cost series on health and diversity volume 1

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COST SERIES ON HEALTH AND DIVERSITY VOLUME 1

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COST – the acronym for European Cooperation in Science and Technology – is the oldest and widest European intergovernmental network for cooperation in research. Established by the Ministerial Conference in November 1971, COST is presently used by the scientific communities of 36 European countries to cooperate in common research projects supported by national funds. The funds provided by COST – less than 1% of the total value of the projects – support the COST cooperation networks (COST Actions) through which, with EUR 30 million per year, more than 30 000 European scientists are involved in research having a total value which exceeds EUR 2 billion per year. This is the financial worth of the European added value which COST achieves. A ‘bottom up approach’ (the initiative of launching a COST Action comes from the European scientists themselves), ‘à la carte participation’ (only countries interested in the Action participate), ‘equality of access’ (participation is open also to the scientific communities of countries not belonging to the European Union) and ‘flexible structure’ (easy implementation and light management of the research initiatives) are the main characteristics of COST. As precursor of advanced multidisciplinary research COST has a very important role for the realisation of the European Research Area (ERA) anticipating and complementing the activities of the Framework Programmes, constituting a ‘bridge’ towards the scientific communities of emerging countries, increasing the mobility of researchers across Europe and fostering the establishment of ‘Networks of Excellence’ in many key scientific domains such as: Biomedicine and Molecular Biosciences; Food and Agriculture; Forests, their Products and Services; Materials, Physical and Nanosciences; Chemistry and Molecular Sciences and Technologies; Earth System Science and Environmental Management; Information and Communication Technologies; Transport and Urban Development; Individuals, Societies, Cultures and Health. It covers basic and more applied research and also addresses issues of pre-normative nature or of societal importance. Web: http://www.cost.eu

Every attempt has been made to ensure the accuracy and reliability of the information in this book. Neither the authors nor the publisher can be held responsible for any disadvantages readers might experience from the perusal of this book.

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David Ingleby, Allan Krasnik, Vincent Lorant & Oliver Razum (Eds.)

COST Series on Health and Diversity Volume 1

Health inequalities and risk factors among migrants and ethnic minorities

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David Ingleby, Allan Krasnik, Vincent Lorant & Oliver Razum (Eds.) COST Series on Health and Diversity Volume 1: Health inequalities and risk factors among migrants and ethnic minorities Antwerp – Apeldoorn Garant Publishers 2012 324 pp – 24 cm ISBN 978-90-441-2928-1 D/2012/5779/55 NUR 740 Cover design: Danny Juchtmans © Garant Publishers & the authors All parts of this book are protected by copyright. Every use beyond the narrow limitations of the copyright law is inadmissible without the prior permission from the copyright owners. This is also valid for photocopying, translations and other copies as well as storage and utilisation in electronic systems.



Garant Publishers Somersstraat 13-15, 2018 Antwerp, Belgium Koninginnelaan 96, 7315 EB Apeldoorn, The Netherlands www.garant-uitgevers.be [email protected] www.garant-uitgevers.nl [email protected]

Contents

CONTENTS

Introduction by series editor David Ingleby

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PART 1. GENERAL ISSUES 1. Research agenda for tackling inequalities related to migration and ethnicity in Europe Raj Bhopal

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2. Problems and barriers in the collection of ethnicity and migration related data Mark Johnson

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3. Using existing health information systems for migrant health research in Europe: challenges and opportunities Katia Levecque, Fernando Garcia Benavides, Elena Ronda & Ronan Van Rossem 4. Ethnicity and socioeconomic status as determinants of health Vincent Lorant & Marie Dauvrin 5. The interplay of health, migrant status and socioeconomic status in eight EU countries Ursula Karl-Trummer & Sascha Sardadvar

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PART 2. RESEARCH ON SPECIFIC GROUPS AND HEALTH PROBLEMS 6. The wellbeing of unaccompanied refugee minors Ilse Derluyn & Marianne Vervliet 7. Psychiatric morbidity in former refugee children 12-20 years after settlement in Sweden: a national cohort study Anders Hjern

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Health inequalities and risk factors among migrants and ethnic minorities

8. Acculturation, depression and identity negotiations among young second-generation Somali migrants Warsan Osman Saleh, Kam Bhui & Nasir Warfa

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9. Health issues among female migrant domestic workers Christiana Kouta & Charis Kaite

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10. The health of new labour migrants: Polish migrants in Norway Elżbieta Czapka

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11. Mental health and wellbeing of intermarried couples in Denmark: implications for psychosocial services Rashmi Singla & Dagny Holm 12. Perinatal morbidity and mortality among migrants in Europe Erika Sievers

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13. Ethnic differences in the perception and description of menopausal symptoms in women aged 45-60 in Berlin Theda Borde & Matthias David

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14. Developing an integrated approach for research and policies on migration, health and ageing Ana Alexandre Fernandes & Beatriz Padilla

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15. Health status of minorities during epidemiological transition: the case of the Arab minorities in Israel Jalal Tarabeia, Manfred Green & Fuad Iraqi

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PART 3. REDUCING RISKS BY PREVENTION AND HEALTH PROMOTION 16. Obesity among migrant children and adolescents: a life-course perspective on obesity development Anna Reeske & Jacob Spallek

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17. Health promotion interventions for migrant groups: the need for a strategic approach and key principles Gina Netto

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18. Adaptation of health promotion interventions for ethnic minorities: a mixed methods review Jing Jing Liu, Emma Davidson, Raj Bhopal, Martin White, Mark Johnson, Gina Netto & Aziz Sheikh

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19. Involvement of migrants in health promotion interventions: results of the EU project ‘Healthy Inclusion’ Daniela Kallayova & Marek Majdan

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20. Breast cancer screening among immigrant women: do we need specific approaches in risk communication? Eva-Maria Berens, Jacob Spallek & Oliver Razum

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About the authors and editors

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Health inequalities and risk factors among migrants and ethnic minorities

Introduction by series editor

Introduction by series editor

David Ingleby

The twenty chapters in this volume offer a selection of work carried out in the framework of COST Action IS0603, Health and Social Care for Migrants and Ethnic Minorities in Europe (HOME), during the four years of its existence (2007-2011). Like its companion volume, Inequalities in health care for migrants and ethnic minorities, it includes a selection of topics illustrating the breadth and depth of the research undertaken by members of the Action and their colleagues drawn from over 30 countries, of which 16 are represented in this volume. This publication is supported by COST. The health of migrants and ethnic minorities is an issue that has dramatically increased in importance over the past three decades. Europe has lagged behind traditional ‘countries of immigration’ in North America and Australasia in awareness of this issue, but is fast catching up: moreover, countries in the Far East relying for economic growth on large numbers of migrant workers are also starting to take an interest in it. The number of migrants worldwide has increased steadily since World War II to reach almost 216 million in 2010, of whom more than a quarter live in the European region (MPI, 2011). In areas of long-established migration such as North-west Europe, descendants of migrants – the ‘second generation’ and beyond – may be even more numerous than the first generation; they too are a population of concern when it comes to health. In this book we refer to all those with a migration background as ‘migrants and ethnic minorities’: in addition, the latter category includes national minorities and indigenous minorities, of which the Roma population is the most numerous in Europe. Why is the health of these groups such an important issue? Although in some respects migrants may be healthier than the host population, there is increasing evidence of conditions for which they may be at a particularly high risk. The same is true of ethnic minorities, especially those experiencing discrimination and social disadvantage. Similarly, there is evidence that these groups often do not get the care that they need. This volume is concerned with the state of health of migrants and ethnic minorities and the health risks they are exposed to. It also addresses the question of how these risks can be lowered through health promotion and prevention.

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It is important to realise that such discrepancies in state of health are not the main reason why service provision for these groups needs to be improved. Inadequate health care is only one of the factors determining poor health, and even if their health were the same as – or better than – that of other groups, migrants and ethnic minorities would still have the same right to good quality, accessible health care as others. Health systems offer us protection against what Shakespeare calls “the slings and arrows of outrageous fortune” – specifically, against the risk that we will be assailed by an illness or injury requiring expensive treatment that is totally beyond our means. In addition, all of us need preventive care to reduce the risk of health problems, as well as low-threshold primary care to ensure such problems are tackled at a early stage. Most migrants are, in fact, allowed partial or full access to the host country’s health system, but this does not guarantee that the system will respond adequately to their special needs (e.g. by adopting measures to bridge linguistic or cultural gaps). Though this issue goes beyond the scope of the present volume, epidemiological data can give insight into the areas in which health systems may be failing and the ways in which they may need to be adapted. PART 1. GENERAL ISSUES Good research has increasingly become the sine qua non of improvements to health services. Steadily rising costs have made policy-makers much more demanding about the level of proof required to implement new interventions. Whereas it may once have been sufficient for health professionals to make pronouncements based on their clinical experience, today they must back up their claims with facts and figures. That is why research has become such an important component of public health. This is particularly true in the area under consideration, where objective knowledge is hard to come by and policy-makers may be reluctant to make changes for the benefit of groups outside the mainstream of society. In Chapter 1, Raj Bhopal argues for more systematic and comprehensive monitoring of the state of health of migrants and ethnic minorities, stressing that this is an important aspect of social inclusiveness. These groups can and should themselves participate in the process. Chapter 2 by Mark Johnson also highlights the need for better information and analyses the barriers to collecting it using the United Kingdom as a case study. In Chapter 3, Katia Levecque and her colleagues examine the possibilities of using European datasets for this type of research. Though there is a great deal of work still to be done, the quantity and quality of European research in this field has increased enormously over the last two decades. It has become steadily clearer that no simple generalisations can be made about the

Introduction by series editor

health of migrants and ethnic minorities: findings differ according to the type of migration, ethnicity, sex, age, sender and host country, and the health problem we are talking about. We may sum up the situation by saying that there are few main effects but many interactions. However, that does not make the problems that come to light any less serious. A major issue concerns the socioeconomic position of these groups, which is often less favourable than that of the majority. Indeed, the increasing numbers of migrants to Europe can be seen as a response to the upward social mobility of the native population: migrants are needed in order to do the work that the autochtonous population increasingly regards as ‘beneath its station’, and to work in conditions and for wages which they would not accept. The increasing wealth and educational level of the majority creates, as it were, a vacuum at the bottom of the social scale, which migrants are needed to fill. Of course, skilled migration takes place as well – but in most European countries to a far lesser degree. The question therefore arises of whether the health differences found in migrants and ethnic minorities are simply a reflection of their socioeconomic position, or whether other factors are at work such as cultural differences, genetic factors, discrimination and so on. This issue has come to the fore since the rise of work on the socioeconomic ‘gradient’, stimulated by the WHO’s landmark report Closing the Gap in a Generation (CSDH, 2008). In Chapter 4 Vincent Lorant and Marie Dauvrin apply the Durable Inequality Theory of the American sociologist Charles Tilly to the question of how socioeconomic inequalities could be linked to ethnicity, race and migrant status. Chapter 5 by Ursula Karl-Trummer and Sascha Sardadvar discuss this relationship further and show that many health discrepancies cannot, in fact, be explained purely as the result of socioeconomic factors. Even when they can, ethnicity and migration status remain important for understanding how the socioeconomic differences arise and how they can be tackled. PART 2. RESEARCH ON SPECIFIC GROUPS AND HEALTH PROBLEMS The topic of migrant and ethnic minority health stretches out over a large and varied collection of groups and a broad spectrum of health issues. Moreover, the situation in one country does not necessarily resemble the situation in another. For obvious reasons, only a small selection of the many possible issues in this area can be presented here. Part II begins with three chapters concerning groups of migrants who, to a greater or lesser extent, have been forced to flee their home countries – even though many of them do not meet the increasing rigorous criteria required in order to qualify as a ‘refugee’ in the sense of the 1951 Refugee Convention.

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In Chapter 6 Ilse Derluyn and Marianne Vervliet examine the situation of unaccompanied migrant children, who may or may not apply for asylum in the countries they end up in. This is a growing and highly vulnerable group, whose interests are in theory firmly protected by Convention on the Rights of the Child, but in practice increasingly subordinated to the demands of ever more stringent immigration policies. The authors’ many-faceted analysis of the psychosocial problems of these children shows that their need for protection and support is often much greater than policy-makers are willing to acknowledge. At the same time, a purely ‘problematising’ approach is rejected by the authors, who emphasise the extraordinary strength and resilience displayed by these children in their Odyssean journeys across the globe. Anders Hjern examines in Chapter 7 severe psychiatric problems among former refugee children from Chile and Iran, 12 to 20 years after their settlement in Sweden. Research with refugees over such a long period is rare, because only in countries like Sweden, with extensive health records and the possibility of linking databases to each other, are long-term follow-up studies feasible. In the 30 years since the introduction of the concept of ‘post-traumatic stress disorder’, a vast body of research literature has examined the psychological consequences of the experiences that impel people to flee their homeland. Hjern’s study exemplifies a more recent trend, which is to turn the spotlight on problems resulting from asylum procedures and problems of integration in the host country. The refugees in this study showed an elevated risk of psychotic disorders, self-harm and illicit drug use, but the analysis indicated that this had more to do with their social situation in exile than with the effects of persecution and war in their countries of origin. Chapter 8 by Warsan Osman Saleh and her co-authors looks at Somali migrants in the UK – another group characterised by forced migration, even though not all of them arrive as asylum seekers. As in the previous chapter, the focus is on problems of integration. In this study, however, a narrative rather than a statistical approach is used, exploring the tensions which these young people experience as they try to negotiate a path for themselves between the demands of British culture and those of their often highly traditional parents. These interviews were carried out with a sample of young Somalis under treatment for depression; they show poignantly how people can become crushed and disheartened when they are unable to meet the conflicting expectations of their social environment. Chapters 9 – 15 are primarily concerned with labour migrants, though again it is often hard to draw the line between ‘forced’ and ‘voluntary’ migration. In Chapter 9, Christiana Kouta and Charis Kaite examine the situation of female migrant domestic workers, a group which accounts for a large proportion of the female

Introduction by series editor

migrant population in Europe (currently roughly equal to the male population). Purely in terms of numbers, the ‘feminisation of migration’ took place in Europe well before the beginning of the twentieth century. Looking more closely at the role of women migrants, however, we see a substantial shift in the last two decades from migration by women as dependents of men, to migration by women as workers in their own right (Rubin et al., 2008). In spite of the fact that European countries need migrant domestic labour to enable their own female population to participate in the labour market and to care for increasing numbers of elderly people, there are very few countries which recognise such work as ‘labour’ for the purposes of acquiring a residence permit. As a result, many female migrant domestic workers have no proper residence documents, which deprives them of elementary rights and further increases their vulnerability to exploitation. Both their state of health and their access to health care may be seriously impaired. Kouta and Kaite use Cyprus as a case study to illustrate the predicament of this group of migrants and the urgent need for enlightened new policies. Chapter 10 looks at the ‘new migration’ which arose from the enlargements of the EU in 2004 and 2007 and led to the largest population movements in Europe since World War II. Many Polish migrants sought work in affluent countries to the North and West, for example in Norway where this study was carried out. This ‘new migration’ is characterised by its temporary nature and the maintenance of strong ties with the home country. In this chapter Elżbieta Czapka examines the way migration has changed since the ‘old’ labour migration characteristic of the 1950’s and 1960’s. She does so through the lens of health, by asking migrants in both questionnaires and openended interviews about the way they live and its effect on their physical and mental well-being. For many of the migrants studied, especially the women, their migration turned into a kind of endurance test in which the need for companionship and warmth struggled against the need to keep earning money. For men, the challenge was often a physical one – to work as long and as hard as their body could take. The health needs of both groups were thus considerable, but they seldom reached out to Norwegian health services for help – and the services appear to have made little effort to reach out to them. Chapter 11, by Rashmi Singla and Dagny Holm, examines the phenomenon of ‘mixed marriages’. In today’s diverse Europe such partnerships are increasingly common, but they receive surprisingly little attention from researchers, health workers and policy makers. The authors carried out in-depth interviews with ten persons in Denmark to investigate how the fact of ‘mixedness’ impinged on their relationships and their well-being. Mixed marriages have a special significance in the Danish context, where since 2002 the laws governing marriage with a foreigner have been the strictest in Eu-

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rope. In an attempt to shut the door as tightly as possible on non-Europeans coming to Denmark to get married, stringent demands were imposed on both partners. ‘Mixedness’ has thus acquired almost an illicit character – something the government is trying to stamp out. At the best of times, cultural and ethnic differences can place a strain on a relationship, and the lack of social acceptance of such couples in Denmark amplifies these strains. We see in this chapter how couples in various phases of their relationships negotiate the dilemmas that confront them. The chapter offers recommendations for counselling and mental health services dealing with people in such relationships. Erika Sievers in Chapter 12 tackles some of the most urgent health problems in our field, those surrounding pregnancy, childbirth and early childhood. It is significant that Margaret Chan, Director of the World Health Organization, singled out this problem for attention at the 2007 Portuguese Presidency Conference on ‘Migration and Health in the EU’ (Chan, 2008:222): “The high mortality among mothers and children in migrant populations jeopardizes the ability of some European countries to meet the health-related Millennium Development Goals”. Certain groups are at risk but others are not; the causes are not fully understood but may involve factors arising in the countries of origin, lack of information and adequate support, genetic factors and poor access to health services. Using data from the German state of North Rhine Westphalia, Sievers discusses prematurity, stillbirths, maternal and infant mortality and a range of associated health problems. In this area, targeted preventive services and health promotion are of crucial importance, yet such programmes have hardly got off the ground. With the following two chapters we move to later phases of life. Ageing is a relatively new topic in studies of migrant health; the typical migrant is assumed to be young. However, typical migrants also age, and may bring their parents to join them in the host country. Most of the migrants who helped to power Europe’s economic boom in the 1950’s and 1960’s are now past retiring age, and having to deal with the fact that health services – which they now need more than ever – are poorly adapted to their needs. An additional category of ageing migrants are those who retire to Southern Europe in search of ‘a place in the sun’ – taking their health problems with them. Theda Borde and Matthias David describe in Chapter 13 how menopausal symptoms have become an important topic in European health care, due in particular to the controversies surrounding menopausal hormone therapy. However, hardly any research has investigated whether this phase of life is experienced differently by different groups. Their research, using both questionnaires and interviews, showed that although the cultural meaning of the menopause differs, Turkish women in particular experienced the most difficulties; this may say more about their place in German society than about their cultural background. At the same time, interesting

Introduction by series editor

differences emerged between the picture obtained using quantitative and qualitative methods – a finding which has wider implications for health research. Chapter 14 by Ana Alexandre Fernandes and Beatrix Padilla places the phenomenon of ageing among migrants in demographic and sociological perspective. For many retired migrants, the choice between staying in the host country and returning to their country of origin presents painful dilemmas. If they decide to stay, they may be faced with problems of isolation and lack of support. These particularly affect women, because a much higher proportion of married men than women are likely to benefit from their spouse’s support: “women grow old alone, men grow old in a couple”. The authors conclude with an account of the WHO’s ‘Active Ageing’ paradigm, which aims at mainstreaming policies that promote health, participation and security for older people. This paradigm offers a comprehensive framework within which policies for ageing migrants can be developed. The final contribution to this section, by Jalal Tarabeia, Manfred Green and Fuad Iraqi (Chapter 15), not only takes us outside the borders of Europe but also introduces a new theoretical concept – that of the ‘epidemiological transition’. This is the medical counterpart of the well-known ‘demographic transition’, describing the effects of industrial modernisation on population development. At the start of the modernisation process, life expectancy is short and child mortality (in particular) is high. Corresponding to this is a high level of fertility: a woman will bear many children, perhaps as many as she can. In the initial stages of modernisation, living conditions improve: better nutrition and health care raise survival rates and lead to rapid – sometimes explosive – population growth. However, fertility is strongly influenced by social norms, which change much more slowly (unless, as in China, the government imposes new norms). Until fertility rates go down a population surplus will be generated, which will encourage many to emigrate. In the later stages of modernisation women will bear fewer children – perhaps not even enough to maintain the population at a constant level. The ratio of old to young people will increase, so that immigration is likely to be necessary to maintain the workforce and the tax base required to support the large numbers of economically unproductive older people. At present, developing countries in many parts of the world are in the earlier stages of this transition, sending many migrants to more prosperous countries that are in its later stages. Western Europe is one of the latter, population growth having flattened out and in many countries started to decrease. North America, Australia and New Zealand are also in a late stage, but in contrast to Europe these countries have chosen to counteract the effects of demographic change by permitting substantial immigration. This is not the place to discuss the wisdom of the European policy of placing severe restrictions on ‘third country’ immigration. Let us focus instead on the health

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aspects of the demographic transition – the ‘epidemiological transition’. This concept was developed by Omran (1971) and entails that as modernisation proceeds, chronic and ‘degenerative’ diseases will gradually displace infectious diseases and undernourishment as the major causes of death. This phenomenon can be observed in the recent history of highly-developed industrialised countries. However, it is also the case that “typically, more affluent groups make these transitions more rapidly than poor or ethnic minority groups” (Gulliford, 2003:408). This implies that chronic and non-communicable conditions will be slower to become dominant in the disease profiles of populations of migrant origin in Europe, as well as ethnic minorities such as the Roma in Europe or the Arabs in Israel. These ideas have yet to be fully worked out, but the work described in Chapter 15 illustrates their usefulness. The Arab population occupies a disadvantaged socioeconomic position in Israel; their burden of chronic and non-communicable diseases has increased much later than that of the Jewish population, but it is now starting to constitute their main health problem. As a consequence, the emphasis in health care is shifting towards preventive measures and health promotion. This leads to the theme of our final section. PART 3. REDUCING RISKS BY PREVENTION AND HEALTH PROMOTION As we have just seen, advanced industrial societies are characterised by the predominance of chronic, non-communicable and ‘degenerative’ diseases over other causes of death. This is not simply a result of the ageing of the population, but has also to do with the living conditions that accompany modernisation. It is not only adults who are vulnerable to chronic conditions; obesity and overweight, for example, typically get worse with increasing age, but they may also be a serious problem among children and young people. As a result of the ‘epidemiological transition’, the role of public health, prevention and health promotion has become increasingly important in modern health care. Migrant and minority populations undergo the same transition, though generally later than the majority population. As a result, workers in the field of migrant health have only recently begun to deal with issues of prevention and health promotion. The first aspect of this work, prevention, is still only in the early stages of development, insofar as it involves tackling the social determinants of migrant (ill-) health. The other aspect is health promotion, i.e. persuading people to take more responsibility for their own health and do their best to avoid illness. Of course, health promotion is also relevant to the avoidance of infectious diseases and accidents, as well as the sensible planning and management of pregnancy and childbirth; but the priority target of health promotion for migrants at the moment concerns conditions like obesity and overweight, diabetes mellitus, hypertension and coronary heart disease. These are strongly influenced by the way people live – in particular,

Introduction by series editor

by diet, exercise, smoking and alcohol. We should not make the mistake of thinking that the lifestyle choices people make are purely a matter of free will. A wide range of pressures and constraints may make it very difficult for them to adopt healthier lifestyles. It is also worth remembering here, as Raj Bhopal noted in Chapter 1, that the prohibition on alcohol in certain ethnic groups can be a health advantage as long as it is observed. To be able to intervene successfully in the development of obesity presupposes, of course, that we know how this development takes place. As Anna Reeske and Jacob Spallek show in Chapter 16, that is far from being the case – either for migrants or for the general population. Preventing obesity is not simply a matter of keeping the lid on the sweet jar: a multifactorial, life-course perspective on the problem has to be developed, which takes special account of the special conditions applying to of migrants and ethnic minorities. Critical periods in different phases of the life cycle may have long-term effects, and influences may be transmitted from parents to children via genetic, behavioural and socioeconomic channels. The following three chapters focus on the specificity of health promotion interventions for migrants and ethnic minorities, i.e. the need to develop ‘targeted’ approaches. The first task is to reach the target group, the second to influence them. Health promotion is often described as a ‘battle for hearts and minds’; a purely cognitive approach, simply telling people what is good for them, is unlikely to help them to stop smoking, take more exercise or eat healthier food. Approaches which work for the majority population may not work for migrants and minorities. In Chapter 17, Gina Netto focuses on minority ethnic groups in Scotland and extracts five principles from a review of health promotion interventions targeting these groups. In summary, these are: 1. Use community resources to increase accessibility; 2. Identify and address barriers to access and participation in interventions; 3. Develop communication strategies which address language use and differential information requirements; 4. Identify and work with cultural or religious values that either motivate or inhibit behavioural change; 5. Accommodate degrees of ethnic/cultural affiliation in the planning and evaluation of targeted interventions. In Chapter 18, Jing Jing Liu and her colleagues report on the results of a broader project designed to tackle the same issue. Although numerous interventions have been developed for health promotion activities with migrants, it is hard to see the wood for the trees when so many different groups, health conditions, countries and strategies are involved. This project aimed to identify “which adapted health promo-

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tion interventions work for whom in what contexts and are ready for implementation into routine models of care”. The major challenge was to develop a methodology for sifting the large amount of evidence available. A key element of all health promotion activities is the involvement of the target group. The contribution by Daniela Kallayova and Marek Majdan (Chapter 19) describes an EU-financed project, ‘Healthy Inclusion’, which set out to investigate the barriers to migrants’ participation in such activities, as well as ways to increase it. The study was conducted in four ‘old EU member states’ (Austria, Denmark, Italy and the Netherlands) and three ‘new’ ones (Czech Republic, Estonia, and Slovakia), on the assumption that conditions would probably be very different in these groups of countries. In addition to a literature review in each country, the project carried out interviews with both migrants and health workers. This project generated much useful information about the extent of health promotion programmes in Europe and the degree to which migrants participate in them. It also formulated recommendations for more successful targeting of interventions, including as a central principle that they should be carried out in the language which is most often used by the people they are supposed to benefit. Though this may seem obvious, there is resistance among some European governments to implementing this recommendation, based on the idea that maximum pressure should be exerted on migrants to learn the language of the host country. However, as the authors drily note, “it is debateable whether migrants are likely to learn a new language in order to get access to health promotion”. Finally, Eva Berens discusses in Chapter 20 the issue of participation in breast cancer screening (mammography) programmes by migrant and ethnic minority women. Often, participation by these groups is low: in the Netherlands, the average attendance rate was above 80%, but for older Turkish women it was only 40%. The chapter examines possible factors which may underlie these low figures. However, we cannot automatically conclude that groups with a low level of participation should be the target of special interventions. Apart from the expense and effort required, we need to consider the possible disadvantages of screening and its likely efficiency, paying as much attention to the risk of false-positives as that of false-negatives. The efficiency of screening depends on the prevalence and age of onset of breast cancer in the group in question: prevalences are known to be lower among certain migrant groups, so that well-founded doubts can arise over the value of screening programmes for these groups. This chapter shows, therefore, that health promotion strategies should not be considered in isolation from the specific risk profile of particular groups. * * *

Introduction by series editor

One very welcome ‘good practice’ that has taken root in scientific journals these days is the habit of adding a section ‘shortcomings of the study’ to every article. Having given here a brief overview of what this book contains, it may be useful here to mention what it does not. In particular, a word is in order about the lack of attention for infectious diseases. This reflects the emphasis in the meetings held by COST Action IS0603, but it should not be concluded that the topic is unimportant. Traditionally, in fact, infectious diseases have been the central theme of work on migrant health. Prevalences have been studied, as well as routes of transmission, means of prevention, and health promotion strategies for limiting infections. However, as we saw above, demographic changes have led to changes in the prolife of diseases among migrant populations, whereby chronic and non-communicable conditions have become more prominent. This has partly to do with the ageing of migrant populations, but not entirely; as already noted, although chronic conditions are commoner in old age they can also arise in childhood. This shift in emphasis has to be viewed in historical perspective. Traditionally, work on migrant health – which perhaps starts with the inspections carried out over a century ago at Ellis Island, in the shadow of the Statue of Liberty, to reduce the threat of ‘import diseases’ – viewed the issue solely from the perspective of the receiving country. The only concern was with infectious diseases, because only these could damage the health of the host population. This one-sided concern, viewing migrants as a risk to the majority, also resonated with the general view of migrants as ‘dangerous’ and ‘threatening’. Even a society composed of migrants, such as the USA, was capable of adopting this attitude to those who arrived later. From about the 1970’s a reaction seems to have set in against this approach and it became increasingly regarded as discriminatory and unjust. During this period there also were many indications that the global prevalence of infectious diseases was declining, so that in the near future they might be altogether stamped out – thus removing the pragmatic justification for the emphasis on migrants as carriers of health threats. This optimism turned out to be premature, however, because towards the end of the century infectious diseases on a global scale came back with a vengeance; world-wide epidemics of tuberculosis, hepatitis A and B and HIV/AIDS brought back the concern that migrants coming from areas of high prevalence could bring these diseases with them. Since the days of Ellis Island, however, more respect has been acquired for the human rights of migrants. Whereas the main task of the health inspectors then was to send sick people back where they came from, most interventions today are aimed at helping the person with the disease. France even introduced legislation in 1998 entitling immigrants with HIV/AIDS, for whom no treatment was available in their country of origin, to be given a residence permit. The topic of infectious disease is an important and complex one, and although no chapter in this book deals specifically it, good reviews have been provided by

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Carballo (2009) and the European Centre for Disease Prevention and Control (ECDC, 2009). In conclusion, something needs to be said about the way these chapters originated in the meetings of COST Action IS0603. First, it should be remembered that COST does not pay for research; all the work discussed here was financed from other sources. What this Action did was to bring people together in a programme of 33 scientific meetings, held in 15 different European countries on topics chosen democratically by the members. The aim of these meetings was to overcome several kinds of fragmentation – divisions between countries, between disciplines, between proponents of different methods or theories, and between specialists in different areas. The outcome of these meetings was enormously stimulating for all involved. Thanks to the energy and commitment of the participants, a high level of presentations and discussions was maintained. As the French saying goes, “Du choc des opinions jaillit la lumière de la vérité” (the collision of opinions generates the light of truth), and although people frequently found their opinions challenged this was always done in a friendly and constructive way. New research collaborations were set up, new articles co-authored and the Action amply demonstrated the value of COST as a scheme for promoting innovative research. Finally I would like to express my gratitude to the authors who have worked so hard to prepare these chapters, to the editors who have painstakingly reviewed and corrected them, to Garant publishers for their skilful and understanding management of the production, and to COST for providing the subsidy which made publication of the book possible. Utrecht, February 2012 David Ingleby

Note on referencing conventions For reasons of brevity, where a link is given to a source available on internet, no information is provided about the date on which the source was accessed. All links were checked at the time of going to press. Url’s which were excessively long have been shortened using bit.ly. Readers are reminded that even when no link is given, it is often possible to find a work on internet with the help of a search machine.

Introduction by series editor

References Carballo M. (2009). Communicable diseases. In: A. Fernandes and J. Pereira Miguel (Eds.) Health and Migration in the European Union: Better Health for All in an Inclusive Society (pp. 8-14). London: Pro-Book Publishing Limited. http://bit.ly/GT2x4h Chan, M. (2008). Closing address to the 2007 Portuguese Presidency Conference. In: A. Fernandes and J.P. Miguel (Eds.), Health and Migration in the European Union: Better Health for All in an Inclusive Society. Conference Proceedings (pp. 219-223). Lisbon: Instituto Nacional de Saúde Doutor Ricardo Jorge. http://bit.ly/Avq3pI CSDH (2008). Closing the gap in a generation: health equity through action on the social determinants of health. Final report of the Commission on the Social Determinants of Health. Geneva, World Health Organization. ECDC (2009). Migrant health: background note to the ECDC report on migration and infectious diseases in the EU. Stockholm: European Centre for Disease Prevention and Control. http://bit.ly/xHj0nY Gulliford, M. (2003). Commentary: Epidemiological transition and socioeconomic inequalities in blood pressure in Jamaica. International Journal of Epidemiology, 32, 408-409. MPI (2011). World Migration Map. Washington: Migration Policy Institute. http://www.migrationinformation.org/datahub/wmm.cfm Omran, A.R. (1971). The epidemiologic transition. A theory of the epidemiology of population change. Milbank Memorial Fund Quarterly, 49, 509-38. Rubin, J., Rendall, M.S., Rabinovich, L.,Tsang, F. & van Oranje-Nassau, C. (2008). Migrant women in the European labour force: Current situation and future prospects. Report for the European Commission. Santa Monica, CA: RAND Corporation.

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Title

PART 1

GENERAL ISSUES

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Research agenda for tackling inequalities related to migration and ethnicity in Europe

Chapter 1

Research agenda for tackling inequalities related to migration and ethnicity in Europe

Raj Bhopal

1. Summary Reducing ethnic inequalities and inequities in health needs to become a higher priority for public health research. Active involvement of migrant and ethnic minority populations in European population health research is necessary, for data show important inequalities but evidence, particularly on effectiveness, is sparse and strategic overviews rarer still. Ethnically disaggregated health surveillance systems are developing slowly and pragmatically, often using country of birth. The principles to adopt, given the gaps between the ideal and the current reality, need wider discussion. Ethics may provide both principles and impetus. Doing no harm, doing good, and respecting the research participants’ autonomy are good starting points. More emphasis is needed on justice, fairness & equality, participation and communicating effectively. Ethnic minority groups are willing participants in trials once linguistic and trust-related barriers are overcome, though recruitment costs are higher. Guidelines and strategies by European bodies with research funding or enforcement responsibilities are needed. The example of Scotland shows that clear leadership can lead to improved collection within a relatively short space of time. The research community needs an infrastructure within which to collect and utilise evidence. Research can help migrant and ethnic minority groups to participate more fully in our multi-ethnic societies.

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Meanings of some terms as used in this chapter – Ethnicity (subsuming race): the group you belong to, or are perceived to belong to, because of culture, ancestry, or physical features. – Migrant: someone who leaves one country to take up residence in another. – Inequality: difference. – Inequity: a difference that is potentially unjust.

2. Inequalities and inequities in health and health care Among the highest priorities for public health research, policy and practice is reducing inequalities, not through passive convergence but by improving the health of the worse off groups so they converge with those in the best off (Commission of the European Communities, 2009; Marmot, 2005) Migration and ethnicity, two closely interrelated phenomena, are associated with major differences in environment (moving from one country to another) and culture (the core of ethnicity), and some group-level differences in biology (reflecting ancestry). These differences lead to inequalities in health, that are easily demonstrated by relevant epidemiological variables such as country of birth, and self-reported ethnicity and race (Bhopal, 2007). The size of such inequalities cannot be matched by most other epidemiological variables (except age group) in within-country statistics (Bhopal, 2007). For example, we see 4-6 fold differences in diabetes (Bhopal et al., 1999), 10-20 fold differences in prevalence of smoking (Bhopal et al., 1999) and even larger differences in alcohol consumption and alcohol-related diseases (Bhala et al., 2009). Sometimes the inequalities are in favour of minorities, at other times the opposite (Bhopal, 2007). Unlike socio-economic inequalities in the settled White European populations, the direction of ethnic inequalities is hard to predict and the usual indicators may not be confounding factors (Bhopal et al., 2011a; Kelaher et al., 2009; Williams et al., 1998). So we need research, information, plans and actions to describe accurately and then tackle such inequalities. The questions addressed in this chapter include these: – Why is inclusion of migrant and ethnic minority populations in European population health research important? – What is the state of such research, particularly on effectiveness of interventions? – What principles can we adopt given the gaps in evidence? – What messages are there for setting the future agenda for inequalities research in Europe?

Research agenda for tackling inequalities related to migration and ethnicity in Europe

This chapter sets out issues for discussion and indicates broad actions that will spur on research. It does not, however, specify the research projects that need to be done. Clearly, this more detailed agenda can only be accomplished once broader principles are established and regionally, according to the needs and interests of populations, policy makers and researchers. 3. Why is inclusion of migrant and ethnic minority populations in European population health research important? Policy and law across Europe, and much of the world, requires us to meet fairly the health care needs of minority migrant and ethnic communities (Fernandes & Pereira Miguel, 2009; WHO Regional Office for Europe, 2010). The driving force is the quest for equity and equality in health status. This means that we need to assess the level of inequality, judge whether each inequality is also an inequity meaning there is an element of injustice or unfairness, and both pinpoint and apply effective interventions to resolve matters. The duty imposed by law is usually explicit on public bodies, but unfortunately it is more limited for private ones. In the UK, for example, we have the Race Relations Amendment Act 2000 (The Home Office, 2001), the DH and Scottish Executive action plan ‘Fair for All HDL’ (Scottish Executive, 2002), research governance frameworks (e.g. DH 2001, Johnson, 2003) and the Scottish Strategy for Ethnicity and Health Research 2009 (The Scottish Ethnicity and Health Research Strategy Working Group, 2009). From a public health perspective, which drives law and policy in relation to its health applications, data are essential to establish the extent of health inequalities and inequity in health service provision, choose between interventions i.e. set priorities, monitor impact of interventions to reduce inequities and inequalities, and demonstrate response to laws and policies (Bhopal, 2007). It is impossible to demonstrate that new or adapted interventions and services are needed, and equally, that the interventions have redressed inequities, without data. 4. What is the state of evolution of such research in Europe, particularly on effectiveness of interventions? While European data are sufficient to establish that important inequalities exist (Arnold et al., 2010), they are patchy, inconsistent, incomplete and insufficiently accurate to meet the needs of public health policy or health care provision (Rafnsson & Bhopal, 2009; Razum et al., 2011). Existing data do not usually provide a national perspective as they are mostly from local studies. We are distant from the goal of a pan-European perspective, though there is clear evidence of both interest and need (Bhopal et al., 2011b).

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More broadly, we also find a limited strategic overview of research. Research is mostly driven by the interests of a few academics/institutions, and the often highly specific and local concerns of voluntary organisations representing migrant and ethnic minority groups. There is also a shortage of evaluative research of health services relating to accessibility and use of health services by minority migrant and ethnic groups, appropriateness of health services, and patterns of employment in the health service (Nielsen et al., 2009). There are few data on minority ethnic groups’ use of the full range of health services (primary, secondary and support), and this raises continuing and awkward questions related to accessibility of health services, and patterns of referral and use of health services, and possible discrimination (Nielsen et al., 2009; Nørredam et al., 2009). In the UK, but seldom elsewhere in Europe, there is sparse but quickly growing ethnically disaggregated morbidity surveillance data (Johnson, 2008). Death and birth certification data that underpin public health surveillance are generally not available by ethnic group but country of birth is often available (Rafnsson & Bhopal, 2009; Stronks et al., 2009). There is a lack of ethnically disaggregated data in large scale surveys in Europe, with the Health surveys for England 1999 and 2004 being exceptional (Becker et al., 2006; The Department of Health, 1999). Unsurprisingly, therefore, there is a shortage of major trials and cohort studies providing data by ethnic group and migration status (Hussain-Gambles et al., 2004). Ranganathan and Bhopal showed that while 15 of 31 North American cardiovascular cohort studies provided data by ethnic group, the corresponding figures in Europe were zero out of 41 (Ranganathan & Bhopal, 2006). Bartlett and colleagues reported that eight of 47 trials on statins were specific about ethnicity-all eight were USA based (Bartlett et al., 2003). Several other similar studies have come to the same conclusion (Sheikh et al., 2004). In the absence of such work whether health promotion and prevention interventions in Europe are effective across migrant and ethnic groups, whether adapted (rarely so) or not, is generally unknown (Netto et al., 2010). The contrast between the research record in this field in USA and Europe is stark. Why might it be so? The USA is a country forged by in-migration, whereas, until recently Europe was forged by out-migration (Huxley et al., 1935). The USA has been a multi-ethnic nation for hundreds of years. Race, closely allied to ethnicity, has been and remains a powerful issue in USA politics and national life (Williams et al., 1994). The passing of a law in 1993 that required researchers to design their studies so as to include racial and ethnic minorities, and women, as a prerequisite for National Institutes of Health funding has been highly influential (Hohmann and Parron, 1996). Europe has no equivalent requirement and even a debate on the matter seems difficult for researchers (Sheikh et al., 2009).

Research agenda for tackling inequalities related to migration and ethnicity in Europe

5. What principles can we adopt given the gaps? 5.1 Information Systems It is encouraging that there is a clear policy commitment even though currently information across the European Region specifically (Rafnsson & Bhopal, 2009), and more generally globally (World Health Organization, 2010), is poor. Country of birth is widely used as a substitute for migrant and ethnic group and while it is not ideal it offers a pragmatic short to medium term route to progress in Europe as high-quality, complete, migrant status and ethnic group coding in routine information systems is not imminent (with the exception of the UK) (Rafnsson & Bhopal, 2009; Stronks et al., 2009). Recording ethnicity on birth and death certificates is under renewed debate, for example with a launch of a consultation on the matter in Scotland as recommended by the Scottish research strategy (The Scottish Ethnicity and Health Research Strategy Working Group, 2009). The proposal to do this in England and Wales, where it requires government approval, was overturned by the House of Lords. 5.2 Interventions, trials and recruitment The question of what interventions work across a range of ethnic groups is problematic (Bhopal, 2006). The placebo-controlled, randomised, double blind trial is the gold standard but such trials are difficult to conduct, particularly for complex interventions. Do we need evidence from such studies to recommend an initiative in minority migrant and ethnic groups? If so, do such studies exist? What do we do when there are no specific relevant studies, or the evidence is sparse (Bhopal 2006; Netto et al., 2010)? We need a vision for the future and principles that will help us now. Clearly there is a large gap between the ideal and the current reality. The ideal research programme would be comprehensive in tackling the major health issues of the populations under study, inclusive, have high response rates, provide comparable data across a range of ethnic groups, collect information on various facets of ethnicity, adjust for confounding variables, and be analysed and interpreted to advance science, improve health status and develop better health care (Bhopal, 2007). In practice, many of these ideals are sacrificed to make studies feasible given the limitations of funding and human resources, but researchers should take care to outline the limitations arising from such sacrifices. One of the key issues is recruitment of participants into studies, particularly large-scale ones involving cohorts and trials (Epstein, 2008). Ethnic minorities groups are willing participants in trials with consent and response rates on a par with the population as a whole but only once linguistic and trust-related barriers are removed (Bhopal et al., 1999; Wendler et al., 2006). Costs are higher for recruitment but costs in themselves are not ethically or scientifically acceptable as a reason for exclusion (Marquez et al., 2003) To quote Sheikh (2006):

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What is now needed is less blame directed at already marginalised people. Instead, those with the power to change the way in which research is conducted should translate the important insights provided by Wendler and colleagues’ study into significantly more invitations extended to minority ethnic and racial groups to participate in the research endeavour.

5.3 Ethics Ethics of research may provide principles necessary to move forward. The ethics of research generally are applicable to migrant and ethnic minority groups, indeed, ethical codes are usually written following the abuse of minorities, e.g. the Nuremberg Code following the Nazi atrocities of the Second World War, and the adoption of Institutional Review Boards (ethics committees) following the Belmont Inquiry on the infamous Tuskegee Syphilis Study (Bhopal, 2008). Ethical codes may need to be modified to have the desired effects, e.g. not bypassing migrant and ethnic minorities in the interests of expedience. Ethical codes on confidentiality and informed consent may also need modification e.g. in some communities consent is likely to be a family, if not communal, matter. The classical ethical principles of doing no harm, doing good, respecting the research participant or patient, offering autonomy in decision making are a good starting point. In the context of migration, ethnicity and health research these need to be augmented with more emphasis on justice, fairness & equality, inclusivity and participation and communicating effectively (e.g. oral communications in general preference to written ones). If a person does not read, at least arguably, it is unethical (as a waste of resources), to send written information. Arguably, it is ethical to telephone or even call at the doorstep of such a person before writing. Currently, however, ethical rules discourage contact prior to written consent (Bhopal, 2008). The head of the household (usually but not always male) or the whole family may decide on participation. Thus individual informed consent is not always workable or in some circumstances may not be desirable on its own. Clarification that it is unethical to bypass migrant and ethnic minority groups in trials and cohort studies is a necessary, though not sufficient, prerequisite to progress. Ethics committees are in a powerful position to do this (Bhopal, 2008). Bypassing minority ethnic groups might reflect institutional racism (MacPherson, 1999) in the research world. There are some statements on ethics of research in relation to ethnic minority groups but, with the key exception of the US (Hohmann & Parron, 1996), not usually by bodies with funding or enforcement authority (Salway et al., 2009). For example, there is an Ethical Code for Researching ‘Race’, Racism and Anti-racism in Scotland (SABRE). Published in 2001 by the Scottish Association of Black Researchers (SABRE), it emphasises social justice and human rights; commitment to anti-racism and to promoting social inclusion; empowering and actively including black and minority ethnic peoples’ perspectives; and addressing the complex and problematic nature of concepts of ‘race’, racism and ethnic-

Research agenda for tackling inequalities related to migration and ethnicity in Europe

ity. It also requests that research does not pathologise, stereotype or exploit, black and minority migrant and ethnic people, and that research values diversity within the black and minority migrant and ethnic populations. SABRE recommends that researchers should acknowledge the power relations inherent in social research processes, e.g., between White and Black, researchers and researched and families and communities. Unfortunately, as frequently happens with informal actions the guidelines are no longer on the internet, but a summary has been published (Bhopal, 2007). 5.4 Filling gaps and setting the foundation for the future in Europe: the example of Scotland Scotland, like much of Europe, has a shortage of research data by ethnic group. The way it has made progress, particularly using retrospective approaches, might be helpful for other countries. Other countries across Europe which have made a great deal of progress that would be worth sharing in articles similar to this one include, in particular, the Netherlands with a ground-breaking prospective cohort study (Dekker et al., 2011), Denmark with its strong emphasis on health care utilisation research (Krasnik et al., 2002) and Germany, which has been leading the way in relation to cancer (Razum et al., 2011). To my knowledge, however, Scotland is unique in Europe for having a documented research strategy in this field. Filling data gaps retrospectively is possible as shown in Scotland using Census, place of birth, name search, and data linkage methods (Bhopal et al., 2010). The findings have been powerful in altering thinking, not least in guiding Scotland’s ethnicity and health research strategy (The Scottish Ethnicity and Health Research Strategy Working Group 2009). Using Census population data and deaths data we found that compared with White Scottish men and women all-cause mortality was unexpectedly lower among those born in England and Wales, Pakistan, Bangladesh, India (men), China, and the rest of the world (Fischbacher et al., 2007b). Linking Census records to hospitalisations and deaths showed that South Asians’ incidence of heart attack, however, was higher but survival was better (Fischbacher et al., 2007a). Name search methods showed diabetes care for South Asians was equitable but key glycaemia related outcomes were poorer (Fischbacher et al., 2009). More work is being done on cardiovascular disease, cancer, maternal & child health and mental health using linkage methods (Bhopal et al., 2010). The conclusions of a recent strategic review of Scottish research on ethnicity and health to date include that: too little is known about health status of minority ethnic groups due to lack of ethnic coding on health and death records; the research focus has often been on diseases commoner among such populations but not on the most common diseases; little attention has been paid to evaluation of health promotion strategies; there has been little research on effectiveness of mental health services; few of the known findings have been acted upon; and even when data are available,

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opportunities to analyse have not been taken (The Scottish Ethnicity and Health Research Strategy Working Group 2009). Six priorities in the Scottish ethnicity and health strategy (The Scottish Ethnicity and Health Research Strategy Working Group, 2009) 1. Good ethnic coding of health information systems is essential Recommend increase to 80% by 2013 2. Data linkage – considerable scope for further study Recommend this work is taken further 3. Ethnically boosted health survey – UK Longitudinal Health Survey – Scottish Health Survey Recommend at least one is supported 4. Coordinated research on major health problems Recommend focus on evaluations of interventions eg heart disease, cancer, obesity, depression 5. Audit of local health and social care services Recommend each NHS Board should carry out regular audits of range and quality of services for ethnic minorities 6. Coordinating and monitoring research by Implementation Group Recommend hosted by Health Scotland The Scottish Strategy on Ethnicity and Health research, created by a multidisciplinary, multisectoral group with considerable consultation, has noted that defining ethnicity is not easy, so research should be based on the Scottish census classification. It recommended that quantitative studies should be designed, wherever appropriate, to ensure sample sizes are sufficient to produce accurate analyses by ethnic group. As questionnaires need to capture cross-culturally valid information, the strategy recommends that translations should be prepared with help of interpreters and validated before use. Qualitative methods need to be complemented with quantitative data on representative populations. The strategy (The Scottish Ethnicity and Health Research Strategy Working Group, 2009) identified only two evaluations of interventions in Scotland to date: vitamin D (Dunnigan et al., 1981) and Khush Dil

Research agenda for tackling inequalities related to migration and ethnicity in Europe

(Mathews et al., 2007), with another evaluation in progress concerning PODOSA (Gill et al., 2011). Priorities for laying the foundations for future Scottish research are given in the box. The strategy outlines broad approaches that will promote a wide range of research projects, but it does not attempt to direct research to specific research questions – although that could be a useful next step. 6. Conclusions European health initiatives need to cater for migrant and ethnic minority populations with work of equal potential effectiveness and sensitivity. To do otherwise promotes inequality, maintains inequity and is unethical and institutionally racist, if not illegal. We need institutional structures including pro-active strategies, scrutiny by ethics committees and stringent requirements of researchers. Data need to be demonstrably used for increasing awareness and stimulating policy and practices to improve the health of migrant and ethnic minority groups. We need, in particular, to strengthen the evidence base showing effectiveness of interventions by migrant and ethnic group. Legislative and policy imperatives are already integrated and symbiotic, but very often they are not implemented. Ethnicity and health work needs embedding within wider diversity and social justice goals. Ethnicity reflects social circumstances more than biology, and as such it fits well both in the WHO Social Determinants of Disease programme (Venkatapuram & Marmot, 2009) and within the diversity and health movement (Salway et al., 2011). Progress in socio-economic inequalities and health research has been greater than in ethnic inequalities. This is partly historical, as the former has been a central concern of public health in Europe since the 19th century, whereas ethnicity has only elicited serious interest in the last two or three decades. Other reasons include the misguided over-emphasis on biology as the dominant underlying reason for racial and ethnic variations in disease – a perspective that dominated the field until well after the Second World War (UNESCO, 1952). The understanding that through the study of ethnic variations we can potentially benefit entire populations rather than just the minorities is rare, but necessary to bring the subject into the mainstream of research (Bhopal et al., 2011a; Bhopal, 2007). Socio-economic inequalities or social determinants of health work tends to emphasise financial and material resources whereas the diversity agenda – whether on ethnicity, gender, sexual orientation, or disability – puts as much if not even more emphasis on cultural matters. By combining perspectives we create a more powerful ‘equity lens’ (Beauchamp et al., 2010). For example, in ethnic minority groups differences between men and women, particularly in health related behaviours and employment, tend to be larger than in the settled White European populations. Pakistani women, for example, are much less likely to smoke cigarettes or be employed than either Pakistani men or

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White European women (Becker et al., 2006). By analysing such observations from ethnicity, socio-economic, cultural and gender perspectives we are likely to reach more valid and valuable conclusions than from any one of these perspectives. The research community needs infrastructures within which to collect and utilise such evidence. Research is needed for migrant and ethnic minority groups to move from the shadows and participate more fully in a vibrant, healthy, multi-ethnic Europe. Acknowledgements This chapter was prepared following a presentation at the COST Conference in Berlin in May 2011 and I thank David Ingleby for the opportunity and his advice. I thank Mrs Anne Houghton for secretarial assistance. This text has been published as Bhopal, R.S., Research agenda for tackling inequalities related to migration and ethnicity in Europe, Journal of Public Health, Epub ahead of print (doi:10.1093/pubmed/fds004) and is reproduced here by kind permission of the Journal. References Arnold, M., Razum, O. & Coebergh, J.W. (2010). Cancer risk diversity in non-western migrants to Europe: An overview of the literature. European Journal of Cancer, 46(14), 2647-2659 available from: PM:20843493 Bartlett, C., Davey, P., Dieppe, P., Doyle, L., Ebrahim, S. & Egger, M. (2003). Women, older persons, and ethnic minorities: factors associated with their inclusion in randomised trials of statins 1990 to 2001. Heart, 89, 327-328. Beauchamp, A., Peeters, A., Tonkin, A. & Turrell, G. (2010). Best practice for prevention and treatment of cardiovascular disease through an equity lens: a review. European Journal of Cardiovascular Prevention and Rehabilitation, 17(5), 599-606 available from: PM:20562629 Becker, E., Boreham, R., Chaudhury, M., Craig, R., Deverill, C., Doyle, M., Erens, B., Falaschetti, E., Fuller, E., Hills, A., Hirani, V., Jotangia, D., Mindell, J., Natarajan, L., Stamatakis, E., Wardle, H. & Zaninotto, P. (2006). Health Survey for England 2004 – The health of minority ethnic groups, London: National Centre for Social Research. Bhala, N., Bhopal, R., Brock, A., Griffiths, C. & Wild, S. (2009). Alcohol-related and hepatocellular cancer deaths by country of birth in England and Wales: analysis of mortality and census data. Journal of Public Health, 31(2), 250-257. Bhopal, R., Fischbacher, C., Povey, C., Chalmers, J., Mueller, G., Steiner, M., Brown, H., Brewster, D.H. & Bansal, N. (2010). Cohort profile: Scottish Health and Ethnicity Linkage Study of 4.65 million people exploring ethnic variations in disease in

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Fischbacher, C.M., Bhopal, R., Povey, C., Steiner, M., Chalmers, J., Mueller, G., Jamieson, J. & Knowles, D. (2007a). Record linked retrospective cohort study of 4.6 million people exploring ethnic variations in disease: myocardial infarction in South Asians. BMC Public Health, 7(1), 142 available from: PM:17615055 Fischbacher, C.M., Bhopal, R., Steiner, M., Morris, A.D. & Chalmers, J. (2009). Is there equity of service delivery and intermediate outcomes in South Asians with type 2 diabetes? Analysis of DARTS database and summary of UK publications. Journal of Public Health, 31(2), 239-249. Fischbacher, C.M., Steiner, M., Bhopal, R., Chalmers, J., Jamieson, J., Knowles, D. & Povey, C. (2007b). Variations in all Cause and Cardiovascular Mortality by Country of Birth in Scotland 1997-2003. Scottish Medical Journal, 52(4), 5-10. Gill, J.M.R., Bhopal, R., Douglas, A., Wallia, S., Bhopal, R., Sheikh, A., Forbes, J.F., McKnight, J., Sattar, N., Murray, G., Lean, M.E.J. & Wild, S.H. (2011). Sitting Time and Waist Circumference Are Associated With Glycemia in U.K. South Asians. Diabetes Care, 34(5), 1214-1218. Hohmann, A.A. & Parron, D.L. (1996). How the new NIH Guidelines on Inclusion of Women and Minorities apply: efficacy trials, effectiveness trials, and validity. Journal of Consulting and Clinical Psychology, 64(5), 851-855 available from: PM:8916610 Hussain-Gambles, M., Atkin, K. & Leese, B. (2004). Why ethnic minority groups are under-represented in clinical trials: a review of the literature. Health and Social Care in the Community, 12, 382-388 available from: PM:15373816 Huxley, J.S., Haddon, A.C. & Carr-Sunders, A.M. (1935). We Europeans: a survey of ‘Racial’ problems, New York: Harper. Johnson, M.R.D. (2008). Making Difference Count: Ethnic Monitoring in Health (and Social Care). Radical Statistics, 96, 38-45. Johnson, M.R.D. (2003). Research governance and diversity: Quality standards for a multi-ethnic NHS. Journal of Research in Nursing, 8, 27-35. Kelaher, M., Paul, S., Lambert, H., Ahmad, W. & Smith, G.D. (2009). The applicability of measures of socioeconomic position to different ethnic groups within the UK. International Journal for Equity in Health, 8, 4 available from: PM:19250528 Krasnik, A., Joost, M.J., Sonne, N.A. & Nørredam, M. (2002). Communication, attitudes and knowledge among Danish hospital staff in relation to immigrants. European Journal of Public Health, 12, S69-S70. MacPherson, W. (1999). The Stephen Lawrence inquiry report, London: Her Majesty’s Stationery Office. Marmot, M. (2005). Social determinants of health inequalities. Lancet, 365, 1099-1104 available from: PM:15781105 Marquez, M.A., Muhs, J.M., Tosomeen, A., Riggs, B.L. & Melton III, L.J. (2003). Costs and Strategies in Minority Recruitment for Osteoporosis Research. Journal of Bone and Mineral Research, 18, 3-8. Mathews, G., Alexander, J., Rahemtulla, T. & Bhopal, R. (2007). Impact of a cardiovascular risk control project for South Asians (Khush Dil) on motivation, behaviour,

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obesity, blood pressure and lipids. Journal of Public Health, 29(4), 388-397. Netto, G., Bhopal, R., Lederle, N., Khatoon, J. & Jackson, A. (2010). How can health promotion interventions be adapted for minority ethnic communities? Five principles for guiding the development of behavioural interventions. Health Promotion International, 25(2), 248-257. Nielsen, S.S., Krasnik, A. & Rosano, A. (2009). Registry data for cross-country comparisons of migrants’ healthcare utilization in the EU: a survey study of availability and content. BMC Health Service Research, 9, 210 available from: PM:19922657 Nørredam, M., Nielsen, S.S. & Krasnik, A. (2009). Migrants’ utilization of somatic healthcare services in Europe – a systematic review. European Journal of Public Health, 20(5), 555-563. Rafnsson, S.B. & Bhopal, R.S. (2009). Large-scale epidemiological data on cardiovascular diseases and diabetes in migrant and ethnic minority groups in Europe. European Journal of Public Health, 19(5), 484-491. Ranganathan, M. & Bhopal, R. (2006). Exclusion and Inclusion of Nonwhite Ethnic Minority Groups in 72 North American and European Cardiovascular Cohort Studies. PLoS Med, 3(3), 0001-0008 available from: http://www.pubmedcentral.nih.gov/ articlerender.fcgi?artid=1324792 Razum, O., Spallek, J., Reeske, A. & Arnold, M. (2011). Migration-sensitive Cancer Registration in Europe, Frankfurt am Main: Peter Lang. Salway, S., Allmark, P., Barley, R., Higginbottom, G., Gerrish, K. & Ellison, G.T.H. (2009). Social research for a multiethnic population: do the research ethics and standards guidelines of UK Learned Societies address this challenge? Twenty-First Century Society: Journal of the Academy of Social Sciences, 4(1), 53-81. Salway, S., Barley, R., Allmark, P., Gerrish, K., Higginbottom, G. & Ellison, G. (2011). Ethnic diversity and inequality: ethical and scientific rigour in social research, York: Joseph Rowntree Foundation. Scottish Executive 2002. Fair for All: Working Together Towards Culturally-Competent Services, Edinburgh: Scottish Executive NHS HDL(2002) 51. Sheikh, A. (2006). Why are ethnic minorities under-represented in US research studies? PLoS Med, 3, e49 available from: PM:16370583 Sheikh, A., Halani, L., Bhopal, R., Netuveli, G., Partridge, M.R., Car, J., Griffiths, C. & Levy, M. (2009). Facilitating the recruitment of minority ethnic people into research: qualitative case study of South Asians and asthma. PLoS Med, 6(10), e1000148 available from: PM:19823568 Sheikh, A., Netuveli, G., Kai, J. & Panesar, S.S. (2004). Comparison of reporting of ethnicity in US and European randomised controlled trials. British Medical Journal, 329, 87-88 available from: PM:15138158 Stronks, K., Kulu-Glasgow, I. & Agyemang, C. (2009). The utility of ‘country of birth’ for the classification of ethnic groups in health research: the Dutch experience. Ethnicity and Health, 14(3), 1-14 available from: PM:19052941 The Department of Health (1999). Health Survey for England 1999: the health of minor-

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ity ethnic groups, Vol 1 and Vol 2, London: Her Majesty’s Stationary Office. The Home Office (2001). Race Relations (Amendment) Act 2000: New Laws for a Successful Multi-Racial Britain London: Home Office Communication Directorate. The Scottish Ethnicity and Health Research Strategy Working Group (2009), Health in our Multi-ethnic Scotland: Future Research Priorities, Edinburgh: NHS Health Scotland, Scottish Government. UNESCO (1952). The Race Concept: results of an enquiry, Paris: UNESCO. Venkatapuram, S. & Marmot, M. (2009). Epidemiology and social justice in light of social determinants of health research. Bioethics, 23(2), 79-89 available from: PM:19531161 Wendler, D., Kington, R., Madans, J., Van Wye, G., Christ-Schmidt, H., Pratt, L.A., Brawley, O.W., Gross, C.P. & Emanuel, E. (2006). Are racial and ethnic minorities less willing to participate in health research? PLoS Med, 3, e19 0001-e19 0010 available from: PM:16318411 WHO Regional Office for Europe (2010). How health systems can address health inequities linked to migration and ethnicity, Copenhagen: WHO. Williams, D.R., Lavizzo-Mourey, R. & Warren, R.C. (1994). The concept of race and health status in America. Public Health Reports, 109, 26-41. Williams, R., Wright, W. & Hunt, K. (1998). Social class and health: The puzzling counter-example of British South Asians. Social Science and Medicine, 47(9), 1277-1288. World Health Organization (2010), Health of Migrants – The Way Forward: Report of a Global Consultation, Geneva: WHO.

Problems and barriers in the collection of ethnicity and migration related data

Chapter 2

Problems and barriers in the collection of ethnicity and migration related data

Mark Johnson

1. Summary Drawing primarily on, but not confined to the experience of the UK in developing systems to collect ethnicity data, this chapter explores some of the demands for, barriers to, and uses of collecting information on the ethnic or migration backgrounds of people in the health care context. The UK has a long experience in this field, based on (inter alia) a Home Office ‘Ethnic Monitoring Development Project’ between 1990 and 1993, the introduction of training and experimental ethnic monitoring in the NHS, and current controversies and problems of implementation in NHS Information Systems. This experience has contributed to policies to combat inequalities across six strands, which have generated a number of initiatives requiring data from such monitoring. Examples of similar initiatives and projects across Europe seem to be harder to find, although there is growing interest and activity relating to multiple strands of discrimination, which are likely to grow in salience, and the development of good practice in this field. 2. Introduction Routine collection of more detailed data is key to improving knowledge.1 It is a commonplace of all social policy development that a prerequisite for effective action is the availability of evidence. As Raj Bhopal stresses in Chapter 1, lack 1 Pollock & King, 2009.

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of evidence may lead to calls for change being ignored on the grounds that there is no data to demonstrate its necessity. The introduction of any system of quality assurance or output management in itself generates change. That which is measured, can be aimed at; that which is left unobserved, can be ignored. When dealing with the health and wellbeing of socially excluded and relatively powerless groups, these facts assume even more importance. We live in an era of ‘evidence-based medicine’, in which the collection of accurate and appropriate information has become more important than ever for the development of improved policies and practices in the health system. But bold innovations have always depended on good data: without the rise of the science of epidemiology, the connection between the causes of diseases and their prevention or cure would be almost impossible. The observations of John Snow in the mid19th century led to the establishment of a connection between contaminated water in the Broad Street pump and the outbreak of cholera: more recently, the international restrictions on smoking tobacco in public places date from the links made by (amongst others) Doll & Hill (1950). However, as we have also seen in the previous chapter, in the majority of European countries, detailed, comprehensive and accurate information on the health of migrants is lacking (Rafnsson & Bhopal, 2009; Padilla & Pereira Miguel, 2009), thus limiting the possibilities for monitoring and improving migrant health and for conducting comparative studies on inequalities in health and access to health care (Rechel et al., 2011; Kraler & Reichel, 2010; WHO, 2011). At present, diseasespecific population based registers with data on ethnicity or migrant status are available only in Germany, England, Scotland and Sweden (and then only for a limited number of conditions). Germany and Sweden do not register data on ethnicity, only on country of birth. The situation may be improving slightly, because in 2008–9 registry data on health care utilization allowing for some identification of migrants at national or regional levels were found to be available in 11 of the 27 EU member states (Nielsen et al., 2009). In all 11 countries, these utilization data were available for hospital care (although with varying detail), while only a few countries collected data on care in outpatient settings. Perhaps the country with the longest history of recording data on the ‘racial’, ethnic or cultural origin of the individual is the United States – famously a nation of immigrants, although migrant status itself (perhaps because it is so common) has never been a routine part of administrative data there. One legacy of the Civil Rights Movement of the 1960s and 1970s was the introduction of ‘ethnic record keeping and monitoring’ in all federally supported activities, in order to support Contract Compliance and the specifications of the 1964 Civil Rights Act. More recently, the US Department of Health & Human Services, under the authority of the Patient Protection and Affordable Care Act (the health care reforms signed into law by President Obama in March 2010) has recently published revised standards for

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data collection on race, ethnicity, sex, primary language and disability status (HHS, 2011). In Europe, however, resistance to recording of such personal data, as well as the drive to defend the privacy of information, have been strengthened by legislation such as the European Data Protection Directive (Directive 95/46/EC 24.10.1995). These regulations state quite clearly (and with good reason, in view of the experiences of 1939-45 and more recent ‘ethnic cleansing’ events) that ‘personal data must (only) be collected for specified, explicit and legitimate purposes’. Furthermore in Article 8 it is laid out in detail that Member states shall prohibit the processing of personal data revealing racial or ethnic origin, political opinions, religious or philosophical beliefs, trade union membership and … data concerning health or sex life. 2

Nevertheless, further sub-sections of the Directive go on to explain that data may be collected when the subject gives ‘explicit consent’; or where such data are necessary to ensure compliance with employment law; or when public interest (e.g. public health concerns) dictates that such data are necessary and assurance is available that the rights and safety of the individual will be safeguarded (see Johnson, 2008). In the UK there has been significant progress towards the collection of ‘ethnicity’ data (i.e. information on the ‘ethnic group’ origins of service users) across health and social care services. Even here, however, there are huge gaps and to this day, no information (other than perhaps birthplace on death certificates) is collected in the UK on ‘migrant status’. There has been a campaign to include information on ethnicity on birth and death certificates but this has not so far been successful except in Scotland, where a voluntary option has been introduced, as of January 2012, to record ethnic origin on death certificates. Even in respect of routine medical records, progress in recording ethnic group identity has been slow. Some other countries, notably the Netherlands, Germany, Belgium and Sweden, do carry out research on migrant health, but in practical terms of policy and service development the topic is still in its infancy (Rechel et al., 2011). Even in those countries that do collect some routine health data by migrant status, information on the most vulnerable groups of migrants, such as asylum-seekers or undocumented migrants, is generally lacking. This, of course, makes it difficult to argue for change. What is not recorded, cannot be proven. What cannot be proven, cannot be addressed. One reason for the widely diverging policies that exist in Europe is that the European Community explicitly reserves responsibility for health services to national governments – the principle of ‘subsidiarity’. However, this principle is subverted 2 Directive 95/46/EC 24.10.1995

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by measures such as Regulation (EC) No. 763/2008 of the European Parliament and of the Council of the European Union on population and housing censuses (EC, 2008). This obliges member states to submit data on a range of indicators to the EC (i.e. Eurostat) when collecting census data. Some of these indicators might be of value to the study of diversity in health and health care, since several relate to migration, including place of usual residence, country or place of birth and country of citizenship, and whether individuals whose ‘cases’ are recorded had ever resided abroad, including their year of arrival in the country (from 1980), with additional information on their previous place of usual residence and date of arrival in the current address as well as their place of usual residence one year prior to the census. Hopefully the implementation of this regulation at the national level will lead in due course to an improvement in data availability in relation to the status and needs of migrants, since a good population baseline against which ‘rates’ can be calculated is essential in epidemiology (Rechel et al., 2011). There is little value in counting occurrences of a phenomenon without an idea of the total population ‘at risk’, so that prevalence rates can be calculated. Such calculations, however, may be complicated by the fact that older migrants may retire outside the country where they have been living – usually returning ‘home’ in the hope that they will be buried alongside their families. No source of data exists to monitor this phenomenon and enable calculation of more accurate prevalence rates. If census and administrative, routinely collected data do not contain information on the variables of interest, then scientists have to rely on data collected in population surveys, clinical research or disease registers. Unlike census data, which households are legally obliged to provide, information collected by researchers may be incomplete; in particular, the percentage of minority members responding may be different from that of majority members. Studies of clinical populations may also be distorted by the fact that access to health care for minorities is impaired (Ingleby, 2009). In England, the collection of data on ethnicity is (at least in theory) compulsory in secondary care (excluding outpatient care, accident and emergency care) and in community settings (Mladovsky, 2009). However, in 2007–08, there was only an 86% coverage of ethnicity in hospital episode statistics (Jayaweera, 2010). Although the Department of Health offered a small incentive to primary care practitioners (general practice doctors) to record ethnic group identity during registration of new patients in 2008-9 (under the ‘Quality & Outcomes Framework’ incentives payment scheme), this had little lasting effect and was withdrawn after two years. The availability and use of data from routinely collected statistics and survey or research sources are further discussed in Chapters 1 and 3 of this volume.

Problems and barriers in the collection of ethnicity and migration related data

3. Definitions: first define your parameters As the above introduction demonstrates, a primary problem is defining exactly what measure one should use: country of birth, citizenship, ‘race’, ethnicity, culture or migrant status. The following cartoon from the USA gives a light-hearted illustration of the dilemma.

Secret Asian Man © 2011 (reproduced by kind permission of Tak Toyoshima)

Another driver of inequities is linguistic proficiency – or the lack of it. Language barriers (and the failure to provide resources for overcoming them, such as language instruction or interpretation) impede both social integration and effective health care. Clearly, the best indicator to collect is the one most closely related to the factors believed to drive inequities; but as we have seen, the choice of variables is often limited by political or ideological constraints, and one variable may have to be used as a proxy for another. Country of birth, for example, is often used as a proxy for ethnicity. However, it may be a very unreliable proxy, especially in former colonial powers such as the UK, France, Spain, Portugal, Belgium, the Netherlands or Italy – where ‘white settlers’ could be born and raised in the colonies, and natives of those could be entitled by citizenship to move to the ‘mother country’. In Britain during the 1960s it was estimated that at least 10% of the ‘Indian-born’ population was in fact ‘White British’. Today, more than half of the ‘black and minority ethnic’ population is estimated to have been born in the UK. Nationality can be an equally misleading category. Refugees from third world countries maybe be granted asylum, then citizenship, and now move freely across EU boundaries – though they may still retain their traditional cultures and languages. In 2007, 30% of the foreign-born population of Belgium had acquired Belgian nationality (ADWA, 2009). In Germany, many migrants are of ‘aussiedler’ origin, holding German nationality but having grown up in other countries. Despite being German ‘nationals’, they may share many of the problems of immigrants.

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Many of the variables associated with minority ethnic or migrant status are also correlated with issues of poverty or lower levels of educational and information achievement, and these also have their impact on health outcomes, and the ability to benefit from health services. Almost any measure of social stratification, including nationality, ethnicity, ‘race’, religion and migrant origin, may generate statistics which demonstrate inequalities in health. The debate about which variables to focus on is far from resolved. In the UK, a degree of consensus has been reached over the use of the variable ‘ethnicity’, despite its shortcomings. The label ‘Indian or British Indian (Asian)’, for example, includes the possibility of membership of at least four major language groups (Punjabi, Hindi, Gujerati or Urdu), as well as many smaller tongues including a variety from south India such as Malayalam, spoken by increasing numbers of more recent, ‘high-skilled’ workers, many of whom are also fluent in English, which remains for the more educated classes, the lingua franca of India. ‘Indian’ people also belong to all of the world’s main faiths (including Christianity, Islam, Sikhism and Buddhism – and Judaism); many are vegetarian but not all, and while some groups eschew alcohol, and others avoid tobacco, local cultural groups provide many exceptions to an ‘ethnic stereotype’. Similarly, while the vast majority of people of ‘Pakistani’ or ‘Bangladeshi’ heritage in Britain are Muslim and speak (respectively) Urdu (or a Kashmiri dialect thereof), or the Sylhetti dialect of Bengali, there are many exceptions. As long as these categories are not applied rigidly, they can be useful. How this can be used sensitively is shown, for example, in the reports of the Princes Park Health Centre in Liverpool’s ‘patient profiling’ exercises (Public Health Sector Group, 2000). Ethnicity is normally supposed to be ‘self identified’, although generally a set of categories is supplied from which to choose (Fischbacher, 2005). These categories relate those used in the national Census, to enable the use of baseline data and calculation of prevalence rates (Knight et al., 2009). Census categories are not timeless: in 2011, the Office of National Statistics added the category ‘Arab’ to the English Census list, (and in Scotland, a sub-category ‘Polish’ to the category ‘White’), and local authorities may also provide tick-boxes for ‘Kashmiri’ (Pakistani) or Somali, Kurdish and other groups when collecting local data. 4. A National case study A brief case study of the development of ‘ethnic monitoring in Britain may help to illustrate many of the problems and barriers. It is worth noting that certain factors may be peculiar to the UK case – notably, a nostalgic attachment to the ‘Empire on which the sun never set’ and resistance to the idea of dividing up its citizens; and staunch opposition to allowing the government to ‘poke its nose into private matters’.

Problems and barriers in the collection of ethnicity and migration related data

The first ‘modern’ census in the UK was taken in 1801, but the first four censuses (1801–1831) were mainly headcounts, and asked for very little personal information. The 1841 Census, in which for the first time, there was a question on ‘birthplace’ (described as either England, Scotland, Ireland or Foreign) was also the first to record the names of everyone in the household. From 1851 onwards the census has recorded the stated age and relationship to the head of household for each individual. It was not until 1920 that the Census Act permitted ‘Race’ to be added to census forms, but no action was taken under this ruling, although the national sample survey known as the General Household Survey (GHS) first recorded ‘White/ Coloured/ Not seen’ in 1971, following controversy over immigration in the 1960s. In 1977-8 the National Dwelling & Household Survey was the first to include a question on ‘self-reported ethnic/racial group’, and this question was also used in subsequent GHS rounds. It had been intended that the question would also be used in the 1981 Census,but following the election of a Conservative government under the leadership of Mrs Thatcher, a decision was taken almost at the last moment to drop it from the forms, just as they were about to be printed: no official explanation was ever given. Meanwhile, concern about the situation of minority children in the social care system was growing, and in 1985 local authority Social Services departments began a pilot exercise to collect ‘ethnicity’ data, largely on children in care (see Barn, 1993). The Civil Service and Army began ‘Ethnicity Record Keeping and Monitoring’ (ERKM) data recording on recruits/employees in 1987-88, and in 1989 Religion monitoring was enforced in employment records in Northern Ireland. The value of such data was becoming apparent to people in the administration as a means of combating discrimination and reducing inequality, and in 1990 the Department of Health announced that ERKM would be a mandatory element in NHS patient data records. By 1991 there was sufficient evidence that such questions were acceptable, and the Census of that year was the first in Europe to carry an ethnic group question. Publication of such data was encouraged by the provisions of the 1991 Criminal Justice Act (Section 95) which required the Secretary of State to make annual reports to Parliament on the proportions of black and minority ethnic people in the criminal justice system. In order to promote the use of the technique of ethnic monitoring, the NHS set up in 1991 an experimental project in Coventry, asking for details of language and religion alongside ethnic origin (Johnson et al., 1993). This grew into a wider project supported by the Home Office which sought to encourage ERKM across Housing, Town Planning, Environmental Health, Social Services, Education, Social Services, Recreation & Arts – i.e. all local authority services, as well as health. Findings of this project were positive, in that it was discovered that the data collected provided useful

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information for service planning; but at the same time, a number of obstacles came to light. Not the least of these were the objections raised by administrative staff, who feared that service users would be offended or see such enquiry as discriminatory. In fact, when surveyed, the service users were in general very happy to provide additional information, if they felt that it would improve their care and allow them to mention key aspects of their identity which they felt required respecting. Indeed, many ‘white British’ people expressed gratitude that they could record this identity, or express a specific religious belief or affiliation, as did migrants of European origin, perhaps feeling that this gave them parity of esteem with the minority ethnic groups. The problem, remained, however, that some clerical staff felt embarrassed at asking the question and complained that it was too ‘sensitive’. In fact, all health services require very sensitive data on age, private behaviours and relationships: the confidentiality of such data is seldom questioned, and neither is the necessity of collecting it. Once embedded in a patent’s records, too, this data need not be asked again, except on the occasional review or audit, to confirm the file is accurate and up-to-date. It is hard to avoid the suspicion that such objections might have been a cover for other fears: perhaps that the data might reveal patterns of inequality or discrimination that administrators would rather deny. However, other objections were also raised – e.g. that such data were indeed recorded in some places, but had never been used. It is certainly true that there is no value in collecting unused and unusable data, and that there were locations where large amounts of ‘ethnicity’ data had been collected, stored, and never analysed. The development of a national baseline in the Census, and the growth of equality-rights focused campaigns and professions, has however eventually lead to the publication of influential reports using the data (see e.g. Szczepura, 2005; Knight et al., 2009). Furthermore, there is growing recognition of the fact that these questions can uncover families at risk of certain inherited conditions such as sickle cell anaemia, which provides a clinical justification for them (Aspinall et al., 2003, Dyson et al., 2007). Once it had been shown that such data could be asked, recorded, and usefully used in health services, it was agreed that ‘ethnic group’ would be a mandatory element of data collection for all inpatient (i.e. hospital-based) care episodes in the NHS, although this was not made mandatory until April 1994 – and even then, failure to collect was never penalised (Bardsley et al., 2000). Reports continue to show that there is a great deal of variation between health authority bodies in the degree of compliance: as recently as 2007, the national Diabetes audit reported that “Recording of ethnicity remains poor and has decreased from the previous audit year (down from 35.74 per cent to 31.99 per cent of records”). London Strategic Health Authority (SHA) has the highest recording of ethnicity at 55.66 per cent, and South West SHA the lowest at 13.28 per cent. Such unevenness of data capture is not confined to the UK. Despite a long tradition and legal mandate for such data in the USA, levels

Problems and barriers in the collection of ethnicity and migration related data

remain surprisingly variable: the Centres for Disease Control National Electronic Telecommunications System for Surveillance (NETTS) found that 59% cases had missed race data and 40% were missing ethnicity in Massachusetts. Sex and age data, on the other hand, were complete in 95-99% cases (Chen et al., 2003). Recording ethnicity is important for yielding maximum understanding of results and for planning appropriate responses (NHSIC, 2008:6). Given that diabetes-related care is one of the major items of expenditure in the health sector, and that people of minority ethnic origin in the UK are estimated to be at up to six times the usual risk of developing this disease, the widespread failure of monitoring has worrying implications for practice and policy. Similar arguments have been put forward in relation to most other public health priority areas (Szczepura, 2005). Strong pressure to collect ethnic data only began to be placed on public sector bodies after the passing of legislation inspired by the ‘Macpherson report’ (Macpherson, 1999) into institutional discrimination following the death of Stephen Lawrence, a young Black man stabbed to death in a south London street. The Race Relations Amendment Act 2000, which came into force in April 2001, placed a statutory duty upon the NHS and other UK public service agencies to “have due regard to the need to eliminate unlawful discrimination”, and to ensure that every new action or policy “considers the implications for racial equality”: this has been understood to require the collection of data to demonstrate compliance with the law. Additional incentives, however, were felt to be required, and in 2008, for two years, the Department of Health also offered small ‘Quality & Outcomes Framework’ incentive payments to GPs to collect ethnicity in primary care at registration of new patients, in the hope that this would ‘populate’ the universal care records which were intended to form the basis of a new universal administrative spine for the whole health care system. This decision was perhaps influenced by a study which showed that for small medical practices, especially those in deprived areas, there were real costs involved in updating their administrative records systems (Jones & Kai, 2007). That said, over the past few years, there have been numerous re-organisations of the NHS and its administrative and computer-based data recording systems, and it has also been noted that this reduces significantly the ‘opportunity cost’ of introducing an additional data field, providing that the design of additional fields is included in the set-up processes. 5. Conclusion It is possible to collect data on ethnicity or migration origin and to demonstrate its value for health care design and management. The experience of the UK, based on the development of both its national statistical database as exemplified in the Census and national surveys, and its administrative health and social welfare data

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systems, developed through the Ethnic Monitoring Development Project and the NHS equality and diversity structures, can be encapsulated in a series of short “do’s and don’ts” (cf. Jones, 1995): – The existence of ‘Champions’ (i.e. political leadership and ownership) is an essential precondition, along with support from communities, managers and staff. Most important of all, however, is political acceptance of the value and necessity of the data. – Agreement on the value of any data for clinical or policy purposes and the factors to be measured (whether migration origin, citizenship status, ethnicity, language or faith) is essential, and can be supported by reference to research: it would be helpful to identify areas where such data could be published and where there is scope, or a desire, to change, policy. – There are a number of other practical questions that can smooth the introduction of new elements of data capture, including an understanding of the best place in the ‘patient journey’ to make the initial enquiry, and a way to record it so that data while kept securely, can be shared between relevant agencies so as to reduce the necessity for repetitive asking. In the light of continuing technological improvements and the development of administrative systems, it is best to ensure that this is ‘built in’ to the launch of new systems, rather than requiring ‘retro-engineering’ to established ones. – There is considerable experience available on the best ways of asking questions, including the design of ‘show cards’ and information campaigns to give reassurances about the process and its value. Standardised questions that can be utilised in, and compared across, national systems are desirable, and enable local data to be related to national or regional patterns. However, this does not preclude local development of sub-categories where appropriate for local purposes. – Data have little value unless something is done with them, and there is a need to ensure that their collection and use is tied to other policies such as targets and expectations relating to equity or fairness. These should be linked to incentives, or penalties for non-compliance, and to action plans: this will also reassure minority communities that there is a reason to provide the data being asked for. – Where possible, it is desirable to find examples of good practice, or to create pilot projects which can be used to demonstrate both the feasibility and utility of the process.

Problems and barriers in the collection of ethnicity and migration related data

– Finally, it is essential that the data once collected (even if initially flawed in quality or coverage) should be analysed and used to make changes or justify policy actions, and to allocate resources to demonstrate their value (including the risks of non-collection). In this way, resistance to their collection can be weakened. In conclusion, it needs to be said that all of this will be a waste of time if academics and policy makers continue to haggle over minutiae and detailed criticisms of design, rather than focusing on the bigger picture and showing their commitment to notions of equity and diversity in welfare provision. As the present volumes show, there are many shared issues across Europe in relation to the well-being of people with a minority and/or migrant background. References ADWA (2010). De immigratie in België: aantallen, stromen en arbeidsmarkt, Brussel: Algemene Directie Werkgelegenheid en Arbeidsmarkt. http://bit.ly/GXGywJ Ahdieh, L. & Hahn, R.A. (1996). Use of the terms ‘race,’ ‘ethnicity,’ and ‘national origins’: a review of articles in the American Journal of Public Health, 1980-1989’. Ethnicity and Health, 1, 95-8. Aspinall, P.J., Dyson, S.M. & Anionwu, E.N. (2003). The feasibility of using ethnicity as a primary tool for antenatal selective screening for sickle cell disorders: pointers from the research evidence. Social Science and Medicine, 56(2), 285-297. Bardsley, M., Hamm, J., Lowdell, C., Morgan, D. & Storkey, M. (2000). Developing health assessment for black and minority ethnic groups: analysing routine health information, London: East London & City HA for Health of Londoners Project, NHSE. Barn, R.K. (1993). Black children in the public care system, London: Free Association Books. Bhopal, R.S. (2006). Race and ethnicity: responsible use from epidemiological and public health perspectives. Journal of Law and Medical Ethics, 3, 500-7. Chen, J., Etkind, P., Coman, G., Tang, Y. & Whelan, M. (2003). Eliminating missing race/ethnicity data from a sexually transmitted disease case registry. Journal of Community Health, 28(4), 257-65. Department of Health (2005). A practical guide to ethnic monitoring in the NHS and social care, London: DH/Health and Social Care Information Centre/NHS Employers. Department of Health (2007). A practical guide to ethnic monitoring in the NHS and social care London: DH. http://bit.ly/yLuILX Doll, R. & Hill, A.B. (1950). Smoking and Carcinoma of the Lung. British Medical Journal, 2(4682), 739-748. Dyson, S.M., Chambers, K., Gawler, S., Hubbard, S., Jivanji, V., Sutton, F. & Squire, P. (2007). Lessons for intermediate- and low-prevalence areas in England from the

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Ethnicity Questions and Antenatal Screening for sickle cell/thalassaemia (EQUANS) study. Diversity in Health & Social Care, 4(2), 123-135. EC (2008). Regulation (EC) No 763/2008 of the European Parliament and of the Council of 9 July 2008 on population and housing censuses, Brussels: European Commission. http://bit.ly/wTNztB Fischbacher, C. (2005). Ethnic Monitoring Tool. Edinburgh: NHS Health Scotland. Available on the website of the NHS Scotland National Resource Centre for Ethnic Minority Health: http://bit.ly/zm72MT HHS (2011). Final Data Collection Standards for Race, Ethnicity, Primary Language, Sex, and Disability Status Required by Section 4302 of the Affordable Care Act, Washington: US Department of Health and Human Services. http://1.usa.gov/yysAjn Ingleby, D. (2009). European Research on Migration and Health. Background Paper for IOM project ‘Assisting Migrants and Communities (AMAC): Analysis of Social Determinants of Health and Health Inequalities’, Geneva: International Organization for Migration. http://bit.ly/Al2mld Iqbal, G., Gumber, A., Szczepura, A., Johnson, M.R.D., Wilson, S. & Dunn, J.A. (2008). Improving ethnic data collection for statistics of cancer incidence, management, mortality and survival in the UK. Warwick Medical School report to Cancer Research UK (Submitted as paper to BMJ, 2009) and available at www.ethnic-health.org.uk or http://bit.ly/xBIGNf Jayaweera, H. (2010). Health and access to health care of migrants in the UK, London: Race Equality Foundation. Johnson, M.R.D. (2008). Making Difference Count: Ethnic Monitoring in Health (and Social Care). Radical Statistics 96, 38-45. Johnson, M.R.D., Hardman. C. & Jones, A. (1993). Developing the Implementation of ethnic Monitoring: Final report to the Home Office, Warwick University: EMDP/CRER. Jones, A. (1995). Making Monitoring Work Coventry: Centre for Research in Ethnic Relations. Jones, M. & Kai, J. (2007). Capturing ethnicity data in primary care: challenges and feasibility in a diverse metropolitan population. Diversity in Health & Social Care, 4(3), 211-220. Knight, M., Kurinczuk, J.J., Spark, P. & Brocklehurst, P. (2009). Inequalities in maternal health: national cohort study of ethnic variation in severe maternal morbidities. British Medical Journal, 338: 1-7. Kraler, A. & Reichel, D. (2010). Statistics on Migration, Integration and Discrimination in Europe. Prominstat Final Report, Brussels: European Commission. Lin, S.S., Kelsey, J.L. (2000). Use of Race and Ethnicity in Epidemiologic Research: Concepts, Methodological Issues and Suggestions for Research. Epidemiologic Reviews, 22, 187-202. Makkonen, T. (2007). European handbook on equality data. Brussels: European Commission Directorate-General for Employment, Social Affairs and Equal Opportunities. http://bit.ly/xPP9zy

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Macpherson, W. (1999). The Stephen Lawrence Inquiry: Report of an Inquiry, London: Home Office. McKenzie, K. & Crowcroft, N. (1996). Describing race, ethnicity, and culture in medical research. British Medical Journal, 312, 1054. NHS IC (2008). National Diabetes Audit (2006-7) 2008. Leeds: The NHS Information Centre for Health and Social Care. http://www.ic.nhs.uk/nda Nielsen, S.S., Krasnik, A., Rosano, A. (2009). Registry data for cross-country comparisons of migrants’ healthcare utilization in the EU: a survey study of availability and content. BMC Health Service Research, 9, 210. Padilla, B., Pereira Miguel, J. (2009). Health and Migration in the EU: Building a Shared Vision for Action. In: A. Fernandes and J. Pereira Miguel (Eds.) Health and Migration in the European Union: Better Health for All in an Inclusive Society (pp. 8-14). London: Pro-Book Publishing Limited. http://www.pro-brook.com/images/PDFs/ Portugal%20EU%20health.pdf Pollock, W. & King, J.F. (2009). Inequalities in maternal health. British Medical Journal, 338, 357. Public Health Sector Group (2000). Ethnicity Profiling in Primary Care: The Princes Park Health Centre Model Liverpool: Public Health Sector Group, School of Health & Human Sciences, Liverpool John Moores University. Rafnsson, S. & Bhopal, R.S. (2009). Large-scale epidemiological data on cardiovascular diseases and diabetes in migrant and ethnic minority groups in Europe. European Journal of Public Health, 19(5), 484-91. Rechel, B., Mladovsky, P., Deville, W., Rijks, B., Petrova-Benedict, R., McKee, M. (2011). Migration and health in the European Union. Maidenhead: McGrawHill Open University Press, for European Observatory on Health Systems and Policies. Senior, P., Bhopal R. (1994). Ethnicity as a variable in epidemiological research. British Medical Journal, 309, 327-30. Szczepura, A. (2005). Access to health care for ethnic minority populations. Postgraduate Medical Journal, 81, 141-147. WHO (2011). Interim second report on social determinants of health and the health divide in the WHO European Region, Copenhagen: WHO Regional Office for Europe. http://bit.ly/yT0gFo Further Reading Baker, P. & Eversley, J. (Eds.) (2000). Multilingual capital—the languages of London schoolchildren and their relevance to economic, social and educational policies, London: Battlebridge. Johnson, M.R.D. (1993a). A Question of ethnic origin in the 1991 Census. New Community, 19(2), 281-289.

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Johnson, M.R.D. (1993b). The Introduction of Ethnic Monitoring: An evaluation of the Pilot project, Coventry: Coventry Health Authority & Walsgrave Hospital NHS Trust. Johnson, M.R.D. (1998). Ethnic monitoring: bureaucratic construction of a minority entity or identity. In: Williams, C., Soydan, H. & Johnson, M. (Eds.) Social Work and Minorities, London: Routledge, 79-90. Johnson, M.R.D. (2001). Ethnic Monitoring and Nursing. In Culley, L. & Dyson, S. (Eds.) Ethnicity and Nursing Practice, London: Macmillan/Palgrave (Chapter 4), 91106. Johnson, M.R.D., Boeck, T., Skinner, A., Fleming, J. with Gumber, A. & Owen, D. (2006). Availability of Data for Monitoring Community Cohesion: Interim report on a Scoping Study to the Home Office for the Institute of Community Cohesion, London: Home Office. Johnson, M.R.D. & Borde, T. (2009). Representation of ethnic minorities in research – Necessity, opportunity and adverse effects’. In Culley, L., Hudson, N & Van Rooij, F. (Eds.) Marginalized Reproduction: Ethnicity, Infertility and Reproductive Technologies (pp. 64-80). London: Earthscan. Johnson, M.R.D., Cross, M. & Cox, B. (1989). Paying for change? Section 11 and local authority social services. New Community, 15(3), 371-390. Johnson, M.R.D. & Gill, P. (1995). Ethnic monitoring and equity: Collecting data is just the beginning (editorial). British Medical Journal, 310, 890.

Using existing health information systems for migrant health research in Europe

Chapter 3

Using existing health information systems for migrant health research in Europe: challenges and opportunities

Katia Levecque, Fernando Garcia Benavides, Elena Ronda & Ronan Van Rossem

1. Introduction Compared to the United States, Canada and Australia, research in Europe on migrant health (by which we mean both migrants’ state of health and their use of health services) has been a late starter. One of the main reasons is a shortage of health data that make it possible to differentiate migrants from the indigenous population. As has been discussed in Chapters 1 and 2, European reluctance to gather migrant or ethnic health data has historical reasons and is infused by political and ethical concerns. European countries vary significantly in their approach to monitoring migrants and in their willingness to respond to migrants’ health needs. Moreover, to the extent that there is concern about health inequalities, the focus in Europe is not on migration or ethnicity but on socioeconomic status. This contrasts with the situation in the USA, where the terms ‘health discrepancies’ or ‘health disparities’ more often refer to racial or ethnic differences than socioeconomic ones. In this paper, we look at the challenges and opportunities of existing national health information systems for migrant health research in Europe. We look at both official registry datasets and (epidemiological) surveys and assess to what extent and under which conditions they enable us to compare the health (and care use) of migrants with those of the indigenous population. We first concentrate on possibilities and obstacles for research from a national perspective. We then address the additional methodological complexity that arises when researchers attempt cross-national comparisons. The chapter concludes with some methodological recommendations.

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2. Migrant health research: defining the subject When studying these topics, a first prerequisite is to define who should count as a ‘migrant’. Despite considerable research and debate, there is still no consensus on this issue. In the literature we see migrants being defined by foreign birth, foreign citizenship, or by their movement into a new country to stay temporarily (sometimes for as little as a year) or to settle for long periods or life. Some researchers even consider children who are born in a country, but whose parents are foreign-born or foreign nationals, as ‘second generation migrants’; others make a distinction between migrants and refugees or asylum seekers. Additional confusion arises because of the occasional conflation of migrants with ethnic or religious minorities, including indigenous minorities (such as the Roma or Sami populations). Another conflation appears with the concept of ‘race’, which was dominant until the Second World War but has mostly been abandoned in scientific debate since then – at least in continental Europe. In the USA, there is still a tradition of race-based analysis, though the modern use of the concept of race emphasises its social origins rather than its biological basis. In Europe, ‘race’ has largely been abandoned in favour of ethnicity (Bhopal, 2004). As Bhopal mentions, a potential problem with ethnicity as a research category is that it may not be stable over time and between contexts. The ethnic categories used in Canada and the UK differ greatly, for example, with some categories carrying different meanings and some having salience only in one setting. Furthermore, there has been change over time in both question wording and in response options in both countries (Salway et al., 2011). Countries differ considerably in the way they define ‘migrants’, both in official settings and in scientific research. Their choice is affected by the type of immigration affecting the country and the idiosyncratic way in which nations respond to similar political challenges (MEHO, 2009). – In most Western and Southern European countries migrants are usually described with reference to citizenship and country of birth. According to the OECD, European countries and Japan have traditionally focused on foreign nationals, while countries like the USA, Canada and Australia focus on the foreign-born (OECD, 2003). – A second and larger group of countries, including those of Eastern Europe, are marked by their attention to ethno-cultural questions, which help to define individual’s affiliation and place in the community. The emphasis placed on the religious dimension varies, but language and nationality/ethnicity are commonly used to describe populations.

Using existing health information systems for migrant health research in Europe

– A third and smaller group of countries in Europe, defining themselves more or less officially as multicultural, approaches population diversity by devising classifications which are designed to reflect the recent history of immigration, e.g. post-colonial or labour migration. In sum, the field of migrant health research is characterised by different conceptualisations of ‘migrants’, which poses a particular problem for consistency in scientific – but also public – debate. Behind the diversity lie difficult ethical issues, which have seldom been explicitly considered. In the future, if conceptual advances can be achieved and principles for operationalising the concept agreed upon, an internationally applicable glossary may emerge (Bhopal, 2004). However, while some researchers advocate working towards standardised instruments and categories across diverse settings, others (e.g. Aspinall, 2007) argue that the conceptualisation of who is a ‘migrant’ is so historically and geographically specific that such harmonisation is impossible and unwise. Noteworthy in this context is the effort by the United Nations, as early as 1953, to harmonise the conceptualisation and measurement of ‘migrant’ in order to make possible cross-national comparisons. This was done by a set of recommendations, which have been revised and updated twice (in 1976 and 1997), reflecting the need to address changes that occurred in the international context (such as emergence of new categories of migrants). In the most general sense, the 1997 revision (UN, 2001) defines an international migrant as “any person who changes his or her country of usual residence”. A further distinction is then made to separating long-term from short-term migrants. A longterm migrant is defined as a person who moves to a country other than his or her usual residence for a period of at least a year (12 months) and a short-term migrant as a person who moves for at least 3 months but less than a year. However, not much effort has been made by States to implement these recommendations. Such a nonbinding document lacks the power to impose compliance. 3. Available national health information systems in European countries: challenges and opportunities for migrant health research Defining who counts as a migrant is not just a technical issue, but has important implications for migration data and the analyses generated from such data. For research from a public health perspective, in which the state of health and service utilisation of migrants is compared to that of the indigenous population, two types of data-sets can be distinguished:

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1. Official registries. These datasets record information on all individuals that form the population of interest – for example, birth registers include all people born and death registers record all deaths. Some of these registries, such as cancer registers, contain medical information. 2. Surveys based on representative samples of the population. These may be carried out by government authorities or by academic researchers. Both types of data-sets involve specific challenges and opportunities to gain knowledge into health inequities according to migrant status. 3.1. Register-based studies on migrant health Only a very few of the studies on migrant health appearing in Europe are based on national register data (Nørredam et al., 2011). There are several reasons for this, the main one being the absence of indicators of migrant status and/or ethnicity in official registers. European countries vary markedly in their answer to the question whether national health authorities should register migrant status or ethnicity at all (see Chapters 1 and 2). The diversity in available registry-based data on migrant health care use has been reviewed by Nielsen et al. (2009), who showed that only 11 of 27 European countries have registry data on health care use that make it possible to identify migrants. Five countries (Austria, Belgium, Luxemburg, Poland and Slovenia) reported having information on citizenship, one country (Greece) reported information on country of birth, while five others (Denmark, Finland, Italy, the Netherlands and Sweden) reported having data on both. When health registries do not contain information on migrant status, linkage with other data files may offer a solution. One prerequisite for such linkage is of course the availability of migrant information in another data-set, whether it be census forms, population registers, or statistical data systems which combine administrative sources and population registers. Such data-sets are recognised as ‘official statistics sources’ by the Council of Europe (INED, 2007). In the official statistics sources of the EU27 countries, information on country of birth is available in all member states except Latvia and citizenship in all member countries but Latvia, Slovenia and the UK. Data on ethnicity or nationality is available in 13 countries: Bulgaria, Cyprus, Czech Republic, Estonia, Hungary, Ireland, Latvia, Lithuania, Poland, Romania, Slovakia, Slovenia, and the UK. Religion is recorded in 14 countries: Bulgaria, Cyprus, Czech Republic, Estonia, Hungary, Ireland, Latvia, Lithuania, Poland, Romania, Slovakia, Slovenia, The UK, and Austria. Language is recorded in 16 countries: Bulgaria, Cyprus, Czech Republic, Estonia, Hungary, Ireland, Latvia, Lithuania, Poland, Romania, Slovakia, Slovenia, Austria, Finland, Malta, and Portugal (MEHO, 2009). A prerequisite for linkage of data-sets is the availability of personal identification numbers. However, many European countries are reluctant to implement such an

Using existing health information systems for migrant health research in Europe

identification system due to historical reasons and political and ethical concerns. In Belgium, for example, linkage is possible in theory, but the Belgian Commission for the Protection of Privacy implements the privacy laws extremely strictly so that in practice, it is unlikely that a researcher would be given permission to analyse linked data on migrant health – even if it were anonymised. A similar situation applies in Spain. In some European countries, for example the UK, migrant health research is developing rapidly (Fischbacher et al., 2007; Hippisley-Cox et al., 2008), with linkage of primary and secondary care data-sets to the 2011 census being the next challenge. The potential for European linkage studies is considerable (Bhopal, 2009). Already huge advances have been made in using linkage to explore ethnicity and health in the Netherlands (Bos et al., 2002), Sweden (Hedlund et al., 2008) and Denmark (Nørredam et al., 2011). In the latter country, the unique opportunities for studying migration, ethnicity and health by means of linkage were exploited by Nørredam and her colleagues, who linked the Danish Cancer Registry, Psychiatric Research Register, National Patient Register, National Health Service Register, Injury Register and Medical Birth Register with registers of Statistics Denmark and the Civil Registration System.1 The linkage was performed using a unique individual identification number. This study demonstrated that register-based research on migration and ethnicity requires registration of well-defined categories and that objective definitions in Denmark are most often based on data about date of arrival in Denmark and own and/or parents’ countries of birth. These variables facilitate follow-up over time as well as comparisons between generations. In addition, the Danish Immigration Service registers data on migration status, nature of residence permit and length of asylum procedure, which can be used to distinguish forced migrants from those arriving to reunite families (Nørredam et al., 2011). The advantages of register-based data for migrant health research are clear. In principle, registries contain information on the entire population and are often more accurate than self-reports. Unlike most surveys they contain regularly updated information and are not hampered by low migrant response rates (Nielsen et al., 2009). But there are also disadvantages: for example, some groups may be underrepresented or totally absent from the registries. This could be due to a lack of equal access to health services, or because mistrust of the authorities inhibits these groups from giving reliable registry information, especially when they fear detection. In this sense, free access to health care for all – irrespective of legal status – might not only increase the use of health services, but also the reliability of registry data. In countries with complex registration systems for social health insurance, such as France, cumbersome bureaucracy is known to be a major barrier to accuracy 1 Another example of a study using extensive linking of data-bases is provided by Anders Hjern (this volume, Chapter 6).

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(Mladovsky, 2007). Another shortcoming of many registry data-sets is that birthplace information is not validated and may therefore be incorrect. Information about place of birth may be missing for migrants. A major problem resulting from these information gaps is that researchers may be left without a precise idea of the size of the migrant population. When two or more registries are used for analyses, an additional problem that might arise is a numerator/denominator information bias, for example with regard to country of birth. There is a risk of inflation of the denominator – ‘mobility bias’ – caused by some groups of immigrants having returned to their country (Khlat & Darmon, 2003). Particularly for immigrant mortality, the use of registry-based information can lead to systematic errors, since sizeable numbers of migrants who return to their country of birth in old age do this without the authorities knowing about it (Mladovsky, 2007). 3.2. Survey-based studies on migrant health Most studies on migrant health in Europe are based on surveys rather than official registry data. Mladovsky (2007) gave a useful overview of available migrant health indicators collected in surveys at different levels in Europe. This overview, part of which forms the basis for Table 1, describes the mode of data collection, the indicators available for health status and migration, and some important technical issues relating to the migration information. Another valuable overview of existing surveys is the MEHO Atlas (MEHO, 2009). This contains 23 maps depicting the availability of information in both registries and surveys on migrant status (measured in a variety of ways) in different health fields in European countries. The atlas shows that there are 33 data sources available in 18 countries which contain information on citizenship. Forty-one data sources in 16 countries report on country of birth, while information on self-reported ethnicity is available in only 8 data sources in 4 countries (namely the United Kingdom, Ireland, Latvia and Bulgaria). New EU member states, reflecting their low levels of immigration, rarely include indicators of migration in health surveys, but this may change in the future as the numbers of immigrants to these countries are also increasing. As Mladovsky (2007) reports, where surveys in Europe do include migration variables they mostly utilise a broad ‘social science definition’ of immigrant status, indicated by own and/or parental country of birth and length of stay in the host country. Conceptually, there are two main problems with this. Firstly, such definitions combine important subcategories of persons, such as refugees who may have a different health pattern than non-refugee migrants. Secondly, the paradigm does not capture legal status, which may affect state of health as well as access to and utilisation of health services. Other challenges include finding methodological solutions to low response rates for migrants and ethnic minorities in general surveys (see e.g. Lorant et al., 2008).

Using existing health information systems for migrant health research in Europe

Factors underlying low participation rates may include language problems as well as less positive experiences as receivers of general inquiries from official institutions in the host and home countries (Mladovsky, 2007; Nielsen et al., 2009; Schenker, 2010). Undocumented migrants seldom figure in national surveys because of the difficulty of locating them and their fear of arrest and deportation. Their numbers are in any case very small, so that targeted studies will be needed to obtain sufficient numbers of them. The latter problem often restricts the study of other subgroups of migrants. Heterogeneous groups of migrants are therefore often analyzed together despite wide divergences in their characteristics. In studies of migration, ethnicity and health, it is advisable to divide migrants into as many precise, specific, and meaningful categories as possible, and, as a minimum, to examine the impact of gender, age and SES (Nørredam et al., 2011). Unfortunately, in many datasets information on SES and migrant status are not collected simultaneously. In order to increase the participation of migrants in surveys, a recent study has recommended the use of interviewers with linguistic, cultural and social backgrounds that are similar to those of the study population. Administration of a survey in multiple languages could serve not only to increase participation, but also to obtain information from foreign-born workers not fluent in the host country languages (Declos et al., 2011). A point already mentioned by Raj Bhopal in Chapter 1 is that it is futile, and perhaps offensive, to expect a person who is illiterate to fill in a written questionnaire. 4. Cross-national comparative research in Europe When research on migrant health is carried out at the cross-national comparative level, the scientific endeavour becomes even more complex, reflecting additional conceptual and methodological problems. 4.1. Cross-national comparative migrant health research: Still in its infancy Increasingly, researchers on public health are setting up international collaborations and undertaking cross-national comparative studies. Up to now, only relatively few cross-national comparative studies have addressed migrant health, but the number is growing. In a recent article, Salway et al. (2011) noted that a review of the 10 issues of the journal Ethnicity & Health including and preceding volume 15(4) published in 2010 revealed that none of the 58 papers published included an international comparative dimension. Similarly the 10 most recent issues of the International Journal of Migration, Health and Social Care dating back from volume 6(1) published in 2010 included just four papers with an international comparative focus out of 43 original articles. Where such research has been undertaken, it has tended to focus on recent immigrants, rather than more established minorities (Salway et al., 2011).

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This scarcity of cross-national comparative studies on migrant health does not come as a surprise when seen in the light of the diverse definitions of ‘migrant’ that are in use (see Section 2) and the shortage of accessible and comparable data on health in which the definition of both the group and the variables being studied is identical and cross-nationally valid (see Section 3). An additional factor that might inhibit cross-national migrant health research is that sub-groups of migrants differ from country to country, and that the number in each sub-group (or even the total migrant population) might be very small in some countries (Nielsen et al., 2009). Bulgarians migrating to Greece, for example, might have very different characteristics from those migrating to Canada. These challenges to cross-national migrant health research are in addition to the many issues that might affect the comparability of all multi-country studies: cumulative or selective non-response, modes of data collection, translations and survey implementation, cross-national/cultural validity of concepts, indicators and scales (see e.g. Levecque et al., 2011). Rather obviously, the difficulty of finding comparable data-sets for cross-national research is related to the number of countries that one wishes to compare. Comparison of two or three countries is in principle methodologically less demanding than comparison of, for example, all EU countries. The MEHO Atlas (MEHO, 2009) shows that currently, cross-national comparative migrant health research based on registry data is only possible for a very limited number of countries, or for data from a specific register such as the one on mortality (Bhopal et al., 2011). For secondary analyses based on international surveys, however, the picture is somewhat different. In recent years, several international surveys have been set up that include information – albeit sometimes limited – on migrant health. In Table 1, we provide a description of key surveys which have collected information on both migration and health. 4.2. The added value of a cross-national comparative perspective on migrant health While the challenges of cross-national comparative research on migrant health are undeniably great, this form of research also has the potential to enhance the rigour and utility of research into migration and health. It does so in several ways (see e.g. Salway et al., 2011), but there are two promises that stand out. Firstly, cross-national comparative research can increase awareness of the processes of social construction involved in the study of migrant health. Much more than a local focus, a cross-national approach makes clear that the concepts and methods employed by researchers, and the knowledge these generate, are intimately bound up with social and historical relations and are not simply mirrors of natural phenomena (Salway et al., 2011). In migrant health research it can be noticed that the same term is used to mean different things, both within and across country settings. Certain terms may have pejorative connotations in one country while be-

 Self-perceived general health  Being hampered in daily activities  Temporary reduction of activity because of health problems  Hospitalization in past 12 months  Healthy life style indicators (e.g. smoking)

Work-related health problems (e.g. ear problems, backache, muscular pain in arms or legs, respiratory difficulties, etc.)

European Working Conditions Survey (EWCS) Aims at providing a comprehensive picture of the everyday reality of men and women at work. The survey was organised in 1990 (12 countries), 1995 (15 countries), 2000 (29 countries), 2005 (31 countries) and 2010 (34 countries)

Health indicators

European Community Household Panel (ECHP) An annual panel survey based on a representative panel of households and individuals in 15 EU-countries covering a wide range of topics (health, income, housing, etc.). The data gathering was yearly, starting in 1994 and ending in 2001

Survey

 EWCS 1990, 1995 and 2000: nationality  EWCS 2005: citizenship  EWCS 2010: country of birth

 Last foreign country of residence before coming to present country  Foreign country of birth  Citizenship

Migration indicators

EWCS 2005: in some languages ‘citizenship’ is translated as ‘inhabitant’, which is not equivalent

Change of health indicators over time.

Last foreign country of residence and foreign country of birth data are unavailable for Germany, the Netherlands and Spain. Citizenship data is unavailable for the UK (§)

Sample permits analysis of cohorts of immigrants that reached Western Europe before the mid 1990s. Because of the arrival of new immigrants; non-random sample attrition; and the absence of refreshments samples, the cross-sectional representativeness of the ECHP tends to deteriorate over time, negatively affecting its utility for immigrant health.

Remarks

An expanded and adapted version of Annex 3 from Mladovsky, P. (2007) Migration and health in the EU. Research note, Brussels: European Commission – Directorate-General Employment, Social Affairs and Equal Opportunities, Unit E1 – Social and Demographic Analysis.

Table 1. Key EU and international surveys collecting health and migration information

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 Self-perceived general health  Being hampered in daily activities  Center for epidemiologic depression scale (CESD-8)

 Self-perceived general health  Having a chronic illness or health problem  Limitations in activity due to health problem  Healthy life style indicators (e.g. smoking)

European Social Survey (ESS) Is a cross-sectional biennial survey which aims at charting and explaining the interaction between Europe’s changing institutions and the attitudes, beliefs and behavior patterns of its diverse populations. Cross-sectional data gathering was organised in 2002 (22 countries), 2004 (26 countries), 2006 (25 countries), 2008 (30 countries) and 2010 (20 countries). The questionnaire includes a ‘core’ module which remains relatively constant from round to round, plus two or more ‘rotating’ modules, repeated at intervals.

European Union Statistics on Income and Living Conditions (EU-SILC) Aims at collecting timely and comparable cross-sectional and longitudinal multidimensional microdata on income, poverty, social exclusion and living conditions. The EU-SILC was launched in 2006 in 7 countries. In march 2011, data for 29 countries are available.

Health indicators

A diversity of self-reported health indicators regarding  Cognitive function  Mental health (EURO-D scale)  Physical health  Behavioral risk  Grip strength  Walking speed

Survey of Health, Ageing and Retirement in Europe (SHARE) Multidisciplinary and cross-national panel database of micro data on health, socio-economic status and social and family networks of more than 45,000 individuals aged 50 or over. The study was organised in 2004 (12 countries), 2006 (15 countries) and 2008 (13 countries).

Survey

Migration indicators

 Country of birth  Citizenship

 Since when do you live in country  Country of birth (own, mother and father)  Citizenship  Belonging to an ethnic minority group

 Year come to live in country  Country of birth  Citizenship

Remarks

Limited sample size for migration analysis

ESS 2002 contains a rotating module on ‘migration’. ESS 2004 and 2008 contain a rotating module on ‘work, family and health/well-being’. ESS 2006 contain a rotating module on personal and social well-being.

Some of the generated health variables are based on slightly different question wording in the consecutive waves.

Questions on childhood illness included

62 Katia Levecque, Fernando Garcia Benavides, Elena Ronda & Ronan Van Rossem

Health questions are not included in all surveys, while some surveys specifically address health (e.g. EB73.2 organised in 2005 is informs on mental health in 27 countries).

Covers a variety of health conditions

WHO Health Surveys (WHOHS) The WHO has developed and implemented a Survey Programme and a World Health Survey to compile comprehensive baseline information on the health of populations and on the outcomes associated with the investment in health systems; baseline evidence on the way health systems are currently functioning; and, ability to monitor inputs, functions, and outcomes. The WHO Health Surveys are not restricted to Europe, but covers about 61 countries.

 Chronic conditions  Limitations in daily activities  Symptoms of emotional wellbeing

 Self-perceived general health

Eurobarometer (EB) Is a series of surveys on the public opinion of the European population, organised for the European Commission since 1973. Several topics are investigated: social conditions, health, culture, information technology, environment, currency, etc. There is great variation in participating countries depending on the topic of consideration.

Generations & Gender Survey (GGS) Aims at improving the knowledge base for policy-making in UNECE countries. The GGS is a panel survey of a nationally representative sample of 18-79 year-old resident population in each participating country with at least three panel waves and an interval of three years between each wave. Wave 1 is organised in 20082010 (12 countries).

The information varies across survey years, e.g. 2002: ethnic group, 2001: country of birth (own, mother and father)

The information varies across the surveys, but is usually based on country of birth (own, sometimes also of mother and father).

 Date of arrival in country  Age at which permanent residence in country was obtained  Country of birth (own and of mother)  Nationality  Nationality at birth  naturalisation

Different indicators across the years.

Different wording across surveys.

The questionnaires for the first wave may contain substantial differences in the various participating countries.

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ing acceptable in another; they may be commonplace in one setting but have no conceptual equivalent in another. An example is given by Salway et al. (2011) in their comparative study on maternal health in Germany, Canada and the UK. The term ‘migrant’ in Canada carries the connotation of temporary or seasonal movement, while ‘immigrant’ refers to someone who has moved to the country with the intention of settling permanently. In the UK, by contrast, both terms are used fairly interchangeably. However, the UK researchers warned of the negative connotations that the term ‘immigrant’ can carry, and noted that for this reason researchers generally use the term ‘migrant’ instead. Neither ‘migrant’ nor ‘immigrant’ would normally be used to describe the children or grandchildren of people who had migrated to the UK. Similarly, though the terms ‘foreign-born’ and ‘of foreign origin’ have been used in the UK, they carry distasteful associations and for that reason are sometimes avoided. In contrast, the term ‘migrant’ is not rejected by German scholars for the second generation and is not perceived as ‘othering’ or excluding. Nevertheless, some German researchers have opted to use the phrase ‘individuals with a migration background’ rather than ‘second-generation migrant’. As this example shows, a cross-national comparative focus makes visible takenfor-granted assumptions and underlying ideologies that may not become apparent in single-country studies. In addition, it also reveals the arbitrariness of particular categorisations and concepts. In this way it highlights the danger that the adoption of standardised terminology and rigid classifications will encourage the reification of concepts, whereby shifting, dynamic processes become ‘frozen’ in time. Research needs to be framed in ways that move beyond fixed groups and categories and look at dynamic processes of identification, inclusion and exclusion (Salway et al., 2011). Secondly, cross-national comparative research offers the potential for new insights into the way in which the wider socio-political context impacts on health, health care use and health inequities. In recent years, the political nature of public health has been increasingly recognised by researchers, and several multilevel analyses based on European surveys have been published. At the moment, most of the studies concentrate on the impact of welfare state regimes on the health status and health inequities in Europe (see Levecque et al., 2011 for an overview). As far as we know, health inequities in these cross-national comparative analyses have only been studied from the socio-economic or class angle; an exploration of the political influences on the health disparities between migrants and the indigenous population has still to be undertaken. The same holds for explorations of the impact of other societal features than the type of welfare state regime, such as the health care system, labour market structures and policies, or migration and integration policies. Neither has the impact of the sub and supra-national level context been studied. In any case, as some researchers have already pointed out, the comparative approach raises the more fundamental question of whether the nation-state is the most useful and mean-

Using existing health information systems for migrant health research in Europe

ingful unit of analysis (Favell, 2001; Livingstone, 2003). A focus on migrant groups suggests the importance of exploring flows and networks rather than constructing imaginary communities that are geographically bounded and stable. To sum up, when opting for a cross-national comparative perspective, the complexity, uncertainty and potential contradictions that researchers have to face increase significantly, but this kind of approach offers some major advantages over singlecountry studies. These advantages are at the moment however not fully exploited: recent reviews of cross-national comparative research have commonly concluded that the understanding gained is often disappointing given the resources invested (Favell, 2001; Livingstone, 2003). The analyses often turn out to be rather superficial, being restricted to independent country descriptions rather than integrated insights. The field of cross-national comparative research definitely needs to engage in more critical conceptual and methodological reflection, turning the complexity and contradictions into something beneficial instead of problematic. Getting insights into cross-national variation in the conceptualisation and registration of migrant status can thus open a window on the social construction and social reproduction processes in the field of migrant health. 5. Conclusion and recommendations From the perspectives of both migrant integration (Ingleby et al., 2005) and human rights (WHO, 2003), migrant health deserves an important place in national health policy. Although nobody disputes that a sound knowledge base is essential to policy development, there is a serious shortage of relevant data in many EU countries (see Chapters 1 and 2). Before embarking on new studies of migrant populations however, it is important to assess what knowledge can already be distilled from existing health information systems. In this chapter we reviewed the challenges and opportunities of existing administrative registers and (inter)national surveys for the use of research on migrant health. We pointed out that concepts, methods and the knowledge they generate concerning migrant health are socially and historically embedded. Moreover was demonstrated that although existing health information systems have many limitations, these ‘ready-to-use’ data-sets can often serve as a privileged starting point for research. One very important limitation however, is that these sources of information seldom make it possible to consider both the migrant and socioeconomic status of an individual. Such information is crucial when disentangling the role of migration and related factors from the socioeconomic determinants of health and health care use. The opportunities of existing health information systems for cross-national comparative research on migrant health are fewer than for national studies. This is not only

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due to a lack of data on migrant status, but also due to the huge variability in the definitions used and the thoroughness of registration. Researchers need to specify very precisely whom they are including as a migrant in their study. To harmonise definitions, there could be a significant role for the EU to play in facilitating the development and transfer of evidence and information that can be used for migrant health policy. The UN recommendations on defining and measuring ‘international migration’ (UN, 2001) can provide a useful starting-point. Development of guidelines for comparative studies, including analytical strategies which allow for the simultaneous analysis of socioeconomic factors, as well as the implementation of comparable criteria for registry data across countries could be other objectives. In addition, the huge methodological challenges associated with comparative migrant health research in Europe call for increased funding and intensive collaboration at the European level between research centres. Such collaboration could, for example, not only include a focus on the methodological barriers to the inclusion of migrants in national and European (health) surveys, but also consider developing a set of relevant questions (a minimum basic data-set) to be used in migrant health research. Ignoring migrant status because information is hard to acquire, or to consider it simply as an epidemiological confounder, is to obstruct the collection of evidence and the development of policy in this important area of health disparities. Efforts should be directed at understanding both the nature and causes of migrants’ state of health and use of health services, and at developing appropriate evidencebased policies and public health interventions to tackle this source of inequity. References Aspinall, P. (2007). Approaches to developing an improved cross-national understanding of concepts and terms relating to ethnicity and race. International Sociology, 22, 41-70. Bhopal, R. (2004). Glossary of terms relating to ethnicity and race: for reflection and debate. Journal of Epidemiology and Community Health, 58, 441-445. Bhopal, R. (2009). Chronic diseases in Europe’s migrant and ethnic minorities: challenges, solutions and a vision. European Journal of Public Health, 19, 2, 140-143. Bhopal, R., Rafnsson, S.B., Agyemang. C. et al. (2011) Mortality from circulatory diseases by specific country of birth across six European countries: test of concept. European Journal of Public Health (May 20 2011, Epub ahead of print). http://eurpub. oxfordjournals.org/content/early/2011/05/19/eurpub.ckr062.abstract Bos, V., Kunst, A.E., Keij-Deerenberg, I.M., Mackenbach, J.M. (2002). Mortality amongst immigrants in the Netherlands. European Journal of Public Health, 12, S41. Declos, C.E., Benavides, F.G., Garcia, A.M., Lopez-Jacob, M.J. & Ronda, E. (2011), From questionnaire to database: field work experience in the Immigration, work and health survey (ITSALproject). Gaceta Sanitaria, 25(5), 419-422.

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Favell, A. (2001). Integration policy and integration research in Europe: a review and critique. IN: Aleinikoff, T.A. & Klusmeyer, D. (Eds.) Citizenship today: global perspectives and practices (pp. 349-399). Washington DC: Brookings Institute. Fischbacher, C.M., Bhopal, R., Povey, C. et al. (2007). Record linked retrospective cohort study of 4.6 million people exploring ethnic variations in disease: myocardial infarction in South Asians. BMC Public Health, 7, 142. Hedlund, E., Pehrsson, K., Lange, A. & Hammar, N. (2008). Country of birth and survival after a first myocardial infarction in Stockholm, Sweden. European Journal of Epidemiology, 23, 341–347. Hippisley-Cox, J., Coupland, C., Vinogradova, Y. et al. (2008). Predicting cardiovascular risk in England and Wales: prospective derivation and validation of QRISK2. British Medical Journal, 336, 1475–1482. Khlat, M. & Darmon, N. (2003). Is there a Mediterranean migrants mortality paradox in Europe? International Journal of Epidemiology, 32, 1115-1118. Levecque, K., Van Rossem, R., De Boyser, K., Van de Velde, S. & Bracke, P. (2011). Economic hardship and depression across the life course. The impact of welfare state regimes. Journal of Health and Social Behavior, 52, 262-276. Livingstone, S. (2003). On the challenges of cross-national comparative media research. European Journal of Communication, 18, 477-500. INED – Institut National d’Etudes Démographiques (2007). ‘Ethnic’ statistics and data protection in the Council of Europe countries. Study Report, Strasbourg: Council of Europe. Ingleby, D., Chimienti, M., Hatziprokopiou, P., Ormond, M. & De Freitas, C. (2005). In: Fonseca, L. & Malheiros, J. (Eds.) Social integration and mobility: education, housing and health. IMISCOE Cluster B5 State of the art report, Estudos para o Planeamento Regional e Urbano n°67 (pp. 89-119). Lisbon: Centro de Estudos Geograficos. Lorant, V., Van Oyen, H., Thomas, I. (2008). Contextual factors and immigrants’ health status: double jeopardy. Health and Place, 14(4), 678-92. MEHO (2009). Atlas of available information on ethnicity or migrant status in health data sources in the EU countries. MEHO (European Migrant and Ethnic Health Observatory.) http://www.meho.eu.com/Upload/9WP4-annexdeliverable4.2Atlasrev.pdf Mladovsky, P. (2007). Migration and health in the EU. Research note, Brussels: European Commission, Directorate-General Employment, Social Affairs and Equal Opportunities, Unit E1-Social and Demographic Analysis. Nielsen, S., Krasnik, A. & Rosano, A. (2009). Registry data for cross-country comparisons of migrant’s healthcare utilization in the EU: a survey study of availability and content. BMC Health Services Research, 9, 210 (doi 10.1.1186/1472-6963-9-210). Nørredam, M., Kastrup, M. & Helweg-Larsen, K. (2011). Register-based studies on migration, ethnicity and health. Scandinavian Journal of Public Health, 39, S7, 201205. OECD (2003). Glossary of statistical terms: immigrant population, Paris: OECD Publishing. http://stats.oecd.org/glossary/detail.asp?ID=1284

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Salway, S.M., Higginbottom, G., Reime, B., Bharj, K.K., Chowbey, P., Foster, C., Friedrich, J., Gerrish, K., Mumta, Z. & O’Brien, B. (2011). Contributions and challenges of cross-national comparative research in migration, ethnicity and health: insights from a preliminary study of maternal health in Germany, Canada and the UK. BMC Public Health, 11, 514. Schenker, M.B. (2010). A global perspective of migration and occupational health. American Journal of Industrial Medicine, 53, 329-337.    UN (2001). Principles and Recommendations for a Vital Statistics System, Revision 2, New York: United Nations. http://unstats.un.org/unsd/demographic/standmeth/ principles/default.htm WHO (2003). International migration, health and human rights. Health & Human Rights Publication Series Issue No 4, Geneva: World Health Organization.

Ethnicity and socioeconomic status as determinants of health

Chapter 4

Ethnicity and socioeconomic status as determinants of health

Vincent Lorant & Marie Dauvrin

1. Introduction Promoting diversity in the workplace has become a duty of private companies and public organisations alike. Indeed, many companies look for public recognition by enhancing their image as a firm hiring and employing multi-ethnic employees or workers, and treating them alike. Few of us will really believe in such image-promoting strategies. The reality, as seen in most metropolitan areas, looks much more like ethnic matching: there are many Pakistani shopkeepers in Edinburgh, Ecuadorian cleaning ladies in Madrid, and Congolese priests in Brussels. This chapter summarises what we know about the contribution of socioeconomic status (SES) to ethnic inequalities in health, and the impact this contribution has on health inequalities. In the next section, we provide an empirical overview of the contribution of SES to ethnic health inequalities across Europe. The concept of ‘double jeopardy’ encapsulates the idea that many ethnic minority groups have a poorer health status than the majority population, because of their lower SES at both individual and contextual levels. Yet because description is not explanation, the following section puts forward a framework to explain why SES and ethnicity are tied together and how this affects health: in this section we introduce the concept of ‘durable inequality’ (Lorant & Bhopal, 2011b). We follow this with a case study: promoting ‘cultural competence’ has been a popular approach, both in the United States and in Europe, to tackle ethnic inequalities. We assess whether such an approach is consistent with ‘double jeopardy’. We conclude with recommendations on research to better integrate SES and ethnicity in future research on health.

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2. Background Several Western countries have enacted anti-discrimination laws to fight discrimination in the labour, housing, educational, or health care sectors (Pager and Shepherd, 2008). Yet it increasingly turns out that these legal instruments are not sufficient to prevent discrimination. Experimental research on labour-market discrimination in the US has shown that black applicants were half as likely as equally qualified whites to receive a call-back or job offer (Pager and Shepherd, 2008). Pager’s experimental study concluded bluntly that “Black and Latino applicants with clean backgrounds fared no better than white applicants just released from prison” (Pager et al., 2009). We might expect that health care would be different. After all, health care is widely recognised as a universal right. Most Western societies provide health care coverage for the whole population; medical ethics is an important topic in the training of doctors. In practice, however, the picture is not that positive. The landmark study of Schulman, for example, showed (using an experimental design) that both Black patients and women were less likely to get cardiac catheterization than White and male patients respectively, other things being equal (Schulman et al., 1999). Discrimination is thus still a relevant topic in health and needs to be investigated by those working on ethnic health inequalities. However, evidence of discrimination is not evidence of its explanation. The question of how ethnicity becomes a marker of discrimination remains to be explained if it is to be tackled. In this respect, it seems that researchers working on two important streams of health inequalities – socioeconomic inequalities and ethnic ones – remain detached from each other. Ethnicity and SES have long been recognised as two important sources of health inequality. Yet the ways in which these two factors interact with and magnify health inequalities have been somewhat resistant to academic research. Some landmark studies on social inequalities in health have not recognised the role of ethnicity (Mackenbach & Bakker, 2002; Siegrist & Marmot, 2006). The recent Eurothine project, for example, had little to say on ethnic inequalities in health (Department of Public Health University of Rotterdam, 2009). Similarly, the WHO Commission on Social Determinants of Health, led by Marmot, has been criticised for paying little attention to ethnic group inequalities (Salway et al., 2010). This is odd, as ethnicity has long been recognised as a social status category that is strongly linked to many indicators of deprivation (Krieger, 1999; Krieger, 2005; Williams, 1997). 3. Ethnicity, socioeconomic status and health: a bird’s eye view Four important observations can be made about the relation between SES and ethnicity. Firstly, most ethnic minority groups in Europe have a lower SES than non-ethnic minority groups. For example, a Belgian study (Lorant et al., 2008) showed that on

Ethnicity and socioeconomic status as determinants of health

all SES dimensions, ethnic minority groups such as Turks and Moroccans performed worse: they were more likely to be unemployed, to have a lower level of education, to live in rented accommodation and to have fewer housing assets. Moreover, such individual-level disadvantage was combined with contextual-level disadvantage: they were more likely to reside in neighbourhoods with a higher unemployment rate, more environmental nuisance and poorer social capital. This is evidence that an assessment of SES for ethnic minority patients should be multidimensional. Let us take the example of education. Because of laws making secondary education compulsory, it is likely that an increasing proportion of ethnic minority groups will obtain secondary education degrees. Yet detailed data show that Turkish and Moroccans high-school students are more likely to be recruited into the vocational track compared with non-ethnic minority groups. Measuring educational level is not enough: segmentation across educational tracks is also relevant, because as the European Commission has acknowledged, tracking and ability grouping can have particularly negative impacts on migrant and ethnic minority children (EC, 2008). The same applies to employment. For example, in Scotland half of the Bangladeshi workforce is active in the catering and restaurant sector. This has enormous implications for that community: reduced labour opportunities, reduced diversity of social interactions (fewer ‘weak ties’), homogeneous exposure to labour risk factors, and reduced social mobility. Secondly, what is the contribution of such reduced SES to health inequalities? In most cases, when SES is controlled for ethnic health inequalities in self-rated health tend to decrease (Nielsen & Krasnik, 2010), in some case to disappear (Chandola, 2001; Nazroo, 2003), or even to be reversed (Lorant et al., 2008). In the Netherlands, Denmark and Sweden, ethnic inequalities in subjective health persist after controlling for SES (Devillé et al., 2006; Dinesen et al., 2011; Lindstrom et al., 2001; Wiking et al., 2004). The latter two cases are telling, particularly given the outstanding efficacy of the Nordic welfare system in reducing poverty. However, there are many different ways in which SES may affect ethnic inequalities in health. Although SES is mostly considered to be an individual attribute, measured through education, occupation or income, it is also determined by local resources that individuals get access to because of the place where they live. Studies in Europe (Lorant et al., 2008) or in the US (LaVeist et al., 2011) show that this double jeopardy – deprivation at the individual level and in the living place – contributes to ethnic inequalities in health. In the case the Baltimore study, the authors concluded that “the racial disparity we normally see in national samples was attenuated or completely erased when white and black Americans live under similar conditions” (LaVeist et al., 2011). A third observation is that the contribution of SES to ethnic disparities in health varies between groups. In Sweden, the risk of poor health among Polish migrants

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was unaffected by their lower SES, unlike that of Arabic-speakers or Iranians (Lindstrom et al., 2001; Wiking et al., 2004). Similar results are observed in the US, with Hispanics having better health status than Whites. This suggests that the rewarding effect of having a higher SES is not benefiting all ethnic minority groups in the same way. Fourth, different countries may display different magnitudes of ethnic inequalities. Although comparing ethnic inequalities across countries may be risky, because immigrant or ethnic groups in different countries often differ from each other, it is informative regarding the role of ethnicity. Comparing Scotland with Belgium we found that most ethnic groups in Scotland had better subjective health than White Scottish, with the exception of Pakistanis and other South Asians (Lorant and Bhopal, 2011a). In Belgium, most minority ethnic groups had poorer subjective health than members of the majority ethnic group. The same pattern applied to long-term limiting illness: ethnic Chinese, Indians, and Blacks living in Scotland had a lower risk of long-term limiting illness than White Scottish, while Pakistanis had a higher risk. In Belgium, Turkish, Moroccan, and other North African ethnic groups had a higher risk of long-term limiting illness than the Belgian ethnic majority. However, when comparing the ethnic minority group most at risk in Scotland (Pakistanis) with group most at risk in Belgium (Turks), we find that these two groups face similar health disadvantages. This observation supports the need to analyse public policies affecting equal opportunities across ethnic groups, as suggested in the US context (Blank et al., 2004). 4. Durable inequality Discrimination has long been the main mechanism called upon to explain the role of socioeconomic factors in ethnic inequalities in health (Annandale, 1998; Blank et al., 2004; Krieger, 1999; Williams, 1997). Explicit and implicit racism towards ethnic minority groups has a detrimental effect on health, particularly for mental health and health behaviour (Williams et al., 2003). Experimental studies have shown that, all else being equal, referrals were more rare for African-American patients compared with White patients (McGuire et al., 2008; Schulman et al., 1999). Social psychology has explained the occurrence of discriminatory beliefs by intrapsychic factors such as racial animosity, social dominance or group closure (Pager and Shepherd, 2008). However, the way discriminatory beliefs contribute to discrimination in practice is not clear: experimental studies show that people do not rebuff overt acts of racism in the way they anticipate they would, implying that beliefs do not seem to be the main driver of discrimination (Kawakami et al., 2009). Sociology might offer a valuable complementary insight: according to Charles Tilly’s Durable Inequality Theory (DIT), inequality is not so much the result of

Ethnicity and socioeconomic status as determinants of health

discrimination as of organizations introducing categorical inequality in order to facilitate the functioning of the organisation (Tilly, 1998). According to this theory, People who create or sustain categorical inequality by means of the four basic mechanisms (exploitation, opportunity hoarding, emulation and adaptation – see below) rarely set out to manufacture inequality as such. Instead, they solve other organizational problems by establishing categorically unequal access to valued outcomes.1

Essentially, inequality emerges as an artefact of particular strategies of organizations aiming to secure and enhance access to resources (Wright, 2000). Because ethnic inequalities always run the risk of being contested, they may become more durable if ethnic inequalities are matched with socioeconomic inequalities: income inequalities across occupational strata will be more accepted if theses occupational strata correspond to ethnic divisions. Such matching will lower the cost of enforcing inequalities and will make them more stable: the wage gap between manager and employee will be more easily enforced if it matches another categorical division such as white/non-white. Ethnic inequalities and socioeconomic inequalities are thus co-constructed because they facilitate the installation and maintenance of inequalities. The implications of this idea for public health research are important. Ethnic differences in beliefs play little part in the creation of ethnic health inequality, and beliefs will change as a consequence of shifting forms of exploitation (Tilly, 2000). Information about access to and availability of health and health care is also highly dependent on social ties. Recent research shows that successful searches for information involve more professional ties than family ties and that these professional ties play a greater role in distant search than in close search (Dodds et al., 2003). This would help to shed light on the link between the concentration of some ethnic groups in specific occupational or educational niches, a mechanism known within DIT as opportunity hoarding, and the lack of circulation of important health and health care information, as evidenced by ethnic inequalities in cancer mortality (Onega et al., 2010). As acknowledged by Tilly himself, differences in health behaviours or access to health-enhancing resources should be related to difference in early categorizing and organisational exposure such as educational or job segregation (Tilly, 2000).

1 Tilly, 1998:11.

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5. Cultural competence, diabetes and socioeconomic status ‘Cultural competence’ has been proposed as a possible strategy for tackling ethnic health inequalities, and is increasingly popular among public health researchers and policy makers. However, although the relationship between SES and ethnicity has been widely documented, it is still unclear how culturally competent interventions relate to the SES of the patients. We conducted a systematic literature review to identify culturally competent interventions for ethnic minority patients with type 2 Diabetes mellitus (T2DM). We aimed to assess how SES is considered when designing and implementing culturally competent interventions with ethnic minority groups suffering from T2DM. To this end we reviewed the literature published in French and English between 2005 and 2010. We identified the indicators of SES, how they were collected and defined, and whether there were considered in the analysis. We also examined how the studies considered the relationship between ethnic health inequalities and socioeconomic factors. We scored each study to assess their degree of integration of the SES factor. After reviewing 1762 papers, we finally identified 34 studies fitting our inclusion criteria. Most of the studies (28) were carried out in the US. Most papers (16) were published in journals related to health education and training – 7 in the domain of medicine, 4 in public health journals, 3 in ethnicity and disease journals and 2 in nursing sciences journals. Concerning the cultural competence component, 20 interventions integrated cultural norms and health beliefs of the ethnic group targeted. Sixteen interventions were delivered by a health professional speaking the same language as the patients while 15 interventions were delivered by providers belonging to the same ethnic group as the patients. Nineteen studies had a theoretical hypothesis concerning the role of SES in explaining the high prevalence of the T2DM among ethnic minorities. Among these studies, ten reported poor income and low education as factors influencing T2DM outcomes. Living conditions (poor housing or poor healthy food availability) were highlighted in 5 of the 19 studies. Eleven studies did not collect any data on socioeconomic characteristic of the participants, 9 studies collected only one SES factor, twelve studies had two indicators, and two studies had three indicators (income, education and employment status). The most frequent SES indicator was education (n=23), followed by income or wealth (n=12) and occupational status (n=7). The measurement of SES was not detailed. Half of the studies used a cut-off point approach when collecting the SES of the participants (n=19). Beside the SES indicators, 15 studies collected data on the marital status of the participants. We also collected data on how the studies reported the ethnicity of the patients. Although ethnicity has been widely recognised as a multidimensional concept, most of

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the studies (22) collected only one ethnic characteristic. Ethnicity was self-reported in 6 studies. Only one study compared different groups of socioeconomic position (SEP) (Plescia et al., 2008). This study compared interventions aiming at modifying physical activity level, smoking habits and daily consumption of fruits and vegetables between groups of different educational levels. Five studies involved mixed racial groups and compared outcomes between different ethnic groups. Five studies considered the influence of gender in the analysis (n=32). Two studies only concerned women. In general, SES was acknowledged in the theoretical background of the studies but not incorporated in the analysis: SES was generally considered within the theoretical framework of the studies (n=20), but was seldom taken into account in the analysis either as mediator or moderator (n=4). We may question whether these cultural competence interventions lead to a reduction in health inequalities for ethnic minorities suffering from T2DM. The patients in the retrieved studies showed better health outcomes than their counterparts in the control group. There was thus a reduction of inequalities between ethnic minority groups. However, the findings did not demonstrate a reduction of inequalities between groups of different SES. 6. Conclusions and recommendations In neglecting the SES of ethnic minority groups, most interventions – including those based on the notion of cultural competence – may fail in their attempts to reduce health inequalities between ethnic groups: the reason being that it is impossible to disentangle ethnicity from SES, not only from a statistical point of view but also from an analytical point of view. Focusing on ethnic or cultural characteristics may underestimate the impact of socioeconomic factors on health inequalities for ethnic minorities. For interventions to be effective they must take into account gender, ethnicity and SES (Whitehead, 2007). Our findings support an intersectoral approach in health. Public health interventions need to consider both ethnic and socioeconomic factors as long as we cannot disentangle their influences on the health of ethnic minorities. We think that approaches combining both ethnic and socioeconomic factors may be more effective in reducing health inequalities than interventions focusing on only one factor. Neglecting the socioeconomic issues associated with ethnicity may lead to inefficient and irrelevant interventions. We recommend adopting community-based approaches to take into consideration both socioeconomic and ethnic characteristics of the patients. Such approaches should study the role of public policies in creating or reducing socioeconomic and ethnic stratification, such as policies on housing, education, the labour market and discrimination, which play an important role in the creation and (equitable or inequitable) distribution of human capital.

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References Annandale, E. (1998). The sociology of health and medicine : a critical introduction, Malden MA: Polity Press. Blank, R. M., Dabady, M., Citro, C. F., National Research Council (U.S.), & Panel on Methods for Assessing Discrimination (2004). Measuring racial discrimination, Washington DC: National Academies Press. Chandola, T. (2001). Ethnic and class differences in health in relation to British South Asians: using the new National Statistics SocioEconomic Classification. Social Science and Medicine, 52(8), 1285-1296. Department of Public Health University of Rotterdam (2009). Tackling health inequaliites in Europe, an integrated approach : Eurothine final report, Rotterdam: Erasmus Universiteit Rotterdam. Devillé, W., Uiters, E., Westert, G. & Groenewegen, P. (2006). Perceived health and GPs consultation among ethnic minorities compared with the general population in The Netherlands. In: G. Westert, L. Jabaii & F. Schellevis (Eds.) Morbidity, performance and quality in primary care. Oxford: Radcliffe Publishing, 85-96. Dinesen, C., Nielsen, S., Mortensen, L., & Krasnik, A. (2011). Inequality in self-rated health among immigrants, their descendants and ethnic Danes: examining the role of socioeconomic position. International Journal of Public Health, 56(5), 503-514. Dodds, P.S., Muhamad, R., & Watts, D. J. (2003). An experimental study of search in global social networks, Science, 301 (5634), 827-829. EC (2008). Green paper. Migration & mobility: challenges and opportunities for EU education systems. Brussels, European Commission. http://bit.ly/z9RqJn Kawakami, K., Dunn, E., Karmali, F. & Dovidio, J. F. (2009). Mispredicting Affective and Behavioral Responses to Racism. Science, 323 (5911), 276-278. Krieger, N. (1999). Embodying inequality: A review of concepts, measures, and methods for studying health consequences of discrimination. International Journal of Health Services, 29(2), 295-352. Krieger, N. (2005) Stormy weather: Race, gene expression, and the science of health disparities. American Journal of Public Health, 95(12), 2155-2160. LaVeist, T., Pollack, K., Thorpe, R., Fesahazion, R. & Gaskin, D. (2011). Place, Not Race: Disparities Dissipate In Southwest Baltimore When Blacks And Whites Live Under Similar Conditions. Health Affairs, 30(10), 1880-1887. Lindstrom, M., Sundquist, J. & Ostergren, P. O. (2001). Ethnic differences in self reported health in Malmö in southern Sweden. Journal of Epidemiology and Community Health, 55(2), 97-103. Lorant, V. & Bhopal, R.S. (2011a). Comparing policies to tackle ethnic inequalities in health: Belgium 1 Scotland 4. European Journal of Public Health, 21(2), 235-240. Lorant,V. & Bhopal, R. S. (2011b). Ethnicity, socioeconomic status and health research: insights from and implications of Charles Tilly’s theory of Durable Inequality. J. Epidemiol. Community Health, 65, 671-675.

Ethnicity and socioeconomic status as determinants of health

Lorant, V., Van Oyen, H. & Thomas, I. (2008). Contextual factors and immigrants’ health status: Double jeopardy. Health & Place, 14(4), 678-692. Mackenbach, J. P. & Bakker, M. (2002). Reducing inequalities in health : a European perspective, London: Routledge. McGuire, T.G., Ayanian, J. Z., Ford, D. E., Henke, R. E. M., Rost, K. M. & Zaslavsky, A. M. (2008). Testing for statistical discrimination by race/ethnicity in panel data for depression treatment in primary care, Health Services Research, 43(2), 531-551. Nazroo, J. Y. (2003) The structuring of ethnic inequalities in health: Economic position, racial discrimination, and racism. American Journal of Public Health, 93(2), 277-284. Nielsen, S. & Krasnik, A. (2010). Poorer self-perceived health among migrants and ethnic minorities versus the majority population in Europe: a systematic review. International Journal of Public Health, 55(5), 357-371. Onega,T., Duell, E. J., Shi, X., Demidenko, E. & Goodman, D. C. (2010). Race versus place of service in mortality among Medicare beneficiaries with cancer. Cancer, 116(11), 2698-706. Pager, D. & Shepherd, H. (2008). The sociology of discrimination: Racial discrimination in employment, housing, credit, and consumer markets. Annual Review of Sociology, 34, 181-209. Pager, D., Western, B. & Bonikowski, B. (2009). Discrimination in a Low-Wage Labor Market: A Field Experiment. American Sociological Review, 74(5), 777-799. Salway, S., Nazroo, J., Mir, G., Craig, G., Johnson, M. & Gerrish, K. (2010). Fair Society, Healthy Lives: a Missed Opportunity to Address Ethnic Inequalities in Health. BMJ Rapid Response, 12 April 2010. http://www.bmj.com/content/340/bmj.c684/reply Schulman, K.A., Berlin, J. A., Harless, W., Kerner, J. F., Sistrunk, S., Gersh, B. J. et al. (1999). The effect of race and sex on physicians’ recommendations for cardiac catheterization. New England Journal of Medicine, 340(8), 618-626. Siegrist, J. & Marmot, M. G. (2006). Social inequalities in health: new evidence and policy implications. Oxford: Oxford University Press. Tilly, C. (2000). Relational studies of inequality, Contemporary Sociology – A Journal of Reviews, 29(6), 782-785. Tilly, C. 1998, Durable inequality. Berkely: University of California Press. Whitehead, M. (2007). A typology of actions to tackle social inequalities in health. Journal of Epidemiology and Community Health, 61(6), 473-478. Wiking, E., Johansson, S. E. & Sundquist, J. (2004). Ethnicity, acculturation, and self reported health. A population based study among immigrants from Poland, Turkey, and Iran in Sweden. Journal of. Epidemiol Community Health, 58(7), 574-582. Williams, D.R. (1997). Race and health: Basic questions, emerging directions. Annals of Epidemiology, 7(5), 322-333. Williams, D.R., Neighbors, H. W., & Jackson, J. S. (2003). Racial/ethnic discrimination and health: findings from community studies. American Journal of Public Health, 93(2), 200-208.

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Wright, E.O. (2000). Metatheoretical foundations of Charles Tilly’s Durable Inequality. Comparative Studies in Society and History, 42(2), 458-474.

The interplay of health, migrant status and socioeconomic status in eight EU countries

Chapter 5

The interplay of health, migrant status and socioeconomic status in eight EU countries

Ursula Karl-Trummer & Sascha Sardadvar

1. Summary In recent policy decisions and communications, the European Commission (EC) has committed itself to the goal of equity in health. Current debates focus on the influence of socioeconomic status, as well as on particular vulnerable groups such as migrants and ethnic minorities, and on the role of migrant status or ethnicity as important social determinants of health. The interplay of these factors, however, remains unclear. This article addresses the relationship between health, socioeconomic status (SES) and migrant status. We raise the question whether SES alone is sufficient to explain differences in the health of migrants and non-migrants, or whether migrant status must be regarded as a social determinant of health in its own right. We apply a logit regression analysis to data from the European Union Statistics on Income and Living Conditions (EU-SILC), comparing eight EU member states and using self-rated health as dependent variable. The results show that migrant status is associated with a lower chance of good self-rated health in most countries. The EU-SILC dataset was chosen for comparability and richness of data. Eight EU countries – Austria (AT), Belgium (BE), Greece (GR), Ireland (IE), Italy (IT), Spain (ES), Sweden (SE), and the United Kingdom (UK) – were selected for comparative analysis using the following criteria: participation in EU-SILC, number of migrants in the study, and differentiation between EU and third country migrants. Descriptive analysis shows that migrant groups are strongly disadvantaged in terms of SES. Even those with higher levels of education are found more frequently in lower income classes than the non-migrant population in most countries. As expected, the regression analyses show that socioeconomic variables such as educa-

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tion and income influence self-rated health. However, in six of eight countries (AT, BE, ES, GR, SE, UK) it can be shown that migrant status has a significantly negative influence on health status even when SES is controlled for. In some of these six countries, there are considerable variations concerning effects on women versus men as well as on EU versus third country migrants. Identifying the pathways of this observed relationship remains open to future research. This analysis underlines the need for further research on the interplay of various social determinants of health for migrant groups. It also shows that the use of disaggregated data is crucial, as effects are different for different migrant groups and sexes. 2. Introduction Socioeconomic status (SES) as a health determinant has increasingly come under discussion as being socially constructed, therefore reversible, and hence deemed unfair (Wilkinson & Marmot, 2003; Dahlgren & Whitehead, 2007; Kawachi, 2002). The World Health Organization (WHO) as well as the European Commission (EC) has underlined the importance of tackling health inequalities caused by social determinants, the latest review of social determinants of health in Europe (WHO, 2011b; Marmot et al., 2012) gives clear evidence of a social gradient in health between and within European countries. At the same time, the health of migrant populations in the European Union is increasingly getting attention, with migrants (identified as ‘vulnerable groups’) shown to be exposed to some higher health risks and provided for by health care systems that are poorly equipped to give appropriate health care provision (Rechel et al., 2011). There is increasing evidence that certain migrant groups have worse access to health care and worse health status than non-migrant populations (WHO, 2010). In a recent communication, the European Commission (2009:5) identified “equitable distribution of health as part of overall social and economic development” as a priority goal. An important starting-point to reducing health inequalities is seen as improving the data and knowledge base. European-wide surveys such as EU-SILC are referred to as important sources for creating measures of health inequalities to enable comparisons over time and across Europe. The Commission stated that Particular attention needs to be given to the needs of people in poverty, disadvantaged migrant and ethnic minority groups, people with disabilities, elderly people or children living in poverty. For some groups, the issue of health inequality including reduced access to adequate health care, can be qualified as one which involves their fundamental rights.1 1 European Commission, 2009: 8.

The interplay of health, migrant status and socioeconomic status in eight EU countries

In a similar vein, a recent policy briefing by WHO Europe points out that “There is substantial evidence of inequities on both the state of health of these [migrant] groups and the accessibility and quality of health services available to them” (WHO, 2010:v). While recent publications point to migration as an important social determinant of health (Davies et al., 2009), it is interesting to note that the latest declaration on social determinants on health, the Rio Declaration (WHO, 2011a), neither mentions migrant status as being of special importance, nor refers to migrant groups as having particular vulnerability. In fact, the ground-breaking report of the Commission on the Social Determinants of Health (CSDH, 2008) only discussed the problems of internal migrants and ethnic minorities, ignoring the issue of international migration. Possibly this omission is based on the belief that socioeconomic differences fully explain the discrepancies in migrants’ health; whether or not this is true is a question deserving further investigation, as it makes an important difference for the further development of policies and practices to combat inequity in health. In this paper, we investigate whether migrant status as such can be identified as a social determinant of health when controlling for variables that capture SES, and go on to discuss what such findings mean. We open the discussion by reviewing the different discourses on migration and health on one hand, and on equity in health and socioeconomic determinants of health on the other. We argue that these discourses have so far not been adequately linked together, and that this link is needed to create robust evidence for further policy development. After defining the variables included in the analysis, we present results from logit regressions for eight EU countries from the EU-SILC database for 2008, to examine the relationship between self-rated health, migrant status and SES. 3. The debate on health and migration Continued migration in the past has led to a considerable share of the EU’s population being made up of migrants, with 47 million migrants being estimated to reside in the EU as of 2010, of whom 30% are third country migrants (Gijón-Sánchez et al., 2010:17). Nationals of EU Member States enjoy free movement within the EU, which emphasises the benefits of migration within its territory in order to mobilise its existing human resources (see e.g. Fouarge & Ester, 2007). Despite these considerable migration movements, only in recent years has the health of migrants become the object of serious attention (Ingleby, 2009). In 2010, following a series of WHO and EC communications on the issue of health and migration, a WHO policy briefing (WHO, 2010) stressed the importance of shaping health care systems to better meet the needs of migrant populations in Europe. In 2007, the Council of the European Union (2007) emphasised that addressing

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the health needs of migrants is fundamental to achieving the best level of health for everyone living in the EU. In 2008, the Executive Board of the WHO (2008) decided to recommend a resolution on the health of migrants, where health is acknowledged in its role in promoting social inclusion. The resolution calls, among other things, for member states to promote equitable access to health promotion and care for migrants and to formulate and implement strategies for improving the health of migrants. It is also stated that research is needed for additional data on migrants’ health and their access to health care in order to substantiate evidencebased policies. The Council of Europe, which like the WHO European Region encompasses a far greater range of countries than the EU member states alone, has been active since 2001 in drawing attention to the issue of migrant health, issuing a series of non-binding – but nevertheless emphatic and detailed – recommendations for tackling this source of health inequities (CoE, 2001; CoE, 2006; CoE, 2011). Growing scientific interest is also evident from the increasing number of comparative European reports on migrant health and scientific networks such as COST Actions IS0603 (Health and Social Care for Migrants and Ethnic Minorities in Europe – HOME) and IS1103 (Adapting European Health Systems to Diversity – ADAPT). A recent overview of the field published by the WHO European Observatory on Health Systems and Policies (Rechel et al., 2011) has argued that the European knowledge base concerning migrant health is in urgent need of further development. It has often been remarked that generalisations about migrants’ state of health of migrants are hard to make, as findings are affected by many factors such as country of origin, host country, ethnic group, sex, age, type of migration and the time that has elapsed since migration (cf. Ingleby et al., 2005). The Portuguese Presidency Report in 2007 (Padilla and Pereira Miguel, 2009) named as main determinants constitutional factors, individual lifestyles, social and community networks, living and working conditions, and general socioeconomic, cultural and environmental conditions. Discussions centre increasingly on the interplay of these factors and the causal pathways from migrant status to (ill) health. 4. Health inequities and the social gradient Social inequalities in health became a prominent topic of discussion in the 2000s (see e.g. Wilkinson & Marmot, 2003; Marmot, 2005; Mackenbach, 2006; CSDH, 2008; De Looper et al., 2009). The latest report from the WHO Commission on the Social Determinants on Health confirms that a social gradient in health can be observed across Europe and the former USSR, where life expectancy ranges from 61 in Russia to 81 in Iceland for males and 73 in Kazakhstan to 85 in France for females (Marmot et al., 2012). Such inequalities are attributed to inequalities in the conditions of daily life and the fundamental drivers that give rise to them: power,

The interplay of health, migrant status and socioeconomic status in eight EU countries

money and resources (CSDH, 2008). They are deemed to be unfair and hence called inequities (Kawachi et al., 2002). Because they are seen as socially constructed, health inequalities are regarded as potentially reversible by proper policies and action (Dahlgren and Whitehead, 2007). This view was endorsed by the European Parliament Resolution of 8th March 2011, which stated that “Universality, access to high-quality care, equity and solidarity are common values and principles underpinning the health systems in the EU Member states” (European Parliament, 2011). The Rio Declaration on Social Determinants of Health of 21st October 2011 reaffirmed that “health inequities within and between countries are politically, socially and economically unacceptable, as well as unfair and largely avoidable…” Social determinants of health are also considered to be of great relevance to the health of migrants, and reports state that differences in state of health are typically also found between migrants and non-migrants. Nevertheless, an in-depth analysis of such differences is not yet fully integrated into this discussion, as socioeconomic differences (referred to as ‘the gradient’) are assumed to be the main determinants of inequality. Much research simply ignores migrant status. As a result, the health consequences of migration are seldom discussion in research within a ‘social determinants of health’ framework. Recent studies nevertheless stress that migrant status is a factor that should be considered as social determinant of health and that further research on its relation to SES is urgently needed (Lorant et al., 2009; Davies et al., 2009; Lorant & Bhopal, 2011). Statistics show a clear social gradient in health for each country of our study: low income and low education reduce the chance of good health irrespective of migrant status. We raise the question whether SES alone is sufficient to explain differences between the health of migrants and non-migrants, and whether migrant status can be identified as a social determinant of health in its own right. In the next two sections, we explore these relationships by describing our analyses and discussing the results. 5. Data and regression specification Analyses were carried out on cross-sectional data from EU-SILC 2008 (revision 1), the most recent data available to the authors. The EU-SILC data-set is based on a representative sample of private households and provides comparable socioeconomic micro-data on a wide range of variables, at both the personal and household level (see Eurostat (2010) for a detailed description of variables). Data for EU-SILC have been collected in each member state of the European Union (plus Iceland, Norway, Switzerland and Turkey) since 2005 on a yearly basis. Socioeconomic data are available for respondents who are at least 16 years old.

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Our analyses included member states (i) having at least one million inhabitants, where (ii) the sample size includes at least 7,000 observations after controlling for missing values, where (iii) at least five percent of the respective persons are foreignborn, and where (iv) the data makes it possible to distinguish between EU migrants and third country migrants. These criteria were met by Austria, Belgium, Greece, Ireland, Italy, Spain, Sweden and the United Kingdom. We applied a logit regression with self-rated health (‘general health’ in the SILC database) as the dependent variable. This variable serves as a key indicator for health in most empirical studies (e.g. Hurtado et al., 2011) and is broadly acknowledged as a valid and comprehensive indicator for health (Ziebarth, 2010). The data has been dichotomised; a score of one was given if the respondent has answered with either ‘very good’ or ‘good’, and zero if the answer was ‘fair’, ‘bad’ or ‘very bad’. The independent variables include the biological variables AGE, which is metric, and MALE, which equals one if the person is male. Migrant status is defined in three categories depending on the country of birth, where the respective dummy variable (i) NON_MIGR equals one and is taken as the reference group if a person was born within the country where he or she resides, (ii) EU_MIGR equals one if the person was born outside the country of residence but within the EU, and (iii) OTH_MIGR equals one if the person was born in a third country (in all cases borders are taken as of 2008). Education is based on the International Standard Classification of Education (ISCED), where EDU.1 equals one if the highest level attained is lower secondary education or below (ISCED levels 0, 1 and 2), and EDU.3 equals one if the person has completed a tertiary education (ISCED levels 5 and 6). The reference group EDU.2 equals one if the highest level attained is an upper secondary education or a post-secondary non-tertiary education (ISCED levels 3 and 4). The variable INCOME equals the logarithm of disposable income per weighted household member, where the first member’s weight equals one, each further member’s weight aged 14 and over equals 0.5, and each member’s weight aged 13 or less equals 0.3.2 In addition to weighted household income, we consider the number of household members as such, which is the metric variable HH_SIZE. Economic status is split into seven dummy variables, where employees form the largest group in each country. The respective variable EMPLOY equals one if a person works as an employee and is taken as the reference group. The variable SELF equals one if a person is self-employed either with or without employees, UNEMP equals one if a person is unemployed, RETIRED equals one if a person is in retirement or has given up business, SCHOOL equals one if a person is a pupil, a student, in further training or unpaid work experience, HOUSE equals one if a person fulfils domestic tasks and care responsibilities, OTHER if a person is in compulsory mili2 For instance, if a household consists of two adults and two children below 14 and has a yearly disposable income of 21,000 euros, then the respective value equals ln (21,000 / (1 + 0.5 + 0.3 + 0.3)) = 9.21.

The interplay of health, migrant status and socioeconomic status in eight EU countries

tary community or if she works as a family worker, or is economically inactive for other reasons than specified above. The regression model was set up to reveal how the chances of good health are increased or decreased as a function of individual attributes. Variables that capture biological differences and SES are expected to have an influence on health regardless of migrant status. The question is whether, and if so to what extent, migrant status increases or decreases the chances of good health, given other determinants. 6. Results Table 1 shows the descriptive results and Table 2 the results of the regression of each dependent variable on health, shown separately for each of the eight countries. In Table 2 the results are given as the coefficients of the logit regression, positive values indicating an increased chance of good health, and negative values the opposite. It can be seen that relative to non-migrants, the chances of good health are reduced significantly (i) for EU migrants in Belgium, Greece, Spain and Sweden, and (ii) for third country migrants in Austria, Belgium, Greece, Spain, Sweden and the United Kingdom. In each country, educational levels have a highly significant influence on health, which is clearly in line with what is expected from the literature. Also as expected, household income has a positive and highly significant coefficient in each country. Household size has a positive coefficient as well, but the significance levels vary across countries. Economic status relative to employees displays a varying influence across countries for the self-employed, a highly significant and negative influence in each country for the unemployed and retired, and in most countries for the categories HOUSE and OTHER. In addition, high age decreases the chance for good health in all cases, while the influence of male sex on health differs for the various countries. Some studies point out that migration patterns as well as economic circumstances in the host countries may differ for men and women (see, for instance, Anthias & Lazaridis, 2000; OECD, 2007). To test whether an influence on health can be found as well, the analyses were augmented by interaction terms in order to differentiate between female and male migrants. Table 3 displays the results, which reveal how the influence of migrant status on health differs across sexes. Akaike’s Information Criterion (AIC) is lower in Table 3 in the cases of Austria and Greece, which points to the advisability of including interaction terms. The log-likelihood (LIK) values show a similar picture, as the corresponding likelihood ratio tests reject the assumption of no influence of interaction terms for these two countries, whereas in the other six cases the results of Table 2 are preferred.3 For Austria the 3 The likelihood-ratio tests equal 8.246 for Austria and 11.065 for Greece. For all other countries, the value is below 5.991, which corresponds to the 0.95 level of the χ² distribution.

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UK

Sweden

Spain

Italy

Ireland

Greece

Belgium

Austria

Table 1. Descriptive statistics: percentage of respondents in each category, broken down by country and migrant status

EDU.1

EDU.2

EDU.3

INC.1

INC.2

INC.3

INC.4

HEAL

NON_MIGR

20.6

63.4

16.0

22.1

25.0

26.0

27.0

71.0

EU_MIGR

15.6

57.3

27.1

29.4

24.0

23.5

23.1

70.8

OTH_MIGR

44.3

43.6

12.1

50.8

26.0

16.7

6.4

66.5

NON_MIGR

33.6

35.4

31.0

22.5

25.2

26.4

25.9

77.2

EU_MIGR

37.1

33.6

29.3

33.3

24.4

17.7

24.6

72.7

OTH_MIGR

40.3

32.8

26.8

59.8

22.3

9.4

8.4

70.7

NON_MIGR

50.1

32.5

17.4

24.0

24.5

25.3

26.2

73.7

EU_MIGR

25.4

53.5

21.0

28.9

29.4

25.0

16.7

82.5

OTH_MIGR

43.0

42.1

14.9

38.1

31.1

21.3

9.6

83.1

NON_MIGR

48.3

30.3

21.4

25.1

25.0

24.9

25.0

82.4

EU_MIGR

31.8

30.5

37.8

23.8

24.0

25.4

26.7

86.6

OTH_MIGR

14.3

25.6

60.1

23.7

27.6

29.6

19.2

90.6

NON_MIGR

52.2

37.3

10.6

24.2

24.7

25.3

25.7

63.3

EU_MIGR

33.7

57.0

9.3

31.1

29.1

22.5

17.2

76.6

OTH_MIGR

47.4

41.8

10.8

40.1

29.4

18.4

12.0

77.7

NON_MIGR

58.3

19.0

22.6

24.0

25.0

25.1

25.9

71.4

EU_MIGR

38.6

35.3

26.1

31.3

23.6

25.4

19.7

77.4

OTH_MIGR

52.0

28.4

19.6

39.3

25.5

23.2

12.0

79.4

NON_MIGR

22.0

49.6

28.4

23.3

25.1

25.5

26.1

81.8

EU_MIGR

26.9

47.6

25.6

30.7

24.6

22.7

22.0

71.8

OTH_MIGR

23.9

45.7

30.4

44.4

24.1

19.6

11.9

74.1

NON_MIGR

23.6

49.7

26.7

24.7

25.3

25.2

24.8

80.9

EU_MIGR

26.7

41.9

31.5

22.8

22.8

27.2

27.16

82.2

OTH_MIGR

21.4

37.7

40.9

31.6

21.4

20.2

26.8

82.5

Notes: Results are calculated from the samples that were used for the regression analyses, sums over 100 are due to rounding. INC.1 to INC.4 represent the lowest to the highest income quartiles for the complete sample as measured by the variable INCOME, HEAL equals one if either ‘good’ or ‘very good’ health is reported, all other variables are as defined in the text.

The interplay of health, migrant status and socioeconomic status in eight EU countries

Table 2. Logit coefficients for independent variables in eight European countries (dependent variable: Health)

Austria

Belgium

Greece

Ireland

Italy

Intercept

-2.34***

-1.74**

2.33***

1.26*

1.03***

1.40***

AGE

-0.05***

-0.04***

-0.07***

-0.03***

-0.07***

-0.05*** -

0.03***

MALE

-0.16**

0.09°

0.24***

0.12

0.22***

0.31***

0.25***

0.13

-0.24*

-0.619**

-0.11

0.08

-0.25*

-0.25°

0.05

-0.19**

-0.78***

-0.24*

EU_MIGR

Spain

Sweden

UK

-1.21°

0.46 -0.03*** 0.03 0.06

OTH_MIGR

-0.37***

-0.40***

-0.34**

-0.24

EDU.1

-0.53***

-0.33***

-0.42***

-0.54***

-0.45***

-0.46***

-0.32***

-0.39***

EDU.3

0.53***

0.26***

0.31**

0.23*

0.35***

0.28***

0.42***

0.42***

INCOME

0.60***

0.49***

0.35***

0.26***

0.32***

0.28***

0.38***

0.26***

HH_SIZE

0.06**

0.11***

0.04*

0.08**

0.05***

0.02

0.15***

0.12***

SELF

-0.06

0.14

0.14

0.01

0.20***

0.06

0.23

-0.02

UNEMP

-1.01***

-1.00***

-0.83***

-0.56***

-0.37***

-0.58***

-1.00***

-0.65***

RETIRED

-0.48***

-0.25**

-0.57***

-0.60***

-0.09*

-0.35***

-0.20°

-0.44***

SCHOOL

0.60**

0.60***

-0.28

-0.22

-0.05

0.46***

0.32°

0.16

HOUSE

-0.17°

-0.33**

-0.28**

-0.50***

-0.04

-0.28***

-0.16

-0.35**

OTHER

-0.26

-1.38***

-0.32*

-0.64**

-0.30***

-0.69***

0.14

-0.46*

AIC

10,413

10,019

10,546

7,309

41,452

26,410

6,072

11,806

LIK

-5,198

-4,995

-5,258

-3,640

-20,711

-13,190

-3,021

-5,888

n

10,873

11,059

13,838

9,448

42,984

28,940

7,015

13,994

Notes: Calculations have been carried out with R using the AER package 1.1-7. Standard errors are in parentheses, asterisks display probabilities: ***p ≤ 0.001, **p ≤ 0.01, *p ≤ 0.05, °p ≤ 0.1. AIC and LIK refer to the values of the Akaike information criterion and the maximised log-likelihood, respectively. n is the sample size.

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Table 3: Results from Table 2 extended by interaction terms

Austria

Belgium

Greece

Ireland

Italy

Spain

Sweden

Intercept

-2.35***

-1.75**

2.33***

1.27*

1.03***

1.41***

-1.21°

0.46

AGE

-0.05***

-0.04***

-0.07***

-0.03***

-0.07***

-0.05***

-0.03***

-0.03***

MALE

-0.22***

0.31***

0.24***

-0.05

0.09

0.28***

0.10

0.22***

UK

MALE: EU_MIGR

0.25

-0.29*

-1.29***

0.02

-0.06

-0.29°

-0.30

0.33

MALE: OTH_MIGR

-0.13

-0.33*

-0.61***

-0.08

0.08

-0.12

-0.65***

-0.17

FEMALE: EU_MIGR

0.04

-0.21°

-0.23

0.21

0.10

-0.23

-0.21

-0.13

0.02

-0.24**

-0.90***

-0.30*

FEMALE: OTH_MIGR

-0.58***

-0.46**

-0.12

-0.33

EDU.1

-0.54***

-0.33***

-0.42***

-0.54***

-0.45***

-0.46***

-0.32***

-0.40***

EDU.3

0.53***

0.26***

0.31**

0.23*

0.35***

0.28***

0.42***

0.42***

INCOME

0.61***

0.49***

0.35***

0.26***

0.33***

0.28***

0.38***

0.26***

HH_SIZE

0.06**

0.11***

0.04°

0.08**

0.05***

0.02

0.15***

0.12***

SELF

-0.05

0.14

0.12

0.01

0.20***

0.06

0.23

-0.02

UNEMP

-1.01***

-1.0***

-0.85***

-0.56***

-0.37***

-0.58***

-1.01***

-0.65***

RETIRED

-0.46***

-0.24**

-0.60***

-0.60***

-0.09*

-0.35***

-0.20°

-0.43***

SCHOOL

0.59**

0.60***

-0.28

-0.22

-0.05

0.46***

0.32°

0.16

HOUSE

-0.15

-0.33**

-0.29**

-0.51***

-0.04

-0.28***

-0.14

-0.35**

OTHER

-0.25

-1.38***

-0.33*

-0.65**

-0.30***

-0.69***

0.12

-0.46*

AIC

10,409

10,022

10,539

7,312

41,455

26,413

6,076

11,807

LIK

-5,188

-4,994

-5,252

-3,639

-20,710

-13,190

-3,021

-5,887

n

10,873

11,059

13,838

9,448

42,984

28,940

7,015

13,994

Notes: See Table 1.

The interplay of health, migrant status and socioeconomic status in eight EU countries

results show that female third country migrants have a significantly lower chance of good health than other groups. For Greece we find that male immigrants have a lower chance of good or very good health, where in this case EU migrants as well as third country migrants show significant results. Summarising it may be said that the negative and highly significant coefficients for third country migrants in six out of eight countries constitute a remarkably robust result. This is of particular interest if we consider the heterogeneity of the host countries as well as the respective migrant groups. In some countries such as Austria and Belgium, third country migrants are more frequently found in the lowest, and less frequently in the highest educational level classes compared to nonmigrants. In other countries such as Ireland and the UK, a relatively high share of third country migrants falls into the highest education levels (>60% and >40% within the samples, respectively). However, despite the visibility of highly-skilled non-EU migrants in these two countries, the distribution among income classes was still comparable to that among non-migrants. It was also interesting to note that in Italy only 63% of the non-migrants describe themselves as healthy, which is far below the levels in all other countries (70 – 83%) and also far below the levels of both EU migrants (77%) and third country migrants (78%) within Italy. In other words, some crucial variables can be considered as outliers in Ireland and Italy (and to some extent in the United Kingdom), therefore we are tempted to conclude that non-significant coefficients do not mean that migrant status has no influence on health in these countries. 7. Conclusions and discussion The regression analyses show that socioeconomic variables such as education and income have a highly significant positive impact on health. These results are in line with the available evidence concerning SES as social determinant of health. However, we find that migrant status has a highly significant negative impact on health, even when we control for the established social determinants. A significant negative influence of migrant status is found for Austria, Belgium, Greece, Spain, Sweden and the UK. Austria and Greece also display differing results for men and women. This result is remarkably robust for third country migrants, while in Ireland and Italy no statistically significant results are found. For Italy, however, the non-significant coefficients are possibly due to the fact that the non-migrant population declares itself remarkably more frequent as non-healthy than the two migrant groups. The other non-significant coefficients for migrant status do not mean that no interplay between migrant status, SES and health status exists. Firstly, distributions of educational levels and income classes may differ for migrant population relative to non-migrants. Secondly, consider the possibility that migrant status determines

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SES, and SES determines health, i.e. that SES is an intervening variable in the relation between migrant status and health. In that case, the fact that ‘controlling for SES’ reduced the effect size would not mean that migrant status is not an important determinant of health. A variable (in this case, SES) should never be considered as a confounder if it lies on the causal path between two other variables. Our findings are in line with the hypothesis that migrant status has an effect on health which is independent of the effects of SES. The pathway between migrant status and health, however, remains unclear. It may be that SES appears in this path as intervening variable, for example because processes of social exclusion prevent migrants from reaching their full potential. For example, European educational systems may disadvantage migrant pupils and discrimination may prevent migrants from getting jobs which are appropriate for their level of education. Our results provide strong evidence that socioeconomic status has a decisive influence on the health of migrant groups, but they do not provide much insight into the nature of the underlying social processes. They show that it is important to consider the effects of migrant status and SES simultaneously, and that there may between complex interactions between the various determinants of health. Further analysis is needed to gain better knowledge about the drivers of health inequity and their interplay, in order to be able to shape European public health systems and to provide optimal protection of the health of migrant groups. Acknowledgements The authors would like to thank the following for their valuable inputs to this article: David Ingleby, Vincent Lorant, Achim Zeileis and Sonja Novak-Zezula. References Anthias, F. & Lazaridis, G. (Eds.) (2000). Gender and Migration in Southern Europe – Women on the Move. Oxford and New York: Berg. CoE (2001). Health conditions of migrants and refugees in Europe, Strasbourg: Council of Europe. http://bit.ly/x3dPQj CoE (2006). Recommendation Rec2006(18) of the Committee of Ministers to Member States on health services in a multicultural society, Strasbourg: Council of Europe. http://bit.ly/yP7wLd CoE (2011). Recommendation CM/Rec(2011)13 of the Committee of Ministers to member states on mobility, migration and access to health care, Strasbourg: Council of Europe. http://bit.ly/rKs2YD Council of the European Union (2007). Health and migration in the EU, Brussels: Coun-

The interplay of health, migrant status and socioeconomic status in eight EU countries

cil of the European Union, 15609/07. http://bit.ly/yqjbIy CSDH (2008). Closing the gap in a generation: health equity through action on the social determinants of health. Final report of the Commission on Social Determinants of Health, Geneva: WHO. http://bit.ly/xqmJdD Dahlgren, G. & Whitehead, M. (2007). European strategies for tackling social inequities in health: Levelling up Part 2. Studies on Social and Economic Determinants of Population Health, No 3, Copenhagen: WHO Regional Office for Europe. http://bit. ly/x4MmiL Davies, A.A., Basten, A. & Frattini, C. (2009). Migration: a social determinant of the health of migrants. Background paper, Brussels: International Organization for Migration. http://bit.ly/Ag6vqx De Looper, M. and Lafortune, G. (2009). Measuring disparities in health status and in access and use of health care in OECD countries. OECD Health Working Papers, 43, Paris: OECD Publishing. http://bit.ly/zWgr7y European Commission (2009). Solidarity in health: reducing health inequalities in the EU. Commission of the European Communities, COM(2009) 567. Brussels: European Commission. http://bit.ly/yFK9Bw European Parliament (2011): European Parliament resolution of 8 March 2011 on reducing health inequalities in the EU (2010/2089(INI)) Strasbourg: European Parliament. http://bit.ly/xa9S0w Eurostat (2010). European Union Statistics on Income and Living Conditions (EU-SILC). Brussels: Eurostat. http://bit.ly/wBMiph Fouarge, D. & Ester, P. (2007) Factors determining international and regional migration in Europe, Dublin: European Foundation for the Improvement of Living and Working Conditions. http://bit.ly/zrpjNg Gijón-Sánchez, M.-T., Pinzón-Pulido, S., Kolehmainen-Aitken, R.-L., Weekers, J., López Acuña, D., Benedict, R. and Peiro, M.-J. (2010). Better health for all in Europe: developing a migrant sensitive health workforce. Background paper, Brussels: International Organization for Migration. http://bit.ly/xWkv4k Hurtado, D., Kawachi, I. and Sudarsky, J. (2011). Social capital and self-rated health in Colombia: the good, the bad and the ugly. Social Science & Medicine, 72, 584590. Ingleby, D., Chimienti, M., Hatziprokopiou, P., Ormond, M., and de Freitas, C. (2005). The role of health in integration. In M.L. Fonseca and J. Malheiros (Eds.) Social integration and mobility: education, housing and health – IMISCOE cluster B5 state of the art report (pp. 88-119), Lisbon: Centro de Estudos Geográficos Ingleby, D., (2009) European Research on Migration and Health, Background paper, Brussels: International Organization for Migration. http://bit.ly/Al2mld Kawachi, I., Subramanian, S.V. and Almeida-Filho, N. (2002). A glossary for health inequalities. Journal of Epidemiology and Community Health, 56, 647-652. Lorant, V., Van Oyen, H. & Thomas, I. (2008). Contextual factors and immigrants’ health status: Double jeopardy. Health & Place, 14(4), 678-692.

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Lorant, V. & Bhopal, R. S. (2011). Ethnicity, socioeconomic status and health research: insights from and implications of Charles Tilly’s theory of Durable Inequality. Journal of. Epidemiology and Community Health, 65, 671-675. Mackenbach, J.P. (2006). Health inequalities: Europe in profile. An independent, expert report commissioned by the UK Presidency of the EU, Brussels: European Commission. http://bit.ly/xcHDFP Marmot, M. (2005). Social determinants of health inequalities. The Lancet, 365, 10991104. Marmot, M., Allen, J., Bell, R. & Goldblatt, P. (2012). Building of the global movement for health equity: from Santiago to Rio and beyond. The Lancet, 379 (9811), 181-188. OECD (2007). International migration outlook – SOPEMI report 2007. Paris: OECD Publishing. OECD (2010). International migration outlook – SOPEMI report 2010. Paris: OECD Publishing. Padilla, B. and Pereira Miguel, J.P. (2009). Health and migration in the European Union: building a shared vision for action. In A. Fernandes and J.P. Miguel (Eds.) Health and migration in the European Union: better health for all in an inclusive society (pp. 15-22). London: Pro-Book Publishing Limited. http://www.pro-brook.com/images/PDFs/Portugal%20EU%20health.pdf Rechel, B., Mladovsky, P., Devillé,W., Rijks, B., Petrova-Benedict, R. & McKee, M. (2011). Migration and Health in the European Union, European Observatory on Health Systems and Policies Series, Maidenhead: Open University Press, McGraw Hill. WHO (2008). Health of Migrants. Resolution WHA61/2008/REC/1 at the Sixty-first World Health Assembly, Geneva: WHO. http://bit.ly/wfjnAC WHO (2010). How health systems can address health inequities linked to migration and ethnicity, Copenhagen: WHO Regional Office for Europe. http://bit.ly/rKs2YD WHO (2011a): Rio Political Declaration on Social Determinants of Health, Geneva: WHO. http://bit.ly/ADwVbe WHO (2011b). Interim second report on social determinants of health and the health divide in the WHO European Region, Copenhagen: WHO Regional Office for Europe. http://bit.ly/yT0gFo Wilkinson, R. & Marmot, M. (Eds.) (2003). Social determinants of health: the solid facts (second editions), Copenhagen: WHO Regional Office for Europe. http://bit.ly/yzj4mp Ziebarth, N. (2010). Measurement of health, health inequality, and reporting heterogeneity. Social Science & Medicine, 71, 116-124.

The interplay of health, migrant status and socioeconomic status in eight EU countries

PART 2

RESEARCH ON SPECIFIC GROUPS AND HEALTH PROBLEMS

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The well-being of unaccompanied refugee minors

Chapter 6

The well-being of unaccompanied refugee minors

Ilse Derluyn & Marianne Vervliet

1. Introduction This chapter aims to open a window into the world of unaccompanied refugee minors and will examine the threats to their mental health and psychological well-being. In the following two sections the legal perspective on these children will be contrasted with a broader psychological-pedagogical view, in which we emphasise the many stresses and hardships that confront them. In Section 4, the mental health problems to which they are vulnerable are illustrated by a brief report of two studies carried out in Belgium, showing differences between accompanied and unaccompanied refugee minors. Section 5 balances this ‘problematising’ approach with some observations about the strength and resilience of these children. We conclude with some recommendations for future research on these groups and interventions to support them. Concerning the definitions used in this chapter, two comments are in order. Firstly, in keeping with internationally agreed definitions we use the terms ‘minors’ and ‘children’ interchangeably to refer to persons under the age of 18. However, when talking about older children we will sometimes refer to them as ‘young people’ or ‘adolescents’. Secondly, under the generic label ‘refugees’ we also include asylum seekers, distinguishing the latter group where necessary in the text. In Section 3.1 we argue that many unaccompanied minors who do not seek asylum should also be regarded as refugees, since the circumstances of their migration justify using the term ‘forced migrants’. 2. The legal perspective In 2010, unaccompanied minors – persons under the age of 18 not under the care of a parent or legal guardian – lodged about 15,500 asylum applications in 69

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countries worldwide, constituting about 4% of the total number of asylum claims in those countries (UNHCR, 2010). This group forms about 15% of all minors seeking asylum: according to Eurostat, “out of the 71,350 asylum applicants in the EU-27 who were minors in 2010, some 10,700 (excluding the Czech Republic) were unaccompanied”. Unaccompanied minors applying for asylum also form only a small part – certainly in Belgium – of all unaccompanied migrant children; that group also includes those not applying for asylum, undocumented or irregular migrants and other ‘children on the move’ (Derluyn & Broekaert, 2008). The Belgian figures on unaccompanied minors shown in Figure 1 illustrate this. Figure 1. Unaccompanied minor migrants in Belgium

Sources: Guardianship Office, Federal Agency for the Reception of Asylum-Seekers (Fedasil), Office of the Commissioner-General for Refugees and Stateless Persons 4500 4000 3500 3000 all reports of unaccompanied minors

2500 2000

reports of ‘new’unaccompanied minors

1500

unaccompanied minors applying for asylum

1000 500 0 2006

2007

2008

2009

2010

2011 jan april

The increasing trend shown here in the numbers of unaccompanied minor asylum seekers since 2006 is found in several European countries, although the increase has not everywhere been a steady one. Also, total numbers of unaccompanied minor refugees have not got back to anything like the record level which they reached in 2001, which was followed by a sharp drop. About three-quarters of unaccompanied minor asylum seekers are boys; most (about 70%) are between 15 and 18 years old (though recently there seems to be an increase in the number of younger children). They originate from countries all over the world, but in the last few years a high proportion of them have come from Afghanistan (EMN, 2010).

The well-being of unaccompanied refugee minors

International declarations, with the Child Rights Convention in the forefront, clearly state that unaccompanied minor migrants are in need of special protection. Even if not applying for asylum, they must be granted (temporary) residence status; states are obliged to provide them with adequate reception and care. In practice, governments try to define who is an unaccompanied refugee migrant as precisely as possible, by defining inclusion and exclusion criteria and taking steps to ensure the criteria are met. These criteria are defined around three central concepts: ‘being a refugee’, ‘being unaccompanied’ and ‘being a minor’. – Although the definition of ‘being a refugee’ is laid down in the 1951 Geneva Refugee Convention, different rules apply in practice according to the asylum seeker’s country of origin. In the European Union context, ‘being a refugee’ usually entails ‘originating from a country outside the EU’, since in most European countries unaccompanied minors originating from the EU are not granted the same protection status as those coming from ‘third countries’. – Being ‘unaccompanied’ can be interpreted very strictly, referring to minors not accompanied by their biological/legal parent(s) or legal guardian, or more broadly, including any minor not accompanied by their legal or previous caregiver. – Being ‘a minor’ is interpreted everywhere as ‘being under 18 years of age’. Although this seems to be a simple criterion, in reality it means that governments apply a wide range of methods in order to determine the age of those claiming to be under age. Methods vary from physical examinations (e.g. X-rays of teeth, collarbone or wrist) to psychosocial screening measures or a combination of both (EMN, 2010). These age assessment methods give rise to much political, scientific and public debate, in which consensus is far from being reached (Crawley, 2007; Hjern et al., 2012). One might conclude from this apparatus of definitions and criteria that we are dealing with a fairly homogeneous group. However, nothing could be further from the truth, not only in regard to socio-demographic characteristics (age, country of origin, gender etc.), but also considering their highly diverse backgrounds, migration motives, expectations, developmental and individual characteristics and needs. This heterogeneity will be further explored in the next section, illustrating a ‘psychological-pedagogical’ perspective on unaccompanied refugee and migrant youth.

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3. A broader view Starting from the three same concepts that are used to define this group in immigration policies – being a refugee, unaccompanied, and a minor – this section will present another view of children, focusing on what their situation means for them rather than for the legal system. 3.1 Refugee Firstly, in our view virtually all unaccompanied minors can in a sense be regarded as ‘refugees’: not in the strict meaning of the Geneva Convention, but as persons who to a certain extent have been forced (whether by circumstances or by other people) to leave their home country. Reasons for leaving vary widely, from political violence, war, family problems, forced marriage and human trafficking to economic and environmental reasons (Thomas, 2003). For unaccompanied minors, the decision to leave is usually not taken by themselves (or not solely by themselves), rendering the migration to some extent unexpected (Kohli, 2006). Administratively, of course, it matters a great deal whether or not a minor migrant applies for asylum – but this decision is often not made until after leaving home, and it too may not represent an entirely free choice. Just as one can step (or be pushed) into the asylum procedure, so some minors will step out of it – or be coerced into doing so by the traffickers who arranged their journey. Secondly, for all these children migration entails many losses: they have to say goodbye to friends, family members, material things, cultural values and habits, a social position and role in society, clear future perspectives, etcetera. This means that unaccompanied minor migrants – like all migrants – go through a certain period of ‘mourning’, during which they need to find a way to deal with the many losses they have suffered (Craswell et al., 2011; Goodman, 2004). Thirdly, during the migration process unaccompanied minors are often exposed to a range of difficult experiences. These potentially traumatising events can already start in the home country, with experiences related to war, displacement, violence and persecution (Rousseau & Drapeau, 2004). But the difficulties do not stop after leaving home: during the journey to the host country many experience extreme hardship, being exposed to difficult living conditions, dependency on human smugglers and traffickers, detention and imprisonment, high levels of uncertainty and insecurity, and so on (Derluyn & Broekaert, 2005). This is particularly the case for the many migrants who have to travel for weeks or even months, such as the unaccompanied minors coming from Eastern Europe or Asia and crossing many countries before they reach their destination (Bolland, 2010; Mogue, 2010), or those departing from African countries who are obliged to take huge risks at sea – many of whom die on this journey to the ‘promised land’. Moreover, the confrontation with potentially traumatising events does not stop when the final destination is reached. Consider having to live in large-scale asylum centres with frequently reported incidents of aggression, physical and even sexual

The well-being of unaccompanied refugee minors

abuse (Lay & Papadopoulos, 2009), without privacy and often in overcrowded living spaces; the potentially re-traumatising interviews during the asylum procedure; or confrontations with discriminatory and racist acts in the host society (Kirmayer et al., 2010). All this may reinforce the damage done by earlier traumatising experiences (Craswell et al., 2011; Hodes, 2008). Considering all the above factors, we have to conclude that the separation from parents or familiar caretakers puts unaccompanied minors at high risk of exposure to a cumulative range of potentially traumatising experiences (Derluyn et al., 2009), with serious potential impact on their mental health and psychosocial well-being. A fourth set of problems for unaccompanied refugee minors – again, shared by most migrants – concerns the task of finding their way in a completely new society. They need to learn a whole range of new things, such as a new language, cultural habits, how the educational system works, traffic regulations – the list is endless. Moreover, they also must find a position and an identity in this new society and try to build a social network. This acculturation process (Berry, 2010) also has to take account of the particular demands of the new society, demands which in today’s European context are often more directed towards ‘assimilation’ than towards the – psychologically speaking – healthier strategy of ‘integration’ (Berry, 2010). Acculturation is made even more problematic by the often total uncertainty about whether or not a minor migrant will be able to stay (on a legal basis) in the new country. Governments confront asylum seekers with contradictory demands: on the one hand they are expected to integrate (or even assimilate) as far as language and culture is concerned, on the other hand they are prevented from integrating through work and social contacts. They do not know in which future they can invest emotionally. According to Vitus (2010), this uncertainty is especially hard for unaccompanied minors to cope with. 3.2 Minor Besides being a refugee, unaccompanied minors are children who need to develop, i.e. to deal with a range of developmental tasks such as learning to build friendships and partner relationships, developing sexuality, making choices in regard to education and work, and so on. These tasks are particularly challenging because they have to be confronted in a strange and unfamiliar environment, far from familiar guides and anchor figures. As well as these general developmental considerations, research has also identified some individual characteristics that can impact on children’s mental health, such as gender, age, personality and genetic make-up (see e.g. Lustig et al., 2004). 3.3 Alone The over-arching experience of being ‘unaccompanied’ and thus separated from one’s parents or usual caretakers makes the experiences we have described above

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especially difficult to cope with. Dealing with the losses, the traumatising experiences, the choices to be made, is much more difficult for minors when they have to do it without the support, advice and affection of their parents, and cut off from the wider network of relationships they have grown up in. Social support is generally considered to be a very important protective factor when dealing with challenges, reducing the detrimental effect of stress on health and well-being (Mels et al., 2008). Many unaccompanied minors are sent away with a certain ‘task’ – with expectations imposed by parents, family members or others, such as sending money back home, obtaining a diploma or a high-skilled job, or taking care of a younger relative. However, very soon after arrival in the destination country, minors realise that fulfilling these expectations will be extremely hard: making money is not as easy as it was made out to be, gaining a diploma may be an unreachable goal – indeed making much progress with any project will be psychologically very difficult, as long as they do not know if they will be allowed to stay in the country after their eighteenth birthday (Wallin, 2005). Unaccompanied minors feel the weight of these expectations particularly strongly because of the strong loyalty many have towards their parents. This loyalty is frequently very strong to begin with, and can become even stronger when the children become separated from their parents and are deprived of opportunities to demonstrate loyalty (Boszormenyi-Nagy & Krasner, 1987). Moreover, many arrive with a ‘constructed’ story, meaning that parts of the story are created in a way that is expected to increase the chances of obtaining a residence permit (Kohli, 2006). For many children breaking with this story is unthinkable, because they have been urged by parents, family members or smugglers not to tell the truth: they may indeed remain convinced that this story will give them the best chances. However, keeping up the story through thick and thin can create enormous stress. As relationships of trust with social workers, teachers, foster parents and their guardian grow, the tension between maintaining these deceptions and satisfying the need for belonging and openness becomes steadily greater. 4. Mental health As the following chapter by Anders Hjern shows, much research has already been carried out on the mental health of child refugees and asylum seekers; much of it has concerned separated children (see e.g., Fazel et al., 2011; Huemer, 2011; Lustig et al., 2004). Nevertheless, the evidence on this group remains rather scarce, particularly in the light of the theoretical reasons for expecting them to be at increased risk of developing psychological problems. In this section we will examine two studies on the mental health of unaccompanied refugee minors (both those who

The well-being of unaccompanied refugee minors

have applied for asylum and those who have not), comparing them with minors arriving in Belgium together with one or both parents or another caretaker. 4.1 Two Belgian studies on refugee minors’ mental health These two studies used the same study setting and design, but were carried out in different periods: one in 2002 (see also: Derluyn & Broekaert, 2007; Derluyn et al., 2008; Derluyn et al., 2009) and the other in 2008. Both studies were conducted in language classes for newly arrived, 11- to 18-year-old, non-Dutch speaking children in the Flemish region of Belgium. In these classes, children whose proficiency in Dutch is too inadequate for them to be able to profit from regular schooling can take language courses for an entire school year. From all schools organising these classes (about 40), 34 were randomly selected to participate in 2002, and 21 schools participated in the study in 2008. After explaining the nature of the study to the participants, their written informed consent was obtained and they completed (anonymously) three self-report questionnaires under the supervision of two or more research assistants, educated to master’s level, during a 60-90 minute classroom period. Questionnaires were translated into 19 different languages; as far as possible, the children were given questionnaires in their own mother tongue or in another familiar language. In 2002, 1,294 children agreed to fill in the questionnaires (one child refused to participate); in 2008, 926 participated, although in both studies not all participants completed all items. In further analyses, participants born in Western countries were excluded (n = 45 in 2002; n = 92 in 2008), as were those over 21 years of age (n = 3 in 2002, none in 2008). In 2002, 10% of the total group were unaccompanied refugee migrants; in 2008, 6.4% of the sample were classified in this group. Socio-demographic characteristics of the 2002 and 2008 samples, and significant differences between them (measured with Χ² and t-tests) are shown in Table 1. In 2002, the main countries of origin were Morocco (n=179), Ghana (n=135) and Turkey (n=118), while in 2008 this had shifted to Bulgaria (n=79), Morocco (n=77) and Turkey (n=71). These changes were also due to the participation of different schools in different regions in both studies. For the unaccompanied minors, the main countries of origin were in 2002 Angola (n=16), Albania (n=8) and Afghanistan (n=7), and in the second study Afghanistan (n=30), Iraq (n=5) and Angola (n=3). 4.2 Measures As measures, we used four self-report questionnaires: firstly, demographic and social characteristics (gender, age, country of origin and living situation) were measured using a series of closed questions. Secondly, the Hopkins Symptom Checklist-37 for Adolescents (HSCL-37A) (Bean et al., 2007a) was administered.

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Table 1. Socio-demographic characteristics of the sample Total group n = 2172

2002 study n = 1246

2008 study n = 926

Male

1151 (54.3%)

658 (54.0%)

493 (54.7%)

Female

970 (45.7%)

561 (46.0%)

409 (45.3%)

15.31 (1.80)

15.43 (1.79)

15.15 (1.81)

Gender

Age (mean; SD)

0.096

Continent of origin Africa

778 (36.5%)

508 (41.0%)

270 (30.2%)

804 (37.7%)

433 (34.9%)

371 (41.5%)

Eastern Europe

442 (20.7%)

240 (19.4%)

202 (22.6%)

South America

108 (5.1%)

58 (4.7%)

50 (5.6%)

501 (32.8%)

367 (41.9%)

134 (20.6%)

Between two and 30 days

758 (49.6%)

377 (43.1%)

381 (58.4%)

Between one month and one year

169 (11.1%)

78 (8.9%)

91 (14.0%)

99 (6.5%)

53 (6.1%)

46 (7.1%)

660 (34.0%)

443 (40.2%)

217 (25.9%)

Duration of journey

More then one year

78.996***

Time living in Belgium 0 – 6 months

49.026***

6 – 12 months

753 (38.8%)

407 (37.0%)

346 (41.2%)

More than 1 year

527 (24.3%)

251 (22.8%)

276 (32.9%)

1102 (51.3%)

649 (52.6%)

453 (49.5%)

Accompanied or not? With both parents

21.649****

With father only

213 (9.9%)

125 (10.1%)

88 (9.6%)

With mother only

512 (23.8%)

274 (22.2%)

238 (26.0%)

Alone

183 (8.5%)

124 (10.0%)

59 (6.4%)

With somebody else

139 (6.5%)

62 (5.0%)

77 (8.4%)

In a house with one or more family members

1751 (81.7%)

983 (79.9%)

768 (84.2%)

In an asylum centre

Where do you live now?

29.530*** 277 (12.9%)

178 (14.5%)

99 (10.9%)

In another residential institution for youth

34 (1.6%)

10 (0.8%)

24 (2.6%)

Alone

24 (1.1%)

19 (1.5%)

5 (0.5%)

Foster family care

25 (1.2%)

15 (1.2%)

10 (1.1%)

Other living environment

32 (1.5%)

26 (2.1%)

6 (0.7%)

1441 (67.4%)

930 (76.2%)

511 (55.8%)

With whom did you live in your home country? With both parents Only with my father Only with my mother

3.59*** 25.980***

Asia

Same day

Χ² or t

149.948*** 86 (4.0%)

19 (1.6%)

67 (2.3%)

307 (14.1%)

107 (8.8%)

200 (21.8%)

Alone

46 (2.2%)

28 (2.3%)

18 (2.0%)

Other family member

178 (8.3%)

83 (6.8%)

95 (10.4%)

Other person

79 (3.7%)

54 (4.4%)

25 (2.7%)

The well-being of unaccompanied refugee minors

This self-report questionnaire is an adaptation of the Hopkins Symptom Checklist-25 (HSCL-25) (Derogatis et al., 1974), a self-report screening tool to diagnose elevated symptoms of anxiety (ten items) and depression (fifteen items), for use with refugee adolescents: item questions were simplified, shortened, translated and back-translated into nineteen languages. In addition, a subscale of twelve items investigating certain externalising symptoms (substance use and aggressive behaviour) was added to the original questionnaire. All items had to be answered on a Likert scale, ranging from 1 (little) to 4 (very much). The psychometric quality of the HSCL-37A for use in populations of refugee adolescents was found to be good (Bean et al., 2006, 2007a, 2007b; Derluyn & Broekaert, 2007; Derluyn et al., 2008, 2009). Thirdly, to investigate the traumatic events the adolescents experienced, the Stressful Life Events (SLE) (Bean et al., 2006) was used. Participants are directed to indicate whether or not they experienced twelve different types of potentially traumatising events, such as war, natural disaster, separation from family and physical or sexual abuse. The SLE has been translated and back-translated into nineteen languages. Lastly, the Reactions of Adolescents to Traumatic Stress (RATS) (Bean et al., 2006), a self-report questionnaire investigating the prevalence of post-traumatic stress symptoms, was administered. The twenty-two item scale, parallel to the DSM-IV criteria for post-traumatic stress disorder (PTSD), can be divided into three subscales: intrusion (six items), avoidance (nine items) and hyper-arousal (seven items). Participants are directed to answer the items according to the events endorsed on the SLE, scoring the items on a Likert scale ranging from 1 (not at all) to 4 (always). The questionnaire has been translated and back-translated into nineteen languages. The psychometric quality of the RATS for use in populations of refugee adolescents was found to be good (Bean et al., 2006, 2007b; Derluyn & Broekaert, 2007; Derluyn et al., 2008, 2009). 4.3 Stressors and mental health problems Unaccompanied refugee minors report a high prevalence of both potentially traumatising experiences and mental health problems. Overall, it is clear that those who are separated from their parents are at increased risk of experiencing traumatising events, as indicated by the odds ratios in Table 2, and that they are also at higher risk of developing serious problems of anxiety, depression and posttraumatic stress disorder, compared to minors arriving with one or both parents or with someone else (Figures 2-4). Next to separation from parents, the number of traumatic experiences (in itself also related to separation from parents) and gender are important risk factors: girls and those who have experienced many traumatising events are much more likely to show a higher prevalence of mental health problems (Derluyn et al., 2009).

103

64.7

Experienced a stressful life event where (s)he thought that someone else was in danger

2.89 (2.34)

28.8

23.8

5.8

38.1

21.1

22.9

20.1

17.2

14.8

51.2

12.2

34.7

Both parents n = 1101

3.12 (2.39)

34.3

19.8

8.4

39.0

28.9

18.2

19.8

17.7

14.1

53.0

14.4

40.9

Father n =213

3.42 (2.60)

34.8

31.2

7.4

45.7

24.7

22.4

21.6

16.3

16.0

57.1

18.2

47.6

Mother n = 512

4.24 (2.51)

41.7

40.3

10.2

47.7

33.8

43.7

14.9

14.6

24.2

59.8

36.2

52.7

Other n = 139

3.510

3.924

7.688

2.939

3.139

6.830

5.948

3.261

2.077

2.979

2.842

9.773

3.360

OR*

Figures show percentage of children answering ‘yes’ to each item; *OR: Odds Ratio ‘yes’, reference group versus accompanied minors (both parents, mother, father, other); all odds ratios significant at < 0.001 level.

6.66 (2.63)

73.4

Experienced a stressful life event where (s)he thought ‘I’m in danger’

Mean (SD)

68.4 17.6

Saw that someone else was physically mistreated

Experienced sexual abuse

64.9 68.0

Experienced a war or armed conflict in his home country

45.0

Experienced a disaster

Was physically mistreated

35.7 29.6

Had a life threatening medical problem

Experienced a serious accident

64.4 76.6

Was separated from his family against his will

Experienced the death of a loved one

69.0

Alone n = 183

Experienced important changes in family life during last year

Traumatic experiences

Table 2. Traumatic experiences as indicated on the Stressful Life Events (SLE)

104 Ilse Derluyn & Marianne Vervliet

The well-being of unaccompanied refugee minors

Figure 2. Refugee minors showing serious or very serious problems of anxiety (HSCL-37A) 100 80 60 40 20 0 alone

both parents

father

mother

2002

58.1

13.6

24.1

15.9

20

2008

69.1

12

21.7

17.2

37.5

other

Figure 3: Refugee minors showing serious or very serious problems of depression (HSCL-37A) 100 80 60 40 20 0 alone

both parents

father

mother

other

2002

46.8

15

15.5

18

23.3

2008

53.1

14.6

24.1

14.3

24.6

Figure 4. Refugee minors showing serious or very serious problems of posttraumatic stress disorder (RATS) 100 80 60 40 20 0 alone

both parents

father

mother

other

2002

45

20.9

23.5

17.6

33.3

2008

43.6

11.1

12

14.5

19.7

105

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Ilse Derluyn & Marianne Vervliet

5. Agency & resilience However, focusing exclusively on mental health problems would lead to the erroneous conclusion that all unaccompanied refugee minors are ‘problem children’. Although their vulnerability to psychological problems should not be overlooked, they mainly need to be seen and approached as ‘normal children in abnormal situations’. This means, firstly, that these children are not inherently vulnerable to developing mental health problems, but that the situations they are in, now and in the past, are likely to evoke this vulnerability. Secondly, this view entails that the care and support for these children should not only focus on their problems, but – in contrast – should emphasise their strengths and competencies. Above all, supporting these youths should primarily aim at strengthening them and their social network in finding ways to get on with their lives and to deal with the huge challenges they are confronted with. In research on this group it is essential to focus not only on mental health issues, but also on the ways in which patterns of agency and resilience develop in these children, and how they can be supported in further developing these strengths (Chase, 2010; Rhaghallaigh, 2010). 6. Conclusion Separation from parents is clearly associated with poorer mental health in child migrants, particularly if other aggravating factors are involved. The studies described here show how unaccompanied minor migrants have an increased risk of developing mental health problems such as anxiety, depression and posttraumatic stress symptoms (cf. also Fazel, 2011; Macksoud & Aber, 1996; Sourander, 1998). One factor influencing this high prevalence of mental health problems in unaccompanied minors is the higher number of traumatic events they are confronted with, indicating that separation from parents can place children at greater risk of being confronted by potentially traumatising situations (Guarnaccia & Lopez, 1998). Furthermore, it seems likely that the high levels of mental health problems in unaccompanied refugee children is due to the interplay between traumatic experiences, lack of parental and social support, and multiple losses (McKelvey & Webb, 1998). However, other possible factors, such as the uncertain future perspective and the living situation in (mainly) asylum centres must also be taken into account, as shown in other studies (Carswell et al., 2011; Chase, 2010; Vitus, 2010). Although unaccompanied refugee minors are clearly at risk for impaired mental health, this does not mean that they only should be viewed and approached from the perspective of ‘vulnerability’. Despite the huge challenges they are confronted with and the hardships and suffering many endure, most of them still show a remarkable resilience and agency and a range of strengths and competencies. Care for these children and research examining them should try to find an appropri-

The well-being of unaccompanied refugee minors

ate balance between these two approaches. Ideally, the two perspectives should be integrated in a single framework, which views these young people in their context – past, present and future – using a holistic approach (Broekaert et al., 2004). All of us studying and/or supporting these groups need to realise that such an approach leads to many conclusions that are difficult to reconcile with current immigration policies – a realisation that confronts us with serious ethical and political dilemmas (Derluyn & Broekaert, 2008). References Bean, T., Derluyn, I., Eurelings-Bontekoe, E., Broekaert, E. & Spinhoven, P. (2006). Validation of the multiple language versions of the Reaction of Adolescents to Traumatic Stress questionnaire. Journal of Traumatic Stress, 19, 241-255. Bean, T., Derluyn, I., Eurelings-Bontekoe, E., Broekaert, E. & Spinhoven, P. (2007a). Validation of the multiple language versions of the Hopkins Symptom Checklist-37 for refugee adolescents. Adolescence, 42, 51-71. Bean, T., Derluyn, I., Eurelings-Bontekoe, E., Broekaert, E. & Spinhoven, P. (2007b). Comparing psychological distress, traumatic stress reactions and experiences of unaccompanied refugee minors with experiences of adolescents accompanied by parents, Journal of Nervous and Mental Disease, 195, 288-297. Berry, J.W. (2001). A psychology of immigration. Journal of Social Issues, 57, 615-631. Bolland, K. (2010). Children on the move between Afghanistan and Western countries, New York: UNICEF. Boszormenyi-Nagy, I. & Krasner, B. (1987). Between give and take: a clinical guide to contextual therapy, New York: Brunner Mazel. Broekaert, E., Van Hove, G., Bayliss, P. & D’Oosterlinck, F. (2004). The search for an integrated paradigm of care models for people with handicaps, disabilities and behavioural disorders at the Department of Orthopedagogy of Ghent University. Education and Training in Developmental Disabilities, 39, 206-216. Chase, E. (2010). Agency and Silence: Young People Seeking Asylum Alone in the UK. British Journal of Social Work, 40, 2050-2068. Craswell, K., Blackburn, P. & Barker, C. (2011). The Relationship Between Trauma, Post-Migrations Problems and the Psychological Well-being of Refugees and Asylum Seekers. International Journal of Social Psychiatry, 57(2), 107-119. Crawley, H. (2007). When is a Child not a Child? Asylum, Age Disputes and the Process of Age Assessment, London: ILPA. Derluyn, I. & Broekaert, E. (2005). On the way to a better future: Belgium as transit country for trafficking and smuggling of unaccompanied minors. International Migration, 43, 31-56. Derluyn, I. & Broekaert, E. (2007). Different perspectives on emotional and behavioural problems in unaccompanied refugee minors. Ethnicity & Health, 12, 141-162.

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Derluyn, I. & Broekaert, E. (2008). Unaccompanied refugee children and adolescent: the glaring contrast between a legal and a psychological perspective. International Journal of Law & Psychiatry, 31, 319-330. Derluyn, I., Broekaert, E. & Schuyten, G. (2008). Emotional and behavioural problems in migrant adolescents in Belgium. European Child & Adolescent Psychiatry, 17, 5462. Derluyn, I., Mels, C. & Broekaert, E. (2009). Mental health problems in separated refugee adolescents. Journal of Adolescent Health, 44, 291-297. Derogatis, L.R., Lipman, R.S., Rickels, K. et al. (1974). The Hopkins Symptom Checklist (HSCL): A self-report symptom inventory. Behavioral Science, 19, 1-15. EMN (2010). Policies on Reception, Return and Integration arrangements for, and numbers of, Unaccompanied Minors – an EU comparative study, Brussels: European Migration Network. EMN (2011). Key EU migratory statistics. Brussels: European Migration Network. Fazel, M., Ruth, R.V., Panter-Brick, C. & Stein, A. (2011). Mental health of displaced and refugee children resettled in high-income countries: risk and protective factors. Lancet. Early Online Publication, 10 August 2011, doi:10.1016/S0140-6736(11)600500. Goodman, J.H. (2004). Coping with trauma and hardship among unaccompanied refugee youths from Sudan. Qualitative Health Research, 14, 1177-1196. Guarnaccia, P.J. & Lopez, S. (1998). The mental health and adjustment of immigrant and refugee children. Child & Adolescent Psychiatric Clinics, 7, 537-553. Hjern, A., Brendler-Lindqvist, M. & Norredam, M. (2012). Age assessment of young asylum seekers. Acta Paediatrica, 101, 4-7. Hodes, M., Jagdev, D., Chandra, N. & Cunniff, A. (2008). Risk and resilience for psychological distress amongst unaccompanied asylum seeking adolescents. Journal of Child Psychology and Psychiatry, 49, 723-732. Huemer, J., Karnik, N., Voelkl-Kernstock, S., Granditsch, E., Dervic, K., Friedrich, M. & Steiner, H. (2009). Mental health issues in unaccompanied refugee minors. Child and Adolescent Psychiatry and Mental Health, 3, 13. Kirmayer, L.J., Narasiah, L., Munoz, M., Rashid, M., Ryder, A.G., Guzder, J., Hassan, G., Rousseau, C., Pottie, K. & CCIRH (2011). Common mental health problems in immigrants and refugees: general approach in primary care. Canadian Medical Association Journal, 183, E959-E967. Kohli, R.K.S. (2006). The sound of silence: Listening to what unaccompanied asylumseeking children say and do not say. British Journal of Social Work, 36, 707-721. Lay, M. & Papadopoulos, I. (2009). Sexual maltreatment of unaccompanied asylumseeking minors from the Horn of Africa: A mixed method study focusing on vulnerability and prevention. Child Abuse & Neglect, 33, 728-738. Lustig, S.L., Kia-Keating, M., Knight, W.G. et al. (2004). Review of child and adolescent refugee mental health. Journal of the American Academy of Child & Adolescent Psychiatry, 43, 24-36.

The well-being of unaccompanied refugee minors

Macksoud, M. & Aber J. (1996). The war experiences and psychosocial development of children in Lebanon. Child Development, 67, 70-88. McKelvey, R.S. & Webb, J.A. (1995). Unaccompanied status as a risk factor in Vietnamese Amerasians. Social Science & Medicine, 41, 261-266. Mels, C., Derluyn, I. & Broekaert, E. (2008). Social support in unaccompanied asylum seeking boys: a case study. Child: Care, Health and Development, 34(6), 757-762. Mogue, C. (2010). Trees only move in wind. A study on unaccompanied Afghan children in Europe. UNHCR. Ni Raghallaigh, M. & Gilligan, R. (2010). Active survival in the lives of unaccompanied minors: coping strategies, resilience, and the relevance of religion. Child & Family Social Work, 15, 226-237. Rousseau, C. & Drapeau, A. (2004). Premigration exposure to political violence among independent immigrants and its associations with emotional distress. Journal of Nervous & Mental Disease, 192, 852-856. Sourander A. (1998). Behavior problems and traumatic events of unaccompanied refugee minors. Child Abuse & Neglect, 22, 719-727. Thomas, S., Nafees, B. & Bhugra, D. (2004). “I was running away from death” – the pre-flight experiences of unaccompanied asylum seeking children in the UK. Child: Care, Health and Development, 30, 113-122. UNHCR (2011). UNHCR Global Trends 2010. Geneva: UNHCR. Vitus, K. (2010). WAITING TIME. The de-subjectification of children in Danish asylum centres. Childhood- a Global Journal of Child Research, 17, 26-42. Wallin, A.M.M. & Ahlstrom, G.I. (2005). Unaccompanied young adult refugees in Sweden, experiences of their life situation and well-being: A qualitative follow-up study. Ethnicity & Health, 10, 129-144.

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Chapter 7

Psychiatric morbidity in former refugee children 12-20 years after settlement in Sweden: a national cohort study

Anders Hjern

1. Summary Up to now, the scientific literature dealing with the mental health of refugee children has primarily been guided by a psychological discourse focusing on traumatic stress and risk factors in the family. In this study we investigated the long-term psychiatric morbidity of former refugee children as young adults, with a focus on socioeconomic risk factors in exile. The study was carried out on a national cohort born 1968-83 and Swedish residents in 2001, consisting of 3,431 former refugee children from Chile, 6,008 residents born in Iran who had settled in Sweden at the age of 2-16 during 1984-1989, 3,116 Swedish-born offspring of parents born in Latin America and 1.2 million Swedish residents with two Swedish-born parents. These study groups were followed up in hospital admission data during 2002-2005. Cox regression analyses were used to analyse the three outcome variables in relation to person time in the study with stepwise adjustment for socioeconomic variables. The results showed that former refugee children from Iran and Chile had higher hazard ratios for hospital admissions because of psychotic disorders, self-inflicted injuries and illicit drug abuse compared with the Swedish comparison group, with hazard ratios ranging from 1.6 to 2.7. The Swedish-born comparison group with a Latin American background had hazard ratios similar to those of the former refugee children for illicit drug abuse and psychotic disorders, but a lower hazard ratio for self-harm. When the analysis was adjusted for the two economic indicators and geographic residence, hazard ratios between the different study groups were

Psychiatric morbidity in former refugee children 12-20 years after settlement in Sweden

equalised for self-harm and illicit drug abuse, and for psychotic disorders much attenuated. From these results we conclude that the socioeconomic context of exile has an important influence on the development of severe psychiatric problems of refugee children in the long term. Theories that can unite a long-term social inequality perspective with a short-term psychological perspective of stress are needed to understand the development of psychiatric morbidity in former refugee children in young adulthood. 2. Introduction During the last decades, millions of refugees from low- and middle-income countries have settled in high-income countries in northern Europe. About a third of them have been children, settling with their families or arriving unaccompanied. These children have often been exposed to massive stress in relation to political violence in their country of origin, a long journey filled with obstacles before reaching the country of resettlement, and a long period of uncertainty and very restricted economic resources before their asylum application is approved. Considering these harsh circumstances, it is not surprising that studies of mental health in newly settled children in refugee families often demonstrate high rates of distress and psychiatric symptoms. Several Scandinavian researchers investigated the mental health of children in recently arrived asylum-seeking families from Latin America and the Middle East in the latter part of the 1980’s and the early 1990’s. It was consistently reported that as many as 40-50% of the children had a significant burden of psychiatric and psychosomatic symptoms in these studies (Almquist & Brandell, 1997; Ekblad, 1993; Hjern, Angel & Jeppsson, 1998; Montgomery, 1998). The long-term mental health situation of refugee children has less often been addressed in research (Fazel et al., 2011). Sack et al. (1993, 1999) followed 46 Cambodian refugee children in the US up to 12 years after settlement. 40 of these children had survived gruelling exposure to stress in concentration camps at 8 to 12 years of age in the country of origin. Most of the children fulfilled the criteria of PTSD and/or depression in their late teens but these symptoms decreased over time, the most profound reduction being observed between the three and six year followups. Despite relatively high symptom levels, there was no indication of impairment of education or work. A prospective study of refugee children from Chile and the Middle East who settled in Stockholm between 1986 and 1987 studied the relation between mental health and traumatising events in the home country. Two-thirds of the children had personally experienced political violence during war and/or persecution in the home country; these children had considerably higher rates of fears, anxiety, sleep

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disturbances and being easily startled during the first 18 months in Sweden (Hjern, Angel & Jeppsson, 1998). When these children were followed up six to seven years after resettlement, however, these symptoms had become rare. Instead, the most worrying signs among the refugee children in this follow-up were high rates of depressed mood and loneliness (Hjern & Angel, 2000). Montgomery (2010 and 2011) followed up 131 young refugees who settled in Denmark in 1992-93 as children, 8 to 9 years after settlement. A high prevalence of psychological problems at arrival was considerably reduced by the time of followup, but was still somewhat higher than the levels found in most community studies using the same assessment tools. Stress in the country of origin before settlement was an important predictor of distress in the short term, but this influence had been greatly attenuated by the time of the 8-9 year follow-up. Aspects of social life in Denmark, including reported discrimination, were more important predictors of psychological problems in the structural equation model at follow-up, then the pre-flight risk factors. In 1994 Angel et al. (2001) described the mental health situation of 99 schoolaged refugee children from Bosnia 12-24 months after resettlement in Växjö, Sweden. The general level of poor mental health reported was surprisingly low; no more than 11% were described as having poor mental health, despite fairly high levels of sleeping disturbances, separation anxiety and depressed mood. Children from the area of Prijedor in northern Bosnia, who had experienced very severe ‘ethnic cleansing’ which often included experiences from the concentration camps of Omarska and Trnoplje, were more often reported to be in distress with symptoms of PTSD as well as depression and anxiety. Four years later, eleven of the Prijedor children were interviewed again and compared with age- and sex-matched controls from the rest of the study population of Bosnian refugee children. Most of the children from Prijedor (eight) still had symptoms of re-experience and/or avoidance of memories of these events, but only one reported hyper-arousal. Apart from the specific PTSD symptoms, however, these children showed few signs of child psychiatric disturbances, neither in their own reports nor in the reports of their parents. In the first study in 1994 the children from Prijedor had significantly higher scores of poor mental health than the ‘controls’, but these differences had disappeared in the follow-up interviews in the parental reports as well as in self-reported symptoms. These studies – supported by many others – demonstrate that certain symptoms related to the PTSD concept are common among refugee children during the first years in exile (Fazel et al., 2011). The fading of these symptoms over time suggests that most children have the capacity to recover from these symptoms without professional help. Specific symptoms related to distressful memories may remain, but rarely seem to interfere with the activities of daily life. In the study reported here we exploited the unique potential of the Swedish national registers for long term follow-up of Swedish residents in social and health

Psychiatric morbidity in former refugee children 12-20 years after settlement in Sweden

databases. We investigated psychiatric morbidity 12-20 years after settlement in Sweden in the two largest populations of refugee children who settled in Sweden during the 1980’s; the Iranians and Chileans. In our study they were compared with the general population and with Swedish-born offspring of Latin American parents. To estimate the role of socioeconomic factors in exile we introduced socioeconomic indicators into our analysis in a stepwise manner. 3. Methods All Swedish residents have a unique Personal Identification Number (PIN) assigned at birth or immigration, which they keep until death or emigration. National registers contain data on demographic and socioeconomic variables for all documented residents in Sweden. This study was based on data from the Register of the Total Swedish Population (RTP), the Multi-Generation Register (MGR), the Total Enumeration Income Surveys for 2000 and 2005 and the Patient Discharge Register. The data on each individual from these registers was linked through the PIN. 3.1 Study population Our sample was based on the population of Swedish residents born between 19681983 in the RTP on December 31, 2001. Based on information of country of birth and the year in which a residence permit was issued, we identified 3,431 residents born in Chile and 6,008 residents born in Iran who fulfilled the criteria of having settled in Sweden between the ages of 2 and 16 during 1984-1989. Information from RTP and MGM was used to select one comparison population of 3,116 Swedish-born offspring of parents born in Latin America, and another comparison group consisting of all 1.6 million Swedish residents with two Swedish-born parents in these birth cohorts. Since very few immigrants from Iran and Chile were allowed residence in Sweden during these years for other reasons than being granted asylum, it seemed reasonable to consider these two study groups as population of refugees. 3.2 Socio-demographic variables Socio-demographic indicators were created by linkage to the following data-bases: 1. RTP: year of birth, age at immigration (i.e. when the residence permit was issued), sex, and geographical location of the home/residence (large city, other city, rural). 2. The Total Enumeration Income Survey for 2001: social welfare benefits received in 2001 by the head of the household of the biological mother (yes/ no). disposable income, this variable includes all incomes in a household,

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deducted by taxes and is computed to be comparable between families of different sizes. This variable was divided into quintiles for each birth cohort of the entire Swedish population born 1968-83 based on their reported income during 2001. 3.3 Outcome variables Three outcome variables were created by linkage to the National Hospital Discharge Register from January 2002 to December 2005; hospital admission because of self-harm, a psychotic disorder and/or illicit drug abuse. The three concepts were defined according to the tenth revision of the World Health Organization (WHO) International Classification of Diseases (ICD-10). ICD´s definition of self-harm includes purposely self-inflicted poisoning or injury, and attempted suicide. Psychotic disorders included schizophrenia, schizotypal and delusional disorders (F20-F29). Illicit drug abuse included mental and behavourial disorders due to psychoactive substance use (F10-F19) as well as physical complications of use of psychoactive substances. 3.4 Statistical analysis We used Cox regression to calculate hazard ratios (HR) of time to the first hospital admission that fulfilled the criteria of the outcome variables defined above. Year of birth was considered as a continuous variable in the regression models, in view of the linear relation of age in relation to all three outcomes. Other socio-demographic variables were entered as dichotomised variables into the models, when necessary with the use of dummy variables. The SPSS software package, version 18.0, was used in all statistical analyses. 4. Results The mean age at the beginning of the follow-up period in 2002-2005 was 22-23 years in the group of former refugee children from Chile and Iran, 22 years in the Swedish-born comparison group with Latin American heritage, and almost 27 in the Swedish comparison group (Table 1). The economic situation of the former refugee children was considerably more adverse than that of the Swedish comparison group, and slightly more adverse compared with the Swedish-born offspring of Latin Americans (Table 1). Table 2 presents the multivariate analysis. The rates of the three outcome variables varied from 0.4% to 1.4% in the different study groups. After adjustment for the age and sex distributions of the different study groups in Model 1, the former refugee children from Iran and Chile had higher hazard ratios for all three outcomes compared with the Swedish comparison group: hazard ratios varied from 1.6 to 2.7. The

Psychiatric morbidity in former refugee children 12-20 years after settlement in Sweden

Table 1. Socio-demographic indicators by study group Sweden/ Sweden N= Sex (%)

Male Female

Mean age in 2001 (years) Mean age at immigration (years) Residence in 1985 (%)

Social welfare benefits in maternal household in 2001 (%)

Quintiles of disposable income (%)

Sweden/ L. America

Chile

Iran

1,218,968

3,166

3,431

6,008

51.4

51.9

52.6

57.7

48.6

48.1

47.4

42.3

26.8

22.1

23.3

22.8

-

-

9.5

9.0

Large city

42.3

71.5

64.2

63.6

Smaller city

43.4

25.6

29.9

34.5

Rural

14.3

2.9

5.9

1.9

Missing

3.4

8.0

9.6

9.3

No

93.3

79.3

68.0

65.1

Yes

3.3

12.7

22.4

25.7

1 (lowest)

18.8

40.6

45.8

51.3

2

29.0

20.8

23.9

21.2

3

20.1

17.2

16.4

13.1

4

21.6

13.1

10.3

8.6

5 (highest)

20.5

8.3

3.5

5.8

Table 2. Cox regression models for first hospital admission during 2002-2005

Cases

%

Model 1

Model 2

HR (95%CI)

HR (95%CI)

a. Psychotic disorders Sweden

7,896

0.6

1

1

Sweden/Latin America

14

0.4

1.7 (1.0-2.9)

1.3 (0.8-2.2)

Chile

17

0.5

1.9 (1.2-3.0)

1.1 (0.7-1.8)

Iran

43

0.7

2.7 (2.0-3.7)

1.5 (1.1-2.0)

b. Self-harm Sweden

7,896

0.6

1

1

Sweden/Latin America

31

1.0

1.2 (0.8-1.7)

0.9 (0.6-1.4)

Chile

46

1.3

1.9 (1.2-3.0)

1.0 (0.8-1.4)

Iran

74

1.2

1.6 (1.3-2.0)

0.9 (0.7-1.2)

6,216

0.5

1

1 1.1 (0.8-1.5)

c. Illicit drug abuse Sweden Sweden/Latin America

37

1.2

1.9 (1.4-2.7)

Chile

36

1.0

1.8 (1.3-2.5)

0.7 (0.5-1.0)

Iran

84

1.4

2.3 (1.9-2.9)

0.9 (0.7-1.1)

Model 1 is adjusted for sex and year of birth. Model 2 is adjusted for sex, year of birth, residence, disposable income in quintiles and social welfare benefits.

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Swedish-born comparison group with a Latin American heritage had hazard ratios similar to those of the former refugee children for illicit drug abuse and psychotic disorders, but a lower hazard ratio for self-harm. In Model 2 the analysis was adjusted for the two economic indicators and geographic residence, with the effect that hazard ratios between the different study groups were equalised for self-harm and illicit drug abuse, or in the case of Iranians much attenuated for psychotic disorders. 5. Discussion In this register follow–up of former refugee children from Chile and Iran 12-20 years after settlement in Sweden we found consistently higher risks for hospital admissions because of psychotic disorders, self-harm and illicit drug abuse in the former refugee children from Chile and Iran in Sweden compared with an ethnic Swedish comparison group, while the risks compared with Swedish-born people with a Latin American heritage were quite similar. Adjusting the analysis for two economic indicators and one geographic one greatly attenuated these increased risks. Previous studies in adulthood of children exposed to Nazi persecution (Keilson, 1979; Moskowitz, 1983), the Greek Civil war in 1948-9 (Dalianis-Karambatzikis, 1994) and persecution in Kampuchea (Sack et al., 1993) have demonstrated the capacity of children to recover from symptoms of traumatic stress, or at least to live without major impairment in their education, family life and work. This study indicates that former refugee children in Sweden have an increased risk of developing severe psychiatric morbidity and addiction in young adulthood, which at a first glance may be interpreted as a somewhat worse outcome compared with the studies just mentioned. When these results are compared with other studies of youth in immigrant families in Sweden, however, the results are strikingly similar. Youth and young adults with an immigrant background in Sweden have been reported to have twice the risk for psychotic disorders (Hjern et al., 2004) and self-inflicted injuries (Jablonska et al., 2009) compared with the general population, and two- to four-fold increased risks for illicit drug abuse (Hjern, 2004). For all three outcomes, adjusting for social factors greatly attenuated the risk of negative outcomes among former refugee children. The fact that risk levels among refugee children were similar to those found in Swedish-born children with a Latin American background, and that both risks were attenuated by the economic indicators, suggests that the increased risks have more to do with the social situation in exile than factors associated with persecution and war in the country of origin. Fazel et al. (2011) in a recent review of mental health of refugee children in high income countries found that there is a wealth of studies investigating-short term

Psychiatric morbidity in former refugee children 12-20 years after settlement in Sweden

outcomes of risk factors in the country of origin in a psychological framework, while the importance of risk factors in exile that can be influenced by policy or interventions in the host country has rarely been dealt with in research. This study indicates that the psychological framework in which the mental health of refugee children has hitherto been explained needs to be extended with theories that also include contextual aspects of exile. 6. Limitations The main advantage of the register design of this study is the possibility of creating large, nationally representative populations of study groups of former refugee children with very little attrition. The large sample size also makes it possible to study clinically relevant indicators. The outcome variables in this study, however, have to be considered indicators of quite severe and disabling forms of psychiatric morbidity and drug abuse, considering their low frequency. These indicators should not be interpreted as reflecting levels of less severe forms of mental health problems or general well-being in populations of former refugee children. The use of hospital discharge data as outcome variables brings with it the risk of bias in diagnosis and referral. In a recent study (Dalman et al., 2002) the validity of schizophrenia diagnoses of young patients in the National Discharge Register proved to be high; 86% fulfilled the DSM-IV criteria of schizophrenia syndrome. A Danish study found selective referral of immigrants to be of marginal importance in epidemiological studies of psychoses in Denmark (Mortensen et al., 1997), while some British studies (Bhui et al., 2003) have reported a certain, but limited ethnic variation of pathways to care. It seems probable that the Swedish situation is more similar to Denmark in this respect because of similarities in the health care system in these neighbouring societies and reports of reasonably equal access to care for ethnic minorities in Sweden (Hjern et al., 2001). Because of a tendency for refugee children in Sweden to be quite young when their family seeks asylum in Sweden, as well as a greater influx of refugees in the latter part of the 1980’s, the mean age of the refugee children in this study was considerably lower than that of the Swedish comparison group. This uneven age distribution was adjusted for in the multivariate analysis, but should be kept in mind when the results from this study on psychotic disorders are interpreted, since the number of cases on this outcome was quite low in the refugee study groups and the crude rates quite similar. It should be noted that the age of immigration to Sweden is systematically exaggerated since the great majority of these refugees can be expected to have had arrived in Sweden as asylum seekers (Hjern et al. 1998) and to have probably waited at least one year for their asylum application to be handled by Swedish authorities.

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7. Conclusions Many preventive strategies for refugee children are based on the discourse of traumatic stress and the assumption that traumatic events have long-lasting effects on mental health (Hjern & Jeppsson, 2004). The research presented above does not give much support to such assumptions. It rather seems to favour interventions targeting the socioeconomic disadvantage of refugee families in the host society. In a previous article we have presented an alternative preventive strategy to the ‘working through’ discourse (Hjern & Jeppsson, 2004). This strategy is built on social support within the existing educational and child health system and advocacy on behalf of these children on the local as well as the societal level. In conclusion, this study suggests that the socioeconomic context of exile has an important influence on the development of severe psychiatric problems of refugee children in the long term. Theories that can unite a long-term social inequality perspective with a short-term psychological perspective of stress are needed to understand the development of psychiatric morbidity in former refugee children in young adulthood. References Almquist, K. & Brandell, M. (1997). Refugee children in Sweden: post-traumatic stress disorder in Iranian preschool children exposed to organized violence. Child Abuse & Neglect, 4, 351-366. Angel, B., Hjern, A. & Ingleby, D. (2001). Effects of war and organized violence on children: a study of Bosnian refugees in Sweden. American Journal of Orthopsychiatry, 71, 4-15. Bhui, K., Stansfeld, S., Hull, S., Priebe, S., Mole, F. & Feder, G. (2003). Ethnic variations in pathways to and use of specialist mental health services in the UK: Systematic review. British Journal of Psychiatry, 182, 105-116 Dalman, C., Broms, J., Cullberg, J. & Allebeck, P. (2002). Young cases of schziophrenia identified in a national inpatient register- Are the diagnoses valid? Social Psychiatry and Psychiatric Epidemiology, 37, 527-531. Dalgleish, T., Joseph, S., Thrasher, S., et al. (1996). Crisis support following the Herald of Free Enterprise disaster: a longitudinal perspective. Journal of Trauma and Stress, 9, 833-845. Dalianis-Karambatzikis, A. (1994). Children in turmoil during the Greek civil war 1946-49: today’s adults. A longitudinal study on children confined with their mothers in prison. In: Institution for the health of women and children. Stockholm: Karolinska Institutet.

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Ekblad, S. (1993). Psychosocial adaptation of children while housed in a Swedish refugee camp: aftermath of the collapse of Yugoslavia. Stress Medicine, 9, 159-166. Fazel, M., Reed, R.V., Panter-Brick, C. & Stein, A. (2011). Mental health of displaced and refugee children resettled in high-income countries: risk and protective factors. The Lancet. 2011 Aug 9. [Epub ahead of print] Hjern, A. (2004). Illicit drug abuse in second-generation immigrants: a register study in a national cohort of Swedish residents. Scandinavian Journal of Public Health, 32, 40-6. Hjern, A. & Angel, B. (2000). Organized violence and mental health of refugee children in exile: a six-year follow-up. Acta Paediatrica, 89, 722-727. Hjern, A., Angel, B. & Höjer, B. (1991). Persecution and behavior: a report of refugee children from Chile. Child Abuse and Neglect, 15, 239-248. Hjern, A., Angel, B. & Jeppsson, O. (1998). Political violence, family stress and mental health of refugee children in exile. Scandinavian Journal of Social Medicine, 1998, 2618-25. Hjern, A., Haglund, B., Persson, G. & Rosen, M. (2001). Is there equity in access to health services for ethnic minorities in Sweden? European Journal of Public Health, 11, 147-152. Hjern, A. & Jeppsson, O. (2004). Mental health care for refugee children. In D. Ingleby (Ed.) Forced migration and mental health: Rethinking the care of refugees and displaced persons (pp. 115-128). New York: Springer. Hjern, A., Wicks, S. & Dalman, C. (2004). Social adversity contributes to high morbidity in psychoses in immigrants – a national cohort study in two generations of Swedish residents. Psychological Medicine, 34, 1025-1033. Jablonska, B., Lindberg, L., Lindblad, F. & Hjern, A. (2009). Ethnicity, socio-economic status and self-harm in Swedish youth: a national cohort study. Psychological Medicine, 39, 87-94. Keilson, H. (1979). Sequential traumatization in children, Jerusalem: The Magnes Press/ Hebrew University. Loring, M. & Powell, B. (1988). Gender, race and DSM-III: A study of the objectivity of psychiatric diagnostic behavior. Journal of Health and Social Behavior, 29, 1-22. Montgomery, E. (1998) Refugee children from the Middle East. Scandinavian Journal of Social Medicine, Suppl 54. Montgomery, E. (2010). Trauma and resilience in young refugees: a 9-year follow-up study. Developmental Psychopathology, 22, 477-89. Montgomery, E. (2011). Trauma, exile and mental health in young refugees. Acta Psychiatrica Scandinavica, Suppl. 440, 1-46. Mortensen, P., Pedersen, C., Westergaard, T., Wohlfahrt, J., Ewald, H., Mors, O., Andersen, P. & Melbye, M. (1999). Effects of family history and place and season of birth on the risk of schizophrenia. New England Journal of Medicine, 340, 603- 608. Moskowitz, S. (1983). Love despite hate. Child survivors of the Holocaust and their adult lives. New York: Schochen books.

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Pennebaker, J. (1997). Confession and Inhibition: The beginnings of an approach. In J. Pennebaker (Ed.) Opening up – The healing power of expressing emotions (pp. 5-18). New York: Guilford Press. Sack, W.H., Clarke, G., Ham, C. et al. (1993). A 6-year follow-up study of Cambodian refugee adolescents traumatized as children. Journal of the American Academy of Child and Adolescent Psychiatry, 32, 431-437. Sack W.H., Him, C. & Dickason, D. (1999). Twelve-year follow-up study of Khmer youths who suffered massive war trauma as children. Journal of the American Academy of Child and Adolescent Psychiatry, 38(9), 1173-9. Summerfield, D. (1999). A critique of seven assumptions behind psychological trauma programmes in war affected areas. Social Science and Medicine, 48, 1449-1462. Wellenkamp, J. (1997). Cultural similarities and differences regarding emotional disclosure: some examples from Indonesia and the Pacific. In J. Pennebaker (Ed.) Opening up – The healing power of expressing emotions (pp. 293-311). New York: Guilford Press.

Acculturation, depression and identity negotiations among young second-generation Somali migrants

Chapter 8

Acculturation, depression and identity negotiations among young second-generation Somali migrants

Warsan Osman Saleh, Kam Bhui & Nasir Warfa

1. Summary The acculturation process can be stress-provoking. The experience may be even more complicated for second-generation migrants, who have to adapt to both the culture of their parents and the host culture. The amount of stress this generates depends on the ease of interaction and the inherent relationship between the two cultures. Issues such as family conflicts, social representations, racism and poor peer relationships could exacerbate the level of stress experienced by the acculturating individuals. This may place second-generation groups at greater risk of mental health problems compared with the first generation of migrants. The study reported here explored how depressed second-generation Somali migrants living in London experience acculturation. The main aim is to describe and interpret the experiences of acculturation amongst this group as they go through life and confront with changing situations. A qualitative research method was chosen, in particular because it would allow the exploration of cultural meanings and metaphors. Semi-structured interviews were conducted with participants recruited from mental health services in the London Borough of Camden. Transcripts were analysed using Interpretative Phenomenological Analysis. The analysis uncovered five major themes: importance of culture, onset of acculturation, the family and the acculturating individual, the society and the acculturating individual, acculturation process and outcome.. The findings are discussed against the background of existing literature and the limitations of the study are analysed. Recommendations for both clinicians and researchers working with this group are made.

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2. Introduction Acculturation is defined as the process that results when groups of individuals with different cultures come into continuous contact (Bhui et al., 2005). These cultural exchanges can be observed across different domains such as attitudes, values, behaviours, and sense of cultural identity (Cue’llar et al., 1995; Ryder et al., 2000). Acculturation leads to modifications in a group’s customs and in their economic and political life (Berry, 2003). There are associated psychological changes which entail alterations in individuals’ attitudes toward the host nation (in the case of migrants) and in their sense of belonging, tradition, and cultural identity (Phinney, 2001). Acculturation – therefore – has psychological implications and influences wellbeing, the acquisition of knowledge, networks and social skills necessary for successful functioning in a new and unfamiliar social context (Ward et al., 2001). During the period after arrival in a new country, the sense of self may dissipate and individuals may become deprived of familiar reference points which are cues for their social rituals and behaviour and underlie the substance of their identity (Anderson, 1994). Young migrants who are already negotiating the transition from an adolescent to an adult identity are particularly vulnerable to confusion about loyalties and a sense of belonging to a specific group. Emotional distress may culminate in mental health problems including psychosomatic symptoms (Williams & Berry, 1991). This distress can be compounded by social exclusion, alienation, marginalisation and financial strain. Mena et al. (1987) found that first-generation migrants experienced more acculturative stress compared with second-generation migrants or those who migrated before the age of 12, while Padilla et al. (1985) found that migrants who were first-generation girls and second-generation boys were particularly vulnerable to psychiatric problems. Significant variations have been found in the relationship between psychiatric and psychological problems and acculturation across different ethnic groups. Snyder (1987) demonstrated positive correlations between acculturative stress and levels of depression amongst young Mexican immigrant women. In another study, Hovey & King (1996) showed that some acculturating Latino adolescents experienced high levels of stress. These adolescents were also at risk of experiencing a critical level of depression and suicidal ideation. Others suggest that the health advantages of newly-arrived migrants dissipate over time; in some studies, second- and third-generation minority youth demonstrate more mental health problems and risk behaviour than the first generation and when compared with the native-born population (Hernandez et al., 1998; Oppedal & Roysamb, 2004). Family conflict (Farver et al., 2002), perceived racism (Helms, 1994) and peer relationships (Oppedal & Roysamb, 2004) were found to act as risks for mental health problems. The level of stress experienced is thought

Acculturation, depression and identity negotiations among young second-generation Somali migrants

to depend on the dynamics and nature of family relationships. If the family is supportive and well integrated, this is thought to have a positive impact. Family acculturation and group acculturation are therefore important contexts for individual acculturation. Most studies that have been carried out on the stresses of acculturation do not capture the more complex negotiated identities that are part and parcel of any acculturative process involving multiple identities. Researching acculturation from the assumption of multiple rather than unitary identities is fraught with problems of measurement and the absence of an overall theoretical framework that accommodates many contrasting cultures and group identifiers. Simplified bi-directional models of acculturation are certainly easier to measure and conceptualise across many cultural groups, although even in this instance, the specific behavioural or attitudinal domains of interest vary by ethnic group. Qualitative methods are invaluable where a general over-arching theory is lacking, and where new conceptualisations of identity require empirical information in a form that is experienced and reported by research participants, before it is reduced to discrete variables suited for epidemiological work. In particular, the notion of multiple identities in conflict and potential resolutions to this conflict requires exploration with qualitative data tapping the subjects’ own experience. In this chapter, we report a qualitative study of acculturative processes in Somali men and women in the UK who are in treatment for depressive symptoms and depressed mood. 3. Aims, sample and methods 3.1 Aims This study set out to investigate the experience of acculturation among Somali people with depressive illness, focusing in particular on the nature of acculturation processes and the way these influence the experience of depression and identity negotiations. The study objectives were (i) to establish which identities were negotiated during acculturation, examining the prominence of a national British identity, a national Somali identity, Islamic identity, youth identity, and any sub-cultural identities, and (ii) to explore whether this negotiation may be related to manifest depressive symptoms, mental distress and/or social distress. 3.2 Sample After approval of the project by the Camden NHS ethics committee, participants were recruited from local mental health services. Publicity materials about the research project and contact details of the investigator were developed and circulated widely in Camden to sampling sites. Referrals to the study were from GPs, primary

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care mental health workers (PCMHWs), and services that offer psychological interventions. – The research was discussed with GP practices and they were asked to pass information of those who meet the inclusion criteria and agreed to take part in the study to the investigator. – Each PCMHW was able to discuss the research project and asked clients who meet the inclusion criteria if they wanted to take part. If they agreed, their details were passed on to the investigator who subsequently contacted them. Participants referred by PCMHWs were those with active or recurrent depression. – The project was also discussed with mental health services and community organisations in and around Camden. Information leaflets were left for both self-referrals and referrals by mental health staff. Purposive sampling was used (Patton, 1990). Nine second-generation Somali participants were recruited, four men and five women, aged 18 or above. All participants were first contacted by telephone to see if they fit the inclusion criteria: aged 18 or over, mild, moderate, and severe depression, of Somali origin by both parents, second-generation (i.e. born in the UK or came before the age 12). Exclusion criteria included not being depressed or never having had a history of depression; actively suicidal; and acute psychosis. Participants were informed about the nature of the research project and information was provided in writing, as well as giving an oral explanation. They were told they could withdraw at any point and that services they used would not be informed about whether or not they participated. Participants were interviewed in GP practices or within mental health services. 3.3. Methods A standardised scale, the Beck Depression Inventory (BDI), was used to confirm the presence of depressive symptoms amongst participants but was not used for diagnostic purposes. The BDI is a self-report inventory with 21 items that measures characteristics, attitudes and symptoms of depression (Beck et al., 1988). It assigns respondents a score and subdivides the range into the categories Mild, Moderate or Severe Depression. Semi-structured interviews were used to explore the experience of participants. Such interviews offer topics to the interviewee that are carefully designed to elicit his or her ideas and opinions, without leading the interviewee toward preconceived choices (Willig, 2001). The investigator developed a list of prompting questions that were used flexibly; their order, content and structure depended on participants’ answers. These questions were informed by literature review. Some items to assess

Acculturation, depression and identity negotiations among young second-generation Somali migrants

cultural identity were adapted from a study of second-generation migrants in East London (Bhui, 2005): these were about choice of friends and clothes as a measure of acculturation styles. As the study was concerned with experiences of secondgeneration migrants who spoke fluent English, translation of interview questions was not necessary. 3.4 Analysis This stage started with listening to the tapes for familiarisation, and then transcribing them. After this, the transcripts were read and annotated to ensure clarity whilst still reflecting the original words, tone and emphases. The analytic procedure used the principles of Interpretative Phenomenological Analysis (IPA) as outlined by Smith et al. (1995) and Willig (2001). IPA is a method for undertaking qualitative data analysis and is concerned with how participants perceive and make sense of things that are happening to them. It necessitates the use of a flexible data collection method such as semi-structured interviews. The study followed the standard IPA procedure; the data was analysed separately following clear steps that were repeated for each transcript. For a full description of the standard IPA procedure, see Smith et al. (1995). The small size of the study does not undermine its validity due to the philosophical assumptions that underpin qualitative research, which involve in-depth analysis of the data (Willig, 2001). Internal validity and reliability of the study was accounted for by carrying a research diary. This allowed the researcher to reflect on assumptions and analysis throughout the research process. Additionally, the researcher sought independent verifications of emergent themes and subthemes by colleagues. 4. Results We carried out in-depth interviews with nine participants, four males and five females, with a mean age of 24 and 30 respectively. The data was organised into five major themes and 14 sub-themes (Table 1). The researcher attempted to relate the themes to narrative accounts that focus on the areas on which the topic guide was based. Direct quotations were used to support the analysis. The data can be understood in terms of interrelated themes that encompass the lived experience. In the first theme, participants attempted to make sense of what culture means to them. In the second, they attempted to view it from within the family. The third is about looking at their culture within the wider society. And finally, a certain cultural identity emerges which stems from the understanding of the self in relation to all the other themes.

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Table 1. Master and sub-themes from interview data Master themes

Sub-themes

1. Importance of Culture

Culture as a source of identity and a point of reference Culture and faith

2. Onset of acculturation

Early experiences

3. The family and the acculturating individual Imposition of own culture Lack of understanding of British culture Faith and family Managing conflicts 4. The society and the acculturating individual Perception of racism Classmates / friends Lack of support from teachers 5. Acculturation process and outcomes

Somali versus British culture Feeling an outsider Feeling depressed Finding a cultural identity

4.1 Research question 1: Exploring the onset of acculturation Almost all participants identified early adolescence as the period in which they realised that their identity was different from that of their white counterparts: this can be the onset of awareness of acculturation processes or actual onset of acculturation processes. Participants actively began engaging in exploring the differences and what they mean to them as individuals, and the consequences for their lives and relationships. There did not seem to be any outside agents that forced this sudden realisation, such as different treatment by school friends or teachers. Even if the respondents were in schools which might be described as tolerant, thoughts about differences were still evoked, suggesting this was part of the maturation process. Participants said that differences in physical appearance were what brought these thoughts out the most. I think it was when I became a teenager.....the physical difference cannot be ignored....I knew I was different....but it was not a question in my mind before that... My school mates never treated me differently...but I knew I was different....I was probably in year five or six when I started thinking about this....

Acculturation, depression and identity negotiations among young second-generation Somali migrants

4.2 Research question 2: Exploring agents of acculturation Families were felt to highlight their own cultural values as opposed to the wider British culture. They made a clear distinction between their values and those of the wider society, highlighting what was acceptable and what was not. This is where conflicts within families started and the conflict between cultures became apparent. Most discussions with families revolved around issues such a clothes or friends, as well as gender differences in roles and expectations. Many participants identified their relationships with their family as very distressing, as families were unwilling to negotiate or accept any compromise to their cultural identity. I guess this was the most difficult thing....if you have conflict with others you can stop talking to them...but parents...what you should do to them... Not being able to get on with your family is difficult.....I mean they are your family.....

Imposition of own culture. Participants reported that their families demonstrated fear of losing their traditions and were protective of their cultural practices and rights. My parents always tried to tell me that we have religion, and values, and we must keep them....as if the wider community doesn’t. They were so strict with their cultural values...they thought if I lost them I will be someone....like....with no values....or religion.

Lack of understanding of British culture. Participants thought that their families showed little understanding of the British culture. This caused conflicts and constant arguments. It was as if they have passed the judgments......without even having an understanding of the British culture.... They thought that the dominant features of the British culture...is drug, alcohol, sex and having fun....which are seen obviously as immoral in our culture. It was like fighting taboos.....very complicated....if I was late for an hour... they though I was busy doing something immoral…..

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4.3 Research question 3: To explore the acculturation process and its outcome Somali versus British culture. Most participants described the process of negotiating a cultural identity as very stressful. Renegotiation of identities took place on many levels. At first, participants observed differences between the two cultures through analysing the wider British culture and their original culture. Cultural differences were sustained by the family environment; distinct gender roles were seen as important, as well as the type of clothing and choice of friends. Most participants faced difficulties in understanding these differences and this caused constant conflict at home with parents. With regard to the girls, the conflicts seem to have revolved around choice of friends: I wasn’t allowed to stay out for longer period after school...because I was a girl....my brother didn’t seem to have similar problems. My mother didn’t like me to hang around with some of the boys...because she had some stereotypical views about them.... like drinking and drugs... she preferred that I hung around with Somalis. I used to be smacked or treated really badly for going out with friends...... going out with guys..... I don’t understand why my parents used to argue as much about things.

Feeling an outsider. There were two types of responses; some felt like outsiders in their own culture, others felt that they were strangers to both cultures, and this led them to come up with their own culture. As far I am concerned I am Muslim first and foremost. I don’t like aspects of my culture where everyone helps everyone and being close.....and I don’t know if my friendship with people from other cultures is right...I feel guilty when I do things with my other friends... but I don’t have a Somali friend either.... I do least with my own people.....a lot of people in my culture are judgemental...because I am not wearing a hijaab (headscarf)...or because I smoke.... having the odd drink...they won’t accept it in my own culture, that is the main reason why I don’t socialise or do activities in my own culture.

Feeling depressed. Most participants described their depression as a recurrent one and they mainly identified experiencing their first episodes as teenagers at school.

Acculturation, depression and identity negotiations among young second-generation Somali migrants

I remember feeling depressed the first time at school and this was mainly because of the conflict at home I think....I don’t know....I just felt lost.... didn’t know who I was....and what I wanted. I felt this way before at school.. because I felt terribly alone...even though I had many friends.....I just wasn’t happy. My first episode was at school when the problems started and I didn’t have anyone to share my school problems with at home... I couldn’t tell my parents...because they wouldn’t have understood. My parents thought I was always in the wrong at school....this was really difficult for me....I was suffering.....

Finding a cultural identity. Two types of acculturative outcomes emerged in this study. Participants described rejection of their own culture (assimilation), or rejection of both the dominant culture and their own (marginalisation). Sometimes they reflected that these are related to loss and isolation, and therefore depressive feelings. As ‘assimilated’ individuals, three participants described their preference for the dominant culture. I see myself as more British than Somali....but I accept the Somali culture as my parent’s not mine. I can’t understand my parents culture...I don’t think it is relevant to me as British. I respect my parents but the Somali culture....no....

Four others (‘marginalised’) described not being content with either culture. This group described more distress than others. I don’t know....sometimes I feel that I am more of a British than a Somali....others I feel that I am a Somali....most of the times though I feel I am neither.....I am a Muslim more than both.... I feel guilty about following another culture than Allah. I don’t know don’t know which one is right.... I don’t feel I am both anyway... and all my friends are like me.....of mixed race or different cultures... I feel alien.

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Choice of friends was seen as more relevant to cultural identity than the way one dressed. Most participants said that they wore both their traditional clothes and those of the dominant culture interchangeably as they saw fit. 5. Discussion The results of this exploratory study give us some insight into the experiences of Somali second-generation migrants with depression. There is ample evidence in the literature of a relationship between depression and certain types of acculturation (Berry et al., 1989; Berry, 1997; Sawrikar & Hunt, 2005; Bhui et al., 2005). The aim of the present study was not so much to confirm this link as to explore the acculturation experience amongst this group. Culture seems to be of a particular importance to these respondents. It has been described as necessary for identity formation and for gaining a sense of self. Indeed, one aspect of people’s self-identity is that they belong to a certain cultural group. Thus they have sense of themselves as being, in the case of this study, British or Somali. Participants in this study were engaged in the process of trying to reach a cultural identity acceptable to themselves. This seemed to be a conscious process that they willingly participated in. The onset of the acculturation process seems to correspond to the onset of social and cultural identity formation in late childhood and early adolescence. Many studies show that the acculturation of young immigrants coincides with the development of social identity during adolescence. However, the ways in which this is related to mental health problems, and the factors that help young people to attain a cultural identity, are less well investigated in the literature. Research has suggested that between the ages of 3 and 9 (Helms, 1994; Saenz et al., 1995), children are able to use appropriate racial or ethnic labels to identify themselves on the basis of observable characteristics such as skin colour, facial features and or language. They understand that they will always belong to that group, they categorise others into appropriate groups, and they make social comparisons regarding the value of one group over another. Adolescence then becomes a critical period for the development of cultural identity, as it gives the individual a basis by which he or she can understand themselves and their relations with others. This process seems to be stress-provoking. Most participants in the current study described their first episodes of depression within this stage. Risk and protective factors that contribute to or ease the stress level as experienced by this group seem to conform to previous findings (Brooks et al., 2002; Berry, 1997; Bhui et al, 2005). For example, family conflict, peer relationships and the level of acceptance by members of the wider society are all factors seen as affecting the quality

Acculturation, depression and identity negotiations among young second-generation Somali migrants

of the experience of acculturation (Farver et al., 2002; Helms, 1994; Oppedal & Roysamb, 2004). Family conflict emerges from our study as a risk factor. Participants showed that they were unable to resolve this conflict and that this added to their stress. Family conflict did not help them to understand their culture or to resolve the differences between the host and native cultures. Considering the role of the family within the Somali community, which is a core characteristics of the Somali culture, these findings are not surprising. Evidence shows that the family context exerts the most powerful social influences on adolescent development. Parents have a lifelong history with their children and maintain a significant amount of influence as children pass into adolescence (Steinberg et al., 2001). Parental support, communication with parents, and the quality of parent-adolescent attachments and relationships are seen as factors that could be risk or protective factors. Adolescents whose relationships with parents are positive tend to develop a more coherent and integrated sense of identity, whereas those whose family relationships are distant or conflicted tend to develop a more fragmented sense of identity (Adams et al., 1987; Grotevant & Cooper, 1986). Similarly, family processes, including lack of parental involvement and support and poor parent-adolescent communication, are strongly related to adolescent delinquency and conduct problems, as well as other negative outcomes such as substance misuse (Brook et al., 2001; Schwartz et al, 2005). Parental support was found to be positively correlated with better mental health. Also, studies on immigrant families suggest that the cultural distance between parents and children can create generational dissonance within the family that strains the parent-child relationship, which in turn is associated with adverse child outcomes (Farver et al., 2002; Portes & Rumbaut, 1996; Tseng & Fuligni, 2000). Clues picked up from the environment in relation to the group and the self seem to be important factors that influence the acculturation process. Erikson (1968) emphasised that identity is formed in a dialectical interaction between individuals and their communal culture. In general, this study showed that acculturation is not a process involving acculturating individuals alone. It is a process that involves parents and the wider systems involved in young people’s lives. A successful resettlement therefore may need negotiations with many agencies as well as parents. If parents are unaware of the wider culture, and that fact that ‘being British’ does not involve abandoning one’s sense of who one is, they may view it as hostile and be protective.

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6. Clinical implications Mental health services should be places in which individuals going through difficulties are helped to get back to their usual functioning levels. In order to do so, it is paramount that assessments and treatment plans are tailored to individuals. It is therefore important when dealing with second-generation migrants that they are assessed within a cultural context. Clinical practice could be informed by an understanding of the experiences of this group, identifying how cultural adaptation is managed and examining what enhances or is detrimental to psychological well-being. This study shows that it is essential to explore elements related to acculturation, family and peer relationships, and perceptions of racism in the wider community. It is also important to develop assessment tools used by clinicians to accommodate migration stresses. Professionals can benefit from enhanced understanding of coping strategies used by this client group in order to support the self-help process. For example, it will be useful to study the role of religion in coping with stress related to acculturation. There is evidence in the literature to suggest that spirituality promotes better mental health (Koenig, 2008; Dein, 2004). Interventions should focus on helping acculturating individuals to discuss what cultural incongruence means to them. 7. Limitations of the study The present study should be seen as exploratory, as there has been little previous research on Somali second-generation migrants with mental health problems. The limited size of the sample and the fact that it has been carried out only with a Somali sample, means we cannot generalise the findings to other groups. The data analysis technique used in this study may have limited how much we could infer from the data. The method is concerned with meanings and world views of participants, and pays no attention to the language used which may have told us much about participants’ inner world. Somalis are an oral society, famously known as community of poets and as a result put great emphasis on the use of language. References Adams, G.R., Dyk, P.A.H. & Bennion, L.D. (1987). Parent-adolescent relationships and identity formation. Family Perspective, 21, 249–260. Anderson, L. (1994). A new look at an old construct: Cross-cultural adaptation. International Journal of Intercultural Relations, 18, 193-328. Beck, A.T., Steer, R.A. & Garbin, M.G. (1988). Psychometric properties of the Beck Depression Inventory: Twenty-five years of evaluation. Clinical Psychology Review,

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8(1), 77-100. Berry, J.W., Kim, U., Power, S., Young, M. & Bujaki, M. (1989). Acculturation attitudes in plural societies. Applied Psychology: An International Review, 38, 185-206. Berry, J.W. (1997). Immigration, acculturation and adaptation. Applied Psychology: An International Review, 46, 5-68 Berry, J.W. (2003). Conceptual approaches to acculturation. In K. Chun, P. Balls-Organista & G. Marin (Eds.) Acculturation: Advances in theory, measurement and applied research (pp 17-37). Washington, DC: APA Press. Bhui, K., Lawrence, A., Klineberg, E., Woodley-Jones, D., Taylor, S., Stansfeld, S., Viner, R. & Booy, R. (2005). Acculturation and health status among African-Caribbean, Bangladeshi and White British adolescents--validation and findings from the RELACHS study. Social Psychiatry and Psychiatric Epidemiology, 40(4), 259-66. Brooks, T.L., Harris, S.K., Trall, J.S. & Woods, E.R. (2002). Association of adolescent risk behaviours with mental health symptoms in high school students. Journal of Adolescent Health, 31, 240-246. Cue’llar, I., Arnold, B., & Maldonado, R. (1995). Acculturation rating scale for Mexican Americans – II: a revision of the original ARSMA scale. Hispanic Journal of Behavioural Sciences, 17(3), 275-304. Dein, S. (2004). Working with patients with religious beliefs. Advances in Psychiatric Treatment, 10, 287-294. Erikson, E. (1968). Identity, youth and crisis, New York: Norton Farver, J.A.M., Narang, S.K., & Bhadha, B.R. (2002) East meets West: ethnic identity, acculturation, and conflict in Asian Indian families. Journal of Family Psychology, 16, 338-350. Grotevant, H.D., Cooper, C.R. (1986). Individuation in family relationships: A perspective on individual differences in the development of identity and role-taking skill in adolescence. Human Development, 29, 82–100. Helms, J. E. (1994). Racial identity in the school environment. In: P. Pedersen & J.C. Carey (Eds.) Multicultural counselling in schools: A practical handbook (pp. 19-58). Boston, MA: Allan and Bacon. Hovey, J.D. & King, C.A. (1996). Acculturative stress, depression, and suicidal ideation among immigrant and second-generation Latino adolescents. Journal of the American Academy of Child and Adolescent Psychiatry, 35, 1183–1192. Mena, F.J, Padilla, A.M. & Maldonado, M. (1987). Acculturative Stress and Specific Coping Strategies among Immigrant and Later Generation College Students. Hispanic Journal of Behavioral Sciences, 9(2), 207-225. Oppedal, B. & Roysamb, E. (2004). Mental health, life stress, and social support among young Norwegian adolescents with immigrant and host national background. Scandinavian Journal of Psychology, 45, 131-44. Padilla, A., Wagatsuma, Y., Lindholm, K. (1985) Acculturation and personality as predictors of stress in Japanese and Japanese Americans. Journal of Social Psychology, 125, 295-305.

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Patton, M.Q. (1990). Qualitative evaluation and research methods (2nd ed.) Newbury Park, CA: Sage Publications. Phinney, J.S. (2001). Ethnic identity, immigration, and well-being: an international perspective. Journal of Social Issues, 57(3), 493-510. Portes, A. & Rumbaut, R.G. (1996). Immigrant America: a portrait (2nd ed.) Berkeley, CA: University of California Press. Ryder, A.G., Alden, L.E., & Paulhus, D. L. (2000). Is acculturation unidimensional or bidimensional? A head to head comparison in the prediction of personality, selfidentity, and adjustment. Journal of Personality and Social Psychology, 79(1), 77-88. Sawrikar, P., & Hunt, C. (2005). The relationship between mental health, cultural identity and cultural values in non-English speaking background (NESB) Australian adolescents. Behaviour Change, 22(2), 97-113. Saenz, R., Hwang, S., Aguire, B.E. & Anderson, R.N. (1995). Persistence and change in Asian identity among children of intermarried couples. Sociological Perspectives, 38(2), 175-194. Smith, J.A., Harre, R. & Van Langenhove, L. (1995). Ideography and the case study. In Rethinking Psychology (pp. 59–69). London: Sage Publications. Snyder, A. de (1987). Factors associated with acculturative stress and depressive symptomology among married Mexican women. Psychology of Women, 11, 475-488. Steinberg, L., Lamborn, S.D., Dornbush, S.M., Darling, N. (2001) The impact of parenting practices on adolescent achievement: Authoritative parenting, school involvement, and encouragement to succeed. Child Development, 63, 1266-1281. Stevens, R. (2003). Somali refugees’ transition to the UK (Unpublished doctoral thesis). University of Kent at Canterbury. Schwartz, S. J., Pantin, H., Prado, G., Sullivan, S. & Szapocznik, J. (2005). Family Functioning, Identity, and Problem Behavior in Hispanic Immigrant Early Adolescents. Journal of Early Adolescence, 25(4), 392–420. Tseng, V. & Fuligni, A.J. (2000). Parent- adolescent language use and relationships among immigrant families with East Asian, Filipino and Latin American backgrounds. Journal of Marriage and the Family, 62, 565-476. Ward, C., Bochner, S. & Furnham, A., (2001). The psychology of culture shock. Hove: Routledge. Williams C.L. & Berry J.W. (1991). Primary prevention of acculturative stress among refugees: application of psychological theory and practice. American Psychologist, 46(6), 632-641. Willig, C. (2001) Introducing qualitative research in Psychology. Oxford: Oxford University Press.

Health issues among female migrant domestic workers

Chapter 9

Health issues among female migrant domestic workers

Christiana Kouta & Charis Kaite

1. Summary Female migrant domestic workers face discrimination in the health care system concerning their access to good quality health services, as well as in participation in policy and decision making (ILO, 2010; MIGS, 2008) In 2008, according to Flander (2011), 48% of immigrants coming to Europe were female. In Cyprus, Italy, Spain, France and Ireland female migrants reportedly outnumber males. In addition, data collected in 2005 from 25 EU Member States showed that the fourth and fifth largest occupational categories for females were those of domestic workers. In recent years there has been a large influx of Filipino, Sri Lankan and Vietnamese female migrant domestic workers to Cyprus (Flander, 2011; Eurostat, 2008). In Cyprus, from 2000 to 2010 there were 88,156 female immigrants; international migrants as a percentage of the population were 17.5%, and more than half of all migrants in 2010 were female, most of them being domestic workers (UN DESA, 2009). The aims of this chapter are to: a) review international literature on female domestic workers’ health, b) identify international strategies and policies in relation to this issue, c) describe the situation in Cyprus and other European countries and d) provide recommendations in order to reduce health inequalities affecting female migrant domestic workers. 2. Introduction According to the constitution of the World Health Organization (WHO, 1946), “The enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being without the distinction of race, religion, and political belief, economic or social condition”. However, female migrant domestic workers suffer multi-

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ple discrimination as women and as migrants. Those who do not speak the language of the host country and do not have formal employment are less likely to benefit from the health care system of the host nation (Bollini et al., 2007). Female migrant domestic workers are usually dependent on men and are often unable to access the health care system because of lack of health insurance (Adanu & Johnson, 2009). For the purpose of the current chapter the following definitions will be adopted: – Domestic workers are persons who work within the employer’s household performing household services for an individual or a family (e.g. care for children, elderly people, cleaning, cooking, ironing, shopping). Some domestic workers live within the household where they work; others have their own accommodation and report for work for a specific number of hours, sometimes having more than one employer (CARAM Asia, 2005). – Undocumented migrants are third country nationals who are not entitled to stay or work in an EU country. National legislations differ in defining undocumented migrants (HUMA, 2009). The rights and protection of female migrant domestic workers are often undermined due to lack of recognition of domestic work in labour laws or other regulatory frameworks and this may affect their health (ILO, 2010; 2011). According to the SOPEMI report (OECD, 2003), more than 10% of foreign workers in Greece, Italy and Spain are employed as domestic workers. In France, about 51,000 provide care for elderly people and children at home, while in Italy 950,000 are employed in the care of the elderly. In Italy, approximately 65,000 documented Filipinos are employed as domestic workers and about half of them are undocumented (Lindio-McGovern, 2003). 3. Background According to data provided by Eurostat (2008), collected in 2005 from 25 EU Member States, the fourth and fifth largest occupational categories for women were those of ‘domestic workers’ and ‘personal care workers’. Domestic labour is particularly vulnerable work, since research shows that employers of female migrant domestic workers are often accused of psychological abuse; physical assault and battery; sexual violence; limiting freedom of movement by withholding passports or forbidding employees to leave the house; imposing extremely long working hours, and denying privacy and access to health care to female migrant domestic workers (Eurostat, 2008; UNFPA, 2006). Domestic work mostly takes place in the informal economy and is therefore not subject to regulation and surveillance. The European Trade Union Confedera-

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tion (ETUC, 2005:12) quoted an estimate that 70-80% of all domestic work may be undeclared. In many countries, domestic work does not qualify as ‘work’ for the purposes of obtaining a work permit (Kontos, 2009), so many domestic migrant workers are not legally resident. An increasing number of domestic workers in EU countries work for the care of the elderly (Oso-Casa & Garson, 2005). Many of them will be classified as ‘care workers’ rather than domestic workers. Female migrant domestic workers suffer from inequalities that threaten their health due to barriers in accessing health services, including reproductive health services (e.g. lack of health insurance or national health schemes or unaffordable fees for paying healthcare costs). In addition, their living conditions in the host country may be poor, without running water or adequate sanitary facilities, or lacking in privacy and hygiene. They are sometimes subjected to sex-discriminatory mandatory HIV/AIDS testing or testing for other infections without their consent, and if the test proves positive they face loss of their job or deportation. All of these problems are made worse by limited access to the health system and other social services in most EU countries (Sharma and Cottrell, 2010). General Recommendation 26 of the Convention on the Elimination of All forms of Discrimination against Women (CEDAW) (UN, 2008b) states in Article 24d that: State parties should ensure the provision of standardized and authentic health certificates if required by countries of destination and require prospective employers to purchase medical insurance for female migrant workers. All required pre-departure HIV/AIDS testing or pre-departure health examinations must be respectful of the human rights of female migrants. Special attention should be given to the provision of free or affordable services and to the problems of stigmatization.

For undocumented migrant female domestic workers who are working to support their own families it may be very difficult to visit their own country, so that they often have to leave their children and family behind for long periods. Apart from the destructive effect on family life, these women are in a position of powerlessness. They may only learn after the event that their husband has left them or that the money they have been sending home has been misappropriated. When an undocumented female domestic worker cares for an elderly person and this person dies, quite apart from having to cope with the grief that may ensue, the migrant may be left without income or abode and with very few ways of finding a new employer (Ingleby, 2011). Intersectionality theory (Veenstra, 2011) argues that those who are at the intersection of multiple disadvantages experience more than the sum of all disadvantages together. Undocumented female migrants are trebly victimised for being

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women, migrants and undocumented; they cannot, for example, complain to the police due to fear of deportation. They are probably also unaware of their rights. According to the research carried out by the Commission for Filipino Migrant Workers (CFMW, 2005) based on interviews with 182 female migrant domestic workers, domestic workers in the Netherlands work without social benefits, access to health care and education. Further, participants reported lack of public health care and not being able to benefit from preventive health care services such as check-up for tuberculosis. However, a few migrants chose to have a private health insurance. The most frequent reported health problems of the domestic workers in the Netherlands were fatigue and stress. The former UN Special Rapporteur on the human rights of migrants, Gabriela Rodriguez Pizzaro, pointed out the difficulties which female migrant domestic workers experience in accessing health care services, even in cases of accidents occurring during working time (UN, 2004). The EU Level Consultation on Migration Health (‘Better Health for All’), organised within the Assisting Migrants and Communities (AMAC) project (IOM, 2009a) included among its recommendations that: – Access to and quality of health care, as well as health literacy, needs to be improved for all the EU population including migrants; – Migrant-friendly health systems need to be put in place to reduce social and health care and to respect good public health practice in a diverse EU society; such systems should comprise the use of interpreting, mediation and training for all health professionals; – In maternal, child and adolescent health, coherent and sensitive policy frameworks should be developed in order to provide care to migrant mothers and their children and outreach interventions put in place. 4. Rights and legal obligations regarding domestic workers in Europe and globally The strategies and policies discussed here tackle the fundamental vulnerability of female domestic workers and in this way reduce health risks, although not always addressing health directly. Some of the strategies and policies are European, others (like UN conventions) are global; whether they have binding force depends on whether nations ratify them. The 99th International Labour Conference (2010) in Geneva (ILO, 2010) stressed the necessity of occupational safety and health for domestic workers. It is essential for all European countries to take into consideration all international strategies and policies in order to develop national approaches to tackling health inequalities and protecting domestic workers’ rights. Relevant international declarations and conventions are listed below.

Health issues among female migrant domestic workers

4.1 Universal Declaration of Human Rights According to article 25 of the Universal Declaration of Human Rights (UN, 1948), Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.

4.2 International Convention on the Elimination of All Forms of Racial Discrimination (1969) According to Article 5 of the International Convention on the Elimination of All forms of Racial Discrimination (UN, 1969), States Parties undertake to prohibit and to eliminate racial discrimination in all its forms and to guarantee the right of everyone, without distinction as to race, colour, or national or ethnic origin, to equality before the law, notably in the enjoyment of the following rights: ……. (iv) The right to public health, medical care, social security and social services.

4.3 International Covenant on Economic, Social and Cultural Rights (CESCR) (1976) Articles 7 and 10 of the CESCR (UN, 1976) acknowledge the right to equal working conditions, the right to form trade unions and join them, and the right to social security and maternity leave. The Committee on Economic Social and Cultural Rights (CESCR), the body of independent experts that monitors implementation of the CESCR by its States Parties, in its comments regarding undocumented female migrant domestic workers in Belgium and France noted the discrimination due to working conditions and difficult access to healthcare (UN, 2007, 2008a). Further, it has reminded the States Parties that “all persons, irrespective of their nationality, residency or immigration status, are entitled to primary and emergency medical care” (UN 2008b: para. 37). 4.4 Convention Concerning Decent Work for Domestic Workers (ILO) Article 13 (ILO, 2011: article 13) states that: Every domestic worker has the right to a safe and healthy working environment. Each member shall take, in accordance with national laws, regulations and practice, effective measures, with due regard for the specific characteristics of domestic work, to ensure the occupational safety and health of domestic workers.

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4.5 Parliamentary Assembly of the Council of Europe: Resolution 1811 (2011) Protecting migrant women in the Labour market Article 7 of this Resolution (CoE, 2011) “recognises the need for host countries to develop and implement measures to specifically address the protection of migrant women in the labour market, irrespective of their occupation or immigration status.” Article 8.5 calls on member states of the Council of Europe to: provide migrant domestic workers with labour rights and protection, especially as regards clearly defined work tasks, daily hours of work and rest periods, wages (at least the minimum wage or equivalent) and method of payment, standards of night work and overtime, leave periods, standards of termination of employment and social security protection.

Article 8.6 calls on them to: protect migrant domestic workers against all forms of abuse and harassment, including physical, verbal, sexual and psychological abuse and harassment, and guarantee their right to seek legal remedies against employers that mistreat them.

In addition to these formal declarations, an EU Fundamental Rights Agency report on ‘Migrants in an irregular situation employed in domestic work’, based on a research in 10 Member States (FRA, 2011), underlined five fundamental rights areas and made suggestions for protecting these rights: a. Fair working conditions (e.g. fair pay, sick leave etc.) that should be guaranteed by a clear legal framework covering both documented and undocumented domestic workers; b. Compensation for unjustified dismissal, suggesting compensation as for other domestic workers; c. Freedom of association, the right to join a trade union; d. Access to redress mechanisms, mechanisms should be developed in order to combat any obstacles for accessing justice system. Therefore, trade unions, equality bodies and NGO’s should be more active in promoting the legal rights of undocumented migrants e. Issues relating to family life, support should be provided for mothers of migrants who become pregnant Other recommendations were contained in a background paper for an e-discussion organised by the EC-UN Joint Migration and Development Initiative (JMDI) in New York during 2011 (JMDI, 2011):

Health issues among female migrant domestic workers

Equitable access to healthcare should be provided to women domestic workers who often face increased psychosocial and occupational health risks associated with their position [...] It is also imperative to prohibit and punish employers and employment agencies involved in trafficking in persons, smuggling, exploitation and abuse, including physical, psychological, sexual and financial abuse. […] Domestic workers must be empowered to access essential social protections throughout the migration cycle, including pre-departure and on return. These protections include (but are not limited to): providing gender-sensitive pre-departure information services and training for prospective migrants; enabling workers and their families to be aware of and to actively access social services, especially health and education services; actively promoting migrants’ social and cultural integration into host societies (and home societies on return) through integration programmes and public information campaigns; creating safe, accessible and lowcost means to remit wages; improving migrant workers’ financial literacy; and creating sustainable alternatives to migration through enterprise development including micro-credit.

5. The case of Cyprus Female migrant workers entering the Republic of Cyprus with the status of ‘domestic worker’ are required to work for a specific employer whose application has been approved by the Civil Register and Migration Department of the Ministry of Interior for a maximum of four years. In Cyprus, according to the Ministry of Labour and Social Insurance, there are approximately 30,000 domestic workers (Christodoulou et al., 2011). However, there may be more because statistical data do not take into account numbers of female migrant domestic workers employed irregularly, on the ‘shadow economy’, outside of any legislative framework, and also give no clear picture of what is happening in the area of Cyprus that is under Turkish occupation. Further, among the 66,000 third country nationals residing legally in Cyprus, a large number are undocumented (HUMA, 2009). At least 40% of migrants residing in Cyprus are women, a percentage consistent with the worldwide phenomenon of the feminization of migration, according to which approximately 50% of all migrants throughout the world are women (MIGS, 2006). Third country nationals are employed in Cyprus only in cases where an employer or a specific labour sector cannot cover their needs with the national or EU labour force or with asylum seekers already residing in the Republic (MIGS, 2006).

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A standard employment contract is prepared by the Civil Registry and Migration Department of the Ministry of Interior in consultation with the Ministry of Labour. The contract is stamped by the Labour Department of the Ministry of Labour and Social Insurance. Thus, domestic workers and employers have rights and obligations. These contracts create a relationship of dependency between employer and employee. Furthermore, no state mechanism can ensure that working and living conditions of female domestic workers are in compliance with their contracts since they are considered as living in the ‘private sphere’ of their employers, to which the authorities have no access. According to the contract, the migrant is expected to work seven hours a day, six days a week). However, in practice this is not often adhered to by the employers as the domestic worker lives in the house. Further, some employers require from the domestic workers to work on a Sunday. One could argue whether this act violates the right of day leave. Salaries are about 326 euro’s per month and this does not reflect the current cost of living in Cyprus. The majority of the employers continue to pay this amount, without granting the annual increase of 5% provided in the contract. In Cyprus, migration policies are not gender-sensitive (MIGS, 2008). What is the health situation of migrant domestic workers in Cyprus? Within the employment contract (and in contrast with the right to sick leave for Cypriot employees who can provide the employer a medical certificate justifying absence from work on a particular day), in the case of a migrant domestic worker the employer has the right to terminate the services of the employee and arrange for their repatriation if they are absent from work due to illness for more than one month, when the reason for absence is not covered by the Industrial Accidents Act. This is discriminatory, considering that the domestic worker will be under psychological pressure not to claim their rights – even if they are seriously ill or pregnant – for fear of losing their job and being repatriated (MIGS, 2006). There are no legal provisions entitling undocumented migrants to access healthcare in Cyprus; ministerial circulars state only that any person can access emergency care free of charge. Undocumented migrants are also allowed to have diagnosis and HIV treatment, as well as treatment for other infectious diseases and some chronic illnesses as well as immunizations. However, if they are admitted to hospital they are asked to pay full hospital costs. Nevertheless, a parallel healthcare system has developed for migrants with private insurance plans for basic healthcare. Female migrant domestic workers have to contribute 50% of the cost of their private medical insurance, which does not cover gynaecological and delivery care. As a result, the health of female migrant domestic workers is particularly at risk and access to antenatal and postnatal care is limited (HUMA, 2009).

Health issues among female migrant domestic workers

A study in Cyprus conducted by Theodorou et al. (2010) using a qualitative method with 13 face-to-face interviews with female migrant domestic workers coming from Philippines and Sri Lanka, explored domestic workers’ experience of access to and utilization of health care services (both public and private) in Cyprus. This study showed that the employer had the role of ‘gatekeeper’: some of the women were facing lack of autonomy and were dependent on their employer. Absence of social integration, lack of information on health care services and entitlements, lack of participation in the clinical interaction, were all associated with issues of infantilisation and commodification of female migrant domestic workers within Cypriot society. The study stressed the necessity of empowering female migrant domestic workers in order to eliminate health inequalities and discrimination, and of educating both migrant women and employers on health issues (Theodorou et al., 2010). Another study in Cyprus (Kouta et al., 2011) exploring sexual and reproductive needs among a sample of 40 female migrant domestic workers (30 from Philippines and 10 from Sri Lanka), concluded with the following recommendations: – the establishment of prevention and education/information campaigns for sexually transmitted diseases (STDs) and HIV/AIDS, targeting female migrant domestic workers and the surrounding community; – provision of education and training of migrant workers in sexual and reproductive health, and – the provision of free health care services at lower cost for medical tests (Kouta et al., 2011). Further, according to the Shadow Report for the Convention on Elimination of All Forms of Discrimination Against Women (CEDAW) (MIGS, 2006), in Cyprus – as elsewhere – these women may become victims of physical and psychological abuse, sexual harassment and/or rape. For instance, a pregnant domestic worker was told by her employers to have an abortion within 24 hours or face deportation. It is not unusual for these workers to be deported if they complain to the police about their employers (Panayiotopoulos, 2005). 6. Access to health care in EU countries 6.1 Regulations covering female migrant domestic workers Migrant domestic workers in the United Kingdom, despite having the right to free healthcare for the duration of their employment, can still be denied the possibility to register with their local General Practitioner because of the confusion that exists about the conditions governing free healthcare for people coming from outside the United Kingdom. Moreover, female migrant domestic workers may be unable to provide the necessary documents to enable them to register with health services – in particular because employers may keep their passports (Brown, 2006).

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A study of maternity leave standards of 74 countries cited in ILO (2010), found that in industrialised countries (e.g. Austria, Belgium, Spain, Denmark, Finland, France, Germany, Ireland, Netherlands, Portugal, Switzerland and the United Kingdom), female migrant domestic workers with a residence permit are covered by general maternity leave legislation or by separate, equivalent provisions. 6.2 Regulations covering undocumented migrants Cuadra (2011) conducted a study which set out to characterise policies regarding the right of access to health care for undocumented migrants in the 27 Member States of the EU and to examine the extent to which these entitlements are congruent with human rights standards. Data were obtained from a questionnaire sent to relevant authorities, as well as articles, reports and other ‘grey literature’. Member States were grouped into three clusters, based on the levels of entitlement to health care: a. Less than minimum rights: Finland, Ireland, Sweden, Austria, Bulgaria, Czech Republic, Latvia, Luxembourg, Romania and Malta (10 countries). These countries offer the least rights to undocumented migrants (not even free emergency care). b. Minimum rights: Cyprus, Denmark, UK, Germany, Hungary, Estonia, Lithuania, Poland, Slovak Republic, Slovenia, Belgium and Greece (12 countries). In the case of Cyprus, for example, undocumented migrants have the right to access emergency care free of charge and may access primary and secondary care in return for payment of the full cost. According to Kovacheva and Vogel (2009) the number of undocumented migrants in Cyprus is between 10 and 15 thousand. c. More than minimum rights: Italy, Portugal, Spain, the Netherlands and France (5 countries). These countries offer almost the same coverage to undocumented migrants as to other residents, though migrant who are able to pay for the services themselves will usually be required to do so. A project coordinated by Queen Mary University of London on ‘Health Services for Immigrants in Europe’ (EUGATE) 1 reviewed existing legislation and policies in 16 EU countries: Austria, Belgium, Denmark, Finland, France, Germany, Greece, Hungary, Italy, Lithuania, Netherlands, Poland, Portugal, Spain, Sweden and the United Kingdom. The researchers found, on the basis of data collected in 2009 from key persons and health professionals, that regular migrants (e.g. labour migrants including domestic workers) generally have the same rights as nationals. In the case 1 http://www.eugate.org.uk/

Health issues among female migrant domestic workers

of insurance-based health systems, access to care tends to depend on employment, whereas access to National Health Service systems mainly depends on residency. Social and welfare systems ensure equality of rights and access to care for regular migrants. In the case of undocumented migrants, however (including female migrant domestic workers), countries differ on free access to primary care, specialised care, maternal care, medical care for infectious/communicable diseases, treatment for HIV/AIDS etc. Further, the reporting of this category of migrants to the authorities is mandatory in some of the participating countries. These results largely correspond to those found by Cuadra (2011) reported above. Further, interviews were conducted with practitioners and administrator managers in 240 different services (primary care, mental health care, accident and emergency department). The problems faced by health professionals were: a) language barriers, b) difficulties in arranging care for immigrants without health care coverage, c) lack of familiarity with the health care system, d) cultural differences in the perception of illness, pain and treatment, e) negative attitudes and discrimination from both staff and patients and f) lack of access to medical history. Recommendations and best practices identified in the Eugate project include: a) interpreting services, b) training of healthcare staff in order to be culturally competent, c) provision of education programmes and information materials for immigrants as well as d) provision of sufficient resources in general. Research carried out for the IOM on health care for undocumented migrants in the EU reported results largely in accordance with those described above. It was also pointed out that even though undocumented migrants in may have access to health care in theory, many may not take advantage of their rights. In Greece, undocumented migrants have extremely poor access to healthcare (IOM, 2009b). 7. Conclusions Approximately half of all migrants throughout the world are women. Existing literature has drawn attention to the lack of regulatory frameworks, which leaves these women unprotected and vulnerable to discrimination and social isolation that strongly affects their physical and mental health (ILO, 2010). Some of the factors described in the literature that create health vulnerabilities for foreign domestic workers are: – work conditions (extremely working hours, unlimited tasks, few off days, poor nutrition etc.); – discrimination due to the fact of being women and migrants; – uneven access to health care and barriers to access arising from lack of information, language barriers, and dependence on employers who do not shoul-

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der their responsibilities. In the case of undocumented domestic workers, avoidance of regular health services due to fear of deportation is reported (Bollini et. al, 2007; HUMA network, 2009; Sharma and Cottrell, 2010). As far as their sexual and reproductive health is concerned, some EU countries do not recognise the psychosocial and sexual needs of female domestic workers and provide little or no access to preventive measures and appropriate contraception, rendering these women vulnerable to sexually transmitted diseases. Further, in many countries abortion is illegal and the threat of deportation in case of pregnancy leaves them with no other option than to resort to unsafe abortions; this creates more sexual and reproductive health problems. In Cyprus, there is a large influx of migrant domestic workers and the current law places them under the control of their employer. Local studies in Cyprus have stressed the need to educate both female migrant domestic workers and their employers on health issues and rights (Theodorou et al., 2010), as well as the provision of free medical and health services with lower fees for health and medical tests (Kouta et al., 2011). 8. Recommendations The following recommendations are made in order to combat health inequalities on a national and international level: – The use of existing international and regional frameworks as guidelines for improving national legislation and policies related to female migrant domestic workers. – Countries of destination should clarify within the employers’ contracts the coverage of all kind of illness, care during pregnancy and childbirth, and sick leave. Female migrant domestic workers should be protected from deportation due to pregnancy. – There is a need for better access to prenatal care and routine screening during pregnancy for undocumented female migrant domestic workers. – Sender countries should provide intending migrants with information about the country of destination, the legislation which will apply to them, and the existence of migrant associations. – There is a need to empower female migrant domestic workers about their rights and responsibilities and for more studies on health inequalities to identify their health needs. – Networks and migrant associations should be formed in order to help female migrant domestic workers’ integration within the country of destination and protect their rights.

Health issues among female migrant domestic workers

– Nurses and other healthcare personnel have an important role to play in advocating for female migrant domestic workers and should be educated for providing culturally appropriate and gender-sensitive health services. References Adanu, R.M.K. & Johnson., T. (2009). Migration and women’s health. International Journal of Gynecology and Obstetrics, 106(2), 179-181. http://www.ijgo.org/article/ S0020-7292(09)00157-X/fulltext Bollini, P., Stotzer, U., & Wanner, P. (2007). Pregnancy outcomes and migration in Switzerland: results from a Focus Group study. International Journal of Public Health, 52(2), 78-86. Brown, C.S. (2006). Lack of clarity to entitlement leaves migrant domestic workers excluded from primary healthcare. British Medical Journal, 333, 259.1. http://www. bmj.com/content/333/7561/259.1?tab=responses CARAM Asia (2005). Domestic Workers and Health, Malaysia: Kuala Lumpur. Christodoulou, C., Diamantopoulou, A., Dourida, V., Michalakieli, A. & Frangouli, P.M. (2011). Trafficking for Labour in Cyprus, Brussels: Churches’ Commission for Migrants in Europe (CCME). http://bit.ly/y8f2bJ CFMW (2005). MDW Visible and Making a Difference, Preliminary report on Migrant Domestic Workers (MDWs) in the Netherlands. Amsterdam: Commission for Filipino Migrant Workers. Cuadra, C.B. (2011). Right of access to health care for undocumented migrants in EU: a comparative study of national policies. European Journal of Public Health, doi: 10.1093/eurpub/ckr049. First published online: June 9, 2011 ETUC (2005). Out of the Shadows: Organising Domestic Workers. Towards a protective regulatory framework for domestic work, Brussels: European Trades Union Federation. http://www.etuc.org/IMG/pdf/Rapport_dosmestic_workers.pdf Eurostat (2008). The life of women and men in Europe. A statistical portrait. Luxembourg: European Communities, pp. 57-61. http://bit.ly/xO3hs5 Flander, O.A., (2011). Immigration to EU Member States down by 6% and emigration up by 13% in 2008. Luxembourg: Eurostat Statistics in Focus, 1/2011. http://bit.ly/wWPz5o FRA (2011). Migrants in an irregular situation employed in domestic work: Fundamental rights challenges for the European Union and its Member States. Vienna: EU Fundamental Rights Agency. http://bit.ly/AfYxRr HUMA (2009). Access to Healthcare and Living Conditions of Asylum Seekers and Undocumented Migrants in Cyprus, Malta, Poland and Romania. Paris: Health for Undocumented Migrants and Asylum Seekers network. http://bit.ly/xrPYhw ILO (2010). International Labour Conference, 99th Session, 2010. Report on Decent work for domestic workers, Geneva: International Labour Organization. http://bit.ly/ w20chF

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ILO (2011). Text of the Convention Concerning Decent Work for Domestic Workers, Geneva: International Labour Organization. http://bit.ly/z1b5no Ingleby, D. (2011). Briefing paper on irregular migrants in the WHO European region. Internal report for the Task Force on Social Exclusion, Disadvantage, Vulnerability and Health of the WHO European Review of Social Determinants and the Health Divide. Copenhagen: WHO European Office. IOM (2009a). Migrant Health: Better Health for All in Europe. Brussels: International Organization for Migration. http://bit.ly/A9D6Rp IOM (2009b). Research on Health care for Undocumented Migrants in the EU: Concepts and Cases, Brussels: International Organization for Migration. http://bit.ly/ AxY62w JMDI (2011). Background Paper for e-discussion on “Domestic Workers Count Too: Visibilising and Protecting Women Migrant Domestic Workers through Legal and Social Protections” (8-30 March 2011). New York: EC-UN Joint Migration and Development Initiative. http://bit.ly/yEw5QR Kontos, M. (2011). Between Integration and Exclusion: Migrant Women in European Labor Markets, Washington DC: Migration Policy Institute. http://www.migrationinformation.org/Feature/display.cfm?ID=832 Kouta, C., Kaite, C. & Kalavana Th. (2011). Migrant domestic workers in Cyprus: An evaluation of their sexual and reproductive health needs. A pilot study. Hellenic Journal of Nursing Sciences, 4(2), 19-31. Kovacheva, V. & Vogel, D. (2009). The size of irregular foreign resident population in the European Union in 2002, 2005 and 2008: aggregated estimates. Hamburg: Hamburg Institute of International Economics. http://bit.ly/zXWZqY Lindio-McGovern, L. (2003). Labor Export in the Context of Globalization. The Experience of Filipino Domestic Workers in Rome. International Sociology, 18(3), 513-534. MIGS (2006). Convention on Elimination of all forms of Discrimination Against Women (CEDAW), Cyprus Shadow report. Nicosia: Mediterranean Institute of Gender Studies. MIGS (2008). Integration of Female Migrant Domestic Workers. Nicosia: Mediterranean Institute of Gender Studies. http://bit.ly/xbu6KE OECD (2003). Trends in International Migration. Paris: Organization for Economic Cooperation and Development. Oso-Casa, L. and Garson, J.-P. (2005). The feminization of international migration, Paris: OECD. CoE (2011). Parliamentary Assembly of the Council of Europe, 2011. Resolution 1811/2011. Protecting migrant women in the labour market. Strasbourg: Council of Europe. http://bit.ly/yhGi0v Panayiotopoulos, P. (2005). The globalization of care: Filipina domestic workers and the elderly in Cyprus. Capital and Class, 86(35), 99. Sharma, A. and Cottrell, E. (2010). Migration and Health. Australian Medical Journal, 1(1), 3-8.

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Theodorou, M.H., Pithara, C., Konstantinou, A., and Kantaris, M., 2010. Utilization and access to private and public health care services by domestic workers in Cyprus: Mapping inequalities and discrimination Paper presented during the Gender Equality and Women’s Empowerment Conference, Nicosia Cyprus; 23rd October 2010. http://bit.ly/zoyM1K UN (1948). General Assembly of the United Nations, 1948. The Universal Declaration of Human Rights. New York: United Nations. http://www.un.org/en/documents/udhr UN (1969). International Convention on the Elimination of All forms of Racial Discrimination. New York: United Nations. http://www2.ohchr.org/english/law/pdf/cerd. pdf UN (1976). International Covenant on Economic, Social and Cultural Rights. New York: United Nations. http://www2.ohchr.org/english/law/cescr.htm UN (2004). Specific Groups and Individuals: Migrant Workers. Report of the Special Rapporteur Ms. Gabriela Rodríguez Pizarro, Submitted Pursuant to Commission on Human Rights Resolution 2003/46 (E/CN.4/2004/76). New York: United Nations. http://bit.ly/ABAhrI UN (2007). Consideration of Reports Submitted by States Parties Under Articles 16 and 17 of the Covenant: Concluding Observations of the Committee on Economic, Social and Cultural Rights. Belgium (E/C.12/BEL/CO/3) New York: United Nations (Committee on Economic, Social and Cultural Rights). http://www2.ohchr.org/english/ bodies/cescr/docs/cescr39/E.C.12.BEL.CO.3.pdf UN (2008a). Consideration of Reports Submitted by States Parties Under Articles 16 and 17 of the Covenant: Concluding Observations of the Committee on Economic, Social and Cultural Rights. France (E/C.12/FRA/CO/3) Belgium. New York: United Nations (Committee on Economic, Social and Cultural Rights). http://www2.ohchr. org/english/bodies/cescr/docs/co/E.C.12.FRA.CO.3.doc UN (2008b). Convention on the Elimination of All forms of Discrimination against Women (CEDAW), General recommendation No. 26 on women migrant workers. New York: United Nations. http://www2.ohchr.org/english/bodies/cedaw/docs/ GR_26_on_women_migrant_workers_en.pdf UN DESA (2009). Trends in International Migrant Stock: The 2008 Revision, New York: United Nations Department of Economic and Social Affairs, Population Division. UNFPA (2006). State of World population 2006. Chapter 3: Women and International Migration, New York: United Nations Population Fund. http://www.unfpa.org/ swp/2006/pdf/en_sowp06.pdf Veenstra, G. (2011). Race, gender, class, and sexual orientation: intersecting axes of inequality and self-rated health in Canada. International Journal for Equity in Health, 10, 3. http://www.equityhealthj.com/content/10/1/3 WHO (1946). Constitution of the World Health Organization. Geneva: World Health Organization. http://apps.who.int/gb/bd/PDF/bd47/EN/constitution-en.pdf

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Chapter 10

The health of new labour migrants: Polish migrants in Norway

Elżbieta Czapka

1. Introduction The enlargements of the European Union (EU) in 2004 with Cyprus, Czech Republic, Estonia, Hungary, Latvia, Lithuania, Malta, Poland, Slovakia and Slovenia and 2007 (Bulgaria, Romania) led to the largest population movements in Europe since World War II. Favell (2008) remarked that the citizens of West European countries seemed content with the fact that it is migrants from new member states who do the so-called 3D jobs (dirty, dangerous and dull). Most of these migrants are young people who migrate temporarily and are close to Western societies in terms of culture. Additionally, they tend to have university diplomas. Poles in Great Britain, Ireland and Norway constitute the largest group of postaccession migrants. An estimated 2 million people emigrated from Poland after it joined the EU. As Wiśniewski & Duszczyk (2007) pointed out, it is difficult to estimate the number of post-accession migrants due to the fact that about 650,000 Poles found employment in West European countries each year before Poland joined the EU. Economic considerations appeared to be the most significant ‘push’ factor, while the opening of certain West European job markets was the major ‘pull’ factor. Poles treated migration as a strategy for dealing with unemployment. It was not a trip to the unknown, though, as many had already worked illegally in West European job markets before 2004. This facilitated the establishment of migration networks. The main aim of this article is to examine the health aspects of such ‘new labour migration’, using Polish immigrants in Norway as an example. In the first part the new trends in labour migration are discussed. In the second part the results of research conducted in Oslo among Polish migrants are analysed. The data presented in the article derive from a research report entitled The Health of Polish Labour Immigrants in Norway (Czapka, 2010). This research is part of the author’s post-

The health of new labour migrants: Polish migrants in Norway

doctoral project funded by the Norwegian Centre for Minority Health Research (NAKMI), Oslo. 2. The characteristics of new labour migration in Europe The economic John Kenneth Galbraith wrote in 1979 that: Migration is the oldest action against poverty. It selects those who most want help. It is good for the country to which they go; it helps break the equilibrium of poverty in the country from which they come. What is the perversity in the human soul that causes people to resist so obvious a good?1

Although international migration may be an old phenomenon, its character is continually changing. According to Papastergiadis (2004), migration has never been so complex and, at the same time, as common as it is now. People become more mobile due to the fact that the social world is undergoing a process of compression (see below). Furthermore, as Stalker (2000) pointed out, new budget airlines appear and give millions of people an opportunity to travel across large distances. However, as the development of transportation networks makes migration easier, people no longer migrate permanently but tend towards temporary or shuttle migration (Zaiceva & Zimmermann, 2008). According to Kawczyńska-Butrym (2009), there are generally speaking two types of labour migrant: ‘migrants for survival’ (who go abroad in order to cater for their basic needs such as food, clothes, house refurbishment or debts) and ‘mobile migrants’ who want to improve their living conditions, buy a new car, obtain some money for investment. Taken together, these two categories constitute the contemporary flows of labour migrants in Europe. As the flows are quite diverse and complex, host countries are not always prepared to meet the needs of new labour migrants, who – among other things – pose a challenge to health care systems. Moreover, there is no reliable data on current labour migration. For many reasons, it is extremely difficult to monitor the number of labour migrants in particular countries. First, different definitions of emigrants and immigrants are applied in different countries. Second, different methods are used to collect data on migratory inflows and outflows. Finally, a significant number of migrants remain unregistered and, according to Okólski (2004:203), “there are no bases, apart from the intuition and bravery of some experts, for assessing the dynamics of the illegal migrants”. Moreover, as increasing numbers of migrants remain undocumented, there are concerns among researchers and social practitioners that various institutions (such as labour 1 Galbraith (1979:7)

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and health care institutions) may be unable to provide for the social protection and security of globally mobile workforces. At present, much attention is paid by researchers to ‘liquid’ migration characterised by “the lack of geographic, temporal and functional determinism that was attributed to earlier migrations” (Grabowska-Lusińska, Okólski, 2009:31). A migrant not only lives between two (or more) countries, but also tries to maintain bonds. It is not possible to predict where such migrants will settle, if anywhere. Because of the diffusion of cultural patterns, the social world shrinks. There is a homogenisation of lifestyles that helps migrants to become less dependent on their countries of origin and families than in the past. The process is referred to as McDonaldization, westernization or hybridization. It seems that a migrant with a good command of English and equipped with a credit card should not be afraid of anything abroad. The term ‘liquid migration’ recalls Bauman’s ‘fluid reality’ and, like the latter term, it evokes certain reservations, as it is not defined precisely enough. Even though as far as mobility is concerned, migrating is much easier now than ever before, migrants keep reporting the well-known problems of a social, cultural, economic and emotional nature. It is these factors that may eventually push people back from the country of immigration. The research conducted by KawczyńskaButrym and her team (2010) on re-migrating women shows that these women are satisfied with their decision after they have returned home. The authors point to both the factors that push migrants out of the country of immigration and the factors that attract them to their homeland. In case of female migrants, emotion-related factors (especially homesickness and being tired of living far from their home country), family and health considerations were the most significant factors. Even though economic factors were important motivators to return home, they were not the most essential ones. Most research on Polish labour migration points to the phenomenon of homesickness. Despite the availability of rapid travel, labour migrants do not treat migration as an ordinary ‘trip to work’. 3. Polish labour migrants in Norway Norway was one the countries that became a popular destination for Polish labour migrants after their country’s accession to the EU. According to Norwegian population statistics, Polish citizens made up the largest group of immigrants (52,125) in 2010. Sixty-six percent of all Polish immigrants are men. It is not possible to present figures that reflect the actual number of Poles in Norway, because many migrants are not registered. Unregistered migrants do not pay taxes and have no rights to health care services. Considering health issues, Polish labour migrants in Norway constitute a particularly vulnerable group because many of them work in construc-

The health of new labour migrants: Polish migrants in Norway

tion sites and are thus exposed to the risk of work-related accidents. This chapter presents the results of research conducted among Polish migrants in Oslo. It focuses on the following research questions: – Do Polish migrants experience changes in their health status after arrival in Norway? – Do they notice any changes in their lifestyle habits, sex life, physical activity, drinking and smoking between Norway and Poland? – Do they use health care services in Norway or in Poland? Do they experience any obstacles in accessing health care services abroad? The research comprised both quantitative (survey) and qualitative (semi-structured individual interviews, focus groups) elements. A sample of 107 migrants filled in the questionnaire and 32 migrants were interviewed. Due to the fact that a snowball method was used, the research sample was not representative, so the findings cannot be generalised to the whole population of Polish work migrants in Norway. Nevertheless, the sample was diverse in terms of age, sex, place of living, place of employment in Norway and the time spent in Norway. Thus, the most important parameters of the population studied were taken into consideration. 3.1 Self-evaluation of migrants’ health In the case of labour migration, it is generally assumed that people who go abroad are healthy. They must deal with unfamiliar conditions and adapt to do a new, frequently demanding physical job. The research conducted by Kawczynska-Butrym (2010) among returning migrants show that out of the fourteen aspects of their lives mentioned in the questionnaire, their health was the only one that deteriorated. Most Polish migrants in Oslo seemed to be satisfied with their physical, mental and social health condition; they assessed it as ‘very good’ (30%) or ‘good’ (49%). Fifty-four percent of respondents reported no changes in their health during the migration. Twenty percent noticed some improvement in their health, and 26% declared that their health had deteriorated. Therefore, we cannot conclude that there was a tendency for health to deteriorate. However, the migrants reported specific changes in their health, of which examples are presented in Table 1. Based on these results, two categories of migrants can be distinguished: firstly, migrants who are satisfied with their living conditions and work in Norway and feel happy about the possibility of securing their families’ well-being; and secondly, migrants who experience a lot of difficulty with hard work and do not feel well.

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Table 1. Changes in state of health as reported by the migrants Source: Czapka (2010:17). Health components

Physical

Mental

Social

Health improvement

Health Deterioration

Generally I am feeling better, I have better blood circulation, I spend more time outdoors (in the fresh air), I am not sick, I feel less pain in my back, I like the Norwegian climate, I have no problems with gastritis any more.

Accidents at work, permanent infections, diabetes, problems with my spine!!!, a pain in the legs, I am not fit enough, fatigue, tiredness, lack of energy, digestion problems, genital system problems, skin and nails problems.

My mental health has improved because now I know that my family has everything they need except for the father and the husband, I am not stressed about providing for my family, I am in a better mood, experiencing lack of stress, no worries, a kind of stability, I am happy in my private life.

Stress!!!, family longing, working abroad demands more concentration and effort, bad mental condition, the weather affects me.

Nice work, new friends and new experiences, I work less than in Poland, the working conditions are better, I earn 8 times more than in Poland

Working in a specific environment (in the office), lack of friends

The health problems mentioned most frequently as being experienced more often in Norway than in Poland were tiredness (reported by 25% of the respondents) and backache (reported by 16%). Pain in the back and muscles can be a consequence of hard physical work. A participant in a focus group, when asked about health problems he suffered, said: “Generally speaking I don’t feel any problems, except for one. When I wake up in the morning and I don’t feel any pain, I’m afraid that I’m dead. But if each and every part of my body hurts, it means that everything is fine”. Sleep disorders were also reported quite frequently (insomnia in 10%, excessive sleepiness in 14% of respondents). The research by Kawczyńska-Butrym (2008) showed that returning migrants suffered from psychosomatic disorders (fatigue, irritation, insomnia) and muscle pain more often abroad than in Poland (Table 2). Most respondents reported good or very good mental health in both Poland (70%) and Norway (63%). They were asked to say if and how often they felt different emotional states; Table 3 shows their answers.

The health of new labour migrants: Polish migrants in Norway

Table 2. Occurrence of disorders in different phases of working abroad (%) Source: Kawczyńska-Butrym (2008:188) Type of disorder

Before migration

During

After

Fatigue

9.1

47.3

5.5

Irritation

14.5

34.5

16.4

Annoyance

18.2

40.0

10.9

9.1

18.2

7.3

5.5

30.9

5.5

10.9

32.7

14.5

Psychosomatic disorder

Sleeplessness Painful disorders Pains in the bones and muscles Pans in the back Stomach-aches

3.6

7.3

7.3

Headaches

9.1

9.1

3.6

Chest pains

3.6

7.3

3.6

Table 3. Emotional states experienced by Polish migrants during their stay in Norway (%) Source: Czapka (2010:19)

Yes Emotions Anger

Only at the beginning

Seldom

Frequently

14

34

12

No

Difficult to say

34

6

Irritation

5

38

15

32

8

Nervousness

6

46

14

22

12

Helplessness

11

32

8

37

12

Indifference

4

26

11

46

13

Low self-esteem

9

21

10

52

8

5

24

18

39

14

13

17

29

32

9

Mood swings Overwhelming homesickness Depression

6

17

7

61

9

Happiness

4

23

31

24

18

Nearly a third of the migrants experienced overwhelming homesickness, which was also found in other studies on migrants and returning migrants. Family is the most important value for Poles (Czapka, 2010) and the most frequently mentioned support group. One respondent said:

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Every 4-5 weeks we go home. It is guaranteed in our job contract. This is a certain mental comfort that I know that in 4 weeks time I’m going to see my family. No problem. You can jump from the bottom mentally. I sit here and hear that people spend 5-6 months here. I wonder how it is possibly that they don’t go mad.

Even respondents who evaluated their physical and mental health as ‘good’ or ‘very good’ indicated a lot of problems concerning social functioning in Norway. An individual’s participation in social relations is an important component of their health. A particularly important sphere of social activities is work, as migrants spend much of the day at the workplace. The job that they do is frequently not in keeping with their education and qualifications, which may evoke a feeling of social degradation: In Poland I was a carer in a boarding house. I lived there. I had my position there. A suddenly I end up living in a basement. Just because I am a Polish person who doesn’t know Norwegian I must clean Norwegian houses. This made me lose my sense of value.

Social isolation is a serious problem for Polish migrants in Norway. Most migrants (80%) reported that they spend their free time only with Poles. Moreover, they feel isolated. More than 30% of the respondents asked to evaluate how they feel in Norway on a scale (1 –= absolutely isolated, 10 = very engaged in social life) gave answers ranging from 1 to 4. The reasons for isolation that were most frequently mentioned were: language barrier (39%), culture barrier (12%), lack of own engagement (10%). Norwegians’ reluctance to engage in closer relations with Polish people was also emphasised: They seem nice and keep smiling but at the same time they keep us at a distance. They make you feel that you are worse because you are Polish. If you really want to know, I feel that they consider themselves superior. But nobody will admit that.

Twenty-two percent of the respondents stated that they experienced discrimination from Norwegians. Interestingly, 20% of respondents claimed that they also experienced unfair treatment from other Polish migrants. At work when they try to show off and prove that they are better and want to manage things; discrimination at work because I do a painter’s job; they think they are superior just by the fact that they work here but, in fact, they have been and still remain brutes, it is terrible to have a Polish boss abroad.

The health of new labour migrants: Polish migrants in Norway

The interviewees evaluated the job they do in diverse ways. One-third of the respondents claimed that their work had an unfavourable impact on their health (Table 4). Table 4. Evaluation of the work done in Norway, as reported by Polish migrants (%) Source: Czapka (2010:21)

Evaluation of work

Fully

Partly

Not at all

Below expectations/possibilities

No reply

Financially satisfying

27

56

2

9

6

Relevant to my qualifications

33

22

31

5

9

Health-friendly

24

30

33

4

9

Providing me with a sense of security

29

45

12

5

9

Providing me with a sense of respect

37

33

16

4

10

Providing me with promotion prospects on return to Poland.

18

16

47

6

13

Providing me with promotion prospects here in Norway

20

27

38

4

11

Construction workers in particular complained about health problems, especially related to back pain: I’m going to tell you what I did to my back last time. First, I worked here for a long time, a year, and it was light work. Sometimes it was harder, but not as hard as back in Poland. Then I got a harder job: carrying heavy loads day by day, 10 hours. You know. I somehow did not shy away from the job. If I had prevented it, I wouldn’t have fallen. My leg hurt. Maybe overwork. It turned out that my legs hurt because of my back. The pain was so great that I couldn’t walk. Then I had a terrible pain in my back but there were just a few days left to Christmas. I said to myself: you’re gonna make it. I went to Poland, I visited the doctor and I couldn’t move at all.

One of the migrants attempted to explain why Polish people work so much: “We have to reach a certain status, minimal security, feel relaxed to some extent” Polish migrants reported being quite satisfied with their wages, but felt that their current job did not improve their chances in the job market, either in Norway or in Poland. This is not surprising, considering the fact that migrants from new EU

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member states often do the jobs that the citizens of West European countries do not want to do. 3.2 Migrants’ access to health care services In most EU and EEA (European Economic Area) countries, migrants with a work and residence permit are entitled to receive the same medical treatment as nationals. Nevertheless, the access of Polish migrants to the Norwegian health care system appears to be rather problematic. Mladovsky (2007) lists three groups of factors that explain unequal access of migrants to the health care systems of host countries. First, requirements for obtaining a sufficiently permanent residence status can be very stringent. The second group of factors concerns literacy, language and cultural differences. Third, Mladovsky mentions factors of administrative and bureaucratic nature, lack of knowledge of the system and distrust of health-care providers. Norway, as a member of EEA, implements most of the EU legislation regarding access to health care. Legal migrants are granted the same rights to use healthcare facilities as Norwegians. However, it is not sufficient to entitle migrants to use health care and provide them with access to health care services. They may, for instance, need longer consultations or require the presence of an interpreter. The research conducted by Kawczyńska-Butrym (2009) among Polish migrants shows that when they visit their families in Poland, they also schedule visits to a doctor at private medical centres. A similar strategy is used by Polish migrants to Norway. More than 60% of the respondents reported visiting doctors in Poland more frequently than in Norway; 41% of the respondents had visited at least one doctor in Norway (usually a general practitioner). Among the types of doctors they prefer to visit in Poland, the respondents mentioned gynaecologists and dentists. The reasons given were: absence of language problems, much lower costs of medical services, better access to information on healthcare services, trust in Polish health care services, better accessibility of healthcare services in Poland and lack of residence permit in Norway. Table 5 shows which action they took in case of illness in Poland and Norway (Table 5). Table 5. Coping strategies of Polish migrants when facing a health problem (%) Source: Czapka (2010:26)

Coping strategies

Poland (%)

Norway (%)

I go to see a doctor

50

18

I try to find treatment for myself

58

67

I ask a friend for advice

14

18

I wait until I recover

20

28

The health of new labour migrants: Polish migrants in Norway

Half of the respondents report visiting a doctor if they fall ill in Poland, while only 18% do the same when in Norway. This confirms that Polish migrants face barriers in accessing Norwegian healthcare services. Among them are lack of information, language and economic barriers. Almost 60% of the respondents expressed their wish to obtain more information about medical services in Norway. A 52-year-old construction worker said: Health? I always try to look after it, but obviously here in Norway it’s kind of blurred. They have a different approach to these health care services. In Poland everyone has a medical centre, a family doctor and here it’s far less clear. Well, you get assigned some kind of area, some sort of a medical centre once you get your personal ID number. But I haven’t used it yet.

Research conducted among migrants in Sweden shows that knowledge of the language was correlated with the self-evaluation of one’s health condition and the use of healthcare services (Wiking et al., 2004). This was also observed among Polish migrants to Norway. Those who did not know Norwegian declared that they would see a doctor when they need one ten times less frequently than those who know the language. The former group was characterised by the lowest level of self-reported mental health. One of the leaders of the Polish community in Norway explained how important the language is for migrants: About the Poles who are arriving here these days and what I think of them, the Polish people in Norway have an extremely difficult situation, mostly because their access to language learning is highly limited.

The third reason why migrants use medical services in Norway so rarely is the necessity to pay for a visit to a doctor. Although the payment may be rather symbolic for Norwegians, it is frequently a significant barrier for Polish work migrants who go to Norway to earn money and send it to their families back in Poland. To sum up, the results of the research indicate the existence of barriers in the accessibility of Norwegian healthcare services, despite legal regulations granting equal access to medical services for both Norwegians and migrants. Limited access to information and poor language proficiency seem the most significant explanatory factors. In the contemporary world, defined as a network or information society, certain social groups, including poorly educated migrants who do not know foreign languages, are at risk of being marginalised. As Van Dijk (2006: 177) says, if no actions are taken by specific institutions, “ethnic minorities will undoubtedly be among the ‘misfits’ of the network society in every respect, both in work and in social communications”.

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3.3 Lifestyle changes Migration is always accompanied by a change of lifestyle concerning leisure time, food, sexual life, the use of substances (alcohol, cigarettes, drugs), physical activity and sleeping. These changes are usually accompanied by health deterioration due to unfavourable health behaviours among migrants. They want to earn as much as possible in the shortest possible time and caring for their health is not on their priority list. This may be risky if the return to Poland is postponed too long. Siciński (1988, p.11) defines lifestyle as “the syndrome of everyday behaviours, specific for a given community, in other words: lifestyle that distinguishes one community or an individual from another. Lifestyle is frequently not imposed on an individual, as there is a catalogue of behaviours and options”. This means, as Elstad (2000) points out, that individuals can modify their behaviours. Most human behaviour and attitudes are structurally conditioned, i.e. situated in the social context. An individual takes decisions in a given multidimensional context. According to Polish labour migrants to Norway, their lifestyle in Oslo is different from their lifestyle in Poland. The period of the greatest changes is the first year of working abroad, when migrants save money at the cost of food – and consequently their health. Here are two migrants on this issue: I think most Poles here are trying hard to save money. Food and health suffer as a result. You can see it when you look at some of them, who are malnourished and don`t seem to care enough. They keep drinking, smoking cigarettes and saving on food, I’m afraid. At first I surely had that attitude. You would buy the cheapest products and somehow it must have had an influence on health, because I experienced it myself. Well, you have to pay for good food, as simple as that. It seems to me that the majority of Poles here have the same tendency to buy the cheaper stuff … Yes, I believe the first year is hard. The first year is a kind of for and against. You find answers to all the question marks in your head.

Almost a quarter of the respondents spent less than 10% of their earnings on food. Considering the high prices of food in Norway, this means that they bought the cheapest products available. It is a common practice among migrants to bring food from Poland, especially meat. 36% of the respondents declared they would like to eat more regularly and 26% would like to change the quality of food they eat. Because of the high price of alcohol and cigarettes in Norway it could be assumed that respondents would report limited use. This was the case with smoking, and 16% of respondents even quit smoking abroad.

The health of new labour migrants: Polish migrants in Norway

Cigarettes are too expensive, there are no places to smoke, it is fashionable not to smoke, the climate is so great in Norway…

Frequent drinking seems to be an element of life, especially for those migrants who miss their families and try to fill their spare time with something. Thirteen percent of the interviewees would like to limit or quit drinking alcohol. You drink a little more here (everyone bursts out laughing). Because alcohol abuse is on the increase here.

Twenty-eight percent of the respondents reported changes in their sexual life. The most frequent answers included: higher number of sexual partners, sexual initiation, casual sexual contacts and rendering sex services. As many as 16% of the respondents had heard of Polish persons who worked as prostitutes in Norway. Moreover, it was a characteristic phenomenon to have a wife or husband back in Poland and another partner in Norway. One young migrant observed that “being abroad brings people closer to each other”. Divorces are becoming a possible consequence of migration in these circumstances. Around 30% of the respondents reported to do sports more often in Norway than they did in Poland. Among the reasons were “better sports facilities”, “the majority of people here do sports”, “I feel like doing sports more here”, “I am in a better financial situation here”. Many Norwegians pay special attention to keeping fit. Not all migrants, however, liked the sports-related enthusiasm of Norwegians. Some marvelled at Norwegians’ attitude to sport, while others considered it as a substitute for religion. 4. Conclusion The health of Polish migrants to Norway changes compared to the time before emigration. Health problems reported are closely related to the physical nature of the jobs the respondents do and to the social isolation they experience. Not knowing the language prevents migrants from participating in the life of Norwegian society and using healthcare services. Looking after their own health is a secondary priority for most migrants; their primary goal is earning money. In case of more serious health problems, respondents declared they would return to Poland and continue the treatment there. While abroad, many use the strategy of self-treatment and waiting for the disease to subside. In many countries, migrants constitute a fairly high proportion of the population. It is unlikely that this will change in the near future. Many European labour markets still show shortages, and the majority of European societies experience the

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demographic process of ageing. Thus, migration movements constitute a structural need in Europe. New labour migrants from the EU27 may appear to be culturally closer than migrants from African or Asia. Because this seeming proximity, it may be even more difficult to predict and notice problems that accompanying the integration of these migrants in the host country, in particular the difficulties related to accessing health care. Research on migrants’ health is badly needed, not only for the sake of the migrants but also to shed light on the functioning of the health system. Migrants can sometimes offer a new perspective on matters that the local has got into the habit of taking for granted. References Czapka E. (2010). The Health of Polish labour immigrants in Norway. Oslo: NAKMI. Elstad J. I. (2000). Social inequalities in health and their explanations. Oslo: Norwegian Social Research NOVA. Favell A. (2008). The New face of East-West migration in Europe. Journal of Ethnic and Migration Studies, 34(5), 701-716. Galbraith J.K. (1979). The Nature of Mass Poverty. Cambridge, Mass: Harvard University Press. Grabowska-Lusińska I. & Okólski M. (2009). Emigracja ostatnia? Warszawa: SCHOLAR. Kawczyńska-Butrym Z. (2008). Gains and Losses of the Participants of Migration – Findings of the Author’s Research. In: M. S. Zięba (Ed.) Migration – a Challenge to the 21st Century (pp. 183-192). Lublin: KUL. Kawczyńska-Butrym Z. (2009). Migracje. Wybrane zagadnienia. Lublin: UMCS. Markowski K., Kawczyńska – Butrym Z., Bryk D. & Rożnowski B. (2010). Raport z badań realizowanych w ramach projektu „Adaptacja reemigrantek na regionalnym rynku pracy – badania, analizy i upowszechnianie”, Lublin: KUL. Mladovsky, P. (2007). Migrant health in the EU. Eurohealth, 13(1), 9-11. Okólski, M. (2004). Migracje a globalizacja. In: E. Czarny (Ed.) Globalizacja od A do Z. Warszawa: NBP. Papastergiadis N. (2004). The turbulence of migration. Cambridge: Polity Press. Siciński A. (1988). Wprowadzenie. In: A. Siciński (Ed.) Style życia w miastach polskich (u progu kryzysu), Wrocław: Ossolineum. Stalker P. (2000). Workers without frontiers. The impact of globalization on international migration. London: ILO. Van Dijk, J. (2006). The network society, London: Sage. Wiking E., Johansson S. & Sundquist J. (2004). Ethnicity, acculturation and self reported health. A population base study among immigrants from Poland, Turkey, and Iran in Sweden. Journal of Epidemiology and Community Health, 58, 574582.

The health of new labour migrants: Polish migrants in Norway

Wiśniewski, J. & Duszczyk, M. (2007). Analiza społeczno-demograficzna migracji zarobkowej Polaków do państw EOG po 1 maja 2004 roku, Warszawa: Instytut Spraw Publicznych. Zaiceva A. & Zimmermann, K.F. (2008). Scale, diversity, and determinants of labour migration in Europe, Bonn: Institute for the study of Labour IZA.

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Chapter 11

Mental health and wellbeing of intermarried couples in Denmark: implications for psychosocial services

Rashmi Singla & Dagny Holm

1. Introduction Intermarried couples in Denmark face a range of psychosocial challenges in the context of the dominant discourse of homogeneity coexisting with ethnic diversity. The chapter deals with the couples’ managing of everyday life, their mental health and wellbeing, and implications for health promotion and counselling, based primarily on an explorative study. A theoretical framework focusing on intersectionality, everyday life management and the life course forms the basis of the study. The ten participants are persons in mixed relationships where one partner is from South Asia and the other a native Dane forming ‘visibly ethnically different couples’ (Phoenix, 2011). The analysis indicates that internal, personal and family aspects, such as realistic plans, everyday practices, and ‘focusing on the fun part’, are in interplay with the external aspects such as dominant gender roles, formal and informal social acceptance of the intermarriage, and recognition and inclusion for the mixed couples. Some of these aspects and practices are related to positive mental health and wellbeing depending on the phase of the life course. The implications for counselling concern paying simultaneous attention to internal and external aspects and inclusive practice. The issue of mixedness also needs to be addressed in society, relevant services, research and policy.

Mental health and wellbeing of intermarried couples in Denmark

2. Background This chapter deals with some psychosocial challenges faced by intermarried couples, how they manage everyday life, and the implications for mental health and counselling in Denmark. Scandinavian countries including Denmark are characterised by egalitarian principles and ‘homogeneity’ on the one hand, together with increasing ethnic diversity on the other. Migrants and their descendents comprise 10% of the population of 5.5 million (Danmarks Statistik, 2011). At the same time there is increasing polarisation at various levels between ‘ us’ and ‘them’. However, the public rhetoric of Danish cultural and social homogeneity sits uneasily alongside historical and regional differentiation, social class and increasing consumerism during this age of globalisation; this is seen as one of the paradoxes related to Danishness (Jenkins, 2011). In Denmark and the rest of Europe, efforts are being made to adapt various systems, including the legal, medical and psychosocial, to increasing cultural and ethnic diversity. Sustainable adaptation of systems can be attained if all couples and families, whether they are mono-ethnic or ethnically mixed, have the possibility for health promotion, prevention, and counselling of psychosocial problems and distress. Phenomena related to intermarriages (popularly known as ‘mixed marriages’) shed much light on the complex interconnections between cultural, economic, interpersonal and emotional realms of experience (Padilla et al., 2007). There can be an increased risk of disruption in intermarriages and higher rates of divorce among intermarried couples compared to homogamous couples (Kalmjin, 2010). However, it is relevant to point out that in the industrialised Western countries approximately 40% of marriages end in divorce, with children involved in 70% of cases, and half of all divorces occurring in the first seven years of marriage (Hahlweg, 2010). In Denmark, intermarried couples and children of mixed parentage are almost invisible as a statistical category and hardly recognised as a social category in educational institutions and in the psychosocial services. In other respects too, the Danish scene is characterised by a tendency to ignore mixed partnerships; however the phenomenon has recently received a lot of political attention, as new legislation has been introduced to regulate it. From 2002 onwards mixed marriages have been subject to extremely strict laws relating to family reunification, which include the ‘24 years requirement’ (both partners have to be 24 years of age) and the ‘attachment requirement’ (together, the Danish resident and the spouse must have significantly more attachment to Denmark than their combined attachment to any other country). The attachment requirement does not apply if the partner in Denmark has held Danish citizenship for over 28 years. Moreover there are a number of economic requirements, for example that the spouse in Denmark must be able to support both themselves and the partner. In 2011, following a change of government, some of these rules were slightly changed (New to Denmark, 2011).

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Between 1990 and 2010 intermarriages have shown a gradual increase, from 4% to 6% of all marriages (Danmarks Statistik, 2011). However, this is a low proportion compared to the US, where there has been a steep rise (Qian, 2005) with at present one in seven (14%) new marriages taking place between spouses of different races or ethnicities (Saulny, 2011). Of course, we must take account of the fact that the overall level of intermarriage will be related to the prevalence of ethnic and racial minority groups, which is much higher in the US (>30%) than in DK (10%). Data also exist on the joint gender-nationality and ethnicity distribution, which indicates that there are more often women of non-Danish origin compared with men in such marriages (Singla & Holm, forthcoming). This offers interesting insights into issues of power; according to Ifekwunigwe (2004) the usual hierarchy is majority European men at the top, majority European women under them, followed by minority non-European men and at the very bottom, minority non-European women. The fluidity of marriage positions, modern identities and gender roles in Danish society and their significance for mental health, forms the background for this article. We perceive intermarriage as a constellation of intimate relationships between a minority and a majority person, regarding it as a prism through which inclusion and exclusion processes at various levels can be studied. As the present study deals primarily with persons who constitute non-clinical mixed couples, rather than those who have contacted or have been contacted by psycho-social services, the issues of counselling and therapy are dealt with briefly in the last part. We believe that a focus on the good practices in managing everyday life by intermarried couples related to positive mental health conceptualised as psychological well being, negotiating mixedness as well as the conflict situations that can arise from it, can form the basis for health promotion, prevention of psychosocial problems and recommendations for good practice in couple counselling. 3. Theoretical Framework Our theoretical framework includes both subjective understandings and structural conditions. A cultural-historical approach (Valsiner, 2008) underlies this. In additional, an intersectional approach (Crenshaw, 2011; Phoenix, 2011) directs attention to the multiple categories to which persons in mixed marriages belong. Ethnicity, gender and class are considered as the ‘big three’ and most often invoked in social analyses – but moving beyond these, life-course position, and career positioning are also relevant. The life-course perspective (Levy et al., 2005) directs attention to the transitions which take place along the life trajectories, focussing on the interaction between individual agency and the structural context, while an everyday-life perspective contributes by exploring the persons in their social relations, their attitudes and handling of societal conditions and social limitations (Singla, 2008). How

Mental health and wellbeing of intermarried couples in Denmark

do people, together with others, maintain and change society and thereby create it (Beck-Jorgensen, 1994)? Furthermore, concepts such as diaspora and transnationalism are invoked to investigate non-native partner or diaspora spouses’ continued connection with the country of origin and with their ethnic identity (Vertovec, 2000; Dufoix, 2008). Being mixed is seen as being part of shared elements of lived social experience (Olumide, 2002); mixedness understandings (Root, 1992; Ifekwunigwe, 2002) and a broad perception of mental health and wellbeing also form a part of this critical, eclectic theoretical framework. 4. Empirical method The article is based on a initial, explorative research project about intermarried couples where one partner is from South Asia and the other a native Dane, thus forming a ‘visibly ethnically different’ couple (Phoenix, 2011), conducted in Copenhagen during 2010. In-depth interviews (Kvale & Brinkman, 2009; Dunger, 2010) were conducted with 10 intermarried adults. The participants were contacted through key persons in the mixed couple networks, who functioned as gatekeepers (Sanghera & Thapar-Bjokert, 2007) in the difficult access process. The participants in this study were between 21–61 years and had been married for a few months up to 27 years at the time of the interview. Participants were initially contacted through telephone calls and e-mails. The interviews were conducted primarily in Danish and English. The interviews took place, according to participants’ choice at their residences, though one interview was conducted through Skype, as the participant had recently moved to Hong Kong. Ethical considerations form a salient part of the study, as the interviews dealt with sensitive and intimate issues. The study followed the Nordic ethical guidelines for research. 5. Analytical strategies and themes The project is situated at the intersection between politics of identity, intimate relations and mental health. We investigate the meaning-making process by examining how the informants express themselves as well as what they tell. Our analytic strategy encourages sensitivity towards minority research by highlighting processes of both inclusion and exclusion. The major analytical themes, based on intense reading and meaning condensation of the narratives, are as follows (see Singla & Holm, forthcoming, for a full description). This chapter will focus on two themes: managing everyday life, and mental health. The analysis is primarily based on material from five women (Sabina, Nihla, Raaka in Indian/Pakistani-Danish marriages, Katja and Cecilia in Danish-Indian marriages, with additional material from their

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husbands (Robert, Mads, Ram, Sam and Klaus). Summing up, the themes were as follows: – – – – –

Managing everyday life, including gender and power issues Identity dynamics Transnationalism and diasporic relations Parenting practices and ideals in the mixed families Mental health and wellbeing of the intermarried couples.

6. Results 6.1 Theme 1: Managing everyday life, including gender and power issues In the Danish context of ‘homogeneity’, characterised by the dominant stereotyped opposition between ‘us’ and ‘them’, the intermarried couples and their children offer a challenge. At the same time the couples themselves face challenges, both opportunities and limitations in relation to their self-understandings, their family and their networks, due to their ‘fixedness’ in interplay with broader society and transnational relations. The analysis of everyday life management indicates some practices such as ongoing reciprocal negotiations, acceptance of differences and developing own ‘ways’ and compromises which involve a negotiation of gender position, cultural and social capital. Along with a focus on the societal and the personal aspects in the everyday life perspective (Beck-Jørgensen, 1994), activities, habits, routines etc. which create a certain continuity and ‘normality’ (Highmore, 2002) are also included. Therefore, it is a methodological challenge to disentangle the ‘abnormal’ from the ‘normal’ in developing an understanding of the practices of everyday life. People construct and structure their everyday life though different strategies and adjustments, as an ongoing meaning-making process. The participants construct their everyday life by using different identity strategies, by foregrounding some aspects of married life, depending on their life course phase and duration of their marriage. Based on these, the participants are divided into the following three groups, in which career status, ethnicity etc. intersect in different ways in the narratives about marriage. A. Honeymoon phase In the first stage of married life, cultural differences are perceived as an interesting aspect of the partner; there is a great sense of mobility and hybridity. Within discourses of romantic love, problems are hardly focused on during this phase. The couples attempt to build a joint identity built upon compromises, and they are driven by career opportunities and future family plans.

Mental health and wellbeing of intermarried couples in Denmark

B. Family establishment phase The next stage in married life is characterised by more conflicting positions; differences come to be experienced as problematic. In the construction of a balance between work and family, gender roles and parenting tasks, new ways of life are practiced and negotiated. At the same time a more definite joint identity takes shape and the couples face the challenges of living a transnational lifestyle. C. Reclining phase The last stage concerns couples that have been together for a longer period of time. They have lived in the same country for some years and ‘settled down.’ These couples are characterised by less mobility with a strong construction of joint identity, illustrated by shared opinions and a forefronted ‘we’. Arguments and differences in everyday life are expressed as a ‘natural’ part of living, and therefore not threatening to the marriage. Cultural differences recede into the background and politics and external social circumstances become more foregrounded. Analytical illustrations In the following analysis, these three stages are illustrated through the narratives of the participants. A. Honeymoon phase Indian origin Sabina, born and brought up in Denmark and recently married to Danish Robert, identifies herself strongly as a vegetarian. She describes how food is and has been a concern for her – one of the compromises she has made for their intimate relationship: I have disapproved of non-vegetarians and didn’t think it was the pure form of eating. Actually I wasn’t so aware that I had such strong thoughts about it, and I thought that if I was getting married to someone who ate meat I would never cook for him and he could have his own section in the fridge…and our children are definitely not going to eat meat… And now I cook meat and I eat fish.

According to Sabina the compromise – eating some kinds of meat – should not be understood as superficial or less important than other couples’ challenges. But the quotation serves as an illustration of the changes and compromises couples may make. Everyday compromises in the honeymoon phase can be viewed as a first level of practical adjustments, where the couples ‘fall into place’ and get closer to a joint identity constructed out of two, perhaps radically different sets of views and habits. Mobility is another common feature of the first phase of being married. This is well illustrated by Sabita and Robert, who met in England, studied in New York and are

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living in Hong Kong. For Indian Ram, married three years previously to Danish Katja, there had been a lot of travelling as they met in India and were periodically there until their daughter’s birth a year back. They plan to live in both countries: Well we’d always had this ideal dream of being six months in India and four months here, in a place where it is warmer that could also be nice, and I think that we are working towards it …

For him and Katja, along with mobility, the fun part of being together is salient: …it’s super exciting and we both really love to make a lot of plans, doing things, so that’s, my mum always told me that there is an everyday life as well, but we always feel like we are on a vacation so that’s really nice….

Katja is positive about her own married life and Ram’s part-time job, but points out the structural problems mostly faced by partners from the other country in transnational mixed marriages like hers, related to discrimination and limited recognition. She is aware of the difficulties, especially regarding the jobs for the diaspora spouse. As a foreign partner it is very hard to be in Denmark and it is based on well they can’t get a job and they can’t do what they really want to and they feel that they have the competences of doing something, and it’s a very complex issue.

However, she admits that they are also exposed to the gaze of strangers, as people notice them when they are together due to the visible differences in their physical appearance, in Denmark as well as India. As noted by Hall (1991) the self is inscribed in the gaze of the other. At the same time, Katja and Ram cope with the transformations concerning gender roles. Like that of other couples, their everyday life is structured around family and work, with Ram is working part-time and Katja working full-time. According to the dominant discourse of gender egalitarianism, women usually work part-time. Katja works more hours than Ram, but emphasises their equality: I don’t feel that I’m more important in the family ….. both are equally important and he is doing a big thing on the home front right now he can take Sarita [their daughter] to the [institution].

Ram also tells how they do gender in their own way by agreeing on their priorities, maintaining personal freedom and ideals of flexibility. His emphasis is on the availability of time as a major aspect of his wellbeing, discussed later.

Mental health and wellbeing of intermarried couples in Denmark

I think that we are on the same pace right now, totally. We have the same dreams and priorities. We have the same pace… it is perfect.

B. Family establishment phase By contrast, the gender struggle for Danish Cecilia, married four years back to Indian Sam, who is born and brought up in Denmark, implies a major change. From being a career woman to being a stay-at-home-mom is a transformation. She describes how her husband’s ethnic minority background plays a part in her decision to concentrate on the family rather than her career, in intersection with his company director job: Coming from his background, the women do all the practical stuff…it is still a little bit old-fashioned… He has never done these things and I don’t think that he realises the work you put into it.

Equality and gender roles are negotiated as a personal choice. In a way Cecilia also expresses satisfaction with her situation: it reflects a negotiation of power and positioning as an independent and thereby powerful woman. If you have asked me 10 years ago if I would have been a ‘stay-at-home mom’ more or less, I would have said: ‘definitely no’.... But that for us, it is not a cultural thing.

By saying that their (her) decision has nothing to do with culture, she narrates herself out of an oppressed gender positioning and defines her position as an individualistic one driven by personal choice. Cecilia’s narration can be viewed as an illustration of contradictions between personal demands, family demands and societal expectations (Beck-Gernsheim, 2002). At the same time, she is also aware of the dynamics involved in an interethnic relationship as she alludes to some disagreements with her mother-in-law. Cecilia at the same time emphasises the positive aspects of the bicultural situation and aspires to socialise her children through both the cultures. C. Reclining phase Indian Raaka and Danish Klaus have been married for 8 years, and just moved back to Denmark from India. We have chosen to place them within this phase because they have taken a decision to stay in Denmark for a longer period of time, and are not travelling much any more. As Raaka points that they have gained more experience and made some compromises both in married life. We know from practical experience that you can’t have it all... And I know my priorities and now put my 100% focus on family, and career second. Earlier it was career and I didn’t get my family.

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Another important feature illustrated above, characterizing the reclining phase, is how the couples as a ‘we’ about their hopes, dreams etc. The joint identity is more defined and strongly expressed, following the same ‘line’ in Klaus’ words, thereby underline their similarities as a common mindset. Klaus: We can have some heated arguments… we have very different views on…politics…about spending money.... …but we have a similar kind of purpose. We believe that this is the right thing for us. We have the same sort of line, the same direction.

Reflections These narratives about managing everyday life bring out on the one hand aspects of excitement, mobility, enrichment and fun, and on the other hand gender struggle, conflicts, disagreements and negotiations with spouses, mothers-in-law, the gaze of others and difficulties in the labour market. The complex intersections between not only the ‘big three’ categories (ethnicity, gender and class), but also the life course position and career status, affect everyday life. A. The first (‘honeymoon’) phase is marked by a perception of differences as exciting and interesting, along with initial negotiations and compromises, which can lead to either the cementing of the intimate relationship or its breakdown. There are more or less realistic abstract plans about career (“three months in India”, “settling in India or Denmark”, “job in Hong Kong”), which can mirror a spirit of adventure and curiosity towards the world. The cultural mixing or hybridity in concrete issues is also a part of this phase. These couples illustrate the three major approaches described by Root (1992): keeping mainly to one spouse’s cultural practices, or mixing those of both partners, or an open, cosmopolitan approach for managing the differences in the intermarried situation. We can see the mixed strategy in Sabina’s shift from vegetarianism to eating fish. However, these approaches are analytic categories which can overlap in practice. There are major changes in the first (‘honeymoon’) phase, while the next phase (‘family establishment’) is marked by less mobility and a confrontation with reality, which can lead to a strengthened ‘we’ identity as a couple. B. For a young Danish mother, the position as a stay-at-home mother may involve defensive reactions and dilemmas between the cultural value of being an independent career woman and being a good caregiver and full-time mother, when the husband has a high job position. The congruent everyday practice of partly stay-athome father is perceived as a symbol of freedom and celebration of ‘having time’ by Ram. These issues may impact similarly on homogamous couples. However, the ethicised and racialised belonging of one spouse implies additional dimensions,

Mental health and wellbeing of intermarried couples in Denmark

both opportunities and limitations. Sam’s Indian background and job may be interpreted as grounds for Cecilia’s response about the role of stay–at–home-mom being her own choice. The outside world’s gaze can also be seen as part of the additional dimension. Thus, similar everyday practices can involve different emotions when analysed through intersections of gender, ethnicity, career position and the socioeconomic situation. C. The third (‘reclining’) phase shows a more laid-back attitude, characterised by an acceptance of differences and agreement on prioritising major life values as the ‘we’ becomes more explicit. Arguments on minor differences become a normal part of life and attention is also directed towards ‘outside factors’ rather than ‘inside aspects.’ Mixed families can strive to be colour blind when they are alone. However, for the world outside their home, it is another story because people seem to notice race, as Saulny (2011) has depicted in the US. However mixed-race couples and their children choose to live their lives, as ‘just a family’, they cannot shake off their historical baggage or isolate themselves from the assumptions of the outside world, as these attitudes infiltrate their lives in both positive and negative ways, according to Ali Bhai-Brown (2001), Tizard & Phoenix (2002) and Phoenix (2011) in the UK. Twine (2010) describes experiences of white women married to black men and having children in the UK, emphasising their awareness of hyper-visibility. In our study both Katja and Cecilia show consciousness of their spouse’s ethnic background and phenotype, as well as their own ‘whiteness’ and position in the ethnic majority. Katja’s narrative highlights difficulties in the job market for the diaspora spouse and the gaze of the others. Osanami Torngren’s (2011) empirical study in Sweden shows that most Swedes are positive towards intermarriage and that there is a hierarchical preference for partners, with Europeans and Latin Americans most preferred, followed by South or East Asian, African and Middle Eastern partners in decending order of preference. The everyday life analysis shows couples managing the balance between the intra-family dynamics and the outside society’s reactions to the ‘visible ethnic differences’ (Phoenix, 2011). At the same time they are managing individualism and being part of a relationship and consequent conflicts, contradictory positions and opportunities. These practices of managing everyday life have consequences for mental health and wellbeing. 6.2 Theme 2: Mental health and wellbeing In line with Fernando (2010), we adopt a broad definition of mental health which includes the sense of identity and the significant social relationships. The focus is not a narrow psychiatric one, as our research is based on ’ordinary’ mixed couples, who contribute to our knowledge of risk factors and protective aspects related to mental health.

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Caballero et al. (2008), in their seminal research on parenting of mixed children in the UK, point to both interpersonal relationships within the family and the responses of others to mixedness. The primary sources of distress are delineated both as macro-cultural influences, consisting of social messages, family influences and the degree of acceptance from the community, and micro-cultural individual differences. The experiences of symptoms and their presentation may be separate processes (Bhui, 1999, Beck–Gernsheim (2002). Intersections between gender and family relations are highlighted in the following categories. i. Conflictual relations, transforming gender positions and commitments ii. Ambivalent relations, defensive gender positions and compromises iii. Supportive relations; flexible gender positions and fun part focus i. Conflictual relations The previously mentioned elevated risk of marital break-up in ethnic intermarriages (Kalmjin, 2010) is illustrated by the narrative of Pakistani Nihla, partly brought up in Denmark, and Danish Mads, married seven years before and now in the middle of a divorce procedure. The initial gender positions are transformed and commitment to the intimate partnership is doubted by Mads, while the seriousness of the institution of marriage is questioned by Nihla. Nihla explains that the institution of marriage was a means of legitimising their living together, through ‘a piece of paper’, as cohabitation was not a possibility in her family cultural context. We got married after knowing each other for a really short time and for me it was a question of having defined marriage as a relationship that is certified, okay? If that paper makes it easier for us to live together, then why not get get it?

There are both externalising problems, represented by Nihla’s aggressive behaviour towards her spouse, and internalising problems such as anxiety and dissatisfaction related to the issues of ‘Islamic circumcision of male child’ and ‘pork eating’. Although she denies the cultural, ethnic dimension, these issues are nevertheless salient: About the ‘snapsnap’ I think like about the circumcision, like Mads doesn’t see any point of this. For me it’s like not eating pork,… I have been brought up with this notion that is what you should be doing... there is some scientific evidence thing that it is more hygienic …somebody had to win that battle……I don’t see our relationship being like Mads being Danish and me being Pakistani, not at all. For me, he could be Egyptian and I could be the same I mean I don’t think it would matter.

Mental health and wellbeing of intermarried couples in Denmark

We can interpret that personal and cultural differences are intertwined in Nihla’s and Mads’ understandings and everyday practices. She attributes some of their differences to diverse cultural practices (‘snap snap’, eating pork etc), yet doesn’t perceive their ethnic backgrounds as related to the conflicts. This is observed as a commonality in many of the narratives, involving contradictions and complexities for the intermarried couples. There is some kind of dichotomy and separation between cultural differences in general and the participants’ own ethnic belongings, perceiving the latter as a ‘survival strategy’ or defence mechanism (Romaine, 1996). ii. Ambivalent relations The mental health and wellbeing in the second category is illustrated by Cecilia, who experiences dilemmas related to gender equality and being a good mother and housewife, where the cultural aspect is negated and the decision to be a ‘stayat-home mom’ is presented as her own personal choice. With some negotiations, humour, realistic awareness of economic factors and acceptance of the power imbalance, she manages everyday life and conflicts with ambivalence, as she is both positive about the decisions, yet defensive and uncomfortable about not having a job and husband’s limited participation in the parenting. Thus, the basic institution of marriage is not threatened for Cecilia, despite some tendencies to internalizing psychological problems. iii. Supportive relations In this category, Ram and Katja seem to experience positive mental health, as their focus is on the fun part of being together and on the supportive relationship with the extended families of both the spouses. Furthermore, a perception of creativity and broad possibilities characterises the couples. The gender position as ‘partlystay-at-home father’ is perceived as symbolizing flexibility in time scheduling. Besides, the extended family and the network of friends are seen as accepting, curious and welcoming. Katja’s and Ram’s focus on universal morality indicates thinking beyond ethnic categories to being a part of the community of humanity, in some ways reminiscent of Ali’s discussion about a ‘post-race’ focus (Ali, 2003). Congruently, a focus on the fun part – highlighting the positive sides such the opportunities, choices in food, creativity, relatives in two countries – is expressed by Katja and Ram. This is an example of how being a mixed couple may contribute positively to mental health. 7. Implications for counselling & psychotherapy Our study points to aspects contributing to wellbeing and positive mental health in the context of globalisation, where intimate relationships are formed across ethnic borders. A simultaneous focus on the merits and pitfalls, opportunities and limita-

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tions of such relationships contributes to suggestions for mental health promotion, problem prevention and counselling for distressed couples. This implies simultaneous attention to internal and external aspects in an inclusive counselling practice. ‘Outside’ factors, such as the legal system or societal processes of exclusion and inclusion processes are salient, as they influence the power relation and privileges of the partners. The diaspora spouse’s position in the labour market (including the recognition of their educational and professional competences) is important. Support, a welcoming attitude and acceptance from social networks such as friends, neighbours, close and extended family also contribute to the couple’s wellbeing. There can be hindrances prior to marriage and continued barriers, such as gaze of other people implying ‘othering’ processes, as well as conflicts with the spouse and the extended family on specific practices, power issues related to gender and parenting. Cosmopolitanism as an approach to mixed relation implies transcending the narrow categorization into ‘us’ and ‘them’ and focusing on the commonality of being a member of the community of humanity. This approach could be recommended for couples for whom there is exaggerated focus on the differences and limited or no ability to focus on the common humanity. Furthermore, foregrounding the fun part, the positive and creative aspects expressed by the participants in the study, implies a resource perspective with a focus on the opportunities. In the Danish context, where mixedness is marginalised, targeted counselling and therapy services are advisable. A focus on concrete managing of everyday life and differences is an important ingredient of counselling. In line with the intersectionality framework in our study, Rastogi & Tomas (2009) argue that in psychotherapy with multicultural couples, the intersection of multiple areas of diversity should be considered at every step of the intervention. They also emphasise the importance for counsellors and psychotherapists of gaining skills in forming an alliance with couples. Raising awareness and addressing the issue of the complexity of social identities in the fields of research, policy-making and psychosocial services are important, and this exploratory study forms a step in that direction in Denmark. Promoting recognition of ‘mixedness’ and highlighting positive aspects of mixing is vital for challenging dominant discourses that problematise mixed marriages by definition. 8. Conclusion Drawing on narratives of intermarried couples in Denmark, this chapter highlights the perils and advantages which can influence their mental health and wellbeing, using an intersectionality perspective combined with an everyday-life and lifecourse perspective. In intersection with the ‘big three’ categories (ethnicity, gender and socioeconomic position), everyday life and wellbeing are also affected by lifecourse phase and career categories.

Mental health and wellbeing of intermarried couples in Denmark

We have seen that despite the dominant discourse on homogeneity, ethnic diversity – including the number of mixed marriages – is on the increase in Denmark. Mixed couples are subject to a gaze implying othering; they use a number of strategies to deal with consequent conflicts. The internal, personal and family aspects, such as making plans, mixing everyday practices, and focussing on the fun part, are in interplay with the external aspects such as formal and informal acceptance of the intermarriage in society, dominant gender roles, recognition and inclusion. Some of the practices analysed in the study contribute to positive mental health and wellbeing, and thus form a basis for health promotion, prevention of psychosocial problems and counselling for couples who experience problems. It is important for researchers, policy makers and caregivers to work together to improve the social situation and mental wellbeing of people in mixed relations. Such people face both internal and external challenges and in Denmark are usually overlooked in statistics and in educational and health sectors. Instead of imposing a dichotomy of ‘ethnic minority’ and ‘majority’ on the whole population, ‘mixed couples’ and ‘children with mixed parentage’ should be recognised as such. Lastly, we recommend establishing psychosocial services for these couples and their children, bringing a focus on the specific vulnerabilities and resources of these groups to health promotion, problem prevention, therapy and counselling. References Alisha-Brown, J. (2001). Mixed Feelings: The Complex Lives of Mixed Race Britons London: Women’s Press. Ali, S. (2003). Mixed-race, Post-race: new ethnicities and cultural practices. Oxford: Berg. Bech-Jørgensen, B. (1994). Når hver dag bliver hverdag [When every day becomes everyday], København: Akademisk Forlag. Beck–Gernsheim, E. (2002). Reinventing the Family: In Search of New Lifestyles, West Sussex: Wiley. Bhui, K. (1999). Common mental disorders among people with origins in or immigrants from India and Pakistan. International Review of Psychiatry 11(2/3), 136-144. Caballero, C., Edwards, R. & Puthussery, S. (2008). Parenting ‘mixed’ children: negotiating difference and belonging in mixed race, ethnicity and faith families, York: Joseph Rowntree Foundation. Crenshaw, K. (2011). Demarginalizing the Intersection of Race and Sex:  A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory and Antiracist Politics [originally published in 1989]. In: Lutz, H., Vivar, M.T.H. & Supik, L. (Eds.) Framing Intersectionality: Debates on a Multi- Faceted Concept in Gender Studies. Farnham: Ashgate. Danmarks Statistik (2011) Befolkning, Copenhagen: Danmarks Statistik. http://bit.ly/yhXJE8

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Dufoix, S. (2008). Diasporas, Berkley: University of California Press. Dunger, F.S. (2010). Making Sense of Intermarried Identities. Unpublished Masters Module project report, International Development Studies, Roskilde University. Fernando, S. (2010). Mental Health, Race and Culture (third edition), Hampshire: Palmgrave. Hahlweg, K., Baucom, D., Grawe-Gerber, M. & Snyder, D. (2010). Strengthening Couples and Families: Dissemination of Interventions for Treatment and Prevention of Couple Distress. In: Hahlweg, K., Grawe-Gerber, M. & Baucom, D. (Eds.) Enhancing Couples (pp. 3-29). Gottingen: Hogrefe. Hall, S. (1991). Old and New Identities, Old and New Ethnicities. In: King, A.D. (Ed.) Culture Globalisation and the World System. Oxford, Macmillan Highmore, B (2002). Everyday Life and Culture Theory, London: Routledge. Ifekwungwe, J.O. (2004). ‘Mixed Race Studies’: A Reader, London: Routledge. Jenkins, R. (2011). Being Danish: Paradoxes of Identity in Everyday Life, Copenhagen: Museum Tusculanum Press. Kalmijn, M. (2010). Country differences in the effects of divorce on well-being: The role of norms, support, and selectivity. European Sociological Review, 26(4), 475-490. Karla, V., Kaur, R. & Hutnyk, J. (2005). Diaspora & Hybridity, New Delhi: Sage. Kvale S. & Brinkmann, S. (2009). InterViews: learning the craft of qualitative research interviewing. New Delhi: Sage. Levy, R., Ghisletta, J.-M., Le Goff, D. & Widmer, E. (Eds.) (2005). Towards an Interdisciplinary Perspective on the Life Course. Amsterdam: Elsevier New to Denmark (2011). New family reunification rules. Copenhagen: Danish Immigration Service. http://bit.ly/zmUFGM Olumide, J. (2002). Raiding the Gene Pool: The Social Construction of Mixed Race. London, Pluto Press. Padilla, M.B., Hirsch, J.S., Munoz-Laboy, M., Sember, R. & Parker, R.G. (Eds.) (2007). Love and globalization: Transformations of intimacy in the contemporary world, Nashville: Vanderbilt University Press. Phoenix, A. (2011). Psychosocial intersections: Contextualising the accounts of adults who grew up in visibly ethnically different housholds. In: Lutz, H., Vivar, M.T.H. & Supik, L. (Eds.) Framing Intersectionality: Debates on a Multi- Faceted Concept in Gender Studies. Farnham: Ashgate. Qian, Z. (2005). Breaking the last taboo: interracial marriage in America. Contexts, 4(4), 33-37. Rastogi, M. & Thomas, V. (Eds.) (2009). Multicultural Couple Therapy, New Delhi: Sage. Romain, J. (1996). Till Faith Us Do Part: Couples who Fall in Love across the Religious Divide, London: Fount. Romano, D. (2008). Intercultural Marriages: Promises and Pitfalls (revised edition), Boston: Intercultural Press. Root, M.P.P. (Ed.) (1992). Racially Mixed People of America, Thousand Oaks: Sage.

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Sanghera, G. & Thapar-Bjokert, S. (2007). Methodological Issues: Gatekeepers and Positionality in Bradford. Ethnic and Racial Studies, 31(3), 543-562. Saulny, Susan (2011). In Strangers glances, tensions Linger. New York Times, October 12th 2011. http://nyti.ms/wpcoZa Singla, R. (2008). Now And Then – Life Trajectories, Family Relationships and Diasporic Identities: A follow-up Study of Young Adults. Copenhagen: Copenhagen University (The Copenhagen Studies in Bilingualism). Singla, R. and Holm, D. (forthcoming). Intermarried Couples, parenting children of mixed parentage in Denmark: Mental health and well being. Tharp, R. (1970). Psychological Patterning in Marriage [originally published in 1963]. In Grey. A.L. (Ed.) Man, woman, and marriage. Small group process in the family (pp. 62-95) New Jersey: Transaction Publishers. Tizard, B. & Phoenix, A. (2002). Black, White or Mixed Race? Race and racism in the lives of young people of mixed parentage, revised edition, London: Routledge. Torngren, S.O. (2011). Love Ain’t Got No Color? – Attitude Toward Interracial Marriage in Sweden. Ph.D. thesis, Malmö University. Studies in International Migration and Ethnic Relations No.10. http://bit.ly/yNGO63 Twine, F.W. (2010). A White Side of Black Britain: Interracial Intimacy and Racial Literacy, Durham: Duke University Press. Valsiner, J. (2008). The social and the cultural: Where do they meet? In: Sugiman, T., Gergen, K.J., Wagner, W. & Yamada, Y. (Eds.) Meaning in action: Constructions, narratives, and representations (pp. 273-287). Tokyo: Springer. Vertovec, S. (2000). The Hindu Diaspora: Comparative Patterns. London: Routledge.

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Chapter 12

Perinatal morbidity and mortality among migrants in Europe

Erika Sievers

1. Introduction The global importance of perinatal health has been acknowledged in the United Nations Millennium Developmental Goals and is being energetically promoted by the World Health Organization (WHO, 2005; PMNCH, 2011). By their very nature, pregnancy and childbirth are challenging experiences for young families all over the world. A continuum of care throughout all levels and sectors involved is needed, including social support, reproductive, maternal, newborn and child health. At the same time, the health of migrants has been moving up in importance on the European agenda. In the concrete situation, however, migrant families may be separated from their social networks, face poor access to health care services and encounter discrimination within the health system of the country of immigration. The challenges for pregnant migrant women and the early childhood of their children in Europe may involve threats, but they are also opportunities. Already a clear picture is emerging of the policy measures needed to meet these challenges (WHO, 2010; IOM, 2009). Inequalities in immigrant infant morbidity or mortality compared to the native population have been reported from several European countries. However, they are not found in all immigrant groups and countries (Gissler et al., 2009). In recent decades, the long-term consequences of ill-health in early life for adult health, as well as the importance of the mother’s health for the health of her offspring, have been increasingly recognised. In this chapter we will try to outline a perspective on the perinatal health of immigrant families in Europe. For the reader who is not specialised in this field, it may be useful to provide the following definitions: perinatal mortality is the number of stillbirths and deaths in the first week of life per 1000 births (‰). The infant mortality rate is the number of children dying under a year of age divided by the number of live births in that

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year.  Table 1, which we shall refer to several times in the text, shows figures for perinatal and infant mortality for the period 2001-2005 in North Rhine Westphalia, Germany’s most populous state, broken down according to the region of origin of the mothers. Table 1. Perinatal and infant mortality in North Rhine Westphalia and in Turkey Regional origin according to infant nationality country groups according the German perinatal database scheme Middle East, North Africa including Turkey Africa, other countries Mediterranean countries, former Yugoslavia Eastern Europe Germany

Perinatal and infant mortality 2001-2005 in North Rhine Westphalia* Infant mortality Live births

Early infant mortality (Day 0-6)

Per 1000 live births

Stillbirths

Perinatal mortality

Per 1000 live and still births

18,897

14.5

7.9

13.7

21.5

3,000

10.7

6.3

6.6

12,9

16,361

5.3

3.2

8.1

11.2

4,779

1.7

0.8

6.0

6.9

750,645

4.5

2.2

3.5

5.7

Turkey

12,233

18.6

10.4

17.7

27.9

Turkey

-

Turkey** - National infant mortality 2005 23.6

-

-

Data sources: * Landesamt für Datenverarbeitung und Statistik NRW - LDS NRW; Landesinstitut für den Öffentlichen Gesundheitsdienst NRW – lögd; own calculations, ** Eurostat, accessed online: http://bit.ly/AuEyRh

2. The right to maternal and child health International treaties and organizations support entitlement to maternal and child health care on the basis of human rights. Many refer to the Convention on the Rights of the Child (UN, 1989), which states in Article 24: 1. States Parties recognize the right of the child to the enjoyment of the highest attainable standard of health and to facilities for the treatment of illness and rehabilitation of health. States Parties shall strive to ensure that no child is deprived of his or her right of access to such health care services. 2. States Parties shall pursue full implementation of this right and, in particular, shall take appropriate measures … to ensure appropriate pre-natal and post-natal heath care for mothers…

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This approach sets clear targets to be achieved for migrant populations in Europe. Transparent information for immigrating women in reproductive age about the access to sexual and reproductive health prevention and medical care would be a key element. But still only a few member states of the EU grant migrant families universal access to national health system (IOM, 2009). In particular, vulnerable groups like undocumented migrants lack access to pregnancy care and prevention (Wolff et al., 2008). Though the mortality risk among babies born to migrants in Europe is not consistently higher, it appears to be greatest among refugees and non-European migrants (Gissler et al., 2009). 3. Early information and provision of support for migrants Research on migrant reproductive health must be interdisciplinary, because the data necessary to develop policies may be scattered over different sectors like demography, immigration data or health statistics. Regional demographic and socioeconomic profiles are important for planning targeted services in reproductive health and shaping public health interventions that are responsive to needs. Medical services may be fragmented between medical disciplines and this forms an obstacle to mothers looking for a continuum of care and integrated support, which is particularly needed in the first pregnancy. This may, however, be partly compensated by the support of new immigrants by their own communities. In Germany, increasing attention has been paid to the reproductive health of Turkish immigrants: – Demographic analyses of the timing of the first childbirth in Germany of immigrant women from nations of labour recruitment in the 1960s, including Turkey, indicated that about 50% of mothers got pregnant within the first four years (Milewski, 2007). – The figures in Table 1 do not distinguish between newcomers, long-settled migrants and the second generation, because they are based on nationality. Though only a fraction of mothers with a Turkish migration background giving birth are new immigrants (David et al., 2006), this group may be in need of specific support. In particular, new immigrants may experience difficulties in getting full access to perinatal health services (Sievers, 2009; Urquia et al., 2010a). The potential importance of length of residence has been confirmed in other countries. Lower rates of prematurity have been described among recent immigrants to Canada (Urquia et al., 2010a), but increased rates of stillbirth were found among immigrants to Sweden (Ekéus et al., 2011). The length of maternal residence should always be recorded in perinatal migrant health statistics.

Perinatal morbidity and mortality among migrants in Europe

– The data of Table 1 demonstrate the existence of a problem that urgently needs to be tackled. Nevertheless, the results for Turkish migrant’s infant mortality were still lower than in Turkey itself at that time. The immigrant community itself may have perceived no difference, or even a ‘healthy effect’ of migration. The same may apply to other immigrant communities from countries with high levels of infant mortality. Migrants need to be made aware of the fact that levels of reproductive health can be raised to well above what they are at present. Migration flows are constantly changing, and health services must become responsive to developments like the feminization of migration, changing policies on family reunification (IOM, 2009) and the successive expansions of the EU (Cacciani et al., 2011). Health will also be affected by integration policies in the resettlement countries in Europe (Bollini et al., 2009), which are also subject to change. Access to health services must be provided for all migrant women, and unnecessary delays in seeking or receiving care should be minimised. Around pregnancy, many opportunities for prevention (such as folate supplementation) are time-sensitive and may not be fully compensated for in later life if the child is affected. Delayed access to prevention may result in exclusion from interventions. 4. Potential influences from countries of origin It is important to note that factors preceding migration may affect perinatal health, although those following immigration are generally more important. Like many health problems found among migrants (see Chapters 4 and 5), problems of reproductive, perinatal and child health show a strong socioeconomic gradient. It is not yet clear to what extent the problems migrants experience have to do their socioeconomic position in the host country, rather than their specific migrant status or country of origin. However, in the care for newly arrived migrant mothers and their children attention should be paid to maternal health in the country of origin, as well as to health information and beliefs, nutritional status and environmental exposures. Health impairments among migrants – especially refugees or undocumented immigrants – may not be addressed by mothers due to insecurity of legal status, and they may be overlooked by health professionals due to lack of awareness. Early provision of equal access, including skilled interpretation for pregnant women and their children, is needed. Interpreter services can lead to more appropriate and effective health care (Bischoff & Denhaerynck, 2010). Familial emotional support may be lacking. Health professionals also need to take account of traditional beliefs, rituals or traditional medical practices around pregnancy and birth, where these are relevant.

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The effects of changes in health systems within countries of origin may also gain importance. In Turkey, the transformation of the health system since 2003 resulted in improvements on several indicators, surpassing other middle income countries. Major changes in reproductive and infant health care have been introduced: for example, hospital delivery increased from 78% to 90%, the number of newborn intensive care beds rose more than threefold, free provision of iron in pregnancy and vitamin D in infancy was introduced, and the neonatal screening program was expanded and improved (Ministry of Health, Turkey, 2010). Thus, considerable investments in the health systems have been made in Turkey. In maternal and child health, the take-up of essential health services has been stimulated by reducing socio- cultural barriers and offering financial incentives. In addition, as guiding values and principles, the patient or citizen has been placed at the centre of change as the basis of all policy goals and performance evaluations (Baris et al., 2011). However, disparities in maternal and perinatal health (e.g. between urban and rural areas, Eastern Turkey and other regions, and different socioeconomic levels) are still present (Kültürsay, 2011). The changes taking place in their country of origin may have an impact on Turkish immigrant communities in Europe, for example in their state of health or health literacy. In the following sections we will focus on stillbirths, prematurity and infant mortality. Finally, we will discuss genetic conditions, chronic diseases and congenital malformations. 5. Stillbirths – an important indicator of migrant perinatal health A recent Lancet series (Frøen et al., 2011) highlighted the importance of addressing stillbirths in global health policy, starting with the collection and communication of disaggregated data on rates, causes and opportunities for prevention. Variations in customs across cultures have to be taken into account. Stillbirths are often accepted as destiny, though the mothers who experience it may be blamed and face social stigma and isolation Many of the interventions known to be effective for the prevention of stillbirths (Bhutta et al., 2011) are routine in developed countries. However, new immigrants may not be aware of them as they may not have been available in the country of origin; moreover, access in the countries of destination may be limited. Therefore, levels of stillbirths may indicate the need for targeted pre- and perinatal health support in immigrant groups. In this respect there are important differences between mothers originating from different countries. Table 1 shows that migrants from North Africa and the Middle East including Turkey showed a stillbirth rate of 13.7‰, compared to 3.5‰) among mothers of German origin. The rate for mothers coming from other parts of Africa was 6.6‰, while that for mothers from Mediterranean countries and the

Perinatal morbidity and mortality among migrants in Europe

former Yugoslavia was 8.1‰. Although there are considerable differences in both migrant populations and health policies, a raised incidence of stillbirths has been found in women from Africa and Turkey in Belgium (Racape et al., 2010), and from Africa and the Middle East in Sweden (Ekéus et al., 2011). It is particularly interesting to compare the outcomes for migrants from a particular country of origin in different destination countries within Europe. Such data are available for women from Somalia and Turkey. – Compared with natives of the destination country, Somali-born women had a higher rate of stillbirths in Finland, Sweden, Norway and Australia. However, they were less likely to give birth preterm, or to have infants of low birth weight. Miscommunication with this group of patients has been reported in perinatal care in European countries as a factor which may have effects on clinical outcomes (Essén et al., 2002; Thierfelder et al., 2005). Traditional genital cutting and infibulation is an issue in Somali-born women. In view of an excess of caesarean sections, particularly in first births, concerns about the provision of appropriate maternity care for Somali migrants have been raised (Small et al., 2008). – Among mothers with a Turkish migrant background, increased stillbirth rates were observed in Austria, England & Wales, Germany, Sweden and Switzerland, as well as similar trends in Norway, Denmark and Belgium (Villadsen et al., 2010). The variation in the results, however, suggests that there may be differences between the migrants choosing these different destinations as well as differences in the provision of health services. The perinatal health of refugees and undocumented migrants gives particular cause for concern. Because of their more restricted access to services, the uncertainty caused by their status, and the experiences they may have endured before, during and after migration, they may be an especially vulnerable group. This has been supported by reports of high stillbirth rates and early mortality rates (Gissler et al., 2009). However, further data are needed. Current health systems offer a wide range of interventions focused on health promotion, prevention and medical care before and during pregnancy and childbirth. Ease of access, effective availability, and organization differ widely between health systems, but these services should be provided universally irrespective of insurance or migrant status. Despite the fact that cultural and language barriers may have a significant impact on uptake and acceptance of prenatal care and routine procedures, training of health personnel in cultural competence is often inadequate. Addressing and preventing stillbirths among certain groups should receive increased attention.

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Prematurity Preterm birth is one of the main causes of morbidity and death in early infancy. It may result from a number of etiological factors and phenotypical characteristics, either independent of each other or overlapping. Some of these factors are also capable of affecting stillbirth rates and infant mortality; examples are maternal or fetal conditions before delivery, pathological placental conditions and access to medical help during the delivery (Villar et al., 2011). Lowered utilisation by some groups of prenatal prevention and care services, as discussed above, is of particular concern. Results of a longitudinal cohort study in the Netherlands demonstrated the existence of ethnic differences in premature birth. Higher risk compared to Dutch counterparts were observed for the Surinamese and Ghanaian women, particularly for iatrogenic (medically indicated) preterm birth (Goedhart et al., 2008), while risks were decreased in Turkish and Moroccan women. All minority groups except those from Turkey and Morocco had significantly higher rates of previous abortion. One conclusion was that ethnic minority groups should be seen as a target group for prevention of prematurity. Efforts to decrease smoking, obesity and advanced maternal age (by encouraging pregnancy at an earlier age) have been suggested. Obstetric and paediatric professionals should be aware of the possibility of variations between migrant or ethnic minority groups in the profile of established risk factors like obesity, smoking, maternal parity or age. These variations may explain why risks for prematurity and still births do not always point in the same direction. It is necessary to ensure that services addressing sexual health, contraception, healthy timing and spacing of pregnancy, etc. are available for those who need them most. In addition, it is essential to make all interventions targeting premature birth prevention culturally and linguistically appropriate and accessible for migrants and ethnic minorities. This applies as well to secondary and tertiary prevention and the treatment of premature infants, if needed, in later life. Infant mortality A global decline in neonatal and post-neonatal mortality has been observed in the last decade. However, the discrepancies between results obtained in the European Union and in less highly developed countries, especially in South Asia and SubSaharan Africa, are high (Rajaratnam et al., 2010). As noted above, there may be a relation between risk factors in the country of origin and poor health outcomes among migrants in Europe. In particular, mothers of Pakistani, sub-Saharan African and Turkish origin have been reported to experience raised levels of infant mortality compared to the majority population. – In England and Wales, infant mortality was particularly high among mothers originating from Pakistan (10.2‰) and the Caribbean (8.3‰) compared to the national average of all births (4.9‰) in 2002–2004. Reducing inequalities in infant mortality is seen as a policy priority (Department of Health,

Perinatal morbidity and mortality among migrants in Europe

2007). In Denmark, similar increases have been reported for Pakistani immigrants (11.3‰) compared to the majority population (6.2‰) between 1981 and 2003 (Villadsen et al., 2009). – Turks are the largest immigrant community, with an estimated 2,7 million Turks currently living in the European Union, two-thirds of them in Germany (İçduygu and Sert, 2009). Higher rates of infant mortality in Turkish immigrants have been reported (Troe et al., 2006; Sievers, 2009). Looking at the country of origin, Turkey had the highest infant mortality in Europe during the last decades, but achieved a reduction from 28.5‰ in 2003 to 13.1‰ in 2009 (Ministry of Health, Turkey, 2010). – The perinatal health of migrants of African origin has been of special concern. Increased infant mortality rates among these migrants have been recorded in, for example, Germany (Table 1) and Belgium (Racape et al., 2010). Both sources show higher rates of perinatal mortality compared to infant mortality. In Italy, the offspring of West and sub-Saharan African mothers had the highest rates for preterm delivery, lower five minute Apgar Scores, respiratory diseases, the need for special or intensive neonatal care, in-hospital deaths and congenital malformations (Cacciani et al., 2011). In Finland, African origin women experienced the most health problems during pregnancy, as described by hospital care due to bleeding, threatening preterm deliveries, hypertension before term, during childbirth and the worst perinatal outcomes in terms of premature birth and perinatal mortality (Mailin and Gissler 2008). In conclusion, special attention is needed for infant mortality and other perinatal problems among African migrants in Europe. Dependent on region and future migration flows, this may be applicable to other groups of immigrants as well. Practices of care in pregnancy and maternity should be re-examined carefully to see whether they meet specific maternal needs according to ethnicity and other nonclinical factors. Community involvement may be essential for improved perinatal outcome. Genetic and chronic diseases, congenital malformation Genetic diseases are differently distributed within populations and increased migration may change the genetic profile of a population, creating the need for adaptation of resources, e.g. expanded screening services. Excess risk for congenital anomalies and some rare genetic diseases has been reported in immigrants. In view of higher fertility rates compared to the native population, the perception in centres caring for diseases assessed in neonatal screening programs may even be more accentuated, e.g. for congenital metabolic disease.

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Congenital malformations are among the leading causes of death in infant mortality. Cultural or religious reasons may prevent termination of pregnancy when a diagnosis of malformations is made. An increased prevalence of recessive hereditary disorders or congenital malformations has been observed in populations of e.g. Turkish or Pakistani origin, among whom consanguineous marriages are customary (Troe et al., 2006; Schulpen et al., 2006, Suren et al., 2007). However, socio-cultural factors and perceived benefits may limit the success of recommendations to discourage this practice. However, the provision of effectively accessible premarital and preconception counselling is important to ensure informed decision making by future parents. Preconception consultation in primary health care settings may be a promising option (Hamamy, 2011). In addition, options for carrier screening in case of manifestation of recessive disorders in communities practicing consanguineous marriages should be provided. The provision of appropriate and acceptable services for qualified counselling remains a challenge. The wide variation of international patterns of chronic disease is reflected in multiethnic populations in Europe (Bhopal, 2009). Scientific progress in the reproductive health sector has created in many European countries new chances to offer mothers and fathers with many chronic diseases the opportunity of having healthy offspring. This may require e.g. prevention and treatment during pregnancy (e.g. maternal diabetes, phenylketonuria, HIV) or for the child (e.g. neonatal screening, dietetic treatment of phenylketonuria). Compliance of target families can only be based on full understanding of these measures. On the one hand, there is an urgent need for increased awareness of these problems among medical and immigration staff in order to avoid health inequalities for young families. On the other hand, resources have to be provided. Conclusion The diversity of issues around migrant perinatal health underline that it should be a public health priority to decrease current inequalities. Political decisions on immigration initiate and shape flows of migrants and, in consequence region-specific profiles and needs in migrant reproductive health. Recent international recommendations have been provided for reproductive, maternal, newborn and child health as well as for addressing heath inequities linked to migration and ethnicity. Governmental and professional commitment is needed to realise these opportunities for immigrant populations in Europe. Cooperation between all responsible sectors to achieve transparency and facilitate equal access to standard medical care for families in need should be achieved. Initial support, facilitated access and the provision of free and easily accessible language and cultural interpretation services are of special importance.

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The perinatal health of vulnerable groups of migrants requires special attention and support, e.g. refugees and undocumented migrants. There is an urgent need to make the perinatal health outcome of these groups visible and to ensure that chances of prevention in early life are not missed. References Baris, E., Mollahoalloçlu, S. & Aydin, S. (2011). Healthcare in Turkey: from laggard to leader. British Medical Journal, 342, 579-582. Bhopal, R. (2009). Chronic diseases in Europe’s migrant and ethnic minorities: challenges, solutions and a vision. European Journal of Public Health, 19(2), 140-143. Bhutta, Z.A., Yakoob, M.Y., Lawn, J.E., Rizvi, A., Friberg, I.K., Weissmann, E., Buchmann, E. & Goldenberg, R.L., for the Lancet’s Stillbirths Series steering committee (2011). Stillbirths: what difference can we make and at what cost? The Lancet, 377, 1523-1538. Bischoff, A. & Denhaerynck, K. (2010). What do language barriers cost? An exploratory study among asylum seekers in Switzerland. BMC Health Services Research, 10, 248-254. Bollini, P., Pampalloma, S., Wanner, P. & Kupelnick, B. (2009. Pregnancy outcome of migrant women and integration policy: A systematic review of the international literature. Social Science & Medicine, 68, 452-461. Cacciani, L., Asole, S., Plo, A., Franco, F., Lucchini, R. De Curtis, M., Die Lallo & D. Guasticchi, G. (2011). Perinatal outcomes among immigrant mothers over two periods in a region of central Italy. BMC Pubic Health, 11, 294-304. David, M., Pachaly, J. & Vetter, K. (2006). Perinatal outcome in Berlin (Germany) among immigrants from Turkey. Archives of Gynecology and Obstetrics, 274, 271-278. Department of Health (2007). Review of the Health Inequalities Infant Mortality PSA Target. London: Department of Health. http://bit.ly/z3LkBS Ekéus, C., Cnattingius, S., Essen, B. & Hjern, A. (2001. Stillbirth among foreign-born women in Sweden. European Journal of Public Health, 21, 788-792. Essén, B., Bödker, B., Sjöberg, N.O., Langhoff-Roos, J., Greissen, G., Gudmundsson, G. & Östergren, P.O. (2001). Are some perinatal deaths in immigrant groups linked to suboptimal perinatal care services? British Journal of Obstetrics and Gynaecology, 109, 677-82 Frøen, J.F., Cacciatore, J., McClure, E.M., Kuti, O., Jokhio, A.H., Islam, M. & Shiffman, J. for The Lancet’s Stillbirths Series steering committee (2011). Stillbirths: why they matter. The Lancet, 377, 1353-1366. Gagnon, A.J., Zimbeck, M., Zeitlin, J., and the ROAM Collaboration (2009). Migration to western industrialized countries and perinatal health: A systematic review. Social Science & Medicine, 69, 934-946. Gissler, M., Alexander, S., Macfarlane, A., Small, R., Stray-Pedersen,B., Zeitlin, J., Zim-

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beck, M. & Gagnon, A. for the ROAM collaboration (2009). Stillbirths and infant deaths among migrants in industrialized countries. Acta Obstetricia Gynecologica Scandinavica 88, 134-148. Goedhart, G., van Eijsden, M., van der Wal, M.F. & Bonsel, G.J. (2008). Ethnic differences in preterm birth and its subtypes: the effect of a cumulative risk profile. British Journal of Obstetrics & Gynecology, 115, 710-719. Hamamy, H. (2011). Consanguineous marriages. Preconception consultation in primary health care settings. Journal of Community Genetics, online first DOI 10.1007/ s1287-011-0072-y İçduygu, A. & Sert, D. (2009). Country Profile Turkey, Focus Migration, 5, 1-9. http:// focus-migration.hwwi.de/uploads/tx_wilpubdb/CP_05_Turkey_2009.pdf IOM (2009). Maternal Child Healthcare for Immigrant Populations. Background Paper. Brussels: International Organization for Migration. http://bit.ly/xEy38s Karlsen, S., Say, L., Souza, J.P., Hogue, C.J., Calles, D.L., Gülmezoglu, A.M. & Raine, R. (2011). The relationship between maternal education and mortality among women giving birth in health care institutions: Analysis of the cross sectional WHO Global Survey on Maternal and Perinatal Health. BMC Public Health, 11, 606-616. Kültürsay, N. (2011). The status of women and of maternal and perinatal health in Turkey. Turkish Journal of Pediatrics, 53, 5-10. Malin, M. & Gissler, M. (2009). Maternal care and birth outcomes among ethnic minority women in Finland. BMC Public Health, 9, 84-98. Milewski, N. (2007). First child of immigrant workers and their descendants in West Germany: Interrelation of events, disruption, or adaptation? Demographic Research, 17(29), 859-896. http://www.demographic-research.org/Volumes/Vol17/29/17-29. pdf Ministry of Health, Turkey (2010). Health transformation program in Turkey. Progress Report September 2010. Ministry of Health Publication No 807, Ankara. http://bit. ly/zfBXYS Rajaratnam, J.R., Marcus, R.J., Flaxman, A.D., Wand, H., Levin-Rector, A., Dwyer, L., Costa, M., Lopez, A.D. & Murray, C.J.L. (2010. Neonatal, postneonatal, childhood, and under-5 mortality for 187 countries, 1970-2010: a systematic analysis of progress towards Millennium Development Goal 4. The Lancet, 375, 1988-2008. Recape, J., De Spiegelaere, M., Alexander, S., Dramaix, M., Buekens, P. & Haelterman, E. (2010). High perinatal mortality rate among immigrants in Brussels. European Journal of Public Health, 20(5), 536-542. Schulpen, T.W., van Wieringen, J.C. & van Brummen, P.J. (2006). Infant mortality, ethnicity, and genetically determined disorders in The Netherlands. European Journal of Public Health, 16, 1-4. Sievers, E. (2009). Familien mit Migrationshintergrund – aktuelle Daten zur Prävention und Gesundheit in Schwangerschaft und Kleinkindalter. In: Gesundheit von Kindern und Jugendlichen in Familien mit Migrationshintergrund (pp. 53-62). Berlin: Beauftragte der Bundesregierung für Migration, Flüchtlinge und Integration.

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Small, R., Gagnon, A., Gissler, M., Zeitlin, J., Bennis, M., Glazier, R.H., Haelterman, E., Martens, G., McDermott, S., Urquia, M. & Vangen, S. (2008). Somali women and their pregnancy outcomes postmigration: data from six receiving countries. British Journal of Obstetrics and Gynecology, 115, 1630-1640. Surén, P., Grjibovski, A. & Stoltenberg, C. (2007). Inngifte i Norge – Omfang og medisinske konsekvenser, abstract in English language: Consanguineous marriage in Norway – Prevalence and medical consequences. Oslo: Folkehelseinstituttet. Troe, E.-J.W.M, Bos, V., Deerenberg, I.M., Mackenbach, J.P. & Joung, I.M.A. (2006). Ethnic differences in total and cause-specific infant mortality in the Netherlands. Paediatric and Perinatal Epidemiology, 20, 140–147. UN (1989) Convention on the Rights of the Child. New York: United Nations. http:///2. ohchr.org/english/law/crc.htm Urquia, M.L., Frank, J.W., Moineddin, R. & Glazier, R.H. (2010a). Immigrants duration of residence and adverse birth outcomes: a population-based study. British Journal of Obestetrics and Gynecology, 117, 591-601. Urquia, M.L., Glazier, R.H., Blondel, B. Zeitlin, J., Gissler, M., Macfarlane, A., Ng, E., Heaman, M., Stray-Pedersen, B. & Gagnon, A. (2010b). Role of Ethnicity, Region of Origin and Destination. Journal of Epidemiology & Community Health, 64, 243251. Villadsen, S.F., Mortensen, L.H., Andersen, A.M.N. (2009). Ethnic disparity in stillbirth and infant mortality in Denmark 1981-2003. Journal of Epidemiology & Community Health, 63, 106-112. Villadsen, S.F., Sievers, E., Andersen, A.M.N., Arntzen, A., Audard-Mariller, M., Martens, G., Ascher, H. & Hjern, A. (2010). Cross-country variation in stillbirth and neonatal mortality in offspring of Turkish migrants in northern Europe. European Journal of Public Health, 20, 530-535. Villar,J., Papageorghiou, A.T., Knight, H.E., Gravett, M.G., Iams, J., Waller, S.A., Kramer, M. Culhane, J.F., Barros, F.C., Conde-Agudelo, A., Bhutta, Z.A. & Goldenberg, R.L. (2011). The preterm birth syndrome: a prototype phenotypic classification. American Journal of Obstetrics and Gynecology, published online ahead of print. Wolff, H., Epiney, M., Laurenco, A.P., Costanza, M.C., Delieutraz-Marchand., J., Andreoli, N., Dubuisson, J.B., Gaspoz, J.M. & Irion, O. (2008. Undocumented migrants lack access to pregnancy care and prevention. BMC Public Health, 8, 93-102. WHO (2005). The World Health Report 2005. Make every mother and child count. Geneva: World Health Organization. http://www.who.int/whr/2005/whr2005_en.pdf WHO (2010). How health systems can address health inequities linked to migration and ethnicity. Copenhagen: World Health Organization Regional Office for Europe. http://www.euro.who.int/__data/assets/pdf_file/0005/127526/e94497.pdf PMNCH (2011). A Global Review of the key interventions related to reproductive, maternal, newborn and child health (RMNCH). Geneva: The Partnership for Maternal, Newborn and Child Health. http://bit.ly/AkST1l

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Chapter 13

Ethnic differences in the perception and description of menopausal symptoms in women aged 45-60 in Berlin

Theda Borde & Matthias David

1. Introduction Since the controversy surrounding the risks and benefits of menopausal hormone therapy was first triggered by the publication of the results of the Women’s Health Initiative Study (Rossouw et al., 2002), the subject of female menopause has increasingly moved from a private and medical level to a public and health policy public level. In Germany, too, research has been devoted increasingly to this subject. The menopause is a biological fact in the life of every woman. A number of symptoms may accompany it. They are attributed to the changes to a woman’s hormone balance and are subjectively perceived and experienced differently. Various factors such as the ‘cult of youth’ prevalent in society, the many options for treating symptoms, advertising by the pharmaceutical industry and the presence of the topic in the media have – at least in Western countries – contributed to popularisation of the subject of the menopause in recent decades. It can be assumed that the perception of symptoms and the need for treatment have also been influenced by the medical system. However, to date there have not been any studies in Germany which specifically include immigrants and the influence of ethnicity, social and cultural factors on the way in which the menopause is experienced, and which examine how symptoms are dealt with (Genazzani et al., 2006; Robert Koch Institut, 2008). Our study was conducted in Berlin. We examined, among other issues, whether menopausal complaints among women are universal or whether migration, ethnic-

Ethnic differences in the perception and description of menopausal symptoms

ity and/or the socio-cultural context influence how the menopause is experienced. Our sample included women aged 45-60 years from Germany (n=406), Turkey (n=254) and Asian countries (China, Korea and Japan, n=218). Their perception of symptoms was explored using the Menopause Rating Scale II (MSR II). In addition, we conducted problem-centred interviews with a total of 127 women. 2. Menopause symptoms in an international and transcultural comparison International and transcultural studies show that the way in which the menopause is experienced is influenced not only by biological, socio-demographic and psychosocial factors, but also by the ethnicity of the women and their socio-cultural context (Kristiansen et al., 2007; Binder-Fritz, 2005; Melby et al., 2005, Kaufert, 1996; Lock, 1994). For example, Obermeyer et al. (2007), who questioned women in Beirut, Rabat, Madrid and Massachusetts in order to compare the perception of menopause symptoms, demonstrated that the symptoms and frequency of occurrence varied depending on the location of the women surveyed, although hot flashes occurred everywhere. The most frequent symptoms were joint pain, exhaustion, irritability and sleep disturbances. Women who had their last period a year or more ago reported more severe symptoms in each case (Obermeyer et al., 2007). The SWAN study (Study of Women’s Health Across the Nation) established clear interethnic differences in the frequency of vasomotoric complaints for the USA: in the sample, 46.7% of Afro-Americans, 31.7% of white Americans, 35.9% of Latin Americans, 21.3% of Chinese and 18.3% of Japanese reported symptoms such as hot flashes, sweating or shivering. It was also demonstrated that the occurrence of the symptoms ‘hot flashes’ and ‘palpitations’ increases with a decreasing level of education. White American women reported sleep disturbances and psychosomatic symptoms much more frequently than women in the comparison groups (Gold et al., 2000). Further international studies show that hot flashes occur much less frequently among women in Asia. Possible explanations for this are the influence of the climate – the heat regulation mechanism could be different – or genetic factors. Cultural influences, which lead to a different significance of the menopause, are also hypothesised. In Turkey only a small number of studies are available on how the menopause is experienced and they frequently relate to very small populations. Whilst women in Germany and in other industrialised countries experience menopause at an age of between 48 and 55 years on average, and half of women reach it at the age of around 51 years (Schneider, 2003), the average age of menopause for women in Central Anatolia is 45.8 years (Biri et al., 2005) and for women in rural West Anatolia 44.4 years (Discigil et al., 2006). Women in Turkey rarely sought medical assistance during the menopause and stated that they do not know much about it. A study by Ergöl & Eroğlu (2001) confirms the low level of knowledge about the

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menopause. Symptoms occurring tend to be assigned to ‘growing older’ rather than to the menopause. Women with a higher level of education were the only group to be better informed about this subject. Özkan et al. (2005) found that women in Turkey experienced the menopause as a natural, unavoidable event. As the rising age of the women often goes hand in hand with increasing respect within the family and society, the menopause becomes easier to accept. Vasomotoric complaints were reported more frequently by postmenopausal women than by pre-/perimenopausal women. Women with a higher level of education reported fewer menopausal symptoms than women with a lower level of education (Özkan et al., 2005). Comparative cultural studies indicate that the perception of menopause is influenced by the social standing of a woman and the positive or negative assessment of this phase of life in a particular socio-cultural context. In addition, it can be surmised that social taboos surrounding the subject of menopause may be ‘translated’ to other types of complaints and that women learn to react to the menopause in a certain culture-dependent way. The move to a different socio-cultural context (such as migration) may have an influence (David & Kentenich, 2002; Borde & David, 2004). This chapter focuses both on the results of the questionnaire survey and on the qualitative findings of our study. 3. Questionnaire Survey 3.1. Methods We employed a questionnaire covering aspects such as socio-demographic and migration-related data, menopausal symptoms based on the Menopause Rating Scale II (MRS II) and the extent of knowledge and use of hormone therapy. The study participants were initially enrolled by a representative sampling procedure, and were sent questionnaires by post. As the response rate in this approach was very low, especially among the target group of migrants, a supplementary second survey phase followed in which women were enrolled by a ‘snowball sampling method’ with support from multipliers, and were questioned orally in standardised interviews based on the questionnaire (Borde et al., 2007; David et al., 2008). This procedure proved to be extremely time-consuming but was successful in view of the ability to reach immigrants and secure their participation. 3.2. Results 3.2.1. Socio-demographic aspects and menopausal status of women in the sample Fully completed questionnaires were provided by 418 German women, 264 immigrants from Turkey and 280 immigrants from Asian countries (China, Korea and Japan) aged 45-60 years. There was considerable variation in the social situation of the groups according to ethnicity. The majority of immigrant women had lived in

Ethnic differences in the perception and description of menopausal symptoms

Berlin for more than 20 years. Most women from Asian countries had migrated to Germany as qualified skilled workers, while the women from Turkey had come to Germany as unskilled workers or family members. This was reflected in the much higher level of education, greater participation in the labour market and better knowledge of the German language of the Asians. While the women from China, Korea and Japan had the highest level of education and the group of native German women surveyed had the widest variance of educational qualifications, two-thirds of the women from Turkey had only completed primary school or had not attended school at all. Compared with the German and Asian women, the women from Turkey were much less satisfied with their lives – in particular with their occupational situation, their income and their health. The analysis of the menopausal status of the sample showed that 32.8% of the German women compared 36.1% of the women from Turkey and 33.6% of the women from Asia reported a natural (i.e., non-surgical or drug-induced) postmenopause (defined as at least one year after the last menstrual period). Noticeable was that 17.2% of the German women compared to 31.1% of the Turkish and 18.3% of the Asian women in the study sample had undergone hysterectomy. 3.2.2. Menopausal symptoms The women were asked to assess the perceived intensity of all 11 complaints (currently or in the last 7 days) listed in the Menopause Rating Scale (MRS II) list of symptoms. Ratings ranged from 0 = none to 10 = very strong complaint. Ratings from 6-10 were combined and defined as strong/severe symptoms. The most frequent menopausal symptoms of the women in the sample were irritability, joint/ muscle complaints, hot flashes, sleep disturbances and exhaustion. Frequencies were independent of ethnicity and socio-demographic factors. However, the women of Turkish origin reported severe symptoms for all eleven symptom scales of the MRS II significantly more frequently than the German and the Asian women (Table 1). A comparison of the spectrum of symptoms between women in the pre/perimenopausal and the postmenopausal phase showed that symptoms increase in the postmenopause. It also revealed some significant differences between the comparison groups. For example, the proportion of women who did not report any menopausal symptoms decreased in a pre/post menopausal comparison from approximately 71% to 53% among Asian women, from 55% to 53% among German women and from 18% to 15% among women of Turkish origin. 3.2.3. Knowledge about menopausal hormone therapy The women surveyed generally felt ill-informed about the benefits and risks of hormone therapy, though the level of knowledge increased with a rising level of education. About 50% of German women, but only 40% of Asian women and less than 20% of immigrants of Turkish origin knew about the results of the Women’s

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Table 1. Percentage of women with strong/severe symptoms strong/severe symptoms

hot flashes

native German women % (N=406)

immigrants from Turkey % (N=261)

immigrants from Asia % (N=254)

14.6

44.9

5.9

4.2

25.0

2.3

sleep disturbances

20.0

43.1

9.7

depressive moods

12.0

41.7

8.2

irritability

10.8

49.6

6.2

anxiety

7.6

36.5

3.9

exhaustion

8.8

45.3

10.9

sexual problems

10.1

12.9

19.7

urinary problems

5.7

22.7

7.8

vaginal dryness

6.4

16.6

16.9

17.1

52.6

18.3

heart complaints

joint and muscle complaints

Health Study. 66% of Asian women compared to 52% of German women and 45% of women of Turkish origin had not used any menopausal hormone therapy to date. The previous or current rate of use of hormone therapy was closely connected to the severity of symptoms and visits to doctors on account of symptoms (cf. David et al., 2007; Borde et al., 2007; David et al, 2008; Borde et al., 2008). 4. Qualitative study 4.1. Methods The qualitative approach served to gain insights that could not be obtained using quantitative methods. Problem-centred interviews were conducted with a total of 127 women aged 45-60 years, 42 of whom came from Germany, 44 from Turkey and 41 from China, Japan or Korea. This access enabled an individual, in-depth clarification of how the menopause is experienced in a transcultural comparison. Interview partners were identified in the framework of the larger questionnaire survey and through female key persons working in women’s, migrant and local community centres. To achieve maximum variance and as broad a sample as possible, various socio-demographic factors were considered when picking interview partners from every ethnic group.

Ethnic differences in the perception and description of menopausal symptoms

The face-to-face interviews lasted approximately 30 minutes. They were based on an interview guideline and were carried out by three trained female interviewers in German or – if requested – in Turkish. The interviews took place either at the office of the research group, in a private setting, or in migrant, women’s or local community centres. Whereas the interviews with women from Asian countries could all be held in German, the majority of women from Turkey preferred to be interviewed in Turkish. Following a brief explanation of the purpose of the study and the structure of the interview, the actual interview started and was recorded on tape. Tape recordings were transcribed verbatim in order to analyse the content. The 40 interviews held in Turkish were directly translated by a bilingual employee and written down in German. The extensive text material was analysed in accordance with the qualitative content analysis method described by Mayring (2007). On the basis of the transcripts, categories were developed to structure the content and to allow a comparative analysis. The text material was compressed based on gradual evaluation steps, and this allowed constant control of the relationship between theory and data. 4.2. Results 4.2.1. Description of the sample The majority of the immigrants from both regions of origin had come to Germany as young women in the 1970s and had lived in Berlin for around 30 years on average. Like the sample of the quantitative study, the women from Asia proved to have a much higher level of education. The majority of German and Asian women questioned were employed, whereas most of the women from Turkey were unemployed or incapable of work at the time of the interview. However, most of them had performed manual work in various sectors of industry for extended periods. While most of the immigrants interviewed were married or had a partner, almost half of the German women were single. 4.2.2. Menopausal symptoms: similarities and differences The interviewees in all three ethnic groups described similar menopausal symptoms, in spite of pronounced differences between the groups with regard to education and social situation,. Vasomotoric-vegetative symptoms such as hot flashes, sweating or shivering were frequently reported, but also psychological symptoms such as depressive mood fluctuations, tenseness, irritability, reduced energy, sleep disturbances, a decline in sexual interest and also further symptoms such as weight increase/figure changes, palpitations, pain and listlessness. Hence, the range of symptoms associated with the menopause does not differ between women of different socio-cultural origins in this sample; these symptoms appear to be universal accompaniments of the menopause. However, when the answers given by the three groups in the interviews are compared, it is noticeable that German women and women of Turkish origin are

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more likely to report being severely affected by menopausal symptoms, while women of Asian origin initially played down their symptoms. When specifically asked, however, some then described symptoms just as clearly as women from the other groups. A Japanese woman, when asked whether all women in the menopause experience symptoms, pointed to differences in dealing with or reporting symptoms and to specific forms of stigmatisation of illness in her own cultural context: It’s a completely different mentality. For example, in Germany you say ‘How are you?’ and the German person starts [telling you] everything, almost everything, about their health problems. In Japan [it’s] secret, they don’t say it. That’s why if we have menopause-related problems we’d still say: ‘Thank you, I’m fine, no problem.’ So I don’t know if it really is a problem or not. Illness isn’t good in Japan. You don’t talk about it. If someone is seriously ill in the family then it’s difficult for the children to get married. It’s also difficult with work. When I was a child everyone always had to be healthy. If you had problems or a disabled child [that meant] shadow – not bringing it to light.

The way of phrasing this and the way of talking about certain symptoms is obviously culture-specific. This qualitative difference in describing symptoms, which was identified by means of problem-centred interviews with women of different ethnicity, is illustrated by quotes from the interviews in the following. Vasomotoric complaints are described relatively consistently by all three groups and are expressed in common terms such as ‘hot flashes’, ‘rising heat’, ‘sweating’ or ‘getting up at night covered in sweat’. Immigrants from Asian countries also describe these symptoms as ‘flying heat’. Women from Turkey sometimes describe their experience very vividly, for example ‘fire came over me’, ‘I burned’, ‘breaking out into a sweat’, ‘always having to change due to sweating’, ‘previously unknown cold came over me’ or ‘fever attacks’. In the interviews it was noticeable that immigrants from Turkey and also German women reported vasomotoric symptoms much more frequently than women from Asian countries and that they also described them more frequently with qualifying adjectives such as ‘strong’, ‘severe’ or ‘incredibly’. Psychological symptoms such as irritability and tenseness were also mentioned by all women in the three groups. Women from Turkey reported this condition most frequently and also used more varied terms for it. Whilst German women say that they are ‘more tense’, ‘irritable and unjust’, notice ‘a certain aggressiveness’ and say ‘I got very upset’, Asian immigrants report that they are ‘temperamental’ or have an ‘inner restlessness’. Immigrants from Turkey use the above terms and additionally report ‘strain’, ‘nerves’, ‘being extremely stressed’, ‘seeing black’, ‘getting annoyed about everything’, ‘getting angry’ and ‘losing self-control’. Mood fluctuations are described in a similar way and vary from ‘up and down’, ‘unbalanced’, ‘different emotional states’ to ‘depressive symptoms’ and ‘melancholy’. Women of Turkish

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origin additionally expressed ‘crying attacks’ and the term ‘sikinti’ as typical menopause symptoms. They usually elaborated on the term with words such as ‘since my periods stopped I no longer feel as well’, ‘great uneasiness’, ‘constriction’, ‘oppressive, uneasy feelings’ or pictures like ‘you no longer fit in your apartment’. German and Asian women complain much more frequently of reduced energy, which is probably related to culture-specific role expectations, but also to their specific situation as women in employment. Only a single statement in this category could be assigned to immigrants from Turkey, but a large number of German women said that they ‘no longer felt as capable’, ‘no longer felt as resilient’, ‘often felt listless and washed-out’, ‘felt detached’, ‘physically impaired’ and ‘lethargic’ and that ‘everything is too much’ for them. The women from Asia reported ‘being tired more often’ and ‘more forgetful’, complained about ‘declining activity’ and that the body ‘no longer goes along with things’. The much more frequent emphasis on declining mental performance among Asian interviewees was striking, and was expressed in statements like “I used to know patient names, dates of birth etc. like a computer. Now I no longer do” or “I can’t concentrate for longer than 30 minutes”. One aspect reported by women in all three comparison groups as a symptom of menopause is a change in their sexuality. While the list of symptoms in the MSR II only referred to sexual problems with vaginal dryness as a possible further indication in this area, the interviews offered an opportunity to find out more about the type of sexual problems and attempt a comparative analysis. The majority of women mentioned the ending of menstruation and thus the end of contraception problems as a positive aspect of menopause. Nevertheless, sexuality seems to play a subordinate role in this specific phase of life of the women. For example, several women in all three groups spontaneously complained that the menopause went hand in hand with a loss of their interest in sexuality. An interviewee of Turkish origin summarises the physical and mental changes and emphasises the taboos in talking about sexuality: When the woman is in this phase it [sexuality] becomes too much. You’ve reached a strange border. Of course these changes to your own body also make you sad. There’s no longer the excitement – and it hurts and burns. That’s what I’ve often experienced. But I couldn’t tell anyone then, not even my husband. It was an absolute taboo. Yes, very ayip [it’s not the done thing]. You can’t say it.

Especially women in long-term relationships tend to report strains and tension in the relationship connected to with their own ‘lack of interest in sex’ or ‘loss of libido’. Regardless of the origin of the women, in the context of sexuality and menopause the ‘male menopause’ is also a subject of discussion. Aspects relating to declining sexual potency in particular are brought up directly or indirectly. The women not in a committed relationship – this predominantly applied to German women – often

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complained that potential partners showed declining sexual interest in menopausal women, which lowered the chances of starting a new relationship. However, women who entered into a new relationship during menopause reported positive changes to their sexuality and their mental wellbeing. Several Asian women mentioned that the relationship with their husbands changed in a positive way through the shift from a sexual to a more emotional relationship. Women of Turkish origin often reported worries about sexuality and fertility as an area of specific strain. Heart problems expressed as ‘blood pressure’, ‘cardiac flutters’, ‘extreme palpitations’, ‘irregular pulse’ or ‘heart palpitations in the night’ are associated with the menopause much more frequently by German women and immigrants from Asian countries than by immigrants from Turkey. Sleep disturbances were described by all comparison groups to the same extent and in a very similar way. They comprised ‘problems falling asleep’, ‘not sleeping through’, ‘sleeplessness at night’, ‘waking up early in the morning and not being able to go back to sleep’, ‘bad nights’ or expressions such as ‘suddenly jumping up from sleep at night’. Changes to body weight are reported by all three groups as a symptom of the menopause, with the women first and foremost complaining about unwanted ‘fat accumulation’, ‘weight gain’ and ‘figure changes’. No differences specific to ethnicity could be discerned either with regard to the frequency of reporting the symptom or the way in which it was described. In addition to the symptoms described and the physical and psychological changes reported that are largely comparable with the symptoms of MSR II, some women in all three groups reported further typical symptoms of the menopause. For example, some women attributed different types of pain to the menopause. Whilst the Asian interviewees only reported ‘headaches’, German women also complained about ‘migraine’, ‘back pain’ and ‘abdominal tension’, with women from Turkey additionally describing ‘general pain’. Further menopausal symptoms experienced by some German women and some women of Turkish origin that are not listed in MSR II include ‘feelings of suffocation’, ‘not getting enough air’, ‘breathing difficulties’ and ‘flushing’. Some Asian women reported ‘stiff shoulders’, ‘dry eyes’ or ‘dry skin’ and some women of Turkish origin also assigned symptoms such as ‘the soles of the feet going to sleep’ and ‘increasing body hair’ to the menopause. 5. Discussion As no other studies exist in Germany to date that compare and examine immigrants’ and German women’s view of the menopause, we initially discuss some of the aspects that resulted from combining quantitative and qualitative survey and analysis methods. Both the evaluation of MSR II and the results of the interviews on menopausal symptoms indicate the universality of the known symptoms of the menopause.

Ethnic differences in the perception and description of menopausal symptoms

However, these are perceived much more strongly by immigrants of Turkish origin than by German and especially by Asian women. The increased respect described for women in Turkey within the family and society as a woman gets older, and acceptance of menopause as part and parcel of this (Özkan et al., 2005), does not seem to be confirmed among Turkish immigrants living in Germany. It can be assumed that their specific circumstances, which are characterised by social marginalisation as regards educational and employment opportunities, lead to greater dependence and therefore entail declining respect within the family and society. Not only socioculturally determined communication patterns but also the specific socioeconomic circumstances seem to influence how the menopause is experienced. While the menopausal symptoms reported by the women in interviews largely correspond to the 11 symptoms listed in MSR II as regards frequency of reporting, it is striking that joint and muscle complaints, which were given great significance by the women when naming symptoms in the questionnaire (approx. 17% of German women, 53% of women of Turkish origin and 18% of Asian immigrants reported strong/severe symptoms caused by joint and muscle complaints), were barely mentioned by the women questioned in the interviews. By contrast, changes in sexuality, and especially the subject of declining sexual interest, were given much more room by all comparison groups in the interviews than in the answers on the standardised questionnaire. The subject of sexuality was spontaneously brought up by the women in almost all interviews. However, only 10% of German women, 20% of women of Turkish origin and 13% of the Asian women had reported strong/severe problems in the MSR II form. Likewise, in the interviews it was possible to find out about symptoms that could not be recorded directly with MSR II, for example declining energy, a subject closely associated with the menopause by immigrants from Asian countries in particular. Even if, in the absence of a corresponding variable, the variable ‘exhaustion’ –which is perhaps comparable – is looked at instead, the relevance for immigrants from Asian countries is not apparent, as only 11% of Asian women compared to 45% of women of Turkish origin and 9% of German women reported strong/severe symptoms here. In the interviews it became clear that socio-cultural aspects influence the way in which women talk about menopausal symptoms, and that women from Asian countries needed to be more strongly encouraged before they described existing symptoms. Not just the degree of distress, but also the way in which the women express themselves when describing symptoms differs according to the women’s ethnicity. This shows that culture-specific factors obviously have an important influence. However, it must be noted that further important social factors, the influence of education and access to information were not considered in this qualitative analysis due to the uneven distribution in the samples. The results of our study show that qualitative and quantitative methods can complement each other very well. Wherever possible, this combination should be

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considered in research on healthcare and migration. Conducting interviews with immigrants not only has the usual methodical problems of qualitative research. In addition, there are problems of access and the language barrier, both of which must be overcome in view of the increasing socio-cultural and ethnic variety in Europe. The heterogeneous clientele with differing needs creates new challenges for health services and for research. As the study shows, it is possible to reach immigrants and ethnic minorities in surveys. It is necessary to achieve their participation in research in order to do justice to differences. With regard to first-generation immigrant women it is important to understand the complex interaction of social and cultural factors, of age, gender and their specific experience of migration. This will help to develop appropriate healthcare and counselling concepts, more effective information and communication strategies and finally more appropriate health care. Acknowledgements This is a revised and updated version of a chapter published in German in Qualitative Forschungsansätze in der psychosomatischen Frauenheilkunde edited by M. Neises and K. Weidner (2009), with the kind permission of Pabst Science Publisher. References Binder-Fritz, C. (2005). Transkulturelle Perspektiven auf die Wechseljahre: Körperbilder – Körperfragen. Journal für Menopause, 2, 16-21. Biri, A., Bakar, C., Maral, I., Karabacak, O & Bumin, A. (2003). Women with and without menopause over age of 40 in Turkey: consequences and treatment options. Maturitas, 50, 167-176. Borde, T. (2009). Migrantinnen im mittleren Lebensalter. Einfluss von soziokultureller Herkunft und Lebenslage auf das Erleben der Wechseljahre. In: Rásky, É. (Ed.) Gesundheit hat Bleiberecht. Migration und Gesundheit (pp. 175-179). Wien: WienFakultas-Verlag. Borde, T., Boral, Ş., Schalinski, A., David, M. (2008). Haben Kultur und Migration einen Einfluss auf den Umgang mit den Wechseljahren? In: Borde, T. & David, M. (Eds.) Frauengesundheit, Migration und Kultur in einer globalisierten Welt (pp. 4371). Frankfurt/Main: Mabuse-Verlag. Borde, T., Boral, Ş., Schalinski, A., David, M. (2007). Does migration have an impact on the perception of menopause and coping with symptoms? In: ISPOG (Ed.) Proceedings of the 15th International Conference of Psychosomatic Obstetrics and Gynaecology (pp. 43-46). Wien: ISPOG.

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Borde, T. & David, M. (2004). Sind die Wechseljahre ein kulturspezifisches Syndrom? Forschungsergebnisse sowie Anmerkungen zu Informiertheit und Bedürfnissen von Migrantinnen in der gynäkologischen Praxis. In: Jahn, (Ed.) Wechseljahre multidisziplinär: was wollen Frauen – was brauchen Frauen (pp. 83-96). St. Augustin: Asgard. Borde, T., Schalinski, A., David, M., (2007). Vor und nach der Major-Deklaration 2003 – Anwendungsverhalten, Informiertheit und psychosoziale Daten zu Hormonersatztherapie und Wechseljahren bei chinesischen, japanischen, koreanischen und türkeistämmigen Migrantinnen im Vergleich zu deutschen Frauen in Berlin. Schlussbericht zum Forschungsprojekt. Teilprojekt  3 des Verbundprojektes: Assessment of Benefits and Risks of Hormone Therapy (HT): Health Care Needs and Health Care Services for Women in Germany. Berlin: Bundesministerium für Bildung und Forschung (ref. no.: 01 KH 04 03). Borde, T., (2005). Repräsentation ethnischer Minderheiten in Studien und Gesundheitsberichten, Erfordernis, Chancen und Nebenwirkungen. In: Borde, T. & David, M. (Eds.) Kinder und Jugendliche mit Migrationshintergrund. Lebenswelten, Gesundheit und Krankheit (pp. 267-287). Frankfurt/M: Mabuse. David, M. & Kentenich, H. (2002). Das Klimakterium – ein kulturgebundenes Syndrom? Frauenarzt, 43, 280-290. David, M., Schalinski, A. & Borde, T. (2008). Soziokulturelle Aspekte der Menopause und der menopausalen Hormontherapie. In: Gesundheitsberichterstattung des Bundes. Hormontherapie bei (post-)menopausalen Frauen in Deutschland 2007 (pp. 5763). Berlin: Robert Koch-Institut. David, M., Schalinski, A., Borde, T. (2007). Vor und nach der WHI-Studie: Umgang und Einstellung zur HRT und Wechseljahren bei deutschen Frauen, asiatischen und türkeistämmigen Migrantinnen im Vergleich. Archives of Gynecology and Obstetrics, 4, 436-437. Discigil, G., Gemalmaz, A., Tekin, N., Basak, O. (2006). Profile of menopausal women in west Anatolian rural region sample. Maturitas, 55, 247-254. Ergöl, Ş. & Eroğlu, K. (2001). Klimakterik Dönemdeki Kadinlarin Sağlik Bakımlarına İlişkin Bilgi, Uygulama ve Tutumları. Sağlık ve Toplum, 11(1), 49-57. Genazzani, A.R., Schneider, H.P., Panay, N. & Nijland, E.A. (2006). The European Menopause Survey 2005: women’s perceptions on the menopause and postmenopausal hormone therapy. Gynecological Endocrinology, 22, 269-375. Gold, E.B., Sternfeld, B., Kelsey, J.L., Brown, C., Mouton, C., Reame, N., Salamone, L. & Stellato, R. (2000). Relation of demographic and lifestyle factors to symptoms in a multi-racial/ethnic population of women 40-55 years of age. American Journal of Epidemiology, 152, 463-473. Kaufert, P. (1996). The social and cultural context of menopause. Maturitas, 23, 169180. Kristiansen, M., Mygind, A., Krasnik, A. (2007). Health effects of migration. Danish Medical Bulletin, 54, 46-47.

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Lock, M. (1994). Menopause in cultural context. Experimental Gerontology, 29, 307317. Mayring, P. (2007). Qualitative Inhaltsanaylse. Grundlagen und Techniken. Basel/Weinheim: Beltz. Melby, M.K. (2006). Climacteric symptoms among Japanese women and men: comparison of four symptom checklists. Climacteric, 9, 298-304. Obermeyer, C.M., Reher, D. & Saliba, M. (2007). Symptoms, menopause status, and country differences: a comparative analysis from DAMES. Menopause, 14(4), 788797. Özkan, S., Alatas, E., Zencir, M. (2005). Women’s quality of life in the premenopausal and postmenopausal periods. Quality of Life Research, 14, 1795-1801. Robert Koch-Institut (Ed.) (2008). Gesundheitsberichterstattung des Bundes. Hormontherapie bei (post-)menopausalen Frauen in Deutschland 2007. Berlin: Robert Koch-Institut. Rossouw, J. E. et al, (2002). Risks and benefits of estrogen plus progestin in healthy postmenopausal women’s principal results from the Women’s Health Initiative randomized controlled trial. Journal of the American Medical Association, 288, 321–333. Schneider, H.P.G. (2003). Klimakterium. In: Dudenhausen, J.W., Schneider, H.P.G. & Bastert, G. (Eds.) Frauenheilkunde und Geburtshilfe (pp. 40-58). Berlin, New York: Gruyter.

Developing an integrated approach for research and policies on migration, health and ageing

Chapter 14

Developing an integrated approach for research and policies on migration, health and ageing

Ana Alexandre Fernandes & Beatriz Padilla

1. Introduction Most developed countries are facing the fact of steadily increasing longevity and insufficient institutional support to meet the needs of the elderly. People are now reaching older ages and belong to cohorts that are more numerous and surviving in higher proportions. Moreover, there is a gender gap in mortality as women outlive men. This contrasts with the worse health conditions that women faced as, along their lives, they had less access to benefits and material resources and lower levels of literacy. In the particular context of the ageing of European populations, older migrants appear as a new and growing target group. This is the consequence of natural ageing of the first waves of immigrants who came mainly as guest workers but – contrary to the expectations of governments – stayed. In addition, it is due to family reunification of more recent migrants who have brought their parents as dependants. Moreover, older EU residents from Northern Europe retire to Southern European countries. Thus, different profiles of older migrants living in European societies coexist. The living conditions during their working life, and the national environments in which they resided, are characterised by significant differences in sociocultural and political terms; they are important determinants of the levels of health and wellbeing of migrants in later life. Scientific research on ‘ageing studies’ has so far not paid enough attention to migration issues, but this is rapidly becoming a new research field. Moreover, migration studies have not focused on issues pertaining to older and ageing migrants either. Instead, scholars have been concentrating more on topics that need immediate attention including the different waves of incoming migrants, second gen-

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erations, cultural differences, and integration in the host countries. However, as migrants settle in the host country, start a family and adapt to a new life, their interest in and motivation for returning declines. Many older migrants will stay in the country where they have lived all their active lives, to which they have contributed, where they have their families, where they are familiar with health system and where health care is better. In this chapter we put forward an integrated approach to research and intervention by framing specific issues on migration and health along the ageing process. It is essential to define the main concepts and draw up a review of existing literature in order to develop a specific approach to this issue. Regarding ageing, it is essential to perceive the changes that have occurred in Europe from the standpoint of demography, which should shape the way we look at older people. In terms of social security and health – the key issues of social policies regarding older people including migrants – no universal response has been adopted; on the contrary, diverse solutions have been found across Europe. These concerns go beyond the scope of this chapter. We will focus on conceptual and theoretical formulations as a first step, and as a first attempt to set the issue for research and policy agendas. 2. Conceptual approaches to migration, health and ageing The concept of ‘migrant’ represents different categories of people, in terms of socioeconomic status, gender, age, culture, religion, nationality and reasons for migrating. Migrants also include family members who have joined the first-comer, and the term is sometimes extended to cover the descendants of migrants who have settled in the host country – in some cases for more than one generation. Moreover, with the increasing mobility of people and the intensification of travelling, forms of migration today include circular migration, return migration, and displacement. Recent research even examines international tourism and travelling (Fernandes & Pereira Miguel, 2009). These different profiles clearly call for a categorization that involves a sociological point of view to approach ageing migrants and health issues. As Hunter (2010) states, “a dominant representation of the post-World War II wave of labour migration to Europe was the youth, if not agelessness, of the migrant workers”. For a long time the image of the immigrant remained immutable, ‘forever young, healthy, never tired worker’, accompanied by the ‘invisibility’ of older people. This invisibility is due, in part, to the frequent return to the country of origin, particularly by the migrants who did not adjust or resisted social and cultural integration. At present, we have reached a stage in which the large cohorts of immigrants that arrived in the sixties and seventies, especially in northern and western Euro-

Developing an integrated approach for research and policies on migration, health and ageing

pean countries, are reaching retirement age. Retirement with a set income (pension or retirement fund) could be an appropriate time to return to the country of origin, as desired along the active cycle of life. Frequently, however, factors have arisen in the life of older migrants which challenge the original idea of return. For instance, new family arrangements, such as children and grandchildren already settled and established in the host country, affect plans and aspirations. Returning or not returning becomes a stressor for older migrants and their families, as many of them have maintained activities and commitments that connect them to people and places outside the borders of nation-state in which they reside. The myth of return still marks different generations of migrants over time. Sayad’s reflection based on the case of Algerian immigration pinpoints to the double burden of return and work (Sayad, 2006). He considers that immigrants exist mainly and almost exclusively in relation to their work, but the condition as a worker is always provisional as it is their identity as an immigrant. This dual condition is reflected in the idea and desire of return that never leaves them. In this sense, immigrants are always the subject of a provisional status reinforced by precarious living conditions (housing, family, language). This situation may be more precarious than expected due to the idea of return, that holds them back from settlement, which would have implied more investment in better housing, health, retirement plan, among others. So, even if labour is what gives rise to the immigrant, the end of work or retirement abolishes the justification of his or her life as a migrant. The absence of work delegitimizes the idea of the labour migrants, which has an impact on migrants’ lives, on their own perception and on how society views them. At the same time, the image constructed around ‘migrants of an old age’ in a host country, has been conceptualised as ‘illegitimate elderly’ (Attias-Donfut et al., 2005) as if they could not have aged and lived in that country. In this case, the authors argue that migrants hold emotional roots to the country of origin, to which, however, they will not return. So they feel doubly marginalised (here and there), experiencing a double exclusion (Témime, 2001). The image of the ‘illegitimate elderly’ is also embedded on the basic notion of ‘guest worker’ that defines migration as temporary but has proven inadequate for most migrants. Sayad interprets the non-return as a double break with the home community and the community of emigrants who have returned. A recent study in France (Attias-Donfut et al., 2005) revealed that ageing and the transition to retirement of immigrants should not reinforce the notion of an illegitimate retirement in old age. On the contrary, this study brings to light elements in favour of the idea of ‘integration through retirement’. The immigrants living in France studied here are ending their economically active life, which could imply return. However, those retired migrants who remain in France, by choice or necessity, are leading a stable life, and fewer of them consider leaving. Many older

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migrants show a higher adherence to France, less homesickness, and seem to have developed a more ‘peaceful’ identity than non-retirees facing their double anchoring identity. Along the same lines, Stoller and Longino (2001) discussed the ambivalence of going home or leaving home. The authors emphasise geographic patterns of migration within the United States, mainly analyzing the determinants and impact of later-life migration. Disability, widowhood and low income are some of the determinants of mobility during and after retirement. Studies on later-life migration have focused on the actions of those facing retirement age and older retirees, in which retirement migration is commonly identified as the first migration event in a sequence of moves undertaken by the elderly. This path is not adequate for older immigrants who have already moved from the countries of origin, but some findings may still shed some light on the issue. The life course model, a conceptual paradigm in studies on migration and retirement, is based on the idea that residential mobility often arises in response to particular life course events such as marriage, professional progress, and the departure of children from the household. Later-life migration has been linked to several life course events: retirement, the onset of disability, income decline, and the loss of a spouse (Walters, 2002). Retirement migration will continue to grow in the predictable future as a consequence of recent and important development of telecommunications and transport, increased home ownership, growing longevity and the adoption of individualistic lifestyles. Even though increased longevity has consequences at all stages of the life trajectory, the main impact of ageing relates to the final stage of the life cycle. In the case of retired people, their relationships with their children and the possibilities for active management of ageing are some of the factors that could enhance the mobilization of scarce resources for the last period of life. To evaluate the impact of increased longevity is to look at the growth of human survival considering the raising life expectancy at all ages. The effect of this phenomenon is reflected in the absolute and relative weight of individuals over a certain age level, which is a structural factor of modern societies. What are the main social changes inherent to ageing and life prolongation? How do these objectives change with ageing and have an impact on individual life paths? From the point of view of biographies, the focus is placed on the management of the life path, that is, the management of family relationships, career, occupation after retirement, and finally, of the difficulties of ageing. How do the elderly experience their weakness in the face of illness, isolation, relationships with children and neighbours? How do they manage their resources in order to overcome the difficulties that arise on the material level, in family and social relations, emotional wellbeing and on health?

Developing an integrated approach for research and policies on migration, health and ageing

An example of good practice developed in France to support older retired migrants from the Maghreb is a programme called SACORA (‘Grey Hair’) (Padilla, 2011). It identified two sets of problems, mainly differentiated by sex. In the case of men, the main problems were isolation and lack of support from the families and in the case of women, isolation and limited access to social security benefits. To compensate, SACORA promotes an active life, using empowerment tools and informational sessions that encourage autonomy and the enforcement of their rights (Padilla 2011). Another study (Machado & Roldão, 2010) focused on the patterns of settlement and ageing of several groups of elderly immigrants who remained in Portugal. They identified three groups: – The first group, elderly migrants from the EU, can be further subdivided into three different groups: (i) retired migrants (63% of EU elderly migrants are retired and live mainly in the Algarve region), (ii) immigrants with a highly qualified profile (business owners, technicians, employers) and (iii) people who migrated in the context of a partnership. – The second group tend to be older labour migrants of Luso-African origin who suffer more from poverty, are more dependent on their families, less educated, and live in Lisbon and the Setubal area. – The third group is more diverse; it includes Indians and Brazilians but the features are not very different: they tend to be more educated, business owners or professionals, among others. Statistical analysis indicated that 1.4% of the total population in Portugal are older immigrants. Out of these, 39% come from the EU-15 and 34% from PALOPs (African Countries of Portuguese Official Language). Most of the latter have come through processes of family reunification, and the majority are women. The authors argue that Portuguese history and decolonisation are essential to an understanding of the current situation (Machado & Roldão, 2010). The average age at death illustrates the prevailing inequalities among ethnic groups: while for EU citizens the average is 77 years, it is 78 years for the Portuguese, but only 74 years for immigrants from all PALOP countries, and 69 years for nationals from Guinea Bissau. Guineans immigrate more frequently invoking international treaties. Under these treaties, the so-called health agreements between Portugal and all PALOP countries, Portugal offers assistance to the African patients by covering complex treatments which are not available in the home country. In general, these evacuated patients come either using the health agreements formally with formal authorisations, or (not legally) as tourists. The patients and their families face a difficult situation during hospitalization and after discharge (Machado & Roldão, 2010; Henriques, 2010).

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The state of health of different groups of elder migrants varies widely. The aforementioned study (Machado & Roldão, 2010) identified different types of ageing according to socioeconomic status: (a) ageing in exclusion, (b) ageing in poverty but with family support or integration, c) ageing in poverty with societal support or integration, d) comfortable and active ageing with societal integration, and e) comfortable isolated ageing. These profiles could be useful for policy-making purposes for ensuring more tailored-made interventions with the elderly. 3. Gender, race and ethnicity as determinants of the health of elderly migrants Gender issues have a clear impact on people’s lives, including those of elderly migrants. Migration in itself is a gendered phenomenon (Hondagneu-Sotelo, 1994, 2001), impacting on men and women differently. Generally, women are more likely to have shorter or interrupted professional careers and, consequently, fewer social rights and lower income than men. This situation increases the risk of poverty and exclusion, mainly for women who are single parents, old, or work in low status jobs, as is often the case of migrant women, many of whom work in care services. As stated by Vlassoff and Garcia Moreno (2002:1713), “gender roles change over time and over an individual’s life stages. They also vary according to culture, but in practically all cultures women have a lower status than men and female roles are valued less than those of men”. Economic inequalities that are gender-related are linked to poverty in older age through a complex relationship. This relationship should be understood as the result of a sequence of actions and social experiences that – being differentiated by sex – begin in the general conditions of their social trajectory, culminating at an old age. Gender differentials in quality of life at older ages are decisively influenced not only by the impact of the life course and other individual-level factors, but also by the societal and the political context in which these personal histories take place. In this sense, Padilla stated that “considering gender through women’s own history allow us to perceive whether legislation, programmes and projects that target immigrants, and are thought to serve everyone, in the end achieve adequate results for both men and women, or if under the universal assumption of laws and programmes, there exists covert discrimination” (2007: 133). Hence, gender bias and discrimination are embedded social institutions and policies. The social environment in which an individual life trajectory occurs is structured by different axes, such as gender, generation, social class, cultural and ethnic factors (Drulhe, 2002). Gender should be understood as a social construct which refers to the set of characteristics, opportunities and expectations that are assigned to people based on their biology, and that they assume as their own. Social in-

Developing an integrated approach for research and policies on migration, health and ageing

equality is not distributed evenly but follows a gender distribution accordingly to the relative importance of masculinity and femininity as organizing principles of society in each social domain. Through gender socialization, both men and women learn gender roles (Giddens 1993). This process starts early in life and continues through childhood and adulthood, shaping the attitudes and behaviours of men and women in society. Thus, the level of welfare of women and men in later life is the result of the life course they followed and of the social, economic and institutional environment they were surrounded by. Accordingly, men and women in old age present different states of vulnerability according to the social and cultural roles they predominantly performed and the level of institutional protection granted by society. From a historical point of view, the structure of social relations of prevailing male dominance has characterised societies, which is reinforced by resistance to change towards a more gender neutral orientation. The social division between the sexes creates the appearance of deriving from the natural order of things, to a point of being seen as inevitable and objective, thus it is presented as dominating the entire social world, working as a scheme of perception, thought and action (Bourdieu, 1998). However, women and men are not uniform groups: class, ethnicity, sexuality and religion are just a few of the cleavages that distinguish women and men inside their own groups. Although their age-specific mortality rates are lower, older women do not enjoy better health than older men. On the contrary, they spend proportionately more of their later lives affected by disability (Robine et al., 1996; Robine & Romieu, 1998a, 1998b; Verbrugge, 1984). The combination of higher male mortality, gender differences at marriage and lower frequencies of female remarriage results in higher numbers of widows than widowers. A much higher proportion of married men than married women are likely to benefit from their spouse’s support. While older women take care of their husbands until they die, they are themselves left later in life with less support: “women grow old alone, men grow old in a couple”(Delbés et al., 2006). Little research is available about these disparities among immigrant couples. In addition to the differences linked to marital status and health, older women have on average a less advantaged economic situation, mainly due to their lower workforce participation throughout their lives. The financial consequences of being left alone are in general worse for women than for men, because of their lower personal (independently earned) pensions. Older migrant women face more poverty and deprivation as dependants or spouses of older male migrants with no pension rights. Often, they gained less language and other skills than their male counterparts, so they tend to be more vulnerable, benefiting less from social networks. In addition to gender issues, studies on ‘race and ethnicity’ underline the need for a critical perspective on migrant health. A belief in fixed biological differences pro-

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motes the idea of natural differences between races and ethnic groups. This has occurred in medicine, which was and “continues to be, a prime vehicle for the imposition of the classificatory gaze upon the body” (Annandale, 1998), which in many cases imply either overt or covert racism (Solomos and Back, 1994). In this sense, the increased attention paid to cultural or ethnic differences may lead to overlooking socioeconomic differences. One example comes from the field of mental health, when considering the intersection of racism and attribution of cultural differences, “where higher rates of illness among particular ethnic groups seem to be taken for granted” (Annadale, 1998: 186). The author refers to the higher rates of diagnoses of schizophrenia among Afro-Caribbean males in England. These differences can be attributed to cultural variations in the presentation of symptoms, to the material stresses of racism and to the propensity of indigenous white people to label them as mad without a cause (i.e. accessing the mental health system by the police, the courts and the prison, which illustrates institutional racial profiling) (Annandale, 1998). The inclusion of ethnicity as a health determinant has been considered valuable as it enable us to take account of attitudes and behaviours related to cultural norms and values. However, it is not appropriate to solely focus on racial or ethnic groups, because this would wrongly imply that such groups are homogeneous and the same in all times and places. Positing the existence of ‘ethnic groups’ (a mixture, in general, of nationality, place of birth or language) does not solve the problem of heterogeneity; on the contrary, it homogenises differences. In addition, Annandale (1998) suggests that ‘scientific racism’ has now been superseded by a ‘cultural racism’. The use of ethnic categories does not reduce the threat of negative, stigmatising views of immigrants (Fernandes et al., 2009:24). Moreover, the use and understanding of terms like race, ethnicity, immigrant origin, foreigner, etc. varies broadly across European countries, so that transferring the meaning from one context to another may only contribute to increasing misunderstandings. In this sense, it is not advisable to homogenise or impose categories across Europe. Ethnicity is therefore a two-edged sword. On the one hand, research on ethnic differences has been important for developing a framework of culture-sensitive care services. On the other hand, it may also lead to increasing stigmatization along the life course of migrants by enforcing a double discriminatory classification, as migrants and as older people (two stigmatised categories). Social determinants of health are highly important for migrant studies. Migrants from the same country develop different diseases depending on where they migrate to, illustrating that genetic predisposition is less important than environment (Marmot et al., 1999). The most important determinants of human health status are not medical care consumption and health behaviours (smoking, diet, exercise, etc.) but the social and economic characteristics of individuals and populations (Fernandes & Pereira Miguel, 2009). The relationship between socioeconomic status and the

Developing an integrated approach for research and policies on migration, health and ageing

risk of poor health and illness is not linear: we do not know exactly the effect of each risk factor on illness. Socioeconomic conditions are determinants of important differences in lifestyles and access to resources like accommodation, medical care, education and a good life. This means that better conditions help to reduce the risks associated with illness and morbidity for all people, including immigrants. 4. Active Ageing, a new framework for policy intervention In order to reflect on the ageing process among migrant populations, it is useful to introduce a framework for intervention, which addresses the challenges of ageing populations in general: the Active Ageing Paradigm. This vision enhances the ability of many elderly people to remain engaged in activities shaping the policies that states enact for older people. Hence, this paradigm aims at mainstreaming policies that promote security, participation and health for older people. The phenomenon of ageing and its socioeconomic impact will definitively challenge and test the capacity of states to respond to new demands, especially in providing a fair distribution of social resources. Fighting against inequalities need to be continually reinforced through public measures designed to address the inequities that arise during the life trajectory. Special attention needs to be paid to the elderly due to their specific economic and social vulnerabilities. This applies in particular to older women, whose social and economic situation tends to deteriorate with increasing age. The challenges of ageing populations, the burden of disease, and the increasing risks of disability and growing needs for care (both formal and informal) will require innovative planning and far-reaching policy reforms. Ageing often intensifies other pre-existing inequalities based on race, ethnicity or gender. While women are universally disadvantaged in terms of poverty, men have shorter life expectancies in most countries. Ageing studies consider two age categories in order to separate different cycles of the ageing process: 65-84 and 85+ years old. This categorization is based on the changing prevalence of ‘typical’ health conditions of the elderly. There is a growing impact of morbidity with age and changes in the epidemiological pattern of chronic diseases as a consequence of the increase in life expectancy. The Active Ageing paradigm was developed by the World Health Organisation. WHO’s Ageing and Life Course Programme, contributed to the Second United Nations World Assembly on Ageing (held in April 2002 in Madrid, Spain) developed the paradigm, which consists of a policy framework that supports the formulation of action plans to promote healthy and active ageing. In other words, Active Ageing not only focuses on health issues but also substitutes a needs-based for a rights-based approach, adopting the UN principles of independence, partici-

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pation, dignity, care and self-fulfilment. This paradigm takes an intergenerational approach that recognises the importance of relationships and support among and between family members and generations. It also reinforces ‘a society for all ages’, promoted as a central issue of the 1999 United Nations International Year of Older Persons. The concept of Active Ageing, which applies both to individuals and population groups such as older migrants, is defined as “the process of optimizing opportunities for health, participation and security in order to enhance quality of life as people age” (WHO 2002:12). One important consequence is that it allows people “to realise their potential for physical, social, and mental well being throughout the life course and to participate in society according to their needs, desires and capacities, while providing them with adequate protection, security and care when they require assistance” (WHO, 2002:12). The main issues that are relevant to the ‘active ageing’ of migrants, according to this programme, are: – – – – – – –

Participation (economic and voluntary activities, lifelong learning) Security (social security, elder abuse, social justice) Health promotion and disease prevention Primary health care and long-term care Culturally and gender sensitive health services Healthy behavious, age friendly environments Education and literacy, economic resources.

5. Final considerations The interaction between health and migration is multifaceted and dynamic. Migration certainly has an impact on the physical, mental, and emotional health and wellbeing of migrants along the life course, with a marked influence on the way in which migrants cope with ageing. We must take into account the fact that wellbeing in the last phase of life depends on the ability to maintain a positive balance between available resources and the challenges faced in old age. Differences in cultural understanding as related to ethnic or migrant status are determinants for social conditions and for healthcare access through the life course. Older migrants face similar difficulties as autochthonous elderly, but in addition they may face specific challenges resulting from their ethnic or foreign status and the cultural and political understanding of the host society. Thus the perspective of life cycle is a helpful framework for analyzing the health of elderly migrants, as it emphasises the chronology of events in the lives of individuals. The quality of life at old age is also strongly influenced by the political context in which a person lived (both in the country of origin and in the destination country).

Developing an integrated approach for research and policies on migration, health and ageing

In order to improve research on migration, health and ageing, we must consider the key factors related to the Active Ageing Framework: (i) access to social rights, housing, provision of services (health, nursing homes or home help services); (ii) general economic difficulties; (iii) family isolation and mental health; (iv) particular problems for older migrant women; (v) integration by civic and political participation. Moreover, concerning policies, public and social services, there are essential key aspects to improve good practices: (i) vulnerability, (ii) social isolation, and (iii) elderly migrants’ special needs. The integration of gender into health planning and policy-making should ultimately contribute both to improvements in social justice and to more effective health policies and programmes which will benefit both women and men (Vlassoff & Garcia Moreno, 2002:1721). This is also highly relevant to migrants, especially women, so taking into account also ethnic/immigrant background, gender and age will help attaining social justice and effective health policies for all human beings. Finally, should states provide special care for older migrants? There is not a common position on this matter, and we did not intend to put one forward here. However, there is a common understanding about some issues that should be taken into account when planning services for immigrants: (i) language barriers hamper access to rights and information, which could be worse in the case of isolated older migrants; (ii) collaboration with family networks facilitates services provision by improving access to populations which are difficult to reach; (iii) culturally sensitive services have been proven to be more effective; (iv) cooperation between governmental organizations, NGO’s and families in sharing responsibilities helps to reduce the required efforts and cost. An integrated approach could provide a more coherent, comprehensive and tailor-made perspective for the ageing of all population, including immigrants. It should be based on the Active Ageing Framework, which has become crucial in international and national policy-making, and on the well-known social determinants of health (culture; gender; economic determinants; social environmental determinants; physical environment; personal determinants; and behavioural determinants). References Annandale, E. (1998). The sociology of health and medicine. A critical introduction, Cambridge: Polity Press. Attias-Donfut, C., Tessier, P. & Wolf, F-C. (2005). Les immigrés au temps de la retraite. Retraite et société, 1(44), 11-47. Bourdieu, P. (1998). La Domination masculine, Paris: Éditions du Seuil. Bradley, D.E. & Longino, C.F. (2001). How older people think about images of ageing in

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advertising and the media. Generations, Journal of the American Society on Ageing, Fall, XXV (3), 17-21. Chodzko-Zajko, W. (2000). Successful ageing in the new millennium—The role of regular physical activity. Quest, 52, 333–343. Delbès, C., Gaymu, J. & Springer, S. (2006). Les femmes vieillissent seules, les hommes vieillissent à deux. Un bilan européen. Population et Sociétés, 419, 2-5. http://bit.ly/ AgDq9k Drulhe, M., (2002). Les inégalités sociales de santé: quelles intelligibilités? In: Leandro, M., Araújo, M. & Costa, M. (Eds.) Saúde: as teias da discriminação social – Actas do Colóquio Internacional ‘Saúde e Discriminação Social’. Braga: Instituto de Ciências Sociais. European Women’s Lobby (2007). Equal Rights, Equal Voices. Migrant women in the European Union. Brussels: European Women’s Lobby. http://bit.ly/y7sgow Fernandes, A. (2008). Questões Demográficas. Demografia e Sociologia da população, Lisbon: Edições Colibri. Fernandes, A. & Pereira Miguel, J. (Eds.) (2009). Health and Migration in the EU: Better Health for All in an Inclusive Society. London: Pro-Book Publishing Limited. http:// www.pro-brook.com/images/PDFs/Portugal%20EU%20health.pdf Fernandes, A., Backstrom, B., Padilla, B., Malheiros, J., Perelman, J. & Dias, S. (2009). Conceptual Framework. In: Fernandes, A. & Pereira Miguel, J. (Eds.) Health and Migration in the EU: Better Health for All in an Inclusive Society, Part I (pp. 23-32). London: Pro-Book Publishing Limited. http://www.pro-brook.com/images/PDFs/ Portugal%20EU%20health.pdf Giddens, A. (1993). Sociology. Cambridge: Polity Press. Henriques, M.A. (2010). Argumentos para uma viagem sem regresso. A imigração PALOP por via da saúde : um estudo de caso. Colecção Teses Nº 32. Lisboa: Alto Comissariado para a Imigração e o Diálogo Intercultural (ACIDI). Hondagneu-Sotelo, P. (1994). Gendered Transitions: Mexican Experiences of Immigration. Berkeley: University of California Press. Hondagneu-Sotelo, P. (2001). Domestica: Immigrant Workers Cleaning and Caring in the Shadows of Affluence, Berkeley: University of California Press. http://whqlibdoc. who.int/hq/2002/WHO_NMH_NPH_02.8.pdf Hunter, A. (2011). Theory and Practice of Return Migration at Retirement: the Case of Migrant Worker Hostel Residents in France. Population, Space and Place, 17, 179–192. Hutchison, T., Morrison, P. & Mikhailovich, K. (2006). A review of the Literature on Active Ageing. Canberra: University of Canberra (Health Pact Research Centre for Health Promotion and Wellbeing). http://www.canberra.edu.au/centres/healthpact/ attachments/pdf/active-ageing.pdf Kalache, A. & Kickbusch, I. (1997). A global strategy for healthy ageing. World Health, 50(4), 4-5. Machado, F. L. & Roldão C. (2010). Imigrantes Idosos: uma nova face da imigração em

Developing an integrated approach for research and policies on migration, health and ageing

Portugal, Lisboa: Alto Comissariado para a Imigração e o Diálogo Intercultural (ACIDI). Machado, M., Fernandes, A., Padilla, B., Dias, S., Gomes, I. Dias, A. & Oliveira da Silva M. (2010) Maternal and Child Healthcare for Immigrant Populations, International Organization for Migration Background Policy Paper developed in the framework of the AMAC project. Brussels: International Organisation for Migration. http:// www.migrant-health-europe.org/files/Maternal%20and%20Child%20Care_Background%20Paper(1).pdf Marmot, M., Wilkinson, R.G., Shaw. M., Dorling, D., Davey Smith, G. (1999). Poverty, social exclusion, and minorities. In: Marmot, M., Wilkinson, R.G. (Eds.) Social determinants of health (pp. 211-239). Oxford: Oxford University Press. McPherson, B.D. (1994). Sociocultural perspectives on ageing and physical activity. Journal of Ageing and Physical Activity, 2(4), 329–353. Padilla, B. (2007). A imigração brasileira em Portugal: considerando o género na análise. In: Malheiros, J. (Ed.) A Imigração Brasileira em Portugal (pp. 113-134). Lisboa: Alto Comissariado para a Imigração e o Diálogo Intercultural (ACIDI). Padilla, B. (2011). Third Transnational Workshop Report – Healthy and Wealthy Together. Health against Poverty in Europe. Focus on: Child, women and older retired migrants from Third National Countries. Amadora, Portugal: Municipality of Amadora. http://bit.ly/zg7l0I Robine, J.M., Mathers, C., Brouard, N. (1996). Trends and differentials in disability free life expectancy: concepts, methods and findings. In: Caselli, G. & Lopez, A. (Eds.) Health and mortality among elderly populations (pp. 182-201). Oxford: Clarendon Press. Robine, J.M. & Romieu, I. (1998a). Health expectancies in the European Union: progress achieved. REVES Paper 319. Montpelier, France: INSERM. Robine J.M. & Romieu, I. (1998b). Healthy Active Ageing: Health expectancies at age 65 in the different parts of the world. REVES Paper 318. Montpelier, France: INSERM. Sayad A. (2006). La double absence. Des illusions de l’émigré aux souffrances de l’immigré, Paris: Le Seuil. Sidorenko, A. (1999). The international year of older persons. Journal of Ageing and Physical Activity, 7(1), 1–2. Stoller, E. P. & Longino Jr, C. F. (2001). ‘Going home’ or ‘leaving home’? The impact of person and place ties on anticipated counter stream migration. Gerontologist, 41(1), 96-102. Témime, E. (2001). Des Kabyles à Marseille. Une migration précoce et durable. Confluences Méditerranée, 39, 119-128. http://www.cairn.info/revue-confluences-mediterranee-2001-4-page-119.htm Verbrugge L. (1984). Longer life but worsening health? Trends in health and mortality of middle aged and older persons. Milbank Memorial Fund Quarterly, 62, 475-519. Vlassoff, C. & Garcia Moreno, C. (2002). Placing gender at the centre of health pro-

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gramming: challenges and limitations. Social Science and Medicine, 54, 1713–1723. Walker A. (2002). A strategy for active ageing. (Second World Assembly on Ageing). International Social Security Review, 55(1), 121-139. Walters, W.H. (2002). Later-Life Migration in the United States: A Review of Recent Research. Journal of Planning Literature, 17, 37-66. WHO (2002). Active ageing. A policy framework. Geneva: WHO. http://whqlibdoc.who. int/hq/2002/who_nmh_nph_02.8.pdf

Health status of minorities during epidemiological transition

Chapter 15

Health status of minorities during epidemiological transition: the case of the Arab minorities in Israel

Jalal Tarabeia, Manfred Green & Fuad Iraqi

1. Introduction and Background The epidemiological transition occurs as a country undergoes the process of modernisation and industrial development. An increase in living standards, together with the expansion and improvement of healthcare, leads to a drastic reduction of infant mortality rates and an extension of average life expectancy; subsequently, fertility declines. The average age of the population increases, while chronic degenerative diseases displace infectious diseases and undernourishment as the most important causes of death (Omran, 1971; Caldwell, 2001). Socio-economic factors have a major influence on nutrition, physical activity, social behaviour and health. Their influence is exemplified by the dramatic rise in prevalence of noncommunicable diseases (NCDs) during the epidemiological transition. Cardiovascular diseases (CVDs), type 2 diabetes, obesity, asthma, cancer, cholesteatosis and other conditions have emerged as the leading causes of morbidity, disability and mortality in many developing and newly developed nations such as India, China, sub-Saharan Africa, Latin America and Arab countries (Yusuf et al., 2001; Reddy & Yusuf, 1998; Alwan, 1993 & 1997; Wahdan, 1996; Reddy, 2002; Pearson, 1999; Albala et al., 1993; Albala and Vio, 1995). The timing of an epidemiological transition may vary between population groups within a country. In the words of Gulliford (2003: 408): “Typically, more affluent groups make these transitions more rapidly than poor or ethnic minority groups”. There are few large population-based studies on the impact of epidemiological transition on minorities and sub-populations outside of North America and Europe. Unfortunately, such studies are limited in most of the Arab and Muslim countries. Recently, a limited number of studies have focused on the Arab popula-

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tion (minorities) in Israel, which is considered to be a population undergoing the epidemiological transition (Amad et al., 1996; Abou-Rabiah and Weitzman, 2002; Jaber et al., 2003; Abdul-Ghani et al., 2005; Kark et al., 2000; Keinan-Boker 2005). Since the establishment of the State of Israel in 1948, the Arab population has been recognised as a minority, maintaining its own traditions and language. On the other hand, acculturation due to coexistence with the Jewish population has encouraged rapid epidemiologic transition, and subsequently affected their health status by changing their traditional diet, lifestyle and social behaviour (Lubin et al., 2003; Tarabeia et al., 2007). The Arab population numbers about 1,4500,000 citizens, comprising 20% of the Israeli population (ICBS, 2011). The Arabs in Israel live separated from the Jewish population, except in few cases like in Haifa, Acre and limited cases in Jaffa. Most of the population (56.1%) resides in four regions in Israel, namely the North (Galilee area), the Haifa district, the Central (the triangle region in Israel) and the South region. The majority of the Arab population (60%) live in 155 villages, 20% live in seven towns (large villages, in terms of urban development), and about 10% live in 6 mixed Jewish-Arab cities (ICDC, 2005). Most of the Arabs (83.2%) are Muslims, 8.6% are Arab Christians and 8.2% are Druze. In the North and Haifa regions, Muslims, Christians and Druze have lived in harmony in mixed populations for many years. However, in the central and southern regions, Muslims are the main, if not the only Arab habitants. The Arab population is young and about 40% are under 15 years old. The population is characterised by unique features including culture, extended family ties and strong social support, a high rate of unemployment and consanguineous marriages. Recent surveys, conducted by a variety of Israeli governmental, local research and non-governmental organisations (NGOs), have shown that there is a large gap between the socioeconomic and socio-political circumstances of the Israeli-Arabs when compared with Israeli-Jews (Kahan and Fogelman, 2005: ICBS, 2005; Sikkuy report, 2008). Little evidence is available to support the contention that any sizable proportion of this overall inequality is caused by genetic factors operating at the population level. For instance, when Israeli communities/cities were ranked based on their socioeconomic status (1 being low rank and 10 being high), it was found that about 75 communities/cities were ranked between 1 and 3; out of them, 66 communities were part of the Arab population, and just 9 found in the Jewish communities. In the highest ranking from 8 to 10, all 35 communities were Jewish. A 2008 survey showed that more than 49.4% of Arab families live under the poverty line, compared with 15% of Jewish families. Strikingly, based on the 2008 survey, studies have shown that 62.1% of children in the Arab population live under the poverty line, in contrast to 15.3% of Jewish children (Sikkuy report, 2008; ICBS, 2005; report on poverty survey of the Israeli Social services, 2008). The total unemployment in the Arab and Jewish societies was found to be 10.5% and 7.5%

Health status of minorities during epidemiological transition

respectively. However, when womens’ employment in both societies was analysed, 56% of Jewish women but only 19% of Arab women were employed (Sikkuy report, 2008; ICBS, 2005; report on poverty survey of the Israeli Social services, 2008). As expected, these factors will ultimately influence access to health services and affect the health status of the Arab minority. Arab countries display some of the highest rates of consanguineous marriages in the world, particularly first cousin marriages which may reach 25-30% of all marriages. The main genetic impact of consanguinity is an increase in the rate of homozygotes for autosomal recessive genetic disorders. Consanguineous marriages are observed in the Arab minorities in Israel, especially in the population living in the southern part of the country known as Arab Bedouin (Jaber et al., 1997 & 2003; Lahat et al., 2004; Verge et al., 1998). In this chapter we report on the health status of the Arab population in Israel, including physical, mental, and lifestyle factors which may affect their health status, and discuss these findings. Furthermore, we will compare the status of a limited but important number of diseases in Arab and Jewish populations in Israel. Finally, we address briefly some of the suggested prevention approaches for these major diseases. 2. Data collection and presentation The data presented in this chapter were extracted from a variety of sources including the Israel National Cancer Registry (INCR), Israel Central Bureau of Statistics (ICBS), Israeli Center for Disease Control (ICDC, 2003, 2005, 2010, 2011), the Association for Advancement of Civic Equality (Sikkuy) and the Galilee Society for Research and Development Center, 2008. The data on cancer incidence and mortality were obtained from the Israel National Cancer Registry (INCR), which was established in 1960. Data on mortality were obtained from the Israel Central Bureau of Statistics (ICBS). The data on health indicators (infant mortality rates (IMR) and life expectancy) were extracted from publications of the Central Bureau of Statistics. Annual statistics are published with data on IMR broken down by region, age, and cause of death. Published data and national reports on the health status of Israeli Arabs are mainly from surveys conducted by the Israeli Center for Disease Control (ICDC) and the Israel Central Bureau of Statistics. In this chapter we present in detail data that demonstrate the epidemiological transition in the Israeli Arab population and the differences in health indicators between the Arab population and other subpopulations in Israel (Jaber et al., 1997; Verge et al., 1998; Baron-Epel et al., 2005; Koton et al., 2001; Kristal-Boneh et al., 2000; Keinan-Boker et al., 2005; Tarabeia et al., 2004).

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3. Results 3.1 Health indicators The major indicators of the Israeli Arab demographic transition are the decrease in fertility rates and infant mortality rates, the increase in life expectancy, and the ageing of the population. At the end of the year 2008, 3.5% of the Arab population was 65+ years old, and about 39.4% were under 15 years old. Children between age 1 and 4 years compromised 18.7% in year 1955, and 13.4% in year 2008. The total fertility rate among Muslim, Christian and Druze women in year 2008 was 3.8, 2.1, and 2.5 respectively (ICDC, 2011). In the last few years, the life expectancy at birth in the Arab population has not changed and the gap between Jews and Arabs has widened, which indicates an improvement of health in the Jewish but not in the Arab communities (Naamna et al., 2010). In 2008, the life expectancy at birth among Arab men was 75.9 and among women 79.7 years (Figure 1).

Figure 1: Trends in life expectancy in the Arab population in Israel between 1975 and 2007 life expectancy, Arabs by sex 1

Source: ICDC (2011) 90

Arab men

Arab women

85 life expectency

222

80

75

70

65

60

75 76 77 78 79 80 81 82 83 84 85 86 87 88 89 90 91 92 93 94 95 96 97 98 99 00 01 02 03 04 05 06 07 year

Despite the substantial decrease in the infant mortality rate during the last 30 years, which was observed in all the population groups in Israel, the infant mortality rate in the Arab population is twice as high as in the Jewish population (Tarabeia et al., 2004; Amitai et al., 2005). The infant mortality rate in 2008 was 6.8 per 1,000 live births among Arabs and 2.9 among Jews. Between 1978 and 2008 infant mortality rates declined by 76% among Muslims, 77% among Druze and 91% among Arab Christians. The highest rates of infant mortality among the Arab population were

Arab wome 71,5 72,4 71,3 72 73,1 73,4 74,2 73,3 74,1 74,2 75,8 75 75,8 75,1 75,5 75,9 75,7 75,5 76,9 77,1 77,3 77,2 76,8 76,8 78,1 77,9 77,8 77,9 78,2 79,6 78,7

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223

reported in the Southern region of the country among the Bedouin population (10.5 per 1,000 live births). 3.2 Patterns and trends in morbidity and mortality One of the main changes in the Israeli Arab population is the significant increase of mortality due to metabolic diseases including diabetes, obesity and cancer. Figure 2 shows the causes of death in 2007 compared with 1987. In the year 2007, 4,052 cases of death were reported among the Arab population; 2292 among men and 1760 among women. The age-adjusted mortality rates per 100,000 were higher among men than women for cancer, cardiovascular disease, diabetes, COPD and external injuries (ICDC, 2011)

causes of deathe 1987 2007 2,4 2,6 I 3,5 4,1 C 9,0 5,3 C 9,8 8,1 E 2,2 8,8 D 27,6 17,1 C 10,9 19,5 C

Figure 2: Causes of death (%) among the Arab population in 1978 and 2008 Source: ICDC (2011)

10,9

Cancer

19,5

CVD Diabetes

2,2

8,8

External injuries

8,1

CVA COPD Infection diseases

0

27,6

17,1

5,3

9,8

9,0

3,5 4,1

2007

1987

2,4 2,6

5

10

15 Percent

20

25

30

Table 1 shows the breakdown of prevalences of certain chronic diseases by age group and sex in 2007. The most numerous diseases were hypertension, diabetes, cholesteatosis, discopathy and cardiac diseases. These diseases were more prevalent among persons older than 59, and women were more often affected than men. For instance, the total percentages of hypertension, diabetes, cholesteatosis, discopathy and cardiac diseases in women were 4.3, 4.0, 2.7, 2.4 and 1.3, but in men 3.2, 3.3., 2.2, 2.2 and 2.1, respectively (Galilee society, 2010).

0.2

-

0.1

0.2

Depression

Anemia

0.6

-

-

0.8

0.1

-

-

0.1

0.1

0.1

Osteo- porosis

Asthma

Ulcer

Cancer

Cholesteatosis

Cardiac Diseases

Hypertension

Diabetes

-

0.1

0.1

0.1

-

-

0.2

-

0.1

Arthritis

Headache

-

0.1

0.1

Discopathy

F

98.3

98.2

Healthy

M

0-19

Source: Galilee Society (2010)

-

0.1

0.1

0.1

-

-

0.7

-

0.1

-

0.2

0.1

0.1

98.3

Total

M

0.2

0.3

0.1

0.6

0.1

0.2

0.2

-

0.2

0.1

0.1

0.2

0.3

97.3

0.2

0.3

0.0

0.2

-

-

0.2

-

0.7

0.5

0.4

0.1

0.3

97.3

F

20-29

0.2

0.3

-

0.4

-

0.1

0.2

-

0.5

0.3

0.3

0.1

0.3

97.3

Total

M

1.8

1.8

0.5

1.3

0.2

0.4

0.4

0.1

0.3

0.4

0.3

0.3

3.0

92.0

2.0

1.1

0.2

1.3

0.3

0.7

0.4

-

1.5

1.2

0.8

0.4

1.9

90.9

F

30-39

1.9

1.5

0.3

1.3

0.3

0.5

0.4

-

0.9

0.8

0.6

0.3

2.4

91.4

Total

M

6.9

6.4

3.9

4.6

-

1.4

1.0

0.1

1.1

2.6

0.2

0.5

5.7

79.1

5.1

7.9

2.5

5.6

0.8

1.1

0.6

1.0

2.4

4.0

1.6

0.8

6.0

75.5

F

40-49

6.0

7.1

3.2

5.1

0.4

1.3

0.8

0.6

1.8

3.3

0.9

0.7

5.8

77.3

Total

M

17.2

16.6

11.2

13.2

1.5

1.2

2.3

0.5

1.2

2.1

1.0

0.5

10.0

57.0

21.5

23.0

6.4

14.0

1.1

1.6

1.2

1.1

3.5

7.2

1.7

0.6

10.9

54.7

F

50-59

19.4

19.8

8.8

13.6

1.3

1.4

1.7

0.8

2.3

4.6

0.9

0.5

10.4

55.8

Total

M

28.0

27.9

19.3

15.8

2.2

1.3

4.2

0.7

2.4

8.2

0.5

-

12.1

38.2

38.6

37.5

12.4

21.5

1.3

2.4

1.8

5.1

3.5

18.7

2.5

0.5

15.7

26.0

F

60+

33.4

32.8

15.8

18.7

1.7

1.9

3.0

3.0

2.9

13.5

1.6

0.2

13.9

32.0

Total

Table 1: Percentage of the Israeli-Arab population reporting certain chronic diseases in the year 2007, broken down by age and sex

224 Jalal Tarabeia, Manfred Green & Fuad Iraqi

Health status of minorities during epidemiological transition

Finally, the prevalence of these diseases was analysed based on the locations of the Arab minorities in different regions in Israel. Overall, the prevalence were almost similar in the populations in the three districts North, Haifa and Center, while prevalences were lower among the population living in the southern part of the country (Bedouin). These significant differences can be explained due to the lifestyle practices and diets in these communities. The Bedouin communities live traditional and conservative lifestyles, while others live more urban and modern lifestyles (Galilee society, 2010). 3.3 Cardiovascular disease (CVD) Heart disease among Arabs in Israel is a leading cause of adult mortality, both for men and women (Froom et al., 2000; Gofin et al., 1981; Kark et al., 2000). The prevalence increases with age. Based on the Israeli national health survey (INHIS-2), which was conducted during the years 2007 and 2008, the prevalence of heart disease between 45 and 54 years of age was 12.2% among men and 9.3% among women, respectively, while for persons of 75 and above it was 38.5% and 22.2%. Coronary heart disease (CHD) is the main cause of death from heart disease. Overall, there is an ongoing decline of age-adjusted mortality rates from CHD in Israel (ICDC, 2005; ICDC, 2011), which can be partially explained by implementation of new therapeutic modalities (Gottlieb et al., 2000). In a national survey conducted in the year 2008, the prevalence of self-reported myocardial infarction among Arab men was 8% (age adjusted) compared with 3.5% among women (INHIS-I). Until 1987, age-adjusted mortality rates from ischemic heart disease were lower among Arabs than Jews, an indication that the latter group was the first to undergo the epidemiological transition. Since the year 1990, rates have been higher among Arabs (Green, 1998). The age-adjusted mortality rate due to CVA recorded in year 2007 was 34.2 and 41.5 per 100,000 among Arab men and women, respectively. The corresponding rates among Jewish men and women in the same year were 30.7 and 25.9 per 100,000, respectively. Rates have declined more rapidly among Jews than among Arabs (ICDC, 2011). 3.4 Diabetes mellitus Diabetes mellitus has a high prevalence among the Arab population, making it one of the leading causes of disability and mortality (Abdel-Ghani et al., 2005; Jaber et al., 1997; Baron-Epet et al., 2005). The high prevalence of obesity, the lack of physical activity, low socioeconomic status and the increase in aging were the main risk factors for diabetes. Between 1979 and 2005 age-adjusted mortality rates increased by 207.3% (8% annual increase) among Arab men, and 140.1% among women (5.4% annual increase) (ICDC, 2010; ICDC, 2011). One in three women at age 55 years and more have been diagnosed with diabetes mellitus, and one in four men between ages 55 and 74 years. 42.3% of the men at age 75+ years old had this diagnosis (ICDC, 2011).

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There has been a significant increase in the disease among Arab women above the age of 45. These women have the highest prevalence of diabetes and can be vulnerable to other chronic diseases including cardiovascular diseases and strokes. In Figure 2 the steep rise in diabetes between 1987 and 2007 can be clearly seen. 3.5 Overweight and Obesity Overweight and obesity are very frequent among men and women in the Israeli Arab population. The prevalence of obesity increased steeply up to age 64 years for both men and women. Table 2 shows the prevalence of overweight and obesity among the Arab population by sex and age group. Results have shown that, regardless of their ethnicity, women have higher percentage of obesity than men. Overall, both Arab men and women have higher percentage of obesity when compared with Jewish men and women populations. An almost twofold (41.2%) was observed with Arab women compared with Jewish women (22.2%). A slightly higher percentage was also observed with Arab men when compared with Jewish men. Data analysis based on age and ethnicity have clearly shown that the percentage differences in Arab women start at early stages as of 25 years old and increase with age, reaching the highest difference at age 55 and older. However, the differences between Arab and Jewish men start at age 55 years and older (ICDC, 2005; ICDC, 2011). Table 2: The prevalence (%) of overweight and obesity of women and men in the Arab population in Israel based on age Age group

Women Overweight

Men Obesity

Overweight

Obesity

21-34

20.8

6.7

34.3

12.0

35-49

41.3

22.2

38.3

19.7

50-64

35.7

45.7

46.2

30.8

65+

44.4

27.8

52.4

20.7

Source: ICDC (2011)

3.6 Cancer Both incidence rates and mortality rates for cancer have increased consistently over the last three decades for both Arab men and women. Among the men, the age adjusted incidence rates of cancers increased by 138.4% and among women by 152.7%. Lung cancer was most frequent among Arab men (16%) followed by colorectal cancer (11.4%), prostate (10.8%), bladder (10.4%) and non-Hodgkin’s lymphoma (7.6%). Among Arab women, breast cancer was most frequent (30%), followed by colorectal (13.4%), thyroid (7.3%), non-Hodgkin’s lymphoma (6.8%) and corpus uteri and uterus (4.6%) (ICDC, 2011).

Health status of minorities during epidemiological transition

A higher rate of fatalities from breast cancer and low survival among Arab women compared to Jewish was also observed (Tarabeia et al., 2007). Arab men have higher mortality from lung cancer than Jewish men. Results have also shown that Jewish Israeli women have a higher rate than Arab women. This might be explained due to less smoking among Arab women compared with Jewish women (Tarabeia et al., 2008; ICDC, 2011). 3.7 Health Behaviours Smoking is a major factor that can affect health by causing chronic diseases and cancer (Zimlichman et al., 2005). The percentage of smokers among the Arab minorities in Israel was analysed according to region, age and sex (Tarabeia et al., 2008; Galilee report, 2010). Overall, men smoke more than women and a major increase of this practice was observed from 18 years of age. Interestingly, men living in the Southern and Central regions smoke less (average 25.5%), when compared with populations living in the Northern and Haifa regions (average 35.5%). Similar differences were also observed between women in these regions. These differences can be explained by the different lifestyle practices between these communities (North and Haifa populations are urban, while Southern and Central are more traditional). 3.8 Physical activity Surveys have shown that 23.8% of the Arab men and 15.4% of Arab women over 21 reported practicing physical activity three times a week for at least 20 minutes each time. Between the ages of 21 and 34, 27.8% of the men reported this level of physical activity, compared to only 15.3% of the women. Over the age of 65 the contrast was even more pronounced: 24.1 versus 3.9% (ICDC, 2011). 3.9 Marriage practices and consanguinity As mentioned in the Introduction, consanguinity marriages enjoy widespread acceptance in some Arab communities, particularly in the Southern region. Furthermore, when this data was analysed based on religious origin (Muslim, Christian and Druze), it was found that total marriages based on the relations with first degree was higher in the Druze community (20.45%), followed by the Muslim and Christian communities with 18.5% and 13.4%, respectively. However, the highest observation of marriage based on other relative (second and more) degrees was in the Muslim community with 21.5%, while significantly lower in the Druze (8.0%) and Christian (5.7%) communities (Galilee Society report, 2010). 4. Discussion Changes in disease trends during the last three decades among the Arab population indicate that a rapid epidemiologic transition is taking place. There is a dramatic

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decline in fertility rates and infant mortality, and an increase in life expectancy. The burden of disease has shifted to more chronic and degenerative diseases such as cancer, diabetes and vascular diseases. The decline in preventable infectious disease and mortality can be explained mainly by high coverage of immunisation, together with improving socioeconomic status and increasing availability of community health services. However, when chronic and degenerative disease rates are compared between Arab and Jewish populations, significant differences are observed. Overall, based on the recent ICDC report (2011), the health status of the Jewish population in Israel is better than the Arab populations regardless of their gender, region or religions. Furthermore, results show that lifestyle and cultural practices can be critical factors affecting the Israeli-Arab population’s health status. For example, low rates of smoking by Arab women, and high rates among Arab men, are reflected in the lung cancer statistics. Consanguineous marriages in the Arab population might enhance the expression of recessive diseases. Data from the Acute Coronary Syndrome Israel Survey (ACSIS), conducted biannually between the years 1992 and 1998 in all the intensive care cardiac units and cardiology departments in the country, indicate differences in demographic characteristics and the prevalence of cardiovascular risk factors between Jewish and Arab patients. For example, the Arab patients were 6 years younger than Jewish, while the proportion of smokers and diabetics were higher among Arab patients than Jewish patients (53% versus 34% and 33% versus 26% for smoking and diabetes mellitus, respectively) (ICDC, 2005). In the Jerusalem district, Arab men and women were at about a twofold increased risk of death from coronary heart disease as compared to Jewish men and women during the period 1984 – 1997 (Kark et al., 2000). The cumulative data show that the Israeli Arab community has a higher risk for cardiovascular diseases. Risk factors for coronary heart disease, including smoking, obesity, diabetes mellitus and lack of physical practice, are more frequent among the Arab population than Jews. Unfortunately, these findings were still observed based on the recent reports by Galilee Society in 2010 and ICDC in 2011. For two decades after the establishment of the State of Israel, the Arab population adapted a traditional lifestyle; food intake was rich in vegetables and grain, while fast and processed food was not found in Arab diets. The lack of infrastructure and employment opportunities in the Arab communities, including villages and cities, are major factors in determining the low socioeconomic status of these communities. During the last four decades, there has been a continuing trend of leaving the Arab villages and towns for big cities (mainly Jewish cities) looking for work opportunities which do not exist in their local communities. Increasing coexistence and interaction with the Jewish population has resulted in rapid westernisation of lifestyle. In recent years, there has been an accumulation of environmental risk factors due to exposure in work and home environments. Fast food was introduced to big

Health status of minorities during epidemiological transition

Arab villages and towns, and processed food occupied every market in these small communities. High prevalence of unemployment with low socioeconomic status and lack of physical activities lead to high prevalence of obesity, diabetes, CVD and ultimately death. The decline in fertility rate and the increasing age of marriage, which leads to the increasing age of first delivery, make Arab women more susceptible to breast cancer by losing protective factors (Tarabeia et al., 2007). The increase in prevalence of patients with Type-2 diabetes Mellitus (T2DM) and obesity are problems for health care and public health worldwide (IDF, 2009). There are overlapping risk factors for both diseases, and a significant overlap in mechanisms of disease development can be observed (Razni et al., 2008). The coincidence of diabetes mellitus and insulin resistance in those patients seem to be the driving force behind the increase in morbidity and mortality (Donatelli et al., 2008). However, a very fast increase of diabetes prevalence has also been observed in Arab populations in the Middle East, in areas undergoing rapid economic development, as well as in Arab communities in Israel. Furthermore, high rates of undiagnosed diabetes were also observed in some Arab populations, indicating that Arabs are at a very high risk for T2DM, in part due to the high rate of consanguineous marriages (Alwan and King, 1995; Herman et al., 1995; Al-Mahroos et al., 1998; Jaber et al., 2003 & 1997; Abdul-Ghani et al., 2005; Verge et al., 1998; Baron-Epel et al., 2005). 5. Primary prevention Minority populations undergoing rapid epidemiological transition need special attention and urgent interventions for primary prevention and early detection of disease. Despite the decline in infant mortality, the rates in the Arab population are still twice as high as in the Jewish population. Intervention is needed to reduce external injuries of infants as a cause of infant death and congenital anomalies by discouraging consanguineous, or increasing knowledge and attitudes regarding screening for genetic and heredity diseases before marriage or during pregnancy, as well as the availability of screening. Urgent intervention to combat smoking habits among Arab men should start with education in schools against smoking (cigarette and water pipe), followed by campaigns for quitting among smokers. Apart from deaths due to lung cancer, smoking strongly affects the development of cardiovascular diseases and COPD, making the mortality rates from these diseases higher among the Arab population compared to Jewish. Special attention should be given to the increase in the incidence of breast cancer among Arab women due to the changes in risk factors (fertility rates, age at first delivery, breast feeding); secondary prevention is therefore needed for early detec-

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tion of the disease by mammography. Arab women are more likely to be diagnosed at advanced stages of the disease reflecting in higher case-fatality and low five year survival. An increase of awareness about routine screening for this disease, especially in high risk ages and populations, is needed. A specially designed and major program for the Israeli-Arab populations should eventually lead to a reduction of breast cancer mortality. The epidemic of obesity needs a national program for each country to fight obesity from childhood with education for healthy diet and physical activity. The high prevalence of obesity is related to high rates of diabetes mellitus, which have increased dramatically. This disease is associated with complications leading to severe disability and mortality. Finally, it is recommended that policy makers need to put primary prevention as a top priority to close the gaps between Arab and Jewish socioeconomic status, lifestyle practices, infrastructure, health and social services, which will result in improving the health status of these communities. References Abdul-Ghani, M.A. et al. (2005). High frequency of pre-diabetes, undiagnosed diabetes and metabolic syndrome among overweight Arabs in Israel. Israel Medical Association Journal 2005, 7, 143-7. Abou-Rbiah. Y. & Weitzman, S. (2002).Diabetes among Bedouins in the Negev: the transition from a rare to a highly prevalent condition. Israel Medical Association Journal, 4, 687-9. Alballa, S.R., Bamgboye, E.A., al-Sekeit, M. & Alballaa, S.R. (1993). Causes of morbidity among a sample of elderly hospital patients in Riyadh, Saudi Arabia. Journal of Tropical Medicine and Hygiene, 96, 157-62. Albala, C. & Vio, F. (1995). Epidemiological transition in Latin America: the case of Chile. Public Health, 109, 431-42. Al-Mahroos, F. & McKeigue, P.M. (1998). High prevalence of diabetes in Bahrainis. Associations with ethnicity and raised plasma cholesterol. Diabetes Care, 21, 936-42. Alwan, A.A. (1993). Cardiovascular diseases in the Eastern Mediterranean region. World Health Statistics Quarterly, 46, 97-100. Alwan, A.A. (1997). Non-communicable diseases: a major challenge to public health in the region. Eastern Mediterranean Health Journal, 3, 6-16. Alwan, A. & King, H. (1995). Diabetes in the Eastern Mediterranean (Middle East) region: the World Health Organization responds to a major public health challenge. Diabetic Medicine, 12, 1057-8. Amad, S., Rosenthal, T. & Grossman, E. (1996). The prevalence and awareness of hypertension among Israeli Arabs. Journal of Human Hypertension, 10 Suppl 3, S31-3.

Health status of minorities during epidemiological transition

Baron-Epel, O., Kaplan, G., Haviv-Messika, A., Tarabeia, J., Green, M.S. & Kaluski, D.N. (2005). Self-reported health as a cultural health determinant in Arab and Jewish Israelis. MABAT-National Health and Nutrition Survey 1999-2001. Social Science and Medicine, 61, 1256-1266. Caldwell, J. (2001).Population health in transition. Bulletin of the World Health Organization, 79, 159-160. Donatelli, F. et al. (2008). Correlation between pre-operative metabolic syndrome and persistent blood glucose elevation during cardiac surgery in non-diabetic patients. Acta Anaesthesiologica Scandinavica, 52, 1103-10. Froom, P., Kristal-Boneh, E., Melamed, S., Harari, G., Benbassat, J. & Ribak, J. (2000). Serum total cholesterol and cardiovascular mortality in Israel males: the CORDIS Study. Cardiovascular Occupational Risk Factor Determination in Israeli Industry. Israeli Medical Association Journal, 2, 668-71. Galilee Society (2010). Socioeconomic survey of Palestinians in Israel 2010, Shef-’Amr, Israel: The Galilee society – the the Arab national society for health, research and services. Gottlieb, S., Goldbourt, U., Boyko, V., Harpaz, D., Mandelzweig, L., Khoury, Z., Stern, S. & Behar, S. (2000). Mortality trends in men and women with acute myocardial infarction in coronary care units in Israel. A comparison between 1981-1983 and 1992-1994. For the SPRINT and the Israeli Thrombolytic Survey Groups. European Heart Journal, 21. 284-95. Gofin, J., Kark, E., Mainemer, N., Kark, S.L., Abramson, J.H., Hopp, C. & Epstein, L.M. (1981). Prevalence of selected health characteristics of women and comparisons with men. A community health survey in Jerusalem. Israeli Journal of Medical Science, 17, 145-59. Green, M.S. & Peled I. (1992).Prevalence and control of hypertension in a large cohort of occupationally-active Israelis examined during 1985-1987: the Cordis Study. International Journal of Epidemiology, 21, 676-82. Green, M.S. (1998). Differences between Israeli Jews and Arabs in morbidity and mortality rates for diseases potentially associated with dietary risk factors. Public Health Review, 26, 31-40. Gulliford, M. (2003). Commentary: Epidemiological transition and socioeconomic inequalities in blood pressure in Jamaica. International Journal of Epidemiology, 32, 408-409. Herman, W.H. et al. (1995). Diabetes mellitus in Egypt: risk factors and prevalence. Diabetic Medicine, 12, 1126-31. ICDC (2003). MABAT– First Israeli National Health and Nutrition Survey 1999-2001, Part 1 – General Findings. Tel Aviv: Israel Center for Disease Control, Ministry of Health, Publication No. 225. ICDC (2005). The Health status of Israeli Arab population, 2004. Tel Aviv: Israel Center for Disease Control, Ministry of Health, Publication No. 226 (Hebrew). ICDC (2011). The health status in Israel. Tel Aviv: Israel Center for Disease Control,

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Ministry of Health, Publication No. 333 (Hebrew). ICBS (2004). Statistical Abstract of Israel 2004, Tel Aviv: Israel Central Bureau of Statistics, Publication No. 55. IDF (2009). Diabetes Atlas Volume 4, Brussels: International Diabetes Federation. Jaber, L.A., Shohat, T., Rotter, J.I. & Shohat, M. (1997). Consanguinity and common adult diseases in Israeli Arab communities. American Journal of Medical Genetics, 70, 346-8. Jaber, L.A. et al. (2003). Epidemiology of diabetes among Arab Americans. Diabetes Care, 26, 308-13. Kahan, E., Fogelman, Y. & Bloch, B. (2005). Correlations of work, leisure, and sports physical activities and health status with socioeconomic factors: a national study in Israel. Postgraduate Medical Journal, 81, 262-5. Kark, J., Gordon, E. & Haklai, Z. (2000). Coronary heart disease mortality among Arab and Jewish residents of Jerusalem. The Lancet, 356, 1410-1. Keinan-Boker, L., Noyman, N., Chinich, A., Green, M.S. & Nitzan-Kaluski, D. (2005). Overweight and obesity prevalence in Israel: findings of the first national health and nutrition survey (MABAT). Israeli Medical Association Journal, 7, 219-23. Koton, S., Bornstein, N.M. & Green, M.S. (2001). Population group differences in trends in stroke mortality in Israel. Stroke, 32, 1984-8. Kristal-Boneh, E., Silber, H., Harari, G. & Froom, P. (2000).The association of resting heart rate with cardiovascular, cancer and all-cause mortality. Eight years follow-up of 3527 male Israeli employees (the CORDIS Study). European Heart Journal, 21, 116-24. Lahat, H., Pras, E., Eldar, M. (2004). A missense mutation in CASQ2 is associated with autosomal recessive catecholamine-induced polymorphic ventricular tachycardia in Bedouin families from Israel. Annals of Medicine, 36 Suppl 1, 87-91. Lubin, F., Lusky, A., Chetrit, A. & Dankner, R. (2003).Lifestyle and ethnicity play a role in all-cause mortality. Journal of Nutrition, 33, 1180-5. Omran, A.R. (1971). The epidemiologic transition. A theory of the epidemiology of population change. Milbank Memorial Fund Quarterly, 49, 509-38. Pearson, T.A. (1999). Cardiovascular disease in developing countries: myths, realities, and opportunities. Cardiovascular Drugs and Therapy, 13, 95-104. Razani, B., M.V. Chakravarthy & C.F. Semenkovich (2008). Insulin resistance and atherosclerosis. Endocrinology and Metabolism Clinics of North America, 37, 60321, viii. Reddy, K.S. & Yusuf, S. (1998) Emerging epidemic of cardiovascular disease in developing countries. Circulation, 97, 596-601. Reddy, K.S. (2002) Cardiovascular diseases in the developing countries: dimensions, determinants, dynamics and directions for public health action. Public Health Nutrition, 5, 231-7. Sikkuy (2008). The Equality Index of Jewish and Arab Citizens in Israel. The Sikkuy Report 2008. Jerusalem: Sikkuy (Association for the Advancement of Civic Equality

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in Israel). http://www.sikkuy.org.il/english/en2008/ei_report_2008.pdf Tarabeia, J., Amitai, Y., Green, M., Halpern, G.J., Blau, S., Ifrah, A., Rotem, N. & Jaber, L. (2004). Differences in Infant Mortality Rates between Jews and Arabs in Israel 1975 – 2000. Israeli Medical Association Journal, 6, 403-407. Tarabeia. J., Baron-Epel, O., Barchana, M., Liphshitz, I., Ifrah, A., Fishler, Y.& Green, M.S. (2007). A comparison of trends in incidence and mortality rates of breast cancer, incidence to mortality ratio and stage at diagnosis between Arab and Jewish women in Israel, 1979-2002. European Journal of Cancer Prevention, 16, 36-42. Tarabeia, J., Nitzan-Kaluski, D., Barchana, M., Baron-Epel, O., Ifrah, A., Fishler, Y. & Green, M.S. (2008). Increasing lung cancer rates among Israeli Arab men reflects a change in the earlier paradox of low rates together with high smoking prevalence. European Journal of Cancer Prevention, 17, 291-6. Verge, C.F. et al. (1998). Evidence for oligogenic inheritance of type 1 diabetes in a large Bedouin Arab family. Journal of Clinical Investigation, 102, 1569-75. Wahdan, M.H. (1996). The epidemiological transition. Eastern Mediterranean Health Journal 1996, 2, 8-20. Woo, K.S. & Donnan, S.P. (1989) Epidemiology of coronary arterial disease in the Chinese. International Journal of Cardiology, 24, 83–93. Yusuf, S., Reddy, S., Ounpuu, S. & Anand, S. (2001) Global burden of cardiovascular diseases: part I: general considerations, the epidemiologic transition, risk factors, and impact of urbanization. Circulation, 104, 2746-53. Zimlichman, E., Kochba, I., Mimouni, F.B., Shochat, T., Grotto, I., Kreiss, Y. & Mandel, D. (2005) Smoking habits and obesity in young adults. Addiction,100, 1021-5.

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Title

PART 3

REDUCING RISKS BY PREVENTION AND HEALTH PROMOTION

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Author

Obesity among migrant children and adolescents

Chapter 16

Obesity among migrant children and adolescents: a life-course perspective on obesity development

Anna Reeske & Jacob Spallek

1. Introduction: obesity among migrants This chapter provides an overview of the associations between factors related to migrant status, culture and socioeconomic position with overweight and obesity in the critical periods of obesity development. We discuss how useful a life course approach to migrant health is to explaining differences in obesity prevalence between migrants and non-migrants, and which conclusions can be drawn for primary obesity prevention approaches aiming to reduce health inequalities. Rising trends in obesity prevalence in the last few decades have been observed in many areas of the world and have turned obesity into a major determinant of morbidity and mortality. The distribution of overweight and obesity among adults in Europe shows considerable geographic variation, with the highest prevalences in Spain, Poland, Italy and the Czech Republic (Berghöfer et al., 2008). Among children, the highest overweight and obesity prevalences were found in the Mediterranean region and the British Isles (Manios & Costarelli, 2011; Cattaneo et al., 2010). In spite of considerable efforts, primary obesity prevention has delivered only disappointing results, at least among adults (Moreno et al., 2011). From a life course perspective there are several critical periods for the development of obesity – indeed, according to the foetal origin hypothesis, manifestation may already start in the prenatal phase (Barker, 1998). Different risk factors for obesity may also accumulate over the life course. Dietz suggested three critical periods: prenatal phase, adiposity rebound and childhood/adolescence (Dietz, 1994, 1997). Later, Gillman added the first year of life as a fourth critical period (Gillman, 2005). Although there is knowledge of certain risk factors for obesity, e.g. maternal gestational diabetes and increased gestational weight gain during pregnancy, as well

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as increased energy intake accompanied by reduced physical activity, the mechanisms acting from gestation to adolescence are not yet fully understood. Nevertheless, a multifactorial aetiology including biological, social, cultural and behavioural components seems to be established. If a particular population group, such as migrants, experiences higher rates of obesity than the non-migrant population, this might be an indication of differences in genetic and environmental factors as well as social deprivation or barriers in access to health care, among other factors. Numerous studies report a higher overweight and obesity prevalence among people with migrant backgrounds (e.g. Wang & Beydoun, 2007; Saxena et al., 2004; Cornelisse-Vermaat & van den Brink, 2007; Kumar et al., 2006; Will et al., 2005). Trends and characteristics in the United States show that immigrants tend to be disproportionaly affected among all ages (Wang and Beydoun, 2007; Bates, 2008; Barcenas, 2007). In European countries, risks of overweight and obesity are particularly elevated among migrants from non-western countries, e.g. Turkey and Morocco (Cornelisse-Vermaat & van den Brink, 2007; de Hoog et al., 2011). In Germany, 16 million persons (19.6%) of the total population have a migration background (Federal Statistical Office, 2009a). Turkish migrants comprise the largest group (about 3 million), followed by migrants from the former Soviet Union (2.9 million), former Yugoslavia and Poland (1.5 million each) (Federal Statistical Office, 2011). Nationwide (self-reported) obesity data indicate differences between migrants and non-migrants, while migrants of Turkish origin seem to be particularly affected (Table 1). These data also indicate a decrease of prevalences over generations and a convergence to the German population among migrants of Turkish origin. Among children aged 3 to 17 years overweight prevalence is highest in children with both parents originating from a foreign country, compared to children with only one parent from a foreign country and Germans without migrant background. Again, children with Turkish origin are even more affected. Health differentials between migrants and non-migrants are influenced by several factors including lifestyle and socioeconomic factors, genetic disposition, and the process of migration itself (Spallek et al., 2011). However, causes and mechanisms leading to differences in obesity among migrants and non-migrants are not yet understood, while they are important for the development of effective prevention programs. 2. A life course approach to migrant health Most work on migrant health does not offer an explicit life course perspective that takes into account issues arising in different life periods (Spallek et al., 2011). Life course epidemiology can be defined as the study of social or physical exposures during gestation, childhood, adolescence, young adulthood and adult life, with the

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Table 1: Overweight and obesity prevalences among children and adults of foreign (Turkish) origin in Germany by age and sex Adults (P90 (including obesity); migrant background according to migration experience of parents and country of origin.

aim of examining their long-term effects on health (Kuh & Ben Shlomo, 2004; Kuh et al., 2003). Life course epidemiology helps to understand the aetiology of diseases with an emphasis on timing (critical/sensitive periods), duration (accumulation), and temporal sequence (triggers/interactions) of exposures (Ben Shlomo and Kuh, 2002). This perspective posits that adult chronic disease can be the result of biological programming during critical periods in childhood and in utero, and that accumulated exposures during lifetime, as well as the temporal sequence of exposures during the life course, can affect health risks (Kuh and & Shlomo, 2004). How does the exposure to risks among migrants differ from that of the autochthonous population? From a life course perspective we can distinguish three main periods: (i) the period before migration, including in utero exposures and the critical phase of early childhood, (ii) the migration process itself and (iii) the period after migration. i. In the first period, migrants may be exposed to factors which are not faced by the non-migrated population in the host country, the effects of which may only become manifest later (e.g. higher risks for stomach cancer due to infection with Helicobacter pylori).

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ii. The process of migration itself may be associated with stress, which can increase the risks for specific psychiatric diseases or for CVD. iii. In the period after the immigration process, migrants often live in poorer socioeconomic conditions than the indigenous population of the host country and may face discrimination, which may have a cumulative affect on increasing disease risks. At the same time, however, migrants may have specific health benefits and resources (Spallek and Razum, 2008), e.g. a high level of reciprocity in their communities (White, 1997), or more favourable health behaviour, e.g. healthier nutrition, lower levels of smoking (Reiss et. al., 2010; Reeske et al., 2009), which can result in lower risks. Figure 1. Different exposures during the life course on the health of migrants (adapted from Spallek et al. 2011) History of parents

Migration

First generation

Offspring

Genes

Genes

Sex

Sex

Country of origin Individual, environmental and contextual exposures

Factors leading to migration War, natural disaster, political repression etc.

Process of migration Individual, environmental and contextual exposures

Health situation of descendants of migrants/ ethnic minority

Health situation of immigrant New home country Individual, environmental and contextual exposures

Home country Individual, environmental and contextual exposures

Figure 1 shows the conceptual framework for migration and health from a life course perspective proposed by Spallek et al. (2011). This approach shows the different exposures of migrants during the above three periods. Spallek et al. (2011) argue that the health situation of the offspring of immigrants can also be influenced by specific exposures. Differences in genetic endowment can be passed from parent to offspring. In addition, parents may pass on cultural beliefs and health behaviours (e.g. concerning nutrition, smoking and alcohol consumption) to their offspring, which can persist over generations. The socioeconomic conditions of the parents determine the situation of the offspring during childhood and may have a persisting influence in later life (Davey, Smith & Lynch, 2005). The health situation of the offspring of migrants thus differs from that of their parents and that of the autochthonous population.

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The life course approach can help to understand the underlying factors and exposures that determine the obesity risks of migrants and their offspring. We will now review empirical results concerning these factors and then combine the life course model for migrant health and the evidence into a specific life course approach to obesity among migrant populations. 3. A life course approach to obesity among migrant populations Figure 2 shows a conceptual framework for migration and obesity from a life course perspective. This model details differences between migrants and non-migrants in (mostly modifiable) factors and mechanisms acting in the three critical periods of Figure 2. Conceptual framework of life course approach to obesity among migrant populations Change in social position with duration of stay and over migrant generations SOCIAL INEQUALITY (income, education, occupation) Contextual, environmental factors

Health care factors

Parental factors

E.g. material and financial circumstances, housing and working conditions, health policy and service

E.g. material and financial circumstances, housing and working conditions, health policy and service

E.g. material and financial circumstances, housing and working conditions, health policy and service

Participation in social life, access to free time activities, quality of food, housing conditions

Different use, timing and quality of health care in country of origin

Later attendance of first antenatal visit and fewer visits, e.g. among women from Eastern Europe, Asia and Pakistan

Lower participation rate in medical examination programs after birth, e.g. among children from Turkey, former Soviet union and Arab and Islamic countries

Lower participation rate in medical examination programs with increasing age of child, e.g. among children from Turkey, former Soviet union and Arab and Islamic countries

High parental overweight due to higher prevalence in country of origin, e.g. in Turkey

Increased pre-pregnancy weight and GWG, e.g. among Turkish and Moroccan women Higher incidence of gestational diabetes, e.g. among Turkish women in Germany

Rapid weight gain of child in first 6 months, e.g. among children of Turkish and Moroccan origin

High prevalence of overweight and obesity, e.g. among parents originating from nonWestern countries (role model for children)

Genetic predisposition

Overweight / Obesity

Low birth weight in some migrant populations (assoc. with short gestational age, low SES) High birthweight

Physical activity

Dietary factors

Migration/ cultural related factors

Higher insufficiently physical activity in women compared to men, e.g. in Turkey Different food beliefs, dietary patterns and availability of food in country of origin

Changes in activity patterns over migrant generations, e.g. start in pregnancy

Changes in PA patterns over migrant generations, e.g. decrease of insufficiently PA in women from Turkey (over gen.)

Type and amount of PA, duration of TV watching, sleeping behaviour

-----------------D i e t a r y a c c u l t u r a t i o n-------------------Æ Short duration of breastfeeding E.g. altered glucose-insulin Higher intake of fat and or supplementary feeding and metabolism in utero sugar , e.g. among early introduction of solid food, children from Turkey and e.g. among Turkish women former SU (assoc. with low SES)

Region of origin (cultural beliefs, traditions, religion), Factors leading to migration (e.g. socioeconomic position, war, family reunion); Acculturation (cultural orientation Æ change in health beliefs and behaviour, „ethnic revival“ or convergence towards host population)

Period in country of origin 1st generation migrants

Pregnancy and birth

First year of life

Childhood/ adolescence

Offspring of migrants (2nd and 3rd generation)

Age, sex

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obesity development. The period before migration was added as further critical period, accounting for the factors in the country of origin in first generation migrants which might already determine the obesity risk in their offspring. With the help of this framework we attempt to disentangle the influence of cultural and migrant specific factors as well as socioeconomic factors in four critical periods of obesity development. 3.1 Socioeconomic factors in the development of (childhood) obesity Several investigations indicate that exposures are differentially distributed across socioeconomic groups over the life course and might have important effects on adult health (Davey et al., 2005). Many studies have shown a negative association between socioeconomic status and obesity (e.g. Sobal & Stunkard, 1989; Parsons et al., 1999; Lieb et al., 2009; O`Loughlin et al., 2007). As migration background is often associated with a lower socioeconomic position compared to the majority population and socioeconomic factors act in all periods of obesity development, we included social inequality as a separate level in the model. SES is a rather crude summary measure for several circumstances that might influence the energy balance via material circumstances, health behaviour and knowledge. For example, the family’s material circumstances are primarily determined by their income and directly affect the (daily) life of children (Dragano & Siegrist, 2006). These circumstances influence children’s eating habits, quality of food and physical activity, the location and quality of housing, etc. But there are also studies indicating a change in social position over migrant generations and with duration of stay in the host country (Hosper et al., 2011). When looking at the interaction effect of SES and migrant background on the obesity risk there are conflicting findings. For example, one birth cohort study with a sample of preschool children drawn from 20 large US cities found that the higher prevalences of obesity in ethnic groups were not explained by socioeconomic factors such as maternal education, household income or food security (Whitaker et al., 2006). A further US study did not find any ethnic differences in the association between childhood socioeconomic position and obesity in later life (Trotter et al., 2010). However, it remains unclear how far socioeconomic conditions determine obesity risks in critical periods of obesity development, and in particular to what extent they interact with cultural-related factors. Thus, we need to understand social and cultural processes in critical periods of obesity manifestation and also their cumulated effect over time and generations. 3.1.1 Period in country of origin In contrast to the offspring of migrants who are born in a host country, migrants themselves may be exposed to specific obesity promoting and protecting factors in their home country before the migration process (e.g. in terms of exposures in the prenatal phase such as restricted fetal growth or low birth weight, different nutrition habits, and use of health care system). The offspring of migrants may be con-

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fronted with these factors differently due to differences in health care and policy system as well as environmental and life style factors. These differences might lead to a higher risk and/or prevalence of overweight and obesity among first generation migrants. When migrating to the host country, they will take these (un)favourable risks and health behaviours with them. With increasing duration of stay and over generations, these risks might change due to new factors in the host country. Examples are the higher obesity prevalences observed in Turkish migrant women in Germany (Federal Statistical Office, 2009b) and among certain ethnic minority groups in the UK (Smith et al., 2011), converging over generations to the obesity prevalence of the autochthonous majority population. So far, evidence is lacking concerning the influence of obesity-related risk factors acting during the pre-migration period among first generation migrants on the risk of later obesity in these migrants and their offspring. Therefore, additional research is needed to investigate the influence of factors in the period of origin and their change over time in the host country. 3.1.2 Pre- and perinatal period The pre- and perinatal phase is critical for the manifestation of obesity, as studies have shown that certain parental and health-care factors can determine the later risk of obesity among children and adolescents. Compared to the autochthonous population, migrants tend to have higher risks of unfavourable pregnancy and birth outcomes (e.g. preterm birth and low birth weight). When it comes to explaining these differences, the question arises whether observed health differentials are due to factors associated with migrant background such as integration, acculturation and social position However, very little is known about the social and cultural processes that lead to differences in risk factors for obesity between migrants and their descendents, as well as compared to the autochthonous population. Studies suggest a change of socioeconomic position and a higher degree of cultural integration, as well as more favourable weight-related behaviours among the offspring of migrants (e.g. Hosper et al., 2011). However, the manifestation of differences between migrants and their descendents may start during pregnancy. Parental factors: Pre-pregnancy weight and weight gain of mother during pregnancy There is growing evidence that pre-pregnancy weight and both high and low gestational weight gain are independently associated with maternal and foetal complications during pregnancy as well as an increased risk of childhood obesity (Parsons et al. 1999; Power and Parsons 2000). Also, a high pre-pregnancy weight significantly increases the likelihood of having a macrosomic (large for gestational age) infant (Rosenberg et al., 2003). The risk of later childhood obesity seems to be particularly high when both parents are overweight or obese, but the association is stronger

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for maternal overweight (Power & Parsons, 2000). The association is strongest in early childhood, decreasing when the child reaches 9 years of age (Whitaker et al., 1997). Several studies suggest an association between higher maternal pre-pregnancy weight among migrants with higher prevalence of overweight (Mesman et al., 2009; Taveras et al., 2010). For example, in a multi-ethnic cohort in the Netherlands (ABCD study) maternal pre-pregnancy BMI was a strong predictor for overweight at the age of 2 and explained higher rates of overweight in children from Turkish and Moroccan origin (de Hoog et al., 2011). Furthermore, weight gain during the first 6 months of life contributed largely to the ethnic differences. In a prospective US study the observed relationships between ethnicity and gestational weight gain as well as rapid infant weight gain in the first six months were only minimally confounded by socioeconomic factors (5-10% decrease) (Taveras et al., 2010). In a recently published study using data from the German national child health survey, the odds ratio of childhood overweight for high gestational weight gain (GWG) was significantly elevated (OR = 1.16), while there was no statistically significant effect of low GWG on childhood overweight (von Kries et al., 2010). A further study using the same database, showed a considerable higher overweight prevalence among mothers originating from Turkey (53.6%) and the Arabic-Islamic countries (49.5%) compared to parents from Germany (34.2%) (Robert Koch Institute, 2008). However, the GWG was comparable between migrants (13.5 kg) and non-migrants (13.8 kg). Country specific data have not been reported yet (Bergman et al., 2007). These authors also demonstrated a social gradient in the association between parental overweight and childhood obesity: children with low social status and overweight parents showed the highest obesity prevalence (Kleiser et al., 2010; Bergman et al., 2007). When it comes to explaining the effect of ethnic differences in weight gain on childhood obesity in women from non-Western countries, higher prevalences of obesity, e.g. in Turkish migrant women compared to German women, and differences in cultural beliefs and practices related to food and activity during pregnancy may have an effect (Kumanyika, 2007). Rapid weight gain of infants may be due to supplementary feeding and early introduction of solid food that was reported for Turkish and Moroccan parents in the Netherlands (Bulk-Bunschoten et al., 2008; de Hoog et al., 2011), as well as a shorter duration of breastfeeding among Turkish mothers in Germany (Robert Koch Institute, 2008). However, cultural attitudes and beliefs may be part of a complex mechanism. An interaction of genetic factors, fetal programming due to abnormal metabolic environment in utero, and social/ environmental factors such as eating habits in early life are currently discussed. Health care factors Health outcomes among children and adolescents are partly determined by pregnancy and birth outcomes, which are influenced by both the amount and program-

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ming of antenatal care and the quality of services provided (Villar et al., 2001). For migrant women there are particular barriers to accessing antenatal services. They tend to begin antenatal visits later in pregnancy and make fewer visits compared to non-migrant women. For example, a literature review on social class, ethnicity and utilization of antenatal services in the United Kingdom reported that women of Asian origin attended their first antenatal visit later in pregnancy than Caucasian women (Rowe and Garcia, 2003). Petrou et al., (2001) found that Pakistani and Indian women kept far fewer antenatal appointments than did white British women. In Germany, migrant women also attend their first antenatal visit significantly later than non-migrant women (David et al., 2006). Among the late attenders after the 17th week of gestation, migrant women from Eastern Europe and Asia are overrepresented (Reeske et al., 2011). Data from a large prospective cohort in Amsterdam (2003–04) showed that women born abroad begin antenatal care later than women born in the Netherlands (Alderliesten et al., 2007). Among women from non-western countries such as Turkey, Ghana, Morocco, late utilization of services may be explained by lack of interpreting services and information about available health services, migrants’ low levels of education, multiparity and unwanted pregnancies. Over 40% of migrant women from Turkey and Ghana had only minimal Dutch language knowledge, making it difficult to communicate with the attending physician and to obtain pregnancy-related health information. Birth weight Birth weight as indicator of in utero growth has been found to be associated with obesity in later life (Parsons et al., 1999). The effect of a higher birth weight on later obesity remains stable even after adjustment for gestational age and parental obesity, suggesting genetic and intergenerational mechanisms. More substantial evidence is available on the association between gestational diabetes and subsequent higher birth weight due to an altered foetal programming of the appetite-regulation structure and functioning in the foetal brain (Gillman, 2005). In contrast, a lower birth weight is suggested to be associated with central obesity due to foetal undernutrition during middle and late gestation and a subsequent rapid postnatal weight gain (Barker, 1995). In Germany, mean birth weight does not differ significantly between different countries of origin. However, a high birth weight was associated with a higher risk of childhood overweight in all groups (Robert Koch Institute, 2008). Two large population-based cohort studies from the United Kingdom (Kelly et al., 2009) and the Netherlands (Troe et al., 2007) reported a significantly lower birth weight for children with a migration background than for non-migrant children. In the Netherlands, shorter gestational age and lower parental height constitute strong determinants of lower birth weight in the non-Dutch population. It is assumed that the influence of parental height is due to a mixture of genetic and environmental factors. Further studies are needed to clarify the impact of these factors. The au-

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thors also attribute differences in birth weight to socioeconomic factors (Kelly et al., 2009), although this conflicts with other studies in which socioeconomic factors were either not or only weakly associated with differences in in birth weight (Teitler et al., 2007). In contrast to earlier studies, Kelly et al. used more indicators of socioeconomic status (e.g. household income, lone parent household, highest academic qualification) and found that they had an influence on birth weight in black Caribbean, black African, Bangladeshi and Pakistani infants, whereas maternal factors had a stronger influence in other migrant groups (Indian and Bangladeshi infants). However, in spite of a positive change in socioeconomic position in many migrant groups, Harding et al. could not find an increase in birth weights across generations among several migrant groups in the UK (Harding et al., 2004). Although socioeconomic status has some effects, the specific pathways leading to lower birth weight are still unclear. 3.1.3 First year of life Dietary factors: Infant feeding Long-term effects of nutrition have been shown especially for the critical periods during the first year of life and childhood. An imbalance of energy intake and physical activity is one of the established factors leading to the development of obesity. The relationship, however, is complicated, as there seem to be further important dietary factors besides caloric intake, including dietary composition, energy density and food preferences as well as infant feeding methods. Although results are conflicting, duration of breastfeeding has been reported to have a protective effect on risk of overweight and obesity in childhood and later life in several studies (Arenz et al. 2004; Harder et al. 2005; Koletzko et al., 2010). According to the ‘early protein hypothesis’, formula milk has a higher energy density compared to breastmilk leading to a higher protein supply that may partly explain the higher risk of obesity in formula-fed children (Koletzko et al., 2010). Another possible explanation is that breastfeeding might be related to other healthy behaviours or positive social circumstances of mothers who breastfeed that might also have a positive influence on the risk of obesity (CDC, 2007). Studies on ethnic differences in breastfeeding frequency reported conflicting research findings. However, prepregnant overweight and obesity as well as high weight gain during pregnancy and socioeconomic status are suggested to influence the continuation of breastfeeding at least among certain ethnic groups (e.g. Kugyelka et al., 2004, Taveras et al., 2010). In Germany, ethnic differences in duration of infant feeding were observed. Women originating from the former Soviet Union and Arabic-Islamic countries breastfeed more frequently and longer than German women. Among women from Turkey, the prevalence of breastfeeding is high, but the duration is comparatively short. In contrast, women originating from Poland breastfeed less frequently and for a shorter time as compared to German women (Robert Koch Institute, 2008).

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While some studies identified a protective effect for breastfeeding that was rather low, the prevention potential of breastfeeding is obvious and promotes psychosocial aspects of the mother-child relationship. In particular, prevention approaches should consider cultural beliefs as well as practical constraints affecting breastmilk and breastfeeding. Health care factors Medical examinations after birth are crucial in order to detect developmental disorders in early life. This is particularly true for prevention of obesity. In Germany participation rates for medical examinations of children differed between migrants and non-migrants as well as between social groups (Kamtsiuris et al., 2007). The overall participation rate for the five recommended examinations in the first two years of life was 86.2 % among children with German parents and 64.5 % among children when both parents had a migration background (Robert Koch Institute, 2008). The rate was lowest among children with parents originating from the former Soviet Union (60.4%), Arabo-Islamic countries (64.4%) and Turkey (68.5%). These differences became greater with increasing age of migrant children and among children from families with low socioeconomic status. Possible reasons for these differences are problems with the majority language of the host country, access barriers to and insufficient knowledge of the health care system, as well as low education and differences in the quality of health services (Razum et al., 2011). Increase of participation rates in antenatal care and early medical exams after birth among migrants and socially deprived families may be an important factor for the prevention of obesity. 3.1.4 Period of childhood and adolescence This is an important critical period for obesity development (Gillman, 2005). Changes in physical activity, food choices and quality, eating culture, psychosocial factors and socioeconomic factors are particularly important. Dietary factors The influence of dietary factors in childhood and adolescence is not yet fully understood (see e.g. Lanfer et al., 2010). However, dietary patterns and physical activity contribute to the daily energy balance and should therefore be considered. Energy density, the specific content of meals, and other factors such as setting, frequency and speed of food intake are also important factors. The social setting of meals in homes and schools also determines a child’s eating habits, as do commercial pressures. Parents as role models can influence the risk of childhood obesity. However, sparse evidence is available with respect to long-term effects of social and environmental factors of eating culture on the development of overweight and obesity (Gillman, 2005). Several studies from the US reported ethnic differences in fast food and sugarsweetened soft drink consumption, e.g. lower intake of fruits and vegetables ac-

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companied by higher levels of sedentary behaviour and high fast food and caloric consumption among African American and Latino compared to white children and adolescents, often independent of socioeconomic status (Schmidt et al., 2006 and Delva et al., 2007 cited in Kumanyika, 2008). In contrast, observed relationships between race/ethnicity and dietary patterns in another US prospective study were modestly attenuated (>20%) by socioeconomic factors (Taveras et al., 2010). Using data from a German survey among children and adolescents, children from Turkey and the former Soviet Union in particular showed less favourable dietary behaviour compared to non-migrants. They showed the highest intake of soft drinks, white bread, fried or baked potatoes and sweets (Robert Koch Institute, 2007). Furthermore, the authors reported an association between SES and intake of high-calorie foods and soft drinks. Among children with low SES the intake of higher caloric food was much higher as compared to children from families with middle or high social status (41.0% vs. 30.2%, and 25.9%) (Kleiser et al., 2010). Data collected from pupils in the UK MRC DASH study showed that poor dietary practices such as skipping breakfast were more common among ethnic minorities compared to the Caucasian pupils. At the same time ethnic minority children born in the UK showed more obesity-promoting dietary behaviours than children who had migrated (Harding et al., 2008). In this context a recently published systematic review suggests a decline in healthy dietary practices over the generations in certain ethnic groups in Europe. Especially with respect to Turkish migrants, several studies showed a change in diets towards patterns including lesser fruit and vegetable consumption accompanied by a higher amount of fruit syrups and ice cream consumption (Gilbert & Khokar, 2008). Major factors for the change of dietary patterns are reported to be young age and in particular the second migrant generation. In the process of acculturation the offspring of migrants tend to neglect traditional food and converge to Western life style habits and dietary practices of the host country. Western-style food is particularly rich in fat and sugar resulting in higher obesity risk. Th term ‘dietary acculturation’ describes the process when migrants adopt the dietary patterns and food choices of their host country (Satia, 2010). It is suggested that a change in environmental and psychosocial factors, including changes in taste preferences, food choices and preparation as well as access to food, lead to a change in dietary patterns (e.g. maintenance of traditional eating, adoption of host country or bicultural eating behaviours (Dekker et al., 2011). Furthermore, in a ‘nutrition transition’ dietary changes can be accompanied by changes in physical activity and obesity trends (Satia, 2010). These processes might differ between ethnic groups, but they should be kept in mind when explaining obesity differences between these groups. These results indicate a need for investigating potential interactions between race/ethnicity and SES as well as lifestyle or culture-related determinants of dietary patterns.

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Physical activity Some longitudinal studies point towards a protective effect of physical activity on obesity in later life, but results are inconsistent (Reichert et al., 2009; Power & Parsons, 2000). The influence on obesity is mainly determined by type and duration of physical activity. However, to determine the minimal level of physical activity to achieve this protective effect is difficult, particularly among children (Graf, 2010). Data from Germany show that more than 76% of 3 to 10-year old children are physically active in a sports club, more than 36% even more than 3 times a week (Lampert et al., 2007). However, several authors also showed that the level of physical activity was constantly decreasing in puberty and adolescence (Dumith et al., 2011). The level of physical activity is dependent on social status: boys from families with low SES are 3 times (girls even 4 times) less physically active as compared to boys from families of high SES. The social gradient was even stronger when comparing social status groups with respect to physical activity in a sports club (Lampert et al., 2007). Other studies indicate that physical inactivity in children is associated with several parental factors, including education, migration background, being a single parent, family support, and parental physical activity (Graf, 2010). Ethnic differences in physical activity with regard to obesity were demonstrated in several studies from the US and European countries (Gordon-Larsen et al., 2003; Williams et al., 2011). The former reported that higher consumption of fast food and fat in African-American girls was accompanied by lower levels of physical activity compared to white girls (Kimm et al., 2000). Taveras et al. reported that adjusting for socioeconomic factors attenuated the crude odds ratio for the association between child race/ethnicity and average daily television viewing (≥2h) by 20-30% and substantially for having a television in the room where the child slept (69% decrease for African-American children) (Taveras et al., 2010). Recent studies again suggested changes in activity patterns over migrant generations (Taverno et al., 2010; Hosper et al., 2007; Hosper et al., 2011; Smith et al., 2011). Prevalence of insufficient physical activity among Turkish women in the Netherlands declined from first to second generation and converged to the Dutch population, while there was an increase in Moroccan women over generations. Among Turkish men, prevalences were increased and remained stable over generations (Hosper et al., 2007). In a UK study based on data of the Health Survey for England, the odds of three or fewer occasions of moderate activity in the past four weeks were significantly higher among first generation migrants of different ethnic minorities compared to the white reference group than the odds in second generation migrants. The prevalence of being physically inactive converged over generations to frequencies found in the white population in all minority groups (Smith et al., 2011).

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5. Conclusion The risk of developing obesity and overweight among migrants and their offspring is influenced by several factors during the life course. Migrants show differences in several obesity-promoting factors, in particular during critical periods in the prenatal period and in early childhood. The risk for obesity and overweight of migrants is determined by factors which operate in different phases of the life course and which can differ considerably from autochthonous populations. These findings can partly explain the increased obesity prevalence among some migrant populations in Western countries. Researchers studying obesity risks of migrants should consider not only factors in the country of destination, but also factors from the country of origin, which possibly act during migrants’ early childhood. Among the offspring of migrants, specific factors like for example parental factors that are passed on, cultural aspects, or the effect of acculturation, should be taken into account when investigating obesity risks. So far, not all aspects of our new multicausal framework have been empirically confirmed. Additional research is needed to understand the associations and interactions of migrant background and socioeconomic status as well as their accumulation and change over the life course. However, the findings and the life course concept depicted in Figure 2 illustrate several opportunities to influence obesity risks by socioeconomic and culturally-sensitive prevention. In particular, targetgroup-specific interventions in specific settings and during certain critical periods from pregnancy to childhood and adolescence should be considered. Examples are targeted programmes that focus on increasing breastfeeding frequency and duration among specific migrant groups or culturally sensitive information campaigns about healthy nutrition of children and adolescents. Apart from the specific exposures that are associated with migration, socioeconomic inequalities seem to have a major impact on the development of obesity among children and adults also in migrant populations. Tackling these inequalities more effectively could play a major role in the reduction of obesity risks among migrants – and the general population. Future research is needed to gain a deeper understanding of the mechansims of how factors related to migrant status and socioeconomic status lead to obesity risk. This is a requirement for developing prevention programmes which aim at a sustainable and long-term reduction of obesity risk. References Alderliesten, M. E., Vrijkotte, T. G., van der Wal, M. F. & Bonsel, G. J. (2007). Late start of antenatal care among ethnic minorities in a large cohort of pregnant women. BJOG: An International Journal of Obstetrics and Gynaecology, 114(10), 1232-1239. Arenz, S., Ruckerl, R., Koletzko, B. & von Kries, R., (2004). Breastfeeding and childhood

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obesity—systematic review. International Journal of Obesity and Related Metabolic Disorders, 28, 1247-1256. Barcenas, C. H., Wilkinson, A. V., Strom, S. S., Cao, Y., Saunders, K. C., Mahabir, S., et al., (2007). Birthplace, years of residence in the United States, and obesity among Mexican-American adults. Obesity (Silver Spring), 15, 1043-1052. Barker, D. J. P. (1998). Mothers, babies and health in later life. Edinburgh: Churchill Livingstone. Bates, L. M., Cevedo-Garcia, D., Alegria, M & Krieger, N. (2008). Immigration and generational trends in body mass index and obesity in the United States: results of the National Latino and Asian American Survey, 2002-2003. American Journal of Public Health, 98, 70-77. Ben-Shlomo, Y. & Kuh, D. (2002). A life course approach to chronic disease epidemiology: conceptual models, empirical challenges and interdisciplinary perspectives. International Journal of Epidemiology, 31, 285-293. Berghöfer, A., Pischon, T., Reinhold, T., Apovian, C. M., Sharma, A.M. & Willich, S.N. (2008). Obesity prevalence from a European perspective: a systematic review. BMC Public Health, 8, 200. Bergmann, K. E., Bergmann, R. L., Ellert, U. & Dudenhausen, J. W. (2007). Perinatal risk factors for long-term health. Results of the German Health Interview and Examination Survey for Children and Adolescents (KiGGS). Bundesgesundheitsblatt, 50(5), 670-676. Bulk-Bunschoten, A. M., Pasker-de Jong, P. C., van Wouwe, J. P. & de Groot, C. J. (2008). Ethnic variation in infant-feeding practices in the Netherlands and weight gain at 4 months. Journal of Human Lactation, 24(1), 42-49. Cattaneo A, Monasta L, Stamatakis E, Lioret S, Castetbon K, Frenken F,…Brug, J. (2010). Overweight and obesity in infants and pre-school children in the European Union: a review of existing data. Obesity Reviews, 11(5), 389-398. CDC, Division of Nutrition and Physical Activity (2007). Research to Practice Series No.4: Does breastfeeding reduce the risk of pediatric overweight? Atlanta: Centers for Disease Control and Prevention. Cornelisse-Vermaat, J. R. & van den Brink, H. M. (2007). Ethnic differences in lifestyle and overweight in the Netherlands. Obesity (Silver Spring), 15(2), 483-493. Davey Smith, G. & Lynch, J. (2005). Life course approaches to socioeconomic differentials in health. In: Kuh, D., Ben-Shlomo, Y. (Eds.) A life course approach to chronic disease epidemiology. New York: Oxford University Press. David, M., Pachaly, J. & Vetter, K. (2006). Perinatal outcome in Berlin (Germany) among immigrants from Turkey. Archives of Gynecology and Obstetrics, 274(5), 271-278. de Hoog, M. L., van Eijsden, M., Stronks, K., Gemke, R.J. & Vrijkotte, T. G. (2011). Overweight at age two years in a multi-ethnic cohort (ABCD study): the role of prenatal factors, birth outcomes and postnatal factors. BMC Public Health, 11, 611. Dekker, L. H., Snijder, M. B., Beukers, M. H., de Vries, J. H., Brants, H. A., de Boer, E. J., van Dam, R. M., Stronks, K & Nicolaou, M. (2011). A prospective cohort study

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of dietary patterns of non-western migrants in the Netherlands in relation to risk factors for cardiovascular diseases: HELIUS-Dietary Patterns. BMC Public Health, 11, 441. Dietz, W. H. (1994). Critical periods in childhood for the development of obesity. American Journal of Clinical Nutrition 59, 955-959. Dietz, W. H. (1997). Periods of Risk in Childhood for the Development of Adult Obesity – What Do We Need to Learn?. Journal of Nutrition, 127, 1884S-1886S. Dragano, N. & Siegrist, J. (2006). Die Lebenslaufperspektive gesundheitlicher Ungleichheit: Konzepte und Forschungsergebnisse. In: Richter, M. & Hurrelmann, K. (Eds.) Gesundheitliche Ungleichheit. Grundlagen, Probleme, Perspektiven. Wiesbaden: VS Verlag für Sozialwissenschaften, 255-270. Dumith, S. C., Gigante, D. P., Domingues, M. R. & Kohl, H. W. (2011). Physical activity change during adolescence: a systematic review and a pooled analysis. International Journal of Epidemiology, 40(3), 685-698. Federal Statistical Office (Destatis) (2011). The population with a migrant background in Germany. Results of the microcencus 2009. Wiesbaden: Federal Statistical Office. Gilbert, P. A. & Khokhar, S. (2008). Changing dietary habits of ethnic groups in Europe and implications for health. Nutrition Reviews, 66(4), 203-215. Gillmann, M. W. (2005). A life course approach to obesity. In: Kuh, D. & Ben-Shlomo, Y (Eds.) A life course approach to chronic disease epidemiology. New York: Oxford University Press. Gordon-Larsen, P., Harris, K. M., Ward, D. S. & Popkin, B. M. (2003). National Longitudinal Study of Adolescent Health. Acculturation and overweight-related behaviors among Hispanic immigrants to the US: the National Longitudinal Study of Adolescent Health. Social Science & Medicine, 57(11), 2023-2034. Graf, C. (2010). [Juvenile obesity and the role of physical activity and inactivity]. Bundesgesundheitsblatt, 53(7), 699-706. Harding, S., Teyhan, A., Maynard, M. J. & Cruickshank, J. K. (2008). Ethnic differences in overweight and obesity in early adolescence in the MRC DASH study: the role of adolescent and parental lifestyle. International Journal of Epidemiology, 37(1), 16272. Harding, S., Rosato, M. G. & Cruickshank, J. K. (2004). Lack of change in birthweights of infants by generational status among Indian, Pakistani, Bangladeshi, Black Caribbean, and Black African mothers in a British cohort study. International Journal of Epidemiology, 33(6), 1279-1285. Harder, T., Bergmann, R., Kallischnigg, G. & Plagemann, A. (2005). Duration of breastfeeding and risk of overweight: a meta-analysis. American Journal of Epidemiology, 162(5), 397– 403. Hosper, K., Nicolaou, M., van Valkengoed, I., Nierkens, V. & Stronks, K. (2011). Social and cultural factors underlying generational differences in overweight: a crosssectional study among ethnic minorities in the Netherlands. BMC Public Health, 11, 105.

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Hosper, K., Nierkens, V., Nicolaou, M. & Stronks, K. (2007). Behavioural risk factors in two generations of non-Western migrants: do trends converge towards the host population? European Journal of Epidemiology, 22, 163-172. Kamtsiuris, P., Bergmann, E., Rattay, P. & Schlaud, M. (2007). [Use of medical services. Results of the German Health Interview and Examination Survey for Children and Adolescents (KiGGS)]. [Article in German]. Bundesgesundheitsblatt, 50(5-6), 836850. Kelly, Y., Panico, L., Bartley, M., Marmot, M., Nazroo, J. & Sacker, A. (2009). Why does birthweight vary among ethnic groups in the UK? Findings from the Millennium Cohort Study. Journal of Public Health (Oxf), 31(1), 131-137. Kimm, S. Y., Glynn, N. W., Kriska, A. M., Fitzgerald, S. L., Aaron, D. J., Similo, S. L., McMahon, R. P., Barton, B. A. (2000). Longitudinal changes in physical activity in a biracial cohort during adolescence. Medicine & Science in Sports & Exercise, 32(8), 1445-1454. Kleiser, C., Schaffrath, R. A., Mensink, G. B., Prinz-Langenohl, R. & Kurth, B. M. (2009) Potential determinants of obesity among children and adolescents in Germany: results from the cross-sectional KiGGS Study. BMC Public Health, 9, 46. Koletzko, B., Schiess, S., Brands, B., Haile, G., Demmelmair, H., von Kries, R. & Grote, V. (2010). [Infant feeding practice and later obesity risk. Indications for early metabolic programming]. Bundesgesundheitsblatt, 53(7), 666-673. Kuh, D. & Ben-Shlomo, Y. (Eds.) (2004). A life course approach to chronic disease epidemiology. Oxford: Oxford University Press. Kuh, D. & Ben-Shlomo, Y., Lynch, J., Hallqvist, J. & Power, C. (2003). Life course epidemiology. Journal of Epidemiology & Community Health, 57, 778-783. Kugyelka, J. G., Rasmussen, K. M. & Frongillo, E. A. (2004). Maternal obesity is negatively associated with breastfeeding success among Hispanic but not Black women. Journal of Nutrition, 134(7), 1746-1753. Kumanyika, S. K. (2008). Environmental influences on childhood obesity: ethnic and cultural influences in context. Physiology & Behaviour, 94(1), 61-70. Kumar, B. N., Meyer, H. E., Wandel, M., Dalen, I. & Holmboe-Ottesen, G. (2006). Ethnic differences in obesity among immigrants from developing countries, in Oslo, Norway. International Journal of Obesity, 30, 684–690. Lampert, T., Mensink, G. B., Rohman, N. & Woll, A. (2007). [Physical activity among children and adolescents in Germany. Results of the German Health Interview and Examination Survey for Children and Adolescents (KiGGS)]. Bundesgesundheitsblatt, 50, 600-608. Lanfer, A., Hebestreit, A. & Ahrens, W. (2010). [Diet and eating habits in relation to the development of obesity in children and adolescents]. Bundesgesundheitsblatt, 53(7), 690-698. Lieb, D. C., Snow, R. E. & DeBoer, M. D. (2009). Socioeconomic factors in the development of childhood obesity and diabetes. Clinical Journal of Sport Medicine, 28(3), 349-378.

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Manios, Y. & Costarelli, V. (2011). Childhood Obesity in the WHO European Region. In: Moreno, L. M., Pigeot, I. & Ahrens, W. (Eds.) Epidemiology of obesity in children and adolescents – Prevalence and etiology (pp. 43-68). New York: Springer. Mesman, I., Roseboom, T. J., Bonsel, G. J., Gemke, R. J., van der Wal, M. F. & Vrijkotte, T. G. (2009). Maternal pre-pregnancy body mass index explains infant’s weight and BMI at 14 months: results from a multi-ethnic birth cohort study. Archives of Disease in Childhood, 94(8), 587-595. Moreno, L. A., Pigeot, I. & Ahrens, W. (2011). Epidemiology of obesity in children and adolescents – Prevalence and etiology. New York: Springer. O’Loughlin, J., Maximova, K., Tan, Y. & Gray-Donald, K. (2007). Lifestyle risk factors for chronic disease across family origin among adults in multiethnic, low-income, urban neighborhoods. Ethnicity & Disease, 17(4), 657-663. Parsons, T. J., Power, C., Logan, S. & Summerbell, C. D. (1999). Childhood predictors of adult obesity: a systematic review. International Journal of Obesity and Related Metabolic Disorders, 23 Suppl 8, 1-107. Petrou, S., Kupek, E., Vause, S. & Maresh, M. (2001). Clinical, provider and sociodemographic determinants of the number of antenatal visits in England and Wales. Social Science & Medicine, 52(7), 1123-1134. Power, C. & Parsons, T. (2000). Nutritional and other influences in childhood as predictors of adult obesity. Proceedings of the Nutrition Society, 59(2), 267-272. Review. Puthussery, S., Twamley, K., Harding, S., Mirsky, J., Baron, M. & Macfarlane, A. (2008). “They’re more like ordinary stroppy British women”: attitudes and expectations of maternity care professionals to UK-born ethnic minority women’. Journal of Health Services Research & Policy, 13(4), 195-201. Razum, O., Reeske, A. & Spallek, J. (Eds.) (2011). Gesundheit von Schwangeren und Säuglingen mit Migrationshintergrund. Essen: Peter Lang. Reichert, F. F., Baptista Menezes, A. M., Wells, J. C., Carvalho Dumith, S. & Hallal, P.C. (2009). Physical activity as a predictor of adolescent body fatness: a systematic review. Sports Medicine 39, 279–294. Reiss, K., Spallek, J. & Razum, O. (2010). ‘Imported risk’ or ‘health transition’? Smoking prevalence among ethnic German immigrants from the Former Soviet Union by duration of stay in Germany – analysis of microcensus data. International Journal of Equity in Health, 9, 15. Reeske, A., Kutschmann, M., Razum, O. & Spallek, J. (2011). Stillbirth differences according to regions of origin: An analysis of the German perinatal database, 20042007. BMC Pregnancy and Childbirth, 11, 63. Reeske, A., Spallek, J. & Razum, O. (2009). Changes in smoking prevalence among firstand second-generation Turkish migrants in Germany – an analysis of the 2005 Microcensus. International Journal of Equity in Health, 8, 26. Robert Koch Institute (Ed.) (2008). KiGGS 2003-2006: Children and adolescents with a migration background in Germany. Berlin: Robert Koch Institute. Robert Koch Institute (Ed.) (2007). Ernährungsverhalten von Kindern und Jugendlichen

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mit Migrationshintergrund – KiGGS-Migrantenauswertung. Endbericht. Berlin: Robert Koch Institute. Rosenberg, T. J., Garbers, S., Chavkin, W. & Chiasson, M. A. (2003). Prepregnancy weight and adverse perinatal outcomes in an ethnically diverse population. Obstetrics & Gynecology, 102, 1022-1027. Rowe, R. E. & Garcia, J. (2003). Social class, ethnicity and attendance for antenatal care in the United Kingdom: a systematic review. Journal of Public Health Medicine, 25(2), 113-119. Satia, J. A. (2010). Dietary acculturation and the nutrition transition: an overview. Applied Physiology Nutrition and Metabolism, 35, 219-23. Saxena, S., Ambler, G., Cole, T. J. & Majeed, A. (2004). Ethnic group differences in overweight and obese children and young people in England: cross sectional survey. Archives of Disease in Childhood, 89, 30–36. Smith, N. R, Kelly, Y. J. & Nazroo, J. Y. (2011). The effects of acculturation on obesity rates in ethnic minorities in England: evidence from the Health Survey for England. European Journal of Public Health. [Epub ahead of print] Sobal, J. & Stunkard, A. J. (1989). Socioeconomic status and obesity: a review of the literature. Psychological Bulletin, 105(2), 260-275. Spallek, J., Zeeb, H. & Razum, O. (2011). What do we have to know from migrants’ past exposures to understand their health status? A life course approach. Emerging Themes in Epidemiology, 8(1), 6. Spallek, J. & Razum, O. (2008). Erklärungsmodelle für die gesundheitliche Situation von Migrantinnen und Migranten. In: Bauer, U., Bittlingmayer, U. H. & Richter, M. (Eds.) Health inequalities: Determinanten und Mechanismen gesundheitlicher Ungleichheit (pp. 271-290). Wiesbaden: VS Verlag. Taveras, E. M., Gillman, M. W., Kleinman, K., Rich-Edwards, J. W. & Rifas-Shiman, S. L. (2010). Racial/ethnic differences in early-life risk factors for childhood obesity. Pediatrics, 125(4), 686-95. Taverno, S. E, Rollins, B. Y. & Francis, L. A. (2010). Generation, language, body mass index, and activity patterns in Hispanic children. American Journal of Preventive Medicine, 38(2), 145-153. Teitler, J. O., Reichman, N. E., Nepomnyaschy, L. & Martinson, M. (2007). A cross-national comparison of racial and ethnic disparities in low birthweight in the United States and England. Pediatrics, 120(5), e1182-e1189. Troe, E. J., Raat, H., Jaddoe, V. W., Hofman, A., Looman, C. W., Moll, H. A., Steegers, E. A., Verhulst, F. C., Witteman, J. C. & Mackenbach, J. P. (2007). Explaining differences in birthweight between ethnic populations. The Generation R Study. BJOG: An International Journal of Obstetrics and Gynaecology, 114(12), 1557-1565. Trotter, L. J., Bowen, D. J. & Beresford, S. A. (2010). Testing for racial/ethnic differences in the association between childhood socioeconomic position and adult adiposity. American Journal of Public Health, 100(6), 1088-1094. Villar, J., Carroli, G., Khan-Neelofur, D., Piaggio, G. & Gulmezoglu, M. (2001). Patterns

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of routine antenatal care for low-risk pregnancy. Cochrane Database of Systematic Reviews, 4, CD000934. von Kries, R., Ensenauer, R., Beyerlein, A., Amann-Gassner, U., Hauner, H. & Rosario, A.S. (2010). Gestational weight gain and overweight in children: Results from the cross-sectional German KiGGS study. International Journal of Pediatric Obesity. [Epub ahead of print]. Wang, Y. & Beydoun, M. A. (2007). The Obesity Epidemic in the United States—Gender, Age, Socioeconomic, Racial/Ethnic, and Geographic Characteristics: A Systematic Review and Meta-Regression Analysis. Epidemiologic Reviews, 29, 6–28. Williams, E. D., Stamatakis, E., Chandola, T. & Hamer, M. (2011). Assessment of physical activity levels in South Asians in the UK: findings from the Health Survey for England. Journal of Epidemiology & Community Health, 65(6), 517-521. Whitaker, R. C. & Orzol, S. M. (2006). Obesity among US urban preschool children: relationships to race, ethnicity, and socioeconomic status. Archives of Pediatrics & Adolescent Medicine, 160(6), 578-84. Whitaker, R. C., Wright, J. A., Pepe, M. S., Seidel, K. D. & Dietz, W. H. (1997). Predicting obesity in young adulthood from childhood and parental obesity. The New England Journal of Medicine, 337(13), 869-73. White, J. B. (1997). Turks in the New Germany. American Anthropologist, 99, 754-769. Will, B., Zeeb, H. & Baune, B. T. (2005). Overweight and obesity at school entry among migrant and German children: cross-sectional study. BMC Public Health, 5, 45.

Health promotion interventions for migrant groups

Chapter 17

Health promotion interventions for migrant groups: the need for a strategic approach and key principles

Gina Netto

1. Introduction Many studies on migrant health have tended to concentrate on understanding patterns of mortality and morbidity across different groups, and on comparing the extent to which they are consistent with or differ from the majority population. Several models of explanation have been proposed to account for differences, including socioeconomic factors, length of time since migration, culture, beliefs, health-related behaviour, racism, biology and health service access and use (Davey Smith et al., 2000). Much less attention has been paid to examining alterable causes of health-related knowledge, behaviour and attitudes, and the effectiveness of health promotion, educational initiatives and preventative services in countering these causes. This is despite increasing recognition of the major role played by effective health promotion in reducing excess mortality and morbidity; countering major risk factors; influencing determinants of health and reducing the costs of the burden of ill health to the health system. Consequently, the evidence base for developing effective health promotion interventions is still in the developmental stages, and many competing theories have been proposed for changing health behaviour (Aboud, 2009). Bhopal (2006) argues that pending the development of an evidence base for minority ethnic health initiatives, it is important to adapt existing interventions. However, it might also be argued that adapting existing interventions in advanced industrialised countries for migrant and minority groups might be viewed as ‘Eurocentric’ in not accounting for important differences in underlying health-related knowledge, beliefs and

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attitudes among these groups. Further, there is some consensus that it is important to address deep-rooted influences on health behaviour in ‘at-risk’ groups, including cultural influences and structural factors, such as disadvantaged socio-economic status (Greenhalgh et al., 1998; Resnicow et al., 1999; McAllister and Farquhar 1992; Pasick et al., 1996). This chapter argues for a strategic approach to planning health promotion interventions for minority ethnic communities based on the findings of previous evaluative research on a targeted coronary heart disease intervention (Netto et al., 2007) and a systematic review of health promotion interventions for some of these groups (Netto et al., 2008). It also offers five principles as fundamental to designing and implementing health promotion interventions intended to bring about positive changes within these communities (Netto et al., 2010) and then considers the implications for health promotion policy, practice and research. These principles have mainly been designed on the premise that a deep knowledge of such communities is essential for the planning and development of any targeted intervention. They have been formulated following a rigorous international systematic review of health promotion interventions for three minority ethnic groups – Pakistanis, Chinese and Indians – which are the largest groups in Scotland, UK, where this study was funded and carried out. The study focused on interventions which sought to influence knowledge, behaviours and attitudes related to diet, physical activity and smoking cessation, all of which can prevent and reduce the risk of major causes of mortality, including coronary heart disease and cancer. Before we consider the need for a strategic approach for planning health promotion interventions for minority ethnic and migrant groups, it would be useful to refer to an important conceptual tool that will be referred to in the remainder of the chapter, that is, ethnicity, how it relates to the process of acculturation and the arguments in favour of interventions that are targeted for one or more minority or migrant groups. 2. Ethnicity, acculturation and influences on health behaviour Ethnicity is a key aspect of identity – self-identity, as well as that ascribed by others, – as well as a form of social stratification. Definitions of ethnicity generally point to notions of shared descent, culture, language or religion with other members of the group which serve to differentiate members of one group from those of other groups (Platt, 2007). It is viewed as dynamic, fluid and situational, influenced by power relations and access to resources. Ethnicity may also be viewed as relational; created, sustained or redefined through factors both external to ethnic groups as well as those within the groups (Barth, 1969). This relational aspect of ethnicity, may be linked to the process of acculturation, as minority ethnic groups or migrant communities continue to reside in a geographical area over time and

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with varying degrees between and within such communities, orientate some of their underlying health-related values, attitudes or behaviour to that of the majority population. In support of this view, Netto et al’s (2007) study of Asian (defined as those whose origins can be traced to the Indian sub-continent) user perspectives of a targeted CHD intervention revealed the multiple factors acting at individual, community and societal levels that influence behavioural change. This involved an examination of the complex interplay between limited knowledge of disease, risk factors and preventive measures, ingrained health beliefs and attitudes relating to the disease, social deprivation, lifestyle and environmental changes following migration, adherence to community norms, threats to traditional values and racial hostility. The longitudinal nature of this study illustrated the persistent nature of cultural beliefs and attitudes, community norms, socio-economic circumstances, and structural forces that act as barriers to change in ‘at-risk’ communities, indicating that unless attention is focused on these factors, efforts to reduce the disease in ‘high risk’ groups are doomed to be limited. This study concurs with others (Lewin et al., 1992; Kelly, 2005) in arguing that although greater understanding of the nature of disease on the part of ‘at-risk’ groups is a necessary precursor to behavioural change, the most important predictors of outcome and compliance are users’ beliefs about the cause and course of their disease, and the ways that the cultural milieu impact on health behaviour. Similarly emphasising the importance of user perspectives and beliefs, Greenhalgh et al. (1998) too have argued that rather than designing education programmes to rectify ‘deficiencies’ in knowledge or ‘incorrect’ behaviour, health promotion programmes should attempt to build on the beliefs, attitudes and behaviours that already exist within the target group to promote healthier lifestyles, improve quality of life and address practical barriers to positive health. Consistent with this approach, Resnicow et al. (1999) distinguished between interventions adapted at ‘surface structure’ and those adapted at ‘deep structure’. The former match interventions to observable characteristics, such as people and language, while the latter interventions engage with cultural, social, environmental and psychological forces that influence health behaviour. They argue that while the former will increase the ‘receptivity’ of health-related messages, it is only the latter which will impact on behavioural change. In the next section, we consider key findings from Netto et al. (2008) supporting the case for adopting a strategic approach to planning interventions for minority and migrant groups.

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3. Targeting health promotion interventions for migrant or minority ethnic groups: the case for a strategic approach 3.1 Evidence that targeted health promotion initiatives can bring about positive changes Encouragingly, Netto et al. (2008) found that targeted health promotion initiatives can bring about positive changes in knowledge, health-related attitudes and behaviours, and health status, providing justification for the tailoring of such interventions. This finding also adds support to Bhopal (2006)’s argument for adapting interventions designed for the majority population. A wide range of activities have been carried out to make interventions more ‘culturally sensitive’ for minority ethnic and migrant communities in the US and Europe. 3.2 The need for inclusion of minority ethnic and migrant communities in wider initiatives While there is evidence supporting the effectiveness of interventions that are targeted at minority or migrant groups, greater understanding is needed of the varying strategies which are employed in this area and the relative contribution of these strategies in bringing about positive health-related changes. Given the time and resources needed to develop such initiatives, health promotion initiatives which target the general population should also take measures to include minority ethnic communities in such initiatives. 3.3 Unevenness in the inclusion of migrant or minority ethnic communities in targeted initiatives Within the UK, Netto et al. (2008) found that Indians and Pakistanis were the main focus of studies of adapted interventions, with a lack of studies relating to the Chinese population. In contrast, in the US, studies of health promotion interventions were much more likely to target the Chinese population rather than Indians and Pakistanis. This brings up the important issue of the selection of migrant groups for targeted interventions in these and other countries, and highlights the danger of further marginalizing certain ethnic groups either through lack of their inclusion in interventions or through lack of evaluating the effectiveness of interventions where they have been included. Given the cost of designing targeted interventions, the immediate implication of the uneven distribution of evaluative studies of adapted interventions across ethnic groups in the countries studied is the importance of sharing information about ‘what works’ in designing effective health promotion interventions for minority ethnic and migrant groups. More strategically, in the longer term, this indicates that the planning of targeted initiatives should consider the ethnic composition of the population and ensure the proportionate representation of minority ethnic or migrant groups in such initiatives.

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3.4 The need for continued theory building in developing effective health promotion interventions Netto et al. (2008) found some evidence from evaluative studies of interventions which have been targeted at minority ethnic groups that theories which predict attitudinal and behaviour change in the general population, for instance, in the area of physical activity, are relevant to such groups. However, the number of interventions underpinned by theory was low, and even where studies were reported to be theoretically driven, the link between the theoretical constructs and the specific attributes of the intervention was not clear. This is a serious shortcoming since it limits the potential for generalizability offered by theory. This suggests that much more explicit reporting of how interventions have been designed and informed by theoretical constructs is needed. Further testing of the applicability of established theories, such as the stages of change model, is also required. In summary, evidence that adapted interventions can bring about positive changes in health-related knowledge, attitudes, behaviour change and status; the high cost of designing adapted interventions and the need to include minority ethnic or migrant groups in wider initiatives; the uneven distribution of targeted adaptations across ethnic groups and the under-development of theory in this area all combine to make a strong case for a strategic approach to developing health promotion interventions for minority ethnic and migrant communities. Consistent with the need for theory and theory development, in the remainder of this chapter, we offer five principles for designing health promotion interventions, illustrating this with illustrations from the studies reviewed. 4. Five principles for adapting health promotion interventions for minority ethnic or migrant communities Each of principles offered below are designed to address one or more significant aspects of migrant/minority ethnic communities that should be taken into account in order to increase the effectiveness of behavioural change interventions for these groups. Principle 1: Use community resources to increase accessibility One of the defining characteristics of migrant or minority ethnic groups is of course their minority status. This often poses a major challenge to the recruitment of participants for targeted interventions, in that such communities are often perceived to be ‘hard-to-reach’ by practitioners. In order to overcome such barriers, the first principle proposed is the use of community resources to publicise the intervention and raise awareness of its relevance to the target group. This can be undertaken in a number of ways, including by using media channels typically used by the target group, such as community newsletters or radio or television channels. Yet other

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means of publicising the intervention include the incorporation of recruitment measures in community events or festivals, where those involved in developing the intervention may be provided with the opportunity to address large numbers of people from the target community and address any specific queries or concerns. Other means of increasing accessibility to the intervention are the identification of community leaders and organisations that have established credibility and trust within the target group. However, the resource implications of including both community leaders and organisations need to be carefully considered in the planning of the intervention. Many community organisations are small, under-funded and over-stretched (Netto et al., forthcoming). Thus, at an early stage in the design of the intervention, it is necessary to explore the interests of such organisations in being involved and the financial resources that would be required for this. This is also more likely to generate ‘buy-in’ to the project, and to address any perceived or real power imbalances, particularly if links can be established between the aims of the intervention and the goals of the organisation. While such collaboration is often time-consuming, the involvement of community organisations is also likely to contribute to the implementation of the intervention through other spin-offs such as the availability of premises for participants to gather in, and bilingual facilitators. Consistent with the surface level structure of adapted interventions identified by Resnicow et al. (1999), familiarity with these venues and people is likely to contribute to the willingness of the target group to participate in the intervention. Principle 2: Identify and address barriers to access and participation in interventions The second principle takes into account the disadvantaged socio-economic status of many minority ethnic or migrant communities, due to low or no income, recent migration status and other structural factors, such as racism. This is centred on the identification of potential barriers which might hinder access to the intervention, such as transport costs and fees. Measures identified in the review to increase access to the intervention in the study included providing transport (Mathews et al., 2007) and other means of keeping the costs of participation low (Lew et al., 1999), for instance, by either providing services free of charge or only charging a nominal fee. Yet other barriers that might be faced are long and anti-social working hours, which might need to be overcome by designing interventions which can be carried out at the workplace, for instance, by maintaining contact with participants who are attempting to give up smoking, through the use of mobile phones. This is particularly important since the material, social or environmental deprivation faced by a large proportion of migrant or minority ethnic groups may pose specific challenges to adopting a healthier lifestyle, which need to be addressed. Yet other measures which can be taken to increase participation in the intervention are based on the recognition of other important variables within the target community, such as those related to gender, age or disability. For example, taking

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account of the gendered responsibility of caring for young children, Carroll et al. (2002) provided crèche facilities to enable Asian women to participate in physical activity interventions. Other interventions designed to encourage physical activity considered the very nature of the physical activity that was being offered to encourage and enable participation from the target group. For instance, Taylor-Piliae et al. (2006)’s intervention for older Chinese adults was focused on Tai Chi since it was possible for even those with chronic illness to participate. The sensitivity and responsiveness of these interventions to within group differences increased the rate of participation within the target groups concerned. Principle 3: Develop communication strategies which address language use and differential information requirements The third principle is concerned with the need to develop strategies to facilitate communication with a multi-lingual population, which might have access to diverse sources of information and information needs. Netto et al. (2008) found that a very common means of overcoming language barriers was through bilingual facilitators, who might also be viewed as community resources, and used at all stages of the intervention (planning, recruitment, implementation and evaluation). However, other strategies might also enable planners of interventions to overcome language barriers; for instance, Taylor-Piliae et al. (2006)’s choice of Tai Chi sessions as a physical activity intervention transcended the use of language as a medium of communication among older Chinese people who spoke different languages. Yet other studies illustrated that formulating effective communication strategies involved not only being alert to the use of different languages within the target population but varying levels of literacy. For instance, participants in some targeted interventions were able to speak but not read their native language (Ma et al., 2004 a; Netto et al., 2007), indicating the limitations of translated material. This was reinforced by Ma et al. (2004b)’s study which emphasised the bilateral process of communication and the need for participants to actively communicate with health promotion practitioners, raise any queries and discuss their concerns. Yet other studies of interventions recognised that individuals within the target population may have access to different sources of information; this included the use of different media channels as well as local sources of information (such as notices in shops, GP surgeries, school, community organisations, places of worship), which varied according to their place of residence. Tapping into these sources of information enabled Taket et al. (2003) to develop an effective communication strategy with diverse Muslim communities in several London boroughs in a smoking cessation intervention. In summary, the factors that need to be taken into account in developing an effective communications strategy for minority or migrant communities involve sensitivity to the use of different languages; the extent to which these languages are used in spoken and written communication; recognition of participants as active agents in the communication process and participants’ dif-

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ferential access to a range of information sources that may differ from those of the general population. Principle 4: Identify and work with cultural or religious values that either motivate or inhibit behavioural change The fourth principle is concerned with identifying and working with participants’ underlying health-related belief systems, values and attitudes, to either motivate or discourage certain forms of health-related behavior. This was especially noticeable in interventions which sought to promote smoking cessation. For instance, Ma et al. (2005) identified traditional Chinese values such as hard work, persistence and orientation towards the family to encourage Chinese American participants not only to quit smoking, but to persist in their quit attempts. In a similar vein, other interventions targeted Muslim communities during the Muslim fasting month of Ramadan, when receptivity to religious messages was perceived to be high and drew attention to the compatibility between giving up or abstaining from smoking, and religious messages which discouraged contact with tobacco (Ali et al., 2006; Taket et al., 2003). While the examples given above illustrate the use of interventions which identify health-related beliefs and values which are compatible with positive healthrelated behavior change, there is also, in some cases, a need to challenge beliefs which are not compatible with adopting healthier lifestyles. For instance, Netto et al. (2007) found that fatalistic views among certain sections of a UK-based South Asian community relating to the prevalence of coronary heart disease discouraged participants from assuming more individual responsibility and reducing potential risk factors, such as a high fat diet and lack of physical activity. Work of this nature which involves actually countering beliefs which might be linked to religious values clearly needs to be undertaken with a great deal of skill and sensitivity in order to bring about shifts in beliefs and the desired health-related behavioural changes. Gaining the involvement of religious leaders and using traditional places of worship may facilitate the implementation of the principle of working with religious values to affect shifts that are compatible with healthier lifestyles. This is an area of work which is particularly challenging given the need to identify underlying values, attitudes and beliefs, which are relevant to bringing about changes in health-related behaviour. For instance, in examining the outcomes of two walking programmes for older Chinese Americans, one which was ‘culturally modified’ and one which was not, Chiang (2005) found that both had significant impacts. One of the explanations offered was that elements of Chinese culture other than those identified might need to be incorporated in developing a culturally modified walking programme. However, equally challenging to such work is the fluid, dynamic nature of both culture and identity, and the associated difficulty of identifying relevant underlying values among participants that relate to health-related behaviour. The next principle is concerned with acknowledging this more explicitly.

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Principle 5: Accommodate degrees of ethnic/cultural affiliation in the planning and evaluation of targeted interventions As was acknowledged earlier, ethnicity as one of the primary makers of identity, is widely acknowledged to be fluid, dynamic and relational. This suggests that members of minority ethnic communities or migrant groups may have varying degrees of ethnic/cultural identification. The extent to which individuals identify with their ethnic origin may vary according to age, length of residence in the country of migration, whether belonging to first, second or third generation of migrants, and fluency in the language spoken by the majority population. Hence, it would follow that caution needs to be exercised when attempting to include cultural components that are perceived to be relevant to the target group in interventions, since the receptiveness of individuals from the group to such components is likely to vary according to the extent of his or her affiliation with his or her ethnic origin. For example, Sun et al. (1999) has suggested that Chinese American youth who held both traditional Chinese and mainstream American values need longer exposure to positive health measures than the time allowed in an intervention designed to encourage participants to adopt healthier diets. Similarly, Chiang (2005) has also suggested that the significant impacts of both culturally modified and non-culturally modified walking programmes for Chinese American participants discussed above may be due to their acculturation with the majority population. In the next section, we consider the implications of a strategic approach for including migrant or minority ethnic groups in health promotion interventions and the five principles offered for health promotion policy, practice and research. 5. Implications for health promotion policy, practice and research The small number of adapted interventions on promoting healthy diets, physical activity, smoking cessation and reducing the risk of coronary heart disease and cancer among Pakistanis, Chinese and Indians in the US, UK and other parts of Europe indicates that important preventative actions against major causes of mortality and morbidity have not been taken. As has been argued above, this presents a compelling case for more strategic consideration of the extent to which these groups are either routinely involved in health promotion activity for the population at large, as well as targeted through adapted interventions. It also suggests that to date, health promotion policy in these countries has not been adequately informed by scholarship in, and experience of carrying out rigorously evaluated interventions with minority ethnic communities which can actively promote healthy lifestyles and reduce the burden of disease to individuals, communities, health service providers and the state. Unless measures are actively taken to address this, the lack of informed policy on these matters is set to continue, with increasingly serious implications given the trend towards increasing ethnic diversity and globalisation. It is also worrying that

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studies in Europe appear to have been carried out in isolation from those in the US and vice versa, indicating lost opportunities to build on lessons learnt in different geographical contexts, and with different ethnic groups. More positively, the finding that there is considerable scope for adapting interventions along a number of dimensions, and further, that there are commonalities in the way that interventions have been designed for minority ethnic or migrant groups as captured in the five principles offered provides a significant advance in scholarship in this area. The commonalities identified point to an underlying rationale for adapting interventions that is shared across geographical space, regardless of the very different contexts in which the interventions have been carried out, and the apparent lack of communication between researchers and health promoters working on both sides of the Atlantic. This suggests that there are common factors relating to minority ethnic and migrant communities which transcend the specificities of their ethnic origin and other aspects of their lived experiences. Considered attention to each of these dimensions is likely to prove invaluable at all stages of planning, designing, implementing and evaluating targeted interventions. The five principles offered above indicate that in-depth knowledge of communities is needed in order to develop interventions that can effectively engage participants from minority ethnic communities. Further, the principles strongly suggest that such engagement is facilitated by the involvement of members of the target community, either in the form of organisations, volunteers, health promoters or bilingual health or community workers. This suggests that there is a need for capacity building both within and outwith these communities, with minority ethnic voluntary (also known as ‘not-for-profit’ or non-governmental) organisations playing an important role in this, given their in-depth knowledge and experience of working with these communities (Netto et al., forthcoming). As Netto et al. (forthcoming) argues, more recognition needs to be given to these organisations’ ‘invisible’ forms of capacity, such as its strong networks, by government and other public services, in order to ensure effective intersectoral partnership working arrangements. The need for greater intersectoral working in health promotion activity has also been emphasised by WHO (2009), along with the need to address possible power imbalances and ensure greater accountability and transparency at all levels of governance. In order to advance our understanding of the effectiveness of health promotion interventions for minority ethnic and migrant communities, there is a need to develop more robust qualitative and quantitative research. High quality qualitative research should seek to illuminate the complex factors which influence healthrelated knowledge, behaviour and attitudes, and the factors which either support or inhibit changes which are consistent with the promotion of healthier lifestyles. Such understanding would also contribute towards the development and design of more informed quantitative evaluations of health promotion interventions in the key areas of coronary heart disease, cancer, physical activity, diet and smoking cessation In terms of quantitative evaluations, there is scope for more large-scale, quasi-

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experimental studies and other pre- and post-intervention studies. Longitudinal studies which allow for follow-up measures to be taken over a longer periods of time would contribute to more robust analysis of the effectiveness of interventions and the extent to which they can be sustained over time. More studies on the costeffectiveness of these interventions is also needed to assist in the allocation of resources. In order to appraise the differential impact of interventions across ethnic groups, it is also important to more clearly define these groups and collect ethnically disaggregated data, as well as data relating to key variables such as gender and socio-economic class. Finally, it is worth mentioning that a forthcoming study (Liu et al.,in press), which also includes the evaluation of interventions for African and African-Carribbean groups has built on the outcomes of the current study, found additional support for the five principles offered and developed a typology of adaptations. Additionally, this study has developed an eight stage Programme theory of Adapted interventions which maps the adaptations onto different stages of the cycle and a decision-making tool, RESET (i.e. Relevancy, Evidence base, Stages of intervention, Ethnicity and Trends), to support future studies in this area. References Aboud, F. (2009). Editorial. Virtual Special Issue: Health Behaviour Change. Social Science and Medicine. http://www.elsevier.com/wps/find/S06_351.cws_home/SSM_ vi_hbc Ali, H.,Viswanathan, P.K. & Rizvi, A. (2006). BHF Healthy Ramadan: Project evaluation. London: British Health Foundation. Barth, F. (1969). Ethnic groups and boundaries: the social organisation of culture difference. London: Allen and Unwin. Bhopal, R.S. (2006). The public health agenda and minority ethnic health: a reflection on priorities. Journal of the Royal Society of Medicine, 99, 58 -61. Carroll, R., Ali, N., Azam, N. (2002). Promoting physical activity in South Asian Muslim women through ‘exercise on prescription’. Health Technology Assessment, 6(8). Chiang C. (2005). The effects of a walking program on older Chinese American immigrants with hypertension’ PhD University of Massachusetts Amherst, USA. Davey Smith, G., Chaturvedi, N., Harding, S., Nazroo, J. & Williams, R. (2000). Ethnic inequalities in health: a review of UK epidemiological evidence. Critical Public Health 10(4), 377-408. Greenhalgh, T., Helman, C. & Chowdury, A.M. (1998). Health beliefs and folk models of diabetes in British Bangladeshis: a qualitative study. British Medical Journal, 316, 978-83. Kelly, M. (2005). The challenge of changing patient behaviour. In: Patel, K.C. & Shah, A. (Eds.) Prevention, treatment and rehabilitation of cardiovascular disease in South Asians 1st edition. Birmingham, UK: South Asian Foundation.

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Lew, R., Chau, J., Woo, J.M., Nguyen, K.D., Okahara, L., Min, K.J. et al. (1999). Annual walkathons as a community education strategy for the Asian American/Pacific Islander populations in Alameda County, California. Journal of Health Education, 30(2), Suppl-30. Lewin, B., Robertson, I.H., Cay, E.L., Irving, J.B. & Campbell, M. (1992). Effects of selfhelp post-myocardial-infarction rehabilitation on psychological adjustment and use of health services. Lancet, 339, 1036 – 40. Liu, J.J., Davidson E., Bhopal, R.S., White M., Johnson M.R.D., Netto G., et al. (in press). Adapting health promotion interventions to meet the needs of ethnic minority groups: mixed methods evidence synthesis. Health Technology Assessment. Ma, G.X., Lan, Y., Edwards, R.L., Shive, S.E. & Chau, T. (2004a). Evaluation of a Culturally Tailored Smoking Prevention Program for Asian American Youth. Journal of Alcohol and Drug Education, 48(3), 17-38. Ma, G.X., Shive, S.E., Tan, Y., Thomas, P. & Man, V.L. (2004b). Development of a culturally appropriate smoking cessation program for Chinese-American youth. Journal of Adolescent Health, 35(3), 206 -216. Ma, G.X., Fang, C., Shive, S.E., Su, X., Toubbeh, J.I., Miller, S. et al. (2005). A culturally enhanced smoking cessation study among Chinese and Korean smokers. International Electronic Journal of Health Education, 8, 1-10. http://www.iejhe.org Mathews, G., Alexander, J., Rahemtulla, T. & Bhopal, R. (2007). Impact of a cardiovascular risk control project for South Asians (Khush Dil) on motivation, behaviour, obesity, blood pressure and lipids. Journal of Public Health, 29(4), 388-397. McAllister G. & Farquhar M. (1992). Health beliefs: a cultural division? Journal of Advanced Nursing,17, 1447-54. Netto, G., McCloughan, L. & Bhatnagar, A. (2007). Effective heart disease prevention: Lessons from a qualitative study of user perspective in Bangladeshi, Indian and Pakistani communities. Public Health, 121, 177-186. Netto, G., Bhopal, R., Lederle, N., Khatoon, J. & Jackson, A. (2008) Health promotion and prevention interventions in Pakistan, Chinese and Indian communities related to CVD and cancer. Edinburgh: NHS Health Scotland. http://www.healthscotland. com/documents/3102.aspx Netto, G., Bhopal, R., Lederle, N., Khatoon, J. & Jackson, A. (2010) How can health promotion interventions be adapted for minority ethnic communities? Five principles for guiding the development of behavioural interventions. Health Promotion International, 25(2), 248-257. Netto, G., Kamenou, N., Venugopal, S., Asghar, R. (in press) Capacity building in the minority ethnic voluntary sector: for whom, how and for what purpose? Policy and Politics. Pasick, R., Onofrio, C. & Otero-Sabogal, R. (1996) Similarities and differences across cultures: questions to inform a third generation for health promotion research. Health Education Quarterly, 23, 142-1161.

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Platt, L. (2007) Poverty and ethnicity in the UK. Bristol: Joseph Rowntree Foundation. Resnicow, K., Baranowski, T., Ahluwalia, J.S. & Braithwaite, R. (1999) Cultural sensitivity in public health: defined and demystified. Ethnicity & Disease, 9, 10-21. Sun, W.Y., Sangweni, B., Chen, J., Cheung, S. (1999) Effects of a community-based nutrition education program on the dietary behavior of Chinese-American college students. Health Promotion International, 14(3), 214-249. Taket, A., Kotecha, M. & Belling, R. (2003) Evaluation of London-wide Ramadan campaign. London: South Bank University. Taylor-Piliae, R.E., Haskell, W.L., Stotts, N.A., Froelicher, E.S. (2006) Improvement in balance, strength, and flexibility after 12 weeks of Tai Chi exercise in ethnic Chinese adults with cardiovascular disease risk factors. Alternative Therapies in Health and Medicine, 12(2), 50-58. WHO (2009) Milestones in health promotion: statements from global conferences. Geneva: World Health Organisation.

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Chapter 18

Adaptation of health promotion interventions for ethnic minorities: a mixed methods review

Jing Jing Liu, Emma Davidson, Raj Bhopal, Martin White, Mark Johnson, Gina Netto & Aziz Sheikh

1. Introduction Increasing ethnic diversity and the persistence of health inequalities in Europe and North America are challenging health systems to deliver effective, equitable and evidence-based health promotion interventions. Adapting interventions of proven effectiveness in the general population for use in ethnic minority groups is of increasing research, clinical and policy interest, but the effectiveness of such approaches is as yet poorly understood. In the context of promoting smoking cessation, physical activity and healthy eating in African-, Chinese- and South Asian-origin populations, we sought to identify which adapted health promotion interventions work for whom in what contexts and are ready for implementation into routine models of care. We also sought to establish which require further developmental work. We modified the key steps of realist evaluation, as outlined by Pawson and colleagues (2005), to synthesise data generated from our recent, phased, multi-method investigation on the adaptation of health promotion interventions for ethnic minority groups (Liu et al., in press). Synthesis of these data was achieved through creation of ‘context-mechanism-outcome’ (CMO) configurations to examine what factors and settings (context) moderated interventions and adaptations (mechanism) and their successes and shortcomings (outcomes) for diverse ethnic minority populations. We were able to identify contexts that either enhanced or diminished the effectiveness of adaptations at each stage of an intervention. There was no clear evidence

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that any adapted intervention approach is ready for rollout. Areas of promising practice, which require more research, include the use of a broad range of providers and adapting materials to support the use of pharmacotherapies for smoking cessation. Other areas include creating greater opportunities for incorporating exercise and active lifestyles into everyday life through interventions that alter the built inner-city environments in which many ethnic minority populations live. This may involve more easily accessible (by walking) amenities and safe locations for individuals, families and communities to increase physical activity. Interventions should also test changing the availability of foods served at community organisations and religious institutions, and incorporating spiritual themes or interactive formats into healthy eating interventions. The appropriate adaptation of health promotion interventions is a complex undertaking with an – as yet – inadequate evidence base. The limits of how the mechanisms of interventions and adaptations work are revealed when we pay attention to the breadth of contextual factors at play. By making the best use of the evidence on effective interventions for the general population, combined with knowledge of possible adaptations and consideration of the moderating contextual factors, we were able to highlight promising practices and suggest areas for further research. Readers should note that this chapter reports on a wide-ranging review study involving large numbers of references. Because of space limitations it is not possible to include more than a selection of the references here. Those who wish to obtain the full list can do so by e-mailing the address given at the end of this chapter. 2. Background There is considerable evidence demonstrating that some ethnic minority groups in Europe (Acheson, 1998; Johnson, 2006; Bhopal, 2009) and North America (US DoH, 2000; CDC, 2011) experience disproportionate levels of morbidity and mortality when compared to a White European-origin population. The burden of chronic diseases, such as diabetes (Tran et al., 2011; Agyemang et al., 2011) and cardiovascular disease (Agyemang et al., 2009; Bhopal et al., 2011), is differently distributed in these ethnic populations. Chronic disease aetiology is complex and is in many cases influenced by the interplay between genetics and environmental factors. Racism and discrimination, for example, and access to quality health services, are further contributors to poor health. Environmental factors include behavioural, social, cultural, economic and historical conditions (Wild et al., 2007; Jones et al., 2009), of which behavioural factors (i.e. smoking, diet and exercise) are potentially amenable to change (WHO, 2005). Smoking, poor diet and physical inactivity are the underlying risk factors for many chronic diseases, and health promotion approaches are increasingly seen as the most promising long-term strategies to prove effective and cost-effective for

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preventing disease, improving outcomes in those with established disease, and reducing inequalities in health. Many of these strategies also recognise the contribution of chronic disease to inequalities in health and therefore provide additional incentive for a preventive health approach (ECDA, 2010; White et al.,1998; Aspinall, 2006). 3. Adapting health promotion interventions to address health inequities Health promotion interventions are generally conceptualised in such a way that they appeal to, and are applicable to, the population at large. In recent decades, evidence has suggested that these interventions may not have the desired universal reach across all sectors of the population. Ethnic minority populations, in many circumstances, are inadequately served by health promotion efforts, transforming inequality to inequity – health outcomes that are thus not only unequal, but also unjust (Bhopal, 2009). These health inequities challenge health systems in the many countries that are now experiencing substantial ethnic diversity in their population. Therefore, health promotion interventions need to take account of this ethnic diversity (Davidson et al., 2010), along with intersecting variables such as age, gender, socioeconomic status and disability. Where an individual or group find themselves in relation to these social determinants can increase their susceptibility or enhance their resiliency to these modifiable risk factors. Health promotion, like other areas in healthcare, is increasingly expected to be underpinned and informed by evidence-based practices (Tang et al., 2003; Juneau et al., 2011). Evidence – such as guidelines and systematic reviews of health technologies, pharmaceutical products and medical procedures – influences policy and funding decisions. From these sources of evidence it is possible to identify the interventions, approaches and strategies found to be effective in the general population, which may also, if appropriately adapted, prove effective in ethnic minority populations (Bhopal, 1991). This chapter brings together the findings from different phases (Box 1) of our recently completed multi-method study (Liu et al., in press) aiming to better understand how interventions can be effectively and efficiently adapted. 4. Searching for multiple perspectives to inform adaptation Realist synthesis philosophy and methods (Pawson & Tilley, 1997) were considered appropriate to develop a rich, multi-perspective, contextualised interpretation and synthesis of our mixed-methods data. Realist approaches have previously been used in health research as a method for systematically reviewing primary studies (often in the context of studying complex interventions). These reviews have synthesised

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Box 1: Summary of three main phases in our multi-method study – We summarised recommendations from UK guidelines and international systematic reviews to get a sense of what works for promoting smoking cessation, physical activity and healthy eating in the general population. – We undertook a systematic review of adapted interventions for African-, Chinese- and South Asian-origin populations to understand what works for whom. – We conducted qualitative interviews with researchers and health promoters working with these populations to uncover what works, for whom and in what circumstances.

large and disparate bodies of evidence on, for example, Internet-based medical education (Wong et al., 2010), and provided a parallel analysis to a Cochrane review on the efficacy of school feeding programmes (Greenhalgh et al., 2007). These reviews accommodated and often sought out heterogeneous studies (in design, population and topic, for example) for analysis. By searching for underlying theories in interventions and focusing on explaining the ‘demi-regularities’ or patterns observed in the body of evidence, it was often possible to generate important new insights into underlying explanatory mechanisms (Sheppard et al., 2009). Articulating how interventions are thought to work, and how they actually work, can thus help in building an evidence base that is sensitive to contextual considerations, and therefore more likely to approximate ‘real-life’ circumstances and generate practical and applicable conclusions for research, practice and policy (Rychetnik et al., 2002). Therefore, in this chapter, we seek to answer two key questions: – Which adapted interventions work for whom in what contexts? – Which interventions should be prioritised for future research? 5. Methods A realist approach to data is not a review technique, but a review logic (Pawson et al., 2005; Pawson, 2006), meaning that it is driven by an underlying framework rather than set procedures. Each review will therefore require its own specific methods. We modified the key steps as outlined by Pawson and colleagues (2005), originally developed for the synthesis of primary studies, to synthesise data generated from multiple method sources (Box 2).

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Box 2: Framework for realist synthesis – modified from the key steps from Pawson et al., 2005 1. Refine the purpose of the review and articulate key theories to be explored To answer the question “does the adapted intervention work and which adaptations work particularly well for which populations, in what settings?” we developed two key theories/frameworks: the 46-item typology of adaptations, and a stage-based programme theory for adaptation. 2. Search for relevant evidence Data extraction and analysis relating to the different methods are discussed in full in the final report (Liu et al, in press); a summary is offered here. Two reviewers (JJL and ED) independently identified, selected, extracted and analysed the data for each phase of work. In addition to the usual information collected, such as population, study type and outcome measures, we recorded any significant insights reported by researchers on why they thought their intervention was successful or not. For the realist synthesis, we drew on recommendations from 15 UK guidelines and 111 international systematic reviews of relevant health promotion interventions for the general population; findings from 107 studies of adapted interventions for the three exemplar ethnic groups of interest; and insights from 26 qualitative interviews. With progressive focusing, we used the data to further develop our programme theory, test the applicability of the adaptation, and capture nuanced understandings. 3. Appraise the quality of the evidence and extract the data The quality of the studies was assessed on ‘fit for purpose’, that is whether they were relevant to the programme theory being tested. This realist approach also allowed us to draw on some of the studies ‘excluded’ from our systematic review which were, in some instances, useful for providing complementary insights. 4. Synthesise the evidence Drawing on the diverse data, we actively constructed ‘context-mechanismoutcome’ (CMO) configurations in tables (for example, see Table 1) to examine what factors and settings (context) moderated interventions and adaptations (mechanism) and their successes and shortcomings (outcomes) for diverse ethnic minority populations. A complete list of these CMO configurations is available from the authors (Liu et al., in press).

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Following these steps, we searched for patterns to highlight explanatory mechanisms (Sheppard et al., 2009) to articulate how interventions are thought to work and how they actually work. Uncovering convergences and divergences in theory and practice can help model how and why programmes work, and guide implementation. Figure 1 illustrates how data from the different research methods contributed to building CMO configurations. Figure 1: Mapping the data generated from the different research methods to a realist context-mechanism-outcome (CMO) configuration Study methods

CMO configuration

National guidelines and international systematic reviews

Mechanism : Interventions and adaptations

Systematic review of adapted interventions for African-, South Asian- and Chinese origin populations

Context: Moderates effects of interventions and adaptations

Qualitative interviews with researchers and health promoters

Outcomes : whether the intervention or adaptation was effective or not

Realist synthesis

6. Results 6.1 Findings from three main study phases Findings from the three main phases are summarised in Box 3. Making sense of this large and somewhat heterogeneous body of evidence was challenging. This complexity is illustrated, for example, by the range of permutations that can arise through combining the recommended health promotion interventions identified in the summary of evidence from guidelines and systematic reviews, with the 46 adaptations identified from our own systematic review. This combination generates multiple adaptation possibilities for different populations and health topics. These

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combinations are further complicated by the conceptual and practical considerations identified from the interview data. Considering this complexity there were, perhaps unsurprisingly, clearly many different answers to the question of whether adaptations are effective or not. The challenge was thus to recognise and encompass these intricacies, but still be able to generate meaningful insights, which could contribute to prioritising future research on adapted interventions for ethnic minority populations. Box 3: Summary of findings from the three main phases in our multimethod study – Guidelines and systematic reviews: featured drug-based interventions for promoting smoking cessation and the use of specific places with ‘captive’ audiences, such as schools, homes, and community centres for diet and exercise, with modest short-term improvements. Few specific recommendations for ethnic minority groups. – \ Systematic review of adapted interventions: few studies directly compared the effectiveness of adapted with unadapted interventions, therefore, little clear evidence of whether or not adapted interventions were likely to be more effective or cost-effective than standard interventions. From the larger body of adapted interventions without any comparable conditions, we identified 46 types of adaptation that were used across the varied studies. – Qualitative interviews: three key themes emphasised the importance of broadening thinking on ethnicity to understand situational contingencies and experiences; reinforced the use of relevant adaptations; and helped to contextualise the practicalities of adapting health promoting interventions.

6.2 Findings from a realist perspective The use of a realist lens helped us to identify common approaches or mechanisms that may be effective for certain populations, and for particular health issues, as well as the mediating or moderating factors that could potentially alter the outcome. The CMO configurations are presented here in a narrative format to illustrate the patterns identified for some of the adaptation mechanisms. These adaptations were identified throughout the intervention process, from initial planning to final dissemination of findings, and are organised and presented below according to six typical stages of an adapted intervention:

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– – – – – –

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conception, design and planning promotion, engagement and recruitment implementation and delivery retention evaluation and outcomes dissemination.

Each stage is described below, highlighting some of the realist insights derived from a synthesis of evidence generated from diverse methods. As evidence emerges, we will be better placed to further test and, if necessary, refine these CMO configurations. A full list of the identified CMO configurations can be obtained from the authors (Liu et al., in press), while an example of a CMO configuration for the ‘promotion, engagement and recruitment’ stage is provided in Table 1. Table 1. CMO configuration for programme theory stages promotion, engagement and recruitment Adaptation (Mechanism)

Context + Outcome (Systematic review)

Context + Outcome (Qualitative interviews)

Located in ethnically/ culturally appropriate/ familiar location

Recruitment of African Americans to a smoking cessation intervention was more successful in churches (81%) and health care settings (78%), than housing developments (59%), as measured by number of participants willing to provide a phone number, which suggests in housing developments, more interpersonal contacts are needed to get people to disclose their phone numbers in low-income settings (Resnciow, et al., 1997a; 1997b).

“Em the second study with the [?wig?] programme, the participants were supposed to be there for healthy eating education but we, after we got into the study we found that the nutritionists were basically depending on the pamphlet and sending them off with their food vouchers (right), so to spend a half an hour doing a DVD was actually a lot more time than they were expecting. So that helped, you know hurt us in terms of recruitment because some, a lot of people didn’t wanna wait and do it” (P22, healthy eating, US)

A community-based group Tai Chi exercise programme for a Chinese population was popular due to the recruitment site, which was in the local community and linked in with other activities popular with women such as playing mah-jong and buy vegetables (Taylor-Piliae, et al. 2006a; 2006b).

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6.2.1 What adaptations work for whom and in what contexts at the six stages of an adapted intervention? Conception, design and planning Adaptations during (e.g.) exploratory phases with target populations and community leaders indicated that intervention study designs involving cluster randomisation are often challenging for community-based interventions in ethnic minority populations. In church settings, in particular, participants have repeatedly noted the unacceptability of randomisation to a comparison condition with seemingly low benefits. A comparison condition could be perceived as divisive within communities where the maintenance of a collective presence and voice is felt to be important. When randomisation was perceived to be an absolute necessity by the researchers, a comparison condition of near equivalent benefit was often negotiated. Similarly, not undertaking any adaptation of the control intervention was sometimes considered unacceptable and so, at times, the control group would also receive some degree of adaptation, thereby diluting comparisons. This accommodation sometimes limited the opportunity to make meaningful inferences about the impact of the adapted intervention when compared to the standard approach. An exploratory phase with community leaders to increase effectiveness was an often-cited adaptation; however, it was also suggested that speaking to community members was equally important, as they are ultimately the participants in interventions and were more often than not only loosely affiliated with the ‘leaders’. These community discussions also revealed that some communities have been inundated with research activities, so that interventions may be in competition with other study invitations. This current concentration of interest could reflect years of being exploited, neglected, or both. Promotion, engagement and recruitment Interventions were promoted through different channels, and many adaptations were used to raise awareness and engage the population. Associations between the approach to promotion (methods used) and eligibility were observed. For example, African Americans who learned about a physical activity and healthy eating intervention through family and friends were less likely to be eligible than those who responded to email or promotional material. Similarly, recruitment via personal contact for a smoking cessation intervention for an African American population attracted people who were interested and said they would participate, but then tended to not show up or dropped out. Recruitment may also depend on the recruitment site chosen; for example, churches (81%) and healthcare settings (78%) were found to be more successful than housing developments (59%) in a smoking cessation intervention for an African American population, as measured by the number of people who provided their phone number. The authors suggested that in low-income housing developments, more interpersonal contacts are needed to boost recruitment. A community-based

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group Tai Chi exercise programme for a Chinese population was popular due to the recruitment site, which was in the local community and linked in with other activities such as playing mah-jong and buying vegetables. However, even when the recruitment took place in an appropriate location, uptake may still be hindered if the recruitment process was perceived to be too time consuming. Implementation and delivery There were many examples of how context moderated the effectiveness of adaptations at the implementation stage. Appropriate timing and location of the intervention included, for example, avoiding the delivery of interventions during significant holidays as this was when people were likely to be travelling or participating in religious observance and therefore unable to participate fully in an intervention. Delivering an intervention in an appropriate location, such as community centres and churches, were generally viewed as positive adaptations. Although these sites may have positive effects on intervention reach and sustainability, they may not be effectively used if they are only used as sites (especially churches). Moreover, while community centres may be convenient, the space itself may disrupt the continuity of the programme if consistent room and space availability is not possible. Sometimes the location for an intervention may be preferred because it was felt to be more ‘culturally safe’; for example, a group of South Asian-origin women ‘preferred’ to exercise in a poorly lit school field in the evenings rather than walking along the sidewalk during the day. However, this ‘preference’ was based on their perception that they would attract derogatory comments if they were visible during the day. Delivering interventions in culturally appropriate or preferred formats, such as group-oriented ones, was encouraged and found to be successful, for example, in a group-based intervention for a walking programme for Pakistani women. Groupbased interventions however may not be appropriate for every health issue under study for ethnic minority populations. In some cases, encouraging group-based programmes may be inappropriate: for example, it was observed that men in the Chinese community wanted “the opportunity to give up [smoking] outside of the family environment so that when he went back in he had actually managed to succeed and was smoke free and it could be celebrated, but if he relapsed he didn’t wanna lose face”. Similarly, social support in the form of group sessions and discussions was not always desirable as participants wished to keep private their diabetes status, which conflicted with openness of the intervention formats. Such tensions for example arose in the context of a diabetes education intervention for a South Asian population, a diabetes management intervention for African Americans, and a churchbased smoking cessation intervention for African Americans. Retention Addressing structural barriers (e.g. access to transport) and financial constraints was identified as an important adaptation. Provision of transport can address

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physical and financial barriers to participation. This was observed to be salient for younger people who have limited access to different modes of transport to reach intervention sites. When transport was provided after school, 70% attended an average of at least two days per week. In another area where transportation was not provided, only 33% reached this level of attendance. Telephone follow-up strategies appeared to be effective: for example, a toll-free telephone number was successfully used in a church-based physical activity and healthy eating intervention for an African American population. On the other hand, when telephone numbers were difficult to obtain, low implementation of booster calls (31%) to African American participants in a smoking cessation intervention was observed. In another smoking cessation intervention for African Americans involving genetic biomarker feedback plus telephone and nicotine replacement therapy (NRT), 21% of participants were lost at follow-up and the primary reason cited was that participants no longer had telephone access. Therefore, telephoneassisted strategies appeared to be successful for follow-up when there was consistent access to a telephone, otherwise it was observed to hinder retention. Evaluation and outcomes Adaptation mechanisms for this stage suggest that participants’ life circumstances, socioeconomic positions and goals should be taken into consideration when undertaking programme evaluation of adapted interventions. For example, smoking behaviour was viewed positively in the light of other life stressors, and intervention strategies, such as motivational interviewing, were perceived by participants only to articulate barriers rather than to reduce them or help with overcoming them. In a group-based behavioural weight loss programme for African Americans, the addition of motivational interviewing did not increase attendance, change dietary intake or physical activity, or result in weight loss, when compared to women who received health education. Participants’ reasons for engagement in interventions can also differ from those established by the interventionists, and these outcomes need to be acknowledged. For example, African American women enrolled in a healthy eating intervention to earn qualifications to work in the food industry rather than to improve their own eating practices. Goals for weight loss and body size, particularly among African American women and girls, differed from the interventionists’ goals and perceptions of success. Women in the study were satisfied with their 3% weight loss, even though this was well short of the 7% weight loss goal set by the investigators and considered to be clinically significant by the National Heart, Lung and Blood Institute in the US. Similarly, weight maintenance over a period of feasting was perceived to be an acceptable outcome for a group of Muslim women engaged in a healthy eating intervention.

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Dissemination Few adaptation mechanisms were proposed for the dissemination stage; however, user engagement discussions suggested that greater linkages were required between people working in ethnic minority health to better facilitate the exchange of research findings. This concern was best articulated by one of our interview participants: Why keep reinventing what’s been done out there cause it, I mean we piloted this and I mean it’s a bit of blood sweat and tears when you’re piloting something and then you want to put those learnings into practice and you know it is a lot of work and if you’ve got something that could be adapted for use within your community then why not. 7. Interventions which should be prioritised for future research Based on our work, we found no clear evidence of how best to impact on these lifestyle factors in relation to our target populations. We found that there are no adapted interventions that are as of yet ready for implementation; however, we found a number of important and promising areas in need of further research: these are considered below. Interventions were considered candidates for research if they had evidence of effect in the general population, but had not been identified as having been trialled in an adapted form for our populations of interest; in addition, interventions which we did identify as adapted in our review and had demonstrated evidence of effect from ‘strong’ quality studies were considered suitable for pursuing with further study. Smoking The use of a broad range of providers such as dentists, psychologists, pharmacists and midwives was recommended for the general population; however, this breadth of providers was not evident in the adapted studies. This finding may in part be due to the increased use of community-based lay workers or peer educators as the providers of health promotion for ethnic minority populations. There is probably greater scope for adaptation and collaboration with these providers, particularly as it was suggested that there may be a preference for health-professional delivered services in addition to, or instead of, peer- or lay-delivered interventions. While pharmacotherapies are widely recommended for general population smokers, there were only two adapted smoking cessation interventions which were strong in quality and had effective outcomes (excluding outcomes related to knowledge, beliefs and attitudes, and outcomes which were not sustained). One of these interventions utilised bupropion as an adjunct to a culturally adapted intervention involving motivational counselling and the Pathways to Freedom culturally sen-

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sitive smoking cessation guide; the other was a provider prompting intervention (Ask-Advise-Assist-Arrange Follow-up model) with tailored print materials/birthday cards providing stage-based behavioural messages. Both interventions were conducted with African American populations, and the specific cultural adaptations would differ when used with other populations. Pharmacotherapy interventions have low scope for adaptation in terms of the product itself, but greater scope for adaptation in terms of implementation, as they are individually oriented and its delivery and materials readily modifiable. Physical activity Workplace or organisational policies, which were recommended for general populations, were absent from interventions adapted for ethnic minority populations. However in the excluded literature there were workplace policy ‘strategies and activities’ implemented for multi-ethnic workforces (the reason these were excluded was that they did not report the ethnic composition of the workforce, or the majority ethnic group was not either African-, Chinese- or South Asian-origin). Workplace interventions were found to increase physical activity as well as productivity and therefore implementation could be acceptable for employees, if feasible for employers, as a strategy to increase physical activity for a larger population. Although no adapted interventions identified in our systematic review implemented environmental strategies to increase physical activity, a recommendation was made for a general population. Evidence of walking/cycling route use by ethnic minorities was, however, reported from the interviews, as well as short bouts of group activities in public places. This would be one way to facilitate a potential preference for physical activities in social settings. Furthermore, walking generally appeared to be an activity supported by other researchers conducting physical activity interventions, particularly when informal walking circuits were created within participants’ own neighbourhood. Although there may be little scope for adapting the built environment, there may be opportunities for modifying how that built environment is used and the social activities that can take place within it. Healthy eating Overall there was a good degree of coherence between recommended strategies and activities for the general population, and those that have been adapted for ethnic minority populations. Only two had not been tested in an adapted form: food subsidisation and workplace point-of-purchase. Both activities have low scope for adaptation unless there are ethnic-specific or exclusive workplaces willing to take up such strategies; there may be difficulties in engaging with these sites, as discussed above for smoking cessation. Furthermore, there were few recommendations on the techniques that may work for a general population. Looking to the adapted studies literature suggests that interventions which drew on spiritual themes or were faith-based (and not

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necessarily held at a religious site) and cooking clubs constituted interactive activities that were acceptable and feasible for at least some sub-sections of these ethnic minority populations. These may in turn also prove to be promising for the general population and therefore require further research and testing. 8. Conclusion These examples describing the various CMO configurations are illustrative rather than exhaustive, and represent the complexity of adapting health promotion interventions for ethnic minority populations. The limits of how the mechanisms of interventions and adaptations work are revealed when we pay attention to the breadth of contextual factors at play. Despite the fact that it seems a challenging task to develop evidence-based practice for delivering effective smoking cessation, physical activity and healthy eating interventions for African-, Chinese- and South Asian-origin populations, we were able – by using a realist lens and making the best use of the evidence on effective interventions for the general population, combined with knowledge of possible adaptations and considering the moderating contextual factors – to identify practices that, with additional investigation, could prove promising to improving the health of ethnic minority populations. Further methodological guidance on how to utilise realist synthesis to review evidence has recently been proposed and is under development by Greenhalgh and colleagues (2011). Our synthesis of data from different sources supports the identification and compilation of adaptations which can increase the appropriateness of interventions for ethnic minority populations. This process, however, represents the startingpoint; how these interventions and programmes will work in practice depends on an understanding of the complexity of behaviour change and the diversity within populations. The crux of this piece is to highlight both aspects, and although our analysis drew on some, but not all of the studies included in each phase of work, it illustrates that using a realist lens, we can work with the evidence we have to develop a more coherent story of complexity and diversity. Acknowledgement This project was funded by a grant from the Medical Research Council (MRC) (07/63/03) on the adaptation of health promotion interventions to better meet the needs of minority ethnic groups; additional funding to support dissemination was received from NHSHealth Scotland.

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References This list contains a selection of relevant references. Please contact Prof. Aziz Sheikh at the following e-mail address for a full list: [email protected] Acheson, D. (1998). Independent enquiry into inequalities in health: Report of the Scientific Advisory Group. London: Her Majesty’s Stationary Office. Agyemang, C., Addo, J., Bhopal, R., Aikins, A.D.G. & Stronks, K. (2009). Cardiovascular disease, diabetes and established risk factors among populations of sub-Saharan African descent in Europe: a literature review. Globalization and Health, 5(7), doi:10.1186/1744-8603-5-7. Agyemang, C., Kunst, A.E., Bhopal, R., Anujuo, K., Zaniotto, P, Nazroo J. et al. (2011). Diabetes Prevalence in Populations of South Asian Indian and African Origins A Comparison of England and The Netherlands. Epidemiology, 22, 563-567. Aspinall, P. (2006). Enhancing the Health Promotion Evidence Base on Minority Ethnic Groups, Asylum Seekers/Refugees and Gypsy Travellers. Cardiff: Health ASERT Programme Wales, Welsh assembly government. Bhopal, R. (1991). Health Education and Ethnic Minorities. British Medical Journal, June, 302(6788), 1338. Bhopal, R. (2009). Chronic diseases in Europe’s migrant and ethnic minorities: challenges, solutions and a vision. European Journal of Public Health, 19(2), 140-143. Bhopal, R., Rafnsson S.B., Agyemang C., Fagot-Campagna, A., Giampaoli, S., Hammar, N. et al. (2011). Mortality from circulatory diseases by specific country of birth across six European countries: test of concept. European Journal of Public Health, doi: 10.1093/eurpub/ckr062. CDC (2011). Health Disparities and Inequalities Report – United States. Atlanta, GA: Centers for disease control and prevention. http://www.cdc.gov/mmwr/pdf/other/ su6001.pdf Davidson, E., Liu J.J. & Sheikh A. (2010). The impact of ethnicity on asthma care. Primary Care Respiratory Journal, 19(3), 202-208. ECDA (2010). A unified prevention approach: the case for urgent political action to reduce the social and economic burden of chronic disease through prevention. Sophia Antipolis: European Chronic Disease Alliance. http://www.idf.org/webdata/docs/ idf-europe/Chronic-disease-alliance-Final.pdf Greenhalgh, T., Kristjansson, E. & Robinson, V. (2007). Realist review to understand the efficacy of school feeding programmes. British Medical Journal, 335, 858-861. Greenhalgh, T., Wong, G., Westhorp, G. & Pawson, R. (2011). Protocol – realist and meta-narrative evidence synthesis: Evolving standards (RAMESES) BMC Medical Research Methodology, 11(115). http://www.biomedcentral.com/14712288/11/115 Johnson, M. (2006). Ethnicity. In: Killoran, A., Swann, A C. & Kelly M. (Eds.) Public health evidence: changing the health of the public. Oxford: University Press.

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Jones, C.P., Jones, C.Y., Perry, G.S. & Barclay, G. (2009). Addressing the Social Determinants of Children’s Health: A Cliff Analogy. Journal of Health Care for the Poor and Underserved, 20(4), 1-12. Juneau, C.E., Jones, C.M., McQueen, D.V. & Potvin, L. (2011). Evidence-based health promotion: an emerging field. Global Health Promotion, 18(1), 79-89, 122-33, 157168. Liu, J.J., Davidson, E., Bhopal, R.S., White M., Johnson M.R.D. & Netto G. (in press). Adapting health promotion interventions to meet the needs of ethnic minority groups: mixed methods evidence synthesis. Health Technology Assessment. Pawson, R., Greenhalgh, T., Harvey, G., & Walshe, K. (2005). Realist review – a new method of systematic review designed for complex policy interventions. Journal of Health Services Research & Policy Supplement, 1, 21-34. Pawson. R. & Tilley, N. (1997). Realistic evaluation. London: Sage. Pawson, R. (2006). Evidence-based policy: a realist perspective. London: Sage. Rychetnik, L., Frommer, M., Hawe, P. & Sheill, A. (2002). Criteria for evaluating evidence on public health interventions. Journal of Epidemiology and Community, 56, 119-127. Sheppard S., Lewin S., Straus S., Clarke M., Eccles M.P., Fitzpatrick R., (2009). Can we systematically review studies that evaluate complex interventions? PloS Medicine, 6(8). http://bit.ly/wuL6wP Tang, K.C., Ehsani, J.P. & McQueen, D.V. (2003). Evidence based health promotion: recollections, reflections, and reconsiderations. Journal of Epidemiology and Community Health, 57(11), 841-843. Taylor-Piliae, R.E., Haskell, W.L. & Froelicher, E.S., (2006a). Hemodynamic responses to a community-based Tai Chi exercise intervention in ethnic Chinese adults with cardiovascular disease risk factors.  European Journal of Cardiovascular Nursing, 5(2), 165-174. Taylor-Piliae, R.E., (2006b). Improvement in balance, strength, and flexibility after 12 weeks of Tai chi exercise in ethnic Chinese adults with cardiovascular disease risk factors. Alternative Therapies in Health & Medicine, 12(2), 50-58. Tran, A.T., Straand, J., Diep, L.M., Meyer H.E., Birkeland, K.I. & Jenum, A.K. (2011). Cardiovascular disease by diabetes status in five ethnic minority groups compared to ethnic Norwegians. BMC Public Health, 11, 554. US DoH (2000). Healthy People 2010. 2nd ed. With Understanding and Improving Health and Objectives for Improving Health. 2 vols. Washington, DC: U.S. Department of Health and Human Services. White, M., Carlin, L. & Rankin J. (1998). Effectiveness of interventions to promote healthy eating in people from minority ethnic groups: a review. London: Health Education Authority. Wild, S., Fischbacher, C., Brock, A., Griffiths, C. & Bhopal, R. (2007) Mortality from all causes and circulatory disease by country of birth in England and Wales 2001-2003. Journal of Public Health, 29, 191-98.

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Wong, G., Greenhalgh, T. & Pawson, R. (2010). Internet-based medical education: a realist review of what works, for whom and what circumstances. BMC Medical Education, 10(12). http://www.biomedcentral.com/1472-6920/10/12 WHO (2005). Preventing chronic diseases: a vital investment: WHO global report. Geneva: Department of Chronic Diseases and Health Promotion, World Health Organization.

Involvement of migrants in health promotion interventions

Chapter 19

Involvement of migrants in health promotion interventions: results of the EU project ‘Healthy Inclusion’

Daniela Kallayova & Marek Majdan

1. Introduction The health of migrants and health issues associated with migration are significant public health challenges faced by governments and societies today. Migration is a phenomenon in today’s globalised world and increasingly a necessary component of social and economic development in all countries (Davies et al., 2009). According to Sally Hargreaves, an expert in migrant health at Imperial College, London, “there is a real need to explore and document models of best practice in the developedworld context for delivering services to various migrant groups, and their impact on health outcomes” (WHO, 2008). Many migrants belong to the most vulnerable and exposed social strata in society and require special consideration in public health strategies. Additionally, a lack of information and other communication problems create barriers for gaining access to health-promoting interventions. Thus, equal access and quality of the general health services are essential for enhancing the health level of migrants. This applies not only apply to healthcare services, but also to prevention strategies and health promotion interventions. According to the Ottawa Charter (WHO, 1986) and the WHO Health Promotion Glossary (WHO, 1998): Health promotion is the process of enabling people to increase control over the determinants of health and thereby improve their health. Health promotion represents a comprehensive social and political process; it not only embraces actions directed at strengthening the skills and capabilities of individuals, but also actions directed towards changing social, environmental and economic conditions so as to alleviate their impact on

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public and individual health. Health promotion is the process of enabling people to increase control over the determinants of health, thereby improving their health.

The health dimension of migration is a critical issue for the EU and for the member states. In this chapter we will give a brief account of the project ‘Healthy Inclusion’, a study of health promotion activities aimed at migrants in eight EU countries, and its main results. 2. The project The ‘Healthy Inclusion’ project was carried out within the EU Public Health Programme 2003-2008 and lasted from July 2008 to July 2010. Eight EU member states took part in the project consortium: Austria, Czech Republic, Denmark, Estonia, Germany, Italy, the Netherlands and Slovakia. In each country (except Germany, whose role was to evaluate the project) national investigations were carried out. The project was coordinated by the Red Cross Research Institute (Austria) and its general objective was to contribute to raising migrant participation in health promotion interventions. It had the following aims: – Gain knowledge about barriers for migrants in accessing health promotion interventions; – Gain knowledge about positive factors for participation of migrants in health promoting activities; – Raise awareness on the importance of migrants’ needs concerning the design of health promotion interventions; – Contribute to networking of relevant actors in the field of migration and health. The countries in which research was carried out could be divided into ‘Old EU member states’ (Austria, Denmark, Italy and the Netherlands) and ‘New EU member states’ (Czech Republic, Estonia, and Slovakia). In 2010, the proportion of foreign-born persons in the first group of countries in 2010 was respectively 15.2%, 9.0%, 8.0% and 11.1% (Vasileva, 2011). In the second group, 3.8% were foreignborn in the Czech Republic and 1.0% in Slovakia (2009 figures). Figures for Estonia (as for Latvia) are misleading because they contain many former Soviet Union citizens who have lived in those countries most or all of their lives, but have been denied citizenship. According to the summary report (Enzenhofer & Kuss, 2010:9):

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...partners were supposed to realise interviews with migrants from the two biggest immigration groups who have lived for at least five years in the particular state with the intention to immigrate permanently and not just being temporary guest-workers. If these aspects were not appropriate to the country’s situation, partners had the choice to expand the ‘radius’ in order to find those respondents most reflecting the migrants’ real living situation in the country.

The aims of the project were achieved through the following activities: – Reviewing national literature concerning the situation regarding migration and health promotion in each country; – Carrying out and analysing semi-structured interviews (15 in each country) with health promotion providers; – Carrying out and analysing qualitative interviews with two migrant groups – 10 with migrants who had access to health promotion interventions and 10 with those who did not. – Carrying out a Delphi exploration to justify results derived from the three interview rows carried out by all partners. – Additional contributions were made by an Advisory Board consisting of various experts on migration and on health promotion. In many countries, responsibilities for public health are devolved to the local or municipal level. Enzenhofer & Kuss (2010) noted that local approaches, often realised by NGOs, tend to reach migrants more easily than governmental policies on a national level do. Thus, the chosen setting was a municipal one. Many health promoting activities are provided within the community and therefore Health Promotion and Community Development are often linked. 3. Health promotion and migrants Here we will briefly discuss the situation regarding health promotion in the seven countries that submitted a country report. 3.1 Old EU member states Austria. Migrants in Austria mainly originate in Turkey and ex-Yugoslavia. Health promotion is legally regulated on the one hand by the Gesundheitsförderungsgesetz (law for health promotion) which was established in 1998, and on the other hand by the Allgemeines Sozialversicherungsgesetz (ASVG, Law on General Social Insurance) which was reformed in 1991. The Fonds Gesundes Österreich (FGÖ, Fund for a Healthy Austria) is responsible for health promotion and primary preven-

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tion activities. In addition, there are 22 social insurance companies in Austria and their portfolios offer health promoting activities for their wide spectrum of clients. The main providers offering health promotion interventions and services are social services, health centres or (adult) education centres. Their general target group is the local population. Besides these general programmes, there are also interventions aimed at particular groups such as migrants, in particular given by some health centres in Vienna. In this case migrants are an important target group, as is indicated by the fact that services are offered in different languages (Schopf & Höglinger, 2009). Denmark. Health services in Denmark are based on a welfare model, in which all citizens regardless of background and means have equal access to health promotion, prevention, treatment etc. In order to ensure that this welfare model can be implemented, all public services are free of charge, and there is universal entitlement (with a few exceptions) to free interpreter services if needed. Several Danish health care centres in big-city areas incorporate a focus on migrants. Similarly, several interventions have been created over the last few years which are targeted at migrants. These interventions may be either interventions placed in residential areas with a high concentration of migrant residents, or association initiatives, language school measures or health care centre based activities (Baartrup & Simony, 2009). Italy. The health promotion plans in Italy can be found in documents of the Ministry of the Health, entitled ‘National Health Plan’ and in the document ‘Agreement for Health’ (a formal agreement between central and regional governments). Health promotion plans and interventions, indeed, can be agreed upon a national level and launched through plans and campaigns belonging to the Ministry of Welfare; may involve several Regions; can be planned and provided from a single Region; and can be planned and provided in/by a single Local Health Authority or Health District. On all institutional levels, the health promotion interventions can be provided in partnership with NGOs, non profit organisations (NPOs) and private stakeholders. Regions, which are able to guarantee equal access to health services for migrants, collaborate with the State in an entity called CCM (Centre for the Control and the Prevention of Diseases). CCM deals with intercultural education for health professionals, with guaranteeing the presence of intercultural mediation in health services, and with promoting migrants’ participation using strategies of communication. Since the second half of 1990s, in the planning of regional interventions there has been an increase of health promotion interventions addressing migrants. These interventions include education of professionals in intercultural topics. There are also preventive and health promotion activities focussing on vaccination, women’s health (including pregnancy) and sexually transmissible diseases, prevention of industrial injuries, as well as interventions on mental health (Di Santo et al., 2009).

Involvement of migrants in health promotion interventions

The Netherlands. The Netherlands has a long tradition of concern for migrant health and interventions are more highly developed. In the field of public health, there are specific measures aimed at providing more effective care for low wage earners and ethnic minorities. The development and implementation of prevention policy is a cyclic process in which the National Public Health Status and Forecast Reports (VTV) from the National Institute for Public Health and the Environment (RIVM), the national public health policy documents, and the local authority public health policy documents all build on one another. Most public health services offer specific health promotion activities for (nonWestern) migrants, and increasingly other organisations, such as youth care and mental health care organisations, do so as well, especially those in areas with large migrant groups (Van Vliet et al., 2009). Recent government policy has reversed the policy (dating back to the 1970s) to provide health information for migrants in their own languages. Van Vliet et al. claim that giving health promotion activities only in Dutch language may have positive effects in the long run, “because it will stimulate people to learn the Dutch language sooner”. However, it is debateable whether migrants are likely to learn a new language in order to get access to health promotion. 3.2 New EU member states Czech Republic. Today as in the past, the majority of migrants come from former Soviet Union countries. Ukrainians form the largest migrant group. The main groups in 2008 were Ukrainian 30% (131,965), Slovak 17% (76,034), Vietnamese 14% (60,258), Russian 6% (27,178), all others 33% (143,326) (Janatová, 2009). Health promotion services are under the responsibility of the Ministry of Health, while research and practice is a task of the National Institute of Public Health and its 14 regional health promotion branches. Health promotion, which in its broader definition encompasses empowerment and participation, is provided for migrants by agencies (governmental and nongovernmental, as well as local and regional authorities). Information about the health care system and health insurance options is provided as part of a wider range of interventions aimed at helping migrants to get better jobs and integrate into the mainstream of society, which also includes social and legal consultancy, Czech language courses, and other education and training. Health promotion is provided for migrants if they participate in ‘Health Days’ in enterprises or in general communities. Estonia. Nowadays Estonia is a multiethnic country with inhabitants from over 100 ethnic groups. On January 1st 2007 the total population of Estonia was 1,342,409 of which 921,062 (68.6%) were Estonians and 421,347 (31.4%) people from other nationalities. The biggest groups are 344,280 Russians, 28,158 Ukrainians, 16,133 Byelorussians, 11,035 Finnish (re-immigration of Estonians) and 21,741 other ethnicities (e. g. Germans, Swedish, Latvian, and British).

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Health promotion interventions are available to ethnic minorities – initiatives and services are often available, according to the ethnic composition of different regions, both in Russian and Estonian. Most publications and campaign materials (leaflets, posters and web based materials) are also bilingual (Reile & Markina, 2009). The aim of the national health promotional structure is to develop priority fields in health promotion on both local and governmental levels; commencing, coordinating and evaluating of these programmes and creating health promotion networks and developing intersectoral collaboration. These tasks are carried out by the National Institute for Health Development (NIHD) which is administered by the Ministry of Social Affairs and by the Estonian Health Insurance Fund (EHIF). Slovakia. Slovakia is becoming a more attractive country for migrants, though it has the lowest percentage of migrants of all the countries studied. For Slovak society, migration is a relatively new phenomenon. There is therefore a growing need to strengthen measures that will facilitate the effective management of migration, including health aspects experience (Marcinkova & Majdan, 2009. Traditionally, Slovakia was a country of origin from which people left to seek better living and working conditions abroad. Based on the numbers of residence permits granted, the Ministry of the Interior (2009, 2010) reported 4,646 temporary residences, 6,871 permanent residences and 273 tolerated residences in 2009, and 6,615 temporary residences, 5,505 permanent residences and 266 tolerated residences in 2010. The main nationalities of those obtaining residence permits in 2010 were Ukrainians (1,068), Serbians (532), Koreans (481), Russian Federation citizens (364), Chinese (357) and Vietnamese (290) (Ministry of Interior, 2010). Numbers in 2010 were lower than in the previous two years. At 30th June 2011, 63,958 persons were staying with valid residence permits in Slovakia, representing 1.2 % of the total population in the country. Public health services in Slovakia are provided by a network of 37 Public Health Institutes. These are public services, funded by Ministry of Health. Health education and health promotion, as part of these services, were established in 1995. Based on the WHO CINDI Programme, health counselling centres have been established as part of the Public Health Institutes to help the population combat the main risk factors for non-communicable diseases. There has not yet been much experience in Slovakia of health promotion services oriented towards migrants. The main interventions offered by the selected organisations are various kinds of counselling and health education activities. There are no programmes to promote migrants’ general integration into society. In general there are problems with participation of the overall population in health promotion interventions. There is a need for increasing awareness of health promotion counselling centres in general, and the motivation of different target groups to participate in interventions. Everybody is legally entitled to free access to health promotion activities, but there is nothing to attract the attention of particular target groups.

Involvement of migrants in health promotion interventions

There is no specific legal document or regulation that would clearly touch the issue of health promotion for migrants or even the general health of migrants in Slovakia. As a former communist country, the social, economic and cultural background of Slovakia is different from that of Western European countries. Although Slovakia has been a member of the European Union since 2004 and recently underwent rapid economic progress, it is still not a target country for large groups of migrants. When talking about health promotion activities focused on migrants, there are some specific issues in Slovakia. Firstly, due to the low number of migrants in migrant communities, they are more dispersed within the major population. Secondly, they do not necessarily identify themselves as being part of a certain migrant community but rather as a part of the majority, and they probably aim to behave as others from the majority. There is a significant absence of health promotion interventions that are directly targeted at migrants. It is not common to have multicultural staff or interpreters in health promotion services in Slovakia today. This indicates a communication gap between both providers and migrants. There is a strong need for bridging the communication deficiency with effective communication tools by public health educators and professionals in the future. The lack of general interest in foreigners coming to and living in Slovakia might be also caused by the fact that there are two minorities drawing an exceptional amount of interest. In particular, the Hungarian and Roma minorities attract almost all the attention that can be attributed to foreigners in Slovakia, partly because of political perspectives on these issues (Pleschova, 2007). Health promotion interventions are more often focused on Roma communities rather than on migrants. Health promotion professionals educate inhabitants of Roma settlements about lifestyle, infection diseases and vaccination; health education activities have a strong focus on mother and child health issues. 4. Providers’ perspectives on health promotion interventions for migrants The interaction of public officials and professionals of different kinds with migrants has many specific aspects and often requires specific approaches. Health promotion is an activity in which interaction and communication with the target population is key. For a health promotion program to be successful, several conditions must be met from the phase of its planning to its implementation and evaluation. A health promotion intervention must, in many ways, reflect the characteristics of the community in which it is implemented. Every target community or population has its own specific requirements regarding cultural, behavioural, religious and educational background, life styles (including eating habits) or housing. An effective and successful health promotion program takes all of these specific issues into consideration and adjusts its approach and implementation style or methods

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to these requirements (Netto, 2010). Within the ‘Healthy Inclusion’ project, one of the objectives was to find out the views of health promotion providers on the participation of migrants in their programs, factors which facilitate or hinder their participation, and whether they have developed specific strategies or solutions to improve the participation of migrants in health promotion activities. It is important to mention that there are several levels on which the success of a health promotion program among migrants, and the participation of migrants in such activities, can be improved. For the purpose of our project we have defined three levels (Van Vliet, 2008). – Firstly, there is the level of the intervention itself, which involves the people implementing a specific health promotion program in a specific community. Here, the personal experience of those involved, their language skills and acceptance by the respective community plays a crucial role. – Secondly, there is the level of the institution offering the program or intervention. Factors such as availability of resources (human, monetary or other), enough time and experience to plan and conduct health promotion activities, and the general image and perception of the organisation in the community, all play an important role in improving migrant’s participation in health promotion. – Thirdly, the framework of local or higher level governmental bodies and the legislation, rules and procedures can have impacts on both the success of the activity and the participation of migrants. Specific action plans for general improvement of the health of migrant groups, highlighting health promotion as an important tool) can back up health promotion activities and thus contribute to increased confidence among migrants. However, the degree to which migrants are considered as a specific target group for health promotion activities is also highly dependent on the migrant profile of the country: – Countries with large urban conglomerations like Austria, the Netherlands, Denmark or Italy have been the destination of migrant groups for decades. Thus, the migrant communities there are well established and organised, and both formal and informal organisations exist which bring them together. This provides more opportunities for reaching them and communicating with them. As a consequence of growing migrant communities, governments and authorities in different fields are forced to address their problems by formulating specific policies for migrants.

Involvement of migrants in health promotion interventions

– On the other hand, there are countries which only recently became destinations for migration. Good examples are the countries of the former Communist bloc in Europe, such as Slovakia, the Czech Republic or Estonia. In all these countries the issue of migration is only beginning to emerge, and health promotion providers and governments have much less experience in dealing with these specific communities and meeting their needs. Although providers’ views on the participation of migrants in health promotion activities differed somewhat between the countries involved in the project, there are several issues on which most of them were agreed. As mentioned above, providers in Austria, the Netherlands, Denmark and Italy have more experience with migrants participating in their programs (Baatrup Tine, 2009; Di Santo, 2009; Schopf, 2009; Van Vliet, 2009), while providers from Slovakia, the Czech Republic and Estonia reported less experience (Marcinkova & Majdan, 2009; Janatová, 2009; Reile, 2009). However, most providers agreed that understanding and considering the cultural background of the migrant communities, including their religious and lifestyle beliefs and principles, is a key factor in involving them. All providers stated that if a health promotion activity is aimed at a specific migrant group it should be in their mother tongue, since the knowledge of the host country’s language is in many cases very limited. Knowledge about health promotion itself emerges as a crucial issue. There are a number of interviewed providers who think that the level of understanding of the principles of health promotion in the population is rather limited. This is not only true for the migrant communities but for the population as a whole. This problem is particularly acute in postcommunist countries where traditionally the public health system differed from modern Western models and almost entirely lacked the concept of health promotion. The transition in these countries towards new models of public health is a slow process and as a consequence, the principles of health promotion are not entirely known and accepted even by health professionals. Most providers also agreed that when reaching out to migrant communities and involving them in health promotion activities, a proactive approach should be used. In the providers’ experience there is usually a serious lack of knowledge about the existence of health promotion activities within the respective migrant groups. The lack of knowledge of the host country language and the isolation from the majority population that this leads to, means that migrants are not aware of the existence of such activities in their area and do not know that they can participate in these activities. Therefore, providers must take the initiative and proactively seek their target communities. Doing so in the language of the community can lead to more successful recruitment of participants (Baatrup Tine, 2009; Di Santo, 2009; Janatová, 2009; Marcinkova & Majdan; Reile, 2009; Schopf, 2009; Van Vliet, 2009). It can also help that recruitment or the propagation of health promotion activities is carried out by members the migrant community in question and with the

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endorsement of religious or other types of leaders or organisations from within the community. Many of the interviewed providers agreed that the reputation and the image of the organisation offering the activity have a considerable impact on its acceptance. Once the potential participants have confidence in the providing organisation, the rate of participation can increase significantly. Providers in most countries agreed that support and endorsement from municipalities, local authorities, governments or from general practitioners, immigration officers or other public representatives dealing with migrants can lead also to a higher degree of trust in health promotion providers and the principles of health promotion. The points mentioned are only a selection of the most important issues which came out after interviewing health promotion providers in the seven countries that participated in the project. It is clear that organisations offering health promotion activities or programs for particular groups, such as migrants, need to be aware of the specific issues in approaching them, in gaining their confidence and attention and in implementing activities. Being experienced in offering health promotion activities in the majority population of the host country might not be sufficient to successfully work with migrant communities. 5. Migrants’ perspectives on participation in health promotion 5.1 Old EU member states Austria. A common understanding of health among interviewed migrants was: “Health means being able to work”. Many of the interviewees’ stressed the importance of their ability to work as a resource for their everyday life. Migrants mention the following reasons for non-participation: lack of knowledge about existing services, lack of time for attending them (because of being too tired and exhausted by their working life), an assumption that the attending fees for health-related activities are too expensive, or a lack of interest, because there is no immediate reason (“I do not feel ill”) (Schopf, 2010). Denmark. The interviews show that only a minority of the interviewed migrants have knowledge of the Danish health system; even the users of health promotion initiatives have little knowledge. Users of health promotion activities had heard about the initiative from personal contacts such as friends, doctors, staff of the health promotion initiatives with the same migrant background, or social workers in the municipality. Non-users reported that they do not feel the need to participate in health promotion activities because they regard their health as good. Other reasons for non-participation were lack of time and poor language skills (Sommer et al., 2010).

Involvement of migrants in health promotion interventions

Italy. Both migrants with and without access declare that they do not have a complete knowledge of the services and how to get access to them. Even those who consider themselves well-informed often do not know if the services are free or paid and if they are allowed to use them or not. All the interviewees believe that their behaviour and lifestyle can affect their health condition, except for a young respondent who declared: “I’m young and I don’t care” (Di Santo et al., 2009). The Netherlands. Respondents appeared to be aware of the existence of healthpromoting activities and could give examples spontaneously. Lack of time was occasionally mentioned as a reason for non-participation. Non-participants often attached conditions to participation in a health-promoting activity: They might only be interested in a sport they like, their state of health must permit it, the activity must be nearby, there must be a child care service, or the timing should fit in with their children’s school hours or their own cultural and religious background must be taken into account (Gruijter et al., 2010). 5.2 New member states Czech Republic. The interviewed migrants encountered health promotion either by chance or by taking advantage of an opportunity offered by their employers. They participated mostly without any specific aim in mind, such as staying healthy or promoting their own health. Most respondents stated that they had no information concerning health promotion prior to their first participation. But still they were pleased with the health promotion services they had used. Almost all found it useful, interesting and even good fun (Janatová et al., 2010). Estonia. Respondents who did not use health promotion initiatives explained their non-participation as mainly due to lack of time. Statements about ‘lack of time’ were often mentioned together with expressions of ‘laziness’ and ‘lack of interest’. Lack of interest was also interrelated with scepticism about possible benefits of interventions. Another important issue regarding reasons for not using health promotion initiatives is lack of information. (Reile & Markina, 2010). Slovakia. Most migrants interviewed had initially received some information about their rights and possibilities in the healthcare system in Slovakia. The main sources of information were medical doctors, health workers, and friends. However, they did not have information regarding the existence of health promotion and did not know about the health promotion activities that they could use for free. As a result, utilisation of health promotion services is low. Migrants are hidden from providers and dispersed in the general population; health promotion interventions are hidden for migrants. Migrants do not know where to go and what activities to attend Respondents described reasons for not using health promotion interventions as follows: they have low ability to speak Slovak, even though they may understand

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the language; they have no possibility of finding an interpreter; they don’t pay attention to health promotion at all; they have no interest; or they have no time. It is not feasible to have multicultural staff or interpreters in health promotion in Slovakia today. (Kallayova, 2009). 6. Recommendations The main outcome of the project is a set of recommendations to increase the participation of migrants in health promotion activities. A Delphi survey was conducted in every project partner country. In two rounds, a questionnaire was sent to experts to consider a number of propositions about migrant’s participation in health promotion activities. Over 100 experts in the seven countries took part in the survey. The results served as a basis for developing a set of recommendations in each country. The country recommendations were then analyzed and were summarised in a set of European recommendations. Although the results of the Delphi survey were the basis for these recommendations, it is important to mention that the results and outcomes of the interviews with migrants and health promotion providers (summarised in this chapter) were also incorporated, since the propositions in the Delphi questionnaire were based on these results. Thus, the whole range of views and opinions are reflected in the final recommendations, summarised under the following headings (Enzenhofer, 2010): Focus on the universal approach of health (promotion) for all According to the ‘health for all’ approach, health can be seen as a horizontal mainstream issue in all policies and as a product of several factors which require a complex and intersectoral approach with broad collaboration on different levels. Only this can yield adequate resources, political commitment, and structural changes in the health care and other policy sectors. As health promotion is a major contribution to the goal of ‘health for all’, health promotion initiatives should be available and accessible for all. That requires affordable and locally accessible activities. Consider specific needs Migrants are not homogeneous – they are a very diverse group. This calls for differentiated analysis of target groups, knowledge exchange, and personal encounters with migrants and other target groups to hear their needs and demands. Therefore it is important to apply a differentiated, dynamic understanding of target groups which includes socio-cultural dimensions such as social and educational background, living situation, gender, and age. Also, individual needs should be taken into account in order to cope with the individual in a groups’ immanent heterogeneity.

Involvement of migrants in health promotion interventions

Employ specific communication strategies Heterogeneous target groups require flexible communication approaches. Proactive communication and recruiting strategies could be particularly helpful in reaching those people who do not have the ability, skills, means, or power to ask for health promotion interventions themselves. Communication strategies should make use of different forms, channels, and approaches. Respected members of the targeted community could act as advocates; written materials and face-to-face meetings such as information days should be offered; people should be met where they are located, and information should be spread, shared, and also gained through existing information channels and networks, e. g. civil society organisations, schools, work places, day care centres, and so on. Foster exchange of knowledge Knowledge and experiences of different persons working in the field of migration or health (promotion) are often not transferred from one to the other. Therefore, there should be sufficient attention and funds for dissemination activities, evaluation, research, and development of quality standards in order for all to benefit from each other’s experiences. Provide knowledge to those who are targeted Knowledge pervades all levels of society and thus should be recognised and implemented at both political and organisational levels equally. This is relevant for the general public’s understanding about health issues; particularly for those who are targeted by interventions. Thus, information needs to be conveyed to migrants concerning the health care system, the concept of health promotion, health promoting activities, but also about citizens’ and migrants’ rights. An equitably institutionalised knowledge exchange between providers and migrants’ organisations, not only about relevant services and rights but also regarding topics and approaches, would be helpful. Compose diverse teams Diversified target groups need diverse providers. Thus, staff should – besides a high standard of professional skills – offer a broad base of competences, talents, views, and at best, intercultural experience or background, reflecting the targeted and surrounding community. Taking advantage of this diversified approach would be supportive for creating an environment of trust for the potential clients and making them feel welcome. A diverse team with broad competences can offer such diverse interventions. To make that possible, a clear organisational commitment is to be recommended which includes resources for intercultural training of all staff members, contemplative reflection, knowledge exchange and enhancement, and for example the creation of a dialogue forum for discussing relevant issues whilst exchanging effective implementation strategies.

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Include different views and approaches in planning health promoting interventions People hold different views. Thus, the involvement of users (natives and migrants) into the planning phases could help contribute to meeting the needs of the targeted group, enhancing the outreach of a specific intervention and strengthening promotion of the intervention within the specific community. Integrate diverse interventions into practice Different people respond to different kinds and structural frames of interventions, irrespective of origin. In accordance with the diversity approach it is advisable to integrate special offers for specific target groups into general practice, in order to embrace migrants as part of the society instead of viewing them as a problematic group. Use the host country language if possible and native languages if necessary Language is more than just a means of communication. Language is an integrated part of a human being and builds relevant channels for expressing ourselves and for understanding of and communicating with others. Offering effective health promotion interventions requires that they ‘fit’ the target groups. This implies that participants understand the goal, methods used, and activities accomplished and can express themselves freely and easily. Therefore, the decision whether to use the host country’s language or native languages of migrants in health promotion should be assessed individually based on the target group’s needs. Encourage active networking The inclusion and involvement of different groups of professionals in planning, providing, and evaluating health promotion initiatives is a precondition for sharing powers, rights, and responsibilities. This would create the ideal situation for synergies, exchange of good practices, and different approaches and strategies to be implemented. Focused networks and broad collaboration would spread mutual understanding, increase interest for and trust in approaches and activities, information and communication exchange, and improve quality standards. Include different channels and sectors Collaboration should be realised not only amongst different parties within the fields of health and migration, but also between different sectors and their representing organisations like governmental and non-governmental organisations, civic organisations, social and educational institutions, labour associations (trade unions, enterprises) or welfare. Thus, institutionalised networking should be extended and stabilised, and informal networks should be encouraged by establishing steering committees, round tables and consultative bodies, mainly on a local/community level.

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Acknowledgements The authors would like to extend their thanks to national partners: National Institute of Public Health (Czech Republic), Mhtconsult (Denmark), Institut für Soziale Infrastruktur (Germany, project evaluator), Studio Come S.r.l. (Italy), VerweyJonker Instituut (The Netherlands) for their substantial support and assistance, in particular Barbara Kuss, Anna Schopf, Bianca Lutz, Patrizia di Santo, Mariantoinetta Cavallo, Margit Helle Thomsen, Henning Schultz, Amalie Maj Sommel, Tore Sorensen, Katja von Vliet, Marjan de Gruijter, Trees Pels, Hana Janatova, Ludmila Skalova, Vladimir Kebza, and Constance Ohms. The authors are also deeply thankful to all selected health promotion providers, and selected interviewed migrants since without their readiness and understanding the project data could not have been analyzed. The ‘Healthy Inclusion’ project was funded by the European Commission, DG Health and Consumers, Public Health. Nationally funded by Fonds Gesundes Österreich (Austria) and The Netherlands Organisation of Health Research and Development (ZonMw) (Netherlands). Project was coordinated by Forschungsinstitut des Roten Kreuzes, Austria. References Baatrup, T. & Simony. K. (2009). Providers’ perspectives on participation of migrants in health promotion in Denmark and Sweden. Empirical analysis I: Interviews with providers. National Report – Denmark. Helsingør: mhtconsult ApS. Davies, A., Basten, A., Frattini, Ch. (2009. Migration: A social determinant of the health of migrants. Background paper, Assisting Migrants and Communities (AMAC) Project. Brussels: International Organization for Migration. http://ec.europa.eu/ ewsi/UDRW/images/items/docl_9914_392596992.pdf Di Santo, P., Cavallo, T. & Di Cesare, S. (2009). Providers’ perspectives on participation of migrants in health promotion in selected Regions of Italy. Empirical analysis I: Interviews with providers. National report – Italy. Rome: Studio Come s.r.l. Di Santo, P., Cavallo, T. and Di Cesare, S.2009): Migrants’ perspectives on participation in health promotion in Italy. Empirical analysis II and III: Interviews with migrants from Morocco, Romania and Albania with and without access. National report – Italy. Rome: Studio Come s.r.l. Enzenhofer, E. & Kuss, B. (2010). Participation of Migrants in Health Promoting Interventions – European Results from Seven EU Member States. Vienna: Forschungsinstitut des Roten Kreuzes. Gruijter, M., Van Vliet, K. & Bulsink,D. (2010). Migrants’ perspectives on participation

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in health promotion in The Netherlands. Empirical analysis II and III: Interviews with migrants with and without access. National report – The Netherlands. Utrecht: Verwey-Jonker Instituut. Janatová, H. (2009). Providers’ perspectives on participation of migrants in health promotion in the Czech Republic. Empirical Analysis I: Interview with providers. National report – Czech Republic. Prague: National Institute of Public Health. Janatová, H., Ríhová, L. & Chodera,R. (2010. Migrants’ perspectives on participation in health promotion in the Czech Republic. National report – Czech Republic. Prague: National Institute of Public Health. Kallayova, D. (2009). Migrants’ perspectives on participation in health promotion in Slovakia. Empirical analysis II and III: Interviews with migrants from selected countries with and without access. National report – Slovakia. Trnava: Faculty of Health Care and Social Work, Trnava University. Marcinkova, D. & Majdan, M. (2009). Providers’ perspectives on participation of migrants in health promotion in the Slovak Republic. Empirical analysis I: Interviews with providers. National report – Slovakia. Trnava: Faculty of Health Care and Social Work, Trnava University. Ministry of Interior (2010). Statistical overview of legal and illegal migration in the Slovak Republic. Bratislava: Ministry of Interior of the Slovak Republic. Ministry of Interior (2011). Statistical overview of legal and illegal migration in the Slovak Republic. Bratislava: Ministry of Interior of the Slovak Republic. Netto, G., Bhopal, R., Lederle, N., Khatoon, J. & Jackson, A. (2010). How can health promotion interventions be adapted for minority ethnic communities? Five principles for guiding the development of behavioural interventions. Health Promotion International, 25(2), 248-57. Pleschová, G. (2007). Chinese Migrants in Slovakia. epsNet General Conference Europe: Integration and/or Fragmentation? Bratislava: Comenius University. http://bit.ly/ wl8B2i Reile, R. & Markina, A. (2009). Perspectives of Providers on Participation of Migrants in Health Promotion in Estonia. National Report – Estonia. Tartu: University of Tartu. Reile, R. and Markina, A. (2010). Migrants’ perspectives on participation in health promotion in Estonia. Empirical analysis II and III: Interviews with migrants from selected countries with and without access. National report – Estonia. Tartu: University of Tartu. Schopf, A. (2010). Migrants’ perspectives on participation in health promotion in Austria. Empirical Analysis II and III: Interviews with migrants from Ex-Yugoslavia and Turkey with and without access to health promotion interventions in Vienna. National report – Austria. Vienna: Forschungsinstitut des Roten Kreuzes. Schopf, A.& Höglinger, M. (2009. Providers’ perspectives on participation of migrants in health promotion in Vienna. Empirical analysis I: Interviews with providers. National report – Austria. Vienna: Forschungsinstitut des Roten Kreuzes. Sommer, A.M., Baatrup, T. & Simony,K. (2010). Migrants’ perspectives on participation

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in health promotion in Denmark. Empirical analysis II: Interviews with migrants. National report – Denmark. Helsingør: mhtconsult ApS. Van Vliet, K. & Gruijter, M. (2008). Healthy Inclusion WP4 – Interview guide Providers. Utrecht: Verwey-Jonker Institute. Van Vliet, K., Gruijter, M. & Bulsink, D. (2009). Providers’ perspectives on participation of migrants in health promotion in The Netherlands. Empirical analysis I: Interviews with providers. National Report – The Netherlands. Utrecht: Verwey-Jonker Institute. Vasileva, K. (2011). 6.5% of the EU population are foreigners and 9.4% are born abroad. Eurostat: Statistics in focus, 34, 1-8. WHO (1986). Ottawa Charter for Health Promotion. Geneva: World Health Organization. WHO (1998). Health Promotion Glossary. Geneva: World Health Organization. WHO (2008). Overcoming migrants’ barriers to health. Bulletin of the World Health Organization, 86(8), 577-656.

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Chapter 20

Breast cancer screening among immigrant women: do we need specific approaches in risk communication?

Eva-Maria Berens, Jacob Spallek & Oliver Razum

1. Introduction: breast cancer screening in Europe In Europe, breast cancer was the most common cancer among women in 2006. According to 2006 estimates of the International Agency for Research on Cancer, there were 331,000 breast cancer cases accounting for 30 per cent of all cancer cases among women in the European Union (EU). With approximately 90,000 deaths, breast cancer was the second commonest cause of death among women in the EU in 2006 (European Commission, 2008). In order to reduce cancer-related deaths and the frequency of severe side-effects of late-stage treatment on quality of life, breast cancer screening has been implemented in most European countries. In most of these countries breast cancer screening is offered as a population based, nationwide screening programme. According to the European Council recommendation (European Commission, 2006), women between 50 and 69 years of age should be personally invited by post every other year to the screening unit in their area of residence. However, not all countries have implemented breast cancer screening according to these recommendations. In the Netherlands, for example, women between 50 and 75 years are eligible for screening. In the UK, screening is offered only every three years (European Commission, 2008). In Sweden and the Netherlands, breast cancer screening was already implemented in the late 1980s and reached nationwide coverage in 1997 (Autier et al., 2011). In Germany, the nationwide breast cancer screening programme was only fully implemented in 2009 (Kooperationsgemeinschaft Mammographie, 2009).

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In 2007 more than 59 million women aged between 50 and 69 years resided in the EU, so this number was eligible for breast cancer screening based on mammography. It is estimated that about 21 million women were personally invited and approximately 12 million women attended breast cancer screening programmes in the EU in 2007 (European Commission, 2008). The way preventive measures are implemented is usually difficult to compare between different European countries due to the differences in health care systems. Though there are differences in eligible age-groups and frequency of invitation, breast cancer screening programmes can be considered as a European public health issue: Firstly, breast cancer is common in all countries; secondly, recommendations are broadly similar; and thirdly, the benefits and harms of breast cancer screening apply throughout the EC. A number of challenges remain that are particular to certain countries. For example, attendance rates vary widely between countries. In Finland, 87.5 per cent of the invited women are screened. In the Netherlands, the attendance rate is also above 80 per cent. In France, however, only 46.4 per cent and in Belgium only 29 per cent of the women invited take part in screening (European Commission, 2008). There is even wider variation between (and fewer data on) participation rates among socioeconomically disadvantaged subgroups of the EC populations. The aim of this chapter is to illustrate the specific situation of migrant women with regard to breast cancer screening programmes. Screening uptake and determining factors among migrant populations will be described. Furthermore, differences in breast cancer risk and its impact on the efficiency of breast cancer screening among migrants will be assessed. We will be discussed critically whether lower uptake rates among migrants should necessarily lead to measures to increase uptake. A special focus will be on risk communication and informed choice. 2. Uptake and determinants of breast cancer screening among migrants in Europe Migrants account for a considerable proportion of the population in most European countries. Various divergent definitions are in use to categorise the target population, e.g. foreign-born persons, foreign nationals and offspring of migrants. Almost 59 million foreign-born residents resided in the EU in 2010, corresponding to 9.4 per cent of the total population. Germany, France, the United Kingdom, Spain, Italy, the Netherlands, Sweden, Austria and Greece each have over 1 million foreign-born residents. The proportion of foreign-born persons varies between EU member states. In Luxembourg, foreign-born persons accounted for 32.5 per cent of the population. In 15 other EU member states, this proportion was 10 to 20 per cent of the total population in 2010 (European Commission, 2011). The number of

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foreign-born persons is usually higher in young adult age groups than among the elderly. The largest groups of migrants living in EU countries are of Turkish and Romanian origin, not taking into account e.g. the so-called resettlers (ethnic German immigrants from the former Soviet Union). In addition, about six million nativeborn persons aged 25 to 54 years had one parent born abroad, and more than four million had both parents born abroad, in 2009 (European Union, 2011). Thus the number and proportion of foreign-born persons in age-groups relevant for cancer screening will increase rapidly in the next decades. In several European countries the uptake rates of breast cancer screening are lower among migrant populations than among the autochthonous population. There is also variation in screening participation between migrants of different origins within the same country (e.g. Moser et al., 2009; Lagerlund et al., 2002). A study in the Netherlands shows a participation rate of 44 per cent among Turkish migrants in North-Holland and parts of Flevoland (1995-2005) compared to an overall rate of 79 per cent. Older Turkish women were less likely to attend (40 per cent) than younger Turkish women (50 per cent) (Visser et al., 2005). A recent study shows an increase in the participation rate among Turkish migrants from 50 per cent in 1997-1998 to 62 per cent in 2007-2008. It remains, however, substantially lower than the overall participation rate of 80 per cent in 1997-1998 and 83 per cent in 2007-2008 (Vermeer and Van den Muijsenbergh, 2010). A pilot study from Germany confirms differences in screening uptake among women of Turkish origin. Among those aged between 60 and 69 years, a smaller proportion (38 per cent) attended the screening than among younger (50-59 years) women (56 per cent). These differences do not show in the majority population (Berens, 2010). In summary, the chance of early detection and successful treatment of breast cancer differs between migrant women and women of the autochthonous population, as well as between subgroups within the migrant populations. From a public health perspective, we need to know which factors are related to screening uptake in the general population and whether these are different in migrant populations. Studies investigating factors associated with breast cancer screening uptake among migrant and autochthonous populations show, for example, that older women are less likely to participate. Having no children and no partner also increases the chance of not participating in screening. Further, women among both autochthonous and migrant populations with lower educational status are less likely to attend; the same is the case for women without a car, or who do not own their own home, and those living a long distance away from the screening unit (Lagerlund et al., 2002; Puddu et al., 2009; Bulliard et al., 2004; Fontana and Bischoff, 2008; Moser et al., 2009; Lampert, 2005). This information helps to identify subgroups with low uptake, but it provides no information about the practical measures that need to be implemented for improving it. Additional factors that need to be studied are the perceived safety of the

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screening method as well as attitudes towards the invitation letter (Naß-Griegoleit et al., 2009). A review by Hartman and colleagues (2009) of reasons for non-attendance in breast cancer screening among Turkish and Moroccan immigrants (including cervical cancer screening) found that lack of knowledge, lack of awareness about the disease, organizational issues and socio-cultural issues like language skills influenced screening participation. 3. The impact of differences in screening uptake among immigrants But does the fact that participation rates in cancer screening among migrant populations are different from autochthonous populations itself make immigrants a special target group for cancer screening? Some think it does, arguing that differences in uptake are an indicator of inequalities in access to health care which can contribute to inequalities in health. This would imply that measures should be implemented to improve rates of uptake among migrants as a priority target group. In fact, many organisations and programmes follow this line. While such an approach has its merits, it also has limitations which need to be made explicit and discussed. Firstly, knowledge about the factors that have an impact on uptake, especially among migrants, is scarce. Secondly, the prevalence of early breast cancer and thus the effectiveness of screening in migrant populations may differ from that in majority populations of Western industrialised countries. This would have implications for screening recommendations. 4. Effectiveness of breast cancer screening Breast cancer screening, like any other screening measure, has both benefits and disadvantages. A major aim of population-based programmes is the reduction of mortality from breast cancer. Researchers from Denmark calculated that “If 2000 women are screened regularly for 10 years, one will benefit from screening, as she will avoid dying from breast cancer because the screening detected the cancer early” (Gøtzsche et al., 2008: 5). On the other hand, breast cancer screening can lead to overdiagnosis and overtreatment. Gøtzsche et al. (2008: 5) also state that “If 2000 women are screened regularly for 10 years, 10 healthy women will be turned into cancer patients and will be treated unnecessarily. These women will have either a part of their breast or the whole breast removed, and they will often receive radiotherapy, and sometimes chemotherapy”. Additional possible benefits and harms include psychological issues like anxiety, relief or false relief which are closely connected to the imperfect performance of a screening test in terms of sensitivity, specificity and positive predictive value (the latter also depending on the prevalence of the condition screened).

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The German Joint Federal Committee (2010) (Gemeinsamer Bundesauschuss)1 provides a detailed overview of possible advantages and disadvantages of breast cancer screening; it is published in the official information leaflet addressing womINSERTS en. Figure 1 illustrates a hypothetical example of 200 women who attend breast cancer screening bi-annually for 20 years. During this time period, 13 cases of breast will be identified, 10risks of them at an early stage throughinscreening Figure 1: cancer Flowchart of benefits and of breast cancer screening Germanyand 3 of them through clinical symptoms. Adapted from Joint Federal Committee (2010). Figure 1: Flowchart of benefits and risks of breast cancer screening in Germany Adapted from Joint Federal Committee (2010).

200 women who participate in mammography screening programme every two years for 20 years

140 women do not receive abnormal results in 20 years

60 women receive results which should be followed up on

40 receive an ‘all-clear’ in the follow-up exam 20 women are recommended to have a tissue sample taken 10 of the suspicions turn out to be unfounded

3 women are diagnosed with breast cancer in the 20 years between two screening rounds

10 women are diagnosed with breast cancer in the screening

1 The Federal Joint Committee is the highest decision-making body of the joint selfgovernment of physicians, dentists, hospitals and health insurance funds in Germany.

Breast cancer screening among immigrant women

Of the 13 women who receive a diagnosis of breast cancer, 3 women will die of breast cancer and 10 women will not. Of the 10 women who do not die of breast cancer, 1 woman would not have known about her breast cancer during her lifetime without the mammography, while 8 women would also have been treated successfully without participating in the mammography screening programme. Some of those would have been treated with a more aggressive therapy. One out of every 200 women regularly participating in screening derives a clear benefit from participating: She would have died from breast cancer had she not participated (Joint Federal Committee, 2010). The patient information from Figure 1 can be put into a contingency table to calculate the benefits and disadvantages of the screening test (see Table 1). All women who receive a result which needs to be followed up are defined as having a positive test result (a+b). They will experience psychological stress and anxiety until a diagnostic test is conducted. Only women who are diagnosed with breast cancer in the screening after the tissue sample was taken are considered to have breast cancer and a positive screening result (a). All women who receive a result which needs to be followed up which then turns out to be negative are defined to have a positive screening result but not having breast cancer (b). Women who are diagnosed with breast cancer between two screening rounds receive a negative test result but do have breast cancer in the end (c). All other women receive a negative screening result and do not have breast cancer (d). Table 1. Cross-table of breast cancer screening outcomes based on German patient information Breast cancer

Screening result

Positive

Negative ∑

yes

no

10

50

(a)

(b)

3

137

(c)

(d)

13

187

∑ 60

140 200

Based on this information, the breast cancer incidence among women aged between 50 and 69 years who attend mammography screening would be 6.5 per hundred within a 20-year time period. The proportion of individuals with breast cancer who have a positive test result (sensitivity) is 0.77. Out of 13 women who have breast cancer, 10 are discovered in the screening. The probability that a woman without breast cancer will receive a correct, negative result (specificity) is 0.73. Fur-

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thermore, the diagnostic quality of a test can be described by the proportion of women with a positive test result who actually have breast cancer (positive predictive value). In the example, 10 out of 60 women with a positive screening result actually suffer from breast cancer, which corresponds to 16 per cent of all women with a positive screening result in 20 years. One hundred and thirty-seven of 140 women (98 per cent) with a negative screening result do not have breast cancer (negative predictive value). If a subgroup of the population has a lower risk for breast cancer, than the proportion of cancers found in screening would be lower than among high risk groups, as the performance of the screening test is dependent not only on its sensitivity and specificity but also on the frequency of the disease (Walter, 2000:847-848). 5. Effectiveness of breast cancer screening among immigrants Estimates of the effectiveness of mammography screening that are given in information material for women vary slightly between countries and authors. However, the official information for women in Germany indicates that the personal benefit of each woman may vary. Women with a higher number of risk factors for breast cancer may benefit more from breast cancer screening than women with a lower number of such factors (Joint Federal Committee, 2010). But how are women supposed to know whether they will profit more or less from mammography screening, compared to the average? There are many risk factors for breast cancer. Several of them are well-confirmed. A family history of breast cancer in a first-degree relative, for example, increases the risk. A woman who had her first child at over 30 years of age also has an increased risk of developing a breast cancer compared to a woman who had a child before she was 20. Furthermore a menopause occurring after age 54 increases the risk of breast cancer compared to women who had their menopause under the age of 45. Additionally, a probable risk increase for current oral contraceptive use and alcohol use has been shown, while physical activity and long duration of lactation could decrease the risk for breast cancer (Hankinson and Hunter, 2002). Among immigrants, not only the uptake of breast cancer screening differs from autochthonous populations; in addition, their breast cancer risks are different. An overview of the literature shows that migrants from Southern Europe and Turkey have a lower breast cancer incidence than non-migrant women from northern Europe (Arnold et al., 2010). Arnold et al. (2011) showed that the breast cancer incidence among Turkish immigrants in the Netherlands is 70 per cent lower than among Dutch women (SIR 0.3, CI 0.2-0.3). Hemminki and colleagues (2011) confirm the overall lower breast cancer incidence for women of Turkish origin (SIR 0.45, CI 0.37-0.56) in Sweden. Spallek et al. (2009) showed an almost 30 per cent

Breast cancer screening among immigrant women

lower risk of breast cancer (RR 0.69, CI 0.59-0.81) among women of Turkish origin in the Hamburg cancer registry (Germany) compared to non-Turkish women. The difference in risk for breast cancer relative to non-Turkish women was greater in the older birth cohorts than in the younger birth cohorts. This indicates that the risk for breast cancer among Turkish migrants may converge towards the risk of the autochthonous population. As the number of cases in the study, especially in the younger birth cohorts, was low, further monitoring is needed. Zeeb and colleagues (2002) also found lower breast cancer incidence for women of Turkish origin compared to women of non-Turkish origin (PCIR 0.7, CI 0.4–1.1) in a German population-based cancer registry (Saarland). As stated above, women with a lower risk for breast cancer will not benefit in the same way as the population average. Thus migrant women from certain countries with a lower risk might not benefit in the same way as the majority population does. We will demonstrate this in a hypothetical example. Based on the literature cited above, we assume that the incidence of breast cancer among Turkish migrants would be 40 per cent lower than in the majority population (Table 2). Breast cancer incidence for these women aged between 50 and 69 years over 20 years would be 2.6 per cent. We further assume that the sensitivity (0.77) and specificity (0.73) of breast cancer screening remain the same. Table 2. Hypothetical cross-table for Turkish migrant women with 40% lower breast cancer risk than the majority population of Germany Breast cancer

Screening result

yes

no



Positive

4.0 (a)

52.6 (b)

56.6

Negative

1.2 (c)

142.2 (d)

143.4



5.2

194,8

200

As Table 2 shows, only 4 out of 56.6 women with a positive screening result actually suffer from breast cancer. The positive predictive value is 7% and thus only half as high as among women with an average breast cancer risk. The negative predictive value is 99 per cent, so 142.2 out of 143.4 women with a negative screening result do not actually have breast cancer. With these changed assumptions, the numbers in the flowchart also change (see Figure 2). Among 200 (Turkish) migrant women who participate every two years in the screening for 20 years, 56.6 women will receive results which need to be followed up. Four of these women will be diagnosed

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with breast cancer in the screening. This may underestimate the actual benefits of screening as women whose breast cancer is diagnosed earlier may need to undergo less radical treatment and thus gain quality of life, even if their survival time remains unchanged. 52.6 women will receive a negative screening test after the follow up measures but may suffer psychological stress in the meantime. Figure 2. Hypothetical flow chart for (Turkish migrant) women assumed to have a 40% lower breast cancer risk than the majority population of Germany 200 Turkish migrant women who participate in mammography screening programme every two years for over 20 years

143.4 women do not receive abnormal results in 20 years

56.6 women receive results which should be followed up on

** receive an ‘all-clear’ in the follow-up 52.6 women will notexam be diagnosed with breast cancer

** women are recommended to have a tissue sample taken ** of the suspicions turn out to be unfounded

1.2 women are also diagnosed with breast cancer in the 20 years between two screening rounds

4 women are diagnosed with breast cancer in the screening

** numbers cannot be calculated in this hypothetical example

Breast cancer screening among immigrant women

Furthermore, Turkish migrant women may have a different mean age of onset of breast cancer than the autochthonous population. The age-specific incidence varies slightly between countries. Based on age-specific cancer incidence of majority populations and other factors the EU recommended that screening should be carried out on women aged between 50 and 69 years (European Commission, 2008). In Germany, for example, the mean age of onset of breast cancer was 64 years in 2006 (Robert Koch-Institute, 2010). The age-specific breast cancer incidence increases with age from the age-group 15-34 to the age group 65-69 years (Robert Koch-Institute, 2010). Hemminki and colleagues (2011) used the Swedish Family Cancer Database to compare age at diagnosis of breast cancer. The researchers matched four Swedish controls to every Turkish woman by year of birth, age at first birth, parity and geographical area. The follow-up stopped for a case-control set when the first of the women was diagnosed with breast cancer. They found a mean age of breast cancer diagnosis for Turkish immigrants of 46.9 years compared to 52.4 years among Swedish controls (mean difference in years -5.5, CI -8.1—2.9). This could indicate that Turkish immigrants might have a lower mean age of diagnosis than native populations, resulting in a lower benefit from breast cancer screening programmes focusing on older age groups. Moreover, it is possible that breast cancer aetiology is different among migrants compared to autochthonous populations. In breast cancer screening programmes, ductal carcinoma in situ can easily be discovered. Only one out of three women with this condition will develop a dangerous tumour (Joint Federal Committee, 2010). Before the implementation of the population-based screening only 7 per cent of all breast cancers were in-situ carcinoma (2000-2005). Between 2005 and 2007, almost 20 per cent of all tumours discovered in the German breast cancer screening programme were in-situ carcinoma (Kooperationsgemeinschaft Mammographie, 2009). In-situ carcinomas constitute an important part of the tumours diagnosed through cancer screening; only a minority of these will progress into cancer, but all contribute to the computation of parameters for screening benefits. So far, there are no studies comparing types of cancers found in breast cancer screening programmes among immigrants. It is important to know more about the biological types of cancers found in screening among immigrants compared to autochthonous populations. If a higher proportion of in-situ carcinomas were found among immigrant women, this would reduce the benefits of the screening programme because of a higher proportion of women who will undergo unnecessary diagnosis and treatment. However, if screening were to identify a higher proportion of invasive tumours among migrants than in the autochthonous population, then screening might have even more benefits for immigrant women. Up to now there have been no evaluations of breast cancer screening programmes among migrant women with mortality as the endpoint. A reduction of mortality

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can only be measured many years after the implementation of a programme; in addition, only randomised trials will lead to unbiased findings, and randomizing women to screening or non-screening will pose ethical problems. For this reason, the effectiveness of screening is monitored by several process indicators. Visser and colleagues show differences in these process indicators among Turkish immigrants compared to Dutch women (Visser et al., 2005). The number of referrals per 1000 screened women was only half as high for Turkish immigrants (4.0) as for Dutch women (8.8). The number of breast cancers in referred women per 1000 screened women was only 1.8 among Turkish immigrants compared to 4.0 among Dutch women. The positive predictive value (number of actual breast cancers per 100 referred women with positive screening results) was 33 per cent among Turkish immigrant women compared to 45 per cent among Dutch women. There were no differences between the interval carcinoma rates (Visser et al., 2005). The results of this study confirm that screening in a low risk population will result in a lower positive predictive value of the test. They furthermore indicate that the screening interval of two years in the Netherlands for Turkish women is not too long as there are no increased rates of interval carcinoma. But several open questions remain. It is not clear whether the lower number of referrals among Turkish women can be explained by a lower breast cancer incidence. An alternative reason for the lower number of referrals could be differences in cancer types or breast density of migrant women that make the detection of small carcinomas more difficult. Another explanation could be a worse process quality due to discrimination of migrant women or poorer communication, etc. 6. Implications for research and practice Migrant women from southern countries have a lower risk for breast cancer than women from the majority population of north-west European countries. As breast cancer risk influences the effectiveness of breast cancer screening, migrant women may derive lower benefits from breast cancer screening programmes than the majority population. As a consequence, the balance between benefits and risks of screening may be less favourable – even, perhaps, to such a degree that nonparticipation might become a relevant option. Migrant women need to be given information about the benefits and disadvantages in order to be able to make an informed decision on whether or not to participate in the breast cancer screening programme. Opponents of this view might argue that breast cancer screening was implemented as a population-based programme whose recommendations and organisation is based on average figures. Possible risk differences among sub-groups of the population cannot be taken into account, given that a population approach (as opposed to a high-risk approach) was agreed upon at the onset of the screening

Breast cancer screening among immigrant women

programme. On this view, the fact that differences in risk factors exist should not lead to calls for establishing dedicated prevention and screening programmes for migrants. Such programmes could be perceived as discriminating as they would lead to the separation of minority groups in health care. Furthermore, specialised programmes would not be practically feasible as screening organisations would have to establish parallel infrastructure such as an invitation system or screening clinics for every subgroup that is targeted. Nonetheless, differences in breast cancer risk do have an impact on a central principle of breast cancer screening programmes. The European Guidelines for breast screening communication argue that …screening usually involves a healthy and asymptomatic population which requires adequate information presented in an appropriate and unbiased manner in order to allow a fully informed choice as to whether to attend. Information provided must be balanced, honest, adequate, truthful, evidence-based, accessible, respectful and tailored to individual needs where possible.2

This means that all women must be given the option to decide on an informed basis, knowing benefits as well as risks of the screening programme. This implies that a possible decrease in participation in screening through tailored information needs to be accepted – even if this would negatively affect indicators of programme quality such as the participation rate, which is set to a minimum of 70 per cent (European Commission, 2006). This has consequences for health services as well as for health systems research and social epidemiology: Lower participation rates among migrants do not necessarily have to be interpreted in terms of inequity, provided that migrant women’s decision not to participate is based on informed choice. To allow a fully informed choice, migrant women need additional information about breast cancer screening, taking their specific risk profiles into consideration. It is not sufficient to merely translate the existing information material into different languages. Nor is it enough to take into account possible cultural differences in information needs about screening, for example by adding the information for Muslim women that a female doctor or assistant will perform the examination. So far there are no studies investigating factors explaining the differences in screening uptake between migrant women and autochthonous populations. Such studies could help to empower migrant women to take informed decisions on whether or not to participate in breast cancer screening programmes, thus promoting the freedom of individual choice. This will also be a step towards a balanced, risk-based diversity management in screening programmes. 2 European Commission (2006:8).

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References Arnold, M., Aarts, M.J., Siesling, S., van der A, M., Visser, O. & Coebergh, J.W. (2011). Breast and stomach cancer incidence and survival in migrants in the Netherlands, 1996-2006. European Journal of Cancer Prevention: The Official Journal of the European Cancer Prevention Organisation (ECP), 20(3), 150–156. Arnold, M., Razum, O. & Coebergh, J.-W. (2010). Cancer risk diversity in non-western migrants to Europe: An overview of the literature. European Journal of Cancer, 46(14), 2647–2659. Autier, P., Boniol, M., Gavin, A. & Vatten, L.J. (2011). Breast cancer mortality in neighbouring European countries with different levels of screening but similar access to treatment: trend analysis of WHO mortality database. BMJ Clinical Research Edition, 343, d4411. Berens, E.M. (2010) Teilnahme am Mammographiescreening-Programm und dessen Einflussfaktoren bei Frauen mit türkischem Migrationshintergrund. [MSc thesis, Bielefeld: Bielefeld University, School of Public Health.] Bulliard, J.L., de Lantsheer, J.P. & Levi, F. (2004). Profile of women not attending in the Swiss Mammography Screening Pilot. Breast, 13(4), 284–289. European Commission (2006). European Guidelines for Quality Assurance in Breast Cancer Screening and Diagnosis. Fourth edition. Luxembourg: European Communities. http://screening.iarc.fr/doc/ND7306954ENC_002.pdf European Commission (2008). Cancer screening in the European Union: Report on the Implementation of the Council Recommendation on cancer screening, Luxembourg: European Communities. http://screening.iarc.fr/doc/cancer_screening.pdf European Commission (2011) Population and Social Conditions. Eurostat, statistics in focus, 34/2011. http://epp.eurostat.ec.europa.eu/cache/ITY_OFFPUB/KS-SF-11-034/ EN/KS-SF-11-034-EN.PDF European Union (2011). Migrants in Europe (2011) – a Statistical Portrait of the First and Second Generation. Luxembourg: Publications Office of the European Union. http://epp.eurostat.ec.europa.eu/cache/ITY_OFFPUB/KS-31-10-539/EN/KS-3110-539-EN.PDF Fontana, M. and Bischoff, A. (2008). Uptake of breast cancer screening measures among immigrant and Swiss women in Switzerland. Swiss Medical Weekly, 138(4950): 752–758. Gøtzsche, PC., Hartling, O.J., Nielsen, M., Brodersen, J. (2008). Screening for breast cancer with mammography. [leaflet] http://www.cochrane.dk/screening/mammography-leaflet.pdf Hankinson, S. and Hunter, D. (2002). Breast Cancer. In: Adami, H.O., Hunter, D. & Trichopoulos, D. (Eds.) Textbook of Cancer Epidemiology (pp. 301-339). New York: Oxford University Press. Hartman, E., van den Muijsenbergh, M.E.T.C. & Haneveld, R.W. (2009). Breast cancer screening participation among Turks and Moroccans in the Netherlands: exploring

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reasons for nonattendance. European Journal of Cancer Prevention, 18(5), 349–353. Hemminki, K., Mousavi, S.M., Sundquist, J. & Brandt, A. (2011). Does the breast cancer age at diagnosis differ by ethnicity? A study on immigrants to Sweden. The Oncologist, 16(2), 146–154. Joint Federal Committee (2010). Information about the Mammography Screening. A programme for the early detection of breast cancer in women between the ages of 50 and 69. [leaflet] http://www.mammo-programm.de/cms_upload/datenpool/ bmerkblatt_englisch_web.pdf Kooperationsgemeinschaft Mammographie (2009) Evaluationsbericht 2005-2007 – Ergebnisse des Mammographie-Screening-Programms in Deutschland. http://www. mammo-programm.de/cms_upload/datenpool/evaluationsbericht05-07_web.pdf Lagerlund, M., Maxwell, A.E., Bastani, R., Thurfjell, E., Ekbom, A. & Lambe, M. (2002). Sociodemographic predictors of non-attendance at invitational mammography screening – a population-based register study (Sweden). Cancer Causes Control, 13(1), 73–82. Lampert, T. (2005). Schichtspezifische Unterschiede im Gesundheitszustand und Gesundheitsverhalten. Blaue Reihe. 2005-04. Berlin: Berliner Zentrum für Public Health. http://bsph.charite.de/fileadmin/user_upload/microsites/m_cc01/bsph/Blaue_Reihe/2005-04_ger.pdf Moser, K., Patnick, J. & Beral, V. (2009). Inequalities in reported use of breast and cervical screening in Great Britain: analysis of cross sectional survey data. BMJ Clinical Research Edition, 338, b2025. Naß-Griegoleit, I., Schulz- -Zehden,B., Klusendick, M. et al. (2009). Studie belegt hohe Akzeptanz des Mammographie-Screenings bei Frauen. Frauenarzt, 50, 494-501. Puddu, M., Demarest, S. & Tafforeau, J. (2009). Does a national screening programme reduce socioeconomic inequalities in mammography use? International Journal of Public Health, 54(2), 61–68. Robert Koch-Institute (2010). Cancer in Germany 2005/2006. Incidence and Trends. Seventh edition, Berlin: Robert Koch Institute and Association of Population-based Cancer Registries in Germany. Spallek, J., Arnold, M., Hentschel, S. & Razum, O. (2009). Cancer incidence rate ratios of Turkish immigrants in Hamburg, Germany: A registry based study. Cancer Epidemiology, 33(6), 413–418. Vermeer, B. & van den Muijsenbergh, M.E.T.C. (2010). The attendance of migrant women at the national breast cancer screening in the Netherlands 1997-2008. European Journal of Cancer Prevention, 19(3), 195–198. Visser, O, van Peppen, A.M., Öry, F.G. & van Leeuwen, F.E. (2005). Results of breast cancer screening in first generation migrants in Northwest Netherlands. European Journal of Cancer Prevention, 14(3), 251–255. Walter, S.D. (2000). Sensitivity. In: Gail, M.H. & Benichou, J. (Eds.) Encyclopedia of Epidemiologic Methods (pp. 847-848). Chichester, New York, Weinheim, Brisbane, Singapore and Toronto: John Wiley and Sons, Ltd.

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About the authors and editors

About the authors and editors

Fernando Garcia Benavides Senior Professor and Director, Centre for Research in Occupational Health, Universitat Pompeu Fabra, Barcelona, Spain [email protected] Eva-Maria Berens Researcher, Department of Epidemiology & International Public Health, Faculty of Health Sciences, Bielefeld University, Germany [email protected] Raj Bhopal Bruce and John Usher Professor of Public Health, Edinburgh Ethnicity and Health Research Group, Centre for Population Health Sciences, University of Edinburgh, Scotland [email protected] Kamaldeep Bhui Professor of Cultural Psychiatry & Epidemiology, Wolfson Institute of Preventive Medicine, Barts and The London School of Medicine and Dentistry, Queen Mary, University of London, England; Consultant Psychiatrist, East London Foundation Trust [email protected] Theda Borde Professor and Rector, Alice Salomon Hochschule Berlin, Germany [email protected] Elżbieta Czapka Lecturer, Institute of Sociology, Faculty of Philosophy and Sociology, Maria CurieSkłodowska University, Lublin, Poland [email protected] Marie Dauvrin Researcher, Institute of Health and Society, Université catholique de Louvain, Louvain-la-Neuve, Belgium [email protected]

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Emma Davidson Research Fellow, Edinburgh Ethnicity and Health Research Group, Centre for Population Health Sciences, University of Edinburgh, Scotland [email protected] Matthias David Chief Physician, Clinic for Gynaecology and Obstetrics, Charité – Universitätsmedizin Berlin, Germany [email protected] Ilse Derluyn Coordinator, Centre for Children in Vulnerable Situations, Department of Orthopedagogics, Ghent University, Belgium [email protected] Ana Alexandre Fernandes Full Professor, School of Social and Political Sciences, Technical University of Lisbon; Associate Professor, Department of Public Health, Faculty of Medical Sciences, New University of Lisbon, Portugal [email protected] Manfred Green Professor of Epidemiology and Head, School of Public Health, University of Haifa, Israel [email protected] Anders Hjern Researcher, Centre for Health Equity Studies, Karolinska Institutet / Stockholm University, Stockholm, Sweden; Adjunct Professor of Paediatric Epidemiology, Nordic School of Public Health, Gothenburg, Sweden. [email protected] Dagny Holm Research Assistant, Department of Psychology & Educational Studies, Roskilde University, Denmark [email protected] David Ingleby Emeritus Professor of Intercultural Psychology, Faculty of Social and Behavioural Sciences, Utrecht University; Researcher, Centre for Social Science and Global Health, University of Amsterdam, The Netherlands [email protected]

About the authors and editors

Fuad A. Iraqi Professor, Department of Clinical Microbiology and Immunology, Sackler Faculty of Medicine, Tel Aviv, Israel [email protected] Mark Johnson Professor of Diversity in Health and Social Care and Director, Mary Seacole Research Centre, De Montfort University, Leicester, UK [email protected] Charis Kaite Postgraduate Associate, School of Health Sciences, Cyprus University of Technology, Limassol, Cyprus [email protected] Daniela Kallayova Head of Department of Public Health and Vice-Dean for International Affairs, Faculty of Health Care and Social Work, Trnava University, Slovakia [email protected] Ursula Karl-Trummer Head of the Center for Health and Migration, Vienna; Senior Lecturer, Faculty of Social Science, University of Vienna, Austria [email protected] Christiana Kouta Assistant Professor, School of Health Sciences, Cyprus University of Technology, Limassol, Cyprus [email protected] Allan Krasnik Director, Danish Research Centre for Migration, Ethnicity and Health (MESU), Department of Public Health, University of Copenhagen; Professor, Section for Health Services Research, University of Copenhagen, Denmark [email protected]   Katia Levecque Post-doctoral Fellow, Department of Sociology, Ghent University, Ghent, Belgium [email protected]

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Jing Jing Liu Research Associate, Edinburgh Ethnicity and Health Research Group, Centre for Population Health Sciences, University of Edinburgh, Scotland [email protected] Vincent Lorant Professor of Medical Sociology, Institute of Health and Society, Université catholique de Louvain, Louvain-la-Neuve, Belgium [email protected] Marek Majdan Assistant Professor, Faculty of Health Care and Social Work, Trnava University, Slovakia [email protected] Gina Netto Senior Lecturer, School of the Built Environment, Heriot-Watt University, Edinburgh, Scotland [email protected] Beatriz Padilla Researcher, Centre for Research and Studies in Sociology (CIES/ISCTE-IUL), University Institute of Lisbon, Portugal [email protected] Oliver Razum Head of the Department of Epidemiology & International Public Health; Dean of Faculty of Health Sciences, Bielefeld University, Germany [email protected] Anna Reeske Research Assistant, Department of Prevention and Evaluation, Institute for Epidemiology and Prevention Research (BIPS), Bremen, Germany [email protected] Elena Ronda Researcher, Centre for Research in Occupational Health, Universitat Pompeu Fabra, Barcelona; Professor of Preventive Medicine and Public Health at the University of Alicante, Spain [email protected]

About the authors and editors

Ronan Van Rossem Associate Research Professor, Department of Sociology, Ghent University, Ghent, Belgium [email protected] Warsan Osman Saleh Researcher, Wolfson Institute of Preventive Medicine, Barts and The London School of Medicine and Dentistry, Queen Mary, University of London, England; Psychological Therapist, Tavistock Clinic, London [email protected] Sascha Sardadvar Assistant Professor, Institute for Economic Geography and GIScience, Vienna University of Economics and Business, Austria [email protected] Erika Sievers Senior Consultant, Social Paediatrics and Child Public Health, Academy of Public Health, Düsseldorf, Germany [email protected] Aziz Sheikh Professor of Primary Care Research and Development, Centre for Population Health Sciences, University of Edinburgh, Scotland [email protected] Rashmi Singla Associate Professor, Department of Psychology and Educational Studies, Roskilde University; Director, Transcultural Therapeutic Team for Ethnic Minority Youth and their Families (TTT), Copenhagen, Denmark [email protected] Jacob Spallek Professor of Social Epidemiology, Department of Epidemiology & International Public Health, Faculty of Health Sciences, Bielefeld University, Germany [email protected] Jalal Tarabeia Researcher, Division of Epidemiology, Tel-Aviv Sourasky Medical Center, Israel [email protected]

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Marianne Vervliet Researcher, Department of Orthopedagogics, Ghent University, Belgium [email protected] Nasir Warfa Senior Lecturer, Wolfson Institute of Preventive Medicine, Barts and The London School of Medicine and Dentistry, Queen Mary, University of London, England [email protected] Martin White Professor of Public Health, Newcastle University, Newcastle upon Tyne, UK [email protected]