World Health Organization, and the Harvard School of Public Health were pub- lished in The World ...... Case Studies from Fiji and Hong Kong by Anne E. Becker and Dominic Lee. The final chapter ...... with physicians from the county or street hospitals to discuss the status of patients ...... Henderson, P. L. (1995). Donor and ...
World Mental Health Casebook
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World Mental Health Casebook Social and Mental Health Programs in Low-Income Countries
Edited by
Alex Cohen Arthur Kleinman Harvard Medical School Boston, Massachusetts
and
Benedetto Saraceno World Health Organization Geneva, Switzerland
KLUWER ACADEMIC PUBLISHERS NEW YORK, BOSTON, DORDRECHT, LONDON, MOSCOW
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Contributors
Sara Acland
Seven Counties Services, Louisville, KY
Julio Acha Albújar Socios En Salud, Lima, Peru Anne Becker Department of Social Medicine, Harvard Medical School, Boston, MA Deborah Billings Ipas and Department of Maternal and Child Health School of Public Health University of North Carolina, Chapel Hill, North Carolina Doris Chang Department of Social Medicine, Harvard Medical School, Boston, MA Alex Cohen MA
Department of Social Medicine, Harvard Medical School, Boston,
Dalia Guerra Echevarria Socios En Salud, Lima, Peru Arthur Kleinman Department of Social Medicine, Harvard Medical School, Boston, MA, and Department of Anthropology, Harvard University, Cambridge, MA Joan Kleinman Department of Anthropology, Harvard University, Cambridge, MA Dominic T. S. Lee Department of Psychiatry, The Chinese University of Hong Kong, Hong Kong, China v
vi
Contributors
Inda Sáenz Department of Psychology, National Autonomous University of Mexico (UNAM) Mexico City, Mexico Benedetto Saraceno Department of Mental Health and Substance Dependence, World Health Organization, Geneva, Switzerland Annika Sweetland School of Social Welfare, University of California, Berkeley, and Socios En Salud, Lima, Peru Xu Yifeng Scientific Research and Medical Education Office, Shanghai Mental Health Center, Shanghai, China
Preface
In less than a dozen years, the field of international mental health has been transformed from a sub-discipline that attracted only a handful of anthropologists, psychiatrists, and psychologists into a field that has now become a major concern in international public health. In 1991, the United Nations General Assembly passed a resolution, The Protection of Persons with Mental Illness and the Improvement of Mental Health Care. Although this document did not have legal status and did not bind nations to adhere to its tenets, it placed the issue of human rights for persons with mental disorders in the international arena. Two years later, the results of a collaborative study by the World Bank, World Health Organization, and the Harvard School of Public Health were published in The World Development Report 1993: Investing in Health. Prior to this, the importance of psychiatric morbidity and functional disability had been severely underestimated by statistics that primarily reflected mortality. By combining the disease burden due to both morbidity and mortality into a single measurement—Disability Adjusted Life Years (DALYs)—the study demonstrated that mental health and behavior-related problems comprised a far greater challenge to public health (in rich and poor countries alike) than had been supposed previously. This new evidence motivated the Department of Social Medicine, Harvard Medical School to inaugurate a research project that closely examined the burden of mental illnesses in the developing world. The result was the book, World Mental Health: Problems and Priorities in Low-Income Countries (1995) which described the nature of neuropsychiatric conditions and the burden they impose on the poor peoples of the world, delineated the biological, social, political, cultural, and economic forces that contribute to those disorders, and offered recommendations for research, training of mental health personnel, and the provision of vii
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services, and policy. Officially launched at the United Nations in May 1995, and at regional meetings in New Delhi (India), Montreal (Canada), Cape Town (South Africa), San Cristobal de las Casas (Chiapas, Mexico), Arusha (Tanzania), and Bologna (Italy), the report has played a central role in heightening the awareness of the international community to the mental health crisis in low-incomes countries. In the following year, WHO established Nations for Mental Health, a program that supported demonstration projects for under-served populations in such countries as Mongolia, Sri Lanka, Argentina, Zanzibar, and the Marshall Islands. And, within the next two years, the World Bank—the world’s largest external funder of health projects—created a position within its Health, Nutrition and Population Sector for a specialist to stimulate and review proposals for mental health projects. The year 2001 was a high point for international mental health efforts. With strong support from Director General Gro Harlem Bruntland, WHO devoted both the World Health Assembly and The World Health Report 2001 to mental health. Additionally, WHO has formulated the Global Action Program, an ambitious fiveyear plan to strengthen the ability of countries to reduce the stigma and burden of mental disorders through advocacy, research, and the improvement of policies and services. The World Mental Health Casebook is an outgrowth of the earlier work at Harvard and is a companion to the widening efforts to address the burden of mental disorders in low-income countries. We hope that the program narratives contained here will stimulate greater interest in the documentation and evaluation of social and mental health programs in low-income countries because, in the absence of careful and honest examinations of what has been done, it will be difficult to avoid the mistakes of the past and to build toward ever more effective and accessible mental health services for populations that are in need.
ACKNOWLEDGMENTS The editors would like to thank the Carnegie Corporation of New York, the World Health Organization, and the Michael Crichton Fund of the Department of Social Medicine, Harvard Medical School for their support during the preparation of this volume.
Contents
Introduction
1
Chapter 1. Rehabilitation of Schizophrenia Patients in China: The Shanghai Model
27
Doris F. Chang, Xu Yifeng, Arthur Kleinman, and Joan Kleinman
Chapter 2. Enhancing Adherence: The Role of Group Psychotherapy in the Treatment of MDR-TB in Urban Peru
51
Annika Sweetland, Julio Acha Albújar, and Dalia Guerra Echevarria
Chapter 3. Mental Health Promoter Training with Guatemalan Refugee Women in Mexico City and the Camps of Southern Mexico
81
Deborah L. Billings and Inda Sáenz
Chapter 4. Mental Health Services in Primary Care: The Case of Nepal
121
Sarah Acland
Chapter 5. “Our Lives Were Covered in Darkness”: The Work of the National Literacy Mission in Northern India
153
Alex Cohen
Chapter 6. The Risk of Freedom: Mental Health Services in Trieste Alex Cohen and Benedetto Saraceno
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Chapter 7. Indigenous Models for Attenuation of Postpartum Depression: Case Studies from Fiji and Hong Kong
Contents
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Anne E. Becker and Dominic T. S. Lee
About the Contributors
237
Index
243
Introduction ALEX COHEN, ARTHUR KLEINMAN, AND BENEDETTO SARACENO
In October 1974, the World Health Organization convened an Expert Committee to consider the question of how best to organize mental health services in the developing world (WHO, 1975). Thomas Lambo, the Nigerian psychiatrist who founded Aro Village (Lambo, 1966) and who was then the Deputy DirectorGeneral of WHO, opened the meeting by commenting on the availability of effective treatments for a wide range of psychiatric disorders but their limited application in poor countries. The situation was made worse, he noted, because even when public resources were devoted to mental health, the largely institutionally-based interventions were often inappropriate or harmful. More than a quarter of a century later, little has changed: tremendous need, but scarce effective care remains the norm. Indeed, for a number of reasons detailed below, one could say the disparities are relatively worse today. First, the development of the DALYs (Disability Adjusted Life Years)—which combined morbidity and mortality into a single measure (Murray & Lopez, 1996)—provided substantial evidence of the huge burden imposed by neuropsychiatric disorders in both wealthy and poor countries alike. The DALYs demonstrated that, as of 2000, 12.3% of the global burden of disease was the result of neuropsychiatric disorders. Three conditions—unipolar depressive disorders, alcohol use disorders, and self-inflicted injuries (which are often associated with mental illness)—were among the 20 leading causes of the global burden of disease. Among persons 15–44 years, a particularly active and productive age group, six of the leading causes were neuropsychiatric conditions; depressive disorders alone comprised 8.6% of the burden of disease for this age group. Even in those countries that continue to experience high rates of morbidity and mortality—due to infectious diseases, as well as maternal, perinatal, and nutritional conditions—neuropsychiatric 1
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disorders comprised 8% of the total burden of disease. If one considers only the disability component of the global burden, mental disorders accounted for 31% of all years lived with disability, and depression was the leading cause, accounting for almost 12% of the total (WHO, 2001c). A recent report from the Institute of Medicine (2001) in the United States provides other evidence of the burden of neuropsychiatric disorders in the developing world. For example, estimates of the prevalence of developmental disorders in low-income countries are usually above 5 per 1,000 persons—and range up to a high of 22 per 1,000 in Lahore, Pakistan—while the rates in the developed world are in the range of 3–6 per 1,000. The burden of epilepsy in poor countries is increased because of the huge gap between the number of people with the disorder and the percentage (as few as 10% of persons in some countries) who receive treatment. Depression, which is associated with high rates of suicide, premature mortality from physical illnesses, and extensive functional disability, goes largely undiagnosed and untreated. Alcohol-related problems have been shown to contribute a significant proportion of the burden of disease: alcohol use accounts for almost 10% of the burden of disease in Latin America (Alarcón & AguilarGaxiola, 2000) and alcohol-related problems have been found to be common among primary care patients in Africa (Abiodun, 1991; Hollifield, Katon, Spain & Pule, 1990; Nielsen, Resnick & Acuda, 1989; Otieno, Owola & Odour, 1979; Saunders, Aasland, Amundsen & Grant, 1993). Second, new generations of psychopharmacological agents now provide a wider armamentarium for the treatment of mental disorders (Lieberman, Golden, Stroup & McEvoy, 2000). The new atypical antipsychotics are safer and do not produce extrapyramidal side-effects which makes their use appropriate for other conditions (e.g., dementia with psychosis and psychotic mood disorders). Much the same can be said for the treatment of depression: the selective serotonin reuptake inhibitors (SSRIs) are less toxic and better tolerated than the older tricyclic antidepressants and monoamine oxidase inhibitors. Perhaps what is most important about the latest generation of medications is that, unlike their forerunners, which were discovered through serendipity, new agents are now increasingly discovered by hypothesis-driven neuroscience investigations of specific pharmacological actions (p. 1258). This holds out the hope of the discovery of more effective interventions in the future. Third, advances in services research have produced more precise strategies by which to address the burden of mental disorders. The U.S. Agency for Health Care Policy and Research (AHCPR, 1993a; AHCPR, 1993b; Mulrow et al., 1999) has developed guidelines for the treatment (both psychopharmacological and psychotherapeutic) of depression in primary care settings. A recent review of the literature concludes, High-quality care for medical outpatients with depression is both achievable and affordable. Primary care physicians can provide the essential elements of
Introduction
3
effective care for depression, including education of patients, prescriptions of medications, systematic follow-up, and appropriate use of specialists and resources. This comprehensive approach will improve patients’ physical and psychological well-being (Whooley & Simon, 2000, p. 1948).
Even though these guidelines have not been easy to put into practice (Schulberg et al., 1995; Schulberg et al., 1997; Schulberg, Katon, Simon & Rush, 1998), services research has identified strategies that can improve the quality of treatment for depression among patients in primary care (Katon et al., 1995; Lin et al., 1997; Lin, 1999; Wells et al., 2000; Schoenbaum et al., 2001). Services research has also demonstrated that a combination of biomedical, psychological (cognitive-behavioral therapies), and psychosocial strategies (family interventions, skills training, and stress management, as well as provision of supportive housing, employment opportunities, and community involvement) enhance the effectiveness of treatments for schizophrenia (Brenner & Pfammatter, 2000; Falloon, Held, Roncone, Coverdale & Laidlaw, 1998; Marder, 2000; Mojtabai, Nicholson & Carpenter, 1998; Bertolote & Saraceno, 1996). Fourth, beginning in the 1950s psychiatric care has evolved, at least in North America, Western Europe, and Australia, from hospital-based to community-based systems of care (Thornicroft & Tansella, 1999; Grob, 1991). This has lead to a dramatic decrease in the number of long-stay patients in mental hospitals and an increase in the number of people who receive treatment and care in the community; services research has demonstrated the effectiveness of community care for this population (Thornicroft, Wykes, Holloway & Johnson, 1998). This shift has brought about the recognition that social welfare policies (e.g., the provision of income supports and housing) are essential to the success of mental health interventions aimed at persons with chronic and severe mental illness (Goldman, 1998)—a strategy that Franco Basaglia and coworkers put into practice in Trieste more than 25 years ago (see Chapter 6). Yet, the development and success of community-based services in the wealthier nations makes their absence all the more noticeable and disturbing in poorer nations—where ineffective and often deleterious systems of institutional-based services continue to consume a large proportion of the scant funds that are available for mental health. Fifth, in recent decades increased attention to human rights, stigma and discrimination, and consumer and family movements (WHO, 2001c; DHHS, 1999), has, we believe, brought about better and more empathic care. The United Nations General Assembly Resolution, The Protection of Persons with Mental Illness and the Improvement of Mental Health Care (United Nations, 1991), as well as the Declarations of Hawaii and Madrid (Helmchen & Okasha, 2000) set forth principles that establish basic rights for persons suffering from mental illnesses, among them the right to the best available mental health care, protection from exploitation and discrimination, the right to be treated in the least restrictive environment possible, and the right of confidentiality. In view of past abuses
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(Bloch, 1997; Birley, 2000; Harding, 2000), these documents have served the important task of raising awareness about the need to be vigilant on behalf of persons with mental disorders. Unfortunately, there has been a distinct lack of engagement with these problems at a national level. Many countries do not have relevant policies, programs, or legislation. Mental health budgets are woefully low, less than 1% of total health expenditures (WHO, 2001a). For these reasons, it is not surprising that human rights abuses in psychiatric facilities in the developing world are wide-spread (NHRC, 1999; Murthy, 2000; Levav & Gonzalez Uzcategui, 2000; Alem, 2000). The disregard of mental health in the public health arena is, to a great extent, a product of stigma that fosters the mistaken belief that mental disorders are not real and disabling conditions, and that mental health efforts neither require nor deserve resources equivalent to those of other health concerns (Link & Phelan, 2001; DHHS, 1999). Stigma discourages people from seeking care. Research by R. Raguram and colleagues (Raguram, Weiss, Channabasavanna & Devins, 1996) demonstrates that stigma compels persons to report somatic rather than psychological symptoms to physicians, a finding that is supported by research from many regions of the world (Cohen, 2001). Stigma shapes the course and outcome of mental disorders by restricting access to treatment and services, decreasing the resources for research, and (because of poverty and discrimination) by forcing persons with severe mental illness to live in unhealthy environments (Link & Phelan, 2001). Indeed, stigma changes the moral experience of patients and families by conferring upon them new social statuses and identities through beliefs about the association of mental illness with pollution, deficit, and contagion. Finally, the stigma associated with mental illness discourages medical students in the developing world from pursuing careers in psychiatry and lowers the prestige of the allied mental health fields: psychiatric nursing, psychology, and social work. This lack of highly-qualified personnel lowers the overall quality of care in mental health facilities. Since the 1970s, the consumer and family movements have played important roles in the evolution of mental health services in North America, Australia, and Western Europe (WHO, 2001c; DHHS, 1999). Consumer advocacy groups have taken on such issues as involuntary treatment, the ethics of research, and access to services. Family groups, such as the National Alliance for the Mentally Ill in the United States, advocate for improved services for persons with severe and chronic mental illness, run campaigns to reduce stigma, and lobby for increased government spending on mental health. While these movements are not wellestablished in low-income countries, their potential is suggested by the case history of the Shanghai Model in Chapter 1. Sixth, in recent decades the structural adjustment economic policies of the International Monetary Fund and the World Bank have resulted in decreased funding for public health in general (Benson, 2001; Jowett, 1999; Kolko, 1999),
Introduction
5
leaving low-income countries less capable of addressing mental health problems than ever before. In sum, it would appear that the gap between an increased awareness of the burden of mental disorders and the greater ability to treat them, on the one hand, and the scarcity of effective mental health services, on the other, is even greater now in low-income countries than in 1974 when Lambo spoke to the Expert Committee. This raises many questions. Why, despite the evidence and the availability of interventions, have international agencies and Ministries of Health in low-income countries not made the development of mental health services a priority? Why have other national ministries, whose mandates include issues that are relevant to mental health, not been actively involved? Ministries of Labor should be interested in the emotional effects of unemployment and rapid socioeconomic transformations. Ministries of Education should be actively involved in addressing the problems of children and adolescents, e.g., learning disorders, substance abuse, suicide, and malnutrition. Ministries of Finance would do well to examine the economic consequences of disability and decreased productivity due to mental disorders. Furthermore, why is there a relative paucity of funding devoted to these concerns from other sectors (e.g., private foundations in wealthy countries)? One could name a host of reasons. Stigma and the mistaken belief that mental disorders are not “real,” cannot be treated effectively, and, therefore, do not constitute a priority for public health discourages concern and funding. There are few trained personnel to run and evaluate programs. And the low status of psychiatry relative to other medical professions keeps it from attracting wider attention. But perhaps the most serious barrier to establishing widely available and effective mental health services in low-income countries has been the failure to develop policies and strategies that emerge from local realities and clinical experience. For example, in its report, the WHO Expert Committee offered the following advice: If basic mental health care is to be brought within reach of the mass of the population, this will have to be done by nonspecialized health workers—at all levels, from the primary health worker to the nurse or doctor—working in collaboration with, and supported by, more specialized personnel (WHO, 1975, p. 33). This was, and continues to be, a reasonable conclusion. The extent of the burden of mental disorders, in combination with a lack of resources and personnel, makes it obvious that the specialized service models found in wealthy countries are not applicable in the developing world. For the past quarter century, most efforts to expand mental health services in the developing world have pursued the strategy suggested by the Expert Committee. While this continues to be considered the most feasible method (Institute of Medicine, 2001), a careful examination of the available evidence reveals that the effectiveness of mental health services in primary
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care settings in the poorer nations of the world has yet to be thoroughly documented or demonstrated (Cohen, 2001). Consequently, governments, ministries, international and local organizations, and individuals who wish to develop mental health services in low-income countries have little practical guidance about how to proceed. Questions concerning the best methods of training health workers and general physicians, the effectiveness of specific interventions for specific conditions, or the extent to which mental health professionals are needed to supervise treatment by primary care health workers have not been answered in any great detail. We believe that no area of mental health research is more important than the examination of questions relevant to the development of policy and services. While work in the neurosciences, clinical research, and epidemiology will, no doubt, continue to produce increasingly better understandings of the biological, psychological, and social processes that contribute to mental disorders, it will have little significance for the tens of millions of people in the developing world who suffer from treatable disorders unless this knowledge is translated into national and international policies that result in effective and widely available interventions and services. To that end, WHO has recently supported several initiatives. The process began with a high-level consultative meeting in April 1999 for setting the WHO agenda for mental health (WHO, 1999). In November 1999 in Beijing, WHO and the Chinese Ministry of Health held China’s first nationwide meeting to raise awareness about the importance of depression, suicide, and schizophrenia; two more national meetings were held subsequently. At the global level, WHO devoted World Health Day and The World Health Report 2001 (WHO, 2001c) to mental health. While the former was an opportunity for high- level advocacy, the latter provided a state-of-the-art review for policy makers. In May 2001, the World Health Assembly convened Round Tables on mental health which were attended by Ministers of Health from around the world (WHO, 2001b). WHO has undertaken Project ATLAS to collect, compile and present data on mental health resources. Basic information from almost all countries of the world has been collected and will be useful for program planning, especially in low-income countries (WHO, 200la). Finally, WHO has supported many demonstration projects. These include projects on policy (Belize, Mongolia, Mozambique and Palestine), family management of schizophrenia (India), suicide prevention (Sri Lanka and the Marshall Islands), and treatment of epilepsy (China), among others. Most ambitious of all is the Mental Health Global Action Program, a five-year effort that, through partnerships at the international, regional, and local levels, seeks to address the stigma and burden of mental disorders by focusing on four strategic areas: the integration of policies and services, comprehensive information gathering, advocacy against stigma and discrimination, and the enhancement of research capacities in low-income countries. All of these initiatives have contributed to putting mental health firmly on the international public health agenda
Introduction
7
and will ultimately have the effect of making care available to a larger proportion of the world’s people. In addition to the activities at WHO, a number of important developments in the past few years have served to make mental health issues more prominent. In 1999, the United States Department of Health and Human Services issued Mental Health: A Report of the Surgeon General (DHHS, 1999). This was followed by Mental Health: Culture, Race and Ethnicity (DHHS, 2001). Together these reports presented convincing arguments that mental disorders posed a significant public health problem that was, to a very large extent, not being addressed effectively even in one of the wealthiest countries in the world. Prompted by the Global Burden of Disease Study (Murray & Lopez, 1996), the World Bank has become more interested in mental health and has appointed an advisor on the topic (H. Whiteford, personal communication). The conference, Placing Mental Health on the International Health Agenda, which was held at Harvard Medical School in April 2000, prompted the National Institute of Mental and Health and the Fogarty International Center of the U.S. National Institutes of Health to move forward with an initiative to support mental health training for researchers and clinicians from low-income countries. Finally, the Institute of Medicine at the National Academy of Sciences in the United States published Neurological Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World (Institute of Medicine, 2001), a review of not only the contribution of these conditions to the disease burden, but also an overview of effective prevention and treatment strategies. Yet, there is much work to be done. Graham Thornicroft and Michele Tansella (1999) concede that their model for evaluating and improving mental health services—which has proved so useful in the United Kingdom—cannot be readily utilized in large parts of the world because of a lack of information: “We believe that the situation in less economically developed countries needs to be separately addressed by those with the relevant direct personal experience” (p. 3). One purpose of the World Mental Health Casebook is to begin to provide that information by presenting case histories mostly authored by persons who either directed or worked in social and mental health programs in the developing world. We expect that these case histories will supply details that are vital to building model programs and to improving and expanding the services that do exist. Additionally, we hope the case histories will serve to encourage research and evaluations that inform us about the state of mental health needs and services in low-income countries. Before proceeding with an overview of the Casebook, it is necessary to offer a few cautionary comments. First, no single strategy or set of policies will fit the needs of all developing societies (Eisenberg, 2000); the case histories presented here must not be taken as universal models. They represent efforts that offer local lessons and solutions about, for example, the barriers that prevent more people from using the services
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that are available, the need for advocacy, and the destructive effects of stigma. How these problems, and others, can be solved will be determined by the specific circumstances under which other programs function. This volume presents options that may be appropriate to other situations. Second, given a century of research that has demonstrated the social roots of psychological distress, it is necessary to broaden our definition of what constitutes a mental health program. Increased rates of mental disorders, epilepsy, and mental retardation are associated with social and economic inequities, gender discrimination, political violence, malnutrition, and poor physical health (Desjarlais, Eisenberg, Good & Kleinman, 1995; Patel, 2000). There is abundant evidence that poverty, illiteracy, and being victimized by violence produce high levels of distress among women throughout the world (Patel, Araya, de Lima, Ludermir & Todd, 1999; Desjarlais et al., 1995). Another area of concern is the plight of the estimated 50 million people who, as of January 1, 1999, have been forced to flee their homes, either within their own countries or across international borders as refugees (United Nations High Commissioner for Refugees, 2000). These are all issues for which biomedical interventions are not adequate. Relieving the distress of gender inequities, the traumas of violence and displacement, and the emotional consequences of crushing poverty requires psychosocial interventions aimed at improving the well-being of individuals, families, and communities. Thus, we include a chapter on literacy programs in Northern India (Chapter 5) and how they improve the mental and social well-being of women. Third, progress will only be made if programs are evaluated to determine whether interventions achieve desired goals (Cohen, 2001). This is not a simple task. One must begin with basics: the population served, the number receiving the intervention(s), and the effect it has on the frequency, distribution, and severity of the targeted disorder(s). But it is not enough to stop there. In addition to examining the effectiveness of care at the individual level, we must assess the community-level benefits. No one can seriously question the social benefits of reducing infant mortality, eradicating smallpox, supporting efforts to reduce the spread of AIDS, or providing populations with clean water. Can we say the same for mental health services? We can make compelling arguments for the importance of relieving the suffering that mental disorders inflict on individuals and their families, but strengthening the case for extending mental health services to low-income populations will require evidence of how such services reduce the burden of mental disorders and contribute to the vitality and well-being of entire communities. For example: Does a program that increases the effective treatment of depression reduce rates of suicide and the severity of functional disabilities in a community? Intriguing evidence from Sweden indicates that this is a real possibility. The work of Wolfgang Rutz and colleagues (Rutz, von Knorring &
Introduction
9
Walinder, 1989; Rihmer, Rutz & Pihlgren, 1995) in Gotland, Sweden demonstrated that when general practitioners treated depression effectively, suicide rates and the frequency of sick leave for depression both decreased. Göran Isacsson and colleagues (Isacsson, Bergman & Rich, 1996; Isacsson, 2000), used epidemiological methods to show that expanding the treatment of depression will lower suicide rates in a targeted population. Interestingly, investigations found that the results were much stronger for women than men (Rutz, von Knorring, Pihlgren & Rihmer, 1995; Isacsson, Holmgren, Druid & Bergman, 1999). Does the treatment of epilepsy improve the well-being of communities? We know that epilepsy can be treated effectively even under the constraints faced by developing countries (Pal, Das, Chaudhury, Johnson & Neville, 1998; Sriram et al., 1990; Institute of Medicine, 2001). To date, however, we lack substantive data about the expected community-level benefits. Does treatment also result in, for example, fewer related injuries (burns and fractures) and deaths, lower drop-out rates in school, fewer cases of permanent brain damage, and decreased family burden? That is, we need to make the case that not treating epilepsy is more costly than treating it. Do psychiatric rehabilitation programs known to have beneficial effects on symptoms also make positive economic and social contributions to communities, decrease family burden and relieve depression and stress among caregivers, and change patterns of hospital use? Martin Knapp (2000, p. 16) suggests that the hidden costs of schizophrenia (e.g., unemployment and lost productivity) are substantial and fall not only on persons who suffer from this disorder, but also “to their families and other care-givers and to the wider society.” Demonstrating these broader effects would support the argument that funding the effective treatment of schizophrenia is a social investment. Fourth, while there is evidence from high-income countries of the costeffectiveness of treatments for schizophrenia (Knapp, 2000) and depression (Schoenbaum et al., 2001; Frank, McGuire, Normand & Goldman, 1999), “There is a paucity of ... cost-effectiveness studies from developing countries” (Shah & Jenkins, 2000, p. 92). China is one developing country for which evidence does exist from controlled clinical trials and cost effectiveness assessments that model community programs (in Shanghai, Sashi, Beijing, Nanjing, Guangzhou, Shenyang, Suzhou, Yantzi, and elsewhere) have been successful (Phillips & Pearson, 1994). For example, Xiong and colleagues (Xiong et al., 1994) have shown that if a simple family-based intervention—a model developed in Hubei—were used throughout urban China it would not only reduce symptoms and improve outcomes, it would also save as much money as is currently spent on all urban mental health services. Without more such evidence, it will be difficult
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to convince health and finance ministers that mental health programs are good investments. Therefore, obtaining these data must become a priority. Fifth, the pharmaceutical and biotechnological revolutions have, through the process of globalization, made new medications of all kinds available throughout the world, even in the poorest countries. Problems with pricing (both domestically and globally), along with the protection of patents and intellectual property rights, has meant that “availability” does not always translate into a regular or adequate supply of drugs to members of the poorest societies. (This is, for example, a major problem in Nepal, see Chapter 4). In recent years, substantial efforts have been launched to lower the costs of medications. As a result, anti-retroviral medications for HIV/AIDS are becoming more accessible in Sub-Saharan Africa, and more powerful antibiotics to treat multi-drug resistant tuberculosis are becoming more available world-wide (see Chapter 2). Similar efforts must be made regarding psychotropic medication. At the same time, we must proceed carefully. Veena Das, the Indian anthropologist, has demonstrated that the poor people of Delhi not only spend a large proportion of their incomes in the pursuit of good health, but that “Much of this expenditure is incurred on products [e.g., drugs, injections, and I.V. drips] that are either inappropriate or actually harmful to the health of those who consume them” (1999, p. 118). In view of this, Das (2000) fears that as psychotropic medications become more widely available, they, too, will be misused by unscrupulous and unregulated practitioners, and the resources of poor families will be further squandered. For those reasons, we must not only insure adequate and reliable supplies of medications, but also set in place regulations and systems that will ensure that those medications are used responsibly. The World Mental Health Casebook does not address all of these issues. Its goal is more modest: to begin the process of documenting what has been done so that we can build on those experiences and move forward. Whereas successful campaigns against smallpox, onchocerciasis (river blindness) (Ciment, 1999), measles (MMWR, 1999), and polio (MMWR, 2001) undoubtedly relied on the lessons of previous disease control efforts, this has hardly been the case for mental health programs in low-income countries. What we present in the Casebook are narratives that provide an ethnographic sense of how apparently successful programs have developed, functioned, and coped with a variety of challenges. The accounts try to avoid, however, the urge “to forge a success story” (Das, 1999) and thereby ignore or hide problems. None of the descriptions are of unflawed programs—and we consider that a strength. To build successful, effective programs it is not enough to know what works. We must also know what does not work so that we do not repeat mistakes or pursue flawed strategies. We see the Casebook as a first step, one that raises more questions than it answers. Perhaps most important among them is: By what measures should we determine the extent to which a program has succeeded? This is not an easy
Introduction
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question to answer in the context of scarce human, financial, and technical resources; when the proven efficacy of treatments evaporates in the realities of local worlds and social programs are difficult to sustain. One can find information from epidemiological surveys, data on the number of people treated in a given program, or the extent of short-term changes in mental health knowledge and attitudes of care providers. But these are not good indicators of success. Improvements in knowledge and attitudes do not always translate into better care. Effective interventions will be undermined if drug supplies are inadequate or erratic. The need to attend to epidemics—HIV/AIDS, tuberculous, diarrheal diseases, and maternal mortality—may distract health systems from the provision of mental health services. In brief, a thorough understanding of local contexts is essential in the assessment of programs. For example, lacking an understanding of the challenges that face the treatment of epilepsy in rural Nepal, one might dismiss the program described in Chapter 4 because it failed to rectify the disparity between the number of people in need of care and those who are actually receiving it. Yet, given the extreme poverty and the difficulties in transportation in rural Nepal, the program’s ability to treat hundreds of people is a substantial achievement. In much the same way, one might dismiss the work with Guatemalan refugee women described in Chapter 3 because outcome measures are lacking and a relatively small number of people were trained to be mental health promoters. This is not to say that we must blindly accept programs simply because they exist, or excuse sub-standard treatments because nothing else is available. Nor should we condemn programs because they do not manage to overcome a host of barriers and immediately achieve consistently excellent clinical results. One must attempt to build on experience by making honest assessments, considering successes and shortcomings in the context of local realities, and using that understanding to improve the programs in question. We must view the establishment of effective mental health services as an on-going, lengthy process, a process in which information from periodic and rigorous assessments is used to improve services. It would be a mistake to censure a program simply because it is in the early stages of development and has not yet been able to overcome all barriers. Criticism, however, is appropriate if there is no evidence of attempts to recognize and address short-comings. As important as outcome data and evidence of cost-effectiveness may be, we cannot wait for research to provide all the necessary answers. The burden of mental disorders in low-income countries needs to be addressed now. Fortunately, we know a great deal about the general principles that underpin good mental health services (WHO, 200 1c) so that it is possible to proceed with the evaluation and improvement of current services, as well as the implementation of new services. One must not assume, however, that valid and reliable evaluations necessarily require sophisticated research methods (e.g., randomized controlled trials, case control studies), validated survey instruments, expensive statistical computer
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software, and the skills of a highly trained research team. While these tools are desirable, much can be learned from site visits, observing practices, reviewing records, and interviewing staff and clients. That is, an ethnographic approach to evaluation has much to offer the task of assessing programs, particularly when it is not feasible to employ other methods. We suggest that the following topics be examined in the qualitative evaluation of services: The need for an array of services. While psychotropic medications are necessary, especially in cases of severe disorders, an exclusively biomedical approach to treatment is not sufficient. Psychotropic medications have little to offer mentally retarded children and adults who have far more need of day programs that provide socialization and educational activities. Support groups for persons (and their families) who suffer from a range of mental disorders can be immensely helpful. Psychiatric rehabilitation represents a range of strategies, from psychotherapy to instruction in social skills. As described in Chapter 1, essential features of Shanghai’s services for persons with schizophrenia include family associations, occupational therapy, and psychosocial education. Outreach is essential to identify persons in need of services since significant treatment gaps are associated with all types of mental disorders, especially in the developing world. Presumably, public education (the “mental health camp” described in Chapter 4 is a fine example) and making services more accessible can narrow the gap between the number of people in need and the number actually receiving services. Then, once patients are in treatment, it is essential that programs take follow-up seriously and be flexible in the delivery of care. However, outreach and follow-up can only be achieved if programs are sensitive and responsive to local needs. Too often, failure to adhere to treatment regimens is blamed on the personal characteristics of patients, when, in fact, service providers have failed to adapt to the needs of the population they are supposed to be serving (Koegel, 1992; Cohen, Farmer & Kleinman, 1997). Drug supplies must be reliable and adequate so that patients can be confident that the required medications will be available when needed and at a reasonable cost. Economics are most important in this regard, but other factors must be considered, too. Inventory systems that track supplies and deter theft are essential. Delivery systems which ensure that medications get from central storehouses to health posts and clinics are critical. Treatment interventions must conform to international standards (Sartorius, de Girolamo, Andrews, German & Eisenberg, 1993), i.e., do mental health practitioners provide appropriate treatment and care? This must be seen as a programmatic issue, not one relating exclusively to individual practitioners. Guidelines for best practices must be developed; programs must undertake training and education to elevate the clinical expertise of practitioners, and then assess the effects through regular testing. The psychosocial environments that engender distress must be taken into consideration when developing and evaluating programs. Program developers
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and policy-makers must, at times, consider literacy, adult education, job training classes, working to improve social support networks, running psychosocial support groups, or simply providing the basic necessities of life (food, clothing, shelter, companionship, health care) as essential components of community mental health services. Intersectoral funding should be sought to support those activities that do not fall directly under the purview of Ministries of Health. It is essential that programs embrace basic principles of human rights. Social and mental health programs cannot be considered successful unless they relate to the people they serve as human beings, fully deserving the rights accorded to all citizens of the world. The approach to evaluation outlined above, and the case histories in this volume, suggest criteria for determining whether a program is successful, as well as a framework for an ethnographic project that would examine and document mental health programs throughout the developing world. The first step in such a project would be the identification and selection of a sample of programs that represented a range of sociocultural environments, health systems, and geographic regions. Background information about the programs would then be collected, including the historical antecedents to each, an overview of the social, cultural, political, and economic environments in which it functions, and an account of how and why it was established. The next step would be the documentation of how each program is financed, its administrative organization and staffing structure, and its relationship to the overall health system. These details, though often mundane, are of great importance. As we shall see in Chapter 6, the success of the transformation of the psychiatric hospital in Trieste was as much the result of strategic political alliances and administrative acumen as they were of changes in clinical practices. It is also true that inattention to financial, organizational, and resource issues can bring about the failure of even the best of services. The third step in the process would be a review of clinical practices. But it is critical that the evaluation goes beyond testing staff on their knowledge and attitudes about mental disorders because, as noted above, these are not good measures of how patients are actually treated. For example, even when primary care patients with depression are diagnosed correctly, the treatment they receive is often inadequate (Simon et al, 1995; Wang, Berglund & Kessler, 2000; Wells, Schoenbaum, Unutzer, Lagomasino & Rubenstein, 1999). At the very least, reviewing patient records and observing the services in operation would provide a good idea about whether a program met minimum standards. Examination of patient outcomes using personal narratives and ethnographic descriptions would be critical, too. If patients and families consistently report negative staff attitudes, erratic medication supplies, or services which are inaccessible, one can safely assume that the services are not optimal. If, on the other hand, patients and families report improved well-being and satisfaction with care, one can assume that the services are effective at a basic level. Detailed descriptions of the communities in which programs are situated are of importance, too. Ethnography, more than any other methodology, is well-suited
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to providing a sense of what is “at stake” in the local worlds of patients, families, and services (Kleinman, 1999). By this we mean an understanding of how individuals and institutions prioritize their needs and make decisions about health. Lacking this understanding, it may be difficult to know why, for example, there is a treatment gap for epilepsy or why particular interventions are not accepted by communities. Ethnography, the major methodology of anthropology, can inform us about the cultural appropriateness of programs and warn us against trying to introduce interventions that are not congruent with local values and world-views. As Thomas Csordas and Arthur Kleinman (1990, p. 25) have written, “If therapeutic transformation is to occur, it must occur not only in the event but in a person’s life between events, as a social and experiential process.” In other words, no intervention will be successful if it does not make sense to the individuals for whom it is intended. Ethnography is also critical to understanding the ethos of a mental health service: the values and attitudes that shape and organize how practitioners use available techniques. Even if universal principles of treatment and care are accepted, how they are interpreted and applied will vary cross-culturally. To cite Csordas and Kleinman (p. 18) again, social and cultural worlds are “embedded in the therapeutic process” and, by extension, into service systems. Thus, no mental health program is value-free. This is apparent in the cultural values that underpin programs described in two of the case histories. The development of psychiatric rehabilitation services in Shanghai (Chapter 1) were developed following a belief in the need for social control of deviant behavior, whereas psychiatric services in Trieste (Chapter 6) were developed with a belief in the supremacy of individual freedom. A comparative ethnographic study, by collecting illness narratives and through participant-observation, would reveal how the ethos of each of these services and the sociocultural environments within which they operate influence the lives of patients and families and shapes the course and outcome of schizophrenia. We believe that ethnographic evaluations would have two major accomplishments. By documenting programs, discussing their problems honestly, and assessing clinical practices and patient outcomes, the evaluations would facilitate the improvement of existing services. In addition, the knowledge base generated from the evaluations would be an invaluable resource for the development and establishment of new programs by making it possible to avoid failed strategies and to build on the success of predecessors. The other accomplishment would be the preparation of the groundwork for quantitative mental health services research—economic studies (including analyses of cost-effectiveness for specific interventions), randomized clinical trials, and case-control studies—that are so lacking in the developing world. We see evaluation as a strategy whose ultimate purpose is to transform successful local mental health programs into regional and national programs: the lessons learned from thorough documentation and rigorous evaluation will
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provide the basis for broad policies that will achieve this goal. However, nothing will be achieved without commitments from national governments, international agencies, non-governmental organizations, or Western foreign aid programs. First, to carry out evaluations, it will be necessary to strengthen the research capacities of low-income countries through the establishment of international collaborative centers of excellence (in both the developing and the developed world) where researchers can be trained in mental health services and policy relevant research. This, as well as the support of career development in this area, are crucial areas for funding in the future. Additionally, evaluation of on-going or demonstration projects will have little consequence if the lessons learned are not applied. Indeed, we have an ethical responsibility to implement the lessons of service demonstrations (Goldman, 2000) and, therefore, evaluations must to tied to support that would, if appropriate, move local successes toward wider generalization. In sum, unless we move toward rigorous evaluation of mental health programs in lowincome countries—and all the associated obligations—progress toward the improvement and expansion of mental health services in low-income will be slow and haphazard. The comments that follow highlight what we feel are the most important issues touched upon in each chapter. Chapter 1: Rehabilitation of Schizophrenia Patients in China: The Shanghai Model by Doris Chang, Xu Yifeng, Arthur Kleinman, and Joan Kleinman According to its Ministry of Health, there are as many as 7.8 million persons with schizophrenia in China (Yin, 2000). Under the best of circumstances, providing comprehensive care to all of them would be a daunting task, but the lack of mental health personnel and psychiatric facilities, as well as socioeconomic changes that have undermined social support systems, are making it increasingly difficult for families to care for members who are severely mentally ill. Adding to the problem is stigma, which is severe and often leads to social isolation for both patients and their families. Despite this “bleak picture,” Doris Chang and colleagues offer cause for optimism. In the last several decades, China has made significant strides toward the development of a unique system of care for persons with severe mental illness, and in recent years, has made mental health, in general, a public health priority. This commitment was evident in the three national meetings about mental health, and in that the Ministry of Health is now beginning to gather evidence about the effectiveness of interventions and seems ready to generalize successful programs to larger population groups. One very tangible reason for the cautious optimism of Chang and colleagues is the Shanghai model, a community-based rehabilitation program that operates at the municipal, district, and community levels. Including follow-up programs, services in factories, occupational work stations, and guardian networks, this model
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presents strong evidence for the development of an array of services for persons with schizophrenia, rather than an exclusive reliance on psychopharmacology. The account of the work of the Shanghai Psychosocial Rehabilitation Association is important, too, in that it demonstrates, in practical everyday terms, the great need for the establishment of advocacy and support groups. However, one must not be overoptimistic. Powerful socioeconomic forces are rapidly undoing many community-based rehabilitation programs in China (Phillips, 1998). Whether the Shanghai model, as well as those in other communities, can withstand or adapt to these changes is an open question.
Chapter 2: Enhancing Adherence: The Role of Group Psychotherapy in the Treatment of MDR-TB in Urban Peru by Annika Sweetland, Julio Acha Albújar, and Dalia Guerra Echevarria The program described in this chapter must be considered one of the most remarkable mental health programs in the developing world. First, this program demonstrates that the sequelae of infectious diseases are not confined to physical morbidity and mortality. As the authors of the chapter write, “In the case of MDR-TB, even when individuals gain access to treatment, the emotional toll experienced by individuals and families demands attention. Psychosocial support for individuals and families is central to their rehabilitation and ability to live dynamic and productive lives after the completion of successful treatment.” Second, the significance of this intervention for the success of other infectious disease programs cannot be underestimated. In the case of HIV/AIDS, treatments are life-long and complicated, which has raised some doubts about whether it is prudent to promote the use of anti-retroviral therapies in societies that lack sophisticated public health infrastructures. This case history puts a lie to those doubts. Even in the most dire of social circumstances, patients are able to adhere to regimens and effective treatments are possible if interventions include psychosocial supports. We hope that infectious diseases programs take note of the achievements in Peru and become more active in helping patients under their care adhere to treatment regimens. Lastly, this model—which is low-cost, attuned to psychosocial needs rather than just psychiatric symptomatology, and not necessarily dependent on mental health professionals—may prove to be a useful strategy for the development of community-based mental health programs in general. Indeed, the approach has already proved successful in poor settings: participation in a support group was found to reduce the frequency and length of hospitalizations among mentally ill persons in a rural area of South Africa (Lustig, Malomane & Tollman, 1997). These experiences should be explored and, if appropriate, used as an essential component of community-mental health systems in low-income countries.
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Chapter 3: Mental Health Promoter Training with Guatemalan Refugee Women in Mexico City and the Camps of Southern Mexico by Deborah L. Billings and Inda Sáenz In the past 25 years, tens of millions of people in low-income countries have been forced to flee their homes because of political violence. Millions of others have been dislocated by economic factors and environmental devastation. The extent of the mental distress experienced by refugees is well-known, and by documenting the work of the Comitè del Distrito Federal de Ayuda a Refugiados Guatemaltecos, Deborah Billings and Inda Sáenz make a significant contribution to the literature. What makes this case history particularly compelling is the ethnographic perspective it offers about programs in Mexico City and the camps of southern Mexico. In the former, the sociopolitical context demanded that refugees conceal their identities and remain isolated because of their status as illegal immigrants. Therefore, the program focused on the traumas they had experienced in Guatemala and the difficulties of adjusting to their new circumstances. Later on in the camps, the program continued to attend to the consequences of trauma and the problems encountered by women (domestic violence, lack of access to education, and few employment opportunities), but rather than needing to cope with isolation, the refugees faced the task of forming communities that were based not on traditional notions of ethnicity and language but rather on their status as refugees. Furthermore, in contrast to the early days in Mexico City, when it was necessary to help people cope with the trauma of fleeing their homes, the task a decade later was to help people come to terms with the emotional issue of returning to Guatemala. One lesson here is that one must be wary of the appropriateness of universal models. Rather, the development of programs must begin with a detailed awareness of the problems and issues that communities face during a particular historic period. Included in the case histories are narratives of refugees that eloquently speak to the experiences of somatization of trauma, domestic violence, and training to become a mental health promoter. Billings and Saenz give the reader an immediate sense of the emotional lives of the Guatemalan women refugees and the challenges that were faced by the programs, in particular the process of how Western and local concepts of mental health and treatment can be merged. The question remains, however, of how to more precisely measure the impact of the work. The numbers reported on are small; outcome data on individuals and substantiated effects on communities are lacking. We do not mean to single out the programs for these deficiencies. As noted above, there is a glaring lack of evaluative research on the effectiveness of mental health programs in the developing world. To their credit, Billings and Sáenz cite the need for more systematic evaluation as one of the most important challenges in the improvement and expansion of mental health services for refugees. We believe that this case history raises issues and provides background information that will be essential in formulating more systematic evaluations.
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Chapter 4: Mental Health Services in Primary Care: The Case of Nepal by Sarah Acland For ten years, Sarah Acland worked in the Mental Health Program of the United Mission to Nepal; for five of those years she directed the program and oversaw its expansion. This case history, which is a product of that experience, will surely take its place with David Ben-Tovim’s (1987) Development Psychiatry, and Joop de Jong’s (1987) A Descent into African Psychiatry. Dr. Acland presents valuable details about such matters as how the program is financed, the nature of training activities, the treatment of epilepsy, the development of locally appropriate diagnostic methods, and the results of program evaluations. One of the most fascinating sections of the chapter is the report on the mental health camp in the village of Gandruk. Rich with details about the village, it offers a rare glimpse into activities that deserve more attention: strategies to raise awareness about mental disorders and to initiate services for people in remote areas. But what is most striking about Dr. Acland’s account is its honesty. Rather than covering over problems, Dr. Acland faces them: the difficulties of working within Nepal’s primary care system; the paucity of mental health resources; the reluctance of public health officials to concede that mental disorders can be treated and pose a significant burden of disease; stigma; political instability; the issue of providing regular and productive supervision to health post staff; the lack of attention to the problems of children and adolescents. Readers must not mistake this as pessimism, however. Rather than pushing the problems aside in an effort to gloss the program for the benefit of potential donors, Dr. Acland faces them so that they can be addressed and the program improved. Such honesty is not common; it should serve as a standard for other accounts of mental health programs. Chapter 5: “Our Lives Were Covered in Darkness”: The Work of the National Literacy Mission in Northern India by Alex Cohen Illiteracy—and female illiteracy, in particular—is associated with a host of social ills, including high rates of fertility, infant and maternal mortality, and poverty. In India, widespread female illiteracy is one manifestation of severe gender inequities. In this chapter, based on site visits and interviews with women neo-literates and officials of the National Literacy Mission in Himachal Pradesh, Rajasthan, and Delhi, Alex Cohen explores the connections between adult literacy programs in Northern India and women’s mental health. He concludes that the programs acted to improve the mental health of women by providing them with skills that gave them a greater ability to exercise greater control over their lives. The classes also provided women with the opportunity to experience new social forms in which they could learn and exchange knowledge about a wide range of topics. Thus, the classes acted as gateways into wider worlds that were previously barred.
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The topic of literacy is touched upon in several chapters of the Casebook. As part of its community education efforts, the Mental Health Program of Nepal developed story-books about mental health for use in adult literacy classes. Billings and Saenz report that illiteracy prevented many Guatemalan women refugees from participating in mental health training. In Trieste, patient cooperatives hold literacy classes in a building of the former psychiatric hospital. Yet, the topic of the mental health effects of becoming literate have received comparatively little attention. An evaluation of the National Literacy Mission raised this question and suggested the need for qualitative research that examines the process of becoming literate and its consequences for mental health and social relationships (Ghosh et al., 1994). We hope this chapter prompts such research in India and elsewhere. Chapter 6: The Risk of Freedom: Mental Health Services in Trieste by Alex Cohen and Benedetto Saraceno Trieste, a province in the northeast corner of Italy, is obviously not in the developing world. We believe, however, that this story is relevant and vitally important because it demonstrates how institutional systems of care can be transformed into community-based systems. During the 19th and early 20th centuries, European powers established large mental asylums throughout their colonies. At the end of European rule, these asylums represented virtually the only Western mental health facilities that remained in the developing world. Many of these countries now face the problem that presented itself to Trieste (and the rest of Italy) in the late 1960s and early 1970s: How is it possible to convert inefficient and harmful psychiatric institutions into effective and humane community-based systems of care? Franco Basaglia, who spearheaded the psychiatric reform movement in Italy, provided answers to that question through his work in Trieste. First, Basaglia was adept at forging alliances with the government, labor unions, and community groups. This gave him the political support he needed to carry out the reorganization of the hospital, to develop psychiatric services in the community, and to reestablish former patients as full, legal citizens of the province. Second, Basaglia and his coworkers refused to isolate mental illness from the social context in which it occurs. They struggled against stigma and asserted that the treatment of mental illness must include social interventions, including the right to work, decent wages, and a place to live in the community. They emphasized the need for social reintegration of patients and made this the centerpiece of services. Most remarkable about the Trieste experience were the values that served as the foundation of the reforms. Basaglia and his coworkers had an unshakeable belief in freedom. Rather than thinking of freedom as a reward only to be given to patients who cooperate with treatment, mental health services in Trieste were built on the premise that freedom is a prerequisite for effective care. This was the basis for the closure of the hospital, the reinstatement of the civil rights of former patients, and the establishment of patient cooperatives. The Trieste experience
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demonstrates the need to critically examine the institution of psychiatry itself, to move beyond a narrow concentration on “technical” concerns and solutions (e.g., diagnostic criteria and biomedical interventions) and consider the problems of severely mentally ill persons in a broad social context, concerns about human rights, respect for the person, and freedom from abuses such as stigma, paternalism, exploitation, and abandonment. The relevance of what took place in Trieste extends across the world, to rich and poor societies alike, and points out that lessons in the mental health field can move in two directions, from rich to poor and poor to rich societies. Chapter 7: Indigenous Models for Attenuation of Postpartum Depression: Case Studies from Fiji and Hong Kong by Anne E. Becker and Dominic Lee The final chapter of the Casebook is not a case history of a program, but an examination of how certain customs in traditional societies appear to protect women against postpartum depression. In Fiji and Hong Kong, where women are given great amounts of support following childbirth, rates of postnatal depression are low relative to what is found in Western societies. On a theoretical level, this evidence corroborates the notion that postnatal depression is not entirely determined by biology, that its etiology is found in the interaction of biological and sociocultural factors. It is on a practical level, however, that Anne Becker and Dominic Lee make their most important contribution. The traditional postnatal practices described by them can be used to inform the development of prevention and treatment services for postnatal depression in poor and rich nations alike. For example, freeing women from the need to work could be translated into social legislation that provides material support to women and their families in the months following childbirth. The role of the traditional caretaker—the peiyue relative in Chinese society—might be replicated by a range of social supports including daily visits from a community health worker or birth attendant, a program that provides meals to women and their families, and mothers’ support groups. These lessons are applicable across a range of societies, but may be most useful in those very societies that have culturally elaborated postpartum sanctions and supports. As social and economic forces sweep across the world with increasing speed, penetrating into even the remotest regions and societies, there is little question that postpartum sanctions and supports, along with many other traditional practices, will be eroded. History has demonstrated that this process is usually fraught with enormous problems. This is not, however, a story of tradition vs. modernity—which is a false dichotomy—but of possible responses to global change. We need to document such traditional, positive examples and use our understanding of them for several purposes: to anticipate the mental health effects of social change and develop effective responses, to determine what elements of the examples are applicable elsewhere, and, most importantly, to be certain that
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such positive examples can be permanently maintained in their original settings, in the context of indigenous, culturally appropriate mental health policies. The case studies from Fiji and Hong Kong offer strategies that will help to mitigate the effects of chaotic social change, albeit in one relatively small, but vitally important area of concern. After decades of neglect, mental health is finally taking its place on the international public health agenda. The World Health Report 2001 (WHO, 2001c) sets out a bold agenda by recommending the following actions: provide treatment in primary care, make psychotropic drugs available, give care in the community, and support more research, among others. Recognizing that not all countries are equally capable of implementing the recommendations, the Report also outlines three scenarios for action according to different levels of available mental health resources. Therefore, the strategies for the improvement and expansion of mental health services in low-income countries are quite different from those taken in middle- and high-income countries. This is a sound approach, one that we expect will serve as a useful guide for clinicians, researchers, policy-makers, and public health authorities. We also believe that we can only move forward and build on experience if we know what has been done, critically examine the successes and failures, and then apply that knowledge practically. The documentation and evaluation of mental and social health programs in the developing world are essential tasks in this effort. Within this framework, we offer the World Mental Health Casebook. At the very least, we see the case histories as early attempts that, hopefully, will lead to the more developed research that we outlined above. More immediately, and of great importance, each chapter, through concrete and pragmatic examples, offers lessons that can inform the functioning of services elsewhere. We also hope that the case histories will encourage others to undertake careful documentation and evaluation so that the mistakes of the past can be avoided. As such accounts accumulate, we will have a rich database on which to formulate policies and develop more and better programs.
REFERENCES Abiodun, O. A. (1991). Knowledge and views on drug abuse of primary health care workers in Nigeria. Drug and Alcohol Dependence, 28, 177–182. AHCPR. (1993a). Clinical practice guideline, Number 5: Depression in primary care, vol. 1: Detection and diagnosis. Washington, DC: US Department of Health and Human Services, Public Health Service, Agency for Health Care Policy and Research. AHCPR. (1993b). Clinical practice guideline, Number 5: Depression in primary care, vol. 2: Treatment of major depression. Washington, DC: US Department of Health and Human Services, Public Health Service, Agency for Health Care Policy and Research.
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Alarcón, R. D., & Aguilar-Gaxiola, S. A. (2000). Mental health policy developments in Latin America. Bulletin of the World Health Organization, 78, 483–490. Alem, A. (2000). Human rights and psychiatric care in Africa with particular reference to the Ethiopian situation. Acta Psychiatrica Scandinavica, Suppl. 399, 93–96. Ben-Tovim, D. I. (1987). Development psychiatry: Mental health and primary health care in Botswana. London: Tavistock Publications. Benson, J. (2001). The impact of privatization on access in Tanzania. Social Science & Medicine, 52, 1903–1915. Bertolote, J. M., & Saraceno, B. (Eds.). (1996). Psychosocial rehabilitation: A consenses statement. Geneva: World Health Organization. Birley, J. L. (2000). Political abuse of psychiatry. Acta Psychiatrica Scandinavica, Suppl. 399, 13–15. Bloch, S. (1997). Psychiatry: An impossible profession? Australian & New Zealand Journal of Psychiatry, 31, 172–183. Brenner, H. D., & Pfammatter, M. (2000). Psychological therapy in schizophrenia: What is the evidence? Acta Psychiatrica Scandinavica, 102(Suppl. 407), 74–77. Ciment, J. (1999). WHO celebrates triumph over river blindness. British Medical Journal, 319, 1090. Cohen, A. (2001). The effectiveness of mental health services in primary care: The view from the developing world. Geneva: World Health Organization. Cohen, A., Farmer, P., & Kleinman, A. (1997). Health-behavior interventions: With whom? Health Transition Review, 7, 81–85. Csordas, T. J., & Kleinman, A. (1990). The therapeutic process. In T. M. Johnson & C. F. Sargent (Eds.), Medical anthropology: A handbook of theory and method (pp. 11–25). New York: Greenwood Press. Das, V. (1999). Public good, ethics, and everyday life: Beyond the boundaries of bioethics. Daedalus, 128, 99–134. Das, V. (2000, 11 April). Views from the developing world: India. Presented at the conference Placing Mental Health on the International Health Agenda. Harvard Medical School, Boston, MA. de Jong, T. V. M. (1987). A descent into African psychiatry. Amsterdam: Royal Tropical Institute, the Netherlands. Desjarlais, R., Eisenberg, L., Good, B., & Kleinman, A. (1995). World mental health: Problems and priorities in low-income countries. New York: Oxford University Press. DHHS. (1999). Mental health: A report of the Surgeon General. Rockville, MD: US Department of Health and Human Services, Center for Mental Health Services, National Institutes of Health, National Institute of Mental Health. DHHS. (2001). Mental Health: Culture, Race and Ethnicity. Available: www.surgeongeneral.gov. Eisenberg, L. (2000). Getting down to cases—Making mental health interventions effective. Bulletin of the World Health Organization, 78, 511–512. Falloon, I. R., Held, T., Roncone, R., Coverdale, J. H., & Laidlaw, T. M. (1998). Optimal treatment strategies to enhance recovery from schizophrenia. Australian & New Zealand Journal of Psychiatry, 32, 43–49. Frank, R. G., McGuire, T. G., Normand, S. L., & Goldman, H. H. (1999). The value of mental health care at the system level: The case of treating depression. Health Affairs, 18(5), 71–88. Ghosh, A., Mazumdar, V., Beteille, A., Ananthamurthy, U. R., Kansal, S. M., & Vanaik, A. (1994). Evaluation of literacy campaign in India: Report of expert group. New Delhi: National Literacy Mission, Directorate of Adult Education, Ministry of Human Resource Development, Department of Education, Government of India. Goldman, H. H. (1998). Deinstitutionalization and community care: Social welfare policy as mental health policy. Harvard Review of Psychiatry, 6, 219–222. Goldman, H. H. (2000). Implementing the lessons of mental health service demonstrations: Human rights issues. Acta Psychiatrica Scandinavica, Suppl. 399, 51–54.
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Schoenbaum, M., Unutzer, J., Sherbourne, C., Duan, N., Rubenstein, L. V., Miranda, J., Meredith, L. S., Carney, M. F., & Wells, K. (2001). Cost-effectiveness of practice-initiated quality improvement for depression: Results of a randomized controlled trial. JAMA, 286, 1325–1330. Schulberg, H. C., Block, M. R., Madonia, M. J., Rodriguez, E., Scott, C. P., & Lave, J. (1995). Applicability of clinical pharmacotherapy guidelines for major depression in primary care settings. Archives of Family Medicine, 4, 106–112. Schulberg, H. C., Block, M. R., Madonia, M. J., Scott, C. P., Lave, J. R., Rodriguez, E., & Coulehan, J. L. (1997). The ‘usual care’ of major depression in primary care practice. Archives of Family Medicine, 6, 334–339. Schulberg, H. C., Katon, W., Simon, G. E., & Rush, A. J. (1998). Treating major depression in primary care practice: An update of the Agency for Health Care Policy and Research practice guidelines. Archives of General Psychiatry, 55, 1121–1127. Shah, A., & Jenkins, R. (2000). Mental health economic studies reviewed in the context of those from developed countries. Acta Psychiatrica Scandinavica, 101, 87–103. Simon, G. E., Lin, E. H. B., Katon, W., Saunders, K., VonKorff, M., Walker, E., Bush, T., & Robinson, P. (1995). Outcomes of “inadequate” antidepressant treatment. Journal of General Internal Medicine, 10, 663–670. Sriram, T. G., Chandrashekar, C. R., Moily, S., Kumar, G. S. U., Subramanya, K. R., Hiremath, S. B., Puttamma, M., & Isaac, M. K. (1990). Epilepsy in primary care: 2. A study of follow up profile and response to treatment. NIMHANS Journal, 8, 133–137. Tansella, M., & Thornicroft, G. (1998). A conceptual framework for mental health services: The matrix model. Psychological Medicine, 28, 503–508. Thornicroft, G., Wykes, T., Holloway, F., & Johnson, S. (1998). From efficacy to effectiveness in community mental health services. PRiSM Psychosis Study. 10. British Journal of Psychiatry, 173, 423–427. Thornicroft, G., & Tansella, M. (1999). The mental health matrix: A manual to improve services. Cambridge: Cambridge University Press. United Nations High Commissioner for Refugees. (2000). UNHCR & Refugees: UNHCR by numbers, Table 1. Available: http://www.unhcr.ch/un&ref/numbers/table1.htm (Accessed 15 August 2000). United Nations. (1991). The protection of persons with mental illness and the improvement of mental health care. UN General Assembly Resolution A/RES/46.119. Available: http://www.un.org/ ga/documents/gadocs.htm. Wang, P. S., Berglund, P., & Kessler, R. C. (2000). Recent care of common mental disorders in the United States: Prevalence and conformance with evidence-based recommendations. Journal of General Internal Medicine, 15, 284–292. Wells, K. B., Schoenbaum, M., Unutzer, J., Lagomasino, I. T., & Rubenstein, L. V. (1999). Quality of care for primary care patients with depression in managed care. Archives of Family Medicine, 8, 529–536. Wells, K. B., Sherbourne, C., Schoenbaum, M., Duan, N., Meredith, L., Unutzer, J., Miranda, J., Carney, M. F., & Rubenstein, L. V. (2000). Impact of disseminating quality improvement programs for depression in managed primary care: A randomized controlled trial. JAMA, 283, 212–220. WHO. (1975). Technical Report Series 564. Geneva: World Health Organization. WHO. (1999). Setting the WHO agenda for mental health (Tech. Rep. No. WHO/MNH/99.1). Geneva: World Health Organization. WHO. (200la). Atlas: Mental health resources in the world, 2001. Geneva: World Health Organization. WHO. (2001b). Fifty-fourth World Health Assembly: Ministerial Round Tables (Provisional agenda item 10 No. A54/DIV/4). Geneva: World Health Organization. WHO. (2001c). The world health report 2001. Mental health: New understanding, new hope. Geneva: World Health Organization.
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Chapter
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Rehabilitation of Schizophrenia Patients in China The Shanghai Model DORIS F. CHANG, XU YIFENG, ARTHUR KLEINMAN, AND JOAN KLEINMAN The histories of the mentally ill were written with tears and blood. HSU ZONGHUA, 1904–1970, Founding Director, Shanghai Psychiatric Hospital
SCHIZOPHRENIA IN CHINA AND THE BURDEN OF CARE The most comprehensive psychiatric epidemiological study in China reported a point prevalence of schizophrenia of 6.06 cases per thousand in urban areas and 3.42 per thousand in rural settings (Coordinating Group for the 12-Region Epidemiological Survey of Mental Illnesses, 1986). With a population of 1.3 billion people, three-quarters of whom reside in rural areas, these rates would translate into approximately 5.3 million persons with schizophrenia at any given time. However, in November 1999, the Chinese Ministry of Health substantially revised this estimate, unveiling new research findings indicating that China had as many as 7.8 million schizophrenic persons (Ministry of Health Announcement, 11 November 1999). Unlike the situation in the West, where large proportions of persons with schizophrenia live on their own or in various forms of institutions (e.g., hospitals, nursing homes, halfway homes, shelters), over 90% of Chinese persons with schizophrenia live with their families (Phillips, 1993). In the United States, the corresponding figure is less than 40% (Torrey, 1988). Homelessness is not a large 27
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problem in China, but lack of psychiatric treatment is. It is estimated that onethird of schizophrenia patients have never received psychiatric diagnosis or treatment. Pronounced stigma, the relative lack of psychiatric facilities, and the erosion of social supports, including the breakdown of the rural health care system, mean that the great majority of patients suffering from schizophrenia at any given time are without treatment and follow-up services. In the era of economic reforms, hospital costs have increased dramatically, while the percentage of the population with comprehensive health insurance and the availability of governmentsubsidized hospital beds has declined. There is little research evidence to suggest that the social course of schizophrenia is much different in China than in the West; albeit in the International Pilot Study of Schizophrenia conducted by WHO in the 1960s and 70s, patients from Taiwan, on average, experienced a course that was less severe than in the West, but still not as good as in India, Nigeria or Colombia. The stigma associated with mental illness is ancient and profound, so that Chinese patients often experience discrimination in school, workplace, and community. Moreover, the stigma of mental illness extends beyond the individual to his or her family, the result of a traditional belief that mental illness is a punishment for an ancestor’s misdeeds. “Madness” is frequently associated with strange, aggressive, and deviant behavior in a society that prizes conformity, reticence, and harmonious social relations. As a result, family members housing a mentally ill family member may experience social isolation or, in the worst cases, physical attacks from community members uninformed about the causes and course of mental illness. In turn, they may overprotect patient members, keeping them at home. Within this often hostile environment, cultural, financial, and practical concerns require the family to shoulder a considerable amount of the responsibility for caring for a mentally ill member. Traditional Confucian values emphasize the centrality of the family unit and, in particular, the parent–child relationship. Family stability and harmony is prized, and the ability of the family to control and order its members is viewed as key to maintaining societal stability. The mandate to care for a chronically ill individual is inscribed in traditional Chinese values and, as such, the family stands as a significant national resource in the effort to provide support for the mentally ill. The legal system places the burden of responsibility for the behavior of psychiatric patients on the parents, who may retire early to provide near full-time care to an adolescent or young adult schizophrenic patient. Yet, the relative lack of, and poor access to, psychiatric facilities, particularly in rural areas, often means that mentally ill individuals do not receive the treatment and medication that they need, resulting in an unfavorable course of illness and increasing the family’s burden of care. In 1995, the entire country of China had less than a thousand psychiatric institutions with approximately 141,000 publicly and privately-owned psychiatric beds (Zhang, Yan & Phillips, 1994). While these figures represent an 80- to
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100-fold increase in mental health resources since 1949, there were still only 1.2 beds per 10,000 population. The Ministry of Health and the Ministry of Civil Affairs are the major providers of in-patient services with the majority of publicly-owned hospitals located in urban or suburban settings; there are also hospitals run by the military, the railroad systems, and the police. The last has been reported to have low quality care and other difficulties, including claims of the abuse of psychiatry which are being investigated by the Chinese Psychiatric Association. However, in the era of economic reforms, hospitals increasingly must rely on their own income-generating abilities, rather than subsidies from the government. As a result, there has been a two to three-fold increase in the relative cost of health care to the consumer over the past decade (Phillips, 1998). The most popular method employed by psychiatric hospitals to increase revenue is the increased use of unnecessary drugs and procedures, including prolonged hospital stays. Both Pearson (1995) and Phillips (1998) reported that length of hospitalization for psychiatric patients was related to whether the patient had health insurance, rather than the type or severity of illness. By 1992, the percentage of individuals with comprehensive health insurance from the government or their employers had declined to only 11% of the total population, with the vast majority of them living in cities (Phillips, 1998). Insurance reform has affected the rural areas as well. In 1989, only 5% of the rural population were covered by the system of cooperative heath insurance, compared to 84.5% in 1975 (Gu et al., 1993). Because of these reforms, more and more families in China are forced to bear the burden of hospital charges themselves, or take the mentally ill out of care entirely. For the hundreds of millions of rural Chinese who remain poor, despite the economic developments elsewhere in the country, the self-pay system means that much needed care may simply be unaffordable. For acute psychiatric cases, the cost of an average two- to three-month in-patient stay in a state hospital ranges from 2,000 to 6,000 yuan (US$241 to US$723). This is similar to the annual per person income for an urban household, and two to four times more than the annual per person income for a rural household (Phillips, 1998). Besides cost considerations, rural residents with a mentally ill family member must contend with a shortage of basic out-patient mental health services. Since the start of the reform period in 1978, state spending on the rural medical service has dropped from 21% of the nation’s medical budget to 10% in 1991 (China Daily, 3 May 1994). The lack of follow-up and maintenance services, particularly in rural areas, contributes to the chronicity of illness and a pattern of repeat hospitalizations. There is also concern that it may contribute to suicides, which are high in rural China. The picture of an inadequate number of psychiatric beds with a low occupancy rate owing to unaffordability is one no one can be happy with, but it has become a reality in many areas of China. Although these statistics may paint a bleak picture of China’s current mental health care system, they do not tell the whole story. While so far inadequate,
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it is still important to recognize the strides that have been made, particularly in the last several decades, towards the development of a uniquely Chinese system of care. Political and economic forces, along with immense geographic and sociocultural diversity among China’s 1.3 billion citizens, have posed unique and difficult challenges to creating a sustainable policy of mental health care and will continue to demand creative solutions. That the Chinese government has made mental health a public health priority in recent years and is even searching for a nation-wide model, suggests an unprecedented willingness to acknowledge the problem of mental illness and the need for improvements in its system of care. This paper focuses on one such effort to bring mental health services to those who need it most, the chronically mentally ill and, in particular, individuals with schizophrenia. The “Shanghai Model” represents China’s first successful and longest-running attempt at a comprehensive system of psychiatric service, aimed at treatment as well as rehabilitation. The importance of this model may best be understood by examining the gradual development of mental health services in the context of China’s remarkable social and political history.
A BRIEF HISTORY OF MENTAL HEALTH SERVICES IN CHINA In traditional Chinese medicine, mental disorders were not considered separately from physical disorders, as the origins of both were thought to be due to an imbalance of the internal organs. Treatment of mental illness was aimed at restoring physiological function and balance; this somato-psychic approach to treatment persists to some degree among professionals and lay persons even today, and has been cited as a key reason for the late development of psychiatry as a separate field of study in China (Lin, 1985). The notion of specialized treatment for the mentally ill was introduced to the Chinese by foreign missionaries in the late 1800s, beginning with the establishment of the Canton Asylum for the Insane by John Kerr, an American physician from Ohio. Other asylums were built over the next several decades, but care was crude and mostly custodial in nature (Kao, 1979). Further developments in mental health were halted by widespread social disruption and war in the first part of the twentieth century. In 1949, on the eve of Liberation, there were only five mental hospitals (with a total of 1,100 beds) and no more than 60 psychiatrists for the nearly 500 million people in China (Ho, 1974). Lin (1985, p. 5) argues that “probably the most important factor responsible for the change of status of psychiatry and mental health in China has been the unprecedented emphasis placed on the health of the people by the government of the People’s Republic of China.” The health of the individual became
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symbolically intertwined with the health of the new regime, as the government sought to create a robust, motivated, and productive society, dedicated to the revolutionary cause (Heller, 1973). In the 1950s, the establishment of psychiatric hospitals in major cities formed the basis of the treatment of the mentally ill and the training and education of specialized psychiatric personnel. However, it became apparent that reliance only on hospital treatment would hardly meet the mental health needs of the nation. Revolutionary zeal alone could not overcome the severe shortages in trained staff, inadequate facilities in most areas, and limited economic resources. In an attempt to meet the immense health needs of the poor and uneducated peasants and workers, strong government leadership and enforcement sanctions were employed, along with the wide-scale mobilization of nonprofessional treatment teams with minimal education and training. However, in contrast to the Western emphasis on self-actualization and quality of life, psychiatric treatment in China privileges the collective good and aims to help the patient to fulfill his prescribed role in society. Since 1949, political priorities and public security concerns have exercised decisive influence over the medical definition, social perception, and treatment procedures of mental illnesses in China. The tumultuous period of the Cultural Revolution ironically witnessed the most extreme forms of authoritarianism in these respects, when forms of deviance, including mental illness, were treated as “political errors” to be eliminated. Psychiatric hospitals were closed and the mentally ill were subjected to repression and political re-education. Though such brutal treatment of the mentally ill no longer occurs, mental illness remains largely associated with deviance and social disruption. Political and economic factors also continue to shape the social perception of mental illness and the demand for mental health services. Deviant behavior is treated as a criminal offense, and persons with the severest forms of mental illness such as schizophrenia tend to undergo in-patient hospitalization against their will. Alcoholics and drug abusers, some of whom may be considered victims of China’s post-reform social and economic changes, are being involuntarily confined in psychiatric hospitals with the help of the local police. The focus of care is on preventing chronic patients from causing social disruption. Thus social control is valued in the care system, and there has been inadequate attention to patient rights and their protection. Only in November 1999 did the Chinese government officially designate mental health problems to be among the most important public health problems facing the nation, and prioritize reform of mental health services as a goal (Yin, 2000). Among the problems identified by the Chinese Ministry of Health, suicide and schizophrenia were ranked as the most costly and the ones requiring most attention. In addition, for the first time statements were made to the effect that patient rights must be respected. The government has promised to increase resources for the mental health care system, and has requested evidence-based plans for allocation of funds.
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Crafting a Nationwide Mental Health Policy In the 1980s and 1990s, several comprehensive mental health plans were developed by the three ministries most concerned with mental health issues: civil affairs, public health, and public security. Although these documents produced the first major assessments of the state of psychiatric care and laid out guidelines for future directions, they failed to provide pragmatic suggestions for how recommendations could be implemented, and as such did little to improve the reality of mental health services. Advocates for the mentally disabled cited a number of difficulties in crafting a nation-wide mental health policy. First, the vast territory of the nation, coupled with enormous geographic, demographic, economic, and cultural diversity, have contributed to the uneven development of health care systems. Urban areas, particularly those located along the wealthier South and East coasts of China, have more established infrastructures and greater material and human resources in contrast to rural areas. Distant areas with large proportions of ethnic minorities are especially disadvantaged. These factors make a centralized uniform system unworkable as China attempts to expand mental health services. As a result, recent policy discussions have focused on “regional ization”—that is, promoting mental health services through the collaboration of geographically and demographically similar provinces. A second problem is a shortage of trained mental health professionals, which has significantly impeded the development of a more comprehensive concept of psychiatric rehabilitation. There are some 13,000 physicians who work in mental hospitals, but only 2,000 or so are fully trained psychiatric consultants. Psychologists are few in number and mental health nurses are often middle school graduates with a very low level of training. There are virtually no social workers (Lee, 1999). The influence of Soviet psychiatry is still seen in medical training as psychiatrists and nurses are trained in a disease model that is predominantly biological, with little to no discussion of psychosocial factors that may influence risk, prognosis, and long-term course of illness. Focusing largely on psychosis, and schizophrenia in particular, treatment approaches have traditionally emphasized reducing positive symptoms through the use of medication, with the goal of returning the individual to live peacefully within the family and community. Psychiatrists do not receive formal training in psychotherapy or counseling and as such, have not played a dominant role in the provision of such services to the public. Mental health professionals, in general, have failed to acknowledge the distinction between psychiatric symptoms and psychosocial dysfunction, leaving a theoretical and practical vacuum in the Chinese concept of rehabilitation. The lack of formal training programs in psychiatric nursing means that the vast majority of nurses have no academic understanding of psychiatric illness, and, as a result, bring into the hospital setting popular misconceptions, fears, and
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anxieties about interacting with the mentally ill (Pearson, 1995). Nurses in psychiatric settings are largely charged with caring for the physical needs of patients and controlling their behavior only, rather than engaging patients in rehabilitative or therapeutic activities. Besides doctors and nurses, the corps of other workers typically engaged in mental health practice in the West—occupational therapists, trained psychiatric attendants, etc.—do not have a strong presence in the Chinese system. Setbacks in the development of clinical psychology and social work fields can be traced to a temporary ban imposed in the 1950s on the social sciences and the destructive effects of the political campaigns. Although the social sciences are now becoming a legitimate field of inquiry, it will be some time before these professions will be able to have a significant impact on mental health service delivery. A third important factor influencing the development of mental health services in China, and elsewhere, is the shrinking of available economic resources. On the whole, social and economic changes and reductions in the size of the state’s commitment to social welfare have constrained the evolution of community-based psychiatric rehabilitation programs in China. A decrease in government subsidies has created a need for public hospitals to become more self-supporting by raising hospital costs, admitting more self-pay patients for longer stays, and offering more expensive, but not necessarily effective, technologies. Policy changes permitting private hospitals will likely lead to a proliferation of low quality institutions with poorly regulated medical and therapeutic environments, as took place in Taiwan. Although developing ambulatory care services could reduce the financial burden on families who cannot afford prolonged hospital stays, doctors are increasingly reluctant to participate in such experiments whose success reduces the income of the hospital, upon which their salaries (in the form of income-based bonuses) are dependent (Phillips, 1998). Yet it is clear that care in the community is preferred by patients and their families as it is less costly, less disruptive, and enables greater participation in social life. The Shanghai model evolved in response to the changing political, social, and economic environment of the last 43 years. Developed in 1958, its current incarnation hints at the successes that can be had from implementing a regionalized approach to mental health care. That said, it is an urban model that takes full advantage of its material resources and corps of trained mental health professionals to provide a comprehensive program of psychiatric rehabilitation that may not be generalizable to other, less resource-rich areas. On the positive side, the last few years have witnessed the organization, in large cities, of family support groups that provide education, offer mutual support, lobby for higher quality services, and organize collective concern with reduction of stigma, which remains a major and stubborn problem. Over the years model rehabilitation programs have developed in a small number of Chinese cities and at least one rural area. In recent years, however, these programs have
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come under greater pressure owing to the economic reforms which have reduced state support, made ailing state institutions less willing to accept back-to-work disabled workers, and turned the attention of hard-pressed hospital administrators concerned with the financial viability of their units away from financially draining community services. The other positive influences include the emergence and refinement of an indigenous Chinese diagnostic system, based upon research by Chinese researchers, as well as on ICD and DSM systems; the recent development of board examinations to raise and monitor the quality of consultant psychiatrists; and a few outcome studies that roughly demonstrate the cost effectiveness of psychosocial rehabilitation efforts. A decade and a half of work on a new mental health law has not yet produced a final version acceptable to the government, but progress is being made slowly and steadily to raise governmental awareness of the importance of chronic mental illness and to develop policy coordination among the relevant ministries at both national and provincial levels. Inclusion of chronic mental illness by the influential Chinese Federation for the Disabled as one of the authorized forms of disability in China, a recent development, should bring greater resources to bear in future. The implementation of reform of China’s health insurance has created greater financial uncertainty for patients and their families in the short run, but should improve conditions for the disabled in future. This report focuses on one model rehabilitation program for patients with chronic mental illness: the Shanghai model, as it is known in China. We select this model for several different reasons. It is the oldest and best known and most thoroughly documented. It is the one that one of us (X. Y.) has worked in. Three of the authors (X.Y., J.K., and A.K.) visited one of the Shanghai model’s most innovative components—a family psychosocial rehabilitation project—in 1998, 1999, and again in 2001, and during these periods conducted a limited evaluation. The impression we came away with was quite positive. Finally, we seek to demonstrate support for this model at a time of social and economic retrenchment in health services, and when its future is by no means certain. There is a real possibility that this important program may not be sustained in the new era of privatization and globalization, with its different social, economic, and even moral priorities, an outcome the authors of this chapter believe would be a terrible loss.
THE SHANGHAI MODEL The city of Shanghai is the largest in China, with an area of and a population of nearly 16 million in 2000. The metropolis is largely urban, composed of 12 urban districts and nine rural counties. Following the organization of other Chinese cities, Shanghai’s urban setting is divided into districts, which in turn are administratively subdivided into 132 “streets,” and further subdivided into 2,783 “lanes,” while the rural counties are divided into 230 townships and subdivided
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into 3,461 villages (Zhang et al., 1994). Organizing mental health services at the municipal, district, and community level, the so-called “Shanghai Model” is currently the most widely-respected model of community-based rehabilitation in China. This three-tier system was first conceived in the late 1950s by Hsu Zonghua of the Shanghai Psychiatric Hospital, and later led by Xia Zhengyi and another generation of psychiatrists. Based on the results of the first mental health survey of the 25 districts and counties of Shanghai, Dr. Hsu began opening psychiatric clinics in the primary care facilities of each district. Locating psychiatric clinics in the primary care facilities of each district allowed treatment to be administered on an out-patient basis, reserving psychiatric beds at the central hospital for more acute and severe cases. In 1956, two years prior to the First National Congress on Mental Health in Nanjing, Shanghai established the first “three-person leadership group” for the management and organization of mental health services at the local level. This group was composed of representatives of the Municipal Bureaus of Health, Civil Affairs, and Public Security, and was later implemented in other large cities to serve as the basic unit for organizing community services for the mentally ill at the municipal and district levels (Tian, Pearson, Wang & Phillips, 1994). Today, hospital-based services at Shanghai’s municipal and district levels are exceptional, compared to the average Chinese city. By the mid-1990s, Shanghai had a total of 8,500 psychiatric beds in 50 mental health institutions, which translates to 6.5 psychiatric beds per 10,000, making Shanghai the city with the highest staff/patient and bed/patient ratios in China (Phillips, 1998). Even with these figures, the sheer number of psychiatric patients makes it clear that reliance only on hospital treatment would hardly meet the mental health needs of Shanghai, much less other cities in China with fewer institutional resources and trained health professionals. Efforts to move beyond in-patient services led to the development of a large community mental health network to provide follow-up and rehabilitation in the community, without which the hospitals would become overcrowded with chronic or relapsed patients. Community followup occurs at primary-level hospitals and includes out-patient services, medical monitoring, and home visits if necessary. Rehabilitation is implemented through guardianship networks consisting of groups of trained volunteers (retired workers, family members, community administrators) who supervise individual patients, maintain treatment schedules, and provide family support. One hundred eighty-four work therapy stations, mainly located in urban areas, also provide rehabilitation services, giving 4,628 clients the opportunity to work and to receive an income, in addition to obtaining treatment, education, and psychiatric care (although the breakdown and closing of state industries as well as rising unemployment make this option more difficult to maintain). Today, this community network provides services to approximately 60,000 individuals, representing nearly 40% of the population of seriously mentally disabled residents (Zhang et al., 1994). All told,
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approximately 800 psychiatrists and 1,800 other mental health workers provide services to more than 160,000 seriously mentally disabled individuals in the city. A more detailed description of these community-based programs is provided below.
Community Follow-up Programs Psychiatric specialties set up in 99% of the 341 primary-level (street or township) hospitals provide follow-up treatment on an out-patient basis. Treatment is provided by physicians from other departments who receive three to six months of psychiatric training and work part-time in the psychiatric service. The majority of patients are stabilized on medication and attend the clinic on a monthly basis for maintenance services. If they miss their appointment, physicians are required by the city mental health regulations to make a home visit within the next month to assess the patient’s status. The primary focus of these community follow-up programs is to monitor the effects of medication and educate the family about their proper use. In 1998, there were 86,848 patients registered in these programs. During that year, patients made 164,991 clinic visits and clinicians made 181,524 home visits (City of Shanghai, 1999).
Mental Health Services in Factories Workers for many medium- and large-sized enterprises in China live in housing provided by the factories, thereby creating smaller communities in which a range of services are provided. These work-units typically have health clinics; some of the larger enterprises have their own on-site hospitals. Doctors are sent to receive specialty training in psychiatry and, upon completion of their training, are responsible for opening specialty out-patient clinics, providing follow-up and maintenance services on the factory floor, making home visits, setting up rehabilitation workshops in the factory, and establishing guardianship networks. Zhang et al. (1994) estimate that these types of services have been established in 924 factories. According to their figures, factory-based clinicians made 21,089 follow-up visits and 6,389 home visits to 8,486 mentally ill patients in 1989. Again, this part of the system is under simply enormous pressure because of changing economic conditions that are transforming China’s state industries. Large factories in the public sector are not performing well; many are near bankruptcy. The response includes downsizing some and closing others. There is no incentive in the private sector to develop similar mental health services.
Guardianship Networks Guardianship networks are essentially “volunteer” committees of neighbors, retired workers, primary care staff, and community officials who act as nonprofessional
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case managers, monitoring the care of patients in their communities. By 1994, these networks had been established in 58% of the lane and village committees in the city. In 1989, there were 52,484 members of the community participating in these networks to supervise the care of 51,232 clients. Follow-up included nearly 235,000 home visits over the year (Zhang et al., 1994). A team of primary care staff and more than 60,000 volunteers was mobilized to establish a city network that covered more than 80,000 patients in the whole region. These networks monitored 90.6% of the population in 1986 (Zhu & Qu, 1997). Network members are typically appointed by officials from the lane committee and are not paid, but often receive a small subsidy for the services they provide. These services include providing help and support to clients and their families, encouraging compliance with treatment and medication regimens, managing violent and disruptive behaviors by the clients, and providing basic psychiatric education to the community about mental illness. In some networks, each patient is assigned one or two individuals who serve as primary guardians; in other networks, all of the guardians collectively monitor the care of all of the patients in their jurisdiction. On a monthly basis, members of each network meet with physicians from the county or street hospitals to discuss the status of patients in their locality and strategies for handling difficult patients. Members meet with families and on public holidays check in with them to make sure that patients will not become a problem for the public. In cases of psychiatric emergency, guardians may take the patient to the local hospital, where a relationship has already been established with the director of the psychiatric out-patient clinic. While network members have included retired men and women, the new economic reality attracts such surplus labor to the private sector, so that this aspect of the system of care is also changing.
Occupational Therapy Stations: Welfare Factories Central to the socialist view of welfare is the notion that citizens have a responsibility to contribute their labor in exchange for welfare benefits (Pearson, 1995). This enduring emphasis on work is reflected in the central role of occupational therapy in the Shanghai model of community-based rehabilitation. By 1995, a total of 184 rehabilitation workshops had been established to provide occupational therapy and employment opportunities to over 4,600 individuals with various psychotic disorders (Zhang et al., 1994). Administered by the community welfare departments of the local offices of the Ministry of Civil Affairs, management of these welfare factories is provided by community administrators, retired workers, and non-psychiatric health care workers. Start-up funds and salary for the station director are typically provided by the welfare department of the urban district’s government, which also registers the station as a welfare enterprise. National regulations promulgated in 1980 stipulate that if at least
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50% of a factory’s workforce is disabled (including mental retardation and mental illness), it can operate completely tax-free (Wang, 1994). Given that taxes on state firms are 55% of profits, this tax exemption serves to increase the economic viability of these welfare factories. When clients are approved for participation in rehabilitation workshops, the responsibility for psychiatric follow-up is transferred from the community follow-up program to doctors affiliated with the work station. Individuals who still have acute psychiatric symptoms or who are unable to sustain any type of employment are assigned to the occupational therapy workshop for rehabilitation. Occupational therapy typically involves participation of approximately four hours per week, during which time patients engage in secondary processing for local factories (e.g., packaging consumer products, inspecting and removing defective products, simple assembly). Participants in the occupational therapy program also participate in recreational activities and psychosocial education. Clients who have no acute symptoms and who maintain some ability to work may be hired as employees of the factory to work for six hours a day, six days a week, doing secondary processing tasks appropriate for their level of functioning.1 These clients receive an income based on the economic value of the products produced by the workshop, which helps improve their sense of self-worth and decreases their dependency on family members for financial support. In addition to these welfare factories, enterprise-based workshops also provide job opportunities for the mentally ill. The main difference is that the latter are housed in “regular” factories that were created to accommodate mentally ill employees who could no longer fulfill their previous positions. The workshops were created in an era when these enterprises provided a wide range of social welfare benefits to their employees and could not fire a mentally ill worker who was no longer productive (Luo & Yu, 1994). Both welfare factories and enterprise-based workshops have become more difficult to sustain under the new economy with the shrinking of the state sector.
Other Services Since 1990, a number of other forms of community-based psychological counseling services have also been introduced in Shanghai—mental health and crisis intervention telephone hotlines, psychological self-help groups, and governmentsponsored civic groups promoting family education about treatment and strategies for coping with the mentally ill. The media in Shanghai occasionally featured mental health family support groups for those with a mentally ill patient. 1
In the mid-1990s, the work week for all Chinese was reduced by the government to five days.
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Shanghai Psychosocial Rehabilitation Association The Shanghai Psychosocial Rehabilitation Association was established in 1992. At present, there are four staff: two doctors and two nurses. Four hundred forty-two families and 57 work units belong to the association; more than 600 patients are registered with the association. The association does not give routine medical care; rather it provides health education, social support, social services, and community outreach. Each year there are three workshops (eight sessions over a period of two months) for family members. The workshops provide basic information about psychiatric diseases and treatment; topics include symptomatology, relapse, compliance, drug effects, legal issues, health insurance, etc. Families are also taught techniques for working with patients. In the year 2000, a total of about 2,000 people took part. A survey of family members showed that virtually all of them were satisfied with the workshops. In addition to workshops, the association has published pamphlets and books, including an impressive collection of patients’ stories of their illness and treatment experiences. Family members may bring patients for education and advice. Consultation also takes place by telephone and letters. Assistance is given with questions involving health insurance, employment, school problems, marriage and family relationships, and discrimination. Awareness-raising events include public assemblies, visits to work units, and training of factory doctors. Sometimes staff visit work units or street committees to speak about particular problems on behalf of patients and families. Specific advice is given to family members about how to pay medical bills, especially for those who are unemployed. The association may function as a social service agency, helping clients communicate with the appropriate government agencies responsible for health insurance and assistance to the unemployed. The association has put on occupational training programs, such as computer training, to assist with employment opportunities. In an effort to protect the rights of their clients, staff are involved in advocacy efforts and educate the general public about the laws concerning mentally disabled persons. The Association does not receive any government funding. Staff salaries are paid by the Shanghai Mental Health Center, but the Association has no operating budget. Its only sources of income are from small membership fees (12 Yuan per year) and from private contributions. One pharmaceutical firm, Jannsen, a branch of Johnson & Johnson, provides funds for patient and family meetings. In return, the company is allowed to provide information about their new antipsychotic drug, Risperidone, to members. Inadequate financial resources are considered by the staff as the main problem of the Association. Fortunately, the building they are housed in, which formerly was the residence of Dr. Hsu Zonghua, has been donated as a gift. One member of the association is a former President of Shanghai Science and Technology University and also Deputy Director of China’s National Federation for the Disabled. He has proposed assistance from the Federation with access to
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schooling, employment opportunities and also payment of medical bills for the unemployed mentally ill. It was pointed out that this is a potentially crucial contribution of the association to the improvement of the conditions of the mentally ill in China. In 1998, 1999, and again in 2001, Xu Yifeng, Arthur Kleinman, and Joan Kleinman interviewed family members and patients who are members of the association. These preselected informants were unambiguously positive about their experiences with the association. For example, one patient with schizophrenia reported how staff had helped him and his family understand what to expect from the course of the disease and the medications. He also told how the association helped his family deal with interpersonal problems in the neighborhood that had resulted from his illness. On one occasion for another patient, the staff visited the local block committee to help the patient and family negotiate some social difficulties, including a quarrel with neighbors. The mother of a schizophrenic son explained how the association assisted them in helping the leaders of the work units to understand why an expensive medicine was needed. She also noted how the staff represented their interests with the municipal health insurance bureau in a way that was much more effective than they themselves could have done. This resulted in increased financial supports for treatment. Another family member spoke about the importance of the day-hospital that is run by the association for 34 patients. In her case, it provided a setting for her son to occupy his time with others when he no longer had a job or access to school. One patient with chronic illness likened the association to a bridge between laypersons and the government. The association could accomplish things that the patient and family could not, such as making claims to government agencies and helping with legal matters. Other patients emphasized the psychological support provided by the association. One man with schizophrenia told how participation in the association’s programs gave him the confidence to identify himself to his co-workers as mentally ill. Others mentioned the great value of a public demonstration put on by local government and the association in which kites made by patients were flown by the patients as a symbol of their hopes and aspirations. Rather than emphasize the negative aspects of serious illness, this widely publicized activity portrayed patients in a positive way, aimed at changing popular opinion. All the people interviewed described strong discrimination associated with their experiences of mental illness. One patient said that after he developed mental illness, he was not allowed to continue in school. He also could not find work, because the work unit he was associated with “turned their back on me.” They gave him 600 Yuan per month as settlement. Another patient said that it was very important for the leaders of his work unit to learn why he had to continue medication even though his symptoms had improved. The mother of a patient mentioned she could not retire because her son was unemployed and she had to pay the high cost of care. She also observed that the new generation medications were
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very costly and there were no inexpensive generic equivalents available. The very fact that patients and families were so impressive in speaking of these and other problems faced by the mentally ill indicates that they felt supported by the milieu of the association to be free to express deeply held opinion, not so common an experience. Three brief descriptions of patients and families interviewed in 1999 should help illustrate the kinds of contributions this association has made.
Case 1 Zhang Penglai2 is a 29 year old man with schizophrenia. His disease emerged when he was 23. He became acutely paranoid in a setting of work problems and developed hallucinations and confused thinking. He was hospitalized for eight weeks, and he experienced three subsequent deteriorations with brief hospitalizations. His parents and he had been active members of the Association for 18 months when we interviewed them. During that time, he had experienced neither acute psychotic symptoms nor debilitating negative symptoms, and had not required hospitalization. Zhang was still employed as a skilled worker in the electrical department of a large factory. He attributes this opportunity to continue working to the Association: They [his work-unit leaders] had had enough after my fourth hospitalization. They refused to accept me back to work. It was a big problem. I had nothing else to do. Lost my confidence. And my family’s finances were hurt because I could not get a full salary or bonus. The Association’s leaders visited my work-unit. Our leaders were very negative. But the Association visited several times. They brought along several friends who are active in the Shanghai Municipal Government. They brought in psychiatrists and an educational video as well as medical literature. Eventually they wore the resistance down and I was accepted back to work. Even then there were problems. At first, my work mates treated me like I was retarded and irresponsible. They paid me to stand around and do nothing. They actually feared that I would do something crazy or just forget how to do the work and create a hazard. Again, our friends at the Association made things better. They actually sent a retired nurse to spend each day for several weeks checking up on me. She taught my co-workers how to supervise my medication. So that they were reassured I was taking the medicine. She explained that schizophrenia is not mental retardation. I hadn’t lost my ability to think. Slowly, I was allowed to do more and more, finally performing my job as before my illness. Since then I haven’t had any serious problems. Now the man responsible for running my unit explains to our leaders that they are satisfied with my work and know how to care for me to help my illness. I don’t feel discriminated against. In fact, when I asked a girl from the work-unit’s school to marry me, and her folks got frightened, my work-mates 2
Pseudonyms are used for all persons in the case descriptions.
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Doris F. Chang et al. visited their home and explained that I was a good worker and a reliable person. They explained about my illness and told her parents they would make sure that my illness was controlled. The Association’s leaders also visited, and that was a big help. I understand that in the past I would stop taking my medicine and make my illness worse. I didn’t do it on purpose, but because the illness used to make me frightened that the medicine was poisoning me. So I would stop. But now just about everyday at work my colleagues go over my medication with me. I feel more secure.
Zhang’s father, a 60 year old retired cadre, supported his son’s statement: It was truly terrible when he became ill. People treated us as if his illness were contagious. They kept away. The work unit’s bosses were especially bad. They treated my son badly. They insulted me, and made me feel as if I had put on a political cap in the Cultural Revolution times and was to be treated like a ghost. I got furious. But I couldn’t do anything. They wouldn’t listen to me. I told my wife I was thinking of committing suicide the situation was so bad. But then we heard about the Association. They have been so helpful I feel like I should get on my knees and kowtow to them. I can’t tell you how much it matters to feel like there is someone who understands and can help you. Without their efforts he [Zhang Penglai] would be unemployed. Our financial situation would be terrible. There would be no wife. They talked with our neighbors, and made them see that they were prejudiced and discriminating against us. That stopped right away. How they got my son another chance at his job was a miracle. And they interceded, like his work-mates did, with my daughter-in-law’s family, who were uncertain and fearful. Sometimes in the past he would get worse, stop the medications, become threatening. We didn’t know what to do. Now it’s different, entirely different. We feel that he is being supervised. If there is a problem with symptoms or medication, there are lots of others who become aware and help. So far it has worked. The situation before and after the Association got involved is like night and day.
Zhang’s mother, a retired accountant, reflected on the issue of stigma: My husband and I were as ignorant about this problem as our neighbors. We really didn’t know what to expect. We feared the worst. We felt like it was our fault. We thought our family would fall apart. We feared that he would be all alone after we died. No one would help him. People were really disgraceful to us, and we were frightened, confused, and so upset we made him worse. I now realize that this is common. Here [in the Association] you meet other families. Many of them. Their experiences are similar. You know they were in the same awful situation. Parents cry when they tell each other stories of how their children have been abused because of mental illness and the fear and ignorance of friends, neighbors, even family members. I think it is the educational activities of the Association that is most important. You can’t do this yourself. No one listens to us. They think we are crazy too. Now we have stories in the newspaper and magazines and on TV. There are educational
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brochures and books to give to people, to make them understand. The books are really helpful. I think I had come to give up hope. I thought nothing more could be done. The illness seemed untreatable. But a lot of it was organizing the treatment more effectively. Making sure he took the medicine. Getting him back to work. Helping him find a wife. Changing the moral feelings (renqing) in the neighborhood and at work. Education has done that. The Association is great in that way especially.
Case 2 Wu Lingyen is a 19 year old who had developed psychotic symptoms following a stressful period of school exams, one year before our interview. She is a chubby young woman with a sad expression. After spending three months in a psychiatric hospital, she entered community care with the diagnosis of schizophrenia. She has periodically complained of paranoid symptoms, and even when we interviewed her harbored suspicions that neighbors were out to harm her. Her mother, a junior middle school teacher, has taken early retirement in order to take care of her daughter. Wu Lingyen is in a kind of limbo. Although she passed her entry exams for higher education, no school has accepted her. She has no employment. Her days are spent either at home or at the Association, where she has taken a course on computers. Shortly after she returned home from the hospital, her boyfriend left her and her girlfriends began to drop away as well. She feels, as a result, lonely and isolated. She has had suicidal thoughts but has not made an attempt at taking her life. Wu Lingyen describes her family life as tense. She frequently quarrels with her mother and with her father, who is a salesman who frequently travels throughout East China. She denies that she has a mental illness, and questions whether it is necessary for her to continue taking antipsychotic medication. She describes feelings of hopelessness and agitation. She also reports sadness. Periodically, she berates her mother for treating her like a sick person and for controlling her life. Lingyen is unclear what purpose the Association serves: “I am well and have no need of their care.” Her mother cries when she repeats the history of Lingyen’s illness and their attempt to cope with it: This child is very troublesome. She fights with us, sometimes hitting me and her father. She accuses us of poisoning her food. I didn’t know what to do. She wouldn’t continue the medication. She doesn’t like to return to the hospital to see the psychiatrists. She has no friends, no school, no work. I fear for her future. When I am too old who will take care of her? Her boyfriend ran away from her, so did her girlfriends. She is pitiful. The Association has saved us. They try to convince her that her illness is real and that she much continue the treatment. They counsel us on how the illness works, what it does to her, and how it should be treated. They visit our apartment, and encourage
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Doris F. Chang et al. Lingyen to take courses and learn to be a secretary. They teach us how to deal with her when she refuses the medication. At first we believed her that perhaps neighbors were trying to poison her. But we now know this is part of her illness. So we don’t go along with her delusion. I have learned more about this illness from the Association than from the hospital. I am fearful about the future, but at least I know that we can rely on the Association for education and support. The Director is so forthright, and she is trustworthy and helpful. When she speaks to my daughter she calms down. She listens to our complaints and makes good suggestions for things we can do. My husband blames me and gets angry at our daughter. He can’t control his emotions. But the Director explains to him what he must do to make things better. Meeting the other families has helped, too. Before I thought only we have this trouble. Now I know others share the same problems. I hear what they do, and learn from that. My daughter learns too. The computer class has been good for her. She had given up and this makes her understand that there are possibilities.
Case 3 To visit the Chen family, you must walk up a flight of stairs from the street into a grey brick building and enter a large meeting room. Through that room you come to a door opening on a narrow staircase. Two flights up and you pass into a single room 15 feet by 20 feet. In this room live the Chen family. The parents are in their late 50s; both are retired. The two sons are in their early 30s. The elder son, Chen Zhiwei, has chronic mental illness and is unemployed. The younger son, Chen Zhiping, is a small businessman who travels frequently and is seldom at home. The room is packed with beds, chairs, a small table, and boxes piled on boxes up to the high ceiling. Chen Zhiwei has been ill for four years. Even before his first episode of psychosis, however, he demonstrated peculiar personality traits such as exaggerated self-importance, unwillingness to socialize, hypercritical attitude and a tendency to withdraw into sullen silence that at first was ascribed to moodiness and later to a more general negativism. Chen Zhiwei was never a very good student and went to work as a construction worker before graduating from high school. He has never had good friends or a sexual relationship. He spends most of his time at home, lying on his bed or pacing up and down in the apartment. His parents have resigned themselves to providing basic supportive care without expectation of recovery. His father smiles wanly and explains: As long as he is reasonable and talking, it is acceptable. Only when his thoughts and speech are confused do we get frightened. It is a struggle to get him to take the medicine or visit the clinic. He is not comfortable, he says, in the Association so we go ourselves. When we go out, one of our neighbors, a retired policeman, comes in and sits with Zhiwei and watches over him. We never leave him alone anymore. Earlier he ran away and got into trouble. He also once started breaking things here.
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He is unreliable and unpredictable. One day he seems OK, the next he is under the covers talking to himself. The Association has been good for us. We get out and learn about his illness. What to expect. How to manage him. We can bring specific questions to the staff. Sometimes there are lectures. Talking to the other parents is helpful. We feel less isolated. There is a lot that family members share. We used to think it is best if Zhiwei stays in our room. When he goes out there can be trouble. Children may shout at him. Families avoid us. He may hurt himself. We fear that people will make him feel ashamed. Better to stay here. But in the family discussions we are learning different ideas. It is a mistake to hide. We should be honest and let others know the truth about his illness. We never spoke about it before. But now we try to. We explain to neighbors, and once we had the Association Director come to a block committee meeting and explain to them what has happened to our son. It is better that way.
Zhiwei’s mother had very little to say and seemed anxious about our presence. Several times she got up to speak to neighbors who came to the door to inquire who we were. But eventually she spoke up as well, when her son had gone out for a walk with her husband: It is a heavy burden. It takes all our effort. But we do everything we can to help our son. Nothing can cure him and make him like he was before. So we try to keep things calm. We don’t want him to get worse and go back to the hospital. Those were the bad times. The Association keeps up our hope. They can’t change the situation. But they are thoughtful and care about him [Zhiwei]. I have a mentally ill sister so I know this is a terrible problem for a family. The Director of the Association is very good at giving advice and calming our fears. This is a burden we will carry until we die. But now we feel there are people who can give us some help. Just talking with them makes me feel less uneasy. I trust them and confide in them. And now we are learning to be assertive about this problem, which, after all, is a disability like other serious illnesses. We need not feel embarrassed. Maybe we can help others with the same problem because of all the hardships we have had to face.
After awhile father and son returned; we talked for a few minutes and departed. We felt a noticeable sense of relief at getting out of the hot, stuffy, confining space. Outside on the street several neighbors questioned us. They seemed quite suspicious of our presence. One said that foreigners should not be visiting people like Chen Zhiwei, who was mentally ill and unpredictable. But another neighbor contradicted this point, saying that the neighborhood should learn more about mental illness and how they could help the family. He mentioned a visit from the clinic’s doctor—shortly after one of Chen Zhiwei’s hospitalizations— that had helped people learn what to do when he was acting confused and angry. Another voice chimed in that the family was a good one and that this was a serious trouble for them. At the Association, the staff explained to us that it was proving difficult to control Chen Zhiwei’s negative symptoms and that maybe the best they could do was to help his parents get out of the apartment for a rest
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from time to time and make sure the neighbors were less troublesome. On one occasion, we learned, neighbors had tried to get the family to move to another location, saying that Chen Zhiwei scared them and that he was dangerous. The Association would keep an eye on the situation and had already worked with the block committee to make the situation less tense. The Director of the Association reported that Chen Zhiwei was similar to about one out of three schizophrenia patients on their rolls: unable to overcome negative symptoms and therefore seriously disabled. She said that as much as they would like to provide the family with an uplifting message, it was better to admit honestly that this was likely to be their situation for some time to come. Nonetheless, the Association could still assist the family and fight stigma. They were still trying to get this patient to the level where he could spend part of the day in a sheltered workshop where he could socialize with others, do work that gave him a sense of accomplishment, and relieve his parents of having to watch him all the time. In fact, the retired policeman who relieved Chen’s parents so they could shop and get some relaxation was a member of a guardianship network that had been difficult to assemble in this case but hopefully would function better in the future. In this case, the Director pointed out, it is hard to balance the interests of the patient with those of the community. In China the latter always came first. Yet, it was important for patients like Chen Zhiwei to have their rights as patients and human beings advanced. How to do this for the most seriously mentally ill was not something the Association or the professionals were completely clear about. But times were changing in China in a way more favorable to this objective so that even those whose chronic condition could not be much improved might still find an environment that was more supportive of them. That was something the Association also saw as an objective, she said. With the exception of the satisfaction survey mentioned above, the association has not conducted systematic evaluation studies, hence in the strict sense, we cannot describe the actual cost-effectiveness of this component of the Shanghai model. But what we have observed at several different times over a three-year period has impressed us. The Shanghai Psychosocial Rehabilitation Association strikes us as an important program that has had significant influence of a practical nature to advance the interests of the mentally ill and their families in China’s largest city. It is telling that such an impressive program has not been generalized even within Shanghai itself and that its very financial existence after nine years of operation remains precarious.
ASSESSING OUTCOMES: EVALUATION OF THE SHANGHAI MODEL The multi-tiered Shanghai model has been promoted as an appropriate model for mental health care in China since 1980. In a prospective controlled trial
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undertaken between 1987–1989, Zhang et al. (1994) reported that work therapy stations and guardianship networks contributed to significant improvements in the condition, symptoms, and social functioning of schizophrenia patients. Rooted in a strong sense of family commitment, social responsibility, and the importance of work in Chinese society, the model’s success was attributed to the fact that it is congruent with the sociocultural conditions of the communities it assists. Such community programs, implemented in cities such as Shenyang, Nanjing, and Suzhou, have been praised for mobilizing community resources effectively to achieve the twin goals of supervision and rehabilitation. Given the impetus to quickly develop cost-effective strategies to meet the enormous need for services, it is not surprising that attention and resources have only recently been devoted to researching the effectiveness of these programs. At present, only a handful of studies have systematically examined the effectiveness of the community-based programs outlined in the Shanghai model. A review of the research available in English suggests that there are a number of methodological problems that make it difficult to interpret the results: the experimental group was not paired with an appropriate matched control group, selective or unclear inclusionary criteria were employed (i.e., patients with “rehab potential”), evaluation of outcome was not conducted by ‘blind’ raters, subjective ratings of outcome were used, economic effects were not systematically assessed, and medication regimens were not held constant throughout the experimental period. Despite these limitations, the available data suggest that community-based programs such as those outlined above are significantly more effective in reducing psychiatric symptomatology and increasing social functioning, daily living skills, and occupational functioning compared to control subjects (see Xiong et al., 1994). Even with their methodological problems, these results confirm other findings that programs which combine medication with active rehabilitation produce better outcomes than medication alone (Falloon, Held, Roncone, Coverdale & Laidlaw, 1998). Such programs that involve skills training and provide opportunities for meaningful work and socialization are consistent with socialist welfare models. In addition, community rehabilitation programs are thought to be less costly for clients and families over the long term, and provide opportunities for improved quality of life, compared to prolonged hospital stays.
Current Constraints Despite its potential for making mental health care more accessible to the public, massive transformations in China’s economic system have deeply affected the sociocultural conditions that would allow the Shanghai model to take root throughout China. The structure of family commitment to the mentally ill is being undercut by increasing costs of hospitalization and treatment. The concept of volunteerism, on which guardianship networks are built, has less appeal in a less
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authoritarian and more market-driven society. The welfare safety net guaranteeing work for the disabled is weakening. As for-profit enterprises lose incentives to employ disabled workers, the chronically mentally ill lose both employment and opportunities for occupational rehabilitation. State industries, under great pressure to be profitable, have decreased orders for products produced by welfare factories. In short, the psychosocial and socioeconomic bases for rehabilitation are disappearing, and the definition of what constitutes the well-being of the chronically mentally ill is less than clear. On the more positive side, pharmaceutical manufacturers have donated funds and drugs to the mental health care system in a number of cities, including Shanghai. The Shanghai Psychological Rehabilitation Association has established a foundation to fund programs (e.g., including psychological education for families), and it has successfully solicited funds from the private sector. Owing to globalization, more attention is being paid by the psychiatric profession to the rights of patients, including informed consent and voluntary participation in programs. Recent reports from China suggest that improvement is partial and there are still inadequacies and abuses, but, overall, the situation is improving. In light of these changes, it is important to consider what aspects of the Shanghai model would have to be revised, or what aspect of government policy would have to be reconsidered in order to make the model sustainable and generalizable in China today. Clearly, economic reforms are changing the motivational structure that previously sustained social welfare programs in the community. The social burden of care will necessarily remain concentrated in the family, yet in order for families to successfully care for mentally ill members, responsive therapeutic services, aligned with local goals and definitions of functioning and quality of life, must be made available. Government policy and financial resources should reinforce both rural and urban family commitments to caring for the mentally ill by giving families the opportunity to obtain social benefits in return for carrying out the tasks of supervising, educating, evaluating, and rehabilitating. As Zhang et al. (1994) point out, with such a focus on “adding value,” there is the potential for families to engage in familiar forms of reciprocal exchange with community surveillance structures, making the goal of improving the psychosocial functioning of the mentally ill compatible with broader community goals. Government policy might also encourage and reward private donors for sponsoring community-based health care programs, as is already occurring in some areas, including Shanghai. As mentioned, a centralized, nationwide program of mental health care that relies on hospital-based care is unattainable given fiscal constraints and a shortage of trained mental health professionals. Current research on the Shanghai model suggests that psychoeducation programs, family therapy, skills-building activities, and medication support services reduce the burden of care for both families and society by reducing symptomatology and, therefore, the need for
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costly in-patient services. A bottom-up, or more regionalized approach to mental health care should incorporate systematic research programs that assess local priorities and the effectiveness of local mental health solutions. In addition, the government should encourage the development of professional training programs for mental health professionals, including psychiatrists, psychiatric nurses, clinical psychologists, and social workers. Public education efforts may also help to dispel myths about the mentally ill and reduce the stigma and shame of having mental illness in one’s family. China has a long way to go in this regard, but in cities like Shanghai a systematic effort is underway. The Ministry of Health is already asking psychiatrists for evidence to show that mental health programs are effective and they seem prepared, because of the availability of new funds, to generalize successful demonstration models to larger population groups.
CONCLUSIONS What does it mean in the mental health field in China and in other low- and middle-income societies for a demonstration project to succeed yet be neither sustained nor generalized? The Shanghai model has succeeded locally but it has not been generalized. This model is generalizable for other urban areas, provided the social and economic conditions that constrain the development of communitybased mental health care are accounted for. Other models will be needed for rural areas and disadvantaged urban areas. Specifically, there are important opportunities for social science and clinical researchers to: 1) develop new criteria and definitions of improved psychosocial functioning and modes of social support; 2) research locally salient criteria for successful rehabilitation; and 3) conduct rigorous economic evaluation of cost-effectiveness. The model is a pragmatic bottom-up set of orientations—rather than a top-down/authoritarian one—which accommodates local realities and needs, and therefore appears more meaningful to the very different realities that make up China’s one fifth of humankind.
REFERENCES City of Shanghai (1999). Shanghai annual health report – 1999. Shanghai: Shanghai Scientific & Technological Literature Publishing House. Coordinating Group for the 12-Region Epidemiological Survey of Mental Illnesses (1986). Analysis of survey results of all types of psychiatric illnesses, drug and alcohol dependence, and personality disorders (in Chinese). Chinese Journal of Neurology and Psychiatry, 19, 70–72. Falloon, I. R., Held, T., Roncone, R., Coverdale, J. H., & Laidlaw, T. M. (1998). Optimal treatment strategies to enhance recovery from schizophrenia. Australian & New Zealand Journal of Psychiatry, 32, 43–49. Gu, X. Y., Bloom, G., Tang, S. L., Zhu, Y., Zhou, S., & Chen, X. (1993). Financing health care in rural China: Preliminary report of a nationwide study. Social Science & Medicine, 36, 385–391.
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Heller, P. S. (1973). The strategy of health sector planning. In M. Wegman, T. Lin & E. F. Purcell (Eds.), Public health in People’s Republic of China (pp. 62–63). New York: Josiah Macy Jr Foundation. Ho, D. Y. F. (1974). Prevention and treatment of mental illness in the People’s Republic of China. American Journal of Orthopsychiatry, 44, 620–636. Kao, J. J. (1979). Psychiatry in the People’s Republic of China: A prospectus. American Journal of Chinese Medicine, 2, 441–444. Lee, S. (1999). Diagnosis postponed: Shenjing shuairuo and the transformation of psychiatry in post-Mao China. Culture, Medicine & Psychiatry, 23, 349–380. Lin, T. Y. (1985). The shaping of Chinese psychiatry in the context of politics and public health. In T. Y. Lin & L. Eisenberg (Eds.), Mental health planning for one billion people (pp. 3–37). Vancouver: University of British Colombia Press. Luo, K. & Yu, D. (1994). Enterprise-based sheltered workshops in Nanjing: A new model for the community rehabilitation of mentally ill workers. British Journal of Psychiatry, 165(suppl. 24), 89–95. Pearson, V. (1995). Mental health care in China: State policies, professional services, and family responsibilities. London: Gaskell. Phillips, M. R. (1993). Strategies used by Chinese families coping with schizophrenia. In D. Davis & S. Harrell (Eds.), Chinese families in the post-Mao era (pp. 277–306). Berkeley: University of California Press. Phillips, M. R. (1998). The transformation of China’s mental health services. The China Journal, 39, 1–36. Tian, W., Pearson, V., Wang, R., & Phillips, M. R. (1994). A brief history of the development of rehabilitative services in China. British Journal of Psychiatry, 165(suppl. 24), 19–27. Torrey, E. F. (1988). Surviving schizophrenia: A family manual (3rd ed.). New York: Harper & Row. Wang, X. (1994). An integrated system of community services for the rehabilitation of chronic psychiatric patients in Shenyang, China. British Journal of Psychiatry, 165(suppl. 24), 80–88. Xiong, W., Phillips, M. R., Hu, X., Wang, R., Dai, Q., Kleinman, J., & Kleinman, A. (1994). Familybased intervention for schizophrenic patients in China: A randomised controlled trial. British Journal of Psychiatry, 165, 239–247. Yin, D. K. (2000). The current situation, problem and strategy of Chinese mental health work: Report on China/WHO awareness raising symposium. Chinese Mental Health Journal, 14(1), 4–5. Zhang, M., Yan, H., & Phillips, M. R. (1994). Community-based psychiatric rehabilitation in Shanghai: Facilities, services, outcome, and culture-specific characteristics. British Journal of Psychiatry, 165(suppl. 24), 70–79. Zhu, Z. Q., & Qu, G. Y. (1997). Community-based rehabilitation of psychoses in the city. In S. C. Wang (Ed.), Practical Rehabilitation of Psychiatry (pp. 58–82). Changsha: Hunan Science & Technology Press.
Chapter
2
Enhancing Adherence The Role of Group Psychotherapy in the Treatment of MDR-TB in Urban Peru ANNIKA SWEETLAND, JULIO ACHA ALBÚJAR, AND DALIA GUERRA ECHEVARRIA
BACKGROUND Tuberculosis (TB) is the leading cause of adult death by infectious disease in the world, claiming two million lives each year (Becerra, Farmer & Kim, 1999; Dolin, Raviglione & Kochi, 2000; WHO, 1997). It is transmitted through the air and, while disproportionately concentrated in developing countries, is rapidly spreading across national borders, a symptom of our increasingly global era. As Paul Farmer points out, “there’s no closing the gates on the airborne foe. TB can be spread by one cough. It can be transported from one country to another in a single plane ride” (1999, p. 873). Worldwide figures estimate that approximately two billion individuals are already infected with TB, and the number of new cases each year is estimated at eight million (Dye, Scheele, Dolin, Pathania & Raviglione, 1999). Transmission rates are high; it has been estimated that each individual not receiving effective drug therapy is expected to infect 10–14 other people per year (Styblo, 1984; Sutherland & Fayers, 1975). Even more troubling is the increase in drug resistance within the last few decades; by 1996, an estimated 50 million individuals were already infected with drug resistant strains (WHO, 1996). Multidrug-resistant tuberculosis (MDR-TB), defined as the demonstrated resistance to two or more anti-tuberculosis drugs (among them, by definition, at least isoniazid and rifampin), is becoming a global health disaster. It has been reported in over 104 countries around the world, and has become endemic in certain “hot spots” including Latvia, India, Estonia, China, Dominican Republic, 51
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Argentina, Russia, and the Ivory Coast (Becerra et al., 1999). Drug resistance has developed as a result of inconsistent drug therapy—due to both ineffective treatment programs and patient non-compliance—in which the organism mutates and develops resistance to one or more anti-tuberculosis agents. MDR-TB can be acquired by these means and transmitted to others who have never received treatment for TB (“primary drug resistance”). Treatment does exist for these patients; however, it requires multiple drugs over long periods of time. These drugs are very costly, and because the majority of cases occur in impoverished countries, those who most need these medications are precisely those who lack access to them. When these drugs are made available, treatment adherence is essential for the duration of therapy to avoid the development of increased drug resistance and to prevent further transmission. Peru has one of the most serious TB problems in Latin America and the Caribbean. In 1993, Peru alone accounted for 25% of the reported cases in the region, while effectively representing only 5% of the population (PAHO—Peru, WHO & Ministerio de Salud—Peru, 1994). Northern Lima also carries a disproportionate burden of TB as compared with the national sample. In 1996, while the national incidence was estimated at 161.5 per 100,000, the incidence in Northern Lima was 250.1 per 100,000 (Ministerio de Salud, 1997). Later studies suggest that these figures did not fully represent the extent of TB infection in the area. Through an active case-finding survey conducted from house to house in 1996–1997 by Becerra et al. (1999), the total TB incidence in Carabayllo, one of the northern districts of Lima, was determined to be as high as 525 per 100,000. The alarming rates of MDR-TB in Peru resulted from years of ineffectively managed programs characterized by high rates of treatment abandonment and failure. When Hopewell et al. (1984) evaluated the success rate of treatment among a group of 2,510 patients in Peru diagnosed in 1980, they found that 41% (1,027) abandoned therapy. Of those (1,483) who did not abandon therapy, 21% (312) failed treatment, relapsed, or died. Even among those patients who completed ten or more months of therapy (1,171), only 86% (1007) had bacteriologic proof of cure; the remaining 14% (164) were presumed to be cured on the basis of clinical criteria only. In response to this bleak situation, in 1991, Peru reorganized its program into what has since become one of the most exemplary national TB control programs (NTP) in the world (WHO, 1996; 1999). Operating under the WHO’s recommended Directly Observed Therapy Short-course (DOTS) strategy, the NTP recently surpassed a 90% treatment completion rate for patients (Ministerio de Salud, 1998). Because incomplete drug therapy is the primary cause of the emergence of drug resistance, this high rate of treatment completion is paramount in reversing the devastating trend that developed prior to the program’s initiative. The standard six-month treatment is provided free of charge on a national level to all diagnosed patients as part of an aggressive effort to combat TB in Peru.
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Unfortunately, these efforts are becoming progressively hindered by the rapid spread of drug resistant strains of TB that emerged prior to the initiation of this program. While the WHO strategy is an extremely effective response to drug susceptible TB, there have not been any comparative efforts to taper the spread of the already existing drug resistant strains that predate the strict implementation of the DOTS strategy in 1991. These drug resistant organisms have continued to spread through primary means—that is, drug resistant organisms have infected individuals who have never before received drug therapy for TB. Patients with drug resistant strains of TB who receive the standard DOTS treatment may temporarily respond to the drugs, but due to the ineffectiveness of the regimen, they inevitably relapse and ultimately fail treatment. The broader consequence of administering weak regimens of only one or two effective drugs is that the TB bacillus eventually mutates and develops resistance to more drugs. For patients who fail the initial standard short-course chemotherapy, the DOTS strategy then calls for a re-treatment regimen including the initial four drugs, in addition to a fifth agent. When a patient’s strain already demonstrates resistance to several agents, this re-treatment regimen has been shown not only to be an ineffective intervention, but has been demonstrated to amplify drug resistance, termed “the amplifier effect of short-course chemotherapy” (Farmer et al., 1998; Furin, Becerra, Shin, Kim & Farmer, 2000). In addition, as mentioned earlier, patients receiving ineffective drug therapy are contagious and pose the risk of spreading MDR-TB to others. Tragically, due to the increased risk of exposure, those infected under these circumstances are frequently household and family members. The result is high rates of infection within household units, and when combined with the lack of access to effective treatment for MDR-TB, a great loss of life within families. Many such families in Peru call themselves familias tebecianas, or “TB-families,” a local term used to refer to a family literally plagued by TB. The tremendous emotional toll accompanying this phenomenon deserves significant attention, and will be examined in greater depth in the discussion of the background of the participants of the psychotherapy group. Because of the exorbitant cost of the necessary drugs, the NTP has been unable to respond to the growing epidemic of MDR-TB. However, hope is in sight. Since 1997, Socios En Salud (SES), a non-profit community based health organization in Northern Lima, in collaboration with Partners In Health (PIH) of Harvard Medical School, has been providing treatment free of charge to MDR-TB patients in three districts of Northern Lima—Carabayllo, Comas, and Independencia—with tremendous success. The strategy has been termed “DOTSPlus” as it combines directly observed therapy with individually tailored drug regimens based on demonstrated drug susceptibility. As of 2000, SES-PIH entered into a formal collaboration with the Peruvian Ministry of Health, the World Health Organization, and the Center for Disease Control to expand this community based DOTS-Plus model to the rest of Peru. The project will then be used as a model
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for other countries around the world. In addition, through the combined efforts of PIH, Medicin San Frontieres, the International Dispensary Association and the WHO Working Group on DOTS-Plus for MDR-TB, prices of second line drugs have dropped dramatically and are expected to fall further over the next few years (J.Y. Kim, personal communication). Between August 1996 and February 1999, a total of 75 patients with highly drug resistant strains of TB were enrolled in a community based program through SES-PIH (C. Mitnick, personal communication). As determined by drug susceptibility tests, 84% of these patients were found to be sick with strains of M. tuberculosis resistant to at least four or five first-line anti-tuberculosis drugs. Individually tailored drug regimens were formulated and then administered daily in the patients’ homes by a team of community-health workers who were trained to manage directly observed therapy and to detect and triage adverse effects and other common problems. A small team of nurses, health promoters, and physicians monitored the patients through weekly home visits and monthly office visits. By January 2001, 83.3% of the patients who survived to receive at least four months of therapy had either been cured or were culture negative and still in treatment. Of the 66 patients who received a minimum of four months of therapy, 2% failed, 7% abandoned treatment, and 8% died. Considering the frightening ease with which TB can spread, as well as the cost and difficulty of treating drug resistant strains, promoting treatment adherence was a priority in this project. This meant encouraging patient compliance, and, despite a range of adverse side effects from the medications, a commitment from the health working team to find ways to manage the problems so that patients do not discontinue treatment. Tolerating the symptoms of the disease and the side effects from the medicines, along with the severe emotional burden of enduring this contagious, life-threatening disease is difficult. In addition, those most severely affected by MDR-TB live in areas of socioeconomic deprivation, adding greater stress to those in need of treatment. Given the unique set of problems faced by individuals with MDR-TB and the importance of keeping patients in therapy, SES-PIH felt psychosocial support in the form of group psychotherapy would be one way to help patients cope with treatment and emotional problems, and remain compliant.
GROUP PSYCHOTHERAPY—A HISTORY Interestingly, the first documented use of the methodology now known as group psychotherapy was by Joseph Pratt, a Boston internist, who in 1905 designed a “class method” to supplement the treatment of TB patients in their homes. Although this was not known when the psychotherapy group was organized in Peru, there are some striking similarities between it and Pratt’s original groups. The method was developed in response to the needs of many poor patients who
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were unable to afford the necessary sanatorium treatment. For the majority of patients, it was the last possibility for treatment. As Pratt wrote, “the cases taken into the class were those patients to whom other avenues of escape were closed. Either they were too poor or the disease was too far advanced for them to gain admission to the state sanatorium” (1907, p. 756). The patients were treated in their homes rather than in the expensive clinics, and aid was provided for cases in which the patients’ needs rendered them unable to participate in the program. A nurse, whom Pratt called “friendly visitor,” saw patients in their homes while weekly meetings were conducted at Massachusetts General Hospital in which the patients convened with the physician for lectures, inspiration, and socialization. Although most historians agree that these meetings were the first to use the technique that would later be known as “group psychotherapy” (Ettin, 1992) even Pratt (1922) admitted that the therapeutic effect of these groups was unplanned. He originally intended the meetings to serve the practical purpose of saving time for him and his colleagues by instructing and encouraging the patients in a group rather than individually. However, with time, he discovered other benefits of the groups, e.g., improved morale as a result of social support and witnessing the recovery or improved state of other patients. Pratt observed, “A fine spirit of camaraderie has been developed. [The patients] never discuss their symptoms and are almost invariably in good spirits .... The favorable cases that are making rapid progress toward recovery infuse a spirit of hope in all” (1907, p. 758). In subsequent years, Pratt experimented with the use of psychotherapy groups for other medical patients such as undernourished children, diabetics, cardiac patients, obese patients, and patients with psychosomatic illnesses. In 1945, in regard to the latter group, Pratt later reflected that, “Patients in the class have usually recovered more quickly than have my private patients. This I attribute to hope of recovery awakened by being in the presence of those who were sick and now are well, and secondly to faith in the class and its methods as well as in the directing physician” (1945, p. 329). Many parallels can be drawn between the initial meetings for TB patients that supplemented home-based treatment, and the psychotherapy group for drug resistant TB patients developed in Lima almost 100 years later. Group psychotherapy has a long history of use with TB patients in a variety of settings. As Jack Adler wrote: Even in a relatively “normal” environment where the tuberculosis patient has a family and work to return to after recovery, the very nature of the illness and its treatment, viz., chronicity, communicability, possibility of relapse, restricted activity, etc., gives rise to concerns which manifest themselves in increased anxiety, feelings of insecurity and inadequacy, defensiveness, negativism, dependency, and the like (1953, p. 303).
In the 1960’s group therapy was used for alcoholic TB patients in a sanatorium in Peoria, Illinois (Hunsicker, Hurd & Morse, 1967) and for psychiatric TB
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patients in a Chicago State Hospital (Kienast, Fisher & Rodriguez, 1965), both with reported success. A series of psychotherapy groups were also organized for displaced persons with TB in the Merano Sanatorium in Italy in the early 1950s. These last groups were organized in response to the immediate needs of the TB patients who were displaced persons and survivors of Nazi terror, most of whom no longer had families and relied on the sanatorium for their livelihood. For these special patients, who had suffered unspeakable atrocities, the psychotherapy groups served to help them confront their pasts as much as their disease. Similar to the project in Lima, the group psychotherapy method was used in an effort to maximize the support given to patients, despite very limited resources. The two stated objectives of the psychotherapy groups in Italy were to increase the therapeutic benefit for patients and to educate the staff for a better understanding of the patient group (Adler, 1953). In the literature, group psychotherapy has not been highlighted as a form of psychosocial support for patients with drug resistant TB, primarily because treatment has only recently become available in limited areas. For this reason, we believe that this pilot project in Northern Lima is the first of its kind and can be used as a model for future programs designed to meet the psychosocial needs of patients with MDR-TB. Group psychotherapy works well as a means to provide psychosocial support for medically ill patients for a variety of reasons. In the case of life-threatening and infectious diseases, the diagnosis and prognosis is often difficult to accept. In addition, the diagnosis of an illness such as TB carries with it a social stigma cultivated by a climate of fear surrounding the disease. For patients with illnesses that command limited social support, forging a support system among individuals in similar circumstances can have tremendous benefits for the emotional and, consequently, the physical health of patients. In a group setting, patients with the same disease and treatment can share their experiences, feelings, and coping strategies, and help one another to accept their illness. In light of the origins of group psychotherapy, it seems appropriate that almost a century later this technique has been integrated into the community based care of MDR-TB patients in urban Peru. Like the patients in Pratt’s original TB classes, treatment through SES-PIH was the last chance these patients had after having failed multiple empiric regimens administered by the NTP. Weekly group psychotherapy with a psychiatrist and therapeutic team is one of the many techniques used in this program to provide emotional support for the patients, and promote treatment compliance. Because group psychotherapy is both effective and inexpensive, it has proved valuable in this resource-poor setting. Carabayllo, the site of the SES-PIH program, is an urban slum with a unique history. It is one of the oldest districts of Lima, with archaeological ruins left by the pre-Inca Chavini culture and dating as far back as 3500 B.C. (Municipalidad de Carabayllo, 1990; Patronato de Lima, 1992). While it was once a rural area with a rich history, in recent years Carabayllo has become what is now a sprawling
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shantytown in the northernmost reaches of Lima and housing the poorest of the urban dwellers. The newest inhabitants are largely immigrants escaping rural poverty in the Peruvian interior and tragically finding a different type of urban deprivation characterized by extreme rates of unemployment and poor living conditions. Due to the desert climate, the hills that surround Lima host scarce vegetation and new immigrants are forced to dig plots from higher and higher reaches of the hills. For those with limited resources, basic single-room dwellings are constructed from cardboard, woven branches, and sheets of plastic, and lack access to running water and sanitation. Often, numerous family members are forced to share these shacks, becoming easy targets for parasites and bacteria. It is no wonder that TB has flourished under these conditions. Besides living in one of the poorest areas of Lima, these patients endure unusual hardships due to the resistant nature of their disease. Generally, patients have completed several treatments through the NTP without being cured before beginning the alternative treatment with SES-PIH. The first 75 patients had completed a median of three previous antituberculosis treatments (range 1–8) prior to individualized therapy through SES-PIH (C. Mitnick, personal communication). Due to the unfavorable results in standard treatment programs, the majority have been “written off” in health institutions at least once, or told that no treatment was available to them. After feeling deceived by health professionals in the past, often repeatedly, many patients are reluctant to believe and accept that this treatment will indeed cure them. In addition, the infectious nature of their disease, in combination with the lack of access to adequate treatment, means that whole families often become infected with MDR-TB. Many patients feel hopeless after enduring the loss of many close family members to their disease. As a result of having MDR-TB and undergoing treatment, most patients suffer physical, social, and economic hardships, such as not being able to work or having little energy to take care of their children. These limitations exacerbate their prior financial, physical and social difficulties. While in treatment, patients are dependent on their families financially, which adds stress to already struggling families. Patients become even more dependent when they experience physical limitations as a result of side effects from medications or symptoms of their disease. Patients are often subject to social isolation and discrimination based on the stigma associated with TB. Furthermore, the reduction of intimacy with partners during treatment adds stress to relationships, which compromises the level of social support many patients receive during treatment. These limitations often manifest in frustration and depression, and were discussed in the meetings. These themes are addressed in more detail in the last section. The limited support that many patients receive from family and friends is troublesome, especially considering that the level of social support has been demonstrated to have an impact on treatment outcomes. For example, Barnhoorn and Adriaanse (1992) evaluated a group of 52 compliant and 50 non-compliant
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patients in Wardha District, India to determine factors that contributed to treatment abandonment. Significant differences were discovered between the two groups of patients with regard to social support: 67% of compliant patients, compared to only 32% of non-compliant patients, had the support of one or more relatives. This has significant implications for the way in which the MDR-TB epidemic is addressed, both in terms of preventing treatment abandonment and effectively addressing the needs of patients. A focus group study with TB patients in Sialkot, Pakistan (Liefooghe, Michiels, Habib, Moran & De Muynck, 1995), found that stigmatization led to social isolation for many patients and their families, such that some patients denied the diagnosis and rejected treatment. A diagnosis of TB was considered to impact not only patients, but their families, too. In Pakistan, as in Peru, TB was perceived to be a “family disease” because “once the disease affects one family member, other members are considered to be at high risk of contracting the disease” (p. 1687). For this reason, a TB diagnosis would negatively impact an individual’s marriage prospects, and also that of his or her family members. TB also was reported to lead often to divorce or separation, and the risk was perceived as higher for women than men. The social stigma that emerges from the fear of infection serves to worsen the already difficult circumstances of patients. Because the onset of active TB is associated with bad nutrition and poor general health, society also blames the sick for “not taking better care of themselves.” Instead of learning to accept his or her disease, patients are taught to feel ashamed. Unfortunately, patients’ families, also, are impacted. This most likely contributes to the lack of social support offered to patients in treatment. Given the circumstances of patients’ lives—failure of prior treatments, loss of family members to TB, and simply being ill for an extended period—it is not surprising that depression was the most common comorbid condition identified prior to beginning treatment with PIH-SES (Furin et al., 2001). At the initiation of drug therapy, 38.3% (23) of the first 60 patients who received treatment from SES between September 1996 and October 1998 were diagnosed with depression. Another 18.3% (11) of this cohort were newly diagnosed with depression curing the course of treatment. However, it must be noted that 39% (9) of those patients who had been diagnosed with depression initially were no longer depressed after 6 months of therapy. A patient’s ability to tolerate treatment for MDR-TB is further complicated because the 2-year course of treatment (as opposed to the 6–9 month standard course) involves individually tailored regimens that include second- and third-line drugs, many of which have adverse side effects. Based on the review by Furin et al. (2001) of the initial 60 patients, the side effects most commonly experienced by patients were mild gastritis (100%), dermatological effects (43.3%), peripheral neuropathy (18.3%), depression (18.3%), and anxiety (11.7%). A total of 36.7%
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of patients experienced some form of psychiatric effect during treatment (depression, anxiety, and/or psychosis). The less frequently reported side effects (2–10%) included hypothyroidism, psychotic symptoms, symptoms of central nervous system disorders (seizures or intractable headaches), arthralgias, and hearing loss. The rarest side effects, occurring in only one patient each, were hepatitis and severe gastritis. The treatment program relies on the management of these side effects and symptoms of the disease through secondary medications and other strategies. While the more severe side effects required dramatic interventions, they never resulted in the discontinuation of therapy. Also, serious adverse effects occurred far less commonly in this patient group than reported in prior literature.
THE PSYCHOTHERAPY GROUP Over the course of six months (beginning March 1999), the team of doctors and nurses from SES-PIH integrated 22 patients into a pilot psychotherapy group. The patients were considered on the basis of four criteria: (1) is undergoing MDR-TB individualized therapy with SES-PIH, (2) is currently smear and culture negative, (3) is not displaying symptoms of acute psychosis, and (4) has expressed interest in participating in the group. Patients who were still smear or culture positive were not integrated into the therapy group for several important reasons. First, while smear and culture positive, the patients were contagious with highly drug resistant strains of TB. Exposure to patients currently in treatment would pose the threat of further transmission of drug resistant strains, as re-infection has been reported in the literature (Nardell, McInnis, Thomas & Weidhaas, 1986). Second, because patients are expected to smear and culture convert within two to three months of effective therapy, and the group was not time-limited, it was thought more prudent to wait before integrating the new patients. During the interim, patients were provided emotional support through daily home visits by nurses and health promoters, and referred to individual psychotherapy when needed. Patients displaying symptoms of acute psychosis were not involved in the therapy, either, to prevent the possible disruption of group dynamics. However, when a patient’s psychotic symptoms subsided or could be managed more effectively, the patient would be eligible to reintegrate into the group. Only 10% of the initial 60 patients treated by SES-PIH experienced psychotic symptoms during treatment (Furin et al., 2001). One of the original patients, despite mild psychotic symptoms, was invited to the therapy group. Her attendence, however, was not regular. Within the first six months of therapy group (24 sessions) she participated four times. To date, more than two years after the group’s inception, she has been the only patient to abandon treatment despite attending the therapy
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group. Only one regular member of the therapy group developed acute psychotic symptoms during treatment that were severe enough to preclude her participation in the group temporarily (see below). The patients formed a heterogeneous group, composed of individuals with different genders, ages, and backgrounds. Their mean age was 25 years, with a range of 17 to 66 years. Of the 22 patients, half were female and half were male. The patients had completed an average of between two and three previous treatments without being cured, and 15 of 22 had been “written off” in health institutions at least once. The amount of time the patients had suffered with TB upon joining the psychotherapy group (including past failed treatments) ranged from approximately 15 months to 10 years, with a mean of 2.8 years. Patients were in different stages of treatment in the early psychotherapy group sessions; while several patients joined the therapy group in their fourth month of treatment, one patient joined after having recently finished treatment cured of MDR-TB. As a group, the patients had completed a mean of 8.5 months of treatment. Ten of the 22 patients had lost an average of two close family members to MDR-TB. In one tragic case, a 20 year-old patient had lost three of his siblings to MDR-TB in the three consecutive years leading up to his diagnosis and treatment. A total of eight of the 22 patients had lost siblings to TB and four patients had lost their mothers. Also noteworthy, three of the patients in the group were siblings, aged 17, 22, and 24 years old. The extraordinary loss experienced by these patients and their families had many significant emotional consequences, which are discussed in detail below. Whether due to the social stigma, the fear of infection, or general family conflict, only about two-thirds of the patients in the therapy group was perceived to have family support in treatment as evaluated by the nurses and health promoters. The psychotherapy group convened weekly in the SES office for an average of two hours. The sessions were moderately structured, and facilitated by a psychiatrist. The patients, along with the SES nurses and health promoters, participated in the group. At least two cured patients were invited to each meeting to offer their testimonies and support. It was deemed crucial that a professional skilled in group-management, in this case a psychiatrist, be present in each meeting to mediate discussions of difficult issues. All participants sat in a circle. The psychiatrist began each session by asking members about their experiences over the past week, their feelings, their families, or their disease. Discussions developed in a spontaneous manner; the leader mediated and sought the opinion of all members of the group. At the end of each session, snacks and refreshments were served and the patients were encouraged to socialize. Surveys were distributed to each patient at the close of each meeting to collect personal reactions, comments, and suggestions. The majority of meetings were geared towards patients, but on occasion, family members were invited to participate. During these meetings, the family members
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heard about other patients’ side effects and psychological reactions to the disease and, thus, were better able to understand the experiences of those close to them. In addition, once every two months, the group would go on an excursion to the countryside to relax and enjoy one another socially in an informal environment. The health promoters distributed weekly invitations to remind the patients of the meetings, and encourage participation. If a patient was unable to attend for financial reasons, bus fare was provided. For those patients whose physical limitations made it difficult for them to attend the meetings, transportation was arranged. Although participation was by invitation only, the group was open in that it evolved gradually as new members were integrated and other patients withdrew voluntarily. After each group therapy session, the health worker team—the therapist, nurses, and health promoters—convened to reflect on the session, specific cases, psychological issues, and strategies, a technique generally known as “psychiatric liaison.” The objective was to integrate the health working team into the therapeutic process and to strengthen the team as a whole. In these meetings, team members expressed personal and patient-related concerns and devised follow-up strategies for the patients. The meetings served to increase communication and create more cohesion within the team, while educating members on psychosocial support strategies. They also created a forum in which to discuss and share work related stress and concerns, as well as to collectively evaluate patients. Questions and concerns were fielded by the psychiatrist and by the team as a whole. General strategies in dealing with psychological issues were considered and implemented in patient care. The meetings served to strengthen the network of support among health workers and to enable the team to better assist patients with psychological difficulties. The nurses and health promoters also conducted individual follow-up with patients in their homes during the week and provided emotional support. Through this close and ongoing interaction, the team was able to detect the onset of psychological crises and facilitate prompt interventions. Difficult cases were presented in the psychiatric liaison meetings and the team would discuss strategies and propose specific follow-up action. Written summaries of both meetings, containing detailed case updates and progress reports, were distributed to those team members not present.
Results The evaluation of the effect of the therapy group on the overall emotional health of the patients is based on extensive documentation including transcripts of each psychotherapy meeting, written surveys completed by patients following each session, and detailed notes from each psychiatric liaison meeting. Using these tools, examples will be used to illustrate the invaluable positive effects the
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therapy group had on the lives of the patients involved. Although the analysis will only cover the first 24 meetings, or the first six months, it should be noted that at the time of this writing, the therapy has continued to thrive for over two years with stronger results than ever.
Themes Addressed in Therapy Three classes of themes surfaced in the therapy sessions. The first related to MDR-TB itself, and included patients’ reactions to the diagnosis and the evolution of their perceptions about the disease. For most patients in Peru, as in many other poor countries, the lack of access to the necessary medicines means that a diagnosis of drug-resistant TB is a virtual death sentence. Often, health professionals did not offer any hope and, in many cases, were quite harsh with patients and families. Patients spoke of the difficulty of maintaining hope when told repeatedly that no treatment existed for them. One patient, Margarita,1 recollected, “They told me, ‘Nothing can be done. The medicines you need are very expensive. Don’t waste your family’s money. It would be better for you to buy yourself a coffin.’ ” Her six year-old daughter, who was with her at the time, later asked, “Mommy, are you going to die” Margarita told her no, because she explained, “I had to find strength for her.” When Domínico, a 67 year-old patient, was told several times that he could not be cured, he recalled, “Every day I thought about death and I had faith in God.... My family had already bought my coffin. Everything was ready. But I am still alive.” Some patients voiced a feeling of rejection from friends and family, which they attributed to the stigma and fear of infection that are associated with TB. For patients who had previous family problems, the onset of disease and the stresses caused by treatment served to amplify prior difficulties. In the case of Alejandra, one of the first patients treated through SES-PIH, the abusive tendencies of her father resulted in a lack of support when she became ill. Alejandra explained to the group that her father had been seeing another woman, though he still lived at home. Her parents had many arguments, and he verbally abused Alejandra’s mother a great deal. When Alejandra told her father that she wanted to go back to school, he told her, “There is no money.” Then, to make it worse, he would say, “You’re not going to study. You’re going to die from this disease.” She said that it was as a result of the support of the SES team and her faith in God that she was able to finish treatment. Many patients expressed how their ideas about their illness had evolved. Carmen, at the initiation of the therapy group, was approaching her twenty-second month of treatment. The side effects of her medication regimen were among the most severe experienced by any of the patients in the program. Due to the limited 1
Pseudonyms are used for all patients to protect their anonymity.
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drug susceptibility of her TB infection, there was little flexibility in adjusting her treatment. As a result of her difficultly in tolerating the side effects from the medicines (and which were exacerbated by severe depression), Carmen was very close to abandoning treatment. However, as she neared the end of treatment, she displayed strength in her testimonies and great determination to overcome her disease: I am finally in the stage of acceptance. At the beginning it was traumatic. I thought, “Why me” I had to give up my studies, my friends, everything I enjoyed. And then the problems started with the medications.... My goal is to study. I want to work, but at the same time take care of myself and to value everything I have: my friends, my family.... At 18 to 20 months it gets better. Now I hardly have any of the problems of before.
After completing treatment, Carmen continued to participate in the group therapy sessions and offered support to patients who were still in treatment. By recalling her experiences, Carmen set a positive model and offered moral support to others. This became a notable, and unexpected, pattern among cured patients. Many continued participating in the group and gave support to those still struggling with treatment. A second set of themes specifically concerned the treatment of MDR-TB. Side effects from medications are often severe in regimens tailored to resistant strains of TB, and the patients often commiserated with each other about symptoms and shared coping strategies. In one meeting, two cured patients spoke about the strategies they had used to tolerate treatment. For example, they suggested that one method to lessen nausea was to eat enough fruit to get the taste of the medicines out of their mouths. When one of the patients still in therapy asked if they ever got depressed, they responded, “Yes, of course.” They recommended that patients get together and go for walks to distract one another from the side effects of the medicines. Furthermore, one of the cured patients reminded the patients in treatment: Our treatment was uncertain. We didn’t know if we were going to be cured or not. We were the first patients (of SES-PIH). Now you guys know that there is a cure. Everything has an end. It is worth it to continue. You have to keep going.
All those undergoing treatment for MDR-TB receive one intravenous medicine for a minimum of six months, and, sometimes, for as long as 24 months. When Julia, a 19 year-old patient, complained about the pain of the daily injections, a health promoter and several patients offered their support. The promoter reminded her that all patients need to receive injections, and that each patient has to receive them for a different amount of time. Mariela, a cured patient who received injections for the duration of her two years of treatment, suggested applying
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something cold to the injection site. She encouraged Julia and the others, “You have to take into consideration that these injections are going to save your life.” Many patients spoke of the frustrations associated with physical limitations due to the disease and its treatment while encouraging each other to accept those limitations as temporary. For example, there was Mariana, a 29 year-old patient, who joined the therapy group several weeks after the group’s initiation, when she began responding positively to treatment (culture conversion) after four months of drug therapy. Her most significant complaint was the nausea caused by gastritis. She would spend all day in bed, and became depressed when she was unable to care for and give attention to her nine year-old daughter, e.g., washing her clothing and helping her with her homework. In the therapy group, an emphasis was always placed on accepting temporary limitations, setting future goals, and focusing on life after treatment. When one patient was called upon to offer advice to Mariana, he said, “She should get healthy first .... If she wants to do too much, she can relapse. Little by little she needs to get healthy and then later [she can try to do things].” In another session, patients spoke of their difficulties in maintaining sexual intimacy with their partners, and how that affected both their relationships and the amount of support they received. Several patients stated that fear of transmission was not the only problem. Many felt a total lack of sexual desire and attributed it to the medications and treatment. Mercedes, who introduced the topic when she joined the group in its twenty-third session, was frustrated because her husband could not understand that she lacked sexual desire because of her illness and its treatment. During the first months he was supportive, but this did not last. When he attempted to be affectionate, Mercedes would reject him and warn, “You need to take care of yourself. I could infect you.” This was partly the reason for her distance, but, she admitted, it was more of an excuse. She felt unable to reciprocate or respond to his advances. “He [said] that he is not afraid,” she explained. She felt trapped: “He thinks that I don’t love him.” Eventually, he began to accuse her of infidelity. He followed her to the health center each day as a means to check on her. “He is jealous,” she explained. When she found that he was seeing another woman, Mercedes attributed his infidelity to her refusal to be intimate and forgave him. On the outside, she feigned acceptance, but admitted, “I am afraid that he will come home with another disease while I am home sleeping.” She was afraid to confront him on this issue because of his threats to leave her and to take their daughter with him. Fernando also thought that the lack of intimacy was due to the treatment. Fernando was a 29 year-old patient who had been in and out of five treatment programs before beginning the alternative program through SES-PIH. He had been diagnosed with TB in 1989, and had been battling the disease ever since. His mother died of TB when he was young, and while he was in treatment through
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SES-PIH, his younger sister was diagnosed with MDR-TB and entered treatment as well. His girlfriend of several years began to complain to him, saying that their intimacy “wasn’t what it used to be.” He said that he wanted to be intimate, but just couldn’t. “One just can’t,” he insisted. His girlfriend suspected that he was with another woman. She was jealous of the nurses and promoters, and suspicious of the therapy group on Saturdays. Although he tried to explain to her how he felt, she complained. She would ask him if he remained in their relationship out of a sense of obligation or because he loved her. He assured the group, “It’s because I love her.” He felt frustrated that she could not understand him. Three other patients reported similar difficulties in their relationships during that meeting and attributed them to treatment. Maribel, who was just completing one year of treatment, encouraged the other patients, “After a year, you feel normal. That’s what it’s like in the beginning.” Carmen, who had completed treatment, speculated, “I think it is due to depression, too. Everyone takes care of you, and a time comes when you just want to be by yourself.” By sharing similar concerns with regard to sexual intimacy, the patients were able to feel validated with regard to some of their difficulties and frustrations, attributing them to their disease and treatment. The final and broadest set of themes was associated with emotional problems, both pertaining to and independent of the disease and treatment. Prior to their illness, patients’ lives were difficult, at best: violence, sickness, and death were an integral part of life. The majority had grown up in poor families and endured the consequences of social, economic, and political forces working against them. Previous social and financial problems were exacerbated by their sickness, resulting dependence, and inability to fulfill expected roles. The psychotherapy group gave patients a forum in which to discuss and share their problems, offer support, and work together to create solutions. An emphasis was placed on recognizing the extreme difficulty of struggling not only with MDR-TB and its treatment, but also with problems in their personal lives. For Julia, a 19 year-old patient, the emotional results of extraordinary hardship in her early life came to light in group therapy. Her father was an alcoholic drug user who appeared and disappeared from her life repeatedly. When Julia was ten, her mother—who was undergoing treatment for TB at the time—discovered Julia’s father with another woman. In despair, she abandoned treatment and ultimately died of TB. Before she died, she cursed Julia by telling her, “When I die, you are going to suffer with your stepmother.” Julia never learned to forgive the other woman, nor her father for causing her mother to suffer. After her mother died, Julia and her two sisters went to live with their aunt and uncle. When Julia’s uncle came to participate in the therapy one meeting, he shared more of her background. Julia’s father was, as her uncle explained, a “delinquent” who “smoked [crack] and slept in the streets.” Periodically, when he would get a job and enter a stable relationship, he would return to demand his children. It was
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during one of these episodes, living with her irresponsible father, that Julia fell sick with TB. According to Julia’s uncle, “The children had a lot of freedom; they had fun. She didn’t take care of herself and she got sick.” Julia’s uncle was particularly sensitive to these issues because, he said, “We come from una familia tebeciana; we need to take care of ourselves .” Later he elaborated, “I have lost two of my siblings and my father (to TB), and my cousins are also dying.” He had observed the lack of supervision provided by Julia’s father, and predicted the outcome. When he saw Julia was sick, he offered to take her in and help her get treatment. She refused. After failing three consecutive treatments through the NTP, however, she returned to her uncle. “You were right,” she conceded. Together they went to the health center, where she was officially diagnosed with MDR-TB. Having exhausted the resources available to them at the public health center, Julia and her uncle went to a private clinic, which offered to supply a different drug regimen for seven months. When she completed the regimen, still not cured, they went back to the clinic and were told that no treatment was left for her. As a last resort, surgery was recommended. Julia’s uncle sold his vehicle to finance it, but even so, little hope was promised. “We left crying, that not even selling five vehicles would she be cured!” It was at yet another doctor’s office that they found out about SES-PIH. In July 1998, Julia initiated treatment. After beginning to receive individualized drug therapy, the surgery was no longer deemed necessary. Unfortunately, Julia’s troubles were not over. Through the series of ineffective treatments she had received, she had acquired resistance to nine anti-tuberculosis medications. The remaining drugs offered limited flexibility, and although she had significant difficulty tolerating several of the medications, she had no other option. She was the one patient of the group whose participation in the therapy was suspended temporarily when she developed acute psychotic symptoms, undoubtedly due to the combination of the side effects of the medicines and her prior emotional instability. (See below, section entitled “Acute Psychosis.”) When Julia shared with the group that her mother had died of TB, three other patients shared stories about losing a parent, two from TB and one from a heart attack. Pablo, a 21 year-old patient, was the first to respond. He told the group how his mother had suffered at the hands of his abusive father. When she died of TB, Pablo, at the time only one year old, was taken away from his father by his siblings. “My siblings raised me,” he explained. Later he revealed that one of his sisters had also died of TB. “She suffered so much for so long.” Fernando was moved by Pablo’s testimony and shared the circumstances surrounding his own mother’s death, also from TB. He said that he couldn’t stand to see her suffering, and when she died he felt relief that her suffering would end. He elaborated, During the funeral I felt badly because I couldn’t cry. I missed her. I built a wall around me. Three months later, I woke up crying. I had dreamt about her
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and I felt guilty. One feels impotent. What hurt me most was to see my mother’s suffering.
All of these testimonies reminded Mariana of the death of her father from a heart attack, and she shared her thoughts with the group. She said that she still had mixed feelings about her father’s death. One year before he died, he “abandoned” Mariana’s mother. Mariana recalled that he drank a lot and physically abused her mother, and they fought often. When asked if her father was affectionate with her and her mother, she said “No. He was strong. He would say that he didn’t need us.” She regretted that her only memories of him were these negative ones and not of happier moments. Often, prior domestic problems and/or depression were amplified by the stresses of the disease and treatment. In one sad case, Adriana, a 21 year-old patient, felt even more powerless in a situation of domestic violence than she would have if she were healthy. Her husband was controlling, abusive, and would not let her participate in the therapy meetings because he did not want her talking about “their personal problems” to others. He insisted that Adriana take care of their young baby, and would use that as an excuse to keep her from leaving the house. On several occasions, he took the busfare that SES had supplied so that Adriana could attend meetings. In an effort to convince the husband to let her participate in the therapy, he and Adriana were invited to meet privately with the therapist. At this meeting, he agreed to permit Adriana to attend the group sessions, but once at home he prevented her, again, from going. On the limited occasions when Adriana was able to attend, she was visibly anxious and upset. She told the group that when other patients invited her to go out for walks to take her mind off treatment, her husband would forbid her to go. “He doesn’t let me. And anyway, I have my baby [to look after].” The other patients encouraged her to leave the baby with her husband. “Sometimes I cry, I think, why can’t my husband take care of the baby? I take care of him all day.” She said that whenever she left the house, she never wanted to return. She would find things to do that kept her away for a little longer. “I wish I could run away, but I don’t want to abandon treatment.” When asked how she felt about the emotional support offered by the SES team, she responded, “I miss [my nurse]. I talk to her. I tell her my problems. She gives me advice. She tells me that it’s not my fault. I trust her more than I trust my mother.” Maribel, a 28 year-old mother of six, also showed strength in her determination to overcome her disease despite adversity. She grew up in an abusive household in which her alcoholic mother was always drunk and abused the children, both physically and verbally. During one meeting of the psychotherapy group, she also alluded to a traumatic experience when, at the age of fourteen, she was sexually assaulted. Maribel’s first husband was physically and emotionally abusive. “I used to cry. He would ask my forgiveness; he would say that everything
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was going to change. But it never did.” She had two children in this marriage, which ended in divorce. After the divorce, the children lived with the father and were taught to hate Maribal. When she became sick with MDR-TB, Maribel’s ex-husband told the children that she was dead. It was only through concerted efforts by Maribel to see the children that they found out that she was in treatment, and, indeed, still alive. Maribel remarried and had four more children. Although her second husband was less physically abusive, he was also controlling and they had many financial and marital difficulties. She said that even when he would sell her belongings for money, he complained when she asked him for some. As a result of the side effects from treatment and her illness, Maribel and her husband ceased to be intimate during the first few months of treatment. The lack of intimacy added stress to their already tenuous relationship and Maribel suspected that he was seeing another woman. On one occasion when he seemed particularly unhappy with their marriage, she told him to find someone else who would make him happy. She admitted that at that point they lived more as partners than as husband and wife. Even after this, however, she revealed that he would force her to have sexual relations with him: “He grabbed me against my will. I didn’t want to.” In the therapy meetings, the group marveled that it was as though Maribel were taking care of six children—four of her youngest children and her two elderly parents—in addition to trying to get healthy in treatment. Her mother’s alcoholism caused Maribel significant distress and was an ongoing theme in the meetings. On several occasions, the SES team offered assistance in having her mother hospitalized and in treatment, but Maribel always changed her mind at the last minute out of fear of hurting her mother and maintaining hope that her mother would “change” on her own. However, despite many difficulties during treatment, Maribel showed strength and maintained, “My family doesn’t support me much with my disease, but I want to overcome it. I have never thought about abandoning treatment. I am going to finish and move on with my life.” Indeed, at the time of this writing, Maribel was cured of MDR-TB and was rebuilding her life. It was clear from the testimonies that violence and abuse were not uncommon within households. Many patients referred to violence in their homes, either in physical punishments or between their parents. Efforts were made to taper the cycle of violence in these patients’ lives. For example, when the topic of disciplining children was raised in one meeting, several patients offered sobering testimonies. When José, a 31 year-old patient, was asked how he was punished as a child, he responded, “With every object that exists in the world: sticks, iron, electric cords, whatever they could find.” When asked if he had ever hit his daughter, he admitted that he had once. He realized that he had recently taken out the anger from a fight with his wife on his daughter by hitting her twice. He felt a great deal of remorse. The therapist encouraged him to reflect on his own upbringing in the
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context of the way in which he raised his daughter, in an effort to break the cycle of violence in his life. The therapist stressed the importance of raising his daughter in a loving, supportive way. Julia revealed a frightening truth about how she had been punished as a child. She recounted how she had been obstinate and frequently acted out by skipping school and acting rebellious with her aunt and uncle, her caregivers. Because of this behavior, they punished her by putting rocoto (a type of chili pepper) in her eyes and applying it to her genitals. “I used to run away.” When the therapist asked her, as he had challenged José, if she would raise her children in the same manner, she said no. “It is because of that [punishment] that I am a fearful person, because of the physical punishment, the beatings.” She vowed that she would raise her children differently.
Familia Tebeciana As mentioned above, due to the contagious nature of MDR-TB, combined with the relative lack of access to appropriate treatment, MDR-TB often infects whole families. To illustrate this point, preliminary data on the initial 45 patients who entered treatment through PIH-SES in 1997 indicated that at least 20 of those patients belonged to 12 household clusters of TB and/or MDR-TB (Farmer et al., 1997). Unfortunately, the families of the members of the therapy group followed the same devastating trend. Among members of the group, ten of the patients had lost an average of two family members to TB or MDR-TB. The theme of loss and grief over lost family members surfaced many times in the therapy, and those with similar experiences counseled one another. One of the most tragic cases was the family of Miguel, a 20 year-old patient who began treatment August 1998. During the previous three years, his family had been devastated by the loss of three young members to MDR-TB. The first, Miguel’s older brother, died in 1996. Shortly thereafter, two of his sisters entered treatment with PIH-SES for MDR-TB. The first to enter treatment was very ill and had already suffered significant lung damage. She died five months later, in May 1997. Miguel’s other sister also had significant lung damage by the time she entered treatment, and was extremely depressed as a result of the devastating loss of her two siblings. Unfortunately, she, too, passed away in April 1998. Several months later, after having failed two treatment regimens through the Peruvian NTP, Miguel was officially diagnosed with MDR-TB and entered treatment with PIH-SES. Initially, treatment for Miguel was extremely difficult. Although the PIHSES team felt confident that they had caught Miguel early enough that he would respond positively to drug therapy, his family protested his participation in the program. The family blamed PIH-SES for “killing [their] children,” and understandably did not want Miguel to suffer the same fate. During the first few months
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of treatment, each time the nurse would administer Miguel’s daily injections in his home, the family would crowd around and cry hysterically, as though the nurse were injecting a form of poison rather than the medicines that would ultimately save Miguel’s life. Furthermore, Miguel fed off the attention he was given and began to feign symptoms, like seizures, to receive more. In addition to individual psychotherapy for Miguel, it was clear that he and his family were going to need a great deal of support. When the psychotherapy group was organized seven months later, the nurses immediately considered Miguel for the group. Although initially he was shy and didn’t like to talk in the group, Miguel attended every meeting, and insisted that he preferred to listen to the other patients. However, in the therapy group’s eighteenth session, Miguel had a breakthrough. Unfortunately, one of the other younger patients in the group was not feeling well. Miguel crossed the room to sit next to her, put his arm around her, and spoke for one of the first times. He admitted to the group that the young patient reminded him of one of his late sisters. He told the group that two of the other members of the group reminded him of his other deceased siblings. Miguel had never openly mourned the loss of his siblings, and he felt their company within the group. He explained how the three of them had died in consecutive years, and for that reason he did not feel hopeful about his own recovery; he did not expect to live more than a few years. Another patient shared with Miguel that he, too, had lost two of his siblings to TB. He told Miguel that he had also felt hopeless several times during treatment, but that they needed to continue fighting together. When asked what he was thinking, Miguel broke into tears and exclaimed, “I wish they were here with me!” This acknowledgment was a significant step for Miguel. Over the course of the therapy, despite his reluctance to participate, Miguel demonstrated significant improvement as a direct result of the meetings. He showed signs of becoming more independent, enjoyed the support he received from his peers in the group, and ceased to feign symptoms. He began to look towards the future and life after treatment. He enrolled in some computation classes, while continuing with treatment and weekly participation in the therapy group. Miguel’s problems were far from over, but he was on the path toward both emotional and physical healing. Miguel finished treatment in September 2000, cured of MDR-TB. He continues to participate in the therapy groups to offer support to patients still in treatment.
ENHANCING ADHERENCE: A CASE EXAMPLE José was a 31 year-old man who, at the initiation of the therapy group in February 1999, was entering his seventh month of treatment for MDR-TB. He was initially diagnosed with TB in January, 1998 and had failed one empiric regimen
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administered by the national TB program before beginning treatment with SES-PIH. His most common physical ailments during treatment were chronic headaches, mild gastritis, insomnia, and dizziness. He also suffered with peripheral neuropathy for a period during treatment, and developed Hepatitis Medicamentosa secondary to Pyrazinamide, a rare side effect caused by this medication (occurring in only one of initial 60 patients) (Furin et al., 2001). In general, José lacked family support; they blamed him for his illness and his consequent inability to provide financially for his wife and child. On the first day of therapy, José seemed agitated and distressed. When he was invited to speak towards the end of the meeting, his testimony was mixed with yelling and tears as he expressed his desire to abandon treatment: I have been married for ten years. I am the head of my household. I need to provide for my daughter as much as I can. I have been working despite my treatment, but I can’t any longer.... I am going to quit treatment, I am going to quit everything.... If I quit treatment I will no longer have all of the physical ailments. I could work and save up money. I think that I have already done everything I can to help myself. I am going to abandon treatment. I feel useless. If I abandon treatment, I could be useful. In the ninth meeting, José began to value the social support provided by the group and the health working team: I don’t know how I got sick [with TB]. I have wanted to abandon treatment many times. The promoters and nurses resisted a lot. I am very grateful to them. They told me that I was a coward, that I could give my daughter much more in the future if I get healthy.
By the eleventh meeting, there was a glimmer of hope in José’s voice as he began looking towards the future and life after treatment: I am happy. I had a [medical] consult yesterday and they told me that I might finish treatment soon .... I no longer have physical ailments. I have three goals: first, I want to find a stable place to live; second, I want to return to work; and third, I want to provide for my daughter.
In the eighteenth meeting, José began to relate to other members of the group and use his experience to offer support. When Miguel mourned the loss of his three siblings to MDR-TB, José offered, I also have lost two siblings to TB. My sister was 18 and she has now been dead for two years.... [Her death] affected me a lot. She was like a daughter to me.... I understand what it’s like to lose family members. It isn’t easy. He encouraged another young patient by saying, “Here we have a family. We love you.”
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In the twenty-fourth meeting, when Miguel alluded to the consideration of abandoning treatment, José offered some of his experience to help him: When I was told I was going to die by doctors, I wanted to kill myself. Some four to five times I have wanted to quit all of this. Thanks to the promoters I have continued. I have to finish. I understand what it is like to go through difficult times. We are at the same point [in treatment] and there is little time left. You need to keep fighting.
As these excerpts demonstrate, José evolved from an angry, frustrated, and chronically suicidal patient to a valuable member of a social support network. During the course of group therapy, he learned both to draw from the support offered, and to contribute to the rehabilitation of others. He came to reflect upon his own suffering and use this perspective to help others endure similar emotional stresses. He went from feeling “useless” on the first day of the therapy group, to learning a very important skill and social role, that of taking part in the support of others. Also noteworthy is that despite strong inclinations, Jose did not abandon treatment. Because of the extreme significance of treatment completion, it is remarkable that, to date, no regular member of the therapy group has abandoned treatment.
Group Dynamics The rich diversity of the group made for many dynamics that proved valuable in the therapeutic work. As mentioned above, patients varied not only in age and gender but also stage of treatment. Initially, the most powerful therapeutic dynamic was evident between patients who had finished treatment successfully and patients in early stages of treatment. The cured patients were models of strength; their testimonies gave patients still in treatment a sense of hope that one day they, too, would be cured, and would be able to reclaim their lives. Carmen was a key player in offering support to patients in treatment. This excerpt demonstrates the strength of her testimonies and the way in which the therapist was able to draw upon her words and find a positive side of treatment: No one knows what it is like but us. For me it was also very difficult. But this all passes. I used to get desperate. The [promoters] pressured me. “How are you going to come this far only to give up” they asked me. Now I have friends, my studies, my family; I go out when I want. I am more autonomous ... I take care of myself. I value myself. I am stronger, more secure. [Therapist: So there’s a positive side to treatment too?] Yes. I value myself more now. Even with food: I eat well. I take care of myself. I push myself more. I want to do more things. [Do you value your family more?] Yes. I never liked the dependence [during treatment].... There was a time when I could not walk; they had to help me. I lost my equilibrium. In
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completing treatment, I feel liberated. Now I am studying computation and English.
Initially, a deliberate effort was made to invite at least two cured patients to every therapy group to offer their perspective and bring hope to patients in treatment. However, as time progressed, it no longer became necessary to recruit cured patients from outside the group. As more patients finished treatment, many continued to participate in the group. These individuals, like Carmen, provided support to patients still undergoing treatment; their perspectives, not only as cured patients, but also as veteran members of the therapy group, strengthened the effect of their testimonies. As new patients were integrated into the group, dynamics emerged between the newer patients and the ones who had been in the group for some time. The rich dynamic that developed resulted in a shortening of the time necessary to gain the trust of individuals; members of long-standing quickly initiated new members. For example, Juan, a new patient in his seventh month of treatment, was invited to participate in the fifteenth group session. The group had already been meeting for four months, and had evolved into a strong system of support. While in earlier meetings patients were more inclined to discuss side effects and physical ailments, as trust was established within the group, patients began to share more intimate themes. Juan, by nature of these dynamics, was able to express his fears on his first day and discovered that he was not alone. It became evident that membership in the group helped patients to feel less isolated and alone in their treatment, while, at the same time, forced them to reflect on their own suffering and to use it as a means to comfort one another: “I don’t know what it is like for all of you,” Juan addressed the group, “but I have to take medicine three times a day.” “Yeah, we all do,” replied a chorus of patients. “I take pills, and I also receive injections.” “Yeah, so do we,” replied the same unison chorus. “[When I found out I was sick] I wanted to run out. My family feels rejected. I felt ashamed. At three months [of therapy] I practically wanted to end my life.” “You thought about killing yourself?” asked the therapist. “Yes.” “Almost all of us have felt that way,” remarked a few patients.... “Do your wife and children support you in your treatment” asked the therapist. “Sometimes. They also reject me. There are reproaches. [My wife will] think I look fine and she’ll demand that I work. She criticizes me when I don’t work.” “I have been through worse than you,” offered José. “Everyone needs someone to support them. Everyone needs someone to support them and to orient them,” said Juan.
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“That’s the idea behind this group. We are a group and we support one another,” offered the therapist. José encouraged Juan, “That’s what I do and it makes me feel better. I have been through what you are talking about. This group of friends I have here helps me. I don’t live very well, but I know that I have life. Even though I’ve been through a lot, I finish treatment in December.” “Did you also think about killing yourself” Juan asked José. “Many people think about that. I understand you a lot.” “I thought that I was the only one,” admitted Juan. “We are all going through the same thing,” said the therapist. “Yes, I am starting to realize that,” concluded Juan.
The patients formed a group composed of individuals of different genders, ages, and life experiences. As a result, patients from different life stages were able to reflect on one another’s experience and give advice. For example, the oldest member of the group (66 years old), Domínico, played the “father” of the group. Every time a difficult ethical issue or testimony would arise, the group would appeal to Domínico’s wisdom cultivated by years of experience. For example, one day, Jose shared the events that led up to his sister’s death. She had four children and a husband who abused her physically. When she discovered the infidelity of her husband, she had ceased to eat, became very depressed, and later was diagnosed with TB. When she died, José felt impotence and rage, and was unable to forgive the husband. When asked to comment on José’s testimony, Domínico reflected, “Life has thorns. One needs to tolerate them and overcome difficulties, not harbor resentment. You can’t keep resenting others because they will generate more resentment and spread it.” There was a two-fold benefit to Domínico’s commentary; on the one hand, Domínico was able to offer advice to some of the younger patients based on his experience. Secondly, through the attention he received in the group he was able to feel like a valuable member of the social network. Domínico lived alone, having been abandoned by his son shortly after coming to Lima from a Southern province of Peru to receive treatment. His only daily visitors were the nurses and health promoters who came to his home to administer the medications, monitor his treatment, and provide emotional support. Domínico never missed a single meeting, and always had something valuable to offer to the group.
Acute Psychosis Julia was a 19 year-old patient who was infected with a strain of TB that was resistant to nine of the 20 anti-tuberculosis drugs. This resistance pattern meant she was required to follow a regimen that included high doses of two drugs that can have significant side effects. Initially, Julia experienced gastrointestinal problems, insomnia, headaches, depression, and a darkening of the pigmentation of
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her skin. Her reactions to the medications intensified with time. She developed peripheral neuropathy and experienced a burning sensation in the nerve endings of her feet. Eventually, the resulting nerve damage and loss of sensation in her legs made it virtually impossible for her to walk. With most patients, when side effects become intolerable, drug combinations can be altered, but this was not possible in Julia’s case. Although it was unknown whether or not the damage to her nerves would be permanent, due to the extreme drug resistance of the TB bacillus that infected her, no other drug combination would be effective enough to cure her. She had only two options: continue with the effective medication regimen and risk permanent nerve damage or discontinue treatment and die. When, in her eleventh month of treatment, Julia began to exhibit symptoms of severe depression and mild psychosis, the whole group was deeply affected. During the session before her temporary removal from the group, she had a distant look in her eyes. She sat perched on the side of her seat, leaning as if she were going to fall. Her face was quivering, and she did not respond to inquiries, nor to the efforts of other patients to offer her support. Her depression spread to the rest of the group. Many of the newer patients expressed fear of “ending up like her,” since she was further along with her treatment. In the psychiatric liaison meeting following the therapy session, the team decided that her participation in the group should be suspended until her emotional state improved and her side effects could be managed. In the following week, Julia’s psychotic symptoms escalated into psychosis that was marked by disorientation, incoherent speech, involuntary body movements, and visual and auditory hallucinations. Following neurological and psychiatric consultations, it was determined that Julia was suffering from an organic psychosis; her MDR-TB treatment regimen was suspended temporarily while she adjusted to increasing increments of an anti-psychotic medication (risperidone). Gradually, her psychotic symptoms subsided and it became possible to resume her treatment for MDR-TB. After two weeks, she was stable enough to be reintegrated into the psychotherapy group. It is important to note that despite significant difficulties in treatment, which resulted in a temporary suspension of her anti-tuberculosis drug regimen, Julia ultimately completed treatment, cured of MDR-TB. She, too, continues to participate in the therapy group periodically to offer support to patients still in treatment.
Psychiatric Liaison In difficult cases, such as Julia’s, the team would take advantage of the meetings following the therapy to share concerns and discuss follow-up strategies aimed at improving the emotional well-being of the patients. Frequently, family interventions were necessary when the problems affected a patient’s ability to tolerate treatment or participate in the therapy. When patients missed meetings, the team
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would review each case in an effort to determine the reasons and to devise strategies to minimize absences. Psychiatric liaison was central to the management of Julia’s acute psychotic episode. As a result of observations in the therapy group, the case was discussed in detail following the session. The discussion allowed for an interdisciplinary, multi-faceted intervention. It was agreed that Julia should be monitored closely by the nurses and promoters through daily home visits. In addition, the psychiatrist agreed to evaluate her individually in her home and coordinate anti-psychotic medications as needed and assess suicide risk. Next, a neurology consult was arranged with a specialist on the medical team. Finally, the nurses coordinated with the TB specialist physicians how to manage her MDR-TB treatment. Because one agent, cycloserine, was thought to be contributing to the psychotic episode and could not be replaced with another medication without making the regimen ineffective, her entire treatment was suspended temporarily. Ultimately, the psychiatric liaison meeting provided a forum in which to coordinate multiple services and provide Julia with comprehensive care that enabled her to survive treatment. Other meetings with the team were intended to be more reflective and instructive. When one of the patients from the group died unexpectedly, one month after its inception, the morale of the team was affected significantly. The team took advantage of the weekly meeting following the therapy group to discuss concerns and help one another to grieve in a healthy way. The team discussed the importance of being cognizant of one’s own affect as a result of working with difficult cases so as not to alarm other patients. It was necessary that the nurses and promoters were strong models, maintaining hope even when patients felt totally hopeless. In the meeting, there was a public acknowledgment of the difficulty of losing a patient suddenly who had apparently been doing well. The team had clearly been affected by her death, and solidarity within the team was reinforced. In another meeting, concerns were expressed about how some members of the health working team were getting too emotionally involved with patients, and the meeting was dedicated to a discussion of “boundaries.” The team discussed emotional limits in working with patients and strategies for professional distancing. Similar to the dynamics in the psychotherapy group, health workers were able to share their own experiences as a means to instruct others. For example, one nurse shared: It was difficult for me in the beginning. I [internalized my frustration] when a patient converted from [smear or culture] negative to positive. It affected me a lot. I felt badly. I felt like crying because I couldn’t help them. I wanted to try to help them to get over [their disease]. It wasn’t my fault, but I saw that the patient wasn’t getting better and I blamed myself for not helping him or her. It is difficult to see a patient that doesn’t get better or abandons [treatment]. I felt impotent when patients wouldn’t understand me that they had to
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take their medicines. It was very difficult for me. I felt badly. I became depressed. Little by little I started getting over it.
By initiating dialogue about the difficulties involved with working in the field, the team meetings created a space in which members were able to bring forth concerns and assist one another emotionally.
CONCLUSIONS Treatment adherence is an essential factor in the effort to curb the global epidemic of MDR-TB. First, patients who lack access to appropriate treatment run the risk of infecting others with drug resistant strains. Second, strict adherence to treatment regimens (which are lengthy and may entail severe side-effects) are absolutely essential in effecting cures for MDR-TB. Therefore, providing patients the means— biological, financial, and psychological—to comply with treatment is crucial. Because TB, in general, and MDR-TB, in particular, thrive in impoverished and resource poor settings the need for social support becomes even more important. Under these conditions, patients must struggle with extreme poverty, the extraordinary hardship caused by MDR-TB and its treatment, the grief and despair associated with the loss of family members to the disease, and, finally, stigma and social isolation. For all of these reasons, it is imperative that this widening epidemic is addressed in a way that ensures patients’ ability to comply with treatment. There is another issue, as well. While there is great concern about mortality and physical morbidity, comparatively little attention is paid to the emotional toll associated with infectious diseases. The development of effective strategies to provide psychosocial support to individuals afflicted, directly or indirectly, by infectious diseases is desperately needed. For example, even if a vaccine or a cure for HIV/AIDS were discovered tomorrow, the mental health consequences of the epidemic—the millions of children orphaned and the grief associated with the loss of tens of millions of people—would be felt for decades (Cohen, 1997). In the case of MDR-TB, even when individuals gain access to treatment, the emotional toll experienced by individuals and families demands attention. Psychosocial support for individuals and families is central to their rehabilitation and ability to live dynamic and productive lives after the completion of successful treatment. Based on the experience of SES-PIH in Peru, group psychotherapy has proven to be an effective and inexpensive method to create an integrated support system that helps patients through treatment for MDR-TB. The diversity of the group, the example of cured patients, the collective support, and the discovery of common experiences all make for powerful effects. In combination with DOTSPlus and community-based treatment, group psychotherapy has become a major component of the SES-PIH program in Lima. Most notably, no regular participant
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in the therapy group abandoned treatment. Two years after its inception, the group continues to thrive with more participants than ever. Patients that took part in the original sessions, and who are now cured of MDR-TB, continue to participate and to support patients in the early stages of treatment. The team meetings that follow each session have provided a means through which awareness is cultivated with regard to psychosocial issues, and communication has been strengthened within the team. The health promoters, nurses, and psychiatrist help one another to cope with work related stress, and improve their abilities to meet patients’ needs. This technique has been tremendously beneficial to patients, assisting them to adhere to their complicated and lengthy drug regimens. It is clear that this (and similar strategies) must, in the near future, become central to infectious disease programs around the world.
REFERENCES Adler, J. (1953). Therapeutic group work with tuberculosis displaced persons. International Journal of Group Psychotherapy, 3, 302–308. Barnhoorn, F., & Adriaanse, H. (1992). In search of factors responsible for noncompliance among tuberculosis patients in Wardha District, India. Social Science & Medicine, 34, 291–306. Becerra, M. C., Freeman, J., Celi, R., Bayona, J., Shin, S., Kim, J. Y., & Farmer, P. E. (1999). Sensitivity of passive case finding of tuberculosis in a Peruvian shantytown (Working Paper No. 2). Boston, MA: Program in Infectious Disease and Social Change. Becerra, M. C., Farmer, P. E., & Kim, J. Y. (1999). The problem of drug resistant tuberculosis: An overview. The Global Impact of Drug-Resistant Tuberculosis, 1, 3–39. Cohen, A. (1997). Broadening the mental health agenda with special reference to Eastern Africa [Proceedings of the Mental Health Symposium and the East African Health and Behavior Program Meeting] 8th International Congress of the World Federation of Public Health Associations, Arusha, Tanzania: 15–17 October (pp. 1–8). Dar es Salaam: SOSMED. Dolin, P. J., Raviglione, M. C., & Kochi, A. (2000). Global tuberculosis incidence and mortality during 1990–2000. Bulletin of the World Health Organization, 72, 213–220. Dye, C., Scheele, S., Dolin, P., Pathania, V., & Raviglione, M. C. (1999). Global burden of tuberculosis: Estimated incidence, prevalence, and mortality by country. JAMA, 282, 677–686. Ettin, M. (1992). Foundations and applications of group psychotherapy: A sphere of influence. Needham Heights, MA: Allyn and Bacon. Fanner, P. E. (1999). TB superbugs: The coming plague on all our houses. Natural History, 108(3), 46–53. Farmer, P. E., Bayona, J., Becerra, M., Furin, J., Henry, C., Hiatt, H., Kim, J. Y., Mitnick, C., Nardell, E., & Shin, S. (1998). The dilemma of MDR-TB in the global era. International Journal of Tuberculosis & Lung Disease, 2, 869–876. Farmer, P. E., Bayona, J., Becerra, M., Shin, S., Núñez, C., Nardell, E., & International Working Group on Multidrug-Resistant Tuberculosis. (1997). The emergence of MDRTB in urban Peru: A population-based study using conventional, molecular, and ethnographic methods. International Journal of Tuberculosis & Lung Disease, 1(5 Suppl), S44. Furin, J. J., Becerra, M. C., Shin, S. S., Kim, J. Y., & Farmer, P. E. (2000). Effect of administering short-course, standardized regimens in individuals infected with drug-resistant mycobacterium tuberculosis strains. European Journal of Microbiology and Infectious Diseases, 19, 132–136.
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Furin, J. J., Mitnick, C. D., Shin, S. S., Bayona, J., Becerra, M. C., Singler, J. M., Alcantara, F., Castañeda, C., Sanchez, E., Acha, J., Farmer, P. E., & and Kim, J. Y. (2001). Rare occurrence of serious adverse effects in patients receiving community based therapy for multidrug-resistant tuberculosis. International Journal of Tuberculosis & Lung Disease. Hopewell, P. C., Sanchez-Hernandez, M., Baron, R. B., & Ganter, B. (1984). Operational evaluation of treatment for tuberculosis: Results of a ‘standard’ 12-month regimen in Peru. American Review of Respiratory Disease, 129, 439–443. Hunsicker, A. L., Hurd, D. E., & Morse, D. (1967). Group psychotherapy with alcoholic tuberculosis patients. American Review of Respiratory Diseases, 95, 313–316. Kienast, H. W., Fisher, R. A., & Rodriguez, G. (1965). Psychiatric treatment of tuberculosis patients in a state hospital setting. Diseases of the Nervous System, 26, 284–287. Liefooghe, R., Michiels, N., Habib, S., Moran, M. B., & De Muynck, A. (1995). Perceptions and social consequences of tuberculosis: A focus group study of tuberculosis patients in Sialkot, Pakistan. Social Science & Medicine, 41, 1685–1692. Ministerio de Salud (1997). Tuberculosis en el Peru – Informe 1996. Lima, Peru: Author. Ministerio de Salud (1998). Tuberculosis en el Perú – Informe 1997. Lima, Peru: Author. Municipalidad de Carabayllo (1990) Primera guía turística del distrito de Carabayllo. CarabaylloLima, Peru: Author. Nardell, E., McInnis, B., Thomas, B., & Weidhaas, S. (1986). Exogenous reinfection with tuberculosis in a shelter for the homeless. New England Journal of Medicine, 315, 1570–1575. PAHO – Peru, WHO, & Ministerio de Salud – Peru (1994). Report of a review of the National Tuberculosis Control Programme: Peru. Washington, DC: Pan American Health Organization. Patronato de Lima (1992) Jornadas de Lima: Programa de toma de consiencia del centro histórico de Lima. Lima, Perú: Author. Pratt, J. H. (1907). The class method of treating consumption in the homes of the poor. JAMA, 49, 755–759. Pratt, J. H. (1922). The principles of class treatment and their application to various chronic diseases. Hospital social service quarterly, 6, 401–411. Pratt, J. H. (1945). The group method in the treatment of psychosomatic disorders. Sociometry, 8, 323–331. Styblo, K. (1984). Epidemiology of tuberculosis. The Hague: Royal Netherlands Tuberculosis Association. Sutherland, I. & Fayers, P. M. (1975). The association of the risk of tuberculosis infection with age. Bulletin of the International Union Against Tuberculosis. WHO (1996). TB/HIV: A clinical manual. Geneva: World Health Organization. WHO (1997). WHO report on the tuberculosis epidemic. Geneva: World Health Organization. WHO (1999). Global tuberculosis control: WHO report, 1999. Geneva: World Health Organization.
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Chapter
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Mental Health Promoter Training with Guatemalan Refugee Women in Mexico City and the Camps of Southern Mexico DEBORAH L. BILLINGS AND INDA SÁENZ One of the most basic elements of mental health work is the creation of trust in order to transmit hope. POP, 1997. If you came to help because you feel sorry for us and you see us as helpless victims, please don’t come. But if you came because your liberation is intricately related to our liberation, then please come and we can walk a thousand miles together—Aboriginal priest tortured in Australia. MARTÍNEZ, 1993, p. 17.
INTRODUCTION For 36 years (1960–1996) armed conflict pervaded the lives of Guatemalans. Violence, in multiple forms, was institutionalized by the Guatemalan State and used to shape the country’s social, economic, and political structures. After decades of being ruled by a U.S.-supported military dictatorship, Guatemala is now characterized by high levels of poverty, illiteracy, and poor health, an 81
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extremely skewed distribution of resources, and deep seated racism aimed at the indigenous Mayan population. Continuous, state-sanctioned violence has had a profound impact on Guatemalans in terms of their physical, mental, emotional, and spiritual well-being. Women have been affected in particular ways: they were widowed, targeted, and raped as a means of personal and communal humiliation, and forced to flee toward safety in lands other than their own (Ball, Kobrak & Spirer, 1999; CEH, 1999; REHMI, 1998). Through periods of flight and resettlement, women were the ones largely responsible for the maintenance of their families and the re-establishment of new communities in exile. Guatemalan refugee women experienced a range of violent events and, as a result, manifest a variety of mental health needs that have received little attention during their years in exile. In response, some have engaged in a process of recovery by taking on leadership positions in their communities and in movements for human rights and against military rule (Ball et al., 1999; Billings, 1995; REHMI, 1998). Others have found little or no solace given the general lack of assistance and services that address mental health difficulties. This chapter presents two models for addressing the mental health needs of refugee women and is based on work conducted over a 10-year period by the Comité del Distrito Federal de Ayuda a Refugiados Guatemaltecos (Federal District Committee for Assistance to Guatemalan Refugees—CDF). The CDF began its work in 1982 with Guatemalan refugees living in exile in Mexico City. Lessons from that experience were later applied during mental health workshops conducted in the early 1990s with community leaders in camps throughout southern Mexico. Both models focus on training community members to become lay community mental health promoters who engage other refugees in preventative mental health activities, as well as the detection and, at times, treatment of mental health problems. The promoters also serve as links to formal health services when necessary. In the training process, special emphasis was placed on the need that participants have to work through their own experiences of violence before moving on to assist others. Similar to innovative work undertaken with community members in Guatemala, Nicaragua, and the United States, among others, both models highlight the importance of providing training participants with a forum in which they feel safe to express their experiences with others in the group (Alcón, 1993; Lykes, 1994; McCallin, 1991; Métraux & Aviles, 1991; Rosenberg, 1991; Sáenz, 1991; 1994; 1994; Shackman & Reynolds, 1997). The trainings emphasized the exploration of creative ways in which to use those experiences in their work as mental health promoters. In this way, Western medical/psychological concepts of mental health and modes of treatment began to merge with local understandings and approaches for alleviating distress. The models presented in this chapter are distinguished from one another by the structure of the workshops and composition of the participants, differences that are related to the sociopolitical contexts and historical moments in which the
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different refugee populations were living at the time. In Mexico City, the CDF’s work began with women during their early years in exile, as they lived without legal documentation and were isolated from the general Mexican population as well as from other Guatemalans who lived covertly in the city. Intensive work was conducted among a small group of women over the course of four years. During this time, trusting relationships were developed among the participants from Guatemala, Mexico, and the United States, and linkages to other Guatemalans were fomented. This created a sense of belonging to a larger community. In contrast, the CDF’s work in the refugee camps in southern Mexico took place in 1992, ten years after the population had fled from Guatemala and during a time of heated negotiations regarding return to that country. Camp residents were legally recognized as refugees and a sense of community, complete with internal structures and resources, existed. These were valuable resources on which the CDF drew in its work in southern Mexico as it conducted training sessions with community leaders whose responsibilities entailed daily contact with women in the camps. The groundbreaking work of psychologist Ignacio Martín-Baró in El Salvador during the years of war demonstrated that events that radically disrupt social relationships have a deep impact on the mental health of individuals and entire communities. As social roles and relations are altered significantly or disappear, both individual and collective psyches are affected (Martín-Baró, 1988; 1990; 1994). He highlighted that in the aftermath of large-scale violence, interventions focusing solely on individual disorders are insufficient for the recovery of survivors; efforts that help to repair and re-create human relations are equally important. Likewise, psychiatrist Mindy Thompson Fullilove (1996, p. 1522), in her work on displacement and the psychology of place, emphasized that, “ ... social reintegration—reestablishing the conditions for and the sense of belonging ... must be viewed as the ultimate goal of recovery efforts.” The CDF brought this perspective to their work with refugees by recognizing the effects of trauma at multiple levels—the personal, familial, and communal—and engaging in activities that contributed to the creation of new and meaningful social roles for participants as they worked toward rebuilding their individual and collectives lives. We recognize, however, that the scope and impact of the CDF’s activities were limited and that the results presented in this chapter were only one component of Guatemalan refugees’ broader efforts toward the reconstruction of their lives, communities, and society.
BACKGROUND The Global Context of Violence and Displacement Throughout human history, social conflict has forced both individuals and populations to flee from their homes and to seek safety across recognized political
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borders. During the 20th century, however, we have witnessed some of the largest refugee movements ever recorded. In the past 25 years, millions have fled from their communities in Africa, Asia, Latin America, the Middle East and Eastern Europe due to their fear and experience of persecution in their homelands. As such, the number of officially recognized refugees in the world increased from 2.4 million in 1975 to almost 13 million in 2000, with even greater numbers of refugees in certain intervening years (UNHCR, 2000).1 These figures do not include the additional millions forced from their homes due to economic or environmental devastation. Most contemporary refugee movements originate from Southern countries when families or whole communities seek haven in neighboring countries. Once there, they often reside in “temporary” camp settlements which, with burning irony, some have called home for more than a decade (Hein, 1993; U.S. Committee for Refugees, 1993; Zolberg, Suhrke & Aguayo, 1989). An even greater number of people who have been displaced from their homes are unable or unwilling to cross national borders and continue to live within the boundaries of their own countries, leaving them largely ineligible for international assistance. In sum, displacement and exile have become integral experiences in the lives of individuals, families, and communities throughout the world and have affected the social, political, and economic order of virtually every existing society. National and international relief and assistance efforts most often focus on attending to the immediate physical needs of refugees, particularly during the initial stages of exile when food and shelter are the most visible necessities. However, the trauma of violence experienced in one’s homeland, of being forced to flee for safety, and of rebuilding a life in a new and unfamiliar environment all have a significant impact on the mental and physical health of refugees throughout the process of exile, regardless of the time spent in the host country. Yet, relatively few resources are invested by host governments or non-governmental organizations in the development of prevention and treatment-related mental health services for refugees. Programs that do exist are found most often in settings where refugees are in the process of permanent resettlement and attempts are made to integrate them into the host society. However, most refugees do not live under these conditions. In recent years, the effects of violence and displacement on the mental health of women refugees has received greater attention. Importantly, the 1995 Platform for Action, resulting from the Fourth World Conference on Women in Beijing, called for research, policies, and programs that address “the physical, psychological, economic and social effects of armed conflicts on women, particularly
1
Statistics dated January 1 of each year. Totals do not include Palestinians assisted by the UN Relief and Works Agency for Palestine Refugees in the Near East.
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young women and girls,” (United Nations, 1996, p. 90) and emphasized the importance of integrating mental health into primary-level health care services. As organizations that work with refugees develop a more gender-sensitive approach to their programs, the strength and resilience of refugee women in addressing the myriad challenges they face in supporting their families and communities and in rebuilding their own lives has been increasingly appreciated. From rearticulating expressions of cultural identity to maintaining or recreating family structure and functioning in the face of violence, loss, and dislocation, women play critical roles in the psychosocial adaptation of their families and communities in exile (Billings, 1995). This chapter focuses on the mental health work that was conducted with Guatemalan refugee women in Mexico. To more fully understand the context and challenges of such work, we turn now to a discussion of the events that compelled the flight of hundreds of thousands of people from their homes and communities.
The Guatemalan Conflict The impact of political violence in Guatemala has been devastating. Ever since the 1954 US-orchestrated military coup against the democratically elected government of Jacobo Arbenz, military regimes and repression have dominated the political, economic, and social landscapes of Guatemala. During the 1960s, armed insurgency groups formed to oust military dictators from the leadership of the country, and labor unions, student movements, campesino (peasant) organizations, and Liberation Theology advocates were active in demanding social justice. In response, the State implemented a strategy of mass terror that lasted at least 30 years (CEH, 1999). The methods employed in this campaign included torture, executions, disappearances,2 and massacres, as well as immunity from persecution for the perpetrators, criminalization of victims in order to legitimize repression, and forced participation of civilians in acts of political violence. For example, the Army created the Civil Defense Patrols (PACs) as part of its counterinsurgency campaign in rural communities to eradicate the guerrilla movement. An estimated 500,000 to one million men, mainly indigenous Mayans, were forced to serve as informants to the Army and to engage in military operations. Creation of the PACs effectively militarized communities from within, while strengthening and extending the Army’s reach without the need to station
2
“To be disappeared” is a term that originated in Guatemala and refers to the kidnaping of a victim who is never seen or heard from again. This practice leaves family members and friends in a constant state of uncertainty regarding the victim’s fate. See (Manz, 1988; Simon, 1987).
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troops throughout the country (Jay, 1993; Kobrak, 1997). Avenues for political organizing were largely closed; the expression of ideas critical of the State or the reporting of social realities brought with them the threat of repression. Throughout the years of armed confrontation, more than 200,000 people were killed or disappeared and approximately 626 massacres were carried out (CEH, 1999).3 Almost half of all human rights violations and acts of violence were committed in the northern department of El Quiché, particularly in the region known as the Ixcán, where agricultural cooperatives flourished during the 1970s. More than four-fifths of the fully identified victims were of Mayan origin (Ball et al., 1999; CEH, 1999). State forces and related paramilitary groups, including the National Police, the Treasury Police, “Death Squads,” and the Civil Defense Patrols, were responsible for virtually all of the human rights violations. An estimated 1.5 million people, or 80 percent of the population of the departments of El Quiché, Huehuetenango, Chimaltenango, and Alta Verapaz, were forced to flee from their homes. Most fled in the period from 1981 to 1983, when the State’s counterinsurgency operations were at their peak (AVANCSO, 1992; CEH, 1999; GHRSP, 1992; Manz, 1988). Many survivors went to Guatemala City or the Southern Coast in search of safety, work, and anonymity. Some remained together in cohesive, yet mobile villages known as the Communities of Population in Resistance (Comunidades de Población en Resistencia—CPR’s), and lived in constant flight from the Army. Others turned themselves in under an amnesty decree and lived in Army-controlled “Model Villages” (Manz, 1988). Survivors who crossed international borders to seek safety went predominantly to Mexico and the United States. Most were campesinos, subsistence farmers, from the highlands of El Quiché, Huehuetenango and Alta Verapaz and El Petén where they owned small parcels of land on which they grew corn and beans (milpa). Those fleeing from the lowland Ixcán area were members of successful agricultural cooperatives targeted by the military. Many men and women had once engaged in seasonal migrant labor to Chiapas, Mexico, and Guatemala’s southern coast to earn minimal wages. Of those who fled to Mexico, approximately 80% were indigenous Mayans who represented eight of the 22 predominant ethnic/language groups in Guatemala. The remaining 20% were ladino.4 Most of those fleeing traveled in groups because the military targeted entire communities for destruction. Of an estimated 150,000 to 250,000 refugees in Mexico, only 46,000 were granted
3
This estimate combines data from the Commission for Historical Clarification and other studies of political violence in Guatemala. 4 “Ladino” refers to individuals of combined indigenous and European (usually Spanish) ancestry or individuals born as indigenous who have rejected self-identification as such in terms of manner of dress, language, community life, and general worldview.
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de facto, prima facie refugee status by the United Nations High Commissioner for Refugees (UNHCR) and the Mexican Government (CEH, 1999).5 Those with legal status lived in a series of 127 camps situated along the Chiapas-Guatemala border, as well as in seven large camps located in the states of Campeche and Quintana Roo. Settlements in Chiapas, which varied in size, ethnic and religious composition, and degree of internal organization, were constructed by the refugees themselves, with some assistance from Mexican campesinos and the Catholic Church. Camps in Campeche and Quintana Roo were built by the Mexican government during its forced resettlement of the refugees to these sparsely populated states. During 1984, over 12,000 people were relocated to Campeche and some 6,000 to Quintana Roo where they were provided with land, credit to build homes and to plant, concrete lots, and water systems. Thus, the physical living conditions were superior to those in most Chiapan camps in which access to potable water and firewood was difficult, food aid was minimal, and land was scarce. Yet most refugees wanted to stay in Chiapas where they could see the mountains rising from the Guatemalan soil and where the ethos of the culture—the smells, colors, landscape, and sky—remained familiar (Geertz, 1973). Return to Guatemala, the hope of many refugees, always seemed more probable and palpable from Chiapas. The majority of Guatemalans who did not acquire official status as refugees have lived a precarious existence, particularly in southern Mexico and Mexico City (O’Dogherty, 1989; Salvadó, 1988).6 In many ways the challenges that they have faced in exile are similar to those faced by Guatemalans living in the camps, but the need to hide their identity so as not to risk deportation and their more pronounced isolation added a dimension that needs to be taken into account when comparing the recovery processes of the legal and illegal refugees.
Violence, Displacement, and Mental Health Silence that is imposed upon survivors is a key theme in the lives of those who experience war and displacement. From the country level to the individual level, the ability to denounce injustice and to speak truthfully about socioeconomic and political conditions is repressed in a variety of ways ranging from explicit
5
De facto refugees are those whose applications for asylum have been rejected, or who never applied for asylum but whose settlement is accepted on humanitarian or political grounds. Prima facie signifies that refugee status is granted to an entire group rather than on an individual basis. Using these criteria, the Mexican Government officially recognized only a small proportion of Guatemalans as refugees; all were based in southern Mexico. 6 We apply the term “refugee” to all Guatemalans who fled the violence, whether or not they were officially recognized as such.
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military force to fear of reprisal. Guatemala has been described as “a country silenced, a country incommunicado” (CEH, 1999, p. 29). Alice Partnoy (1986), a survivor of Argentina’s torture centers, describes the constant effort of the guards to “cut off her voice.” Another striking example was offered by a priest and nun in their testimony to an Amnesty International delegation in 1985 in Guatemala: You must watch their eyes. No one will talk. You must try and see what they may be trying to tell you with their eyes ... If you try to go [to the countryside] ... the thing that will most move you is the silence. They will not talk to you because to talk would mean risking their very lives, and the people are already terrorized and prefer not to talk (Simon, 1987, p. 87).
For many women in the world, silence is a part of their everyday lives as poverty, domestic isolation, low levels of education, and economic dependence prevent them from having a strong voice in familial and other social settings. For example, Afghan women under the Taliban regime were prevented from leaving their homes, working outside of the home or even seeking medical care on their own. The silences that accompany war and its atrocities are layered upon women’s lives in such a way that many suffer from trauma and stress, but never speak of it or seek help for its relief. Of the major war-related causes of trauma and silence for women, rape, and other forms of sexual violence are among the most important. These acts are used to terrify, humiliate, and silence women, their families and their communities. Throughout the world, women are targeted in their home countries, e.g., El Salvador, Thailand, Argentina, and Rwanda, as they flee across borders, and even within the illusory safety of refugee camps (Aron, 1992; Ashford & HuetVaugh, 1997; Human Rights Watch, 1996; Forbes Martin, 1995; MacKinnon, 1993; Partnoy, 1986; Swiss & Giller, 1993). Rape has been used as a weapon of war throughout history and, in recent years, has received wide attention as one of the most under-documented forms of human rights violations during conflict (CRLP, 1996; UNHCR, 1994). As is the case of rape survivors in general, the speech of women who are raped during war is often “prohibited, categorized as mad or untrue, or rendered inconceivable” (Alcoff & Gray, 1993, p. 265). There are often severe social consequences including rejection by family members and friends, particularly if the woman becomes pregnant because of the rape. Unwilling to disclose their experience, feeling shamed and fearing repercussions from husbands, family members, and the wider community, these women may manifest psychosomatic symptoms such as extreme sadness, depression, anger, loss of appetite, fear, and hopelessness (Friedman, 1992). Women experiencing rape have a greater likelihood of developing post-traumatic stress disorder than other civilian survivors. Characteristics of this disorder include nightmares, insomnia, increased startle response, shame, social alienation, sexual difficulties, and restriction of daily life activities.
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In Guatemala and in the exile community in Mexico, an unknown number of women and girls experienced or witnessed rape or some other form of violence aimed specifically at women. Sexual violence against girls and women was used by the Army and related forces to destroy individual dignity and collective identity and to discourage collaboration with guerrilla forces. In recently published documents, including the Report of the Commission for Historical Clarification (CEH, 1999) and the four-volume report by the Recuperation of Historical Memory project sponsored by the Guatemalan Archdiocese (REHMI, 1998), the rape of women was highlighted as a practice used particularly during the counterinsurgency period (see also Ball et al., 1999). In an interview conducted by one of the authors, Berta, a 32-year old Mam woman who fled from the northern cooperatives, relates her account of mass rape: There were some women that they [the army] grabbed in the mountains, to rape (chingar) them. These women were going to die. Their legs were wide open and the soldiers raped them. They carried their weapons and threw the woman down and then climbed on top of her to rape her. One would get up and the other would go down; another would get up and another would go down ... If the army found a woman, they would rape her. They’d grab her, rape her, and then kill her. Just like that (Billings, 1995, p. 71).
Shame and guilt are two common experiences as survivors of political repression ask why and how they lived when so many others perished (Kinzie, Sack, Angell, Rath & Manson, 1986; Kordon & Edelman, 1988; Myerhoff, 1978). These feelings are sometimes accompanied by psychosomatic symptoms, as in the case of one Guatemalan refugee man who had suffered from back pain for ten years after fleeing from his home. When interviewed by one of the authors and asked how the pain began, he related the story of his community’s exile. When the army arrived, soldiers began killing residents and burning their homes. The villagers tried to escape by fording a river. The man joined them, carrying his small son on his shoulders. Upon arriving on the other side, the man discovered that his son was dead, shot by the soldiers as they crossed the river. The boy’s blood covered his father’s back. The man had never forgiven himself, saying that if he had carried his son in front of him, the boy would not have been killed (Sáenz, 1994). According to Summerfield (1991), somatization of distress is a central aspect of a survivor’s subjective experience and serves as a means of communicating the pain provoked by the violence and subsequent separation from one’s country. Corporal expressions of emotions take the form of recurrent headaches, generalized physical pain, inexplicable illness, dizziness, and heart palpitations. Among Nicaraguan campesinos, Summerfield found, that while they sought medications that would alleviate their physical distress, they clearly defined its origin in the tension caused by war. Yet they did not know of, or had no recourse to, resources that would address the mental and emotional dimensions of their suffering, and, thus, could attend only to the physical effects.
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A review of studies of mental disorders across societies and social contexts reveals that women, more than men, suffer from depression and anxiety. This has led some to hypothesize than women tend to internalize distress while men externalize it through aggressive behavior and substance abuse (Desjarlais, Eisenberg, Good & Kleinman, 1995). The expression of depression and anxiety is often realized in “local idioms of distress”—“nerves,” “attacks,” “heaviness of the heart” and intrusions by unwanted “spirits” (Desjarlais et al., 1995). This pattern is repeated in refugee situations throughout the world. Farias (1991) and Jenkins (1991) document the problems experienced by refugee women from El Salvador living in New England. In both studies, the relationship between state-sponsored violence and terror and manifestations of psychological distress are clear. Indigenously defined conditions of susto (fright) and nervios (nerves) were used consistently by women as they described the short- and long-term effects of having witnessed and experienced violence in a variety of forms. Depressive episodes characterized the lives of most women in the studies; chronic depression was experienced by a smaller number of women. Sorrow, loss, hopelessness and helplessness were also commonly expressed and exhibited in somatic terms— insomnia, headaches and other pains, fatigue, general corporal pain, and lack of appetite, among others. Throughout the world, the same pattern has been noted among refugee populations. For them, somatization is the subjective expression of trauma, emotional pain, or loss (Kinzie et al., 1986; Kleinman & Good, 1985; Kroll, Habenicht & MacKenzie, 1989; Métraux & Aviles, 1991; Mollica, Wyshak, Lavelle & Truong, 1990; Summerfield, 1991; Westermeyer, 1989). Such manifestations of distress occur not only at the initial stages of exile but also appear years after the trauma is experienced. Recognition of the root causes of individual and collective psychosocial trauma, as well as the impact on everyday women’s lives, are among the most important issues to be addressed in mental health work in refugee settings. To do so entails listening to women—about their history, their daily lives, and their health needs—so as to develop strategies that provide women with the tools to work toward recovery. As Mary-Jo Good (1999, p. 4) notes, “the myth that poor women cannot or will not speak for themselves must be dispelled.” Providing refugee women with a space and context in which to share and validate their experiences and history so that their individual and collective silences can be broken is critical to the process of building and re-constructing women’s lives.
Approaches to Mental Health Work in Contexts of Violence and Displacement In recent years, an extensive body of literature, documenting a range of methods, has emerged about mental health work in the context of violence and displacement.
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Much of the research, however, has been conducted within the realm of recovery centers, hospitals, and universities in the United States, Canada, Europe, and Australia. In these settings, the medical model of care dominates: individual victims are treated by mental health experts within an institutional context (Holtzman & Bornemann, 1990; Saenz, 1994; 1994; UNHCR, 1991). Only more recently have contextual factors, such as the community in which the survivor lives and the degree to which she is active in re-building social ties, been considered as central to the therapy process. For example, psychotherapy has been employed with torture survivors and families of the disappeared from South America who lived through the dictatorships of the 1970s and 1980s. Psychoanalytic methods—somewhat modified to add a political dimension—have also been used in working with individuals and groups (Becker, Castillo, Gómez & Salamovich, 1990; Deutsch, Hoffnung, Speyer & Viñar, 1991). In Latin America, however, professional and institutional resources for mental health are scarce (Alarcón, 1986; Imaz, 1997). Farías (1997) notes that in Mexico there are, on average, 0.8 psychiatrists for every 100,000 inhabitants, and most are concentrated in Mexico City.7 In Chiapas the ratio is 0.1 to 100,000. In addition, most psychiatrists are in private practice or work within hospitals, making them largely inaccessible to most people in the population, particularly those with limited incomes. In general, calls to de-institutionalize and integrate psychiatric services into primary health services have been made, but not heeded (Levav, 1993). Given such limitations, the one-on-one model of therapy for survivors of violence and displacement may not be feasible or effective in certain contexts. Sáenz (1994) indicates that approaches which focus on individual symptoms but do not consider the sociopolitical and cultural contexts as important to understanding both distress and its treatment may not be effective in diverse populations in crisis, such as the Guatemalan refugees. Instead, drawing on nonprofessionals from within the refugee communities to engage in mental health work has a number of potential benefits. These include the creation of meaningful social roles for survivors in their new settings, the opportunity for participants to engage in an intensive collaborative process of recovery, and the development of new sources of social support. Five main elements necessary for the success of programs that train nonprofessionals in mental health work emerge from examples reviewed below (see also Martínez, 1993): 1. Train respected community members in mental health. Training should be conducted by professionals who are able to make a commitment to provide support and back-up to newly trained promoters.
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WHO’s recommendation is 5 psychiatrists for every 100,000 inhabitants.
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2. Draw on local and Western concepts of mental health and illness and methods of treatment and link these throughout the work of training and attending to needs. 3. Recognize people as survivors and members of active groupings or communities with whom trainers create collaborative support systems and engage in a process of mutual learning. 4. Develop a forum (both during the training and the subsequent work of the promoters) in which people can interact and feel safe to listen to and narrate not only their experiences of trauma and violence, but also of joy and hope. Given that silence often is imposed during reigns of terror, it is important that survivors can validate their histories and have them be publicly confirmed without fear of reprisal. However, such work should be conducted only when individuals are ready to do so. Feeling coerced to tell one’s story may cause more damage to the individual. It should be noted, however, that the appropriateness of verbalization of anguish, distress, and problems is culturally relative and may not be appropriate in all settings, particularly those in which notions of catharsis, confession, and redemption are not prevalent (Desjarlais et al., 1995). 5. Link the processes of narrating and listening to larger projects related to the development of new social roles that allow survivors to engage in meaningful activities and to establish new sources of social support.
Throughout the world, mental health projects for people who have experienced violence and subsequent displacement have put these five elements into practice. The result has been a wide range of innovative activities. Robert Jay Lifton (1967), in his work with survivors of Hiroshima and the World War II Holocaust, found that the act of sharing one’s experiences in a setting that was validating was key to recovery. Judith Herman (1992, p. 70) notes, “sharing the traumatic experience with others is a precondition for the restitution of a sense of a meaningful world,” be they survivors of rape, massacre, torture, or natural disaster (see also Bode, 1989; Myerhoff, 1978). Recent experience with survivors from the holocaust in Cambodia indicates that the search for meaning— at both individual and communal levels—is among the most daunting challenges facing contemporary society in its process of mass recovery (Somasundaram, Van de Put, Eisenbruch & de Jong, 1999). Adrianne Aron has used similar techniques in her work with Salvadoran refugees in the United States. She uses the term testimonio, and defines the approach as a “first person account of one’s life experiences, with attention to the injustices one has suffered and how one has been affected by them” (Aron 1992, p. 172). It is “based on the belief that to heal, individuals who have been victimized must regain the power to direct the course of their lives” (p. 174). Key to the success of testimonio in the recovery process is the ability of the speaker to define
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herself as a survivor rather than a victim, that the personal experience is linked with that of the wider community, and that the act of telling is experienced as an act of restoring self-worth and a sense of membership in a community. Chilean psychologists Elizabeth Lira and Eugenia Weinstein (Weinstein, 1987) have also used testimonio in their work with survivors of Pinochet’s atrocities during the 1970s and 1980s. While testimonio has been criticized as clashing with cultural beliefs and practices, it has been used throughout Central and South America as a therapeutic technique both within and outside of the clinical context (Desjarlais et al., 1995). Interestingly, it has been used most often by women who, prior to political repression, had not been publicly vocal and active regarding issues of social justice and human rights. Nonetheless, compelled by personal injury and loss, collective destruction, and a strong desire to change the conditions of their lives, these same women have come forward in social movements.8 Mental health is a major theme in the process of sharing and working through the stories of survivors. Community-based mental health resources have been developed in a variety of settings. In the post-apartheid period in South Africa, mental health is being incorporated into primary health care services and a variety of methodologies for treatment of trauma are being put into practice. This is particularly important for multicultural societies where Western and local concepts and approaches can be used in combination. For example, the Zionist Church in South Africa has been successful in implementing trauma interventions and strengthening communities in part because of its “grounding in prophetic revelation congruent with Xhosa and other African peoples’ theological notions of cleansing and the casting out of evil forces” (Chapman & Rubenstein, 1998, p. 172). In Guatemala and Argentina, Brinton Lykes and colleagues (Lykes, 1994; Lykes, Maciel, Iborra, Suardi & Costa, 1991) have developed a community-based intervention that focuses on children and their recovery of history, self-esteem, and sense of belonging during and in the aftermath of political violence. Miller and Billings (1994) adapted the workshops developed by Lykes to conduct ongoing training with education promoters in two refugee camps in Chiapas, who then directed a series of structured activities with students to explore their fears and anxieties related to returning 8
One of the largest projects to use testimonio in the process of recovery is the Recovery of Historical Memory Project (REHMI), initiated in 1995 prior to the peace accords in Guatemala. The project was established by Bishop Juan Gerardi, auxiliary bishop of the archdiocese of Guatemala and founder of the Archbishop’s Human Rights Office (ODHA). Bishop Gerardi was assassinated on April 26, 1998, two days after his public presentation of the project’s findings in the report, “Guatemala Never Again” (REHMI, 1998). The Catholic Church subsequently assigned Monsignor Mario Rios Montt, brother of General Efrain Rios Montt, whose time in power was the bloodiest period in Guatemala’s 36-year civil war. Since Bishop Gerardi’s death, the REHMI project has continued, but without the commitment to revealing the truth that characterized it originally.
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to Guatemala, a country they knew only through stories of massacres and destruction. A Spanish language training manual and accompanying training video were produced to broaden the reach of this program. Shackman and Reynolds (1997) describe the components of a successful training in counseling and mental health work with the displaced from Bosnia. Local Serbo-Croatian volunteers participated in activities to help ease the distress of survivors, particularly women, many of whom had been raped before or during their flight from Bosnia. Likewise, women leaders in camps in Tanzania set up Drop-in Centers for Burundian refugees, and were trained as counselors to women who had experienced sexual and gender-based violence (Nduna & Rude, 1998). Other important examples of community-based work with survivors of political violence include McCallin’s (1991) work with women refugees from Mozambique in Zambia and from El Salvador in the United States; Rosenberg’s (1991) work with Central American refugees in Baja California; Métraux and Avile’s (1991) work in Nicaragua with mental health professionals and non-professionals who focused on recovery efforts with children; and the work Somasundaram and colleagues (1999) in Cambodia with traditional healers and the formal health care system. All illustrate that non-professional community members can be trained to offer effective basic mental health services to other survivors of political violence. They are able to detect problems and to offer culturally-appropriate services. When necessary, they are able to direct people to other resources that could be helpful to them.9 The following sections discuss the work of the CDF with Guatemalan refugees in Mexico City and southern Mexico. One of the most common themes is that exile is a social experience during which “ruptures with the dominant culture” (Martín-Baró, 1994) shape the lives of all refugees. Such disjuncture is accompanied by concurrent attempts to reproduce social relations as they previously existed and to re-create and redefine social relations, including gender relations. Women are at the center of this dynamic; some become more isolated than they were in their homeland; others use the new social space to grow in ways they had never imagined. In either case, the tension of trying to maintain identity while at the same time reformulating it has an impact on the health of women.
MENTAL HEALTH WORK WITH GUATEMALAN REFUGEE WOMEN IN MEXICO CITY During the 1980s in Mexico City, a large gap existed between the mental health needs and the services that were available to refugees from El Salvador and 9
Similar approaches have been developed among populations affected by natural disasters in order to help survivors manage their grief and loss (Chemtob, Tomas, Law & Cremniter, 1997; Desjarlais et al., 1995).
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Guatemala (Bottinelli, Maldonado, Troya, Herrera & Rodríguez, 1990). Throughout the 1980s and until 1993, the Servicios Técnicos (SERTAC) of the UNHCR referred persons requesting refugee status to professional mental health services when problems were detected, but the primary source of mental health services was the CDF. From 1982 through 1992, the CDF engaged in a range of activities, including policy work, with funding from international assistance agencies. CDF also maintained a commitment to incorporating a gender perspective into its work. This was exemplified in its projects, such as the marketing of crafts produced by widows and the mental health training work with women. Described as “an independent religious group ... with a non-sectarian stance” (Harrington, 1994, pp. 21–22), the CDF began its work in 1982, when the largest wave of refugees from Guatemala arrived in Mexico City. One of its earliest projects was to provide temporary housing that the refugees would manage themselves. With the assistance of various religious communities, the CDF purchased one house, known as El Pájaro Azul (the blue bird), and rented another for both living and meeting space. The houses were located in one of the metropolitan area’s largest and poorest communities, Ciudad Netzahualcóyotl. In 1983, the CDF worked in collaboration with international organizations, especially CONCERN America, to initiate a weaving project so that the women in the house could use their skills and artistry to earn money. Education and consciousness-raising were incorporated into the project—every piece sold was accompanied by written material describing the violence in Guatemala and how each artist was affected by it. During the initial emergency stage of exile, attending to the mental health needs of the refugees was difficult. According to Marie Moore, one of the founders of the CDF, the lack of mental health services was only part of the problem. That the need for such services were considered a sign of weakness by some in the Guatemalan community was equally important: Psychological attention, in that historical moment of the Guatemalan struggle, was explicitly seen as secondary, if not distracting, a bourgeois luxury and only for the weak (read “women”). With those labels, even the mere wish for psychological help was taboo. What was permitted, however, was pastoral attention, prayer services, and reflections. Undoubtedly these provided spiritual, emotional spaces and positive bonding experiences where words and rituals brought what was silenced to visibility and confirmation (quoted in Harrington, 1994, p. 31).
Moving toward a model of mental health within the community, therefore, was a gradual process and one that required a strong commitment to work with community members in a consistent and long-term manner. Given the sentiments captured by Moore’s summary above, it is not surprising that women, rather than men, took the lead in the mental health-related activities. In 1984, Barbara Harrington, a Dominican Sister from Boston, joined the CDF and organized a group of Guatemalan refugee women, both Mayan and
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ladina, to reflect on their experiences and to address the isolation they felt in Mexico City. The general objectives were to identify the most common emotional problems among the women and to provide mutual support and help, so that, in turn, they could offer support to other women and their families living in similar situations. As noted earlier, most Guatemalans living in the city were not legally recognized as refugees. Moreover, they arrived without a social network that could orient them to the intricacies of daily life. Hiding their identity as Guatemalans and “becoming Mexican” in their dress, manner of speaking, and mode of acting was, for many years, their main survival strategy. As Harrington (1994, p. 20) notes: Unlike the refugees in the southern camps who had gained international attention, these refugees saw their greatest ally not in their visibility, but in their invisibility. They lived dispersed, undocumented, attended to individually but not as a specific population. They lived in constant fear of reprisals and deportation. They lived on the margin of the law.
One participant, Vicki, described her experience in Mexico: I had to hide my identity and that of my daughters so we wouldn’t be easily identified. This was terrible. I took off my traditional dress [traje and huipil] for the same reason. I started to be in contact with people who had other kinds of ideas. I realized that I needed to learn Spanish to be able to communicate with others. [In Mexico] most days I felt sad, depressed, desperate. I didn’t accept being in exile (Johnston, 1994, p. 30).
In her reflection, Vicki encapsulates the challenges faced by many Guatemalan refugee women in Mexico City: fear and isolation, the loss of social relations, community and, even, their identity—as illustrated by the need to speak Spanish rather than her native language and to stop wearing her own clothing. The first product of the initial meetings of Guatemalan refugee women at the CDF was the booklet, “Sharing Our Experience” (Compartiendo Nuestra Experiencid), which was produced over an eight-month period and shared with women just arriving in Mexico City. The book reproduced women’s stories without explicit analysis. Harrington writes: The world was split open, but no one felt able yet to look inside and analyze it. Holding the booklet in their hands, seeing their own work, was an incredible impetus toward their finding ways to help other women as well as to explore their own identities. This work really seeded the mental health project (1994, p. 40).
The mental health program emerged out of this initial work and was based on the expressed needs of refugee women themselves. By late 1986, the idea of developing mental health promoters from within the community began to bear fruit. What began as a one-year training workshop for Guatemalan women to
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become mental health promoters evolved into a four-year training program. Thirteen women from a variety of ethnic/language groups (including Quiché, Kanjobal, Mam, Jacalteca, and Ladina) participated in the first mental health workshop in 1986. This was the first time that most women from these different groups had interacted as peers and friends. Recognizing the isolation and fear that many refugee women experienced in Mexico City, the first stage of the CDF work focused on the need to establish a safe space where trust could be built among the group members. Sharing experiences and validating memories were essential to individual recovery, as well as for affirming and maintaining group members’ histories. No attempt was made to place memories in a distant past to be forgotten. One of the original participants stated, “In mental health, the idea is not to silence yourself. Here I have to think, remember, speak, enter into discussions, reflect and act” (quoted in Harrington, 1994, p. 52). Various techniques were used to build trust among members of the group, the most important being testimonio (see above) and “active listening.” The latter has three components: identifying a problem or issue, identifying and exploring how the speaker feels about the problem or issue, and offering support to resolve the problem. Participants used testimonio and active listening to lend support to one another in their own process of recovery while at the same time refining their skills in using the techniques in their work as mental health promoters. Participants were considered survivors building toward a future rather than victims. Open-ended questions about women’s lives initiated the work with participants, who emphasized the hard work of recovery: To obtain or to look for a way to improve mental health is not an easy thing. It’s very difficult, painful and heroic work. One has to look at the deepest level. It involves taking off the crust, opening up, bleeding and washing the wound that each one of us has. It means talking about our losses and repeating the pain of everything that has left us as orphans and widows (CDF, 1994, p. 4).
Another participant related her initial experience: I can’t tell you for how long I resisted the process of transforming my own pain. One day in the training session we were to identify ourselves with one of four goddesses. Most of us literally ran to identify ourselves with the goddess of sacrifice. Seeing us all bunched up in that corner really shook me up. That was a turning point for me. Outwardly I wanted to be an exemplary victim for the cause; inside I was a bundle of confusion at the point of rebellion (quoted in Harrington, 1994, p. 53).
The group of thirteen women met for four years (four hours each Saturday for 40 weeks per year). In the sessions, participants discussed a wide variety of issues including exile, human sexuality, the role of the mental health promoter, signs and symptoms of physical and psychological illnesses, and the use of such
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methods as interviews, observation, and community assessment. Training materials from other countries experiencing political violence, e.g., South Africa, were introduced and adapted in order to broaden the participants’ perspectives and to link their personal experiences with those of others affected by political violence in other parts of the world. Throughout the process of becoming promoters, the women faced numerous challenges given the heterogeneity of the group in terms of language, ethnicity, literacy skills, religion and sexuality. Such variety also existed in the wider refugee population. However, participants defined four key elements that enabled them to continue the training as a cohesive team. All of them were: 1) Guatemalan women; 2) refugees; 3) committed to speaking about their lives; and 4) committed to listening to the experiences of each other. These similarities were recognized over time by everyone in the group, which helped to bridge the wide array of experiences and backgrounds of the participants. In this way, new levels and forms of community and identity were being created in exile, accompanied by new ways of belonging to social entities that gave meaning to women’s lives (Fullilove, 1996).
Impact of the Mental Health Training The impact of the mental health training is best analyzed on two levels. On the individual level, Vicki, the promoter cited earlier, noted the impact her participation in the CDF group and training process had on her life: In 1986 I was invited to a meeting organized by the CDF. It was hard to go but I went to see what the meeting was about. It was about mental health, but I didn’t know what that was. I was still so upset. They talked about the importance of having a space for women who were affected by political violence. When the meeting ended, I knew a few more women. I felt clearer, more content. I realized that I didn’t have a space to talk about my feelings and problems. Little by little, I became part of the group, and I discovered the importance of the training we received for four years to become mental health promoters. I realized that to be a mental health promoter my own wounds had to heal in order to help others affected by political violence. It was very helpful to me to deal with a number of themes during our training. This strengthened me so that I could change my life and that of my family. Mental health made me stronger, able to see problems in a new light. [Since my graduation] I’ve had a responsibility to fulfill in the community. I’ve been invited to participate in workshops and to give workshops in the refugee camps [in southern Mexico]. At the same time, I’ve had the opportunity to work with an institution, the CDF, where we started a program for the parents of Guatemalan refugee children.... As time goes on, I’m accepting the past, while living in the present. You shouldn’t discard the past, but we need to use it as a tool to build a new life (Johnston, 1994, p. 31).
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On the community level, the CDF’s work to train community members to become mental health promoters facilitated access to primary mental health services for some refugees, albeit to a limited extent given the small number of women who became promoters. Those who completed the program described the impact of their training and the reasons why they have been able to take on this work: Our participation and interchange of experiences with other groups of refugees and Guatemalan promoters has enabled us to get closer to our own people. Having suffered and lived through the same experiences, to be able to feel what someone else is feeling, to know the customs and speak the same language, these are things that enable us to get even closer (CDF, 1994, p. 5).
Six women completed the training developed through the CDF. Five of them continue to work in the field, where they coordinate mental health programs in a variety of non-governmental organizations that work with the refugee and returnee populations in Mexico and Guatemala. The activities of the mental health promoters who completed the CDF training included: 1. Monthly mental health workshops with 35 Guatemalan refugees, both men and women, living in a rural area in the state of Puebla. The workshops were conducted over a two-year period. The promoters played an important role in the detection of problems related to child development and linking parents to health care services when necessary, as well as in the presentation of didactic sessions on family life, human development, sexuality, alcoholism, and psychosomatic signs and symptoms. 2. Mutual support sessions among elderly refugees from throughout Central and South America living in Mexico that addressed items of interest to the group members. The sessions were held through SERTEC-UNHCR. 3. Monthly meetings for 40 Guatemalan refugee boys and girls and their parents at the CDF. 4. Mental health workshops held in different camps in southern Mexico with women, children, and adolescents as well as mental health training workshops described in the second half of this chapter. Mayan promoters trained by the CDF played a very important role in these workshops since they spoke the languages of the people in the camps and, as women, motivated other refugee women to participate.
Overall, the CDF work in Mexico City resulted in the development of new women leaders within the Guatemalan exile community. The mental health promoters engaged in a process that enabled them to articulate their experiences of trauma in a safe setting while, at the same time, participating in the creation of
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new social roles, social support, and meaningful work within the larger refugee community in Mexico.
MENTAL HEALTH WORK WITH GUATEMALAN REFUGEES IN SOUTHERN MEXICO In 1992, the CDF extended its mental health work to the camps of southern Mexico. While the model of mental health work utilized in the camps retained the same principles and goals of the work in Mexico City, the structure and content were necessarily different. Refugees in the camps were generally receptive to learning about and working on issues of mental health. This interest, in part, was a product of many years of work with people from national and international organizations who sponsored training workshops that enabled community members to become education and health promoters. Thus, the refugees were open to new ideas that would strengthen their work within communities. Furthermore, while the CDF attempted to maintain its focus on women’s mental health, this became more difficult in the camps, since most refugees who participated in the workshops were men. Many women were excluded from activities due to their lack of literacy skills and lack of mobility, factors that limited their ability to participate in the training to become mental health promoters. The following sections describe the model of mental health training used with community leaders in the camps of southern Mexico. We begin with a discussion of women's lives in the camps to illustrate the particular problems and challenges they faced in exile, experiences which help to explain their limited participation in the workshops.
Women’s Lives in the Camps While in Guatemala, the Mayan population had little or no access to formal schooling. Data from 1987 indicate that only 24% of all Mayan school-age children were enrolled in school in Guatemala (Tidwell, 1993). Of the few who did attend classes, the majority were, and always have been, boys and young men. Thus, the Mayan refugee women were poorly educated and most were illiterate.10 Their lack of education also meant that they were unable to speak Spanish. A survey of Guatemalan refugee women living in camps in Chiapas demonstrated that one of the most significant changes in women’s lives in exile had been their increased access to education, through schools run by the refugees 10
The lack of education for women is widely associated with poor child health, high fertility rates, and increased maternal mortality. See, for example, LeVine et al., 1991; Victora, Huttly, Barros, Lombardi & Vaughan, 1992; King & Hill, 1993.
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themselves and workshops sponsored by the Catholic Church and nongovernmental organizations. Tables 1 and 2 illustrate two points: that younger women have significantly more education than do older women and that the youngest women (age 12–19) attained their schooling in Mexico. Significant barriers existed to women’s education, such as women’s daily responsibilities for childcare. Women also remained responsible for other work that needed to be done in the domestic sphere—feeding and clothing the family, tending to animals and the family garden, and hauling water, among other activities. This work was often undervalued by both men and women, particularly since it did not bring in wages (Billings, 1995). This study also revealed that 67 percent of all women had no formal education; this rose to 78 percent for women with children. Younger women, overall, had greater access to education and had relatively more education than their mothers and grandmothers—although girls continued to have less education than boys. Literacy and Spanish-speaking skills were highly correlated with formal education. Significantly more women between the ages of 12 to 19 were able to read, write, and speak Spanish than women aged 20 and over (Billings, 1995; Mamá Maquín, 1994). In sum, the younger women who had been raised in the camps had significantly higher levels of education than their mothers and grandmothers.
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In exile, it was common for men to use physical violence to control women. While no precise figures are available to document the prevalence of domestic violence in the camps, women spoke of it, often reluctantly, as a problem in their lives (Billings, 1995; Mamá Maquín, 1994). Wives and daughters who wanted to attend meetings and participate in projects were sometimes hit and forbidden to leave the home, as some men believed that, “these [were] nothing but places for women to meet other men” (Billings, 1995). Many men also objected to the reality that women’s participation outside of the domestic sphere often led to questioning and challenging established gender relations. Other studies of refugees document the existence of heightened domestic violence in exile as men attempt to re-establish control and gain power in their new settings (Forbes Martin, 1995; Friedman, 1992). To better understand refugee women’s physical and mental health, one of the authors and a colleague conducted interviews with 48 women in two camps in Chiapas (Billings, 1995).11 Results from the interviews are presented in Table 3. What stands out is the high prevalence of physical and mental ailments reported by women for all of the conditions listed. These results are consistent with studies conducted with refugee women in other contexts. When women were asked whether they felt worthless, 56% stated ‘yes.’ This response was most often accompanied by comments related to women’s economic dependence on men. Women commented: “When I cry I say to myself, ‘what a shame that I am a woman. If I weren’t I could walk where I want and with money in my hand.’” “We have no way to help ourselves. We can’t go out and earn anything. We see the men; they can earn and we are dependent on them.” The lack of literacy skills was cited as another factor that limited women in their lives. Overall, the correlation between reported physical and mental-health related ailments in the data cited in Table 3 are not surprising given the high prevalence of somatization in stressful settings. As noted earlier in this chapter, depression, anxiety, and other forms of psychosocial distress are often manifested and expressed in terms of physical ailments in many societies, including the Guatemalan refugee population (Desjarlais et al., 1995).
11
The Women’s Health Questionnaire (WHQ) was adapted from a physical and mental health screening instrument developed by Dr. Pablo Farias and colleagues at the Centro de Investigaciones en Salud de Comitan for their work with Guatemalan refugee women. The instrument has 18 items and assesses symptoms of somatic as well as psychological distress. It was used by Billings (1995) and Miller (1994) in their work with refugee women and children in camps throughout Chiapas in 1992. Given that most Chuj women did not speak Spanish nor did they read or write, either in Spanish or their indigenous language, the WHQ was tape-recorded using the back-translation method described by Brislin (1970). As Miller notes, “The back-translation method is an excellent approach not only to develop an accurate translation of a particular measure, but also to identify terminology and concepts which do not readily translate cross-culturally … .”
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The CDF Training with Camp-based Refugees The CDF work with Guatemalan refugees living in camps in Mexico was marked by limitations in resources, including trained personnel. High levels of illiteracy, poverty, and lack of fluency in Spanish, especially among refugee women, presented challenges to developing programs in mental health. The initial trainers, who were psychologists and other professionals from outside the communities, did not speak any of the indigenous languages, and relied on written materials in their teaching. Given these challenges, the participation of Guatemalan promoters who had been trained through the CDF project in Mexico City was critical. Despite the barriers, many features of the camps facilitated the development of a communitybased, psychosocial model of mental health care: 1) the concentration of the refugee population into delimited and officially recognized camp communities; 2) the existence of community structures and resources into which the mental health work could be integrated; and 3) the particular historic moment during which the camp population was organizing for and negotiating intensively regarding the conditions of their return to Guatemala. As such, strong support for mental health
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work, among other types community development activities, existed on the part of the refugees themselves, as well as Mexican and international organizations and donors.
The Camps as Communities Notwithstanding variation in size, ethnic composition, infrastructure, accessibility, access to resources, religion, and geographic locale, living conditions in the camps throughout Chiapas, Campeche, and Quintana Roo were similar. Overall, refugees had little or no access to electricity or running water. They lived in one or two room houses constructed of wooden planks or dried corn stalks, floors of pounded dirt, and roofs of aluminum sheeting. Most women cooked over woodburning fires whose smoke contributed to a high incidence of upper respiratory problems. Alienation from land ownership made the refugees dependent on aid from the United Nations, the Mexican government, and national and international non-governmental organizations. Refugees also depended on wage labor to pay for staples and in their attempts to improve their living conditions. Opportunities for wage labor included seasonal agricultural work for Mexican landowners and special projects sponsored by the UNHCR. Government restrictions limited these opportunities, however. Furthermore, most jobs were created for men. Women, if they did earn money, usually engaged in artisan projects, sold basic goods from their homes, or performed domestic labor in the homes of Mexican families. One of the most striking features of camp life was the way in which community took on new meanings and dimensions for the refugees. One Mam woman stated: When we left Guatemala we all came from different villages and we had all lived in different ways. That is, our traditions and place of origin were different. As refugees we started to live in communities. We formed many camps. In each of them we were from various places. Among us we are from nine different ethnic groups, including the ladina. We have learned to care for each other as sisters and brothers, between men and women. We respect each other, especially since we left our country for the same reason (Mamá Maquín, 1993).
In exile, definitions of community were expanded from geographic locale and common traditions to what Falla (1992) refers to as a “community of experience.” Over the years, peoples from a variety of linguistic/ethnic backgrounds and a diversity of experiences were forced together in the camps by reason of political circumstance. Groups that in Guatemala had defined themselves according to language and place of residence now interacted and lived side-by-side with individuals and families with whom they had not had previous contact nor had shared a common identity. The conditions under which they were forced from their homes, under which they lived in exile, and the resources with which they had to
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organize new social and political structures compelled those in exile to develop new shared identities such as “indigenous,” “Guatemalan,” and “Guatemalan refugee” (Billings, 1995; 2000). This process was closely linked with the growing Pan-Mayan movement that was taking shape in Guatemala at the time (Warren, 1998). Farias (1994) notes that the psychosocial/mental health problems faced by many refugees results from living in a context that does not validate their history and does not provide them with the space to give meaning to their losses. During the later years of exile, it can be argued that the camp setting in which refugees lived, along with the intensive political organizing that was taking place, did provide such a space for residents and, in part, contributed to a sense of empowerment for those directly involved in activities (Billings, 1995; 2000; Taylor, 1998). The implications of this sense of community for mental health work with refugees is highlighted by Fullilove (1996) as she describes the re-creation of a sense of belonging as one of the key elements of recovery.
Community Structures and Resources By 1992, when the CDF initiated its work in southern Mexico, the camps were highly structured and organized by “sectors.” These included: community representatives, religious catechists, midwives, and health and education promoters.12 Two other refugee organizations were central, also, to camp life: the Permanent Commissions, a 72-member body that engaged in direct negotiations with the Guatemalan government to define the terms of return to Guatemala, and Mamá Maquín, a mass-based Guatemalan refugee women’s organization dedicated to incorporating the needs, concerns, and rights of women in the process of return (Billings, 2000). These sectors and organizations provided critical support as well as the human resources with which to conduct the CDF’s mental health work.
Historic Moment: Preparing to Return to Guatemala At this time, preparations for returning to Guatemala were at their peak. Numerous factors had contributed to this moment, including pressures from the Mexican and Guatemalan governments, the precarious existence of life in the camps, mounting tensions in Chiapas,13 and refugees’ desires to return to their 12
The promoters were often community members with no previous training in health care provision or teaching who were chosen by their communities to serve in those roles. All positions, except that of midwife, were dominated by men, since they required a degree of mobility, as well as Spanishspeaking and literacy skills that most women did not possess. 13 While the public uprising of the Ejercito Zapatista de Liberatión National did not occur until January 1994, tensions throughout Chiapas were evident as early as 1992. This included a rapid militarization of the Chiapas-Guatemala border.
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country, where they could reclaim and rebuild their lives. While some refugees were enthusiastic about the prospect of a collective return to Guatemala, considerable ambivalence was expressed by many children and adults. Ambivalence was particularly evident in the refugees who had been born in Mexico or had arrived in Chiapas at an early age. These youth had grown up hearing of massacres, torture, and violence in their homeland, and had few positive images of the country to which they would be returning. Youth promoters in 15 camps in Chiapas and three camps in Quintana Roo were also trained by a CDF mental health promoter (Sáenz Romero & Sánchez Sosa, 1996). Such efforts, however, were not carried out in camps throughout the three states due to limited resources. During these workshops, the book Mi Libro Patrio (López, Sáenz, Comparini & Mier, 1994), created and published by the CDF, was used extensively. It contains illustrations, ideas for games and activities, and stories that emphasize Mexican and Guatemalan history, geography and culture in an attempt to have young people recognize their bi-cultural identity and to facilitate the process of returning to Guatemala.
CDF Training in Mental Health: An Exploratory Study and Pilot Workshop The model of mental health work utilized in the camps of southern Mexico retained the same basic principles and goals of the CDF work in Mexico City, but the structure and content were necessarily different given that: 1. less time was devoted to training; 2. the CDF did not have a constant presence in the lives of refugees; 3. the CDF worked in collaboration with a series of other organizations that did have a strong presence in the camps; 4. the mental health work came at a time during which the refugee community was preparing to return en masse to Guatemala; 5. the training took place within a context of community, complete with internal structures and resources.
In Mexico City, the CDF had maintained a great deal of autonomy and independence, in large part because of the lack of organizations in the City doing similar work. In southern Mexico, however, numerous non-governmental organizations, including refugee organizations, conducted work in the area of health. The CDF coordinated its efforts with such organizations, including AGRUMS (Agrupación de Promoteres Guatemaltecos de Salud) and PROSECO (Promotión de Servicios Comunitarios), which were instrumental in assembling a group of health promoters from Chiapas, Campeche, and Quintana Roo, organizing the workshops, and supporting the promoters in the replication of the
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workshops. Some members of PRODUSSEP (Promotión de Servicios de Salud y Educatión Popular) collaborated as trainers in three workshops.14 Prior to the training of community members who would become mental health promoters, an exploratory study was conducted to determine the status of health in the camps and the particular mental health needs of the refugee population, as well as to better understand the health challenges faced by the communities in the camps. This phase lasted six months (January—June 1992) and included interviews with key personnel in health institutions and groups that worked on the issue of health (such as physicians in the Comitán Hospital), women in the refugee organization Mamá Maquín, technical and medical personnel in the Centro de Capacitación en Ecología y Salud para Campesinos (CCESC), and representatives of the Guatemalan refugee health promoter group, AGRUMS. The interviews were guided by the question, “What health and/or mental health needs do you observe in your daily work in the refugee community?” The most common responses included: 1. Problems related to depression, alcoholism and violence against women, as well as between men; 2. The possibility of returning to Guatemala had created tensions and violence in some communities and some families. There were divisions among groups that represented different political positions; 3. The health promoters tended to overmedicate their patients and lacked the training to differentiate between physical problems and emotional or mental health problems; 4. Women did not trust the male health promoters; when they did seek help they preferred to consult a midwife or other women in the community who, in general, had little formal training.
Two questionnaires regarding the return to Guatemala were given to refugees, including 39 health promoters (31 men and 8 women), in Chiapas, Campeche, and Quintana Roo. Many expressed a desire to return to Guatemala, stating, “That is where I was born and I am Guatemalan. That is where I have my lands, my animals, and my family. I would like to return to see if we can recoup what we left behind.” Others wished to return because they were afraid that war was about to break out in Chiapas, just as it had in Guatemala. Reluctance about returning to Guatemala was also expressed. People feared that they would, once again, experience the violence from which they had fled: the recurrence of forced military recruitment, disappearances, and the violation of human rights. They 14
The Swedish organization, Rädda Barnen, provided most of the funding for the work that took place in southern Mexico.
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feared, too, the memories of the violence. One health promoter articulated this fear: I’m afraid to return and to remind myself of all that they did to us. They killed my children and if we hadn’t come [to Mexico], we would have been dead. But yes, we do think about returning when the government accepts our conditions (Sáenz, 1994, p. 85).
After the exploratory phase, CDF conducted a pilot workshop with a group of health promoters in Chiapas. These promoters were themselves refugees and members of the same communities as those they sought to support. Recognizing that they were an important part of the social and organizational fabric of the camp communities, CDF determined that they would be the ideal vehicle for training and giving treatment on mental health issues. The workshop was conducted in Comalapa, Chiapas and lasted three days (8 hours per day). A total of 17 health promoters (11 men and 6 women) attended. Three main objectives were outlined for the workshop: 1) obtain information from the health promoters about the general health and mental health of the camp population as well as information about the return; 2) test a methodology that was in accordance with the training and reality in which the promoters lived; and 3) share with the promoters approaches that would help them to identify and attend to mental health problems. The importance of active listening and allowing people to speak were emphasized as key modes of support. Findings from the workshop illustrated that health promoters did not have a methodological or conceptual framework that guided their work, and most tended to give advice and make judgments before actively listening to those seeking their help. The most common forms of treatment used by health promoters were prescription medicines and traditional practices including baths, herbs, and visits to the curandero in the community. Thus, traditional and western medical practices existed side by side and both were drawn upon for solutions. Psychosomatic suffering in the population was frequent and was manifested most commonly in generalized physical pain that persisted even after medical and traditional treatments. This was most often associated with the experience of a traumatic event. The pain of fleeing from Guatemala and the memory of the experience were still alive for the refugees, as were feelings of uncertainty and internal conflict regarding plans to return to Guatemala. Health promoters noted that the planned return was causing divisions in communities and within families. These findings were useful for developing the model of mental health work to be implemented in the camps. The exploratory phase and the pilot workshop enabled the CDF team to further develop its model of mental health training for the promoters. In brief, training was to be carried out through a series of workshops that addressed the
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preventative and treatment issues related to mental health in the refugee community. The following objectives were defined: 1. Train a group of 60 promoters in the camps of Chiapas, Campeche, and Quintana Roo in mental health problem treatment and prevention. This included concepts and methodological tools that could help the promoters to diagnose and treat mental health problems as well as engage community members in preventative activities; 2. Support the replication of such workshops through the originally trained group. The participants themselves became trainers to other promoters and active sectors in their communities; 3. Through the first two objectives, raise the refugee community’s awareness of mental health-related problems that affect the well-being of the community members.
Training of Mental Health Promoters in Camps Six formal workshops in three settings in Chiapas, Campeche, and Quintana Roo were held from July 1992 to June 1993. Each session lasted four days. A group of 56 representatives from different sectors of the refugee community received training. Participants had the support of their community since they were elected or “named” to attend the workshop by refugees’ own organizations. Each trainee was required to have a certain command of spoken Spanish and to be able to read and write at a basic level since the workshops were taught in Spanish and various written materials were used. This requirement excluded many women from participating. Participants committed themselves to integrating the lessons learned from the sessions into their daily work (as, for example, health and education promoters or midwives, among others), and to teach others what they had learned. Participants also made the commitment to attend the full training, which consisted of three workshops, so that trust could be developed in the group and continuity in the learning process could be maintained. The participation of different sectors and types of promoters enriched the sessions as a range of visions, problems, and experiences with violence were shared during the workshops. This approach was used in an attempt to create teams that could work together in communities. Perhaps the most challenging aspect of the training was not its structure, but its content. Given a context in which multiple languages were spoken, the lack of a shared mental health terminology, and the absence of western-based notions of psychology, it was difficult to offer an easy to understand or common conceptualization of mental health to the trainees. A second challenge was the incorporation of local understandings and concepts into the training and practice of the mental health promoters. One approach was not to put undue emphasis on the
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terms themselves (e.g., depression) but instead to develop skills for linking symptoms, possible causes, and outcomes so that the promoter was able to identify the reasons for certain behaviors. Once those skills were mastered, promoters could attend to the underlying causes of distress—for example the fear of returning to Guatemala—and take appropriate action. As mentioned previously, for example, many women expressed the pain related to the loss of a family member or of their home in the form of headaches. An understanding of this was important, given the tendency for health promoters to want to medicate patients rather than attend to the underlying causes of the woman’s pain and grief (Sáenz, 1994).15 The workshop reviewed five major areas: 1. Mental health: An introduction to the concepts that enabled promoters to identify signs and symptoms of the most common mental health problems, including depression, post-traumatic stress disorders, alcoholism, the emotional consequences of domestic violence and psychosomatic problems. This component also focused on how the promoter could offer support, including referral to other health services. Trainers drew upon promoters’ own experience with and knowledge about mental health problems and integrated that information into the content of the workshop. 2. Role of the mental health promoter: Trained the participants to use talking and listening as principal tools in their work. Interviewing techniques, development of empathy, identification of problems, valuing useful traditional forms of therapy, and teamwork were themes that were emphasized as important to the success of the promoter. In addition, promoters were encouraged to link community members experiencing problems to other resources, when appropriate, including health centers, traditional healers (curanderos), non-governmental organizations, or other professionals. 3. Return to Guatemala: This topic was a central concern for all refugees during the period in which the workshops were conducted. Participants focused on ways to work with communities and families as they expressed their worries, fears, uncertainties, and expectations about returning to Guatemala. They also discussed how to create safe spaces for people who needed to work through their unresolved anxieties and pain. 4. Replication of workshops: These exercises enabled promoters to put their new skills into practice and to train other community members. To this end, CDF created a series of detailed activity guides that aided promoters in their efforts to replicate workshops in the camps. CDF also published an adapted translation of a counseling manual, first published by the Appropriate Social Services in South Africa (OASSSA), called the Manual 15
Medicating patients serves as a status symbol for the health promoter who shows that he/she can use modern medicines. Patients themselves often request injections of medications or vitamins, believing that the most effective means of administering “a cure” is through an injection.
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from South Africa. They also created and published the workbooks, From Child to Child: Our Roots, Our Exile (López & Sáenz, 1991) and From Exile to Return: What We Live and What We Feel (López, 1991). A flyer entitled, “The Role of the Promoter,” produced by PRODUSSEP, was also used during the initial workshops and in those replicated by the promoters. 5. Techniques: Various teaching techniques were used in the workshops in an effort to make them as dynamic and interactive as possible. Case discussions were used to help promoters in the recognition of mental health problems and to specify appropriate treatments. Skits about mental health problems were presented. The promoters listened, observed, and interacted afterwards to analyze the content and message. This proved to be an effective technique in a population that valued theater and oral tradition. It was an especially useful technique for populations whose reading skills were limited and for whom lecture formats were unfamiliar. Drawing was a third technique used in the workshop. It complemented written material, and served as an alternative to speaking or as an introduction to a concept before discussion took place. By using all of these techniques, the workshops served multiple purposes. They provided a forum in which indigenous concepts and forms of expression related to health in general were explored and linked to Western concepts of mental health. The workshops served as a structured time and place in which concepts and techniques could be discussed and practiced. Lastly, they provided a space in which experiences and ideas were shared, enabling members of the group to confront the challenges they had experienced in the process of exile before moving on to assist and support others in their communities.
Impact of the Workshops A total of 56 community leaders in Chiapas, Campeche, and Quintana Roo participated in at least one mental health workshop coordinated by the CDF; 25 promoters completed the series of three workshops. Those trained during the workshops also trained other promoters and groups within their communities. An estimated 261 additional persons were reached in Chiapas and 380 in Quintana Roo and Campeche through workshops and meetings that incorporated the methods and materials used during the initial trainings. The greatest number of women were reached during the replication phase, when promoters conducted workshops in the camps and in the language(s) that people understood. Given the characteristics of many women’s lives, including limited literacy and Spanish abilities and restricted mobility outside of the camps, this approach enabled women to participate in the workshops. For example, more than 100 women from Campeche and Quintana Roo—who were preparing to
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return to Guatemala—took part in a workshop that was conducted in three languages simultaneously. The mental health promoters reported many positive aspects of their new skills. Some reported that their work with families had improved, particularly since they were now able to listen and demonstrate empathy more effectively. They were proud that community members were now regularly confiding in and looking to them when in need of support. The training had also taught them to ask more useful and respectful questions that enabled them to better understand people’s problems. Most were highly motivated to continue their training in mental health so that they could better attend to the needs of fellow refugees. Many challenges also emerged. The variety of languages spoken in the camps made effective communication difficult. The dispersion of camps, particularly in Chiapas, presented obstacles to gathering people together for meetings. Insufficient economic support made replication of workshops difficult. In terms of treatment, some promoters continued to give “medications” (such as injections of Vitamin E) without identifying the underlying causes of an individual’s distress. This practice indicated that the process of changing beliefs and actions related to healing is slow and requires follow-up of the new practitioners. Even when mental health promoters themselves attempted to move away from administering medications, community members expressed their doubt that “talking alone” could relieve their distress and requested that something more be given to them. In addition, community members had high expectations that mental health promoters could now “cure” their distress and turned to the new promoters with the hope of immediate relief. The work conducted with community leaders in mental health, and their subsequent work with community members, was the first step in a process of incorporating mental health awareness into the daily activities of those in roles of responsibility. The model implemented in the camps was one that utilized existing community structures and resources, used concepts and approaches that were created out of and adapted to sociocultural characteristics, emphasized the importance of participants’ processing of their own traumatic experiences within the group, and encouraged promoters to translate and adapt lessons learned to their particular cultural and organizational forms. Within limits, this model was successful in disseminating information about mental health to refugees throughout the camps and in expanding the availability of mental heath services to those living in exile and preparing for their return to Guatemala.
CONCLUSIONS [M]ental health is found not so much in the abstract functioning of the individual organism as in the character of social relations where the life of each person is founded, constructed, and developed. For this reason, we
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must work hard to find theoretical models and methods of intervention that allow us, as a community and as individuals, to break with the culture of our vitiated social relations and put other, more humanizing, relationships in their place. MARTÍN-BARÓ, 1994, p. 120 Two models for mental health work with refugee women were presented in this chapter. Both share a commitment to training community members in mental health concepts, incorporating participants’ perspectives and experiences into those conceptualizations, and ultimately having the promoters attend to the basic mental health needs of residents in their communities. The development of community-based promoters was critical given the lack of mental health resources, including professionals, available to the refugee population. The promoters were able to “speak the language” of community members; they were fluent in the languages that were spoken by the Guatemalan refugees; they could understand the ways in which symptoms of distress were described and relate to the expectations that community members have in regard to diagnosis and treatment. As such, they were able to bridge local and Western terms and understandings of mental health and use their knowledge to serve the mental health needs of their fellow refugees. Lastly, both models emphasized the importance of passing on knowledge and experience so that those who were trained could then train other community members. In this way, services become more readily available to the population. While formal evaluation of the short and long-term impact of the programs was not conducted by organizers or others, many insights have been gained through the implementation of these creative models. In the last section, some of the most important challenges that remain for others who want to undertake mental health work with refugee women are outlined.
Challenges Numerous challenges must be overcome before mental health will be recognized as a priority in working with refugee populations and, in particular, with refugee women. Donors, as well as national and international organizations and institutions, must have a greater awareness of the impact of mental health on the general health of the population and of the creative ways in which programs have been able to address the lack of mental health care professionals available to work in refugee settings. Below we list some of the most important challenges to improving and expanding services to refugees: Incorporating systematic evaluation into community-based programs so that the impact of training community members in mental health work can be better understood and replicated.
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Conducting research that is interdisciplinary and incorporates ethnographic, clinical and epidemiological components in order to develop and assess programs that are appropriate for the people they are meant to serve. Such research should be participatory, incorporating community members in the design, implementation, and analysis phases. Indicators that move beyond the individual to include his or her role in the community should be developed and used as measures of success. Creating programs that are culturally appropriate and include gender as an important dimension in activities. This means that established Western concepts of mental health need to be bridged with local understandings and articulations of health and illness. Relevant questions include: What are the linkages between physical and mental health? What terms and meanings are attached to different experiences? How do women experience “healing” and what steps are necessary for that process to take place? Producing illustrated didactic materials that are culturally appropriate and that incorporate gender as an important dimension of social experience is important. Promoters should be involved in the creation of materials that will enable them to direct workshops more effectively. Through the work in the camps it was noted that texts and guides also gave a sense of security to the promoters as they conducted training workshops for other mental health promoters. Incorporating mental health concepts and messages into radio programs, newsletters, and other media aimed at the refugee population. Training and sensitizing medical personnel and staff of organizations and institutions that work with refugee populations in recognizing mental health problems and in incorporating both preventative and curative services into their programs when possible. Addressing the everyday challenges of women’s lives so that they can participate in training and any other activities that take place in the community to address mental health issues. Challenges include: language barriers, low levels of formal education/illiteracy, isolation, low level of self-esteem or sense of self-worth, few women in leadership positions, women occupied with essential work to maintain their families throughout the day. These challenges are particularly daunting when a training program lasts for a brief period of time, leaving little opportunity to create alternative structures that can facilitate women’s participation. Incorporating mental health work with refugee women into other programs aimed at improving the overall status and well-being of women. When this is done, mental health, particularly preventive activities, will become an integral component of programs not defined necessarily as “mental health.” This helps to get beyond the compartmentalized view of health care and women’s empowerment. Related to this point is the importance of
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recognizing the variety of ways in which mental health can be addressed and improved for women. As Good (1999) rightly points out, “Programs that are attuned to women’s voices, needs, and hopes for the future for themselves and their families, and that contribute to women’s control over economic and social/political resources have a direct and beneficial effect on women’s mental health.” These, in conceit with well-developed preventive mental health programs, could provide women with a number of important tools with which to become more confident individuals and partners within their families. Ultimately, work related to mental health in refugee settings must be viewed as a vital activity in a larger project of social change, one that involves both men and women. Reformulating social relations—including gender relations—in ways that are respectful and humanizing for all members of society can have a strong impact on women’s health. Implementing interventions such as those described in this chapter in refugee settings where individuals, families, and communities have experienced large-scale violence can be one important step toward the goal of repairing social relations and improving health. ACKNOWLEDGMENTS: To the Guatemalan refugee and returnee communities that
continue to inspire and remind us that the work is far from over; Barbara Harrington, Laurana Morena, Gilda Larios, Marie Moore, Carol Johnston, Angeles Lopez and the Mental Health Promoters of the CDF; Dr. Kenneth Miller for his careful review of earlier versions of the chapter and his insightful comments.
REFERENCES Alarcón, R. D. (1986). La salud mental en América Latina: 1970–1985. Boletín de la Oficina Sanitaria Panamericana, 101, 567–562. Alcoff, L. & Gray, L. (1993). Survivor discourse: Transgression or recuperation? Signs: Journal of Women in Culture and Society, 18, 260–290. Alcon, I. (1993). Proyecto de salud mental para promotores infantiles. Nite-Lob Organo Informativo de la Red Regional de Salud Mental México y Centroamérica (San Salvador, El Salvador), 2 (julio-decembre), 29–32. Aron, A. (1992). Testimonio, a bridge between psychotherapy and sociotherapy. In E. Cole, O. M. Espin, & E. D. Rothblum (Eds.), Refugee women and their mental health: shattered societies, shattered lives (pp. 173–189). New York: Haworth Press. Ashford, M. W., & Huet-Vaugh, Y. (1997). The impact of war on women. In B. S. Levy & V. W. Sidel (Eds.), War and public health (pp. 186–196). New York: Oxford University Press. AVANCSO (Asociación Para el Avance de las Ciencias Sociales en Guatemala). (1992).¿Dónde está el futuro? Procesos de reintegración en comunidades de retornados. Cuadernos de Investigación, No. 8. Guatemala City: Inforpress Centroamericana.
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Ball, P., Kobrak, P., & Spirer, H. F. (1999). State violence in Guatemala, 1960–1996: A quantitative reflection. Washington, DC: American Association for the Advancement of Science. Becker, D., Castillo, M. I., Gómez, E., & Salamovich, S. (1990). Muerte y duelo: Los familiares de ejecutados y su psicoterapia. In I. Martín-Baró (Ed.), Psicología social de la guerra (pp. 411–453). San Salvador, El Salvador: Universidad CentroAmericana (UCA) José Simeón Cañas Editores. Billings, D. L. (1995). Identities, consciousness and organizing in exile: Guatemalan refugee women in the camps of southern Mexico. Unpublished doctoral dissertation, Univesity of Michigan. Billings, D. L. (2000). Organizing in exile: The reconstruction of community in the Guatemalan refugee camps of southern Mexico. In M. Moors & J. Loucky (Eds.), The Maya diaspora (pp. 74–92). Philadelphia, PA: Temple University Press. Bode, B. (1989). No bells to toll: Destruction and creation in the Andes. New York: Paragon House. Bottinelli, M. C., Maldonado, I., Troya, E., Herrera, P., & Rodríguez, C. (1990). Psychological impacts of exile: Salvadoran and Guatemalan families in Mexico. Washington, DC: Center for Immigration Policy and Refugee Assistance, Georgetown University. Brislin, R. (1970). Back-translation for cross-cultural research. Journal of Cross-Cultural Psychology, 1, 185–216. CDF (Comité del Distrito Federal de Ayuda a Refugiados Guatemaltecos) (1994). Los refugiados y la salud mental: Promotoras de salud mental. In P. J. Farías Campero & R. Miranda Redondo (Eds.), Experiencias del refugio Centro Americano: perspectivas de salud mental en refugiados, desplazados y migrantes (pp. 3–6). Chiapas, México: Colegio de la Frontera Sur, Centro de Investigaciones en Salud de Comitán, Federación Mundial de Salud Mental. CEH (Comisión de Esclaracimiento Histórico) (1999). Guatemala memory of silence (tz’inil na ‘tab’al): Report of the Commission for Historical Clarification, conclusions and recommendations. Guatemala City, Guatemala: Comisión de Esclaracimiento Histórico. Chapman, A. R. & Rubenstein, L. S. (1998). Human rights and health: The legacy of apartheid. Washington, DC: American Association for the Advancement of Science and Physicians for Human Rights. Chemtob, C., Tomas, S., Law, W., & Cremniter, D. (1997). Postdisaster psychosocial intervention: A field study of the impact of debriefing on psychological distress. American Journal of Psychiatry, 154, 415–417. CRLP (Center for Reproductive Law and Policy) (1996). Reproductive freedom and human rights: Rape and forced pregnancy in war and conflict situations. New York: CRLP. Desjarlais, R., Eisenberg, L., Good, B., & Kleinman, A. (1995). World mental health: Problems and priorities in low-income countries. New York: Oxford University Press. Deutsch, M., Hoffnung, M., Speyer, D., & Viñar, M. (1991). El silencio y el secreto en el régimen de terror. In E. Neumann (Ed.), III Conferencia internacional: Salud, represión política y derechos humanos, proceedings (pp. 65–69). Santiago de Chile, Chile: Actas Proceedings. Falla, R. (1992). Massacres de la selva: Ixcán, Guatemala (1975–1982). Guatemala City, Guatemala: Editorial Universitaria. Farías, P. (1991). Emotional distress and its socio-political correlates in Salvadoran refugees. Culture, Medicine & Psychiatry, 15, 167–192. Farías, P. (1994). Refugio y salud mental en America Latina. In P. J. Farías Campero & R. Miranda Redondo (Eds.), Experiencias del refugio Centro Americano: Perspectivas de salud mental en refugiados, desplazados y migrantes (pp. 15–28). Chiapas, México: Colegio de la Frontera Sur, Centro de Investigaciones en Salud de Comitán, Federación Mundial de Salud Mental. Farías, P. (1997, 2–6 June). Salud mental, marginación y población indígena en América Latina. Presented at the Ponencia en el IV Congreso Latinoamericano de Ciencias Sociales y Medicina. Cocoyoc, Morelos, México. Forbes Martin, S. (1995). Refugee women. London: Zed Books.
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Friedman, A. R. (1992). Rape and domestic violence: The experience of refugee women. In E. Cole, O. M. Espin, & E. D. Rothblum (Eds.), Refugee women and their mental health: shattered societies, shattered lives (pp. 65–78). New York: Haworth Press. Fullilove, M. T. (1996). Psychiatric implications of displacement: Contributions from the psychology of place. American Journal of Psychiatry, 153, 1516–1523. Geertz, C. (1973). The interpretation of cultures: A collection of essays. New York: Basic Books. GHRSP (Guatemala Health Rights Support Project) (1992). Unfinished stories: Guatemalan refugees in Mexico. Boston: GHRSP. Good, M. J. D. (1999). Women and mental health. Available: http://www.un.org/womenwatch/daw/ csw/mental.htm (Accessed 20 July 1999). Harrington, B. (1994). Chronicle of a relationship created over time: Up-rising, a story of origins. México City, México: Comité del DF de Ayuda a Refugiados Guatemaltecos. Hein, J. (1993). Refugees, immigrants, and the state. Annual Review of Sociology, 19, 43–59. Herman, J. (1992). Trauma and recovery. New York: Basic Books. Holtzman, W. & Bornemann, T. (Eds.) (1990). Mental health of immigrants and refugees, conference proceedings. Austin, TX: Hogg Foundation for Mental Health, University of Texas. Human Rights Watch, A. (1996). Shattered lives: Sexual violence during the Rwandan genocide and its aftermath. New York: Human Rights Watch. Imaz, B. (1997, 9–11 June). Posibilidades de atención a la población en los servicios de tercer nivel en la Republica Mexicana. Taller regional sobre salud mental y pobreza, Chiapas, Mexico. Presented at the World Mental Health Conference. Chiapas, Mexico. Jay, A. (1993). Persecution by proxy: The civil patrols in Guatemala. New York: The Robert F Kennedy Memorial Center for Human Rights. Jenkins, J. (1991). The state, the body and political violence: The embodiment of fear and anxiety among Salvadoran women refugees. Culture, Medicine & Psychiatry, 15, 139–165. Johnston, C. (1994). Mujeres en exilio: Nuestra lucha por la vida. México City, México: Comité del DF de Ayuda a Refugiados Guatemaltecos. King, E. M. & Hill, M. A. (1993). Women’s education in developing countries: Barriers, benefits, and policies. Baltimore: Johns Hopkins University Press. Kinzie, D., Sack, W., Angell, R., Rath, B., & Manson, S. (1986). The psychiatric effects of massive trauma on Cambodian children. Journal of the American Academy of Children, 25, 370–383. Kleinman, A. & Good, B. (Eds.) (1985). Culture and depression: Studies in the anthropology and cross-cultural psychiatry of affects and disorder. Berkeley: University of California Press. Kobrak, P. (1997). Village troubles: The civil patrols in Aguacatán, Guatemala. Unpublished doctoral dissertation, University of Michigan. Kordon, D. & Edelman, L. (1988). Psychological effects of political repression. In D. Kordon, L. Edelman, D. M. Lagos, E. Nicolleti, & R. C. Bozzolo (Eds.), Psychological effects of political repression (pp. 33–47). Buenos Aires, Argentina: Sudamericana/Planeta. Kroll, J., Habenicht, M., & MacKenzie, T. (1989). Depression and post-traumatic stress disorder in southeast Asia refugees. American Journal of Psychiatry, 146, 1592–1597. Levav, I. (1993). Reestructuración a la atención psiquiátrica en América Latina. Acta Psiquiátrica y Psicológica en América Latina, 39, 285–293. LeVine, R. A., LeVine, S. E., Richman, A., Uribe, F. M. T., Correa, C. S., & Miller, P. M. (1991). Women’s schooling and child care in the demographic transition: A Mexican case study. Population and Development Review, 17, 459–496. Lifton, R. J. (1967). Death in life: Survivors of Hiroshima. New York: Simon and Schuster. López, A. (1991). Del refugio al retorno: Lo que vivimos, lo que sentimos (From exile to return: What we live and what we feel). México City, México: Comité del DF de Ayuda a Refugiados Guatemaltecos.
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López, A. & Sáenz, I. (1991). De niño a niño: Nuestro orígen, nuestro exilio (From child to child: Our roots, our exile). México City, Mexico: Comité del DF de Ayuda a Refugiados Guatemaltecos. López, A., Sáenz, I., Comparini, M., & Mier, C. (1994). Mi libro patrio (My homeland book). México City, México: Comité del DF de Ayuda a Refugiados Guatemaltecos. Lykes, B., Maciel, R., Iborra, M., Suardi, L., & Costa, E. (1991). Jugando a recrear nuestra historia: Talleres creativos integrales para niños: una experiencia en Argentina y Guatemala. In E. García Mendez & M. del Carmen Bianchi (Eds.), Ser niño en América Latina (pp. 369–373). Buenos Aires: Editorial Galerna. Lykes, M. B. (1994). Terror, silencing and children: international, multidisciplinary collaboration with Guatemalan Maya communities. Social Science & Medicine, 38, 543–552. MacKinnon, C. A. (1993, July–August). Turning rape into pornography: Postmodern genocide. Ms Magazine, 24–30. Mamá Maquín. (1993, 9–11 May). Refugee women: Participation and organization. Presented at the Gender Issues and Refugees: Development Implications. York University, Toronto, Canada. Mamá Maquín. (1994). De Refugiadas a retornadas: Memorial de experiencias organizativas de las mujeres refugiadas en Chiapas. Chiapas, México: Mamá Maquín-CIAM. Manz, B. (1988). Refugees of a hidden war: The aftermath of counterinsurgency in Guatemala. New York: State University of New York Press. Martín-Baró, I. (1988). From dirty war to psychological war: The case of El Salvador. In A. Aron (Ed.), Flight, exile and return: mental health and the refugee (pp. 2–22). San Francisco: Committee for Health Rights in Central America. Martín-Baró, I. (1990). Psicología social de la guerra. San Salvador, El Salvador: Universidad CentroAmericana (UCA) Editores. Martín-Baró, I. (1994). Writings for a liberation psychology (A. Aron & S. Corne, Eds.). Cambridge, MA: Harvard University Press. Martinez, A. (1993). The ecology of human development. In S. Turitz (Ed.), Confronting the Heart of Darkness, An International Symposium on Torture in Guatemala (pp. 22–26). Washington, DC: Guatemala Human Rights Commission/USA. McCallin, M. (1991). The impact of current and traumatic stressors on the psychological well-being of refugee communities. In M. McCallin (Ed.), The psychological well-being of refugee children: research, practice, and policy issues (pp. 68–89). Geneva: International Catholic Child Bureau. Métraux, J. C. & Aviles, A. (1991). Training techniques of non-professionals: a Nicaraguan preventive and primary care programme in mental health. In M. McCallin (Ed.), The psychological well-being of refugee children: research, practice, and policy issues (pp. 226–243). Geneva: International Catholic Child Bureau. Miller, K. E. (1994). Growing up in exile: mental health and meaning making among indigenous Guatemalan refugee children in Chiapas, Mexico. Unpublished doctoral dissertation, University of Michigan. Miller, K. E. & Billings, D. L. (1994). Playing to grow: A primary mental health intervention with Guatemalan refugee children. American Journal of Orthopsychiatry, 64, 346–356. Mollica, R., Wyshak, G., Lavelle, J., & Truong, T. (1990). Assessing symptom change in South Asian refugee survivors of mass violence and torture. American Journal of Psychiatry, 147, 83–88. Myerhoff, B. (1978). Number our days: A triumph of continuity and culture among Jewish old people in an urban ghetto. New York: Simon and Schuster. Nduna, S. & Rude, D. (1998). A safe space created by and for women: Sexual and gender-based violence program, phase II report. Arusha, Tanzania: International Rescue Committee. O’Dogherty, L. (1989). Central Americans in Mexico City: Upooted and silenced. Washington, DC: Center for Immigration Policy and Refugee Assistance, Georgetown University.
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Partnoy, A. (1986). The little school: Tales of disappearance and survival in Argentina. Pittsburgh, PA: Cleis Press. Pop, A. (1997, 9–11 June). La salud mental y las relaciones interétnicas en Guatemala. Paper presented at the World Mental Health Conference. Chiapas, Mexico. REHMI (Proyecto Interdiocesano de Recuperatión de la Memoria Histórica) (1998). Guatemala: Nunca mas: Vol. 2 1, impactos de la violencia. Guatemala City, Guatemala: Oficina de Derechos Humanos del Arzobispado. Rosenberg, J. (1991, 18–23 August). Grupos de apoyo para la igualdad con refugiados de America Central en la Bahía de San Francisco. Paper presented at presented at the Congreso de Refugiados y Desplazados, Congreso México. Mexico City, Mexico: World Federation of Mental Health. Salvadó, L. (1988). The other refugees: A study of nonrecognized Guatemalan refugees in Chiapas, Mexico. Washington, DC: Center for Immigration Policy and Refugee Assistance, Georgetown University. Sáenz Romero, I. & Sánchez Sosa, J. J. (1996). Development and identity of Guatemalan refugee children in Mexico: Conditions and options for support interventions. Refuge: Canada’s Periodical on Refugees, 15(5), 34–41. Sáenz, I. (1991). Formación de promotoras Guatemaltecas de salud mental: Refugiadas en México. In E. Neumann (Ed.), III conferencia internacional: Salud, represión política y derechos humanos, proceedings (pp. 159–162). Santiago de Chile: Actas Proceedings. Sáenz, I. (1994). Un modelo para el apoyo de la salud mental de los refugiados Guatemaltecos en el Sureste de México, a través de la capacitación de los promotores de la comunidad. Masters Thesis in Clincal Psychology, Universidad Nacional Autónoma de México, México DF. Sáenz, I. (1994). La atención y preventión de la salud mental de los refugiados Guatemaltecos en México: Capacitación de los promotores de la comunidad. In P. J. Farías Campero & R. Miranda Redondo (Eds.), Experiencias del refugio Centro Americano: Perspectivas de salud mental en refugiados, desplazados y migrantes (pp. 123–133). Chiapas, Mexico: Colegio de la Frontera Sur, Centro de Investigaciones en Salud de Comitán, Federación Mundial de Salud Mental. Shackman, J. & Reynolds, J. (1997). Training indigenous workers in mental-health care. In D. Eade (Ed.), Development for health: Selected articles from development in practice (pp. 128–134). London: Oxfam. Simon, J. M. (1987). Guatemala: Eternal spring, eternal tyranny. New York: WW Norton. Somasundaram, D. J., Van de Put, W. A. C. M., Eisenbruch, M., & de Jong, J. T. U. M. (1999). Starting mental health services in Cambodia. Social Science & Medicine, 48, 1029–1046. Summerfield, D. (1991). Psychosocial effects of conflict in the Third World. Development in Practice, 1(3), 159–173. Swiss, S. & Giller, J. E. (1993). Rape as a crime of war: A medical perspective. JAMA, 270, 612–615. Taylor, C. (1998). Return of Guatemala’s refugees: Reweaving the torn. Philadephia: Temple University Press. Tidwell, M. (1993). Education for a change: Appropriation and control efforts in the Mayan refugee schools. Unpublished doctoral dissertation, University of Pittsburgh. U.S. Committee for Refugees (1993). El retorno: Guatemalans’ risky repatriation begins. Washington, DC: American Council for Nationalities Service. UNHCR (1991). A selected bibliography on refugee health. Geneva: UNHCR-CDR. UNHCR (1994). Informe sobre la situación de los refugiados en el mundo. Madrid: Icaria. UNHCR (2000). Refugees by numbers: 2000 edition. Available: http://www.unhcr.ch (Accessed 23 March 2001). United Nations (1996). Platform for action and the Beijing declaration: Fourth world conference on women, Beijing, China, 4–15 September 1995. New York: United Nations Department of Public Information.
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Victora, C. G., Huttly, S. R. A., Barros, F. C., Lombardi, C., & Vaughan, J. P. (1992). Maternal education in relation to early and late child health outcomes: Findings from a Brazilian cohort study. Social Science and Medicine, 34, 899–905. Warren, K. (1998). Indigenous movements and their critics: Pan-Maya activism in Guatemala. Princeton, NJ: Princeton University Press. Weinstein, E. (1987). Problematica psicológica del retorno del exilio en Chile: Algunas orientaciones psicoterapeúticas. Boletín de Psicología, 23, 21–38. Westermeyer, J. (1989). Paranoid symptoms and disorders among 100 Hmong refugees: A longitudinal study. Acta Psychiatrica Scandinavica, 80, 47–59. Zolberg, A. R., Suhrke., A., & Aguayo, S. (1989). Escape from violence: Social conflict and refugees in the Third World. New York: Oxford University Press.
Chapter
4
Mental Health Services in Primary Care The Case of Nepal SARAH ACLAND
In this chapter I will describe a community mental health delivery system that has been in operation under the auspices of the United Mission to Nepal (a multinational Christian agency), the Department of Psychiatry at the Institute of Medicine of Tribhuvan University, and the Ministry of Health of Nepal since 1984.1 It depends upon, and is integrated into, a decentralized public health system featuring local administration of district health posts. The model is based on, but not identical with, the community mental health program developed at the National Institute of Mental Health and Neurosciences (NIMHANS) in Bangalore, India. While the two models offer mental health treatment and services in primary care settings, the personnel who deliver and supervise those services are quite different. In the NIMHANS mental health program diagnoses are determined and treatment is delivered by doctors, whereas in Nepal these tasks are performed by primary care workers.2 This reflects how primary care is delivered in the respective countries. In India, primary care is done by doctors, and, in Nepal, where there is a critical shortage of doctors, health workers are the ones who provide treatment at the health posts. Similarly, supervision in India is carried out by doctors, while in Nepal it is done, again, by primary health workers at the local level. This is not 1
WHO first provided funds for mental health work in Nepal in 1980 (Wright, 1992). Pakistan has also developed a mental health program in primary care using the NIMHANS model, but because of its greater number of doctors and training facilities has been able to have doctors deliver the care.
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the ideal solution for Nepal and presents many difficulties. However, in practice, it is the only realistic option for care.
SETTING THE CONTEXT3 Nepal is a small, landlocked country4 that lies along the southern line of the Himalayan mountains. It is hemmed in by India to the south and by China’s Tibet Autonomous Region to the north. “A yam between two boulders” is how the Nepali people describe it. Although the Terai, the strip of land that borders India, is low-lying, flat, and tropical, most of the country rises in range after range of hills that culminate in the great snow-covered peaks of the Himalayas, eight of which are over 8,000 meters. In 1999, the population of the country was 24.3 million people. The high annual population growth rate (2.7% per annum between 1991–1997) means that more than half of all Nepalese are now 19 years and under. Given that it is one of the poorest countries in the world—with a GNP per capita of US$210—it is not surprising that by most measures the health and welfare of the Nepalese are far less than optimal. Illiteracy rates among persons 15 years and above are very high: 27% overall; 59% for men and 86% for women. Fully 90% of the population live in rural areas, and of these, less than half have access to safe water, and less than 6% have access to sanitation. Only 15% of the population has access to electricity. In 1980, life expectancy at birth was 48 years and although it has improved by almost 25% since then (to 57 years as of 1996), it remains one of the lowest in the world. The low life expectancy is, at least in part, accounted for by high rates of infant mortality (85 per 1,000 live births), under-5 mortality (116 per 1,000 live births), malnutrition (49% of children under 5 are underweight), and maternal mortality (1,500 per 100,000 live births). Women have lower life expectancies than men in part because of maternal mortality, but also because of the poor status of women in general (see below). Nepal’s population may not seem large in comparison to its neighbors, but its mountainous terrain means that its ratio of population to arable land (approximately 600 persons per square kilometer) is one of the highest in the world. Only 17% of the country’s land will support cultivation; of that only one-quarter is irrigated. The result is that a great number of tiny terraces rise perilously up the steep hillsides, leading to erosion, soil impoverishment, and frequent landslides. Rapid urbanization in the Kathmandu Valley has brought with it problems of pollution, and the population explosion in the rural areas has lead to severe deforestation. 3
Unless otherwise indicated, economic and demographic data are taken from the World Bank (1998a,b) or the International Data Base (U.S. Census Bureau, 1999). 4 It is 885km south-east to north-west and 193km north to south with a total area of about (or a little larger than Greece).
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The terrain and the nations’s poverty mean that motorable roads are few and most communications take place on foot. The road from China is unpaved and leads through wild and deserted country and is frequently impassable; entry points from India are limited and ultimately only one very steep and winding road permits passage to Kathmandu, the capital city. The one international airport may be among the most dangerous in the world. It lies in a ring of mountains, its runway ends at a steep drop-off, and, until recently, did not have a radar system. Nepal was never colonized by either its neighbors or any of the European powers, and was only unified in the mid-eighteenth century (Sattaur, 1996). Its isolation from the rest of the world and the extreme difficulty of transportation and communication within the country, however, make it difficult to say what unification meant. Additionally, the presence of a great multiplicity of ethnic groups and castes5—who often speak mutually incomprehensible languages and have distinct cultural traditions—makes one wonder if the unification of Nepal represented the establishment of a consolidated society or polity. Even today, while most men speak Nepali (which is related to Hindi), many women, and, in general, people from remote areas, do not. While English is commonly spoken in the cities, and Western culture is becoming more widespread through newspapers and television, interpersonal communication can still be problematic. Political instability adds to the problem. More than 75 parties were registered at the last election. Since 1990, when “multi-party democracy” replaced the monarchy, there has been a great number of elections and changes in the government. Recently, the rural areas of Western Nepal have experienced a rebellion by a Maoist group. In brief, politics in Nepal are in a constant state of flux. Social changes have not always followed political changes. The caste system, although less codified than in India and abolished by Nepali law, still largely determines occupational and educational patterns. For instance, most senior posts in government, business, or other administrations are held by members of the high castes: Brahmins, Chhettris, or high-caste Newars.6 Ultimately, a man’s loyalty is determined by the interests and connections of his family. The status of women is confused, at best. On the one hand, daughters and sisters are considered sacred; on the other, they cannot inherit their father’s goods unless they remain unmarried at 35. Maternal death is common, in part because of cultural beliefs about the polluting nature of childbirth. The daughter-in-law is the lowest and worst fed of the family, even though she may be carrying the precious heir. Little girls seem to die more often than little boys. It is hard to adopt boy babies; nobody wants girls. Men can take any number of wives either serially or all at the same time (even though it is illegal), but no woman can marry more 5
Including the Brahmin, Chhettri, Sherpa, Gurung, Magar, Tamang, Newar, Tharu, and various occupational castes, along with many more that have never been adequately catalogued. 6 The Newar people have their own caste system.
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than once,7 and if her husband dies she often remains the property of her husband’s family and becomes a slave, considered unlucky because she is responsible for the son’s death. There are no laws relating to abuse of women or children. Girls who look outside their caste for husbands, or who have sex outside marriage, are usually ostracized, and quite often die mysteriously or are openly murdered. Similar fates await children of cross-caste unions, especially if the parents were not married. Few women ever consider disobeying their husbands, as much for belief in the lightness of tradition as out of fear (Bennett, 1983).
Organization of Nepal’s Health Service Health services in Nepal are administered by the Ministry of Health, whose Minister is a member of the Cabinet. The country is divided into five administrative regions, further subdivided into 13 zones and yet further into about 75 districts (about 15 in each region). Regions are divided from north to south so that each has districts in the mountains, in the middle hills, and in the low-lying and tropical Terai. District Health Officers8 are responsible for public health administration but do not oversee hospital services.9 These are organized under the Regional Director. Within each district there are approximately 15 health posts which are administered by Village Health Committees.10 In the district of Kaski, a main health post and its satellites serves around 30,000 people. As noted above, health posts are staffed by community health workers and auxiliary nurses, not by doctors. A typical health post staff will include: a health assistant, who has about 3 years of health training after tenth class; one or two community medical auxiliaries (CMA’s) who have less education yet are responsible for some curative care; an auxiliary nurse midwife (ANM), whose role is mainly to dispense preventive care; a village health worker who surveys the health needs of the community by making house to house visits on an on-going basis; an administrator; and various aides. Sub-health posts have fewer staff: one CMA, one village health worker, and a “maternal-child health worker,” who does much the same work as the ANM, but has less training. Patient numbers seldom have any bearing on how many people work at a given health post; the staffing pattern is fixed. 7
Polyandry has been well-documented among ethnic Tibetans in the remote areas of Northwestern Nepal (Goldstein, 1987; Levine, 1987), but among the Hindu population which comprises the great majority of Nepalis the practice is unknown. 8 Usually, the District Health Officers are physicians and, at times, the only one in the district they administer. 9 Each district has a hospital, or at least a health center with a few beds. A Medical Officer oversees each hospital – although officers are often absent from their posts. 10 Attached to each health post are four to seven sub-health posts that are responsible for preventive care. All cases needing curative care are referred to the main health post.
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The health system of Nepal is fraught with problems. Not surprisingly, health posts are poorly equipped. A typical post will possess fetal and regular stethoscopes, a sphygmomanometer, adult and baby scales, sterilizer boiled on a kerosene stove, sterilizable instruments, needles, and syringes. Microscopes have been introduced in some areas, but often staff have not been trained in their use. Water and electricity are seldom available. Refrigeration is provided by an insulated box in which frozen plastic water bottles surround the vaccines; this heavy box is then carried to the health post on a man’s back which may involve walking for hours on rugged trails up and down steep mountains. Drug supplies are often erratic and inadequate.11 Another major problem are the frequent transfers of health personnel. Voluntary and involuntary transfers, both within and between districts, can take place at any time. Often half of the participants in a mental health training, for example, may be transferred to other districts within a few weeks with the result that the targeted district is once again without a health worker that has received mental health training. In addition, the worker who was transferred may not have the opportunity to use his or her newly acquired mental health skills because their new post is not likely to provide support, i.e., medications and further mental health training and supervision, for mental health care. Local supervisors seldom stay in any one health post for more than a few months. At the same time, village health workers, MCH workers, and junior staff are almost never transferred. The reasons for the transfers are not always obvious. The desire for professional advancement and personal gain are certainly factors in requests for voluntary transfers. The reasons for involuntary transfers must be investigated. These problems notwithstanding, the public health service is charged with providing both curative and preventive services that include programs in tuberculosis and leprosy, maternal and child health, immunization, family planning, preventive dental care, and nutrition, among others. In general, the most common conditions that are treated in the health posts are worms, skin problems (both rashes and wounds), upper respiratory infections, and depressive-type symptoms either recognized or unrecognized (e.g., headache and other recurrent nonspecific symptoms), and, of course, diarrhea. Ante- and post-natal care are also important functions of the health posts, as are minor emergencies, deliveries, intravenous rehydration, and local epidemics of a variety of infectious diseases. Community health education—in schools and among such groups as traditional birth attendants—is yet another responsibility of the health post staff.
11
Twenty-seven therapeutic substances, including gentian violet, paracetamol, and penicillin-V, are distributed to health posts once a year. The supply is usually exhausted within two or three months. After that it is possible, with the agreement of the Village Health Committee, to augment the drugs by using surplus funds from the accumulated 2-rupee charges.
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All this—in addition to being responsible for the collection of statistics and recording data on population and the range of diseases presenting at the health posts—is a tremendous volume of work and it is no wonder that staff often find it impossible to carry out their tasks. At the same time, remuneration is very low, probably less than $100 per month in most cases. The combination does not inspire high levels of motivation and morale, with the result that a full complement of staff will not be found in many health posts. In very remote or disadvantaged areas, the post may be even more or less permanently closed. Even fully-staffed and well-functioning health posts often fail to function adequately because of a lack of supplies, unpredictable staff attendance, and generally run-down buildings. The two 2-rupee charge (about 4 cents) for each visit does not help, either. For those reasons, the health posts do not inspire trust and most people either suffer their ill-health or, more usually, go to traditional healers for care.
Mental Health Infrastructure Only 22 of the doctors in Nepal are trained psychiatrists; of these, only three work outside Kathmandu. Another four or five are currently in training.12 Fewer than ten nurses have received formal training in psychiatry. There are now two clinical psychologists in practice. The one free-standing mental hospital, the National Mental Hospital in Patan, which was established in the late-1980’s in an old and run-down building that had been the site of a district hospital, has little in the way of resources. The facility has 40 beds, and care for patients is provided by two senior psychiatrists, one recently qualified psychiatrist, and one nurse who has had training in mental health. Other staff are assigned to the hospital irrespective of experience or preference. The Mental Hospital admits only the most serious cases, mostly acutely psychotic patients or those in severe delirium tremens. Patients generally stay up to one month. Treatment is mainly biological, including ECT, followed up by medication. On this regime most patients regain normality and can be discharged home. Rehabilitation services are limited, although more beds are being built for this in the countryside outside Kathmandu, and the Mental Hospital itself is expanding. Four government hospitals have small psychiatric wards, and another two provide out-patient services. However, with the exception of the Teaching Hospital at the Institute of Medicine in Kathmandu, these services are limited.
12
The mental health resources of Nepal are likely to expand greatly in the near future. Several Indian companies are in the process of establishing new private medical schools that will have full mental health services, in- and out-patient, and, of course, psychiatric training. As of this time, one has already started and another is nearing completion. These companies, however, have no interest in the provision of community mental health services.
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Until recently, psychotic patients were commonly confined in jails, where they might remain for many years.13 For example, one woman, now rehabilitated, had been incarcerated for 25 years and had forgotten her own last name as well as the name of her village. In view of this situation, Aasha Deep, a rehabilitation center for mentally ill persons, was founded by the Sisters of Charity of Nazareth,14 with the encouragement and support of Dr. Chris Wright, then director of the United Mission to Nepal (UMN) Mental Health Program, and Dr. Dhruba Man Shrestha, director of the Mental Hospital. At first, rehabilitation services meant taking six to eight women prisoners—who had committed no crime other than being severely mentally ill—into a house that was being used primarily as a school for mentally retarded children. Over time, the program grew and it became necessary to rent a separate house. Services were extended beyond the original focus of mentally ill women who had been in prison to include mentally ill persons of both genders whether or not they had been in jail. There are now two locations for the program: one in Kathmandu and one on the outskirts of the city. The rehabilitation work at these facilities has been quite successful. So far, only two or three patients have proved irremediable. Most patients return to families they may not have seen for many years, and most have learned a trade that they can use in the community or village, even if it is something as simple as taking care of animals. The promotion of mental health and mental health legislation in Nepal owes a great deal to the work of religious foundations, especially United Mission to Nepal, Sisters of Charity, and Maryknoll, as well as two senior psychiatrists, Drs. Dhruba Man Shrestha and Mahendra Nepal.
Traditional Healers in Nepal Nepali attitudes about health and disease, especially those regarding mental illness, remain grounded in religious and magical meanings and practices. Therefore, it should come as no surprise that people who are ill readily depend on traditional methods of healing. Nepal’s traditional healers probably number somewhere between 500,000 and one million. They come from all castes and tribes, may be male or female, and practice a very wide variety of healing techniques. Many of these arose in antiquity. Ayurvedic medicine, for instance, is based on the ancient Hindu scriptures known as Vedas and uses substances and techniques that have stood the test of centuries. A similar type of medicine is 13
There is no law regarding the care and treatment of mentally ill persons. One has been under discussion for about four years, and now that a National Mental Health Policy has been accepted, something might finally be done. 14 Whose mother house is in Kentucky, not to be confused with the order established by Mother Teresa.
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practiced by Baidyas, traditional doctors of the Newar people. Acupuncture, relatively new to the West, is ancient in Asia. Yoga and meditation are widely used for their healing power. In the hills, most traditional healing is based on animistic beliefs about the nature of the universe. Shamans, for instance, heal by invoking their familiar spirits: rhythmic drumming sends them, and often the patient too, into a trance. In the trance, the cause of the illness and the steps necessary to protect against it will be revealed by the god. The cause in this case is often traced to the ill-wishing of another person, or to an action which may have offended a powerful spirit. If the spirit is appeased or the witch neutralized, the sick person may recover. Shamans are known as dhamis, or jhankris, and their methods and beliefs seem to be common to most of Asia and even beyond. Similar beliefs are held by phuknes or “blowers,” who blow down a little pipe onto the sufferer or onto food he will later consume. Sacrifice can be used to avert the wrath of deities: one patient had cut a joint off his finger each time he had an attack of gall-bladder pain. His chief wonderment following surgery was that “he had not felt it when they cut him!” I have also seen healing carried out with incantation and offerings of fruit, flowers and flame. Many other forms of healing exist, as well. Traditional healing has attracted many Western adherents and researchers. However, so far as I know, little research has been carried out on the efficacy of the various types of healing. Certainly traditional healing can be harmful: traditional birth attendants may, for instance, pull down on the umbilical cord or push on the fundus, either of which can be disastrous. Some efforts directed at driving out a malicious spirit from the body of a mentally-ill person can also be disastrous, such as pouring boiling water or hot coals on the patient, or beating him with sticks. It is clear then that most methods of traditional healing are based on a concept of disease causation as being located outside the patient, involving the malevolence either of spirits or of other people, characterized as witches, or sometimes seen as the consequence of sins committed in a past life. This attitude has to be borne in mind by health educators, especially when planning community interventions, but also when training rural health workers. Traditional healers, besides being numerous, command a great deal of respect and fear from the community. Almost all of our patients have consulted at least one healer before making the journey to our door. If the healer forbids consulting a Western-style doctor or health worker, they will not come. For this reason, the community mental health program has been at pains to organize “seminars” where traditional healers, educators, and health workers can meet and enlighten each other as to their various beliefs and views. “Education” of the traditional healer is not the primary purpose of these seminars; the aim is to increase mutual respect and understanding, and to reduce the distance between the two groups, so that a sense of collegiality is encouraged on both sides.
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COMMUNITY MENTAL HEALTH PROJECT: 1984–1998 Aims of the Project In 1984, two expatriate psychiatrists—Drs. Marjorie Foyle and Christine S. Wright—working with United Mission to Nepal (UMN), initiated a community mental health program in Lalitpur, a poorly-watered, very steep and povertystricken district in the hills south of Kathmandu where UMN had been running a Community Development and Health Program (CDHP), which consisted of five rural and two urban health posts. In addition, CDHP was carrying out various development and income-generating activities in the district. The result of these activities was that health indicators in those areas of Lalitpur served by the CDHP were beginning to show signs of improvement.15 The aim of the mental health program was to bring mental health care to the rural poor, by integrating services into the already extant community health system. This was to be achieved by training health workers in the recognition and management of mental disorders. Community mental health was a new field for UMN, but was already well-established elsewhere. In Bangalore, India, a program had been set up in rural health posts some time before by the department of psychiatry at the National Institute of Mental Health and Neurosciences (NIMHANS).16 The main differences were that in Bangalore health posts were staffed by doctors as well as other highly-trained staff; communications were excellent and permitted frequent supervision by staff psychiatrists and social workers from NIMHANS, and health posts were generally of a reasonable standard of construction. None of these advantages applied to Nepal. The immediate stimulus and justification for the program was provided by the publication of a paper by a Nepali psychiatrist, Dr. D. M. Shrestha and colleagues (Shrestha, Pach & Rimal, 1983), who carried out research on the prevalence of mental illness in a village south of Kathmandu. They determined that among villagers over the age of nine, 2% were suffering from psychotic disorders (schizophrenia and bipolar disorder), and another 12% or so from “other mental disorders,” mainly depressive and anxiety neuroses. Alcoholism, mental retardation, and epilepsy were not included in the survey. In 1989, work published by Dr. Wright and colleagues (Wright, Nepal & Bruce-Jones, 1989) showed that, among patients presenting at two general hospital out-patient clinics, as well as in the health posts of Lalitpur, 24–27% could be demonstrated as suffering from a mental or emotional disorder. There is no reason to doubt that these data are reasonably reliable since they are similar to figures obtained in other 15
According to a UMN report, crude birth and death rates, as well as infant, child, and maternal mortality rates for the populations served by CDHPs are remarkably below the national averages. 16 Both Drs. Foyle and Wright had worked at NIMHANS.
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countries, and thereby acquire some validity. For example, a large cross-national study by WHO found that about 25% of all attenders in primary care were suffering from some form of neuropsychiatric disorders (Üstün & Sartorius, 1995). At about this time, a collaboration was formed between Dr. Wright and the Head of Psychiatry in the Institute of Medicine, Dr. Mahendra Nepal. In May of 1989, having obtained both funding and Government agreement, they set up the Community Mental Health Project (CMHP), which currently operates community mental health programs in four of Nepal’s 75 districts: Kaski, Banke, Syangja, and Morang.17 The original UMN program in Lalitpur district is still in operation, although the CDHP is beginning to turn its health posts over to Government administration. A basic premise of the CMHP was that new installations were not to be set up. The psychiatric services already in operation in the Institute of Medicine, strengthened by UMN, would work hand-in-hand with public health services in the districts to create mental health treatment services in health posts that were already in operation. It was also hoped that the Project would increase awareness of mental health issues in Nepal generally. The underlying philosophy was that of the Alma Ata accord of 1977: that mental health care is a necessary component of primary health care, since mental and emotional well-being are both essential to an individual’s health. This philosophy is difficult to put into practice. In spite of data from the World Health Report 1999 (WHO, 1999) that demonstrate that neuropsychiatric disorders comprise 10.5% of the total global burden of disease, it is hard to persuade even sophisticated and informed donors that mental health is a priority in a developing country. It is even harder to persuade government officials of such a priority. Infectious and parasitic diseases always command the most attention from politicians and the medical establishment. Adding to this imbalance of priorities, most negotiation and planning for health in Nepal is done by centrallyplaced senior officials who must compete with rival departments for scarce funds (Henderson, 1995). It is also the case that with the politically-unstable environment that has plagued Nepal in recent years, it has been difficult to maintain any continuity or to initiate fruitful discussions on the aims of the program, let alone influence attitudes or decisions. Nonetheless, the project has received a surprising amount of cooperation from successive officials. Maintenance of good relations with such people has been a priority of the program from the beginning. When I arrived in 1990, the Project started negotiations to extend the CMHP to Kaski, a district in the Western Region, which was chosen because an active psychiatrist was already posted there. Funded by UMN (via two foreign donors: one 17
This project is funded by Redd Barna (Norwegian Save the Children). Over time, the Morang program has gone over much more to child-related services (donor driven, but a good thing and going well).
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British and one Finnish) this program opened in 1992. Since then, the Kaski program has been extended to more of the Western Region (which has 16 districts), and somewhat modified to be less labor intensive. Also, a supervisor has been appointed by the program, and we have seconded a part-time “program manager” who supplements the managerial efforts of the psychiatrist. This is more efficient, but not so sustainable because of the increased cost. When the CMHP was set up originally, in 1989, it was planned as a demonstration project, a model program that the Government Health Service would be able to adopt and implement on a wider scale. Although that has not happened, the recently-ratified National Mental Health Policy document makes provision for such a nation-wide expansion of services. This policy was formulated during discussions between Nepal’s psychiatrists and officials of the Ministry of Health. It sets out the structure of future mental health services in great detail, including provision of adequate in-patient and out-patient services, rehabilitation, and community mental health on the CMHP model, decentralized to the various local government levels. It also makes provisions for post-graduate training in psychiatry, but it is difficult to see how sufficient money can be found, or personnel mustered, for training on such a scale. Too many other services are competing for funds.
Feasibility Studies An important policy of the CMHP is that no new area of work is opened without the full knowledge, agreement and cooperation of the local health administration. To this end, as soon as funding has been identified, staff members carry out a feasibility visit to the target district. In April of 1991, before establishing a second CMHP, a feasibility visit was made to Kaski district’s capital, Pokhara, which is about 200 kilometers west of Kathmandu. The Government psychiatrist at Western Regional Hospital, Dr. Kapil Upadhyaya, acted as our host. Four psychiatrists visited from Kathmandu: Dr. D. M. Shrestha, the chief Government psychiatrist and head of the Mental Hospital; Dr. Mahendra Nepal; Dr. Wright; and myself, as the prospective counterpart to Dr. Kapil. During the visit we met with a number of officials: the Regional Director of Health; the Hospital Superintendent and Matron; the chief of the Nursing Campus; and the District Public Health Officer and his supervisory staff. We visited several health posts where we talked to staff and patients. At each formal meeting we presented a collection of materials about the program and ceremonially received glasses of hot sweet tea. In the evenings, less formally, we entertained various officials at dinner or were ourselves entertained with long, leisurely Nepali meals. By the end of this three-day exercise, we had obtained enthusiastic support for the program from all the officials, especially from the Regional Director at the time, Dr. R. M. Sinha, who has continued to be a great advocate, first, as Director General of Health when the Department of Health was
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established and then, after his retirement, as one of the evaluators of the Kaski program in 1996. The program was officially inaugurated in Kaski district in March of the following year after the long process of submitting our proposal to different Ministries was finally completed. Indicative of the problems with transfers mentioned above, in the period since the program started, there have been six Regional Directors, five hospital medical superintendents, four district public health officers, three nursing campus chiefs, and two District Health Officers. Dr. Kapil, at the time of writing, is still in post.
Personnel The CMHP began in 1989 with only two psychiatrists and one indefatigable administrative officer—and she was available only part-time since it was necessary for her to continue working in another department. Since then both the UMN team and the one at the Institute of Medicine have increased greatly. The UMN team, as of November 1999, had three full-time and two part-time technical workers (one is Nepali). Two more technical workers are currently abroad; one will return after completing her B.Sc. training. There are also two administrative staff and two support staff, all of whom are Nepali. At the Institute of Psychiatry, the team consists of one professor, four lecturers, six residents, five administrative staff, and five support staff. All are Nepali. In addition, four members of the UMN team are seconded to the Institute of Psychiatry and to working in the Western Region. Finally, the team in the office of the Western Region consists of a psychiatrist, an administrator, a supervisor, a driver, and a peon. All are Nepali. In addition to the increase in personnel, vehicles are now available, the offices have expanded, each at last has a telephone, and computers have made their appearance. (I have yet to see a computer in any government office, so this is exceptional.)
Funding The original project area in southeastern Nepal has from the beginning been funded by Redd Barna (Save the Children Fund, Norway). The remaining three districts have been funded by two Christian charities, one Finnish (Finnish Evangelical Lutheran Mission, or FELM), and the other based in England (TEAR Fund). Smaller sums have come from other sources, notably from the Presbyterian Church of the United States. The salaries of the staff at the Institute of Medicine are paid mainly by the university, a government body. The living expenses of expatriates working through UMN are paid by church organizations in their countries of origin, so that unlike other NGO’s, expatriate personnel are no charge at all on project funding.
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The salaries of Nepali personnel working with UMN are, however, paid from donor funds. Drug funding for the project has been problematic. When the CMHP began, psychiatric medications were purchased with donor funds and distributed free of charge. However, as patient numbers grew, this became prohibitively expensive. Additionally, we were told categorically by the Director General of Health that we should not distribute unlimited amounts of free drugs, since the health authorities would never be able to continue funding on that scale and the program would not be sustainable. Since that time drugs have been provided on a very limited scale for the very poor. In areas where drugs were formerly given freely, this has been a major setback. Patients cannot afford to buy their medicine from the private shops which, in any event, have no incentive to stock the inexpensive drugs recommended by the program. In at least one area there are now efforts to set up revolving drug purchase schemes, but even then many people are too poor to buy drugs for the long periods necessary for schizophrenia or epilepsy. This is part of a nation-wide problem; the only bright spot is that medicines generally come from India, where they are relatively cheap, and do not have to be ordered from the West. The cost of the project has increased over time. This is partly due to rising expenses, especially salaries, and partly to expansion. The total cost of that part of the community project funded through UMN (which does not include the funding from Redd Barna) was budgeted at 1,450,500 Nepali rupees, or about $26,400 for the three districts, for 1997–1998. Usually, we are able to control expenses and come in under budget.
Government Support for Community Mental Health Most local officials, and quite a few senior health ministry officials, including several Health Ministers, have been positive about the project and have expressed their encouragement. Without this support, it would have been hard to proceed, especially because most of the staff of the Institute of Medicine team are paid, at least in part, from government sources, and all of the public health workers who carry out the program in the districts are wholly paid by the government— although they receive no extra incentives for mental health work.18 Nonetheless, mental health services are not an official component of the Government public health service. This means, for instance, that trainings scheduled by the Department of Health always take precedence over mental trainings scheduled by the project; no funds are allocated for the expenses of government staff visiting health posts to supervise the mental health work; and psychiatric drugs are not 18
However valid the philosophical basis of this may be, it remains true that the project involves extra work at the health post level. Some personnel do this work gladly, but not all.
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included on the list of medicines distributed to health posts. So far our efforts to change these policies have failed. The acceptance, this year, by the Nepali Cabinet, and then by His Majesty the King of Nepal, of a National Mental Health Policy document, may change this situation, since it provides for staff and training programs in all districts. This must remain a long-term goal. It must also be noted that the relatively modest sums required by the CMHP are unlikely to be completely underwritten by the Government at any time in the near future.
Training The training program has been designed to be as simple to deliver as possible. Groups of health workers19 receive short trainings in a central location with the content of the training tailored to their background and duties. Following the training each health worker receives the necessary materials (e.g., training manuals and patient record cards), for carrying out the work and a minimal supply of medicines. In the succeeding months, the health posts are visited by a supervisor to monitor the work and replace supplies if necessary. Often the staff will call patients at this time so that the supervisor can offer advice on difficult cases. (I am always struck by the distances people will walk, and the length of time they will wait, for these short consultations with the supervisors.) Later, refresher trainings are held at intervals for each group. Trainings for curative staff last nine days. The curriculum covers five main diagnoses that often present at the health post: psychosis, epilepsy, depression, anxiety, and hysteria. No attempt is made to differentiate between, for instance, schizophrenia and mania, or between the different types of depression. The emphasis is on what can be seen; diagnostic subtlety is not the aim. Since the more clear-cut cases are the most likely to respond to treatment, diagnostic criteria are kept to simple algorithmic patterns that are easy to remember and to teach. Causes, recognition and management are described in the broadest possible terms. Five inexpensive and reasonably safe drugs are prescribed: chlorpromazine, depot fluphenazine, trihexiphenidyl, phenobarbitone, and amitriptyline. Simple counseling techniques are demonstrated with role-play, but since counseling, in the Nepali language, translates as “advice-giving,” we have tried to shift the emphasis to “listening,” and to demonstrate its therapeutic benefits in clinical sessions. We visit health posts, out-patient clinics, and, sometimes, psychiatric wards, to expose participants to as many patients as possible. We observe their interviews and discuss their findings. We also introduce other topics, such as alcoholism, drug abuse, child mental health, and mental retardation; and touch on rehabilitation, sexual difficulties, and so on. But the main emphasis is on very I9
Usually each health post or sub-health post is represented by only one participant in each training.
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broad basic diagnostic categories and on what to do for those patients. We are not trying to cover the field of psychiatry, but to provide the health workers with a mental health “toolbox” that is commensurate with the understanding they already have for physical ailments. It is noticeable that some participants are particularly skilled and sensitive in the field. For instance, although we describe only grand mal epilepsy, several participants have learned to pick up and treat other forms of the disorder reliably. Many have considerable empathy with depressed patients. In Western countries, young people of the level of intelligence that we often find in these health workers would become doctors or other professionals. In Nepal there is no career structure for them, virtually no hope of advancement, and no chance of further education because of poverty and lack of educational resources. It is this, perhaps, that makes them so eager to learn.20 The different groups of health workers are trained separately. Thus, curative workers, namely health assistants and CMA’s, have a nine-day program and are trained in groups of twelve. Auxiliary nurse-midwives, preventive in function, have three or four day programs concentrating on recognition of illness in women and children. Village health workers and maternal-child-health workers (MCHW’s) have similar short trainings. The seminars for jhankris (traditional healers) last two or three days, involve up to 25 people, and concentrate much more on problem-sharing, drama, and ice-breaking activities such as games. Each group has its characteristic age structure. Curative workers are often young, argumentative, hasty; VHW’s and MCHW’s are middle-aged family people; jhankris may be ancient, but often bring young disciples. The high point of every training is the closing drama, when each team presents a playlet that demonstrates a facet of mental illness. Role-play is very popular; staff and trainers often participate along with the students. Recently, trainings have been started for other community groups—such as school teachers, police, and those working with street children, leprosy patients or poor families. Mental health training has also been carried out in the Bhutanese refugee camps, where mental health care is flourishing. Training Techniques We are still using a classroom lecture format mainly, the expected teaching style in Nepal. Students participate in clinical sessions, small-group discussions, dramas, quizzes, and games. Students enjoy overhead slides, but their use is limited by lack of curtains to darken the classrooms. We have some videos, but videos 20
Others, however, have neither skill nor application. I once found myself telling a young health worker that he would never identify “multiple physical symptoms” if he asked each patient only one question.
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made in the Nepali language are few, and those made in English tend to have very difficult vocabulary or impenetrable accents. Frequent power failures also restrict the use of these media.
Materials The production of educational materials has been an important activity from the beginning. At first, materials were adapted from those in use at NIMHANS in Bangalore. These original materials have been through many metamorphoses and completely new materials are being produced all the time. They are designed to be used in trainings and also in community education by the trainees when they return to their health posts. I will list a sample of the materials, but it will already be outdated. A training manual in English was produced within the first year of the program in Lalitpur. It is now in its third English and second Nepali edition. Each health post is given manuals in both languages; students can choose which they want. Together with the manual, each main health post is given a brightly-colored flip-chart illustrating all the major diagnostic categories. It is designed to be hung over the forearm so that the side facing the worker has a written description of the picture that is facing the audience. A sample “story” might be: “Raju is listening to two friends talking in the teashop. They are talking about ordinary things, but Raju thinks he hears them planning to kill him. People who have unreasonable suspicions of others, like Raju, may be suffering from mental illness.” The flipchart can be a potent tool in community education efforts, too. The presentation of stories about mental disorders often gives rise to animated discussion in the village long after the health worker has left; and the illustrations from the flipchart have been incorporated into an inexpensive folding card that is intended for use with smaller groups. Other community education materials are introduced during training. The hope is that they will later be used in the community, but they also serve to introduce the topic. For instance, cartoon-like leaflets illustrate stories based on the various diagnostic entities; posters and puppets are used in health-education exhibits; audio tapes of radio shows on mental health have also been produced. Another project has been the production of story-books designed for adult literacy classes. Each of three little books tells the true story of a patient treated for mental illness: a depressed woman, one with an epileptic son, and the third with post-partum psychosis. The team has produced, as well, an illustrated guide to the first year of life to promote awareness of the need for stimulation of the baby; another guide is for parents of mentally-retarded children. A more demanding way of increasing community awareness is to hold a “mental-health camp.” The camp is preceded by a period of intensive publicity in the district that involves all health posts. For a recent camp, a professional
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street-drama group was hired as part of the publicity campaign. They performed a very funny and energetic drama to a total of perhaps 1,400 people. The camp that followed was attended by unprecedented numbers—120 patients in two days, mostly from the local area. The video of this street drama, the story of a family affected by different kinds of mental and emotional illness, has been a very successful educational instrument: it is informative as well as amusing, and has its moments of pathos. Several deeply depressed women told us: “I saw my face in the street drama, and that is why I came.” Comments such as these help us begin to grasp the scale of the need in Nepal.
Report on Mental Health Camp at Gandruk Village, Kaski District, March, 1998 Gandruk is a village on the tourist trail, at about 6,000 feet, on the road from Jomosom to Pokhara via Ghorepani. Its population is about 8,000, mainly Gurungs and low-caste. The Gurungs are reasonably well to do because of army pensions and tourism; the other groups do not share in this prosperity much. The village is set on a steep hillside with views of the Himalaya; one’s immediate impression is of pretty white washed houses, flowers everywhere, and steep steps connecting everything. There is an office of the Annapurna Conservation Area Project, a health post, a high school, telephone service, a police station, and one or two shops. Mule trains which previously went to Tibet now clatter through on their way to Mustang. In all, Gandruk is very beautiful, at least in those parts seen by tourists. Every house has a latrine, the lodges are painted in bright colors, surrounded by flower gardens, and provide Western food and solar showers. However, in the poor areas where tourists do not go, it is a different story. The provision of health care is woeful. One medical auxiliary and an unmanned dispensary is not sufficient. The rich can, perhaps, go to Pokhara, but the poor cannot afford the bus fare and the walk could take several days for a sick person; then there would be the problem of lodging in town. It is no consolation to reflect that this situation is repeated all over Nepal. The CMHP team arrived in Gandruk on the evening of 6 March. The following morning we set up the mental health exhibition at a school with the permission of its headmaster and with the assistance of the CMA who was in charge of the local health post. The exhibits were hung on a cord around three sides of the school buildings. There were posters of mentally-ill patients—along with written explanations—taken from the flip chart. Then there was an exhibit of First Year of Life photographs, also with written explanations. There was also an exhibit of 12 posters relating to childhood development in mental and physical functioning. Training posters which have graphic depictions of mentally-ill people were displayed, too. Many of those who came could not read, so spoken
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explanations were given at intervals for groups of people. Those adults who could read were very enthusiastic in reading all the materials and even in reading to each other. We organized activities for children, such as building blocks, jigsaw puzzles and coloring books, in the central grassy area of the school. The smaller children showed a degree of concentration and long attention-span that is not always evident in Western children or in those from educated backgrounds. The older ones helped the smaller, materials were shared, and there was little quarreling. Through questioning, we found that many of these children came from the poorest of the poor, from scheduled castes and from families where several members had died. When it started to rain, the poorly-clad children were obviously cold, but this did not disturb their concentration. Initially, the puppet show was also set up in this area, but the rain forced it indoors. The performance was given twice and consisted of one story about a family with a drunken husband, a depressed wife, and children crying with hunger, and another that was about a child who refused to go to school. Video presentations were also given: Basu, a film both funny and moving that is about mental retardation and community-based rehabilitation; and a video of the street drama described above. In all, we estimated that about 400 people came to the exhibitions. On the following day, we set up the mental health clinic in the school. Patients were seen by paramedical workers first, and then evaluated by the psychiatrists. Ancillary help was provided by the health post CMA; a CMHP staff member evaluated several children for mental retardation. On the third day, we moved the clinic to the Health Post nearby. We saw another 40 or so patients; many more than on the first day presented with epilepsy, some of them children. Fortunately, we had brought medicine sufficient for the first month or so of treatment for these individuals. As on the day before, a CMHP staff member evaluated children, and found one who was partly deaf and had not learned to talk; this child had a deaf sibling. Holding the clinic in the Health Post also gave us the opportunity to do some teaching with the staff. All in all, we were fairly happy with the outcome of the camp. Of course such camps make little lasting difference in terms of improvement in individual cases; but the increase in community awareness and the campaign against stigma are important goals. At the same time, several observations were discouraging. First, there was a lack of medical facilities in Gandruk such that even for simple common ailments, medicine is not available, and even where it has been provided by the local Health Post, knowledgeable workers are not available to use it. Second, the questionnaire provided for screening for the presence of mental disorders gave a very high proportion of false positives. Finally, not enough medicine was stocked for the large number of depressed patients we saw.
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In-program Evaluation Evaluations of the trainings have been made from the beginning. A 24-question “Knowledge, Attitude and Practice”-type test is administered before and after each training of curative workers; simpler tests are given to other workers.21 Usually, but not always, students improve their score during the course of training. Trainings are evaluated, also, at the end of each day by the participants who fill out an anonymous question-list. Additionally, they participate in discussions during which they are encouraged to critique the training and make suggestions. Their comments often result in changes or additions to future trainings. An innovative evaluation method has been introduced for auxiliary nurse-midwives. The women are divided into two teams to compete in a mental-health quiz. The questions are made up by the opposing team. Small prizes are given to both teams. A further method of evaluation is provided by the recording system for mental patients. Patient record cards were originally designed to make diagnosis easier: the various symptoms are checked off under headings, and at the end of the interview the clustering of symptoms points to the likely diagnosis. The accompanying demographic and other data make these cards a useful evaluative tool. The numbers of patients seen at each health post give an indication of the energy and enthusiasm of the staff: at one health post in Kaski the number of new cases seen rose quite quickly to 200 after the mental health training; at another, where the in-charge has since been terminated, there were two. An assessment of the reliability of diagnoses of epilepsy at four health posts was made by a young psychiatrist who visited from South Carolina. He examined the records of epileptic patients at the four health posts, and at one selected health post, all the cases were called and re-interviewed. The conclusion was that of 16 patients22 who came, 15 were definitely epileptic and were being treated adequately. The same proportion of successfully-treated cases seemed likely from scrutiny of the records.
Official Evaluations There have been three official evaluations. The first, in 1990, dealt with the first five years of the UMN program in Lalitpur. It was carried out by program staff. The second, in 1993, was requested by Redd Barna in respect to the community program in Morang, as well as the other work of the Project, i.e., administration, accounting, reporting, teaching nurses and students, etc., all of which was then 21
Questionnaires are not used with traditional healers since few of them can read or write. It is noteworthy that only 16 epileptic patients, out of a population of perhaps 10–15,000, had presented at the health post. Since the area is remote and access to the health is difficult, it is likely that a large proportion of epileptic patients are receiving no treatment at all. The deleterious effects on them and their families are easy to imagine. See Results and Discussion section of this chapter.
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funded by Redd Barna. It was carried out by a visiting psychiatrist from Norway, the then Director-General of Health, Dr. R. M. Sinha, and the Nursing Campus Chief from Morang. The third evaluation, conducted in September 1996, concerned only the community mental health work in the Western Region at that time (Kaski and Syangja), and was undertaken by a consultant from NIMHANS, Dr. Mohan Isaac, and Dr. Sinha. The last two evaluations were arranged for the purpose of assessing the CMHP for continued funding. Both were favorable in accepting the program on its own terms. Both found the work worth continuing and made some suggestions for improvement, especially in the area of supervision. The Redd Barna team was firm in its recommendation that more attention be paid to the emotional needs of children, “who form more than 40% of Nepal’s population,” and in recommending more attention to development concerns and to counseling. Evaluations “from the outside,” which take only a cross-sectional view, are useful in giving an overview and, perhaps, pointing out broad issues that are not so obvious to those involved in day-to-day management. But there is a tendency for them to be over-optimistic, particularly when they are generated by a request for further funding. There is a great need for the program itself to initiate ongoing quality assurance procedures—in fact, to know more about what it is doing. Results need to be collated and analyzed thoroughly, so that the implications of trends occurring in the various areas become clearer. In this way the program can continue to grow and improve.
Other Activities From the beginning, the community work has been only part of the total activities of the Mental Health Project. Other activities include: 1. Block training and in-depth training for nurse tutors: In-depth training is intended to equip tutors to teach mental health to their students; block training, similar to health-assistant training, can change attitudes and awareness, but does not, unfortunately, create enough self-confidence for teaching. 2. Specialist training for doctors, nurses, and others: Until recently this took place outside Nepal, in India, Pakistan, or Bangladesh, funded by the Project. In 1997, however, a specialist training program (M.D. Psychiatry) was set up within the Institute of Medicine. A clinical psychology degree, and a diploma in psychiatric nursing will start soon. 3. Child guidance clinic: This has been started in a small way by one psychiatrist and a clinical psychologist. Expansion is planned. 4. Rehabilitation of chronic mentally ill patients, especially those who have been confined in jails: This was set up by Maryknoll Nepal, a Catholic agency. Several team members consult to it, especially the occupational therapist.
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5. Promotional activities: Including seminars, newspaper articles, media appearances, speaking at home and abroad. 6. National Mental Health Policy—its promotion and the promotion of subsequent legislation: There is at present no body of law relating to mental illness. 7. Psychiatric Association of Nepal: This is promoted by the CMHP.
RESULTS AND DISCUSSION The CMHP of the Department of Psychiatry of the Institute of Medicine, as opposed to the pilot program in Lalitpur, has been in operation since 1989. There have been changes, but the basic structure of the program remains unchanged. Although outcomes have not been measured, there are patterns that can be observed across all four districts.
Patient Numbers Looking at patient data from individual health posts, it is obvious that the numbers are low in comparison with those expected, even in areas where the program has been in operation longest. Most health posts have an active case load of no more than 30 patients, some much less. In 1993, 421 active patients were reported by 16 health posts in Morang. The total number of patient visits in the four years of the project were: Psychosis: 557 Depression: 1124 Epilepsy: 4878 Mental retardation: 34 “Neurosis”: 144 Morang has a population of roughly 300,000. Assuming prevalence rates already quoted, including epilepsy at perhaps 2–3% (6,000–9,000) and mental retardation 4% (12,000), the only figure that even begins to approach the expected value is that for epilepsy. Even then, making several broad assumptions,23 it is apparent that there is a tremendous gap between those in need of treatment and those receiving it.24 Yet, at the same time, one should not dismiss the significance 23
With an average of 1,220 patients visits per year for epilepsy and assuming that each patient visits a health post 3–4 times per year, the district of Morang may have had approximately 300–400 active patients per year. 24 The extent of the treatment gap is similar in Kaski. Syangja and Banke, which are more remote, show a much larger gap.
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of this apparently minimal treatment coverage. Not treating epilepsy, especially in children, has serious consequences, such as increased risk of neurological damage and injuries from falls (Desjarlais, Eisenberg, Good & Kleinman, 1995). It is not possible to be certain of the reasons for this shortfall in treatment. The topic, however, is worth discussion. First, the prevalence figures may not be accurate. It has been assumed all along that the figures found by Shrestha and colleagues (Shrestha et al., 1983) can be extrapolated to the rest of Nepal. It may be, however, that the village in the Kathmandu valley where that study was done is not fully representative of the country. This does not seem likely given that the prevalence data from Nepal are in general accordance with data from other low-income countries. The only way to settle this question would be to conduct prevalence studies in the remote hills, the Terai, and the new urban areas. Second, there is the possibility that persons with epilepsy are not seeking treatment at the health posts. It would be surprising if this were not the case. Indeed, the proportion of cases of any disease, physical or mental, presenting at the health posts, is probably quite low. TB and leprosy, both about as common as psychosis, are seen even less frequently in spite of costly and long-running programs. Cases of pneumonia, digestive disorder, urinary tract infection, all common, also do not present in anything like the numbers in which they may be assumed to occur. Reasons for not seeking care have several roots. In addition to those already discussed, there is the factor of “opportunity cost” of the visit. Somebody must accompany the sick person to the health post, which will likely take at least a whole day, so that essential work at home is left undone. This is complicated by high rates of staff absenteeism at the health posts and the erratic availability of medicines (see below). Thus, an unforgiving calculus does not always make seeking medical treatment (for any condition) clearly worth the cost of visiting a health post. Third, the availability of medicines is a major problem. In all project areas, psychotropic medication was at first distributed free of charge. This became increasingly costly, and in 1993, after the Redd Barna evaluation, the Director General of Health, who had been one of the evaluators, advised us that it was not permissible to give medicine free on a scale that could not later be sustained by government. After free distribution was stopped, numbers declined drastically. It is said that after a time numbers will mount up again and patients will buy their medication in the bazaar, but this is not yet obvious. Fourth, there is the question of whether patients are seeking treatment elsewhere. All four of the project districts are situated on good roads, making it easy to get to hospitals and clinics. Morang and Banke, especially, are close to the Indian border, Kaski and Syangja not far from it. It is possible that people are seeking care in North India where there are several huge psychiatric hospitals founded during the British era. But traveling to India takes time and money, and it seems unlikely that this accounts for large numbers of cases. Certainly, large
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numbers are seeking care from jhankris, even though the healers say that they cannot successfully treat those who are suicidal, psychotic, or have “seizures with blood coming from the mouth,” i.e., true epilepsy. One factor affecting access to care is the reluctance, or even community sanctions, around discussing negative emotional feelings in a village setting. It is perfectly acceptable to describe one’s physical symptoms, even at great length and in great detail, but emotional symptoms are ignored and dissembled by the patient. For example, I may have taken a long history of multiple pains and other physical symptoms from a patient, and then turned to questioning her on her inner feelings, relating perhaps to her social situation, as I would in a Western country. Instead of answering, she is likely to immediately return to a repetition of her physical woes. She appears literally not to hear a question that is perceived as unacceptable. If I ask directly, for example, “Did this make you angry/sad/ fearful?” she and the person with her will often laugh. One learns other ways of asking such questions which are important for diagnosis. In light of these community sanctions, the mental health camps assume more importance because they would appear to be an effective method of combating the stigma of mental illness. Raguram and colleagues (Raguram, Weiss, Channabasavanna & Devins, 1996) in South India did an elegant study in which they established this as a cultural characteristic of their region. They found that to admit to feelings of sadness, misery or anger might actually damage the chances of oneself or one’s family members being able to marry, or might lead to being ostracized from village activities. I have discussed this with Nepali colleagues who confirm that this could happen in Nepal, too. In consequence, emotional difficulties do not receive recognition or sympathy from other people, and are suppressed. Taken altogether, it does appear that there are significant numbers of mentally ill and epileptic people in the villages of the project areas who are not receiving medical care—though they are almost certainly seeing traditional healers. At the same time, one must recognize that if all cases did, in fact, come to the health posts, those clinics would be swamped and could not possibly cope with the volume.
Satisfaction and Attitude Change A true measure of satisfaction and attitude change among community members and health staff would require detailed surveys which have not been done. Nevertheless, there are indications that those affected by the program are reasonably satisfied. Students usually express satisfaction with their training, and if they have suggestions these tend to be for longer training, more frequent training, or more refreshers. Such positive comments may be due to cultural barriers against giving offense, but even in anonymous evaluations, criticism of content and method
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has been constructive for the most part, too. Students often request more subjects, especially more training in counseling. Another positive indicator is the increasing sophistication of answers to questions posed by the instructors. For instance, I turn to the class and ask, “What are the causes of depression?” And someone answers, “Poverty.” This is a far cry from the early days when everything was ascribed either to magic or to malnutrition. Additionally, training is often requested by other districts and other NGO’s, in fact more than we are able to carry out. Thus, there is ample evidence that the health post staff are reasonably satisfied with the trainings. Nevertheless, a good deal of dissatisfaction has been reported. Some of this is the normal grumbling about daily allowances (beyond normal pay), quality of snacks, quitting time too late, etc., which is inseparable from any training. In particular, since we do not pay allowances that are as high as those of large international NGO’s,25 we are subject to criticism since one way that people supplement their ordinary incomes is with daily allowances for training sessions. Mental health awareness is increasing in the project areas. Health staff often refer relatives to us for help, or take advantage of the new services themselves; patients tell us that they have come because of a successfully-treated friend; sometimes patients will come because they have seen one of the leaflets or brochures. One hears much the same account when speaking with providers at NIMHANS, that the success of treatment is the best advertisement for the service. If that is the case, one would expect that, in the future, the stigma attached to mental illness will decrease and that the treatment gap will continue to become narrower. Awareness seems also to be increasing in official circles. Frequent visits to the Ministries, social contacts, and distribution of materials have all contributed to this. The acceptance by the Cabinet of the National Mental Health Policy document—at least in principle—will strengthen this awareness. The most serious causes of dissatisfaction among both trainees and community concern the areas of medication supply (which have been noted above) and supervision. Decentralized community mental health efforts depend vitally on supervision. While it is necessary to monitor the training program for consistency and appropriate content, it is even more important to monitor the subsequent performance of the health workers in situ. The problem of adequate supervision has been solved by other groups in various ways. The team training mental health workers for refugee trauma in Siem Reap, Cambodia, for instance, is overseen by professionals who visit regularly from Harvard University. The very successful community mental health programs in Bangalore, India, and Rawalpindi, Pakistan, are supervised by psychiatrists and other professionals who visit each
25
It seems that some organizations inflate their training allowances so as to achieve their targets.
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health post on a regular basis. In a district as large as the Punjab this is more than a full-time job. The community work in Hyderabad, South India, is carried out by teams from the university psychiatric department. Without effective supervision the work dwindles and dies, as has happened with some WHO programs that provided training and no follow-up. In the Nepal CMHP, supervision was designed to be run by the District Public Health Officer’s (DPHO) staff who are not doctors, in the same way that the care itself is delivered by health post staff, who are not doctors. Supervisory staff receive the regular block training of nine days along with health post in-charges, to whom they are equivalent in rank. This is followed by specialized training, making for a total of about six weeks. Supervisory staff then visit each health post as part of their regular duties. The visits are intended to provide further teaching and discussion of cases, monitoring and checking of patient records and supplies, staff motivation, and an opportunity to give teaching to other grades of staff. Many factors have worked against this apparently well-designed model. Identification of suitable staff is not always easy. Usually the DPHO appoints the person he considers most suitable; this is not always the most talented person, or even one with training. Since there is no money set aside for expenses, the position is not highly coveted: no daily allowance is given, and if the supervisor has to travel by bus or burn fuel in his own motor-bike, his expenses are not reimbursed. It is a principle of the CMHP not to augment government salaries, and as yet mental health work is not recognized officially by the Health Education Department; consequently no allocations are made. The visits to health posts by supervisors might be worthy of study. It is very difficult in Nepali culture to criticize or correct anyone directly, especially if the individuals are of equal rank. Such criticism is not taken well, and is not likely to change behavior for the better. In this climate, visits by the DPHO supervisor may not achieve their objective. Another factor concerns transfer. Not once but several times a trained mental health supervisor, skilled and well-motivated, has been transferred unexpectedly to a distant site. One promising candidate did not have time to visit even one health post before being transferred. The program has attempted to circumvent this by placing our own trained personnel in the district, to carry out supervision in conjunction with DPHO staff and to improve motivation generally. This approach holds promise, but inflates the budget. In Kaski district, Dr. Kapil Upadhyaya, the project officer and psychiatrist at the Regional Hospital, has provided an adjunct to the supervisory system. When the health workers come down from the hills for days-off or to collect their pay, they are welcome to visit his clinic, observe his patients, and discuss problem cases. This is very effective, but it depends on the presence of a psychiatrist—a problem because only three doctors with psychiatric training are in post outside Kathmandu.
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Adequate supplies of medication and adequate supervision appear to be important prerequisites for a community mental health program. Both are hard to furnish, and the problem has not been satisfactorily solved. Clearly the use of trained professionals such as psychiatrists for supervision is not feasible, but it is probably not desirable either given the cost and rarity of such professionals. The provision of free medicine is equally unfeasible. These difficulties are not unique to Nepal, and efforts to solve them are in progress all over the world. It will be helpful to stay current with these efforts, and, in the meantime, pursue our own solutions.
CONCLUSIONS The Strengths of CMHP in Nepal Its Longevity The program has been running in its present form since 1989. If one counts from the early years in Lalitpur, it has lasted since 1984. During this time it has evolved continuously, developing new procedures and trying new ideas. The institutional strength of the program is evident in that all this has been accomplished despite the fact that one of the founders has departed while the other, Dr. Mahendra Nepal (who remains the overall coordinator), is able to increasingly delegate day-to-day management to others. Other members of the team have come and gone without significant disruption. In part, this has been possible because the CMHP team has been formed as a partnership from three sources: the Mental Health Program of UMN, the Institute of Medicine Department of Psychiatry, and the Government public health services in the program districts. Success has depended on good will and cooperation between the partners, and as the Western Region evaluation team remarked, good will and cooperation have been very obvious. Team members have changed through the lifetime of the project, but the high level of motivation and commitment to the project goals have been maintained. Teamwork of this caliber is not common in Nepal; it has been very largely generated from within the group, is maintained by frequent meetings, discussions, workshops, and a common focus on the main objectives of the work. The combination of national and expatriate leadership, with the national leader taking the pre-eminent role, has been an asset to the program. It is a combination that has worked remarkably well and has increased support for the program in areas that might not otherwise have been much disposed to help.
Program Design Basically, the program is simple in concept, simple in design and simple to deliver. This simplicity has resulted from a paring-down from more complex
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beginnings. It is now possible to add modules without substantial rethinking or redesigning. The program is also appropriate to its setting in basic health care systems in rural Nepal—which results in part from having been designed by Nepali professionals who are at one with the culture. The program is not imposed from a foreign design: it has grown up within its own setting. Again, the integration of the training and health care into the existing public health services, with all their imperfections, has been an asset to the program. This is immeasurably simpler than setting up separate structures which need their own administration. It is decentralized, with each area having some autonomy. It is also “deprofessionalized”—a necessity in a country with few professionals. Most important, the various grades of trainees find the instructional material interesting. They are enthusiastic participants in training and with proper supervision they remain enthusiastic about the work.
Influence on Other Programs The basic design of the CMHP has been adopted by at least two other national training efforts—the National Tuberculosis Program and the Oral Health Program of UMN. It has been very instructive to exchange experiences with the leaders of these programs.
Training and Community Education Materials The team has generated a great quantity of teaching materials. Production of materials has become a sort of industry into which all members are drawn. For instance, the guide for mothers of handicapped children was drawn up by an Australian physical therapy student who came for six months.
Affordability As has been shown, the program is affordable by most standards. However, so far it is not affordable by the Nepali Government.
Vulnerabilities of the Program Team The team is not large and most members are working at or beyond capacity. Plans to enlarge the number of professionals working in the CMHP are under way, but fully qualified mental health professionals will be too costly for some time to come. The best approach remains the training of more health workers, in situ, so that they can, in turn, offer mental health services and train others.
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Nature of the Milieu The program is vulnerable not only to high-level political changes but also to organizational chaos. The health services were subjected to a very radical reorganization in 1992–93, and successive governments have added refinements to that reorganization. This has made some sections of the public health service chronically uneasy; and it is a confusing and difficult system with which to work. In addition, accountability in the health service is lacking, and is most noticeable in the fact that some workers do not appear at their posts at all.
Lack of Documentation Documentation of the program is vitally necessary. In fact, large quantities of documents are generated, giving not only numbers of patients, of diagnostic entities, of demographic characteristics, and much more, but also qualitative information which can be inferred from analysis of patient record cards. The documents are copied and collected, but analysis is time consuming and personnel are limited. This aspect of our work will eventually need its own department.
Lack of Research Here again, time and personnel constraints, as well as lack of money, prevent a great deal of the very simple work that is necessary. There is a crying need for research into prevalence, prognosis, outcome, and many other basic aspects of mental health. Even the simplest head-counting comes up with fascinating results, such as the recent finding that of five groups of women, those leading the most remote and rural lives reported the highest levels of distress. However, mounting such expeditions into the remote hills, or even into areas not so remote, is prodigal of time, people and money, as well as extremely strenuous.
Gaps in Curriculum Both evaluation teams felt the curriculum had deficiencies, specifically in the areas of problems of childhood and alcoholism. Both are quite prevalent in Nepal but are not stressed in the trainings. Because childhood distress and abuse of alcohol are not perceived in Nepal as problems capable of solution, such patients seldom present at the health post. Both are also difficult to treat at health post level. Nevertheless, efforts are being made to add these subjects to the curriculum.
Referral System Each health post is provided with referral forms that patients should present to doctors to whom they are referred. Not all psychiatrists fill in their recommendations
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on these forms, even if the patient arrives holding one. And some patients never return to the health post. This is basically a deficiency in the clinics, which are few and over-worked, rather than in the program design.
Community Support Community acceptance, which is growing, is not equivalent to community support. There is no strong grass-roots demand yet for mental health services and little community ownership of the program. This seems to be due to a lack of community awareness. It is therefore necessary to extend formal training to nonmedical community groups, such as village health committees, schools and police. This approach, which has started, seems likely to bear fruit. My colleague in the Mental Health Program, Valerie Harwood, an Occupational Therapist, has been able to stimulate the formation of a self-help group of parents of adult disabled people in part of Patan. This is going well at present, but it remains to be seen whether it will flourish and expand. The rehabilitation center, Aasha Deep, sponsors days for relatives to visit residents in the facility and consult with staff. Again, whether this leads to broad-based family associations or patient groups is open to question, especially given the reticence of Nepali people to speak about such problems with people outside their families.
Expansion Of the two evaluation teams so far, the one from (Redd Barna) felt that the project was spread too thin and should consolidate, whereas the Western Region team felt that the program should expand into other districts of the region.
What is the Future of this Program? The Short-term The CMHP has been continuously changing and developing since it was established. Its future will bring further modifications and developments. Some possibilities may be suggested. The establishment of the new postgraduate program for training psychiatrists and others in-country should directly benefit the CMHP in several ways. Trainees will likely be required to spend a period of time in one or another of the program districts, participating in every aspect of the training, supervision, and care. If this does become a requirement, it will bring fresh minds and fresh ideas to bear on the question of how to best bring mental health services to the health posts. Each student will also be required to write a thesis during his or her three
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years of study. Students may be encouraged or even directed to take as their subjects those aspects of the community program that most require investigation. If an advisor can be found who can monitor the technical and statistical aspects of these investigations, the published results will greatly increase the body of knowledge on mental health and neuropsychiatric disorders in Nepal. There is difficulty in finding good research direction in Nepal, where such people are greatly stretched. A research department is badly needed in the Project as a whole; this would benefit our mental health efforts across the board. So far we have just one overburdened research assistant. An increase in research activities might well be supported by universities in the West, at least three of whom have shown an interest. The cost of traveling to Nepal has hitherto been a deterrent to people wishing to help us; in the reverse direction, the intellectual isolation of Nepal has held back our development. However, with the increase of electronic communications such support and advice need not necessarily involve advisors in actually visiting Nepal (although it is helpful for such people to see conditions for themselves at least once). Electronic communications have already increased our contact with the community of scholarship worldwide. It is essential for the integrity of the program that it communicate with others in the field, increase its knowledge and benefit from the work of others. Previously such communication was denied to us, since books and journals are expensive and quickly outdated and international meetings usually impossible. Access to the resource of the Internet, which recently became available to us, appears to give us the potential to join the international community, hopefully with mutual benefit. In the case of the supervision problem, it is clear that much more structure is necessary, even assuming that the supervision, or at least the monitoring of supervisors, will be carried out by our own employees in the districts. I have drafted a questionnaire, laying out, in a very simple form, a protocol for visits of supervisors to health posts. It is short enough not to be threatening, and most of the information is collected by observation rather than direct questioning. The observations can then be made the basis for discussion on the spot. It will be possible to document increasing skill on the part of individual workers. The questionnaires, which include some information from patients, can then be used to plan further surveys of effectiveness, awareness and outcome.
The Long-term The community mental health program in Bangalore, India, is supported by the resources of the very large and famous NIMHANS. Yet even there it is not clear whether the community program is self-supporting. In Rawalpindi, Pakistan, little or no outside funding is utilized; the Pakistani government requires that all provinces set up CMHP’s. Nepal is many times poorer than either of these countries
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and government support for nationwide coverage will be more problematic; it is a question whether the program will outlive its foreign funding, in the sense of being sustainable by the Government of Nepal. On the one hand, several staff and various resources (such as supplies and vehicles) are supported by grants and the government has not so far appeared able or willing to support those necessary items. On the other hand, an excellent relationship has developed between the leadership of the Project and the administration of the Institute of Medicine. This may lead to the possibility of increased support in the future. In any case, outside funding will be necessary for some time to come. The main difficulty from a financial point of view will be the provision of medicines. International agencies provide free drugs for both TB and leprosy, neither of which is as common as severe mental illness, and against which efforts have been successful in reducing both incidence and mortality. If a serious effort could be made to demonstrate both the considerable prevalence of mental illness and its real cost to the country, opinion might swing to providing drugs, at least, for psychotic illnesses, severe depression, and epilepsy. All these disable the sufferer for prolonged periods, preventing earning and causing social chaos. Treatment of epilepsy is beginning to attract international interest. It would be a pity if this diverted attention from mental illnesses. Of course, only in developing countries is epilepsy seen as a mental illness; perhaps the neuropathological basis of true mental illnesses needs to be stressed to donors! If the program is to survive and expand, it may be necessary to modify it in the direction of being even less expensive than at present. This could also boost government acceptance and recognition, which will be necessary for nationwide expansion.
Program as a Model This program provides a model of what can be achieved under even the very difficult circumstances I have described. Short of all-out warfare, it is hard to imagine a situation where the obstacles to providing community health care are so evident. In order to provide that model, and in addition to its other justifications, it seems worth perpetuating the program. There is an increasing number of people interested in studying our methods and in possibly adapting them to their own circumstances. Apart from resource provision, it may be that political will and accountability within the health services would be greater in other countries. This would certainly facilitate implementation of a similar program. In fact, all the major difficulties—lack of funds and personnel, poor communications, poor facilities, lack of administrative controls, lack of awareness—may be less evident elsewhere. If the model can be made to operate successfully under such adverse circumstances, it should run much more smoothly in a less disadvantaged country.
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REFERENCES Bennett, L. (1983). Dangerous wives and sacred sisters: Social and symbolic roles of high-caste women in Nepal. New York: Columbia University Press. Desjarlais, R., Eisenberg, L., Good, B., & Kleinman, A. (1995). World mental health: Problems and priorities in low-income countries. New York: Oxford University Press. Goldstein, M. C. (1987). When brothers share a wife. Natural History, 96(3), 38–49. Henderson, P. L. (1995). Donor and government constraints to sustainability in Nepal. Health Policy and Planning, 10(Suppl S), 17–27. Levine, N. E. (1987). Fathers and sons: Kinship value and validation in Tibetan polyandry. Man, 22, 267–286. Raguram, R., Weiss, M. G., Channabasavanna, S. M., & Devins, G. M. (1996). Stigma, depression, and somatization in South India. American Journal of Psychiatry, 153, 1043–1049. Sattaur, O. (1996). Nepal: New horizons? (Oxfam Country Profile). Oxford: Oxfam UK and Ireland. Shrestha, D. M., Pach, A., & Rimal, K. P. (1983). A social and psychiatric study of mental illness in Nepal. United Nations Childrens Fund, Nepal, Kathmandu, Nepal. U.S. Census Bureau (1999). International Data Base (IDB). Available: http://www.census.gov/ftp/ pub/ipc/www/idbnew. html Üstün, T. B. & Sartorius, N. (Eds.) (1995). Mental illness in general health care: An international study. Chicester: John Wiley & Sons. World Bank (1998a). Nepal at a glance. Available: http://www.cdinet.com/DEC/wdi98/new/countrydata/countrydata.html. World Bank (1998b). Nepal Country Brief. Available: http://www.worldbank.org/html/extdr/offrep/ sas/np2.htm World Bank (1998c). World Development Indicators. Available: http://www.cdinet.com/DEC/wdi98/ new/databytopic/databytopic.html#E WHO (1999). World health report 1999: Making a difference. Geneva: Author. Wright, C. (1992, November). Mental health services in Nepal: Past, present and future. Presented at the World Congress of Social Psychiatry. Wright, C., Nepal, M. K., & Bruce-Jones, W. D. A. (1989). Mental health patients in primary care services in Nepal. Asia-Pacific Journal of Public Health, 3, 224–230.
Chapter
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“Our Lives Were Covered in Darkness” The Work of the National Literacy Mission in Northern India ALEX COHEN
INTRODUCTION From Central and South America through sub-Saharan Africa, the Middle East, South Asia, China, Southeast Asia, and much of Oceania one finds distressingly high rates of illiteracy (Doyle, 1997; King & Hill, 1993; UNICEF, 1998; Thompson, 1994). This lack in the ability to read, write, and perform basic arithmetic tasks has been identified as “one of the major social ills” (Cárceles, 1990, p. 20) facing the peoples of low-income countries in that illiteracy—and female illiteracy in particular—is associated with high rates of fertility, infant and maternal mortality, and poverty. In turn, these conditions of life, and the social and mental health problems with which they are found, perpetuate themselves from generation to generation (Desjarlais, Eisenberg, Good & Kleinman, 1995). In India high rates of illiteracy are associated with membership in Scheduled Castes or Tribes,1 rural residence, patriarchal social structure, and poor physical and mental health. For Indian women in particular, high rates of illiteracy are only one manifestation of severe gender inequities that can also be seen in relatively high rates of mental disorders and in excess mortality. 1
Before independence the tribe or caste of every person was recorded in the census. Beginning in 1951, the Government of India decided to abolish the practice generally, but continued to record information regarding specific so-called Scheduled Tribes and Castes (Sharma, 1994).
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This chapter will: 1) offer a review of what is known about female literacy and its effects on health and social well-being; 2) examine these issues as they relate to India, paying close attention to how female illiteracy is associated with poor social status, relatively high levels of mental distress, and a disturbing gap in the female to male ratio; 3) provide an historical overview of adult literacy programs in India; 4) present an account of site visits to literacy campaigns in Himachal Pradesh, Rajasthan, and Delhi; and 5) consider the potential long-range success of the work of India’s National Literacy Mission and the lessons it offers to those engaged in efforts to improve the health, mental health, and social wellbeing of low-income populations in general, and of women in particular.
GLOBAL OVERVIEW OF FEMALE LITERACY Following World War II, UNESCO promoted large-scale literacy2 programs in the developing world in the belief that universal literacy would lead to economic and cultural progress (Winchester, 1990). However, by the 1980s, the failure of these efforts was evident. While the world’s illiteracy rate decreased from 32.9% to 26.8% during the period 1970–1985, the absolute number of illiterate persons increased from 760 million to 857 million, and, as of 1995, the absolute number of illiterate persons had risen to nearly 1 billion (Wagner, 1996). At the same time, literacy rates for men increased far more rapidly than for women (Cárceles, 1990); only 38% of women were literate in the least developed countries of the world (UNICEF, 1998).3 These data are startling because literacy, and female literacy in particular, is seen as critical to enhancing the quality of life among the poor peoples of the world. During his tenure as Chief Economist at the World Bank, Lawrence Summers (1994) declared that “investment in girls’ education may well be the highest return investment available in the developing world,” in that educating women produces overall improvements in child health, lower fertility rates, and reductions in maternal mortality. This view, bolstered by extensive research, has become an axiom in the fields of development studies, public health, education, and, in general, the social sciences.4 2
Basic literacy is the ability read and write a short simple statement about one’s everyday life, while functional literacy denotes an ability to “engage in all those activities in which literacy is required for effective functioning in [one’s] group and community and also for enabling a person to continue to use reading, writing and calculation for one’s own and the community’s development” (UNESCO, 1978, cited in Lind & Johnston, 1986, p. 338). 3 There are serious questions about the reliability of data on literacy because statistics are not derived by direct testing, but rather from census data, self-reports, or reports made by officials in charge of the literacy programs (Cárceles, 1990; Lind & Johnston, 1986; Wagner, 1995; 1992; 1990). 4 The work of LeVine and colleagues (LeVine et al., 1991) is among the most often cited research on the benefits of female literacy. See also: Bicego & Boerma, 1993; Caldwell, 1979; Caldwell
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FEMALE ILLITERACY IN INDIA The persistence of endemic illiteracy and educational backwardness in India has many adverse effects. It limits, in general, the freedom and well-being of the Indian masses, and has a direct role in the relative deprivation of women in particular (Sen, 1997, p. 22).
It has been estimated that more than 50% of the world’s illiterates are living in India (Abraham & Lal, 1995)—approximately half a billion people, the great majority of whom are women. Female literacy rates in India have always lagged behind those of males. In 1961, the national literacy rate (for persons five years and above) was 28.30%.5 The difference between the genders, however, was about 25 percentage points (40.40% for males and 15.35% for females). In 1991, although the national literacy rate had almost doubled to 52.21%, the absolute numbers of illiterate persons had increased,6 and the gender differences remained virtually the same (64.13% for males and 39.29% for females).7 The women of Rajasthan are at a particular disadvantage. As of 1991, their overall literacy rate (20.44% vs. 54.99% for men) was the lowest in India. In the rural areas, the literacy rate for women was less than 12%, while it was almost 48% for men (Chand, 1993). Even in urban areas, where the literacy rate for women was much higher (50.2%), it lagged well behind the rate for men (78.5%). If Rajasthan was a nation, it would have the largest literacy gender gap in the world (Drèze, 1999). The results of the Census of India 2001 show that the situation has improved somewhat: the national literacy rate is now 65.38% and the gap between males (75.85%) and females (54.16%) has decreased to about 21 percentage points Continued & McDonald, 1982; Cebu Study Team, 1991; Cleland & van Ginneken, 1988; Goodburn, Ebrahim & Senapari, 1990; Guldan et al., 1993; Hammad & Mulholland, 1992; Hobcraft, McDonald & Rutstein, 1984; Hobcraft, McDonald & Rutstein, 1985; Jain, 1985; Joel, 1994; King & Hill, 1993; Querubin & Mantala, 1995; Ruel, Habicht, Pinstrup-Andersen & Gröhn, 1992; Sandiford, Cassel, Montenegro & Sanchez, 1995; Simmons & Bernstein, 1982; Spratt, 1992; Stromquist, 1992; UNICEF, 1998; Victora, Huttly, Barros, Lombardi & Vaughan, 1992. For a critical consideration of these issues see the work of Wagner (1990; 1992; 1995; 1996). For a critical consideration of the situation in South Asia see Jeffery and Basu (1996a). 5 One problem in citing literacy statistics in India – or anywhere for that matter – is the basis for the denominator when calculating rates. Various denominators are used: total population, persons five years and above, persons seven years and above, and persons fifteen years and above. Each denominator makes for a different rate and can make comparisons over time or between different sources problematic. Rates of illiteracy based on a denominator of persons five years and above (as in the Census of India 1961) will be lower than rates based on a denominator of persons seven years and above (as in the India Census of 1991) even when considering the same population. Unless noted otherwise, the data cited here are based on a denominator of persons seven years and above. 6 From 267 million illiterate persons (five years and above) in 1961 to 328 million (seven years and above) in 1991 (National Literacy Mission, 1996; Chand, 1993). 7 India’s gender gap in literacy rates is the sixth largest in the world. Only Bhutan, Syria, Togo, Malawi, and Mozambique have gaps that are greater (Drèze, 1999; United Nations Development Program, 1998).
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(Census of India 200lc). This trend was even stronger in Rajasthan, where the literacy rate jumped to 61.03%, and the rate for women more than doubled to 44.34%. Nevertheless, the disparity in literacy rates for men and women remain significant, reflecting the persistence of rigid patrilineal kinship systems which marginalize women (Das Gupta, 1998).
FEMALE–MALE SEX RATIO In much of the country, women tend in general to fare quite badly in relative terms compared with men.... This is reflected not only in such matters as education and opportunity to develop talents, but also in the more elementary fields of nutrition, health, and survival (Drèze & Sen, 1995, p. 140).
The most troubling indicator of severe gender inequities in India is the female–male sex ratio (FMR). Because of their longer life expectancies, females outnumber males in most of the countries of the world. The opposite is true in India. Excess female mortality is due, in part, to maternal mortality, but is mainly brought about by the systematic neglect of the health and nutrition needs of girls and women (Visaria, 1963; Chatterjee & Lambert, 1989; Das Gupta, 1997; 1987). As of the early 1990s, it has been estimated that between 22 and 37 million Indian women were “missing” (Sen, 1992; Coale, 1991)8 from the population because of gender-based mortality differentials. Among children 0–4 years, mortality rates (per 1,000) were higher among females than males—the reverse of what is found in most countries of the world (Cohen, 2000). This pattern in India continues well beyond childhood and into the late twenties, and, in some states, into the late thirties (Drèze & Sen, 1995; Joshi, 1993). More distressing, however, is that the FMR worsened over the course of the 20th Century. In 1901, there were only 972 women for every 1,000 men; by 1991 the ratio had fallen to 927 (Drèze & Sen, 1995).9 Historically, Kerala has been the only exception to this 8
The problem of “missing” women is not exclusive to India. Sen and Coale estimate that between 60 and 100 million women were “missing” worldwide as of the early 1990’s. See also Das Gupta (1998). 9 Interestingly, FMR has varied according to caste, with the decline most pronounced among the scheduled castes. In 1901, the Chamars, who comprise the great majority of scheduled castes in Uttar Pradesh, had an FMR of 986 while the State average was 937. By 1991, the FMR for all scheduled castes in Uttar Pradesh had fallen to 877. In contrast, the FMR among the martial castes, which are near the top of the caste hierarchy, has changed very little: 887 (1901) to 878 (1981) (Drèze & Sen, 1995). The reason for the sharp declines in the FMR of scheduled castes, which was particularly steep after 1961 (the all-India FMR for scheduled castes fell from 957 to 922 between 1961 and 1991), is not apparent although Drèze and Sen maintain that it may reflect a trend among the scheduled castes to emulate the cultural practices of higher castes. Mayer (1999) offers another interpretation of the data. The rapid decline in the FMR of Scheduled Castes may be the result of gender differentials in the demographic transition.
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phenomenon. In 1901, Kerala’s FMR was 1004 and, by 1991, it had increased to 1034. The decade of 1991–2001 saw both encouraging and distressing trends. Contrary to predictions (Mayer, 1999), India’s FMR for all age groups did not continue to fall but, in fact, rose to 933. However, among the age group 0–6 years, the FMR fell sharply from 945 in 1991 to 927 in 2001 (Census of India 2001b). Evidence suggests that this was the result of widespread sex-selective abortion, particularly in the states of Northern India (Dugger, 2001a,b).
GENDER AND MENTAL HEALTH [T]he greater noted prevalence of common mental disorders in Indian women, especially depression and somatization, requires clinical and service attention. Equally supportive of this difference between mental distress and illness, is the increasing awareness of the association between distress and social circumstance in the case of women. Research into the causes of women’s distress is noticeably absent in India, with most studies seeking only biological explanations (Davar, 1999, p. 240).
Indian women suffer from common mental disorders at about twice the rate of Indian men. Research has found that female gender and poverty are the most important factors associated with the prevalence of common mental disorders, principally depression and mixed anxiety-depression (Patel, Pereira, Coutinho & Fernandes, 1998). Davar (1999) estimates that up to 11% of women in the community have common mental disorders, while an additional 4% experience significant mental distress.10 Of particular relevance to the topic of female literacy in Northern India, research in a rural community of Himachal Pradesh found that women displayed significantly more symptoms of somatic disorders and anxiety than men, and that their higher prevalence of disorders was strongly associated with lack of education, poverty, and low caste (Shirali & Kanwar, 1987). Evidence from Southern India provides further support for the importance of education to the mental well-being of women. A community psychiatric survey by Carstairs and Kapur (1976) determined that women had higher rates of psychiatric symptoms and that higher levels of education had a positive effect on the well-being of both genders. While low levels of education did not seem to have a deleterious influence on the mental well-being of those in the age group 15–20 years, lack of education did have a deleterious effect on the age group 21–40 years, a finding that lead Carstairs and Kapur to speculate that low levels of education restricted 10
In two surveys of villages in West Bengal, Nandi and colleagues (Nandi et al., 2000) found that rates of mental disorders among women remained over a period of 20 years almost twice as high (14.7% and 13.8% in 1972 and 1992, respectively) as those of men (8.7% and 7.4%).
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life opportunities and, therefore, resulted in mental distress at that time of life when individuals were seeking to establish themselves in their worlds. These effects seemed to be particularly strong among women. The mental health problems of Indian women are compounded by gender inequities in access to hospital and psychiatric care (Adityanjee & Wig, 1988). For example, the allotment of beds in government mental hospitals is 73% for men and 27% for women. The situation in private psychiatric centers is not much better: 60% and 40% for men and women, respectively. Male to female utilization ratios for facilities for mentally handicapped children ranges from 6:1 to 3:1 (Davar, 1999). Furthermore, Indian families underestimate the health needs of women and very likely do the same about the mental health needs of women. To some extent, this is caused by lack of awareness, but “indifference or gross neglect must also be part of the explanation” (Davar 1999, p. 48). Given the low status of women, especially young daughters-in-law, and that decisions about health care are usually made by the male head of the household, it should not be surprising that the mental health needs of women generally go unattended. In cases of epilepsy, mental retardation, and psychosis, girls are often not brought to care until it is time for them to be married (Raghavan, Murthy & Lakshminarayana, 1995). Women who suffer from severe depression may not receive care until they attempt suicide. Even when women seek care in primary health centers, their mental disorders frequently go unrecognized because the somatic symptoms they present are discounted as of little importance or mistaken for physical disorders. This neglect must be viewed within the wider social contexts in which it occurs. The mental health of Indian women cannot be separated from poverty, malnutrition, overwork, lack of education, and poor physical health (Raghavan et al., 1995), as well as the phenomenon of excess female mortality. Another factor is violence. Indian women “grow up in a climate of fear and violence. Violence is not an aberration from women’s point of view, but rather it is all around them .... Much of the common mental distresses that women are prone to can be linked to being in violent situations” (Davar, 1999, p. 98). Data on so-called “kitchen accidents” provide a chilling insight on this world of violence. When dowries do not meet expectations, young wives may be abused by their husbands and in-laws. At times, young wives are doused in kerosene and set on fire. Thousands of such instances occur each year, and the frequency of female deaths due to “accidental burns” has increased steadily since 1979 (Heise, Raikes, Watts & Zwi, 1994). The abuse may also take the form of wife-beating which, it is believed, is quite common and is associated with alcohol use by husbands (Rao, 1997). Women who are less valued (because of their lack of education, failure to bear male children, or the fact of having been sterilized) are at particularly high risk of being abused. Harassment about dowries and the lack of resources to escape from marriage may also be the reason some women commit suicide. In sum, one must conclude that the psychosocial environments in which they live demand that Indian women
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“need special care because of their special problems and life situations” (Davar, 1999, p. 53).
HISTORY OF LITERACY EFFORTS IN INDIA The situation of literacy in India is a reflection of the political situation in the country and of the structures of privilege and poverty on which the Indian polity rests. Adult education is inherently progressive, and adult literacy is even radical in its assumptions and consequences. Naturally, governments and the power elite like to handle literacy with care (Bhola, 1987, p. 267).
The initiation of efforts to attain universal literacy in India grew out of the fervor of the independence movement and its objective of raising the nation’s standard of living (Bhola, 1987). Yet, despite policy statements to the contrary, post-independence governments have all but ignored the education goals that were set forth in the Constitution. Indeed, India has managed “to combine the highly egalitarian slogan of free and universal education with extreme inequality in practice,” (Drèze & Sen, 1995, p. 119) with the result that India has not met its needs for primary education or adult literacy programs (Bhola, 1987; Sen, 1989; 1997). This is not surprising. India ranks 82nd of 116 countries in its proportion of government expenditures for education, and compulsory education has never been established anywhere in the nation (National Literacy Mission, 1996). In 1901, literacy rates in India were extremely low—only 9.83% of males and a mere 0.6% of females could read (Chand, 1993). By the time of Independence in 1947 the situation had not improved substantially: only 14% of the population was literate, only one child out of three had the opportunity to attend primary school, and the education system continued to be characterized by large gender, socioeconomic, and regional disparities (National Literacy Mission, 1996). The Indian government initiated serious attempts to eradicate illiteracy in 1959.11 The first project was in the state of Maharashtra. However, the life of the program was brief and substantial numbers of its students relapsed into illiteracy. The next effort, the Farmers’ Functional Literacy Project (FFLP), begun in 1967, was established in response to the Green Revolution. Believing that farmers who were functionally literate12 would be better able to follow instructions for the use of fertilizers, the fundamental goal of the FFLP was to increase crop yields. The program was discontinued in 1977 because of inadequate financial support from the government. The Nonformal Education for Youth program, started in 1975, was an attempt to increase the functional skills and productivity of young people, 11
This overview is summarized from a report on literacy efforts in India (Ghosh et al., 1994). See also: Bhola, 1987; Bordia & Kaul, 1992; Department of Education, 1988; 1993; Directorate of Adult Education, 1996. 12 See note 2.
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as well as to encourage the development of greater social awareness. This program also failed due to lack of funding. In 1978, the National Adult Education Program (NAEP) was established, the first nationwide program that focused exclusively on eradicating illiteracy among persons 15–35 years old. It had three components: literacy (reading, writing, numeracy); functionality (ability to apply skills in day-to-day life); and social awareness (knowledge, understanding, and the ability to take action on issues of importance to the individual, the community, and the society). NAEP and FFLP were later integrated into the Rural Functional Literacy Project (RFLP) which, by 1987, had 513 programs operating throughout India. Associated with every program were up to 300 adult education centers that each had 25–30 students. However, RFLP met with limited success. Between 1978 and 1988 only 44.22 million people were enrolled and, of those, less than half became literate, far short of its goal of 100 million. Despite disappointing results, RFLP did succeed in several areas: participation of women and persons from Scheduled Castes and Tribes was high, quality of teaching and learning materials was good, and the program worked well when special recruitment procedures were used to attract students. Even those areas in which the program did not perform well offered lessons for the development of subsequent programs. Among the lessons were the need: to upgrade the quality of training for teachers; to improve the environments in which classes took place; and to integrate basic literacy, post literacy, and continuing education programs to prevent large numbers of neo-literates from relapsing into illiteracy. The National Literacy Mission (NLM) was established in May 1988 with a mandate to make 100 million people, between the ages of 15 and 35 years, functionally literate by 1997. During its first two years, the NLM continued with the center-based approach of the NAEP, and met with limited success because of continued problems with wide-spread corruption and an inability to get substantial numbers of people into the classes. The program model changed in 1989–1990 following the stunning success of the “campaign” approach that brought universal literacy to the district of Ernakulum in Kerala. The key components of this strategy were the development of a comprehensive plan for a specific district, the coordination of the district administration, voluntary groups and social activists, the utilization of volunteers to teach the classes, and the acknowledgment that on-going efforts were necessary to ensure that neo-literates did not lose their skills. The campaign approach to literacy was rapidly adopted and is now the model used by all NLM programs.
SITE VISITS TO LITERACY PROGRAMS IN NORTHERN INDIA In September, 1996, at the invitation of Professor Veena Das of the Delhi School of Economics and Mrs. V. K. Jena, Director, Directorate of Adult Education,
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Ministry of Human Resource Development, Government of India, I traveled to India to examine the social and mental health effects of literacy programs. Soon after my arrival, Mrs. Jena made arrangements for me to visit, over a period of three and a half weeks, a number of programs in Northern India. Mr. Amit Prasad and Ms. Srirupa Guha (students at the Delhi School of Economics) acted as research assistants, translators, and travel companions. Together we visited programs in the Solan and Shimla Districts of Himachal Pradesh, the Bhilwara and Chittorgarh Districts of Rajasthan, and the Nangloi Jat Constituency in western Delhi.
Himachal Pradesh The State of Himachal Pradesh begins at the edge of the fertile plains of Punjab and Haryana, and then rises steeply into the verdant foothills of the Himalayas where the climate is tropical and subtropical below 1,500 meters and temperate up to 3,600 meters (Verma, 1995). Further north and west, the alpine regions of the range extend up to 4,500 meters. Above that altitude, up to as high as 6,500 meters, the mountains are covered permanently by snow and glaciers. Within this geographic and climatic diversity are a population of 6 million persons (Census of India 200la) who speak some 60 distinct dialects. Increased productivity in agriculture during the period 1951–1983 gave Himachal Pradesh one of the fastest growing economies in India. As of 1987–1988, its poverty rate was less than one-half of the national average (Table 1). Perhaps more importantly, economic development was not concentrated narrowly in one particular group; the great wealth disparities that characterize most of India are less severe in Himachal Pradesh (Sharma, 1987). During this period of economic growth, Himachal Pradesh also outpaced the rest of India in the area of education: per-capita government expenditures on education were about twice as high as the national average, and the teacher-population ratio was the highest in India (Drèze & Sen, 1995). This commitment to education produced tremendous gains. As one can see in Table 2, Himachal Pradesh is far ahead of national rates of literacy among children aged 10–14 (second only to Kerala), proportion of persons who have completed primary education, and percentage of rural children aged 5–9 who are attending school. In 1951, the literacy rate in Himachal Pradesh was only 7.7%, the lowest in India and less than one half the national average (Sharma, 1987). By 1981, however, the State’s literacy rate had surpassed the national average, and by 1991, had far exceeded it (Table 2).13 The spread of literacy continued throughout the next decade with particular improvement among women. Furthermore, data (Tables 1, 13
Although disparities do exist. Literacy rates for women, Scheduled Castes and Tribes, and rural populations remain relatively low (Sharma, 1987). See Table 4.
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2, and 3) support the notion that Himachal Pradesh has done well in raising the overall social well-being of its population, especially that of females. Rates of infant mortality, total fertility, percentage of married women aged 15-19, female participation in the labor force, and rates of prenatal care and child vaccinations are all better than the national averages. The ratio of female deaths to male deaths among persons aged 0–4 in Himachal Pradesh is the lowest in India, 0.882, and is an indication of dramatic achievements in the health of girl children. Most striking is the fact that Himachal Pradesh’s FMR rose from 884 in 1901 to 976 (second only to Kerala’s figure of 1036) in 1991, a remarkable achievement in light of the sharp decrease in the national FMR during the same period (Drèze & Sen, 1995). The data from the latest census (Census of India 2001b), however, show a reversal in this trend with a decrease to 970 in the FMR of Himachal Pradesh, a phenomenon that will be discussed below.
Solan District The Solan District, which has a population of approximately 400,000, is in southern Himachal Pradesh (Chand, 1993). Its agricultural economy seemed to be thriving at the time of our visit. We were told of a recent bumper crop of tomatoes and of the need, at least in the village of Bair, to hire Nepali laborers to tend to the fields. This success may have been due, at least in part, to the State’s investment in education: a nearby agricultural college was introducing new crops and farming techniques to the area. During the initial phase (1992–94) of the literacy campaign in Solan, some 35,000 persons completed the course of instruction even though there had been some initial resistance. Farm work and business were major priorities, and residents
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either did not have time to spare or did not wish to devote what little time they did have to attend literacy classes. Those who possessed rudimentary mathematical skills saw no reason to learn more. People who were doing well economically did not want to be bothered with learning how to read, especially if it meant associating with the poor people who comprised the majority of students in the literacy classes. At the time of our visit, the literacy campaign was engaged in an effort to reach the 62,900 people between the ages of 9 and 45 years in the district who were still illiterate. The great majority of these persons were women, not only because women had always had relatively high rates of illiteracy, but also because they had found it difficult to attend classes because of the dual demands of farm and domestic work. However, making women literate was only one goal of the campaign. NLM officials in Solan spoke frequently of Mahila Sarmanta, the “upliftment” or “awakening” of women as being one of their major objectives.14 They mentioned, for example, that women in a nearby village had successfully petitioned the government to close a liquor shop. Presumably the literacy classes had made them aware of a growing anti-liquor sentiment nationally and had informed their local organizing efforts. During meetings in the villages of Bair and Mashivar, we first heard women neo-literates speak of their experiences. In the beginning, they said, many men were not happy about their wives spending time in the classes. Eventually, this resistance gave way and the women now felt they had been freed from the strictures of purdah.15 Several women spoke of how their newly acquired literacy had made them less shy in social interactions and had given them more selfconfidence and self-respect. The ability to make lists for marketing gave them a sense of independence and increased agency. Indeed, the task of marketing had been fundamentally changed now that they could read signs in shops and count money. One woman related how being literate made a recent trip to Kerala far more enjoyable because she could decipher schedules, read bus destinations, and was better able to make inquiries. Proudly, she told of how, during this trip, she had helped an illiterate woman find her way in a bus station. The classes taught the women more than basic literacy and numeracy skills. As a result of classes devoted to health issues, mothers said that they were now devoting greater attention to their children’s health and personal hygiene, e.g.,
14
This does not mean that women have achieved much of a central role in the administration of the Solan literacy campaign. Of the five NLM officials in Solan, only one was a woman and she seemed to have a marginal role. 15 Purdah, which means “curtain,” refers to a social system of female seclusion that proscribes the behavior of women in regard to men. It is a central component of many societies in South Asia, and is associated with gender-based customs pertaining to social status, property rights, arrangement of marriage, division of labor, and proper social behavior (Papanek, 1982).
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making certain they brushed their teeth, took baths and wore clean clothing, and received all of the appropriate immunizations. Villagers were taking advantage of a local health post in Mashivar whereas very few had done so previously. Women had learned to check expiration dates on medicine bottles and to ask questions about the medicines that were being prescribed for them and their children. More villagers were aware of family planning. They claimed that the overall health of the community had improved because of what they had learned about preventing the spread of infection. Finally, a polio vaccine campaign had been successful because the literacy classes taught women about the importance of immunizations. Changing attitudes about gender were attributed, as well, to the literacy campaign. Girls had begun to attend school in numbers equal to those of boys, and many girls and young women were beginning to express an interest in pursuing their studies beyond the 10th standard. The number of child marriages for girls was on the decline (Table 3, percentage of married women aged 15–19). Boys were no longer receiving more medical care than girls. Now that they knew how to read, women were developing a desire to more actively participate in the wider world. The women in Bair, in particular, now displayed a lively interest in national politics and paid close attention to news reports on television. In Mashivar, the neo-literates reported that the influence of the literacy campaign had become obvious in other ways, too. People had started to plant flowers and were keeping the community clean and beautiful. Previously, people did not care about where they threw waste paper, but now they were making certain to put it in garbage bins. They were taking better care of their poultry and crops. Water sources were being kept clean and care was taken to avoid using those areas as latrines. No doubt, this was not a direct result of the literacy classes, but came about mainly as the result of the District Commissioner’s campaign the previous June to clean the water sources. Nevertheless, the successful use of the literacy classes as focal points for organizing activities indicates their importance as new social forms that make significant contributions to positive social changes for individuals, families, and communities. One of the most interesting outcomes of the adult literacy campaign was its potentially positive effect on primary education. Mothers had begun applying their new skills to check on the school work of their children with the result that the children’s schoolwork was reported to be improving. One could expect, too, that having learned the importance of education, mothers would encourage children to stay in school. In view of the high percentages of Indian children who fail to complete primary education, this would be an important outcome. Taken all together, the traditional worlds of the women of the Solan District were undergoing momentous changes. The women with whom we spoke associated these changes with the acquisition of literacy. No doubt, the dynamics of change were more complex, but one cannot question that the literacy campaign had played a role in the on-going transformations.
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Shimla District Shimla is north of Solan and well into the temperate zone of the foothills. During the summer months, when the weather in Delhi and Calcutta was too hot for the liking of the British, the city of Shimla was the seat of imperial power in India. Now it is a tourist center, relatively prosperous, capital of its district, and the state capital of Himachal Pradesh. While in the district, we visited three programs: one in a Ladhaki16 community within the city, another in the village of Matholi, and a third in the village of Bichiri. The women in these programs repeated much of what we had heard in Solan. In Shimla, women related how their new abilities in arithmetic meant that they no longer needed to rely on husbands or fathers to calculate how much they had spent in the market. One woman spoke of how she was now able to follow cooking recipes. Another recounted how she was learning knitting patterns from magazines, even when they were written in English. Others spoke of checking their children’s homework and their enjoyment at being able to read film posters. In Bichiri, a woman of 62 years spoke of how she had started learning to read two years before and could now read religious works and do simple arithmetic calculations. Other women spoke of encouraging their children to study more; how caring for children, traveling, and shopping were easier now that they could read. A volunteer teacher related that she had taught her mother-in-law to read. In turn, her mother-in-law now encouraged other women to become literate. New-found self confidence was apparent, too, in that they were able to tell us openly that they wanted a sewing and stitching center so that they could acquire new skills and earn money. They stated, too, that they wanted the literacy program to help them find jobs, and expressed displeasure about the fact that the program lacked pens and paper. These site visits also provided striking contrasts in the nature of the programs and insights about their administration. Of the three, the program in the Ladhaki community of Shimla was the most encouraging. Mrs. Veena Sandal, the woman who ran the program, was a prominent figure in the local YWCA. She dressed informally, sat on the floor with the students and volunteers, and, except when speaking directly to me in English, always spoke in Hindi because that was the language the women understood. Her feelings for the women in the program, and their’s for her, were obvious and genuine. Most importantly, the neo-literates were enthusiastic about the program and had learned a great deal. The same could not be said of the other programs that we visited. In Matholi, where the literacy classes were administered by the State Resource Center (SRC) and run by volunteers from the Gyan Vigyan Saniti (People’s Science 16
Ladhak is a region in northern Jammu and Kashmir that has, in recent years, experienced political unrest and violence; many of its people have migrated south.
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Movement),17 we were regaled with a testimonial to the “Shimla Model.” Noted, mainly, for its efforts “through people, for people,” this model emphasized community organizing and featured the use of simplified reading materials (prepared by the SRC) that provided information on a wide range of subjects. The truth of the reports about the great success of the “Shimla Model” was suspect, however. First, the Gyan Vigyan Saniti volunteer sat with his back to the women students and teachers and spoke in English, a language that was unintelligible to all but the visitors. We later learned that the volunteers from the SRC had, in fact, lost interest in the village and that more than half of the students had dropped out of the program. Despite the administrative weaknesses of the program—even the lack of sincerity on the part of the people in charge—the literacy campaign had made a difference. The women of Matholi echoed their counterparts elsewhere and talked enthusiastically about how the ability to read made it possible for them to determine the bus destinations, gave them a more positive attitude to education, and was prompting them to make certain that their children went to school. They spoke of how the literacy campaign had brought a more cooperative spirit to the community and how they were now reading newspapers. One can only wonder how successful this program might have been had the SRC been truly interested in it. The program in Bichiri, which was run by the NLM, was also disappointing, but for different reasons. The village had no need of a mass literacy campaign. Out of a population of 1400, only 55 people (about 4%) in the area were illiterate. Of these, most of whom were above the age of 30 years, 46 had become literate by participating in the classes. Those who dropped out were all older than 65 years. For all the pomp and ceremony that marked our visit (garlands of fresh flowers, food, performances of songs and dances by school children, and required attendance by some of the women in the literacy class), the program lacked pens and paper. In view of this, the people of Bichiri might have been better served if available resources had been spent on programs of vocational and continuing education which would have been of benefit to a wider cross-section of the community. It was only after visiting Matholi and Bichiri that we discovered that the SRC and the NLM were embroiled in a bureaucratic struggle over the control of all of the literacy programs in the district. Apparently, our receptions in the villages had been orchestrated in the hope that we would report that one program was superior to the other. In our last conversation with the District Commissioner, we managed to remain neutral, but later felt disappointed that bureaucratic concerns had replaced educational ones.
17
The People’s Science Movement originated in Kerala and was the organizing force behind the first successful literacy campaign in the district of Ernakulum.
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RAJASTHAN Culturally, economically, and geographically Rajasthan is starkly different from Himachal Pradesh. A large arid region in northwestern India, Rajasthan occupies more than 10% of the nation’s land area and its 44 million people (as of 1991) comprise about 5% of the total population of India. On virtually all socioeconomic and health measures (Tables 1–3) Rajasthan is not only worse off than the rest of India, but closely resembles the least developed nations in the world (Abraham & Lal, 1995; Murthi, Guio & Drèze, 1997). At particular disadvantage are Rajasthani women, who are subject to the practice of purdah, restricted property rights, neglect of female children, and the separation of married women from their natal families (Drèze & Sen, 1995). The differences between Himachal Pradesh and Rajasthan are particularly evident in their respective FMRs and literacy rates. In 1991, the literacy rate in Rajasthan was the second lowest in the nation,18 and its rate for females was the lowest (Table 2). In the rural areas, the situation was worse. Only 11.59% of rural women were literate, about one-third the national rate for women, about one-fourth the rate of rural males in Rajasthan, and a little less than one-seventh the rate of urban males (Chand, 1993). In the rural areas of the district of Banner (where literacy rates were low for everyone), gender disparities were especially alarming: 4.2% of women and 31.83% of men were literate, a ratio of 1:7.6. The worst literacy rates in Rajasthan were found among the women of the Scheduled Tribes and Castes: 4.42% and 8.31% respectively (Table 4) with the situation in the rural areas, once again, much worse (Drèze & Sen, 1995). Because Rajasthan also had the lowest percentages of female enrollment in both primary and middle schools (Abraham & Lal, 1995) (Table 2), it did not seem likely that female literacy rates would improve substantially over the next decade. Yet, data from the census of 2001 show that there has been tremendous
18
Only marginally better than the rate (38.48%) in Bihar.
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improvement: female literacy rates are now more than twice what they were in 1991. Much the same has been true for the FMR. Whereas the FMR in Himachal Pradesh increased dramatically between 1901–1991, the rate languished in Rajasthan, increasing only marginally from 905 to 910 in the same period (Drèze & Sen, 1995). Other data from 1991 seemed to indicate that the differences between these two states would widen in the period 1991–2001, because the ratio of female to male deaths among children aged 0–4 years was 1.190 in Rajasthan— the highest in India—while in Himachal Pradesh the ratio was 0.882, the lowest in India (Table 1). This did not occur, however. In fact, by 2001 the FMR in Rajasthan had risen to 922 while it fallen to 897 in Himachal Pradesh (Census of India 200Ib). The reasons for this apparent contradiction will be discussed below.
Dausa The district of Dausa, which was only established in the early 1990s, is located 60 km east of Jaipur. It is a poor disrict. People make their living as rural artisans, small land holders, and landless laborers. About 50% of the population belong to Scheduled Castes and Tribes, and, not surprisingly, literacy rates in 1991 were quite low: 36.87% overall, 56.75% and 14.15% for males and females, respectively. Had Dausa existed as a district at the time of the 1991 Census, its female literacy rate would have ranked 435th of 453 districts in the country (Abraham & La1, 1995; Sharma, 1994). At the time of our visit, Dausa’s literacy campaign had been sanctioned for only about three months and was in the midst of the preparatory phase that is known as “environment building.” The goals of this phase were to organize and motivate volunteers, to raise community awareness of the importance of literacy, and to publicize the classes. A major component of these activities were music and dance performances—by local Kala Jathas (cultural groups)—which extolled the virtues and importance of literacy. Audio cassettes of the performances had been produced and distributed throughout the district. Posters and banners were being utilized, too. Due to a lack of electricity in the district, it was not feasible to use television to promote the campaign. Careful attention to class schedules and materials were also important elements in the preparations. In urban areas, where women were generally free from working between 11 a.m. and 3 p.m., classes would be held during the day. In the villages, where people worked all day, classes would be held in the evening, beginning between 7 and 7:30 p.m. To encourage maximum participation, literacy classes were to be taught in both the local dialect (which was used by a majority of the population) and Hindi. Primers in both languages had been prepared. The strong tradition of purdah in the area presented special problems. Because cultural norms proscribed interaction between men and women, it was
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necessary to recruit women volunteers to teach the classes for women. This was not a simple matter, since these same cultural norms had kept the great majority of women illiterate, especially in the rural areas. This meant it was necessary to recruit volunteers from the urban areas and transport them to where they were needed. Perhaps more significant and difficult to address was the problem that the very idea of educating women posed a threat to cultural norms. For example, many husbands and in-laws thought that the proper role for women was to cook and keep house, not to “become District Commissioners,” a sentiment that we were to hear elsewhere. We were impressed by the organizers of the campaign. Their diligence, conscientious planning, and dedication to social activism were noteworthy. Nevertheless, considering the obstacles that were facing the campaign, e.g., cultural barriers, logistical problems, poverty, and a lack of women who were qualified to teach the classes, it was difficult to be confident of widespread success for the campaign.
Bhilwara Our visit to Bhilwara, whose rapid economic development has made it a center of the national textile industry, proved to be one of the most valuable and encouraging of all the site visits. Our first order of business, as it was in other places, was to meet the District Commissioner, who was eager to speak with us and very much wanted to express his views about literacy. At first, he had thought that making people literate was not necessarily the most important element of the campaign, that the literacy campaign should be thought of more broadly as adult education. Recently, however, he had become concerned when he found that many teachers were poorly trained and that students were not becoming fully literate. This had brought him to the conclusion that the most critical task facing the literacy campaign was to train teachers and to concentrate on imparting specific skills to students rather than devoting time to issues such as women’s health. Because research has shown that teachers’ skills and training have significant effects on the success of literacy programs (Comings, Shrestha & Smith, 1992), it would seem that the District Commissioner was correct. But, as we were to realize later in the day, as well as during visits to programs in Delhi, learning to read is only one element of education. After speaking with the District Commissioner, we met with a group of people who were active in the literacy campaign, among them a poet who had co-authored the primer that was used in Bhilwara. We also met a woman who proudly recounted an anecdote about how literacy can make it possible for individuals to change the conditions of their lives. She worked in one of the local textile mills where, every payday, workers are given a statement of their earnings.
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Before being paid, workers are required to sign the statement to verify that they were receiving the correct amount. Because this woman was illiterate and lacked numeracy skills, she could not determine whether or not she was being paid correctly, nor was she able to sign her name and was humiliated when she could only offer her thumbprint for the payroll records. Her embarrassment at being so ignorant kept her from asking for help. Rather than simply accepting her predicament, she began to attend the literacy classes when they started in Bhilwara. After only three months, she was able to sign her name and had mastered enough arithmetic to calculate her wages. Thus armed, she was finally able to determine that her employer was, indeed, under-paying her, and she demanded what was owed to her. Our next stop was at the District Women’s Development Authority (DWDA), a non-governmental organization that received funding from UNESCO. While the DWDA was separate from the literacy campaign, the two programs worked in tandem. When we arrived, two women were conducting a class on reproductive health. One instructor had several charts of female anatomy hung around her neck. The other used a pointer and the charts to illustrate what she was explaining. It was quite extraordinary. The students were a group of women, all of whom presumably had grown up and now lived under the system of purdah. Many probably had been married at an early age; most had likely already had one or more children. Yet, presumably for the first time in their lives, they were being offered the opportunity to understand pregnancy and menstruation. These two experiences both supported and refuted the District Commissioner’s belief that the literacy classes should focus narrowly on imparting specific skills. In the case of the woman who thought she was being cheated, it was clear that obtaining rudimentary levels of reading and arithmetic was necessary. But the reproductive health class at the DWDA was something else entirely. Just a few days before, the District Commissioner had told Mrs. Inda Chopra, the Director of DWDA, to concentrate on teaching her students how to read and write and not to bother with other topics. However, if she had taken that advice, the women who attended the classes she organized would have missed an opportunity to understand and begin to take control of an essential process in their lives. One of the most encouraging aspects of the literacy campaign in Bhilwara was its coordinator, Mr. Jagdish Purohit. Gracious throughout our visit, Mr. Purohit never gave the impression that he was showing us his accomplishments but, rather, those of the volunteers and students. Nor did he ever put himself in a position to demonstrate his authority. He sat on the floor with the students at the DWDA, and chatted easily and warmly with everyone. One moment best characterized him. Upon our arrival at a literacy class that evening, several children presented us with garlands. When a small girl tried to put one over Mr. Purohit’s head he laughed and gently declined the gift, saying that it was he who should be giving the garland to her. The significance of this only became apparent to me the next day.
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Chittorgarh The visit to Chittorgarh—where the literacy classes had begun only two weeks before—was the most disappointing of our trip.19 Our first stop was at a nonformal education class in a desperately poor community. Cattle and chickens roamed about on the dirt lanes. Flies were everywhere. People lived in hovels and used cow dung as the fuel to cook their meals. Classes were held everyday from 4–7 p.m. and were attended by about 40 children, all of whom were dirty and illclothed. Given the presence of a primary school in the area the reason for an evening class was not clear. Most likely, the children’s labor was needed during the day. The instructor was a young, married college student who was having a difficult time making ends meet on the pittance he received as wages for teaching the classes. The “classroom” was a patch of dirt behind a hut with a crude slate board and posters propped against a wall. The children sat on the ground and held small slates and pieces of chalk. The method of instruction was by rote. The instructor or one of the children would point to a letter or word and call it out. The class would then respond collectively by repeating what had been said. For our benefit, several boys and girls were called on to demonstrate their skill in writing the numbers from 1 to 20. The boys did this well, but when we gave them a few simple problems of arithmetic, we discovered they had been instructed only in addition and some of them were not even capable of that. The girls fared more poorly—none of them knew how to add and most could only write their names in a slow, halting fashion. A revealing incident occurred on our arrival. Some of the children, acknowledging our visit, tried to touch our feet, a gesture of deference to persons of higher castes. Unlike Mr. Purohit who had declined the garland of flowers, the officials of the literacy campaign in Chittorgarh readily accepted the display. This, in combination with the poor performance of the children, was disheartening. My discouragement deepened later that evening when we went to an “environment building” event that was being held in a large tent on the outskirts of the city. As members of the community arrived they sorted themselves according to gender: women sat on the ground on one side of the tent while men sat on the other side. Other social divisions were obvious, too. Local politicians and bureaucrats, officials of the literacy campaign, and teachers who were volunteering their skills all remained some distance from the audience while waiting for the District Commissioner to arrive and open the festivities. As we talked with people in this “elite” group it became apparent that the campaign had not been carefully 19
At the time I did not know that it was legal to grow opium in Chittorgarh. It is a question whether the drug trade was a factor in what appeared to be a lackluster literacy campaign, but it is certainly a possibility.
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planned, that literacy classes were going to use rote methods of instruction, and that little or no effort was being made to use the classes to broaden students’ understanding of the worlds in which they lived. The obvious gender and social barriers at the event were further indications that this literacy campaign had no intention to change the social order. When the Adult Education Officer interrupted a conversation I was having with a volunteer in order to introduce me to a local bureaucrat, I lost my patience with what seemed to be a program top-heavy with bureaucracy. Then, an hour and a half past the scheduled start, when the festivities had not commenced because the District Commissioner had not yet arrived, I decided I had seen enough and we returned to the Circuit House for dinner.
DELHI Although data are lacking, research suggests that integrating income generation programs with literacy classes is an effective strategy to improve the performance of students. Research also suggests that even if such programs do not substantially increase the effectiveness of literacy classes, they contribute to the enhancement of women’s self-esteem and social status (Abadzi, 1994). Just before leaving India in September 1996, and then again the following February, I had the opportunity to visit literacy programs in two communities of the Nangloi Jat Constituency in western Delhi that lend credence to these notions. The people who live in Jawalapuri Camp, the first community that we visited in Delhi, are migrants from all over India, but the great majority are from Rajasthan. The community came into existence in 1976 when the government gave the migrants permission to build homes on land that was then vacant. At the time of our visit the area consisted of small, two-story, airless concrete houses that faced onto narrow streets in which cattle and pigs wandered freely and garbage was strewn. The residents had, until recently, eked out their living by collecting discarded plastic bags and selling them in a nearby recycling market. The year before, a fire had destroyed the market and although it was soon re-established, the distance (15km) to its new site made recycling a less viable livelihood. A 1995 survey20 of 800 households in Jawalapuri Camp found, among persons between the ages of 6 and 35 years, that almost twice as many women as men were illiterate (Table 5).21 20
The information and statistics in the following discussion come from an unpublished report prepared and given to me by Mrs. Sharda Kumari, the coordinator of the literacy programs in the area. 21 This gender disparity was true of the area in general. According to the 1991 Census, among persons six years and above living in the Nangloi Jat Constituency, almost twice as many men (46,165) as women (24,960) were literate (Chand, 1993).
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At the time of our visit, 637 students (579 women and 58 men) were attending 60 literacy classes. When we spoke with women students, they echoed much of what we had heard in Himachal Pradesh and Rajasthan. They were attending the classes because they felt handicapped by their inability to read bus destinations or that when they went to market they could not figure correct change or how much they had spent. One woman spoke of how she was often cheated by shopkeepers. They now took greater interest in their children’s school work and, in return, school children had been helping their mothers and grandmothers learn to read. In all, becoming literate had given these women increased confidence in their abilities to carry out the routines of daily life. The coordinator of the literacy campaign in the Nangloi Jat Constituency, Mrs. Sharda Kumari, had explicitly integrated vocational education into the program. One literacy class was concentrating on producing small consumer items (e.g., decorated folders for holding pads of paper) that could be sold in local markets. Women in other classes were learning how to use sewing machines and to make clothing. One group of women and girls made jars of apple preserves which they were marketing locally. The quality of the literacy program in Nangloi Jat Constituency was most apparent when we visited a class for “street” children in the Veena Enclave. These children, because of poverty or circumstances at home, were not going to primary school. I was reminded of the children in the nonformal education class in Chittorgarh whose literacy and numeracy skills had been so poor. This time, however, when Amit and I administered simple arithmetic tests, these children—both boys and girls alike—happily solved all of them. Of course, such informal tests do not constitute rigorous evaluations of the respective programs, but the “results” certainly agreed with our impressions. In Chittorgarh, where social hierarchies were strictly maintained, strong community involvement appeared to be lacking, and the subject matter of the classes was narrow, poor children were not learning to read. In the Veena Enclave, where the literacy classes encompassed a broad range of subjects and the program received enthusiastic support from the community, even street children were learning to read and write.
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Despite the apparent success of the program, one serious flaw must be noted. Young school girls taught most of the literacy classes, and although they were a great source of pride to the community, the program’s dependence on them was problematic, too. Because research has identified teachers' training and skills as being critical to the success of literacy campaigns (Comings et al., 1992), one must wonder about the ultimate effectiveness of a program that depends on unskilled teachers, no matter how dedicated and impassioned they might be. Nevertheless, it was in Jawalapuri Camp that we heard the most eloquent testimony to the power of literacy to transform the lives of women. When we asked students in one class about the effects of learning to read, one woman commented that with literacy it was now possible to “organize for the future.” Another encapsulated a world into a simple statement. Before the literacy classes, she said, “Our lives were covered in darkness.”
LITERACY AND MENTAL HEALTH People strive to exercise control over events that affect their lives. By exerting influence in spheres over which they can command some control, they are better able to realize desired futures and to forestall undesired ones ... . Inability to exert influence over things that adversely affect one’s life breeds apprehension, apathy, or despair (Bandura, 1995, p. 1).
The effects of literacy on mental health have not been explored adequately— though the evidence is intriguing. Davar’s (1995) research demonstrated a positive association between education and mental health, especially for women. More tellingly, a 23-year study found that as women gained greater control over their lives—increased access to education, for example—their rates of depression decreased (Ullrich, 1988). I would also maintain that the literacy classes themselves have significant consequences beyond the acquisition of specific skills. By bringing women together in new social forms that provide them with information about and ideas from wider worlds, the classes were potential catalysts of social change. Finally, literacy campaigns do not simply offer opportunities to illiterate women. By participating in the campaigns as volunteer teachers, impoverished literate women and girls gained a sense of pride, self-worth, and purpose. The positive mental health effects of literacy were most obvious when women spoke of increased agency in their day-to-day lives. The ability to write a shopping list is a concrete example of having the capacity to “organize for the future.” Acquiring numeracy skills meant that women were not cheated in the markets or at work; nor were they humiliated at home by their need to rely on husbands or fathers to calculate every household expense and financial transaction. In Solan, one woman spoke about how she had been able to keep the family shop after her husband died because the literacy classes had given her the skills
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required to keep business accounts. Women in Shimla spoke of how much they enjoyed being able to follow recipes, learn knitting patterns from books, and read movie posters. In Delhi, women spoke of the confidence that came with literacy; that they were no longer afraid to venture out on their own and could do their own marketing. In Bair, they spoke of overcoming shyness. Everywhere, women told us of their new attention to television and news. The breakdown of purdah and gaining new rights and self-respect were attributed to literacy. Women in Shimla wanted to learn English because they saw it as the language of opportunity, as it was a prerequisite for employment by the state government or in the tourist industry. Women even associated literacy with the disappearance of child marriages in the village of Mashivar. In that same village we were told that the literacy campaign was “a war against ignorance.” I would maintain that many powerful effects of the literacy campaigns were the result of intangible aspects of the new social forms offered by the classes. In the context of purdah, gender discrimination, and a caste system that continues to exert a powerful influence, the very fact that impoverished women can gather together, learn, exchange knowledge, and organize economic activities may represent a significant social transformation. Not the least of these intangibles were the attitudes and practices of several of the organizers of the campaigns: Jagdish Purohit declining the garland of flowers; Veena Sandal and Indra Chopra choosing to sit on the floor with their students rather than setting themselves apart; the dedication of Shadra Kumari. These acts were neither revolutionary nor dramatic, but they did offer a view of how society might be organized if poverty, illiteracy, gender discrimination, and caste hierarchies were not so dominant. Knowledge that the world can be different is a first step toward change. The positive mental health aspects of the literacy classes were not confined to the students, but extended to the literate women and girls who taught the classes. As noted above, young girls taught many of the classes in Jawalapuri Camp and the Veena Enclave. While it may be true that they did not possess the skills required to teach effectively, their participation in the campaign must be considered of importance. In effect, by teaching the classes, these girls learned of their own worth and that they were capable of making contributions to society. As sources of pride to their community, they made it that much more difficult for women to accept rigid cultural norms about gender roles. For other girls, these young teachers provided examples of competency and independence. In other communities, volunteer teachers spoke of how leading the classes had made them more self-assured. Most memorable was a young woman in Matholi who told us that on completing the 10th standard in school she had nothing to do and would simply remain in her room. Her life changed with the initiation of the literacy campaign and when she began to teach. She also attended workshops on recycling plastic, hand looming, and making jute bags. In turn, she taught these skills to women in the literacy classes who now collect plastic bags and use them to make
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handicrafts for their own use. When I expressed an interest in seeing this work, she got up immediately and went outside. Moments later, she returned with three colorful mats made from recycled plastic, as well as a mat and a very handsome shoulder bag woven from jute. What was most striking, however, was the disjuncture between how this young woman appeared now—animated, beautifully dressed, and filled with pride about the work she was doing—and how I imagined she had been before she became a teacher—listless and alone in her room.
DISCUSSION Program evaluations must take place in two domains: the global, in which one considers the validity of using general methods to achieve a particular outcome, and the local, in which one considers the likelihood that following a particular strategy in one community or nation will achieve the desired goal. In the case of the work of the National Literacy Mission in Northern India evaluations of both domains present difficult questions and challenges.
The Global [W]e do not know what we are doing, why we are doing it, how well we are doing it or what the results will be if we do it well (Rogers, 1993, p. 172). There is now a vast literature that supports the premise that female education results in dramatic improvements in the overall health and social well-being of entire populations. While a discussion of the validity of those claims is beyond the scope of this chapter, it is almost impossible to oppose the notion that female education is valuable (Jeffery & Basu, 1996b) and that literacy is a skill that should be promoted globally22—whether it is in the form of primary schooling or adult education. Nevertheless, one cannot ignore reality: most efforts to eradicate illiteracy among adults in low-income countries have had disappointing results. High rates of dropout and failure to obtain and retain skills have made most programs notably ineffective (Abadzi, 1994). Primary education efforts have been plagued by similar problems (Jones, 1990). Even when programs are successful, minimal reading skills may not lead to functional literacy. Research in Kenya has shown that literacy acquired through primary or adult education is not enough to help individuals use agricultural chemicals (Stromquist, 1992) or medications (Eisemon, Ratzlaff & Patel, 1992) more effectively. Furthermore, different social and economic contexts require different levels of literacy skills for a person to be considered functionally literate (Wagner, 1995). For example, the skills required 22
To be fair, Pattanayak (1991) has maintained that literacy is “an instrument of oppression.”
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to function productively in an information-based economy will be quite different, both in kind and extent, from those required in agricultural or manufacturing economies. Leaving aside the question of the most effective strategy to eradicate illiteracy, the choice of international donors and national governments to give preference to primary rather than adult education is an unfortunate one (Jones, 1990), because it excludes generations of older people from the benefits that ensue from being literate. This is not acceptable, especially since we have evidence which will help in the development of successful adult literacy programs. Comings and colleagues (Comings et al., 1992) maintain that, although drop-out rates of 50% and above are common, careful attention to the selection, training, and supervision of teachers can lower the rates significantly. There is no doubt that individuallevel factors—lack of motivation and interest, for example—negatively influence the effectiveness of programs, but systemic problems pose even greater impediments. No amount of effort aimed at individuals will get them to learn to read if classroom conditions are poor, reading and writing materials are not available, and if teachers are poorly trained, regularly miss classes, and mistreat their students (Ghosh et al., 1994). As is often the case in social programs, poor outcomes more often reflect uninformed planning or the rigidity of providers rather than the inability of a target population to respond to opportunities (Cohen, Kleinman & Farmer, 1997). In view of this, nations and international donors would do well to re-examine the low priority that has been given to adult literacy programs in recent decades.
The Local To begin this consideration of the National Literacy Mission it is useful to review the report of the Expert Group which conducted a careful evaluation of adult literacy efforts in India (Ghosh et al., 1994). There is no question that the NLM has been far more ambitious and more successful in raising literacy rates in India than previous programs. Although the effectiveness of the mass campaign approach has been questioned in general (Wagner, 1990) and in China, specifically (Stites, 1995), the Expert Group thought that the strategy had proven effective in India, and that building campaigns on the organizing and teaching efforts of volunteers appeared to be working. One clear success for the NLM has been that women have been the majority of the participants in the literacy campaigns, representing 75–80% of all learners. Moreover, the Expert Group noted that women seem to attach pride and happiness about the acquisition of literacy. By and large, women see in the campaigns a space for themselves to interact with each other and to gradually bring about changes in social and, more particularly, gender equations (Ghosh et al., 1994, p. 18).
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The experiences I had during site visits support this conclusion, but one must be careful about assigning improvements in self-esteem and confidence among women solely to their acquisition of literacy. As suggested above, and by the Expert Group itself, the new social forms that the literacy campaigns offer to women may be the operative force promoting these changes. The Expert Group commented that literacy campaigns had brought about an increase in the demand for primary education for children, an outcome that mirrors findings in Tanzania (Mundy, 1993) and China (Stites, 1995). We found this to be the case, too. Again and again, women spoke of how they were taking a greater interest in the education of their children. It seems reasonable to assume that mothers’ increased interest in education will result in lower drop-out rates and higher levels of achievement for primary school students—a significant outcome if India ever expects to achieve universal literacy. Put another way, it is short-sighted to invest in primary education without assuring that parents recognize the importance of education and enable their children to attend school. The provision of adult education would seem to be an essential component in the creation of environments that are conducive to the education of children. Not everything in the report was positive, however. First, the Expert Group questioned the validity of the data generated by local projects and was troubled by the lack of a mechanism by which to check the “authenticity of information.” Problems with sampling methods, standards of measure, and inflation of positive statistics made the data difficult to assess,23 and the Expert Group chided the NLM for its lack of on-going monitoring and evaluation. Second, local projects were not generating qualitative reports on the effects of the campaigns. The Expert group found this troubling because many of the expected effects of literacy—improvement in mental health and social relationships, for example—are not to be found in statistics about the number of individuals who have achieved some modicum of literacy; nor do such statistics reveal whether neo-literates are applying their new skills socially, culturally, and economically. To be fair, this is a problem in assessing the effects of literacy campaigns world-wide. On this point, Wagner (1995) notes the need for research on the consequences of literacy—not just cross-sectional studies that reveal associations. The Expert Group went even further and recommended that qualitative research on the process of becoming literate and the consequences of having attained those skills must become an essential feature of future evaluations. Third, the Expert Group was troubled by signs that the campaign approach was slowly being replaced by a “bureaucratic apparatus.” This concern was born 23
These problems are not unique to the NLM. Official statistics on education in India are often of questionable worth. For example, school enrollment data are inflated. In all states but Haryana and Kerala, the proportion of eligible boys who are enrolled in primary schools is above 100% (Drèze & Sen, 1995, p. 113).
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out during several of our site visits. In Shimla, Chittorgarh, and, to a lesser extent in Solan, the fervor of literacy work, of offering people the opportunity to learn skills that might transform their lives, had been replaced almost entirely by bureaucratic enterprises that saw the literacy campaigns as little more than sources of jobs, privileges, and prestige. This is a significant problem in that the campaign model employed by the NLM depends for its success on environments that are imbued with a collective commitment to social activism—as was the case in the Ernakulum district of Kerala where the literacy campaign model was first developed (Jeffery, 1987; Ramachandran, 1997). It is difficult to imagine that entrenched bureaucracies will promote such activities. Finally, the Expert Group stated that for the NLM to be considered a success it must tackle the problem of the Hindi-speaking states, where the problem of illiteracy is greatest. During the period 1990–1993, the NLM was criticized because it launched campaigns primarily in those regions of India that already had relatively high rates of literacy while neglecting the four major Hindi-speaking states (Bihar, Madhya Pradesh, Rajasthan, and Uttar Pradesh), where rates were terribly low. This began to change in 1993 when considerably more literacy projects were sanctioned in the Hindi States, and, by 2001, the literacy rates in all of the Hindi States, and in Rajasthan in particular, had risen sharply (Census of India 2001c). However, the statistics published to date do not indicate whether this improvement is due to greater proportions of children completing primary school or the eradication of illiteracy among adults. Indeed, given the poor reliability of education data from India, one cannot be certain whether these data indicate a true rise in literacy or inflated counts of the number of children who have successfully completed primary school. From what we observed in Rajasthan, the possible outcomes of local adult literacy programs ranged from spectacular success to dismal failure. The dedication and careful planning of NLM officials and volunteers in Dausa and Bhilwara may have been able to overcome the obstacles of gender discrimination and lack of trained teachers, although the lack of interest by district officials in Chittorgarh augured poorly for that program. In either event, more detailed data are required to determine the extent to which adult literacy programs contributed to the dramatic rise in literacy among the people of Rajasthan. Most critically, the Expert Group recognized that the ultimate success of India’s efforts to achieve universal literacy would rest on whether there was sufficient political commitment to literacy and continuing education programs. The importance of this cannot be underestimated. Because adult literacy campaigns around the world have generally failed, UNESCO has joined an international trend to an overwhelming emphasis on primary education, and the World Bank has virtually stopped approving loans to adult education programs (Abadzi, 1994; Jones, 1990; Rogers, 1993). That means adult literacy programs will be forced to depend on funding from national or private sources. Since India itself has a poor
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record in sustaining education efforts of all kinds, one must be pessimistic about the long-term ability of the NLM to function effectively.
CONCLUSIONS Surely, there were flaws in the literacy programs for women that we visited. Bureaucratic struggles and inattention to the importance of continuing education were significant problems in Shimla. The program in Chittorgarh appeared to be heading for inevitable failure since it was making little attempt to introduce effective teaching methods or to address the problems posed by traditional social hierarchies and gender inequities. Even where programs seemed to be effective, in Delhi and Bhilwara for example, the lack of skilled teachers raised concerns about the ability of the programs to impart high levels of literacy to the students. Yet, to concentrate exclusively on those flaws would miss a more basic lesson. In view of the status of women in India, the acquisition of literacy is not the only— and may not even be the primary—outcome on which the programs should be evaluated. A consideration of Stites’ (1995) ethnographic research on a literacy program for women in rural China is useful in this regard. In brief, Stites found little cause to expect that the mass campaign approach would be successful in either eradicating illiteracy or widening women’s employment opportunities. Perhaps most tellingly—and of particular relevance to the situation in India— Stites concluded that the greatest failure of the literacy campaign was its inability to free women from the restrictive gender roles found in Chinese rural communities and families: [Women] emerged from the experience of the anti-illiteracy class better able to fulfill the roles and statuses already allotted to them but not necessarily capable of acting to transform those roles and statuses. In some respects they may have been happier and more capable than their illiterate sisters but they were no more powerful and ultimately the prospects for them to retain and expand the rudimentary reading and writing skills they had acquired seemed poor (Stites, 1995, p. 396).
However, this view overlooks an essential point. That women who participated in the literacy classes were happier and more capable than their illiterate sisters is not inconsequential either at the level of the individual or the community. In a similar vein, Patkar doubts the ability of literacy campaigns to bring about fundamental changes in the economic status of Indian women: Able to sign on the dotted line of labor contracts but not to challenge and question the terms of the contract itself, the female neo-literate soon discovers that literacy and justice are two disparate, incompatible issues (Patkar, 1995, p. 407).
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While that might be true, it does not negate the obvious sense of pride and self-agency expressed by the woman in Bhilwara who told us about her struggle to become literate so that she could check the accuracy of her pay and sign her name. Her act of questioning authority must not be dismissed because it did not, immediately, raise broad social and economic issues. One must think that her ability to question the accuracy of her paycheck represented only a first step toward being able to ask more fundamental questions about her pay scale and the conditions under which she worked. Stites and Patkar are correct to point out that the acquisition of literacy skills is not a “magic bullet” that will, by itself, make for fundamental social changes in the lives of individuals. The experience of literacy classes which introduce new social forms and expose women to information from wider worlds may provide more of an opportunity for change, but for literacy programs to be truly effective in improving health and social well-being, they must occur in the context of substantial social reform (Jeffery & Basu, 1996b). It would be naive to think that literacy programs alone are enough to overcome gender inequities and raise the health and social well-being of Indian women (Arnove & Graff, 1987). Even a cursory examination of data from Rajasthan and Himachal Pradesh demonstrates that low rates of literacy in the former and the relatively high rates of literacy in the latter do not occur in isolation from other factors. A host of social indicators, including infant mortality, poverty, fertility, female participation in the labor force, and child vaccinations, show that the women of Himachal Pradesh enjoy higher levels of well-being than those of Rajasthan. Even female literacy rates among the Scheduled Tribes and Castes of Himachal Pradesh were many times higher than those found in Rajasthan (Table 4). But have differential rates of female literacy played a part in the differences between Himachal Pradesh and Rajasthan? Probably, but only as one factor among many. Evidence from Himachal Pradesh demonstrates that many factors have contributed to improvements in the status of women. In addition to high levels of female participation in the labor force and the commitment by the state government to education, Himachal Pradesh is distinguished by a number of social and cultural elements which have had an influence. First, marriage practices in Himachal Pradesh are much less rigid than in Rajasthan. Until recently, bride-price was probably more common than dowry; even now bride-price remains common and dowry practices are not as strict as elsewhere in Northern India. Nor are women required to marry better-educated men. This means that well-educated women have better prospects of marriage than is the case in other parts of India. Finally, since patrilocality is not strong in Himachal Pradesh and daughters remain close to their natal families, there is greater concern for the long-term well-being of girls (Drèze, 1999). Assuming that this is an accurate view of Himachal Pradesh, the decrease in its FMR in the decade ending in 2001 is particularly troubling and perplexing. If its sociocultural and socioeconomic environments are supportive of women and
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girls, if literacy and education are transformative forces, why did this take place in a state that has invested heavily in education for much of the past 50 years? Why, in particular, did the families of Himachal Pradesh resort to sex-selective abortions to such an extent that the FMR of persons aged 0–6 years dropped from 951 (in 1991) to 897 (in 2001) (Dugger, 2001a; D. Swadi, personal communication), a rate that is even lower than what is found in Rajasthan (Census of India 2001b)? Answering these questions requires detailed information that is not available at present. Nevertheless, the apparently contradictory phenomena of increasing rates of both female literacy and sex-selective abortion in Himachal Pradesh strongly indicates that investment in education (of all types) is not sufficient to significantly improve social health and well-being for both genders and across all social groups. To be truly effective, adult and primary education must not be equated with the acquisition of rudimentary skills in literacy and numeracy. It must encompass more, providing both men and women with access to the knowledge and resources that have the potential to give them the ability to improve their lives substantively. Even the finest adult education programs will have minimal effects if social, cultural, economic, and legal environments promote severe gender inequities. It is necessary to keep these cautions in mind when considering the latest data from Rajasthan. The doubling of the female literacy rate—if real—between 1991 and 2001 is truly spectacular and must be regarded as a major achievement. The increase from 910 to 922 in the FMR is also a welcome, and unexpected, accomplishment. But just as the positive developments in health and social wellbeing in Himachal Pradesh must be considered in broader contexts, so, too, must the developments in Rajasthan be considered more closely. First, there can be no doubt that the rising FMR is an accurate measure of improving health conditions for women and girls. However, the increase would have been even greater if there had not been a fall in the FMR for children 0–6 years from 916 (in 1991) to 909 (in 2001) (Census of India 2001b). Second, it is imperative that careful measurement of skills determine whether the increase in literacy rates is real or whether it is an artifact of self-report or reliance on school attendance data. Third, following the caution of the Expert Group (Ghosh et al., 1994) and Wagner (1995), it is important to examine the consequences of literacy. That is, has the great rise in rates of literacy enhanced the lives of women in Rajasthan? From the evidence of our site visits, the outcomes of adult literacy programs may extend far beyond making women literate. Classes have the potential to introduce women to information and concepts that were unavailable to them previously. The new social forms that the literacy classes represent—women venturing beyond their traditionally circumscribed worlds—can make a fundamental contribution to both individual and collective changes. In Rajasthan—where the status of women is especially dire—attending the literacy classes is, by itself, a
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potentially transforming act. In the final analysis, we must believe the woman who said, “Our lives were covered in darkness” before the literacy classes. It hardly matters whether the darkness was lifted by learning to read or by taking part in new social forms. The lesson is that we must redefine adult literacy campaigns as adult education campaigns that have as their goal the broadening of opportunities for people who have been kept isolated and powerless by poverty, gender discrimination, and illiteracy.
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Cleland, J. G. & van Ginneken, J. K. (1988). Maternal education and child survival in developing countries: The search for pathways of influence. Social Science & Medicine, 27, 1357–1368. Coale, A. J. (1991). Excess female mortality and the balance of the sexes in the population. Population and Development Review, 17, 517–523. Cohen, A. (2000). Excess female mortality: The case of Himachal Pradesh. American Journal of Public Health, 90, 1369–1371. Cohen, A., Kleinman, A., & Fanner, P. (1997). Health-behavior interventions: With whom? Health Transition Review, 7, 81–85. Comings, J. P., Shrestha, C. K., & Smith, C. (1992). A secondary analysis of a Nepalese national literacy program. Comparative Education Review, 36(2), 212–226. Das Gupta, M. (1987). Selective discrimination against female children in rural Punjab, India. Population and Development Review, 13(1), 77–100. Das Gupta, M. (1997). Methodology and main findings on child survival of the Khanna restudy, 1984–1988. In M. Das Gupta, P. Aaby, M. Garenne & G. Pison (Eds.), Prospective community studies in developing countries (pp. 81–100). Oxford: Clarendon Press. Das Gupta, M. (1998). “Missing girls” in China, South Korea and India: Causes and policy implications (Working Paper Series No. 98.03). Cambridge, MA: Harvard Center for Population and Development Studies, Harvard School of Public Health. Davar, B. V. (1995). Mental illness among Indian women. Economic and Political Weekly, 30, 2879–2886. Davar, B. V. (1999). Mental health of Indian women: A feminist agenda. New Delhi: Sage Publications. Department of Education (1988). National Literacy Mission. New Delhi: Ministry of Human Resources Development, Government of India. Department of Education (1993). Education for all: The Indian scene, widening horizons. Delhi: Ministry of Human Resource Development, Government of India. Desjarlais, R., Eisenberg, L., Good, B., & Kleinman, A. (1995). World mental health: Problems and priorities in low-income countries. New York: Oxford University Press. Directorate of Adult Education (1996). Literacy: Facts at a glance. New Delhi: Ministry of Human Resource Development, Government of India. Doyle, R. (1997, May). Female illiteracy worldwide. Scientific American, 20. Drèze, J. (1999). A surprising exception: Himachal’s success in promoting female education. Manushi, 112, 12–17. Drèze, J. & Sen, A. (1995). India: Economic development and social opportunity. Delhi: Oxford University Press. Dugger, C. W. (2001a, 22 April). Abortion in India is tipping scales sharply against girls. New York Times.. Dugger, C. W. (2001b, 6 May). Modern Asia’s anomaly: The girls who don’t get born. New York Times. Eisemon, T. O., Ratzlaff, J., & Patel, V. L. (1992). Reading instructions for using commercial medicines. Annals of the American Academy of Political & Social Science, 502, 76–90. Ghosh, A., Mazumdar, V., Beteille, A., Ananthamurthy, U. R., Kansal, S. M., & Vanaik, A. (1994). Evaluation of literacy campaign in India: Report of expert group. New Delhi: National Literacy Mission, Directorate of Adult Education, Ministry of Human Resource Development, Department of Education, Government of India. Goodburn, E., Ebrahim, G. J., & Senapari, S. (1990). Strategies educated mothers use to ensure the health of their children. Journal of Tropical Pediatrics, 36, 235–239. Guldan, G. S., Zeitlin, M. F., Beiser, A. S., Super, C. M., Gershoff, S. N., & Datta, S. (1993). Maternal education and child feeding practices in rural Bangladesh. Social Science & Medicine, 36, 925–935. Hammad, A. E. B. & Mulholland, C. (1992). Functional literacy, health, and quality of life. Annals of the American Academy of Political & Social Science, 520, 103–120.
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Heise, L. L., Raikes, A., Watts, C. H., & Zwi, A. B. (1994). Violence against women: A neglected public health issue in less developed countries. Social Science & Medicine, 39, 1165–1179. Hobcraft, J. N., McDonald, J. W., & Rutstein, S. O. (1984). Socio-economic factors in infant and child mortality: A cross-national comparison. Population Studies, 38, 193–223. Hobcraft, J. N., McDonald, J. W., & Rutstein, S. O. (1985). Demographic determinants of infant and early child mortality: A comparative analysis. Population Studies, 39, 363–385. Jain, A. K. (1985). Determinants of regional variations in infant mortality in rural India. Population Studies, 39, 407–424. Jeffery, R. (1987). Governments and culture: How women made Kerala literate. Pacific Affairs, 60, 447–472. Jeffery, R. & Basu, A. M. (1996a). Girls’ schooling, women’s autonomy and fertility change in South Asia. New Delhi: Sage. Jeffery, R. & Basu, A. M. (1996b). Schooling as contraception? In R. Jeffery & A. M. Basu (Eds.), Girls’ schooling, women’s autonomy and fertility change in South Asia (pp. 15–47). New Delhi: Sage. Joel, L. A. (1994). Teach a woman, educate the world. American Journal of Nursing, 94(7), 7. Jones, P. W. (1990). UNESCO and the politics of global literacy. Comparative Education Review, 34(1), 41–60. Joshi, H. P. (1993), Health status of women in India. In A. Kumar (Ed.), Women in contemporary Indian society (Vol. 1, pp. 22–32). New Delhi: Anmol Publications. King, E. M. & Hill, M. A. (1993). Women’s education in developing countries: An overview. In E. M. King & M. A. Hill (Eds.), Women’s education in developing countries: Barriers, benefits, and policies (pp. 1–50). Baltimore: Johns Hopkins University Press. LeVine, R. A., LeVine, S. E., Richman, A., Uribe, F. M. T., Correa, C. S., & Miller, P. M. (1991). Women’s schooling and child care in the demographic transition: A Mexican case study. Population and Development Review, 17, 459–496. Lind, A. & Johnston, A. (1986). Education Division Documents, No. 32. Stockholm: SIDA. Mayer, P. (1999). India’s falling sex ratios. Population and Development Review, 25, 323–343. Mundy, K. (1993). Toward a critical analysis of literacy in southern Africa. Comparative Education Review, 37(4), 389–411. Murthi, M., Guio, A.-C., & Drèze, J. (1997). Mortality, fertility and gender bias in India: A districtlevel analysis. In J. Drèze & A. Sen (Eds.), Indian development: Selected regional perspectives (pp. 203–356). Delhi: Oxford University Press. Nandi, D. N., Banerjee, G., Mukherjee, S., Ghosh, A., Nandi, P. S., & Nandi, S. (2000). Psychiatric morbidity of a rural Indian community: Changes over a 20-year interval. British Journal of Psychiatry, 176, 351–356. National Literacy Mission. (1996). Towards a literate India. New Delhi: Ministry of Human Resource Development, Government of India. Papanek, H. (1982). Purdah: Separate worlds and symbolic shelter. In H. Papanek & Minault. Gail (Eds.), Separate worlds: Studies of purdah in South Asia (pp. 3–53). Columbia, MO: South Asia Books. Patel, V., Pereira, J., Coutinho, L., & Fernandes, R. (1998). Poverty, psychological disorder and disability in primary care attenders in Goa, India. British Journal of Psychiatry, 172, 533–536. Patkar, A. (1995). Socio-economic status and female literacy in India. International Journal of Educational Development, 15, 401–409. Pattanayak, D. P. (1991). Literacy: An instrument of oppression. In D. R. Olson & N. Torrance (Eds.), Literacy and morality (pp. 105–108). Cambridge: Cambridge University Press. Querubin, M. P. & Mantala, M. J. (1995). Women’s Health Series. Vol. 3: Maternal education and child health in the Western Pacific Region. Manila: World Health Organization, Regional Office for the Western Pacific. Raghavan, K. S., Murthy, R. S., & Lakshminarayana, R. (1995). Symposium on women and mental health: Report and recommendations. Bangalore: NIMHANS.
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Wagner, D. A. (1996). Using social science for literacy work in developing countries. In S. C. Carr, J. F. Schumaker & et al. (Eds.), Psychology and the developing world (pp. 81–89). Westport, CT: Praeger. Winchester, I. (1990). The standard picture of literacy and its critics. Comparative Education Review, 34(1), 21–40.
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Chapter
6
The Risk of Freedom Mental Health Services in Trieste ALEX COHEN AND BENEDETTO SARACENO
In the late 1970s, inspired by the theoretical writings, clinical practices, administrative strategies, and political activities of Franco Basaglia and his colleagues in Psichiatria Democratica, Italy undertook the most radical reformation of psychiatric care ever seen in the western world (Mosher, 1982). Rather than following the negative example of the United States—where patients had been discharged from psychiatric facilities without sufficient development of alternatives and support systems (Bassuk & Lamb, 1986; Jencks, 1994; Lamb, 1984; 1998)—the goal of the reforms in Italy went beyond a notion of dehospitalization and attempted not only to establish comprehensive systems of community-based care, but to bring about a transformation in the nature of care and the concept of madness (Barbato, 1998; Dell’Acqua, 1995; Dell’Acqua & Mezzina, 1988; Rotelli, 1988; Saraceno & Tognoni, 1989). In this chapter we will review the background to the reform movement in Italy and how the reforms have been implemented nationally, and then offer a detailed account of the reforms in Trieste, the province in which Basaglia had the opportunity to put his beliefs into practice during the years 1971–1980. We will conclude with a discussion of the lessons that Trieste offers to the development of effective and sustainable mental health systems in low-income countries.
MENTAL HEALTH LAW IN ITALY Historically, care of mentally ill persons in the Italian Peninsula was assumed by the Catholic Church. With few exceptions, conditions in these institutions were poor and their primary function was the social control of the homeless and the 191
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poor. Appeals to improve the care of mentally ill persons began in the mid-19th Century. When Italy was unified in 1861, the need for national legislation concerning the institutional care of mentally ill persons became increasingly obvious— especially after 1875 when the number of patients in mental hospitals began to increase dramatically (Bollini, Reich & Muscettola, 1988; Burti & Benson, 1996; de Girolamo, 1989) as “alienists” in Italy became convinced that institutional care represented the only effective treatment for persons with severe mental illness (Canosa, 1979). Legislation was not enacted, however, until 1904 when the Italian Parliament passed Law No. 36, “Dispositions on the mental hospitals and the mentally deranged.” Unfortunately, its primary function was not the improvement of conditions in the hospitals, but rather the control of socially disruptive behavior. Under the terms of the law almost anyone could request a person’s commitment to a psychiatric hospital, and admission on police authority was the most common method by which individuals were committed.1 Once committed, a patient was placed under observation for 30 days to determine the severity of his or her disorder. If a determination was made that the patient was dangerous—to him/herself or others—the court would issue an order of permanent hospitalization that also rescinded most of the patient’s legal and civil rights and placed his or her name on a public list of persons with criminal records. In the case of less severe disorders, the patient would be transferred to a neurological ward in a general hospital and then, in some regions of the country, to private nursing homes (Massignan, 1984; Romanucci-Ross, 1996). In 1909, an attempt was made to ensure that this legislation was not abused and that mental hospitals maintained humane and sanitary conditions. These regulations were all but ignored and the provisions of Law No. 36 remained in force, without amendment, until 1968 when voluntary admissions became possible (Burti & Benson, 1996; Maj, 1985).
FRANCO BASAGLIA AND PSICHIATRIA DEMOCRATICA Franco Basaglia began his career in psychiatry in 1948. His first appointment was as a research scientist at the neuropsychiatric clinic at the University of Padua (Scheper-Hughes & Lovell, 1986). In reaction to the rigid biomedical approach of Kraepelin, Basaglia’s early interests and theoretical orientation were in phenomenology and existentialism—the work of Schneider and Sartre, also that of Jaspers, Strauss, Binswanger, Frankel, and Minkowski (Crepet & Pirella, 1985). In 1961, after almost a decade of clinical experience and having never been in an asylum, Basaglia left academia to direct the psychiatric hospital in Gorizia (F. O. Basaglia, 1987). At the time, psychiatric care of severely mentally ill persons 1
Voluntary commitment was impossible.
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in Italy took place mostly in large, out-dated, crowded, poorly staffed hospitals and private clinics, institutions which were, almost without exception, sources of “misery and neglect” (Bollini et al., 1988, p. 1328; Barbato, 1998; Cazzullo, Comazzi, Guaraldi, Rigatelli & Verdecchiaa, 1984; de Girolamo, 1989). Institutional care depended on locked wards, various methods of restraints, ice packs, and physical abuse (Scheper-Hughes & Lovell, 1986); the treatments offered were ECT, insulin coma, and surgical interventions (Crepet & Pirella, 1985). On first entering the mental hospital Basaglia was struck by a terrible odor—an odor redolent of death and defecation. It was not unlike the fetid odor of the prison cell where he had experienced his first institutional encounter when, as a medical student active in the Italian resistance, he was arrested and held prisoner under the German occupation (Scheper-Hughes & Lovell, 1986, p. 160).
This experience made him determined to change the reality of the psychiatric institution. Initially, Basaglia turned to Maxwell Jones’ concept of the therapeutic community as a guide to providing humane care. Within a few years, however, he rejected the approach because he found that it did not help patients leave the hospital. Disillusioned, he kept asking both patients and staff, What is wrong here? What is the problem? (Mosher, 1982, p. 200). With his rejection of the therapeutic community, Basaglia also turned away from phenomenology because it did not consider the political and social dimensions of the psychiatric institution (Paparo & Bacigalupi, 1985). He became convinced that the institution itself— “its authoritarianism, hierarchy, inflexibility, and medicalization of social problems” (Mosher, 1982, p. 200)—was the problem. Three years after arriving at Gorizia, Basaglia presented a paper at a conference in London in which he outlined what was to become the foundation of his work. The institution of the mental hospital, he argued, was a destructive influence on the lives of patients. It imposed its values and rules, and “segregated and annihilated” patients, rather than offering care and protection. Psychiatrists, he maintained, were not so much healing physicians but “delegate[s] appointed by society to contain and control the excess of illness.” Psychiatry, he asserted, needed to reject the objectification of patients and accept “their right to a human life.” Even an open institution was dangerous if it continued to function as “a closed world without relationships to the outside.” The destruction of the asylum, he concluded, was “urgently needed” (F. O. Basaglia, 1987, p. xiii). With that, Basaglia and his coworkers set out to dismantle the institution at Gorizia. During the period 1963–1968, the use of mechanical restraints, ECT, and lobotomies were banned. Community-based social services and residential programs were developed. Staff no longer wore uniforms and patients were called “users.” The hospital held festivals on its grounds and invited townspeople
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to attend. By 1968, only 300 patients remained hospitalized—down from 800 at the time of Basaglia’s arrival (Mosher, 1982). Eventually, Basaglia came to believe that it was not the psychiatric institution that was in need of change, it was the institution of psychiatry that required transformation. Having failed to identify the biological impairments that were responsible for mental disorders, the science of psychiatry had resigned itself to the task of defining and categorizing conditions and then placing patients into institutions whose exclusive function was custodial. Psychiatry, he wrote, needed to be “negated,” that is, “turned upside down,” “called into question,” and “thrown into crisis”(F. Basaglia, 1987, p. 63). The first step was to restore freedom to patients, freedom that had been taken from them by a perspective that ignored or discounted basic human needs and offered biological treatments. Thus, patients were restrained—physically and spiritually—and disconnected from their lifehistories, their social environments, and, perhaps, even from themselves (F. Basaglia, 1985; 1988). The most destructive practices of the institution included what Basaglia and his colleagues called emargination and chronificatione. The former referred to “the social process by which mental patients were isolated and segregated from society” (Mollica, 1985a, p. 29). Stigma, involuntary commitment, lack of community-based services, and loss of civil and human rights all contributed to the isolation of mentally ill persons from society. Emargination left them with little power to determine their own lives or the care which they required. Chronificatione, or “the second disease,” was the result of neglect and mistreatment in the institution. The Italian reformers maintained that many of the behaviors displayed by patients were the result of the conditions of life in the asylum. Therefore, confident that they could treat the “second disease” more effectively than the “primary disease,” chronificatione became their main concern and they stressed that all reforms and therapeutic interventions must have as their goal “the social reintegration of the mentally ill” (Mollica, 1985a, p. 31). One must not, however, mistake Basaglia and his colleagues as adherents of the antipsychiatry movement then active in Europe and North America. Instead, they were anti-institutional psychiatrists who believed that a diagnosis of severe mental illness did not “justify absurd mistreatment, social exclusion, and segregation in asylums” (Carrino, 1985, p. 111). Moreover, they believed that medical intervention should constitute only one component of an overall approach to mental illness that must also include psychological, relational, and social interventions: A person suffering from mental illness has no need for a hospital bed; rather, the need is for a protected place where that person can reestablish an equilibrium between himself (or herself) and the world, secure from all repression and violence. The world of relations, personal history, and the history of the community or groups of which the person is a part remains one of the poles of that person’s predicament; it cannot be split asunder by internment
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in an asylum without the risk of aggravating the rupture between the person and reality (F. O. Basaglia, 1985, pp. 10–11).
Following this perspective, many Italian psychiatrists in community programs do not limit themselves to treating a “disease,” but also consider the condition of the patient within a framework that includes his or her social realities. Everything within this framework becomes the subject of possible therapeutic intervention (Mosher, 1983). This orientation is so different from that followed by traditional schools of psychiatry that some observers have assumed, mistakenly, that Basaglia and his colleagues either eschewed the notion of therapy altogether or were badly trained (Jones & Poletti, 1986a,b).
THE DEBATE OVER ITALIAN PSYCHIATRIC REFORM Law 180 Influenced by the writing of Antonio Gramsci, Basaglia considered himself to be an intellecttuale organico; that is, one who understood the suffering of marginal populations and was committed to the transformation of the social values and institutions that oppressed them (Mollica, 1985a). For that reason, Basaglia and his colleagues did not confine their activities to the reform of clinical practices but turned, as well, to political activism. In 1974, Psichiatria Democratica was founded, the national organization that lead the political campaign to radically reform Italy’s mental health system. Four years later, the Italian Parliament passed Public Law No. 180, “Voluntary and compulsory medical examinations and treatment.” In brief, the law relegated the mental hospital to a rapidly disappearing role in Italy’s mental health system, stipulating that community-based services would become the cornerstone of care and treatment of mentally ill individuals. The provisions of the law were: 1) psychiatric care and treatment were to be provided on a voluntary rather than compulsory basis, except in emergencies;2 2) public mental hospitals were to be phased out by prohibiting all new admissions and, after 1980, all readmissions; 3) there would be no construction of new facilities; 4) care and treatment were to be assumed by community mental health centers that would provide a full range of services; 5) all future psychiatric hospitalizations would take place in special wards that were to be established in general hospitals; and, 6) psychiatric services would be integrated into the National Health System (Burti & Benson, 1996; Fioritti et al., 1997; Maj, 1985). With this law, Italy became the only country in the world to adopt community
2
Even in emergencies, compulsory admissions were limited to 7 days, and could be extended only at the request of local judicial authority (Fioritti, Lo Russo & Melega, 1997).
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psychiatry as the centerpiece of psychiatric care and to close large mental hospitals (Mosher, 1983). Although Law 180 required general hospitals to provide a minimum number of beds for acute patients, a major weakness was that it did not specify standards for community clinics, general hospital psychiatric wards, levels of services, evaluation, or accountability (Fioritti et al., 1997; Lovell, 1986). Also problematic was the law’s lack of specificity in designating how the reforms would be implemented regionally (Bollini et al., 1988). The establishment of community-based care was left to the regional governments with the result, generally, that local programs did not receive adequate resources (Paparo & Bacigalupi, 1985). Additionally, significant regional variations in cultural, political, and socioeconomic conditions made for inconsistent implementation of the reforms. Many experts noted the differences in the provision of services between Northern and Southern Italy. For example, deinstitutionalization proceeded more slowly in the South, where both the development of community services and increases in psychiatric beds in general hospitals lagged behind efforts in the North (Burti & Benson, 1996; Frisanco, 1989). In recent years, the Italian Ministry of Health has attempted to address the heterogeneous application of Law 180. In 1999, after a careful and time consuming consultation with mental health professionals from different Italian regions, and with representatives of many family associations, the Italian Ministry of Health produced, “Progetto Obiettivo Tutela della Salute Mentale.” In brief, this document serves as a National Mental Health Plan. The principles set forth by Law 180 are now framed within a detailed and comprehensive model of care. The Mental Health Departments of Italy, which are responsible for psychiatric care within given catchment areas, are mandated to provide the following services: A community mental health center (open 12 hours per day, six days per week) which is responsible for all the activities of the Department. A psychiatric ward in the general hospital (one bed per 10,000 population, but no more than 15 beds in each ward). A Day Hospital. A rehabilitation center (open eight hours per day, six days per week). A residential Facility (protected apartments and/or half way houses). The new National Plan provides general guidelines for appropriate care and indicators for the evaluation of the activities. In considering the reforms, it is important to understand that, although the passage of Law 180 in 1978 was a significant legal step, it merely formalized the de facto process of deinstitutionalization and the establishment of communitybased services that were underway already (de Girolamo, 1989). The number of
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patients in mental hospitals in Italy had peaked at 91,868 in 1963 and, when Law 180 was enacted in 1978, the number of hospitalized psychiatric patients had already fallen to 78,538. The decline then accelerated over the next two decades and by 1998 only 7,704 patients remained in mental hospitals (de Girolamo & Cozza, 2000). The movement toward comprehensive community-based services had also been set into motion prior to Law 180, particularly where Basaglia and his colleagues were able to initiate the principles of Psichiatria Democratica. A nation-wide survey in 1985 found that, although two-thirds of community psychiatric services had opened in response to Law 180, the great majority of the best services had been established prior to 1978 (Frisanco, 1989). As we will see in Trieste, legal and administrative reforms always followed changes in practice.
Have the Reforms been Successful? In a reflection of professional orientations, political biases, and disparate experiences of the reforms in the various regions of Italy, an acrimonious debate3 has taken place about the relative merits of the “Italian Experience.” The potential value of this debate has been limited because of the general lack of empirical evidence by which to appraise the changes in psychiatric care. Law 180 did not establish an information system to collect data and Italy does not have strong traditions in psychiatric epidemiology or mental health services research (F. O. Basaglia, 1989; Bollini & Mollica, 1989; Mangen, 1989; Morosini & Veltro, 1989). Evidence is not entirely lacking, however. The only aspect of the reforms on which everyone agrees is that, at least until recently, there were significant regional differences in the provisions of services.4 The CENSIS Survey of psychiatric services found, as of the end 1984, that only 32% of Italy’s 674 Community Mental Health Centers (CMHCs) were providing adequate care, another 23% had “potentially efficient services,” and only 13.8% were determined to be providing excellent care (Frisanco, 1989). The districts with superior services were, predominantly, in the North and had been established before the enactment of Law 180. In contrast, services in the South were generally
3
See F. Basaglia, 1985; 1987; F. O. Basaglia, 1988; 1989; Benaim, 1983; Carrino, 1985; de Girolamo, 1985; Jones & Poletti, 1984; 1985a; 1986a; Jones, Wilkinson & Craig, 1991; Kemali, Perris, Maj, Amati & Vacca, 1985; Lovell, 1985; Lovell, 1986; Massignan, 1984; Minard, 1985; Mollica, 1985a,b; Morosini & Veltro, 1989; Mosher, 1982; Mosher, 1983; Palermo, 1991; Papeschi, 1985; Ramon, 1985; Romanucci-Ross, 1996; Scheper-Hughes & Lovell, 1986; Tansella, 1985; Tobino, 1985. 4 See Barbato, 1998; Barbato, Terzian, Saraceno, Montero Barquero & Tognoni, 1992; Barbato, Terzian, Saraceno, De Luca & Tognoni, 1992; Bollini & Mollica, 1989; Bollini et al., 1988; Burti & Benson, 1996; Calabrese, Micciolo & Tansella, 1990; Crepet, 1990; de Girolamo, 1989; Kemali et al., 1985; Lovell, 1986; Marino et al., 1996; Massignan, 1984; Tansella, DeSalvia & Williams, 1987; Terzian, Sternai, Barbato, Tognoni & Saraceno, 1997; Tognoni & Saraceno, 1989.
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inadequate or not available at all. Among Southern health districts, some 39% had no CMHCs. Even where services existed in the South, they served catchment areas with populations 43% larger than catchment areas in the North (de Salvia & Barbato, 1993). Similarly, the South had fewer hospital beds available for psychiatric patients. In sum, the CENSIS data made it obvious that the national network of psychiatric services, at least as of the mid-1980s, was not adequate to meet the growing requirements of a system based on community care. However, a more recent survey showed improvement in this regard: the overall number of mental health services had increased by 55% between 1984 and 1994. Furthermore, regional variations were found to have diminished (de Girolamo & Cozza, 2000). Overall, the heterogeneity in the implementation of the reforms in the first six years was not so much a failure of the basic tenets of the legislation, but its failure to establish standards to guide local and regional authorities and to supply the funds necessary to meet those standards (Frisanco, 1989; Tansella et al., 1987). In regard to the latter, for example, even 10 years after the reforms public mental hospitals continued to absorb 80% of the national expenditures on psychiatric services even though only 30,000 persons remained as inpatients (F. O. Basaglia, 1989; Burti & Benson, 1996). The slow implementation of the law in some regions cannot, however, be blamed on the law itself. Resistance from traditional psychiatrists and mental health professionals was far more important. The record of Italian academic psychiatry has been spotty, as well. Two decades ago, in one of the first English-language assessments of the reforms, Mosher (1982) cautioned that the success of the reforms depended, in part, on the involvement of university psychiatric departments and their willingness to offer medical students and psychiatrists in training the experience of working in the community-based programs. Unfortunately, while giving verbal support to the principles of community-based services, medical schools in Italy continue to train psychiatrists in a strict biomedical model and in methods of hospital-based care (Giuseppe Dell’Acqua, personal communication). Given the lack of data on the status of patients discharged from mental hospitals or provided with care by the CMHCs, it is difficult to come to a definitive conclusion about the merits of the “Italian Experience.” Success has been claimed for programs in Emilia-Romagna (Fioritti et al., 1997), South Verona (Burti, Garzotto, Siciliani, Zimmermann-Tansella & Tansella, 1986; Calabrese et al., 1990; Lesage & Tansella, 1993; Thornicroft, De Salvia & Tansella, 1993; Zimmermann-Tansella & Burti, 1985), Portogruaro (de Salvia & Barbato, 1993; Thornicroft et al., 1993), and Padua (Massignan, 1984). Even in Southern Italy there is some evidence of the positive effects of the reforms in Naples, Cosenza, and Giuliano (Bollini et al., 1988). On the other hand, extremely negative reports have emerged from Naples and Campania (Kemali et al., 1985; Maj, Starace & Kemali, 1989), Central Italy (Romanucci-Ross, 1996), Rome (MacDonald, 1989;
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Palermo, 1991), and Southern Italy generally (Marino et al., 1996). In sum: Little is known, at the national level, about the outcome of discharged psychiatric patients. A few local surveys show a mixed picture. While in some areas, successful deinstitutionalization is described with the extensive development of residential community facilities, elsewhere, large numbers of patients are homeless or have been transferred to other institutions (de Salvia & Barbato, 1993, p. 196).
Nevertheless, although an assessment of the national situation is difficult, there is general agreement that where comprehensive community psychiatric services have been established, a broad range of persons suffering from mental disorders receive excellent care (Burti et al., 1986; Calabrese et al., 1990; Mosher, 1983; Tansella et al., 1987). In a review of Italian psychiatric services 20 years after Law 180, Barbato (1998) concludes that the outcome of the reforms has been, for the most part, positive: New admissions to mental hospitals have all but ceased and admissions to psychiatric units in general hospitals are now limited to the care of acute psychotic episodes. CMHCs have effectively taken over the long-term care of severely mentally ill persons. However, the system continues to be plagued by significant regional variations in the level and quality of services offered by the CMHCs. Fears that the care of patients would be simply transferred from the mental hospitals to other institutions, e.g., nursing homes and private hospitals, have not been borne out. To be fair, this may be taking place in some regions and is a question in need of further investigation. There is no evidence that increasing numbers of mentally ill persons are entering the criminal justice system. In contrast to the situation in many countries of Europe and North America, homelessness or residential instability is rare among users of acute psychiatric services in Italy. Again, however, there is regional variation and homelessness can be a problem for some groups of psychiatric patients. Predictions that the reduction of psychiatric beds would result in a rise in suicide rates (Jones & Poletti, 1985b) have not proven accurate. While Italy has experienced a rise in suicides, the increase began before the reforms and must be attributed to other factors. Despite the positive aspects of the reform, Barbato identified three problems that continue to pose challenges. First, the uneven implementation of the reforms and new services has diminished the overall effectiveness of Law 180. One goal of the latest National Mental Health Plan is to standardize mental health care nationally, but its ability to do so remains to be seen. Second, it also remains to be seen whether community mental health centers can provide effective long-term care
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for severely mentally persons, particularly in the face of the increasing presence of such individuals in the community. In other words, will community mental health centers be overwhelmed by the demands placed on them by attempting to provide care to growing numbers of high demand users of the services? Finally, mental hospitals, particularly in large cities, continue to consume a substantial proportion of the funds designated for mental health care. This problem represents a major impediment to the expansion and improvement of community services.
HISTORY OF REFORMS IN TRIESTE To give a true aspect of the psychiatric reform in Italy it is more useful to examine the progress in one region than give an evaluation of the general situation (Massignan, 1984, pp. 36–37).
The province of Trieste is located at the end of a narrow strip of land, approximately 50 kilometers long and 12 kilometers wide, in the northeasternmost corner of Italy. Walled in by cliffs of limestone, the city of Trieste—which comprises the great majority of the province’s land area and population5—looks out on the Adriatic. Just beyond the cliffs and eastward is Slovenia. Croatia is a short distance to the south. During the 19th Century and until World War I, Trieste flourished as the major port of the Austro-Hungarian Empire, and was a cosmopolitan crossroads—James Joyce, the poet Umberto Saba, the novelist Italo Svevo, and the psychoanalyst Edoardo Weiss all lived and worked there in the first half of the 20th Century. Following World War I, when Trieste came under Italian rule, its economy began to contract as its status as a port declined. World War II and its aftermath brought more social disruptions. From 1948 to 1954, the province was occupied by the Allied Military Government to prevent its takeover by the newly-established communist government of Yugoslavia. During this period, at least 200,000 Yugoslavian immigrants came through the city; some 60,000 remained. All this left Trieste with a dwindling economy, an increasing need for welfare services, and a falling population6 (Bennett, 1985; Giannichedda, 1985). In recent years, Trieste’s economy has stagnated; the city’s golden age, which 5
As of 1999, the estimated populations of the city and the province were 216,728 and 247,918, respectively (Chamber of Commerce of Trieste, 2001). 6 The population of the province has been falling steadily for the past 30 years. Between 1961 and 1971, the population declined by 2.7% (Bennett, 1985). Between the time of Bennett’s visit in 1978 and the WHO Pilot Study in 1983, the provincial population dropped from 300,304 to 280,385 (7.1%); the city’s population fell from 276,000 to 253,098 (9%) (Giannichedda, 1985). The diminishing economic opportunities in the area and emigration of young people are the main reason for the decline. This has left an aging population and an oversupply of housing. Census of 1991 found 10,089 unoccupied homes in the province (Chamber of Commerce of Trieste, 2001).
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occurred during the era of Austro-Hungarian rule, is long gone. Yet, the city retains a good deal of its intellectual heritage. It is the home of a university, a medical school, and centers for the study of astronomy and physics, and it remains the locale for a long-standing and continuing revolution in the treatment of individuals suffering from severe mental disorders—the centerpiece of the work of Franco Basaglia and Psichiatria democratica.
Before 1971 The history of psychiatry in Trieste parallels the events in the rest of Italy at the beginning of the 20th Century. Four years after passage of the 1904 law that mandated the confinement of mentally disturbed persons in provincial asylums (Bollini & Mollica, 1989), Trieste opened a mental hospital—Ospedale Psichiatrico Provinciale—on a pleasant, wooded hillside beyond and above the city limits. On its park-like grounds, a number of separate buildings housed wards and administrative buildings; a church and a theater were situated on what was meant to resemble a town square; several buildings resembled villas. The hospital was functional and clean (Del Giudice, Evaristo & Reale, 1988) and provided care to mentally ill and mentally retarded persons of the working and lower-middle classes. The well-to-do sought care in the university clinic; elderly persons who were mentally ill were treated in the neuropsychiatric units of general hospitals in the area (Bennett, 1985). The attractiveness of the Ospedale Psichiatrico notwithstanding, there is no reason to believe that the care it offered differed greatly from that of other Italian psychiatric hospitals which by the late 1940s were, at best, outdated and concerned with little more than controlling social deviance (Cazzullo et al., 1984; Fioritti et al., 1997). In 1968, at the time of the first amendments to the 1904 legislation, there were about 1,200 mentally ill and mentally retarded patients in the Ospedale Psichiatrico, making it similar in size to 55 other mental hospitals in Italy.7 All but a few of its patients had been admitted involuntarily. The provincial ratios of four psychiatric beds per 1,000 persons and five psychiatrists per 100,000 persons were both almost twice as high as the national averages (Bennett, 1985).
After 1971 Nineteen seventy-one was an important year in Italian psychiatry. For the first time, a medical school offered psychiatry as a speciality. Prior to that, psychiatry had been a sub-field of neurology. It was also the year that the Democrazia Cristiana (Christian Democrat Party) administration of Trieste hired Franco Basaglia to direct the mental health services in the province. Hiring a radical 7
The legislation of 1968 mandated such large mental hospitals to be reduced in size (Maj, 1985).
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whose work was controversial might have seemed an odd choice for a centrist party, but, according to Michele Zanetti,8 the provincial administrator at the time, Basaglia was both “radical and concrete,” meaning that his views about psychiatry and politics were more than balanced by his effectiveness in the practical problems of delivering care. Basaglia’s tenure in Gorizia and Parma demonstrated his ability to move a hospital-based model of care toward a communitybased system. This was especially important to the government of Trieste because expenditures for the old mental hospital were consuming fully 50% of the entire provincial budget.9 When Basaglia arrived, the mental hospital had 1,260 patients, 90% of whom were there on an involuntary basis (Dell’Acqua, 1995). Its staff consisted of 13 doctors, 336 nurses, and 3 social workers. Basaglia hired 10 additional doctors and began to utilize the efforts of students and volunteers who were drawn to Trieste by his charismatic figure and his determination to dismantle the mental hospital as an institution of psychiatric care. He then launched dramatic changes in the nature of care. The use of restraints and isolation rooms were stopped immediately, as were all forms of shock therapy. Within two years all the wards were opened and the first group homes were established by moving small groups of patients into housing that was already available on the grounds of the hospital. There, the patients had their own rooms, cooked and shopped for themselves, and began to take the first steps toward independent living (Bennett, 1985; Dell’Acqua, 1995). Accompanying the changes in care came a reorganization of the hospital. The hospital’s catchment area was divided into five districts, each serving a population of 60,000. Then the hospital itself was arranged into “open communities”—each with its own team of doctors, nurses, and a social worker—that corresponded to the catchment areas in the province (Scheper-Hughes & Lovell, 1986). The division of wards according to gender was ended (Dell’Acqua & Cogliati Dezza, 1985) and patients were assigned to the unit that served the residential district from which they came, rather than on the basis of diagnosis. This made for better working relationships with the institutions and residents of each district, as staff went out to talk with families and provincial officials about the patients under their care (Bennett, 1985; Dell’Acqua, 1995). The arrangement also made for a high degree of continuity of care because, when patients were discharged, they were followed by the same team that had overseen their care in the hospital. In effect, this organization of patients according to catchment area created a number of virtual community mental health centers (CMHCs) in the hospital that 8 9
Zanetti’s politics were to the left of most other members of the Christian Democrat Party. At least initially, this is not unlike the story that had unfolded in the United States where the deinstitutionalization movement brought together social activists and fiscal conservatives in an odd coalition that urged the development of community-based services that, they believed, were better and less expensive (Bachrach, 1992; Jencks, 1994).
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foreshadowed the establishment of comprehensive psychiatric services in the community. It was a brilliant strategy. If Basaglia had attempted to “attack” the hospital by immediately creating CMHCs and discharging large numbers of patients, the strategy would have failed. There were no resources to establish community services. Staff were resistant to and unfamiliar with working outside the hospital. The community needed to be prepared for the shift. And it was necessary to change the legal status of patients so that they could receive the social benefits necessary for them to live outside of the hospital. Therefore, instead of acting precipitously, Basaglia used the resources of the hospital to establish the foundation of community services by carefully and patiently reorganizing all aspects of the hospital and laying the groundwork that would make deinstitutionalization—in the best sense of the term—possible. As in Gorizia, periodic assemblies for all of the patients were initiated, as well as daily staff meetings in each department and frequent meetings of the entire hospital staff (Dell’ Acqua, 1995). The meetings were a vehicle by which patients were able to take an active role in the decision-making that determined much about their lives in the institution. The meetings, too, allowed both patients and staff to question their respective roles in treatment and care. This was a matter of concern for Basaglia, who believed that treatment must be based on a reciprocal relationship between patient and caregiver—a relationship that was systematically absent in the context of the traditional mental hospital (F. Basaglia, 1987). Finally, the meetings gave patients the right to speak their mind. This had certainly been the case in Gorizia: For some patients the assembleas represented the first public occasion at which their angry complaints were recognized for what they were—legitimate demands for unmet human needs—rather than suppressed as essentially meaningless symptoms of psychiatric disease (Scheper-Hughes & Lovell, 1986, p. 165).
One of the most important developments in the early years of reform was the formation of the first patient cooperative in 1973. Until then the mental hospital had depended on the work of some 280 patients who spent long hours cleaning, cooking, performing small maintenance tasks, and even caring for other patients. In return, they received 600 lira (about $.25US) and 80 cigarettes each month (Bennett, 1985). This was called “ergotherapy,” although their work could not be equated with real jobs. Patients received only a pittance in compensation, and their relationship to the nurses was exploitive rather than therapeutic. Patients were performing many of the tasks that should have been performed by hospital staff. Worse, nurses controlled work assignments and doled out privileges at their whim. That is, patients were faced with the “choice” of doing whatever the nurses asked or being denied the small favors that made life bearable, e.g., cigarettes, extra money, coffee.
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It was during the assembleas that patients first voiced their resentment of ergotherapy. In response, the hospital administration devised plans for patients to be employed in a cooperative that offered real wages and more equitable work roles (Dell’Acqua, 1995). Implementing this plan was difficult, however. By law, cooperatives were required to be founded and run by full citizens, but the patients had lost their civil rights upon being involuntarily committed under the legislation of 1904. It was not until 1974 that the cooperative was legally incorporated10 (Bennett, 1985), and it was only following a strike by the patients (Rotelli, Mezzina, De Leonardis, Goergen & Evaristo, n.d.) that the cooperative was able to negotiate a contract with the Provincial Administration to clean the wards, kitchens, toilets and bathrooms. The cooperative, although reliant on the government for the bulk of its work contracts, also had contracts with a school, a theater, and with some individuals in the community (Bennett, 1985). The effect of the cooperative was immediate and far-reaching. Patients were entitled to the wage guaranteed by the National Cleaners’ Contract and, in the event of being asked to perform a task that was not stipulated in the contract, they could refuse without the fear that their privileges would be taken away. In 1978, there were a total of 90 individuals in the cooperative. Twenty-three of the members were non-disabled and brought work experience that made the cooperatives more viable and lessened the social segregation of the former patients who were members (Bennett, 1985). As of 1994, there were about 250 members of several cooperatives that offered a variety of jobs ranging from gardening and building maintenance to hotel management and furniture making. In that same year, the cooperatives generated the equivalent of about $5US million in income11 (Burti & Benson, 1996). At present, half of the cooperative members are clients of the mental health system; of these, one half work full-time while the remainder work on a part-time basis or are in training. Those in training receive support from the European Community vocational programs. Warner and colleagues (Warner et al., 1998) suggest that one reason for the success of the cooperatives in Trieste are the strict restrictions on disability pensions. Only the most severely mentally ill persons are eligible. All other mentally ill individuals must work. Fully productive workers receive $5.75US an hour12 or $920 per month. Less capable individuals work part-time and receive a stipend of about $290 per month with the possibility of an incentive award of $125. The formation of the patient cooperative also changed the role of nurses by finally making them truly responsible for patient care and assistance. At first, 10
To get around the law, at least at first, it was necessary to make the director of a professional school the first president of the cooperative. The next president was a nurse—until the trade unions objected and she had to retire in order to remain president of the cooperative. 11 In nearby Pordenone, cooperatives provided 560 jobs and generated $11US million in income. 12 Full-time workers in Pordenone are paid $6.64US per hour.
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nurses were resistant to the changes. Visits to families helped because the nurses saw patients in new settings and exhibiting different behaviors; eventually they came to understand that the behavior of patients in the hospital reflected conditions in the institution as much, if not more than mental illness. But the changes in responsibilities that came with the reforms and the shift to community care were also fraught with difficulties. Fierce opposition to the reforms came from a nurses’ labor union that was associated with the neo-fascist Movimento Sociale Italiano (Mangen, 1989). During 1972 and 1973, there were strikes by nurses who objected to their working conditions and low pay, the closing of wards, and the presence of volunteers in the hospital (Bennett, 1985; Scheper-Hughes & Lovell, 1986), and many retired rather than work under the new conditions. By 1981, the number of nurses in the Trieste mental health system had fallen from 336 to 230. The crisis worsened when Italy joined the European Community (EC) and it became necessary to conform licensing and educational requirements for nurses to the higher EC standards. Previously, the practice in Italy had been to hire anyone, no matter their education or experience, and then provide on-the-job training. With EC membership, however, stricter educational requirements were mandated. Lack of training institutions for nurses in Northern Italy and a reluctance on the part of nurses in the South to relocate made for an acute nursing shortage in Trieste.13 Eventually, the disputes were resolved. Nurses were allowed to chose where they would work: in the hospital or in the new community services14 (Bennett, 1985). Despite the problems, nurses played a key role in the reforms. Although some of them were extremely resistant to innovation, others became leaders. Their contribution to running the group apartments and community centers has been fundamental to the success of the system.15 By 1972, having discharged a large number of patients, it was possible to close two wards of the hospital (Bennett, 1985). At the same time, it became necessary to plan for the future of those patients who—because they were too old, too ill, or simply had not yet found housing—could not be discharged responsibly. Former wards and other sections of the hospital were converted to group apartments. Additionally, the residents were given a new status, that of ospite or “guest,” rather than patient. Some critics have maintained this was an obfuscation, that patients, in fact, remained in the hospital (Jones & Poletti, 1986a). That 13
The situation was relieved, at least in part, by the formation of a professional nurses’ cooperative in 1989. 14 Much the same agreement was reached with the psychiatrists, with some choosing to continue working in the hospital exclusively. I5 In addition to the nurses, many young volunteers played important roles. At present, the cooperatives are managed and run by young non-health professionals and represent a major asset of the Trieste Department of Mental Health. It was also true that many young psychiatrists came to Trieste because they wanted to work with Basaglia. They formed an “army,” and were also instrumental in the implementation of the reforms.
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perception, however, missed the essential reasons for the new status. First, the change meant that former patients became eligible for social welfare benefits, could work, and had all the rights of any other citizen of the province. The new legal status, as much as anything else, began to undo some of the worst aspects of the mental health law of 1904 which had legally equated commitment in the mental hospital with being sentenced to prison for a felony. Second, the change in status was a tacit acknowledgment by the provincial government and hospital officials that many former patients had been hospitalized involuntarily to conceal rather than to attend to their problems (Bennett, 1985; Dell’Acqua & Cogliati Dezza, 1985). Finally, it was an explicit expression of the belief held by Basaglia and his coworkers that, although people who were mentally ill were in need of care, their illness did not justify the denial of their civil rights. In writing of those early days of reform, Giuseppe Dell’Acqua (1995), the present Director of Trieste’s Department of Mental Health, has stated that with the establishment of the first group apartments and the patient cooperative it became clear that the primary obstacle to changing the psychiatric system and initiating an effective rehabilitation process lay in the legal status of the patient rather than in mental disability itself. The early reforms literally and figuratively opened the gates to the hospital. As ospites, individuals were able to come and go as they wished (Scheper-Hughes & Lovell, 1986). To encourage the interaction of patients and the public, concerts, film festivals, plays, and parties were organized by local political and cultural associations and held on the grounds of the hospital. Patients, students, young people, and the general public all participated (Dell’Acqua, 1995). The most memorable of these events took place in early 1973 when patients and artists built a life-sized, blue papier maché horse named Marco Cavallo (Marco the Horse). The significance of the name was that Marco was the horse that once carried the dirty linen to the launderette. “The oldest patients used to say that he was the only one who managed to get out of the hospital” (Freschi, 1986, p. 43). The new Marco came to symbolize the patients’ new-found freedoms from the inhumane conditions that had once existed in the hospital. On completing Marco Cavallo, 600 patients took it on a parade: And so it happened that on the day of the reunion between the hospital town citizens and Trieste’s town citizens, Marco Cavallo, blue like the freedom of the skies, left the hospital and walked downtown, and behind him walked all the hospital’s residents (Freschi, 1986, p. 43).16
Even in 1973, it was evident that the reforms in Trieste did not resemble the processes that came to be known as deinstitutionalization in other countries of 16
In keeping with the times, on the same day that Marco Cavallo emerged from the hospital, the nurses went on strike for high wages and in protest against the conditions in which they worked. In solidarity, all of the employees of the province joined the strike (Scheper-Hughes & Lovell, 1986).
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Europe and North America. Trieste represented more than discharging patients and moving the institutional techniques of treatment into the community. Everything in those early years was done to prepare patients—as well as hospital staff and the citizens of the province—for life and work outside of the institution. The reforms were not aimed at the simple relief of symptoms but were an attempt to restore social worlds to individuals who had been confined for so long in a total institution. Nowhere was this more evident than in the initiation of regular excursions to mountain or seaside resorts for groups of patients, medical staff, and volunteers (Dell’ Acqua & Cogliati Dezza, 1985). An old villa in Belluno was rented and became the old hospital’s holiday resort; Marco Cavallo went, too (Freschi, 1986). By the end of 1974, the number of residents in the hospital was down to 810: 350 voluntary, 100 involuntary, and 360 ospites (Bennett, 1985). About one-third of those who had been discharged in the previous three years had returned to their families or were living in small apartments and group homes. None had been transferred to other institutions (Dell’Acqua, 1995). By the end of the following year, 403 of the 656 residents who remained were ospites (Dell’Acqua & Cogliati Dezza, 1985). In 1975, a proposal to rebuild the hospital was defeated (Bennett, 1985). In the same year, despite attacks in the press and the courts and accusations of “wild discharges” of patients (Freschi, 1986), the first three CMHCs were established; another three were opened by 1977. This was possible for two reasons. First, Basaglia and his colleagues built support for their work through alliances with the Provincial Administrator, political parties, and labor unions, among others (Scheper-Hughes & Lovell, 1986). Second, Basaglia made the brilliant administrative decision to use the resources of the hospital (its large budget and staff) to move care into the community rather than attempting to establish a community system that operated in competition for the same funds. By doing so, the foundations of community-based care were developed relatively slowly and patients, staff, families, and the province were all given time to habituate to a nonhospital-based system of care. The opening of the CMHCs marked the most critical step in the Trieste reforms. Everything had been leading to this. Staff from the “virtual” communities of the hospital were transferred to the corresponding actual CMHCs that served the catchment areas from which their patients originated. However, because the centers at first lacked beds and night staff, an admission unit was established at the mental hospital. It provided acute care and had a staff of four doctors and 37 nurses. Members of the CMHCs visited patients daily and remained integral to their care. With the new community services, admissions to the hospital fell precipitously. By the end of 1977, only 436 patients remained in the mental hospital and of these 346 were ospites (Bennett, 1985; Dell’Acqua & Cogliati Dezza, 1985). In that same year, a psychiatric emergency service was established in the General Hospital. Previously, in the case of an emergency, the
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casualty officer on duty was likely to initiate a compulsory admission to the mental hospital. With the new service, less than half of patients referred were sent on to the mental hospital’s admission unit. That first year, the emergency service offered 1,144 consultations and a total of only 492 patients were referred for admission (Bennett, 1985). Many of the wards in the old mental hospital were closed already when Law 180 was enacted in 1978. Ten buildings on the grounds provided housing for 346 ospites who remained for financial reasons or because they had nowhere else to go. Two other buildings had accommodations for patients who required nursing care, most of whom were above the age of 65 and had been in the hospital for an average of 20 years. About 200 lived in group apartments under conditions that were little different than if they were living in group apartments in the community (Bennett, 1985). At the same time, most of the CMHCs were open 7 days a week: from 8 a.m. to 9 p.m., Monday to Saturday and 8 a.m. to 3 p.m. on Sunday. Those centers that were able to board patients in emergencies were open 24 hours a day. Morale among the staff at the CMHCs was high. A great amount of their time was spent visiting patients who were ospites on the grounds of the mental hospital, or who lived at home in 14 group apartments and four small flats for individuals that, all together, provided accommodations for about 80 persons (Bennett, 1985). Not everything was positive, however. Although 70% of the hospital’s patients had been discharged, 190 of the 303 nurses in Trieste’s psychiatric services were still employed in the hospital. In part, this was because the patients who remained in the hospital were severely disabled and required extensive nursing care. It was also the result of either an unwillingness on the part of nurses to work in the CMHCs or the belief on the part of the hospital administration that some nurses were unsuitable for work outside of the hospital (Bennett, 1985). Even with the CMHCs, the reforms had not managed to change the reality that the hospital, at least in a financial sense, remained very much at the center of psychiatric services. This problem was not to be solved for some time.17 The old mental hospital was closed in 1980 and, along with it, the admissions unit that had been established there three years before. Many acute cases were being handled at the CMHCs. An Emergency Mental Care Station with eight beds was established at the General Hospital to handle those acute cases that l7
At the time of writing, fully 80% of the mental health budget in Trieste goes to community services and apartments, while only 20% goes to the former asylum. The general managerial and financial philosophy of Basaglia and his successor, Franco Rotelli, was, and continues to be, that the budget must follow the needs of patients wherever they may be—in hospital, at home, or in a group apartment. Early in the development of the reforms, the shift in the allocation of financial resources was a matter of negotiations with the trade unions and the Provincial Administration. The later transition to community-based programs was achieved, to a great extent, through the efforts of Rotelli who has been ingenious in making the administrative system of mental health care in Trieste flexible and oriented to the needs of those who use the services.
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did not present at the CMHCs. Doctors from all the CMHCs worked on a rotating basis in the Emergency Station, and one psychiatrist and 17 nurses were employed there permanently (Dell’Acqua & Cogliati Dezza, 1985). The following year, the administrative structure of the hospital was replaced by the Department of Mental Health and two new services were established on the grounds of the old hospital: a center for drug addicts and another CMHC. In addition to serving a small catchment area of 15,000 persons, the CMHC attended to the needs of the 235 former patients who continued to live on the grounds as ospites (Dell’Acqua & Cogliati Dezza, 1985). The basic structure of psychiatric services in Trieste would remain essentially unchanged for the next two decades. In the early 1990s, the Department of Mental health established three user-directed programs: self-help groups for young people, an information and organizational program for families, and a Women’s Mental Health Center (Dell’Acqua, 1995). As of 1995, fewer than 100 ospites remained on the grounds of the old hospital: 70 in group homes of about ten residents each and 18 in a single geriatric ward for individuals with serious physical disorders. About 60 persons were living independently in residences around the city and receiving support services.18 The staff of the Department of Mental Health consisted of 25 psychiatrists, 180 nurses, 10 psychologists, and 9 social workers (Dell’Acqua, 1995). There were four community mental health operational units19 with catchment areas that corresponded to the general health districts and the operational units that provided social services. Another operational unit administered the residences and rehabilitation programs, and still another provided emergency psychiatric care at the General Hospital (Department of Mental Health—Trieste, 1996). At present, of the 40 buildings that comprised the old hospital, only a few are now utilized by the Department of Mental Health—as administrative offices, residences for ospites, and offices for a substance abuse service. The cooperatives also use buildings for workshops, literacy classes, and offices. The remaining buildings are used by a variety of private and public institutions: schools, the University of Trieste, and city agencies (Department of Mental Health—Trieste, 1996). The CMHCs have assumed all of the functions of the old mental hospital, and more. In each district, the centers offer 24 hour coverage, seven days a week,20 both out- and in-patient care,21 and social assistance services. The centers also serve meals to clients and run the group apartments (Dell’Acqua, 1995).
18
One of the nurses’ cooperatives provides services for the maintenance and management of the group homes and rehabilitation programs. 19 In 1992, the number of CMHCs was reduced because of population decline (Dell’Acqua, 1995). 20 Some districts divide the coverage between two CMHCs with each open for 12 hours a day. 21 For acute care, the CMHCs provide 8 beds in each catchment area.
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HAVE THE REFORMS BEEN SUCCESSFUL IN TRIESTE? Franca Ongaro Basaglia must have been thinking of Trieste when, in reflecting on the first ten years of reforms under Law 180, she wrote: The most viable and effective operative model is a Mental Health Department guaranteeing a 24-hour service, eight days a week. Covering the whole population of a given area, it would provide care for patients at the various stages of suffering, offering the possibility of full-time care and hospitality both day and night, as well as treatment at home or in the surgery, and residential solutions of a therapeutic and/or care kind, backed up by economic and social supports in strict cooperation with social services (1989, p. 96).
Today, Trieste remains one of the best examples of the Italian mental health reforms that were first initiated by Basaglia and his colleagues in Gorizia. The Ospedale Psichiatrico Provinciate has been closed for 20 years. CMHCs offer services to the city and province of Trieste 24 hours a day, every day of the year. The general hospital provides beds for the care of individuals suffering from acute psychotic episodes. The cooperatives are active and supply jobs to many former patients. Residential facilities allow many people with severe mental illness to live and work in the community. Family support services make it possible for most users of psychiatric services to live with their families. Most importantly, deinstitutionalization in Trieste has meant more than merely transferring treatment techniques to nonhospital locales; it has signified a rejection of the former practices of Italian psychiatry which were rooted in the narrow biological treatment of psychopathology. The services in Trieste are directed toward “connecting and placing the patient in contact with a system of relations and human and material resources” (Dell’Acqua & Mezzina, 1988, p. 156). That is, working to reintegrate the patient into the social and personal worlds from which he or she has been torn by the onset of severe mental illness. A spirit of self-examination has allowed the mental health services of Trieste to undergo an on-going evolution that started with the humanization of the asylum and continued through the development of community services. However, in the general absence of outcome data and mental health services research, it is difficult to assess the extent to which the Trieste model is successful either in meeting its stated goal or in “preventing or lessening morbidity, distress, and disability for the patients and for those with whom they [are] living”22 (Bennett, 1985, p. 86). The available data, however, are encouraging. Dell’Acqua (1995) reports on several pieces of intriguing evidence: 1) between 1978 and 1994, the number of compulsory treatments fell from a high 22
Family burden, for example, is reported to be a problem (Burti & Benson, 1996), although it is unclear whether the burden of care in Trieste is greater than in other regions of Italy.
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of 117 to an average of only 11 per year; 2) in 1977, 15 persons from Trieste were sent to Forensic Psychiatric Hospitals, but only 25 persons were sent between 1978–1994; 3) suicides have remained constant and there has been no increase in crime associated with mental illness; and, 4) expenditures for psychopharmaceuticals have been cut in half from the levels of 1971. Additionally, a follow-up study at one of the CMHCs demonstrated that crisis intervention was effective and resulted in generally good long-term outcomes (Mezzina & Vidoni, 1995). While all of these data appear impressive, interpretation is difficult in the absence of precise clinical and psychosocial evidence or comparable data from other mental health service systems in Italy or elsewhere. One can only hope that the Department of Mental Health in Trieste initiates research on the effects of different models of community care on the experiences of persons with severe mental illness. Patient outcome and quality of life data, measures of family burden, economic analyses, and an investigation of community level benefits of the services are required to make a definitive evaluation of the success of the mental health services in Trieste. Even in the absence of such evidence, one pointed criticism can be made. The mental health services of Trieste are almost exclusively geared toward the needs of “the urgent demands of the acutely psychotic patient” (Bennett, 1985, p. 81), thus neglecting the needs of individuals suffering from common mental disorders. Given the significant burden of depression (Murray & Lopez, 1996), for example, this is a significant problem that must be addressed.
WHAT LESSONS DOES TRIESTE OFFER? Elements Critical for Success The success of the mental health reforms in Trieste have not been merely the result of the presence and work of one charismatic leader. Nor has their success been a simple matter of organizational restructuring. The closing of the mental hospital, the establishment of community services, and the reorientation of care toward the social reintegration of patients were achieved because of a clear and comprehensive vision of the need to reform the institution of psychiatry and not merely the asylum. This meant working constantly toward the establishment of a model of care that helped patients to leave the hospital while, at the same time, providing the means by which they would be able to take their places in the social worlds from which they came. The development of comprehensive community services, family services, residential facilities has been critical. But more was needed: the establishment of cooperatives and the reinstatement of the civil rights of former patients: Any attempt to address the problem of mental illness which does not include basic structural changes will prove meaningless. Any real solutions must deal
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Alex Cohen and Benedetto Saraceno with what happens to mental patients when they are released, their difficulty in finding work, the social environment which rejects them, and all the circumstances that force them back into the psychiatric hospital (F. Basaglia, 1987, p. 73).
One must not suppose, however, that Franco Basaglia was solely responsible for the reforms. He was an important leader and a catalyst for change, but he was working within a social and political climate that was, itself, impelling change (Mosher, 1982). One must remember that although Basaglia initiated the reforms in Trieste—both theoretically and practically—his leadership lasted only nine years. In the decades after Basaglia left for Rome, the mental health services in Trieste have continued to develop and thrive under the direction of Franco Rotelli and Giuseppe Dell’Acqua. Indeed, Rotelli administered the services for 15 years and, at present, is Director of all the health services in Trieste. One must also acknowledge that many of the young psychiatrists, nurses, and nonmedical personnel who were drawn to Trieste by Basaglia in the 1970s have remained and continue to work in the Department of Mental Health. A perspective that went beyond mental health services has also been important to the success of reforms in Trieste. Basaglia and his colleagues fostered ties to a number of influential sectors of the community. Political alliances were essential for ensuring the continued support of the provincial government in fostering the reforms. This included constant attention to obtaining the support of policy-makers in regard to both legal and financial issues. That Rotelli is now General Director of the public health system in Trieste speaks of the extent to which the Department of Mental Health saw itself as one component of a larger system. Although the process of closing the mental hospital caused contention with the nurses in the beginning, nurses now play an instrumental role. One of the cooperatives is comprised of nurses who provide support services to the residential units. The mental health system has also recruited many non-professionals, a strategy that brings different perspectives and areas of expertise to the services.
Lessons from Trieste Before considering how the mental health reforms in Trieste can inform efforts to develop psychiatric rehabilitation programs in the developing world, one must ask whether Trieste offers lessons for mental health reforms anywhere. An argument can be made that Trieste is unique, that what occurred there cannot be replicated. The province is comparatively small and may have little relevance for much larger metropolitan areas such as Rome23 and Naples. Trieste’s declining
23
Basaglia died shortly after he moved to work in Rome and before he had the opportunity to demonstrate that his work in Trieste could be replicated in a large urban center.
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population has left a surplus of housing which has made it possible to provide group apartments. This might not be so easily accomplished where housing is in short supply and expensive. The presence of a supportive provincial administration made everything possible—radical mental health reforms would not have been possible in a hostile political and social environment. However, the success of reforms in Trieste is not unique. Experiences in Emilia-Romagna (Fioritti et al., 1997), Bologna (Warner et al., 1998), Portogruaro (de Salvia & Barbato, 1993), and South Verona (Lesage & Tansella, 1993) demonstrate that the mental health services in these cities are excellent.
Lessons for Mental Health Programs in the Developing World During the 19th and early 20th centuries, European colonial governments established large psychiatric institutions throughout Asia and Africa (Goddard, 1992; Jackson, 1999; Schmidt, 1967; Swartz, 1999). After the end of European rule, the old asylums, in which conditions were generally horrendous, were the only mental health facilities that remained in the former colonies. To a great extent, this has not changed in the past 40 years, and much of the developing world is faced with the problems that Basaglia grappled with first in Gorizia and later in Trieste. For example, in the early 1980s, the conditions at a mental hospital in Mogadishu, Somalia were described as “medieval” (Omar, 1986). There were no recreational facilities or rehabilitation programs. Most patients were locked into rooms that lacked both furniture and sanitary facilities. In 1983, efforts to improve conditions were initiated. Patients were removed from confinement and an occupational therapy program was established. Funds were raised for medications. Many patients were discharged following psychiatric assessments that determined many patients did not require hospitalization and could be followed on an outpatient basis. In a scene reminiscent of the parade lead by Marco Cavallo and the holidays for patients of the old asylum of Trieste, an outing to the beach was organized for patients who remained in the hospital in Mogadishu. Many people, including hospital staff, opposed the plan, believing that mentally ill persons should not be allowed out. Despite objections, the outing proceeded as planned. At the beach, the patients danced, played games, and went swimming. They cooked their own meals and cleaned up afterwards. On the way back to the hospital, they were taken on a tour of the city. “They were all cheerful and happy to see the growing Mogadishu, for most of them had been in hospital for years” (Omar, 1986, p. 132). Non-institutional systems of care for people suffering from severe mental illness can be established in the developing world. Indeed, given what we know about institutional care everywhere, there is no choice. The lessons from Trieste go beyond the technical development of mental health services, however. The concept of care must encompass more than
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non-institutional living and medication. It must include family and support services, as well as assurances for the basic subsistence needs of people with severe mental illness. It must, that is, address the social environment that rejects and forces them back into the psychiatric hospital (F. Basaglia, 1987). As Director General of Public Health, Franco Rotelli is working to generalize the principles of the mental health reforms and transform all of health care into a more humane system, one that attempts to balance the need for greater cost-effectiveness with a particular attention to the psychosocial needs of the people it serves. The real “discovery” of the Trieste experience, then, is that all health (both physical and mental) is a matter of human development, and not just a matter of medical technologies. Following the mental health reforms, health services for the elderly, for children and adolescents, and for women are all becoming linked with the community and the social environment. The empowerment of clients is now seen as necessary for better health, and is now a critical element of the general health system in Trieste. And the medical and psychiatric constituents are partners within a general system, rather than competitors. Indeed, these are lessons that can help to improve health systems throughout both the developing and developed worlds. In brief, the “Italian Experiment” offers the following lessons: Hospital-based systems of care can be transformed into community-based systems. Transferring the locus of care is not enough. The nature and goal of care must be changed. People with severe mental illness must be treated with respect, accorded full civil and human rights, and supported in their efforts to live meaningful and useful lives. Contrary to the experience in the United States, reducing the numbers of patients in long-term psychiatric facilities does not necessarily result in large numbers of homeless mentally ill people. Psychiatric care does not depend on psychiatrists alone. Psychologists, social scientists, social workers, nurses, and community health workers all have important roles to play. The social aspects of care, e.g., reintegration into the community and support for families, as well as guarantees of subsistence needs, e.g., housing and income, are at the very center of treatment interventions. Above all, Trieste forces one to remember that a diagnosis of severe mental illness does not deny a person of his or her humanness.
CONCLUSION The institution which we have been debating for the last twenty years is not the mental hospital, but madness (Rotelli, 1988, p. 189).
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The City of Trieste now surrounds the grounds of the old Ospedale Psichiatrico Provinciale. Its buildings are no longer those of a hospital. The old emergency facility for men now houses a 24-hour mental health center, an office of occupational medicine, apartments for former patients, and a beauty center. Another building is used for services for disabled persons. The former “little town” on the hospital grounds now houses a church, bar, and apartments. The administrative offices of the mental health services occupy a site that was formerly made up of large wards for men. Some buildings have fallen into disrepair or been abandoned. Most important of all, the nature of psychiatry in Trieste has been transformed. In November 1998, one of the authors (AC) asked Dr. Giuseppe Dell’Acqua about the uneven success of Law 180 and the harsh criticisms of the reforms. Dr. Dell’Acqua responded that the attacks on the reforms reflected a defense of traditional, institutional-based psychiatry in Italy which had resisted the reforms and rejected the tenet that individuals with mental illness must be treated as whole persons. When it was suggested that some of the criticisms might come as a result of regional variations in the implementation of the reforms, Dr. Dell’Acqua did not agree. He readily acknowledged the regional variations, but asserted that the essential feature of the reforms—that all persons with mental illness have civil rights—was now true everywhere in Italy. As important as the restoration of rights was, Basaglia’s notion of freedom went beyond a narrow concern with legal status. Indeed, it was strikingly similar to that offered by Amartya Sen (1999) who believes that freedom is the foundation, rather than the result, of human and economic development. In much the same way, Basaglia thought of freedom as a prerequisite for effective care, rather than a condition for which one strives through treatment. Furthermore, Basaglia’s concept of freedom spoke to something essentially human. To illustrate this point he offered the parable of the serpent that crawled into the mouth of a sleeping man. The serpent slid into the man’s stomach, settled there, and imposed its will. The man lived at its mercy. Eventually, the serpent left but, even then, the man was lost because, during the time of being dominated by the serpent, he had lost his ability to “act autonomously.” Instead of freedom he found only the emptiness of the void ... . The man was left with the awesome task of reclaiming, little by little, the former human content of his life (F. Basaglia, 1987, p. 85).
This is the risk of freedom: giving the person with severe mental illness the difficult and challenging opportunity to create a meaningful life. But one must not think that the serpent of the parable represents only severe mental illness. For Basaglia and his colleagues, the serpent also represented the institution of psychiatry. By objectifying patients, by reducing them to diagnoses, by utilizing a narrow definition of what constitutes psychiatric treatment, a person is robbed of his or her will. The risk of freedom extends beyond the isolation and “annihilation”
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of patients in the mental institution. By giving freedom to the patient, and thereby, relinquishing a degree of power, there is a risk to the practitioner who is compelled to examine his or her role in the institution. As Basaglia put it: [O]ur encounter with the mental patient has shown us that we are all slaves of the serpent and that unless we attempt to destroy him, or expel him, we will never be able to reclaim the humanity of our lives (F. Basaglia, 1987, p. 85).
The risk of freedom, then, encompasses all of psychiatry—patient and practitioner alike.
REFERENCES Bachrach, L. L. (1992). What we know about homelessness among mentally ill persons: An analytical review and commentary. Hospital and Community Psychiatry, 43, 453–464. Barbato, A., Terzian, E., Saraceno, B., De Luca, L., & Tognoni, G. (1992). Outcome of discharged psychiatric patients after short inpatient treatment: An Italian collaborative study. Social Psychiatry & Psychiatric Epidemiology, 27, 192–197. Barbato, A., Terzian, E., Saraceno, B., Montero Barquero, F., & Tognoni, G. (1992). Patterns of aftercare for psychiatric patients discharged after short inpatient treatment: An Italian collaborative study. Social Psychiatry & Psychiatric Epidemiology, 27, 46–52. Barbato, A. (1998). Psychiatry in transition: Outcomes of mental health policy shift in Italy. Australian & New Zealand Journal of Psychiatry, 32, 673–679. Basaglia, F. O. (1985). Italy’s aborted psychiatric reform. International Journal of Mental Health, 14(1–2), 9–21. Basaglia, F. O. (1987). Preface. In N. Scheper-Hughes & A. M. Lovell (Eds.), Psychiatry inside out: Selected writings of Franco Basaglia (pp. xi–xxv). New York: Columbia University Press. Basaglia, F. O. (1988). Italian psychiatric reform as a reflection of society. In S. Ramon & M. G. Giannichedda (Eds.), Psychiatry in transition: The British and Italian experiences (pp. 273–281). London: Pluto Press. Basaglia, F. O. (1989). The psychiatric reform in Italy: Summing up and looking ahead. International Journal of Social Psychiatry, 35, 90–97. Basaglia, F. (1985). What is psychiatry? International Journal of Mental Health, 14(1–2), 42–51. Basaglia, F. (1987). Psychiatry inside out: Selected writings of Franco Basaglia (N. Scheper-Hughes & A. M. Lovell, Eds.) (A. M. Lovell & T. Shtob, Trans.). New York: Columbia University Press. Basaglia, F. (1988). Crisis and identity: Extracts from the theory of Franco Basaglia [Selected by Maria Grazia Giannichedda]. In S. Ramon & M. G. Giannichedda (Eds.), Psychiatry in transition: The British and Italian experiences (pp. 252–260). London: Pluto Press. Bassuk, E. L. & Lamb, H. R. (1986). Homelessness and the implementation of deinstitutionalization. New Directions for Mental Health Services, 30, 7–14. Benaim, S. (1983). The Italian experiment. Bulletin of the Royal College of Physicians, 7, 7–10. Bennett, D. H. (1985). The changing pattern of mental health care in Trieste. International Journal of Mental Health, 14(1–2), 70–92. Bollini, P. & Mollica, R. F. (1989). Surviving without the asylum: An overview of the studies on the Italian reform movement. Journal of Nervous and Mental Disorders, 177, 607–615. Bollini, P., Reich, M., & Muscettola, G. (1988). Revision of the Italian psychiatric reform: North/South differences and future strategies. Social Science & Medicine, 27, 1327–1335.
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Burti, L., & Benson, P. R. (1996). Psychiatric reform in Italy: Developments since 1978. International Journal of Law & Psychiatry, 19(3–4), 373–390. Burti, L., Garzotto, N., Siciliani, O., Zimmermann-Tansella, C., & Tansella, M. (1986). South Verona’s psychiatric service: An integrated system of community care. Hospital and Community Psychiatry, 37, 809–813. Calabrese, L. V., Micciolo, R., & Tansella, M. (1990). Patterns of care for chronic patients after the Italian psychiatric reform: A longitudinal case register study. Social Science & Medicine, 31, 815–822. Canosa, R. (1979). Storia del Manicomio in Italia dell’ Unità a oggi. Milano: Feltrinelli Editore. Carrino, L. (1985). Changing psychiatry: Aspects of the Italian experience. International Journal of Mental Health, 14(1–2), 105–124. Cazzullo, C. L., Comazzi, A. M., Guaraldi, G. P., Rigatelli, M., & Verdecchiaa, A. (1984). General hospital psychiatry in Italy: On the hospitalization of psychiatric patients and consultationliaison psychiatry after Law 180, 1978. General Hospital Psychiatry, 6, 261–265. Chamber of Commerce of Trieste. (2001). Trieste: Facts and figures. Available: http://www.ts. camcom.it/english/tsincifre.htm (Accessed 22 May 2001). Crepet, P. (1990). A transition period in psychiatric care in Italy ten years after the reform. British Journal of Psychiatry, 156, 27–36. Crepet, P. & Pirella, A. (1985). The transformation of psychiatric care in Italy: Methodological premises current status, and future prospects. International Journal of Mental Health, 14(1–2), 155–173. de Girolamo, G. (1985). Misunderstanding the Italian experience. British Journal of Psychiatry, 147, 451–452. de Girolamo, G. (1989). Italian psychiatry and reform law: A review of the international literature. International Journal of Social Psychiatry, 35, 21–37. de Girolamo, G. & Cozza, M. (2000). The Italian psychiatric reform: A 20-year perspective. International Journal of Law & Psychiatry, 23, 197–214. de Salvia, D. & Barbato, A. (1993). Recent trends in mental health services in Italy: An analysis of national and local data. Canadian Journal of Psychiatry, 38, 195–202. Del Giudice, G., Evaristo, P., & Reale, M. (1988). How can mental hospitals be phased out? In S. Ramon & M. G. Giannichedda (Eds.), Psychiatry in transition: The British and Italian experiences (pp. 199–207). London: Pluto Press. Dell’Acqua, G. (1995). Trieste twenty years after: From the criticism of psychiatric institutions to institutions of mental health. Unpublished paper, Trieste, Italy. Dell’Acqua, G., & Cogliati Dezza, M. G. (1985). The end of the mental hospital: A review of the psychiatric experience in Trieste. Acta Psychiatrica Scandinavica, 71(suppl. 316), 45–69. Dell’Acqua, G., & Mezzina, R. (1988). Responding to crisis: Strategies and intentionality in community psychiatric intervention. For Mental Health, 1, 139–158. Department of Mental Health – Trieste (1996). Shouldering the burden (providing treatment) for persons with schizophrenic disturbances in the community: The deinstitutionalized model. Unpublished paper, Trieste, Italy. Fioritti, A., Lo Russo, L., & Melega, V. (1997). Reform said or done? The case of Emilia-Romagna within the Italian psychiatric context. American Journal of Psychiatry, 154, 94–98. Freschi, M. (1986). The Italian strategy to community care: An historical perspective. International Journal of Therapeutic Communities, 7. Frisanco, R. (1989). The quality of psychiatric care since the reform law: The CENSIS survey. International Journal of Social Psychiatry, 35, 81–89. Giannichedda, M. G. (1985). Mental health services in pilot study areas: Trieste pilot study area. Copenhagen: World Health Organization. Goddard, M. (1992). Bedlam in paradise: A critical history of psychiatry in Papua New Guinea. Journal of Pacific History, 27, 55–72.
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Jackson, L. A. (1999). The place of psychiatry in colonial and early postcolonial Zimbabwe. International Journal of Mental Health, 25(2), 38–71. Jencks, C. (1994). The homeless. Cambridge, Mass: Harvard University Press. Jones, K. & Poletti, A. (1984). The mirage of a reform. New Society, 1137, 10–12. Jones, K. & Poletti, A. (1985a). The Italian transformation of the asylum: A commentary and review. International Journal of Mental Health, 14(1–2), 195–212. Jones, K. & Poletti, A. (1985b). Understanding the Italian experience. British Journal of Psychiatry, 146, 341–347. Jones, K. & Poletti, A. (1986a). The Italian experience reconsidered. British Journal of Psychiatry, 148, 144–150. Jones, K. & Poletti, A. (1986b). The Italian experience in mental health care. Hospital and Community Psychiatry, 37, 795–802. Jones, K., Wilkinson, G., & Craig, T. K. (1991). The 1978 Italian mental health law: A personal evaluation. British Journal of Psychiatry, 159, 556–561. Kemali, D., Perris, C., Maj, M., Amati, A., & Vacca, L. (1985). Application of the psychiatric reform act in the city of Naples: A survey of requests for compulsory admission to the special unit at the university psychiatric department I. Acta Psychiatrica Scandinavica, suppl 316, 127–134. Lamb, H. R. (1984). Deinstitutionalization and the homeless mentally ill. In H. R. Lamb (Ed.), The task force report of the American Psychiatric Association (pp. 55–74). Washington, DC: American Psychiatric Association. Lamb, H. R. (1998). Deinstitutionalization at the beginning of the new millennium. Harvard Review of Psychiatry, 6, 1–10. Lesage, A. D. & Tansella, M. (1993). Comprehensive coummunity care without long stay beds in mental hospitals: Trends from an Italian good practice area. Canadian Journal of Psychiatry, 38, 187–194. Lovell, A. M. (1985). From confinement to community: The radical transformation of an Italian mental hospital. In P. Brown (Ed.), Mental health care and social policy. Boston: Routledge & Kegan. Lovell, A. M. (1986). The paradoxes of reform: Reevaluating Italy’s mental health law of 1978. Hospital and Community Psychiatry, 37, 802–808. MacDonald, L. D. (1989). Community psychiatric care in Italy: The Rome example. International Journal of Social Psychiatry, 35, 71–80. Maj, M. (1985). Brief history of Italian psychiatric legislation from 1904 to the 1978 reform act. Acta Psychiatrica Scandinavica, 71 (suppl. 316), 15–25. Maj, M., Starace, F., & Kemali, D. (1989). Implementing psychiatric reform in Southern Italy: The case of Campania. International Journal of Social Psychiatry, 35, 46–53. Mangen, S. (1989). The politics of reform: Origins and enactment of the Italian ‘experience.’ International Journal of Social Psychiatry, 35, 7–19. Marino, S., Frattura, L., De Luca, L. F., De Francesco, M., Olivieri, & Saraceno, B. (1996). The provision of psychiatric care in Southern Italy: Results for the ‘psychiatry in Southern Italy’s services’ (de psisi) survey. International Journal of Social Psychiatry, 42(3), 181–192. Massignan, L. (1984). Psychiatric reform in the Veneto region of Italy: The state after five years. Acta Psychiatrica Scandinavica, 70, 36–43. Mezzina, R. & Vidoni, D. (1995). Beyond the mental hospital: Crisis intervention and continuity of care in Trieste. A four year follow-up study in a community mental health centre. International Journal of Social Psychiatry, 41, 1–20. Minard, M. (1985). Sector psychiatry in France–democratic psychiatry in Italy. International Journal of Mental Health, 14(1–2), 139–148. Mollica, R. F. (1985a). From Antonio Gramsci to Franco Basaglia: The theory and practice of the Italian psychiatric reform. International Journal of Mental Health, 14(1–2), 22–41.
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Rotelli, F. (1988). The invented institution. For Mental Health, 1, 189–196. Rotelli, F., Mezzina, R., De Leonardis, O., Goergen, R., & Evaristo, P. (N.d.). Is rehabilitation a social enterprise?. Unpublished paper, Trieste, Italy. Saraceno, B. & Tognoni, G. (1989). Methodological lessons from the Italian psychiatric experience. International Journal of Social Psychiatry, 35, 98–109. Scheper-Hughes, N. & Lovell, A. M. (1986). Breaking the circuit of social control: Lessons in public psychiatry from Italy and Franco Basaglia. Social Science & Medicine, 23(2), 159–178. Schmidt, K. E. (1967). Mental health services in a developing country in South-East Asia (Sarawak). In H. C. Freeman & J. Farndale (Eds.), New aspects of the mental health services. Oxford: Pergamon Press. Sen, A. (1999). Development as freedom. New York: Alfred A Knopf. Swartz, S. (1999). “Work of mercy and necessity”: British rule and psychiatric practice in the Cape Colony, 1891–1910. International Journal of Mental Health, 28(2), 72–90. Tansella, M. (1985). Misunderstanding the Italian experience. British Journal of Psychiatry, 147, 450–451. Tansella, M., DeSalvia, D., & Williams, P. (1987). The Italian psychiatric reform: Some quantitative evidence. Social Psychiatry, 22, 37–48. Terzian, E., Sternai, E., Barbato, A., Tognoni, G., & Saraceno, B. (1997). Epidemiology of psychiatric care of patients with severe mental disorders in Italy: Rationale and design of a prospective study, and characteristics of the cohort. Social Psychiatry & Psychiatric Epidemiology, 32, 298–302. Thornicroft, G., De Salvia, D., & Tansella, M. (1993). Urban-rural differences in the associations between social deprivation and psychiatric service utilization in schizophrenia and all diagnoses: A case-register study in Northern Italy. Psychological Medicine, 23, 487–496. Tobino, M. (1985). Psychiatry in Italy since the promulgation of Law 180. International Journal of Mental Health, 14(1–2), 125–138. Tognoni, G. & Saraceno, B. (1989). Regional analysis of implementation. International Journal of Social Psychiatry, 35, 38–45.
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Warner, R., De Girolamo, G., Belelli, G., Bologna, C., Fioritti, A., & Rosini, G. (1998). The quality of life of people with schizophrenia in Boulder, Colorado, and Bologna, Italy. Schizophrenia Bulletin, 24, 559–568. Zimmermann-Tansella C. & Burti, L., Faccincani. (1985). Bringing into action the psychiatric reform in South Verona: A five-year experience. Acta Psychiatrica Scandinavica, 71(suppl. 316), 71–86.
Chapter
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Indigenous Models for Attenuation of Postpartum Depression Case Studies From Fiji And Hong Kong ANNE E. BECKER AND DOMINIC T. S. LEE
INTRODUCTION Cross-cultural epidemiologic data demonstrate that postnatal illness is a global and prevalent health problem. The prevalence of maternity blues is reportedly up to 50% or more of all postnatal women in some societies (e.g., Jamaica, Tanzania, and the U.K.). The reported incidence of postpartum depression varies considerably (depending on cultural context, interval after birth investigated, and methods of assessment), but is close to 10% in studies of postpartum women in cultures as disparate as the U.K., the U.S.A., Japan, Nigeria, Uganda, and Chile. Postpartum psychosis is somewhat more rare, but also potentially far more clinically serious, and occurs in 0.1–0.2% of recently delivered women (Kumar, 1994). Postnatal illness not only poses significant risk to the patient in terms of occupational and social function, and risk of suicide and even infanticide (Davidson & Robertson, 1985; Appleby, Mortensen & Faragher, 1998), but increasing evidence also suggests that it may adversely impact the maternal–infant relationship, with negative consequences for child development in the cognitive and socio-emotional realms (Murray & Cooper, 1997; Cooper et al., 1999). Thus, individual, family, and community costs associated with postnatal illness are potentially high. 221
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The etiology of postpartum illness is poorly understood but likely to be multifactorial with psychological, biological, and social contributions; increasing evidence indicates that social factors may pose risk for or provide significant protection against postnatal depression. Specifically, in studies in European and American samples, social supports correlated negatively with postpartum depression (Paykel, Emms, Fletcher & Rassaby, 1980; O’Hara, 1986; Gjerdingen & Chaloner, 1994; Beck, 1996; Barnet, Joffe, Duggan, Wilson & Repke, 1996). Poor social support has also been identified as a risk factor for postpartum depression among Vietnamese, Arabic, and South African women (Stuchbery, Matthey & Barnett, 1998; Ghubash & Abou-Saleh, 1997; Cooper et al., 1999). Despite the ample evidence that social supports may be protective against postpartum depression, there has been little investigation of how interventions aimed at bolstering social supports in the postpartum could reduce the risk of maternal depression. The very limited data do suggest, however, that this approach could be effective in reducing postpartum emotional distress. For instance, one study found that simple prenatal instruction meant to enhance postnatal social supports, such as instruction that infant care is a shared responsibility, that women should seek help from women more experienced in child care, and that postpartum women should get plenty of rest and sleep, was associated with significantly less postpartum distress than when no such instruction was given (Gordon & Gordon, 1960). Similarly, another study found that home visits in the prenatal and postpartum period by trained peers reduced psychological distress compared with women without these supports (Marcenko & Spence, 1994). Notwithstanding the current dominance of a biologic paradigm in Western psychiatric practice and research, this is still a rather surprising lacune in the postpartum literature. Remarkable diversity in postnatal supports to new mothers has been reported cross-culturally, and it has been suggested that formal, socially structured supports may play a role in reducing the prevalence of postpartum depression in some societies (Stewart & Jambunathan, 1996; Dankner, Goldberg, Fisch & Crum, 2000). Whereas most societies restrict work postnatally, few societies suspend usual work duties for prolonged periods of time; indeed, approximately 50% of societies expect a full return to usual work responsibilities within a period of two weeks (Jiminez & Newton, 1979). Stern and Kruckman (1983) suggest that certain cultural traditions may be invoked to support women in the postpartum including a formal structuring of a distinct postpartum period, measures to protect presumed vulnerabilities of a new mother, social seclusion, mandated rest, assistance from relatives and midwives, and explicit social recognition of the mother’s new status. Indeed, there are numerous examples from the cross-cultural literature documenting locally sanctioned mandated rest periods for postpartum women. These range from a mandated 48 hour third-party reimbursed hospital stay for American women, to a seven day period of seclusion and mandated rest for Kokwet (Kenya) postpartum women (Harkness, 1987), to
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month long rest periods in China (Pillsbury, 1978) and among the Hmong (Stewart & Jambunathan, 1996), to a three to twelve month rest period among Fijian new mothers (Becker, 1998).
TRADITIONAL POSTPARTUM CUSTOMS AND PSYCHOLOGICAL WELL-BEING A number of anthropological and psychiatric studies have investigated the relationship between traditional postpartum customs and postpartum depression. Whereas epidemiological research in Western societies shows that postnatal depression consistently occurs in 10 to 20% of recently delivered women, anthropological studies suggest that postnatal depression is rare or even absent in some traditional societies. For instance, in the 1960s, Kelly reported that postnatal depression was rare among the Ibibio people of Nigeria (Kelly, 1967). In another Nigerian study, Jinadu and Daramola studied 400 postpartum Yoruba women and concluded that the proportion of women reporting psychological symptoms was less than that reported in European or American populations (Jinadu & Daramola, 1990). Likewise, in Japan, Okano reported a 3% incidence of postnatal depression based on the DSM-III diagnostic criteria (Okano, 1989). In another study using the Edinburgh Postnatal Depression Scale (EPDS), Okano also found that 3.1% of the subjects were high scorers, a rate substantially lower than the corresponding figures reported in the West (Okano et al., 1996). A recent study in Malaysia also showed that Asian women had a low rate of postpartum depression (Kit, Janet & Jegasothy, 1997). Last but not least, low rates of postpartum depression have also been reported in Chinese populations (Lee et al., 1998). Pillsbury reported that postnatal depression was not evident among Chinese women in the People’s Republic of China and Taiwan (Pillsbury, 1978). Zheng et al. (1996) and Lee et al. (1997) also reported absence and low rate of postpartum depression among women in Shantou (a rural area in Southern China) and Xi’an (a city in central China). Thus, it appears that postnatal depression is not a universally prevalent condition. Indeed, some have argued that postnatal depression is a culture bound syndrome of industrialized and Western societies in which traditional postpartum customs no longer exist (Stern & Kruckman, 1983). The disappearance of these rites of passage with modernization and urbanization reconfigures the lived postpartum experience. In most modern societies, the postpartum period is poorly defined and vulnerability is seldom acknowledged. Postpartum women are expected to resume their usual duties and to demonstrate their competence in coping with the entailed changes. Vulnerability is often equated with weakness, incompetence, and even failure. The lack of cultural rites also means that postpartum social support can be especially variable and inconsistent.
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Because a lack of social support has been repeatedly shown to lead to maternal distress and increased risk of postpartum depression (O’Hara & Swain, 1996), there is reason to believe that culturally formalized mandated rest and social support for postpartum women may have beneficial consequences for postpartum women and their communities. Specifically, research from Fiji and Hong Kong suggests that culturally sanctioned enhanced social supports in the postpartum may attenuate postnatal illness. In this paper, we suggest that the identification and support of local traditional practices supporting postpartum women may suggest an appealing, cost-effective, and easily implemented public health strategy for addressing postnatal illness in a variety of cultural settings.
POSTNATAL ILLNESS AND SOCIAL SUPPORTS IN FIJI Fiji is an archipelago of more than 300 islands on the cultural and geographic boundary between Melanesia and Polynesia. Ethnic Fijian society has traditionally been patrilocal and exogamous, meaning that a young woman relocates to a new kin group upon marriage, often removing her from familiar social supports. As is the case in many societies, a Fijian woman’s social status after marriage is precarious prior to producing children. Indeed, women who do not become pregnant are often subject to the bitter complaint that they are “just wasting the cassava” (sa kana oti na tavioka, Fijian). On the other hand, motherhood effects an important social transition in a woman’s life, solidifying her position in her new kin group and moving her into the important social role of mother (Becker, 1995). Traditionally a subsistence agriculture economy, Fiji’s economy is now becoming a cash-based economy, ever more subject to globalizing economic forces. Despite the wide availability of biomedical health care services, ethnic Fijians continue to use an eclectic mixture of biomedical, folk, and popular health care services. Nonetheless, utilization of the biomedically based prenatal and labor and delivery services is quite high, with 98% of Fijian women delivering in a hospital or clinic setting. Of particular relevance to women’s health, given the very limited social supports and voice available in traditional settings for ethnic Fijian women, emotional or social distress is often conveyed by somatic idiom. In many cases, the social refraining of distress as embodied allows mobilization of social support to address the problem. Once childbirth occurs, the postpartum period in Fiji is highly culturally elaborated with formally structured postpartum supports sanctioned for the newly delivered mother. By cross-cultural standards, these social supports are unusually intensive, and routinely include mandated extended relief from domestic responsibilities (such as laundry and cooking) as well as from work on the family plantation. Given that a daughter-in-law is generally regarded as a workhorse in her household—women’s work often includes exhausting physical
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labor, such as tending to family root crop plantations without the benefit of automated machinery—this represents a significant commitment on the part of her household to the new mother’s well-being. Relief from household duties is ideally expected to be extended for three to four months; relief from labor on the family plantation is ideally expected to extend for one year. In addition, a caretaker (e.g., the woman’s mother, sister-in-law, or namesake) is typically designated to assist with care of the new mother and her infant. The cultural ideal provides for a new mother to rest, be well-nourished, and nurse her baby. She is shielded from sunlight and observes a number of postpartum restrictions on combing her hair, eating certain foods, and a strict taboo against sexual intercourse. Members of the community routinely prepare food for her household (kabekabe)—a practice which can sometimes continue for months.
Local Explanatory Models of Postnatal Illness in Fiji Traditional Fijian nosology provides for two categories of postnatal illness, na tadoka ni vasucu and cavuka. The latter is phenomenologically described as a severe, psychotic illness following the birth of a baby, and the former is locally formulated as a brief somatic illness in the postpartum. Whereas the phenomenology and postpartum onset of cavuka appear similar to the Western biopsychiatric model of postpartum psychosis, na tadoka ni vasucu does not appear to have DSM-IV (American Psychiatric Association, 1994) or Western folk correlates. Likewise, there are no Fijian correlates of maternity blues or postpartum depression. Na tadoka ni vasucu translates literally into English as “the flu of childbirth” and is a fairly clinically benign, transient illness characterized by non-specific aches and pains (e.g., stomachache, headache, toothache). The Fijian explanatory model ties its etiology firmly to undue physical exertion of a newly delivered mother. Exertion may be due to excessive talking, but is generally formulated as physical exertion from a premature return to household or farming responsibilities. For a variety of reasons, some women return to such responsibilities earlier than the cultural ideal and are then vulnerable to na tadoka ni vasucu. An extremely broad pharmacopoeia of traditionally mixed herbal therapies are used both prophylactically and therapeutically for na tadoka ni vasucu. In addition to such herbal therapy, rest and respite from household responsibilities are required to treat the illness (Becker, 1998). A recent prospective study on postpartum illness in Fiji suggests that postnatal mood symptoms consistent with a major depressive episode are extremely uncommon (N=l, or 1%) compared with the prevalence in other populations (around 8%) (Becker & Cohen, 1997). By contrast, the incidence of na tadoka ni vasucu was relatively more common at 9% (Becker, 1998). Also by contrast, na tadoka ni vasucu is clinically benign and not associated with the morbidity and mortality of major depressive illness. Both the mood symptoms and the episodes
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of na tadoka ni vasucu that were reported in this study were significantly associated with dissatisfaction with social supports. Interestingly, the majority of respondents in this study were concerned about developing na tadoka ni vasucu whereas only 9% actually suffered an episode. Given the concrete ways in which a general concern with na tadoka ni vasucu sets high community expectations for social supports for postpartum women and mobilizes supports directly when a woman develops this illness, the community concern with this illness appears to contribute to unusually intensive social supports for postpartum Fijian women (Becker, 1998). The association between dissatisfaction with social supports in the postpartum and mood symptoms suggests that any mechanism that enhances social supports might reduce mood symptoms in the postpartum. Because of the low incidence of postpartum depression in this sample, it is tempting to speculate that the concern with preventing and treating na tadoka ni vasucu in the postpartum actually attenuates mood disturbance in Fiji.
Using Traditional Responses to na tadoka ni vasucu to Support the Mental Well-being of Postpartum Women in Fiji At first it appears somewhat paradoxical that, in clinical terms, a relatively benign and transient disorder such as na tadoka ni vasucu generates such a great deal of attention and concern among postpartum women. A recent study showed that, whereas the incidence of na tadoka ni vasucu was only 9%, the majority (58%) of postpartum women surveyed reported worrying that they would be affected by the illness and 94% planned to take medication to prevent or treat it. Na tadoka ni vasucu not only serves as a culturally sanctioned idiom of distress for postpartum women who are having difficulty finding necessary supports for themselves and their infants, but indexes a community moral standard about the importance of supporting women and their infants during this critical period. Intensive and structured community and family supports likely enhance the mental well-being of postpartum women and probably have additional indirect health benefits for their infants as well. In addition to playing an important role in potentially preventing puerperal illness, the rapid identification of cases of na tadoka ni vasucu and subsequent mobilization of material and emotional supports allows for resolution of distress and any deficits in social supports (Becker, 1998). Although it appears that postpartum depression is relatively rare in Fiji, the potential risks to mother and infant are substantial when it does occur. Moreover, the data suggest that na tadoka ni vasucu affects a sizeable percentage of postpartum women in Fiji. Given the rapid economic and social change currently underway in Fiji in the context of its greater participation in the global economy, traditional supports for women are at risk of eroding, particularly as economic pressures relocate families away from extended kin groups. Therefore, it is probable that, in the future, Fijian women will be at an increased risk of inadequate social supports in the postpartum. Given the apparently protective nature of social
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supports against postpartum illness, Fijian women will possibly be at increased risk for postpartum depression as well. Unfortunately, case identification is problematic insofar as depressed mood and its associated neurovegetative symptoms are not locally formulated, expressed, or identified as illness in Fiji. Thus, there is little opportunity to respond to postpartum depression when it does occur because individuals may not present for treatment and the already overtaxed primary health care providers may not readily identify cases. However, if, despite substantial limitations in treatment resources for mental illness in Fiji (i.e., one mental health hospital and one or two psychiatrists in the country), cases of postpartum depression were identified, a number of resources could potentially be mobilized to treat and follow women with postnatal mood symptoms. For example, district nurses who supervise maternal and child health care could dispense medication and monitor treatment response as well as a depressed mother’s ability to care for her baby. More importantly, to the degree that traditional postpartum social supports are undermined by ongoing economic and social change, public health agencies could develop services that reproduce and replace traditional supports: home visits by district nurses or experienced mothers could be arranged to instruct new mothers on breastfeeding and infant care, meals could be provided, and volunteers could be identified to help a new mother with errands and household chores. Such services and supports could be provided as outreach services by health care personnel or could be mobilized via the community meetings typically held in each village. The strong sentiments that support the protection of newly delivered mothers could be strategically mobilized to encourage family members to provide support for a new mother and infant as well. Finally, women reporting to maternal-child health nurses for their six week postnatal check and for child growth monitoring could be screened for mood symptoms with a simple questionnaire which would include an inquiry regarding whether or not they have suffered an episode of na tadoka ni vasucu (which is correlated with a major depressive episode).
CHINESE TRADITIONAL POSTPARTUM CUSTOMS Chinese tradition stipulates that the first month after delivery is a vulnerable period when the new mother and her newborn need special attention, protection, and assistance. This postpartum vulnerability is grounded in the ethnomedical belief that defines pregnancy as metaphysically hot (zao) and the postpartum period as metaphysically cold (liang) (Schott & Henley, 1996).1 While the exact origin of 1
In Chinese tradition, harmony in the natural world and the body is regulated by a balance between two vital opposing energies known as Yin and Yang. Yang is regarded as hot, male, and positive while Yin is cold, dark and female. Imbalance between Yin and Yang is fundamental to the pathogenesis of many diseases. Hence, the aim of the traditional Chinese medical practitioner is to prevent and rectify the imbalance within the body.
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this belief is unclear, it may be related to the fact that parturient women often lose a substantial amount of blood during the delivery. Hence, a postpartum body is generally regarded as weak and susceptible to further injury in Chinese culture (Pillsbury, 1978). To promote recovery and to protect the weakened body from further insult, Chinese postpartum women are required to comply with a constellation of behavioral taboos and dietary proscriptions generally known as zuoyue, which literally means “sitting the month” or “resting the month” (Cheung, 1997). During zuoyue, rest and convalescence are emphasized, and Chinese women who observe this custom must stay at home as much as possible. The mandated seclusion is associated with the belief that exposure to draughty or cold weather weakens the devitalized body. Apart from the fact that draughty and cold weather are metaphysically cold and hence damaging in the postpartum, it is commonly believed that the pores on the surface of the body open up after delivery, providing points of entry for the wind and pathogens. Even in contemporary times, a majority of women are concerned that the exposure to wind and coldness during the puerperium might cause rheumatism, headache and life-long ill health (Pillsbury, 1978; Eisenbruch, 1983; Cheung, 1997). Thus, as far as possible, women avoid washing hands with cold water, bathing, and shampooing in the first postpartum month. The fear of metaphysical coldness also shapes postpartum dietary customs. Postpartum women are not allowed to eat fruit or green leaves, as well as many other foods that are regarded as metaphysically cold and hence health damaging. To revitalize the weakened body, families traditionally prepare nutritious food and herbal remedies to tone the body. For instance, it is felt that postpartum women should consume a chicken each day. In Hong Kong and southern Chinese provinces, pig trotters (feet), ginger and eggs are stewed in black vinegar to make a body-strengthening and wind-exorcising tonic. Apart from the ethnomedical concern about coldness and vulnerability, recently confined women, because of their lochial discharge, are viewed as contaminating. As such, new mothers are prohibited from eating with their families, visiting other houses, and having sexual intercourse with their husbands. Although these restrictions may appear to be extreme, they are effective means to safeguard the mother from inappropriate sexual demands from the husband, especially in a patriarchal society. The ending of the first postnatal month is demarcated by a birthday celebration banquet (munyuejiao, “a complete month birthday party”) when the new mother is offered gifts and congratulations from her relatives. This marks the end of the vulnerability period and at the same time demarcates the resumption of usual household duties. The promotion of a full month of mandated seclusion and convalescence is supported by another postpartum custom called peiyue, which literally means “attending” or “accompanying the month.” Peiyue care requires an elder female
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relative, usually the mother or the mother-in-law, to chaperone the new mother in the first month after childbirth. Traditionally, the peiyue relative helps the new mother with domestic duties and relieves her from the obligations of looking after her husband and the elder children. The new mother can hence focus on her new baby and recuperation. In addition, if the new mother is inexperienced with childcare, the peiyue relative is able to assist and to coach the new mother on childcare matters. Peiyue care and zuoyue rituals are interdependent. While zuoyue defines postpartum vulnerability by means of symbolic rituals and seclusion, peiyue structures the support and protection that the new mother needs for her transition into motherhood. The practice of zuoyue, however, requires the assistance of the peiyue relative. Without the peiyue relative, the new mother would be burdened with her usual household duties and would not be able to comply with the zuoyue rituals and restrictions. As a corollary, the peiyue relative supervises the new mother on what should and should not be done during the postpartum period, reinforcing the zuoyue customs. Hence, the two complementary practices work together to shape vulnerability and structure the support that is much needed for postpartum women. The relationship between traditional postpartum customs and better psychological well-being and lower risk of depression in postpartum is best illustrated by a study conducted by one of the authors (DL). In a prospective longitudinal study, Lee (2000) followed up a representative sample of 959 women, examining the practice of traditional postpartum customs in the first postpartum month (Table 1). The study also measured the level of depression using the Beck Depression Inventory, a well-established self-report rating scale. The results showed that most traditional postpartum customs are still commonly practiced by contemporary Chinese women in Hong Kong. About 79% of women were attended by a designated person for at least more than 4 hours per day (peiyue). What is more,
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women who did not practice peiyue in the first month after delivery reported significantly higher levels of depression at three months postpartum (Figure 1). This association remains significant even when adjusting for potential confounders such as social class and preexisting marital relationship. Using the DSM-IV criteria of major and minor depression to define caseness, they found that women who did not observe peiyue were four times more likely to suffer postpartum depression.
Remaking traditional postpartum customs in modernity A variety of social forces continue to reinforce the practice of postpartum convalescence, mandatory seclusion, dietary proscriptions and familial assistance in contemporary Chinese societies. Inherent to the traditional postpartum custom is the health belief that non-adherence to zuoyue practice will cause chronic headache, rheumatism, and ill health for the rest of a woman’s life (Eisenbruch, 1983). As long as Chinese women and their families believe in this principle, it is likely they will continue to practice the customs, albeit with inconvenience or modifications. It is also interesting to note that contemporary magazines on childbearing continue to publish articles on various aspects of zuoyue and peiyue rituals (Ho, 1997; Ma, 1998; Leung, 1998). One local private hospital even prepares ginger vinegar and sells it to the parturient (Joey, 1999). To continue to have a
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structured rite of passage to motherhood reflects, to a certain extent, the collective fear of future ill health as well as the needs of contemporary Hong Kong women to enjoy a well-defined period of convalescence after childbirth. On the other hand, with modernization and urbanization, traditional postpartum customs are not practiced with the same intensity as before. In contrast to the past, peiyue and zuoyue are no longer universally practiced. As the above-mentioned data suggest, a small proportion of local women abandon all postpartum customs, and a larger portion of women may practice the traditional customs unevenly; traditional customs that conflict with the demands of a modern lifestyle are readily modified and remade. For instance, while originally the peiyue relative stayed with the new mother, this arrangement has been adapted to meet the limitations of modern city life. As the peiyue relative often has her own job and family to look after, she may only pay daytime visits to assist the new mother with household chores, meal preparation, and childcare. Sometimes, because of geographic separation, the new mother may move back to stay with her natal family, instead of asking the mother to visit every day. When elder members of the family are not available, the new mother may hire a maid who specializes in peiyue to look after the household chores and to prepare the tonics for postpartum recuperation. Like peiyue practices, zuoyue practices have also been adapted to meet the realities of modern life. Now, rubber gloves may be worn, or warm water used if the woman is required to wash dishes. In Hong Kong, as the summer is hot and humid, most women will not refrain from bathing or washing their hair for an entire month. Hence, they may ensure that the bathing water is hot enough, or add ginger and herbs to the bathing water. Some women also wipe their bodies with wet towels, as a compromise. The modifications of traditional cultural practices may have mixed, and even opposite effects on maternal postpartum well-being. Simplification, or even annulment, of outdated rituals releases modern women from suffocating rituals, which may no longer serve a practical purpose in modern society.2 On the other hand, preservation of functional rituals, such as peiyue in Chinese society, can have an overall positive effect on a new mother’s health. It is possible that the simplification of some postpartum customs heralds a total collapse of traditional cultural practices and that eventually even the protective and functional rituals that safeguard postpartum social support will be stripped away. Thus, the changes in traditional practices or in patterns of adherence to them remain a distinctly worrisome possibility. Efforts to identify ways in which the benefits of these traditions can be preserved will be an important public health priority in the coming years. 2
For instance, when hygiene was poor, bathing with unclean water (e.g., from a contaminated well) might cause postpartum maternal infection. Forbidding bathing could be a simple and effective means of preventing puerperal wound infection.
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Reinventing Postpartum Customs Traditional postpartum customs, given careful planning, can be adapted as an inexpensive and effective preventive program for postpartum depression. The subsequent discussion will use the practice of peiyue as an example to demonstrate how it can be put into practice. Although the majority of Hong Kong women are accompanied by peiyue relatives in the first postpartum month, about one fifth of women, for a variety of reasons, are not, and they are at a particularly high risk of depression in the postpartum period. Therefore, during pregnancy, medical staff could inquire of mothers about how postpartum customs are to be arranged. Such a “social amniocentesis” could help to identify women who are at high risk of postpartum depression as a result of weak social support. Medical staff could then work with these women to identify relatives or friends who can serve as peiyue helpers. Close monitoring may also be required after delivery to detect if postpartum depression develops. In addition, the principles of peiyue can be applied to women who have no relatives or friends to provide postpartum care and support. Such women are increasingly common as an increasing numbers of young couples relocate to new towns, and are separated from their extended families. For example, after reunification with the People’s Republic of China, there has been a steady influx of internal immigrants from various parts of the country to Hong Kong. Even if these women can be identified during their pregnancies, arranging effective postpartum support can be a substantial challenge. This is largely because few medical or social welfare personnel can provide adequate time to support these socially marginalized mothers in addressing their day-to-day problems and in managing their household duties. However, these difficulties could potentially be overcome if the health care and welfare system were to mobilize the traditional resources available in the community. As the study by D. Lee (2000) shows, a small but significant portion of new mothers in Hong Kong are assisted by a peiyue maid. These helpers are maids-cum-teachers, who are employed by recently delivered women who do not have suitable relatives to “do the month.” Peiyue maids prepare traditional tonics, relieve domestic duties, and coach mothers who are inexperienced in childcare skills. Those who are live-in also assist childcare in the evenings, so that the exhausted mothers can get sufficient rest. Most peiyue maids are also knowledgeable in traditional postpartum customs, and are able to clarify confusion about cultural practices. These maids-cum-teachers therefore provide surrogate peiyue care and support when the traditional family support system fails. By providing emotional, social, instrumental and informational support, these maids could potentially be an effective means to prevent postpartum depression among mothers who are socially disadvantaged and marginalized. In other words, an alliance between allopathic health care personnel and indigenous folk resources could substantially improve the health of postpartum women in China.
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Finally, traditional postpartum customs may also be relevant in the prevention of postpartum depression in Western societies. Although well-publicized in academic and lay literature, the notion that postpartum customs in developed societies have disappeared is very often overstated. For instance, practices similar to peiyue can still be found in many parts of America and Europe. It is not uncommon for a new mother to arrange for a close female relative or a professional doula to provide some help in the early postpartum period. However, probably because there is no general consensus in the culture that the postpartum period is vulnerable and support should be regularly arranged and structured by the family, the postpartum support rituals are often shorter and less well-defined in developed societies. It would thus be interesting to explore whether postpartum rituals or customs could be developed for application in industrialized societies. For example, could health care professionals legitimize the postpartum period as a vulnerable time for new mothers? Could health care professionals play a proactive role in encouraging extended family members to support the new mother for a complete month (or longer), not just for a few days? And when no suitable family member can be identified and there is high risk of postnatal depression, could home visitation by trained personnel be supported for a few weeks to help the otherwise isolated and resource-poor mother? A trial of such interventions would be worth exploring for the prevention of the economic and social costs of postpartum depression.
DISCUSSION Mental and neuropsychiatric illness constitutes 11.5% of the global burden of disease as measured by disability-adjusted life years, and there is evidence that globalization is associated with increased mental illness (Kleinman, 2001). Specifically, it is clear that shifts in residential patterns and work activities that accompany economic changes in developing societies may substantially undermine traditionally available social supports for women in the postpartum period. Unfortunately, there is an extreme shortage of mental health care resources throughout the developing world, and there is no clear evidence that an integration of mental health care delivery into primary care delivery systems is a successful strategy in adequately addressing mental illness in underserved areas (Cohen, 2001). Therefore, further investigation is needed to determine the best means of identifying and responding to mental illness in the developing world. In this paper, we have described two cultural case studies of indigenous means of mobilizing formally structured social supports for postpartum women. One potential means of addressing postpartum depression is to identify and harness effective indigenous models of responding to it. Another means may be to generalize the usefulness of social supports in attenuating postpartum distress in some
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social contexts and develop locally-customized appropriate means of providing social supports to apply in a variety of other contexts. This is particularly pressing in settings of rapid social change that threaten to undermine traditions that support postpartum women (Zelkowitz, 1996). Although prevalence rates vary, postpartum illness is a global mental health problem of significance to women and their infants. The case examples from Fiji and Hong Kong suggest that traditional practices providing social support to postpartum women may attenuate postpartum distress or even reduce the risk of developing postpartum depression. Further investigation is necessary to determine whether enhancement of locally sanctioned social supports is effective in the prevention or attenuation of postnatal illness in areas undergoing rapid social change and whether exportation of similar locally-customized supports could be developed for application in other social contexts. However, the easy availability and low-cost nature of such interventions make them appealing public health strategies for addressing postnatal illness in areas in which health care services are scarce and psychotherapeutic and pharmacologic treatments for postnatal depression are limited. Finally, the strong association between inadequate social supports and postpartum illness in Western societies suggests that importing models from traditional societies for structuring postpartum social supports in locally appropriate ways may be an effective strategy for reducing the risk of postpartum illness in more resource-rich nations as well.
REFERENCES American Psychiatric Association (1994). Diagnostic and statistical manual of mental disorders, fourth edition. Washington, DC: Author. Appleby, L., Mortensen, P. B., & Faragher, E. B. (1998). Suicide and other causes of mortality after post-partum psychiatric admission. British Journal of Psychiatry, 173, 209–211. Barnet, B., Joffe, A., Duggan, A. K., Wilson, M. D., & Repke, J. T. (1996). Depressive symptoms, stress, and social support in pregnant and postpartum adolescents. Archives of Pediatric and Adolescent Medicine, 150, 64–69. Beck, C. T. (1996). A meta-analysis of predictors of postpartum depression. Nursing Research, 45, 297–303. Becker, A. E. (1995). Body, self, and society: The view from Fiji. Philadelphia: University of Pennsylvania Press. Becker, A. E. & Cohen, L. S. (1997). Social support as risk modulator of postpartum mood disturbance in Fiji [CME Syllabus & Proceedings Summary]. American Psychiatric Association Annual Meeting. Becker, A. E. (1998). Postpartum illness in Fiji: A sociosomatic perspective. Psychosomatic Medicine, 60, 431–438. Cheung, N. F. (1997). Chinese zuo yuezi (sitting in for the first month of the postnatal period) in Scotland. Midwifery, 13, 55–65. Cohen, A. (2001). The effectiveness of mental health services in primary care: The view from the developing world. Geneva: World Health Organization.
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Cooper, P. J., Tomlinson, M., Swartz, L., Woolgar, M., Murray, L., & Molteno, C. (1999). Post-partum depression and the mother-infant relationship in a South African peri-urban settlement. British Journal of Psychiatry, 175, 554–558. Dankner, R., Goldberg, R. P., Fisch, R. Z., & Crum, R. M. (2000). Cultural elements of postpartum depression. Journal of Reproductive Medicine, 45, 97–104. Davidson, J. & Robertson, E. (1985). A follow-up study of post partum illness, 1946–1978. Acta Psychiatrica Scandinavica, 71, 451–457. Eisenbruch, M. (1983). ‘Wind illness’ or somatic depression? A case study in psychiatric anthropology. British Journal of Psychiatry, 143, 323–326. Ghubash, R. & Abou-Saleh, M. T. (1997). Postpartum psychiatric illness in Arab culture: Prevalence and psychosocial correlates. British Journal of Psychiatry, 171, 65–68. Gjerdingen, D. K. & Chaloner, K. M. (1994). The relationship of women’s postpartum mental health to employment, childbirth, and social support. Journal of Family Practice, 38, 465–72. Gordon, R. E. & Gordon, K. K. (1960). Social factors in the prevention of postpartum emotional problems. Obstetrics and Gynecology, 15, 433–438. Harkness, S. (1987). The cultural mediation of postpartum depression. Medical Anthropology Quarterly, 1, 194–209. Ho, Y. M. (1997). Zuoyue taboos. Baby Magazine (Hong Kong), 54, 86–88. Jiminez, M. H. & Newton, N. (1979). Activity and work during pregnancy and the postpartum period: A cross-cultural study of 202 societies. American Journal of Obstetrics and Gynecology, 135, 171–176. Jinadu, M. K. & Daramola, S. M. (1990). Emotional changes in pregnancy and early puerperium among the Yoruba women of Nigeria. International Journal of Social Psychiatry, 36, 93–98. Joey (1999). Alternative service of the Union Hospital. Baby Magazine (Hong Kong), 56, 76–78. Kelly, J. V. (1967). The influences of native customs on obstetrics in Nigeria. Obstetrics & Gynecology, 30, 608–612. Kit, L. K., Janet, G., & Jegasothy, R. (1997). Incidence of postnatal depression in Malaysian women. Journal of Obstetric & Gynaecological Research, 23, 85–89. Kleinman, A. (2001). A psychiatric perspective on global change. Harvard Review of Psychiatry, 9, 46–47. Kumar, R. (1994). Postnatal mental illness: a transcultural perspective. Social Psychiatry & Psychiatric Epidemiology, 29, 250–264. Lee, D. T. S. (2000). Postnatal depression in Hong Kong Chinese. Unpublished doctoral dissertation, The Chinese University of Hong Kong. Lee, D. T. S., Yip, S. K., Chiu, H. F. K., Leung, T. Y. S., Chan, K. P. M., Chau, I. O. L., Leung, H. C. M., & Chung, T. K. H. (1998). Detecting postnatal depression in Chinese women: Validation of the Chinese version of the Edinburgh postnatal depression scale. British Journal of Psychiatry, 172, 433–437. Lee, F., Han, C., Wang, F., Tsui, L., Zhang, M., & Jing, F. (1997). An analysis of postnatal depressive symptoms and perinatal factors. Chinese Mental Health Journal, 11, 300–301. Leung, F. H. (1998). How to spend your zuoyue days. Baby Magazine (Hong Kong), 55, 12–15. Ma, Y. Y. (1998, 1 March). An overview of the taboos in the first postnatal month. Ours Magazine (Hong Kong), 115, 30–37. Marcenko, M. O. & Spence, M. (1994). Home visitation services for at-risk pregnant and postpartum women: A randomized trial. American Journal of Orthopsychiatry, 64, 468–478. Murray, L. & Cooper, P. J. (1997). Postpartum depression and child development. Psychological Medicine, 27, 253–260. O’Hara, M. W. (1986). Social support, life events, and depression during pregnancy and the puerperium. Archives of General Psychiatry, 43, 569–573.
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O’Hara, M. & Swain, A. M. (1996). Rates and risk of postpartum depression: A meta-analysis. International Review of Psychiatry, 8, 37–54. Okano, O. T. (1989). Clinicoendocrine study of the maternity blues. Mie Medical Journal, 39, 189–200. Okano, T., Murata, M., Masuji, F., Tamaki, R., Nomura, J., Miyaoka, H., & Kitamura, T. (1996). Validation and reliability of Japanese version of EPDS. Archives of Psychiatric Diagnostics and Clinical Evaluation, 7, 525–533. Paykel, E. S., Emms, E. M., Fletcher, J., & Rassaby, E. S. (1980). Life events and social support in puerperal depression. British Journal of Psychiatry, 136, 339–346. Pillsbury, B. L. K. (1978). “Doing the month”: Confinement and convalescence of Chinese women after childbirth. Social Science & Medicine, 12, 11–22. Schott, J. & Henley, A. (1996). Culture, religion and childbearing in a multiracial society. Oxford: Butterworth. Stern, G. & Kruckman, L. (1983). Multi-disciplinary perspectives on postpartum depression: An anthropological critique. Social Science & Medicine, 17, 1027–1041. Stewart, S. & Jambunathan, J. (1996). Hmong women and postpartum depression. Health Care for Women International, 17, 319–330. Stuchbery, M., Matthey, S., & Barnett, B. (1998). Postnatal depression and social supports in Vietnamese, Arabic and Anglo-Celtic mothers. Social Psychiatry & Psychiatric Epidemiology, 33, 483–490. Zelkowitz, P. (1996). Childbearing and women’s mental health. Transcultural Psychiatric Research Review, 33, 391–412. Zheng, S., Huang, T., & Zou, X. (1996). Evaluation of the Edinburgh Postnatal Depression Scale and analysis of the findings. Journal of Clinical Psychological Medicine, 6, 236–237.
About the Contributors
SARAH ACLAND, M.D. has worked in psychiatry since 1970. She came to the United States in 1975 where she completed her training at the University of Louisville, Kentucky, joined its faculty for 4 years, and then went into private practice. Finding this work unsatisfying, Dr. Acland went to Nepal in 1990 to work for United Mission to Nepal, a multi-national, multi-disciplinary, multi-denominational, and multi-lingual mission organization. She was funded by the Presbyterian Church which is based in Louisville. In 1995, she became the director of the mental health program of UMN. Under her leadership, and in collaboration with the Department of Psychiatry at Tribhuvan University in Kathmandu, the mental health program expanded and in-country training programs for psychiatrists and clinical psychologists (the first in Nepal) were developed. She and her colleagues were also effective in their lobbying efforts to develop national mental health policy and law. After 10 years in Nepal, Dr. Acland returned to Louisville where she is now working in a community mental health program. JULIO ACHA ALBÚJAR, M.D. is a psychiatric consultant for Socios En Salud and facilitates a weekly psychotherapy group for patients with MDR-TB. He received his Medical Degree at Trujillo National University in Northern Peru, did his psychiatric residency at the Honorio Delgado – Hideyo Noguchi National Mental Health Institute, and received a degree in Psychiatry from the Peruvian University Cayetano Heredia. In addition, he completed a one-year program at the School of Business Administration (ESAN-PERU) in the Management of Hospitals and Clinics. Dr. Acha is the former Executive Director of the Villa Imago Clinic in Chorrillos, Lima. He served as the General Secretary of the Peruvian Psychiatric Association from 1995–96 and 1999–00, and currently is the Treasurer of the Association (2001–02). He has a private psychiatric practice in Lima, Peru. 237
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ANNE BECKER, M.D., Ph.D. received her medical training at Harvard Medical
School and completed her psychiatric residency at the Massachusetts General Hospital. She also received a doctoral degree in anthropology from the Harvard Graduate School of Arts & Sciences. Dr. Becker is currently Assistant Professor of Medical Anthropology and of Psychiatry at Harvard Medical School and Director of the Adult Eating and Weight Disorders Program at Massachusetts General Hospital where her research interests include disordered eating and body image in its cross-cultural context. Her book, Body, Self, and Society: The View from Fiji, explores body image and its cultural context. Her most recent research has documented the dramatic increase in eating disorders symptoms among ethnic Fijian schoolgirls in a setting of rapid social change. DEBORAH L. BILLINGS, Ph.D. is a Senior Research Associate at Ipas, an interna-
tional sexual and reproductive health and rights organization based in 14 countries around the world. Her research focuses on understanding and improving services related to abortion and postabortion care and she has worked with health systems in Mexico, Bolivia, Ghana, Peru, South Africa, and Uganda on these issues. Dr. Billings conducted her doctoral research in Guatemala and southern Mexico with Guatemalan refugee women where she analyzed the process of political organizing in exile. Currently, she is also as an Adjunct Assistant Professor in the Health Behavior and Health Education Department of the University of North Carolina School of Public Health and is based in Mexico City. DORIS F. CHANG, Ph.D. is a clinical psychologist who received her degree from
the University of California, Los Angeles. She is currently a NIMH postdoctoral fellow in Culture and Mental Health Services with the Department of Social Medicine at Harvard Medical School. Dr. Chang’s clinical and research interests include Asian American mental health, community mental health initiatives, psychological disorders in general medical settings, and cross-cultural issues in psychiatric diagnosis and treatment. She has conducted fieldwork in the People’s Republic of China, on the assessment of psychological disorders in primary care, and in particular, the cultural validity of neurasthenia. Current research interests include the content and process of ethnic-specific services targeting domestic violence in Asian American communities as well as the identification and treatment of depression in Chinese primary care patients. Dr. Chang is also a staff psychologist at South Cove Community Health Center in Boston’s Chinatown. ALEX COHEN, Ph.D. is an anthropologist who is currently an Instructor in the
Department of Social Medicine, Harvard Medical School, and a co-director of
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the University of Melbourne–Harvard Medical School Leadership Program in International Mental Health. His interest in cultural psychiatry and mental health dates back to his graduate work at the University of California, Los Angeles, when he conducted fieldwork with mentally ill homeless persons and published critiques of the cross-cultural research on schizophrenia. Since arriving at Harvard in 1996, he has written reports for WHO on the mental health of indigenous peoples and the effectiveness of mental health services in primary care, co-authored articles about issues in international mental health with Arthur Kleinman, continued to write about his ethnographic work in Los Angeles, lived for two months in Geel, Belgium, the site of what is probably the oldest mental health program in the world, and coordinated the World Mental Health Project. DALIA GUERRA ECHEVARRIA is a nursing student at the San Felipe Nursing School,
affiliated with the Peruvian University Cayetano Heredia in Lima, Peru, where she began her studies in 1992. She was born and raised in Carabayllo, a Northern district of Lima. As part of her field studies, she worked at a number of clinics in Lima, including the San Felipe Clinic, the Edgardo Rebagliatti Martín Hospital, the Police Hospital, Cayetano Heredia Hospital, the City and Country Health Center, the Leonicio Prado Health Center, and some grammar schools. She has been working at Socios En Salud since December 1997, as a health promoter, nurse, coordinator of thorax surgery, and coordinator of the psychotherapy group for MDR-TB patients. She is also responsible for the coordination of services for MDR-TB treatment within San Juan de Lurigancho, a district of Lima. ARTHUR M. KLEINMAN, M.D. is the Maude and Lillian Presley Professor of
Medical Anthropology and Professor of Psychiatry at the Harvard Medical School, where he chaired the Department of Social Medicine from 1991 to 2000. He is also Professor of Social Anthropology at Harvard University. Dr. Kleinman’s research includes: international mental health; cross-cultural studies of depression; the experience of chronic illness; the anthropology of social suffering; and social health policy concerning the overlap of social and health problems including substance abuse, violence and trauma; and ethnicity and health. He has conducted research in Chinese society since 1968. Dr. Kleinman directed the World Mental Health Report and was a member of the Steering Committee of the American Psychiatric Association-National Institute of Mental Health Taskforce on Culture and Psychiatric Diagnosis, and Co-Chair of the Committee on Culture, Health and Human Development for the Social Science Research Council. He has authored more than 175 articles and 5 books, edited or co-edited 17 volumes, and founded the journal Culture, Medicine and Psychiatry which he edited for a decade. Dr. Kleinman has been
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a Guggenheim Fellow and a Fellow of the Center for Advanced Study in the Behavioral Sciences. Since 1978, Dr. Kleinman has directed an NIMH-funded Postdoctoral Training Program in Clinically Applied Anthropology.
JOAN KLEINMAN, M. A. is a Research Associate in the Department of Anthropology, Harvard University. She has delivered lectures and seminars on medical anthropology in China, at the University of Tarragona (Spain), the University of Montana, the University of Helsinki, and the University of Zurich. She is the co-author of several research and review articles on the relationship of moral and social processes in Chinese society. At present, she is collaborating on a research project concerning the end-of-life care of the terminally ill elderly in Shanghai. DOMINIC T.S. LEE, M.D. is an associate professor of Psychiatry at The Chinese University of Hong Kong. He is also a lecturer in the Department of Social Medicine, Harvard Medical School. He co-directs the first postpartum depression screening program in South East Asia. He has conducted research on Chinese perinatal and reproductive mental health problems, using both epidemiological and ethnographic methods. His latest research focuses on the role of traditional postpartum customs and cultural institutions in shaping the outcome of postpartum depression. INDA SAENZ, M.A. is a professor in the Psychology Department of the National Autonomous University of Mexico (UNAM), where she also finalized her Master’s Degree in Clinical Psychology. She worked for 6 years in the Comité del DF de Ayuda a Refugiados Guatemaltecos in the mental health area, developing diverse projects in Mexico City, the camps of southeastern Mexico and Central America. Ms. Saenz has published numerous articles and presented findings at national and international conferences about the theme of refugees and mental health. BENEDETTO SARACENO, M.D. holds an M.D. degree from the University of Milan, a postdoctoral degree in psychiatry from the University of Parma, and was trained in public health and epidemiology at the Mario Negri Institute, Milan. He has participated as senior scientist and adviser in a dozen Italian and international research projects on psychotropic drug utilization in general practice, psychiatric services evaluation, quality assurance in mental health, and others, taught at the postgraduate level in Latin American universities, lectured in India, and has assisted in the reform of mental health services in South and Central American countries, including Nicaragua, El Salvador, Honduras, Costa Rica, Panama, Brazil, Chile, and Cuba. He has published over 100 scientific articles and co-authored and edited a number of books. For ten years, Dr. Saraceno
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served as Head of the Laboratory of Epidemiology and Social Psychiatry at the “Mario Negri” Institute in Milan. In 1996 he was appointed Programme manager of the WHO special programme, Nations for Mental Health. At present, he is the Director of the WHO Department of Mental Health and Substance Dependence. ANNIKA SWEETLAND is a candidate for a Masters degree in Social Welfare at the
University of California, Berkeley. She received her B.A. from Wesley an University in 1998 where she studied social psychology. Ms. Sweetland has worked in different community-based projects of Partners In Health (PIH) since 1998. She spent a year working with Socios En Salud in which she designed and implemented the psychotherapy group for MDR-TB patients. Upon returning to the U.S., she worked as a full-time case manager at Soldiers Of Health, another community based project affiliated with PIH in Roxbury. MA. As a student, she did her field studies with the Sexual Assault Response Team in the Department of Internal Medicine at Highland Hospital in Oakland, CA, and at the Women’s HIV/AIDS Specialty Clinic of the University of California, San Francisco. She will soon be returning to Lima to help in the expansion of psychosocial services for MDR-TB patients and their families. XU YIFENG, M.D. is currently an associate professor at Fu Dan University School
of Medicine, and the director of the Scientific Research and Medical Education Office at Shanghai Mental Health Center. He graduated from Shanghai Medical University in 1987 (M.B.) and 1990 (M.Sc.), and has served as a clinical psychiatrist and a faculty member in the Department of Psychiatry. He was awarded a fellowship sponsored by the Freeman Foundation to study medical anthropology from 1997–1998 at the Department of Social Medicine at Harvard Medical School. Dr. Xu has conducted research in the areas of medical sociology, cerebral functional image in psychogeriatric patients, and clinical psychopharmacology. He has published more than 30 papers in peerreviewed Chinese journals, written several book chapters, is a co-author of the forthcoming, The Practice of Social Psychiatry, and is currently writing a monograph on medical anthropology. He has also been actively involved in public service. Dr. Xu Yifeng is a member of the Consultative Committee of National Senior Faculty in Psychiatry and, in 2000, was appointed as a member of the National Credentials Assignment Committee of Physicians.
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Index
Alcohol-related problems, 2, 31, 99, 107, 110, 148, 158 Aron, Adrienne, 92–93 Basaglia, Franco and antipsychiatry movement, 194 in Gorizia, 192–194 influences on, 192, 193 institution of psychiatry, 194 and Psichiatria Democratica, 191, 192–195 in Trieste, 201–208 Carabayllo, Peru, 56–57 Chronificatione, 194 Comité del Distrito Federal de Ayuda a Refugiados Guatemaltecos (CDF), 82ff Community mental health, 3, 19, 93–94 in Nepal, 129ff Consumer and family movements, 4, 149; see also Shanghai model, Psychosocial Rehabilitation Association Cost-effectiveness, 9, 11, 14, 34, 46, 47, 49 Das, Veena, 160 Deinstitutionalization: see Trieste Depression: see also Postpartum illness burden of, 2–3 among MDR-TB patients, 58 and refugee women, 90 and suicide, 8–9 treatment guidelines for, 2–3 Directly Observed Therapy Short-course (DOTS), 52–53; see also DOTS-Plus
Disability Adjusted Life Years (DALYs), vii, 1–2 Domestic violence, 68–69, 74, 102, 107, 110, 158 Drug abuse, 31 DOTS-Plus, 53–54 Emargination, 194 Epilepsy, 2, 9, 142, 151, 158 Ethnography, 10, 12–14, 17 Evaluation, 11–15 of community mental health program in Nepal, 139–140, 143–149 of group psychotherapy in Peru, 61–62, 77 of literacy programs in India, 178–182 of mental health promoter training, 113–115 of mental health reforms in Italy, 197–200, 210–211 of Shanghai model, 46–49 Excess female mortality in India, 156–157 in Himachal Pradesh, 164 in Rajasthan, 170 Familia Tebeciana, 69–70 Fogarty International Center, 7 Foyle, Marjorie, 129 Gender and mental health, India, 157–159 Group psychotherapy for tuberculosis patients, 54–56 for MDR-TB patients, 56–78 as model for community mental health, 16 Guatemala civil war, 81–82, 85–87
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Index
Lifton, Robert Jay, 92 Lira, Elizabeth, 93 Literacy female, 154 among Guatemalan refugee women, 98, 100ff, 111, 114 in India, 153, 155–156 literacy efforts 159–160; see also National Literacy Mission and mental health, 176–178 in Nepal, 122, 136 social ills associated with illiteracy, 153 worldwide, 153
Mental health resources (cont.) personnel, 4 non-professional, 36–37, 91, 98–100 volunteers, 47 Mental health services in China 30–34 for Guatemalan refugee women in Mexico City, 94–100 in camps of Southern Mexico, 100–106 in Nepal, 121ff availability of medicine, 133, 142, 144 evaluation of, 139–140, 143–149 funding of, 132–134 need for supervision, 144–146, 150 treatment gap, 141–142 in primary care, 121ff Mental health services research cost effectiveness, 9–10 ethnographic evaluation, 11–14 lack of in low-income countries, 4–5, 9–10 need for evaluation and documentation, 8–9, 10–15, 113–114 Mental health training in camps of Southern Mexico, 103–104, 106–112 impact of, 111–112 in China, 36 in Mexico City, 98–100 in Nepal, 134–136,140–141 Multidrug-resistant tuberculosis (MDR-TB) in Peru, 52–54 patients, 57–58 treatment of adherence, 70–72, 77–78 medication side-effects, 58–59, 6315, 74– 75 regimen, 58 worldwide, 51–52
Martín-Baró, Ignacio, 83 Medication: see Psychopharmacology Mental health community outreach, 136–138 Mental health, India and gender, 157–159 and literacy, 176–178 Mental health resources in China, 28–29 changes in health insurance, 29–30 funding, 4–5 in Nepal, 126–128, 130
National Institute of Mental Health and Neurosciences, 121 National Literacy Mission in Delhi, 174–176 establishment, 160 evaluation of work, 178–185 in Himachal Pradesh, 164–168 in Rajasthan, 170–174 Nations for Mental Health, viii, 6; see also World Health Organization Nervios, 90
Harrington, Barbara, 95 Harwood, Valerie, 149 Health insurance in China, 28–29, 34 Herman, Judith, 92 Himachal Pradesh, 161–164 Human rights, 13 abuses, 3–4 Declarations of Hawaii and Madrid, 3 and lessons of service demonstrations, 15 The Protection of Persons with Mental Illness and the Improvement of Mental Health Care, vii International Monetary Fund, 4 Institute of Medicine (U.S.), 2, 7 Italy mental health legislation, 191–192 psychiatric care, history, 191, 192–193, 201 psychiatric reforms: see also Trieste, psychiatric reforms law 180, 195–197 evaluation of reforms, 197–200 Jena, V.K., 160
Index Nepal demographics, 122 health services, 124–126 mental health infrastructure, 126–127 traditional healers, 127–128 political system, 123 psychiatric epidemiological surveys of, 129– 130 status of women, 123–124 Nepal, Mahendra, 130 Outreach, 12, 39, 94, 136–138 Partners in Health, 53ff Postpartum customs in China, 227–233 peiyue, “attending the month,” 228–233 postnatal taboos, 229 zuoye, “sitting the month,” 228–233 cross-cultural, 222 in Fiji, 224–227 and psychological well-being, 223–224 Postpartum illness cavuka, 225 depression, 20–21 epidemiology, cross-cultural, 221 etiology, 222 na tadoka ni vasucu, 225–227 Postpartum psychosis, 221 Post-traumatic stress disorder, 88 Poverty, 8, 18, 57, 77, 88, 103 Primary care, 18, 121ff Psychiatric rehabilitation: see also Schizophrenia; Shanghai model in China, 27ff in Nepal, 140 social effects of, 9 Psychopharmacology economics of, 10 improvements in, 2 industry, 10, 48 need for regulation, 10 supply of, 12, 125 Purdah, 165, 170–171 Rajasthan, 169–170 Rape, 88–89 Refugees, 8, 17; see also Women, Guatemalan refugees Scheduled Castes, 153, 169
245 Scheduled Tribes, 153, 169 Schizophrenia in China burden of care, 27–29 psychiatric rehabilitation for, 27–49 Sen, Amartya, 215 Sex ratio, India: see Excess female mortality, India Shanghai model community follow-up programs, 36 evaluation of, 46–49 establishment of, 34–36 future of, 47–49 guardian networks, 36–37 mental health services in factories, 36 occupational therapy, 37–38 other services, 38 Psychosocial Rehabilitation Association, 39– 46 Shresta, D.M., 129 Social roots of distress, 8, 12–13 Socios En Salud (SES), 53ff Social conflict effects of, 82–85 mental health consequences, 83–84, 87–90 mental health work, 90–94 Somatization, 89, 99, 224 Stigma mental disorders, 4–5 in China, 28 in Nepal, 143 tuberculosis, 58 Structural adjustment: see World Bank Suicide, 8–9, 29, 31 Surgeon General’s reports, 7 Susto, 90 Testimonio, 92–93, 97 Therapeutic interventions with victims of violence and displacement, 90–94 Traditional medicine, 30, 127–128 Trieste history, 200–201 evaluation of reforms, 210–211 lessons from, 19–20, 211–214 patient assemblies, 203–204 patient cooperatives, 203–204 psychiatric reforms, 201–211 Tuberculosis, 51; see also Multidrug-resistant tuberculosis
246 United Mission to Nepal (UMN), 129ff Upadhyaya, Kapil, 131, 145 Weinstein, Eugenia, 93 Women, 8; see also Postpartum illness; Domestic violence Guatemalan refugees, 17 experiences of rape: see Rape health, 102–103 lack of education, 100–101 lives in the camps, 100–103 mental health issues, 107–108 return to Guatemala, 105–106
Index Women (cont.) in India, 18–19, 153ff in Nepal, 122, 123–124, 127 silence, 87–88 World Bank, 7 The World Development Report 1993, vii World Health Organization Expert Committee, 1, 5 Global Action Plan, viii Mental health initiatives, 6–7 The World Health Report 2001, viii World Mental Health, vii–viii Wright, Christine S., 129
