STRESS IN CHILDREN WITH ASTHMA: COPING ...

STRESS IN CHILDREN WITH ASTHMA: COPING AND SOCIAL SUPPORT IN THE SCHOOL CONTEXT (Revised edition)

IRMA RÖDERr

“Children with chronic diseases are, first and foremost, children”

(Eiser, 1990; p. 5)

“Having asthma is like being forced into a “physical and emotional roller-coaster ride”

(Massie, 1985, p. 14)

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First Edition 2000 © 2000

Irma Röder, Leiden.

Irma Röder, Stress in children with asthma: coping and social support in the school context Thesis Leiden University - With refs. – With Summary in Dutch Health Psychology Series N° 9, Institute of Psychology, Leiden University ISBN 90-9013852-8 Subject headings: primary school children ; asthma ; stress ; coping ; social support Printed by Printpartners Ipskamp, Enschede

Financial support for the printing of the original thesis has been kindly provided by the Faculty of Social Sciences, Leiden University, and the Netherlands Asthma Foundation (NAF). Financial support for the printing of Figure 5.3 has been kindly provided by the Leiden University Fund (LUF)

Revised Edition 2014 © 2014

Irma Röder and Pieter M. Kroonenberg, Leiden

Specific thesis information deleted; Reformatted; Dutch pages deleted; Chapter 7 added. Pieter Kroonenberg is responsible for the editing of the revised edition and the lay-out of the text.

No part of this book may be reproduced in any form by print, photoprint, microfilm, or any other means without written permission from the author Irma Röder.

Please refer to this document as: Röder, I. (2014). Stress in children with asthma: coping and social support in the school context (Revised edition). Leiden: Universiteit Leiden.

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Contents Contents ....................................................................................................................................................... iii

Preface vii

Introduction ................................................................................................................................................... 1 Childhood Asthma ................................................................................................................................ 2 Asthma as a stressor .............................................................................................................................. 3 The ‘Typical Asthma Child’ ................................................................................................................. 4 What Is Special About a Child with Asthma? ....................................................................................... 4 Research Questions ............................................................................................................................... 6 Outline ................................................................................................................................................... 7

Chapter 1 ....................................................................................................................................................... 9 Childhood Asthma and its Psychosocial Consequences ............................................................................... 9 1.1. Introduction .................................................................................................................................... 9 1.2. Description of Childhood Asthma................................................................................................ 10 1.3. Epidemiology ............................................................................................................................... 15 1.4. Management of Childhood Asthma ............................................................................................. 20 1.5. Consequences of Childhood Asthma ........................................................................................... 27

Chapter 2 ..................................................................................................................................................... 53 Stress, Coping and Social Support in Children with Asthma: Theoretical Background............................. 53 2.1. Introduction .................................................................................................................................. 53 2.2. Stress-Coping Models ................................................................................................................. 54 2.3. Conceptualisation and Measurement of Coping and Social Support in Children ........................ 60 2.4. Empirical Support for the Extended Model ................................................................................. 71

iv Chapter 3 ..................................................................................................................................................... 87 Construction of the Questionnaires ............................................................................................................. 87 3.1. Introduction .................................................................................................................................. 87 3.2. Phase I: Construction of a First Version of the Questionnaires ................................................... 87 3.3. Phase II: A Revised Version of the Questionnaires: Results of the Pilot Study .......................... 91 3.4. Phase III: Structure and Reliability of the Questionnaires: Results of the Primary School Study................................................................................................................................ 97 3.5. Phase IV: A Cross-Validation on the Asthma Sample: Results of the Main Study ................... 107 3.6. Conclusion and Discussion ........................................................................................................ 112

Chapter 4 ................................................................................................................................................... 115 A Characterisation of Children with Asthma: Differences and Similarities with Nonasthmatic Children ....................................................................................................................... 115 4.1. Introduction ................................................................................................................................ 115 4.2. Method ....................................................................................................................................... 118 4.3. Results ........................................................................................................................................ 127 4.4. Conclusion and Discussion ........................................................................................................ 131

Chapter 5 ................................................................................................................................................... 135 A Characterisation of Children with Asthma: Individual Differences...................................................... 135 5.1. Introduction ................................................................................................................................ 135 5.2. Conceptual Model and Research Question ................................................................................ 138 5.3. Method ....................................................................................................................................... 139 5.4. Results ........................................................................................................................................ 150 5.5. Conclusions and Discussion ....................................................................................................... 165

Chapter 6 ................................................................................................................................................... 177 General Discussion ................................................................................................................................... 177 6.1. Introduction ................................................................................................................................ 177 6.2. Characteristics of the Study........................................................................................................ 179 6.4. Practical Implications ................................................................................................................. 189 6.5. Recommendations for Future Research ..................................................................................... 190

iv Chapter 7 ................................................................................................................................................... 193 Situational Dependence of Emotions and Coping Strategies in Children with Asthma: A Three-Mode Analysis .................................................................................................................. 193 Abstract ............................................................................................................................................. 193 7.1. Introduction ................................................................................................................................ 193 7.2. Method ....................................................................................................................................... 194 7.3. Results ........................................................................................................................................ 198 7.4. Discussion .................................................................................................................................. 202

Summary ................................................................................................................................................... 203

References ................................................................................................................................................. 211

iv Appendices................................................................................................................................................ 241 Appendix A. A First Version of the Questionnaires ......................................................................... 241 Appendix B. A Revised Version of the Constructed Questionnaires................................................ 243 Appendix C. Oral Instruction of the Stress and Coping Questionnaires for Children ...................... 250 Appendix D. Examples of the Stress and Coping Questionnaire for Children ................................. 252 Appendix E. Parent Questionnaire for Children with Asthma .......................................................... 253 Appendix F. Fit Measures ................................................................................................................. 255 Appendix G. Factor Loadings Coping Items..................................................................................... 256 Appendix I. Test-Retest Correlations ................................................................................................ 262 Appendix J. Descriptives Coping Scales........................................................................................... 263 Appendix K. Intercorrelations Coping Scales ................................................................................... 265 Appendix L Intercorrelations Stress Items ........................................................................................ 266 Appendix M. Descriptives Stress Items ............................................................................................ 267 Appendix N. Factor Loadings Social Support Items ......................................................................... 268 Appendix O. Descriptives Social Support Scales ............................................................................. 269 Appendix P. Intercorrelations Social Support Scales........................................................................ 270 Appendix Q. Factor Loadings and Internal Consistency ‘Coping with Asthma in Daily Life ............................................................................................................................................ 271 Appendix R. Descriptives ‘Coping with Asthma in Daily Life’ ....................................................... 272 Appendix S. Correlations between Predictor Variables ................................................................... 273 Appendix T. Results of Hierarchical Multiple Regression Analyses (Specific Level) ..................... 283 Appendix U. Suppressor Variables ................................................................................................... 287 Appendix V Summary Of Regression Analysis-Variables Not In Equation .................................... 289 Appendix W. Univariate Tests .......................................................................................................... 297

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Preface This book is a revised version of my original thesis. The majority of the text presented here is unchanged compared to the original. However, several parts have been added and deleted. All the materials specific to a thesis have been deleted, such as the announcement of the ceremony, the Dutch summary and my curriculum vitae. Several chapters have been published in a revised form and the bibliographic information is listed below. In addition, some secondary analyses using threemode analysis were carried out in collaboration with Pieter Kroonenberg. The text of this article is added in its prepublication form as Chapter 7. It was unfortunately not possible to update the materials in this book with more recent research, but it is hoped that the content will still be useful to researchers working in the field. Information about the three-mode analysis in Chapter 7 can be obtained from Pieter Kroonenberg ([email protected]). Irma Röder - Leiden, 6 November 2014 Papers published on the basis of this thesis Boekaerts, M., & Röder, I. (1999). Stress, coping, and adjustment in children with a chronic disease: a review of the literature. Disability and Rehabilitation, 21, 311 – 337. Röder, I., Kroonenberg, P.M., & Boekaerts M. (2002). The stress and coping questionnaire for children (School version and Asthma version): Construction, factor structure, and psychometric properties. Psychological Reports, 91, 29 – 36. Röder, I., Kroonenberg, P.M., & Boekaerts M. (2003). Psychosocial functioning and stressprocessing of children with asthma in the school context: differences and similarities with children without asthma. Journal of Asthma, 40, 777 - 787. Kroonenberg, P.M., & Röder, I. (2008). Situational dependence of emotions and coping strategies in children with asthma. A three-mode component analysis. In Shigemasu, K. (eds.). New trends in psychometrics. (pp. 191 – 198).Tokyo: Universal Academy Press. (available from www.researchgate.net/profile/Irma_Roeder/publications) Röder, I., Boekaerts, M., & Kroonenberg, P.M. (2014). The stress and coping questionnaire for children (school-version and asthma-version) - background and questionnaire . Internal report. Institute of Education and Child Studies, Leiden University, Leiden, The Netherlands (available from www.researchgate.net/profile/Irma_Roeder/publications)

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Introduction “I know I have asthma, but I don’t think about it so much. I do have to take my medication every day, and I don’t like this. But I also don’t like brushing my teeth every day, it’s also something I have to do. I also need to be careful with some kinds of food, and I am allergic to dust. I find it very difficult to pay attention to it all the time, but luckily my parents help me with that. I am often off school ill, especially during the autumn and often when it’s my birthday. But my friends still come to visit me, and when I am ill I am allowed to watch television as much as I want. So being ill is not always that boring.” (Sophie, 10 years old)

“Everybody is bullied sometimes, but I am bullied more often because I have asthma. They call me names, like ‘wheez kid’. And that’s so mean, because I can’t help it having asthma. I am allergic to grass, so it is very frustrating not to be able to join my friends playing soccer. I am also often off school ill, and I have problems catching up with school work. My teacher helps me a lot, but it gives my classmates the impression that I am not that smart.” (Tom, 11 years old)

Both of the narratives above are by children with asthma. Which one could be classified as the ‘typical asthma child’, Sophie, who is able to handle problems due to her asthma and feels happy, or Tom, frustrated by most of the problems he encounters? Maybe neither Sophie nor Tom can be classified as such, but it could be that asthma affects them differently. Both Sophie and Tom may encounter psychological problems because of their asthma, but Sophie seems to cope better than Tom. It could also be that Sophie is surrounded by people who alleviate the stress associated with having asthma. The research on which the thesis is based, explores the psychological impact of asthma on a child’s life. The central question was whether asthma has a general effect on all children with asthma, or whether the effect of asthma depends on the particular child. The answer to this question has important practical implications. If asthma has a detrimental effect on all children, interventions should focus on prevention of these psychological problems and should be helpful to all children. If their asthma only affects certain children, interventions should focus on features that distinguish a

Introduction

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child with psychological problems from a child without problems. In this case, it is important to identify children ‘at risk’. Little is known about how children with asthma feel and think. Studies among children with asthma have mainly looked at disease-related stress, such as how much asthmatic children feel bothered by respiratory symptoms (e.g., Kohlman-Carrieri, Kieckhefer, Janson-Bjerklie & Souza, 1991) or how much they feel limited in sports and physical exercise (Van Veldhoven, 1998). Little research has been done on stressful situations that are not directly related to their disease, such as school and social interactions, thus on stressors that are common to all children, whether they have asthma or not. Knowledge about both kinds of stressors is important in order to obtain a more complete picture of the emotional life of the child with asthma. The study described in this book incorporates both disease-related and school-related stressors.

Childhood Asthma Asthma is a chronic inflammatory condition of the airways with immunological and genetic causes. Despite the availability of effective and safe medication, childhood asthma cannot be cured, so far. Even disappearance of symptoms in adulthood does not indicate remission or cure of asthma (Grol, Gerritsen & Postma, 1996). Asthma is considered to be a somatic disease, which affects the child’s emotional life. Only four decades ago, asthma was viewed as a psychosomatic disease, implying that asthma was a consequence of a disturbed personality or of a disturbed mother-child interaction (Alexander, 1952; Dekker & Groen, 1956). Nowadays, it is commonly agreed that a 'disease-prone personality' does not exist (Friedman, 1990; Lehrer, Isenberg, & Hochron, 1993). In this book the psychosomatic view on asthma is rejected. Rather, the reverse relationship is the focus of attention, namely the effect of asthma on the child’s psychosocial functioning. Asthma is the most frequent chronic disease in children. Dutch population surveys show that almost 10% of all primary school children in the Netherlands suffer from asthma, which is the highest prevalence rate of all childhood chronic diseases (C.B.S., 1997). In addition, the prevalence and severity of asthma are increasing (C.B.S., 1996). Thus, asthma affects a large group of children in a more serious way, which makes a study among children with this chronic disease valuable and imperative. Asthma is a ‘hidden disease’. One cannot tell from the outside whether a child has asthma or not. Two characteristics of asthma are responsible for its invisible nature. The first characteristic is the intermittent nature, which means that a child may experience asthmatic symptoms for a few days and subsequently be free of symptoms for several months (Creer, Harm & Marion, 1988; Creer & Bender,

Introduction

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1995). The second characteristic is that symptoms of asthma often occur at night, as a result of physiological processes that accompany sleep and aggravate asthma symptoms (National Institutes of Health, 1992). Invisibility of a chronic disease has been identified as a risk factor for developing certain kinds of psychosocial problems (Jessop & Stein, 1985).

Asthma as a stressor Asthma serves as an ever-present stressor.1 Having asthma implies being confronted with physical and medical stressors every day. Children with asthma experience all kinds of asthma symptoms, such as shortness of breath and coughing. Compared to their peers, they are ill more often, and, consequently, they are more often absent from school. Children with asthma are also confronted with self-management tasks, such as taking medication on a daily basis, avoiding allergens, visiting doctors and being hospitalized. Frequently, others interfere with their medical regimen, and they need to explain about restrictions due to their disease, for example asking others to stop smoking a cigarette or explaining that they cannot visit a friend’s home because they have a cat. Children with asthma are also confronted with common stressors, thus with stressors that all children experience, whether they have asthma or not. One of the hypotheses in this study is that children with asthma are more often confronted with common stressors. From their higher rates of school absenteeism (Bender, 1995; Celano & Geller, 1993), it can be inferred that children with asthma experience more failure and work overload, because they have to catch up with school work every time they return after a long absence from school. In addition, it has been suggested that chronically ill children are more prone to being rejected by peers, because they stand out due to their disease (Pless & Pinkerton, 1975; Ross & Ross, 1984). Social isolation may also occur as a result of physical limitations, such as not being able to participate in some sports (Colland, 1988; van Veldhoven, 1998). Finally, heightened restrictiveness or overprotectiveness often occur in parents and other adults when dealing with a child with asthma (Davis & Wasserman, 1992; Nassau

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A distinction is often made between ‘major stressors’ and ‘minor stressors’ (or daily hassles, Lazarus & Folkman, 1984). However, a strict distinction is not possible, due to the fact that a major life event may evolve into various daily hassles (Boekaerts, 1996). For example, after the initial shock of obtaining the diagnosis of asthma, many minor stressors follow such as having to take medication day in day out, always being alert to allergens in the environment that may trigger an asthma attack, etc. In this study only minor stressors are the object of study. Other studies have shown that minor stressors correlated with child problems over and above the effects of major life events (DuBois, Felner, Brand, Adan, & Evans, 1992; Wagner, Compas, & Howell, 1988).

Introduction

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& Drotar, 1995). In spite of this, the hypothesis that children with asthma are more frequently confronted with these common stressors than their peers has never been tested by research studies.

The ‘Typical Asthma Child’ Does the ‘typical asthma child’ exist? What is the effect of an ever-present stressor such as asthma on a child? It has been suggested that the stressors described above put a child with asthma at risk of developing psychosocial and school problems (e.g., Eiser, 1990; Patterson & Blum, 1996; Perrin & MacLean, 1988; Thompson & Gustafson, 1996). This hypothesis has been tested in studies that examined the direct effects of asthma on the child’s psychosocial functioning2 (Boekaerts & Röder, 1999). Within this line of research it is assumed that a stressor exerts direct effects on a person’s functioning, also known as the stimulus-oriented approach of stress (Lazarus & Folkman, 1984). Coping strategies of children with asthma may have been altered as a result of the fact that their daily experiences differ from those of children without asthma (Eiser, 1992; Olson, Johansen, Powers, Pope & Klein, 1993; Phipps, Fairclough, & Mulhern, 1995). For example, it was found that, when blood is taken, children with a chronic disease (asthma, diabetes, and rheumatoid arthritis) used more cognitive coping strategies, such as positive self-talk or attention diversion, than children without a chronic disease (Olson, Johansen, Powers, Pope & Klein, 1993). It has also been suggested that the need for emotional support of children with asthma may be stronger, because they experience more stress compared to their peers (Eiser, 1994). So far, coping strategies and social support of children with asthma have not yet been studied consistently. The present study intends to contribute to knowledge about the ‘typical asthma child’ by studying how much stress they experience at school, their ways of coping with it, and their reliance on emotional and informational support from significant others. Furthermore, their psychosocial functioning was studied in order to see whether results of other studies could be replicated.

What Is Special About a Child with Asthma? What is special about a child who manages to adjust to his or her asthma? How does the individual child cope with the stressors associated with having asthma? Individual differences between children with asthma are the focus of attention in much current research. Several

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In accordance with Thompson and Gustafson (1996) psychosocial functioning is viewed as an umbrella term that encompasses several dimensions: psychological functioning, social functioning and school performance.

Introduction

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researchers (e.g., Eiser, 1991; Garrison, 1992; La Greca & Lemanek 1996; Pless and Nolan, 1991; Spirito, Stark, Grace, & Stamoulis, 1991) proposed that research centred on children with a chronic illness should no longer focus on their malfunctioning, but on the identification of personal and social sources that are associated with positive adjustment. Thus, studying direct effects of asthma should be replaced by studying risk and protective factors that play a mediating role in the child's psychosocial and school functioning. Studying individual differences is in accordance with a transactional model of coping in which person and situation characteristics continuously influence each other. As mediating factors have been mentioned: disease characteristics (such as severity of asthma), child characteristics (such as coping resources), family characteristics (such as parental education), and the social context (such as social support provided) (Patterson & Blum, 1996). The child’s coping resources and social support system have been identified as the two most important factors to explain differences in children’s psychosocial functioning (Eiser, 1991; La Greca, Siegel, Wallander & Walker, 1992, p.120). Supportive relationships with peers and one’s family appear to foster effective coping (see Compas, 1987). The family determines, to a large extent, the environment with which the child interacts, both in positive and negative ways. Hence, parents or other family members may be able to support the child adequately, buffering the effects of the stress the child experiences. On the other hand, they may be an additional stressor to the child, for example in case of overprotection (Kaplan & Toshima, 1990; Patterson & Blum, 1996). Whenever coping or social support resources fail to defeat the stresses, the child may develop psychosocial problems. Many studies in child health included various risk and resistance factors when studying the psychological impact of asthma on children and their families. However, most studies lacked a conceptual or theoretical framework, which is necessary to select variables that are important in explaining differences in outcomes (Thompson & Gustafson, 1996). Rather, researchers have identified correlates of coping in chronically ill children on the basis of their intuitions and interests (Eiser, 1990). In addition, the absence of a theoretical framework leads to much confusion when results of several studies are integrated. For example, self-concept has been studied both as an outcome measure (see Chapter 1) and as an protective or mediating factor in the explanation of children’s psychosocial functioning (see Chapter 2) (Patterson & Blum, 1996). In the present study, the variables studied are taken from a coherent theoretical model of coping with chronic diseases developed for adults and adapted for children with asthma (see Chapter 2).

Introduction

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Research Questions The aim of the present study was to characterise children with asthma on their psychosocial functioning and their stress processing. This was done in two ways. First, children with asthma were described as a group, thus differences between children with asthma and children without asthma were examined. Secondly, individual differences within the group of children with asthma were described, thus correlates of psychosocial problems were examined. The following three research questions were formulated:

1. Do children with asthma show more psychosocial problems than their peers? 2. Do children with asthma differ from their peers with respect to experiencing stress, coping strategies, and perceived social support? 3. How can differences in psychosocial functioning between children with asthma be accounted for?

Explanations for differences in psychosocial functioning are sought in several concepts that are part of the theoretical model for coping with chronic disease by Maes, Leventhal and De Ridder (1996): (1) perceived stress when confronted with disease-related and school-related stressors, (2) coping strategies when confronted with these stressors, (3) coping with asthma in daily life, and (4) quantity and quality of perceived social support. Demographic variables, such as age, gender, and parental educational level, as well as disease characteristics are also included in the study. The children in this study were between eight and twelve years old. This age range was chosen for two reasons. First of all, reliable self-reports can only be obtained from children of eight years and older, because at these ages children are able to describe themselves in terms of psychological characteristics, as well as in terms of situationally based behaviours (La Greca, 1990; Stone & Lemanek, 1990). Secondly, a restricted age group limits the variability in the developmental tasks and processes. Children between the ages of eight to twelve years are confronted with similar developmental tasks, which are centred on school and sports. The ultimate goal of this thesis is to provide a better insight in the emotional life of children with asthma, especially with respect to school-related and disease-related events that may be stressful for them.

Introduction

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Outline Chapter 1 contains a description of the most important physical and medical aspects of childhood asthma, such as clinical features, trigger factors, management, and morbidity. In addition, the literature on the effects of asthma on the child’s psychosocial functioning is reviewed. In Chapter 2 a conceptual framework is discussed that served as the basis for this study, the ‘Extended Model for Coping with Chronic Diseases’ by Maes, Leventhal, and De Ridder (1996). In addition, the factors that characterise children with psychosocial problems, which are part of this model, are reviewed. No questionnaires were available that measured children’s stress and coping strategies in response to disease-related and school-related stress. Also, no adequate questionnaires were available to measure social support of children, therefore, three questionnaires were constructed specifically for this study. In Chapter 3 the phases of construction are described on the basis of a sample of 392 primary school children and 119 children with asthma. In Chapter 4 the first and second research questions are addressed. Children with and without asthma were compared on several indices of psychosocial functioning (well-being at school, behaviour problems, school performance, and school absence), as well as on experienced stress, coping strategies, and perceived social support. In Chapter 5 the third research question is tackled. On the basis of a sample of 119 children with asthma, explanations for differences in psychosocial functioning were sought in variables of stress, coping, and social support. Chapter 4 and 5 have been written as independent articles, and may thus show some overlap with other chapters. The results of this study and its implications for future research and practice are discussed in Chapter 6. Chapter 7 contains an three-mode analysis of the situational dependence of emotions and coping strategies in children with asthma. The book closes with a summary and a number of Appendices.

Introduction

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Childhood asthma and its psychosocial consequences

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Chapter 1 Childhood Asthma and its Psychosocial Consequences 1.1. Introduction Children with asthma are first of all confronted with the physical and practical consequences of asthma. They suffer from symptoms of asthma, such as shortness of breath, often as a result of trigger factors in their environment. They have to comply with the medical regimen, like avoiding these trigger factors, taking medication every day, and visiting the physician. These physical consequences put an emotional strain on the child as well as on the parents, which may result in daily emotional upheavals and in the long run have psychosocial consequences, such as behaviour problems and low school performance. In this chapter the physical consequences of childhood asthma are discussed first. It starts with a medical description of childhood asthma (definition, diagnosis, trigger factors, and severity), followed by rates of prevalence, morbidity, and mortality for primary school children. Then, three management practices of childhood asthma are explained, namely environmental control, medication or drug therapy, and self-management. In the last part of the chapter the psychosocial consequences of asthma on children are discussed, both short term consequences (i.e., emotional responses to asthma exacerbations) and long term consequences (i.e., psychosocial functioning of children with asthma). The term ‘Chronic Non Specific Lung Disease (CNSLD3) is often used as a generalised concept including three respiratory disorders, namely asthma, chronic bronchitis, and emphysema or ‘Chronic Obstructive Pulmonary Disease (COPD) (Fletcher, 1959). The term 'wheezing disorders' has been suggested for children under 3-4 years and the term 'asthma' for older children, due to the differences between these two age groups in symptoms, pathophysiology, and efficacy of therapy (Silverman, 1995). In this book, the term ‘asthma’ is used, because asthma is most common among primary school children (Roorda, 1992).

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Dutch translation is ‘CARA’ (Chronisch Aspecifieke Respiratoire Aandoeningen).


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1.2. Description of Childhood Asthma Childhood asthma is described in this section by presenting a definition of asthma and the levels of severity. In addition, an explanation is provided of when the diagnosis of asthma is made, and which factors may trigger an asthma attack. 1.2.1. Definition of Asthma Up to the present, there is no agreement on the definition of asthma. One of the main reasons that has been given in the literature for the unsuccessful attempts to define asthma is that definitions often include a reference to etiology4. However, the cause of asthma is still unknown, which makes defining asthma in terms of its etiology impossible (Creer & Bender, 1995). The definition of asthma set up by the International Consensus guided by the National Heart, Lung, and Blood Institute and the National Institutes of Health (1992) in the United States, is most often used. The International Consensus Group consisted of eighteen physicians and scientists representing eleven nationalities in Europe and the U.S.A. They provided the following definition: "Asthma is a chronic inflammatory disorder of the airways in which many cells play a role, including mast cells and eosinophils. In susceptible individuals this inflammation causes symptoms which are usually associated with widespread but variable airflow obstruction that is often reversible either spontaneously or with treatment, and causes an associated increase in airway responsiveness to a variety of stimuli" (p. 605). In the Netherlands, consensus has been reached among several organisations such as the Nederlands Huisartsen Genootschap (Dutch General Practitioners Association) and the Nederlands Vereniging Kindergeneeskunde (Dutch Society of Paediatric Medicine) (Centraal Begeleidings Orgaan (C.B.O.), 1992)5, as well as among Dutch paediatric pulmonologists (Van der Laag, Van Aalderen, Duiverman, Van Essen-Zandvliet & Nagelkerke, 1991a; Hoekstra, 1997). The following definition was agreed upon among Dutch medical specialists: "Asthma is a reversible bronchial obstruction, characterised by attacks and with symptoms of breathlessness, coughing and/or wheezing on the basis of hyperreactivity of the airways to allergen and non-allergen triggers, and a chronic inflammation as a pathological substrate" (C.B.O., 1992; p. 2).

4 Etiology is the study of all factors that may be involved in the development of an illness (The Signet Mosby Medical Encyclopedia, 1996). 5 The conclusions of this consensus group have been reported by K.F. Kerrebijn (1993) in the Nederlands Tijd schrift voor Geneeskunde, [Dutch Journal of Medicine] 193; 137 (25), p.1239-1246.


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These two definitions share five characteristics of asthma. Two refer to the pathophysiology of asthma, and three to clinical features. The two pathophysiological characteristics are airway inflammation and hyperreactivity (Van der Laag et al., 1991a). Airway inflammation refers to a chronic infection of the mucous membrane. Hyperreactivity is an abnormal airway response to a variety of stimuli (see trigger factors below). This leads to a reduction in small airway diameter, due to muscle spasm and increased mucus secretion. (Creer, 1988; Creer & Bender, 1995) mentions three clinical features of asthma, namely its intermittent, variable, and reversible nature. 'Intermittent' refers to the irregularity in the occurrence of symptoms and asthma attacks. A patient may experience asthmatic symptoms for a few days every month, and subsequently be symptomfree for several months. 'Variable' refers to the changes in severity of a patient’s asthmatic symptoms. Finally, the characteristic 'reversible' distinguishes asthma from chronic bronchitis and emphysema, and refers to the characteristic that the acute airway obstruction remits either spontaneously or with treatment. 1.2.2. Diagnosis The diagnosis of asthma is made on the basis of clinical features (Hoekstra, 1997; Silverman, 1995). These include symptoms of asthma, objective measures of lung function and bronchial responsiveness, and efficacy of therapy. The fluctuations of symptoms is best collected by means of an extensive anamnestic interview. The Dutch General Practitioner's Association (Dirksen, Geyer, De Haan et al., 1993) has set the following standards for frequency and duration of these features in order to decide on the diagnosis 'childhood asthma': "The diagnosis of asthma applies to children who experience one of the following symptoms: (1) periods of coughing and/or congestion of the chest, that occur at least five times a year, and, if not treated adequately, last for at least 10 days; (2) attacks of shortness of breath and predominantly expiratory wheezing; (3) shortness of breath and wheezing after physical exercise" (p. 55). These symptoms in themselves are not diagnostic. What is important is a history of recurrent exacerbations or attacks, and nocturnal asthma symptoms (National Institutes of Health, 1992), often accompanied by other features such as eczema, a running nose, sneezing, or irritated eyes (CBO, 1992). Since asthma symptoms are characteristically episodic, interim physical examinations may be normal. In addition, accurate recognition of asthma symptoms is difficult, especially for children under the age of eleven (Guyatt, Juniper, Griffith, Feeny & Ferrie, 1997; Rietveld, Prins, Colland & Kolk, 1996). Therefore, in establishing a diagnosis, objective measures are crucial in addition to anamnestic information (Kerrebijn, 1993; National Institutes of Health, 1992). A commonly used


12

objective measure is the assessment of extent and variability of airway obstruction (or lung function) monitored by recording PEF ('peak expiratory flow’) or FEV1 (‘forced expiratory volume in 1 second’). PEF rates are easily assessed by means of hand-held peak-flow meters. Children from the age of 4-6 years onwards are usually able to use such a device. One disadvantage of using peakflow meters is that they are dependent on the child's efforts (Fritz, Yeung, Wamboldt et al., 1996). The Dutch Consensus Group stated that a diagnosis of asthma is plausible when an obstruction of the airways is reversible after administration of asthma-specific medication, that is when an improvement in PEF of more than 20% is obtained (Kerrebijn, 1993). Another measure that is used by several consensus groups (Dirksen et al., 1993; National Institutes of Health, 1992) to obtain an indication of hyperreactivity of the airways, is the peak-flow amplitude. If the PEF fluctuates more than 20% during 24 hours, hyperreactivity of the airways is plausible. In addition, tests to demonstrate allergen-specific IgE6 (skin-prick tests and RAST7) give information about the allergens that could lead to airway obstruction in the child. However, these tests have low diagnostic value since most children under the age of three have a negative score, and 30% of the older children has a positive score, whilst the diagnosis asthma does not apply to them (cf. Dirksen et al., 1993). Their value is rather therapeutic, that is to confirm a single causative allergen for the purpose of setting up guidelines for treatment (National Institutes of Health, 1992). Despite the above-mentioned criteria that form the basis for establishing a diagnosis, a clear line between 'asthma' and 'no asthma' is difficult to draw. The reason is that the level of airway responsiveness is normally distributed in population samples, which gives rise to a 'grey area' between definite asthma and no asthmatic symptoms (Silverman, 1995; Weiss, O'Connor, Rijcken, Schouten, Van der Lende, Speizer, 1989). This also gives rise to considerable underdiagnosis and undertreatment of asthma among children, due to the fact that both general practitioners and parents consider children's respiratory symptoms as temporary and fail to recognise their chronicity (Hermens-De Louw & Meulmeester, 1996; le Coq, 1998). Especially in infants and young children no clear distinction can be made between asthma and wheezing-associated lower respiratory illnesses (Vaessen-Verberne, 1997). This was emphasised by the finding that 87% of the children with asthma are reported as having symptoms before the age of five (Gerritsen, 1989), but only half of this group of children are recognised at these ages as suffering from asthma (Hermens, De Louw & Meulmeester, 1996). 6

IgE is an abbreviation of 'Immunoglobulin E antibodies', which refers to antibodies the human body produces in response to allergens. 7 RAST is an abbreviation of 'radioallergosorbent test'.


13

Several epidemiological studies also showed that the presence of respiratory symptoms is not similar to being diagnosed with asthma. Flach and Brunekreef (1991) studied 2,943 children between the ages of six and twelve years old. More than 5% of the parents (5.4%) reported that their child showed symptoms of chronic coughing and 5.9% reported shortness of breath and wheezing. However, only 4.2% of the children were diagnosed as having asthma, and only 1.7% used asthma medication. Similar differences in percentage between symptoms and diagnosis were reported in another Dutch epidemiological study among 3377 five and eleven year old children (Van der Wal & Rijcken, 1995); 11.3% of the children showed respiratory symptoms, whereas only 5.4% were diagnosed as having asthma. Detecting asthma at an early age is important, because it has been shown that such patients can be treated effectively with inhaled corticosteroids. In this way, deterioration of the lung function and increased bronchial hyperreactivity can be prevented optimally (Grol, Gerritsen & Postma, 1996; Tirimanna, 1997). 1.2.3. Trigger factors Identified trigger factors that may produce asthma symptoms in children include (see Leffert, 1980; Silverman, 1995): (1) Viral infections: upper respiratory tract infections are major triggers of symptoms of asthma; (2) Environmental allergic factors: inhalant antigens such as pollen, animal dander8, house dust mite faeces, are important triggers for symptoms of asthma; (3) Ingested allergens: some children have developed 'food intolerance'. The most common allergens are nuts, eggs, orange squash, and milk; (4) Physical stimuli: changes in the weather and mist are, in particular, frequently associated with fluctuation in asthma symptoms; (5) Irritants: a number of irritant substances may trigger symptoms, the most common are tobacco smoke, air pollution and aerosol sprays. With regard to children, passive smoking in particular has been found to reduce pulmonary function in the long run (Tager, Weiss, Munoz, Rosner & Speizer, 1983); (6) Emotional stress: emotional behaviours, such as crying or laughing, may cause changes in the breathing pattern, which consequently triggers the bronchi and aggravates asthma symptoms (Weinstein, 1984). In addition, experienced emotions such as anxiety may result in overbreathing,

8

Dander is defined as ‘Dry scales shed from the skin or hair of animals or the feathers of birds' (The Signet Mosby Medical Encyclopedia, 1996).


14

which leads to bronchoconstriction due to cooling of the airways (Clark, 1982; Lewis, Lewis & Tattersfield, 1984); (7) Exercise: 70-80% of the children with asthma suffer from exercise-induced asthma (Bierman, Kawabori & Pierson, 1975). Similarly to emotional behaviours, physical activity causes narrowing of the airways, and therefore may provoke asthma reactions. Moreover, cold air inhalation is considered as an important trigger for exercise-induced asthma (Strauss, McFadden, Ingram & Jaeger, 1977). The mechanisms involved in exercise-induced asthma remain controversial (Van Veldhoven, 1998) This list of trigger factors shows that children with asthma are constantly exposed to possible threats to exacerbations of their asthma. In particular, children who also have developed allergic reactions to various allergens should be aware of their environment every moment, whether they are inside the house or outside. One can imagine the emotional strain this may pose on a child and his family. 1.2.4. Severity Severity of asthma has been defined and measured differently among clinicians and researchers. There has been no widespread acceptance on any classification scheme of severity of asthma (Creer & Winder, 1986; Creer & Bender, 1995). Some researchers based their assessment of severity of childhood asthma solely on the use of medication, mostly type of medication and frequency of use (Norrish, Tooley, Godfrey, 1977; Zimmer et al., 1987). In these studies mild asthma was characterised by the use of bronchodilators9, moderate asthma by occasional use of oral or inhaled corticosteroids, and severe asthma by continuous use of oral or inhaled corticosteroids10. Other researchers included other variables as well, such as peak-flow rates (Renne, 1982), lung function (Van der Lende et al., 1975), frequency and severity of asthmatic symptoms (Mesters, Meertens, Kok & Parcel, 1994; Meijer, Griffioen, Van Nierop, Oppenheimer, 1995; Schüller, 1982; Van der Lende et al., 1975), frequency of asthma attacks and number of days missed at school (Perrin, MacLean & Perrin, 1989). The National Institutes of Health (1992) set up a promising classification scheme of asthma severity that combined clinical features before treatment, objective measures (lung function), and medication that is required to maintain control. Categories of asthma severity were mild, moderate,

9

Bronchodilators are medications to control acute exacerbations. Corticosteroids are medications to prevent attacks.

10


15

and severe. The Dutch Consensus Group (Kerrebijn, 1993) agreed with this classification scheme, and adapted it for children. In their scheme the middle category is divided into 'mild to moderate' and 'moderate to severe', for reasons of progressive application of medications. Mild asthma is characterised by brief exacerbations of less than once a month, symptom-free periods between exacerbations, and close to normal lung function (PEF more than 80% of the child's highest previous value and variability of PEF less than 20%). Children with mild asthma should receive a beta2-agonist11 on an 'as needed' basis, but less than 2 to 3 times a week. Mild to moderate asthma is characterised by exacerbations of once a week to once a month, which may last for a few days. Beta2-agonists are used during these exacerbations. PEF is 60-80% of the child's highest previous value, and its variability lies between 20 and 30%. Moderate to severe asthma shows similar characteristics to mild-to-moderate asthma, but with more nocturnal symptoms, and more need for beta2-agonists (almost on a daily basis). Inhaled anti-inflammatory agents are often prescribed as a maintenance therapy. Severe asthma is characterised by exacerbations several times a week. Symptoms such as coughing and wheezing are shown almost every day, and more than once a week at night. The lung function is less than 60% of the child's highest previous value and shows a variability of more than 30%. Beta2-agonists are needed every day, sometimes up to 3 times a day. Inhaled anti-inflammatory agents are prescribed as maintenance therapy. The classification scheme described above shows that several measures are taken into account when distinguishing between mild, moderate or severe asthma in the child. These are frequency and duration of symptoms (also at night), need for asthma medication, and lung function. It is preferable that these three measures are collected in studies among children with asthma.

1.3. Epidemiology Rates of prevalence, morbidity, and mortality for children with asthma are presented in this section, which are based on epidemiological studies in the Netherlands and abroad. 1.3.1. Prevalence Prevalence rates of asthma are difficult to obtain and to interpret, due to the variability of symptoms throughout the year. For this reason, point prevalence rates, i.e. the proportion of patients with a specific illness at a particular point in time, are rather inaccurate with regard to

11

Beta2-agonists are bronchodilators.


16

asthma. Therefore, prevalence of asthma needs to be measured over a period of time, preferably 12 months due to the seasonal variability of asthma (Cogswell, 1994). Reported prevalence percentages of childhood asthma in the U.K., U.S.A., Australia, and New Zealand are between 10 and 20%, according to Cogswell (1994). Studies conducted earlier (in 1988) reported lower percentages: between 4 and 5% (Fowler, Davenport & Garg, 1992; Newacheck & Taylor, 1992). Epidemiological studies in other countries reported percentages of 6.7% in the United Arab Emirates (Bener, Abdulrazzaq, Debuse & Abdin, 1994) and 4% among 2041 ten-year old children in Germany (Wjst Roell, Dold et al., 1996). In the Netherlands, an epidemiological study conducted between 1994 and 1995 reported an asthma prevalence percentage of 9.1% among children aged 0-14 years (C.B.S., 1997). Studies conducted in specific geographical areas of the Netherlands reported slightly different percentages of asthma symptoms among children between 4 and 15 years: between 5.4% and 5.9%12 in the north of the province of Brabant (Flach & Brunekreef, 1991); 8.5% in the north-east of the province of Friesland, the province of Flevoland and the middle of the Netherlands (Rijcken, 1986; Verkerk, Rijcken, Schouten & Van der Lende, 1987); 11.3% in Amsterdam (Van der Wal & Rijcken, 1995); 12% in the province of Limburg (Hermens-De Louw & Meulmeester, 1996). On the basis of these differences in percentages one could conclude that geographical differences in the Netherlands exist. However, a study by Janssen, Zock, Brunekreef, Groot, and Rijcken (1994) showed that this is not the case. In their study, data on the presence of respiratory symptoms in 15,967 children from 15 different geographical areas (12 regions and three cities) were examined for geographical differences. The authors reported no significant differences between the 15 different areas. Thus, observed differences in Dutch studies may be due to differences in research methods (such as sample selection, questionnaires, and informants) or in the age of the children rather than to true geographical differences. Differences in prevalence rates between the different countries may also be attributed to differences in research methods or ages of the children included in the sample. Moreover, definitions of asthma vary across studies. For example, in most foreign studies, prevalence rates were based on the diagnosis of asthma having been made (e.g., Wjst et al., 1996), whereas in most Dutch studies rates were based on the presence of respiratory symptoms (e.g., Van der Wal &

12

The percentage of 5.4% refers to the symptom 'chronic coughing' and 5.9% to the symptom 'shortness of breath and wheezing'. The authors did not report the percentage of children that showed both of these symptoms, which are considered to be the 'core symptoms of childhood asthma' (Kerrebijn, HoogeveenSchroot, & Van der Wal, 1977).


17

Rijcken, 1995). As has been stated before, there is a considerable difference between the presence of respiratory symptoms and the diagnosis of asthma being confirmed by a physician. Epidemiological studies outside the Netherlands have reported that the prevalence and severity of asthma have been increasing over the years (Anderson, Burland & Strachan, 1994; Burney, Chinn & Rona, 1990; Cogswell, 1994; Newacheck & Taylor, 1992; Weiss & Wagener, 1990). Epidemiological data from Dutch samples support these conclusions. In the period 19891995 the prevalence of asthma in the Netherlands showed an increase of 20% (C.B.S., 1996). With regard to children (0-14 years) the reported increase of prevalence rate was even higher, namely 40%13: in 1989-1990 the prevalence rate was 6.5% (C.B.S., 1992) and in 1994-1995 it was 9.1% (C.B.S., 1997). Factors that have been suggested in the literature as contributing to this increase are increased environmental air pollution (Goren & Hellmann, 1988), increased maternal smoking (Martinez, Cline & Burrows, 1992; Weitzman, Gortmaker, Walker & Sobol, 1990), and heightened exposure to house dust mite allergen, which is due to well-isolated houses in modern times (Sporik, Holgate, Platts-Mills & Cogswell, 1990). It has also been suggested that the term 'asthma' is more easily used as a diagnostic label, both by patients and physicians. However, a study among children with asthma showed that this only explains a small proportion of the increased prevalence of childhood asthma (Hill, Williams, Tattersfield & Britton, 1989). Differences in prevalence rates with regard to gender and age are reported throughout the literature. Most studies reported higher asthma rates for boys than for girls (about 1.5 times higher), both in the Netherlands (Groot, De Boer & Baeke, 1992; Van der Wal & Rijcken, 1995) as well as elsewhere (Bener et al., 1994; Fowler, Davenport & Garg, 1992; Newacheck & Taylor, 1992; Weitzman, Sobol & Gortmaker, 1990). With regard to age, most studies reported that the prevalence of asthma decreases with increasing age. In a Dutch sample the prevalence rate for children between 5 and 7 years old was 10%, whereas the rate for 10 to 12 years olds was 7.5% (Groot et al., 1992). In a U.S. sample 5.3% of the 5-8 year olds were reported to have asthma, 5.1% of the 9-12 year olds, and 4.6% of the 13-17 year olds (Fowler, Davenport & Garg, 1992). 1.3.2. Morbidity Measures of morbidity relate to visits to the doctor, prescribed medications, hospitalisation and days absent from school (Cogswell, 1994; Creer & Bender, 1995).

13

The increase in percentage was computed, based on the assumption that the number of children on which the prevalence percentages were computed, was the same in 1989-1990 and in 1994-1995.


18

A study in the Netherlands was conducted on trends (period 1981-1990) in prescribed medications and in number of visits to the general practitioner and specialist (Wever-Hess, Kouwenberg & Wever, 1993). It was revealed that the number of first consultations remained steady, whereas the number of repeated consultations of the specialist increased in the age group 511 years. In addition, the prescription rates increased for bronchodilators (prescribed by the specialist) as well as for anti-inflammatory drugs (prescribed by G.P. and specialist). The authors suggested that the increase in repeated consultations and in higher prescription rates of asthma medication could be explained by changes in the asthma management practices, as well as by increased severity. In a study by Wever-Hess, Wever, and Yntema (1991) morbidity was operationalised by hospital admission rates and the average length of stay in the hospital. National morbidity data from the Netherlands (provided by the Central Bureau of Statistics) were analysed for asthma, acute bronchitis, pneumonia and influenza, and other chronic obstructive pulmonary illnesses in children aged 0-14 years for 1980-1987. The aim of the study was to detect trends towards an increase or decrease in age-specific14 morbidity rates over the 1980-1987 period. It was concluded that, in general, there was a tendency towards an increase in the hospital admission rate for the respiratory illnesses in the age groups 0-4 and 5-9 years, with no discrepant trends between boys and girls. No significant trends were found in the 10-14 year age group. A decline in the average length of stay in the hospital was found, especially in the two youngest age groups. However, the lengths of hospital stays due to respiratory illnesses were still substantial, compared to the length of stay due to other causes. For example, in 1986 the average length of stay due to asthma for children aged 5-9 years is 8.4 days and 11.2 days for other respiratory illnesses, compared to 6.9 days for all causes. The numbers for the 10-14 year-olds were similar: 10.1 days for asthma, 12.9 days for other respiratory illnesses, and 9.0 days for other causes. Explanations given for the increase in hospital admission rates were increased prevalence, increased severity of respiratory illnesses, as well as changes in asthma management practices (Wever-Hess, Kouwenberg & Wever, 1993; Wever-Hess et al., 1991). With regard to school absenteeism, studies vary in measures used. Some studies counted the number and frequency of days of absence (Fowler, Davenport & Garg, 1992; Lako, 1983; McNaughton, Smith, Rea et al. 1993; Newacheck and Taylor, 1992), whereas other studies assessed absence rates on the basis of a certain length of period, being defined by the researchers (Bener et 14

The data of the following three age groups were analysed separately: 0-4 years; 5-9 years; 10-14 years.


19

al., 1994; Fowler et al., 1992; Groot, De Boer, and Baecke, 1992; Verkerk, Rijcken, Schouten & Van der Lende, 1987). Moreover, the ages of the children differed across the various studies. This makes it difficult to compare the various studies on school absenteeism with each other. In the Netherlands, Lako (1983) showed that children with a chronic condition, including asthma, were significantly more absent from school than their peers, measured in frequency of absence and the average length of one absence. Children with a chronic condition were 2.9 times absent during a period of nine months, compared to 2.5 times for their peers. In addition, the length of each absence period was longer: 2.4 days for children with a chronic condition against 1.9 days for healthy children. Unfortunately, the data were not specified per chronic illness, thus no data were available for children with asthma. In U.S. samples, an average of 4.6 school absence days due to asthma was reported by Newacheck and Taylor (1992), and an average of 7.6 days by Fowler, Davenport, and Garg (1992). In New-Zealand, McNaughton et al. (1993) studied 381 children with asthma between the ages 6 and 11. They reported that children with asthma were present at school an average of 353 half days, compared to an estimated average from a national survey in 1982 of 370 half days. Other researchers assessed absence rates in terms of a defined length of period. On the basis of Dutch population studies, Groot, De Boer, and Baecke (1992) reported that one third of annual school absence rates of longer than one week were due to respiratory complaints. In another study (Verkerk, Rijcken, Schouten & Van der Lende, 1987), children with asthma in the Netherlands accounted for one fourth of long and frequent absence rates (longer than one week and more than twice a year). An epidemiological study among primary school children in United Arab Emirates showed that 5% of the children without asthma had been absent for at least one day during the school year, whereas 66% of the children with asthma had been absent for more than one day (Bener et al., 1994). The authors reported significant gender differences in absence rate: 62% of the boys versus 72% of the girls with asthma had been absent for at least one day. Finally, in Fowler et al.’s study (1992), 42% of children with asthma missed more than 6 days of school, compared to 12% of the healthy children. In conclusion, several studies showed that children with asthma are more absent from school than children without asthma, although measures of absence rates differed across studies. 1.3.3. Mortality Deaths due to asthma are fortunately rare in children. In the Netherlands, a total of 37 children between 0-14 years of age died in the period 1988-1995; annually this number ranged from


20

two to eight children (C.B.S., 1990-1997). Nevertheless, it has recently been suggested in the literature that mortality due to asthma has increased over the period 1975-1990 (Moffitt, Gearhart & Yates, 1994; National Institutes of Health, 1992). Reasons for this increase are sought in the daily use of beta-agonists (instead of incidental use) (Spitzer, Suissa, Ernst, Horowitz, Habbick, Cockcroft et al., 1992), the increased prevalence and severity of childhood asthma, as well as a labelling shift from acute bronchitis to asthma (cf. Wever-Hess & Wever, 1997). However, on the basis of epidemiological data in the Netherlands for 1980-1987, it was concluded that there were no trends in the mortality rates in the age group 5-14 years (Wever-Hess, Wever & Yntema, 1991). No similar studies have been conducted on epidemiological data from 1988 onwards. A recent study by Wever-Hess and Wever (1997) presented trends on asthma mortality in the Netherlands over the period 1980-1994. Unfortunately, the age group 5-14 years was no longer analysed as a separate group. Instead, the following age groups were considered: 0-4, 5-34, 35-64, and older than 65 years. It was concluded that a significant increase in mortality was found in the youngest age group, whereas a decrease was found in the 5-34 years age group. The absence of an increase in mortality rate was confirmed by Cogswell (1994), who based his conclusion on epidemiological data in Britain. A tentative conclusion is that an increase in mortality rate is found in children younger than four years, whereas mortality rates are stable in older children.

1.4. Management of Childhood Asthma The main objective of management of asthma is to allow children to lead an unrestricted life (Silverman, 1995). The National Institutes of Health (1992) formulated more specific goals, which are: (1) achieve and maintain control of symptoms, (2) prevent asthma exacerbations, (3) maintain pulmonary function as close to normal levels, (4) maintain normal activity levels, including exercise, (5) avoid adverse effects from asthma medications, (6) prevent development of irreversible airway obstruction, and (7) prevent asthma mortality (p. 608). Two Dutch consensus groups (the Dutch General Practitioners Association (Dirksen et al., 1993) and the section Paediatric Pulmonology of the Dutch Association of Paediatrics (Van der Laag et al., 1991b; Hoekstra, 1997) set up similar goals for the management of childhood asthma, with additional goals of 'normal school attendance', and 'participation in sports'. Specialists in the field of childhood asthma underscored the importance of adequate treatment at an early age, in order to prevent


21

increasing deterioration of the lung function in later life (Tirimanna, 1997; Van der Laag, Van Aalderen, Duiverman, Van Essen-Zandvliet, Nagelkerke & Van Nierop, 1991b). Basically, asthma management refers to environmental control, drug therapy, and education of the child and the families (Moffitt, Gearhart & Yates, 1994). In the Netherlands, children with asthma are cared for by a General Practitioner or a specialist (paediatrician, paediatric pulmonologist). A recent development is the incorporation of asthma nurses in the management of asthma (Hoekstra, 1997). The asthma nurse is responsible for behavioural aspects of the management of asthma, such as inhalation technique and house-cleaning prescriptions. 1.4.1. Environmental control The first measure to be taken in the asthma management is the identification and control of triggers of asthma exacerbations, also called 'environmental control' (Murray & Ferguson, 1983; National Institutes of Health, 1992; Silverman, 1995; Van der Laag et al., 1991b; Warner, 1992). For example, for children with house dust or house dust mite allergy it is important to apply certain house-cleaning prescriptions. In addition, the presence of house dust mite can be repelled by lowering the humidity in the house and by ventilating the house on a regular basis (cf. Hoekstra, 1997). It is important for all children with asthma to avoid cigarette smoke as much as possible, since this may facilitate asthma attacks in the short run and worsen the child's lung function in the long run (Murray & Morrison, 1989; Tager et al., 1983). Despite these environmental measures, it is sometimes impossible to avoid certain triggers, such as pollen in the air, or house dust mite. Therefore, the use of medication is also needed as part of the management of asthma. 1.4.2. Drug therapy The major pharmacological agents used to treat asthma can be classified as either medications used to control acute exacerbations, or medications for maintenance therapy. Medications to control acute exacerbations are called bronchodilators. These act to dilate the airways by relaxing bronchial smooth muscles. The most commonly used bronchodilators are beta2agonists. Beta2-agonists cause bronchodilation by direct stimulation of beta2-receptors on smooth muscle cells. In general, it provides immediate relief for patients, lasting for 4-6 hours (short-acting beta2-agonists, such as salbutamol) or up to 12 hours (long-acting beta2-agonists, such as salmeterol) (Vaessen-Verberne, 1997). Short-acting agonists are more often prescribed than long-


22

acting agonists. The Dutch Consensus Group (Hoekstra, 1997) advised using the long-lasting agonists only in combination with anti-inflammatory agents, and only for children above four years of age. Both short- and long-acting beta2-agonists should only be used on an 'as needed' basis. A need for daily use of these agents is a warning of deterioration of the asthma and indicate a need to institute or intensify a regular anti-inflammatory therapy (National Institutes of Health, 1992). Patients must be cautioned against overuse of beta2-agonists, because studies have shown an association with increased bronchial hyperreactivity and increased mortality (Sears, Taylor, Print et al., 1990; Spitzer et al., 1992). Medications used for maintenance therapy are called anti-inflammatory agents. They have suppressive effects on inflammatory cells, probably partly by reducing their survival. Furthermore, they may inhibit mucus secretion (Vaessen-Verberne, 1997). In children with asthma corticosteroids are the most effective agents for the treatment of moderate and severe asthma (Hoekstra, 1997). These agents can be inhaled or taken orally. A long-term intervention study (Van Essen-Zandvliet, 1993) showed that the addition of inhaled corticosteroids to an inhaled beta2agonist improved both physiological measures (FEV1, PEF) and clinical measures (symptoms, exacerbations, school absence) in a sample of 58 children with moderate asthma over a period of 22 months. One of the most often reported side effects of corticosteroids is delayed growth. A metaanalysis of 21 studies failed to show a significant effect on growth from inhaled corticosteroids (Allen, Mullen, Mullen, 1994; see Kerrebijn, 1993, for an overview of the literature). Yet, the Dutch consensus group of paediatric pulmonologists (Hoekstra, 1997) advised cautious use of inhaled corticosteroids and checking the growth of the child periodically. Oral corticosteroids (e.g., prednisone) are only used in case of uncontrollable asthma. Studies reported adverse side effects, such as increased weight, osteoporosis15, decreased verbal memory and feelings of anxiousness and depression (Bender, Lerner & Kollasch, 1988). In addition to the above described drug therapy, the consensus group of paediatric pulmonologists in the Netherlands advised that children with asthma should be given the annual influenza vaccine, because viral infections are one of the main trigger factors in inducing symptoms of asthma (Neijens, Rothbarth & Sprenger, 1997, cf. Hoekstra, 1997).

15

Osteoporosis is defined as “a loss of normal bone density with thinning of bone tissue and the growth of small holes in the bones” (The Signet Mosby Medical Encyclopedia, 1996).


23

In order to motivate patients to use the prescribed medications and follow the advice given about environmental control, physicians need to educate children and their parents, with selfmanagement as the ultimate goal. This topic will be discussed in the following section. 1.4.3. Self-management The role of the physician and other health-care providers. The ultimate goal in the treatment of asthma is self-management by the child and his or her parents, meaning that they know how to recognise early symptoms of asthma and how to deal with it. Children from eight years onwards are given an increasing role in self-management tasks (Van Es, 1999). Several consensus groups have set up guidelines regarding the role of the physician in this process. First of all, the physician should provide general information about the medical aspects of childhood asthma (for example, features of asthma, its prognosis, goal and effect of medications), and practical information about how to use a peak-flow meter and an inhaler. The use of a peakflow meter is recommended for monitoring a child's asthma. Asymptomatic changes in peak-flow values often precede exacerbations, which can then be prevented by use of medication (Moffitt, Gearhart & Yates, 1994). In addition to general information, specific information should be given about the individual child’s asthma, for example about the kind of allergens that provoke symptoms of asthma in the child, or what to do in case of exacerbations. Moreover, the physician should give advice about some general facts, for example, explain that (passive) smoking reduces the lung function (Tager et al., 1983), and that exercise is recommended, even for the child with exercise-induced asthma (Van Veldhoven, 1998). Finally, it is important to address certain psychosocial aspects of childhood asthma, e.g., the child may be ashamed about having asthma, the parents may overprotect the child (Dirksen et al., 1993). A complicating factor in the management of childhood asthma is that there are always two parties involved, namely the child and his parents. This implies that the information should not only be given to the parent, but to the child as well. Thus, information should be adjusted to the child's cognitive level (Koopman, 1993). It also implies that the child's role in the self-management of asthma should be geared towards his age and feelings of responsibility and autonomy. Recently, the role of asthma nurses in the management of childhood asthma has been promoted in the Netherlands, to take over some of the tasks of the physician (Hoekstra, 1997). Asthma nurses work in hospitals or Primary Health Services (called Kruisverenigingen in the


24

Netherlands), in collaboration with General Practitioners. The role of the asthma nurse is to instruct the child and parents about inhalation techniques and use of the peak-flow meter, and to check during follow-up visits whether the children use the inhaler and peak-flow meter adequately. The asthma nurse also plays a prominent role in advising the parents about house-cleaning, during a home visit. Finally, the asthma nurse may provide self-management programmes when needed by the child or the parents. Self-management programmes in the Netherlands. The Dutch Consensus Group (Hoekstra, 1997) promoted collaboration of all health-care providers that are involved in the management of childhood asthma, including a general practitioner, an asthma nurse, and a paediatrician. A good example of a Dutch educational programme geared towards the collaboration of various health care providers, is the one developed by Mesters (1993). The programme provides information to the parents of pre-school children (0-4 years). It consists of an educational protocol for health care providers regulating the contents, the transfer and the organisation of patient education. The educational protocol consists of four booklets with information, one for the parents, one for the general practitioner or paediatrician, one for the asthma nurse or community nurse, and one for doctors in Infant Welfare Centres (in Dutch: Consultatiebureau-arts). The booklet for each health care provider contains information on educating the parents about asthma. At the end of each visit the health care provider hands the parent one of the pages with information about the topic that was discussed during that visit. For example, the booklet for the general practitioner contains information about medical aspects of asthma and the lungs, and the booklet for the asthma nurse informs about the application of certain house-cleaning measures. Although this programme has been developed for parents of pre-school children it may be used for parents of older children as well. This programme has been distributed by the Netherlands Asthma Foundation through the National Organisation of General Practitioners. A self-management programme for children between the ages of 8 and 13 years and their parents was developed by Colland (1990). The programme was a result of years of experience gained with children who spent time in Asthma Centre 'Heideheuvel' (Hilversum, The Netherlands). The target group exists of children with inadequate coping strategies or whose attitude towards their asthma is extremely anxious or negative. This group of children can be selected by means of the


25

Astma Coping en Belevingtest ('Asthma Coping Test' 16; Colland, 1991; Colland & Fournier, 1990). The children's programme consists of 10 one-hour group sessions, using intervention methods such as games, role-play, and home assignments. The parental training consists of six two-and-a-half hour sessions and is basically an adaptation of the children’s programme. Parents are stimulated to teach their child about what they have learned. The ultimate aim of the programme is to improve the child's coping with asthma in daily life. During the period following the development and evaluation of Colland's programme, it was distributed within the Netherlands by asthma nurses and psychologists, working in hospitals, in-patient clinics and out-patient clinics. The training of these nurses and psychologists is provided by Colland (personal communication, January, 1998). Children who are under the care of a paediatrician are offered the opportunity of joining the programme when they experience psychosocial or other problems in relation to their asthma. The programme is available in about 30 hospitals in The Netherlands. A shortened version of Colland's programme has recently been used in a project called 'Asthma, at home and at school', which was financed by the ‘Netherlands Asthma Foundation’ (De Bruijn, 1997). This project consisted of six meetings for children with asthma (8-12 years) and (separately) for their parents, as well as an educational package for the teacher. Both programmes are guided by community nurses, working at Municipal Health Services (GGD 'Gemeentelijk Gezondheids Dienst' in the Netherlands). The educational packages are available to all Municipal Health Services in the Netherlands (over 60 in total). The community nurses take care of the implementation of this programme in the schools. The programme is available to all interested children with asthma and their parents. The self-management programmes presented above are all developed for children up to 12 years of age. Adolescents have received far less attention; so far no programmes have been developed especially for this age group. One exception is a self-management programme recently set up and evaluated by Van Es (1999). This intervention programme consisted of four visits to a paediatrician combined with a visit to an asthma nurse. The paediatrician provided regular medical care to the adolescent. The asthma nurse discussed the implications of the standard medical care for the individual adolescent and checked whether the information given was understood and still remembered by the adolescent. In addition, the asthma nurse organised three group sessions (consisting of four to eight adolescents), in which various difficult situations with regard to having asthma were discussed. Examples of this are taking medication when others are around, telling 16

For a description of this instrument, see Chapter 2, Section 2.3.2.


26

others that the smoke of their cigarettes bothers you, explaining to the physician how you handle your asthma. Focus group interviews with adolescents emphasised the important role of the asthma nurse in the management of asthma (Van Es, Le Coq, Brouwer, Mesters, Nagelkerke, Colland, 1998). The ‘Netherlands Asthma Foundation’ plays a prominent part in the provision of information to children and adults with asthma. They developed a game for children, called Superspul (based on the American 'Superstuff') which teaches the child with asthma about selfmanagement of asthma, such as the identification of triggers. Each month, a magazine, called Contrastma, with information regarding asthma and recent developments in the field of research is distributed among members. Moreover, free brochures are available with information about different topics, such as 'cleaning schools' and 'asthma and exercise'. Each year holiday camps for children with asthma are organised. In addition, local courses are organised for parents, consisting of five two-hour meetings. Each meeting centres on a theme, such as medication, house-cleaning measures, physiotherapy, and rearing a child with asthma. These courses are available to all interested parents. Unfortunately, these courses have never been evaluated with respect to their effects on parents and children. Effectiveness of self-management programmes. In general, the aims of asthma self-management programmes include enhancing knowledge about asthma in children with asthma and their parents, teaching them specific competencies and skills to monitor and manage their asthma, and developing self-confidence about managing the asthma (Wilson-Pessano & McNabb, 1985). For children, a meta-analysis on the basis of eleven intervention studies showed that morbidity (measured by means of school absenteeism, asthma attacks, hospitalisations, and emergency visits) was not reduced in the children who participated in these intervention programmes (Bernard-Boddin, Stachenko, Bonin, Charette & Rousseau, 1995). The authors concluded that the reliance on morbidity indices as an indication of success of intervention is somewhat arbitrary, because these indices depend on behaviours of the patients. For example, staying home from school is more determined by how the parent and the child view the asthmatic symptoms than on the objective severity of asthma. Therefore, the authors advise to including behavioural measures as outcomes of intervention studies as well. In his review of the literature on the effectiveness of asthma self-management programmes developed for children, Creer (1991) attended to such behavioural aspects. He concluded that programmes that attended to psychological aspects (such as how to cope with feelings of shame and fear) generated more


27

beneficial outcomes in terms of the child's psychosocial adjustment than programmes that only focused on medical aspects (such as prevention of attacks and use of medication). The results of studies on the effectiveness of three Dutch intervention programmes highlighted Creer’s conclusion. The educational protocol developed by Mesters (1993) appeared to be effective in enhancing parents' knowledge about asthma, a positive attitude towards asthma, and self-efficacy with respect to performing asthma self-management behaviours. In addition, selfreported severity decreased, and the number of visits to the general practitioner as well as to emergency rooms declined (Mesters, Meertens, Kok, Parcel, 1994). Colland’s programme (1990) had a positive effect on children’s attitude and coping behaviours. They employed preventive actions more often, communicated more adequately about their asthma, felt more self-efficacious about dealing with attacks, demonstrated correct inhalation techniques more frequently, felt less anxious and had gained a more realistic perception of their illness. In addition, some medical aspects improved; they had fewer nightly awakenings, they had to postpone activities less frequently, and they were rated as having less severe asthma (based on use of medication) according to their paediatricians. The programme 'Asthma, at home and at school' also improved the children's coping with asthma; the children felt more confident about managing attacks, they gained a more positive attitude towards their asthma and the parents benefited from the contacts with other parents with an asthmatic child (De Bruijn, 1997). In conclusion, children’s attitude and coping effectiveness with regard to their asthma improved as a result of intervention programmes that focused on behavioural aspects.

1.5. Consequences of Childhood Asthma Asthma affects the child’s emotional state, both in the short run and in the long run. Shortterm consequences of asthma, the child’s emotional responses, are discussed first, including the role of emotions in asthma exacerbations. Then, long-term consequences of asthma, the child’s psychosocial functioning, are discussed next. 1.5.1. Short term consequences: Emotions According to Butz and Alexander (1993) 65% of the children with asthma reported a feeling of panic at the beginning of an asthma attack. The emotion most frequently described by 74% of the 29 children in Kohlman-Carrieri et al.'s study (1991) was "worried". The majority of the children also felt sad, nervous, and scared that the bad breathing would never go away. Vice versa, emotions may also have an aggravating effect on asthma attacks. One of the explanations is that


28

emotions, such as anxiety, may result in overbreathing, which leads to bronchoconstriction due to cooling of the airways (Clark, 1982; Lehrer et al., 1993; Lewis, Lewis & Tattersfield, 1984). In addition, emotional behaviours, such as crying or laughing, may cause changes in the breathing pattern, which consequently trigger the bronchi and aggravate asthma symptoms. This was shown in a study among 268 children with asthma. Forty percent of the children demonstrated cryinginduced asthma symptoms, as reported by their mother (Weinstein, 1984). Two studies showed that emotions or a negative state of mood may also affect children’s interpretation of asthma symptoms. In the first study (Rietveld, Kolk & Prins, 1996a), emotionally aroused children reported more breathlessness when they were told that their lung function was low (whereas it was actually high), and reported less breathlessness when told that their lung function was high (whereas it was actually low). In another study by Rietveld, Kolk & Prins (1996b), children who viewed an emotional movie before taking physical exercise reported higher breathlessness than children who only viewed the movie, who only exercised, or who exercised before watching the movie. This study demonstrated that the possible ambiguous sensations after exercise such as fatigue, heart pounding, hyperventilation, and sighing were interpreted as symptoms of asthma, but only when the children experienced negative emotions. It can be concluded that the relationship between asthma symptoms and emotions is bidirectional. Children may react with panic or fear to exacerbations of their asthma, and vice versa, asthma symptoms may aggravate in response to emotions. 1.5.2. Long-term Consequences: Psychosocial Functioning17 Long-term consequences refer to the impact of having asthma on a child's functioning with regard to school performance, emotional well-being, self-esteem, and friendships. The studies reviewed in this section were categorised into three sections, i.e. psychological functioning, social functioning, and school performance. Only studies conducted later than 1985 are presented, because excellent review articles exist on studies conducted before 1985 (see Creer, 1982; La Greca & Stone, 1985; Nolan & Pless, 1986). A literature search using the PsycLit, Eric, and Medline CDRom system (1985-1997) was conducted with the following keywords: 'children', 'asthma', 'emotional', 'psychological', 'social', 'adjustment', 'behaviour problems', and 'school performance'. To be included in this review, studies had to (1) include a sample of children diagnosed with asthma

17

Psychosocial functioning has been called an ‘umbrella term’ by Thompson and Gustafson (1996), encompassing several dimensions: psychological functioning, social functioning, and school performance.


29

between the ages 8-12; (2) analyse the data of this group of children as a separate group18; (3) use norm groups or comparison groups of children without a chronic illness19; (4) include at least one measure of children's psychological, social, or school functioning. Intervention studies and case studies were excluded. This resulted in 21 studies suitable for the purposes of this review (see Table 1.1.). For each study, characteristics of the sample, assessment measures (only those related to the child's functioning), and results are described. Before these studies are presented, a concept that has links with these three domains of functioning is briefly addressed, namely quality of life. Quality of Life Recently, the concept of quality of life has gained ground as an outcome measure in child health research. Although some authors use the term 'quality of life' interchangeably with 'functional status' or with 'psychosocial adjustment', quality of life is considered conceptually different (Bender, 1996). The current discussion on quality of life of children with a chronic illness centres on its definition and on the construction of assessment measures (e.g., Bruil, 1999; Christie & French, 1994). Up till now, no definition of quality of life has gained universal acceptance (Bender, 1996). Many definitions of quality of life resemble the WHO (1958) definition of health as a 'state of complete physical, mental, and social well-being'. Consensus is growing on a definition that entails the following two aspects: (1) quality of life is a multidimensional concept, including aspects of physical status, psychological and social functioning (Kind, 1994; Patrick & Erickson, 1988; Schipper, Clinch & Powell, 1990); and (2) quality of life can only be assessed by the person it concerns (Bruil, 1999). Calman (1984) stressed the importance of subjectivity, by stating that subjective quality of life is a better indicator for someone's functioning than a rating given by another person, such as a physician. McSweeny and Creer (1995) provided an overview of several health-related quality of life instruments, that vary in their content and comprehensiveness. The assessment of health-related quality of life can be categorised into three strategies (McSweeny & Creer, 1995). The first involves the use of general measures of quality of life, the second concerns illness-specific measures and the

18

A meta-analysis conducted by Lavigne and Faier-Routman (1992) on the basis of 87 studies on psychological adjustment of children with various chronic physical disorders, could not be included for this reason. 19 This requirement leads to the exclusion of studies, such as that of Holden, Chmielewski, Nelson, and Kagar (1997) and of Siefert, Wittman, Farquar, and Talsema (1992), in which children with asthma are not compared to children without a chronic illness but to groups of children with cancer and diabetes, respectively.


30

third incorporates using batteries of single-dimension measures. General measures can be used with a variety of populations, whereas illness-specific measures are designed to assess particular diagnostic or patient groups. Examples of the second kind of measures for children with asthma are the Childhood Asthma Questionnaire (Christie, French, Sowden et al., 1993), the Children's Asthma Symptom Checklist (Kinsman, Luparello, O'Banion et al., 1973), and the Life Activities Questionnaire for Childhood Asthma (Creer, Wigal & Kotses et al., 1993). Recently, a quality of life instrument called How Are You? was developed for children which incorporates both a general part (to be completed by all children) and a specific part (to be completed by children with asthma) (Bruil, 1999; Le Coq et al., 1998). Quality of life is sometimes assessed on the basis of a selection of existing instruments. For example, the State-Trait Anxiety Inventory of Spielberger has been used as an index of the child's anxiety as a response to illness-related stressors, such as an asthma attack (e.g., Colland, 1990). And the 'Youth Self Report' (Achenbach & Edelbrock, 1983) has been used to measure behaviour problems reported by the child. Although these instruments are not quality-of-life instruments, they may provide an indirect index of the various domains of quality of life, the physical, psychological, and social domain (McSweeny and Creer, 1995). The instruments selected for this study are not considered to be an indirect index of quality of life. Therefore, the term 'psychosocial functioning' was chosen instead of 'quality of life'. Psychological Functioning Psychological functioning has mostly been conceptualised in terms of psychiatric disorders, such as depression, conduct disorders and anxiety disorders. These disorders were mainly assessed by means of the 'Child Behavior Checklist' (CBCL; Achenbach & Edelbrock, 1983), as completed by the parents. Various studies reported that children with asthma showed more behaviour and emotional problems when assessed with the Child Behavior Checklist or with another instrument that assesses psychiatric disorders (Austin & Huberty, 1993; Bussing, Burket & Kelleher, 1996; Eksi, Molzan, Savasir & Güler, 1995; Furrow, Hambley & Brazil, 1989; Gizynski & Shapiro, 1990; Hambley, Brazil, Furrow & Chua, 1989; Hamlett, Pellegrini & Katz, 1992; Kashani, König, Shepperd, Wifley & Morris, 1992; MacLean, Perrin, Gortmaker & Pierre, 1992; Padur et al., 1995). Comparison groups consisted of children without a chronic illness (Bussing, Burket & Kelleher, 1996; Eksi et al., 1995; Hamlett et al., 1992; Padur et al., 1995), norm groups (Austin & Huberty, 1993; Furrow et al., 1989; Hambley et al., 1989; MacLean et al., 1992; Wallander et al., 1989), and acutely ill children (Kashani et al., 1988). A closer examination revealed that the higher level of


31

behaviour problems was mainly reflected by a higher level of internalising problems, especially of depression, somatic complaints, and anxiety disorders (Austin & Huberty, 1993; Bussing, Burket & Kelleher, 1996; Bussing et al., 1995; Furrow et al., 1989; Hamlett et al., 1992; MacLean et al., 1992). Only one study did not support this conclusion. Christiaanse, Lavigne and Lerner (1989) did not detect any differences in behaviour problems measured with the Child Behavior Checklist between the asthma group (n=22) and norm groups. The small number of children included in this study may have given this study insufficient power to discover meaningful differences.


Table 1.1.

32

Overview of studies reviewed on psychosocial functioning and school performance of children with asthma

Reference

Asthma group

Comparison-

N

group

(M:F)

N

Results20

Assessment Measure (Reference)

Informant

Outcomes

Child Behavior Checklist (Achenbach &

parent

total behaviour problems

–

child

subscale depression

–

self-concept

0

–

Age-range (mean) (1) Austin &

133

norm groups

Huberty (1993)

(2:1)

Edelbrock, 1983);

8-12 years

Piers-Harris Children's Self-Concept Scale (Piers, 1969)

(2)Bussing, Burket

37

healthy

Semi-structural interview: ‘anxiety

parent and

anxiety disorder (a

& Kelleher (1996)

(2:1)

31

section’ of the Kiddie-Schedule for

child

combined score on the

7-17 years

Affective Disorders and Schizophrenia for

basis of parent and child

(11.0)

School-Age Children-Present Episode (K-

scores)

SADS-P; Puig-Antich & Ryan, 1986)

20

(+)

Children with asthma had higher scores, representing better functioning

(0)

Children with asthma had similar scores

(–)

Children with asthma had lower scores, representing worse functioning


Reference

Asthma group

Comparison-

N

group

(M:F)

N

33


Informant

Outcomes

parent

total behaviour problem

Results20

Age-range (mean) 0

(3) Bussing,

225

population

Behaviour Problem Index (Peterson &

Halfon, Benjamin

(3:2)

without

Zill, 1986)

& Wells (1995)

5-17 years

chronic

consisting of six sub-

0

(10.9)

conditions

scales:

–

6927

•

antisocial behaviour

0

•

anxiety/depression

0

•

headstrong attitude

0

•

hyperactivity

0

•

immature

score,

dependence • (4) Eksi, Molzan,

60

healthy


Savasir & Güler

(5:3)

60

Edelbrock, 1983)

(1995)

4-16 years

parent

peer conflict

social competence

–

internalising behaviour

–

problems

–


Reference

Asthma group

Comparison-

N

group

(M:F)

N

34


Informant

Outcomes

Results20

Age-range (mean) externalising behaviour problems (5) Fowler,

536

population

Davenport & Garg

(3:2)

9,826

(1992)

5-17 years

(6) Furrow,

31

Hambley & Brazil

(3:1)

(1989)

6-11 years

normgroups

specific questionnaire


parent

parent

Edelbrock, 1983)

grade failure

0

learning disability

–

suspension/expulsion

0


–

problems

0

externalising behaviour problems

(7) Gizynski &

20

behavioural


Shapiro (1990)

(3:1)

disorders

Edelbrock, 1983)

4-13 (8.9)

years

Parents

20 Childhood Depression Rating Scale

Not

(Poznanski, 1984)

reported

behaviour problems

+


Reference

Asthma group

Comparison-

N

group

(M:F)

N

35


Informant

Outcomes

Results20

Sociometric Questionnaire

child and

acceptance

0

classmates

mutual friendships

0

classmates

liking

0

rejection

0

child

loneliness

0

classmates

sociability-leadership

0

aggressive-disruptive

0

sensitive-isolated

0

sporting ability

0

illness behaviour

–

Age-range (mean) (8) Graetz & Shute

21

matched

(1995)

(3:1)

controls on age

8-13 years

and sex from the same classroom 21

The Liking Rating Scale (Asher, Singleton, Tinsley & Hymel, 1979); The Loneliness Scale (Asher, Hymel & Renshaw, 1984) The Revised Class Play (Masten, Morison & Pellegrini, 1985)


Reference

Asthma group

Comparison-

N

group

(M:F)

N

36

Results20


Informant

Outcomes

Woodcock-Johnson Psycho Educational

child

academic achievement

0

child

intelligence

0

parents

social competence

Age-range (mean) Norm groups

(9) Gutstadt,

99

Gillette, Mrazek,

(1:1)

Battery (part II) (1978) Slosson

Fukuhara,

9-17 years

Intelligence Test (1963)

LaBrecque &

(12.7)

Strunk (1989) (10) Hambley,

54

Brazil, Furrow &

(2:1)

Chua (1989)

6-16 years

Norm groups

Child Behavior Checklist (Achenbach & Edelbrock, 1983)

–

(M 6–

total behaviour problems

11) 0 (F 6–11) – (M 6–11) 0 (F 6–11)

(11) Hamlett,

17

children


mother


–

Pellegrini & Katz

(3:2)

without a

Edelbrock, 1983)

problems

0

(1992)

6-14 years

chronic disease

externalising behaviour

(9.7)

(30)

problems


Reference

Asthma group

Comparison-

N

group

(M:F)

N

37


Informant

Outcomes

Results20

Piers-Harris Children's Self-Concept

child

self-concept

+

child

internal health locus of

Age-range (mean) (12) Hazzard &

80

normgroups

Angert (1986)

(2:1)

Scale (Piers, 1969)

7-15 years

Children's Health Locus of Control

control

(Parcel & Meyer, 1978) (13) Kashani,

56

acutely ill

Diagnostic Interview for Children and

König, Shepperd,

(2:1)

matched on age

Adolescents (DICA) (Herjanic & Reich,

Wifley & Morris

7-16 years

and sex (56)

1982)

(1992)

+ child

parent

DICA - Parent Version (Herjanic &

number of symptoms

0

overanxious symptoms

0

number of symptoms

–

overanxious symptoms

–

social competence

0

internalising and

–


–

Reich, 1982) Child Behavior Checklist (Achenbach & Edelbrock, 1983)

parent

problems


Reference

Asthma group

Comparison-

N

group

(M:F)

N

38

Results20


Informant

Outcomes

Hopelessness Scale (Kazdin, French, Unis

child

hopelessness

0

child

self-concept

0

mother

social competence

Age-range (mean)

& Esveldt-Dawson, 1983) Piers-Harris Children's Self-Concept Scale (Piers, 1969) (14) MacLean,

63

norm groups


Perrin, Gortmaker

(3:2)

& Pierre (1992)

6-11 years

(15) Nelms (1989)

40

healthy

Children Depression Inventory (Kovacs,

(1:1)

children (40)

1978)

Edelbrock, 1983)

9-11 years

– (F)/ 0 (M)

total behaviour problem

–

child

depressive symptoms

–

child

general self-concept

–

child

aggression

0

Sears Self-Concept Inventory (Sears, 1964) Self-report questionnaire (Feshbach & Feshbach, 1969)


Reference

Asthma group

Comparison-

N

group

(M:F)

N

39

Results20


Informant

Outcomes

Specific questionnaire

parent

limitation in activities

–

Age-range (mean) (16) Newacheck &

747

children with

Taylor (1992)

(3:2)

other chronic

0-17 years

conditions (4585)

(17) Padur,

25

healthy

Children Depression Inventory (Kovacs,

child

depression

0

Rapoff, Houston et

(5:2)

children (25)

1978)

parent

depression

–

al. (1995)

8-16 years

parent

social competence

0



–

Edelbrock, 1983)

problems

0

child


–

parent

problems

–

(11.7)

Piers-Harris Children's Self-Concept

general self-concept

Scale (Piers, 1969); Play Performance

restriction in activities

Scale for Children (Lansky, List, Lansky,


Reference

Asthma group

Comparison-

N

group

(M:F)

N

40


Results20

Informant

Outcomes

parent

social competence

0

child

depression

0

conduct disorders

0

physical self-concept

0

Age-range (mean) 1987) (18) Perrin,

46

healthy

Health Resources Inventory (Gesten,

MacLean & Perrin

(M:F n.a.)

children

1976)

(1989)

5-16 years

(number not available)

(19) Sandler,

99

healthy

Child Assessment Schedule

Reynolds, Kliewer

(3:1)

children (74);

(Hodges et al., 1982)

& Ramirez (1992)

8-16

divorce (94);

(10.8)

parental death (92);

(20) Weston,

65

population

Perceived Competence Scale for Children

Macfarlane &

(1:1)

(343)

(Harter, 1982)

Hopkins (1989)

11-13 years

child


Reference

Asthma group

Comparison-

N

group

(M:F)

N

41


Informant

Outcomes

specific questionnaire

parent

learning/concentration

Results20

Age-range (mean) (21) Wjst et al.

81 (1:1)

population incl.

(1996)

9-10 years

Children with chronic bronchitis (1960)

Note:

M = Male;F = Female

problems

–


42

High depression rates were only partly replicated in studies that assessed depression by means of an instrument specifically designed to measure depression. In two studies (Nelms et al., 1989; Padur et al., 1995) depression scores were higher, but in two other studies this was not the case (Kashani et al., 1992; Sandler et al., 1992). Kashani et al. (1988) also assessed the child's sense of hopelessness, defined as the extent to which he or she feels alienated and views his or her life in general as meaningless or without hope. No differences between the asthmatic and matched control group were reported. It should be noted that in some studies the mean score of asthmatic group was below the level considered to be of clinical significance (Bussing et al., 1995; Furrow et al., 1989; Hamlett et al., 1992; Kashani et al., 1988; Wallander et al., 1989), and significantly lower than the mean score of a group of children with behavioural disorders (Gizynski & Shapiro, 1990). On the other hand, in three studies, a significant number of children with asthma had scores within the clinical range (i.e., greater than the 90th percentile): 30% in MacLean et al.'s study (1992), 35% in Austin & Huberty's study (1993), and 61% in Hambley et al.'s study (1989). The inconsistencies in results on behaviour problems could be due to the different measures used, or to differences in the source of information (parents or children). This was illustrated in two studies (Kashani et al., 1992; Padur et al., 1995), in which differences in the occurrence of psychiatric diagnoses (Kashani et al., 1992) and depression (Padur et al., 1995) between asthmatics and nonasthmatics were found in parental reports. However, no such differences were found when the children themselves were the informants. Another psychological construct that has been studied extensively in relation to chronic illness is self-concept. Self-concept has been measured by means of Piers-Harris Children's SelfConcept Scale (Piers, 1969) and Harter's Perceived Competence Scale for Children (Harter, 1985). These are both self-report measures, completed by the child. Results are conflicting, which is probably due to differences in operationalisations. Studies that measured self-concept in relation to specific domains (i.e., behaviour, intellect, social competence, physical appearance, and athletic competence) reported similar self-concepts for children with asthma, compared to controls (Christiaanse, Lavigne & Lerner, 1989; Kashani et al., 1988; Weston et al., 1989). However, when the global or overall self-concept was assessed, children with asthma displayed lower (Nelms, 1989; Padur et al., 1995), higher21 (Hazzard & Angert, 1986), and similar levels of self-worth (Austin &

21

No level of significance reported.


43

Huberty, 1993; Holden, Chmielewski, Nelson & Kager, 1997; Kashani et al., 1988), compared to controls and norm groups. In conclusion, findings with regard to asthmatic children's psychological functioning are consistent when the provider of information is taken into account. The level reported by parents is higher with respect to emotional problems, such as depression and anxiety, compared to children without asthma. However, the asthmatic children themselves reported similar levels to those of children without asthma (measured in terms of behavioural and emotional problems, and domainspecific self-concept). Findings are conflicting when the child's self-concept is measured as a general concept. Social Functioning Several authors have suggested that children with asthma are at risk of being socially isolated, because their condition may hinder social interaction opportunities (Garson & Baer, 1990; La Greca, 1990; Miller and Wood, 1991; Sinnema, 1981). Factors that play a role in this are high rates of school absenteeism, restrictions in sports and play and in physical activities, and aspects of the management of asthma, such as the avoidance of allergens. For example, a child that is allergic to animal dander has to decline an invitation of a friend with a cat at home. In addition, parents may keep their child from joining peer-related activities, such as overnight stays at a friend's house or school camps, out of fear of an asthma attack. Moreover, peers sometimes have misconceptions about the illness (Miller & Wood, 1991). For example, they may think that asthma is contagious, or they may be fascinated by the illness. As a consequence, they may avoid or overprotect the child with asthma, which may hinder the development of a normal friendship. The hypothesis that children with asthma are socially maladjusted as a result of social and physical limitations should be tested in two parts. First, do children with asthma feel limited in physical and social activities, and secondly, are children with asthma socially maladjusted or incompetent? The first question was confirmed on the basis of empirical data, mainly parental reports. Children with asthma were viewed by their parents as being more restricted in social and physical activities, compared to parental ratings of children with diabetes or without a chronic disease (Bruil, 1999; Padur et al., 1995). In Bruil's study, social limitations were also more often experienced by the children themselves. Newacheck and Taylor (1992) reported that 29% of the children with asthma were limited in sports and play activities, according to their parents, compared with 5% of children without asthma. In Townsend et al.'s study (1991) 43% of the parents (n=100) considered that their child's asthma interfered with performance expected of the child. The percentage reported by


44

Donnelly, Donnelly, and Thong (1987) was even higher: 61% of the parents of asthmatic children stated that their children's participation in sporting activities was adversely affected by their asthma. In conclusion, all studies evidently showed that children with asthma experience severe limitations in sports and play activities. The second hypothesis, that physical and social limitations lead to social problems and maladjustment, is harder to confirm. Spirito, DeLawyer & Stark (1991) tested the hypothesis that restrictions in sports and play activities place the child at risk for social isolation, by means of a review of the literature on peer relations and social adjustment in chronically ill children and adolescents. They concluded that, as a group, chronically ill children did not experience poorer peer relations than healthy children. Unfortunately, no conclusions can be drawn with regard to children with asthma, since they were not studied as a separate group in their review. Studies that examined children with asthma as a separate group also reached the conclusion that they are not socially maladjusted. Using the 'Social Competence Scale' of the 'Child Behavior Checklist' (CBCL; Achenbach & Edelbrock, 1983), Kashani et al. (1988) found no differences between children with asthma and healthy controls, whereas Hambly et al. (1989) found lower social competence scores for asthmatic boys but not for girls. These results should be interpreted with caution, though, because the 'Social Competence Scale' has been criticised for its low internal consistency and its conceptual problems. This subscale mainly measures participation in social activities rather than social competence (Perrin, Stein & Drotar, 1991). Perrin, MacLean, and Perrin (1989) used another instrument, the 'Health Resources Inventory' (Gesten, 1976), developed to measure social competence or resilience of the child. Their study showed that children with asthma were rated by their parents as socially competent as a healthy comparison group. However, in Bruil's study (1999) among 275 children with asthma, both parents and children indicated lower quality of performance on social activities. In order to obtain a more complete picture of the extent to which children with asthma are socially isolated or accepted by peers, the views of peers should be included as well. This timeconsuming but informative research method has not been conducted very often. One recent study is the first of its sort (Graetz & Shute, 1995). This well-designed study examined the responses of 21 asthmatic children, matched controls from the same classroom, and the other classmates on four instruments, measuring different aspects of children's friendships (see Table 1.1. for a description of these instruments). A multivariate analysis conducted on scores on acceptance, mutual friendships, liking, rejection, and self-perceived loneliness, revealed no differences between the children with


45

asthma and their matched classmates. A second multivariate analysis on scores on social reputation for sociability-leadership, aggressive-disruptive, sensitive-isolated, illness behaviour, and sporting ability displayed a significant difference between the two groups of children. Subsequent analyses showed that this difference was due to a higher score on two aspects of illness behaviour. Children with asthma were viewed by their classmates as being sick and being absent more often. Thus, children with asthma were as well accepted and liked by their peers as children without a chronic illness, despite being considered to be generally more absent. It remains to be seen whether this conclusion is still valid when larger samples are studied. Yet, this is a noteworthy finding, even more so because the sample in Graetz and Shute's study (1995) consisted of children taking inhaled corticosteroids daily, which is considered to represent more severe asthma. In conclusion, children with asthma are limited in sports and play activities, as a result of physical problems due to their asthma. The hypothesis that these social limitations put them at risk for social maladjustment has not been confirmed based on parental and peer ratings. However, a recent study showed that asthmatic children themselves experience more social limitations and incompetence than their peers do. More research is needed to validate the latter conclusion. School Performance One may infer from the higher school absence rate among children with asthma that they are at risk for decreased school performance (Bender, 1995; Celano & Geller, 1993). Other explanations that have been offered in the literature for lower school performance include side effects of medications, lack of sleep, and emotional problems (Mearig, 1985). Review studies that examined the relationship between school absence and school performance did not find a significant association (Annett & Bender, 1994; Bender, 1995). For example, in their study of 99 children with moderate to severe asthma (Gutstadt, Gillette, Mrazek et al., 1989) the mean score on four different standardised tests of school performance and intelligence of the children with asthma was as high as that of the children without asthma, despite the fact that their school absence rate was high (20% of total school days). Studies that did report low school performance or learning disabilities in children with asthma, often relied on subjective measures, such as parental concern about the child's school performance (e.g., Fowler, Davenport & Garg, 1992), or parental ratings on the child's learning and concentration problems (Wjst et al., 1996). Both Bender (1995) and Celano and Geller (1993) concluded in their reviews that studies evaluating school performance of asthmatic children with objective measures, such as standardised tests, did not support the conclusion that this group of children is at risk for a learning disability or low school performance (e.g., Gutstadt et al., 1989). Weinberger, Lindgren, Bender et al.,


46

1987; Lindgren, Lokshin, Stromquist et al., 1992) also stated that one should be careful to base an assessment of school performance on subjective opinions. They highlighted their statement with the result that a significant number of parents believed that asthma or medication was causing learning problems in their child, when, in fact, these children's (objective) scores on achievement tests was as high as those of a normative group. 1.6. Conclusion and Implications for the Study In this chapter physical consequences of childhood asthma were discussed first. Two clinical features, namely its intermittent and reversible nature, make research among children with asthma especially interesting from a psychological point of view. The irregularity of asthma symptoms leads to uncertainty and unpredictability, which are considered to enhance stress (Lazarus & Folkman, 1984, p. 85; Van Dongen-Melman & Sanders-Woudstra, 1986). Rolland (1984) stated that the relapsing nature of asthma places a strain on the child and family by the ongoing uncertainty of when a crisis will next occur. In addition, the psychological discrepancy between symptom-free periods and exacerbations of asthma is also burdensome for the child and family (Creer and Bender, 1995). These clinical features are important factors in the development of negative disease expectations, which may subsequently lead to feelings of helplessness (Chaney, Mullins, Urtesky et al., 1999). The management of asthma places an additional strain on the child and family as a result of prescriptions and restrictions. The child and its family have to be constantly aware of allergens that trigger asthma attacks, and undertake preventive actions. Medications have to be remembered every day, and, when asthma symptoms occur, appropriate actions have to be undertaken, such as extra medication. The child and its family are also burdened with (most nightly) asthma attacks and regular visits to the doctor. As a result of episodes of exacerbations, children with asthma miss school more frequently than their classmates. It has been argued that absences from school imply an interruption of schooling and friendships, which places them at risk for low school performance and social isolation. These hypotheses were addressed in this chapter on the basis of a review of the literature. Studies of school performance based on objective measures did not support the hypothesis that children with asthma are at risk for low school performance. Furthermore, the hypothesis that social limitations put them at risk for social maladjustment has not convincingly been confirmed. More research is needed in this area. Regarding children’s psychological functioning it could be concluded that findings are consistent when the provider of information is taken into account. Parents reported more emotional problems, such as depression and anxiety, compared to parents of children without asthma. However, the asthmatic children themselves reported similar levels to those of children without


47

asthma. It is interesting to study the psychosocial consequences of asthma, entailing various physical and medical stressors. How does asthma affect the children’s emotional life? Do they experience more stress in daily life than their peers, who do not face an ever-present stressor such as asthma? Do they cope differently with stress because they have more experience with stress? Do they have differential needs of social support as a result of the heightened level of stress? And how does asthma affect their psychosocial functioning in the long run? Do children with asthma show more behaviour problems? Do they lag behind at school, because they miss school more frequently? Do they feel distressed at school? The present study intends to provide some insight in the psychological consequences of a physical illness such as asthma. It studies asthmatic children’s experience of stress, coping resources, social support resources, and psychosocial functioning, in comparison with children without a chronic disease. In this way, the ‘typical asthma child’ could be described. The literature discussed in this chapter has implications for this study, namely for the selection of children with asthma, for the selection of outcome measures, and for the choice of informant. 1.6.1 Selection of the Sample It was argued that it is important to distinguish between symptoms and a diagnosis of asthma, because symptoms in themselves are not diagnostic. For the present study, this implies that only children who were diagnosed with asthma by a physician were included. Only then, we were sure that the sample consisted of children who not only showed typical symptoms of asthma, but who also had a history of recurrent exacerbations, experienced asthma symptoms at night, and used daily medications. These aspects were important for the present study, because these are typical characteristics of chronicity of an illness. The classification scheme set up by the National Institutes of Health (1992) and adapted for children by Kerrebijn (1993) is a promising scheme to categorise asthma severity. However, it may be more of clinical significance than useful in research. A limitation of using this scheme for research purposes is that it is difficult to obtain data on the child's symptoms prior to or without treatment. As a result, it is questionable whether data on severity of the child’s asthma can be reliable. For the present study, this implies that it was decided not to measure severity of asthma, yet to collect data on clinical features of the child’s asthma (such as frequency of symptoms, number of trigger factors, frequency of use of medication, number of hospitalisations, and number of visits to the doctor). Frequent symptoms, many trigger factors, and a large number of visits to a doctor or hospital may enhance the level of stress a child experiences. The present study explored this hypothesis.


48

Most studies on psychosocial functioning reviewed here were based on 'convenience' samples, meaning that the children with asthma were already brought together as a group before the study started, for instance, in rehabilitation settings (e.g., Hambley et al., 1989). This kind of samples is biased by certain unmeasured characteristics of the children, which may influence the results. The sample of the present study was recruited via general practitioners in order to obtain a group of children that varied in asthma characteristics as well as in other, unknown characteristics.

1.6.2 Selection of Outcome Measures Emotions play an important role in asthma, although stress or emotions cannot, in themselves, cause asthma. Most children experience worry, fear, or panic in response to asthma attacks (Butz & Alexander, 1993; Kohlman-Carrieri et al., 1991). Vice versa, emotions may have an aggravating effect on asthma attacks, via changes in breathing patterns (Clark, 1982; Lehrer, et al, 1993; Lewis, Siegel & Lewis, 1984) as well as by means of children’s interpretation of asthma symptoms (Baron, Lamarre, Veilleux et al., 1986; Rietveld et al., 1996a, 1996b). These results affirmed the importance of incorporating the experience of emotions when studying the psychological effects of childhood asthma. Therefore in the present study, the child’s experience of annoyance, anger, anxiety, and sadness in response to an asthma attack was measured as one of the predictor variables in explaining four outcome measures. The following outcome measures were chosen as an indication of the long term consequences of childhood asthma. These were (1) school absence rate, (2) school performance, (3) behaviour problems, and (4) the child’s well-being at school. These four measures are supposed to cover a broad spectrum of the child’s psychosocial functioning. It was stated that school absence is to a large extent an indication of the parents’ attitude and reaction to the child’s symptoms of asthma (Kaptein-Hollman & Stoel-Copper, 1986; Lako, 1983). Bernard-Boddin et al. (1995) pointed to the problems of using school absence as an indication of severity of the illness. The suggestion given by Kaptein (1997) to consider school absence rate as an outcome measure was followed in the present study. It has often been suggested that children with asthma are at risk for low school performance, due to the fact that they miss school more frequently. This hypothesis was only confirmed on the basis of empirical studies that used parental ratings, and not when objective measures were taken. Clearly, parental ratings are more an indication of concerns of the parent than of the actual school performance of children with asthma. For this study it was decided to collect data on school performance by means of


49

objective22 measures, namely grades for reading and mathematics. Behaviour and emotional problems were chosen as an outcome measure of psychosocial functioning in order to connect with current research. Moreover, it was decided to use the 'Child Behavior Checklist' (CBCL, Achenbach & Edelbrock, 1983; Verhulst, Koot & Akkerhuis, 1990), despite criticism on its use in groups of chronically ill children by Perrin, Stein, and Drotar (1991). These authors drew attention to the sub-scale 'somatic complaints', which is part of the scale 'Internalising Behaviour Problems'. This subscale includes 8 items that refer to "physical problems without known medical cause" (e.g., eye problems, skin rash, or nausea). Children with asthma are likely to have more physical symptoms than children without a chronic condition. Such physical symptoms may be an indication of children's psychological problems, but may also be a consequence of the child's chronic condition. The parent may have difficulties in distinguishing between the two, and may consequently report more physical problems. This results in an inflated score on 'somatic complaints' for the asthmatic child, and, consequently, in a higher score on 'Internalising Behaviour Problems'. None of the studies reviewed in this chapter that used the CBCL took this warning into account, for example by excluding the items on physical symptoms. Consequently, the results should be interpreted with caution. In the present study, the physical items were left out, in order to see whether the scores on ‘Internalising Behaviour Problems’ are also elevated when this correction is applied (see Chapter 4). Finally, the child’s well-being at school was selected as an outcome measure. Children’s satisfaction about going to school, feeling accepted by their classmates, and the relationship with their teacher are important contributors to children’s well-being at school (Smits & Vorst, 1983) 1.6.3 Choice of Sources of Information In the present study, several sources of information were used in order to obtain a more or less complete picture of the child’s psychosocial functioning. First of all, child self-reports were used in order to obtain information about the children's thoughts and feelings about themselves and internal states (Flanery, 1990; La Greca, 1990b). When studying children, it is important to include information from significant others, like parents, teachers, and peers (La Greca, 1990b). The reason for this is that children are under the social control of others in their environment (Mash & Terdal, 1988). In other words, the perception and evaluation of parents, teachers, and peers of the child's behaviour will affect and be affected by the child (La Greca, 1990). In the present study, parental ratings were included in

22

Here, 'objective' refers to 'independent of child and parent ratings'.


50

order to assess the behaviour problems, and the teacher's measures to assess the child's academic performance and well-being at school. Teachers are considered to be a valuable, but often overlooked, informant source (La Greca & Lemanek, 1996). Another merit of using different sources of information is a reduction of inflated correlations (Slavin & Compas, 1989). This problem often occurs when predictor variables and outcome measures are based on the same source of information (La Greca & Lemanek, 1996). In the present study, this problem was overcome by measuring predictor variables by means of children’s self-reports and (seven out of eight) outcome measures by means of child, parent, and teacher ratings. In this chapter it was concluded that, when parental ratings were considered, children with asthma showed more internalising behavioural problems, such as depression and anxiety disorders. When children's reports were considered, not many differences between children with and without asthma could be detected. By using both parent and child ratings in the same study it could be found out whether this conclusion could be affirmed. 1.6.4 The Study of Individual Differences in Child Health Research Several researchers (e.g., Eiser, 1991; Garrison, 1992; La Greca, 1990; Pless and Nolan, 1991; Spirito, Stark, Grace & Stamoulis, 1991) proposed that research centred on children with a chronic illness should not focus on their malfunctioning, but on personal or social sources that are associated with positive adjustment. This approach is in accordance with a transactional model of coping, in which person and situation characteristics continuously influence each other, mediated by various factors. These factors have been sought in the condition itself (such as severity of asthma), in the child (such as coping skills), in the family (such as socio-economic status), and in the social context (such as social support provided) (Patterson & Blum, 1996). Instead of comparing children with asthma to children without a chronic illness, factors are sought within the group of children with asthma that are related positively or negatively to their functioning. This line of research is considered to be promising for two reasons. Firstly, it contributes to theory building, because the selection of variables to be included in research emerges from a coherent theoretical framework. Secondly, focusing on individual differences may differentiate between children with good versus poor psychosocial functioning. The identification of mediating factors is important for identifying those children who are in need of intervention, and provide us with suggestions for intervention and prevention targets. The next chapter discusses the literature on factors mediating between asthma and children's psychosocial functioning. These factors are presented within the theoretical framework that formed the


51

basis of the present study, the extended model for coping with chronic disease by Maes, Leventhal and De Ridder (1996). Variables that play an important role in explaining differences in children’s psychosocial functioning provides us with knowledge about what is special about children who function well, despite living with an ever-present stressor, their asthma.


52

Theoretical background

53

Chapter 2 Stress, Coping and Social Support in Children with Asthma: Theoretical Background 2.1. Introduction Asthma typically has periods of greater and lesser severity, in other words, periods of exacerbation alternate with symptom-free periods. This variability leads to unpredictability, which is considered to enhance stress, both in the child and the parent (Rolland, 1984; Van Dongen-Melman & Sanders-Woudstra, 1986). Living with a chronic disease, such as asthma, entails a large number of daily hassles (Eiser, 1990; Nelms, 1989; Olson, Johansen, Powers et al., 1993). Children with asthma experience all kinds of symptoms, such as shortness of breath and coughing. Compared to their peers, they are ill more often, and, consequently, they are more often absent from school. Children with asthma are also confronted with self-management tasks, such as taking medication on a daily basis, avoiding allergens, visiting doctors and being hospitalised. Frequently, others interfere with their medical regimen, and they need to explain about restrictions due to their disease, for example ask others to stop smoking a cigarette or explain why they cannot visit a friend’s home, because they have a cat. Children with asthma are also confronted with common stressors, thus with stressors that affect all children. From their higher rates of school absenteeism (Bender, 1995; Celano & Geller, 1993), it can be inferred that children with asthma experience more failure in class and work overload, because they have to catch up with school work every time they return after a long absence from school. In addition, it has been suggested that chronically ill children are more prone to being rejected by peers, because they stand out due to their disease (Pless & Pinkerton, 1975; Ross & Ross, 1984). Social isolation may also occur as a result of physical limitations, such as not being able to participate in some sports (Colland, 1988; Van Veldhoven, 1998). Finally, heightened restriction and overprotection are often seen when dealing with a child with asthma (Davis & Wasserman, 1992; Nassau & Drotar, 1995). In the child health literature it has been argued that the heightened exposure to various (diseaserelated and common) stressors leads to a higher rate of psychosocial and school problems among the group of children with a chronic disease (Hobbs, Perrin & Ireys, 1985; Patterson & Blum, 1996; Perrin & MacLean, 1988; Wallander & Varni, 1989). In Chapter 1 it was concluded that children with asthma


54

do not show many psychosocial problems. The only problems reported were emotional problems, such as depression and anxiety, rated by the parents. Social maladjustment has not persuasively been confirmed, and studies of school performance (based on objective measures) showed no differences from children without asthma. An interesting question is how children with asthma cope with the various stressors they face every day. Even more interesting is the question why some children are able to adapt to their disease, whereas other children develop psychosocial problems. The question on individual differences between children with asthma is the focus of this chapter. In this chapter, one of the widely used stress-coping models, namely the one developed by Lazarus and Folkman (1984), is presented and extended with some concepts relevant for coping with a chronic disease, according to Maes, Leventhal, and De Ridder (1996). Relevant literature on the relationships between the various concepts in the model is discussed for children with asthma. The aim of this chapter is to determine which variables of the theoretical model distinguish best between children who function well and children who do not. These variables are incorporated in the conceptual model that served as a framework for the present study.

2.2. Stress-Coping Models 2.2.1. Lazarus and Folkman's Model on Stress and Coping

EMOTIONAL RESPONSE

SECONDARY APPRAISAL

Figure 2.1

PRIMARY APPRAISAL

EVENT

COPING BEHAVIOUR

CONSEQUENCES

Stress-Coping Model by Lazarus and Folkman

The best known and most widely used stress-coping model is the one developed by Lazarus and Folkman (1984). The basic assumption of the Lazarus-Folkman model is that a person's evaluation of an event determines his emotional response and his behaviour, and not the event per se. The model is considered to be a transactional model, meaning that the person and his environment interact with each other and have an influence on each other. This implies that the model has a dynamic rather than a static character. Both the person and his environment change as a result of their interaction. In Figure 2.1 the Lazarus and Folkman model is presented. In this model two kinds of evaluation or appraisal processes are distinguished: primary and


55

secondary appraisal. Both appraisals exert an influence on someone's affective state. Primary and secondary appraisal are parallel and cyclical processes, instead of one following the other, as the terms 'primary' and 'secondary' may suggest. Primary appraisal refers to the evaluation process with regard to the impact of a situation on someone's well-being. When a person is confronted with an event, he assesses whether it has positive, neutral, or negative meaning for his well-being. When an event is regarded as positive (e.g., in the case of a challenge) positive emotions such as excitement or joy emerge. When an event is viewed as neutral, the person is indifferent to it. In the case of a negative evaluation, the event is stressful and the person experiences emotions such as anxiety, anger or sadness. Feelings of anxiety are experienced when the event is perceived as a threat, and feelings of anger, sadness, or anxiety are experienced when the event leads to damage or loss. Secondary appraisal refers to the evaluation process with regard to the question 'What can I do about it?' thus referring to the person's coping capacities to reduce the threat, damage, or loss caused by the event. Lazarus and Folkman (1984) define coping as "constantly changing cognitive and behavioral efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person" (p.141). External demands refer to the stressful event itself, internal demands to the person's emotional reactions to it. This distinction led Lazarus and Folkman (1984) differentiate between two functions of coping, i.e., problem-focused coping and emotion-focused coping. Problem-focused coping is defined as attempts to alter the stressful event and emotion-focused coping is defined as attempts to regulate negative emotional reactions to the event. Another commonly used categorisation of coping efforts in terms of their function is primary coping versus secondary coping (e.g., Rothbaum, Weisz & Snyder, 1982). Primary coping is defined as behaviour aimed at altering objective events or conditions, and secondary coping as attempts to maximise one's adaptation to current conditions. A third approach distinguishes between approach and avoidance (Roth & Cohen, 1986; Suls & Fletcher, 1985). The approach-avoidance model organises coping strategies according to their focus. Approach refers to attempts that are directed toward the stressful event, whereas avoidant coping refers to actions that are directed away from the stressful event. These three distinctions (see also Table 2.1) refer to coping styles, i.e., an individual's preferred ways of coping across different situations or over time within a given situation (Compas, 1987). Coping styles are distinguished from coping strategies, which refer to someone's coping efforts adapted to the characteristics of a stressful event. Thus, coping responses can be categorised into those that are consistent across a variety of situations (coping style) and those that arise in response to specific situational demands (coping strategies). Inconsistent results in the coping literature are probably due to


56

the fact that researchers have not adequately distinguished between coping strategies and coping styles (Maes et al., 1996).

Table 2.1

Overview of categorisations of coping used in the literature

AUTHORS

CATEGORISATION

DEFINITION

OF COPING Lazarus & Folkman (1984)

problem-focused coping

attempts to alter the stressful event

emotion-focused coping attempts to regulate negative emotional reactions to the event Rothbaum, Weisz & Snyder primary coping

behaviour aimed at altering objective events

(1982)

or conditions secondary coping

attempts to maximise one's adaptation to current conditions

Roth & Cohen (1986)

avoidance

actions that are directed away from the stressful event

Suls & Fletcher (1985)

approach

attempts directed toward the stressful event

The definition of coping by Lazarus and Folkman (1984) is process-oriented, as is intended by the words 'constantly changing', meaning that coping efforts are not static, but are adapted to the requirements of the stressful event. Even within a specific context variations in someone's coping strategies may occur, because as an event unfolds it requires a number of different coping strategies (Folkman & Lazarus, 1985; 1988). Temporal ordering of coping strategies as a disease-related event unfolds has not been studied yet. So far, it has only been applied to medical events, such as a venipuncture blood test (see for excellent reviews on this topic: Peterson, 1989; Peterson, Harbeck, Chaney, Farmer & Muir Thomas, 1990; Rudolph et al., 1995). Different coping strategies may be differentially effective during different stages of a chronic disease. Maes et al. (1996) made a distinction based on Morse & Johnson (1991) between four stages that are relevant for the study of chronic diseases: (1) a stage of uncertainty in which the person tries to conceptualise the disease, (2) a stage of disruption, in which he realises that he is plagued by something


57

that may last his whole life, (3) striving for recovery, and (4) restoration of well-being (for a detailed discussion, see Maes & Van Elderen, in: Kaptein, Appels, 2000). These stages may be less appropriate for the study of children with asthma, because symptoms of asthma and the diagnosis most likely occur at an early age (Gerritsen, 1989), at which the child is unaware of the feelings described in the different stages. Nevertheless, the parents of these children may have gone through these four stages when their child showed the first symptoms of asthma. An important implication of Lazarus and Folkman's definition is that coping is not limited to successful efforts but includes all purposeful attempts to manage stress, regardless of their effectiveness (Compas, 1987). It also implies that coping refers to volitional, intentional responses, thus excluding automated behaviours and thoughts as well as defence mechanisms (cf. Haan, 1977). In the short run, the coping process leads to a reappraisal of the stressful situation, which leads to a change in emotion quality and intensity (Folkman & Lazarus, 1988). The long-term effectiveness of coping efforts is evaluated in terms of consequences for the person's psychological, social, and physical well-being. Thus, according to the model, coping processes play a mediating role between appraisal processes and consequences. 2.2.2. Limitations of the Lazarus and Folkman model Recently, limitations of the Lazarus and Folkman model have been put forward by Maes et al., (1996). The first limitation refers to the lack of specificity of the stressful event. Perrez and Reicherts (1992) made an attempt to add the situation dimension to Lazarus' model by distinguishing the following dimensions of an event: (1) valence (the inherent stressfulness of a situation); (2) controllability (the inherent opportunities for control within a situation); (3) changeability (the probability that the situation will change by itself); (4) ambiguity (the degree to which a situation is inherently lacking in sufficient information), and (5) re-occurrence (the likelihood of the stressful situation happening again). Chronic disease episodes and other stressors can be described along these dimensions, and give rise to hypotheses with regard to someone's coping responses. For example, a child with asthma attacks that are high in controllability may use problem-focused coping strategies such as taking medication, whereas a child with asthma attacks that are low in controllability may be more likely to seek help from parents (Boekaerts & Röder, 1999). The second limitation is the neglect of interactions with the environment. For example, the model pays insufficient attention to the role of social support for the individual as well as to the impact of other environmental factors, such as major life events. Finally, criticism is directed towards the exclusive focus on the way the stressful event shapes coping behaviour, thereby overlooking the effects


58

of the individual's life goals on the selection of coping strategies. For example, an asthmatic boy may ignore the advice to avoid contact with cats, because it is more important to him to play at his friend's house (where there is a cat), than to prevent an asthma attack. The comments discussed above led Maes and his colleagues to elaborate the original stresscoping model and adapt it for coping with a chronic disease, based on the work of others (Hobfoll, 1989; Moos, 1988; Moos & Schaefer, 1993; Taylor, 1991, cf. Maes et al., 1996). The extended model for coping with chronic diseases is presented in Figure 2.2. 5

1a

2

DISEASE AND TREATMENT CHARACTERISTICS

OTHER LIFE EVENTS

1b

DISEASE-RELATED EVENT

4

DEMOGRAPHIC CHARACTERISTICS

APPRAISAL OF DEMANDS AND GOALS

3

EXTERNAL RESOURCES

EMOTIONAL RESPONSE

7

PSYCHOLOGICAL CONSEQUENCES

7

COPING BEHAVIOUR

SOCIAL CONSEQUENCES

7

PHYSICAL CONSEQUENCES COGNITIVE RESPONSE 6

Figure 2.2

INTERNAL RESOURCES

An Extended Model for Coping with Chronic Diseases (From Maes,

Leventhal & De Ridder, 1996) 2.2.3. An Extended Model for Coping with Chronic Diseases Several concepts were added to the original Lazarus and Folkman model. According to the extended model, other important life events contribute to the appraisal of disease-related events. For example, a girl with asthma whose mother recently died may experience stronger emotions when confronted with an asthma attack than before, because her emotional state is unstable due to this life event. The appraisal of a disease-related event is also affected by demographic characteristics as well as by disease and treatment characteristics. Examples of demographic characteristics are age, gender, and race of the child, and social class of the family. Examples of treatment characteristics are hospital admission, a stay in a specialised centre, such as an asthma clinic, and medical examinations. Disease characteristics refer to aspects of the disease such as symptoms and time since diagnosis. The criteria presented by Perrez and Reicherts (1992) (see above, Section 2.2.2.) could be used


59

to describe disease characteristics in objective terms. It is important to distinguish between objective characteristics of a disease and a person's appraisal of it. Whenever disease characteristics are measured subjectively, a person's appraisal is being investigated. An example may clarify this. Objective controllability of a disease-related event, such as an asthma attack, depends on how well the child's asthma responds to medical treatment. A child whose symptoms are not alleviated in response to medication has 'intractable asthma', which is considered by some to be an objective characteristic (Meijer, Griffioen, Van Nierop & Oppenheimer, 1995). Subjective controllability of an asthma attack refers to the degree to which a specific child experiences an asthma attack as "controllable" and depends on his feelings of coping with the attack. The objective characteristics of the disease-related event may affect the child’s appraisal, but it is the child's appraisal that affects his coping behaviour. Thus, two children with a similar degree of objective controllability of asthma may experience a dissimilar amount of stress, and cope differently with an oncoming attack. The difference between these two children is their difference in subjective controllability. For example, the one child feels in control of the situation, because he knows how to handle an asthma attack himself, whereas the other child feels out of control, because he thinks the breathing problems are dangerous. Appraisals are not only determined by the characteristics of a situation and of the disease, but also by a person’s goals. Effort will either be invested or not on the basis of a person's expectation of whether a certain goal can be attained. Stress arises when there is a conflict between the situation and a person's goal. More specifically, someone experiences stress when he wants to pursue a personal goal, e.g., being with his friends, but he cannot do this because of a situational demand, e.g., an uncontrollable asthma attack. The intensity of experienced stress depends on the number and importance of goals that are violated. The person's demand/goal appraisals result in coping behaviour or efforts. Coping efforts are actual behaviours or thoughts to deal with the stressful event, and are distinguished from coping functions. Coping functions refer to the goals that the coping behaviour intends to achieve (Leventhal, Suls & Leventhal, 1993, cf. Maes et al., 1996). The way a person copes with a stressful event is not only dependent on his demand/goal appraisals, but also on the appraisal of demands and goals in relation to his resources. Maes et al. (1996) defined resources as "internal or external conditions that can be used to cope with demand/goal conflicts" (p. 232). Internal resources consist of a person’s physical energy as well as personality characteristics such as intelligence, temperament, and self-esteem. External resources refer to resources in the environment, such as housing, and distance from professional help, as well as to resources in other persons, such as social support. The effects of the coping process are measured in terms of three


60

domains of outcomes: psychological, social, and physical functioning. Whether certain coping efforts are effective depends on the domain of outcome, the point in time (short or long term) and the context (Cohen and Lazarus, 1983, cf. Maes et al., 1996). Coping and social support are considered as the two core variables when confronted with stress (Kliewer, Sandler & Wolchik, 1994; Quittner, 1992; Siegel, 1992). It has been suggested that support buffers the debilitating effects of stress through its impact on coping (Kliewer et al., 1994). Social support may influence children’s coping processes in four ways: (1) directly reinforcing specific coping strategies; (2) modeling certain coping efforts; (3) providing a supportive environment in which effective coping is fostered; or (4) facilitating access to helpful resources (Sandler, Wolchik, MacKinnon et al., 1997). Studies that include both coping and social support are recommended by various researchers (e.g., La Greca & Wallander, 1992, p. 120; Sandler et al., 1997). In the next section, conceptualisation and measurement of coping and social support in child health research are presented.

2.3. Conceptualisation and Measurement of Coping and Social Support in Children 2.3.1. Conceptualisation of Coping with Stress in Children Most researchers in child health adopted the Lazarus and Folkman model (Compas, 1987; Knapp, Stark, Kurkjian & Spirito, 1991; Ryan-Wenger, 1992). Only a few researchers developed a theoretical model especially for children and adolescents. Pless and Pinkerton (1975, see also Bradford, 1997) developed a model of child adjustment to chronic disease. They hypothesised that, when a child is diagnosed with a chronic illness, child attributes like temperament and intelligence interact with characteristics of the illness, like severity, and the responses of ‘significant others’ like parents, peers and teachers. This results in the child’s response to the illness in terms of coping strategies and an altered self-concept, which subsequently determines the child’s adjustment. It is a dynamic process that continues from childhood through adult life. Wallander et al. (1989) elaborated on the Pless and Pinkerton model and integrated it with insights of Lazarus and Folkman (1984) into a disability-stress-coping conceptual model. They hypothesised that disease/disability parameters (such as severity, visibility), the child’s functional independence, and psychosocial stressors (daily hassles, major life events) act as risk factors on the child’s adjustment (mental health, social functioning, and physical health). However, this is not a one-toone relationship, because not all children with a chronic illness develop psychosocial problems. They


61

suggested that the relationship between these risk factors and adjustment is mediated by resistance factors: (1) intrapersonal factors (including temperament and problem-solving skills); (2) socialecological factors (including family members’ adaptation and social support); (3) stress-processing (such as cognitive appraisals and coping strategies). Wallander et al. (1989) adopted a noncategorical approach, meaning that this model applies to a variety of chronic illnesses. In one of their studies (Wallander, Varni et al., 1988) they found support for the noncategorical approach in that no differences were found between the psychological functioning of children with cerebral palsy, juvenile diabetes, spina bifida, hemophilia, juvenile rheumatoid arthritis, and chronic obesity. So far, most hypothesised relationships in Wallander et al.’s model have not been confirmed or were only tentatively been supported (see Bradford, 1997 for a review). For the present study it was decided not to use this model, despite its specificity for children, because too much emphasis is placed on its usefulness for a variety of chronic diseases and handicaps. Consequently, several variables included in the model such as functional independence, visibility, brain involvement, did not apply to the sample of the present study, namely children with asthma. 2.3.2. Measurement of Coping with Stress in Children Knapp et al. provided a review of coping measures developed for children and adolescents. There are four types of methods for assessing coping in children, namely projective measures (e.g., story completion tests), interviews, behavioural observations, and self-report questionnaires. Knapp et al. (1991) concluded that most projective techniques have only been used in single studies, instead of as standardised measures of coping. In general, reliability and validity indices are poor for these techniques, and, as a result, they have not been used frequently. On the other hand, interviews have been the most popular approach to the assessment of children's coping. Advantages of interviewing children are the in-depth information and questions that can be tailored to the responses given by the child. A disadvantage is that interviews are time-consuming. Although interview techniques were developed for research purposes (e.g., Band & Weisz, 1988; Wertlieb, Weigel & Feldstein, 1987), they are, in general, not appropriate as standardised assessment measures. Behavioural observations are especially useful for evaluating coping in children under the age of 8, because they are unable to report reliably about themselves. Moreover, observations are helpful in analysing phase-by-phase changes in coping with well-described stressful events, such as medical procedures and peer interactions . A limitation of observations is that these measures can only measure behaviours, because it is impossible to obtain reliable information about cognitive coping strategies on the basis of overt behaviours. The fourth assessment method, self-report questionnaires, is considered to be the most valid and


62

reliable source for obtaining information about coping in children over 8 years of age (Knapp et al., 1991). For adults, there are more than 30 self-report coping measures in use (for an overview see Aldwin, 1994, pp. 130-135). For adolescents, only about 10 coping measures have been developed (see Frydenberg, 1997, pp. 55-58), and for children under 12 years, nine coping measures are in use. In Table 2.2, relevant characteristics of nine self-report measures of childhood coping are described, such as the age group for which the coping measure was developed, type of stressful event, the operationalisation of coping. A tenth coping measure that assesses coping with asthma-related events in children between 8 and 13 years of age is the Asthma Coping Test (Colland, 1991; Colland & Fournier, 1990). This coping measure was not included in the discussion for the following reasons. First, this instrument is not a selfreport instrument but is actually a board game, in which two players (the child and the researcher) answer questions regarding coping with and attitudes towards asthma-related situations. Despite its value in gaining information about the child's coping strategies specifically with regard to asthma, it is too time-consuming to be used for large-scale research purposes. Secondly, the child's answers on coping questions are classified by the authors as 'good coping' or 'bad coping'. Thus, no coping factors were derived on the data of the sample of 195 children with asthma that were used for testing psychometric qualities of the scale (see Colland & Fournier, 1990). As was stated in Section 2.1, a definition of coping should not refer to its effectiveness. Coping instruments can be divided according to their conceptualisation of coping. One type of measures considers coping as a relatively stable personality characteristic, such as the children's version of the Miller Behavioural Style Scale (Miller, 1987a), the Children's Behavioral Style Scale (Miller, 1987b). This self-report questionnaire was designed to assess two coping styles in children, 'monitoring' and 'blunting'. A monitoring coping style refers to "the tendency to cognitively select, scan for, and attend to threatening cues" (Miller et al., 1995, p. 236), whereas ‘blunting’ was seen as ‘seeking versus not seeking distraction from threat’ (Bijttebier, 1998, p.12). Children are labelled as 'monitors' or 'blunters', thus coping is operationalised as an individual trait, and the characteristics of the stressful event are not taken into account.


Table 2.2

63

Overview of Self-Report Instruments on Childhood Coping

Authors

Name of the

Age

Type of Event

Coping Strategies

Instrument Boekaerts,

Student

Hendriksen & Maes, 1987

Coping Styles

10-12

Two academic

(1) planful problem solving

(1)

Stress and

events:

(2) social support

problem

Coping

(1) confrontation

(3) confrontational

-focused

Inventory

with failure

approach

(2) confrontation

(4) aggressive behaviour

with teacher demands

(5) evading activities

(2)

Two interpersonal

(6) behavioural distraction

emotion

events:

(7) cognitive distraction

-focused

(1) social isolation (2) identification with stress of others 'Some problem

(1) assistance seeking

for Children

that has upset you

(2) cognitive-behavioural

and Youth

or worried you in

problem solving

the last few

(3) cognitive avoidance

months'

(4) behavioural avoidance

Academic event:

(1) seeking social support

poor grades

(2) problem-solving/ Self-

Interpersonal

reliance

event:

(3) distancing

peer conflict

(4) internalising

Brodzinsky,

Coping Scale

Elias, Steiger et al., 1992

Causey

and

Dubow, 1992

Self-Report Coping Scale

10-15

10-12

(5) externalising


Authors

Name of the

64

Age

Type of Event

Coping Strategies

Instrument

Coping Styles

Dise-Lewis,

Life Events

12-14

125 stressful

(1) aggression

1988

and Coping

events, both major

Inventory

life events (e.g.,

things)

death of a parent,

(2) stress-recognition

(hit someone, throw

moving out of the

(cry, get someone's

house) and daily

advice)

hassles (e.g., 'you

(3) distraction

did something bad

- (do a hobby, go to a

or wrong', 'you

friend's house)

had to study for a

(4) self-destruction

big test')

- (smoke cigarettes, hurt self physically) (5) endurance - (try to forget it, watch TV)

Elwood, 1987

Stressor and

Grade 4

Grade 4: 7 major

Grade 4: 13 coping

Coping

Grade 7

events, 16 daily

responses

Response

hassles

Grade 7: 24 coping

Inventories

Grade 7: 8 major

responses

events, 24 daily hassles

Miller, 1987

Children's

6-15

Four stress

(1)

Behavioural

invoking

monitori

Style Scale

scenarios:

ng

1. doctor

(2)

2. broken lamp

blunting

3. principal 4. dentist


Authors

Name of the

65

Age

Type of Event

Coping Strategies

Instrument Rossman,

Child

1992

Perceived

Styles 6-12

“A time when you

(1) use of caregiver

felt bad or upset”

(2) distraction/avoidance

Coping

(3) distress

Questionnair

(4) use of peers

e

(5) self-calming (6) anger

Ryan-Wenger,

Schoolagers'

1990

8-12

“a time when you

(1) social support

Coping

felt bad, nervous,

(2) avoiding

Strategies

or worried about

(3) emotional

Inventory

something”

(4) distracting (5) cognitive (6) aggressive motor (7) physical exercise (8) aggressive verbal (9) relaxation (10) habitual (11) spiritual

Spirito, Stark & 1988

Williams,

Kidcope

Coping

8-12

a self-generated

(1) distraction

problem (selected

(2) social isolation

by the child) and a

(3) cognitive restructuring

standard problem

(4) self-criticism

(selected by the

(5) blaming others

researcher)

(6) problem-solving (7) emotional regulation (8) wishful thinking (9) social support (10) resignation


Authors

Name of the

66

Age

Type of Event

Coping Strategies

Instrument

Coping Styles

Van

Stress and

8-14

five critical

(1) cognitive coping

Veldhoven

Coping

exercise situations

- (problem solving,

1998

Exercise

reassuring thoughts)

Tests

(2) emotive coping - (expression of emotion, passive reaction)

Another type of measures operationalises coping according to the transactional view, thus as a situation-specific construct. All other measures listed in Table 2.2 belong to this type. As can be seen in the table, the coping strategies that were empirically derived vary considerably per coping measure. An explanation could be that each coping measure refers to a different stressful event. Some measures assess coping independently of the stressful event, because no connection was made between the stressful event and the coping strategy. Hence, the child reports which coping strategy he or she applies in response to an unspecified or self-defined stressor. An example is the Child Perceived Coping Questionnaire (Rossman, 1992), in which the child is asked to think about 'a time when you felt bad or upset'. Other examples are the Schoolagers' Coping Strategies Inventory (Ryan-Wenger, 1990), the Coping Scale for Children and Youth (Brodzinsky et al., 1992), Elwood's Stressor and Coping Response Inventories (1987), and Dise-Lewis’ Life Events and Coping Inventory (1988). Although the latter two questionnaires give the impression that the coping strategies refer to specific stressful events this is not the case. In both measures, the children are asked whether they applied each of the listed coping strategies across all events. A disadvantage of measuring coping independent of the stressful event is that no information is gained about the kind of event to which the coping strategies refer. Thus, the coping strategies measured are actually coping styles, because they refer to the child's preferred way of coping independently of the stressful event. Only three measures took into account the situational component of coping strategies by presenting the child with a specified stressful event. These are the Dutch Student Stress and Coping Inventory (Boekaerts, Hendriksen & Maes, 1987), the Self-Report Coping Scale (Causey & Dubow, 1992), and the Kidcope (Spirito, Stark & Williams, 1988). Situation-specific coping measures enable us to generate hypotheses about which coping strategy is most common in which stressful situation. All except one of the coping measures were especially developed for children with asthma. Only the


67

Kidcope has been examined on paediatric patients with a chronic disease (see Spirito, Stark, Gil & Tyc, 1995; Spirito, Stark & Tyc, 1994; Spirito, Stark & Tyc, 1995). 2.3.3. Conceptualisation of Social Support in Children Sarason, Sarason, and Shearin (1986) argued that supportive relationships provide a secure base that fosters a sense of personal worth in a child. This enables the child to cope with new encounters and with difficult tasks and problems. Social support is defined as "the existence or availability of people on whom we can rely, people who let us know that they care about us, value, and love us" by Sarason, Levine, Basham & Sarason, (1983, p. 127). The child’s family determines, to a large extent, the environment in which the child interacts with others, both in positive and negative ways. Hence, parents or other family members may be able to support the child adequately, buffering the effects of the stress the child experiences and enhancing his or her sense of autonomy (Pierce, Sarason, Sarason, Joseph & Henderson, 1996). On the other hand, an adult's attempts to provide support could be interfering rather than be supportive when the child’s sense of autonomy is violated. In this case, parental support serves as an additional stressor to the child (Eiser, 1994; Kaplan & Toshima, 1990; McNabb, Wilson-Pessano & Jacobs, 1986; Patterson & Blum, 1996). Studying social support in children with asthma may be especially important. Parents who are overprotective in response to their child's illness hinder the child’s independence and sense of autonomy. Until now, the study of social support among children who suffer from a chronic disease has received relatively little attention (Eiser, 1994). The potential detrimental effect of social support has been studied among chronically ill adults. The support from spouses may be helpful, but they may also patronise or overprotect them (Fiske, Coyne & Smith,1991; Suls, Green, Rose et al., 1997). Social support is, like coping, a multidimensional construct. First of all, a distinction can be drawn between the quantitative properties of the social network and qualitative properties. Quantitative properties refer to observable aspects of the social network, such as its size and density. Qualitative properties refer to the individual's evaluation of his social network, thus, his or her perception of the available or actually received support. Studies among adults have shown that someone’s satisfaction with social support is more important for someone’s well-being than the number of people one can rely upon (Sarason et al., 1983). Secondly, various functions of social support have been distinguished in the literature (see Cutrona & Russell, 1990). Cutrona and Russell (1990) proposed a set of five functions: (1) emotional support (referring to comfort and security, which gives a person the feeling that he or she is cared for by others) (2) social integration (referring to someone's sense of belonging), (3) esteem support (referring


68

to the bolstering of someone's sense of competence by other people), (4) tangible aid (referring to concrete instrumental assistance, e.g., financial or physical help) and (5) informational support (referring to advice or guidance concerning possible solutions to a problem). This distinction may be less relevant for children, because research has shown that children under 12 years of age do not distinguish social support according to its function. Instead, they distinguish social support to the provider, i.e., mother, father, sibling, friend, or teacher (Berndt & Perry, 1986; Cauce, Reid, Landesman & Gonzales, 1990; Dubow & Ullman, 1989; Wolchik, Beals & Sandler, 1989). For example, Dubow and Ullman (1989) set up a questionnaire for children between 9 and 12 years of age, which was supposed to measure emotional, informational, and tangible support. A factor analysis did not clearly support these three functions. The authors concluded that children at this age probably do not discriminate between different functions of social support. Dubow and Tisak (1989) suggested that the major support function of family and peers is esteem support, while teachers may be relied upon more for informational support, specific to school matters. In the research area of social support three models have been tested: the "direct effects" model, the "buffer" model, and the "mediating" model (see e.g., Quittner, 1992; Sandler, Wolchik, MacKinnon et al., 1997). According to the direct effects model, social support has beneficial effects on someone's psychosocial and physical functioning, regardless of his or her level of stress (Cohen & Wills, 1985). Thus, children who feel supported by significant others will be less likely to develop psychosocial problems. The stress-buffer model supposes an interaction between the level of stress and social support. When under stress, only children who experience sufficient social support will be protected from the negative impact of stress. There have been no systematic studies among chronically ill children testing either of these models. On the basis of a large body of studies among adolescents without a chronic disease, Sandler et al. (1997) concluded that substantial evidence has been found for the direct effects model as well as for the buffer model, when parental support was considered. Parental support was consistently associated with positive outcomes, such as few internalising and externalising problems, high self-esteem, and high academic performance. Studies among younger children mainly confirmed this conclusion. For example, a study among 361 healthy children (8-11 years) found evidence for the main effect model for social support on grade point average. Children who received much social support had higher grades in school (Dubow & Tisak, 1989). In constrast, the findings on the beneficial effects of peer support are mixed; some researchers have documented positive relationships between peer support and adjustment problems, whereas other studies showed the opposite (see Sandler et al., 1997 for a discussion). An explanation for this could be that peer support may have negative effects in the


69

absence of parental or adult support, as has been found by Wills (1990, cf. Sandler et al., 1997). Abundant evidence from studies among chronically ill adults has also supported the direct effect model, but not the stress-buffer model, according to a meta-analysis conducted of over 100 studies (Leppin & Schwarzer, 1990). One explanation for this finding may be that most studies included in this meta-analysis had a cross-sectional design, whereas a test of the buffer model necessitates a longitudinal design. Another explanation was recently provided by Komproe, Rijken, Ros et al. (1997). They suggested that received social support and available social support should be differentiated. Their hypothesis was confirmed by results from structural equation modelling on a sample of 109 women operated on breast cancer. Received social support had both direct and indirect effects, whereas available support only had direct effects. The direct effect of available social support as well as the indirect effects of received support appeared to be beneficial for the patients' well-being. However, the direct effects of received social support were detrimental for their well-being. This suggests that received support can only be helpful as long as it influences someone's coping process, i.e., by promoting certain coping strategies, such as stress management. The third model, in which social support plays a mediating role between a stressor and a person's functioning, seems to be most consistent with the extended model for coping with a chronic disease (Maes et al., 1996). According to this model, someone’s social support system functions as one of the resources a person may use when coping with a stressful event. Here, the interrelatedness between receiving and seeking social support becomes clear. Persons with high perception of social support, approach others for help based on their expectation that they are likely to provide help. Moreover, they may provide others with a clue that they are willing to accept assistance (Thoits, 1986). On the other hand, persons with low perception of social support may avoid asking others for help, because they fear being refused (Pierce, Sarason & Sarason, 1996). Schwarzer and Schwarzer (1996) argued that it is important to make a distinction between perceived social support and seeking support, both in theory and research. Whenever social support of chronically ill children has been the object of study, it has, in most cases, focused on the social support their parents receive, and the subsequent impact on the child's wellbeing. Research among families with a chronically ill or handicapped child has shown that these families have smaller social networks (e.g., Kazak & Marvin, 1984; Kazak, Reber & Carter, 1988; Quittner, 1991), with greater density. Kazak and Wilcox (1984) showed that a denser network—when network members know each other more intensely—was associated with greater parental distress. The question is whether a denser network led to more stress, or vice versa, whether parents with more


70

distress were inclined to ask only a few persons for help.

2.3.4. Measurement of Social Support in Children Self-report instruments for measuring social support in children are scarce. In general, research on social support in chronically ill children is hampered by poor research design (Eiser, 1994). Social support is often assessed using measures developed for healthy children. In addition, some researchers used instruments designed for another purpose. For example, Wallander and Varni (1989) operationalised ‘peer support’ by using the subscale ‘Social Competence’ of the Child Behavior Checklist by Achenbach and Edelbrock (1983). Only two measures were found to be developed especially for assessing social support in children, the Survey of Children's Social Support (Dubow & Ullman, 1987) and the Network of Relationships Inventory (Furman & Buhrmester, 1985). Both instruments are based on a theoretical framework, and empirically tested on a child population. The Survey of Children's Social Support is a 38-item self-report questionnaire for children between nine and eleven years of age. It intends to assess both qualitative and quantitative properties of social support, by means of scores on three subscales: (1) frequency of supportive behaviours available from the child's support network, (2) the child's appraisals of family, teacher, and peer support, and (3) the size of the child's social support network. The items of the first subscale were selected to include three functions of social support, namely emotional, informational, and tangible support, as these functions are commonly examined in the social support literature. However, the original factor structure of three functions could not be confirmed in a sample of 137 children (Dubow & Ullman, 1987). The three empirically constructed scales were labelled by the authors as 'emotional/informational support', 'emotional/esteem-enhancing support', and 'tangible support'. The second subscale was supposed to measure peer support, family support, and teacher support. This factor structure was confirmed on the basis of empirical findings (Dubow & Ullman, 1987). The Network of Relationships Inventory (Furman & Buhrmester, 1985) is developed for children 11-13 years of age, and assesses qualitative properties of social support. It consists of 30 questions, referring to ten relationship qualities: reliable reliance, enhancement of worth, instrumental help, companionship, affection, intimacy, relative power of the child and other, conflict, satisfaction, and importance of the relationship. The child answers each question on a five-point Likert scale with regard to mother, father, grandparent, teacher, friend, and sibling. Although the authors reported acceptable internal consistency for the scales, they did not report results of a factor analysis.


71

2.4. Empirical Support for the Extended Model In this section, Maes et al.’s (1996) extended model for coping with chronic disease is discussed using empirical findings from studies of children with asthma. This means that each variable specified in the model is discussed with respect to its relationships with other variables. Unfortunately, many studies did not include children with asthma as a separate group, but as part of a sample of chronically ill children. The findings from these studies do not necessarily carry over to children with asthma. Therefore, studies of children with other chronic diseases were only used in evidence, whenever studies of asthmatic children were not available. The numbers between brackets [] refer to the numbers in Figure 2.2. 2.4.1. Life events [1a] Life events have been studied in relation to psychological and school functioning in a study among children with asthma (n=81) by MacLean, Perrin, Gortmaker, and Pierre (1992). The children were asked to indicate whether several life events (such as moving, death of a family member) had occurred during the last six months, and how much negative stress they experienced. It was found that negative stress significantly predicted internalising behaviour problems as well as low school performance, assessed by means of the Child Behavior Checklist (Achenbach & Edelbrock, 1983). The occurrence of life events did not contribute to the prediction. This implies that children's appraisal of life events is more important than the occurrence per se. 2.4.2. Disease-related event [1b] Disease-related events refer to physical consequences of having asthma, thus to symptoms of asthma, such as breathing difficulties, to restrictions and prescriptions as a result of its management, such as being in the hospital, and to limitations in social opportunities, such as not being able to participate in sports or to go to school. A few studies examined some of these disease-related events among children with asthma, namely an asthma attack (Clark, Rosenstock, Hassan et al., 1988), a problem related to asthma (Ryan-Wenger & Walsh, 1994) and critical exercise situations (e.g., indoor running, jumping on a trampoline) (Van Veldhoven, 1998). 2.4.3. Appraisals [2] Appraisals of the child have been studied in terms of experienced emotions23, as well as in terms

23

This has been called ‘valence’ or stressfulness by Perrez and Reicherts (1992).


72

of subjective controllability of the disease-related event. Anxiety has most frequently been studied among children with asthma. It was shown that anxiety interfered with accurate labelling of asthmatic symptoms, and, consequently, less appropriate actions to deal with an asthma attack were initiated (cf. Fritz, Yeung, Wamboldt et al., 1996). In a study among 34 children with asthma (ages 9-15 years) (Baron, Lamarre, Veilleux et al., 1986), the children were categorised in one of three groups on the basis of their scores on the adapted Battery for Asthma Illness Behavior24: a high panic-fear group, a moderate panic-fear group, and a low panic-fear group25. It was found that children in the high panic-fear group experienced more asthma symptoms and received more medications, compared to children in the other two groups. Reported asthma symptoms and use of medication could not be explained by physiological data, such as lung function. Despite the small sample size, these results were consistent with those of a study among 200 adults with asthma (see Dirks, Kinsman, Jones et al., 1977, cf. Baron et al., 1986). Spirito, Stark and Tyc (1994) studied intensity of sadness, anxiety and anger in response to a hospital-related stressor among 54 children with various chronic diseases, including 7 children with asthma. They found that intense anxiety or sadness was associated with a high use of active coping and avoidant coping (especially wishful thinking). Intense anger was associated with less avoidant coping (especially social withdrawal). Thus, different emotions seem to elicit different coping strategies. The relationship between children’s sense of controllability and use of coping behaviours with regard to an asthma attack was studied by Clark, Rosenstock, Hassan, Evans, Wasilewski, Feldman and Mellins (1988). Children were asked to respond to the statement: "If I am going to be sick, nothing I do will stop me from getting sick". It was found that children whose sense of controllability was high were more likely to use self-management behaviours (i.e., problem-focused coping, such as use of medication). This relationship between sense of controllability and problem-focused coping with a disease-related event was also observed in studies among children with cancer (Weisz, McCabe & Dennig, 1994) and among chronically ill adults (Maes et al., 1996). Moreover, several studies among children and adolescents without a chronic disease have shown a similar relationship to the extent that children expressed more control over school stressors than over interpersonal stressors, and used more problem-focused coping to deal with the former than with the latter stressors (e.g., Causey & Dubow, 1992; Compas et al., 1986).

24

This measure was originally developed for adults by Kinsman, Dirks, and Jones, 1982. The authors speak about a 'high-panic-fear personality', but in their discussion they state that they did not find this trait to be stable in the children. 25


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2.4.4. Disease and Treatment Characteristics [3] Severity of asthma has been studied most frequently as an indicator of disease and treatment characteristics. Results regarding the impact of severity of asthma on the child's psychological and school functioning are contradictory. With respect to the school performance of children with asthma, Celano and Geller (1993) concluded in their review study that the importance of the severity of asthma remained unclear. The authors stated that this is probably due to the multiple and conflicting ways in which severity has been defined. Regarding psychosocial functioning, some authors found a negative relationship between severity of asthma and psychosocial functioning. For example, Butz, Malreaux, Eggleston et al. (1995) found that children with a high level of asthma symptoms were more than twice as likely to show behaviour problems compared to children with a low level of symptoms. MacLean, Perrin, Gortmaker, and Pierre (1992) reported that children with severe asthma had higher scores on behaviour problems and lower scores on social competence compared to children with mild or moderate asthma. However, in an earlier study (Perrin, MacLean & Perrin, 1989) a curvilinear relationship was found: Children with moderate asthma had lower scores on social competence, than children with mild and severe asthma. Other researchers found no relationship between severity and psychological or social functioning. Kashani et al. (1988) reported no relationship with psychiatric symptoms nor with selfconcept, and Eksi, Molzan, Savasir, and Güler (1995) reported no relationship with behaviour problems nor with social competence. Graetz and Shute (1995) differentiated between use of medication, number of monthly attacks, and number of hospitalisations as three indices of severity. They did not find any relationships between medication or attacks and the child’s social functioning. However, a significant correlation was found between number of hospitalisations and social functioning. Children who had been hospitalised frequently were disliked by peers more often, and were perceived by their peers as being more sensitive and isolated. These children also felt more lonely themselves. Explanations for these inconsistent findings are various. The most obvious ones are differences in assessment instruments and in characteristics of the sample. The inconsistencies might also be explained by the use of different classification schemes regarding the severity of asthma, as was already suggested by Celano and Geller (1993). Some authors based their index of severity on multiple indices. For example, MacLean et al. (1992) and Perrin et al. (1989) based asthma severity on three indices: frequency and type of medication used, frequency of asthma attacks, and days missed from school. Eksi et al. (1995) used four indices: number of attacks, symptoms between attacks, use of medication, and functional impairment. Other authors only considered one index, such as restriction in daily activity due


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to symptoms of asthma (Butz et al., 1995), use of medication (Graetz & Schute, 1995; Kashani et al., 1988), number of monthly attacks (Graetz & Schute, 1995), or number of hospitalisations (Graetz & Schute, 1995)26. Another explanation for the inconsistencies regarding the relationship between severity of asthma and the child’s functioning could be the different informants. In three studies (Butz et al., 1995; MacLean et al., 1992; Perrin et al., 1989) the parent reported on both severity and psychosocial functioning. However, in two other studies the parent was the informant on psychosocial functioning, whilst indices of asthma severity were based on the physician's ratings (Kashani et al., 1992) or on an objective classification scheme (Graetz & Shute, 1995). It may be assumed that ratings of severity and psychosocial functioning are contaminated when parental reports are used for both concepts. In other words, the parents' awareness of their child's symptoms of asthma may influence their ratings of psychosocial functioning. Another explanation was provided by Wamboldt, Fritz, Mansell et al.’s study (1998). Parents rated more internalising behaviour problems in children with severe asthma, whereas the children themselves did not rate themselves as having higher levels of anxiety, as compared to their peers. The authors explained this by stating that asthma severity is a more salient stressor to parents than to the children. Another disease characteristic that has been studied in relation to the child’s functioning is the duration of asthma measured as the elapsed time since the diagnosis ‘asthma’ has been made. This variable does not seem to be associated with psychosocial functioning, as Eksi et al. (1995) reported no relation with behaviour problems and social competence among a sample of 60 children with asthma, and Siefert, Wittman, Farquar & Talsma (1992) found no relation with depression, interpersonal functioning, and behaviour problems among 20 children with asthma. It has been suggested that children whose disease has been diagnosed longer ago have gained more experience with disease-related stress, which results in the use of different coping strategies compared to children who have been confronted with a chronic disease recently. No studies on the relationship between ‘time since diagnosis’ and coping strategies have been conducted yet on a sample of children with asthma. In a study among children with cancer (Smith, Ackerson, Blotchy & Berkow, 1990) it was found that children who were newly diagnosed with cancer used information avoidance as a coping strategy more frequently when undergoing spinal taps or bone marrow aspirations.

26

The use of three separate indices of severity in Graetz and Shute’s study was based on low intercorrelations.


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2.4.5. Demographic characteristics [4] Demographic characteristics such as age, gender, and socio-economic status of the parents (SES) have been studied in the literature. Age differences have been found in coping and social support among children with and without a chronic disease. Increasing age has been found to be associated with less problem-focused coping and with more emotion-focused coping, both in studies among healthy children (e.g., Brotman Band & Weisz, 1988) and in studies among chronically ill children (Brotman Band, 1990; Reid, Dubow & Carey, 1995; Spirito, Stark, Gil & Tyc, 1995). Around the age of twelve, children realise that certain problems cannot be changed, which is a cognitive coping strategy that fits the developmental stage they are in (the formal operational stage). Although these age trends have been found with regard to various stressors, one should not draw this conclusion too hastily. Bull and Drotar (1991) and Spirito et al., (1995) have drawn different conclusions with regard to different stressors. Adolescents with cancer in remission used more emotion-focused coping and less problem-focused coping than children between 7-12 years, but only in response to cancer-related events, and not to noncancer-related events (Bull & Drotar, 1991). An interaction effect was found between age and kind of stressful event in Spirito et al.'s study (1995) among 177 paediatric patients with various chronic illnesses (aged 7-18). Adolescents blamed others more often when confronted with a disease-related event, whereas younger children used this coping strategy more when confronted with a common stressor, such as a peer argument. In conclusion, age differences in use of coping strategies should be interpreted in the light of the kind of stressful event that is under investigation. Age trends with regard to social support have been observed among healthy children between 6 and 12 years of age (Cauce, Reid, Landesman, Gonzales, 1990). Emotional support from friends increases, whilst emotional support from teachers decreases with older age. In addition, informational support from teachers increases. Emotional and informational support from parents remains relatively high and consistent among all ages, and informational support from friends remains steady throughout the years. Moreover, support from siblings remains more or less the same, whereas conflicts with siblings increase over the years. It is assumed that these developmental trends also apply to children with asthma, although differences between healthy and asthmatic children may exist concerning their specific needs regarding social support. No studies among children with asthma have been conducted yet. Gender differences have been observed in children without a chronic disease with regard to appraisals, use of coping strategies, needs of social support, self-concept, and psychosocial functioning. Girls tended to report more distress when confronted with a problem (Rossman, 1992), and more


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worries in various areas such as school, friendships, and personal health (Lewis, Siegel & Lewis, 1984; Rossman, 1992; Silverman, La Greca & Wasserstein, 1995). In addition, girls seek more social support than boys when dealing with various problems (Brodzinsky et al., 1992; Rossman, 1992). In a study among 481 children without a chronic disease, girls used more seeking support and problem solving, whereas boys used more distancing and internalising when confronted with poor grades and peer argument (Causey & Dubow, 1992). Boys and girls also differ in their need for intimacy in relationships (Bryant, 1994). Bryant (1985) found that girls were more likely than boys to engage in intimate conversations with peers, adults and pets, and Furman & Buhrmester (1985) reported that girls experienced more intimacy, affection and enhancement of worth in relationships with friends and their mothers. There is also strong evidence that girls are more inclined than boys to seek help and emotional comfort from others and to be more comfortable with the help they receive (Belle, 1989). This was supported by Dubow and Ullman's study (1989), who found that girls listed more members of their network as providers of social support, and reported higher levels of receipt of total supportive behaviours. The effects of social support on boys' and girls' social-emotional functioning also appears to be different (Bryant, 1994). For example, in Bryant’s study (1985) intimate involvement with grandparents was positively related to expressed empathy in girls, but not among boys. Gender differences have also been found regarding the internal resource ‘self-concept’. Boys consistently reported a higher selfconcept than girls (Harter, 1985). Gender differences in psychosocial functioning have been reported throughout the literature. On the basis of studies on normative populations it can be concluded that boys show more externalising behaviour (e.g., aggression), whereas girls show more internalising behaviour (e.g., depressive symptoms) (Merrell & Dobmeyer, 1996; see also Verhulst & Koot, 1992, p. 28). Studies among chronically ill children support these gender differences. Chronically ill boys reported a higher self-concept than girls (Holden, Chmielewski, Nelson, Kager & Foltz, 1997), and boys with asthma showed more externalising behaviour than girls (Eksi et al., 1995). Spirito, Stark, Gil, and Tyc (1995) found that chronically ill girls were more inclined to seek social support and emotional regulation as coping strategies when confronted with a disease-related event, whereas boys used more cognitive restructuring and self-blame. Gender differences were not found in reaction to a common problem. Thus, gender differences should be interpreted in the light of the kind of stressful event that is being investigated. Socio-economic status (SES) has mainly been studied in relation to a child's psychosocial or school functioning. Celano and Geller (1993) concluded in their review article with regard to school


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performance of children with asthma that low SES is detrimental to the child's school and school functioning. More specifically, in Gutstadt et al.'s study (1989) low SES was associated with low reading scores and mathematics scores of children with asthma, and in Fowler et al.'s study (1992) low SES was associated with higher risk of grade failure. On the other hand, Lavigne and Faier-Routman (1993) concluded on the basis of their meta-analytic review of studies among children with various chronic diseases that socio-economic status was less important to the child's adjustment compared to family functioning. Socio-economic status was also studied in relation to the child's asthmatic symptoms (Meijer, 1994; Meijer, Griffioen et al., 1995). They found that fathers of children with controllable asthma had a higher professional level than fathers of children with uncontrollable asthma had. 2.4.6. External resources [5] Social support has been examined most extensively as an external resource. Although it has been suggested that social support in children with a chronic disease may be an important factor in buffering stress (Eiser, 1994; Patterson & Blum, 1996), this hypothesis has not yet been confirmed in empirical studies. Most studies in child health have focused on direct effects of social support on the child’s functioning. Kessler (1991) showed in a study among children with a chronic disease that perceived social support and psychosocial problems were negatively related. Kaplan, Chadwick, and Schimmel (1985) found that adolescents who tended to be in poor control of their diabetes were highly satisfied with their social support system. It may be assumed that these adolescents violated medical prescriptions in order to join their peer group. This result highlights two points. First, medical or behavioural prescriptions may interfere with a child's social life, and secondly, hypotheses about relationships between social support and children's functioning are dependent upon the outcome measure being measured. More specifically, in Kaplan et al.'s study (1985) a negative relationship was found between satisfaction with social support and metabolic control. On the other hand, adolescents in poor control may feel more integrated into their peer group, thus a positive relationship might have been found between satisfaction of social support and psychological well-being. No studies conducted among chronically ill children have been found that tested the mediating or moderating effect of social support. Based on studies among healthy children, Compas (1987) concluded that results are conflicting with regard to interactive effects of social support. Another external resource that is especially relevant for children is family functioning, consisting of parents and siblings. Miller and Wood (1991) emphasised that families can either support or hinder the child's psychosocial adaptation to asthma. Meijer et al. (1995) showed that families of children with uncontrollable asthma (thus, children with frequent symptoms despite medication) were


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characterised by high cohesion and rigid adaptation, and their parents were worse problem solvers. High family conflict was related to the child's noncompliance with the medical prescriptions regarding asthma (Christiaanse, Lavigne & Lerner, 1989) and externalising behaviour problems in the child (Eksi et al., 1995; Hamlett, Pellegrini & Katz, 1992). Mother’s satisfaction with social support was also related to the child’s functioning. When their mothers perceived less adequate social support, children showed more behaviour problems (Hamlett et al., 1992), and were more often awake at night due to asthma symptoms and were restricted in daily activities (Butz et al., 1995). 2.4.7. Internal resources [6] In two reviews of studies among children with a chronic disease (Lavigne & Faier-Routman, 1993; Patterson & Blum, 1996) the following internal resources were identified as risk factors for poor psychosocial adjustment: low self-esteem, intellectual impairment, and a difficult temperament. Unfortunately, children with asthma were not studied as a separate group, thus no definite conclusions could be drawn. Internal resources specifically related to asthma, such as a trait-like way of coping with asthma in daily life, have not yet been studied in relation to coping with specific asthma-related stressors among children with asthma. In a study among 379 adults with asthma (Maes & Schlösser, 1987) coping was studied as a trait, namely coping with asthma in daily life, when free of symptoms. Three coping traits were distinguished: maintaining a restrictive lifestyle, focussing on asthma and hiding asthma. It was found that persons who maintained a restrictive lifestyle were absent from work more often. No relationships were found between coping traits and subjective well-being. 2.4.8. Consequences [7] Coping effectiveness or the consequences of the coping process could be measured as shortterm or long-term effects. A well-known meta-analysis performed by Suls and Fletcher (1985) on studies of healthy adults permits the conclusion that ‘avoidance’ is the best coping strategy when confronted with short-term threats, whereas ‘approach’ is a more effective way to cope with stress that persists over time. Their study reaffirms the importance of differentiating between short- and long-term consequences when measuring the effectiveness of coping. Short-term effects are often measured as self-reported effectiveness of a particular coping strategy in terms of a reduction of immediate stress (Snyder & Dinoff, 1999). Short-term effects of coping have not been studied much, and no studies among children with asthma were found. In Tyc et al.'s study (1995) a sample of children with cancer was divided into two subgroups on the basis of self-


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reported coping efficacy. The most frequently used coping strategies of 'successful copers' to deal with nausea were 'problem solving' and 'seeking support'. A study that measured the short-term effectiveness of coping in children and adolescents with diabetes (Reid, Dubow & Carey, 1995) showed that ‘avoidance’ when confronted with diabetes-related events (such as a fingerprick), was related to a lower level of self-rated effectiveness, whereas ‘approach’ was not related. No significant relations were found between effectiveness and coping with events not related to diabetes, such as a peer argument. This study shows that the type of the stressful event should be taken into account when studying the relationship between coping and short-term effects. Long-term effects of coping refer to the individual’s psychological, social or physical functioning. Although long-term effects have been studied extensively, studies with samples of children with asthma are rare. In fact, most studies involved children with diabetes (Brotman Band, 1990; Grey, Cameron & Thurber, 1991; Hanson, Cigrang, Harris et al., 1989; Reid, Dubow & Carey, 1995). These studies pointed to the detrimental effects of using ‘avoidance’ as a coping strategy in response to diabetes-related events. Avoidance was associated with lower grade point average and more (selfreported) depression (Reid et al., 1995), with poorer social adjustment (Grey, Cameron & Thurber, 1991), and with poor treatment adherence (Hanson et al., 1989). A study among children with cancer confirmed this result (Tyc et al., 1995). ‘Avoidance’ when confronted with a cancer-related event was associated with (self-reported) anxiety and depression (but not to externalising behaviour problems reported by the parents). In all of these studies, the use of approach as a coping strategy was not predictive of any outcomes. An exception is Brotman Band’s study (1990), in which children with predominantly problem-focused coping were better adjusted to their diabetes. Although these findings suggest that avoidant coping has negative effects, it is not appropriate to draw a general conclusion at this point. In the preceding sections it was shown that it is important to include the type of event that was under investigation. A tentative conclusion is that avoidance is harmful in the long run when confronted with situations related to diabetes, pain, and nausea, whereas the use of problem-focused coping does not seem to be as important. The importance of considering the characteristics of the stressful events when examining coping effectiveness was highlighted by results found in studies among children without a chronic disease. Compas, Malcarne and Fondacaro (1988) revealed that the intensity of reported stress was low when there was a match between the children's perception of control and the selected coping strategy. More concretely, children who reported low perceived controllability experienced less stress when they used emotion-focused coping than when they tried to handle the situation with problem-focused coping.


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Conversely, in Ebata and Moos' study (1991), adolescents who reported high control experienced less stress when they used problem-focused coping instead of emotion-focused coping. These relationships were still significant in longitudinal analyses, over a period of one year (Ebata & Moos, 1994). These findings suggest that children bring their coping efforts in line with their perception of controllability, thus they apply problem-focused strategies when the event is controllable, and emotion-focused strategies when the event is uncontrollable. Thus, a good fit between the extent of controllability and coping strategy is beneficial, rather than the coping strategy in itself. Based on the results among children without a chronic disease, it is assumed that this conclusion would also apply to children with asthma. Further research is needed to confirm this hypothesis. Other studies also showed the importance of including other variables of the model as well, when studying coping effectiveness. In Rossman's study (1992) among 172 healthy children between 6 and 12 years old, it was found that stress mediated the relationship between coping and self-worth. More specifically, the coping strategy 'distraction/avoidance' made the child more vulnerable to low self-worth when stress was higher, whereas the coping strategies 'use of caregiver' and 'self-calming' acted as compensatory moderators of the negative relationship between stress and self-worth. Maes and Schlösser (1987) found that the inclusion of ‘trait anxiety’ and ‘optimism’ (as internal resources) accounted for most of the variance of well-being in adults with asthma (n=379), whereas coping strategies when confronted with an asthma attack did not contribute to the explanation. More specifically, although the coping strategy 'reacting emotionally' correlated high with ‘well-being’ (r= .45), it did not contribute much to the prediction when ‘trait anxiety’ and ‘optimism’ were included as well. All studies discussed so far have had a cross-sectional design, meaning that both predictor variables and outcome variables were measured at the same time. Two studies among healthy children were found with a longitudinal design (DuBois, Felner, Brand et al., 1992; Dubow, Tisak, Causey et al., 1991). In Dubow et al.’s study (1991) coping was conceptualised as social problem-solving skills. Stressful life events, social problem-solving skills and social support were studied as predictors of behavioural and school functioning which were measured 2 years later. It was found that life events did not contribute to later adjustment, whereas increases in social support and social problem-solving skills were related to improvement of adjustment. However, DuBois et al.’s study (1992) contradicted these results. Life stress, but not social support, contributed significantly to later school performance. More longitudinal data are needed to examine the relation between coping with stress, social support and subsequent psychosocial adjustment.


2.5

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Discussion and Implications for the Study In this chapter the extended model of coping with chronic diseases by Maes, Leventhal, and De

Ridder (1996) was evaluated for its usefulness for children with asthma. Studies were reviewed that examined two or more variables specified by the model among a group of children with asthma, or, whenever not available, among children with other chronic diseases. Most studies examined bivariate relationships. As is evident from the literature on structural equation modelling (e.g., Bollen, 1989) correlations between two variables without taking into account other variables, may cloud the interrelatedness of the various variables within the model. Nevertheless, certain relationships specified in the model were studied extensively, such as the relationship between coping and psychosocial functioning. It was concluded that studying bivariate relationships between coping and outcome is not meaningful, because there are no universally adaptive coping strategies that are suitable for all persons in all situations, as had already been argued by Lazarus and Folkman (1984), and acknowledged by several authors (e.g., Compas, Worsham & Ey, 1992; Reid, Dubow & Carey, 1995). Thus the question ‘which coping strategies are effective and which are not?’ is better replaced by Which coping strategies are effective in which situations for which individuals under what conditions, and for which outcomes? Studies among children without a chronic disease and among adults with asthma made clear that other variables, for example, characteristics of the stressful event, need to be included when studying the relationship between coping and its consequences. Although these studies showed that several variables of the model are important, no conclusions can be generated at this point about the validity of the model as a whole. This study is the first in its kind that examined more than three variables specified by a theoretical model. It is exploratory, because no hypotheses could be generated for children with asthma on the basis of the studies conducted so far. Also, the question posed above is too complex to be answered on the basis of one single study. The theoretical model served as a guideline for the choice of certain variables, rather than providing hypotheses on certain relationships between the variables. In Figure 2.3 the conceptual model that guided this study is depicted. Next, each theoretical construct of the model is discussed with regard to its implications for this study.


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3

5

CHARACTERISTICS OF ASTHMA 1b

1a

ASTHMA-RELATED EVENT

7

WELL-BEING AT SCHOOL

7

BEHAVIOUR PROBLEMS

7

SCHOOL PERFORMANCE

7

SCHOOL ABSENTEEISM

SOCIAL SUPPORT

2

EMOTIONAL RESPONSE

COPING STRATEGIES

SCHOOL-RELATED EVENT

4


Figure 2.3

6

COPING WITH ASTHMA IN DAILY LIFE

Conceptual Model that guided the Study

2.5.1. Disease-related Event [1b] and Life Events [1a]: Selection of stressors Asthma is considered to be a major source of stress for a child, as was discussed in Chapter 1. ‘Shortness of breath’ was chosen as an example of a disease-related event, because this is one of the most frequent and stressful events for children with asthma (Kohlman-Carrieri et al., 1991). In addition, school is also viewed as a source of stress to children (e.g., Elias, 1989). School-related events were considered as an operationalisation of the theoretical concept ‘other life events’. ‘Problems with school work’ and ‘rejection by classmates’ were chosen as examples of school-related events, because these were reported as stressful, according to Dutch studies among fifth and sixth graders (Hendriksen, 1990; Hendriksen & Boekaerts, 1988). Repetti, McGrath, and Ishikawa (1999) considered the stressful situations ‘problems with peers’ and ‘problems with school work’ as the most important in childhood, because almost all children will be exposed to these stressors at some point, they recur on a daily basis, and there is growing evidence that these stressors are associated with important childhood outcomes (p. 345). Poor peer relationships act as chronic stressors that are associated with feelings of loneliness, and this may lead to adjustment problems in the child (Parker & Asher, 1987, 1993, cf. Repetti, McGrath, and Ishikawa, 1999). Although actual academic failure is associated with behaviour and other psychosocial problems in the child, research has consistently shown that children’s perceptions of academic failure are more important predictors of negative outcomes in the child (see Repetti et al., 1999 for an overview of studies). In addition, these stressors were selected on the basis of the expectation that children with asthma have a higher risk of being confronted with these stressors than children without asthma. From their higher rates of school absenteeism (e.g., Groot, De Boer & Baecke, 1992; Lako, 1983) it was expected that children with asthma experience more problems with school work, such as failure and work overload, because they have to catch up with school work every time they return after a long


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absence from school. In addition, absence from school interrupts friendships, which makes them vulnerable to social isolation. Also, because they have something unusual, namely their disease, they are more prone to being rejected by peers (Pless & Pinkerton, 1975; Ross & Ross, 1984). 2.5.2. Appraisals [2] and Coping Strategies: Situation Specificity The choice of Lazarus and Folkman’s model implies the choice of measuring stress (appraisals) and coping as situation-specific constructs. It was shown that both age and gender differences with regard to use of coping strategies should be viewed in the light of the kind of stressful event under study. Although most researchers in child health accepted Lazarus and Folkman’s model as a theoretical background, they did not always adhere to the situation specificity of the measured concepts. Although coping is often assessed in response to a specific situation (see Table 2.1), the reference to specific situations was dropped in the statistical analyses. In this way, children were characterised by their coping style instead of by their use of certain coping strategies in response to specific stressors. When coping strategies are assessed by means of stressors, chosen by the child, it is impossible to distinguish between situational coping and the child's preferred coping style. For instance, children with an avoidant coping style may be more inclined to choose an uncontrollable event as the problem to which they must respond (Spirito et al., 1995). Thus, although coping was assessed in response to a specific situation, its validity as a situation-specific construct is questionable. In order to assure acceptable validity of situational coping strategies, the children in this study were presented with specific school-related and disease-related events, chosen by the researchers. 2.5.3. Disease and Treatment Characteristics [3]: Characteristics of Asthma The effects of asthma severity on the child's experience of stress as well as on his psychosocial and school functioning remained unclear. One of the reasons is that severity of asthma has been measured in various ways. Some authors assessed severity in subjective terms, such as complaints about asthma, whereas others used objective measures, such as number of hospitalisations and medication. No studies used physical measures, such as lung function. Several authors suggested measuring severity in terms of lifestyle interruptions that limit opportunities for social interaction (La Greca, 1990a; Thompson & Gustafson, 1996). Another suggestion by Meijer et al. (1995) is to measure severity in terms of controllability. A child with uncontrolled asthma is a child who experiences attacks, despite all available conventional medications. It may be argued that operationalising severity in terms of the impact on the child's physical condition (symptoms, hospitalisation) is more relevant in behavioural sciences, in which studying the


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psychological impact of asthma on the child and his family is the main object of study. This argument was followed in this study. The impact on the child’s physical condition was measured by means of parental reports on asthmatic symptoms, number of trigger factors, hospitalisations and visits to the doctor. As was already argued in Chapter 1, these measures were not considered as an operationalisation of severity, but as asthma characteristics. 2.5.4. Demographic Characteristics [4]: A Restricted Age Range The developmental level of children appeared to be an important issue in several respects. It was shown that children under the age of twelve coped differently with various stressors and have different social support requirements, compared to adolescents. The effectiveness of children's coping strategies also depended on their developmental level. These conclusions were based on studies with a cross-sectional design, which implies that age differences were studied instead of developmental trends. Longitudinal studies are needed to validate these conclusions. In addition, it has been recommended to study more cohesive developmental groups, (e.g. La Greca & Lemanek). Diverse age groups in the same study make it extremely difficult to obtain an adequate assessment. In this study, the developmental level was taken into account by restricting the age range of the respondents (8-12 years). A restricted age group limits the variability in developmental tasks and processes (Flanery, 1990). Children between the ages of eight to twelve years are confronted with the same developmental tasks, which are centred on achievement at school and relationships with other children (Havighurst, 1972). In addition, age differences between 8 to 12 years were not found with regard to coping (e.g., Causey & Dubow, 1992), nor with regard to perception of social support (Dubow & Ullman, 1989). 2.5.5. External Resources [5]: Social Support Studies of social support among children with a chronic illness, and specifically among children with asthma are lacking. The few studies that were conducted only took the parents’ viewpoint into account. However, on the basis of studies among healthy children and among adults with a chronic illness it is evident that social support plays an important role in stress research. Studying social support among children with a chronic illness may be especially important, because their needs may be different from those of children without a chronic disease. Social support is a multidimensional construct, which means that various distinctions could be made. Two distinctions appeared to be important, between quantity and quality of support, and between perceived support and seeking support. For children, the distinction in functions was less important than the distinction in providers. For this study, it was


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decided to measure the child’s perception of quantity and quality of social support with regard to significant persons for a child at this age, thus parents, teacher, peers and siblings. Seeking social support was included as one of the coping strategies. 2.5.6. Internal resources [6]: Coping with Asthma in Daily Life Self-esteem, intellectual capabilities, and temperament have been examined as internal resources in studies on determinants of the psychosocial and school functioning of children with a chronic disease. For this study it was decided not to include such general measures of internal resources, but to study an internal resource related to asthma, such as a child’s traitlike way of coping with asthma in daily life (when not experiencing symptoms of asthma). In a study among adults with asthma, coping with asthma in daily life was important in explaining differences in psychosocial functioning, in addition to coping strategies when confronted with shortness of breath (Maes & Schlösser, 1987). It was decided to study coping with asthma in daily life as an example of internal resources of the child, in order to see whether the conclusions based on a sample of adults also apply to children with asthma. 2.5.7. Selection of Coping and Social Support Measures Relationships between predictor variables and outcome measures are often contaminated when the same informant is used for both (Slavin & Compas, 1989). For example, in Reid et al.’s study (1995), children were the source of information on both coping and depression. This overlap in information leads to inflated correlations (Zeidner & Saklofske, 1996). In this study, this problem was overcome by using self-reports of the child for the measurement of predictor variables, and reports of parents and teachers as sources of information for outcome measures. Parental reports reveal as much about the parent-child interaction as about the child's behaviour (Eiser, 1990). Hence, outcome variables were also measured by means of child self-reports and teacher reports. Children's thoughts and feelings about themselves and internal states are best obtained by means of self-report (Flanery, 1990; La Greca, 1990b). Therefore, it was decided to use children’s self-report on their perception of stress, coping, and social support. Three criteria were used when selecting appropriate self-report measures: (1) the measures had to be especially developed for children, (2) coping and social support had to be measured as situation-specific constructs, and (3) the measures had to be appropriate among samples of children with asthma. Three coping measures took into account the situational component by including specified stressful events. These are the Dutch Student Stress and Coping Inventory (Boekaerts, Hendriksen & Maes, 1987), the Self-Report Coping Scale (Causey & Dubow, 1992), and the Kidcope (Spirito, Stark &


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Williams, 1988). None of these measures included coping strategies with regard to an asthma-related stressor. Moreover, none of them was especially developed for children with asthma, although the Kidcope has been used on children with various chronic illnesses. Therefore, it was decided to construct a new coping measure, especially for children with asthma, based on these three questionnaires. None of the social support measures measured social support as a situation-specific construct. Therefore, it was decided to construct a social support measure. The construction of the coping and social support questionnaires is described in the next chapter.

Construction of the questionnaires

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Chapter 3 Construction of the Questionnaires 3.1. Introduction For the purpose of this study, questionnaires were needed that met the following requirements: (1) they had to be self-reports of children between 8 and 13 years of age; (2) they had to measure stress, coping, and social support as situation-specific constructs; (3) they had to include both school-related and asthma-related stressors. As none of the existing questionnaires met all requirements (see Chapter 2; Sections 2.3.2, 2.3.4, 2.5.7), three self-report instruments for children were developed. Their construction and evaluation occurred in four phases. During the first phase the first versions of the questionnaires were constructed on the basis of other questionnaires and the literature (see Section 3.1). During the second phase, the first versions were evaluated for comprehensiveness on the basis of a pilot study among children with and without asthma (Section 3.2). The revised versions of the constructed questionnaires were evaluated with respect to their structure and reliability, on the basis of a sample of primary school children (Phase III), and a sample of children with asthma (Phase IV).

3.2. Phase I: Construction of a First Version of the Questionnaires In order to be able to answer the research questions, the following concepts had to be measured: (1) school-related stressors; (2) asthma-related stressors; (3) emotional response; (4) coping strategies; (5) coping with asthma in daily life; (6) perceived social support. Three questionnaires were constructed to measure these concepts. (I)

The Stress and Coping Questionnaire for Children (school and asthma version) (Boekaerts & Röder, 1995), measuring the occurrence of school-related and asthma-related stressors; emotional responses and coping strategies when confronted with these stressors;

(II)

The Asthma Coping Questionnaire for Children (Boekaerts & Röder, 1995), measuring coping with asthma in daily life;

(III)

The Social Support Questionnaire for Children (Boekaerts & Röder, 1995), measuring perceived social support.


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In this section, the construction process of each questionnaire is described. The first versions of these questionnaires were based on an investigation of existing self-report instruments for children. Each questionnaire is discussed in detail by presenting definitions and operationalisations of the measured concepts. 3.2.1. The ‘Stress and Coping Questionnaire for Children’ - First Version The Stress and Coping Questionnaire for Children (school and asthma version) (Boekaerts & Röder, 1995) was based on the Student Stress and Coping Inventory, developed by Boekaerts, Hendriksen, and Maes (1987) (see Hendriksen, 1990). Three concepts are measured (1) stressful events or stressors27, (2) emotional response or experienced stress28, and (3) coping strategies. The school version consists of stressors taken from the school area, and the asthma version consists of a stressor taken from the daily life of a child with asthma. It was decided to measure stress and coping strategies as situation-specific constructs, for two reasons. First, the choice for a transactional model implies measuring stress and coping as situation-specific constructs (Lazarus and Folkman, 1984). Secondly, it has been suggested that children's self-reports can best be obtained at the 'middle level', at which questions are concrete and refer to specific situations (Boekaerts, 1996; Flanery, 1990; La Greca, 1990b). Operationalisation: Stressors Stressors refer to ‘daily hassles’, and were defined as "irritating, frustrating, and distressing demands and troubled relationships that plague us day in and day out" (Lazarus & DeLongis, 1983, p.247). The children were presented with stressors, instead of being asked to identify a stressor themselves (also called a ‘personal stressor’). Prescribed stressors (also called ‘standard stressors’) allow comparisons among children on experienced stress and coping strategies. Three stressors were selected for the school version: (1) problems with school work, (2) rejection by peers, and (3) conflict with adults. The selection of these stressors was based on the expectation that children with asthma have a higher risk of being confronted with these stressors than children without asthma. First of all, it was expected that children with asthma experience more problems with school work, such as failure and work overload, due to their higher rates of school absenteeism (e.g., Groot, De Boer, & Baecke, 1992; Lako, 1983). Secondly, children with asthma are more prone to bullying by 27

In this thesis, the term 'stressor' refers to a potentially stressful event for an individual. In this thesis the term 'stress' refers to the emotional response experienced by an individual when confronted with a stressor. 28


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peers, because they have something unusual, namely their disease (Pless & Pinkerton, 1975; Ross & Ross, 1984). Thirdly, children with asthma are confronted with a medical regimen, such as taking medication and avoiding allergens. At the age of 8-12, compliance to this regimen is usually reinforced by adults, which forces them to be involved with adults more often then their peers. Each stressor was covered by two situation descriptions. Problems with schoolwork consisted of

'failure in the

classroom'29 and 'too much school work'3. Rejection by peers consisted of 'being bullied at school'3 and 'not allowed to join in play at school’3. 'Authority conflict' consisted of 'being constrained by the teacher' and 'being constrained by parents'. With regard to the asthma version, Shortness of breath was chosen as a disease-related stressor, following the Asthma Coping Questionnaire for Adults (Maes, Schlösser, & Vromans, 1987). Other reasons for this choice were that it is a well-delineated situation that refers explicitly to having asthma. The two situation descriptions are 'I am short of breath in the classroom' and 'I am short of breath at home'. The child was asked to rate the frequency of occurence during the last few months on a fourpoint Likert-scale (1= never; 2= once; 3= more than once; 4= more than ten times). Operationalisation: Stress Stress was defined as: "Psychological stress is a particular relationship between the person and the environment [the stressor] that is appraised by the person as taxing or exceeding his or her resources and endangering his or her well-being" (Lazarus and Folkman, 1984, p.19; words in brackets added by the author). In Lazarus and Folkman's theoretical model, stress is the result of the primary cognitive appraisal process, which is experienced by the individual as emotions (Lazarus, 1993). Consequently, it was decided to operationalise experienced stress in terms of the intensity of the emotions anger, anxiety, and sadness. For each situation description, the child was asked about how angry, anxious, and sad he or she was. Children under twelve years of age may have problems labelling their experience of stress as being angry, anxious, or sad. Therefore, a question was added that referred to a general feeling of being upset, called 'annoyance'. Children could rate their answers on four-point Likert scales, ranging from (1) not at all, (2) somewhat, (3) rather, (4) very much. For the younger children, visual cues were added in the form of little blocks that expanded in number with more intense emotions. Operationalisation: Coping strategies 29

These descriptions were extracted from the Student Stress and Coping Inventory (Boekaerts, Hendriksen, & Maes, 1987).


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Coping strategies were defined as: "constantly changing cognitive and behavioral efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person" (Lazarus & Folkman, 1984, p.141). For the operationalisation of coping strategies the following self-report instruments were used (see Chapter 2.6): the Student Stress and Coping Inventory (Boekaerts, Hendriksen, & Maes, 1987), Causey and Dubow's Self-Report Coping Measure for Elementary School Children (1992), and the Kidcope (Spirito, Stark, & Williams, 1988). Seven coping strategies were selected: (1) distraction, (2) social withdrawal, (3) self-criticism, (4) problem-solving, (5) seeking social support, (6) emotional expression, and (7) aggression. Each coping strategy was represented by two items in the questionnaire. Coping items for the asthma version were based on two studies, in which children's responses to shortness of breath were described (Kohlman-Carrieri, Kieckhefer, Janson-Bjerklie, & Souza, 1991; Ryan-Wenger & Walsh, 1994). In order to ensure comparibility of coping strategies across the various stressors, items were formulated as similarly as possible in each situation description. The full translation of the items is printed in Appendix A.1. As can be seen there, it was not possible to formulate the items on 'Problem solving' in a similar way in each situation description. Parallel to the 'Student Stress and Coping Inventory' (Boekaerts, Hendriksen, & Maes, 1987) the items were formulated in statements instead of questions, such as 'I cry' instead of 'Are you crying?' The children were asked whether they (1) almost never, (2) sometimes, (3) often, or (4) almost always, used the described coping behaviour in each stressful situation. 3.2.2. The ‘Social Support Questionnaire for Children’ - First Version The Social Support Questionnaire for Children (Boekaerts & Röder, 1995) was developed to assess quantity and quality of social support from significant others as perceived by the child. Social support was defined as: "the existence or availability of people on whom we can rely, people who let us know that they care about us, value, and love us" (Sarason, Levine, Basham, & Sarason, 1983, p. 127). The operationalisation of social support was based on the Student Perceived Social Support Questionnaire (SPSSQ) and the Need for Social Support Questionnaire (NSSQ) for children between the ages of 10 and 14 years (Boekaerts, 1987; Boekaerts & Seegers, 19?). Basically, these parallel forms are intended to measure perceived and needed didactic and emotional support from the teacher, classmates, parents, and others in classroom situations. It was intended to measure social support in this study as a situation-specific construct. Therefore, in each stressful situation of the Stress and Coping Questionnaire for Children two questions were added, one referring to needed social support, the other to perceived social support. More


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specifically, the child was asked: 'Whom would you like to tell what happened?' (needed social support), and 'Who could help you feel any better?' (perceived social support). Both questions were answered with regard to the teacher, classmates, parents, and others, and rated on a four-point Likert scale: (1) almost never, (2) sometimes, (3) often, (4) almost always. 3.2.3. The ‘Asthma Coping Questionnaire for Children'- First Version The Asthma Coping Questionnaire for Adults developed by Maes, Schlösser and Vromans (1987) was used as a basis for the children's version. Coping with asthma in daily life could be described as the child's behaviours, emotions, and thoughts with regard to the management of asthma in everyday life when not suffering from shortness of breath. Similarly to the Asthma Coping Questionnaire for Adults, this concept was operationalised in three coping traits, namely (1) maintaining a restrictive lifestyle, (2) focusing on asthma in daily life, and (3) hiding asthma in daily life (see Maes & Schlösser, 1988). Fifteen items were selected from the adult questionnaire (see Appendix A.2) Examples of items are: 'I take my medication as the doctor has told me' (Maintaining a restrictive lifestyle). 'I worry about my asthma' (Focusing on asthma in daily life). 'I try to forget that I have asthma' (Hiding asthma in daily life). The children were asked whether the presented items (1) almost never, (2) sometimes, (3) often, or (4) almost always, applied to them.

3.3. Phase II: A Revised Version of the Questionnaires: Results of the Pilot Study The goal of the pilot study was to examine whether the children understood the wording of the questions, and, consequently, to revise the first versions of the questionnaires. 3.3.1. Subjects The sample of the pilot study consisted of two groups. One group of 186 children was drawn from two primary schools from cities in the west of the Netherlands, one in Leiden (n=106) and one in The Hague (n=80). The mean age of the children was 10.3 years (sd=1.0), 44% boys and 56% girls. The other group consisted of 29 children with asthma, 20 boys and 9 girls. This group was recruited in Zeeuws-Vlaanderen, an area in the south-west of the Netherlands with mainly villages and small towns. The mean age of the children was 10.1 years (sd=1.7).


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3.3.2. Procedure A group of 47 general practitioners in the south-west of the Netherlands (called 'ZeeuwsVlaanderen') received a letter with information about the present study and a request for participation. All general practitioners were contacted by telephone. In total, 12 general practitioners agreed to participate. They were asked to select children with asthma in their practice, according to the following inclusion criteria: 1. children had to be between the ages of eight and thirteen; 2. children had to be diagnosed with asthma according to the definition of the Dutch General Practitioners Association: "The diagnosis asthma applies to children who experience one of the following symptoms: (1) periods of coughing and/or congestion of the chest, that occur at least five times a year, and, if not treated adequately, last for at least 10 days; (2) attacks of shortness of breath and predominantly expiratory wheezing; (3) shortness of breath and wheezing after physical exercise" (Dirksen, 1992; p. 55); 3. children had to use inhaled anti-inflammatory medication on a daily basis, possibly in combination with bronchodilators; 4. children had to be medically supervised by a general practitioner or a paediatrician, and have visited their doctor at least once during the last year; 5. children had to be able to read at Grade 4 level; 6. at least one of the parents had to be able to read and write Dutch. The selected families were informed about the study by means of a letter, written by the researcher and signed and mailed by the general practitioner. If they agreed to participate, the parents were asked to mail a reply-card to the researchers or to contact their general practitioner. About 90% of the families contacted agreed to participate, resulting in a sample of 29 children with asthma. An appointment for a home visit was made on a day and time appropriate for the family. Before data collection, the parents signed an informed consent form. The home visit started with small talk to make the child feel comfortable. Then, the parent was given a specific questionnaire about the child's asthma, school performance and school absence. The researcher and the child went to a separate room to complete the questionnaires in order to avoid possible interference by the parent. The children were invited to indicate which words or questions they did not understand, and to elaborate on the answers they had given. At the end of the visit the parent was asked about any difficulties answering the questions. On average, a home visit took about 2 hours. The other group of children was recruited from two primary schools. These schools were


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contacted through personal contacts. A meeting with the teachers and the principal of the school was arranged prior to data collection in order to provide information about the procedure and aim of the study. Then, a letter was sent to all parents to inform about the study and to ask permission. Parents were given two weeks to object. No families refused to participate. The children in Grades 3-6 filled in the questionnaires during school hours in the classroom. In each classroom a research assistant was present to write down the difficulties the children experienced when answering the questions. Children's and parents' confidentiality was assured by using identification numbers rather than names on all questionnaires and data forms. 3.3.3. A Revised Version of the Questionnaires In the next paragraphs it is described which problems were encountered in the pilot study, and what adaptations in the three questionnaires were made as a consequence. The 'Stress and Coping Questionnaire for Children'- Revised Version First of all, the children had some difficulty with the categories 'almost never' and 'almost always'. To them, these categories were similar to respectively 'sometimes' and 'often'. Therefore these categories were changed into 'never' and 'very often'. Thus, children could rate their answers as: never, sometimes, often, very often. Secondly, the way in which the items were presented to the child, namely in the form of statements, was changed into questions. The reason for this was that the children themselves reformulated the statements into questions, because they felt more familiar with the latter. Finally, some children thought that the same questions were repeated several times. Clearly, they did not notice the changes in situation descriptions. Therefore, a visual clue was added by introducing each new situation with a picture of a duck sitting in the classroom and thinking about the stressful situation. Another visual clue concerned the alternation of the colour of the pages every time a new situation was introduced. Revision: Stressors Children had been instructed to skip the questions on stress and coping, whenever they had not been confronted with a specific situation. This led to statistical problems as a result of missing data. Therefore, the instruction was changed. The children were asked to answer the questions hypothetically, i.e., as if it 'were to happen tomorrow'. It was found that the children had difficulties thinking about the time reference 'during the last few months'. Instead, they were better able to answer the question about frequency of occurrence when


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they were thinking about 'in the class I am in now'. Apparently, the latter time span is more concrete than the former, therefore, the time span was changed. The representativeness of the stressors in children's daily life was examined by computing the percentage of children that reported having encountered each situation at least once. Sixty-four per cent of the children30 encountered at least five school-related situations. Both asthma-related situations were encountered by 69% of the children with asthma. These percentages are high enough to suggest that most children encountered the selected school-related and asthma-related stressors in daily life. Revision: Stress On average, 78%31 of the children reported experiencing at least one of the emotions (i.e., annoyance, anger, anxiety, or sadness) when being confronted with the school-related situations. When being confronted with the asthma-related situations, 95%32 of the children with asthma experienced at least one emotion. In general, sadness and anxiety were reported less often than anger and annoyance (46% versus 89%). It was decided to keep these items in the questionnaire, though, because sadness and anxiety are conceptually different from anger. Another reason was that these emotions are expected to elicit different coping strategies. Revision: Coping strategies Considerable adaptations had to be made to questions about the coping strategies, mainly because the children did not understand them. More specifically, the younger children had a hard time understanding items referring to cognitive coping strategies, such as 'I think of a solution’. Moreover, they did not understand the compounded sentences, such as 'I think: I want to walk away', and they could not conceptualise the following items: 'I hide my feelings' and 'I show others how I feel'. Some abstract words were misunderstood. For example, the words 'someone' (in: 'I think: I am going to talk to someone about it') and 'others' (in: 'I ask others for help') were not interpreted as referring to familiar persons, such as grandparents, but to unfamiliar persons, i.e., not someone specifically. Another misunderstanding was related to the coping item 'I try to forget about it'. This item was interpreted in various ways in the different situations. With regard to the situations 'Failure' and 'Task overload' children explained this item as an approach coping strategy, for example, they tried to forget

30 The group of children from primary schools (n=186) and the group of children with asthma (n=29) were combined in these analyses, thus n=215. 31 Mean percentage of all 6situations taken together. 32 Mean percentage of both asthma-related situations.


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about the problem by working harder. In the other situations this item was regarded as an avoidant coping strategy, for example in the situation 'Being bullied', they tried to forget about the stressor by thinking of something nice. Consequently, several changes in the coping items were made. These adaptations were made to the wording of the questions as well as to the number of coping strategies. First of all, it was decided to increase the number of items that represent a particular coping strategy. In this way the items could be phrased more concretely. For example, the word 'others' in the question referring to the coping strategy 'seeking social support' was replaced with specific persons (father/mother, brother/sister, friend, and teacher). Thus, instead of one question four questions were posed. Expanding the number of items for each coping strategy would have resulted in a questionnaire which was too long. Therefore, it was decided to reduce the number of coping strategies. Five coping strategies were chosen on the basis of their special importance in child research. First of all, approach and avoidance were chosen, because these operationalisations of coping are often used in research. Moreover, seeking social support was selected for its link with social support as an external resource (see Chapter 2; Section 2.3.3. for a discussion). Finally, aggression and crying are especially important in child research, because children are more likely to act out in stressful situations than adults (Eisenberg, Fabes, & Guthrie, 1997). Examples of items referring to these five coping strategies in the situation 'being bullied by other children' are: •

Do you tell them that bullying is not fair? (Approach)

•

Do you walk away? (Avoidance)

•

Do you tell your teacher? (Seeking Social Support)

•

Do you hit or kick them? (Aggression)

•

Do you cry? (Crying)

The reader is referred to Appendix B.1 for a translation of the items that represent the coping strategies in each situation. The 'Social Support Questionnaire for Children'- Revised Version The questions regarding needed and perceived social support in each situation raised considerable problems. Whenever the children reported they did not rely on support from others in a specific situation, they were unable to answer the hypothetical question about their need for social support, i.e., to think about the question of whom they would like to tell what happened, if they had needed support. Moreover, the children were not able to answer the question about perceived support, if


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they had not sought social support in the specified situation, i.e., they were unable to think about whom could have helped them to feel any better, if they had received support from this specific person. It was decided to abandon the idea to measure social support as a situational construct. Instead, availability of social support, and the child's satisfaction with it was measured in general. As a result, a new self-report questionnaire was constructed, based on an existing self-report questionnaire of social support in children, the Survey of Children's Social Support (Dubow & Ullman, 1987) (See Chapter 2; Section 2.3.4. for an explanation of this questionnaire). Nine items were selected to include three functions of social support in childhood, namely (1) emotional support, (2) esteemenhancing support, and (3) informational support (see Dubow & Ullman, 1987). Items relating to emotional support refer to perceived support when experiencing stress. An example of such an item is 'who comforts you when you are sad?'. Items related to esteem-enhancing support, refer to remarks from others with regard to the child's qualities, for example 'who says nice things to you?'. Finally, items related to informational support, refer to assistance with regard to didactical problems: 'who helps you in case you have trouble with your school work?'. Each item consists of two parts, one part concerns the availability of significant others for a child, namely parents, siblings, friends, and teacher. The other part concerns the child's satisfaction with the provided support. These two elements, respectively quantity and quality of support, are commonly distinguished in the social support literature (e.g., Sarason, Levine, Basham, & Sarason, 1983). For each question, the child indicates whether his mother, father, brother, sister, boyfriend, girlfriend, and teacher provided the needed support. The child indicates as many persons as apply in his or her case. Then, the child rates satisfaction with the provided support of all persons together on a four-point Likert scale (1=never; 2=sometimes; 3=often; 4=very often). For a translation of the social support items, see Appendix B.2. The 'Asthma Coping Questionnaire for Children’ - Revised Version The items belonging to the three ways of coping with asthma in daily life were rigorously rephrased, mainly because the children did not understand the items. Most children had a hard time understanding items like: 'I hide my asthma in the presence of others'; 'I pretend to be more courageous than I really am', 'I am active', 'I show others I have asthma', and 'I take my medication as the doctor has told me'. Some items were reworded more concretely, some others were dropped, and some new ones were added (taken from the 'Asthma Coping Questionnaire for Adults' of Maes, Schlösser &Vromans, 1987). This resulted in a list of 21 items.


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Examples are: •

Do you take your medication with you, whenever you play with friends? (Maintaining a restrictive lifestyle)

•

Do you take your medication to school? (Maintaining a restrictive lifestyle)

•

Do you worry about your asthma? (Focusing on asthma)

•

Do you feel beforehand that you will become short of breath? (Focusing on asthma)

•

Do you sit by yourself when you have to take your medication? (Hiding asthma)

•

Are you ashamed of having asthma? (Hiding asthma)

For a translation of the items belonging to these three scales, see Appendix B.3.

3.4. Phase III: Structure and Reliability of the Questionnaires: Results of the Primary School Study The sample of the primary school study consisted of 392 children from regular schools. The aim of the primary school study was two-fold: (1) to evaluate the questionnaires on their structure and reliability in order to decide whether the revised versions were useful for research purposes, and (2) to use the sample as a comparison group when studying differences and similarities between children with and without asthma (see Chapter 4 for results). 3.4.1. Subjects Four schools participated in the primary school study. Three schools had a religious background, two were Roman Catholic (n=128 and n=100) and one was Protestant (n=114). The fourth school was a non-denominational school (n=50). In total, 392 children from grades 3 through 6 completed the questionnaires. The children had a mean age of 9.8 years (sd=1.3), 52% was male and 48% female. Twenty-six children (7%) reported having asthma. Fifty-nine per cent (n=231) of the parental questionnaires were returned. A total of thirty-one single-parent families (14%) participated in the study. The educational level of the parents33 was as follows: 34% lower educational level34, 32% middle educational level, 34% higher educational level. Dutch was the most common language in most

33

In two-parent families the parent with the highest educational level was selected. Lower educational level = elementary education (LO), junior secondary vocational education (LBO), and junior general secondary education (MAVO); Middle educational level = senior secondary vocational education (MBO) and senior general secondary education (HAVO); Higher educational level = pre-university education (VWO), higher vocational education (HBO), and university education (WO). 34


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families (95%). The data of this sample were used in the analyses to evaluate the structure and reliability of the school version of the Stress and Coping Questionnaire for Children and the Social Support Questionnaire for Children. The 26 children with asthma were not excluded for this purpose, because the questionnaires had to be suitable for all children at regular schools, and not just for a selected group of children without asthma. 3.4.2. Procedure Twenty-nine schools in the west of the Netherlands received a letter with a request for participation information about the procedure and aim of the study. Two weeks later, the principals of all schools were contacted by telephone to inquire about their willingness to participate. Four schools agreed to participate. A meeting with the teachers and the principal of the school was arranged prior to data collection in order to provide more information about the procedure and aim of the study. A letter with information about the aim and procedure of the study was sent to the parents of all children. Parents were given two weeks to object. Five families refused to participate, and the children of these families did school work during the data collection. The other children completed the questionnaires during school hours in the classroom. In each classroom the teacher was present to keep order. A research assistant read aloud the questions to the children in Grades 3 and 4, in order to control for any differences in reading comprehension as much as possible. Children's and parents' confidentiality was assured by using identification numbers rather than names on all questionnaires and data forms. The Stress and Coping Questionnaire for Children (school version) was administered twice in order to assess test-retest correlations. The time elapsed between the first and the second administration was three weeks. At Time 1 all 392 children completed the questionnaire. At Time 2 approximately half of the sample (n=185) filled in three situations, and the other half (n=195) the other three situations. A time interval of three weeks was chosen, because a shorter interval would increase carry-over effects induced by memory, and a longer interval would be vulnerable to changes in the respondents' perception (La Greca, 1990b; Spirito, Stark, & Williams, 1988). The procedure of the second measurement was similar to that of the first measurement. The parental questionnaires were sent to the families six months after their child had filled in the questionnaires. At the end of the school year the teacher was requested to provide the following information about each child: (1) absence rate, (2) grades for reading and mathematics, and (3) wellbeing at school.


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3.4.3. Statistical Analysis The structure of the coping items of the 'Stress and Coping Questionnaire for Children' was examined by means of a confirmatory factor analysis (CFA). CFA is most appropriate when a factorial model is based on theory and empirical research (Byrne, 1998, p. 136), as was the case for the proposed coping structure. The ultimate goal was to decide whether the structure of the hypothesised coping scales could be identified in the answer patterns of the children. Reliability of the coping scales was determined by means of computing indices of internal consistency, the Cronbach Alpha Coefficient (Nunnally, 1978, p. 245). The structure of the stress items was examined by means of intercorrelations. Stability of the stress and coping items was evaluated by means of computing Pearson correlations between the first and second administration. The structure of the social support items of the 'Social Support Questionnaire for Children' was examined by means of a special type of principal component analysis (PRINCALS), which is specifically designed to deal simultaneously with variables of different measurement levels, especially nominally measured and ordinal variables. In this case, CFA was less appropriate, because this questionnaire was in the initial stages of development. Moreover, we wanted to examine the structure of the social support items and the providers of support simultaneously. PRINCALS is a more designated technique to this purpose than LISREL. Reliability of the constructed support scales was determined by computing Cronbach's Alpha. 3.4.4. Structure and Reliability of the Questionnaires 'Stress and Coping Questionnaire for Children' (School Version) Structure of the Coping Items: A Confirmatory Factor Analysis A confirmatory factor analysis was performed on the coping items by means of a linear structural equation model (SEM). One of the best-known models and computer programs to estimate structural equation models is LISREL, of which version 8 was used (Jöreskog & Sörbom, 1993). Generally speaking, a confirmatory factor analysis tests the hypothesis that the assumed underlying factors (or latent variables) linearly predict the observed variables to an adequate degree. The agreement between the original data and the data estimated by the factor model is assessed by comparing the observed covariances with estimated covariances derived from the model. Thus, the question is whether the hypothesised latent variables or factors adequately predict the observed variables or rather their correlations (Bollen, 1989). Thus, for the present study, the question was whether the five coping


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strategies with respect to each stressor can adequately predict the correlations between the formulated coping items. There are many different ways of measuring the overall degree of correspondence between the predicted and observed covariance matrices in a structural equation analysis. The traditional measure of model fit is the chi-square fit index. The chi-square statistic tests the null hypothesis that there is perfect model fit in the population. Thus, if the chi-square is statistically significant, the difference between the predicted and perfect model is large. If the chi-square is nonsignificant, the predicted model resembles the perfect model. The chi-square test statistic has been criticised for its dependence on sample size, such that model evaluations with large sample sizes almost always lead to model rejection. Therefore, other fit indices should be taken into account as well when evaluating the fit of a model. Based on reviews of studies on fit indices, Jaccard and Wan (1996) proposed three classes of indices of model fit in structural equation models (p. 86). They suggested that fit indices from all three classes are needed to evaluate the model properly. Confidence in a model is increased when the fit indices are high across all three classes. For the present study, three fit indices were chosen, each belonging to a different class: (1) the standardised root mean square residual (standardised RMR), (2) the root mean square error of approximation (RMSEA), and (3) the comparative fit index (CFI). The standardised root mean square residual (RMR) belongs to the first class of fit indices, based on absolute model fit by comparing predicted versus observed variances and covariances. The RMR index is an average discrepancy between predicted and observed correlations. A general rule of thumb is that a model that yields a RMR lower than .05 indicates good fit (p. 88). The root mean square error of approximation (RMSEA) belongs to the second class of fit indices, which takes into account the parsimony of the model when evaluating absolute model fit. A rule of thumb is that RMSEA values of less than .08 imply adequate model fit. The comparative fit index (CFI) is an example of the third class of fit indices, which compares the absolute model fit to an alternative model, the "null" model. The "null" model assumes that the simplest theoretically acceptable model is true, e.g., an zero-factor model. A CFI value higher than 0.90 yields a good model. The hypothesised model was tested by performing three analyses, one with respect to each stressor, i.e., 'Problems with school work', 'Rejection by peers', and 'Authority conflict'. The solution for the stressor 'Authority conflict' was found to be non-admissable, which indicates that given the model no adequate estimates for its parameters could be found. In addition, the fit measures of the solutions of the other stressors were not acceptable (see Table F.1, Appendix F). Inspection of the standardised residuals showed that the highest residuals were due to items that were similarly formulated in each situation


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description belonging to the same stressor. For example, the question 'Do you try to forget about it?' appears twice with regard to the stressor 'Rejection by peers', namely once in the situation description 'being bullied by other children' and once in 'not being allowed to join'. Thus, it is not unreasonable that the measurement errors of these similarly formulated items may be correlated. It has been suggested, for example by Bollen (1989, p. 235) to correlating the errors of pairs of items, which leads to a less restricted model. For the sake of consistency and to avoid arbitrariness, the errors of all pairs of items in all domains were allowed to correlate, and not just the errors with the highest residuals. This less restricted model was tested with regard to all three stressors by subjecting it again to a structural equation analysis using LISREL. The fit measures are presented in Table F.2 (Appendix F). The fit measures of the less restricted model were compared to those of the original model. All fit measures improved in the desired direction: the χ2, RMSEA, and RMR decreased, and CFI increased. Moreover, the fit measures were evaluated against the guidelines indicating a 'good fit', given by Jaccard and Wan (1996, p. 88): RMR < 0.05, RMSEA < 0.08, and CFI > 0.90. The solutions with regard to the stressor 'Problems with school work' and 'Rejection by peers' were more or less acceptable; two fit measures (RMR and RMSEA) were satisfactory, the other (CFI) was less satisfactory. The solution with regard to the stressor 'Authority conflict' was less acceptable, which was mainly due to a low CFI. In order to decide whether the solutions were realistic, the correlations between the factors were inspected. It appeared that the intercorrelations in 'Problems with school work', and 'Rejection by peers' were not higher than .63, indicating realistic solutions. However, the intercorrelations with regard to the stressor 'Authority conflict' were too high (three out of four were higher than .85) to accept the solution. Clearly, the five factors could not be differentiated from one another. In Appendix G the intercorrelations of the factors, as well as the factor loadings of the items are presented. An explanation for the lower fit measures of 'Authority conflict' could be that it was operationalised by one situation at home and one in the classroom. It was hypothesised that the coping strategies used by the children differ in response to the different locations. This hypothesis was tested by performing another LISREL on each situation separately. No solution could be found in the situation 'Conflict with teacher', while the other situation 'Conflict with parents' yielded an unacceptable solution, due to high intercorrelations between the factors (>.85). As a result of an unacceptable model of fit, it was decided to drop the stressor 'Authority conflict' from further analyses. In conclusion, when measurement errors were allowed to correlate, the hypothesised model was acceptable with regard to the stressors 'Problems with school work' and 'Rejection by peers'. In other words, the coping items were good indicators for the underlying factors that were theoretically derived.


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This conclusion is based on acceptable fit measures, and on intercorrelations between factors that were not too high. 'Stress and Coping Questionnaire for Children' (School Version) Reliability of the Coping Factors: Internal Consistency The interrelatedness of the coping items loading on the same factor was evaluated by means of computing Cronbach's Alpha Coefficients. Items were removed that lowered the Cronbach's Alpha. On the basis of this criterion two items were removed, namely 'ask for less work', and 'continue working', both from the situation descriptions belonging to the stressor 'Problems with school work'. The final Cronbach's Alpha Coefficients are presented in Appendix H (Table H.1). As can be seen in the table the Cronbach's Alphas ranged from .65 to .78, which is acceptable. Thus, it can be concluded that five internally homogeneous coping scales were constructed with regard to the stressor 'Problems with school work' and 'Rejection by peers'. Reliability of the Coping Factors: Test-Retest Correlations The school version of the Stress and Coping Questionnaire for Children was administered twice in order to assess test-retest correlations. The table in Appendix I (Table I.1) reflects the Pearson correlations between Time 1 and Time 2 of the five coping scales in each situation. Correlations ranged from .41 to .76, with a mean correlation of .59, reflecting moderate stability. Descriptives and Interdependence of the Coping Scales The results of the confirmatory factor analysis and the reliability tests permitted the construction of five coping scales. A score on each scale was computed by adding the scores on the items and dividing it by the number of items enclosed in that scale. For those respondents without a sibling, the combined score on the scale 'seeking social support' was divided by three instead of four. The table in Appendix J (Table J.1) gives an overview of the descriptives of each scale, i.e., mean, standard deviation, kurtosis, and skewness. As can be seen, the kurtosis of the coping scale 'crying' was high in both stressors. This means that the distribution of the data was peaked, thereby violating one of the assumptions of normal distribution (Tabachnick & Fidell, 1989, p. 72). Although it has been suggested transforming the scale by means of applying a logarithm (Tabachnick & Fidell, 1989, p. 85), it was decided not to transform the scales with high kurtosis for two reasons. First, when the scales with high kurtosis are transformed, whilst the other scales of the same questionnaire remain


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untransformed, difficulties arise with interpretation. For instance, transformed scales of crying could not be compared to untransformed scales of seeking social support. Secondly, scales with a small number of categories, as is the case with the coping scales, are in general not much affected by a logarithmic transformation. In particular, log-transformed scales have largely the same correlations as the untransformed scales. The latter assumption was tested by computing correlations between the crying scales and the other scales, and comparing the correlations based on transformed and untransformed crying scales. It turned out that the correlations did not differ more than .03, which is small. Therefore, it was decided not to transform the crying scales for ease of interpretation. It was decided to give the coping strategies the same name in all stressors, despite the result that intercorrelations between coping strategies differed across different stressors (see Appendix K, Table K.1). The reason for this was that underlying actions are similar. For example, approaching a difficult task at school differs in content from approaching other children when being bullied. However, the underlying action is the same (i.e., directed towards the stressful situation). It should be kept in mind that a coping strategy cannot be described without reference to the stressor. 'Stress and Coping Questionnaire for Children' (School Version) Structure of the Stress Items: Intercorrelations With regard to the stress items (annoyance, anger, anxiety, sadness), it was decided to take similar decisions as those that had been made with regard to the coping scales. The reason was that stress and coping in this study were examined with reference to the various stressors. Thus, the stress items of the stressor 'Authority conflict' were also excluded from further analyses. The structure of the stress items was examined by means of their intercorrelations within each stressor. Should high correlations be observed (higher than .70) then the stress items are grouped. In this case, the separate stress items would not discriminate enough to be taken as separate items. In Appendix L (Table L.1) the intercorrelations between the stress items are shown. As can be seen, the correlations vary between .15 and .63. These correlations are too low to combine the stress items. It was therefore decided to keep the stress items separate, thus, as four emotions. 'Stress and Coping Questionnaire for Children' (School Version) Reliability of the Stress Items: Test-Retest Correlations Reliability of the stress items was examined by computing Pearson correlations between Time 1


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and Time 2 of the four stress items within the four stressful situation descriptions. The table in Appendix I (Table I.2) reflects the test-retest correlations. As can be seen in this table correlations range from .35 to .67, with a mean correlation of .54, reflecting moderate stability. Descriptives of the Stress Items Table M.1 (Appendix M) provides an overview of the descriptives of each stress item, i.e., mean, standard deviation, kurtosis, and skewness. The kurtosis of anxiety was high, as well as that of sadness in 'Problems with school work'. It was decided not to transform the items with high kurtosis for the same reasons as discussed before. 'Social Support Questionnaire for Children': Structure and Reliability Structure of the Social Support Items: PRINCALS The 'Social Support Questionnaire for Children' consisted of nine questions about social support, which were completed with respect to seven persons (see Appendix B.2). Thus, the original set of variables consisted of 63 (9 x 7) social support items. A principal component analysis for variables with different measurement levels (PRINCALS; Gifi, 1990) was performed (SPSS Categories, 1998, p. 83ff). For each subject (n=392) 63 observations (9 x 7) with regard to social support were collected, i.e., 392 children reported on 9 social support questions with respect to seven persons. In order to be able to depict the seven providers of social support in the space of the children, the data matrix was rearranged. The original array contained 392 submatrices (1 submatrix per subject), each consisting of nine social support questions in the rows and seven providers in the columns. This array was transformed into a matrix per provider consisting of the 392 subjects in the rows and the nine questions in the columns. In addition, a variable called 'provider' was added in order to be able to obtain a score35 for each provider on the two dimensions. 'Provider' was treated as a nominal variable with seven categories, while the questions were treated as ordinal. In this way, it was possible to depict the position of each provider in the object space of social support questions, based on the optimal relationship between subjects and social support questions. When determining the number of dimensions the eigenvalue (or proportion of explained variance) for each dimension should be larger than: 1/number of variables (SPSS, 1988). In this case, it implies that each dimension should have an eigenvalue of at least 1/9 = .11. A PRINCALS with a two35

In PRINCALS referred to as 'component loadings', these are correlations between the transformed variables and the principal components. This program is now known as CatPCA.


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dimension solution yielded to an eigenvalue of .57 for the first dimension and of .12 for the second dimension. The reliability coefficient36 of the first dimension was .74, which is acceptable (Lord, 1958, cf. Nishisato, p. 101) In Appendix N (Table N.1) the component loadings of the nine questions as well as of the seven providers are given. The graphical display of the component loadings is shown in Figure 3.1.

In this figure, the social support questions are depicted as vectors. Numbers in brackets refer to

the following items: Who comforts you when you’re sad? Who helps you when you are scared? Who wants to talk to you when you worry about something Who encourages you when you have a hard time doing something? Who says kind things about you? Who makes you laugh when you are angry? Who says you are a nice person? Who helps you when you don’t understand something? Who helps you when you have trouble with your school work? All these questions had a positive correlation with the first component (see Table N.1). This implies that there was a general factor that correlated in the same direction with all variables. This principal component could be labelled as quantity of perceived social support. The second principal component distinguished between two sets of social support questions, i.e., questions 8 and 9 versus questions 1-3 and 5-7. Question 4 did not belong to a particular set, as is shown by its low loading on the second component. Moreover, in Figure 3.1, question 4 is spatially located between these two sets, which indicates that it could not be incorporated in one of the categories. The two sets were labelled as informational support and emotional support, respectively. The distribution of the seven providers of social support was examined in the object space, in order to see which providers group together, and, consequently, reduce the number of variables. Figure 3.1 shows that three groups could be identified: (1) mother and father, (2) boy friend, girlfriend, brother, and sister, and (3) teacher. Consequently, it was decided to separate these three groups in further analyses.

36

α = 1−

items.

 1 − η2   ( n − 1)η 2 

in which η refers to the eigenvalue of the first dimension, and n refers to the number of


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0.5 Dimension 2 sister brother

(7)

0.25

0 -0.6

(1) father (2) (3)

girlfriend

boyfriend -0.4

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mother

(6) (5)

Dimension 1

0 0

0.2

0.4

0.6

0.8

1

(4) -0.25

-0.5 (8) (9) -0.75

-1

-1.25 teacher -1.5

Figure 3.1

Plot Component Loadings of Social Support Items and Providers

In conclusion, the original set of 63 variables was reduced to a set of 6 variables. On the basis of the results of the PRINCALS, it was decided to group six questions together as emotional support, and to cluster two questions referring to informational support. For each subject, a mean score was computed on the emotional support scale with regard to the three groups of providers (i.e., parents, peers, teacher), and on the informational support scale, also with respect to the three groups of providers. The items on quality of social support were grouped accordingly; questions 1-3 and 5-7 on 'quality of emotional support', and questions 8 and 9 on 'quality of informational support'. Thus, for each child a

1.2


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total of 8 scores on social support were used in further analyses. 'Social Support Questionnaire for Children' Reliability of the Social Support Scales: Internal Consistency Cronbach's Alpha Coefficients were computed on the six scales representing the quantity of social support from parents, peers, and teacher. In Appendix H (Table H.3) it is shown that these were all above 0.69, except for the scale 'informational support from peers'. Consequently, this scale was omitted from further analyses. Reliability of the two scales representing quality of social support was also assessed by computing Cronbach’s Alpha Coefficients. As can be seen in Table H.4 (Appendix H), these are 0.82 and 0.77, respectively, indicating good internal consistency of the scales. Descriptives and Interdependence of Social Support Scales The results of the PRINCALS and Cronbach's Alphas allowed the construction of seven scales: two scales of quantity of social support for parents and teacher, one scale for peers, and two scales of quality of social support. These scales were formed by adding the scores on the items and dividing it by the number of items enclosed in the scale. In Appendix O (Table O.1) the mean, standard deviation, kurtosis, and skewness of each scale is given. Most emotional support was provided by parents, and most informational support from the teacher. This is in line with the social support literature (Cauce et al., 1990). The intercorrelations of the various scales are given in Table P.1 (Appendix P). The highest correlations are between quality of emotional and informational support (.68), quantity of emotional and informational support from parents (.59), quantity of emotional and informational support from the teacher (.33) and quantity of emotional support from peers and teacher (.33).

3.5. Phase IV: A Cross-Validation on the Asthma Sample: Results of the Main Study The sample of the main study consisted of 119 children with asthma. The aim of the main study was threefold: (1) to evaluate whether the results with regard to the structure and reliability of the constructed questionnaires, obtained on the basis of the primary school sample, could be cross-validated on the asthma sample, (2) to evaluate the structure and reliability of the asthma-specific questionnaires, thus on the asthma version of the 'Stress and Coping Questionnaire for Children' and the 'Asthma Coping for Children', and (3) to answer the two main research questions of our study. The first two objectives are addressed in this chapter, the third objective is the focus of Chapter 4 and 5.


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3.5.1. Subjects An asthma group of 119 children participated in the main study, consisting of 63 boys (53%) and 56 (47%) girls. The mean age of the children was 10.2 years (sd=1.7), ranging from 8 through 14 years. Most children attended primary schools; 96 children (81%) were in grades 2 through 6, the rest of the children attended secondary school. The mean age at which asthma was diagnosed was four and a half years (sd=2.7). The majority of the children used asthma medication (n=100), eight children did not use medication regularly, and for 11 children data on medication were missing. A detailed description of the disease characteristics of the asthma group, such as symptoms, allergens, and visits to the doctor, is given in Appendix E. The educational level of the parents37, of which 8% (n=9) were single, was as follows: 34% lower educational level38, 22% middle educational level, 44% higher educational level. Dutch was the most common language in most families (97.3%). 3.5.2. Procedure Children with asthma were recruited via general practitioners. A group of 120 general practitioners in the west of the Netherlands was asked to participate by means of a letter. This letter was sent in collaboration with the Department of General Practice Medicine, Leiden University. In total, 25 general practitioners and one asthma nurse agreed to participate in the study. They selected children with asthma in their practice, according to the same criteria as outlined in Section 3.3.2. The selected families were informed about the study by means of a letter, written by the researcher and mailed by the general practitioner. This was done to assure the families' confidentiality. If they agreed to participate, the parents were requested to mail a reply card to the researchers. About two-thirds of the families contacted agreed to participate. This method of recruitment yielded a sample with 95 families. In addition, an advertisement was published in a Dutch magazine, called Contrastma, which is available to members of the 'Netherlands Asthma Foundation'. An additional number of approximately 30 families contacted the researchers by phone. During this telephone conversation the above mentioned criteria were checked, which led to the inclusion of a further 24 families. A meeting for the children was organised in each city or village where the families lived. During this meeting the children were invited to complete three questionnaires, namely the 'Stress and Coping Questionnaire for Children' (school version and asthma version), the 'Asthma Coping 37

In two-parent families the parent with the highest educational level was selected. Lower educational level = elementary education (LO), junior secondary vocational education (LBO), and junior general secondary education (MAVO); Middle educational level = senior secondary vocational education (MBO) and senior general secondary education (HAVO); Higher educational level = pre-university education (VWO), higher vocational education (HBO), and university education (WO). 38


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Questionnaire for Children', and the 'Social Support Questionnaire for Children'. The atmosphere during the meetings was low-key, in order to make the children feel comfortable enough to ask questions and to elaborate on the answers they completed. This meeting took place during out-of-school hours. A research assistant read aloud the questions to the children in Grades 3 and 4, in order to control for any differences in reading comprehension as much as possible. In some cases it was not possible for children to come to such meetings, mainly because of practical reasons. In such cases, an appointment was made for a home visit. During the home visits the researcher and child went to a separate room in order to avoid possible interference by the parent. Before data collection the parents filled out an informed consent form. Children's and parents' confidentiality was assured by using identification numbers rather than names on all questionnaires and data forms. 3.5.3. Statistical Analysis The results on structure and reliability of the school version of the 'Stress and Coping Questionnaire for Children', obtained on the basis of the primary school sample (see Section 3.4.4), were crossvalidated on the basis of the asthma sample. The same statistical analyses were used as were applied with the primary school sample. The structure of the coping items of was assessed by means of a confirmatory factor analysis. Reliability of the coping scales and of the social support scales was determined by means of computing indices of internal consistency (Cronbach's Alpha Coefficient) Structure and reliability of the asthma version was also evaluated by means of these statistical analyses. 3.5.4. A Cross-Validation of the Questionnaires 'Stress and Coping Questionnaire for Children' (School Version): A Cross-Validation' The question was whether the formulated coping items adequately represent the five coping strategies with regard to each stressor. A confirmatory factor analysis (LISREL) with correlated measurement errors was conducted on the coping items of three stressors, 'Problems with school work', 'Rejection by peers', and 'Shortness of breath'39. The fit measures were somewhat lower than those in the Primary School Study (see Appendix F, Table F.3). Table G.3 (Appendix G) presents the factor loadings as well as the correlations between the factors of 'Shortness of breath'. Inspection of the intercorrelations between the five factors of the three stressors showed that these were not higher than .69, indicating a 39

The stressor 'Authority conflict' was not considered due to methodological problems, as described in Section 3.4.4.


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realistic solution. On the basis of these findings it can be concluded that the model remains tenable, despite its lower fit measures in the asthma sample. The lower fit measures could be due to the smaller sample size of the asthma group. Internal consistency of the coping items loading on the same factor was evaluated by means of computing Cronbach's Alpha Coefficients. Two items were removed that lowered the Cronbach's Alpha, 'ask for less work', and 'continue working' (Problems with school work). These items were also removed in the Primary School Study. In addition, two items were removed from the asthma version, 'continue playing' (home), and 'take medication', (classroom). The final Cronbach's Alphas ranged between .62 and .80, which is acceptable (see Appendix H, Table H.2). Table J.2 provides an overview of the descriptives of each coping scale. Despite the high kurtosis of the coping scales 'crying' and 'aggression' (Shortness of breath), it was decided not to transform the scales for the same reasons as discussed earlier. The means of the coping scales in the asthma sample were similar to those in the primary school sample (Table J.1). Moreover, the intercorrelations between the coping scales (Table K.2.) and between the stress items (Table L.2) were also similar in both groups.40 It is concluded that the robustness of the 'Stress and Coping Questionnaire for Children' was supported on the basis of the sample of children with asthma. Firstly, because the structure and reliability of the school version of the Stress and Coping Questionnaire for Children were comparable for the two samples under study, namely children from primary schools and children with asthma. Secondly, the five hypothesised coping factors could also be confirmed with regard to the asthma version. 'Social Support Questionnaire for Children': Reliability Cronbach's Alpha Coefficients were computed on the six scales representing the quantity of social support from parents, peers, and teacher, as well as on the two scales representing quality of social support (See Tables H.4 and H.6). It was shown that these were all acceptable (Alphas above .67), except for the scale 'informational support from peers' (Alpha= .60), which was also the case in the primary school sample. The intercorrelations of the social support scales are given in Table P.2. A comparison with the intercorrelations obtained in the primary school group (Table P.1) demonstrates that the intercorrelations between the social support scales were somewhat higher in the asthma group. 40

Except for the correlations between Approach and Avoidance (Problems with school work) and Crying and Seeking Support (Rejection by peers), which were .-.32 respectively .40 in the Asthma Sample and -.17 respectively .20 in the Primary School Sample.


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3.5.5. Structure and Reliability of the 'Asthma Coping Questionnaire for Children' Although the construction of the 'Asthma Coping Questionnaire for Children' was based on the 'Asthma Coping Questionnaire for Adults' (Maes, Schlösser and Vromans, 1987), the questionnaire was thoroughly revised on the basis of the results of the pilot study. Therefore, it can be assumed that the factor structure of the coping items taken from the original questionnaire would not necessarily apply to the one constructed for children. Therefore, instead of a confirmatory factor analysis, an exploratory factor analysis was performed on 19 out of 21 coping items. Two items were removed beforehand, namely 'do you eat healthy food?' and 'do you go to bed on time?' During data collection the children frequently remarked that 'they did not want to eat healthy food nor go to bed on time', but their parents forced them to. Thus, eating healthy foods and going to bed on time is imposed by parents rather than initiated by the children themselves. Thus, inclusion of these two items would violate the validity of the questionnaire, which intends to measure the child's coping with asthma in daily life. A Principal Component Analysis (PCA) with oblique rotation was performed. One-, two-, three, and four component solutions were compared with one another. The three-component solution was chosen, because it could be interpreted best. These three components explained 39.5% of the variance (see Appendix Q, Table Q.1). The first component consisted of items such as 'I pay attention to symptoms of shortness of breath', and 'If there is something that might make me short of breath, I do something about it'. These items indicate the child's awareness of symptoms of asthma and willingness to manage the asthma. This component was labelled as 'Asthma Control'. The second factor contained items referring to Avoidant coping, such as 'I forget to take my medication'. The third component was characterised by worrying about asthma and taking it easy in order to avoid any symptoms of asthma. This component was labelled as 'Danger Control'. Internal consistency was determined by means of computing Cronbach's Alpha Coefficients of the three components (see Table Q.1). Items that lowered the Alpha of a component were removed (four in total). The Cronbach's Alphas of Asthma Control and Danger Control of was .71, which is acceptable. The internal consistency of Avoidance was insufficient, (Alpha =.53). Therefore, it was decided not to use this component in further analyses. The two scales 'Asthma Control’ and 'Danger Control' were constructed by adding the scores on the items and dividing it by the number of items enclosed in that scale. Table R.1 (Appendix R) gives an overview of the descriptives of each scale, i.e., mean, standard deviation, kurtosis, and skewness. The minimum score was 1, the maximum was 4. The correlation between the two scales was .52.


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3.6. Conclusion and Discussion In this chapter, four phases were presented in which the three questionnaires were constructed and evaluated for this study. (1) The Stress and Coping Questionnaire for Children (school and asthma version) (Boekaerts & Röder, 1995); (2) The Social Support Questionnaire for Children (Boekaerts & Röder, 1995); (3) The Asthma Coping Questionnaire for Children (Boekaerts & Röder, 1995). The first version was evaluated on comprehensiveness in a pilot study conducted in the summer of 1993. Several adaptations were made with regard to the wording of the items, especially of the coping items. Moreover, it was decided not to measure children's perceived social support as a situation-specific construct, because of the difficulties children had in answering questions hypothetically. Therefore, a separate questionnaire on perceived social support in general was constructed. The questionnaires were evaluated with respect to their structure and reliability for a population sample of 392 children from primary schools (Phase III) as well as for a sample of 119 children with asthma (Phase IV). The sample of 392 primary school children included 26 children with asthma (7%). This sample was representative of the Dutch school population, firstly because only five parents refused to participate, and secondly because the percentage of children with asthma (7%) in this sample was comparable to percentages reported in Dutch epidemiological studies (see Chapter 1, Section 1.3.1). The sample of children with asthma was recruited via General Practitioners, thereby ensuring variability of symptoms of asthma. However, all children in the sample lived normal lives in that they went to regular schools, and were not inpatients of a special asthma clinic. Thus, the sample of children with asthma predominantly consisted of children with less severe asthma. About one fifth of the asthma sample was recruited by means of an advertisement in a magazine Contrastma, which is available to members of the ‘Dutch Asthma Foundation’. One disadvantage of this method of recruitment was that no general practitioner was involved, thus the diagnosis ‘asthma’ was confirmed by the parents instead of the general practitioner. This subgroup of children might be biased, because their parents’ membership of the ‘Dutch Asthma Foundation’ could be due to having more interest in asthma or to experiencing more problems with their child’s asthma. It could be assumed that all parents of the sampled group of children were more interested in asthma, because participation was on a voluntary basis. Thus, the group of children sampled might not have been a representative cross-section of the Dutch population of children with asthma. With regard to the Stress and Coping Questionnaire for Children (school and asthma version) two conclusions could be drawn. First, the intercorrelations between the four emotional responses representing stress were too low to combine to one overall measure of stress. Secondly, the structure of


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the coping items was evaluated by means of a confirmatory factor analysis. Five internally consistent coping scales could be constructed with regard to two school-related stressors and one asthma-related stressor: (1) Approach, (2) Avoidance, (3) Seeking social support, (4) Aggression, and (5) Crying, with regard to (I) Problems with school work, (II) Rejection by peers, and (III) Shortness of breath. With regard to the Social Support Questionnaire for Children seven internally consistent social support scales could be constructed, five on quantity of social support (emotional support of parents, peers and teacher, and informational support of parents and teacher) and two on quality of social support (emotional and informational support). Finally, two internally consistent scales of coping with asthma in daily life were extracted from the Asthma Coping Questionnaire for Children, namely 'Asthma Control' and 'Danger Control'. These two scales contained 11 items in total, thus 10 items could not be used. Despite its reliability, it should be kept in mind that these two coping scales may not represent the concept that was intended to be measured, namely coping with asthma in daily life. It could be concluded that both the content and the structure of the Asthma Coping Questionnaire for Children differed substantially from the adult version on which it was based. This implies that the operationalisation of a theoretical concept should be based on separate adult and child samples. As a consequence, adaptations of adult questionnaires for children are best avoided. Differences in intercorrelations between the coping scales were observed across the various stressors. This observation implies the significance of coping strategies differs with regard to the situation in which they are applied. For example, approaching a difficult task at school is significantly different to approaching other children when being bullied. Nevertheless, it was decided to give the coping strategies the same name across the different stressors, because the underlying action is the same. For example, approaching is always directed towards the stressor, whether it is a difficult task at school or a group of bullies. Given the differences in significance it is recommended always using coping strategies with reference to the specific stressor. The test-retest correlation between the coping scales was .59 on the average, with a time interval of four weeks. Spirito, Stark, and Williams (1988) reported a mean of .30 (range .04 and .59) when they administered their situation-specific coping instrument, the Kidcope41 two weeks later. The authors indicated that the low magnitude of the correlations was due to the measurement of coping as a situation-specific construct. Folkman and Lazarus (1985) argued that it is difficult to apply test-retest reliability to a situation-specific coping measure, because it is hard to distinguish between low 41

See Chapter 2, Table 2.2. for a description of this instrument.


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correlation due to low reliability or low correlation due variability which is inherent to situation-specific measures. When constructing the Stress and Coping Questionnaire for Children it was decided to use standard stressors instead of personal stressors. One advantage is that children could be compared on the same stressors. A disadvantage is that not all children encounter each stressful situation that is presented to them. As a consequence, some children estimated their stress and coping strategies for hypothetical situations. It could be assumed that such answers lead to a reduction in reliability. This assumption was tested by comparing Cronbach's Alpha Coefficients of the coping scales with and without the exclusion of responses to hypothetical situations. The differences in Alphas were marginal (i.e., not larger than .04) both on the basis of the primary school sample and the asthma sample. This outcome indicates that answers given to hypothetical situations did not distort the reliability of the data. It has been concluded in the literature that children do not only apply different coping strategies across a variety of stressors, but they also use several coping strategies in response to the same stressor (Boekaerts & Röder, 1999). These two conclusions were supported in this chapter. First of all, the differences in means of coping strategies across stressors showed that different coping strategies in response to various stressors were applied. In other words, children adjust their way of coping to the characteristics of the stressor. Secondly, low correlations were found between some coping strategies applied to the same stressor, which indicates that children have a large repertoire of coping strategies to be used in response to a certain stressor. The school version of the Stress and Coping Questionnaire for Children (Boekaerts & Röder, 1995) and the Social Support Questionnaire for Children (Boekaerts & Röder, 1995) were used to answer the second research question, on differences in experienced stress, coping, and social support between children with and without asthma. The results are presented and discussed in Chapter 4. All three questionnaires were used to answer the third research question, on individual differences between children with asthma. The results are presented and discussed in Chapter 5.

Difference and similarities with non-asthmatic children

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Chapter 4 A Characterisation of Children with Asthma: Differences and Similarities with Non-asthmatic Children 4.1. Introduction Does the ‘typical asthma child’ exist? Do children with asthma typically experience more stress in daily life than their peers, who do not face an ever-present stressor such as asthma? Do they cope differently with stress, because they have more experience with stress? Do they need more support from their parents, in order to be able to cope with the stress? Do they feel happy at school, despite being absent so often? These and other questions are addressed in this chapter. It describes how asthma affects the children’s emotional life, such as their experience of school-related stress, how they cope with stress, and how much emotional support they need. Furthermore, it describes how asthma affects their psychosocial functioning in the long run, such as behaviour problems and school performance. This was done by studying differences and similarities with non-asthmatic children. Having asthma entails a large number of stressors, both for the child and the parents. In Chapter 1 the physical consequences of childhood asthma were discussed with regard to its psychological consequences for the child. It was argued that the irregularity of asthma symptoms leads to uncertainty and unpredictability, which are considered to enhance stress and lead to feelings of helplessness (Chaney, Mullins, Urtesky et al., 1999; Creer and Bender, 1995; Lazarus & Folkman, 1984, p. 85; Rolland, 1984; Van Dongen-Melman & Sanders-Woudstra, 1986). The management of asthma places an additional strain on the child and family as a result of prescriptions, restrictions, and visits to physicians. As a result of episodes of exacerbations, children with asthma miss school more frequently than their classmates. It is assumed that restrictions in play and sports activities and a high school absence rate place children at risk for developing psychosocial problems, such as low school performance and feeling socially isolated (Eiser, 1990; La Greca, 1990a). Comprehensive research in child health has been carried out into the effects of asthma on the child's psychosocial functioning in daily life (e.g., Eiser, 1990; Patterson & Blum, 1996; Perrin & MacLean, 1988). Within this line of research it is assumed that a stressor exerts direct effects on a person's functioning (Boekaerts & Röder, 1999). On the basis of studies reviewed on psychosocial


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functioning42 of children with asthma (see Chapter 1; Section 1.4.2), it could be concluded that they function equally well as healthy children in many respects. Children themselves did not experience many problems; they did not have a lower self-esteem, they did not feel depressed, and they did not feel hampered in their friendships. Moreover, their school performance based on objective measures was as good as that of healthy children. The only problems reported in the literature refer to internalising behaviour problems, according to the parents. While this conclusion is based on studies that used parental or child reports, it would be interesting to see whether this conclusion is still valid when both parental and child ratings were included in one single study, as was the case in the present study. The first research question was 'Do children with asthma show more psychosocial problems than their peers?' Psychosocial functioning was operationalised in this study as the child’s well-being at school, behaviour and emotional problems, school performance, and school absence rate. School absenteeism is viewed as an outcome with various determinants (Lako, 1983). Whether an ill child stays home from school also depends on the child’s attitude towards school and the parents’ attitude towards staying home from school. In general, high absence rates of children were related to low parental education, low grades, the presence of behavioural problems, and overprotective parents. (cf. Kaptein-Hollmann & Stoel-Copper, 1986). School is one of the main areas in a child’s life that provides opportunities for peer interactions, besides providing a place for the acquisition of academic skills (Weitzman, 1984). Important developmental tasks of children at the primary school age are acquiring academic skills, relating to peers, and gaining independence (Havighurst, 1972). Various researchers have suggested that children with asthma experience much stress at school, because of their higher rates of school absenteeism (Bender, 1995; Celano & Geller, 1993; Gizynski & Shapiro, 1990). It can be inferred that children with asthma experience more problems with schoolwork and work overload, because they have to catch up with school work every time they return after a long absence from school. In addition, it has been suggested that chronically ill children are more prone to being rejected by peers, because they stand out due to their disease (Pless & Pinkerton, 1975; Ross & Ross, 1984). Social isolation may also occur as a result of physical limitations, such as not being able to participate in some sports (Colland, 1988; Van Veldhoven, 1998). A study among 365 mothers of chronically ill children43 showed that 35% believed that their child was subject to discrimination, of which 55% was related to school, and 36% to peers 42

In accordance with Thompson and Gustafson (1996), psychosocial functioning encompasses three dimensions: psychological functioning, social functioning, and school performance. 43 28% of the mothers had a child with asthma.


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(Turner-Henson, Holaday, Corser et al., 1994). Consequently, the most invasive stressors at this age may be problems with schoolwork and social isolation by peers. The hypothesis that children with asthma are more frequently confronted with these stressors than their peers has never been tested by research studies. Various researchers have hypothesised that the coping strategies of children with asthma may be altered as a result of the fact that their daily experiences differ from those of children without asthma (Eiser, 1990; Olson, Johansen, Powers, Pope & Klein, 1993; Phipps, Fairclough, & Mulhern, 1995). Differences in coping strategies between asthmatic and healthy children have so far not been the object of empirical studies. However, a few studies have been conducted among children with other chronic diseases, such as diabetes and arthritis. Some studies (Ebata & Moos, 1991; Olson, Johansen, Powers, Pope & Klein, 1993; Reid, Dubow, & Carey, 1995) revealed similarities in the use of coping strategies when compared with healthy controls in response to stressors such as a peer conflict, giving an oral report and getting a dental injection. However, some differences have also been reported. Olson et al. (1993) found that, when blood was taken, chronically ill children used more cognitive coping strategies, such as positive self-talk or attention diversion than children without a chronic disease. Spirito, Stark, and Tyc (1994) reported that chronically ill children used avoidance strategies less often (such as distraction and wishful thinking), in response to a hospital-related stressor. The researchers of both studies attributed the differences between the two groups of children to the higher frequency of exposure to this kind of stressors. However, they did not test this hypothesis. It has also been suggested that the need for emotional support of children with asthma may be stronger, because they experience more stress compared to their peers (Eiser, 1994). This hypothesis was based on results of adults. For example, mothers of chronically ill children had higher needs for social support than mothers of healthy children (Kazak, Reber, & Carter, 1988). This hypothesis has not been studied yet among children with asthma. The hypotheses posed above regarding asthmatic children’s experience of stress, coping strategies, and needs for emotional support, have not been tested so far. The present research studied children with asthma by looking for how much stress they experience at school, their ways of coping with it, and their reliance on emotional and informational support from significant others. The second research question was: Do children with asthma differ from their peers with respect to experiencing stress, coping strategies, and perceived social support? The experience of stress and coping strategies were examined with regard to two stressors, ‘problems with schoolwork’ and ‘rejection by peers’. Perceived social support was measured as quantity


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and quality of emotional and informational support from parents, teacher, and peers. In this chapter, the first research question is addressed in Section 4.3, and the second research question in Section 4.4. The conclusion will focus on the ultimate question whether the ‘typical asthma child’ exists.

4.2. Method 4.2.1. Subjects The asthma group consisted of 7944 children, 40 boys and 39 girls. All children attended primary school. The mean age of the children was 10.1 years (sd=1.09), the age range was 8-12 years. The mean age at which asthma was diagnosed was 5 years (sd=2.89). The majority of the children used asthma medication (n=71), of which 63 (89%) inhaled corticosteroids, and 56 (79%) used bronchodilators, at the time of the study. Eight children did not use medication regularly, and data on medication of another 8 children were missing. The educational level of the parents45 was as follows: 35% lower educational level, 19% middle educational level, 46% higher educational level46. Dutch was the most common language in most families (97.3%). A total of 359 children without asthma from the general school population were included, 187 boys (52%) and 172 girls (48%). The mean age of the children was 9.8 years (sd=1.28), 8-12 years. Twenty-six children were excluded from this sample, because they answered affirmatively on the question ‘Do you have asthma?’ A total of 229 parents (64%) returned the questionnaires. The educational level of the parents5 was as follows: 36% lower educational level, 39% middle educational level, 25% higher educational level6. Dutch was the most common language in most families (95%). The two groups of children were similar with regard to age, gender, and level of parental education; t-tests yielded no significant differences (t age (435)= 1.70, p=n.s.; t gender (436)= -0.44, p=n.s.; t education (194.1)= 1.70, p=n.s.).

44

The original sample size of 119 children with asthma was reduced to 79, as a result of excluding children from Grade 2 (n= 17) and from secondary school (n=23). 45 In two-parent families the parent with the highest educational level was selected. 46 Lower educational level = elementary education (LO), junior secondary vocational education (LBO), and junior general secondary education (MAVO); Middle educational level = senior secondary vocational education (MBO) and senior general secondary education (HAVO); Higher educational level = pre-university education (VWO), higher vocational education (HBO), and university education (WO).


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4.2.2. Measures The following measures were used to assess psychosocial functioning of the child: School Questionnaire (Schoolvragenlijst, Smits & Vorst, 1983). In the Netherlands, this instrument is a commonly used self-report measure for 9-16 year old children, and is considered psychometrically sound (Evers, Van Vliet-Mulder, & Ter Laak, 1992). It intends to measure the child's attitude towards school and him or herself with regard to school-related topics. Each item (80 in total) is answered on a three point Likert scale (1) that is true, (2) I don't know, and (3) that is not true. Three scales are identified: Motivation (sub-scales: task orientation, concentration in the classroom, attitude towards homework); Self-concept (sub-scales: verbal expression, self-confidence during tests, social competence); Well-being (sub-scales: pleasure at school, feeling socially accepted, relationship with teacher). Eight items do not belong to any of these scales, but provide an indication of the child's tendency to give socially desirable answers. For the purpose of the present study, the 24 items belonging to the scale 'well-being' were used. The mean of scores on the three subscales was used in the analyses, with a range of 24-72. Teacher ratings on well-being. The teacher was asked to rate the child's well-being at school by answering three questions. These questions are analogue to the three subscales of the scale ‘well-being’ of the ‘School Questionnaire’ (Smits and Vorst, 1983). Each question was rated on a nine-point Likert scale (1= --; 3= -; 5= ±; 7= +; 9= ++). 1. Does the child like going to school? 2. Is the child accepted by his or her classmates? 3. Does the child feel at ease in your presence? The first question refers to the subscale 'pleasure at school', the second question to 'feeling socially accepted', and the third question to the 'relationship with teacher'. Internal consistency of the three questions was assessed by means of computing Cronbach's Alpha Coefficient based on a sample of 392 primary school students (as described in Chapter 3). The Alpha was acceptable (.75). Child Behavior Checklist (CBCL 4/18; Achenbach & Edelbrock, 1983). The Dutch version of the CBCL for children 4-18 year of age was used ('Gedragsvragenlijst', Verhulst, Koot & Akkerhuis, 1990). This instrument is considered psychometrically sound (Evers, Van Vliet-Mulder, & Ter Laak, 1992), and is currently applied in various research studies throughout the


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Netherlands. It provides a standardised assessment of the child's social functioning as well as of behaviour and emotional problems as reported by the parent. It was decided not to use the section on social functioning, due to its low internal consistency (Cronbach’s Alpha= .50; Verhulst, Van der Ende, & Koot, 1997), and due to conceptual problems, especially regarding children with a chronic illness (Perrin, Stein, & Drotar, 1991; Thompson & Gustafson, 199647). The other section contains 118 items48 referring to behaviour and emotional problems. Examples are 'demands attention', 'jealous', 'feels worthless or inferior'. Parents are asked to score each item on a three point Likert scale, with regard to the child's behaviour within the last 6 months (0= 'doesn't apply at all'; 1= 'applies occasionally or sometimes'; 2= 'applies certainly or often'). The parent is asked to give additional information on 21 questions in an open-ended format, for example on the following items: 'repeats certain acts', 'obsessions' and 'sleeping problems'. This extra information is important to check whether the parent understood the item as it was intended, as well as to make sure that the reported behaviour had not already been recorded by another item. Scores on two general scales (or broad band scales) can be computed, one on Internalising Behaviour Problems and one on Externalising Behaviour Problems. Internalising behaviour problems refer to withdrawn behaviour, somatic complaints, and anxious/depressed mood, and Externalising behaviour problems to aggressive and delinquent behaviour. The range in raw scores for Internalising Behaviour Problems is 0-20, and for Externalising Behaviour Problems is 0-25. The correlation between the two scales was .55 for girls and .43 for boys (Verhulst et al., 1990). In the present study, the correlation coefficients were similar for girls with asthma (r= .54), but lower for boys with asthma (r= .25). The norms based on a Dutch population49 were released in 1997 (Verhulst, Van der Ende, & Koot, 1997). The use of the Internalising Scale for samples of chronically ill children has been criticised, e.g., by Perrin, Stein & Drotar (1991), who stated that the scores of children with a chronic illness are unfairly increased due to items that refer to physical symptoms (7 items50). Therefore, for the purpose of

47

Thompson and Gustafson (1996, p. 118) stated that a score on the social competence scale is especially problematic with regard to children with a chronic illness, because it may reflect the impact of the illness on children's ability to participate in social activities rather than their social competence. 48 Two items ('asthma' and 'allergy') were excluded from the analyses, as a result of criticism given by several researchers in child health (e.g., Perrin, Stein, & Drotar, 1991), namely that asthma was considered to be a psychopathological problem. In 1993 Achenbach agreed with this critisism. 49 The Dutch norm group consists of a population group of 1241 children between 4-11 years, who were not referred during the last 12 months for emotional and behavioural problems, and a clinical group of 1422 children referred to mental clinics. 50 These items are: pain, headaches, nausea, eye problems, skin problems, stomach ache, vomiting.


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this study the scores of the children with asthma on two items that especially apply to having asthma, namely eye problems (a possible allergic reaction) and skin problems (eczema), were left out in the analyses. Grades. The child's grades for reading and mathematics at the end of the school year were used as an indicator for the child's school performance. Using grades has been criticised in an influential book written by De Groot & Herwijnen (1981). Their main criticism is that grades given by different teachers are not comparable one against the other, because they use different frames of reference. As a consequence, a particular grade given by one teacher could be considered low, whereas the same grade given by another teacher could be high. This criticism was taken into account by computing z-scores for each child with respect to its class. Such z-scores provide an indication of the child's relative position to his or her class mates, while considering the range in grades of the total class. As such, z-scores could be considered as ranks. School absence rate. School records were used in order to obtain the total number of school days the child was absent due to illness during six months (January to June), as well as the frequency of absence. In addition, the teacher recorded the reason for the child's absence (illness, visit to a medical specialist, vacation, unknown). Only the days of absence due to illness were used. The following measures were used to assess the indices of stress processing of the child. The Stress and Coping Questionnaire for Children-school version (Boekaerts & Röder, 1995). This self-report questionnaire intends to measure children's emotional responses and coping strategies in school-related situations. The construction is based on the Student Stress and Coping Inventory (Boekaerts, Hendriksen, & Maes, 1987). The Stress and Coping Questionnaire for Children was developed in a pilot study on a primary school sample (n=186). The final version of the questionnaire consists of four situation descriptions, referring to two common stressors in children's school life, namely problems with school work and rejection by peers. ‘Problems with school work’ consists of the situation descriptions 'I failed to do something in class' and 'I have to do too much school work'. 'Rejection by peers' consists of the situation descriptions 'I am being bullied at school', and 'I am not allowed to join in play at school'. Children are asked to rate the frequency of confrontation with these four situations during the school year on a four-point Likert scale: (1) zero times, (2) once, (3)


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more than once, (4) more than ten times. The intensity of their emotional responses in these situations is assessed on annoyance, anger, anxiety, and sadness, on a four-point Likert scale (1) not at all, (2) somewhat, (3) rather, (4) very. Then, fourteen coping items are posed, which tap the following five coping strategies: (1) Approach, (2) Avoidance, (3) Support Seeking, (4) Aggression, (5) Crying. The children are asked whether they (1) never, (2) sometimes, (3) often, or (4) very often used each of the fourteen described coping behaviours when confronted with the situation. In Appendix B.1 a translation of the ‘Stress and Coping Questionnaire for Children’ is presented. Structure and reliability of the coping section were assessed on the basis of a primary school sample of 392 children. A confirmatory factor analysis was conducted to decide whether the 14 coping items adequately represented the five hypothesised coping strategies (LISREL-version 8, Jöreskog & Sörbom, 1993). The goodness-of-fit indices were acceptable (see Appendix F). The internal consistency of the five scales in each situation was satisfactory, following the removal of two items. Cronbach's Alphas ranged from .65 (Avoidance-Problems with Schoolwork) to .78 (Aggression-Rejection by Peers). The Social Support Questionnaire for Children (Boekaerts & Röder, 1995). The construction of this questionnaire was based on the Survey of Children's Social Support (Dubow & Ullman, 1987) and the social support literature (Sarason, Levine, Basham & Sarason, 1983). The Social Support Questionnaire for Children intends to measure quantity and quality of two social support functions, emotional and informational support. Quantity of support is assessed with respect to parents, teacher, and peers, in a yes/no format. Quality of support refers to the child's satisfaction with the provided support of all persons together, rated on a four-point Likert scale. The structure of the items was examined with a principal component analysis for variables with different measurement levels (PRINCALS; Gifi, 1990; SPSS Categories, 1998, p. 83ff). Reliability of the constructed support scales was determined by computing Cronbach's Alpha Coefficients. Five internally consistent scales could be constructed (Cronbach’s Alphas between .69 and .84).51 The questions referring to quality of support were also separated in emotional and informational support (Alphas respectively .82 and .77). The final questionnaire consists of eight questions: six questions on emotional support and two questions on informational support (see Appendix N).

51

Cronbach's Alpha of the scale 'emotional support from peers' was too low (.54), therefore it was decided to exclude this scale from further analyses.


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4.2.3. Procedure The asthma group. Children with asthma were recruited via general practitioners. A group of 120 general practitioners in the west of the Netherlands was asked to participate by means of a letter. This letter was sent in collaboration with the Department of General Practice Medicine of Leiden University. In total, 25 general practitioners and one asthma nurse agreed to participate in the study. They selected children with asthma in their practice, according to the following criteria for inclusion: 1. children had to be between the ages of eight and thirteen; 2. children had to be diagnosed with asthma, according to the definition of the Dutch General Practitioners Association: "The diagnosis asthma applies to children who experience one of the following symptoms: (1) periods of coughing and/or congestion of the chest, that occur at least five times a year, and, if not treated adequately, last for at least 10 days; (2) attacks of shortness of breath and predominantly expiratory wheezing; (3) shortness of breath and wheezing after physical exercise" (Dirksen et al., 1992; p. 55); 3. children had to use inhaled anti-inflammatory medication on a daily basis, possibly in combination with bronchodilators; 4. children had to be medically supervised by a general practitioner or paediatrician, and have visited their doctor at least once during the last year; 5. children had to be able to read at Grade 4 level; 6. at least one of the parents had to be able to read and write Dutch. The selected families were informed about the study by means of a letter, written by the researcher and mailed by the general practitioner. If they agreed to participate, the parents were requested to mail a reply-card to the researchers. About two-thirds of the families contacted agreed to participate, resulting in a sample size of 95 families. An advertisement was published in a Dutch magazine, called Contrastma, which is available to members of the 'Netherlands Asthma Foundation'. A further 25 families were included52, leading to a total sample size of 119. Before data collection the parents filled out an informed consent form. A meeting for the children was organised in each city or village where the families lived. During this meeting the children were invited to complete the three questionnaires. This meeting took place during out-of-school hours. A research assistant read aloud the questions to the children in Grades 3 and 4, in order to control for 52

During a telephone conversation the above mentioned criteria were checked.


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any differences in reading comprehension as much as possible. In some cases it was not possible for children to come to such meetings for practical reasons. In such cases, an appointment was made for a home visit. During the home visits the researcher and child went to a separate room to complete the questionnaires in order to avoid possible interference by the parent. The parental questionnaires were sent to the families six months after their child had filled in the questionnaires. Sixty-eight questionnaires were returned. At the end of the school year the teacher of the child received a letter with information about the aim of the study and a request to provide information about school performance, school absence rate and a rating on the child’s well-being at school. After two weeks a reminder was sent. In order to be able to compute z-scores, the grades for reading and mathematics of the child’s (anonymous) classmates were also obtained. Sixty-four teachers returned the forms. Data on school variables were missing due to three reasons. Firstly, teachers were occupied with regular school tasks that had to be finished at the end of the school year, especially staff meetings. As a result, they did not respond to the request at the end of the school year. The problem at the beginning of the new school year was that this teacher started with another class of children, which no longer motivated him or her to provide data about a child who was no longer in his or her class. Secondly, at some schools data about absence were no longer available at the end of the school year, because these had been destroyed. Thirdly, some teachers considered that it was not ethical to provide grades of the asthmatic child’s classmates, because these children were not involved in the study. The non-asthmatic group. Twenty-nine schools in the west of the Netherlands received a letter with information about the goal and procedure of the study. Four schools agreed to participate. The parents of the children in Grades 5 through 8 received a letter. In this letter, information about the goal of the study was given and permission to let the child participate was requested. Parents were given two weeks to object. Five families refused to participate, and the children of these families did school work during the data collection. The children completed the two questionnaires during school hours in the classroom. A research assistant read aloud the questions to the children in Grades 3 and 4, in order to control for any differences in reading comprehension as much as possible. The parental questionnaire was sent to the families six months after their child had filled in the questionnaires. At the end of the school year the teacher was asked to provide information about school performance, school absence rate and a rating on well-being at school of each child. Confidentiality was assured by using identification numbers rather than names on all


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questionnaires and data forms. 4.2.4. Statistical Analysis The data obtained from the Child Behavior Checklist were entered and scored by means of a computer programme developed by the authors of the CBCL (Achenbach & Edelbrock, 1983). The 1997 Dutch norms were used (Verhulst,Van de Ende & Koot, 1997). The data derived from the other questionnaires were entered by means of the Data-entry system Processor (1988). The advantage of both Processor and the CBCL computer programme is that they minimise the chance of errors in data files by (1) hindering further data entry whenever a value is entered that falls outside the ranges for valid values (2) providing the option of entering data twice and detecting inconsistencies between the first and second entry (called Match in the Processor programme). One fourth of the data were entered twice in order to detect mistakes. Systematic errors were subsequently corrected in the whole dataset. There were very few incidental errors. Moreover, the data were screened by performing elementary statistics such as frequency tables, means and standard deviations. Missing variables were deleted pair-wise, meaning that a case was deleted from an analysis involving correlations or covariances if it had no value on one of two items making up the coefficient. A disadvantage of pair-wise deletion is that the size and the constitution of the sample vary per measure of covariance. However, list-wise deletion was not a realistic option. For example, with regard to the 'Stress and Coping Questionnaire' list-wise deletion would exclude all children without siblings, because this group of children always had a missing value on the question regarding support from a sibling, and deleting these cases would lead to a distorted sample. The other alternative, substituting means for instance, would decrease variability within the group. Maximal variance was preferred with regard to the research question on differences within the group of asthmatic children (see Chapter 5). Discriminant analyses were used to test hypotheses whether mean differences of the asthmatic and non-asthmatic groups on linear combinations of dependent variables were likely to have occurred by chance. In discriminant analyses a linear combination of the dependent variables is constructed which maximises group differences (Tabachnick & Fidell, 1989). Stevens (1996) provided three statistical reasons for preferring a multivariate analysis over several univariate tests (p. 152): (1) the use of several univariate tests leads to inflated overall type I error rate, i.e., the probability of rejecting the null hypothesis when it is true. In this study, this would lead to the detection of differences between the two groups of children, when in fact they are similar; (2) discriminant analyses takes the correlation among the dependent variables into account. This applies to this study, because the correlation between the predictor variables is moderate to high (see Appendix S); (3) discriminant analyses is more powerful in


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case where the two groups differ only moderately but systematically from one another on several (correlated) variables. Together, the set of variables may reliably differentiate between the two groups, whereas the individual variables may not. One of the assumptions for carrying out discriminant analyses is that variance-covariance matrices within each group are sampled from the same population variance-covariance matrix and can be pooled to create a single estimate of error (Tabachnick & Fidell, 1989). When sample sizes are unequal (which is the case in this study), and the Box's M test for homogeneity of variance-covariance is significant at p < .001, then robustness is not guaranteed. Tabachnick and Fidell (1989) provided the following guideline for testing this assumption on samples of unequal sizes. If cells with larger samples produce larger variances and covariances, the multivariate significance test is too conservative, if cells with smaller samples produce larger variances and covariances, the test is too liberal (p. 379). These guidelines were applied when the variance-covariance matrices were examined, prior to performing discriminant analyses. Even though a discriminant analyses may show significant differences between groups, this does not necessarily mean that these differences are also meaningful in practice. It may occur that the best discriminant function still may not reliably discriminate between the two groups, in the sense that individuals of one group have a high probability of being allocated to the other group. One way of measuring the agreement between the original classification into asthma and non-asthma, and the classification predicted by the discrimant analysis is Cohen’s Kappa53 (see Cohen, 1977), which is the percentage agreement corrected for chance. Commonly, Kappa’s of .80 are deemed acceptable. Univariate tests were conducted on all variables in order to gain a descriptive understanding of the univariate extent of the differences between the groups. In Table 4.1 means, standard deviations, and the results of the univariate results are presented. The following differences between the asthma and the non-asthmatic group were found on a significance level of p < .01. First of all, children with asthma were more often and longer absent from school, compared to their classmates. They had higher scores on internalising behaviour problems and teacher-rated well-being at school. Moreover, children with asthma reported to be more often confronted with the school-related stressor ‘rejection by peers’. Finally, they reported to cope more aggressively when faced with the stressor ‘problems with schoolwork’. In order to evaluate to what extent these results held up within a multivariate context, four

κ= 53

∑ p −∑ p 1− ∑ p p

i+

ii

i+

p +i

+i


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discriminant analyses were conducted, one on each group of related variables; (1) indices of psychosocial functioning; (2) stress variables; (3) coping variables; and (4) social support variables.

4.3. Results 4.3.1. Similarities and Differences on Psychosocial Functioning Differences in psychosocial and school functioning between children with and without asthma were examined by performing a discriminant analysis with eight predictors: (1) child-rated well-being at school, (2) teacher-rated well-being at school, (3) internalising behaviour problems, (4) externalising behaviour problems, (5) grades for reading (z-scores), (6) grades for mathematics (z-scores), (7) total number of days absent from school, (8) frequency of absence. The dependent variable was group membership (asthma or no asthma). Only children who had a score on all eight variables could be included in the analysis. This resulted in a considerable shrinkage of the sample size: the asthma group consisted of 31 cases (out of 78), and the healthy group of 98 cases (out of 372).


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Table 4.1 Means, standard deviations, and Summary of Results Univariate Tests Variable

M M sd sd t p asthma healthy asthma healthy value value Child-rated well-being at school 63.13 63.32 7.39 7.63 10.01 .91 Teacher-rated well-being 67.60 -6.81 1.23 1.28 19.09 .01 Internalising behaviour problems 69.10 -5.14 7.58 4.89 11.58 .01 Externalising behaviour problems 66.52 -6.39 4.77 6.80 10.01 .92 -0.07 -0.02 0.86 0.93 10.23 .63 Grades for reading (z-score) Grades for mathematics (z-score) -0.06 -0.07 0.93 0.96 10.01 .94 Number of days absence -3.37 -1.21 4.95 2.13 11.85 .01 Frequency of absenteism -1.32 -0.60 1.35 0.97 10.91 .01 Frequency SW1 2.60 2.44 0.72 0.70 3.53 .06 2 2.33 2.07 0.85 0.83 6.20 .01 RP Annoyance SW 2.22 2.19 0.67 0.70 0.14 .71 RP 2.49 2.47 0.83 0.83 0.06 .82 Anger SW 1.83 1.70 0.70 0.67 2.48 .12 RP 2.32 2.22 0.82 0.88 0.97 .33 Anxiety SW 1.18 1.23 0.37 0.42 0.75 .39 RP 1.31 1.27 0.49 0.48 0.59 .44 Sadness SW 1.23 1.32 0.41 0.50 2.22 .14 RP 1.70 1.75 0.71 0.75 0.36 .55 Approach SW1 2.96 3.03 0.66 0.62 0.90 .34 2.15 2.13 0.66 0.64 0.03 .86 RP2 Avoidance SW 1.64 1.66 0.50 0.41 0.14 .71 RP 2.37 2.43 0.55 0.55 0.79 .38 Support Seeking SW 1.91 1.89 0.55 0.48 0.10 .75 RP 2.15 2.08 0.64 0.61 0.85 .36 Aggression SW 1.40 1.26 0.44 0.36 8.11 .01 RP 1.77 1.64 0.68 0.62 2.76 .10 Crying SW 1.13 1.13 0.35 0.32 0.01 .93 RP 1.27 1.32 0.46 0.51 0.48 .49 Quantity ES3 Parents 0.71 0.72 0.27 0.26 0.09 .76 ES Teacher 0.25 0.17 0.28 0.25 5.36 .02 ES Peers 0.28 0.24 0.18 0.20 2.60 .11 IS4 Parents 0.49 0.53 0.36 0.40 0.64 .43 IS Teacher 0.79 0.82 0.38 0.34 0.44 .51 Quality ES 3.08 3.10 0.61 0.62 0.04 .84 IS 3.23 3.24 0.69 0.68 0.02 .89 1 SW = Schoolwork; 2RP = Rejection by Peers; 3ES = Emotional Support; 4IS = Informational Support

Effect size .02 .56 .53 .01 .20 .13 .55 .56 .23 .31 .05 .03 .19 .13 .11 .94 .17 .07 .12 -.04 .04 .11 .04 .12 .36 .21 .00 .08 .24 .28 .18 .39 .04 .00 .04


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The multivariate test for homogeneity was significant (F (36, 10933)= 2.46, p < .001). The univariate tests of homogeneity of variance were non-significant for all variables, except for the variables 'internalising behaviour problems' and 'externalising behaviour problems'. Thus, the matrices of the two samples were significantly different on these two variables, and similar on the other six variables. The variance of the (smaller) asthma sample was larger, meaning that the significance test was too liberal. Therefore, it was decided to apply a strict α-level (α=.01, instead of .05), in the interpretation of the results of the discriminant analyses. The results of the discriminant analysis indicated a significant discriminant function (Wilks’Lambda=.76; χ2(8)=41.0; p < .001). The significant difference in psychosocial functioning between the asthmatic and non-asthmatic group was predominantly determined by four variables as derived from their correlation with the discriminant function: (1) frequency of absence (r=.59); (2) number of days absent (r=.57); (3) teacher-rated well-being (r=.47); (4) internalising behaviour problems (r=.43). Notwithstanding the statistical significance of the differences between the groups, the practical importance of these differences was limited, because the proportion of correctly classified subjects by the discriminant function was only 75% for the total group (75% for the non-asthmatic group and 73% for the asthmatic group). The measure of agreement corrected for chance, Cohen’s Kappa, was .44, which falls below the level of acceptable agreement. A problem was the relatively small sample size of the asthma group (n=31). A way to check whether the analysis was affected by the small sample size is to conduct two multivariate analyses of variance, one on the sample on which the discriminant analysis was conducted and one on the data with the least missings (which was the case for child-rated well-being at school and parent-rated internalising and externalising behaviour problems), and compare the results of the two MANOVA’s. The second MANOVA was conducted on a sample of 66 cases for the asthma group and 201 cases for the healthy group. In both cases, results indicated a significant overall difference between the two groups (F (8, 120)= 5.19, p < .001 for the small sample size and F (3, 263)= 8.17, p < .001 for the larger sample sizes). Univariate tests on the larger sample size demonstrated again that the two groups differed on internalising behaviour problems (F (3, 263)= 18.86, p < .001). Thus, the reduced sample size did not seem to have affected the results of the performed discriminant analysis, at least not with regard to the variables measured on the basis of child and parental reports.


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4.3.2. Similarities and Differences on Stress-Processing Differences between the children with and without asthma on stress-processing variables were examined by conducting three discriminant analyses: (1) on the stress variables, (2) on the coping variables, and (3) on the social support variables. The dependent variable was group membership (asthma or no asthma). Only children who had a score on all 27 variables could be included in the analysis. This resulted in a sample size of 76 cases in the asthma group and 337 cases in the healthy group. The multivariate tests for homogeneity were non-significant at p < .001 in all three cases. Regarding the stress variables, the results of the discriminant analysis indicated a marginally significant discriminant function (Wilks’ Lambda=.96; χ2(10)= 19.3; p < .04). The significant difference in psychosocial functioning between the asthmatic and non-asthmatic group was predominantly determined by two variables as derived from their correlation with the discriminant function: (1) occurrence of the stressor ‘rejection by peers’ (r=.55); (2) occurrence of the stressor ‘problems with school work’ (r=.42). Notwithstanding the statistical significance of the differences between the groups, the practical importance of these differences was limited, because the proportion of correctly classified subjects by the discriminant function was only 62% for the total group (64% for the non-asthmatic group and 57% for the asthmatic group). The measure of agreement corrected for chance, Cohen’s Kappa, was .14, which falls below the level of acceptable agreement. Regarding the coping variables, the results of the discriminant analysis indicated a nonsignificant discriminant function (Wilks’ Lamda=.96; χ2(10)= 15.8; p < .11). The proportion of correctly classified subjects by the discriminant function was 64% for the total group (66% for the nonasthmatic group and 53% for the asthmatic group). The measure of agreement corrected for chance, Cohen’s Kappa, was .13, which falls below the level of acceptable agreement. Finally, regarding the social support variables, the results of the discriminant analysis indicated a significant discriminant function (Wilks’ Lamda=.95; χ2(7)= 19.5; p < .007). The significant difference in psychosocial functioning between the asthmatic and non-asthmatic group was predominantly determined by two variables, as derived from their correlation with the discriminant function: (1) informational support from parent (r=.71), and emotional support from teacher (r=-.56). Notwithstanding the statistical significance of the differences between the groups, the practical importance of these differences was limited, because the proportion of correctly classified subjects by the discriminant function was only 62% for the total group (62% for the non-asthmatic group and 65% for the asthmatic group). The measure of agreement corrected for chance, Cohen’s Kappa, was .17, which falls below the level of acceptable agreement.


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4.4. Conclusion and Discussion The central question in this chapter was how children with asthma could be characterised by their processing of stress and by their psychosocial functioning. It could be concluded that children with asthma are alike other children in most respects. On the basis of univariate tests some differences were found. Children with asthma had higher scores on (1) frequency of absence; (2) number of days absent; (3) teacher-rated well-being; (4) internalising behaviour problems; (5) occurrence of the stressor ‘rejection by peers’; (6) use of aggression when coping with the stressor ‘problems with school work’. These differences were generally confirmed in the discriminant analyses. Despite these statistical differences between the asthmatic and non-asthmatic group, the practical importance was limited. The two groups could not reliably been distinguished from one another on the basis of the discriminant function. The best prediction of correct group membership was highest for the variables indicating psychosocial functioning, which was 75%. Thus, every three out of four children were assigned to the group they belonged, asthmatic or non-asthmatic. In other words, there was a considerable overlap between the distributions of the asthmatic and the non-asthmatic groups. For example, although the mean absence rate of children with asthma (M=3.37) was more than twice as high as that of children without asthma (M=1.21), the variance of the absence rate in the asthma group was high (sd=4.95). The hypothesis based on the literature that only parents of children with asthma reported psychosocial problems whereas the children themselves did not experience any problems was confirmed in the present study. Parents of children with asthma reported more internalising behaviour problems54, and the children reported a similar sense of well-being at school as compared to peers without asthma. Two explanations could be brought up for their different views. First, internal processes like internalising behaviour problems are more difficult to observe by others (Bruil, 1999; La Greca, 1990b). Secondly, parents and children evaluate from different perspectives. Whereas parents (adults) are usually future oriented, children are more oriented towards the here and now. At this age, children are especially concerned about 'being equal to other children' (Fiddelaers-Jaspers, 1991; Olweus, 1978; Van der Meer, 1988). As a result, children focus on similarities between themselves and their peers, whereas parents focus on the potential negative impact of asthma on their future regarding education, career, and marriage, for instance. No hypotheses were formulated on teacher ratings of children’s well-being at school. The teachers in this study reported that children with asthma felt happier at school than their peers. This

54

This higher score was not due to a higher score on physical symptoms, because these items were excluded from the analyses.


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result is remarkable, because the children themselves did not score higher on well-being at school. It could be assumed that the teachers who agreed to participate felt more positive about the children with asthma in their class, compared to the teachers who did not respond to the request for participation. Another explanation could be that the teachers of the primary school sample had to rate all children in their class, whereas the teachers of the asthma sample only rated the child with asthma. Reporting on several subjects might have led to ‘regression to the mean’. The higher scores of the teachers could also be due to the fact that their expectation of asthma having a negative impact on children’s well-being did not prove to be true. As a result, they evaluated children’s well-being more positively. Despite the differences discussed above, children with asthma were predominantly alike their peers. The grades they obtained for reading and mathematics were similar to their classmates. The latter result was expected on the basis of studies that assessed school performance by objective measures (Bender, 1995; Celano & Geller, 1993; Gutstadt, Gillette, Mrazek et al., 1989). As expected, parents of children with asthma did not report more externalising behaviour problems, such as aggression, than parents of children without asthma. It was expected that a high absence rate would have negatively affected the child’s feelings of well-being at school. This was not the case, children with asthma reported being as happy at school as their peers, while being absent more often. We should realise, however, that absence from school can have many reasons, with opposing effects on well-being, including exacerbations of the disease, treatment, and social avoidance. Another hypothesis was that children with asthma would experience a higher level of stress at school. From their higher school absenteeism it was inferred that they would be more often confronted with problems with school work. Moreover, it was assumed that restrictions in play and sports activities, high school absence rate, and having something unusual, namely their disease, would place children at risk for feeling socially isolated. Although children with asthma reported a statistically higher level of social isolation, this difference was not of practical significance. On the whole, it could be concluded that children with asthma do not experience more stress at school than children without asthma, despite significant higher absence rates. Even if they were confronted with a higher number of school stressors, the children themselves did not experience it as such. It may also be the case that their coping strategies served as a buffer against a higher confrontation with these stressors. However, no confirmation was found on the hypothesis that children with asthma coped differently from children without asthma. Like other children, children with asthma coped with problems with school work by approaching the task (e.g., by trying harder), or asking for


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help. When being rejected by peers, both asthmatic and non-asthmatic children coped by using various coping strategies, such as avoiding these children (e.g., by playing with someone else), confronting them (e.g., by telling them that bullying is mean), or by seeking support. Crying was not a common reaction of children to these stressors, nor is aggressive behaviour in response to problems with schoolwork. Although children with asthma reported more aggression than children without asthma when having problems with schoolwork, this result should be handled with caution. This difference in scores was detected on the basis of applying several univariate analyses of variance, which risks the detection of differences that only occurred by chance. Explanations for the unexpected result that the coping resources of children with asthma were not affected by their higher experience of stress could also be sought in the validity of the instrument. The Stress and Coping Questionnaire for Children might not be sensitive enough to detect differences in coping strategies between children with and without asthma. More specifically, the coping strategies ‘approach’ and ‘avoidance’ could be too broad, including conceptually diverse coping strategies. For example, ‘avoidance’ contains both ‘distraction’ (‘think of something nice’) and ‘behavioural avoidance’ (‘go to the bathroom’), which may in fact be separate coping strategies, as is the case in the Schoolagers’ Coping Strategies Inventory by Ryan-Wenger (1990) (See Chapter 2, Table 2.1). It could be that children with asthma predominantly differ from other children on cognitive coping strategies, as in the studies by Olson, Johansen, Powers, Pope & Klein (1993) and Spirito, Stark & Tyc (1994). Children with asthma were also similar to other children with regard to the social support they experienced from parents, teacher, and peers. Children reported receiving emotional support mainly from their parents, and informational support from teachers, as was expected (see Chapter 2). Informational support was also often provided by parents. Both asthmatic and non-asthmatic children were often satisfied55 with the emotional and informational support they received. The hypothesis based on studies among adults that the higher stress experience due to asthma would lead to higher needs for social support was not confirmed. Parents, teachers, and peers did not support a child with asthma more than any other child, and the child with asthma reported being satisfied with this. This conclusion may imply that children with asthma do not need more support, despite experiencing more stress. This result highlights the pitfalls of formulating hypotheses for children on the basis of studies among adults. Clearly, children have different needs than adults. Another explanation is that the contents of support are different for children with and without asthma, which were not measured by the Social Support Questionnaire for Children. This instrument may give the impression that children 55

Mean score of satisfaction was 3 on a four-point Likert scale (1=never; 2=sometimes; 3=often; 4=always).


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with asthma are satisfied with the same amount of support as children without asthma, whereas in fact, their satisfaction is related to the contents of support they receive. This different content may have buffered the increased level of stress the children with asthma experienced. As no information was gained on the contents of social support, we are not sure whether the satisfaction of children with asthma was based on qualitative higher support from significant others. One limitation of this study was that the sample size shrunk considerably, from 119 to 31 cases in the asthma group and from 372 to 98 cases in the primary school group, when comparing the two groups on psychosocial functioning. Secondary multivariate analyses of variance showed that the results were still the same with a larger sample size based on data of the variables with the least missings (child and parent measures). Children with asthma still had higher scores on parent-rated internalising behaviour problems, and had similar scores on externalising behaviour problems and child-rated wellbeing at school. Thus, despite the small sample sizes, the results of this study seem to be robust and consistent with other studies. A merit of this study was that the two groups of children were compared by means of applying discriminant analyses, instead of several t-tests. Most studies on psychosocial functioning reviewed in Chapter 1 (Section 1.5.2) conducted univariate analyses, which have major shortcomings. The application of a multivariate technique assured that detected differences are not caused by type I errors. A major advantage of using a discriminant analysis in this study was that the correlation between the predictor variables was taken into account, which allowed the detection of a set of variables on which the two groups differed. In conclusion, children with asthma mostly resembled children without asthma, which implies that their behaviours were typical of ‘a primary school child’. They were alike other children in their experience of school-related stress, in their use of coping strategies when confronted with school-related stressors, in the quantity of emotional and informational support from parents, teachers, and peers, and their satisfaction with it. School performance was as high as that of their classmates, and they felt equally at ease and accepted at school. Children with asthma only differed in that their school absence rates were higher, and that their parents reported higher scores on internalising behaviour problems. Thus, it seems that the differences between children with asthma are as large as the differences between children without. The question that follows is how differences between children with asthma might be explained. Could risk or protective factors be identified that mediate the effect of asthma on children’s psychosocial functioning of the child? In the next chapter individual differences between children with asthma are the focus of attention.

Individual differences

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Chapter 5 A Characterisation of Children with Asthma: Individual Differences 5.1. Introduction In the previous chapter it was concluded that the ‘typical asthma child’ does not exist. Although children with asthma were more absent from school on the average, and obtained higher mean scores on internalising behaviour problems, they were similar to their peers in most respects. They were alike in their use of coping strategies when confronted with school-related stressors, in the quantity of emotional and informational support from parents, teachers, and peers, and their satisfaction with it. Their school performance was as high as their classmates, and they felt evenly at ease and accepted at school. In this chapter the central question is what is special about children who manage to adjust to their asthma. Individual differences between children with asthma are the focus of attention by means of studying risk and protective factors that mediate the effect of asthma on psychosocial functioning. Individual adaptation processes are described best by means of stress-coping models, such as the model for coping with chronic diseases by Maes, Leventhal, and De Ridder (1996), which is based on Lazarus and Folkman’s model (1984) (see Chapter 2). In these models, coping is considered as an important mediator between the event (the disease) and the consequences (the person’s physical and psychosocial functioning). This notion about coping served as the starting point for this study. The central idea was that the ways children handle stress, rather than the disease per se, determine how they function in daily life. A vast amount of studies have been conducted on the effectiveness of coping among chronically ill children. Firm conclusions regarding the effectiveness of coping strategies are hard to draw, due to several reasons. First, comparability of findings with regard to coping with stress is severely limited as a result of differences in conceptualisation of coping and its measurement. Some studies measure coping in general, thus regardless of the stressor, whereas other studies consider coping as a situation-specific construct, i.e., coping related to a specific stressor. Moreover, the diversity in events under study is immense (see Chapter 2 for more details). A second reason is that there are no universally adaptive coping strategies that are suitable for all persons in all situations, as has been argued by Lazarus and Folkman (1984) and acknowledged by several other authors (e.g., Compas, Worsham & Ey, 1992; Reid, Dubow & Carey, 1995). Questions such as "which coping strategies are effective and which are not?"


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cannot be answered in general, and they should be replaced by: Which coping strategies are effective in which situations for which individuals under what conditions, and for which outcomes? In order to answer the latter question by empirical research a theoretical model is needed. A model which refers to the different parts of the question is the extended model of coping with chronic diseases described by Maes, De Ridder, and Leventhal (1996) (see Figure 5.1). In this model ‘coping’ is viewed in relation to a specific event, namely the disease-related event, thus which coping strategies … in which situations of the question posed above is covered. For which individuals is covered by demographic characteristics (3), appraisals (4), and internal resources (6). And under which conditions is covered by life events (1), disease and treatment characteristics (2), and external resources (5). Whether a coping strategy is effective or not also depends on the outcome of interest. A particular coping strategy may have positive and negative outcomes (Zeidner & Saklofske, 1996). For example, a child who does not play on grass with his friends may avoid an asthma attack (positive outcome), and he may feel left out (negative outcome). In the model the outcomes of the coping process are measured as physical, psychological and social consequences.

5

1a

2

DISEASE AND TREATMENT CHARACTERISTICS

OTHER LIFE EVENTS

1b

DISEASE-RELATED EVENT

4


APPRAISAL OF DEMANDS AND GOALS

3

EXTERNAL RESOURCES

EMOTIONAL RESPONSE

7

PSYCHOLOGICAL CONSEQUENCES

7

COPING BEHAVIOUR

SOCIAL CONSEQUENCES

7

PHYSICAL CONSEQUENCES COGNITIVE RESPONSE 6

Figure 5.1

INTERNAL RESOURCES

An Extended Model for Coping with Chronic Diseases

(Source: Maes, Leventhal, & De Ridder, 1996)

According to the model, the relationship between a disease-related event and the consequences for a person is mediated by the individual’s appraisal of the event (whether it is stressful or not) and his or her coping strategies. The appraisal of an event is affected by other life events, disease and treatment characteristics, and demographic characteristics. For example, a child may appraise an asthma attack as


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being more stressful on his first day at school (an example of a life event), or when he has more severe asthma (an example of disease characteristics). An example of a demographic characteristic is age. Younger children may be more frightened when confronted with shortness of breath than older children. The appraisal of an event determines the coping strategy someone chooses. For instance, a person who experiences much anxiety when confronted with shortness of breath is more likely to choose avoidance as a coping strategy (Schlösser, 1989). The choice of a coping strategy is also determined by external resources and internal resources. An example of external resources is social support. Someone who is surrounded by a supportive social network may be more likely to ask for help when facing an asthma attack. Internal resources refer to physical and personality characteristics of an individual, for example self-efficacy. This theoretical model formed the basis of the research described in this chapter. For the purpose of this study, Maes et al.’s model was extended with school-related events, namely ‘problems with school work’ and ‘rejection by peers’56. The aim of this study was to characterise the group of children with asthma who developed psychosocial problems by means of their emotional responses (stress), coping and social support from others. In the literature, most studies examined only bivariate relationships, for example between severity of asthma and behaviour problems in the child (Eksi, Molzan, Savasir & Güler, 1995; MacLean, Perrin, Gortmaker & Pierre, 1992). Some studies included a third variable as well, for instance, the mediating role of coping in the relationship between experienced stress and self-worth, as was done by Rossman (1992) in a study among healthy children. No hypotheses can be generated with regard to the theoretical model as a whole nor with regard to the interplay between the variables. As a consequence, the study of stress processing in asthmatic children is explorative, rather than driven by hypotheses. This study is the first in its kind that examined more than three variables specified by a model especially developed for children with asthma. It is exploratory, because no hypotheses could be generated for children with asthma on the basis of the studies conducted so far. Another reason for its exploratory nature was that the question posed above is too complex to be answered on the basis of one single study. The theoretical model served as a guideline for the identification of a set of variables to be included in the study, rather than providing hypotheses on certain relationships between the variables.

56

School-related stressors are viewed as an operationalisation of the theoretical concept ‘other life events’.


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5.2. Conceptual Model and Research Question The theoretical model by Maes and colleagues formed the basis for the construction of a conceptual model that guided the research study among children with asthma (see Figure 5.2).

3

5

CHARACTERISTICS OF ASTHMA 1b

1a

ASTHMA-RELATED EVENT

7

WELL-BEING AT SCHOOL

7

BEHAVIOUR PROBLEMS

7

SCHOOL PERFORMANCE

7

SCHOOL ABSENTEEISM

SOCIAL SUPPORT

2

EMOTIONAL RESPONSE

COPING STRATEGIES

SCHOOL-RELATED EVENT

4


Figure 5.2

6

COPING WITH ASTHMA IN DAILY LIFE

Conceptual Model that guided the Study

The outcome variables in the theoretical model, namely 'psychological, social and physical consequences' were operationalised as well-being at school, behaviour problems, school performance, and school absenteeism. School is one of the main areas in a child’s life that provides opportunities for peer interactions, besides providing a place for the acquisition of academic skills (Weitzman, 1984). Owing to the fact that children spend a great deal of their time at school, their functioning in general is determined to a large extent by how they function at school. Thus, the child’s well-being at school, school performance and school absence rate were chosen as indicators of psychosocial functioning of a child. In addition, parental reports of the child’s behaviour problems were measured. The child’s emotional responses and coping strategies were measured in relation to a diseaserelated event, namely shortness of breath, and two school-related events, namely ‘problems with school work’ and rejection by classmates. ‘Shortness of breath’ was chosen, because this is one of the most frequent and stressful events for children with asthma (Kohlman-Carrieri, Kieckhefer, Janson-Bjerklie & Souza, 1991). The two school-related events were also considered as stressful, according to Dutch studies among fifth and sixth graders (Hendriksen, 1990; Hendriksen & Boekaerts, 1988). ‘Problems with school work’ and ‘rejection by classmates’ were chosen as examples of school-related events, because these were reported as stressful, according to Dutch studies among fifth and sixth graders (Hendriksen, 1989; Hendriksen & Boekaerts, 1988), and because they recur on a daily basis (Repetti, McGrath, and Ishikawa (1999). These two stressful situations are considered to be associated with


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important childhood outcomes (see Repetti, McGrath, and Ishikawa, 1999, p. 345). Social support was chosen as an example of 'external resources'. In the literature, social support is considered an important variable when confronted with stress (Quittner, 1992; Siegel, 1992). Studies that include both coping and social support are recommended by various researchers (La Greca & Wallander, 1992, p. 120). The child’s coping with asthma in daily life was chosen as an example of 'internal resources'. This variable provides an indication of children’s attitude towards their asthma, and will be especially important when considering disease-related events. Symptoms of asthma and asthma duration were chosen as examples of ‘disease characteristics’. Only children that used inhaled anti-inflammatory medication on a daily basis were included in the study in order to restrict the number of variables in the study. Three demographic characteristics were included: the child’s age, gender, and educational level of the parents. Life events were not measured, which was done in order to cut down on the number of variables. The research question derived from the conceptual model is: How can differences in psychosocial functioning (well-being at school, behaviour problems, school performance and absenteeism) between children with asthma be accounted for (by their emotional responses and coping strategies when confronted with asthma-related and school-related events, by their coping with asthma.

5.3. Method 5.3.1. Subjects A group of 119 children with asthma participated in the study, 63 boys (53%) and 56 (47%) girls. The mean age of the children was 10.2 years (sd=1.7), ranging from 8 through 14 years. Most children attended primary schools; 96 children (81%) were in grades 2 through 6, the rest of the children attended secondary school. The mean age at which asthma was diagnosed was four and a half years (sd=2.7), whereas they showed their first symptoms of asthma at the mean age of three years. Seventyseven parents (71%) reported symptoms before the age of five, which is somewhat lower than the percentage (87%) reported by Gerritsen (1989). Reported symptoms of asthma were: 85% shortness of breath, 73% coughing, 52% wheezing, 49% congestion on the chest, 43% eczema, and 44% irritation of the eyes. In addition, 33% (n=36) of the parents reported additional symptoms other than those mentioned above, such as being tired (9), headaches (5), hyperactive or irritable (4), and sneezing (3). The majority of the children used asthma medication (n=100), eight children did not use medication on a daily basis, and data on medication were missing from eleven children. The most commonly used bronchodilator was Ventolin® (54%), and the most commonly used corticosteroid was Becotide®


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(36%). A detailed description of the disease characteristics of the asthma group, such as symptoms, allergens, and visits to the doctor, is given in Appendix E. In nine families (8%) there was only one parent. The educational level of the parents57 was as follows: 34% lower educational level, 22% middle educational level, 44% higher educational level58. Dutch was the most common language in most families (97.3%). At Time 1 self-report data from the 119 children with asthma were collected on emotional responses, coping, social support, and well-being at school. At Time 2, six months later, data were collected on the children's psychosocial and school functioning. One hundred and eleven of the 119 parental questionnaires were returned (93%). 64% of the teachers (n=76) provided data on school absenteeism and school performance of the children, and rated the children’s well-being. Children who reported not having encountered the stressor 'shortness of breath' of the 'Stress and Coping Questionnaire for Children-asthma version' were excluded from the analyses (n=9). The reason for this was that their answers on emotional responses and coping strategies might be less reliable. The topic of hypothetical situations was already discussed in Chapter 3 (Section 3.6), and there it was concluded that Cronbach Alphas of the coping scales were not affected by the children's answers to hypothetical situations. Nevertheless, an event such as an asthma attack requires specific skills (mainly with regard to 'approach coping'), which makes it necessary to rely on recent experiences. This argument applies less to the events ‘problems with school work’ and 'rejection by peers', that do not require specific skills to cope with them. 5.3.2. Child Measures The children completed the following four questionnaires: 1. The Stress and Coping Questionnaire for Children: School version and Asthma version (Boekaerts & Röder, 1995). This self-report questionnaire intends to measure children's emotional responses and coping strategies in one disease-related event and two school-related events. The construction was based on the Student Stress and Coping Inventory (Boekaerts, Hendriksen, & Maes, 1987). The school version of The Stress and Coping Questionnaire for Children was developed in a pilot study on a primary school 57

In two-parent families the parent with the highest educational level was selected. Lower educational level = elementary education (LO), junior secondary vocational education (LBO), and junior general secondary education (MAVO); Middle educational level = senior secondary vocational education (MBO) and senior general secondary education (HAVO); Higher educational level = higher vocational education (HBO), pre-university education (VWO), and university education (WO).

58


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sample (n=186), and its structure and reliability was assessed on the basis of another primary school sample of 392 children. The asthma version was developed in a pilot study on a sample of 29 children with asthma. Its structure and reliability was assessed on the basis of the sample of 119 children with asthma. The final version of the questionnaire consists of six situation descriptions, four descriptions referring to two events in children's school life, namely ‘problems with school work’ and rejection by peers (which is the school version of the questionnaire), and two descriptions referring to an event in the life of children with asthma, namely shortness of breath (which is the asthma version of the questionnaire). ‘Problems with school work’ consists of the situation descriptions 'I failed to do something in class' and 'I have to do too much school work'. 'Rejection by peers' consists of the situation descriptions 'I am being bullied at school', and 'I am not allowed to join in play at school'. ‘Shortness of breath’ consists of the situation descriptions ‘I am short of breath in the classroom’ and ‘I am short of breath at home’. For details see Appendix B.1. Children were asked to rate the frequency of confrontation with these six stressors during the school year on a four-point Likert scale: (1) zero times, (2) once, (3) more than once, (4) more than ten times. Emotional responses were assessed by means of intensity of four emotions, i.e., annoyance, anger, anxiety, and sadness, on a four-point Likert scale: (1) not at all, (2) somewhat, (3) rather, (4) very. Fourteen coping items were posed, which tap the following five coping strategies: (1) Approach, (2) Avoidance, (3) Seeking support, (4) Aggression, (5) Crying. The children were asked whether they (1) never, (2) sometimes, (3) often, or (4) very often used each of the fourteen described coping behaviours when confronted with the situation description (See Appendix B1 for a translation of the ‘Stress and Coping Questionnaire for Children’). The question whether the 14 coping items adequately represent the five coping strategies was confirmed by means of a confirmatory factor analysis (LISREL-version 8, Jöreskog & Sörbom, 1993). The internal consistency of the five scales in each event was satisfactory. Cronbach's Alpha Coefficients ranged from .63 (Approach-Asthma) to .78 (Aggression-Rejection by Peers). Four items were removed, because they lowered the Cronbach’s Alpha (See Appendix H). 2. The Asthma Coping Questionnaire for Children (Boekaerts & Röder, 1995). No measure was available to assess children’s coping with asthma in daily life. Therefore, a questionnaire was developed for this purpose, on the basis of the Asthma Coping List for Adults, developed by Maes and Schlösser (1987). Coping with asthma in daily life refers to the child’s way of managing his or her asthma in daily life when not suffering from shortness of breath’. A sample of 29 children with asthma was asked to evaluate the items on comprehensibility. The structure and reliability of the questionnaire was assessed on the basis of the sample of 119 children with asthma. The final


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version consists of 15 items referring to two ways of coping, namely ‘Asthma Control’ and ‘Danger Control’. ‘Asthma control’ refers to typical management behaviours, such as taking medication before exercising and paying attention to symptoms. ‘Danger control’ refers to negative emotions with regard to asthma, for example being afraid of becoming short of breath, as well as to avoidant behaviours, such as taking it easy when exercising. The Cronbach’s Alpha Coefficients were satisfactory (see Nunnally, 1978; p. 245), given the shortness of the questionnaire (for both scales, Alpha= .71). A translation of the items is given in Appendix B.3. 3. The Social Support Questionnaire for Children (Boekaerts & Röder, 1995). The construction of this questionnaire was based on the Survey of Children's Social Support (Dubow & Ullman, 1987) and the literature on social support (e.g., Sarason, Levine, Basham & Sarason, 1983). The Social Support Questionnaire for Children intends to measure both quantity and quality regarding two functions of social support, emotional and informational support. Quantity of support is assessed with respect to parents, teacher, and peers, in a yes/no format. Quality of support refers to the child's satisfaction with the support provided by all persons together, rated on a four-point Likert scale. The final questionnaire consists of eight questions, six questions measuring emotional support and two questions measuring informational support. In Appendix B.2. a translation of the questions is provided. Its structure and reliability was assessed on the basis of a primary school sample of 392 children. The structure of the items referring to quantity of social support was examined by means of a special type of principal component analysis (PRINCALS: SPSS-Categories, 1990; Gifi, 1990), which is specifically designed to deal simultaneously with variables with different measurement levels, especially nominally measured and ordinal variables. Reliability of the constructed support scales was determined by computing Cronbach's Alpha Coefficients. Five internally consistent scales were constructed by computing means on the six questions representing emotional support and on the two questions representing informational support: emotional support from parents (α=.84), emotional support from teacher (α=.75), emotional support from peers (α=.78), informational support from parents (α=.83), informational support from teacher (α=.69). The Cronbach's Alpha Coefficient of the scale 'emotional support from peers' was too low (.54), therefore it was decided to exclude this scale from further analyses. The questions referring to quality of support were also separated in emotional and informational support. The Alpha's of the two scales were satisfactory, respectively .82 and .77. 4. School Questionnaire (Schoolvragenlijst, Smits & Vorst, 1983). This instrument is a commonly used self-report measure for 9-16 year old children in the


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Netherlands, and is considered psychometrically sound (Evers, Van Vliet-Mulder, & Ter Laak, 1992). It contains 80 items and is intended to measure the child's attitude towards school and him or herself with regard to school-related topics. Each item is answered on a three-point Likert scale, namely (1) that is true, (2) I don't know, and (3) that is not true. For the purpose of this study, the 24 items belonging to the scale 'well-being' were used. The scale consists of three sub-scales: (1) pleasure at school, (2) feeling socially accepted, (3) relationship with teacher. In this study, the mean of scores on the three sub-scales was used in the analyses. The range of scores on this scale was 24-72. 5.3.4. Parent Measures The parents of the children completed the following two questionnaires: 1. Parent Questionnaire. The Parent Questionnaire consisted of questions about the child’s asthma and demographic characteristics. The variables ‘number of symptoms of asthma’, 'number of asthma attacks', and 'asthma duration' were selected to represent the concept 'asthma characteristics' of the conceptual model. The questions representing the variable 'number of symptoms of asthma' were: How often during the last six months has your child had: (1) shortness of breath, (2) wheezing, (3) coughing, (4) congestion of the chest, (5) eczema, (6) irritation of the eyes. Response categories were: never, sometimes, often, very often (scores one to four). The mean of these six questions was taken as the child’s score on ‘symptoms of asthma’. Preliminary statistical analyses on the variable 'number of asthma attacks' pointed to missing information from a considerable number of children (19 in total), its high skewness, and its low correlation with all variables. On the basis of these results it was decided to exclude the variable 'number of asthma attacks' from further analyses. The duration of the child’s asthma was counted in years, starting at the child’s age at which the diagnosis ‘asthma’ was made. 2. The Child Behavior Checklist (CBCL 4/18; Achenbach & Edelbrock, 1983). The Dutch version of the CBCL for children 4-18 year of age was used ('Gedragsvragenlijst', Verhulst et al., 1992). This instrument is considered psychometrically sound (Evers, Van Vliet-Mulder, & Ter Laak, 1992), and is currently applied in various research studies throughout the Netherlands. It provides a standardised assessment of the child's social functioning as well as of behaviour and emotional problems as reported by the parents of children in the 4-18 year age range. Due to conceptual and methodological problems with the section on social functioning, as described in the literature (Mooney, 1984; Perrin, Stein, & Drotar, 1991), it was decided not to use this section. The other section


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contains 118 items referring to behaviour and emotional problems. Parents are asked to score each item on a three-point Likert scale, with regard to the child's behaviour within the last 6 months: 0 'doesn't apply at all'; 1 'applies occasionally or sometimes'; 2 'applies certainly or often'. Scores on two general scales could be obtained, i.e., Internalising Behaviour Problems and Externalising Behaviour Problems. Internalising behaviour problems refer to withdrawn behaviour, somatic complaints, and anxious/depressed mood, and Externalising behaviour problems to aggressive and delinquent behaviour. The range in scores for Internalising Behaviour Problems is 0-20, and for Externalising Behaviour Problems is 0-25. The use of the Internalising Scale for samples of chronically ill children has been criticised, e.g., by Perrin, Stein & Drotar (1991), who stated that the scores of children with a chronic disease are unfairly increased due to items that refer to physical symptoms (7 items59). Therefore, the scores of the children with asthma on two items that especially apply to having asthma, namely eye problems (a possible allergic reaction) and skin problems (eczema), were rated as zero for all children. 5.3.4. Teacher Measures The teacher was contacted to provide information on the following: 1. Teacher ratings on well-being. The teacher was asked to rate the child's well-being at school by answering three questions. These questions were analogous to the three sub-scales of the ‘School Questionnaire’ (Smits and Vorst, 1983). Each question was rated on a nine-point Likert scale (1= --; 3= -; 5= ±; 7= +; 9= ++)60. 1. Does the child like going to school? 2. Is the child accepted by his or her classmates? 3. Does the child feel at ease in your presence? The first question refers to the sub-scale 'pleasure at school', the second question to 'feeling socially accepted', and the third question to the 'relationship with teacher'. Internal consistency of the three questions was assessed on the basis of a sample of 392 primary school students by means of computing a Cronbach's Alpha Coefficient, which was acceptable (α=.75). 2. Grades. In addition, the child's grades for reading and mathematics at the end of the school year were used as an indicator for the child's school performance. Using grades has been extensively criticised in 59 60

These items are: pain, headaches, nausea, eye problems, skin problems, stomach ache, vomiting. The scores 2, 4, 6, and 8 take the intermediate positions.


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an influential book written by De Groot and Herwijnen (1981). Their main criticism is that grades given by different teachers are not comparable, because they use different frames of reference. As a consequence, a particular grade given by one teacher could be considered low, whereas the same grade given by another teacher could be high. This criticism was taken into account by computing z-scores for each child. Z-scores provide an indication of the child's relative position to his or her classmates, while considering the range in grades of the total class. 3. School Absence Rates. School records were used in order to obtain the total number of school days the child was absent due to illness during six months (January to June), as well as the frequency of absence. The absence data were not normally distributed (see Chapter 4). Therefore, a log transformation was applied to the number of days absent as well as to the frequency of absence. In Table 5.1A and 5.1B an overview is presented of the variables in this study, and the instruments that were used to measure these variables. As can be seen in Table 5.1B, a total of 44 predictor variables were employed.

Table 5.1A. Overview of Instruments and Outcome Variables INSTRUMENT

INTENDS TO MEASURE

THEORETICAL

(VARIABLES)

CONCEPT

Child’s well-being at school

Well-being at school

Child’s well-being at school

Well-being at school

Child Behavior

Externalising behaviour problems

Behaviour problems

Checklist (Achenbach &

Internalising behaviour problems

School Questionnaire subscale well-being (Smits & Vorst, 1983) Teacher Questionnaire (three questions)

Edelbrock, 1983) School Records

Grades for reading and math

School performance

Specific Questionnaire

Number of days absent and

School absenteeism

frequency of absence during last six months


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Table 5.1B. Overview of Instruments and Predictor Variables

INSTRUMENT

INTENDS TO MEASURE (VARIABLES)

# VAR

THEORETICAL CONCEPT

Stress and Coping

•

Questionnaire for

related stressors: (1) problems w.

Children - school

Schoolwork, (2) rejection

version (Boekaerts &

•

Röder, 1995)

sadness in each event

•

Frequency of occurrence of two school-

Intensity of annoyance, anger anxiety,

Frequency of use of five coping strategies

2

School-related event (1a)

8

Emotional response (2)

10 Coping Strategies

(approach, avoidance, support seeking, aggression, crying) in each event Stress and Coping

•

Questionnaire for

related stressor: shortness of breath

Children - asthma

•

version (Boekaerts &

sadness in the disease-related event

Röder, 1995)

•

Frequency of occurrence of one disease-

1

Asthma-related event (1b)

Intensity of annoyance, anger anxiety, 4

response (2)

Frequency of use of five coping strategies

(approach, avoidance, support seeking,

Emotional

5 Coping strategies

aggression, crying) in the disease-related event Asthma Coping

•

Questionnaire for

(1) asthma control (2) danger control

Frequency of use of two coping modes,

2

Coping with asthma in daily

Children (Boekaerts

life (6)

& Röder, 1995) Social Support

•

Questionnaire for

parents, teacher, and peers

Children (Boekaerts

•

& Röder, 1995)

parents and teacher •

Quantity of emotional support from

Quantity of informational support from

Quality of emotional and informational

support

3

2

2

Social support (5)


INSTRUMENT

147

INTENDS TO MEASURE (VARIABLES)

# VAR

THEORETICAL CONCEPT

Parent Questionnaire

•

Frequency

of

coughing,

wheezing,

1

asthma (3)

shortness of breath •

Asthma duration in years

1

•

Child’s gender and age

2

Demographic

•

Parental education

1

characteristics (4)

Total number of predictor variables Note

Characteristics of

44

Numbers in brackets refer to corresponding numbers in Figure 5.2 Conceptual Model

#VAR = number of variables measured 5.3.5. Procedure Children with asthma were recruited via a group of 120 general practitioners in the west of the Netherlands. A letter was sent to each of them in collaboration with the Department of General Practice Medicine of the Leiden University. In total, 25 general practitioners and one asthma nurse agreed to participate. They selected children with asthma in their practice according to the following criteria: 1. children had to be between the ages of eight and thirteen; 2. children had to be diagnosed with asthma according to the definition of the Dutch General Practitioners Association: "The diagnosis asthma applies to children who experience one of the following symptoms: (1) periods of coughing and/or congestion of the chest, that occur at least five times a year, and, if not treated adequately, last for at least 10 days; (2) attacks of shortness of breath and predominantly expiratory wheezing; (3) shortness of breath and wheezing after physical exercise" (Dirksen et al., 1992; p. 55); 3. children had to use inhaled anti-inflammatory medication on a daily basis, possibly in combination with bronchodilators; 4. children had to be medically supervised by a general practitioner or specialist, and have visited their doctor at least once during the last year; 5. children had to be able to read at Grade 4 level; 6. at least one of the parents had to be able to read and write Dutch. The selected families were informed about the study by means of a letter written by the researcher and mailed by the general practitioner in order to ensure confidentiality. If they agreed to


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participate, the parents were requested to mail a reply-card to the researchers. About two-thirds of the families (95) contacted agreed to participate. In addition, an advertisement was published in a Dutch magazine, called Contrastma, which is available to members of the 'Dutch Asthma Foundation'. An additional 30 families contacted the researchers by phone. During this telephone conversation the above mentioned criteria were checked, which led to the inclusion of a further 25 families. Before data collection the parents filled out an informed consent form. Then, a meeting for each of the children was organised during out-of-school hours in the place where they lived. During this meeting the children61 were invited to complete four questionnaires: (1) The Stress and Coping Questionnaire for ChildrenSchool version and Asthma version (Boekaerts & Röder, 1995); (2) The Asthma Coping Questionnaire for Children (Boekaerts & Röder, 1995); (3) The Social Support Questionnaire for Children (Boekaerts & Röder, 1995); (4) School Questionnaire (Schoolvragenlijst, Smits & Vorst, 1983). The sequence in which the questionnaires were completed was random, in order to avoid order effects. A research assistant read aloud the questions to the children in Grades 3 and 4, in order to control for any differences in reading comprehension as much as possible. In some cases it was not possible for children to come to the meetings, mainly for practical reasons. In such cases, an appointment was made for a home visit. During the home visits the researcher and child went to a separate room in order to avoid possible interference by the parent. The questionnaires to be completed by the parents were sent to the families six months after their child had filled in the questionnaires. At the end of the school year the teacher of the child received a letter with information about the aim of the study and a request to provide information about the child's school performance and absence rate. The children's and parents' confidentiality was ensured by using identification numbers rather than names on all questionnaires and data forms. 5.3.6. Statistical Analysis The data obtained from the Child Behavior Checklist were entered and scored by means of a computer programme developed by the authors of this questionnaire. The norms of the Dutch population were used, which were released in 1997 (Verhulst, Van de Ende & Koot, 1997). The data derived from the other questionnaires were entered by means of the Data-entry system Processor (1988). The advantage of both Processor and the CBCL computer programme is that they minimise the chance of errors in data files by (1) blocking further data entry whenever a value is entered that falls outside the ranges for valid values (2) providing the option of entering data twice and detecting inconsistencies

61

The number of children during one meeting ranged between three and ten.


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between the first and second entry (called Match in the Processor programme). One fourth of the data were entered twice in order to detect systematic mistakes, and these were corrected subsequently throughout the whole data file. Moreover, the data were screened by performing elementary statistics such as frequency tables, means and standard deviations. Missing variables were deleted pair wise, meaning that a case was withdrawn from the analysis when one of two items had a missing value. A disadvantage of pair wise deletion is that the size and the constitution of the sample vary per measure of covariance. However, list wise deletion or substitution by the mean were not valid options. For example, with regard to the 'Stress and Coping Questionnaire' list wise deletion would exclude all children without siblings, because this group of children always had a missing value on the question regarding support from a sibling. As a consequence, deletion of these cases would lead to a distorted sample. The other alternative, substitution by means, would decrease variability within the group. With regard to the research question on individual differences maximal variance was preferred. Whenever one wants to assess the relationship between a dependent (or criterion) variable and several correlated independent (or predictor) variables, as is the case in the research question, multiple regression analysis is the designated statistical method. The result of regression is an equation that represents the best prediction of a dependent variable from several independent variables (see e.g., Tabachnick & Fidell, 1989, p. 123). This equation takes the following form: Y'= b0 + b1 X1+ b2 X2+ ... + bk Xk where Y' is the predicted value on the criterion variable, b0 is the Y intercept, the X's represent the predictor variables, and the b's are the coefficients of the predictor variables (Tabachnick & Fidell, 1989, p. 124). It is common to report standardised b's (β's) when interpreting the results of regression analyses, because these allow better comparisons between the predictor variables on their impact in predicting the criterion variable. The assumptions from the hierarchically structured model for coping in children with asthma were followed. It prescribes that a situation exerts an influence on children’s functioning through emotional responses, coping strategies and social support (see Figure 5.2, Conceptual Model). This suggests the application of a hierarchical multiple regression analysis, in which the predictor variables are entered in the regression equation in an order specified by the model. The order may be dictated by two guidelines (Tabachnick & Fidell, 1989, p. 143). The first guideline is that the less important variables are given higher priority for entry. In this study less importance was given to the variables that cannot serve as objects for intervention, thus to the three demographic characteristics and the two


150

asthma characteristics. The second guideline is that the predictor variables that are closest to the criterion variable are entered first. At each step, the entered set of variables was evaluated in terms of what it adds to the equation at its point of entry. In this way, the variance accounted for by the last set of variables, over and above the variance accounted for by sets of variables entered before, could be determined.

5.4. Results 5.4.1. Hierarchical Multiple Regression Analyses Eight hierarchical multiple regression analyses were performed, one for each criterion variable. The 44 predictor variables were entered in the order of five steps. In Step 1 a set of variables regarding demographic characteristics was entered; child’s gender, age of the child, educational level of the parents. In Step 2 a set of variables regarding asthma characteristics was entered; symptoms during the last six months, and asthma duration. In Step 3 a set of variables regarding the child’s coping strategies in three events was entered: approach, avoidance, seeking support, aggression, and crying. In Step 4 a set of variables regarding the child’s emotions in the three events was entered: annoyance, anger, anxiety, and sadness. Also in Step 4, variables regarding social support were entered (quantity of emotional and informational support from parents and teacher, quantity of emotional support from peers, quality of emotional and informational support), as well as variables regarding the child’s coping with asthma: asthma control and danger control. Finally, in Step 5 frequency of occurrence of the three events (‘shortness of breath’, ‘problems with school work’, ‘rejection by peers’) was entered. All sets of variables were evaluated for their significance in explaining variance of the criterion variable. The results are presented in Table T.1 through Table T.8 (Appendix T). As can be seen in the tables, only a few steps were significant (see those printed in bold). The demographic variables contributed significantly as a set in explaining the criterion variables grades for reading, grades for mathematics, and internalising behaviour problems. Moreover, the set of variables ‘frequency of occurrence of specific events’ contributed significantly to explaining the criterion variable ‘internalising behaviour problems’ and coping strategies contribute to explaining child-rated well-being at school. Although the total proportion of explained variance was high, between 46% for externalising behaviour problems and 87% for frequency of absence rate, none were significant. These non-significant results could be explained by the large number of variables that were entered in a forced order. Small or negligible effects of a considerable number of variables may obscure less small but important effects of a small number of variables. The regression technique detects mainly


151

error in the set of variables, and therefore declares the overall effect as non-significant. Another explanation could be that the level at which the predictor and criterion variables have been measured do not correspond. More concretely, the predictor variables are measured at a specific level, thus referring to specific events, emotions, and persons, whereas the criterion variables are measured at a general level, thus not referring to specific events, emotions, and persons. In order to test this explanation, the 37 situation-specific variables62 were aggregated in two ways, called Intermediate Level and General Level (see Table 5.2).

Table 5.2. Overview of Predictor Variables at Three Levels of Analysis THEORETICAL

OPERATIONALISATION

OPERATIONALISATION

OPERATIONALISATION

CONCEPT

AT

AT THE INTERMEDIATE

AT

LEVEL

LEVEL

LEVEL

3 variables

1 variable

1 variable

frequency of occurrence of

frequency of occurrence of all

frequency of occurrence of all

three stressors:

three stressors together


12 variables

4 variables

1 variable

4 emotions:

4 emotions

experienced stress (overall

•

annoyance

•

annoyance

measure of 4 emotions) in all

•

anger

•

anger


•

anxiety

•

anxiety

•

sadness

•

sadness

SPECIFIC EVENT

EMOTIONAL

THE

SPECIFIC

•

schoolwork

•

rejection

•

shortness of breath

THE

GENERAL

RESPONSE

when confronted with one asthma-related

and

in all three stressors together

two

school-related stressors COPING

15 variables

5 variables

5 variables

5 coping strategies

5 coping strategies

5 coping strategies

STRATEGIES

62

This number refers to the 37 variables that were measured situation-specifically, thus without the 7 variables that did not refer to specific situations or persons; 3 demographic variables, 2 asthma variables and 2 ways of coping with asthma in daily life.


152

THEORETICAL

OPERATIONALISATION

OPERATIONALISATION

OPERATIONALISATION

CONCEPT

AT

AT THE INTERMEDIATE

AT

LEVEL

LEVEL

LEVEL

•

approach

•

approach

•

approach

•

avoidance

•

avoidance

•

avoidance

•

support seeking

•

support seeking

•

support seeking

•

aggression

•

aggression

•

aggression

•

crying

•

crying

•

crying

THE

SPECIFIC

THE

GENERAL

when confronted with one

when confronted with all

when confronted with all

asthma-related



7 variables*

4 variables

2 variables

quantity

quantity

quantity

2 functions:

2 functions:

of all providers together, no

•

emotional

•

emotional

distinction in function

•

informational

•

informational

and

two

school-related stressors SOCIAL SUPPORT

3 providers:

of all providers together

• teacher • parents • peers quality

quality

2 functions:

2 functions:

•

emotional

•

emotional

•

informational

•

informational

quality

*

The scale ‘informational support from peers’ was deleted due to low internal consistency

Note

Double lines refer to variables that were constructed similarly at two levels of analysis

At the Intermediate Level, the variables were aggregated across events (problems with school work, rejection by peers, and shortness of breath) and providers of support (parents, peers, and teacher). For example, quantity of emotional support was measured in general (thus without reference to the three providers of support) by computing the mean of quantity of support from the parents, the teacher, and peers. This aggregation led to 14 predictor variables (see Table 5.2). At the General Level, the variables were aggregated across events and providers of support as well as across emotions and functions of support. For example, the variable ‘quantity of support’ was measured by computing the mean of


153

emotional support from parents, teacher and peers, and of informational support from parents and teacher. This aggregation led to 9 predictor variables. In Table 5.2 the double lines refer to variables that were constructed in a similar way at two levels of analysis. This was the case for three variables. First of all, the variable ‘frequency of occurrence with a specific event’ was the same at the Intermediate and General Level, because further aggregation was not possible. Secondly, the five variables with regard to coping were similar at the Intermediate and General Level, because aggregation of the five coping strategies (approach, avoidance, seeking support, aggression, crying) into one “overall” coping strategy did not make sense conceptually. Thirdly, quality of ‘emotional support’ and ‘quality of informational support’ were the same at the Specific and Intermediate Level, because this variable was not measured with regard to various providers of support, as was the case for ‘quantity of support’ at the Specific Level. It was decided to perform two sets of hierarchical multiple regression analyses on each criterion variable, one with predictor variables at the Intermediate Level and the other with predictor variables at the General Level. Again, only a few sets of variables contributed significantly to the explanation of the criterion variables. It could be concluded that the aggregation of variables did not lead to significant results. Thus, it is not plausible that the level at which the variables were measured was responsible for the insignificant results. Other explanations could be found in the design of the study. The size of the sample is too small for model testing, thus the application of a hierarchical multiple regression analysis is not appropriate. Therefore, it was decided to: (1) compute zero-order correlations between each criterion variable and the predictor variables at the Specific Level; (2) conduct standard multiple regression analyses (backwards elimination) with predictor variables at the three levels of analysis. The results of these statistical analyses provided insight into how the predictor variables behaved in their interplay and in the process of explaining the criterion variable. In this way, the conceptual model could be used to explore the data set. 5.4.2. Pearson Correlations and Multiple Linear Regression Analyses Pearson correlations were computed between the eight outcome variables and the predictor variables. In addition, multiple linear regression analyses (backwards elimination, pIN= .04999 and pOUT= .05) were conducted on the eight criterion variables with the predictor variables at the three levels of analysis. Residual scatterplots were examined in order to test assumptions of normality, linearity, and homoscedasticity between predicted scores of the criterion variable and errors of prediction. In addition, outliers were tested on their impact in the regression analysis, using the Cook's D (distance) index for the detection of influential observations. All Cook's scores were under the level of acceptance, < 1.0.


154

(Hair et al., 1995, p. 151). Yet, subjects with a Cook's D larger than .25 were eliminated. In total, three subjects were removed from the data set; one in the regression analysis with the criterion variable ‘externalising behaviour problems’, one in the regression analysis with the criterion variable ‘child-rated well-being’, and one in the regression analysis with the criterion variable ‘teacher-rated well-being’. After elimination of influential subjects the regression analyses were conducted again and the output was examined on suppressor variables. Suppressor variables are defined by Conger (1974) as variables “which increase the predictive validity of another variable (or a set of variables) by its inclusion in a regression equation” (p. 36). Thus, a suppressor is not defined by its own regression weight but rather by its effects on other variables in a regression system. Two conditions signal the presence of suppressor variables (1) the simple correlation between predictor variable and criterion variable is substantially smaller than the beta weight for the predictor variable, (2) the simple correlation and beta weight have opposite signs (see Tabachnick & Fidell, 1989, p. 161). In this study, the first condition was observed in the regression analyses of four criterion variables: internalising behaviour problems, grades for reading, grades for mathematics, and frequency of absence. In these cases, the correlation between one of the predictor variables and the criterion variable was smaller than the beta weight for this predictor variable (see variables marked in Table 5.4 through Table 5.7). In order to detect the suppressor variable, changes in regression coefficients for the suppressed variable were examined by systematically leaving each significant predictor variable out of the equation. The identification of the suppressor variables is presented in Appendix U. Next, the results of the analyses on the eight criterion variables are discussed in four sections: Well-being at School, Behaviour Problems, School Performance, and Absenteeism. The grouping of the eight variables into four sections was based on their conceptual meaning. To investigate whether this grouping could be underscored by empirical results, Pearson correlations were computed between the eight criterion variables (see Table 5.3). The numbers printed in bold represent the correlations of the outcome variables that conceptually belong together. Only the correlation between child-rated wellbeing and teacher-rated well-being was low (-.04), the other correlations were between .46 (Behaviour Problems) and .83 (Absence). The correlation between internalising and externalising behaviour problems is of the same magnitude as the one reported by the authors of the Child Behavior Checklist, which was .43 for boys and .55 for girls (Verhulst et al., 1996, p. 185 and p. 187). It is expected that the results of the criterion variables with high intercorrelations (r > .50) are similar.


155

Table 5.3. Correlations between Criterion Variables 1. 2. 3. 4. 5. 6. 7. 8.

Child-rated well-being Teacher-rated well-being Internalising behaviour Externalising behaviour Grades reading Grades mathematics Number of days absent Frequency of absence

(1) 1.00 -.03 .25 .36**

(2)

(3)

(4)

1.00

. 1.00 .47**

. 1.00

.22

.22

(5)

1.00 .63**

(6)

(7)

(8)

1.00 .87**

1.00

1.00

Notes: Correlations with pair wise deletion of subjects (n ≈100: variables1,3,4, and 54