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The experience of hospitalization for parents of a chronically ill child : an interpretive study Robinson, Carole Anne 1983

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THE EXPERIENCE OF HOSPITALIZATION FOR PARENTS OF A CHRONICALLY ILL CHILD: AN INTERPRETIVE STUDY PY CAROLE ANNE ROBINSON B.Sc.N., University of Alberta, 1976 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING ' i . i n THE FACULTY OF GRADUATE STUDIES The School of Nursing We accept t h i s thesis as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA A p r i l 1983 (t) Carole Anne Robinson, 1983 In presenting t h i s thesis i n p a r t i a l f u l f i l m e n t of the requirements for an advanced degree at the University of B r i t i s h Columbia, I agree that the Library s h a l l make i t f r e e l y available for reference and study. I further agree that permission for extensive copying of t h i s thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. I t i s understood that copying or publication of t h i s thesis for f i n a n c i a l gain s h a l l not be allowed without my written permission. Department of Nursing  The University of B r i t i s h Columbia 1956 Main Mall Vancouver, Canada V6T 1Y3 Date A p r i l 15, 1983 DE-6 (3/81) i i ABSTRACT THE EXPERIENCE OF HOSPITALIZATION FOR PARENTS OF A CHRONICALLY ILL CHILD: AN INTERPRETIVE STUDY This i n t e r p r e t i v e study was designed to e l i c i t parents' perceptions of t h e i r c h r o n i c a l l y i l l children's h o s p i t a l i z a t i o n s f o r the purposes of: c l a r i f y i n g the meaning of h o s p i t a l i z a t i o n within the context of chronic i l l n e s s ; gaining i n s i g h t into chronic i l l n e s s i n fa m i l i e s having a c h i l d with chronic disease; and, determining i n t e r -ventions which may make h o s p i t a l i z a t i o n episodes more p o s i t i v e . Data were c o l l e c t e d through in-depth interviews with nine parents from s i x fam i l i e s having h o s p i t a l i z e d , c h r o n i c a l l y i l l c h i l d r e n . A semi-structured guide of questions was used for the i n i t i a l interviews. A d d i t i o n a l questions were generated by the data i t s e l f which enabled the researcher to construct accounts with the p a r t i c i p a n t s that addressed and explained t h e i r perspectives. An a n a l y t i c framework of concepts, categories and themes which represent the parents' perspective was developed through constant comparative analysis of the accounts. The parents explained h o s p i t a l i z a t i o n , a facet of t h e i r long-term i l l n e s s experiences, i n r e l a t i o n to the themes of: acquiring i n f o r -mation necessary to t h e i r understanding, c o n t r o l l i n g aspects of the experience f o r the i l l c h i l d and for themselves, and r e l a t i o n s h i p s within the bureaucratic s e t t i n g . L i t t l e has been written about h o s p i t a l -i z a t i o n within the context of chronic childhood i l l n e s s e s ; however, rela t e d research studies were used for discussion purposes. I t i s apparent that the concerns the p a r t i c i p a n t s described are representative of the i l l n e s s experience rather than s o l e l y associated with h o s p i t a l i z a t i o n . i i i The data reveal that parents have a unique perspective with regard to h o s p i t a l i z a t i o n and the children's i l l n e s s e s which i s based on t h e i r experiences with i l l n e s s and t h e i r unique understanding of c h r o n i c i t y . One can also conclude that parents have some common areas of concern during times of h o s p i t a l i z a t i o n which are useful guides for assessment. In terms of nursing p r a c t i c e , t h i s implies that the parent's unique perspective must be e l i c i t e d before care that i s mutually s a t i s -f y ing can be negotiated. The implications f or future research i n the area r e l a t e to studies which w i l l enhance nurses' understanding of c l i e n t s ' perspectives. i v TABLE OF CONTENTS Abstract ' i i Table of Contents i v L i s t of Figures v i Acknowledgements v i i Chapter 1: INTRODUCTION Background to the Problem 1 Conceptual Framework 4 Problem Statement 6 Purposes • 7 Introduction of the Methodology 7 The o r e t i c a l and Methodological Perspectives 8 Definitions of Terms 11 Assumptions 12 Limitations 13 Summary 13 Chapter 2: REVIEW OF SELECTED LITERATURE The I l l n e s s Experience 14 Chronic Childhood I l l n e s s 17 H o s p i t a l i z a t i o n of a Chronically 111 Child 22 Summary 24 Chapter 3: METHODOLOGY Selection of P a r t i c i p a n t s 26 C r i t e r i a f o r Selection 26 Selection Procedure 27 C h a r a c t e r i s t i c s of the Pa r t i c i p a n t s 28 Data C o l l e c t i o n 30 Procedure f or Data C o l l e c t i o n 30 Construction of Accounts 33 E t h i c a l Considerations 34 A. Informed Consent and Risk/Benefit 34 B. Privacy 35 C. C o n f i d e n t i a l i t y 35 Data Analysis 35 Summary 36 V Chapter 4: THE PARENTS' ACCOUNTS The Trajectory of Chronic I l l n e s s 39 Interface with the Bureaucracy 45 Acquiring Information 45 Managing the Child's I l l n e s s Experience i n Hos p i t a l 52 Modifying the Emotional Impact of H o s p i t a l i z a t i o n f o r Self 59 Relationships i n the Hospital Setting. 64 The Relationship between Parent and Sick Child 64 The Parents' Relationships with Health Care Professionals. 67 Summary 73 Chapter 5: DISCUSSION OF FINDINGS Introduction 76 The Trajectory of Chronic I l l n e s s 76 Interface with the Bureaucracy 83 Acquiring Information 83 Managing the Child's I l l n e s s Experience i n Hospital 90 Modifying the Emotional Impact of H o s p i t a l i z a t i o n f o r Self 102 Relationships i n the Hos p i t a l Setting 109 The Relationship between Parent and Sick C h i l d 109 The Parents' Relationships with.Health Care Pr o f e s s i o n a l s . I l l Summary 116 Chapter 6: SUMMARY, CONCLUSIONS AND IMPLICATIONS FOR PRACTICE AND RESEARCH Summary 119 Conclusions and Implications for Nursing 123 Implications for Further Research, 126 Bibliography 129 Appendix A 137 Appendix B 138 L i s t of Figures Figure 1: Health Care System v i i Acknowledgements I would l i k e to thank the members of my thesis committee, Dr. Joan Anderson and Jinny Hayes Morris, f or t h e i r support and encouragement. They helped me to learn and f o r that I am g r a t e f u l . To the parents who so w i l l i n g l y gave me t h e i r time and the benefit of t h e i r experience I o f f e r my warmest thanks. F i n a l l y , I would l i k e to thank my family and friends who shared both the highs and the lows of my experience;. Chapter 1 INTRODUCTION Background to the Problem Current trends i n the health of i n d i v i d u a l s i n Western Society have resulted i n an increased focus on chronic, long-term i l l n e s s e s (Conley, 1973). These trends are a r e f l e c t i o n of the impact that tech-n o l o g i c a l advances have made i n bringing communicable diseases under control and, subsequently, increasing the l i f e expectancy of i n d i v i d u a l s who suffer.from chronic i l l n e s s e s . Many of those affected are c h i l d r e n . Tonkin's recent c h i l d health p r o f i l e (1981) indicates that there i s no systematic follow up of s i c k infants born i n B r i t i s h Columbia which means "there are l i t t l e data on the health status or l e v e l of function of com-promised infants born during the l a s t decade" (p.40). However, the figures do indic a t e that about 15,100 infants with at l e a s t one congenital anomaly have been born i n B r i t i s h Columbia during the l a s t decade and that approximately 22,000 infants and ch i l d r e n have been registered as having a d i s a b i l i t y during the same period (Tonkin, 1981, p.40). These figures are minimal estimates but provide evidence that chronic i l l n e s s among chil d r e n i s a s i z a b l e health problem. The l i t e r a t u r e indicates that when a c h r o n i c a l l y i l l c h i l d i s cared f o r i n the home, the implications f o r family l i f e are broad and pervasive (Burton, 1975; Creer and C h r i s t i a n , 1976; Kaplan and Mearig, 1977; McCollum, 1975). These authors have found that parents function as primary p r a c t i t i o n e r s i n managing the c h i l d ' s i l l n e s s on a day-to-day basis and, as a r e s u l t , contact with health professionals i s l i m i t e d . -1-2 However, a s i g n i f i c a n t contact point between health professionals and parents of c h r o n i c a l l y i l l c h i l d r e n occurs when the c h i l d i s h o s p i t a l i z e d , a period which affords health professionals a valuable opportunity to gain i n s i g h t into the family's long-term i l l n e s s experience. P e d i a t r i c p r a c t i t i o n e r s are placing more emphasis on the parents' r o l e i n providing support for t h e i r h o s p i t a l i z e d c h i l d and, as a r e s u l t , are concerned about giving care which best meets both t h e i r needs "(Chan & L e f f , 1981; Marlow, 1977; Whaley & Wong, 1 9 7 9 ) . This becomes p a r t i c u l a r l y important when h o s p i t a l i z a t i o n i s a frequently repeated facet of a family's long-term i l l n e s s experience. Unfortunately, a poverty of theory regarding the h o s p i t a l i z a t i o n of c h r o n i c a l l y i l l c h i l d r e n provides l i t t l e support fo r i n s i g h t f u l understanding of the family's needs at that time. In 1974, the American Academy of P e d i a t r i c s stated: the a b i l i t y of nurses to work cooperatively with parents i s the best way to deal with a frightened c h i l d . Often parents are best able to understand what the youngster wants and what he may mean i n describing h i s i l l n e s s (Newton, 1974, p . 2 4 ) . This r e i n f o r c e s the importance of taking the parents' perceptions into, account when planning care. The researcher's c l i n i c a l experience with f a m i l i e s having c h r o n i c a l l y i l l c h i l d r e n has resulted i n several s t r i k i n g , personal observations regarding the impact of long-term i l l n e s s on family l i f e . These observations, which w i l l be discussed below, provided the i n i t i a l impetus for the study. The f i r s t i s the widespread, pervasive influence of the c h i l d ' s i l l n e s s on the day-to-day l i f e of each family member. Cert a i n l y the influence varies from family to family; however, the con-s i d e r a t i o n generally given the i l l n e s s and the r e s u l t i n g modifications i n l i f e s t y l e are remarkable. The second s t r i k i n g aspect i s the r e l a t i v e 3 ease with which l i f e s t y l e modifications i n r e l a t i o n to i l l n e s s are accepted. This i s not to imply that changes are easy but they are quickly incorporated into everyday l i f e and become semantically defined a "normal" part of family routine. In other words, the fam i l i e s generally cope very w e l l with the demands of the i l l n e s s which seems to be a r e f l e c t i o n of t h e i r a t t i t u d e that coping i s not a choice-making issue; that i s , one does what one can within the constraints of the s i t u a t i o n . T h i r d l y , i t became evident that the fa m i l i e s are constantly facing new i l l n e s s problems, many of which are unpredictable and associated with an uncertain outcome. H o s p i t a l i z a t i o n , t y p i c a l l y characterized by a high degree of u n p r e d i c t a b i l i t y and uncertainty, i s a time when many of the parents' fears and anxieties are activated. This r e s u l t s i n a s h i f t i n g of the family's p r i o r i t i e s around the sic k c h i l d , p a r t i c u l a r l y f o r the parent who stays with the c h i l d i n h o s p i t a l . It seems that these parents approach h o s p i t a l i z a t i o n i n somewhat d i f f e r e n t ways than do parents of usually w e l l c h i l d r e n h o s p i t a l i z e d f o r acute episodic i l l n e s s e s . At t h i s point, the researcher became interested i n exploring how i t i s that parents of c h r o n i c a l l y i l l c h i l d r e n manage so w e l l with long-term d i f f i -c u l t i e s and, more s p e c i f i c a l l y , with frequent h o s p i t a l i z a t i o n s . The study described here was designed to systematically explore parents' perceptions regarding the h o s p i t a l i z a t i o n s of t h e i r c h r o n i c a l l y i l l c h i l d r e n . Information gained w i l l contribute to health pr o f e s s i o n a l s ' understanding of parents' experfences with chronic childhood i l l n e s s rand, more s p e c i f i c a l l y , h o s p i t a l i z a t i o n as a facet of the experience. The conceptual framework which guided the study was developed by Kleinman (1977, 1978) through work i n the area of cross c u l t u r a l medicine. 4 Kleinman's studies led him to conceptualize the health care system i n a much broader manner than i s t r a d i t i o n a l l y the case. This w i l l be d i s -cussed i n the following section. Conceptual Framework Western Society's view of the health care system and of i l l n e s s has been dominated by the professional medical i n s t i t u t i o n s and t h e i r focus on objective, s c i e n t i f i c , biomedical explanations for i l l n e s s . Kleinman (1978) proposes that the health care system i s much more i n c l u s i v e than these p r o f e s s i o n a l i n s t i t u t i o n s and, i n f a c t , "represents a t o t a l c u l t u r a l organization of medically-relevant experiences, an integrated system of s o c i a l (and personal) perceptions, use, and evaluation" (p.414). Within t h i s system, p r o f e s s i o n a l i z a t i o n and compartmentalization of health values has resulted i n a "separate body of medical b e l i e f s and p r a c t i c e s . . . [which^ e x i s t apart from the general c u l t u r a l m i l i e u " (p.414). Kleinman (1978) conceptualizes the health care system as comprised of three d i f f e r e n t but i n t e r a c t i n g sectors which are s o c i o c u l t u r a l l y shaped and defined by t h e i r own b e l i e f s , r o l e s , behaviours and i n s t i t u t i o n s . The system i s depicted below: S o c i o c u l t u r a l Systems System(s) Popular Culture System System(s) (Professional) of Health Care (Individual and Family Based) Figure 1: Health Care System (Kleinman, 1978, p.422) 5 The sectors, termed "medical systems," serve to order and control i l l n e s s . Kleinman (1978) views a l l attempts to understand i l l n e s s and treatment as "explanatory models" which d i f f e r among the medical systems due to d i f f e r i n g health value h i e r a r c h i e s . Individuals i n the p r o f e s s i o n a l medical sector explain, understand, and respond to i l l n e s s i n terms of the b i o l o g i c a l and psychological phenomenon of disease; whereas, the popular medical culture bases i t s explanatory models on personal and s o c i a l experience with i l l n e s s . Thus, a conceptual d i s t i n c t i o n i s made between disease and i l l n e s s . Disease i s defined as "malfunctioning or maladapta-t i o n of b i o l o g i c and psychophysiologic process i n the i n d i v i d u a l " , whereas i l l n e s s encompasses the "personal, interpersonal, and c u l t u r a l reactions to disease or discomfort" (Kleinman, Eisenberg & Good, 1978, p.252). These authors assert that neither professional nor popular view of i l l n e s s are s u f f i c i e n t unto themselves to explain the phenomenon. However, the dominance of the professional view of i l l n e s s has resulted i n a consistent disregard for the experience of being i l l i n both p r a c t i c e and research. Health professionals are coming to r e a l i z e that an understanding of the c l i e n t ' s explanatory model i s necessary to the negotiation of mutually s a t i s f y i n g and e f f i c a c i o u s care (Leininger, 1978). Kleinman (1978) states that "explanatory models can be o b j e c t i v e l y e l i c i t e d as more or le s s formally structured coherent accounts of r e a l i t y , though they may be and offen are ambiguous and changing" (p.421). This conceptual framework has been used by other nurse researchers studying the phenomenon of chronic i l l n e s s (such as Anderson, 1981; Hayes Morris, Knox & Lynam, 1982). T y p i c a l l y , care of a s i c k c h i l d i n h o s p i t a l i s negotiated between health professionals and the c h i l d ' s parents who, as members of the popular medical culture, have explanatory models based on t h e i r experience with 6 i l l n e s s . The conceptual framework directed the researcher to design a study which explored parents' perception regarding the h o s p i t a l i z a t i o n s of t h e i r c h r o n i c a l l y i l l c h i l d r e n i n order to gain a better understanding of explanatory models associated with long-term i l l n e s s experience. The s p e c i f i c research problem addressed i n t h i s study developed from the previously stated concerns regarding health pr o f e s s i o n a l s ' a b i l i t y to appropriately meet the needs of parents with c h r o n i c a l l y i l l c h i l d r e n , and w i l l be discussed i n the following section. Problem Statement The l i t e r a t u r e indicates that people i n t e r p r e t i l l n e s s i n many ways and that these various i n t e r p r e t a t i o n s guide health behaviours (Kleinman et a l . , 1978). When a family experiences i l l n e s s , each member int e r p r e t s the i l l n e s s i n a personally meaningful fashion according to the s o c i a l and c u l t u r a l determinants that are s i g n i f i c a n t to the s i t u a t i o n . Although the great majority of health care occurs i n the personal domain (Kleinman et a l . , 1978) there are times where pro f e s s i o n a l assistance i s sought and h o s p i t a l i z a t i o n becomes a facet of therapeutic management. As such, h o s p i t a l i z a t i o n becomes part of the i l l n e s s experience. How i s h o s p i t a l i z a t i o n of a c h i l d experienced when the context i s chronic rather than acute i l l n e s s ? This problem was addressed by focusing on the meaning parents give to the h o s p i t a l i z a t i o n of t h e i r c h r o n i c a l l y i l l c h i l d and the ways they explain t h e i r experience. Of p a r t i c u l a r concern were: the ways i n which parents cope with h o s p i t a l i z a t i o n , t h e i r perceptions of the impact h o s p i t a l i z a t i o n has on day-to-day l i f e and the i l l n e s s problems which attend t h e i r c h i l d ' s chronic i l l n e s s , and the themes which contribute to the formu-l a t i o n of a framework which describes the parents' experiences. The purposes 7 of the study w i l l be addressed i n the following section. Purposes This study i s an exploration of the experience of h o s p i t a l i z a -t i o n as perceived by parents of c h r o n i c a l l y i l l c h i l d r e n f o r the purposes of: 1. c l a r i f y i n g the meaning of h o s p i t a l i z a t i o n within the context of chronic i l l n e s s ; 2. gaining i n s i g h t into the chronic i l l n e s s experience i n fam i l i e s having a c h i l d with chronic disease; and, 3. determining interventions which may enhance the incidents of h o s p i t a l i z a t i o n . I t may be impossible for health professionals to have an impact on the course of the c h i l d ' s chronic disease, but :the long-term i l l n e s s with i t s attendant psychosocial d i f f i c u l t i e s i n day-to-day l i v i n g presents many opportunities to exert a p o s i t i v e influence on parents' experiences. An improved understanding of h o s p i t a l i z a t i o n as a facet of chronic i l l n e s s w i l l provide sound r a t i o n a l e f o r e s t a b l i s h i n g appropriate and timely nursing interventions. These interventions have the p o t e n t i a l to have an impact on both the incident of h o s p i t a l i z a t i o n and the i l l n e s s as perceived by the parents. The following four sections, which include an introduction to the methodology, d e f i n i t i o n s of terms, assumptions and l i m i t a t i o n s make e x p l i c i t the important parameters of the study. Introduction to the Methodology The perspective which guided t h i s study was derived from the 8 interpretive school of research and incorporated aspects of both the phenomenological and grounded theory approaches. In-depth interviewing was used for data c o l l e c t i o n and a semi-structured schedule of questions provided direction for the interviews (Refer to Appendix A). Theoretical and Methodological Perspectives The interpretive approach i s both a theory and a methodology. Theoretically i t rests on the premise that everyday experience i s valuable and amenable to systematic exploration (Oiler, 1982; Swanson & Chenitz, 1982). As a theory, the interpretive perspective i s conceptually congruent with Kleinman's explanatory models (1978) i n "that both hold the view that humans give meaning to the r e a l i t y they experience and the meaning i s socio-c u l t u r a l l y located. Methodologically this allows the researcher to explore the personal r e a l i t y of the subjects while actively p a r t i c i p a t i n g i n the process of data construction (Pearsall, 1965). Within this framework, research i s recognized as a s o c i a l act (Davis, 1978). Just as there are many ways of interpreting events, there are many ways of exploring phenomena (Rist, 1979). Not a l l aspects of our world are amenable to quantification.. In other words, simply v e r i f y i n g the existence of behaviour and assuming the researcher's interpretation of meaning i s congruent with that of the participants may not be appropriate. Qualitative methods are not prone to reductionism. This means they are able to accommodate the wide variety of perspectives which arise when exploring multidimensional phenomena (Kleinman, 1977). I l l n e s s i s such a phenomenon. The interpretive school arose from a philosophical need to understand the d i v e r s i t y and complexity of people i n a "human" way. An 9 assumption governing t h i s approach i s that people c o g n i t i v e l y order t h e i r universe (Leininger, 1978). This allows them to give meaning to the r e a l i t y they experience which influences i n t e r p r e t a t i o n and guides behaviour. Many research questions necessitate an approach which emphasizes in-depth "understanding of human behaviour from the actor's own frame of reference" (Rist, 1979, p.19). This study addresses such a question. There are two a d d i t i o n a l factors which support the use of q u a l i t a t i v e methodology f o r t h i s study. The f i r s t r e l a t e s to the nature of c l i n i c a l nursing and i t s associated s k i l l s . As Davis (1978) states, there i s a good conceptual f i t between phenomenology and c l i n i c a l nursing, which i s the focus of th i s study. Secondly, the method allows "a fresh perspective i n a f a m i l i a r s i t u a t i o n " (Stern, 1980, p.20). H o s p i t a l i z a -t i o n of a c h r o n i c a l l y i l l c h i l d i s a f a m i l i a r s i t u a t i o n f o r health professionals which they tend to view s o l e l y from the biomedical frame-work. A fresh perspective from the parents' point of view seems warranted. I t i s apparent that the c l i n i c a l approach to i l l n e s s , dominated by a medical perspective, i s inadequate to explain the human experience of i l l n e s s . In the past, health professionals have tended to assume that t h e i r view of r e a l i t y was the same as that held by the c l i e n t . As a r e s u l t , research regarding i l l n e s s has focused on the medical perspective and has been approached using quantitative methods. However, as Ri s t (1979) points out, both quantitative and q u a l i t a t i v e methods are valuable i n that they accentuate d i f f e r e n t aspects of r e a l i t y . We are coming to understand that the medical view of disease i s not necessar i l y congruent with the c l i e n t ' s view of i l l n e s s (Kleinman, 1977; Kleinman, et a l . , 1978). 10 Discrepancies between expectations held by health professionals and c l i e n t s have resulted i n d i s s a t i s f a c t i o n with care. The differences i n perception have caused "serious d i f f i c u l t i e s not only i n communicating with patients but i n e s t a b l i s h i n g therapeutic r e l a t i o n s h i p s with them" (Leininger, 1978, p.76). Only through maximal understanding of human behaviours i n context ( P e a r s a l l , 1965, p.42) can interventions be ap-propriate and timely. Within the i n t e r p r e t i v e o r i e n t a t i o n , the p a r t i c i p a n t i s con-sidered an expert as s/he r e l a t e s her/his own conception of r e a l i t y ' ( P e a r s a l l , 1965). Therefore, only a small number of informants may be required and they are selected according to p a r t i c u l a r c r i t e r i a which v a l -idate them as experts with regard to the research question (Evaneshko & Kay, 1982) . The researcher a c t i v e l y p a r t i c i p a t e s i n data construction by supply-ing an i n t e r p r e t i v e schema or conceptual framework for making general sense of the information (Cicourel, 1976). V a l i d a t i o n of the researcher's under-standing of p a r t i c i p a n t s ' explanations i s c r i t i c a l as theory i s developed from "grounded experiences," that i s , experiences which are shared and understood between the researcher and p a r t i c i p a n t s ( R i s t , 1979). " A l l knowledge i s s o c i a l l y constructed. No information e x i s t s outside that produced by i n d i v i d u a l s within t h e i r s o c i a l and c u l t u r a l context" (Rist, 1979, p.17). Two s i g n i f i c a n t implications of t h i s s t a t e -ment are that the i l l n e s s experience i s c u l t u r a l l y constructed (Kleinman, 1978) and that research i s a s o c i a l l y ordered phenomenon (Cicourel, 1976; Davis, 1978). The i n t e r p r e t i v e approach "does not eliminate bias but, rather, attempts to recognize and incorporate i t " (Davis, 1978, p.187) by acknowledging the researcher's r o l e i n constructing and i n t e r p r e t i n g the experience she shares with p a r t i c i p a n t s (Glaser & Strauss, 1965; 11 R i s t , 1979). To conclude, the i n t e r p r e t i v e approach was chosen as i t enabled the researcher to construct datat that i s r e f l e c t i v e of the world of nursing p r a c t i c e (Swanson & Chenitz, 1982). This methodology involves a process which encompasses the e n t i r e s c i e n t i f i c act, not j u s t the portion represented by data c o l l e c t i o n (Swanson & Chenitz, 1982). The s p e c i f i c s of the process as r e l a t e d to t h i s study w i l l be discussed i n Chapter 3 on methodology. D e f i n i t i o n s of Terms Terms which may be subject to ambiguous i n t e r p r e t a t i o n s have been defined below i n order to c l a r i f y t h e i r use i n t h i s study. 1. C h i l d : male or female from infancy to seventeen years o l d . 2. Chronic disease: "a disorder with a protracted course which can be progressive and f a t a l , or associated with a r e l a t i v e l y normal l i f e span despite impaired p h y s i c a l or mental functioning" (Mattsson, 1972, p.801). 3. Coping: the way i n which new s i t u a t i o n s or problems are managed. 4. Disease: "malfunctioning or maladaption of b i o l o g i c and psycho-physiologic process i n the i n d i v i d u a l " (Kleinman et a l . , 1978, p.252). 5. Explanatory models: " a l l attempts to understand i l l n e s s and treatment" (Kleinman, 1978, p.421). They are s o c i o c u l t u r a l l y constructed accounts of r e a l i t y which serve to order i l l n e s s v i a l a b e l l i n g , c l a s s i f y i n g and explaining. 6. I l l n e s s : "personal, interpersonal, and c u l t u r a l reactions to disease or discomfort" (Kleinman et a l . , 1978, p.252). 7. I l l n e s s problems: "the d i f f i c u l t i e s i n l i v i n g r e s u l t i n g from 12 sickness" (Kleinman et a l . , 1978, p.252). 8. Parent: adult who i s responsible for the day-to-day caring and management of l i f e f o r the c h r o n i c a l l y i l l c h i l d . 9. Trajectory of chronic i l l n e s s : the path that depicts the i l l n e s s experience which i s characterized by long-term duration and shape (Strauss, 1979, p.107). By shape i t i s meant that the path i s not simply a s t r a i g h t l i n e but has highs, lows, and turning points which r e f l e c t the changing i l l n e s s experience. 10. Verbatim accounts: word-for-word segments of the taped i n t e r -views with parents which give access to the data on which i n t e r p r e t a t i o n s are based. In t h i s report, F indicates father, I indicates interviewer and M indicates mother. Where appropriate, the c h i l d r e n have been given f i c t i t i o u s names. Assumptions The assumptions that guided the study are as follows: 1. Parents are able to i d e n t i f y and are w i l l i n g to a r t i c u l a t e the r o l e h o s p i t a l i z a t i o n plays i n the chronic i l l n e s s experience. 2. Parents are able to i d e n t i f y and are w i l l i n g to a r t i c u l a t e t h e i r s t r a t e g i e s for managing chronic childhood i l l n e s s and i n p a r t i c u l a r the experience of h o s p i t a l i z a t i o n . 3. In that parents are t a l k i n g about themselves, we must assume that the information they give i s v a l i d and r e l i a b l e ( P e a r s a l l , 1965). 4. The researcher exerts an influence on the data by a c t i v e l y p a r t i c i p a t i n g i n data construction (Glaser & Strauss, 1965). 13 .-. Limitations The l i m i t a t i o n s of the study are as follows: 1. Parents' expression of perceptions may have been influenced by concern over possible repercussions regarding t h e i r c h i l d ' s care. 2. G e n e r a l i z a b i l i t y of findings are l i m i t e d to the c u l t u r a l and s o c i a l groups represented i n the study sample. I t must be remembered that the r e a l i t y constructed within the research encounter i s s t r i c t l y that of the p a r t i c i p a n t s and i s c u l t u r a l l y and s o c i a l l y located. Summary This chapter has introduced the study, located i t within a nursing context and generally defined i t s parameters. I t i s apparent that when chronic childhood i l l n e s s i s managed within the p r o f e s s i o n a l medical sector, care involves the negotiation between d i f f e r i n g explanatory models held by parents and health professionals (Kleinman, 1977, 1978). Kleinman (1977, 1978) has proposed that e l i c i t i n g c l i e n t s ' explanatory models enhances health p r o f e s s i o n a l s ' understanding of i l l n e s s as a personal, s o c i a l and c u l t u r a l experience and f a c i l i t a t e s the p r o v i s i o n of care that i s mutually s a t i s f y i n g . This study has been designed to explore parents' perceptions of t h e i r experience with the h o s p i t a l i z a t i o n of a c h r o n i c a l l y i l l c h i l d i n order to enhance understanding of t h e i r explanatory models for chronic childhood i l l n e s s . The following chapter discusses the l i t e r a t u r e r e l a t e d to i l l n e s s , chronic i l l n e s s i n c h i l d r e n , and h o s p i t a l i z a t i o n which provided the background for the study. Chapter 2 REVIEW OF SELECTED LITERATURE In examining the health l i t e r a t u r e , three areas appear p a r t i c u -l a r l y relevant to the problem statement. The general or foundation concern i s one of i l l n e s s as a human experience. The second area r e l a t e s more s p e c i f i c a l l y to chronic i l l n e s s i n c h i l d r e n as a family experience. T h i r d -l y , and d i r e c t l y r e l a t e d to the issue i n question, i s h o s p i t a l i z a t i o n of a c h r o n i c a l l y i l l c h i l d as a s i g n i f i c a n t occurrence i n the i l l n e s s experience. These areas w i l l provide the framework for the s e l e c t i o n and review of supporting l i t e r a t u r e . As much has been written about chronic childhood i l l n e s s that i s not research based, the purpose of t h i s review i s to present an over-view of what seems to be generally accepted with regard to i l l n e s s , chronic childhood i l l n e s s and h o s p i t a l i z a t i o n . The r o l e of the l i t e r a t u r e i s to place t h i s study i n the context of work done by other authors. This i s consistent with the conceptual framework and the i n t e r p r e t i v e methodo-l o g i c a l perspective which directed the author to enter the research encounter with an open mind and to be guided i n data c o l l e c t i o n by the p a r t i c i p a n t s ' viewpoints. A more rigorous treatment of re l a t e d research studies w i l l be presented i n Chapter 5 where the findings of t h i s study w i l l be discussed i n r e l a t i o n to the findings of other researchers. The I l l n e s s Experience I l l n e s s i s a s o c i a l l y and c u l t u r a l l y located phenomenon which, according to Kleinman (1977, 1978), i s l a b e l l e d c l a s s i f i e d , explained, -14-15 and c o n t r o l l e d within the health care system. The explanatory models used by the p l u r a l medical forms which comprise Western Society's Health Care System are founded on d i f f e r i n g h i e r a r c h i e s of health values and b e l i e f s which means that health professionals and t h e i r c l i e n t s may have d i s c r e -pant viewpoints with regard to " c l i n i c a l r e a l i t y " (Kleinman, 1977, 1978; Kleinman et a l . , 1978). C l i e n t s understand and explain i l l n e s s i n terms of t h e i r "experiences of disvalued changes i h states of being and i n s o c i a l function" (Kleinman et a l . , 1978, p.251); whereas, the explanatory models held by health professionals attend to disease, that i s , bio-psychophysio-l o g i c a l malfunction. As such, c l i e n t s are primarily concerned with the day-to-day problems of l i v i n g which a r i s e i n the i l l n e s s experience and seek professional assistance with managing these d i f f i c u l t i e s as only one option i n the choice of a v a i l a b l e treatments (Kleinman, 1977). Kleinman et a l . (1978) state that health professionals' concern with constructing objective, s c i e n t i f i c accounts of i l l n e s s has led them to focus on care that r e s u l t s i n a " t e c h n i c a l f i x " but which often ignores the meaning c l i e n t s give to t h e i r i l l n e s s experiences. The ramifications may be d i s s a t i s f a c t i o n with care and lack of therapeutic success. Several implications are evident with regard to the needs of i n d i v i d u a l s i n relation::to i l l n e s s . Kleinman et a l . (1978) a r t i c u l a t e that the same o b j e c t i v e l y v e r i f i a b l e bio-psycho-physiological symptoms may be s u b j e c t i v e l y experienced i n very d i f f e r e n t ways by d i f f e r e n t i n d i v i d u a l s . This i s supported by Hodgson's work (1980) with d i a b e t i c adolescents. Lipowski (1970) points out that how one copes with i l l n e s s depends on f a c t -ors inherent i n the i n d i v i d u a l , the disease and the environment. This author suggests that the intrapersonal factors "contribute to the subjective 16 meaning which every i l l n e s s has for the i n d i v i d u a l and t h i s i n turn helps determine coping s t r a t e g i e s " (p.94). Thus i t appears that simple treatment of symptoms may i n f a c t misinterpret or f a i l to address the concerns which prompted health seeking behavior. Kleinman et ali."'.(1978) make the point that disease can be treated but i t may not have any e f f e c t on the i l l n e s s . In f a c t , medical management may not have an impact on the disease when the i l l n e s s i s not considered. This i s due i n part to c l i e n t noncompliance when incongruent views of i l l -ness are operating and leads to nurse/physician d i s s a t i s f a c t i o n . These th e o r i s t s conclude that e f f e c t i v e c l i n i c a l p r a c t i c e must incorporate an understanding of the complex, m u l t i f a c t o r i a l nature of i l l n e s s . Many authors acknowledge that when a c h i l d i s i l l i t i s a family a f f a i r (Friedman, 1981; H i l l , 1978; Marlow, 1977; Whaley & Wong, 1979). This i s consistent with Kleinman's (1977^ 1978) view that i l l n e s s i n the personal domain i s s o c i o c u l t u r a l l y constructed within the family. Whaley and Wong (1979) describe family reaction to an i l l c h i l d t h i s way: Because a family i s a system of interdependent parts, a change i n any one member of the system causes a corresponding change i n every other member. Schematically the family system can be viewed as a set of gears of cogwheels; movementr.in any one gear causes a re-c i p r o c a l movement i n every other gear....When i l l n e s s occurs, the c h i l d often becomes the p r i n c i p a l d i r e c t i n g force and, as such, causes major responses i n each of the other family members (p.900). The p e d i a t r i c l i t e r a t u r e d i r e c t s health professionals to provide family-centered care, which requires that each family member be designated as " c l i e n t " (Marlow, 1977; Newton, 1974; Whaley & Wong,..1979). It i s the parents who most frequently transact with health professionals regarding the i l l c h i l d ' s care and so share the r o l e of c l i e n t i n the p r o f e s s i o n a l domain. This indicates the need for health professionals and parents to 17 e s t a b l i s h a common ground of understanding from which optimal care can be negotiated. According to Kleinman et a l . (1978) t h i s involves exploring the b e l i e f s , meanings and in t e r p r e t a t i o n s that govern i n d i v i d u a l s ' health behaviours. I n s i g h t f u l understanding i s p a r t i c u l a r l y important to f a m i l i e s dealing with the long-term d i f f i c u l t i e s posed by chronic childhood i l l n e s As previously stated, improved medical technology i s r e s u l t i n g i n a chang i n the nature of disease such that chronic i l l n e s s i s becoming a focus of attention (Lalonde, 1974; Tonkin, 1981). Some authors suggest that our d i f f i c u l t i e s coping with chronic i l l n e s s stem from d i r e c t i n g attention and support to s p e c i f i c categories of disease. As such, "chronic i l l n e s s i t s e l f as a major and general health issue.?is only dimly understood, i f at a l l V (Fagerhaugh, Strauss, Suczek & Wiener, 1980, p.669). Therefore, the l i t e r a t u r e r e l a t e d to chronic childhood i l l n e s s w i l l be discussed i n terms of health issues rather than s p e c i f i c diseases. Chronic. Childhood I l l n e s s I l l n e s s may take the form of acute episodes or i t may be of long-term duration. Every i l l n e s s has a t r a j e c t o r y which depicts the experience. Strauss (1979) states that c h r o n i c i t y implies a t r a j e c t o r y which has long-term duration as we l l as shape. According to Kleinman et a l . (1978) t h i s t r a j e c t o r y i s not necessar i l y congruent with the course of the accompanying disease and i s frequently unpredictable. I t i s s i g n i f i c a n t to note that the experience of i l l n e s s , l i k e any s o c i a l l y ordered phenomenon, can be alte r e d and that t h i s may be independent of change i n the associated disease. 18 Kleinman et al.(1978) point out that chronic disease i s often incurable. Thus i t becomes imperative to s h i f t the focus from the medical perspective of curing disease to one of healing i l l n e s s . Lalonde (1974) supports t h i s view i n h i s statement that " r a i s i n g 'care'' t o v l e v e l v o f c u r e ' i n the value system of the health care organization i s of c r i t i c a l importance i f resources are to be marshalled on behalf of the c h r o n i c a l l y i l l , who constitute a large and growing part of our population" (p.60). Further, Kleinman et a l . (1978) state that management of chronic i l l n e s s , l i k e most episodic acute i l l n e s s e s , occurs p r i m a r i l y i n the home which means that health professionals are presented with few opportunities to exert a p o s i t i v e influence on the i l l n e s s experience. For patients, i l l n e s s problems - the d i f f i c u l t i e s i n l i v i n g r e s u l t i n g from a sickness - are usually viewed as c o n s t i t u t i n g the e n t i r e disorder. Conversely, doctors often disregard i l l n e s s problems because they look upon the disease as the disorder. Both views are i n s u f f i c i e n t (Kleinman et al.,, 1978, p.252). The authors conclude that only when d a i l y d i f f i c u l t i e s a r i s i n g from the i l l n e s s are taken into account w i l l optimal r e s u l t s from medical management and treatment regimens occur. Chronic childhood i l l n e s s has become a r e l a t i v e l y recent topic of i n t e r e s t i n the health l i t e r a t u r e (Burton, 1975; Canam, 1980; Creer & C h r i s t i a n , 1976; Crosby, 1977; Hewitt, Newson & Newson, 1970; Kaplan & Mearig, 1977; Kikuchi, 1977; King, 1981; K r u l i k , 1980; Kupst, Dresser, Schulman & Milton, 1976; Mattsson, 1972; McCollum & Gibson, 1970; Rosenstein, 1970; Schulman 1976). Many authors agree that the presence of chronic i l l n e s s i n c h i l d r e n i s s t r e s s f u l for the family (Burton, 1975; Canam, 1980; Creer & C h r i s t i a n , 1976; Gayton, Friedman, Tavornina & Tucker, 1977; Schulman, 1976). As such, most of the l i t e r a t u r e focuses on stress o r s , coping and e f f e c t s on the family 19 Several authors discuss the s p e c i a l demands which are made on fam i l i e s of c h r o n i c a l l y i l l c h i l d r e n (Burton, 1975; Calhoun, Selby & King, 1976; Chan & L e f f , 1982; Creer & C h r i s t i a n , 1976; Hewitt et a l . , 1970; McCollum, 1975; Rosenstein, 1970). The discussions emphasize that each family experiences demands which vary over time and often r e s u l t i n d r a s t i c a l l y a l t e r e d family l i f e s t y l e s as w e l l as compromised family functioning. K r u l i k (1980) states that parenting i n these circumstances requires much thought and ingenuity as there i s l i t t l e preparation f o r coping with the multiple unpredictable problems of l i v i n g associated with chronic childhood i l l n e s s . Some th e o r i s t s have found that d i f f i c u l t i e s center on extensive treatment regimens (McCollum & Gibson, 1970; Rosenstein, 1970; Strauss, 1979). These may be so demanding that they pose greater problems f or the family than do the symptoms of i l l n e s s . One of the major i l l n e s s problems f or c h r o n i c a l l y s i c k c h i l d r e n that has been i d e n t i f i e d i n the l i t e r a t u r e i s the f e e l i n g of "being different" (Canam, 1980; Crosby, 1977; K r u l i k , 1980; McCollum & Gibson, 1970). Strauss (1979) states: The chief business of a c h r o n i c a l l y i l l person i s not ju s t to stay a l i v e or to keep h i s symptoms under c o n t r o l , but to l i v e as normally as possible despite h i s symptoms and h i s disease. In the case of c h r o n i c a l l y i l l c h i l d r e n , parents work very hard at creating some semblance of a normal l i f e f o r t h e i r o f f s p r i n g (p.110). The sense of "being d i f f e r e n t " i s often exacerbated by the demands of medically constructed treatment regimens. As a r e s u l t , patients and kinsmen i n e v i t a b l y enter into negotiations with each other, and sometimes with physicians, over relaxing or otherwise changing... the regimen. They are negotiating not only over such matters as the elimination of discomfort and s i d e - e f f e c t s , but also the p o s s i b i l i t y of making the management of ordinary l i f e easier or even possible (p.102). 20 Normalization i s a p r i o r i t y for parents and health professionals; however, founded on d i f f e r i n g perspective of i l l n e s s , the meaning of normalization may d i f f e r . For example, Anderson (1981) found that parents of i l l c h i l d r e n set aside considerations of disease when constructing a semantic d e f i n i t i o n of normal that was appropriate to t h e i r circumstances. Whereas, Hewitt et a l . (1970) found that physicians recommended t r e a t i n g the c h i l d "as normal" regardless of the constraints imposed by i l l n e s s . These findings support the importance of considering discrepancies i n expectations, p r i o r i t i e s , and value systems when care i s negotiated. The l i t e r a t u r e i ndicates that management of chronic childhood i l l n e s s l i e s p r i m a r i l y with the parents and that i t i s a s t r e s s f u l task. However, l i t t l e i s written about the meaning of the i l l n e s s experience for the parents and how the stress i s interpreted. Appley and Trumbull (1967) state that attention must be given to the r o l e of the " s o c i a l and c u l t u r a l m i l i e u i n producing or reducing s t r e s s " (p.11). This i s supported by studies l i n k i n g family reactions to a c h i l d having chronic i l l n e s s with s o c i a l and c u l t u r a l factors acting i n the s i t u a t i o n (Calhoun et a l . , 1976; Ferguson & Webb, 1979). Feder (1978) argues that we cannot begin to understand what the c h i l d ' s d e f i c i t means to him unless we understand the values and b e l i e f s of the parents, while several other t h e o r i s t s have concluded that the c h i l d ' s adjustment i s d i r e c t l y r e l a t e d to parental adjustment (Canam, 1980; Mattsson, 1972; S u l l i v a n & Selvaggio, 1979). Friedman (1981) states that: the coping mechanisms used by. the adult family members may be taken as representative of those used within sets of family r e l a t i o n s h i p s or the family as a whole, i f we assume that parents set the tone for how the family as a whole would respond (p.248). 21 Several studies have illuminated the pervasive, disrupting influence of chronic childhood i l l n e s s on family l i f e (Burton, 1975; Canam, 1980; Hewitt et a l . , 1970; Sultz, Schlesinger, Mosher & Feldman, 1972; Taylor, 1981). I t may mean separation of family members, f i n a n c i a l hard-ships, a l t e r e d patterns of s o c i a l i n t e r a c t i o n , strained communication patterns, and disturbed family r e l a t i o n s h i p s . Chan and L e f f (1982) state that " i l l n e s s not only interrupts the growth and maturation of the c h i l d , but also severely disrupts the growth and maturation of h i s or her parents" (p.9). I t follows that i n order to grasp the r e a l i t y of chronic i l l n e s s one must "have regular, ongoing contact with the everyday l i v i n g and accompanying f e e l i n g s of the family" (Kaplan & Mearig, 1977, p.81). Chronic i l l n e s s i s often characterized by unpredictable events which have uncertain outcomes. This may r e s u l t i n the c h i l d being perceived as "at r i s k " even when s/he f e e l s w e l l which Kasl (1975) states i s a result of knowing that r i s k factors are present. Levy's (1980) study found that: Some parents looked upon a p a r t i c u l a r c h i l d as d i f f e r e n t from other c h i l d r e n . . . i n that he or she i s l i k e l y to become very s i c k very f a s t , even though they recognized that the present i l l n e s s was not severe (p.956). The author termed these c h i l d r e n , "vulnerable c h i l d r e n . " I t i s i n t e r e s t i n g to note that a large proportion of the vulnerable c h i l d r e n had h i s t o r i e s of chronic i l l n e s s . The concepts of "at r i s k status" and "vulnerable c h i l d r e n " may help to explain the statementszof other writers that the c h i l d a f f e c t e d by chronic i l l n e s s i s frequently deprived of normal l i f e experiences which may r e s u l t i n regression and a precarious balance between dependency and independency (Haraguchi, 1978; Rodriguez, 1970; Rosenstein, 1970). 22 Many t h e o r i s t s view the adjustment to chronic i l l n e s s as a long-term proposition, i n that new d i f f i c u l t i e s a r i s e at d i f f e r e n t developmental stages for both the c h i l d and the family (Feder, 1978; Mattsson, 1972; McCollum & Gibson, 1970). Calhoun et a l . (1976) state that, as a result, the parents' r e d e f i n i t i o n of the c h i l d i s an ongoing process which requires constant decision making. Several authors argue that c h r o n i c i t y i s a more important factor to adjustment than the s p e c i f i c c l i n i c a l a t t r i b u t e s of the condition (Mattsson, 1972; Pless & Douglas, 1971). This supports the importance of exploring the chronic i l l n e s s experience rather than s p e c i f i c c l i n i c a l conditions. Canam (1980) has concluded that, f o r health professionals to be h e l p f u l to fa m i l i e s with c h r o n i c a l l y i l l c h i l d r e n , they need to l i s t e n to the fa m i l i e s i n order to discover what meaning the i l l n e s s experience has for them. In t h i s way the uniqueness of each family's experience can be combined with the commonalities which most fa m i l i e s share, so that appropriate and timely services can be offered to every family (p.86). H o s p i t a l i z a t i o n of a c h r o n i c a l l y i l l c h i l d brings f a m i l i e s who usually manage i l l n e s s problems within the home into contact with the pro f e s s i o n a l medical system. As such, i t o f f e r s health professionals a valuable opportunity to l i s t e n to parents at a s i g n i f i c a n t point i n the chronic i l l n e s s experience. H o s p i t a l i z a t i o n i s also a time when the merits of services offered to these f a m i l i e s may be assessed. The l i t e r a t u r e r e l a t e d to h o s p i t a l i z a t i o n w i l l be b r i e f l y reviewed i n the following section as a s p e c i f i c stepping stone toward increased.understanding of the chronic i l l n e s s experience. H o s p i t a l i z a t i o n of a Chronically 111 C h i l d H o s p i t a l i z a t i o n i s c i t e d as a frequent, s t r e s s f u l occurrence i n the chronic i l l n e s s experience* (Burton, 1975; Hayes Morris et a l . , 1982; 23 Mattsson, 1972; McCollum, 1975). The important factor i s the frequency with which h o s p i t a l i z a t i o n occurs. In that i t i s a s i g n i f i c a n t facet of many long-term i l l n e s s experiences, h o s p i t a l i z a t i o n cannot be over-looked when one i s examining c h r o n i c i t y . The chronic i l l n e s s experience changes over time as c r i t i c a l issues a r i s e with d i f f e r e n t developmental stages of the c h i l d and the family. As a facet of the i l l n e s s experience, one wonders i f the meaning of h o s p i t a l i z a t i o n a l t e r s i n conjunction with the i l l n e s s t r a j e c t o r y . A poverty of theory contributes l i t t l e to health professionals' under-standing of h o s p i t a l i z a t i o n within the context of a c h i l d ' s chronic i l l n e s s . However, work such as that done by Hayes Morris et a l . (1982) i s beginning to e s t a b l i s h a t h e o r e t i c a l basis for nursing f a m i l i e s having c h r o n i c a l l y i l l c h i l d r e n . Green (1982) and Rosenstein (1970) argue that optimal care must be family focused. However, at present, our interventions rest on an understanding of how h o s p i t a l i z a t i o n a f f e c t s c h i l d r e n when they are admit-ted during acute episodic i l l n e s s e s (Brain & Maclay, 1968; H i l l , 1978; MacCarthy, Lindsay & Morris, 1962; Prugh, Staub, Sands, Kirschbaum & Lenihan, 1953; Vaughan, 1957). Kleinman et a l . (1978) have discussed the importance of negotiating care based on an understanding of the perspec-t i v e s held by the people involved. This indicates the need to explore the parents' perceptions of h o s p i t a l i z a t i o n when the context i s chronic i l l n e s s , and i s substantiated by Anderson's (1981) study which found that the h o s p i t a l i z a t i o n of a c h r o n i c a l l y i l l c h i l d i s perceived as d i f f e r e n t than "normal" h o s p i t a l i z a t i o n . One of the conclusions which the author made was that i t i s important for p r a c t i t i o n e r s to take the 24 family's unique s i t u a t i o n i n t o account. Pless and Douglas (1971) state that repeated h o s p i t a l i z a t i o n s are l i k e l y to a f f e c t the s o c i a l and psychological development of chroni-c a l l y i l l c h i l d r e n which i s supported by Kagan and Levi's (1974) work. These authors c l a s s i f y a c h i l d ' s admission to h o s p i t a l as a psychosocial stressor. McCollum (1975) argues that i n addition to everyday i l l n e s s problems, c h r o n i c a l l y i l l c h i l d r e n face a host of u n c e r t a i n t i e s during periods of admission to h o s p i t a l . One can conclude that because of the nature of the i l l n e s s experience, appropriate intervention has the pot-e n t i a l of having an impact on the s i t u a t i o n a l concerns of present and future h o s p i t a l i z a t i o n s as w e l l as long-term implications for negotiating solutions to everyday i l l n e s s problems. Summary The l i t e r a t u r e indicates that when a c h i l d i s i l l , each family member i s affected and attempts to understand the i l l n e s s by constructing e x p e r i e n t i a l l y based explanatory models. These models explain the i l l n e s s i n terms of the day-to-day problems of l i v i n g that are associated with the experience. Families of c h r o n i c a l l y i l l c h i l d r e n have a long-term i l l n e s s experience which involves multiple, complex i l l n e s s problems that vary over time. As a r e s u l t , family l i f e i s often s i g n i f i c a n t l y a l t e r e d and family functioning may be compromised. P e d i a t r i c p r a c t i t i o n e r s are directed to view the parents and the i l l c h i l d as c l i e n t s i n r e l a t i o n to care d e l i v e r y . Several authors argue that i n order to provide optimal care, health professionals must have a clear understanding of the meaning attached to the i l l n e s s . At no time i s t h i s more important than during the c h i l d ' s admission to h o s p i t a l , a frequently recurring facet of the chronic i l l n e s s experience. However, l i t t l e has been written about h o s p i t a l i z a t i o n when i t occurs i n the context of chronic childhood i l l n e s s . As such, there i s l i t t l e information to support an understanding of the parents' needs with regard to care. Further investigation regarding the parents' perspectives i s warranted. This study has been designed to address the parents' perspec-tives and has been guided, i n terms of methodology, by the interpretive school of research. The methodology was introduced i n Chapter 1 and now w i l l be discussed as i t was used i n this study. Chapter 3 METHODOLOGY The t h e o r e t i c a l and methodological perspective which guided the study was derived from the i n t e r p r e t i v e school and incorporated aspects of the phenomenological and grounded theory approaches. This chapter w i l l describe how the perspective was adapted for use i n the study. The areas to be addressed are s e l e c t i o n of p a r t i c i p a n t s , data c o l l e c t i o n , and data a n a l y s i s . Selection of P a r t i c i p a n t s The p a r t i c i p a n t s were selected by v i r t u e of t h e i r status as expert witnesses regarding the chronic i l l n e s s experience. This i s because unlike most survey research, i t i s not assumed that a l l answers are equally v a l i d and valuable or that i t i s best to s e l e c t respondents randomly. Instead, the s e l e c t i o n favors persons who are e s p e c i a l l y knowledgeable with regard to various a c t i v i t i e s and bodies of knowledge ( P e a r s a l l , 1965, p.40). C r i t e r i a f o r S e l e c t i o n The c r i t e r i a f o r s e l e c t i n g the parents who p a r t i c i p a t e d i n the study included: - that each family have a c h r o n i c a l l y i l l c h i l d between the ages of one month and 17 years who was usually cared for i n the home; - that the c h i l d be h o s p i t a l i z e d , but as c h r o n i c i t y was the s a l i e n t contextual f a c t o r , t h i s was not to be a f i r s t admission and the c h i l d was not to be terminally i l l ; - that at l e a s t one parent be accessible for interviews during the period of the study; and, -26-27 - that the parents be able to converse i n English regardless of ethnic background. As the study progressed and the interviews with the i n i t i a l p a r t i c i p a n t s were analysed a concern arose that one aspect of the chronic i l l n e s s experience might influence the parents' accounts. The f i r s t three p a r t i c i p a n t s did not l i v e i n the greater Vancouver area which meant they had t r a v e l l e d some distance to bring t h e i r c h i l d r e n to h o s p i t a l and entailed separation of the nuclear family. The researcher questioned whether separa-t i o n of family members might a f f e c t the parents' experiences i n h o s p i t a l . Thus, one further c r i t e r i o n was added f or the s e l e c t i o n of the l a s t three sets of parents: - that the family reside i n the Greater Vancouver area. This also addressed the concern that the i n i t i a l s e l e c t i o n of parents precluded p a r t i c i p a t i o n by the fathers. S e l e c t i o n Procedure Families were selected from two Vancouver h o s p i t a l s . Through telephone contact with several head nurses from previously i d e n t i f i e d wards and a s o c i a l worker, parents who met the study's c r i t e r i a were i d e n t i f i e d . One of the hos p i t a l s required that the researcher obtain the admitting physician's consent to approach the parents regarding the study. Therefore, when th i s applied, written permission was secured from the physician by the head nurse or the researcher. Some of the f a m i l i e s were introduced to the study and/or the researcher by the attending physician or the head nurse. In other instances the researcher made the i n i t i a l contact independently. A complete verbal explanation of the study was given to the parents by the researcher i n face to face contact. In 28 a d d i t i o n , a w r i t t e n e x p l a nation was presented when the parents gave t h e i r w r i t t e n consent to p a r t i c i p a t e (Appendix B) . When both parents i n ":a f a m i l y p a r t i c i p a t e d , the study was explained to both but the signature of one parent was deemed adequate consent. C h a r a c t e r i s t i c s of the P a r t i c i p a n t s S i x mothers and three f a t h e r s from s i x f a m i l i e s having chroni - r c a l l y i l l c h i l d r e n p a r t i c i p a t e d i n the study. Three f a m i l i e s r e s i d e d i n the Greater Vancouver area w h i l e the other three l i v e d i n smaller B r i t i s h Columbia centers some di s t a n c e from the h o s p i t a l s i n v o l v e d . The f a m i l i e s r e s i d i n g outside the Greater Vancouver area d i d have medical contacts i n t h e i r home community and the c h i l d r e n were o c c a s i o n a l l y h o s p i t a l i z e d there when acute problems, such as pneumonia, arose. However, these f a m i l i e s t r a v e l l e d to Vancouver on a r e g u l a r b a s i s to consult w i t h s p e c i a l i s t s r e -garding the management of ongoing i l l n e s s problems. The parents who agreed to p a r t i c i p a t e t y p i c a l l y functioned as primary p r a c t i t i o n e r s i n that they managed t h e i r c h i l d r e n ' s i l l n e s s e s on a day-to-day b a s i s i n the home. For s e v e r a l of the parents t h i s e n t a i l e d p r o v i d i n g t o t a l care. In a l l cases, the parents, i n c o n s u l t a t i o n w i t h h e a l t h p r o f e s s i o n a l s , made the d e c i s i o n to have t h e i r c h i l d admitted to h o s p i t a l . For two of the f a m i l i e s , h o s p i t a l i z a t i o n was unexpected; whereas, the other four had a n t i c i p a t e d and planned the ^ c h i l d r e n ' s admissions. The h o s p i t a l i z a t i o n was understood by both the parents and the researcher to be a temporary i n c i d e n t i n the chronic i l l n e s s experience. A l l of the f a m i l i e s were composed of a mother and f a t h e r , and had one u s u a l l y w e l l c h i l d i n a d d i t i o n to the i l l c h i l d ( r e n ) . Two of the f a m i l i e s had m u l t i p l e c h i l d r e n a f f e c t e d by chronic i l l n e s s due to medical 29 c o n d i t i o n s t h a t w e r e g e n e t i c i n o r i g i n . One o f t h e s e f a m i l i e s h a d o n e l i v i n g c h r o n i c a l l y i l l c h i l d w h e r e a s t h e o t h e r h a d t w o , b o t h o f whom w e r e h o s p i t a l i z e d a t t h e t i m e o f t h e s t u d y . T h i s m e a n t t h a t t h e p a r e n t s ' a c c o u n t s r e f e r t o t h e h o s p i t a l i z a t i o n o f s e v e n c h i l d r e n w h o v a r i e d i n a g e f r o m t h r e e m o n t h s t o 2 1 y e a r s . T h e o n e c h i l d who w a s o l d e r t h a n t h e p r e v i -o u s l y s t a t e d c r i t e r i o n f o r p a r t i c i p a n t s e l e c t i o n b e c a m e i n v o l v e d w i t h t h e s t u d y a s a r e s u l t o f b e i n g a d m i t t e d t o h o s p i t a l w i t h a s e v e n t e e n y e a r o l d s i b l i n g . E a c h f a m i l y w a s c o p i n g w i t h a d i f f e r e n t m e d i c a l d i a g n o s i s , h o w -e v e r , a l l w e r e c o n g e n i t a l d i s o r d e r s . T h e p a r e n t s w e r e w h i t e , E n g l i s h s p e a k i n g i n d i v i d u a l s . F o u r s e t s w e r e C a n a d i a n b o r n , o n e s e t h a d e m i g r a t e d f r o m B r i t a i n a n d o n e s e t o f p a r e n t s w e r e o f G e r m a n d e s c e n t f r o m S o u t h A m e r i c a . N o n e o f t h e m o t h e r s w e r e e m p l o y e d o u t s i d e t h e h o m e a n d s o t e n d e d t o b e t h e p r i m a r y s u p p o r t p e r s o n f o r t h e c h i l d r e n i n h o s p i t a l a s w e l l a s t h e p e r s o n m o s t r e a d i l y a v a i l a b l e f o r i n t e r -v i e w s . F i v e o f t h e f a t h e r s w e r e e m p l o y e d f u l l - t i m e i n b l u e c o l l a r j o b s w h i l e o n e f a m i l y h a d n o e m p l o y e d a d u l t m e m b e r s . L a c k o f c o n s i s t e n t p a r t i c i -p a t i o n b y f a t h e r s s e e m e d p r e d o m i n a n t l y r e l a t e d t o l i f e c i r c u m s t a n c e s . T h e s e p a r a t i o n o f f a m i l y m e m b e r s w h i c h o c c u r r e d f o r t h e t h r e e f a m i l i e s r e s i d i n g o u t s i d e t h e G r e a t e r V a n c o u v e r a r e a p r e c l u d e d p a r t i c i p a t i o n b y t h e f a t h e r s . O f t h e t h r e e f a m i l i e s r e s i d i n g i n t h e G r e a t e r V a n c o u v e r a r e a , a l l f a t h e r s t o o k p a r t . H o w e v e r , o n e f a t h e r ' s p a r t i c i p a t i o n w a s e x t r e m e l y l i m i t e d a s h e f o u n d t a l k i n g a b o u t h i s c h i l d ' s i l l n e s s v e r y d i s t r e s s i n g . B o t h p a r e n t s i n o n e f a m i l y p a r t i c i p a t e d i n e v e r y i n t e r v i e w w h i c h a p p e a r s r e l a t e d t o t h e f a c t t h a t n e i t h e r w e r e e m p l o y e d . T h i s s e c t i o n h a s d e s c r i b e d t h e s e l e c t i o n o f p a r t i c i p a n t s f o r t h e s t u d y . A s i n t r o d u c e d e a r l i e r , t h e i n t e r p r e t i v e p e r s p e c t i v e d i r e c t s t h e 30 use of constant comparative analysis which means that the processes of data c o l l e c t i o n and analysis occur simultaneously and are d i a l e c t i c i n nature. However, for the purpose of c l e a r d e s c r i p t i o n , the processes w i l l be discussed separately i n the following two sections. Data C o l l e c t i o n Procedure for Data C o l l e c t i o n The data were c o l l e c t e d through in-depth interviewing which was guided by questions adapted from Kleinman et a l . (1978) (see Appendix A). The researcher was concerned with exploring how parents understood and explained the c l i n i c a l r e a l i t y of h o s p i t a l i z a t i o n , a facet of t h e i r experi-ence with chronic i l l n e s s , f o r the purpose of promoting an enhanced understanding of t h e i r explanatory models for i l l n e s s . Kleinman et a l . (1978) suggest questions for e l i c i t i n g the c l i e n t ' s explanatory model which d i r e c t examination of the c l i e n t ' s perceptions of his/her i l l n e s s experience. These questions were adapted i n order to examine the parents' perceptions of t h e i r experience with the h o s p i t a l i z a t i o n of t h e i r chroni-c a l l y i l l c h i l d r e n and addressed the general areas of: (1) the r e l a t i o n -ship of h o s p i t a l i z a t i o n to the c h i l d ' s chronic i l l n e s s ; (2) expectations with regard to the course and outcome of h o s p i t a l i z a t i o n ; (3) personal impact of the h o s p i t a l i z a t i o n ; and (4) the r o l e of the health professionals with regard to the h o s p i t a l i z a t i o n . The questions served only to i n i t i a t e i n t e r a c t i o n with the parents and, as such, not a l l the questions were asked of a l l the parents. Once data c o l l e c t i o n began, the researcher's questions were generated i n response to the parents' explanations which enabled in-depth exploration of the p a r t i c i p a n t s ' perspectives. This w i l l be discussed further i n the following 31 section on construction of accounts and explains why only a sample of the interview questions has been provided (Appendix A). The data were constructed through 14 interviews with parents from s i x f a m i l i e s . When data c o l l e c t i o n began, the parents were t o l d that the interviews would l a s t approximately one hour but that they were not to consider t h i s a time l i m i t . A l l of the interviews were tape recorded and the parents were informed i n advance of the necessity to turn the cassette a f t e r approximately 45 minutes. This explanation seemed adequate as most of the parents continued to talk while the cassette was being turned. Most of the interviews lasted between 75 and 90 minutes although the actual contact time with the parent(s) was often s u b s t a n t i a l l y longer. Occasionally the researcher had terminated the interview and stopped the tape recorder when the parent resumed t a l k i n g about matters relevant to the study. I t was d i f f i c u l t to begin tape recording again so the researcher summarized t h i s information i n w r i t i n g a f t e r leaving the research encounter. These summaries were used as f i e l d notes i n the con-s t r u c t i o n of the a n a l y t i c framework. It was the intent of the researcher to conduct multiple interviews with each of the p a r t i c i p a n t s i n order to construct consistent accounts and v e r i f y i n t e r p r e t a t i o n s of the data. The actual number of interviews was to be governed by the parents' w i l l i n g n e s s to p a r t i c i p a t e and the nature of the data being c o l l e c t e d . However, with two p a r t i c i p a n t s , data c o l l e c t i o n was terminated a f t e r one interview due to unexpected occurrences: i n one instance, the death of the i l l c h i l d and, i n the other, unexpected complications i n the course of the c h i l d ' s treatment which made the mother unavailable for interview. For the f a m i l i e s who resided outside the Greater Vancouver area, the number of interviews was l i m i t e d p r i m a r i l y by the length of h o s p i t a l stay whereas the nature of the data was a more prominent l i m i t i n g factor f o r the p a r t i c i p a n t s l i v i n g within the area. Of the four f a m i l i e s not c i t e d : one had two interviews; two had three interviews; and, one had four. In a l l instances the mother was the i n i t i a l contact person and i n a l l but two instances, the mother was the sole p a r t i c i p a n t i n the f i r s t interview. For the f a m i l i e s r e s i d i n g i n the Greater Vancouver area, the researcher explained at the time of the f i r s t contact that both parents were i n v i t e d to p a r t i c i p a t e . When both parents chose to take part, they were interviewed together and, i n t o t a l , s i x interviews were conducted with mother and father present. The parents were not given the choice of separate interviews. The interviews were conducted both i n the hospital;and, f o r two f a m i l i e s , i n the home. A small, p r i v a t e interview room was u t i l i z e d i n the h o s p i t a l . This was an area where the parents could smoke which was impor-tant to several p a r t i c i p a n t s . The disadvantage of the arrangement was that there was only one room a v a i l a b l e which took some parents o f f the unit where t h e i r c h i l d was admitted. Two of the mothers did not wish to leave t h e i r c h i l d r e n so the interviews were conducted i n the children's rooms. This proved to be a s a t i s f a c t o r y arrangement for both f a m i l i e s as they occupied p r i v a t e rooms. The interviews were scheduled at the parents' convenience. Once tape recording of the f i r s t interview was stopped many parents expressed nervousness over being tape recorded and surprise at being able to ta l k so e a s i l y and for such a long period. However, beyond t h i s i n i t i a l uneasiness, the tape recorder was v i r t u a l l y ignored. The parents also expressed concern about the relevance of t h e i r ^ s t o r y to the 33 researcher's area of i n t e r e s t . As a r e s u l t , feedback from the researcher regarding the importance of t h e i r contribution became i n t e g r a l to the process. The r e l a t i o n s h i p which developed between the researcher and the p a r t i c i p a n t s presented a few d i f f i c u l t i e s when some fa m i l i e s were r e l u c -tant to terminate at the end of the research encounter. This i s l i k e l y a r e f l e c t i o n of the fa c t that they found i t h e l p f u l to t a l k to a health professional who was t r u l y interested i n l i s t e n i n g . The termination pro-cess was f a c i l i t a t e d by c l e a r l y e s t a b l i s h i n g a termination interview. Construction of Accounts As previously stated, the data were constructed through 14 in^depth.'interviews with parents from s i x f a m i l i e s having a h o s p i t a l i z e d , c h r o n i c a l l y i l l c h i l d . I t i s the parents' accounts of t h e i r experience that comprise the data for t h i s study. In t h i s kind of research, data are constructed through the research act; that i s , through i n t e r a c t i o n between researcher and p a r t i c -ipant. The i n t e r a c t i o n i n t h i s study was i n i t i a t e d by the questions out-l i n e d i n the interview guide (Appendix A) but was sustained through the i n t e r p l a y of questions and answers a r i s i n g from the data c o l l e c t i o n pro-cess. That i s , the questions which arose i n the mind of the researcher were i n d i r e c t response to the answers given by the p a r t i c i p a n t s and were used along with r e f l e c t i v e statements to e l i c i t in-depth explanations. Thus, i t was the informants who guided the course of data c o l l e c t i o n . The construction of accounts assumed a ground of common under-standing between the researcher and p a r t i c i p a n t . Both i n d i v i d u a l s bring a wealth of s o c i o - c u l t u r a l experience to the research i n t e r a c t i o n . 34 Given t h i s v a r i a t i o n i n background, assumptions regarding understanding may i n fact be f a l s e . Therefore, i t was important to continually v a l -idate the accounts as they were being constructed. As Lofland (1978) points out, i t i s through the int e r p l a y of in-depth exploration that intimate f a m i l i a r i t y with the data i s achieved. Being a beginning researcher, the writer may have i n i t i a l l y assumed too great a l e v e l of common understanding. However, as data c o l l e c t i o n progressed, d i f f e r -ences i n understanding became more apparent and the data were explored more rigorously which yielded a r i c h e r account. E t h i c a l Considerations This study was conducted with the approval of the Univ e r s i t y of B r i t i s h Columbia's Screening Committee for Research Involving Human Sub-j e c t s . The r i g h t s of the p a r t i c i p a n t s were safeguarded i n the following ways: A. Informed Consent and Risk/Benefit 1. The i n i t i a l verbal explanation and written consent (Appendix B) gave the clear option of p a r t i c i p a t i o n or nonparticipation without prejudice. 2. The written consent stated that withdrawal from the study could occur at any time. 3. The written consent informed p a r t i c i p a n t s that they could refuse to answer any questions. 4. P o t e n t i a l benefits were outlined i n the written consent form and were discussed with the parents. Many parents experience the benefit of being able to t a l k to a health professional who gives wholehearted attention to t h e i r concerns. This i s supported by the l i t e r a t u r e (Canam,._i980; Hayes Morris et a l . , 1982; McCollum & Gibson, 1970; Smith, 1974) and by the wr i t e r ' s experience. 35 5. The written consent informed p a r t i c i p a n t s that, as the con-versations were to be tape recorded, they could request erasure of any tape or portion of a tape at any time during the study. B. Privacy 1. Privacy was insured during the interviews ( t h i s necessitated some interviewing away from the h o s p i t a l s e t t i n g , for example, i n the family's home). C. C o n f i d e n t i a l i t y 1. Access to the data was l i m i t e d to the researcher and her advisory committee. 2. Tape recordings were stored under lock and key i n a l o c a t i o n sep-arate from the t r a n s c r i p t i o n s . 3. Transcriptions were coded with subject i d e n t i t y known only to the researcher. 4. Transcriptions were stored under lock and key. 5. P a r t i c i p a n t s were never i d e n t i f i e d with t h e i r responses. 6. P a r t i c i p a n t s ' i d e n t i t i e s were not revealed. Data Analysis As Lofland (1971) states, "one's a n a l y t i c and observational a c t i v i t i e s run concurrently. There i s temporal overlapping of observational and a n a l y t i c work" (p.118). This meant that during the interviewing phase, the researcher was attempting to make some abstract sense of the parents' explanations of t h e i r r e a l i t y . Aamodt (1982) points out that i n t h i s type of study the appropriateness of the abstractions i s insured through repeated contacts with p a r t i c i p a n t s . 36 P r i o r to beginning formal a n a l y s i s , and a f t e r each i n t e r v i e w , the c a s s e t t e tapes were t r a n s c r i b e d verbatim. Stern (1980) a r t i c u l a t e d three aspects of the a n a l y t i c process which adequately describe the ana-l y s i s that occurred during t h i s study. The f i r s t step was to systematically review the t r a n s c r i p t i o n and simply code the data according to substance. Coding of the data was c a r r i e d out during i n t e r v i e w i n g and t r a n s c r i p t i o n as w e l l as during formal a n a l y s i s . Then the data were cat e g o r i z e d by c l u s t e r i n g r e l a t e d p i e c e s . T h i r d l y , concepts were formed and an a n a l y t i c framework was constructed from the data. Each stage of a n a l y s i s i n v o l v e d a r e l a t i v e l y higher l e v e l of a b s t r a c t i o n which r e q u i r e d c o n t i n u a l v a l i d a -t i o n against concrete observations. Both the ca t e g o r i e s a r i s i n g from the second step and the concepts of the t h i r d were dynamic i n t h e i r r e l a t i o n -ships which meant that r e l a b e l l i n g and r e o r g a n i z a t i o n occurred many times throughout the a n a l y t i c process. As i t was the researcher's i n t e n t to present data which enhance understanding of the shared aspects of the parents' accounts, a n a l y s i s i n v o l v e d constant comparison among the p a r t i c i p a n t s ' e x p l a n a t i o n s . Summary tThe methodology used i n t h i s study was guided by the i n t e r p r e -t i v e p e r s p e c t i v e and incorporated aspects of the phenomenological and grounded theory approaches. P a r t i c i p a n t s were s e l e c t e d by v i r t u e of t h e i r s t a t u s as expert witness regarding the h o s p i t a l i z a t i o n of a c h r o n i c a l l y i l l c h i l d . In t o t a l , s i x mothers and three f a t h e r s from s i x f a m i l i e s having a h o s p i t a l i z e d c h r o n i c a l l y i l l c h i l d p a r t i c i p a t e d i n the study. 37 The data were c o l l e c t e d through 14 in-depth interviews which were i n i t i a t e d using a semi-structured interview schedule. Although i t was the intent of the researcher to conduct multiple interviews with each of the p a r t i c i p a n t s , unexpected occurrences resulted i n two parents being interviewed only once. Of the other f a m i l i e s : one had two interviews; two had three interviews; and, one had four. The data were comprised of the parents' accounts of t h e i r i l l -ness experiences i n the h o s p i t a l s e t t i n g . These accounts were constructed through the research act; that i s , through the i n t e r a c t i o n between par-t i c i p a n t and researcher. Data c o l l e c t i o n proceeded as questions arose i n the mind of the researcher i n response to the parents' answers. This in t e r p l a y enabled the in-depth exploration of the parents' perspectives. The p a r t i c i p a n t s ' r i g h t s i n terms of informed consent, privacy and con-f i d e n t i a l i t y were safeguarded throughout the research process. Data analysis occurred both concurrently with, and subsequently to data c o l l e c t i o n . Three steps described the a n a l y t i c process: f i r s t , the data were coded according to content; then, the data were categorized by c l u s t e r i n g r e l a t e d pieces; and t h i r d l y , concepts were formed and an a n a l y t i c framework was developed. Constant comparative analysis resulted i n the r e l a b e l l i n g of concepts and reorganization of the framework many times throughout the process. The findings of t h i s study w i l l be presented i n the following chapter which discusses the parents' accounts of t h e i r experience. Chapter 4 THE PARENTS' ACCOUNTS This chapter w i l l present the p a r t i c i p a n t s ' accounts of t h e i r experience with the h o s p i t a l i z a t i o n of t h e i r c h r o n i c a l l y i l l c h i l d . While recognizing the unique nature of each family's experience and i t s r e f l e c -t i o n i n the parents' accounts, i t i s the intent of t h i s study to present data which enhance understanding of the shared aspects of the parents' ex-periences. Thus the s i m i l a r i t i e s which are apparent among the accounts have been organized according to unifying categories and themes. The parents located h o s p i t a l i z a t i o n within the context of t h e i r experience with chronic i l l n e s s . Therefore, the t r a j e c t o r y of chronic i l l -ness w i l l be the f i r s t area presented and w i l l provide the framework f o r further discussion. The two categories which seem most s i g n i f i c a n t i n terms of how parents understand and explain t h e i r experience have been termed " i n t e r f a c e with bureaucracy" and "r e l a t i o n s h i p s i n the h o s p i t a l s e t t i n g . " During h o s p i t a l i z a t i o n , parents i n t e r f a c e between the bureaucracy and t h e i r c h i l d . The meaning given to the i n t e r f a c e w i l l be discussed i n r e l a t i o n to the following themes: the a c q u i s i t i o n of information which parents perceive to be necessary to t h e i r understanding; and, parents' need to c o n t r o l c e r t a i n aspects of the i l l n e s s experience i n h o s p i t a l f o r the i l l c h i l d and f o r themselves. Associated with the parents' p o s i t i o n at the int e r f a c e between the h o s p i t a l bureaucracy and t h e i r sick c h i l d are the re l a t i o n s h i p s among the people involved. The two themes which w i l l be discussed are: the r e l a t i o n s h i p between parent and sic k c h i l d and the re l a t i o n s h i p between parent and health p r o f e s s i o n a l . -38-39 The Trajectory of Chronic I l l n e s s When the parents talked about the h o s p i t a l i z a t i o n of t h e i r c h r o n i c a l l y i l l c h i l d they located i t within the context of dealing with chronic i l l n e s s on a day-to-day bas i s . This ongoing i l l n e s s experience can be depicted by a tr a j e c t o r y which i s characterized by long-term dura-t i o n and shape. H o s p i t a l i z a t i o n i s viewed as a facet of t h i s t r a j e c t o r y rather than as a d i s c r e t e incident or as independent of day-to-day coping. Parents explained the meaning of h o s p i t a l i z a t i o n by discussing i t within the chronic i l l n e s s story and wanted to begin at the beginning i n order to recount the l o g i c a l sequencing of t h e i r experience. M: I might as well s t a r t from the beginning, eh? M: Well, how 'bout i f we s t a r t when we f i r s t went in? Another mother put the current h o s p i t a l i z a t i o n i n context t h i s way: M: But he's had h i s hips operated on twice. He's had major hip surgery on those when he had the pins put i n . He got staph i n f e c t i o n so he had to go and have that cleared up, and came back - and that didn't work so they had to operate and dig i t out - looked l i k e they'd taken a fresh tub of l a r d and ju s t scooped a "tablespoon of i t out except they took i t with f l e s h . I: Oh. M: And then of course I had to take him home l i k e that and i t had to stay open. They wouldn't put s t i t c h e s i n cause they didn't want any foreign matters i n there. So we had to, to be very c a r e f u l with that. I: Uh huh M: So we got a l l that straightened away f i n a l l y and then what else - of course h i s back and h i s shunt and he had hernias when he came down at s i x months old and he had to have those out. And urn, l e t ' s see what else - and now his bladder. I: ¥h huh M: And he's had h i s , a prolapse worked on but i t didn't work. 40 I: A r e c t a l ? M: Ya. And uh, he w i l l probably eventually have to have h i s t e s t i c l e s brought down cause they're s t i l l up. In addition to describing h o s p i t a l i z a t i o n as part of a sequence of events, the parents explained that h o s p i t a l i z a t i o n also had a p a r t i c u l a r conceptual " f i t " with the ongoing experience. For many of the f a m i l i e s , h o s p i t a l i z a -t i o n had been incorporated as part of t h e i r normal routine. M: I used to be very wary about going to doctors and hos p i t a l s and that, and now i t j u s t seems as though i t ' s a everyday thing, even though i t ' s not. M: Um, but over the past couple of years we're i n the routine of i t now that i t doesn't r e a l l y bother us anymore. M: I mean r e a l l y , when they come i n , I mean i t ' s j u s t a normal thing. I mean I don't even think about i t anymore. I ju s t pack my things and the kid s ' . This p a r t i c u l a r " f i t " seems associated with an i l l n e s s experience of long-term duration and appeared to f a c i l i t a t e coping i n that h o s p i t a l i z a t i o n was accepted as part of l i v i n g with i l l n e s s . M: W e i l l f o r the f i r s t , f o r the f i r s t while i t was r e a l l y h e c t i c . Ill mean I didn't know whether I was coming or going and then I was worried about the other kids at home. I: Mm hm M: And everything else, but now i t ' s j u s t f a l l e n into routine -ju s t l i k e everyday l i f e routine sort of type thing. I t ' s easier to pack up now and leave everybody behind than i t was, say, s i x months ago. Even parents who were r e l a t i v e l y early i n the i l l n e s s experience a r t i c u l a r i ted a sense of knowing that h o s p i t a l i z a t i o n was part of a long-term t r a j e c t o r y and that the ongoing experience would influence t h e i r a b i l i t y to cope. M: I know i t ' s probably not the l a s t time that I'm here so, that 41 she's here so, getting prepared f o r that. F: Well we know that that's what the doctor has said before, and uh, i t ' s , you know - he's said i t before that he's going to have to come back anyways. I t ' s j u s t a question of time. So I guess you have to keep that i n the back of your mind. M: Well i t ' s quite awhile already that t h i s has been going on see, and almost every week there's another problem coming up so you kind of, you kind of learn - and, we l l i t w i l l come. I know i t w i l l come a f t e r awhile you know, a f t e r months or whatever, and years. The parents''accounts have described t h e i r sense of the tr a j e c t o r y ; that i s , i t has a beginning, an ongoing course that i s l a r g e l y unpredictable, and an unknown end. Several parents explained t h e i r understanding of h o s p i t a l i z a t i o n as a facet of a more encompassing i l l n e s s experience by describing t h e i r c h i l d ' s h o s p i t a l i z a t i o n as d i f f e r e n t from that which occurs i n r e l a t i o n to acute i l l n e s s . M: And um, I'm sure i f the c h i l d r e n were well enough, i f they were up and running around - i f they were j u s t i n f o r t o n s i l s or adenoids or something minor, you know - i f one of the other mothers wanted to stay with my c h i l d , i f i t was i n that case then I could go shopping f o r an hour or so. M: I don't know how people do i t that are not i n h o s p i t a l that long. I have been i n h o s p i t a l so long that I have enough, um enough, l o t s of um, what do you say, time to ta l k about i t here. I: Mm hm, mm hm M: And I don't know how people do i t that they are j u s t a short stay. But I guess i f they are j u s t a short stay, they don't have a chronical disease. The, the acute disease probably i s d i f f e r e n t . I t i s apparent that the impact of h o s p i t a l i z a t i o n on the course of the i l l n e s s t r a j e c t o r y i s not l i m i t e d to the duration of the actual admission to h o s p i t a l . 42 M: I t takes me, l e t ' s see - i t takes me about a week to pre-pare myself before I can even come down here, mentally. M: When I go home i t w i l l take me a good'week to even want to do anything. But I w i l l f e e l g u i l t y because I'm s i t t i n g there not doing anything, thinking that I should be doing things that I didn't do while I was here f i n h o s p i t a l ] . M: And I found that one s i x months that he didn't come into h o s p i t a l I saw a big change - i n h i s personality, i n um, oh now l e t ' s see - the way he would do things. I: Mm hm M: He completely, he matured. He never seemed to go backwards a f t e r that, he ju s t kept going forwards and forwards. Whereas everytime he comes to the h o s p i t a l he has to turn around and s t a r t um, b u i l d i n g again - now not necessar i l y i n material things but as f a r as uh, as I say doing things f o r himself. M: Mm hm, and the l a s t one he, I think uh, the l a s t one was, we l l I guess i t was the biggest one he had, I don't know. His leg was t i l t e d so uh, I understand that he had to cut r i g h t through h i s l e g - I don't know. And um, he's never been the same. He's r e a l l y not picked up since then. He could drink through a straw when He went i n Cto hospital] but not since he's had that l a s t one [operation] . Thus i t seems for parents of c h r o n i c a l l y i l l c h i l d r e n , that h o s p i t a l i z a -t i o n i s perceived as having complex implications for the ongoing i l l n e s s experience. As i l l u s t r a t e d by the l a s t account, h o s p i t a l i z a t i o n frequently resulted i n the unexpected creation of new i l l n e s s problems which the parents took into consideration when evaluating the success of the endeavor. The parents appeared to understand that cure i s not a reason-able expectation with regard to t h e i r c h i l d ' s chronic i l l n e s s and so judged the success of h o s p i t a l i z a t i o n i n terms of the o v e r a l l impact on the course of the t r a j e c t o r y . 43 M: But uh, I have, of course everybody I t a l k to they say w e l l , you know, that sounds t e r r i b l e . I says w e l l , I know so and so and they've got t h i s and t h i s - and t h e i r c h i l d w i l l never walk and I says as f a r as I'm concerned going through t h i s so he can walk and lead a f a i r l y normal l i f e l a t e r , I says i t ' s been worth i t . M: At the beginning i t seemed l i k e they were ju s t using her for guinea pigs. I: Mm hm M: They were g i v i n ' her, takin' so much blood out of her and doing, doing so many tests on her, you know. I think i t ' s a l l worth i t because she's a l o t better o f f now than she was two . years ago. H o s p i t a l i z a t i o n was often explained i n terms of changes i n the c h i l d ' s i l l n e s s which resulted i n major i l l n e s s problems for the parents when they returned home. M: And then with the oxygen, we needed that r i g h t away. Like um, they didn't want to l e t her out of the h o s p i t a l l a s t time unless we had oxygen of our own at home. M: I've been stuck at home - l i k e when he was i n h i s l a s t cast, l a s t summer i t was three months and I was home 24 hours a day with him because he couldn't go out anywhere. I couldn't carry him - he was too heavy, too cumbersome - couldn't get him into the car -.because he was spread-eagled. The following account ref e r s to parents who were unaware of t h e i r c h i l d ' s a l l e r g i e s , so h o s p i t a l i z a t i o n meant a change i n t h e i r perception of the c h i l d ' s i l l n e s s . M: Mm hm. Just l i k e today on the way up here we were t a l k i n g . The a l l e r g y people are gonna be seeing us - now we know that he's got a l o t of a l l e r g i e s and he's probably got a l l e r g i e s to animals, to dust - almost everything. F: Cigarette smoke - everything. M: Cigarette smoke and everything. So we're, w e ' l l quit smoking i n the house. We'll have to get r i d of the cats, we're going to have to wash down the walls, shampoo the carpets, get i t spic and span - but s t i l l you can't r e a l l y keep up with a l l the dust and s t u f f . 44 As can be seen from the previous accounts, changes i n the ch i l d ' s condition which are accommodated within the scope of "normal" routine i n the h o s p i t a l s e t t i n g may cause complex management problems i n the home. Thus, the parents' i l l n e s s experience may be s i g n i f i c a n t l y altered a f t e r incidents of h o s p i t a l i z a t i o n . However, the parents appeared w i l -l i n g to accept many d i f f i c u l t i e s as long as they perceived the outcome to be p o s i t i v e i n terms of t h e i r c h i l d ' s health. It seems that h o s p i t a l i z a t i o n brings many of the concerns ascribed to the chronic i l l n e s s experience into acute focus. Two of these are: u n p r e d i c t a b i l i t y regarding the course of the i l l n e s s and uncertainty about outcome. Several parents explained t h e i r worries i n the following ways: M: You know i t happens and you take i t i n your s t r i d e and you get through t h i s one and you ju s t s i t back. I know, w e l l , we're free again f o r another month - I says I wonder what w i l l happen. So I s i t here everyday, I come i n and I wonder what's going to happen today that's going to keep us here ( i n h o s p i t a l ) . M: Sometimes we ' l l come down for a week and end up staying two months or sometimes we ' l l come prepared to stay three weeks and end up staying three days. And, so we never know, from the time we pack up to go we never know how long w e ' l l be here. F: You never know, cause even they don't know. They j u s t keep going at a d i f f e r e n t s t r i d e t r y i n g t h i s and tr y i n g that. So i t ' s j u s t as easy for us to t r y ourselves except f o r i t ' s a l i t t l e more scary because of we don't r e a l l y know when he has a reaction that, what he's reacting to, or how to handle i t . In summary, i t seems that parents perceive the h o s p i t a l i z a t i o n of t h e i r c h r o n i c a l l y i l l c h i l d to be a facet of the ongoing i l l n e s s experience which may be pictured as a t r a j e c t o r y . Thus, h o s p i t a l i z a t i o n i s interpreted i n r e l a t i o n to past experience, present impact on the course 45 of the tr a j e c t o r y and anticipated future r a m i f i c a t i o n s . Chronicity seems to be the major organizing factor f o r the experience and provided the common bond among the parents who p a r t i c i p a t e d i n the study. I t i s ap-parent that i n order to f u l l y appreciate the meaning parents give to the h o s p i t a l i z a t i o n of t h e i r c h r o n i c a l l y i l l c h i l d , one must consider the p a r t i c u l a r frame of reference within which the experience i s constructed. Several themes which appear p a r t i c u l a r l y s i g n i f i c a n t to the parents' accounts of h o s p i t a l i z a t i o n w i l l be presented i n the follow-ing two sections e n t i t l e d Interface with the Bureaucracy and Relationships i n the Hospital Setting. Interface with the Bureaucracy During the h o s p i t a l i z a t i o n of t h e i r c h r o n i c a l l y i l l c h i l d , parents by necessity come into contact with the bureaucracy of the health care del i v e r y system. The p o s i t i o n they seem to occupy i s one of i n t e r f a c i n g between the bureaucracy and t h e i r c h i l d , that i s , i t appears the parents perceive t h e i r r o l e as one of mediating t h e i r c h i l d ' s i l l n e s s experience within the bureaucratic s e t t i n g . Three themes seem p a r t i c u l a r l y dominant i n r e l a t i o n to the parents' r o l e during h o s p i t a l i z a t i o n : acquiring informa-t i o n , managing the c h i l d ' s i l l n e s s experience i n h o s p i t a l , and modifying the emotional impact of h o s p i t a l i z a t i o n for themselves. Acquiring Information When a c h r o n i c a l l y i l l c h i l d i s admitted to h o s p i t a l , another dimension i s added to the family's ongoing i l l n e s s experience. I t seems that the parents, as active p a r t i c i p a n t s i n the i l l n e s s experience, require 46 information i n order to orient themselves to the s e t t i n g and to gain an understanding of how the h o s p i t a l i z a t i o n i s l i k e l y to progress. I t i s evident i n the accounts that parents know what they require i n terms of information that f a c i l i t a t e s t h e i r a b i l i t y to cope but that t h i s informa-t i o n i s often d i f f i c u l t to obtain i n the bureaucratic s e t t i n g . These points w i l l be i l l u s t r a t e d i n the discussion of accounts that follows. The parents c l e a r l y a r t i c u l a t e d the importance of rec e i v i n g the ri g h t information at the r i g h t time. M: And then of course we had to pay for the nurse's f l i g h t out and f i f t y d o l l a r s f or her care. And a l l of th i s was absolutely new to us you know. We j u s t had no idea - nobody ever explain-ed t h i s to us when he was being flown out or anything. I: Mm hm M: And since then we have r e a l l y pushed at home to have things written up i n written form. M: I'd l i k e to um, the doctors r i g h t there t e l l i n g me everything r i g h t away. M: If doctors and nurses would explain very good to patients and to parents that would help a l o t too you know. F: You don't know what to do -M: When you don't know. Many of the parents were also e x p l i c i t about the nature of the information they required and explained i t i n terms of being complete, straightforward, honest, and relevant to the i l l n e s s experience. M: I, myself, would l i k e him to say, t e l l me the truth and you know, the barest f a c t s and the goods and bads of i t . 47 M: We are going to t a l k to the doctors again about that and they - want to know exactly from them what they think - what they f e e l , you know, and i f they can show me a picture from a normal b r a i n and her br a i n . I: Mm hm M: And j u s t , j u s t l e t me know what they think,,you know. Say i f i t was t h e i r own baby, what they think. F: You don't want anything hidden from you because you should have a r i g h t to know that I mean. M: You have to know. F: I t ' s , i t ' s your k i d and anything that's going to a f f e c t him i s gonna a f f e c t you and you should know i t . It i s apparent that the kind of information deemed important by the parent i s r e l a t e d to t h e i r p o s i t i o n on the i l l n e s s t r a j e c t o r y . For example, the parents who were early i n the experience searched f o r information that would help them understand the diagnosis whereas the parents who had been coping with i l l n e s s f o r many years required information pertaining to p a r t i c u l a r i l l n e s s problems that were proving d i f f i c u l t to manage i n the home. However, regardless of t h e i r p o s i t i o n on the t r a j e c t o r y , the parent desired information that was d i r e c t l y r e l a t e d to t h e i r perspective of the c h i l d ' s i l l n e s s . This i s i l l u s t r a t e d i n the following account: M: Now he [the doctor] said "I myself and the other s p e c i a l i s t , both together, we believe that she should have t h i s medica-t i o n , j u s t to see what i t does" he s a i d . I: Mm hm M: So I said w e l l , and i f i t helps her - i f i t heals out the toxoplasmosis what i s left:then? Maybe there i s j u s t , she i s j u s t a vegetable you know - maybe ju s t l i v i n g l i k e a vegetable. And she doesn't have toxoplasmosis but she ju s t l i v e s - and he said , "Well I guess so." Unfortunately, much of the f r u s t r a t i o n and concern a r i s i n g from parents' encounters with the health care bureaucracy seem to focus on t h e i r 48 d i f f i c u l t i e s acquiring the information they need. For many of the parents f r u s t r a t i o n arose when they were unable to "catch" the physician. M: We, parents, we were t a l k i n g the other day i n the parents' room there and we were saying "I think the nurses have a conspiracy going with the doctors." I says when we leave the room they phone the doctors and say okay, they're gone, you can come up and do i t without mum i n the way. I: You must f e e l l i k e that sometimes. M: Sometimes i t does, ya. 'Cause i t , you can be gone ten minutes and a doctor shows up and you've missed him and you've got to wait around f o r another two- — three days before you can t r y and track him down again. The parents spent much of t h e i r time i n h o s p i t a l waiting, as i l l u s t r a t e d i n the previous account. This appears t y p i c a l of the bureaucratic i n e r t i a that caused much of the parents' d i s s a t i s f a c t i o n during the h o s p i t a l i z a t i o n . Other parents were unable to e l i c i t information once they did contact the physician: M: Because a l l the other doctors said to me when I asked something and they said "Well, I'm sure your doctor has explain-ed i t to you." Or, you know, e s p e c i a l l y because they don't r e a l l y know themselves about i t because they don't have experience with i t . I: Mm hm M: I think they didn't want to say much. I: Mm hm M: You know, so they would always say "Well, I'm sure your doctor has explained i t to you and you know a l l about i t . " And w e l l , I didn't want to say, no, she didn!:t explain much to me - she ju s t said something but I didn't r e a l l y , she didn't r e a l l y explain i t . This account c l e a r l y i l l u s t r a t e s the d i f f i c u l t i e s parents encounter within the bureaucracy when multiple care givers are involved and no one i s w i l l i n g to accept the r e s p o n s i b i l i t y of informing the parents. 49 Making sense of explanations was problematic f o r parents when contradictory information was received from d i f f e r e n t i n d i v i d u a l s , again a r i s i n g from fragmentary care, or when the terminology was inappropriate as explicated i n the following accounts: M: But I got two d i f f e r e n t s t o r i e s - one that he had heart f a i l u r e , h i s heart q u i t , and one was that he j u s t quit breathing. I didn't know who to believe or what was going on so I ju s t said no more anesthetic and operations u n t i l we know what i s going on. M: Another thing that's hard on us i s that when the doctor does t a l k to us sometimes - i n long medical terms - we don't know what they mean. It i s apparent that the parents perceived the physician to be t h e i r primary source of information. Several of the mothers mentioned nurses having a ro l e as a "go between" which seems an acknowledgement of the h i e r a r c h i c a l structure of the bureaucracy. As one mother explained: M: And you can always leave the questions with the nurses but maybe t h e i r [doctors'3 answer w i l l bring another question -and you l i k e to be person to person to ask an answer. Another mother f e l t that nurses were r e s t r i c t e d i n the information they could give byytheir p o s i t i o n so that they "kind of hold a l i t t l e b i t back" because "they don't want anything to come back on them." It seems that the t a c t i c s which parents use to acquire informa-t i o n i n the face of f r u s t r a t i o n depend upon t h e i r p o s i t i o n on the t r a j e c t o r y of the family's experience with chronic i l l n e s s . I n i t i a l l y , some of the parents took the path of le a s t resistance and waitedIfof.-information to come t h e i r way or u t i l i z e d another i n d i v i d u a l to act as an i n t e r p r e t e r . I: Do you stop him and have him explain i t a d i f f e r e n t way f o r you? F: We ju s t l e t i t go. 50 M: Oh ya - 'cause some doctors have walked i n and they be t a l k -ing t h e i r b i g fancy t a l k and everything and as soon as they walk out of the room I don't know what they're saying - and yet i f a nurse i s there they can usually explain i t - as good as they can, r i g h t , which makes i t a l i t t l e easier. •I: So how do you get the information you need? F: Usually from my s i s t e r because I guess she can r e l a t e to them more because she's, I guess, she's a l i t t l e higher educated than we are or whatever. However, i t seems that the parents generally ar r i v e d at a point i n t h e i r experience where they began to take a very a c t i v e , d i r e c t r o l e i n acquir-ing information. One p a r t i c i p a n t described her approach t h i s way: M: But I've said to her you can't l e t doctors f e e l they can walk a l l over you. You've got to stand up. If you've got a question ask i t . I f you don't understand what they're t e l l i n g you, for crumb sakes say so. I: Mm hm M: Because I ' l l say, I beg your pardon would you t e l l me that i n my language please, i n layman language I c a l l i t and I said -then t h e y ' l l s i t down and then t h e y ' l l turn around and explain i t to me so that i f I have a question I ' l l ask i t . I f i n d that with our orthopedic doctor, he's w e l l known for i n and out,- so I've learned with him that when he's i n I go stand i n front of the door. Another mother who i n i t i a l l y searched f r a n t i c a l l y f o r someone who would explain the s i t u a t i o n became directed once she understood the system. M: And now I know whom to go to, but a t t f i r s t I didn't know the doctors - I didn't know who was who - and even i f I had seen them once I s t i l l didn't remember a l l of them and who should know what, so I ju s t asked whoever I grabbed you know, hoping that they would give me an answer or at le a s t they could, you know, say well j u s t a minute I ' l l c a l l him f o r you. That's not how i t was - they j u s t say well I'm sorry I can't say anything about i t . But now uh, I got to know a l l these people and now I f e e l more comfortable about asking because i f I know, i f I know the surgeon should know i f I ask him about the shunt that he put i n - he has to know about i t - everything I ask. 51 Yet another approach was to search for sources of information outside the h o s p i t a l s e t t i n g : F: Well I read a l i t t l e b i t i n an a l l e r g y book at home and I was reading up on i t . It seems that a l l parents perceive the need for information; however, the t a c t i c s used to meet the need vary from person to person. The 'degree of u n p r e d i c t a b i l i t y inherent i n the i l l n e s s experience appears to influence the r o l e the parent takes i n acquiring information. One mother who remained very passive regarding information a c q u i s i t i o n explain-ed that no one had any answers regarding her daughter's i l l n e s s . M: And knowing that i t might not work - my daughter knows everytime that they do anything on her that i t i s for her best - that they're t r y i n g a l l they can, and she knows that we're a l l waiting around for some miracle doctor to come along. Although a c t i v e l y seeking information seems to be the most e f f e c t i v e strategy f o r most parents, i t i s only u s e f u l when someone has answers to the questions. To summarize, the data reveal that parents consider the a c q u i s i -t i o n of complete, honest, straightforward information e s s e n t i a l to t h e i r understanding of h o s p i t a l i z a t i o n as part of the i l l n e s s experience. Even the most as s e r t i v e parents who have had a long-term i n t e r a c t i o n with the h o s p i t a l bureaucracy seem to have d i f f i c u l t y obtaining the information they perceive as necessary. However, these parents tend to pursue the issue. The parents who cope passively appear to have the most d i f f i c u l t y acquiring explanations yet are the most content. The second dominant thread i n the parents' accounts of the i l l n e s s experience i n h o s p i t a l i s t h e i r a b i l i t y to exert control within the bureau-c r a t i c s e t t i n g . I t seems that by c o n t r o l l i n g c e r t a i n aspects of the experience for the si c k c h i l d and for themselves the parents are able 52 to cope more e f f e c t i v e l y with the bureaucracy. Control w i l l be discussed i n r e l a t i o n to managing the experience for the si c k c h i l d and for themselves. Managing the Child's I l l n e s s Experience i n Hospital The c o n t r o l parents assume regarding the management of t h e i r c h i l d ' s i l l n e s s experience within the h o s p i t a l s e t t i n g seems related to t h e i r understanding of the i l l n e s s which i s i n e x t r i c a b l y linked to the a c q u i s i t i o n of information discussed i n the previous section. A l l of the parents were concerned about mediating the i l l n e s s experiences for t h e i r c h i l d r e n i n h o s p i t a l . M: You know, maybe I'm more protective than I should be, um, when he's i n the h o s p i t a l , because I do have to make sure that he never has a bad experience - because of the time he does spend i n h o s p i t a l . This account i l l u s t r a t e s what seems to be the primary purpose of parents' c o n t r o l l i n g r o l e and that i s to protect the c h i l d . Two patterns of "taking c o n t r o l " were evident i n the parental accounts. The f i r s t i s a very a c t i v e , a ssertive c o n t r o l l i n g of both the physical and emotional environments for the c h i l d and appeared-among par-ents who had a lengthy experience with t h e i r c h i l d ' s i l l n e s s that was characterized by a high degree of p r e d i c t a b i l i t y i n the course of medical management. I t also seems that complex management regimes i n the home pre-pared these parents to assert c o n t r o l regarding management of care i n h o s p i t a l . The parents explained t h e i r r o l e i n the following ways: M: Well I l i k e to be here j u s t to make sure that he does eat h i s meals, and that things are done for him. Now I don't know what would happen i f I wasn't here - whether the nurse would be i n and out as often. There have been days when we haven't seen a nurse a l l day - l i k e yesterday was an extremely slow day. We didn't see anybody, but uh, as I say, I don't complain because I'm there to do whatever has to be done. 53 M: When you come down you pretty well have to cover a l l your bases so that you're not going back up there and then have to come down three weeks l a t e r to have t h i s other thing taken care of. I: Mm hm M: You've::got to say okay, now I'm down here I got t h i s , t h i s and t h i s done. M: I t Cthe h o s p i t a l ] was j u s t l i k e a home e n v i r o n m e n t than a h o s p i t a l 'cause I was ri g h t with the chi l d r e n and uh, you know, I could tend to t h e i r needs j u s t l i k e I was at home. These "active c o n t r o l l i n g " parents saw t h e i r r o l e as i n i t i a t i n g , coordi-nating and providing care as well as emotional support f o r t h e i r c h i l d r e n . Consequently, they perceived themselves as i n t e g r a l members of the health team and ref e r r e d to the team as "we". M: He's coming to t a l k about the, her r e s p i r a t i o n s , and see what we can do about i t . The foundation of th i s active c o n t r o l l i n g stance appears to be located i n the parents' b e l i e f that they know t h e i r c h i l d r e n best. They perceive themselves to be the only health team members who understand the t o t a l i t y of the c h i l d ' s i l l n e s s experience. M: I mean I l i v e with the c h i l d f o r 24 hours of the day and I know the c h i l d and I know what he's capable of doing and what he does and doesn't do when he's sic k . I mean I've been around him for f i v e years when he's i n and out of hos p i t a l s a l l the time. M: Well I'm not bragging or anything but I know them so w e l l . Her breathing changes the l e a s t l i t t l e b i t maybe another "person wouldn't notice i t but I can. I know exactly what's happening... and I mean, I know how my son l i k e s to be set, how he l i k e s to be comfortable and uh, we l l d i f f e r e n t l i t t l e things l i k e t h i s . [This mother had two h o s p i t a l i z e d c h i l d r e n ] Many of these parents' d i f f i c u l t i e s with the bureaucracy arose when t h e i r understanding of the c h i l d was not appreciated and/or t h e i r judgement was questioned i n such a way that t h e i r a b i l i t y to exert control 54 was diminished. M: I f e e l , we always f e e l we can do more for Brian. I: I sure b e l i e v e i t - parents know t h e i r c h i l d r e n . M: That's r i g h t they do, ya - a l o t of people don't r e a l i z e that though. M: And I said "My son's shunt i s malfunctioning, can I have somebody i n to look at i t ? " - w e l l no, they said i t wasn't - i t was j u s t h i s glands and they fought me over i t and by Sunday he was having spasms. M: You walk i n here and you t e l l them the answers to a l l the questions they ask. They put i t on the chart but nobody reads the chart. I: Mm hm M: I says I've tol d them three times don't give him homo-genized milk, i t makes him too phlegmy, um, but i t ' s s t i l l coming up on h i s tray. Despite the constraints of the system, these parents seemed able to main-t a i n t h e i r pattern of active c o n t r o l through a strong sense of s e l f worth. M: And she says, that's not r i g h t . And I says, aah, f i n a l l y somebody who believes me. I says, I'm not a neurotic mother - I says, when something's wrong I know i t ' s wrong. The second pattern evident i n the parents' accounts i s one of "passive c o n t r o l . " Here the parents focused on mediating t h e i r c h i l d ' s i l l n e s s experience i n h o s p i t a l by providing emotional support. I t seems that by c o n t r o l l i n g t h e i r own a f f e c t , so as to present an o p t i m i s t i c out-look to the c h i l d , the parents f e l t they were strengthening the c h i l d ' s inner resources. Some of the explanations are as follows: F: He needs a constant, a constant support to keep him s t r i v i n g I guess, you know. M: Ya, oh ya - she has to be, at a l l times she has to be kept cheery and she can't be t i r e d out and everything. 55 F: Like I think they can pick up on your vibes. I f you're down about t h e i r being i n t h e i r p o s i t i o n I think they can pick that up so you have to come here a l l the time and be happy for him, even whether you're not, even i f you f e e l i t or not. This strategy i s termed "passive c o n t r o l " i n that the parents were able to c o n t r o l a c e r t a i n aspect of t h e i r c h i l d ' s i l l n e s s experience but did not appear to be "doing" anything. The passive pattern of control was evident among parents who seemed to lack knowledge which would support a more act i v e r o l e i n terms of dealing with the bureaucracy. Two factors are apparent, the f i r s t being the nature of the c h i l d ' s i l l n e s s . Again, the mother whose c h i l d had an i l l n e s s that was l a r g e l y unexplainable and unpredictable from the medical perspective f e l t strongly about her r o l e i n c o n t r o l l i n g the c h i l d ' s emotional environment but appeared passive i n terms of the "outside" world. Her accounts r e f l e c t e d her lack of involvement i n making decisions re l a t e d to managing care. M: Well, she had the heart doctor come i n and check her and she had her r a d i o l o g i s t come i n and then she had her blood doctor come i n and now they're a l l going to pow-wow and :; decide whether to send us home and not do anything or whether um, - send us home and not do anything and wait ' t i l she gets si c k and then do something - which i s taking a b i g r i s k 'cause i f they wait ' ; t i l she gets s i c k that means they're going to take a r i s k j u s t doing anything on her. I: Mm hm M: Or do something and hope that i t doesn't make her s i c k . Because l a s t time they did something on her, her kidneys f a i l e d . So uh, I don't know what they're going to decide. So r e a l l y I am j u s t playing a waiting game... I always go along with what they say. I don't think I've got a choice. In addition, the passive pattern of control was u t i l i z e d by parents i n two f a m i l i e s with i l l n e s s experiences of short duration. Thus, the second factor seems to be lack of knowledge as a r e s u l t of l i m i t e d experience. 56 with i l l n e s s . Both sets of parents exhibited a change i n t h e i r pattern of c o n t r o l from predominantly passive to predominantly a c t i v e as the h o s p i t a l i z a t i o n of t h e i r c h i l d r e n progressed. I t would seem that some parents encounter a turning point i n how they perceive and subsequently deal with aspects of the h o s p i t a l bureaucracy as they move along the tra j e c t o r y of the i l l n e s s experience. The parents explained i t this" way: M: And I've learned now that you r e a l l y have to f i g h t i f you want something. Because, I mean, I r e a l i z e there are circumstances where they don't - but I couldn't stand to see him i n that much pain anymore. M: But up ' t i l then I guess everyone j u s t f e e l s , everyone j u s t walked i n and did what they wanted. And I didn't r e a l l y notice i t up u n t i l then you know. But then that one day I noticed i t - and i t was j u s t almost the l a s t day when I was i n there now, but I thought she w i l l probably have to come into h o s p i t a l quite often, more often. This won't be the l a s t time and i f - then I think i t ' s enough now. She has been here so often now, I think from now on I'm j u s t not going to allow i t anymore, that student doctors, you know, come i n there a l l the time and examine her a l l the time. F: Well I think we're t r y i n g to avoid anything that i s n ' t r e a l l y necessary -. things that, I guess i t bugs him a b i t you know, to be poked around and that kind of s t u f f and i f i t i s n ' t r e a l l y necessary I don't see — you know i n the beginning we didn't mind 'cause they can learn from i t , eh? So we can appreciate the f a c t that they need, they need somebody to be a guinea p i g or whatever too but I mean i t comes to, a f t e r a f t e r so much of i t , i t ' s j u s t w e l l go f i n d somebody else to poke around now. Thus i t seems that once the implications of c h r o n i c i t y become cl e a r the parents tend to take a more active advocacy r o l e . I t was evident that a l l of the parents used t a c t i c s that served to modify both the ph y s i c a l and emotional environment f o r the c h i l d ; however, the parents appear to re l y on a dominant strategy which influences t h e i r pattern of co n t r o l . 57 Two aspects of the children's i l l n e s s experience i n h o s p i t a l were of p a r t i c u l a r concern to the parents; the c h i l d ' s experience with pain and dis r u p t i o n of the c h i l d ' s normal routine. The parents' protec-t i v e r o l e seemed e s p e c i a l l y threatened when t h e i r c h i l d was i n pain which resulted i n a great deal of emotional turmoil as w e l l as strong attempts to control the s i t u a t i o n . One mother expressed her p o s i t i o n t h i s way: M: As long as they don't touch her and don't uh, and don't make her cry you know, and makerher have pain and s t u f f , w ell I don't mind i f they come and ask questions. I don't mind that - or look at her. I: Mm hm - so that part of what you do here i s make i t easy, as easy f o r her as you can. M: That's r i g h t - I t r y . Another mother explained: M: So i t was Thursday night - midnight by the time they operated. They had him scheduled for Friday and f i n a l l y I c a l l e d the Head Nurse down. Even with h i s medications a f t e r they put him back on i t - I c a l l e d her down and I said look at him, I says he's absolutely blue, he's i n pain and he's s u f f e r i n g . I says, l o o k . i t , he's j u s t j e r k i n g , he's j u s t uh - I t e l l you that's not a time I'd l i k e to go through again. Several parents also r e l a t e d the d i f f i c u l t i e s they encountered i n t r y i n g to a t t a i n or maintain some sense of normalacy i n t h e i r c h i l d ' s l i f e while i n h o s p i t a l . M: And h i s normal bedtime, as they asked me, i s between seven t h i r t y and eight o'clock. And I thought f o r sure last..night he'd crater about s i x - and he was kind of dozing and of course then they come i n and change h i s bandage and wake him up again and then they'd come i n and take h i s temperature and then they'd give him h i s medicine. They're doing a l l t h i s a f t e r the time when he should have been asleep.- so i t was eleven o'clock I guess by the time he f i n a l l y s e t t l e d down l a s t night. 58 M: Like the Pablum - when they were feeding him Pablum and then a l l of a sudden he didn':t want i t , that's l i k e I t o l d the doctor, well would you eat steak four times a day? You know, I says i t ' s r i d i c u l o u s , you've gotta, you've gotta s t a r t feeding him f r u i t s or something - something a d i f f e r e n t f l a v o r so he can you know, have a d i f f e r e n t taste. It stands to reason that when h o s p i t a l i z a t i o n i s a frequently recurring aspect of a long-term i l l n e s s experience, parents attempt to reduce i t s disrupting influence on the c h i l d by maintaining some sort of a normal routine. The underlying concern seems to be maintenance and promotion of the c h i l d ' s normal growth and development which often appears to be ignored by health professionals within the bureaucratic s e t t i n g . F i n a l l y , the data reveal that not a l l of the p a r t i c i p a n t s wished to exert c o n t r o l a l l of the time. In f a c t , i t seemed to be a r e l i e f f o r some parents to temporarily r e l i n q u i s h c o n t r o l and have health professionals assume the r e s p o n s i b i l i t y of:.caring for the sic k c h i l d . M: But then at times you know - we've taken him into h o s p i t a l - I've been so upset at home that I'm going to the h o s p i t a l -once I got to the h o s p i t a l I seem to j u s t sort of... F: relax cause you know people are around you... M: that can take him and look a f t e r him - where I don't know what I'm doing. But i t j u s t sort of, I ju s t sort of l e t i t a l l out and then I s t a r t crying because I f e e l so good. In summary, the data show that parents are very concerned about the impact of h o s p i t a l i z a t i o n on t h e i r c h i l d ' s i l l n e s s experience and attempt to mediate the impact by c o n t r o l l i n g c e r t a i n aspects of the experience. Parents' c o n t r o l l i n g behaviour appears to serve the purposes of protecting the c h i l d and normalizing the experience which means to "make as normal as possible given the constraints of the i l l n e s s and the 59 s e t t i n g . " Two patterns of control are evident: the f i r s t involves a focus on ac t i v e p a r t i c i p a t i o n i n managing the c h i l d ' s care while the second involves a focus on providing emotional support to strengthen the c h i l d ' s inner resources. The parents' perceived a b i l i t y to p o s i t i v e l y modify the c h i l d ' s experience i n h o s p i t a l seems to re i n f o r c e t h e i r sense of s e l f worth despite evidence that t h e i r understanding of the c h i l d i s • often not valued within the bureaucratic system. As previously stated, the second facet"of the theme rel a t e d to c ontrol i s how parents cope with the personal impact of t h e i r c h i l d ' s h o s p i t a l i z a t i o n which w i l l be presented i n the following section. Modifying the Emotional Impact of H o s p i t a l i z a t i o n f o r Self H o s p i t a l i z a t i o n of a c h r o n i c a l l y i l l c h i l d appears to carry a s i g n i f i c a n t emotional impact f o r the parents i n that many of the fears, uncertainties and f r u s t r a t i o n s that are usually d i l u t e d within the home set t i n g are brought into acute focus within the h o s p i t a l s e t t i n g . M: Everybody worries about your c h i l d you know, so you uh, worry a l l the time too. You s i t down and you s i t there and even i f you do something, needle work or whatever, you think about i t a l l the time. Where here at home you talk other things. People phone you and you ta l k about other s t u f f , or neighbours v i s i t you and you ta l k about things - and you see other things so don't always concentrate on that. Where over there a l l the time you concentrate about - or over there i f someone, another mother comes to v i s i t you, what are you t a l k i n g about? You're:: t a l k i n g about her sic k c h i l d and your si c k c h i l d . The parents described many t a c t i c s f o r c o n t r o l l i n g t h e i r emo-t i o n a l overload yet a l l were rel a t e d to personally derived s t r a t e g i e s . In other words, the bureaucracy appears to o f f e r parents l i t t l e assistance with the emotional d i f f i c u l t i e s that a r i s e during t h e i r child's- h o s p i t a l -ization,. 60 The dominant strategy used by the pa r t i c i p a n t s of t h i s study seem to be s e l e c t i v e i n a t t e n t i o n which allowed s p e c i f i c concerns to be put aside for a period of time i n order to l i g h t e n the emotional load and thus f a c i l i t a t e coping. This strategy did not a l t e r awareness of a d i f f i c u l t y ; instead the parents stated that they simply chose not to attend to the concern. The following accounts i l l u s t r a t e t h i s point: M: I says any complication could take place under any of h i s anesthetics. Anything could happen - j u s t l i v e day to day and go that way. I don't know, I'm ju s t happy the way things are going. I: Uh huh - i t sounds l i k e the "anything could happen" part i s n ' t a part that you r e a l l y l i v e with. M: I ignore i t - again my o s t r i c h coming out i n me. M: I t makes i t easier on me i f I can forget completely a l l of my motherly r e s p o n s i b i l i t i e s except to Janice. I: Hm hm M: I have to, 'cause i f I come down here, I j u s t come down -then everyday I'd be making a phone c a l l home to make sure the kids are okay, and I'd be t a l k i n g to them and I'd be upsetting myself twice as much. Some parents found i t necessary to take a "time out" i n order to cope with t h e i r c h i l d ' s h o s p i t a l i z a t i o n . By p h y s i c a l l y removing themselves from the h o s p i t a l s e t t i n g , parents could put aside many of the associated concerns and give themselves the opportunity to refocus on such things as day-to-day tasks that required a t t e n t i o n . One father described i t th i s way: F: I think i t ' s more not when he needs v i s i t s but when we need not to be here, you know. I: Uh huh - I guess I was wondering about that "needing not to be here" - i s that j u s t an, an escape from the whole thing f o r a short period of time? F: Ya, exactly, that's exactly what i t i s - i s not having to be here. 61 Like a l l of the coping s t r a t e g i e s that w i l l be discussed, s e l e c t i v e i n -attention to problems does not seem to be a unique response to h o s p i t a l -i z a t i o n but a general strategy that was modified to deal with the s p e c i f i c s of the s i t u a t i o n . A second strategy involved " a n t i c i p a t i n g the worst" and appeared to occur i n the l i g h t of experience with previous incidents that were negative as w e l l as unexpected. Some parents f e l t that by preparing themselves f o r what they feared might happen, they were protecting them-selves from unexpected, negative emotional j o l t s . Some parents explained i t in the following ways: M: And I says, a c t u a l l y any surgery they have ever t r i e d has never worked the f i r s t time - so I'm quite prepared that t h i s i s going to be a number two and three operation type thing to get f i x e d . M: But now that she has had these complications, so I'm prepared for more. F: You j u s t keep t e l l i n ' yourself what's going to happen so that when i t does happen i t doesn't r e a l l y a f f e c t you i n a dramatic way I guess. This strategy appeared to have two p o s i t i v e e f f e c t s : reduction of anxiety as the s i t u a t i o n seemed les s unpredictable and more e f f e c t i v e coping i f the parents' fears were r e a l i z e d . M i rroring was a strategy common to a l l the p a r t i c i p a n t s . Here the parents used other parents with si c k c h i l d r e n as mirrors against which t h e i r own s i t u a t i o n could be r e f l e c t e d and evaluated. Invariably the parents found something to support a p o s i t i v e outlook with regard to t h e i r experience. M: I think that's what gave Janice her strength and what gave me mine was being on oncology because they are a l l f i g h t i n g f o r one thing 62 and that's to stay a l i v e . I mean they a l l know that they might not make i t . M: They a l l know that most l i k e l y they won't make i t , but they're a l l there f i g h t i n g f o r i t and that's - i f they can keep f i g h t i n g and go through the h e l l they go through so can every-body else . M: But you look around and you see so many other kids that are worse o f f and you're a c t u a l l y thankful. F: I t ' s sad but i t ' s enlightening for me. H o s p i t a l i z a t i o n appears to have some p o s i t i v e e f f e c t s f o r parents i n reducing t h e i r sense of i s o l a t i o n and allowing them to re-evaluate t h e i r d i f f i c u l t i e s i n r e l a t i o n to those of other parents. I t seems that parents need to ta l k about t h e i r experience and the t a l k i n g that occurred between parents i n conjunction with the mirroring process was c i t e d as p a r t i c u l a r l y supportive. One mother described i t t h i s way: M: Like you automatically come together and ta l k about, everyone ta l k s about t h e i r problem you know. At f i r s t I was not - I didn't ask anybody what problem they had - what kids, what t h e i r kids had and s t u f f but people came and asked me a l l the time - and you know I found out i t helped me ac t u a l l y , you know, to ta l k about i t . The bond between parents i s one of common understanding a r i s i n g from a shared experience: M: You get more support from the parents that have got s i c k kids than you do from even family members that don't know what's going on. Several parents remarked that t a l k i n g with family and friends was d i f f i c u l t as they lacked a f i r s t - h a n d appreciation of the experience. As w e l l , some parents r e a l l y did not want t h e i r friends "to know a l l about [ t h e i r j problems and s t u f f . " The parents s e l e c t i v e l y u t i l i z e d t h e i r resources, as described by one mother: 63 M: I don't,^sometimes I f e e l that I don't r e a l l y want to ta l k about i t too much, uh, when you're out with your friends because i t s p o i l s your - i t makes you unhappy, you know. I: Mm hm M: And i f you go out you want to be happy, and so i f you are i n h o s p i t a l and can talk to other people more, then you don't r e a l l y have to, to ta l k to other - at home anymore about t h i s , you know. Not only was i t h e l p f u l for the parents to ta l k about t h e i r own concerns but many found that, by v i r t u e of t h e i r longstanding experience i n h o s p i t a l , they could be a resource to other parents. F:. And a l o t of people that have come here, they want somebody to t a l k to but they don't j u s t want to ta l k to anybody, you know. They can't j u s t walk up and s t a r t t a l k i n g to anybody - but when you're there with somebody that has, you know, i s with t h e i r k i d and you have your k i d or whatever, you can ju s t f i n d things to ta l k about. I t j u s t comes out and then you can f i n d that people'11 open themselves up a l i t t l e more - and they want to get i t out. You know they want to get i t out but they don't have a source - you know, i f you can be that source, which you know, bein' strength f o r somebody else can do something for you too, you know. F i n a l l y , many parents r e l i e d on hope to deal with the uncertain-t i e s of t h e i r s i t u a t i o n . T y p i c a l l y the parents gathered a l o t of informa-t i o n , both medical and e x p e r i e n t i a l , to gain i n s i g h t into t h e i r c h i l d ' s i l l n e s s . Often the evidence from d i f f e r e n t sources was discrepant and d i f -f i c u l t to accept so the parents tended to respond by taking a hopeful stance. M: She knows every time that they do anything on her that i t i s for her best - that they're t r y i n g a l l they can - and she knows that we're a l l waiting around f o r some miracle doctor to come along. F: Well that's, when you have a sick k i d I think that's b a s i c a l l y a l l you got to r e a l l y hang onto i s hope, you know. And, uh, you want to get a l o t of that from the doctor. You want them to say things that are going to give you that hope you know. I t doesn't happen - so what they say you've got to in t e r p r e t into something that's hopeful. 64 To summarize, parents of c h r o n i c a l l y i l l c h i l d r e n are resource-f u l i n the strategies they use to manage the emotional impact of t h e i r c h i l d ' s h o s p i t a l i z a t i o n , thus enabling them to remain strong and e f f e c -t i v e i n t h e i r r o l e as mediator of t h e i r c h i l d ' s i l l n e s s experience within the bureaucracy. Associated with the parents' p o s i t i o n at the in t e r f a c e between the h o s p i t a l bureaucracy and t h e i r sick c h i l d are the r e l a t i o n -ships among the people involved. The following section w i l l discuss two themes which appeared s i g n i f i c a n t i n the parental accounts. They are: the r e l a t i o n s h i p between parent and sic k c h i l d and the r e l a t i o n s h i p between parent and health p r o f e s s i o n a l . Relationships i n the Hospital Setting I t i s evident from the parental accounts that t h e i r r e l a t i o n -ships i n the h o s p i t a l s e t t i n g give meaning to the i l l n e s s experience which i n turn d i r e c t s t h e i r behaviour. Not s u r p r i s i n g l y , the most i n f l u e n t i a l r e l a t i o n s h i p appears to be between the parent and the sic k c h i l d . The Relationship Between Parent and Sick C h i l d The data show that the r e l a t i o n s h i p between parents and t h e i r c h r o n i c a l l y s i c k c h i l d i s al t e r e d when the c h i l d i s admitted to h o s p i t a l . Most of the parents explained that during h o s p i t a l i z a t i o n , p r i o r i t i e s were s h i f t e d which resulted i n the i l l c h i l d becoming the primary focus of atte n t i o n . For these parents, an i n t e n s i f i c a t i o n of the r e l a t i o n s h i p with t h e i r s i c k c h i l d seemed to occur. Two mothers described i t th i s way: M: I've learned from that experience that I cannot have the rest of my family around me when he's here because I devote 100% to him - but I can't s p l i t . I t ' s j u s t too hard - i t tears you apart. M: But um, I don't know - I guess I'm ju s t too much involved with t h i s one .[child i n hospital] so I don't r e a l l y miss the other one that much. 65 Whereas another set of parents who had experienced repeated h o s p i t a l i z a -tions, of lengthy duration, i n a r e l a t i v e l y short time span were concerned about diminished i n t e n s i t y and expressed i t i n th i s manner: M: But i t ' s j u s t strange because he's got a mother and a father part-time and we've got a son part-time. However, regardless of t h e i r perspective with regard to i n t e n s i t y , the parents a r t i c u l a t e d that p r i o r i t i e s i n day-to-day l i v i n g were rearranged around the h o s p i t a l i z e d c h i l d . The same family said t h i s about having a c h i l d i n h o s p i t a l : F: You have to revolve your l i f e around him instead of having your kids as part of your l i f e . While another mother explained: M: You know, j u s t came home and I usually had supper already i n the h o s p i t a l so I ju s t came home and uh, sat down here f o r a l i t t l e while and talked. And then we went to bed and i n the morning get up early and drank tea and o f f we went again, both - a l l of us. I t was ju s t l i k e a ho t e l here I guess -coming f or overnight i n your house. Several parents found that h o s p i t a l i z a t i o n provided them with a s p e c i a l opportunity to be with t h e i r s i c k c h i l d and to share the i l l -ness experience i n a p a r t i c u l a r l y meaningful way: M: We've had l o t s of times where we're ju s t s i t t i n g here but that t h i s i s mine and Janice's - um, how would you say i t -mine and Janice's world together. At home I haven't got that much time to spend with her because the other kids are there - and I know she might not be around forever and t h i s i s mine and hers s p e c i a l time - at le a s t mine. I get to spend as much time with her as I can even i f i t has to be i n h o s p i t a l at le a s t we've got i t together. I: I t sounds l i k e your r e l a t i o n s h i p i s one of you experiencing h i s experiences as much as you possibly can. M: Ya, I l i k e to do that - I don't l i k e him to have to go through a l l t h i s alone. 66 It seemed very important for the parents to see themselves as dependable for t h e i r sick c h i l d - that not only would they be present when the c h i l d needed them but they would cope e f f e c t i v e l y . M: That's why I l i k e being around a l l the time - i n case something happens or anything, then I am there and he's got confidence i n me, you know. 'Cause he knows that Mum w i l l be there i f he's, i f she i s needed. I: I'm always amazed at how w e l l parents cope and um, how strong you are. M: You have to - you have to. I f I l e t every, i f I l e t a l l my f e e l i n g s come s t r a i g h t out I'd be no good to Janice at a l l -there wouldn't be any sense i n me being here. It appears that parents understand they hold a unique perspective i n terms of t h e i r c h i l d ' s experience with i l l n e s s and so take t h e i r r e s p o n s i b i l i t i e s very s e r i o u s l y . Usually one parent assumed the r o l e of mediating the c h i l d ' s experience i n h o s p i t a l which i n t e n s i f i e d f e e l i n g s of r e s p o n s i b i l i t y as w e l l as perceptions of a strong bond with the si c k c h i l d . M: But while I'm here t i n hospital] I f e e l I .have the respon-s i b i l i t y of the ch i l d r e n and uh, I've seen that I'm the only one of the family here - w e l l , then I f e e l that that's my r e s p o n s i b i l i t y . I t i s clear that the parents' r e l a t i o n s h i p with t h e i r c h r o n i c a l l y sick c h i l d i s something they generally f e e l very p o s i t i v e about and that t h e i r sense of the r e l a t i o n s h i p guides behaviour i n the h o s p i t a l s e t t i n g . The data reveal that the parents see themselves as a very s p e c i a l r e -source f o r t h e i r s i c k c h i l d r e n during the periods of h o s p i t a l i z a t i o n and are w i l l i n g to s i g n i f i c a n t l y a l t e r day-to-day patterns of l i v i n g i n order to meet t h e i r children's needs. I t i s also apparent that the r e l a t i o n s h i p between parents and a c h r o n i c a l l y s i c k c h i l d develops and changes i n response to the demands of the i l l n e s s experience. 67 The f i n a l theme to be discussed i n r e l a t i o n to the parents' accounts i s t h e i r r e l a t i o n s h i p with health care professionals. The Parents' Relationships with Health Care Professionals Parents of c h r o n i c a l l y i l l c h i l d r e n i n t e r a c t with and depend upon a large number of health professionals over the course of t h e i r c h i l d ' s i l l n e s s . At no point i s t h i s more apparent than during times of the c h i l d ' s h o s p i t a l i z a t i o n when some measure of control i s relinquished by the parents to health professionals who then assume r e s p o n s i b i l i t y f o r managing some aspects of the c h i l d ' s i l l n e s s . I t i s c l e a r from the emphasis placed on r e l a t i o n s h i p s with health professionals i n the p a r t i c i p a n t s ' accounts that t h i s theme, along with the four previously discussed, make a s i g n i f i c a n t contribution to the meaning parents give to the i l l n e s s experience i n h o s p i t a l . The data show that parents' r e l a t i o n s h i p s with health professionals are founded on a great deal of understanding and i n s i g h t regarding the discrepancies that e x i s t between t h e i r frame of reference and that of the medical world. Several parents a r t i c u l a t e d an awareness that t h e i r per-spective often d i f f e r e d from the medical perspective, as i l l u s t r a t e d i n the following account. The mother's view was based on experience with the c h i l d while the medical view was based on lack of evidence to support the existence of pathophysiology. M: Now, I must say doctors are quick to say " I t ' s temper" and I says that I am well aware of the difference.between temper and t h i s . I know that i f i t was a temper tantrum that i f he turned blue and passed out he would automatically begin to breathe again. But I says, t h i s guy doesn't, he does not do that - he i s j u s t a dishrag i n my arms. I says I have to go and at f i r s t cold water would bring him out because i t would be a shock, that i t would, he would suck i n r e a l f a s t and i t would move the mucus down. 68 Another parent explained h i s view of the discrepancy t h i s way: F: The thing i s the h o s p i t a l i s concerned with any immediate i l l n e s s what i s goin' on with him - that he's not functioning a l l the time as w e l l as he could be. Then t h e y ' l l do something about i t . But as f a r as tr y i n g to set out a d i e t or a s t y l e , a l i f e s t y l e for him you know, to pattern him a f t e r , they're more concerned about when things are already wrong with him. You know, when he has h i s asthma or whatever - so that's an immediate thing - okay l e t ' s do something about the asthma or l e t ' s do something about the a l l e r g i c r e a c t i o n . But as f a r as seeing what they can do to develop him i n , you know, i n , l i k e a normal k i d or whatever they don't seem to do much i n that aspect... somewhere along the l i n e they've got to s t a r t preparing him f o r h i s future too — and, or gi v i n g us some kind of idea of what we can do to develop h i s future you know, as normally as possi b l e . Despite the f r u s t r a t i o n parents experienced i n r e l a t i o n to the d i f f e r i n g viewpoints, they often seemed to be very accepting of the medical per-spective, as i l l u s t r a t e d by the following accounts: M: I mean they also f e e l with me but they are also very interested i n seeing, you know, what they could do with the medication - or i f i t helps or not so that they know the next time. I: Mm hm M: Which I understand very good too. I t ' s very important too you know to f i n d out f o r the next, the next time they have t h i s k i d that they know they i f they should give i t or not. If i t helps or - I guess f o r the s t a t i s t i c s they have, they need something l i k e that too - to f i n d out how often i t damages and and how often i t helps and s t u f f . M: Well because they're, you know - because i t ' s not t h e i r c h i l d I think. I mean they a l l say what they would do l i k e , i f t h e i r c h i l d was sic k but they cannot f e e l - l i k e that's what my doctor also s a i d . He, he was not emotional l i k e didn't have the emotional f e e l i n g s that I, we had. He wasn't involved emotionally l i k e we were. I n i t i a l l y , many parents tended to accommodate the health professional's perspective but there came a time i n the tr a j e c t o r y of the i l l n e s s experience where the r e l a t i o n s h i p changed and the parents 69 began to assert themselves. One mother was i n the room when two physicians began a procedure on her c h i l d . She explained the i n t e r a c t i o n t h i s way: M: And I was standing there, I guess he, he thought I was a dummy or what, I don't know. That's how I f e l t you know. And uh, he saw me - and I was also standing there when the U o t h e r ] doctor made a v i s i t and he explained i t a l l to them, I was standing there too you know. I don't know how he could do i t - i n front of me he was saying, he was saying " i t i s easier to do [the procedure] there and we should but I'm doing i t here," you know... And I was a c t u a l l y dummy. Instead of saying hold i t , you are not going to do i t there, you should do i t here, you know, I was not saying anything. But next time I, I made sure next time they wouldn't do i t again. This account i l l u s t r a t e s that the parents' perceptions of health profes-sionals changed over the course of t h e i r i l l n e s s experience and were r e f l e c t e d by changes i n t h e i r i n t e r a c t i o n s . The parents' r e l a t i o n s h i p with health professionals appeared to be governed by the assumption that p r a c t i t i o n e r s act with the children's best i n t e r e s t i n mind. However, when experience dictated otherwise, the r e l a t i o n s h i p s changed as the health professionals were no longer perceived to be a l l i e s . Further, the medical perspective often directed physicians to suggest interventions that were at odds with what parents perceived to be h e l p f u l . One mother described i t t h i s way: M: He Ethe doctor] j u s t , he said to me "I want to give him nice s t r a i g h t f e e t " - he said "make him b e a u t i f u l s t r a i g h t f e e t . " And I said, w e l l i s he going to walk with them? - oh no, h e ' l l never walk. And I said what's, what's the good of doin' i t you know, and um he said "well to give him nice s t r a i g h t f e e t . " No, I said , not to go through that pain you know, because I was t a l k i n ' to a lady, two or three women, r i g h t - who's had t h i s done to t h e i r c h i l d r e n and they said i t ' s very, very p a i n f u l . Why should I do that to him? Again, t h i s jeopardized the parents' a b i l i t y to perceive health profes-sionals as a l l i e s i n the i l l n e s s experience. 70 The parents did not seem to fi n d a r e c i p r o c a l understanding or respect f o r t h e i r perspective from many of the health professionals they encountered. M: We were on holidays one time. He was due f o r h i s usual assessment and the doctor threw him into t r a c t i o n f o r a week and uh, into cast. And that was the hard time because I was s p l i t between my husband and my daughter on t h e i r holidays and my son i n the h o s p i t a l - and I'm used to when he's here I'm here. And that was r e a l l y tough - and he would r e a l l y be upset when we would leave and the nurse said to me one time, "you know you're not spending enough time with him." And I could've j u s t slapped her one because, I said i f she only knew what I was going through i n s i d e . This account i l l u s t r a t e s that chronic childhood i l l n e s s i s managed within the context of day-to-day family l i f e which means that the influences on the experience are complex and can only be understood by asking the parents. The discrepancy between p r o f e s s i o n a l and personal-perspectives resulted i n some parents' perception that t h e i r c ontribution to the c h i l d ' s i l l n e s s experience was not valued by the health p r o f e s s i o n a l s : F: Well the doctor t o l d you to - you should go out more often or so - the nurses would look a f t e r her f o r you. M: The family doctor, ya. That didn't make me very, f e e l very much better because he made i t f e e l to me l i k e i f breast feeding was not important. And I thought i t was so important to me you know, to, to nurse her. I thought that was the best thing I could do for her - to stay, to take care of her. I t appears from these accounts that health p r o f e s s i o n a l s ' lack of understanding and respect f o r the parents' perspective often r e s u l t s i n parental d i s t r e s s . .However, th i s does not seem to s i g n i f i c a n t l y a l t e r the parents' a t t i t u d e toward health professionals i n that few parents were c r i t i c a l of the care t h e i r c h i l d received and even when complaints were voiced they were subsequently q u a l i f i e d to protect or redeem the s t a f f . 71 The data reveal that parents do expect a certain standard of care to be given by health professionals, which they explain this way: M: I shouldn't, I shouldn't have to ask f or -.fchese'zthings :to".be done - i t should be natural routine, 'cause even the student nurse pointed i t out. F: But the thing you think about i s l i k e the things that r e a l l y upset me personally i s a l l the things that happened to him that are unnecessary you know - l i k e the IV and his foot swelling up and sending him home before his stitches were healed, you know. They had a l i t t l e b i t of i n f e c t i o n . Things l i k e that where he has to go back into the hospital and have other kinds of operations or whatever. However, even when expectations were not met, the parents were very protective of health professionals and always q u a l i f i e d complaints so that the sta f f position was supported. M: When the nurses st a r t coming i n after - and bothering the ch i l d and saying time to take your temperature and th i s and that and the other thing - I would just as soon they didn't, bother. He would probably be asleep by then and had a good night's rest. I t ' s hard - I know they're busy too. M: So, she was quite upset and phoned me and I got upset so I phoned the doctor - and the doctor told the Head Nurse and the Head Nurse, I guess... F: l a i d i t out to them... M: l a i d i t out to them - and the nurses there are j u s t great though. They're r e a l l y good with Jamie, I think each and every one of them. The parents seemed concerned about appearing overly c r i t i c a l but were generally unwilling to discuss the underlying rationale for the i r be-haviour. However, one mother explained her reservations t h i s way: M: You hate to r e a l l y say anything because i f you're not here you don't know what they could be doing to your k i d , you know. 72 The parents seem to face a dilemma i n t h e i r r e l a t i o n s h i p s with health p r o f e s s i o n a l s . On one hand, the parents have an ongoing dependency upon health prof e s s i o n a l s , with t h e i r s p e c i a l i z e d knowledge and s k i l l s , to manage c e r t a i n facets of t h e i r c h i l d ' s i l l n e s s , while on the other hand, as mediators of t h e i r c h i l d ' s i l l n e s s experience, the parents have an advocacy r e s p o n s i b i l i t y with regard to the c h i l d . I t appears the pa r t i c i p a n t s were concerned that vigorous attention to t h e i r advocacy r o l e would jeopardize t h e i r r e l a t i o n s h i p s with health professionals which would subsequently compromise t h e i r c h i l d ' s care. To conclude, several parents c l e a r l y a r t i c u l a t e d the need to be treated as i n d i v i d u a l s and to be recognized as valuable members of the health team. M: Sometimes when we're s i t t i n g there w e ' l l be r e a l l y calm and s t u f f , you know - but then i t b u i l d s up to where you get so mad at these people because they j u s t treat you l i k e a nobody i t seems. M: The nurses are pretty good - they're s t a r t i n g , I think they're s t a r t i n g to get better. I: What's happened that's d i f f e r e n t ? M: Well they see you i n the hallway and t h e y ' l l stop and t h e y ' l l t e l l you what's going on with Jamie and before they would j u s t walk past. Now they stop and they say h i and they t e l l you what Jamie's up to. Again, the parents' expectations seem related to the long-term nature of t h e i r i l l n e s s experience. The data reveal that the p a r t i c i p a n t s did not expect to be treated as newcomers to the system and several parents stated that acknowledgement of t h e i r lengthy as s o c i a t i o n was h e l p f u l . M: You know, one nurse when we came i n was r e a l l y good. I r e a l l y l i k e her. She was supposed to ask us these questions that we've been asked tons and tons of times - she answered most of them h e r s e l f . 73 For some parents, supportive r e l a t i o n s h i p s with s t a f f were incorporated as an ongoing facet of the t r a j e c t o r y . M: She was there from day one when we f i r s t started bringing Dan i n - and that was over twenty years ago. And so, i t was a r e l a t i o n s h i p that we had going for over twenty years. Thus i t i s apparent that the r e l a t i o n s h i p s parents develop with health professionals have a s i g n i f i c a n t impact on t h e i r perception of the i l l -ness experience i n h o s p i t a l . Summary This chapter has presented nine parents' accounts of t h e i r perceptions regarding the h o s p i t a l i z a t i o n of t h e i r c h r o n i c a l l y i l l c h i l d -ren. The study found that h o s p i t a l i z a t i o n i s perceived to be a facet of the t r a j e c t o r y that depicts parents'..experience with chronic i l l n e s s . Parents describe the t r a j e c t o r y as having a beginning, a l a r g e l y un-predictable course and an unknown end. H o s p i t a l i z a t i o n , being a frequently recurring event i n the chronic i l l n e s s experience, becomes semantically defined as a normal part of routine. I t i s explained i n terms of i l l n e s s problems which a r i s e during the admission as w e l l as those that subse-quently have an impact upon the course of the t r a j e c t o r y . During h o s p i t a l i z a t i o n , parents perceive themselves to i n t e r f a c e between the h o s p i t a l bureaucracy and t h e i r i l l c h i l d . Their r o l e i s one of mediating the c h i l d ' s i l l n e s s experience within the bureaucratic set-t i n g and i s explained i n terms of: acquiring information that i s necessary to t h e i r a b i l i t y to cope; and, c o n t r o l l i n g aspects of the experience for the i l l c h i l d and f o r themselves. 74 The parents require information that i s complete, honest, straightforward, and relevant to the i l l n e s s experience; that i s , information that d i r e c t l y r e l a t e s to t h e i r perspective of the c h i l d ' s i l l n e s s . They explained that many i l l n e s s problems are associated with t r y i n g to get needed information within the bureaucratic s e t t i n g . These problems focused on the physician as he i s perceived to be the primary information source. Some parents use passive strategies to acquire i n -formation while others are very a c t i v e . I t seems that as h o s p i t a l i z a t i o n progresses, many parents change t h e i r s t r a t e g i e s and become more active i n pursuing the information they need. Parents are concerned about p o s i t i v e l y mediating t h e i r c h i l d ' s i l l n e s s experience i n h o s p i t a l . Two patterns of con t r o l were evident i n th i s regard. The f i r s t i s a very a c t i v e , a s s e r t i v e c o n t r o l l i n g of both the p h y s i c a l and emotional environments f o r the c h i l d and appeared among parents who had a lengthy experience with t h e i r c h i l d ' s i l l n e s s that was characterized by a high degree of p r e d i c t a b i l i t y i n the course of medical management. The second i s a passive pattern of control i n which the par-ents c o n t r o l l e d t h e i r own a f f e c t i n order to present an o p t i m i s t i c outlook to the i l l c h i l d . These parents were mediating t h e i r c h i l d ' s i l l n e s s experience by c o n t r o l l i n g some aspects of the emotional environment. However, they did not appear to be "doing" anything as they were passive with regard to managing the physi c a l environment. H o s p i t a l i z a t i o n of the i l l c h i l d activates many fears and uncertainties f o r the parents. They are resourceful i n managing the emo-t i o n a l impact of the s i t u a t i o n and e f f e c t i v e l y u t i l i z e s t r a t e g i e s which serve to: l i g h t e n the emotional load; enhance the p r e d i c t a b i l i t y of the course of t h e i r experience; and, p o s i t i v e l y r e i n f o r c e t h e i r a b i l i t y to cope. 75 The parents' r e l a t i o n s h i p s within the h o s p i t a l s e t t i n g give meaning to t h e i r i l l n e s s experience which i n turn d i r e c t s t h e i r behaviour. Two themes were important: the r e l a t i o n s h i p between parent and si c k c h i l d ; and, parents' r e l a t i o n s h i p s with health care professionals. H o s p i t a l i z a -t i o n i s s i g n i f i c a n t to the parent-sick c h i l d r e l a t i o n s h i p i n that parents and ch i l d r e n share a p a r t i c u l a r l y d i f f i c u l t experience. The parents explained that p r i o r i t i e s i n d a i l y l i v i n g are re-arranged around the h o s p i t a l i z e d c h i l d so that they could f u l f i l l t h e i r p rotective respon-s i b i l i t i e s to the c h i l d . Parents' r e l a t i o n s h i p s with health care professionals are characterized by an awareness of the discrepancies between t h e i r explana-tory models and those held by p r a c t i t i o n e r s . The parents explained that t h e i r perceptions of health professionals changed over the t r a j e c t o r y of t h e i r experience with i l l n e s s . This was often a r e s u l t of incidents which contradicted the parents' assumption that health professionals act with the c h i l d ' s best i n t e r e s t i n mind. As such, the parents' a b i l i t y to perceive c e r t a i n health professionals as a l l i e s i n the i l l n e s s experience was jeopardized. However, as a general stance, parents are protective of health professionals and reluctant to complain. The accounts emphasized that parents wish to be treated as i n d i v i d u a l s and to be recognized as valuable members of the health team. These fin d i n g s , along with re l a t e d research l i t e r a t u r e , w i l l be discussed i n the following chapter. Chapter 5 DISCUSSION OF FINDINGS Introduction This chapter w i l l discuss the findings of the study, as pre-sented i n Chapter 4, i n r e l a t i o n to the findings of other researchers. As such, the material w i l l be organized i n the same manner as the previous chapter. The l i t e r a t u r e presented i n Chapter 2 was reviewed f o r the purpose of providing a general background f or t h i s study, whereas t h i s chapter w i l l provide an in-depth exploration of research-based reports which s p e c i f i c a l l y r e l a t e to the categories developed during the phase of data a n a l y s i s . It was not the intent of the study to develop a rigorous theory regarding the h o s p i t a l i z a t i o n of c h r o n i c a l l y i l l c h i l d r e n but to explore the parents' perceptions of the experience. In addition, there i s scant research l i t e r a t u r e s p e c i f i c a l l y directed toward the study of c h r o n i c a l l y i l l c h i l d r e n and t h e i r parents during times of h o s p i t a l i z a t i o n . As such, the l i t e r a t u r e has been used to explain the findings presented i n t h i s report and to locate the study i n the context of rel a t e d work by other researchers. The Trajectory of Chronic I l l n e s s The parents who p a r t i c i p a t e d i n t h i s study explained h o s p i t a l i z a -t i o n within the context of t h e i r experiences with chronic childhood i l l n e s s . The data reveal that c h r o n i c i t y , rather than the s p e c i f i c medical diagnosis, i s the key fa c t o r i n the i l l n e s s experience. Thus, these parents understand and i n t e r p r e t h o s p i t a l i z a t i o n i n r e l a t i o n to past experience as w e l l as -76-anticipated future experiences. In addition, there are commonalities i n the concerns expressed during h o s p i t a l i z a t i o n regardless of the c h i l d ' s medical diagnosis. As a facet of the i l l n e s s t r a j e c t o r y , i t i s evident that i l l n e s s problems which a r i s e during h o s p i t a l i z a t i o n influence the course of the tr a j e c t o r y both while the c h i l d i s admitted and subsequent to discharge. I t i s evident that parents' experiences with chronic c h i l d -hood i l l n e s s e s are complex and that the experiences provide them with a p a r t i c u l a r frame of reference f o r viewing h o s p i t a l i z a t i o n . Several studies have examined the impact of chronic childhood i l l n e s s on family l i f e and w i l l be discussed i n r e l a t i o n to the pervasive, ongoing nature of the family's experience as well as the r o l e of h o s p i t a l -i z a t i o n i n the i l l n e s s experience. Hewitt, et a l . (1970) conducted one of the e a r l i e s t explorations of parents' perceptions of day-to-day l i v i n g with a c h r o n i c a l l y i l l c h i l d . This comprehensive study involved 180 i n t e r -views of parents having c h i l d r e n with cerebral palsy who were being cared for i n the home. A structured interviewing schedule was u t i l i z e d and the interviews were tape recorded. The interview schedule was not presented i n the report reviewed; however, a general d e s c r i p t i o n stated that the questions were "designed to obtain f a c t u a l information about a wide v a r i e t y of events which affected both the handicapped c h i l d and other members of the family" (p.22). Open ended questions were used to accommodate "non f a c t u a l " data. Data analysis incorporated both q u a l i t a t i v e and quantitative methodologies as the information was coded according to categories which arose from the interviews but was then quantified and analysed s t a t i s t i c a l l y . Verbatim accounts were used to explicate the quantified data. 78 The findings of that study i l l u s t r a t e that parents understand and explain t h e i r c h i l d ' s i l l n e s s i n r e l a t i o n to i t s impact on personal l i f e experience and that, for them,, ' l i f e ' , ' i l l n e s s ' , and 'treatment' become i n e x t r i c a b l y intertwined. I t i s evident that the parents' experience with t h e i r c h i l d ' s i l l n e s s was ongoing and responsive to changes i n the i l l c h i l d and the family. These findings support the con-c e p t u a l i z a t i o n presented i n the current study that parents of c h r o n i c a l l y i l l c h i l d r e n have an i l l n e s s experience that can be depicted as a tra j e c t o r y having both duration and shape. H o s p i t a l i z a t i o n was one factor mentioned by the parents i n the study by Hewitt et a l . (1970) as an influence i n the chronic i l l n e s s experience, but i n fac t received very l i t t l e a t tention i n t h e i r report._This might be explained by the fac t that the parents were interviewed at home, not during a period of h o s p i t a l i z a t i o n . The data suggest that i n the scope of day-to-day l i v i n g with chronic i l l n e s s , h o s p i t a l i z a t i o n plays a r e l a -t i v e l y minor r o l e but that i t i s important to view i t within the context of the ongoing i l l n e s s experience. Reference to t h i s study w i l l be made i n subsequent sections as i t appears that parents' day-to-day concerns and stra t e g i e s f or managing the c h i l d ' s i l l n e s s are s i m i l a r to those expressed by the parents who p a r t i c i p a t e d i n the current study. Again, t h i s supports a f i n d i n g of the current study that i n order to understand parents' per-ceptions of t h e i r c h r o n i c a l l y i l l c h i l d ' s h o s p i t a l i z a t i o n i t must be viewed i n the context of the i l l n e s s experience. McCollum and Gibson (1970) gathered data regarding family adaptation to chronic i l l n e s s from the parents of 56 fa m i l i e s having a c h i l d with c y s t i c f i b r o s i s . Again the data were both q u a l i t a t i v e and 79 quantitative and were c o l l e c t e d from three sources: a multiple choice questionnaire concerning the c h a r a c t e r i s t i c s and management of ch i l d r e n with c y s t i c f i b r o s i s ; interviews with parents by a p s y c h i a t r i c s o c i a l worker "to explore the issues_'of the disease that were of p a r t i c u l a r s i g n i f i c a n c e to each family" (p.572); and, monthly group meetings with a p e d i a t r i c i a n and s o c i a l worker. The data from the questionnaires were qu a n t i f i e d but i t i s unclear what was considered to be data~with regard to the interviews and monthly meetings or how the data were recorded and analysed. McCollum and Gibson (1970) found that family adaptation to c y s t i c f i b r o s i s i s progressive i n that i t i s ongoing and changes over time. Further, they i d e n t i f i e d some s i g n i f i c a n t points i n the "continuum of the experience" that became f o c i of parental concern. The findings suggest that there are common themes i n the parental experience of l i v i n g with a c h i l d having chronic i l l n e s s but that the way the themes are understood and explained vary from family to family. This i s congruent with the f i n d -ings of Hewitt et a l . (1970). Hewitt et a l . (1970) studied parents of c h i l d r e n with cerebral palsy, while McCollum and Gibson (1970) were interested i n the impact of c y s t i c f i b r o s i s on family l i f e . Therefore, conclusions regarding com-monalities i n the parents' experiences with chronic childhood i l l n e s s cannot be generalized to f a m i l i e s experiencing d i f f e r e n t i l l n e s s e s . However, the s i m i l a r i t i e s i n the findings i n d i c a t e to t h i s writer that some common-a l i t i e s do e x i s t i n the parental experience of having a c h i l d with chronic i l l n e s s which are independent of medical diagnosis. This i s further substantiated i n a survey of long term i l l n e s s e s among ch i l d r e n i n E r i e Country, New York (Sultz et a l . , 1972). The researchers used medical records 80 as the basic source of epidemiological information while " a d d i t i o n a l demographic and s o c i a l data were obtained from home interviews of a sam-ple of the study population f a m i l i e s " (p.27). A t o t a l of 606 cases comprised the medical record survey and, of these, 390 fa m i l i e s were sub-sequently interviewed using a structured questionnaire. Sample questions were not provided i n the report; however, construction and use of the questionnaire were discussed and appear to have received rigorous consid-e r a t i o n . The data were used to describe and quantify to some extent the impact of long term disease on the affected c h i l d and his family. Sultz et a l . (1972) found that c e r t a i n problems were repeated i n the parental responses and seemed common to fa m i l i e s with c h r o n i c a l l y i l l c h i l d r e n regardless of diagnosis. This supports the fi n d i n g of common themes among the parents' accounts i n the current study and indicates that an understanding of the concerns which are t y p i c a l of f a m i l i e s having c h r o n i c a l l y i l l c h i l d r e n may be a_.useful guide f o r exploring i n d i v i d u a l experiences. The current study found that parents' perceptions of h o s p i t a l i z a -t i o n changed over time, i n response to changes i n experience. S i m i l a r l y , Sultz et a l . (1972) reported several findings which address the influence of duration on the i l l n e s s experience. For instance, i t appears that the longer the duration of the c h i l d ' s i l l n e s s the higher the proportion of the mothers who had s p e c i a l t r a i n i n g which f a c i l i t a t e d the care of the c h i l d ; the more extensive the u t i l i z a t i o n of community services; and the greater the proportion of parents reporting decreased s o c i a l a c t i v i t y . I t must be remembered that the findings of Sultz et a l . pertain to a wide v a r i e t y of medical diagnoses which indicated to the wr i t e r that chronic i l l n e s s i s experienced d i f f e r e n t l y over time and that the duration of 81 the family's experience influences the responses given to the i l l n e s s . This lends support to the current study's f i n d i n g that h o s p i t a l i z a t i o n , as a facet of the t r a j e c t o r y of chronic i l l n e s s , i s perceived and managed d i f f e r e n t l y over time. In addition, Sultz et a l . (1972) found that the c h i l d ' s chronic i l l n e s s was managed predominantly by the parents within the home, with 45% not receiving continuous, a c t i v e medical care and 33% r e l y i n g on a physician i n private p r a c t i c e f or medical assistance. Again t h i s empha-size s that medical management plays a r e l a t i v e l y minor r o l e i n many o f a m i l i e s ' experiences with chronic childhood i l l n e s s . These findings are congruent with the explanations given by p a r t i c i p a n t s i n the current study that h o s p i t a l i z a t i o n i s only one facet of managing a c h i l d ' s chronic i l l -ness. The figures also serve to accentuate the competency of most parents i n providing care and coping with i l l n e s s problems on a day-to-day bas i s . It seems reasonable to assume that the parental pattern of co n t r o l established over the course of managing the c h i l d ' s i l l n e s s at home would l i k e l y influence parental behaviour i n h o s p i t a l , which appears to be the case i n the current study. Burton (1975) traced a l l the f a m i l i e s known to have a c h i l d with c y s t i c f i b r o s i s i n Northern Ireland. A l l but one family agreed to p a r t i c i -pate i n the study which meant that 97 parents and 58 c h i l d r e n i n 53 families were interviewed at home regarding t h e i r experience with c y s t i c f i b r o s i s . The interview schedules were devised by the author and were not made a v a i l -able to the reader. Data on the ch i l d r e n were gathered through the use of standardized assessment tests and assessment of s o c i a l functioning by the c h i l d ' s teacher. I t i s d i f f i c u l t to determine the adequacy of these 82 data c o l l e c t i o n methods or to judge the appropriateness of data analysis due to lack of information i n the report. The finding's were p r i m a r i l y reported as d e s c r i p t i v e s t a t i s t i c s with verbatim comments u t i l i z e d to enhance the reader's understanding. Burton's (1975) study c i t e s h o s p i t a l i z a t i o n as a s i g n i f i c a n t facet of the family's experience with c y s t i c f i b r o s i s . Further, the data suggest that the impact h o s p i t a l i z a t i o n exerts on the t r a j e c t o r y extends beyond the actual duration of the h o s p i t a l admission as evidenced by the f i n d i n g that 80% of the young c h i l d r e n i n the study exhibited some subse-quent d i f f i c u l t i e s s e t t l i n g back into t h e i r home environment. In addition, some c h i l d r e n had l o n g - l a s t i n g fears associated with p a i n f u l procedures. Although these findings r e l a t e to parents' perceptions of the e f f e c t s of h o s p i t a l i z a t i o n on t h e i r i l l c h i l d r e n , they lend support to the interpretation of the data i n the current study. The parents who p a r t i c i p a t e d i n the present study explained the ramifications of h o s p i t a l i z a t i o n i n terms of the d i f f i c u l t i e s they experienced which, i n many instances, were associated with changes i n the behaviour of the i l l c h i l d r e n . As w e l l , Burton's f i n d -ings r e i n f o r c e the importance of parents' r o l e i n protecting t h e i r c h i l d r e n which was so c l e a r l y stated by parents i n the current study. It i s d i f f i c u l t to determine i n the studies c i t e d from the l i t e r a t u r e whether the i n c l u s i o n or exclusion of h o s p i t a l i z a t i o n as an important factor i n the i l l n e s s experience rests on the researchers' construction of t h e i r interview guides. A l l of the studies used structured questionnaires which may ind i c a t e that the researchers predetermined the areas of the i l l n e s s experience to .be explored. However, as previously stated, t h i s is d i f f i c u l t to ver i f y as the questionnaires were not published. 83 As previously stated, Burton's study i s the only one that gives d i r e c t support to the f i n d i n g that h o s p i t a l i z a t i o n i s an important facet of the parents' experience with chronic childhood i l l n e s s . The parents who p a r t i c i p a t e d i n the current study explained that h o s p i t a l i z a t i o n i s s i g n i f i c a n t to the i l l n e s s experience because i t i s a frequently repeated aspect of i l l n e s s management. I t i s apparent from the studies c i t e d that the research re l a t e d to family experience with chronic childhood i l l n e s s i s l i m i t e d and has not been directed at a systematic exploration from the parents' perspec-t i v e . In addition, the studies have not focused on h o s p i t a l i z a t i o n as a facet of the chronic i l l n e s s experience. However, the data that are a v a i l a b l e tend to support the findings that parents view the h o s p i t a l i z a t i o n of t h e i r c h r o n i c a l l y i l l c h i l d within the context of the ongoing i l l n e s s experience and that h o s p i t a l i z a t i o n may have a s i g n i f i c a n t impact on the tr a j e c t o r y of the i l l n e s s experience which extends beyond the period of admission to h o s p i t a l . Interface with the Bureaucracy  Acquiring Information This study found that during times of h o s p i t a l i z a t i o n , parents i n t e r f a c e between the bureaucracy and t h e i r c h r o n i c a l l y i l l c h i l d r e n f or the purpose of mediating the children's i l l n e s s experiences. In order to orient themselves to the bureaucratic s e t t i n g and to gain an understanding of how the h o s p i t a l i z a t i o n i s : l i k e l y to progress, parents require information that i s honest, complete, straightforward, and d i r e c t l y related to t h e i r perspective of the c h i l d ' s i l l n e s s . Unfortunately, the bureaucracy poses some major d i f f i c u l t i e s f o r parents i n terms of acquiring information. The p a r t i c i p a n t s i n t h i s study explained that i t i s d i f f i c u l t to e l i c i t information from physicians and nurses are not considered to be primary information sources. Parents vary i n t h e i r approach toward acquiring information. A l l of the parents who p a r t i c i p a t e d i n the current study a c t i v e l y sought information; however, t h i s did not n e c e s s a r i l y mean that t h e i r i n t e r a c t i o n s with health professionals were ac t i v e i n t h i s regard. For example, some parents used an intermediary such as a r e l a t i v e to tr a n s l a t e information into understandable terms. The data give evidence that acquiring information i s an ongoing concern for a l l parents of c h r o n i c a l l y i l l c h i l d r e n regardless of how knowledgeable they are about the children's diseases .because the associated i l l n e s s problems are c o n t i n u a l l y changing. Several studies explore the issues associated with parental need f o r information about t h e i r c h i l d ' s chronic i l l n e s s and w i l l be discussed below. Hayes Morris, et a l . (1982) conducted a q u a l i t a t i v e research study of parents' h o s p i t a l r e l a t e d stress that was very s i m i l a r i n design to the current study. These researchers adapted Kleinman's (1977, 1978) framework for the purposes of t h e i r study and used in-depth interviewing with a semi-structured interview guide for data c o l l e c t i o n . Hayes Morris et a l . (1982) "sought stress information concerning d e s c r i p t i o n (patho-physiology), cause ( e t i o l o g y ) , symptoms, degree of concern, and management" as w e l l as information leading to an understanding of "how parents managed t h e i r own s t r e s s " and " t h e i r perceptions of health team members' roles i n stress management" (p.2). Forty-two parents of c h i l d r e n hospit-a l i z e d with cancer or other long-term i l l n e s s e s p a r t i c i p a t e d i n the study. The interviews were tape recorded, transcribed, and systematically 85 analysed f o r content using the method of constant comparative a n a l y s i s . These researchers found that the p a r t i c i p a n t s were concerned about the q u a l i t y of i n f o r m a t i o n they r e c e i v e d . The parents explained that they need i n f o r m a t i o n which i s more d e t a i l e d , "more c l e a r l y presented, repeated more o f t e n , s t a t e d i n terms they understand, and o f f e r e d at times when they perceive they need i t " (p. 18). The parents who p a r t i c -i p a t e d i n the current study a l s o emphasized these p o i n t s i n t h e i r accounts; however, the'key f a c t o r from t h e i r point of view was r e c e i v i n g i n f o r m a t i o n that r e l a t e d to t h e i r experience w i t h i l l n e s s . In other words, the k i n d of i n f o r m a t i o n given i s c r i t i c a l to parents and more in f o r m a t i o n given from the p r o f e s s i o n a l p e r s p e c t i v e w i l l o f t e n not address the parents' needs. This i s supported by the authors' c o n c l u s i o n that "as s t a f f members we have one view of what parents need to know, and that they have another, d i f f e r e n t one" (Hayes M o r r i s , et a l . , 1982, p.21). L i k e the parents who p a r t i c i p a t e d i n the current study, the p a r t i c i p a n t s i n the study by Hayes M o r r i s et a l . (1982) saw themselves as mediators of t h e i r c h i l d r e n ' s experiences i n h o s p i t a l . The data i n both s t u d i e s r e v e a l that parents "need to understand i n order to f u l f i l l t h e i r r o l e s of mediator and i n t e r p r e t e r " (Hayes M o r r i s et a l . , 1982, p.19). In a d d i t i o n , the parents who p a r t i c i p a t e d i n both s t u d i e s viewed p h y s i c i a n s as the primary source of i n f o r m a t i o n w h i l e nurses were not seen as " f i r s t - l i n e e x p l a i n e r s " (Hayes M o r r i s et a l . , 1982, p.21). This i n d i c a t e s that nurses need to reevaluate t h e i r r o l e w i t h regard to p r o v i d i n g i n f o r m a t i o n p a r t i c u l a r l y i n l i g h t of t h e . f i n d i n g that parents' need f o r i n f o r m a t i o n i s o f t e n not met. F u r t h e r , the f i n d i n g s serve to emphasize that parents know what they r e q u i r e i n terms of i n f o r m a t i o n and q u i c k l y l e a r n which i n d i v i d u a l s w i l l best meet t h e i r needs. 86 Canam's (1980) exploratory, d e s c r i p t i v e study examined communication patterns i n eleven f a m i l i e s of children with c y s t i c f i b r o s i s and attempted to i d e n t i f y the guidance parents had received i n t a l k i n g about the i l l n e s s . Eleven mothers and two fathers were i n t e r -viewed using a semi-structured interview guide having both open ended and closed questions. The interviews were tape recorded, transcribed verbatim and the data analyzed using d e s c r i p t i v e s t a t i s t i c s . Canam found that many parents needed information about the disease i n order to understand the i l l n e s s and to reduce t h e i r fear of the unknown. In addi-t i o n , having information about the disease was c i t e d by parents as h e l p f u l i n f a c i l i t a t i n g t h e i r a b i l i t y to discuss t h e i r c h i l d ' s i l l n e s s . The parents were concerned about r e c e i v i n g information "from t h e i r point of view" but some parents found t h e i r a c q u i s i t i o n of information i n h i b i t e d by fear of asking questions. Canam's study addressed parents' perception regarding communication about t h e i r c h i l d ' s i l l n e s s and therefore does not deal with h o s p i t a l i z a t i o n . However i t seems that, i n general, adequate information has an impact on parents' understanding and a b i l i t y to cope with t h e i r c h i l d ' s i l l n e s s which one would expect to also be true of h o s p i t a l i z a t i o n as a facet of the i l l n e s s experience. In any event, the findings are congruent with those of the current study and r e i n f orce the view that common themes e x i s t among parents' experiences with chronic childhood i l l n e s s . Kupst et a l . (1976) were concerned that parents frequently misunderstood the medical information given to them about t h e i r c h i l d ' s condition and therefore designed a study to determine what parents wanted to know as w e l l as what they a c t u a l l y understood. Eighty-seven parents of c h i l d r e n under the age of fourteen and with congenital heart defects 87 p a r t i c i p a t e d i n the study. The study was w e l l c o n t r o l l e d and used standardized questionnaires to determine parents' short and long-term r e c a l l of medical information as well as open ended questions to e l i c i t the parents' perceptions regarding t h e i r needs for information. The researchers found that parents tend to "remember better those matters which involved them d i r e c t l y " (p.29).such as l i m i t a t i o n s i n physical a c t i v i t y , i n s t r u c t i o n about medication and treatment l i k e surgery. They tend not to r e c a l l the areas which are more concerned with academic c l i n i c a l information such as hemodynamics. These findings were true of both short and long-term r e c a l l which seems to i n d i c a t e that parents s e l e c t i v e l y attend to information that has d i r e c t implications f or t h e i r i l l n e s s experience. This i s congruent with Canam's (1980) f i n d i n g that parents want information relevant to t h e i r point of view and supports the f i n d i n g of the present study that information i s deemed important when i t r e l a t e s d i r e c t l y to the parents' experiences with t h e i r children's chronic i l l n e s s e s . Kupst et a l . (1976) also found that parents' reaction to information was influenced by previous experience which further substantiates the progressive nature of the i l l n e s s experience as depicted by a t r a j e c t o r y i n the current study. When the c h i l d ' s condition changed, the parents' anxiety seemed les s r e l a t e d to the condition than to the parents' psychological set. I f they anticipated hearing that surgery would be done soon, and were informed that the status had changed so surgery wasn't necessary, t h i s frequently disturbed them. In the l a t e r . i n t e r v i e w , they could not understand how the c a r d i o l o g i s t s could change t h e i r minds. I t seemed to us that they were looking f o r d e f i n i t e answers, were uncomfortable with uncertainty, and found i t d i f f i c u l t to accept a wait-and-see a t t i t u d e (p.29). This reaction i s understandable to the w r i t e r when viewed i n the l i g h t of the parents' ongoing experience with i l l n e s s . I t seems reasonable that 88 a change i n the c h i l d ' s medical condition which was unanticipated, incongruent with the parents' perception of t h e i r c h i l d ' s i l l n e s s and seemingly unrelated to t h e i r i l l n e s s experience would be d i f f i c u l t to understand and accept. For the parents, the only thing which appeared to have changed was the physician's mind, which underlines the importance of giving explanations that take the parents' experience into account. The open ended questions used i n the study by Kupst et a l . (1976) determined that the parents did not wish to t a l k to a nonmedical person who would explain medical information i n layman's language as they were a f r a i d the nonmedical person would not know enough to answer questions. The parents who p a r t i c i p a t e d i n the current study focused t h e i r need for information on d i r e c t contact with the physician which may have resulted from the same underlying concern. This implies that nurses are perceived i n the same category as nonmedical people which does seem to be the case i n the current study. Hewitt et a l . (1970) found that parents wished to receive information as soon as the physician suspected something was wrong with the c h i l d and that repeated explanations were required. The report also indicates that the parents were aware they needed to discuss t h e i r c h i l d ' s i l l n e s s but were frequently unable to i n i t i a t e the necessary i n t e r a c t i o n with physicians or to ask questions. This seems rel a t e d to the f i n d i n g of Kupst et a l . (1976) that parents wanted the physician to encourage questions. Both studies c i t e findings that are congruent with those of J . the current study regarding parental d i f f i c u l t i e s with acquiring informa-t i o n ; however, neither study examined the strategies parents use to get the information they need. The studies reviewed i n t h i s chapter r e l a t e to parents' experiences with d i f f e r e n t medical diagnoses at varying times throughout the i l l n e s s t r a j e c t o r y which suggests that a c q u i s i t i o n of information i s t y p i c a l l y an ongoing concern for parents of c h r o n i c a l l y i l l c h i l d r e n . I t i s also evident that many parents do not receive the information they perceive as necessary to t h e i r understanding of the i l l n e s s experience. Greater than 50% of the mothers who p a r t i c i p a t e d i n the study by Hewitt et a l . (1970) stated that they had not had t h e i r c h i l d ' s condition explained to them. This was also expressed by the parents i n the.current study who were early i n t h e i r i l l n e s s experiences. Several authors argue that many parents are p e r i o d i c a l l y overwhelmed during the course of the chronic i l l n e s s experience which i n h i b i t s t h e i r a b i l i t y to a c t i v e l y acquire information. Kupst et al.(1976) concluded that communication with parents would be enhanced i f t h e i r needs were anticipated by health professionals which i s c e r t a i n l y applicable to the present study. Burton's (1975) study found that the majority of parents who f e l t themselves not to be f u l l y informed regarding t h e i r c h i l d ' s i l l n e s s reported seeking information toward a more complete understanding. I n t e r e s t i n g l y , the majority of parents who did believe themselves to be f u l l y informed "continued to search subsequently on t h e i r own for further information" (p.55). Again, t h i s supports the findings of the studies previously c i t e d which suggest that a c q u i s i t i o n of information i s an i n t e g r a l facet of the i l l n e s s t r a j e c t o r y and i s directed at a broad understanding of the i l l n e s s experience. Further, t h i s i s consistent with the f i n d i n g of the current study that there i s always more for the parents to know and understand as the demands of the i l l n e s s change over time. To summarize, the research l i t e r a t u r e lends support to the findings of the present study that a c q u i s i t i o n of information i s i n t e g r a l to parents' understanding of t h e i r experience with chronic childhood i l l n e s s and the information that i s deemed important i s that which has d i r e c t implications f or t h e i r experience. It i s evident that parents' need for information i s a facet of coping with i l l n e s s and i s not uniquely related to the h o s p i t a l s e t t i n g . Parental strategies f or acquiring information were not discussed i n any of the reports c i t e d . I t i s apparent from data presented i n t h i s report that some parents approach the a c q u i s i t i o n of information very passively; that i s , they tend not to a c t i v e l y i n i t i a t e i n t e r a c t i o n with health professionals for the purpose of acquiring information. This might lead health professionals to think that the parent i s adequately informed which would be an erroneous assumption. Managing the Child's I l l n e s s Experience i n Hospital This study found that parents wish to mediate t h e i r children's int e r a c t i o n s with the h o s p i t a l bureaucracy for the purposes of protecting the c h i l d r e n and normalizing t h e i r experiences i n h o s p i t a l . Some parents take an a c t i v e c o n t r o l l i n g stance where they focus on manipulating the c h i l d -ren's ph y s i c a l environment, which was usually explained i n terms of i n i t i a t i n g , coordinating and providing care. Other parents focus on c o n t r o l l i n g t h e i r own a f f e c t i n order to p o s i t i v e l y influence the c h i l d -ren's emotional environments; that i s , strengthen the children's own a b i l i t y to cope. This was termed a passive pattern of c o n t r o l because these parents are passive i n t h e i r i n t e r a c t i o n s with health professionals yet s t i l l manage to control one aspect of t h e i r children's experiences 91 i n h o s p i t a l . As the implications of c h r o n i c i t y become c l e a r , i n terms of the l i k e l i h o o d of frequently repeated h o s p i t a l i z a t i o n , many parents become more active and a s s e r t i v e i n c o n t r o l l i n g t h e i r children's experiences i n h o s p i t a l . There i s l i t t l e research l i t e r a t u r e pertaining to^parents' management of t h e i r c h r o n i c a l l y i l l c h i l d ' s p e r i o d i c h o s p i t a l i z a t i o n s ; however, the studies of h o s p i t a l i z a t i o n for "usually w e l l " c h i l d r e n are useful for comparison purposes. Most of the studies deal with the e f f e c t s of h o s p i t a l i z a t i o n on the c h i l d r e n involved and w i l l be used to explain and:, r e i n f o r c e the perceptionsJof the parents who p a r t i c i p a t e d i n the current study. Vaughan (1957) conducted one of the early experiments aimed at evaluating the impact of providing c h i l d r e n with s p e c i a l information during h o s p i t a l i z a t i o n . Forty c h i l d r e n between the ages of two and nine, admitted to h o s p i t a l for strabismus r e p a i r and who had no previous h o s p i t a l -i z a t i o n s , p a r t i c i p a t e d i n the study. L i t t l e i s explained i n the report about the methodology, which included a p r e - h o s p i t a l i z a t i o n interview with parents to assess and c l a s s i f y the c h i l d ' s behaviour, as w e l l as behavioural observations of the c h i l d r e n post-operatively by nurses and p o s t - h o s p i t a l i z a t i o n by parents. The intervention for the 20 c h i l d r e n i n the experimental group was an interview on the f i r s t , t h i r d and f i f t h h o s p i t a l days which attempted to give them information and address concerns. The researcher found a lower incidence of behavioural disturbance among the c h i l d r e n who had received s p e c i a l information. However, the r e s u l t s may have been related to the presence of a caring adult rather than s o l e l y to the giving of information as t h i s study was conducted at a time when parent p a r t i c i p a t i o n i n h o s p i t a l was very r e s t r i c t e d . Notwithstanding, 92 i t seems that the support of a caring adult, even one who was unfamiliar to the c h i l d , p o s i t i v e l y influenced the children's responses to h o s p i t a l -i z a t i o n . This substantiates the conviction of the parents who p a r t i c i p a t e d i n the current study that t h e i r presence p o s i t i v e l y influenced the children's experiences. That health professionals often disregard the c h i l d ' s i l l n e s s experience i s supported by the q u a l i t a t i v e data presented from the i n t e r -views with the c h i l d r e n : Unfamiliar and fri g h t e n i n g surroundings and si g h t s , and unsympathetic or thoughtless s t a f f , increase the stress for the c h i l d ; and i t was i n t e r e s t i n g that i n sp i t e of having an experienced and understanding s t a f f , much needless anxiety was caused by sudden changes i n the ward routine, unexpected i n v e s t i g a t i o n s , and a general f a i l u r e to t e l l the ch i l d r e n what was happening. There was a tendency to treat c h i l d r e n with l i t t l e regard for t h e i r personal privacy, and to forget that they may be aware of what i s going on around them, and wish to understand i t (Vaughan, 1957, p.1120). The data reveal that c h i l d r e n do need someone who i s aware and concerned about t h e i r i l l n e s s experience to mediate t h e i r i n t e r a c t i o n s i n h o s p i t a l . The parents who p a r t i c i p a t e d i n the current study emphasized that health professionals often do not appreciate the family's i l l n e s s experience i n h o s p i t a l . This i s reinforced by the quotation presented above. I t i s apparent that what health professionals consider to be normal routine may be very d i s r u p t i n g to both the h o s p i t a l i z e d c h i l d and his/her parents. Brain and Maclay (1968) were concerned that many of the generally agreed upon aspects of the h o s p i t a l i z a t i o n of ch i l d r e n had not been systematically examined and substantiated. As such, they designed a study for the purpose of determining the impact of maternal presence on children's responses to h o s p i t a l i z a t i o n . One hundred and ninety seven c h i l d r e n p a r t i c i p a t e d i n t h i s w e l l c o n t r o l l e d study, with the experimental group comprised of 101 c h i l d r e n admitted to h o s p i t a l accompanied by t h e i r mothers and the control group of 96 c h i l d r e n admitted for the same type of e l e c t i v e surgery but without t h e i r mothers. The researchers found that the c h i l d r e n i n the experimental group exhibited a s i g n i f i c a n t l y better adjustment to h o s p i t a l i z a t i o n when compared to the c h i l d r e n i n the c o n t r o l group. However, the c r i t e r i a used i n the assessment of adjust-ment were not c l e a r l y stated i n the report thus making the f i n d i n g appear su b j e c t i v e l y derived. I t i s i n t e r e s t i n g to note that the c h i l d r e n of mothers who had a very strong desire to accompany t h e i r c h i l d r e n into h o s p i t a l but were unable to do so had a very high rate of emotional disturbance (85.7%); whereas the incidence of disturbance was r e l a t i v e l y low (46.7%)when the a t t i t u d e of the mother was more passive (p.279). This suggested to the researchers that mothers are often the best judges of whether or not t h e i r c h i l d r e n need them i n h o s p i t a l . The parents who p a r t i c i p a t e d i n the current study, as w e l l as the study by Hayes Morris et a l . (1982), argued strongly that they know t h e i r c h i l d r e n best which i s reinforced by Brain and Maclay's (1968) f i n d i n g s . I t i s evident that parents have a unique, h o l i s t i c view of t h e i r c h i l d ' s experience with i l l n e s s by v i r t u e of l i v i n g the experience with them. Health professionals can only understand t h i s experience by asking the parents. Certain constraints, highlighted by the two reports j u s t c i t e d , must be kept i n mind when examining the present study i n the context of e x i s t i n g research l i t e r a t u r e . The f i r s t i s that there i s very l i t t l e research that can be d i r e c t l y compared to the findings of the current study due to differences i n research methodologies. The second i s that f a m i l i e s with usually w ell c h i l d r e n have a very d i f f e r e n t e x p e r i e n t i a l X 94 background than do fam i l i e s with a c h r o n i c a l l y i l l c h i l d which means that the findings related to one group cannot be assumed to hold true f o r the other. Parents' h o l i s t i c perspectives of t h e i r children's chronic i l l n e s s experiences give them in s i g h t into the children's responses during h o s p i t a l i z a t i o n . This i s substantiated by Tesler and Savedra's (1981) study i n which they observed 33 school age ch i l d r e n h o s p i t a l i z e d for a s u r g i c a l procedure. They determined that c h i l d r e n use a v a r i e t y of coping strategies and that no two c h i l d r e n are a l i k e i n terms of s p e c i f i c responses. The researchers u t i l i z e d a protocol f o r coding and describing the c h i l d -ren's behaviours that" was unpublished, however adequately substantiated t h e i r findings with clear examples of behaviour. Tesler and Savedra (1981) concluded that parents are a good source of information regarding t h e i r c h i l d ' s usual coping strategies and thus may be h e l p f u l to nurses' understanding of the meaning of the c h i l d ' s behaviour i n hospital. This i s relevant to parents of a c h r o n i c a l l y i l l c h i l d i n that t h e i r perceptions of t h e i r c h i l d ' s behaviour i n h o s p i t a l are founded on an ongoing experience with i l l n e s s which may incorporate repeated h o s p i t a l i z a t i o n s . Again, t h i s r e l a t e s to the fi n d i n g of the current study that parents know t h e i r c h i l d r e n best as well as evidence that general strategies are developed f o r coping with i l l n e s s that are modified within the h o s p i t a l s e t t i n g . The parents are aware of the c h r o n i c a l l y i l l c h i l d ' s usual strategies and also have a background of h o s p i t a l i z a t i o n experience to substantiate t h e i r judgement. H i l l (1978) interviewed 18 mothers of h o s p i t a l i z e d c h i l d r e n regarding t h e i r desire to p a r t i c i p a t e i n t h e i r c h i l d ' s care. I t should be noted that the c h i l d r e n were not seriously i l l , unconscious or handicapped i n any way so the findings r e l a t e to mothers of usually w e l l c h i l d r e n . A structured interview guide was used and i t i s i n t e r e s t i n g to note that the mothers were asked to respond regarding w i l l i n g n e s s to p a r t i c i p a t e i n areas of care that did not pertain to t h e i r c h i l d at that time and may have been unfamiliar, such as gastrostomy feedings. The data suggest that mothers wish to p a r t i c i p a t e i n a l l aspects of t h e i r c h i l d ' s care which included comfort measures, a c t i v i t i e s of d a i l y l i v i n g and therapeutic measures. Many mothers also indicated that, when par-t i c i p a t i n g i n t h e i r c h i l d ' s care, they would l i k e the support of nursing s t a f f . This r e i n f o r c e s the findings of the present study that many mothers wish to be a c t i v e p a r t i c i p a n t s when t h e i r c h i l d i s i n h o s p i t a l and that mothers tend to view themselves as competent members of the health care team. As expected, the amount of p a r t i c i p a t i o n and s p e c i f i c areas of p a r t i c i p a t i o n desired by the mothers varied from i n d i v i d u a l to i n d i v i d u a l . This further supports the f i n d i n g of the current study that parents' desire to a c t i v e l y p a r t i c i p a t e i n t h e i r children.'s care varies and must be questioned by health professionals before a mutually s a t i s -factory plan of care can be developed. H i l l ' s (1978) data also suggest that many parents are w i l l i n g to do a wide v a r i e t y of tasks which are t r a d i t i o n a l l y considered the realm of nurses. The parents who p a r t i c i p a t e d i n the current study explained that they often knew of ways to do procedures which would e l i c i t the maximum amount of cooperation from the c h i l d with a minimum of discomfort. This might explain why the mothers i n H i l l ' s (1978) study expressed willingness to p a r t i c i p a t e i n tasks, such as gastrostomy feedings, which require a d d i t i o n a l t r a i n i n g . 96 Another of the very early exploratory studies (Prugh et a l . , 1953) attempted to c l a r i f y the nature of the e f f e c t s of a b r i e f rather than prolonged hospitaliza.tion upon c h i l d r e n and parents. Although t h i s was a comprehensive experiment i n v o l v i n g 100 c h i l d r e n , many aspects of data c o l l e c t i o n and analysis are unclear i n the report and appear un-systematic, therefore the findings should be viewed with reservation. The c o n t r o l group of f i f t y c h i l d r e n were i n h o s p i t a l under t r a d i t i o n a l management techniques which meant a parental v i s i t i n g period of two hours per week, while parents of the experimental group had u n r e s t r i c t e d v i s i t -ing p r i v i l e g e s and t h e i r involvement i n care was encouraged. Ninety-two percent of the chi l d r e n i n the unsupported group exhibited behaviour i n d i c a t i n g s i g n i f i c a n t d i f f i c u l t i e s i n adaptation to h o s p i t a l as opposed to 68% of the experimental group. However, somewhat s u r p r i s i n g l y , the frequency of parental v i s i t s was not found to co r r e l a t e with the c h i l d ' s adaptation. This led the researchers to conclude that the e f f e c t i n the experimental group was due to a combination of i n t e r a c t i n g factors and that the most important v a r i a b l e i n f l u e n c i n g the degree and nature of trauma the c h i l d experiences from h o s p i t a l i z a t i o n seems to be the q u a l i t y of the c h i l d ' s r e l a t i o n s h i p with h i s or her parents. The data suggest that when parents are allowed to determine t h e i r own v i s i t i n g p r a c t i c e s , they are able to support t h e i r c h i l d r e n such that adaptation to h o s p i t a l -i z a t i o n i s f a c i l i t a t e d . Again, t h i s supports the notion presented i n the current report that parents are aware of t h e i r children's needs and are able to e f f e c t i v e l y intervene i n r e l a t i o n to the needs. The data also substantiates the perceptions of parents who p a r t i c i p a t e d i n the current study that t h e i r need to take time away from the h o s p i t a l i z e d c h i l d r e n was not a major d i f f i c u l t y f o r them. I t i s apparent that parents develop 97 a v i s i t i n g schedule which accounts f o r t h e i r needs as well as the children's needs and attempts to balance them. The parents i n Burton's (1975) study saw t h e i r c h i l d r e n need-ing constancy and reassurance during times of h o s p i t a l i z a t i o n . This i s congruent with a fi n d i n g of the present study that some parents perceive t h e i r role i n managing t h e i r c h i l d ' s experience i n h o s p i t a l to rest on providing emotional support. Further, the parents who p a r t i c i p a t e d i n ': the current study were very concerned about providing consistent support to t h e i r c h i l d r e n . Regardless of the pattern of co n t r o l used, the parents' prime focus was on being dependable for t h e i r c h i l d p a r t i c u l a r l y when the experience became d i f f i c u l t . In addition, the parents i n Burton's study (1975) were concerned about s i t u a t i o n s where the c h i l d ' s normal routine was a l t e r e d but f e l t unable to intervene. Again, t h i s supports the current f i n d i n g that parents tend to perceive two ways of managing the c h i l d ' s i l l n e s s experience i n h o s p i t a l , which are: a passive pattern of control that focuses on emotional f a c t o r s , and, an active pattern that involves c o n t r o l l i n g environmental factors with a focus on maintaining the c h i l d ' s normal routines. Canam (1980) also found that, f or some parents, active p a r t i c i p a t i o n i n t h e i r c h i l d ' s h o s p i t a l i z a t i o n gave them a measure of con t r o l over the experience. In addition, some parents reported not sharing t h e i r f e e l i n g s with the i l l c h i l d because they f e l t the c h i l d could not cope with that information. This i s s i m i l a r to the strategy, u t i l i z e d by parents i n the current study, of masking t h e i r true a f f e c t i n order to provide p o s i t i v e emotional support for the i l l c h i l d . McCollum and Gibson (1970) found that the parents who avoided giving information to t h e i r s i c k c h i l d were protecting themselves rather than s h i e l d i n g the c h i l d . Apparently, the parents were a f r a i d of being unable to answer t h e i r c h i l d ' s questions. This serves to i l l u s t r a t e the complexity of factors i n f l u e n c i n g parental responses and that the meaning of the response i s l i k e l y to vary from parent to parent., Again, t h i s reinforces a point made i n the current study, that health profes-sionals cannot assume to understand parents' perspectives regarding chronic i l l n e s s . Only by asking the parents f o r t h e i r perceptions can understanding be gained. To summarize the studies c i t e d , the data show that emotional support i s something a l l parents can give to t h e i r h o s p i t a l i z e d , c h r o n i c a l l y i l l c h i l d r e n whereas manipulating the environ-ment i s often more d i f f i c u l t to accomplish. A large proportion (44%) of the parents Iri Burton's study did not v i s i t t h e i r c h i l d i n h o s p i t a l on a d a i l y b a s i s . This may have been the r e f l e c t i o n of an atmosphere that did not encourage parent par-t i c i p a t i o n and could explain why so many parents had d i f f i c u l t y with i: taking active c o n t r o l i n the s i t u a t i o n . I t i s apparent that changing health care attitudes are now r e s u l t i n g i n greater encouragement of parents who wish to p a r t i c i p a t e i n t h e i r hospitalized, c h i l d ' s care and may explain, why most of the parents i n the current study f e l t able to take a more act i v e r o l e i n c o n t r o l l i n g t h e i r children's experiences i n h o s p i t a l . Several researchers have found that parents are very concerned about t r e a t i n g t h e i r c h r o n i c a l l y i l l c h i l d normally (Anderson, 1981; Canam, 1980; Hewitt et a l . , 1970; King, 1981; K r u l i k , 1980) and that h o s p i t a l i z a t i o n negatively influences maintenance of normal routine (Burton, 1975; Prugh et a l . , 1953). This i s congruent with the findings 99 of the current study and indicates that normalization i s an ongoing concern f o r parents of a c h r o n i c a l l y i l l c h i l d rather than a problem uniquely associated with h o s p i t a l i z a t i o n . Anderson (1981) c o l l e c t e d ethnographic data from four f a m i l i e s with a c h r o n i c a l l y i l l c h i l d being cared for i n the home. The method of p a r t i c i p a n t observation was used to explore how the c h i l d ' s sickness was understood and des-cribed by the parents within the context of everyday s o c i a l i n t e r a c t i o n s . Anderson found that the parents understood the medical implications of t h e i r c h i l d ' s i l l n e s s and knew that the c h i l d was not normal but set those considerations aside i n an attempt to normalize the experience. Like Burton (1975) the researcher found a d i s p a r i t y between what the parents hoped to achieve i n terms of c h i l d rearing and what a c t u a l l y occurred. I t appears that the difference i s a r e s u l t of valuing normalization on the one hand and acknowledging the r e s t r i c t i o n s that are dictated by t h e i r understanding of sickness on the other. Anderson explained that within the context of chronic childhood i l l n e s s , "normal" becomes semantically defined which allows f o r minimization of differences but does not permit the c h i l d to be "normal" i n the everyday sense. This i s s i m i l a r to the find i n g of the current study that h o s p i t a l i z a t i o n becomes semantically defined as a "normal" facet of routine j u s t as chronic i l l n e s s becomes a "normal" part of day-to-day l i v i n g . The semantic d e f i n i t i o n s f a c i l i t a t e the adjustments that are required by the c h i l d ' s i l l n e s s . Prugh et a l . (1953) found that the parents of usually w e l l c h i l d r e n frequently exhibited "marked ambivalence i n the face of behavioural regression on the part of the c h i l d , e i t h e r during or 100 following h o s p i t a l i z a t i o n " (p.98). The parents who p a r t i c i p a t e d i n the current study were also ambivalent about t h e i r children's behavioural regression i n h o s p i t a l which they viewed i n terms of disrupted "normal" behaviour as a r e s u l t of alte r e d routine. They were concerned about maintaining the c h i l d ' s usual behaviour but had d i f f i c u l t y s e t t i n g the usual l i m i t s due to the constraints of the s e t t i n g as w e l l as uncertainty about what was reasonable to expect when the c h i l d was s i c k . I t i s apparent that these parents perceive t h e i r children's i l l n e s s status to be alte r e d during times of h o s p i t a l i z a t i o n . Thus, j u s t l i k e any parent with a sic k c h i l d , the parents had l o s t some of t h e i r usual landmarks regarding t h e i r children's behaviour and were unsure about s e t t i n g l i m i t s . However, i t i s also evident that t r y i n g to a t t a i n .'some sort of a normal l i f e f o r t h e i r c h i l d r e n i s a much greater issue f o r parents of a c h r o n i c a l l y i l l c h i l d than f o r parents of a usually w e l l c h i l d . This i s because of the l i m i t a t i o n s imposed by long-term i l l n e s s as w e l l as the di s r u p t i o n of repeated h o s p i t a l i z a t i o n s . K r u l i k (1980) interviewed mothers of 20 c h i l d r e n with chronic l i f e - t h r e a t e n i n g i l l n e s s e s . The researcher used an extensive structured interview schedule and reported the t a c t i c s perceived as being success-f u l i n reducing the c h i l d ' s f e e l i n g of being d i f f e r e n t . Although not e x p l i c i t i n the report, i t i s apparent that normalization was not being defined i n terms of common sense usage i n that the aim was not to treat the c h i l d "as normal." Instead, the mother's str a t e g i e s were geared at two t a r -gets; one toward strengthening the resources and coping a b i l i t i e s of the child 101 and the second towards a l t e r i n g the environment to compensate and accept the child 1' (p.575). These are s i m i l a r to the two targets behind the strategies used by parents i n the present study to manage the c h i l d ' s i l l n e s s experience i n h o s p i t a l . The strategies involved i n r e l a t i o n to passive control were aimed at providing emotional support to strengthen the ch i l d ' s own resources whereas the a c t i v e c o n t r o l l i n g s t r a t e g i e s were aimed at a l t e r i n g the environment. Normalization was one of the purposes f o r using these s t r a t e g i e s i n h o s p i t a l . Hewitt et a l . (1970) found that mothers of handicapped c h i l d r e n follow c h i l d rearing patterns s i m i l a r to those used by mothers of w e l l c h i l d r e n but make common sense modifications i n response to the r e a l i t i e s of the c h i l d ' s i l l n e s s . The mothers i n the study "said many times they tr y to bring up t h e i r handicapped c h i l d r e n i n the same way as the normal ch i l d r e n as much as they possibly can" (p.87). This i s congruent with the f i n d i n g of the present study that parents wish t h e i r c h i l d r e n to achieve the greatest degree of normal functioning possible within the constraints of t h e i r s i t u a t i o n . The p a r t i c i p a n t s i n t h i s study explained that t r y i n g to achieve and maintain the normal milestones i n t h e i r children's development i s a struggle and that setbacks are always experienced a f t e r incidents of h o s p i t a l i z a t i o n . None of the studies addressed the fi n d i n g presented i n the current report that parents oc c a s i o n a l l y wish to give up some of the r e s p o n s i b i l i t y for managing t h e i r children's chronic i l l n e s s and so temporarily r e l i n q u i s h c o n t r o l to health professionals i n the h o s p i t a l s e t t i n g . This lack of data i s understandable given that the studies pertaining to h o s p i t a l i z a t i o n focus on usually w e l l c h i l d r e n . However, Hewitt et a l . (1970) found that 102 parents desire breaks from t h e i r c h r o n i c a l l y i l l c h i l d r e n but are often unable to f i n d someone who i s competent and w i l l i n g to care for the c h i l d , even among family and close f r i e n d s . This suggested to the writ e r that the parents' need for r e l i e f from the r e s p o n s i b i l i t y of managing the c h i l d ' s i l l n e s s on a d a i l y basis may be perceived as greater than the child's heed for parental support during h o s p i t a l i z a t i o n which would explain why some parents absent themselves from the h o s p i t a l s e t t i n g . In other words, the "time outs" taken by some parents may not simply/be a f a c t o r of coping with h o s p i t a l i z a t i o n but may be due to the emotional overload of h o s p i t a l i z a t i o n i n addition to long-term management of i l l n e s s without breaks from r e s p o n s i b i l i t y . Modifying the Emotional Impact of H o s p i t a l i z a t i o n f or Self I t i s apparent from the data i n the present study that h o s p i t a l i z a -t i o n of a c h r o n i c a l l y i l l c h i l d has a s i g n i f i c a n t emotional impact on the parents. The accounts i n d i c a t e that parents are s e l f aware and s e l f r e l i a n t i n terms of the st r a t e g i e s they use to cope with the emotional load associa-ted with t h e i r children's h o s p i t a l i z a t i o n s . There i s scant research literature pertaining to the emotional impact of a c h i l d ' s h o s p i t a l i z a t i o n on the parents, as the primary focus of i n t e r e s t seems to have been the e f f e c t s on the c h i l d . However, Hewitt et a l . (1970), i n discussing the impact of a long-term i l l n e s s experience, recognized that " i t i s i n the context of her own f e e l i n g s and her own family circumstances that the mother's response to the fa c t that she has a handicapped c h i l d must be unique" (p.196). The researchers also concluded that no s p e c i f i c handicap brings a unique set of problems to the family and that the manner i n which the 103 family copes does not d i f f e r s i g n i f i c a n t l y from patterns evident i n fam i l i e s with usually w e l l c h i l d r e n . This supports the findings of the current study that each parent's understanding and explanation of his/her c h i l d ' s i l l n e s s i s unique, s o c i o c u l t u r a l l y derived, and serves to guide health behaviour. However, the i l l n e s s problems experienced by these fam i l i e s f a l l i nto common categories with the shared bond being chron-i c i t y . Further, the present study found common stra t e g i e s used by parents i n coping with the emotional impact of having a c h i l d i n h o s p i t a l . Con-gruent with the findings of Hewitt et a l . (1970), the strategies appear to be those used i n everyday l i f e management of emotionally d i f f i c u l t s i t u a t i o n s . The p a r t i c i p a n t s i n the current study explained that the str a t e g i e s used i n h o s p i t a l are consistent with t h e i r s trategies f or man-aging the children's i l l n e s s e s i n the home. Canam (1980) and P.rugh et a l . (1953) found that a c t i v e p a r t i c i -pation i n t h e i r children's care was a useful coping mechanism for parents i n managing t h e i r own anxieties and fears as well as those belonging to the c h i l d r e n . This was evident i n the accounts of the parents who par-t i c i p a t e d i n the current study; however, t h e i r explanations concentrated on benefits to the ch i l d r e n rather than benefits to themselves. The data suggest that whatever the parents could do, was done for the ben e f i t of the c h i l d , but also allowed them some r e l i e f of anxiety i n that they were able to focus t h e i r concerns and achieve some p o s i t i v e r e s u l t s . The mothers i n Burton's study (1975) found h o s p i t a l i z a t i o n d i f f i c u l t to manage when they were forced to choose between being with the i l l c h i l d and being home with the we l l s i b l i n g s ; however, the report provided no further discussion of the decisions made by the mothers to 104 resolve the issue. This was a dilemma that faced most of the mothers i n the current study which they resolved by choosing to be with the i l l c h i l d and required them to set aside t h e i r concerns for the w e l l s i b l i n g s i n order to minimize conflicting_emotions. A few mothers i n Burton's study (1975) f e l t "that by.-handing the c h i l d ' s care over to the nurse, they were f a i l i n g i n t h e i r own maternal duties" (p.107) which apparently resulted i n resentment toward the nursing s t a f f . Burton's (1975) data suggest that for some parents who have assumed the day-to-day r e s p o n s i b i l i t y of managing t h e i r children's i l l n e s s e s , lack of p a r t i c i p a t i o n while t h e i r c h i l d r e n are i n h o s p i t a l has negative emotional e f f e c t s . This was not expressed by mothers i n the present study and may r e l a t e to the fa c t that changing trends i n p e d i a t r i c care have created a more accepting a t t i t u d e towards parents who wish to p a r t i c i p a t e i n t h e i r children's care i n h o s p i t a l . Burton (1975) concluded that h o s p i t a l i z a t i o n of the c h i l d activates or re-activates parental fears and that simply being with the c h i l d i s help-f u l to parents' coping. Again, t h i s i s congruent with findings of the pre-sent study. However, as previously discussed, the parents who p a r t i c i p a t e d i n the current study expressed some ambivalence about being with t h e i r c h i l d r e n i n h o s p i t a l . The accounts predominantly focused on parents' need to be with t h e i r c h i l d r e n but also illuminated parents' occasional need to get away from the ch i l d r e n and the h o s p i t a l . These c o n f l i c t i n g needs seem to be a facet of the i l l n e s s experience rather than uniquely associated with h o s p i t a l i z a t i o n but were not addressed i n Burton's (1975) report. Several studies discuss the a b i l i t y of parents to support other parents. Canam (1980), Hayes Morris et a l . (1982), and McCollum and Gibson (1970) found that parents c i t e being with other parents as h e l p f u l 105 i n reducing the sense of i s o l a t i o n and i n a s s i s t i n g understanding of the i l l n e s s experience. However, some researchers found that being with other parents was. of minimal help because the encounters highlighted the parents' shortcomings and maximized the sharing of anxieties (Burton, 1975) or gave parents i n s i g h t into the future progress of t h e i r i l l n e s s experience which they found depressing (Lonsdale, 1978). Canam (1980) was the only researcher to d i f f e r e n t i a t e the findings between t a l k i n g to parents on an i n d i v i d u a l basis and p a r t i c i p a t i o n i n parent groups. The data suggest that many parents do not f i n d groups h e l p f u l for the reasons discussed from the two previous-l y c i t e d studies. The lack of d i f f e r e n t i a t i o n between data pertaining to parents' perceptions of t h e i r contacts with other parents on an i n d i v i d u a l versus group basis may explain the inconsistent findings presented i n the l i t e r a t u r e . The data i n the present study give evidence that parents f i n d contact with other parents on an i n d i v i d u a l basis to be h e l p f u l . Further, the parents stated that they come together n a t u r a l l y with other parents and that assistance from health professionals i s not h e l p f u l . This reinforces the fi n d i n g that parents are able to use t h e i r resources to best meet t h e i r needs. Lonsdale (1978) interviewed parents i n 60 fa m i l i e s having a handicapped c h i l d regarding family l i f e with a c h r o n i c a l l y i l l c h i l d . A structured questionnaire was used and the data were presented i n terms of d e s c r i p t i v e s t a t i s t i c s which were i l l u s t r a t e d with verbatim quotations. No information was presented i n the report on the construction or content of the questionnaire. The findings of Lonsdale (1978), Burton (1975) and Canam (1980) are based on interviews with parents who were managing t h e i r c h i l d ' s i l l n e s s 106 at home. Perhaps being with other parents, p a r t i c u l a r l y i n the group s i t u a t i o n , placed too much focus on the i l l n e s s at a time when i t was being managed w e l l i n terms of day-to-day l i f e . This i s supported by Lonsdale's (1978) f i n d i n g that most parents went out to be with "normal people" so they could forget the handicap for awhile. The parents who p a r t i c i p a t e d i n the present study expressed both a need to share t h e i r experience with other parents i n a s i m i l a r s i t u a t i o n and a need to get away, which i s consistent with Lonsdale's (1978) data. I t i s evident that sometimes being with other parents i s h e l p f u l and sometimes i t i s not. This i s further substantiated by the work of Hayes Morris et a l . (1982) who found that being with other parents sometimes adds to the stresses of h o s p i t a l i z a t i o n . These authors state that "sharing problems, fears and concerns can become a major source of stress because parents become involved with each others' c h i l d -ren and t h e i r progress" (p.15). Although t h i s was not expressed by the parents i n the current study t h i s might explain some parents' need for "time outs" from the h o s p i t a l s e t t i n g . M i r r o r i n g has been discussed by Kikuchi (1977) i n a paper written on the basis of observations the author made while working as a c l i n i c a l nurse s p e c i a l i s t with leukemic c h i l d r e n . Although t h i s concept has not been substantiated through systematic research i t seems a u s e f u l way of explaining a facet of the r e l a t i o n s h i p that occurs between parents of si c k c h i l d r e n i n h o s p i t a l . Kikuchi (1977) observed that c h i l d r e n get information by mirroring themselves against other c h i l d r e n who look l i k e them and receive s i m i l a r treatment. The informa-t i o n seemed to enable the ch i l d r e n to cope more e f f e c t i v e l y with t h e i r i l l n e s s by reducing uncertainty and providing guidelines for managing d i f f i c u l t s i t u a t i o n s . Vaughan (1957) described the behaviour among ho s p i t a l i z e d c h i l d r e n t h i s way: "the ch i l d r e n were intensely aware of t h e i r r e l a t i o n s h i p s with each other, and compared themselves i n terms of bravery" (p.1119). The parents who p a r t i c i p a t e d i n the present study u t i l i z e d a s i m i l a r mirroring process for two purposes: to r e i n f o r c e t h e i r own sense of coping w e l l ; and, to minimize the seriousness of t h e i r s i t u a t i o n . As Lonsdale (1978) reports, a common parental reaction to l i f e with a c h r o n i c a l l y i l l c h i l d i s the sense that i t could always be worse, which i s consistent with Burton's (1975) f i n d i n g that parents appreciate t h e i r own s i t u a t i o n a f t e r seeing the s i t u a t i o n s of other parents. The p a r t i c i p a n t s i n the present study were c a r e f u l i n choosing other parents so that t h e i r own s i t u a t i o n always seemed les s d i f f i c u l t to manage. Burton (1975) and Canam (1980) were consistent i n t h e i r f i n d i n g that parents of c h r o n i c a l l y i l l c h i l d r e n tend not to communicate f u l l y with friends and r e l a t i v e s for a v a r i e t y of reasons such as: desire not to worry family and f r i e n d s ; r e a l i s t i c discussion was d i f f i c u l t because the threatening aspects of the c h i l d ' s i l l n e s s made friends and r e l a t i v e s too uncomfortable; and, discussion was not h e l p f u l because friends and r e l a t i v e s did not r e a l l y understand the s i t u a t i o n . This i s also true of the parents who p a r t i c i p a t e d i n the current study. Further, the p a r t i c i - / pants explained that because friends and r e l a t i v e s often did not have fi r s t h a n d experience with the i l l c h i l d r e n t h e i r questions were u n r e a l i s t i c and acted to r e i n f o r c e the parents' fears and f r u s t r a t i o n s . The parents found t h i s upsetting and so tended to avoid discussing t h e i r s i t u a t i o n with people who were not i n touch with the i l l n e s s experience. This may also explain why parents do not c i t e health professionals as h e l p f u l to t a l k to about t h e i r i l l n e s s experiences i n h o s p i t a l . The data suggest that health pro f e s s i o n a l s , as a r e s u l t of t h e i r focus on explaining i l l -ness i n terms of disease, are not i n touch with the parents' i l l n e s s experiences. This f i n d i n g has not been addressed by any of the studies c i t e d . Three studies c i t e some form of "thought blocking" as a strategy u t i l i z e d by parents f o r coping with chronic childhood i l l n e s s (Burton, 1975; Lonsdale, 1978; McCollum & Gibson, 1970). This i s congruent with the strategy of s e l e c t i v e i n a t t e n t i o n used by parents i n the present study and further indicates that t h i s coping pattern i s t y p i c a l of the experience rather than a unique response to a p a r t i c u l a r s i t u a t i o n . Many of the p a r t i c i p a n t s i n the current study explained that they manage the emotional load associated with t h e i r children's h o s p i t a l i z a t i o n s by focusing on immediate, known concerns and s e t t i n g aside those that do not p e r t a i n to the s i t u a t i o n at hand. The parents used hope to maintain an o p t i m i s t i c outlook when information from t h e i r experiences d i f f e r e d from bio-medical information. For example, one mother whose baby began to smile took t h i s as a hopeful sign that the baby was not as severely b r a i n damaged as the physicians indicated. Burton (1975) describes parents' coping behaviours i n a way that i s applicable to the p a r t i c i p a n t s i n the current study: Many parents practiced an i n s t i n c t i v e form of thought blocking -eith e r d e l i b e r a t e l y switching t h e i r thoughts to something more hopeful, counting t h e i r b lessings, or getting out and about u n t i l they forgot; Despite a l l the personal d i s t r e s s - attendant on t h e i r c h i l d ' s handicap, most parents function e f f e c t i v e l y , curbing t h e i r own negative emotions, mobilising hope and maintaining a sense of personal worth (p.226). 109 Relationships i n the Hospital Setting The Relationship between Parent and Sick C h i l d The current study found that an intense bond e x i s t s between parents and t h e i r c h r o n i c a l l y i l l c h i l d r e n which i s often i n t e n s i f i e d during times of h o s p i t a l i z a t i o n . This bond provided the impetus f o r parents' protective role and thus, directed much of t h e i r behaviour i n h o s p i t a l . Several studies address the e f f e c t s of h o s p i t a l i z a t i o n on the p a r e n t - i l l c h i l d r e l a t i o n s h i p (Burton, 1975; Canam, 1980; Hayes Morris et a l . , 1982; MacCarthy et a l . , 1962) and have findings which support those of the current study. Burton (1975) found that the days spent i n h o s p i t a l together "generally had a very p o s i t i v e e f f e c t on the r e l a t i o n s h i p of parent and c h i l d , and consequent f e e l i n g s of closeness were accentuated" (p.107). This i s supported by Anderson's study (1981) which found intense mother-si c k c h i l d i n t e r a c t i o n patterns i n fa m i l i e s having a c h r o n i c a l l y i l l c h i l d . The i n t e n s i t y of the r e l a t i o n s h i p was evidenced by an account which explained that a l l of the mother's time and energy was devoted to the i l l c h i l d during times of h o s p i t a l i z a t i o n which was also expressed by pa r t i c i p a n t s i n the current study. Some of the parents i n the current study explained that during h o s p i t a l i z a t i o n , they share a s p e c i a l world with t h e i r i l l c h i l d r e n that i s quite separate from t h e i r l i f e outside the h o s p i t a l . Hayes Morris et a l . (1982) point out that because t h i s s p e c i a l bond "influences the parents' perceptions of the h o s p i t a l i z a t i o n experience, an understanding of the depth of the parents' emotional t i e s with t h e i r c h i l d r e n and perceptions of t h e i r r o l e as parents i s necessary i n order to appreciate the extent and nature of adaptations required during t h e i r 110 children's h o s p i t a l i z a t i o n s " (p.5)': The intense parent-sick c h i l d r e l a t i o n s h i p s that seem t y p i c a l of f a m i l i e s with a c h r o n i c a l l y i l l c h i l d may be r e l a t e d to a sense of the c h i l d being vulnerable. Levy (1980) interviewed 750 parents i n the waiting areas of f i v e general p e d i a t r i c f a c i l i t i e s "to explore t h e i r perspectives on how and why they chose the programs they use, and t h e i r assessments of t h e i r children's health status" (p.956). The interviewer used a structured guide comprised of open-ended questions. I t was apparent a f t e r the i n i t i a l 56 interviews that v u l n e r a b i l i t y was a recurrent concern i n that "some parents f e l t p a r t i c u l a r c h i l d r e n to be e s p e c i a l l y endangered or threatened by i l l n e s s " (p.956) so a question which addressed vulnera-b i l i t y was added. Categories that encompassed the range of explanations parents gave for t h e i r perceptions were developed from the verbatim accounts. Two hundred c h i l d r e n were seen as vulnerable by t h e i r parents and of these, 60% were deemed medically vulnerable based on c l i n i c a l grounds. In other words, both the parents and the medical establishment perceived the c h i l d to be vulnerable regardless of actual presenting concern. It i s i n t e r e s t i n g to note that t h i s congruent perception of v u l n e r a b i l i t y was most frequently associated with c h i l d r e n having a h i s t o r y of chronic i l l n e s s . Thus, the data suggest that for some parents of c h r o n i c a l l y i l l c h i l d r e n there i s an ever-present concern of v u l n e r a b i l i t y which overrides the c h i l d ' s a c t u a l state of health at any given point i n the t r a j e c t o r y . The parents who p a r t i c i p a t e d i n the present study expressed a great deal of concern about t h e i r children's increased s u s c e p t i b i l i t y to acute i l l -ness and worried about what the c h i l d r e n might catch as a r e s u l t of being i n h o s p i t a l . This may be explained by the notion of v u l n e r a b i l i t y and by the r e i n f o r c i n g experiences of "things going wrong" during past h o s p i t a l -I l l i z a t i o n s . The parents' response to concerns regarding possible negative repercussions of h o s p i t a l i z a t i o n on t h e i r children's health was to become v i g i l a n t i n t h e i r p r o t e c t i v e r o l e . Like the parents who p a r t i c i p a t e d i n Levy's (1980) study, i t i s evident that these parents may be perceived by health professionals to over-react to circumstances at hand as a r e s u l t of a heightened sense of the children's v u l n e r a b i l i t y . * The Parents' Relationships with Health Care Professionals The current study found that parents' r e l a t i o n s h i p s with health care professionals are a meaningful aspect of t h e i r i l l n e s s experiences i n h o s p i t a l . I t i s evident that parents have some in s i g h t into the d i f -ferences between t h e i r perspectives regarding i l l n e s s and those of health pr o f e s s i o n a l s . However, the parents did not perceive that t h e i r viewpoint was s i m i l a r l y understood or appreciated by health p r o f e s s i o n a l s . This i s consistent with the f i n d i n g of Hayes Morris et a l . (1982) that the parents perceived they were given no opportunity to openly discuss t h e i r f e e l i n g s . On the whole, the parents who p a r t i c i p a t e d i n the current study were accept-ing of the professional perspective and were protective of health profes-sionals as a group. The research l i t e r a t u r e which s p e c i f i c a l l y addresses r e l a t i o n -ships between parents and health professionals seems to have a s i n g l e focus, that of the parent-physician r e l a t i o n s h i p (Kane, Leymaster, Olsen, Woolley & Fisher, 1974; K i r k p a t r i c k , Hoffman & Futterman, 1975; Kupst et a l . , 1976; Mulhern, Crisco & Camitta, 1981) and most r e l a t e to communica-t i o n . This bias seems a natural r e s u l t of the research being conducted by physicians. Hewitt et a l . (1970) found that continuity of the caring 112 r e l a t i o n s h i p was i n f l u e n t i a l i n determining the parents' s a t i s f a c t i o n with care. Many of the parents who p a r t i c i p a t e d i n the present study expressed the importance of a continuous r e l a t i o n s h i p with care givers and a few mentioned lack of continuity as a source of f r u s t r a t i o n ; how-ever, there was no evidence of d i r e c t l i n k s between lack of continuity and d i s s a t i s f a c t i o n with care. The fact that the parents were very protective of the health s t a f f may indic a t e a concern that the q u a l i t y of t h e i r c h i l d ' s care could be compromised i f they appeared c r i t i c a l or unappre-c i a t i v e . This i s supported by the f i n d i n g that some mothers i n the study by Hewitt et a l . (1970) were unwilling to seek a second opinion regarding t h e i r c h i l d ' s i l l n e s s f o r fear of offending the physician i n charge'—it was too great a r i s k . P o r t e r f i e l d ' s (1981) q u a l i t a t i v e study of medica-t i o n taking i n persons diagnosed as schizophrenic also found that c l i e n t s had reservations about questionning physicians or disagreeing but the underlying r a t i o n a l e was not discussed. The parents who p a r t i c i p a t e d i n the current study were reluctant to discuss t h e i r protective.stance toward health pr o f e s s i o n a l s , which may be a form, of s e l e c t i v e i n a t t e n t i o n . Thus, i n most instances, the parents refused to openly admit having concerns about t h e i r children's care i f they disagreed with the professional care givers. Many of the parents i n the present study made reference to f i g h t -ing f o r t h e i r c h i l d and seemed to reach a point where t h e i r r e l a t i o n s h i p s with health professionals were somewhat a d v e r s a r i a l . Hewitt.et a l . (1970) made t h i s statement i n r e l a t i o n to a p a r t i c u l a r account: This was not the only reference to the f e e l i n g that parents have to f i g h t f o r t h e i r c h i l d r e n , the f e e l i n g that doctors (arid other pr o f e s s i o n a l people) are opponents rather than a l l i e s , to be approached with a mixture of caution and militance rather than confidence (p.46). 113 Not s u r p r i s i n g l y , the researchers concluded that parents' perceptions of t h e i r r e l a t i o n s h i p with a health professional are influenced by the person's a b i l i t y to convey that s/he i s an a l l y working with the parents not against them. This was c e r t a i n l y evident i n the accounts of parents who p a r t i c i p a t e d i n the present study. Further, accounts suggest that an a l l y i s often someone who w i l l simply l i s t e n to the parents' perspec-t i v e s . K i r k p a t r i c k et a l . (1975) conducted a d e s c r i p t i v e study looking at factors i n the r e l a t i o n s h i p between parents and physicians which influence the development of t r u s t . The data base was 40 transcribed interviews with parents of c h i l d r e n having leukemia. However, the report provided no information regarding guidelines for the interviews or data analysis and few verbatim accounts were used to explicate the findings which led t h i s w r i t e r to view the study with reservation. The researchers found that t r u s t i n the physician was promoted when the parents were given c l e a r , d i r e c t information and that the parents wanted to know the physic, cian's suspicions.-:rather than waiting u n t i l things were known for c e r t a i n . The f i n d i n g that parents were concerned about the implications of admitting t h e i r c h i l d to a research h o s p i t a l indicates an awareness of the d i s -crepancy between t h e i r view of the c h i l d ' s i l l n e s s and the medical perspective. This was seen as i n h i b i t i n g t r u s t i n the physician. The researchers also interpreted hope as'refuting t r u s t ; that i s , i n hoping for miracles the parents were perceived as not t r u s t i n g the physician's judgement. I t appears that the data i n the study by K i r k p a t r i c k et a l . (1975) are presented from the physician's frame of reference rather than the parents' perspective. 114 The parents who p a r t i c i p a t e d i n the current study also expressed an understanding that health professionals often perceive the children's i l l n e s s e s as learning opportunities and were concerned about the implications i n terms of the children's i l l n e s s experiences. There was evidence that the p r a c t i t i o n e r s ' d i f f e r i n g perspective did negatively influence parents' r e l a t i o n s h i p s with i n d i v i d u a l health team members. However, the explanations usually focused on student nurses or student doctors. Again, t h i s supports the fi n d i n g that parents are unwilling to jeopardize t h e i r r e l a t i o n s h i p s with health professionals who are i n -f l u e n t i a l i n t h e i r children's care. The accounts do not give evidence that t r u s t i s generally i n h i b i t e d when parents have i n s i g h t into health professionals' perspectives. To the contrary, the data reveal that parents continue to t r u s t the i n d i v i d u a l s who are perceived as most important to t h e i r children's care i n sp i t e of. t h e i r understanding of differences i n perspectives. The parents i n the present study used hope as a strategy to cope with the r e a l i t y of t h e i r s i t u a t i o n and to maintain an o p t i m i s t i c outlook despite understanding of the medical perspective. That i s , the parents sometimes set aside the bio-medical information regarding t h e i r children's i l l n e s s e s i n favour of information from t h e i r experience which supported a hopeful stance. Again, there was no evidence to support a conclusion that hoping i n h i b i t s t r u s t i n health pro f e s s i o n a l s . K i r k p a t r i c k et a l . (1975) found that diagnostic information and prognostic statements did not seem to a l l e v i a t e much of the uncertainty for parents who were looking f o r s p e c i f i c information about what would happen to t h e i r c h i l d . The researchers perceived the parents to be 115 looking for p r e d i c t a b i l i t y which physicians could not give. It may be that, l i k e the parents who p a r t i c i p a t e d i n the current study, the p a r t i c i p a n t s were requesting information related to the i l l n e s s experience, that i s , information "from t h e i r point of view." The parent-health p r o f e s s i o n a l r e l a t i o n s h i p was described by K i r k p a t r i c k et a l . (1975) as having a competitive side based on the par-ents' need to exert control i n t h e i r i l l n e s s experiences. A parental need to c o n t r o l c e r t a i n aspects of t h e i r r e l a t i o n s h i p s with health profes-sionals i s supported by the accounts presented i n the current report. However, the data reveal that parents are not competing f o r a greater portion of the c o n t r o l per se, but are a c t i v e l y intervening when i t be-comes apparent that the behaviour of care givers i s not serving t h e i r c h i l d ' s best i n t e r e s t s . I t i s evident that parents monitor t h e i r c h i l d -ren's experiences and become i n t o l e r a n t of a medical perspective that f a i l s to take the experiences into account. D i f f i c u l t i e s i n the parent-health professional r e l a t i o n s h i p are further illuminated i n a study by Mulhern et a l . (1981). The researchers examined communication among c h i l d r e n with leukemia, parents and phy-si c i a n s f or the purpose of developing an.objective and d i r e c t method to quantify the adequacy of the communication. Twenty-five c h i l d r e n , t h e i r mothers, fathers and primary physician p a r t i c i p a t e d . The issue chosen for i n v e s t i g a t i o n was the c h i l d ' s medical prognosis and the protocol for determining prognosis seemed well c o n t r o l l e d ; however, no systematic pro-cedure f o r informing parents was made e x p l i c i t i n the report. A forced choice questionnaire regarding the c h i l d ' s prognosis was completed independently by the mothers, fathers, and physicians four times - once 116 for t h e i r own perception of the prognosis and one for t h e i r perception of how each of the other p a r t i c i p a n t s would respond. The c h i l d r e n completed only one questionnaire regarding t h e i r perception of the prognosis by i n d i c a t i n g a face that varied from a smile to a frown for each question. The researchers found that "physicians gave s i g n i f i c a n t l y l e s s o p t i m i s t i c appraisals of the children's prognosis than did mothers or fathers. Furthermore, physicians as well as parents-appeared to mis-understand each other's views" (p.482). Physicians s i g n i f i c a n t l y underestimated the prognostic views of the parents while the parents s i g n i f i c a n t l y overestimated the views of the physician. In other words, the data show that the parents held a more o p t i m i s t i c view of t h e i r c h i l d -ren's prognoses than did the physicians. Further, both parents and physicians perceived that t h e i r own view was also held by the other party; that i s , .they did not understand that discrepant perspectives . were operating. The mothers and fathers did accurately estimate t h e i r c h i l d ' s s e l f report as being higher than t h e i r own (p.482). The f i n d -ings support those of the current study that communication between parents and physicians i s problematic and one of the d i f f i c u l t i e s i s associated with discrepant points of view. Apparently the physicians' views c o r r e l a t e more highly with medical f a c t s than do parents' views which the researchers i n t e r p r e t to " r e f l e c t the f a i l u r e of parents to remember relevant information or i t s s i g n i f i c a n c e " (p.483). Another i n t e r p r e t a t i o n i s that the findings r e f l e c t the influences of d i f f e r e n t explanatory models f o r the children's i l l n e s s e s . Summary This chapter has examined the findings of the current study i n 117 l i g h t of rela t e d research presented i n the l i t e r a t u r e . I t i s apparent that commonalities e x i s t among parents' experiences with t h e i r children's chronic i l l n e s s e s that are independent of medical diagnoses. Few studies have dealt d i r e c t l y with h o s p i t a l i z a t i o n as a facet of the chronic i l l -ness experience. However, the consistency of t h i s study's findings with those of re l a t e d research i n d i c a t e that they are representative of the i l l n e s s experience rather than being uniquely re l a t e d to h o s p i t a l i z a t i o n . This serves to emphasize that i n order to understand the meaning parents give to the h o s p i t a l i z a t i o n of t h e i r c h r o n i c a l l y i l l c h i l d r e n , one must consider t h e i r ongoing experiences with i l l n e s s . I t i s evident that a c q u i s i t i o n of information i s t y p i c a l l y an ongoing concern f o r a l l parents of c h r o n i c a l l y i l l c h i l d r e n . H o s p i t a l -i z a t i o n places greater emphasis on the concern, as parents have an immediate need to gain understanding i n order to f u l f i l l t h e i r r o l e as mediators of t h e i r children's i l l n e s s experiences. The l i t e r a t u r e sup-ports the current f i n d i n g that parents have a unique r o l e i n managing t h e i r children's i l l n e s s experiences i n h o s p i t a l . However, few studies explore the parents' perspectives or address the parents' strategies f o r managing the h o s p i t a l s i t u a t i o n . I t i s evident that parents do know t h e i r i l l c h i l d r e n best and that t h e i r h o l i s t i c perspective of the children's experiences with i l l n e s s give them unique ins i g h t into the children's needs and responses during h o s p i t a l i z a t i o n . The l i t e r a t u r e emphasizes that day-to-day l i v i n g with a c h i l d ' s chronic i l l n e s s c a r r i e s a s i g n i f i c a n t emotional load f o r the parents. H o s p i t a l i z a t i o n often adds to the load; however, parents r e l y on coping st r a t e g i e s established over the course of t h e i r experience with i l l n e s s 118 and generally function e f f e c t i v e l y . I t i s evident that the intense p a r e n t - i l l c h i l d bond, apparent during times of h o s p i t a l i z a t i o n , i s developed over the course of t h e i r shared experience with chronic i l l n e s s . The l i t e r a t u r e supports the contention that t h i s bond gives strong d i r e c t i o n to the way the c h i l d ' s i l l n e s s i s managed on a d a i l y basis as w e l l as i n h o s p i t a l . F i n a l l y , the research l i t e r a t u r e supports the current f i n d i n g that parents are con-cerned about t h e i r r e l a t i o n s h i p s with the health professionals who care for t h e i r c h i l d r e n . Communication i s problematic as a common ground of understanding between parents and health professionals has not been established. The following chapter w i l l summarize and conclude t h i s report as w e l l as present implications f o r nursing p r a c t i c e and further research. Chapter 6 SUMMARY, CONCLUSIONS AND IMPLICATIONS FOR PRACTICE AND RESEARCH Summary This study has explored parents' perceptions of t h e i r experience with a h o s p i t a l i z e d , c h r o n i c a l l y i l l c h i l d . L i t t l e has been written about h o s p i t a l i z a t i o n i n the context of chronic childhood i l l n e s s and few studies have addressed the topic from the parents' perspective. Therefore, t h i s study d i f f e r s from others i n terms of i t s methodology and focus, as the i n t e r p r e t i v e approach has been used to gain in-depth understanding of the parents' perspective regarding h o s p i t a l i z a t i o n . L i t e r a t u r e r e l a t e d to the topic was reviewed i n order to provide a background for the study and indicated that health professionals are concerned about chronic childhood i l l n e s s and the impact i t has on family l i f e . H o s p i t a l i z a t i o n i s generally recognized to be one of the s i g n i f i c a n t features of the chronic i l l n e s s experience for f a m i l i e s ; however, i t appears that many of the commonly held assumptions about these f a m i l i e s while i n h o s p i t a l are unsupported by systematic research study. Current trends i n the care of h o s p i t a l i z e d children are placing greater emphasis on the r o l e of the parents i n providing support for the i l l c h i l d , as well as the r e s p o n s i b i l i t i e s of health professions toward parents. I t i s apparent that l i t t l e i s known about what h o s p i t a l i z a t i o n of a c h r o n i c a l l y i l l c h i l d i s l i k e f o r these parents and what we generally hold to be true has not been a r e s u l t of in-depth exploration of the parents' perspective. The conceptual framework for the study was based on the work of Kleinman ;(1977, 1978, et a l . , 1978) regarding explanatory models for -119-120 i l l n e s s . Kleinman has proposed that i l l n e s s , a s o c i o c u l t u r a l l y defined phenomenon, i s explained and understood by what he terms "explanatory models." Further, he suggests that there are three i n t e r a c t i n g socio-c u l t u r a l systems which support d i f f e r i n g explanatory models for i l l n e s s ; -these are the p r o f e s s i o n a l or bio-medical system, the popular culture system that i s i n d i v i d u a l and family based, and the f o l k care system. It i s apparent that i n d i v i d u a l s i n the popular culture system construct explanatory models based on t h e i r i l l n e s s experiences and that these models guide behaviour during i l l n e s s episodes. As such, parents of c h r o n i c a l l y i l l c h i l d r e n have explanatory models founded on long-term i l l n e s s experiences which can only be f u l l y understood by exploring t h e i r perspective and cannot be assumed to be congruent with explanatory models held by health pr o f e s s i o n a l s . The framework directed both the statement of purposes and the choice of methodology which was derived from the i n t e r p r e t i v e school of research and incorporated aspects of the phenomenological and grounded theory approaches. The i n t e r p r e t i v e methodology enabled the w r i t e r to explore parents' perceptions of t h e i r c h r o n i c a l l y i l l c h i l d ' s h o s p i t a l i z a -t i o n f o r the purposes of: c l a r i f y i n g the meaning of h o s p i t a l i z a t i o n within the context of chronic i l l n e s s ; gaining i n s i g h t i n t o chronic i l l n e s s i n f a m i l i e s having a c h i l d with chronic disease; and, determining i n t e r -ventions which may enhance the incidents of h o s p i t a l i z a t i o n . Data c o l l e c t i o n involved the in-depth interviewing of parents from s i x f a m i l i e s and was i n i t i a t e d by a semi-structured guide of questions adapted from the work of Kleinman et a l . (1978). A d d i t i o n a l questions were generated by the data i t s e l f which enabled the researcher to construct. 121 accounts with the p a r t i c i p a n t s that addressed and explained t h e i r per-spective. M u l t i p l e interviews enhanced the construction of consistent accounts and provided v e r i f i c a t i o n of the researcher's understanding of the parents' explanations. Analysis of the data occurred both concurrently with, and subsequently to, data c o l l e c t i o n . Thus the a n a l y t i c framework was developed by an ongoing d i a l e c t i c a l process between the researcher's in t e r p r e t a t i o n s of accounts and the actual accounts. The i n t e r p r e t i v e approach necessitated tape recording the interviews and verbatim trans-c r i p t i o n of each tape p r i o r to interviewing the parent(s) again. This f a c i l i t a t e d the i d e n t i f i c a t i o n of themes i n the accounts which were introduced during the subsequent interview for elaboration by the parent(s). The ongoing nature of the interviewing process enabled v e r i f i c a t i o n of common themes or concepts among the parents' explanatory models. The parents' accounts were presented i n r e l a t i o n to the common categories, themes and concepts which were the unifying threads of t h e i r verbalized experiences. Verbatim excerpts from the accounts were used to explain and enrich the find i n g s . The parents' explanations for the h o s p i t a l i z a t i o n of t h e i r c h r o n i c a l l y i l l c h i l d r e n were experien-t i a l l y based and defined within the context of the day-to-day experience of l i v i n g with chronic i l l n e s s . They viewed h o s p i t a l i z a t i o n i n terms of t h e i r r o l e as mediator of t h e i r c h i l d ' s i l l n e s s experience within a bureaucratic s e t t i n g and were p r i m a r i l y concerned with the a c q u i s i t i o n of information that would enable them to control c e r t a i n aspects of the experience for t h e i r c h i l d and for themselves. Parental interventions, with regard to c o n t r o l l i n g aspects of. the. c h i l d ' s experience, were focused 122 on providing d i r e c t emotional support toward r e i n f o r c i n g the c h i l d ' s i n t e r n a l resources or manipulating the environment through a c t i v e p a r t i c i p a t i o n i n care. These two patterns of con t r o l were not mutually exclusive and were used as the parents found appropriate within t h e i r experience. The parents' understanding and explanation of t h e i r r e l a t i o n s h i p s within the h o s p i t a l s e t t i n g was an important theme i n t h e i r accounts. Emphasis was placed on the strong bond between parent and sic k c h i l d which i s often i n t e n s i f i e d during incidents of h o s p i t a l i z a t i o n as a r e s u l t of sharing a d i f f i c u l t experience. As such, some parents perceived h o s p i t a l i z a t i o n as an opportunity to spend time with t h e i r c h i l d i n a p a r t i c u l a r l y meaningful way. The parents' relationships with health professionals were characterized by some understanding of the discrepancies between the explanatory models involved and concern about the e f f e c t s of discrepant viewpoints on t h e i r c h i l d ' s i l l n e s s experience. Although the parents were occasionally c r i t i c a l about i n d i v i d u a l s and/or the care given t h e i r c h i l d , they were pro t e c t i v e of health professionals as a group. The findings of the current study were discussed i n conjunction with the findings of rela t e d research appearing i n the l i t e r a t u r e and were found to be congruent with others' work. I t was apparent that l i t t l e i s known about h o s p i t a l i z a t i o n as a facet of the chronic i l l n e s s experience and that few studies have approached chronic i l l n e s s from a perspective which enabled in-depth exploration of the parents' perceptions. H o s p i t a l i z a t i o n \appears to present few problems that are unique within the chronic i l l n e s s experience, although the d i f f i c u l t i e s may be perceived 123 d i f f e r e n t l y and responses modified because of the h o s p i t a l s e t t i n g . For example, normalization was a concern for p a r t i c i p a n t s i n the current study. However, the l i t e r a t u r e indicates that, rather than being unique to times of h o s p i t a l i z a t i o n t h i s concern i s an ongoing aspect of l i v i n g with: chronic i l l n e s s . I t was apparent that the meaning parents give to t h e i r i l l n e s s experience i n h o s p i t a l i s a r e f l e c t i o n of the t r a j e c t o r y of t h e i r l i f e experience with a c h r o n i c a l l y sick c h i l d . Conclusions and Implications for Nursing A number of conclusions can be drawn from the findings of t h i s study which have implications f o r nursing p r a c t i c e when i t involves caring for parents of c h r o n i c a l l y i l l c h i l d r e n during times of h o s p i t a l -i z a t i o n . The f i r s t i s that the parents' explanatory models f o r i l l n e s s are e x p e r i e n t i a l l y based and serve to give meaning and d i r e c t i o n to t h e i r behaviour i n h o s p i t a l . Thus, parents' needs, concerns, and responses can only be understood by exploring t h e i r perspectives. Further, the d i s -crepancies that e x i s t between the explanatory models u t i l i z e d by parents and health professionals often r e s u l t i n misunderstandings and d i s s a t i s -f a c t i o n with care. This implies that care which appropriately meets the needs of these parents must incorporate knowledge and an appreciation of the parents' perspective. In addition, health professionals have an o b l i g a t i o n to explain t h e i r point of view i n order to enhance parental understanding and f a c i l i t a t e negotiation of care that i s mutually s a t i s f y i n g . Secondly, one can conclude that parents of h o s p i t a l i z e d 124 c h r o n i c a l l y i l l c h i l d r e n have some common concerns which should be anticipated by health professionals when planning care. These involve: a c q u i s i t i o n of information; control of the i l l n e s s experience i n h o s p i t a l f o r the c h i l d and f o r themselves; and, the dilemma the parents face when caught between all e g i a n c e to t h e i r c h i l d and dependence on health profes-s i o n a l s . These areas provide health professionals with d i r e c t i o n f o r assessing the needs of p a r t i c u l a r parents and planning care that i s relevant to t h e i r unique experience with i l l n e s s . S p e c i f i c implications for nursing w i l l now be discussed by r e l a t i n g the conclusions to examples from nursing p r a c t i c e . I t i s common knowledge among nurses that parents require honest, complete explanations of t h e i r c h i l d ' s i l l n e s s . More and more information i s being given to parents but i t i s focused on what p r a c t i t i o n e r s f e e l i s necessary from a professional perspective. As Kleinman et a l . (1978) argue, health professionals hold d i f f e r e n t explanatory models than do i n d i v i d u a l s i n the popular culture system. Thus the information given to parents may be t o t a l l y inappropriate as the c h i l d ' s disease i s addressed rather than the i l l n e s s experience. In other words, nurses may appropriately a n t i c i p a t e the parents' need to receive information but then may give information that i s not relevant to them. I t i s evident that nurses should not assume they know what the parents need and so must take the parents' perspectives i n t o account. The only way t h i s can occur i s by asking each parent for his/her viewpoint, as perspectives vary from person to person i n accordance with differences i n t h e i r i l l n e s s experiences. Awareness of the parent's perspective i s not s u f f i c i e n t to insure that the care which i s provided w i l l meet his/her needs. 125 Kleinman et a l . (1978) state that i n order for care to be mutually s a t i s f y i n g , health professionals and parents must negotiate from a ground of common understanding. Nurses can begin to e s t a b l i s h t h i s "ground 'of common understanding" during the assessment phase of the nursing process by sharing t h e i r observations and by asking parents f o r t h e i r perceptions of the c h i l d ' s i l l n e s s . However, t h i s i s only a step-ping stone to the process of negotiation. There i s no formula for negotiation but one can say that i t involves c o l l a b o r a t i o n between the nurse and the parent to formulate and carry out a mutually acceptable plan of care for the i l l c h i l d . The following example i s given to i l l u s t r a t e the point. I t i s common knowledge that parents of h o s p i t a l i z e d c h i l d r e n are concerned about p a i n f u l procedures which involve t h e i r c h i l d r e n . Often the i d e a l s o l u t i o n for them i s to avoid having the procedure done; how-ever, from the medical perspective t h i s may not be wise. When a p a i n f u l procedure involves the nurse, i t i s important that s/he o f f e r an explana-t i o n from the professional medical viewpoint and that s/he ask for the parent's perspective. Differences between how the nurse and the parent view the s i t u a t i o n w i l l become evident through discussion and serve as negotiation points for the planning of care. I t i s only when perspectives d i f f e r that negotiation i s required. However, according to Kleinman (1977, 1978), t h i s i s n e c e s s a r i l y the case when health professionals and c l i e n t s i n t e r a c t . Care that i s mutually s a t i s f y i n g can be negotiated i f there i s a willingness on the part of the nurse to a l t e r some aspects of the way care i s provided i n order to accommodate the parent's perspective. Parents' unique, h o l i s t i c perspective of t h e i r c h i l d and h i s / her experience with chronic i l l n e s s makes them invaluable informants regarding the c h i l d ' s needs and responses during h o s p i t a l i z a t i o n . However, t h e i r perspective i s systematically, disregarded by nurses within the p r o f e s s i o n a l medical care system. ^In that nursing purports to view t h e i r c l i e n t s i n a h o l i s t i c manner, t h i s has broad implications for the basic education of student nurses as w e l l as continuing educa-tio n f o r professional nurses. We have been ignoring one facet of i l l -ness and that i s the c l i e n t ' s i l l n e s s experience. The use of the concept of explanatory models i n nursing education would promote a more h o l i s t i c view of c l i e n t s i n r e l a t i o n to i l l n e s s . F i n a l l y , one can conclude .that parents are s e l f - r e l i a n t i n coping with the emotional impact of h o s p i t a l i z a t i o n and do not view nurses as a resource i n terms of emotional support. This has implica-tions f or p r a c t i c e i n that nurses perceive themselves to be c l i e n t advocates which i s discrepant from the view held by parents. This i s evidence that the care provided to parents does not meet t h e i r needs and supports the previous suggestions regarding negotiation of care. It i s apparent that t h i s study gives d i r e c t i o n f o r ways of changing the d e l i v e r y of nursing care which would enhance parents' experiences with t h e i r c h r o n i c a l l y i l l c h i l d r e n i n h o s p i t a l . Implica-tions f o r further research i n the area are also evident and w i l l be discussed i n the following section. Implications for Further Research This study has demonstrated that in-depth exploration of the parents' perspective provides valuable i n s i g h t into the family's chronic i l l n e s s experience i n h o s p i t a l . During the study, several questions arose i n the mind of the researcher which have implications f or future 127 research of t h i s kind i n the area of chronic childhood i l l n e s s . These questions w i l l now be addressed. The f i r s t i s , how do parents perceive h o s p i t a l i z a t i o n i n the long-term scheme of t h e i r i l l n e s s experience? Two things prompted the question; that i s , the research studies which examined parents' views of chronic childhood i l l n e s s placed r e l a t i v e l y l i t t l e emphasis on h o s p i t a l -i z a t i o n while the parents who p a r t i c i p a t e d i n t h i s study explained that incidents of h o s p i t a l i z a t i o n often affected l i f e at home for .some time a f t e r the admission was over. This l e d the researcher to question whether the parents' perceptions change once the h o s p i t a l admission i s over and suggest that another study might follow parents from the time of h o s p i t a l -i z a t i o n through discharge and into the home. The value of t h i s approach l i e s i n greater understanding of h o s p i t a l i z a t i o n i n terms of the t r a j e c -tory of the i l l n e s s experience. The present study also gives evidence that parents' perceptions change over repeated h o s p i t a l i z a t i o n s . This implies that a l o n g i t u d i n a l study which follows parents through multiple h o s p i t a l i z a t i o n s would also provide valuable i n s i g h t into the tr a j e c t o r y of t h e i r experience. A study such as t h i s could be incorporated into the one previously described. T h i r d l y , the researcher began to question how the h o s p i t a l experiences of parents with c h r o n i c a l l y i l l c h i l d r e n compare with those of parents having usually w e l l c h i l d r e n . Despite the f a c t that most of the l i t e r a t u r e regarding h o s p i t a l i z a t i o n r e f e r s to usually w e l l c h i l d r e n , l i t t l e has been written from the parents' perspective. This indicated to the w r i t e r that a study regarding h o s p i t a l i z a t i o n which involves parents of both acutely and c h r o n i c a l l y i l l c h i l d r e n would be a f r u i t f u l area 128 for further research. F i n a l l y , the researcher began to question how other family members perceive h o s p i t a l i z a t i o n . In that each family member has a d i f f e r e n t experience i n r e l a t i o n to the i l l c h i l d ' s h o s p i t a l i z a t i o n , i t stands to reason that the meaning given to h o s p i t a l i z a t i o n would vary greatly among the members. The research l i t e r a t u r e i ndicates that: h o s p i t a l i z a t i o n has a s i g n i f i c a n t impact on i l l children's l i f e experiences but l i t t l e has been written from the children's perspective; and, s i b l i n g s of an i l l c h i l d are affected by the c h i l d ' s h o s p i t a l i z a t i o n . However, t h i s topic has not been addressed through in-depth exploration of the s i b l i n g s ' perspective. This implies that studies of the perceptions of i l l c h i l d r e n and t h e i r s i b l i n g s regarding h o s p i t a l i z a t i o n would be valuable i n providing a d d i t i o n a l i n s i g h t into f a m i l i e s ' experiences with chronic childhood i l l n e s s ; To conclude, h o s p i t a l i z a t i o n i s only one facet of parents' ongoing experience with a c h r o n i c a l l y i l l c h i l d . However, i t provides health professionals with the opportunity to p o s i t i v e l y intervene at a s i g n i f i c a n t point i n the i l l n e s s experience. I t i s evident that one of the r e q u i s i t e s to p o s i t i v e intervention i s an understanding of the parents' perspective. 129 BIBLIOGRAPHY Aamodt, A.M. Examining ethnography f o r nurse researchers. Western  Journal of Nursing Research, 1982, 4-(2) , 209-220. Anderson, J.M. The s o c i a l construction of i l l n e s s experience: Families with a c h r o n i c a l l y i l l c h i l d . 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What sorts of things do you f i n d h e l p f u l when you are dealing with having a c h i l d i n hospital? 5. How do you f i n d that h o s p i t a l i z a t i o n a f f e c t s your day-to-day l i f e ? 6. What sorts of things make i t more d i f f i c u l t f o r you to manage when your c h i l d i s i n hospital? 7. Is there something that health professionals might do that you would f i n d h e l p f u l during the h o s p i t a l i z a t i o n ? *-Adapted from Kleinman, A., Eisenberg, L. & Good, B. Culture, i l l n e s s and care: C l i n i c a l lessons from anthropologic and c r o s s - c u l t u r a l research. Annals of Internal Medicine, 1978, 88(2), 251-258. 138 Appendix B Explanation and Consent My name i s Carole Robinson and I am a nursing student i n the graduate program at the University of B r i t i s h Columbia. I am interest e d i n how family l i f e i s affected when a c h i l d i s c h r o n i c a l l y i l l . S p e c i f i -c a l l y , I am interested i n t a l k i n g with you about what h o s p i t a l i z a t i o n i s l i k e f o r you. The purpose of t h i s study i s to explore how parents manage with the h o s p i t a l i z a t i o n of t h e i r c h i l d . I would l i k e to interview you and to tape record the conversation. An interview w i l l l a s t approximately one hour. We may ta l k once or more often, and w i l l decide together how many interviews take place. Many parents f i n d i t h e l p f u l to ta l k over t h e i r concerns with a health p r o f e s s i o n a l . As w e l l , the information you give me may a s s i s t nurses caring f o r fam i l i e s i n the future. Please f e e l free to ask any questions you wish about the study. It i s important to understand that your decision to p a r t i c i p a t e or not to p a r t i c i p a t e i n the study w i l l not a f f e c t your c h i l d ' s care i n any way. Should you decide to a s s i s t me i n the study, you may withdraw at any time again without a f f e c t i n g your c h i l d ' s care. Should you agree to p a r t i c i p a t e , you have the r i g h t to refuse to answer any question or to stop an interview at any time. As our conversations w i l l be tape recorded, you also have the r i g h t to request erasure of any tape or portion of a tape at any time during the study. Your name w i l l not be i d e n t i f i e d with any of the study materials. However, the o v e r a l l r e s u l t s of the study may be published to promote an understanding of how parents experience h o s p i t a l i z a t i o n . I hereby give my consent to p a r t i c i p a t e i n the study as defined. Signed: Witnessed: Date: If you wish to receive a copy of the research report, please include your address. 

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