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Communication patterns in families with a chronically ill child Canam, Connie J. 1980

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- COMMUNICAT ION P A T T E R N S I N F A M I L I E S W I T H A C H R O N I C A L L Y I L L C H I L D b y C o n n i e J . C a n a m B . N . , D a l h o u s i e U n i v e r s i t y , 1 9 7 3 A T H E S I S S U B M I T T E D I N P A R T I A L F U L F I L L M E N T OF THE R E Q U I R E M E N T S F O R T H E D E G R E E OF M A S T E R OF S C I E N C E m MOUSING i n THE F A C U L T Y OF G R A D U A T E S T U D I E S SCHOOL OF N U R S I N G We a c c e p t t h i s t h e s i s a s . c o n f o r m i n g t o t h e r e q u i r e d s t a n d a r d T H E U N I V E R S I T Y OF B R I T I S H C O L U M B I A A u g u s t , 1 9 8 0 (c) C o n n i e J o a n C a n a m , 1 9 8 0 In p r e s e n t i n g t h i s t h e s i s in p a r t i a l f u l f i l m e n t o f the r e q u i r e m e n t s f o r an a d v a n c e d d e g r e e at t h e U n i v e r s i t y o f B r i t i s h C o l u m b i a , I a g r e e that t h e L i b r a r y s h a l l make i t f r e e l y a v a i l a b l e f o r r e f e r e n c e and s t u d y . I f u r t h e r a g r e e t h a t p e r m i s s i o n f o r e x t e n s i v e c o p y i n g o f t h i s t h e s i s f o r s c h o l a r l y p u r p o s e s may be g r a n t e d by the Head o f my Department o r by h i s r e p r e s e n t a t i v e s . It i s u n d e r s t o o d t h a t c o p y i n g o r p u b l i c a t i o n o f t h i s t h e s i s f o r f i n a n c i a l g a i n s h a l l not be a l l o w e d w i t h o u t my w r i t t e n p e r m i s s i o n . Department o f The U n i v e r s i t y o f B r i t i s h C o l u m b i a 2075 Wesbrook Place Vancouver, Canada V6T 1W5 ABSTRACT This exploratory study was designed to e l i c i t i n f o r -mation on how parents communicate about t h e i r c h i l d ' s chronic i l l n e s s within the family and the guidance they have received from health professionals i n communicating about the i l l n e s s . The study was conducted with a convenience sample of 13 parents from 11 families of children with c y s t i c f i b r o s i s . A semi-structured interview schedule was used with each family The data c o l l e c t e d were summarized into categories and descrip t i v e s t a t i s t i c s were u t i l i z e d . A l l 11 families described d i f f i c u l t i e s i n one or more areas of communicating about the i l l n e s s . Only one parent had received s p e c i f i c guidance from health professionals on communicating about c y s t i c f i b r o s i s . The results of t h i s study suggest that most parents do not give t h e i r children s u f f i c i e n t information about c y s t i c f i b r o s i s to enable them to cope e f f e c t i v e l y with the i l l n e s s . Also, parents do not discuss t h e i r own feelings about l i v i n g with a chronically i l l c h i l d nor do they encourage t h e i r c h i l -dren to talk about th e i r feelings. This lack of communication about the facts and f e e l -ings of l i v i n g with c y s t i c f i b r o s i s appears to be related to two factors. One factor i s that parents do not know how to i v communicate about the i l l n e s s and i t s e f f e c t s on the family. They need guidance i n providing children with adequate and age-appropriate information, i n checking children's under-standing of the i l l n e s s and i n encouraging children to express t h e i r feelings. The other factor i s that parents do not per-ceive the importance to t h e i r children of having a thorough understanding of c y s t i c f i b r o s i s , nor the importance to them of having opportunities to express t h e i r f e e l i n g s . Further research i s required to i d e n t i f y the know-ledge, feelings, and perceptions of chro n i c a l l y i l l children and t h e i r s i b l i n g s . TABLE OF CONTENTS Page ABSTRACT i i i TABLE OF CONTENTS V LIST OF TABLES v i i i ACKNOWLEDGEMENTS ix CHAPTER I. INTRODUCTION 1 PURPOSE OF THE STUDY 2 PROBLEM STATEMENT 3 BACKGROUND TO THE PROBLEM 3 SIGNIFICANCE OF THE PROBLEM 4 POTENTIAL SIGNIFICANCE OF THE STUDY 6 DEFINITION OF TERMS 6 ASSUMPTIONS 6 LIMITATIONS 7 CHAPTER I I . LITERATURE REVIEW 8 COPING THEORY 8 COMMUNICATION THEORY 13 FAMILIES COPING WITH A CHRONICALLY ILL CHILD 18 CHAPTER I I I . METHODOLOGY '. 29 SAMPLE SELECTION 30 DATA COLLECTION 30 DATA ANALYSIS 32 v v i Page CHAPTER IV. RESULTS 34 DESCRIPTION.OF THE SAMPLE 34 FINDINGS 37 PARENTS' KNOWLEDGE OF CYSTIC FIBROSIS 37 EXPLAINING CYSTIC FIBROSIS TO THE I L L CHILD 38 EXPLAINING THE ILLNESS TO SIBLINGS 4 2 CHECKING CHILDREN'S UNDERSTANDING 44 ARE PARENTS UNCOMFORTABLE TALKING ABOUT THE ILLNESS? 44 QUESTIONS ASKED BY CHILDREN 4 5 PARENTS' CONVERSATION ABOUT THE ILLNESS 4 8 PARENTS TALKING ABOUT THEIR FEELINGS 50 TALKING TO THE I L L CHILD ABOUT HIS FEELINGS 52 TALKING TO THE WELL CHILDREN ABOUT THEIR FEELINGS 57 RECEIVING GUIDANCE FROM PROFESSIONALS 60 WHAT HAS BEEN MOST HELPFUL? 61 WHAT WOULD HAVE BEEN HELPFUL? 65 CHAPTER V. DISCUSSION OF FINDINGS 70 PARENTS' KNOWLEDGE 70 DISCUSSION OF FACTS 74 DISCUSSION OF FEELINGS 79 GUIDANCE FROM HEALTH PROFESSIONALS 85 v i i Page CHAPTER VX. SUMMARY, CONCLUSIONS, IMPLICATIONS, AND RECOMMENDATIONS FOR FURTHER STUDY 8 7 BIBLIOGRAPHY 99 APPENDICES 105 APPENDIX A. LETTER OF CONSENT 105 APPENDIX B. INTERVIEW SCHEDULE 106 LIST OF TABLES TABLE Page 1 SEX AND AGE OF CHILD WITH CYSTIC FIBROSIS 35 2 AGE AT DIAGNOSIS 36 3 NUMBER AND AGE OF SIBLINGS 36 v i l i ACKNOWLEDGEMENTS The author Is grateful to the members of her com-mittee, Dr.. Marilyn Willman and Mrs. Ruth E l l i o t t , for t h e i r guidance and contribution i n the research and writing of t h i s thesis; and the families for giving of themselves and making th i s study possible. F i n a l l y , the author i s grateful to her son, William Evon Canam McCreery, whose untimely a r r i v a l Interrupted t h i s study but whose presence made i t more mean-in g f u l . Ix CHAPTER I INTRODUCTION Chronic i l l n e s s i n a c h i l d creates a s t r e s s f u l s i t u -ation for the whole family. Not only does i t pose major problems of adjustment for a l l family members (Kaplan, 1973) but i t has implications for the mental health, relationships and even the continued existence of the family (Steinhauer, 1977). Only i n recent years have health professionals recognized the importance of extending support to the family of the i l l c h i l d , e s p e c i a l l y the parents. Since i t i s the parents who are most responsible for meeting the needs of the ind i v i d u a l members, t h e i r f a i l u r e to cope with the i l l n e s s may preclude sound coping by the res t of the family (Kaplan, 1973; Grossman, 1972). As Burton (1975) stresses: "The parents' reactions a f f e c t the c h i l d , colouring his approach to the disease, therapy and l i f e i n general" (P.3). What support do parents of chronically i l l children need i n order to cope e f f e c t i v e l y with the i l l n e s s , i . e . to master the problems associated with the stress of chronic i l l -ness (Kaplan, 1973)? Before answering that we must begin with a better understanding of how families do cope with the stress of having a chron i c a l l y i l l c h i l d . Adaptive and maladaptive coping patterns must be i d e n t i f i e d before health professionals 1 2 can provide the support these families need. Several authors have i d e n t i f i e d a variety of coping tasks which face the family of the chronically i l l , and which are necessary to complete i f successful adaptation i s to occur, (Kaplan et a l . , 1973; Livsey, 1972; Olsen, 1970; and Caplan, 1963). One task frequently mentioned but which has received l i t t l e research attention i s that of communication about the i l l n e s s within the family. Tropauer et a l . (1970) stress that i n e f f e c t i v e coping results when communication i s lacking, when the c h i l d i s not educated about his i l l n e s s and when his needs and feelings are not perceived. Burton further emphasizes the importance of communicating about the i l l n e s s : Not talking about the i l l n e s s would seem to handicap the c h i l d addition-a l l y i n terms of his understanding of the i l l n e s s , h is a b i l i t y to speak of i t and most important his a b i l i t y to gain reassurance and emotional comfort (Burton, 1975, p.138). Purpose of the Study The purpose of the present study i s twofold. The f i r s t purpose i s to describe one area of family coping with chronic i l l n e s s , that of family communication about the i l l n e s s . The second purpose i s to i d e n t i f y what guidance the parents have received or would l i k e to receive from health profession-als to a s s i s t them i n communicating about the i l l n e s s within 3 the family. Problem Statement This study w i l l address the following s p e c i f i c questions: How do parents communicate about t h e i r child's chronic i l l n e s s within the family? What guidance have they received or would they l i k e to receive from health professionals on communicating about the i l l n e s s ? Background to the Problem The investigator's i n t e r e s t i n the area of family communication about chronic i l l n e s s began while she was working on a p e d i a t r i c oncology ward. Several phenomena were repeat-edly observed. When the c h i l d with cancer was hos p i t a l i z e d for prolonged periods, his mother spent most of her days and even-ings at his bedside, although she often had other children at home. The father was rarely present and the s i b l i n g s almost never came to v i s i t . Despite the p a i n f u l procedures which the c h i l d had to undergo, the, number of re-admissions he had, the number of other sick and dying children surrounding him, mother and c h i l d never seemed to talk about the i l l n e s s or t h e i r f e e l -ings about i t . Yet there were frequent signs that they were worrying about i t s i l e n t l y ; a mother would leave her child's 4 room dry-eyed, only to be found i n the washroom crying her eyes out; or, as i n one instance, a ten year old c h i l d who suppo-sedly didn't know she had cancer drew a picture of a horse draw-ing a cart with a casket i n i t . The investigator became concerned about the possible negative effects the above factors might have on the family's functioning and the apparent lack of support these families were receiving from the health professionals who came i n contact with them. Therefore, i t was decided to investigate the problem by f i r s t establishing i f the behaviors observed were common phenomena among families of children with a chronic, l i f e threatening i l l n e s s . Secondly, the investigator wanted to determine i f the parents had received guidance from-health professionals i n communicating about the i l l n e s s or i f they perceived the need for such guidance. Significance of the Problem Several investigators have found that parents do have d i f f i c u l t y communicating about th e i r child's chronic i l l n e s s within the family. Tropauer et a l . (1970) found that 9 out of 18 mothers said they had no discussion about c y s t i c f i b r o s i s with either the i l l c h i l d or his s i b l i n g s and 4 of them said they concealed the facts of the i l l n e s s from the children. McCallum and Gibson (1970) found i n t h e i r study that approxi-5 mately one t h i r d of parents of school aged children avoided giving the c h i l d any information about his i l l n e s s . Turk (19.6.4) found s i g n i f i c a n t problems i n communication between family members. A: s i g n i f i c a n t number of parents did not discuss t h e i r child's i l l n e s s with their well children and 60 percent of them never discussed the diagnosis with the sick c h i l d . Simi-l a r l y , Burton (1975) found that the majority of 53 families she studied, did not communicate e f f e c t i v e l y about the i l l - -ness with either t h e i r well children or the c h i l d with c y s t i c f i b r o s i s . Kulczycki et a l . (1969) noted varying degrees of discomfort i n talking about c y s t i c f i b r o s i s i n the 20 fami-l i e s they studied. They also noted l i t t l e or no discussion of feelings amongst family members. Cytryn et a l . (1973) found sim i l a r results i n the 29 families of children with c y s t i c f i b r o s i s they studied. Almost a l l parents were unable or unwilling to talk with t h e i r c h i l d about his fee l i n g s . Even factual information was reluctantly or p a r t i a l l y communicated and only i n a few cases did the c h i l d express a f u l l under-standing of his i l l n e s s . In none of these cases had parents been given help i n examining th e i r own feelings or those of t h e i r c h i l d about c y s t i c f i b r o s i s . The l a t t e r study was the only one found which actually investigated the support fami-l i e s had received i n communicating about the i l l n e s s . 6 Potential Significance of the Study It i s hoped that the information e l i c i t e d i n t h i s study w i l l a s s i s t health professionals i n t h e i r understanding of how families with a chronically i l l c h i l d communicate about the i l l n e s s within the family. I t i s also hoped that i t w i l l lend support to the important role that health professionals play i n a s s i s t i n g families i n t h e i r communication about the i l l n e s s . D e f i n i t i o n of Terms Communication - for the purpose of t h i s study verbal statements of feelings and facts about the i l l n e s s . Chronic i l l n e s s - for the purpose of t h i s study, c y s t i c f i b r o s i s . Family - mother and/or father, i l l c h i l d and s i b l i n g s . Assumptions 1. It i s assumed that parents have responded truth-f u l l y to the questions. 2. I t i s assumed that the parents' perceptions of how they communicate are an accurate represen-tat i o n of what actually occurs. 7 3. It i s assumed that families of children with c y s t i c f i b r o s i s have feelings about l i v i n g with a chron i c a l l y i l l c h i l d . Limitations 1. Due to the small size of the sample, the g e n e r a l i z a b i l i t y i s lim i t e d . 2. The study describes the parents' perception of how they communicate which may or may not r e f l e c t what actually occurs. CHAPTER II LITERATURE REVIEW The purpose of the l i t e r a t u r e review i s to determine the present state of knowledge i n the area of family communica-tio n about a child' s chronic i l l n e s s . The general t h e o r e t i c a l frameworks within which t h i s research was conducted are coping theory and communication theory. The t h e o r e t i c a l proposition central to t h i s l i n e of research i s that i n order for a family with a chr o n i c a l l y i l l c h i l d to cope e f f e c t i v e l y , i t i s neces-sary for them to have a r e a l i s t i c understanding of the i l l n e s s and i t s e f f e c t s on in d i v i d u a l members and to communicate t h i s openly with one another. Coping Theory Coping as a broad concept includes mastery of any new sit u a t i o n or problem (Murphy, 1962). I t i s a kind of problem solving; therefore to cope e f f e c t i v e l y i t i s necessary to recog-nize and understand the problems (Wrightsman, 19 79). Several authors have emphasized the importance of information seeking i n the process of coping (Lazarus, 1977; Hamburg et a l . , 1967; Grossman, 1972; Schulman, 1976). I n t e l l e c t u a l mastery gives a sense of control over s t r e s s f u l situations whereas the unknown creates anxiety (Janis, 19 58; Futterman & Hoffman, 19 73). Lazarus (1966) also emphasizes the key role of cogni-8 9 tive appraisal and, therefore, the meaning attached to stress-s t i m u l i , i n determining the type of coping pattern used by the family. The diagnosis of chronic, life-threatening i l l -ness i n a c h i l d poses a threat to the family. This leads parents to cognitively appraise the threatening s i t u a t i o n , which includes assessing the degree of the threat, determining the a v a i l a b i l i t y of options, the strength of personal resources and one's sense of competence to master the s i t u a t i o n (Lazarus, 1966). Once the individuals involved have appraised the s i t u a t i o n , they then employ certa i n coping pro-cesses based on t h e i r i n d i v i d u a l coping s t y l e . This coping st y l e i s influenced by such factors as early s o c i a l experience, past experience with stress and success i n dealing with i t , and disease related factors. Whatever the coping style employed by individuals i t has cognitive, a f f e c t i v e and behavioral aspects (Kiley, 1972). e f f e c t i v e coping Threat — ^ cognitive appraisal coping processes i n e f f e c t i v e (Illness) X { \ \ j coping in d i v i d u a l coping s t y l e cognitive a f f e c t i v e behavioral Figure I Investigator's Schematic Representation of the Coping Process 10 Lipowski (1970) i d e n t i f i e s two general modes for dealing cognitively with the fact of i l l n e s s . One i s minimiza-ti o n i n which denial, r a t i o n a l i z a t i o n and sel e c t i v e inattention are operative. The other i s v i g i l a n t focusing which i s characterized by i t s obsessional nature, including sharply focused attention to d e t a i l , narrowing of interests to matters relevant to the i l l n e s s , r i g i d i t y of opinion, and i n f l e x i b i l i t y i n adapting to the unexpected. There i s also scepticism of medical competence and quickness to c r i t i c i z e . I n d i v i d u a l s who are using v i g i l a n t focusing need repeated explanations and d i s -cussions of the i l l n e s s and i t s management and thorough explanations of a l l procedures. F a i l u r e to do this may increase the individual's anxiety and h o s t i l i t y . Research has shown that parents employ both modes of cognitive coping i n dealing with th e i r child's chronic i l l n e s s . V i g i l a n t focusing i s most commonly seen i n parents when the i r c h i l d i s very i l l or dying whereas minimization i s frequently seen i n the f i r s t few months following the child's diagnosis. Burton (1975) found i n the parents she studied that denial was the most widespread defense mechanism used i n the f i r s t weeks after the c h i l d was diagnosed with c y s t i c f i b r o s i s . As a r e s u l t parents often did not r e c a l l what was said to them at the i n i t i a l conference and many gaps remained i n t h e i r knowledge. Wood, Friedman & S t e i s e l (19 67) reported s i m i l a r 11 r e s u l t s i n th e i r study of parents of children with phenyl-ketonuria. They found that parents had surp r i s i n g l y l i t t l e accurate knowledge and some misinformation about the condition despite the fa c t that a l l were given accurate information by t h e i r physician when the c h i l d was f i r s t diagnosed. Hamburg & Adams (1967) have been involved for over sixteen years i n collaborative studies which explore the ways in which individuals cope with s t r e s s f u l events such as l i f e threatening i l l n e s s . They found that people go through stages similar to those i d e n t i f i e d by Kubler-Ross (1969) i n the dying patient. F i r s t there i s denial and avoidance of the nature of the i l l n e s s which permits the i n d i v i d u a l to make a gradual t r a n s i t i o n to the experience. When individuals begin facing t h e i r i l l n e s s they seek more information about factors relevant to the i l l n e s s . With the r e a l i t y comes periods of depression. The authors stressed that the t r a n s i t i o n from denial to recog-n i t i o n of the r e a l i t y of the s i t u a t i o n was accomplished as a series of approximations through which an i n d i v i d u a l came to a gradual understanding of his s i t u a t i o n . Grossman (19 72) reported similar results i n her study of s i b l i n g s of retarded children. She found that many of them described a long process of gradually coming to understand and cope with the idea of a s i b l i n g ' s handicap. Due to the frequency of t h i s mode of coping with chronic i l l n e s s , Burton (1975) recommended that parents 12 v i s i t the doctor on several occasions following the diagnosis so facts could be imparted gradually and c l a r i f i e d . The affective-emotional aspect of coping i s s i g n i f i -cantly influenced by the individual's cognitive coping s t y l e . (Lazarus et a l . , 1957; F r i t z , 1957; Lazarus, Deese & Osier, 1951). The individual's personal int e r p r e t a t i o n of the i l l n e s s i n terms of consequences to himself or his important r e l a t i o n -ships and/or goals i s responsible for his emotional response. (Kiley, 1972). Lazarus (1966) argues that an individual's expectations about his a b i l i t y to deal with the s t r e s s f u l s i t u a -tions are an important factor i n determining whether the person w i l l f e e l threatened or challenged. To the extent that he prepares himself to function adequately i n the s t r e s s f u l s i t u a t i o n , he thereby changes the nature of the transaction along with the emotions he might have experienced had not anticipatory coping occurred. According to Lazarus (1966) this reverses the usual b e l i e f that coping follows emotion or i s caused by i t . He suggests that coping precedes emotion and influences i t s form and i n t e n s i t y . This t h e o r e t i c a l proposition provides a rationale for preparing parents to cope with chronic i l l n e s s i n t h e i r c h i l d through anticipatory teaching. This would provide them with knowledge and the expectation to be able to deal with t h e i r children's behavior, questions,etc., thereby reducing the emotional reaction they might otherwise 13 experience. Many investigators have examined the e f f e c t of advance preparation i n helping individuals cope e f f e c t i v e l y with s t r e s s f u l s i t u a t i o n s . Janis (1958) found i n his c l a s s i c study of s u r g i c a l patients that those who had p r i o r information about post operative events fared better post operatively and had e a r l i e r discharge dates than did the control group who had no preparation. Considerable evidence exists to suggest the importance of accurate knowledge to a child's a b i l i t y to cope with i l l n e s s (Wolff, 1969; Kliman, 1978; Cain, 1964; Tropauer et a l . , 1970). Also, studies of parents of chronically i l l c hildren have shown that parents who i n t e l l e c t u a l l y master the si t u a t i o n gain a sense of control and cope more e f f e c t i v e l y than those whose knowledge i s limited (Futterman & Hoffman, 1973; Stone, 1967; Felzen, 1970). In summary, the aspect of coping theory which i s per-tinent to this study i s that to cope e f f e c t i v e l y with s t r e s s f u l situations one must have accurate and complete knowledge and understanding of the s i t u a t i o n which occurs gradually over a period of time. Communication Theory The major functions of communication for a l l l i v i n g systems are adaptation to the environment and the establishment 14 and maintenance of relationships with others (Thoyer, 1968). If the i n d i v i d u a l i s to adapt successfully to his environment and establish meaningful relationships, he must communicate e f f e c t i v e l y . The most basic element of communication i s perception, the process by which people se l e c t , organize and interpret sensory stimulation into a meaningful picture of the world (Berelsen & Steiner, 1964). In other words, i t i s the process of making sense out of one's experience (Haney, 1973). Obviously, what kind of sense one makes out of a s i t u a t i o n has a great influence on how he responds to that s i t u a t i o n . Since no two people learn the same lessons from l i f e or have exactly the same environments, no two individuals w i l l perceive s i t u a -tions exactly the same way (March & Simon, 19 58). The prime obstacle of every form of communication ... i s simply the fact of difference ... the great gap i s the gap i n background, experience, motivation ... I f we cannot close that gap we must at least acknowledge i t (Fortune, Vol. 42, 1950). Combs (1971) states that, "What i s communicated i s not necessarily what i s intended but what i s understood" (p. 250). The importance of perception i n communicating with others cannot be overestimated. Studies have shown that when individuals do. not check the.other person's understanding of the s i t u a t i o n , misperception and therefore, i n e f f e c t i v e communica-15 t i o n r e s u l t s . Korsch et a l . (1972) found i n t h e i r study of families of children undergoing hemodialysis that the p r i o r i -t i e s and value systems of the professionals were often at great variance with those of the family. For example, nephrectomy was seen as a step toward r e h a b i l i t a t i o n by professionals but i t was perceived as a loss or setback to the family. The i n v e s t i -gators reported that- they learned to.explore how a p a r t i c u l a r treatment or experience was perceived by the family before assuming i t would be accepted on the terms on which i t was offered. Piaget (1952), i n his pioneering research i n children's cognitive development, has shown that children below the age of seven or eight years are especially prone to misper-ceptions. Cain (1964) found that children's pathological reactions to the death of a s i b l i n g were due to t h e i r distorted concepts of i l l n e s s and death. Child p s y c h i a t r i s t s have stressed the importance of exploring the c h i l d ' s perceptions of events that a f f e c t him so misperceptions can be uncovered and corrected to prevent disturbed reactions (Fraiberg, 1959; Wolff, 1969; Kliman, 1978). Wolff (1969) says children between two and seven years are dependent on adults to help them make sense of t h e i r i l l n e s s . Another important element of e f f e c t i v e communication i s s e l f - d i s c l o s u r e , which i s defined as a voluntary process of 16 revealing one's personal b e l i e f s , values, feelings and percep-tions to another (Jourand, 1971). Research suggests that s e l f -d i s c l o s i n g individuals tend to be emotionally healthier than individuals who do not s e l f - d i s c l o s e (Jourard, 1971; Johnson, 1972). Caplan (1963) states that the two most basic tasks of e f f e c t i v e coping are: (1) active exploration of r e a l i t y and (2) acceptance and expression of a l l feelings both p o s i t i v e and negative. McCallum (19 75) emphasizes the importance of parents helping t h e i r children to learn how to t a l k about t h e i r f e e l i n g s : Most parents say a great deal to the young c h i l d about the world he l i v e s i n , his behavior and t h e i r attitudes towards i t but few parents t a l k to young children about t h e i r f e e l i n g states, 'you seem sad, John', etc. When this i s done i t helps the c h i l d to recognize and i d e n t i f y his emotional experiences and gradually learn to express them i n words ... effectiveness i n communicating his feelings i s one of the most important personal assets a c h i l d can develop (McCallum, 1975, p.74). Other authors have emphasized the importance of parents of chronically i l l children establishing an atmosphere which encourages open communication with both the i l l c h i l d and the well children. Kaplan (1973) stresses that one of the primary tasks of e f f e c t i v e coping i n families with a chroni-c a l l y i l l c h i l d i s that parents gain a r e a l i s t i c understanding of t h e i r child's i l l n e s s and communicate th i s within the 17 family. When parents deny the r e a l i t y of the i l l n e s s and avoid discussing i t , i n e f f e c t i v e coping r e s u l t s . However, as Steinhauser (1972) says: Often parents i n t h e i r anxiety cannot allow the children, including the sick c h i l d , to openly raise any of t h e i r anxieties. Helping the parents face and master t h e i r own anxieties thus pre-paring them to tolerate and deal with the concerns of t h e i r children, can be c r u c i a l i n minimizing serious and long l a s t i n g emotional damage (Steinhauser, 1972, p.327). Several authors have shown a relationship between open communication and e f f e c t i v e coping or, conversely, a r e l a t i o n -ship between poor communication and i n e f f e c t i v e coping (Tropauer et a l . , 1970; Grossman, 1972; Kliman, 1978). Vaughn (1957) found i n his study of h o s p i t a l i z e d children, that those who expressed th e i r feelings and views about the h o s p i t a l i z a t i o n and the operation and had t h e i r mis-perceptions corrected, showed much greater improvement, espe c i a l l y after discharge, than the control group. S i m i l a r l y , Rie et a l . (1964) found that children with rheumatic fever who had opportunities to talk about th e i r feelings and explore t h e i r anxieties had better long term adaptation to t h e i r i l l n e s s than did a control group who did not talk about th e i r feelings. Turk (1964) says the i l l c h i l d i s often aware of the demands his i l l n e s s makes on other family members and i f t h i s 18 i s not talked about openly, everyone becomes locked into a "web of silence," which can impair the psychological functioning of a l l family members. In summary, two aspects of communication theory are pertinent to t h i s study: (1) the important part perception play i n the individual's understanding of a s i t u a t i o n , which has implications for professionals when communicating with parents of chronically i l l children and also has implications for parents communicating with t h e i r chronically i l l c h i l d and thei well children and (2) the importance of helping individuals to express t h e i r feelings and anxieties, etc., which again has implications for health professionals supporting parents i n talking about t h e i r feelings and encouraging them to help t h e i r children to talk about t h e i r f e e l i n g s . Families Coping with a Chronically 111 Child The most c l a s s i c study of families coping with a chronically i l l c h i l d was that of Lindy Burton (1975) who in t e r viewed 53 families of children with c y s t i c f i b r o s i s ( a l l known cy s t i c f i b r o s i s families i n Northern Ireland). Using an i n t e r -view schedule, Burton focused on d i f f i c u l t i e s caused by r a i s i n g a c h i l d with c y s t i c f i b r o s i s and the methods parents had used to overcome these d i f f i c u l t i e s . The findings most pertinent to th i s study were that the majority of parents did not communi-19 cate well with any of t h e i r children about the i l l n e s s . Only 27 percent of parents of school aged children communicated well with the sick c h i l d concerning his i l l n e s s . Out of 58 children with c y s t i c f i b r o s i s only about one half knew what the i l l n e s s was c a l l e d and only one t h i r d knew they would have i t for l i f e . Only one c h i l d out of the entire group had been t o l d the disease was inherited. . Burton- report-ed -that •- . the majority of school aged children said they had never been able to confide i n anyone about t h e i r fears. The most frequent reason given by parents for not talking about the i l l n e s s was t h e i r desire not to hurt the c h i l d . Burton found that the child's prognosis was the biggest stumbling block to communis eating about the i l l n e s s . F i f t y - t h r e e percent of mothers i n Burton's study denied discussing the i l l n e s s with th e i r well children, and i n families where explanations had been given, they were very limited i n nature. Parents r a t i o n a l i z e d that the well children weren't interested because they rarely mentioned the i l l n e s s to parents or questioned them about i t . Yet 39 percent of mothers and 26 percent of fathers said they thought t h e i r well children f e l t l e f t out and r e s e n t f u l . Also 37 percent of mothers and 28 percent of fathers reported t h e i r well children had behavior problems such as rebelliousness, bedwetting, school problems, etc. While this was not a c o r r e l a t i o n a l study, Burton suggests 20 that the parent's evasive and inadequate communication may well have contributed to the problem behaviors reported i n the well children. Burton concluded that i t was obvious that many parents needed help i n answering t h e i r children's questions and in giving age-appropriate explanations. Cytryn et a l . (19 73) found i n t h e i r study of 29 families of children with c y s t i c f i b r o s i s that almost a l l of the parents interviewed were unable or unwilling to talk to the i r ili;.,child about his fee l i n g s . Even factual information was reluct a n t l y or p a r t i a l l y communicated. In none of the cases had parents been given help i n examining t h e i r own feelings or those of t h e i r c h i l d about c y s t i c f i b r o s i s . The authors conclude that the results of t h e i r study indicate that such help should be made routinely available to parents. Unfortunately, the study reported no data on the well children. Binger (1969) conducted a retrospective study of 20 families concerning the impact upon parents of l i v i n g with and having a c h i l d die from leukemia. A l l parents were interviewed by a c h i l d p s y c h i a t r i s t within two years of t h e i r child's death. Parents described the diagnosis of the i r c h i l d as the hardest blow they had to bear throughout the course of the i l l n e s s . In the f i r s t few weeks af t e r the diagnosis, parents related f e e l -ings of depression, anger, h o s t i l i t y and self-blame. Denial was not experienced by these parents but they did report 21 encountering denial of the diagnosis by r e l a t i v e s , e s p e c i a l l y grandparents and friends. Binger found that the grandparents 1 anxieties and lack of knowledge made them i n e f f e c t i v e supports for the parents. Fourteen parents admitted they t r i e d to shi e l d t h e i r c h i l d from the diagnosis; 11 of these children indicated t h e i r sense of impending death. The two families who did talk openly to th e i r c h i l d about his i l l n e s s reported they had a more meaningful rel a t i o n s h i p with t h e i r c h i l d than they had ever had. They attributed this to t h e i r frank discussions and open communication. Parents i d e n t i f i e d as sources of support: each other, personal r e l i g i o u s concepts, the doctor, the s o c i a l worker who offered p r a c t i c a l assistance and a l i s t e n i n g ear and other parents of children with leukemia. However, a few parents did mention th e i r burdens were sometimes increased by inappropriate sharing of sorrows with other parents. A l l f e l t i t was important to treat t h e i r c h i l d normally during the i l l n e s s and a l l expressed a need for more time to talk to doctors about matters other than medical management of the disease. Although the study provided a good delineation of parents' feelings about and reactions to l i v i n g with a chroni-c a l l y i l l c h i l d , i t i s a retrospective study so parents' memories about l i v i n g with the i l l n e s s experience may not be completely accurate. Tropauer et a l . (1970) found i n t h e i r study of c h i l -22 dren with c y s t i c f i b r o s i s and t h e i r mothers that 9 out of 18 mothers said they had no discussion with t h e i r i l l c h i l d or his s i b l i n g s about the i l l n e s s . Several children with serious cases of c y s t i c f i b r o s i s were not even t o l d the nature or s i g n i -ficance of t h e i r i l l n e s s before adolescence. Mothers ra t i o n a l i z e d that this spared the c h i l d unnecessary anguish. These adolescents displayed embarrassment about t h e i r disease and t r i e d to hide i t from t h e i r friends. The authors said i t appeared that the parents 1 patterns of deception and avoidance also became the child's style of coping with the i l l n e s s . Also, in families where there was suppression of feelings and avoid-ance of discussion, projective tests administered to the i l l c h i l d showed fears about dying. Mothers reported that s i b l i n g ' s resentment toward the i l l c h i l d was more open and pronounced than i n families where open discussion prevailed. Many mothers i n t h i s study complained about th e i r husband's lack of p a r t i -cipation i n caring for the i l l c h i l d and his d i s i n c l i n a t i o n to talk about feelings. The authors concluded that, i n families where open discussion and mutual support prevailed, the child's i l l n e s s had l i t t l e disruptive influence on the family whereas the less communicative and less emotionally supportive family members-were with each other, the more l i k e l y they were to exhibit d i f f i c u l t i e s i n adjusting to the i l l n e s s . It i s d i f f i -c u l t to know i f the data from t h i s study are c h a r a c t e r i s t i c of families of children with c y s t i c f i b r o s i s since the families were selected for the study on the basis of t h e i r a v a i l a b i l i t y for p s y c h i a t r i c and psychological examination. Therefore, the selection may have been biased because of families volunteering so they could get help or, conversely, they may have refrained from volunteering due to anxiety about the possible test r e s u l t s . McCallum & Gibson (19 70) studied the adaptation of 56 families to having one or more children with c y s t i c f i b r o s i s ; using detailed questionnaires, i n d i v i d u a l parent interviews and parent group discussions. One of t h e i r findings was that the parents' adaptation to t h e i r child's disease appeared to progress through four main stages: prediagnostic, confrontational, long term adaptive and terminal. In the confrontational stage (when diagnosis was confirmed) findings included parents' denial, detachment, avoidance and repression with prompt forgetting of the physician's communications about the diagnosis. This was often followed by random seeking of information from non-professionals. When parents began facing the r e a l i t y of the s i t u a t i o n a period of mourning ensued. Even with the long term adaptive stage parents fluctuated between denial and mourning. Another finding was that i n each successive phase of the child's development, c r i t i c a l issues arose with which parents had to deal. In infancy, feeding problems, bowel 24 tra i n i n g and resistance to postural drainage were i d e n t i f i e d as problems. Peak periods of protest were between 6 and 12 months and 24 and 30 months. In pre-school years, adjustment problems related to loosening intense attachments to parents were noted. Between 8 and 12 years, two c r i t i c a l issues were i d e n t i f i e d : one; s e n s i t i v i t y about being d i f f e r e n t from peers and resultant embarrassment about the disease and two; the child's emerging awareness of the prognosis. Yet 28 percent of school children were reported to have asked no questions; the other 72 percent asked such questions as: W i l l I ever get over i t ? What i s wrong with my body? W i l l I die from i t ? W i l l I be able to marry? W i l l I be able to have children? W i l l my children have c y s t i c f i b r o s i s ? Approximately one t h i r d of the parents i n McCallum & Gibson's study avoided giving t h e i r c h i l d any information about his i l l n e s s because they feared i t would lead to questions about his prognosis which they would be unable to answer. The authors concluded from t h e i r study that families of children with c y s t i c f i b r o s i s have c r i t i c a l issues to deal with at each stage of the child's development and that medical management, group discussions and parent interviews c o n t r i -buted to parents being able to deal with these issues. The discussion groups held for parents were c a l l e d educational -supportive groups with emphasis placed upon interchanges among 25 members. Discussion included issues such as how to do postural drainage on a n e g a t i v i s t i c infant, how to explain the i l l n e s s to s i b l i n g s or how to deal with the anxieties of r e l a t i v e s . These discussions led to a variety of workable solutions for parents. The authors stressed that although feelings were d i s -cussed, there was a l i m i t to the extent to which anxieties could be explored as they could readily threaten the defenses of others. The data from this study appear to be a r e l i a b l e and v a l i d i n d i c a t i o n of how families adapt to t h e i r child's c y s t i c f i b r o s i s , as the information c o l l e c t e d from each family was derived from at least two of three sources which were compared for i n t e r n a l v a l i d i t y . Although the study i s c a l l e d family adaptation to the c h i l d with c y s t i c f i b r o s i s , there are no data reported on the s i b l i n g s of the i l l c h i l d , even though the families studied included 87 s i b l i n g s . Turk (19 64) i n her study of the impact of c y s t i c f i b r o s i s on family functioning, did investigate how s i b l i n g s were affected along with the other family members. Using a questionnaire with open ended and forced choice questions, she interviewed 28 parents to determine s p e c i f i c areas of s o c i a l and emotional deprivation and problems i n communication between family members. She found that 60 percent of parents never discussed the diagnosis with any of th e i r children, including 26 the well s i b l i n g s . Discussion was limited to the child's treatment and a c t i v i t i e s only. Turk said one would not expect such lack of discussion, especially since well s i b l i n g s were expected to babysit the i l l c h i l d , had t h e i r a c t i v i t i e s res-t r i c t e d because of him, and were deprived of family outings. At the same time, parents voiced concerns about t h e i r well children's behavior such as playing sick to get t h e i r attention. Turk also emphasized that parents f a i l e d to come to grips with these problems saying they would give attention to them l a t e r . Turk recommended from her study that health pro-fessionals must help parents refocus on the needs of the whole family and not just those of the i l l c h i l d . She also recom-mended that parents v i s i t the physician together to prevent misunderstandings and increase appreciation and consideration of one another. This recommendation may have resulted from the father's lack of p a r t i c i p a t i o n i n the study. Only 3 fathers, as compared to 25 mothers, participated. A few studies have focused mainly on the s i b l i n g s of chronically i l l children and the e f f e c t the i l l n e s s has on t h e i r adjustment. Grossman (1972), i n an extensive study of the college aged s i b l i n g s of retarded children, found that e f f e c t i v e coping of the s i b l i n g s correlated p o s i t i v e l y with open discussion of the handicap i n the family. She also found that healthy children sensed th e i r parents discomfort i n t a l k -27 ing about the subject of their retarded brother or s i s t e r so they learned to get th e i r information elsewhere or not at a l l . The main problem with the study i s that i t i s retrospective so the reports of what the s i b l i n g s thought and f e l t may not be an actual factual description of what went on i n the past. Another l i m i t a t i o n i d e n t i f i e d by the author i s the possible bias of the sample due to better adjusted s i b l i n g s volunteering for the study while those who were poorly adjusted may have stayed away. Despite these l i m i t a t i o n s , the data from the study correlated with the author's c l i n i c a l findings over the years: The individuals and families who adapt well to having a handicapped c h i l d are unashamed of the c h i l d , talk openly about his retardation and make a point of educating others about the handicap v. . the extent to which normal s i b l i n g s r e l a t e t h e i r handicapped brother or s i s t e r to t h e i r own outside world by t a l k i n g about him, being seen with him, etc. r e f l e c t s the way the parents deal with that issue (Grossman, 1972, p.81). l i e s (1979) found i n her exploratory p i l o t study of the school aged s i b l i n g s of children with cancer that the pre-v a i l i n g theme of t h e i r experience i n l i v i n g with a s i b l i n g with cancer was one of change, most of which was unexpected and for which there was no preparation. Only one c h i l d reported s a t i s -f a c tion with the information parents gave him regarding the i l l n e s s experience. Several of the children reported that they got t h e i r information and support from sources other than th e i r 28 parents, when they learned they could not get i t from t h e i r parents. One c h i l d reported getting information about her s i b l i n g ' s i l l n e s s at the public l i b r a r y ; the l i b r a r i a n helped her look i t up I When the well s i b l i n g s were asked what would be helpful to them they a l l mentioned either having things explained to them or having someone to t a l k to. l i e s says the data suggest that the Impact of a c h i l d ' s chronic i l l n e s s on healthy s i b l i n g s i s s i g n i f i c a n t . Since the study was only a p i l o t study, the findings cannot be generalized i n any way but they do point to the importance of assessing how well children are coping with the experience of l i v i n g with a chronically i l l s i b l i n g . In summary, the l i t e r a t u r e documents the importance of information seeking and open communication i n e f f e c t i v e cop-ing with chronic i l l n e s s . Studies of families with chronically i l l children demonstrate that many parents have d i f f i c u l t y communicating with t h e i r children about the i l l n e s s . Yet there i s l i t t l e available research on how these families do communi-cate about the i l l n e s s or the kind of guidance they have received from health professionals to help them communicate. These d e f i c i e n c i e s i n the research l i t e r a t u r e lend support to the focus of the present study on how families with ch r o n i c a l l y i l l c hildren communicate about the i l l n e s s and what guidance they have received i n doing t h i s . CHAPTER III METHODOLOGY This study was conducted to describe communication patterns i n families of children with c y s t i c f i b r o s i s and to id e n t i f y what guidance parents had received i n ta l k i n g about the i l l n e s s . The information could best be obtained by using an exploratory descriptive research design (Brink & Wood, 1978). This chapter describes the various aspects of the methodology used to conduct the study: sample selection, data c o l l e c t i o n and data analysis. Sample Selection A random sample was not obtained due to time con-s t r a i n t s and the geographic location of the fami l i e s . A conven-ience sample was selected from the c y s t i c f i b r o s i s outpatient c l i n i c of a large urban h o s p i t a l . Children attend t h i s c l i n i c every three months for routine check-ups. The c r i t e r i a for e l i g i b i l i t y were: the c h i l d with c y s t i c f i b r o s i s had to have been diagnosed for at least one year so usual communication patterns could be established, s i b l i n g s were l i v i n g at home, and the parents had a good command of the English language. The parents of the f i r s t 14 families to meet these c r i t e r i a were approached by the investigator for an interview. The investigator introduced herself, discussed the 30 purpose of the study as outlined i n the l e t t e r of consent (Appendix A) and requested the agreement of both parents to be interviewed. Arrangements were then made to conduct the i n t e r -view at the c l i n i c i n a private o f f i c e , or i f permission was granted, the investigator made an appointment to interview both parents i n th e i r home. Eight parents were interviewed at the c l i n i c and 5 were interviewed i n th e i r homes. Written consent was obtained before each interview began. Only one family re-fused to pa r t i c i p a t e i n the study saying they did not talk about c y s t i c f i b r o s i s i n the family so there was nothing to discuss. Data C o l l e c t i o n The data were co l l e c t e d using a semi-structured i n t e r -view with both open ended and closed questions (See Appendix B). The closed questions were to ensure comparable data while the open ended ones were to avoid r e s t r i c t i o n of responses (Brink & Wood, 1978). Three main content areas were covered i n the i n t e r -view schedule. A l l 3 areas were derived from the l i t e r a t u r e review of problem areas i n communication about chronic i l l n e s s . The f i r s t content area was concerned with knowledge of c y s t i c f i b r o s i s - what the parent's knowledge was and what information they gave the i r i l l c h i l d and t h e i r well children. Items 1 through 7 i n the interview schedule pertained to thi s area. The second content area related to feelings and included questions on how the parents dealt with t h e i r own and t h e i r children's feelings about the i l l n e s s experience. Items 8 through 12 pertained to thi s content area. The t h i r d area c o n c e r n e d g u i d a n c e r e c e i v e d f r o m p r o f e s s i o n a l s i n t a l k i n g a b o u t t h e i l l n e s s . I t e m s 1 3 t h r o u g h 1 5 p e r t a i n e d t o t h i s c o n t e n t a r e a . T h e i n t e r v i e w s c h e d u l e w a s e x a m i n e d b y t h e s i s c o m -m i t t e e m e m b e r s a n d t w o e x p e r t s i n t h e f i e l d , ( a c l i n i c a l n u r s e s p e c i a l i s t a n d a p h y s i c i a n i n t h e c y s t i c f i b r o s i s c l i n i c ) . R e v i s i o n s w e r e m a d e a n d t h e s c h e d u l e w a s t h e n p r e -t e s t e d w i t h 2 e l i g i b l e f a m i l i e s . T h e r e a s o n s f o r t h e p r e t e s t w e r e : 1 . T o f a m i l i a r i z e t h e i n v e s t i g a t o r w i t h t h e u s e o f t h e i n t e r v i e w s c h e d u l e . 2 . T o i d e n t i f y a n y p r o b l e m s t h e p a r e n t s m i g h t h a v e i n u n d e r s t a n d i n g t h e q u e s t i o n s . M i n o r a d j u s t m e n t s w e r e m a d e a n d t h e i n t e r v i e w s c h e d u l e w a s t h e n u s e d w i t h e a c h f a m i l y . E a c h i n t e r v i e w w a s t a p e d a n d t h e t a p e r e c o r d i n g s w e r e t r a n s c r i b e d v e r b a t i m a n d t h e t r a n s c r i p t i o n s w e r e u s e d i n t h e a n a l y s i s . T h e i n t e r v i e w s r a n g e d f r o m 3 0 t o 6 0 m i n u t e s i n l e n g t h w i t h t h e m a j o r i t y t a k i n g a p p r o x i m a t e l y o n e h o u r . E i g h t o f t h e i n t e r v i e w s w e r e c o n d u c t e d i n a p r i v a t e o f f i c e a t t h e c l i n i c w i t h o n l y t h e m o t h e r s p a r t i c i p a t i n g a s t h e y w e r e f r o m o u t o f t o w n . T h e r e m a i n i n g 5 w e r e c o n d u c t e d a t t h e h o m e s o f t h e f a m i l i e s i n t e r v i e w e d . I n 3 o f t h e h o m e i n t e r v i e w s b o t h p a r e n t s w e r e p r e s e n t , i n a f o u r t h o n e , t h e h u s b a n d c a n c e l l e d o u t a t t h e l a s t m i n u t e a n d t h e f i f t h w a s a s i n g l e p a r e n t . Objectivity of the participant investigator was fostered by using the standard interview schedule for a l l interviews and by s e l f - s c r u t i n y of the investigator. One of the pre-test interviews was discarded due to the lack of o b j e c t i v i t y on the part of the interviewer. Also, time was set aside af t e r the interview finished to follow up on any areas i n which the investigator wanted to intervene; for example, when a mother reported that she did:.not know how to deal with her son's anger, the investigator spent time discussing t h i s with her after the interview. To increase v a l i d i t y of the answers given by parents, the investigator worded the questions so they had to state what they had said and not merely that they had said i t ; for example, "Have you explained i l l n e s s to him? What have you said?" Data Analysis The transcribed data from each interview were f i r s t organized into categories based on the content areas of the interview schedule. Then descriptive s t a t i s t i c s such as frequency d i s t r i b u t i o n s , and measures of v a r i a t i o n were applied to the data. In summary, 13 parents were interviewed by the investigator using a semi-structured interview. The purpose of the interview was to e l i c i t data about the communication patterns i n families concerning t h e i r c h i l d ' s c y s t i c f i b r o s i s 33 and what help they had received i n ta l k i n g about i t . The data were analyzed using descriptive s t a t i s t i c s , namely frequency d i s t r i b u t i o n s and r a t i o s . CHAPTER IV RESULTS The f i r s t purpose of t h i s study was to describe family communication about a .child's chronic i l l n e s s . The second pur-pose of the study was to i d e n t i f y what guidance parents had re-ceived or would l i k e to receive from health professionals on communicating about c y s t i c f i b r o s i s . Description of the Sample Fourteen families were approached by the investigator, one.of which refused, saying they did not talk about c y s t i c f i b r o s i s i n the family. Two of the remaining 13 were p i l o t tested, one of which was discarded due to s u b j e c t i v i t y of the interviewer. One other interview had to be discarded due to sound d i f f i c u l t i e s with the tape. This l e f t 11 families for the sample, and included 40 family members. In 9 of the fami-l i e s only the mother was present for the interview. Two of the mothers were single parents, 4 were from out of town and t h e i r husbands were not with them, one woman's husband cancelled at the l a s t minute and 2 others said t h e i r husbands would not want to p a r t i c i p a t e . In the remaining 2 families both husband and wife were present but one was a blended family with a stepmother, so the father did most of the tal k i n g . For purposes of c l a r i t y i n reporting the r e s u l t s , these 2 interviews were considered as 35 one parent each since either husband or wife answered the ques-tions and there were no disagreements. c h i l d with c y s t i c f i b r o s i s and one or more s i b l i n g s . In one family with 2 children, both had c y s t i c f i b r o s i s . As shown i n Table I the age range of the 7 g i r l s and 5 boys with c y s t i c f i b r o s i s was from 5 to 16 years with the mean age being 10.4. As Table II shows, the age of diagnosis ranged from b i r t h to 12 years with the mean age being 3-1/2 years. Table III shows that the number of s i b l i n g s ranged from 1 to 5 and t h e i r ages' ranged from 3 to 21 years. A l l 11 families consisted of one or both parents, the TABLE I Sex and Age of Child: with Cystic F i b r o s i s Family Sex of Child Age of Chi l d i n years 1 2 3 4 5 6 7 8 9 10 F F F M M F F M F M F M 11 16 12 11 14 11 8.5 11.5 7 8 5 11 7.5 36 TABLE II Age at Diagnosis Child's Age at Family Diagnosis (in years) 1 4.4 2 4 3 .4 4 .8 5 12 6 3 7 2 3 .5 9 Bi r t h 10 7 5 11 3 TABLE III Number and Age of Siblings Family Number of Siblings Ages i n Years 1 1 7 2 5 21, 19, 18, 13, 11 3 1 14 4 1 14 5 1 16 6 2 4, 3 7 2 11, 2.6 8 2 20, 18 9 1 8.6 10 11 1 9 37 Findings The.'.literature review suggested that families of a c h i l d with c y s t i c f i b r o s i s do not openly discuss the i l l n e s s within the family. The facts of the disease are often with-held from the children and the feelings created by the i l l n e s s are not talked about. Items 2 through 12 of the interview schedule were designed to gather these data. Item 1 was to te s t parents'knowledge of the disease and Items 13 through 15 were designed to i d e n t i f y what support parents had received i n talking about the i l l n e s s and what would have been h e l p f u l . The 11 families interviewed described d i f f i c u l t i e s i n one or more areas of communicating about the i l l n e s s . Parents' Knowledge of Cystic F i b r o s i s (Item 1) Only one parent out of 11 could be described as having a poor understanding of c y s t i c f i b r o s i s . To her c y s t i c f i b r o s i s was "stomach problems, constant colds and her digestive system i s a l l screwed up." Of the other 10 families, parents' know-ledge ranged from a f a i r understanding of basic facts to a detailed knowledge of c y s t i c f i b r o s i s , including current ..v research i n the f i e l d . One parent described the lung involve-ment and digestive problems but did not understand the hereditary factor. Another described the d i f f i c u l t i e s with the mucus producing glands but did not understand how organisms affected 38 the lungs. Three of the parents were very knowledgeable and the other 5 parents had a good understanding of the basic f a c t s . Explaining Cystic F i b r o s i s to the 111 Child (Item 2) The researcher investigated how parents explained the disease to t h e i r c h i l d with c y s t i c f i b r o s i s as well as the other children i n the family. For purposes of c l a r i t y , the two w i l l be described separately, with how parents explained the disease to the c h i l d with c y s t i c f i b r o s i s being described f i r s t . Parents varied greatly i n the extent of t h e i r explanations, from t e l l i n g t h e i r children everything about the i l l n e s s to answering t h e i r questions.only, without expanding on them. A l l 11 parents said they gave t h e i r children some explanation of the disease, a l b e i t , i n some instances, very b r i e f and a l l f e l t they had to l d them enough. A l l parents mentioned the name of the disease to t h e i r children. Some parents waited for th e i r children to ask ques-tions and u t i l i z e d t h i s as a beginning point to explain the i l l n e s s . This often occurred around 3 or 4 years of age, i f the c h i l d was diagnosed i n infancy. The explanation parents gave at this time was usually b r i e f and evolved into more com-pli c a t e d explanations as the c h i l d got older and asked more: When she was around 4, she started asking questions. I just t o l d her i f she didn't take p i l l s , she'd have a 39 stomach ache. I don't think she'd have understood more. I think you can overburden a c h i l d with facts . Children are i n c l i n e d to ask when they are ready. Now that she's getting older (8h years) she has a l o t more questions. As soon as he was able to ask me ques-. tions (3 years) I t r i e d to explain i n terms that he would understand, what what was happening to him and why we were doing c e r t a i n things (like pound-ing his chest). As he's grown older and been able to understand i n more depth, we've talked about i t i n more depth. I think t h i s has gone a long way i n a l l e v i a t i n g any fears he might have about his condition. At 3 years I just gave a b r i e f explana-ti o n 'your chest i s not l i k e other people's and physio w i l l keep i t well.'• We are gradually feeding him more and more every year. For instance he r e a l -izes now that his stomach st i c k s out so I explained why or he talks about being thin and I say that's because of such and such. Other parents said they did not explain the i l l n e s s at any s p e c i f i c age but that i t had just evolved over the years: Not that I've sat down and said you have c y s t i c f i b r o s i s and this i s what i t i s . It's something we've just grown up with. We just sort of s l i d into i t . I t wasn't any big deal l i k e 'you have this disease c a l l e d c y s t i c f i b r o s i s ' - the name was there i n the house, the doctor v i s i t s , the c l i n i c I don't think I ever sat down and said 'I'm going to explain i t to you.' It's 40 just b i t by b i t , a gradual breaking i n . We don't put any great emphasis on i t . That's l i f e . Not that we've sat down and explained. It sort of evolved through the years with us tal k i n g about i t . In contrast to these parents,2 of the families presented th e i r children with a l l of the facts: I explained everything from day one. If she could t a l k , she could understand. I never held anything back, including her l i f e expectancy. He was diagnosed when he was 12 years old and I asked the doctors to explain i t f u l l y i n front of him. I f e e l at his age he's old enough to take honesty and with i t h e ' l l have no questions lurking i n the back of his mind that w i l l frighten him more. Despite the conviction of these 2 parents that explaining i t f u l l y was the best way to handle i t , the one main theme which seemed to emerge from the other parents was how much to t e l l t h e i r children, e s p e c i a l l y i n regards to l i f e expectancy. The following statements c l e a r l y indicate the struggle these parents go through i n making that decision: I know some mothers who don't believe i n l e t t i n g t h e i r c h i l d know anything. I think th i s i s wrong but I do believe strongly i n not overdoing i t . The only thing I can compare i t to i s sex. You don't want to say too much and you don't want to say too l i t t l e . It's hard to f i n d a happy medium. You 41 don't want to say you won't grow up but you can't say everything i s okay. Kids aren't stupid. They know. Close friends of ours had a daughter who died of c y s t i c f i b r o s i s - that was very hard to explain to our kids without scaring them or giving them too much information. I r e a l l y don't know how we did i t . Every piece of c y s t i c f i b r o s i s l i t e r a -ture I've read seems to s t i c k out with the words 'this usually f a t a l disease.' I never say anything to my son (14 years) but I'm sure he's seen some of i t because as soon as he sees the words c y s t i c f i b r o s i s he immediately reads i t . But I don't think i t s t icks out for him l i k e i t does for me because I've t o l d him he has a mild case and these words only apply to severe cases. In the beginning we t o l d him (at 7 years) that he would outgrow i t but the nurse con-vinced us we should t e l l him the truth before he found out. So I went back and to l d him 1 1d been talking to the doctor and I had made a mistake - that he wouldn't outgrow i t . He's never asked about l i f e expectancy but I think I t o l d him he'd l i v e to be an old man. One parent voiced with honesty-, what seemed to be the fear of most: My biggest fear i s that h e ' l l f i n d out he doesn't have as long a l i f e expectancy as other children. That's my biggest fear, t e l l i n g him or r e a l i z i n g he has discovered i t . I can't even foresee what I would say. I would l i k e to think I would be honest but I don't know. Only one parent.out of 11 had to l d his c h i l d (7 years).. 42 that she might not l i v e as long as other children. He f e l t that i f she grew up with the fa c t s , even i f she didn't f u l l y under-stand them, i t would be less traumatic than laying a heavy t r i p on her "when she' became a teenager." He compared i t to the trauma of a c h i l d finding out she's adopted i n adolescence. Explaining the Il l n e s s to Siblings (Item 2) Nine of 11 families said they gave a l l th e i r children the same explanation, the most frequent reason being that they were a l l present when the i l l n e s s was talked about. Only one mother s p e c i f I c a l l y emphasized the importance of age -appropriate explanations. She stressed that she explained to each c h i l d at the age l e v e l she f e l t they were able to under-stand. Another mother said that the same explanation to both her children was fine u n t i l her well c h i l d went to school. At that time the children i n his class made remarks which upset him so she had to give him a more thorough explanation. For instance, he came home one time very upset because someone t o l d him his s i s t e r was going to die. He was only 7 and he thought i t was going to happen r i g h t then. He thought he'd come home one day and she'd be gone. Only 4 of 11 mothers said they had to repeat th e i r explanations because questions kept coming up, or the children would often forget what they were t o l d . Also, as one mother 43 p o i n t e d o u t , b e c a u s e m i s c o n c e p t i o n s e x i s t a b o u t c y s t i c f i b r o s i s , i f h e r c h i l d r e n saw s o m e t h i n g l i k e t h a t t h e y a l w a y s came and a s k e d a g a i n . A n o t h e r a s p e c t o f e x p l a i n i n g t h e i l l n e s s t o c h i l d r e n was how p a r e n t s h a n d l e d t h e e v e n t o f t h e i r i l l c h i l d b e i n g h o s p i t a l i z e d , b o t h w i t h h i m and t h e w e l l c h i l d r e n . F o u r o f 11 p a r e n t s s a i d t h e y e x p l a i n e d i n d e t a i l t o t h e i l l c h i l d and h i s s i b l i n g s t h e r e a s o n f o r t h e h o s p i t a l i z a t i o n and what was g o i n g t o happen. They e x p r e s s e d s i m i l a r r e a s o n s f o r d o i n g t h i s - as l o n g as t h e c h i l d r e n knew ahea d o f t i m e t h e y were f i n e b u t i f t h e y d i d n o t know t h e y became f e a r f u l and unco-o p e r a t i v e . Two p a r e n t s s a i d t h e y d i d n o t t e l l t h e i r i l l c h i l d o r h i s s i b l i n g s ahead o f t i m e and b o t h r e p o r t e d t h a t t h e i r c h i l d r e n were v e r y f r i g h t e n e d o f h o s p i t a l s . The o t h e r 5 p a r e n t s gave some e x p l a n a t i o n t o t h e i r c h i l d r e n and r e p o r -t e d t h a t t h e r e were no p r o b l e m s w i t h them. Two o f t h e s e m o t h e r s e m p h a s i z e d t h e i r c h i l d ' s m a t u r i t y (12 y e a r s and 16 y e a r s ) as a m a j o r f a c t o r i n t h e i r a d j u s t m e n t t o h o s p i t a l . O n l y 2 f a m i l i e s r e p o r t e d n e g a t i v e r e a c t i o n s i n t h e s i b l i n g s o f t h e i l l c h i l d . I n b o t h t h e s e i n s t a n c e s t h e s i b l i n g s were a f r a i d t h e i r b r o t h e r o r s i s t e r : w o u l d n o t come home a g a i n . T h i s c o i n c i d e d w i t h t h e i r r e a l i z a t i o n t h a t t h e i l l c h i l d c o u l d d i e . However, t h e p a r e n t s i n b o t h f a m i l i e s t a l k e d o p e n l y t o t h e s i b l i n g s a b o u t i t and s a i d t h e f e a r p a s s e d . 44 Parents were also asked what they had explained to the i r children about c l i n i c v i s i t s . In 8 of 11 families the sib l i n g s of the c h i l d with c y s t i c f i b r o s i s would occasionally go to c l i n i c with him. If they asked questions at that time the parents said they answered them. Often they just sat and watched, saying l i t t l e . When they didn't go to c l i n i c the c h i l d with c y s t i c f i b r o s i s often came home with an explanation of what he/she had done. Only one of the parents reported that her well c h i l d would not go to the c l i n i c with them or even tal k about the i l l n e s s (she i s 16 years). The parent explained th i s behavior as res u l t i n g from a fear of doctors and hospitals. Checking Children's Understanding of the Illn e s s (Item 3) Only 2 of 11 families said they had checked t h e i r children's understanding of the i l l n e s s . One parent said that when i t became evident that i t was a b i t of a problem around school age, she and her husband t r i e d to get the explanation down to about 4 sentences so that t h e i r c h i l d could almost give i t off by heart. This same mother said she would l i s t e n to the explanations he gave his friends and i f he was having d i f f i c u l t y she would step i n and help him with the explanation. Are Parents Uncomfortable Talking About the Illnes s? (Item 4) Only one of 11 parents said she was uncomfortable 45 t a l k i n g about the i l l n e s s and gave as her reason the fear of saying the wrong thing and causing her son to worry about i t s i l e n t l y . Although 10 of the parents said they werenot uncom-fortable t a l k i n g about i t , most q u a l i f i e d this i n some way. One mother said she used to be uncomfortable ta l k i n g about i t but once she and her husband "got straight in-.our. own. minds-how we f e l t about i t , w.e didn't have any problems .explain-ing i t to the kids..;". Another mother said she had no d i f f i -culty talking about i t when her son was well but she couldn't talk about i t when he was i l l because she was too upset. Another said she didn't put too much focus on i t because she didn't want to make her daughter f e e l depressed. Another mother said she was not usually uncomfortable but she did have a d i f f i c u l t time explaining to her children about th e i r friend's daughter who died from c y s t i c f i b r o s i s . Questions Asked by the Children (Item 5 , 6) Two parents reported that none of t h e i r children asked questions about c y s t i c f i b r o s i s . One of these mothers f e l t they just understood i t , so they didn't need to ask ques-tions. The other one said, "She's too young (11 years), I figure i n due time s h e ' l l ask." In both of these families when asked i f the i l l n e s s had been explained, the mothers said i f questions were asked, they were answered. Since there were no 46 questions i t seems doubtful that i t was talked about. Two other parents wondered at the infrequency of questions from t h e i r c h i l d since they were bright and i n q u i s i t i v e i n other areas. However, both said they did not encourage questions, just answered them. The questions asked by children i n the other families seemed to f a l l i nto 2 main categories: The why questions of the 3 to 5 year olds, - Why do I have i t ? Why do I have to take p i l l s and my friends do not? Why do I have to go to hospital? Why am I sick a lot? and the more searching ques-tions of the 11 to 13 years olds; W i l l I die? Who w i l l do my therapy once I leave home? Can I marry and have a family? Who w i l l take care of me when I am older? W i l l my babies be sick? Would you s t i l l have adopted me i f you had known I had c y s t i c f i b r o s i s ? Some of the mothers mentioned that t h e i r children accepted i t more matter of f a c t l y when they were younger but as they mature they are becoming more aware and asking more questions, es p e c i a l l y around the age of 11 to 12 years. One mother said her son did not ask questions when he was young because he was well. I t was only when he became sick, at about 11 years, that he asked i f he was going to die. Parents were asked i f they thought t h e i r children were getting information other than from them. Only 2 said they did not think so, 3 others were unsure but the other 6 named s p e c i f i c instances where t h e i r children picked up 47 information - c y s t i c f i b r o s i s mail, T.V., c l i n i c , summer camp. One mother said, "I know i t must be hard for the kids when someone who was at camp the year before doesn't show up because they've passed away." Another said: He c e r t a i n l y gets information at the c l i n i c , even i f he doesn't hear any-thing, he sees - some of the children who aren't so well; the coughing. An issue of concern to some parents i n regards to th e i r children getting information elsewhere, was how to screen the information reaching the c h i l d . Two mothers said they screened the c y s t i c f i b r o s i s mail and i f there was anything frightening, they did not l e t t h e i r children see i t . Another mother was concerned about the information her c h i l d picked up at the c l i n i c : For years I've fought what they would say i n front of that c h i l d and then give him back to you. I don't think they have the r i g h t to do that. I mean the parents are the ones that have to l i v e with i t . Parents were also asked i f they encouraged t h e i r children's questions. Only parents i n 2 families said they actually brought the subject up for discussion. Eight parents said they answered t h e i r children's questions when asked and one parent said she did not encourage t h e i r questions since c y s t i c f i b r o s i s was just a normal part of th e i r circumstances. Parents' Conversation About the Il l n e s s (Item 7) Four parents said they did not talk about t h e i r 48 ch i l d ' s i l l n e s s with one another, although they had when the c h i l d was f i r s t diagnosed. As one mother said, "We talked a.lot i n the beginning because the biggest thing was just accepting i t . " Another said, "We talked when she was diag-nosed but now we just do what we have to and don't dwell on i t . " For another family, most of the t a l k i n g centered around the mother's second pregnancy: " I t was always, 'I wonder,icould we handle i t again, go through i t again.'" Three other parents said they discussed only factual things about c y s t i c f i b r o s i s - the meetings, the c l i n i c v i s i t s , the treatments, etc.; although with one family the "facts" became a battleground. Neither husband nor wife wanted to do the c h i l d ' s physio so they argued a l o t about whose turn i t was. Only 4 of the parents admitted to t a l k i n g about the feelings of having a c h i l d with a chronic i l l n e s s . One mother expressed what others seemed to f e e l : Probably the biggest thing we s t i l l discuss are the fears of A. getting sick. I know when he's been sick how hard i t i s . It goes on and on, and gets pretty scary because you don't know where i t ' s leading. The fears are talked about, esp e c i a l l y then - I think there i s more of a tendency to have those kinds of discussions when he's sick. 49 Another mother said: I get concerned about the future. R. missed 45 days of school l a s t year and th i s year he's missed a f a i r amount. I keep think-ing, 'how's he going to manage es p e c i a l l y when he gets to junior high.'1 My husband just says, 'We'll work out those problems when we get there.' As well as discussing the fears of t h e i r c h i l d get-ti n g sick, parents also focus on what they can do to keep t h e i r c h i l d well: When he's well, the things we discuss are keeping him well - whether i t ' s okay for him to play soccer i n the pouring r a i n . You don't want to single him out but whether you should or whether you shouldn't. Do parents have t h e i r conversations about c y s t i c f i b r o s i s i n front of t h e i r children? If so, are they included i n the conversation? Only 3 parents showed an awareness of not talking about cert a i n t h i n g s - i f the children were around. They emphasized saving such conversations for private times, and otherwise including the children i n t h e i r conversation about c y s t i c f i b r o s i s . As one mother said: If we're discussing i t and they're around we include them but we f e e l that way about any conversation i n our house. In contrast, 3 parents admitted to discussing sensitive 50 issues when the children were around without including them. Parents Talking About Their Feelings (Item 8) Six parents said they did not tal k about t h e i r f e e l -ings and the most frequent reason given was that t h e i r spouses would not talk about i t with them. One woman said, "I need to talk about i t but my husband just turns away from me." Another woman said: My husband wouldn't talk about i t at a l l and I became very depressed. I didn't want my son to see i t so I kept quiet. Another said they were just not a family to talk things over. Her husband just ... "figures I w i l l be looking aft e r i t and that i s the way i t i s with most things." One woman talked of the d i f f i c u l t i e s of.-being a single parent: It's tough when you're on your own. I would l i k e to be able to talk to my si s t e r s about B. but they don't want to discuss i t . One just t o l d me 'I can't handle i t . I don't want to hear about i t . ' My brother doesn't want to talk - nobody wants to talk . No, I don't have anybody and you learn that over the years. Of the 5 parents who did talk about t h e i r f eelings, i t was usually with t h e i r spouse. Two of them mentioned th e i r 51 d o c t o r and o t h e r p a r e n t s o f c y s t i c f i b r o s i s c h i l d r e n as good r e s o u r c e s f o r d i s c u s s i n g f e e l i n g s . One p a r e n t e x p l a i n e d why h i s d o c t o r was an i m p o r t a n t r e s o u r c e f o r him: The o n l y o t h e r p e r s o n I r e a l l y t a l k t o I i s Dr. D. The one t h i n g I l i k e a b o u t h i m i s h e ' s a s t r a i g h t s h o o t e r . He d o e s n ' t h i d e a n y t h i n g . H e ' l l t e l l y o u and t h a t ' s r e a l l y t h e o n l y way I want t o h a n d l e i t . T h r e e p a r e n t s m e n t i o n e d t h a t t h e i r f r i e n d s and o t h e r e l a t i v e s were n o t good r e s o u r c e s f o r t a l k i n g a b o u t t h e i r f e e l i n g s : T h e r e were p e o p l e who d i d n ' t want t o l i s t e n . I t h i n k some o f o u r f r i e n d s p u r p o s e l y s t a y e d away b e c a u s e t h e y d i d n ' t want t o l i s t e n . My husband's f a m i l y won't t a l k a b o u t i t . I n f a c t p a r t o f t h e i r f a m i l y d o n ' t e v e n r e a l i s e B. i s s i c k ... I have f r i e n d s b u t i t ' s s o m e t h i n g y o u d o n ' t u n l o a d on f r i e n d s . You d o n ' t want t o d r a g them down w i t h y o u . You c a n ' t t a l k t o y o u r f r i e n d s a b o u t i t b e c a u s e y o u won't have f r i e n d s t o o l o n g . Do p a r e n t s s h a r e t h e i r f e e l i n g s w i t h t h e i r c h i l d r e n ? S i x p a r e n t s s a i d t h e y d i d n o t s h a r e t h e i r f e e l i n g s w i t h t h e c h i l d r e n . As one p u t i t , "No, t h e y c a n ' t c o p e w i t h i t . " Of t h e o t h e r 5 p a r e n t s who d i d s h a r e t h e i r f e e l i n g s , 3 t h e s e q u a l i f i e d t h e i r , " y e s " , by s a y i n g t h e y s h a r e d i f t h e y were i n a bad mood; f o r i n s t a n c e . O n l y 2 p a r e n t s a d m i t t e d t o 52 s h a r i n g t h e i r f e a r s w i t h t h e i r c h i l d r e n : Once I was c r y i n g and she (5 y e a r s ) a s k e d me why was I so w o r r i e d a b o u t h e r and I j u s t t o l d h e r t h a t h e r l u n g s were i m p o r t a n t and I d i d n ' t want h e r t o g e t s i c k . Sometimes when I g e t s c a r e d I g e t c r o s s and I ' l l s ay 'come on, c o u g h , cough, c o u g h ' . I j u s t g e t so f r u s -t r a t e d b e c a u s e I c a n ' t seem t o g e t t h e mucus up. Then I ' l l a p o l o g i z e t o him f o r g e t t i n g c r o s s and j u s t t e l l h i m why - t h a t I'm w o r r i e d t h a t h e ' l l have t o go i n t o h o s p i t a l . T a l k i n g t o t h e 111 C h i l d A b o u t H i s F e e l i n g s (Item 9) S i x p a r e n t s s a i d t h e y d i d n o t t a l k t o t h e i r c h i l d w i t h c y s t i c f i b r o s i s a b o u t h i s f e e l i n g s . The r e a s o n s g i v e n were v a r i e d . One p a r e n t s a i d h i s c h i l d was t o o young y e t t o have many f e e l i n g s a b o u t h e r d i s e a s e (7 y e a r s ) . A n o t h e r s a i d t h e i r c h i l d r e n d i d n ' t seem t o g e t u p s e t (5 y e a r s , 8 y e a r s ) . One m o t h e r t h o u g h t i t was b e t t e r n o t t o d w e l l on f e e l i n g s s o i f h e r d a u g h t e r l o o k e d "down" she w o u l d s a y o r do s o m e t h i n g t o s h i f t h e r mind f r o m i t . I n c o n t r a s t , a n o t h e r mother t r i e d t o t a l k t o h e r d a u g h t e r b u t she s a i d i t was l i k e t r y i n g t o t a l k t o a b r i c k w a l l , "she j u s t s h u t s h e r s e l f o f f and k e e p s s a y i n g , ' w e l l , I'm n o t s i c k . " ' . A n o t h e r mother a t t r i b u t e d h e r s o n ' s (8 y e a r s ) r e l u c t a n c e t o t a l k a b o u t f e e l i n g s t o , "boys a r e l i k e t h a t . " She went on t o say t h a t she made v e r y s u r e t o e x p l a i n e v e r y t h i n g t o h im e v e n when he w a s n ' t l o o k i n g f o r answers o r 53 information; because as much as he l i k e d to play "Mr. Cool," inside a l l kinds of things could be worrying him. Only one of the parents said she didn't talk about feelings with her c h i l d , because she didn't think she could cope with i t . This was a mother whose 11 year old son had suddenly said to her, "I hate you for giving me t h i s disease and I'm going to die when I'm 12." Up u n t i l that point he had never talked about his i l l n e s s and his mother was confused as to what had prompted this outburst: I don't know why he said this to me ... inside i s he r e a l l y thinking that th i s i s what i s going to happen or i s he questioning the ads he's seen or things he's picking up at the c l i n i c and not wanting to believe i t but testing me? I don't know. I wish I could open his brain and see what's going through his mind. He's a very clever boy and I wonder why he hasn't asked more questions and why a l l of a sudden there's a f l a r e up l i k e that. She was very upset about how she had handled the s i t u a t i o n and f e l t she had not said the r i g h t thing. She asked him where he got the idea that he was going to die the next year but he wouldn't discuss i t after that. Since then she said: I ' l l ask him sometimes i f something i s wrong and h e ' l l say 'no'. I won't say anything more. ... maybe because I can't cope with i t myself. I can under-54 stand the anger. Someone has to be there for him to take his anger out on. That doesn't bother me. What bothers me i s 'how do I answer him'? I'm very t e r r i f i e d to open my mouth i n that I might just send him of f on another frenzy. I'm not a psychia-t r i s t , I haven't had any tr a i n i n g i n what to say to someone, es p e c i a l l y someone you love so much. Of the 5 parents who said they did talk to t h e i r i l l c h i l d about his feelings, the most common feelings they reported t h e i r children experiencing were anger, depression, fear and embarrassment. Two mothers said they had long talks with t h e i r children at nights when they were up doing physio because of a cold. One said, "When he's sick, he's a l i t t l e more open, maybe because we spend a l o t of time together." Another said, "When she's sick she gets scared and we talk about i t . " Two other mothers said they acknowledged t h e i r children's feelings when they got upset but didn't discuss them at any length. One said, "I t e l l her I don't blame her for feel i n g frustrated and mad at having to have treatments a l l the time. Then she usually goes out and jumps out her frustrations on the trampoline." The other mother said "I just t e l l her that i t ' s okay to f e e l bad, I understand." One mother t e l l s how receiving some guidance helped her to deal with her, son's feel i n g s : T. (14 years) has very angry moods 55 sometimes. I remember one day i n p a r t i c u l a r . He was so angry at every-thing. Nothing came out but f r u s t r a -t i o n and anger for 2 or 3 days. I had been trying to reach him saying, 'What i s making you so mad?' 'Why are you acting l i k e t h i s ? ' F i n a l l y , I was just about desperate and the c y s t i c f i b r o s i s newsletter came and there was an a r t i c l e i n i t , written by a nurse on anger - how i t a f f e c t s the c h i l d and how i t affects the parents. I t t o l d me everything I needed to know - that he was angry at his disease and maybe at his parents for giving i t to him. I talked to him about that and you know the anger just faded away. I t was gone with that l i t t l e talk and yet i t had been so hard to f i n d the key. The f e e l i n g most frequently mentioned by parents was t h e i r child's embarrassment over his disease. Even parents who said they didn't talk about feelings mentioned t h e i r children's behavior i n respect to trying to hide his disease from his friends. This embarrassment was c l e a r l y age related, beginning usually around 6 or 7 years and l a s t i n g u n t i l 11 or 12 years, at which time the c h i l d began to test his friends by sharing his secret with one of them. If there were no repercussions from l e t t i n g the secret out he/she usually became more open. One mother t o l d how her daughter began th i s testing at 11 years: She used to say when she met someone new, 'I'm not going to t e l l them what I have or they won't be my f r i e n d . ' She seems to be getting over that because she just met someone new and 56 she t o l d her what she had and then said 'She's going to be my frie n d anyway.1 Another mother said her son, 11% years old, hid i t u n t i l recently when he and his frie n d were watching the Handi-cap Olympics on T.V. and he then took his p i l l s i n front of his f r i e n d . She thought i t might have been related to the fact that his frie n d seemed very compassionate toward the handi-capped and her son f e l t he would accept i t . Two other parents mentioned that, when the i r children were around 4 or 5 years, they had been quite proud of the fact that they had something no one else had. That changed, however, when they reached 7 or 8 years, and they no longer wanted to talk about i t . Another parent said her daughter who is 5 years s t i l l t e l l s her friends; i n fact, i n a show and t e l l session at kindergarten, she did physio on her classmates. Parents varied i n t h e i r way of handling t h e i r c h i l d ' s embarrassment. While some respected t h e i r child's wishes and didn't mention the disease, others refused to go along with i t . One mother said: He (12 years) wouldn';t carry his own p i l l s because they r a t t l e d i n his pocket. If we ate out I had to pass the p i l l s under the table because he didn't want anyone to see him take them. I used to go along with him but f i n a l l y I thought, 'No, I'm acting as 57 though there i s something to be ashamed of so I passed them over the table and said, I'm not going to hide these anymore, T., I have nothing to hide.' He gave me a funny look but now he takes them i n public. Talking to the Well Children About Their Feelings (Items 1 0 , 1 1 , 1 2 ) Six parents said they didn't think t h e i r well children f e l t jealous or resentful of the time they spend with t h e i r c h i l d with c y s t i c f i b r o s i s . The fights the children had were attributed to normal s i b l i n g r i v a l r y and nothing was made of them. The reasons parents gave for t h i s lack of resentment were: age of s i b l i n g s , spouse involvement, size of family and amount of time spent with the c h i l d with c y s t i c f i b r o s i s . For example, jealousy was much less l i k e l y to occur i n a large family where children were used to sharing time and attention, whereas with only 2 children, the well c h i l d would be much more aware of the time and attention spent on the other c h i l d . Another example i s i f the c h i l d with c y s t i c f i b r o s i s has been generally well, t h i s would involve much less of the parents' time and energy than i f the c h i l d was frequently sick. One mother explained why she thought her husband's involvement was an important factor i n preventing problems i n t h e i r well c h i l d : My husband helped a l o t . He would take X (well child), f i s h i n g or for long walks i n the woods. He pro-58 vided a l o t of one to one for him that I was unable to provide. Then he would sometimes take over with W (sick child) to give me the opportunity to spend time with X. Five parents f e l t t h e i r well children did mind the time they spent with t h e i r c h i l d with c y s t i c f i b r o s i s . This was indicated by t h e i r children's bids for attention through acting out, as well as th e i r verbal expression of resentments against the i l l c h i l d . Parents generally handled t h i s by explaining to t h e i r children why they had to spend more time with t h e i r other child:.and making a conscious e f f o r t to spend extra time with th e i r well children. One mother said they learned very quickly not to commit themselves to taking the children somewhere because sometimes t h e i r c h i l d with c y s t i c f i b r o s i s just wasn't well enough and then t h e i r other c h i l d would be disappointed and rese n t f u l of her for s p o i l i n g the outing. Another mother took her well c h i l d to the hospital with her and the i l l c h i l d so she could maintain contact with both of them. One parent i d e n t i f i e d as a source of jealousy th e i r friends' extra attention to t h e i r c h i l d with c y s t i c f i b r o s i s while almost ignoring the other c h i l d : ... That has been a big problem with the kids. When r e l a t i v e s or friends 59 come to v i s i t they say 'Oh, how i s J.' and give her a big hug and kiss and then say 'Oh, h i , B.' This can r e a l l y present a problem to the other c h i l d . Another parent talked of how her sick c h i l d used his i l l n e s s to get his own way: G. also had asthma and i f he got emotionally upset i t got worse so i f T. had a toy and G. wanted i t , he kind of had T. over the bar r e l and me too i n a l o t of ways, so T. had trouble holding back and;;inot pushing him around. He'd give i n and f e e l annoyed about i t . Three parents said they involved t h e i r well c h i l d i n helping with t h e i r i l l child's treatments. One boy who was 8% years had been responsible for seeing that his s i s t e r , 7 years, took her p i l l s . Another c h i l d who was 7 years sometimes gave physio to her 11 year old s i s t e r , and a t h i r d g i r l (9 years) was asked to show extra care and understanding when her brother was crabby because he wasn't fe e l i n g well. Only one of these parents f e l t some reluctance to giving her well c h i l d extra r e s p o n s i b i l i t y : "I don't l i k e to put pressure on her to f e e l that she always has to be caring, but when he's not f e e l i n g well ..." Two of these 3 parents were i n the category of parents who f e l t t h e i r well children did resent t h e i r time and atten-tion with t h e i r c h i l d with c y s t i c f i b r o s i s . 60 Receiving Guidance From Professionals (Item 13, 14) One parent only said she had been given guidance s p e c i f i c a l l y related to discussing c y s t i c f i b r o s i s with her children. This was i n Montreal when her c h i l d was diagnosed and she and her husband were given a questionnaire guide to f i l l out. It included questions they might have about the disease. They were to study i t , f i l l i n the answers and then discuss with t h e i r doctor about how to handle i t and what to say, etc. Of the 10 parents who said they had not been given s p e c i f i c guidance, 2 said they had been given a l o t of informa-ti o n when the i r c h i l d was diagnosed but they could not remember most of i t : It was explained to us thoroughly i n the beginning but i t was kind of a shock to s t a r t with. We t r i e d to grasp as much as we could i n one hour but we went out with our heads spinning. When you're upset l i k e that someone can talk to you for hours and you don't remember. We had so many questions afterwards. None of the parents had received information on age-appropriate explanations for t h e i r children and while most had no comment on whether i t would have been h e l p f u l , one parent said i t d e f i n i t e l y would have been, "I just stumble along and play i t by ear." Another parent f e l t the opposite way: 61 Nobody has and I d o n ' t t h i n k anybody c a n o r s h o u l d . I d o n ' t t h i n k anybody has t h a t r i g h t . I t ' s y o u r c h i l d and y o u d e c i d e when t h e y a r e r e a d y . P e o p l e a r e so d i f f e r e n t . I t depends on t h e c h i l d , what he c a n h a n d l e . I mean how c a n t h e y come o u t w i t h a p a m p h l e t t h a t s a y s 'Your f o u r y e a r o l d s h o u l d have t h i s much i n f o r m a t i o n a b o u t c y s t i c f i b r o s i s . ' A c h i l d t h a t i s e m o t i o n a l l y u n s t a b l e c a n ' t h a n d l e i t a t f o u r y e a r s . I t depends on t h e c h i l d and i t depends on t h e p a r e n t s . What Has Been Most H e l p f u l ? ( i t e m 15) The l i s t o f who o r what has been most h e l p f u l t o p a r e n t s i n d i s c u s s i n g t h e i r c h i l d ' s i l l n e s s i s l o n g and v a r i e d b u t t h e t h r e e s o u r c e s most f r e q u e n t l y m e n t i o n e d were o t h e r p a r e n t s , h a v i n g i n f o r m a t i o n a b o u t t h e d i s e a s e and t h e f a m i l y ' s own p h i l o s o p h y o r s p i r i t u a l b e l i e f s . A l t h o u g h t a l k i n g t o o t h e r p a r e n t s on an i n d i v i d u a l b a s i s was c i t e d as a s i g n i f i c a n t s o u r c e o f h e l p , p a r e n t s seemed d i v i d e d on t h e u s e f u l n e s s o f p a r e n t g r o u p s . Some f e l t t h a t c o m p a r i s o n o f c h i l d r e n w o u l d o c c u r and t h i s c o u l d be u p s e t t i n g f o r t h o s e whose c h i l d r e n were n o t d o i n g so w e l l . O t h e r s f e l t t h a t g r o u p s were t o o d e p r e s s i n g b e c a u s e t h e r e was t o o much f o c u s on t h e i l l n e s s : I f e e l my o u t l o o k i s b e t t e r by n o t b e i n g i n v o l v e d ( i n a c y s t i c f i b r o s i s g roup) and i f D. knew I b e l o n g e d , i t wou l d be f o c u s i n g t o o much on h e r and she m i g h t t h i n k 'Why me, why n o t my 62 s i s t e r who has a blood ailment?' In a way i t would make i t seem more serious. By being involved you would put a l o t of serious thought into i t that you wouldn't otherwise. You just can't l i v e by dwelling on a thing. One parent who was active i n the c y s t i c f i b r o s i s organization t o l d of the problems they had keeping people i n the organization: We have big meetings, s i t down and discuss c y s t i c f i b r o s i s and people don't come back. You c a l l them and say 'Why don't you.;come back to the meetings?' and they say'we've got enough problems at home with c y s t i c f i b r o s i s - we're having troubles handling our own problems, we don';t want to go to a meeting to discuss problems. ' They don't want to get involved i n talking about c y s t i c f i b r o s i s . However, some parents f e l t that their contact with other parents through conferences, c y s t i c f i b r o s i s meetings or parent groups was h e l p f u l . One parent said just knowing he was not alone was a big help to him but also parents who have had years of experience with t h e i r children with c y s t i c f i b r o s i s could o f f e r the kind of support he needed at times. Another important source of help to parents was information about the disease. A number of parents said they knew nothing about the disease when the i r c h i l d was diagnosed and getting a l l the information they could became an obsession 63 w i t h t h e m . T h e b i g g e s t h e l p i s c o m p l e t e l y u n d e r -s t a n d i n g , h a v i n g a l l t h e a n s w e r s . W h e n I d o n ' t k n o w w h a t ' s g o i n g o n , t h a t ' s t h e o n l y t i m e t h a t I ' v e r e a l l y f e l t s c a r e d . T h e t h i n g I a p p r e c i a t e d t h e m o s t i s t h a t I w a s n e v e r g i v e n t h e r u n a r o u n d . W h e n I a s k e d I w a s a n s w e r e d a n d I t h i n k t h a t ' s i m p o r t a n t . O n e p a r e n t , o n l y , m e n t i o n e d t h e g r e a t s u p p o r t h e r e x t e n d e d f a m i l y h a d b e e n : I f w e h a d n ' t h a d t h a t k i n d o f s u p p o r t , I t h i n k w e w o u l d h a v e h a d a l o t m o r e d i f f i c u l t i e s . B u t a l o t o f t h e l i t t l e t h i n g s a r e t a k e n c a r e o f w h i c h t a k e s a l o t o f w o r r i e s a w a y s o t h e b i g o n e s a r e n ' t s o b a d t h e n . I n c o n t r a s t , a f e w p a r e n t s s a i d t h e i r f a m i l i e s w e r e n o t g o o d s u p p o r t s , o f t e n d e n y i n g t h e s e v e r i t y o f t h e d i s e a s e a n d s a y i n g t h e y d i d n o t w a n t t o t a l k a b o u t i t . P a r e n t s ' , p h i l o s o p h y o r s p i r i t u a l b e l i e f s o f t e n c e n t e r e d a r o u n d n o r m a l i z i n g t h e i r c h i l d w i t h c y s t i c f i b r o s i s a n d f o c u s i n g o n t h e p r e s e n t r a t h e r t h a n t h e f u t u r e . O n e p a r e n t b e l o n g e d t o " A l a n o n " a n d s h e a p p l i e d a l o t o f t h e p r i n c i p l e s o f t h a t o r g a n i z a t i o n t o l i v i n g w i t h c y s t i c f i b r o s i s : " L i v i n g o n e d a y a t a t i m e i s t h e i m p o r t a n t t h i n g b e c a u s e w i t h a d i s e a s e l i k e t h i s y o u c a n r e a l l y l e t y o u r i m a g i n a t i o n g e t a w a y f r o m y o u . " T h i s s a m e p a r e n t h a d p o l i o w h e n s h e w a s y o u n g e r a n d s h e f e l t 64 that also helped her to deal with c y s t i c f i b r o s i s . It's a handicap and we can a l l learn to l i v e with handicaps. We have to work around them and know our l i m i t s but we can s t i l l lead a normal l i f e . Many parents expressed the wish not to have the i r c h i l d singled out but to treat him normally: Cystic f i b r o s i s i s a long way down on the l i s t of who R. i s . We never forget but we t r e a t i t and l i v e as normally as we can. We do everything to keep her healthy that we can. What else can you do - whether i t ' s a c y s t i c f i b r o s i s c h i l d or a normal child? We try not to make a big issue out of i t , because you have to l i v e your l i f e and you can't have i t centered around something l i k e that. One parent exemplified the importance of attitude/ philosophy i n coping e f f e c t i v e l y with a chronic i l l n e s s . I don't f e e l longevity means happiness. I don't think perfect health means happi-ness. I think there i s an awful l o t more to i t than that so I never f e l t that th i s was a t e r r i b l e thing that had happened. The one thing I c e r t a i n l y f e l t was, 'Okay, my son has an i l l n e s s . There i s something I can do about i t . I wasn't helpless i n that s i t u a t i o n . I was able to do physio, I was able to give him support and to help him understand how to l i v e with his i l l n e s s . I can remember the f i r s t day I brought him home af t e r he was diagnosed. I had to do the physio and he was i n a mist tent. My 65 husband came home and a l l I had done that day was physio and the.mist tent. I said to him, 'I'm going to have to get faster at t h i s ' because the dishes were l e f t and the beds were unmade. You know, when you come home with a new baby, your f i r s t experience of trying to work out formulas and bottl e s , bathing him, and you're gingerly trying to hold him and you don't know what to do. Within 6 weeks i t ' s as i f you've been doing i t a l l your l i f e . It's exactly the same with c y s t i c f i b r o s i s . Of course there are times when i t ' s inconvenient to do physio etc. and you may wish you didn't have to do i t but don't we f e e l that way about dishes, washing the car, vacuuming. It's just part of l i f e . ' What Would Have Been Helpful? Five parents didn't know what would have been help-f u l . One of them seemed aT.little s c e p t i c a l about how help f u l health professionals could be: As for receiving i n s t r u c t i o n , (in discussing the i l l n e s s ) I think i t would have been h e l p f u l but i t ' s hard because there i s no happy medium. I think maybe i n some cases the medical profession try to be too much help, sort of a f r a i d they're missing a role somewhere. But again some parents l i k e a l o t of concern and help. I l i k e a l o t of privacy. Other parents went back to the time of the i r child's diagnosis as a point where they needed more support. Parents t e l l i n g t h e i r own stories would perhaps i l l u s t r a t e t h e i r needs the best: 66 When B. was born she had to have surgery and my wife and I were s i t t i n g i n this l i t t l e waiting room and the doctor walked toward us. We looked at him and both of us said at the same time 'she's dead,' because of the look on his face. He said "she survived the operation okay but we sus-pect c y s t i c f i b r o s i s . ' We didn't know what that was and he wouldn't explain i t to us. He said, 'We don't know for sure, we'll have to wait u n t i l she's 3 months of age before we can do the sweat test. We don't want to worry you u n t i l we are p o s i t i v e and then we'll explain i t to you.' No matter who I talked to I could not f i n d out anything. I didn't have a clue what i t was, not a clue. F i n a l l y we went to the c l i n i c and got some pamphlets and read them. Sure i t sounded bad because they are laying a bunch of heavy s t a t i s t i c s on you but at least we had an idea of what i t was. You know things bother me a l o t more when I don't understand them. This parent went on to say that i t would be help f u l i f there was a pamphlet that explains what c y s t i c f i b r o s i s i s from the parents' point of view - designed for parents by parents. He said the ones given him and his wife were just a bunch of s t a t i s t i c s . Some parents thought they were t o l d too much and others thought they were t o l d too l i t t l e : I remember them saying over and over again 'he mustn't catch colds or get the f l u . He shouldn't be around other children! For almost a year I kept him away from everyone and then thought 'I can't l i v e l i k e this.' I think a l o t of 67 i t i s to make you r e a l i z e but you can't cope with a l l that i n the beginning. If the doctors could be just a l i t t l e more s p e c i f i c when they are f i r s t explaining i t to you. I went home with some awfully big questions on my mind. He just said 'It's a disease of the lungs and pancreas I c a l l e d him the next day and said, 'I don't know what you are talking about.' Another parent was shocked at the manner of the doctor who informed her: The f i r s t question she asked me, point blank, was 'Are you very well o f f ? ' I had never heard such strange medical talk i n my l i f e and I said, 'Well, we're just ordinary people,' and she said, 'because D.'s treatment i s going to be very expensive and she i s very i l l and her l i f e w i l l be seriously ,' Ah, what she meant was shortened. That was the f i r s t I knew that c y s t i c f i b r o s i s was that serious. I don't think i t ' s normal for a doctor to t e l l someone news l i k e that over the phone, i n that way. Another mother said i t would have been h e l p f u l i f her son had been diagnosed sooner; he was 12 years o l d when diagnosed: T. coughed constantly and there wasn't a year that went by, from Grade 1 that I didn't have a teacher phone me or write to me and say 'would you please t e l l T. to stop coughing because he's disturbing the cl a s s . ' I took him to the doctor many times but the doctor would say 'there's nothing wrong with him. It's a nervous cough. 1 And so 68 we would be down his neck to quit and the c h i l d couldn't q u i t . And I'm sure that did a l o t of emotional damage. His school work, afte r he was diagnosed, came up just dramati-c a l l y . But he was fe e l i n g so much better because we knew what to do for him. Other parents talked of the r e l i e f of just-having t h e i r c h i l d diagnosed so the uncertainty of not knowing was removed. Some parents mentioned the school system as an area where support was needed. They f e l t that teachers were often not f a m i l i a r with c y s t i c f i b r o s i s and sometimes created undue anxiety for the c h i l d . One mother t o l d of the scene made by teachers when her daughter dropped on of her enzyme p i l l s on the f l o o r . They accused her of bringing dope to school. Some parents made a point of going to school and explaining t h e i r child's i l l n e s s to new teachers but others l e f t that up to the c h i l d himself. Some parents said that having someone to talk to would have been hel p f u l for them. These were parents who admitted to having a l o t of feelings about t h e i r child's i l l n e s s but no-one with whom they could share them. In summary, the findings reveal that parents do have d i f f i c u l t i e s i n communicating about c y s t i c f i b r o s i s within the 69 family and they are not receiving guidance from health pro-fessionals i n t h i s area. They c i t e t h e i r own philosophy/ r e l i g i o u s b e l i e f s , other parents and having information about c y s t i c f i b r o s i s as most he l p f u l i n helping them talk about the disease. They single out the time of diagnosis as being a point where they s p e c i f i c a l l y needed more support and guidance from health professionals. CHAPTER V DISCUSSION OF FINDINGS The findings w i l l be discussed i n r e l a t i o n to the conceptual framework and e x i s t i n g knowledge i n the f i e l d . The discussion w i l l be organized under the three main content areas covered i n the interview schedule. The f i r s t content area was concerned with, knowledge of c y s t i c f i b r o s i s - parents' knowledg and how they discussed the facts of the disease with th e i r c h i l dren. The second content area related to feelings - how parent dealt with, th e i r own and th e i r children's feelings about the i l l n e s s experience. The t h i r d content area concerned guidance received from health, professionals i n t a l k i n g about the i l l n e s s Parents' Knowledge (Item 1) The researcher asked parents to explain what c y s t i c f i b r o s i s i s to determine i f they had adequate knowledge to communicate e f f e c t i v e l y with th e i r children.about the disease. A general assessment was made of parents' knowledge based on the completeness and accuracy of t h e i r facts about c y s t i c f i b r o s i s . For example, i f parents gave a complete des-c r i p t i o n of the etiology, pathology, prognosis and rationale for treatment, they were considered to have a thorough, under-standing of the disease. If they could not accurately describe 70 71 any of the above factors they were considered to have a poor understanding. If they could describe some of the factors; for example, the pathology and treatment but not the etiology, they were considered to have a f a i r understanding. Most of the parents i n t h i s study had a good under-standing of c y s t i c f i b r o s i s , with some parents needing c l a r i -f i c a t i o n i n certa i n areas. Many parents mentioned that although they had been given detailed explanations of the i l l n e s s when th e i r c h i l d was diagnosed, they were unable to re t a i n much of what was said due to th e i r shock. This corresponds with reports In the l i t e r a t u r e that parents, at the time of diagno-s i s , r e t a i n only the information which helps them deal with the immediate s i t u a t i o n (Friedman, 1963; Burton, 197 5). Binger (1969) found that parents equated the time of i n i t i a l diagnosis of t h e i r c h i l d with, that of the ch i l d ' s death i n terms of c r i s i s . The majority of parents emphasized the importance of gaining information to help them cope. Some parents followed up on the i n i t i a l explanation they received by seeking out more information either from th e i r doctor, the c y s t i c f i b r o s i s foundation, other parents or the l i b r a r y . This compares with Hoffman & Futterman' s (.1971) findings that parents of a chron-i c a l l y i l l c h i l d often seek information as a means of getting some sense of mastery over the si t u a t i o n and to combat t h e i r sense of helplessness. I t also compares with findings reported by Hamburg & Adams (.1967) that parents go through stages i n coping with, chronic i l l n e s s . The i n i t i a l denial, while 72 decreasing the amount of Information they absorb, permits them to make a gradual t r a n s i t i o n to acceptance of the diagnosis. When they begin to face i t they seek more information about the i l l n e s s . However, i n t h i s study, some parents seemed reluctant to question t h e i r doctor. One woman who sought out more Infor-mation herself talked of those parents who did not: I have spent a l o t of time with other parents discussing the disease and what they should know. I found an awful, l o t of very uneduated parents who didn't know anything about the disease and were too scared to ask; the doctors were gods to them. I happen to be very open myself so I pushed to get the i n f o r -mation I wanted. These findings point to the importance of families having follow-up conferences aft e r the i n i t i a l diagnosis i s made so the understanding they have about t h e i r c h i l d ' s i l l n e s s i s accurate and complete. The investigator expected to f i n d a r e l a t i o n s h i p between parents' l e v e l of knowledge and t h e i r communication about the i l l n e s s but such, a relationship was not found. Obviously, the parent who had a poor understanding of the i l l n e s s did not communicate e f f e c t i v e l y with her children, but t h i s was also true of some parents who had a thorough under-standing of c y s t i c f i b r o s i s . Thus, while knowledge i s a necessary condition for communicating e f f e c t i v e l y , i t i s not a s u f f i c i e n t one. There must be other factors which play a 73 part i n determining how parents w i l l communicate with t h e i r children; probably an important one i s the parents* f e e l i n g s / perceptions about the i l l n e s s . Arnold (1978) emphasizes the importance of discussing with parents the personal significance of the knowledge they receive - what i t means to them to be parents of a c h i l d with, a chronic i l l n e s s . Other authors have validated the importance of checking out the family's percep-t i o n of the i l l n e s s experience (Leventhal and Hersh, 1975; Korsch, 1971; Kaplan, 1973). Another aspect of parents' knowledge which, needs fur-ther exploration i s whether the husband and wife receive t h e i r information together or separately. In t h i s study, only 2 of 11 husbands were present for the interview, and, i n most instances, the husband ra r e l y came to the c l i n i c . Regardless of the reasons for the husband's absence, t h i s has important implications for family communication. If the wife i s the only one i n contact with the health professionals, the family i s dependent upon her to convey information accurately to them. Friedman (.1963) found that women who had the r e s p o n s i b i l i t y of keeping t h e i r husbands informed recognized there was a l i m i t to how much, they could r e t a i n after talking with professionals. In addition to improving the accuracy of perceptions, Turk (1.964) emphasizes that i f parents see the physician together, t h i s could lead to more appreciation and consideration being given to one another. One woman i n the present study, referred to t h i s : 74 We s t i l l can't t a l k about i t (their) c h i l d ' s i l l n e s s ) that much. I would have l i k e d him to come.to the c l i n i c with me and I think he would have, except he couldn't get away. I thought i t might be good for him to see that there are others who have to work with, t h i s . Another advantage of parents seeing health profes-sionals together i s to reduce what Kaplan (1973) c a l l s discrep-ant coping. This occurs when parents take opposing positions on how to cope; for example, they disagree on whom to discuss the i l l n e s s with, and what to t e l l others about i t . Kaplan says this' can produce garbled and dishonest communication about the i l l n e s s . I t i s d i f f i c u l t to assess i f parents i n t h i s study displayed discrepant coping since, i n the majority of cases, only one parent was interviewed. However, i n the 2 families where both parents were interviewed, they did agree upon how to communicate about the i l l n e s s . This i s assuming, of course, that they were being t r u t h f u l and not merely wanting to present a "united front" for the interviewer. Although i n some cases i t i s very d i f f i c u l t for fathers to come to c l i n i c , i t was found i n families of children with cancer that the father often deliberately avoided much involve-ment with his family (Binger, 1969). While t h i s i s a coping mechanism on the father's part, states Binger, i t i s not a wise one since i t may have a negative e f f e c t on other family members. Binger emphasizes that these fathers need support to express t h e i r feelings and cope more e f f e c t i v e l y . 75 Discussion of Facts Citems 2-7) The l i t e r a t u r e often refers to the conspiracy of silence which, characterizes families of chron i c a l l y i l l c h i l -dren. While t h i s finding was not generally supported i n the present study there were areas c e r t a i n l y where i t applied; for example, the ch i l d ' s prognosis. T e l l i n g t h e i r c h i l d his prog-nosis was a major concern for most parents. They were i n a dilemma about whether or not to discuss i t with the children, while recognizing that sooner or l a t e r the children would fi n d out. Most parents f e l t that shielding t h e i r c h i l d as long as possible from the prognosis outweighed the possible negative reaction he might have when he found out he had been deceived. Binger (196 9) says the question i s not whether to talk about the diagnosis and prognosis but rather how to l e t the c h i l d know his concerns are understood and shared by his parents and that they are w i l l i n g to talk, about them with him. Van Eys (1979) states that "mental health of a c h i l d with cancer i s l i v i n g at ease with the r e a l i t y " (Preface). Although many parents did not s p e c i f i c a l l y explain c y s t i c f i b r o s i s to th e i r children, or give them many facts, they a l l thought they had t o l d them enough. Since t h i s study did not test the children's knowledge or perceptions i t i s d i f f i c u l t to determine the e f f e c t on the children of being given l i t t l e information. However, many authors emphasize the importance of the c h i l d having r e a l i s t i c knowledge about events which, a f f e c t him (Kliman, 1978; McCallum, 1975; Van Eys, 1979). It i s int e r e s t i n g to note that, while many parents mentioned that getting information about ;the I l l n e s s was an Important factor i n helping them cope, only 2 of 11 mothers emphasized the importance of giving t h e i r c h i l d Information to help him cope. It i s also i n t e r e s t i n g that parents stressed how the information they received needed to be repeated because they did not r e t a i n I t , yet 7 of 11 parents said they never repeated the explanations they gave t h e i r children. As mentioned previously, i t i s Important to check the parents' perceptions of the I l l n e s s experience. I t Is.even more important to check the children's perceptions since young children, e s p e c i a l l y , are susceptible to many misperceptlons (Wolff, 1969; Mattsson, 1972). Yet only one of 11 parents checked th e i r children's understanding of the I l l n e s s . One father who had explained c y s t i c f i b r o s i s i n great d e t a i l , Including the prognosis, and thought his children r e a l l y under-stood i t , found out d i f f e r e n t l y . When he asked them what they thought c y s t i c f i b r o s i s was, he found his daughter (.7 years) who had c y s t i c f i b r o s i s thought she would outgrow i t and his son (.9 years) had very l i t t l e understanding of the disease. Another instance In which checking out the ch i l d ' s perceptions Is important i s when the c h i l d i s r e s i s t i n g t r e a t -ment. One mother t e l l s of her daughter's resistance to taking her medications despite detailed explanations by the doctor of why she should: 77 Dr. Z. made diagrams for her; he cut down every B i t of food into fats and enzymes; how many enzymes she needed to cut down a piece of f a t and how many to cut down a piece of protein. He ripped up half a sketch pad with a l l these diagrams and i t didn't f i z z on her. She s t i l l won't take her p i l l s . Despite these detailed explanations no one checked out the adol-escent's perceptions of her i l l n e s s . Wolff (1969) says the most successful approach, to take with a c h i l d who i s r e s i s t i n g t r e a t -ment i s to avoid reasoning with the c h i l d about how important i t i s and focus instead on how he feels about being a diabetic; for example. Explore his views about how the i l l n e s s i s aff e c t i n g his family and what the implications are for his future. Such a process of exploration frequently uncovers surprising errors and misperceptions, the correction of which brings r e l i e f . Tropauer et a l . (1970) concluded from t h e i r study of children with c y s t i c f i b r o s i s that a r b i t r a r y handling of resistance to treatment tended to make the c h i l d even more resista n t since i t f a i l e d to deal adequately with the underlying anxiety. Again t h i s emphasizes that people often have d i f f e r e n t perceptions of a sit u a t i o n which do not get exposed unless one s p e c i f i c a l l y checks them out. Asking parents i f they had checked t h e i r children's understanding of the disease may well have been the most impor-tant question asked. No matter how much knowledge the parent has or how much information he gives his children, i f they do 78 not perceive i t c o r r e c t l y , the communication i s i n e f f e c t i v e . Another aspect of discussing the i l l n e s s with c h i l d -ren i s how parents explained 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 and c l i n i c v i s i t s to t h e i r children. These situations can provide opportunities for discussion of the i l l n e s s but were not u t i l i z e d as such i n t h i s study. Siblings who went to the c l i n i c with the i l l c h i l d and t h e i r mother usually sat q u i e t l y on the si d e l i n e s and were not Included i n the v i s i t . Although the i l l c h i l d and his s i b l i n g s were given an explanation about the h o s p i t a l i z a t i o n s when they occurred, t h i s seemed to be an area where s i b l i n g s could use extra attention, es p e c i a l l y i n checking out t h e i r perceptions about what i s going to happen to t h e i r brother or s i s t e r . In 2 of the families interviewed the s i b l i n g s were frighted that t h e i r brother or s i s t e r would not come home again. Children are naturally curious and i f they are not asking questions there i s usually a reason,(McCallum, 1975). In t h i s study, 2 parents reported that t h e i r children asked no questions and 2 more said t h e i r children rarely asked questions. Vernick and Karon (.1965) found i n a study of 150 children ranging i n age from 3 to 20 years that children waited for adults to anticipate and deal with t h e i r serious concerns -only then would they reveal t h e i r pre-existing worries. Thus i t would seem In families where the children are not asking questions that I t Is a i n d i c a t i o n that communication i s not open or e f f e c t i v e . 79 D i s c u s s i o n of F e e l i n g s (Items 8-12) Many authors emphasize the f a c t t h a t parents need an o p p o r t u n i t y to t a l k about t h e i r own f e e l i n g s b e f o r e they can al l o w t h e i r c h i l d r e n to t a l k about t h e i r s (Wolff, 1969; Grossman, 1972; Lerken and H a r s a k i s , 1973). In Burton's (1975) study parents who were a b l e to t a l k about t h e i r w o r r i e s con-c e r n i n g the i l l n e s s s t r e s s e d t h a t i t had a d e f i n i t e t h e r a p e u t i c v a l u e f o r them. Burton s t a t e s t h a t i n a l l cases where parents were e m o t i o n a l l y uncomfortable w i t h the d i s e a s e t h e i r a b i l i t y to communicate w i t h the c h i l d was di m i n i s h e d s i g n i f i c a n t l y . Over h a l f the parents i n t h i s study d i d not t a l k about t h e i r f e e l i n g s w i t h anyone. They o f t e n s t r e s s e d t h a t t h e i r own f a m i l i e s , i n c l u d i n g husbands, par e n t s , b r o t h e r s and s i s t e r s , as w e l l as f r i e n d s were not good res o u r c e s f o r them when i t came to s h a r i n g t h e i r f e e l i n g s . Thus, i n many i n s t a n c e s , they f e l t they had no one to t u r n t o . Only 2 parents admitted to s h a r i n g t h e i r .-feelings w i t h t h e i r c h i l d r e n , y e t most admitted to d i s p l a y i n g f e e l i n g s a t some p o i n t when the c h i l d r e n were present, e s p e c i a l l y around the time o f d i a g n o s i s . A l s o , some parents s a i d they d i s c u s s e d s e n s i t i v e i s s u e s when the c h i l d r e n were around w i t h -out i n c l u d i n g them. One mother s a i d t h a t d u r i n g her second pregnancy she and her husband o f t e n d i s c u s s e d i n t h e i r daughter's (7 years old) presence, whether or not they c o u l d handle another c h i l d with, c y s t i c f i b r o s i s . At the same time, the daughter "shut h e r s e l f o f f and r e f u s e d to take her p i l l s , s a y i n g , 'I'm 80 not sick.'" Another mother said she and her husband frequently argued i n front of t h e i r daughter (11 years old) about whose turn i t was to do her physio. Mother complained that t h i s c h i l d was very uncooperative about having her physio done. Kliman (1978) says even very young children are aware of and sensitive to s i g n i f i c a n t changes i n the attitudes and behaviors of those around them. When parents do not acknow-ledge these feelings to t h e i r children, they develop anxiety and, i n the case of the young c h i l d , misperceptions about the reasons. Kaplan (1965) stresses that children cannot and should not be shielded from a l l the family worries e s p e c i a l l y i f they are affected by them. Since a major developmental task i s to learn to face r e a l i t y and to tolerate stress, Kaplan says the family i s the best place to learn t h i s . Studies have shown that the opportunity for children to discuss t h e i r feelings and anxieties reduces the l i k l i h o o d of t h e i r showing emotional disturbances (Wolff, 1966; McCallum, 1975; Kliman, 1968). In the present study over half the parents did not talk to t h e i r children about t h e i r feelings. In a couple of instances parents expressed feelings of inadequacy over how to deal with t h e i r c h i l d ' s feelings when confronted with. them. One parent, whose son was 11 years old, was con-fronted with, "I hate you for giving me t h i s disease and I'm going to die next year." The parent said she did not deal with i t i n a way which helped her son and she i s t e r r i f i e d i t w i l l happen again. Klimen (1968) emphasizes the importance of the 81 c h i l d having an opportunity to release feelings frequently and i n small doses to prevent a b u i l d up and explosion of emotions which could be overwhelming to both him and his parents. The mother and son mentioned above are a good i l l u s t r a t i o n of t h i s . The feelings parents reported th e i r children expres-sing - anger, depression, fear and embarrassment, correlated with those found i n other studies (Binger, 1969; McCallum, 1970; Wolff, 1966). Different feelings seem to surface at d i f f e r e n t times; for example, embarrassment was common around 7-8 years when the c h i l d ' s peers took on a new significance for him and depression..of ten correlated with the c h i l d ' s be-ginning awareness of the permanence of death, around 11-12 years. This points to the fact that the chil d ' s i l l n e s s has special emotional, s o c i a l and I n t e l l e c t u a l meaning for him and his family i n each stage of his development (McCallum, 197 5) and the need for ongoing assessment i s c r i t i c a l . Although the l i t e r a t u r e findings suggest that s i b l i n g s of chronically i l l and handicapped children do have a number of negative feelings and resultant behavioral problems (Travis, 1976; Mattsson, 1972; Cain, 1964; Turk, 1964), over half the.... parents i n t h i s study reported no d i f f i c u l t i e s with t h e i r well children i n t h i s regard. Whether t h i s i s indeed the case, or whether as. some authors suggest (Klein, 1974; Craft, 1979), the parents underestimate the impact of the c h r o n i c a l l y i l l c h i l d on the well children, i s d i f f i c u l t to assess. Answers may have been provided i f the well children had also been Interviewed. 82 However, reasons given by parents for lack of s i b l i n g problems - age of s i b l i n g s , amount of time spent with, i l l c h i l d , size of the family, concur with, findings of other studies •(Burton, 1975; Travis, 1976; Jan et a l . , 1979). Of the families who did report that t h e i r well c h i l -dren had d i f f i c u l t i e s , most parents dealt with the problem By explaining to the children why they had to spend so much time with, t h e i r i l l c h i l d . None of the parents said they actually spent time talking to t h e i r well c h i l d about his feelings. Many authors emphasize the importance of parents allowing s i b -l ings to openly express t h e i r negative feelings toward t h e i r i l l brother or s i s t e r (Yamanato, 1972; Steinhauser, 1977; Jan et a l . , 1979). In the one study of s i b l i n g s ' perceptions of the experience of l i v i n g with a chro n i c a l l y i l l c h i l d , they a l l made reference to wanting someone to talk to about t h e i r f e e l -ings and having things explained to them ( l i e s , 1979). Although t h i s study was exploratory and had a small population, these findings do suggest that s i b l i n g s of chr o n i c a l l y i l l children., need more attention. Some authors: suggest that assessment of the family with a c h r o n i c a l l y i l l c h i l d should include an inquiry about how the well children are doing, what questions-they ask and what answers they receive, etc. This may help parents to focus more on t h e i r well children's needs (Craft, 1979; Mattsson, 1972). 8 3 Another factor I d e n t i f i e d i n the l i t e r a t u r e which contributes to s i b l i n g d i f f i c u l t i e s i s t h e i r having to assume too much r e s p o n s i b i l i t y for t h e i r i l l brother or s i s t e r (Burton, 1 9 7 5 ; Grossman, 1 9 7 2 ) . In t h i s study, 2 parents did seem to be expecting a great deal of th e i r well c h i l d . In one instance an 8h year old was responsible for seeing that his younger s i s t e r took her p i l l s and a 7v.year old was sometimes expected to give her s i s t e r physio. One would wonder how the s i b l i n g s would f e e l i f t h e i r brother or s i s t e r became very sick. Would they f e e l that they were to blame? Children, e s p e c i a l l y below the age of 8 , display animistic thinking and often believe they are the cause of events (Wolff, 1 9 6 9 ) . I t would seem that giv-ing them r e s p o n s i b i l i t y for t h e i r i l l s i b l i n g ' s care could create a great deal of unnecessary anxiety. Guidance from Health. Professionals (Items 1 3 - 1 5 ) Ten of 1 1 families i n t h i s study were not given speci-f i c guidance from health professionals i n communicating about the i l l n e s s . It i s i n t e r e s t i n g to note that, while some parents admitted to needing guidance, others did not. I t would appear that the majority of these parents do not recognize the impor-tance of t h e i r children having a thorough understanding of c y s t i c f i b r o s i s and the opportunity to talk about t h e i r feelings concerning the i l l n e s s . Thus, guidance needs to begin with helping parents r e a l i z e that a l l th e i r children w i l l have a greater p r o b a b i l i t y of coping e f f e c t i v e l y If they have a thor-ough understanding of the I l l n e s s and can talk openly about i t . 84 Most parents did perceive the need for more guidance at the time of t h e i r c h i l d ' s diagnosis. Generally, they wanted more information about c y s t i c f i b r o s i s but they wanted i t grad-u a l l y and not a l l i n the f i r s t Interview. Some parents also perceived the need for guidance i n helping t h e i r children deal with t h e i r f e e l i n g s . Although parents had received l i t t l e guidance from health, professionals they had found t h e i r own sources of help i n discussing the i l l n e s s ; mainly, other parents of children with c y s t i c f i b r o s i s and t h e i r own philosophy/religious b e l i e f s . This concurs with l i t e r a t u r e reports of sources of help to parents (Binger, 1969; Burton, 1975). Although most parents c i t e d other parents as being helpful i n t a l k i n g about the i l l n e s s , they were divided on the usefulness of parent groups as a means of accomplishing t h i s . Many preferred a one to one contact for the sharing of fee l i n g s . Since most parents voiced a need for Information perhaps parent education groups as opposed to groups for discussing feelings would meet the needs of a wider population. The parent educa-ti o n group could focus on such things as communication s k i l l s , information about the disease, budgeting finances, community resources, etc. The discussion of feelings, concerns, problems, etc. could be dealt with on an in d i v i d u a l basis. The need to normalize t h e i r c h i l d was an important aspect of parents' philosophy and one of which health profes-sionals should be aware. Often there i s too much focus on the 85 c h i l d ' s i l l n e s s and not enough, on the well aspects of the c h i l d . Some families i n t h i s study made reference to t h i s : I have to admit, I've found t h i s place (the c l i n i c ) depressing. There was always something hanging i n the a i r . You f e l t that they were thinking 'be thankful we have some time to work with, hopefully to f i n d a cure before she dies.' This was the f e e l i n g I got here -I wish they would look more l i k e i t wasn't quite so serious. Once you understand the i l l n e s s , i t may be serious but you've faced i t and what more can you do but stop worrying about i t . They put such a scare into you that you f e e l every day something i s going to happen. I was very up-t i g h t and i t took at l e a s t 2 years to undo that. I got to the point where I hated the c l i n i c . Van Eys (.1979) emphasizes that the home, school, hospital and c l i n i c must be such that the c h i l d can l i v e a f u l l l i f e and not primarily, experience a disease that must be treated, "There i s so much more to being a c h i l d than having cancer." (Preface v i ) . Perhaps the most important point that came from asking parents what would have been he l p f u l , i s that, while there are s i m i l a r i t i e s among people, each family i s d i f f e r e n t and what i s r i g h t for one i s not necessarily right for others. One woman's statement r e f l e c t s t h i s simply: "Some parents l i k e a l o t of concern and help, I l i k e a l o t of privacy." Embleton (1979) stresses the importance of t h i s concept i n her work with c h i l -dren with cancer and t h e i r f a m i l i e s . She says that, while i t i s good for some people to discuss feelings, for others i t 86 creates more stress and we need to be careful not to push what i s r i g h t for one as being r i g h t for a l l . For health professionals to be help f u l to fam i l i e s with chronically i l l children, they need to l i s t e n to the families i n order to discover what meaning the i l l n e s s exper-ience has for them. In t h i s way the uniqueness of each family's experience can be combined with the commonalities which, most families share, so that appropriate and timely services can be offered to every family. CHAPTER VI SUMMARY, CONCLUSIONS, IMPLICATIONS AND RECOMMENDATIONS FOR FURTHER STUDY This study was designed to e l i c i t information about communication patterns i n families with a chron i c a l l y i l l c h i l d and to i d e n t i f y what guidance parents had received from health professionals i n ta l k i n g about the i l l n e s s with t h e i r children. A convenience sample of 11 families of children with c y s t i c f i b r o s i s was used for the study. One or both parents were interviewed. The data were c o l l e c t e d using a semi-structured interview schedule with both open ended and closed questions. The interview covered 3 main content areas related to communi-cation; how the parents imparted information about c y s t i c f i b r o s i s to the i l l c h i l d and the well children, how they handled t h e i r own and the children's feelings and what guidance they had received from health professionals i n tal k i n g about the i l l n e s s . The interviews took approximately one hour and were conducted i n a private o f f i c e at the c y s t i c f i b r o s i s c l i n i c or i n the family home. In 9 of the interviews only the mother was present and i n the other 2 both parents were pre-sent. A l l interviews were taped and the tape recordings 87 were transcribed verbatim with the resultant data being summarized into categories. Descriptive s t a t i s t i c s were used to analyze the data. A l l 11 families interviewed described d i f f i c u l t i e s i n one or more areas of communicating about the i l l n e s s but only one parent out of 11 said she needed guidance i n how to talk about the i l l n e s s with her children. Most parents did not seem to recognize the importance of the i r children having a thorough understanding of c y s t i c f i b r o s i s or the impor-tance of t h e i r being able to talk openly about t h e i r feelings related to the i l l n e s s experience. Parents varied i n the amount of information they gave t h e i r children about the i l l n e s s , but the majority said they had not s p e c i f i c a l l y explained the facts; these had just evolved over the years through l i v i n g with i t . The one d i f f i c u l t y which a l l parents admitted to was not knowing how or what to t e l l t h e i r children about the prognosis. Only one parent had mentioned l i f e expectancy to his c h i l d . Most others reported they l i v e d i n fear of the i r c h i l d finding out. When asked i f they thought th e i r children were getting information about the i l l n e s s from sources other than them-selves, the majority of parents responded a f f i r m a t i v e l y , although they admitted to trying to screen the information 89 reaching t h e i r children. Most parents appeared unaware of age-appropriate explanations and said they gave a l l t h e i r children the same explanation, regardless of age. The majority of parents did not repeat explanations about the i l l n e s s and only 2 parents checked t h e i r children's understanding of c y s t i c f i b r o s i s . Parents, with one exception, said they were comfor-table t a l k i n g about the i l l n e s s ; but on further questioning, most admitted to being uncomfortable talking about c e r t a i n aspects of the i l l n e s s or at c e r t a i n times during the course of the i l l n e s s , such as the f i r s t few months after diagnosis or when the c h i l d was sick. Four parents said t h e i r children asked few or no questions about the i l l n e s s . The questions asked by children i n the other families seemed to f a l l into 2 main categories: the why questions of the 3 to 5 year olds and the more searching questions of the 11 to 13 year olds. Some parents mentioned that t h e i r children accepted i t much more matter of f a c t l y when younger but when they got older and became more aware, they had a more d i f f i c u l t time accepting i t . In the area of feelings, 6 of the 11-parents interviewed-said they did not talk '.about t h e i r own • .... feelings because they had no one to talk to. Some parents 90 mentioned that t h e i r own extended family and friends made i t clear that they did not want to talk to them about i t . The same number of parents did not talk to t h e i r i l l c h i l d about his feelings. Of the 5 parents who did talk to t h e i r i l l c h i l d about his feelings, the most frequently mentioned feelings were anger, depression, fear and embarrassment. The majority of parents said they thought t h e i r well children were not adversely affected by having a s i b l i n g with a chronic i l l n e s s . Of the 5 parents who did think t h e i r well children were affected, none of these talked to t h e i r children about t h e i r feelings on having a chronically i l l brother or s i s t e r . A minority of parents, 3 of the 11, expected t h e i r w ell children to take some r e s p o n s i b i l i t y i n caring for the i l l c h i l d . Of the 11 parents interviewed only one had been given guidance s p e c i f i c a l l y related to discussing c y s t i c f i b r o s i s with her children. None had received guidance i n age-appropriate explanations. When asked what had been most help f u l i n discussing the i l l n e s s , the parents most frequently mentioned other parents, the parents' own philosophy and the information they received about c y s t i c f i b r o s i s . When asked what would have been helpful, parents said; someone to talk to about t h e i r own feelings, teachers 91 being better educated about c y s t i c f i b r o s i s and more support at the time of t h e i r c h i l d ' s diagnosis. In conclusion, based on the findings of this study: 1. Most parents i n t h i s study do not perceive the impor-tance of t h e i r children having a thorough understanding of c y s t i c f i b r o s i s or the importance of t h e i r having opportunities to express t h e i r feelings about either having the disease or about l i v i n g with a s i b l i n g who has the disease. 2. Most parents i n t h i s study-do-not communicate e f f e c t i v e l y with t h e i r children about c y s t i c f i b r o s i s and i t s e f f e c t on the family. Areas where guidance i s needed are: giving children adequate and age-appropriate information; checking the children's understanding of the i l l n e s s p e r i o d i -c a l l y for any misperceptions and encouraging t h e i r children to express t h e i r feelings about l i v i n g with c y s t i c f i b r o s i s . 3. Parents need support at the time of diagnosis and i n the months following to help them reach an understand-ing of c y s t i c f i b r o s i s and i t s e f f e c t on t h e i r l i v e s and the l i v e s of t h e i r children. Implications Although the design of this study i s such that the findings can only be considered tentative, they strongly 92 suggest that parents do need guidance i n communicating about t h e i r child's chronic i l l n e s s within the family. This holds implications for nursing practice, education and research. Nursing Practice This study points to the importance of assessment i n caring for the chronically i l l c h i l d and his family, especially i n the area of the family's communication about the i l l n e s s . The time of i n i t i a l diagnosis was i d e n t i f i e d as a time when families began having problems communicating about the i l l n e s s . This was due to the i r not receiving enough information about the i l l n e s s or not being able to re t a i n a l l they did receive. While i t i s usually the physician's role to inform parents i n i t i a l l y of the i r child's i l l n e s s , nurses are often i n contact with the family on a more ongoing basis and are i n a pos i t i o n to assess how they are coping. There should be a follow-up of the i n i t i a l information session at regularly scheduled times so concerns and questions which the family has can be resolved. During these regularly scheduled conferences the families'perceptions of the experience of having a chronic-a l l y i l l c h i l d should be explored. Also, the support systems they have should be i d e n t i f i e d and discussed. What impact 93 has the diagnosis had on extended family members? While i t i s very important that both husband and wife attend these conferences, i t might also be important to include s i g n i -f i c a n t others i n the extended family who w i l l have an influence on family coping. In t h i s way, i t i s more l i k e l y that a l l family members receive the same message and have the same opportunities to explore the meaning the i l l n e s s has for them. This could be an important factor i n opening up communication within the family. Since t h i s study suggests that the meaning of the i l l n e s s changes as the c h i l d enters d i f f e r e n t stages of development, health professionals should provide ongoing assessment to i d e n t i f y any problems In the c h i l d 1 s and/or family's adjustment to the i l l n e s s . This assessment could be twice a year and/or at potential c r i s i s points along the way, such as when the c h i l d with c y s t i c f i b r o s i s or his si b l i n g s enters school, when the i l l c h i l d Is hospitalized, etc. Anticipatory teaching i s a very important aspect of working with, families of chron i c a l l y i l l c h ildren. I t can provide parents with the tools they need to communicate e f f e c t i v e l y with t h e i r children. For example, the nurse can Introduce the normal feelings that s i b l i n g s may have and suggest ways that parents might deal with them or she may explore with parents the kinds of questions the children may 94 a s k a n d h o w t h e y m i g h t a n s w e r t h e m . A l t h o u g h t h i s c a n b e d o n e o n a o n e t o o n e b a s i s w i t h p a r e n t s , a p a r e n t e d u c a t i o n g r o u p i n w h i c h t h e s e i s s u e s a r e r a i s e d a n d d i s c u s s e d c o u l d b e v e r y u s e f u l . T h e n u r s e c o u l d i n c o r p o r a t e t h e i n f o r m a t i o n s h e w a n t s t o s h a r e w i t h e x a m p l e s p a r e n t s b r i n g t o t h e g r o u p . T h i s c o u l d p r o v i d e a m e a n i n g f u l l e a r n i n g e x p e r i e n c e f o r a l l i n v o l v e d . I n a d d i t i o n t o a n t i c i p a t o r y t e a c h i n g , p a r e n t s n e e d a c h a n c e t o e x p r e s s t h e i r f e e l i n g s o n a n o n g o i n g b a s i s s i n c e t h e c h i l d ' s i l l n e s s p l a c e s h e a v y d e m a n d s o n t h e i r e n e r g y a n d t i m e . T h i s n e e d s t o b e r e c o g n i z e d a n d s u p p o r t g i v e n t o t h e i r e f f o r t s . S p e c i f i c t i m e s s h o u l d b e s e t f o r t h i s p u r p o s e s o t h e f o c u s i s t a k e n o f f t h e s i c k c h i l d a n d p u t o n t h e m . A p o s s i b l e t i m e f o r t h i s m a y b e w h e n t h e y b r i n g t h e i r c h i l d t o c l i n i c s i n c e t h e y u s u a l l y s p e n d a c o u p l e o f h o u r s s i t t i n g i n t h e w a i t i n g r o o m w h i l e t h e c h i l d h a s h i s l a b t e s t s , x - r a y s , e t c . T h e p r e s e n t s t u d y s h o w e d t h a t p a r e n t s f r e e l y e x p r e s s e d t h e i r f e e l i n g s w h e n t h e y w e r e g i v e n t h e o p p o r t u n i t y t o d o s o . N u r s i n g E d u c a t i o n S t u d e n t s i n a l l n u r s i n g p r o g r a m s s h o u l d r e c e i v e i n s t r u c t i o n i n k n o w l e d g e a n d s k i l l s r e l a t e d t o c h r o n i c i l l n e s s a n d i t s e f f e c t o n t h e e n t i r e f a m i l y . T h e c o n t e n t s h o u l d i n c l u d e s v a r i e t y o f c h r o n i c i l l n e s s e s a n d t h e i r e f f e c t o n 95 di f f e r e n t family members at d i f f e r e n t stages of t h e i r l i v e s . The commonalities as well as the differences should be explored. Emphasis should be placed on how these families cope - what constitutes e f f e c t i v e coping or i n e f f e c t i v e coping i n r e l a t i o n to roles, communication, inte r a c t i o n , etc. Discussion of the kinds of support these families need would be important. The content would be based on a variety of theories including communication, coping, development, family i n t e r a c t i o n and change theories. Students would be given opportunities to work closely with a family having a chronically i l l member over an extended period of time to develop s k i l l i n ongoing assess-ment and intervention. Since students would be working with a variety of families, a discussion group/seminar would be an e f f e c t i v e method of teaching since a l l could share t h e i r experiences and i d e n t i f y the s i m i l a r i t i e s and differences of each family's experiences. The preparation of a series of slide-tape shows on families of children with c y s t i c f i b r o s i s would be a good teaching t o o l not only for health professionals working with these families but also for the families themselves. It would include one on assessment of families at various stages of the child's development including i n d i v i d u a l family members' concerns about the i l l n e s s experience. This would bring out how the i l l n e s s poses d i f f e r e n t s o c i a l , emotional and i n t e l l e c t u a l problems at d i f f e r e n t stages of the child's development. There could be one on how the family talks about c y s t i c f i b r o s i s within the family and d i f f i c u l t i e s they have, using questions similar to the ones for this study. Another slide-tape could be prepared on anticipatory teach-ing including such things as normal s i b l i n g reactions and how to handle them, how to encourage children to share th e i r feelings, etc. In a l l of these tapes actual families of children with c y s t i c f i b r o s i s would be interviewed by the nurse. These tapes could be made available to the c y s t i c f i b r o s i s c l i n i c and parents could watch them during t h e i r waiting times at the c l i n i c . They could also be made a v a i l -able to continuing education departments within the hospital and used as part of the i r orientation program for s t a f f i n ped i a t r i c s . Nursing.Research This study should be repeated using a much larger sample to determine i f the results are applicable to a majority of families with a c h i l d with c y s t i c f i b r o s i s . I t would also be useful to include a test of the i l l c h i l d and his/her s i b l i n g s ' knowledge of the facts of the : illness.. such 9 7 as, what c y s t i c f i b r o s i s i s , what causes i t , how long w i l l they have i t , etc. This would validate or invalidate the parents' statements that the c h i l d understands his i l l n e s s . I t would also be useful to do the same study using d i f f e r e n t populations such as families of children with diabetes, epilepsy, cancer, hemophilia. Are there s i m i l a r i t i e s i n the way parents commun-icate about the i l l n e s s with t h e i r children? What are the differences? What factors account for these differences? What about families with handicapped children - are there communication problems i n r e l a t i o n to the handicap? Is there a difference i f the handicap i s congenital or acquired i n terms of communicating about i t ? Since many areas of potential d i f f i c u l t y i n commun-ic a t i n g were exposed i n t h i s study, the development of a r e l i a b l e and v a l i d t ool for assessing communication would be useful. Once the tool i s developed i t could be used on a variety of families with a chronically i l l c h i l d . The whole area of the e f f e c t of the chr o n i c a l l y i l l c h i l d on the s i b l i n g s ' needs to be explored. A study could be done i n which s i b l i n g s ' perceptions, concerns, feelings are explored using a semi-structured interview and/or drawings depending on the age of the c h i l d . Recommendations for:Further Study On the basis of the findings and implications of t h i s study, i t i s recommended that: 98 An assessment t o o l be developed and validated to assess communication patterns i n families with a chron-i c a l l y i l l c h i l d . This study be repeated using a larger sample and including a t e s t of the children's knowledge of the facts of the i l l n e s s . This study be repeated using d i f f e r e n t populations such as families of c h i l -dren with diabetes, epilepsy, cancer, hemophilia, physical handicap. Research be conducted on the s i b l i n g s of children with c y s t i c f i b r o s i s , exploring t h e i r perceptions, concerns and feelings. BIBLIOGRAPHY Anthony, E. and Koupernik, C. (eds.). The Child i n His Family. Vol I I . The Impact of Disease and Death. New York: John Wiley & Sons, 1973. Arnold, E. (ed.). Helping Parents Help Their Children. New York: Brunner/Mazel, 1978. Barsch, R. The Parent of the Handicapped Child. I l l i n o i s : Charles C. Thomas, 196 8. Berelson, B. and Steiner, G. Human Behavior - An Inventory of S c i e n t i f i c Findings. New York; Harcourt, Brace & World Inc., 1964. Binger, C. et a l . "Childhood Leukemia: Emotional Impact on Patient and Family." The New England Journal of  Medicine 280 (February, 1969):414-418. Brink, P. and Wood, M. Basic Steps i n Planning Nursing  Research. Mass: Duxbury Press, 1978. Burton, L. The Family L i f e of Sick Children - A Study of  Families Coping with Chronic Childhood Disease. London: Routledge & Kegan, 1975. Cain, A. et a l . Children's Disturbed Reactions to the Death of a S i b l i n g , American Journal Orthopsych. 34 (1964):741-748. Caplan, L. "Emotional Crises," i n The Encyclopaedic of Mental Health. Edited by A. Deutsch. New York: Franklin Watts, 19 63. Combs,. A. et a l . Helping Relationships. Boston: A l l y n and Bacon Inc., 1971 Craft, M. Help for the Family's Neglected Other Child. Maternal Child Nursing. 4 ( F a l l , 1979):297-300 Cytryn, L. et a l . "Psychological Adjustment of Children with Cystic F i b r o s i s , " i n The Child i n His Family. Edited by E. Anthony. New York: John Wiley & Sons, 1973. 10 0 Embleton, L. "Children, Cancer and Death: A Discussion of a Supportive Care System." Canada's Mental  Health 16 (April 1979.): 12-15. Fraiberg, S. The Magic Years. New York: Charles Serbner's Sons, 1959. Friedman, S. and Chodoff, L. "Behavioral Observations on Parents Anticipating the Death of a.Child." Pediatrics 32 (Spring 1963):610-625. F r i t z , C.E. "Disasters Compared i n Six American Communities." Human Organization 16 (1957):6-9. Futterman, E. and Hoffman, I. " C r i s i s and Adaptation i n the Families of F a t a l l y 111 Children" i n The Child  and His Family. Edited by E. Anthony. New York: John Wiley & Sons, 19 73. Grossman, F. Brothers and Si s t e r s of Retarded Children. An Exploratory Study. New York: John Wiley & Sons, 1973. Hamburg, D. and Adams, J . "A Perspective on Coping Behavior. Seeking and U t i l i z i n g Information i n Major Transitions." Archives of General Psychiatry. 17 (1967):277-283. Haney, W. Communication and Organizational Behavior. I l l i n o i s : Irwin-Dorsey Ltd. 1973. l i e s , J . "Children with Cancer: Healthy Siblings Perceptions of the Ill n e s s Experience." Cancer  Nursing, (October 1979): 371-377. Jan, J . et a l . V i s u a l Impairment i n Children & Adolescences. New York: Grune and Stratton, 19 77. Janis, I. Psychological Stress. New York: John Wiley & Sons, 1958. Johnson, W. Reaching Out. New Jersey: Prentice-Hall, Inc., 1972. Jourard, S. The Transparent Self. New York: Van Nostrand Reinhold Co., 19 71. 101 Kaplan, L. Foundations of Human Behavior. New York: Harper & Row, 19 65. Kaplan, D. et a l . "Family Mediation of Stress." Social  Work (July 1973):5-14. Kerlinger, F. Foundations of Behavioral Research. 2 ed. Toronto: Holt, Rinehart and Winston, 1973. Kiley, W. Coping With Severe I l l n e s s . Advances Psychosomatic Medicine. Vol. 8. New York: Karger, 1972. Klein, S. "Measuring the Outcome of the Impact of Chronic Childhood Il l n e s s on the Family." i n Chronic  Childhood I l l n e s s : Assessment of Outcome. 187-19.2. Edited by G. Grave and B. Pless. Maryland: DHEW Pub., 1974. Kliman, A. C r i s i s : Psychological F i r s t Aid for Recovery  and Growth. New York: Holt, Rinehart & Winston, 1978. Kliman, G. Psychological Emergencies of.Childhood. New York: Grune & Stratton, 1968. Kolin, I. et a l . Studies of School Aged Children with Meningomyelocale: Social and Emotional Adaptation. Journal of Pediatrics 78 (1972):103-108. Korsch, B. et a l . Long Term Follow Up on Kidney Transplant Patients and Their Families. P e d i a t r i c Research. 6 (Spring 1972):331-334. Korsch, B. et a l . Experiences with Children and Their Families During Extended Hemodialysis and Kidney Transplants. P e d i a t r i c C l i n i c s of North America. 18 (May 1971) -.625-631. Kubler-Ross, E. On Death and Dying. New York: MacMillan Co., 1969. Kulcyzycki, L. et a l . "Psychological Factors Relative to Management of Patients with Cystic F i b r o s i s . " 10 2 C l i n i c a l Proceedings of the Children's Hospital  Washington, D.C. 25 (1969):320-324. Lazarus, R. and Deese, J. and Osier, S. Review of Research on Effects of Psychological Stress Upon Performance. Research B u l l e t i n . Texas Human Resource Center (December 1951):51-58. Lazarus, R. et a l . "Personality and Psychological Stress." Journal of Personality 25 (1957):559-577. Lazarus, R. Psychological Stress and the Coping Process. New York: McGraw-Hill Book Co. 1966. Leiken, S. and Hassakis, P. "Psychological Study of Parents of Children with Cystic F i b r o s i s " i n The Child In His Family. Edited by E. Anthony. New York: John Wiley & Sons, 1973. Leventhal, B. and Hersh, S. "Modern Treatment of Childhood Leukemia: The Patient and His Family." Children  Today (Spring 1974):2-6. Lipowski, Z. "Psychosocial Aspects of Physical I l l n e s s . " i n Advances i n Psychosomatic Medicine. Vol. 8. New York: Karger and Basel, 1972. Livsey, C. "Physical I l l n e s s and Family Dynamics "...in Advances i n Psychosomatic Medicine. Vol. 8. New York: Karger and Basel, 1972. MacKinnon, J. "An Emperical Investigation of Dyadic Verbal Interaction i n the Chronic Pediatric Health Care Delivery System." Unpublished doctoral d i s s e r t a t i o n , U.B.C. 1980. Mattsson, A. "Long Term Physical I l l n e s s i n Childhood," Pediatrics 50 (September 1972):801-810. McCallum, A. & Gibson, L. "Family Adaptation to the Child with Cystic F i b r o s i s , " Jour, of Peds., (October 1970):571-578. MCCallum, A. Coping with Prolonged Health Impairment i n Your Child. Boston: L i t t l e , Brown & Co., 1975. 103 Meyerowitz, J. and Kaplan, H. "Familial Responses to Stress: The Case of Cystic F i b r o s i s . " Soc. S c i . & Med. 1 : (1967) :249-256. Murphy, L. et a l . The Widening World of Childhood: Paths  Toward Mastery. New York: Basic Books, 19 6 2 Olsen, E. "The Impact of Serious I l l n e s s on the Family System." Postgraduate Medicine. 47 (February 1970):169-174. Rausch de Traubenberg, N. "Psychological Aspects of C.H.W. i n the Child" i n The Child and His Family Edited by E. Anthony. New York: John Wiley & Sons, 1973. Rie, H. et a l . "Tutoring and V e n t i l a t i o n . " C l i n i c a l  Pediatrics 3 (Spring 1964) :581-584. Rutter, M. Helping Troubled Children. Toronto: Penguin Books, 1975. S a t i r , V. Conjoint Family Therapy. C a l i f o r n i a : Science & Behavior Books, Inc., 1967. Schneiders, A. "Communication i n Guidance and Counselling" i n Readings i n Human Relationships, Edited by H. Altman. Calgary: McCutchan, 19 72. Steinhauser, P. and Rae-Grant, A. (edsl) Psychological  Problems of the Child and his Family, Toronto: MacMillan Co., 1977. Thoyer, L. Communication and Communication Systems i n  Organization, Management and Interpersonal  Relations. Chicago: Irwin Dorsey Co. 1968. Travis, G. Chronic I l l n e s s i n Children: Its Impact on Child and Family. C a l i f o r n i a : Standford University Press, 1976. Tropauer, A. et a l . Psychological Aspects of the Care of Children with Cystic F i b r o s i s . Amer. J. Pis. Child 119 (1970):424-431 104 T u r k , J . Impact o f C y s t i c F i b r o s i s on F a m i l y F u n c t i o n i n g , P e d i a t r i c s 78 ( J u l y 1 964):67-71. Van E y s , J . (Ed.) The T r u l y C u r e d C h i l d . B a l t i m o r e : U n i v e r s i t y P a r k P r e s s , 1977. Van E y s , J . (Ed.) The N o r m a l l y S i c k C h i l d . B a l t i m o r e : U n i v e r s i t y P a r k P r e s s , 19 79. Vaughan, G.F. " C h i l d r e n I n H o s p i t a l " L a n c e t (1957): 1117-1122. V e r n i c k , D. and K a r o n , M. "Who's A f r a i d o f D e a t h on a Leu k e m i c Ward" Amer. J . P i s . C h i l d . 109 (1965): 393-397. W o l f f , S. C h i l d r e n Under S t r e s s . London: P e n g u i n P r e s s , 1969. W r i g h t s m a n , J . e t a l . A S c i e n t i f i c S t u d y o f Human B e h a v i o r . ( 5 t h e d i t i o n ) , C a l i f o r n i a : B r o o k s . C o l e Pub. Co. 1979. Yamanoto, K. The C h i l d and H i s Image. B o s t o n : Houghton M i f f l i n , 1972. APPENDIX A Letter of Consent Dear I am a registered nurse i n the masters program at the University of B r i t i s h Columbia. I am doing a study on how parents of children with c y s t i c f i b r o s i s t a l k about the disease within the family. The purpose of the study i s to obtain a better understanding of how nurses can be h e l p f u l to these families. I would l i k e to meet with you and your husband/wife to discuss how you talk about c y s t i c f i b r o s i s i n your family, and to f i n d out what support you have received from health professionals i n talking about the disease. This discussion would take approximately one hour at a time convenient to your family. The anonymity of a l l participants w i l l be maintained. I n i t i a l s rather than family names w i l l be used and although the interview w i l l be taped, the recording w i l l be available only to myself and my thesis committee. The tape w i l l be erased within three months of the interview. If you agree to p a r t i c i p a t e i n the study, you are s t i l l free to withdraw at any time without jeopardizing your child' s treatment. If you are w i l l i n g to p a r t i c i p a t e i n the study I w i l l make an appointment to v i s i t you at your home. If you have any questions about the study i n the near future or after the results are available please c a l l me at 266-6592. If you consent to take part i n t h i s study as desc-ribed, please sign this l e t t e r i n the space provided. Thank you. Sincerely, Connie Canam R.N., B.N. Name Date 105 APPENDIX B INTERVIEW SCHEDULE Demographic Data: I n i t i a l s Number of children and ages Age of c h i l d with c y s t i c f i b r o s i s Length of time since diagnosis Introduction Families who have a c h i l d with c y s t i c f i b r o s i s often have a d i f f i c u l t time explaining and discussing the i l l n e s s with th e i r children. Children may ask questions which are hard to answer and parents often avoid the question because they don't have the answer. I would l i k e to spend the next hour hearing what d i f f i c u l t i e s you may have experienced i n ta l k i n g about the i l l n e s s with your children, what has been h e l p f u l to you i n talking about the i l l n e s s and what guidance you have received from health professionals i n this area. Body of the Interview 1. Let's begin by having you b r i e f l y explain what c y s t i c f i b r o s i s i s . 106 107 (a) Have you explained i l l n e s s to him? To your other children? If not, why? When? What have you said? Who i n i t i a t e d the discussion? Did you give the same explanation to a l l of the children? What was your reason for this? Have you repeated the explanation? Do you f e e l you have t o l d them enough? If not, what else should be said? Do you mention the name of the diagnosis? If not, why not? If your c h i l d must be hosp i t a l i z e d , what do you t e l l him? What do you t e l l the other children? What questions do they ask? What do you t e l l them about going to the c l i n i c ? 3. Have you ever checked with your children about t h e i r understanding of the disease? For example, "John, i f one of your friends asked you what c y s t i c f i b r o s i s i s , what would you say?" 4. (a) Are you uncomfortable talking about the i l l n e s s ? (b) Can you pinpoint the reason for this? 108 (a) Have your children, including (name of c h i l d with c y s t i c f i b r o s i s ) ever asked questions about the disease? (b) What kinds of questions have they asked? (c) How often? (d) How have you answered these questions? (e) If they don't ask questions, do they comment on i t at a l l ? (f) If not, what do you think the reason i s for this? 6. (a) Do you encourage th e i r questions? (b) How? (c) If not, why? 7. (a) What kinds of things do you and your spouse talk about i n r e a l t i o n to your child' s i l l n e s s ? (b) Is there any one issue which dominates the conversation? (c) Do you discuss the i l l n e s s when any of the children are around? Parents and children often have feelings about l i v i n g with a c h i l d who has a chronic i l l n e s s ; such as sadness, f r u s t r a t i o n s , anger, etc. The i l l c h i l d , too, has many anxieties and feelings about his i l l n e s s . People frequently have d i f f i c u l t y expressing t h e i r feelings. They may f e e l they are the only ones who have f e l t a p a r t i c u l a r way and that 109 others wouldn't understand or accept t h e i r feelings. 8. (a) Do you talk about your feelings with anyone? If not, why? (b) When you are fee l i n g t i r e d and cranky, do you t e l l your children this? If not, why? 9. (a) Do you ever talk to about his feelings? (b) What do you say? (c) I f not, why? 10. (a) How do you think your well children f e e l when you must devote so much of your time to ? (b) Do you talk about this with them? (c) What do you say? (d) If not, why? 11. When your well children misbehave to get your attention, what do you say to them? 12. When your well children react i n angry, resentful ways toward , what do you say to them? Nurses and doctors may not always r e a l i z e the d i f f i -c u l t i e s of talking about the i l l n e s s with your children. 13. (a) Have you ever been given guidance from health professionals - doctors, nurses, etc. about discussing c y s t i c f i b r o s i s with 110 your children? (b) From whom? (c) What kind of guidance? (d) Was i t helpful? (e) In what way? 14. (a) Has anyone talked to you about explain-ing the disease i n d i f f e r e n t ways depending on the age of your child? (b) What were you told? 15. (a) Who or what has been most h e l p f u l i n helping you discuss your chil d ' s i l l -ness with him and your well children? (b) In what ways were they helpful? (c) What else would have been helpful? Termination of the Interview Summarize b r i e f l y what has been discussed. Express appreciation for t h e i r e f f o r t s . T e l l them they may have a copy of the o v e r a l l results i f they wish. 

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