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UBC Theses and Dissertations

Childhood cancer and family life : conceptualizing the perception of the sibling McLaughlin, Katherine E. 1982

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CHILDHOOD CANCER AND FAMILY LIFE: CONCEPTUALIZING THE PERCEPTION OF THE SIBLING by KATHERINE E. MCLAUGHLIN B.Sc.N., U n i v e r s i t y of Saskatchewan, 1959 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING i n THE FACULTY OF GRADUATE STUDIES (The School of Nursing) We accept t h i s t h e s i s as conforming to the r e q u i r e d standard THE UNIVERSITY OF BRITISH COLUMBIA October 1982 (c) K a t h e r i n e E. McLaughlin, 1982 I n p r e s e n t i n g t h i s t h e s i s i n p a r t i a l f u l f i l m e n t o f t h e 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 a t 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 t h a t 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 a n d 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 t h e h e a d o f my d e p a r t m e n t o r by h i s o r h e r r e p r e s e n t a t i v e s . I t 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 n o t 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 . D e p a r t m e n t 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 1956 Main Mall V a n c o u v e r , Canada V6T 1Y3 D a t e DE-6 (3/81) - i i -ABSTRACT CHILDHOOD CANCER AND FAMILY LIFE CONCEPTUALIZING THE PERCEPTION OF THE SIBLING This study was designed to i n v e s t i g a t e the s i b l i n g ' s view of l i v i n g i n a f a m i l y where another c h i l d was being t r e a t e d f o r cancer. S p e c i f i c a l l y , the purpose of the study was to c o n c e p t u a l i z e the s i b l i n g ' s p e r c e p t i o n of day to day l i v i n g when another c h i l d i n the f a m i l y i s being t r e a t e d f o r cancer. E i g h t c h i l d r e n belonging to two f a m i l i e s p a r t i c i p a t e d i n the study. Two c o n v e r s a t i o n s e s s i o n s were h e l d with each c h i l d , e i t h e r i n d i v i d u a l l y or i n a group, dur i n g which the i n t e r v i e w e r e l i c i c t e d d e s c r i p t i o n s of d a i l y l i f e . Using the constant comparative process a s s o c i a t e d with grounded the-ory, concepts i d e n t i f i e d as emerging from the data were the s p e c i a l s t a t u s of the i l l c h i l d , and a new no r m a l i t y . The process of r e d e f i n i n g n o r m a l i t y was i d e n t i f i e d as the cen-t r a l v a r i a b l e which accounted f o r the m a j o r i t y of the v a r i a -t i o n i n behavior. T h i s r e d e f i n i t i o n of no r m a l i t y appeared to make i t p o s s i b l e f o r s i b l i n g s to process problems i n such a way as to make l i f e v i a b l e (Glaser 1978, p. 57). The r e s u l t s of t h i s study support other r e s e a r c h which i n d i c a t e s t h a t the c h i l d ' s view of the world i s d i f f e r e n t than the a d u l t ' s . R e l a t i n g the f i n d i n g s of t h i s study to the l i t e r a t u r e has r e s u l t e d i n s p e c i f i c suggestions f o r nur s i n g r e s e a r c h f o r e l u c i d a t i n g the s i b l i n g ' s view. The i m p l i c a t i o n s f o r nu r s i n g p r a c t i c e are d i s c u s s e d w i t h i n the framework of Orem's general theory of n u r s i n g . - i i i -TABLE OF CONTENTS Page Abstract i i Acknowledgements v i CHAPTER I: INTRODUCTION 1 Introduction to Problem and Purpose . . . . . . . 1 Background to the Problem 4 Statement of Problem and Purpose 6 Definition of Terms 6 Significance of This Study for Nursing. . . . . 7 Limitations of the Study 8 Summary of the Introduction 8 CHAPTER II: REVIEW OF THE LITERATURE 9 Introduction 9 Siblings of Chronically 111 Children. . . . . . 10 Siblings 15 Methodology 18 Summary of the Literature Review 19 CHAPTER III: METHODOLOGY 21 Introduction 21 Obtaining the Sample 21 Crit e r i a for Sample Selection and Underlying Rationales 23 Making Contact with the Siblings. . . . . . . . 26 Ethical Considerations 27 A. The Parental Consent 28 B. Consent of the Siblings 29 C. The Parent as Gatekeeper 30 D. The Researcher's Responsibility to Consent Givers . . . . 30 The Interview as a Data Collection Tool in Qualitative Research with Children . . . . 31 Collecting the Data 32 The Circumstances of the Interviews . . . . . . 35 A. Interviews with the F i r s t Family. . . . 35 B. Interviews with the Second Family . . . 37 C. Why a Second Interview with the Same Population was Conducted . . . . 40 Analysis of the Data 41 Suinmary 43 - i v -CHAPTER TV: THE CONCEPTUALIZATION OF THE DATA 44 Introduction 44 The Nature and Sources of Information Available to the Siblings 45 A. The Seriousness of the Illness 45 B. Medication Taking 47 C. Diagnostic and Treatment Procedures . . 49 The Concepts and Their Indicators 52 A. Special Status for the 111 Child. . . . 52 1. Creation of Special Status for the 111 Child by the Parent . . . . 52 2. Conferring of Special Status on the 111 Child by the Siblings . . . 56 3. Siblings' Requirements for Outsiders to Confer Special Status on the 111 Child 59 4. Maintaining Special Status of the 111 Child 59 B. A New Normality 60 1. Changes i n Responsibility 61 2. Concerns About the 111 Child. . . . 63 3. Stress Associated with Illness and Treatment Variables . . . . . . 65 4. Mortality of the 111 Child 69 5. What i s Normal? . 70 6. Why Redefine Normal 72 The Relationship Between the Concepts and the Proposal of a Core Variable. . . 73 Summary 74 CHAPTER V: DISCUSSION 75 Introduction 75 Comparing Themes Identified i n the Literature to Themes Found i n this Study. . . . 75 A. Negative Feelings Such as Anger and Resentment 76 B. Isolation and Deprivation 77 C. Change 78 Comparing Concepts Identified in this Study to Similar concepts Discussed i n the Literature. 80 A. Special Status of the 111 Child . . . . 80 B. Redefining Normality 81 Relating the Methodology to the Literature. . . 83 Summary of the Discussion 87 CHAPTER VI: SUMMARY AND CONCLUSIONS . . . 88 Summary of This Study 88 Suggestions for Further Research 89 Implications for Practice 91 - V REFERENCES 93 APPENDICES 100 A. Parent's Consent Form 100 B. Children's Consent Form 102 C. Interview Schedule 103 ACKNOWLEDGEMENTS I am deeply grateful to several people without whose p a r t i c i p a t i o n and encouragement t h i s thesis could not have been completed. F i r s t of a l l I would l i k e to thank the children who shared t h e i r experiences with me and t h e i r parents for encouraging them to do so. I would l i k e to thank my committee members, Helen E l f e r t and V i r g i n i a Hayes-Morris for t h e i r guidance and contribution i n the research and writing of t h i s thesis. I appreciate the help of Dr. Mavis Teasdale who f a c i l i -tated the process of obtaining a study population. And f i n a l l y , I owe a special thanks to Joe, Kevin, and Megan who have been supportive and accommodating throughout my graduate studies. / -CHAPTER I: INTRODUCTION INTRODUCTION TO PROBLEM AND PURPOSE The change i n the survival rates of children affected with cancer has resulted i n the goal of a "cured" c h i l d . With the achievement of t h i s goal a p o s s i b i l i t y , the s o c i a l , psychological, and developmental requirements of the c h i l d assume the same degree of importance i n the treatment sche-dule as physical well-being. Hopefully, the results of treatment w i l l be a mentally healthy c h i l d functioning i n an age appropriate manner (van Eys 1977). In North America, society has conferred on the family much of the r e s p o n s i b i l i t y for helping the individual to meet his s o c i a l , psychological, and developmental require-ments. Where s i b l i n g s are a component of the family system, s i b l i n g relationships and interactions have been i d e n t i f i e d as important variables i n the development and s o c i a l i z a t i o n process (Schaveneveldt 1979). Nurses who view the family as a system indicate that an i l l n e s s i n one family member w i l l a f f e c t members of the system i n some way (Horton 1977). Understanding the impact of childhood cancer on the s i b l i n g s thus assumes increasing importance i n attempting to achieve the goal of a "cured" c h i l d . Coddington (1971) i d e n t i f i e d serious i l l n e s s of a brother or s i s t e r requiring h o s p i t a l i z a t i o n as a s t r e s s f u l l i f e experience for the s i b l i n g . Within a system's context, because t h i s kind of experience i s s t r e s s f u l , understanding the impact of childhood cancer on s i b l i n g s assumes a s i g n i -- 2 -f i c a n t i m p o r t a n c e i n a t t e m p t i n g t o a c h i e v e t h e g o a l o f a c u r e d c h i l d . How s i b l i n g s a r e a f f e c t e d by t h e p r e s e n c e o f c h i l d h o o d c a n c e r has been r e p o r t e d i n o n l y a l i m i t e d f a s h i o n t o d a t e , and t h e l i t e r a t u r e r e l a t i n g t o s i b l i n g s o f c h r o n i c a l l y i l l c h i l d r e n i n d i c a t e s a need f o r f u r t h e r s t u d y . B u r t o n (1975) i n t e r v i e w e d p a r e n t s o f c h r o n i c a l l y i l l c h i l d r e n who had w e l l s i b l i n g s l i v i n g a t home. The p a r e n t s r e l a t e d t h e i r v i e w s o f t h e e f f e c t o f t h i s s i t u a t i o n on t h e s i b l i n g s . They de-s c r i b e d f e e l i n g s o f j e a l o u s y o f and r e s e n t m e n t t o w a r d t h e i l l c h i l d f o r t h e e x t r a a t t e n t i o n b e i n g g i v e n t o h i m / h e r . C o m m u n i c a t i o n between w e l l s i b l i n g and p a r e n t a b o u t t h e i l l n e s s a p p e a r e d t o be l i m i t e d . C a i r n s , C l a r k , S m i t h and L a n s k y ( 1 9 7 9 ) ; L a v i g n e and Ryan ( 1 9 7 9 ) ; G a y t o n , F r i e d m a n , T a v o r m i n a and T u c k e r ( 1 9 7 7 ) ; and C a r a n d a n g (1979) have a l l s t u d i e d s i b l i n g ' s r e a c t i o n by a s s e s s i n g p a r t i c u l a r p s y c h o l o g i c a l v a r i a b l e s . G a y t o n and c o l l e a g u e s s u g g e s t t h a t t h e l o n g - t e r m e f f e c t on t h e s i b l i n g l i v i n g w i t h a c h i l d who i s c h r o n i c a l l y i l l i s r e l a t e d t o t h e s u c c e s s o f t h e c o p i n g s t r a t e g i e s o f t h e s i b l i n g . I n h e r e n t i n t h e p r o c e s s o f c o p i n g i s t h e i n d i v i d u a l ' s p e r c e p t i o n o f t h e p r o b l e m (Murphy 1974; M e c h a n i c 1974; L a z a r u s 1 9 75). The s i b l i n g ' s p e r c e p t i o n o f day t o day l i v i n g i n a f a m i l y when a n o t h e r c h i l d i s b e i n g t r e a t e d f o r c a n c e r w i l l i n f l u e n c e how ( s ) h e i s a f f e c t e d . The r e s e a r c h on s i b l i n g s o f p e d i a t r i c c a n c e r p a t i e n t s t o d a t e has c o n c e n -- 3 -t r a t e d on pa r e n t s ' r e p o r t s and assessment of s p e c i f i c psycho-l o g i c a l v a r i a b l e s . There appears t o c u r r e n t l y be a lack o f re s e a r c h r e p o r t e d which focuses on the s i b l i n g ' s p e r c e p t i o n . Developments i n c o g n i t i v e psychology have c o n t r i b u t e d t o c u r r e n t views of p e r c e p t i o n . Bruner (1973) e s t a b l i s h e d through h i s r e s e a r c h the importance of m o t i v a t i o n a l i n t e r -e s t s , purposes, and e x p e c t a t i o n s as determiners of per-c e p t i o n . He demonstrated t h a t there i s not a simple c o r r e -l a t i o n between e x t e r n a l events and a c t i o n s , but there i s some mechanism or f u n c t i o n of ch o i c e t h a t d i r e c t s behavior. P i a g e t (1969), i n one of h i s many d i s s e r t a t i o n s on percep-t i o n , suggests t h a t i t i s determined by a c o n s t r u c t i v e p r o b l e m - s o l v i n g process. The i n d i v i d u a l i s c o n s t a n t l y accumulating i n f o r m a t i o n t o b u i l d i n t o the p e r c e p t i o n , thus, there i s a developmental aspect a l s o . Because the scope of the present study was l i m i t e d , i t was not p o s s i b l e t o ex-p l o r e a l l of these aspects of p e r c e p t i o n i n depth. However, the r e p o r t of the f i n d i n g s of t h i s study i s an attempt t o c o n t r i b u t e a d d i t i o n a l data about s i b l i n g ' s p e r c e p t i o n of the s p e c i f i e d i l l n e s s experience. D i e r s (1979) says t h a t when the r e i s a lack of i n f o r -mation about a phenomenon, or when a r e s e a r c h e r wishes t o take a new look a t a s i t u a t i o n , a f a c t o r - s e a r c h i n g study i s a p p r o p r i a t e . G l a s e r and Strauss (1967) have d e s c r i b e d a method of g a t h e r i n g and a n a l y z i n g data i n a f a c t o r - s e a r c h i n g study whereby i t i s p o s s i b l e t o c o n c e p t u a l i z e r a t h e r than d e s c r i b e a s i t u a t i o n . The method i n v o l v e s c o n s t a n t l y com-- 4 -p a r i n g , c o d i n g , and a n a l y z i n g d a t a . T h i s method a l l o w s t h e r e s e a r c h e r t o g e n e r a t e t h e o r y o r t o " d i s c o v e r " t h e o r y . I t i s n o t a method f o r t e s t i n g o f t h e o r y b u t i t i s more s p e c i -f i c t h a n d e s c r i p t i o n o f a s i t u a t i o n . T h i s s t u d y u t i l i z e d t h i s method t o c o n c e p t u a l i z e t h e s i b l i n g ' s p e r c e p t i o n o f day t o day l i v i n g when a n o t h e r c h i l d i n t h e f a m i l y was b e i n g t r e a t e d f o r c a n c e r . BACKGROUND TO THE PROBLEM I n a r e v i e w o f t h e l i t e r a t u r e r e l a t e d t o t h e r o l e o f n u r s i n g i n p e d i a t r i c o n c o l o g y , t h i s r e s e a r c h e r f o u n d a s i g n i f i c a n t number o f s t u d i e s and a r t i c l e s r e l a t e d t o t h e r e s p o n s e o f t h e f a m i l y t o c h i l d h o o d c a n c e r ( B i n g e r , A l b i n , F e u r s t e i n , K u s h n e r , Z'oger, and M i k k e l s e n 1969; L a s c a r i and S t e h b e n s 1973; P e a r s e 1977; E m b l e t o n 1979). However, on c l o s e r e x a m i n a t i o n t h e s u b j e c t s c o n s t i t u t i n g t h e " f a m i l y " were t h e p a r e n t s and i l l c h i l d w i t h t h e r e s p o n s e s o f s i b -l i n g s b e i n g p r e s e n t e d n o t by t h e m s e l v e s b u t by t h e p a r e n t s . I n the. more r e c e n t l i t e r a t u r e t h e r e a r e r e p o r t s o f p s y c h o l o -g i c a l t e s t i n g o f s i b l i n g s w i t h t h e s t u d y v a r i a b l e s b e i n g d e c i d e d by t h e i n v e s t i g a t o r b a s e d on h i s o r h e r p e r c e p t i o n o f t h e e f f e c t o f c h r o n i c i l l n e s s on t h e s i b l i n g s ( C a i r n s e t a l 1979; C a r a n d a n g 1977; G a y t o n e t a l 1977; L a v i g n e t a l 1979) . I n e x i s t i n g l i t e r a t u r e t h a t d e s c r i b e s , b u t a g a i n n o t by t h e s i b l i n g s t h e m s e l v e s , w o r k i n g w i t h f a m i l i e s o f p e d i a t r i c c a n c e r p a t i e n t s , t h e r e a p p e a r s t o have b e e n l i t t l e d i r e c t - 5 -c o n t a c t between h e a l t h p r o f e s s i o n a l s and the s i b l i n g s other than on a s o c i a l b a s i s . Parents o c c a s i o n a l l y expressed concern r e g a r d i n g the s i b l i n g s and these would be d i s c u s s e d , with i n t e r v e n t i o n s suggested. The parent thus seems to be very much the i n t e r m e d i a r y between s i b l i n g s and h e a l t h workers. Lavigne (1980) found i n a survey to which twenty p e d i a -t r i c cancer c e n t e r s responded t h a t s i x r e p o r t e d i n d i v i d u a l therapy was a v a i l a b l e f o r s i b l i n g s , f i v e r e p o r t e d s i b l i n g s were r a r e l y seen, and nine r e p o r t e d i n d i v i d u a l therapy was a v a i l a b l e as needed. Lavigne posed the q u e s t i o n "Does our c u r r e n t l e v e l of knowledge i n d i c a t e t h a t more r i g o r o u s i n t e r v e n t i o n i s r o u t i n e l y needed f o r s i b l i n g s of c h i l d h o o d cancer p a t i e n t s ? " (p. 46). T h i s i n v e s t i g a t o r ' s review of the l i t e r a t u r e suggested t h a t there i s not enough informa-t i o n a v a i l a b l e at present to answer t h a t q u e s t i o n . The c h i l d ' s r e a c t i o n t o , and i n t e r a c t i o n i n , a s i t u a -t i o n i s r e l a t e d t o h i s / h e r p e r c e p t i o n of t h a t s i t u a t i o n and i t s requirements. W i t h i n a developmental paradigm, the c h i l d ' s view of the world i s not the same as the a d u l t ' s (Lerner 1976). The c h i l d ' s view must be s t u d i e d i n depth t o determine i f there i s a need f o r more s t r u c t u r e d and sytem-a t i c i n t e r v e n t i o n with s i b l i n g s of c h i l d h o o d cancer pa-t i e n t s . T h i s study was designed t o explore one way of studying the c h i l d ' s view. - 6 -STATEMENT OF PROBLEM AND PURPOSE The p u r p o s e o f t h i s s t u d y was t o c o n c e p t u a l i z e t h e s i b l i n g ' s p e r c e p t i o n o f day t o day l i v i n g when a n o t h e r c h i l d i n t h e f a m i l y i s b e i n g t r e a t e d f o r c a n c e r . The s p e c i f i c q u e s t i o n s w h i c h t h e r e p o r t o f t h i s s t u d y w i l l a d d r e s s a r e : 1. What c o n c e p t s w h i c h r e l a t e t o t h e s i b l i n g s p e r c e p -t i o n c a n be d e r i v e d f r o m t h e s i b l i n g ' s d e s c r i p t i o n o f t h e e x p e r i e n c e o f day t o day l i v i n g when a c h i l d i n t h e f a m i l y i s b e i n g t r e a t e d f o r c a n c e r ? 2. What i s t h e r e l a t i o n s h i p between t h e s e c o n c e p t s ? DEFINITION OF TERMS The t e r m s f o l l o w i n g a r e d e f i n e d t o a s s i s t i n c l a r i f y i n g t h e p u r p o s e o f t h e s t u d y and t h e p r o b l e m s t a t e m e n t . B e i n g t r e a t e d f o r c a n c e r : The c h i l d w i t h c a n c e r i s c u r r e n t -l y r e c e i v i n g r a d i a t i o n t h e r a p y , t a k i n g c h e m o t h e r a p e u t i c m e d i c a t i o n , u n d e r g o i n g o r s c h e d u l e d t o u n d e r g o a s u r g i -c a l p r o c e d u r e . C o n c e p t : " A b s t r a c t i o n s g r o u n d e d i n t h e d a t a , b u t s e t o f f w i t h s p e c i f i c d e f i n i t i o n s " ( D i e r s 1979, p. 101). C o n c e p t u a l i z e : To i d e n t i f y c o n c e p t s and t h e i r r e l a t i o n -s h i p s . P e r c e p t i o n : The p r o c e s s by w h i c h we o b t a i n , t r a n s f o r m , o r g a n i z e , and s t r u c t u r e i n f o r m a t i o n a r i s i n g f r o m t h e w o r l d i n s e n s e d a t a o r memory, and r e s p o n d t o t h a t d a t a i n a s e l e c t i v e and d i s c r i m i n a t i v e manner ( a d a p t e d f r o m G i b s o n 1969) . - 7 -SIGNIFICANCE OF THIS STUDY FOR NURSING Orem (1980) has stated i n her general theory for nurs-ing that a need for nursing exists when an individual i s unable to meet his requirements for s e l f - c a r e . Underlying t h i s i s the premise that people have specialized capabil-i t i e s conditioned by age, experience, and culture, which enable them to take self-care actions. From time to time, the requirements for self-care may exceed the c a p a b i l i t y of the i n d i v i d u a l . If the increased demand i s health related, a nursing system may be required. One of the functions of the nursing system i s the c a l c u l a t i o n of the therapeutic self-care demand. Conceptualization of the s i b l i n g ' s per-ception of day to day l i v i n g when a c h i l d i n the family i s being treated for cancer w i l l give guidance to the nursing profession i n the c a l c u l a t i o n of the therapeutic self-care demand for that population. It would seem to be possible, using the constant comparative analysis method of Glaser and Strauss (1967), to generate theory which can be applied i n c a l c u l a t i n g the therapeutic self-care demand for children whenever the reason for the increase i n demand i s substan-t i v e l y similar to those s i b l i n g s which form the sample i n the study. Family theorists indicate that an i l l n e s s i n one family member w i l l a f f e c t a l l members of the family i n some way (Horton 1977). To understand why l i v i n g with a c h i l d being treated for cancer i s disturbing for some s i b l i n g s and not for others, i t i s necessary to know more about how the - 8 -s i b l i n g views the si t u a t i o n . This information i s essential for designing programs of anticipatory guidance for families of children with cancer. LIMITATIONS OF THE STUDY Limitations of the study arose from the limited number of experiences that were be sampled within the scope of t h i s study. Limitations also arose from data c o l l e c t i o n being limited to the interview amd consequently to remembered experience rather than current experience. This issue i s addressed i n the discussion. In the two families which composed the study sample, the i l l c h i l d was the youngest c h i l d . If the position of the i l l c h i l d i n the s i b l i n g order i s a s i g n i f i c a n t factor in the s i b l i n g ' s perception of family experiences, t h i s could be a l i m i t a t i o n . SUMMARY OF THE INTRODUCTION It appeared that a study to conceptualize the s i b l i n g ' s perception of day to day l i v i n g when a c h i l d i n the family i s being treated for cancer would be timely and that such a study could contribute to nursing research and to nursing practice. - 9 -CHAPTER I I : REVIEW OF THE LITERATURE INTRODUCTION The purpose of the l i t e r a t u r e review i n t h i s study i s twofold. The review of the l i t e r a t u r e demonstrates the need f o r a study about day to day l i v i n g when another c h i l d i n the f a m i l y i s being t r e a t e d f o r cancer, undertaken from the p o i n t of view of the s i b l i n g ' s p e r c e p t i o n . I t a l s o i d e n t i -f i e s r e s e a r c h and t h e o r e t i c a l o r i e n t a t i o n s which a i d i n c o n c e p t u a l i z i n g t h a t p e r c e p t i o n . H e a l t h p r o f e s s i o n a l s speak of cancer as being a c h r o n i c although l i f e - t h r e a t e n i n g i l l n e s s with acute e x a c e r b a t i o n s . The l i t e r a t u r e r e f e r r i n g s p e c i f i c a l l y to s i b l i n g s of c h i l -dren with cancer i s very l i m i t e d . T h e r e f o r e , a p o r t i o n o f the l i t e r a t u r e r e f e r r i n g t o s i b l i n g s of c h r o n i c a l l y i l l c h i l d r e n has been i n c l u d e d i n t h i s l i t e r a t u r e review on the assumption t h a t i t w i l l help t o c l a r i f y the impact on the h e a l t h y s i b l i n g s , of long-term i l l n e s s of a c h i l d i n the f a m i l y . T h i s l i t e r a t u r e review excludes those s t u d i e s of s i b l i n g s done f o l l o w i n g the death of the i l l c h i l d . Death i t s e l f i n t r o d u c e s a new set of experiences, emotions, and behaviors t h a t a l t e r the s i b l i n g ' s p e r c e p t i o n of the i l l n e s s e x p erience. L i t e r a t u r e i s reviewed which c o u l d be h e l p f u l r e l a t i v e to c o n s t r u c t i n g a theory of s i b l i n g b e havior. F i n a l l y , l i t e r a t u r e i s reviewed which g i v e s d i r e c t i o n t o the methodology t o be employed f o r data c o l l e c t i o n and a n a l y s i s . - 10 -SIBLINGS OF CHRONICALLY I L L CHILDREN The s t u d y o f s p e c i f i c p s y c h o l o g i c a l v a r i a b l e s h a s b e e n one way o f g a i n i n g i n f o r m a t i o n a b o u t t h e e f f e c t o f c h r o n i c c h i l d h o o d i l l n e s s on s i b l i n g s o f t h e i l l c h i l d . As p a r t o f a l a r g e r i n v e s t i g a t i o n o f t h e p s y c h o s o c i a l a s p e c t s o f c y s t i c f i b r o s i s , d a t a were c o l l e c t e d c o m p a r i n g 23 c h i l d r e n w i t h c y s t i c f i b r o s i s and 26 s i b l i n g s between t h e ages o f 5 and 13 u s i n g t h e P i e r s H a r r i s S e l f - C o n c e p t S c a l e , M i s s o u r i C h i l -d r e n ' s P i c t u r e S e r i e s , and t h e H o l t z m a n I n k b l o t T e s t (Gay-t o n , F r i e d m a n , T a v o r m i n a & T u c k e r 1977). The t o t a l s e l f -c o n c e p t s c o r e f o r s i b l i n g s on t h e P i e r s H a r r i s S c a l e was h i g h e r t h a n t h a t r e p o r t e d b y P i e r s f o r n o r m a l c h i l d r e n . The r e s u l t s i n d i c a t e d no s i g n i f i c a n t d i f f e r e n c e s between t h e means o f t h e p a t i e n t s ' and s i b l i n g s ' s c o r e s on t h e f i r s t two t e s t s , and p e r s o n a l i t y f u n c t i o n i n g f o r b o t h g r o u p s w i t h i n n o rmal l i m i t s on t h e i n k b l o t t e s t . T h i s s t u d y does n o t s u p p o r t t h e r e s e a r c h e r s ' h y p o t h e s e s o f an i n c r e a s e d i n c i -d e nce o f e m o t i o n a l d i s t u r b a n c e i n c h i l d r e n w i t h c y s t i c f i b r o s i s n o r does i t s u p p o r t a n e g a t i v e p s y c h o l o g i c a l i m p a c t on s i b l i n g d e v e l o p m e n t . I n t h e d i s c u s s i o n o f t h e i r f i n d i n g s t h e a u t h o r s do n o t n e g a t e t h e c o n c e p t o f c h r o n i c i l l n e s s as a s t r e s s o r b u t s u g g e s t t h a t t h e u t i l i z a t i o n o f c o p i n g d e -v i c e s may r e s u l t i n h e a l t h y a d a p t a t i o n s f o r t h e i l l c h i l d and members o f h i s f a m i l y . The a u t h o r s u g g e s t s i t i s p o s -s i b l e t h a t t h e i n s t r u m e n t s u s e d were n o t a d e q u a t e t o measure t h e n e g a t i v e i m p a c t o f t h e c h r o n i c i l l n e s s . - 11 -A s e c o n d s t u d y u s i n g t h e P i e r s H a r r i s S c a l e a l o n g w i t h t h e B ene-Anthony F a m i l y R e l a t i o n s T e s t and .the T h e m a t i c A p p e r c e p t i o n T e s t was c o n d u c t e d i n w h i c h c h i l d r e n d i a g n o s e d as h a v i n g c a n c e r were compared w i t h t h e i r s i b l i n g s ( C a i r n s , C l a r k , S m i t h and L a n s k y 1979). F o r t y - s e v e n p a r e n t s and 55 s i b l i n g s c o m p r i s i n g 27 p a t i e n t - s i b l i n g p a i r s between 6 and 16 y e a r s o f age were i n v o l v e d . No s i g n i f i c a n t d i f f e r e n c e s between p a t i e n t s and s i b l i n g s were f o u n d on t h e P i e r s H a r r i s S c a l e . D i f f e r e n c e s were f o u n d i n 14 p a t i e n t - s i b l i n g p a i r s on t h e B e n e - A n t h o n y F a m i l y R e l a t i o n s T e s t . S i b l i n g s v i e w e d t h e mother as o v e r - p r o t e c t i v e and o v e r - i n d u l g e n t . The a u t h o r s s u g g e s t t h a t t h i s f i n d i n g may be v a l i d o n l y d u r i n g t h e t i m e t h e p a t i e n t i s h o s p i t a l i z e d . The f i n d i n g s a l s o s u g g e s t e d male p a t i e n t s and f e m a l e s i b l i n g s d i d n o t f e e l o t h e r f a m i l y members had good f e e l i n g s t o w a r d them. S e v e n -t e e n p a t i e n t s and 20 s i b l i n g s t o o k t h e T h e m a t i c A p p e r c e p t i o n T e s t . T h e r e were enough d i f f e r e n c e s between t h e two g r o u p s t h a t r e s p o n d e n t s c o u l d be i d e n t i f i e d on t h e b a s i s o f t h e TAT s t o r y . S i b l i n g s a p p e a r e d t o have a s i g n i f i c a n t d e g r e e o f a n x i e t y , f e a r f o r t h e i r own h e a l t h , s o c i a l i s o l a t i o n , as w e l l as s h a r i n g w i t h t h e i l l c h i l d a n e g a t i v e body image. I n t h e two p r e c e e d i n g s t u d i e s , t h e t e s t i n g was c a r r i e d o u t i n a c l i n i c o r h o s p i t a l s e t t i n g . C a i r n s e t a l s u g g e s t s t h i s c o u l d s e r v e t o i n c r e a s e t h e a n x i e t y o f t h e s i b l i n g s r e l a t i v e t o t h e i r u l t i m a t e m o r t a l i t y and s u s c e p t i b i l i t y t o i l l n e s s . - 12 -C a r a n d a n g (1977) i n v e s t i g a t e d t h e e f f e c t s o f t h e s t r e s s o f s i b l i n g i l l n e s s on c o g n i t i v e f o r m u l a t i o n s a b o u t i l l n e s s by a n o n - i l l s i b l i n g . Her sample c o n s i s t e d o f 72 c h i l d r e n aged 6% t o 15 y e a r s and t h e i r m o t h e r s . They were d i v i d e d i n t o two g r o u p s o f 36 c h i l d r e n e a c h , o n e - h a l f had h e a l t h y s i b l i n g s . The two g r o u p s were matched i n t e r m s o f s e x , P i a g e t i a n c o g n i t i v e l e v e l , g r a d e l e v e l and s o c i o - e c o n o m i c s t a t u s . A l l s u b j e c t s were i n t e r v i e w e d i n t h e i r own homes w i t h t h e t a s k o f t h e i n t e r v i e w b e i n g t o measure t h e l e v e l o f i l l n e s s u n d e r s t a n d i n g , s t r e s s , and f r e q u e n c y o f d i s c u s s i o n o f i l l n e s s . The a u t h o r f o u n d t h a t t h e more w o r r y t h e mother e x p r e s s e d , t h e l e s s s o p h i s t i c a t i o n a c h i l d showed i n i l l n e s s c o n c e p t u a l i z a t i o n and u n d e r s t a n d i n g . A l s o , t h e l e s s f r e -q u e n t l y t h e f a m i l y d i s c u s s e d i l l n e s s , t h e more w o r r y t h e c h i l d e x p r e s s e d . I n an a t t e m p t t o g e t an o v e r a l l v i e w o f t h e e f f e c t o f l o n g - t e r m i l l n e s s on t h e h e a l t h y s i b l i n g s , T a y l o r (1980) i n t e r v i e w e d 25 s i b l i n g s o f c h i l d r e n w i t h asthma, c o n g e n i t a l h e a r t d i s e a s e , and c y s t i c f i b r o s i s r a n g i n g i n age f r o m 7 t o 12 y e a r s e l i c i t i n g d e s c r i p t i o n s o f t h e e f f e c t s o f l o n g t e r m c h i l d h o o d i l l n e s s f r o m them. F i v e a s p e c t s o f t h e i l l c h i l d t h a t a f f e c t e d t h e w e l l - s i b l i n g were i d e n t i f i e d . T h e s e i n c l u d e d p l a y and s o c i a l i z a t i o n , m e d i c a l c a r e and t r e a t m e n t , p a r e n t - i l l c h i l d r e l a t i o n s h i p s , p h y s i c a l c o n d i t i o n , and c h i l d ' s r e a c t i o n t o h i s i l l n e s s , w i t h t h e f i r s t t h r e e h a v i n g t h e g r e a t e s t e f f e c t . She d i d n o t i n c l u d e s i b l i n g s o f c h i l -- 13 -dren with cancer i n her sample nor d i d she attempt to c o r -r e l a t e f i n d i n g s with d i s e a s e e n t i t y . Lavigne and Ryan ( 1 9 7 9 ) , i n examining d i s c r e p a n c i e s i n f i n d i n g s between s t u d i e s done by Gath ( 1 9 7 2 ) and Tew and Laurence ( 1 9 7 3 ) , thought t h a t perhaps the d i s c r e p a n c i e s i n f i n d i n g s c o u l d be s p e c i f i c to each d i s e a s e p r o c e s s . They designed a study which looked a t i n c i d e n c e of s i b l i n g ad-justment problems i n groups composed of 3 7 s i b l i n g s o f c h i l d r e n having p l a s t i c surgery, 5 7 s i b l i n g s of c h i l d r e n with c o n g e n i t a l h e a r t d i s e a s e , and 6 2 s i b l i n g s of hematology c l i n i c p a t i e n t s ( a l l but two p a t i e n t s had leukemia or other cancerous c o n d i t i o n s ) . The L o u i s v i l l e Behavior C h e c k l i s t was completed by parents who r a t e d the p a t i e n t ' s youngest and o l d e s t s i b l i n g between the ages of 3 and 1 3 y e a r s . In the c o n t r o l group," parents were asked to r a t e the youngest and o l d e s t s i b l i n g between 3 and 1 3 of a s p e c i f i e d c h i l d . They found t h a t a n a l y s i s of c o v a r i a n c e i n d i c a t e d no d i f -f e rences between i l l n e s s groups and h e a l t h y c o n t r o l s on a g g r e s s i o n , h y p e r a c t i v i t y , or l e a r n i n g d i s a b i l i t y s c a l e s . However, on the s o c i a l withdrawal s c a l e , the s i b l i n g s of the c h r o n i c a l l y i l l c h i l d r e n as a t o t a l group were s i g n i f i c a n t l y more withdrawn than s i b l i n g s of h e a l t h y c h i l d r e n , and w i t h i n the former group s i b l i n g s of p l a s t i c surgery c h i l d r e n were most withdrawn. T h i s p a t t e r n was repeated on the s c a l e measuring s i b l i n g ' s i r r i t a b i l i t y . When the s i b l i n g s of hematology p a t i e n t s were compared d i r e c t l y with h e a l t h y s i b l i n g s they were shown as a group t o have a tendency to be more withdrawn, i n h i b i t e d or f e a r f u l , - 14 -and i r r i t a b l e , but not more l e a r n i n g d i s a b l e d or a g g r e s s i v e . Male s i b l i n g s of the hematology p a t i e n t s between the ages of 7 and 13 appeared to have more adjustment problems than females i n the same age group. However, the study d i d p o i n t out t h a t not a l l and probably not most of the s i b l i n g s of hematology p a t i e n t s were having t r o u b l e s coping. Rather, more s i b l i n g s of p l a s t i c surgery p a t i e n t s were having prob-lems. Is i t p o s s i b l e t h a t t h e r e i s a s i g n i f i c a n t f a c t o r r e l a t i v e t o the i l l n e s s t h a t i s a f f e c t i n g the s i b l i n g s p e r c e p t i o n of the i l l n e s s experience and consequently h i s coping c a p a c i t y ? T h i s study while g i v i n g a d d i t i o n a l data about a p o p u l a t i o n at r i s k does not address the experience from the p o i n t , of view of the s i b l i n g ' s p e r c e p t i o n nor attempt to give any i n f o r m a t i o n about h i s a t t i t u d e s to or understanding about the i l l n e s s experience. l i e s (1979) conducted a p i l o t study i n t e r v i e w i n g s i b -l i n g s of f i v e c h i l d r e n aged 9 to 11 years whose b r o t h e r or s i s t e r had cancer, each i n a d i f f e r e n t s t a t e of the i l l n e s s . Although the stages were d e f i n e d as onset of treatment, f i r s t r e m i s s i o n , f i r s t e x a c e r b a t i o n , subsequent r e m i s s i o n , and t e r m i n a l s t a t u s , the r e s u l t s are not r e p o r t e d with r e f e r e n c e t o the stage of the i l l n e s s . However, change appears to be the most c o n s i s t e n t f i n d i n g with s i b l i n g s i d e n t i f y i n g change i n i n t e r p e r s o n a l r e l a t i o n s h i p s and the e x t e r n a l environment. The review of the l i t e r a t u r e as o u t l i n e d above would i n d i c a t e t h a t s i b l i n g s are d e f i n i t e l y a f f e c t e d by the p r e s -- 15 -e n c e o f p e d i a t r i c c a n c e r . How t h e y a r e a f f e c t e d , and t h e l o n g - t e r m r a m i f i c a t i o n s a r e l e s s c l e a r . The s i b l i n g s d e -f i n i t i o n o f t h e e x p e r i e n c e has n o t b een a d d r e s s e d i n any o f t h e s t u d i e s . The l i t e r a t u r e r e v i e w e d c o n t a i n s some d i r e c -t i o n t o a s p e c t s o f t h e i l l n e s s e x p e r i e n c e w h i c h may be r e l e v a n t t o s i b l i n g p e r c e p t i o n . SIBLINGS S c h v a n e v e l d t and I h i n g e r (1979) s t a t e : C I t i s r e a s o n a b l e t o assume t h a t t h e e x p e r i e n c e s c h i l d r e n s h a r e w i t h s i b l i n g s have a p r o f o u n d i n f l u e n c e on t h e i r s o c i a l i z a t i o n and p e r s o n a l i t y d e v e l o p m e n t p r o c e s s e s (p. 4 5 3 ) . A l t h o u g h t h i s must be t r u e , t h e r e i s l i t t l e r e s e a r c h a v a i l -a b l e a b o u t s i b l i n g r e l a t i o n s h i p s w h i c h w i l l h e l p i n t h e u n d e r s t a n d i n g o f t h e i m p a c t on a s i b l i n g o f l i v i n g w i t h a b r o t h e r o r s i s t e r who i s b e i n g t r e a t e d f o r c a n c e r . T h e r e i s a l a r g e body o f r e s e a r c h a t t e m p t i n g t o e s -t a b l i s h a r e l a t i o n s h i p between o r d i n a l p o s i t i o n o f s i b l i n g s and a v a r i e t y o f v a r i a b l e s . S c h v a n e v e l d t and I h i n g e r (1979) c o n d u c t e d a c r i t i c a l r e v i e w o f t h e l i t e r a t u r e f o r t h e p u r -p o s e o f t h e o r y c o n s t r u c t i o n r e l a t e d t o s i b l i n g s . They c o n -c l u d e d as a p a r t o f t h i s r e v i e w : I t i s t o o s i m p l i s t i c t o hope t h a t a s t r u c t u r a l v a r i a b l e s u c h as o r d i n a l p o s i t i o n c o u l d p o s s i b l y h ave e f f e c t s on s u c h a d i v e r s e s e t o f c h i l d and a d u l t b e h a v i o r s (p. 4 5 6 ) . - 16 -They have i d e n t i f i e d sample problems, l a c k of t h e o r e t i c a l framework, lack of t h e o r e t i c a l i n t e r p r e t a t i o n , and measure-ment problems as being f a c t o r s i n making t h i s body of r e -search l e s s u s e f u l than i t c o u l d be i n c o n t r i b u t i n g to c o n s t r u c t i n g t h e o r e t i c a l f o r m u l a t i o n s about s i b l i n g r e l a -t i o n s h i p s . They propose the f o l l o w i n g assumptions which t h i s i n v e s t i g a t o r f i n d s u s e f u l i n viewing the s i b l i n g group w i t h i n the f a m i l y : 1. The f a m i l y can be viewed as having t h r e e separate subsystems: spousal, p a r e n t a l - c h i l d , and s i b l i n g -s i b l i n g . A l l of these subsystems f u n c t i o n as semiclosed systems w i t h i n the f a m i l y group. 2. S i b l i n g s are both r e c i p i e n t s and i n s t i g a t o r s of s o c i a l i z a t i o n . Family i n t e r a c t i o n i s a dynamic arena i n which spouses a f f e c t each other, parents a f f e c t c h i l d r e n , c h i l d r e n a f f e c t parents, and s i b l i n g s a f f e c t each other. 3. S i b l i n g i n t e r a c t i o n i s a continuous developmental process not l i m i t e d to the e a r l y " c r i t i c a l " y e a r s . 4. The nature of f a m i l y composition and i n t e r a c t i o n are determining f a c t o r s i n p e r s o n a l i t y development and s o c i a l behaviors of members. 5. S i b l i n g groups have d i s t i n c t i v e group p r o p e r t i e s and c h a r a c t e r i s t i c s as do other small groups. Ad d r e s s i n g s i b l i n g i n t e r a c t i o n more s p e c i f i c a l l y , Bank and Kahn (1975) have, on the b a s i s of a l i t e r a t u r e review and t h e i r own c l i n i c a l experience, suggested ways of con-c e p t u a l i z i n g s i b l i n g i n f l u e n c e . They have i d e n t i f i e d the f o l l o w i n g f u n c t i o n s t h a t s i b l i n g s serve f o r one another: 1. I d e n t i f i c a t i o n and d i f f e r e n t i a t i o n - these pro-cesses p r o v i d e f o r v i c a r i o u s l e a r n i n g and l i v i n g w i t h a c h i l d determining through another's be-h a v i o r ways i n which (s)he would or would not l i k e t o be l i k e a s i b l i n g . 2. Mutual r e g u l a t i o n - t h i s allows the o p p o r t u n i t y of t r y i n g new behaviors and r o l e s with the r e g u l a t o r y process t a k i n g p l a c e i n the r e l a t i o n s h i p between equals. 3. D i r e c t s e r v i c e s - these may occur i n s i d e or out-s i d e of the f a m i l y and i n c l u d e such t h i n g s as l e n d i n g money, t e a c h i n g s k i l l s , m a n i p u l a t i n g f r i e n d s h i p s f o r each other, a c t i n g as b u f f e r s f o r each other and so on. 4. D e a l i n g with parents - i n c l u d i n g such t h i n g s as b a l a n c i n g the power of parents, j o i n i n g t o g e t h e r to n e g o t i a t e , m a i n t a i n i n g or b e t r a y i n g c o n f i d e n c e s about each o t h e r ' s behavior, mediating between one another and between themselves and t h e i r parents, mediating between the o u t s i d e world and t h e i r par-ents, mediating between t h e i r parents, and f i n a l l y p i o n e e r i n g which occurs when one s i b l i n g does something new, thereby g i v i n g other s i b l i n g s p e r m i s s i o n t o do the same t h i n g (pp. 319 - 324). I t would appear t h a t r e l a t i o n s h i p s which s i b l i n g s have with other f a m i l y members are both s t r u c t u r a l and func-t i o n a l . S t r u c t u r a l r e l a t i o n s h i p s occur because of p h y s i c a l p r o x i m i t y of a s i b l i n g t o a s i b l i n g , or a s i b l i n g t o a parent. F u n c t i o n a l r e l a t i o n s h i p s are r e l a t e d t o m a i n t a i n i n g or promoting some type of b e h a v i o r a l i n t e r a c t i o n with anoth-er f a m i l y member. The f a m i l y member may or may not be p h y s i c a l l y i n the presence of the s i b l i n g f o r a f u n c t i o n a l r e l a t i o n s h i p to be o c c u r r i n g . These- r e l a t i o n s h i p s have as one of t h e i r goals a c h i e v i n g one or more of the f u n c t i o n s s i b l i n g s serve f o r one another as i d e n t i f i e d above. - 18 -F o l l o w i n g t h r o u g h on t h e a s s u m p t i o n s o f S c h v a n e v e l d t and I h i n g e r , t h e above i n t e r a c t i o n s a r e by and l a r g e h a -b i t u a l b o t h a t t h e i n d i v i d u a l and a t t h e g r o u p l e v e l . I f , however, some e n v i r o n m e n t a l change o c c u r s , t h e h a b i t u a l ways o f b e h a v i n g and r e l a t i n g may o r may n o t be e f f e c t i v e . The i n d i v i d u a l s i b l i n g s w i l l be a f f e c t e d , and t h e s i b l i n g g r o u p w i l l be a f f e c t e d . The r a m i f i c a t i o n s o f t h i s a r e t h a t t h e c o m m u n i c a t i o n n e t w o r k , power, a f f e c t i v e r e l a t i o n s h i p s , and c l i q u e a l i g n m e n t s c a n a l l be a l t e r e d . How t h e y w i l l be a l t e r e d w i l l depend on t h e w o r l d v i e w o f t h e i n d i v i d u a l . METHODOLOGY D i e r s (1979) s u g g e s t s p r o b l e m s s i m i l a r t o t h e one w h i c h t h e s t u d y b e i n g r e p o r t e d p o s e s - c o n c e p t u a l i z i n g t h e s i b -l i n g ' s p e r c e p t i o n o f day t o day l i v i n g when a n o t h e r c h i l d i n t h e f a m i l y i s b e i n g t r e a t e d f o r c a n c e r - c a n be a p p r o a c h e d f r o m t h e p e r s p e c t i v e o f a f a c t o r - s e a r c h i n g s t u d y . F a c t o r s e a r c h i n g s t u d i e s a r e a p p r o p r i a t e f o r c a t e g o r i z i n g , c l a s s -i f y i n g o r c o n c e p t u a l i z i n g s i t u a t i o n s . I n t h e s t u d y b e i n g r e p o r t e d , t h e t a s k i s c o n c e p t u a l i z i n g . D i e r s f u r t h e r s t a t e s t h e method i n t r o d u c e d by G l a s e r and S t r a u s s as d i s c o v e r y o f gr o u n d e d t h e o r y h as as i t s g o a l c o n c e p t u a l i z a t i o n o f an e v e n t o r s i t u a t i o n as o p p o s e d t o d e s c r i b i n g i t . T h i s i s done by d e r i v i n g a b s t r a c t i o n s o r c o n c e p t s f r o m t h e d a t a c o l l e c t e d ( G l a s e r and S t r a u s s 1967; G l a s e r 1978). - 19 -T h i s method was f i r s t d e t a i l e d by G l a s e r and S t r a u s s ( 1 9 6 7 ) i n the r e p o r t of t h e i r study of death and dying with the focus on the experience of dying i n h o s p i t a l s . Since then others have used the method to b e t t e r understand a s i t u a t i o n or experience i n conceptual terms. I t was used by Wilson ( 1 9 7 7 ) as she attempted to gain understanding of the e x i s t e n c e of a r a d i c a l i n s t i t u t i o n i n a c o n s e r v a t i v e so-c i e t y . S t e r n ( 1 9 8 0 ) d e s c r i b e d the use she made of t h i s method to understand how s t e p f a t h e r s were i n c o r p o r a t e d i n t o a f a m i l y . G l a s e r ( 1 9 7 8 ) e l a b o r a t e d on the method g i v i n g more s p e c i f i c procedures f o r r e s e a r c h e r s to f o l l o w . The r e p o r t s of the use of t h i s method i n d i c a t e t h a t i t i s process o r i e n t e d being concerned with the movement of l i f e through time as opposed to being concerned with such f a c t o r s as s o c i a l c l a s s , sex, s t a t u s , group, o r g a n i z a t i o n and so on. G l a s e r ( 1 9 7 8 ) i d e n t i f i e d two b a s i c types of processes which he termed s o c i a l - p s y c h o l o g i c a l and s o c i a l -s t r u c t u r a l . Examples of the former i n c l u d e s o c i a l i z a t i o n , becoming, n o r m a l i z i n g and examples of the l a t t e r are bureau-c r a t i z a t i o n , c o d i f i c a t i o n and f o r m a l i z a t i o n . SUMMARY OF THE LITERATURE REVIEW The l i t e r a t u r e i n d i c a t e s t h a t s i b l i n g s of c h i l d r e n being t r e a t e d f o r cancer are a f f e c t e d by the i l l n e s s ex-p e r i e n c e . I t i s l e s s c l e a r whether the e f f e c t s are p o s i t i v e or n e g a t i v e , t r a n s i e n t or permanent. The s i b l i n g ' s per-- 20 -c e p t i o n of the experience i s not addressed other than i n one p i l o t study which i n d i c a t e d change was the dominant f a c t o r i d e n t i f i e d by the s i b l i n g s . The constant comparative method of G l a s e r and St r a u s s appears t o be a p p r o p r i a t e t o accomplish the purpose of t h i s study which i s to c o n c e p t u a l i z e the s i b l i n g ' s p e r c e p t i o n of the experience of day to day l i v i n g when a c h i l d i n the f a m i l y i s being t r e a t e d f o r cancer, by seeking answers t o the questions posed: 1. What concepts which r e l a t e t o the s i b l i n g s per-c e p t i o n , can be d e r i v e d from the s i b l i n g s d e s c r i p -t i o n of the experience of day to day l i v i n g when a c h i l d i n the f a m i l y i s being t r e a t e d f o r cancer? 2. What i s the r e l a t i o n s h i p between these concepts? The p r e c i s e methodology employed i n the conduct of the study i s d e s c r i b e d i n Chapter I I I . - 21 -CHAPTER I I I : METHODOLOGY INTRODUCTION The purpose of t h i s study was to c o n c e p u t a l i z e s i b -l i n g ' s p e r c e p t i o n of day to day l i v i n g when another c h i l d i n the f a m i l y i s being t r e a t e d f o r cancer. As d e s c r i b e d i n Chapter I I , a review o f the l i t e r a t u r e i n d i c a t e d the q u a l i -t a t i v e paradigm would be a p p r o p r i a t e f o r the conduct of such a study. T h i s chapter d e t a i l s how the r e s e a r c h data were obt a i n e d i n c l u d i n g the s e l e c t i o n of p a r t i c i p a n t s , c o n t a c t i n g the f a m i l i e s , making c o n t a c t with the s i b l i n g s , e t h i c a l c o n s i d e r a t i o n s , the data c o l l e c t i o n t o o l , c o l l e c t i n g the data, and the a n a l y s i s of the data. OBTAINING THE SAMPLE The r e s e a r c h e r found o b t a i n i n g a sample f o r a study i n which the p o p u l a t i o n was composed of s i b l i n g s of c h i l d r e n w i t h cancer to be complex. The p r o c e s s i n t h i s study was f i r s t t o c o n t a c t the Nursing Research Committee of the la r g e general h o s p i t a l where the oncology c l i n i c was l o c a t e d f o r p e r m i s s i o n to d i s c u s s with the p h y s i c i a n i n charge of the c l i n i c the p o s s i b i l i t y o f conducting the study i n q u e s t i o n . T h i s was done by su b m i t t i n g t o the committee a w r i t t e n request and a copy of the study p r o p o s a l . When t h i s p e r m i s s i o n had been - 22 -obtained the r e s e a r c h e r then met with the p h y s i c i a n i n charge of the oncology c l i n i c t o d i s c u s s the study i n de-t a i l . The p h y s i c i a n met with members of the m u l t i d i s c i -p l i n a r y oncology team and obtained consent f o r the study t o take p l a c e . The members of the team determined the pro-cedure the r e s e a r c h e r would f o l l o w t o ga i n access t o a s u i t a b l e p o p u l a t i o n . I t was decided t h a t the r e s e a r c h e r , i n c o n j u n c t i o n with •the s o c i a l worker, would s e l e c t f a m i l i e s which met the c r i t e r i a e s t a b l i s h e d by the r e s e a r c h e r . Permission would then be obtained from the p h y s i c i a n i n charge of the i l l c h i l d ' s medical care t o c o n t a c t the f a m i l y . The f i r s t person to c o n t a c t the f a m i l y about the study c o u l d be the p h y s i c i a n , the s o c i a l worker, or the r e s e a r c h e r . The s o c i a l worker agreed t o a c t as a resource person t o the r e s e a r c h e r should there be any p s y c h o l o g i c a l sequelae f o r any s i b l i n g as a r e s u l t of the study. T a l k i n g with c h i l d r e n about such a p o t e n t i a l l y e m o t i o n a l l y charged t o p i c as i s the s u b j e c t of t h i s study may arouse f e e l i n g s of a n x i e t y w i t h i n the s i b l i n g s with which they have d i f f i c u l t y coping (Rich 1968; S p i n e t t a 1978). The parents were t o l d of t h i s p o t e n t i a l problem and asked to c o n t a c t the r e -searcher i f they had any concerns. The oncology team had some r e s e r v a t i o n s about such a study being conducted. They have a very c l o s e , long-term r e l a t i o n s h i p with the c h i l d r e n with cancer and with the pare n t s . T h i s i n t u r n appears t o be t r a n s l a t e d i n t o an - 23 -e x p r e s s i o n o f p r o t e c t i v e b e h a v i o r t o w a r d t h e whole f a m i l y . O t h e r r e s e a r c h e r s had been i n t e r e s t e d i n g a i n i n g a c c e s s t o t h e f a m i l i e s i n q u e s t i o n and t h e o n c o l o g y team were r e -l u c t a n t t o e x p o s e t h e i r c l i e n t e l e . V i e w i n g t h e o n c o l o g y team - f a m i l y r e l a t i o n s h i p i n t e r m s o f s y s t e m s t h e o r y , a s u b s y s t e m c o n s i s t i n g o f t h e o n c o l o g y team members and t h e f a m i l y i s f o r m e d . As s u c h , t h e s u b s y s t e m p o s s e s s e s t h e c h a r a c t e r i s t i c s o f a s y s t e m i n c l u d i n g a b o u n d a r y ( B e r t a l a n f f y 1968). I n t h i s c a s e t h e p h y s i c i a n as a member o f t h e s y s t e m i s c o n t r o l l i n g a c c e s s t o members o f t h e s y s t e m , t h e f a m i l y , by c l e a r l y d e f i n i n g t h e b o u n d a r y and t h e p r o c e d u r e f o r p e n e t r a t i n g t h a t b o u n d a r y . CRITERIA FOR SAMPLE SELECTION AND UNDERLYING RATIONALES The sample w h i c h was s e l e c t e d c o u l d be d e f i n e d as a judgement sample (Honigman 1970, p. 2 6 8 ) . T h a t i s , t h e i n f o r m a n t s were s e l e c t e d t o c o n f o r m t o c e r t a i n c r i t e r i a . S p e c i f i c a l l y : 1. T h e r e were two o r more c h i l d r e n i n t h e f a m i l y , one o f whom had been d i a g n o s e d as h a v i n g an o n c o l o g y r e l a t e d d i s e a s e . 2. One o r more s i b l i n g s o f t h e i l l c h i l d a g r e e d t o p a r t i c i p a t e . 3. The c h i l d w i t h t h e o n c o l o g y r e l a t e d d i s e a s e was c u r r e n t l y b e i n g t r e a t e d b u t was p a s t t h e i n i t i a l h o s p i t a l i z a t i o n 4. The s i b l i n g s o f t h e c h i l d w i t h c a n c e r were between t h e ages o f 8 and 18 y e a r s . - 24 -5. The s i b l i n g s were l i v i n g a t home. 6. The s i b l i n g s were f l u e n t i n E n g l i s h . 7. The f a m i l i e s l i v e d w i t h i n a one h o u r d r i v e o f t h e o n c o l o g y c l i n i c . The r a t i o n a l e s u n d e r l y i n g t h e c r i t e r i a i n c l u d e d t h e f o l l o w i n g . T h e r e must be a t l e a s t one c h i l d i n t h e f a m i l y o t h e r t h a n t h e c h i l d w i t h c a n c e r f o r a s i b l i n g r e l a t i o n s h i p t o e x i s t . T h e r e d i d n o t seem t o be any r e a s o n f o r l i m i t i n g t h e numbers o f s i b l i n g s a g r e e i n g t o p a r t i c i p a t e a s , c o n -s i s t e n t w i t h t h e d e f i n i t i o n o f p e r c e p t i o n r e c o r d e d i n Chap-t e r I , e a c h i n d i v i d u a l ' s p e r c e p t i o n o f a s i t u a t i o n i s u n i q u e a l t h o u g h some components may be s h a r e d . B e c a u s e t h e s t u d y was c o n c e r n e d w i t h t h e p e r c e p t i o n o f day t o day l i v i n g and n o t w i t h t h e a d j u s t m e n t o f s i b l i n g s t o h o s p i t a l i z a t i o n o f t h e i l l c h i l d o r t h e i n i t i a l r e a c t i o n t o t h e p r e s e n c e o f c a n c e r t h e c r i t e r i o n was i n c l u d e d t h a t t h e i n i t i a l h o s p i t a l -i z a t i o n p e r i o d be o v e r . H o s p i t a l i z a t i o n o f a s i b l i n g i s a r e c o g n i z e d c r i s i s e v e n t i n t h e l i f e o f a c h i l d ( C o d d i n g t o n 1972, p. 207) and an a d j u s t m e n t p e r i o d must be a l l o w e d f o l l o w i n g a c r i s i s b e f o r e s t u d y i n g t h e o n g o i n g b u s i n e s s o f day t o day l i v i n g ( A g u i l e r a and M e s s i c k 1978, p. 6 7 ) . The l i t e r a t u r e i n d i c a t e d t h e t r e a t m e n t e p i s o d e i s a s i g n i f i c a n t t i m e i n t h e o n g o i n g l i f e o f t h e c h i l d w i t h c a n c e r ( B l u e b o n d - L a n g n e r 1978). Systems l i t e r a t u r e s u p p o r t s t h a t ' f a c t o r s a f f e c t i n g one f a m i l y member a f f e c t o t h e r s ( H o r t o n 1978). I t c a n be c o n c l u d e d t h a t t r e a t m e n t e p i s o d e s may be s i g n i f i c a n t i n t h e o n g o i n g l i f e o f t h e s i b l i n g t h e r e -f o r e , t h e r e q u i r e m e n t f o r t h e c h i l d t o c u r r e n t l y be u n d e r -- 2 5 -going treatment was i n c l u d e d . The method of data c o l l e c t i o n , the i n t e r v i e w , p r e -supposed the c h i l d be able t o communicate with the r e -searcher v e r b a l l y . T h i s imposed the r e s t r i c t i o n of being f l u e n t i n the language of the r e s e a r c h e r and suggested some age parameters. E i g h t was a r b i t r a r i l y s e l e c t e d as the minimum age a t which c h i l d r e n are more l i k e l y to be able t o communicate v e r b a l l y , r e c o g n i z i n g t h a t some l a t i t u d e c o u l d be allowed i n meeting the c r i t e r i o n . T h i s age c o i n c i d e s approximately w i t h the stage of concre t e o p e r a t i o n s d e f i n e d by P i a g e t (Piaget and Inhelder 1969). T h i s p e r i o d beginning about age 6 i s the stage when c o g n i t i v e a b i l i t i e s of the c h i l d are expanded so t h a t the c h i l d need not a c t u a l l y see o p e r a t i o n s performed to know about them. The c h i l d now has the c o g n i t i v e s t r u c t u r e s e n a b l i n g him or her to t h i n k about a c t i v i t i e s without having to experience them. T h i s a b i l i t y must be present f o r the c h i l d to be able t o p a r t i c i p a t e i n a s t r a i g h t f o r w a r d i n t e r v i e w . E i g h t e e n was s e t as the upper age l i m i t with the r e a -soning being t h a t p a s t t h a t age the c h i l d would q u i t e l i k e l y be i n v o l v e d with l e a v i n g the p a r e n t a l home. T h i s i s the age of man, t h a t of l a t e adolescence and young adulthood ( E r i k -son 1963), when peers have prime importance and the young a d u l t i s ready f o r intim a c y with another o u t s i d e of the f a m i l y boundary. As the day to day l i v i n g with a c h i l d with an oncology r e l a t e d d i s e a s e was the focus, l i v i n g with the same f a m i l y as the i l l c h i l d was co n s i d e r e d an e s s e n t i a l c r i t e r i o n f o r r e g u l a r a s s o c i a t i o n . - 26 -MAKING CONTACT WITH THE SIBLINGS Parents act as gatekeepers i n the f a m i l y and access to a study p o p u l a t i o n of c h i l d r e n i s through them (Bogdan and T a y l o r 1975, p. 3 1 ) . Kantor and Lehr (1976) found parents act t o l i m i t the p e n e t r a t i o n of the boundaries of the f a m i l y system. They do t h i s by r e s t r i c t i n g movement of i n f o r m a t i o n i n t o and out of the system and by l i m i t i n g access to f a m i l y members. The r e s e a r c h e r found evidence of t h i s k i n d of behavior i n g a i n i n g access to the s i b l i n g s . The r e -s e a r c h e r ' s i n i t i a l p e n e t r a t i o n of the f a m i l y boundary i s d e s c r i b e d i n t h i s s e c t i o n . The f i r s t f a m i l y s e l e c t e d was approached i n i t i a l l y by the p h y s i c i a n who asked a parent d u r i n g a r e g u l a r c l i n i c appointment i f the r e s e a r c h e r c o u l d c o n t a c t them. The parent agreed. The p h y s i c i a n then gave p e r m i s s i o n f o r the r e s e a r c h e r to make the c o n t a c t . T h i s was done by a t e l e -phone c a l l t o the f a m i l y home e x p l a i n i n g to the mother the nature and purpose of the study, r e q u e s t i n g p e r m i s s i o n to meet with the f a m i l y f o r f u r t h e r d i s c u s s i o n aiming at even-t u a l p a r t i c i p a t i o n of the s i b l i n g s i n the study. The parent i n d i c a t e d she would d i s c u s s the proposal with the c h i l d r e n and an a p p r o p r i a t e time f o r the r e s e a r c h e r to c a l l back was suggested. On c a l l back, the parent i n d i c a t e d three c h i l -dren were w i l l i n g to p a r t i c i p a t e i n the study to the extent t h a t they agreed t o a f i r s t i n t e r v i e w . The t i m i n g of the f i r s t i n t e r v i e w was to be decided i n s e v e r a l weeks because of other commitments t h a t the f a m i l y had. - 27 -The second f a m i l y s e l e c t e d was approached f i r s t by the r e s e a r c h e r who a f t e r o b t a i n i n g p e r m i s s i o n from the p h y s i c i a n met the mother i n person at the oncology c l i n i c and de-s c r i b e d the nature and purpose of the study. The mother then spoke to the c h i l d r e n . The r e s e a r c h e r f o l l o w e d up the i n i t i a l c o n t a c t by telephone and was t o l d f i v e c h i l d r e n had agreed to p a r t i c i p a t e . T h i s i n t e r v i e w took p l a c e w i t h i n two days of the f i r s t c o n t a c t . F o l l o w i n g the i n i t i a l c o n t a c t with the f i r s t two fami-l i e s s e l e c t e d , e i g h t c h i l d r e n had agreed to p a r t i c i p a t e . T h i s became the study p o p u l a t i o n . A q u a l i t a t i v e study i s based on the premise t h a t " a l l s e t t i n g s and s u b j e c t s are s i m i l a r while r e t a i n i n g t h e i r uniqueness" and general s o c i a l processes can be s t u d i e d i n any s i n g l e s e t t i n g or through any s i n g l e s u b j e c t (Bogdan and T a y l o r 1975, p. 12). The sample s i z e r e q u i r e d i s dependent on the emerging data and the study design allows f o r f l e x -i b i l i t y i n adding s u b j e c t s as r e q u i r e d (Glaser 1978). Due to c o n s t r a i n t s i n terms of time a v a i l a b l e f o r conducting the study, no a d d i t i o n a l s u b j e c t s were added. I f the data had not y i e l d e d a core v a r i a b l e a d d i t i o n a l i n t e r v i e w s or a d d i -t i o n a l s u b j e c t s would have been necessary. ETHICAL CONSIDERATIONS E t h i c s i s concerned with the Tightness or wrongness of a c t i o n s (Schachtel 1978). The e t h i c a l c o n s i d e r a t i o n s i n - 28 -t h i s study c e n t e r p r i m a r i l y around the i s s u e s of o b t a i n i n g informed consent from parents p e r m i t t i n g t h e i r c h i l d r e n t o p a r t i c i p a t e i n the study, o b t a i n i n g informed consent from the c h i l d r e n themselves, and the p a r e n t s ' r i g h t t o a c t as gatekeeper of i n f o r m a t i o n e n t e r i n g and l e a v i n g the f a m i l y system (p. 36 of t h i s s t u dy), and the r e s e a r c h e r s respon-s i b i l i t y t o the consent g i v e r s on completion of the study. A. The P a r e n t a l Consent O r i g i n a l l y the r e s e a r c h e r had intended t o use a l e t t e r t o i n t r o d u c e the study t o par e n t s . As the process of sample s e l e c t i o n proceeded, t h a t d i d not seem a p p r o p r i a t e . The contents of the l e t t e r were subsequently i n c o r p o r a t e d i n t o the p a r e n t a l consent form (Appendix "A"). When s a n c t i o n i n g access to a p o p u l a t i o n f o r the pur-poses of doing a study, the consent g i v e r s and the pop-u l a t i o n have a r i g h t t o know t h a t the r e s e a r c h e r i s com-petent t o conduct the res e a r c h , why the study i s being done, and what the r o l e of the s u b j e c t w i l l be (MacElveen 1978). With t h i s i n f o r m a t i o n as a guide, the s u b j e c t can determine, on an informed b a s i s , whether or not he or she wishes t o p a r t i c i p a t e . The consent form s p e c i f i e d the q u a l i f i c a t i o n s of the r e s e a r c h e r , the purpose of the study, the p o t e n t i a l s u b j e c t s , and the nature of the data g a t h e r i n g technique. The form t h a t was used a l s o i n q u i r e d as to whether or not the parents had shared the d i a g n o s i s of cancer with the s i b l i n g s and guaranteed not to d i s c l o s e i t i f they had not done so. T h i s was important t o p r o t e c t the parent's r i g h t - 29 -t o be the i n f o r m a t i o n g i v e r . P ermission was requested to audio tape r e c o r d the c o n v e r s a t i o n s with the c h i l d r e n with anonymity being preserved by i d e n t i f y i n g the r e c o r d i n g with a code number and r e s t r i c t i n g access t o the tapes t o those d i r e c t l y i n v o l v e d i n the study. The r e s e a r c h e r ' s i n t e n t i o n was to dest r o y the tapes at the c o n c l u s i o n of the study. However, the s u b j e c t s and parents i n both f a m i l i e s asked i f they c o u l d have them and the r e s e a r c h e r agreed. The tapes were g i v e n t o the c h i l d r e n . The parents were assured t h a t any or a l l s i b l i n g s i n the f a m i l y c o u l d withdraw from the study without jeopardy to the c h i l d undergoing treatment f o r cancer, at any time. One parent from each f a m i l y signed t h i s form. B. Consent of the S i b l i n g s None of the c h i l d r e n were of l e g a l age t o s i g n consent forms. However, r e c o g n i z i n g the c h i l d ' s r i g h t t o not be a r e s e a r c h s u b j e c t (MacElveen 1978) and the r i g h t of informed consent (van Eys 1978), a form was designed e x p l a i n i n g t o the c h i l d the k i n d of i n f o r m a t i o n the r e s e a r c h e r was i n -t e r e s t e d i n o b t a i n i n g and r e q u e s t i n g p e r m i s s i o n to audio -tape r e c o r d the c o n v e r s a t i o n (Appendix "B"). The form a l s o i n d i c a t e d t o the c h i l d p e r m i s s i o n t o r e f u s e t o answer any qu e s t i o n s and p e r m i s s i o n t o terminate the c o n v e r s a t i o n a t any time. The c h i l d r e n each signed t h i s form, as an i n d i -c a t i o n t h a t they understood the procedure t o be f o l l o w e d and t h e i r p a r t i n i t . - 30 -C. The Parent as Gatekeeper G r a n t i n g a r e s e a r c h e r access to c h i l d r e n i n the f a m i l y cannot be construed as p a r e n t a l abandonment of the r i g h t t o c o n t r o l i n f o r m a t i o n flow. T h i s r e s e a r c h e r was very con-s c i o u s of the parents not g i v i n g up t h a t r i g h t . I t was ev i d e n t i n the request t o be giv e n the tapes at the end of the study. A parent of one s e t of s i b l i n g s was present f o r the f i r s t i n t e r v i e w encouraging the c h i l d r e n t o p a r t i c i p a t e and i n and out of the s e t t i n g d u r i n g the second i n t e r v i e w . In co n v e r s a t i o n s before and a f t e r the i n t e r v i e w s the parents sought assurance t h a t the r e s e a r c h e r had a c l e a r under-standing of usual f a m i l y r e l a t i o n s h i p s . The r e s e a r c h e r f e l t i t was necessary t o reas s u r e the parents t h a t the comments made by the c h i l d r e n were, i n the r e s e a r c h e r ' s experience, s i m i l a r t o the comments made by oth e r c h i l d r e n as i n f a c t they were. D. The Researcher's R e s p o n s i b i l i t y t o Consent G i v e r s The conducting of r e s e a r c h r e l a t e d t o human behavior seldom r e s u l t s i n the d i s c o v e r y of new i n f o r m a t i o n (Holt 1978). Researchers should help the consent g i v e r s t o understand t h i s . The r e s e a r c h can c o n t r i b u t e to the o r -g a n i z a t i o n of knowledge, and i n t h i s s p i r i t , a copy of the r e p o r t of t h i s study w i l l be made a v a i l a b l e - t o the oncology team which granted access t o the f a m i l i e s . A summary of the f i n d i n g s w i l l be sent t o each of the p a r t i c i p a n t f a m i l i e s . The r e s e a r c h e r w i l l be a v a i l a b l e t o d i s c u s s the study w i t h both groups. - 31 -THE INTERVIEW AS A DATA COLLECTION TOOL IN QUALITATIVE RESEARCH WITH CHILDREN The i n t e r v i e w i s u s e d i n t h i s s t u d y t o c o l l e c t d a t a . An i n t e r v i e w h a s b e en d e s c r i b e d as a "human b e i n g t a l k i n g t o a n o t h e r human b e i n g " ( R i c h 1968, p. 1 ) . The p h e n o m e n o l o g i -c a l p e r s p e c t i v e r e c o g n i z e s t h e s o c i a l n a t u r e o f t h e r e s e a r c h a c t . The v i e w o f t h e human s u b j e c t - a s - o b j e c t i s n o t v a l i d i n t h i s p a r a d i g m as i t c o n s i d e r s knowledge as s u b j e c t i v e and r e c o g n i z e s t h e f u s i o n o f t h e o b s e r v e r and t h e o b s e r v e d i n t h e a c t o f o b s e r v i n g ( D a v i s 1 9 78). C i c o u r e l (1964) r e m i n d s i n t e r v i e w e r s and t h o s e i n t e r p r e t i n g d a t a o b t a i n e d f r o m an i n t e r v i e w t h a t a b a s i c s o c i a l p r o c e s s i s i n v o l v e d . He s u g g e s t s " t h e i n t e r v i e w e r , t h r o u g h h i s i n t u i t i o n , must d e v e l o p a community w i t h t h e r e s p o n d e n t t h a t w i l l e n a b l e him t o e l i c i t f r a n k a n s w e r s . " (p. 7 5 ) . I n i n t e r v i e w i n g c h i l d r e n , i t i s i m p o r t a n t t o g i v e them t i m e t o t a l k . T h e r e i s a g r e a t d a n g e r o f o b t a i n i n g o n l y l i m i t e d d a t a i f p r o c e d u r e i s v e r y s t r u c t u r e d as t h e c h i l d may s i m p l y answer q u e s t i o n s and n o t f e e l s e c u r e enough t o e l a b o r a t e o r may n o t have a wide enough knowledge r a n g e t o be more a c c u r a t e i n r e s p o n s e s . However, t h e c h i l d does r e s p o n d t r u t h f u l l y f r o m h i s / h e r p o i n t o f v i e w . T h a t i s , t h e c h i l d ' s answers r e p r e s e n t t h e t r u t h . However, s i n c e t h e c h i l d ' s frame o f r e f e r e n c e and t h e i n t e r v i e w e r ' s may n o t be t h e same, t h e i n t e r v i e w e r ' s i n t e r p r e t a t i o n o f t h e t r u t h as r e l a t e d by t h e c h i l d and t h e c h i l d ' s may n o t be t h e same. I t i s t h e r e f o r e n e c e s s a r y t o t a k e t i m e t o e x p l o r e a t o p i c - 32 -f r o m s e v e r a l p o i n t s o f v i e w and p o s s i b l y e v e n a t d i f f e r e n t t i m e s t o e n s u r e t h e i n t e r v i e w e r u n d e r s t a n d s what i t i s t h a t t h e c h i l d i s t r y i n g t o s h a r e ( R i c h 1968). COLLECTING THE DATA The i n t e r v i e w c a n be compared t o a m e a s u r i n g t o o l ( C a n n e l l and Kahn 1968) and what i s b e i n g measured must be s p e c i f i e d . I n t h i s s t u d y , i t i s t h e s i b l i n g ' s p e r c e p t i o n o f day t o day l i v i n g when a n o t h e r c h i l d i n t h e f a m i l y i s b e i n g t r e a t e d f o r c a n c e r . T h i s i s b e i n g measured by s e e k i n g answers t o t h e q u e s t i o n s : What c o n c e p t s w h i c h r e l a t e t o t h e s i b l i n g ' s p e r -c e p t i o n c a n be d e r i v e d f r o m t h e s i b l i n g ' s d e s -c r i p t i o n s o f t h e e x p e r i e n c e o f day t o day l i v i n g when a c h i l d i n t h e f a m i l y i s b e i n g t r e a t e d f o r c a n c e r ? What a r e t h e r e l a t i o n s h i p s between t h e s e c o n c e p t s ? An i n t e r v i e w s c h e d u l e was c o n s t r u c t e d t o a c t as a map i n t h e p r o c e s s o f s e e k i n g answers t o t h e r e s e a r c h q u e s t i o n s ( A p p e n d i x " C " ) . The g e n e r a l a r e a s t o be c o v e r e d were de-r i v e d f r o m t h e l i t e r a t u r e on t h e f a m i l y and on c h r o n i c c h i l d h o o d i l l n e s s . I n c l u d e d were t h e s i b l i n g ' s a c t i v i t i e s , r e l a t i o n s h i p s and f e e l i n g s w i t h r e f e r e n c e t o t h e s u b j e c t i n q u e s t i o n , how t h e p r e s e n c e o f t h e c h i l d b e i n g t r e a t e d f o r c a n c e r i n t e r f e r e d w i t h t h e s i b l i n g ' s a c t i v i t i e s , t h e p o s -i t i v e and n e g a t i v e a s p e c t s o f h a v i n g a c h i l d b e i n g t r e a t e d f o r c a n c e r i n t h e f a m i l y , and i n f o r m a t i o n a b o u t s p e c i f i c i l l n e s s v a r i a b l e s . - 33 -A group i n t e r v i e w comparable to the rap s e s s i o n s de-s c r i b e d by Bogdan and T a y l o r (1975, p. 130) was u t i l i z e d f o r the f i r s t i n t e r v i e w s i n each f a m i l y . The technique used i n the i n t e r v i e w was to i n t r o d u c e a s u b j e c t from the i n t e r v i e w schedule i f i n the course of a c o n v e r s a t i o n the c h i l d r e n d i d not i n t r o d u c e one. Then, u s i n g the response of the c h i l d as a guide, to pursue t h a t t o p i c , t r y i n g t o c l a r i f y the c h i l d ' s view. When the f a m i l y group was together, the o l d e s t c h i l d i n the f a m i l y tended to respond most q u i c k l y t o the f o l l o w -up q u e s t i o n i n g . T h i s l e d t o the d e c i s i o n to i n t e r v i e w the c h i l d r e n s e p a r a t e l y . However, i n both f a m i l i e s , when t h i s was suggested as a p l a n f o r the second i n t e r v i e w , the younger c h i l d r e n i n d i c a t e d a p r e f e r e n c e f o r being i n t e r -viewed as a group. As younger c h i l d r e n appeared to be more r e l a x e d i n the group s e t t i n g , and more w i l l i n g to t a l k i n t h a t s i t u a t i o n , the r e s e a r c h e r agreed. With the o l d e s t c h i l d absent, i t was p o s s i b l e to f o l l o w through on a theme with the younger c h i l d r e n . Had t h i s not been the case, a t h i r d i n t e r v i e w , to be h e l d i n d i v i d u a l l y with each c h i l d would have been requested. The o l d e s t c h i l d i n each f a m i l y was i n t e r v i e w e d i n d i v i d u a l l y . The r e s e a r c h i n t e r v i e w was conducted p r i m a r i l y as a s e r i e s of open-ended and probing q u e s t i o n s seeking to c l a r -i f y the meaning of the experience f o r the s i b l i n g . During the i n t e r v i e w i t s e l f the r e s e a r c h e r attempted to i d e n t i f y concepts t h a t were o c c u r r i n g i n the data and to c e n t e r q u e s t i o n s on these. T h i s k i n d of q u e s t i o n i n g o c c u r r e d more - 34 -f r e q u e n t l y i n t h e s e c o n d i n t e r v i e w o f t h e s t u d y and i n s u b -s e q u e n t i n t e r v i e w s as d a t a a n a l y s i s had begun and t h e f o c u s o f t h e i n t e r v i e w s became more p a r t i c u l a r . T h i s i s i n k e e p -i n g w i t h t h e i n d u c t i v e a p p r o a c h o f g r o u n d e d t h e o r y where t h e t h e o r y emerges a f t e r d a t a c o l l e c t i o n b e g i n s and as i t emer-ges t h e r e s e a r c h e r c o n s t r u c t s t h e c o n c e p t u a l framework ( G l a s e r 1 9 7 8 ) . The p r o c e s s whereby t h e n a t u r e and t h e a n a l y s i s o f t h e d a t a d e t e r m i n e t h e s u b j e c t m a t t e r t o be s a m p l e d o r e v e n t h e p o p u l a t i o n t o be sampled i s t e r m e d t h e o r e t i c a l s a m p l i n g by G l a s e r ( 1 9 7 8 ) . I t c o n s i s t s o f a s s i g n i n g c o d e s t o raw d a t a a t t h e s t a r t o f d a t a c o l l e c t i o n , u s i n g t h e s e c o d e s t o g u i d e a d d i t i o n a l d a t a c o l l e c t i o n , c o n t i n u a l l y l o o k i n g f o r i n f o r -m a t i o n r e g a r d i n g t h e p r o p e r t i e s and r e l a t i o n s h i p s o f t h e c o d e s . The outcome o f t h i s a c t i v i t y as d e s c r i b e d by G l a s e r i s t h a t : t h e a n a l y s t p r o g r e s s i v e l y s e e s more i n h i s d a t a o f r e l e v a n c e and f i t as he e x p l a i n s how t h e b a s i c s o c i a l p r o c e s s r e s o l v e s t h e b a s i c s o c i a l p s y c h o l o -g i c a l p r o b l e m s o f t h e p a r t i c i p a n t s i n t h e s u b s t a n -t i v e a r e a u n d e r s t u d y ( p . 3 6 ) . As t h e c o m p a r i s o n , c o d i n g and r e - c o d i n g c o n t i n u e s , t h e c a t e g o r i e s become s a t u r a t e d . T h a t i s , no new i n f o r m a t i o n i s b e i n g added. A t t h i s p o i n t d a t a c o l l e c t i o n c a n c e a s e . The d i r e c t i o n f o r d a t a c o l l e c t i o n and t h e e x t e n t o f i t , t h u s comes f r o m t h e d a t a . - 35 -THE CIRCUMSTANCES OF THE INTERVIEWS B e c a u s e t h e i n t e r v i e w i s a s o c i a l e n c o u n t e r c o n s t r u c t e d by t h e i n t e r v i e w e r and t h e i n t e r v i e w e e , and t h e d a t a a r e p r o d u c t s o f t h a t e n c o u n t e r ( C i c o u r e l 1964), i t i s i m p o r t a n t t h a t t h e r e a d e r have a c c e s s t o i n f o r m a t i o n a b o u t t h e a c t u a l c i r c u m s t a n c e s o f t h e i n t e r v i e w s . T h i s w i l l be combined w i t h a b r i e f d e s c r i p t i o n o f e a c h f a m i l y . A. I n t e r v i e w s w i t h F i r s t F a m i l y The f i r s t f a m i l y c o n t a c t e d i s composed o f a mother, f a t h e r , male c h i l d age 14 y e a r s , male c h i l d age 12 y e a r s , f e m a l e c h i l d age 10 y e a r s , and t h e c h i l d w i t h t h e o n c o l o g y r e l a t e d d i s e a s e age 8 y e a r s . They l i v e i n a s m a l l community a b o u t one h o u r ' s d r i v e f r o m t h e o n c o l o g y c l i n i c . The i l l c h i l d goes t o s c h o o l w i t h i n t h e immediate community and t h e o t h e r c h i l d r e n , b e i n g i n h i g h e r g r a d e s , i n a community a b o u t a h a l f h o u r d r i v e away. T h i s means t h a t some o f t h e i r s o c i a l a c t i v i t i e s o c c u r i n t h e n e i g h b o r i n g community. When t h e r e s e a r c h e r spoke w i t h t h e f i r s t p a r e n t , she was n o t s u r e h e r c h i l d r e n w o u l d be i n t e r e s t e d i n b e i n g i n t e r v i e w e d , however, she a g r e e d t o ask them. She i n d i c a t e d h e r c h i l d r e n a l l v e r b a l i z e d w e l l , e s p e c i a l l y t h e o l d e r one, b u t t h o u g h t t h e y o u n g e r two s i b l i n g s m i g h t have d i f f i c u l t y t a l k i n g w i t h a s t r a n g e r . On c a l l back she i n d i c a t e d t h e c h i l d r e n had c o n s e n t e d . She d i d s a y she hoped t h e r e w o u l d o n l y be one i n t e r v i e w . The r e l u c t a n c e w h i c h a p p e a r s t o - 36 -u n d e r l i e p a r e n t a l agreement i s i n k e e p i n g w i t h t h e f u n c t i o n t h e f a m i l y s e r v e s o f c o n t r o l l i n g a c c e s s t o c h i l d r e n and c h i l d r e n ' s a c c e s s t o e x p e r i e n c e s o u t s i d e t h e u s u a l f a m i l y b o u n d a r y ( K a n t o r a n d L e h r 1 9 76). The l o g i s t i c s o f o r g a n i z i n g t h e i n t e r v i e w t i m e t h e n p r e s e n t e d somewhat o f a p r o b l e m as t h e c h i l d r e n were engaged i n many o u t s i d e a c t i v i t i e s . A l s o , t h i s mother wanted t h e i l l c h i l d o c c u p i e d i n s u c h a way t h a t he w o u l d n o t be aware o f what was g o i n g on. E v e n t u a l l y , an a p p o i n t m e n t was a r -r a n g e d . The p l a n was t h a t t h e f a m i l y would have an e a r l y s u p p e r on an e v e n i n g t h a t t h e c h i l d w i t h t h e d i a g n o s i s o f c a n c e r had a s o c c e r p r a c t i c e . When t h e i n t e r v i e w e r a r r i v e d as a r r a n g e d , t h e f a m i l y was j u s t a b o u t t o s i t down t o d i n n e r and t h e s o c c e r p r a c t i c e had b een c a n c e l l e d . The i n t e r v i e w e r w a i t e d i n a s e p a r a t e s e t t i n g w h i l e t h e f a m i l y a t e . The mother t h e n t o o k t h e y o u n g e s t c h i l d away. The o l d e s t c h i l d was n o t y e t home. The two y o u n g e r c h i l d r e n c h o s e t o be i n t e r v i e w e d t o g e t h e r . The s e t t i n g s e l e c t e d by t h e c h i l d r e n was one o f t h e i r bedrooms. One o f t h e s i b l i n g s c l o s e d t h e d o o r . We s a t on t h e f l o o r and began t o c h a t . About 10 m i n u t e s i n t o t h e i n t e r v i e w t h e o l d e s t c h i l d j o i n e d i n . The c h i l d r e n o f t h i s f a m i l y were e a g e r t o s h a r e t h e i r e x p e r -i e n c e s w i t h t h e r e s e a r c h e r . T h i s i s i n k e e p i n g w i t h t h e f i n d i n g s o f G r e e n ( 1 9 8 2 ) . A t t h e c o n c l u s i o n o f t h e i n t e r -v i e w , t h e y a g r e e d t o be i n t e r v i e w e d a g a i n . S i x months l a t e r t h e s e c o n d i n t e r v i e w t i m e was a r r a n g e d w i t h t h e p a r e n t . The r e s e a r c h e r r e q u e s t e d s e p a r a t e i n t e r -- 3 7 -views with each c h i l d . On a r r i v a l of the r e s e a r c h e r , the o l d e s t c h i l d was not at home and the other two asked i f they c o u l d be i n t e r v i e w e d together. T h i s was agreed to i n the i n t e r e s t s of m a i n t a i n i n g c o o p e r a t i o n . The c h i l d with cancer was at home du r i n g t h i s i n t e r v i e w , but apart from a l i t t l e s o c i a l c o n v e r s a t i o n a t the beginning of the i n t e r v i e w , was occupied p l a y i n g with a f r i e n d . The s e t t i n g t h i s time f o r the i n t e r v i e w (again chosen by the c h i l d r e n ) was an open p l a y area l o c a t e d between the bedrooms. As the o l d e s t c h i l d d i d not r e t u r n while the r e s e a r c h e r was t h e r e , another time was s e t to meet with him. T h i s time there was no h e s i t a n c y on the p a r t of the mother i n a r r a n g -i n g the meeting time. I t subsequently took p l a c e at a neighbor's, as when the r e s e a r c h e r a r r i v e d the c h i l d was t h e r e l o o k i n g a f t e r the neighbor's house and animals f o r the day. He was a l s o b a b y - s i t t i n g with h i s younger b r o t h e r s and s i s t e r , two of whom were at the house d u r i n g the i n t e r v i e w . The i n t e r v i e w s e t t i n g s e l e c t e d by the c h i l d was at a t a b l e i n an e a t i n g area next to the k i t c h e n . One s i b l i n g was i n another room unable to hear the c o n v e r s a t i o n . The c h i l d w i t h cancer wandered i n and out throughout the i n t e r v i e w o c c a s i o n a l l y p a r t i c i p a t i n g i n the interchange and o c c a s i o n -a l l y making demands on h i s o l d e r b r o t h e r . B. Interviews with Second Family The second f a m i l y was composed of mother, female c h i l d age 14 y e a r s , male c h i l d age 12 y e a r s , male f o s t e r c h i l d age 9 y e a r s , male„ f o s t e r c h i l d (brother of the other f o s t e r - 38 -c h i l d ) age 7 y e a r s and male c h i l d w i t h an o n c o l o g y r e l a t e d i l l n e s s age 7 y e a r s . They l i v e d i n an u r b a n a r e a a b o u t 15 m i n u t e s d r i v e f r o m t h e o n c o l o g y c l i n i c . The two f o s t e r c h i l d r e n a t t e n d e d s c h o o l d i r e c t l y a c r o s s t h e s t r e e t f r o m t h e home, t h e i l l c h i l d and t h e 12 y e a r o l d a t t e n d e d a c h u r c h r e l a t e d s c h o o l n e a r b y , and t h e 14 y e a r o l d a t t e n d e d t h e n e a r b y j u n i o r h i g h s c h o o l . The p a r e n t o f t h i s f a m i l y a g r e e d i m m e d i a t e l y t o h a v i n g t h e c h i l d r e n p a r t i c i p a t e , and upon c o n f i r m a t i o n o f t h e c h i l d r e n ' s w i l l i n g n e s s , an a p p o i n t m e n t was s e t up w i t h i n two d a y s . When t h e r e s e a r c h e r a r r i v e d , t h e c h i l d r e n were a l l g a t h e r e d and t h e mother o r g a n i z e d t h e i n t e r v i e w s e t t i n g a r o u n d t h e t a b l e i n an a r e a a d j o i n i n g 'the k i t c h e n . On a s u b s e q u e n t v i s i t t h e r e s e a r c h e r f o u n d t h a t t h i s seemed t o be t h e common p l a c e f o r t h e f a m i l y t o c o n g r e g a t e and f o r c o n -v e r s a t i o n s t o o c c u r w i t h o u t s i d e r s . The c h i l d r e n seemed wary o f s h a r i n g w i t h t h e r e s e a r c h -e r . They r e q u i r e d t i m e t o a s s i m i l a t e i n f o r m a t i o n a b o u t t h e p u r p o s e o f t h e i n t e r v i e w and t h e r o l e s o f p a r t i c i p a n t s . The r e q u i r e m e n t f o r t h i s k i n d o f c l a r i f i c a t i o n i s i n c l u d e d by R i c h (1968) as he d e s c r i b e s e x p e c t a t i o n s and t h e i r i n f l u e n c e on c o m m u n i c a t i o n w i t h c h i l d r e n . C h i l d r e n , b e c a u s e o f t h e i r l i m i t e d e x p e r i e n c e t e n d t o s e e an a d u l t , n o t s i m p l y as a p e r s o n b u t as a p e r s o n w i t h a r o l e a t t a c h e d s u c h as a t e a c h -e r , a p a r e n t , a n u r s e . T h i s means, f o r example, t h a t t h e c h i l d may be more a t home w i t h a t e a c h e r i n a c l a s s r o o m t h a n i n a l i v i n g room. The c h i l d r e n i n t h i s f a m i l y had v i e w e d - 39 -and p a r t i c i p a t e d i n i n t e r v i e w s e t t i n g s b e f o r e with a s o c i a l worker who had been i n v o l v e d i n the placement and ongoing s u p e r v i s i o n o f the two f o s t e r c h i l d r e n . The i n d i v i d u a l b r i n g s t o each experience the sum t o t a l of p r e v i o u s ex-p e r i e n c e s and e x t r a c t s data from c u r r e n t experiences to c o n s t r u c t each new s i t u a t i o n i n such a way as i t makes sense t o him (Schutz 1966). Because the i n t e r v i e w s e t t i n g i s a s o c i a l s e t t i n g i n v o l v i n g i n t e r a c t i o n between human beings ( C i c o u r e l 1964), the i n t e r v i e w e r p l a y s a p a r t i n the way the int e r v i e w e e c o n s t r u c t s the experience of being i n t e r v i e w e d . The i n t e r v i e w e r cannot c o n s t r u c t the experience f o r the in t e r v i e w e e , but must be aware of the way i n which the i n t e r v i e w e r i s c o n s t r u c t i n g the experience. In t h i s i n s t a n c e the c h i l d r e n r e q u i r e d time t o assess the i n t e r v i e w e r , decide what her r o l e was, and decide i f they would share with her and what they would choose t o share. For p a r t of the i n t e r v i e w with t h i s f a m i l y , the c h i l d with cancer was prese n t . When he found the process was l a s t i n g too long he and the youngest s i b l i n g went out t o p l a y . The other s i b l i n g s chose t o stay u n t i l the end of the i n t e r v i e w . The mother was a l s o present f o r a p a r t of the i n t e r v i e w , encouraging the c h i l d r e n t o p a r t i c i p a t e . On reviewing the i n t e r v i e w content w i t h the mother pr e s e n t , and comparing i t t o the content of i n t e r v i e w s done when she was not present, her presence d i d not appear t o i n h i b i t the c h i l d r e n s h a r i n g t h e i r e x p e r i e n c e s . The o l d e s t c h i l d ap-peared t o be the l e a d e r i n the i n f o r m a t i o n g i v i n g . She a l s o - 40 -a p p e a r e d t o be a c t i v e l y t r y i n g t o cope w i t h g r i e v i n g . T h e r e f o r e , i n t h e s e c o n d i n t e r v i e w she was s e e n s e p a r a t e l y . The o t h e r c h i l d r e n wanted t o be t o g e t h e r and a g a i n t h e y wanted t o i n c l u d e t h e i l l c h i l d . T h i s t i m e t h e 12 y e a r o l d boy i n i t i a t e d t h e i n f o r m a t i o n g i v i n g and was much more i n v o l v e d i n s h a r i n g h i s p e r c e p t i o n . F o l l o w i n g e a c h i n t e r v i e w , f i e l d n o t e s were made a b o u t t h e i n t e r v i e w i n g s e t t i n g , e x p e r i e n c e , c o n v e r s a t i o n s w i t h t h e p a r e n t s and so on. T h e s e n o t e s were o f c o n t e x t u a l s i g n i -f i c a n c e i n p l a c i n g t h e i n t e r v i e w and some comments b e i n g made by t h e s u b j e c t s . C. Why A S e c o n d I n t e r v i e w W i t h The Same P o p u l a t i o n Was C o n d u c t e d F o l l o w i n g t h e f i r s t i n t e r v i e w i n e a c h f a m i l y a n a l y s i s and c o d i n g o f t h e d a t a was begun. T h i s i s c o n s i s t e n t w i t h t h e m e t h o d o l o g y b e i n g u s e d (pp. 49-51 o f t h i s r e p o r t ) . The p u r p o s e o f t h e s e c o n d i n t e r v i e w was t o e x p l o r e i n g r e a t e r d e p t h some o f t h e t o p i c s i n t r o d u c e d i n t h e f i r s t i n t e r v i e w , and t o c o l l e c t a d d i t i o n a l i n f o r m a t i o n p e r t i n e n t t o t h e c o n c e p t s w h i c h were e m e r g i n g i n t h e p r o c e s s o f d a t a a n a l y -s i s . Q u a l i t a t i v e m e t h o d o l o g y a l s o a l l o w s f o r t h i s k i n d o f i n t e r v i e w t o o c c u r w i t h a d i f f e r e n t s u b j e c t p o p u l a t i o n ( G l a s e r 1978). However, s i n c e t h i s p o p u l a t i o n had a g r e e d t o t h e a d d i t i o n a l i n t e r v i e w s , and t h e r e s e a r c h e r f e l t o b l i g a t e d t o e x p o s e as few f a m i l i e s as p o s s i b l e t o t h e r e s e a r c h p r o -c e s s a s e c o n d i n t e r v i e w w i t h t h e same p o p u l a t i o n was t h e o p t i o n c h o s e n . - 41 -ANALYSIS OF THE DATA A n a l y s i s o f t h e d a t a i n a q u a l i t a t i v e s t u d y such as t h i s b e g i n s as soon as the r e s e a r c h e r and t h e s u b j e c t make c o n t a c t . A l t h o u g h , t h e d a t a c o l l e c t i o n t o o l was t h e i n t e r -v i e w , t h e i n t e r v i e w d a t a were a n a l y z e d w i t h i n t h e c o n t e x t o f th e s o c i a l e n c o u n t e r ( C i c o u r e l 1964). The d a t a were a n a l y z e d by t h e p r o c e s s o f c o n s t a n t com-p a r a t i v e a n a l y s i s ( G l a s e r and S t r a u s s 1967; G l a s e r 1978; Maxwell and Maxwell 1980). The a n a l y t i c u n i t i n t h i s s t u d y was t h e s i b l i n g ' s p e r c e p t i o n o f a s p e c i f i e d e x p e r i e n c e o r any i n d i c a t o r s o f t h i s c o n c e p t . Each i n t e r v i e w was t r a n s c r i b e d from t h e a u d i o t a p e . The t r a n s c r i p t i o n was s t u d i e d l i n e by l i n e f o l l o w i n g t h e i n s t r u c t i o n s o f G l a s e r (1978) t o c a r r y out open c o d i n g a s k i n g t h e f o l l o w i n g q u e s t i o n s : What i s t h i s d a t a a s t u d y o f ? What c a t e g o r y does t h i s i n c i d e n t i n d i c a t e ? What i s a c t u a l l y happening i n t h e data? What b a s i c s o c i a l - p s y c h o l o g i c a l problem i s b e i n g f a c e d by p a r t i c i p a n t s ? What p r o c e s s i n g o f problems i s b e i n g done by p a r t i c i p a n t s t o make l i f e v i a b l e ? ( G l a s e r 1978, p. 57) Each p i e c e o f d a t a was t r a n s f e r r e d t o a t h r e e i n c h by f i v e i n c h i n d e x c a r d and t h e n a s s i g n e d t h r o u g h a f i l i n g p r o c e s s t o as many c a t e g o r i e s as p o s s i b l e . D u p l i c a t e c a r d s were made so t h a t a s e p a r a t e c a r d c o u l d be f i l e d i n each c a t e g o r y . As i t was f i l e d i t was compared t o o t h e r d a t a i n - 42 -the same category and to data i n oth e r c a t e g o r i e s . G l a s e r (1978) terms t h i s process " f r a c t u r i n g " the data. F r a c t u r i n g the data allows the a n a l y s t t o c o n s i d e r the data a t a con-c e p t u a l l e v e l r a t h e r than becoming embroiled i n the d e t a i l of the experience being r e l a t e d by the s u b j e c t . Notes r e g a r d i n g p o s s i b l e r e l a t i o n s h i p s and other ideas o c c u r r i n g to the a n a l y s t d u r i n g t h i s process were w r i t t e n . A f t e r the i n i t i a l coding and c a t e g o r i z i n g was done f o r the f i r s t i n t e r v i e w , the procedure was repeated f o r subsequent i n t e r -views. As subsequent data were c a t e g o r i z e d and compared some of the o r i g i n a l c a t e g o r i e s were a l t e r e d i n l i g h t o f the new datum being added. C a t e g o r i e s were added, c a t e g o r i e s were d e l e t e d , and some data were r e c a t e g o r i z e d with notes about r e l a t i o n s h i p s and ideas c o n t i n u a l l y being recorded. The process of open coding and c a t e g o r i z i n g i s termed sub-s t a n t i v e coding (Glaser 1978, p. 56). Su b s t a n t i v e coding i s a means of c o n c e p t u a l i z i n g the substance of the area of r e s e a r c h . F o l l o w i n g t h i s procedure, the notes about r e l a t i o n s h i p s and ideas were c a t e g o r i z e d , the data compared and r e c a t e g o r -i z e d . T h i s type of coding i s t h e o r e t i c a l coding (Glaser 1978, p. 72). T h i s coding i n d i c a t e s the r e l a t i o n s h i p be-tween the s u b s t a n t i v e codes i n d i c a t i n g hypotheses which may be i n t e g r a t e d i n t o theory. At t h i s p o i n t , the coding has moved from the s o r t i n g of data t o conceptual s o r t i n g o r the s o r t i n g of i d e a s . As a core v a r i a b l e , or c o n s t r u c t which appears to account f o r the major p o r t i o n of v a r i a t i o n i n - 43 -behavior p a t t e r n begins to emerge, then a l l o t h e r c a t e g o r i e s and p r o p e r t i e s are s o r t e d as they r e l a t e t o the core v a r -i a b l e . In t h i s study, a c o n s t r u c t began to emerge at t h i s time. T h i s c o n s t r u c t can o n l y be c o n s i d e r e d an hypotheses. I t i s not a f a c t . T h i s data a n a l y s i s process can be summarized i n the words of G l a s e r (1978, p. 55). I t i n v o l v e s " f r a c t u r i n g the data, then c o n c e p t u a l l y grouping i t i n t o codes t h a t then become the theory which e x p l a i n s what i s happening i n the d a t a " . SUMMARY T h i s chapter has d e s c r i b e d the procedure f o l l o w e d to a r r i v e at a c o n c e p t u a l i z a t i o n of the s i b l i n g ' s p e r c e p t i o n of day to day l i v i n g when a c h i l d i n the f a m i l y i s being t r e a t e d f o r cancer. In the next chapter, the nature of i n f o r m a t i o n a v a i l a b l e to the s i b l i n g which i s i n t e g r a l to h i s / h e r p e r c e p t i o n and the c o n c e p t u a l i z a t i o n of t h a t p e r -c e p t i o n w i l l be presented. - 44 -CHAPTER IV: THE CONCEPTUALIZATION OF THE DATA INTRODUCTION The process used t o c o n c e p t u a l i z e the s i b l i n g ' s percep-t i o n of day to day l i v i n g when another c h i l d i n the f a m i l y i s being t r e a t e d f o r cancer as d e s c r i b e d i n Chapter I I I i n v o l v e d i n t e r v i e w i n g s i b l i n g s , comparing and c a t e g o r i z i n g the data f o r the purpose of c o n s i d e r i n g them at the concep-t u a l l e v e l , i d e n t i f y i n g concepts, and f i n a l l y l o o k i n g f o r r e l a t i o n s h i p s between the concepts. T h i s chapter w i l l p r e s -ent the data at the conceptual l e v e l . The concepts and t h e i r r e l a t i o n s h i p s as d e r i v e d from the data w i l l be de-s c r i b e d . P r e p a r a t o r y t o t h i s a summary of the nature and sources of i n f o r m a t i o n a v a i l a b l e t o the s i b l i n g s about the i l l n e s s i s presented. Two premises underly the p r e s e n t a t i o n of the data: 1. " A l l s e t t i n g s and s u b j e c t s are s i m i l a r while r e t a i n i n g t h e i r uniqueness" thus general s o c i a l p r ocesses can be s t u d i e d i n any s i n g l e s e t t i n g or through any s i n g l e s u b j e c t . "At the same time some processes t h a t appear i n b o l d r e l i e f under some circumstances appear o n l y f a i n t l y under o t h e r s " (Bogdan and T a y l o r 1975, p. 12). 2. The process of f r a c t u r i n g the data then concept-u a l l y grouping i t i n t o codes r e s u l t s i n a theory which e x p l a i n s what i s happening i n the data (G l a s e r 1978). These two premises allow the r e s e a r c h e r to pr e s e n t the data from m u l t i p l e sources i n a combined form r a t h e r than as i n d i v i d u a l accountings. Verbatim accounts of i n t e r a c t i o n s - 45 -are i n c l u d e d to give the reader access to the data upon which the r e s e a r c h e r ' s c o n c e p t u a l i z a t i o n s are based. THE NATURE AND SOURCES OF INFORMATION AVAILABLE TO THE SIBLINGS In Chapter I p e r c e p t i o n was d e f i n e d f o r the purposes of t h i s study as the process by which we o b t a i n , transform, organize and s t r u c t u r e i n f o r m a t i o n a r i s i n g from the world i n sense data or memory, and respond to t h a t data i n a s e l e c -t i v e and d i s c r i m i n a t i v e manner (p. 8 ) . The i n f o r m a t i o n a v a i l a b l e t o the s i b l i n g s about the i l l n e s s and t h e i r i n t e r -p r e t a t i o n of t h a t i n f o r m a t i o n thus becomes a component i n t h e i r p e r c e p t i o n s . In t h i s s e c t i o n segments of conversa-t i o n s with the s i b l i n g s are used to i l l u s t r a t e the nature and sources of i n f o r m a t i o n about the i l l n e s s experience which are a v a i l a b l e to the s i b l i n g s . S i b l i n g s p a r t i c i p a t i n g i n c o n v e r s a t i o n s have been i d e n t i f i e d as "C", the r e s e a r c h e r as "R". I f more than one s i b l i n g p a r t i c i p a t e d i n the con-v e r s a t i o n t h i s has been i n d i c a t e d by d e s i g n a t i n g the speaker as CI, C2 and so on i n the order i n which they f i r s t spoke i n the c o n v e r s a t i o n being r e p o r t e d . A. The S e r i o u s n e s s of the I l l n e s s A n a l y s i s of the data i n d i c a t e d t h a t a l l of the c h i l d r e n i n the study p o p u l a t i o n knew the i l l c h i l d ' s d i a g n o s i s and t h a t the i l l n e s s was p o t e n t i a l l y very s e r i o u s . The p o s s i -b i l i t y of a f a t a l outcome was not a l l u d e d to by the r e -- 4 6 -searcher, however s e v e r a l c h i l d r e n d i d mention death e i t h e r d i r e c t l y o r i n d i r e c t l y as a p o s s i b i l i t y . The mother i n one of the f a m i l i e s r e l a t e d t h a t the se r i o u s n e s s of the i l l n e s s had been d i s c u s s e d with the c h i l d r e n but she was not sure t h a t the two youngest c h i l d r e n r e a l l y a p p r e c i a t e d the i m p l i c a t i o n s . The r e s e a r c h e r had the impression t h a t the p o s s i b i l i t y of death had not been d i s -cussed with those two c h i l d r e n . The s i b l i n g s o f t h a t f a m i l y r e f e r r e d to a death of another c h i l d t h a t took p l a c e d u r i n g the i n i t i a l h o s p i t a l i z a t i o n of t h e i r b r o t h e r i n d i c a t i n g t o the r e s e a r c h e r t h a t death was something they had thought about. C l : The sad t h i n g was l i k e he shared h i s room with f o u r other people - f o u r other l i t t l e k i d s and one of the l i t t l e guys d i e d . But I don't t h i n k he ever found out about i t . We knew about i t . C2: He did? I d i d n ' t even know. C3: Yeah, you know down at the end of the h a l l where i t s a i d no unauthorized personnel beyond t h i s p l a c e . The l a s t room. The above interchange i s most l i k e l y an example of a s i b l i n g g a i n i n g another p i e c e o f i n f o r m a t i o n t o add to the r e p e r -t o i r e of knowledge. The c o n v e r s a t i o n continued as f o l l o w s : C2: The o t h e r l i t t l e k i d s were r e a l l y cute, r e a l l y n i c e a c t u a l l y . C3: Yeah we met some k i d s who were r e a l l y c o o l , k i n d of n i c e . Some of them are b a l d . C l : Yeah, i t s j u s t a matter of r e a l l y r e l a t i n g t o them you know. I t s hard t o t a l k . You see a b a l d person on the s t r e e t and you can't t a l k t o him you - 47 -know. You f e e l out of p l a c e . But i f you overcome t h a t everyone's a f r i e n d p r e t t y w e l l . C2: Except mean people. At t h i s p o i n t C2 moved o u t s i d e of the t a l k i n g c i r c l e . The r e s e a r c h e r i n t r o d u c e d a new t o p i c and she moved back i n . The t o p i c of death was not pursued nor d i d i t come up again with the two younger c h i l d r e n i n t h i s s i b l i n g sub-group. The s i b l i n g s i n the o t h e r f a m i l y had d i s c u s s e d the p o s s i b i l i t y of the i l l c h i l d ' s death with the mother and spoke about death i n d i r e c t r e l a t i o n s h i p to t h e i r b r o t h e r d u r i n g the i n t e r v i e w . T h i s statement was made i n the p r e -sence of the i l l c h i l d and the mother. The s i b l i n g making the statement was v i s i b l y upset and the o t h e r s looked sad but i t appeared to the r e s e a r c h e r t h a t t h i s k i n d of expres-s i o n of f e e l i n g was s a n c t i o n e d i n t h i s f a m i l y . C: Whenever I hear "leukemia" I always t h i n k about and t h i n g s l i k e t h a t . Sometimes when I look i n the newspaper t h a t l i s t s s o r t of where the dead peoples are sometimes I hope he never gets i n -i n - i n the paper where people t h a t d i e - I hope he never gets t h e r e . That's how I f e e l about i t . A more common r e f e r r a l t o the i l l c h i l d ' s m o r t a l i t y was a statement made by one of the s i b l i n g s . C: He 1s ok now. He'11 make i t . B. M e d i c a t i o n Taking The s i b l i n g s knew t h e i r b r o t h e r s r e c e i v e d medication. The c o n v e r s a t i o n s i n d i c a t e t h e i r knowledge o f d e t a i l s o f t h i s as hazy. - 48 -C: He has to take a l l those shots and p i l l s . A l l those awful p i l l s . C l : On F r i d a y he used t o take s i x of those l i t t l e y e l l o w ones. C 2 : He took them a l l a t once. C l : He took three a t a time. C 2 : Four at a time. C: We're never around when he takes h i s p i l l s cause he always hates when anybody's around. C: Every once i n a w h i l e . I t h i n k Monday. Mostly Monday and Tuesdays. R: Does he take p i l l s on o t h e r days? C: I don't know. I don't see him. Some of the s i b l i n g s knew the names of some of the drugs and one knew how they t a s t e d . C l : Once he made me b i t e i n one of h i s p i l l s . C 2 : L i k e i t was ok t h a t we b i t . I t wouldn't h u r t us. C l : My b r o t h e r once, I t h i n k i t was prednisone or something he s a i d "I dare you to b i t e i n t o one o f those". And I had t o . I t was y i c k . I hate i t . I had to take about t en cups of milk. The s i b l i n g s knew the drugs caused some unpleasant s i d e -- 49 -e f f e c t s . C: And when he's t a k i n g h i s prednisone f o r a week he's i n a r e a l l y bad mood. You don't get i n h i s way then. R: Are h i s sore f e e t p a r t of leukemia or i s t h a t from being h i t by the van? C: I t h i n k i t s because of h i s medicine mostly. C: i s j u s t s i c k on those days. L i k e he j u s t s l e e p s i t s o r t of away and he's ok the r e s t of the week. Some of the s i d e - e f f e c t s were hard f o r the s i b l i n g s to get used t o . C: When he d i d n ' t have any h a i r I c o u l d n ' t get used to i t . C. D i a g n o s t i c and Treatment Procedures The s i b l i n g s had a l l witnessed some p a r t of the d i a g -n o s t i c or treatment procedure. The language they used and the d e s c r i p t i o n s o f f e r e d suggest t h a t h e a l t h p r o f e s s i o n a l s were not i n v o l v e d i n i n t e r p r e t i n g what was happening o r i n h e l p i n g them t o understand the experience. T h e i r d e s c r i p t i o n s of treatment procedures witnessed i n c l u d e d such t h i n g s as: - 50 -C: I saw having a needle i n h i s bum. C: I remember when they stuck t h i s s i l v e r t h i n g under h i s tongue. R: So tommorrow he j u s t goes f o r a r e g u l a r l i t t l e check-up? C: Uh huh. R: What happens when he goes f o r one of those? C l : He j u s t gets a couple of shots. C 2 : And, uh, they take h i s weight and t h i n g s . A l l t h a t , you know. R: So those are a l l the kinds of t h i n g s t h a t happen to him and he doesn't mind? C l : Yeah. And h i s l . p . k i n d of t h i n g . When obs e r v i n g treatments the c h i l d r e n d i d not always see what a t r a i n e d eye would see. C: When he was i n the h o s p i t a l l a s t year and he d i d n ' t have a l l those wires and t h i n g s we'd get him i n the wheelchair and we'd push him. The wires and t h i n g s presumably r e f e r t o the intravenous t u b i n g . Some of the c h i l d r e n ' s d e s c r i p t i o n s of what they saw r e f l e c t emotional involvement i n the experience i n c l u d i n g psychosomatic symptoms, sadness, f e a r , empathy and sympathy. - 51 -I s t a r t e d t o f e e l s i c k . R C R C R C R C What d i d you see? I saw having a needle i n h i s bum. Did you see them put i t i n ? Yeah. What d i d you t h i n k about i t ? Sad. Sad?. Yeah I t ' s k i n d of hard to watch i t . I wouldn't be a b l e to do i t . I don't r e a l l y l i k e watching i t . I guess he j u s t l i k e s me being t h e r e . C: Whenever I go t o the h o s p i t a l sometimes and he screams when he gets a needle t h a t makes me f e e l l i k e c r y i n g when he screams and t h a t . C: You can't do anything you know. You can h o l d h i s hand but he's r e a l l y nervous and he pushes i t away. You know you can't do anything. I t ' s s c a r y . . . . with the s p i n a l tap or the bone marrow l y i n g on t h a t bed and the nurses are a l l swarming around him. And I t h i n k t h a t ' s one of the t h i n g s t h a t r e a l l y scares him. L i k e t h e r e ' s 10 people a l l l o o k i n g over him. He can't look anywhere. And we t r y t o assure him but you know i t ' s k i n d of - not r e a l l y assurance i t j u s t puts more pressure on him. - 52 -The s i b l i n g s r e a c t e d to the h o s p i t a l i t s e l f . C l : The h o s p i t a l atmosphere i s p r e t t y n i c e but some-times i t ' s so dismal. C2: And everybody i s t a l k i n g and e v e r y t h i n g . C l : I t ' s a l l grey and e v e r y t h i n g . C3: Whenever you go i n t o a b u i l d i n g l i k e a h o s p i t a l i t ' s got a d i f f e r e n t k i n d of smell and e v e r y t h i n g . The e x p r e s s i o n "and e v e r y t h i n g " appears to imply a l a r g e r experience than the c h i l d i s able to a r t i c u l a t e (Foss and Hakes 1978). THE CONCEPTS AND THEIR INDICATORS The f i r s t concept to emerge from the data was t h a t of s p e c i a l s t a t u s f o r the i l l c h i l d . T h i s concept and the i n d i c a t o r s s u p p o r t i n g i t w i l l now be d e s c r i b e d . A. S p e c i a l Status For The 111 C h i l d . 1. C r e a t i o n of S p e c i a l Status of the 111 C h i l d by the Parent. As the s u b s t a n t i v e coding progressed, the data i n d i -c ated t h a t the s i b l i n g s ' p e r c e i v e d t h a t the c h i l d with cancer was t r e a t e d d i f f e r e n t l y than the other c h i l d r e n by the parent. T h i s had begun with the i n i t i a l d i a g n o s i s . The i l l n e s s t r a j e c t o r y f o r the c h i l d r e n with the on-cology r e l a t e d i l l n e s s i n both of the f a m i l i e s comprising the study p o p u l a t i o n began with an acute i l l n e s s r e q u i r i n g h o s p i t a l i z a t i o n which r e s u l t e d i n d i s r u p t i o n of normal - 53 -i n d i v i d u a l and f a m i l y a c t i v i t i e s . H o s p i t a l i z a t i o n of a f a m i l y member thus became one of the f i r s t v a r i a b l e s asso-c i a t e d w i t h the i l l n e s s t o which the s i b l i n g s were r e q u i r e d to r e a c t . T h i s p e r i o d of time was c h a r a c t e r i z e d by the p a r e n t ( s ) spending long hours at the h o s p i t a l with the i l l c h i l d . The c h i l d r e n , r e t r o s p e c t i v e l y , r e f e r r e d t o the absence of the p a r e n t ( s ) from the home i n a matter of f a c t way. As d e s c r i b e d by the c h i l d r e n of one f a m i l y : C: My mom and dad - e i t h e r of them was u s u a l l y always at the h o s p i t a l . Sometimes we'd have to stay a t the h o s p i t a l u n t i l about 11 o'clock and then my mom would d r i v e us home and s t u f f . o C: Yah, every n i g h t my dad or mom stayed there f o r the n i g h t . W i t h i n the f a m i l y subsystem t h i s c r e a t e d a s p e c i a l s t a t u s f o r the i l l c h i l d . He was r e c e i v i n g more than h i s usual share of p a r e n t a l time and a t t e n t i o n . At the same time, other c h i l d r e n i n the f a m i l y were r e q u i r e d to give up t h e i r usual a c t i v i t i e s to a l s o spend more time concerned with the i l l c h i l d . When d i s c u s s i n g the i n t e n t i o n to p a r t i -c i p a t e i n an o r g a n i z e d s p o r t one c h i l d s a i d with r e f e r e n c e to attendance at games: C: I'd get to some. Sometimes I'd get a r i d e with someone but most of the time I'd miss i t . . . . I t was k i n d of a waste of money to j o i n i t but we d i d n ' t know he was going to get s i c k . - 54 -When the c h i l d came home from the h o s p i t a l , the s i b -l i n g s and the p a r e n t ( s ) continued t o support the concept o f s p e c i a l s t a t u s f o r the i l l c h i l d w i t h i n the s i b l i n g sub-system. T h i s support i s r e f l e c t e d i n such statements w i t h r e f e r e n c e t o the i l l c h i l d as: C: He always gets h i s way. He gets t r e a t s . C: He'd get i n t r o u b l e but I don't t h i n k he'd end up paying. C: I t ' s because my mom gi v e s him s p e c i a l a t t e n t i o n you know. The s p e c i a l a t t e n t i o n of one parent was r e f l e c t e d i n the concern f o r the general h e a l t h o f the i l l c h i l d and the ways i n which the parent attempted t o see t h a t h i s n u t r i -t i o n a l i n t a k e was adequate. The s i b l i n g s saw t h i s concern demonstrated as f o l l o w s : C: A while ago he was hooked on mar shmal lows and a f t e r the h o s p i t a l my dad made the mistake of k i n d of g e t t i n g him the marshmallows. You know he's k i n d of i n a bad mood and you might as w e l l cheer him up. We got him o f f t h a t h a b i t . He'd a l s o get a b i g c h o c o l a t e bar. So now you know a f t e r the h o s p i t a l my dad b r i n g s him to Kentucky F r i e d Chicken f o r some c h i p s and pop and e v e r y t h i n g t o get him something good t o eat. - 5 5 -C: He gets b e t t e r yogurt - t h i n g s l i k e t h a t . C: My mom went down to the s t o r e and bought some Super Socco, c h o c o l a t e milk and some grapes t h a t I had t o drop i n t o him. C: He gets t r e a t s l i k e t h a t . E x t r a d r i n k s , my mom d i d n ' t u s u a l l y buy c h o c o l a t e milk, pop and s t u f f . E n s u r i n g adequate r e s t was a l s o a concern. The s i b -l i n g s ' statements r e f l e c t e d how they saw the parents handled t h a t problem area. C: I f he's s l e e p i n g my mom j u s t l e t s him s l e e p . C: He sle e p s a l o t . R: What do you do? C: Play o u t s i d e - out of the way. From the s i b l i n g s p o i n t of view, the i l l c h i l d was d e a l t with i n a s p e c i a l way. C r e a t i o n o f t h i s s p e c i a l s t a t u s by the parents was not only r e l a t e d t o concerns about p a r t i c u l a r i l l n e s s v a r i a b l e s . I t a l s o o c c u r r e d with regard t o ac c e p t a b l e behavior o f the i l l c h i l d and h i s i n t e r a c t i o n s with h i s s i b l i n g s . S i b l i n g s r e p o r t e d : - 56 -C: I u s u a l l y have to put away h i s c l o t h e s - yesterday Mom made him do i t - he j u s t s a t there f o r awhile. C: He screams a l o t too. R: Do you mean you have to give i n to him a l l the time? C: Yeah - not a l l the time but most of the time. C: L i k e u s u a l l y I don't l i k e l e t t i n g him get h i s way. I don't l i k e i t and then i f I don't I u s u a l l y get i n t r o u b l e cause he gets mad and screams and s t u f f . The words of one s i b l i n g i n d i c a t e d how he saw t h i s behavior as beginning e a r l y i n the i l l n e s s t r a j e c t o r y and being r e l a t e d t o the s p e c i a l s t a t u s accorded the i l l c h i l d because of h o s p i t a l i z a t i o n . C: He's l e a r n i n g t h a t he has a l o t of a u t h o r i t y because you see when he was i n the h o s p i t a l and everyone takes s p e c i a l a t t e n t i o n - g i v e him spe-c i a l a t t e n t i o n . The r e l a t i o n s h i p appeared to be c i r c u l a r i n t h a t the parent accorded the i l l c h i l d s p e c i a l s t a t u s and the i l l c h i l d i n t u r n demanded s p e c i a l treatment r e q u i r i n g the parent to respond. 2 . C o n f e r r i n g of S p e c i a l S tatus on the 1 1 1 C h i l d by the S i b l i n g s Continuous comparing of data and d e r i v i n g of substan-t i v e codes i n d i c a t e d t h a t g r a n t i n g s p e c i a l s t a t u s w i t h i n the - 57 -f a m i l y system t o the i l l c h i l d was done not only by the parent, but a l s o by the s i b l i n g s . In one i n c i d e n t one of the s i b l i n g s r e l a t e d how he would o f f e r t o pay the i l l c h i l d t o eat a bowl of s a l a d , o r go to bed. He d i d not do t h i s w i t h o t h e r s i b l i n g s i n the f a m i l y as i t d i d not matter so much i f they ate p r o p e r l y or got enough s l e e p . T h i s be-h a v i o r on the p a r t of the s i b l i n g was r e i n f o r c e d by the parent when the s i b l i n g had no money to pay the debt and the parent p a i d i t . S i b l i n g s appeared t o c o n f e r s p e c i a l s t a t u s on the i l l c h i l d because they f e l t t h a t was something t a n g i b l e o r con c r e t e they c o u l d do f o r the i l l c h i l d . To r e f u s e a request of the i l l c h i l d was d i f f i c u l t . C: I f I want t o go to St a n l e y Park, he says i t ' s not f a i r . Can I come? And I can't say no so I u s u a l -l y take him. C: I u s u a l l y take him out t o the movies and t r e a t him. That's how I t r y to keep him happy. S i b l i n g s r e f e r r e d to the m o r t a l i t y of the i l l c h i l d i n r a t i o n a l i z i n g why they c o n f e r r e d s p e c i a l s t a t u s : C: To make h i s l i f e b e t t e r . C: He hasn't got long on t h i s e a r t h . - 58 -C: To make me f o r g e t , f o r g e t about him, you know. C: When we have a c o l d we have to stay away from him. L i k e one of the b i g t h i n g s i s Saturday morning car t o o n s . And l i k e you walk i n there and i f you have a c o l d l i k e you do a l o t of times d u r i n g the l a s t week of s c h o o l . L i k e i f he's s i t t i n g here you k i n d of have to go over to the edge. The f o l l o w i n g interchange i n d i c a t e s one of the s i b l i n g s was much more t o l e r a n t of the behavior of the i l l c h i l d w i t h i n the f a m i l y , than o f a c h i l d of another f a m i l y who had the same d i a g n o s i s . T h i s s i b l i n g was not prepared to c o n f e r s p e c i a l s t a t u s on a l l c h i l d r e n w i t h an oncology r e l a t e d i l l n e s s . R: You f e e l t h a t she's r e a l l y s p o i l e d and hard t o get along with? C: I t h i n k she's more s p o i l e d than . 's not t h a t bad. L i k e I t h i n k she's too much s p o i l t . She always wants her way when I'm here. And i f she doesn't get her way she s t a r t s s t i c k i n g her tongue out a t me and s t u f f l i k e t h a t . R: What happens when doesn't do what you want him to do? C: He j u s t s l a p s me on the l e g or something or he j u s t s t a r t s screaming but he doesn't h i t or any-t h i n g . J u s t s i t s t here and c r i e s . That's what he does. He runs i n h i s room and shuts the door. R: He shuts the door? C: And l o c k s i t . He doesn't always. He j u s t c l o s e s i t . Sometimes he l o c k s i t when you t e l l him to come out. R: He won't come? C: I f I get the door open he throws something a t me. He t e l l s me t o get out. That's on l y sometimes. - 59 -He h a r d l y ever l o s e s h i s temper. He's good t o get along with I t h i n k . Not a l l the time but some-time . 3. S i b l i n g s ' Requirement f o r O u t s i d e r s to Confer S p e c i a l Status on 111 C h i l d The d a t a i n d i c a t e d t h a t s i b l i n g s wanted o u t s i d e r s t o c o n f e r s p e c i a l s t a t u s on the i l l c h i l d . T h i s was expressed as a d i r e c t requirement i n the f o l l o w i n g statement. C: He misses (school) sometimes when people have ch i c k e n pox. A l o t of people are t o t a l l y s t u p i d . Most of the people'd phone up my Mom and say w e l l - ah - somebody's got chi c k e n pox. But some people'd send t h e i r c h i l d r e n to school and then everybody gets i t . The requirement was a l s o demonstrated i n the ways i n which the s i b l i n g sought to p r o t e c t the i l l c h i l d . R: Do your f r i e n d s know about ? C: Yeah. I t o l d them i f they touch him I'd k i l l them. 4. M a i n t a i n i n g S p e c i a l S tatus of the 111 C h i l d The data i n d i c a t e d t h a t over time, the s i b l i n g s no longer viewed as unusual the s p e c i a l s t a t u s o f the i l l c h i l d w i t h i n the f a m i l y . Rather, they began t o i n c o r p o r a t e the c r e a t i o n and maintenance of s p e c i a l s t a t u s f o r the i l l c h i l d i n t o t h e i r d a i l y a c t i v i t i e s and r e l a t i o n s h i p s . When t h i s happened, the process appeared not to be an i r r i t a n t i n s i b l i n g r e l a t i o n s h i p s . During the second i n t e r v i e w , s i b -l i n g s o f one f a m i l y were d i s c u s s i n g the e a t i n g h a b i t s of the - 60 -i l l c h i l d . The d i s c u s s i o n c e ntered around the i l l c h i l d r e f u s i n g food which was served t o the whole f a m i l y . C: He says, "No I don't want t h a t . " So we make him something d i f f e r e n t . R: What do you t h i n k about t h a t ? C: I don't c a r e . One of the s i b l i n g s summed up the new r e l a t i o n s h i p with the i l l c h i l d i n t h i s way: C: You k i n d of have t o t r e a t him as you used t o t r e a t him but a l s o keep an eye out f o r him. L i k e you give him s p e c i a l a t t e n t i o n but not so he r e a l l y knows, you know. The s i b l i n g s appeared t o accept the new requirement t o t r e a t the i l l c h i l d i n a s p e c i a l way. R: Do you t h i n k i f he hadn't been s i c k you would have given i n t o him t h a t way? C: No, I don't t h i n k so. I t j u s t turned out he was s i c k and i t ' s j u s t the way i t went I guess. S p e c i a l s t a t u s f o r the i l l c h i l d came to be viewed by the s i b l i n g as normal. Through the process of c o n f e r r i n g s p e c i a l s t a t u s on the i l l c h i l d , and then a c t i n g t o i n c o r -porate the c r e a t i o n and maintenance of the s p e c i a l s t a t u s i n t o t h e i r d a i l y a c t i v i t i e s and r e l a t i o n s h i p s , the s i b l i n g s seemed to be c o n s t r u c t i n g a new s u b j e c t i v e n o r m a l i t y . A NEW NORMALITY At t h i s p o i n t , a second concept appeared t o be emerging from the data, t h a t of a new n o r m a l i t y . The i n d i c a t o r s o f t h i s concept w i l l now be d e s c r i b e d . - 61 -1. Changes i n R e s p o n s i b i l i t y A p a r t of the s i b l i n g s * p e r c e p t i o n of l i v i n g i n a f a m i l y where a c h i l d was being t r e a t e d f o r cancer i n c l u d e d changes i n t h e i r r e s p o n s i b i l i t i e s . The s i b l i n g s i d e n t i f i e d being r e s p o n s i b l e as being r e l a t e d t o the i l l n e s s exper-i e n c e . R: Do you f e e l 's i l l n e s s has made a d i f f e r e n c e i n your l i v e s ? C l : Yeah. We're more r e s p o n s i b l e . C2: A l o t of my f r i e n d s are more s p o i l t . We had t o get our own s t u f f . We have to earn and work. L i k e we have to b a b y - s i t and s t u f f . Not a l l my f r i e n d s but some. In one f a m i l y s i b l i n g s r e l a t e d i n c r e a s e d r e s p o n s i b i l i t y f o r household chores t h a t began while the i l l c h i l d was i n h o s p i t a l and continued t o the p r e s e n t . R: Is t h a t when you l e a r n t t o cook? C l : Yeah. We d i d n ' t want to eat t h a t ( r e f e r r i n g t o a c a s s e r o l e brought i n by a neig h b o r ) . C2: I'm s t i l l a p r e t t y good cook. I make your break-f a s t every morning. Some of the i n c r e a s e i n assumed f u n c t i o n s r e l a t e d to c a r i n g f o r the i l l c h i l d . C: She has to make h i s bed everyday. Put away h i s c l o t h e s . The above comments were made very matter o f f a c t l y w i t h no obvious i n d i c a t i o n of annoyance on the p a r t of the s i b -l i n g s . - 62 -One of the i l l c h i l d r e n r e q u i r e d h i s o l d e s t s i b l i n g t o go with him to the c l i n i c when he was having bone marrow a s p i r a t i o n s done. R: You made him go wit h you? I l l C h i l d : Yah. R: What d i d he do f o r you? I l l C h i l d : J u s t s a t and watched. R: What d i d you do? ( D i r e c t e d a t the s i b l i n g ) C: J u s t s a t and watched. I don't know he j u s t l i k e s me being t h e r e . Somebody s t a r i n g a t him. R: Can you h o l d h i s hand or anything? C: My Dad does. T h i s s i b l i n g had been accompanying h i s b r o t h e r t o the c l i n i c appointments from e a r l y i n the i l l n e s s experience. When asked i f he went t o a l l of the c l i n i c appointments he s a i d : C: I go t o some, don't go t o some. J u s t p l a y i t by ear I guess. I go i f we've had a f i g h t . During the f i r s t i n t e r v i e w t h i s s i b l i n g d e s c r i b e d the h e l p -l e s s f e e l i n g he had when bone marrow a s p i r a t i o n s were being done. In the second i n t e r v i e w the i n v e s t i g a t o r had the impression t h a t the experience was now much l e s s t raumatic f o r the s i b l i n g . He s a i d : C: I t ' s k i n d of hard watching i t . I wouldn't be able to do i t . I guess he j u s t l i k e s me being t h e r e . - 63 -Assuming some f u n c t i o n s normally a s s o c i a t e d with pa-r e n t s such as making b r e a k f a s t every morning f o r other c h i l d r e n i n the f a m i l y , and accompanying the i l l c h i l d to the c l i n i c became a p a r t of the new n o r m a l i t y f o r the s i b -l i n g s i n t h i s f a m i l y . 2. Concerns About the 111 C h i l d The s i b l i n g s i n d i c a t e d concern about the i l l c h i l d ' s n u t r i t i o n a l s t a t u s , requirement f o r r e s t , and p r o t e c t i o n from i n f e c t i o n . Whereas these are common p a r e n t a l concerns i t would appear t o be unusual f o r s i b l i n g s t o f e e l respon-s i b l e f o r seeing t h a t these requirements are met (Bank and Kahn 1982) . The s i b l i n g ' s concerns are i n d i c a t e d i n the f o l l o w i n g q u o t a t i o n s : C: I say to him, "You b e t t e r eat or e l s e y o u ' l l get i n t r o u b l e . " C: Sometimes I pay him 5 0* f o r each bowl of s a l a d he e a t s . I t ' s the only way. C: We have to stay away from him. L i k e one of the b i g t h i n g s i s Saturday morning cartoons and l i k e you walk i n t h e r e and i f you have a c o l d l i k e you do a l o t of times, l i k e d u r i n g the l a s t week of school l i k e i f he's s i t t i n g here, you k i n d of have t o go over to the edge. C l : A l s o at dinner we had ( u n d e c i p h e r a b l e ) . He d i d n ' t l i k e i t so I made him a cheese sandwich and my mom - 64 -was going to make him something e l s e . L i k e you have to keep him h e a l t h y . I t does a f f e c t him. L i k e us, i f we get s i c k , we stay i n bed f o r a couple o f days but f o r him i t can be a l i t t l e more s e r i o u s . L i k e i f one of us was t o get c h i c k e n pox I t h i n k we've a l l had i t r i g h t ? Yea. Well we would have to move out. C: You k i n d of have to t r e a t him as you used t o t r e a t him but a l s o j u s t keep an eye out f o r him. L i k e g i v e him s p e c i a l a t t e n t i o n but not so he r e a l l y knows you know l i k e , oh you can stay up r e a l l y l a t e t o n i g h t i s not r e a l l y going to h e l p him. C2: Yeah then h e ' l l be r e a l l y s l e e p y and won't be able to get up. C3: I f he's going to keep s l e e p i n g my Mom j u s t l e t s him s l e e p . R: When s l e e p s i n you don't mind? CI: No. I t ' s a l s o b e t t e r t h a t he goes to the school c l o s e r . I f need be my Mom can j u s t whip over th e r e and they can b r i n g him home. The s i b l i n g s were concerned about other aspects of the i l l c h i l d ' s general h e a l t h s t a t e . One of the s i b l i n g s asked the i l l c h i l d t o g i v e some of h i s gum t o h i s s i s t e r . The i l l c h i l d responded: IC: I need them. C: What f o r ? So you can get a couple more c a v i t i e s ? The ensuing c o n v e r s a t i o n demonstrates another f a c e t of concern about general h e a l t h . C: I t ' s s t i l l a b i g r e s p o n s i b i l i t y to worry about him. When he goes out he has to wear two sweaters and s t u f f . - 65 -R: Does he l i s t e n t o you when you t e l l him he has t o wear two sweaters? C: Yeah, he u s u a l l y l i s t e n s . When he doesn't we have one of our o c c a s i o n a l l i t t l e f i g h t s . 3. S t r e s s A s s o c i a t e d with I l l n e s s and Treatment V a r i a b l e s When the c h i l d was a c u t e l y i l l s i b l i n g s ' thoughts were o f t e n on t h a t c h i l d and h i s predicament. I t was an uncom-f o r t a b l e time. S a i d one of the s i b l i n g s : That's the time I d i d n ' t l i k e . I had my mind too much on . To reduce the s t r e s s of the concomitants of the i l l -ness, the treatments, the h o s p i t a l i z a t i o n s , s i b l i n g s used a v a r i e t y of means. One of these i n v o l v e d reducing the autho-r i t y of the h o s p i t a l and c l i n i c through p l a y . The s i b l i n g i n the f o l l o w i n g c o n v e r s a t i o n d e s c r i b e d a v i s i t to the c l i n i c . A c t u a l l y he's p r e t t y fun a t the h o s p i t a l . Except when he has to get h i s bone marrows. When he's on l . p . or when he's j u s t g e t t i n g h i s shots he's ok. We p l a y soccer a f t e r i n s i d e . We sneak j e l l y beans and s t u f f you know. Watch T.V. E v e n t u a l l y t h i s use of p l a y worked t o reduce the s t r e s s i n v o l v e d with bone marrow a s p i r a t i o n s as was e x e m p l i f i e d i n t h i s c o n v e r s a t i o n from a l a t e r i n t e r v i e w : - 66 -R: I hear you went with when he had a bone marrow. C: Yeah. I had a l o t of fun a f t e r . We snuck up-s t a i r s to the k i t c h e n and s t o l e a bunch of s t u f f . We d i d n ' t r e a l l y s t e a l i t - j u s t k i n d of borrowed i t . We each had a couple of i c e creams and pop-s i c l e s and s t u f f and j e l l o s . Got j e l l y - b e a n -freaked-out. Some s i b l i n g s were not s u c c e s s f u l i n reducing the d i s t r e s s a s s o c i a t e d with being present at treatment pro-cedures. One of the s i b l i n g s d e s c r i b e d h i s r e a c t i o n to being present d u r i n g a s e s s i o n . C: I s t a r t e d to f e e l s i c k . R: What d i d you see? C: I saw a whole bunch of blood going i n t o a tube. Another s i b l i n g i n c l u d e d a d e s c r i p t i o n of the room i n h i s r e a c t i o n to being present: T h i s l i t t l e room i s where always goes to get needles. I t ' s white and he gets treatments and he s t a r t s c r y i n g . W e l l , I would c r y too. S i b l i n g s used l a u g h t e r t o reduce s t r e s s a s s o c i a t e d with the d i s c u s s i o n of i l l n e s s v a r i a b l e s . S i b l i n g s demonstrated t h i s when l a u g h t e r accompanied d e s c r i p t i o n s of unpleasant experiences the i l l c h i l d was undergoing. C: I probably wouldn't be able t o take i t but he goes i n and f i g h t s i t out. (Laughter) He screams a - 67 -l o t though. (More laughter) C: He has to take blood t e s t s and t h i n g s . Eek! (Followed by laughter) C: (Regarding t a k i n g p i l l s ) They t r i e d t o g r i n d them up and mix them with i c e cream. But he c o u l d s t i l l t a s t e them. But he's got used t o i t I guess. Anyway, you check to see i f he's taken them. (Laughter) S i b l i n g s expressed t h a t v e r b a l i z a t i o n with the pa-r e n t (s) was h e l p f u l i n understanding the i l l n e s s of t h e i r b r o t h e r . In a d i s c u s s i o n about t h i s t o p i c s i b l i n g s r e -v e a l e d : C l : I f you don't know what's happening and e v e r y t h i n g you get confused. R: When do you get confused? C2: Well l i k e i f you don't know what's happening. They (the parents) don't r e a l l y say t h a t gets s i c k or something or about a l l these p i l l s o r anything. C l : That's what a l o t of people do and t h a t r e a l l y wrecks up t h e i r k i d s . You know they don't under-stand what's happening. T h e i r l i t t l e b r o t h e r or s i s t e r o r something they're t a k i n g a l l these p i l l s and every week they go i n f o r an examination you know and they don't understand i t . So I t h i n k i t s b e t t e r l i k e t o be open wi t h the k i d s . And i t a l s o h e l ps out because we c o u l d understand him and we t r e a t e d him l i k e he was t h a t k i n d of per-son. He was a l i t t l e s i c k but we never r e a l l y h i n t e d t o i t . S i b l i n g s appeared to inform t h e i r peers about the i l l - 68 -c h i l d and r e q u i r e d c e r t a i n b e h a v i o r s from them r e g a r d i n g m a i n t a i n i n g of s p e c i a l s t a t u s of the i l l c h i l d but beyond t h a t v e r b a l exchange appeared t o be l i m i t e d . R: Do the k i d s at school know t h a t goes t o the h o s p i t a l and has treatments? C: Yeah. They don't t h i n k about i t though. R: Did you t e l l them about i t ? C: Yeah. R: Do they want t o know about leukemia and what happens? C: They don't bother t a l k i n g about i t . R: Do you t a l k to them about i t ? C: No. R: Have you ever t a l k e d t o any of the k i d s at school about ? C: No. They won't understand. They j u s t go, oh. They might f e e l s o r r y f o r you but i n s i d e they are r e a l l y saying oh who r e a l l y c a r e s . C: A l o t of people f e l t s o r r y you know. They'd say t h a t i t ' s too bad, you know, my f r i e n d s , you know. L i k e I was i n grade seven and you can be more open with them. They were p r e t t y f r i e n d l y about i t . Nobody r e a l l y t a l k e d about i t . R: Did you t a l k t o your f r i e n d s about i t ? C: I o n l y t o l d one person a t the be g i n n i n g . V e r b a l i z a t i o n o f concerns among the s i b l i n g s o r between s i b l i n g s and the i l l c h i l d a l s o appeared to be l i m i t e d . At no time i n the i n t e r v i e w s d i d any i n f o r m a t i o n come forward to support t h a t e x t e n s i v e v e r b a l i z a t i o n with r e f e r e n c e t o - 69 -the i l l n e s s experience took place i n the s i b l i n g subgroup. The lack of such conversation was confirmed by one mother. When questioned s p e c i f i c a l l y about conversations the c h i l -dren might have among themselves about the ongoing treatment procedures and sequelae she said, "They don't talk about i t . They just a l l do t h e i r own thing.". 4. Mortality of the 111 Child As part of the new normality s i b l i n g s were confronted with the e s s e n t i a l l y mortal nature of man. Consideration of the mortality of the i l l c h i l d seemed disturbing for the s i b l i n g . One of the s i b l i n g s indicated that thoughts of the i l l c h i l d ' s potential fate were close to the surface. Whenever I hear "leukemia" I always think about and things l i k e that. Sometimes when I look i n the newspaper that l i s t s sort of where the dead, peoples are, sometimes I hope he never gets i n - the paper where people that die - I hope he never gets there. That's how I f e e l about i t . Denial seemed to be used to help to reduce the anxiety associated with the thought of the leukemia not being con-t r o l l e d . This i s re f l e c t e d i n such statements as: He had leukemia. He doesn't have i t now. It's just a matter of staying healthy. Well I don't know. I just don't see him as having leukemia anymore. However, when discussing with the s i b l i n g who made the l a s t statement the kinds of things that concerned her about the i l l c h i l d t h i s interchange took place. R: What kinds of things do you worry about? C: About death. Siblings expressed concern about t h e i r own mortality. C: I'm a f r a i d to get cancer. I think I would die. I hate cancer. C: I hardly ever think about i t and when I do I just f e e l l i k e running away cause I don't want to think about i t. They could reconcile for themselves the fact that the i l l c h i l d had to undergo unpleasant diagnostic and treatment procedures. 5. What i s Normal? Normal appeared to be a subjective construct. It appeared to be related i n part to the amount of disruption s i b l i n g s perceive i n t h e i r d a i l y l i v e s . R: So you say that things have changed. That i t ' s changed your whole l i f e . C: Like we couldn't do sports then. But right now i t ' s getting back to usual. - 71 -And another s i b l i n g s a i d : U s u a l l y e v e r y t h i n g i s normal now. L i k e I p l a y s p o r t s and s t u f f . N o r mality a l s o seemed t o have s t r u c t u r a l c o n n o t a t i o n s . S i b l i n g s d e s c r i b e d the s i t u a t i o n as being normal when every-one was a t home. I t was r e l a t e d i n p a r t to the resumption by the parent of usual r o l e s . One s i b l i n g i n d i c a t e d t h i s by the statement t h a t u s u a l l y when the i l l c h i l d was i n school the mother, who was a teacher, was subbing. In one f a m i l y , n o r m a l i t y was a s s o c i a t e d w i t h the i l l c h i l d resuming h i s a c t i v i t i e s . In the second i n t e r v i e w , when t a l k i n g about the s t a t e of the i l l c h i l d ' s h e a l t h and the f a m i l y s i t u a t i o n the s i b l i n g s v o l u n t e e r e d : He's p l a y e d w i t h h i s f r i e n d s a l o t . Does he? He's p l a y e d the piano. Does he? He took lessons, the h o s p i t a l . He d i d t h a t b e f o r e he went i n t o The i l l c h i l d i n one of the f a m i l i e s had not been walking p r o p e r l y f o r s e v e r a l months. An i n t e r e s t i n g pheno-menon took p l a c e as t h i s too became i n c o r p o r a t e d i n t o nor-m a l i t y . - 72 -R: You don't see him as having leukemia anymore? C: I j u s t see him - I don't know - he's j u s t slow -and I have to c a r r y him everywhere I go. I n c o r p o r a t i o n of t h i s event as being normal occ u r r e d when a "cause" which was normal o c c u r r e d . The c h i l d had been s t r u c k by a van. One of the s i b l i n g s gave t h a t as the reason the c h i l d c o u l d not walk, i n d i c a t i n g t h a t i t had happened awhile ago. In a c t u a l f a c t i t had happened w i t h i n the preceeding two weeks and the c h i l d had not walked f o r s e v e r a l months. The examination a f t e r the a c c i d e n t a t t r i -buted no damage as a r e s u l t of t h i s a c c i d e n t . Much l a t e r i n the i n t e r v i e w t h i s same s i b l i n g r e l a t e d t h a t the c h i l d had not walked f o r some time because of the medicine he was t a k i n g . The younger s i b l i n g s gave c l u e s about how they were i n c o r p o r a t i n g t h i s lack of m o b i l i t y i n t o n o r m a l i t y as w e l l . One of the c h i l d r e n i n the neighborhood had asked about the i l l c h i l d ' s limp. The i l l c h i l d s a i d to the s i b l i n g who was t e l l i n g of t h i s event, "Why d i d n ' t you t e l l her I was h i t by a van?". The s i b l i n g r e p l i e d , "I d i d , " and a l l of the s i b l i n g s seemed happy with the s o l u t i o n . 6. Why Redefine Normal? Two statements which s i b l i n g s made became important to t h i s r e s e a r c h e r i n c o n s i d e r i n g the concept of n o r m a l i t y as a component i n the c o n c e p t u a l i z a t i o n of the s i b l i n g s ' p e r -c e p t i o n of the experience under study. The f i r s t was made with r e f e r e n c e to undergoing d i a g n o s t i c t e s t s . - 73 -He's got used to i t I guess. The second was made with r e f e r e n c e t o the n e c e s s i t y t o undergo chemotherapy and s u f f e r i t s unpleasant s i d e - e f f e c t s . I t ' s j u s t a n a t u r a l t h i n g - everyone has to do t h i n g s . L i k e a chore. I t appeared t h a t by r e d e f i n i n g n o r m a l i t y s i b l i n g s were more e f f e c t i v e l y d e a l i n g with the concomitants of day to day l i v i n g i n a f a m i l y where a c h i l d was being t r e a t e d f o r cancer. THE RELATIONSHIP BETWEEN THE CONCEPTS AND THE PROPOSAL OF A CORE VARIABLE The concept of s p e c i a l s t a t u s f o r the i l l c h i l d appears to be i n t e g r a l t o the concept of a new n o r m a l i t y . I t ap-pears t h a t over time beginning with the c r e a t i o n of s p e c i a l s t a t u s and i n support of the maintenance of t h a t concept the s i b l i n g s c o n s t r u c t a new d e f i n i t i o n of what c o n s t i t u t e s normal. I t i s proposed t h a t the process of r e d e f i n i n g n o r m a l i t y i s the core v a r i a b l e i n t h i s data. The r e d e f i n i -t i o n of n o r m a l i t y appears t o make i t p o s s i b l e f o r the s i b -l i n g s to accept as normal the s p e c i a l s t a t u s of the i l l c h i l d , the n e c e s s i t y f o r the i l l c h i l d t o r e g u l a r l y undergo unpleasant d i a g n o s t i c t e s t s and treatments, and the p e r i o d i c i n c a p a c i t a t i o n of the i l l c h i l d as a r e s u l t of treatments. - 74 -The m o r t a l i t y of the i l l c h i l d was not i n c o r p o r a t e d i n t o the r e d e f i n i t i o n of n o r m a l i t y i n t h i s data. SUMMARY T h i s r e s e a r c h e r ' s c o n c e p t u a l i z a t i o n of' the s i b l i n g ' s p e r c e p t i o n of day to day l i v i n g when another c h i l d i n the f a m i l y i s being t r e a t e d f o r cancer has been presented. In the next chapter the d i s c u s s i o n w i l l focus on r e l a t i n g t h i s c o n c e p t u a l i z a t i o n to the l i t e r a t u r e . - 7 5 -CHAPTER V: DISCUSSION INTRODUCTION Chapter IV i d e n t i f i e d s p e c i a l s t a t u s f o r the i l l c h i l d and a new n o r m a l i t y as concepts t h a t emerged from the data. R e d e f i n i n g n o r m a l i t y was i d e n t i f i e d as a core v a r i a b l e . In the f o l l o w i n g d i s c u s s i o n , t h i s c o n c e p t u a l i z a t i o n of the r e s e a r c h data w i l l be r e l a t e d to the l i t e r a t u r e from three p e r s p e c t i v e s . F i r s t , themes found i n s t u d i e s which r e f l e c t the s i b l i n g ' s p e r s p e c t i v e of l i f e w ith a c h r o n i c a l l y i l l c h i l d w i l l be compared with themes found i n t h i s study. Second, the concepts i d e n t i f i e d i n t h i s study w i l l be com-pared to s i m i l a r concepts d i s c u s s e d i n the l i t e r a t u r e . F i n a l l y , methodology used to a r r i v e at the d e s c r i b e d con-c e p t u a l i z a t i o n w i l l be d i s c u s s e d . COMPARING THEMES IDENTIFED IN THE LITERATURE TO THEMES FOUND IN THIS STUDY In t h i s s e c t i o n , themes i d e n t i f i e d i n s t u d i e s r e p o r t e d i n the l i t e r a t u r e are compared to those of the present study. The l i m i t e d number of s t u d i e s r e f e r r e d to r e f l e c t s the s c a r c i t y of s t u d i e s r e p o r t e d which address the s i b l i n g s p e r s p e c t i v e . - 76 -A. N e g a t i v e F e e l i n g s s u c h as A n g e r and R e sentment The p r e s e n c e o f n e g a t i v e f e e l i n g s i n t h e s i b l i n g s , i n -c l u d i n g a n g e r and r e s e n t m e n t w i t h a c c o m p a n y i n g g u i l t a t e x p e r i e n c i n g t h e s e f e e l i n g s , i s r e f e r r e d t o i n t h e l i t e r a -t u r e by s e v e r a l a u t h o r s ( S h a r e 1971; S p i n e t t a , Kung, and S c h w a r t z 1976; K a g e n - G o o d h e a r t 1977; B u r t o n 1 975). Most o f t h e d a t a o f t h e s e a u t h o r s were b a s e d on p a r e n t a l r e p o r t s . A l t h o u g h i t was a n t i c i p a t e d t h a t a theme s i m i l a r t o t h e s e s u g g e s t i o n s w o u l d be f o u n d i n t h i s s t u d y , t h a t a n t i c i p a t i o n d i d n o t m a t e r i a l i z e . P e r h a p s t h e o p e r a t i v e f a c t o r h e r e was " n o t o n l y do p e o p l e i n t e r p r e t t h i n g s d i f f e r e n t l y , t h e y f o c u s t h e i r a t t e n t i o n on d i f f e r e n t t h i n g s " (Bogdan and T a y l o r 1975, p. 1 0 ) . F u r t h ( 1 9 8 0 ) , u s i n g a m e t h o d o l o g y s i m i l a r t o t h a t employed i n t h i s s t u d y , h a s d e m o n s t r a t e d t h a t a c h i l d ' s c o n c e p t i o n o f s o c i e t y i s v a s t l y d i f f e r e n t t h a n t h a t o f an a d u l t . T h e r e i s r e a s o n t o b e l i e v e t h a t t h e v i e w o f s i b l i n g s a b o u t l i v i n g w i t h a c h i l d w i t h a l i f e - t h r e a t e n i n g i l l n e s s w o u l d be d i f f e r e n t t h a n t h e a d u l t ' s i n t e r p r e t a t i o n o f t h e s i b l i n g ' s v i e w . I n s u p p o r t o f p a r e n t a l r e p o r t s o f t h e n e g a t i v e f e e l i n g s d e m o n s t r a t e d by s i b l i n g s , S. T a y l o r (1980) f o u n d s i b l i n g s a d m i t t e d t o o c c a s i o n a l l y h a v i n g d e a t h w i s h e s f o r t h e i r i l l s i b l i n g s and s a y i n g o r d o i n g t h i n g s t o t h e i l l c h i l d w h i c h t h e y c o u l d i d e n t i f y as b e i n g c r u e l o r a n g r y . The d a t a i n t h e p r e s e n t s t u d y d i d n o t show a n g e r and r e s e n t m e n t as b e i n g p r o m i n e n t themes. T h i s i s n o t t o say t h e y may n o t have f o r m e d a p a r t o f t h e s i b l i n g s ' p e r c e p t i o n . The i n t e r v i e w - 77 -may not have e l i c i t e d t h i s aspect of p e r c e p t i o n or these f e e l i n g s may not have been a component of p e r c e p t i o n at the time of the i n t e r v i e w . B. I s o l a t i o n and D e p r i v a t i o n S. T a y l o r (1980) found f e e l i n g s of i s o l a t i o n on the p a r t of the s i b l i n g s t o be the l a r g e s t s i n g l e e f f e c t of the i l l c h i l d , with s i b l i n g s f e e l i n g i s o l a t e d from f a m i l y r e l a -t i o n s h i p s as the p a r e n t ( s ) and i l l c h i l d formed a dyad which excluded them. F e e l i n g s of d e p r i v a t i o n i n terms of p a r e n t a l time and a t t e n t i o n were p r e v a l e n t . The present study does not seem to support t h i s f i n d i n g , but t h a t may be a f a c t o r of the time p e r i o d i n the i l l n e s s t r a j e c t o r y which was sampled, or a f a c t o r r e l a t e d t o s p e c i f i c treatment or i l l -ness v a r i a b l e s . The c h i l d r e n i n T a y l o r ' s study i n c l u d e d a p o p u l a t i o n with asthma and c y s t i c f i b r o s i s both of which can i n v o l v e an e x t e n s i v e d e d i c a t i o n of p a r e n t a l time i n t r e a t -ment procedures. In t h i s study there was not d a i l y i n v o l v e -ment of p a r e n t a l time i n treatment procedures. The study of Harder and Bowditch (1982) a l s o does not support the concept of i s o l a t i o n of the s i b l i n g s . They found s i b l i n g s r e p o r t e d t h a t the f a m i l y was drawn c l o s e r together as a r e s u l t of the i l l n e s s of one c h i l d . At the same time, however, some of the s i b l i n g s complained about decreased p a r e n t a l a t t e n t i o n as parents spent more time with the i l l c h i l d . - 78 -C. Change Two o f t h e s t u d i e s r e v i e w e d f o u n d change t o be a theme (S. T a y l o r 1980; l i e s 1 979). However, t h e c o n c e p t u a l i z a t i o n o f change by t h e two r e s e a r c h e r s was d i f f e r e n t . l i e s i d e n t i f i e d l o s s e s as t h e p r i m a r y component o f c h a n g e . The l o s s e s r e l a t e d t o q u a n t i t y and q u a l i t y o f r e l a t i o n s h i p s w i t h p a r e n t s and w i t h t h e i l l c h i l d . I n t h e p r e s e n t s t u d y l o s s was p r e s e n t as a theme p a r t i c u l a r l y e x e m p l i f i e d i n c o n c e r n s r e g a r d i n g p o s s i b l e d e a t h o f one c h i l d b u t i t was n o t a d o m i n a n t theme i n p e r c e p t i o n . T h i s may r e f l e c t t h e s t a g e o f t h e i l l n e s s e x i s t i n g a t t h e t i m e o f t h e s t u d y , as l i e s ' sample i n c l u d e d o n l y two c a s e s where t h e i l l c h i l d was i n r e m i s s i o n . The o t h e r s were i n a more c r i s i s - o r i e n t e d p e r i o d , t h a t i s , newly d i a g n o s e d , f i r s t e x a c e r b a t i o n , o r t e r m i n a l . T h e r e i s no i n d i c a t i o n t h a t t h e l e n g t h o f t h e r e m i s s i o n p e r i o d had b e en e s t a b l i s h e d . I n t h e c u r r e n t s t u d y , b o t h i l l c h i l d r e n had b e e n i n r e m i s s i o n f o r more t h a n e i g h t months and r e m a i n e d i n r e m i s s i o n t h r o u g h o u t t h e s t u d y . T h e r e had b e en t i m e f o r r e l a t i o n s h i p s t o s t a b i -l i z e . A l s o , n e i t h e r c h i l d h a d b e en h o s p i t a l i z e d a p a r t f r o m t h e p e r i o d a s s o c i a t e d w i t h t h e i n i t i a l d i a g n o s t i c and t r e a t -ment p e r i o d . The d a t a c o l l e c t i o n method may a l s o a c c o u n t f o r t h e d i f f e r e n c e , as l i e s a s k e d c h i l d r e n t o draw a p i c t u r e a b o u t t h e f a m i l y t o f a c i l i t a t e s y m b o l i c c o m m u n i c a t i o n o f p e r c e p t i o n . T h i s method may have r e s u l t e d i n an e x p r e s s i o n o f f e e l i n g s n o t e l i c i t e d by t h e i n t e r v i e w t e c h n i q u e u s e d i n t h i s s t u d y . T h i s r e a s o n i n g i s s u p p o r t e d i n t h e f i n d i n g s o f - 79 -M. M. T a y l o r ( T a y l o r 1980) which i n d i c a t e t h a t i n t e r v i e w d e s c r i p t i o n s o f f a m i l i e s were c o h e s i v e , but f a m i l y drawings d e p i c t e d f e e l i n g s o f i s o l a t i o n . S. T a y l o r (1980) i d e n t i f i e d change i n r e l a t i o n t o p o s i t i v e e f f e c t s o f t h e i l l n e s s e x p e r i e n c e f o r the s i b l i n g s . She commented on t h e s i b l i n g s ' a c c e p t a n c e o f changes i n t h e f a m i l y caused by t h e i l l n e s s , and t h e i n c r e a s e d r e s p o n s i -b i l i t y o f t h e s i b l i n g w i t h r e f e r e n c e t o p a r t i c i p a t i n g w i t h o t h e r f a m i l y members i n t h e t r e a t m e n t o f t h e i l l n e s s o r improvement i n t h e i l l c h i l d ' s c o n d i t i o n . S i b l i n g s p e r -formed c h o r e s f o r t h e i l l c h i l d and assumed some p a r e n t a l f u n c t i o n s r e g a r d i n g t r e a t m e n t s , and m o n i t o r i n g t h e i l l c h i l d ' s d i e t and m e d i c a t i o n s . She s t a t e s : Some c h i l d r e n were r e m a r k a b l y i n tune w i t h t h e i r p a r e n t s and t h e i l l s i b l i n g s ' f e e l i n g s and t r i e d t o a d j u s t t h e i r own b e h a v i o r a c c o r d i n g l y (p. 115). The f o l l o w i n g s t a t e m e n t s which were made by s i b l i n g s i n T a y l o r ' s s t u d y , would have been i d e n t i f i e d i n the p r e s e n t s t u d y as b e i n g r e l a t e d t o t h e s p e c i a l s t a t u s o f t h e i l l c h i l d . I c u t t h e g r a s s f o r him so he won't wheeze. I h e l p h e r w i t h h er s c h o o l work when she has t o miss s c h o o l so she won't get b e h i n d (pp. 6 0 - 62). Harder and B o w d i t c h (1982) a l s o i n d i c a t e d t h a t i n t h e i r s tudy t h e s i b l i n g s r e f e r r e d t o change i n commenting on t h e i n c r e a s e d number of ch o r e s f o r which t h e y were r e s p o n s i b l e . - 80 -I n t h e p r e s e n t s t u d y t h e o v e r a l l c o n c e p t o f change has b e en i n c o r p o r a t e d i n t o r e d e f i n i n g n o r m a l i t y . COMPARING CONCEPTS IDENTIFIED IN THIS STUDY TO SIMILAR CONCEPTS DISCUSSED IN THE LITERATURE A. S p e c i a l S t a t u s o f t h e 111 C h i l d The c r e a t i o n and m a i n t e n a n c e o f s p e c i a l s t a t u s f o r t h e i l l c h i l d has b e e n d e s c r i b e d i n t h i s d a t a as o c c u r r i n g c y b e r n e t i c a l l y as an a c t i v e p r o c e s s as s i b l i n g s r e s p o n d t o t h e w o r l d a r o u n d them. The c o n c e p t o f s p e c i a l s t a t u s o f t h e i l l c h i l d h a s b e e n s u p p o r t e d i n t h e l i t e r a t u r e . H a r d e r and B o w d i t c h (1982) r e p o r t s i b l i n g s o f c h i l d r e n w i t h c y s t i c f i b r o s i s as b e i n g aware o f t h e i r b r o t h e r ' s o r s i s t e r ' s need f o r more t i m e w i t h t h e i r p a r e n t s and a c c e p t i n g t h i s r e q u i r e m e n t . The s i b l i n g s a l s o seemed t o u n d e r s t a n d and s u p p o r t t h e i m p o r t a n c e o f g i v i n g p r i o r i t y t o t h e i l l c h i l d ' s n e e d s . They r e p o r t s i b l i n g s made t h e f o l l o w i n g s t a t e m e n t s w i t h r e f e r e n c e t o f a m i l y f i n a n c e s . Mom a l w a y s t o l d me i f i t came down t o no f u r n i t u r e o r new c l o t h e s i t d o e s n ' t m a t t e r . So l o n g as we c a n h e l p h e r have m e d i c i n e a n y t i m e she needs i t . I t ' s p r o b a b l y t h a t l i t t l e b i t o f e x t r a money. I c a n ' t t h i n k o f a n y t h i n g s p e c i f i c , j u s t e x t r a money we c o u l d u s e . B u t I r e a l l y d o n ' t mind b e c a u s e i t s t o h e l p J o s h u a . (p. 118) - 81 -B u r t o n ( 1 9 7 5 ) , a l t h o u g h n o t naming t h e c o n c e p t o f s p e c i a l s t a t u s , f o u n d i n d i c a t o r s o f i t i n p a r e n t a l r e p o r t s o f s i b l i n g s s h o wing l o w e r e d a g g r e s s i o n , i n c r e a s e d p r o t e c t i o n and e x t r a c a r e t o w a r d s t h e c h i l d i n f a m i l i e s w i t h c y s t i c f i b r o s i s p a r t i c u l a r l y when t h e s i b l i n g was o l d e r t h a n t h e i l l c h i l d . I n a s t u d y w h i c h a d d r e s s e d t h e c o n s t r u c t i o n by t h e p a r e n t o f s o c i a l r e a l i t y f o r t h e s i c k and t h e w e l l c h i l d , A n d e r s o n (1981b) f o u n d w e l l c h i l d r e n were e n c o u r a g e d t o d e v e l o p s o c i a l and p s y c h o m o t o r s k i l l , w hereas n o r m a l p l a y and n ormal s o c i a l r e l a t i o n s f o r t h e i l l c h i l d were d i s -c o u r a g e d . S o c i a l i n t e r a c t i o n was n o t e m p h a s i z e d b u t t h e m o t h e r - c h i l d i n t e r a c t i o n was i n t e n s i f i e d . T h i s t y p e o f p a r e n t a l a c t i v i t y w o u l d c o n t r i b u t e t o t h e p r o c e s s i d e n t i f i e d i n t h i s s t u d y as c o n s t r u c t i o n and m a i n t e n a n c e o f s p e c i a l s t a t u s f o r t h e i l l c h i l d . B. R e d e f i n i n g N o r m a l i t y The a n a l y s i s o f t h e d a t a i n t h i s s t u d y i n d i c a t e s t h a t c r e a t i o n and m a i n t e n a n c e o f s p e c i a l s t a t u s f o r t h e i l l c h i l d a r e p a r t o f a l a r g e r p r o c e s s w h i c h has b e en t e r m e d r e d e -f i n i n g n o r m a l i t y o r c o n s t r u c t i n g a new n o r m a l i t y . N o r m a l i z a t i o n o f t h e i l l n e s s e x p e r i e n c e h a s b e e n a d -d r e s s e d i n t h e l i t e r a t u r e f r o m two p o i n t s o f v i e w . S t r a u s s (1975) d e s c r i b e s t h i s p r o c e s s f r o m t h e p o i n t o f v i e w o f t h e i l l p e r s o n , i d e n t i f y i n g n o r m a l i z i n g as a b a s i c s t r a t e g y u s e d by t h e i l l p e r s o n i n t h e c o u r s e o f l i v i n g w i t h a c h r o n i c i l l n e s s . The a c t i o n s a s s o c i a t e d w i t h t h e s t r a t e g y a r e - 82 -d e p e n d e n t on s u c h f a c t o r s as t h e i n d i v i d u a l ' s symptoms, t r e a t m e n t r e g i m e n s , and knowledge o f o t h e r s a b o u t t h e i l l -n e s s . S t r a u s s i n c l u d e s an i l l u s t r a t i o n o f a n a p p l i c a t i o n o f t h i s s t r a t e g y by a c h i l d w i t h a c a r d i a c i m p a i r m e n t . . . u s e d t o be e s p e c i a l l y f o n d o f p l a y i n g cow-b o y s and I n d i a n s . He was much i n demand as an I n d i a n b e c a u s e t h e y were a l w a y s g e t t i n g s h o t and he c o u l d r e s t w h i l e he l a y down and p l a y e d "dead", (p. 58) T h i s b e h a v i o r was i l l u s t r a t e d i n t h i s s t u d y when t h e c h i l d r e n were d i s c u s s i n g r e a s o n s f o r t h e i l l c h i l d n o t b e i n g a b l e t o walk and t h e i l l c h i l d s a i d "Why d i d n ' t y o u t e l l h e r I was h i t b y a v a n ? " . A n d e r s o n (1981 b) d e s c r i b e s t h e p r o c e s s o f n o r m a l i z a -t i o n as a component o f t h e way i n w h i c h p a r e n t s o f c h r o n i c -a l l y s i c k c h i l d r e n u n d e r s t o o d and d e s c r i b e d t h e i r c h i l d ' s i l l n e s s , and a component o f t h e i r i n t e r a c t i o n s w i t h t h e c h i l d . She s t a t e d f a m i l i e s p e r c e i v e d n o r m a l i z a t i o n o f t h e s i c k n e s s was i m p o r t a n t i n h e l p i n g t h e i l l c h i l d t o a c c e p t t h e t h e r a p e u t i c r e g i m e . They d i d n o t c o n s i d e r t h e d i s e a s e p r o c e s s as n o r m a l b u t t h e y : . . . c o n s t r u c t e d t h e i l l n e s s e x p e r i e n c e w i t h t h e c h i l d and f o r t h e r e s e a r c h e r i n s u c h a way as t o n o r m a l i z e t h e e x p e r i e n c i n g o f a p a t h o l o g i c a l p r o c e s s ( p . 430) . RELATING THE METHODOLOGY TO THE LITERATURE The grounded theory approach has been documented i n the l i t e r a t u r e as useful i n the study of c l i n i c a l nursing pro-blems. It has been u t i l i z e d i n nursing research to gain an understanding about the c l i e n t ' s view of the si t u a t i o n (Stern 1980; Fagerhaugh and Strauss 1977). Two terms that appear frequently i n l i t e r a t u r e i n r e l a t i o n to t h i s approach are ethnography and grounded theory. Aamodt (1982) suc-c i n c t l y d i f f e r e n t i a t e s between these two approaches i n d i -cating that ethnography refers to culture and c u l t u r a l pro-cesses whereas grounded theory refers to so c i a l processes. This study being concerned with s o c i a l processes has u t i l i z -ed grounded theory. The data c o l l e c t i o n process was centered around e l i c i t i n g descriptions of behaviors and feelings r e l a t i v e to spe c i f i e d experiences. E l i c i t i n g s i m i l a r data from the same subjects at time i n t e r v a l s of six months can be ci t e d i n support of the v a l i d i t y of the data. Prior to the second interview with s i b l i n g s of each family being conducted i n i -t i a l coding had been carried out. When topics which appear-ed to be related to previously i d e n t i f i e d codes, themes, and concepts occurred, the researcher concentrated on asking questions aimed at confirming t h e i r existence and c l a r i f y i n g t h e i r meanings. This i s consistent with theoretical samp-l i n g (Glaser 1978) and with the suggestions of Aamodt (1982) to return to the scene to recheck observations. - 84 -The i d e a l method o f d a t a c o l l e c t i o n f o r t h i s s t u d y w o u l d no d o u b t have been l i v i n g w i t h a f a m i l y f o r a p e r i o d o f t i m e as a p a r t i c i p a n t o b s e r v e r . T h i s b e i n g i m p r a c t i c a l , i n t e r v i e w s were c o n d u c t e d d u r i n g w h i c h t h e i n v e s t i g a t o r p r o m p t e d t h e s i b l i n g s t o d i s c u s s t h e e x p e r i e n c e o f day t o day l i v i n g . C o n s e q u e n t l y , remembered e x p e r i e n c e was ex-p l o r e d ( O i l e r 1 9 8 1). The i n d i v i d u a l i s t h u s i n t e r p r e t i n g " e x p e r i e n c e i n r e f l e c t i o n " ( p . 179) h a v i n g made s e n s e o f t h e e x p e r i e n c e o r making s e n s e o f i t i n t h e p r o c e s s o f i n t e r -p r e t a t i o n . The r e s e a r c h e r ' s t a s k i s t h e n t o answer t h e q u e s t i o n "What i s r e a l l y g o i n g on h e r e ? " , o r i n t h e words o f G l a s e r (1978 p . 57) "What i s t h e b a s i c s o c i a l p s y c h o l o g i c a l p r o c e s s o r s o c i a l s t r u c t u r a l p r o c e s s t h a t p r o c e s s e s t h e p r o b l e m t o make l i f e v i a b l e i n t h e a c t i o n s c e n e ? " . The c o n c e p t s o f t r u t h and r e a l i t y t a k e on a d i f f e r e n t p e r s p e c t i v e w i t h i n t h e c o n t e x t o f a q u a l i t a t i v e s t u d y (Bog-dan and T a y l o r 1 9 75). R e a l i t y becomes s u b j e c t i v e l y d e f i n e d by t h e p a r t i c i p a n t s and t h e r e s e a r c h e r must a t t e m p t t o p r e s e n t t h e s u b j e c t ' s v i e w o f t h e w o r l d as s e e n by t h e s u b j e c t a t t h a t moment i n t i m e w i t h t h e f o l l o w i n g q u a l i f i -c a t i o n s b e i n g added. J u s t as d i f f e r e n t p e o p l e may i n t e r p r e t t h e same t h i n g s d i f f e r e n t l y , so t o o may t h e same p e r s o n i n t e r p r e t t h i n g s d i f f e r e n t l y a t d i f f e r e n t t i m e s . (Bogdan and T a y l o r 1975,p. 11) The s t u d y o f t h e s i b l i n g ' s p e r c e p t i o n o f day t o day l i v i n g when a n o t h e r c h i l d i n t h e f a m i l y i s b e i n g t r e a t e d f o r - 85 -c a n c e r i s i n p a r t a s t u d y o f r e l a t i o n s h i p s and f a c t o r s a f f e c t i n g t h o s e r e l a t i o n s h i p s . The method u s e d i n d a t a c o l l e c t i o n and a n a l y s i s i n t h i s s t u d y h a s b e e n d i r e c t e d a t o v e r c o m i n g a method e r r o r i d e n t i f i e d by S h o l t e r (1974) as e x i s t i n g i n s o c i o - p s y c h o l o g i c a l r e s e a r c h . P e r s o n a l r e l a t i o n s h i p s and o t h e r human g r o u p i n g s do n o t e x i s t and f u n c t i o n a s m a t t e r s o f f a c t , b u t a r e m a i n t a i n e d by t h e i n t e n t i o n o f members t o m a i n t a i n them . . . P e r s o n a l r e l a t i o n s h i p s n eed t o be d e s c r i b e d i n a way e x c l u s i v e l y human; i n t e r m s o f what t h e p e o p l e i n them a r e t r y i n g t o do. ( p . 223) The i n t i m a t e i n v o l v e m e n t o f t h e r e s e a r c h e r i n t h e r e s e a r c h p r o c e s s i s documented as a f r e q u e n t c r i t i c i s m o f q u a l i t a t i v e m e t h o d o l o g y (Bogdan and T a y l o r 1975; C i c o u r e l 1976; R i s t 1 9 7 9 ) . O i l e r (1982) s u g g e s t s b r a c k e t i n g as a means o f c o n t r o l l i n g o b s e r v e r b i a s . B r a c k e t i n g i n v o l v e s b r i n g i n g an e x p e r i e n c e i n t o c l e a r e r f o c u s by c o n t r o l l e d r e f l e c t i o n , c o n s i d e r i n g o p p o s i n g v i e w s o f t h e same s i t -u a t i o n , q u e s t i o n i n g , and b e i n g r e c e p t i v e . T h i s p r o c e s s was emplo y e d i n t h i s s t u d y a t s e v e r a l l e v e l s . Examples i n c l u d e t h e l i t e r a t u r e r e v i e w b e i n g c o n d u c t e d as t h e d a t a was b e i n g a n a l y z e d , t h e p r o c e s s o f p r o b l e m i d e n t i f i c a t i o n , t h e d a t a c o l l e c t i o n p r o c e d u r e , and f i n a l l y t h e d a t a a n a l y s i s p r o -c e d u r e . F r a c t u r i n g t h e d a t a and t h e n p u t t i n g t h e c o n c e p t s b a c k t o g e t h e r a s r e l a t i o n s h i p s a r e p o s t u l a t e d goes b e y o n d a s k i n g t h e i n d i v i d u a l t o i d e n t i f y what i s g o i n g on o r t o i d e n t i f y f a c t o r s t o w h i c h t h e y a r e s e n s i t i v e . I n f a c t , N i s b e t t and - 86 -Wilson (1977) found people unable to i d e n t i f y the causes of t h e i r behavior. Bowers (1981) extends t h i s conception to argue people have an a b i l i t y to respond productively to information not f u l l y s p e c i f i e d or represented i n conscious-ness. They argue t h i s i s consistent with a theory of t a c i t knowledge and i m p l i c i t responsiveness. This researcher argues that the l a t t e r lends c r e d i b i l i t y to the research method followed i n t h i s study. This research has demonstrated the u t i l i t y of the described methodology for conceptualizing an ind i v i d u a l ' s perception of a s i t u a t i o n . I t i s recognized that r e l i a b i -l i t y of the findings i s a function of the number of ex-periences sampled and would be enhanced by additional data c o l l e c t i o n including extensive t h e o r e t i c a l sampling. The use of the approach of grounded theory does create a dilemma i n terms of the t r a d i t i o n a l approach to r e p l i c a -t i o n of the study. The data c o l l e c t e d for a second study would be d i f f e r e n t and the i n t e r a c t i o n between the coder and the data w i l l be unique to that coder and that data as the researcher i s an i n t e g r a l part of the data and the analysis. In grounded theory the analyst must do his/her own coding as the codes arise from the data and the memos written by the analyst during the coding process are i n t e g r a l to the devel-opment of emergent theory (Glaser 1978). This researcher did not f i n d examples of r e p l i c a t i n g studies using grounded theory i n the l i t e r a t u r e . - 8 7 -SUMMARY OF THE DISCUSSION There i s support i n the l i t e r a t u r e f o r the concepts of s p e c i a l s t a t u s and a new n o r m a l i t y , and t h e i r r e l a t i o n s h i p t o the s i b l i n g ' s p e r c e p t i o n as p o s t u l a t e d i n t h i s study. There i s a l s o support i n the l i t e r a t u r e f o r the methodology used t o i d e n t i f y the concepts. The i m p l i c a t i o n s of the f i n d i n g s of t h i s study f o r n u r s i n g p r a c t i c e and n u r s i n g r e s e a r c h are c o n s i d e r e d i n Chapter VI. - 88 -CHAPTER VI: SUMMARY AND CONCLUSIONS SUMMARY OF THIS STUDY T h i s study presented a q u a l i t a t i v e approach to the c o n c e p t u a l i z a t i o n of the s i b l i n g ' s p e r c e p t i o n of day to day l i v i n g when a c h i l d i n the f a m i l y was being t r e a t e d f o r cancer. T h i s study d i f f e r e d from p r e v i o u s r e s e a r c h i n t h a t concepts were i d e n t i f i e d u s i n g the approach of grounded theory t o i d e n t i f y s o c i a l p r o c e s s e s . The purpose of the study was to c o n c e p t u a l i z e the s i b l i n g ' s experience of day to day l i v i n g when another c h i l d i n the f a m i l y was being t r e a t e d f o r cancer. Interviews were conducted with school-aged s i b l i n g s o f p e d i a t r i c cancer p a t i e n t s . The data were s u b j e c t e d t o a process of constant coding, comparison, and re c o d i n g t o d e r i v e the concepts p r e s e n t i n the data and to d e r i v e r e l a t i o n s h i p s between the concepts. R e d e f i n i n g n o r m a l i t y was i d e n t i f i e d as the core v a r i a b l e i n the data with the concepts of no r m a l i t y and s p e c i a l s t a t u s of the i l l c h i l d being i d e n t i f i e d as r e l a t e d t o the r e d e f i n i t i o n of n o r m a l i t y . The s p e c i a l s t a t u s of the i l l c h i l d was i d e n t i f i e d as an i n t e g r a l component of the new no r m a l i t y . A review of the l i t e r a t u r e i n d i c a t e d support f o r the presence of t'he s t a t e d concepts and f o r the methodology by which the concepts were d e r i v e d . T h i s has been a p r e l i m i n a r y study and as such i t s primary c o n t r i b u t i o n t o theory development i s t o r a i s e - 89 -q u e s t i o n s w h i c h i n d i c a t e some d i r e c t i o n f o r f u t u r e r e s e a r c h . Some i m p l i c a t i o n s f o r n u r s i n g p r a c t i c e a r i s e f r o m t h e d a t a . SUGGESTIONS FOR FURTHER RESEARCH T h i s s t u d y was a p p r o a c h e d from t h e p o i n t o f v i e w o f s o c i a l p r o c e s s e s and g r o u n d e d t h e o r y . An a l t e r n a t i v e a p -p r o a c h t o t h e c o n d u c t o f t h i s s t u d y w o u l d be t h a t o f e t h n o -g r a p h y w h i c h i s c o n c e r n e d w i t h c u l t u r e and c u l t u r a l p r o -c e s s e s . I t i s s u g g e s t e d t h a t s u c h a s t u d y be c o n d u c t e d f o r t h e p u r p o s e o f c o m p a r i n g t h e u t i l i t y o f e a c h i n c o n t r i b u t i n g t o t h e d e v e l o p m e n t o f t h e o r y i n r e l a t i o n t o p e r c e p t i o n o f day t o day l i v i n g by s i b l i n g s o f c h i l d r e n w i t h l i f e -t h r e a t e n i n g i l l n e s s e s . C o m p a r i s o n o f t h e c o n c e p t u a l i z a t i o n o f t h e d a t a i n t h i s s t u d y w i t h f i n d i n g s o f s t u d i e s r e p o r t e d i n t h e l i t e r a t u r e s u g g e s t f a c t o r s a s s o c i a t e d w i t h t h e i l l n e s s t r a j e c t o r y as w e l l a s e x p e r i e n c e s o v e r t i m e a r e s a l i e n t i n t h e s i b l i n g ' s p e r c e p t i o n . R e s e a r c h i n t h e form o f l o n g i t u d i n a l s t u d i e s a n d / o r s t u d i e s s a m p l i n g a b r o a d s p e c t r u m o f day t o day e x p e r i e n c e s o v e r t i m e w o u l d h e l p t o c l a r i f y t h e n a t u r e o f t h e r e l a t i o n s h i p o f t h e s e v a r i a b l e s t o t h e s i b l i n g ' s p e r c e p -t i o n o f day t o day l i v i n g . The d a t a i n t h i s s t u d y i n d i c a t e s i b l i n g s ' a r t i c u l a t i o n o f t h e i r knowledge a b o u t t h e i l l n e s s c o n d i t i o n i s p o o r . T a y l o r (1980) f o u n d s i b l i n g s d e m o n s t r a t e d an i n a d e q u a t e k n o w l edge. H e a l t h c a r e w o r k e r s do n o t a p p e a r t o be s e e n as i i - 9 0 -a source of i n f o r m a t i o n by s i b l i n g s . Research should d e t e r -mine the nature and source of the s i b l i n g ' s i n f o r m a t i o n about the i l l n e s s c o n d i t i o n and the p a r t t h i s i n f o r m a t i o n p l a y s i n the s i b l i n g ' s p e r c e p t i o n of day to day l i v i n g i n a f a m i l y where a c h i l d i s being t r e a t e d f o r cancer. The adequacy of the i n f o r m a t i o n r e l a t i v e t o i t s intended func-t i o n should a l s o be e x p l o r e d . The p o p u l a t i o n of t h i s study was l i m i t e d t o s i b l i n g s of c h i l d r e n with cancer but the r e s e a r c h r e l a t e d to c h i l d r e n w i t h other long-term i l l n e s s e s was i n c l u d e d i n the compar-i s o n of the f i n d i n g s with the l i t e r a t u r e . These long-term i l l n e s s e s g e n e r a l l y came under the r u b r i c of l i f e t h r e a -t e n i n g . Research which addresses the v a l i d i t y of grouping cancer w i t h other long-term i l l n e s s e s or c h r o n i c i l l n e s s e s i s i n o r d e r a t t h i s time. T h i s study has demonstrated t h a t the s i b l i n g i s s e n s i -t i v e to much more i n f o r m a t i o n communicated to him about c h i l d h o o d cancer than t h a t which i s r e l a t e d v e r b a l l y . T h i s would suggest t h a t s t u d i e s which c o n c e p t u a l i z e communication as broader than v e r b a l exchange are important i n the under-standing of the e f f e c t of the presence of the i l l c h i l d on s i b l i n g s . C r e a t i o n of s p e c i a l s t a t u s f o r the i l l c h i l d w i t h i n the f a m i l y system c o n s t i t u t e s a change i n the p a t t e r n of s i b l i n g r e l a t i o n s h i p s . Study should be d i r e c t e d at d i s c l o s i n g the comparative nature of s i b l i n g r e l a t i o n s h i p s i n f a m i l i e s where a c h i l d has a l i f e - t h r e a t e n i n g i l l n e s s and those where one does not e x i s t . - 91 -The i d e n t i f i c a t i o n of r e d e f i n i n g n o r m a l i t y as the core v a r i a b l e which accounts f o r the m a j o r i t y of the behavior i n t h i s data suggests a r e l a t i o n s h i p between the i n d i v i d u a l ' s d e f i n i t i o n of n o r m a l i t y and the coping p r o c e s s . The nature of t h i s r e l a t i o n s h i p should be e x p l o r e d . IMPLICATIONS FOR PRACTICE In the i n t r o d u c t i o n to t h i s r e p o r t r e f e r r a l was made to Orem's s e l f - c a r e concept and the n e c e s s i t y of understanding the s i b l i n g ' s p o i n t of view i n c a l c u l a t i n g the t h e r a p e u t i c s e l f - c a r e demand as a p a r t of determining the requirement f o r n u r s i n g . The c o n c e p t u a l i z a t i o n of the data i n t h i s study has r e i n f o r c e d t h a t n e c e s s i t y . The data has i n d i c a t e d the inadequacy of the s i b l i n g i n f o r m a t i o n about the i l l n e s s c o n d i t i o n . I n t e r p r e t i n g t h i s w i t h i n the framework f o r n u r s i n g d e s c r i b e d by Orem (1980), a s i t u a t i o n has a r i s e n which i s h e a l t h - r e l a t e d , and w i t h i n , which the s i b l i n g i s r e q u i r e d to f u n c t i o n d i f f e r e n t l y terms of h i s / h e r s e l f - c a r e a c t i o n s . He/she may have inadequate i n f o r m a t i o n to meet the new requirements. Consequently a s e l f c a r e d e f i c i t w i l l e x i s t . I f the nurse has the a b i l i t y o r knowledge to a s s i s t the i n d i v i d u a l to meet h i s / h e r s e l f -care requirements a need f o r n u r s i n g w i l l e x i s t . The data c o l l e c t e d i n t h i s study has demonstrated a need f o r n u r s i n g e x i s t s f o r s i b l i n g s of c h i l d r e n with cancer i n r e l a t i o n t o a s s e s s i n g a knowledge base and a c q u i r i n g knowledge which i s a component of s e l f - c a r e a b i l i t y . - 92 -The data has i n d i c a t e d t h a t s i b l i n g s of the i l l c h i l d are a c t i v e p a r t i c i p a n t s i n p h y s i c a l care as w e l l as i n the process of h e l p i n g the c h i l d t o l i v e with h i s i l l n e s s . I f the time spent with the i l l c h i l d i s an i n d i c a t o r of the q u a n t i t y of c a r e - t a k i n g and support a c t i v i t y , they have a much more important r o l e t o p l a y i n m a i n t a i n i n g the q u a l i t y of l i f e of the i l l c h i l d than do h e a l t h care workers. Nursing has a r e s p o n s i b i l i t y t o enhance the s i b l i n g ' s a b i l i t y to f u l f i l l t h i s r o l e by d i r e c t c o n t a c t with the s i b l i n g and by working with the p a r e n t ( s ) . T h i s study has r e i n f o r c e d t h a t the presence o f a l i f e -t h r e a t e n i n g i l l n e s s impacts on the whole f a m i l y and the f a m i l y members r e a c t i n d i v i d u a l l y and as a u n i t . The focus of n u r s i n g must then i n c l u d e the f a m i l y as a u n i t as w e l l as i n d i v i d u a l members. The success of the group s e s s i o n s as a technique f o r e l i c i t i n g s i b l i n g p e r c e p t i o n s would suggest group s e s s i o n s might be u t i l i z e d to encourage s i b l i n g s to share exper-i e n c e s . S i b l i n g s may l e a r n new c a r e t a k i n g and suppo r t i n g techniques i n such s e s s i o n s as w e l l as having an o p p o r t u n i t y to c l a r i f y concerns. The value of t h i s study r e s t s not i n the s p e c i f i c f i n d i n g s which are p a r t i c u l a r t o t h i s study but i n the admonishment t o nurses which a r i s e s from the c o n c e p t u a l i -z a t i o n of the data t o expand the scope of p r a c t i c e and r e s e a r c h to i n c l u d e the whole f a m i l y of the c h i l d with cancer. - 93 -REFERENCES Aamodt, A. M. "Examining Ethnography For Nurse Researchers." Western J o u r n a l of Nursing Research, 4(1982), 209-221. A g u i l e r a , D. C. and Messick, J . M. 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" S i b l i n g s of C h i l d r e n with C y s t i c F i b r o s i s : P e r c e p t i o n of the Impact of the Disease." C h i l d r e n ' s H e a l t h Care, 10 (1982), 116-120. H o l t , J . "The R i g h t of C h i l d r e n t o Informed Consent." In Research  on C h i l d r e n , ed. J . van Eys. B a l t i m o r e : U n i v e r s i t y Park Pr e s s , 1978. - 96 -Honigman, J . J . "Sampling i n Ethnographic F i e l d Work." In A Handbook of Method i n C u l t u r a l Anthropology, eds. R. N a r o l l and R. Cohen. New York: Columbia U n i v e r s i t y P r e s s , 1970. Horton, T. E. "Conceptual B a s i s f o r Nursing I n t e r v e n t i o n With Human Systems: F a m i l i e s . " In D i s t r i b u t i v e N ursing  P r a c t i c e : A Systems Approach t o Community Mental H e a l t h , eds. J . H a l l and B. Weaver. P h i l a d e l p h i a : J . B. L i p p i n c o t t Company, 1977 l i e s , J . P. " C h i l d r e n With Cancer: Healthy S i b l i n g s ' P e r c e p t i o n s During the I l l n e s s E x p erience." Cancer Nursing (October 1979), 371-377. Kagen-Goodheart, L. "Reentry: L i v i n g With .Childhood Cancer." American J o u r n a l of O r t h o p s y c h i a t r y , 47(1977), 651-659. Kantor, D. and Lehr, W. I n s i d e the Family. San F r a n c i s c o : Jossey-Bass P u b l i s h e r s , 1976. Kaplan, D. M.; G r o b s t e i n , R.; Fischman, S. E., "Family M e d i a t i o n of S t r e s s . " S o c i a l Work, 3(1973), 60-69. Kellerman, J . P s y c h o l o g i c a l Aspects of Cancer i n C h i l d r e n . S p r i n g f i e l d I l l i n o i s : C h a r l e s C. Thomas, 1980. Lavigne, J . V. "The S i b l i n g s of Childhood Cancer P a t i e n t s : P s y c h o l o g i c a l A s p ects." In The C h i l d With Cancer, eds. J . L. Schulman and M. J . Kupst. S p r i n g f i e l d : C h a r l e s C. Thomas, 1980. , and Ryan, M. 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" P e d i a t r i c s , 50(1972), 801-804. - 97 -Maxwell, E. K. and Maxwell, R. J . "Search and Research i n Ethnology: Continuous Comparative A n a l y s i s . " B e h a v i o r a l  Science Research, 15(1980), 192-243. MacElveen, P. M. " C r i t i c a l Issues i n Access to Data." In The  Nursing P r o f e s s i o n : Views Through the M i s t , ed. N. L. Chaska. New York: McGraw H i l l , 1978. Mechanic, D. " S o c i a l S t r u c t u r e and P e r s o n a l A d a p t a t i o n : Some Neglected Dimensions." In Coping and A d a p t a t i o n , eds. G. Coelho, D. A. Hamburg and J . E. Adams, New York: B a s i c Books, 1974. Murphy, L. B. "Coping, V u l n e r a b i l i t y and R e s i l i e n c e i n Childhood." In Coping and A d a p t a t i o n , eds, G. Coelho, D. A. Hamburgs, and J . E. Adams. New York: B a s i c Books, 1974. N i s b e t t , R. E. and Wilson, T. D. " T e l l i n g More Than We Can Know: V e r b a l Reports on Mental Processes." P s y c h o l o g i c a l Review, 84.(1977) , 231-259. Orem, D. N u r s i n g Concepts of P r a c t i c e , 2nd e d i t i o n . New York: McGraw H i l l Book Company, 1982. O i l e r , C. "The Phenomenological Approach i n Nursing Research." Nursing Research, 31(1982), 178-181 Peplau, H. "Theory: The P r o f e s s i o n a l Dimension." In Proceedings  F i r s t N u r s i n g Theory Conference. U n i v e r s i t y of Kansas M e d i c a l Centre, Department of Nursing E d u c a t i o n , March 1969. P i a g e t , J . and Inhe l d e r , B. The Psychology of the C h i l d . New York: B a s i c Books, 1969. P l e s s , T. B. and P i n k e r t o n , P. Chronic Childhood D i s o r d e r : Promoting P a t t e r n s of Adjustment. London: Henry Kempton 1975. Ragucci, A. "The Ethnographic Approach and Nursing Research." Nursing Research, 21(1972), 485-490. Ric h , J . I n t e r v i e w i n g C h i l d r e n and A d o l e s c e n t s . London: MacMillan Company, 1968. R i s t , R. C. "On the Means of Knowing: Q u a l i t a t i v e Research i n E d u c a t i o n . " New York U n i v e r s i t y E d u c a t i o n Q u a r t e r l y , (Summer, 1979), 17-21. S c h a c h t e l , H. G. "Moral and S p i r i t u a l Aspects of Research on C h i l d r e n . " In Research on C h i l d r e n , ed J . van Eys. B a l t i m o r e : U n i v e r s i t y Park P r e s s , 1978. - 98 -Schaveneveldt, J . D. and I h i n g e r , M. " S i b l i n g R e l a t i o n s h i p s i n the Family." In Contemporary T h e o r i e s About the  Family, ed. W. R. Burr. New York: The Free Press, 1979. Schulman, J . L. and Kupst, M. J . The C h i l d With Cancer. S p r i n g f i e l d : C h a r l e s C. Thomas, 1980. Schutz, A. "Some S t r u c t u r e s of the L i f e World." In Phenomenology and S o c i o l o g y : S e l e c t e d Readings, ed. T. Luckmann. Middlesex, England: Penguin Books L i m i t e d , 1966. and Luckmann, T. The S t r u c t u r e s of the L i f e World. London: Heinemann, 19 74. Share, L. "Family Communication i n the C r i s i s of a C h i l d ' s F a t a l I l l n e s s : A L i t e r a t u r e Review and A n a l y s i s . " Omega, 3 (1972) , 187-201. Sourkes, B. " S i b l i n g s of P e d i a t r i c Cancer P a t i e n t s . In P s y c h o l o g i c a l Aspects of Childhood Cancer, ed J . Kellerman. S p r i n g f i e l d : C h a r l e s Thomas, 1980. S p i n e t t a , J . B. "Communication P a t t e r n s i n F a m i l i e s D e a l i n g with L i f e - T h r e a t e n i n g I l l n e s s . In The C h i l d and Death, ed. J . S a h l e r . S t . L o u i s : C. V. Mosby Company, 1978. ; S p i n e t t a , P.; Jung, F.; and Schwartz, D. B. Emotional Aspects of Childhood Cancer and Leukemia: A  Handbook f o r Parents. San Diego: Leukemia S o c i e t y of America, 1976. S t e r n , P. N. "Grounded Theory Methodology: I t s Uses and Processes." Image, 12(1980) 20-23. S t r a u s s , A. L. Chronic I l l n e s s and the Q u a l i t y of L i f e . St. L o u i s : C. V. Mosby Company, 1975. T a y l o r , M. M. The Needs and Support Systems of S i b l i n g s i n F a m i l i e s With S e r i o u s l y 111 C h i l d r e n . Unpublished masters t h e s i s . U n i v e r s i t y of Washington, S e a t t l e , Washington, 1980. T a y l o r , S. The E f f e c t s of Chronic Childhood I l l n e s s e s Upon Well S i b l i n g s . Unpublished masters t h e s i s . V i r g i n i a Commonwealth U n i v e r s i t y , Richmond, V i r g i n i a , 1979. . "The E f f e c t of Chronic Childhood Ill-nesses Upon Well S i b l i n g s . " Maternal C h i l d N u r s i n g J o u r n a l (Spring 1980), 109-116. Tew, B. J . and Laurence, K. M. "Mothers, B r o t h e r s , and S i s t e r s of P a t i e n t s With Spina B i f i d a . " Developmental Medicine and  C h i l d Neurology, 15(1973). Supplement 29: 69-76. - 99 -van Eys, J . The Normally 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 Park Press, 1978. . Research on C h i l d r e n . B a l t i m o r e : U n i v e r s i t y Park P r e s s , 1977. , and S u l l i v a n , M. P. Status of the C u r a b i l i t y of Childhood Cancers. New York: Raven Press, 1980. Wilson, H. S. " L i m i t i n g I n t r u s i o n - S o c i a l C o n t r o l of O u t s i d e r s i n a H e a l i n g Community." Nursing Research, 26(1977), 103-111. - 100 -APPENDIX "A" PARENT'S CONSENT FORM I am a r e g i s t e r e d nurse and a graduate student i n n u r s i n g a t the U n i v e r s i t y of B r i t i s h Columbia. I am working on my master's t h e s i s which i s concerned with c h i l d r e n ' s p e r c e p t i o n of day to day l i v i n g when another c h i l d i n the f a m i l y i s being t r e a t e d f o r cancer. I f you agree t h a t your c h i l d ( c h i l d r e n ) may p a r t i c i p a t e i n t h i s study, I would l i k e t o t a l k t o those who are between 8 and 18 years of age and l i v i n g at home, e x c l u d i n g the c h i l d who i s under treatment. I would l i k e t o t a l k t o your c h i l d r e n i n d i v i d u a l l y or together, i f there i s more than one, depending on t h e i r p r e f e r e n c e . I would a n t i c i p a t e t h a t our t a l k would l a s t between 30 and 60 minutes. I f the c h i l d r e n are i n agreement and you are too, I may ask to speak with them again at a l a t e r date. I f you have not shared the d i a g n o s i s of cancer or leukemia with your c h i l d r e n , p l e a s e l e t me know, and I w i l l be c a r e f u l not to give them t h i s i n f o m r a t i o n . Through t h i s study, I would hope nurses can g a i n more i n f o r m a t i o n about the impact of s e r i o u s i l l n e s s on other c h i l d r e n i n the f a m i l y t h a t they can share with p a r e n t s . T h i s i n f o r m a t i o n would be u s e f u l i n understanding and i n - 102 -APPENDIX "B" CHILDREN'S CONSENT FORM Kat h i e McLaughlin has e x p l a i n e d to me t h a t she would l i k e t o t a l k t o me about what i t i s l i k e to l i v e with a br o t h e r or s i s t e r who i s s i c k , or has been s i c k , and s t i l l has t o see the doctor from time t o time. I have agreed t h a t she may tape our c o n v e r s a t i o n s . I understand t h a t I don't have to answer que s t i o n s t h a t I don't want t o answer and t h a t I can stop our t a l k s at any time. SIGNATURE: DATE: - 103 -APPENDIX "C" INTERVIEW SCHEDULE "As we have p r e v i o u s l y d i s c u s s e d , I am a nurse, i n t e r -e s t ed i n knowing about how you see t h i n g s from day to day dur i n g the time t h a t i s s i c k , needs to go to the doctor, or even be i n the h o s p i t a l , t a k i n g medicines and so on. " The remainder of the i n t e r v i e w w i l l be conducted as a s e r i e s of open-ended and probing q u e s t i o n s , the content o f which w i l l depend on the in t e r v i e w e e ' s response with an e f f o r t being made to cover the general areas l i s t e d below. The f i r s t q u e s t i o n w i l l r e l a t e t o a c u r r e n t l y s i g n i f i c a n t event i n the s i b l i n g ' s experience. GENERAL AREAS TO BE COVERED IN IDENTIFYING SIBLING'S PER-CEPTION OF DAY TO DAY LIVING: 1 ) A c t i v i t i e s ; 2) R e l a t i o n s h i p s ; .3) F e e l i n g s ; 4) I n t e r f e r e n c e s and A c t i v i t i e s ; 5) P o s i t i v e and negative aspects of having a c h i l d w i t h cancer i n the f a m i l y ; 6) I l l n e s s V a r i a b l e s . 

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