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UBC Theses and Dissertations

Parents' perceptions of their family's experience when they have a child awaiting corrective heart surgery Edwards, Sheila Jean 1987

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PARENTS' PERCEPTIONS OF THEIR FAMILY'S EXPERIENCE WHEN THEY HAVE A CHILD AWAITING CORRECTIVE HEART SURGERY By SHEILA JEAN EDWARDS B.S.N., 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 , 1976 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 S c h o o l o f N u r s i n g We a c c e p t t h i s t h e s i s as c o n f o r m i n g t o t h e r e q u i r e d s t a n d a r d THE UNIVERSITY OF B R I T I S H COLUMBIA O c t o b e r 1987 © S h e i l a J e a n E d w a r d s , 1987 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department of N T T R S T N G  The University of British Columbia 1956 Main Mall Vancouver, Canada V6T 1Y3 Date OCTOBER 8 r 198 7 DE-6(3/81) i i A b s t r a c t P a r e n t s ' P e r c e p t i o n s o f T h e i r F a m i l y ' s E x p e r i e n c e When They  Have a C h i l d A w a i t i n g C o r r e c t i v e H e a r t S u r g e r y The p u r p o s e o f t h i s p h e n o m e n o l o g i c a l s t u d y was t o d e t e r m i n e t h e m e a n i n g p a r e n t s g i v e t o t h e i r f a m i l y ' s e x p e r i e n c e when t h e y have a c h i l d a w a i t i n g c o r r e c t i v e h e a r t s u r g e r y . A s e c o n d a r y p u r p o s e was t o i d e n t i f y a p p r o p r i a t e i n t e r v e n t i o n s f o r n u r s e s who d e a l w i t h f a m i l i e s d u r i n g t h e t r a n s i t i o n p e r i o d , f r o m i n i t i a l d i a g n o s i s o f c o n g e n i t a l h e a r t d i s e a s e u n t i l a d m i s s i o n t o h o s p i t a l f o r c o r r e c t i v e h e a r t s u r g e r y . A c o n v e n i e n c e s a m p l e o f s i x c o u p l e s were i n t e r v i e w e d a t v a r i o u s t i m e s d u r i n g t h e i d e n t i f i e d t r a n s i t i o n p e r i o d , f o r a t o t a l o f 11 i n t e r v i e w s . An i n t e r v i e w g u i d e o f open-ended q u e s t i o n s p r o v i d e d some l o o s e s t r u c t u r e f o r t h e i n i t i a l i n t e r v i e w s . A n a l y s i s o f t h e v e r b a t i m t r a n s c r i p t i o n s b e gan c o n c u r r e n t l y w i t h d a t a c o l l e c t i o n and c o n t i n u e d d u r i n g t h e f o r m a l a n a l y t i c phase w i t h m e a n i n g u n i t s e m e r g i n g f r o m t h e d a t a . The p a r e n t s d e s c r i b e d f o u r f a c e t s o f t h e e x p e r i e n c e : d i a g n o s i s o f c o n g e n i t a l h e a r t d i s e a s e , a d j u s t i n g t o c a r i n g f o r c h i l d once home, l i v i n g w i t h a c h i l d w i t h a c h r o n i c c o n d i t i o n , and w a i t i n g f o r c o r r e c t i v e h e a r t s u r g e r y . Not o n l y d i d p a r e n t s t a l k a b o u t how t h e y f e l t d u r i n g t h e f o u r f a c e t s b u t t h e y a l s o d e s c r i b e d t h e r a n g e o f c o p i n g s t r a t e g i e s t h e y e m p l o y e d t h r o u g h t h e i r e x p e r i e n c e . I n i i i d i s c u s s i n g t h e s e f i n d i n g s w i t h i n t h e c o n t e x t o f o t h e r c h r o n i c i l l n e s s e x p e r i e n c e s i t became e v i d e n t t h a t p a r e n t s draw f r o m a common p o o l o f c o p i n g s t r a t e g i e s w h e t h e r t h e c h i l d i s i n a c h r o n i c o r more a c u t e phase o f an i l l n e s s . Most o f t h e p a r e n t s i n d i s c u s s i n g t h e i r o v e r a l l i m p r e s s i o n s o f t h e e x p e r i e n c e had n o t f o u n d t h e i r c h i l d ' s i l l n e s s t o be as d i s r u p t i v e t o f a m i l y l i f e as t h e y had f i r s t a n t i c i p a t e d . Those f a m i l i e s w i t h t h e most s y m p t o m a t i c i n f a n t s seemed t o have a p a r t i c u l a r need f o r an a l l i a n c e w i t h one h e a l t h c a r e p r o f e s s i o n a l t o s u p p o r t them t h r o u g h t h e t r a n s i t i o n p e r i o d . G e n e r a l l y , p a r e n t s d i d n o t spend a l o t o f t i m e d w e l l i n g on t h e c o r r e c t i v e s u r g e r y u n t i l c l o s e t o t h e a n t i c i p a t e d d a t e f o r t h a t e v e n t ; i n s t e a d t h e y e m p l o y e d v a r i o u s c o p i n g s t r a t e g i e s w h i c h a l l o w e d them to n o r m a l i z e t h e i r l i v e s . 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 w h i c h a r i s e f r o m t h e s e c o n c l u s i o n s a r e m u l t i p l e . O v e r a l l , n u r s e s must a s s e s s t h e m e a n i n g t h a t i n d i v i d u a l f a m i l i e s g i v e t o t h e i r e x p e r i e n c e , a s s i s t f a m i l i e s t o employ s u i t a b l e c o p i n g s t r a t e g i e s , and o f f e r s u p p o r t as n e c e s s a r y . G e n e r a l i m p l i c a t i o n s f o r n u r s i n g r e s e a r c h a r e i n t h e r e a l m o f s t u d i e s w h i c h w i l l f u r t h e r n u r s e s ' u n d e r s t a n d i n g o f t h e w a i t i n g p e r i o d f o r c o r r e c t i v e h e a r t s u r g e r y b o t h f r o m t h e p a r e n t s ' and t h e s i b l i n g s ' p e r s p e c t i v e . i v T a b l e o f C o n t e n t s A b s t r a c t 11 T a b l e o f C o n t e n t s i v L i s t o f T a b l e s v i i A c k n o w l e d g e m e n t s . v i i i CHAPTER 1: I n t r o d u c t i o n B a c k g r o u n d t o t h e P r o b l e m 2 T h e o r e t i c a l Framework 6 I n t r o d u c t i o n t o M e t h o d o l o g y 7 P u r p o s e o f t h e S t u d y 8 D e f i n i t i o n o f Terms 9 A s s u m p t i o n s 9 L i m i t a t i o n s 9 Summary 10 CHAPTER 2: R e v i e w o f S e l e c t e d L i t e r a t u r e I n t r o d u c t i o n 11 D i a g n o s i s o f a C o n g e n i t a l Anomaly 11 I m p a c t o f C h r o n i c I l l n e s s on t h e F a m i l y 15 I m p a c t o f C o n g e n i t a l H e a r t D i s e a s e on t h e F a m i l y . 18 W a i t i n g f o r S u r g e r y 21 W a i t i n g f o r C o r r e c t i v e H e a r t S u r g e r y 23 Summary 25 CHAPTER 3: M e t h o d o l o g y I n t r o d u c t i o n 26 S e l e c t i o n o f P a r t i c i p a n t s 26 C r i t e r i a f o r S e l e c t i o n 27 S e l e c t i o n P r o c e d u r e 28 C h a r a c t e r i s t i c s o f P a r t i c i p a n t F a m i l i e s 29 E t h i c a l C o n s i d e r a t i o n s 30 D a t a C o l l e c t i o n 31 D a t a A n a l y s i s 36 Summary 39 CHAPTER 4: P a r e n t s ' P e r c e p t i o n s o f T h e i r F a m i l y ' s E x p e r i e n c e I n t r o d u c t i o n 40 F a c e t s o f t h e E x p e r i e n c e 42 D i a g n o s i s o f C o n g e n i t a l H e a r t D i s e a s e 42 I n i t i a l R e a c t i o n s 42 U n c e r t a i n t y • 46 E x p l a i n i n g t o O t h e r s 49 P r e p a r i n g t o Take t h e I n f a n t Home 51 V A d j u s t i n g t o C a r i n g f o r C h i l d Once Home 53 U n c e r t a i n t y 54 I n t e r a c t i o n s w i t h H e a l t h C a r e P r o f e s s i o n a l s 57 L i v i n g w i t h a C h i l d w i t h a C h r o n i c C o n d i t i o n . 58 M a j o r A l t e r a t i o n s i n L i f e s t y l e 59 F e e d i n g D i f f i c u l t i e s 61 D w e l l i n g on " I t " 63 E x p l a i n i n g t o O t h e r s 64 U n c e r t a i n t y 66 C a r d i a c C a t h e t e r i z a t i o n 67 P a l l i a t i v e S u r g e r y 68 W a i t i n g f o r C o r r e c t i v e H e a r t S u r g e r y 73 U n c e r t a i n t y 73 Im p a c t o f P r e v i o u s E x p e r i e n c e 76 C o n t e m p l a t i n g R i s k s 79 A n t i c i p a t i n g S u r g e r y 80 E x p l a i n i n g t o O t h e r s 81 C o p i n g S t r a t e g i e s 83 T r u s t i n g H e a l t h C a r e P r o f e s s i o n a l s 83 S e e k i n g S u p p o r t 89 B e i n g V i g i l a n t 92 N o r m a l i z i n g 96 F o c u s i n g on t h e P r e s e n t 105 A n t i c i p a t i n g t h e F u t u r e 106 B e i n g H o p e f u l 115 O v e r a l l I m p r e s s i o n o f E x p e r i e n c e 123 Summary 127 CHAPTER 5: D i s c u s s i o n o f F i n d i n g s I n t r o d u c t i o n 129 F a c e t s o f t h e E x p e r i e n c e 130 D i a g n o s i s o f C o n g e n i t a l H e a r t D i s e a s e 130 I n i t i a l R e a c t i o n s 130 A d j u s t i n g t o C a r i n g f o r C h i l d Once Home 134 I n t e r a c t i o n s W i t h H e a l t h C a r e P r o f e s s i o n a l s 137 L i v i n g W i t h a C h i l d W i t h a C h r o n i c C o n d i t i o n 138 M a j o r A l t e r a t i o n s i n L i f e s t y l e 139 F e e d i n g D i f f i c u l t i e s 140 H o s p i t a l i z a t i o n s • 142 W a i t i n g f o r C o r r e c t i v e H e a r t S u r g e r y 144 C o n t e m p l a t i n g R i s k s 146 Im p a c t o f P r e v i o u s E x p e r i e n c e 148 A n t i c i p a t i n g S u r g e r y 148 Common Themes o f t h e F a c e t s o f t h e E x p e r i e n c e 149 U n c e r t a i n t y 149 E x p l a i n i n g t o O t h e r s 153 C o p i n g S t r a t e g i e s 154 T r u s t i n g H e a l t h C a r e P r o f e s s i o n a l s 156 S e e k i n g S u p p o r t 160 B e i n g V i g i l a n t 163 N o r m a l i z i n g 166 v i F o c u s i n g on t h e P r e s e n t 169 A n t i c i p a t i n g t h e F u t u r e 170 B e i n g H o p e f u l 174 O v e r a l l I m p r e s s i o n o f E x p e r i e n c e 177 Summary 179 F o o t n o t e s 181 CHAPTER 6: Summary, C o n c l u s i o n s and I m p l i c a t i o n s f o r Nur s i n g Summary 183 C o n c l u s i o n s and 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 . 185 I m p l i c a t i o n s f o r N u r s i n g E d u c a t i o n 192 I m p l i c a t i o n s f o r N u r s i n g R e s e a r c h 193 R e f e r e n c e s 196 A p p e n d i x A 205 A p p e n d i x B 206 A p p e n d i x C 207 A p p e n d i x D 209 A p p e n d i x E 210 v i i L i s t o f T a b l e s T a b l e I D e m o g r a p h i c D a t a 30 I I F a c e t s , F e e l i n g S t a t e s and C o p i n g S t r a t e g i e s 41 A c k n o w l e d g e m e n t s v i i i I w o u l d l i k e t o f i r s t o f a l l t h a n k t h e members o f my t h e s i s c o m m i t t e e , J a n e t E r i c k s e n and C a r o l e R o b i n s o n , who h e l p e d me t o l e a r n t h e r e s e a r c h p r o c e s s . They e n c o u r a g e d me t o s t r i v e f o r e v e r - h i g h e r l e v e l s o f p e r s o n a l u n d e r s t a n d i n g o f my d a t a and c l a r i t y i n c o n v e y i n g t h a t u n d e r s t a n d i n g t h r o u g h my w r i t i n g . I p a r t i c u l a r l y a p p r e c i a t e d t h e i r e n t h u s i a s t i c s u p p o r t and w i l l i n g n e s s t o accommodate t h e i r s c h e d u l e s t o my n e e d s . My f a m i l y and f r i e n d s d e s e r v e s p e c i a l t h a n k s . My p a r e n t s were a l w a y s t h e r e when I n e e d e d a "pep" t a l k o r a c h e e r i n g s e c t i o n . The e t e r n a l o p t i m i s m o f my y o u n g e r s i s t e r and b r o t h e r was a l w a y s r e f r e s h i n g and my o l d e r s i s t e r e n c o u r a g e d me f r o m a f a r . J o a n n e , my roommate, r e p e a t e d l y d e m o n s t r a t e d h e r u n d e r s t a n d i n g o f t h e t h e s i s e x p e r i e n c e . Many f e l l o w g r a d u a t e s t u d e n t s and o t h e r f r i e n d s h a v e a l s o shown t h e i r s u p p o r t . F i n a l l y , I w o u l d l i k e t o a c k n o w l e d g e t h e p a r e n t s who so g e n e r o u s l y s h a r e d t h e i r s t o r i e s w i t h me. A l s o , t h a n k s t o D r . M. P a t t e r s o n and D r . G. S a n d o r who p r o v i d e d a c c e s s t o t h e f a m i l i e s t h a t e n a b l e d me t o p u r s u e my r e s e a r c h q u e s t i o n . 1 CHAPTER 1 I n t r o d u c t i o n T h i s s t u d y i s an e x p l o r a t i o n o f p a r e n t s ' p e r c e p t i o n s o f t h e i r f a m i l y ' s e x p e r i e n c e when t h e y have a c h i l d a w a i t i n g c o r r e c t i v e h e a r t s u r g e r y . The s p e c i f i c t i m e p e r i o d t h a t i s e x p l o r e d i s t h e t r a n s i t i o n p e r i o d f r o m i n i t i a l d i a g n o s i s o f c o n g e n i t a l h e a r t d i s e a s e (CHD) u n t i l a d m i s s i o n t o h o s p i t a l f o r c o r r e c t i v e s u r g e r y . The i m p e t u s f o r t h i s s t u d y grew o u t o f t h e i n v e s t i g a t o r ' s c l i n i c a l e x p e r i e n c e . I n w o r k i n g w i t h f a m i l i e s o f c h i l d r e n w i t h CHD i n b o t h i n t e n s i v e c a r e u n i t ( I C U ) and ward s e t t i n g s , t h e i n v e s t i g a t o r g a i n e d a c e r t a i n u n d e r s t a n d i n g o f t h e f a m i l y ' s h o s p i t a l e x p e r i e n c e . However, a b r o a d e r u n d e r s t a n d i n g o f t h e i r o v e r a l l e x p e r i e n c e was d e r i v e d f r o m i n v o l v e m e n t o v e r a t h r e e y e a r p e r i o d w i t h a p a r e n t s u p p o r t g r o u p . I n t h i s g r o u p p a r e n t s t a l k e d more a b o u t i s s u e s r e l a t e d t o c a r i n g f o r t h e c h i l d a t home. When t h e d a t e f o r c o r r e c t i v e s u r g e r y was known, t h i s t h e n became t h e f o c u s o f d i s c u s s i o n . T h r o u g h t h i s i n v o l v e m e n t , i t became e v i d e n t t h a t t h e e x p e r i e n c e o f h a v i n g a c h i l d a w a i t i n g c o r r e c t i v e s u r g e r y i s m u l t i - f a c e t e d and c o m p l e x . T h e r e f o r e , t h e i n v e s t i g a t o r d e c i d e d t o e x p l o r e f u r t h e r how p a r e n t s make m e a n i n g o f t h e s e v a r i o u s a s p e c t s o f t h e i r f a m i l y ' s e x p e r i e n c e i n c l u d i n g h a v i n g t h e c h i l d a t home, m a k i n g c o n t a c t w i t h t h e h e a l t h c a r e s y s t e m , 2 and a c k n o w l e d g i n g t h a t t h e i r c h i l d w i t h CHD r e q u i r e s c o r r e c t i v e h e a r t s u r g e r y . The b a c k g r o u n d t o t h e p r o b l e m w i l l now be e x p l o r e d i n a c h r o n o l o g i c a l manner f o l l o w i n g t h e s e q u e n c e o f t h e i d e n t i f i e d t r a n s i t i o n p e r i o d . B a c k g r o u n d t o t h e P r o b l e m The i n c i d e n c e o f CHD i s a p p r o x i m a t e l y e i g h t c a s e s p e r 1000 l i v e b i r t h s ( S t a p l e t o n , 1 9 8 3 ) . "As t h e h e a r t has l o n g been r e c o g n i z e d as an o r g a n v i t a l t o l i f e , i t i s n o t s u r p r i s i n g t h a t a h i g h d e g r e e o f a p p r e h e n s i o n i s a r o u s e d when i t s f u n c t i o n i s t h r e a t e n e d " ( G l a s e r , H a r r i s o n & L y n n , 1964, p. 3 7 7 ) . A d i a g n o s i s o f CHD i s l i k e l y t o be made w i t h i n t h e f i r s t few da y s o f l i f e i f t h e i n f a n t has one o f a number o f d e f e c t s t h a t most o f t e n c a u s e e a r l y symptoms, f o r e x a m p l e , t r a n s p o s i t i o n o f t h e g r e a t v e s s e l s , c o a r c t a t i o n o f t h e a o r t a , and p u l m o n a r y a t r e s i a / s t e n o s i s ( M o l l e r & N e a l , 1 9 8 1 ) . I n one s t u d y i n t h e U.S., 43% of c a s e s o f CHD were d i a g n o s e d w i t h i n t h e f i r s t week o f l i f e ( F e l d t , A v a s t h e y , Y o s h i m a s u , K u r k l a n d , & T i t u s , 1 9 7 1 ) . T h i s p e r c e n t a g e w i l l v a r y d e p e n d i n g on t h e d i a g n o s t i c s k i l l o f t h e p h y s i c i a n s i n v o l v e d . When a p r o b l e m i s s u s p e c t e d s h o r t l y a f t e r b i r t h , t h e i n f a n t w i l l o f t e n have t o be t r a n s p o r t e d t o a t e r t i a r y c a r e c e n t r e f o r d e f i n i t i v e d i a g n o s i s and t r e a t m e n t . T h i s may mean s e p a r a t i o n o f t h e m o t h e r f r o m h e r baby and a l s o s e p a r a t i o n o f t h e p a r e n t s i f t h e f a t h e r f o l l o w s t h e i n f a n t t o t h e t e r t i a r y c a r e c e n t r e . Some i n f a n t s may have t o u n d e r g o c a r d i a c c a t h e t e r i z a t i o n a n d / o r p a l l i a t i v e s u r g e r y d u r i n g t h i s i n i t i a l h o s p i t a l i z a t i o n . " C a r d i a c c a t h e t e r i z a t i o n and s u r g e r y r e p r e s e n t t h e u l t i m a t e s t r a i n f o r i n f a n t s ' p a r e n t s . To s u b m i t t h e i r h e l p l e s s , m i n i s c u l e b e i n g t o t h e s e b o d i l y i n v a s i o n s u n n e r v e s them" ( N e i l l , 1970, p. 4 2 ) . The b i r t h o f any b a b y , h e a l t h y o r n o t , c r e a t e s change i n a f a m i l y and a l l f a m i l y members must make a d j u s t m e n t s f o r t h e new member t o be i n c o r p o r a t e d ( F r i e d m a n , 1 9 8 1 ) . T r a n s i t i o n a l s t r e s s i s i d e n t i f i e d by M i n u c h i n ( 1 9 7 4 ) as t h a t w h i c h o c c u r s when t h e r e i s an a d d i t i o n o r l o s s o f f a m i l y members. I f a baby i s b o r n w i t h a c o n g e n i t a l d e f e c t , t h e t r a n s i t i o n a l s t r e s s and p r o c e s s o f i n c o r p o r a t i o n t a k e on new d i m e n s i o n s . 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At t h a t t i m e , t h e y a r e s t i l l a d j u s t i n g t o h a v i n g a new f a m i l y member and p e r h a p s t a k i n g on t h e r o l e o f p a r e n t f o r 4 t h e f i r s t t i m e o n l y t o be f a c e d w i t h t h e news t h a t t h e i r i n f a n t has a p o t e n t i a l l y l i f e - t h r e a t e n i n g h e a r t d e f e c t . Many i n f a n t s w i t h c o m p l e x h e a r t d i s e a s e now s u r v i v e b e c a u s e o f i m p r o v e d d i a g n o s t i c t e s t i n g and s u r g i c a l t e c h n i q u e s ( C l a r e , 1 9 8 5 ) . Some o f t h e s e i n f a n t s have c o r r e c t i v e s u r g e r y i n t h e e a r l y n e o n a t a l p e r i o d . However, t h e r e a r e a l a r g e number who a r e managed m e d i c a l l y o r have a p a l l i a t i v e s u r g i c a l p r o c e d u r e t o s u s t a i n them u n t i l t h e y a r e c o n s i d e r e d b e t t e r s u r g i c a l r i s k s . As a r e s u l t , t h e s e c h i l d r e n s pend a p e r i o d o f t i m e a t home d u r i n g w h i c h m i l d t o s e v e r e symptoms o f CHD a r e e v i d e n t . C o r r e c t i v e c a r d i a c s u r g e r y o f i n c r e a s i n g c o m p l e x i t y i s now b e i n g p e r f o r m e d on v e r y young c h i l d r e n . The w a i t i n g p e r i o d f o r c o r r e c t i v e h e a r t s u r g e r y has become s h o r t e r as s u r g i c a l t e c h n i q u e s and p o s t - o p e r a t i v e m o n i t o r i n g have i m p r o v e d . However, t h e f a m i l y i s o f t e n l e f t w i t h t h e u n c e r t a i n t y o f n o t k n o w i n g e x a c t l y when t h e c o r r e c t i v e s u r g e r y w i l l be d o n e . The t i m i n g o f t h i s e v e n t d e p e n d s on how t h e c h i l d manages w i t h w h a t e v e r o t h e r i n t e r v e n t i o n s c a n be o f f e r e d i n t h e m e a n t i m e . Some o f t h e c o n c e r n s o f p a r e n t s h a v i n g a c h i l d w i t h CHD have been documented ( A p l e y , B a r b o u r , & W e s t m a c o t t , 1967; D ' A n t o n i o , 1976; D u n n i n g , 1984; G a r s o n , B e n s o n , I v l e r & P a t t o n , 1978; G l a s e r e t a l . , 1964; G u d e r m u t h , 1975; L i n d e , R a s o f , Dunn, & Rabb, 1966; M a x w e l l & Gane, 1962; P i n e l l i , 1 9 8 1 ) . However, t h e r e a r e l i m i t a t i o n s t o t h i s r e s e a r c h . F o r e x a m p l e , t h e t i m e p e r i o d p r i o r t o c o r r e c t i v e 5 s u r g e r y was n o t w e l l i d e n t i f i e d o r d e s c r i b e d and most s t u d i e s o n l y a s k e d f o r m o t h e r s ' p e r c e p t i o n s o f t h e e x p e r i e n c e . I n o u r p r e s e n t d e c a d e o f i n c r e a s e d m i x i n g o f t r a d i t i o n a l r o l e s , i t has become i m p o r t a n t t o e l i c i t t h e o p i n i o n s o f b o t h f a t h e r s and m o t h e r s . T h e r e a r e a l s o few s t u d i e s w h i c h c o n c e n t r a t e d on f a m i l i e s h a v i n g young c h i l d r e n . C o n s i d e r i n g t h e e a r l y age a t w h i c h most h e a r t s u r g e r y i s now b e i n g p e r f o r m e d , i t i s t h e e x p e r i e n c e s o f f a m i l i e s w i t h young c h i l d r e n w h i c h a r e i m p o r t a n t f o r n u r s e s t o u n d e r s t a n d , now and i n t h e f u t u r e . These l i m i t a t i o n s s e r v e t o l i m i t t h e u t i l i t y o f t h e f i n d i n g s f o r c u r r e n t n u r s i n g p r a c t i c e . N u r s e s a r e i n v o l v e d w i t h f a m i l i e s h a v i n g c h i l d r e n w i t h CHD a t many d i f f e r e n t s t a g e s d u r i n g t h e w a i t i n g p e r i o d f o r c o r r e c t i v e s u r g e r y . The n u r s e w o r k i n g i n a m a t e r n i t y s e t t i n g may have f i r s t c o n t a c t when CHD i s s u s p e c t e d . The n u r s e w o r k i n g i n a p e d i a t r i c t e r t i a r y c a r e c e n t r e may have c o n t a c t w i t h t h e s e f a m i l i e s on a number o f o c c a s i o n s i n c l u d i n g a d m i s s i o n s f o r : i n i t i a l d i a g n o s i s , m e d i c a l management, c a r d i a c c a t h e t e r i z a t i o n , and s u r g e r y , b o t h p a l l i a t i v e and c o r r e c t i v e . The n u r s e w o r k i n g on a p e d i a t r i c ward i n a community h o s p i t a l may a l s o have c o n t a c t i f t h e c h i l d i s a d m i t t e d t h e r e w i t h pneumonia o r c o n g e s t i v e h e a r t f a i l u r e . The community h e a l t h n u r s e may see t h e s e f a m i l i e s d u r i n g home v i s i t s and i n baby c l i n i c s . H e n c e, f a m i l i e s a r e p o t e n t i a l l y i n c o n t a c t w i t h many 6 d i f f e r e n t n u r s e s w i t h v a r y i n g l e v e l s o f k n o w l e d g e and s k i l l d u r i n g t h e c o u r s e o f t h e i r c h i l d ' s i l l n e s s . T h u s , t h e p r e s e n t s t u d y was d e s i g n e d t o e x p l o r e t h e e x p e r i e n c e o f f a m i l i e s h a v i n g a c h i l d w i t h CHD, a w a i t i n g c o r r e c t i v e h e a r t s u r g e r y . The i n f o r m a t i o n g a i n e d w i l l h o p e f u l l y be u t i l i z e d by n u r s e s and o t h e r h e a l t h c a r e p r o f e s s i o n a l s t o a s s i s t them i n p r o v i d i n g q u a l i t y f a m i l y - c e n t e r e d c a r e t o f a m i l i e s h a v i n g c h i l d r e n w i t h CHD. T h e o r e t i c a l Framework The UBC M o d e l f o r N u r s i n g : The F a m i l y p r o v i d e d t h e t h e o r e t i c a l f r a m e w o r k f o r t h i s s t u d y . I n t h i s M o d e l , t h e f a m i l y as c l i e n t i s " c o n c e p t u a l i z e d as a s o c i a l s y s t e m w i t h t h r e e s u b s y s t e m s , e a c h r e p r e s e n t i n g one f a m i l y n e e d . The f a m i l y a t t e m p t s t o meet t h e s e n e e d s by u s i n g a r a n g e o f t r a n s a c t i o n a l p a t t e r n s . I f t h e s e n e e d s a r e met, t h e f a m i l y i s i n s o c i a l s y s t e m b a l a n c e " (UBC M o d e l , May/1986, i n t r o d u c t i o n ) . N u r s i n g ' s f u n c t i o n i s i d e n t i f i e d as n u r t u r i n g f a m i l i e s d u r i n g t r a n s i t i o n p e r i o d s t o a s s i s t them " t o a t t a i n t h e i r g o a l s , a c h i e v e s t a b i l i t y and r e a c h o p t i m a l h e a l t h " (UBC M o d e l , May/1986, p. 1 ) . The b r o a d d e f i n i t i o n o f n u r t u r e , t o " f o s t e r ; p r o t e c t ; s u s t a i n ; and t e a c h " (UBC M o d e l , May/1986, p. 6) p r o v i d e s a f r a m e w o r k o n t o w h i c h k n o w l e d g e o f s p e c i f i c t r a n s i t i o n p e r i o d s , s u c h as t h e one u n d e r s t u d y h e r e , must be b u i l t . I t i s f i t t i n g t h a t The F a m i l y M o d e l be u s e d when c o n s i d e r i n g t h e young c h i l d a w a i t i n g c o r r e c t i v e h e a r t s u r g e r y . 7 A c h i l d who i s a t r i s k c r e a t e s many d i f f i c u l t i e s f o r t h e o t h e r f a m i l y members, i n c l u d i n g c r i s e s , g r i e f , and o t h e r r e a c t i o n s . R e g a r d l e s s o f i t s t i m i n g - - a t b i r t h o r i n e a r l y o r l a t e c h i l d h o o d - - a n y c h i l d - r e l a t e d r i s k s i t u a t i o n r e s u l t s i n a f a m i l y a t r i s k . ( H a l l J o h n s o n , 1986, p. 109) I n The UBC M o d e l f o r N u r s i n g : The F a m i l y , t r a n s i t i o n p e r i o d i s d e f i n e d as "a t i m e d u r i n g w h i c h an e x p e c t e d o r an u n e x p e c t e d e v e n t o c c u r s r e q u i r i n g t h e f a m i l y t o m o b i l i z e a n d / o r d e v e l o p i t s t r a n s a c t i o n a l p a t t e r n s t o meet f a m i l y n e e d s " (UBC M o d e l , May/1986, p. 6 ) . I n t h i s s t u d y , t h e u n e x p e c t e d e v e n t i s t h e d i a g n o s i s o f CHD and t h e t r a n s i t i o n p e r i o d i s t h e p e r i o d f r o m i n i t i a l d i a g n o s i s o f CHD u n t i l a d m i s s i o n t o h o s p i t a l f o r c o r r e c t i v e s u r g e r y . The n u r s e , i n a t t e m p t i n g t o n u r t u r e f a m i l i e s d u r i n g t h e i d e n t i f i e d t r a n s i t i o n p e r i o d , must u n d e r s t a n d t h e m e a n i n g o f t h e c h i l d ' s i l l n e s s t o t h a t f a m i l y . P h e n o m e n o l o g y i s t h e r e s e a r c h method w h i c h a l l o w e d t h e r e s e a r c h e r t o e x p l o r e t h e e x p e r i e n c e o f f a m i l i e s h a v i n g a c h i l d a w a i t i n g c o r r e c t i v e h e a r t s u r g e r y . The m e a n i n g o f t h e i l l n e s s t o t h e s e f a m i l i e s c o u l d t h e n be i d e n t i f i e d f r o m t h e d a t a . By u n d e r s t a n d i n g t h e i r e x p e r i e n c e , i n c l u d i n g any a c c o u n t s o f n u r s i n g ' s i n v o l v e m e n t , we c a n t a k e t h e f i r s t s t e p t o w a r d i d e n t i f y i n g how b e s t t o n u r t u r e t h e s e f a m i l i e s . I n t r o d u c t i o n t o M e t h o d o l o g y The p h e n o m e n o l o g i c a l a p p r o a c h o f q u a l i t a t i v e r e s e a r c h was u s e d t o a nswer t h e s t u d y ' s r e s e a r c h q u e s t i o n . Q u a l i t a t i v e r e s e a r c h i s t h e method i n w h i c h t h e c h a r a c t e r i s t i c s , a t t r i b u t e s and m e a n i n g s o f t h e phenomena 8 u n d e r s t u d y a r e i d e n t i f i e d , d o c u m e n t e d and i n t e r p r e t e d ( L e i n i n g e r , 1 9 8 5 ) . Hence, t h i s b r o a d m e t h o d o l o g i c a l c a t e g o r y i s u s e f u l when s t u d y i n g u n e x p l o r e d phenomena. The l i t e r a t u r e r e v i e w f o r t h i s s t u d y r e v e a l e d some a t t e m p t s a t u n d e r s t a n d i n g a s p e c t s o f t h e e x p e r i e n c e o f f a m i l i e s h a v i n g a c h i l d w i t h CHD. However, t h e i d e n t i f i e d t r a n s i t i o n p e r i o d was n o t w e l l i d e n t i f i e d o r e x p l o r e d and t h e p e r s p e c t i v e o f b o t h p a r e n t s was s e l d o m e l i c i t e d . P h e n o m e n o l o g y i s an i n d u c t i v e , d e s c r i p t i v e r e s e a r c h method w h i c h has t h e g o a l o f d e s c r i b i n g l i v e d e x p e r i e n c e f r o m t h e s u b j e c t i v e p e r s p e c t i v e o f t h e p e r s o n ( s ) who l i v e d i t (Omery, 1 9 8 3 ) . "The t a s k i s a l w a y s one o f l e a r n i n g how t h o s e i n v o l v e d i n t e r p r e t e d and gave m e a n i n g t o t h e s i t u a t i o n " ( R i s t , 1979, p. 2 0 ) . T h e r e f o r e , p h e n o m e n o l o g y was an a p p r o p r i a t e method f o r t h i s s t u d y i n w h i c h t h e r e s e a r c h e r w a n t e d t o c a p t u r e t h e m e a n i n g o f t h e e x p e r i e n c e o f h a v i n g a c h i l d w i t h CHD, a w a i t i n g c o r r e c t i v e h e a r t s u r g e r y . P u r p o s e o f t h e S t u d y T h i s s t u d y was an e x p l o r a t i o n o f t h e f a m i l y ' s e x p e r i e n c e d u r i n g t h e t r a n s i t i o n p e r i o d f r o m i n i t i a l d i a g n o s i s o f CHD u n t i l a d m i s s i o n t o h o s p i t a l f o r c o r r e c t i v e s u r g e r y . The m a j o r p u r p o s e o f t h e s t u d y was t o g a i n i n s i g h t , f r o m t h e p a r e n t s ' p e r s p e c t i v e , i n t o t h e e x p e r i e n c e o f f a m i l i e s d u r i n g t h e t r a n s i t i o n p e r i o d i n c l u d i n g any i n t e r a c t i o n s w i t h h e a l t h c a r e p r o f e s s i o n a l s , p o s i t i v e a n d / o r n e g a t i v e . A f u r t h e r p u r p o s e was t o i d e n t i f y 9 a p p r o p r i a t e i n t e r v e n t i o n s f o r n u r s e s i n t h e i r r o l e o f n u r t u r e r d u r i n g t h e i d e n t i f i e d t r a n s i t i o n p e r i o d . D e f i n i t i o n o f Terms C h i l d : m a l e o r f e m a l e who i s u n d e r t h r e e y e a r s o f age and h a s CHD r e q u i r i n g c o r r e c t i v e h e a r t s u r g e r y . P a r e n t s : b i o l o g i c a l p a r e n t s o f t h e c h i l d w i t h CHD who l i v e t o g e t h e r w i t h t h a t c h i l d . F a m i l y : t h e c h i l d w i t h CHD, h i s p a r e n t s , h i s s i b l i n g s and any o t h e r r e l a t i v e s who l i v e i n t h e same d w e l l i n g . C o r r e c t i v e h e a r t s u r g e r y : h e a r t s u r g e r y ( o p e n o r c l o s e d ) done t o c o r r e c t t h e u n d e r l y i n g d e f e c t ( s ) as o p p o s e d t o a p a l l i a t i v e p r o c e d u r e . T r a n s i t i o n p e r i o d : f o r t h e p u r p o s e s o f t h i s s t u d y , t h i s p e r i o d was t h e p e r i o d f r o m i n i t i a l d i a g n o s i s o f CHD u n t i l a d m i s s i o n t o h o s p i t a l f o r c o r r e c t i v e h e a r t s u r g e r y . A s s u m p t i o n s 1. When an i n f a n t w i t h CHD i s b o r n i n t o a f a m i l y some d e g r e e o f a d j u s t m e n t i s r e q u i r e d by t h e f a m i l y u n i t . 2. The e x p e r i e n c e o f h a v i n g a c h i l d a w a i t i n g c o r r e c t i v e h e a r t s u r g e r y h a s m e a n i n g f o r t h e p a r e n t s o f t h a t c h i l d . 3. P a r e n t s a r e a b l e t o a c c u r a t e l y r e c a l l and d e s c r i b e t h e i r e x p e r i e n c e and t h a t o f t h e i r f a m i l y d u r i n g t h i s t r a n s i t i o n p e r i o d . L i m i t a t i o n s 1. As t h i s i s an MSN t h e s i s , t h e s a m p l e s i z e was r e s t r i c t e d t o 12 p a r t i c i p a n t s ( s i x c o u p l e s ) , t h e r e f o r e l i m i t i n g t h e g e n e r a l i z a b i l i t y o f t h e r e s u l t s . 10 2. On l y p a r e n t s were i n t e r v i e w e d t h e r e f o r e l i m i t i n g the p e r c e p t i o n s o f the f a m i l i e s ' e x p e r i e n c e s to t h e s e two f a m i l y members. Summary T h i s i n t r o d u c t o r y c h a p t e r has p r o v i d e d the b a c k g r o u n d to the p r o b l e m , a d e s c r i p t i o n o f the t h e o r e t i c a l framework, m e t h o d o l o g i c a l t h e o r y , p u r p o s e , d e f i n i t i o n o f t e r m s , a s s u m p t i o n s and l i m i t a t i o n s . C h a p t e r 2 w i l l c o v e r a r e v i e w o f s e l e c t e d l i t e r a t u r e b ased on the t h e o r e t i c a l framework. 11 CHAPTER 2 R e v i e w o f S e l e c t e d L i t e r a t u r e I n t r o d u c t i o n The t h e o r e t i c a l f r a m e w o r k p r o v i d e d t h e c o n c e p t s w h i c h w i l l be e x p l o r e d i n t h i s c h a p t e r . These c o n c e p t s a r e : t h e u n e x p e c t e d e v e n t o f t h e d i a g n o s i s o f CHD, t h e t r a n s i t i o n p e r i o d f r o m i n i t i a l d i a g n o s i s o f CHD u n t i l a d m i s s i o n t o h o s p i t a l f o r c o r r e c t i v e s u r g e r y , and t h e e x p e c t e d e v e n t o f c o r r e c t i v e h e a r t s u r g e r y . T h i s s e l e c t e d r e v i e w o f t h e l i t e r a t u r e w i l l i n c l u d e b o t h e x p e r i e n t i a l l y and r e s e a r c h - b a s e d p u b l i c a t i o n s . B o t h t y p e s o f l i t e r a t u r e were r e v i e w e d i n an a t t e m p t t o u n d e r s t a n d t h e c o n c e p t s u n d e r l y i n g t h e s t u d y . B e c a u s e t h e r e was a d e a r t h o f r e c e n t r e s e a r c h l i t e r a t u r e s p e c i f i c to t h e i d e n t i f i e d t r a n s i t i o n p e r i o d , l i t e r a t u r e o f a more g e n e r a l n a t u r e was a l s o r e v i e w e d . T h u s , r e f e r e n c e w i l l be made to t h e g e n e r a l l i t e r a t u r e on t h e d i a g n o s i s o f any c o n g e n i t a l a n o m a l y , t h e i m p a c t o f any c h r o n i c i l l n e s s on t h e f a m i l y and w a i t i n g f o r any t y p e o f s u r g e r y . D i a g n o s i s o f a C o n g e n i t a l Anomaly T h i s s e c t i o n w i l l c o m b i n e r e f e r e n c e s t o what i s g e n e r a l l y known a b o u t p a r e n t s ' r e a c t i o n s t o t h e d i a g n o s i s o f v a r i o u s c o n g e n i t a l a n o m a l i e s w i t h what i s known a b o u t t h e i r r e a c t i o n s t o t h e d i a g n o s i s o f c a r d i a c a n o m a l i e s . I t w i l l a l s o i n c l u d e a b r i e f r e v i e w o f t h e s t r e s s o r s i n h e r e n t 12 i n t h e t r a n s i t i o n t o p a r e n t h o o d b e c a u s e when CHD i s d i a g n o s e d w i t h i n t h e f i r s t two months o f l i f e p a r e n t s a r e c o n c u r r e n t l y h a v i n g t o d e a l w i t h t h e r o l e t r a n s i t i o n s o f t h i s p e r i o d . R e s e a r c h has shown t h a t n e g a t i v e f e e l i n g s w h i c h a r e o f t e n i d e n t i f i e d by p a r e n t s as a c c o m p a n y i n g t h e d i a g n o s i s of a c o n g e n i t a l d e f e c t i n c l u d e g u i l t , i n a d e q u a c y , i r r i t a t i o n , d i s a p p o i n t m e n t ( G l a s e r e t a l , 1 9 6 4 ) , as w e l l as s a d n e s s , a n g e r , and a n x i e t y ( D r o t a r , B a s k i e w i c z , I r v i n , K e n n e l l , & K l a u s , 1 9 7 5 ) . I f t h e d i a g n o s i s f o l l o w s s h o r t l y a f t e r t h e b i r t h , t h e p a r e n t s have t o cope w i t h t h e l o s s o f t h e e x p e c t e d h e a l t h y b a b y . T h e r e f o r e , t h e y u s u a l l y need t o g r i e v e t h e i r l o s s b e f o r e t r y i n g t o i n c o r p o r a t e t h e new member i n t o t h e f a m i l y ( W a e c h t e r , 1 9 7 7 ) . A n g e r , a n a t u r a l r e a c t i o n t o l o s s , i s o f t e n d i s p l a c e d o n t o t h e n u r s e ( D r o t a r e t a l . , 1975; M e r c e r , 1977; W a e c h t e r , 1 9 7 7 ) . I n some c a s e s o f CHD t h e d i a g n o s i s may n o t be made u n t i l s e v e r a l weeks a f t e r t h e b i r t h . At t h i s p o i n t t h e i n f a n t i s a l r e a d y c o n s i d e r e d a member o f t h e f a m i l y b u t p a r e n t s s t i l l e x p e r i e n c e many o f t h e same e m o t i o n s as t h e y w o u l d have i f t h e d i a g n o s i s had been made s h o r t l y a f t e r b i r t h ( C l a r e , 1985; G l a s e r e t a l . , 1 9 6 4 ) . I t i s g e n e r a l l y a c k n o w l e d g e d t h a t p a r e n t s ' r e a c t i o n s o f s h o c k and d i s b e l i e f a t h e a r i n g t h e d i a g n o s i s o f any c o n g e n i t a l d e f e c t b l o c k t h e amount o f i n f o r m a t i o n t h e y ca n a b s o r b i n i t i a l l y ( B u r t o n , 1975; C l a r e , 1985; D r o t a r e t a l . , 1975; G a r s o n e t a l . , 1978; G o t t e s f e l d , 1 9 7 9 ) . D e n i a l 13 or d i s t o r t i o n o f i n f o r m a t i o n a r e c o p i n g b e h a v i o u r s s o m e t i m e s u s e d by p a r e n t s and may be s u i t a b l e i n t h e i n i t i a l p e r i o d a f t e r d i a g n o s i s o f a d e f e c t ( D r o t a r e t a l • , 1975; G i d d i n g & R o s e n t h a l , 1984; H o l a d a y , 1984; K u p s t , B l a t t e r b a u e r , Westman, S c h u l m a n , & P a u l , 1 9 7 7 ) . A c o n g e n i t a l h e a r t d e f e c t i s an i n v i s i b l e d e f e c t w h i c h may make i t e a s i e r f o r p a r e n t s t o use s u c h c o p i n g b e h a v i o u r s e s p e c i a l l y i f t h e c h i l d i s a s y m p t o m a t i c and l i t t l e m e d i c a l i n t e r v e n t i o n i s r e q u i r e d i n i t i a l l y ( G a r s o n e t a l . , 1978; K u p s t e t a l . , 1 9 7 7 ) . The e t i o l o g y o f CHD i s unknown i n o v e r 90% o f c a s e s ( N a d a s , 1 9 8 4 ) . I f t h e c a u s e o f an a n o m a l y i s n o t r e a d i l y known most p a r e n t s w i l l s e a r c h o u t a c a u s e ( H o r a n , 1982; S a h i n , 1978; W a e c h t e r , 1 9 7 7 ) . T h i s g i v e s p a r e n t s a f e e l i n g o f c o n t r o l b e c a u s e t h e y hope t o be a b l e t o p r e v e n t t h e a n o m a l y i n f u t u r e p r e g n a n c i e s ( H o r a n , 1 9 8 2 ) . However, i f no c a u s e c a n be c o n f i r m e d p a r e n t s s o m e t i m e s a t t r i b u t e t h e d e f e c t t o s o m e t h i n g h a v i n g no s c i e n t i f i c b a s i s ( H o r a n , 1 9 8 2 ) . I n t h e c a s e o f CHD t h e r e may be some u n c e r t a i n t y a b o u t t h e d e f i n i t i v e d i a g n o s i s a t f i r s t and t h u s p a r e n t s may r e a c t w i t h u n e a s i n e s s o r a n g e r ( K u p s t e t a l . , 1 9 7 7 ) . Once t h e s p e c i f i c d i a g n o s i s i s c o n f i r m e d , i n f a n t s w i t h h e a r t c o n d i t i o n s w i l l o f t e n r e q u i r e some t y p e o f m e d i c a l t r e a t m e n t a n d / o r s u r g e r y e a r l y o n . The d e c i s i o n r e g a r d i n g o p e r a t i o n f o r c o n g e n i t a l c a r d i a c d e f e c t s i s a l w a y s an i n d i v i d u a l d e c i s i o n w i t h m u l t i p l e f a c t o r s t o be c o n s i d e r e d , i n c l u d i n g c o m p l e x i t y o f t h e p r i m a r y l e s i o n , c o n s i d e r a t i o n o f 14 a s s o c i a t e d o r s e c o n d a r y d e f e c t s , p a t i e n t ' s age and s i z e , o t h e r m e d i c a l o r s u r g i c a l p r o b l e m s , and p s y c h o s o c i a l c o n s i d e r a t i o n s , w h i c h i n c l u d e b o t h p a t i e n t and f a m i l y f a c t o r s . On a t h e o r e t i c a l b a s i s , s u r g e r y w o u l d be most a p p r o p r i a t e f o r p s y c h o s o c i a l r e a s o n s i n t h e e a r l y n e o n a t a l p e r i o d . (Graham, 1984, p. 1275) S ometimes i n f o r m a t i o n r e g a r d i n g t h e t r e a t m e n t p l a n a c c o m p a n i e s t h e c o n f i r m a t i o n o f t h e d i a g n o s i s , o r i t may come l a t e r a f t e r a p e r i o d o f o b s e r v a t i o n o f t h e i n f a n t . I n D u n n i n g ' s s t u d y ( 1 9 8 4 ) many p a r e n t s e x p r e s s e d d i f f i c u l t y w i t h n o t k n o w i n g e x a c t l y when s u r g e r y w o u l d be d o n e . When CHD i s d i a g n o s e d w i t h i n t h e f i r s t two months o f l i f e t h e p a r e n t s h a v e t o cope w i t h t h i s u n e x p e c t e d e v e n t i n a d d i t i o n t o h a v i n g t o d e a l w i t h t h e t r a n s i t i o n t o p a r e n t h o o d . Many t h e o r i s t s v i e w t h e r o l e t r a n s i t i o n s n o r m a l l y r e q u i r e d a t t h i s t i m e as s t r e s s f u l ( D u v a l l , 1971; F r i e d m a n , 1981; M i n u c h i n , 1 9 7 4 ) . The t r a n s i t i o n t o p a r e n t h o o d t a k e s p l a c e o v e r t i m e and i n v o l v e s numerous c o p i n g s t r a t e g i e s ( M i l l e r & S o l l i e , 1 9 8 0 ) . P a r e n t i n g i s one o f t h e most d i f f i c u l t r o l e s a n yone u n d e r t a k e s . No o t h e r t a s k i s so c o m p l e x , so d i f f i c u l t o r so r i s k y . P a r e n t i n g i s a r o l e s u b j e c t t o r e c u r r e n t s t r e s s : t h e r e f o r e c r i s e s o c c u r w i t h r e g u l a r i t y and c e r t a i n t y . No p o p u l a t i o n i s a t g r e a t e r r i s k f o r d y s f u n c t i o n , and no p o p u l a t i o n d e s e r v e s t h e c o n s i d e r a t i o n o f h e a l t h c a r e g i v e r s more t h a n p a r e n t s and c h i l d r e n . ( M u r r a y , 1978, p. 4) F i r s t - t i m e p a r e n t s have t h e added s t r e s s o f n o t h a v i n g had e x p e r i e n c e w i t h a n o r m a l i n f a n t b e f o r e h a v i n g t o cope w i t h an i n f a n t w i t h CHD. S e v e r a l s t u d i e s have shown t h a t i n f a n t b e h a v i o u r o r temperament c a n a f f e c t t h e e a s e o f t h i s t r a n s i t i o n t o p a r e n t h o o d ( R o b e r t s , 1983; R u s s e l l , 1974; V e n t u r a , 1 9 8 2 ) . T h i s may have i m p l i c a t i o n s t h e n when 15 c o n s i d e r i n g t h e s o m e t i m e s i r r i t a b l e b e h a v i o u r o f t h e i n f a n t w i t h CHD. T h u s , d i a g n o s i s o f a c o n g e n i t a l d e f e c t e v o k e s a v a r i e t y o f e m o t i o n s i n p a r e n t s who had e x p e c t e d t o have o r t h o u g h t t h e y a l r e a d y had a h e a l t h y i n f a n t . B e c a u s e c a r d i a c d e f e c t s a r e i n v i s i b l e p a r e n t s may f i n d i t h a r d t o b e l i e v e t h e d i a g n o s i s . P a r e n t s o f i n f a n t s w i t h CHD f i n d f a c t o r s s u c h as t h e o f t e n unknown e t i o l o g y and u n c e r t a i n t y a b o u t t r e a t m e n t p l a n d i f f i c u l t t o d e a l w i t h . The a l r e a d y s t r e s s f u l t r a n s i t i o n t o p a r e n t h o o d i s f u r t h e r compounded when a d i a g n o s i s o f CHD i s made w i t h i n t h e f i r s t few months o f l i f e . A c h i l d w i t h t h e d i a g n o s i s o f CHD c a n be t e r m e d a c h r o n i c a l l y - i l l c h i l d u n t i l a f t e r c o r r e c t i v e s u r g e r y i s s u c c e s s f u l l y c o m p l e t e d . T h e r e f o r e , a r e v i e w o f t h e l i t e r a t u r e on t h e f a m i l y h a v i n g a c h r o n i c a l l y - i l l c h i l d w i l l add t o o u r u n d e r s t a n d i n g o f t h e e x p e r i e n c e . I m p a c t o f C h r o n i c I l l n e s s on t h e F a m i l y A l t h o u g h e a c h t y p e o f c h r o n i c i l l n e s s may have some s p e c i f i c r a m i f i c a t i o n s f o r t h e f a m i l i e s i n v o l v e d , t h e r e a r e a l s o g e n e r a l s o r t s o f i m p l i c a t i o n s f o r f a m i l i e s h a v i n g c h i l d r e n w i t h any t y p e o f c h r o n i c i l l n e s s . " I l l n e s s i n c h i l d h o o d has p h y s i c a l , p s y c h o s o c i a l and s o c i a l i m p l i c a t i o n s f o r t h e c h i l d and t h e f a m i l y " ( S a r g e n t , 1983, p. 9 8 2 ) . T h i s s e c t i o n , t h e n , w i l l d e a l w i t h how f a m i l i e s make m e a n i n g o f a c h i l d ' s c h r o n i c i l l n e s s , what h a r d s h i p s t h e y must f a c e and what s t r a t e g i e s t h e y use t o cope w i t h 16 t h o s e i l l n e s s e s . A l t h o u g h t h e i m p a c t o f a c h i l d ' s c h r o n i c i l l n e s s on t h e f a m i l y u n i t i s w i d e l y d e s c r i b e d i n t h e l i t e r a t u r e , many a c c o u n t s a r e e x p e r i e n t i a l l y b a s e d . The m e a n i n g o f a c h r o n i c i l l n e s s t o t h e f a m i l y i s i n f l u e n c e d by many f a c t o r s s u c h as c h a r a c t e r i s t i c s o f t h e e v e n t , p e r c e i v e d t h r e a t t o f a m i l y r e l a t i o n s h i p s , s t a t u s and g o a l s , r e s o u r c e s a v a i l a b l e t o t h e f a m i l y and p a s t e x p e r i e n c e w i t h t h e same o r s i m i l a r e v e n t s ( M a c V i c a r & A r c h b o l d , 1 9 7 6 ) . R e s e a r c h has shown t h a t t h e m e a n i n g o f t h e i l l n e s s t o t h e f a m i l y may be q u i t e d i f f e r e n t f r o m t h e p e r c e p t i o n s o f t h e h e a l t h c a r e p r o f e s s i o n a l s i n v o l v e d w i t h t h a t f a m i l y ( A n d e r s o n , 1 9 8 1 ) . P a t t e r s o n and M c C u b b i n ( 1 9 8 3 ) s u m m a r i z e d t h e f o l l o w i n g h a r d s h i p s e x p e r i e n c e d by f a m i l i e s h a v i n g a c h r o n i c a l l y - i l l c h i l d : s t r a i n e d f a m i l y r e l a t i o n s h i p s , m o d i f i c a t i o n s i n f a m i l y a c t i v i t i e s and g o a l s , t h e b u r d e n o f i n c r e a s e d t a s k s and t i m e c o m m i t m e n t s , i n c r e a s e d f i n a n c i a l b u r d e n , need f o r h o u s i n g a d a p t a t i o n , s o c i a l i s o l a t i o n , m e d i c a l c o n c e r n s , and g r i e v i n g a v a r i e t y o f l o s s e s o r a n t i c i p a t e d l o s s e s . E x p e r i e n c e has shown t h a t i f one p a r e n t has f u l l r e s p o n s i b i l i t y f o r c o o r d i n a t i n g a c h r o n i c a l l y - i l l c h i l d ' s c a r e t h e r e i s a d a n g e r t h a t an e x c e s s i v e l y c l o s e r e l a t i o n s h i p w i l l d e v e l o p w i t h t h a t p a r e n t ( T r a v i s , 1 9 7 6 ) . R e s e a r c h has s u p p o r t e d t h i s i d e a ( S a r g e n t , 1 9 8 3 ) . C o n s i s t e n t w i t h a s o c i a l s y s t e m m o del o f t h e f a m i l y , when one member i s i l l t h e n a l l members a r e a f f e c t e d , i n c l u d i n g s i b l i n g s . When p a r e n t s were a s k e d a b o u t t h e 17 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 on w e l l s i b l i n g s t h e y c i t e d a v a r i e t y o f p o s i t i v e and n e g a t i v e r e a c t i o n s ( L a v i g n e & R y a n , 1979; Menke, 1987; T a y l o r , 1 9 8 0 ) . A c c o r d i n g t o T a y l o r ( 1 9 8 0 ) , t h e n e g a t i v e e f f e c t s i n c l u d e f e e l i n g s o f i s o l a t i o n , d e p r i v a t i o n , e g o c e n t r i c i t y and i n f e r i o r i t y w h i l e t h e p o s i t i v e e f f e c t s a r e m a n i f e s t e d by e mpathy, c o o p e r a t i o n , r e w a r d s , i n c r e a s e d s e l f - e s t e e m and c o g n i t i v e m a s t e r y . 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 a r e r e q u i r e d t o a c c o m p l i s h t h r e e m a j o r t a s k s . They must be a b l e : 1. To u n d e r s t a n d and manage t h e i r c h i l d ' s i l l n e s s 2. To a s s i s t t h e i r c h i l d i n u n d e r s t a n d i n g and c o p i n g w i t h h i s / h e r i l l n e s s 3. To meet t h e n e e d s o f a l l f a m i l y members as w e l l as t h o s e o f t h e i l l c h i l d F o r p a r e n t s t o m a s t e r t h e s e t a s k s s u c c e s s f u l l y , t h e i r b a s i c n eeds f o r i n f o r m a t i o n , t r u s t , g u i d a n c e and s u p p o r t , and r e s o u r c e s must be met. ( H y m o v i c h , 1976, p. 13) I n s t r i v i n g t o meet t h e n e e d s o f t h e s i c k c h i l d b o t h p a r e n t s may h a v e t o expand t h e i r r o l e s i n s e v e r a l d i r e c t i o n s ( M a c V i c a r & A r c h i b a l d , 1 9 7 6 ) . I n o r d e r t o a c c o m p l i s h t h e f i r s t two t a s k s c i t e d a b o v e , 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 s e e k i n f o r m a t i o n f r o m h e a l t h c a r e p r o f e s s i o n a l s , f a m i l y members, o t h e r p a r e n t s , f r i e n d s and l i t e r a t u r e ( H o l a d a y , 1 9 8 4 ) . By l e a r n i n g a l l t h e y c a n a b o u t t h e i l l n e s s , p a r e n t s c a n c o n c e p t u a l i z e what t h e i r c h i l d ' s f u t u r e m i g h t be l i k e and t h u s l e s s e n t h e a n x i e t y c a u s e d by u n c e r t a i n t y ( M a t t s s o n , 1972 ) . S e e k i n g s u p p o r t f r o m w i t h i n and o u t s i d e o f t h e f a m i l y i s a n o t h e r c o p i n g s t r a t e g y u s e d by p a r e n t s . The p a r e n t s ' 18 a b i l i t y t o s u p p o r t e a c h o t h e r has been i d e n t i f i e d as i n t e g r a l t o l o n g - t e r m a c c e p t a n c e o f t h e c h r o n i c a l l y - i l l c h i l d ( D r o t a r e t a l . , 1975 ; H o l a d a y , 1 9 8 4 ) . P a r e n t s may l e a r n f o r t h e f i r s t t i m e how t h e i r p a r t n e r s cope w i t h g r a v e d i s a p p o i n t m e n t and l o s s , and i f t h e c o p i n g s t y l e s do n o t complement one a n o t h e r t h e r e may be p r o b l e m s ( S a b b e t h , 1 9 8 4 ) . F a m i l i e s g e n e r a l l y have some k i n d o f i n f o r m a l s o c i a l s u p p o r t n e t w o r k o f r e l a t i v e s and f r i e n d s . However, when t h e f a m i l y i s c o p i n g w i t h a c h r o n i c a l l y - i l l c h i l d and r e q u i r i n g l o n g - t e r m o r c o n t i n u o u s s u p p o r t t h i s n e t w o r k may become e x h a u s t e d ( N o r b e c k , 1 9 8 1 ) . A p a r e n t s u p p o r t g r o u p c a n augment t h i s n e t w o r k by h e l p i n g p a r e n t s t o u n d e r s t a n d t h e i r c h i l d ' s d i s e a s e and cope w i t h i t more e f f e c t i v e l y ( J o h n s o n , 1 9 8 2 ) . C h r o n i c i l l n e s s , by v i r t u e o f i t s l o n g d u r a t i o n , i s c h a r a c t e r i z e d by p r o l o n g e d s t r e s s and a l t h o u g h t h e a n x i e t y a s s o c i a t e d w i t h i t may be m i n i m i z e d d u r i n g d a i l y l i f e i t n e v e r t o t a l l y d i s a p p e a r s ( G o t t e s f e l d , 1 9 7 9 ) . T h e r e i s a s m a l l body o f somewhat o u t d a t e d l i t e r a t u r e d e a l i n g w i t h t h e f a m i l y h a v i n g a c h i l d w i t h CHD. T h i s l i t e r a t u r e w i l l now be a d d r e s s e d . I m p a c t o f C o n g e n i t a l H e a r t D i s e a s e on t h e F a m i l y CHD may be s i m i l a r t o o t h e r c h r o n i c i l l n e s s e s i n some r e s p e c t s b u t t h e r e seems t o be an e x t r a e l e m e n t o f c o n c e r n when a v i t a l o r g a n s u c h as t h e h e a r t i s i n v o l v e d ( G l a s e r e t a l • , 1 9 6 4 ) . B o t h t h e r a n g e o f p a r e n t a l c o n c e r n 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 h r o u g h o u t t h e t r a n s i t i o n p e r i o d and 19 r e p o r t s o f t h e i m p a c t o f t h e i l l n e s s on f a m i l y l i f e w i l l be r e v i e w e d i n t h i s s e c t i o n . A t t h e t i m e o f d i s c h a r g e f r o m h o s p i t a l , r e s e a r c h h a s shown some o f t h e c o n c e r n s o f p a r e n t s t o b e : a p p r e h e n s i o n a b o u t t h e b e h a v i o u r o f t h e i n f a n t , u n c e r t a i n t y a b o u t t h e d i a g n o s i s , a n x i e t y a b o u t symptoms and f e a r s o f d e a t h ( G l a s e r e t a l . , 1 9 6 4 ) . I n h e r s m a l l s a m p l e o f 1 0 , P i n e l l i ( 1 9 8 1 ) c o m p a r e d m o t h e r s ' c o n c e r n s r e g a r d i n g t h e c a r e - t a k i n g t a s k s o f n e w b o r n s w i t h CHD b e f o r e and a f t e r a s s u m i n g t h e i r c a r e . T h e r e was a s u b s t a n t i a l i n c r e a s e i n c o n c e r n a b o u t a number o f c a t e g o r i e s o f c a r e when t h e i n f a n t had b e e n home f o r one m o n t h . One o n g o i n g c o n c e r n o f m o t h e r s h a s p r o v e n t o be t h e i n f a n t s ' f e e d i n g d i f f i c u l t i e s ( D ' A n t o n i o , 1 9 7 6 ; G u d e r m u t h , 1 9 7 5 ; P i n e l l i , 1 9 8 1 ) . As w e l l as f e e d i n g d i f f i c u l t i e s , b e h a v i o u r s s u c h as i n c r e a s e d c r y i n g and i r r i t a b i l i t y h a v e b e e n shown t o s t r a i n t h e i n f a n t - m o t h e r r e l a t i o n s h i p ( D ' A n t o n i o , 1 9 7 6 ; G l a s e r e t a l . , 1 9 6 4 ; G u d e r m u t h , 1 9 7 5 ) . The i m p a c t o f t h e s e i n f a n t b e h a v i o u r s on p a r e n t s i s o f t e n d i s c u s s e d i n e x p e r i e n t i a l l y - b a s e d l i t e r a t u r e a s w e l l ( B i n d l e r , 1 9 7 9 ; C l a r e , 1 9 8 5 ; C l o u t i e r & M e a s e l , 1 9 8 2 ; C o n d o n , 1 9 7 3 ; H i g g i n s & K a s h a n i , 1 9 8 4 ; L o e f f e l , 1 9 8 5 ; P e r r i n & G e r r i t y , 1 9 8 4 ) . I n a d d i t i o n , c o n f l i c t b e t w e e n p a r e n t s may r e s u l t o v e r t h e b e s t way t o h a n d l e t h e i n f a n t ( N e i l l , 1 9 7 0 ) . A f e w o f t h e c a r e - t a k i n g t a s k s i n r e l a t i o n t o t h e i n f a n t h a v e a l r e a d y b e e n d e s c r i b e d . The t o d d l e r w i t h CHD 20 p r e s e n t s a n o t h e r s e t o f c o n c e r n s . P a r e n t s may o v e r p r o t e c t t h e i r c h i l d by u n n e c e s s a r i l y l i m i t i n g a c t i v i t y and a v o i d i n g d i s c i p l i n e ( L o e f f e l , 1985; M a x w e l l & Gane, 1 9 6 2 ) . E x p e r i e n c e s u g g e s t s t h a t t h e t o d d l e r who i s r e s t r i c t e d i n t h i s s t a g e o f d e v e l o p i n g autonomy may f e e l d e f e a t e d and become p a s s i v e , a p a t h e t i c , and c l i n g i n g ( P e r r i n & G e r r i t y , 1984) . A l a c k o f a p p r o p r i a t e d i s c i p l i n e c a n r e s u l t i n p o o r i m p u l s e c o n t r o l ( P e r r i n & G e r r i t y , 1 9 8 4 ) . Two m a j o r c h a n g e s i n f a m i l y l i f e a t t r i b u t a b l e t o t h e d i a g n o s i s o f CHD have been i d e n t i f i e d by r e s e a r c h e r s as e c o n o m i c s t r a i n and l i m i t a t i o n o f s o c i a l e n gagements ( A p l e y e t a l . , 1967; M a x w e l l & Gane, 1 9 6 2 ) . O t h e r c h a n g e s t h a t have been i d e n t i f i e d a r e i m p a i r e d p a r e n t a l h e a l t h ( B i n d l e r , 1979; G o t t e s f e l d , 1979; M a x w e l l & Gane, 1962) and t h e n e c e s s i t y f o r r e l o c a t i o n c l o s e r t o a t e r t i a r y c a r e h o s p i t a l ( A p l e y e t a l . , 1967; G o t t e s f e l d , 1 9 7 9 ) . T h e r e a r e a l s o c h a n g e s i n f a m i l y l i f e w h i c h a f f e c t t h e s i b l i n g s . I f t h e i l l n e s s i s d i a g n o s e d i n e a r l y i n f a n c y young s i b l i n g s have t o cope n o t o n l y w i t h t h e i n t r u s i o n o f t h i s new p e r s o n i n t o t h e i r l i v e s b u t a l s o w i t h t h e f a c t t h a t t h e i r p a r e n t s have t o s pend e x t r a t i m e w i t h t h e i n t r u d e r b e c a u s e o f t h e i l l n e s s ( C l a r e , 1 9 8 5 ) . D u r i n g h o s p i t a l i z a t i o n s o f t h e i l l c h i l d , s i b l i n g s f a c e s e p a r a t i o n f r o m f a m i l y members. F e e l i n g s o f h e l p l e s s n e s s and a l o n e n e s s may s u r f a c e f o r t h e s i b l i n g a t s u c h t i m e s (Bowen, 1985) . 21 An e l e m e n t o f p a r e n t a l c o n c e r n seems i n e v i t a b l e when a v i t a l o r g a n s u c h as t h e h e a r t i s a f f e c t e d and a c h i l d d i a g n o s e d w i t h CHD a l s o i n v a r i a b l y n e c e s s i t a t e s c e r t a i n c h a n g e s w i t h i n t h e f a m i l y . However, t h e c h i l d ' s c h r o n i c i l l n e s s may n o t d i s r u p t t h e s t a b i l i t y o f t h e f a m i l y u n i t . Two f a i r l y r e c e n t s t u d i e s f o u n d t h a t d i v o r c e was n o t more f r e q u e n t i n f a m i l i e s h a v i n g a c h i l d w i t h CHD as compared t o c o n t r o l g r o u p s ( F i n l e y , P u t h e r b o u g h , Cook, N e t l e y & Rowe, 1979; S i l b e r t , Newburger & F y l e r , 1 9 8 2 ) . I n f a c t , F i n l e y e t a l • ( 1979) showed t h a t t h e s t a b i l i t y o f t h e f a m i l i e s i n w h i c h t h e m a r r i a g e was i n t a c t p r i o r t o t h e d i a g n o s i s was a t a h i g h l e v e l . C o r r e c t i v e s u r g e r y i s t h e e v e n t t h a t p a r e n t s w a i t f o r t o r e s t o r e t h e i r c h i l d ' s h e a l t h . B e c a u s e t h e r e i s l i t t l e s p e c i f i c a l l y w r i t t e n w i t h r e g a r d t o w a i t i n g f o r h e a r t s u r g e r y , a g e n e r a l l o o k a t t h e l i t e r a t u r e on w a i t i n g f o r any k i n d o f s u r g e r y i s i n c l u d e d . T h i s w i l l encompass b o t h c h i l d r e n and a d u l t s a w a i t i n g s u r g e r y . W a i t i n g f o r S u r g e r y Most s t u d i e s i n v o l v i n g f a m i l i e s w i t h c h i l d r e n a w a i t i n g s u r g e r y f o c u s on p r e p a r a t i o n o f t h e c h i l d o f o v e r two y e a r s f o r m i n o r s u r g e r y , i n t h e i m m e d i a t e p r e o p e r a t i v e p e r i o d (Meng, 1980; V a r d a r o , 1978; V i s i n t a i n e r & W o l f e r , 1 9 7 5 ) . Meng ( 1 9 8 0 ) f o u n d t h a t many p a r e n t s , e s p e c i a l l y m o t h e r s , p e r c e i v e d t h e i r own a n x i e t y as b e i n g much g r e a t e r t h a n t h e i r c h i l d ' s . 22 I n c o n t e m p l a t i n g t h e p o p u l a t i o n u n d e r s t u d y , i t was d i f f i c u l t t o t h i n k o f o t h e r p o p u l a t i o n s w i t h c h a r a c t e r i s t i c s s i m i l a r enough t o c o n s i d e r t h e i r e x p e r i e n c e s as a d d i n g s i g n i f i c a n t l y t o o u r u n d e r s t a n d i n g . The p o p u l a t i o n w h i c h p r o b a b l y comes c l o s e s t a r e c h i l d r e n b o r n w i t h c h r o n i c r e n a l f a i l u r e who a r e a w a i t i n g r e n a l t r a n s p l a n t . However, no r e s e a r c h was f o u n d w h i c h e x c l u s i v e l y a d d r e s s e d s u c h a w a i t i n g p e r i o d . One s t u d y w h i c h d i d a d d r e s s t h e p a t i e n t o f o v e r 16 y e a r s a w a i t i n g r e n a l t r a n s p l a n t , n o t e d t h e " a b s e n c e o f n u r s i n g s t u d i e s r e l a t e d t o a p r o l o n g e d w a i t i n g p e r i o d p r i o r t o s u r g e r y , as i s t r u e w i t h t h e p a t i e n t a w a i t i n g a c a d a v e r i c r e n a l t r a n s p l a n t " (Weems, T a y l o r , & D a v i d s o n , 1983, p. 2 3 ) . A few s t u d i e s h a v e been done w i t h a d u l t s a w a i t i n g c o r o n a r y a r t e r y b y p a s s g r a f t s u r g e r y ( P i e p e r , L e p e c z y k , & C a l d w e l l , 1985; R a k o c z y , 1 9 7 7 ) . I n t h e P i e p e r e t a l . ( 1 9 8 5 ) s t u d y t h e s u b j e c t s had been w a i t i n g f r o m 7-76 days f o r s u r g e r y a t t h e t i m e o f t h e i n t e r v i e w . The m a j o r f i n d i n g s were t h a t t h e p e r c e i v e d e f f e c t o f w a i t i n g on t h e r e l a t i o n s h i p w i t h t h e s p o u s e / p a r t n e r and on l i f e i n g e n e r a l , d i m i n i s h e d t h e l o n g e r t h e p a t i e n t s had t o w a i t , and i n c r e a s e d as t h e i r c o n c e r n s a b o u t t h e s u r g e r y i n c r e a s e d . The w a i t i n g p e r i o d i n t h e R a k o c z y s t u d y ( 1 9 7 7 ) was l i m i t e d t o " t h e t h r e e day t i m e s p a n ( o r 72 h o u r s ) b e t w e e n t h e f i r s t i n t e r v i e w and c a r d i a c s u r g e r y " ( p . 2 8 2 ) . T h a t i n v e s t i g a t o r i d e n t i f i e d f o u r p h a s e s t h a t r e p r e s e n t e d t h e t h o u g h t s and f e e l i n g s o f t h o s e p a t i e n t s i n t h e w a i t i n g 23 p e r i o d : c o n f r o n t a t i o n , s e l f - r e f 1 e c t i o n , r e s o l u t i o n , and c o u n t d o w n ( R a k o c z y , 1 9 7 7 ) . I t i s c o n c e i v a b l e t h a t t h e e x p e r i e n c e o f t h o s e p a t i e n t s m i g h t have some s i m i l a r i t i e s t o t h e e x p e r i e n c e o f p a r e n t s whose c h i l d i s a w a i t i n g c o r r e c t i v e h e a r t s u r g e r y . W a i t i n g f o r C o r r e c t i v e H e a r t S u r g e r y CHD, u n l i k e many o t h e r c h r o n i c i l l n e s s e s u s u a l l y has an end p o i n t r e p r e s e n t e d by c o r r e c t i v e s u r g e r y , b e y o n d w h i c h l i f e f o r t h e i n v o l v e d c h i l d c a n be v i r t u a l l y n o r m a l . T h i s s e c t i o n w i l l h i g h l i g h t t h e f i n d i n g s o f t h e few s t u d i e s w h i c h have d e a l t w i t h t h e f a m i l y ' s e x p e r i e n c e o f w a i t i n g f o r c o r r e c t i v e h e a r t s u r g e r y . Most s t u d i e s were o f a r e t r o s p e c t i v e n a t u r e done a f t e r t h e c h i l d had a l r e a d y had t h e s u r g e r y o r e l s e o n l y t h e i m m e d i a t e p r e o p e r a t i v e p e r i o d was c o n s i d e r e d . S e v e r a l o f t h o s e s t u d i e s i n c l u d e d m i x e d g r o u p s o f p r e and p o s t - o p e r a t i v e p a t i e n t s ( A p l e y e t a l . , 1967; G a r s o n e t a l . , 1978; G l a s e r e t a l . , 1964; G u d e r m u t h , 1975; M a x w e l l & Gane, 1 9 6 2 ) . The age r a n g e o f t h e c h i l d r e n i n t h e s e s t u d i e s was b r o a d . Some o f t h e f i n d i n g s o f t h e s t u d i e s done i n t h e e a r l y 1960's have l i t t l e r e l e v a n c e t o d a y as t h e r e a r e many new s u r g i c a l p r o c e d u r e s a v a i l a b l e now, and t h e m o r t a l i t y r a t e s f o r t h o s e p r o c e d u r e s done i n t h e e a r l y 60 ' s h a v e d r o p p e d . A l s o , f a m i l i e s o f t h e 80's t e n d t o be s m a l l e r , more n u c l e a r , and when t h e r e a r e two p a r e n t s t h e y o f t e n b o t h w o r k . These c h a n g e s may h a v e r a m i f i c a t i o n s f o r t h e i m p a c t o f " w a i t i n g " on t h e f a m i l y . 24 Two a u t h o r s c o n t r i b u t e d c a s e s t u d i e s o f c h i l d r e n u n d e r g o i n g h e a r t s u r g e r y i n t h e l a t e 1960's ( B a r n e s , 1969; Moore & R o s e , 1 9 6 7 ) . I n b o t h i n s t a n c e s t h e r e were f o u r c h i l d r e n and t h e i r ages r a n g e d f r o m 2 1/2 t o 12 y e a r s . T h e i r o l d e r ages a t t h e t i m e o f s u r g e r y may p a r t i a l l y r e f l e c t t h e s t a g e o f d i a g n o s t i c and s u r g i c a l k n o w l e d g e and t e c h n o l o g y a t t h a t t i m e . B a r n e s ( 1 9 6 9 ) f o u n d t h a t " t h e p a r e n t s n e eded as much h e l p f r o m t h e n u r s e c l i n i c a l s p e c i a l i s t as t h e c h i l d r e n d i d i n o v e r c o m i n g t h e i r f e a r s " ( p . 1 2 ) . Moore & Rose ( 1 9 6 7 ) v i s i t e d t h r e e o f t h e f o u r f a m i l i e s a t home a few da y s p r i o r t o a d m i s s i o n , i n an a t t e m p t t o r e d u c e t h e a n x i e t y w h i c h t h e y had o b s e r v e d t o i n c r e a s e i n many o t h e r f a m i l i e s o v e r t h e few weeks j u s t p r i o r t o a d m i s s i o n . P a r e n t s s o m e t i m e s h a v e m i x e d f e e l i n g s a b o u t t h e w a i t i n g p e r i o d f o r h e a r t s u r g e r y ( G l a s e r e t a l . , 1964) and t h e i r f e e l i n g s h a v e been shown t o v a r y a c c o r d i n g t o w h e t h e r o r n o t t h e c h i l d i s s y m p t o m a t i c ( G a r s o n e t a l . , 1978; G l a s e r e t a l • , 1 9 6 4 ) . Some p a r e n t s may v i e w s u r g e r y as a s o l u t i o n t o t h e i r c u r r e n t s i t u a t i o n ( R o g e r s , F o r e h a n d , F u r e y , B a s k i n , F i n c h & J o r d a n , 1 9 8 4 ) . Two s t u d i e s were f o u n d w h i c h e x c l u s i v e l y a d d r e s s e d p a r e n t s ' c o n c e r n s i n t h i s t r a n s i t i o n p e r i o d ( D u n n i n g , 1984; P i n e l l i , 1 9 8 1 ) . A l t h o u g h " w a i t i n g f o r s u r g e r y " was n o t t h e f o c u s o f q u e s t i o n i n g , t h e t o p i c d i d come up. P i n e l l i ( 1 9 8 1 ) f o u n d t h a t m o t h e r s ' c o n c e r n s a b o u t i m p e n d i n g s u r g e r y i n c r e a s e d i n t h e one month p o s t - d i s c h a r g e v i s i t . D u n n i n g 25 ( 1 9 8 4 ) r e p o r t e d t h a t p a r e n t s ' c o n c e r n s v a r i e d a c c o r d i n g t o t h e c h i l d ' s age and d e v e l o p m e n t a l l e v e l . Summary From t h e l i t e r a t u r e , i t a p p e a r s t h a t t h e d i a g n o s i s o f a c o n g e n i t a l a n o m a l y r e s u l t s i n a v a r i e t y o f p a r e n t a l r e a c t i o n s i n c l u d i n g d i s b e l i e f w h i c h may be h e i g h t e n e d i f t h e a n o m a l y i s n o t r e a d i l y v i s i b l e , and a n g e r a b o u t t h e l o s t p e r f e c t c h i l d . When a d i a g n o s i s o f CHD i s c o n f i r m e d i n t h e f i r s t few months o f l i f e , t h e p a r e n t s a r e a l s o c o p i n g c o n c u r r e n t l y w i t h t h e s t r e s s o r s o f t h e t r a n s i t i o n t o p a r e n t h o o d . CHD, by v i r t u e o f i t s c h r o n i c n a t u r e , r e q u i r e s f a m i l i e s t o cope w i t h o n g o i n g c o n c e r n s and make numerous a d j u s t m e n t s i n t h e i r l i v e s . However, u n l i k e most o t h e r c h r o n i c i l l n e s s e s , t h e c h r o n i c i t y i s u s u a l l y t i m e l i m i t e d . C o r r e c t i v e h e a r t s u r g e r y r e p r e s e n t s t h e end p o i n t o f t h e i l l n e s s f o r most c h i l d r e n w i t h CHD. U n f o r t u n a t e l y t h o u g h , t h e e x a c t t i m i n g o f t h i s s u r g e r y i s o f t e n u n c e r t a i n w h i c h may be a c o n c e r n f o r p a r e n t s . L i t t l e has been w r i t t e n a b o u t t h e e x p e r i e n c e o f f a m i l i e s h a v i n g a young c h i l d a w a i t i n g c o r r e c t i v e h e a r t s u r g e r y . I t i s e v i d e n t t h a t i n o r d e r f o r h e a l t h c a r e p r o f e s s i o n a l s t o p r o v i d e q u a l i t y c a r e t o t h e s e f a m i l i e s , an u n d e r s t a n d i n g o f t h e m e a n i n g o f t h e i l l n e s s i s c r u c i a l . T h i s s t u d y was d e s i g n e d t o add t o t h a t u n d e r s t a n d i n g . 26 CHAPTER 3 Me t h o d o l o g y I n t r o d u c t i o n The t e r m m e t h o d o l o g y , i n i t s b r o a d s e n s e , r e f e r s t o t h e p r i n c i p l e s , p r o c e s s and p r o c e d u r e s w h i c h a r e u s e d t o a d d r e s s p r o b l e m s and s e e k a n s w e r s ( B o g d a n & T a y l o r , 1 9 7 5 ) . The method w h i c h g u i d e d t h i s s t u d y was a q u a l i t a t i v e one. The l a b e l q u a l i t a t i v e m e t h o d s . . . i s a t b e s t an u m b r e l l a t e r m c o v e r i n g an a r r a y o f i n t e r p r e t i v e t e c h n i q u e s w h i c h s e e k t o d e s c r i b e , d e c o d e , t r a n s l a t e , and o t h e r w i s e come t o t e r m s w i t h t h e m e a n i n g , n o t t h e f r e q u e n c y , o f c e r t a i n more o r l e s s n a t u r a l l y o c c u r r i n g phenomena i n t h e s o c i a l w o r l d . (VanMaanen, 1983, p. 9) P h e n o m e n o l o g y was t h e s p e c i f i c a p p r o a c h u s e d t o answer t h e s t u d y ' s q u e s t i o n . I n a p p l y i n g t h i s a p p r o a c h , t h e i n v e s t i g a t o r t r i e s t o see t h i n g s f r o m t h e p a r t i c i p a n t ' s p o i n t o f v i e w and t h u s u n d e r s t a n d t h e m e a n i n g he o r she a t t a c h e s t o t h e e x p e r i e n c e ( B o g d a n & T a y l o r , 1975; G i o r g i , 1985; Omery, 1983; R i s t , 1979) T h i s c h a p t e r w i l l d e s c r i b e how t h e p h e n o m e n o l o g i c a l a p p r o a c h g u i d e d t h e s t u d y i n c l u d i n g : s e l e c t i o n o f p a r t i c i p a n t s , e t h i c a l c o n s i d e r a t i o n s , d a t a c o l l e c t i o n and d a t a a n a l y s i s . S e l e c t i o n o f P a r t i c i p a n t s P u r p o s i v e o r p u r p o s e f u l a r e t h e t e r m s u s e d t o d e s c r i b e t h e s a m p l i n g t e c h n i q u e u s e d i n t h i s s t u d y ( D i e r s , 1979; P o l i t & H u n g l e r , 1 9 8 3 ) . I n t h i s m e t h o d , t h e p a r t i c i p a n t s a r e s e l e c t e d b e c a u s e t h e y have c e r t a i n c h a r a c t e r i s t i c s o r 27 k n o w l e d g e w h i c h a r e deemed i m p o r t a n t i n a n s w e r i n g t h e r e s e a r c h q u e s t i o n . The p a r e n t s s e l e c t e d f o r t h i s s t u d y a l l had c h i l d r e n w i t h CHD who were w a i t i n g f o r c o r r e c t i v e s u r g e r y , t h e r e f o r e m a k i n g them k n o w l e d g e a b l e a b o u t t h e e x p e r i e n c e o f a f a m i l y h a v i n g s u c h a c h i l d i n t h e t r a n s i t i o n p e r i o d b e t ween d i a g n o s i s and c o r r e c t i v e s u r g e r y . C r i t e r i a f o r S e l e c t i o n The s a m p l e c o n s i s t e d o f s i x f a m i l i e s who a l l met t h e f o l l o w i n g s e l e c t i o n c r i t e r i a , w i t h one e x c e p t i o n w h i c h w i l l be s u b s e q u e n t l y e x p l a i n e d . 1. The h e a r t d i s e a s e was d i a g n o s e d w i t h i n t h e f i r s t two months o f l i f e and i t was a n t i c i p a t e d t h a t t h e c h i l d w o u l d r e q u i r e c o r r e c t i v e h e a r t s u r g e r y b e f o r e t h e age o f t h r e e y e a r s . 2. The c h i l d had n o t had c o r r e c t i v e h e a r t s u r g e r y b u t may h a v e had a p a l l i a t i v e p r o c e d u r e d o n e . The o f t e n c o m p l e x c o m b i n a t i o n s o f d e f e c t s s o m e t i m e s r e q u i r e s i n i t i a l p a l l i a t i o n t o a l l o w t h e i n f a n t t i m e t o g a i n w e i g h t p r i o r t o c o r r e c t i v e s u r g e r y . A l t h o u g h i t was r e c o g n i z e d t h a t p a l l i a t i v e s u r g e r y m i g h t a l t e r t h e m e a n i n g a t t a c h e d t o t h e o v e r a l l e x p e r i e n c e , i t was i m p o r t a n t t o d e t e r m i n e what i n f l u e n c e t h i s s u r g e r y d i d have on t h e o v e r a l l e x p e r i e n c e . 3. The c h i l d w i t h CHD had no o t h e r l i f e - t h r e a t e n i n g c o n g e n i t a l d e f e c t s and was n o t m e n t a l l y h a n d i c a p p e d . 4. The p a r e n t s were a b l e t o c o n v e r s e f l u e n t l y i n E n g l i s h . 5. B o t h p a r e n t s were w i l l i n g t o be i n t e r v i e w e d . 6. The f a m i l y l i v e d i n t h e Lower M a i n l a n d of V a n c o u v e r . 28 The t h i r d c r i t e r i a was n o t met f o r one f a m i l y i n t h e s t u d y . A l a c k o f i n f o r m a t i o n c o n c e r n i n g t h e c h i l d ' s o t h e r p r o b l e m s l e d t o t h e i n v e s t i g a t o r ' s c o n t a c t i n g t h e f a m i l y u n d e r t h e a s s u m p t i o n t h a t t h e y met t h e c r i t e r i a . T h i s p a r t i c u l a r i n f a n t had Down's syndrome and H i r s c h s p r u n g ' s d i s e a s e as w e l l as an AV c a n a l c a r d i a c d e f e c t . However, b e c a u s e o f t h e i r e n t h u s i a s m t o d i s c u s s t h e i r e x p e r i e n c e and a d i f f i c u l t y i n o b t a i n i n g o t h e r p a r t i c i p a n t s , t h e i n v e s t i g a t o r e l e c t e d t o i n c l u d e them i n t h e s t u d y . S e l e c t i o n P r o c e d u r e A l l e t h i c a l c o n s i d e r a t i o n s were a d h e r e d t o as w i l l be s u b s e q u e n t l y d i s c u s s e d i n t h e s e c t i o n e n t i t l e d , " E t h i c a l C o n s i d e r a t i o n s . " Two p e d i a t r i c c a r d i o l o g i s t s a g r e e d t o s u p p l y t h e i n v e s t i g a t o r w i t h names o f f a m i l i e s who met t h e c r i t e r i a . A l e t t e r o f e x p l a n a t i o n ( s e e A p p e n d i x A) was s e n t t o t h e s e f a m i l i e s by t h e i n v e s t i g a t o r . As s t a t e d i n t h e l e t t e r , t h i s was f o l l o w e d by a phone c a l l f r o m t h e i n v e s t i g a t o r a p p r o x i m a t e l y 10 days l a t e r t o a s k i f t h e y were w i l l i n g t o p a r t i c i p a t e i n t h e s t u d y . A t t h a t t i m e f u r t h e r e x p l a n a t i o n was g i v e n a b o u t t h e s t u d y . The f i r s t f a m i l y t o be i n t e r v i e w e d a c t u a l l y phoned t h e i n v e s t i g a t o r t o i n d i c a t e t h e i r i n t e r e s t i n p a r t i c i p a t i n g b e f o r e t h e 10 days had p a s s e d . P r i o r t o s t a r t i n g t h e f i r s t i n t e r v i e w , a w r i t t e n c o n s e n t was o b t a i n e d f r o m b o t h p a r e n t s ( s e e A p p e n d i x B) a f t e r a s k i n g i f t h e y had any f u r t h e r q u e s t i o n s a b o u t t h e s t u d y . A c o p y o f t h e c o n s e n t f o r m , w h i c h a l s o e x p l a i n e d 29 t h e s t u d y , was l e f t w i t h them- D e m o g r a p h i c d a t a was c o l l e c t e d ( s e e A p p e n d i x C) a t t h e end o f t h e f i r s t i n t e r v i e w . The i n v e s t i g a t o r made i t c l e a r t h a t t h e p a r e n t s had t h e o p t i o n o f n o t a n s w e r i n g any q u e s t i o n s w i t h w h i c h t h e y f e l t u n c o m f o r t a b l e . One f a t h e r d i d n o t s t a t e h i s t y p e o f e m p l o y m e n t , w h i c h may have been an o v e r s i g h t , b u t was n o t p u r s u e d by t h e i n v e s t i g a t o r . O t h e r w i s e , a l l t h e q u e s t i o n s were a n s w e r e d . Two f a m i l i e s d e c l i n e d t o be i n t e r v i e w e d . I n b o t h i n s t a n c e s t h e i n v e s t i g a t o r s p o k e o n l y t o t h e m o t h e r s on t h e p hone. A l t h o u g h t h e m o t h e r s were w i l l i n g t o p a r t i c i p a t e , t h e f a t h e r s were n o t . I n t h e f i r s t c a s e , t h e i n f a n t was b o o k e d f o r c o r r e c t i v e s u r g e r y i n two weeks t i m e and t h e f a t h e r was t o o u p s e t t o t a l k a b o u t t h e e x p e r i e n c e t h a t c l o s e t o t h e a n t i c i p a t e d d a t e f o r s u r g e r y . I n t h e s e c o n d i n s t a n c e , t h e message r e l a y e d by t h e m o t h e r was t h a t t h e f a t h e r d i d n o t t h i n k he w o u l d have a n y t h i n g t o s a y on t h e sub j ec t . C h a r a c t e r i s t i c s o f P a r t i c i p a n t F a m i l i e s S i x m a r r i e d c o u p l e s h a v i n g a c h i l d w i t h CHD p a r t i c i p a t e d i n t h e s t u d y . A l l were C a u c a s i a n and f i v e c o u p l e s were C a n a d i a n b o r n and E n g l i s h - s p e a k i n g ; one c o u p l e had e m i g r a t e d f r o m Norway and were b i l i n g u a l ( s e e T a b l e I f o r more d e t a i l e d d e m o g r a p h i c d a t a a b o u t t h e s e f a m i l i e s ) . 30 T a b l e I D e m o g r a p h i c D a t a P a r e n t ' s E d u c a t i o n Employment F a m i l y Income S i b l i n g s Age B e f o r e B i r t h / N o w No . / Age M 27 g r a d e 12 F.T./none 1. $40-49,999 none F 29 g r a d e 12 F.T.  M 32 c o l l e g e F.T./E.L. 2. $40-49,999 1/3 y r s . F 33 c o l l e g e F.T.  M 29 g r a d e 12 F.T./P.T. 3. $40-49,999 1/3 y r s . F 29 c o l l e g e F.T.  M 33 g r a d e 12 F.T./P.T. 4. >$50,000 none F 31 g r a d e 12 F.T.  M 28 c o l l e g e none 5. >$50,000 1/5 y r s . F 32 c o l l e g e F.T.  M 26 g r a d e 12 none 6. $10-19,999 1/5 y r s . F 29 g r a d e 12 F.T.  No t e . M = m o t h e r F = f a t h e r F.T. = f u l l - t i m e P.T. = p a r t - t i m e E.L. = e x t e n d e d l e a v e The c h i l d r e n w i t h CHD a l l had t h e i r c o n d i t i o n s d i a g n o s e d w i t h i n t h e f i r s t week o f l i f e . They had c o m p l e x c a r d i a c l e s i o n s r e q u i r i n g v a r i o u s t y p e s o f m e d i c a l and s u r g i c a l i n t e r v e n t i o n s , ( s e e A p p e n d i x E f o r more d e t a i l e d i n f o r m a t i o n ) . E t h i c a l C o n s i d e r a t i o n s The a p p r o v a l o f 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 ' s B e h a v i o u r a l S c i e n c e s S c r e e n i n g C o m m i t t e e and t h e I n - H o s p i t a l R e s e a r c h R e v i e w C o m m i t t e e were o b t a i n e d p r i o r 31 t o d a t a c o l l e c t i o n . The r i g h t s o f t h e p a r t i c i p a n t s were s a f e g u a r d e d b y : 1. The i n v e s t i g a t o r e x p l a i n e d t h e s t u d y p r i o r t o o b t a i n i n g w r i t t e n c o n s e n t . 2. The w r i t t e n c o n s e n t c l e a r l y s t a t e d t h a t t h e p a r e n t s were u n d e r no o b l i g a t i o n t o p a r t i c i p a t e , t h e y c o u l d w i t h d r a w a t any t i m e , t h e y c o u l d r e f u s e t o a nswer q u e s t i o n s and t h e y c o u l d r e q u e s t e r a s u r e o f t h e t a p e o r any p o r t i o n o f t h e t a p e ( s e e A p p e n d i x B ) . 3. The p a r e n t s were g i v e n a c o p y o f t h e c o n s e n t t o k e e p . 4. The i n v e s t i g a t o r m a i n t a i n e d c o n f i d e n t i a l i t y by u s i n g a code t o i d e n t i f y t h e t r a n s c r i p t s o f t h e r e c o r d e d m a t e r i a l o n l y t o h e r . 5. The t a p e s were e r a s e d once t h e s t u d y was c o m p l e t e . 6. The p o t e n t i a l b e n e f i t s o f t h e s t u d y were o u t l i n e d i n t h e p a r t i c i p a n t i n f o r m a t i o n l e t t e r ( s e e A p p e n d i x A ) . D a t a C o l l e c t i o n The p r o c e s s e s o f d a t a c o l l e c t i o n and d a t a a n a l y s i s w i l l be d e s c r i b e d s e p a r a t e l y i n t h i s t e x t t o e n h a n c e c l a r i t y f o r t h e r e a d e r . However, i t i s i m p o r t a n t t o n o t e t h a t " t h e r e i s no c l e a r - c u t l i n e b e t w e e n d a t a c o l l e c t i o n and a n a l y s i s " ( G l a s e r & S t r a u s s , 1966, p. 57) i n q u a l i t a t i v e r e s e a r c h . I n s t e a d , t h e two p r o c e s s e s were i n t e r t w i n e d f o r t h e p e r i o d o f d a t a c o l l e c t i o n . I n t e n s i v e i n t e r v i e w s were c a r r i e d o u t i n t h e homes o f t h e p a r t i c i p a n t s . F o r t h e f i r s t - r o u n d i n t e r v i e w s an i n t e r v i e w g u i d e o f o p e n - e n d e d q u e s t i o n s ( s e e A p p e n d i x D) 32 p r o v i d e d some l o o s e s t r u c t u r e . The UBC M o d e l f o r N u r s i n g : The F a m i l y p r o v i d e d t h e f r a m e w o r k f o r t h i s g u i d e w h i l e t h e c o n t e n t o f t h e q u e s t i o n s a r o s e f r o m b o t h t h e a v a i l a b l e l i t e r a t u r e r e v i e w e d i n c h a p t e r 2 o f t h i s t h e s i s and t h e i n v e s t i g a t o r ' s p r i o r e x p e r i e n c e w i t h f a m i l i e s d u r i n g t h e s t a t e d t r a n s i t i o n p e r i o d . The f i r s t - r o u n d i n t e r v i e w s were i n i t i a t e d w i t h t h e b r o a d o v e r a l l q u e s t i o n , "what has y o u r f a m i l y ' s e x p e r i e n c e been h a v i n g a c h i l d w i t h CHD, a w a i t i n g c o r r e c t i v e h e a r t s u r g e r y ? " O t h e r q u e s t i o n s were a s k e d t o e i t h e r c l a r i f y what t h e p a r e n t s had s a i d o r t o f u r t h e r t h e i n v e s t i g a t o r ' s u n d e r s t a n d i n g o f a p a r t i c u l a r a s p e c t o f t h e e x p e r i e n c e b e i n g d i s c u s s e d . R e f l e c t i v e s t a t e m e n t s e n s u r e d t h a t t h e a c c o u n t s were v a l i d a t e d as t h e s t o r y u n f o l d e d . The q u e s t i o n s i n t h e i n t e r v i e w g u i d e were a s k e d i f t h o s e p a r t i c u l a r a s p e c t s o f t h e e x p e r i e n c e were n o t d i s c u s s e d as a n a t u r a l p a r t o f t h e c o n v e r s a t i o n . G e n e r a l l y , t h e s e a s p e c t s o f t h e e x p e r i e n c e were d i s c u s s e d by t h e p a r e n t s w i t h o u t i n i t i a t i o n by t h e i n v e s t i g a t o r . A t o t a l o f 11 i n t e r v i e w s were c o n d u c t e d w i t h t h e s i x c o u p l e s . The i n t e r v i e w s l a s t e d f r o m 25-75 m i n u t e s f o r a t o t a l o f 7 h o u r s , 37 m i n u t e s o f t a p e d i n t e r v i e w . The i n t e n t was t o i n t e r v i e w a l l f a m i l i e s m u l t i p l e t i m e s b u t t h e i n v e s t i g a t o r e l e c t e d t o do a s i n g l e i n t e r v i e w w i t h one o f t h e c o u p l e s who had v e r y l i t t l e t o s a y . Two i n t e r v i e w s were c o n d u c t e d w i t h e a c h o f t h e o t h e r f i v e c o u p l e s . 33 The i n t e r v i e w s o c c u r r e d a t a v a r i e t y o f p o i n t s d u r i n g t h e t r a n s i t i o n p e r i o d , d e p e n d i n g upon when t h e names were o b t a i n e d f r o m t h e c a r d i o l o g i s t s . A l l f i r s t i n t e r v i e w s were done a t l e a s t s i x weeks a f t e r t h e i n i t i a l d i a g n o s i s . The i n v e s t i g a t o r had hoped t o do a l l t h e f i r s t - r o u n d i n t e r v i e w s b e f o r e i n i t i a t i n g t h e s e c o n d - r o u n d i n o r d e r t o l o o k f o r themes a c r o s s a l l t h e a c c o u n t s . However, t h i s became i m p o s s i b l e b e c a u s e o f t h e a n t i c i p a t e d d a t e s o f c o r r e c t i v e s u r g e r y and t h e d i f f i c u l t y i n o b t a i n i n g p a r t i c i p a n t s . As a r e s u l t , t h e i n t e r v i e w s c h e d u l e was as f o l l o w s : 1A, 2A, 2B, 3A, I B , 4A, 5A, 6A, 5B, 4B, and 6B (A = i n t e r v i e w 1, B = i n t e r v i e w 2 ) . A l l o f t h e i n t e r v i e w s were t a p e - r e c o r d e d . F i e l d & Morse ( 1 9 8 5 ) s u g g e s t p l a c i n g t h e t a p e r e c o r d e r o u t o f s i g h t t o e n a b l e t h e p a r t i c i p a n t s t o f o r g e t a b o u t i t and t h u s i n t e r a c t n o r m a l l y . T h e r e f o r e when p o s s i b l e , t h e t a p e r e c o r d e r was p l a c e d on t h e f l o o r u n d e r a t a b l e so t h a t o n l y t h e m i c r o p h o n e was v i s i b l e on t h e t a b l e . However, none o f t h e p a r e n t s commented on t h e p r e s e n c e o f t h e t a p e r e c o r d e r as h a v i n g any e f f e c t on t h e d i s c u s s i o n . T h e r e were no r e q u e s t s t o e i t h e r s t o p t a p e r e c o r d i n g o r t o e r a s e a p o r t i o n o f t h e c o n v e r s a t i o n . I n f a c t , one m o t h e r r e c a l l e d s o m e t h i n g a b o u t t h e e x p e r i e n c e o n c e t h e t a p e had been t u r n e d o f f and h e r h u s b a n d s u g g e s t e d t h a t t h e i n v e s t i g a t o r m i g h t want t o t u r n t h e t a p e b a c k o n . T h i s was done w i t h t h e m o t h e r ' s p e r m i s s i o n . 34 The p a r e n t s were t o l d t h a t t h e i n v e s t i g a t o r w a n t e d t o h e a r a b o u t t h e i r e x p e r i e n c e , a n y t h i n g t h a t was i m p o r t a n t t o them, and w o u l d n o t a s k a l o t o f s p e c i f i c q u e s t i o n s . W i t h t h e e x c e p t i o n o f t h e f a m i l y who were i n t e r v i e w e d o n l y o n c e , t h e p a r e n t s seemed q u i t e e a g e r t o t a l k a b o u t t h e i r e x p e r i e n c e . I n f a c t , s e v e r a l o f them s p e n t some t i m e b e t w e e n t h e i n t e r v i e w s t r y i n g t o t h i n k o f o t h e r a s p e c t s o f t h e e x p e r i e n c e t h a t t h e y w a n t e d t o s h a r e w i t h t h e i n v e s t i g a t o r . I f t h e p a r e n t s a s k e d q u e s t i o n s a b o u t a c h i l d ' s u p c o m i n g h o s p i t a l i z a t i o n , t h e s e were d e f e r r e d t o t h e end o f t h e two i n t e r v i e w s and a p p r o p r i a t e i n f o r m a t i o n g i v e n t h e n o r t h e y were r e f e r r e d t o a n o t h e r s o u r c e . A l l t h e i n t e r v i e w s b u t one were c o n d u c t e d i n t h e e v e n i n g t o g i v e t h e p a r e n t s an o p p o r t u n i t y t o s e t t l e t h e i r c h i l d r e n i n bed f o r t h e n i g h t b e f o r e t h e i n v e s t i g a t o r ' s a r r i v a l . H owever, on o c c a s i o n , t h e e l d e r s i b l i n g s made an a p p e a r a n c e . A l l o f t h e c h i l d r e n w i t h h e a r t d i s e a s e were p r e s e n t f o r p a r t o f a t l e a s t one i n t e r v i e w and t h e p a r e n t s t o o k t u r n s e n t e r t a i n i n g them. The t a p e r e c o r d e r was a t t i m e s t u r n e d o f f t o a f f o r d t h e p a r e n t s t h e o p p o r t u n i t y t o l e a v e t h e room t o t e n d t o t h e i r c h i l d ( r e n ) ' s n e e d s . T h e r e was n e v e r any p r o b l e m c o n t i n u i n g t h e i n t e r v i e w s once t h e c h i l d ( r e n ) had been l o o k e d a f t e r . At t h e end o f t h e f i r s t i n t e r v i e w , t h e r a t i o n a l e was g i v e n f o r d o i n g a n o t h e r one. The i n v e s t i g a t o r e x p l a i n e d t h a t t h e f i r s t i n t e r v i e w w o u l d be t r a n s c r i b e d and r e a d t o d e t e r m i n e what f u r t h e r v a l i d a t i o n was r e q u i r e d . T h u s , t h e 35 s e c o n d i n t e r v i e w w o u l d i n c o r p o r a t e a summary o f t h e themes f r o m t h e f i r s t t o s e e k v a l i d a t i o n , a r e q u e s t f o r any o t h e r a s p e c t s o f t h e e x p e r i e n c e t h a t t h e p a r e n t s f o r g o t t o b r i n g up t h e f i r s t t i m e , as w e l l as an i n t r o d u c t i o n o f themes f r o m o t h e r p a r t i c i p a n t s ' a c c o u n t s t h a t had n o t come up. G i v e n t h i s e x p l a n a t i o n , t h e f i v e c o u p l e s a s k e d , a g r e e d t o a s e c o n d i n t e r v i e w . One f a m i l y had f r i e n d s v i s i t i n g when t h e i n v e s t i g a t o r a r r i v e d f o r t h e s e c o n d i n t e r v i e w . The p a r e n t s had d e c i d e d t h a t one o f them w o u l d c o n t i n u e v i s i t i n g w i t h t h e f r i e n d s i n t h e l i v i n g r o o m w h i l e t h e o t h e r p a r e n t t a l k e d t o t h e i n v e s t i g a t o r i n t h e k i t c h e n . As a r e s u l t , t h e p a r e n t s were i n t e r v i e w e d s e p a r a t e l y , t h e m o t h e r f i r s t and t h e n t h e f a t h e r . The p a r e n t s seemed a l i t t l e d i s t r a c t e d by t h e i r f r i e n d s ' p r e s e n c e b u t t h e i n t e r v i e w was an i n f o r m a t i v e o n e , t h a t l a s t e d 40 m i n u t e s . Some p a r e n t s seemed u n s u r e a b o u t t h e i r c o n t r i b u t i o n s t o t h e s t u d y , as i n d i c a t e d i n t h e s e s t a t e m e n t s . F: So t h a t ' s t h e l o n g and s h o r t o f i t - - k i n d o f h a r d t o p u t t h a t i n a r e p o r t . F: I t p r o b a b l y w o u l d have been a b e t t e r i d e a t o t a l k t o us a f t e r h i s o p e r a t i o n . A c c o r d i n g t o S p r a d l e y ( 1 9 7 9 ) , most p a r t i c i p a n t s q u e s t i o n w h e t h e r i n f a c t t h e y know enough t o be o f h e l p t o t h e i n v e s t i g a t o r . The p a r e n t s were r e a s s u r e d a b o u t t h e i r c o n t r i b u t i o n s t o t h e s t u d y and t h e i m p o r t a n c e o f t h e i r i n d i v i d u a l f a m i l y ' s e x p e r i e n c e . 36 D a t a A n a l y s i s As p r e v i o u s l y s t a t e d , d a t a a n a l y s i s s t a r t e d a t t h e same t i m e as d a t a c o l l e c t i o n . The two p r o c e s s e s r a n c o n c u r r e n t l y u n t i l t h e d a t a c o l l e c t i o n was c o m p l e t e . Then t h e f i n a l s t a g e o f a n a l y s i s became "a p e r i o d f o r b r i n g i n g f i n a l o r d e r t o p r e v i o u s l y d e v e l o p e d i d e a s " ( L o f l a n d & L o f l a n d , 1984, p. 1 3 1 ) . The i n v e s t i g a t o r ' s p r o f e s s i o n a l b a c k g r o u n d made i t i m p e r a t i v e f o r h e r t o use a t e c h n i q u e c a l l e d b r a c k e t i n g . T h i s i n v o l v e s s e t t i n g a s i d e what t h e i n d i v i d u a l t h i n k s she o r he knows a b o u t t h e e x p e r i e n c e ( O i l e r , 1982; Ray, 1985) and i s n e c e s s a r y t o a c h i e v e r e d u c t i o n , w h i c h i s b a s i c t o t h e p h e n o m e n o l o g i c a l m e t h o d . R e d u c t i o n " i s a r e f l e c t i v e t u r n b a c k t o w a r d e x p e r i e n c e w i t h a c o n s c i o u s e f f o r t t o b r a c k e t what i s known, and a c r e a t i v e p r o c e s s o f i n t u i t i n g and a n a l y z i n g human e x p e r i e n c e " ( M u n h a l l & O i l e r , 1986, p. 82 ) . G i o r g i ' s s t e p s f o r t h e p h e n o m e n o l o g i c a l method p r o v i d e d a b r o a d f r a m e w o r k f o r d a t a a n a l y s i s ( G i o r g l , 1 9 8 5 ) . These s t e p s a r e as f o l l o w s : 1. The e n t i r e t r a n s c r i p t i o n o f t h e i n t e r v i e w i s r e a d by t h e i n v e s t i g a t o r t o g e t a s e n s e o f t h e w h o l e . 2. The i n v e s t i g a t o r o nce a g a i n r e a d s t h r o u g h t h e i n t e r v i e w t o i d e n t i f y m e a n i n g u n i t s , f o c u s i n g on t h e phenomenon b e i n g r e s e a r c h e d . 3. R e d u n d a n c i e s i n t h e u n i t s a r e e l i m i n a t e d . 37 4. The i n v e s t i g a t o r r e f l e c t s on t h e c o n s t i t u e n t s and t r a n s f o r m s t h e m e a n i n g i n t o t h e c o n c e p t s o f t h e s c i e n c e . 5. T h i s a n a l y s i s i s i n t e g r a t e d and s y n t h e s i z e d i n t o a d e s c r i p t i v e s t r u c t u r e . E a c h i n t e r v i e w was t r a n s c r i b e d v e r b a t i m . B e c a u s e t h e i n v e s t i g a t o r t r a n s c r i b e d a l l b u t one i n t e r v i e w h e r s e l f , she s o o n became v e r y f a m i l i a r w i t h t h e d a t a . I n t h e c o u r s e o f t r a n s c r i b i n g , t h e p r o c e s s o f d a t a a n a l y s i s b e g a n , w i t h n o t e s b e i n g j o t t e d down as m e a n i n g u n i t s became a p p a r e n t . M e a n i n g u n i t s " a r e t h e l i n g u i s t i c c a t e g o r i e s t h a t make up t h e p a r t i c i p a n t ' s v i e w o f r e a l i t y and w i t h w h i c h t h e y d e f i n e t h e i r own and o t h e r s ' a c t i o n s " ( L o f l a n d & L o f l a n d , 1984, p. 7 1 ) . Once t h e e n t i r e i n t e r v i e w was t r a n s c r i b e d , i t was a g a i n r e a d and f u r t h e r m e a n i n g u n i t s n o t e d . As s u g g e s t e d by F i e l d & Morse ( 1 9 8 5 ) , t h e i n i t i a l c a t e g o r i e s were b r o a d t o keep t h e d a t a m a n a g e a b l e and t h e n s u b - c a t e g o r i e s were l a t e r d e r i v e d f r o m t h e s e m a j o r c a t e g o r i e s when more d a t a was i n . These b r o a d m e a n i n g u n i t s were v a l i d a t e d when t h e s e c o n d - r o u n d i n t e r v i e w s were c o n d u c t e d . Once d a t a c o l l e c t i o n was c o m p l e t e , a more f o r m a l s y s t e m o f c o d i n g t o o k p l a c e . Numerous c a t e g o r i e s were i d e n t i f i e d i n t h e m a r g i n s o f t h e t r a n s c r i p t s u s i n g a c o l o u r e d l e t t e r t o i d e n t i f y e a c h . Then e a c h o f t h e s e m i n o r c a t e g o r i e s was a l s o s o r t e d u n d e r f i v e c h r o n o l o g i c a l t y p e c a t e g o r i e s w h i c h seemed t o d e s c r i b e t h e e x p e r i e n c e . These f i v e m a j o r c a t e g o r i e s were l i s t e d , w i t h a c o l u m n f o r e a c h 38 o f t h e p a r t i c i p a n t c o u p l e s u n d e r e a c h c a t e g o r y . Then as t h e t r a n s c r i p t s were r e a d a g a i n , t h e c o l o u r e d l e t t e r c o d e s f o r t h e m i n o r c a t e g o r i e s were l i s t e d i n e a c h c o l u m n w i t h a few words t o e x e m p l i f y t h e p a r t i c i p a n t ' s t h o u g h t s . By i n c l u d i n g t h e s e d e s c r i p t o r s t h e i n v e s t i g a t o r was a b l e t o e n s u r e r e p r e s e n t a b i l i t y . At t h i s p o i n t i n t h e p r o c e s s , t h e s e m a j o r and m i n o r c a t e g o r i e s were d i s c u s s e d w i t h two f a c u l t y a d v i s o r s . The l a b e l s o f t h e m a j o r c a t e g o r i e s were c h a n g e d somewhat and a g a i n t h e t r a n s c r i p t s were r e a d t h r o u g h . H i g h e r l e v e l c o n c e p t l a b e l s were u s e d t o encompass a number o f l o w e r l e v e l c o n c e p t s . " O f t e n t h e f i r s t t e n t a t i v e s e t o f c a t e g o r i e s i s j u s t a l i s t o f a l l t h e p o s s i b l e l a b e l s f o r t h e d a t a t h e i n v e s t i g a t o r c a n i m a g i n e . Some o f them w i l l t u r n o u t t o be t o o t r i v i a l o r t o o g e n e r a l , o r w i l l n o t f i t t h e d a t a " ( D i e r s , 1979, p. 1 1 7 ) . The i n v e s t i g a t o r was v e r y c o n s c i o u s o f e n s u r i n g t h a t as much d a t a as p o s s i b l e was a c c o u n t e d f o r and t h a t t h e c o n c e p t l a b e l s were i n d e e d t r u e t o t h e d a t a . I t was i m p o r t a n t t o keep i n mind t h a t m e a n i n g u n i t s a r e " c o n t e x t - l a d e n " ( G i o r g i , 1985, p. 14) and t h e r e f o r e must n o t be c o n s i d e r e d i n i s o l a t i o n . As F i e l d & M o rse ( 1 9 8 5 ) s u g g e s t , e v i d e n c e d i s c o n f i r m i n g t e n t a t i v e c o n s t r u c t s was s o u g h t t o e n h a n c e r e p r e s e n t a b i l i t y • The m e a n i n g u n i t s were o n c e a g a i n d i s c u s s e d w i t h t h e f a c u l t y a d v i s o r s , g i v i n g e x a m p l e s o f p a r t i c i p a n t s ' s t a t e m e n t s t o i l l u s t r a t e how t h e s e u n i t s were d e r i v e d . A l i t t l e more s h u f f l i n g o f c o n c e p t l a b e l s o c c u r r e d b e f o r e t h e 39 i n v e s t i g a t o r had h e r f i n a l o u t l i n e and was a b l e t o s t a r t w r i t i n g . However, f u r t h e r c h a n g e s were made i n t h e c o u r s e o f w r i t i n g c h a p t e r 4. I t seems, i n f a c t , t h a t you do n o t t r u l y b e g i n t o t h i n k u n t i l y ou a t t e m p t t o l a y o u t y o u r i d e a s and i n f o r m a t i o n i n t o s u c c e s s i v e s e n t e n c e s . . . . F o r b e t t e r o r w o r s e , when you a c t u a l l y s t a r t w r i t i n g , y o u b e g i n t o g e t new i d e a s , t o see new c o n n e c t i o n s , t o remember m a t e r i a l you had f o r g o t t e n . . . . The p r o c e s s o f t h i n k i n g w h i l e a c t u a l l y w r i t i n g means t h a t y o u r o u t l i n e i s n o t l i k e l y t o be i d e n t i c a l t o t h e c o m p l e t e d t e x t . ( L o f l a n d & L o f l a n d , 1984, pp. 142-143) I n e s s e n c e , t h e p r o c e s s o f d a t a a n a l y s i s c o n t i n u e d as t h e i n v e s t i g a t o r i n t e r w o v e h e r a n a l y s i s w i t h v e r b a t i m q u o t e s f r o m t h e p a r t i c i p a n t s ' a c c o u n t s . Summary The q u a l i t a t i v e m e t h o d o l o g y u s e d t o s t u d y t h e e x p e r i e n c e o f f a m i l i e s h a v i n g a c h i l d w i t h CHD, a w a i t i n g c o r r e c t i v e h e a r t s u r g e r y was d e s c r i b e d i n t h i s c h a p t e r . A b r i e f i n t r o d u c t i o n t o t h e p h e n o m e n o l o g i c a l a p p r o a c h was f o l l o w e d by a s e c t i o n on s e l e c t i o n o f p a r t i c i p a n t s . T h i s s e c t i o n d e s c r i b e d t h e c r i t e r i a f o r s e l e c t i o n , s e l e c t i o n p r o c e d u r e and c h a r a c t e r i s t i c s o f t h e p a r t i c i p a n t f a m i l i e s . E t h i c a l c o n s i d e r a t i o n s were d i s c u s s e d n e x t . F i n a l l y , t h e c o n c u r r e n t p r o c e s s e s o f d a t a c o l l e c t i o n and d a t a a n a l y s i s were c o n s i d e r e d I n some d e t a i l . 40 CHAPTER 4 P a r e n t s ' P e r c e p t i o n s o f T h e i r F a m i l y ' s E x p e r i e n c e I n t r o d u c t i o n The a c c o u n t s g i v e n by p a r e n t s o f t h e i r f a m i l y ' s e x p e r i e n c e when t h e y h a v e a c h i l d a w a i t i n g c o r r e c t i v e h e a r t s u r g e r y w i l l be p r e s e n t e d i n t h i s c h a p t e r . E a c h f a m i l y ' s e x p e r i e n c e d u r i n g t h e t r a n s i t i o n p e r i o d was a u n i q u e o n e . H owever, t h e r e were common themes a c r o s s a l l t h e a c c o u n t s . T h i s c h a p t e r w i l l be o r g a n i z e d a r o u n d t h e s e t h e m e s . A d i a g n o s i s o f CHD marked t h e b e g i n n i n g o f t h e t r a n s i t i o n p e r i o d and t h i s i s where most p a r e n t s b egan t h e i r a c c o u n t s . I t became o b v i o u s t o t h e i n v e s t i g a t o r t h a t t h e e x p e r i e n c e was c l o s e l y l i n k e d t o a s e r i e s o f e v e n t s . The f o u r f a c e t s o f t h e e x p e r i e n c e w h i c h i n c o r p o r a t e t h e s e e v e n t s a r e : d i a g n o s i s o f CHD, a d j u s t i n g t o c a r i n g f o r c h i l d once home, l i v i n g w i t h a c h i l d w i t h a c h r o n i c c o n d i t i o n and w a i t i n g f o r c o r r e c t i v e h e a r t s u r g e r y . F e e l i n g s t a t e s were i d e n t i f i e d as a c c o m p a n y i n g t h e s e f a c e t s . U n c e r t a i n t y was t h e p r e d o m i n a n t f e e l i n g s t a t e w h i c h p e r s i s t e d t o one d e g r e e o r a n o t h e r t h r o u g h t h e w h o l e e x p e r i e n c e . T h i s u n c e r t a i n t y , o r l a c k o f d e f i n i t e k n o w l e d g e , was c r e a t e d by a number o f e v e n t s and c i r c u m s t a n c e s t h r o u g h t h e c o u r s e o f t h e t r a n s i t i o n p e r i o d . The c h a r a c t e r i s t i c s o f t h i s u n c e r t a i n t y w i l l be d i s c u s s e d as e a c h f a c e t o f t h e e x p e r i e n c e i s d e s c r i b e d . F e e l i n g s t a t e s t h e n l e d t o t h e t e s t i n g o u t o f v a r i o u s c o p i n g 41 s t r a t e g i e s by t h e s e f a m i l i e s . The f o l l o w i n g t a b l e d e p i c t s t h e i d e n t i f i e d t h e m e s . T a b l e I I F a c e t s , F e e l i n g S t a t e s and C o p i n g S t r a t e g i e s F a c e t s : M a j o r F e e l i n g S t a t e s C o p i n g S t r a t e g i e s D i a g n o s i s o f C o n g e n i t a l H e a r t D i s e a s e : Shock U n c e r t a i n t y F e a r T r u s t i n g H e a l t h C a r e P r o f e s s i o n a l s A d j u s t i n g t o C a r i n g f o r C h i l d Once Home: S e e k i n g S u p p o r t U n c e r t a i n t y B e i n g V i g i l a n t F e a r / F r u s t r a t i o n N o r m a l i z i n g L i v i n g w i t h a C h i l d w i t h a C h r o n i c C o n d i t i o n : F o c u s i n g on t h e P r e s e n t U n c e r t a i n t y A n t i c i p a t i n g t h e F u t u r e F r u s t r a t i o n B e i n g H o p e f u l W a i t i n g f o r C o r r e c t i v e H e a r t S u r g e r y : U n c e r t a i n t y F e a r " T r u s t i n g h e a l t h c a r e p r o f e s s i o n a l s , " " s e e k i n g s u p p o r t , " " b e i n g v i g i l a n t , " " n o r m a l i z i n g , " " f o c u s i n g on t h e p r e s e n t , " " a n t i c i p a t i n g t h e f u t u r e , " and " b e i n g h o p e f u l " were t h e m a j o r c o p i n g s t r a t e g i e s e m p l o y e d by a l l p a r e n t s . O n l y some s t r a t e g i e s were u s e d i n e v e r y f a c e t o f t h e e x p e r i e n c e , f o r e x a m p l e " b e i n g h o p e f u l , " w h i l e o t h e r s were u s e d more s e l e c t i v e l y , f o r e x a m p l e " b e i n g v i g i l a n t . " 42 F a c e t s o f t h e E x p e r i e n c e E a c h o f t h e f o u r f a c e t s o f t h e e x p e r i e n c e w i l l now be d e s c r i b e d w i t h p a r t i c u l a r e m p h a s i s on t h e e m o t i o n a l r e a c t i o n s o f p a r e n t s i n c l u d i n g , how t h e i r f e e l i n g s c h a n g e d b e t w e e n f a c e t s . The p r e d o m i n a n t e m o t i o n a l s t a t e o f u n c e r t a i n t y w i l l be f o l l o w e d t h r o u g h t h e f a c e t s and d i s c u s s e d i n r e l a t i o n t o i t s c h a r a c t e r i s t i c s a t any g i v e n t i m e . Demands f o r e x p l a n a t i o n s a b o u t t h e c h i l d ' s c o n d i t i o n were made o f p a r e n t s t h r o u g h o u t t h e e x p e r i e n c e . T h e i r r e a c t i o n s t o t h e s e demands w i l l a l s o be d e s c r i b e d as e a c h f a c e t i s e x p l o r e d . D i a g n o s i s o f C o n g e n i t a l H e a r t D i s e a s e The p a r e n t s i n t h i s s t u d y were a l l i n f o r m e d o f t h e d i a g n o s i s o f CHD w i t h i n t h e f i r s t few d a y s o f t h e i r c h i l d r e n ' s l i v e s and a p r o b l e m had been s u s p e c t e d i n most c a s e s a t b i r t h o r s h o r t l y a f t e r . T h e r e f o r e , t h e e x p e c t e d e v e n t o f t h e b i r t h o f a baby was a c c o m p a n i e d by t h e u n e x p e c t e d e v e n t o f t h e d i a g n o s i s o f CHD f o r t h e s e f a m i l i e s . L e a r n i n g o f and t r y i n g t o a s s i m i l a t e t h e i m p l i c a t i o n s o f t h e d i a g n o s i s was a f a c e t d e s c r i b e d i n d e t a i l by t h e p a r e n t s . Not o n l y was a d i a g n o s i s o f CHD t o t a l l y u n e x p e c t e d , b u t most o f t h e f a m i l i e s had no e x p e r i e n c e w i t h a n yone h a v i n g t h i s p r o b l e m and t h u s had no c o n c e p t o f t h e p o s s i b l e i m p l i c a t i o n s o f t h e d i a g n o s i s . I n i t i a l r e a c t i o n s . The most p e r v a s i v e r e a c t i o n t o t h e d i a g n o s i s o f CHD was one o f s h o c k . 43 * M: I t h i n k i t was a b i t o f a s h o c k . I mean, o f c o u r s e we d i d n ' t e x p e c t a n y t h i n g l i k e t h a t when he was b o r n . F: I t w a s n ' t s o m e t h i n ' we e v e n e x p e c t e d ' c a u s e t h e r e ' s no h e a r t p r o b l e m s on e i t h e r s i d e o f o u r f a m i l i e s. M: And my p r e g n a n c y , l i k e I d i d n ' t e v e n have m o r n i n g s i c k n e s s . I t was j u s t - - i t was a l m o s t t o o p e r f e c t a p r e g n a n c y , I g u e s s . F: I t w o u l d be a s h o c k f o r a n y b o d y , I g u e s s . T h e r e was no r e a s o n t o e x p e c t i t . T h e r e was n e v e r a p r o b l e m , y o u know, w i t h a n y t h i n g so y o u w o u l d n ' t . . These p a r e n t s assumed t h a t t h e r e w o u l d have e i t h e r been a f a m i l y h i s t o r y o f p r o b l e m s o r some i n d i c a t i o n d u r i n g t h e p r e g n a n c y t h a t s o m e t h i n g was w r o n g . S a d n e s s was a l s o o b v i o u s a t t h i s t i m e . M: . . . b u t I t h i n k , we had o u r c r y . . . D i s b e l i e f was a n o t h e r r e a c t i o n . M: Y o u ' r e n o t r e a l l y l i s t e n i n g t o w h a t ' s b e i n g s a i d . You h e a r i t b u t y o u d o n ' t want t o b e l i e v e i t . A f e e l i n g o f h e l p l e s s n e s s was d e s c r i b e d by some p a r e n t s . F: I f e e l , I j u s t f e e l s o r r y f o r h i m , y o u know, I f e l t , when t h e y t o l d me a b o u t him t h e f i r s t t i m e I was h o l d i n g him and I — t h e r e was n o t h i n g you c a n do. He's t o o l i t t l e . I : You f e e l h e l p l e s s . F: Y e a h , y o u ' r e h e l p l e s s and t h i s p o o r l i t t l e baby h a s n ' t g o t , h a s n ' t had t h e c h a n c e , a good c h a n c e , a good s t a r t . I ' v e n e v e r r e a l l y been r e l a t e d w i t h — n o b o d y c l o s e t o me has e v e r b e e n - - h a d any m a j o r p r o b l e m s so I — a l l o f a s u d d e n . * N o t e . I = I n v e s t i g a t o r M = M o t h e r F = F a t h e r When names and i n i t i a l s a r e c i t e d i n t h e a c c o u n t s , t h e y a r e f i c t i t i o u s • 44 I : I t ' s a new e x p e r i e n c e . F: One o f my l i t t l e - - m y k i d s . I grew up w i t h a f a m i l y — I ' m f r o m a f a m i l y o f e i g h t k i d s and t h e r e were n e v e r any d e f e c t s o r p r o b l e m s so I - -a l l o f a s u d d e n i t h i t me—my c h i l d r e n ... Once t h e p a r e n t s g o t o v e r t h e i n i t i a l s h o c k t h e y became a n g r y and s t a r t e d q u e s t i o n i n g why s u c h a t h i n g had happened t o them. M: W e l l , I g u e s s when he was f i r s t b o r n — j u s t w o n d e r i n g why i t was u s . You know, why d i d i t happen i n t h e f i r s t p l a c e ? And I g u e s s t h e h a r d e s t q u e s t i o n i s t h a t nobody knows why, y o u know, w h y - n o t h i n g t h a t y o u d i d o r you know, c a u s e d i t o r t h a t , b u t y o u ' r e s t i l l w o n d e r i n g why, y o u know, d i d I t h a p p e n . I : You f e e l l i k e y o u need an a n s w e r . M: Ya! So a s , y o u know, t h e n e x t t i m e , y o u know... One o f t h e m a j o r m o t i v a t o r s b e h i n d s e a r c h i n g f o r a c a u s e was c o n c e r n a b o u t t h e r e s u l t s o f f u t u r e p r e g n a n c i e s . Most c o u p l e s f o u n d some s o l a c e i n t h e f a c t t h a t t h e h e a r t d e f e c t was n o t h e r e d i t a r y and t h e c h a n c e o f r e c u r r e n c e was s l i m . M: M i n d you i t d o e s n ' t s c a r e me t o t h i n k t h a t s o m e t h i n g , y o u know, s o m e t h i n g d i f f e r e n t ( a n o t h e r t y p e o f h e a r t d e f e c t ) w i l l h appen t h e n e x t t i m e . You know, i t d o e s n ' t — y o u know, t o me i t ' s — t h i s i s j u s t a h , w e l l a f l u k e o f n a t u r e and f o r i t t o happen a g a i n — ' c a u s e i t ' s n o t g e n e t i c , y o u know. I t ' s n o t h e r e d i t a r y o r t h a t , y o u know, so . . « M: Then she e x p l a i n e d t h a t t h e most c a u s e s o f d e f e c t s i s j u s t some k i n d o f v i r u s and I know I d i d have a c o l d so t h a t c o u l d h ave been i t and I know i t was i n t h e f i r s t t h r e e months o f t h e p r e g n a n c y so t h a t you know, i f t h e r e ' s any e x p l a n a t i o n t h a t ' s p r o b a b l y what i t i s . And I t h i n k t h a t made Mark and I f e e l b e t t e r b e c a u s e we knew i t w a s n ' t s o m e t h i n g i n o u r g e n e s o r j u s t s o m e t h i n g a b n o r m a l , l i k e e v e r y baby we m i g h t have w i l l h a ve t h i s p r o b l e m . 45 F: I t w o u l d be d i f f e r e n t i f i t was s o m e t h i n g h e r e d i t a r y — y o u k i n d o f e x p e c t e d , w e l l i s t h e baby g o i n g t o have s o m e t h i n g wrong w i t h him o r n o t , b u t i t ' s n o t . M: And t h e n t h e y e x p l a i n e d t o us t h a t i t ' s v e r y r a r e t h a t a c o u p l e t h a t has a baby w i t h a h e a r t d e f e c t w i l l h ave a n o t h e r baby w i t h a h e a r t d e f e c t . I n s e a r c h i n g f o r a c a u s e , most p a r e n t s i n i t i a l l y e i t h e r b l a med t h e m s e l v e s o r s o m e t h i n g o r someone e l s e . T h i s b l a m i n g was s o m e t i m e s i n t e n s i f i e d by t h e r e a c t i o n s o f r e l a t i v e s • M: I t h i n k t h e f i r s t p a r t w a s — i t was why u s , what d i d we do wrong? Urn, t h e y a s k e d l i k e ' c a u s e I do smoke b u t I d i d n ' t smoke t h a t much. I d i d n ' t d r i n k o r you know, so t h e y a s k e d us e v e r y t h i n g b u t o f c o u r s e you blame y o u r s e l f . You t h i n k t h a t you d i d s o m e t h i n g w r o n g . I t h o u g h t a t work maybe I d i d - - l i f t e d s o m e t h i n g I s h o u l d n ' t have l i f t e d and you know, a l l t h a t . I t h i n k a l o t o f p e o p l e c a n ' t a c c e p t , l i k e f a m i l y members and t h a t , c a n ' t a c c e p t t h e f a c t t h a t y o u r baby has s o m e t h i n g wrong w i t h i t .... my m o t h e r urn, she a l m o s t wanted to s a y l i k e , "what d i d t h e d o c t o r do wrong when he was b o r n t o c a u s e him t o do t h i s ? " And I s a i d " i t i t w o u l d n ' t happen l i k e t h a t , l i k e i t grew l i k e t h a t . " But I t h i n k , t h e p e d i a t r i c i a n — w e were t a l k i n g one day and she j u s t s a i d t h a t some p e o p l e have t o f i n d someone t o b l a m e — y o u know, wh o e v e r t h a t c o u l d b e. Coming t o t e r m s w i t h t h e c h i l d ' s c o n d i t i o n was s o m e t i m e s made more d i f f i c u l t by g r a n d p a r e n t s who were s t r u g g l i n g w i t h t h e same t h i n g . The need t o a c c e p t t h e c h i l d ' s d i a g n o s i s was m e n t i o n e d by s e v e r a l p a r e n t s . F: T h e r e i s n ' t much s e n s e i n w o r r y i n g t o d e a t h a l l by y o u r s e l f o r f i g h t i n g o r b l a m i n g o r a n y t h i n g . M: Y e a h , y o u a c c e p t . The s o o n e r you a c c e p t . F: Hope f o r t h e l i t t l e guy and make i t as p l e a s a n t as p o s s i b l e f o r h i m , y o u know. 46 Unc e r t a i n t y . From t h e t i m e o f t h e f i r s t s u g g e s t i o n o f a p r o b l e m a l a r g e m e a s u r e o f u n c e r t a i n t y s u r r o u n d e d t h e e x p e r i e n c e as d e s c r i b e d by t h e s e p a r e n t s . F i r s t o f a l l , t h e r e was u n c e r t a i n t y a b o u t t h e s p e c i f i c d i a g n o s i s , e s p e c i a l l y b e f o r e t h e i n f a n t was t r a n s p o r t e d t o t h e t e r t i a r y c a r e c e n t r e . W i t h t h i s u n c e r t a i n t y came d i s c o m f o r t and f e a r . M: He was b o r n a t f o u r i n t h e m o r n i n g , so i t was l i k e t h e n e x t m o r n i n g t h a t we f o u n d o u t t h a t s o m e t h i n g was w r o n g . We d i d n ' t know what e x a c t l y .... They d i d w h a t e v e r t e s t s t h e y c o u l d do o u t h e r e and our d o c t o r t h o u g h t i t was a c t u a l l y a w o r s e h e a r t d e f e c t t h a n what he does h a v e , so I'm s u r e t h a t t h a t was b e t t e r . And t h e n as s o o n as he went down t h e r e , t h e n we f o u n d o u t what was wrong w i t h him and t a l k e d t o t h e d i f f e r e n t d o c t o r s down a t [ t h e t e r t i a r y h o s p i t a l ] , so we had a b e t t e r i d e a . But i t , i t was s c a r y ! One c o u p l e were o v e r w h e l m e d w i t h g r i e f b e c a u s e o f t h e i n f o r m a t i o n g i v e n t o them a t t h e co m m u n i t y h o s p i t a l . M: The n u r s e s , t h e f i r s t n i g h t , t h e y n o t i c e d t h a t h e r c o l o u r was a b i t o f f so t h e y p u t h e r i n t h e o x y g e n t e n t t h e r e f o r t h e n i g h t and t h e n D r . L., t h e c h i l d r e n s ' d o c t o r , he came and c h e c k e d h e r o u t on th e F r i d a y and t h e r e was a murmur t h e r e and he wa n t e d t o send h e r down t o D r . B ... But a l s o t h e y d i d some x - r a y s o f h e r down t h e r e a t [ c o m m u n i t y h o s p i t a l ] and t h a t ' s when t h e y s a i d t h a t — s e e h e r h e a r t f l i p s o v e r t h e o p p o s i t e way so when t h e y saw t h e x - r a y s t h e y j u s t assumed t h a t t h e h e a r t was i n t h e r i g h t p l a c e b u t t h e s t o m a c h and l i v e r were on t h e o p p o s i t e s i d e — s o t h a t was a n o t h e r t h i n g . We were c h e c k i n g o ut and t h e n he came up and s a i d , " w e l l , I ' v e g o t s o m e t h i n g e l s e f o r y o u . " F: They'd l o o k e d a t t h e x - r a y s b a c k w a r d s . M: They'd l o o k e d a t them b a c k w a r d s so he t o l d us t h a t t h i s was wrong t o o and w e l l , as s o o n as we h e a r d t h a t , I t h o u g h t 'oh my g o d , what e l s e ! ' So, t h i s was what we f o u n d o ut when we l e f t t h e h o s p i t a l so we were j u s t t o t a l l y d e v a s t a t e d by t h i s t i m e . F: On t h e way t o [ t e r t i a r y h o s p i t a l ] we t h o u g h t t h e r e 4 7 was a l l k i n d s o f t h i n g s wrong w i t h h e r . M: And t h e n , when down t h e r e , t h e y t o o k more x - r a y s and t h e y s a i d , " t h e y must have r e a d them wrong a t [ c o m m u n i t y h o s p i t a l ] " so we were q u i t e r e l i e v e d a b o u t t h a t a t l e a s t . The m i s i n f o r m a t i o n g i v e n t o t h e s e p a r e n t s a t t h e community h o s p i t a l was e x t r e m e l y a n x i e t y p r o v o k i n g . F o r t h e s e two c o u p l e s t h e n , t h e news a t t h e t e r t i a r y c a r e c e n t r e was b e t t e r t h a n a n t i c i p a t e d . T h e r e o f t e n r e m a i n e d some d e g r e e o f u n c e r t a i n t y r e g a r d i n g d i a g n o s i s , p r o g n o s i s and t r e a t m e n t e v e n o n c e t h e baby had been s e e n a t t h e t e r t i a r y h o s p i t a l . F: A f t e r t h e F r i d a y n i g h t we came home and we s t i l l h a d — w e were s t i l l q u i t e c o n f u s e d as t o what was g o i n g o n . And i t was a weekend t o o , and s o , Dr. B., t h a t was l o o k i n g a f t e r h e r w a s n ' t t h e r e a l l w e e kend. I g u e s s nobody e l s e was r e a l l y w a n t i n g t o s a y one way o r t h e o t h e r w h a t ' s h a p p e n i n g . I t was more o r l e s s h i s d e c i s i o n . But once we saw h i m on t h e Monday, he f i l l e d us i n and drew p i c t u r e s and g a v e us a b o o k . He s a i d he'd l e t us t a k e h e r home. U n c e r t a i n t y c o u l d a r i s e , t h e r e f o r e , when t h e p a r e n t s were b o t h i l l - p r e p a r e d t o a c c e p t t h e i n f o r m a t i o n g i v e n t o them and t h e i n f o r m a t i o n was n o t g i v e n i n a f o r m t h a t was e a s i l y u n d e r s t a n d a b l e . Sometimes t h e d o c t o r s t h e m s e l v e s c o u l d n o t p r e d i c t t h e s e v e r i t y o f t h e c h i l d ' s c o n d i t i o n , e s p e c i a l l y i f a h e a r t c a t h e t e r i z a t i o n was n o t done u n t i l l a t e r . M: And o f c o u r s e a t t h a t s t a g e t h e y c o u l d n ' t t e l l us how s e r i o u s i t w o u l d be so t h a t was a l i t t l e b i t --we j u s t had t o w a i t and see t y p e o f t h i n g , when he g o t a l i t t l e b i t o l d e r . I : I s e e , so i t was h a r d n o t k n o w i n g e x a c t l y how he was g o i n g t o b e . 48 M: Y e a h , how he was g o i n g t o b e . Y e t t h o u g h , I knew i n t h e w o r s t c a s e s how bad i t c o u l d be and i n t h e b e s t c a s e s how o k a y i t c o u l d be. G e n e r a l k n o w l e d g e o f t h e s p e c t r u m o f p o s s i b l e i m p l i c a t i o n s o f t h e d i a g n o s i s was u s u a l l y f e l t t o be b e t t e r t h a n no k n o w l e d g e a t a l l . Many p a r e n t s were a f r a i d t h a t t h e i r i n f a n t s m i g h t d i e i n t h i s e a r l y p e r i o d . One c o u p l e had t h e i r b aby s e n t b a c k to t h e t e r t i a r y h o s p i t a l a f t e r b e i n g d i s c h a r g e d t o t h e community h o s p i t a l , w h i c h s e r v e d t o h e i g h t e n t h e i r u n c e r t a i n t y and f e a r r e g a r d i n g t h e i r b a b y ' s p r o g n o s i s . M: So, so o k a y two d a y s he was b a c k a t [ c o m m u n i t y h o s p i t a l ] and we'd j u s t k i n d a g o t u s e d t o , y o u know, f i v e m i n u t e s away f o r u s , and t h e y s a i d t h a t he was g e t t i n g c o n g e s t e d and t h e y k e p t on t a l k i n g a b o u t - - I d o n ' t know what i t ' s c a l l e d , b u t i t ' s t h e s m a l l o p e n i n g when a b a b y ' s b o r n when t h e y go f r o m t h e m o t h e r ' s c i r c u l a t o r y s y s t e m t o t h e i r own, and t h e y k e p t t a l k i n g a b o u t " w e l l , i f t h a t h o l e c l o s e s t h e n we're i n r e a l t r o u b l e ! " So when we g o t a c a l l f r o m t h e h o s p i t a l s a y i n g , "we're s e n d i n g him b a c k down t o [ t e r t i a r y h o s p i t a l ] , " we t h o u g h t , 'oh my g o d ! ' I t was j u s t — w e f i n a l l y k i n d a f e l t , o k a y , h e ' s n o t g o i n g t o d i e , t y p e o f t h i n g . . . . And when [ t e r t i a r y h o s p i t a l ] g o t him b a c k , I t h i n k i t was D r . J . t h a t was on c a l l , and he s a i d - - h e phoned us l i k e when he g o t him b a c k - -and s a i d , " I d o n ' t know why t h e y s e n t him b a c k b e c a u s e . . . " F: "He's j u s t t h e same as when we s e n t him t h e r e i n th e f i r s t p l a c e . " These p a r e n t s had l i t t l e c o n f i d e n c e i n t h e h e a l t h c a r e p r o f e s s i o n a l s a t t h e co m m u n i t y h o s p i t a l as a r e s u l t o f t h i s i n c i d en t . An i n c i d e n t d u r i n g a c a r d i a c c a t h e t e r i z a t i o n i n t e n s i f i e d one c o u p l e ' s a n x i e t y a b o u t t h e i r c h i l d ' s p r o g n o s i s . 49 F: W e l l , he had a r e a l l y s e r i o u s e p i s o d e o f b r a d y c a r d i a when he was j u s t a b o u t s i x h o u r s o l d . L u c k i l y , he was i n t h e ICU a t t h e [ t e r t i a r y h o s p i t a l ] . They were t r y i n g t o do a b a l l o o n s e p t o s t o m y and i t s t i m u l a t e d t h e v a g u s n e r v e . So, he was e i g h t m i n u t e s w i t h a h e a r t r a t e o f 60-80. They a c t u a l l y d i d do CPR on h i m - - w e l l , c a r d i a c c o m p r e s s i o n s . You know, so t h a t , t h a t ' s w h a t , you know, we were r e a l l y s c a r e d o f , y e p . . . . E s p e c i a l l y when i t comes t o s o m e t h i n g l i k e t h a t , w here yo u know, y o u h e a r a l l t h e h o r r o r s t o r i e s o f a h , y o u know, c e r e b r a l p a l s y and m e n t a l r e t a r d a t i o n and t h i n g s l i k e t h a t , c a u s e d by s e v e r e a n o x i a , y o u know. I t r e a l l y d o e s s t i c k w i t h y o u . These p a r e n t s were l i v i n g w i t h t h e e x t r a u n c e r t a i n t y o f n o t k n o w i n g i f t h e i r c h i l d was g o i n g t o be n o r m a l m e n t a l l y . B e c a u s e t h e f a t h e r was an a l l i e d h e a l t h c a r e p r o f e s s i o n a l and had a b e t t e r u n d e r s t a n d i n g t h a n a l a y p e r s o n a b o u t t h e p o s s i b l e i m p l i c a t i o n s o f an e p i s o d e s u c h as t h i s , he was p e r h a p s more w o r r i e d . T h u s , i t i s a p p a r e n t t h a t u n c e r t a i n t y i n t h i s e a r l y p e r i o d r e v o l v e d a r o u n d t h e s p e c i f i c d i a g n o s i s and p r o g n o s i s o f t h e i n f a n t . When th e p h y s i c i a n s t h e m s e l v e s d i d n o t have a l l t h e a n s w e r s t h e n t h e p a r e n t s were a l s o u n s u r e . At o t h e r t i m e s p a r e n t s l a c k e d d e f i n i t e k n o w l e d g e b e c a u s e o f an i n i t i a l s t a t e o f s h o c k and d i s b e l i e f w h i c h l i m i t e d what t h e y c o u l d t a k e i n , m i s r e a d i n g e n v i r o n m e n t a l c u e s , o r an u n s u i t a b l e manner o f i n f o r m a t i o n d e l i v e r y . E x p l a i n i n g t o o t h e r s . F o r most o f t h e p a r e n t s , h a v i n g t o e x p l a i n t h e i r b a b y ' s p r o b l e m t o r e l a t i v e s and f r i e n d s was an e x t r a b u r d e n . I t was p a r t i c u l a r l y d i f f i c u l t a t t h e b e g i n n i n g when t h e y were s t i l l i n s h o c k and f e e l i n g u n c e r t a i n a b o u t t h e i r b a b y ' s d i a g n o s i s and p r o g n o s i s t h e m s e l v e s . 50 M: I t was — i t was h a r d , and w e — y o u know, t h e day we f o u n d o u t — i t was a v e r y h a r d day f o r u s . Um, y o u know, as w e l l as M a r k ' s p a r e n t s i n T o r o n t o p h o n i n g — y o u know, h a v i n g t o phone p e o p l e and keep s a y i n g t h e same t h i n g o v e r and o v e r and o v e r a g a i n .... So y o u ' r e e x p l a i n i n g t o t h e m — y o u ' r e t r y i n g t o make them f e e l b e t t e r and y o u ' r e t h i n k i n g , ' w e l l , t h e y s h o u l d be m a k i n g me f e e l b e t t e r . ' But you do — l i k e when Mark phoned h i s p a r e n t s i n T o r o n t o . . . F: Y e a h , i t was h a r d on them. M: H i s dad s a i d , uh you know, k i n d o f l i k e , " l i k e , w i l l he grow o u t o f i t ? " and Mark was t r y i n g t o e x p l a i n t o him " w e l l no i t ' s , i t ' s q u i t e s e r i o u s . " I t h i n k h i s dad f o u n d i t h a r d t o a c c e p t t h a t h i s g r a n d s o n h a d . . F: Y e a h , he d i d n ' t want t o a c c e p t i t . These p a r e n t s and o t h e r s , r e p o r t e d t h a t when r e l a t i v e s l i v e d a t a d i s t a n c e , e x p l a i n i n g became e v e n more d i f f i c u l t . M: The o n l y r e a s o n why I had a l i t t l e b i t o f d i f f i c u l t y t e l l i n g them i s I j u s t d i d n ' t want t o w o r r y t h e m — t y p e o f t h i n g . F: Y e a h , f r o m t h a t d i s t a n c e so much goes o n — t h e y d o n ' t r e a l l y s e e . You know a l l t h e y t h i n k i s h e ' s g o t a h e a r t p r o b l e m , p o o r l i t t l e . . . I f t h e y ' d s e e n h i m , t h e y ' d s e e , w e l l he's f i n e , b u t j u s t t o t e l l them . A few f a m i l i e s d e s c r i b e d h e a l t h c a r e p r o f e s s i o n a l s ' a c t i o n s w h i c h l e s s e n e d t h e b u r d e n o f h a v i n g t o e x p l a i n t h e i r c h i l d ' s p r o b l e m t o r e l a t i v e s and f r i e n d s . A c a r d i o l o g i s t e x p l a i n e d t h e p r o b l e m t o one s e t o f g r a n d p a r e n t s when t h e y were v i s i t i n g t h e h o s p i t a l . The e x p l a n a t i o n s were made e a s i e r f o r a n o t h e r c o u p l e by h a v i n g a c o p y o f a b o o k l e t a b o u t c o n g e n i t a l h e a r t d e f e c t s . I : Where d i d y o u g e t t h a t ? M: From t h e s o c i a l w o r k e r a t t h e h o s p i t a l . She f o u n d a c o p y and b r o u g h t i t t o me. She s a i d i t ' s g o t a l l t h o s e a n s w e r s f o r t h o s e q u e s t i o n s t h a t r e l a t i v e s a s k and you know how t o answer them. 51 And I r e a l l y d i d b e c a u s e we ended up p h o t o c o p y i n g and s e n d i n g them home b e c a u s e my m o t h e r t h e n went home and h i s m o t h e r t h e n went home and t r i e d t o e x p l a i n t o o t h e r r e l a t i v e s and she s a i d , y o u know, "s e n d us o u t a book." J u s t as d i a g r a m s e n h a n c e d t h e p a r e n t s ' c o m p r e h e n s i o n o f t h e d i a g n o s i s , t h e y were a l s o n e c e s s a r y t o o t h e r p e o p l e s ' u n d e r s t a n d i n g . Those p a r e n t s who had a c h i l d p r i o r t o t h e b i r t h o f t h e baby w i t h CHD a l s o had t o c o n t e n d w i t h e x p l a i n i n g t h e s i t u a t i o n t o a young c h i l d . The s i b l i n g s were a l l b e t w e e n t h r e e t o f i v e y e a r s o f a g e . M: A h h , b u t i t ' s been h a r d on h e r e s p e c i a l l y when he was b o r n , ' c a u s e she knew a l l a l o n g t h a t t h e r e was a b a b y , y o u know, c o m i n g r i g h t f r o m t h e v e r y b e g i n n i n g . When I f o u n d o u t she was more o r l e s s t o l d and a h , t h e day t h a t I went i n t o t h e h o s p i t a l s h e , y o u know, knew t h a t I was g o i n g t o have t h e baby and t h a t , and a h — t h e n c o m i n g , n o t me, n o t co m i n g home and him n o t c o m i n g home a t n i g h t o r b e i n g away f o r s u c h a l o n g p e r i o d o f t h e day and t h e n I came home w i t h no b a b y . T h a t r e a l l y t h r e w h e r o f f . 1 mean " l i k e w a i t a m i n u t e , y o u know. D i d you l i e t o me?" These young c h i l d r e n f o u n d i t v e r y h a r d t o u n d e r s t a n d t h e s i t u a t i o n and t h u s t h e p a r e n t s o f t e n had t o d e a l w i t h t h e i r a n g e r as w e l l . P r e p a r i n g t o t a k e t h e i n f a n t home. P r i o r t o t h e i n f a n t ' s d i s c h a r g e f r o m h o s p i t a l most o f t h e p a r e n t s f e l t somewhat a s s u r e d r e g a r d i n g t h e i r k n o w l e d g e o f t h e c h i l d ' s c o n d i t i o n and how t o c a r e f o r t h e c h i l d once home. R e a s s u r i n g i n f o r m a t i o n i n c l u d e d t h e s i g n s and symptoms t h a t w o u l d i n d i c a t e a d e t e r i o r a t i o n i n t h e i r c h i l d ' s c o n d i t i o n . F: W e l l , t h e y s a i d t h a t h e r a p p e t i t e m i g h t n o t be 52 t h a t g r e a t and when i t g o t o n t o t h e p o i n t where t h e y m i g h t t h i n k she n e e d s an o p e r a t i o n — t h i n g s l i k e t h a t — h e r a p p e t i t e . . M: She w o u l d n ' t s l e e p — t h e y s a i d t h a t she p r o b a b l y w o u l d n ' t s l e e p v e r y much, she w o u l d n ' t e a t and he s a i d we'd r e a l l y n o t i c e a c h a n g e . I t w o u l d n ' t be l i k e a sudden t h i n g and t h a t we'd have t o t a k e h e r i n r i g h t away. I t w o u l d be g r a d u a l o v e r a week o r two. He s a i d t h a t we'd n o t i c e h e r s o r t o f d e t e r i o r a t i n g a b i t . M: The n u r s e s down a t [ t e r t i a r y h o s p i t a l ] were e x c e l l e n t and t h e y t o l d us a l o t a b o u t what t o l o o k f o r i n B r e n t , l i k e when we were t a k i n g him home....remember when t h e y e x p l a i n e d a b o u t what t o l o o k f o r when he g o t c o n g e s t e d . F: They were r e a l l y g o o d . M: A b o u t t h e f i n g e r n a i l beds and t h a t . So we f o u n d t h a t was r e a l l y h e l p f u l b e c a u s e e v e r y d a y we'd c h e c k h i s f i n g e r n a i l s . F: H i s l i p s — t h e c o l o u r o f h i s l i p s . M: I n s i d e t h e m o u t h — t h e y s a i d i n s i d e t h e mouth r e a l l y s h o w s , y o u know, i f h e ' s g o i n g b l u e , t h a t ' s where i t i s , um. The p a r e n t s a p p r e c i a t e d t h i s i n f o r m a t i o n . P e r h a p s i t g a v e them some s e n s e o f c o n t r o l i n a s i t u a t i o n w h i c h o f t e n made them f e e l q u i t e h e l p l e s s . When h e a l t h c a r e p r o f e s s i o n a l s made an e f f o r t t o t e a c h p a r e n t s a b o u t c a r i n g f o r t h e i r n e w b o r n , t h e i r a n x i e t y was r e d u c e d . P a r t i c i p a t i n g i n t h e i n f a n t ' s c a r e w h i l e i n h o s p i t a l was p a r t i c u l a r l y i m p o r t a n t t o t h e two s e t s o f f i r s t - t i m e p a r e n t s . They were a l r e a d y u n s u r e o f t h e i r s k i l l s as new p a r e n t s . T h i s i n s e c u r i t y was t h e n a g g r a v a t e d by h a v i n g t o l e a r n t o c a r e f o r an i n f a n t w i t h a s e r i o u s c o n g e n i t a l h e a r t d e f e c t . 53 M: They were j u s t r e a l l y p a t i e n t b e c a u s e I mean when he was a t [ t e r t i a r y h o s p i t a l ] - - I n e v e r e v e n , I mean, I d i d n ' t r e a l l y h a v e t h a t much t o do w i t h b a b i e s b e f o r e he was b o r n and t h e y w o u l d n ' t e v e n l e t me r e a l l y t o u c h him when he was o u t h e r e ( a t community h o s p i t a l ) . So, I ' d n e v e r even c h a n g e d him and t h a t , s o , I was l i k e - - b u t t h e y were r e a l l y p a t i e n t and y o u know, ( n e r v o u s g i g g l e ) k i n d o f s h o w i n g me what t o do and t h a t ' c a u s e I d i d n ' t — y o u know, most m o t h e r s a t l e a s t g e t a few days j u s t t o p r a c t i c e t h a t k i n d o f t h i n g and I d i d n ' t . T h a t was n i c e . I l i k e t h e a t m o s p h e r e down t h e r e t h a t t h e y d o n ' t mind t h a t you c h a n g e t h e i r d i a p e r s and do w h a t e v e r you c a n do w i t h y o u r baby i n s t e a d o f j u s t l e a v i n g i t up t o t h e n u r s e s . So I r e a l l y f i n d t h a t makes i t n o t so much l i k e b e i n g i n a h o s p i t a l . . . . I t k i n d o f showed me i n t h e h o s p i t a l t h a t e v e n t h o u g h t h e y ' r e d e l i c a t e t h e y ' r e n o t as f r a g i l e as you f i r s t t h i n k t h e y a r e . L i k e when you w a t c h t h e n u r s e s t h a t have t o h a n d l e t h e b a b i e s - - I d o n ' t know how many b a b i e s e v e r y d a y — t h a t y o u r e a l i z e t h a t you d o n ' t have t o t r e a t them l i k e t h e y ' r e a p i e c e o f g l a s s o r s o m e t h i n g . Thus f o r some f a m i l i e s , t h e h o s p i t a l i z a t i o n was l o n g enough f o r them t o g a i n a m e a s u r e o f c o m f o r t i n c a r i n g f o r t h e i r c h i l d b u t f o r o t h e r s t h i s i n i t i a l h o s p i t a l i z a t i o n was a m a t t e r o f o n l y a few d a y s . As a r e s u l t , t h e y had v e r y l i t t l e t i m e t o d e a l w i t h t h e i r s h o c k and u n c e r t a i n t y . T h i s t h e n had i m p l i c a t i o n s f o r how t h e y f e l t o n c e t h e y had t h e i n f a n t home. A d j u s t i n g t o C a r i n g f o r C h i l d Once Home A g a i n , u n c e r t a i n t y was a s i g n i f i c a n t a s p e c t o f t h i s f a c e t o f t h e e x p e r i e n c e and a r o s e when t h e p a r e n t s f o u n d t h e m s e l v e s "on t h e i r own" w i t h t h e i n f a n t . Not h a v i n g h e a l t h c a r e p r o f e s s i o n a l s i m m e d i a t e l y a v a i l a b l e l e d t o a n x i e t y . A l t h o u g h t h o s e p a r e n t s who had a n o t h e r c h i l d d i d f e e l some d e g r e e o f c o m p e t e n c e i n c a r i n g f o r a n o r m a l b a b y , t h e y f e l t u n c e r t a i n t y and f e a r a b o u t c a r i n g f o r t h e i l l 54 i n f a n t . F o r t h e two s e t s o f f i r s t - t i m e p a r e n t s t h e d e g r e e o f u n c e r t a i n t y was e v e n more p r o n o u n c e d . The p a r e n t s a l l had c o n t a c t w i t h b o t h p h y s i c i a n s and c o mmunity h e a l t h n u r s e s d u r i n g t h i s f a c e t . R e a c t i o n s t o t h e i r i n t e r a c t i o n s w i t h t h e s e h e a l t h c a r e p r o f e s s i o n a l s w i l l a l s o be d e s c r i b e d . U n c e r t a i n t y . Most o f t h e p a r e n t s had been a d v i s e d by t h e d o c t o r s t o t r e a t t h e b aby l i k e any n o r m a l c h i l d . M: Then he s a i d , " f i r s t o f a l l t r e a t y o u r c h i l d l i k e you done t h e f i r s t one and i t ' s good t h a t you h a v e a n o t h e r one b e c a u s e t h e n y o u know what i t ' s a l l a b o u t . " He s a i d , " d o n ' t t r e a t him d i f f e r e n t l y . L e t him c r y i f t h a t ' s what you do w i t h y o u r c h i l d r e n . Don't p i c k h i m up r i g h t away. L e t him c r y f o r a l i t t l e w h i l e . J u s t c h e c k t h a t , y o u know, he's n o t f a i n t i n g on y o u . I f i t ' s j u s t s u d d e n l y s t o p p i n g and i t ' s q u i e t i n t h e r e , t h e n you b e t t e r c h e c k . " T h i s a d v i c e was n o t a l w a y s e a s y t o f o l l o w b e c a u s e w i t h i t o f t e n came p r e c a u t i o n a r y w o rds a b o u t symptoms t o w a t c h f o r , p o s s i b l y i n d i c a t i n g a d e t e r i o r a t i o n i n t h e c h i l d ' s c o n d i t i o n . M: The t h i n g s t h a t t h e d o c t o r t o l d you l i k e , "be p r e p a r e d , i f s h e ' s b l u e t o o l o n g go t o t h e h o s p i t a l w i t h h e r . W atch o u t f o r c o l d s " and a l l t h i s . And you s o r t o f t h i n k , 'when do I t a k e h e r t o t h e d o c t o r ? ' Y o u ' r e w a t c h i n g — i s she b l u e o r i s i t j u s t . . M: Um, a t f i r s t , l i k e I s a i d , a t f i r s t I was s c a r e d . I mean I j u s t - - l i k e e v e r y m i n u t e , y o u know, make s u r e he's s t i l l b r e a t h i n g and t h a t , ' c a u s e I , I d i d n ' t — I j u s t had no i d e a what t o e x p e c t . And a h , and t h e n t h e y t a l k e d a b o u t um ( p a u s e ) — w h a t ' s t h a t when t h e y g e t c o n g e s t i o n — w h a t do t h e y c a l l i t ? 55 I : C o n g e s t i v e h e a r t f a i l u r e ? M: Ya! That word — t h e word s o u n d s so ominous — l i k e o h h , y o u know, i f he has t h a t — a n d you know, y o u j u s t t h i n k t h a t i t ' s gonna happen l i k e , w i t h i n an h o u r , h e ' s gonna have i t . And you know, t h a t was more o r l e s s e x p l a i n e d t o us t h a t l t - - i t d o e s n ' t happen t h a t f a s t , l i k e i t ' s o v e r , y o u know, a t l e a s t a few d a y s t h a t i t b u i l d s up. P a r e n t s were c o n f u s e d a b o u t how e x a c t l y t o t r e a t t h e i r c h i l d r e n when t h e i n s t r u c t i o n s g i v e n by p h y s i c i a n s were o f t e n p a r a d o x i c a l . They were t o l d on t h e one hand t o t r e a t t h e i r c h i l d r e n "as n o r m a l " b u t a t t h e same t i m e t o w a t c h o u t f o r s p e c i f i c symptoms i n d i c a t i n g t h a t t h e y were n o t n o r m a l . T h i s c o n f u s i o n was f u r t h e r compounded by i n s t r u c t i o n s g i v e n by n u r s e s on what u n t o w a r d symptoms t o l o o k f o r . A l t h o u g h most p a r e n t s seemed t o f e e l somewhat a s s u r e d t h a t t h e y c o u l d d e t e c t s u c h symptoms, w h i c h f a c i l i t a t e d b r i n g i n g t h e baby home, t h e y were u n c e r t a i n a b o u t t h e i r a b i l i t y t o j u d g e t h e r e l a t i v e s e r i o u s n e s s o f t h e s e symptoms and t h u s a c t a p p r o p r i a t e l y . Sometimes p a r e n t s a l s o g o t c o n f l i c t i n g m e s s a g e s f r o m t h e t y p e o f c a r e r e c e i v e d by t h e c h i l d i n t h e h o s p i t a l . One i n f a n t s p e n t t h r e e d a y s i n t h e ICU and was s e n t d i r e c t l y home f r o m t h e r e . T h e r e f o r e , i t was d i f f i c u l t f o r t h e p a r e n t s t o t r e a t t h e i n f a n t "as n o r m a l " when t h i s was n o t how she was t r e a t e d i n t h e h o s p i t a l . M: We s o r t o f were l e a r y a b o u t t a k i n g h e r home b e c a u s e we d i d n ' t know what t o do w i t h h e r - -b e c a u s e when she was i n t h e h o s p i t a l she was a l l m o n i t o r e d . She had l e a d s on h e r c h e s t and she had t h e n u r s e s w a t c h i n g h e r a l l t h e t i m e and I t h o u g h t ' w e l l , a r e we g o i n g t o be a b l e t o j u s t b r i n g h e r home and l e t h e r b e ' and he s a i d , "oh y e a h , j u s t t r e a t h e r l i k e a n o r m a l c h i l d . " 56 T h i s c o u p l e were f o r c e d t o d e a l w i t h c a r i n g f o r t h e i r i n f a n t when t h e y were b a r e l y o v e r t h e s h o c k o f l e a r n i n g a b o u t t h e d i a g n o s i s . A l s o , t h e f a c t t h a t t h e y had v e r y l i t t l e t i m e t o g e t us e d t o t h e i n f a n t ' s b e h a v i o u r b e f o r e t a k i n g h e r home e x a c e r b a t e d t h e i r u n c e r t a i n t y . T h i s i s how t h e f a t h e r d e s c r i b e d t h e i r f e e l i n g s o n c e t h e y had t h e i n f a n t home. F: W e l l a t f i r s t , y o u t h i n k t h a t s h e ' s g o i n g t o - -y o u ' r e so c o n s c i o u s o f e v e r y n o i s e i n t h e bedroom when y o u ' r e s l e e p i n g a t n i g h t . I f y o u h a v e n ' t h e a r d f r o m h e r f o r an h o u r o r two y o u ' r e s c a r e d t h a t s h e ' s maybe d i e d on us o r s o m e t h i n g . T h a t was o u r b i g g e s t w o r r y was w h e t h e r she had t o be c o n t i n u a l l y w a t c h e d and r e a l l y p a m p e r e d , o r — b u t as we g o t h e r home and as e a c h day went by and she was a c t i n g l i k e a n o r m a l baby we r e a l i z e d t h a t she d i d n ' t have t o be pampered q u i t e so much as we were e x p e c t i n g . The t h i n g s t h a t t h e y s a i d m i g h t happen w e r e n ' t h a p p e n i n g . L i k e she was g a i n i n g w e i g h t and e v e r y t h i n g was g o i n g a l o n g s m o o t h l y and e v e r y t i m e we t o o k h e r b a c k f o r a c h e c k u p t h e d o c t o r s k e p t s a y i n g she was d o i n g g r e a t . T h u s , some p a r e n t s were a b l e t o g r a d u a l l y f e e l more c o m f o r t a b l e w i t h t h e i r c h i l d r e n o n c e t h e y had o b s e r v e d t h e i r " n o r m a l " b e h a v i o u r and been r e a s s u r e d by t h e p h y s i c i a n s a b o u t t h e i r p r o g r e s s . F e a r f o r t h e i n f a n t ' s s a f e t y a c c o m p a n i e d t h e p r e d o m i n a n t e m o t i o n o f u n c e r t a i n t y d u r i n g t h i s f a c e t o f t h e e x p e r i e n c e . P a r e n t s d e a l t w i t h t h i s by " b e i n g v i g i l a n t . " I n t h e m e a n t i m e , h o w e v e r , p a r e n t s d i d n o t f o r g e t t h e h e a l t h c a r e p r o f e s s i o n a l s ' a d v i c e t o t r e a t t h e i r c h i l d r e n "as n o r m a l , " t h e r e f o r e p a r e n t s u s u a l l y t r i e d t o n o r m a l i z e t h e s i t u a t i o n as s o o n as t h e y f e l t more c o m f o r t a b l e w i t h t h e i n f a n t . These two o p p o s i n g s t r a t e g i e s o f " b e i n g v i g i l a n t " 57 and " n o r m a l i z i n g " w i l l be d i s c u s s e d i n d e t a i l i n t h e c o p i n g s t r a t e g i e s s e c t i o n . I n t e r a c t i o n s w i t h h e a l t h c a r e p r o f e s s i o n a l s . D u r i n g t h i s f a c e t o f " a d j u s t i n g t o c a r i n g f o r c h i l d o nce home," p a r e n t s were o f t e n i n c o n t a c t w i t h s e v e r a l p h y s i c i a n s and a co m m u n i t y h e a l t h n u r s e . The p h y s i c i a n s seemed t o be t h e p r i m a r y p r o v i d e r s o f h e a l t h c a r e and p a r e n t s l o o k e d t o them f o r i n f o r m a t i o n and s u p p o r t . V i s i t s by t h e co m m u n i t y h e a l t h n u r s e were n o t u s u a l l y d e s c r i b e d by p a r e n t s u n l e s s t h e s u b j e c t was b r o u g h t up by t h e i n v e s t i g a t o r , a l t h o u g h a l l t h e f a m i l i e s had had v i s i t s s h o r t l y a f t e r t h e i n f a n t was b r o u g h t home. These v i s i t s were n o t p a r t i c u l a r l y h e l p f u l t o most m o t h e r s . G e n e r a l l y , f a t h e r s were n o t a t home a t t h e t i m e o f t h e v i s i t s so t h e y had n o t h i n g t o add on t h e s u b j e c t . M: She was good (no e n t h u s i a s m i n v o i c e ) . I t ' s j u s t t h a t she seemed more c o n c e r n e d a b o u t o t h e r t h i n g s l i k e m a k i n g s u r e he g o t i m m u n i z e d and m a k i n g s u r e he g o t t h i s and t h a t and I t h o u g h t , y o u know--I know i t ' s i m p o r t a n t b u t r i g h t now I d o n ' t want t o r e a l l y c o n c e r n m y s e l f w i t h t h a t . I : T h i n g s o t h e r t h a n t h e h e a r t p r o b l e m , y o u mean? M: Uh h u h . The c h i l d ' s h e a r t c o n d i t i o n was f o r e m o s t i n t h i s m o t h e r ' s mind b u t h e r c o n c e r n s were n o t p r o p e r l y a d d r e s s e d by t h e n u r s e . A n o t h e r m o t h e r commented a b o u t t h e n u r s e ' s a p p a r e n t l a c k o f k n o w l e d g e r e g a r d i n g h e r c h i l d ' s h e a r t p r o b l e m . I : What d i d she do? M: N o t h i n g r e a l l y . She w e i g h e d h e r and she j u s t a s k e d i f I had any q u e s t i o n s a b o u t f e e d i n g and t h a t was a b o u t i t . She r e a l l y w a s n ' t a l o t o f 58 h e l p b u t I g u e s s she was j u s t t h e r e i n c a s e I d i d have any q u e s t i o n s . See we were g o i n g t o t h e d o c t o r r e g u l a r l y so she r e a l l y d i d n ' t need t o come o v e r . We were s e e i n g some k i n d o f a d o c t o r o n c e e v e r y c o u p l e o f w e e k s . She was g e t t i n g w e i g h e d r e g u l a r l y a t t h e d o c t o r s . I : So you were g e t t i n g y o u r q u e s t i o n s a n s w e r e d t h e r e were you? M: Y e a h . And p l u s t h e n u r s e t h a t c a m e — s h e d i d n ' t know a l o t a b o u t , y o u know, what was h a p p e n i n g wi t h h e r . I : I n t e r m s o f h e r h e a r t p r o b l e m ? M: Y e a h , s h e ' s j u s t y o u r b a s i c h e a l t h n u r s e so she d i d n ' t g e t i n t o a n y t h i n g . The o v e r l a p o f s e r v i c e s w h i c h i s a l l u d e d t o by t h i s m o t h e r was m e n t i o n e d by s e v e r a l o t h e r s . " T r u s t i n g h e a l t h c a r e p r o f e s s i o n a l s " was an i m p o r t a n t c o p i n g s t r a t e g y f o r t h e p a r e n t s , as w i l l be d i s c u s s e d i n more d e p t h l a t e r . When t h e n u r s e s had t h e i r own a g e n d a s and d i d n o t a d d r e s s t h e m o t h e r s ' c o n c e r n s , i t was d i f f i c u l t t o e s t a b l i s h a t r u s t i n g r e l a t i o n s h i p . A l s o , p e r h a p s some p a r e n t s f e l t more c o m f o r t a b l e w i t h a p h y s i c i a n t h e y a l r e a d y knew who was m e e t i n g t h e i r n e eds f o r i n f o r m a t i o n and s u p p o r t . L i v i n g w i t h a C h i l d w i t h a C h r o n i c C o n d i t i o n The p e r i o d of t i m e f r o m i n i t i a l d i a g n o s i s t o c o r r e c t i v e s u r g e r y r a n g e d f r o m f o u r months t o a p p r o x i m a t e l y t h r e e y e a r s f o r t h e c h i l d r e n i n t h i s s t u d y . As a r e s u l t o f t h i s somewhat l e n g t h y d u r a t i o n , t h e t e r m c h r o n i c c a n be u s e d t o d e s c r i b e t h e i r c o n d i t i o n s . Once t h e f a m i l i e s g o t o v e r t h e i n i t i a l p e r i o d when most o f t h e i r e n e r g y was f o c u s e d on c a r i n g f o r t h e i n f a n t , t h e y had t o work o u t some 59 p a t t e r n o f f a m i l y l i v i n g w h i c h c o u l d i n c o r p o r a t e t h e n e e d s o f t h e i l l c h i l d w h i l e a t t h e same t i m e m e e t i n g t h e n e e d s o f t h e o t h e r f a m i l y members. P a r e n t s t a l k e d a b o u t t h e "ups and downs" o f t h e i r e x p e r i e n c e . T h i s s e c t i o n w i l l show how t h e p a r e n t s f e l t d u r i n g t h i s p a r t o f t h e t r a n s i t i o n p e r i o d and what c o n s t i t u t e d h i g h s and l o w s f o r them. M a j o r a l t e r a t i o n s i n l i f e s t y l e . A l l f a m i l i e s had t o make some a l t e r a t i o n s i n t h e i r l i v e s as a r e s u l t o f t h e c h i l d ' s c o n d i t i o n . When t h e i n f a n t s showed o b v i o u s symptoms, t h e a l t e r a t i o n s were o f a g r e a t e r m a g n i t u d e . H a l f o f t h e p a r e n t s had f a l l e n i n t o t h e h a b i t o f p i c k i n g t h e i r i n f a n t s up a l m o s t i m m e d i a t e l y i f t h e y s t a r t e d t o c r y . The i n f a n t s g o t u s e d t o t h i s p a r e n t a l r e s p o n s e and t h e p a r e n t s f o u n d i t h a r d t o b r e a k , i f t h e y wanted t o , a f t e r t h e i n i t i a l p e r i o d o f a d j u s t m e n t . T h i s was t i r i n g and f r u s t r a t i n g f o r them as i l l u s t r a t e d by t h i s a c c o u n t . M: L i k e I s a i d , h e ' s s t i l l — h e ' s s p o i l e d . L i k e o t h e r b a b i e s , y o u j u s t l a y 'em down and t h e y go t o s l e e p , b u t he l i k e s t o be r o c k e d t o s l e e p and you h ave t o w a l k a r o u n d u n t i l he f a l l s a s l e e p most o f t h e t i m e . I : How do you f e e l a b o u t t h a t ? M: Sometimes I g e t mad. I t h i n k , 'why c a n ' t y o u j u s t go t o s l e e p l i k e any o t h e r b a b y ? ' You know, I u n d e r s t a n d t h a t he was--he g o t t h a t e x t r a a t t e n t i o n f o r so l o n g t h a t we j u s t c a n ' t c u t i t o f f . We j u s t do i t . We t a k e t u r n s . F: Y a , we have t o t a k e t u r n s ! One m o t h e r , i n p a r t i c u l a r , had a d i f f i c u l t t i m e j u g g l i n g t h e demands o f h e r c h i l d r e n , h u s b a n d and home. 60 M: You know, you pu t him down and h e ' l l s l e e p f o r t w e n t y m i n u t e s w h e r e a s s h e ' d s l e e p f o r y o u r r e g u l a r two h o u r s — two h o u r s i n t h e m o r n i n g and two h o u r s i n t h e a f t e r n o o n — w h e r e a s he w o u l d n ' t do t h a t . T h a t ' s when I r e a l l y s t a r t e d g e t t i n g d i s o r g a n i z e d and I f e l t t h i n g s were r e a l l y f a l l i n g a p a r t a r o u n d m e — y o u know, h o u s e w i s e — s t u f f l i k e t h a t - - t i m e w i t h h e r and t h a t . I ' d s e t a s i d e an a f t e r n o o n t o do a r t s and c r a f t s w i t h h e r , y o u know — r e a l l y c o u l d n ' t b e c a u s e he was so u n p r e d i c t a b l e . But a h , l i k e t h e s t r a i n comes o u t when you s t a r t s n a p p i n g , " w e l l , why d i d n ' t y o u — I a s k e d you t o do t h i s t o d a y ? " " W e l l , I d i d n ' t have t i m e . " Then you d o n ' t r e a l i z e t h a t t h e o t h e r p a r t n e r d i d n ' t have t i m e b e c a u s e t h e y ' r e w a l k i n g a r o u n d t h e house a l l d a y , t r y i n g t o c a l m him down and t h a t , y o u know, l i k e I'm t i r e d t o n i g h t . . . The i n f a n t ' s u n p r e d i c t a b l e b e h a v i o u r l e d t h i s m o t h e r t o f e e l d i s o r g a n i z e d and u n a b l e t o meet h e r d a u g h t e r ' s n e e d s and k e e p up w i t h h o u s e h o l d demands. She seemed t o have t h e most d i f f i c u l t t i m e o f a l l t h e p a r e n t s b e c a u s e h e r i n f a n t was more i r r i t a b l e t h a n t h e o t h e r s . The two m o t h e r s who had p l a n n e d t o go b a c k t o work f u l l - t i m e a f t e r t h e i r m a t e r n i t y l e a v e s c h a n g e d t h e i r p l a n s . M: I c o u l d n ' t see m y s e l f g o i n g b a c k t o work w o n d e r i n g , i f you know, what was g o i n g on and f i n d somebody who w o u l d n ' t s o r t a g e t s c a r e d o r be p h o n i n g m e — y o u know, a t w o r k — s a y i n g , y o u know, "he's c r y i n g o r he's t u r n i n g , y o u know, b l u e " and t h a t . M: I was p l a n n i n g on g o i n g b a c k t o w o r k , and i t ' s j u s t — h e seems t o t a k e so much t i m e — l i k e he n e e d s t h a t e x t r a a t t e n t i o n a n d , and he's d o i n g w e l l w i t h h i s m o t o r s k i l l s and t h a t . But l i k e t h e p e d i a t r i c i a n s a y s , i t ' s p r o b a b l y j u s t b e c a u s e we s p end t h e t i m e w i t h him and n o t j u s t l a y h i m down somewhere and e x p e c t him t o o c c u p y h i m s e l f , t y p e o f t h i n g . So i n t h a t way, I t h i n k , w e l l , maybe i t ' s j u s t b e t t e r t o s t a y a t home w i t h him and t h e n a g a i n I t h i n k t h a t i f I g e t a j o b t h e n when he has a n o t h e r o p e r a t i o n he m i g h t be i n f o r a l o n g e r t i m e and I want t o be t h e r e . So you know, i n t h a t way i t ' s c h a n g e d . 61 I t seemed t h a t t h e s e m o t h e r s had w o r k e d t o m a i n t a i n a c e r t a i n i n c o m e and t h e j o b s t h e m s e l v e s were n o t d e s c r i b e d as p a r t i c u l a r l y f u l f i l l i n g . By s t a y i n g home w i t h t h e i r i n f a n t s t h e s e m o t h e r s c o u l d r e a s s u r e t h e m s e l v e s t h a t t h e i n f a n t s were g e t t i n g t h e needed a t t e n t i o n . T h i s was t h e p r e f e r r e d a l t e r n a t i v e t o c o n s t a n t l y w o r r y i n g a b o u t t h e c h i l d w h i l e a t w o r k . A few o f t h e f a m i l i e s d i d n o t have t o a l t e r t h e i r l i v e s v e r y much t o accommodate t h e i l l c h i l d r e n b e c a u s e t h e s e c h i l d r e n had few o b v i o u s symptoms o f t h e d i s e a s e . However, f o r a l l o f t h e p a r e n t s r e m i n d e r s o f t h e i r c h i l d ' s c o n d i t i o n came i n t h e f o r m o f f e e d i n g p r o b l e m s , f r e q u e n t v i s i t s t o t h e d o c t o r , q u e s t i o n s f r o m r e l a t i v e s and f r i e n d s , and h o s p i t a l i z a t i o n s f o r c a r d i a c c a t h e t e r i z a t i o n . F e e d i n g d i f f i c u l t i e s . A l l b u t one f a m i l y commented on how t i m e - c o n s u m i n g i n f a n t f e e d i n g was. I n s e v e r a l i n s t a n c e s , t h i s s u b j e c t was n o t b r o u g h t up by t h e p a r e n t s b u t was i n t r o d u c e d by t h e i n t e r v i e w e r b e c a u s e o t h e r p a r e n t s ' a c c o u n t s had p o i n t e d t o i t s i m p o r t a n c e as p a r t o f t h e e x p e r i e n c e . M: I t h i n k t h a t i f he was, y o u know, c o m p l e t e l y n o r m a l he a h , w o u l d p r o b a b l y t a k e i n h i s f u l l q u o t a a t n i g h t and w o u l d s l e e p t h r o u g h t h e n i g h t by now. W h e r e a s , he o n l y - p r o b a b l y t a k e s a b o u t maybe t h r e e - q u a r t e r s o f what he w o u l d — w h a t he c a n t a k e . So, he wakes up a t 12 o ' c l o c k , t a k e s a l i t t l e b i t more t h e n nods o f f b e c a u s e he's t i r e d and t h e n h e ' l l wake up a g a i n maybe a t 3 o ' c l o c k f o r a l i t t l e b i t more... Some m o t h e r s were a l m o s t d e f e n s i v e and seemed t o need t o m i n i m i z e t h e i r i n f a n t ' s p r o b l e m s w i t h f e e d i n g . 62 F: One o f us w i l l s i t t h e r e f o r h a l f an ho u r o r more and g i v e him t h e b o t t l e as he w a n t s i t . E v e n t u a l l y h e ' l l d r i n k t h e b o t t l e . Sometimes i t d o e s n ' t h a p p e n — s o m e t i m e s he does i t i n f i v e m i n u t e s and s o m e t i m e s i t t a k e s h i m an ho u r t o d r i n k i t . . . I : So, i t i s t i m e - c o n s u m i n g . F: S o m e t i m e s , s o m e t i m e s h e ' l l down i t — o t h e r t i m e s . . M: W e l l , l o o k a t n u r s i n g b a b i e s . You know, n u r s i n g b a b i e s - - y o u h a v e y o u r baby on y o u r b r e a s t a l l day 1 ong . One m o t h e r i n d i c a t e d d u r i n g t h e f i r s t i n t e r v i e w t h a t t h e r e were no p r o b l e m s w i t h f e e d i n g . M: Y e a h , she e a t s r e a l l y w e l l . As you c a n t e l l , s h e ' s n o t s t a r v i n g . I n a c t u a l f a c t t h i s baby l o o k e d q u i t e s m a l l f o r h e r a g e . T h i s m o t h e r c o n t r a d i c t e d h e r s e l f i n a s u b s e q u e n t i n t e r v i e w , done a f t e r t h e p a l l i a t i v e s u r g e r y . M: We n o t i c e d b e f o r e she w o u l d a h - - s h e w o u l d n ' t d r i n k a w h o l e b o t t l e . She'd g e t k i n d o f t i r e d and s h e ' d push i t away b u t now she c a n e a t q u i t e a b i t . She s t i l l d o e s n ' t d r i n k much more t h a n f o u r o u n c e s b u t a h , s h e ' s e a t i n g n o w — s o l i d s now... F o r a n o t h e r m o t h e r , f e e d i n g and w e i g h t g a i n were m a j o r c o n c e r n s and t h e s e i s s u e s were b r o u g h t up numerous t i m e s t h r o u g h t h e c o u r s e o f t h e two i n t e r v i e w s . M: W e l l , he was k i n d o f a h a r d baby b e c a u s e he w a s n ' t e a t i n g a l l t h a t w e l l , and t h e y , y o u know, t h e y — I s a i d , " w e l l , s h o u l d I b r e a s t - f e e d him o r b o t t l e f e e d h i m ? " And t h e y s a i d , " w e l l t h e b r e a s t m i l k i s t h e b e s t , b u t i t ' s h a r d e r f o r h i m — l i k e he's g o t t a work h a r d e r t o g e t i t . " So i t was, a l w a y s one way o r a n o t h e r and w i t h b r e a s t - f e e d i n g , I d i d n ' t know how much he was g e t t i n g , and he w a s n ' t f e e d i n g w e l l . So, I f o u n d - - I was j u s t - - r e a l l y g e t t i n g , r e a l l y — b e c a u s e he was so s m a l l and I w a n t e d him t o e a t . . . 63 From t h i s d a t a , i t seems t h a t s a t i s f a c t o r y i n f a n t f e e d i n g and w e i g h t g a i n a r e i m p o r t a n t t o a m o t h e r ' s f e e l i n g s o f a d e q u a c y a b o u t h e r a b i l i t y t o p a r e n t . T h i s i s p e r h a p s why s e v e r a l o f t h e s e m o t h e r s f e l t a need t o m i n i m i z e t h e i r i n f a n t ' s d i f f i c u l t i e s . D w e l l i n g on " i t " . S e v e r a l p a r e n t s f o u n d t h e m s e l v e s d w e l l i n g on " i t , " m e a n i n g t h e i r c h i l d ' s c o n d i t i o n . One m o t h e r made s e v e r a l r e f e r e n c e s t o f e e l i n g d e p r e s s e d when t h i n k i n g a b o u t h e r c h i l d ' s f u t u r e . M: You s t i l l a l w a y s t h i n k a b o u t i t . L i k e s o m e t i m e s I j u s t s i t t h e r e and g e t a l l d e p r e s s e d b e c a u s e you t h i n k t h a t — k n o w i n g w h a t ' s g o i n g t o have t o h a p p e n . T h i s o p e r a t i o n , he s a y s i s f a i r l y r o u t i n e . I t ' s t h e n e x t one t h a t ' s t h e b i g g y b u t we j u s t have t o t a k e e a c h one as t h e y come. You hav e t o — y o u have no c h o i c e . T h i n k i n g a b o u t " i t " s o m e t i m e s i n t e r f e r e d w i t h w o r k . F: I t comes o u t m o s t l y i n my work. I f i n d t h a t I make a l o t o f m i s t a k e s . . . I j u s t f i n d t h a t I seem to t h i n k a l o t more, y o u know. I ha v e a l o t more t r o u b l e c o n c e n t r a t i n g on d o i n g r e a l l y s p e c i f i c t a s k s and a h . I : Do you f i n d y o u r mind w a n d e r i n g t o o ? F: M i n d w a n d e r i n g ! Y e s , t h a t ' s what I mean! Y a , i t j u s t goes o f f and I s t a r t t h i n k i n g a b o u t him o r , yo u know, s t a r t t h i n k i n g a b o u t t h e s u r g e r y . . . The p a r e n t s were o f t e n r e m i n d e d o f t h e i r c h i l d ' s c a r d i a c - r e l a t e d c h a r a c t e r i s t i c s and b e h a v i o u r p a t t e r n s by f a m i l y , f r i e n d s , h e a l t h p r o f e s s i o n a l s and even s t r a n g e r s . I : So t h a t ' s s o m e t h i n g you n o t i c e now o r i s t h a t s o m e t h i n g y o u ' v e a l w a y s n o t i c e d ? M: W e l l , I t h i n k p e o p l e made me aware o f i t b e c a u s e t h a t ' s t h e o n l y t i m e I ' v e h e a r d p e o p l e r e a c t , y o u know, t e l l i n g me "have y o u h e a r d how h e ' s 64 b r e a t h i n g when he's e a t i n g ? " I : These a r e f r i e n d s ? M: Y e a h , t h e s e a r e f r i e n d s . You know, when we're t o g e t h e r f o r l u n c h o r s o m e t h i n g . U n t i l t h e y made me aware o f i t , I d i d n ' t r e a l l y know b u t t h e n o f c o u r s e y o u t h i n k a b o u t i t . . . T hese r e m i n d e r s s o m e t i m e s made p a r e n t s a n g r y , e s p e c i a l l y when t h e y were t r y i n g h a r d n o t t o t h i n k a b o u t t h e i r c h i l d ' s c o n d i t i o n . M: But you f i n d y o u r s e l f e x p l a i n i n g a l o t , l i k e e v e n , when I go o u t - - " h e seems so s m a l l " - - y o u ' r e put on t h e d e f e n s i v e r i g h t away. You know, e v e n s t r a n g e r s , y o u d o n ' t want t o t e l l them, "o h , my baby has a h e a r t d e f e c t " b u t you want t o somehow s a y s o m e t h i n g , so I was a l i t t l e b i t mad. 1 u s e d t o g e t a n g r y a t e v e r y o n e t h a t s a i d a n y t h i n g . D w e l l i n g on " i t " was s o m e t h i n g t h a t p a r e n t s t r i e d t o a v o i d b e c a u s e t h e y d i d n o t want t h o u g h t s a b o u t " i t " t o d e p r e s s them o r i n t e r f e r e w i t h t h e i r d a i l y a c t i v i t i e s . E x p l a i n i n g t o o t h e r s . Demands f o r e x p l a n a t i o n s a b o u t t h e c h i l d ' s d i a g n o s i s , p r o g n o s i s and t r e a t m e n t p l a n were s o m e t h i n g t h a t a l l p a r e n t s d e a l t w i t h . T h i s was n o t l i m i t e d t o t h e d i a g n o s i s f a c e t b u t o c c u r r e d t h r o u g h o u t t h e c o u r s e o f t h e i r e x p e r i e n c e . W h i l e f r i e n d s and f a m i l y were a t t i m e s r e a s s u r i n g and h e l p e d t h e p a r e n t s t o m a i n t a i n an o p t i m i s t i c a t t i t u d e , t h e r e were o t h e r i n s t a n c e s when t h e p a r e n t s had t o do t h e r e a s s u r i n g . M: ... b u t i n some ways i t ' s h a r d t o o b e c a u s e e v e r y t h i n g has t o be e x p l a i n e d and my mum t e n d s t o w o r r y a b i t more a b o u t B r e n t . W i t h us g o i n g t o t h e d o c t o r s and i t ' s e x p l a i n e d d i r e c t l y t o us and we k i n d o f u n d e r s t a n d i t b e t t e r . She s a y s , l i k e "oh my, h e ' s g o t t o go i n f o r a n o t h e r h e a r t c a t h . " When you e x p l a i n t o h e r what i t i s , i t j u s t s o u nds 65 so h o r r i b l e and " o h , i s i t g o i n g t o h u r t h i m ? " I f i n d l i k e I have t o r e a s s u r e h e r where I'm j u s t t r y i n g t o r e a s s u r e m y s e l f . F: W e l l , t h e r e ' s s t u f f t h a t g e t s l o s t i n t h e t r a n s l a t i o n , e h . You g e t p a n i c phone c a l l s . L i k e one m i n u t e we t e l l one g r a n d m o t h e r he's g o t a l i t t l e b i t o f a c o l d o r s o m e t h i n g . . M: Ya r i g h t ! And t h e n e x t d a y , t h e o t h e r g r a n d m o t h e r ' s p h o n i n g a n d . . F: What's wrong? Those f a m i l i e s who had o t h e r c h i l d r e n a l s o had t o e x p l a i n t o them what was wrong w i t h t h e i r s i b l i n g and why t h e y were s o m e t i m e s t r e a t e d d i f f e r e n t l y . M: She's had a p r o b l e m w i t h , t h a t he g o es t o t h e d o c t o r so o f t e n and she n e v e r does b e c a u s e s h e ' s n e v e r s i c k . . . And she g e t s t e r r i b l y u p s e t b e c a u s e he g e t s t o go t o t h e d o c t o r a l l t h e t i m e and she t h i n k s t h i s i s l o t s o f f u n . "Why i s n ' t t h i s h e r t u r n — w h y i s n ' t she g o i n g ? " M: We j u s t keep t e l l i n g h e r t h a t h e ' s , y o u know, t h a t he's n o t f e e l i n g a l l t h a t w e l l and t h a t he has a 1 b o o - b o o 1 h e a r t . " W e l l , where d i d he g e t h i s 'boo-boo' h e a r t ? " "He was b o r n w i t h i t . " B u t , i t ' s , i t ' s h a r d t o e x p l a i n t o a c h i l d t h a t young . . . I t was v e r y i m p o r t a n t t o t h e p a r e n t s t h a t p e o p l e u n d e r s t a n d t h e r e l a t i v e s e r i o u s n e s s o f t h e i r c h i l d ' s h e a r t c o n d i t i o n . They d i d n o t want p e o p l e t o o v e r e m p h a s i z e t h e i m p a c t o f t h e h e a r t p r o b l e m on t h e i r d a i l y l i v e s . M: J u s t e x p l a i n i n g t o r e l a t i v e s e x a c t l y what t h e p r o b l e m i s , y o u know, and l e t t i n g e v e r y b o d y know t h a t he's n o t as f r a g i l e as t h e y t h i n k he i s . You know, he's j u s t y o u r r e g u l a r b a b y , y o u know, r e a l l y . . . I t ' s as t h o u g h t h e y t h i n k h e ' l l be, w e l l he s h o u l d n ' t be d e v e l o p i n g as f a s t as he n o r m a l l y w o u l d i f he d i d n ' t have t h e h e a r t p r o b l e m . 66 A t t h e same t i m e t h e y d i d n o t want p e o p l e t o m i n i m i z e t h e s e r i o u s n e s s o f t h e u p c o m i n g c a r d i a c s u r g e r y . M: A c o u p l e o f t h e guys Mark w o r k s w i t h , t h e y see p i c t u r e s o f B r e n t t h a t Mark p u t s on h i s d e s k and t h a t - - a n d now i t ' s t h e t h i n g , "oh w e l l , i t ' s n o t t h a t s e r i o u s t h e n , i s i t ? " I t r e a l l y i s s e r i o u s and some o f them a r e h i s b o s s e s so t h e y r e a l l y s h o u l d know t h a t i f y o u a s k f o r t i m e o f f when he goes i n f o r s u r g e r y o r s o m e t h i n g t h a t i t i s s e r i o u s . I : So, y o u want them t o u n d e r s t a n d . You d o n ' t want them t o o v e r e m p h a s i z e . . M: I t e i t h e r seems t o be one way o r t h e o t h e r . I t ' s e i t h e r t h a t t h e y t a k e i t r e a l l y h a r d t h a t B r e n t ' s r e a l l y s i c k and p o o r Mark and Susan o r e l s e i t ' s t h e o p p o s i t e , l i k e maybe i t ' s j u s t a s l i g h t h e a r t murmur w h i c h i t I s n ' t e i t h e r , s o . Unc er t a i n t y . U n c e r t a i n t y d u r i n g t h i s f a c e t was p r o b a b l y n o t as o v e r w h e l m i n g an e m o t i o n as i t was d u r i n g t h e o t h e r t h r e e . H o wever, i t was p r e s e n t and became more o b v i o u s a t s p e c i f i c t i m e s . One t y p e o f u n c e r t a i n t y , a l r e a d y m e n t i o n e d , r e s u l t e d f r o m t h e i n f a n t s ' o f t e n u n p r e d i c t a b l e b e h a v i o u r . T h i s b e h a v i o u r was e v e n more e v i d e n t r i g h t a f t e r p a l l i a t i v e s u r g e r y . As a r e s u l t o f t h i s b e h a v i o u r , i t was s o m e t i m e s v e r y d i f f i c u l t f o r p a r e n t s t o p l a n f a m i l y a c t i v i t i e s . U n c e r t a i n t y a l s o r e v o l v e d a r o u n d n o t k n o w i n g how t h e c h i l d w o u l d d e v e l o p i n c o m p a r i s o n t o o t h e r c h i l d r e n and w h e t h e r p r e d i c t i o n s a b o u t d e v e l o p m e n t a l d e l a y s w o u l d come t r u e . T h i s w i l l be d i s c u s s e d i n t h e " a n t i c i p a t i n g t h e f u t u r e " c o p i n g s t r a t e g y s e c t i o n . At t h e t i m e o f d i a g n o s i s , t h e number and t i m i n g o f r e q u i r e d s u r g e r i e s was u s u a l l y n o t known f o r s u r e . K n o w l e d g e g a i n e d t h r o u g h s u b s e q u e n t h e a r t 67 c a t h e t e r i z a t i o n s c o u l d p o t e n t i a l l y d e c r e a s e t h e amount o f u n c e r t a i n t y a b o u t t h e s e e v e n t s . C a r d i a c c a t h e t e r i z a t i o n . F i v e o f t h e c h i l d r e n had had a t l e a s t one c a r d i a c c a t h e t e r i z a t i o n p r i o r t o d a t a c o l l e c t i o n . When a h e a r t c a t h e t e r i z a t i o n was d o n e , t h e p a r e n t s were o f t e n g i v e n more d e f i n i t i v e i n f o r m a t i o n a b o u t t h e s e v e r i t y o f t h e i r c h i l d ' s h e a r t c o n d i t i o n . Sometimes a c a t h e t e r i z a t i o n was n o t done i n t h e n e o n a t a l p e r i o d so p a r e n t s had t o w a i t f o r t h i s i n f o r m a t i o n . C a r d i a c c a t h e t e r i z a t i o n s were o f t e n done t o m o n i t o r a c h i l d ' s p r o g r e s s and d e t e r m i n e t h e a p p r o p r i a t e t i m i n g f o r f u t u r e s u r g e r y , b o t h p a l l i a t i v e and c o r r e c t i v e . F: T h a t was what o u r c o n c e r n was t h i s t i m e when D r . B. was t a l k i n g a b o u t d o i n g t h e h e a r t c a t h . was w h e t h e r t h e s u r g e r y i s g o i n g t o be r i g h t away o r w h e t h e r i t ' s j u s t t o see how t h i n g s a r e p r o g r e s s i n g . We f o u n d o u t i t ' s j u s t t o see how t h i n g s a r e p r o g r e s s i n g . I : How do you f e e l a b o u t t h a t ? F: Good, g o o d . I'm g l a d t o see t h e y ' r e m o n i t o r i n g i t . I t ' s n o t j u s t , "oh w e l l , w e ' l l w a i t and see when t h e y b r i n g him i n " t y p e o f t h i n g . P a r e n t s had c o n f i d e n c e i n t h e h e a l t h c a r e p r o f e s s i o n a l s when t h e y d e m o n s t r a t e d c o n c e r n a b o u t t h e c h i l d ' s p r o g r e s s i n t h i s manner. No m a t t e r what t h e r e a s o n was f o r t h e h e a r t c a t h e t e r i z a t i o n , most p a r e n t s l o o k e d f o r w a r d t o t h i s p r o c e d u r e b e c a u s e i t c o u l d h e l p e l i m i n a t e some o f t h e u n c e r t a i n t y t h e y were l i v i n g w i t h . M: The c a t h e t e r , t h a t ' s a b i g o n e , t h a t ' s a f i r s t s t e p . Once t h a t ' s o v e r w i t h , y o u know, t h e n a good p a r t o f i t i s o v e r w i t h — y o u know, b e c a u s e 68 we're h e a r i n g t h e news o f w h a t ' s g o i n g t o be h a p p e n i n g , h i s f u t u r e . P a l l i a t i v e s u r g e r y . T h r e e o f t h e s i x c h i l d r e n u n d e r w e n t p a l l i a t i v e s u r g e r y , one i n t h e n e o n a t a l p e r i o d and t h e o t h e r two l a t e r . F o r t h e two c o u p l e s who had been t o l d t h a t t h e i r c h i l d r e n w o u l d r e q u i r e p a l l i a t i v e s u r g e r y l a t e r , t h e r e was a p e r i o d b e f o r e t h e s u r g e r y when t h e y c o u l d see t h e i r c h i l d r e n s ' c o n d i t i o n s d e t e r i o r a t i n g t o some d e g r e e . T h i s was v e r y s t r e s s f u l f o r them. M: They e x p l a i n e d t o us a b o u t t h e b a n d i n g and you know, b e c a u s e o f what was w r o n g — w h y , y o u know, b e c a u s e o f t h e p r e s s u r e on h i s l u n g s and t h a t . . . we c o u l d even s e e , l i k e he'd be s l e e p i n g and he j u s t — h i s l i t t l e c h e s t w o u l d j u s t b e — y o u know, we c o u l d n ' t e v e n — w e ' d t r y t o c o u n t i t o u r s e l v e s and we c o u l d n ' t ' c a u s e he'd t a k e t h a t k i n d o f l i k e a deep s h u d d e r y b r e a t h . . . And I was s c a r e d . L i k e what b o t h e r e d me i s I t h o u g h t t h a t , t h a t l i k e , h i s l u n g s w o u l d be damaged o r s o m e t h i n g . These two f a m i l i e s had q u i t e d i f f e r e n t e x p e r i e n c e s i n t h e w a i t i n g p e r i o d j u s t p r i o r t o t h e s u r g e r y . M: We t o o k h i m i n and he had t h e c a t h e t e r i z a t i o n , ... and t h e n t h e y s a i d , "we've g o t an o p e n i n g on T u e s d a y i n s u r g e r y " . . . so t h e y d i d i t r i g h t away. So t h a t was r e a l l y g o o d , I t h o u g h t , b e c a u s e i t d i d n ' t g i v e us a c h a n c e t o r e a l l y t h i n k a b o u t t h e s u r g e r y c o m i n g u p — i t was j u s t g o i n g t o happen t h e n e x t d a y . I : D i d you a n t i c i p a t e a t a l l when he went i n f o r t h e h e a r t c a t h e t e r i z a t i o n ? M: Y e s , we had t a l k e d a b o u t I t . We f e l t j u s t f r o m what we had s e e n o f h i s c o n d i t i o n t h a t , t h a t he was g o i n g t o have i t d o n e . So, i t was r e a l l y n o t much o f a s u r p r i s e . You know, t h e d o c t o r s h a v e been v e r y good e x p l a i n i n g t o u s , um what h i s — y o u know, what h i s h e a r t r a t e i s , a n d , and h i s r e s p i r a t i o n — s o we knew i t was c l i m b i n g up. So i t was g e t t i n g t o t h e p o i n t t h a t he was b r e a t h i n g r e a l l y f a s t and even we c o u l d see i t and n o t b e i n g 69 t r a i n e d — b u t we c o u l d see i t a l o t . M: W e l l , t h e y t o l d us t h a t she had t o be j u s t t o t a l l y h e a l t h y b e f o r e she went i n . She had a r a s h u n d e r h e r a r m — h e r r i g h t arm and t h a t ' s t h e s i d e t h e y were g o i n g t o o p e r a t e o n . So we t o o k h e r t o t h e p e d i a t r i c i a n and he t h o u g h t t h e r a s h was a c t u a l l y w o r s e t h a n i t w a s — l i k e , I d o n ' t t h i n k i t was r e a l l y t h a t bad b u t he d i d n ' t want t o t a k e any c h a n c e s so he phoned and s a i d i t was p o s t p o n e d and he g a v e h e r some a n t i b i o t i c s and i t c l e a r e d p r e t t y w e l l r i g h t away. So we were k i n d o f d i s a p p o i n t e d , i n a way, b e c a u s e we w a n t e d t o g e t i t o v e r w i t h . I t was a n o t h e r week o f w o r r y i n g a b o u t i t b u t um, i t w a s n ' t t o o bad i n t h e l o n g r u n . These a c c o u n t s i l l u s t r a t e how i m p o r t a n t i t was t o t h e p a r e n t s t h a t t h e y n o t have t o w a i t once s u r g e r y was a n t i c i p a t e d . F o r t h e f i r s t f a m i l y , s u r g e r y was a n t i c i p a t e d b e c a u s e o f t h e u n d e r s t a n d i n g t h e s e p a r e n t s had a b o u t t h e i m p l i c a t i o n s o f t h e i r c h i l d ' s symptoms. The s e c o n d f a m i l y had been g i v e n a d a t e f o r s u r g e r y , w h i c h t h e n had t o be p o s t p o n e d . T h i s t h e n , l e d t o f e e l i n g s o f d i s a p p o i n t m e n t and p r o l o n g e d w o r r y . A l l o f t h e c h i l d r e n who u n d e r w e n t p a l l i a t i v e s u r g e r y were r e q u i r e d t o spend some t i m e i n t h e ICU. The p a r e n t s d e s c r i b e d t h e i r v i v i d r e c o l l e c t i o n s o f t h a t t i m e . F: I t um, t h e f i r s t day she had a l l t h e s e t u b e s and t h i n g s s t i c k i n g o u t . . M: I t was t e r r i b l e . F: So i t was, y o u know, k i n d o f d e p r e s s i n g t h e f i r s t d a y . But she p r o g r e s s e d so f a s t t h a t I t h i n k a t t h e end o f t h e f i r s t day she had some o f t h e t h i n g s o f f h e r . M: Yeah w e l l , y o u w o r k e d t h a t n i g h t . We went t o see h e r i n t h e a f t e r n o o n a f t e r s u r g e r y and she had a t u b e i n h e r nose and i n h e r s i d e and she was u n d e r o x y g e n . . . I p i c k e d h e r up t h a t n i g h t , y e a h . She 70 had t h e t h i n g out o f h e r nose but she s t i l l had t h e t u b e i n h e r s i d e . I t was p r e t t y s a d . I went h o m e — I d r o v e home t h a t n i g h t by m y s e l f and I j u s t — I j u s t b r o k e down on t h e way home. I t was t e r r i b l e and t h e n e x t day I went i n and a l l t h e t u b e s were o u t . Was t h a t when t h e y moved h e r o u t - - t h e y moved h e r o u t o f I n t e n s i v e C a r e t h e n e x t day . F: The v e r y n e x t d a y . M: They w h e e l e d h e r u p s t a i r s and she was s m i l i n g and I f e l t a l o t b e t t e r t h a t day and t h e n i t g o t b e t t e r . But t h e f i r s t d a y - - I w o u l d n ' t want t o go t h r o u g h t h a t a g a i n . I : Y e a h . Were t h e t u b e s what you e x p e c t e d o r was i t j u s t t h e f a c t t h a t t h e y were on h e r ? M: Y e a h , she was k i n d o f b l o o d y . She s t i l l had t h e b l o o d a l l o v e r h e r s i d e and you know, t h e t u b e i n h e r n o s e , t h a t w a s n ' t t o o b a d . They r e a l l y d i d n ' t wash h e r up t o o much b u t I gave h e r a b a t h . T h a t n i g h t I washed h e r down. But i t j u s t w a s n ' t v e r y p l e a s a n t t o see t h i s l i t t l e b a b y . And y o u know when she c r i e d you c o u l d t e l l she was i n a b i t o f p a i n . . . F o r t h i s f a m i l y , t h e t u b e s , t h e b l o o d y i n c i s i o n and t h e c h i l d ' s p a i n were t h e m a i n c o n c e r n s . P a i n management was an i s s u e f o r most o f t h e p a r e n t s . M: Most o f t h e d a y s I was o k a y b u t I remember one day we went i n t h e r e and t h e y s a i d t h a t he w a s n ' t t a k i n g v e r y w e l l t o t h e s e d a t i v e s o r w h a t e v e r t h e y were g i v i n g h i m . And um, t h e y s a i d t h a t he was t r y i n g t o f i g h t i t and he s t i l l had t h e r e s p i r a t o r i n and i t was t h e f i r s t t i m e s i n c e t h e o p e r a t i o n t h a t he'd opened h i s e y e s b u t h i s e y e s were c o m p l e t e l y g l a z e d o v e r and he c o u l d n ' t make any s o u n d s b e c a u s e o f t h e r e s p i r a t o r . And he j u s t k i n d o f l o o k e d up and I j u s t s t a r t e d c r y i n g and I had t o l e a v e . I t was j u s t l i k e , i t was s u c h a h e l p l e s s l o o k , l i k e what a r e t h e y d o i n g t o me--p l e a s e h e l p me. Two c o u p l e s e x p r e s s e d t h e i r s u r p r i s e a t t h e s i z e o f t h e t h o r a c o t o m y i n c i s i o n . M: ... we were s u r p r i s e d on how b i g i t was, b u t we t h o u g h t i t was gonna b e . . W e l l , when t h e d o c t o r s 71 o r anyone was t a l k i n g a b o u t i t , t h e y s a y , " o h , we're j u s t gonna go i n h e r e " and t h e y j u s t k i n d a show i t h e r e . And when we went i n t h e day he was o p e r a t e d o n , and you know, i t was t h i s b i g c u t on s u c h a l i t t l e body and we b o t h k i n d a j u s t l o o k e d and "oh my God!" M: I t d o e s n ' t l o o k g r e a t . I mean i t goes f r o m u n d e r n e a t h h e r arm t o p a r t w a y a r o u n d h e r b a c k . I t ' s a l i t t l e b i g g e r t h a n what we t h o u g h t i t was g o i n g t o b e . Y e a h , he s a i d i t was o n l y g o i n g t o be a c o u p l e o f i n c h e s . F: Y e a h , we e x p e c t e d t h i s (showed l e n g t h w i t h h a n d s ) f r o m t a l k i n g t o h i m . I t t u r n e d o u t t o be a b o u t t h r e e t i m e s t h a t s i z e . V i e w i n g t h e i r c h i l d r e n i n t h e ICU t h e n was one o f t h e l o w e s t p o i n t s o f t h e w h o l e e x p e r i e n c e f o r t h e s e p a r e n t s . They f e l t sad and h e l p l e s s s e e i n g t h e i r c h i l d r e n i n s u c h a s t a t e . F o l l o w i n g s u r g e r y , t h e p a r e n t s w a t c h e d t h e c h i l d r e n t o d e t e r m i n e what c h a n g e s may h a v e r e s u l t e d f r o m t h e s u r g e r y . F: Her c o l o u r ' s a l o t b e t t e r now. M: We d i d n ' t n o t i c e i t f o r t h e f i r s t c o u p l e o f d a y s . We were e x p e c t i n g i t . F: I t t o o k a w h i l e . We e x p e c t e d , y o u know, t h e v e r y f i r s t day t o w a l k i n and see a c h a n g e b u t i t was s l o w , o v e r a c o u p l e o f w e e k s . . . M: She d o e s n ' t have t h e b l u e y t o n e t o h e r when she c r i e s a l o t . So I t h i n k i t ' s i m p r o v e d q u i t e a b i t b u t i t w a s n ' t s o m e t h i n g t h a t we w o u l d j u s t n o t i c e o v e r n i g h t . The c h i l d ' s b e h a v i o u r when f i r s t home p o s t - o p e r a t i v e l y c o u l d be u p s e t t i n g t o p a r e n t s . M: B u t when we g o t him home, l i k e t h e i n c i s i o n — l i k e , I mean he was c r y i n g so h a r d , and I t h o u g h t , l i k e , 'oh my God, h e ' s g o i n g t o r i p t h e i n c i s i o n o p e n . ' 'Cause he w o u l d j u s t c r y , l i k e , f o r t h r e e h o u r s s o l i d . And i t w a s n ' t so much t h e c r y i n g 72 t h a t b o t h e r e d m e — I j u s t t h o u g h t he was gonna h u r t h i m s e l f , and I ' d g e t a l l u p s e t and you know, i t was k i n d o f a h a r d t i m e . P a l l i a t i v e s u r g e r y was s i g n i f i c a n t f o r a number o f r e a s o n s . The c h i l d ' s c o n d i t i o n i m p r o v e d p o s t - o p e r a t i v e l y a l t h o u g h n o t as i m m e d i a t e l y o r as d r a m a t i c a l l y as p a r e n t s had h o p e d . T h e r e seemed to be a p e r i o d o f a d j u s t i n g t o c a r i n g f o r t h e c h i l d once a g a i n , as t h e r e was i n t h e n e o n a t a l p e r i o d - I t was a l s o a p p a r e n t t h a t e x p e r i e n c i n g t h i s h o s p i t a l i z a t i o n had an i m p a c t on how p a r e n t s v i e w e d t h e s u b s e q u e n t h o s p i t a l i z a t i o n o f t h e c h i l d f o r c o r r e c t i v e s u r g e r y . I n summary, t h e e x p e r i e n c e o f l i v i n g w i t h a c h i l d w i t h a c h r o n i c c o n d i t i o n , a l t h o u g h u n i q u e f o r e a c h f a m i l y , a l s o had common e l e m e n t s . L i f e s t y l e c h a n g e s were r e q u i r e d by a l l f a m i l i e s and t h o s e who had more s y m p t o m a t i c i n f a n t s had a more d i f f i c u l t t i m e . T h e r e were f r u s t r a t i o n s a s s o c i a t e d w i t h f e e d i n g t h e i n f a n t and h a v i n g t o answer q u e s t i o n s f r o m r e l a t i v e s , f r i e n d s and s t r a n g e r s . A l t h o u g h e v e r y h o s p i t a l i z a t i o n e v o k e d a c e r t a i n amount o f a n x i e t y , h e a r t c a t h e t e r i z a t i o n s were g e n e r a l l y v i e w e d i n a p o s i t i v e way b e c a u s e t h e y r e p r e s e n t e d t h e p o s s i b i l i t y o f d i m i n i s h e d u n c e r t a i n t y . B e c a u s e o f t h e l e n g t h o f t h e t r a n s i t i o n p e r i o d , most f a m i l i e s had t o u t i l i z e s t r a t e g i e s w h i c h h e l p e d them m a i n t a i n a somewhat o p t i m i s t i c o u t l o o k a b o u t t h e i r c h i l d ' s f u t u r e . To c o n s t a n t l y d w e l l on t h e i r c h i l d ' s h e a r t c o n d i t i o n w o u l d have s e v e r e l y c o m p r o m i s e d t h e i r a b i l i t y t o 73 s a t i s f y t h e i r f a m i l y ' s n e e d s . C o p i n g s t r a t e g i e s s u c h a s , " n o r m a l i z i n g , " " f o c u s i n g on t h e p r e s e n t , " " b e i n g h o p e f u l , " " t r u s t i n g h e a l t h c a r e p r o f e s s i o n a l s " and " s e e k i n g s u p p o r t " h e l p e d them t o m a i n t a i n an o p t i m i s t i c o u t l o o k . These s t r a t e g i e s w i l l be d i s c u s s e d i n d e t a i l i n t h e l a s t m a j o r s e c t i o n o f t h i s c h a p t e r . W a i t i n g f o r C o r r e c t i v e H e a r t S u r g e r y The f a m i l i e s knew f r o m t h e t i m e o f t h e i r c h i l d ' s b i r t h t h a t c o r r e c t i v e h e a r t s u r g e r y w o u l d be r e q u i r e d . Thus i t was an e x p e c t e d e v e n t , t h e e v e n t w h i c h w o u l d end t h e t r a n s i t i o n p e r i o d u n d e r s t u d y h e r e . The c o r r e c t i v e s u r g e r y was s o m e t h i n g t h a t a l l o f t h e f a m i l i e s t h o u g h t a b o u t i n t e r m i t t e n t l y t h r o u g h o u t t h e t r a n s i t i o n p e r i o d . However, t h e amount o f e n e r g y e x p e n d e d i n t h i n k i n g a b o u t t h i s e v e n t and p r e p a r i n g f o r i t d e p ended p a r t l y on t h e c h i l d ' s c o n d i t i o n and p r i m a r i l y on how s o o n t h e s u r g e r y was a n t i c i p a t e d . U n c e r t a i n t y . The f a m i l i e s were g i v e n some i d e a a b o u t t h e t i m i n g o f t h e c o r r e c t i v e s u r g e r y when t h e c h i l d r e n were b o r n . These were m e r e l y e d u c a t e d g u e s s e s , s u b j e c t t o c h a n g e and d e p e n d e n t on t h e c o n d i t i o n o f t h e i n f a n t and f u r t h e r i n f o r m a t i o n o b t a i n e d on h e a r t c a t h e t e r i z a t i o n . M: You know, t h e y s a i d two y e a r s when he was f i r s t b o r n , t h e n t h e y s a i d a y e a r , so i t c o u l d be a n y t i m e . L i k e , we j u s t d o n ' t know. M: W e l l , h e ' s h o p i n g she won't have t o have i t done u n t i l s c h o o l - a g e b u t he s a i d i t c o u l d be when s h e ' s two o r t h r e e . I t ' s a l l g o i n g t o depend on 7 4 how s h e g o e s - I d o n ' t e v e n k n o w — w h a t d o e s i t d e t e r m i n e — l i k e , w h a t d o e s i t d e p e n d on? F : W e l l , I g u e s s s h e ' s g o i n g t o o u t g r o w t h e s h u n t t h a t ' s p u t i n . T h i s u n c e r t a i n t y a b o u t t h e t i m i n g o f t h e s u r g e r y made i t d i f f i c u l t f o r f a m i l i e s t o do much p l a n n i n g f o r t h e f u t u r e . M o s t o f t h e f a m i l i e s w e r e a m b i v a l e n t a b o u t t h e t i m i n g o f t h e c o r r e c t i v e h e a r t s u r g e r y . M: I s t i l l t h i n k i n some ways y o u ' d l i k e t o s a y , " j u s t do i t and g e t i t o v e r w i t h " b u t i n some ways y o u ' d j u s t r a t h e r , j u s t w a i t and p u t i t o f f and p u t i t o f f . B u t , y o u k n o w , t h e y s a i d , " a s l o n g as h e ' s d o i n g w e l l t h e n t h e y ' l l j u s t l e a v e h i m " w h i c h I c a n u n d e r s t a n d . F : I ' m h o p i n g f o r t h e s u r g e r y a s q u i c k l y a s p o s s i b l e . L i k e I s a i d , i t ' s g o n n a be h a r d t o f i n a l l y t a k e h i m i n f o r i t . M: I know i t ' s g o i n g t o g e t h a r d e r t o s e e h i m i n t h e h o s p i t a l a g a i n b e c a u s e w e ' v e had h i m home n o w . And now h e ' s g e t t i n g s t r o n g e r and s t r o n g e r and i t ' s g o i n g t o be more d i f f i c u l t when he d o e s go t h r o u g h t h e h e a r t s u r g e r y . I ' d j u s t l i k e t o s e e t h e t h i n g o v e r w i t h . T h e s e f a m i l i e s a l l w a n t e d t o g e t t h e s u r g e r y " o v e r w i t h " so t h e y c o u l d s t o p w o r r y i n g a b o u t i t , b u t a t t h e same t i m e t h e y w e r e a f r a i d t o t a k e t h e i r c h i l d r e n i n . S e v e r a l f a m i l i e s t a l k e d a b o u t h o p i n g t h e s u r g e r y w o u l d be d o n e b e f o r e t h e c h i l d was o l d e n o u g h t o r e a l l y u n d e r s t a n d o r remember t h e e v e n t . F : I a l w a y s j u s t hope t h a t t h e y ' l l do i t b e f o r e he g e t s t o t h e s t a g e w h e r e y o u h a v e t o e x p l a i n i t t o h i m , w h a t h e ' s g o i n g t o go t h r o u g h . I mean y o u c a n j u s t p u t h i m i n and t h e y do i t and y o u d o n ' t h a v e t o t e l l h i m a n y t h i n g . . . . 75 I : Can you t e l l me a b i t more a b o u t t h a t . F: The o l d e r he g e t s , t h e more he u n d e r s t a n d s , t h e more you h a v e t o p r e p a r e him f o r i t . "We're g o i n g t o t h i s p l a c e and t h e y ' r e g o i n g t o do so and so w i t h you and when you wake up." T h a t , I d o n ' t r e a l l y want t o do t h a t . I t ' s more, I g u e s s e a s y on me, I g u e s s — t h e w h o l e l i n g u i s t i c t h i n g p r o b a b l y - - b u t I d o n ' t r e a l l y want t o do t h a t . . . The t h i n g i s w i t h s m a l l k i d s l i k e t h a t , i f you h a v e t o e x p l a i n t h i n g s i t ' s so e a s y t o s a y t h i n g s wrong . I : So y o u ' r e a f r a i d you m i g h t make i t w o r s e f o r h i m . F: Y e s , y u p . I t ' s d i f f i c u l t f o r us t o t h i n k t h e way t h e i r m ind i s . I g u e s s t h a t ' s what I'm t r y i n g t o s a y . M: You h ave t o s i m p l i f y i t b u t i t ' s d a n g e r o u s when you do b e c a u s e you m i g h t g e t i t a l l w r o n g , r e a l l y - - i t ' s t o o s i m p l e . F: I t ' s , i t ' s a l i t t l e ways o f f b u t we're k i n d o f g l a d t h a t t h e s u r g e r y w i l l be done o r f r o m what we u n d e r s t a n d anyway, done b e f o r e he g e t s i n t o s c h o o l - a g e and s t a r t s i n t o t h a t . . . M: I t h i n k when t h e y ' r e o l d e r t o o , t h e y p r o b a b l y remember and I ' d r a t h e r him n o t . I mean he's g o i n g t o have t h e s c a r and we c a n e x p l a i n t h a t t o him when he's o l d e r b u t I ' d r a t h e r have him n o t remember t h e s u r g e r y . Not o n l y was t h e t i m i n g o f t h e s u r g e r y u n c e r t a i n , b u t f o r two o f t h e f a m i l i e s t h e r e was u n c e r t a i n t y a b o u t where t h e s u r g e r y w o u l d be d o n e . F: I t h i n k t h e o n l y t h i n g we're s i t t i n ' a r o u n d h e r e now w a i t i n g f o r i s h i s n e x t o p e r a t i o n . And t h e r e i s o f c o u r s e t h e t a l k t h a t he may go t o T o r o n t o f o r t h e n e x t o p e r a t i o n o r he may h a v e i t o u t h e r e . . . . One t h i n g we've g o t t h a t ' s l u c k y f o r us i s t h a t my p a r e n t s l i v e i n T o r o n t o . So, as f a r as s t a y i n g somewhere and u h , y o u know, t h a t s o r t o f t h i n g — t h a t end of t h i n g s i s good f o r u s . Um, i f t h a t ' s where he has t o go and t h a t ' s where t h e p e o p l e a r e g o i n g t o do t h e b e s t j o b f o r h i m , f i n e . T h a t d o e s n ' t b o t h e r me a t a l l . 76 M: He s t i l l s a i d t h a t she may have t o go t o T o r o n t o f o r h e r s . I : How do you f e e l a b o u t t h a t ? M: He s a i d he w o u l d l o o k a t i t and i f he f e l t t h a t i t was i n h e r b e s t i n t e r e s t t o go t o T o r o n t o t h e n t h a t ' s where s h e ' d g o . But i f he f e l t c o m f o r t a b l e w i t h t h e p e o p l e h e r e d o i n g t h e o p e r a t i o n t h e n s h e ' d have i t done h e r e . . . . F: I t w o u l d n ' t make any d i f f e r e n c e — j u s t a s l i g h t i n c o n v e n i e n c e . T h i s p a r t i c u l a r f a c e t o f u n c e r t a i n t y , a b o u t where t h e s u r g e r y w o u l d be d o n e , d i d n o t seem t o be a m a j o r c o n c e r n f o r t h e s e f a m i l i e s . U n c e r t a i n t y a b o u t t h e t i m i n g was more o f a c o n c e r n . I m p a c t o f p r e v i o u s e x p e r i e n c e . In t h i n k i n g a b o u t t h e c o r r e c t i v e h e a r t s u r g e r y , p a r e n t s who had e x p e r i e n c e d t h e ICU e n v i r o n m e n t when t h e i r c h i l d had p a l l i a t i v e s u r g e r y r e f l e c t e d on what t h a t was l i k e f o r them. T h i s was one t a c t i c f o r p r e p a r i n g t h e m s e l v e s f o r what l a y a h e a d . F: You know we saw a young guy come o u t o f open h e a r t s u r g e r y w h i l e he was i n t h e r e so we k i n d o f know wha t t o e x p e c t . M: A l l t h e t u b e s a g a i n . F: You know i f you d i d n ' t — t h o s e guys w o u l d p r o b a b l y be w i s e t o t e l l somebody w h a t ' s a c t u a l l y g o i n g t o h a p p e n — s h o w them p i c t u r e s b e c a u s e i t c o u l d be a m a j o r s h o c k . M: ... We've s e e n him w i t h t u b e s c o m i n g out o f e v e r y p a r t o f h i s b o d y . We s o r t o f know what t o e x p e c t . F o r somebody who d o e s n ' t know and you w a l k i n t h e r e when t h e y ' r e a l l o w e d a f t e r t h e s u r g e r y t o see a l l t h a t . I t ' s bad enough s e e i n g t h e i n c i s i o n , n e v e r mind a l l t h e t u b e s and s e e i n g t h e c h i l d j u s t l y i n g t h e r e , l i k e — w e l l , j u s t l y i n g 77 t h e r e . B e c a u s e t h e l i t t l e f e l l o w n e x t t o h i m — t h e y g ave him c u r a r e and I d i d n ' t r e a l i z e , b u t I g u e s s t h e y have t o g i v e them s o m e t h i n g t o keep them f r o m m o v i n g . T h a t ' s a n o t h e r t h i n g , t o o — t h a t , y o u know, s e e i n g t h a t and o v e r h e a r i n g them t a l k i n g - - y o u know t h a t he's g o i n g t o be more o r l e s s — I g u e s s t h e y p a r a l y z e them so t h a t t h e y d o n ' t t o s s and t u r n so much.... T h a t ICU's a r e a l s c a r y p l a c e w i t h a l l t h o s e b e e p e r s g o i n g o f f and e v e r y b o d y and you d o n ' t know i f i t ' s y o u r s , y o u know, t h a t ' s b e e p i n g - - i f i t ' s t h e I.V. t h a t ' s o c c l u d e d o r somebody e l s e ' s o r i f i t ' s what ! . . . T h a t p l a c e , i t r e a l l y i s s c a r y and o f c o u r s e y o u c a n ' t h e l p b u t n o t i c e w h a t ' s g o i n g on a r o u n d you and t h e r e a r e so many o t h e r c a s e s a n d , y o u know, I mean i t ' s a l i f e and d e a t h s i t u a t i o n down t h e r e . From t h i s a c c o u n t , i t a p p e a r s t h a t t h e i n c i s i o n , t h e t u b e s , t h e i m m o b i l i t y o f t h e c h i l d and t h e s t r a i n o f o t h e r f a m i l i e s were t h e m a j o r s o u r c e s o f s t r e s s i n t h e ICU. The ICU e x p e r i e n c e w i l l be d i s c u s s e d f u r t h e r u n d e r t h e c o p i n g s t r a t e g y o f " a n t i c i p a t i n g t h e f u t u r e . " The o u t l o o k o f t h o s e f a m i l i e s whose c h i l d r e n had n o t had p a l l i a t i v e s u r g e r y was d i f f e r e n t . They seemed t o be more o p t i m i s t i c . T h i s o p t i m i s m p e r h a p s a r o s e o u t o f i g n o r a n c e and a r e s u l t i n g a b i l i t y t o m i n i m i z e t h e s i t u a t i o n . F: I'm n o t r e a l l y w o r r i e d a b o u t i t . Um, any s u r g e r y i s s e r i o u s b u t f r o m what t h e y ' v e t o l d me and f r o m what I've h e a r d i t ' s — i t ' s n o t s o m e t h i n g t h a t ' s r e a l l y , r e a l l y new. They know what t h e y have t o d o . Um, I d o n ' t a n t i c i p a t e a p r o b l e m . I'm n o t g o i n g t o l e t i t b o t h e r me, p u t i t t h a t way. At t h e c o n c l u s i o n o f t h i s i n t e r v i e w t h e s e p a r e n t s a s k e d t h e i n v e s t i g a t o r how l o n g t h e i r i n f a n t w o u l d be i n t h e h o s p i t a l p o s t - o p e r a t i v e l y . They had been t o l d a b o u t f i v e d a y s , by t h e i r f a m i l y p r a c t i t i o n e r . T h e i r s u r p r i s e was o b v i o u s when t h e y were t o l d i t w o u l d p r o b a b l y be a t l e a s t t e n days t o 78 two w e e k s . They were n o t aware t h a t she w o u l d be i n t h e ICU, have m u l t i p l e t u b e s and p r o b a b l y v e n t i l a t o r a s s i s t a n c e i n i t i a l l y . A n o t h e r c o u p l e were i n i t i a l l y e x t r e m e l y o p t i m i s t i c a b o u t t h e c a r d i a c s u r g e r y . M: A w a i t i n g t h e s u r g e r y i s n ' t v e r y i n t e n s e . F: W a i t i n g f o r i t — w h e t h e r i t j u s t h a s n ' t h i t us y e t o r r e a l i t y . I mean i t ' s n o t an uncommon t h i n g . They do do i t s u c c e s s f u l l y . M: We're n o t w o r r i e d a b o u t l o s i n g him on t h e t a b l e . F: T h e r e ' s a 10% r i s k . They t o l d us t h e r e i s a r i s k b u t t h e odds a r e i n o u r f a v o r , s o — i f t h e y s a i d i t was 50/50, o r . . I : I t w o u l d be d i f f e r e n t . M: Y e a h . F: The r i s k s a r e t h a t h i g h w i t h any o p e r a t i o n . At t h e t i m e o f t h e s e c o n d i n t e r v i e w , two months l a t e r , t h e y were o b v i o u s l y more c o n c e r n e d a b o u t t h e s u r g e r y . A h e a r t c a t h e t e r i z a t i o n was t o be done f o u r d a y s a f t e r t h a t i n t e r v i e w . At t h a t t i m e a d e c i s i o n w o u l d be made a b o u t t h e t i m i n g o f t h e s u r g e r y . T h i s f a c t , c o u p l e d w i t h an e n h a n c e d u n d e r s t a n d i n g o f t h e p o s s i b l e i m p l i c a t i o n s o f s u r g e r y had h e i g h t e n e d t h e i r a n x i e t y . M: I t ' s s c a r y r i g h t now, I t e l l y o u . I : Do you f e e l d i f f e r e n t t h a n maybe t h e l a s t t i m e I t a l k e d t o y o u , do you t h i n k ? M: P r o b a b l y , I know a l i t t l e more now and l i k e you know, I c a n f i n d m y s e l f d o i n g t h e d i s h e s and t h e n e x t , I b r e a k i n t o t e a r s . You know, i t ' s s c a r y . ... I t ' s a t o u c h y s i t u a t i o n f o r a n y b o d y , yo u know, i t ' s h a r d n o t t o g e t r e a l l y e m o t i o n a l . 79 C o n t e m p l a t i n g r i s k s . Most o f t h e f a m i l i e s t a l k e d about t h e r i s k s i n v o l v e d i n h e a r t s u r g e r y . A l t h o u g h t h e y f o u n d i t d i f f i c u l t to d i s c u s s , t h e y d i d v o i c e t h e i r f e a r s about the u l t i m a t e r i s k - - d e a t h . M: T h e r e ' s a l w a y s t h a t t h o u g h t — l i k e I know when he was young, our f a m i l y d o c t o r s a i d t h a t t h e r e was a ch a n c e t h a t — I mean t h e r e ' s a l w a y s a cha n c e w i t h any s u r g e r y and e s p e c i a l l y w i t h h e a r t s u r g e r y — s o , t h e t h o u g h t o f t h a t t o o . Of c o u r s e t h a t ' s g o i n g to b o t h e r y o u — w h a t happens i f he d i d n ' t make i t and e s p e c i a l l y a f t e r — i t ' s bad enough i f s o m e t h i n g happened r i g h t when t h e y ' r e b o r n but a f t e r you've l i v e d w i t h them f o r a y e a r or two y e a r s and t h e n s o m e t h i n g was to happen. I t ' s r e a l l y h a r d but i t ' s s o m e t h i n g you've g o t to t r y n o t to t h i n k a b o u t . T h e r e ' s no p o i n t i n w o r r y i n g y o u r s e l f . F: Yeah. I: I t ' s c e r t a i n l y s o m e t h i n g t h a t c r e e p s i n t o your t h o u g h t s , I'm s u r e . F: You know, i t ' s n o t the f a u l t o f the d o c t o r to m e n t i o n i t . I t ' s c e r t a i n l y a r e a l i t y and i t ' s s o m e t h i n g t h a t you have to know. When the c h i l d had few o v e r t symptoms o f t h e d i s e a s e , p a r e n t s sometimes f o u n d i t h a r d to come to terms w i t h the n e c e s s i t y o f s u r g e r y . M: You a l w a y s t h i n k about 'what i f the s u r g e r y d o e s n ' t work out and i n the w o r s t c a s e i f he d o e s n ' t s u r v i v e i t ' . You know, i f you w i l l blame y o u r s e l f a f t e r , t h a t you went t h r o u g h w i t h the s u r g e r y a t a l l . But t h e n o f c o u r s e we've b o t h g o t to the c o n c l u s i o n t h a t o f c o u r s e w e ' l l go t h r o u g h w i t h the s u r g e r y b e c a u s e when he g e t s up to the age where i t ' s r e a l l y g o i n g to b o t h e r him and he d i e s a t t h i r t y , y o u ' r e r e a l l y g o i n g to blame y o u r s e l f b e c a u s e you d i d n ' t l e t him t a k e the s u r g e r y . I: R i g h t . Do you t h i n k b e c a u s e he h a s n ' t had a l o t o f p r o b l e m s t h a t t h a t makes i t even more d i f f i c u l t ? 80 M: Y e s , I t h i n k s o . B e c a u s e i t ' s n o t t h a t o b v i o u s t h a t he n e e d s t h e s u r g e r y . B e s i d e s t h e n o r m a l r i s k s w i t h any h e a r t s u r g e r y , one f a m i l y had an e x t r a c o n c e r n . F: So, a p p a r e n t l y h e ' l l be t h e y o u n g e s t t h a t t h e y ' r e g onna do i t on y e t , y o u know. I : A t [ t e r t i a r y h o s p i t a l ] ? F : Ya . I : How do y o u f e e l a b o u t t h a t ? F: Um w e l l , t h e y ' r e g e t t i n g b e t t e r and b e t t e r r e s u l t s t h e y o u n g e r and y o u n g e r t h e y do them so I f e e l p r e t t y good a b o u t t h a t b u t I s o r t a w i s h e d he was --he h a d n ' t been t h e y o u n g e s t . . . A n t i c i p a t i n g s u r g e r y . The c o r r e c t i v e s u r g e r y became more o f a r e a l i t y f o r f a m i l i e s as t h e d a t e drew n e a r e r and t h e y t h e r e f o r e s p e n t more t i m e t h i n k i n g a b o u t i t . M: Oh, I w o r r y a b o u t i t . As i t g e t s c l o s e r , I w o r r y a l i t t l e more. Some p a r e n t s a l s o had p h y s i c a l symptoms o f t h e u n c e r t a i n t y and f e a r t h e y were e x p e r i e n c i n g . F: W e l l , I t h i n k now t h a t we've g o t t e n an O.R. d a t e . . I : You do have o n e — w h e n i s t h a t ? F: 2 7 t h — I ' v e s o r t o f n o t been s l e e p i n g t h a t w e l l , y o u know, and t h i n g s l i k e t h a t . I : Y o u ' r e t h i n k i n g more a b o u t i t now, a r e you? F: Oh y e a h ! R a t h e r t h a n b e i n g o p t i m i s t i c a b o u t w h a t ' s g o i n g t o happen I'm j u s t s o r t o f h o l d i n g b a c k s a y i n g , " w e l l , I'm n o t g o i n g t o be t o o o p t i m i s t i c b e c a u s e what i f s o m e t h i n g d o e s , g oes wrong and a h , h e ' s n o t c o r r e c t e d 100% and he's g o t t a go b a c k o r you know, s o m e t h i n g e l s e has g o t t a be done." I f i n d t h a t c r e e p i n g i n t o my t h o u g h t s . 81 I : B e c a u s e you h a v e a d e f i n i t e d a t e , y o u t h i n k i t ' s made a d i f f e r e n c e . F: Y e a h , now i t ' s s o r t o f a h , no l o n g e r — i t ' s n o t i n t h e f u t u r e , t h e i n d e f i n i t e f u t u r e . I t ' s c o m i n g up . I : I t ' s more o f a r e a l i t y . F: You know, i t ' s g o i n g t o be i n 20 days o r 21 d a y s . I t ' s a h , I f i n d I ' v e been h a v i n g a l o t o f t r o u b l e s l e e p i n g . . . I : How a r e you f e e l i n g now t h a t you k n o w — n o w t h a t you h a v e a d a t e ? I s i t any d i f f e r e n t f o r you? ( t o m o t h e r ) M: A l i t t l e b i t s c a r i e r now t h a t I know t h a t he w i l l be g o i n g i n . I h a v e n ' t been s l e e p i n g a l l t h a t g o o d . I ' v e been h a v i n g a l o t o f d r e a m s — n o t so much a b o u t him b u t j u s t a b o u t o t h e r p e o p l e i n my f a m i l y and t h a t — i n u n p l e a s a n t s i t u a t i o n s and s t u f f l i k e t h a t . The c o p i n g s t r a t e g y o f " b e i n g h o p e f u l " u s u a l l y h e l p e d p a r e n t s m a i n t a i n an o p t i m i s t i c o u t l o o k . However, i n t h i s s i t u a t i o n b e i n g t o o h o p e f u l w o u l d n o t have a l l o w e d t h e p a r e n t s t o p r e p a r e t h e m s e l v e s i n c a s e s o m e t h i n g went w r o n g . E x p l a i n i n g t o o t h e r s . Once a g a i n , e x p l a i n i n g t o s i b l i n g s and o t h e r r e l a t i v e s was s o m e t h i n g w h i c h t h e p a r e n t s had t o d e a l w i t h . One t h r e e y e a r o l d g r e e t e d t h e i n v e s t i g a t o r a t t h e d o o r w i t h t h e q u e s t i o n , " a r e you h e r e t o f i x my b a b y ? " When a s k e d , " f i x h e r how?" she r e p l i e d , " c u t h e r open and f i x h e r h e a r t . " T h i s q u e s t i o n was r e p e a t e d s e v e r a l more t i m e s t h r o u g h t h e c o u r s e o f t h e i n t e r v i e w . One c o u l d assume t h a t t h i s c h i l d a l s o q u e s t i o n e d h e r p a r e n t s a b o u t t h e u p c o m i n g e v e n t on more t h a n one o c c a s i o n . T h i s i s what one p a r e n t had t o s a y a b o u t a young s i b l i n g . 82 M: I n a way, I t h i n k i t ' s g o i n g t o be w o r s e t o d e a l w i t h h i s s i s t e r - - h o w a r e we g o i n g t o t e l l h e r — b e c a u s e she c e r t a i n l y u n d e r s t a n d s so much now. I : How o l d i s she now? M: A l m o s t f i v e . . . . I t ' s when y o u h a v e t o go i n t o d e t a i l s and t h e n t h e y r e a l l y s t a r t t o a s k a l o t , t h a t ' s when I t h i n k i t ' s g o i n g t o be h a r d . And t h a t ' s what I t h i n k s h e ' s p r o b a b l y g o i n g t o do. Some o f t h e g r a n d p a r e n t s q u e s t i o n e d t h e n e c e s s i t y o f s u r g e r y . F: My m o t h e r i s a s k i n g , " i s i t r e a l l y n e c e s s a r y f o r him t o have t h e s u r g e r y b e c a u s e he l o o k s so g o o d ? " I : What do you s a y ? F: I t r y t o e x p l a i n , o n c e a g a i n , w h a t ' s r e a l l y wrong w i t h h i m , y o u know, and why he n e e d s i t . You know, t h a t he won't c o n t i n u e t o l o o k t h i s good once he s t a r t s t o r e a l l y g r o w... When r e l a t i v e s q u e s t i o n e d t h e n e c e s s i t y o f s u r g e r y , p a r e n t s were f o r c e d t o put on a c o n f i d e n t f r o n t when t h e y were f e e l i n g l e s s t h a n c e r t a i n t h e m s e l v e s a b o u t t h e n e c e s s i t y f o r a n d / o r outcome o f s u r g e r y . I n a t t e m p t i n g t o d e c r e a s e t h e amount o f u n c e r t a i n t y s u r r o u n d i n g t h e s u r g i c a l e x p e r i e n c e , t h e p a r e n t s u s e d t h e c o p i n g s t r a t e g y o f " a n t i c i p a t i n g t h e f u t u r e " w h i c h i n c l u d e d t h e t a c t i c s o f r e f l e c t i n g on p r e v i o u s e x p e r i e n c e and s e e k i n g i n f o r m a t i o n . At t h e same t i m e , t h e y t r i e d t o m a i n t a i n a somewhat p o s i t i v e o u t l o o k by " t r u s t i n g h e a l t h c a r e p r o f e s s i o n a l s , " " s e e k i n g s u p p o r t , " and " b e i n g h o p e f u l . " A l l o f t h e s e s t r a t e g i e s w i l l be e x p l o r e d i n t h e n e x t s e c t i o n o f t h i s c h a p t e r . 83 C o p i n g S t r a t e g i e s I m p l i c i t i n t h e p a r e n t s ' a c c o u n t s were a s e t o f g o a l s r e l a t e d t o t h e i d e n t i f i e d t r a n s i t i o n p e r i o d . These w e r e : e n s u r i n g t h a t t h e i l l c h i l d was p r o p e r l y c a r e d f o r , k e e p i n g f a m i l y l i f e as n o r m a l as p o s s i b l e , r e d u c i n g u n c e r t a i n t y , m a i n t a i n i n g an o p t i m i s t i c o u t l o o k , and p r e p a r i n g f o r t h e f u t u r e . The p l a n s t h e p a r e n t s e m p l o y e d t o d e a l w i t h t h e i r d i f f i c u l t i e s and s t r i v e f o r t h e s e g o a l s h a v e been t e r m e d c o p i n g s t r a t e g i e s . W h i l e t h e s t r a t e g y i s t h e o v e r a l l p l a n , t h e word t a c t i c I m p l i e s a more p r e c i s e , s p e c i f i c d e v i c e f o r a c c o m p l i s h i n g t h a t p l a n . Seven c o p i n g s t r a t e g i e s were i d e n t i f i e d w h i c h a l l o f t h e p a r e n t s u s e d d u r i n g t h e i r e x p e r i e n c e . The s p e c i f i c t a c t i c s u t i l i z e d w i l l be d i s c u s s e d as e a c h s t r a t e g y i s d e s c r i b e d . T h i s d e l i n e a t i o n w i l l a l s o i n c l u d e i n f o r m a t i o n a b o u t when t h e s t r a t e g i e s were e m p l o y e d , when t h e y w o r k e d and when t h e y d i d n o t . T r u s t i n g H e a l t h C a r e P r o f e s s i o n a l s To t r u s t someone g e n e r a l l y means h a v i n g c o n f i d e n c e i n t h a t p e r s o n . T r u s t i n g t h o s e r e s p o n s i b l e f o r t h e i r c h i l d r e n s ' h e a l t h was a v e r y i m p o r t a n t c o p i n g s t r a t e g y f o r t h e s e p a r e n t s . I t e n a b l e d them t o f e e l r e a s s u r e d t h a t t h e i r i l l c h i l d was b e i n g p r o p e r l y c a r e d f o r by t h e h e a l t h c a r e p r o f e s s i o n a l s . They were t h e n a b l e t o m a i n t a i n a somewhat o p t i m i s t i c o u t l o o k . Most o f t h e p a r e n t s had l i t t l e p r e v i o u s p e r s o n a l e x p e r i e n c e w i t h h e a l t h c a r e p r o f e s s i o n a l s . None o f them 84 r e l a t e d any s t o r i e s o f n e g a t i v e e n c o u n t e r s w h i c h w o u l d have a f f e c t e d t h e i r a b i l i t y t o t r u s t . The p a r e n t s had an i n t e n s e need t o t r u s t t h e h e a l t h c a r e p r o f e s s i o n a l s and most o f them had no r e a s o n n o t t o , a t l e a s t when t h e i n f a n t was f i r s t b o r n . H a l f o f t h e p a r e n t s r e l a t e d a t l e a s t one n e g a t i v e i n c i d e n t w h i c h had o c c u r r e d a t t h e community h o s p i t a l s where t h e i n f a n t s were b o r n . However, t h e y seemed t o be a b l e t o p u t t h e s e e x p e r i e n c e s b e h i n d them when t h e i r i n f a n t s were t r a n s f e r r e d t o t h e t e r t i a r y c a r e h o s p i t a l . I n f a c t , t h e y e x p r e s s e d r e l i e f a t h a v i n g t h e i r c h i l d r e n a t t h e t e r t i a r y c a r e c e n t r e b e c a u s e t h e y had c o n f i d e n c e i n t h e h e a l t h c a r e p r o f e s s i o n a l s w o r k i n g t h e r e . T h i s e v a l u a t i o n may have been b a s e d on a c o n t r a s t w i t h t h e s o m e t i m e s n e g a t i v e e x p e r i e n c e s a t t h e c o m m u n i t y h o s p i t a l s a n d / o r a need t o t r u s t i n t h o s e u l t i m a t e l y r e s p o n s i b l e f o r t h e i r c h i l d ' s w e l f a r e . M: ... l i k e e v e r y o n e was so c o n f i d e n t , l i k e a t [ t e r t i a r y h o s p i t a l ] , i t was j u s t — a s s o o n as he was down t h e r e i t was l i k e he was g o i n g t o be a l l r i g h t b e c a u s e t h e y knew what t h e y were d o i n ' . And w h e t h e r i t was n u r s e s , d o c t o r s , w hoever o r you know, e v e n t h e d o c t o r s l i k e t h e i n t e r n s o r w h a t e v e r — t h e y were j u s t r e a l l y c o n f i d e n t a b o u t what t h e y were d o i n g , ' c a u s e I g u e s s t h e y had se e n i t a l o t more and i t was l i k e "we u n d e r s t a n d y o u r b a b y ' s s i c k b u t t h e r e ' s a l o t — h e c o u l d be worse - - h e ' s d o i n g r e a l l y w e l l . " So I t h i n k t h a t , t h a t r e a l l y h e l p e d . C o n f i d e n c e on t h e p a r t o f t h e h e a l t h c a r e p r o f e s s i o n a l s was an i m p o r t a n t q u a l i t y w h i c h e n a b l e d t h e p a r e n t s t o f e e l t h e y were w o r t h y o f t r u s t . 85 B e i n g w e l l - i n f o r m e d was i m p o r t a n t t o a l l o f t h e p a r e n t s . Most o f them f e l t t h a t t h e i r c h i l d ' s p h y s i c i a n s d i d a good j o b o f e x p l a i n i n g what was h a p p e n i n g , w h e t h e r i t was t h e c a r d i o l o g i s t , p e d i a t r i c i a n o r f a m i l y p r a c t i t i o n e r . F: B u t I t h i n k w h a t ' s made i t most c o m f o r t a b l e f o r us i s t h e e x p l a n a t i o n s t h a t we've been g i v e n f r o m t h e d o c t o r s a l o n g t h e way. I t ' s r e a l l y h e l p e d . I t h i n k i t ' s made us f e e l a l o t more c o m f o r t a b l e r a t h e r t h a n w o r r y i n g a b o u t i t c o n s t a n t l y . . . . M: The p e d i a t r i c i a n t h a t we d e a l w i t h t a l k s t o D r . B. q u i t e o f t e n and she phoned me a t home a f t e r an a p p o i n t m e n t w i t h h e r ... and D r . B.'s phoned us a t home so i t ' s r e a l l y been n i c e . I t ' s n o t l i k e w i t h some d o c t o r s — i t ' s k i n d o f c o l d and y o u j u s t f i n d o u t b a s i c t h i n g s and y o u go home. Where y o u know — e v e r y o n e r e a l l y w o r r i e s a b o u t what we go home and t h i n k a b o u t . The p a r e n t s were a b l e t o t r u s t t h o s e who made an e f f o r t t o keep them i n f o r m e d . T r u s t i n g t h e h e a l t h c a r e p r o f e s s i o n a l s was p a r t i c u l a r l y i m p o r t a n t when t h e c h i l d was h o s p i t a l i z e d and the p a r e n t s had t o r e l i n q u i s h most o f t h e i r c o n t r o l . M: ... I ' v e j u s t grown up t h a t y o u p u t t r u s t i n y o u r d o c t o r s and y o u r n u r s e s and t h a t ' s j u s t t h e way I f e e l , so I'm n o t g o i n g t o q u e s t i o n d i f f e r e n t t h i n g s . You know, i f one o f t h e n u r s e s maybe a s k e d me, " w e l l , what does he l i k e t o d o , t h i s o r t h a t , " f i n e , o k a y , I'm w i t h h i m a l l t h e t i m e . But you know, I'm n o t g o i n g t o t e l l h e r how she s h o u l d t a k e h i s t e m p e r a t u r e and t h a t , so t h a t made i t a l o t e a s i e r b e c a u s e I j u s t r e a l l y r e l a x e d and r e a l l y f e l t t h a t t h e y knew what t h e y were d o i n g and t h a t was i t . . . By t r u s t i n g t h e h e a l t h c a r e p r o f e s s i o n a l s t h i s m o t h e r was a b l e t o r e l a x when h e r c h i l d was i n t h e i r c a r e . When t h e f a m i l i e s were c o n t e m p l a t i n g s u r g e r y t h e y n e e ded to t r u s t t h e p h y s i c i a n s . F: Uh, I ' v e g o t a l o t o f c o n f i d e n c e i n t h e d o c t o r s 86 t h a t he has and uh , I d o n ' t know, we're n o t r e a l l y w o r r i e d a b o u t i t . I'm n o t w o r r i e d t h a t we're g o i n g t o l o s e him b e c a u s e I d o n ' t t h i n k f o r a m i n u t e t h a t we a r e . O t h e r p a r e n t s r e m a r k e d t h a t t h e y had no c h o i c e b u t t o t r u s t t h e s u r g e o n s a t t h e t e r t i a r y c a r e h o s p i t a l . M: We j u s t hope t h a t t h e y a l l know what t h e y ' r e d o i n g — t h e y ' r e t h e e x p e r t s . We d o n ' t know a l o t a b o u t i t . . . We s o r t o f l e a v e i t i n t h e i r hands and we k i n d of--maybe we j u s t h ave so much t r u s t , b e c a u s e we d o n ' t know enough t o q u e s t i o n what t h e y ' r e s a y i n g , what t h e y ' r e d o i n g . E v e r y o n e a l w a y s s a y s , " g e t a s e c o n d o p i n i o n " b u t w i t h t h i s t y p e o f t h i n g t h e r e a r e n ' t a l o t o f e x p e r t s a r o u n d so y o u c a n ' t . But um, o u r p e d i a t r i c i a n was t a l k i n g a b o u t t h e s u r g e o n s . A c t u a l l y , a n o t h e r f r i e n d o f o u r s , a d o c t o r , h e ' s c h e c k e d i n t o i t t o o . T h e y ' r e a l l f i n d i n g o u t a b o u t i t . S e e k i n g i n f o r m a t i o n a b o u t t h e h e a l t h c a r e p r o f e s s i o n a l s was one t a c t i c u s e d by p a r e n t s t o h e l p them d e c i d e i f a p r o f e s s i o n a l was w o r t h y o f t r u s t . F o r one c o u p l e , t r u s t was m i x e d w i t h a l i t t l e d o u b t . M: Even now, l i k e s o m e t i m e s I hope t h a t t h e y do t h e n e x t s u r g e r y when he's a y e a r j u s t t o g e t i t o v e r w i t h . W e l l , t h e y s a y t h a t t h e y w o u l d n e v e r l e a v e i t t h a t l o n g b u t you a l w a y s h e a r — t h e r e was a show f r o m t h e S t a t e s on T.V. t h a t s a y s t h a t t h i s d o c t o r d o es i t when t h e y ' r e f o u r months so t h e i r o t h e r o r g a n s d o n ' t g e t damaged. So r i g h t away you t h i n k , ' w e l l , why a r e t h e y l e a v i n g B r e n t u n t i l h e ' s a y e a r ? ' But y o u know, we t r u s t t h e i r j u d g m e n t and I'm s u r e t h a t t h e y w o u l d n e v e r — I mean, D r . B. s a i d he's t h e r i g h t w e i g h t t h a t t h e y c o u l d do i t now so I'm s u r e t h a t t h e y w o u l d i f a n y t h i n g needed t o be d o n e . H a v i n g i n f o r m a t i o n t h a t c o n t r a d i c t e d t h e t r e a t m e n t p l a n mapped o u t by t h e c h i l d ' s p h y s i c i a n s r e s u l t e d i n some d o u b t . I t i s o b v i o u s t h o u g h t h a t t h i s m o t h e r has an i n t e n s e need t o t r u s t and she seems t o f e e l p o w e r l e s s t o q u e s t i o n t h e i r j u d g e m e n t . 87 S e v e r a l f a m i l i e s d e s c r i b e d one h e a l t h c a r e p r o f e s s i o n a l w i t h whom t h e y had a p a r t i c u l a r l y c l o s e r e l a t i o n s h i p . T h i s was t h e p e r s o n whom t h e y seemed t o t r u s t and t u r n t o t h e m o s t . The common q u a l i t i e s t h a t t h e s e i n d i v i d u a l s seemed t o p o s s e s s i n c l u d e d : d e m o n s t r a t i n g g e n u i n e c o n c e r n by s p e n d i n g a l o t o f t i m e w i t h t h e f a m i l i e s , b e i n g h o n e s t i n a n s w e r i n g q u e s t i o n s , and p r e p a r i n g t h e f a m i l i e s f o r u p c o m i n g e v e n t s by s h a r i n g r e l e v a n t i n f o r m a t i o n . I t i s i n t e r e s t i n g t o n o t e t h a t t h e t h r e e f a m i l i e s who d e s c r i b e d a " s p e c i a l " h e a l t h c a r e p r o f e s s i o n a l were a l s o t h e o nes who had t h e most s y m p t o m a t i c i n f a n t s . P e r h a p s t h e y had a g r e a t e r need t h a n t h e o t h e r s f o r a p a r t i c u l a r l y c l o s e , t r u s t i n g r e l a t i o n s h i p w i t h one h e a l t h c a r e p r o f e s s i o n a l t o h e l p them t h r o u g h t h e e x p e r i e n c e . One s u c h t r u s t e d i n d i v i d u a l was a c o m m u n i t y h e a l t h n u r s e . M: She's b e c o m i n g more l i k e a f r i e n d now. She's j u s t — w i t h o u t h e r , g o s h I d o n ' t know. L i k e you know, Roy g o es f o r h i s h e a r t c a t h e t e r on t h e f o u r t h o f May and s h e ' s g o i n g t o be h e r e on t h e f i f t h t o e x p l a i n e v e r y l i t t l e d e t a i l . L i k e I ' l l be t h e r e when t h e c a t h e t e r ' s o v e r and D r . B. w i l l be e x p l a i n i n g t h i s and I ' l l have t h e s e w o r d s , p r o b a b l y t h i s l o n g , a s k i n g him " w e l l , how do you s p e l l t h i s one and t h a t o n e ? " S h e ' l l be h e r e t h e n e x t day t o t e l l me what t h e y mean and t h i n g s l i k e t h a t . But s h e ' s become a r e a l l y , r e a l l y good f r i e n d and s h e - - r i g h t now s h e ' s a h — T o m and I a r e v e r y c o n f i d e n t a b o u t t h i s o p e r a t i o n — a b o u t a n y t h i n g t h a t ' s g o i n g t o be h a p p e n i n g w i t h Roy. I mean i t ' s s c a r y r i g h t now b u t s h e ' s more o r l e s s g e t t i n g us p r e p a r e d f o r t h e w o r s t and f o r t h e b e s t . 88 T h i s c o m m u n i t y h e a l t h n u r s e p r o v i d e d e m o t i o n a l and i n f o r m a t i o n a l s u p p o r t t o t h e f a m i l y . She was o b v i o u s l y a t r u s t e d p r o f e s s i o n a l whom t h i s m o t h e r w o u l d r a t h e r a s k some q u e s t i o n s o f t h a n t h e c a r d i o l o g i s t . A n o t h e r c o u p l e d e s c r i b e d 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 l i n i c a l n u r s e s p e c i a l i s t as b e i n g v e r y p o s i t i v e . F: Um, t h e r e was a b i t o f a d e l a y when he f i r s t went i n b e c a u s e t h e n u r s e s p e c i a l i s t , n u r s e p r a c t i t i o n e r o r n u r s e s p e c i a l i s t . . I : C l i n i c a l n u r s e s p e c i a l i s t , maybe? F: Y e a h , she was o f f s i c k so she n e v e r came t o t a l k t o us t h e f i r s t t i m e . M: And I ended up g o i n g t o t h e s o c i a l w o r k e r . F: Y e a h . She ( c l i n i c a l n u r s e s p e c i a l i s t ) was r e a l l y g o o d — m a y b e t h e r e s h o u l d have been a b a c k - u p — a n o t h e r one t h a t comes f r o m a n o t h e r ward o r w h a t e v e r t h e y ' v e g o t . B e c a u s e she w a s — y o u know, t h a t w o u l d have been n i c e t o t a l k t o h e r t h e f i r s t t i m e we were i n t h e r e b e c a u s e she d i d have a l o t o f l i t t l e t i d b i t s and i n f o r m a t i o n and u h , was a good p e r s o n t o t a l k t o — s p e n t a l o t o f t i m e . M: When we went i n f o r t h e h e a r t c a t h . we f i n a l l y met he r . One i n f a n t was h o s p i t a l i z e d i n t h e c o m m u n i t y h o s p i t a l w i t h c o n g e s t i v e h e a r t f a i l u r e . T h i s f a m i l y d e s c r i b e d t h e i r p r e v i o u s e x p e r i e n c e w i t h t h i s h o s p i t a l i n a v e r y n e g a t i v e way. However, t h i s t i m e , a c t i o n s on t h e p a r t o f c e r t a i n h e a l t h c a r e p r o f e s s i o n a l s l e f t a more p o s i t i v e i m p r e s s i o n . M: Um, b u t when he went i n t h e s e c o n d t i m e , i t was d i f f e r e n t b e c a u s e t h e p e d i a t r i c i a n put him i n t h e r e . She came w i t h me t o t h e h o s p i t a l , c h e c k e d him i n . . . . she showed me, y o u know, where you c o u l d see t h e f l u i d s i n t h e l u n g s and t h a t . . . . Um, she was t h e r e e v e r y d a y . Um, t h e y w o u l d phone h e r a b o u t a n y t h i n g . You know, " o h , s h o u l d we chan g e t h i s o r c h a n g e t h a t ? " So, and he was n o t i n t h e n u r s e r y . He was i n t h e p e d i a t r i c ward and 89 t h e c a r e I f o u n d was a l o t d i f f e r e n t . And t h e y w e r e , more c o n f i d e n t i t seemed, w i t h what t h e y were d o i n g . H a v i n g a p h y s i c i a n , whom she o b v i o u s l y t r u s t e d , m o n i t o r i n g h e r c h i l d ' s p r o g r e s s was a m a j o r c o n t r i b u t i n g f a c t o r t o h e r c h a n g e i n a t t i t u d e . To s u m m a r i z e t h e n , t h e a b i l i t y t o t r u s t t h e h e a l t h c a r e p r o f e s s i o n a l s a r o s e f r o m an i n t e n s e need t o do s o , as w e l l as t h e p r e s e n c e o f c e r t a i n q u a l i t i e s i n t h a t p r o f e s s i o n a l . The most i m p o r t a n t c h a r a c t e r i s t i c s were a c o n f i d e n t manner and g e n u i n e c o n c e r n d e m o n s t r a t e d by s p e n d i n g q u a l i t y t i m e w i t h t h e f a m i l i e s . S e e k i n g S u p p o r t As was m e n t i o n e d i n d i s c u s s i n g t h e p r e v i o u s c o p i n g s t r a t e g y o f " t r u s t i n g h e a l t h c a r e p r o f e s s i o n a l s , " t h e r e was s o m e t i m e s one p a r t i c u l a r p e r s o n who seemed t o be most t r u s t e d and s o u g h t o u t f o r s u p p o r t . A l t h o u g h some f a m i l i e s had a c l o s e s u p p o r t i v e r e l a t i o n s h i p w i t h one p a r t i c u l a r h e a l t h c a r e p r o f e s s i o n a l , t h i s d i d n o t a p p e a r t o be a g e n e r a l i z e d phenomenon. T h e r e f o r e , t h i s s e c t i o n w i l l encompass o n l y t h e s o c i a l s u p p o r t n e t w o r k t h a t f a m i l i e s r e l i e d on f o r a s s i s t a n c e d u r i n g t h i s e x p e r i e n c e . The s u p p o r t o f r e l a t i v e s was i m p o r t a n t t o most o f t h e f a m i l i e s . B e i n g a b l e t o t a l k t o s y m p a t h e t i c g r a n d p a r e n t s was i d e n t i f i e d as h e l p f u l . M: L i k e we, we y o u k n o w — I t a l k t o my p a r e n t s more a b o u t i t now. I t h i n k t h e y c a n r e a l l y s o r t o f s y m p a t h i z e w i t h u s . 90 E x t e n d e d f a m i l y s o m e t i m e s p r o v i d e d needed r e a s s u r a n c e a b o u t t h e p a r e n t s ' c a r e t a k i n g a b i l i t i e s . M: I t ' s r e a l l y h e l p e d h a v i n g my mum h e r e b e c a u s e when I ' v e been w o r r i e d t h a t he w a s n ' t e a t i n g e n o u g h , y o u j u s t k i n d o f had someone t o t a l k t o and f a l l b a c k o n - - l i k e f r i e n d s a r e f i n e b u t s o m e t i m e s y o u want someone l i k e y o u r own m o t h e r o r m o t h e r - i n - l a w — I mean t h a t ' s someone t h a t you f i g u r e t h e y ' v e r a i s e d u s , so t h e y must know w h a t ' s g o i n g on. F o r a few f a m i l i e s , h a v i n g no r e l a t i v e s n e a r b y was i d e n t i f i e d as m a k i n g t h e s i t u a t i o n more d i f f i c u l t . M: Y a , no f a m i l y h e r e a t a l l . I : Do y o u f i n d t h a t h a r d ? M: I t ' s v e r y h a r d ! Not — l i k e when he's w o r k i n g days o r e v e n , y o u know, when he's o u t o f town o r t h a t , t h e r e ' s nobody f o r me t o go even t o v i s i t . I'm i n t h e house w i t h t h e two o f them, y o u know, so i t ' s h a r d — o r even t o l e a v e him w i t h somebody, l i k e w i t h my m o t h e r o r h i s m o t h e r o r t h a t — b u t a t l e a s t i t ' d be some f r e e d o m away f o r a w h i l e . . . F: ... we f i g u r e d we were r e a l l y i n d e p e n d e n t and s t r o n g and c o u l d g e t a l o n g , y o u know, r e a l l y w e l l on o u r own. T h i s h a s s o r t o f p r o v e d t h a t t h i n g s come up and we r e a l l y n eed o t h e r p e o p l e a r o u n d , e s p e c i a l l y y o u r f a m i l y . . . L i k e when y o u ' v e g o t , y o u know, p e o p l e r e l a t e d — c l o s e l y r e l a t e d t o you r i g h t t h e r e — y o u c a n r e a l l y l e a n on them, s a y i n g a n y t h i n g y o u w a n t , b e h a v e t h e way you w a n t . Most f a m i l i e s a g r e e d t h a t t h e s u p p o r t t h a t r e l a t i v e s g a ve was o f a more m e a n i n g f u l q u a l i t y t h a n t h a t o f f e r e d by f r i e n d s . At t h e same t i m e h o w e v e r , r e l a t i v e s o f t e n demanded more i n t h e way o f e x p l a n a t i o n s and r e a s s u r a n c e t h a n d i d f r i e n d s so t h e i r s u p p o r t had a n e g a t i v e edge t o i t . Sometimes s u p p o r t was s o u g h t f r o m f r i e n d s o r r e l a t i v e s who were a l s o h e a l t h c a r e p r o f e s s i o n a l s . 91 F: One o f my c o u s i n s h e r e i s a d o c t o r so i f we have a p r o b l e m we c a n a s k h i m . I t ' s a c o m f o r t t o o . Not o n l y was e m o t i o n a l s u p p o r t i m p o r t a n t b u t s p e c i f i c p r a c t i c a l a c t i o n s a l s o h e l p e d . F: Our f r i e n d s were r e a l l y g o o d . They were e x c e l l e n t . P e o p l e f r o m a r o u n d h e r e r i g h t now. They were l o t s o f h e l p . The n e i g h b o u r s were b r i n g i n g f o o d o v e r . M: H o l y h e a v e n s ! That was i n c r e d i b l e ! F: They were a l w a y s h e r e , w a n t i n g t o d r i v e Mary h e r e o r t h e r e i f I had t o work o r w h a t e v e r . The s o c i a l s u p p o r t n e t w o r k was p a r t i c u l a r l y i m p o r t a n t a t t h e t i m e o f p a l l i a t i v e s u r g e r y . H a v i n g r e l a t i v e s s p end t i m e w i t h t h e c h i l d i n t h e h o s p i t a l g a v e t h e p a r e n t s a needed b r e a k . I : And how h a v e y o u r f a m i l i e s been when she had t h i s s u r g e r y ? M: G r e a t - - t h e y were t h e r e a l m o s t e v e r y d a y , down a t th e h o s p i t a l — s o r t o f r e l i e v i n g us e v e r y now and t h e n . They were r e a l l y g o o d . Sometimes t h e b e s t s u p p o r t was f o u n d i n t h e s p o u s e . F o r one m o t h e r , h e r h u s b a n d ' s s u p p o r t was i n t e g r a l t o c o p i n g w i t h t h e ICU e n v i r o n m e n t . M: W e l l a h , we were a l w a y s t h e r e t o g e t h e r b u t j u s t — t h i s i s a v e r y s c a r y p l a c e f o r me and I f i n d i n s i t u a t i o n s l i k e t h a t I t e n d n o t t o a s k q u e s t i o n s , y o u know, and p e o p l e — t h e y ' r e t e l l i n g me s o m e t h i n g , I u n d e r s t a n d i t b u t I d o n ' t u n d e r s t a n d i t , y o u know. So t h a t way, w i t h h i m t h e r e , I l e t him do a l l t h e t a l k i n g and a l l t h e a s k i n g and t h e n when I g e t home I a s k h i m , y o u know... One f a m i l y had t h o u g h t a b o u t c o n t a c t i n g a p a r e n t s u p p o r t g r o u p a t t h e t i m e o f t h e i r b a b y ' s p a l l i a t i v e s u r g e r y b u t n e v e r d i d . They d i d h o w e v e r , f i n d i t h e l p f u l t o t a l k t o o t h e r p a r e n t s t h e y met i n t h e h o s p i t a l . 92 M: ... I e n j o y e d t a l k i n g t o them and I t h i n k t h e y f e l t t h e same way. I : A b l e t o s h a r e some o f t h e same f e e l i n g s . M: Yup, 'c a u s e nobody c a n r e a l l y u n d e r s t a n d i t u n l e s s i t h a ppens t o y o u . These p a r e n t s v a l u e d t h e u n i q u e k i n d o f s u p p o r t t h a t p a r e n t s who have e x p e r i e n c e d a s i m i l a r s i t u a t i o n c a n o f f e r . A n o t h e r f a m i l y i n t e n d e d t o c o n t a c t a p a r e n t s u p p o r t g r o u p a t t h e t i m e o f t h e c o r r e c t i v e s u r g e r y . I n summary t h e n , a s u p p o r t i v e n e t w o r k o f r e l a t i v e s , f r i e n d s and o t h e r p a r e n t s was i m p o r t a n t t o a l l o f t h e f a m i l i e s . T h i s n e t w o r k o f f e r e d a s s i s t a n c e i n t h e f o r m o f , e m o t i o n a l , p r a c t i c a l , and i n f o r m a t i o n a l s u p p o r t t h u s h e l p i n g f a m i l i e s t o a t t a i n t h e g o a l s f o r t h i s t r a n s i t i o n p e r i o d . The s u p p o r t was p a r t i c u l a r l y i m p o r t a n t a t c e r t a i n more s t r e s s f u l t i m e s , f o r e x a m p l e when t h e c h i l d was h o s p i t a l i z e d f o r p a l l i a t i v e s u r g e r y . B e i n g V i g i l a n t A p e r i o d o f v i g i l a n c e o r a l e r t w a t c h f u l n e s s was d e s c r i b e d by a l l t h e p a r e n t s . T h i s o c c u r r e d once t h e y had t h e i n f a n t home f r o m t h e h o s p i t a l and was n e c e s s a r y t o d i s p e l t h e i r f e a r s t h a t t h e c h i l d ' s c o n d i t i o n m i g h t d e t e r i o r a t e . The l e n g t h o f t i m e t h a t t h i s s t r a t e g y was u s e d , v a r i e d d e p e n d i n g on a number o f c i r c u m s t a n c e s . F o r h a l f o f t h e c o u p l e s , u s e o f t h i s s t r a t e g y was s h o r t l i v e d , f r o m two weeks t o two m o n t h s , b e c a u s e o f t h e good c o n d i t i o n o f t h e i n f a n t . F: T h a t was s o m e t h i n g , i n t h e b e g i n n i n g a t l e a s t , we r a n v e r y q u i c k l y i f he was c r y i n g . I d o n ' t know 93 why. And a l s o we c h e c k e d him v e r y o f t e n when we went t o b e d . I : So t h a t was a b i t d i f f e r e n t t h a n . . F: Yup, I a t l e a s t , woke up and c h e c k e d h i s b r e a t h i n g . I n e v e r d i d t h a t w i t h M a r y . I : How l o n g d i d you f i n d t h a t s o r t o f went on? F: A c o u p l e o f m o n t h s . M: Y e a h , when you saw t h a t n o t h i n g was w r o n g . I : Do y o u t h i n k t h a t h a v i n g a n o t h e r c h i l d f i r s t , made a d i f f e r e n c e ? M: D e f i n i t e l y . I t h i n k i t w o u l d be t e r r i b l e h a v i n g t h e f i r s t o n e . Oh! I : I n what way? M: Oh, I w o u l d be s o - - f i r s t o f a l l g e t t i n g a c h i l d t h e n t a k i n g c a r e o f i t - - j u s t t h a t p a r t you a r e r e a l l y u n e a s y a b o u t t h a t . Then k n o w i n g t h a t he has a h e a r t p r o b l e m on t o p — t h a t w o u l d be j u s t — o h , I t h i n k t h a t w o u l d be h a r d . I : D i d y o u f i n d y o u r s e l f c o m p a r i n g him t o h e r ? M: Oh y e a h , j u s t t o make s u r e . A l l o f t h e c o u p l e s who had o t h e r c h i l d r e n t a l k e d a b o u t c o m p a r i n g t h e new b aby t o t h e o l d e r c h i l d t o d e t e r m i n e any d e v i a t i o n f r o m t h e "norm." Thus t h e y were a b l e t o d e c i d e w h e t h e r t h e r e was any need f o r c o n t i n u e d v i g i l a n c e . I : Do y o u t h i n k h a v i n g had a n o t h e r baby b e f o r e , t h a t i t was maybe e a s i e r t o o ? F: Oh, y e s . M: I t w o u l d have been t w i c e as h a r d i f i t was t h e f i r s t . F: We w o u l d n ' t have known r e a c t i o n s o r what t o do. W i t h t h e f i r s t one o b v i o u s l y , I mean t h e r e was e x p e r i e n c e t h e r e . You know, t h a t one was n o r m a l so i t was e a s y t o c o m p a r e . W e l l , t h e f i r s t one c o u l d do t h i s and so o n . Oh y e a h , I t h i n k i t made i t a l o t e a s i e r t o h ave one b e f o r e h a n d . I t m i g h t 94 have b e e n — a t t h i s s t a g e we p r o b a b l y w o u l d have been t h e same where we a r e r i g h t now, b u t t h o s e f i r s t few months p r o b a b l y w o u l d have been a l o t wor se . The r e m a i n i n g t h r e e c o u p l e s were n o t a b l e t o r e l a x as much a f t e r t h e i n i t i a l p e r i o d o f v i g i l a n c e . T h e i r i n f a n t s showed more o b v i o u s symptoms o f t h e u n d e r l y i n g h e a r t p r o b l e m and t h e y t h e r e f o r e m a i n t a i n e d a c e r t a i n d e g r e e o f w a t c h f u l n e s s . They d e s c r i b e d t h e symptoms and t h e i r r e s p o n s e s t o t h e i n f a n t s t h i s way. M: ...even t h o u g h we c o u l d p r o b a b l y l e t him c r y f o r a w h i l e he t e n d s t o go b l u e . . . . So i n t h a t way s o m e t i m e s I t h i n k 'oh, o t h e r m o t h e r s c a n j u s t l e t t h e b a b y , i f t h e y ' r e j u s t b e i n g , t o t h e p o i n t where t h e y j u s t know t h a t t h e y want t o g e t u p — t h e r e ' s n o t h i n g wrong w i t h them and j u s t l e t t i n g them c r y and go b a c k t o s l e e p ' and I j u s t d i d n ' t f e e l r i g h t d o i n g t h a t w i t h him and I t h i n k — f e e l i n g a l l s o r r y f o r m y s e l f . A l t h o u g h a p o s i t i v e c o p i n g s t r a t e g y i n d e c r e a s i n g a n x i e t y , v i g i l a n c e was a l s o a s s o c i a t e d w i t h f r u s t r a t i o n . F: Some n i g h t s , maybe y o u ' d even l e t a baby who's r e a l l y b e i n g a p e s t , y o u know, j u s t l e t him c r y f o r a w h i l e . . . . w i t h h i m , y o u j u s t d r o p w h a t e v e r y o u ' r e d o i n g and go a f t e r him and p i c k h i m up and t r y and c a l m h i m down, ' c a u s e . . M: 'Cause I mean he j u s t r e a l l y g e t s , y o u know, w e l l u p s e t . F: He r e a l l y g e t s h i m s e l f w o r k e d up and t h a t ' s n o t t h a t g r e a t f o r him and r e a l l y n o t c i r c u l a t i n g a l l t h a t w e l l , so . . 1: Does h i s c o l o u r c h a n g e a t a l l ? M: Oh y a ! Y a , and he g e t s v e r y clammy. I : Does he? M: Ya! H i s b r e a t h i n g p a t t e r n s j u s t , y o u know, t h r o w n r i g h t o f f what i t was. Y a , y o u t r y t o l e t h i m , y o u know, c r y a b i t , b u t l i k e I s a y , y o u d o n ' t l e t him c r y t o o l o n g . 95 S e v e r a l p a r e n t s w o u l d n o t l e a v e t h e i r i n f a n t s w i t h a b a b y s i t t e r b e c a u s e t h e y were a f r a i d o f what m i g h t happen i n t h e i r a b s e n c e , t h e r e f o r e , t h e y m a i n t a i n e d a p e r s o n a l w a t c h o v e r t h e i r c h i l d r e n . As a r e s u l t , t h e y c o u l d n o t g e t o u t as a c o u p l e and f e l t " t i e d down." M: And I r e a l l y d o n ' t want t o l e a v e h i m w i t h a s i t t e r y e t , f o r t h e s i m p l e f a c t t h a t he d o e s go i n t o c r y i n g f i t s , and a h , I c a n c a l m hi m down. He ( h u s b a n d ) can c a l m him down s o m e t i m e s , b u t f o r a s i t t e r t h e y may g e t p a n i c k y and a h , y o u know, "why's he c r y i n g , why's he c r y i n g ? " and a l l t h i s h e r e . . . M: I mean my m o t h e r u s u a l l y b a b y s i t s f o r us now, b u t I c o u l d t e l l w i t h o u t h e r c o m i n g o u t and s a y i n g i t t h a t she was j u s t s c a r e d t o b a b y s i t f o r t h e f i r s t t h r e e m o n t h s , b e c a u s e she j u s t d i d n ' t , d i d n ' t know what t o do w i t h h i m — o r you know, i f s o m e t h i n g w o u l d happen t o h i m . So f o r t h e f i r s t t h r e e months we b a s i c a l l y d i d n ' t go a n y w h e r e . . . F: U n t i l he g e t s o v e r t h i s h e a r t t h i n g , t h e r e ' s no r e a l — I f e e l s a f e f o r us t o be h e r e anyway. J u s t t o be s u r e . I f s o m e t h i n g does h a p p e n , I ' d f e e l a w f u l l y g u i l t y i f I was o u t somewhere. B o t h o f u s , e s p e c i a l l y i f I t was t h e b o t h o f u s . T h i s t h i r d f a m i l y had i n f a c t l e f t t h e i r b aby w i t h a s i t t e r when t h e i n v e s t i g a t o r i n t e r v i e w e d them two months l a t e r . M: ... But i t was good f o r us t o g e t o u t t o g e t h e r . We need t h a t — w e d e f i n i t e l y need t h a t . I f y o u want t o s t a y s a n e , y o u know. So i t was good and i t was f i n e . H e r e , t h e y were u t i l i z i n g t h e o p p o s i t e s t r a t e g y o f n o r m a l i z i n g w h i c h w i l l be d e s c r i b e d i n t h e n e x t p a r t o f t h i s s e c t i o n . To s u m m a r i z e t h e n , p a r e n t s were most v i g i l a n t when t h e i n f a n t was f i r s t home f r o m t h e h o s p i t a l . B e i n g v i g i l a n t 96 e n a b l e d them t o e n s u r e t h a t t h e i r i n f a n t r e c e i v e d p r o p e r c a r e and i t a l s o d e c r e a s e d t h e i r u n c e r t a i n t y a b o u t t h e c h i l d ' s c o n d i t i o n . Those f a m i l i e s whose c h i l d r e n were q u i t e s y m p t o m a t i c m a i n t a i n e d a c e r t a i n d e g r e e o f w a t c h f u l n e s s t h r o u g h o u t t h e t r a n s i t i o n p e r i o d . Use o f t h i s s t r a t e g y o v e r t h e l o n g t e r m r e s u l t e d i n t h e p a r e n t s f e e l i n g " t i e d down" and f r u s t r a t e d . N o r m a l i z i n g N o r m a l i z i n g i s an o v e r a l l c o p i n g s t r a t e g y t h a t d e s c r i b e s t h e t a c t i c s p a r e n t s u s e d t o make t h e i r c h i l d ' s l i f e and f a m i l y l i f e "as n o r m a l as p o s s i b l e . " Of c o u r s e , e a c h f a m i l y ' s d e f i n i t i o n o f n o r m a l v a r i e d . B e c a u s e t h e t r a n s i t i o n p e r i o d i n c l u d e d n o t o n l y t h e u n e x p e c t e d e v e n t o f t h e d i a g n o s i s o f CHD b u t a l s o t h e i n c o r p o r a t i o n o f a new c h i l d i n t o t h e f a m i l y , t h e p a r e n t s d i d n o t e x p e c t t h e i r l i v e s t o be e x a c t l y as t h e y were b e f o r e t h e b i r t h . Some o f t h e p a r e n t s b a s e d t h e i r e x p e c t a t i o n s on p r e v i o u s e x p e r i e n c e w i t h i n c o r p o r a t i n g a n e w b o r n i n t o t h e f a m i l y . F o r t h e two c o u p l e s who were f i r s t - t i m e p a r e n t s , e x p e c t a t i o n s were b a s e d on k n o w l e d g e o f t h e i r r e l a t i v e s ' and f r i e n d s ' e x p e r i e n c e s a t s u c h a t i m e . A t t e m p t i n g t o n o r m a l i z e t h e s i t u a t i o n became an i m p o r t a n t c o p i n g s t r a t e g y f o r most p a r e n t s d u r i n g t h e f a c e t o f " a d j u s t i n g t o c a r i n g f o r c h i l d once home." I t f o l l o w e d t h e s t r a t e g y o f v i g i l a n c e and was c o n t r a d i c t o r y t o v i g i l a n c e . N o r m a l i z i n g was i m p o r t a n t f o r s e v e r a l r e a s o n s . F i r s t o f a l l , i t was p a r t o f t h e a d v i c e g i v e n by most 97 p h y s i c i a n s and t h e p a r e n t s t h e m s e l v e s were a f r a i d t h a t t h e i r c h i l d w o u l d become s p o i l e d as a r e s u l t o f b e i n g t r e a t e d "as d i f f e r e n t . " Some p a r e n t s a l s o a d m i t t e d , a l t h o u g h r a t h e r s h e e p i s h l y , t o t h e i r i n i t i a l f r u s t r a t i o n w i t h h a v i n g t o r e s p o n d t o t h e c h i l d ' s c r i e s i m m e d i a t e l y . They w i s h e d t o c h a n g e t h i s p a t t e r n i f i t was s a f e f o r t h e i n f a n t . N o r m a l i z i n g was a t t e m p t e d by a l l o w i n g t h e c h i l d t o c r y f o r e v e r - i n c r e a s i n g p e r i o d s o f t i m e w h i l e t h e p a r e n t s w a t c h e d f o r any a d v e r s e e f f e c t s . M: They t o l d y o u n o t t o l e t h e r c r y t o o l o n g so you were g e t t i n g t o t h e p o i n t where y o u ' d j u s t h e a r h e r and y o u ' d go and p i c k h e r up. And t h e n we d e c i d e d t h a t - - t o t r e a t h e r j u s t l i k e a n o r m a l c h i l d and i t made me f e e l more a t e a s e b e c a u s e I mean i t d i d n ' t h u r t h e r , c r y i n g a l i t t l e l o n g e r t h a n what she n o r m a l l y w o u l d . She g o t u s e d t o i t . O t h e r w i s e , s h e ' d g e t s p o i l e d w h i c h y o u c a n ' t h a v e . I : So, when d i d y o u s o r t o f c h a n g e y o u r way o f d o i n g t h i n g s ? M: A b o u t a m onth. F: I ' d s a y a b o u t a m o n t h , y o u know. T h a t w a s — y o u know, y o u c a n ' t go on d o i n g i t t h a t way .... I f she s t a r t e d c r y i n g a b i t , l e t h e r c r y a b i t l o n g e r a n d , y o u know, we c o u l d see i t w a s n ' t a f f e c t i n g h e r . F o r some c o u p l e s , t h e f i r s t t r i p w i t h t h e i n f a n t r e i n f o r c e d t h e i r a b i l i t y t o a c h i e v e a h i g h l e v e l o f n o r m a l c y . I : Can y o u g i v e me a s e n s e o f when you f e l t y o u were a b l e t o r e l a x a b i t more w i t h h e r i n t h e b e g i n n i n g ? Do y o u remember? M: W e l l , i n S eptember we went away. We t o o k h e r c a m p i n g . T h a t was t h e f i r s t week o f September so she was o n l y a b o u t t h r e e weeks o l d o r f o u r weeks o l d . We f e l t p r e t t y c o m f o r t a b l e t h e r e . F: A f t e r , y e a h a f t e r a c o u p l e o f t r i p s t o t h e p e d i a t r i c i a n , D r . M., and he k e p t on s a y i n g t h a t e v e r y t h i n g ' s p e r f e c t and j u s t f i n e and y o u c a n 98 t a k e h e r a n y w h e r e , so a b o u t t h e n we went away w i t h h e r f o r f i v e o r s i x d a y s , c a m p i n g . M: We were way o u t i n t h e b o o n i e s , t o o . W e l l , we were o u t s i d e K a m p l o o p s . F: She was good i n t h e c a r and e v e r y t h i n g e l s e , so i t was p r e t t y g o o d . A f t e r t h a t we were p r e t t y w e l l , p r e t t y w e l l u s e d t o . . M: T h a t was a b o u t — w i t h i n a month a f t e r . . . . So, we're t r y i n g t o make t h i n g s as n o r m a l as p o s s i b l e . H a v i n g f a m i l y l i f e "as n o r m a l as p o s s i b l e " was a g o a l t h a t a l l t h e p a r e n t s c h e r i s h e d . However, t h e y had t o come to t e r m s w i t h v a r i o u s a s p e c t s o f l i v i n g w i t h a c h i l d w i t h CHD w h i c h c o u l d n o t be t h e way t h e y had o r i g i n a l l y p l a n n e d . T h e r e f o r e , some f a m i l i e s had t o a l t e r t h e i r e x p e c t a t i o n s and r e d e f i n e n o r m a l i n o r d e r t o d e c r e a s e t h e f r u s t r a t i o n a c c o m p a n y i n g u n s u c c e s s f u l a t t e m p t s t o make f a m i l y l i f e more no r m a l . A good e x a m p l e o f t h i s t a c t i c o f a l t e r i n g e x p e c t a t i o n s was i n c h a n g i n g t h e mode o f f e e d i n g . Two o f t h e m o t h e r s who had i n i t i a l l y i n t e n d e d t o b r e a s t - f e e d had t o s u p p l e m e n t w i t h f o r m u l a . M: B u t when i t came t o b r e a s t - f e e d i n g v e r s u s b o t t l e f e e d i n g , um, i t was k i n d o f a c a t c h - 2 2 s i t u a t i o n b e c a u s e one was e a s i e r t o d i g e s t b u t one was e a s i e r t o n u r s e o u t o f so we j u s t d i d w h a t e v e r was b e s t f o r h i m and t h a t . M: And t h a t was a n o t h e r t h i n g t o o — w h e n I d i d b r i n g him home, n o t b r e a s t - f e e d i n g him f o r t h r e e w e e k s , I j u s t n e v e r g o t up t o ' f u l l l o a d ' I g u e s s you'd s a y . He c o m p l e t e l y d e p l e t e d my r e s e r v e o f b r e a s t -m i l k i n t h e f r e e z e r t h e f i r s t weekend we were home. And s o , i t was l i k e , b o i l i n g w a t e r u n t i l I g o t o u t t o t h e s t o r e t o g e t him some f o r m u l a . So I j u s t d e c i d e d a t t h a t p o i n t t h a t he was j u s t g o i n g t o have f o r m u l a and b r e a s t - m i l k . 99 One m o t h e r had t o t o t a l l y g i v e up t h e i d e a o f b r e a s t -f e e d i n g h e r i n f a n t b e c a u s e he was i n t h e h o s p i t a l f o r t h r e e m o n t h s . M: He had my b r e a s t m i l k f o r a month and a h a l f . I g o t t i r e d o f pumping and g ave i t up and t h a t was i t . I : Was t h a t a d i s a p p o i n t m e n t f o r you? M: I d o n ' t know. I n a way, y e a h . I n a way, n o . I t was a l i t t l e d i s a p p o i n t i n g a t f i r s t b u t - - I n e v e r knew what b o t t l e - f e e d i n g was l i k e . But i t i s n ' t t h a t bad . A l l o f t h e s e m o t h e r s t a l k e d a b o u t c h a n g i n g t h e mode o f f e e d i n g i n a v e r y m a t t e r - o f - f a c t s o r t o f way. They j u s t d i d what had t o be done and d i d n o t seem t o d w e l l on i t . P e r h a p s b e c a u s e b o t t l e - f e e d i n g i s s t i l l w i t h i n t h e r e a l m o f n o r m a l , i t was f a i r l y e a s y t o a d j u s t t o t h i s a l t e r n a t e mode. A l s o , o f g r e a t e r c o n c e r n was w h e t h e r o r n o t t h e i n f a n t was c o n s u m i n g e n o u g h . Most p a r e n t s c o n t i n u e d t o e m p l o y t h i s s t r a t e g y o f n o r m a l i z i n g t o one d e g r e e o r a n o t h e r t h r o u g h o u t t h e t r a n s i t i o n p e r i o d . One t a c t i c was t o s pend e x t r a t i m e w i t h t h e c h i l d and e n c o u r a g e p h y s i c a l d e v e l o p m e n t . However, when n o r m a l i z i n g t h e c h i l d ' s l i f e meant s p e n d i n g e x t r a t i m e , t h i s was n o t c o n s i s t e n t w i t h n o r m a l i z i n g f a m i l y l i f e . I : M r s . W-, y o u s a i d t h a t t h e d o c t o r s u g g e s t e d t h a t you t r e a t him l i k e any o t h e r c h i l d and t h a t you r e a l l y k e p t t h a t i n m i n d . M: Y a , y a . T h a t was r e a l l y t h e b e s t a d v i c e we e v e r g o t I t h i n k — t h a t , y o u know, j u s t t r e a t him l i k e a r e g u l a r c h i l d w i t h no p r o b l e m s . . . I t h i n k I have more i n my m i n d , e s p e c i a l l y w i t h p h y s i c a l a c t i v i t i e s , t h a t I do t r y a c t u a l l y t o push him t o see where h i s l i m i t s a r e and so f a r I h a v e n ' t r e a l l y — c o u l d have p u s h e d him f a r enough b e c a u s e 100 h e ' s r e a l l y a c t i v e and he seems t o e n j o y i t . Sometimes t h e r e was an e m o t i o n a l p e n a l t y t o pay f o r m a k i n g t h e c h i l d ' s l i f e "as n o r m a l as p o s s i b l e , " s u c h as when one m o t h e r d e c i d e d n o t t o t e l l t h e c h i l d ' s b a b y s i t t e r s a b o u t h i s h e a r t c o n d i t i o n . M: W e l l , s o m e t i m e s I f e e l g u i l t y t h a t I d o n ' t i n c a s e s o m e t h i n g s h o u l d happen y e t I know i n my mind t h a t , y o u know, t h e r e i s 99.9% c h a n c e o f n o t h i n g h a p p e n i n g w i t h h i m w h i l e t h e y l o o k a f t e r h i m . And I d o n ' t t h i n k he s h o u l d g e t s p e c i a l t r e a t m e n t and I'm a f r a i d i f I do t e l l p e o p l e — a t l e a s t t h a t ' s what I ' v e s e e n , t h e f i r s t r e a c t i o n y o u g e t i s " o h , oh t h a t ' s t e r r i b l e , what c a n we d o ? " and t h e y g e t r e a l l y n e r v o u s a b o u t i t and u n e a s y a b o u t i t and t h e y d o n ' t r e a l l y know and t h e n you s t a r t t o l o o k f o r s i g n s t h a t a r e n ' t r e a l l y t h e r e so I t h i n k t h a t t h e b e s t t h i n g i s f o r them n o t k n o w i n g . . . . I : So, i t ' s i m p o r t a n t t o y o u t h a t p e o p l e t r e a t h i m n o r m a l l y and i f t h e y know a b o u t i t t h e y m i g h t n o t . M: E s p e c i a l l y s i n c e t h e d o c t o r s a i d t o o , i t made me more a w a r e . I t h o u g h t , y o u ' r e r i g h t r e a l l y b e c a u s e when he's o p e r a t e d on he's f i n e and t h e n h e ' l l d r a g on w i t h a l l t h i s s p e c i a l t r e a t m e n t s t h a t he g o t e a r l i e r and I t h i n k i t w i l l be u p s e t t i n g f o r t h e c h i l d t o o , s u d d e n l y f i n d i n g o u t t h a t I'm l i k e e v e r y b o d y e l s e and I d o n ' t g e t t h i s s p e c i a l t r e a t m e n t a n y m o r e . S i n c e t h e p a r e n t s c o u l d a n t i c i p a t e a t i m e when t h e i r c h i l d r e n w o u l d be a b l e t o l e a d n o r m a l l i v e s , i t was p a r t i c u l a r l y i m p o r t a n t t h a t t h e y be t r e a t e d "as n o r m a l as p o s s i b l e " f r o m t h e s t a r t . A l l o f t h e p a r e n t s p o i n t e d o u t numerous t i m e s , t h r o u g h t h e c o u r s e o f t h e i n t e r v i e w s , t h o s e q u a l i t i e s i n t h e i r c h i l d r e n t h a t were n o r m a l . By f o c u s i n g on t h e s e n o r m a l a s p e c t s t h e y were a b l e t o m i n i m i z e t h e u n d e r l y i n g h e a r t c o n d i t i o n . Of u t m o s t i m p o r t a n c e was t h e c h i l d ' s d i s p o s i t i o n . 101 F: He's c e r t a i n l y a l o t o f f u n t h o u g h . You know, y o u come home f r o m a bad day a t work and h e ' s s i t t i n ' t h e r e s m i l i n g a t y o u and a l l happy a n d — s o t h a t way i t ' s g o o d . F: But h e ' s a p r e t t y h appy l i t t l e g u y . M: He s u r e i s . F: He's p r e t t y e a s y t o t a k e c a r e o f . J u s t g i v e him h i s b o t t l e o r g i v e him h i s s u c k e y . He l i k e s t o be h e l d - - h e l o v e s t o be h e l d - - j u s t a t y p i c a l n o r m a l l i t t l e b a b y . I f t h e c h i l d was happy t h e n t h e p a r e n t s c o u l d f e e l some d e g r e e o f o p t i m i s m . A n o t h e r i m p o r t a n t c h a r a c t e r i s t i c was t h e c h i l d ' s m e n t a l d e v e l o p m e n t -Mr A l o t o f o u r f r i e n d s j u s t had b a b i e s , y o u know, a month b e f o r e o r a month a f t e r , a c r o s s t h e s t r e e t and y o u know, y o u c a n r e a l l y see t h e d i f f e r e n c e . F: W i t h h i s s i z e m a i n l y — h i s a l e r t n e s s , h e ' s r e a l l y , y o u know, he d o e s n ' t m i s s much. F: T h a t ' s one t h i n g , I'm n o t w o r r i e d a b o u t h i s m e n t a l d e v e l o p m e n t a t a l l . 'Cause as f a r as I c a n s e e , h e ' s r i g h t up f o r what he s h o u l d be d o i n g . A l t h o u g h t h e c h i l d r e n were g e n e r a l l y s m a l l e r t h a n n o r m a l , s e v e r a l p a r e n t s t a l k e d a b o u t t h e f a c t t h a t t h i s d i d n o t n e c e s s a r i l y s l o w t h e i r a c t i v i t y . M: Then he i s t h e t y p e o f c h i l d t h a t seems t o g e t i n t r o u b l e a l l t h e t i m e t o o . He c u t t h e t i p o f f h i s f i n g e r . He b r o k e h i s arm.... F: I n a way t h a t ' s a good t h i n g . I t shows, a t l e a s t , t h a t he's a c t i v e and n o r m a l . F: We k i d o u r s e l v e s j o k i n g l y a b o u t how h e ' s g o i n g t o be t h e t e r r o r o f t h e n e i g h b o u r h o o d ' c a u s e he n e v e r s i t s s t i l l . As s o o n as h e ' s awake he' s g o i n ' . You know, Donna t a k e s c a r e o f t h e baby a c r o s s t h e 102 r o a d on W e d n e s d a y s — a n d B r e n t , h e ' s b i g g e r t h a n B r e n t — s a m e a g e , t h e y were b o r n t h e same d a y — but B r e n t i s v e r y a g g r e s s i v e t o w a r d s h i m . O t h e r " n o r m a l " c h i l d r e n p r o v i d e d a y a r d s t i c k a g a i n s t w h i c h t o m e a s u r e t h e c h i l d w i t h t h e h e a r t c o n d i t i o n . M: She's o n l y been s i c k — s h e ' s had one c o l d s i n c e s h e ' s been b o r n w h i c h i s , y o u know, g o o d . My s i s t e r - i n - l a w — a l l t h e i r k i d s — t h e y ' v e had c o l d s you know, t h r e e o r f o u r c o l d s i n t h e i r f i r s t f i v e m o n t h s . The i m p o r t a n c e o f m a k i n g l i f e "as n o r m a l as p o s s i b l e " became o b v i o u s i n t h e p a r e n t s ' r e a c t i o n s t o c e r t a i n comments. Those p a r e n t s who p e r c e i v e d t h e i r l i v e s as q u i t e n o r m a l g o t a n g r y when p e o p l e i n s i n u a t e d o t h e r w i s e . M: They seem t o f e e l s o r r y f o r y o u . They d o n ' t e v e n know what h e ' s l i k e r e a l l y b u t t h e y j u s t , "Oh, I d o n ' t know how y o u do i t " . . . . and we s a i d , " t h e r e ' s n o t h i n g t o do r e a l l y — r e a l l y r i g h t now, he ' s j u s t l i k e a n o r m a l b a b y . " C o m p a r i n g t h e i r l i v e s t o t h o s e o f f r i e n d s w i t h h e a l t h y c h i l d r e n s o m e t i m e s h e l p e d r e i n f o r c e t h a t t h e y were n o t t h a t d i f f e r e n t . M: We r e a l l y h a v e n ' t c h a n g e d o u r l i v e s t h a t much. A l l o f o u r f r i e n d s had b a b i e s — h a d them l a s t y e a r as w e l l — a n d we do a l o t o f t h i n g s w i t h them. So, l i k e t h e k i d s a r e a l w a y s t h e r e . I : You f e e l what y o u ' r e d o i n g i s a b o u t t h e same as what y o u r f r i e n d s a r e d o i n g . M: Y e a h . F: Y e a h , s t a y i n g home more o f t e n . B e c a u s e t h e s e i n f a n t s t o o k e x t r a t i m e , t h e f a m i l i e s had t o a d j u s t t h e i r l i f e s t y l e s and c u r t a i l some o f t h e i r n o r m a l a c t i v i t i e s . The p a r a d o x i c a l p a r t o f n o r m a l i z a t i o n i s i l l u s t r a t e d h e r e . F a m i l y l i f e c o u l d o f t e n n o t be n o r m a l 103 i f t h e c h i l d ' s l i f e was t o be "as n o r m a l as p o s s i b l e . " I t became v e r y i m p o r t a n t f o r t h e f a t h e r s t o h e l p w i t h c h i l d c a r e when t h e y were home. T h i s a l l o w e d m o t h e r s t o engage i n some o f t h e i r n o r m a l a c t i v i t i e s . M: M a r k ' s r e a l l y a c t i v e i n s p o r t s and h e ' s had t o s l o w down a b i t . I j u s t f i n d w i t h B r e n t b e c a u s e he t a k e s a l o t o f t i m e — h e ' s j u s t n o t happy t o s i t t h e r e by h i m s e l f b e c a u s e he's j u s t u s e d t o t h e — a l o t o f a t t e n t i o n . So when Mark g e t s home i t ' s "you l o o k a f t e r h i m f o r an h o u r and I'm g o i n g away t o do s o m e t h i n g e l s e " so you know, i n t h a t way.. F: I p u t a l o t o f t h i n g s on h o l d - - a l o t o f t h i n g s we w a n t e d t o d o . I : L i k e what? F: Oh w e l l , I w a n t e d t o go t o s c h o o l , y o u know, a t n i g h t . I ' v e s o r t a had t r o u b l e d o i n g a n y t h i n g , l i k e o t h e r t h a n work and a h , j u s t i f y i n g t h a t t o m y s e l f , y o u know. 'Cause I wanna s p e n d t i m e a t home and a h , I l i k e t o go o u t and work o u t , t h i n g s l i k e t h a t . And I h a v e n ' t been d o i n g t h a t f o r q u i t e a w h i l e s i n c e he was b o r n b e c a u s e I j u s t f i n d I , y o u know, j u s t c a n ' t s a y , " w e l l , I ' l l go out two o r t h r e e n i g h t s a week" and be away, y o u know, ev e n f o r an h o u r o r two a t n i g h t . . . You've s t i l l g o t y o u r m e e t i n g s o n c e a m o n t h , e h ! M: Ya! F: Y o u r b i g n i g h t o u t ! M: Y a , b i g n i g h t o u t ! I ' m on t h e c o u n c i l f o r t h e s t r a t a . So my one n i g h t o u t a month I l e a v e him i f h e ' s c r y i n g o r n o t . I j u s t w a l k o u t t h e d o o r . A l t h o u g h s h a r i n g c h i l d c a r e r e s p o n s i b i l i t i e s e n a b l e d t h e m o t h e r s t o p u r s u e some o f t h e i r n o r m a l a c t i v i t i e s , t h i s s o m e t i m e s p o s e d a p r o b l e m b e c a u s e t h e b a b i e s had g o t t e n u s e d t o t h e p r i m a r y c a r e g i v e r s . M: I t seems as t h o u g h he d o e s n ' t t a k e t o J e f f t o o w e l l . ( l a u g h s ) 104 F: No, he d o n ' t l i k e me t h a t much. M: You know, h e ' l l be as happy as a n y t h i n g and l e t him s t a y d o w n s t a i r s w i t h J e f f , and two m i n u t e s l a t e r h e ' s j u s t c r y i n g b l u e m u r d e r . And o f c o u r s e I'm d o w n s t a i r s g e t t i n g h i m — I p i c k h i m up and you know, s o m e t i m e s h e ' l l s l o w down r i g h t away and o t h e r t i m e s h e ' l l t a k e a w h i l e . M: I went t o an a e r o b i c s c l a s s l a s t n i g h t and h a l f an h o u r l a t e r — T o m s a i d , he n e v e r s t o p p e d c r y i n g u n t i l I g o t home. He was c r y i n g h i s head o f f and t h e n I p i c k e d him up and g ave him a few k i s s e s and he s t o p p e d . I n an a t t e m p t t o n o r m a l i z e t h e home r o u t i n e one p a r t i c u l a r l y h a r a s s e d m o t h e r made h e r s e l f a s c h e d u l e . M: Made m y s e l f a s c h e d u l e on what t o d o , y o u know, t h i s day I do t h e w a s h i n g and i r o n i n g , vacuum on T u e s d a y . I had t o p u t on s c h e d u l e f o r m y s e l f 'cause I w a s n ' t g e t t i n g a n y t h i n g d one. I t ' s w o r k e d o u t p r e t t y g o o d . A l t h o u g h none o f t h e o t h e r m o t h e r s t a l k e d a b o u t a s c h e d u l e , s e v e r a l d i d m e n t i o n t h e i m p o r t a n c e o f t h e f a t h e r ' s h e l p w i t h c h i l d c a r e t o a l l o w them t o t e n d t o h o u s e h o l d c h o r e s . I n e m p l o y i n g t h e t w o - p r o n g e d c o p i n g s t r a t e g y o f n o r m a l i z i n g , p a r e n t s were a t t e m p t i n g t o a t t a i n t h e two g o a l s o f k e e p i n g f a m i l y l i f e "as n o r m a l as p o s s i b l e " w h i l e p r o m o t i n g as n o r m a l a l i f e as p o s s i b l e f o r t h e c h i l d w i t h CHD. I t became a b a l a n c i n g a c t t r y i n g t o a c h i e v e b o t h g o a l s . Some o f t h e t a c t i c s u s e d w e r e : d e c r e a s i n g t h e amount o f t i m e s p e n t c h e c k i n g on t h e b a b y , g r a d u a l l y a t t e m p t i n g n o r m a l a c t i v i t i e s , a l t e r i n g e x p e c t a t i o n s , s p e n d i n g e x t r a t i m e e n c o u r a g i n g t h e c h i l d ' s d e v e l o p m e n t , f o c u s i n g on t h e c h i l d ' s n o r m a l a s p e c t s and w o r k i n g t o g e t h e r as a c o u p l e . The o t h e r g o a l p a r e n t s were t r y i n g t o a t t a i n 105 t h r o u g h use o f t h i s s t r a t e g y was t o m a i n t a i n an o p t i m i s t i c o u t l o o k . F o c u s i n g on t h e P r e s e n t One s t r a t e g y t h a t p a r e n t s e m p l o y e d t o h e l p them f e e l l e s s o v e r w h e l m e d and o u t o f c o n t r o l was t o f o c u s on t h e p r e s e n t . T h i s was p a r t i c u l a r l y i m p o r t a n t b e c a u s e t h e r e was so much u n c e r t a i n t y s u r r o u n d i n g t h e w h o l e e x p e r i e n c e . The p a r e n t s t a l k e d a b o u t t a k i n g e a c h d a y , one a t a t i m e , w h i c h e n a b l e d them t o m a i n t a i n a c e r t a i n d e g r e e o f o p t i m i s m and keep f a m i l y l i f e "as n o r m a l as p o s s i b l e . " M: I d o n ' t know, a l o t o f p e o p l e s a y , " y o u ' r e so s t r o n g , y o u ' r e so s t r o n g . " But i t ' s n o t a m a t t e r o f b e i n g s t r o n g — i t ' s j u s t , y o u do what you have to do and you c a n ' t s i t b a c k and c r y b e c a u s e y o u r b aby was b o r n w i t h s o m e t h i n g w r o n g . You j u s t t a k e i t d a y - b y - d a y and y o u do what you h a v e t o do. M: I d o n ' t know, yo u j u s t l i v e d a y - b y - d a y . J u s t g e t t h i s d a r n h e a r t o p e r a t i o n o v e r w i t h and t h a t ' s t h e w o r s t b u t y o u have t o d e f i n i t e l y t a k e i t d a y - b y -day . When t h e s u b j e c t o f t h e c o r r e c t i v e s u r g e r y came up, most p a r e n t s i n d i c a t e d t h a t u n t i l t h e y g o t c l o s e r t o t h e a n t i c i p a t e d d a t e f o r t h i s e v e n t t h e y t r i e d n o t t o t h i n k a b o u t i t . M: I , I j u s t t r y n o t t o t h i n k a b o u t t h e w h o l e t h i n g , y o u know. You know, u n t i l r e a l i t y ' l l r e a l l y s e t i n — y o u know, when i t g e t s c l o s e r t o t h e m i d d l e o f November. I j u s t t r y n o t t o t h i n k a b o u t i t . M: I do t h i n k a b o u t i t . I p u s h i t away. I ' d r a t h e r 106 c o n c e n t r a t e on w h a t ' s h a p p e n i n g now. I d o n ' t want to w o r r y t o o much a b o u t i t u n t i l i t comes up. We've t a l k e d a b o u t i t , o f c o u r s e . I : What a b o u t f o r y o u , Mr. J o n e s ? F: You d o n ' t r e a l l y want t o t h i n k a b o u t i t - - i t w o r r i e s y o u , o f c o u r s e , y e a h . . . M: ... we j u s t have so much f a i t h i n him and t h e s u r g e r y c o m i n g up d o e s n ' t e v e n b o t h e r me. You know, maybe i t w i l l be a d i f f e r e n t s t o r y once t h e t i m e h i t s b u t r i g h t now, y o u know. I : R i g h t now y o u d o n ' t r e a l l y t h i n k a b o u t i t . M: No, n o , I d o n ' t e v e n t h i n k a b o u t i t . I t ' s a few months away. T h i s s t r a t e g y o f f o c u s i n g on t h e p r e s e n t s o m e t i m e s e n a b l e d p a r e n t s t o m a i n t a i n a c e r t a i n d e g r e e o f o p t i m i s m and keep f a m i l y l i f e "as n o r m a l as p o s s i b l e . " T h e r e were t i m e s h o w e v e r , when i t d i d n o t work and t h i s w i l l be e x p l a i n e d u n d e r t h e n e x t c o p i n g s t r a t e g y o f " a n t i c i p a t i n g th e f u t u r e . " A n t i c i p a t i n g t h e F u t u r e The p a r e n t s s o m e t i m e s f o u n d i t n e c e s s a r y t o use t h e o p p o s i t e c o p i n g s t r a t e g y o f a n t i c i p a t i n g t h e f u t u r e . G e n e r a l l y , t h i s s t r a t e g y was e m p l o y e d a t some v e r y s p e c i f i c p o i n t s i n t h e e x p e r i e n c e . These i n c l u d e d : when t h e d i a g n o s i s was f i r s t made, when h o s p i t a l i z a t i o n o f t h e c h i l d was a n t i c i p a t e d and when t h e c h i l d was a c t u a l l y i n h o s p i t a l . By a n t i c i p a t i n g t h e i r c h i l d ' s f u t u r e , t h e p a r e n t s c o u l d p r e p a r e t h e m s e l v e s f o r what l a y a h e a d . T h r o u g h a n t i c i p a t i n g and p r e p a r i n g , t h e y c o u l d f e e l some s e n s e o f c o n t r o l o v e r t h e i r l i v e s and be r e a s s u r e d a b o u t 107 t h e i r a b i l i t y t o meet t h e i r f a m i l y ' s n e e d s i n t h e f a c e o f t h e i r c h i l d ' s i l l n e s s . Two s p e c i f i c t a c t i c s f o r a n t i c i p a t i n g t h e f u t u r e were a p r i m a r y one o f s e e k i n g i n f o r m a t i o n and s e c o n d a r i l y , r e f l e c t i n g on p a s t e x p e r i e n c e s . T h r o u g h o u t t h e e x p e r i e n c e most o f t h e p a r e n t s w a n t e d to be k e p t i n f o r m e d a b o u t t h e i r c h i l d ' s c o n d i t i o n and any p l a n s f o r t r e a t m e n t . T h i s was one t a c t i c f o r a c c u r a t e l y a n t i c i p a t i n g t h e f u t u r e . Not o n l y was i t i m p o r t a n t t h a t t h e h e a l t h c a r e p r o f e s s i o n a l s i m p a r t t h i s k n o w l e d g e t o t h e p a r e n t s as s o o n as i t was a v a i l a b l e b u t t h a t i t be g i v e n i n an e a s i l y u n d e r s t o o d f o r m . S e v e r a l p a r e n t s t a l k e d a b o u t t h e d i f f i c u l t y i n t r y i n g t o u n d e r s t a n d t h e m e d i c a l t e r m s o f t e n u s e d t o e x p l a i n t h e d i a g n o s i s . T h e i r u n d e r s t a n d i n g was e n h a n c e d by c o n c r e t e d r a w i n g s and p i c t u r e s . I : D i d you f i n d i t h a r d t o e x p l a i n t o o t h e r p e o p l e what was wrong w i t h h e r ? F: F o r a c o u p l e o f d a y s , b u t a f t e r a few d a y s o f g o i n g down t o [ t e r t i a r y h o s p i t a l ] and t a l k i n g t o — w e were a b l e t o e x p l a i n i t p r e t t y w e l l a f t e r t h a t . M: Y e a h , he g a v e us a l i t t l e b o o k l e t . F: Drew p i c t u r e s o f h e r h e a r t . M: Y e a h , ' c a u s e t h e y were e x p l a i n i n g i t t o us and i t was r e a l l y c o m p l i c a t e d . A l l we w a n t e d was f o r them t o draw i t a c t u a l l y i n b l a c k and w h i t e and show us what i t was a l l a b o u t . A l l t h e s e t e c h n i c a l t e r m s r e a l l y meant n o t h i n g t o u s . P a r e n t s s o m e t i m e s s o u g h t o u t s p e c i f i c h e a l t h c a r e p r o f e s s i o n a l s t o answer t h e i r q u e s t i o n s . F o r e x a m p l e , one 108 m o t h e r went t o t h e s o c i a l w o r k e r , i n t h e c l i n i c a l n u r s e s p e c i a l i s t ' s a b s e n c e . M: When t h e y s a i d , y o u know, he had t r a n s p o s i t i o n and t h e y s o r t a s a i d , y o u know, t h e g r e a t e r v e s s e l s a r e s w i t c h e d and t h a t — i t ' s v e r y , v e r y h a r d t o u n d e r s t a n d u n t i l I a c t u a l l y saw a p i c t u r e . You know, t h e A m e r i c a n H e a r t A s s o c i a t i o n , t h e i r l i t t l e b o o k l e t t h e r e f o r p a r e n t s w i t h — c o n g e n i t a l h e a r t d e f e c t s . And I saw t h a t and s a i d , "now I u n d e r s t a n d w h a t ' s r e a l l y t h e p r o b l e m ! " I : Names d o n ' t mean a l o t t o t h e l a y p e r s o n . M: No! And t o s a y t h e y ' r e s w i t c h e d . W e l l , w h a t ' s s w i t c h e d ? You know, why c a n ' t t h e y j u s t s o r t a , y o u know, p u t them where t h e y ' r e s u p p o s e d t o b e . The h e a l t h c a r e p r o f e s s i o n a l s a t t h e t e r t i a r y c a r e h o s p i t a l were d e s c r i b e d as b e i n g a p p r o a c h a b l e . H e n c e , t h e p a r e n t s seemed t o have no qu a l m s a b o u t a s k i n g q u e s t i o n s . F: They were v e r y good i n t h a t r e s p e c t , a l l o f them, e s p e c i a l l y t h e d o c t o r . You'd a s k h i m a n y t h i n g and h e ' d , y o u know, t e l l y o u — t h e s p e c i a l i s t . M: A l l t h e d o c t o r s we've d e a l t w i t h a r e r e a l l y good and t h e y ' l l e x p l a i n r e a l l y a n y t h i n g t h a t we w a n t . F: I t p u t s us more a t e a s e t o know e x a c t l y w h a t ' s g o i n g on and w h a t ' s g o i n g t o be d o n e . A l t h o u g h t h e h e a l t h c a r e p r o f e s s i o n a l s were g e n e r a l l y a p p r o a c h a b l e , some f a m i l i e s f e l t t h a t c e r t a i n i n f o r m a t i o n s h o u l d be more r e a d i l y a v a i l a b l e t o a i d them i n a c c u r a t e l y a n t i c i p a t i n g t h e f u t u r e . One s u c h f a m i l y were i n a n o t h e r c o u n t r y when t h e i r c h i l d was b o r n and t h e m o t h e r had some s u g g e s t i o n s t o make, b a s e d on h e r e x p e r i e n c e a t t h e h o s p i t a l i n h e r n a t i v e c o u n t r y . M: And t h a t was one t h i n g I r e a c t e d t o when we came h e r e . I d o n ' t know, maybe t h e y t o o k i t f o r g r a n t e d t h a t we knew a b o u t what was g o i n g o n , b u t 109 t h a t ' s one t h i n g I f e e l h e r e , when we came to [ t e r t i a r y h o s p i t a l ] t h e r e was no i n f o r m a t i o n w h a t s o e v e r o n - - i f t h e r e e x i s t e d , g r o u p s l i k e p a r e n t s g r o u p s l i k e t h a t - - a n d you know, w h a t ' s o u t t h e r e . And no p a m p h l e t s , no n o t h i n g . I mean i n [ n a t i v e c o u n t r y ] , when I came t o t h e h o s p i t a l t h e y were j u s t l i n e d up t h e r e and e ven t h e d o c t o r s handed t h a t o u t . . . I f e l t l i k e I g o t more i n f o r m a t i o n f r o m b o t h t h e n u r s e s and t h e d o c t o r , o f — e s p e c i a l l y where c a n I go f o r h e l p , f o r i d e a s , f o r b o o k s e v e n t o r e a d a b o u t i t . . . I d o n ' t know r e a l l y , what I w o u l d have done i f I d i d n ' t have have a l l t h e s t u f f t o r e a d . I t h i n k I w o u l d be much more u n c e r t a i n — w h a t i s t h i s r e a l l y — w h a t i s g o i n g on h e r e ? T h u s , s e e k i n g i n f o r m a t i o n was a p r i m a r y t a c t i c u s e d by p a r e n t s t o a n t i c i p a t e t h e f u t u r e and r e d u c e u n c e r t a i n t y . Sometimes p a r e n t s p i c k e d up i n f o r m a t i o n j u s t by l i s t e n i n g to e x p l a n a t i o n s b e i n g g i v e n t o o t h e r p a r e n t s . M: I ' d o v e r h e a r d one o f t h e o t h e r — o n e o f t h e n u r s e s a t [ t e r t i a r y h o s p i t a l ] t a l k i n g w i t h a n o t h e r p a r e n t t h a t had a b aby w i t h t h e same k i n d a c o n d i t i o n , s a y i n g t h a t t h e s e b a b i e s d o n ' t g a i n w e i g h t t h a t f a s t . So I knew, and I ' d m e n t i o n e d i t t o t h e d o c t o r and she s a i d , "oh w e l l , I d i d n ' t want t o put t o o much on y o u r s h o u l d e r s . I d i d n ' t t h i n k you knew." But I ' d r a t h e r know. To me i t w a s — I mean on c e yo u f i n d o u t — I f e l t o n c e yo u f i n d o u t t h a t t h e y h a v e a h e a r t p r o b l e m t h e n t h e t h i n g s t h a t go a l o n g w i t h i t , y o u m i g h t as w e l l know--'cause i t ' s n o t g o i n g t o c h a n g e t h e f a c t . B e f o r e t h e b a b y was d i s c h a r g e d f r o m t h e h o s p i t a l most p a r e n t s had d e v e l o p e d a s e t o f e x p e c t a t i o n s a b o u t t h e p o t e n t i a l i m p a c t o f t h e i r b a b y ' s i l l n e s s on f a m i l y l i f e . T h i s v i s i o n o f t h e f u t u r e was b a s e d p r i m a r i l y on t h e i r i n t e r p r e t a t i o n o f i n f o r m a t i o n f r o m h e a l t h c a r e p r o f e s s i o n a l s and o t h e r s o u r c e s , as w e l l as t h e i r i n i t i a l e x p e r i e n c e w i t h t h e i n f a n t . By a n t i c i p a t i n g t h e f u t u r e , p a r e n t s c o u l d p r e p a r e t h e m s e l v e s f o r what l a y a h e a d . F: I t h i n k i n i t i a l l y , when we f i r s t f o u n d o u t and 110 w e r e n ' t r e a l l y a w are o f what was g o i n g t o be t a k i n g p l a c e , we t h o u g h t t h e r e ' d be a b i g c h a n g e . But s i n c e he had h i s f i r s t . . I : What had you s o r t o f e x p e c t e d a t t h a t p o i n t i n t e r m s o f c h a n g e ? F: Um, a l o t more t i m e i n h o s p i t a l s . I t seemed i n i t i a l l y we were s p e n d i n g a l o t o f t i m e i n t h e h o s p i t a l and I t h o u g h t we were g o i n g t o r u n i n t o t h a t a l l t h e t i m e . But s i n c e h i s f i r s t o p e r a t i o n and we've had h i m home, h e ' s no d i f f e r e n t t h a n a n y b o d y e l s e . M: But you know when he was b o r n , a few p e o p l e had made comments, y o u know, some o f t h e n u r s e s and t h a t had s a i d , " o h h h , y o u ' r e gonna be s p e n d i n g a l o t o f t i m e i n h e r e , " o r — s o we t h o u g h t , o h , t h e s e k i d s a r e i n and o u t a l l t h e t i m e . . . I t h i n k we b o t h e x p e c t e d when he was f i r s t b o r n t h a t we were j u s t g o i n g t o have t h i s r e a l l y p a l e , l i k e k i n d o f l a x i d a s i c a l k i n d o f c h i l d t h a t j u s t l a y t h e r e , d i d n ' t have t h e e n e r g y o r y o u know, t h e s t r e n g t h t o do a n y t h i n g , b e c a u s e we'd n e v e r known anyone w i t h — r e a l l y a h e a r t p r o b l e m . F: I t ' s d e f i n i t e l y been d i f f e r e n t t h a n what I t h o u g h t t h e f i r s t c o u p l e o f d a y s . I : What d i d you t h i n k ? F: I t h o u g h t i t was g o i n g t o c h a n g e o u r l i v e s . I : What k i n d s o f t h i n g s d i d y o u t h i n k were g o i n g t o happen? F: Um, I g u e s s what went t h r o u g h my m i n d was t h a t y o u h e a r a b o u t a l o t o f s i c k n e s s e s where i t a l m o s t t a k e s t h e w h o l e t i m e f o r t h e p a r e n t s . You h a v e t o l o o k a f t e r — i t t a k e s much o f t h e i r t i m e . From t h e s e a c c o u n t s , i t i s a p p a r e n t t h a t most f a m i l i e s e n v i s i o n e d t h a t t h e i r c h i l d ' s i l l n e s s w o u l d have more o f an i m p a c t on f a m i l y l i f e t h a n i t e v e n t u a l l y d i d . I t was i m p o r t a n t f o r them t o a n t i c i p a t e t h e f u t u r e so t h e y c o u l d m u s t e r a l l t h e i r r e s o u r c e s t o cope w i t h what l a y a h e a d . I l l When i t t u r n e d o u t b e t t e r t h a n e x p e c t e d , t h e y were t h a n k f u l . The p a r e n t s knew t o e x p e c t d e v e l o p m e n t a l d e l a y s w h i c h h e l p e d them a c c e p t t h e i r c h i l d ' s s o m e t i m e s s l o w e r t h a n n o r m a l p r o g r e s s . M: My d o c t o r has had — t h i s i s h i s t h i r d c a s e . I : Y our p e d i a t r i c i a n . M: My G.P., and he s a i d t h a t she w o u l d be s l o w and p r o b a b l y a f t e r t h e s u r g e r y s h e ' d p r o b a b l y h a v e a s p u r t o f g r o w t h . But t h e y t i r e e a s i l y , so he s a y s i t t a k e s a l o t o f e n e r g y t o r o l l o v e r . M: ... b u t l i k e t h e p e d i a t r i c i a n s a i d he c o u l d t e n d to be a l i t t l e s l o w b u t he w o u l d n ' t n e c e s s a r i l y b e . But he w a s n ' t d o i n g a l o t o f t h i n g s — h e w a s n ' t c r a w l i n g — h e s t i l l won't c r a w l . . . b u t a t l e a s t we were p r e p a r e d t h a t i f he was s l o w t o w a l k and t h a t , t h a t we knew t h a t o k a y t h e r e ' s a r e a s o n f o r i t . P r e p a r a t o r y i n f o r m a t i o n a l l o w e d p a r e n t s t o a n t i c i p a t e t h e i r c h i l d ' s p r o g r e s s and t h u s d i m i n i s h e d t h e i r a n x i e t y . A p a r e n t s u p p o r t g r o u p was c o n s i d e r e d a good s o u r c e o f i n f o r m a t i o n and s u p p o r t f o r one f a m i l y . M: They had t h i s b o o k l e t t h a t t h e y s e n t o u t o n c e a month and you knew what was g o i n g on and t h e y t o l d y ou what p o s s i b i l i t i e s he h a d . . . They had p a r e n t s w r i t e a b o u t t h e i r c h i l d w i t h so and so h e a r t p r o b l e m and t h e y t o l d a l i t t l e b i t a b o u t f a m i l y l i f e . And i t d e f i n i t e l y seemed t o c h a n g e many p e o p l e ' s l i v e s . I : So i n some ways i t was u h , made you more c o n c e r n e d b e c a u s e you t h o u g h t t h e s e t y p e s o f t h i n g s m i g h t happen f o r you t o o . M: Y e s , y e a h , b u t I w a n t e d t o be p r e p a r e d f o r t h e w o r s t . I w a n t e d t o b e c a u s e I d i d n ' t want t o go and l i v e and t h i n k t h a t i t w i l l n e v e r be so bad f o r u s . . . I w a n t e d t o be p r e p a r e d f o r t h e w o r s t so I c o u l d be happy i f i t d i d n ' t h a p p e n . 112 A g a i n , t h e i m p o r t a n c e o f b e i n g p r e p a r e d f o r t h e p o s s i b l y n e g a t i v e i m p l i c a t i o n s o f CHD i s e m p h a s i z e d h e r e . When t h e c h i l d had p a l l i a t i v e s u r g e r y i t was i m p e r a t i v e t h a t t h e p a r e n t s be p r e p a r e d f o r t h e ICU e n v i r o n m e n t . M: B u t t h e y were r e a l l y g o o d , y o u know, e x p l a i n i n g t o us l i k e h e ' s gonna have a l l t h e s e t u b e s and y o u ' r e gonna have t o , y o u know, g e t u s e d t o i t . I : Who e x p l a i n e d t h a t t o you? M: The n u r s e s , b e c a u s e i t — l i k e I s a i d , i t was so s u d d e n t h a t we were i n t h e r e — b u t t h e y were t r y i n g t o t a k e us down t o i n t e n s i v e c a r e t o j u s t have a l o o k a r o u n d b u t t h e y were j u s t t o o b u s y t o have anyone go t h r o u g h . So, we r e a l l y d i d n ' t have a c h a n c e , b u t t h e y j u s t k i n d a k e p t on s a y i n g o v e r and o v e r , l i k e , a l l t h e t u b e s a r e n e c e s s a r y — j u s t k eep on s a y i n g t h a t t o y o u r s e l f when yo u see h i m . So, t h a t w a s n ' t b a d . I'm r e a l l y s q u e a m i s h and I d i d o k a y so I f i g u r e d t h a t was a l l r i g h t . F: We knew what t o a s k . I f t h e r e was a n y t h i n g t h a t w a s n ' t — t h a t someone d i d n ' t a n s w e r um, t o o u r s a t i s f a c t i o n , we c o u l d a s k s o r t o f t h e r i g h t q u e s t i o n s . You know, I t h i n k c o m m u n i c a t i o n s i s t h e r e a l k e y — k e e p i n g p a r e n t s r e a l l y i n f o r m e d o f w h a t ' s h a p p e n i n g . I : You t h i n k i t m i g h t have been d i f f e r e n t i f you h a d n ' t known t h e r i g h t q u e s t i o n s t o a s k . F: Oh y e a h . You know t h a t ICU i s a r e a l f r i g h t e n i n g p l a c e . Maybe t h e f i r s t t i m e somebody goes i n t h e r e , t h e y s h o u l d be t a k e n i n t h e r e and t o l d by someone s p e c i a l t h a t ' s g o t a b a c k g r o u n d , t o l d w h a t ' s g o i n g o n . I : T h a t d i d n ' t happen f o r you? F: W e l l , n o . I knew what a l o t o f t h e s t u f f was b u t you know, t h e y s a i d , " w e l l , i f y o u ' v e g o t any q u e s t i o n s on t h e m a c h i n e s , j u s t s t a r t a s k i n g . " I t a p p e a r s f r o m t h e s e a c c o u n t s t h a t t h e p a r e n t s were n o t c o n s i s t e n t l y p r e p a r e d f o r t h e ICU e n v i r o n m e n t . An a t t e m p t 113 was made t o p r e p a r e t h e f i r s t f a m i l y b u t n o t t h e s e c o n d , p e r h a p s b e c a u s e t h e f a t h e r was an a l l i e d h e a l t h c a r e p r o f e s s i o n a l . R e f l e c t i n g on p a s t e x p e r i e n c e s was a u s e f u l t a c t i c f o r a n t i c i p a t i n g t h e f u t u r e . One e x a m p l e o f t h i s was t h i n k i n g a b o u t t h e i r p r e v i o u s e x p e r i e n c e s i n t h e ICU w h i l e t r y i n g t o a n t i c i p a t e t h e f u t u r e s u r g i c a l e x p e r i e n c e . M: We saw t h e l i t t l e boy a c r o s s f r o m h e r . She was i n one l i t t l e s t a t i o n a t [ t e r t i a r y h o s p i t a l ] and t h e r e was t h i s l i t t l e b o y — h e was a b o u t e i g h t e e n months o l d — a c r o s s f r o m h e r . He j u s t was l y i n g on h i s b a c k and he had t u b e s t h r o u g h him and we t h o u g h t , 'oh God, w h a t ' s t h e m a t t e r w i t h h i m ! 1 and a p p a r e n t l y he had j u s t had c o r r e c t i v e s u r g e r y , so t h a t ' s what we have t o go t h r o u g h . . . . They had him s t r a p p e d to t h e bed b e c a u s e he w a n t e d t o move a r o u n d and t h a t , and he c o u l d n ' t and t h e m o t h e r was t h e r e t r y i n g t o c o m f o r t h i m , and i t was p r e t t y s a d a c t u a l l y . M: I t ' s j u s t t h a t I d o n ' t want him t o h u r t a t a l l . I t h i n k t h a t i t j u s t r e a l l y b o t h e r s me b e c a u s e e v e n t h o u g h he c o u l d n ' t s a y a n y t h i n g i t ' s j u s t a l l t h e t h i n g s t h a t t h e y had t o d o . I t r y t o i m a g i n e , l i k e p e o p l e d o i n g them t o me and i t ' s j u s t s o m e t h i n g — i t ' s n o t s o m e t h i n g I t h i n k a b o u t a l l t h e t i m e o r e v e r y d a y . I t ' s j u s t l i k e s o m e t i m e s i f I'm f a l l i n g a s l e e p , a l l o f a s u d d e n I t h i n k a b o u t i t and y o u know, s o m e t i m e s I ' l l g e t r e a l l y u p s e t . 'Cause I j u s t t h i n k , y o u know, t h e y ' r e g o i n g t o have t o make s u c h a b i g i n c i s i o n and t h a t must be p a i n f u l and a l l t h e t u b e s a g a i n . I t ' s j u s t h a r d to see him l i k e t h i s and you t h i n k why c o u l d n ' t he s t a y l i k e t h i s and j u s t l e a v e h i m a l o n e . And t h e n I t h i n k , ' w e l l n o , t h e y h a v e t o do i t , ' s o , i t ' s h a r d . F o r s e v e r a l f a t h e r s , c o n c e r n s r e v o l v e d more a r o u n d t h e i r c h i l d ' s a c t i v i t y p o t e n t i a l once t h e s u r g e r y was done and n o t so much a r o u n d t h e i m m e d i a t e p o s t - o p e r a t i v e phase as was t h e f o c u s o f most m o t h e r s . 114 I: So, what's i t l i k e f o r you t o know t h a t he has to have some more s u r g e r y ? M: 1 f i n d I t h i n k about i t . I: Do you? F: Yeah, q u i t e a b i t . M: Do you? I d i d n ' t know you d i d ( n e r v o u s l a u g h ) . I: What a s p e c t o f i t do you t h i n k a b o u t ? F: I know o r have a good i d e a o f what's g o i n g to be done. But I t h i n k i t ' s j u s t w o n d e r i n g a f t e r w a r d s — w h a t he's g o i n g to be l i k e a f t e r w a r d s . . . W e l l , t h e c o n c e r n I had was i f he wanted to be i n v o l v e d i n s o m e t h i n g , s a y s p o r t s , b e c a u s e I'm i n v o l v e d i n s p o r t s and I j u s t , y ou know. I f he d i d want to be i n v o l v e d i n t h a t — w o u l d he be a b l e to do i t o r would he have to s t a n d on the s i d e l i n e s . . . . Dr. B. s a i d , s u r e he c o u l d do i t . He m i g h t n o t be the s t a r o f the team or the s t a n d o u t o r be a p r o f e s s i o n a l a t h l e t e but a t l e a s t he can g e t i n t h e r e and do what he wants to do, so t h a t ' s n i c e to h e a r . Once more, the i m p o r t a n c e o f t h e t a c t i c of s e e k i n g i n f o r m a t i o n i n an a t t e m p t t o a c c u r a t e l y v i s u a l i z e the c h i l d ' s f u t u r e came t h r o u g h i n t h i s a c c o u n t . When the s u r g e r y became a r e a l i t y p a r e n t s sought i n f o r m a t i o n from a v a r i e t y o f s o u r c e s . The i n v e s t i g a t o r was a s k e d s u r g e r y - f o c u s e d q u e s t i o n s by s e v e r a l f a m i l i e s . These q u e s t i o n s were e i t h e r d e f e r r e d u n t i l the end o f the i n t e r v i e w s o r r e f e r r e d to a n o t h e r s o u r c e . P l a n n i n g a m e e t i n g w i t h t h e s u r g e o n s ahead of t i m e was one way to e n s u r e t h a t t h e y g o t the i n f o r m a t i o n t h e y needed i n o r d e r to a n t i c i p a t e and p r e p a r e t h e m s e l v e s f o r t h i s e v e n t . F: H o p e f u l l y w e ' l l be a b l e to g e t the s u r g e o n s t o s i t down i n a l i t t l e b i t o f a m e e t i n g b e f o r e the s u r g e r y , maybe n e x t week o r the week a f t e r . 115 M: .... B e f o r e — i n s t e a d o f , y o u know, e i t h e r t h e day b e f o r e when we're so u p t i g h t and a h , e v e r y b o d y ' l l be more o r l e s s a h - - w e ' l l have t h e t i m e t o s i t down and a h , a l i t t l e b i t more r e l a x e d . I n s t e a d o f h a v i n g t h e p r e s s u r e o f , y o u k n o w — h o w t h e y come a r o u n d t h e day b e f o r e and a s k you a l l t h o s e q u e s t i o n s . You know, t h e y ' v e a s k e d them t o you a b o u t a month b e f o r e . They go t h r o u g h i t a l l o v e r a g a i n and a h , t h i s w a y — y o u d o n ' t a s k what you r e a l l y want t o a s k b e c a u s e y o u ' r e p r e s s u r e d f o r t i m e , y o u know. And i t ' s n o t i n t h e most p r i v a t e o f p l a c e s e i t h e r . . . F: B e c a u s e , y o u know, I w a n t — I want some f a i r l y good a n s w e r s . I wanna know where and how and what e x a c t l y t h e y ' r e gonna do and t h i n g s l i k e t h i s . To s u m m a r i z e , t h e o v e r a l l c o p i n g s t r a t e g y o f " a n t i c i p a t i n g t h e f u t u r e " i n c l u d e d t h e t a c t i c s o f , s e e k i n g i n f o r m a t i o n and r e f l e c t i n g on p a s t e x p e r i e n c e s . G o a l s i m p l i c i t i n t h e a c c o u n t s and r e l a t e d t o t h i s c o p i n g s t r a t e g y w e r e , r e d u c i n g u n c e r t a i n t y and p r e p a r i n g f o r t h e f u t u r e • B e i n g H o p e f u l Hope, as a c o p i n g s t r a t e g y , was e m p l o y e d by a l l o f t h e p a r e n t s t o one d e g r e e o r a n o t h e r . I n some c o n v e r s a t i o n s i t was s p o k e n o f e x p l i c i t l y w h i l e i n o t h e r s i t was more i m p l i c i t . By way o f d e f i n i t i o n , " b e i n g h o p e f u l " means t o l o n g f o r w i t h t h e e x p e c t a t i o n o f f u l f i l l m e n t . Sometimes t h e p a r e n t s hoped f o r v e r y s p e c i f i c t h i n g s w h i l e a t o t h e r t i m e s t h e hope was more g e n e r a l , r e l a t i n g f o r e x a m p l e , t o a happy f u t u r e f o r t h e w h o l e f a m i l y . " B e i n g h o p e f u l " was an i m p o r t a n t s t r a t e g y i n a t t a i n m e n t o f t h e g o a l o f m a i n t a i n i n g a p o s i t i v e o u t l o o k . The p a r e n t s were a b l e t o s u s t a i n hope as l o n g as t h e y b e l i e v e d t h e y had g r o u n d s f o r h o p e . They f o u n d g r o u n d s f o r 116 hope i n : r e a s s u r a n c e f r o m r e l a t i v e s , f r i e n d s and h e a l t h c a r e p r o f e s s i o n a l s ; f i r s t hand e x p e r i e n c e w i t h o t h e r c h i l d r e n ; c h i l d ' s p r o g r e s s t o d a t e b e i n g b e t t e r t h a n e x p e c t e d ; c o m p a r i s o n s t o o t h e r s who a r e w o r s e o f f ; t h i n k i n g a b o u t i m p r o v e m e n t s i n c h i l d ' s c o n d i t i o n a f t e r s u r g e r y ; and p o s t u l a t i n g a p h i l o s o p h i c a l o v e r a l l m e a n i n g f o r t h e e x p e r i e n c e . A l t h o u g h a l l o f t h e p a r e n t s e m p l o y e d t h e c o p i n g s t r a t e g y o f " b e i n g h o p e f u l , " t h e y u s e d v a r i o u s c o m b i n a t i o n s o f t h e above l i s t e d g r o u n d s f o r h o p e . R e l a t i v e s and f r i e n d s were o f t e n i n s t r u m e n t a l i n r e a s s u r i n g t h e p a r e n t s a b o u t t h e i r c h i l d ' s f u t u r e . As a r e s u l t , t h e p a r e n t s were a b l e t o be h o p e f u l and t h u s m a i n t a i n a somewhat o p t i m i s t i c o u t l o o k i n t h e f a c e o f t h e i r c h i l d ' s c h r o n i c i l l n e s s . F: L i k e I ' d n e v e r r e a l l y h e a r d t o o much a b o u t i t u n t i l t h i s l i t t l e guy came a l o n g . Then a l l o f a s u d d e n e v e r y o n e was s a y i n g , " o h , I ' v e g o t a b r o t h e r o r a c o u s i n o r somebody who had a h o l e i n t h e h e a r t . T h a t ' s no b i g p r o b l e m — y o u d o n ' t have t o w o r r y a b o u t t h a t — h e ' l l be o k a y . " M: Once t h e y h e a r d a b o u t Susan a l m o s t e v e r y o n e has h e a r d and knows some o t h e r p e o p l e who have a baby w i t h s i m i l a r k i n d s o f p r o b l e m s and how good t h e c a r e i s a t [ t e r t i a r y h o s p i t a l ] . So e v e r y o n e ' s a l w a y s t e l l i n g you t h a t t h e r e ' s g o i n g t o be no p r o b l e m s and e v e r y t h i n g ' s g o i n g t o be o k a y . I : Do you f i n d t h a t e n c o u r a g i n g ? M: Y e a h , l i k e you d o n ' t know i f maybe t h e y ' r e j u s t s a y i n g i t t o make you f e e l b e t t e r b u t you know i t ' s n i c e t o h e a r i t a n y w a y s . F r i e n d s and r e l a t i v e s c o n t i n u e d t o p r o v i d e r e a s s u r a n c e t o t h e f a m i l i e s as t h e s u r g e r y became more o f a r e a l i t y . 117 F: I ' v e g o t a f r i e n d o f m i n e , p l a y s on t h e same b a l l team as I do. H i s mum's a head n u r s e a t [ c o m m u n i t y h o s p i t a l ] so she knows a b o u t t h e p r o b l e m and she was t e l l i n g him and he t o l d m e — t h e y know some p e o p l e p e r s o n a l l y t h a t have t h e same p r o b l e m and t h e k i d i s r a m b u n c t i o u s as any o t h e r k i d , s o . . I : T h i s c h i l d had h i s s u r g e r y ? F: Y e a h , i t ' s a l r e a d y - - y e a h , I t h i n k t h e c h i l d i s a b o u t t h r e e o r f o u r now. He had i t way b a c k when, as w e l l . You know, t h e y s a i d i t ' s s e r i o u s b u t once i t ' s done and i t ' s done c o r r e c t l y , i t ' s o v e r , f i n i s h e d . T h e r e ' s no more w o r r i e s — j u s t go a b o u t i t and w a t c h 'em grow. The p a r e n t s were a l s o e n c o u r a g e d by o p t i m i s t i c r e p o r t s f r o m t h e p h y s i c i a n s . F: The d o c t o r s t h i n k h e ' s d o i n g g r e a t . D r . D. t h i n k s h e ' s d o i n g f a n t a s t i c . M: She's so p l e a s e d , y e a h . M: She's g r o w i n g r e a l l y w e l l . The d o c t o r s a r e happy w i t h h e r g r o w t h . A l l o f t h e p a r e n t s had some e x p o s u r e t o t h e h o s p i t a l p r i o r t o t h e i r c h i l d ' s c o r r e c t i v e h e a r t s u r g e r y . Sometimes f i r s t hand e x p e r i e n c e w i t h o t h e r c h i l d r e n h e l p e d them t o f e e l h o p e f u l . M: W e l l a l s o , t h e r e was a l o t o f k i d s who'd had open h e a r t s u r g e r y so we k i n d o f saw what i t ' s g o i n g t o be l i k e f o r us t h e n e x t t i m e . And u h , y o u know, we see a l l t h e s e l i t t l e k i d s t h a t j u s t had open h e a r t s u r g e r y a week b e f o r e and t h e y ' r e up r u n n i n g a r o u n d so t h a t made us f e e l b e t t e r i n a way b e c a u s e we know we have t o go t h r o u g h t h a t a g a i n . An i m p o r t a n t r e a s o n t o hope was b a s e d i n t h e c h i l d ' s p r o g r e s s t o d a t e b e i n g b e t t e r t h a n e x p e c t e d . M: We've been r e a l l y l u c k y b e c a u s e he has been r e a l l y h e a l t h y o t h e r w i s e and he's d o i n g w e l l . You know, he's g o i n g l o n g e r w i t h o u t t h e s u r g e r y t h a n t h e y 118 t h o u g h t so e v e r y t h i n g ' s g o i n g w e l l and i t l o o k s good f o r h i m . M: When he was b o r n — a few da y s l a t e r he had an o p e r a t i o n . He s u r v i v e d i t j u s t i n c r e d i b l y . You know i t was a r o u g h s t a r t and he's d o i n g good now. You know, and we j u s t h ave so much f a i t h i n him and t h e s u r g e r y c o m i n g up d o e s n ' t e v e n b o t h e r me. I t was o r i g i n a l l y p r e d i c t e d t h a t one c h i l d w o u l d need a s h u n t a t t h r e e months o f a g e . When t h a t t i m e had p a s s e d , t h e p a r e n t s f e l t t h e y had g r o u n d s t o hope t h a t p e r h a p s h e r c o n d i t i o n w o u l d r e m a i n s t a b l e enough t o n o t r e q u i r e a s h u n t a t a l l . M: L a s t t i m e we went t o see t h e d o c t o r and he s a i d , " w e l l , w e're g o i n g t o b r i n g h e r i n . " I t was j u s t b e f o r e C h r i s t m a s we saw h i m . He s a i d i t w i l l p r o b a b l y be w i t h i n t h e n e x t few weeks t h e n . When he s a i d t h a t , I k i n d o f — y o u ' r e h o p i n g t h a t maybe he's g o i n g t o s a y , " w e l l , I d o n ' t t h i n k s h e ' s g o i n g t o need i t , e v e r y t h i n g ' s f i n e " b u t . . . I n t h i s c a s e t h e g r o u n d s f o r hope was n o t v e r y r e a l i s t i c w h i c h l e d t o d i s a p p o i n t m e n t when t h e p a r e n t s f o u n d o ut t h a t t h e i r c h i l d w o u l d i n f a c t need s u r g e r y . Most p a r e n t s compared t h e i r s i t u a t i o n t o o t h e r s whom t h e y c o n s i d e r e d t o be wo r s e o f f and i n t h i s way m i n i m i z e d t h e s e r i o u s n e s s o f t h e i r s i t u a t i o n . T h i s t a c t i c o f m i n i m i z i n g e n a b l e d them t o have more hope f o r t h e i r own c h i l d . H a v i n g t h e i r c h i l d r e n i n t h e h o s p i t a l o f t e n made p a r e n t s more aware o f t h e p l i g h t o f o t h e r f a m i l i e s . I : So was she i n ICU t h e w h o l e t i m e ? M: J u s t f o r t h r e e d a y s . They j u s t were w a t c h i n g h e r b a s i c a l l y . Y e a h , we s a w — o p e n s y o u r e y e s t o some o f t h e k i d s down t h e r e . You a l w a y s t h i n k t h a t y o u ' v e g o t p r o b l e m s and t h e r e ' s a l w a y s p e o p l e t h a t a r e a l o t w o r s e o f f . 119 F: I g u e s s a l l and a l l w e ' r e — w e ' v e been p r e t t y l u c k y . He c o u l d ' v e had o t h e r p r o b l e m s — a l o t o f o t h e r p r o b l e m s . M: ... g o i n g by t h e a h , ICN, p r e m a t u r e b a b i e s s c a r e me so much, y o u know. And I s a i d , y o u know, f o r s o m e t h i n g t o happen l i k e t h a t t o a p r e m a t u r e baby - - I mean, I mean, t h e r e ' s n o t h i n g t h e r e t o s t a r t o f f w i t h , y o u know. So, i t w a s — i t made me f e e l b e t t e r t h a t he was s u c h a good w e i g h t , and t h a t he had t h a t w e i g h t b e h i n d h i m . From t h i s t y p e o f c o m p a r i s o n , t h e y were a b l e t o f e e l h o p e f u l a b o u t t h e i r f a m i l y ' s e x p e r i e n c e . Even t h e f a t h e r whose c h i l d had Down's syndrome and H i r s c h s p r u n g ' s d i s e a s e on t o p o f t h e h e a r t d e f e c t , was a b l e t o f i n d a s i t u a t i o n w h i c h he t h o u g h t w o u l d be w o r s e . F: I t c o u l d be w o r s e . He has some p r o b l e m s , s u r e — b u t you know, I s e e n a l i t t l e boy i n t h e N o r t h S h o r e News, on t h e c o v e r o f t h e N o r t h S h o r e News — w i t h h i s mum—who was t h r e e o r f o u r y e a r s o l d , who was b l i n d . I t h i n k t h a t i s a l i t t l e — I w o u l d r a t h e r see t h e p r o b l e m s he has t h a n a l i t t l e baby who i s b l i n d . At l e a s t h e ' l l see and he knows what he w a n t s — i t ' s a l o t l e s s . You c a n i m a g i n e a l i t t l e b l i n d — y o u c a n i m a g i n e a l w a y s h a v i n g t h e baby i n y o u r h a n d — a l w a y s h a v i n g t h e baby by t h e hand- I t ' s a l o t o f w o r k. I : So y o u ' v e t h o u g h t a b o u t how t h i n g s c o u l d be w o r s e . M: Oh y e a h , d e f i n i t e l y c o u l d be w o r s e . F: C o u l d be w o r s e — c o u l d be a l o t w o r s e . You know, he has h i s h a nds and h i s f e e t and he c a n see and h e a r . P a r e n t s hoped t h a t t h e i r c h i l d ' s l i f e and c o n s e q u e n t l y t h e i r f a m i l y ' s l i f e w o u l d i m p r o v e a f t e r s u r g e r y . T h i n k i n g a b o u t t h i s p o s i t i v e f u t u r e s o m e t i m e s h e l p e d them cope w i t h t h e t r i a l s o f t h e p r e s e n t . M: Keep s a y i n g t h a t when h e ' s — i t ' s a l l done and o v e r w i t h , t h i n g s ' l l g e t b a c k t o n o r m a l and you 120 know, h e ' l l p r o b a b l y s t a r t s l e e p i n g t h r o u g h t h e n i g h t b e c a u s e h e ' l l be f e e d i n g p r o p e r l y . The s u r g e r y t h e r e f o r e r e p r e s e n t e d a g r o u n d s f o r h o p e . M: W e l l we're h o p i n g - - h e s a i d w e ' l l n o t i c e q u i t e a c h a n g e i n h e r c o l o u r and t h a t e s p e c i a l l y so we j u s t have t o t h i n k a b o u t t h a t . A p h i l o s o p h i c a l o v e r a l l m e a n i n g f o r t h e e x p e r i e n c e was a r t i c u l a t e d by two f a m i l i e s . By p o s t u l a t i n g t h a t t h e e x p e r i e n c e w o u l d have some o v e r a l l p o s i t i v e r e p e r c u s s i o n s f o r t h e i r f a m i l i e s , t h e y were a b l e t o r e m a i n h o p e f u l a b o u t t h e i r f a m i l i e s ' f u t u r e s . One f a m i l y had an i n f a n t who was q u i t e s y m p t o m a t i c and a l s o t h e y o u n g e s t , a t f o u r months o f a g e , t o have a M u s t a r d p r o c e d u r e a t t h e t e r t i a r y h o s p i t a l . T h i s i s how t h e y v i e w e d i t . F: . . . I t h i n k t h a t o nce we come o u t o f t h e o t h e r end o f i t w e ' l l be a l o t , y o u know, a l o t s t r o n g e r f o r i t , y o u know. . . I : Can you t e l l me a l i t t l e b i t more a b o u t what you were t h i n k i n g of t h e r e ? F: W e l l , j u s t t h a t , a h , how i s a n y t h i n g e v e r g o i n g t o w o r r y us a g a i n . You know, I mean what c o u l d be w o r s e t h a n l o s i n g one o f y o u r c h i l d r e n o r you know, h a v i n g t h a t t h r e a t h a n g i n g o v e r y o u r h e a d , w i t h t h e e x c e p t i o n o f l o s i n g e a c h o t h e r o r y o u r own l i f e o r w h a t e v e r . Um, I u s e d t o t h i n k t h a t money m a t t e r s , t h i n g s t h a t , l i k e a l o t o f p e o p l e t h i n k a r e r e a l l y i m p o r t a n t . God, i f you l o s e y o u r j o b , what a r e y o u g o i n g t o d o ? ! W e l l y o u know, a f t e r you go t h r o u g h s o m e t h i n g l i k e t h i s , b i g d e a l . E v e r y b o d y ' s h e r e — w e ' r e a l l f i n e . You know, what more c o u l d w o r r y y o u , and t h a t ' s e s s e n t i a l l y what I meant was t h e k i n d o f s t r e n g t h you g a i n f r o m c o p i n g w i t h s o m e t h i n g l i k e t h i s - -no m a t t e r how i t a f f e c t s you a t t h e t i m e , I t h i n k i s i m m e a s u r a b l e . You r e a l l y come o u t o f i t w i t h a w h o l e d i f f e r e n t - - I know I l o o k a t a l o t o f t h i n g s d i f f e r e n t l y . I : So, i t ' s s o r t o f c h a n g e d y o u r v i e w o f l i f e i n a 121 way. F: Yup , yup . I t h i n k a h - - n o t c h a n g e d a l o t — t h e way I t h i n k o f a l o t o f t h i n g s . I s t i l l t h i n k t h i n g s a r e i m p o r t a n t , l i k e p a y i n g b i l l s and s t u f f l i k e t h i s b u t I d o n ' t a t t a c h t h e same p r i o r i t i e s t o them as I d i d , y o u know, b e f o r e t h i s h a p p e n e d . I : What a b o u t f o r you ( t o m o t h e r ) — d o you f e e l s i m i l a r l y ? M: Y e a h . I t h i n k w e ' l l p r o b a b l y be c l o s e r as a f a m i l y t o o b e c a u s e we've had t o p u l l t o g e t h e r f o r th e l a s t f o u r months and you know, e v e n t h r o u g h t h e t h r e e o r you know, how many weeks he i s i n t h e h o s p i t a l . I t h i n k w e ' l l be a h — I mean we were c l o s e and we were a l w a y s c l o s e t o o u r f a m i l y b a c k home b u t I t h i n k w e ' l l j u s t be even t h a t much c l o s e r • I : Y e a h , b e c a u s e y o u ' v e gone t h r o u g h a h a r d t i m e t o g e t h e r . F: Y e a h , I g u e s s t h a t ' s a good way o f p u t t i n g i t . The s e c o n d c o u p l e made a s i m i l a r comment a b o u t t h e c h i l d ' s i l l n e s s b r i n g i n g them c l o s e r as a f a m i l y . They had a baby w i t h Down's s y n d r o m e , H i r s c h s p r u n g ' s d i s e a s e and an AV c a n a l h e a r t d e f e c t , who s p e n t t h e f i r s t t h r e e months o f h i s l i f e i n t h e h o s p i t a l . M: I t p u t us c l o s e r t o g e t h e r . I t b r o u g h t t h e b e s t o u t o f t h e b o t h o f u s . I : I s t h a t r i g h t . M: D e f i n i t e l y . I : S t r e n g t h e n e d you as a f a m i l y ? M: I t s u r e d i d . I t s u r e d i d . You have y o u r downs f o r a w h i l e b u t i t ' s a m a z i n g how y o u do come t o g e t h e r i n a c r i s i s l i k e t h a t . T h i s m o t h e r a l s o f o u n d m e a n i n g i n h e r f a m i l y h a v i n g an i n f a n t w i t h Down's s y n d r o m e . M: ...And um, I u s e d t o wonder why Down's syndrome c h i l d r e n , p e o p l e , were b o r n . The more e v e r y d a y 122 goes b y , I t h i n k g o s h , t h e y ' r e g i v e n t o you f o r a r e a s o n , d e f i n i t e l y f o r a r e a s o n . He's j u s t one h e c k o f a happy l i t t l e b o y - - h e ' s j u s t i n c r e d i b l e , j u s t i n c r e d i b l e . These were t h e two f a m i l i e s whose l i v e s were p r o b a b l y t h e most d i s r u p t e d by t h e i n f a n t s ' i l l n e s s e s . P e r h a p s t h e y had a g r e a t e r need t h a n t h e o t h e r s t o l o o k f o r some p o s i t i v e m e a n i n g i n an o t h e r w i s e t r y i n g e x p e r i e n c e . When a few o t h e r f a m i l i e s were a s k e d i f t h e y t h o u g h t t h e e x p e r i e n c e had b r o u g h t them c l o s e r t o g e t h e r o r c h a n g e d t h e i r o u t l o o k on l i f e i n any way, i t was o b v i o u s t h a t t h e y had n o t g i v e n t h e m a t t e r any t h o u g h t . The m a j o r g o a l o f b e i n g h o p e f u l was t o m a i n t a i n a c e r t a i n d e g r e e o f o p t i m i s m t h r o u g h t h e e x p e r i e n c e . A l l t h e p a r e n t s f o u n d g r o u n d s f o r h o p e , a l t h o u g h some o f t h e g r o u n d s seemed a b i t s h a k y and u n r e a l i s t i c . M i n i m i z i n g was one t a c t i c t h a t p a r e n t s u s e d t o h e l p them p e r c e i v e t h a t t h e y had g r o u n d s t o h ope. To s u m m a r i z e t h e n , t h e s e v e n c o p i n g s t r a t e g i e s w h i c h have been d e s c r i b e d e n a b l e d p a r e n t s t o a t t a i n , a t l e a s t i n p a r t , t h e g o a l s r e l a t e d t o t h e t r a n s i t i o n p e r i o d u n d e r s t u d y h e r e . A l t h o u g h a l l o f t h e p a r e n t s u s e d a l l o f t h e s t r a t e g i e s , some u s e d c e r t a i n o nes more t h a n o t h e r s . F o r e x a m p l e , a c o u p l e o f t h e f a m i l i e s t a l k e d a b o u t t h e i m p o r t a n c e o f " b e i n g h o p e f u l , " " f o c u s i n g on t h e p r e s e n t , " " n o r m a l i z i n g , " " t r u s t i n g h e a l t h c a r e p r o f e s s i o n a l s , " and " s e e k i n g s u p p o r t " so as t o m a i n t a i n an o p t i m i s t i c o u t l o o k . S e v e r a l o f t h e o t h e r s were more i n t e r e s t e d i n " a n t i c i p a t i n g t h e f u t u r e , " i n o r d e r t o r e d u c e u n c e r t a i n t y and p r e p a r e f o r 123 t h e f u t u r e . A l s o , t h e i m p o r t a n c e o f c e r t a i n s t r a t e g i e s became c l e a r d u r i n g s p e c i f i c f a c e t s o f t h e e x p e r i e n c e . The f i n a l s e c t i o n o f t h i s c h a p t e r w i l l be a b r i e f l o o k a t t h e p a r e n t s ' o v e r a l l i m p r e s s i o n s o f t h e e x p e r i e n c e . T h i s o v e r v i e w w i l l h e l p t o c l a r i f y t h e m e a n i n g t h a t p a r e n t s g a ve t o t h e e x p e r i e n c e as a w h o l e as compared t o t h e m e a n i n g g i v e n t o t h e s e p a r a t e f a c e t s . O v e r a l l I m p r e s s i o n o f E x p e r i e n c e A l l o f t h e f a m i l i e s made s t a t e m e n t s a b o u t t h e i r o v e r a l l i m p r e s s i o n s o f t h e e x p e r i e n c e . These s t a t e m e n t s were o f t e n made i n o p e n i n g o r c l o s i n g t h e d i s c u s s i o n . I t i s i n t e r e s t i n g t o c o n s i d e r t h e s e s t a t e m e n t s i n l i g h t o f t h e s p e c i f i c s o f t h e e x p e r i e n c e as d e s c r i b e d by t h e p a r e n t s . M: I d o n ' t know what o t h e r b a b i e s a r e l i k e t h a t have t h i s c o n d i t i o n b u t I j u s t t h i n k t h a t we've been r e a l l y l u c k y , compared t o what we t h o u g h t t h i n g s were g o i n g t o be l i k e , t h e y ' r e w o n d e r f u l l i k e we c o u l d n ' t a s k f o r a n y t h i n g b e t t e r . . . . You know t h e t h o u g h t o f h a v i n g o t h e r k i d s and t h a t , i t h a s n ' t c h a n g e d f o r u s . L i k e , we w o u l d n ' t be s c a r e d t o have a n o t h e r b a b y . . . He's d o i n g w e l l , y o u know. He's g o i n g l o n g e r w i t h o u t t h e s u r g e r y t h a n t h e y t h o u g h t , so e v e r y t h i n g ' s g o i n g w e l l and i t l o o k s good f o r h i m . A l t h o u g h t h i s i s a v e r y p o s i t i v e s t a t e m e n t , t h i s c o u p l e had many e x a m p l e s o f s t r e s s f u l a s p e c t s o f t h e i r e x p e r i e n c e . P e r h a p s b e c a u s e t h e y e x p e c t e d w o r s e , t h e y c o u l d v i e w t h e e x p e r i e n c e i n a p o s i t i v e l i g h t . A l s o , a t t h e t i m e o f t h i s i n t e r v i e w , t h e i r baby had n o t been h o s p i t a l i z e d f o r e i g h t months and was d o i n g w e l l . As a r e s u l t , t h e i r c u r r e n t s i t u a t i o n may have a l s o a f f e c t e d t h e i r o v e r a l l i m p r e s s i o n . 124 A n o t h e r c o u p l e v i e w e d t h e i r e x p e r i e n c e i n a more n e g a t i v e manner. The f a t h e r summed i t up t h i s way. F: I t ' s b een an a l l a r o u n d t r y i n g e x p e r i e n c e r e a l l y and I g u e s s now t h a t t h i n g s a r e c o m i n g t o a head a g a i n , t h a t we're s t a r t i n g t o show s t r e s s and s t r a i n a g a i n , more t h a n we were t h r e e weeks a g o . H i s w i f e showed h e r a g r e e m e n t when she s t a t e d : M: I t ' s v e r y t r y i n g , y o u know, i t ' s v e r y s t r e s s f u l . . . The f a t h e r i s r e f e r r i n g t o t h e i r k n o w l e d g e t h a t t h e c o r r e c t i v e s u r g e r y w o u l d be i n t h r e e weeks t i m e , when he s a y s , " t h i n g s a r e c o m i n g t o a head a g a i n . " T h i s f a c t , c o u p l e d w i t h a s y m p t o m a t i c i n f a n t r e q u i r i n g a l o t o f t i m e and e n e r g y , may h a v e i n f l u e n c e d t h i s f a m i l y ' s i m p r e s s i o n . The p a r e n t s o f one c h i l d seemed t o d i f f e r i n t h e i r o v e r a l l i m p r e s s i o n s o f t h e e x p e r i e n c e . F: I t ' s been way b e t t e r t h a n I t h o u g h t i t w o u l d be. I was e x p e c t i n g h e r t o be a l o t w o r s e b u t s h e ' s been g r e a t . M: A l o t o f p e o p l e have a s k e d us i f we'd want t o h ave anymore c h i l d r e n and I — i t s o r t o f s c a r e s y o u , i n a way, t o t h i n k t h i s c o u l d happen a g a i n . I mean t h e c h a n c e s — t h e y ' v e a l r e a d y t o l d us i t w o u l d p r o b a b l y be v e r y v e r y s l i m t h a t i t c o u l d happen a g a i n b u t i t ' s a l w a y s i n t h e b a c k o f y o u r m ind t o o . I t i s a c t u a l l y - - I w o u l d n ' t want t o go t h r o u g h t h i s a g a i n . P e r h a p s t h e m o t h e r ' s more n e g a t i v e v i e w c o u l d be a t t r i b u t e d t o t h e f a c t t h a t she i s t h e p r i m a r y c a r e g i v e r and w o u l d have t o p h y s i c a l l y i n v e s t more i n a f u t u r e p r e g n a n c y t h a n t h e f a t h e r . I n t r y i n g t o c l a r i f y , a t t h e s e c o n d i n t e r v i e w , w h e t h e r i n f a c t t h e f a t h e r had s i m i l a r f e e l i n g s a b o u t a n o t h e r p r e g n a n c y , i t was d i s c o v e r e d t h a t t h e m o t h e r was p r e g n a n t . T h i s i s what t h e y had t o s a y . 125 M: I t was q u i t e a s h o c k a c t u a l l y . . . a t f i r s t I d i d n ' t know w h e t h e r I was happy o r n o t . I f I had t o go t h r o u g h t h a t a g a i n i t w o u l d be t e r r i b l e . F: I t t o o k a l o n g t i m e f o r Donna t o g e t p r e g n a n t t h e f i r s t t i m e so . . M: We t h o u g h t i t w i l l t a k e a l o n g t i m e a g a i n . S u r p r i s e ! F: J u s t i n c a s e s o m e t h i n g . M: We're f e e l i n g a l o t b e t t e r a b o u t i t now. I t a l k e d to a c o u p l e o f d o c t o r s and t h e y s a i d t h a t t h e y ' v e o n l y e v e r h e a r d o f i t h a p p e n i n g , y o u know f o r t h e s e c o n d t i m e — o n c e , I t h i n k . And um, t h a t i t was p r o b a b l y a f r e a k t h i n g and I'm j u s t n o t g o i n g t o l e t i t , y o u k n o w — w o r r y a b o u t i t f u l l t i m e . . . A g a i n , t h e f a t h e r had v e r y l i t t l e comment to make b u t t h e m o t h e r d i d r e f e r t o "we" as t h o u g h h e r h u s b a n d f e l t t h e same way she d i d . I t i s d i f f i c u l t t o know w h e t h e r i n f a c t t h e i r o v e r a l l i m p r e s s i o n s were c o n t r a d i c t o r y . However, t h e f a t h e r g e n e r a l l y s p o k e a b o u t t h e e x p e r i e n c e i n a more p o s i t i v e manner t h e n h i s w i f e . She r e f e r r e d s e v e r a l t i m e s t o f e e l i n g d e p r e s s e d a b o u t t h e w h o l e e x p e r i e n c e . Two m o t h e r s were p a r t i c u l a r l y p o s i t i v e a b o u t t h e i r e x p e r i e n c e . M: I f e e l r e a l l y f o r t u n a t e , t o be h o n e s t , I do. I t h i n k — w e have a c h i l d w i t h a h e a r t p r o b l e m — I d o n ' t f e e l i t as a p r o b l e m . I f e e l as i f he w o u l d have p r o b l e m s w i t h c o l o u r — l i k e c o l o u r b l i n d , y o u know. I : I t h a s n ' t been a b i g d e a l . M: No, n o t a t a l l . T h i s m o t h e r had a two and o n e - h a l f y e a r o l d who had one h e a r t c a t h e t e r i z a t i o n a t f i v e months o f age and no s u r g e r y t o d a t e . He had few symptoms and had been v e r y a c t i v e . B e c a u s e t h i s m o t h e r had s o u g h t i n f o r m a t i o n a b o u t h e r 126 c h i l d ' s c o n d i t i o n , she was q u i t e aware o f t h e w o r s t s c e n a r i o s , w h i c h may ha v e a l s o i n f l u e n c e d h e r o v e r a l l i m p r e s s i o n . A n o t h e r m o t h e r had t h i s t o s a y . M: What i t ' s been l i k e — i t ' s l i k e he d o e s n ' t have a h e a r t c o n d i t i o n . . . . T h a t ' s what i t f e e l s l i k e . L i k e , he t a k e s h i s m e d i c i n e — t w o d i f f e r e n t t y p e s o f m e d i c i n e s , t w i c e a d a y , i n t h e m o r n i n g and a t n i g h t - - a n d t h a t ' s b a s i c a l l y t h e o n l y t h i n g t h a t y o u ' r e d e a l i n g w i t h . O t h e r t h a n you n o t i c e he g e t s t u c k e r e d o u t much more t h a n a n o r m a l c h i l d h i s age w o u l d . And o t h e r t h a n t h a t you w o u l d n ' t e v e n n o t i c e t h a t t h e h e a r t c o n d i t i o n was t h e r e . I n t h i s c a s e , t h e baby had o n l y been home two weeks a f t e r h a v i n g s p e n t t h r e e months i n t h e h o s p i t a l . The p a r e n t s were v e r y g l a d t o have him home and were f e e l i n g o p t i m i s t i c a t t h e t i m e o f t h e i n t e r v i e w . The baby a l s o had Down's syndrome and t h e m o t h e r ' s m a j o r c o n c e r n a t t h i s p o i n t was h i s p o o r m u s c l e t o n e , n o t h i s h e a r t c o n d i t i o n . From t h e s e e x a m p l e s , i t becomes a p p a r e n t t h a t t h e r e a r e a m u l t i t u d e o f f a c t o r s w h i c h may i n f l u e n c e a p a r e n t ' s o v e r a l l i m p r e s s i o n o f t h e e x p e r i e n c e . A l t h o u g h many p a r e n t s had a p o s i t i v e o v e r a l l i m p r e s s i o n , t h i s d i d n o t mean t h a t t h e r e were no d i f f i c u l t t i m e s e n c o u n t e r e d . I n f a c t , t h e y a l l r e c o u n t e d s t r e s s f u l a s p e c t s o f t h e e x p e r i e n c e . T h e r e seemed t o be a m u l t i t u d e o f s i t u a t i o n a l f a c t o r s w h i c h i n f l u e n c e d a p a r e n t ' s o v e r a l l i m p r e s s i o n o f t h e e x p e r i e n c e a t any g i v e n t i m e . Some o f t h e s e w e r e : i n i t i a l e x p e c t a t i o n s , t i m i n g o f t h e i n t e r v i e w i n r e s p e c t t o c h i l d ' s c u r r e n t c o n d i t i o n and h o s p i t a l i z a t i o n s , k n o w l e d g e o f f u t u r e e v e n t s , g e n e r a l p h i l o s o p h y o f l i f e , o t h e r c o n c e r n s and e x p e r i e n c e t o d a t e . A l s o , i t was a p p a r e n t 127 t h a t t h e o v e r a l l I m p r e s s i o n was n e g a t i v e when f a m i l y l i f e was p e r c e i v e d t o have been s e v e r e l y d i s r u p t e d o v e r t h e l o n g t e r m . I t i s a l s o i m p o r t a n t t o n o t e t h a t a m o t h e r / f a t h e r dyad may n o t t o t a l l y a g r e e on t h e i m p a c t o f t h e e x p e r i e n c e on f a m i l y l i f e . The s i t u a t i o n i s c o m p l e x and t h e o v e r a l l i m p r e s s i o n d o es n o t n e c e s s a r i l y r e f l e c t i m p r e s s i o n s o f t h e i n d i v i d u a l f a c e t s o f t h i s t r a n s i t i o n p e r i o d . Summar y A l t h o u g h t h e f a m i l i e s i n t h i s s t u d y were i n t e r v i e w e d a t v a r i o u s p o i n t s d u r i n g t h e t r a n s i t i o n p e r i o d , t h e y were a b l e t o r e c a l l and r e l a t e t h e i r e x p e r i e n c e s f r o m t h e t i m e o f i n i t i a l d i a g n o s i s . T h e i r r e c o l l e c t i o n o f t h e e v e n t s , t h e i r f e e l i n g s and c o p i n g s t r a t e g i e s was e x c e l l e n t . The e x p e r i e n c e s o f t h e s e f a m i l i e s were c l o s e l y l i n k e d to a s e r i e s o f e v e n t s w h i c h p r o v i d e d t h e b a s i s f o r t h e f o u r f a c e t s o u t l i n e d . These e v e n t s e v o k e d f e e l i n g s t a t e s , t h e p r i m a r y one b e i n g u n c e r t a i n t y . B e c a u s e o f t h e d i s c o m f o r t and f e a r a c c o m p a n y i n g t h i s s t a t e , f a m i l i e s t r i e d t o r e d u c e t h i s u n c e r t a i n t y . H a v i n g t o r e p e a t e d l y e x p l a i n t h e i r c h i l d ' s c o n d i t i o n t o o t h e r s was a demand w h i c h f r u s t r a t e d t h e p a r e n t s and s o m e t i m e s i n c r e a s e d t h e i r a n x i e t y . P a r e n t s u s e d a r a n g e o f c o p i n g s t r a t e g i e s t o a t t e m p t t o a t t a i n t h e g o a l s i m p l i c i t f o r t h i s t r a n s i t i o n p e r i o d . F o r some f a m i l i e s , t h e w a i t f o r c o r r e c t i v e h e a r t s u r g e r y was t h r e e y e a r s . As a r e s u l t , t h r e e o f t h e c h i e f s t r a t e g i e s e m p l o y e d were " n o r m a l i z i n g , " " b e i n g h o p e f u l , " and " f o c u s i n g on t h e p r e s e n t " i n an a t t e m p t t o m a i n t a i n an 128 o p t i m i s t i c o u t l o o k a t l e a s t u n t i l c l o s e t o t h e a n t i c i p a t e d t i m e o f t h e s u r g e r y . The t h r e e f a m i l i e s who were i n t e r v i e w e d w i t h i n one month o f t h i s e v e n t , d i s c u s s e d t h e i r i n c r e a s i n g a n x i e t y , e v o k e d by t h e r e a l i t y o f t h e s u r g e r y . At t h i s t i m e t h e y s p e n t more t i m e " a n t i c i p a t i n g t h e f u t u r e , " " t r u s t i n g h e a l t h c a r e p r o f e s s i o n a l s , " and " s e e k i n g s u p p o r t . " One f a m i l y , who d e c l i n e d t o be i n t e r v i e w e d s t a t e d t h a t t h e f a t h e r was t o o u p s e t a b o u t t h e u p c o m i n g s u r g e r y t o t a l k t o a n y o n e . T w o - t h i r d s o f t h e p a r e n t s , i n d i s c u s s i n g t h e i r o v e r a l l i m p r e s s i o n s o f t h e e x p e r i e n c e , had n o t f o u n d t h e i r c h i l d ' s i l l n e s s t o be as d i s r u p t i v e t o f a m i l y l i f e as t h e y had a n t i c i p a t e d . The two f a m i l i e s who were most a f f e c t e d by t h e c h i l d ' s i l l n e s s f e l t t h a t t h e y w o u l d be s t r o n g e r and c l o s e r as a r e s u l t o f t h e e x p e r i e n c e . 129 CHAPTER 5 D i s c u s s i o n o f F i n d i n g s I n t r o d u c t i o n The p u r p o s e o f t h i s c h a p t e r i s t o d i s c u s s t h e f i n d i n g s o f t h e s t u d y i n r e l a t i o n t o o t h e r r e s e a r c h s t u d i e s . Some of t h i s e m p i r i c a l d a t a was m e n t i o n e d i n c h a p t e r 2 where a s e l e c t i o n o f b o t h e x p e r i e n t i a l l y and r e s e a r c h - b a s e d p u b l i c a t i o n s were r e v i e w e d . I n t h i s c h a p t e r , o n l y e m p i r i c a l d a t a w h i c h e i t h e r s u p p o r t s o r r e f u t e s t h e s p e c i f i c f i n d i n g s o f t h i s s t u d y w i l l be d i s c u s s e d . A number o f s t u d i e s were f o u n d w h i c h f o c u s e d on t h e c o n c e r n s o f p a r e n t s h a v i n g c h i l d r e n w i t h CHD. However, t h e l i m i t a t i o n s o f t h e s e s t u d i e s a r e m u l t i p l e when c o n s i d e r e d c o l l e c t i v e l y . These l i m i t a t i o n s w i l l be d e s c r i b e d as d a t a i s c i t e d f r o m e a c h . I t i s d i f f i c u l t t o g e n e r a l i z e t h e f i n d i n g s o f many o f t h e s e s t u d i e s b e c a u s e o f p r o b l e m s i n s t u d y d e s i g n , r e p o r t i n g and o u t - d a t e d r e s u l t s - S e v e r a l o f t h e s e s t u d i e s were c o n d u c t e d i n t h e 60's and most o f t h e o t h e r s i n t h e e a r l y 7 0 ' s . A d v a n c e s i n t h e d i a g n o s i s and s u r g i c a l t r e a t m e n t o f CHD s i n c e t h e n has a f f e c t e d t h e e x p e r i e n c e o f t h e s e f a m i l i e s . At l e a s t h a l f o f t h e s t u d i e s i n c l u d e d o n l y m o t h e r s ' p e r c e p t i o n s w h i c h n a r r o w s t h e v i e w o f t h e f a m i l y ' s e x p e r i e n c e t o t h i s one p a r e n t . B e c a u s e o f t h e b r o a d r a n g e o f d i a g n o s e s , a g e s and o p e r a t i v e e x p e r i e n c e s o f t h e c h i l d r e n i n many o f t h e s t u d i e s and l a c k o f s e p a r a t i o n i n t o s m a l l e r more homogeneous g r o u p s , i t was 130 d i f f i c u l t to c o m p a r e the d a t a to the f i n d i n g s o f t h e c u r r e n t s t u d y . B e c a u s e o f t h e l i m i t a t i o n s o f t h e p u b l i s h e d r e s e a r c h on f a m i l i e s h a v i n g c h i l d r e n d i a g n o s e d w i t h CHD, t h i s c h a p t e r w i l l a l s o i n c l u d e a l o o k a t more g e n e r a l f a m i l y l i t e r a t u r e . P u b l i c a t i o n s d e s c r i b i n g the e x p e r i e n c e o f f a m i l i e s a f t e r l e a r n i n g the d i a g n o s i s o f a v a r i e t y o f d e f e c t s and d i s e a s e s and w h i l e c o p i n g w i t h t h e s e i l l n e s s e s o v e r the l o n g t e r m w i l l h e l p t o e x p l a i n the f i n d i n g s o f t h i s s t u d y . T h i s d i s c u s s i o n w i l l f o l l o w t h e same b a s i c o u t l i n e as c h a p t e r 4 . H o w e v e r , t h e themes o f " u n c e r t a i n t y " and " e x p l a i n i n g to o t h e r s " w h i c h r e c u r r e d t h r o u g h o u t the f o u r f a c e t s w i l l be d e s c r i b e d s e p a r a t e l y a t the end o f t h e f a c e t s e c t i o n to m i n i m i z e r e p e t i t i o n . F a c e t s o f t h e E x p e r i e n c e  D i a g n o s i s o f C o n g e n i t a l H e a r t D i s e a s e A d i a g n o s i s o f CHD meant the l o s s o f t h e n o r m a l c h i l d the p a r e n t s i n the c u r r e n t s t u d y had e n v i s i o n e d . W h i l e p a r e n t s were r e a c t i n g to t h i s l o s s t h e y were a l s o h a v i n g to d e a l w i t h t h e i r f e e l i n g s a b o u t an i l l i n f a n t whom t h e y a l s o t h o u g h t t h e y m i g h t l o s e . I n i t i a l r e a c t i o n s . S h o c k was one r e a c t i o n to the d i a g n o s i s w h i c h a l l o f the p a r e n t s i n the c u r r e n t s t u d y d e s c r i b e d . T h e y t a l k e d a b o u t h a v i n g no r e a s o n to s u s p e c t a p r o b l e m and most had n e v e r h e a r d o f c a r d i a c d e f e c t s w h i c h p e r h a p s i n c r e a s e d 131 t h e i r f e e l i n g s o f s h o c k . J o h n s ( 1 9 7 1 ) r e p o r t e d t h a t t h o s e p a r e n t s i n h e r s t u d y who had n e v e r h e a r d o f t h e i r c h i l d ' s s p e c i f i c d e f e c t ( s ) f e l t more i n t e n s e s h o c k t h a n t h o s e who had h e a r d t h a t s u c h an a b n o r m a l i t y c o u l d o c c u r . The 12 f a m i l i e s i n t e r v i e w e d i n t h a t s t u d y had c h i l d r e n b o r n w i t h v a r i o u s c o m b i n a t i o n s o f c o n g e n i t a l a b n o r m a l i t i e s . O t h e r s t u d i e s r e v i e w e d a l s o d e s c r i b e d t h i s r e a c t i o n o f s h o c k ( D r o t a r e t a l . , 1975 ; W a e c h t e r , 1 9 7 7 1 ) . O t h e r r e a c t i o n s t o t h e d i a g n o s i s i n t h i s s t u d y i n c l u d e d d i s b e l i e f , s a d n e s s , a n x i e t y , h e l p l e s s n e s s , a n g e r and g u i l t . These e m o t i o n s were n o t d e s c r i b e d by a l l p a r e n t s , h o w e v e r , t h o s e p a r e n t s who s p e n t a l o t o f t i m e t a l k i n g a b o u t t h i s f a c e t d i d d e s c r i b e most o f t h e s e r e a c t i o n s . T h e r e was no c l e a r p r o g r e s s i o n f r o m one f e e l i n g t o a n o t h e r , i n s t e a d i t was l i k e a f l o o d o f m i x e d e m o t i o n s . T h i s i s c o n t r a r y t o t h e f i n d i n g s o f D r o t a r e t a l . ( 1 9 7 5 ) who r e p o r t e d t h a t f a m i l i e s go t h r o u g h e m o t i o n a l s t a g e s f o l l o w i n g t h e b i r t h . I n t h a t s t u d y , 25 p a r e n t s o f 20 c h i l d r e n w i t h a v a r i e t y o f d e f e c t s , i n c l u d i n g c a r d i a c , were i n t e r v i e w e d u s i n g a s t r u c t u r e d i n t e r v i e w g u i d e . The t i m i n g o f t h e i n t e r v i e w s r a n g e d f r o m 7 days t o 60 months a f t e r t h e b i r t h . F i v e s t a g e s o f p a r e n t a l r e a c t i o n t o t h e b i r t h were i d e n t i f i e d . These w e r e : s h o c k ; d e n i a l ; s a d n e s s , a n g e r and a n x i e t y ; a d a p t a t i o n ; and r e o r g a n i z a t i o n . The q u e s t i o n s a s k e d o f p a r e n t s , a l t h o u g h o p e n - e n d e d , were q u i t e d i r e c t i v e . One o f t h e l a t t e r q u e s t i o n s s p e c i f i c a l l y a s k e d p a r e n t s , " c o u l d you t e l l me a g a i n what s t a g e s you remember 132 g o i n g t h r o u g h s i n c e t h e baby was b o r n " ( p . 7 1 2 ) . T h i s i m p l i e s t h a t a s t a g e m o d e l was c o n c e i v e d p r i o r t o d a t a c o l l e c t i o n . Even i n r e p o r t i n g t h e s t a g e s , a c l e a r d e m a r c a t i o n was o f t e n c l o u d e d by comments s u c h a s , " a c c o m p a n y i n g and f o l l o w i n g t h e s t a g e o f d i s b e l i e f were i n t e n s e f e e l i n g s o f s a d n e s s and a n g e r " ( p . 7 1 2 ) . T h e r e f o r e , t h i s i n v e s t i g a t o r has c o n s i d e r e d t h a t s t a g e m o d e l w i t h some r e s e r v a t i o n . The r e a c t i o n s o f p a r e n t s i n th e c u r r e n t s t u d y d i d n o t f i t a s t a g e m o d el b e c a u s e t h e y were d e s c r i b e d as b e i n g c o n c u r r e n t o r o v e r l a p p i n g . S e v e r a l r e s e a r c h e r s have r e p o r t e d t h a t when d e f e c t s a r e i n v i s i b l e , as a r e c a r d i a c d e f e c t s , d i s b e l i e f may be 9 i n t e n s i f i e d ( D r o t a r e t a l . , 1975; G a r s o n e t a l . , 1978; 3 K u p s t e t a l . , 1977; W a e c h t e r , 1 9 7 7 ) . I n t h e c u r r e n t s t u d y , d i s b e l i e f was o n l y m e n t i o n e d by a few p a r e n t s and seemed to be s h o r t - l i v e d . T h i s c o u l d p e r h a p s be r e l a t e d t o th e n e c e s s i t y f o r i m m e d i a t e m e d i c a l i n t e r v e n t i o n i n t h e f o r m o f b a l l o o n a t r i a l s e p t o s t o m y i n two c a s e s , c o a r c t a t i o n r e p a i r i n one c a s e and ICU m o n i t o r i n g i n f o u r c a s e s . S a d n e s s , a n x i e t y and h e l p l e s s n e s s were t h r e e i n t e r r e l a t e d e m o t i o n s f o r some p a r e n t s i n t h e c u r r e n t s t u d y . P a r e n t s were s a d , f i r s t b e c a u s e t h e i r c h i l d was n o t n o r m a l a n d , s e c o n d , b e c a u s e o f t h e s e v e r i t y o f t h e d e f e c t . The d i a g n o s i s o f any c o n g e n i t a l d e f e c t i s a n x i e t y p r o v o k i n g f o r p a r e n t s b u t d o u b l y so when i t i s p e r c e i v e d t o be l i f e t h r e a t e n i n g . Not o n l y h a v e p a r e n t s l o s t t h e e x p e c t e d n o r m a l i n f a n t b u t t h e y a r e t h r e a t e n e d w i t h l o s i n g t h e i l l 133 i n f a n t as w e l l . Words s u c h as " s c a r e d " and " w o r r i e d " d e s c r i b e d t h e a n x i e t y t h e y f e l t as a d e f i n i t i v e d i a g n o s i s was b e i n g made and a l s o a f t e r i t was c o n f i r m e d i f t h e c h i l d ' s l i f e seemed t o be i n d a n g e r . H e l p l e s s n e s s was d e s c r i b e d by a c o u p l e o f p a r e n t s i n r e l a t i o n t o t h e i r l a c k o f c o n t r o l o v e r t h e i l l c h i l d ' s f u t u r e . S a d n e s s o r g r i e f a r e a l m o s t a l w a y s d e s c r i b e d as r e a c t i o n s t o t h e d i a g n o s i s o f any c o n g e n i t a l a n o m a l y ( D r o t a r e t a l . , 1975; G a r s o n e t a l . , 1978; J o h n s , 1971; W a e c h t e r , 1 9 7 7 ) . However, a n x i e t y and h e l p l e s s n e s s a r e l e s s o f t e n r e p o r t e d . P e r h a p s t h e s e e m o t i o n s a r e r e l a t e d t o t h e s e v e r i t y o f t h e a n o m a l y and a r e t h e r e f o r e more o f t e n r e p o r t e d i f t h e a n o m a l y i s p o t e n t i a l l y l i f e t h r e a t e n i n g , as a r e c a r d i a c d e f e c t s . D r o t a r e t a l . ( 1 9 7 5 ) s t a t e d t h a t f e a r o f d e a t h c a u s e d r e l u c t a n c e on t h e p a r t o f some p a r e n t s t o become a t t a c h e d t o t h e i r i n f a n t s . T h i s was n e v e r b r o u g h t up by t h e p a r e n t s i n t h e c u r r e n t s t u d y . I t c o u l d be t h a t s u c h r e l u c t a n c e had more to do w i t h t h e v i s i b i l i t y o f t h e a n o m a l i e s i n t h o s e c h i l d r e n and n o t so much w i t h t h e t h r e a t o f d e a t h . I n t h e c u r r e n t s t u d y , most p a r e n t s t a l k e d a b o u t i n i t i a l l y s e a r c h i n g f o r a c a u s e f o r t h e d e f e c t and i n t h e p r o c e s s s o m e t i m e s b l a m i n g t h e m s e l v e s o r s o m e t h i n g o r someone e l s e . The need t o f i n d a c a u s e was l i n k e d t o c o n c e r n a b o u t t h e r e s u l t s o f f u t u r e p r e g n a n c i e s . W a e c h t e r ( 1 9 7 7 ) r e l a t e d t h i s s e a r c h f o r a c a u s e t o t h e need f o r a " s a t i s f a c t o r y , s e c u r i t y - p r o d u c i n g a n s w e r " ( p . 304) w h i c h w o u l d a b s o l v e t h e p a r e n t s o f any b l a m e . The m o t h e r s 134 i n t e r v i e w e d i n J o h n ' s s t u d y ( 1 9 7 1 ) had m u l t i p l e t h e o r i e s o f c a u s a t i o n b u t t h e s a l i e n t p o i n t was t h a t t h i s was s o m e t h i n g w h i c h c o n c e r n e d them a l l . D r o t a r e t a l . ( 1 9 7 5 ) d i d n o t m e n t i o n t h i s s e a r c h i n g b e h a v i o u r b u t p e r h a p s t h e d i r e c t i v e n a t u r e o f t h e i r q u e s t i o n i n g d i d n o t a l l o w p a r e n t s t o d e s c r i b e t h i s a s p e c t o f t h e i r e x p e r i e n c e . G a r s o n e t a l . ( 1 9 7 8 ) r e m a r k t h a t i n t h e c a s e o f CHD p a r e n t s o f t e n blame t h e m s e l v e s f o r t h e d e f e c t b e c a u s e t h e e t i o l o g y i s u s u a l l y n o t known. I n t h a t s t u d y a l a r g e number o f p a r e n t s d e c i d e d a g a i n s t h a v i n g more c h i l d r e n b e c a u s e o f a f e a r o f w o r s e d e f e c t s . Of t h e t h r e e c o u p l e s i n t h e c u r r e n t s t u d y who t a l k e d a b o u t h a v i n g more c h i l d r e n , o n l y one m o t h e r seemed r e a l l y f e a r f u l a b o u t a r e c u r r e n c e o f c a r d i a c d e f e c t s . The o t h e r s were r e a s s u r e d t h a t t h e c a u s e was n o t g e n e t i c and t h e c h a n c e o f r e c u r r e n c e was s l i m . I n a r e c e n t s t u d y , Dunning'* ( 1 9 8 4 ) r e p o r t e d t h a t t h e s e c o n d l a r g e s t c a t e g o r y o f c o n c e r n s were a b o u t e t i o l o g y , i n c l u d i n g what c a u s e d t h e d e f e c t and what t h e h e r e d i t a r y p r o p e r t i e s wer e . A d j u s t i n g t o C a r i n g f o r C h i l d Once Home I n t h e c u r r e n t s t u d y , f e a r t h a t t h e c h i l d m i g h t d i e s u d d e n l y was n o t i s o l a t e d t o t h e i n i t i a l f a c e t s u r r o u n d i n g d i a g n o s i s b u t e x t e n d e d t o t h e p e r i o d o f a d j u s t m e n t once t h e c h i l d was b r o u g h t home f r o m t h e h o s p i t a l . T h i s was a f i n d i n g common t o o t h e r s t u d i e s , b o t h t h o s e c o n s i d e r i n g a v a r i e t y o f d e f e c t s ( W a e c h t e r , 1977) and t h o s e s p e c i f i c t o 135 c a r d i a c d e f e c t s ( D ' A n t o n i o , 1976 ;-* D u n n i n g , 1984; G l a s e r e t a l . , 1 9 6 4 ; 6 M a x w e l l & Gane, 1 9 6 2 7 ) . "Sudden d e a t h i s an u n u s u a l mode o f e x i t u s , e x c e p t p e r h a p s i n t h e c a s e o f t r i c u s p i d a t r e s i a " ( M a x w e l l & Gane, 1962, p. 4 5 3 ) . I t i s c u r i o u s t h a t p a r e n t s t o d a y o f t e n f e a r s udden d e a t h , g i v e n t h e a d v a n c e s i n t h e m e d i c a l and s u r g i c a l management o f c h i l d r e n w i t h CHD and henc e t h e more o p t i m i s t i c p r o g n o s t i c o u t l o o k g i v e n by p h y s i c i a n s . P e r h a p s more u n d e r s t a n d a b l e were t h e f e a r s o f s u d d e n d e a t h i n t h e e a r l y 60's when t h e r e were f e w e r s u r g i c a l i n t e r v e n t i o n s a v a i l a b l e and t h e l o n g - t e r m and s o m e t i m e s e v e n s h o r t - t e r m o u t l o o k f o r t h e c h i l d r e n was b l e a k . Why t h e n t h i s r e c u r r i n g theme o v e r more t h a n two d e c a d e s ? W a e c h t e r ( 1 9 7 7 ) l i n k s t h i s f e a r t o t h e i n v i s i b l e n a t u r e o f c o n g e n i t a l d e f e c t s i n v o l v i n g v i t a l o r g a n s and s a y s t h a t e v e n r e a s s u r a n c e by a m e d i c a l team w i l l n o t n e c e s s a r i l y d i s p e l s u c h f e a r s . I n t h e c u r r e n t s t u d y , p a r e n t s were t o l d o f u n t o w a r d symptoms t o w a t c h f o r w h i c h m i g h t i n d i c a t e a d e t e r i o r a t i o n i n t h e c h i l d ' s c o n d i t i o n . A l t h o u g h p a r e n t s a p p r e c i a t e d t h i s i n f o r m a t i o n , i t a l s o made them t h i n k t h a t s udden d e t e r i o r a t i o n and d e a t h was a p o s s i b i l i t y . A l s o , p a r e n t s were u n c e r t a i n a b o u t t h e i r a b i l i t y t o j u d g e t h e r e l a t i v e s e r i o u s n e s s o f symptoms and a c t a p p r o p r i a t e l y . T h i s f e e l i n g o f u n c e r t a i n t y was s u p p o r t e d by D u n n i n g ' s d a t a ( 1 9 8 4 ) when p a r e n t s a s k e d q u e s t i o n s a b o u t symptoms and what to do s h o u l d t h e y d e v e l o p . 136 P i n e l l i (1981)° f o u n d t h a t m o t h e r s ' f o r e m o s t c o n c e r n s were a b o u t t h e symptoms o f h e a r t d i s e a s e . Some w o r r i e d t h a t symptoms s u c h as h e a r t f a i l u r e , t a c h y c a r d i a , h e a r t a t t a c k o r b l u e s p e l l s w o u l d o c c u r s u d d e n l y . As i n t h e p r e s e n t s t u d y , a m a j o r c o n c e r n o f p a r e n t s was t h a t t h e y e i t h e r w o u l d n o t r e c o g n i z e d a n g e r o u s symptoms o r i f t h e y d i d r e c o g n i z e them t h a t t h e y w o u l d n o t r e a c t a p p r o p r i a t e l y . T h i s was r e f l e c t e d i n t h e i r c o n c e r n s t h a t r e l a t e d t o an " i n a b i l i t y t o d i f f e r e n t i a t e b e t w e e n n o r m a l c r y i n g e p i s o d e s and t h o s e s i g n a l l i n g p r o b l e m s c a u s e d by t h e h e a r t d i s e a s e " ( p . 2 6 6 ) . D u n n i n g ( 1 9 8 4 ) f o u n d t h a t a few p a r e n t s i n h e r s a m p l e had known a n o t h e r c h i l d w i t h CHD who d i e d u n e x p e c t e d l y h e n c e t h e i r f e a r f o r t h e i r own c h i l d r e n . B o t h D u n n i n g ( 1 9 8 4 ) and G a r s o n e t a l . ( 1 9 7 8 ) r e p o r t e d t h a t some p a r e n t s were a f r a i d t h a t t h e i r c h i l d r e n m i g h t have h e a r t a t t a c k s . T h i s was n o t b r o u g h t up by t h e p a r e n t s i n t h e c u r r e n t s t u d y w h i c h c o u l d mean t h a t e i t h e r t h e y were n o t c o n c e r n e d a b o u t t h i s o r f e l t u n e a s y m e n t i o n i n g i t . D ' A n t o n i o ( 1 9 7 6 ) r e p o r t e d t h a t m o t h e r s t h o u g h t t h a t t h e i r c h i l d ' s c a r d i a c f u n c t i o n i n g m i g h t c h a n g e s u d d e n l y and u n e x p e c t e d l y . The f e a r o f s u d d e n d e a t h was n o t a l l e v i a t e d e ven when r e a s s u r e d by p h y s i c i a n s a b o u t t h e c h i l d ' s f u t u r e and t h u s t h i s f e a r was s t i l l p r e v a l e n t d u r i n g t h e p r e s c h o o l y e a r s . To s u m m a r i z e t h e n , a f e a r o f s u d d e n d e a t h i n t h e c u r r e n t s t u d y was l i n k e d t o t h e k n o w l e d g e t h a t c y a n o s i s 137 a n d / o r c o n g e s t i v e h e a r t f a i l u r e were e x p e c t e d . P a r e n t s w o r r i e d t h a t t h e y m i g h t n o t d e t e c t symptoms i n d i c a t i n g a d e t e r i o r a t i o n i n t h e i n f a n t ' s c o n d i t i o n o r i f t h e y d i d d e t e c t them t h e y w o u l d n o t a c t a p p r o p r i a t e l y . R e a s s u r a n c e by p h y s i c i a n s o f t e n d i d n o t d i s p e l f e a r s o f s u d d e n d e t e r i o r a t i o n and d e a t h , as was s u p p o r t e d by o t h e r r e s e a r c h . P a r e n t s need t o l i v e w i t h t h e c h i l d f o r a w h i l e and see f o r t h e m s e l v e s how t h e c h i l d i s b e f o r e t h e y c a n f e e l r e a s s u r e d a b o u t h i s / h e r c o n d i t i o n . I n t e r a c t i o n s w i t h h e a l t h c a r e p r o f e s s i o n a l s . I n t e r a c t i o n s w i t h h e a l t h c a r e p r o f e s s i o n a l s d u r i n g t h i s f a c e t o f a d j u s t m e n t were d e s c r i b e d by p a r e n t s i n t h e c u r r e n t s t u d y . V i s i t s by t h e c o m m u n i t y h e a l t h n u r s e were n o t h e l p f u l t o most o f t h e p a r e n t s i n t e r v i e w e d . One m i g h t c o n c l u d e t h a t t h i s i s s o l e l y b e c a u s e o f t h e n u r s e s ' l a c k o f e x p e r t i s e i n d e a l i n g w i t h i n f a n t s w i t h CHD. However, H a r r i s o n ( 1 9 8 3 ) had s i m i l a r f i n d i n g s i n h e r s t u d y o f t h e s o u r c e s o f h e l p u t i l i z e d by 158 women w i t h n o r m a l n e w b o r n s . N u r s e s r a n k e d l a s t a f t e r o t h e r s , i n c l u d i n g h u s b a n d , p h y s i c i a n , and r e l a t i v e s o r f r i e n d s . She o f f e r s s e v e r a l e x p l a n a t i o n s , i n c l u d i n g : t h e use o f o t h e r r e s o u r c e s p r i o r t o t h e c o m m u n i t y h e a l t h n u r s e ' s f i r s t p o s t n a t a l v i s i t , n u r s e s n o t a v a i l a b l e when c o n c e r n s do a r i s e , and a l a c k o f u n d e r s t a n d i n g o f t h e r o l e o f t h e c o mmunity h e a l t h n u r s e . I n t h e c u r r e n t s t u d y , t h e f a m i l y p h y s i c i a n s and p e d i a t r i c i a n s were a l r e a d y v i e w e d as m a j o r s o u r c e s o f i n f o r m a t i o n and s u p p o r t p r i o r t o t h e n u r s e ' s v i s i t . T h i s 138 was a l s o t r u e i n P i n e l l i ' s s t u d y ( 1 9 8 1 ) . However, t h e m o t h e r s i n t h a t s t u d y r e q u e s t e d more d e t a i l e d i n f o r m a t i o n r e l a t e d t o CHD a t t h e t i m e o f t h e s e c o n d i n t e r v i e w , one month p o s t - d i s c h a r g e . P i n e l l i ( 1 9 8 1 ) i n t e r p r e t e d t h i s t o mean t h a t t h e i r i n f o r m a t i o n a l needs were n o t b e i n g met. S e v e r a l o f t h e p a r e n t s i n D u n n i n g ' s s t u d y ( 1 9 8 4 ) w i s h e d t h e y had a c c e s s t o t h e t e a c h i n g p r o g r a m she o f f e r e d when t h e i r c h i l d r e n were i n f a n t s . I t i s d i f f i c u l t t o e v a l u a t e w h e t h e r i n f a c t t h e i n f o r m a t i o n a l n eeds o f t h e p a r e n t s i n t h e c u r r e n t s t u d y were a c t u a l l y met d u r i n g t h i s f a c e t b u t s e v e r a l p a r e n t s d i d a l l u d e t o u n a n s w e r e d q u e s t i o n s d u r i n g t h a t t i m e . L i v i n g w i t h a C h i l d w i t h a C h r o n i c C o n d i t i o n I n t h e c u r r e n t s t u d y e a c h c o u p l e t o l d a u n i q u e s t o r y o f t h e i r f a m i l y ' s e x p e r i e n c e o f l i v i n g w i t h a c h i l d w i t h a c h r o n i c c o n d i t i o n . T h e r e w e r e , h o w e v e r , a number o f common a l t e r a t i o n s t h a t t h e y a l l had t o make. The f a m i l i e s who had t h e most s y m p t o m a t i c , d e m a n d i n g i n f a n t s had t o make m a j o r s h i f t s i n l i f e s t y l e w h i l e f o r o t h e r s t h e a l t e r a t i o n s were l e s s d r a m a t i c . R e p o r t s o f i r r i t a b l e , d e m a n d i n g and u n p r e d i c t a b l e i n f a n t b e h a v i o u r were g i v e n by s e v e r a l m o t h e r s i n t h e c u r r e n t s t u d y . O t h e r i n v e s t i g a t o r s had s i m i l a r f i n d i n g s . G l a s e r e t a l . ( 1 9 6 4 ) r e p o r t e d t h a t o n e - t h i r d o f t h e m o t h e r s i n t e r v i e w e d r e c a l l e d b e h a v i o u r s s u c h as i n c r e a s e d c r y i n g and i r r i t a b i l i t y d u r i n g i n f a n c y w h i c h made them f e e l f r u s t r a t e d and a n g r y . The m o t h e r s t h a t D ' A n t o n i o ( 1 9 7 6 ) 139 i n t e r v i e w e d " d e s c r i b e d t h e c h i l d f r o m e a r l y i n f a n c y t h r o u g h t h e p r e s c h o o l p e r i o d , as more i r r i t a b l e , d i s t a n t , r e s i s t a n t and d e m a n d i n g t h a n as a f f e c t i o n a t e o r c o m p l i a n t " ( p . 2 5 3 ) . M a j o r a l t e r a t i o n s i n l i f e s t y l e . T hese a l t e r a t i o n s i n l i f e s t y l e were a d i r e c t r e s u l t o f t h e amount o f t i m e and e n e r g y p a r e n t s had t o i n v e s t i n c a r i n g f o r t h e i l l i n f a n t . T h e r e was l e s s t i m e t o spend w i t h o t h e r f a m i l y members, t o t e n d t o h o u s e h o l d c h o r e s , and to engage i n o u t s i d e a c t i v i t i e s . Two o f t h e e a r l y q u a n t i t a t i v e s t u d i e s ( A p l e y e t a l . , 1967;^ M a x w e l l & Gane, 1962) n o t e d a m o d i f i e d s o c i a l l i f e as one i m p a c t o f t h e i l l n e s s on f a m i l i e s . S e v e r a l p a r e n t s i n t h e c u r r e n t s t u d y a t t r i b u t e d t h i s m o d i f i c a t i o n t o t h e c h i l d ' s i l l n e s s w h i l e o t h e r s f e l t t h a t t h e d e g r e e o f c h a n g e w o u l d have been t h e same had t h e c h i l d been n o r m a l . S t u d i e s o f t h e t r a n s i t i o n to p a r e n t h o o d when t h e c h i l d i s n o r m a l do r e v e a l " b e i n g t i e d down" as a c o n c e r n f o r m o t h e r s ( D y e r , 1963; H a r r i s o n , 1 9 8 3 ) . D u n n i n g ( 1 9 8 4 ) a s k e d p a r e n t s " t o r a t e how much t h e y f e l t t h e n e e d s o f t h e f a m i l y t e n d t o r e v o l v e a r o u n d t h e n e e d s o f t h e c h i l d " ( p . 7 6 ) . F i f t y - s e v e n p e r c e n t a n s w e r e d "somewhat" t o "most o f t h e t i m e . " However, some o f t h e p a r e n t s q u a l i f i e d t h e i r a n s w e r s by s a y i n g t h a t a l l f a m i l i e s l i v e s r e v o l v e a r o u n d t h e i r c h i l d r e n . A c o u p l e o f m o t h e r s i n t h e p r e s e n t s t u d y d e c i d e d n o t t o r e t u r n t o work u n t i l a f t e r t h e c h i l d ' s c o r r e c t i v e h e a r t s u r g e r y was d o n e . None o f t h e o t h e r s t u d i e s r e p o r t e d a d i r e c t i m p a c t o f t h e i l l n e s s on t h e m o t h e r ' s i n t e n t t o 140 w o r k . T h i s may be p a r t i a l l y e x p l a i n e d by c o n s i d e r i n g t h e f a c t t h a t most o f t h e s t u d i e s w h i c h a s k e d q u e s t i o n s a b o u t i m p a c t on f a m i l y l i f e were c o n d u c t e d i n t h e 60's when i t was much l e s s common f o r m o t h e r s t o work. F e e d i n g d i f f i c u l t i e s . Most o f t h e p a r e n t s i n t h e c u r r e n t s t u d y r e p o r t e d d i f f i c u l t i e s a s s o c i a t e d w i t h i n f a n t f e e d i n g . G e n e r a l l y , t h e y commented on how q u i c k l y t h e i n f a n t s w o u l d t i r e and t h u s f e e d i n g became a v e r y t i m e - c o n s u m i n g p r o p o s i t i o n . T h i s f i n d i n g i s s u p p o r t e d by a number o f o t h e r s t u d i e s . G i l l o n ( 1 9 7 3 ) o b s e r v e d and p a r t i c i p a t e d i n t h e c a r e o f 82 h o s p i t a l i z e d i n f a n t s w i t h CHD, r a n g i n g i n age f r o m 24 h o u r s t o 8 w e e k s . When d i s c u s s i n g t h e f e e d i n g b e h a v i o u r o f t h e s e i n f a n t s she s a i d t h a t 6 3 % had some d i f f i c u l t y . These p r o b l e m s i n c l u d e d : d i f f i c u l t y c o o r d i n a t i n g s u c k i n g , s w a l l o w i n g and b r e a t h i n g ; t h e need f o r f r e q u e n t r e s t p e r i o d s ; a n o r e x i a ; and e m e s i s . I n P i n e l l i ' s s t u d y ( 1 9 8 1 ) , f e e d i n g , n u t r i t i o n and w e i g h t g a i n were i d e n t i f i e d as m a j o r c o n c e r n s f o r m o t h e r s one month a f t e r t h e i n f a n t ' s d i s c h a r g e f r o m h o s p i t a l . Most o f t h e m o t h e r s i n D ' A n t o n i o ' s s t u d y ( 1 9 7 6 ) r e p o r t e d f e e d i n g d i f f i c u l t i e s . E i g h t e e n had p r o p p e d b o t t l e s when t h e y were " f e d up" ( p . 235) w i t h t h e l e n g t h o f t i m e f e e d i n g s t o o k ( o ne t o two h o u r s ) . Some m o t h e r s a c t u a l l y f o r c e d t h e i n f a n t s t o e a t s o l i d s " b e c a u s e t h e y had been t o l d t h a t t h e c h i l d had t o g a i n w e i g h t b e f o r e c o r r e c t i v e s u r g e r y c o u l d be p e r f o r m e d " ( p . 2 3 7 ) . These 141 i n a p p r o p r i a t e and u n s a f e p r a c t i c e s i l l u s t r a t e t h e d e g r e e o f f r u s t r a t i o n f e l t by m o t h e r s whose i n f a n t s w i t h CHD a r e d i f f i c u l t t o f e e d . M a x w e l l & Gane ( 1 9 6 2 ) r e p o r t e d o n l y 20% o f f a m i l i e s h a v i n g p r o b l e m s r e l a t e d t o f e e d i n g . T h i s i s a f a i r l y l o w p e r c e n t a g e compared t o b o t h G i l l o n ' s ( 1 9 7 3 ) and D ' A n t o n i o ' s ( 1 9 7 6 ) f i n d i n g s and t h o s e o f t h e c u r r e n t s t u d y . U n f o r t u n a t e l y , t h e r e was no i n f o r m a t i o n g i v e n a b o u t s p e c i f i c d i a g n o s e s so i t i s i m p o s s i b l e t o t e l l w h e t h e r f e w e r f e e d i n g d i f f i c u l t i e s c o u l d be a t t r i b u t e d t o l e s s s e v e r e d e f e c t s . A f i n d i n g common to b o t h t h e c u r r e n t s t u d y and G udermuth's q u a l i t a t i v e s t u d y ( 1 9 7 5 ) was t h e r e l u c t a n c e on t h e p a r t o f many m o t h e r s t o r e p o r t d i f f i c u l t i e s w i t h f e e d i n g . T h i s may have a l s o p a r t i a l l y a c c o u n t e d f o r t h e l o w numbers i n t h e s t r i c t l y q u a n t i t a t i v e M a x w e l l & Gane ( 1 9 6 2 ) s t u d y . Gudermuth ( 1 9 7 5 ) a s k e d e i g h t m o t h e r s what c o n c e r n e d them t h e most a b o u t t h e i r c h i l d ' s h e a l t h i n g e n e r a l and t h e n o f f e r e d e x a m p l e s o f p o s s i b l e p r o b l e m s i n c l u d i n g f e e d i n g d i f f i c u l t i e s and i n f a n t s i z e . None o f t h e m o t h e r s i d e n t i f i e d t h o s e as p r o b l e m s . On f u r t h e r p r o b i n g a b o u t f e e d i n g p a t t e r n s , howev e r , t h r e e m o t h e r s q u a l i f i e d t h e i r r e s p o n s e s a b o u t t h e i r c h i l d r e n b e i n g good e a t e r s . One s t a t e d t h a t h e r c h i l d " e a t s b e t t e r now t h a n b e f o r e s u r g e r y " ( p . 1 5 8 ) . T h i s was s i m i l a r t o an a c c o u n t g i v e n by one o f t h e m o t h e r s i n t h e c u r r e n t s t u d y . By way o f e x p l a n a t i o n Gudermuth ( 1 9 7 5 ) s u g g e s t s , " t o a d m i t t h a t h e r c h i l d i s n o t t h r i v i n g w o u l d s e r i o u s l y t h r e a t e n t h e 142 a l r e a d y v u l n e r a b l e m o t h e r and f u r t h e r l i m i t h e r a b i l i t y t o p r o v i d e m a t e r n a l c a r e " ( p . 1 5 9 ) . The c u r r e n t s t u d y s u p p o r t s t h i s c o n c l u s i o n . T h i s t h r e a t became o b v i o u s when a few m o t h e r s r e a c t e d w i t h a n g e r t o p e o p l e ' s comments a b o u t t h e s m a l l s i z e o f t h e i r i n f a n t s . H o s p i t a l i z a t i o n s . V e r y l i t t l e was r e p o r t e d on p a r e n t s ' r e a c t i o n s t o e i t h e r c a r d i a c c a t h e t e r i z a t i o n o r p a l l i a t i v e s u r g e r y i n t h e s t u d i e s r e v i e w e d . A l s o , most o f t h e s t u d i e s d i d n o t c l e a r l y d e l i n e a t e p r e and p o s t - o p e r a t i v e g r o u p s and few g a ve s t a t i s t i c s a b o u t how many c h i l d r e n had u n d e r g o n e p a l l i a t i v e s u r g e r y . One e x c e p t i o n was D u n n i n g ( 1 9 8 4 ) who r e p o r t e d t h a t t h e c o n c e r n s o f p a r e n t s o f f o u r c h i l d r e n who had r e c e n t l y had p a l l i a t i v e s u r g e r y and of t h r e e c h i l d r e n who had r e c e n t l y had c a r d i a c c a t h e t e r i z a t i o n s r e v o l v e d a r o u n d t h e s e p r o c e d u r e s . However, "no r e l a t i o n s h i p was f o u n d b e t w e e n t h e amount o f p a r e n t a l a n x i e t y and w h e t h e r t h e c h i l d had p r e v i o u s s u r g e r y o r i n v a s i v e t e s t i n g " ( P - 6 9 ) . The p o s t - o p e r a t i v e a p p e a r a n c e o f t h e c h i l d , i n c l u d i n g t u b e s and i n c i s i o n and any e v i d e n c e o f p a i n were t h e m a j o r c o n c e r n s o f p a r e n t s i n t h e c u r r e n t s t u d y whose c h i l d r e n u n d e r w e n t p a l l i a t i v e s u r g e r y . However, o t h e r c o n c e r n s w h i c h were c i t e d w e r e : a l a r m s g o i n g o f f , f e e l i n g h e l p l e s s and t h e s t r e s s o f o t h e r f a m i l i e s . The r e s u l t s o f a r e c e n t q u a n t i t a t i v e s t u d y ( E b e r l y , M i l e s , C a r t e r , H e n n e s s e y & R i d d l e , 1985) o f s o u r c e s o f p a r e n t a l s t r e s s f o r 510 p a r e n t s 143 o f 357 c h i l d r e n who were a d m i t t e d t o p e d i a t r i c i n t e n s i v e c a r e u n i t s , l e n d some s u p p o r t t o t h e f i n d i n g s o f t h e c u r r e n t s t u d y . I n t h e e x p e c t e d a d m i s s i o n g r o u p , t h e i t e m s w i t h t h e h i g h e s t mean s t r e s s s c o r e s were on t h e f o l l o w i n g i t e m s f r o m h i g h e s t t o l o w e s t : " b e i n g u n a b l e t o p r o t e c t my c h i l d f r o m p a i n , n o t k n o w i n g how b e s t t o h e l p my c h i l d d u r i n g t h i s c r i s i s , and s e e i n g my c h i l d a c t o r l o o k as i f i n p a i n " ( p . 6 1 ) . S e e i n g " t u b e s i n my c h i l d " and " b r u i s e s , c u t s o r i n c i s i o n s on my c h i l d " ( p . 62) were 1 1 t h and 1 2 t h o f t h e i t e m s r a n k e d i n t h e 1985 s t u d y . Not a l l o f t h e p a t i e n t s i n t h i s g r o u p had had s u r g e r y , t h e r e f o r e one c o u l d presume t h a t n o t a l l had i n c i s i o n s and t h e number o f t u b e s w o u l d have a l s o v a r i e d , t h e r e f o r e p o s s i b l y l o w e r i n g t h e r a n k o f t h e s e i t e m s . W o r r y i n g t h a t t h e i r c h i l d was i n p a i n was a m a j o r s t r e s s o r f o r p a r e n t s whose c h i l d r e n u n d e r w e n t p a l l i a t i v e s u r g e r y and t h i s i s c o n g r u e n t w i t h t h e f i n d i n g s o f t h e E b e r l y e t a l . s t u d y ( 1 9 8 5 ) . The t h o r a c o t o m y i n c i s i o n was d e s c r i b e d by s e v e r a l p a r e n t s as b e i n g l o n g e r t h a n e x p e c t e d . O f t e n t h e i r s h o c k a t t h e a p p e a r a n c e o f t h e i n c i s i o n was d i r e c t l y r e l a t e d t o how p a i n f u l t h e y i m a g i n e d i t must be f o r t h e c h i l d • I n s u m m a r i z i n g t h e e x p e r i e n c e o f f a m i l i e s l i v i n g w i t h a c h i l d w i t h a c h r o n i c c o n d i t i o n , when t h e r e were p a r e n t a l r e p o r t s o f m a j o r s h i f t s i n l i f e s t y l e t h e i n f a n t s had o b v i o u s symptoms o f CHD and were i r r i t a b l e . The f e e d i n g p r o b l e m s i d e n t i f i e d , a l b e i t somewhat r e l u c t a n t l y by t h e 144 p a r e n t s i n t h i s s t u d y , have been r e p o r t e d by o t h e r i n v e s t i g a t o r s . P a r e n t s ' r e a c t i o n s t o h e a r t c a t h e t e r i z a t i o n s and p a l l i a t i v e s u r g e r y a r e a l m o s t n e v e r r e p o r t e d i n t h e r e s e a r c h l i t e r a t u r e . A g e n e r a l s t u d y on s o u r c e s o f p a r e n t a l s t r e s s i n a p e d i a t r i c ICU d i d however o f f e r some s u p p o r t t o t h e s o u r c e s o f p a r e n t a l s t r e s s i d e n t i f i e d by p a r e n t s i n t h i s s t u d y who had e x p e r i e n c e d t h e ICU a f t e r p a l l i a t i v e s u r g e r y . W a i t i n g f o r C o r r e c t i v e H e a r t S u r g e r y The s i x f a m i l i e s i n t h e c u r r e n t s t u d y e a c h had a c h i l d a w a i t i n g c o r r e c t i v e h e a r t s u r g e r y . W a i t i n g f o r s u r g e r y i s an e x p e r i e n c e common to f a m i l i e s h a v i n g c h i l d r e n w i t h a v a r i e t y o f c h r o n i c i l l n e s s e s , however t h e r e i s a d e a r t h o f r e s e a r c h on t h e s u b j e c t . Most o f t h e s t u d i e s s p e c i f i c t o f a m i l i e s h a v i n g c h i l d r e n w i t h CHD a l s o had l i t t l e t o r e p o r t on t h i s s p e c i f i c f a c e t . T h i s was e v e n t r u e o f D u n n i n g ' s ( 1 9 8 4 ) s a m p l e w h i c h was c o m p r i s e d s o l e l y o f f a m i l i e s h a v i n g a c h i l d a w a i t i n g s u r g e r y . The q u a n t i t a t i v e p o r t i o n o f h e r d a t a c o l l e c t i o n f o c u s e d on o t h e r a s p e c t s o f t h e e x p e r i e n c e and h e n c e she had l i t t l e t o s a y a b o u t t h e " w a i t i n g " f a c e t . From t h e q u a l i t a t i v e p a r t o f h e r s t u d y she i d e n t i f i e d 12 c a t e g o r i e s o f p a r e n t a l c o n c e r n . The " p r o c e d u r e s " c a t e g o r y i n c l u d e d 20% o f t h e c o n c e r n s o f p a r e n t s . Subsumed u n d e r t h i s t i t l e were c o n c e r n s a b o u t s u r g e r y o r c a r d i a c c a t h e t e r i z a t i o n . A m a j o r c o n c e r n was n o t k n o w i n g e x a c t l y when t h e s e p r o c e d u r e s w o u l d be d o n e . T h i s was a l s o a m a j o r 145 c o n c e r n o f p a r e n t s i n t h e c u r r e n t s t u d y and w i l l be f u r t h e r a d d r e s s e d u n d e r t h e " u n c e r t a i n t y " s e c t i o n o f t h i s c h a p t e r . I n t h e p r e s e n t s t u d y , p a r e n t s g e n e r a l l y f l u c t u a t e d b e t w e e n w a n t i n g t h e s u r g e r y " o v e r w i t h " as s o o n as p o s s i b l e and w a n t i n g t o d e l a y i t as l o n g as p o s s i b l e . On t h e one h a n d , t h e y f e l t a need t o e x t i n g u i s h t h e a n x i e t y t h e y were f e e l i n g as q u i c k l y as p o s s i b l e w h i l e on t h e o t h e r hand t h e y were a f r a i d o f t h e outcome o f s u r g e r y . T h i s a m b i v a l e n c e a b o u t t h e w a i t f o r s u r g e r y was a l l u d e d t o by G l a s e r e t a l . ( 1 9 6 4 ) . They r e p o r t e d t h a t most m o t h e r s were g l a d o f t h i s i n t e r v a l b e c a u s e i t meant t h e p o s s i b i l i t y o f i m p r o v e d s u r g i c a l t e c h n i q u e s by t h e t i m e t h e i r c h i l d r e n n e e ded s u r g e r y . T h i s , o f c o u r s e , was more o f a c o n c e r n o v e r two d e c a d e s ago t h a n i t i s now. Some m o t h e r s a l s o r e g a r d e d t h i s i n t e r v a l as a c h a n c e f o r t h e c h i l d t o grow and h e n c e be b e t t e r a b l e t o w i t h s t a n d t h e o p e r a t i o n . On t h e o t h e r h a n d , a few m o t h e r s were a f r a i d t h a t t h e c h i l d ' s c o n d i t i o n m i g h t w o r s e n d u r i n g t h i s i n t e r v a l . I t was i m p o s s i b l e t o d e t e r m i n e i f i n f a c t t h e same p a r e n t s f l u c t u a t e d b e t w e e n w a n t i n g t h e s u r g e r y " o v e r w i t h " and w a n t i n g t o d e l a y i t , o r i f i t was d i f f e r e n t p a r e n t s w a n t i n g e a c h a l t e r n a t i v e . S i m i l a r t o t h e G l a s e r e t a l . ( 1 9 6 4 ) f i n d i n g s , i n t h e c u r r e n t s t u d y one c o u p l e were a f r a i d t h a t l u n g damage m i g h t o c c u r i f t h e w a i t was p r o l o n g e d w h i l e most f e l t t h a t t h e i r c h i l d w o u l d p r o b a b l y s t a n d a b e t t e r c h a n c e i f h e / s h e was b i g g e r . E i g h t y - t h r e e p e r c e n t o f p a r e n t s i n t h e M a x w e l l & Gane s t u d y ( 1 9 6 2 ) s a i d t h a t " s u r g e r y and s h o r t - t e r m r i s k 146 were more t o l e r a b l e t h a n p r o l o n g e d a n x i e t y " ( p . 4 5 3 ) . G e n e r a l l y , t h i s a l s o seemed t o be t h e o v e r a l l f e e l i n g amongst p a r e n t s i n t h e c u r r e n t s t u d y - - t h a t i s w a n t i n g t o g e t t h e s u r g e r y " o v e r w i t h " was a s t r o n g e r f e e l i n g t h a n w a n t i n g t o d e l a y i t . W h i l e some p a r e n t s i n t h e p r e s e n t s t u d y w a n t e d t o d e l a y t h e s u r g e r y somewhat, t h e y u s u a l l y w a n t e d i t c o m p l e t e d b e f o r e t h e c h i l d was o l d enough t o u n d e r s t a n d o r remember t h e e v e n t . They a l s o w o r r i e d a b o u t h a v i n g t o p r e p a r e an o l d e r c h i l d . I n D u n n i n g ' s ( 1 9 8 4 ) s t u d y , s i x m o t h e r s q u e s t i o n e d how b e s t t o p r e p a r e t h e m s e l v e s and t h e i r c h i l d r e n t o cope w i t h t h e p r o c e d u r e s . P a r e n t s o f t e n do n o t f e e l c o m p e t e n t t o p r e p a r e t h e i r c h i l d r e n f o r s u c h a p r o c e d u r e p e r h a p s b e c a u s e t h e y a r e u n s u r e a b o u t many a s p e c t s t h e m s e l v e s . They may a l s o w o r r y t h a t t h e y l a c k t h e s p e c i f i c k n o w l e d g e n e c e s s a r y t o t e a c h t o a c h i l d ' s d e v e l o p m e n t a l l e v e l as s e v e r a l p a r e n t s i n t h e c u r r e n t s t u d y s t a t e d • C o n t e m p l a t i n g r i s k s . I t was q u i t e a p p a r e n t t o most o f t h e p a r e n t s i n t h e c u r r e n t s t u d y t h a t t h e i r c h i l d r e n n e e ded s u r g e r y b e c a u s e t h e y had o b v i o u s symptoms o f t h e c a r d i a c c o n d i t i o n and s e v e r a l had a l r e a d y r e q u i r e d e i t h e r b a l l o o n a t r i a l s e p t o s t o m y a n d / o r p a l l i a t i v e s u r g e r y . However, one t o d d l e r a p p e a r e d e s s e n t i a l l y n o r m a l and h i s p a r e n t s had t o w e i g h t h e r i s k o f s u r g e r y a g a i n s t t h e r i s k o f d i s a l l o w i n g s u r g e r y and e n c o u n t e r i n g c o m p l i c a t i o n s l a t e r . I n t h r e e o t h e r 147 s t u d i e s ( D u n n i n g , 1984; G a r s o n e t a l . , 1978; G l a s e r e t a l . , 1964) p a r e n t s whose c h i l d r e n were v i r t u a l l y a s y m p t o m a t i c a l s o q u e s t i o n e d t h e n e c e s s i t y o f s u r g e r y and had d i f f i c u l t y d e c i d i n g t o a l l o w i t . A l t h o u g h p a r e n t s a r e g e n e r a l l y t o l d a b o u t t h e c a r d i a c and l u n g damage w h i c h w i l l o c c u r o v e r t i m e t h e y a p p a r e n t l y s t i l l h a ve some d o u b t s . The c r u x o f t h e m a t t e r seems t o be t h a t t h i s i s t h e i r c h i l d and t h e r e f o r e u l t i m a t e l y t h e y h a v e t o l i v e w i t h t h e c o n s e q u e n c e s o f t h e i r d e c i s i o n . The m a j o r i t y o f t h e p a r e n t s i n t h e p r e s e n t s t u d y e x p r e s s e d a f e a r t h a t t h e i r c h i l d m i g h t d i e d u r i n g s u r g e r y . I n some c a s e s t h i s r i s k had been m e n t i o n e d by p h y s i c i a n s w h i l e i n o t h e r s i t seemed t o stem f r o m what t h e y had s e e n o f o t h e r c h i l d r e n i n t h e h o s p i t a l o r h e a r d o r r e a d a b o u t . O n l y 5 o f 56 p a r e n t s i n D u n n i n g ' s s t u d y ( 1 9 8 4 ) e x p r e s s e d t h e f e a r t h a t t h e i r c h i l d w o u l d d i e d u r i n g s u r g e r y . D u n n i n g ( 1 9 8 4 ) d i d n o t r e p o r t how s o o n t h e s u r g e r y was a n t i c i p a t e d f o r t h e c h i l d r e n i n h e r s t u d y . P e r h a p s t h e r e was a l o n g e r a n t i c i p a t e d i n t e r v a l t o c o r r e c t i v e s u r g e r y t h e r e f o r e d e c r e a s i n g t h e l i k e l i h o o d o f p a r e n t s e i t h e r t h i n k i n g a b o u t o r r e p o r t i n g s u c h f e a r s . The p a r e n t s i n t h e c u r r e n t s t u d y t r i e d n o t t o t h i n k a b o u t t h e s u r g e r y u n t i l q u i t e c l o s e t o t h e d a t e and had o b v i o u s d i f f i c u l t y v o i c i n g t h e i r f e a r s a b o u t t h i s u l t i m a t e r i s k . I t c o u l d be t h a t a c t u a l l y e x p r e s s i n g s u c h f e a r s makes d e a t h seem more r e a l o r p o s s i b l e . L e w a n d o w s k i ( 1 9 8 0 ) o b s e r v e d and i n t e r v i e w e d 59 p a r e n t s o f c h i l d r e n who had u n d e r g o n e o p e n - h e a r t 148 s u r g e r y . She r e p o r t e d t h a t a l m o s t a l l o f t h e p a r e n t s e i t h e r e x p r e s s e d o p e n l y o r h i n t e d t h a t t h e y had been a f r a i d t h a t t h e i r c h i l d r e n m i g h t d i e d u r i n g s u r g e r y . T h i s d a t a was c o l l e c t e d p o s t - o p e r a t i v e l y when p e r h a p s p a r e n t s c a n more e a s i l y e x p r e s s s u c h f e a r s . I m p a c t o f p r e v i o u s e x p e r i e n c e . Those p a r e n t s i n t h e c u r r e n t s t u d y whose c h i l d r e n had had p a l l i a t i v e s u r g e r y seemed more c o n c e r n e d a b o u t t h e u p c o m i n g c o r r e c t i v e s u r g e r y t h a n t h o s e whose c h i l d r e n had n o t . P a r t i a l e v i d e n c e o f t h i s c o n c e r n was t h e f a c t t h a t a l l o f t h o s e p a r e n t s whose c h i l d r e n had p r e v i o u s s u r g e r y e x p r e s s e d a f e a r t h a t t h e i r c h i l d m i g h t d i e d u r i n g t h e c o r r e c t i v e s u r g e r y . I f i n d e e d t h e r e i s s u c h a r e l a t i o n s h i p , t h e n t h e f a c t t h a t o n l y 1 1 % o f t h e c h i l d r e n i n D u n n i n g 1 s s t u d y ( 1984) had p a l l i a t i v e s u r g e r y may p a r t l y a c c o u n t f o r t h e f a c t t h a t o n l y 9% o f t h e p a r e n t s i n t h a t s t u d y e x p r e s s e d t h i s f e a r . P a l l i a t i v e s u r g e r y b r i n g s p a r e n t s c l o s e t o what t h e y e n v i s i o n t h e c o r r e c t i v e s u r g i c a l e x p e r i e n c e t o be and i t a l s o i n c r e a s e s t h e i r e x p o s u r e t o o t h e r c h i l d r e n who have u n d e r g o n e c o r r e c t i v e s u r g e r y . As a r e s u l t , t h e i r a n x i e t y may be i n t e n s i f i e d t h r o u g h t h e p a l l i a t i v e s u r g i c a l e x p e r i e n c e . A n t i c i p a t i n g s u r g e r y . The f i n d i n g o f t h e c u r r e n t s t u d y t h a t t i m e s p e n t t h i n k i n g a b o u t t h e s u r g e r y and a p p r e h e n s i o n a b o u t t h e e v e n t i n c r e a s e d when a d a t e was a c t u a l l y known c o u l d n o t be c o r r o b o r a t e d w i t h any o t h e r r e s e a r c h s t u d i e s . I n f o r m a t i o n 149 a b o u t t h e a n t i c i p a t e d t i m e i n t e r v a l b e t ween d a t a c o l l e c t i o n and s u r g e r y was n o t g i v e n i n any o f t h e o t h e r r e p o r t s . To s u m m a r i z e t h e f a c e t o f " w a i t i n g f o r c o r r e c t i v e h e a r t s u r g e r y , " a l t h o u g h p a r e n t s g e n e r a l l y f e l t a m b i v a l e n t a b o u t t h e t i m e i n t e r v a l t o c o r r e c t i v e s u r g e r y most a l s o f e l t t h a t a s h o r t w a i t was p r e f e r a b l e t o a l o n g w a i t - I n c o n t e m p l a t i n g t h e r i s k s , t h e m a j o r i t y f e l t t h a t d e a t h was a p o s s i b i l i t y b u t t h e y had d i f f i c u l t y d i s c u s s i n g t h i s f e a r . Two f i n d i n g s c o u l d n o t be c o r r o b o r a t e d . These were t h a t p r e v i o u s e x p e r i e n c e w i t h p a l l i a t i v e s u r g e r y seemed t o h e i g h t e n c o n c e r n s a b o u t t h e a n t i c i p a t e d c o r r e c t i v e s u r g e r y and when an a c t u a l d a t e had been s e t f o r t h e c o r r e c t i v e s u r g e r y t h e a p p r e h e n s i o n o f p a r e n t s i n c r e a s e d . Common Themes o f t h e F a c e t s o f t h e E x p e r i e n c e Unc e r t a i n t y . U n c e r t a i n t y was t h e m a j o r f e e l i n g s t a t e w h i c h p e r s i s t e d t h r o u g h t h e e n t i r e t r a n s i t i o n p e r i o d f o r t h e f a m i l i e s i n t h e c u r r e n t s t u d y . The c h a r a c t e r i s t i c s o f t h i s u n c e r t a i n t y v a r i e d d u r i n g t h e f o u r f a c e t s o f t h e e x p e r i e n c e and f r o m one f a m i l y t o t h e n e x t b u t i t d i d p e r s i s t . The c o n c e p t o f u n c e r t a i n t y has been s t u d i e d and s e v e r a l i n s t r u m e n t s d e v e l o p e d by M.H. M i s h e l . R e f e r e n c e t o one o f h e r s t u d i e s w i l l h e l p e x p l a i n t h e f i n d i n g s o f t h e c u r r e n t s t u d y . A c c o r d i n g t o M i s h e l ( 1 9 8 3 ) , "... t h e c h a r a c t e r i s t i c s o f u n c e r t a i n t y may r e s i d e i n t h e n a t u r e o f t h e s t i m u l u s , i n t h e c h a r a c t e r i s t i c s o f t h e p e r c e i v e r , o r i n an i n t e r a c t i o n b e t w e e n s t i m u l u s and p e r c e i v e r i n 150 r e l a t i o n t o f o u r g e n e r a l c l a s s e s o f i l l n e s s - t r e a t m e n t e v e n t s " ( p . 3 2 5 ) . I n one s t u d y ( 1 9 8 3 ) she m e a s u r e d p a r e n t s ' p e r c e p t i o n s o f u n c e r t a i n t y c o n c e r n i n g t h e i r h o s p i t a l i z e d c h i l d by l o o k i n g a t t h e f o u r c h a r a c t e r i s t i c s o f a m b i g u i t y , l a c k o f c l a r i t y , l a c k o f i n f o r m a t i o n and u n p r e d i c t a b i l i t y . She c ompared t h e p e r c e p t i o n s o f 272 p a r e n t s o f t h r e e g r o u p s o f c h i l d r e n h o s p i t a l i z e d f o r a v a r i e t y o f r e a s o n s . M i s h e l ( 1 9 8 3 ) f o u n d t h a t t h e a b s e n c e o f p r e d i c t a b i l i t y was n o t a s s o c i a t e d w i t h a s t r o n g n e g a t i v e e v a l u a t i o n o f t h e s e r i o u s n e s s o f i l l n e s s and t h o u g h t t h a t t h i s m i g h t mean t h a t u n p r e d i c t a b i l i t y was p r e f e r a b l e t o a n e g a t i v e p r e d i c t a b i l i t y . The c u r r e n t s t u d y d o e s n o t s u p p o r t h e r c o n c l u s i o n t h a t p a r e n t s p r e f e r u n p r e d i c t a b i l i t y t o a n e g a t i v e p r e d i c t a b i l i t y . I n f a c t , j u s t t h e o p p o s i t e , most p a r e n t s w a n t e d t o know t h e w o r s t p o s s i b l e s c e n a r i o s so t h e y c o u l d be p r e p a r e d . By u s i n g t h e c o p i n g s t r a t e g y o f " b e i n g h o p e f u l " i n c o n j u n c t i o n w i t h " a n t i c i p a t i n g t h e f u t u r e " p a r e n t s were a b l e t o d i f f u s e t h e i r a n x i e t y w h i l e a t t h e same t i m e p r e p a r i n g f o r n e g a t i v e e v e n t s . A n o t h e r f i n d i n g i n M i s h e l ' s s t u d y ( 1 9 8 3 ) was t h a t a n e g a t i v e c o r r e l a t i o n e x i s t e d b e t w e e n l a c k o f i n f o r m a t i o n and j u d g e d s e r i o u s n e s s o f i l l n e s s , i m p l y i n g t h a t l a c k o f i n f o r m a t i o n may m o d e r a t e t h e e v a l u a t i o n o f t h e g r a v i t y o f t h e s i t u a t i o n . T h i s c e r t a i n l y seemed t o be t r u e i n t h e c u r r e n t s t u d y . F o r e x a m p l e , t h o s e p a r e n t s whose c h i l d r e n had n o t e x p e r i e n c e d p a l l i a t i v e s u r g e r y were o b v i o u s l y more o p t i m i s t i c a b o u t t h e c o r r e c t i v e s u r g e r y and t h e i r c h i l d ' s 151 p o s t - o p e r a t i v e c o u r s e t h a n t h o s e who had e x p e r i e n c e d t h i s s u r g e r y . U n c e r t a i n t y a b o u t d i a g n o s i s was a c o n c e r n f o r p a r e n t s i n t h e c u r r e n t s t u d y b e f o r e t h e i n f a n t s were t r a n s f e r r e d t o t h e t e r t i a r y c a r e c e n t r e b u t o n c e t h e r e , t h i s u n c e r t a i n t y was q u i c k l y d i s p e l l e d - O l d e r s t u d i e s s o m e t i m e s m e n t i o n a p r o l o n g e d d e l a y i n p i n p o i n t i n g t h e d i a g n o s i s w h i c h was most t r o u b l e s o m e f o r p a r e n t s ( A p l e y e t a l • , 1967; M a x w e l l & Gane, 1 9 6 2 ) . T h i s i s n o t a f r e q u e n t o c c u r r e n c e t o d a y , e s p e c i a l l y o n c e t h e c h i l d i s r e f e r r e d t o a c a r d i o l o g i s t , b e c a u s e o f t h e a c c u r a c y o f c u r r e n t d i a g n o s t i c t e s t s s u c h as t h e e c h o c a r d i o g r a m . Some o f t h e most t r o u b l e s o m e t y p e s o f u n c e r t a i n t y i n t h e c u r r e n t s t u d y r e v o l v e d a r o u n d n o t k n o w i n g t h e t i m i n g o f s u r g e r y , b o t h p a l l i a t i v e and c o r r e c t i v e , and a l s o n o t k n o w i n g t h e outcome o f t h o s e o p e r a t i o n s . S i m i l a r l y , K u p s t e t a l . ( 1 9 7 6 ) r e p o r t e d t h a t p a r e n t s were o b v i o u s l y u n c o m f o r t a b l e w i t h u n c e r t a i n t y and w a n t e d d e f i n i t e a n s w e r s t o q u e s t i o n s a b o u t p r o g n o s i s and t h e n e c e s s i t y and t i m i n g o f f u t u r e s u r g e r y . The p u r p o s e o f t h a t q u a n t i t a t i v e s t u d y was t o e v a l u a t e c o m m u n i c a t i o n b e t w e e n p a r e n t s and p h y s i c i a n s i n a c a r d i a c o u t p a t i e n t d e p a r t m e n t . I n D u n n i n g ' s s t u d y ( 1 9 8 4 ) , o f t h e 11 c a t e g o r i e s o f c o n c e r n i d e n t i f i e d , t h e " f u t u r e " c a t e g o r y i n c l u d e d t h e most c o n c e r n s ( 2 3 % ) o f b o t h m o t h e r s and f a t h e r s . The m a j o r t y p e o f c o n c e r n i n t h a t c a t e g o r y was t h e u n c e r t a i n t y o f n o t 152 k n o w i n g w h e t h e r t h e c h i l d w o u l d r e q u i r e c a r d i a c c a t h e t e r i z a t i o n a n d / o r s u r g e r y . When p a r e n t s f i r s t f i n d o u t a b o u t t h e d i a g n o s i s o f CHD, t h e y want t o know what t h e f u t u r e h o l d s i n t e r m s o f p r o g n o s i s and t r e a t m e n t . A l t h o u g h a d e f i n i t i v e t i m e t a b l e c a n n o t u s u a l l y be o f f e r e d , most p a r e n t s want t o know t h e r a n g e o f p o s s i b l e s c e n a r i o s f o r t h e i r c h i l d . T h i s need t o know what t h e d i a g n o s i s w i l l mean i s a common f i n d i n g no m a t t e r what t h e s p e c i f i c d e f e c t o r i l l n e s s i s . Those f a m i l i e s i n J o h n ' s s t u d y ( 1 9 7 1 ) whose c h i l d r e n r e q u i r e d l a t e r s u r g e r y o r o t h e r t r e a t m e n t s were c o n s t a n t l y t r y i n g t o c l a r i f y t i m e s c h e d u l e s and p r o g n o s e s . The 10 f a t h e r 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 t e r v i e w e d by M c k e e v e r ( 1 9 8 1 ) f e l t t h e most t r o u b l e s o m e i s s u e f o r them was t h e u n c e r t a i n t y a s s o c i a t e d w i t h t h e r e l a t i v e l y u n p r e d i c t a b l e n a t u r e o f t h e d i s e a s e s . C o m a r o f f & M a g u i r e ( 1 9 8 1 ) c o n d u c t e d a s t u d y i n E n g l a n d w i t h t h e f a m i l i e s o f 60 c h i l d r e n w i t h l e u k e m i a . The r e p o r t o f t h e m e t h o d o l o g y i s u n c l e a r , t h e r e f o r e t h e r e a d e r s h o u l d v i e w t h e f i n d i n g s w i t h some r e s e r v a t i o n . The u n p r e d i c t a b i l i t y o f t h e c o u r s e and outcome f o r a c h i l d w i t h l e u k e m i a was o f m a j o r c o n c e r n t o t h e p a r e n t s . T h i s i s a common f e a t u r e o f most c h r o n i c i l l n e s s e s . The v i r t u a l a b s e n c e o f " b e n c h - m a r k s " d u r i n g a p e r i o d o f r e m i s s i o n c a n be l i k e n e d t o s u c h an a b s e n c e d u r i n g t h e c o u r s e o f CHD once t h e c h i l d has been s t a b i l i z e d w i t h m e d i c a l o r s u r g i c a l i n t e r v e n t i o n . P a r e n t s i n t h a t s t u d y ( C o m a r o f f & M a g u i r e , 153 1981) l o o k e d t o bone marrow a s p i r a t i o n s w i t h a n t i c i p a t i o n , h o p i n g t h a t t h e y w o u l d g i v e more i n f o r m a t i o n a b o u t t h e c h i l d ' s p r o g r e s s and e v e n t u a l outcome o f t h e i l l n e s s . S i m i l a r i l y , i n t h e c u r r e n t s t u d y , h e a r t c a t h e t e r i z a t i o n s r e p r e s e n t e d t h e p o s s i b i l i t y o f i n f o r m a t i o n w h i c h w o u l d d e c r e a s e t h e u n c e r t a i n t y f e l t by p a r e n t s a b o u t t h e i r c h i l d ' s f u t u r e . E x p l a i n i n g t o o t h e r s . Demands f o r e x p l a n a t i o n s a b o u t t h e c h i l d ' s c o n d i t i o n f r o m r e l a t i v e s , f r i e n d s and e ven s t r a n g e r s was s o m e t h i n g w h i c h p a r e n t s had t o c o n t e n d w i t h t h r o u g h o u t t h e t r a n s i t i o n p e r i o d . I t was o f s u c h c o n c e r n t o one m o t h e r t h a t t h i s was t h e t o p i c she s t a r t e d h e r a c c o u n t w i t h . L i m i t e d c o r r o b o r a t i o n was f o u n d f o r t h e c o n c e r n s t h a t p a r e n t s e x p r e s s e d a b o u t h a v i n g t o r e p e a t e d l y e x p l a i n t h e i r c h i l d ' s s t a t u s . The f a c t t h a t t h e m a j o r i t y o f t h e o t h e r s t u d i e s f o c u s i n g on f a m i l i e s h a v i n g c h i l d r e n w i t h CHD u s e d a q u a n t i t a t i v e m e t h o d o l o g y may p a r t i a l l y a c c o u n t f o r t h i s d i f f e r e n c e . T h e r e was one i s o l a t e d p i e c e o f d a t a f o u n d w h i c h s u p p o r t s t h i s c o n c e r n . Gudermuth ( 1 9 7 5 ) d i d r e p o r t t h a t one m o t h e r i d e n t i f i e d t h e most d i f f i c u l t p a r e n t a l t a s k c o n f r o n t i n g h e r as a r e s u l t o f t h e h e a r t d e f e c t was a n s w e r i n g p e o p l e s ' q u e s t i o n s a b o u t h e r c h i l d . The d i f f i c u l t y o f e x p l a i n i n g t o s i b l i n g s , i d e n t i f i e d i n t h e c u r r e n t s t u d y , was w e l l s u p p o r t e d by T a y l o r ' s s t u d y ( 1 9 8 0 ) . The p u r p o s e o f t h a t s t u d y was t o e l i c i t 154 d e s c r i p t i o n s d i r e c t l y f r o m w e l l c h i l d r e n a b o u t t h e e f f e c t s o f t h e i r s i b l i n g ' s c h r o n i c i l l n e s s (CHD, a s t h m a o r c y s t i c f i b r o s i s ) on t h e i r l i f e . T w e n t y - f i v e s i b l i n g s b e t w e e n t h e ages o f 7-12 y e a r s who were o l d e r t h a n t h e i l l c h i l d t o o k p a r t i n t h e s t u d y . When t h e p a r e n t s were a s k e d what t h e y t o l d t h e w e l l c h i l d r e n a b o u t t h e i l l n e s s e s , t h e y r e p o r t e d h a v i n g d i f f i c u l t y e x p l a i n i n g a t an a p p r o p r i a t e l e v e l . S e v e r a l p a r e n t s i n t h e c u r r e n t s t u d y a l s o m e n t i o n e d t h i s as a c o n c e r n . Some p a r e n t s i n T a y l o r ' s s t u d y ( 1 9 8 0 ) had d i f f i c u l t y r e m a i n i n g p a t i e n t when a l o t o f r e p e t i t i v e q u e s t i o n s were a s k e d and most p a r e n t s s a i d t h a t t h e y d i d n o t d i s c u s s t h e t o p i c o f t h e c h i l d ' s i l l n e s s v e r y o f t e n . The s t a t e m e n t s f r o m t h e w e l l s i b l i n g s i n d i c a t e d t h a t i n d e e d t h e y d i d n o t have a d e q u a t e k n o w l e d g e a b o u t t h e i l l c h i l d r e n ' s c o n d i t i o n s and t h e y a l l i n d i c a t e d an i n t e r e s t i n k n o w i n g more. C o p i n g S t r a t e g i e s L i k e o t h e r c h r o n i c i l l n e s s e s , CHD i s a s s o c i a t e d w i t h some a c u t e p h a s e s e i t h e r c a u s e d by t h e d i s e a s e i t s e l f o r i t s t r e a t m e n t . T h e r e f o r e , i t seems a p p r o p r i a t e i n i n t r o d u c i n g t h i s s e c t i o n , t o f o c u s on a q u a n t i t a t i v e s t u d y e n t i t l e d , " c o p i n g s t r a t e g i e s u s e d by p a r e n t s d u r i n g t h e i r c h i l d ' s h o s p i t a l i z a t i o n i n an ICU" ( M i l e s & C a r t e r , 1 9 8 5 ) . A r e v i e w o f t h e i r f i n d i n g s show t h a t many o f t h e c o p i n g s t r a t e g i e s w h i c h a r e us e d by p a r e n t s i n an a c u t e phase o f an i l l n e s s a r e a l s o u s e d d u r i n g more c h r o n i c p h a s e s as d e s c r i b e d by t h e p a r e n t s i n t h e c u r r e n t s t u d y . The 155 s u b j e c t s , 21 m o t h e r s and 15 f a t h e r s o f 27 c h i l d r e n , were i n t e r v i e w e d w i t h i n f i v e d a y s o f t h e i r c h i l d ' s d i s c h a r g e f r o m a p e d i a t r i c ICU. R e a s o n s f o r a d m i s s i o n v a r i e d , b u t 65% were e x p e c t e d o r p l a n n e d . The c o p i n g s t r a t e g i e s p e r c e i v e d by p a r e n t s as t h e most h e l p f u l i n c l u d e d : 1) " b e i n g n e a r my c h i l d as much as p o s s i b l e " 2) "making s u r e my c h i l d i s g e t t i n g p r o p e r c a r e " 3) " b e l i e v i n g my c h i l d i s g e t t i n g t h e b e s t c a r e p o s s i b l e " 4) " p r a y i n g " 5) " a s k i n g q u e s t i o n s o f t h e s t a f f " 6) " s e e k i n g as much i n f o r m a t i o n as p o s s i b l e " 7) " h a v i n g hope" 8) " t a l k i n g w i t h o t h e r p a r e n t s " 9) " s e e k i n g h e l p o r c o m f o r t f r o m o t h e r s " ( M i l e s & C a r t e r , 1985, p. 1 7 ) . A l l o f t h e s e s t r a t e g i e s c a n be subsumed u n d e r f i v e o f t h e s t r a t e g i e s u s e d by t h e p a r e n t s i n t h e c u r r e n t s t u d y ; " b e i n g v i g i l a n t " ( 1 , 2 ) , " t r u s t i n g h e a l t h c a r e p r o f e s s i o n a l s " ( 3 ) , " b e i n g h o p e f u l " ( 4 , 7 ) , " a n t i c i p a t i n g t h e f u t u r e " u s i n g i n f o r m a t i o n s e e k i n g t a c t i c ( 5 , 6 ) , and " s e e k i n g s u p p o r t " ( 8 , 9 ) . The f i n d i n g s o f t h a t s t u d y t h e r e f o r e l e n d s u p p o r t t o t h e p r e m i s e t h a t p a r e n t s o f c h i l d r e n w i t h CHD use s i m i l a r c o p i n g s t r a t e g i e s t o o t h e r p a r e n t s o f i l l c h i l d r e n , i n a c u t e as w e l l as c h r o n i c p h a s e s o f i l l n e s s . Most o f t h e s t u d i e s o f f a m i l i e s h a v i n g c h i l d r e n w i t h CHD f o c u s e d on t h e f e e l i n g s o f p a r e n t s and n o t so much on th e c o p i n g s t r a t e g i e s u s e d by t h o s e p a r e n t s . T h e r e f o r e , f e w e r r e f e r e n c e s w i l l be made t o t h o s e s t u d i e s i n t h i s s e c t i o n . S t u d i e s t h a t a r e n o t s p e c i f i c t o CHD w i l l be p r i m a r i l y c i t e d h e r e i n an a t t e m p t t o d i s c e r n w h i c h 156 s t r a t e g i e s a r e g e n e r a l l y u s e d by p a r e n t s h a v i n g c h i l d r e n w i t h a v a r i e t y o f c h r o n i c i l l n e s s e s . T r u s t i n g H e a l t h C a r e P r o f e s s i o n a l s An i m p o r t a n t c o p i n g s t r a t e g y f o r t h e p a r e n t s i n t e r v i e w e d was t o t r u s t t h e h e a l t h c a r e p r o f e s s i o n a l s i n v o l v e d i n t h e i r c h i l d ' s c a r e . T h r o u g h t r u s t i n g , t h e p a r e n t s were a b l e t o f e e l r e a s s u r e d when t h e c h i l d was i n p r o f e s s i o n a l c a r e and m a i n t a i n a somewhat o p t i m i s t i c o u t l o o k a b o u t t h e c h i l d ' s f u t u r e . A phenomenon n o t i c e d i n t h e c u r r e n t s t u d y was t h a t p a r e n t s d i d n o t l e t n e g a t i v e e x p e r i e n c e s w i t h h e a l t h c a r e p r o f e s s i o n a l s a t c o mmunity h o s p i t a l s i n t e r f e r e w i t h t h e b u i l d i n g o f t r u s t i n g r e l a t i o n s h i p s a t t h e t e r t i a r y c a r e h o s p i t a l . K i r k p a t r i c k , H o f f m a n & F u t t e r m a n ( 1 9 7 4 ) n o t e d t h e same phenomenon i n t h e i r q u a l i t a t i v e s t u d y o f 24 f a m i l i e s h a v i n g c h i l d r e n w i t h l e u k e m i a . They e x p l a i n e d i t t h i s way, " t h e e f f i c i e n c y , c o m p e t e n c y and c e r t a i n t y d e m o n s t r a t e d by t h e h o s p i t a l a t t h i s t i m e r e d u c e d p a r e n t a l u n c e r t a i n t y and r e a s s u r e d p a r e n t s t h a t t h e y were i n t h e hands o f t r u s t w o r t h y m e d i c a l c a r e g i v e r s " ( p . 1 7 0 ) . T h i s phenomenon maybe f u r t h e r e x p l a i n e d by T h o r n e & R o b i n s o n ' s ( i n p r e s s ) model o f h e a l t h c a r e r e l a t i o n s h i p s . Such r e l a t i o n s h i p s a r e c o n c e p t u a l i z e d as a p r o c e s s , i n c l u d i n g t h e p h a s e s o f : n a i v e t r u s t i n g , d i s e n c h a n t m e n t , and g u a r d e d a l l i a n c e . At t h e t i m e o f t r a n s f e r t o t h e t e r t i a r y c a r e c e n t r e t h e p a r e n t s seemed t o s t i l l be i n t h e p hase o f n a i v e t r u s t i n g . I n t h i s p h a s e , p e o p l e assume t h a t 157 t h e i r p e r s p e c t i v e i s a commonly h e l d p e r s p e c t i v e w i t h t h e h e a l t h c a r e p r o f e s s i o n a l s who c a r e f o r t h e i r i l l member and t h u s , t h e y e x p e c t " t o be c o n s u l t e d and i n f o r m e d r e g a r d i n g p r o f e s s i o n a l management o f c a r e " ( p . 1 4 ) . However, T h o r n e & R o b i n s o n ( i n p r e s s ) go on t o s a y , "when f a m i l y members e x p e r i e n c e d unmet e x p e c t a t i o n s o v e r t i m e , t h e i r t r u s t f a l t e r e d and t h e y moved i n t o t h e phase o f d i s e n c h a n t m e n t " ( p . 1 5 ) . P e r h a p s i f t h e i n f a n t s had s p e n t more t i m e a t t h e c o m m u n i t y h o s p i t a l s p r i o r t o t r a n s f e r , t h e p a r e n t s ' a s s u m p t i o n s w o u l d have been i r r e p a r a b l y s h a t t e r e d and a l l r e m n a n t s o f t h e i r n a i v e t r u s t l o s t . As i t was, any f e e l i n g s o f d i s s a t i s f a c t i o n w i t h h e a l t h c a r e p r o f e s s i o n a l s were put a s i d e when t h e y g o t t o t h e t e r t i a r y c e n t r e . A l s o , p a r e n t s who were d i s s a t i s f i e d w i t h c o mmunity h e a l t h n u r s e s s t i l l seemed a b l e t o t r u s t t h e n u r s e s a t t h e t e r t i a r y c a r e h o s p i t a l . T h i s d e m o n s t r a t e s how v e r y i m p o r t a n t i t i s f o r p a r e n t s t o t r y t o h o l d o n t o t h e i r n a i v e t r u s t . They must be t r u l y d i s s a t i s f i e d b e f o r e t h e y a c t u a l l y move i n t o t h e phase o f d i s e n c h a n t m e n t . G e n e r a l l y , p a r e n t s i n t h e c u r r e n t s t u d y were p l e a s e d w i t h t h e e f f o r t s made by t h e p h y s i c i a n s t o keep them i n f o r m e d . D u n n i n g ( 1 9 8 4 ) a s k e d p a r e n t s t o i n d i c a t e who t h e y d i s c u s s e d t h e i r c o n c e r n s w i t h and w h e t h e r o r n o t t h e s e p e o p l e were h e l p f u l . The c a r d i o l o g i s t s were c o n s u l t e d most f r e q u e n t l y and were f o u n d t o be h e l p f u l 8 1 % o f t h e t i m e . When p a r e n t s d i d n o t f i n d them t o be h e l p f u l i t was u s u a l l y b e c a u s e t h e y e i t h e r were t o o u p s e t t o a s s i m i l a t e t h e 158 i n f o r m a t i o n o r d i d n o t u n d e r s t a n d what was b e i n g s a i d . A p l e y ( 1 9 6 7 ) a l s o f o u n d t h a t a n x i e t y i m p a i r e d a p a r e n t ' s a b i l i t y t o u n d e r s t a n d what was b e i n g s a i d and t h i s was one r e a s o n f o r p a r e n t a l d i s s a t i s f a c t i o n w i t h a c o n s u l t a t i o n . One m o t h e r i n t h e c u r r e n t s t u d y r e l i e d on h e r co m m u n i t y h e a l t h n u r s e t o c l a r i f y what t h e c a r d i o l o g i s t s a i d t h a t she d i d n o t u n d e r s t a n d . She was t h e o n l y m o t h e r who i d e n t i f i e d t h e c o m m u n i t y h e a l t h n u r s e as a h e l p f u l , t r u s t e d h e a l t h c a r e p r o f e s s i o n a l . T h u s , i n t h i s p a r t i c u l a r s i t u a t i o n , t h e n u r s e s had t h e a b i l i l t y t o answer q u e s t i o n s s p e c i f i c t o t h e c a r d i a c c o n d i t i o n and t h i s p r o v i d e d a b a s i s f o r a t r u s t i n g r e l a t i o n s h i p . D u n n i n g ( 1 9 8 4 ) f o u n d t h a t n u r s e s were r a n k e d f i f t h a s a s o u r c e o f s u p p o r t and r a t e d as h e l p f u l o n l y 55% o f t h e t i m e . O n l y h o s p i t a l n u r s e s , n o t community h e a l t h n u r s e s , were m e n t i o n e d i n h e r d i s c u s s i o n . N u r s e s were r a t e d as n o t h e l p f u l when t h e y d i d n o t know t h e a n s w e r s t o q u e s t i o n s o r gave c o n f l i c t i n g i n f o r m a t i o n . The f a c t t h a t t h e r e was no d e s i g n a t e d ward f o r c a r d i a c p a t i e n t s a t t h a t p a r t i c u l a r c h i l d r e n ' s h o s p i t a l and h e a r t s u r g e r y was done a t a n o t h e r a g e n c y p r o b a b l y l i m i t e d t h e n u r s e s ' e x p e r t i s e w i t h t h i s p a r t i c u l a r p a t i e n t p o p u l a t i o n . Some p a r e n t s d i d n o t c o n s u l t n u r s e s b e c a u s e t h e y assumed t h a t t h e n u r s e s w o u l d n o t be a b l e t o answer t h e i r q u e s t i o n s . I n t h e c u r r e n t s t u d y , t h e n u r s e s a t t h e t e r t i a r y c a r e h o s p i t a l were d e s c r i b e d as b e i n g h e l p f u l b u t t h o s e a t t h e co m m u n i t y h o s p i t a l s and f r o m t h e co m m u n i t y h e a l t h u n i t o f t e n were 159 n o t , u s u a l l y b e c a u s e o f t h e i r l a c k o f e x p e r t i s e w i t h c h i l d r e n w i t h CHD. A c o n f i d e n t manner and h o n e s t , c a r i n g c o m m u n i c a t i o n were i m p o r t a n t q u a l i t i e s l o o k e d f o r by p a r e n t s i n t h e c u r r e n t s t u d y . T h o r n e & R o b i n s o n ( i n p r e s s ) f o u n d t h a t f a m i l y members e v a l u a t e d c o m p e t e n c e a l m o s t s o l e l y on t h e b a s i s o f "human q u a l i t i e s s u c h as t h e d e g r e e t o w h i c h t h e h e a l t h c a r e p r o f e s s i o n a l e x p r e s s e d i n t e r e s t i n t h e i r c a r e " ( p . 1 9 ) . K u p s t e t a l . ( 1 9 7 6 ) r e p o r t e d t h a t p a r e n t s were p l e a s e d when s t a f f showed t h a t t h e y were g e n u i n e l y i n t e r e s t e d i n them and c a r e d a b o u t what t h e y u n d e r s t o o d . S i m i l a r l y , Hayes & Knox ( 1 9 8 4 ) f o u n d t h a t p a r e n t s o f c h i l d r e n h o s p i t a l i z e d w i t h l o n g - t e r m d i s a b i l i t i e s were a b l e t o t r u s t t h o s e h e a l t h c a r e p r o f e s s i o n a l s who were c o m p e t e n t and c a r i n g . I n t h e c u r r e n t s t u d y , some p a r e n t s had a p a r t i c u l a r l y c l o s e r e l a t i o n s h i p w i t h one h e a l t h c a r e p r o f e s s i o n a l who p r o v i d e d i n f o r m a t i o n and s u p p o r t o v e r t h e l o n g t e r m . The need f o r s u c h an a l l i a n c e may be g r e a t e s t when t h e c h i l d i s o b v i o u s l y s y m p t o m a t i c and r e q u i r i n g a l o t o f t i m e and e n e r g y , as was t h e c a s e f o r t h o s e p a r e n t s d e s c r i b i n g s u c h a r e l a t i o n s h i p i n t h e p r e s e n t s t u d y . O t h e r s t u d i e s r e v i e w e d d i d n o t d e s c r i b e s u c h l o n g - t e r m a l l i a n c e s . H owever, most o f t h o s e s t u d i e s t h a t d i d a s k p a r e n t s a b o u t s o u r c e s o f s u p p o r t were q u a n t i t a t i v e , t h u s n o t a l l o w i n g f o r t h e d e s c r i p t i o n o f s u c h r e l a t i o n s h i p s . 160 To s u m m a r i z e , t h e q u a l i t i e s w h i c h p a r e n t s i n t h i s s t u d y l o o k e d f o r i n h e a l t h c a r e p r o f e s s i o n a l s were a c o n f i d e n t manner; h o n e s t , i n f o r m a t i v e c o m m u n i c a t i o n ; and g e n u i n e i n t e r e s t i n t h e i r c h i l d and f a m i l y as a w h o l e . The i m p o r t a n c e o f t h e s e q u a l i t i e s was s u p p o r t e d by t h e l i t e r a t u r e . A s p e c i a l a l l i a n c e w i t h one h e a l t h c a r e p r o f e s s i o n a l was p a r t i c u l a r l y i m p o r t a n t t o t h o s e p a r e n t s whose c h i l d r e n were o b v i o u s l y s y m p t o m a t i c and d e m a n d i n g o v e r t h e l o n g t e r m b u t c o r r o b o r a t i o n f o r t h i s was n o t f o u n d i n t h e s t u d i e s r e v i e w e d . N a i v e t r u s t was n o t e a s i l y s h a t t e r e d w h i c h i l l u s t r a t e s how c r u c i a l t h e c o p i n g s t r a t e g y o f " t r u s t i n g h e a l t h c a r e p r o f e s s i o n a l s " i s t o p a r e n t s . S e e k i n g S u p p o r t A s o c i a l s u p p o r t n e t w o r k c o m p r i s e d o f r e l a t i v e s , f r i e n d s and o t h e r p a r e n t s o f i l l c h i l d r e n was i d e n t i f i e d as h e l p f u l by a l l o f t h e p a r e n t s i n t h e c u r r e n t s t u d y . The e x t e n t o f h e l p o f f e r e d by e a c h o f t h e t h r e e g r o u p s v a r i e d d e p e n d i n g on t h e f a m i l y ' s n e e d s and a v a i l a b i l i t y o f t h o s e p e o p l e . F o r most o f t h e p a r e n t s , when r e l a t i v e s were a v a i l a b l e , t h e y o f f e r e d a more m e a n i n g f u l q u a l i t y o f s u p p o r t t h a n t h a t o f f e r e d by f r i e n d s . Those f a m i l i e s whose r e l a t i v e s l i v e d a t a d i s t a n c e r e a l l y m i s s e d t h e i r s u p p o r t . H owever, t h e f a m i l i e s a l s o i d e n t i f i e d t h a t r e l a t i v e s demanded more i n t h e way o f e x p l a n a t i o n s and r e a s s u r a n c e t h a n d i d f r i e n d s . T h r e e o f t h e e i g h t m o t h e r s i n Gudermuth's s t u d y ( 1 9 7 5 ) i d e n t i f i e d t h e c h i l d r e n s ' g r a n d m o t h e r s as s o u r c e s o f h e l p 161 i n t h e e a r l y c a r e o f t h o s e c h i l d r e n . F r i e n d s were n o t m e n t i o n e d . D u n n i n g ( 1 9 8 4 ) i d e n t i f i e d f r i e n d s as t h e t h i r d and f a m i l y members as t h e f o u r t h most f r e q u e n t l y u s e d s o u r c e s o f s u p p o r t , a f t e r c a r d i o l o g i s t s and p e d i a t r i c i a n s . The f r i e n d s were a l s o f o u n d t o be h e l p f u l more o f t e n t h a n t h e f a m i l y members b e c a u s e f r i e n d s were " n o t so i n v o l v e d " w h e r e a s f a m i l y members t e n d e d t o be " j u s t as u p s e t " as t h e p a r e n t s ( D u n n i n g , 1984, p. 7 1 ) . T h i s c o r r o b o r a t e s t h e f i n d i n g s o f t h e c u r r e n t s t u d y . Now, t u r n i n g t o r e s e a r c h f o c u s i n g on f a m i l i e s h a v i n g c h i l d r e n w i t h o t h e r c h r o n i c i l l n e s s e s , s i m i l a r n e e d s f o r s o c i a l s u p p o r t and s i m i l a r l i m i t a t i o n s c a n be f o u n d . B u r t o n ( 1 9 7 5 ) r e p o r t e d t h a t p a r e n t 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 were o f t e n c u t o f f f r o m t h e e m o t i o n a l s u p p o r t o f f r i e n d s and r e l a t i v e s b e c a u s e t h e y were t o o t h r e a t e n e d by t h e d i s e a s e t o be a b l e t o d i s c u s s t h e c h i l d ' s c o n d i t i o n r e a l i s t i c a l l y and o f t e n c o n t i n u e d t o deny i t s e x i s t e n c e . T h i s l a c k o f a c c e p t a n c e was s o m e t h i n g s e v e r a l p a r e n t s i n t h e c u r r e n t s t u d y t a l k e d a b o u t and i t was e v e n more o f a p r o b l e m when t h e c h i l d had few symptoms a n d / o r r e l a t i v e s l i v e d a t a d i s t a n c e so s e l d o m saw t h e c h i l d . P a r e n t s o f c h i l d r e n w i t h c a n c e r who r a t e d s o u r c e s o f s u p p o r t , i d e n t i f i e d r e l a t i v e s as t h e most o f t e n s o u g h t o u t a l o n g w i t h p h y s i c i a n s b u t t h e r e l a t i v e s r a n k e d o n l y s i x t h i n t e r m s o f p e r c e i v e d h e l p f u l n e s s ( M o r r o w , H o a g l a n d , & M o r s e , 1 9 8 2 ) . F r i e n d s , who were l e s s o f t e n c o n t a c t e d , were p e r c e i v e d as b e i n g s l i g h t l y more h e l p f u l . " O t h e r p a r e n t s " 162 were t h e s i x t h most f r e q u e n t l y c o n t a c t e d g r o u p and t h e y r a n k e d t h i r d i n t e r m s o f p e r c e i v e d h e l p f u l n e s s , b e h i n d o n l y t h e s p o u s e s and p h y s i c i a n s . The f a c t t h a t a l l o f t h e p a r e n t s b e l o n g e d t o m u t u a l h e l p g r o u p s v e r y l i k e l y skewed t h i s f i n d i n g . P a r e n t s u p p o r t g r o u p s were i d e n t i f i e d as s o u r c e s o f s u p p o r t by o n l y two m o t h e r s i n t h e c u r r e n t s t u d y — o n e had a c t u a l l y s o u g h t o u t a g r o u p and t h e o t h e r p l a n n e d t o . A c o u p l e o f f a t h e r s f o u n d t a l k i n g t o o t h e r p a r e n t s i n t h e h o s p i t a l h e l p f u l b u t none showed any i n t e r e s t i n p a r e n t s u p p o r t g r o u p s . I n M c K e e v e r ' s s t u d y ( 1 9 8 1 ) f a t h e r s were g e n e r a l l y h e s i t a n t t o a s s o c i a t e w i t h p a r e n t s u p p o r t g r o u p s . Some s t a t e d t h a t t h e i r c h i l d "was n o t t h a t s i c k " w h i l e o t h e r s p r e f e r r e d " t o s o c i a l i z e w i t h n o r m a l p e o p l e " ( p . 1 2 7 ) . The two m o t h e r s i n t h e c u r r e n t s t u d y who s o u g h t o u t o t h e r p a r e n t s d i d so a t t h e t i m e o f d i a g n o s i s and s u r g e r y . S i m i l a r l y , C o m a r o f f & M a g u i r e ( 1 9 8 1 ) r e p o r t e d t h a t o t h e r p a r e n t s o f c h i l d r e n w i t h l e u k e m i a were s o u g h t o u t a t p o i n t s o f c r i s i s s u c h as i n i t i a l d i a g n o s i s and r e l a p s e . They e x p l a i n e d t h a t p a r e n t s d i d n o t s e e k o u t o t h e r s u f f e r e r s when t h e i r l i v e s were r e l a t i v e l y s t a b l e b e c a u s e t h e y wanted to a v o i d t h e p o s s i b i l i t y o f d i s o r i e n t i n g i n f o r m a t i o n . S p o u s a l s u p p o r t was n o t e x p l i c i t l y a d d r e s s e d by most o f t h e p a r e n t s i n t h e c u r r e n t s t u d y . P e r h a p s t h i s was a r e f l e c t i o n o f t h e f a c t t h a t t h e p a r e n t s were i n t e r v i e w e d t o g e t h e r . Much o f t h e t i m e h o w e v e r , t h e y d i d use t h e t e r m "we" as t h o u g h i t was a j o i n t e x p e r i e n c e and i n most 163 i n s t a n c e s what e a c h had t o s a y d u r i n g t h e i n t e r v i e w d i d n o t come as a s h o c k t o t h e p a r t n e r so p r e v i o u s d i s c u s s i o n had o b v i o u s l y t a k e n p l a c e . The f a c t t h a t most c o u p l e s w o rked t o g e t h e r t o c a r e f o r t h e i l l c h i l d was a l s o e v i d e n c e o f s p o u s a l s u p p o r t . O t h e r r e s e a r c h e r s h a v e a d d r e s s e d s p o u s a l s u p p o r t . D r o t a r e t a l . (1975) c o n c l u d e d t h a t a p o s i t i v e l o n g - t e r m a c c e p t a n c e o f a c h i l d w i t h a c o n g e n i t a l m a l f o r m a t i o n " i n v o l v e d t h e p a r e n t s ' m u t u a l s u p p o r t o f one a n o t h e r t h r o u g h t h e t i m e a f t e r t h e b i r t h " ( p . 713). The f a t h e r s i n t e r v i e w e d by M c K e e v e r (1981) d i d n o t s e e k o u t s i d e s o u r c e s o f e m o t i o n a l s u p p o r t b u t i n s t e a d r e l i e d on t h e i r w i v e s . To s u m m a r i z e , v a r i o u s g r o u p s o f p e o p l e were i d e n t i f i e d as h e l p f u l d u r i n g t h i s t r a n s i t i o n p e r i o d . R e l a t i v e s were i m p o r t a n t i n p r o v i d i n g e m o t i o n a l as w e l l as p r a c t i c a l s u p p o r t b u t s o m e t i m e s t h e i r own need f o r r e a s s u r a n c e t o o k a t o l l as s u p p o r t e d by o t h e r r e s e a r c h . P a r e n t s u p p o r t g r o u p s were s e l d o m s o u g h t o u t b u t when t h e y were i t was m o t h e r s who us e d them, e s p e c i a l l y a t more c r i t i c a l t i m e s s u c h as h o s p i t a l i z a t i o n s f o r s u r g e r y . B e i n g V i g i l a n t P a r e n t s i n t h i s s t u d y were v i g i l a n t f o r a t l e a s t s e v e r a l weeks a f t e r t h e i n f a n t f i r s t came home f r o m t h e h o s p i t a l . When t h e c h i l d r e n showed o b v i o u s symptoms o f t h e d i s e a s e a c e r t a i n d e g r e e o f w a t c h f u l n e s s was m a i n t a i n e d t h r o u g h o u t t h e t r a n s i t i o n p e r i o d . Use o f t h i s s t r a t e g y by p a r e n t s o f c h i l d r e n w i t h CHD has been r e c o g n i z e d i n a few 164 o t h e r s t u d i e s . However, i t i s u s u a l l y n o t e x p l i c i t l y i d e n t i f i e d as a c o p i n g s t r a t e g y . D ' A n t o n i o ( 1 9 7 6 ) i d e n t i f i e d " w a t c h f u l " as one c a t e g o r y o f m a t e r n a l r e s p o n s e t o c a r d i a c c h i l d r e n . T h i s w a t c h f u l r e s p o n s e was t h e one most o f t e n i d e n t i f i e d when th e c h i l d r e n were e i t h e r e n g a g i n g i n m o t o r a c t i v i t i e s o r s l e e p i n g . Those c h i l d r e n o f t e n had weak c r i e s as i n f a n t s so t h e m o t h e r s f e l t t h e y had t o w a t c h them more c l o s e l y d u r i n g a c t i v i t y b e c a u s e i f t h e y i n j u r e d t h e m s e l v e s t h e m o t h e r s m i g h t n o t h e a r them. S i m i l a r l y , H o l a d a y ( 1 9 8 1 ) f o u n d t h a t m o t h e r s k e p t t h e i r c h r o n i c a l l y - i l l i n f a n t s w i t h i n v i s u a l r a n g e most o f t h e t i m e so t h a t t h e y c o u l d more e a s i l y i n t e r p r e t t h e i r o f t e n weak c r i e s and a l s o r e s p o n d t o them q u i c k l y . P a r e n t s i n t h e p r e s e n t s t u d y were p a r t i c u l a r l y w a t c h f u l a t n i g h t . Some o f t h e i n f a n t s s l e p t i n t h e p a r e n t s ' rooms and t h e y a l l t a l k e d a b o u t f r e q u e n t l y c h e c k i n g on t h e i r b a b i e s . D ' A n t o n i o ( 1 9 7 6 ) r e p o r t e d t h a t when t h e c h i l d r e n were i n f a n t s t h e y had a l l s l e p t r i g h t n e x t t o t h e p a r e n t s ' b e d s . M o t h e r s i n t h a t s t u d y s t a t e d t h a t t h e y had t o l i s t e n f o r t h e i n f a n t s ' b r e a t h i n g and t h e r e f o r e g o t l i t t l e s l e e p a t n i g h t . T h i s v i g i l a n c e a t n i g h t was a l s o r e p o r t e d by M a x w e l l & Gane ( 1 9 6 2 ) . Most o f t h e c h i l d r e n i n t h a t s t u d y were n o t i n f a n t s b u t 14% of c h i l d r e n s h a r e d t h e p a r e n t a l bed and 64% o f p a r e n t s c h e c k e d on t h e i r c h i l d r e n a t n i g h t . D u n n i n g ( 1 9 8 4 ) r e p o r t e d t h a t 9% o f p a r e n t s a l w a y s had t h e i r 165 c h i l d r e n s l e e p w i t h them w h i l e a n o t h e r 3 3 % had t h e i r c h i l d r e n s l e e p w i t h them s o m e t i m e s o r f r e q u e n t l y . T h i s i n v e s t i g a t o r q u e s t i o n e d w h e t h e r i n f a c t t h e s e w a t c h f u l b e h a v i o u r s were t h a t d i f f e r e n t f r o m t h o s e f o u n d i n f a m i l i e s w i t h h e a l t h y c h i l d r e n . The p a r e n t s i n t h e c u r r e n t s t u d y who had a n o t h e r c h i l d d i d s t a t e t h a t t h e y had n o t c h e c k e d on t h a t c h i l d as much as t h e y had t h e i l l c h i l d . D u n n i n g ( 1 9 8 4 ) s u p p o r t e d t h i s f i n d i n g when she s a i d , " m o t h e r s o f t h e c h i l d r e n i n t h e s t u d y who were n o t f i r s t b o r n d i d comment t h a t t h e y were much more a t t e n t i v e t o t h e i l l i n f a n t t h a n t h e i r n o r m a l i n f a n t , ' u n t i l we g o t u s e d t o h i m / h e r ' " ( p . 6 8 ) . The a n x i e t y o f p a r e n t s and use o f v i g i l a n c e i n t h e c u r r e n t s t u d y was a l s o e v i d e n t i n t h e i r r e l u c t a n c e t o l e a v e t h e c h i l d r e n w i t h b a b y s i t t e r s o t h e r t h a n f a m i l y members. A c o u p l e o f o t h e r s t u d i e s c o r r o b o r a t e t h i s f i n d i n g . F o r t y - f i v e p e r c e n t o f D u n n i n g ' s ( 1 9 8 4 ) s a m p l e s e l d o m l e f t t h e i r c h i l d r e n i n t h e c a r e o f a n o t h e r p e r s o n . O n l y 16% o f t h e M a x w e l l & Gane ( 1 9 6 2 ) s a m p l e s h a r e d t h e c a r e o f t h e i r c h i l d r e n w i t h o t h e r t h a n " i n t i m a t e " f a m i l y . To s u m m a r i z e , a l l p a r e n t s were v i g i l a n t when t h e i n f a n t was f i r s t home and some c o n t i n u e d t o use t h i s s t r a t e g y o v e r t h e l o n g t e r m b e c a u s e t h e i r i n f a n t s had o b v i o u s symptoms o f t h e d i s e a s e . By b e i n g v i g i l a n t p a r e n t s c o u l d r e d u c e t h e i r a n x i e t y b u t f r u s t r a t i o n r e s u l t e d when t h e y c o n t i n u e d t h i s v i g i l a n c e f o r a l o n g p e r i o d o f t i m e . 166 N o r m a l i z i n g H a v i n g l i f e " a s n o r m a l as p o s s i b l e " f o r t h e c h i l d w i t h CHD and h a v i n g l i f e " a s n o r m a l as p o s s i b l e " f o r t h e f a m i l y a s a w h o l e was i m p o r t a n t t o t h o s e p a r e n t s i n t h e c u r r e n t s t u d y . T h e i r s u c c e s s i n a t t a i n i n g t h i s t w o - p r o n g e d g o a l was m a i n l y d e p e n d e n t on t h e c o n d i t i o n and t e m p e r a m e n t o f t h e c h i l d . D e f i n i t i o n s o f n o r m a l v a r i e d f r o m one f a m i l y t o t h e n e x t b u t t h o s e who a l r e a d y had a n o t h e r c h i l d u s e d t h a t c h i l d as a y a r d s t i c k a g a i n s t w h i c h t o m e a s u r e t h e i l l c h i l d ' s p r o g r e s s . A f e w o t h e r s t u d i e s o f f a m i l i e s h a v i n g c h i l d r e n w i t h CHD m e n t i o n e d t h e i m p o r t a n c e o f t h i s s t r a t e g y . G l a s e r e t a l . ( 1 9 6 4 ) r e p o r t e d t h a t a p p r o x i m a t e l y 16 o f 25 m o t h e r s e x p r e s s e d a hope t h a t t h e i r c h i l d r e n w o u l d l e a d " n o r m a l " l i v e s . H o w e v e r , a l l b u t one o f t h e s e m o t h e r s t r e a t e d t h e i l l c h i l d d i f f e r e n t l y t h a n s i b l i n g s e s p e c i a l l y w i t h r e s p e c t t o d i s c i p l i n e . D u n n i n g ' s ( 1 9 8 4 ) o v e r a l l r e s u l t s a r e u n c l e a r w i t h r e g a r d t o n o r m a l i z i n g . She d o e s s a y t h o u g h t h a t 10 o f 14 c h i l d r e n d i a g n o s e d w i t h a v e n t r i c u l a r s e p t a l d e f e c t w e r e r e p o r t e d l y t r e a t e d " a s n o r m a l " by t h e i r p a r e n t s . T h o s e c h i l d r e n s ' c a r d i o l o g i s t s had s u g g e s t e d t h a t t h e y be t r e a t e d " a s n o r m a l " and s i n c e t h e y l o o k e d and a c t e d n o r m a l l y t h e p a r e n t s w e r e a b l e t o f o l l o w t h r o u g h w i t h t h i s a d v i c e . C o m a r o f f & M a g u i r e ( 1 9 8 1 ) d e s c r i b e d t h e d i l e m m a p a r e n t s f a c e when t h e y a r e t o l d by t h e p h y s i c i a n t o t r e a t t h e c h i l d " a s n o r m a l " b u t t h e y know t h a t t h e c h i l d may n o t 167 l i v e t o a d u l t h o o d and i n t h a t c a s e , what w i l l i t m a t t e r t h a t h i s / h e r s o c i a l i z a t i o n was l e s s t h a n n o r m a l . The c h i l d r e n w i t h l e u k e m i a i n t h a t s t u d y o f t e n d i d n o t behave "as n o r m a l " due t o e i t h e r t h e d i s e a s e a n d / o r i t s t r e a t m e n t and t h i s added a n o t h e r d i m e n s i o n t o t h e d i l e m m a . S i m i l a r l y , i n f a n t s w i t h c a r d i a c d e f e c t s o f t e n do n o t behave "as n o r m a l " b u t i n s t e a d a r e i r r i t a b l e o r l e t h a r g i c m a k i n g i t d i f f i c u l t f o r p a r e n t s t o t r e a t them "as n o r m a l . " To f u r t h e r c o m p l i c a t e t h e i s s u e , p a r e n t s i n t h e c u r r e n t s t u d y were t o l d o f symptoms t o w a t c h f o r , a l s o i n d i c a t i n g t h a t t h e i r c h i l d was n o t n o r m a l . The p a r e n t s g e n e r a l l y f e l t t h a t i t was i m p o r t a n t t o t r y t o n o r m a l i z e t h e c h i l d ' s l i f e e s p e c i a l l y when t h e y r e a l i z e d t h a t h e / s h e w o u l d be v i r t u a l l y h e a l t h y a f t e r t h e c o r r e c t i v e s u r g e r y . P a r e n t s w o r ked a r o u n d t h i s d i l e m m a by w a t c h i n g t h e i r c h i l d r e n c l o s e l y when f i r s t home and t h e n e v e n t u a l l y t r e a t i n g them "as n o r m a l as p o s s i b l e " g i v e n t h e i r c o n d i t i o n s and t e m p e r a m e n t s . I f n e c e s s a r y , p a r e n t s r e d e f i n e d n o r m a l t o d e c r e a s e t h e f r u s t r a t i o n t h e y f e l t i n n o t c o m i n g c l o s e t o t h e i r p r e v i o u s d e f i n i t i o n s o f n o r m a l . A n d e r s o n ( 1 9 8 1 ) d i d an e t h n o g r a p h i c s t u d y o f f o u r f a m i l i e s , e a c h h a v i n g a c h r o n i c a l l y - i l l c h i l d b e t w e e n t h e ages o f 3-12 y e a r s . A l l o f t h e s e c h i l d r e n were t r e a t e d "as n o r m a l " a c c o r d i n g t o t h e p a r e n t s , h o w e v e r , i n o b s e r v i n g f a m i l y i n t e r a c t i o n s A n d e r s o n ( 1 9 8 1 ) f o u n d i n c o n s i s t e n c i e s . P e r h a p s t h e s e f a m i l i e s i n f a c t r e d e f i n e d n o r m a l as some o f t h e f a m i l i e s i n t h e c u r r e n t s t u d y seemed t o do. As a 168 r e s u l t o f t h i s r e d e f i n i t i o n , t h e y were a b l e t o f e e l t h a t t h e y were f o l l o w i n g t h e h e a l t h c a r e p r o f e s s i o n a l s ' a d v i c e to t r e a t t h e c h i l d r e n "as n o r m a l " when i n f a c t t h e y were a c t u a l l y t r e a t i n g t h e c h i l d r e n "as n o r m a l as p o s s i b l e " i n d e f e r e n c e t o t h e i l l n e s s e s . K r u l i k ( 1 9 8 0 ) d e f i n e d n o r m a l i z a t i o n t h e same way as t h e i n v e s t i g a t o r o f t h e c u r r e n t s t u d y has d e f i n e d i t , t h a t i s m e a n i n g "as n o r m a l as p o s s i b l e " v e r s u s "as n o r m a l " as some o t h e r s h a v e d e f i n e d i t . I n h e r s t u d y , K r u l i k ( 1 9 8 0 ) i n t e r v i e w e d 20 m o t h e r s u s i n g a s t r u c t u r e d i n t e r v i e w s c h e d u l e . The c h i l d r e n had c h r o n i c l i f e - t h r e a t e n i n g i l l n e s s e s and r a n g e d i n age f r o m 8-10 y e a r s . The n o r m a l i z i n g t a c t i c s u s e d by t h e s e m o t h e r s were d i r e c t e d a t two t a r g e t s ; t h e f i r s t was a l t e r i n g t h e e n v i r o n m e n t t o c o m p e n s a t e and a c c e p t t h e c h i l d , and t h e s e c o n d was s t r e n g t h e n i n g t h e r e s o u r c e s and c o p i n g a b i l i t i e s o f t h e c h i l d . The p a r e n t s i n t h e c u r r e n t s t u d y who were i n t e n t on e n c o u r a g i n g t h e i r c h i l d ' s p h y s i c a l d e v e l o p m e n t were u s i n g t h i s s e c o n d t a c t i c . B e c a u s e t h e c h i l d r e n were so much y o u n g e r , t h e f i r s t t a c t i c was n o t r e a l l y a p p r o p r i a t e f o r p a r e n t s i n t h i s s t u d y t o u s e . A l t e r i n g t h e i r e x p e c t a t i o n s o f t h e m s e l v e s and t h e i r i l l c h i l d r e n was one t a c t i c u s e d by p a r e n t s i n t h e p r e s e n t s t u d y t o c a r r y o u t t h i s s t r a t e g y o f n o r m a l i z i n g . B u r t o n ( 1 9 7 5 ) a l s o r e p o r t e d use o f t h i s t a c t i c . Many m o t h e r 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 l o w e r e d t h e i r e x p e c t a t i o n s o f t h e m s e l v e s i n t e r m s o f h o u s e w o r k so t h a t t h e y c o u l d 169 p r o p e r l y c a r e f o r t h e c h i l d . A number o f m o t h e r s i n t h e c u r r e n t s t u d y had t o a l t e r t h e mode o f f e e d i n g t h e i r i l l i n f a n t s . By c o n s i d e r i n g b o t t l e f e e d i n g w i t h i n t h e r e a l m o f n o r m a l t h e y were a b l e t o keep t h i s c h a n g e i n p e r s p e c t i v e . A n o t h e r t a c t i c u s e d by p a r e n t s i n t h i s s t u d y was t o f o c u s on t h e more n o r m a l q u a l i t i e s i n t h e i r c h i l d r e n . D r o t a r e t a l . ( 1975 ) a l s o f o u n d t h a t m o t h e r s o f c h i l d r e n w i t h a v a r i e t y o f c o n g e n i t a l a n o m a l i e s e m p h a s i z e d t h e n o r m a l a s p e c t s o f t h e i r i n f a n t s ' d e v e l o p m e n t i n an e f f o r t to p o s i t i v e l y a d a p t t o t h e s i t u a t i o n . I n summary t h e n , p a r e n t s t r i e d t o b a l a n c e t h e i r e f f o r t s t o n o r m a l i ze t h e i l l c h i l d ' s l i f e w h i l e a t t h e same t i m e k e e p i n g f a m i l y l i f e "as n o r m a l as p o s s i b l e . " G e n e r a l l y , t h e c h i l d ' s n e e d s came f i r s t and t h e more s y m p t o m a t i c and demanding t h e c h i l d , t h e l e s s s u c c e s s f u l p a r e n t s were i n e m p l o y i n g e i t h e r p r o n g o f t h i s s t r a t e g y . D e f i n i t i o n s o f n o r m a l i z i n g v a r y i n t h e l i t e r a t u r e b u t when p a r e n t s s a y t h a t t h e y a r e t r e a t i n g t h e i r c h r o n i c a l l y - i l l c h i l d "as n o r m a l " t h e y a r e i n f a c t u s u a l l y t r e a t i n g t h e c h i l d "as n o r m a l as p o s s i b l e " c o n s i d e r i n g t h e r a m i f i c a t i o n s o f t h e d i s e a s e . F o c u s i n g on t h e P r e s e n t T h i s s t r a t e g y was u t i l i z e d by p a r e n t s t o h e l p d e c r e a s e t h e f r u s t r a t i o n a s s o c i a t e d w i t h t h e u n c e r t a i n t y e x p e r i e n c e d t h r o u g h o u t t h e t r a n s i t i o n p e r i o d . By f o c u s i n g on t h e p r e s e n t and n o t l e t t i n g t h o u g h t s o f t h e f u t u r e o v e r w h e l m them t h e p a r e n t s were a b l e t o f e e l some s e n s e o f s t a b i l i t y 170 i n t h e i r d a i l y l i v e s . O t h e r s t u d i e s o f p a r e n t s c o p i n g w i t h a c h r o n i c a l l y - i l l c h i l d r e p o r t use o f t h i s s t r a t e g y . I t was n o t d i s c u s s e d i n any o f t h e s t u d i e s s p e c i f i c t o CHD b u t t h e n most o f them d i d n o t f o c u s on p a r e n t a l c o p i n g . B u r t o n ( 1 9 7 5 ) r e p o r t e d t h a t i n h e r s t u d y , 80% o f m o t h e r s and 76% of f a t h e r 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 " f o u n d t h e b e s t way o f l i v i n g w i t h t h e i l l n e s s was t o t a k e e a c h day as i t came" ( p . 229) and n o t p l a n o r t h i n k a b o u t t h e f u t u r e . She e x p l a i n e d t h a t t h i s s t r a t e g y " p r e v e n t s t h e g r o w t h o f u n r e a l i s t i c e x p e c t a t i o n s w h i c h b o t h c o n t r i b u t e t o u l t i m a t e d i s a p p o i n t m e n t and p r e c l u d e t h e e n j o y m e n t o f l e s s e r t h i n g s " ( p . 2 2 8 ) . The same a p p r o a c h was d e s c r i b e d i n a n o t h e r s t u d y o f f a m i l i e s h a v i n g 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 ( V e n t e r s , 1 9 8 1 ) . P a r e n t s i n t h a t s t u d y s t a t e d t h a t t h i s a p p r o a c h t o l i f e a l l o w e d them t o r e l a x more and n o t w o r r y so much a b o u t t h e f u t u r e . C o m a r o f f & M a g u i r e ( 1 9 8 1 ) f o u n d t h a t o n c o l o g i s t s a c t u a l l y s u g g e s t e d t h a t p a r e n t s use t h i s s t r a t e g y t o d i f f u s e t h e i r f o c u s on t h e m e d i c a l u n c e r t a i n t i e s i n h e r e n t i n t h e t r e a t m e n t o f l e u k e m i a . I n t h e c u r r e n t s t u d y , one c o u p l e i d e n t i f i e d t h a t t h e y had a l w a y s a p p r o a c h e d l i f e t h i s way b u t some o f t h e o t h e r s seemed t o have a d o p t e d t h i s s t r a t e g y t o d e a l w i t h t h i s s p e c i f i c t r a n s i t i o n p e r i o d . The k n o w l e d g e t h a t t h e i r c h i l d r e n had t o e v e n t u a l l y u n d e r g o c o r r e c t i v e h e a r t s u r g e r y was o f p a r a m o u n t c o n c e r n . However, t h e y c o u l d n o t l e t t h e i r a n x i e t y a b o u t t h a t e v e n t t a k e o v e r t h e i r l i v e s so 171 t h e y t r i e d n o t t o t h i n k a b o u t i t u n t i l c l o s e t o t h e a n t i c i p a t e d d a t e . A n t i c i p a t i n g t h e F u t u r e A t t i m e s , " f o c u s i n g on t h e p r e s e n t " was n o t h e l p f u l and p a r e n t s n e eded t o a n t i c i p a t e t h e f u t u r e i n o r d e r t o r e d u c e u n c e r t a i n t y and p r e p a r e f o r a n t i c i p a t e d e v e n t s . Two t a c t i c s , i m p o r t a n t t o a n t i c i p a t i n g t h e f u t u r e , were s e e k i n g i n f o r m a t i o n f r o m a v a r i e t y o f s o u r c e s and r e f l e c t i n g on p a s t e x p e r i e n c e s . I n t h i s s t u d y , a p a r e n t ' s u n d e r s t a n d i n g o f t h e d i a g n o s i s was e n h a n c e d when c o n c r e t e d r a w i n g s and p i c t u r e s were u s e d as an a d j u n c t t o t h e v e r b a l e x p l a n a t i o n s . T h i s was a common f i n d i n g i n a s t u d y by K u p s t e t a l . ( 1 9 7 6 ) . P a r e n t s who were a s k e d what w o u l d i m p r o v e c o m m u n i c a t i o n , s u g g e s t e d a w r i t t e n summary o f t h e c h i l d ' s h e a r t c o n d i t i o n as w e l l as a d i a g r a m o f t h e h e a r t . P a r e n t 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 s u g g e s t e d i t w o u l d have been h e l p f u l to have f o l l o w - u p v i s i t s w i t h t h e s p e c i a l i s t t o a s k t h e q u e s t i o n s t h a t p a r e n t s t h o u g h t o f i n t h e i n t e r i m ( B u r t o n , 1 9 7 5 ) . I n a l a t t e r s t u d y , K u p s t e t a l . ( 1 9 7 7 ) , f o u n d t h a t p a r e n t s who were g i v e n p s y c h o l o g i c a l s u p p o r t by a s o c i a l w o r k e r a f t e r s e e i n g t h e c a r d i o l o g i s t , " r a i s e d s i g n i f i c a n t l y more q u e s t i o n s a b o u t d i a g n o s i s and p r o g n o s i s " ( p . 271) on f o l l o w - u p t h a n t h o s e who were n o t g i v e n t h i s t y p e o f s u p p o r t . T h i s a c t i v e s e a r c h f o r i n f o r m a t i o n was v i e w e d as a p o s i t i v e t a c t i c i n t h e p a r e n t s ' a t t e m p t s t o cope w i t h t h e s i t u a t i o n . I n t h e c u r r e n t s t u d y , one m o t h e r who was 172 o f f e r e d a c c e s s t o a p s y c h o l o g i s t , a p a r e n t s u p p o r t g r o u p , and books and p a m p h l e t s , a c t i v e l y u s e d a l l o f t h e s e r e s o u r c e s . G e n e r a l l y , p a r e n t s u s e d t h e r e s o u r c e s o f f e r e d to them and many a l s o l o o k e d t o t h e m e d i a and t h e i r s o c i a l s u p p o r t n e t w o r k f o r i n f o r m a t i o n . E a s y a c c e s s t o a c c u r a t e s o u r c e s o f i n f o r m a t i o n i s v e r y i m p o r t a n t b e c a u s e o t h e r w i s e p a r e n t s may s e e k i n f o r m a t i o n f r o m i n a c c u r a t e s o u r c e s a n d / o r r e m a i n u n c e r t a i n a b o u t t h e i m p l i c a t i o n s o f t h e d i a g n o s i s . A d e s i r e f o r a c o m p l e t e and h o n e s t d i s c u s s i o n o f t h e i m p l i c a t i o n s o f t h e d i a g n o s i s w h i c h t h e p a r e n t s i n t h e c u r r e n t s t u d y e x p r e s s e d was e c h o e d by p a r e n t s h a v i n g 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 i n B u r t o n ' s s t u d y ( 1 9 7 5 ) . Those p a r e n t s e x p l a i n e d t h a t k n o w i n g t h e t r u t h h e l p e d them s t a r t t o a c c e p t t h e d i a g n o s i s o f c y s t i c f i b r o s i s r i g h t away and s a v e d e x t r a u n n e c e s s a r y w o r r y w h i c h r e s u l t e d f r o m u n c e r t a i n t y . D u n n i n g ' s s t u d y ( 1 9 8 4 ) i n c l u d e d an i n t e r v e n t i o n o f t e a c h i n g and s u p p o r t . T h i s i n t e r v e n t i o n was r a t e d as h e l p f u l by 50 o f 56 p a r e n t s and many c i t e d t h a t i t g ave them a c l e a r e r u n d e r s t a n d i n g o f t h e c o n d i t i o n and i t s e f f e c t s . T h i r t e e n o f t h o s e p a r e n t s s u g g e s t e d t h a t s u c h a p r o g r a m w o u l d have been more h e l p f u l a t t h e t i m e o f d i a g n o s i s o r when t h e c h i l d was an i n f a n t . When m o t h e r s i n P i n e l l i ' s s t u d y ( 1 9 8 1 ) were a s k e d t o " i d e n t i f y t h e ways i n w h i c h h o s p i t a l s t a f f c o u l d have h e l p e d them a d j u s t t o t h e b a b y ' s h e a r t c o n d i t i o n " ( p . 2 6 7 ) , n i n e r e s p o n s e s i n d i c a t e d t h a t s t a f f s h o u l d e x p l a i n e v e r y t h i n g and answer m o t h e r s ' q u e s t i o n s . T h u s , p a r e n t s g e n e r a l l y want t o know t h e t r u t h 173 a b o u t t h e i r c h i l d ' s c o n d i t i o n r i g h t f r o m t h e s t a r t so t h e y c a n a n t i c i p a t e o c c u r r e n c e s s u c h as s l o w g r o w t h , d e v e l o p m e n t a l d e l a y s , and s p e c i f i c symptoms o f t h e d i s e a s e and t h e r e f o r e p r e p a r e t h e m s e l v e s f o r t h e s e e v e n t u a l i t i e s . P a r e n t s i n t h i s s t u d y whose c h i l d r e n u n d e r w e n t p a l l i a t i v e s u r g e r y were n o t c o n s i s t e n t l y p r e p a r e d f o r t h e ICU e n v i r o n m e n t , i n c l u d i n g t h e a p p e a r a n c e o f t h e i r c h i l d p o s t - o p e r a t i v e l y . M i l e s & C a r t e r ( 1 9 8 5 ) r e p o r t e d t h a t t h e most f r e q u e n t l y n e g l e c t e d n u r s i n g i n t e r v e n t i o n i n t h e i r s t u d y was an o r i e n t a t i o n t o t h e ICU e n v i r o n m e n t . However, t h i s i n t e r v e n t i o n was o n l y v i e w e d as v e r y o r e x t r e m e l y h e l p f u l by 6 1 % o f p a r e n t s . T h e r e f o r e , t h e q u e s t i o n a r i s e s as t o what t y p e o f o r i e n t a t i o n i s a c t u a l l y h e l p f u l t o p a r e n t s . I n t h e c u r r e n t s t u d y , t h e p a r e n t s d i d want t o be o r i e n t e d t o t h e ICU e n v i r o n m e n t and p r e p a r e d f o r t h e a p p e a r a n c e o f t h e i r c h i l d by a k n o w l e d g e a b l e h e a l t h c a r e p r o f e s s i o n a l . F a t h e r s i n t h e c u r r e n t s t u d y were p a r t i c u l a r l y c o n c e r n e d w i t h b e i n g a b l e t o a n t i c i p a t e t h e i r c h i l d ' s f u t u r e a f t e r t h e c o r r e c t i v e s u r g e r y . Two o t h e r s t u d i e s m e n t i o n e d t h i s as a c o n c e r n o f f a t h e r s . D u n n i n g ( 1 9 8 4 ) r e p o r t e d t h a t 4 o f 28 f a t h e r s were w o r r i e d a b o u t t h e r e s u l t s o f s u r g e r y . M c K e e v e r ( 1 9 8 1 ) who i n t e r v i e w e d o n l y f a t h e r s f o u n d t h a t t h e m a j o r i t y were c o n c e r n e d a b o u t t h e a b i l i t y o f t h e i r c h i l d r e n t o s u r v i v e as i n d e p e n d e n t a d u l t s . T h i s f u t u r e o r i e n t a t i o n may be a s s o c i a t e d w i t h t h e f a t h e r ' s u s u a l r o l e as p r i m a r y w a g e - e a r n e r o f t h e f a m i l y . A l s o , t h e 174 f a t h e r s i n the c u r r e n t s t u d y seemed not to i d e n t i f y as much w i t h how i t might be f o r the c h i l d i n the immediate p o s t - o p e r a t i v e phase p e r h a p s b e c a u s e t h e y were n o t the p r i m a r y c a r e g i v e r s o r b e c a u s e men sometimes have more d i f f i c u l t y e x p r e s s i n g e m o t i o n . R e f l e c t i n g on p r e v i o u s e x p e r i e n c e s was a se c o n d t a c t i c used by p a r e n t s i n the c u r r e n t s t u d y to a c c u r a t e l y a n t i c i p a t e the f u t u r e . A l t h o u g h t h i s i s a l l u d e d to i n many o f the q u a l i t a t i v e s t u d i e s r e v i e w e d , i t i s n o t e x p l i c i t l y s t a t e d as a t a c t i c . To summarize, when a d i a g n o s i s o f CHD was f i r s t made p a r e n t s t r i e d to a n t i c i p a t e the f u t u r e by s e e k i n g i n f o r m a t i o n from a v a r i e t y o f s o u r c e s about the c o u r s e o f the i l l n e s s . The r e s e a r c h l i t e r a t u r e s u p p o r t e d the f i n d i n g t h a t p a r e n t s g e n e r a l l y want to know the i m p l i c a t i o n s o f t h e d i a g n o s i s , n o t o n l y o f CHD but a l s o o f o t h e r c h r o n i c i l l n e s s e s . When a c h i l d was h o s p i t a l i z e d f o r p a l l i a t i v e s u r g e r y t h e p a r e n t s needed i n f o r m a t i o n w h i c h would h e l p them to a n t i c i p a t e the a p p e a r a n c e o f t h e i r c h i l d p o s t - o p e r a t i v e l y and the ICU e n v i r o n m e n t . F a t h e r s were p a r t i c u l a r l y i n t e r e s t e d i n a n t i c i p a t i n g t h e i r c h i l d ' s f u t u r e a f t e r c o r r e c t i v e s u r g e r y . B e i n g H o p e f u l V e r y l i t t l e r e f e r e n c e to t h i s c o p i n g s t r a t e g y o f " b e i n g h o p e f u l " was fo u n d i n the r e s e a r c h s p e c i f i c to f a m i l i e s h a v i n g c h i l d r e n w i t h CHD, however, i t was r e f e r r e d to f r e q u e n t l y i n the g e n e r a l c h r o n i c i l l n e s s s t u d i e s . 175 A g a i n , t h i s p r o b a b l y r e f l e c t s t h e f a c t t h a t most o f t h e s p e c i f i c s t u d i e s d i d n o t f o c u s on p a r e n t a l c o p i n g . One s t u d y w h i c h p r o v i d e s s u b s t a n t i a l c o r r o b o r a t i o n f o r t h e use o f t h i s s t r a t e g y by f a m i l i e s h a v i n g c h r o n i c a l l y - i l l c h i l d r e n was c o n d u c t e d by W r i g h t and S h o n t z ( 1 9 6 8 ) . They t a p e d i n t e r v i e w s w i t h p a r e n t s , t e a c h e r s and t h e r a p i s t s o f 14 c r i p p l e d c h i l d r e n . R e a l i t y s u r v e i l l a n c e was t h e t e r m t h e y u s e d t o d e s c r i b e t h e s e a r c h f o r a r e a l i s t i c b a s e f o r " b e i n g h o p e f u l . " They e m p h a s i z e d i t i s most i m p o r t a n t f o r t h e p e r s o n t o b e l i e v e "he has g r o u n d s on w h i c h t o r e s t h i s h o p e s " and " n o t t h e i s s u e o f w h e t h e r t h e p e r s o n i s a c t u a l l y b e i n g r e a l i s t i c " ( p . 3 2 6 ) . From t h e d a t a t h e y i d e n t i f i e d m ethods f o r a c h i e v i n g r e a l i t y g r o u n d i n g . O n l y t h o s e m ethods w h i c h were a l s o s u b s t a n t i a t e d i n t h e c u r r e n t s t u d y w i l l be d i s c u s s e d h e r e . What t h e i n v e s t i g a t o r o f t h i s s t u d y has c a l l e d " r e a s s u r a n c e f r o m f r i e n d s , r e l a t i v e s and h e a l t h c a r e p r o f e s s i o n a l s , " W r i g h t & S h o n t z ( 1 9 6 8 ) have te r m e d " c o n s e n s u a l v a l i d a t i o n . " The " f i r s t - h a n d e x p e r i e n c e " c i t e d i n t h e c u r r e n t s t u d y w o u l d be i n c l u d e d u n d e r t h e i r c a t e g o r y o f " e n v i r o n m e n t a l c o n d i t i o n s " ( W r i g h t & S h o n t z , 1 9 6 8 ) . A g r o u n d s f o r hope e n t i t l e d " c h i l d ' s p r o g r e s s t o d a t e b e t t e r t h a n e x p e c t e d " w o u l d be subsumed u n d e r t h e W r i g h t & S h o n t z ( 1 9 6 8 ) c a t e g o r y o f " a s s e t s o f t h e c h i l d . " A c h i l d ' s c o n t i n u i n g p r o g r e s s was a l s o c i t e d as a s o u r c e o f hope f o r p a r e n t 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 ( B u r t o n , 1 9 7 5 ) . 176 Common r e l i a n c e on a g r o u n d s f o r hope c a l l e d " c o m p a r i s o n s t o t h o s e who a r e w o r s e o f f " was s u p p o r t e d by s e v e r a l s t u d i e s . W r i g h t and S h o n t z ( 1 9 6 8 ) e n t i t l e t h i s " g r o u p c o m p a r i s o n . " B u r t o n ( 1 9 7 5 ) s t a t e s t h a t s u c h c o m p a r i s o n s h e l p e d t h e p a r e n t s " d e v e l o p a s e n s e o f p e r s p e c t i v e " ( p . 2 2 5 ) . I n a n o t h e r s t u d y o f p a r e n t 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 , V e n t e r s ( 1 9 8 1 ) r e p o r t e d t h a t s u c h c o m p a r i s o n s were o f t e n made when t h e c h i l d r e n were h o s p i t a l i z e d and t h e p a r e n t s c o u l d r e a d i l y f i n d o t h e r s who were w o r s e o f f . T h i s was a l s o t r u e i n t h e c u r r e n t s t u d y . A f i f t h g r o u n d s f o r hope i d e n t i f i e d i n t h e c u r r e n t s t u d y was " t h i n k i n g a b o u t i m p r o v e m e n t s i n c h i l d ' s c o n d i t i o n a f t e r s u r g e r y . " T h i s was q u i t e s p e c i f i c t o CHD and t h e r e f o r e no r e f e r e n c e was f o u n d i n t h e g e n e r a l c h r o n i c i l l n e s s l i t e r a t u r e . G a r s o n e t a l . ( 1 9 7 8 ) d i d however c o n c u r t h a t p a r e n t s o f c h i l d r e n who show o b v i o u s symptoms o f CHD have a l l t h e i r hopes i n v e s t e d i n s u r g e r y and l o o k f o r w a r d t o "a c h a n g e i n t h e p r e s e n t c o n d i t i o n " ( p . 9 0 ) . The f i n a l g r o u n d s f o r hope was f o u n d i n p o s t u l a t i n g t h a t t h e e x p e r i e n c e w o u l d have some o v e r a l l p o s i t i v e r e p e r c u s s i o n s f o r t h e i r f a m i l i e s . A g a i n , t h e two s t u d i e s o f f a m i l i e s h a v i n g 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 s u p p o r t e d t h i s as a g r o u n d s f o r h ope. B u r t o n ( 1 9 7 5 ) s t a t e d , " t h e p a r e n t s ' a d a p t a t i o n t o t h e i l l n e s s was g r e a t l y e a s e d where t h e y were a b l e t o see some p o s i t i v e r e a s o n f o r i t s o c c u r r e n c e " ( p . 2 2 7 ) . One e x a m p l e o f a p o s i t i v e r e a s o n was t h e f a c t t h a t 64% of m o t h e r s and 53% o f f a t h e r s f e l t t h a t 177 t h e e x p e r i e n c e had drawn them c l o s e r t o g e t h e r . T h i s p o s i t i v e r e a s o n was a l s o c i t e d by a c o u p l e o f p a r e n t s i n t h e c u r r e n t s t u d y . V e n t e r s ( 1 9 8 1 ) f o u n d t h a t when p a r e n t s endowed t h e i l l n e s s w i t h a more p o s i t i v e t h a n n e g a t i v e m e a n i n g , t h i s was a s s o c i a t e d w i t h a h i g h e r l e v e l o f f a m i l y f u n c t i o n i n g . A l s o , she e x p l a i n s , " t h o s e s t u d y p a r e n t s who d e m o n s t r a t e d o p t i m i s m f o u n d a r e a s o n f o r c o n f i d e n c e i n t h e p r e s e n t and hope f o r t h e f u t u r e " ( p . 2 9 4 ) . I n t h e c u r r e n t s t u d y m a i n t a i n i n g an o p t i m i s t i c o u t l o o k was u s u a l l y p o s s i b l e when p a r e n t s f o u n d g r o u n d s f o r ho p e . To s u m m a r i z e , " b e i n g h o p e f u l " was a s t r a t e g y e m p l o y e d by a l l p a r e n t s and t h e y f o u n d v a r i o u s g r o u n d s f o r hope w h i c h e n a b l e d them t o b e l i e v e t h a t t h e i r hope was b a s e d i n r e a l i t y . Use o f t h i s s t r a t e g y by p a r e n t s o f c h i l d r e n w i t h a v a r i e t y o f c h r o n i c i l l n e s s e s was s u p p o r t e d by e m p i r i c a l d a t a . When a c h i l d i s c h r o n i c a l l y i l l t h e p a r e n t s must f i n d some r e a s o n t o hope o t h e r w i s e t h e y w o u l d have d i f f i c u l t y m a i n t a i n i n g a d e g r e e o f o p t i m i s m and f u n c t i o n i n g on a d a i l y b a s i s . O v e r a l l I m p r e s s i o n o f E x p e r i e n c e I n r e c a l l i n g t h e i r o v e r a l l e x p e r i e n c e o f h a v i n g a c h i l d a w a i t i n g c o r r e c t i v e h e a r t s u r g e r y , t h e m a j o r i t y o f p a r e n t s were more p o s i t i v e t h a n n e g a t i v e . Some c o m b i n a t i o n o f t h e f o l l o w i n g f a c t o r s c o n t r i b u t e d t o t h e o p t i m i s m d i s p l a y e d by e a c h o f t h e s e p a r e n t s : e x p e r i e n c e n o t as bad as i n i t i a l l y e x p e c t e d ; c h i l d p r o g r e s s i n g w e l l a t t i m e o f i n t e r v i e w ; s u r g e r y e i t h e r n o t a n t i c i p a t e d s o o n o r i f 178 a n t i c i p a t e d , p a r e n t s n o t aware o f o r c o n c e r n e d a b o u t r i s k s ; p a r e n t s have g e n e r a l l y p o s i t i v e o u t l o o k on l i f e ; and p a r e n t s use c o p i n g s t r a t e g i e s w h i c h h e l p t o m a i n t a i n an o p t i m i s t i c o u t l o o k s u c h as " n o r m a l i z i n g , " " b e i n g h o p e f u l , " and " t r u s t i n g h e a l t h c a r e p r o f e s s i o n a l s . " A p o s i t i v e o v e r a l l i m p r e s s i o n d i d n o t s i g n i f y t h a t t h e w h o l e e x p e r i e n c e was w i t h o u t i t s t r i a l s . I n f a c t , a l l p a r e n t s r e c o u n t e d t h a t t h e two f a c e t s o f " d i a g n o s i s o f CHD" and " a d j u s t i n g t o c a r i n g f o r c h i l d o nce home" were a t l e a s t somewhat s t r e s s f u l . T h i s p o s i t i v e o v e r a l l i m p r e s s i o n o f t h e e x p e r i e n c e was n o t c o r r o b o r a t e d w i t h any o t h e r e m p i r i c a l d a t a . I n f a c t , a few i n v e s t i g a t o r s h ave c o n c l u d e d , f r o m d a t a a b o u t s p e c i f i c a s p e c t s , t h a t t h e o v e r a l l e x p e r i e n c e i s a v e r y n e g a t i v e o n e . D ' A n t o n i o ( 1 9 7 6 ) , f o r e x a m p l e , had t h i s t o s a y : F a m i l y l i f e a p p e a r e d t o r e v o l v e a r o u n d t h e c a r d i a c c h i l d . The n e e d s o f o t h e r f a m i l y members were s e c o n d a r y t o t h e n e e d s o r w a n t s o f t h e c a r d i a c c h i l d . S t r e s s e s r e s u l t e d b e c a u s e t h e f a m i l y , and i n p a r t i c u l a r t h e m o t h e r was t r a p p e d w i t h a c h i l d w i t h a c o n g e n i t a l c a r d i a c a n o m a l i e and t h e c a r d i a c c h i l d was t r a p p e d w i t h i n h i s own d e f e c t i v e b o d y . The h i g h i n c i d e n c e o f d i v o r c e and s e p a r a t i o n b e t w e e n s p o u s e s may be a r e f l e c t i o n o f t h e s t r e s s e s e x p e r i e n c e d by t h e s e f a m i l i e s . ( p . 254) No r e f e r e n c e s were c i t e d t o s u p p o r t h e r s t a t e m e n t a b o u t t h e h i g h i n c i d e n c e o f d i v o r c e and s e p a r a t i o n . Two f a i r l y r e c e n t r e s e a r c h s t u d i e s do i n f a c t c o n t r a d i c t t h i s s t a t e m e n t ( F i n l e y , P u t h e r b o u g h , Cook, N e t l e y , & Rowe, 1979; S i l b e r t , N e w b e r g e r , & F y l e r , 1 9 8 2 ) . B e c a u s e o t h e r s t u d i e s f o c u s e d on s p e c i f i c p a r e n t a l c o n c e r n s and d i d n o t g e n e r a l l y a s k p a r e n t s f o r t h e i r 179 o v e r a l l i m p r e s s i o n , i t c o u l d be t h a t t h e c o n c l u s i o n s r e a c h e d by t h e i n v e s t i g a t o r s a r e s i m i l a r t o t h e c o n c l u s i o n s t h a t many h e a l t h c a r e p r o f e s s i o n a l s w o u l d r e a c h i n t h i n k i n g o f t h e o v e r a l l e x p e r i e n c e as a sum o f a l l t h e s t r e s s f u l a s p e c t s r e c o u n t e d by p a r e n t s . Summary Many o f t h e f i n d i n g s o f t h i s s t u d y h a v e been c o r r o b o r a t e d w i t h e m p i r i c a l d a t a f r o m a v a r i e t y o f r e s e a r c h r e p o r t s . I n t h e f a c e t s s e c t i o n o f t h e e x p e r i e n c e , t h e f i n d i n g s were s u p p o r t e d w i t h l i t e r a t u r e p r i m a r i l y d e a l i n g w i t h f a m i l i e s h a v i n g c h i l d r e n w i t h CHD. A l t h o u g h some s u p p o r t was f o u n d amongst t h e s e s p e c i f i c s t u d i e s , s e v e r a l o f them had m a j o r l i m i t a t i o n s w h i c h must be c o n s i d e r e d . The r e c e n t c o m p r e h e n s i v e s t u d y by D u n n i n g ( 1 9 8 4 ) p r o b a b l y l e n d s t h e most s u p p o r t t o t h e f i n d i n g s o f t h i s s t u d y . G e n e r a l l i t e r a t u r e r e l a t i n g t o f a m i l i e s h a v i n g c h i l d r e n w i t h a v a r i e t y o f c h r o n i c i l l n e s s e s l e n t t h e most s u p p o r t t o t h e c o p i n g s t r a t e g i e s s e c t i o n o f t h i s d i s c u s s i o n . The s t u d i e s s p e c i f i c t o CHD had l e s s t o c o n t r i b u t e , p r o b a b l y b e c a u s e few o f them a c t u a l l y f o c u s e d on p a r e n t a l c o p i n g . S e v e r a l s p e c i f i c f i n d i n g s a r o s e f r o m t h e c u r r e n t s t u d y f o r w h i c h l i m i t e d o r no s u p p o r t was f o u n d i n t h e r e s e a r c h r e p o r t s r e v i e w e d . One o f t h e s e f i n d i n g s was t h a t h a v i n g t o r e p e a t e d l y e x p l a i n t h e i r c h i l d ' s c o n d i t i o n t o r e l a t i v e s , f r i e n d s and e v e n s t r a n g e r s was o f t e n q u i t e s t r e s s f u l f o r p a r e n t s . A s e c o n d f i n d i n g was t h a t t h o s e p a r e n t s who had 180 the most s y m p t o m a t i c and i r r i t a b l e c h i l d r e n had a c l o s e a l l i a n c e w i t h one p a r t i c u l a r h e a l t h c a r e p r o f e s s i o n a l . A t h i r d f i n d i n g was t h a t h e a r t c a t h e t e r i z a t i o n s were g e n e r a l l y v i e w e d p o s i t i v e l y b e c a u s e the i n f o r m a t i o n g a i n e d from t h e s e t e s t s c o u l d d e c r e a s e the u n c e r t a i n t y a b o u t p r o g n o s i s and g u i d e p h y s i c i a n s i n d e c i d i n g about s u r g e r y . A f o u r t h f i n d i n g was t h a t p a r e n t s whose c h i l d r e n had undergone p a l l i a t i v e s u r g e r y d e m o n s t r a t e d more c o n c e r n about the upcoming c o r r e c t i v e s u r g e r y t h a n t h o s e whose c h i l d r e n had n o t . The f i n a l f i n d i n g w h i c h was n o t s u p p o r t e d was t h a t once p a r e n t s were g i v e n a d a t e f o r t h e i r c h i l d ' s c o r r e c t i v e s u r g e r y t h e i r a p p r e h e n s i o n i n c r e a s e d and t h e y s p e n t more time t h i n k i n g about t h a t e v e n t . 181 Foo t n o t e s 1. W a e c h t e r ( 1 9 7 7 ) c o n d u c t e d s e m i - s t r u c t u r e d i n t e r v i e w s w i t h 50 p a r e n t s o f c h i l d r e n w i t h a v a r i e t y o f a n o m a l i e s , i n c l u d i n g c a r d i a c . T h e r e were no d e t a i l s g i v e n a b o u t e i t h e r t h e method o f r e c o r d i n g o r a n a l y z i n g d a t a . I t was a l s o u n c l e a r w h e t h e r any f a t h e r s were i n t e r v i e w e d , h o w e v e r , a l l s p e c i f i c q u o t e s c i t e d were f r o m m o t h e r s ' a c c o u n t s . 2. D a t a f r o m t h e G a r s o n e t a l . ( 1 9 7 8 ) r e p o r t s h o u l d be c o n s i d e r e d w i t h some r e s e r v a t i o n as t h e m e t h o d o l o g y i s o f c o n c e r n . A r e t r o s p e c t i v e a n a l y s i s was done o f t h e r e c o r d s o f w e e k l y i n t e r d i s c i p l i n a r y , u n s t r u c t u r e d m e e t i n g s w i t h a g r o u p o f p a r e n t s a t t e n d i n g a c a r d i o l o g y c l i n i c . A f t e r e a c h s e s s i o n w h i c h u s u a l l y i n c l u d e d a b o u t 10 f a m i l i e s , t h e team met t o " d i s c u s s s p e c i f i c f a m i l i e s and t o c o n c e p t u a l i z e t h e o b s e r v e d b e h a v i o r " ( p . 8 7 ) . A t o t a l o f 260 f a m i l i e s a t t e n d e d t h e s e s s i o n s b u t t h e r e c o r d s i n c l u d e d o n l y t h o s e f a m i l i e s e x e m p l i f y i n g c e r t a i n b e h a v i o u r s . 3. I n t h i s e x p e r i m e n t a l s t u d y ( K u p s t e t a l . , 1 9 7 7 ) , 83 m o t h e r s and 45 f a t h e r s o f 84 c h i l d r e n v i s i t i n g t h e c a r d i a c o u t p a t i e n t s e r v i c e f o r t h e f i r s t t i m e were put i n one o f f o u r g r o u p s . E a c h g r o u p o f f e r e d a d i f f e r e n t i n t e r v e n t i o n s t r a t e g y t o h e l p p a r e n t s cope w i t h t h e i m p l i c a t i o n s o f t h e d i a g n o s i s o f CHD: m e d i c a l i n f o r m a t i o n i n t e r v e n t i o n , p s y c h o l o g i c a l i n t e r v e n t i o n , m e d i c a l / p s y c h o l o g i c a l i n t e r v e n t i o n and a c o n t r o l g r o u p . The e f f e c t i v e n e s s o f t h e s t r a t e g i e s was e v a l u a t e d i m m e d i a t e l y a f t e r and t h e n one month a f t e r . 4. D u n n i n g ( 1 9 8 4 ) e x a m i n e d t h e e f f e c t s o f an i n d i v i d u a l i z e d t e a c h i n g and s u p p o r t p r o g r a m on t h e a n x i e t y o f p a r e n t s h a v i n g c h i l d r e n w i t h CHD. Two s e m i - s t r u c t u r e d i n t e r v i e w s were d o n e , one b e f o r e and one a f t e r t h e p r o g r a m A m o d i f i e d p r e t e s t - p o s t e s t two g r o u p d e s i g n was u s e d w i t h 14 c o u p l e s i n e a c h g r o u p . The d a t a was t a p e - r e c o r d e d d u r i n g t h r e e i n t e r v i e w s w i t h t h e p a r e n t s i n t h e i r homes. 5. D ' A n t o n i o i n t e r v i e w e d t h e m o t h e r s o f 20 p r e s c h o o l e r s w i t h CHD, a s k i n g o pen-ended q u e s t i o n s a b o u t t h e c h i l d i n t h e c h i l d - r e a r i n g s i t u a t i o n s o f e a t i n g , e l i m i n a t i n g , s l e e p i n g and m o t o r a c t i v i t y . The s i n g l e i n t e r v i e w s were n o t a u d i o t a p e d , i n s t e a d n o t e s were t a k e n , w h i c h may h a v e a f f e c t e d t h e r e p r e s e n t a b i l i t y o f t h e d a t a . 6. I n t h e G l a s e r e t a l . s t u d y ( 1 9 6 4 ) , 25 m o t h e r s o f c h i l d r e n f r o m 5-11 y e a r s o f age were i n t e r v i e w e d t o e l i c i t f a m i l y r e a c t i o n s t o t h e c h i l d ' s i l l n e s s . The s p e c i f i c n a t u r e o f t h e q u e s t i o n i n g was n o t r e p o r t e d . 182 7. The e a r l i e s t s t u d y r e v i e w e d , on f a m i l i e s h a v i n g c h i l d r e n w i t h CHD, was c o n d u c t e d i n t h e e a r l y 60's ( M a x w e l l & Gane, 1 9 6 2 ) . I n t h a t s t u d y , a s o c i a l w o r k e r a d m i n i s t e r e d a q u e s t i o n n a i r e t o 150 f a m i l i e s ( ? one o r b o t h p a r e n t s ) e i t h e r a t t h e t i m e o f t h e f i r s t c l i n i c v i s i t o r i n a s u b s e q u e n t v i s i t t o f i n d o u t a b o u t t h e i m p a c t o f CHD upon t h e f a m i l y . 8. P i n e l l i ( 1 9 8 1 ) c o l l e c t e d d a t a a b o u t m o t h e r s ' c o n c e r n s r e g a r d i n g t h e c a r e - t a k i n g t a s k s o f n e w b o r n s w i t h CHD t h r o u g h two s e m i - s t r u e t u r e d i n t e r v i e w s , one p r i o r t o t h e i n f a n t ' s d i s c h a r g e and t h e s e c o n d , one month p o s t - d i s c h a r g e . The l i m i t a t i o n s o f t h i s s t u d y a r e s e v e r a l and a r e w e l l d o c u m e n t e d i n t h e p u b l i s h e d r e p o r t . Most i m p o r t a n t a r e t h e s m a l l s a m p l e s i z e o f 10, and t h e q u e s t i o n a b l e r e l i a b i l i t y and v a l i d i t y o f t h e i n s t r u m e n t s w h i c h were d e v e l o p e d by t h e r e s e a r c h e r . 9. I n t h a t s t u d y 88 m o t h e r s and 54 f a t h e r s o f 88 c h i l d r e n were i n t e r v i e w e d m u l t i p l e t i m e s i n t h e i r homes. " S t a n d a r d q u e s t i o n s h e e t s were u s e d and a s s e s s m e n t s were made on p r e d e t e r m i n e d c r i t e r i a , u s i n g p o i n t - s c a l e s when p o s s i b l e " ( A p l e y e t a l . , 1967, p. 1 0 3 ) . 183 CHAPTER 6 Summary, C o n c l u s i o n s , and I m p l i c a t i o n s f o r N u r s i n g Summary The f a m i l y ' s e x p e r i e n c e o f h a v i n g a c h i l d a w a i t i n g c o r r e c t i v e h e a r t s u r g e r y was e l i c i t e d f r o m t h e p e r s p e c t i v e o f b o t h p a r e n t s i n t h i s s t u d y . A summary o f t h e p r o c e s s f o l l o w e d i n , e l i c i t i n g , a n a l y z i n g , and r e p o r t i n g t h e s e a c c o u n t s w i l l now be p r e s e n t e d . The UBC M o d e l f o r N u r s i n g : The F a m i l y (UBC M o d e l , May/1986) p r o v i d e d t h e t h e o r e t i c a l f r a m e w o r k f o r t h i s r e s e a r c h p r o j e c t . I n t h i s m o d e l , t h e f a m i l y i s c o n c e p t u a l i z e d as a s o c i a l s y s t e m w i t h t h r e e s u b s y s t e m s . " N u r t u r i n g " i s t h e t e r m u s e d t o d e s c r i b e n u r s i n g s ' f u n c t i o n w i t h f a m i l i e s and i s d e f i n e d s i m p l y as t o " f o s t e r ; p r o t e c t ; s u s t a i n ; and t e a c h " (UBC M o d e l , May/86, p. 6 ) . The n u r s e n u r t u r e s f a m i l i e s d u r i n g t r a n s i t i o n p e r i o d s when e x p e c t e d o r u n e x p e c t e d e v e n t s o c c u r . C o n c e p t s d e r i v e d f r o m t h e t h e o r e t i c a l f r a m e w o r k d i r e c t e d t h e l i t e r a t u r e r e v i e w . These i n c l u d e d t h e u n e x p e c t e d e v e n t o f t h e d i a g n o s i s o f CHD, t h e t r a n s i t i o n p e r i o d f r o m i n i t i a l d i a g n o s i s u n t i l a d m i s s i o n t o h o s p i t a l f o r c o r r e c t i v e s u r g e r y and w a i t i n g f o r t h e e x p e c t e d e v e n t o f s u r g e r y . B o t h e x p e r i e n t i a l l y and r e s e a r c h - b a s e d p u b l i c a t i o n s were u s e d t o p l a c e t h i s s t u d y i n t h e c o n t e x t o f what i s g e n e r a l l y known a b o u t f a m i l i e s h a v i n g c h i l d r e n w i t h CHD and a l s o c h i l d r e n w i t h o t h e r c h r o n i c i l l n e s s e s . 184 B e c a u s e t h e i n v e s t i g a t o r w a n t e d t o e x p l o r e t h e e x p e r i e n c e o f f a m i l i e s i n t h e i d e n t i f i e d t r a n s i t i o n p e r i o d t h i s l e d h e r t o c h o o s e t h e p h e n o m e n o l o g i c a l method o f q u a l i t a t i v e r e s e a r c h t o g u i d e h e r s t u d y . T h r o u g h t h i s m e t h o d , t h e i n v e s t i g a t o r was a b l e t o l e a r n how t h e p a r e n t s i n t e r p r e t e d and gave m e a n i n g t o t h e i r f a m i l y ' s e x p e r i e n c e o f h a v i n g a c h i l d a w a i t i n g c o r r e c t i v e h e a r t s u r g e r y . D a t a c o l l e c t i o n and d a t a a n a l y s i s o c c u r r e d c o n c u r r e n t l y u n t i l t h e i n t e r v i e w s were c o m p l e t e d and t h e n t h e f i n a l a n a l y s i s was d o n e . V e r b a t i m t r a n s c r i p t s o f t h e t a p e d i n t e r v i e w s were a n a l y z e d as t h e d a t a c o l l e c t i o n p r o c e e d e d . Themes f r o m t h e f i r s t - r o u n d i n t e r v i e w s were v e r i f i e d w i t h t h e p a r e n t s a t s u b s e q u e n t i n t e r v i e w s and themes f r o m o t h e r p a r e n t s ' a c c o u n t s were a l s o i n t r o d u c e d a t t h a t t i m e f o r d i s c u s s i o n . P a r e n t s were e n c o u r a g e d t o e x p l a i n as f u l l y as p o s s i b l e how t h e y i n t e r p r e t e d and gave m e a n i n g t o f a c e t s o f t h e e x p e r i e n c e . Once t h e i n t e r v i e w s were c o m p l e t e d , f u r t h e r s o r t i n g and c a t e g o r i z i n g o f d a t a t o o k p l a c e . T h r o u g h o u t t h i s p r o c e s s t h e i n v e s t i g a t o r f r e q u e n t l y r e t u r n e d t o t h e o r i g i n a l a c c o u n t s t o e n s u r e t h a t m e a n i n g u n i t s were " c o n t e x t l a d e n " as s u g g e s t e d by G i o r g i ( 1 9 8 5 , p. 1 4 ) . M a j o r themes w h i c h came f r o m t h e a c c o u n t s were o r g a n i z e d i n t o two s e c t i o n s t o e n h a n c e c l a r i t y f o r t h e r e a d e r . The f i r s t s e c t i o n i n c l u d e d t h e f o u r f a c e t s o f t h e e x p e r i e n c e . Two c o n c e p t s a p p a r e n t t h r o u g h a l l f o u r f a c e t s were u n c e r t a i n t y and e x p l a i n i n g . The s e c o n d s e c t i o n 185 subsumed the s e v e n c o p i n g s t r a t e g i e s employed by a l l of t h e p a r e n t s i n t h e i r a t t e m p t s to a t t a i n the g o a l s s p e c i f i c to t h i s t r a n s i t i o n p e r i o d . F o r d i s c u s s i o n p u r p o s e s , the f i n d i n g s o f t h i s s t u d y were compared to the f i n d i n g s o f a v a r i e t y o f o t h e r s t u d i e s , n o t o n l y t h o s e s p e c i f i c to f a m i l i e s h a v i n g c h i l d r e n w i t h CHD, but a l s o t h o s e f o c u s i n g on f a m i l i e s h a v i n g c h i l d r e n w i t h o t h e r c h r o n i c i l l n e s s e s . Most o f the f i n d i n g s were s u p p o r t e d . C o n c l u s i o n s and 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 Some s p e c i f i c c o n c l u s i o n s about the f i n d i n g s o f t h i s s t u d y w i l l be p r e s e n t e d h e r e . A f t e r each c o n c l u s i o n i s d i s c u s s e d , the 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 w h i c h e v o l v e from t h e s e c o n c l u s i o n s w i l l be d e s c r i b e d . These c o n c l u s i o n s have n o t been p r i o r i z e d i n any way as t h e y a r e a l l c o n s i d e r e d i m p o r t a n t . The f i r s t c o n c l u s i o n i s t h a t p a r e n t s who e x p e c t c o r r e c t i v e h e a r t s u r g e r y to o c c u r months and sometimes y e a r s from the time o f the d i a g n o s i s do not spend a l o t o f t i m e a n t i c i p a t i n g t h a t e v e n t . I n s t e a d , t h e y u t i l i z e c o p i n g s t r a t e g i e s s u c h as " f o c u s i n g on the p r e s e n t , " " n o r m a l i z i n g , " and " b e i n g h o p e f u l " to a l l o w them to m a i n t a i n a somewhat o p t i m i s t i c o u t l o o k and g e t on w i t h t h e i r d a i l y l i v e s . O n l y when a d a t e i s s e t f o r the s u r g e r y do p a r e n t s r e a l l y v i e w i t as a r e a l i t y . At t h a t t i m e , t h e i r a p p r e h e n s i o n i n c r e a s e s and c o p i n g s t r a t e g i e s s u c h as 186 " a n t i c i p a t i n g t h e f u t u r e , " " s e e k i n g s u p p o r t , " and " t r u s t i n g h e a l t h c a r e p r o f e s s i o n a l s " become more i m p o r t a n t . The 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 e s e v e r a l . N u r s e s who d e a l w i t h f a m i l i e s t h r o u g h o u t t h e i d e n t i f i e d t r a n s i t i o n p e r i o d s h o u l d n o t d w e l l on t h e c o r r e c t i v e s u r g e r y o r t r y t o i n f o r m p a r e n t s a b o u t t h e e v e n t u n t i l t h e y show t h a t t h e y a r e r e a d y f o r t h i s i n f o r m a t i o n . However, once a d a t e has been i d e n t i f i e d f o r t h e s u r g e r y i t i s a p p r o p r i a t e t o p r e p a r e p a r e n t s f o r t h e e v e n t so t h a t t h e y c a n a c c u r a t e l y " a n t i c i p a t e t h e f u t u r e , " " t r u s t h e a l t h c a r e p r o f e s s i o n a l s " who make an e f f o r t t o keep them i n f o r m e d , and " s e e k t h e s u p p o r t " t h a t t h e y need t o cope w i t h t h i s e v e n t . T h i s p r e p a r a t i o n s h o u l d be m u l t i - f a c e t e d . I n f o r m a t i o n r e l e v a n t t o t h e p a r e n t s ' l e a r n i n g n eeds c o u l d be o f f e r e d by a k n o w l e d g e a b l e n u r s e i n c o n j u n c t i o n w i t h t h e m e d i c a l team. I n a s s e s s i n g t h e i r l e a r n i n g n eeds t h e n u r s e s h o u l d f i n d o u t w h e t h e r o r n o t t h e p a r e n t s p r e v i o u s l y e x p e r i e n c e d t h e ICU e n v i r o n m e n t and i f so what t h e i r i m p r e s s i o n s were o f i t . T h e i r p r e v i o u s e x p e r i e n c e w i l l a f f e c t t h e i r p r e s e n t l e a r n i n g n e e d s . A n u r s i n g a s s e s s m e n t o f t h e f a m i l y ' s s o c i a l s u p p o r t n e t w o r k , i f n o t a l r e a d y done w o u l d be u s e f u l a t t h i s p o i n t i n t i m e . A n y t h i n g n u r s e s c a n do t o e n h a n c e t h e s t r e n g t h o f t h i s n e t w o r k w o u l d be h e l p f u l f o r p a r e n t s , f o r e x a m p l e , e x p l a i n i n g t h e n e c e s s i t y o f s u r g e r y t o r e l a t i v e s and r e a s s u r i n g them so t h e y c a n i n t u r n s u p p o r t t h e p a r e n t s . 187 A s e c o n d c o n c l u s i o n has t o do w i t h t h e u n c e r t a i n t y w h i c h t h e p a r e n t s f e l t t h r o u g h o u t t h e e x p e r i e n c e . U n c e r t a i n t y was g e n e r a l l y a v e r y u n c o m f o r t a b l e f e e l i n g and most p a r e n t s d i d w h a t e v e r t h e y c o u l d t o d e c r e a s e i t , i n c l u d i n g u s i n g w h a t e v e r r e s o u r c e s were made a v a i l a b l e t o them and s e e k i n g o u t o t h e r r e s o u r c e s i f t h e y s t i l l l a c k e d k n o w l e d g e and u n d e r s t a n d i n g . The m a j o r n u r s i n g i m p l i c a t i o n i s t o h e l p e n s u r e t h a t t h e p a r e n t s have e a s y a c c e s s t o t h e r e s o u r c e s t h e y r e q u i r e , i n c l u d i n g w r i t t e n s t a t e m e n t s a b o u t t h e i r c h i l d ' s d i a g n o s i s , p r o g n o s i s and t r e a t m e n t p l a n . P a r e n t s must be g i v e n m u l t i p l e o p p o r t u n i t i e s t o c l a r i f y a n y t h i n g t h e y do n o t u n d e r s t a n d b e c a u s e many f o r c e s may i n t e r f e r e w i t h t h e i r u n d e r s t a n d i n g , i n c l u d i n g : t h e i r i n i t i a l d i s b e l i e f a b o u t t h e d i a g n o s i s , t h e i r a n x i e t y a b o u t t h e c h i l d ' s c o n d i t i o n , and t h e use o f m e d i c a l t e r m s by t h o s e d o i n g t h e e x p l a i n i n g . A n o t h e r n u r s i n g i m p l i c a t i o n i s t o e n c o u r a g e f a m i l i e s t o g e t on w i t h t h e i r n o r m a l d a i l y a c t i v i t i e s and n o t d w e l l on t h e u n c e r t a i n t i e s o f t h e f u t u r e . A f u r t h e r i m p l i c a t i o n i s f o r n u r s e s t o a s s i s t p a r e n t s t o v i e w a c a r d i a c c a t h e t e r i z a t i o n as a p o s i t i v e d i a g n o s t i c t e s t w h i c h has t h e p o t e n t i a l t o answer some o f t h e i r q u e s t i o n s and d e c r e a s e t h e u n c e r t a i n t y t h e y a r e e x p e r i e n c i n g . The t h i r d c o n c l u s i o n i s i n r e l a t i o n t o h a v i n g t o e x p l a i n t h e i r c h i l d ' s c o n d i t i o n t o o t h e r s . P a r e n t s f i n d i t h a r d t o have t o r e p e a t e d l y e x p l a i n t h e i r c h i l d ' s c o n d i t i o n t o t h e p e o p l e a r o u n d them. They g e t f r u s t r a t e d w i t h t h i s 188 demand f o r s e v e r a l r e a s o n s . F i r s t , t h e y may be h a v i n g d i f f i c u l t y u n d e r s t a n d i n g t h e p r o b l e m t h e m s e l v e s , e s p e c i a l l y a t t h e t i m e o f d i a g n o s i s , and t h e r e f o r e have a l o t o f t r o u b l e a r t i c u l a t i n g e x a c t l y what i t i s . S e c o n d l y , i t i s a r e m i n d e r t h a t t h e i r c h i l d i s n o t n o r m a l , when a l l t h e y want to do i s c o n c e n t r a t e on h i s / h e r n o r m a l f e a t u r e s . A l s o , a f t e r an e x p l a n a t i o n i s g i v e n t h e r e c e i v e r o f t h i s i n f o r m a t i o n o f t e n e x p e c t s r e a s s u r a n c e f r o m p a r e n t s who may be f e e l i n g v e r y u n c e r t a i n t h e m s e l v e s a b o u t t h e i r c h i l d ' s f u t u r e . The d i f f i c u l t i e s a r e compounded when r e l a t i v e s l i v e a t a d i s t a n c e o r s i b l i n g s c o n s t a n t l y demand e x p l a n a t i o n s . N u r s e s c a n h e l p p a r e n t s d e a l w i t h t h i s demand f o r e x p l a n a t i o n s i n s e v e r a l ways. F i r s t o f a l l , a t t h e t i m e o f d i a g n o s i s , o f f e r i n g t o a s s i s t p a r e n t s i n e x p l a i n i n g t h e p r o b l e m t o r e l a t i v e s and f r i e n d s who v i s i t t h e h o s p i t a l w o u l d be h e l p f u l t o them and a l s o a good way o f e v a l u a t i n g t h e p a r e n t s ' own u n d e r s t a n d i n g . N u r s e s a l s o have a p o t e n t i a l r o l e w i t h any s i b l i n g s . P a r e n t s i d e n t i f y e x p l a i n i n g a t an a p p r o p r i a t e d e v e l o p m e n t a l l e v e l as a c o n c e r n . T h e r e f o r e , t h e n u r s e c a n e i t h e r r o l e m o d e l an e x p l a n a t i o n g e t t i n g t h e p a r e n t t o p l a y t h e c h i l d , o r a c t u a l l y h e l p t h e p a r e n t s e x p l a i n d i r e c t l y t o t h e c h i l d . A f o u r t h c o n c l u s i o n i s t h a t p a r e n t s ' o v e r a l l i m p r e s s i o n s o f t h e e x p e r i e n c e do n o t r e f l e c t t h e i r f e e l i n g s a b o u t e v e r y s p e c i f i c f a c e t o f t h a t e x p e r i e n c e . I n s t e a d , t h e s e i m p r e s s i o n s a r e b a s e d i n a number o f s i t u a t i o n a l 189 f a c t o r s . The b a s i c n u r s i n g i m p l i c a t i o n f r o m t h i s i s t h a t s t a t e m e n t s o f o v e r a l l i m p r e s s i o n s h o u l d n o t be t a k e n a t f a c e v a l u e , n e i t h e r s h o u l d s t a t e m e n t s a b o u t s p e c i f i c f a c e t s be assumed t o r e f l e c t t h e o v e r a l l i m p r e s s i o n . N u r s e s who have t h e s e f a m i l i e s as c l i e n t s need t o e x p l o r e s u c h s t a t e m e n t s f u r t h e r t o g a i n a b e t t e r u n d e r s t a n d i n g o f t h e p a r e n t s ' p e r s p e c t i v e and t h e n c a r e p l a n n i n g w i l l n o t be b a s e d on f a l s e a s s u m p t i o n s . The f i f t h c o n c l u s i o n i s t h a t f a m i l i e s who have c h i l d r e n w i t h o b v i o u s symptoms o f CHD, r e q u i r i n g m a j o r a l t e r a t i o n s i n l i f e s t y l e , a r e most i n need o f l o n g - t e r m a l l i a n c e s w i t h one h e a l t h c a r e p r o f e s s i o n a l . I m p l i c a t i o n s f o r n u r s i n g t h e r e f o r e , a r e t o a s s e s s t h e i m p a c t o f t h e c h i l d ' s i l l n e s s on t h e f a m i l y and d e t e r m i n e i f a need f o r s u c h an a l l i a n c e i s b e i n g met. I f n o t , t h e p a r e n t s s h o u l d be a s s i s t e d t o f i n d a p e r s o n who c a n meet t h e i r n e e d s . T h i s m i g h t j u s t mean an o c c a s i o n a l phone c a l l f r o m someone s u c h as a c l i n i c a l n u r s e s p e c i a l i s t , t o i n d i c a t e t o t h e p a r e n t s t h a t t h e i r o n g o i n g needs a r e r e c o g n i z e d . A n o t h e r c o n c l u s i o n i s t h a t p a r e n t s go t h r o u g h a p e r i o d o f i n i t i a l a d j u s t m e n t when t h e c h i l d f i r s t comes home f r o m t h e h o s p i t a l . At t h i s t i m e t h e y have t o r e s o l v e how t o h a n d l e t h e d o u b l e - m e s s a g e g i v e n t o them by h e a l t h c a r e p r o f e s s i o n a l s — t r e a t y o u r c h i l d "as n o r m a l " but w a t c h f o r symptoms o f d e t e r i o r a t i o n . They g e n e r a l l y d e a l w i t h t h i s i s s u e by f i r s t b e i n g v i g i l a n t and t h e n g r a d u a l l y a t t e m p t i n g 190 t o n o r m a l i z e t h e s i t u a t i o n t o w h a t e v e r d e g r e e i s most c o m f o r t a b l e f o r them. A number o f 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 i s c o n c l u s i o n . P a r e n t s s h o u l d be t o l d by h e a l t h c a r e p r o f e s s i o n a l s a t t h e h o s p i t a l t h a t i t w i l l t a k e a l i t t l e w h i l e f o r them t o g e t u s e d t o t h e i r baby and what i s and i s n o t n o r m a l b e h a v i o u r f o r h i m / h e r . Once t h e y f e e l more c o m f o r t a b l e w i t h t h e i n f a n t , t h e n t h e y s h o u l d a t t e m p t t o n o r m a l i z e . N u r s e s s h o u l d g i v e c l e a r g u i d e l i n e s a b o u t what t h e y mean when t h e y s a y t o t r e a t t h e baby "as n o r m a l as p o s s i b l e . " D u r i n g t h e p e r i o d o f i n i t i a l a d j u s t m e n t p a r e n t s w i l l o f t e n have q u e s t i o n s a b o u t s y m p t o m s — w h e n t o g e t w o r r i e d and what t o do a b o u t them. P a r e n t s need t o be a b l e t o t u r n t o a k n o w l e d g e a b l e h e a l t h c a r e p r o f e s s i o n a l w i t h t h e i r q u e s t i o n s . A l t h o u g h a f a m i l y p h y s i c i a n o r p e d i a t r i c i a n may s u p p l y some o f t h e a n s w e r s , t h e p a r e n t s may need someone e l s e t o r e l y on when t h e p h y s i c i a n s a r e n o t a v a i l a b l e . The c o m m u n i t y h e a l t h n u r s e o f t e n does n o t have enough e x p e r i e n c e w i t h t h e s e i n f a n t s t o f e e l c o m f o r t a b l e i n t h a t r o l e . I n t h a t c a s e , p e r h a p s a c l i n i c a l n u r s e s p e c i a l i s t c o u l d e i t h e r s u p p o r t t h e c o m m u n i t y h e a l t h n u r s e o r g i v e d i r e c t t e l e p h o n e s u p p o r t t o t h e p a r e n t s t h e m s e l v e s . A f i n a l c o n c l u s i o n i s t h a t " t r u s t i n g h e a l t h c a r e p r o f e s s i o n a l s " i s an i m p o r t a n t c o p i n g s t r a t e g y f o r p a r e n t s , and i t t a k e s a l o t o f unmet e x p e c t a t i o n s b e f o r e t h e i r t r u s t i s s h a t t e r e d . T h i s i s p a r t i c u l a r l y t r u e when a c h i l d w i t h 191 CHD i s a w a i t i n g c o r r e c t i v e h e a r t s u r g e r y and t h e p a r e n t s know t h a t t h e y must r e l y on t h e h e a l t h c a r e p r o f e s s i o n a l s t o g e t t h e i r c h i l d t h r o u g h t h a t e v e n t . The m a j o r i m p l i c a t i o n i s f o r n u r s e s t o be aware o f t h e e x p e c t a t i o n s p a r e n t s have o f h e a l t h c a r e p r o f e s s i o n a l s and to work t o g e t h e r w i t h o t h e r s t o meet t h e p a r e n t s ' e x p e c t a t i o n s . P a r e n t s l o o k f o r c o n f i d e n c e as a m e a s u r e o f c o m p e t e n c e , g e n u i n e i n t e r e s t i n t h e i r c h i l d and f a m i l y , and h o n e s t , i n f o r m a t i v e c o m m u n i c a t i o n . A team a p p r o a c h w i t h c l e a r c o m m u n i c a t i o n b e t w e e n h e a l t h c a r e p r o f e s s i o n a l s w i l l go a l o n g way i n m e e t i n g t h e p a r e n t s ' e x p e c t a t i o n s and n u r s e s s h o u l d be m a j o r p l a y e r s on t h i s team. S o c i a l i z a t i o n o f n u r s e s a b o u t t h e i m p o r t a n c e o f t h e i r r o l e on t h e h e a l t h c a r e team must s t a r t a t t h e s t u d e n t n u r s e l e v e l i n o r d e r f o r t h i s a t t i t u d e t o become p e r v a s i v e . S t u d e n t n u r s e s a l s o must be t a u g h t t h e c o m m u n i c a t i o n s k i l l s w h i c h w i l l e n a b l e them t o be a c t i v e p a r t i c i p a n t s on t h i s team. From t h e above l i s t e d c o n c l u s i o n s comes one m a j o r g e n e r a l i m p l i c a t i o n f o r n u r s i n g p r a c t i c e . T h e r e i s p o t e n t i a l l y a l a r g e r o l e f o r n u r s e s t o p l a y w i t h t h e s e f a m i l i e s i n n u r t u r i n g them d u r i n g t h e i d e n t i f i e d t r a n s i t i o n p e r i o d . N u r s e s need t o work t o g e t h e r t o a s s i s t f a m i l i e s t o use s u i t a b l e c o p i n g s t r a t e g i e s t o a t t a i n t h e i r g o a l s when t h e y h a v e a c h i l d a w a i t i n g c o r r e c t i v e h e a r t s u r g e r y . B e c a u s e o f t h e v a r y i n g l e v e l s o f k n o w l e d g e and s k i l l o f n u r s e s w o r k i n g w i t h t h e s e f a m i l i e s i t i s i m p e r a t i v e t h a t n u r s e s c o n s u l t t h e a p p r o p r i a t e r e s o u r c e s i f t h e y do n o t 192 f e e l e q u i p p e d t o h e l p . I t i s a l s o i m p o r t a n t f o r t h o s e w i t h t h e e x p e r t i s e t o make t h e m s e l v e s a v a i l a b l e t o o t h e r s ; f o r e x a m p l e , a c l i n i c a l n u r s e s p e c i a l i s t c o u l d a c t as a c o n s u l t a n t t o n u r s e s i n co m m u n i t y h o s p i t a l s and community h e a l t h u n i t s . I m p l i c a t i o n s f o r N u r s i n g E d u c a t i o n Some v e r y g e n e r a l i m p l i c a t i o n s f o r n u r s i n g e d u c a t i o n w h i c h a r i s e f r o m t h e f i n d i n g s o f t h i s s t u d y w i l l be m e n t i o n e d h e r e . I t was v e r y c l e a r t h a t when a c h i l d w i t h CHD was a w a i t i n g c o r r e c t i v e h e a r t s u r g e r y t h e w h o l e f a m i l y u n i t was a f f e c t e d and t h e i n d i v i d u a l members had t o work t o g e t h e r t o use s u i t a b l e c o p i n g s t r a t e g i e s t o a t t a i n t h e g o a l s o f t h a t f a m i l y . One m a j o r i m p l i c a t i o n i s t o i n c o r p o r a t e a f a m i l y f o c u s as w e l l as an i n d i v i d u a l c l i e n t f o c u s i n t o n u r s i n g c u r r i c u l u m s . I n d i s c u s s i n g t h e f i n d i n g s o f t h i s s t u d y i n r e l a t i o n t o o t h e r c h r o n i c i l l n e s s e x p e r i e n c e s c i t e d i n t h e r e s e a r c h l i t e r a t u r e , i t became a p p a r e n t t h a t p a r e n t s o f t e n draw f r o m a common p o o l o f c o p i n g s t r a t e g i e s no m a t t e r what t h e c h i l d ' s c h r o n i c i l l n e s s i s . O f f e r i n g g e n e r a l t h e o r y a b o u t f a m i l y c o p i n g w i t h c h r o n i c i l l n e s s and t h e n g i v i n g s t u d e n t s t h e o p p o r t u n i t y t o a p p l y t h i s t h e o r y i n t h e c l i n i c a l s e t t i n g w i l l h e l p them t o see what t h e common c o n c e r n s and c o p i n g s t r a t e g i e s a r e . At t h e same t i m e i t i s i m p e r a t i v e t o a l w a y s e m p h a s i z e t h e i m p o r t a n c e o f e l i c i t i n g t h e i n d i v i d u a l f a m i l y ' s p e r s p e c t i v e b e f o r e p l a n n i n g c a r e . A l t h o u g h c e r t a i n c o n c e r n s and c o p i n g s t r a t e g i e s were common t o a l l 193 t h e f a m i l i e s i n t h i s s t u d y , t h e way i n w h i c h t h e c o n c e r n s were m a n i f e s t and when and how t h e c o p i n g s t r a t e g i e s were u s e d v a r i e d . T h e r e was a l s o some d e g r e e o f v a r i a n c e b e t w e e n s p o u s e s so i t i s e q u a l l y i m p o r t a n t f o r s t u d e n t s t o be t a u g h t t o e l i c i t t h e p e r s p e c t i v e o f e a c h i n d i v i d u a l f a m i l y member. I m p l i c a t i o n s f o r N u r s i n g R e s e a r c h D u r i n g t h e r e s e a r c h p r o c e s s , t h e i n v e s t i g a t o r became aware o f a number o f q u e s t i o n s w h i c h e v o l v e d f r o m h e r s t u d y t h a t had n o t been w e l l a d d r e s s e d i n t h e c u r r e n t l y r e p o r t e d e m p i r i c a l d a t a . These q u e s t i o n s w i l l now be a d d r e s s e d . I n t h e c u r r e n t s t u d y t h e i n v e s t i g a t o r g o t a t t h e m e a n i n g o f w a i t i n g f o r s u r g e r y f o r t h e s e p a r t i c u l a r p a r e n t s . T h i s i s o n l y t h e " t i p o f t h e i c e b e r g , " t h o u g h , c o n s i d e r i n g t h e d e a r t h o f r e s e a r c h i n t h i s a r e a -T h e r e f o r e , s u g g e s t i o n s f o r f u r t h e r r e s e a r c h i n t h i s a r e a a r e a p p r o p r i a t e . One q u e s t i o n w o u l d be, what a r e p a r e n t s ' p e r c e p t i o n s o f t h e i r n e eds d u r i n g t h e w a i t i n g p e r i o d f o r c o r r e c t i v e h e a r t s u r g e r y ? D a t a c o l l e c t i o n a t t h r e e p o i n t s i n t i m e , f o r e x a m p l e , s i x weeks a f t e r d i a g n o s i s , r i g h t a f t e r t h e d a t e f o r s u r g e r y i s a n n o u n c e d , and a few d a y s b e f o r e a d m i s s i o n t o t h e h o s p i t a l , w o u l d h e l p t o c l a r i f y t h e c h a n g i n g n e e d s . A n o t h e r q u e s t i o n a r i s e s f r o m t h e d i f f e r e n t d e g r e e s o f c o n c e r n e x p r e s s e d by p a r e n t s whose c h i l d r e n had p a l l i a t i v e s u r g e r y v e r s u s t h o s e whose c h i l d r e n had n o t . Do t h e c o n c e r n s o f p a r e n t s a b o u t c o r r e c t i v e h e a r t s u r g e r y c h a n g e 194 when a p a l l i a t i v e p r o c e d u r e has been done? T h i s c o u l d be a d d r e s s e d i n one o f two ways; e i t h e r by c o m p a r i n g t h e c o n c e r n s o f two g r o u p s o f p a r e n t s , o r by c o m p a r i n g t h e c o n c e r n s o f one g r o u p o f p a r e n t s , b e f o r e and a f t e r a p a l l i a t i v e p r o c e d u r e . The r e s u l t s o f s u c h r e s e a r c h c o u l d p o t e n t i a l l y g u i d e n u r s e s i n e f f e c t i v e l y a d d r e s s i n g t h e e m o t i o n a l and l e a r n i n g n eeds o f t h e s e two g r o u p s o f p a r e n t s . The s a m p l e f o r t h i s s t u d y was t o t a l l y c o m p r i s e d o f p a r e n t s h a v i n g c h i l d r e n d i a g n o s e d w i t h CHD w i t h i n t h e f i r s t few d a y s o f l i f e . I t w o u l d be i n t e r e s t i n g t o f i n d o u t a b o u t t h e e x p e r i e n c e o f f a m i l i e s whose c h i l d ' s i l l n e s s was n o t d i a g n o s e d i m m e d i a t e l y b u t i n s t e a d one t o two months a f t e r b i r t h , as i s common w i t h c e r t a i n t y p e s o f c a r d i a c d e f e c t s . One c o u l d h y p o t h e s i z e t h a t t h e i r r e a c t i o n s t o t h e d i a g n o s i s m i g h t d i f f e r and a l s o t h e i r use o f c e r t a i n c o p i n g s t r a t e g i e s , v i g i l a n c e f o r e x a m p l e . Two o f t h e c h i l d r e n w i t h CHD were f i r s t - b o r n s and f o u r were s e c o n d - b o r n s i n t h i s s t u d y . A l t h o u g h t h e f i r s t - t i m e p a r e n t s seemed a l i t t l e more a n x i o u s when f i r s t a d j u s t i n g to c a r i n g f o r t h e c h i l d o nce home, i t was d i f f i c u l t t o r e t r o s p e c t i v e l y compare d e g r e e s o f a n x i e t y and c o p i n g s t r a t e g i e s . I t m i g h t be u s e f u l t h e r e f o r e , t o compare d e g r e e s o f a n x i e t y and use o f t h e c o p i n g s t r a t e g y o f " b e i n g v i g i l a n t " amongst t h r e e g r o u p s o f p a r e n t s ; f i r s t - t i m e p a r e n t s o f h e a l t h y i n f a n t s , f i r s t - t i m e p a r e n t s o f c h i l d r e n 195 w i t h CHD, and s e c o n d - t i m e p a r e n t s whose f i r s t c h i l d was h e a l t h y and whose s e c o n d c h i l d has CHD. P a r e n t s g ave t h e i r p e r c e p t i o n s o f t h e i m p a c t o f t h e c h i l d ' s i l l n e s s on w e l l p r e s c h o o l aged s i b l i n g s . A few s t u d i e s w h i c h have compared p a r e n t s ' p e r c e p t i o n s t o w e l l s i b l i n g s ' p e r c e p t i o n s h a v e shown some s i g n i f i c a n t d i f f e r e n c e s . Most s t u d i e s w h i c h a s k s i b l i n g s d i r e c t l y f o r t h e i r p e r c e p t i o n s use a s a m p l e o f s c h o o l - a g e s i b l i n g s . T h e r e f o r e , i t m i g h t be h e l p f u l t o f i n d o u t a b o u t t h e p e r c e p t i o n s o f p r e s c h o o l e r s who have a s i b l i n g w i t h a c h r o n i c i l l n e s s t o e n h a n c e o u r a b i l i t y t o h e l p p a r e n t s meet t h e i r n e e d s . To c o n c l u d e , t h e e x p e r i e n c e o f f a m i l i e s when t h e y have a c h i l d a w a i t i n g c o r r e c t i v e h e a r t s u r g e r y i s m u l t i - f a c e t e d , t h e " w a i t i n g f o r s u r g e r y " f a c e t b e i n g o n l y one a s p e c t o f t h e t o t a l e x p e r i e n c e . O n l y by a s k i n g p a r e n t s d i r e c t l y c a n we l e a r n a b o u t t h e m e a n i n g t h e y g i v e t o t h e i r f a m i l y ' s e x p e r i e n c e . By l i s t e n i n g t o t h e i r a c c o u n t s n u r s e s c a n s t a r t t o u n d e r s t a n d how t o " n u r t u r e " f a m i l i e s d u r i n g t h e t r a n s i t i o n p e r i o d w h i c h was s t u d i e d h e r e . 196 R e f e r e n c e s A n d e r s o n , J.M. ( 1 9 8 1 ) . The s o c i a l c o n s t r u c t i o n o f i l l n e s s e x p e r i e n c e : F a m i l i e s w i t h a c h r o n i c a l l y - i l l c h i l d . J o u r n a l o f A d v a n c e d N u r s i n g , 6^ , 427-434. A p l e y , J . , B a r b o u r , R.F., & W e s t m a c o t t , I . ( 1 9 6 7 ) . I m p a c t o f c o n g e n i t a l h e a r t d i s e a s e on t h e f a m i l y : P r e l i m i n a r y r e p o r t . B r i t i s h M e d i c a l J o u r n a l , JL_, 103-105. B a r n e s , C M . ( 1 9 6 9 ) . W o r k i n g w i t h p a r e n t s o f c h i l d r e n u n d e r g o i n g h e a r t s u r g e r y . N u r s i n g C l i n i c s o f N o r t h  A m e r i c a , 4 ( 1 ) , 11-18. B i n d l e r , R.M. ( 1 9 7 9 ) . Home c a r e f o r a c h i l d w i t h a c a r d i a c d e f e c t . I s s u e s i n C o m p r e h e n s i v e P e d i a t r i c  N u r s i n g , 3(7 ), 49-59. B o g d a n , R. & T a y l o r , S.T. ( 1 9 7 5 ) . I n t r o d u c t i o n t o q u a l i t a t i v e r e s e a r c h m e t h o d s : A p h e n o m e n o l o g i c a l  a p p r o a c h t o t h e s o c i a l s c i e n c e s . New Y o r k : J o h n W i l e y & Sons . Bowen, J . ( 1 9 8 5 ) . H e l p i n g c h i l d r e n and t h e i r f a m i l i e s cope w i t h c o n g e n i t a l h e a r t d i s e a s e . C r i t i c a l C a r e Q u a r t e r l y , 8(3), 65-74. B u r t o n , L. ( 1 9 7 5 ) . The f a m i l y l i f e o f s i c k c h i l d r e n . B o s t o n , MA: R o u t l e d g e & Kegan P a u l L t d . C l a r e , M.D. ( 1 9 8 5 ) . Home c a r e o f i n f a n t s and c h i l d r e n w i t h c a r d i a c d i s e a s e . H e a r t and L u n g , 1 4 ( 3 ) , 218-222. C l o u t i e r , J . & M e a s e l , C P . ( 1 9 8 2 ) . Home c a r e f o r t h e i n f a n t w i t h c o n g e n i t a l h e a r t d i s e a s e . A m e r i c a n  J o u r n a l o f N u r s i n g , 82^(1), 100-103. C o m a r o f f , J . & M a g u i r e , P. ( 1 9 8 1 ) . A m b i g u i t y and t h e s e a r c h f o r m e a n i n g : C h i l d h o o d l e u k e m i a i n t h e modern c l i n i c a l c o n t e x t . S o c i a l S c i e n c e & M e d i c i n e , 15B, 115-123. Condon, M.R. ( 1 9 7 3 ) . The c a r d i a c c h i l d — W h a t h i s p a r e n t s need t o know. N u r s i n g ' 7 3 , 3 ( 1 0 ) , 60-61. D ' A n t o n i o , I . J . ( 1 9 7 6 ) . M o t h e r s r e s p o n s e s t o t h e f u n c t i o n i n g and b e h a v i o r o f c a r d i a c c h i l d r e n i n c h i l d - r e a r i n g s i t u a t i o n s . M a t e r n a l C h i l d N u r s i n g  J o u r n a l , H<*) , 207-264. D i e r s , D. ( 1 9 7 9 ) . R e s e a r c h i n n u r s i n g p r a c t i c e . 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. 197 D r o t a r , D., B a s k i e w i c z , B.A., I r v i n , N., K e n n e l l , J . , & K l a u s , M. ( 1 9 7 5 ) . The a d a p t a t i o n o f p a r e n t s t o t h e b i r t h o f an i n f a n t w i t h a c o n g e n i t a l m a l f o r m a t i o n : A h y p o t h e t i c a l m o d e l . P e d i a t r i c s , j>6_(5), 710-717. D u n n i n g , J . ( 1 9 8 4 ) . E f f e c t s o f an i n d i v i d u a l i z e d t e a c h i n g  and s u p p o r t p r o g r a m on a n x i e t y o f p a r e n t s o f c h i l d r e n  w i t h c o n g e n i t a l h e a r t d i s e a s e . U n p u b l i s h e d M a s t e r s T h e s i s , U n i v e r s i t y o f T o r o n t o . D u v a l l , E.M. ( 1 9 7 1 ) . F a m i l y d e v e l o p m e n t ( 4 t h e d . ) . P h i l a d e l p h i a : J.B. L i p p i n c o t t Co. D y e r , E.D. ( 1 9 6 3 ) . P a r e n t h o o d as c r i s i s . M a r r i a g e and  F a m i l y L i v i n g , 19, 352-355. E b e r l y , T.W., M i l e s , M.S., C a r t e r , M.C., H e n n e s s e y , J . , & R i d d l e , I . ( 1 9 8 5 ) . P a r e n t a l s t r e s s a f t e r t h e u n e x p e c t e d a d m i s s i o n o f a c h i l d t o t h e i n t e n s i v e c a r e u n i t . C r i t i c a l C a r e Q u a r t e r l y , £ ( 1 ) , 57-65. F e l d t , R.H., A v a s t h e y , P., Y o s h i m a s u , F., K u r k l a n d , K.T., & T i t u s , J . L . ( 1 9 7 1 ) . I n c i d e n c e o f c o n g e n i t a l h e a r t d i s e a s e i n c h i l d r e n b o r n t o r e s i d e n t s o f O l m s t e d C o u n t y , M i n n e s o t a , 1950-1969. Mayo C l i n i c a l P r o c e e d i n g s , 46, 794. F i e l d , P.A. & M o r s e , J.M. ( 1 9 8 5 ) . N u r s i n g r e s e a r c h : The  a p p l i c a t i o n o f q u a l i t a t i v e a p p r o a c h e s . R o c k v i l l e , MD: A s p e n S y s t e m s Co. F i n l e y , J . P . , P u t h e r b o u g h , C , Cook, D., N e t l e y , C , & Rowe, R.D. ( 1 9 7 9 ) . E f f e c t s o f c o n g e n i t a l h e a r t d i s e a s e on t h e f a m i l y : D i v o r c e , s e p a r a t i o n and s t a b i l i t y i n f a m i l i e s o f c h i l d r en w i t h t e t r a l o g y o f F a l l o t . P e d i a t r i c C a r d i o l o g y , 1_( 1) , 9-13. F r i e d m a n , M.M. ( 1 9 8 1 ) . F a m i l y n u r s i n g : T h e o r y and  a s s e s s m e n t . New Y o r k : A p p l e t o n - C e n t u r y C r o f t s . G a r s o n , A., B e n s o n , R.S., I v l e r , L., & P a t t o n , C. ( 1 9 7 8 ) . P a r e n t a l r e a c t i o n s t o c h i l d r e n w i t h c o n g e n i t a l h e a r t d i s e a s e . C h i l d P s y c h i a t r y and Human D e v e l o p m e n t , 9(2), 86-94. G i d d i n g , S.S. & R o s e n t h a l , A. ( 1 9 8 4 ) . The i n t e r f a c e b e t w e e n p r i m a r y c a r e and p e d i a t r i c c a r d i o l o g y . P e d i a t r i c C l i n i c s o f N o r t h A m e r i c a , 3 1 ( 6 ) , 1367-1388. G i l l o n , J . E . ( 1 9 7 3 ) . B e h a v i o r o f newborns w i t h c a r d i a c d i s t r e s s . A m e r i c a n J o u r n a l o f N u r