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A phenomenological study of parents’ experience following stillbirth or early infant death Thiessen, Janice G. 1985

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A PHENOMENOLOGICAL STUDY OF PARENTS' EXPERIENCE FOLLOWING STILLBIRTH OR EARLY INFANT DEATH By JANICE G. THIESSEN B . N . , The U n i v e r s i t y of C a l g a r y , 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 (School of Nurs ing) We accept t h i s t h e s i s as conforming to the r e q u i r e d s tandard THE UNIVERSITY OF BRITISH COLUMBIA August 1985 (c) J a n i c e G. T h i e s s e n , 1985 In presenting t h i s thesis i n p a r t i a l f u l f i l m e n t of the requirements for an advanced degree at the University of B r i t i s h Columbia, I agree that the Library s h a l l make i t f r e e l y available for reference and study. I further agree that permission for extensive copying of t h i s thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. I t i s understood that copying or publication of t h i s thesis for f i n a n c i a l gain s h a l l not be allowed without my written permission. Department of Nursing  The University of B r i t i s h Columbia 1956 Main Mall Vancouver, Canada V6T 1Y3 August ??, 1985 i i ABSTRACT A PHENOMENOLOGICAL STUDY OF PARENTS' EXPERIENCE FOLLOWING STILLBIRTH OR EARLY INFANT DEATH T h i s study was des igned to d i s c o v e r p a r e n t s ' exper ience f o l l o w i n g a s t i l l b i r t h or e a r l y i n f a n t d e a t h . The c o n c e p t u a l i z a t i o n of the r e sea rch problem was based on K l e i n m a n ' s (1978) c u l t u r a l system model which d i r e c t e d the r e s e a r c h e r to e l i c i t d i r e c t l y from c l i e n t s t h e i r exp l ana tory models , or t h e i r way of v iewing the e x p e r i e n c e . The s p e c i f i c r e sea rch ques t ions were (1) How do couple s p e r c e i v e and i n t e r p r e t t h e i r exper i ence f o l l o w i n g s t i l l b i r t h or e a r l y i n f a n t death? and (2) How do couple s view the s o c i a l support they have r e c e i v e d at the time of t h e i r i n f a n t ' s death? S ix c o u p l e s , who were r e c r u i t e d p r i m a r i l y from bereavement support g roups , p a r t i c i p a t e d i n the s t u d y . Each couple had e x p e r i e n c e d a s t i l l b i r t h or e a r l y i n f a n t death between four months and four year s p r i o r to the s tudy . Data were c o l l e c t e d from the s u b j e c t s with the use of u n s t r u c t u r e d i n t e r v i e w s , a l l o w i n g the exper i ence s to u n f o l d as they were p e r c e i v e d by the p a r t i c i p a n t s . Four main themes t h a t evo lved from the data were (1) a n t i c i p a t i o n of parenthood and the s h a t t e r i n g of hopes with the death or knowledge of impending death of the i n f a n t ; (2) a m u l t i d i m e n s i o n a l persona l g r i e f e x p e r i e n c e ; (3) an i i i i n t e r p e r s o n a l g r i e f e x e r i e n c e i n f l u e n c e d by the s o c i a l support of h e a l t h care p r o f e s s i o n a l s , of f r i e n d s and f a m i l y and of the spouse; and (4) r e f l e c t i o n and search f o r meaning in the e x p e r i e n c e . The d i s c o v e r y of c o u p l e s ' p e r c e p t i o n s of t h e i r bereavement exper ience and t h e i r view of the support r e c e i v e d w i l l a s s i s t i n enhancing the a b i l i t y to p rov ide more e f f e c t i v e n u r s i n g care to bereaved f a m i l i e s . I m p l i c a t i o n s for n u r s i n g p r a c t i c e , r e sea rch and educa t ion are d e l i n e a t e d . i v Table of Contents A b s t r a c t 1 Table of Contents i v Acknowl edgements v i CHAPTER ONE I n t r o d u c t i on 1 Background and C o n c e p t u a l i z a t i o n of the Problem 1 Problem Statement 5 Purpose of the Study 5 Assumpti ons 6 L i mi t a t i ons 6 D e f i n i t i o n of Terms 7 O r g a n i z a t i o n of the T h e s i s 7 CHAPTER TWO Methodol ogy 9 T h e o r e t i c a l and M e t h o d o l o g i c a l P e r s p e c t i v e s 9 Research Design 10 Data C o l l e c t i o n 12 D e s c r i p t i o n of Sub jec t s 13 Data A n a l y s i s 15 E t h i c a l C o n s i d e r a t i o n s 15 Summary 16 CHAPTER THREE A p p l i c a t i o n of Phenomenological A n a l y s i s 17 Viewing the Whole 18 I d e n t i f y i n g U n i t s of Meaning 18 C r e a t i n g C a t e g o r i e s 18 Deve lop ing Themes 19 S y n t h e s i z i n g a D e s c r i p t i o n 20 CHAPTER FOUR A D e s c r i p t i v e A n a l y s i s of the Data 21 Parenthood A n t i c i p a t e d and Hopes S h a t t e r e d 22 The Personal Exper i ence of G r i e f 27 Dimensions of G r i e f 30 Shock, numbness and d i s b e l i e f 30 G u i l t 33 Anger 35 Sadness and pa in 37 V The I n t e r p e r s o n a l Exper i ence of G r i e f 39 I n t e r a c t i o n s wi th Hea l th Care P r o f e s s i o n a l s . . . . 4 0 Informat ion s h a r i n g 41 D e c i s i o n making 46 S e n s i t i v i t y to p a r e n t s ' needs, f e e l i n g s and exper ience 50 I n t e r a c t i o n s wi th F r i e n d s and Fami ly 57 Response of f r i e n d s and f a m i l y to p a r e n t s . . 5 8 Acknowledgement of the c h i l d 65 I n t e r a c t i o n s w i t h i n the Couple 67 Shared and i n d i v i d u a l g r i e v i n g 68 Problems encountered 69 Coping with problems 71 R e f l e c t i o n s on the E x p e r i e n c e : Search f o r Meaning 74 CHAPTER FIVE 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 fo r Nurs ing 80 Summary 80 Concl us ions 85 I m p l i c a t i o n s f o r Nurs ing . . 86 I m p l i c a t i o n s fo r Nurs ing P r a c t i c e 86 I m p l i c a t i o n s fo r Nurs ing Research 89 I m p l i c a t i o n s fo r Nurs ing E d u c a t i o n 90 References 91 Appendix A P a r t i c i p a n t In format ion L e t t e r 99 Appendix B P a r t i c i p a n t Consent Form 102 v i ACKNOWLEDGEMENTS I would l i k e to express my thanks to the members of my t h e s i s committee , Joan Anderson and Donelda E l l i s , f o r t h e i r s u p p o r t , encouragement and guidance through t h i s r e search pro j e c t . I am g r a t e f u l to the s i x couples who w i l l i n g l y shared with me the sadness , p a i n , j o y , f r u s t r a t i o n and hope they exper i enced s u r r o u n d i n g t h e i r c h i l d ' s l i f e , death and memory. T h e i r openness and candidness eased the d i f f i c u l t y of s t u d y i n g t h i s t o p i c . I a l so l o v i n g l y acknowledge my f a m i l y and f r i e n d s , p a r t i c u l a r l y my mother and my f r i e n d Candace, who have g iven me t h e i r cons tant support through t h i s endeavor . 1 CHAPTER ONE I n t r o d u c t i o n Background and C o n c e p t u a l i z a t i o n of the Problem B i r t h i s u s u a l l y seen as a j o y f u l time of new l i f e and hope; however, when death occurs before or s h o r t l y a f t e r b i r t h there i s a sense of an " o v e r t u r n i n g of the n a t u r a l order of t h i n g s " (Lewis & L i s t o n , 1981, p . 147) . P e r i n a t a l death occurs approx imate ly once i n every one hundred b i r t h s with the 1983 ra te of s t i l l b i r t h s past 28 weeks g e s t a t i o n at 4.9 per 1000 l i v e b i r t h s and the r a te of neonatal deaths under 28 days of age at 5.5 per 1000 l i v e b i r t h s ( S t a t i s t i c s Canada, 1983) . P e r i n a t a l death i s thus an a t y p i c a l , o f ten unexpected event fo r p a r e n t s . Pregnancy and parenthood are major t r a n s i t i o n s i n l i f e i n v o l v i n g change and ad jus tment . Bereavement i s a l s o viewed as one of l i f e ' s major t r a n s i t i o n s (Hayes , 1976; Holmes & Raye, 1967; Moos, 1977), a change t h a t people are l e a s t prepared fo r and f i n d hardes t to accept ( M a r r i s , 1974) . P e r i n a t a l bereavement i s e s p e c i a l l y d i f f i c u l t f o r parents because i t i s a m a t u r a t i o n a l c r i s i s of f a i l u r e of parenthood as we l l as a s i t u a t i o n a l c r i s i s of death (Qui rk , 1979; Johnson , 1979) . Furman (1978) suggests t h a t death leads to a process of detachment from the l oved one as wel l as an i d e n t i f i c a t i o n process where the bereaved take i n t o 2 themselves a spects of the dead person or r e l a t i o n s h i p . In p e r i n a t a l d e a t h , the baby has o f ten not l i v e d long enough as a separate person fo r i d e n t i f i c a t i o n to o c c u r . Al though there i s a sense of l o s s , there i s l i t t l e sense of having l o s t a person with whom exper i ence s have been shared ( E . L e w i s , 1976). The l i t e r a t u r e pre sent s p e r i n a t a l l o s s as a c r i s i s f o r parents t h a t , i f not r e s o l v e d , can l e a d to problems i n the f u t u r e . Depres s ion was found by C l a r k e and W i l l i a m s (1979) , Clyman, Green , Rowe, M i k k e l s e n and A t a i d e (1980) and E . Lewis (1976) . W o l f f , N i e l s o n and S c h i l l e r (1970) however, found t h a t i t was not d e b i l i t a t i n g d e p r e s s i o n . D i s t u r b a n c e i n communicat ion , m a r i t a l and sexual problems , as wel l as d i f f i c u l t i e s wi th o ther c h i l d r e n are f a m i l y concerns or problems i n some cases (Clyman et a l . , 1980; G i l e s , 1970; Helmrath & S t e i n i t z , 1978). The s o c i a l support r e c e i v e d from o ther s i n f l u e n c e s the a b i l i t y to cope with c r i s i s and adapt to change (Cobb, 1976; S c h l o s s b e r g , 1981). The spouse, f a m i l y , f r i e n d s , and h e a l t h care p r o f e s s i o n a l s are p o t e n t i a l sources of support f o r people e x p e r i e n c i n g p e r i n a t a l dea th . S t r ingham, R i l e y and Ross (1982) and E . Lewis (1976) s t a t e t h a t few h e a l t h care p r o f e s s i o n a l s are ab le to t a l k d i r e c t l y to g r i e v i n g parents about t h e i r s t i l l b o r n b a b i e s . T h i s r e t i c e n c e may be due to a l a ck of under s t and ing of the exper ience and needs of bereaved p a r e n t s . The r e s e a r c h e r ' s persona l exper ience as a 3 community h e a l t h nurse i n v o l v e d f e e l i n g s of inadequacy and l i m i t e d under s t and ing of the exper ience of p e r i n a t a l l y bereaved f a m i l i e s . Community h e a l t h nurses are i n a p o s i t i o n to p rov ide support to bereaved parents thus a s s i s t i n g them i n cop ing wi th the death of t h e i r c h i l d . Such i n t e r v e n t i o n may prevent l ong- te rm p s y c h o s o c i a l problems a r i s i n g from u n r e s o l v e d g r i e f . Support can take the form of m a i n t a i n i n g and s t r e n g t h e n i n g the support system of the f a m i l y , and p a r t i c u l a r l y of the couple (Norbeck, 1981; Wright & B e l l , 1981). In s p i t e of r a p i d l y expanding knowledge and technology in h e a l t h c a r e , there i s ev idence of d i s s a t i s f a c t i o n wi th the q u a l i t y of care r e c e i v e d from h e a l t h care p r o f e s s i o n a l s (K le inman , E i s e n b e r g & Good, 1978). T h i s d i s s a t i s f a c t i o n has been expressed by parents f o l l o w i n g p e r i n a t a l death ( W o l f f , e t a l . 1970) . E . Lewis (1976) , Davidson (1977) , and Helmrath and S t e i n i t z (1978) have i d e n t i f i e d a " c o n s p i r a c y of s i l e n c e " from h e a l t h care p r o f e s s i o n a l s when parents i n d i c a t e d the need to t a l k about t h e i r e x p e r i e n c e s . D i s c r e p a n c i e s between p a r e n t s ' needs and h e a l t h care p r o f e s s i o n a l s ' behav ior are apparent i n the d i f f e r e n t ways p r o f e s s i o n a l s and c l i e n t s view t h e i r i l l n e s s e s and need fo r h e a l t h c a r e . 4 Kleinman has developed a c u l t u r a l system model to e x p l a i n the i n t e r a c t i o n s between d i f f e r e n t s e c t o r s of s o c i e t y i n r e l a t i o n to h e a l t h c a r e . S i cknes s i s e x p e r i e n c e d and responded to in three arenas (1) the popular s e c t o r , which i n c l u d e s the i n d i v i d u a l and the f a m i l y as wel l as s o c i a l network and community a c t i v i t i e s , (2) the p r o f e s s i o n a l s e c t o r , and (3) the f o l k s e c t o r , which i n c l u d e s n o n p r o f e s s i o n a l h e a l i n g s p e c i a l i s t s . Because of d i f f e r i n g r o l e s , r e l a t i o n s h i p s , b e l i e f s , and t r a n s a c t i o n s e t t i n g s , these three groups c o n s t r u c t r e a l i t y i n d i f f e r e n t ways, c a l l e d e x p l a n a t o r y models by K le inman . When exp l ana tory models c o n f l i c t , h e a l t h care may be impeded (K le inman , 1978). K l e i n m a n ' s c u l t u r a l system model g ive s d i r e c t i o n to the r e s e a r c h e r to e l i c i t the exper ience d i r e c t l y from those who have e x p e r i e n c e d i t ; i n o ther words , to f i n d out from parents how t h e i r i n f a n t ' s death a f f e c t e d them. D i s c o v e r i n g the c l i e n t s ' c o n s t r u c t i o n of r e a l i t y w i l l a s s i s t the p r o f e s s i o n a l s e c t o r , which i n c l u d e s n u r s i n g , to (1) p r o v i d e more a p p r o p r i a t e care to c l i e n t s and (2) to f o s t e r the popular s e c t o r sources of s u p p o r t , p a r t i c u l a r l y the f a m i l y , as most i l l n e s s e s and d e c i s i o n s to seek help are managed s o l e l y w i t h i n the popular s e c t o r (K le inman , 1978). The focus of t h i s study w i l l be the e x p l a n a t o r y models of the couple s e x p e r i e n c i n g the l o s s , i . e . the popular s e c t o r . The p r o f e s s i o n a l s e c t o r model as seen by the couples w i l l be 5 addre s sed . The f o l k s e c t o r w i l l not be c o n s i d e r e d i n t h i s s tudy . Problem Statement Death of an i n f a n t before or s h o r t l y a f t e r b i r t h i s , f o r p a r e n t s , a major l o s s tha t has the p o t e n t i a l to cause personal and f a m i l y problems i f the g r i e f i s not r e s o l v e d ( C l a r k & W i l l i a m s , 1979 ; Clyman et a l . , 1980; E . Lewi s , 1976). An u n d e r s t a n d i n g , t h e r e f o r e , of the g r i e v i n g exper ience of the parents w i l l help nurses p r o v i d e b e t t e r care and f o s t e r support systems fo r the f a m i l y . To promote an under s t and ing of the exper i ence of couple s f o l l o w i n g the death of t h e i r i n f a n t s , t h i s study w i l l address the f o l l o w i n g q u e s t i o n s : (1) How do couples p e r c e i v e and i n t e r p r e t t h e i r exper i ence f o l l o w i n g s t i l l b i r t h or e a r l y i n f a n t death? (2) How do couple s view the s o c i a l support they r e c e i v e d at the time of t h e i r i n f a n t s ' death? Purpose of the Study The purpose of t h i s study i s to gain an under s t and ing of the exper ience of parents f o l l o w i n g s t i l l b i r t h or e a r l y i n f a n t death i n order to p rov ide more e f f e c t i v e n u r s i n g c a r e . The study attempts to d i s c o v e r how couple s p e r c e i v e t h e i r bereavement exper i ence and how they view the s o c i a l support they r e c e i v e i n a b e l i e f tha t a b e t t e r under s t and ing of the exper ience and i d e n t i f i c a t i o n of the c h a r a c t e r i s t i c s 6 of e f f e c t i v e support w i l l enhance the a b i l i t y to g ive and f o s t e r t h i s s u p p o r t . Assumpti ons T h i s study i s based on the f o l l o w i n g a s sumpt ions : 1. S t i l l b i r t h and e a r l y i n f a n t death are meaningful exper i ence s fo r p a r e n t s . 2. Meaning can be communicated by people who have had the e x p e r i e n c e . 3. The c o n s t r u c t i o n of the exper ience i s a v a l i d r e p r e s e n t a t i o n of the exper i ence and can promote f u r t h e r under s tand ing of the t o p i c . Limi t a t i ons T h i s study i s l i m i t e d by the s u b j e c t s ' w i l l i n g n e s s and a b i l i t y to express t h e i r t rue f e e l i n g s and p e r c e p t i o n s of the e x p e r i e n c e . Schwartz and Jacobs (1979) note the p o s s i b i l i t y of "a d i s c r e p e n c y between what people say and what they mean" (p . 4 1 ) . T h i s l i m i t a t i o n was reduced through c l a r i f i c a t i o n and v a l i d a t i o n of s u b j e c t s ' accounts dur ing data c o l l e c t i o n . Because the sample was o b t a i n e d p r i m a r i l y from bereavement support groups , the f i n d i n g s may be l i m i t e d to couple s who have u t i l i z e d re sources s i m i l a r to those used by the coup le s i n the s t u d y . 7 D e f i n i t i o n of Terms P e r i n a t a l dea th : D o r l a n d ' s Medica l D i c t i o n a r y (1981) de f ine s p e r i n a t a l as " p e r t a i n i n g to or o c c u r r i n g i n the p e r i o d s h o r t l y before and a f t e r b i r t h ; v a r i o u s l y d e f i n e d as beg inn ing with comple t ion of the t w e n t i e t h to the t w e n t y - e i g h t h week of g e s t a t i o n and ending seven to t w e n t y - e i g h t days a f t e r b i r t h " (p . 990) . When used i n r e f e r e n c e to the study p o p u l a t i o n , p e r i n a t a l death w i l l i n c l u d e the e n t i r e sample of deaths which ranged from 31 weeks g e s t a t i o n to seven weeks of age. Subsumed under t h i s d e f i n i t i o n i s the phrase " s t i l l b i r t h and e a r l y i n f a n t d e a t h , " used i n t e r c h a n g e a b l y wi th p e r i n a t a l dea th . P a r e n t s : na tura l mother and f a t h e r who had in tended to r a i s e the c h i l d t o g e t h e r . Exper i ence f o l l o w i n g p e r i n a t a l dea th : e m o t i o n a l , p s y c h o l o g i c a l , p h y s i c a l and s o c i a l response to the l o s s of fe tus or i n f a n t . S o c i a l s u p p o r t : In format ion l e a d i n g one to b e l i e v e tha t he or she i s cared f o r and l o v e d , esteemed and a member of a network of mutual o b l i g a t i o n s (Cobb, 1976). O r g a n i z a t i o n of the T h e s i s T h i s chapter has presented a framework fo r c o n c e p t u a l i z i n g the problem, a statement of the problem and 8 the purpose of i n v e s t i g a t i n g the problem of p a r e n t s ' exper ience f o l l o w i n g s t i l l b i r t h or e a r l y i n f a n t dea th . Chapter two d i s c u s s e s phenomenology as the methodo log i ca l p e r s p e c t i v e used i n t h i s s tudy . The methodology used i n d e s i g n i n g the s t u d y , g a i n i n g access to s u b j e c t s , c o l l e c t i n g data and a n a l y z i n g the data i s a l so c o v e r e d . Chapter three d e s c r i b e s the a p p l i c a t i o n of the phenomenological approach i n a n a l y z i n g the data from t h i s s tudy . Chapter four i s a d e s c r i p t i v e a n a l y s i s of the data o b t a i n e d from parents who have e x p e r i e n c e d the death of an i n f a n t . Reference to the l i t e r a t u r e i s made throughout the d i s c u s s i o n i n chapter f o u r . Chapter f i v e summarizes the f i n d i n g s , draws c o n c l u s i o n s and s t a t 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 , e d u c a t i o n and r e s e a r c h . 9 Chapter Two Methodology T h e o r e t i c a l and M e t h o d o l o g i c a l P e r s p e c t i v e s The q u a l i t a t i v e r e sea rch des ign of phenomenology i s an a p p r o p r i a t e methodology fo r t h i s study i n which the r e s e a r c h e r i s seeking to unders tand the exper i ence of a p a r t i c u l a r group of p e o p l e , namely parents who have s u f f e r e d a s t i l l b i r t h or e a r l y i n f a n t dea th . "Phenomenology i s the study of human exper ience from the a c t o r ' s p a r t i c u l a r p e r s p e c t i v e . The purpose of phenomenology i s to more f u l l y understand the s t r u c t u r e and meaning of human e x p e r i e n c e " (Knaack, 1984, p . 1 0 7 ) . Two broad complementary approaches used i n n u r s i n g re search are the q u a n t i t a t i v e and the q u a l i t a t i v e approaches ( O i l e r , 1982) . The q u a n t i t a t i v e method seeks to study nature i n terms of small measurable u n i t s (Ornery, 1983) whereas the q u a l i t a t i v e approach tends toward a more h o l i s t i c approach ( O i l e r , 1982) . Q u a n t i t a t i v e r e sea rch uses e x p e r i m e n t a t i o n with the o b j e c t i v e s of causa l a n a l y s i s and c o n t r o l whereas q u a l i t a t i v e r e sea rch uses d e s c r i p t i o n with the o b j e c t i v e s of i d e n t i f i c a t i o n and under s t and ing of phenomena ( G i o r g i , 1975a; Ornery, 1983). Phenomenology i s a type of q u a l i t a t i v e r e sea rch tha t attempts to " d e s c r i b e human exper ience as i t i s l i v e d " 10 ( O i l e r , 1982, p. 178) . In phenomenology a l l phenomena, i n c l u d i n g human e x p e r i e n c e , are i n v e s t i g a t e d and d e s c r i b e d as they appear to the i n d i v i d u a l . A l l data ob ta ined from the s u b j e c t are deemed r e l e v a n t . Data i n c l u d e the i n d i v i d u a l ' s s u b j e c t i v e p e r c e p t i o n of the exper ience under study as wel l as the e f f e c t s of t h a t exper ience and p e r c e p t i o n on him or h e r s e l f (Ornery, 1983). Because the r e s e a r c h e r i s a t t empt ing to unders tand the exper ience from the p e r s p e c t i v e of the i n d i v i d u a l , the r e s e a r c h e r must r e c o g n i z e h i s or her own p r e c o n c e i v e d i d e a s , attempt to set them a s i d e , and focus on the p a r t i c i p a n t ' s p e r s p e c t i v e ( O i l e r , 1982; Ornery, 1983; Schwartz & J acobs , 1979 ) . Phenomenological r e s e a r c h i s congruent with the c o n c e p t u a l i z a t i o n of the problem t h a t i s based on K l e i n m a n ' s c u l t u r a l system model . The c u l t u r a l system model g ives d i r e c t i o n to f i n d out how p a r t i c i p a n t s i n h e a l t h care i n t e r a c t i o n s c o n s t r u c t r e a l i t y . In o b t a i n i n g p e r c e p t i o n s of parents who have e x p e r i e n c e d the l o s s of an i n f a n t and a t tempt ing to f i n d common themes in these e x p e r i e n c e s , the r e s e a r c h e r hopes to b e t t e r unders tand the r e a l i t y of the exper ience fo r o ther s going through a s i m i l a r e x p e r i e n c e . Research Design Study p a r t i c i p a n t s were r e c r u i t e d p r i m a r i l y from two bereavement support groups i n the G r e a t e r Vancouver a r e a . 11 Leaders of these groups were c o n t a c t e d fo r a s s i s t a n c e i n i n f o r m i n g p o t e n t i a l s u b j e c t s of the s tudy . I n t r o d u c t o r y l e t t e r s (see Appendix A) e x p l a i n i n g the study and i n v i t i n g p a r t i c i p a t i o n were g iven to the l e a d e r s fo r d i s t r i b u t i o n to those e l i g i b l e . I n t e r e s t e d couples c o n t a c t e d the r e s e a r c h e r or consented to have the r e s e a r c h e r c o n t a c t them to p r o v i d e more i n f o r m a t i o n about the s tudy . S ix couple s i n t o t a l p a r t i c i p a t e d in the s tudy . Four of these couples agreed to p a r t i c i p a t e f o l l o w i n g c o n t a c t through a bereavement support group; one couple heard about the study through o ther p a r t i c i p a n t s ; and another couple heard about i t through a f r i e n d of the r e s e a r c h e r . An e x p l a n a t i o n of the purpose of the study and the r o l e of the p a r t i c i p a n t s was g iven to the p r o s p e c t i v e s u b j e c t s . A consent form e x p l a i n i n g the study and the r i g h t s and p r o t e c t i o n of the s u b j e c t s was s igned p r i o r to commencement (see Appendix B ) . E l i g i b l e s u b j e c t s were those who had e x p e r i e n c e d a s t i l l b i r t h or an e a r l y i n f a n t dea th . Because the g r i e f exper ience occurs over a span of t i m e , the r e s e a r c h e r chose a minimum of s i x months a f t e r the dea th , to g ive the parents time to r e f l e c t on t h e i r exper i ence s and c o n s t r u c t them i n meaningful ways fo r themse lve s . In t h i s sample the maximum l e n g t h of time s i n c e the death was four y e a r s . Problems i n g a i n i n g access to s u b j e c t s l e d the r e s e a r c h e r to ad ju s t the minimum time span i n the case of one couple who i n d i c a t e d i n t e r e s t i n the study four months a f t e r t h e i r c h i l d ' s dea th . 12 A " t h e o r e t i c a l s ampl ing" procedure as o u t l i n e d by G l a s e r and S t raus s (1967) was u t i l i z e d . The sample c o n s i s t e d of s u b j e c t s who were competent to speak to the exper ience on the ba s i s of having l i v e d i t . With the t h e o r e t i c a l sampling method the r e s e a r c h e r c o l l e c t e d data and immediate ly began cod ing and a n a l y z i n g i t . The i n i t i a l cod ing and a n a l y s i s gave d i r e c t i o n fo r c o n t i n u e d data c o l l e c t i o n to develop the concepts t h a t were emerging . " T h e o r e t i c a l s a t u r a t i o n " ( G l a s e r & S t r a u s s , 1967) occurs when no new concepts are be ing found i n the d a t a . In t h i s s tudy , the sample s i z e was l i m i t e d to s i x couple s due to the comprehensiveness of the data o b t a i n e d . No new concepts arose from the data i n the i n t e r v i e w s wi th the s i x t h c o u p l e , i n d i c a t i n g t h e o r e t i c a l s a t u r a t i o n . Data C o l l e c t i o n Data were c o l l e c t e d from the s u b j e c t s d u r i n g u n s t r u c t u r e d aud io- t ape recorded i n t e r v i e w s . F o l l o w i n g an e x p l a n a t i o n of the s t u d y , the r e s e a r c h e r e l i c i t e d a d e s c r i p t i o n of the exper i ence a l l o w i n g i t to u n f o l d as p e r c e i v e d by the couple ( G i o r g i , 1975a ,b ) . C l a r i f i c a t i o n and e l a b o r a t i o n was o c c a s i o n a l l y sought by the r e s e a r c h e r ; f o r example, i f the f a t h e r d i d not spontaneous ly add h i s comments to those of the mother on a s p e c i f i c p o i n t , he was i n v i t e d by the r e s e a r c h e r to do so. 13 The f i r s t i n t e r v i e w covered the events l e a d i n g up to the c h i l d ' s dea th ; the r e a c t i o n of the parents to the dea th ; the r e a c t i o n s of o ther s to the death and to the parents f o l l o w i n g the dea th ; the i n t e r a c t i o n with h e a l t h care p r o f e s s i o n a l s and the e f f e c t s of the death on the c o u p l e . The aud io - t aped i n t e r v i e w s were t r a n s c r i b e d and a n a l y z e d . In the second i n t e r v i e w the r e s e a r c h e r sought to c l a r i f y a spects of the f i r s t i n t e r v i e w . The emerging conceptua l themes were v a l i d a t e d by s h a r i n g with parents the r e s e a r c h e r ' s i n t e r p r e t a t i o n of the data from the i n i t i a l i n t e r v i ews. T iming of the f i r s t i n t e r v i e w ranged from four months f o l l o w i n g the death to four y e a r s . Second i n t e r v i e w s were p lanned f o r one month a f t e r the f i r s t , but due to persona l c o n s t r a i n t s f o r the r e s e a r c h e r , were conducted about s i x months a f t e r the f i r s t . D e s c r i p t i o n of Sub jec t s The couple s p a r t i c i p a t i n g i n t h i s study had a l l s u f f e r e d the l o s s of at l e a s t one c h i l d d u r i n g pregnancy or i n e a r l y i n f a n c y . The a c t u a l exper i ence s of these couples covered a wide range i n terms of time of the dea th , e x p e c t a t i o n of the d e a t h , o ther c h i l d r e n i n the f a m i l y , time s ince the death and p r e v i o u s exper ience wi th l o s s and g r i e f . Two of the couple s had exper i enced the s t i l l b i r t h of t h e i r c h i l d between seven and e i g h t months g e s t a t i o n . In 14 both c a s e s , the mothers had become concerned due to decreased or l ack of movement, and f e t a l death was conf i rmed s h o r t l y a f t e r t h i s concern was expressed to t h e i r d o c t o r s . One woman was u n s u c c e s s f u l l y induced but s t i l l c a r r i e d the fe tus fo r two weeks p r i o r to spontaneous d e l i v e r y . The other woman was expected to abor t the f e tus spontaneous ly but c a r r i e d i t a f u r t h e r f i v e weeks. The i n f a n t s of three of the coup le s d i ed w i t h i n hours of b i r t h . One couple had known s i n c e f i v e months g e s t a t i o n tha t there were problems and t h a t the baby c o u l d d ie before b i r t h . The baby was d e l i v e r e d at term and l i v e d fo r three hour s . Another couple d e l i v e r e d twins wi th one s u r v i v i n g minutes and the o ther s u r v i v i n g fo r s evera l hour s . Al though m e d i c a l l y no problems had been a n t i c i p a t e d and the twin pregnancy had not been i d e n t i f i e d , the parents f e l t they had known s u b c o n s c i o u s l y tha t s u r v i v a l of t h e i r twins was u n l i k e l y . One c o u p l e ' s baby d ied of a g e n e t i c c o n d i t i o n one hour a f t e r b i r t h . T h i s couple was unprepared fo r the p o s s i b l e l o s s of t h e i r baby as r e s u l t s from an amniocente s i s were normal . T h e i r next c h i l d , who had the same g e n e t i c problem, s u r v i v e d f o r three weeks. Al though they d i d not know the second baby ' s s t a t e of h e a l t h u n t i l b i r t h , they were aware of the i n c r e a s e d p r o b a b i l i t y of a r e c u r r e n c e of the g e n e t i c d i s o r d e r . One of the couple s had had three f e t a l l o s s e s at the f ive-month to s ix-month p e r i o d and had r e c e n t l y exper i enced 15 the l o s s of t h e i r seven week o l d baby through sudden i n f a n t death syndrome. Three of the couple s had at l e a s t one o ther c h i l d p r i o r to the i n f a n t dea th . One couple had subsequent ly adopted a c h i l d and another couple had g iven b i r t h to a hea l thy c h i l d s i n c e the d e a t h . One couple had had an e a r l y m i s c a r r i a g e f o l l o w i n g t h e i r i n f a n t ' s d e a t h . Data A n a l y s i s Data a n a l y s i s was based on G i o r g i ' s s teps i n phenomenological methodology ( 1975a ,b ) . The s teps are o u t l i n e d here wi th a f u l l d e s c r i p t i o n of the a n a l y s i s procedure i n Chapter T h r e e . (1) The r e s e a r c h e r read through the d e s c r i p t i o n to get a sense of the whole . (2) The r e s e a r c h e r re read the d e s c r i p t i o n l o o k i n g f o r u n i t s of meaning. (3) The r e s e a r c h e r combined s i m i l a r u n i t s of meaning i n t o c a t e g o r i e s t h a t were c l a r i f i e d and e l a b o r a t e d on by r e l a t i n g them to each o ther and to the whole . (4) The r e s e a r c h e r r e f l e c t e d on the c a t e g o r i e s and t rans formed them from everyday language i n t o more a b s t r a c t c o n c e p t s . (5) The r e s e a r c h e r s y n t h e s i z e d and i n t e g r a t e d these i n s i g h t s i n t o a w r i t t e n d e s c r i p 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 r e s e a r c h e r ensured t h a t s u b j e c t s were informed about the study p r i o r to t h e i r g i v i n g c o n s e n t . She 16 e x p l a i n e d the nature of the s tudy , i t s purpose and in tended use as wel l as the expected r o l e of p a r t i c i p a n t s and c o n f i d e n t i a l i t y of the data g i v e n . P a r t i c i p a n t s were as sured tha t consent was v o l u n t a r y , t h a t they were f ree to withdraw or re fuse to answer any ques t ions at any t i m e , and t h a t r e f u s a l to p a r t i c i p a t e would not j e o p a r d i z e f u r t h e r medical and n u r s i n g c a r e . C o n f i d e n t i a l i t y was ensured by the use of cod ing to i d e n t i f y the t r a n s c r i p t s . The t r a n s c r i p t s were read by the r e s e a r c h e r and her t h e s i s committee o n l y . S u b j e c t s ' names and o ther i d e n t i f y i n g i n f o r m a t i o n were not used i n any p r e s e n t a t i o n of the d a t a . Sub jec t s were g iven access to the r e s u l t s of the s t u d y . Summary T h i s chapter has d e s c r i b e d the t h e o r e t i c a l and methodo log i ca l approach of phenomenology i n s t u d y i n g the exper ience of parents f o l l o w i n g p e r i n a t a l d e a t h . The next chapter w i l l more f u l l y d e s c r i b e the process of data a n a l y s i s w i t h i n the phenomenological paradigm. 17 CHAPTER THREE A p p l i c a t i o n of Phenomenological A n a l y s i s The purpose of phenomenology i s to d e s c r i b e phenomena as they are l i v e d ( O i l e r , 1982). The q u a l i t a t i v e study of people i n t h e i r n a t u r a l environments i s a process of d i s c o v e r y and l e a r n i n g what i s happening . L o f l a n d (1971) e l a b o r a t e s on t h i s i n the f o l l o w i n g way: S ince a major par t of what i s happening i s p r o v i d e d by people i n t h e i r own terms , one must f i n d out about those terms r a t h e r than impose upon them a p r e c o n c e i v e d or o u t s i d e r ' s scheme of what they are about . I t i s the o b s e r v e r ' s task to f i n d out what i s fundamental or c e n t r a l to the people or wor ld under o b s e r v a t i o n , (p . 4) Phenomenology, as a way of d i s c o v e r i n g what people are e x p e r i e n c i n g i n t h e i r own terms , i s c o n s i s t e n t with K l e i n m a n ' s (1978) e x p l a n a t o r y model framework fo r v iewing s e c t o r s of the h e a l t h care system. Having gathered the data through i n t e r v i e w i n g couple s f o l l o w i n g p e r i n a t a l l o s s , the r e s e a r c h e r must ana lyze and o r g a n i z e the i n t e r v i e w data i n a meaningful way. "The q u a l i t a t i v e a n a l y s t seeks to p r o v i d e an e x p l i c i t r e n d e r i n g of the s t r u c t u r e , o r d e r , and p a t t e r n s found among a set of p a r t i c i p a n t s " ( L o f l a n d , 1971, p . 7 ) . To develop such a 18 d e s c r i p t i o n of the p a r t i c i p a n t s ' e x p e r i e n c e s , the r e s e a r c h e r based her a n a l y s i s on the method G i o r g i d e s c r i b e d i n h i s work on the a p p l i c a t i o n of the phenomenological method i n psychology ( 1975a ,b ) . Viewing the Whole The f i r s t step was to read through the t r a n s c r i p t s to get a sense of the whole . In t h i s study the r e s e a r c h e r p e r s o n a l l y conducted the i n t e r v i e w s and t r a n s c r i b e d most of the t a p e s . T h i s invo lvement a long with r e a d i n g through the i n t e r v i e w s a l lowed the r e s e a r c h e r to grasp the essence of the d e s c r i p t i o n s . I d e n t i f y i n g U n i t s of Meaning The second step of the a n a l y s i s was a s low, methodica l re read to i d e n t i f y changes i n t o p i c or meaning. Each r e s u l t i n g u n i t of meaning was then summarized wi th a b r i e f s tatement us ing terms s i m i l a r to those used by the s u b j e c t s . C r e a t i n g C a t e g o r i e s In the t h i r d step s i m i l a r meaning u n i t s from a l l of the i n t e r v i e w s were c a t e g o r i z e d . The c a t e g o r i e s ranged from very c o n c r e t e , such as a d e s c r i p t i o n of the c h i l d ' s c o n d i t i o n and t i m i n g of e v e n t s , to more a b s t r a c t such as hope, i s o l a t i o n and sadness . Approx imate ly 40 c a t e g o r i e s were i d e n t i f i e d d u r i n g t h i s p r o c e s s . Some c a t e g o r i e s were 19 subsequent ly broken down f u r t h e r , w h i l e o ther s were combined. The ideas tha t e v o l v e d through t h i s c a t e g o r i z a t i o n were compared wi th each o ther and r e l a t e d back to the whole . Deve lop ing Themes The r e s e a r c h e r pondered the data and rear ranged the 40 c a t e g o r i e s to develop four main themes from the d a t a . The themes tha t evo lved were (1) a n t i c i p a t i o n of parenthood and the s h a t t e r i n g of hopes wi th the death or knowledge of impending death of the i n f a n t ; (2) a m u l t i d i m e n s i o n a l personal g r i e f e x p e r i e n c e ; (3) an i n t e r p e r s o n a l g r i e f exper ience i n f l u e n c e d by the s o c i a l support of h e a l t h care p r o f e s s i o n a l s , of f r i e n d s and f a m i l y and of the spouse; and (4) r e f l e c t i o n and search fo r meaning i n the e x p e r i e n c e . Al though the s teps i n the a n a l y s i s are o u t l i n e d i n a s e q u e n t i a l o r d e r , the r e s e a r c h e r moved back and f o r t h between the i n t a c t d e s c r i p t i o n , the meaning u n i t s , the c a t e g o r i e s and the themes to ensure t h a t the themes r e f l e c t e d the ac tua l conten t and to promote an accura te and complete d e s c r i p t i o n . S y n t h e s i z i n g a W r i t t e n D e s c r i p t i o n The themes t h a t evo lved from the d e s c r i p t i o n s d i r e c t e d the r e s e a r c h e r to search out l i t e r a t u r e beyond t h a t s p e c i f i c a l l y r e l a t e d to p e r i n a t a l d e a t h , i n areas such as 20 l o s s and g r i e f , s o c i a l s u p p o r t , developmental and s i t u a t i o n a l c r i s e s , and h e a l t h care p r o v i s i o n . T h i s l i t e r a t u r e was i n t e g r a t e d wi th the d e s c r i p t i o n of the c o u p l e s ' exper i ence w i t h i n the framework of the four themes tha t arose from the study d a t a . Chapter Four i s a d e s c r i p t i v e a n a l y s i s of the data p r o v i d e d by s i x coup le s who had s t i l l b i r t h s or e a r l y i n f a n t dea ths . 21 CHAPTER FOUR A D e s c r i p t i v e A n a l y s i s of the Data In each ca se , the p a r e n t s ' d e s c r i p t i o n of the death of t h e i r i n f a n t and t h e i r exper i ences su r round ing the death i n d i c a t e d to the r e s e a r c h e r t h a t t h i s was a s i g n i f i c a n t event i n t h e i r l i v e s , tha t the l o s s was enormous and t h a t the g r i e f was overwhelming at t i m e s . The joy they had a n t i c i p a t e d i n be ing parents and i n s h a r i n g l i f e wi th t h e i r i n f a n t had turned i n t o extreme sadness and p a i n . Two major aspects of the exper ience were e v i d e n t : tha t i t was a personal exper ience with an i n d i v i d u a l response of g r i e f and tha t i t was a shared exper ience wi th g r i e f i n f l u e n c e d by i n t e r a c t i o n with o t h e r s . T h i s chapter w i l l d e s c r i b e the f o l l o w i n g aspects of the p a r e n t s ' e x p e r i e n c e : (1) a n t i c i p a t i o n of parenthood and the s h a t t e r i n g of hopes wi th the death or knowledge of impending death of the i n f a n t ; (2) a m u l t i d i m e n s i o n a l persona l exper ience of g r i e f at the death of the i n f a n t ; (3) an i n t e r p e r s o n a l g r i e f exper i ence i n f l u e n c e d by the s o c i a l support of h e a l t h care p r o f e s s i o n a l s , of f r i e n d s and f a m i l y and of the spouse; and (4) r e f l e c t i o n and search f o r meaning in the e x p e r i e n c e . Re levant l i t e r a t u r e w i l l be used throughout the d i s c u s s i o n to compare the exper ience of the study parents with the f i n d i n g s and t h e o r i e s of o ther r e s e a r c h e r s . 22 Parenthood A n t i c i p a t e d and Hopes S h a t t e r e d Many f a c t o r s i n f l u e n c e p e o p l e s ' m o t i v a t i o n to become p a r e n t s , t h e i r e x p e c t a t i o n s of the e x p e r i e n c e and of the c h i l d , and t h e i r c o n t r i b u t i o n s to the e x p e r i e n c e . Because of the c o m p l e x i t y of the psychology of pa renthood , there i s an even g r e a t e r complex i ty i n the c u r t a i l i n g of parenthood . An i n d i v i d u a l ' s ideas of parenthood begin long before pregnancy or the b i r t h of a c h i l d . Smoyak (1982) has i d e n t i f i e d s o c i a l i z a t i o n as a f a m i l y f u n c t i o n i n which c h i l d r e n are imbued wi th the idea of c o n t i n u i t y . She b e l i e v e s t h a t " the most important work of parents as s o c i a l i z i n g agents i s to get each succeed ing g e n e r a t i o n to want to go on" (p . 25 ) . One's concept of parenthood thus begins to form i n e a r l y c h i l d h o o d . Along with the i n d i v i d u a l ' s concept of parenthood , s o c i e t y has a t t ached a v a r i e t y of symbol ic meanings to pregnancy and c h i l d b i r t h . Pregnancy may be seen as the u l t i m a t e c r e a t i v e a c t , as a r i t e of passage i n t o a d u l t h o o d , as a proof of womanhood or manhood and as a symbol of s e x u a l i t y (Colman, 1983) . M i l e s (1984) goes on to say tha t c h i l d r e n are i n some ways ex tens ions of t h e i r parents i n t o the f u t u r e , r e p r e s e n t i n g c o n t i n u i t y of l i f e and i m m o r t a l i t y . The process of becoming parents i s c o n s i d e r e d a major t r a n s i t i o n i n l i f e ( B i b r i n g , 1959; Murray , L u e t j e , & Z e n t n e r , 1985) . Pregnancy i s a developmental c r i s i s tha t 23 i n v o l v e s p h y s i c a l changes i n the woman, growth of the fe tus and emotional changes i n both parents (Klaus & K e n n e l l , 1982) . These changes normal ly produce s t r e s s and a n x i e t y . The changes and the r e s u l t i n g s t r e s s and a n x i e t y are the focus of v a r i o u s p s y c h o l o g i c a l tasks of pregnancy t h a t serve as a p r e p a r a t i o n fo r parenthood . R u b i n ' s (1975) maternal tasks of pregnancy are expressed as (1) seek ing safe passage fo r h e r s e l f and her c h i l d through pregnancy , l a b o r and d e l i v e r y ; (2) e n s u r i n g the acceptance of the c h i l d she bears by s i g n i f i c a n t persons i n her f a m i l y ; (3) b i n d i n g i n to her unknown c h i l d ; and (4) l e a r n i n g to g ive of h e r s e l f . E n s u r i n g safe passage and b i n d i n g i n to the c h i l d were p a r t i c u l a r l y r e l e v a n t to the parents i n t h i s s t u d y . F i v e of the s i x couple s had s p e c i f i c a l l y planned t h e i r p r e g n a n c i e s , t h e r e f o r e there was high a n t i c i p a t i o n of s h a r i n g t h e i r l i v e s wi th t h e i r i n f a n t s from e a r l y i n the pregnancy. Three of the coup le s had exper i enced p r e v i o u s f e t a l l o s s which may have i n c r e a s e d each c o u p l e ' s emotional investment i n the s u r v i v a l of t h i s c h i l d . C o n s i d e r a b l e energy was put i n t o a safe passage fo r the c h i l d both by parents who suspected a problem and by those who had no reason to b e l i e v e t h a t problems would a r i s e . A mother who knew d u r i n g pregnancy tha t her baby ' s s u r v i v a l was doubt fu l f e l t tha t she had to do a l l she c o u l d fo r her baby ' s sake: 24 Mother : A l l the time I had to keep d r i n k i n g mi lk and t a k i n g v i t a m i n s and being hea l thy and doing a l l those t h i n g s because maybe the baby was going to be a l l r i g h t . In c o n s i d e r i n g d i a g n o s t i c t e s t s one couple s t a t e d t h a t the c h i l d ' s s a fe ty took precedence over the va lue of knowing the c o n d i t i o n of the c h i l d . F a t h e r : They were prepared to go to the ex tent of i n s e r t i n g a probe and s n i p p i n g a p i ece of the baby ' s s k i n and then s t u d y i n g tha t under a microscope to see i f i t had the same t h i n g t h a t [ the f i r s t baby] had. So there was a c e r t a i n amount of e x p e r i m e n t a t i o n t h a t was going to take p l a c e . And each experiment of course added to the r i s k and we had to determine whether we would go as f a r as we had t o , or c o u l d go, to help any fu ture b a b i e s , ours or o t h e r s , but we w e r e n ' t prepared to i n c r e a s e the r i s k to our c u r r e n t baby i n any way, shape or form. The process of p a r e n t - i n f a n t bonding t h a t occurs at b i r t h has been emphasized by Klaus and Kenne l l (1982) but as Peppers and Knapp (1980) and K i r k (1984) p o i n t o u t , there i s d i r e c t ev idence of a f f e c t i o n a l t i e s d e v e l o p i n g e a r l y i n pregnancy. The b i n d i n g i n process was d e s c r i b e d by one mother i n the f o l l o w i n g way: 25 Mother : I th ink tha t people d o n ' t . . . r e a l i z e t h a t almost from the time of c o n c e p t i o n , or a l i t t l e b i t l a t e r when we saw the f i r s t u l t r a s o u n d p i c t u r e at twelve weeks, t h a t baby became very rea l to us , and tha t you k ind of became parents from t h a t p o i n t . . . I t h i n k the moment of d e l i v e r y i s a c o n f i r m a t i o n t h a t y e s , t h a t ' s r i g h t ! But you advocate f a r before t h a t . And I t h i n k your own maternal c a r e , y o u ' r e s ay ing " Y o u ' r e not born y e t , but I s t i l l care about y o u " type of t h i n g . One mother r e a l i z e d the importance of b i n d i n g i n to her unborn c h i l d and expressed an awareness tha t t h i s was not happening f o r e i t h e r h e r s e l f or her husband. Mother : I remember s ay ing to [husband] r i g h t at the b e g i n n i n g , I c a n ' t get i n touch wi th t h i s baby, I d o n ' t know what i t i s , but I c a n ' t get i n touch with t h i s baby. . . . And when I was t r y i n g to get the baby to turn head down, I kept h e a r i n g i n the back of my mind, no, i t ' s not safe fo r t h i s baby to be b o r n . I t was s o r t o f , I j u s t knew. I wasn ' t scared of i t , I j u s t knew. [Husband] c o u l d n ' t get i n t o the pregnancy at al 1 . B i n d i n g i n o c c u r r e d fo r the couple who had not wanted another c h i l d and had t h e r e f o r e not planned t h i s pregnancy. 26 Mother : By the time one has got to the t h i r d or f o u r t h month, you know, y o u ' r e very r e s i g n e d to [hav ing another baby] and i n f a c t we had a complete turn around and were r e a l l y l o o k i n g forward to i t . . . . F a t h e r : We had a c t u a l l y , you know, s o r t of equipped o u r s e l v e s m e n t a l l y and p h y s i c a l l y fo r t h i s new baby. In each ca se , the bonding t h a t had o c c u r r e d d u r i n g pregnancy and up to the time the c h i l d had d ied was between the parents and t h i s p a r t i c u l a r c h i l d . They saw the c h i l d as an i n d i v i d u a l i n h i s or her own r i g h t and not someone who c o u l d be r e p l a c e d by a fu ture c h i l d or by a c h i l d they p r e s e n t l y had. Because of the p h y s i c a l and emotional p r e p a r a t i o n and the high a n t i c i p a t i o n of parenthood , the r e a l i z a t i o n t h a t the baby had d ied or was very l i k e l y to d ie came as a severe shock to the p a r e n t s . One mother d e s c r i b e d the c o n t r a s t of e x p e c t i n g the c h i l d and then l o s i n g the e x p e c t a t i o n s : Mother : A n t i c i p a t i n g parenthood i s not j u s t see ing the c h i l d i n f r o n t of you t h a t you are going to h o l d , i t ' s a l l k inds of dreams. And they are a l l j u s t . . . s h a t t e r e d . Another mother d e s c r i b e d d r a m a t i c a l l y the impact of her c h i l d ' s impending dea th : 27 Mother : I t landed as a bombshell and our l i v e s went on hoi d . A c c o r d i n g to Davidson (1984) , pregnancy i s normal ly a time when both the mother and f a t h e r o r g a n i z e t h e i r l i v e s around the e x p e c t a t i o n of a c h i l d . The couple s i n t h i s study showed ev idence of concern fo r safe passage of the c h i l d and took measures to ensure safe passage d u r i n g pregnancy. A concern about b i n d i n g i n to the unborn c h i l d was a l so e v i d e n t as a p r e p a r a t i o n fo r parenthood . The i n f a n t ' s death brought to an end the hopes of a fu ture wi th the c h i l d . The Persona l Exper i ence of G r i e f What happens when the hopes are s h a t t e r e d , when p r e p a r a t i o n i s no longer r e q u i r e d , when the whole process of p h y s i o l o g i c a l , emotional and p h y s i c a l p r e p a r a t i o n i s c u r t a i l e d by the death of the baby? One mother d e s c r i b e d the exper i ence in the f o l l o w i n g way: Mother : The word s h a t t e r e d . . . d e s c r i b e s i t b e a u t i f u l l y because i t ' s something t h a t happens l i k e bang, l i k e t h a t , something t h a t you had taken the time to spend t h i n k i n g l o v e l y thoughts about . The word s h a t t e r e d a l so makes me t h i n k of something being broken i n thousands of p i e c e s and t h a t ' s what you f e e l l i k e . 28 Al though the death of an i n f a n t before or s h o r t l y a f t e r b i r t h has s i m i l a r i t i e s to o ther major l o s s e s , p e r i n a t a l l o s s may be more complex. F a c t o r s t h a t exacerbate the g r i e f i n t h i s case i n c l u d e emotional attachment tha t parents have p r i o r to b i r t h , the hopes , e x p e c t a t i o n s and dreams fo r a fu ture t i e d up with the c h i l d tha t are dependent on the c h i l d ' s s u r v i v a l and the idea t h a t the l o s s i s of a pa r t of o n e s e l f as wel l as the l o s s of a separate person (Furman, 1978) . Severa l parents compared the death of a c h i l d wi th the death of a p a r e n t . Mother : [My f a t h e r ] d i e d over C h r i s t m a s . . . . I t ' s a d i f f e r e n t l o s s than your c h i l d r e n . I t ' s s t i l l very much a deep l o s s but i t ' s something you d o n ' t p lan l i k e you do wi th your c h i l d . Dreams, hopes. . . Another mother s t a t e d the comparison i n a more general way: Mother : They say , "The death of a parent i s the death of your past but the death of your c h i l d i s the death of your f u t u r e . " Saunders (1980) in a comparat ive study of a d u l t bereavement i n the death of a spouse, c h i l d and parent found tha t h i g h e r i n t e n s i t i e s of g r i e f were pre sent f o l l o w i n g the death of a c h i l d than f o l l o w i n g the death of a spouse or p a r e n t . Death of one ' s c h i l d may not be g iven as much 29 s i g n i f i c a n c e by s o c i e t y as the death of a person i n o ther c l o s e r e l a t i o n s h i p s . G r i e f , as d e f i n e d by C a r l s o n , i s "a complex combinat ion of numerous emotions f e l t at the time of l o s s " ( 1978, p . 8 7 ) . Attempts to under s t and , e x p l a i n and p r e d i c t g r i e f p a t t e r n s have l e d to the i d e n t i f i c a t i o n of s tages of g r i e v i n g by Bowlby and Parkes (1970) , Kub le r -Ros s (1969) and Lindeman (1944) . Al though these t h e o r i s t s acknowledge t h a t g r i e v i n g i s i n d i v i d u a l and t h a t not a l l people go through a l l s tages or go through the stages i n the order o u t l i n e d , there i s a tendency i n the a p p l i c a t i o n of the theory to expect a l l of the stages and expect them i n the order d e s c r i b e d . For example, J ensen , Benson and Bobak i n t h e i r 1981 m a t e r n i t y n u r s i n g t e x t s t a t e , " In the face of a l o s s or the t h r e a t of a l o s s , the p e r s o n ' s r e a c t i o n s f o l l o w a p r e d i c t a b l e p a t t e r n " (p . 23 ) . L indeman's three phases and K u b l e r - R o s s ' s f i v e stages are then o u t l i n e d . C a l l a h a n , Bra s t ed and Granados s t a t e t h a t i n d i v i d u a l v a r i a t i o n i n g r i e f response i s " p r o b a b l y more the r u l e than the e x c e p t i o n " (1983, p . 156) . Murphy (1983) addresses the c o m p l e x i t y of the bereavement process and from her e x t e n s i v e review of the l i t e r a t u r e conc ludes t h a t bereavement i s a m u l t i v a r i a t e phenomenon. The poignant nature of pa ren ta l g r i e f i s c ap tured by A r n o l d and Gemma (1983) : 30 The nature of g r i e f on the death of a c h i l d cannot be adequate ly d e s c r i b e d ; no schema can c o n t a i n i t . I t s breadth and depth defy d e s c r i p t i o n . G r i e v i n g i s a cont inuous p r o c e s s , wi th peaks , v a l l e y s , and p l a t e a u s . I t i s a complex process t h a t i s bound to the i n d i v i d u a l who g r i e v e s u n i q u e l y l i k e none o t h e r . . . . How can we d e s c r i b e something so profound t h a t c louds our minds and numbs our senses? (p . 34) Dimensions of g r i e f The parents i n the study d i s c u s s e d f e e l i n g s of shock, numbness, d i s b e l i e f , anger , g u i l t and a grea t deal of sadness and pain i n r e a c t i o n to the l o s s or threa tened l o s s of t h e i r c h i l d . There was no ev idence of a p a r t i c u l a r p r o g r e s s i o n or of a l l coup le s e x p e r i e n c i n g a l l of the i d e n t i f i e d emot ions . Reac t ions to the l o s s of an i n f a n t w i l l t h e r e f o r e be d i s c u s s e d as dimensions of g r i e f r a t h e r than stages or phases of g r i e f . Shock, numbness, d i s b e l i e f . Al though l i t e r a t u r e i n d i c a t e s t h a t most expectant parents have f ear s about the h e a l t h of t h e i r unborn i n f a n t s (Klaus and K e n n e l l , 1982), t h i s f ear does not appear to prepare them for the a c t u a l event of death or impending dea th . The parents i n the study expressed shock at the death of t h e i r i n f a n t or at the knowledge tha t t h e i r i n f a n t 31 was not expected to l i v e . One mother t a l k e d about the i n i t i a l r e a c t i o n : Mother : I was j u s t d e s p e r a t e l y upset and I t h i n k [ to husband] you were i n shock a c t u a l l y , w e r e n ' t you? I mean i t was j u s t such a shock, you know, at seven months pregnancy to suddenly d i s c o v e r t h a t the baby has d i e d . A f a t h e r i n d i c a t e d a l ack of f e e l i n g at the time of h i s t w i n s ' dea th : F a t h e r : [I was] p r e t t y much numb and i n shock. Not too many s e n s a t i o n s of any k i n d . The parents who had a l r eady l o s t one c h i l d as a r e s u l t of a g e n e t i c d i s o r d e r were aware of the p o s s i b i l i t y of the second c h i l d having the same problem but were s t i l l shocked by the r e a l i t y of the second c h i l d ' s dea th : Mother : Somehow you go around and you d o n ' t expect tha t i t w i l l happen twice i n a row. The couple who knew of the baby ' s c r i t i c a l c o n d i t i o n d u r i n g pregnancy t a l k e d of the g r i e v i n g p r i o r to the baby ' s death and d i s c u s s e d the absence of the r e a c t i o n of shock at the time of dea th . 32 Mother : For the l a s t b a s i c four months of the pregnancy we knew. We knew tha t t h i n g s probably w e r e n ' t going to work o u t . So a f t e r she d i e d , the nurses c o u l d n ' t unders tand why we w e r e n ' t f a l l i n g a p a r t , but we had a l r e a d y , F a t h e r : We had a l r eady f a l l e n a p a r t , Mother : We had f a l l e n apar t and g r i e v e d and e v e r y t h i n g , and i t a lmost seemed l i k e t h i s was the c o n c l u s i o n , t h i s was i t , you know. We g r i e v e d a f t e r tha t t o o , but i t was a d i f f e r e n t k i n d of g r i e v i n g , but i t wasn ' t shock. F e e l i n g s of numbness, d i s b e l i e f and d e n i a l were a par t of the i n i t i a l r e a c t i o n of shock. These f e e l i n g s have s i m i l a r i t i e s i n t h a t they a l l are mechanisms to delay a f u l l r e a l i z a t i o n of the impact of the l o s s . D i s b e l i e f was expressed by one mother : When t h i s s t a r t e d happening i t took us a w h i l e to b e l i e v e . I t took me a w h i l e to b e l i e v e t h i s was r e a l l y happening . You j u s t d o n ' t , the idea of a baby dy ing i s f a r from you anyway. Numbness and d e n i a l are cap tured i n t h i s woman's r e f l e c t i o n s on her f e e l i n g s f o l l o w i n g knowledge of the death of her baby i n u t e r o : 33 Mother : So I went fo r f i v e weeks wi th the baby dead, and i t was p r e t t y tough , I mean fo r four weeks I walked around l i k e a zombie, not f e e l i n g a n y t h i n g . The only t h i n g I f e l t was t h i n g s i n my head. The r e s t of me was k ind of not t h e r e . . . . The day a f t e r I ' d been to the h o s p i t a l and found the baby was dead I was j u s t so beyond myse l f I d i d n ' t know what to do. . . . I c o u l d n ' t even look at myse l f i n the m i r r o r . I ' d look at my f a c e , the r e s t of me I d i d n ' t want to know i t was t h e r e , I j u s t wanted to t r y to f o r g e t i t . The i n i t i a l r e a c t i o n of shock a l lows fo r a gradual r e a l i z a t i o n of the meaning of the l o s s and how i t w i l l a f f e c t the l i f e of the bereaved . I t a l lows fo r the i n c o r p o r a t i o n of g r i e f i n t o l e r a b l e amounts. The p e r i o d of shock has been d e s c r i b e d as a cush ion or a p r o t e c t i o n from the i n t e n s e pain of the l o s s tha t a l l ows time fo r r e a l i t y to penet ra te awareness ( M i l e s , 1984). T h i s was e v i d e n t i n one woman's s ta tement , " I t f e l t l i k e a dream at t h a t p o i n t , knowing i t was going to h i t me l a t e r but i t r e a l l y h a d n ' t y e t . " G u i l t . In a t tempt ing to make sense of the death or impending death of t h e i r b a b i e s , most parents found they had to deal with f e e l i n g s of g u i l t . Causa t ion g u i l t d e s c r i b e d by M i l e s 34 (1984) and by C a l l a h a n et a l . (1983) occurs as parents are t r y i n g to understand the cause of the d e a t h . "They o f ten t h i n k about ways i n which they may have caused or c o n t r i b u t e d to the death by s i n s of omis s ion or commiss ion" ( M i l e s , 1984, p . 2 2 8 ) . One mother t a l k e d of the g u i l t f o l l o w i n g sudden i n f a n t death syndrome: Mother : We found i t extremely h a r d . My whole t h i n g was t h a t I had done something wrong. . . . But you know, we were both j u s t t o t a l l y shocked. . . . Another mother who had pressed fo r a v a g i n a l d e l i v e r y r a t h e r than a caesarean s e c t i o n d e s c r i b e d the overwhelming f e e l i n g of g u i l t : Mother : The g u i l t around tha t p lace was enormous fo r everybody because we thought i t was the b i r t h t h a t had done i t . . . . And I'm going o h , my gosh, here we've made the wrong d e c i s i o n , and the g u i l t , oh , God, i t was a w f u l , wasn ' t i t ? I t ' s l i k e here I put so much e f f o r t i n t o t h i s pregnancy and t h i s b i r t h and then something l i k e t h i s happens. The mother i n the couple who had not planned t h i s pregnancy d e s c r i b e d her f e e l i n g s of g u i l t and the sadness tha t accompanied i t : 35 Mother : You do s o r t of go through t h i s t h i n g of d i d I have a d r i n k too many, d i d I. . . . I remember f e e l i n g g u i l t y and sad t h a t the baby had d ied and we had s o r t of wished i t not to be there i n the f i r s t p lace i n i t i a l l y . . . . But a f t e r the baby was b o r n , I guess I s t i l l had a l i t t l e b i t of t h a t . I was so sad about i t . The ba s i s of the g u i l t f e l t by the parents i n t h i s study appeared to be r e l a t e d to the p o s s i b i l i t y of an u n w i t t i n g par t i n the c h i l d ' s dea th . G u i l t i s an emotion turned inward whereas anger i s o f ten d i r e c t e d toward o t h e r s . Anger . Anger i s an emotion t h a t i s commonly expressed i n bereavement ( K u b l e r - R o s s , 1969 , Lindeman, 1944). The anger may be d i r e c t e d at h e a l t h care p r o f e s s i o n a l s , at people i n the s o c i a l support system, or at the person who has d i ed ( M i l e s , 1984) . F e e l i n g s of anger toward t h e i r i n f a n t s were not expressed by the parents i n t h i s s tudy . One coup le t a l k e d of the anger they f e l t about having to go through the e x p e r i e n c e : Mother : I found i t very hard to deal with and I c r i e d a l o t . . . I was very angry , I was, what d i d I do t h a t t h i s should be happening? 36 The anger t h a t most of the s u b j e c t s t a l k e d about was d i r e c t e d toward h e a l t h care p r o f e s s i o n a l s or toward people i n t h e i r support system. An awareness of the p o s s i b i l i t y of o v e r r e a c t i n g i n anger was d i s c u s s e d by one f a t h e r : F a t h e r : We have to be c a r e f u l t h a t we d o n ' t sometimes take out our f r u s t r a t i o n tha t our c h i l d r e n d i d n ' t l i v e on the medical f a c i l i t i e s . They p r o b a b l y , i f there i s an o b j e c t i v e p o i n t of view which I d o n ' t t h i n k we can have, the c o n c l u s i o n would be t h a t they d i d e v e r y t h i n g q u i t e proper and maybe a l i t t l e more s e n s i t i v i t y c o u l d have been shown at c e r t a i n t i m e s . But there i s a danger of t a k i n g out our own f r u s t r a t i o n s and t h a t ' s the only p lace to take i t . Al though anger has been i d e n t i f i e d as p a r t of g r i e v i n g there may be a tendency to d i s c o u n t the conten t of the anger when the parents have a v a l i d reason to be angry about the t reatment they have r e c e i v e d . In c o n t r a s t to the anger f e l t by most c o u p l e s , one couple i n d i c a t e d they had not e x p e r i e n c e d f e e l i n g s of anger . T h i s couple f e l t adequate ly supported by h e a l t h care p r o f e s s i o n a l s , by f r i e n d s and by each o t h e r . They r e f l e c t e d tha t " i n t h a t i t was an awful s i t u a t i o n , we had a good time of i t . " 37 Sadness and p a i n . The i n t e n s e g r i e f which parents exper i ence f o l l o w i n g the death of a c h i l d i n c l u d e s deep sadness and pa in ( M i l e s , 1984) . One couple d i s c u s s e d p l a n n i n g the pregnancy i n r e l a t i o n to the pa in f e l t : F a t h e r : I t was something we had been p l a n n i n g f o r . I guess i t hur t s even more i f you plan fo r i t . Mother : I t h u r t s , i t j u s t h u r t s . I t d o e s n ' t m a t t e r , p l a n n e d , unplanned , i t h u r t s . The pa in and s t r e s s of the l a b o r and d e l i v e r y was not r e l i e v e d by the presence of a baby as i t i s f o r most p a r e n t s . The p h y s i c a l and emotional s u f f e r i n g was expressed by the f o l l o w i n g mother : Mother : I t took a l o t out of me, e s p e c i a l l y having noth ing to show for i t . . . . I t was a tough t i m e . P h y s i c a l l y I was t o r t u r e d , I was r e a l l y t o r t u r e d . Bowlby and Parkes (1970) have d e s c r i b e d y e a r n i n g and s e a r c h i n g as a phase of the g r i e v i n g p r o c e s s . The purpose of t h i s y e a r n i n g and s e a r c h i n g behav ior may be an attempt to f i l l the v o i d caused by the l o s s and thereby ease the sadness and pa in the parents are f e e l i n g . One mother attempted to ease her severe pa in by c a l l i n g the c h i l d ' s name: 38 Mother : I remember I sat at the k i t c h e n t a b l e and I j u s t screamed and I h o l l e r e d and I c r i e d and I screamed [ c h i l d ' s name]. I j u s t screamed h i s name. Another mother expressed a q u i e t y e a r n i n g f o r her c h i l d when see ing the i n t i m a c y of which she was d e p r i v e d . Mother : Y o u ' l l be wa lk ing down the mall or something and you see a f a t h e r with a brand new baby or a mother j u s t c u d d l i n g or n u r s i n g her baby and i t ' s not an envy, i t ' s when I see t h a t happening , t h e y ' r e consumed by each o t h e r , the baby and the p a r e n t , i t ' s l i k e t h e y ' r e i n another w o r l d . I t i s a r ea l sadness to be m i s s i n g your own. I t b r i n g s home what y o u ' v e d e s i r e d . The d e s i r e to have t a n g i b l e ev idence of the c h i l d ' s l i f e and death was apparent i n the p a r e n t s ' e x p e r i e n c e s . C r e a t i n g memories was a way to show t h a t there i s a reason fo r the sadness and p a i n , t h a t the c h i l d l i v e d , was important and tha t the i n t e n s e g r i e f was v a l i d . Mother : You have to get your memories toge ther when y o u ' v e l o s t a newborn. You get as much toge ther as you c a n . T h a t ' s why I took p i c t u r e s of a b s o l u t e l y e v e r y t h i ng. The persona l exper i ence of l o s s and g r i e f f o r parents v a r i e d from person to person but was c h a r a c t e r i z e d by deep, 39 p a i n f u l emot ions . The personal exper ience was i n f l u e n c e d by the s o c i a l support r e c e i v e d through i n t e r p e r s o n a l i n t e r a c t i o n s o c c u r r i n g at the time of death and subsequent to the death of the c h i l d . The I n t e r p e r s o n a l Exper ience of G r i e f The r e a c t i o n s to the death of a c h i l d d e s c r i b e d i n the p r e v i o u s s e c t i o n d i d not occur i n i s o l a t i o n but were a f f e c t e d by the i n t e r a c t i o n s parents had with o ther s and wi th each o t h e r . The meaning of s i t u a t i o n s and e v e n t s , and the a b i l i t y to cope wi th s t r e s s f u l events i s developed through i n t e r a c t i o n w i t h i n the s o c i a l contex t (Charmaz, 1980). A c c o r d i n g to Dimond and Jones (1983) and Cobb (1976) , s o c i a l support d i r e c t l y a f f e c t s h e a l t h , p r o v i d e s a b u f f e r a g a i n s t the e f f e c t s of high s t r e s s , mediates the development of cop ing s t r a t e g i e s and so f tens the impact of s t r e s s f u l l i f e e v e n t s . The need to t a l k about the death or impending death of the i n f a n t and r e c e i v e support through the exper i ence was e v i d e n t in the exper i ences of a l l of the c o u p l e s . A r n o l d and Gemma have noted t h a t f a m i l i e s g r i e v i n g the l o s s of a c h i l d " r e c e i v e inadequate r e c o g n i t i o n fo r the i n t e n s i t y and s i g n i f i c a n c e of t h e i r l o s s " (1983 , p . 4 2 ) . T h i s may be because o ther s have not known the c h i l d , whereas the parents 40 have been i n t i m a t e l y connected with the c h i l d throughout pregnancy. I n t e r a c t i o n s o c c u r r e d on three f r o n t s : wi th h e a l t h care p r o f e s s i o n a l s , wi th f r i e n d s and f a m i l y of the couple and w i t h i n the couple i t s e l f . Hea l th care p r o f e s s i o n a l s and the h e a l t h care system r e p r e s e n t the p r o f e s s i o n a l s e c t o r i n K l e i n m a n ' s c u l t u r a l system model (1978) , w h i l e the f r i e n d s , f a m i l y and spouse are a pa r t of the popular s e c t o r . The f o l k s e c t o r i n K l e i n m a n ' s model was not i d e n t i f i e d as par t of the p a r e n t s ' e x p e r i e n c e . I n t e r a c t i o n s with Hea l th Care P r o f e s s i o n a l s In Canada the h e a l t h care system has become i n t i m a t e l y i n v o l v e d i n pregnancy, l a b o r and d e l i v e r y . Due to the c r i t i c a l c i r c u m s t a n c e s su r round ing the deaths or impending deaths of the i n f a n t s , i n t e r a c t i o n s with h e a l t h care p r o f e s s i o n a l s were a s i g n i f i c a n t pa r t of the study p a r e n t s ' e x p e r i e n c e . Desp i te the advance of t echnology r e l a t e d to p e r i n a t a l c a r e , the i n t e r p e r s o n a l a spect r a t h e r than the t e c h n o l o g i c a l a spect was the focus of the p a r e n t s ' comments. Chapman and Chapman (1983) take the stand tha t the i n t e r p e r s o n a l a c t i o n s and r e a c t i o n s o c c u r r i n g d u r i n g the u t i l i z a t i o n of technology determine whether h e l p i n g has o c c u r r e d . They go on to s t a te t h a t " e f f e c t i v e h e l p i n g i s u l t i m a t e l y d e f i n e d by the p a t i e n t s " (p . 50 ) . T h i s v i e w p o i n t i s c o n s i s t e n t with 41 K l e i n m a n ' s c u l t u r a l system model which d i r e c t s h e a l t h care p r o f e s s i o n a l s to e l i c i t the p e r c e p t i o n s of i l l n e s s and care from the p a t i e n t s themselves (1978) . For a l l the study c o u p l e s , the i n t e r a c t i o n s wi th h e a l t h care p r o f e s s i o n a l s had both p o s i t i v e and negat ive a s p e c t s . Three i s sue s addressed by parents were (1) i n f o r m a t i o n s h a r i n g , (2) d e c i s i o n making, and (3) s e n s i t i v i t y to the p a r e n t s ' needs , f e e l i n g s and e x p e r i e n c e . In format ion s h a r i n g . S o c i a l support has been d e f i n e d by Cobb as i n f o r m a t i o n l e a d i n g one to b e l i e v e tha t he or she i s cared fo r and l o v e d , esteemed and a member of a network of mutual o b l i g a t i o n s (1976) . In i n t e r a c t i o n s wi th h e a l t h care p r o f e s s i o n a l s , s h a r i n g of i n f o r m a t i o n i n an a p p r o p r i a t e l y s e n s i t i v e manner he lped parents f ee l they were a pa r t of the mutual o b l i g a t i o n s , and tha t they were esteemed and va lued enough to be a pa r t of the h e a l t h care p r o c e s s . The parents needed i n f o r m a t i o n to help them unders tand and make sense of the s i t u a t i o n . Knowing the c o n d i t i o n of t h e i r i n f a n t and knowing the causes of death helped them to grasp and accept the r e a l i t y of the d e a t h . An example f o l l o w s of one couple who exper i enced the u n w i l l i n g n e s s of u l t r a s o u n d t e c h n i c i a n s and doc tor s to share i n f o r m a t i o n : 42 F a t h e r : I c o u l d see t h a t they c o u l d n ' t f i n d what they were l o o k i n g fo r and when we asked them some q u e s t i o n s , they w o u l d n ' t g ive us d i r e c t answers . . . . When we t r i e d to get the i n f o r m a t i o n out of the doc tor s themse lves , those tha t had the r e s p o n s i b i l i t y and were a b l e , were a c t u a l l y i n the p o s i t i o n to g ive more i n f o r m a t i o n than the t e c h n i c i a n s , they d i d n ' t , they would clam up. I t turned a good exper ience to a r e a l l y bad one. Another c o u p l e , whose c h i l d was a v i c t i m of sudden i n f a n t death syndrome had d i f f i c u l t y o b t a i n i n g an autopsy r e p o r t . Having t h i s i n f o r m a t i o n was p a r t i c u l a r l y important fo r these parents to ease t h e i r g u i l t about the dea th . Mother : We got the f i r s t autopsy r e p o r t back. What happened was the doc tor went on h o l i d a y s . We went and asked fo r the autopsy r e p o r t and they s a i d , " O h , s u r e . " They made a photocopy of i t and we got i t . The second f i n a l autopsy r e p o r t was to come l a t e r on , so I phoned back to the d o c t o r ' s o f f i c e about a month l a t e r and asked them to send a photocopy of [ c h i l d ' s ] autopsy r e p o r t . And the person s a i d , "Oh n o , " and I s a i d "Why not?" and she s a i d , "Because y o u ' r e not e n t i t l e d to see i t . " And I s a i d , "I beg your pardon , why n o t ? " . . . And she s a i d , " W e l l , you should never have got ten the f i r s t one, t h a t ' s our p r o p e r t y . " I was r e a l l y upse t , 43 so I phoned the c o r o n e r ' s o f f i c e , and the c o r o n e r , she s a i d , "He was your son , y o u ' r e e n t i t l e d to see whatever you want to s e e . " To t h i s day I c a n ' t see why they r e f u s e d . But i t bothered me, i t bothered me t e r r i b l y . Parents f e l t a need to understand the c o n d i t i o n of t h e i r c h i l d and the p o s s i b i l i t y of a r e c u r r e n c e i n another c h i l d . As most of the deaths i n t h i s study were the r e s u l t of r e l a t i v e l y unknown and uncommon syndromes, i n f o r m a t i o n was not r e a d i l y a v a i l a b l e to the p a r e n t s . Parents t h e r e f o r e needed i n f o r m a t i o n from p r o f e s s i o n a l s about the c o n d i t i o n s and about the p a r t i c u l a r m a n i f e s t a t i o n i n t h e i r c h i l d . One f a t h e r d e s c r i b e d h i s f r u s t r a t i o n at the delay i n r e c e i v i n g i n format i on : F a t h e r : We were t r y i n g to make a d e c i s i o n whether to have another c h i l d and the d e c i s i o n r e q u i r e d i n p u t from g e n e t i c s . And we c o u l d n ' t make t h a t d e c i s i o n i f we d i d n ' t have t h a t i n f o r m a t i o n and i t was very f r u s t r a t i n g . A very d i f f i c u l t t i m e . I t was as i f t h i s c h i l d has d i e d , we have lab work and we have t h i s to do fo r the l i v i n g , when we get around to i t , w e ' l l do t h a t . In commenting g e n e r a l l y about the a v a i l a b i l i t y of i n f o r m a t i o n to p a r e n t s , one couple f e l t they had an advantage but were concerned about o ther s who d i d not have a 44 background i n h e a l t h or were not as a g g r e s s i v e about g e t t i n g i n f o r m a t i o n . L e a v i t t (1982) a l so expresses t h i s concern i n her o b s e r v a t i o n t h a t " l a c k of o r i e n t a t i o n to even the s i m p l e s t r o u t i n e s and surroundings keeps the p a t i e n t and f a m i l y from a s s e r t i n g even a modicum of independence" (p . 38 ) . F a t h e r : A l o t of people d o n ' t even know what to ask, a l o t of t h i n g s are new to them. They d o n ' t have a medical background l i k e [ w i f e ] does , and they knew t h a t I r e q u i r e d answers and I l e t them know t h a t , they gave i t . But i t ' s not an automatic system. They d o n ' t a u t o m a t i c a l l y help you o u t . You have to e s t a b l i s h tha t and a l o t of people d o n ' t know how. Mother : I t h i n k you sometimes f e e l , and even more so people who d o n ' t know what to ask, f ee l at the mercy of the system, because I know we d i d and we were g e t t i n g answers . I can wel l imagine what people would f e e l l i k e tha t j u s t had to take one day at a time depending on whether the doc tor f e l t l i k e t e l l i n g them t h a t , or thought he s h o u l d , or whatever . Some of the parents had not exper i enced a l o s s of t h i s magnitude before and were amazed at the i n t e n s i t y and d u r a t i o n of t h e i r f e e l i n g s . C a l l a h a n et a l . (1983) note tha t i n f a n t death o f ten occurs at a time i n p a r e n t s ' l i v e s when death has not y e t become a f requent e v e n t . As wel l as 45 i n f o r m a t i o n d e s i r e d about the c o n d i t i o n s of the i n f a n t s , these parents i n d i c a t e d a need fo r i n f o r m a t i o n about the g r i e v i n g p r o c e s s . F a t h e r : Most people want to have you c a r r y on the g r i e f r a t h e r than show you how to get over i t , show you how to help y o u r s e l f . The people i n the medical p r o f e s s i o n want to be ab le to see you g r i e v i n g r i g h t i n f r o n t of them r a t h e r than g i v i n g you h i n t s and g i v i n g you a id s to get over i t . The f o l l o w i n g couple i d e n t i f i e d one person i n the h e a l t h care system who had g iven them v a l u a b l e i n f o r m a t i o n about g r i e f , but i n d i c a t e d t h a t e a r l i e r access to the i n f o r m a t i o n would have been h e l p f u l : Mother : The g e n e t i c s p e c i a l i s t t r i e d to help us r e a l i z e the g r i e v i n g process ' , what was i n v o l v e d i n the g r i e v i n g p r o c e s s , which nobody e l s e had d i s c u s s e d b e f o r e . F a t h e r : But tha t wasn ' t u n t i l some months a f t e r , two, three months. Parents d i d not i n d i c a t e t h a t they were g iven too much i n f o r m a t i o n or t h a t i n f o r m a t i o n g iven was overwhelming i n t h e i r emotional s t a t e . Hea l th care personnel may w i t h h o l d i n f o r m a t i o n because they p e r c e i v e t h a t c l i e n t s cannot t o l e r a t e i t . C a l l a h a n et al . ( 1983) see w i t h h o l d i n g of 46 i n f o r m a t i o n as a f u n c t i o n of the h e a l t h care p r o f e s s i o n a l ' s own d e n i a l r a t h e r than the p a r e n t s ' needs. One couple who d e s i r e d open, honest communication with h e a l t h care p r o f e s s i o n a l s was able to i n i t i a l l y set the stage fo r t h i s : F a t h e r : [Wife] was p r e t t y knowledgeable so maybe we had an u n f a i r advantage . We l e t them know r i g h t o f f the bat tha t we would not t o l e r a t e any w i t h h o l d i n g of i n f o r m a t i o n or c o l o r i n g i t i n a f a s h i o n t h a t was [ p e r c e i v e d to be] more t o l e r a b l e f o r us . One mother viewed her d o c t o r ' s complete s h a r i n g p o s i t i v e l y d e s p i t e the c r i t i c a l s t a te of her i n f a n t ' s h e a l t h : Mother : My doc tor always l e t me read a l l the r e p o r t s tha t came i n . She b e l i e v e d i n 100% s h a r i n g and she i n c l u d e d [husband] . Adequate i n f o r m a t i o n was e s s e n t i a l f o r pa ren ta l d e c i s i o n making to occur i n c o n j u n c t i o n wi th the h e a l t h care personnel i n v o l v e d . D e c i s i o n making. Parents saw the time of t h e i r i n f a n t ' s death as a time when many d i f f i c u l t d e c i s i o n s had to be made. They accepted t h i s d e c i s i o n making r o l e as both t h e i r r i g h t and t h e i r r e s p o n s i b i l i t y and wanted to be i n v o l v e d in the d e c i s i o n s 47 made by the h e a l t h care team. The Fetus and Newborn Committee of the Canadian P e d i a t r i c S o c i e t y s t a t e s tha t " i n v o l v e m e n t of the parents i n the d e c i s i o n - m a k i n g process i s e s s e n t i a l and may a s s i s t them i n t h e i r subsequent g r i e v i n g " (1983, p. 337) . The way i n f o r m a t i o n was g iven to the parents was a f a c t o r i n the d e c i s i o n s made. L o v e l l , i n her 1983 study of i d e n t i t i e s of mothers and babies i n p e r i n a t a l l o s s , observes tha t women "took cues from the exper t s who a l so p l ayed a c r u c i a l p a r t i n d e f i n i n g the s i t u a t i o n " (p . 756) . Going a long with what seemed to be expected was e v i d e n t i n t h i s f a t h e r ' s account : F a t h e r : They asked me what we wanted done, but to t h a t p o i n t nobody had even warned me of the p o s s i b i l i t i e s . There was no time to s o r t of dec ide between us what we wanted done or even ask the adv ice of our f a m i l i e s or f r i e n d s or a n y t h i n g . I t ' s s u d d e n l y , there at the h o s p i t a l , j u s t d e l i v e r e d a s t i l l b o r n , do you want a p r i v a t e b u r i a l or do you want us to d i spose of the body? And I'm s t and ing there and I'm i n a complete [ s i c ] , f e e l i n g s i c k and, God, what ' s happening to me, and I j u s t say wel l d i spose of the body, get t h i s out and f i n i s h e d wi th as soon as p o s s i b l e . . . . But my idea i s tha t I was asked to make a d e c i s i o n [when] I d i d n ' t r e a l l y know the consequences of what I was i n t o . 48 D e c i s i o n making throughout the exper i ence of the l o s s of a c h i l d was done e i t h e r by p r o f e s s i o n a l s only or i n c o n j u n c t i o n with the p a r e n t s . The d e c i s i o n making done by p r o f e s s i o n a l s o f ten i n v o l v e d c o n f l i c t i n g o p i n i o n s t h a t l e d to f r u s t r a t i o n and decreased con f idence on the par t of the p a r e n t s . Mother : That l i t t l e glimmer of hope i s the k i l l e r , because our d o c t o r , and a l l the o b s t e t r i c i a n s she t a l k e d to s a i d , " H o l d o f f , d o n ' t induce l a b o r . The longer t h a t your p a t i e n t i s to term, the b e t t e r i t i s . " The u l t r a s o u n d people at the end of December s a i d , " T h i s baby i s going to d i e , induce l a b o r , i t ' s a ' f a i t a c c o m p l i . ' " But I guess o b s t e t r i c i a n s have a s l i g h t l y d i f f e r e n t bent . The study parents expected to be i n v o l v e d i n the d e c i s i o n making p r o c e s s . Hea l th care p r o f e s s i o n a l s may, however, f e e l t h a t p r o t e c t i n g and s h i e l d i n g parents from having to make d i f f i c u l t d e c i s i o n s i s h e l p f u l . Davidson (1977) has c a l l e d t h i s p r o t e c t i v e tendency the " s u r r o g a t e s u f f e r i n g syndrome," a defense mechanism used by on looker s to decrease t h e i r own f e e l i n g s of h e l p l e s s n e s s . Tak ing d e c i s i o n s away from mourners adds to t h e i r s u f f e r i n g by i n c r e a s i n g t h e i r f e e l i n g s of h e l p l e s s n e s s and v u l n e r a b i l i t y . Howard and S t raus s see shared d e c i s i o n making as a pa r t of humanized h e a l t h care i n which p a t i e n t s " r e g a r d l e s s of t h e i r 49 e d u c a t i o n , have a r i g h t and perhaps a duty to p a r t i c i p a t e as much as p o s s i b l e i n d e c i s i o n s about t h e i r c a r e " (1972, p. 8 1 ) . One f a t h e r expressed h i s alarm at the l i f e and death d e c i s i o n made wi thout pa ren ta l i n p u t : F a t h e r : I t was a b i t scary to f i n d t h a t there are two d e f i n i t e p o s i t i o n s i n the h o s p i t a l . One says the baby d o e s n ' t have a hope and i f i t does i t ' s going to have a t e r r i b l e l i f e anyway so j u s t l e t i t d i e . The o ther says do what you can and d o n ' t take t h a t d e c i s i o n i n t o your own hands. There was a time when they had stopped f e e d i n g , they had stopped i n t r a v e n o u s and they were j u s t l e t t i n g her d i e . And t h a t p e r i o d was only about e ighteen hours when I r e a l i z e d what was going on and we immediate ly took very d e f i n i t e s teps and made i t known tha t we wanted her supported wi th at l e a s t oxygen and f l u i d s , o therwise y o u ' r e not even l e a v i n g room for a m i r a c l e . . . . They were medical meet ings , g r a n t e d , but they were d i s c u s s i n g the l i f e of our c h i l d ! And I c o u l d n ' t see any th ing t h a t they c o u l d d i s c u s s tha t was s e c r e t from us . What p o s s i b l e t h i n g c o u l d they be d i s c u s s i n g t h a t we s h o u l d n ' t be i n v o l v e d in? The f o l l o w i n g mother planned to be c o m p l e t e l y i n v o l v e d i n the d e c i s i o n s about her c h i l d ' s t r ea tment . Al though her mind was w h i r l i n g wi th a l l the t h i n g s going on , she s t i l l expected to make d e c i s i o n s r e g a r d i n g her c h i l d . 50 Mother : He s a i d , " H o p e f u l l y t h i s i s j u s t a temporary c o n d i t i o n , you know, h i s lungs c o u l d j u s t be immature or whatever . And he needs to go on the v e n t i l a t o r f o r a w h i l e . " And what was going through my mind was how much was I going to a l low them to do wi th h im. My mind was j u s t w h i r l i n g , t r y i n g to f i g u r e out what was going on and get e v e r y t h i n g s o r t e d o u t . Throughout the exper i ence of i n f o r m a t i o n s h a r i n g and d e c i s i o n making, parents were aware of how s e n s i t i v e h e a l t h care p r o f e s s i o n a l s were to them and to t h e i r c h i l d . The degree of s e n s i t i v i t y was s i g n i f i c a n t to how p o s i t i v e l y or n e g a t i v e l y parents viewed the e x p e r i e n c e . S e n s i t i v i t y to p a r e n t s ' needs, f e e l i n g s and e x p e r i e n c e . S e n s i t i v i t y to the parents a r i s e s from an a t t i t u d e of r e s p e c t fo r both the parents and the c h i l d . Respec t fu l t reatment i s a r i g h t t h a t p a t i e n t s should be able to expect ( S t o r c h , 1982). A c c o r d i n g to S t o r c h , t h i s r i g h t i s a moral one i n which the p r i n c i p l e s of b e n i f i c e n c e and f i d e l i t y are adhered t o . B e n i f i c e n c e means " t h a t one ac t s to b e n e f i t o ther s i n a way t h a t w i l l c o n t r i b u t e to t h e i r h e a l t h and w e l l - b e i n g " ( S t o r c h , p. 71 ) . F i d e l i t y " i s a v o l u n t a r y commitment of one person to a n o t h e r . . . p r e d i c a t e d on a genuine care and concern and a deep r e s p e c t f o r humanity" ( S t o r c h , p . 73 ) . T h i s idea of c a r e , concern and r e s p e c t fo r 51 humanity i s supported by Howard and S t r a u s s , who emphasize the va lue of empathy i n humanized h e a l t h c a r e : I f p r a c t i t i o n e r s c o n t a i n t h e i r sympathy and avo id see ing the wor ld from the vantage p o i n t of t h e i r p a t i e n t s , they cannot as r e a d i l y unders tand the needs of those p a t i e n t s and a p p r o p r i a t e l y respond to them as unique human b e i n g s . (1972, p.83) The s e n s i t i v i t y of h e a l t h care p r o f e s s i o n a l s was commented upon at l e n g t h by p a r e n t s . They addressed both p o s i t i v e and nega t ive a spects of which a l l parents had both i n t h e i r e x p e r i e n c e . The key aspect i n the i n t e r a c t i o n s was r e spec t fo r both the parents and the c h i l d , even i f the c h i l d had a l r eady d i e d . Respect fo r parents and c h i l d i n c l u d e d acknowledgement and r e c o g n i t i o n of each member of the f a m i l y . Seeing the f ami ly as a u n i t and under s t and ing t h a t the c h i l d i s a s i g n i f i c a n t par t of tha t f a m i l y , even a f t e r he or she has d i e d , he lped i n the empathic under s t and ing of the f a m i l y ' s e x p e r i e n c e . Most of the couple s found t h a t there was i n t e r a c t i o n with and concern f o r the mother but o f ten the f a t h e r was i g n o r e d or d i s r e g a r d e d . F a t h e r : The doc tor would come i n and address h e r . I ' d ask a q u e s t i o n and t h e y ' d answer the q u e s t i o n to h e r . The n u r s e s , some were good, o t h e r s , I was j u s t an 52 add-on, I r e a l l y d i d n ' t have any th ing to do with t h i s s i t u a t i o n . Even when I asked medical que s t ions about her h e a l t h , they s o r t of t r e a t e d me as though, what r i g h t have you to ask these q u e s t i o n s . In one c o u p l e ' s i n t e r a c t i o n wi th h e a l t h care p r o f e s s i o n a l s the mother was i g n o r e d : Mother : I f i r s t n o t i c e d t h a t they w o u l d n ' t t a l k to me but they would answer [husband ' s ] q u e s t i o n s . I was j u s t t h i s h y s t e r i c a l pregnant l a d y , r i g h t ? They would never t e l l us the t r u t h . Respect for the c h i l d was c o n s i d e r e d important by the p a r e n t s . Parents saw t h e i r c h i l d as a s i g n i f i c a n t person and they wished o ther s to do the same. One f a t h e r t a l k e d of the r a p i d i t y with which h e a l t h care personnel wanted to remove the ev idence of h i s c h i l d ' s l i f e : F a t h e r : When I went away fo r a couple hours s l e e p , a f t e r [ c h i l d ] had d i e d , [ w i f e ] was a l l doped and not capable of making any d e c i s i o n s , they had her s i gn a whole l o t of documents c o n c e r n i n g death c e r t i f i c a t e s , j u s t hours a f t e r . They wanted to get t h e i r books s t r a i g h t . The death c e r t i f i c a t e was s igned and [ c h i l d ] d i d n ' t have a name. His death c e r t i f i c a t e came with no name on i t , j u s t [ surname] . . . . They a l so suggested tha t they s imply put him through the h o s p i t a l 53 i n c i n e r a t o r where, they c a l l i t c remat ion but they s a i d , " D o n ' t worry , he would be burned with o ther human p a r t s " . . . . T h a t ' s the way they wanted to t r e a t our baby! And t h a t was s h o c k i n g ! That was denying the e x i s t e n c e of t h i s c h i l d . They j u s t wanted to whisk i t away. I t d i d n ' t happen. I t d i d happen! I t d i d happen ! I t ' s r ea l ! Another f a t h e r i n d i c a t e d the ca sua lnes s wi th which the c h i l d ' s memory was t r e a t e d by the doc tor and shared h i s own p e r c e p t i o n s of the c h i l d ' s p lace i n the l i v e s of h i m s e l f and h i s w i f e . F a t h e r : Our f a m i l y p h y s i c i a n , he came by and i t was almost as i f we had l o s t a g o l f b a l l , you know, reach i n t o your bag and f i n d another one, f o r g e t the one you l o s t . W e l l , we w e r e n ' t going to l e t t h a t go by so we stopped him r i g h t t h e r e . No we d o n ' t f o r g e t , no we d o n ' t put t h i s behind us , t h i s has a s p e c i a l p l ace i n our l i v e s , t h i s baby was a l i v e fo r three hours and we l i v e d with her from the time she was c o n c e i v e d u n t i l the time she d i e d , and t h i s i s not something you can put out of your mind . Respect fo r the f a m i l y was shown i n h e a l t h care p r o f e s s i o n a l s ' openness and w i l l i n g n e s s to t a l k i n a c a r i n g s u p p o r t i v e manner as wel l as in t h e i r a b i l i t y to sense when 54 parents needed to be a l o n e . One woman i d e n t i f i e d h e l p f u l c h a r a c t e r i s t i c s as c a r i n g , w i l l i n g n e s s to answer q u e s t i o n s , and fu ture a v a i l a b i l i t y : Mother : My g y n e c o l o g i s t was e x c e l l e n t . He had been with me through a l l of my p r e g n a n c i e s . I was r e a l l y impres sed . I went i n t o h i s o f f i c e j u s t fo r a checkup. He took the time to c a l l [husband] and he sat us both down and t a l k e d to us , and to me tha t was a p r o f e s s i o n a l . He c a r e d , he r e a l l y c a r e d . And i f we had any ques t ions or i f we needed any th ing as f a r as reas surance or whatever , he was there and he s t i l l i s t h e r e . The f o l l o w i n g comment i n d i c a t e s t h a t a s u p p o r t i v e a t t i t u d e on the par t of nurses may be more important than t h e i r knowing what to say . T h i s woman and her husband s i n g l e d out one nurse i n p a r t i c u l a r f o r her a b i l i t y to sense the p a r e n t s ' need fo r q u i e t r e s p e c t f u l suppor t : Mother : Everybody was so s u p p o r t i v e , they were k i n d , they were e m p a t h e t i c , I'm t h i n k i n g p a r t i c u l a r l y of the nurse who was wi th Dr . K. d u r i n g the i n d u c t i o n s and the d e l i v e r y . She was f a n t a s t i c . She d i d not t a l k much, but j u s t her very presence was s u p p o r t i v e , her s i l e n c e was s u p p o r t i v e . I t was amazing. . . . you j u s t f e l t her empathy. There wasn ' t much i n t e r a c t i o n [wi th the 55 nurses ] and I welcomed t h a t . They probably r e a l i z e d t h a t . I r e a l l y wanted to be a l o n e . As i n d i c a t e d i n the s e c t i o n on d e c i s i o n making, parents wanted to be seen as a c t i v e p a r t i c i p a n t s i n the c h i l d ' s c a r e , with the s t a f f open to t h e i r o p i n i o n s , f e e l i n g s and knowledge of the s i t u a t i o n . An example f o l l o w s where t h i s was not the ca se : F a t h e r : So nobody l i s t e n e d to us and t h a t ' s so hard when they d o n ' t l i s t e n and they d o n ' t do you the cour te sy of r ead ing your c h a r t , you know, those types of t h i n g s mean a l o t when y o u ' r e going through t h i s . And they d o n ' t unders tand t h a t y o u ' r e upse t . Parents a l so wanted those i n v o l v e d i n t h e i r care to be aware of the i n f o r m a t i o n a v a i l a b l e fo r t h e i r c a se . Mother : [The p u b l i c h e a l t h nurse] came i n and j u s t s o r t of sat there and I t o l d her about the b i r t h . I s a i d , "Do you know why they d i e d ? " because she s o r t o f , she s t a r t e d say ing something about i n t r a u t e r i n e growth r e t a r d a t i o n , and t h a t bugged me! That they would t e l l her t h a t , because to me at tha t p o i n t [ i t ] was l i k e say ing tha t I h a d n ' t taken care of myse l f f o r my baby. I know t h a t ' s not the only r e a s o n , but i t ' s one of the good ones , smoking or whatever , so t h a t bugged me tha t she d i d n ' t know. I t ' s not her f a u l t . 56 Some of the parents i n d i c a t e d they were r e c i p i e n t s of p a t e r n a l i s t i c a c t i o n s , as d e s c r i b e d by S torch (1982) , i n which h e a l t h care p r o f e s s i o n a l s ac ted fo r the p e r s o n ' s good wi thout c o n s u l t i n g the p e r s o n . One mother was upset by a n u r s e ' s attempt to p r o t e c t her from the exper i ence when her d e s i r e was to be t o t a l l y i n v o l v e d . Mother : So w h i l e [ c h i l d ] was d y i n g , one of the nurses came o v e r , b u s t l e d around my bed and s t a r t e d to take me out and, "Excuse me, what are you do ing? " " W e l l , I was j u s t going to take you out i n the h a l l . " And I s a i d , " O h , no y o u ' r e n o t ! " . . . She was t r y i n g to p r o t e c t me, you know, take me away w h i l e he was d y i n g . That was not what I wanted. The three main aspects i n the i n t e r a c t i o n s wi th h e a l t h care p r o f e s s i o n a l s were i n f o r m a t i o n s h a r i n g , d e c i s i o n making and s e n s i t i v i t y to the p a r e n t s . These areas are not mutua l ly e x c l u s i v e but o v e r l a p i n the p r o v i s i o n of a p p r o p r i a t e h e a l t h c a r e . P r o v i d i n g i n f o r m a t i o n and encourag ing involvement i n d e c i s i o n making must be done i n a s e n s i t i v e , h u m a n i s t i c , empathic manner, v iewing the c l i e n t as an a c t i v e person i n the p r o c e s s . Bereavement support groups are a p o t e n t i a l source of support f o r parents a l though only two couple s d i s c u s s e d t h e i r invo lvement with such groups . The o ther couples e i t h e r d i d not address t h i s source of support or had chosen 57 not to be i n v o l v e d . One couple i n d i c a t e d tha t the bereavement support group they a t tended was s i g n i f i c a n t i n t h e i r under s t and ing t h e i r own g r i e f and tha t of t h e i r spouse . T h i s o c c u r r e d through l i s t e n i n g to o ther s share t h e i r exper i ences and r e a l i z i n g they were not a lone i n f e e l i n g as they d i d . One couple a t tended two groups but d i d not f i n d them h e l p f u l or s u p p o r t i v e . Most of the i n t e r a c t i o n s with h e a l t h care p r o f e s s i o n a l s o c c u r r e d at or near the time of dea th . P a r e n t s ' g r i e f over t h e i r i n f a n t ' s death and t h e i r need f o r support extended f a r beyond the time of dea th . As Kleinman (1978) has n o t e d , much of h e a l t h care occurs w i t h i n the popular s e c t o r of f a m i l y , f r i e n d s and community. I n t e r a c t i o n s wi th F r i e n d s and Fami ly Norbeck (1981) has observed t h a t the m a t u r a t i o n a l c r i s e s of pregnancy and parenthood evoke spontaneous support from f r i e n d s , r e l a t i v e s and even s t r a n g e r s but the support fo r the c r i s i s of death i s much more d i f f i c u l t f o r members of the support network to p r o v i d e . Two areas t h a t were s i g n i f i c a n t i n the i n t e r a c t i o n s with f r i e n d s and f a m i l y f o l l o w i n g the awareness of the death or impending death of t h e i r c h i l d were the a c t u a l response to the parents and the acknowledgement of the c h i l d as a s i g n i f i c a n t p e r s o n . 58 Response of f r i e n d s and f a m i l y to p a r e n t s . The study parents i n d i c a t e d t h a t the response of t h e i r f r i e n d s and f a m i l y was an important pa r t of the exper ience and i n f l u e n c e d how they were able to cope wi th t h e i r g r i e f . They wished f r i e n d s and f a m i l y to r e a l i z e the s i g n i f i c a n c e and immensity of the l o s s , to be aware of the time i t takes to deal with the g r i e f and to be a v a i l a b l e to t a l k wi th them and l i s t e n to them when they f e l t they needed i t . Some of the study parents found t h a t i n i t i a l l y support was r e a d i l y a v a i l a b l e and f r e e l y o f f e r e d . They a l so found t h a t there was a withdrawal of support and an e x p e c t a t i o n t h a t g r i e f should be over sooner than parents were ready . K i r k (1984) has p o i n t e d out t h a t the process of g r i e f takes much l o n g e r than most people r e a l i z e or f a m i l i e s are w i l l i n g to a l l o w . One mother t a l k e d of having support and a t t e n t i o n i n i t i a l l y then of having i t wi thdrawn: Mother : I t ' s l i k e y o u ' r e i n shock the f i r s t two weeks. And tha t f i r s t month, w e l l , i t was a c t u a l l y the f i r s t two or three weeks, we got l o t s of c a r d s , l o t s of phone c a l l s , l o t s of people coming around and b r i n g i n g f lowers and t h i n g s . T h a t ' s always n i c e to have t h a t . And then i t k i n d of stops and y o u ' r e on your own. . . . Everybody has t h e i r own l i v e s to l i v e . 59 The couple who had s u f f e r e d two i n f a n t deaths compared the support r e c e i v e d a f t e r each dea th : F a t h e r : [ F i r s t c h i l d ] was b o r n , and then he d ied i n an hour , and then two or three days l a t e r [ w i f e ] was home from the h o s p i t a l and people tend to t h i n k tha t she ' s home, she ' s f i n e . Whereas wi th [second c h i l d ] there was a twenty day p e r i o d where we were r e a l l y s t r u g g l i n g and s u f f e r i n g o u r s e l v e s . People brought f o o d , our church supported us an awful l o t through prayer and j u s t be ing t h e r e , our f r i d g e was f u l l of f o o d , we d i d n ' t have to cook a n y t h i n g . In a t tempt ing to unders tand her f r i e n d s ' l ack of s u p p o r t , one woman a t t r i b u t e d i t to f e a r : Mother : People are a f r a i d , they d o n ' t know what to say, consequent ly they d o n ' t say a n y t h i n g . T h e i r l i v e s are back toge ther and yours should be t o o . Two couples i n d i c a t e d very l i t t l e support even at the b e g i n n i n g of the e x p e r i e n c e : F a t h e r : I f i n d t h a t even when I t r y to b r i n g up the s u b j e c t , most people change the s u b j e c t . So I gave up t r y i n g to b r i n g i t up. Mother : As f a r as f ami ly and f r i e n d s were c o n c e r n e d , none of them knew what to say , what to do fo r us . They 60 a l l j u s t wanted to hush i t up, d i d n ' t want to t a l k about i t , which you know, from our support group we thought t h a t ' s not what we need, t h a t ' s the o p p o s i t e of what we need. In c o n t r a s t to coup le s who f e l t i s o l a t e d by t h e i r f r i e n d s and f a m i l y , one mother i n d i c a t e d a need to be a lone and saw her f r i e n d s ' r e t i c e n c e to c a l l as an i n d i c a t i o n of t h e i r s e n s i t i v i t y : Mother : I d i d n ' t want to t a l k to p e o p l e , I d i d n ' t want people fo r a w h i l e , I j u s t needed to go through t h i s g r i e f on my own, but I f e l t an enormous amount of s u p p o r t . I knew people were phon ing , I knew my f a m i l y a l l knew and you know, were g r i e v i n g f o r the baby. . . . I knew there was a grea t deal o f , a network of s o r t of empathy, you know, and even i f i t wasn ' t spoken, which i t wasn ' t o f ten and a number of people have s a i d to me s i n c e , "We d i d n ' t know what to s a y , " o r , "We thought maybe you should be l e f t a l o n e , or "We thought you r e a l l y w o u l d n ' t need o u t s i d e r s , " I d i d f ee l the warmth, the s u p p o r t , the empathy. Even though parents were g r i e v i n g and wanted the support of f r i e n d s and f a m i l y , they s t i l l wanted to be t r e a t e d as normal v i b r a n t p e o p l e . The f o l l o w i n g comments by three mothers show t h i s d e s i r e to be seen as normal , the 61 a p p r e c i a t i o n when they were seen as normal , and the f r u s t r a t i o n when they were no t : Mother : In December my parents t r e a t e d me as i f I was d y i n g . I would go v i s i t them and they would j u s t s i t there as i f I was pa s s ing on to my great reward . . . . So r e a l l y i t was l i k e people doted , I mean, they were meaning w e l l , but i t was always an i n t e n s i t y . My s i s t e r was the only one who t r e a t e d us l i k e we were s t i l l normal . Mother : I was very lucky t h a t a f r i e n d of mine who had had her baby and f r i e n d s of mine who were pregnant had enough. . . I t h i n k i t took a l o t on t h e i r par t to i n c l u d e us i n . I t h i n k i t meant a l o t to us t h a t they s t i l l saw us as v i b r a n t human b e i n g s . Mother : The worst t h i n g to do when a c h i l d d ie s i s to not b r i n g the s u b j e c t up. What people r e a l l y need when they l o se a c h i l d i s to s i t down and t a l k . People are h u r t i n g , they d o n ' t know what to say . Our f i r s t comment when our c h i l d d i ed was "I know t h e r e ' s no th ing you can say, but j u s t be with us , s tand by u s . " I had to phone people because they never phoned us and say "Hey, we ' re o k a y . " Parents noted t h a t i n s o c i a l i n t e r a c t i o n s with the f a t h e r , there was o f ten an i m p l i c a t i o n t h a t he was not 62 g r i e v i n g to the same degree as h i s w i f e . M a n d e l l , McAnulty and Reece (1980) found a d e v a l u a t i o n of the f a t h e r ' s r o l e at the time of the death of an i n f a n t and a l ack of awareness of the a f f e c t i o n a l bonds between i n f a n t s and f a t h e r s . H. Lewis (1980) a l so noted tha t mothers are a l lowed more time to g r i e v e than are f a t h e r s and t h a t men are expected to be s t rong and not show t h e i r emot ions . Severa l f a t h e r s t a l k e d of the nega t ion of t h e i r f e e l i n g s by o ther s and then by themse lves , which may have pro longed or c o m p l i c a t e d t h e i r g r i e v i n g p r o c e s s . F a t h e r : People were c a r i n g and c o n c e r n e d , and the comments were always something l i k e , "So how's the baby, you know i t must be r e a l l y tough fo r your w i f e . " I got to the p o i n t where I b e l i e v e d I wasn ' t supposed to be f e e l i n g the way I was f e e l i n g and so I tended to f ee l i t was abnormal so I b u r i e d those f e e l i n g s . . . . Sometimes I f e l t l i k e s a y i n g , " W e l l , what about me?" Another f a t h e r s i m i l a r l y expressed how o t h e r s ' f a i l u r e to acknowledge h i s pa in a f f e c t e d him: F a t h e r : Everybody , from the moment i t happened, kept r e -emphas i z ing the p o i n t tha t [ w i f e ] , how i s [ w i f e ] f e e l i n g , how i s she h a n d l i n g i t ? You 've got to be awfu l ly s t rong to keep [ w i f e ] g o i n g . . . . Because everybody t e l l s you t h a t you c a n ' t p o s s i b l y be f e e l i n g 63 as much as the woman, i t ' s a lmost very hard to f ee l t h a t , or show as much emot ion , so i t k i n d of f o r c e s you to hold back. F i v e of the s i x couple s commented on the r e a c t i o n and support of t h e i r p a r e n t s . Some found t h e i r parents very s u p p o r t i v e and u n d e r s t a n d i n g , o ther s f e l t a withdrawal and an i n a b i l i t y to t a l k about the death of the i n f a n t . M i l e s (1984) has d i s c u s s e d the g r i e f of grandparents which i s f o r the l o s t g r a n d c h i l d as wel l as f o r the pain t h a t t h e i r c h i l d r e n are f e e l i n g at the l o s s of t h e i r c h i l d . Grandparents are a p o t e n t i a l r e source fo r g r i e v i n g parents and may need to have t h e i r g r i e f acknowledged to enable them to be more e f f e c t i v e i n t h e i r s u p p o r t . Two p a r e n t s ' comments f o l l o w : F a t h e r : My f a m i l y i n p a r t i c u l a r d i d n ' t unders tand t h a t g r i e f at a l l , w e l l , I s h o u l d n ' t say, at a l l . I t was l i k e , i t ' s over wi th now, why a r e n ' t you b e t t e r ? They c o u l d n ' t p o s s i b l y , or d i d n ' t somehow understand i t at a l l . I d o n ' t t h i n k there was a grea t d e a l , I s h o u l d n ' t say there wasn ' t a g rea t deal of sympathy, j u s t a rea l l ack of u n d e r s t a n d i n g . F a t h e r : The one t h i n g tha t r e a l l y makes me very sad and s t i l l bothers me t e r r i b l y , even now, i s tha t I d i d n ' t get very much support from my s ide of the 64 f a m i l y . F r i e n d s at work and [ w i f e ' s ] s ide of the f a m i l y were u l t i m a t e l y the best support system t h a t I r e c e i ved . The study parents attempted to unders tand the r e a c t i o n s of t h e i r f r i e n d s and f a m i l y and i n some cases to s h i e l d and p r o t e c t them from the d i s c o m f o r t of the l o s s . E . Lewis (1976) suggests tha t t h i s attempt to p r o t e c t o ther s from the d i s t r e s s may d e p r i v e themselves of the t a l k t h a t u l t i m a t e l y a ids mourning . Mother : Now I r e a l i z e tha t the reason [ f r i e n d s ] d i d n ' t a l low me to t a l k about i t and they s t i l l d o n ' t a l low me to t a l k about i t i s b a s i c a l l y they d o n ' t , they s t i l l d o n ' t know what to say . I t ' s a very hard s i t u a t i o n and I t h i n k they are s t i l l very upse t . Some of the couple s t a l k e d about the e f f e c t s t h a t the exper ience of l o s i n g t h e i r c h i l d and the subsequent i n t e r a c t i o n s with o ther s had on t h e i r f r i e n d s h i p s . Mother : I t ' s hard when people d o n ' t phone. I t ' s very hard to remain c l o s e to them. You should be ab le to share the good t imes and bad t i m e s . Not tha t you want to c ry on t h e i r shou lder c o n s t a n t l y , you d o n ' t , but you have to share your exper i ences wi th them. 65 Another parent t a l k e d of the s t rengthened bond tha t he and h i s wife f e l t with some of t h e i r f r i e n d s a f t e r the c h i l d ' s dea th : F a t h e r : In the one ca se , i f the f r i e n d s h i p was to be d e s c r i b e d as them h e r e , us h e r e , wi th a thread i n between, I t h i n k i t i s now them h e r e , us here wi th a very s t rong cab le i n between. The f r i e n d s h i p has grown to where they would do any th ing f o r us and we would do anyth ing for them. The support from f r i e n d s and f a m i l y was seen by parents in a p o s i t i v e l i g h t i f s e n s i t i v i t y to t h e i r needs was demonstra ted . Another a spect of support was the a t t i t u d e shown toward the deceased c h i l d . Acknowledgement of the c h i l d . As wel l as re sponding s u p p o r t i v e l y to p a r e n t s , f r i e n d s and f a m i l y were expected to acknowledge the c h i l d i n h i s or her own r i g h t . T h i s may be d i f f i c u l t f o r them to do as they have not known the c h i l d and o f ten have not even seen the c h i l d ( S t r ingham, e t . a l . , 1982). L o v e l l (1983) , Clyman, et al . ( 1980) and Helmrath and S t e i n i t z ( 1978) have found tha t the death of an i n f a n t i s o f ten c o n s i d e r e d a "non-event " and the s i g n i f i c a n c e of the c h i l d as a person i s not acknowledged. The parents i n t h i s study had an attachment to the p a r t i c u l a r c h i l d they had l o s t and f e l t the need fo r 66 o ther s to r e c o g n i z e t h i s attachment as wel l as acknowledge the c h i l d . Acknowledging the c h i l d i n c l u d e d a l l o w i n g the parents to g r i e v e fo r t h i s p a r t i c u l a r c h i l d and not d i s c o u n t the g r i e f by f o c u s i n g on present or fu ture c h i l d r e n . One c o u p l e ' s recommendation a r i s i n g from t h e i r exper ience was: Mother : I f we c o u l d t e l l p e o p l e , when people have l o s t a c h i l d , never , ever say to them, wel l so-and-so l o s t a c h i l d and they have f i v e h e a l t h y c h i l d r e n . D o n ' t g ive them the i l l u s i o n t h e y ' r e going to have more k i d s , (a) You d o n ' t know i f they ever want any more k i d s , (b) you d o n ' t know i f they can ever have any more k i d s , and ( c ) , which r e a l l y should be ( a ) , no th ing i n the wor ld ever r e p l a c e s t h a t c h i l d . Other i n a p p r o p r i a t e comments were quoted by the f o l l o w i n g mother : Mother : I ' ve had my f r i e n d s say , "Oh y o u ' r e l u c k y , at l e a s t you have another o n e , " or " Y o u ' r e lucky i t d i d n ' t happen to your o ther c h i l d , " or " Y o u ' r e lucky you d i d n ' t have him l o n g , you d i d n ' t have an a t t a c h m e n t . " The study couples had not had t h e i r c h i l d long but they d i d have a s t rong a t tachment . Because of the shor t l i f e of the baby, they had few t a n g i b l e memories. C a r d s , p i c t u r e s , 67 the funera l s e r v i c e and s p e c i a l b u r i a l s i t e were h e l p f u l i n c r e a t i n g memories of t h e i r c h i l d . Hea l th care p r o f e s s i o n a l s as wel l as f r i e n d s and f a m i l y were sources of support to the couple e x p e r i e n c i n g the l o s s but the source of the most support appeared to be the c o u p l e ' s r e l a t i o n s h i p i t s e l f . T h i s i s not s u r p r i s i n g as they had both had the e x p e c t a t i o n s of having a c h i l d and had both been through the exper i ence of having these e x p e c t a t i o n s s h a t t e r e d . I n t e r a c t i o n s w i t h i n the Couple The s t r e s s of the death of a c h i l d and the subsequent g r i e f t h a t parents go through puts severe pre s sure on the marr iage r e l a t i o n s h i p . T h i s s t r e s s on the marr iage and the p o t e n t i a l f o r marr iage break-up was noted by the coup le s i n the study done by Helmrath and S t e i n i t z (1978) . A s i m i l a r concern was expressed by a f a t h e r i n the c u r r e n t s t u d y . F a t h e r : I cannot remember a time when we had ever had such a low p o i n t i n our l i v e s and i t i s t h a t k i n d of s t r e s s tha t w i l l break people a p a r t . The couple s i n t h i s study however, a l l f e l t t h a t the exper i ence of l o s i n g t h e i r c h i l d had u l t i m a t e l y drawn them c l o s e r . T h i s c l o s e n e s s had o c c u r r e d as a r e s u l t of or i n s p i t e of problems encountered d u r i n g the e x p e r i e n c e . 68 Shared and i n d i v i d u a l g r i e v i n g . Couples t a l k e d of t h i s exper ience as a shared exper ience as wel l as an i n d i v i d u a l e x p e r i e n c e . Al though both were e x p e c t i n g to be parents and both had these hopes s h a t t e r e d , the exper ience was d i f f e r e n t due to the p h y s i o l o g i c a l aspect of the mother c a r r y i n g and b e a r i n g the c h i l d . The f o l l o w i n g mother t a l k e d of her sense of i s o l a t i o n and l o n e l i n e s s and acknowledged her husband's l o n e l i n e s s as wel1 : Mother : I w o u l d n ' t t a l k wi th p e o p l e , "Gee I f e l t some movement," you know, because I knew tha t maybe t h i s was never going to happen, so those k inds of t h i n g s , you know, I shared them with [husband] but I found t h a t even [husband] a f t e r a w h i l e , I d i d n ' t even want to t e l l h im. So I kept a l o t of t h a t to m y s e l f . I t o l d him l a t e r on , but i t was very h a r d . In the middle of the n i g h t , i t ' s k i n d of you and the baby, and you know, i t was l o n e l y at t i m e s , and I t h i n k i t was very l o n e l y fo r [husband] at t i m e s . The same mother conc luded t h a t , "The f a c t i s , you g r i e v e toge ther and you g r i e v e s e p a r a t e l y , and sometimes y o u ' r e up and the o ther person i s down." 69 Problems e n c o u n t e r e d . Because the nature of the exper ience was both shared and i n d i v i d u a l , problems of mi sunder s t and ing between the parents o c c u r r e d at t i m e s . Two problems e v i d e n t i n the study p a r e n t s ' accounts were the d i f f e r e n c e s i n t h e i r emotional response and the d i f f e r e n c e s i n time and d u r a t i o n of t h e i r re sponse . Helmrath and S t e i n i t z (1978) noted t h a t the pace of r e s o l u t i o n of g r i e f was d i f f e r e n t fo r mothers and f a t h e r s l e a d i n g to l ack of communicat ion . Clyman et a l . (1980) a l s o observed t h a t parents expressed t h e i r g r i e f i n d i f f e r e n t ways and at d i f f e r e n t t i m e s . T h i s i s e v i d e n t i n the f o l l o w i n g c o u p l e ' s e x p e r i e n c e : F a t h e r : A f t e r about a month or so I was ready to stop t a l k i n g about the event and j u s t c a r r y on . I tend to i n t e r n a l i z e g r i e f and t h i n g s l i k e t h a t and [ w i f e ] of c o u r s e , her make-up a long those l i n e s i s e x a c t l y o p p o s i t e . She works t h i n g s out by t a l k i n g about i t , which i s a much h e a l t h i e r way of doing i t but i t ' s not the way I do i t . So t h a t c r e a t e d a l o t of f r i c t i o n f o r q u i t e a w h i l e a f t e r t h a t . One f a t h e r f e l t tha t bonding had not o c c u r r e d fo r him as i t had fo r h i s wife and t h e r e f o r e h i s g r i e f was l e s s than tha t of h i s w i f e . 70 F a t h e r : I t h i n k i t was hard fo r [ w i f e ] to unders tand tha t i t d i d n ' t a f f e c t me. In f a c t a lmost a l l of the anguish I e x p e r i e n c e d was fo r [ w i f e ] . Mother : No, I p i c k e d t h a t up at the t i m e , tha t your concern was almost t o t a l l y fo r me, and tha t was a l l r i g h t . I somehow found t h a t okay i n t h a t , i n a way, i t was h e l p f u l . I t was h e l p f u l t h a t there w e r e n ' t two of us e m o t i o n a l l y upse t , you know. . . . I d o n ' t remember r e s e n t i n g i t at a l l f o r the baby ' s sake. The f o l l o w i n g couple saw i n r e t r o s p e c t t h a t the d i f f i c u l t y they had had i n communication was a r e s u l t of t h e i r d i f f e r e n t ways and times of f e e l i n g t h e i r g r i e f . F a t h e r : I c o u l d be q u i t e happy at one moment and [ w i f e ] was r e a l l y upset about something , and I'm g o i n g , " W e l l , what ' s the mat te r ? " I ' d be happy and I ' d say something and [ w i f e ] would j u s t need t h a t l i t t l e p i n p r i c k to b u r s t her and oh , no, there we go a g a i n . Then I ' d t h i n k I ' d be over i t and I ' d be in a hole a g a i n . Not o p e n l y , I d o n ' t th ink I was open about 1 t • • • • Mother : Before going to the support group, I ' d j u s t get upset and we c o u l d n ' t t a l k about i t . 71 Coping with problems . The study couples had come through a d i f f i c u l t time i n t h e i r r e l a t i o n s h i p because they were aware of the p o t e n t i a l problems t h a t a major c r i s i s such as the death of a c h i l d c o u l d produce . T h i s awareness seemed to g ive them the under s t and ing and the p a t i e n c e to work through the di f f i c u l t i e s . Mother : One t h i n g I was say ing to him a f t e r the f i r s t day, we've got to be c a r e f u l , marr iages d ie a f t e r the death of a c h i l d , and we've got to be very c a r e f u l . And t h a t ' s one of the main t h i n g s , i s be ing aware tha t people g r i e v e at d i f f e r e n t t imes and d i f f e r e n t s t age s , and i t d o e s n ' t mean t h a t t h e y ' r e not g r i e v i n g . You have to a l low the o ther person to do i t . And t h a t ' s h a r d , t h a t ' s r e a l l y h a r d . You know, we have a r e a l l y s o l i d m a r r i a g e , b u t . . . One f a t h e r t a l k e d of the need to be supported by the p a r t n e r and the d i f f i c u l t y when the p a r t n e r ' s needs were a l so g r e a t . These parents d e a l t with t h i s by a l l o w i n g time fo r themselves as i n d i v i d u a l s . F a t h e r : Y o u ' r e r e a l l y aware of the need to be c a r e f u l . You r e a l l y need to be c a r e f u l with each o t h e r , i n our r e l a t i o n s h i p , because when you get to t h a t p o i n t , you 72 d o n ' t always have a l o t to g ive and y e t i t ' s a time when you r e a l l y need from the o ther p e r s o n . So when the o ther person i s h u r t i n g and y o u ' r e h u r t i n g and you have noth ing to g i v e , you have to be c a r e f u l t h a t you d o n ' t defend y o u r s e l v e s , you r e a l l y take time when you need i t . Even a day here and a day t h e r e . J u s t to recharge your b a t t e r i e s . The awareness of pre sent and p o t e n t i a l problems l e d these parents to an acceptance and under s t and ing of t h e i r p a r t n e r ' s exper ience and needs as shown i n the f o l l o w i n g q u o t a t i o n : Mother : I th ink t h a t men f ee l t h a t they have to be s t r o n g , and I t h i n k t h a t i t ' s r e a l important t h a t both of y o u , you d o n ' t even have to be s t rong for each o t h e r , and i t takes a l o t to l e a r n t h a t . I mean, you lean on each o t h e r , but one of you does not have to walk through your days t h i n k i n g , I should be the s t rong one. There were t imes when I was s t rong fo r [husband] and t imes when [husband was s t rong fo r me] and t imes when we were both whimpering f o o l s . I t was okay. But I t h i n k the death of a baby e i t h e r draws you toge ther or throws you a p a r t . I d o n ' t t h i n k y o u ' r e ever the same a g a i n . 73 Most of the study couple s had e x p e r i e n c e d t e n s i o n and s t r a i n i n t h e i r marr iage r e l a t i o n s h i p due to t h e i r d i f f e r e n c e s i n e x p r e s s i n g g r i e f and i n t h e i r v a r y i n g needs fo r support at d i f f e r e n t t i m e s . T h e i r awareness of the harmful e f f e c t s such an exper ience c o u l d have on t h e i r r e l a t i o n s h i p helped them endure the d i f f i c u l t t i m e s . In the i n t e r p e r s o n a l exper ience of g r i e f , s o c i a l support was an important component t h a t he lped parents to cope wi th the l o s s of t h e i r i n f a n t and i n f l u e n c e d t h e i r persona l exper i ence s of g r i e f . Schne ider (1981) has g iven p o s s i b l e reasons why an ongoing source of support i s important i n g r i e f . The exper ience of one l o s s c r e a t e s a fear of l o s s of a l l important a t t achments . "The presence of even one r e l i a b l e source of s u p p o r t , whether i t be f a m i l y , r e l i g i o u s f a i t h , m i n i s t e r , nurse or c o u n s e l l o r , which endures can c h a l l e n g e these f e a r s " ( S c h n e i d e r , 1981, p. 37 ) . S u p p o r t i v e r e l a t i o n s h i p s permit the bereaved to share the exper ience of t h e i r l o s s . " F o r growth to occur from l o s s , there needs to be some p u b l i c acknowledgement tha t what happened r e a l l y happened" ( S c h n e i d e r , 1981, p . 38 ) . F i n a l l y , s u p p o r t i v e r e l a t i o n s h i p s a s s i s t the bereaved i n g e t t i n g a p e r s p e c t i v e , of see ing tha t l i f e can go on and of see ing t h a t a l though the l o s s w i l l always be a pa r t of one ' s l i f e , the i n t e n s e g r i e f and pa in w i l l d i m i n i s h with t i m e . 74 The f i n a l s e c t i o n of t h i s chapter dea l s with p a r e n t s ' r e f l e c t i o n s on the exper ience and t h e i r search fo r meaning i n the face of t h i s s h a t t e r i n g l o s s of t h e i r i n f a n t . R e f l e c t i o n s on the E x p e r i e n c e :  Search fo r Meaning The death of t h e i r i n f a n t was not an event from which parents recovered but they l e a r n e d to l i v e with i t and look beyond t h e i r pa in fo r p o s i t i v e t h i n g s i n the e x p e r i e n c e . One woman s t a t e d , "We w o u l d n ' t want [ c h i l d ' s ] death to be i n v a i n . " " G r i e v i n g i s a l i f e l o n g process of l e a r n i n g to manage and n e g o t i a t e i n l i f e w i thout t h i s v i t a l pa r t of o n e s e l f , which cannot be r e p l a c e d " ( A r n o l d and Gemma, 1983, p. 102) . T h i s l i f e l o n g process of g r i e v i n g fo r the c h i l d was e v i d e n t i n some of the couple s d e s c r i p t i o n s of the c l a r i t y of the memories of the c h i l d and the events su r round ing the dea th . F a t h e r : T h i s exper i ence was so i n t e n s e , so much a par t of every second of our l i v e s , t h a t I d o n ' t t h i n k I ' l l ever f o r g e t any p o r t i o n of i t . Severa l parents t a l k e d of the r e c u r r e n c e of the memories and the f e e l i n g s of g r i e f over the c h i l d ' s dea th : 75 F a t h e r : For the r e s t of your l i f e i t ' s s t i l l there i n the back of your mind and i t comes to the sur face every now and t h e n . An e f f o r t to make sense of the death i n c l u d e d a search f o r meaning i n the exper i ence and fo r p o s i t i v e a spects of a nega t ive e x p e r i e n c e . There was ev idence of a r e - e v a l u a t i o n of b e l i e f s and l i f e p h i l o s o p h y . The f o l l o w i n g couple t a l k e d of how the exper ience had changed t h e i r a t t i t u d e s and p r i o r i t i e s : F a t h e r : T h e r e ' s a l s o a change of a t t i t u d e towards your d a i l y a c t i v i t i e s . You s o r t of take the a t t i t u d e t h a t noth ing i s r e a l l y t h a t important anymore. . . Mother : Things take on a d i f f e r e n t p e r s p e c t i v e . And m a t e r i a l t h i n g s , they j u s t d o n ' t mean what they used to and as long as you have each o ther and your support system, who cares about any th ing e l s e . I t ' s always wi th you and i t takes on a d i f f e r e n t p e r s p e c t i v e , but i t ' s always wi th y o u . The f o l l o w i n g parents found t h a t t h e i r f i r s t c h i l d ' s death opened them up to a r e l i g i o u s exper i ence and commitment tha t helped them through the g r i e f of t h e i r second c h i l d ' s dea th : F a t h e r : With [ f i r s t c h i l d ] we h a d n ' t had much thought about r e l i g i o n but as a r e s u l t of h i s dying i t brought 76 us much c l o s e r toge ther and r e a l l y made us s e a r c h . . . we both made a commitment to Jesus and our l i v e s j u s t changed. . . . We made the funera l a statement of hope. I t d o e s n ' t take away a l l the sorrow and pa in here but i t c e r t a i n l y i s a d i f f e r e n t k i n d of pa in and a d i f f e r e n t k i n d of sorrow. C a l l a h a n et al . (1983) have observed p a r e n t s ' i n c r e a s e d s e n s i t i v i t y to o ther s and a b i l i t y to r e l a t e more e m p a t h e t i c a l l y r a t h e r than a v o i d i n g o t h e r s . Most parents t a l k e d of t h e i r i n c r e a s e d s e n s i t i v i t y to o ther s who were s u f f e r i n g and p a r t i c u l a r l y to those who had l o s t a c h i l d . Severa l mothers a l so became i n v o l v e d as community re source p e o p l e , i n p r o v i d i n g bereavement support to o ther p a r e n t s . The a b i l i t y to r e l a t e to o ther bereaved persons was seen as a p o s i t i v e outcome of the e x p e r i e n c e . Mother : I f I hear of a person who has had a f a m i l y member d i e , I can go up to tha t person and t e l l them tha t I'm saddened by what has happened to you and i f t h e r e ' s a n y t h i n g I can do, l e t me know. Which I w o u l d n ' t have done b e f o r e . I would have turned away from them. I c o u l d n ' t have faced them. C a l l a h a n et a l . (1983) a l s o see h e l p i n g o ther s as a s o c i a l l y a c c e p t a b l e way of t r y i n g to deal with one ' s own d i s t r e s s . 77 Parents i n d i c a t e d a broadened a p p r e c i a t i o n and knowledge of l i f e . One woman was c o n v i n c e d t h a t there was no growth apart from s u f f e r i n g . The statements of the f o l l o w i n g two mothers are examples of the p o s i t i v e a t t i t u d e they had toward the d i f f i c u l t exper ience of knowing g r i e f . Mother : I f ee l I ' ve ga ined from the e x p e r i e n c e . In tha t I know what i t f e e l s l i k e now to l o se a baby, and I know what g r i e f f e e l s l i k e . . . . One who has had t h i s exper ience i s going to be able to r e l a t e more to o ther people who go through the e x p e r i e n c e . I t ' s a new, perhaps , under s t and ing of what i t ' s about and how you r e a l l y f e e l . Mother : I t has expanded our knowledge of l i f e and death an awful l o t compared to some p e o p l e . Some people probably are born and grow up and d ie and they never know any s o r t of g r i e v i n g l i k e t h a t . Schne ider (1981) s t a t e d tha t "growth from bereavement i s indeed p o s s i b l e . . . [and] l o s s can be a t r a g i c o p p o r t u n i t y fo r growth" (p . 35) .One woman summarized her f e e l i n g s about the exper i ence i n the f o l l o w i n g way: Mother : I t i s a growing e x p e r i e n c e , but you r e a l l y wish you c o u l d be a l lowed to grow i n o ther ways. I t ' s not something you would v o l u n t e e r f o r , you know. 78 The parents i n t h i s study saw the death of t h e i r i n f a n t s as a major l o s s t h a t had changed t h e i r l i v e s and would always be a pa r t of t h e i r l i v e s . These p a r t i c u l a r coup le s had attempted to make sense of t h e i r l o s s e s by f i n d i n g meaning i n them. T h i s d e s c r i p t i v e a n a l y s i s of s i x c o u p l e s ' exper i ence f o l l o w i n g s t i l l b i r t h or e a r l y i n f a n t death has presented and e l a b o r a t e d on the four themes t h a t arose from the i n t e r v i e w d a t a : (1) a n t i c i p a t i o n of parenthood and the s h a t t e r i n g of hopes with the death or knowledge of impending death of the i n f a n t ; (2) a m u l t i d i m e n s i o n a l persona l g r i e f e x p e r i e n c e ; (3) an i n t e r p e r s o n a l g r i e f exper ience i n f l u e n c e d by the s o c i a l support of h e a l t h care p r o f e s s i o n a l s , of f r i e n d s and f a m i l y and of the spouse; and (4) r e f l e c t i o n and search fo r meaning i n the exper ience of s t i l l b i r t h or e a r l y i n f a n t d e a t h . K l e i n m a n ' s (1978) c u l t u r a l system model , the conceptua l framework fo r t h i s s t u d y , gave d i r e c t i o n to e l i c i t d i r e c t l y from c l i e n t s t h e i r e x p l a n a t o r y models or t h e i r way of v iewing t h e i r e x p e r i e n c e . An i n c r e a s e d under s t and ing of the exper ience as d e s c r i b e d by those who have l i v e d i t p r o v i d e s a ba s i s for more a p p r o p r i a t e care and support to c l i e n t s wi th s i m i l a r e x p e r i e n c e s . 79 The study i s summarized, c o n c l u s i o n s are drawn and i m p l i c a t i o n s for n u r s i n g are made and presented i n the f i n a l c h a p t e r . 80 CHAPTER FIVE 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 fo r Nurs ing Summary B i r t h i s u s u a l l y a time of joy and hope fo r parents but when death occurs c l o s e to the time of b i r t h , parents are faced with a major t r a n s i t i o n or c r i s i s . T h i s c r i s i s may l e a d to personal and f a m i l y problems such as d e p r e s s i o n and m a r i t a l t e n s i o n . The a b i l i t y of parents to handle such a c r i s i s i s i n f l u e n c e d by the s o c i a l support r e c e i v e d . Kleinman (1978) has developed a c u l t u r a l system model to e x p l a i n the i n t e r a c t i o n between d i f f e r e n t s e c t o r s of s o c i e t y i n r e l a t i o n to h e a l t h c a r e . He has i d e n t i f i e d three s o c i a l arenas in which s i c k n e s s i s e x p e r i e n c e d which are the popular s e c t o r , i n c l u d i n g the i n d i v i d u a l , the f a m i l y , and the s o c i a l network; the p r o f e s s i o n a l s e c t o r ; and the f o l k s e c t o r . Each of these s e c t o r s c o n s t r u c t s the r e a l i t y of s i t u a t i o n s i n d i f f e r e n t ways c a l l e d e x p l a n a t o r y models by K le inman . In order to p rov ide a p p r o p r i a t e care and support to c l i e n t s the p r o f e s s i o n a l s e c t o r must understand the exper ience as seen by those who l i v e i t . K l e i n m a n ' s c u l t u r a l system model has been used as a way of c o n c e p t u a l i z i n g the problem of the exper ience of p e r i n a t a l bereavement. T h i s model has g iven d i r e c t i o n to the nurse r e s e a r c h e r , as par t of the p r o f e s s i o n a l s e c t o r , to 81 e l i c i t the exper ience d i r e c t l y from parents who have e x p e r i e n c e d a p e r i n a t a l dea th . The ques t ions t h i s study sought to address were (1) How do couple s p e r c e i v e and i n t e r p r e t t h e i r exper ience f o l l o w i n g s t i l l b i r t h or e a r l y i n f a n t death? and (2) How do couple s view the s o c i a l support they have r e c e i v e d at the time of t h e i r i n f a n t ' s death? By d i s c o v e r i n g how couple s p e r c e i v e d t h e i r bereavement exper i ence and the s o c i a l support r e c e i v e d , nurses are able to ga in a b e t t e r under s t and ing of the exper i ence thereby e n a b l i n g them to p r o v i d e more e f f e c t i v e n u r s i n g care and f o s t e r s o c i a l support fo r bereaved f a m i l i e s . T h i s study used the q u a l i t a t i v e r e sea rch des ign of phenomenology to address the ques t ions r e g a r d i n g p a r e n t s ' exper ience f o l l o w i n g s t i l l b i r t h or e a r l y i n f a n t dea th . Phenomenology, an i n d u c t i v e d e s c r i p t i v e type of r e s e a r c h attempts to " d e s c r i b e human exper i ence as i t i s l i v e d " ( O i l e r , 1981, p. 178) , t h e r e f o r e phenomena are i n v e s t i g a t e d and d e s c r i b e d as they appear to the i n d i v i d u a l . S ix c o u p l e s , who were r e c r u i t e d p r i m a r i l y from bereavement support groups p a r t i c i p a t e d i n t h i s s t u d y . Each couple had e x p e r i e n c e d a s t i l l b i r t h or e a r l y i n f a n t death between four months and four year s p r i o r to the s tudy . Data were c o l l e c t e d from the s u b j e c t s through u n s t r u c t u r e d , a u d i o - t a p e d i n t e r v i e w s , t h a t a l lowed the exper i ences to u n f o l d as they were p e r c e i v e d by the s u b j e c t s . Second 82 i n t e r v i e w s were conducted fo r c l a r i f i c a t i o n and v a l i d a t i o n of the themes tha t emerged. A n a l y s i s of the data was based on G i o r g i ' s ( 1975 , a , b ) s teps i n phenomenological methodology. These e n t a i l r ead ing the t r a n s c r i p t to get a sense of the whole , i d e n t i f y i n g u n i t s of meaning throughout each t r a n s c r i p t , c r e a t i n g c a t e g o r i e s of these meaning u n i t s and d e v e l o p i n g the main themes from the d a t a . The four themes t h a t evo lved from the data p r o v i d e d by the s i x couples were (1) a n t i c i p a t i o n of parenthood and the s h a t t e r i n g of hopes with the death or knowledge of impending death of the i n f a n t ; (2) a m u l t i d i m e n s i o n a l persona l g r i e f e x p e r i e n c e ; (3) an i n t e r p e r s o n a l g r i e f exper i ence i n f l u e n c e d by the s o c i a l support of h e a l t h care p r o f e s s i o n a l s , of f r i e n d s and f a m i l y and of t h e i r spouse; and (4) r e f l e c t i o n and search f o r meaning i n the e x p e r i e n c e . The data i n d i c a t e d t h a t p r i o r to the i n f a n t ' s d e a t h , parents had e m o t i o n a l l y and p h y s i c a l l y prepared for pa renthood . E n s u r i n g a safe passage and b i n d i n g i n to t h i s p a r t i c u l a r c h i l d were a spects of t h i s p r e p a r a t i o n . The high a n t i c i p a t i o n and the s p e c i f i c p r e p a r a t i o n s were brought to an end with the death of the i n f a n t . The s h a t t e r i n g of hopes and dreams p r e c i p i t a t e d a per sona l r e a c t i o n of g r i e f i n the p a r e n t s . T h e i r d e s c r i p t i o n s of g r i e f i n d i c a t e d a complex, v a r y i n g combinat ion of emotions that d i d not appear to f o l l o w a 83 p a r t i c u l a r sequence of stages common to a l l . G r i e f i n c l u d e d f e e l i n g s of shock, numbness, d i s b e l i e f , g u i l t , anger , sadness and p a i n . Shock, numbness and d i s b e l i e f appeared to serve as a p r o t e c t i v e mechanism a g a i n s t the f u l l impact of the l o s s , g i v i n g parents time to accept the l o s s more s i o w l y . G u i l t arose fo r some of the parents as they attempted to make sense of the exper ience with q u e s t i o n s such as " C o u l d we have prevented the death?" and "Why d i d t h i s happen to us?" Some of the parents f e l t anger at the l o s s of t h e i r i n f a n t and at the l a ck of support or the type of support r e c e i v e d at the time of t h e i r bereavement. No anger was d i r e c t e d toward the i n f a n t who had d i e d . Parents exper i enced overwhelming f e e l i n g s of sadness and both p h y s i c a l and emotional p a i n . Yearn ing and s e a r c h i n g behav ior appeared to be attempts to f i l l the v o i d caused by the l o s s of the i n f a n t . The few memories the parents had of the c h i l d were c h e r i s h e d and s h a r e d , to r e i n f o r c e t h a t the c h i l d had been a pa r t of the p a r e n t s ' l i v e s and to g ive v a l i d i t y to t h e i r extreme sadness and p a i n . The persona l exper ience of g r i e f was i n f l u e n c e d by the s o c i a l support r e c e i v e d through i n t e r a c t i o n s wi th o t h e r s . T h i s i n t e r p e r s o n a l exper ience of g r i e f i n v o l v e d h e a l t h care p r o f e s s i o n a l s , f r i e n d s and f a m i l y , and the spouse. 84 In the i n t e r a c t i o n s wi th h e a l t h care p r o f e s s i o n a l s , parents f e l t they needed i n f o r m a t i o n about the c o n d i t i o n of t h e i r i n f a n t s to unders tand and make sense of the s i t u a t i o n , to decrease t h e i r g u i l t and to p lan fo r the f u t u r e . They observed tha t they o f ten had to a g g r e s s i v e l y seek i n f o r m a t i o n , tha t i t was not a u t o m a t i c a l l y g iven to them. Some parents a l so f e l t they needed i n f o r m a t i o n about g r i e f and the g r i e v i n g p r o c e s s . Adequate i n f o r m a t i o n l e d to a p p r o p r i a t e d e c i s i o n making which parents wanted to be i n v o l v e d i n . They saw the d e c i s i o n s r e g a r d i n g t h e i r i n f a n t as t h e i r r i g h t and t h e i r r e spons i b i 1 i t y . Parents t a l k e d of the s e n s i t i v i t y of h e a l t h care p r o f e s s i o n a l s to t h e i r needs , f e e l i n g s and e x p e r i e n c e s . V a l u i n g the i n f a n t s and i n c l u d i n g the f a t h e r were important in i n t e r a c t i o n s . P o s i t i v e c h a r a c t e r i s t i c s of h e a l t h care p r o f e s s i o n a l s were openness , w i l l i n g n e s s to t a l k i n a s u p p o r t i v e , c a r i n g manner, c o n s u l t i n g the parents about t h e i r needs and d e s i r e s and acknowledging the p a r e n t s ' c o n t r i b u t i o n s to the s i t u a t i o n . The f r i e n d s and f a m i l i e s of the couple s were seen as a s i g n i f i c a n t pa r t of the s o c i a l support network. Parents wanted t h e i r f r i e n d s and f a m i l i e s to r e a l i z e the immensity of t h e i r l o s s e s ; to unders tand t h a t the i n f a n t s were s i g n i f i c a n t persons i n t h e i r own r i g h t ; to g ive them time to g r i e v e ; to support them through t a l k i n g and l i s t e n i n g ; and 85 to view them as normal , v i b r a n t p e o p l e . Some of the parents found t h a t support was present i n i t i a l l y but was withdrawn too soon. Some a l so observed tha t f a t h e r s were expected to be s t rong and t h e r e f o r e r e c e i v e d l e s s support than mothers . I n t e r a c t i o n w i t h i n each couple was important as parents r e l i e d on t h e i r p a r t n e r s as a major source of s u p p o r t . As the exper i ence was both a shared exper i ence and an i n d i v i d u a l one, some problems arose i n the d i f f e r e n t t i m i n g and i n t e n s i t y of g r i e f r e a c t i o n s . Another problem was i n both p a r t n e r s ' need f o r a great deal of suppor t . Parents f e l t tha t awareness and under s t and ing of the p o t e n t i a l problems had drawn them c l o s e r t o g e t h e r . As parents r e f l e c t e d on the exper ience and looked f o r meaning, most i n d i c a t e d they had v i v i d memories of t h e i r i n f a n t and of the events sur round ing h i s or her l i f e and dea th . Gains from the exper ience i n c l u d e d a r e - e v a l u a t i o n of t h e i r p h i l o s o p h i e s of l i f e , an i n c r e a s e d s e n s i t i v i t y to o ther s and a broader a p p r e c i a t i o n and knowledge of l i f e . C o n c l u s i o n s Three c o n c l u s i o n s tha t are drawn from t h i s study are 1. S t i l l b i r t h or e a r l y i n f a n t death i s a major l o s s f o r parents t h a t remains a s i g n i f i c a n t pa r t of t h e i r l i f e exper i ence . 86 2. The g r i e f of bereaved parents does not always f o l l o w a p a r t i c u l a r p a t t e r n or sequence but has many dimensions tha t may be exper i enced i n v a r i o u s ways. 3 . The g r i e f exper i ence of parents i s i n f l u e n c e d by the support r e c e i v e d from h e a l t h care p r o f e s s i o n a l s , from f r i e n d s and f a m i l y and from the spouse. E f f e c t i v e support may be i n h i b i t e d by the f a i l u r e to see p e r i n a t a l death as a s i g n i g i c a n t event and by the l a ck of knowledge of how to r e a c t and behave i n the event of a s t i l l b i r t h or e a r l y i n f a n t dea th . The f i n d i n g s and c o n c l u s i o n s from t h i s study have i m p l i c a t i o n s fo r n u r s i n g r e s e a r c h , p r a c t i c e and e d u c a t i o n . I m p l i c a t i o n s fo r Nurs ing I m p l i c a t i o n s for Nurs ing P r a c t i c e T h i s study has i m p l i c a t i o n s fo r n u r s i n g p r a c t i c e i n r e l a t i o n to d i r e c t c l i e n t care and more broad ly as i t seeks to i n f l u e n c e h e a l t h care d e l i v e r y and s o c i e t a l a t t i t u d e s toward d e a t h . Because of the m u l t i d i m e n s i o n a l nature of g r i e f and the e x t e n s i v e v a r i a t i o n of the exper ience and of the e x p r e s s i o n of g r i e f , i t i s e s s e n t i a l tha t h e a l t h care p r o f e s s i o n a l s view g r i e v i n g parents as i n d i v i d u a l s . More p e r s o n a l i z e d s e r v i c e to p e r i n a t a l l y bereaved parents c o u l d r e s u l t from e l i c i t i n g the p a r e n t s ' c o n s t r u c t i o n of the exper ience 87 throughout c o n t a c t with them r a t h e r than making assumptions about t h e i r f e e l i n g s , needs and t h e i r p r o g r e s s i o n through the g r i e v i n g p r o c e s s . P r o v i d i n g adequate i n f o r m a t i o n i n a s e n s i t i v e c a r i n g manner w i l l a s s i s t parents i n under s t and ing and making sense of t h e i r exper ience of s t i l l b i r t h or e a r l y i n f a n t dea th . As g r i e v i n g parents are made aware of a spects of t h e i r c h i l d ' s c o n d i t i o n , of procedures su r round ing the b i r t h and d e a t h , and of the expected course of e v e n t s , they w i l l be more equipped f o r involvement i n d e c i s i o n making r e g a r d i n g t h e i r c h i l d . The p h y s i o l o g i c a l nature of pregnancy and b i r t h leads to a h e a l t h care focus on the mother . In the event of i n f a n t d e a t h , support a l so i s d i r e c t e d p r i m a r i l y toward the mother. There i s a need to view both parents as a c t i v e p a r t i c i p a n t s i n b i r t h and a need to r e a l i z e t h a t bonding occurs between both the mother and the c h i l d and between the f a t h e r and the c h i l d . Support i s t h e r e f o r e a need of both p a r e n t s . Parents showed an attachment to the p a r t i c u l a r c h i l d who had d i e d . Nurses can support parents by acknowledging the l o s s of the i n f a n t as a s i g n i f i c a n t person and a s s i s t i n g parents in procedures tha t w i l l a f f i r m the r e a l i t y of the c h i l d . T h i s study has i m p l i c a t i o n s fo r community h e a l t h n u r s i n g f o l l o w - u p to bereaved f a m i l i e s . Parents 88 s p e c i f i c a l l y suggested t h a t the community h e a l t h nurse v i s i t as soon as p o s s i b l e , make the v i s i t when the f a t h e r can be p r e s e n t , and p rov ide i n f o r m a t i o n about re sources such as l i t e r a t u r e and bereavement support groups . Community h e a l t h nurses can a l so a s s i s t parents to unders tand t h e i r own r e a c t i o n s , t h e i r d i f f e r e n c e s i n g r i e v i n g , the p o s s i b l e e f f e c t s on the immediate f a m i l y and the d i f f i c u l t i e s tha t f r i e n d s and f a m i l y may have i n p r o v i d i n g s u p p o r t . More comprehensive care can be p r o v i d e d to bereaved parents when nurses f u n c t i o n as c l i e n t advoca te s , a s s i s t i n g parents to o b t a i n the i n f o r m a t i o n they need from o ther h e a l t h p r o f e s s i o n a l s and promoting p a r e n t a l involvement i n d e c i s i o n making. Nurses can i n f l u e n c e h e a l t h care d e l i v e r y by promoting adequate communication between h o s p i t a l and community s e r v i c e s , thus ensur ing a p p r o p r i a t e f o l l o w - u p of parents e x p e r i e n c i n g p e r i n a t a l d e a t h . Nurses can work at a s o c i e t a l l e v e l by s e n s i t i z i n g and educa t ing the p u b l i c r e g a r d i n g the exper i ence s of parents f o l l o w i n g p e r i n a t a l d e a t h . One way to i n c r e a s e p u b l i c awareness i s through the popular l i t e r a t u r e . Expanding the focus of care to i n c l u d e r e l a t i v e s and f r i e n d s of the parents would spread i n f o r m a t i o n about the i n t e n s i t y of g r i e f , the l e n g t h of g r i e f and p a r e n t s ' need fo r acknowledgement of the c h i l d as a r e a l i t y , and acceptance of t h e i r g r i e f as i t i s expre s sed . T h i s c o u l d be done through 89 p r o v i d i n g a p p r o p r i a t e l i t e r a t u r e fo r those s u p p o r t i n g bereaved f a m i l i e s . I m p l i c a t i o n s for Nurs ing Research T h i s study has focused on the exper i ence of the p a r e n t s , those most d i r e c t l y a f f e c t e d by p e r i n a t a l dea th . As s o c i a l support i s a s i g n i f i c a n t f a c t o r in the p a r e n t s ' e x p e r i e n c e , f u r t h e r r e sea rch on groups p r o v i d i n g s o c i a l support would be a p p r o p r i a t e . Nurs ing i s one such group; the c l o s e f a m i l y and f r i e n d s c o n s t i t u t e another support group tha t c o u l d be i n v e s t i g a t e d to f u r t h e r unders tand and expand the support network of bereaved p a r e n t s . One area of r e s e a r c h c o u l d be nur se s ' p e r c e p t i o n s of p e r i n a t a l death and the f a c t o r s , such as the g e s t a t i o n a l or i n f a n t age and the c o n d i t i o n of the i n f a n t , t h a t may i n f l u e n c e nur se s ' views and hence t h e i r responses to p e r i n a t a l dea th . The response to p e r i n a t a l death c o u l d be assessed i n terms of nur se s ' p e r c e i v e d r o l e s and the ac tua l i n t e r a c t i o n s i n p r o v i d i n g support to parents f o l l o w i n g p e r i n a t a l d e a t h . The q u e s t i o n of how nurses deal wi th t h e i r own g r i e f at the death of an i n f a n t i n t h e i r area of work i s a l so an area fo r f u r t h e r i n v e s t i g a t i o n . Research p e r t a i n i n g to the r o l e of f a m i l y and c l o s e f r i e n d s i n the support system c o u l d address t h e i r p e r c e p t i o n s of s t i l l b i r t h or e a r l y i n f a n t death and look at 90 the q u e s t i o n s , f e a r s , concerns and d i f f i c u l t i e s they have i n r e l a t i n g to bereaved p a r e n t s . I m p l i c a t i o n s for Nurs ing Educa t ion In educa t ing nurses about the g r i e v i n g e x p e r i e n c e , i t i s e s s e n t i a l t h a t t h e o r i e s of g r i e v i n g and stages and phases tha t have been i d e n t i f i e d be viewed i n the l i g h t of the i n d i v i d u a l exper ience of the bereaved p e r s o n . Nurs ing educa t ion c o u l d encourage a c l a r i f i c a t i o n of s t u d e n t s ' own va lues and a t t i t u d e s toward the beg inn ing of l i f e , i n f a n t dea th , the bereaved and an e x p l o r a t i o n of how these va lues i n f l u e n c e n u r s i n g care to bereaved f a m i l i e s . T h i s study has i n d i c a t e d the importance of s e n s i t i v e , humani s t i c i n t e r a c t i o n s between h e a l t h care p r o f e s s i o n a l s and c l i e n t s . As technology i s i n c r e a s i n g , n u r s i n g educa t ion must ensure t h a t the t e a c h i n g and l e a r n i n g of t e c h n o l o g i c a l s k i l l s does not r e p l a c e the i n t e r p e r s o n a l s k i l l s tha t are c r i t i c a l to n u r s i n g . In c o n c l u s i o n , t h i s study has attempted to d i s c o v e r and d e s c r i b e the exper ience of parents who have had a s t i l l b i r t h or an e a r l y i n f a n t dea th . 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New York : Macmi l l an Company. L e a v i t t , M. B. (1982) . F a m i l i e s at r i s k : Pr imary p r e v e n t i o n i n n u r s i n g p r a c t i c e . Bos ton : L i t t l e , Brown & Co. L e w i s , E . (1976) . The management of s t i l l b i r t h : Coping with an u n r e a l i t y . The L a n c e t , 2, 619-620. L e w i s , H. (1980) . E f f e c t s and i m p l i c a t i o n s of a s t i l l b i r t h or o ther p e r i n a t a l d e a t h . In B. L . Blum ( E d . ) , P s y c h o l o g i c a l a spects of pregnancy , b i r t h i n g and  b o n d i n g , (pp. 308-323) . New York : Human Sc iences P r e s s . L e w i s , H . , and L i s t o n , J . (1981) . S t i l l b i r t h : Reac t ion and e f f e c t . In P. F . Pegg & E . Metze ( E d s . ) , Death and  d y i n g : A q u a l i t y of l i f e , (pp. 147-156) . London: Pitman P r e s s . Lindemann, E . (1944) . Symptomatology and management of acute g r i e f . American Journa l of P s y c h i a t r y , 101, 141-148. 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New York : Plenum P u b l i s h i n g C o r p o r a t i o n . Murphy, S. A . (1983) . T h e o r e t i c a l p e r s p e c t i v e s on bereavement. In P. L . Chin ( E d . ) , Advances i n n u r s i n g  theory development . R o c k v i l l e , M a r y l a n d : Aspen P u b l i c a t i o n . Murray , R. B . , L u e t j e , V . & Z e n t n e r , J . P. (1985) . C r i s i s i n t e r v e n t i o n : A therapy t e c h n i q u e . In R. B. Murray & J . P. Zentner ( E d s . ) , Nurs ing concepts fo r h e a l t h  p r o m o t i o n . Englewood C l i f f s , N . J . : P r e n t i c e - H a l l . Norbeck, J . S. (1981) . S o c i a l suppor t : A model f o r c l i n i c a l r e search and a p p l i c a t i o n . Advances i n Nurs ing  S c i e n c e , 3(4) , 43-59 . 97 O i l e r , C . (1982) . The phenomenological approach in n u r s i n g r e s e a r c h . Nurs ing Research , 31, 178-181. Ornery, A . (1983) . Phenomenology: A method fo r n u r s i n g r e s e a r c h . Advances i n Nurs ing S c i e n c e , 5_(2), 49-63 . Peppers , L . G. & Knapp, R. J . (1980) . Maternal r e a c t i o n s to i n v o l u n t a r y f e t a l / i n f a n t dea th . P sychi a t r y , 43, 155-159. Q u i r k , T . R. (1979) . C r i s i s t h e o r y , g r i e f t h e o r y , and r e l a t e d p s y c h o s o c i a l f a c t o r s : The framework fo r i n t e r v e n t i o n . J o u r n a l of N u r s e - M i d w i f e r y , 24, 13-21. R u b i n , R. (1975) . Maternal ta sks i n pregnancy. Maternal  C h i l d N u r s i n g , 4, 143-153. Saunders , C. M. (1980) . A comparison of a d u l t bereavement i n the death of a spouse, c h i l d and p a r e n t . Omega:  J o u r n a l of Death and D y i n g , JJD, 4, 303-322. S c h l o s s b e r g , N. K. (1981) . A model f o r a n a l y z i n g human a d a p t a t i o n to t r a n s i t i o n . The C o u n s e l i n g P s y c h o l o g i s t , 9 ( 2 ) , 2-18. S c h n e i d e r , J . (1981) . Growth from bereavement. In P. F . Pegg & E . Metze ( E d s . ) , Death and d y i n g : A q u a l i t y of l i f e , (pp. 35-57) . London: Pitman P r e s s . Schwartz , H. & J acobs , J . (1979) . Q u a l i t a t i v e s o c i o l o g y : A method to the madness. New Y o r k : The Free P r e s s . Smoyak, S. (1982) . Women and f a m i l i e s . In L . J . Sons tega rd , K. Kowalski & B. J ennings ( E d s . ) , Women's 98 h e a l t h Volume 1: Ambularory C a r e , (pp. 17-27) . New York : Grune & S t r a t t o n . S t a t i s t i c s Canada, (1983) . B i r t h s and deaths : V i t a l s t a t i s t i c s , V o l . 1. S t r ingham, J . G . , R i l e y , J . H . , & Ross , A . (1982) . S i l e n t b i r t h : Mourning a s t i l l b o r n baby. S o c i a l Work, J u l y , 1982, 322-327. S t o r c h , J . (1982) . P a t i e n t s ' r i g h t s : E t h i c a l and l e g a l  i s sue s i n h e a l t h care and n u r s i n g . T o r o n t o : McGraw-Hi l l Ryer son . W o l f f , J . R . , N i e l s o n , P. E . , & S c h i l l e r , P. (1970) . The emotional r e a c t i o n to a s t i l l b i r t h . American J o u r n a l  of O b s t e t r i c s and Gyneco logy , 108, 73-77. W r i g h t , L . M. & B e l l , J . M. (1981) . Nurse s , f a m i l i e s and i l l n e s s : A new c o m b i n a t i o n . In D. Freedman & B. Tru te ( E d s . ) , F a m i l i e s with s p e c i a l needs (pp. 199-205) . Ottawa: A l b e r t a and Canadian A s s o c i a t i o n of S o c i a l Workers . 99 Appendix A P a r t i c i p a n t In format ion L e t t e r School of Nurs ing U n i v e r s i t y of B r i t i s h Columbia Vancouver , B. C . Dear P a r e n t s , My name i s J a n i c e T h i e s s e n . I am p r e s e n t l y doing graduate s t u d i e s i n n u r s i n g at the U n i v e r s i t y of B r i t i s h C o l u m b i a . For my m a s t e r ' s t h e s i s I am i n t e r e s t e d i n s t u d y i n g the exper i ence of parents f o l l o w i n g the s t i l l b i r t h of t h e i r c h i l d or the death of t h e i r c h i l d i n the f i r s t week of l i f e . My past exper ience has mainly been i n community h e a l t h n u r s i n g i n which i t was usual to v i s i t parents f o l l o w i n g the b i r t h of a c h i l d . I f the c h i l d had d i e d , the p o s t n a t a l v i s i t became a more d i f f i c u l t one. I had many ques t ions about the p a r t i c u l a r concerns and needs of the p a r e n t s . In order to p rov ide a p p r o p r i a t e care to f a m i l i e s , h e a l t h p r o f e s s i o n a l s have to f i n d out from parents what t h e i r needs a r e . I b e l i e v e t h a t the people who are best able to t a l k about an e x p e r i e n c e , p a r t i c u l a r l y the emotional a spects of the exper ience are those who have a c t u a l l y been through i t . I t h e r e f o r e hope to i n t e r v i e w parents who have s u f f e r e d the death of t h e i r c h i l d d u r i n g the time before or a f t e r b i r t h to ga in a b e t t e r under s t and ing of the exper ience from t h e i r p e r s p e c t i v e . I w i l l i n t e r v i e w parents who have e x p e r i e n c e d the l o s s at l e a s t s i x months ago. Such a study w i l l c o n t r i b u t e to more s e n s i t i v e , under s t and ing and s u p p o r t i v e care a v a i l a b l e to p a r e n t s . I f you are i n t e r e s t e d and agree to p a r t i c i p a t e , the study w i l l i n c l u d e (1) my v i s i t i n g you i n your home two or three t imes to i n t e r v i e w you about your e x p e r i e n c e , and (2) tape r e c o r d i n g our c o n v e r s a t i o n which may l a s t about one and one h a l f hours per i n t e r v i e w . Your name and any i d e n t i f y i n g i n f o r m a t i o n w i l l not be used i n the study or r e v e a l e d i n any p r i n t i n g or p u b l i c a t i o n of f i n d i n g s . 101 P a r e n t s ' Reply We are i n t e r e s t e d i n the study d e s c r i b e d i n J a n i c e T h i e s s e n ' s l e t t e r and g ive pe rmi s s ion fo r her to c o n t a c t us to d i s c u s s the study f u r t h e r . Our r e p l y does not i n d i c a t e t h a t we have dec ided to p a r t i c i p a t e i n the s tudy . T h i s d e c i s i o n w i l l be made a f t e r f u r t h e r d i s c u s s i o n with J a n i c e T h i e s s e n . Name: A d d r e s s : Phone Number: Si gna ture : 102 Appendix B P a r t i c i p a n t Consent Form A Phenomenological Study of P a r e n t s ' Exper ience f o l l o w i n g P e r i n a t a l Death I unders tand t h a t the purpose of t h i s study i s to f i n d out what our exper i ence as a couple was l i k e f o l l o w i n g the s t i l l b i r t h or e a r l y i n f a n t death of our c h i l d . I understand tha t t h i s study w i l l i n v o l v e the fo l1owi ng: 1. The i n t e r v i e w e r w i l l v i s i t us i n our home two or three t i m e s . 2. Each i n t e r v i e w w i l l be about one and one h a l f hours in l e n g t h and w i l l be tape r e c o r d e d . I understand t h a t my name and any i d e n t i f y i n g i n f o r m a t i o n w i l l not be used i n the study or r e v e a l e d . C o n f i d e n t i a l i t y w i l l be ensured by the i n t e r v i e w e r us ing a code to i d e n t i f y t r a n s c r i p t s of the recorded m a t e r i a l , wi th the code known only to h e r . I UNDERSTAND THAT I AM UNDER NO OBLIGATION TO PARTICIPATE IN THIS STUDY AND THAT REFUSAL TO PARTICIPATE WILL NOT AFFECT FUTURE MEDICAL OR NURSING CARE. I UNDERSTAND THAT IF I PARTICIPATE, I CAN WITHDRAW AT ANY TIME OR REFUSE TO ANSWWER ANY QUESTIONS WITH NO EFFECT ON MY FUTURE MEDICAL OR NURSING CARE. I unders tand t h a t i f I have f u r t h e r ques t ions I can c o n t a c t the nurse r e s e a r c h e r . I understand the nature of t h i s study and g ive my consent to p a r t i c i p a t e . I acknowledge r e c e i p t of a copy of t h i s consent form. Date : Si gna ture : 

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