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Wives' perceptions of social support while caring for husbands with multiple sclerosis Stovel, Toni Clare 1988

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WIVES' PERCEPTIONS OF SOCIAL SUPPORT WHILE CARING FOR HUSBANDS WITH MULTIPLE SCLEROSIS By TONI CLARE STOVEL B.Sc.N., The U n i v e r s i t y of V i c t o r i a , 1981 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING i n THE FACULTY OF GRADUATE STUDIES (The School of Nursing) We accept t h i s t h e s i s as conforming to the r e q u i r e d standard THE UNIVERSITY OF BRITISH COLUMBIA September 1988 © Toni C l a r e S t o v e l , 1988 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department The University of British Columbia 1956 Main Mall Vancouver, Canada V6T 1Y3 Date / Q f j j Yl^M® DE-6(3/81) ABSTRACT WIVES' PERCEPTIONS OF SOCIAL SUPPORT WHILE CARING FOR HUSBANDS WITH MULTIPLE SCLEROSIS T h i s study was designed to g a i n an understanding of wives' p e r c e p t i o n s of s o c i a l support while l i v i n g with and c a r i n g f o r husbands who have m u l t i p l e s c l e r o s i s . In order to understand the experience from the p e r s p e c t i v e of the p a r t i c i p a n t s the q u a l i t a t i v e method of phenomenology was chosen. Data c o l l e c t i o n and data a n a l y s i s occurred c o n c u r r e n t l y . Data were c o l l e c t e d through u n s t r u c t u r e d i n t e r v i e w s with each of the e i g h t wives who p a r t i c i p a t e d . Each t r a n s c r i b e d i n t e r v i e w was analyzed s e p a r a t e l y and i n r e l a t i o n to the other i n t e r v i e w s . Emerging themes were v a l i d a t e d and c l a r i f i e d by the p a r t i c i p a n t s i n the second i n t e r v i e w . E v e n t u a l l y an o r g a n i z i n g framework emerged t h a t r e v e a l e d two c e n t r a l themes common to the wives' p e r c e p t i o n s of s o c i a l support. The f i r s t c e n t r a l theme d e s c r i b e s the wives c a r e g i v i n g experience which was the context f o r understanding the wives' p e r c e p t i o n s of s o c i a l support. Within t h i s c e n t r a l theme three sub-themes are e x p l o r e d : the commitment of these wives i n p r o v i d i n g care to t h e i r husbands, t h e i r d e s i r e to have some d i s t a n c e from c a r e g i v i n g , and ambivalence a r i s i n g from the simultaneous and c o n f l i c t i n g d e s i r e s to provide care and to d i s t a n c e from c a r e g i v i n g . The second c e n t r a l theme d e s c r i b e s the nature of support as p e r c e i v e d by the wives. This theme b u i l d s upon the f i r s t theme and d i s c u s s e s three sub-themes: support f o r c a r e g i v i n g , support fo r d i s t a n c i n g , and support fo r ambivalence. Support f o r c a r e g i v i n g d i s c u s s e s i n f o r m a t i o n , p r a c t i c a l a s s i s t a n c e , acknowledgement, and f i n a n c e s . Support f o r d i s t a n c i n g d i s c u s s e s s o c i a l a c t i v i t i e s , p r o f e s s i o n a l s e r v i c e s , and a n t i c i p a t o r y support. Support f o r ambivalence d i s c u s s e s the d e s i r e these wives have to be understood. These f i n d i n g s are d i s c u s s e d i n r e l a t i o n to the s o c i a l i z a t i o n of women i n t o e x p r e s s i v e and c a r i n g r o l e s . Furthermore, the reasons why these wives had d i f f i c u l t y i n a c c e p t i n g support are e x p l o r e d . The i m p l i c a t i o n s f o r n u r s i n g p r a c t i c e , e d u c a t i o n , and r e s e a r c h are d e l i n e a t e d i n l i g h t of these f i n d i n g s . i v T A B L E OF CONTENTS Page ABSTRACT i i TABLE OF CONTENTS i v LIST OF FIGURES v i ACKNOWLEDGEMENTS v i i CHAPTER 1: INTRODUCTION TO THE STUDY 1 I n t r o d u c t i o n 1 Background to the Problem 2 Problem Statement 8 Purpose of the Study 9 D e f i n i t i o n of Terms 9 Assumptions 10 L i m i t a t i o n s 10 Summary . . 10 CHAPTER 2: SELECTED LITERATURE REVIEW 12 I n t r o d u c t i o n 12 T h e o r e t i c a l C o n c e p t u a l i z a t i o n s of S o c i a l Support 13 S o c i a l Support and C a r e g i v e r s 19 Informal S o c i a l Support A v a i l a b l e to C a r e g i v e r s 19 Formal S o c i a l Support A v a i l a b l e to C a r e g i v e r s 27 S o c i a l Support and the Health of C a r e g i v e r s 32 Summary 34 CHAPTER 3: METHODOLOGY 36 I n t r o d u c t i o n 36 Phenomenological P e r s p e c t i v e 36 S e l e c t i o n of P a r t i c i p a n t s 38 C r i t e r i a f o r S e l e c t i o n 38 S e l e c t i o n Procedure 38 C h a r a c t e r i s t i c s of P a r t i c i p a n t s 40 Data C o l l e c t i o n 41 Data A n a l y s i s 43 E t h i c a l C o n s i d e r a t i o n s 44 Summary 46 CHAPTER 4: WIVES' ACCOUNTS 47 I n t r o d u c t i o n 47 The Wives' C a r e g i v i n g Experience 48 Committing to C a r e g i v i n g 48 D i s t a n c i n g from C a r e g i v i n g 58 L i v i n g with Ambivalence 62 The Nature of Support 67 Support f o r C a r e g i v i n g 68 A. Information as Support . . . 68 B. P r a c t i c a l A s s i s t a n c e as Support 73 C. Acknowledgement as Support 79 D. Finances as Support 83 Support f o r D i s t a n c i n g 88 A. S o c i a l A c t i v i t i e s as Support 88 B. P r o f e s s i o n a l S e r v i c e s as Support 93 C. A n t i c i p a t o r y Support 95 Support f o r Ambivalence 98 A. Being Understood as Support 99 Summary . 102 CHAPTER 5: DISCUSSION OF FINDINGS 104 I n t r o d u c t i o n 104 The S o c i a l i z a t i o n of Women Into C a r e g i v i n g 104 Issues Around Requesting and Re c e i v i n g Support I l l Summary 120 CHAPTER 6: SUMMARY, CONCLUSIONS, AND IMPLICATIONS FOR NURSING 121 Summary 121 Conclusions 124 Im p l i c a t i o n s f o r Nursing 125 Im p l i c a t i o n s f o r Nursing P r a c t i c e 126 Im p l i c a t i o n s f o r Nursing Education 129 Im p l i c a t i o n s f o r Nursing Research 130 REFERENCES 133 APPENDICES 139 Appendix A: L e t t e r of Information 140 Appendix B: Interview Guide 142 Appendix C: Consent Form 143 V I LIST OF FIGURES F i g u r e Page 1 . Wives' P e r c e p t i o n s of S o c i a l Support While C a r i n g f o r Husbands With M u l t i p l e S c l e r o s i s .... 49 ACKNOWLEDGEMENTS I wish to extend a s p e c i a l thanks to the members of my t h e s i s committee, P r o f e s s o r s C l a r i s s a Green ( c h a i r ) and Helen E l f e r t . T h e i r knowledge, guidance, enthusiasm, and humour have been a constant source of support throughout t h i s p r o j e c t . I am a l s o indebted to the wives who so w i l l i n g l y shared t h e i r experiences with me. In a d d i t i o n , I would l i k e to thank the s t a f f of the M u l t i p l S c l e r o s i s S o c i e t y f o r t h e i r a s s i s t a n c e and encouragement A p p r e c i a t i o n i s extended to Judy Lynam, f o r her e f f o r t s and comments as e x t e r n a l reader. F i n a l l y , I express my g r a t i t u d e to classmates and c l o s e f r i e n d s who shared i n the myriad of experiences d u r i n g these past two years, and laughed a p p r o p r i a t e l y . 1 CHAPTER 1 INTRODUCTION TO THE STUDY I n t r o d u c t i o n M u l t i p l e s c l e r o s i s i s u s u a l l y a p r o g r e s s i v e l y d i s a b l i n g c h r o n i c i l l n e s s i n which people r e q u i r e a s s i s t a n c e with d a i l y a c t i v i t i e s . Due to the s o c i a l and economic b e n e f i t s of keeping people i n t h e i r homes t h i s a s s i s t a n c e i s o f t e n provided by f a m i l y members. Within the f a m i l y , those most l i k e l y to assume the r o l e of c a r e g i v e r are women (Brody, 1895; Shanas, 1979a; 1979b) and i t i s female spouses who experience the g r e a t e s t degree of burden as c a r e g i v e r s (Cantor, 1983). C a r e g i v i n g i s a s s o c i a t e d with p h y s i c a l and psycho-s o c i a l symptoms of s t r e s s , a n x i e t y , and burnout (Ekberg, 1986; Isaacs, 1971; Lindgren, 1985). As w e l l , c a r e g i v i n g i s a s s o c i a t e d with r o l e c o n f l i c t and r o l e f a t i g u e due to competing f a m i l i a l and o c c u p a t i o n a l demands ( G o l d s t e i n , Regnery and W e l l i n , 1981). T h i s i s p a r t i c u l a r l y true of m i d - l i f e wives such as seen i n f a m i l i e s with m u l t i p l e s c l e r o s i s . Although c a r e g i v i n g can be a s t r e s s f u l s i t u a t i o n , r e s e a r c h shows that the burden of c a r e g i v i n g can be modi f i e d by a v a i l a b l e s o c i a l support such as f a m i l y v i s i t s , or p r a c t i c a l a s s i s t a n c e from f a m i l y , f r i e n d s , and 2 h e a l t h p r o f e s s i o n a l s ( Z a r i t and Z a r i t , 1982). However, It i s not c l e a r t h a t a l l sources and types of support are equal. As w e l l , the need f o r , and b e n e f i t s of support l i e p r i m a r i l y i n the s u b j e c t i v e p e r c e p t i o n of the c a r e g i v e r . Even so, there i s l i m i t e d r e s e a r c h a v a i l a b l e t hat e x p l o r e s the q u a l i t a t i v e aspects of s o c i a l support. I t i s t h e r e f o r e c r i t i c a l t h a t h e a l t h care p r o v i d e r s g a i n an understanding of s o c i a l support from the p e r s p e c t i v e of c a r e p r o v i d e r s . The c h r o n i c nature of m u l t i p l e s c l e r o s i s , the number of women who provide f a m i l y care, the apparent burden of c a r e g i v i n g , and the s u b j e c t i v e nature of s o c i a l support r e f l e c t the importance of e x p l o r i n g s o c i a l support from the p e r s p e c t i v e of wives who provide care to husbands with m u l t i p l e s c l e r o s i s . I t i s only through t h i s understanding that nurses w i l l be able to o f f e r these c a r e g i v e r s support i n a meaningful way. Background To The Problem Over the past t h i r t y years Canadian h e a l t h surveys have shown a dramatic r i s e i n c h r o n i c i l l n e s s (Peron and Strohmenger, 1985). In order to respond e f f e c t i v e l y to t h i s t r e n d , h e a l t h p r o f e s s i o n a l s , such as nurses, must become aware of the m u l t i p l e problems faced by i n d i v i d u a l s and f a m i l i e s l i v i n g with c h r o n i c i l l n e s s e s . The most demanding problems i n c l u d e : managing regimens, 3 c o n t r o l l i n g symptoms, time management, pr e v e n t i n g s o c i a l i s o l a t i o n , a d j u s t i n g t o changes i n dis e a s e t r a j e c t o r y , and n o r m a l i z i n g l i f e ( S t r a u s s , 1979). Strauss a l s o p o i n t s out t h a t i n handling these problems, f a m i l i e s develop b a s i c s t r a t e g i e s t h a t r e q u i r e f i n a n c i a l , f a m i l i a l , and p r o f e s s i o n a l r e s o u r c e s , as w e l l as i n t e r a c t i o n a l and s o c i a l s k i l l s i n order to m o b i l i z e those r e s o u r c e s . T h e r e f o r e , the resources a v a i l a b l e to the f a m i l y , such as formal and in f o r m a l support, become c r u c i a l to the management of day-to-day l i v i n g when coping with a c h r o n i c i l l n e s s . One c h r o n i c i l l n e s s t h a t r e q u i r e s resource management by both the i n d i v i d u a l and f a m i l y members i s m u l t i p l e s c l e r o s i s . M u l t i p l e s c l e r o s i s i s a d i s a b l i n g d i s e a s e of the c e n t r a l nervous system. Onset occurs p r i m a r i l y between the ages of 20 to 40 and women are 40% more l i k e l y to be a f f e c t e d than men ( R u s s e l l , 1985). The prevalence r a t e i n Canada ranges from 21.2 to 111 per 100,000 while the r a t e i n B r i t i s h Columbia i s 93.3 per 100,000 (Sweeney, Sadovnick and Brandejs, 1986). The symptomology of m u l t i p l e s c l e r o s i s i s v a r i e d . Some i n d i v i d u a l s experience l i t t l e or no symptom p r o g r e s s i o n from the time of onset. The m a j o r i t y , however, experience e i t h e r continuous p r o g r e s s i v e d e t e r i o r a t i o n , or p e r i o d s of remittance and r e l a p s e with p r o g r e s s i v e d e t e r i o r a t i o n . The symptoms of m u l t i p l e 4 s c l e r o s i s may occur s i n g l y or in combination. Most commonly, symptoms i n c l u d e problems i n v i s i o n , speech, c o o r d i n a t i o n , s e n s a t i o n , use of e x t r e m i t i e s , and bowel and bladder c o n t r o l (Matson and Brooks, 1977). Other symptoms in c l u d e conceptual impairment and l o s s of memory f o r r e c e n t events ( S u r r i d g e , 1969), extreme f a t i g u e ( K r a f t , F r e a l and C o r y e l l , 1986), emotional euphoria and de p r e s s i o n ( S u r r i d g e , 1969; Whitlock and S i s k i n d , 1980). Due to the d i s a b l i n g and long term e f f e c t s of the d i s e a s e , i t i s understandable t h a t f a m i l i e s are g r e a t l y a f f e c t e d by the problems the dis e a s e imposes. At a time when f a m i l i e s are r a i s i n g c h i l d r e n , p l a n n i n g c a r e e r s and o f t e n c a r r y i n g heavy f i n a n c i a l r e s p o n s i b i l i t i e s the onset of a d i s a b l i n g d i s e a s e such as m u l t i p l e s c l e r o s i s can be d e v a s t a t i n g . In recent years there has been a growing i n t e r e s t i n st u d y i n g the c a r e g i v i n g r o l e of f a m i l y members. This has come about f o r s e v e r a l reasons. F i r s t , f a m i l y c a r e g i v e r s have been a long n e g l e c t e d and i n v i s i b l e group, even though f a m i l y provided care i s a long e s t a b l i s h e d p a t t e r n (Soldo and Myllyluoma, 1983). Second, there are s o c i a l b e n e f i t s i n m a i n t a i n i n g the f a m i l y u n i t and t h i r d , i t i s ec o n o m i c a l l y b e n e f i c i a l to s o c i e t y to maintain the c h r o n i c a l l y i l l o u t s i d e of f o r m a l l y e s t a b l i s h e d i n s t i t u t i o n s . F i n a l l y , with the r i s e i n c h r o n i c i l l n e s s and s h i f t s toward community based f a m i l y - p r o v i d e d care i t i s expected that more and more people w i l l spend a pa r t of t h e i r l i v e s as c a r e g i v e r s ( C u t l e r , 1985). In f a c t , Brody (1985) suggests t h a t the c a r e g i v e r r o l e ( p a r t i c u l a r l y parent care) i s becoming so common th a t i t be c o n s i d e r e d a normal and p r e d i c t a b l e l i f e course experience. In response to the rec e n t i n t e r e s t i n the f a m i l y c a r e g i v i n g r o l e r e s e a r c h e r s have begun to study f a m i l y -provided home care. A number of s t u d i e s i n d i c a t e t h a t f a m i l i e s are t y p i c a l l y "the f i r s t l i n e of defence a g a i n s t i n s t i t u t i o n a l i z a t i o n " (Soldo and Myllyluoma, 1983) and w i l l i n g l y provide care u n t i l the burden i s p e r c e i v e d to be too great (Chenoweth and Spencer, 1986; C o l e r i c k and George, 1986; Soldo and Myllyluoma, 1983). In a study by Isaacs (1971), o n e - t h i r d of the p a t i e n t s were placed i n a g e r i a t r i c i n s t i t u t i o n p r i m a r i l y to r e l i e v e s t r a i n on f a m i l y members: " s t r a i n of such s e v e r i t y as to c o n s t i t u t e a t h r e a t to e i t h e r the p h y s i c a l or mental h e a l t h of r e l a t i v e s " (p.284). The l i t e r a t u r e shows t h a t the s t r a i n of c a r e g i v i n g i s m u l t i d i m e n s i o n a l . C a r e g i v i n g i s a s s o c i a t e d with p h y s i c a l and p s y c h o l o g i c a l symptoms of burnout, d e p r e s s i o n and l o n e l i n e s s (Ekberg, 1986), low l e v e l s of l i f e s a t i s f a c t i o n (Fengler and Goodrich, (1979), and s o c i a l i s o l a t i o n and f i n a n c i a l concerns (Chenoweth and Spencer, 1986). In a d d i t i o n , when c a r e g i v e r s are compared to a v a i l a b l e norms they score s u b s t a n t i a l l y lower In s o c i a l p a r t i c i p a t i o n , a f f e c t balance, and l i f e s a t i s f a c t i o n (George and Gwyther, 1986). Studie s show there i s u s u a l l y one f a m i l y member i d e n t i f i e d as the primary c a r e g i v e r and due to p e r s i s t e n t s e x - r o l e d i f f e r e n c e s women are much more l i k e l y to assume t h i s r o l e (Brody, 1985; Shanas, 1979b; Soldo and Myllyluoma, 1983). In f a c t , 85% of c a r e g i v e r s are women, l e a d i n g Sommers (1985) to s t a t e that " f a m i l y " provided care i s a euphemism f o r the " c l o s e s t female r e l a t i v e " (p.10). In a d d i t i o n to women being the predominant p r o v i d e r s of home car e , some r e s e a r c h shows that women, compared to men, r e c e i v e l e s s support from f a m i l y , f r i e n d s , and h e a l t h p r o v i d e r s (Johnson, 1983; Polansky, 1982). For example, Polansky (1982) i n a study of 80 c a r e g i v e r s found t h a t 65% of the male c a r e g i v e r s r e c e i v e d formal a s s i s t a n c e compared to 42% of the female c a r e g i v e r s . I t i s i n t e r e s t i n g to s p e c u l a t e why female c a r e g i v e r s r e c e i v e l e s s support than t h e i r male c o u n t e r p a r t s . C a r e g i v i n g i s o f t e n p e r c e i v e d as an e x t e n s i o n of the t r a d i t i o n a l woman's r o l e . T r a d i t i o n a l l y , women's primary and most valued s o c i a l r o l e has been to p r o t e c t , nurture, and f o s t e r the growth of o t h e r s , p a r t i c u l a r l y f a m i l y members (Adams, 1971). T h e r e f o r e , i t may be assumed that women are more s k i l l e d and w i l l i n g to provide care than 7 men which may lead to fewer o f f e r s of a s s i s t a n c e . I t may a l s o be t h a t some women r e f u s e a s s i s t a n c e because they view o f f e r s of a s s i s t a n c e as a judgement on t h e i r competence as wife or homemaker. I t i s erroneous however, to assume that the r o l e of wife and homemaker i s comparable to the r o l e of c a r e g i v e r . I t i s not u n t i l women are given the o p p o r t u n i t y to t e l l t h e i r s t o r y that we w i l l understand s o c i a l support from the unique p e r s p e c t i v e of women i n the c a r e g i v i n g r o l e . Although there i s c l e a r evidence t h a t p e r c e i v e d s o c i a l support promotes w e l l - b e i n g and i n h i b i t s d i s e a s e (Cobb, 1976; Caplan, 1964; P i l i s u k and F r o l a n d , 1978; Shumaker and Brownell, 1984) there has been l i t t l e r e s e a r c h e x p l o r i n g support w i t h i n the context of c a r e g i v i n g . There has been even l e s s r e s e a r c h e x p l o r i n g the s u b j e c t i v e nature of s o c i a l support. T h i s i s p a r t i c u l a r l y important as i t i s the s u b j e c t i v e p e r c e p t i o n of support r a t h e r than the frequency of support, t h a t c o r r e l a t e s with p o s i t i v e h e a l t h outcomes f o r the c a r e g i v e r ( Z a r i t and Z a r i t , 1982). At t h i s time we know ve r y l i t t l e about women's pe r c e p t i o n s of support while i n the c a r e g i v i n g r o l e . What we do know i s that the c a r e g i v i n g r o l e i s o f t e n arduous and overwhelming i n i t s demands, and th a t s o c i a l support i s l i n k e d to w e l l - b e i n g . T h i s suggests t h a t women c a r e g i v e r s would l i k e l y b e n e f i t from s o c i a l support. But what type o£ support would be b e n e f i c i a l f o r women? what meaning do women give to s o c i a l support? How does support f i t i n t o the context of c a r e g i v i n g ? As h e a l t h p r o v i d e r s , nurses are the major source of formal support to f a m i l i e s with c h r o n i c a l l y i l l members. Ther e f o r e , i t becomes imperative to understand s o c i a l support from the p e r s p e c t i v e of the women themselves. Problem Statement P a r a l l e l to the i n c r e a s e i n c h r o n i c i l l n e s s i s an in c r e a s e i n f a m i l y provided home ca r e . In rec e n t years an abundant amount of r e s e a r c h has become a v a i l a b l e on f a m i l y c a r e g i v i n g , some of which focuses on women. However, the m a j o r i t y of t h i s r e s e a r c h i s q u a n t i t a t i v e i n nature and s p e c i f i c a l l y addresses c a r e g i v e r s of the e l d e r l y . To date there i s ve r y l i t t l e q u a l i t a t i v e r e s e a r c h on women as c a r e g i v e r s to the c h r o n i c a l l y i l l , and no s t u d i e s a v a i l a b l e on wives as c a r e g i v e r s to husbands with m u l t i p l e s c l e r o s i s . Because a v a i l a b l e r e s e a r c h i n d i c a t e s t h a t c a r e g i v i n g i s a s s o c i a t e d with p h y s i c a l and p s y c h o s o c i a l burden, and evidence shows that t h i s burden may be moderated by per c e i v e d a v a i l a b i l i t y of s o c i a l support, i t i s important t h a t c a r e g i v e r p e r c e p t i o n s of s o c i a l support be exp l o r e d . At present there i s a lack of knowledge and understanding of s o c i a l support as a r t i c u l a t e d by wives who provide care to husbands with m u l t i p l e s c l e r o s i s . Purpose 0£ The Study The purpose of t h i s study i s to explore and d e s c r i b e s o c i a l support as p e r c e i v e d and experienced by women who l i v e with and provide care to husbands with m u l t i p l e s c l e r o s i s . D e f i n i t i o n Of Terms 1. C a r e g i v e r : A wife who i s r e s p o n s i b l e f o r p r o v i d i n g or c o o r d i n a t i n g d a i l y a c t i v i t i e s while l i v i n g with a husband who has m u l t i p l e s c l e r o s i s . 2. M u l t i p l e S c l e r o s i s : A c h r o n i c d i s e a s e of the c e n t r a l nervous system, u s u a l l y p r o g r e s s i v e i n nature and c h a r a c t e r i z e d by e i t h e r exacerbations and remissions or continuous p r o g r e s s i o n . Symptoms occur s i n g l y or i n combination and commonly i n c l u d e m a l f u n c t i o n i n v i s i o n , speech, c o o r d i n a t i o n , s e n s a t i o n , use of e x t r e m i t i e s , and c o n t r o l of bowel and bladder (Hashimoto and Paty, 1986).^ 3. S o c i a l Support: An i n d i v i d u a l ' s p e r c e p t i o n of having h i s or her need f o r p r a c t i c a l a s s i s t a n c e , i n f o r m a t i o n , a f f e c t i o n , esteem, understanding and acceptance f u l f i l l e d through a c t u a l or symbolic i n t e r a c t i o n with o t h e r s . Assumptions The researcher assumes that s o c i a l support has an impact on the experience of women l i v i n g with and providing care to husbands with multiple s c l e r o s i s . It is also assumed that women are w i l l i n g and able to talk openly and honestly, thereby giving an accurate account of t h e i r perception of r e a l i t y . L i m i t a t i o n s This study is limited by the c h a r a c t e r i s t i c s of the participants in t h i s study. That i s , t h i s study only examines the experience of s o c i a l support in wives who: a) are of anglo-saxon background, b) l i v e in or near Vancouver, c) are associated with the Multiple Sclerosis Society, and d) are married and l i v i n g with husbands who have multiple s c l e r o s i s . In addition, the number of participants i s limited due to the time constraints of a master's thesis. It is acknowledged that these l i m i t a t i o n s produce a sample that represents a select group of women and thus the findings may not have the depth and richness of a more comprehensive sample. Summary This chapter has provided the background for examining wives' perceptions of s o c i a l support while l i v i n g with and caring for husbands with multiple s c l e r o s i s w i t h i n the context of a n u r s i n g problem. The purpose of t h i s study was presented as were the d e f i n i t i o n of terms, the assumptions, and the l i m i t a t i o n s . The f o l l o w i n g chapter w i l l review the a v a i l a b l e r e s e a r c h c o n s i d e r e d r e l e v a n t to t h i s study. CHAPTER 2 SELECTED LITERATURE REVIEW Introduction Social support has received much attention in academic l i t e r a t u r e . Although the study of s o c i a l support is plagued with conceptual problems, research into this phenomenon repeatedly shows that perceived support i s associated with physical and psychological health and low leve l s of support are linked with high lev e l s of stress. Clearly, the onset of a chronic disabling disease such as multiple s c l e r o s i s i s a s t r e s s f u l event, and families, p a r t i c u l a r l y women, are often the primary providers of care to i l l family members. The provision of care i s also perceived to be a burden and is associated with high leve l s of stress. However, there has been l i t t l e research which examines perceptions of s o c i a l support while caring for a family member with a chronic i l l n e s s , and there was no research found that has examined wives' perceptions of s o c i a l support while l i v i n g with and caring for husbands who have multiple s c l e r o s i s . The l i t e r a t u r e review i s divided into two sections. The f i r s t section reviews the theoretical conceptualizations of s o c i a l support, and addresses the major contributions towards understanding t h i s phenomena. The second section reviews selected research that examines i n f o r m a l s o c i a l support provided to c a r e g i v e r s , formal support provided to c a r e g i v e r s , and the r e l a t i o n s h i p between s o c i a l support and the h e a l t h of f a m i l y c a r e g i v e r s . T h e o r e t i c a l C o n c e p t u a l i z a t i o n s of S o c i a l Support S o c i a l support i s an important concept i n the realm of n u r s i n g p r a c t i c e . Not o n l y does an assessment of s o c i a l support have i m p l i c a t i o n s f o r n u r s i n g i n t e r v e n t i o n s , nurses are major p r o v i d e r s of support to i n d i v i d u a l s and f a m i l i e s d e a l i n g with i l l n e s s . Consequently, there i s an increased need f o r nurses to understand s o c i a l support as a f a c t o r i n h e a l t h and i l l n e s s . One of the d i f f i c u l t i e s i s t h a t the r e s e a r c h on s o c i a l support has been p r i m a r i l y a t h e o r e t i c a l (Brownell and Shumaker, 1984) and as a r e s u l t the concept of s o c i a l support i s not c l e a r l y d e f i n e d . The purpose of t h i s s e c t i o n i s to provide an overview of the major c o n t r i b u t i o n s toward understanding t h i s concept. An e a r l y c o n t r i b u t o r to the study of s o c i a l support was Gerald Caplan, a s o c i a l p s y c h i a t r i s t . In 1964, Caplan presented a mental h e a l t h model that focused on the r o l e of s i g n i f i c a n t others i n m a i n t a i n i n g the p s y c h o l o g i c a l and p h y s i c a l i n t e g r i t y of the i n d i v i d u a l over time. Caplan (1964) held t h a t one's primary s o c i a l group had 14 the power to p o s i t i v e l y (or n e g a t i v e l y ) i n f l u e n c e the h e a l t h outcomes f o r i n d i v i d u a l members. B u i l d i n g upon t h i s e a r l i e r work Caplan (1974) expanded t h i s c o n c e p t u a l i z a t i o n of s o c i a l support to i n c l u d e three elements i n which the s i g n i f i c a n t o t h e r s : (a) help m o b i l i z e the i n d i v i d u a l ' s p s y c h o l o g i c a l resources i n order to d e a l with emotional burdens; (b) share t a s k s ; and (c) provide the i n d i v i d u a l with e x t r a s u p p l i e s of money, m a t e r i a l s , t o o l s , s k i l l s , and c o g n i t i v e guidance to improve the i n d i v i d u a l ' s a b i l i t y to handle the s i t u a t i o n . Using t h i s understanding, s o c i a l support provided to wives of husbands with m u l t i p l e s c l e r o s i s might i n c l u d e emotional or i n s t r u m e n t a l a i d , or the p r o v i s i o n of goods or i n f o r m a t i o n , a l l of which serve to improve the wives' a b i l i t y to provide care to t h e i r husbands. Caplan (1974) claimed t h a t "such support may be of a c o n t i n u i n g nature or i n t e r m i t t e n t and s h o r t - t e r m and may be u t i l i z e d from time to time by the i n d i v i d u a l i n the event of an acute need or c r i s i s " (pp.5-6). Departing from Caplan's b e l i e f t h a t support i n c l u d e s i n s t r u m e n t a l a i d ( s h a r i n g t a s k s ) , Sidney Cobb (1976) i d e n t i f i e d support as c o n s i s t i n g of three types of i n f o r m a t i o n . T h e ^ f i r s t type of i n f o r m a t i o n leads the person to b e l i e v e he or she i s cared f o r and l o v e d . T h i s i n f o r m a t i o n i s t r a n s m i t t e d i n intimate s i t u a t i o n s i n v o l v i n g mutual t r u s t whereby the person's needs f o r a f f i l i a t i o n and nurturance are s a t i s f i e d . In s o c i a l support l i t e r a t u r e t h i s type of support i s o f t e n c a l l e d emotional support. The second type of i n f o r m a t i o n leads the person to b e l i e v e he or she i s valued and esteemed. T h i s i n f o r m a t i o n i s t r a n s m i t t e d i n s o c i a l or work s i t u a t i o n s and r e a f f i r m s the person's sense of personal worth. In s o c i a l support l i t e r a t u r e t h i s type of support i s o f t e n c a l l e d esteem support. The t h i r d type of i n f o r m a t i o n leads the person to b e l i e v e t h a t he or she belongs to a network of communication and mutual o b l i g a t i o n . T h i s type of i n f o r m a t i o n leads people to know the other people i n the network and p r o v i d e s i n f o r m a t i o n r e l e v a n t to a c c e s s i n g goods, s e r v i c e s , and r e s o u r c e s . Cobb has excluded i n s t r u m e n t a l a i d as a component of support as he b e l i e v e s t h a t the a c t u a l p r o v i s i o n of goods and s e r v i c e s may f o s t e r dependency, while i n f o r m a t i o n as he d e s c r i b e s i t tends to encourage independent behaviour. T h i s c o n c e p t u a l i z a t i o n holds t h a t although c a r e g i v e r s may have m u l t i p l e tasks to perform, the p r o v i s i o n of p r a c t i c a l a s s i s t a n c e w i l l f o s t e r dependency and thus l i k e l y compromise the c a r e g i v e r ' s s e l f - e s t e e m . Weiss (1974) c o n c e p t u a l i z e s support as the q u a l i t y of f e e l i n g s u s t a i n e d through the g r a t i f i c a t i o n of needs. Weiss i n v e s t i g a t e d newly d i v o r c e d people, and women who had r e c e n t l y moved to accommodate t h e i r husband's employment. What he d i s c o v e r e d was t h a t d i f f e r e n t types o£ relationships provided d i f f e r e n t kinds of support. For example, the l o s s of i n t i m a t e r e l a t i o n s h i p s r e s u l t e d i n the " l o n e l i n e s s of emotional i s o l a t i o n " (p.20) and could not be r e c o n c i l e d through f r i e n d s h i p s . The l o s s of f r i e n d s h i p s r e s u l t e d i n the " l o n e l i n e s s of s o c i a l i s o l a t i o n " (p.20) even though the women were h a p p i l y married. In a p p l y i n g these f i n d i n g s to c a r e g i v i n g s i t u a t i o n s the p o t e n t i a l e x i s t s f o r a wife whose m a r i t a l r e l a t i o n s h i p has d e t e r i o r a t e d due to the advance of m u l t i p l e s c l e r o s i s , t o experience "the l o n e l i n e s s of emotional i s o l a t i o n " . In a d d i t i o n , the i n c r e a s i n g demands of c a r e g i v i n g may l e a d t o fewer o p p o r t u n i t i e s f o r s o c i a l c o n t a c t thus r e s u l t i n g i n "the l o n e l i n e s s of s o c i a l i s o l a t i o n " . More r e c e n t l y , the idea of "two p a r t i c i p a n t s " has been added to the c o n c e p t u a l i z a t i o n of s o c i a l support. Shumaker and Brownell (1984) d e f i n e s o c i a l support as "an exchange of resources between two i n d i v i d u a l s , p e r c e i v e d by the p r o v i d e r or the r e c i p i e n t to be intended to enhance the w e l l - b e i n g of the r e c i p i e n t " ( p . 1 1 ) . In t h i s d e f i n i t i o n , the exchange of support may be p o s i t i v e , n e g a t i v e , or n e u t r a l (Shumaker and Brownell, 1984). This type of c o n c e p t u a l i z a t i o n i s u s e f u l i n understanding s o c i a l support from the p e r s p e c t i v e of the wives of husbands with m u l t i p l e s c l e r o s i s . What may be intended and p e r c e i v e d as h e l p f u l by the p r o v i d e r may not be perceived s i m i l a r l y by the r e c i p i e n t . For example, i s the support provided by health care professionals perceived by the caregiver, to be as useful as intended by the providers? In the above conceptualization of s o c i a l support r e c i p r o c i t y is the central theme. Shumaker and Brownell agree with Gouldner (1980) that a norm of r e c i p r o c i t y operates within our culture and that people usually return the benefits received from others. Greenberg (1980) contends that in receiving a benefit the recipient w i l l experience an uncomfortable state of tension or indebtedness. To reduce t h i s tension the recipient w i l l reciprocate either d i r e c t l y or i n d i r e c t l y , or may even refuse the offered support. In cases of chronic i l l n e s s , where help i s often needed over an extended time period, "the recipient's i n a b i l i t y to reciprocate f u l l y may become increasingly apparent and asking for help may become e s p e c i a l l y d i f f i c u l t " (Shumaker and Brownell, 1984, p.14). If r e c i p r o c i t y cannot be f u l f i l l e d , then relationships between the people involved may disintegrate. For example, caregiving wives may over time, be less able to reciprocate due to i n t e n s i f i e d caregiving demands. Thus, at a time when they most need support these women may find that t h e i r relationships have weakened and they might even r e f u s e help because they f e e l uncomfortable i n t h e i r i n a b i l i t y to r e c i p r o c a t e . Although d e f i n i t i o n s of s o c i a l support vary c o n s i d e r a b l y , the u n d e r l y i n g assumption of a l l i n v e s t i g a t i o n s of t h i s phenomena i s that "supported people are p h y s i c a l l y and e m o t i o n a l l y h e a l t h i e r than non-supported people" (Shumaker and Brownell, 1984, p.22). Many s t u d i e s have provided evidence of the r e l a t i o n s h i p between support and w e l l - b e i n g , however, there i s a lack of agreement about how s o c i a l support promotes w e l l -being. C u r r e n t l y , two models attempt to e x p l a i n how s o c i a l support p r o t e c t s h e a l t h and prevents d i s e a s e . According to Robertson (1987), one model proposes t h a t s o c i a l support "has a d i r e c t e f f e c t on h e a l t h and w e l l - b e i n g and t h e r e f o r e , i s b e n e f i c i a l on an on-going b a s i s , r e g a r d l e s s of whether or not a person i s under s t r e s s " (p.191). The a l t e r n a t e model holds t h a t support a f f e c t s the w e l l - b e i n g of an i n d i v i d u a l o n l y when he or she i s under s t r e s s . T h i s model i s c a l l e d the " b u f f e r i n g model" because i t assumes t h a t support p r o t e c t s people "from the p o t e n t i a l l y pathogenic i n f l u e n c e of s t r e s s f u l events" (p.191). In t h i s model the p e r c e p t i o n of support i n c r e a s e s the i n d i v i d u a l ' s a b i l i t y to cope with the r e a l or p e r c e i v e d s t r e s s o r . In an ext e n s i v e review of the r e s e a r c h , Cohen and W i l l s (1985) concluded t h a t there i s evidence to support both the d i r e c t e f f e c t model and the b u f f e r i n g model. S o c i a l Support And C a r e g i v e r s Although the concepts of s o c i a l support and c a r e g i v e r s have r e c e i v e d s u b s t a n t i a l a t t e n t i o n i n the l i t e r a t u r e , few s t u d i e s have explored s o c i a l support from the p e r s p e c t i v e of the c a r e g i v e r . Those s t u d i e s t h a t are a v a i l a b l e p r i m a r i l y focus on the support needs of e l d e r l y c a r e g i v e r s . Consequently, t h i s l i t e r a t u r e review r e f l e c t s s o c i a l support as r e p o r t e d by e l d e r l y c a r e g i v e r s . Although not s p e c i f i c to the purpose of t h i s study t h i s body of l i t e r a t u r e i s c o n s i d e r e d r e l e v a n t due to the predominant focus on female and spousal p e r c e p t i o n s of support which provide a b a s i s f o r understanding m i d - l i f e wives' p e r c e p t i o n s of support while c a r i n g f o r husbands with m u l t i p l e s c l e r o s i s . I n i t i a l l y reviewed i s the a v a i l a b l e r e s e a r c h t h a t examines i n f o r m a l s o c i a l support provided to c a r e g i v e r s . Next, the formal support provided to c a r e g i v e r s i s reviewed and f i n a l l y , the r e l a t i o n s h i p between s o c i a l support and the w e l l - b e i n g of c a r e g i v e r s i s addressed. Informal S o c i a l Support A v a i l a b l e to C a r e g i v e r s A l i m i t e d number of s t u d i e s were found t h a t explored i n f o r m a l s o c i a l support a v a i l a b l e to c a r e g i v e r s . T h i s s e c t i o n reviews four s t u d i e s t h a t focus on c a r e g i v e r s ' p e r c e p t i o n s of s o c i a l support r e c e i v e d from f a m i l y members and f r i e n d s . One study t h a t o f f e r s i n s i g h t i n t o f a m i l y - p r o v i d e d support to c a r e g i v e r s i s by S c o t t , Roberto, and Hutton (1986). S c o t t and a s s o c i a t e s examined the i n s t r u m e n t a l , s o c i a l - e m o t i o n a l , and p e r c e i v e d adequacy of support provided by f a m i l i e s to 23 primary c a r e g i v e r s of Alzheimer's p a t i e n t s . Of the c a r e g i v e r s , 20 were spouses and three were daughters with a t o t a l of 15 female c a r e g i v e r s . The mean age of a l l c a r e g i v e r s was 64.4 y e a r s . In a d d i t i o n , there were 21 other f a m i l y members in c l u d e d i n the i n t e r v i e w s . Ratings of a l l types of i n s t r u m e n t a l a s s i s t a n c e , such as f i n a n c i a l h e l p , p h y s i c a l care of the p a t i e n t , and p r o v i d i n g i n f o r m a t i o n , were d e r i v e d by summing the number of d i f f e r e n t types of h e l p . S o c i a l - e m o t i o n a l support, coded as low, moderate, or high, was r a t e d on two dimensions c o n s i s t i n g of the degree of p o s i t i v e a f f e c t and the degree of negative a f f e c t . Adequacy of t o t a l support ( i n s t r u m e n t a l and s o c i a l - e m o t i o n a l ) was coded as "more than enough support", "enough support", and "not enough support". The f i n d i n g s of t h i s study show t h a t the major tasks of c a r e g i v i n g were the r e s p o n s i b i l i t y of the primary c a r e g i v e r . There was n e g l i g i b l e f i n a n c i a l a s s i s t a n c e and o n l y three of the 21 f a m i l y members a s s i s t e d with accompanying the patient to and from doctor appointments, while only seven family members assisted with domestic help such as cleaning or cooking. Moreover, few family members (n=5) v i s i t e d the caregiver or patient and few (n=5) assisted with the physical tasks of caregiving. The most frequent type of assistance included providing respite care such as staying with the patient or taking the patient out (n=ll), and providing information or advice (n=9). The types of assistance most appreciated by caregivers were home v i s i t s and having someone stay with the patient so that the caregiver could take a t r i p , r e s t , run errands, or get out of the house for s o c i a l a c t i v i t i e s . These findings show that although caregivers appreciate s p e c i f i c types of assistance, family members provide l i t t l e in the way of instrumental support. Fift e e n of the 23 caregivers indicated a cohesive s t y l e of caregiving in which there was high positive social-emotional support from family members. These caregivers expressed few family problems related to care of the patient. This may be due, however, to the finding that the primary caregiver received l i t t l e assistance with actual patient care, thus decreasing the p r o b a b i l i t y for c o n f l i c t . The remaining caregivers (n=8) reported a combination of positive and negative levels of s o c i a l -emotional support. The kinds of problems reported included lack of v i s i t s from family members, disagreements over the type o£ care r e q u i r e d , and disagreements over the p a t i e n t ' s f u n c t i o n i n g c a p a c i t y . F i n a l l y , c a r e g i v e r s were r a t e d on t h e i r p e r c e i v e d s a t i s f a c t i o n with the amount of t o t a l i n s t r u m e n t a l and s o c i a l - e m o t i o n a l support r e c e i v e d . One-third (n=8) of the c a r e g i v e r s r e c e i v e d more than enough support, 1 1 r e c e i v e d enough support, and four r e c e i v e d l e s s than adequate support. T h i s l a s t c a t e g o r y mentioned i n f r e q u e n t v i s i t s by f a m i l y members, lack of s i t u a t i o n a l understanding, and lack of a s s i s t a n c e with housework or r e s p i t e care as some of the areas where support was l a c k i n g . O v e r a l l , the m a j o r i t y of c a r e g i v e r s were s a t i s f i e d with the support they r e c e i v e d . Although the f i n d i n g s of t h i s study cannot be g e n e r a l i z e d due to the l i m i t a t i o n of sample s i z e , i t i s i n t e r e s t i n g to s p e c u l a t e why c a r e g i v e r s i n t h i s study are g e n e r a l l y s a t i s f i e d with the minimal amount of support they r e c e i v e . Perhaps the answer l i e s i n our s o c i e t a l e x p e c t a t i o n s of the m a r i t a l dyad i n which the promise of " f o r b e t t e r or worse" allows spousal c a r e g i v e r s to expand t h e i r e x p e c t a t i o n s of marriage a c c o r d i n g to t h e i r c u r r e n t circumstances. I f the p a r t n e r s have been a primary source of support f o r each other through t h e i r married years, i t may be they expect to continue t h i s d u r i n g a long term i l l n e s s without a s s i s t a n c e from f a m i l y or f r i e n d s . Perhaps i t i s d i f f i c u l t f o r some spouses to acknowledge the need f o r a s s i s t a n c e i f i t i s seen to r e f l e c t on t h e i r sense of competence as c a r e p r o v i d e r . A f i n a l reason these c a r e g i v e r s were s a t i s f i e d c o u l d be t h a t they were e l d e r l y , and compared to m i d - l i f e c a r e g i v e r s , were l i k e l y to be " f r e e of competing demands t h a t would tend to i n c r e a s e c a r e g i v e r d i s s a t i s f a c t i o n " (Hess and Soldo, 1985, p.81). S a t i s f a c t i o n and d i s s a t i s f a c t i o n with c a r e g i v i n g was e x p l o r e d i n a q u a l i t a t i v e study of 47 c a r e g i v e r s by Marcus and Jaeger (1982) who found t h a t c e r t a i n aspects of support c o n t r i b u t e d to the degree of s a t i s f a c t i o n with the c a r e g i v i n g r o l e . . When asked the q u e s t i o n "What makes a day e a s y / d i f f i c u l t ? " , four themes emerged. C a r e g i v e r s r e p o r t e d t h a t being r e l i e v e d from the r o u t i n e of c a r e g i v i n g made l i f e e a s i e r , v i s i t o r s eased t h e i r burden, c a r e g i v i n g was e a s i e r when the c a r e r e c e i v e r was not s i c k , and being t i e d to the house was d i f f i c u l t to t o l e r a t e . In response to the q u e s t i o n "Of a l l the t h i n g s you do f o r your r e l a t i v e what g i v e s you the most s a t i s f a c t i o n , the most p l e a s u r e ? " , the most frequent responses (n=20) were: coping, g e t t i n g r e s u l t s , r e c e i v i n g r e c o g n i t i o n , "to know I am doing a good j o b " . These responses were followed by: s e e i n g improvement i n the c a r e r e c e i v e r , d i s t r a c t i o n s from c a r e g i v i n g , companionship, "that I s t i l l have somebody to t a l k t o " , and f i n a l l y "nothing g i v e s me p l e a s u r e " . The r e s u l t s of t h i s r e s e a r c h show the importance of both Instrumental and emotional support as perceived by the c a r e g i v e r s themselves. In a d d i t i o n , i t a l s o seems t h a t s a t i s f a c t i o n gained from p r o v i d i n g good care l i k e l y heightens the c a r e g i v e r ' s s e l f - e s t e e m . Repeated r e s e a r c h shows that spouses, when a v a i l a b l e , w i l l i n g l y assume the r e s p o n s i b i l i t y of primary c a r e g i v e r (Cantor, 1983; Johnson, 1983; Shanas, 1979b). Cantor (1975; 1980) d e s c r i b e s the h i e r a r c h i c a l nature of support i n which f r i e n d s and neighbors a s s i s t o n l y when f a m i l y members are not a v a i l a b l e and t h a t w i t h i n the f a m i l y there i s one person, u s u a l l y female, who assumes primary r e s p o n s i b i l i t y . Eggert and a s s o c i a t e s (1977) found t h a t i n severe c h r o n i c c o n d i t i o n s f a m i l y supports become eroded over time. Presumably then, a wife c a r i n g f o r a husband with a d e b i l i t a t i n g i l l n e s s such as m u l t i p l e s c l e r o s i s , w i l l not onl y assume major c a r e g i v i n g r e s p o n s i b i l i t i e s but may f i n d t h a t support i s o n l y a v a i l a b l e when she i s unable to f u l f i l l the r o l e h e r s e l f . T h i s next study compares support a v a i l a b l e to spousal c a r e g i v e r s versus other-family-member c a r e g i v e r s . In an e x p l o r a t o r y study, Johnson (1983) i n v e s t i g a t e d s o c i a l support i n dyadic f a m i l y r e l a t i o n s , u s i n g a sample of 167 f a m i l i e s of p o s t - h o s p i t a l i z e d e l d e r l y persons. Not s u r p r i s i n g l y , among those p a t i e n t s who were married (45%), the spouse (66% female) was i d e n t i f i e d as the major c a r e g i v e r . T h i r t y - n i n e percent of the primary caregivers were off-spring (59% female) and 16% of the primary caregivers were other r e l a t i v e s . Consistent with Cantor's findings Johnson found that family members are available as caregivers in s e r i a l order. Shanas (1979a) conceptualizes t h i s as the "p r i n c i p l e of subs t i t u t i o n " whereby i f one individual is unable to help, another w i l l step i n . In t h i s study, married patients, whose spouse was almost always the major caregiver, received much less support from the o f f -spring than in situations where the patient was widowed. In families where a spouse was present the children were less available as a source of support for either the caregiver or receiver. Johnson also noted that the more personalized care, such as housekeeping, shopping and personal hygiene of the patient, were r a r e l y performed by an off-spring when a spousal caregiver was present. The areas in which off-spring did a s s i s t t h e i r caregiving parent was with shopping and chauffeuring. Even when o f f -spring were the major caregivers the frequency of their support to the disabled parent was less than when a spouse was caregiver. In addition, off-spring, t y p i c a l of mid- l i f e caregivers, were more l i k e l y to describe ambivalence and c o n f l i c t in their role and reported more competing demands stemming from other commitments. Further to the Johnson study, in which there was limited instrumental support available to spousal c a r e g i v e r s , F i t t i n g , Rabins, Lucas and Eastham (1986) found a high degree of emotional support provided to spousal c a r e g i v e r s . A l l 54 c a r e g i v e r s i n t h e i r study spoke with a f r i e n d or f a m i l y member a t l e a s t once a week and the m a j o r i t y spoke with someone on a d a i l y b a s i s . Seventy-three percent of spousal c a r e g i v e r s r e p o r t e d having an a d u l t c h i l d as a c o n f i d a n t and 80% had at l e a s t one c h i l d with whom they had a r e c i p r o c a l r e l a t i o n s h i p . A r e l a t i o n s h i p was d e f i n e d as r e c i p r o c a l i f the c o n f i d a n t was r e p o r t e d to d i s c u s s h i s or her problems with the respondent. E i g h t y - f i v e percent of the male and female spousal c a r e g i v e r s i d e n t i f i e d a r e c i p r o c a l r e l a t i o n s h i p with a t l e a s t one c o n f i d a n t . F u r t h e r , 96% of the husband c a r e g i v e r s and 100% of the female c a r e g i v e r s had a t l e a s t one c o n f i d a n t e with whom they d i s c u s s e d t h e i r problems. I n t e r e s t i n g l y , 16.7%, mainly male c a r e g i v e r s , r e p o r t e d an improvement i n t h e i r spousal r e l a t i o n s h i p s i n c e the onset of the dementing i l l n e s s , while 42.6%, mainly female c a r e g i v e r s , r e p o r t e d a d e t e r i o r a t i o n i n t h e i r r e l a t i o n s h i p . T h i s might suggest t h a t wife c a r e g i v e r s r e c e i v e l e s s spousal support than husband c a r e g i v e r s . T h i s s e c t i o n has addressed i n f o r m a l s o c i a l support provided to f a m i l y c a r e g i v e r s . The a v a i l a b l e r e s e a r c h shows t h a t spousal c a r e g i v e r s , most f r e q u e n t l y female, r e c e i v e l e s s support from f a m i l y and f r i e n d s than other c a r e g i v e r c a t e g o r i e s . The s t u d i e s presented show that primary c a r e g i v e r s r e c e i v e l i m i t e d i n s t r u m e n t a l support but are g e n e r a l l y s a t i s f i e d with the emotional support r e c e i v e d . The f o l l o w i n g s e c t i o n addresses formal support r e c e i v e d by c a r e g i v e r s . Formal S o c i a l Support A v a i l a b l e to C a r e g i v e r s Given the l i m i t e d amount of in s t r u m e n t a l support wife c a r e g i v e r s r e c e i v e from f a m i l y and f r i e n d s , and the expressed d e s i r e f o r r e l i e f from c a r e g i v i n g r e s p o n s i b i l i t i e s , i t i s important to expl o r e the r o l e of h e a l t h care p r o f e s s i o n a l s i n the p r o v i s i o n of formal support to primary c a r e g i v e r s . I t i s i n t e r e s t i n g to note the p a u c i t y of a v a i l a b l e r e s e a r c h i n t h i s a r e a , and consequently the f o l l o w i n g f i v e s t u d i e s provide l i m i t e d i n s i g h t i n t o formal s e r v i c e s a v a i l a b l e to c a r e g i v e r s . In a d d i t i o n to examining i n f o r m a l supports, Johnson (1983), s t u d i e d the use of formal supports by c a r e g i v e r s In a study of 167 f a m i l i e s she found t h a t the use of a l l formal supports was lower among spousal c a r e g i v e r s than non-spousal c a r e g i v e r s . In f a c t , formal supports were used by onl y 13% of spousal c a r e g i v e r s , 26% by o f f -s p r i n g c a r e g i v e r s , and 40% by "other r e l a t i v e " c a r e g i v e r s . She suggests t h a t spousal c a r e g i v e r s use l e s formal supports because of the North American f a m i l y system. "Husbands and wives are expected not onl y to f u l f i l l one's i n s t r u m e n t a l needs but a l s o to provide s o c i a l and emotional s a t i s f a c t i o n " (p.382). T h e r e f o r e , i t should not be s u r p r i s i n g t h a t spousal c a r e g i v e r s expect c o n t i n u i t y of these m a r i t a l e x p e c t a t i o n s when f a c i n g c h r o n i c i l l n e s s , and consequently seek and use l e s s formal support than o f f - s p r i n g or other-family-member c a r e g i v e r s . In a n a l y z i n g the m a r i t a l dyad, Johnson (1983) found t h a t husband c a r e g i v e r s were more l i k e l y to seek formal s e r v i c e s than wife c a r e g i v e r s . Moreover, husband c a r e g i v e r s r e c e i v e d more support from other f a m i l y members. Johnson suggests t h i s i s a p r e d i c t a b l e f i n d i n g g i v e n the lower p a r t i c i p a t i o n by males i n domestic f u n c t i o n s i n g e n e r a l . As w e l l , husband c a r e g i v e r s experienced s i g n i f i c a n t l y l e s s s t r a i n , p o s s i b l y a r e s u l t of r e c e i v i n g more support from f a m i l y , r e l a t i v e s and formal s e r v i c e s . I t should be noted t h a t i n a d d i t i o n to not d e f i n i n g "formal supports", Johnson d i d not attempt to d i s c o v e r the c a r e g i v e r s ' p e r c e p t i o n of s a t i s f a c t i o n with r e c e i v e d a s s i s t a n c e . Thus the u s e f u l n e s s of these f i n d i n g s i s l i m i t e d . Congruent with Johnson's f i n d i n g s , Polansky (1982), i n a study of 80 e l d e r l y c a r e g i v e r s , concluded t h a t most c a r e g i v e r s performed strenuous n u r s i n g t a s k s unaided and t h a t fewer than h a l f r e c e i v e d formal home s e r v i c e s . In a d d i t i o n , she found t h a t 65% of the male c a r e g i v e r s (husbands and sons) received formal health services whereas only 42% of the female caregivers (wives and daughters) had such help. Furthermore, 44% of the male caregivers received services more than three days a week, whereas only 13% of the females had help that frequently. She attributed t h i s in part to health personnel being less w i l l i n g to offer assistance when the caregiver is female. Again, the caregivers' perception of s a t i s f a c t i o n with formal supports was not addressed. In contrast, Marcus and Jaeger (1982), in a Canadian study of 47 el d e r l y caregivers, found that male and female caregivers received proportionately the same le v e l of formal services and that a l l but two caregivers received some form of formal assistance. This difference may be a r e f l e c t i o n of the Canadian system of universal health care: t h i s might be p a r t i c u l a r l y relevant for mid-l i f e wives whose husbands are no longer able to contribute f i n a n c i a l l y . When formal health care does not drain finances, women might be more receptive to accepting these services,. In discussing the a v a i l a b i l i t y of formal support services to caregivers, the research findings of Archbold (1980) are worth noting. Archbold used a focused interview approach with s i x families who had an el d e r l y parent one or more years post-stroke. T y p i c a l l y , a female mid-life offspring was the primary caregiver. Archbold reported that a l l families agreed that not enough home services had been provided when their post-stroke parent was discharged from the r e h a b i l i t a t i o n h o s p i t a l . As well, no professional assessment had been undertaken to evaluate the family's a b i l i t y to cope phy s i c a l l y , emotionally, or f i n a n c i a l l y with the recovering patient. A l l families reported they were unprepared and that they "did not remember any health professional discussing the issues related to the care-giving s i t u a t i o n " (p.81). In conjunction with the general lack of formal support services, the families experienced a loss of contact with the health care system. Once the family was judged as managing adequately, services were discontinued. This l e f t the family physician (who was not involved with the treatment and therefore less able to provide the needed information) as the only health care professional involved with the family. The re s u l t was that families f e l t stranded and were l e f t with no dire c t l i n e to those most familiar with their problems. This experience i s corroborated by Hayter (1982) and Waso (1985), who found that families were often frustrated and d i s t r u s t f u l of the health care system. Caregivers in these two studies reported that once a diagnosis was made, physicians tended to withdraw th e i r services, leaving the caregiver with feelings of hopelessness and limited guidelines for performing their r o l e . In a Canadian study, Robertson and Reisner (1982) interviewed 26 primary caregivers of persons with dementia. A l l but one of the caregivers were female, 11 were spouses, 8 were daughters. The average age of the caregivers was 60.5 years. The caregivers' knowledge and u t i l i z a t i o n of home support services was assessed, as was their expressed need for these services. Although women caring for husbands with multiple s c l e r o s i s do not have to deal with the same memory and behavioral deteriorations as seen with dememtia, the gender of the sample and the Canadian context c l o s e l y f i t the parameters of t h i s t h e s i s . More than one-half (n=17) of the caregivers expressed the need for community r e l i e f services such as day care, holiday and weekend r e l i e f . Approximately the same number (n=14) were aware of these services. Despite t h i s , these services were being u t i l i z e d by only four of the women. The authors suggest that t h i s may r e f l e c t a lack of a c c e s s i b i l i t y of these services, or that the exist i n g services do not meet the perceived needs of the caregivers. Most of the caregivers who expressed a need for home nursing (n=14), meals-on-wheels (n=5), or s o c i a l work services (n=ll) were in fact receiving these services. However, only one-half of the caregivers who expressed the need for homemaking services (n=14) were a c t u a l l y r e c e i v i n g those s e r v i c e s . T h i s was an unexpected f i n d i n g as these s e r v i c e s are r e a d i l y a v a i l a b l e . The authors s p e c u l a t e that c o s t may have been a c t i n g as a d e t e r r e n t . In summary, t h i s r e s e a r c h shows there i s l i m i t e d understanding of formal h e a l t h support s e r v i c e s provided to c a r e g i v e r s . Although the f i n d i n g s are mixed, wives g e n e r a l l y r e c e i v e fewer formal supports than husbands. However, the a v a i l a b l e r e s e a r c h has not adequately addressed the c a r e g i v e r s ' p e r c e p t i o n s of these s e r v i c e s and we know l i t t l e about the p e r c e i v e d s a t i s f a c t i o n with formal s e r v i c e s a v a i l a b l e to c a r e g i v e r s . S o c i a l Support and the Health of C a r e g i v e r s Although the l i n k between s o c i a l support and p h y s i c a l and mental h e a l t h has been w e l l e s t a b l i s h e d through r e s e a r c h , there i s s u r p r i s i n g l y l i t t l e r e s e a r c h t h a t has examined the h e a l t h outcomes of s o c i a l support provided to c a r e g i v e r s . C o n s i d e r i n g t h a t the a b i l i t y of the c a r e g i v e r to provide care i s a c r u c i a l f a c t o r i n m a i n t a i n i n g a d i s a b l e d person at home, i t becomes c r u c i a l to understand the impact of s o c i a l support on the h e a l t h of the c a r e g i v e r . Those s t u d i e s that have expl o r e d s o c i a l support and i t s r e l a t i o n to h e a l t h w i l l now be reviewed. In a study of the w e l l - b e i n g ( p h y s i c a l h e a l t h , mental h e a l t h , f i n a n c i a l r e s o u r c e s , s o c i a l p a r t i c i p a t i o n ) of 510 predominantly female c a r e g i v e r s , George and Gwyther (1986) found s t a t i s t i c a l l y s i g n i f i c a n t (.01) relationships between a l l four dimensions of well-being and perceived s o c i a l support. "Caregivers who do not need more s o c i a l support report higher well-being than those who desire more assistance from their friends and kin" (p.258). On the strength of these and other findings the authors suggest that i t i s the c h a r a c t e r i s t i c s of the caregiving s i t u a t i o n and the resources available to the caregiver, rather than the condition of the patient, that most d i r e c t l y a f f e c t caregiver well-being. Consistent with t h i s finding Fengler and Goodrich (1979), in a study of wives as caregivers (n=15), found that wives with high levels of l i f e s a t i s f a c t i o n reported greater s a t i s f a c t i o n with the amount of expressive and instrumental support received by family and friends. In addition, the support of friends, sympathizers, children, or r e l a t i v e s d i f f e r e n t i a t e d those wives in the high l i f e s a t i s f a c t i o n group from those in the low l i f e s a t i s f a c t i o n group. Not only i s support associated with caregiver well-being but one study has correlated i t to levels of burden. Scott and associates (1986) found that caregivers who were rated as not receiving enough support reported greater burden than those who were rated as receiving adequate support. Interestingly however, those caregivers that were rated as receiving more than enough support reported similar amounts of burden to those not receiving enough support. The authors suggest that these caregivers may be receiving increased support from family primarily because they were most at r i s k for dysfunction. These research findings must be viewed with caution. Zarit and Zarit (1982) point out that even though some research correlates s o c i a l support with burden we must not make the " i n f e r e n t i a l leap" that more s o c i a l support leads to less burden. They go on to say that most of this research has not c l e a r l y defined what support i s and, as noted in the previous two sections, i t i s the frequency of contacts from family, friends, and health providers that i s commonly used as the measurement of support. This ignores the subjective nature of support. In addition, frequency as a measurement does not address the potential for support to be p o s i t i v e l y or negatively valued. Clearly, in order to provide suitable and useful s o c i a l support to wives providing care to husbands with multiple s c l e r o s i s , s o c i a l support must be understood from the subjective perspective of the wives themselves. Summary This chapter presented the l i t e r a t u r e in two sections. The f i r s t section discussed the major contributions towards understanding the phenomena of s o c i a l support. The d i v e r s i t y of conceptual d e f i n i t i o n s of s o c i a l support was prov i d e d , which i n t u r n , r e f l e c t s the d i f f i c u l t i e s i n understanding t h i s complex concept. Consequently, r e s e a r c h i n t o s o c i a l support has been unable t o c l e a r l y i d e n t i f y how support a c t s t o promote h e a l t h and prevent i l l n e s s . The second s e c t i o n examined the l i m i t e d r e s e a r c h a v a i l a b l e t h a t has explored the type, source, and adequacy of both formal and i n f o r m a l support a v a i l a b l e t o c a r e g i v e r s . As w e l l , the h e a l t h outcomes of support provided to c a r e g i v e r s was addressed. The f o l l o w i n g chapter d e s c r i b e s the methodology used i n t h i s r e s e a r c h which e x p l o r e s wives' p e r c e p t i o n s of s o c i a l support. CHAPTER THREE METHODOLOGY Introduction Phenomenology was the method chosen for th i s study. Qualitative methods, such as phenomenology, are used when there is l i t t l e known about a phenomenon and attempt to "describe the human experience as i t i s l i v e d " (Omery, 1983, p.50). As there is limited knowledge available concerning caregivers' perceptions of support, t h i s methodology provided a mechanism for gaining such an understanding. This chapter describes the methodology used for th i s study. Five major areas w i l l be discussed: the phenomenological perspective, the selection of participants, data c o l l e c t i o n , data analysis, and e t h i c a l considerations. Phenomenological Perspective Presently there are two major approaches to research: the quantitative method and the q u a l i t a t i v e method. The quantitative method attempts to understand phenomena by reducing a phenomenon to select variables which are then observed and analyzed to determine s t a t i s t i c a l p r o b a b i l i t i e s and relationships (Duffy, 1985). A l t e r n a t i v e l y , the q u a l i t a t i v e method seeks to understand phenomena that are not well understood, by studying the whole of a phenomenon within i t s natural environment (Knaack, 1984). The purpose of t h i s method i s to deepen the understanding of the phenomenon under investigation by discovering how persons interpret and give meaning to situations (Rist, 1979). Phenomenology, the q u a l i t a t i v e method used in t h i s study, is both a philosophy and a methodology. As a philosophy, phenomenology i s based on the b e l i e f that our world is s o c i a l in nature and is a constant flow of interactions between and among people, events, and objects. In addition, events and objects are important only through the meaning people attach to them. A further b e l i e f holds that r e a l i t y i s a subjective experience and each person has his or her own r e a l i t y of a s i t u a t i o n ( O i l e r , 1981). Therefore, i t i s the meaning a woman attaches to her support systems that i s important, and that meaning w i l l vary from woman to woman; each woman's experience i s unique because each woman has her own r e a l i t y . It i s out of the philosophy of phenomenology that the method i s derived. Phenomenology as a method seeks to explain the nature of human phenomena (Knaack, 1984). It seeks to understand "the cognitive subjective perspective of the person who has the experience and the e f f e c t that perspective has on the... behavior of that i n d i v i d u a l " (Omery, 1983, p.50). It i s a search for meaning without any preconceptions about what t h a t meaning might be. Th e r e f o r e , the r e s e a r c h e r must s e t a s i d e any b e l i e f s about what the experience means and work towards understanding the experience from the i n d i v i d u a l ' s p e r s p e c t i v e . In t h i s way, predetermined e x p e c t a t i o n s or c a t e g o r i e s are not a p p l i e d t o the experience; r a t h e r , the meaning emerges from the accounts of the i n d i v i d u a l s i n v o l v e d . S e l e c t i o n of P a r t i c i p a n t s C r i t e r i a f o r S e l e c t i o n S i x c r i t e r i a were used i n s e l e c t i n g women f o r t h i s study. 1. P a r t i c i p a n t s were twenty years of age or over. 2. P a r t i c i p a n t s were v e r b a l l y f l u e n t i n E n g l i s h . 3 . P a r t i c i p a n t s l i v e d i n or near Vancouver. 4. P a r t i c i p a n t s l i v e d a t home with a spouse who was diagnosed with m u l t i p l e s c l e r o s i s . 5. The spouse with m u l t i p l e s c l e r o s i s was i n a s t a t e of r e m i s s i o n . 6. The spouse with m u l t i p l e s c l e r o s i s was d e a l i n g with no other acute or c h r o n i c i l l n e s s e s t h a t r e q u i r e d medical a t t e n t i o n . S e l e c t i o n Procedure P a r t i c i p a n t s f o r t h i s study were l o c a t e d through the M u l t i p l e S c l e r o s i s S o c i e t y of Vancouver. The n u r s i n g s t a f f at the Multiple Sclerosis Society compiled a l i s t of nineteen women who met the specified c r i t e r i a . The st a f f of the Multiple Sclerosis Society wrote an i n i t i a l l e t t e r of contact which accompanied a l e t t e r from the researcher (see Appendix A) outlining the study and explaining the involvement of participants. Interested women were asked to contact the researcher by telephone. It was also indicated that the researcher would contact each woman ten days after the l e t t e r s were posted. Three people contacted the researcher by phone. One gentleman c a l l e d to say that his wife was i l l with cancer and would not be able to pa r t i c i p a t e . Another woman indicated she was interested in p a r t i c i p a t i n g but did not meet the c r i t e r i a for the study as her husband had recently been i n s t i t u t i o n a l i z e d . The t h i r d woman who contacted the researcher met the c r i t e r i a and was included in the study. The researcher phoned the remaining 16 women. One woman declined to partic i p a t e and two women agreed to part i c i p a t e only i f the researcher needed more participants for the study. In addition, one woman agreed to par t i c i p a t e but would not be available for a second interview due to winter holidays. Two other women did not meet the c r i t e r i a for the study. The researcher was unable to contact three of the women. The remaining seven women met the c r i t e r i a and agreed to pa r t i c i p a t e , for a t o t a l of eight women who participated in t h i s study. Characteristics of Participants The women who participated in t h i s study ranged in age from 38 to 61 years, with a mean age of 47.5 years. The women were married an average of 21 years. Four women were employed outside the home; two full - t i m e and two part-time. The remaining women worked in the home as homemakers. The two women who worked full-time had assistance in the home. Although no women expressed serious f i n a n c i a l concerns, four expressed concern for future f i n a n c i a l a b i l i t i e s . Six of the families had children l i v i n g at home ranging in age from 5-25 years. The diagnosis of multiple s c l e r o s i s was made between one and f i f t e e n years ago. As a di r e c t r e s u l t of the diagnosis and ensuing d i s a b i l i t i e s , a l l but one husband were ,retired. This husband worked 3-4 hours a day and was able to control the hours he worked. Three husbands had re t i r e d within the l a s t eight months. The four remaining husbands r e t i r e d anywhere from five to eleven years ago. One husband was bed-ridden, fiv e were mobile with the use of a wheelchair or three wheel motorized scooter, and two husbands were independently mobile with some balance d i f f i c u l t i e s . Data C o l l e c t i o n Data were coll e c t e d through in-depth interviews ranging in length from one to four hours. Each woman was interviewed twice with approximately s i x to eight weeks between the f i r s t and second interviews. With the exception of the two women who worked ful l - t i m e and who preferred to be interviewed at their place of employment, a l l interviews were conducted in the participants' homes. This provided a comfortable and con f i d e n t i a l location for the interview. As well, i t provided an opportunity to observe environmental and f a m i l i a l factors pertinent to l i v i n g with husbands who have multiple s c l e r o s i s . Although the women were interviewed alone and in confidence, there were opportunities to speak with five of the husbands. The interviews were unstructured and although i n i t i a l questions originated from an interview guide (see Appendix B), subsequent questions evolved out of the accounts provided by the participants. The questions were broadly stated and there was minimal control over the di r e c t i o n the interview took. As well there was no attempt to problem-solve or counsel the participants although t h i s was d i f f i c u l t in the f i r s t interviews due to the researcher's greater f a m i l i a r i t y with the role of c l i n i c i a n rather than researcher. I n i t i a l questions were broadly stated such as " T e l l me what i t i s l i k e l i v i n g with a husband who has multiple s c l e r o s i s " and,"What are the things or people that make your day e a s y / d i f f i c u l t ? " . This type of question allowed each woman to take the interview in any d i r e c t i o n that was meaningful to her. To encourage further exploration of a topic, statements were used such as " T e l l me more about that". It was a constant challenge not to lead the participant by introducing new ideas or questions based on preconceptions about what the experience might be l i k e . It is only when the researcher is able to recognize her biases and put them to the side or bracket them that she is able to see the experience from the individual's perspective (Oiler, 1981). Once the f i r s t interviews were completed and the researcher began to have a sense of the o v e r a l l experience, the second interviews were begun. The second interviews were used to c o l l e c t further data, and to c l a r i f y and validate emerging themes. Thus the second interviews helped to refine and a l t e r early conceptualizations so that the analysis r e f l e c t e d as c l o s e l y as possible the women's perceptions of s o c i a l support while l i v i n g with husbands who have multiple s c l e r o s i s . Each interview was audio-taped and subsequently transcribed to f a c i l i t a t e the analysis. At the end of each interview f i e l d notes were recorded which included observations of the mood, a f f e c t , and behaviors of the participant. The researcher also noted her own behaviors as a way of determining the influence she had on the interview. In addition, the f i e l d notes included any discussion that occurred subsequent to the audio-tape being turned o f f . Valuable Information was often gleaned as the researcher was leaving the women's homes. The observations, f i e l d notes, and transcribed recordings a l l became part of the data that was subsequently analyzed. Data A n a l y s i s In keeping with phenomenology, constant comparative analysis was used in which data c o l l e c t i o n and data analysis occurred concurrently (Omery, 1983). In addition, the women's accounts were analyzed using Giorgi's (1975) framework. Following each interview the audio-tape was transcribed. This process of transcribing fostered greater f a m i l i a r i t y with the data and thus f a c i l i t a t e d data analysis. Following t r a n s c r i p t i o n , the researcher read the tran s c r i p t over while simultaneously l i s t e n i n g to the audio-tape in order to obtain a sense of the whole. The tran s c r i p t was then read slowly and more thoroughly i d e n t i f y i n g meaning units or categories of complete thoughts expressed by the participant. These meaning units were re f l e c t e d upon and themes were i d e n t i f i e d . At t h i s stage the researcher began to take the findings that were in the language of the participant and abstract them into the language of nursing. For example, a segment of data in which a woman spoke about the tasks of caring for her husband was abstracted into the theme of "the role of caregiving". Using these steps in data analysis each interview was examined separately and in r e l a t i o n to the other interviews. The f i e l d notes were also reviewed and compared for recurring themes. Emerging themes were validated and c l a r i f i e d by the participants in subsequent interviews. Thus the themes were subjected to an ongoing process of refinement which permitted the researcher to be true to the li v e d experience as described by the part i c i p a n t s . By moving back and forth between the data and the central themes the researcher began to "synthesize the insights into a descriptive structure of the meaning of that experience" (Omery, 1983, p.58). Eventually an organizing framework emerged that reflected these women's perceptions of support while l i v i n g with and caring for husbands who have multiple s c l e r o s i s . E t h i c a l Considerations Approval for thi s study was obtained from the University of B r i t i s h Columbia Screening Committee for Research Involving Human Subjects. The rights of participants were protected through adhering to the standards set by the Screening Committee for Research. P a r t i c i p a t i o n was voluntary and a written consent (see Appendix C) was obtained from each participant prior to conducting the i n i t i a l interview. Three to four weeks before the i n i t i a l interview participants received a written description of the study along with an explanation of the expectations and rights of the part i c i p a n t s . At the time of, and prior to, each interview the researcher reminded the participants of thei r right to withdraw from the study at any time. They were also reminded of the i r right to decline answering any questions and to request erasure of any portion of the tape without prejudice. Participants were also informed that their choice of whether or not to part i c i p a t e would in no way jeopardize any health care being received by themselves or their family members. Co n f i d e n t i a l i t y was ensured. The names of those who chose to participate were not revealed to anyone, including the r e f e r r i n g agency. The audio-tapes, tra n s c r i p t s and fieldnotes were coded and stored in an unexposed area. Names and id e n t i f y i n g information were removed from a l l written material. Access to the audio-tapes and transcripts were limited to the researcher, and the two members of the thesis committee. Upon completion of a l l written work in r e l a t i o n to th i s study the audio-tapes and computer-disks w i l l be erased and the trans c r i p t s w i l l be destroyed. The right of participants to receive information was also respected. One woman requested and received the name of a resource person to contact for f i n a n c i a l information. Two other women were provided information pamphlets id e n t i f y i n g o f f i c e s , buildings and recreational f a c i l i t i e s that are wheelchair-accessible. Another woman requested information on the impact of parent chronic i l l n e s s on the c h i l d . Another woman, whose husband had been diagnosed one year previously, sought 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 exercise and diet regimens suitable for persons with multiple s c l e r o s i s . This information was provided subsequent to the taped interview. F i n a l l y , each woman who participated in the study, and one man whose wife was unable to pa r t i c i p a t e , requested a summary of the findings which w i l l be provided upon completion of th i s study. S u m m a r y ' This chapter outlined the methodology used in thi s study. The selection of participants, the data c o l l e c t i o n and data analysis were i d e n t i f i e d . As well, the e t h i c a l considerations were discussed. The following chapter w i l l describe the accounts of women's perceptions of support while caring for husbands who have multiple s c l e r o s i s . CHAPTER 4 WIVES' ACCOUNTS Introduction This chapter discusses the findings of t h i s research study. The accounts of eight wives were analyzed to gain an understanding of how these wives perceived s o c i a l support while l i v i n g with and caring for husbands with multiple s c l e r o s i s . Through the analysis of these accounts two central themes emerged. The discussion of these two themes r e f l e c t s the unique s t o r i e s of the eight wives who participated in t h i s study and i s not intended to r e f l e c t women in general. The f i r s t theme explores the caregiving experience as described by these wives. When these women were asked about s o c i a l support they consistently discussed their perceptions of support within the context of their caregiving experience. Therefore, the understanding of s o c i a l support became embedded within the caregiving experience. Within t h i s central theme three sub-themes emerged. These were a) committing to caregiving, b) distancing from caregiving, and c) l i v i n g with ambivalence. These sub-themes provided the basis for the second central theme, the nature of support. The second central theme describes the nature of support as perceived by the wives. Again, three sub-themes emerged in r e l a t i o n to t h i s second theme: a) support for caregiving, b) support for distancing, and c) support for ambivalence. These central themes and sub-themes form the organizing framework for the findings of t h i s study and are i l l u s t r a t e d in Figure 1, on the following page. These themes w i l l now be addressed. The Wives' Caregiving Experience Each wife in t h i s study i d e n t i f i e d a profound commitment to provide care to her husband, i d e n t i f i e d as "committing to caregiving". This commitment yielded many new r e s p o n s i b i l i t i e s which, at times, were perceived to be overwhelming and burdensome re s u l t i n g in a desire for distance from the demands of caregiving, i d e n t i f i e d as "distancing from caregiving". The simultaneous commitment to caregiving and the desire to distance from caregiving catalyzed feelings of g u i l t , i d e n t i f i e d as " l i v i n g with ambivalence". In order to understand the role of caregiving in which s o c i a l support is perceived each of these three sub-themes w i l l now be addressed in greater depth. Committing to Caregiving The wives in t h i s study were deeply committed to providing care to t h e i r husbands. This commitment was r e f l e c t e d in their numerous caregiving r e s p o n s i b i l i t i e s . 49 WIVES' PERCEPTIONS OF SOCIAL SUPPORT WHILE CARING FOR HUSBANDS WITH MULTIPLE SCLEROSIS THE C A R E G I V I N G E X P E R I E N C E COMMITTING to CAREGIVING (enmeshment) A leads to DISTANCING from CAREGIVING leads to leads to recommitment to c a r e g i v i n g LIVING with AMBIVALENCE ( g u i l t ) Y THE NATURE OF SUPPORT SUPPORT f o r CAREGIVING i . Information b. P r a c t i c a l A s s i s t a n c e c. Acknowledgement d. Finances SUPPORT f o r DISTANCING i . S o c i a l A c t i v i t i e s ). P r o f e s s i o n a l S e r v i c e s :. A n t i c i p a t o r y Support SUPPORT fo r AMBIVALENCE a. Being Understood F i g u r e 1. Wives' P e r c e p t i o n s of S o c i a l Support While C a r i n g f o r Husbands with M u l t i p l e S c l e r o s i s The o r i g i n s of t h i s commitment were the wives' commitment to t h e i r marriages, t h e i r l a c k of d i s t i n c t i o n between the r o l e of wife and c a r e g i v e r , and the empathy they f e l t toward t h e i r husbands. These aspects of commitment w i l l now be d i s c u s s e d . The commitment t o c a r e g i v i n g was r e f l e c t e d i n the ways i n which c a r e g i v i n g was provided by these wives. Above and beyond the usual household tasks of laundry, shopping, meal p r e p a r a t i o n , and c l e a n i n g , wives a s s i s t e d t h e i r husbands with t a s k s such as c u t t i n g food i n t o e d i b l e p i e c e s , a s s i s t i n g with walking up and down s t a i r s , t r a n s f e r r i n g to and from wheelchair, d r e s s i n g and undress i n g , and d a i l y hygiene such as i n - d w e l l i n g c a t h e t e r c a r e . These t a s k s r e q u i r e d a gre a t d e a l of time, a t t e n t i o n , and pl a n n i n g on the pa r t of the w i f e . The perv a s i v e n e s s of t h i s c a r e g i v i n g was expressed i n one woman's statement: W.= Wife R.= Researcher W.6 I'd have to be home when he'd come home to help him from the car to the house and help him go to the bathroom and get up again to get changed and dressed and get him back to the k i t c h e n . So t h a t would be an hour before — you never knew when supper was going to be, e v e r y t h i n g j u s t s o r t of stops when he used t o come home, no matter what you were doing you had to stop e v e r y t h i n g you were doing to help him [ c r y i n g ] . In a d d i t i o n : W.3 When [husband] was s i c k I would s l e e p i n t h i s c h a i r by h i s bedside and then i f he moved or anything I was t h e r e , but I would never go to bed f o r maybe a week, maybe two weeks. T h e s e s t a t e m e n t s r e f l e c t t h e commitment w i v e s made t o c a r e g i v i n g a n d t h e r e s u l t a n t demands c a r e g i v i n g p l a c e s on them. I n a d d i t i o n t o t h e d i r e c t p h y s i c a l c a r e m e n t i o n e d a b o v e , a number o f w i v e s assumed r e s p o n s i b i l i t y f o r a r r a n g i n g h e a l t h c a r e a p p o i n t m e n t s a n d a c c o m p a n y i n g t h e i r h u s b a n d s t o s e e t h e f a m i l y d o c t o r , n e u r o l o g i s t , u r o l o g i s t , p h y s i o t h e r a p i s t , a n d a n y o t h e r n e c e s s a r y h e a l t h p e r s o n s . Some w i v e s a l s o a c c o m p a n i e d t h e i r h u s b a n d s t o m u l t i p l e s c l e r o s i s s e l f - h e l p g r o u p s , swimming a c t i v i t i e s a n d o t h e r r e l a t e d a c t i v i t i e s a n d c o n f e r e n c e s . A n o t h e r a s p e c t o f t h e i r c a r e g i v i n g was t h e a n t i c i p a t i o n o f t h e i r h u s b a n d s ' n e e d s . A number o f w i v e s s p o k e o f s l o w l y i n t r o d u c i n g t h e i r h u s b a n d s t o t h e use o f w a l k e r s , w h e e l c h a i r s a n d o t h e r home a c c e s s o r i e s . F o r e x a m p l e : W.6 I'm t h i n k i n g a b o u t c h a n g i n g t h e b a t h r o o m t o p u t l i f t s i n a n d p u t h i g h e r t o i l e t s e a t s i n and s t u f f l i k e t h a t . B u t h e ' s n o t r e a d y [ t o a c c e p t ] t h a t s o I'm s l o w l y i n t r o d u c i n g t h a t t o h i m by s h o w i n g h i m b r o c h u r e s a n d t h i n g s . A n t i c i p a t i n g t h e h u s b a n d ' s n e e d s was n o t l i m i t e d t o t h e i n t r o d u c t i o n o f home a c c e s s o r i e s . A number o f w i v e s s p o k e o f t h e i r r o l e i n p r o t e c t i n g t h e i r h u s b a n d s ' p h y s i c a l a n d p s y c h o l o g i c a l i n t e g r i t y . One woman, i n d i s c u s s i n g t h e d i f f e r e n c e b e t w e e n l i v i n g w i t h h e r h u s b a n d before and subsequent to the diagnosis of multiple s c l e r o s i s , stated: W.2 I'm much more protective, l i k e I have to be careful of his ego and not help when he doesn't want help. But I'm, l i k e I'm more apt to take his arm or to help him up the steps. And maybe he needs i t and maybe he doesn't, but I ' l l be watching things l i k e that. This constant a n t i c i p a t i o n of the husband's needs included safety factors such as clearing pathways for walking or moving the wheelchair, or leaving l i g h t s on in rooms so that the husband wasn't manoeuvering himself in the dark. The outcome of t h i s commitment to caregiving i s that women placed t h e i r husbands' needs before their own. This i s concisely stated in the following: w.6 So you're always thinking ahead, always making sure that everything i s fine for him and then whatever is l e f t over is for me. For the wives, caregiving also extended into the s o c i a l arena. As the husband became more disabled there was less time spent s o c i a l i z i n g with friends. On one hand, i t became burdensome for wives to repeatedly transfer their husbands from wheelchair to car and to pack the wheelchair in the trunk; several wives spoke about how exhausting and time consuming t h i s process was. On the other hand, some husbands, because of the i l l n e s s , became less motivated or able to go out 0 and s o c i a l i z e with th e i r friends. Consequently, women also assumed the role of best friend and primary s o c i a l companion to the i r husbands. As one woman stated: W.4 He r e l i e s s o l e l y on me; I have to e n t e r t a i n him, you know, take him somewhere or t h a t s o r t of t h i n g , and I t h i n k t h a t ' s the hardest p a r t . In a d d i t i o n t o the d i f f i c u l t i e s experienced i n g e t t i n g out of the home f o r s o c i a l a c t i v i t i e s there were fewer f r i e n d s who v i s i t e d the husband i n the home. T h i s p a r t i a l l y r e f l e c t e d changing i n t e r e s t s and a b i l i t i e s but i t a l s o r e f l e c t e d the d i s c o m f o r t some people have with i l l n e s s i t s e l f : W.3 U s u a l l y people won't even come and s i t by the bedside and t a l k , you know, i l l n e s s makes them uncomfortable, you know, and t h a t ' s what happened with a l l the f r i e n d s . In responding to people's d i s c o m f o r t with the i l l n e s s a number of wives extended t h e i r c a r e g i v i n g r e s p o n s i b i l i t i e s t o i n c l u d e p r o t e c t i n g other people so t h a t they were more comfortable with the d i s a b i l i t y . For example: W.2 Our r o l e i s o f t e n to make people comfortable with i t [ m u l t i p l e s c l e r o s i s ] r a t h e r than them s u p p o r t i n g us.... h e l p i n g them to know how to t a l k about i t . T h i s extended r o l e of comforting other people with the i l l n e s s provided these wives with a means of r e c i p r o c a t i n g support and a number of women i d e n t i f i e d t h a t h e l p i n g other people was a source of s e l f - e s t e e m . T h e i r commitment to c a r e g i v i n g l e d the wives to assume many of the tasks and r e s p o n s i b i l i t i e s t h a t had been the husband's p r i o r t o the i l l n e s s . These i n c l u d e d home maintenance, r e p a i r s , and yardwork. As w e l l , due to the emotional and i n t e l l e c t u a l effects of multiple s c l e r o s i s , many husbands no longer shared in family decision-making. Consequently, these wives became the primary decision-makers for the family. As one woman stated: W . 7 And that makes a big difference, You can't have the conversations you used to. Being assertive i s your shoulders now. You can't discuss "Should we do this? Can we afford that? Shall we l e t the kids do t h i s ? " The r e s p o n s i b i l i t y wives f e l t as primary decision-makers was perceived to be a burden. Many of the wives spoke of how d i f f i c u l t i t was in no longer sharing decisions with their husbands, as well as assuming r e s p o n s i b i l i t y for decisions they were previously not involved with, such as f i n a n c i a l matters. The above accounts addressed the commitment to caregiving, r e f l e c t e d in the multiple r e s p o n s i b i l i t i e s the wives w i l l i n g l y assumed as part of t h e i r caregiving. Related to t h i s are the reasons these wives became so committed to providing care at home to their husbands. Due to the usually slow progressive nature of multiple s c l e r o s i s many of the wives assumed caregiving r e s p o n s i b i l i t i e s gradually, adding new tasks onto their e x i s t i n g r e s p o n s i b i l i t i e s as wife and mother. Thus, a number of these wives i d e n t i f i e d that the role of caregiving was simply an extension of t h e i r caring role within the family. As such, caregiving per se was not something they separated as d i f f e r e n t from other r e s p o n s i b i l i t i e s . I t was simply something they d i d . T h i s next account shows the gradual e v o l u t i o n of c a r e g i v i n g : W.4 I t j u s t flows. I mean, you j u s t grow i n t o i t . You don't think about i t . I mean, i t ' s l i k e somebody drowning, you j u s t d i v e i n and save them, you know. You don't t h i n k about i t . Given the o f t e n i n s i d i o u s nature of assuming c a r e g i v i n g r e s p o n s i b i l i t i e s i t becomes understandable t h a t the r o l e of c a r e g i v i n g i s o f t e n not d i f f e r e n t i a t e d from the r o l e of w i f e . As one woman s t a t e d : W.2 I don't see i t as any d i f f e r e n t than [being with] someone who i s w e l l . My r o l e as a wife i s to support my husband, with whatever he i s doing, whatever he's got to de a l with. The M.S. means he dea l s with d i f f e r e n t t h i n g s than he might have to de a l with otherwise. The lac k of d i f f e r e n t i a t i o n between r o l e s was augmented by t h e i r i n t e r p r e t a t i o n of t h e i r marriage vows. When asked about t h e i r commitment to c a r e g i v i n g many of these wives responded by t a l k i n g about the vows " f o r b e t t e r or worse" and " i n s i c k n e s s and h e a l t h " , vows t h a t c a r r i e d a profound commitment. A number of these wives s t a t e d t h e i r marriage vows meant commitment t o whatever events, w i t h i n reason, t r a n s p i r e d d u r i n g the marriage. As a r e s u l t c a r i n g f o r t h e i r husbands became an ex t e n s i o n of t h e i r r o l e of w i f e . As one woman s t a t e d : W.6 I j u s t f e e l t h a t , you know, I guess you take the vow " f o r b e t t e r or worse" and you j u s t go with i t , and i f t h a t ' s what i t i s and t h a t ' s how i t turns out t h a t ' s where you do i t . That's what you're doing. (Pause) And I j u s t expect t h a t out of myself, you know, I r e a l l y don't have too much p a t i e n c e with people that would leave,you know. T h i s commitment to marriage and the lack of d i s t i n c t i o n between r o l e s of wife and c a r e g i v e r f u r t h e r e x p l a i n s the commitment these wives have to p r o v i d i n g care to t h e i r husbands. For the women i n t h i s study the commitment t o c a r e g i v i n g a l s o stemmed from the empathy they f e l t towards t h e i r husbands. A l l of them expressed an understanding of what t h e i r husbands were e x p e r i e n c i n g . T h i s understanding was so pe r v a s i v e t h a t many of these women d e s c r i b e d t h e i r emotions as p a r a l l e l i n g t h e i r husbands'. One woman s u c c i n c t l y r e f l e c t e d t h i s i n sa y i n g W.2 When he's sad I'm sad .. my emotions t r a c k with h i s p r e t t y much; i f he's down then I'm going to t r y to be up, but I'm going to f e e l bad i n s i d e u n t i l he's back up aga i n . The degree of emotional energy expended i n empathizing can be e n v i s i o n e d i n the account of one woman who d e s c r i b e d what i t was l i k e f o r her when her husband independently t r a n s f e r r e d from the couch t o the wheelchair: W.6 While he's t r y i n g to get up you're t r y i n g to get up too. He t r i e s , and he t r i e s and then, you know you're almost going with him, and then f i n a l l y when he gets up, you know, you j u s t r e l a x . T h i s a b i l i t y t o f e e l what t h e i r husbands f e e l was extended to i n c l u d e the husband's symptomology. For example, one woman whose husband was r e c e n t l y diagnosed experienced the d i f f i c u l t y her husband had i n walking. She expressed the f o l l o w i n g : W.l I don't n o t i c e anything d i f f e r e n t a c t u a l l y . . . except h i s walking, and I know he says h i s le g s are a w f u l l y heavy, and he's weaving and I'm weaving, and I [nervous l a u g h t e r ] don't know what I'm going to do. But I have such a c l o s e sympathy with him t h a t I'm f e e l i n g t h a t I, I can f e e l what he's going through. These e x t r a o r d i n a r y d e s c r i p t i o n s of empathy r e f l e c t the wives' p e r c e p t i o n s of t h e i r a b i l i t y to get i n s i d e t h e i r husbands' experiences of m u l t i p l e s c l e r o s i s . These s u b j e c t i v e experiences served to heighten t h e i r commitment to c a r e g i v i n g . By p l a c i n g themselves i n t h e i r husbands' s i t u a t i o n s these women f e l t a s t r o n g e r need to prov i d e the kind of care they e n v i s i o n e d f o r themselves, should they be i n s i m i l a r circumstances. For example, i n as k i n g one woman i f her d e c i s i o n t o keep her bedridden husband a t home was something she d i d f o r her husband or f o r h e r s e l f she answered: W.3 Oh no, i t ' s to make h i s [ l i f e e a s i e r ] 'cause you know, I kept t h i n k i n g , w e l l , I would want somebody to look a f t e r me. I don't want to be i n a p o s i t i o n l i k e t h i s , and t h i s i s what kept me going. That's what kept me going. ... He needed to be home, he wants to be with h i s f a m i l y . Yeah. ... I think the important p a r t was t h a t I wanted t o do i t f o r him because I thought, I don't want anybody to abandon me i f I was s i c k , and t h i s i s what i t was about, you know. For these wives the golden r u l e "do unto others as you would have them do unto you", was a cornerstone i n t h e i r commitment t o c a r e g i v i n g . In c o n c l u d i n g t h i s sub-theme, the wives i n t h i s study were s t r o n g l y committed to c a r i n g f o r t h e i r husbands at home. The lack of d i s t i n c t i o n between t h e i r r o l e s of wife and c a r e g i v e r , t h e i r commitment to marriage, and t h e i r a b i l i t y to empathize so s t r o n g l y , l e d these women to assume m u l t i p l e c a r e g i v i n g r e s p o n s i b i l i t i e s . These c a r e g i v i n g r e s p o n s i b i l i t i e s were both time-consuming and e m o t i o n a l l y d r a i n i n g . A l l t o l d , i t becomes understandable t h a t wives a l s o d e s i r e d some d i s t a n c e from the c a r e g i v i n g experience. As one woman s a i d , "Where am I i n a l l t h i s ? " . The f o l l o w i n g s e c t i o n addresses t h i s d e s i r e f o r d i s t a n c e . D i s t a n c i n g From C a r e g i v i n g For the wives i n t h i s study the d e s i r e to d i s t a n c e v a r i e d a c c o r d i n g to the amount of d a i l y time spent with t h e i r husbands and the degree of involvement i n c a r e g i v i n g a c t i v i t i e s . The more time spent with the husband and the g r e a t e r the involvement with c a r e g i v i n g the g r e a t e r the d e s i r e to d i s t a n c e . Most of the wives i d e n t i f i e d a d e s i r e f o r pers o n a l space t h a t stemmed from the Increased amount of time husbands spent a t home. Due to the e f f e c t s of m u l t i p l e s c l e r o s i s a l l but one husband were r e t i r e d . As w e l l , these husbands were l e s s able to p a r t i c i p a t e i n the kinds of a c t i v i t i e s they once used t o , consequently, many husbands spent much of the i r time at home. For the wives, p a r t i c u l a r l y for those who didn't work f u l l time, t h i s meant a readjustment of their space. No longer was home the wife's semi-exclusive t e r r i t o r y . As husbands became more disabled and spent increasing amounts of time at home, opportunities decreased for the wives to have personal space or private time in their own home. This is re f l e c t e d in the following: W.l He's here a l l day long. We're together constantly. I don't l i k e i t at a l l . I f e e l I need my privacy and he needs h i s . . . . I can hardly cope with him having his i l l n e s s . I don't want my space taken away from me, cause he's sort of coming in a l i t t l e b i t closer. For many of these wives personal space meant having time at home alone. This following account r e f l e c t s t h i s desire: W.8 I had to have him out of the house. Like I couldn't cope on a d a i l y basis. I had to have some free time in the house without him around. For these wives the desire for distance was not only distance from the actual time spent with the husband, but also included distance from the i l l n e s s experience and related caregiving r e s p o n s i b i l i t i e s . Several of the wives became so enmeshed that they needed to remind themselves that i t was the i r husbands' i l l n e s s and not their own. This next account is an example of the degree to which l i v i n g with a chronic i l l n e s s invaded one woman's l i f e : W.5 Illn e s s i s something l i k e a growth. It keeps getting bigger and bigger and i f you l e t i t , i t w i l l take over. It's taken over. But i t won't. It won't consume me. I won't l e t i t ! No matter what! The consuming nature of the i l l n e s s experience provoked a d e s i r e to d i s t a n c e themselves from c a r e g i v i n g . T h i s need was so great t h a t one women d e s c r i b e d the f o l l o w i n g process of "tuning out": R. You s a i d i n the l a s t i n t e r v i e w t h a t both you and your husband are drawn i n t o the i l l n e s s . Is being removed from the i l l n e s s important? W.2 Yes. Yes, 'cause I can tune out. You have t o . I can't change i t eh? But I do f e e l f o r [husband]. I can h a r d l y take i t , but I have t o ; there i s nothing I can do about i t . There i s nothing anyone can do about the d i s e a s e . R. How does t h a t a f f e c t you? W.2 I t makes me worry. I'm a c h r o n i c w o r r i e r . . . But I've learned how to worry without worrying. R. How do you do that ? W.2 I j u s t blank out. I j u s t blank r i g h t out... But then I had to stop t h a t a c t u a l l y , because I was a l i t t l e worried t h a t I would tune out and maybe not come back, i f you know what I mean, l i k e not come back to r e a l i t y a g a i n . T h i s d e s c r i p t i o n r e f l e c t s the extent to which some women experienced the need to d i s t a n c e . Other women expressed t h i s need l e s s i n t e n s e l y yet with j u s t as much c o n v i c t i o n . For example, another woman spoke simply of g e t t i n g away by h e r s e l f : W.4 I get scared sometimes, you know. I sometimes f e e l l i k e I'd l i k e to get away by myself and j u s t t h i n k about myself. You know, you're always s o r t of t h i n k i n g about somebody e l s e . Many of the wives i n t h i s study experienced a d e s i r e to d i s t a n c e themselves d u r i n g p e r i o d s when t h e i r husbands' moods were d i f f i c u l t to manage. S e v e r a l women spoke of " g e t t i n g out of h i s way", or "going out to the garden", or " t a k i n g a walk around the bl o c k " . As one woman s t a t e d : W.l I used to go along with h i s moods...now I f i n d I have given too much and I want to j u s t back away. T h i s d e s i r e f o r d i s t a n c e from the husband's moods was so s t r o n g t h a t some women w i l l i n g l y assumed other r e s p o n s i b i l i t i e s to get away. The next account r e f l e c t s how one wife c r e a t i v e l y managed to d i s t a n c e h e r s e l f from the e f f e c t s of the i l l n e s s by b a b y - s i t t i n g two sm a l l c h i l d r e n i n her home: W.7 I t ' s a l o t more work granted but I've always l i k e d c h i l d r e n . And i t ' s a break. I t ' s not j u s t l i s t e n i n g t o [husband] complain. I t ' s someone to t a l k t o . . . They make me laugh. The process of adapting to and immersing o n e s e l f i n t o the c a r e g i v i n g r o l e l e d to l e s s r e c o g n i t i o n of per s o n a l needs. The wives d i d n ' t always have a c l e a r r e a l i z a t i o n of t h e i r need to d i s t a n c e and awareness o f t e n o c c u r r e d subsequent to an event t h a t r e s u l t e d i n d i s t a n c e from c a r e g i v i n g r e s p o n s i b i l i t i e s . For example, one wife who took some time o f f work due to work-related s t r e s s subsequently d i s c o v e r e d t h a t much of the s t r e s s was r e l a t e d t o her c a r e g i v i n g r o l e : W.2 I was o f f work f o r s t r e s s and I thought i t was a l l work but I found out I was caught i n a wedge at work and I was caught i n a wedge a t home. And g e t t i n g time o f f helped me to see t h a t . . . A l l I needed was j u s t to be alone i n my bedroom and to get everyone to leave me alone. Sometimes t h i s awareness occurred subsequent to r e c e i v i n g r e s p i t e c a r e . For example, one woman i d e n t i f i e d t h a t being alone was the best part of r e s p i t e c a r e : W.3 J u s t being alone, yeah, j u s t being a l o n e ! ... Just to f e e l the freedom.... And I've r e a l i z e d t h a t there i s l i f e a f t e r M.S. because now I'm j u s t g e t t i n g to the p o i n t where I don't have to worry about g e t t i n g home to see what's going on. Another wife d e s c r i b e d the fun she had when she took a h o l i d a y with some of her women f r i e n d s : W.4 T h i s i s when you r e a l l y r e a l i z e how s o r t of hemmed-in you a r e , i s when you go away and you don't have to t h i n k about anybody but y o u r s e l f . In c o n c l u d i n g t h i s sub-theme, the wives i n t h i s study experienced the d e s i r e to d i s t a n c e from the c a r e g i v i n g experience. T h i s i n c l u d e d d i s t a n c e from both the husband and from the i l l n e s s i t s e l f . As husbands spent i n c r e a s i n g amounts of time at home the wives experienced a d e s i r e f o r time away from t h e i r husbands and more time a t home alone f o r themselves. As they became enmeshed i n c a r e g i v i n g , a d e s i r e to d i s t a n c e from the i l l n e s s r e s u l t e d . When faced with simultaneous needs to p rovide care and to d i s t a n c e from c a r e g i v i n g i t i s understandable t h a t these wives experienced ambivalence. L i v i n g With Ambivalence T h i s sub-theme addresses the f e e l i n g s of ambivalence t h a t the wives i n t h i s study underwent. Ambivalence i s d e f i n e d as simultaneous c o n f l i c t i n g f e e l i n g s (Webster, 1979). In t h i s study, the c o n f l i c t i n g f e e l i n g s arose from the wives' commitment to provide care to t h e i r husbands and the simultaneous d e s i r e to d i s t a n c e themselves from c a r e g i v i n g . The outcome of these simultaneous f e e l i n g s was ambivalence, u s u a l l y d e s c r i b e d i n d i r e c t l y by the wives. In f a c t , most women expressed t h e i r ambivalence through d e s c r i b i n g t h e i r g u i l t . Because of t h e i r commitment to c a r e g i v i n g , wives f e l t g u i l t y when they d i s t a n c e d themselves, while at the same time they f e l t j u s t i f i e d i n l e a d i n g a normal a c t i v e l i f e t h a t i n c l u d e d p e r s o n a l o u t s i d e a c t i v i t i e s and i n t e r e s t s . T h i s emotional v o l l e y i n g between what they wanted t o do f o r t h e i r husbands and what they wanted to do f o r themselves c r e a t e d ambivalence. These ambivalent f e e l i n g s were so s t r o n g t h a t one woman, on a r a r e o c c a s i o n of a t t e n d i n g a s o c i a l o u t i n g alone, expressed d i s c o m f o r t t h a t she had been e n j o y i n g h e r s e l f out of the home while a homemaker was c a r i n g f o r her bed-ridden husband. Many of these wives i d e n t i f i e d s i m i l a r f e e l i n g s but were unable to c l e a r l y a r t i c u l a t e t h e i r ambivalence. The f o l l o w i n g account expresses the nebulousness of these f e e l i n g s : W.l I t ' s j u s t a kind of h e l p l e s s n e s s . . . I don't know what i t i s , I can't even name i t . . . K i n d of l i k e a hunger; l i k e something I want to do and j u s t can't do, and i t co u l d be anything I guess, c o u l d be * h e l p i n g [husband] or could be f u r t h e r i n g my education, or whatever. J u s t stymied. Although t h i s woman was unable to l a b e l h e r s e l f as ambivalent, her statement shows her f e e l i n g s of wanting to provide support to her husband while a t the same time wanting to f u l f i l l her own needs f o r p e r s o n a l growth. Although s e v e r a l wives i n t h i s study d i d p a r t i c i p a t i n p e r s o n a l a c t i v i t i e s such as p l a y i n g s p o r t s , shopping, and s o c i a l i z i n g , these women were not comfortable l e a v i n the house when t h e i r husbands were at home. T h i s ambivalence stemmed from c o n t r a s t i n g t h e i r own a b i l i t i e s t o p a r t i c i p a t e i n l e i s u r e a c t i v i t i e s with t h e i r husbands i n a b i l i t i e s to do the same. Consequently, these wives attempted to accomplish t h e i r p e r s o n a l a c t i v i t i e s at times when t h e i r husbands were otherwise occupied. Even so, wives expressed a constant awareness of the amount o time spent away from home and were very c a r e f u l not to extend t h e i r absences longer than necessary. T h i s v i g i l a n c e and r e l a t e d g u i l t are expressed i n the f o l l o w i n g account: W.7 G u i l t i s one of the number one t h i n g s you have to d e a l with...You f e e l g u i l t y no matter what you do I f you go [grocery shopping] and he's not with you, you f e e l g u i l t y . I f you take him with you he waits i n the car and you f e e l g u i l t y . . . T h e doctor was t e l l i n g me I should walk at l e a s t an hour a day. I f I do I f e e l g u i l t y . And I have nothing t f e e l g u i l t y about, and then j u s t the thought that I'm out and he's i n the house (pause,lowered v o i c e ) makes you f e e l g u i l t y . Not o n l y d i d women f e e l g u i l t y when l e a v i n g t h e i r husbands at home alone, they a l s o r e q u i r e d to have " l e g i t i m a t e " reasons such as g r o c e r y shopping or m e d i c a l l y - p r e s c r i b e d e x e r c i s e to do so. Even then, the f e e l i n g s of g u i l t were pres e n t . One of the major reasons women experienced g u i l t i n t a k i n g time away from home was the concern t h a t t h e i r husbands would be a t home alone, doing n o t h i n g . T h i s was unquestionably i d e n t i f i e d by one woman who was contemplating an o v e r n i g h t o u t i n g with f r i e n d s : W.4 Well, you know, I don't l i k e to leave him, f o r in s t a n c e , because he doesn't do an y t h i n g . . . . I j u s t don't l i k e the thought t h a t he'd s i t here a l l by h i m s e l f . I mean, the k i d s w i l l be o f f doing t h e i r t h i n g . They wouldn't s i t with him to e n t e r t a i n him, and he wouldn't phone anybody, so he'd s i t here a l l by himself...And you do f e e l , you know, th a t i f he can't do i t , why should you. And then on the other hand I go: why shouldn't I? C l e a r l y , f o r these wives, the commitment to c a r e g i v i n g i n v o l v e d keeping the husband occupied and e n t e r t a i n e d . When wives were "out" and husbands were home unoccupied, t h i s was f e l t as an a b d i c a t i o n , however b r i e f l y , of the r o l e of wife and c a r e g i v e r and l e d to g u i l t . At the same time these wives r e c o g n i z e d t h e i r need to have some independence and to l i v e as normal a l i f e as p o s s i b l e . T h i s d e s i r e to l i v e a normal and a c t i v e l i f e i n a r e c i p r o c a l r e l a t i o n s h i p l e d one woman to contemplate s e p a r a t i o n . The ambivalence t h i s woman experienced was exacerbated by her husband's i l l n e s s and i s d e s c r i b e d i n the f o l l o w i n g : W.8 I'm not s a y i n g the breakdown of a marriage i s an easy t h i n g , i t ' s got to be d i f f i c u l t f o r everybody, but I see t h i s [ m u l t i p l e s c l e r o s i s ] as as added f a c t o r t h a t makes i t so much harder to cope with... My God, the g u i l t . What's going to happen to [husband] i f I leave him?... I mean, on one hand I see every person being r e s p o n s i b l e f o r t h e i r own s e l f , f o r t h e i r own f e e l i n g s , f o r t h e i r own emotions, f o r t h e i r own s i t u a t i o n . I mean, our l i f e should be what we make i t to be. I mean, we've a l l got c o n t r o l over what we d o — i l l n e s s , f o r example, i s a f a c t o r t h a t you have no c o n t r o l over - so i t ' s very hard f o r me to say [good-by], you're r e s p o n s i b l e f o r you and I'm r e s p o n s i b l e f o r me. But then I t h i n k i f I was married to a h e a l t h y man and the marriage wasn't working, I t h i n k I would le a v e . But f o r [husband] I can't do t h a t . I f i n d i t very d i f f i c u l t to say "be r e s p o n s i b l e f o r y o u r s e l f " . He i s r e s p o n s i b l e f o r h i m s e l f , he's not r e s p o n s i b l e f o r the d i s e a s e which i s a d e f i n i t e f a c t o r i n the marriage r i g h t now. A f i n a l aspect of t h i s sub-theme i s the recommitment to c a r e g i v i n g . The push and p u l l surrounding the wives' d e s i r e t o have a normal a c t i v e l i f e and a t the same time provide support to t h e i r husbands, r e s u l t e d i n f e e l i n g s of ambivalence. When these wives d i d take time f o r t h e i r own a c t i v i t i e s they experienced enormous g u i l t , which they a l l e v i a t e d by recommitting themselves to the c a r e g i v i n g e xperience. Even though some women recognized t h a t i n recommitting themselves they s a c r i f i c e d some of t h e i r own needs, the a l l e v i a t i o n of g u i l t , and t h e i r sense of r e s p o n s i b i l i t y as wife and c a r e g i v e r warranted t h i s s a c r i f i c e . In summary, t h i s s e c t i o n has addressed the c e n t r a l theme of the c a r e g i v i n g e xperience. The wives i n t h i s study made a profound commitment to provide care to t h e i r husbands. As these women became enmeshed i n the c a r e g i v i n g experience they began to d e s i r e d i s t a n c e from c a r e g i v i n g . The simultaneous f e e l i n g s of wanting t o provide care and wanting d i s t a n c e from c a r e g i v i n g r e s u l t e d i n ambivalence. When these women d i d take time away from c a r e g i v i n g they experienced g u i l t and to a l l e v i a t e the g u i l t they recommitted themselves to the c a r e g i v i n g e xperience. These aspects of c a r e g i v i n g p rovide the foundation f o r the f o l l o w i n g c e n t r a l theme: the nature of support. The Nature Of Support T h i s c e n t r a l theme d e s c r i b e s the nature of support as p e r c e i v e d by the wives i n t h i s study. T h i s theme i s b u i l t around the three sub-themes d i s c u s s e d i n the prev i o u s s e c t i o n because these wives' p e r c e p t i o n s of support are grounded i n the context of p r o v i d i n g care to husbands with m u l t i p l e s c l e r o s i s . Three sub-themes are d i s c u s s e d i n t h i s s e c t i o n : a) support f o r c a r e g i v i n g , b) support f o r d i s t a n c i n g and, c) support f o r ambivalence. Support f o r c a r e g i v i n g d i s c u s s e s four types of support these wives found h e l p f u l with t h e i r c a r e g i v i n g r e s p o n s i b i l i t i e s . Support f o r d i s t a n c i n g d i s c u s s e s three types of support t h a t f a c i l i t a t e d i s t a n c i n g from the c a r e g i v i n g e xperience. Support f o r ambivalence d i s c u s s e s one type of support t h a t these women i d e n t i f i e d as important f o r them while l i v i n g with ambivalence. 68 Support For C a r e g i v i n g Each of the wives i n t h i s study i d e n t i f i e d t h a t support f o r c a r e g i v i n g was important. The degree to which they viewed support as necessary v a r i e d a c c o r d i n g to the l e v e l of the husband's dependancy on h i s wife f o r p h y s i c a l and emotional c a r e . T h i s was c o n t i n g e n t on the husband's a b i l i t y to tend to h i s own needs such as a r r a n g i n g appointments, checking out a v a i l a b l e r e s o u r c e s , and a t t e n d i n g to d a i l y a c t i v i t i e s and f u n c t i o n s . Simply s t a t e d , the more dependent the husband was, the more c a r e g i v i n g the wife d i d ; the more c a r e g i v i n g the wife d i d , the more support she thought was necessary. There were four major types of support t h a t emerged from the wives' accounts: i n f o r m a t i o n , p r a c t i c a l a s s i s t a n c e , acknowledgement,and f i n a n c e s . Each of these w i l l now be addressed. A. Information as Support Information about the d i s e a s e , d i s e a s e management, and resources a v a i l a b l e helped wives i n t h e i r r o l e as c a r e g i v e r s . Information served to decrease the u n c e r t a i n t y of d e a l i n g with a c h r o n i c i l l n e s s . I t a l s o a s s i s t e d ' w i v e s i n decision-making f o r d i s e a s e management and, i n a d d i t i o n , provided wives with the knowledge to enact t h e i r r o l e as i n f o r m a t i o n p r o v i d e r s to other people. These women i n i t i a l l y sought i n f o r m a t i o n through the formal h e a l t h care system and expanded t h e i r i n f o r m a t i o n sources t o i n c l u d e a wide v a r i e t y of pers o n a l s o c i a l r e s o u r c e s . These aspects of i n f o r m a t i o n w i l l now be d i s c u s s e d . The d i a g n o s i s of a c h r o n i c i l l n e s s such as m u l t i p l e s c l e r o s i s b r i n g s with i t an u n c e r t a i n f u t u r e . T h i s i s s u c c i n c t l y s t a t e d i n one wife's statement: W.5 They t o l d us a l l there i s to t e l l . There i s nothing e l s e to t e l l us. That's the hardest p a r t , i s t r y i n g to l i v e with not knowing what's going to be tomorrow. Maybe t h i n g s w i l l keep going l i k e t h i s f o r e v e r . They might get a l o t worse. T h i s u n c e r t a i n t y was i n i t i a l l y d e a l t with by g a t h e r i n g i n f o r m a t i o n about the d i s e a s e and what to expect. The m a j o r i t y of the wives r e c e i v e d t h i s i n f o r m a t i o n from the M u l t i p l e S c l e r o s i s S o c i e t y and most found i t very h e l p f u l . Not o n l y d i d t h i s i n f o r m a t i o n serve to educate wives and t h e i r f a m i l i e s about the d i s e a s e , but i t a l s o a s s i s t e d them i n p r e p a r i n g f o r the u n c e r t a i n t i e s of the d i s e a s e process. Having i n f o r m a t i o n about the p o t e n t i a l course of the d i s e a s e provided some sense of p r e d i c t a b i l i t y . T h i s allowed wives to a n t i c i p a t e f u t u r e p o s s i b i l i t i e s and to pl a n f o r p o t e n t i a l c a r e g i v i n g r e s p o n s i b i l i t i e s . In being a b l e to a n t i c i p a t e the p o s s i b l e course of the d i s e a s e the wife gained a sense of c o n t r o l over an u n c e r t a i n f u t u r e . T h i s next account r e f l e c t s the s e c u r i t y i n f o r m a t i o n gave t o one woman: W.6 By pl a n n i n g ahead and being able to a n t i c i p a t e ummm knowing and a c t u a l l y r e a d i n g up on [husband's] i l l n e s s and knowing where he's going t o , I s o r t of f e l t I'm not s u r p r i s e d when t h i n g s happen. Information a l s o provided wives with knowledge about m u l t i p l e s c l e r o s i s t h a t they c o u l d pass on to other f a m i l y members i n t h e i r new r o l e as i n f o r m a t i o n p r o v i d e r s . Information t h a t a s s i s t e d wives i n t h i s r o l e i s r e f l e c t e d i n the f o l l o w i n g : W.5 And we phoned the MS S o c i e t y and they sent out a package t h i s h i g h . And we came home and t o l d the k i d s . The l i t t l e s t guy he c r i e d f o r about two weeks...But i n t h i s package came t h i s book f o r k i d s . We s a t down and read i t with [son] and then he could understand. That sometimes daddy i s not going to be so good and then other times he i s going to be g r e a t . T h i s type of i n f o r m a t i o n not onl y a s s i s t e d wives i n t h e i r c a r e g i v i n g r o l e but a l s o promoted confidence i n t h e i r r o l e as mothers. Once an understanding of the d i s e a s e i t s e l f was gained, many wives sought i n f o r m a t i o n r e g a r d i n g d i s e a s e management. In the e a r l y stages of the d i s e a s e l i t t l e i s r e q u i r e d i n the way of d i s e a s e management and most wives found i t p a r t i c u l a r l y h e l p f u l to be given i n f o r m a t i o n from h e a l t h p r o f e s s i o n a l s t h a t encouraged the f a m i l y to manage the d i s e a s e by c o n t i n u i n g with t h e i r present l i f e s t y l e : W.2 Our s p e c i a l i s t s a i d t o f o r g e t you've got i t . Don't j o i n any s o c i e t i e s , don't read any a r t i c l e s , don't do anything. J u s t operate normally. R. Was that h e l p f u l ? W.2 I thin k i t was, he t o l d [husband] to l i s t e n to h i s 71 body and i f you're t i r e d r e s t , don't push y o u r s e l f . . . So t h a t ' s what we d i d . T h i s i n f o r m a t i o n provided wives with the s e c u r i t y of knowing they could make d e c i s i o n s about f a m i l y a c t i v i t i e s without e x a c e r b a t i n g the progress of the d i s e a s e . At the same time the wives and t h e i r husbands were ab l e t o a d j u s t s l o w l y to the idea of l i v i n g with a c h r o n i c i l l n e s s . As the di s e a s e progressed the most valued type of in f o r m a t i o n was p r a c t i c a l i n f o r m a t i o n . Information about s p e c i f i c a v a i l a b l e r e s o u r c e s was p a r t i c u l a r l y u s e f u l and the more s p e c i f i c the i n f o r m a t i o n the more a c c e s s i b l e the resource became. Regardless of whether the wife or the husband c o l l e c t e d t h i s i n f o r m a t i o n , the more s p e c i f i c the in f o r m a t i o n the more l i k e l y i t f a c i l i t a t e d the c a r e g i v i n g r o l e of the wi f e . The u s e f u l n e s s of p r a c t i c a l i n f o r m a t i o n i s r e f l e c t e d i n the f o l l o w i n g : W.4 They gave p r a c t i c a l i n f o r m a t i o n . They asked him about h i s d r i v i n g and about h i s wheelchairs and t h i s s o r t of t h i n g and what's a v a i l a b l e and to go there and be f i t t e d f o r one, r a t h e r than j u s t down to some medical supply p l a c e and buy one. R. And when he gets the i n f o r m a t i o n , does i t help you? W.4 Well yes, because I know he's d r i v i n g s a f e r f o r in s t a n c e . And the bathroom s i t u a t i o n , the g r i p s and tha t s o r t of t h i n g . You know, we were t o l d to put a c h a i r i n the shower and th a t s o r t of t h i n g . A l o t of t h i n g s t h a t do help day-to-day l i v i n g a l i t t l e e a s i e r . Although a l l women i d e n t i f i e d p r a c t i c a l i n f o r m a t i o n as important, not a l l women were s a t i s f i e d with what they r e c e i v e d . For example, t h i s next account r e f l e c t s the disappointment experienced by one woman when the need f o r in f o r m a t i o n was not met: W.6 I thought I was going t o get a l o t of help when I asked [ h e a l t h p r o f e s s i o n a l ] to come out to the house. But she says I thin k we should get him i n rehab, and you w i l l l e a r n i t a l l t h e r e . . . But I was d i s a p p o i n t e d because when he went t o rehab. I thought I was going to get a l o t of Information as to how to d e a l with MS p a t i e n t s i n the home. They t a l k e d about i t but i t never m a t e r i a l i z e d . I t would appear t h a t h e a l t h p r o f e s s i o n a l s d i d attempt to provide the necessary i n f o r m a t i o n but unless i t was ve r y s p e c i f i c and unl e s s there was follow-up to ensure the wife r e c e i v e d and understood the Information, i t was not p e r c e i v e d as very h e l p f u l . Without t h i s , wives became discouraged and began to seek i n f o r m a t i o n elsewhere: W.6 So t h a t ' s when I r e a l l y decided t h a t I'm going to t r y to l e a r n as much as I can and where I can and j u s t ask people.... I t ' s s u r p r i s i n g how much in f o r m a t i o n you get from j u s t the g e n e r a l p u b l i c j u s t t a l k i n g and as k i n g questions and s t u f f . Most wives i n t h i s study i d e n t i f i e d a wide v a r i e t y of sources f o r i n f o r m a t i o n such as networking with people i n the community, r e a d i n g a r t i c l e s , magazines and books, and l i s t e n i n g to the media. Wives used t h i s i n f o r m a t i o n f o r decision-making In the area of d i s e a s e management. For example, one woman who used t h i s system of networking began implementing d i e t m o d i f i c a t i o n s : W.l I have been watching h i s d i e t , I'm s t a r t i n g to t r y d i f f e r e n t t h i n g s t h a t I am readi n g about and l o o k i n g f o r chemicals and a d d i t i v e s . The above accounts r e f l e c t the value of Information f o r these women i n t h e i r r o l e as c a r e g i v e r s . Information a s s i s t e d wives i n p r e p a r i n g f o r the u n c e r t a i n t i e s of l i v i n g with m u l t i p l e s c l e r o s i s and allowed them to make d e c i s i o n s r e g a r d i n g d i s e a s e management. I t was a l s o fundamental i n p r o v i d i n g wives with the knowledge to be i n f o r m a t i o n g i v e r s to other people. The value placed on having access to i n f o r m a t i o n i s a l s o witnessed i n the l e a r n i n g process whereby these wives, over time, expanded t h e i r sources of i n f o r m a t i o n . B. P r a c t i c a l A s s i s t a n c e as Support P r a c t i c a l a s s i s t a n c e from f a m i l y members and h e a l t h care workers helped the wives i n t h i s study by l e s s e n i n g t h e i r involvement i n c a r e g i v i n g t a s k s . Family members became the f i r s t l i n e of a s s i s t a n c e f o r these wives. Many had sons or daughters l i v i n g at home who o f f e r e d p e r i o d i c a s s i s t a n c e . Some c h i l d r e n o f f e r e d d i r e c t a s s i s t a n c e by h e l p i n g with the d i s h e s , c l e a n i n g , lawn work, and other household chores. Some c h i l d r e n a l s o o f f e r e d a i d to t h e i r f a t h e r s such as a s s i s t i n g with wheelchair t r a n s f e r s , c l o t h i n g changes, and s o c i a l a c t i v i t i e s . These types of a s s i s t a n c e d i r e c t l y supported the wife by r e d u c i n g her involvement i n such t a s k s . The wives c l e a r l y i d e n t i f i e d t h a t support f o r t h e i r husband was support f o r them, and t h a t any a s s i s t a n c e provided to the husband had a d i r e c t e f f e c t on how the wife f e l t supported. As w e l l , by r e c e i v i n g support from t h e i r c h i l d r e n , these wives f e l t l e s s i s o l a t e d i n t h e i r r o l e as c a r e g i v e r : when c a r e g i v i n g r e s p o n s i b i l i t i e s were shared the emotional burden of c a r r y i n g t o t a l r e s p o n s i b i l i t y was t e m p o r a r i l y r e l i e v e d . T h i s next account shows how one daughter provided support by being i n s t r u m e n t a l i n c o n v i n c i n g her f a t h e r to use walking a i d s when t h a t became necessary: W.4 She's the one t h a t got the cane going, and got him to buy the [three wheel s c o o t e r J . I mean, I c o u l d n ' t do i t . She's very good with him. Many of the wives were r e l u c t a n t to depend too much on t h e i r c h i l d r e n f o r a s s i s t a n c e . Some i d e n t i f i e d t h a t they would have a p p r e c i a t e d more a s s i s t a n c e but that t h e i r c h i l d r e n l e d v e r y busy l i v e s and were not always a v a i l a b l e . Some f e l t t h a t r e g u l a r and p r e d i c t a b l e a s s i s t a n c e from c h i l d r e n was an i m p o s i t i o n . S e v e r a l wives i d e n t i f i e d t h a t i t was important that t h e i r c h i l d r e n have normal and happy l i v e s and i t was t h e r e f o r e unreasonable to expect c h i l d r e n to become too i n v o l v e d In a c t i v i t i e s t h a t the wives i d e n t i f i e d as t h e i r r e s p o n s i b i l i t y . T h i s next account r e f l e c t s one woman's concerns about her daughter's a s s i s t a n c e with home a c t i v i t i e s d u r i n g a p e r i o d when the wife was s i c k : W.6 [Daughter] was doing a l l the cooking. She was 12 years o l d and doing the cooking and c l e a n i n g . She was a c t i n g l i k e a mother; i t was r e a l l y tough on her, and . . . ( c r y i n g ] . . . I t ' s not f a i r to expect 75 t h a t of her. P r a c t i c a l a s s i s t a n c e from extended f a m i l y members was a l s o r e c e i v e d and p e r c e i v e d as extremely h e l p f u l . For example, one brother a s s i s t e d the wife with minor home r e p a i r s , another brother and s i s t e r were a v a i l a b l e to s i t with c h i l d r e n when the wife attended medical appointments with her husband. Other f a m i l y members s o c i a l i z e d with the husband p r o v i d i n g time f o r the wife to complete other r e s p o n s i b i l i t i e s . Although t h i s a s s i s t a n c e was p e r c e i v e d as extremely h e l p f u l , the wives were r e l u c t a n t t o request such a s s i s t a n c e too o f t e n . The wives f e l t these f a m i l y members had f a m i l i e s of t h e i r own and they d i d not want to impose unless necessary, or unless the a s s i s t a n c e was o f f e r e d r a t h e r than requested. T h i s concern about r e q u e s t i n g or a c c e p t i n g help was c r e a t i v e l y managed by one wife who arranged a r e c i p r o c a l arrangement with her widowed mother. In r e t u r n f o r l i v i n g i n the home, the mother c o n t r i b u t e d to many household t a s k s . The degree to which t h i s f a c i l i t a t e d the c a r e g i v i n g r o l e of the wife i s unmistakably expressed i n the f o l l o w i n g account: W.2 On top of t r y i n g to do a good job and be a good wife and a h a l f decent mother t h e r e ' s a l l these t h i n g s t h a t you j u s t have to keep going i n the household and Mom r e a l l y steps i n . I've t r i e d to th i n k what would happen i f I d i d n ' t have t h a t because what would happen i s [husband] would do some of them...and he would be s i c k e r I'm sure he would because anything s t r e s s f u l and he winds up worse. For most wives i n t h i s study, a c c e p t i n g help was d i f f i c u l t . They d i d not p e r c e i v e themselves as needy and were very c l e a r t h a t , although t h e i r c a r e g i v i n g r o l e was at times demanding, i t was no d i f f e r e n t than the experience of a s i n g l e parent and they f e l t q u i t e capable of managing t h e i r r e s p o n s i b i l i t i e s . Moreover they viewed these c a r e g i v i n g t a s k s as t h e i r p ersonal r e s p o n s i b i l i t y . Although these wives s t a t e d they would request a s s i s t a n c e when needed, they would do so o n l y i f t h a t a s s i s t a n c e d i d not undermine t h i s image of themselves or t h e i r f a m i l i e s . The f o l l o w i n g account d e p i c t s how one woman pe r c e i v e d p r a c t i c a l a s s i s t a n c e from her mother as p i t y : W.6 I f she'd j u s t phone and come v i s i t and r e l i e v e me of some time...But I wouldn't even t h i n k about her...My parents, they'd j u s t , - i t would be p i t y . I t wouldn't work....They'd f e e l s o r r y . They got the bad mistake of f e e l i n g s o r r y and you can't f e e l s o r r y , you have to understand. Those wives with few f a m i l y resources f o r p r a c t i c a l a s s i s t a n c e u s u a l l y turned to the h e a l t h care system to provide homemaker s e r v i c e . Although they had a n t i c i p a t e d homemaker a s s i s t a n c e to be b e n e f i c i a l , most of the wives were u l t i m a t e l y d i s a p p o i n t e d . S e v e r a l spoke of the amount of red tape they had to encountered before s e r v i c e was p r o v i d e d . Once s e r v i c e was provided, s e v e r a l wives spoke about the d i f f i c u l t y f i n d i n g a q u a l i f i e d homemaker. These wives suggested t h a t homemakers d i d n ' t understand the s p e c i f i c needs of people with m u l t i p l e s c l e r o s i s , were impatient with the husband, and i n t o l e r a n t of h i s speech and movement d i f f i c u l t i e s . I t was commonly p e r c e i v e d that homemakers provided Instrumental care, but without warmth or concern f o r the husband's s o c i a l or emotional needs. One wife i d e n t i f i e d t h a t when the p h y s i c a l care was completed, the homemaker watched t e l e v i s i o n . Those wives who had r e c e i v e d homemaker s e r v i c e a l s o expressed concern about the r u l e s l i m i t i n g the l e v e l of homemaker a s s i s t a n c e . As one woman s t a t e d : W.3 T h i s i s what r e a l l y bugged me about the homemaker s e r v i c e with t h e i r s t r i n g e n t r u l e s . They're [homemaker] o n l y allowed to vacuum once a month, do the laundry once a week, or something l i k e t h i s , c r i k e y t I t i s j u s t awful...And they're not t r a i n e d to look a f t e r bed-ridden people...You have to go through h a l f a dozen before you can f i n d one th a t i s s u i t a b l e . These r u l e s r e s t r i c t the type, amount, and frequency of homeservices p r o v i d e d . T h e r e f o r e , these wives could not count on homemakers to a s s i s t with household and c a r e g i v i n g tasks as needed. In f a c t , the agency and homemaker determine what ta s k s w i l l be undertaken and consequently, some of the wife's c o n t r o l over d e c i s i o n -making i s removed. As a r e s u l t , the wives i n t h i s study d i d not r e c e i v e the more comprehensive a s s i s t a n c e that they i d e n t i f i e d as necessary or h e l p f u l . T h i s lack of needed support i s i d e n t i f i e d i n the f o l l o w i n g account by one woman who expressed much f r u s t r a t i o n and anger towards the h e a l t h care system: W.3 Over the years I've l i t e r a l l y saved the government hundreds of thousands of d o l l a r s by keeping him out of the h o s p i t a l . Too bad lady, t h a t ' s your s t u p i d f a u l t , you c o u l d have put him i n h o s p i t a l . Not o n l y were these wives d i s a p p o i n t e d with the s e r v i c e p r o v i d e d , but some had d i f f i c u l t y o b t a i n i n g any s e r v i c e a t a l l . Given the d i f f i c u l t y some wives had i n a c c e p t i n g support, and t h a t most on l y requested help when t r u l y necessary, to r e f u s e t h i s a s s i s t a n c e served to negate the wife and r e i n f o r c e t h e i r p e r c e p t i o n s t h a t they "should" be able to manage on t h e i r own. One w i f e , who requested homemaker s e r v i c e f o r a s p e c i f i e d time p e r i o d f o l l o w i n g her surgery, was r e f u s e d : W.6 I phoned to see i f I could get someone to look a f t e r my house. And they s a i d "No because you don't q u a l i f y " . I says "What do you mean"? "Well i t ' s your husband t h a t ' s the one t h a t ' s handicapped and i f i t was f o r him we c o u l d do i t but we can't do i t f o r you cause you're not handicapped." R. How d i d you f e e l about t h a t ? W.6 I was r e a l l y upset because what's the p o i n t of having t h a t s e r v i c e i f you can't use i t , e s p e c i a l l y i f you need i t . As the above accounts show, p r a c t i c a l a s s i s t a n c e supports these wives i n t h e i r c a r e g i v i n g r o l e . Family members are the f i r s t l i n e of support f o r p r a c t i c a l a s s i s t a n c e and are p e r c e i v e d as very h e l p f u l by the wives i n t h i s study. Homemakers, although i d e n t i f i e d as p o t e n t i a l l y s u p p o r t i v e , were i n f a c t d i s a p p o i n t i n g f o r most of these wives. F i n a l l y , although these wives i d e n t i f i e d p r a c t i c a l a s s i s t a n c e as u s e f u l , they experienced d i f f i c u l t y i n r e q u e s t i n g and r e c e i v i n g t h i s form of support. C. Acknowledgement as Support Acknowledgement from 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 helped wives i n t h e i r r o l e as c a r e g i v e r s and v a l i d a t e d t h e i r r o l e as competent c a r e g i v e r s . When provi d e d , acknowledgement improved the confidence of these wives i n t h e i r decision-making r e s p o n s i b i l i t i e s . Conversely, when absent, the wives f e l t negated and angry. The f o l l o w i n g accounts address acknowledgement as p e r c e i v e d by these wives. Acknowledgement from f r i e n d s and f a m i l y came i n the form of r e c o g n i t i o n f o r the care they provided to t h e i r husbands. S e v e r a l wives spoke of how some f a m i l y members and f r i e n d s would p e r i o d i c a l l y comment on t h e i r s t r e n g t h of c h a r a c t e r f o r being so committed to t h e i r husbands. R e c o g n i t i o n was a l s o g i v e n f o r how w e l l the husband looked, or how w e l l the wife managed her time, or how w e l l the wife managed as c a r e p r o v i d e r . T h i s acknowledgement as a competent c a r e g i v e r served to enhance these wives' s e l f - e s t e e m and thus f o r t i f i e d them i n performing t h e i r c a r e g i v i n g f u n c t i o n s . As one wife s t a t e d : W.4 Well, l o t s of people say they f e e l I handle [husband] very w e l l , and t h a t he looks w e l l , and we seem to manage a l l r i g h t , you know; I thin k t h a t makes me f e e l good. 80 These wives had a s t r o n g d e s i r e f o r r e c o g n i t i o n . However, as the f o l l o w i n g account r e f l e c t s , many of the wives had few resources f o r such r e c o g n i t i o n : W.6 A l o t of times when you're c o n s t a n t l y making d e c i s i o n s , once i n awhile i t ' s n i c e f o r somebody to say to you, "great p l a n , M., t h a t ' s super". J u s t once i n awhile, and I don't get t h a t . . . Or j u s t coming up to me and j u s t s a y i n g "hey, you're r e a l l y n i c e , " or "you're r e a l l y doing a good j o b " . . . You know, j u s t a l i t t l e boost... Something l i k e t h a t would make me f e e l good f o r a long time, you know, j u s t a l i t t l e compliment here and t h e r e . C l e a r l y , these women d e s i r e d r e c o g n i t i o n , however s m a l l , f o r a job w e l l done. Even r e c o g n i t i o n as a good person was h i g h l y valued by women and as the above account r e f l e c t s , a compliment goes a long way. Not o n l y was acknowledgement from f r i e n d s and f a m i l y important to the wives i n t h i s study, but acknowledgement from h e a l t h care p r o f e s s i o n a l s was a l s o important. When a h e a l t h p r o f e s s i o n a l v a l i d a t e d the i n f o r m a t i o n the wife provided to her husband, the wife was made to f e e l competent. In a d d i t i o n , the wife f e l t t h a t she had an a l l y i n the d e c i s i o n s r e g a r d i n g d i s e a s e management and t h a t she was being g i v e n r e c o g n i t i o n f o r understanding her husband's needs. The f o l l o w i n g account shows how t h i s r e c o g n i t i o n f a c i l i t a t e d one woman's r o l e as c a r e g i v e r : W.2 Oh i t ' s made my l i f e much e a s i e r because i f they [company d o c t o r s ] had been s a y i n g you can s t i l l do more than you're doing, you can s t i l l come i n t o work, he'd have been i n t h e r e . . . f o r one t h i n g he would have gotten s i c k e r and I guess i t would have f a l l e n on me to make him f e e l b e t t e r , but they were sa y i n g the same types of t h i n g s I was. Decision-making was a large part o£ caregiving and when a wife made a c a r e f u l l y thought-out d e c i s i o n based on i n t e r a c t i o n with her husband and on the understanding of her husband's s i t u a t i o n , i t became ve r y important t h a t h e a l t h care p r o f e s s i o n a l s provide r e c o g n i t i o n f o r the w i f e ' s competence. One form of r e c o g n i t i o n was to agree with a p p r o p r i a t e d e c i s i o n s the wife made, and to a p p r e c i a t e t h a t the wife may be i n a b e t t e r p o s i t i o n to make the d e c i s i o n than the h e a l t h p r o f e s s i o n a l . The p o s i t i v e e f f e c t t h i s type of r e c o g n i t i o n has f o r these wives i s seen i n the f o l l o w i n g account: W.6 The other week I phoned [doctor] and I s a i d "I t h i n k I should get [husband] to rehab.", and he goes "Yea, Okay." I mean, no qu e s t i o n s asked, you know, and t h a t f e e l s good because he t r u s t s my judgment and t h a t ' s important to me. In not acknowledging the ideas or suggestions of wives had r e g a r d i n g c a r e , the h e a l t h p r o f e s s i o n a l denied > the w i f e ' s r o l e as c a r e g i v e r . T h i s was d e v a s t a t i n g f o r these women, whose s e l f - i d e n t i t i e s were c l o s e l y a s s o c i a t e d with t h e i r r o l e s as wife and c a r e g i v e r , because i t l e f t them v u l n e r a b l e to q u e s t i o n t h e i r worth. The f o l l o w i n g account d e p i c t s the hurt some wives f e l t when h e a l t h p r o f e s s i o n a l s d i d not acknowledge the wife's concerns r e g a r d i n g d i s e a s e management: W.l She i s a wonderful person and she does give me some good a d v i c e , although I was a l i t t l e hurt the other day, ah, I s a i d t h a t [husband] c o u l d use some p h y s i c a l therapy. She s a i d j u s t to leave him alone, don't push him i n t o t h i n g s j u s t l e t him do what he wants to do, and I was a l i t t l e hurt by 82 t h a t , because no-one pushes [husband]. The r o l e of the w i f e , as d e s c r i b e d by these women, was to care f o r her husband. As the above statement suggests, when t h i s r o l e was not acknowledged the wife's s e l f - e s t e e m s u f f e r e d . In a d d i t i o n to r e q u i r i n g acknowledgment f o r t h e i r r o l e as c a r e g i v e r s and competent decision-makers r e g a r d i n g d i s e a s e management, these wives a l s o sought r e c o g n i t i o n from h e a l t h p r o f e s s i o n a l s f o r t h e i r m u l t i p l e r o l e s as wives and mothers, and r e c o g n i t i o n t h a t the d i s e a s e a f f e c t s everyone i n the f a m i l y , not j u s t the husband. T h i s next account r e f l e c t s the anger experienced by some wives when t h i s r e c o g n i t i o n d i d not e x i s t . W.5 There i s no support up there a t the h o s p i t a l f o r the wife...They don't seem to t h i n k t h a t i f he's i n any kind of p a i n , or i f he's i n any kind of t r o u b l e , they're not o n l y a f f e c t i n g one person, they're a f f e c t i n g the whole family....Poor [husband] and to h e l l with the r e s t of us [ l a u g h s ] . . . . [Husband] was having t e s t s [at the h o s p i t a l ] . We s a i d to [doctor] we have to be back cause were having t h i s s p e c i a l bingo and we're supposed to be g e t t i n g donuts. They s a i d oh, no problem, no problem. Well you know i t ' s 4:30-5:00 and we're s t i l l t h e r e . And then I s t a r t e d g e t t i n g I've got to go, I've got to go. My k i d s are home from s c h o o l f o r two hours and they're s t i l l not l e t t i n g us go. I SAT THERE FOR THREE HOURS with nothing but one MS pamphlet to read.... And they kept s a y i n g "You shouldn't be so anxious, you're u p s e t t i n g you're husband". These accounts of wives i n d i c a t e t h a t acknowledgment from f r i e n d s , f a m i l y , and h e a l t h p r o f e s s i o n a l s was very important i n t h e i r c a r e g i v i n g r o l e . I t i s through t h i s acknowledgment t h a t the women v a l i d a t e d t h e i r r o l e s as c a r e g i v e r s and consequently maintained t h e i r s e l f - e s t e e m . When acknowledgement was not provided these wives f e l t negated and angry. D. Finances as Support Adequate f i n a n c e s a s s i s t e d wives i n c a r e g i v i n g by a f f o r d i n g them the c a p a c i t y to purchase equipment and modify the environment a c c o r d i n g to t h e i r husbands* needs. These needs v a r i e d depending on the degree of dependency of the husband. Adequate equipment and f a c i l i t i e s i n c r e a s e d the husband's m o b i l i t y and consequently modified the wif e ' s c a r e g i v i n g > r e s p o n s i b i l i t i e s . L i v i n g with a c h r o n i c i l l n e s s was c o s t l y f o r the f a m i l i e s i n t h i s study. Not on l y d i d these f a m i l i e s lose the husband's income when he was no longer able to work, but equipment and re s o u r c e s became an e x t r a f i n a n c i a l c o s t . Adequate f i n a n c e s meant wives were ab l e t o purchase both the n e c e s s i t i e s and e x t r a s without compromising i n other areas of t h e i r l i v e s . As the f o l l o w i n g account i n d i c a t e s , adequate f i n a n c e s meant one l e s s t h i n g to worry about: W.6 My husband has a good income which makes me able to do t h i n g s without having to penny p i n c h , and i t ' s e a s i e r on you when you don't have to worry about money... You know, we can j u s t do a l o t of t h i n g s and get a l o t of t h i n g s , which I don't have to second-guess, and I think that r e a l l y helps me out. 84 When a husband became wheelchair bound, h i s a b i l i t y t o move about the house became l i m i t e d . Consequently, these wives became more i n v o l v e d i n a s s i s t i n g t h e i r husbands from room t o room and as a r e s u l t , t h e i r c a r e g i v i n g r e s p o n s i b i l i t i e s i n c r e a s e d . One s o l u t i o n was to purchase a w h e e l c h a i r - a c c e s s i b l e home or make m o d i f i c a t i o n s to the e x i s t i n g home. For most people the co s t of t h i s was e x o r b i t a n t . For those f a m i l i e s i n t h i s study who were able to a f f o r d a w h e e l c h a i r - a c c e s s i b l e home, both the husband and the wife gained g r e a t e r independence. A w h e e l c h a i r - a c c e s s i b l e home not onl y allowed the husband t o move e a s i l y from room to room, i t a l s o allowed the husband to manoeuver h i m s e l f i n the bathroom. As one woman i d e n t i f i e d when asked what t h i n g s made l i f e e a s i e r : W.4 Well, the f a c t t h a t he can get i n t o the bathroom with h i s [three wheel s c o o t e r ] , or t h a t he can get i n t o the shower. I don't have t o put him i n . I mean he j u s t goes. A w h e e l c h a i r - a c c e s s i b l e home not onl y eased the p h y s i c a l aspects of c a r e g i v i n g , but i t a l s o provided these wives the assurance of being able t o maintain t h e i r husband a t home. Thus, adequate f i n a n c e s a l s o prevented or delayed p l a c i n g husbands i n i n s t i t u t i o n s . As one wife i d e n t i f i e d when speaking about the advantages of a w h e e l c h a i r - a c c e s s i b l e home: W.4 I t ' s j u s t changed our l i f e completely. We were i n a two s t o r y house before and i t was, you know, he had to walk up a f l i g h t of s t a i r s i n t o the 85 k i t c h e n and den and l i v i n g room a r e a , and then u p s t a i r s f o r the bedrooms, and i t was j u s t awful....And we j u s t happened upon t h i s house, i t was j u s t g r e a t . I mean, I s a i d to [husband] t h a t I would never put him i n an i n s t i t u t i o n , I mean I j u s t c o u l d n ' t do t h a t . . . I mean, we cou l d have l i v e - i n help i f we had t o , and our bedroom wing i s down t h i s end, and i t would be a p e r f e c t set-up fo r us. The commitment wives made to c a r e g i v i n g and t h e i r r e l u c t a n c e to i n s t i t u t i o n a l i z e t h e i r husbands placed a burden on them when faced with the dilemna of no longer being able to meet the demands of c a r e g i v i n g . As the above account shows, adequate f i n a n c e s provided the s e c u r i t y of m a i n t a i n i n g husbands a t home. Adequate f i n a n c e s a l s o provided the l u x u r y of purchasing equipment t h a t i n c r e a s e d the husband's independence, and as wives so c o n s i s t e n t l y s t a t e d , " t h i n g s t h a t make my husband's l i f e e a s i e r , make my l i f e e a s i e r " . For example, one p i e c e of equipment t h a t was u s e f u l was a remote phone: W.4 I bought a remote phone so t h a t i f he was out i n the garden or something he doesn't have to run to the phone, i t ' s e a s i e r f o r him. And i t ' s e a s i e r f o r me because I don't have to run i n and out to the garden and do whatever, you know. Adequate f i n a n c e s f o r equipment not o n l y decreased the time spent i n c a r e g i v i n g t a s k s , i t enabled the purchase of more s o p h i s t i c a t e d equipment which a l l e v i a t e d many of the d i f f i c u l t i e s i n v o l v e d with l i f t i n g . A l i g h t w e i g h t wheelchair i s e a s i e r to l i f t and t h e r e f o r e l e s s of a p h y s i c a l s t r a i n on the wi f e . The p o t e n t i a l outcome i s th a t more a c t i v i t i e s out of the home are l i k e l y t o be attended. T h i s i s c l e a r l y i d e n t i f i e d i n the f o l l o w i n g account: W.4 I f e e l i f he buys some more equipment we can do a •lot more. L i k e a l i g h t w e i g h t w heelchair. You know, we have a heavy wheelchair t h a t came with the house. I thin k i f you have more a c c e s s i b l e equipment then you can do more. R. Gives you more m o b i l i t y ? W.4 Oh yea. I mean i t k i l l s me c a r r y i n g and packing a l l t h a t junk around, you know... I t was my b i r t h d a y i n June so [husband] s a i d "What would you l i k e ? " and I s a i d "A l i g h t w e i g h t w h e e l c h a i r " [ l a u g h ] . Another piece of equipment t h a t a s s i s t e d wives with c a r e g i v i n g tasks was an e l e c t r i c a l u n i t c a l l e d a TOSC u n i t . T h i s i s an e l e c t r o n i c system t h a t a l l o w s a person with a d i s a b i l i t y to c o n t r o l h i s or her environment by t u r n i n g e l e c t r i c a l a p p l i a n c e s on and o f f . In t a l k i n g about support, the f o l l o w i n g woman i d e n t i f i e d the TOSC u n i t as p a r t i c u l a r l y u s e f u l : W.3 I d i d n ' t r e a l l y r e a l i z e how tough i t was, but i t r e a l l y i s though when you've got no back-up at a l l . Kinsmen were a great h e l p . They bought the TOSC u n i t . I t w i l l enable him to t u r n on the TV or the r a d i o , or change channels, or t u r n on the l i g h t s and t h a t kind of t h i n g . When f a m i l y f i n a n c e s d i d not adequately cover both f a m i l y l i v i n g c o s t s and the purchase of equipment, a grea t d e a l of t e n s i o n was c r e a t e d f o r wives. Not onl y was there t e n s i o n about a v a i l a b l e funds, there was the added r e s p o n s i b i l i t y of having to decide whether the money would be spent on f a m i l y needs or h e l p f u l equipment. 87 N e i t h e r choice was s a t i s f a c t o r y , she was caught In a dilemma: W.7 Everybody i s t a l k i n g about what you have to do f o r the person who has MS. You've got to i n s t a l l an e l e v a t o r . I t w i l l c o s t you $10,000 and you w i l l l o s e your son's bedroom. And there i s no-one who w i l l say "Can you a f f o r d t h i s ? " . . . Although we had enough money we had put that money away f o r the k i d s e d u c a t i o n . And you have to weigh the t h i n g s . In some ways I th i n k i t ' s worse f o r the mate of the person who has MS cause...[husband] never once s a i d how are you making out with money, never once, and umm you p a n i c . The above accounts r e f l e c t the importance of adequate f i n a n c e s f o r wives i n t h e i r c a r e g i v i n g r o l e . Adequate f i n a n c e s to purchase w h e e l c h a i r - a c c e s s i b l e homes and equipment i n c r e a s e d the husband's independence and subsequently lessened the number of d a i l y tasks i n which the wife was i n v o l v e d . Adequate equipment had the p o t e n t i a l to i n c r e a s e the number of o u t s i d e a c t i v i t i e s f o r both husband and w i f e , and decrease the amount of heavy l i f t i n g . F i n a l l y , adequate f i n a n c e s r e l e a s e d wives from the untenable p o s i t i o n of choosing between f a m i l y needs and husband needs. T h i s sub-theme of support f o r c a r e g i v i n g has addressed four types of c a r e g i v i n g support t h a t the wives i n t h i s study found u s e f u l : i n f o r m a t i o n , p r a c t i c a l a s s i s t a n c e , acknowledgement, and f i n a n c e s . The f o l l o w i n g sub-theme w i l l , a d d r e s s support f o r d i s t a n c i n g . 88 Support For D i s t a n c i n g From C a r e g i v i n g A l l of the wives i n t h i s study i d e n t i f i e d t h a t support f o r d i s t a n c i n g from the c a r e g i v i n g experience was h e l p f u l . The need f o r support f o r d i s t a n c i n g v a r i e d widely among these wives and depended upon the degree to which each wife was enmeshed i n the c a r e g i v i n g e x perience. Wives whose husbands were more independent and s e l f - s u f f i c i e n t were l e s s embroiled i n c a r e g i v i n g and consequently r e q u i r e d l e s s support f o r d i s t a n c i n g . Conversely, wives whose husbands were more dependent upon them were more enmeshed i n c a r e g i v i n g and consequently d e s i r e d more support f o r d i s t a n c i n g . The accounts of these wives r e v e a l e d three major types of support f o r d i s t a n c i n g : s o c i a l a c t i v i t i e s , p r o f e s s i o n a l s e r v i c e s , a n t i c i p a t o r y support. Each of these w i l l now be addressed. A. S o c i a l A c t i v i t i e s as Support S o c i a l a c t i v i t i e s f o r the husband and the wife, both i n d i v i d u a l l y and as a couple, provided o p p o r t u n i t i e s f o r the wives to d i s t a n c e themselves from the c a r e g i v i n g e x p e r i e n c e . S o c i a l a c t i v i t i e s f o r the husband, such as s o c i a l i z i n g with f r i e n d s , p a r t i c i p a t i n g i n b r i d g e or poker, or a t t e n d i n g s p o r t i n g f u n c t i o n s became a major c o n s i d e r a t i o n f o r the wives i n t h i s study. Due to the e f f e c t s of the d i s e a s e many husbands were l e s s motivated or able to p a r t i c i p a t e i n t h e i r usual a c t i v i t i e s . Consequently, these wives i n v e s t e d tremendous energy i n t o encouraging t h e i r husbands' involvement i n a c t i v i t i e s and s o c i a l events. The e f f e c t of the husband's i n a c t i v i t y on the wife i s r e f l e c t e d i n the f o l l o w i n g account: W.8 I t j u s t depresses me, day i n and day out [husband] l y i n g down watching TV, l i s t e n i n g to tapes, so I have to push him to do t h i n g s . T h e r e f o r e , when husbands were i n a c t i v e , not o n l y d i d the wives spend more time a t home with t h e i r husbands, but they i n v e s t e d tremendous emotional energy i n t h e i r concern f o r him. When husbands were i n v o l v e d i n a c t i v i t i e s t h a t they enjoyed, the wives d i d not worry as much about the husband's happiness. As one wife s t a t e d , " i t takes a load o f f " . T h i s i n i t s e l f allowed wives to p s y c h o l o g i c a l l y d i s t a n c e from some of the worry a s s o c i a t e d with c a r e g i v i n g . In t u r n , wives gained more freedom to become i n v o l v e d i n t h e i r own p e r s o n a l a c t i v i t i e s . T h i s i s w e l l i l l u s t r a t e d i n the f o l l o w i n g : W.7 I l i k e i t when he's going somewhere, because then I don't worry i f I go somewhere. O p p o r t u n i t i e s f o r such separateness were important f o r these wives. Not o n l y d i d i t a l l o w them to d i s t a n c e from the husband but i t a l s o helped to promote a normal f a m i l y e x i s t e n c e which subsequently r e s u l t e d i n g r e a t e r d i s t a n c e from the c a r e g i v i n g experience. R. So the more i n v o l v e d [husband] i s the more in v o l v e d you can be? W.6 Yea. And then we can come back together and compare each o t h e r s ' worlds i n s t e a d of j u s t being here d i s c u s s i n g the same l i t t l e world, you know. Many of these wives came to depend on f r i e n d s and f a m i l y members to i n v o l v e t h e i r husbands i n s o c i a l a c t i v i t i e s . However, most wives found t h a t people were uncomfortable with i l l n e s s and, over time, fewer and fewer f r i e n d s v i s i t e d or engaged the husband i n o u t s i d e a c t i v i t e s . Although c l o s e f r i e n d s remained i n c o n t a c t there were s t i l l fewer o p p o r t u n i t i e s f o r s o c i a l c o n t a c t . As one woman s t a t e d : W.4 I wish they would drop i n more and come and v i s i t j u s t f o r h a l f an hour or something, and t h a t , I t h i n k , i s a very g r e a t need f o r people who are d i s a b l e d . You r e a l l y n o t i c e t h a t . S o c i a l a c t i v i t i e s f o r the wives provided o p p o r t u n i t i e s to d i s t a n c e from the c a r e g i v i n g experience Although many wives i n t h i s study i d e n t i f i e d they had l i t t l e time or o p p o r t u n i t y f o r t h e i r own s o c i a l a c t i v i t i e s , there was a high value placed on f r i e n d s h i p s and s o c i a l exchange. Because many of these wives had competing demands of employment, f a m i l y and c a r e g i v i n g , o p p o r t u n i t i e s f o r p e r s o n a l a c t i v i t i e s p rovided a tremendous r e l e a s e . As one wife s t a t e d about her f r i e n d s W.8 I t r e a s u r e them... They e n r i c h my l i f e , and I r e a l l y wonder, w e l l l i k e any one would wonder, what would I do without some very good f r i e n d s . You know, to enjoy s k i i n g with, to enjoy a good laugh, to enjoy a good p a r t y . 91 Many wives used these s o c i a l o p p o r t u n i t i e s f o r pleas u r e and purposely chose not to d i s c u s s t h e i r problems with t h e i r f r i e n d s . For example: W.6 I don't go there [to the lounge with f r i e n d s ] t a l k i n g about my problems cause I don't want to t a l k about my problems anyway. I want to get away from i t a l l . For some women these s o c i a l events provided an o p p o r t u n i t y to get out of the house and be p h y s i c a l l y removed from the c a r e g i v i n g environment. As w e l l , some women found comfort i n j u s t having someone to t a l k t o . T a l k i n g about problems was l e g i t i m a t e when i t was r e c i p r o c a l . As p r e v i o u s l y s t a t e d , the wives d i d not want to be seen as needy and thus d i s c u s s i n g problems was more ac c e p t a b l e when r e c i p r o c a t e d . S o c i a l a c t i v i t y as a way of g e t t i n g out of the house and having a shared c o n v e r s a t i o n i s r e f l e c t e d i n the f o l l o w i n g : W.7 He'd t e l l me h i s t r o u b l e s . . . and I t o l d him my t r o u b l e s and I thin k i t d i d me a l o t of good. Just g e t t i n g out of the house. G e t t i n g a b i t of e x e r c i s e . And having someone to t a l k t o . For the wives i n t h i s study, c o u p l e - o r i e n t e d s o c i a l a c t i v i t i e s served to augment a normal e x i s t e n c e . T h i s , i n t u r n , allowed wives to t e m p o r a r i l y d i s t a n c e from the c a r e g i v i n g e xperience. For these wives c o u p l e - a c t i v i t i e s p r i m a r i l y centered around dinner engagements e i t h e r i n the home or a t the home of f r i e n d s . In e i t h e r case, the wife viewed the a c t i v i t y as a break from c a r e g i v i n g . As one woman s t a t e d : 92 W.7 Well I enjoy company. We do have a l o t of company. Perhaps I enjoy i t cause i t i s a break. Dinner engagements o u t s i d e the home r e q u i r e d more energy on the p a r t of the w i f e , due to the lac k of o u t s i d e w h e e l c h a i r - a c c e s s i b l e f a c i l i t i e s . Even so, these events were looked forward to as an o p p o r t u n i t y f o r s o c i a l c o n t a c t with people other than the husband. T h i s i s r e f l e c t e d i n the f o l l o w i n g account: W.6 I have to ask the people to make sure they're there t o help c a r r y the wheelchair up the s t a i r s and once we're there I have to help him i n the bathroom cause the bathrooms are never equipped p r o p e r l y . . .'So you have to go away from the company and s t u f f l i k e t h a t , but i t doesn't bother me one b i t . I'm j u s t so g l a d t h a t I'm out you know with other people i n s t e a d of j u s t being with him a l l the time. Cause I t h i n k you j u s t have to get out. During these c o u p l e - o r i e n t e d a c t i v i t i e s some wives found f u r t h e r support f o r d i s t a n c i n g from f r i e n d s who assumed some of the w i f e ' s t y p i c a l c a r e g i v i n g t a s k s . T h i s support allowed wives to a t t e n d c o u p l e - o r i e n t e d s o c i a l f u n c t i o n s while a t the same time d i s t a n c i n g from both the husband and c a r e g i v i n g t a s k s . T h i s next account shows how one wife was provided t h i s support: W.8 We went out f o r dinner with 16 other people... and because I get out so seldom I don't l i k e to s i t next to [husband] because I've got to cut up h i s meat and read the menu to him. But I need a br e a t h e r , and enough of our f r i e n d s know what needs to be done, so t h e y ' l l s i t next to him and I ' l l s i t somewhere e l s e . These accounts show how s o c i a l a c t i v i t i e s f o r the husband, the wife, and the couple, provided o p p o r t u n i t i e s f o r the wives i n t h i s study to d i s t a n c e from the c a r e g i v i n g experience. A3 w e l l , the wives p e r c e i v e d s o c i a l r e l a t i o n s h i p s as more s u p p o r t i v e when f r i e n d s d i d not p e r c e i v e the wives as needy and were w i l l i n g to share on equal terms. B. P r o f e s s i o n a l S e r v i c e s as Support Although a number of wives (and husbands) i n t h i s study d i d not u t i l i z e p r o f e s s i o n a l s e r v i c e s , such as day programs and r e s p i t e c a r e , those t h a t d i d were provided o p p o r t u n i t i e s to d i s t a n c e themselves from the c a r e g i v i n g experience. For wives who were employed o u t s i d e the home i t became p a r t i c u l a r l y imperative t h a t t h e i r husbands were adequately cared f o r and i n v o l v e d with t h e i r own a c t i v i t i e s . When husbands remained a t home without adequate home support i t c r e a t e d more s t r e s s f o r the wif e . Rather than c o n c e n t r a t i n g on her r e s p o n s i b i l i t i e s at work, the wife worried about her husband's s a f e t y . The f o l l o w i n g account i n d i c a t e s the s t r e s s t h i s s i t u a t i o n c r e a t e d f o r one woman: W.6 I work and I worry a t work cause he f a l l s and he can't pick h i m s e l f up...so even with the two days I work I phone now and i f there's no answer I think Oh God! I wonder i f he has f a l l e n . P r o f e s s i o n a l s e r v i c e s such as day programs provided a s o l u t i o n to t h i s problem. When husbands were s a t i s f a c t o r i l y i n v o l v e d i n day programs the wife was able to be more f u l l y i n v o l v e d with her other a c t i v i t i e s , such as work, without worrying about her husband. T h i s s o l u t i o n o f f e r e d both the husband and the wife t h e i r own a c t i v i t i e s , p r o v i d i n g d i s t a n c e from c a r e g i v i n g . T h i s next account r e l a t e s how one husband's involvement with a day program c r e a t e d a comfortable d i s t a n c e d u r i n g the day and subsequently provided them with t o p i c s of c o n v e r s a t i o n at n i g h t : W.2 We're r e a l l y f o r t u n a t e with [husband's] involvement with Pearson H o s p i t a l . . . He has two f r e e days where he can swim or whatever and three scheduled days where he has to work, and he t r e a t s i t l i k e work. Then when he comes home we are more apt to t a l k about what he has done and the people he has seen. And i t ' s great I don't r e a l l y want to t a l k about my work when I get home. Although day programs are s e t up to s p e c i f i c a l l y p r o vide support to the husband, t h i s support has a d i r e c t e f f e c t on the w i f e . In commenting on how h e l p f u l the day program has been t h i s same wife s t a t e d : W.2 I'd say a l l the support t h i n g s t h a t I need the most are the t h i n g s t h a t [husband] gets because as long as h i s l i f e i s going smoothly so i s mine. Respit e care was a l s o an o p t i o n f o r these wives to d i s t a n c e from the c a r e g i v i n g experience. When the husbands spent one or two weeks i n a r e s p i t e care f a c i l i t y these wives were provided a complete break from the c a r e g i v i n g e x p e r i e n c e . Some wives i n d i c a t e d t h a t t h e i r husbands a l s o b e n e f i t t e d from t h i s break and thus, r e s p i t e care served to provide a break f o r both the husband and the w i f e . T h i s i s r e f l e c t e d by one w i f e : W.6 I t ' s an o p t i o n where he can get away from the f a m i l y l i f e , and get away from us, because we're together so much t h a t you can r e a l l y get on each 95 other's nerves a f t e r awhile...You know, s o r t or give the f a m i l y a break but give h i m s e l f a break a l s o . However, a r r a n g i n g f o r r e s p i t e care was not always easy. S e v e r a l wives spoke of the "red tape and bureaucracy", and the energy c o s t seemed a t times, to exceed the b e n e f i t s . The f o l l o w i n g account r e f l e c t s the dissapointment, of one woman, with the arrangements f o r r e s p i t e c a r e , a f t e r two and a h a l f years without a break from c a r e g i v i n g : W.7 And then a week or two before he was supposed to go they phoned and s a i d "Oh he can't go i n , they're not prepared to give him as much care as he r e q u i r e s " . Which was p r e t t y awful. They knew t h i s i n the beginning, and somehow a l l the wires got c r o s s e d . So he was r e a l l y d i s a p p o i n t e d and so was I. And then i t was too l a t e to arrange f o r anything e l s e . These accounts show how p r o f e s s i o n a l s e r v i c e s provided support f o r d i s t a n c i n g to the wives i n t h i s study. Day programs a l l o w wives to be more i n v o l v e d i n t h e i r own a c t i v i t i e s and r e s p i t e c a r e , i f a c c e s s i b l e , p r o v i d e d a complete break from c a r e g i v i n g f o r a s p e c i f i e d time p e r i o d . However, unl e s s the support s a t i s f i e d the wife's p e r c e p t i o n of q u a l i t y c a r e , the wife was u n l i k e l y to view the s e r v i c e s as s u p p o r t i v e , and l e s s l i k e l y to use them. C. A n t i c i p a t o r y Support The wives i n t h i s study r e p o r t e d t h a t the a n t i c i p a t i o n of support, f o r f u t u r e needs, was i n i t s e l f a powerful form of support f o r the present. The a n t i c i p a t i o n of a v a i l a b l e a s s i s t a n c e , to c a l l upon when needed, allowed these wives to p s y c h o l o g i c a l l y d i s t a n c e from the burden of t o t a l r e s p o n s i b i l i t y f o r c a r e g i v i n g . Thus, the very knowing t h a t support would be a v a i l a b l e i f the need arose became an important form of support f o r these wives. The value of what co u l d be c a l l e d " a n t i c i p a t o r y support", f o r these wives, stems from knowing they are the primary p r o v i d e r s of care to t h e i r husbands. T h i s knowledge l e f t wives f e e l i n g they "could not get run down", "could not get s i c k " because otherwise, "who would look a f t e r my husband?". As w e l l , some wives a n t i c i p a t e d t h a t a time might come when the husband's d i s a b i l i t y would extend beyond the wife ' s c a p a b i l i t y to provide c a r e . As one wife s t a t e d : W.l There's always the thought t h a t maybe tomorrow [pause] and how do I l i f t a 200 pound man; th a t thought has occurred to me, and I don't t h i n k about i t a l l the time, but I have thought about i t and worried about i t . T h i s f e e l i n g of t o t a l r e s p o n s i b i l i t y was unquestionably p e r c e i v e d as a burden and a t times, an overwhelming one. They i d e n t i f i e d t h a t the knowledge there was someone they c o u l d count on made t h e i r l i v e s much e a s i e r . To be r e l i e v e d from t h i s c a r e g i v i n g concern, t h i s next woman had her husband assessed f o r homemaker s e r v i c e : W.4 I've had [husband] assessed and so t h a t out there there i s help i f I want i t . I thi n k t h a t makes my l i f e f e e l a l o t e a s i e r , you know. I f he does get s i c k I know where I can phone. T h i s knowledge of having someone to count on allowed t h i s woman to p s y c h o l o g i c a l l y d i s t a n c e h e r s e l f from the c a r e g i v i n g e x p e r i e n c e . T h i s woman went on to i d e n t i f y t h a t i t was not h e a l t h y to thin k about increased c a r e g i v i n g tasks i n the f u t u r e , but th a t i t was very h e a l t h y t o ensure a s s i s t a n c e would be a v a i l a b l e f o r fu t u r e needs: W.4 I don't want t o th i n k about [the f u t u r e ] . I ' l l c r o s s t h a t bridge when I have t o . But the r e ' s no way I'm going t o s t a r t t h i n k i n g about i t now. R. So t h a t ' s not a h e a l t h y t h i n g to do? W.4 No. No. I don't t h i n k i t i s , because i t upsets me to th i n k I have to do a l l t h a t . I know th a t there i s help out there i f I need i t , and t h a t ' s a l l I worry about. The above account d r a m a t i c a l l y shows the p s y c h o l o g i c a l value t h a t a n t i c i p a t o r y a s s i s t a n c e represented f o r these women. I t allowed them to d i s t a n c e from the worries of c a r e g i v i n g and reduced t h e i r a n x i e t i e s about the f u t u r e . Many of these wives a l s o i d e n t i f i e d t h e i r f a m i l i e s as p r o v i d i n g a n t i c i p a t o r y support. Even though these wives i d e n t i f i e d t h a t " i t would have to be something r e a l l y bad" to c a l l on f a m i l y members, j u s t the knowledge t h a t f a m i l y would be a v a i l a b l e was i n i t s e l f support f o r d i s t a n c i n g . As one woman s t a t e d : W.5 I don't even know i f I've c a l l e d on them t h a t o f t e n , but knowing I can whenever R. And what does t h a t do f o r you? W.5 I t h i n k i t makes me s t r o n g e r . I f you had nobody, some of the t h i n g s , I don't know what I'd do. These accounts show how, f o r the wives i n t h i s study, the a n t i c i p a t i o n of support became support i n i t s e l f . Knowing they c o u l d count on f a m i l y and h e a l t h workers allowed these women to p s y c h o l o g i c a l l y d i s t a n c e from some of the burdens of c a r e g i v i n g . T h i s form of support became p a r t i c u l a r i l y v a l u a b l e i n l i g h t of the concerns wives had i n a c t u a l l y r e c e i v i n g support. A n t i c i p a t o r y support was always viewed p o s i t i v e l y , and provided access to support without r e q u i r i n g tremendous input from o t h e r s . T h i s sub-theme has d e a l t with three types of support these wives found h e l p f u l i n d i s t a n c i n g from c a r e g i v i n g : s o c i a l a c t i v i t i e s , p r o f e s s i o n a l s e r v i c e s , and a n t i c i p a t o r y a s s i s t a n c e . T h i s next sub-theme addresses support f o r l i v i n g with ambivalence. Support f o r Ambivalence T h i s sub-theme addresses the type of support t h a t a s s i s t e d the wives i n t h i s study i n l i v i n g with ambivalence. T h i s support i s i d e n t i f i e d as "being understood", a predominate t o p i c of these wives. "Understanding" as support f o r ambivalence meant t h a t others understood the c o n f l i c t i n g f e e l i n g s surrounding the ambivalence. That i s , when these wives f e l t t h a t others understood t h e i r commitment to c a r e g i v i n g and the simultaneous d e s i r e to d i s t a n c e from c a r e g i v i n g they f e l t supported i n l i v i n g with the ambivalence. "Being understood" as a form of support w i l l now be addressed. Being Understood as Support A l l the wives i n t h i s study i d e n t i f i e d t h a t "being understood" was a key f e a t u r e of support. In f a c t , these wives d e f i n e d support as understanding. As one woman s t a t e d when asked what support meant: W.l I t ' s j u s t having someone that understands what you're s a y i n g and - ah - what you're f e e l i n g . For these wives being understood meant t h a t other people were aware of the burden t h a t accompanied c a r e g i v i n g and the d e s i r e f o r p e r i o d i c d i s t a n c e from the c a r e g i v i n g experience. T h i s understanding was p a r t i c u l a r l y important because the wives were so accustomed to f o c u s i n g t h e i r a t t e n t i o n on t h e i r husbands' needs r a t h e r than t h e i r own. Many of these wives p e r c e i v e d t h a t because they were h e a l t h y and t h e i r husbands had a d i s a b i l i t y , t h e i r husbands' needs were more important than t h e i r own. The r e f o r e , i t became very d i f f i c u l t f o r wives to acknowledge t h e i r p e r s o n a l f e e l i n g s p a r t i c u l a r l y as they r e l a t e d t o the ambivalence of c a r e g i v i n g . T h i s i s r e f l e c t e d i n the f o l l o w i n g account: 100 R. Do you mean th a t your husband's needs are more important than your needs r i g h t now? W.6 Right now, yes. Yes. Well I'm a h e a l t h y , m e d i c a l l y s t r o n g person. I can overcome my needs...So th e r e ' s always a way... So you can work y o u r s e l f out of t h a t , but [husband] can't He's handicapped. He's p h y s i c a l l y handicapped. When wives f e l t t h a t someone understood t h e i r predicament they were more able to t a l k f r e e l y about t h e i r s i t u a t i o n . They f e l t t h a t there was someone who was w i l l i n g to l i s t e n to them, someone w i l l i n g to recognize t h e i r f e e l i n g s without judgement or condescension. In s h o r t , being understood v a l i d a t e d these women as competent i n d i v i d u a l s who at the same time experienced ambivalence. T h i s next account shows the value placed on understanding: W.8 L a t e l y I've been honest with what my l i f e has been l i k e , and i t has opened up t h i s whole area t h a t at l e a s t my mom and I t a l k about. J u s t being able to l e t i t r e a l l y a l l hang out and j u s t the f r u s t r a t i o n I f e e l . And knowing t h a t my mother i s l i s t e n i n g , my mother's l i s t e n i n g and she's understanding. Conversely, not being understood r e s u l t e d i n more g u i l t f o r these women. The next account r e f l e c t s how one wife d e s c r i b e d her r e l a t i o n s h i p with her mother-in-law, who d i d n ' t understand t h i s wife's d e s i r e to have a weekend away, and the subsequent g u i l t i t c r e a t e d f o r the wife : W.8 She d i d n ' t understand. I mean, i f she'd understood t h a t , she might have s a i d "Well, have a r e a l l y n i c e weekend. Don't worry about [husband] or [so n ] . We'll make sure e v e r y t h i n g i s f i n e " . . . When I say the understanding, the understanding t h a t you need some time f o r y o u r s e l f , the understanding t h a t you're r e a l l y depressed and p i s s e d o f f and t h a t type of thing...she doesn't see any of my needs...I won't a l l o w myself to engage i n t o her game of making me f e e l g u i l t y . Not a l l wives f e l t they had someone who understood them. The tremendous need to have someone to t a l k to who understands i s r e f l e c t e d i n the f o l l o w i n g account of one wife who i d e n t i f i e d t h a t she had no-one at a l l to t a l k to about her f e e l i n g s : W.3 I never had anybody to t a l k t o . So the best f r i e n d I ever had was my shower. I would go i n the shower and I'd t u r n i t on and I would c r y , and I'd be j u s t l i k e a wet d i s h r a g when I came out of t h e r e . Many wives r e c e i v e d understanding from a v a r i e t y of d i f f e r e n t people, such as f a m i l y , f r i e n d s and i n d i v i d u a l h e a l t h care p r o f e s s i o n a l s . An e s p e c i a l l y important source of understanding, and one of major valu e , was t h e i r husbands. While some wives i d e n t i f i e d t h a t subsequent to the i l l n e s s t h e i r husbands no longer understood them: "he's too i n v o l v e d with h i s i l l n e s s to see my s i t u a t i o n " , "I've l o s t my best f r i e n d , t h a t ' s the hardest p a r t " , "we don't even t a l k anymore", other wives i d e n t i f i e d t h a t i t was the husband who was the primary source of understanding and support: "he's my rock, he keeps me going", "he's my best f r i e n d and my o n l y c o n f i d a n t " . T h i s next account i s an example of how one husband provided t h i s understanding: W.4 He's very good. I've j u s t s t a r t e d to p l a y g o l f i n the l a s t two or three years and i t ' s been [husband] t h a t ' s made me do i t , because he f e e l s I 102 have to get away, get out and do things, you know, by myself. These accounts show how being understood supports these wives in l i v i n g with ambivalence. Understanding allowed these wives to appreciate that t h e i r feelings were acknowledged and validated, and decreased the g u i l t they experienced. This theme, the nature of support, has addressed three sub-themes: support for caregiving, support for distancing and support for ambivalence. Support for the f i r s t sub-theme was explored through discussion of information, p r a c t i c a l assistance, acknowledgement, and finances. Support for distancing addressed s o c i a l a c t i v i t i e s , professional services, and anticipatory support. F i n a l l y , "being understood" was presented as the type of support these wives found helpful in l i v i n g with ambivalence. Summary This chapter presented the findings of t h i s study. The wives perception of support was embedded within their caregiving experience which involved a strong commitment to caregiving while simultaneously desiring some distance from caregiving to pursue personal a c t i v i t i e s and inte r e s t s . These simultaneous c o n f l i c t i n g needs resulted in ambivalence. Support for caregiving was i d e n t i f i e d as information, p r a c t i c a l assistance, acknowledgement, and adequate f i n a n c e s . Support f o r d i s t a n c i n g i n c l u d e d s o c i a l a c t i v i t i e s , p r o f e s s i o n a l s e r v i c e s , and a n t i c i p a t o r y support. Being understood was shown to be a major means of support f o r l i v i n g with ambivalence. The f i n d i n g s showed t h a t the wives d i d not f e e l comfortable i n v e r b a l l y r e q u e s t i n g support and g e n e r a l l y o n l y asked f o r support when they viewed i t as a b s o l u t e l y necessary. As w e l l , these wives c l e a r l y expressed d i s c o m f o r t with being seen by others as needy. F i n a l l y , i n s p i t e of the s t a t e d burdens of c a r e g i v i n g , these wives were g e n e r a l l y s a t i s f i e d with the amount of support r e c e i v e d , although l e s s s a t i s f i e d with the q u a l i t y of support r e c e i v e d . The f o l l o w i n g chapter d i s c u s s e s these f i n d i n g s i n l i g h t of r e l a t e d theory and r e s e a r c h . C H A P T E R 5 D I S C U S S I O N O F F I N D I N G S I n t r o d u c t i o n T h i s chapter d i s c u s s e s the f i n d i n g s of t h i s study i n r e l a t i o n to p e r t i n e n t l i t e r a t u r e and r e l a t e d r e s e a r c h . The f o l l o w i n g d i s c u s s i o n i s organized i n t o two s e c t i o n s . The f i r s t s e c t i o n focuses on the s o c i a l i z a t i o n of women i n t o c a r e g i v i n g , and the second s e c t i o n e x p l o r e s the is s u e s around r e q u e s t i n g and r e c e i v i n g support. T h e S o c i a l i z a t i o n o f W o m e n I n t o C a r e g i v i n g The f i n d i n g s of t h i s study showed t h a t the meaning these wives gave t o s o c i a l support was f i r m l y embedded w i t h i n t h e i r c a r e g i v i n g experience. In f a c t , when asked about s o c i a l support these wives spoke at le n g t h about c a r e g i v i n g . T h i s i n t e r e s t i n g f i n d i n g suggests t h a t f o r these women t h e i r c a r e g i v i n g experience was c l o s e l y l i n k e d to the meaning they gave to s o c i a l support. C r u c i a l t o the c a r e g i v i n g experience was the wives' commitment to p r o v i d i n g care to t h e i r husbands. T h i s s e c t i o n explores these f i n d i n g s i n l i g h t of the s o c i a l i z a t i o n process of women i n our s o c i e t y . I n i t i a l l y , the s o c i a l i z a t i o n of women w i l l be d i s c u s s e d i n r e l a t i o n to the wives' c a r e g i v i n g commitment. Subsequently, the s o c i a l i z a t i o n of women w i l l provide i n s i g h t i n e x p l o r i n g the r e l a t i o n s h i p between the c a r e g i v i n g experience and s o c i a l support. The s o c i a l i z a t i o n process provides a b a s i s f o r understanding the commitment the wives i n t h i s study made i n c a r i n g f o r t h e i r husbands. This i s not to suggest that commitment to c a r e g i v i n g i s e n t i r e l y gender s p e c i f i c , but th a t the b a s i s of the commitment i s d i f f e r e n t f o r each gender. In our s o c i e t y , women are a s c r i b e d , to a much gr e a t e r extent than, men, e x p r e s s i v e and n u r t u r i n g f u n c t i o n s (Graham, 1983). In f a c t , women are presumed to be r e s p o n s i b l e f o r the w e l l - b e i n g of t h e i r f a m i l y members (Sommers, 1985), and today, as i n the past, i t i s expected t h a t women w i l l care f o r i l l f a m i l y members r e g a r d l e s s of competing demands and pe r s o n a l s a c r i f i c e s (Doyal, 1981). According t o Adams (1971) "...woman's primary and most v a l u a b l e s o c i a l f u n c t i o n i s to provide the tender and compassionate components of l i f e and th a t through the e x e r c i s e of these p a r t i c u l a r t r a i t s , women have s e t themselves up as the e x c l u s i v e model f o r p r o t e c t i n g , n u r t u r i n g , and f o s t e r i n g the growth of ot h e r s " (p.556). Not o n l y are these n u r t u r i n g f u n c t i o n s c e n t r a l to a woman's place i n s o c i e t y , but through enactment, they become c e n t r a l to how a woman d e f i n e s h e r s e l f i n r e l a t i o n to the world around her. As women d e f i n e themselves as n u r t u r e r s and p r o t e c t o r s of f a m i l y 106 members so do they assume the r e s p o n s i b i l i t i e s of caregiving for a c h r o n i c a l l y i l l family member. The nurturing functions of women incorporates the notion that the needs and concerns of others become a central concern for women in both the home and work settings. Implicit in t h i s i s that a woman's personal value and reward i s derived from the "...virtue of subordinating individual needs to the welfare of others..." (Adams, 1971, p.559). As well, research shows that g i r l s are s o c i a l i z e d to anticipate environmental demands, and attend to s t i m u l i , e s p e c i a l l y from other people (Bafdwick and Douvan 1971). This a b i l i t y , carried over into adulthood, equips women with the a b i l i t y to empathize with others. The wives in t h i s study repeatedly i d e n t i f i e d that their caregiving r e s p o n s i b i l i t i e s took precedence over their personal needs and i n t e r e s t s . While some women challenged t h i s by b r i e f l y distancing from caregiving to partake in personal interests, their a b i l i t y to empathize with th e i r husbands' circumstance and th e i r experience of g u i l t ultimately resulted in recommitment to caregiving. The power of the s o c i a l i z a t i o n of women, that i s , in learning to be aware of the needs of others and to consider those needs prior to t h e i r own, explains the g u i l t these wives f e l t when distancing. A l t e r n a t i v e l y , when the husbands were s a t i s f a c t o r i l y occupied, the wives perceived the 107 h u s b a n d s ' n e e d s t o be met and i t was o n l y t h e n t h a t t h e y were f r e e d t o a t t e n d t o p e r s o n a l a c t i v i t i e s w i t h o u t g u i l t . The w i v e s commitment t o c a r e g i v i n g i s f u r t h e r u n d e r s t o o d t h r o u g h women's r e l a t i o n s h i p s w i t h o t h e r s . B a r d w i c k and Douvan ( 1 9 7 1 ) i d e n t i f y t h a t women's p r i m a r y s o u r c e o f s e l f - e s t e e m i s g a i n e d t h r o u g h t h e p o s i t i v e r e s p o n s e s o f o t h e r s . As a r e s u l t , r e l a t i o n s h i p s a s d a u g h t e r s , f r i e n d s , w i v e s , a n d m o t h e r s become c r u c i a l s o u r c e s o f e s t e e m a n d v a l i d a t i o n a s w o r t h w h i l e p e o p l e . The s o c i a l a n d f a m i l i a l e x p e c t a t i o n t o assume t h e c a r e g i v i n g r o l e e n c o u r a g e women t o c o n f o r m t o t h e s e e x p e c t a t i o n s a s a way o f s e e k i n g a n d o b t a i n i n g a p p r o v a l , a nd o f a v o i d i n g t h e l o s s o f l o v e . I f e s t e e m i s d e r i v e d t h r o u g h t h e a p p r o v a l o f o t h e r s i t w o u l d become v e r y d i f f i c u l t f o r t h e s e w i v e s t o behave i n a way t h a t r e s u l t e d i n s e r i o u s d i s a p p r o v a l f r o m f a m i l y a n d f r i e n d s . I n f a c t , t h i s s o c i a l i z e d n e e d f o r e x t e r n a l a p p r o v a l may e x p l a i n why t h e s e w i v e s i d e n t i f i e d a c k n o w l e d g e m e n t and u n d e r s t a n d i n g a s e f f e c t i v e s u p p o r t i v e m e a s u r e s . The s o c i a l i z a t i o n o f women c a n a l s o p r o v i d e i n s i g h t i n t o t h e f i n d i n g t h a t , f o r t h e s e w i v e s , t h e m e a n i n g o f s o c i a l s u p p o r t was embedded w i t h i n t h e i r c a r e g i v i n g e x p e r i e n c e . F o r t h e s e women d i s c u s s i n g t h e i r c a r e g i v i n g e x p e r i e n c e was a n a t u r a l way o f a d d r e s s i n g t h e i r p e r c e p t i o n s o f s o c i a l s u p p o r t . I n f a c t , s e v e r a l w i v e s , 108 when asked about people or t h i n g s that made t h e i r day e a s i e r or more d i f f i c u l t responded by d i r e c t l y d i s c u s s i n g t h e i r c a r e g i v i n g e x p e r i e n c e . T h i s was an unexpected f i n d i n g and the f o l l o w i n g d i s c u s s i o n attempts t o provide some understanding of t h i s r e l a t i o n s h i p between c a r e g i v i n g and s o c i a l support. As p r e v i o u s l y i d e n t i f i e d , the n u r t u r i n g and p r o t e c t i v e f u n c t i o n s are p r i m a r i l y a s c r i b e d to women, and i t i s through these f u n c t i o n s that women formulate t h e i r i d e n t i t i e s (Graham, 1983). In f a c t , f o r some women these n u r t u r i n g f u n c t i o n s are c e n t r a l to t h e i r s e l f - c o n c e p t s (Adams, 1971). Given t h i s understanding, i t may be th a t some women are s o c i a l i z e d so strongly, to provide care t h a t they i n t e r p r e t s o c i a l support as something they give r a t h e r than something they r e c e i v e . In t h i s sense, i t becomes q u i t e n a t u r a l f o r a wife to d i s c u s s her c a r e g i v i n g experience when asked about support. A l l of the wives i n t h i s study spoke a t length about c a r e g i v i n g . They i d e n t i f i e d a number of su p p o r t i v e a c t i v i t i e s they provided to t h e i r husbands such as p r a c t i c a l a s s i s t a n c e , emotional and s o c i a l companionship, i n f o r m a t i o n , and management of d a i l y a c t i v i t i e s . In f a c t , s e v e r a l women expanded t h e i r s u p p o r t i v e a c t i v i t i e s to i n c l u d e the p r o v i s i o n of i n f o r m a t i o n and comfort to members out s i d e the f a m i l y . I t would appear t h a t , f o r the wives i n t h i s study, the p r o v i s i o n of support was as important to t h e i r 109 meaning of s o c i a l support as was the receiving of support. . The s o c i a l i z a t i o n of women as n u r t u r e r s i m p l i e s that the needs and demands of others become a woman's major concern and th a t the meeting of these needs takes precedence over a l l other c l a i m s (Adams,1971). Thus, women l e a r n to subordinate and suppress p e r s o n a l needs i n favor of meeting the needs of o t h e r s . T h i s was tr u e of the wives i n t h i s study who r e p e a t e d l y spoke of p l a c i n g t h e i r husbands' needs before t h e i r own. I t may be th a t as these wives became i n c r e a s i n g l y i n v o l v e d i n c a r e g i v i n g , t h e i r awareness of t h e i r own needs were suppressed, and consequently so were t h e i r p e r c e p t i o n s of the need f o r support. T h e r e f o r e , these women became much more attuned to the support needs of t h e i r husbands than of t h e i r own support needs and consequently addressed t h e i r r o l e i n p r o v i d i n g care to t h e i r husbands as a way of e x p l a i n i n g t h e i r p e r c e p t i o n s of s o c i a l support. T h i s concept of su p p r e s s i n g one's own needs i n favor of others may a l s o e x p l a i n why these wives so c l e a r l y i d e n t i f i e d t h a t support f o r t h e i r husbands was support f o r themselves. T h e i r primary concern f o r the w e l l - b e i n g of t h e i r husbands l e d these women to place t h e i r husbands' needs f o r support a t the f o r e f r o n t . Given these wives' p e r c e p t i o n s , t h a t support f o r t h e i r husband was support f o r themselves, i t was i n e v i t a b l e t h a t these women would d i s c u s s t h e i r c a r e g i v i n g experience when ad d r e s s i n g s o c i a l support. These women are the primary p r o v i d e r s of support to t h e i r husbands. I f the wives primary source of support was r e c e i v e d through the support provided to the husbands, and the wives themselves were the primary p r o v i d e r s of th a t support, i t would have been impossible to d i s c u s s the meaning of support without a d d r e s s i n g t h e i r c a r e g i v i n g experience. In t h i s a n a l y s i s i t may be that the wives' p e r c e i v e d a b i l i t y to provide q u a l i t y care to t h e i r husbands was a more powerful f a c t o r i n t h e i r w e l l -being than e x t e r n a l sources of support. In f a c t , almost a l l the wives i n t h i s study addressed t h e i r p e r s o n a l s t r e n g t h and a b i l i t y to provide q u a l i t y care as powerful p o s i t i v e f a c t o r s i n t h e i r d a i l y l i v e s . S i m i l a r i l y , Marcus and Jaegar (1982) found t h a t "coping", " g e t t i n g r e s u l t s " , and "doing a good job" provided the g r e a t e s t degree of d a i l y s a t i s f a c t i o n f o r c a r e g i v e r s . In summary, the s o c i a l i z a t i o n process of women i n our s o c i e t y leads some women to be deeply committed to p r o v i d i n g care to t h e i r c h r o n i c a l l y i l l husbands. P r o v i d i n g care i s a way of f u l f i l l i n g s o c i e t y ' s e x p e c t a t i o n s of women as n u r t u r e r s and p r o t e c t o r s of f a m i l y members. Moreover, t h i s n u r t u r i n g f u n c t i o n , as w e l l as the tendency f o r women to subordinate t h e i r own needs, pro v i d e s some i n s i g h t i n t o why the wives i n t h i s study embedded s o c i a l support w i t h i n the c a r e g i v i n g e x perience. Issues Around Requesting and R e c e i v i n g Support The f i n d i n g s of t h i s study showed t h a t although the wives i d e n t i f i e d a number of types of support they found u s e f u l , there were s e v e r a l i s s u e s around the l i t e r a l r e q u e s t i n g and r e c e i v i n g of support. T h i s s e c t i o n d i s c u s s e s the d i f f i c u l t i e s wives had i n r e q u e s t i n g support and the lack of p e r c e i v e d need f o r more support than p r e s e n t l y r e c e i v i n g , i n s p i t e of the i d e n t i f i e d burdens. These wives i d e n t i f i e d p r a c t i c a l a s s i s t a n c e , from f a m i l y , f r i e n d s and h e a l t h p r o f e s s i o n a l s , as a v a l u a b l e form of support. At the same time, these wives expressed a lack of w i l l i n g n e s s to request t h i s type of support and were more l i k e l y to wait u n t i l t h i s support was o f f e r e d , and even then sometimes r e f u s e d i t . S i m i l a r l y , Johnson (1983) found t h a t spousal c a r e g i v e r s were l e s s l i k e l y to c a l l upon o u t s i d e help than other types of c a r e g i v e r s . One e x p l a n a t i o n of the r e s i s t a n c e i n a c c e p t i n g support l i e s i n the s o c i a l i z a t i o n of women as n u r t u r e r s and p r o t e c t o r s of f a m i l y members. As such, women's s e l f -d e f i n i t i o n i s based, i n p a r t , on t h e i r a b i l i t y to enact these n u r t u r i n g f u n c t i o n s (Anderson, 1983), and i t may be th a t the wives i n t h i s study viewed support as a 112 r e f l e c t i o n of t h e i r competency as c a r e g i v e r s . Moreover, the lack of d i s t i n c t i o n between c a r e g i v i n g and homemaking r e s p o n s i b i l i t i e s , due to the lack of c l e a r r o l e d e f i n i t i o n s (Baruch, Biener, & Barnett, 1987), suggests t h a t women may expect the same degree of competency i n performing c a r e g i v i n g tasks as they expect of themselves i n performing homemaking t a s k s . Thus, the a b i l i t y to independently and competently c a r r y out c a r e g i v i n g r e s p o n s i b i l i t i e s becomes c e n t r a l to how a woman values h e r s e l f . Given t h i s understanding, i t i s c l e a r t h a t a c c e p t i n g p r a c t i c a l a s s i s t a n c e , however a p p r o p r i a t e , may r e s u l t i n the woman's s e l f - e s t e e m being compromized. This may be p e r c e i v e d by some women as more d e t r i m e n t a l than the a s s o c i a t e d burdens of independent c a r e g i v i n g . G i l h o o l y (1984) found t h a t s a t i s f a c t i o n with a s s i s t a n c e r e c e i v e d was more c l o s e l y c o r r e l a t e d to c a r e g i v e r w e l l -being than the amount of a s s i s t a n c e r e c e i v e d . Consequently, i f p r a c t i c a l a s s i s t a n c e i s viewed as c o n f l i c t u a l by the c a r e g i v e r t h i s a s s i s t a n c e i s l e s s l i k e l y to be used i n the f u t u r e . S o c i a l e x p e c t a t i o n may a l s o i n f l u e n c e a person's w i l l i n g n e s s to accept support. Gourlash (1978), notes t h a t a person's s o c i a l network t r a n s m i t s a t t i t u d e s , v a l u e s , and norms about h e l p - s e e k i n g . She s t a t e s t h a t i f the norms of a s o c i a l network discourage h e l p - s e e k i n g and encourage s e l f - s u f f i c i e n c y i t i s more l i k e l y t h a t a 113 person, who has adopted the norms of the group, w i l l be motivated t o manage t h e i r s i t u a t i o n independently. For the wives i n t h i s study, i t might be th a t h e l p -seeking behaviours were a n t i t h e t i c a l to t h e i r group norms, and thus, these women l i k e l y adopted s i m i l a r v a l u e s , a t t i t u d e s and behaviours. Because c a r e g i v i n g and homemaking lack c l e a r r o l e d e f i n i t i o n s and consequently may o v e r l a p i n c e r t a i n areas, the burdens of c a r e g i v i n g are l e s s l i k e l y to be seen as d i f f e r e n t from those of homemaking. Consequently the group norms of s e l f -s u f f i c i e n c y may be extended to in c l u d e c a r e g i v i n g r e s p o n s i b i l i t i e s . I f the ex p e c t a t i o n s of the s o c i a l network are th a t women are able to perform c a r e g i v i n g t a s k s competently and independently i t i s l i k e l y t h a t the wives themselves i n t e r n a l i z e d t h i s e x p e c t a t i o n and were l e s s l i k e l y to request or accept support. As w e l l , i t i s p r i m a r i l y through t h e i r s o c i a l network t h a t these wives r e c e i v e d acknowledgement and understanding. To accept a s s i s t a n c e , and behave i n o p p o s i t i o n to the group norms would mean these wives would j e o p a r d i z e a major source of support i n the form of acknowledgement and understanding. I n t e r e s t i n g l y , r e s e a r c h shows t h a t wife c a r e g i v e r s r e c e i v e l e s s support than husband c a r e g i v e r s (Johnson, 1983; Polansky, 1982). In f a c t , Polansky (1982) found t h a t while 65% of male c a r e g i v e r s r e c e i v e d formal support, o n l y 42% of female c a r e g i v e r s r e c e i v e d s i m i l a r support. It may be that group norms are less accepting of help-seeking behaviours of wives than of husbands with respect to caregiving. Social i s o l a t i o n , r e s u l t i n g from the demands of caregiving, is well documented in the l i t e r a t u r e (Cantor, 1983; Chenoweth & Spencer, 1986; George & Gwyther, 1986; Marcus & Jaeger, 1982). The consequences of s o c i a l i s o l a t i o n may provide insight into the issues around accepting support. As caregiving demands Increase, women have less time for s o c i a l a c t i v i t i e s with friends (Cantor, 1983). In a study of 23 caregivers, primarily wives, Scott, Roberto, and Hutton (1986) found that s o c i a l v i s i t s by other family members were infrequent, even though they were i d e n t i f i e d as the type of support most appreciated by caregivers. This decreased opportunity for s o c i a l i z a t i o n may r e s u l t in less awareness by friends of the associated burdens of caregiving and consequently lead to less offers of assistance. Not only did the wives in t h i s study have fewer opportunities for s o c i a l a c t i v i t i e s but they preferred to use s o c i a l opportunities as a way of distancing from caregiving, thus spent minimal time sharing with their friends the burdens of caregiving. Consequently, friends may have continued to assume that these wives did not require support. S o c i a l i s o l a t i o n can a l s o preclude c a r e g i v e r s from meeting other c a r e g i v e r s who are i n s i m i l a r s i t u a t i o n s . Without t h i s exposure, c a r e g i v e r s may experience f e e l i n g s of i n s e c u r i t y , b e l i e v i n g t h a t others are able to cope and t h e r e f o r e so should they. I n t e r e s t i n g l y , most of the women i n t h i s study asked i f the other wives had s i m i l a r f e e l i n g s about c e r t a i n i s s u e s . Exposure to other c a r e g i v e r s could l e a d t o awareness of common i s s u e s and concerns. Through exposure to other c a r e g i v e r s , the wives would have an o p p o r t u n i t y t o experience other group norms more conducive to h e l p - s e e k i n g behaviours, thus l e g i t i m i z i n g the acceptance of support. Robinson (1988), i n a study of 20 c a r e g i v e r s , developed a s o c i a l s k i l l s program aimed towards m o b i l i z i n g s o c i a l support i n the c a r e g i v e r ' s environment. Although burden scores were lower f o r the treatment group than f o r the c o n t r o l group, Robinson notes t h a t the s u b j e c t s found the s h a r i n g of c a r e g i v i n g experiences more s i g n i f i c a n t i n d e c r e a s i n g burden than the g a i n i n g of s o c i a l s k i l l s . She does note however, t h a t the p o s t - t e s t d i d not a l l o w adequate time to d e t e c t the impact of s o c i a l s k i l l s t r a i n i n g . The d i s c u s s i o n of r e q u e s t i n g support i s not complete without e x p l o r i n g the i m p l i c a t i o n s of i n d i v i d u a l p e r s o n a l i t y d i f f e r e n c e s . The l i t e r a t u r e on s o c i a l support documents that s o c i a l s k i l l s are important to maintain and mobilize s o c i a l support (Robinson, 1988). In thi s sense s o c i a l s k i l l s are those that predispose an individual to develop a functional support network. Robinson (1988), i d e n t i f i e s a number of s o c i a l s k i l l s necessary to e f f e c t i v e l y u t i l i z e available support: introducing s e l f to others, making phone c a l l s to i n i t i a t e s o c i a l contact, p a r t i c i p a t i n g in groups, using assertive behaviour*to meet needs, engaging in s e l f -0 disclosure, and being responsive. Caregivers who are unskilled in u t i l i z i n g these assertive s k i l l s and who have less experience In negotiating bureaucracies are less l i k e l y to receive the support needed to lessen the burdens of caregiving (Robinson, 1988). In t h i s study, a number of women, id e n t i f i e d that they were reluctant to ask for help from family and friends. They viewed these people as having their own r e s p o n s i b i l i t i e s and were reluctant to make additional demands on their time. This may r e f l e c t a lack of assertiveness r e s u l t i n g from l i t t l e experience in openly expressing personal needs. As discussed in the previous section women have been s o c i a l i z e d to place other people's needs before their own. Consequently these wives may have limited assertive a b i l i t i e s in requesting support from others, however j u s t i f i e d . Not only did the wives in thi s study have d i f f i c u l t y requesting support, they were also reluctant in expressing the need f o r support, i n f a c t , although they i d e n t i f i e d a number of u s e f u l types of support, they f r e q u e n t l y i d e n t i f i e d support as something they would use i n the f u t u r e r a t h e r than the present. T h i s f i n d i n g w i l l now be addressed. Research f i n d i n g s show t h a t spousal c a r e g i v e r s i d e n t i f y a lower need f o r s o c i a l support than do other types of c a r e g i v e r s (Cantor, 1981; Hess & Solo, 1985; Soldo & Myllyluoma). Hess and Soldo (1985) i d e n t i f y t h i s as a d i f f e r e n t i a l t o l e r a n c e t h r e s h o l d . T h i s suggests there i s something about the m a r i t a l dyad t h a t d i m i n i s h e s the p e r c e i v e d need f o r support. Hess and Soldo suggest t h a t one e x p l a n a t i o n i s t h a t "spouses are w i l l i n g to do almost anything, i n c l u d i n g r e l u c t a n t l y a d m i t t i n g s e r v i c e p r o v i d e r s i n t o t h e i r own homes, to prevent the n u r s i n g home admission of t h e i r l i f e l o n g companion" (p.79). They go on to say that companionship of a spouse i s a c r u c i a l i n t e r p e r s o n a l r e s o u r c e , even i f the r e l a t i o n s h i p i s d i s t a n t or i n c o n f l i c t . At the very l e a s t , a spouse i s an "accustomed other" and j u s t being together " c o n f e r s an a u t h e n t i c i t y to each p a r t n e r ' s i d e n t i t y " (p.75). I t may be t h a t the wives i n t h i s study, g e n u i n e l y do not p e r c e i v e a need f o r more support than they are a l r e a d y r e c e i v i n g because they have encorporated the demands of c a r e g i v i n g i n t o t h e i r d a i l y regime. Interestingly, in a study of 167 family caregivers Johnson (1983) found that the use of a l l formal support was s i g n i f i c a n t l y lower among spousal caregivers than non-spousal caregivers. She concluded that inherent within the marital dyad is the expectation that husbands and wives f u l f i l l each others instrumemtal, s o c i a l , and emotional needs. Consequently spousal caregivers when facing chronic i l l n e s s , seek and use less formal support than off-spring or other types of caregivers. In contrast to t h i s finding, Robertson and Reisner (1982) found that over one-half of the 26 caregivers (11 spouses) expressed the need for community services, although only four were ac t u a l l y receiving these servises. A further explanation as to why these wives did not perceive the immediate need for support l i e s in the concept of r e c i p r o c i t y which i s said to be the foundation of s o c i a l interaction (Gouldner, 1960). According to Longino and Lipman (1985) "people in kinship patterns reward each other for the i r contributions, investments, continuity, and lo y a l t y , thus maintaining a network of mutual rights and duties" (p.220). Thus, there is a normative obligation on the part of kin to both help and to receive help. It may be that the wives in t h i s study have adjusted to t h e i r caregiving experience and have redefined the rec i p r o c a l roles within their marital r e l a t i o n s h i p . As r e c i p r o c i t y i s c a l c u l a t e d over time, i t may be that these wives view t h e i r c a r e g i v i n g r e s p o n s i b i l i t i e s as b a l a n c i n g p r e v i o u s l y unequal exchanges. Or i t may be t h a t the wives are b u i l d i n g up a s t o r e of c r e d i t s i n the hope t h a t someone would be a v a i l a b l e to care f o r them, giv e n the n e c e s s i t y . I t may a l s o be t h a t these wives view r e c i p r o c a l exchange as extending beyond the m a r i t a l dyad and t h a t t h e i r indebtedness accrued from the o u t s i d e support r e c e i v e d i s balanced through meeting the c a r e g i v i n g r e s p o n s i b i l i t i e s . Research shows t h a t over time m a r i t a l p a r t n e r s p e r c e i v e i n c r e a s i n g e q u a l i t y of exchanges w i t h i n the m a r i t a l dyad, and t h a t when i t i s not p e r c e i v e d as egual most p a r t n e r s f i n d t h e i r marriage imbalances i n t h e i r favor (Schafer & K e i t h , 1981). I t may be t h a t the wives i n t h i s study, viewed an e q u i t a b l e m a r i t a l r e l a t i o n s h i p due to the husbands' continued f i n a n c i a l p r o v i s i o n s i n the form of investments and pensions as b a l a n c i n g the wives' p r o v i s i o n of c a r e . As w e l l , a number of these wives i d e n t i f i e d t h e i r husbands as t h e i r primary c o n f i d a n t and major source of emotional support. T h i s may have been a f a c t o r i n the p e r c e i v e d balance of exchanges, and may f u r t h e r e x p l a i n why these wives d i d not p e r c e i v e the need f o r support r e g a r d l e s s of the burdens. Summary T h i s chapter has d i s c u s s e d the f i n d i n g s of t h i s study. E x p l o r i n g the s o c i a l i z a t i o n of women helped to c l a r i f y why these wives were so committed i n p r o v i d i n g care to t h e i r husbands. I t a l s o provided some i n s i g h t i n t o why the wives experienced such g u i l t when d i s t a n c i n g from c a r e g i v i n g . T h i s d i s c u s s i o n a l s o e x p l o r e d the p o s s i b l e reasons why these wives experienced d i f f i c u l t y i n r e q u e s t i n g and r e c e i v i n g support and why these wives i d e n t i f i e d a lack of p e r c e i v e d need f o r immediate support. 121 CHAPTER 6 SUMMARY, CONCLUSIONS, AND IMPLICATIONS FOR NURSING Summary T h i s study was designed to explore and d e s c r i b e wives* p e r c e p t i o n s of s o c i a l support while l i v i n g with and c a r i n g f o r husbands who have m u l t i p l e s c l e r o s i s . The emotional and p h y s i c a l burdens of c a r e g i v i n g have r e s u l t e d i n c a r e g i v e r s being i d e n t i f i e d as "the hidden p a t i e n t s " (Fengler and Goodrich 1979). The importance of p r o v i d i n g support to f a m i l y c a r e g i v e r s , such as i n f o r m a t i o n or p r a c t i c a l a s s i s t a n c e , i s w e l l recognized to modify the burden of c a r e g i v i n g ( Z a r i t and Z a r i t , 1982). However, there has been l i t t l e r e s e a r c h t h a t has ex p l o r e d the s u b j e c t i v e nature of s o c i a l support and, as nurses are a major source of support to c a r e g i v e r s of f a m i l y members, i t i s c r i t i c a l t h a t they understand the c a r e g i v e r s ' p e r s p e c t i v e of support. I t i s o n l y through t h i s understanding t h a t nurses w i l l be able to o f f e r support i n a meaningful way. In order to understand s o c i a l support from the c a r e g i v e r s ' p e r s p e c t i v e , the q u a l i t a t i v e method of phenomenology was used. Phenomenology seeks to understand "...the human experience as i t i s l i v e d " ( O i l e r , 1982, p.178). T h i s approach examines peoples' p e r c e p t i o n s of events i n t h e i r l i v e s and t r i e s to understand the meaning these experiences have for them. The participants are viewed as knowledgeable informants, who work with the researcher to f u l l y explain their perspective. Eight wives participated in t h i s study. They ranged in age from 38 to 61 years, with a mean age of 47.5 years. The wives were married an average of 21 years and had assumed caregiving functions at the time of diagnosis, between one and f i f t e e n years previously. As well, four wives worked outside the home and a l l but one husband were r e t i r e d as a re s u l t of multiple s c l e r o s i s . Data c o l l e c t i o n and data analysis occurred concurrently. Each wife was interviewed twice. The i n i t i a l interview was unstructured and the questions were broadly stated in order to encourage the wives to discuss those events that held greatest meaning for them. In exploring the ideas that the women i d e n t i f i e d as meaningful, the researcher gained a deeper understanding of the meaning these wives gave to s o c i a l support. Each interview was analyzed separately and in r e l a t i o n to the other interviews. Emerging themes were i d e n t i f i e d and subsequently validated and c l a r i f i e d in second interviews. By constantly moving back and forth between the data and the themes an ove r a l l framework was developed that r e f l e c t e d the wives perceptions of s o c i a l support. Two central themes emerged from the data 123 a n a l y s i s : the c a r e g i v i n g experience, and the nature of support. The f i r s t theme explo r e d the c a r e g i v i n g experience. The wives i n t h i s study embedded t h e i r d i s c u s s i o n of support w i t h i n t h e i r c a r e g i v i n g experience. Within t h i s f i r s t theme three sub-themes emerged: committing to c a r e g i v i n g , d i s t a n c i n g from c a r e g i v i n g , l i v i n g with ambivalence. These wives were s t r o n g l y committed to p r o v i d i n g care to t h e i r husbands. T h e i r commitment to t h e i r marriages, t h e i r lack of d i s t i n c t i o n between the r o l e of wife and c a r e g i v e r , and t h e i r empathy towards t h e i r husbands a l l c o n t r i b u t e d to t h i s c a r e g i v i n g commitment. As the r o l e of c a r e g i v i n g became i n c r e a s i n g l y demanding of time and emotional energy, these wives experienced a d e s i r e to have some d i s t a n c e from the c a r e g i v i n g e xperience. The simultaneous commitment to p rovide care and the d e s i r e f o r d i s t a n c e r e s u l t e d i n f e e l i n g s of ambivalence and g u i l t . The second theme explo r e d the nature of support. Three sub-themes were d i s c u s s e d : support f o r c a r e g i v i n g , support f o r d i s t a n c i n g , and support f o r ambivalence. These wives i d e n t i f i e d i n f o r m a t i o n , p r a c t i c a l a s s i s t a n c e , acknowledgement, and f i n a n c e s as types of support h e l p f u l i n t h e i r c a r e g i v i n g r o l e . Support for d i s t a n c i n g was provided through s o c i a l a c t i v i t i e s f o r both the husband and wife as i n d i v i d u a l s and as a couple; p r o f e s s i o n a l s e r v i c e s such as homemakers and r e s p i t e c a r e ; and through a n t i c i p a t o r y a s s i s t a n c e . F i n a l l y , these wives i d e n t i f i e d a s t r o n g d e s i r e f o r f a m i l y and h e a l t h p r o f e s s i o n a l s to understand t h e i r c a r e g i v i n g experience and t h i s understanding was support f o r l i v i n g with ambivalence. In g e n e r a l these wives f e l t t h a t s o c i a l support f o r t h e i r husbands was support f o r them and although they were s a t i s f i e d with the support provided by f a m i l y and f r i e n d s , they were l e s s s a t i s f i e d with the support provided by h e a l t h p r o f e s s i o n a l s . C o n c l u s i o n s The r e s e a r c h f i n d i n g s l e d to a number of c o n c l u s i o n s about these wives' p e r c e p t i o n s of s o c i a l support while l i v i n g with and c a r i n g f o r husbands with m u l t i p l e s c l e r o s i s : 1. The meaning these wives gave to s o c i a l support was embedded w i t h i n t h e i r c a r e g i v i n g e xperience. Support was viewed w i t h i n the context of how adequately the husband was cared f o r and how s u c c e s s f u l e f f o r t s were to maintain the husband's independence. T h e r e f o r e , support provided to the husband i n d i r e c t l y acted as support to the wife by a l t e r i n g her c a r e g i v i n g e xperience. 2 . Although these wives i d e n t i f i e d a number of d i f f e r e n t types of support they found u s e f u l , r e q u e s t i n g and r e c e i v i n g support was o f t e n d i f f i c u l t as many wives d i d 125 not p e r c e i v e themselves as "needy" r e g a r d l e s s of the p e r c e i v e d burdens. 3. Many wives d i d not p e r c e i v e the need f o r more p r o f e s s i o n a l support than they were r e c e i v i n g a t the present time. These wives d i d , however, a n t i c i p a t e t h a t p r o f e s s i o n a l support would be a v a i l a b l e when needed and t h i s a n t i c i p a t i o n of support acted i n i t s e l f as a s t r o n g s u p p o r t i v e measure. 4 . Those wives who had used p r o f e s s i o n a l support i n the form of i n f o r m a t i o n , acknowledgement, homemaker s e r v i c e , and r e s p i t e care, were l a r g e l y d i s a p p o i n t e d i n the q u a l i t y of support p r o v i d e d . 5. These wives had a s t r o n g d e s i r e to be acknowledged as competent c a r e g i v e r s and to be understood by f a m i l y , f r i e n d s , and h e a l t h p r o f e s s i o n a l s . T h i s acknowledgement and understanding supported wives by enhancing t h e i r i d e n t i t i e s as capable, c a r i n g and knowledgeable people. Nursing I m p l i c a t i o n s The f i n d i n g s of t h i s study suggest a number of 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 , n u r s i n g e d u c a t i o n , and n u r s i n g r e s e a r c h . The f o l l o w i n g s e c t i o n d i s c u s s e s these i m p l i c a t i o n s . 126 I m p l i c a t i o n s f o r Nursing P r a c t i c e The r e s u l t s of t h i s study provide d i r e c t i o n f o r nu r s i n g p r a c t i c e . Of primary importance i s the need f o r nurses to recognize the everchanging p h y s i c a l and emotional demands c a r e g i v i n g p l a c e s on wives of husbands with c h r o n i c i l l n e s s e s . Due to the downward t r a j e c t o r y of m u l t i p l e s c l e r o s i s and the r e s u l t i n g i n c r e a s e i n c a r e g i v i n g r e s p o n s i b i l i t i e s nurses must ensure adequate and r e g u l a r assessment of the support needs of both the c a r e g i v e r and the c h r o n i c a l l y i l l f a m i l y member. In a s s e s s i n g the need f o r support i t i s c r i t i c a l t h a t nurses rec o g n i z e t h a t support provided to the husband i s i n i t s e l f support f o r the wi f e . T h i s study found t h a t wives viewed support w i t h i n the context of t h e i r c a r e g i v i n g experience and those s e r v i c e s that a s s i s t e d the husband t o maintain or ga i n independence s i m u l t a n e o u s l y supported the wife by p r o v i d i n g o p p o r t u n i t i e s f o r her to atte n d to pers o n a l needs. T h e r e f o r e , one n u r s i n g approach would be to o f f e r support aimed towards enhancing the husband's independence. For example, day programs t h a t i n v o l v e d the husband i n a c t i v i t i e s o u t s i d e the home would provide the wife o p p o r t u n i t i e s to atte n d to household and p r o f e s s i o n a l demands. S e l f - h e l p groups c o u l d be viewed as an o p p o r t u n i t y f o r c h r o n i c a l l y i l l persons to share t h e i r concerns while s i m u l t a n e o u s l y a l l o w i n g the c a r e g i v e r to d i s t a n c e from c a r e g i v i n g r e s p o n s i b i l i t i e s . Arranging r e g u l a r and c o n s i s t e n t v o l u n t e e r v i s i t s i n the home would provide s o c i a l o p p o r t u n i t i e s f o r the husband and si m u l t a n e o u s l y provide the wife o p p o r t u n i t i e s f o r perso n a l a c t i v i t e s out of the home. F i n a l l y , r e s p i t e care would provide both the husband and wife a complete break from t h e i r usual r o u t i n e and the intense amount of time spent t o g e t h e r . In o f f e r i n g these s e r v i c e s i t i s c r i t i c a l f o r nurses to r e c o g n i z e t h a t wives do not want to be seen as "needy". Consequently, the approach used i n o f f e r i n g support w i l l determine the wife's w i l l i n g n e s s to accept support. For example, nurses can explore with the wife the importance of m a i n t a i n i n g personal h e a l t h and t h a t u s i n g the a v a i l a b l e s e r v i c e s provides the wife with time to meet her own needs. In t h i s way the wife's sense of competency i s not compromized. The nurse c o u l d a l s o e x p l o r e the importance of the husband having s o c i a l o p p o r t u n i t i e s and a c t i v i t i e s apart from the wi f e , thus encouraging the concept of independent a c t i v i t i e s f o r both husband and w i f e . The study r e s u l t s provide d i r e c t i o n as to the nature of c a r e g i v e r e d u c a t i o n . Information i s of p a r t i c u l a r importance. The more s p e c i f i c the i n f o r m a t i o n the more u s e f u l i t i s to the c a r e g i v e r . Nurses attuned to the need f o r s p e c i f i c i n f o r m a t i o n equip wives with the knowledge 128 and s k i l l to perform tasks such as d a i l y hygiene, t r a n s f e r r i n g , d i e t , and e x e r c i s e . Information concerning f i n a n c i a l and p r a c t i c a l resources i n c r e a s e c a r e g i v e r knowledge with which to make d e c i s i o n s . In a d d i t i o n , c a r e g i v e r education c o u l d focus on the ways and means of a c c e s s i n g and u t i l i z i n g p r o f e s s i o n a l s e r v i c e s . Support groups geared towards the development of s e l f awareness may le a d to r e c o g n i t i o n of pers o n a l and common concerns r e l a t e d to c a r e g i v i n g . T h i s i n t u r n , might v a l i d a t e f o r the wife l e g i t i m a t e use of h e l p -s eeking behaviours. In a d d i t i o n , the development of a s s e r t i v e s k i l l s may equip c a r e g i v e r s with the resources necessary to e f f e c t i v e l y u t i l i z e p r o f e s s i o n a l s e r v i c e s . F i n a l l y , the f i n d i n g s of t h i s study i n d i c a t e d t h a t these wives d e s i r e d g r e a t e r acknowledgement and understanding from h e a l t h care p r o f e s s i o n a l s . Not s u r p r i s i n g l y , one of the most v a l u a b l e n u r s i n g i n t e r v e n t i o n s i s the use of t h e r a p e u t i c communication s k i l l s , such as empathic a c t i v e l i s t e n i n g . Due to the e v o l v i n g r e s p o n s i b i l i t y of c a r i n g f o r husbands with m u l t i p l e s c l e r o s i s i t i s c r i t i c a l t h a t nurses provide to c a r e g i v e r s ongoing r e c o g n i t i o n of t h i s s i g n i f i c a n t r o l e . Because women's i d e n t i t i e s are formed, to a la r g e extent, through the responses of oth e r s , t h i s acknowledgement would r e i n f o r c e to the c a r e g i v e r the s i g n i f i c a n c e of her r o l e , and consequently enhance s e l f - c o n f i d e n c e i n the performance of her c a r e g i v i n g r e s p o n s i b i l i t i e s . S i m i l a r l y , t a k i n g time to l i s t e n c l o s e l y to the c a r e g i v e r i n a non-judgmental manner may a s s i s t i n l e s s e n i n g the emotional burden and r e s u l t i n the f e e l i n g t h a t she i s understood and v a l u e d . I m p l i c a t i o n s f o r Nursing E d u c a t i o n The f i n d i n g s of t h i s study suggest t h a t the e d u c a t i o n of the p r o f e s s i o n a l nurse should i n c l u d e i n f o r m a t i o n that leads to awareness of c h r o n i c i l l n e s s as an event t h a t i n v o l v e s a l l f a m i l y members. T h i s study c l e a r l y showed that the r o l e of c a r e g i v i n g was o f t e n demanding and arduous, and t h a t the p r o v i s i o n of support to the wife was c l o s e l y l i n k e d to the p r o v i s i o n of support to the husband. Awareness of the c a r e g i v i n g experience and the unique q u a l i t i e s of t h i s experience can l e a d to a b e t t e r understanding of the support needs of i n d i v i d u a l c a r e g i v e r s . Nursing education should i n c o r p o r a t e the concept of c o l l a b o r a t i o n . A c o l l a b o r a t i v e r e l a t i o n s h i p between the nurse and c a r e g i v e r would i n c o r p o r a t e the knowledge of the nurse and the value system of the c a r e g i v e r . T h i s type of c o l l a b o r a t i v e e f f o r t has p o t e n t i a l to r e s u l t i n g r e a t e r c a r e g i v e r s a t i s f a c t i o n with s e r v i c e s p r o v i d e d . Nursing education t h a t focused on c o l l a b o r a t i o n would u l t i m a t e l y lead to r e s p e c t f o r the c a r e g i v e r ' s a b i l i t y to 130 make informed decisions suitable to his or her own best i n t e r e s t s . The educa t i o n of nurses should focus on the r o l e of nurses as i n f o r m a t i o n p r o v i d e r s and f a c i l i t a t o r s of c l i e n t d e c i s i o n s . I t i s o n l y when nurses are educated to g e n u i n e l y c o l l a b o r a t e with t h e i r c l i e n t s t h a t meaningful s u p p o r t i v e s e r v i c e s w i l l be p r o v i d e d . I m p l i c a t i o n s f o r Nursing Research T h i s study has focused on the p e r c e p t i o n s of support of c a r e g i v i n g wives. I t i s a beginning i n the understanding of s o c i a l support f o r c a r e g i v e r s ; much remains to be le a r n e d . The f i n d i n g s of t h i s study suggests s e v e r a l areas f o r f u r t h e r r e s e a r c h . In order to b u i l d on t h i s knowledge base, f u r t h e r r e s e a r c h c o u l d e x p l o r e p e r c e p t i o n s of s o c i a l support of c a r e g i v i n g wives d u r i n g v a r i o u s stages of the husband's i l l n e s s . T h i s study d i d not focus on the changing support needs of c a r e g i v e r s and i t i s l i k e l y t h a t p e r c e p t i o n s of support change over time. For example, the type and amount of i n f o r m a t i o n and p r a c t i c a l a s s i s t a n c e i s l i k e l y to v a r y depending on the stage of i l l n e s s . A n t i c i p a t o r y support may not be p e r c e i v e d as support f o r those wives who have reached the stage of using p r o f e s s i o n a l s e r v i c e s such as homemaker and r e s p i t e c a r e . F i n a l l y , the need f o r acknowledgement and understanding may be g r e a t e r at c e r t a i n s tages, such as f o l l o w i n g the d i a g n o s i s when both the c a r e g i v e r and f a m i l y members are d e a l i n g with adjustments to an u n c e r t a i n f u t u r e . Although support needs remain i n d i v i d u a l i s t i c t h i s i n f o r m a t i o n would provide nurses with knowledge of support needs over time. F i n d i n g s from t h i s study showed t h a t these wives i d e n t i f i e d i s s u e s around r e q u e s t i n g and r e c e i v i n g support. Not only d i d wives express d i s c o m f o r t around r e q u e s t i n g support but they d i d not p e r c e i v e a need f o r more p r a c t i c a l support than c u r r e n t l y being r e c e i v e d , i n s p i t e of the i d e n t i f i e d burdens. T h i s f i n d i n g r a i s e s a number of q u e s t i o n s . What i s the meaning wives give to r e q u e s t i n g support? Is r e q u e s t i n g support a l e a r n i n g process? I f so, what i s i n v o l v e d with t h i s process? What i s the meaning behind women's per c e i v e d lack of need f o r support i n s p i t e of the accompanying burdens? T h i s i n f o r m a t i o n i s c r u c i a l f o r h e a l t h care p r o f e s s i o n a l s whose primary f u n c t i o n i s the assessment and p r o v i s i o n of s p e c i f i c s u p p o r t i v e measures. F i n a l l y , r e s e a r c h e x p l o r i n g the h e a l t h care r e l a t i o n s h i p s between c a r e g i v e r s , care r e c e i v e r s , and nurses would provide v a l u a b l e i n f o r m a t i o n . Research of t h i s nature might shed some l i g h t on why these wives f r e q u e n t l y expressed d i s s a t i s f a c t i o n with the p r o f e s s i o n a l s e r v i c e s r e c e i v e d . These wives c l e a r l y i d e n t i f i e d hopeful e x p e c t a t i o n s t h a t h e a l t h p r o f e s s i o n a l s would meet t h e i r f u t u r e support needs, however they were 132 i n e v i t a b l y d i s a p p o i n t e d . Information t h a t would shed some l i g h t on t h i s concerning f i n d i n g would equip nurses with the i n f o r m a t i o n to provide more meaningful support. In c o n c l u s i o n , t h i s study has d e s c r i b e d the wives p e r c e p t i o n s of s o c i a l support while l i v i n g with and c a r i n g f o r husbands who have m u l t i p l e s c l e r o s i s . I t pro v i d e s i n s i g h t i n t o how some women see t h e i r r o l e as wives and c a r e g i v e r s , and c o n t r i b u t e s to understanding the meaning wives give to s o c i a l support. As well,^ i t pro v i d e s nurses with a d d i t i o n a l knowledge to use i n a s s e s s i n g , p l a n n i n g , and implementing s u p p o r t i v e s t r a t e g i e s . i i REFERENCES Adams, M. (1971). The compassion trap. In V. Gornick, & B. Moran (Eds.), Women in sexist society (pp. 555 -575). New York: Basic Books. Anderson,M. (1983). Thinking about women: Sociological  and feminist perspectives. New York: Macmillan. Archbold, P. (1980). Impact of parent caring on middle-aged offspring. Journal of Gerontological Nursing, 6(2), 78-85. Bardwick, J., & Douvan, E. 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Canadian J o u r n a l of N e u r o l o g i c a l S c i e n c e s , 13, 47-51. Waso, M. (1985). Chronic S c h i z o p h r e n i a and Alzheimer's Disease. J o u r n a l of Chronic Diseases, 3_8 (8), 711-716. Weiss, R. (1974). The p r o v i s i o n s of s o c i a l r e l a t i o n s h i p s . In Z. Rubin (Ed.), Doing unto others (pp. 17-26). New Je r s e y : P r e n t i c e - H a l l . 138 Whitlock, F., & S i s k i n d , M. (1980), Depression as a major symptom of m u l t i p l e s c l e r o s i s . J o u r n a l of Neurology, Neurosurgery and Psychiatry,, 43., 861-865. Z a r i t , J . , & Z a r i t , S. (1982). Measuring burden and support i n f a m i l i e s with Alzheimer's Disease e l d e r s . Paper presented a t the 35th Annual S c i e n t i f i c Meeting of the G e r o n t o l o g i c a l S o c i e t y of America, Boston, Massachusetts, United S t a t e s . 139 A P P E N D I X E S 140 APPENDIX A LETTER OF INFORMATION My name i s Toni S t o v e l . I am a r e g i s t e r e d nurse c u r r e n t l y working on my t h e s i s f o r the Master of Science i n n u r s i n g program a t the U n i v e r s i t y of B r i t i s h Columbia. I am e x p l o r i n g women's p e r c e p t i o n s of help r e c e i v e d while l i v i n g with a husband who has M u l t i p l e S c l e r o s i s . T h i s l e t t e r i s an i n v i t a t i o n f o r you to p a r t i c i p a t e i n t h i s study. You are under no o b l i g a t i o n to p a r t i c i p a t e and i f you choose to p a r t i c i p a t e you may withdraw from the study a t any time. The h e a l t h care you or your f a m i l y members r e c e i v e w i l l i n no way be a f f e c t e d by your d e c i s i o n to p a r t i c i p a t e or to not to p a r t i c i p a t e . I f you are i n t e r e s t e d i n s h a r i n g your p e r c e p t i o n s of the a s s i s t a n c e you r e c e i v e , or would l i k e to r e c e i v e , I would l i k e to meet with you p r i v a t e l y two or three times. We would meet e i t h e r i n your home or a t a p l a c e of convenience f o r you. Each i n t e r v e i w w i l l l a s t a pproximately 1-2 hours. On the i n i t i a l i n t e r v i e w I w i l l ask questions such as: What i s i t l i k e f o r you l i v i n g with a husband with M u l t i p l e S c l e r o s i s ? What are the t h i n g s / p e o p l e t h a t make a d i f f e r e n c e i n your day-to-day a c t i v i t i e s ? The second i n t e r v i e w w i l l be approximately s i x weeks l a t e r and w i l l be an o p p o r t u n i t y f o r you to c l a r i f y and expand on the i n f o r m a t i o n you i n i t i a l l y shared with me. Each i n t e r v i e w w i l l be audio-taped and subsequently typed. T h i s i s done so t h a t I may l i s t e n c l o s e l y to what you are s a y i n g without having to take notes. A l l i n f o r m a t i o n you share with me i s c o n f i d e n t i a l . Your name w i l l not be on the tapes. Access to the tapes and typed t r a n s c r i p t s w i l l be l i m i t e d to my t h e s i s a d v i s o r s and myself. You may request erasure of taped i n f o r m a t i o n at any time. A l l taped and typed t r a n s c r i p t s w i l l be destroyed upon completion of the study. A l l w r i t t e n m a t e r i a l a r i s i n g from t h i s study w i l l m aintain your anonymity. P a r t i c i p a t i o n i n t h i s study i s v o l u n t a r y . T h i s i n f o r m a t i o n w i l l l ead to improved h e a l t h care s e r v i c e s f o r women who provide care to husbands with M u l t i p l e S c l e r o s i s . P a r t i c i p a n t s w i l l be sent a summary upon completion of the study. In order to complete t h i s study I am l o o k i n g f o r E n g l i s h speaking women who are over twenty years of age, have husbands with M u l t i p l e S c l e r o s i s , but no other c h r o n i c i l l n e s s . APPENDIX B 142 INTERVIEW GUIDE 1. What i s i t l i k e f o r you l i v i n g with a husband who has M u l t i p l e S c l e r o s i s ? 2. How would you d e s c r i b e the r o l e of a wife whose husband has M u l t i p l e S c l e r o s i s ? 3. How do you see y o u r s e l f f i t t i n g i n t o t h i s r o l e ? 4. Are there p e o p l e / t h i n g s t h a t make a d i f f e r e n c e i n your d a i l y a c t i v i t i e s ? 5. Who/what helps you i n l i v i n g with someone who has M u l t i p l e S c l e r o s i s ? 6. Who/what hinders you i n l i v i n g with someone who has M u l t i p l e S c l e r o s i s ? 7. What does support mean to you? 8. How does support f i t i n t o your d a i l y a c t i v i t i e s ? 

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