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The family experience with chronic obstructive pulmonary disease Roberts, Della Kim 1985

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THE FAMILY EXPERIENCE WITH CHRONIC OBSTRUCTIVE PULMONARY DISEASE By DELLA KIM ROBERTS B . S c , The U n i v e r s i t y of A l b e r t a , 1978 THESIS SUBMITTED IN PARTIAL FULFILLMENT THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING i n THE FACULTY OF GRADUATE STUDIES (School of Nurs ing) We accept t h i s t h e s i s as conforming to the r e q u i r e d s tandard THE UNIVERSITY OF BRITISH COLUMBIA August 1985 © D e l i a Kim R o b e r t s , 1985 In presenting t h i s thesis i n p a r t i a l f u l f i l m e n t of the requirements for an advanced degree at the University of B r i t i s h Columbia, I agree that the Library s h a l l make i t f r e e l y available for reference and study. I further agree that permission for extensive copying of t h i s thesis for scholarly purposes may be granted by the head of my department or by h i s or her representatives. I t i s understood that copying or publication of t h i s thesis for f i n a n c i a l gain s h a l l not be allowed without my written permission. Department of Nursing  The University of B r i t i s h Columbia 1956 Main Mall Vancouver, Canada V6T 1Y3 ABSTRACT The Fami ly Exper ience with COPD T h i s study was des igned to gain an under s t and ing of the f a m i l y exper ience when an a d u l t member has c h r o n i c o b s t r u c t i v e pulmonary d i sea se (COPD). I t i s r e c o g n i z e d t h a t i l l n e s s w i t h i n the f a m i l y a f f e c t s the w e l l - b e i n g of the f a m i l y u n i t and the h e a l t h of a l l members. To understand the impact of COPD upon the f a m i l y , however, the l i t e r a t u r e p r o v i d e s only knowledge of the exper ience of the i n d i v i d u a l who has COPD and the spouse , not t h a t of the f a m i l y u n i t . Thus , the purpose of t h i s study was to d e s c r i b e and e x p l a i n the COPD exper i ence from the p e r s p e c t i v e of the f a m i l y u n i t . A q u a l i t a t i v e method, phenomenology, was chosen f o r t h i s i n v e s t i g a t i o n . Data were c o l l e c t e d through s e m i - s t r u c t u r e d i n t e r v i e w s with e i g h t f a m i l i e s who shared t h e i r e x p e r i e n c e s . From the conten t a n a l y s i s of these d a t a , three themes t h a t were common throughout the f a m i l i e s ' accounts were i d e n t i f i e d and developed to d e s c r i b e and e x p l a i n f a m i l y l i f e wi th COPD. The f i r s t theme, d i s e a s e - d i c t a t e d f a m i l y l i f e , d e s c r i b e s four a spects of a common l i f e s t y l e tha t i s imposed on the f a m i l y by the c h a r a c t e r i s t i c s of COPD. The second theme, i s o l a t i o n , d e s c r i b e s the i s o l a t i o n t h a t accompanies the i l l n e s s e x p e r i e n c e , f o r the f a m i l y group and the i n d i v i d u a l members w i t h i n the group. The f i n a l theme, f a m i l y work, d e s c r i b e s the four pr imary c h a l l e n g e s the f a m i l i e s face and the cop ing s t r a t e g i e s they use to deal with them. i i i These f i n d i n g s r e v e a l e d tha t COPD acts as an i n t e n s e s t r e s s o r w i t h i n the f a m i l y , r e q u i r i n g e x t e n s i v e f a m i l y work to cope with COPD i n a way t h a t ma in ta ins the w e l l - b e i n g of the f a m i l y u n i t . F u r t h e r m o r e , i t was found t h a t l i v i n g with COPD i n many ways i n h i b i t s the re sources w i t h i n the f a m i l y and those e x t e r n a l sources of support t h a t f o s t e r the f a m i l y ' s a b i l i t y to manage the s t r e s s a s s o c i a t e d wi th l i v i n g wi th COPD. 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 and n u r s i n g r e s e a r c h were d e l i n e a t e d i n l i g h t of the r e s e a r c h f i ndi ngs . i v TABLE OF CONTENTS Page ABSTRACT i i TABLE OF CONTENTS i v LIST OF FIGURES v i ACKNOWLEDGEMENTS v i i CHAPTER ONE: I n t r o d u c t i o n 1 Background 2 Conceptual Framework 5 Problem Statement 7 D e f i n i t i o n of Terms 8 M e t h o d o l o g i c a l P e r s p e c t i v e 8 Phenomenological Method 9 Assumptions 11 L i m i t a t i o n s 12 Summary 13 CHAPTER TWO: Review of S e l e c t e d L i t e r a t u r e 14 Fami ly In f lue nce on the I n d i v i d u a l wi th COPD . . . . 14 T h e o r e t i c a l P e r s p e c t i v e s 14 Research S tud ie s of I n d i v i d u a l s with COPD . . . . 16 In f luence of COPD on the Fami ly 21 T h e o r e t i c a l P e r s p e c t i v e s of the Impact of C h r o n i c I l l n e s s on the Fami ly 21 Review of C u r r e n t Research Base to Understand the Fami ly Exper i ence wi th COPD 25 Summary 31 CHAPTER THREE: Methodology 32 S e l e c t i o n of P a r t i c i p a n t s 32 C r i t e r i a fo r S e l e c t i o n 32 S e l e c t i o n Procedure 34 D e s c r i p t i o n of P a r t i c i p a n t F a m i l i e s 35 Compos i t ion of the f a m i l y groups 35 C h a r a c t e r i s t i c s of the i l l a d u l t s 36 C h a r a c t e r i s t i c s of the f a m i l y members 36 C u l t u r a l c h a r a c t e r i s t i c s 36 Data C o l l e c t i o n 37 Data A n a l y s i s 39 E t h i c a l C o n s i d e r a t i o n s 40 Summary 42 V CHAPTER FOUR: F a m i l i e s ' Accounts 43 D i s e a s e - D i c t a t e d Fami ly L i f e 44 A. Fami ly L i f e w i t h i n a B r e a t h e r - P r o t e c t e d Environment 45 B. Fami ly L i f e w i t h i n an Energy Economy 48 C. Fami ly L i f e w i t h i n a Pre sent -T ime O r i e n t a t i o n . 49 D. A l t e r e d Roles w i t h i n the Fami ly 52 I s o l a t i o n 55 A. I s o l a t i o n f o r the Fami ly Group ,-• 55 B. I s o l a t i o n of I n d i v i d u a l Members w i t h i n the Fami ly 68 Fami ly Work 75 A. A c c e p t i n g the C h r o n i c Nature of COPD 75 B. F a c i n g an U n c e r t a i n Future 80 C. M a i n t a i n i n g a S a t i s f y i n g Shared Fami ly L i f e . 85 D. Managing the I l l n e s s 91 Summary 96 CHAPTER F I V E : D i s c u s s i o n and I m p l i c a t i o n s 98 S t r e s s o r of COPD 98 Impact of COPD on Fami ly Resources 107 I n t e r n a l Fami ly Resources 107 E x t e r n a l Fami ly Resources I l l Nurs ing I m p l i c a t i o n s 120 I m p l i c a t i o n s f o r Nur s ing P r a c t i c e 120 Decrea s ing the s t r e n g t h of the s t r e s s o r exer ted by COPD 120 S t r e n g t h e n i n g the f a m i l y ' s r e sources to deal with COPD 122 I m p l i c a t i o n s f o r Nurs ing Research 125 Summary 126 CHAPTER SIX: Summary and C o n c l u s i o n s 128 Summary 128 C o n c l u s i o n s 131 BIBLIOGRAPHY 134 APPENDICES 141 Appendix A: P h y s i c i a n Consent Form 141 Appendix B: I n t r o d u c t o r y L e t t e r 142 Appendix C: Fami ly Consent Form 143 Appendix D: In terv iew Guide 144 vi LIST OF FIGURES F i g u r e Page 1. The Meaning of L i v i n g wi th COPD for the Fami ly . . . . 97 V I 1 ACKNOWLEDGEMENTS I would l i k e to thank the p r o f e s s o r s who were the members of my t h e s i s committee , V i r g i n i a Hayes ( C h a i r p e r s o n ) and C l a r i s s a Green fo r the p o s i t i v e atmosphere t h a t supported me through the process of my r e s e a r c h : t h e i r e x p e r t i s e , t h e i r gu idance , and t h e i r humour. For s h a r i n g an i n t i m a t e par t of t h e i r l i v e s with me, I would l i k e to express my thanks to the e i g h t f a m i l i e s who p a r t i c i p a t e d i n my s t u d y . I would a l so l i k e to g r a t e f u l l y acknowledge the Canadian Nurses ' R e s p i r a t o r y S o c i e t y and the Canadian Lung A s s o c i a t i o n f o r the generous f e l l o w s h i p tha t helped to support my m a s t e r ' s educa t ion and my r e s e a r c h . F i n a l l y , I wish to thank my p a r t n e r , P a t , f o r h i s s u p p o r t , i n s i g h t , and ongoing b e l i e f i n my work. CHAPTER ONE I n t r o d u c t i on With improved c o n t r o l of communicable d i s e a s e s , c h r o n i c i l l n e s s e s now r e p r e s e n t the pr imary c h a l l e n g e to h e a l t h care i n Canada ( L a l o n d e , 1974) . For those a f f l i c t e d with a c h r o n i c i l l n e s s , l i f e becomes " i r r e v o c a b l y d i f f e r e n t " (Feldman, 1974, p. 289) . However, i t i s not s o l e l y the l i f e of the i n d i v i d u a l t h a t changes ; because the f a m i l y i s the pr imary s o c i a l u n i t , i t i s here t h a t the c h r o n i c i l l n e s s o c c u r s , i s managed, and the accompanying changes are f e l t ( L i t m a n , 1974) . When faced with the r e a l i t y of c h r o n i c i l l n e s s , some f a m i l i e s not only adapt to the i n e v i t a b l e changes , but grow and u n i f y i n the p r o c e s s . Others do n o t , unable to e f f e c t i v e l y manage the demands of the i l l n e s s w h i l e m a i n t a i n i n g the w e l l - b e i n g of the f a m i l y u n i t ( L e n i h a n , 1981; McCubbin , 1979) . Throughout a l l areas of p r a c t i c e , nurses have o p p o r t u n i t i e s to help f a m i l i e s f i n d more s a t i s f y i n g ways to l i v e with c h r o n i c i l l n e s s . An under s t and ing of the impact of the i l l n e s s upon the f a m i l y , however, i s needed to p rov ide a t h e o r e t i c a l base from which to p lan a p p r o p r i a t e and e f f e c t i v e n u r s i n g c a r e . Toward t h i s end, t h i s study exp lo red the f ami ly exper i ence of l i v i n g with one of the most p r e v a l e n t of the c h r o n i c i l l n e s s e s , c h r o n i c o b s t r u c t i v e pulmonary d i sea se (COPD). T h i s chapter i n t r o d u c e s the re search by: d e s c r i b i n g the n u r s i n g contex t of the problem, e x p l a i n i n g the framework 2 g u i d i n g the r e s e a r c h , o u t l i n i n g the s p e c i f i c r e sea rch ques t ions addre s sed , and d e s c r i b i n g the methodo log i ca l p e r s p e c t i v e chosen to exp lo re these q u e s t i o n s . Background C h r o n i c o b s t r u c t i v e pulmonary d i s e a s e , the f o u r t h most p r e v a l e n t c h r o n i c d i sea se of a d u l t s in Canada, r e p r e s e n t s the f i f t h l e a d i n g cause of death fo r men and the e l e v e n t h fo r women (Hea l th and Welfare Canada, 1982, p. 9, 20 ) . Al though m o r t a l i t y r e l a t e d to a l l d i s ea se s of the r e s p i r a t o r y system has d e c l i n e d i n the p r e v i o u s decade, m o r t a l i t y r e l a t e d to the c h r o n i c r e s p i r a t o r y d i sea se s has r i s e n , i n c r e a s i n g by 34.2% for women and 9.2% for men (Hea l th and Welfare Canada, 1982, p. 2 ) . The l a b e l "COPD" i s used to d e s c r i b e those d i sea se s c h a r a c t e r i z e d by i n c r e a s e d r e s i s t a n c e to a i r f l o w . In a d u l t s , t h i s i n c l u d e s c h r o n i c asthma, c h r o n i c b r o n c h i t i s , and emphysema (Hodgkin , 1979) . T y p i c a l l y such d i sea se s occur toge ther i n v a r y i n g degrees of s e v e r i t y , and r e s u l t i n shor tnes s of b r e a t h , l i m i t e d energy , and p r o g r e s s i v e d i s a b i l i t y (Hodgk in , 1979; West, 1977) . The onset of the d i sea se i s g r a d u a l . As a r e s u l t , s i g n i f i c a n t lung damage has a l r eady o c c u r r e d by the time symptoms prompt the i n d i v i d u a l to seek t reatment ( P e t t y , 1978). Because the lung damage i s i r r e v e r s i b l e , medica l t rea tment i s aimed at symptomatic r e l i e f , p r e v e n t i o n of f u r t h e r impai rment , and r e h a b i l i t a t i o n to d e r i v e maximum p o t e n t i a l from the p e r s o n ' s remaining lung f u n c t i o n (Haas, P i n e d a , Haas & 3 Axen, 1979) . For the s u f f e r e r s , l i v i n g with COPD means c o n s t a n t l y b a l a n c i n g b r e a t h i n g and energy r e s e r v e s , to avo id the t h r e a t e n i n g s e n s a t i o n of b r e a t h l e s s n e s s (Sexton , 1981; T r a v e r , 1982). As i t i s p r i m a r i l y people i n t h e i r m i d - y e a r s , f o r t i e s to s i x t i e s , who develop the l i m i t i n g symptoms of COPD, many are f o r c e d to leave t h e i r jobs before the time planned f o r r e t i r e m e n t (Dudley , G l a s e r , Jorgenson & Logan, 1980) . In f a c t , i n 1977, o b s t r u c t i v e lung d i sea se s accounted fo r the second l e a d i n g reason people r e c e i v e d d i s a b i l i t y b e n e f i t s i n the Uni ted S ta te s (Kass , 1978, p. 7 ) . R e c o g n i z i n g t h a t women working i n the home are exc luded from r e c e i v i n g these b e n e f i t s , the d i s a b i l i t y from COPD i s a c t u a l l y g r e a t e r than these s t a t i s t i c s i n d i c a t e . The symptoms of COPD not only a f f e c t the a b i l i t y to be employed; a b i l i t i e s to c a r r y out many o ther a spects of everyday l i f e are a l s o a f f e c t e d , such as the a b i l i t y to s o c i a l i z e , t r a v e l , p a r t i c i p a t e i n f a m i l y a c t i v i t i e s , f u l f i l l household t a s k s , and i f s e v e r e , even engage i n c o n v e r s a t i o n (Chalmers , 1984) . The impact of COPD, t h e r e f o r e , i s not c o n f i n e d to the v i c t i m a l o n e . The e f f e c t s are f e l t by the e n t i r e f a m i l y . The i l l n e s s a f f e c t s the h e a l t h of a l l f a m i l y members and the f u n c t i o n i n g of the f a m i l y u n i t i t s e l f . To view COPD w i t h i n t h i s broader f a m i l y contex t i s then to view the f a m i l y as a focus fo r h e a l t h care and t h e r a p e u t i c i n t e r v e n t i o n , whether the " c l i e n t " i s one f a m i l y member or the e n t i r e group (Green , 1982) . 4 The long- te rm p r o g r e s s i v e nature and the r e c u r r e n t e x a c e r b a t i o n s t y p i c a l of COPD b r i n g the i l l member i n t o f requent c o n t a c t with the h e a l t h care system, i n h o s p i t a l s , c l i n i c s , and i n t h e i r homes. Nurses p r a c t i c e i n a l l these a r e a s , so are p r o v i d e d with many o p p o r t u n i t i e s to a s s i s t these i n d i v i d u a l s and t h e i r f a m i l i e s i n meeting the c h a l l e n g e s tha t accompany l i f e with COPD. Yet from the a u t h o r ' s exper i ence of c a r i n g fo r i n d i v i d u a l s with COPD i n the h o s p i t a l and community, i t appears t h a t the f a m i l y seldom becomes a focus of n u r s i n g i n t e r v e n t i o n ; r a t h e r , the f a m i l y u n i t i s c o n s i d e r e d p r i m a r i l y as an environment tha t i n f l u e n c e s the t reatment regime and h e a l t h s t a tu s of the i l l member. I t seems t h a t nurses r a r e l y a t t end to the f a c t t h a t the i l l n e s s r e c i p r o c a l l y i n f l u e n c e s the f a m i l y . Thus , the needs of the f a m i l y u n i t are even l e s s f r e q u e n t l y addre s sed . To promote and d e l i v e r f a m i l y - f o c u s e d care to f a m i l i e s with COPD, nurses r e q u i r e an under s tand ing of how the d i sea se a f f e c t s f a m i l y l i f e . Y e t , an indepth under s t and ing of t h i s exper ience cannot be gained from the c u r r e n t l i t e r a t u r e , f o r the f a m i l y exper ience wi th COPD has been v i r t u a l l y u n e x p l o r e d . F u r t h e r , from the a u t h o r ' s p e r s p e c t i v e , what l i t e r a t u r e does e x i s t i s p r i m a r i l y i m p r e s s i o n i s t i c r a t h e r than re sea rch based. I t i s p r o v i d e d from the p e r s p e c t i v e of h e a l t h care p r o f e s s i o n a l s who have worked with i n d i v i d u a l s and f a m i l i e s with COPD, r a t h e r than based upon re sea rch from the p e r s p e c t i v e of the f a m i l i e s who l i v e wi th COPD themse lves . 5 To begin to address the need fo r knowledge of the f a m i l y exper ience with COPD, t h i s study was des igned to exp lo re the f a m i l y exper ience when an a d u l t member has COPD, as d e s c r i b e d and e x p l a i n e d by the f a m i l y u n i t . Fur thermore , such i n s i g h t i s seen to c o n t r i b u t e to the under s t and ing of the exper i ence s common to a l l f a m i l i e s wi th a c h r o n i c a l l y i l l member. The f o l l o w i n g s e c t i o n e x p l a i n s the conceptua l framework used to guide t h i s i n v e s t i g a t i o n . Conceptual Framework Symbolic i n t e r a c t i o n theory p r o v i d e s the founda t ion fo r the conceptua l framework. The f o l l o w i n g d e s c r i p t i o n e x p l a i n s t h i s p e r s p e c t i v e of the f a m i l y i l l n e s s exper ience as c r e a t e d through the i n t e r a c t i o n of the f a m i l y members with each o ther and with those i n t h e i r env i ronment . From the p e r s p e c t i v e of symbol ic i n t e r a c t i o n i s m , s o c i a l l i f e i s seen to be c o n s t r u c t e d through a process of i n t e r a c t i o n between i n d i v i d u a l s ( L i n d e s m i t h , S t raus s & D e n z i n , 1975; S t r y k e r , 1980) . Through t h i s i n t e r a c t i v e p r o c e s s , people g ive meaning to o b j e c t s and s i t u a t i o n s they e n c o u n t e r . These o b j e c t s or s i t u a t i o n s are seen as h o l d i n g no i n h e r e n t meaning for an i n d i v i d u a l ; the meaning a r i s e s out of the way the o b j e c t i s d e f i n e d by those with whom tha t i n d i v i d u a l i n t e r a c t s (Blumer , 1969) . Thus , people t r ans form meaning i n l i g h t of the a c t i o n s of o ther s and t h e i r own prev ious e x p e r i e n c e . T h i s i n t e r p r e t e d meaning then ac t s as the ba s i s fo r a c t i o n (Blumer, 6 1969) . As i n t e r a c t i o n i n v o l v e s r e c i p r o c a l l y i n f l u e n c e d b e h a v i o u r , s o c i a l i n t e r a c t i o n i s more a p p r o p r i a t e l y c o n s i d e r e d the c r e a t o r of b e h a v i o u r , not s imply a form of i t s e x p r e s s i o n (Blumer, 1969; Lauer & H a n d e l , 1977). Blumer summarized symbol ic i n t e r a c t i o n i n three b a s i c p remise s : humans ac t toward t h i n g s on the ba s i s of the meanings those t h i n g s have fo r them; meanings emerge through s o c i a l i n t e r a c t i o n ; and, meanings are m o d i f i e d and d e a l t wi th through an i n t e r p r e t a t i v e process used by persons i n d e a l i n g with those t h i n g s they encounter (Blumer , 1969) . In r e l a t i o n to the f a m i l y with COPD, the meaning of the i l l n e s s for the f a m i l y i s c r e a t e d through the s o c i a l i n t e r a c t i o n of the f a m i l y members. As the i n d i v i d u a l members i n d i c a t e t h e i r i n t e r p r e t a t i o n s of the s i t u a t i o n to each o t h e r , a c o l l e c t i v e d e f i n i t i o n of the s i t u a t i o n forms. The f a m i l y ' s d e f i n i t i o n of the s i t u a t i o n i s seen to be q u a l i t a t i v e l y d i f f e r e n t than the d e f i n i t i o n of an i n d i v i d u a l member. Each member c o n t r i b u t e s to t h i s i n t e g r a t e d v iew. The shared c o n s t r u c t i s a product of the group (Blumer, 1969). Through a process of i n t e r p r e t a t i o n and i n t e r a c t i o n , the i n d i v i d u a l members' a c t i o n s are i n f l u e n c e d by the c o l l e c t i v e v iew. That i s to say, the members of the f a m i l y f i t t h e i r a c t i o n s in l i n e with each o t h e r ; t h e i r j o i n t a c t i o n i s f a m i l y behav iour (Blumer , 1969) . From t h i s p e r s p e c t i v e , the shared f a m i l y c o n s t r u c t serves to shape the f a m i l y ' s p a r t i c u l a r p a t t e r n or behav iour ( R e i s s , 1981) . Given t h i s framework, an indepth under s t and ing of the 7 f a m i l y exper ience must i n c o r p o r a t e the s u b j e c t i v e as wel l as the o b j e c t i v e dimensions ( S t r y k e r , 1980) . The s i t u a t i o n c o n f r o n t i n g the f a m i l y i s the o b j e c t i v e a s p e c t ; and, the meaning of the s i t u a t i o n fo r the f a m i l y i s the s u b j e c t i v e a s p e c t . To ach ieve an under s t and ing of the f a m i l y exper ience with COPD, the s u b j e c t i v e d imens ion , how the f a m i l y members d e s c r i b e t h e i r s i t u a t i o n and how they act i n l i g h t of t h i s i n t e r p r e t a t i o n , must be sought . Thus , the f a m i l y g roup ' s d e s c r i p t i o n and e x p l a n a t i o n became the focus of t h i s study of the f a m i l y exper i ence with COPD. Problem Statement C h r o n i c o b s t r u c t i v e pulmonary d i sea se r e p r e s e n t s a h e a l t h problem to the f a m i l y as wel l as to the i l l i n d i v i d u a l . The way the d i sea se a f f e c t s the f a m i l y u n i t , however, has not been p r e v i o u s l y s t u d i e d . To deepen the under s t and ing of t h i s e x p e r i e n c e , the r e sea rch addresses the f o l l o w i n g q u e s t i o n s : What i s d a i l y l i f e l i k e fo r f a m i l i e s i n which an a d u l t member has COPD? How do f a m i l i e s respond to the demands of the i l l n e s s ? The d e s c r i p t i o n and e x p l a n a t i o n of the exper ience from the p e r s p e c t i v e of the f a m i l y group p r o v i d e s an under s t and ing p r a c t i t i o n e r s can use t o : a n t i c i p a t e p o t e n t i a l f a m i l y problems , i d e n t i f y r e source s tha t enhance the cop ing a b i l i t i e s of these f a m i l i e s , and p r o v i d e care t h a t promotes the w e l l - b e i n g of the f a m i l y u n i t and the h e a l t h of a l l members. 8 D e f i n i t i o n of Terms For the purpose of t h i s study the f o l l o w i n g d e f i n i t i o n s a p p l y : C h r o n i c o b s t r u c t i v e pulmonary d i sea se (COPD): P e r s i s t e n t a i r f l o w o b s t r u c t i o n which cannot be c o m p l e t e l y r e v e r s e d with b r o n c h o d i 1 a t o r s or o ther t reatment ( T r a v e r , 1975, p . 1778). A d u l t wi th COPD: An a d u l t wi th a medical d i a g n o s i s of c h r o n i c o b s t r u c t i v e pulmonary d i s e a s e . F a m i l y : Those persons the a d u l t with COPD i d e n t i f i e s as h i s / h e r f a m i l y . Guided by the symbol ic i n t e r a c t i o n i s t framework, an a p p r o p r i a t e re search methodology fo r t h i s study i s one tha t e x p l o r e s the d i v e r s e nature of the exper i ence from the s u b j e c t i v e p e r s p e c t i v e of those i n v o l v e d . The f o l l o w i n g s e c t i o n e x p l a i n s the t h e o r e t i c a l b a s i s of phenomenology, an i n t e r p r e t i v e r e sea rch approach , which was chosen to accompl i sh t h i s goal . M e t h o d o l o g i c a l P e r s p e c t i v e Two d i s t i n c t paradigms of s c i e n t i f i c i n q u i r y c o n t r i b u t e to the knowledge of human b e h a v i o u r , the q u a n t i t a t i v e method and the q u a l i t a t i v e method. The q u a n t i t a t i v e method attempts to v e r i f y p r e c o n c e i v e d hypothese s . The purpose i s to d i s c o v e r the o b j e c t i v e determinants of p a r t i c u l a r phenomena, as a ba s i s for p r e d i c t i o n (Schwartz & J acobs , 1979) . C o n v e r s e l y , q u a l i t a t i v e r e sea rch i s a d e s c r i p t i v e method a p p l i e d to study and d e s c r i b e 9 human exper ience as i t i s l i v e d . The purpose i s to deepen the under s t and ing of the phenomena under i n v e s t i g a t i o n ( G i o r g i , 1975) . I t i s from two d i f f e r e n t wor ld p e r s p e c t i v e s tha t these methods approach the development of knowledge. D i f f e r e n t p h i l o s o p h i c a l assumptions a l s o under ly each approach . In c o n t r a s t to the assumption of the q u a n t i t a t i v e method t h a t " t h e r e e x i s t s d e f i n a b l e and q u a n t i f i a b l e ' s o c i a l f a c t s ' . . . o u t s i d e and independent of the exper i ence of any p a r t i c u l a r i n d i v i d u a l " ( R i s t , 1979, p . 17) , the q u a l i t a t i v e paradigm assumes tha t the only r e a l i t y i s the r e a l i t y of the person who has the exper i ence ( O i l e r , 1982; Schwartz & J acobs , 1979). The s u b j e c t i v e p e r s p e c t i v e i s e s s e n t i a l to unders tand the behav iour tha t can be observed o b j e c t i v e l y . The p e r s p e c t i v e of q u a l i t a t i v e methodology i s c o n c e p t u a l l y compat ib le with the t h e o r e t i c a l framework of symbol ic i n t e r a c t i o n i s m tha t guides t h i s i n v e s t i g a t i o n . T h e r e f o r e phenomenology, a q u a l i t a t i v e r e sea rch method, was chosen to exp lore the re search q u e s t i o n s . A d e s c r i p t i o n of the method of phenomenology f o l l o w s . Phenomenological Method The phenomenological method, developed by Edmund H u s s e r l , a l lows the r e s e a r c h e r to e x p l o r e phenomena as they are l i v e d and e x p e r i e n c e d (Knaack, 1984). The task of the i n v e s t i g a t o r i s to ach ieve an under s t and ing of an exper ience from the s u b j e c t i v e p e r s p e c t i v e of those i n v o l v e d , and from t h i s ba s i s develop a r i c h , f u l l d e s c r i p t i o n tha t p r o j e c t s the sense of t h i s exper ience to o ther s (Ornery, 1983). The r e s e a r c h e r i s t h e r e f o r e the main ins t rument of the phenomenological i n v e s t i g a t i o n , e n t e r i n g i n t o the r e sea rch process i t s e l f and i n t e r p r e t i n g the exper ience as i t appears to the people engaged in i t ( D a v i s , 1978). The r e s e a r c h e r ' s d i r e c t involvement r e f l e c t s the ep i s tomology of q u a l i t a t i v e r e s e a r c h , tha t i s , " the r e s e a r c h e r must p a r t i c i p a t e i n the mind of the o ther i n order to a c q u i r e s o c i a l knowledge, and tha t face to face i n t e r a c t i o n promotes the f u l l e s t p a r t i c i p a t i o n " ( L o f l a n d , 1984, p . 12) . Q u a l i t a t i v e re search i s r e c o g n i z e d as a s o c i a l a c t , an i n t e r a c t i o n between the r e s e a r c h e r and the p a r t i c i p a n t s . As such , the i n t e n t i s not to e l i m i n a t e the b ia s of the r e s e a r c h e r , but to r e c o g n i z e i t and i n c o r p o r a t e i t i n t o the process ( D a v i s , 1978) . The r e s e a r c h e r employs d e s c r i p t i v e methods to i n v e s t i g a t e the exper ience and communicate i t ( C o l a i z z i , 1978) . To do so i n a way tha t remains l o y a l to the p a r t i c i p a n t s ' p e r s p e c t i v e , the r e s e a r c h e r must acknowledge p r e c o n c e i v e d e x p e c t a t i o n s and s t r i v e to set these a s i d e . In t h i s way, predetermined c a t e g o r i e s or frameworks are not a p p l i e d to the e x p e r i e n c e ; r a t h e r , the meanings i d e n t i f i e d are those tha t emerge from the p a r t i c i p a n t s ' d e s c r i p t i o n s (Ornery, 1983). T h i s goal i s pursued through a process of c o n t i n u a l c l a r i f i c a t i o n and v a l i d a t i o n of the r e s e a r c h e r ' s i n t e r p r e t a t i o n s with the d e s c r i b e r s . A d e s c r i p t i o n true to the exper ience can then be developed (Ornery, 1983) . Grea te r i n s i g h t i n t o the process of a n a l y z i n g 11 the data w i l l be p r o v i d e d i n the methodology chapter (see Chapter T h r e e ) . Phenomenology i s seen to be an a p p r o p r i a t e re search method g iven not only the re search ques t ions of t h i s i n v e s t i g a t i o n , but a l so the i n h e r e n t nature of n u r s i n g p r a c t i c e . Nurs ing i n v o l v e s s o c i a l a c t i o n , t h e r e f o r e , knowledge i n t e g r a l to n u r s i n g p r a c t i c e i s tha t which enables the p r a c t i t i o n e r to b e t t e r unders tand the c l i e n t ' s exper ience ( D a v i s , 1978) . T h i s i s the knowledge generated by the phenomenological approach . Thus , phenomenology i s seen to be a v a l u a b l e method f o r the i n v e s t i g a t i o n of t h i s n u r s i n g problem. Assumpti ons Throughout the process of the r e sea rch s tudy , the r e s e a r c h e r acted upon some fundamental a s sumpt ions . I t i s assumed t h a t : The f a m i l y i s the pr imary s o c i a l u n i t (Goode, 1964) , and as such serves two c e n t r a l f u n c t i o n s : 1) to meet the needs of i t s i n d i v i d u a l members, and 2) to meet the needs of the s o c i e t y of which i t i s a pa r t (Fr iedman, 1981). The i l l n e s s of an a d u l t member wi th COPD a f f e c t s the d a i l y l i f e of the f a m i l y , and the f u n c t i o n i n g of the f a m i l y u n i t ( L i t m a n , 1974) . The i l l n e s s exper i ence c o n s t r u c t e d by the f a m i l y members as a group r e p r e s e n t s the f a m i l y e x p e r i e n c e . The p e r s p e c t i v e p r o v i d e d by the f a m i l y u n i t i s u n i q u e , and i s not a v a i l a b l e from any one member or group of members of the f a m i l y 12 (Blumer, 1969; R e i s s , 1981) . The d e s c r i p t i o n r e s u l t i n g from the re sea rch r e p r e s e n t s the views of the p a r t i c i p a n t f a m i l i e s and t h e i r c u l t u r e ( G i o r g i , 1975) . L i mi t a t i ons Because the r e sea rch f i n d i n g s r e f l e c t the views of the p a r t i c i p a n t f a m i l i e s , the study i s l i m i t e d by the c h a r a c t e r i s t i c s of the f a m i l i e s who p a r t i c i p a t e d i n the study (see Chapter T h r e e , pp. 35-36) . The d e s c r i p t i o n of the f a m i l y exper ience of l i v i n g wi th COPD may be l i m i t e d , f o r example, by the f o l l o w i n g c h a r a c t e r i s t i c s of the r e s e a r c h group: p r i m a r i l y Anglo-Saxon e t h n i c background; access to s p e c i f i c h e a l t h c a r e , such as a medical s p e c i a l i s t and a r e s p i r a t o r y r e h a b i l i t a t i o n program, and the p o s i t i o n of the i l l a d u l t s w i t h i n the f a m i l i e s , be ing a member of the m a r i t a l couple r a t h e r than an a d u l t c h i l d or an e l d e r p a r e n t . In a d d i t i o n , data c o l l e c t i o n was c o n s t r a i n e d by the l i m i t a t i o n of c o m p l e t i n g the r e s e a r c h i n v e s t i g a t i o n w i t h i n a r e s t r i c t e d time p e r i o d . F u r t h e r i n t e r v i e w s wi th the f a m i l i e s may have ach ieved a g r e a t e r depth of under s t and ing and ach ieved s a t u r a t i o n of the themes developed from the d a t a , thereby e n r i c h i n g the d e s c r i p t i o n and e x p l a n a t i o n of the f a m i l y exper ience with COPD. Summary T h i s i n t r o d u c t o r y chapter began by d e s c r i b i n g the n u r s i n g c o n t e x t of the re search problem, thereby e x p l a i n i n g the r a t i o n a l e and purpose of the s tudy . To complete the i n t r o d u c t i o n , the conceptua l framework, the re search ques t ions the methodo log i ca l p e r s p e c t i v e , the a s sumpt ions , and l i m i t a t i o n s of the study were addres sed . The next chapter p r o v i d e s a review of l i t e r a t u r e p e r t i n e n t to the i n v e s t i g a t i o n CHAPTER TWO Review of S e l e c t e d L i t e r a t u r e T h i s chapter examines p e r t i n e n t t h e o r e t i c a l p e r s p e c t i v e s and re search s t u d i e s i n order to p lace t h i s i n v e s t i g a t i o n w i t h i n the contex t of c u r r e n t l i t e r a t u r e . The l i t e r a t u r e reviewed was s e l e c t e d on the ba s i s of an i n t e r a c t i o n a l view of i l l n e s s , t h a t i s , a p e r s p e c t i v e t h a t views the d i s e a s e , the i l l p e r s o n , and the f a m i l y as r e c i p r o c a l l y i n f l u e n c i n g elements of the i l l n e s s exper ience ( L e w i s , 1976; Verwoerdt , 1972) . From t h i s p e r s p e c t i v e , the review of s e l e c t e d l i t e r a t u r e i s o r g a n i z e d i n two main p a r t s : 1) the i n f l u e n c e of the f a m i l y on the i n d i v i d u a l with COPD, and 2) the impact of COPD upon the f a m i l y . Fami ly In f luence on the I n d i v i d u a l with COPD In seek ing to unders tand the i n f l u e n c e of the f a m i l y upon a member with COPD, i t i s u se fu l to f i r s t examine the t h e o r e t i c a l p e r s p e c t i v e s of a f a m i l y ' s i n f l u e n c e on a member with any i l l n e s s , and then more s p e c i f i c a l l y review the re search c o n c e r n i n g the f a m i l y i n which a member has COPD. T h e o r e t i c a l P e r s p e c t i v e s I t i s w i d e l y acknowledged t h a t the f a m i l y ac t s as a pr imary i n f l u e n c e upon an i n d i v i d u a l ' s a d a p t a t i o n to i l l n e s s ( L i t m a n , 1974; Mauskch, 1974; Schontz , 1975; Wright & Leahey, 1984) . T h i s i n f l u e n c e i s expressed i n two main ways: as a f a c t o r i n f l u e n c i n g the p e r c e p t i o n of i l l n e s s , and as a p o t e n t i a l l y s u p p o r t i v e or d i s r u p t i v e f a c t o r i n the a d a p t a t i o n to i l l n e s s . Both these aspects are addressed i n the f o l l o w i n g p r e s e n t a t i on . People a t t a c h meanings to t h e i r exper i ence s ( B l a c k , 1983) . When i l l , people a c t i v e l y d e f i n e the meaning t h e i r i l l n e s s holds fo r them. T h i s meaning then ac t s as a major determinant in t h e i r response (Nerentz & L e v e n t h a l , 1983) . Many f a c t o r s c o n t r i b u t e to the c r e a t i o n of the meaning of i l l n e s s , p r i m a r i l y , the p e r s o n ' s background and personal c h a r a c t e r i s t i c s , the t i m i n g of the i l l n e s s i n the l i f e c y c l e , the i l l n e s s r e l a t e d f a c t o r s , and the p h y s i c a l , c u l t u r a l , and human environment (Moos & T s u , 1977) . However, the f a m i l y i s viewed by many as the s i n g l e most impor tant i n f l u e n c e i n the f o r m u l a t i o n of t h i s d e f i n i t i o n of i l l n e s s ( B l a c h e r , 1970; Feldman, 1974; Shontz , 1975) . Because the f a m i l y i s the primary s o c i a l u n i t , i t i s i n t h i s environment t h a t the meaning of i l l n e s s i s c r e a t e d . For the c h r o n i c a l l y i l l who c o n f r o n t not a temporary adjustment but a permanent l i f e s t y l e change, i t i s where " the meaning of c h r o n i c i t y comes to be born" (Quint , 1969, p . 6 1 ) . The f a m i l y environment i s a l s o r e c o g n i z e d as among those primary re sources tha t can enhance a member's a d a p t a t i o n to i l l n e s s . Caplan (1974, p . 8) e x p l a i n s t h a t " the best known and most u b i q u i t o u s support system i n a l l s o c i e t i e s i s the m a r i t a l and f a m i l y g r o u p , " and goes on to d e s c r i b e i t s s u p p o r t i v e f u n c t i o n s as : s h a r i n g among members, p r o v i d i n g feedback and 16 gu idance , c o n t r i b u t i n g to emotional mas tery , a c t i n g as a source of a i d , a haven to r e s t and r e c u p e r a t e , a r e f e r e n c e group, and a source of i d e n t i t y . Al though i t i s r e c o g n i z e d t h a t the f a m i l y can b u f f e r d i s r u p t i v e s t r e s s o r s , the f a m i l y i s a l so known to be a source of these s t r e s s o r s . In o ther words , the f a m i l y has the p o t e n t i a l to enhance or i n h i b i t i t s members' a b i l i t i e s to cope wi th i l l n e s s (Murawski , Penman & S c h m i t t , 1978) . Given the s i g n i f i c a n t r o l e of the f a m i l y i n the i l l n e s s exper ience of i t s members, i t i s l o g i c a l t h a t the i n f l u e n c e of the f a m i l y would be r e f l e c t e d i n s t u d i e s of a d u l t s cop ing with COPD. S tud ie s of i n d i v i d u a l s wi th COPD are reviewed to exp lore t h i s a s sumpt ion . Research S t u d i e s of I n d i v i d u a l s with COPD A l i m i t e d number of s t u d i e s were found t h a t e x p l o r e d the exper ience of i n d i v i d u a l s cop ing wi th COPD. Four p e r t i n e n t s t u d i e s are r e v i e w e d , f o c u s i n g on the i n f l u e n c e of the f a m i l y on the i n d i v i d u a l ' s i l l n e s s e x p e r i e n c e . S u b s t a n t i a l i n s i g h t i n t o how i n d i v i d u a l s cope with COPD i s o f f e r e d i n an e x p l o r a t o r y d e s c r i p t i v e study by Chalmers (1980) . She i n v e s t i g a t e d the cop ing s t r a t e g i e s of 30 people wi th v a r y i n g degrees of a i r f l o w o b s t r u c t i o n . Both q u a l i t a t i v e and q u a n t i t a t i v e data were c o l l e c t e d i n r e l a t i o n t o : the p a r t i c i p a n t s ' p e r c e p t i o n s of t h e i r h e a l t h and how they coped , gathered by semi - s t r u c t u r e d i n t e r v i e w s ; t h e i r p e r c e p t i o n s of 17 locus of c o n t r o l , measured by the M u l t i d i m e n s i o n a l Hea l th Locus of C o n t r o l S c a l e s ; and a numerica l measure of h e a l t h , p r o v i d e d by the Grogono Hea l th Index. Q u a n t i t a t i v e f i n d i n g s supported the q u a l i t a t i v e f i n d i n g t h a t cop ing a b i l i t y was r e l a t e d to the i n d i v i d u a l s ' p e r c e p t i o n s of t h e i r d i s e a s e , i t s e f f e c t on t h e i r d a i l y l i v e s , and t h e i r h e a l t h s t a t u s . Chalmers i n d i c a t e d tha t her f i n d i n g s support the t h e s i s tha t the meaning a t t r i b u t e d to i l l n e s s i s a s i g n i f i c a n t determinant i n an i n d i v i d u a l ' s a b i l i t y to cope . Because the f a m i l y i s known to be a pr imary f a c t o r i n the f o r m u l a t i o n of the meaning of i l l n e s s , the w r i t e r suggests t h a t these f i n d i n g s a l so r e f l e c t the f a m i l y ' s i n f l u e n c e upon the i n d i v i d u a l ' s a b i l i t y to cope with COPD. C o n s i s t e n t with the w r i t e r ' s p remise , Chalmers f u r t h e r r e p o r t e d tha t the pr imary concern d e s c r i b e d by most p a r t i c i p a n t s was t h e i r a b i l i t y to ma in ta in a d e s i r e d r o l e i n the f a m i l y . T h i s i s c l e a r l y an a spect of the i n d i v i d u a l ' s exper i ence tha t i s i n t e g r a l l y r e l a t e d to the f a m i l y ' s response to h i s / h e r i l l n e s s . The s i g n i f i c a n c e of the f a m i l y f o r the i n d i v i d u a l ' s exper ience with COPD i s r e f l e c t e d i n another study by Hansen (1982) tha t e x p l o r e d a d u l t s ' p e r c e p t i o n s of the e f f e c t of c h r o n i c lung d i sea se on l i f e i n general and on s e x u a l i t y . Survey q u e s t i o n n a i r e s were completed by a convenience sample of 128 a d u l t s who were r e c e i v i n g o u t p a t i e n t care fo r diagnosed lung d i s e a s e . The q u e s t i o n n a i r e addressed the e f f e c t of lung d i sea se on the f o l l o w i n g a rea s : l i f e i n g e n e r a l ; employment and income; s e l f c a r e , bus ines s and home r e s p o n s i b i l i t i e s ; 18 m a r r i a g e ; sexual a spects of m a r r i a g e ; emotional aspects of m a r r i a g e ; care of c h i l d r e n / g r a n d c h i l d r e n ; emot ions ; and, dependency on o t h e r s . As w e l l , the q u e s t i o n n a i r e addressed the e f f e c t of symptoms and t reatments on l i f e i n general and on s e x u a l i t y . On a seven p o i n t L i k e r t s c a l e , the p a r t i c i p a n t s overwhelmingly chose the h i g h e s t numerica l i n d i c a t o r of the e f f e c t of lung d i sea se i n each of the 11 a rea s . Al though the p a r t i c i p a n t s p e r c e i v e d tha t the impact of lung d i sea se was marked i n a l l a r e a s , t h e i r p e r c e p t i o n s of how the d i sea se had a f f e c t e d t h e i r l i v e s v a r i e d between p a r t i c i p a n t s . For example, the e f f e c t of the d i sea se on t h e i r dependency on o ther s was p e r c e i v e d by 40% to be p o s i t i v e , 22% to be n e u t r a l , and 38% to be n e g a t i v e . The e f f e c t on marr iage was seen by 37% to be p o s i t i v e , 2% to be n e u t r a l , and 61% to be n e g a t i v e . To the w r i t e r i t appears c l e a r t h a t the way each f a m i l y responded to the i l l n e s s would have s u b s t a n t i a l l y i n f l u e n c e d the i n d i v i d u a l ' s p e r c e p t i o n of the e f f e c t of COPD on these a spect s of h i s / h e r l i f e . Because the Hansen study r e p o r t e d no r e l i a b i l i t y or v a l i d i t y f o r the q u e s t i o n n a i r e t h a t was used, and d i d not use a random sample, the g e n e r a l i z a b i 1 i t y of the r e s u l t s are q u e s t i o n a b l e . I t i s noteworthy , however, t h a t the p a r t i c i p a n t s p e r c e i v e d t h a t a l l a spects of l i f e were g r e a t l y a f f e c t e d by COPD, and the m a j o r i t y of the aspects surveyed r e l a t e d to f a m i l y l i f e . The v a r i a b i l i t y i n the way the d i sea se was p e r c e i v e d by the p a r t i c i p a n t s to a f f e c t a spects of t h e i r l i v e s c o u l d r e f l e c t , i n p a r t , the i n f l u e n c e of the f a m i l y i n the f o r m u l a t i o n of t h e i r p e r c e p t i o n s . A study by Barstow (1974) a l s o r e f l e c t s the f a m i l y i n f l u e n c e on the a d u l t wi th COPD. Barstow i n t e r v i e w e d 11 a d u l t s with emphysema to e x p l o r e t h e i r cop ing s t r a t e g i e s . I t was found tha t one of the most important f a c t o r s promoting the i n d i v i d u a l ' s a b i l i t y to cope was the presence of another s i g n i f i c a n t p e r s o n . To the w r i t e r , t h i s f i n d i n g i n d i c a t e s the importance of the f a m i l y u n i t to i n d i v i d u a l s wi th COPD. A f t e r a l l , the f a m i l y i s the pr imary s o c i a l u n i t , and as such p r o v i d e s the pr imary source fo r those r e l a t i o n s h i p s found by Barstow to enhance the i l l p e r s o n ' s a b i l i t y to cope . R e s u l t s of a study from a d i f f e r e n t p e r s p e c t i v e support the view t h a t the f a m i l y i s an important i n f l u e n c e on a member's exper i ence wi th COPD. In a q u a n t i t a t i v e s tudy , P a t t i s o n (1974) examined p h y s i o l o g i c a l , p s y c h o l o g i c a l , and s o c i o l o g i c a l f a c t o r s as p o s s i b l e p r e d i c t o r s of death i n 12 men wi th emphysema whose m o r t a l i t y r i s k s were h i g h . N e i t h e r p h y s i o l o g i c a l s t a tus measured by b lood gases and pulmonary f u n c t i o n s t u d i e s , nor p s y c h o l o g i c a l s t a tu s measured by the I n p a t i e n t M u l t i d i m e n s i o n a l P s y c h i a t r i c S c a l e , c o r r e l a t e d with death or c l i n i c a l improvement. The only v a r i a b l e r e l a t e d to c l i n i c a l improvement was the presence of an i n t a c t , p o s i t i v e network of s o c i a l r e l a t i o n s h i p s and the a b i l i t y to use s o c i a l r e s o u r c e s . In c o n t r a s t , d i s r u p t e d and poor f a m i l y r e l a t i o n s h i p s were c o r r e l a t e d to e a r l i e r dea th . Al though s p e c i f i c r e l a t i o n s h i p s are d i f f i c u l t to e s t a b l i s h i n a 20 s i t u a t i o n with many c o n t r i b u t i n g f a c t o r s and the sample s i z e of the study i s s m a l l , the powerful i n f l u e n c e of s o c i a l r e l a t i o n s h i p s , e s p e c i a l l y f a m i l y r e l a t i o n s h i p s , i n d i c a t e d by the f i n d i n g s i s s t r i k i n g . P a t t i s o n p o s t u l a t e d tha t the source of the i n f l u e n c i a l s t r e n g t h of s o c i a l r e l a t i o n s h i p s r e l a t e s to the l i f e fo rce of " h a v i n g someone or something to l i v e f o r " (p . 145) . A g a i n , the f a m i l y u n i t p r o v i d e s the pr imary source of these r e l a t i o n s h i p s . Thus , the f a m i l y i n f l u e n c e on the i l l n e s s exper ience of a member with COPD can be i n f e r r e d from P a t t i s o n ' s f i n d i n g s . The i m p l i c a t i o n of the i n t e g r a l r o l e p l ayed by the f a m i l y as a person copes wi th COPD i s p r o v i d e d by the f i n d i n g s of the four s t u d i e s r e v i e w e d . These s t u d i e s a l so i n d i c a t e , however, tha t the f a m i l y can ac t as e i t h e r a re source or a l i a b i l i t y to i t s member's a d a p t a t i o n , which i s c o n s i s t e n t with the p e r s p e c t i v e s of o ther t h e o r i s t s ( K a p l a n , S m i t h , G r o b s t e i n & F i schman, 1973) . Caplan (1974) i n d i c a t e s tha t to be an e f f e c t i v e source of support to an i l l member a s i g n i f i c a n t degree of i n t a c t n e s s , i n t e g r a t i o n , and s t a b i l i t y w i t h i n the f a m i l y i s n e c e s s a r y . R e l a t i n g t h i s to the f a m i l y with COPD, how the f a m i l y copes wi th i t s member's i l l n e s s i s important to the w e l l - b e i n g of the member wi th COPD, as wel l as to the w e l l - b e i n g of the f a m i l y u n i t . The f o l l o w i n g s e c t i o n reviews the l i t e r a t u r e to assess the t h e o r e t i c a l base a v a i l a b l e to unders tand how COPD a f f e c t s the f a m i l y . 21 In f luence of COPD on the Family A review of l i t e r a t u r e to i d e n t i f y r e sea rch c o n c e r n i n g f a m i l i e s cop ing with COPD r e v e a l e d a dearth of r e sea rch i n v e s t i g a t i o n s s p e c i f i c to t h i s important a r e a . Only one s t u d y , the e f f e c t on the l i f e s t y l e of spouses of men wi th COPD, was found tha t focused on the exper ience of f a m i l y members. C o n s e q u e n t l y , l i t e r a t u r e was reviewed t h a t d e a l t more g e n e r a l l y with f a m i l i e s with c h r o n i c a l l y i l l members, i n order to p rov ide a ba s i s from which to view the f a m i l y exper ience wi th COPD. Thus , t h e o r e t i c a l p e r s p e c t i v e s are d i s c u s s e d i n the f i r s t pa r t of t h i s s e c t i o n of the l i t e r a t u r e r e v i e w , and i n the second p a r t , the c u r r e n t e m p i r i c a l base i s reviewed f o r i t s adequacy in p r o v i d i n g a more s p e c i f i c under s t and ing of the f a m i l y exper ience with COPD. T h e o r e t i c a l P e r s p e c t i v e s of the Impact of C h r o n i c I l l n e s s on  the Fami ly " I n d i v i d u a l s have c h r o n i c d i s e a s e s ; f a m i l i e s cope wi th c h r o n i c i l l n e s s " ( M i t c h e l l , 1983, p. 2 ) . I t has long been r e c o g n i z e d and supported by r e s e a r c h f i n d i n g s t h a t i l l n e s s ac t s as a d i s r u p t i v e i n f l u e n c e w i t h i n the f a m i l y (Anthony, 1970; Cooper , 1984; K l e i n , Dean, and Bogdonoff , 1967; Koos , 1946; Maurin & Schenkel , 1 975 ) . The wel l known w r i t i n g s of Hansen and H i l l (1964) of f a m i l i e s under s t r e s s c i t e i l l n e s s as a s t r e s s f u l event t h a t causes p o s s i b l e c r i s e s w i t h i n the f a m i l y . A s t r e s s f u l event fo r the f a m i l y i s d e f i n e d as one t h a t 22 produces changes i n the f a m i l y s o c i a l system, i t s b o u n d a r i e s , s t r u c t u r e , goa l s and p r o c e s s e s , r o l e s and va lues ( B u r r , 1973). The view of i l l n e s s as s t r e s s f u l and p o t e n t i a l l y c r i s i s -produc ing i s now p r e v a l e n t throughout the l i t e r a t u r e ( B e n o l i e l & M c C o r k l e , 1978; MacVicar & A r c h b o l d , 1976; M i t c h e l l , 1983) . B e n o l i e l i n d i c a t e s tha t "some h e a l t h care problems can l e a d to s o c i a l c r i s e s of s e r i o u s dimensions t h a t i n t e r f e r e with a f a m i l y ' s c a p a c i t y to f u n c t i o n or with the human needs of some of the f a m i l y members" (1982, p . 109) . The changes ensuing from the s t r e s s of a c h r o n i c i l l n e s s , however, are seen to d i f f e r from those t h a t accompany an acute i l l n e s s ; for c h r o n i c i l l n e s s e s are permanent r a t h e r than temporary . They are u n c e r t a i n i n t h e i r p rognos i s and i n the occurrence of acute e x a c e r b a t i o n s t h a t u s u a l l y accompany the i l l n e s s . They i n t r u d e on l i f e s t y l e , commitments, and a c t i v i t i e s at home and s o c i a l l y . F u r t h e r m o r e , the accompanying symptoms demand t h a t e f f o r t s c o n s t a n t l y be aimed at r e l i e f ( S t raus s et a l . 1984) . O b v i o u s l y , these c h a r a c t e r i s t i c s of c h r o n i c i l l n e s s pose c h a l l e n g e s t h a t do not accompany a temporary i l l n e s s . Based upon s t u d i e s of people who have c h r o n i c i l l n e s s e s , i n t h e i r book, S t raus s et a l . (1984) i d e n t i f y m u l t i p l e problems these i n d i v i d u a l s commonly f a c e : p r e v e n t i n g medical c r i s e s and managing those tha t o c c u r , c o n t r o l l i n g symptoms, c a r r y i n g out t reatment reg imens , c o n f r o n t i n g p o t e n t i a l s o c i a l i s o l a t i o n , a d j u s t i n g to the changing course of the d i s e a s e , a t tempt ing to norma l i ze i n t e r a c t i o n s wi th o t h e r s , managing f i n a n c i a l 23 i m p l i c a t i o n s of the i l l n e s s , and c o n f r o n t i n g the accompanying p s y c h o l o g i c a l , m a r i t a l , and f a m i l y problems . These authors emphasize t h a t the s t r a t e g i e s to handle these problems i n v o l v e the f a m i l y ; a s s i s t a n c e of f a m i l y members, r e o r g a n i z a t i o n of f a m i l y l i f e , and new a c t i v i t i e s w i t h i n the f a m i l y are n e c e s s a r y . Al though S t raus s and h i s c o l l e a g u e s add grea t i n s i g h t i n t o the problems t h a t face the c h r o n i c a l l y i l l g e n e r a l l y , f u r t h e r knowledge of the way p a r t i c u l a r c h r o n i c i l l n e s s e s c r e a t e these problems would p rov ide g r e a t e r d i r e c t i o n to enable nurses to p lan care to meet the needs common to f a m i l i e s cop ing wi th a s p e c i f i c c h r o n i c i l l n e s s , such as COPD. Fur thermore , t h e i r work p r o v i d e s the p e r s p e c t i v e of the i n d i v i d u a l cop ing with c h r o n i c i l l n e s s , not the p e r s p e c t i v e of the f a m i l y u n i t . In c o n t r a s t , McCubbin et al . (1 980) attempt to p l ace c h r o n i c i l l n e s s w i t h i n the c o n t e x t of the e n t i r e t y of f a m i l y l i f e . From t h i s p e r s p e c t i v e , the s t r e s s o r of i l l n e s s i s on ly one s t r e s s o r w i t h i n the f a m i l y ' s l i f e . These authors propose tha t the f a m i l y c o n c u r r e n t l y manages v a r i o u s a spects of f a m i l y l i f e : m a i n t a i n i n g i n t e r n a l communication and f a m i l y o r g a n i z a t i o n , promoting member independence and s e l f - e s t e e m , m a i n t a i n i n g f a m i l y bonds, m a i n t a i n i n g and d e v e l o p i n g s o c i a l s u p p o r t s , and c o n t i n u i n g e f f o r t s to c o n t r o l the impact of the s t r e s s o r and the amount of change i n the f a m i l y u n i t . Fami ly cop ing behav iour i s seen as "a process of a c h i e v i n g a ba lance i n the f a m i l y system which f a c i l i t a t e s o r g a n i z a t i o n and u n i t y 24 and promotes i n d i v i d u a l growth and development" (p . 865) . The i l l n e s s i s on ly one f o r c e a c t i n g upon t h i s p r o c e s s . M i t c h e l l (1983) contends t h a t a l though the f a m i l y manages these broader tasks of f a m i l y l i f e , the focus of the f a m i l y changes dur ing t imes of c r i s i s , such as i n c r i s e s accompanying c h r o n i c i l l n e s s . Energy w i t h i n the f a m i l y at these t imes c e n t e r s on c r i s i s - o r i e n t e d tasks of s u p p o r t i n g one another and m a r s h a l l i n g re sources to r e s t o r e the f a m i l y e q u i l i b r i u m . She ma in ta ins tha t i f the c r i s i s i s not r e s o l v e d and symptoms of t e n s i o n c o n t i n u e to e x i s t , f a m i l y growth may be permanently r e t a r d e d . C o n s i s t e n t l y wi th M i t c h e l l ' s a s sumpt ion , Feldman (1974) i n d i c a t e s tha t the i n c i d e n c e of breakdown i n f a m i l i e s with a c h r o n i c a l l y i l l member has been found to be h igher than average . He goes on to d e s c r i b e t h a t t h i s has been a t t r i b u t e d to the c o n t i n u i n g fo rce of poor h e a l t h w i t h i n the f a m i l y and the d i s r u p t e d f a m i l y f u n c t i o n i n g accumula t ing over t i m e . The t h e o r e t i c a l base presented here c l e a r l y i n d i c a t e s t h a t the f a m i l y with a c h r o n i c a l l y i l l member c o n f r o n t s a s t r e s s f u l s i t u a t i o n and i s s u s c e p t i b l e to d i s r u p t e d f u n c t i o n i n g of the f a m i l y . Given t h i s knowledge, n u r s i n g a t t e n t i o n to the needs of the f a m i l y as wel l as the i l l member i s i n t e g r a l to the promotion of the h e a l t h of a l l members and the f a m i l y u n i t i t s e l f . As was i n d i c a t e d e a r l i e r , i n order to p r o v i d e e f f e c t i v e f a m i l y - f o c u s e d care to f a m i l i e s i n which an a d u l t member has COPD, nurses r e q u i r e an under s t and ing of what these f a m i l i e s e x p e r i e n c e . Thus , the c u r r e n t e m p i r i c a l base i s reviewed by the author to determine the adequacy of t h i s 25 knowledge base to p r o v i d e an under s t and ing of the f a m i l y exper ience with COPD. Review of C u r r e n t Research Base to Understand the Fami ly  Exper i ence with COPD S tud ie s of the f a m i l y wi th COPD are c o n s p i c u o u s l y absent from the l i t e r a t u r e . The re sea rch s t u d i e s p u b l i s h e d about f a m i l i e s cop ing with i l l n e s s predominant ly c o n c e n t r a t e upon f a m i l i e s with an i l l c h i l d , a m e n t a l l y i l l member, a member with a s t a b l e d i s a b i l i t y , an acute i l l n e s s , or c a n c e r . In the a u t h o r ' s o p i n i o n , the e m p i r i c a l base developed by these s t u d i e s i s inadequate to gain an under s t and ing of the f a m i l y wi th COPD. The f a m i l y with an i l l c h i l d appears to have been the major focus of r e sea rch i n t h i s area ( B u r t o n , 1975; Hayes & Knox, 1984) . But an a d u l t ' s i l l n e s s r e p r e s e n t s a d i f f e r e n t exper ience fo r the f a m i l y than when a c h i l d , who i s i n a dependency r o l e , i s i l l ( D a v i s , 1980) . For t h i s r e a s o n , s t u d i e s of f a m i l i e s d e a l i n g wi th a c h i l d ' s i l l n e s s are seen as an i n a p p r o p r i a t e base from which to develop an under s t and ing of the f a m i l y with a c h r o n i c a l l y i l l a d u l t . S t u d i e s of f a m i l i e s wi th an a c u t e l y i l l member or a member with a s t a b l e d i s a b i l i t y are a l so seen as inadequate fo r under s t and ing the f a m i l y wi th COPD. S i g n i f i c a n t d i f f e r e n c e s e x i s t between cop ing with a temporary i l l n e s s or with a s t a b l e d i s a b i l i t y , and f a c i n g the permanent but p r o g r e s s i v e changes of a c h r o n i c i l l n e s s (Beland & Pas sos , 1975) . In r e l a t i o n to an acute i l l n e s s , Dimond and Jones (1983a) 26 d e s c r i b e the l i m i t a t i o n s of us ing the c l a s s i c s i c k r o l e framework by Parsons to i n t e r p r e t the s o c i a l impact of c h r o n i c i l l n e s s . A c c o r d i n g to Parsons (1951) , i n d i v i d u a l s who are s i c k are not he ld r e s p o n s i b l e fo r caus ing t h e i r c o n d i t i o n s , are exempt from usual s o c i a l r o l e r e s p o n s i b i l i t i e s , and are only r e s p o n s i b l e to f i n d competent medical help and cooperate to r e s t o r e t h e i r h e a l t h . Whereas the s i c k r o l e framework may apply to acute i l l n e s s : In c h r o n i c i l l n e s s , usual r o l e performance may be only p a r t i a l l y resumed a f t e r the acute stage of the i l l n e s s ; m o t i v a t i o n to get wel l i s an i n a p p r o p r i a t e e x p e c t a t i o n i n the presence of i r r e v e r s i b l e p a t h o l o g y ; c o n s i d e r a t i o n s of q u a l i t y of l i f e may outweight the o b l i g a t i o n to seek t rea tment ; and compl iance with medical adv ice can be only a p a r t i a l e x p e c t a t i o n when the c l i e n t and the f a m i l y are the major managers of the i l l n e s s (Dimond & Jones , 1983a, p. 42 ) . S i m i l i a r i l y , the e x p e c t a t i o n s upon an i n d i v i d u a l with a s t a b l e d i s a b i l i t y can a l so d i f f e r from the e x p e c t a t i o n s o ther s h o l d for those with a p r o g r e s s i v e c h r o n i c i l l n e s s ( M e l v i n & N a g i , 1970) . In l i g h t of the d i f f e r e n c e between the s o c i a l c o n t e x t of a c u t e , c h r o n i c , and s t a b l e d i s a b i l i t i e s , the f i n d i n g s from s t u d i e s of acute i l l n e s s or s t a b l e d i s a b i l i t y w i t h i n the f a m i l y are seen by the w r i t e r as inadequate or p o s s i b l y i n a p p r o p r i a t e as a base f o r nur se s ' under s t and ing of f a m i l i e s wi th COPD. Even s t u d i e s of f a m i l i e s with a d u l t members with c h r o n i c i l l n e s s e s o ther than COPD are seen by the w r i t e r as i n s u f f i c i e n t to understand the COPD e x p e r i e n c e . B e n o l i e l (1983) proposes t h a t d i sea se c h a r a c t e r i s t i c s such as the 27 awareness of p r o g n o s i s , e f f e c t i v e n e s s of a v a i l a b l e medical t r e a t m e n t , s o c i a l v i s i b i l i t y of the d i s e a s e , and the a n t i c i p a t e d d i sea se c o u r s e , i n f l u e n c e i n t e r a c t i o n a l p a t t e r n s i n f a m i l i e s . D i f f e r e n t d i sea se s then c r e a t e d i f f e r e n t f o r c e s upon the f a m i l y e x p e r i e n c e . T h i s i s not to say t h a t f a m i l i e s with members who have d i f f e r e n t types of c h r o n i c i l l n e s s e s or with i l l members of d i f f e r e n t ages do not share many s i m i l i a r c h a l l e n g e s and exper i ences tha t are common to the f a m i l y wi th COPD, but d i s e a s e - s p e c i f i c demands a l so e x i s t . T r a n s f e r r i n g knowledge gained from i n v e s t i g a t i o n s of the f a m i l y exper i ence with another c h r o n i c i l l n e s s to the f a m i l y with COPD c o u l d l ead to d i s t o r t e d i n t e r p r e t a t i o n s of f a m i l y b e h a v i o u r . Perhaps the s i g n i f i c a n t a spect of l i v i n g wi th COPD may be o v e r l o o k e d or underra ted wi thout under s t and ing the s p e c i f i c demands r e l a t e d to the c h a r a c t e r i s t i c s of COPD. However, few s t u d i e s were found of the f a m i l y with COPD, from e i t h e r the p e r s p e c t i v e of i n d i v i d u a l f a m i l y members or the f a m i l y u n i t , tha t would enable a reader to gain an indepth under s t and ing of what the f a m i l y with COPD e x p e r i e n c e s . A recent study by Sexton (1984) i s a beg inn ing to address t h i s need. In an e x p l o r a t o r y s t u d y , Sexton i n v e s t i g a t e d how the l i f e s t y l e s of women were a f f e c t e d when t h e i r husbands had COPD. Q u e s t i o n n a i r e s were completed by 46 wives of men wi th COPD and 30 wives of men who had no c h r o n i c i l l n e s s e s . The q u e s t i o n n a i r e s comprised four s e c t i o n s : b i o g r a p h i c a l d a t a , an I l l n e s s Impact Form, a S u b j e c t i v e S t r e s s S c a l e , and a L i f e 28 S a t i s f a c t i o n Index. The r e s u l t s i n d i c a t e d t h a t of the men with COPD, h a l f were dependent upon t h e i r spouses some of the time fo r a c t i v i t i e s of d a i l y l i v i n g . The wives of men with COPD r e p o r t e d a d d i t i o n a l r e s p o n s i b i l i t i e s and the assumption of new r o l e s as these became vacated by t h e i r husbands. The women i d e n t i f i e d p s y c h o l o g i c a l problems i n r e l a t i o n t o : t h e i r husbands' a t t i t u d e s , i r r i t a b i l i t y and c o m p l a i n t s ; t h e i r own l o s s of freedom; and the worry about t h e i r husbands' h e a l t h and whether they would r ecover from acute e x a c e r b a t i o n s . Most wives kept d i s t u r b i n g i n f o r m a t i o n from t h e i r husbands i n order to a v o i d d i s t r e s s - c a u s e d b r e a t h l e s s n e s s . Most of these women had g iven up r e c r e a t i o n a l and s o c i a l a c t i v i t i e s because of the problems in p l a n n i n g , the day- to-day f l u c t u a t i o n s i n t h e i r husbands' h e a l t h , and t h e i r i n t o l e r a n c e to second hand smoke. Awakening d u r i n g the n i g h t due to the husband's shor tnes s of b r e a t h , c o u g h i n g , or r e s t l e s s n e s s was r e p o r t e d by n e a r l y a l l w i v e s . Some had stopped s l e e p i n g i n the same bed or same room with t h e i r spouses . The frequency of sexual r e l a t i o n s was lower i n the couple s with COPD than those w i t h o u t . With the l o s s of the husband's income, many wives worked longer and n e a r l y a l l assumed r e s p o n s i b i l i t y fo r f i n a n c i a l management i n the f a m i l y . F i n a l l y , these women r e p o r t e d s i g n i f i c a n t l y h igher s t r e s s scores and lower l i f e s a t i s f a c t i o n than wives of husbands wi thout c h r o n i c i l l n e s s e s . V i s i b l y , the l i v e s of the spouses of men with COPD are d r a s t i c a l l y a l t e r e d , and c e r t a i n l y t h e i r w e l l - b e i n g t h r e a t e n e d . Both Sex ton ' s study of wives of men with COPD and s t u d i e s of i n d i v i d u a l s with COPD, such as t h a t by Chalmers , c o n t r i b u t e c o n s i d e r a b l e i n s i g h t i n t o the demands of COPD i t s e l f and the complex i n t e r a c t i o n between the d i s e a s e , the i l l p e r s o n , and the f a m i l y . T h i s seems inadequa te , however, wi thout the p e r s p e c t i v e of the f a m i l y u n i t , t h a t i s , how the f a m i l y members as a group d e s c r i b e and e x p l a i n t h e i r e x p e r i e n c e . A f t e r a l l , the members of the f a m i l y toge ther c r e a t e a p e r s p e c t i v e d i s t i n c t from tha t of the f a m i l y members i n d i v i d u a l l y (Blumer, 1969; R e i s s , 1981; T h o r n e , 1983) . The exper ience of the i n d i v i d u a l f a m i l y members, t h e r e f o r e , may not r e f l e c t the exper ience of the e n t i r e f a m i l y u n i t . To unders tand the f a m i l y e x p e r i e n c e , the f a m i l y must be the focus of i n v e s t i g a t i o n . I t i s not s u r p r i s i n g t h a t the p e r s p e c t i v e of the f a m i l y with COPD has not been p r e v i o u s l y s t u d i e d , as few s t u d i e s of f a m i l y phenomena have i n v e s t i g a t e d the exper ience from t h i s f o c u s . From the l i t e r a t u r e , i t appears t h a t there are two main reasons f o r t h i s . These are r e f l e c t e d i n ques t ions t h a t are posed throughout the f a m i l y s t r e s s l i t e r a t u r e , which a r e : i s there a c o l l e c t i v e f a m i l y p e r s p e c t i v e , and, i f so , what i s i t ? And, what i s the best method to e l i c i t i t ? (McCubbin, et al . 1980, p . 862) . The complex i ty of the task posed by s t u d y i n g the f ami ly members toge ther can be f o r m i d a b l e . Family l i f e i s complex, as i s the method of c a p t u r i n g the a b s t r a c t phenomena of f a m i l y d e s c r i p t i o n s i n c o n c r e t e te rms . The d e t e r r e n t t h i s p re sent s i s a p t l y r e f l e c t e d i n the w r i t i n g of G o u r e v i t c h (1973, p . 22 ) : 30 "The f a m i l y ' s r e a c t i o n can be only examined w i t h i n the contex t of the ongoing t r a n s a c t i o n a l o b s e r v a t i o n s t h a t take i n t o account the l a r g e numbers of v a r i a b l e s i n v o l v e d , and t h i s probab ly accounts fo r the dear th of s t u d i e s of t h i s t y p e . " Regardles s of the d i f f i c u l t i e s i n h e r e n t i n f a m i l y r e s e a r c h , i n v e s t i g a t i n g i l l n e s s from the p e r s p e c t i v e of the f a m i l y i s nece s s a ry , f o r nurses and o ther h e a l t h care p r o f e s s i o n a l s d e l i v e r care to f a m i l i e s as wel l as t h e i r i n d i v i d u a l members. F u r t h e r m o r e , i n d i v i d u a l concepts a lone are inadequate to p rov ide these groups with an under s t and ing of i l l n e s s w i t h i n the c o m p l e x i t i e s of the t o t a l f a m i l y system ( B i s h o p , E p s t e i n & B a l d w i n , 1981) . In c o n c l u s i o n , t h i s l i t e r a t u r e review i n d i c a t e s the f o l l o w i n g : the f a m i l y members' i n t e r a c t i o n s a f f e c t a member's reponse to h i s / h e r i l l n e s s ; c h r o n i c i l l n e s s r e p r e s e n t s a s t r e s s f u l s i t u a t i o n to the f a m i l y as wel l as the i l l member, a l t e r i n g the f a m i l y ' s way of l i f e ; and, the exper ience of the i l l n e s s may t h r e a t e n f a m i l y f u n c t i o n i n g , a f f e c t i n g the h e a l t h of each member and the a b i l i t y of the f a m i l y to support the i l l member. T h i s w r i t e r argues tha t the c u r r e n t re search base does not p r o v i d e adequate i n s i g h t to unders tand the exper ience of the f a m i l y with COPD, which i s necessary i f nurses are to be r e s p o n s i v e to the needs of these f a m i l i e s . As w e l l , the author submits t h a t the f a m i l y exper i ence can best be a s c e r t a i n e d from the f a m i l y group. T h i s i n v e s t i g a t i o n of the exper i ence from the p e r s p e c t i v e of the f a m i l y group i s seen to c o n t r i b u t e to a 31 knowledge base p r e s e n t l y inadequate i n the l i t e r a t u r e , one tha t can enhance the n u r s i n g care p r o v i d e d to f a m i l i e s with an a d u l t member with COPD. Summary T h i s chapter reviewed l i t e r a t u r e i n r e l a t i o n to the i n f l u e n c e of the f a m i l y on the i l l n e s s exper i ence of a member who has COPD and the impact of COPD on the f a m i l y i n order to p lace t h i s i n v e s t i g a t i o n w i t h i n the c o n t e x t of the c u r r e n t knowledge base . Because there were l i m i t e d re sea rch s t u d i e s found c o n c e r n i n g f a m i l i e s wi th COPD, l i t e r a t u r e was a l s o reviewed from the more general p e r s p e c t i v e of f a m i l i e s wi th c h r o n i c i l l n e s s . The author then c r i t i q u e d the adequacy of the present r e sea rch base fo r nurses to gain an indepth under s t and ing of the f a m i l y exper ience when an a d u l t member has COPD, and found i t l a c k i n g . The next chapter d e s c r i b e s the process of t h i s i n v e s t i g a t i o n undertaken to address the i d e n t i f i e d need. CHAPTER THREE Methodology The methodo log i ca l p e r s p e c t i v e of phenomenology, as d e s c r i b e d i n Chapter One, p r o v i d e d the s t r u c t u r e f o r t h i s r e search i n v e s t i g a t i o n . T h i s chapter w i l l d e l i n e a t e the process of a p p l y i n g the method i n t h i s study of the f a m i l y exper ience with COPD by a d d r e s s i n g the f o l l o w i n g a rea s : the s e l e c t i o n of p a r t i c i p a n t s , data c o l l e c t i o n , data a n a l y s i s , and e t h i c a l c o n s i d e r a t i o n s . S e l e c t i o n of P a r t i c i p a n t s The purpose of the study was to d e s c r i b e and e x p l a i n the exper ience of the f a m i l y wi th COPD. From a phenomenological p e r s p e c t i v e , p a r t i c i p a n t s ac t as c o - r e s e a r c h e r s , and t h e r e f o r e , are s e l e c t e d on the c r i t e r i a t h a t they have exper ience with the t o p i c s t u d i e d and can communicate i t ( C o l a i z z i , 1978) . C o n s i s t e n t l y with t h i s approach , the i n t e n t of the s e l e c t i o n process i n t h i s study was to access f a m i l i e s i n which a member has COPD. A d e s c r i p t i o n of the s e l e c t i o n c r i t e r i a , the s e l e c t i o n p r o c e d u r e , and the c h a r a c t e r i s t i c s of the f a m i l i e s who ac ted as p a r t i c i p a n t s i n the re search f o l l o w . C r i t e r i a f o r S e l e c t i o n The s p e c i f i c c r i t e r i a e s t a b l i s h e d to s e l e c t the p a r t i c i p a n t f a m i l i e s were: 1. The f a m i l y has an a d u l t member wi th COPD p r e s e n t l y 33 l i v i n g at home. 2. The a d u l t i s d iagnosed with COPD, and as determined by h i s / h e r p h y s i c i a n , i s not i n a t e r m i n a l stage of i l l n e s s . 3. A v o l u n t a r y i n t e r e s t i n be ing i n t e r v i e w e d and s h a r i n g t h e i r f a m i l y ' s exper ience i s expressed by the members. 4. The f a m i l y members have the a b i l i t y to communicate f l u e n t l y i n the E n g l i s h language . 5. The f a m i l y r e s i d e s i n the Grea te r Vancouver a r e a . The r a t i o n a l e fo r e s t a b l i s h i n g each of these c r i t e r i a f o l 1 ows. I t was s p e c i f i e d t h a t the i l l member be l i v i n g at home, as the focus of study was the impact of the i l l n e s s upon the f a m i l y ' s d a i l y l i f e , not s o l e l y the exper ience of having a member i n the f a m i l y with COPD. Those people who were determined to be at a t e r m i n a l p o i n t i n t h e i r i l l n e s s were exc luded i n an attempt to avo id r e q u e s t i n g f a m i l i e s to p a r t i c i p a t e i n another emotional exper i ence at a time the f a m i l y i s p r e p a r i n g fo r a member's d e a t h , as wel l as to a v o i d r e q u e s t i n g i n d i v i d u a l s with extremely l i m i t e d energy to p a r t i c i p a t e in an energy consuming a c t i v i t y . Fami ly involvement was sought on a s t r i c t l y v o l u n t a r y ba s i s to r e s p e c t the f a m i l y ' s r i g h t to chose p a r t i c i p a t i o n , as wel l as to e n l i s t f a m i l i e s i n t e r e s t e d i n c o n t r i b u t i n g to the s tudy . T h i s i s c o n s i s t e n t with the methodology chosen ( C o l a i z z i , 1978) . The language requirement was des igned to ensure the f a m i l i e s were not r e s t r i c t e d i n t h e i r a b i l i t y to c l e a r l y r e l a t e t h e i r exper i ence s to the r e s e a r c h e r who i s f l u e n t i n E n g l i s h o n l y . 34 The geographic r e s t r i c t i o n ensured t h a t the r e s e a r c h e r , l i m i t e d by time and c o s t s , c o u l d t r a v e l to i n t e r v i e w the f a m i l i e s i n the comfor tab le sur roundings of t h e i r own homes. T h i s c r i t e r i a was a l so s e l e c t e d because i t was a n t i c i p a t e d tha t t r a v e l l i n g to i n t e r v i e w s i t e s may be d i f f i c u l t f o r the i l l a d u l t s . S e l e c t i o n Procedure A s p e c i f i c procedure was f o l l o w e d to a c q u i r e f a m i l i e s who met the e s t a b l i s h e d c r i t e r i a . Upon r e q u e s t , three r e s p i r a t o r y p h y s i c i a n s consented to i d e n t i f y people i n t h e i r p r a c t i c e who met the s e l e c t i o n c r i t e r i a (see Appendix A ) . The names and addresses of the c l i e n t s were p r o v i d e d to the r e s e a r c h e r who then sent i n f o r m a t i o n l e t t e r s to inform them of the study and reques t t h e i r p a r t i c i p a t i o n (see Appendix B ) . A l l o w i n g time f o r r e c e i p t of the i n f o r m a t i o n l e t t e r , the i n d i v i d u a l with COPD was c o n t a c t e d by te lephone to d i s c u s s the r e sea rch and reques t the f a m i l y ' s d e c i s i o n about p a r t i c i p a t i o n . The i n t e n t to i n t e r v i e w a l l the f a m i l y members toge ther and to tape the i n t e r v i e w s , as s t a t e d i n the l e t t e r , was r e i t e r a t e d i n the te lephone c o n v e r s a t i o n to ensure the data g a t h e r i n g process was u n d e r s t o o d . I f a verba l consent was g iven by the c l i e n t on b e h a l f of h i s / h e r f a m i l y , a mutua l ly c o n v e n i e n t time f o r a f a m i l y i n t e r v i e w was a r r a n g e d . At the o u t s e t of the f i r s t i n t e r v i e w , the e n t i r e f a m i l y ' s consent was f o r m a l i z e d i n the s i g n i n g of the Fami ly Consent Form (see Appendix C ) . The s e l e c t i o n of some p a r t i c i p a n t f a m i l i e s was d i r e c t e d by 35 the r e s u l t s of e a r l y data c o l l e c t i o n and a n a l y s i s . The i l l a d u l t s in four of the s i x i n i t i a l f a m i l i e s i n t e r v i e w e d were i n v o l v e d i n a r e s p i r a t o r y r e h a b i l i t a t i o n program. Because i t was thought t h a t p a r t i c i p a t i o n i n t h i s program may a f f e c t a f a m i l y ' s e x p e r i e n c e , i t was dec ided to i n c l u d e f a m i l i e s where the i l l a d u l t s were not i n v o l v e d i n such a program. C o n s e q u e n t l y , a r e s p i r a t o r y p h y s i c i a n was c o n t a c t e d who d i d not r e f e r h i s c l i e n t s to a r e h a b i l i t a t i o n program. Using the same procedure and f o l l o w i n g the s e l e c t i o n c r i t e r i a , a d d i t i o n a l f a m i l i e s whose i l l members were not i n v o l v e d wi th a r e h a b i l i t a t i o n program were s o l i c i t e d f o r p a r t i c i p a t i o n i n the s tudy . T h i s d e c i s i o n about p a r t i c i p a n t s e l e c t i o n made d u r i n g the course of the i n v e s t i g a t i o n was c o n s i s t e n t with the q u a l i t a t i v e method, wherein a d d i t i o n a l p a r t i p a n t s are sought to o b t a i n data t h a t w i l l more f u l l y address ques t ions a r i s i n g i n the process of i n v e s t i g a t i o n ( L o f l a n d , 1984) . D e s c r i p t i o n of P a r t i c i p a n t F a m i l i e s E i g h t f a m i l y groups u l t i m a t e l y acted as c o - r e s e a r c h e r s i n the i n v e s t i g a t i o n of the f a m i l y exper i ence wi th COPD. A d e s c r i p t i o n of the f a m i l i e s i s p r o v i d e d to share t h e i r demographic c h a r a c t e r i s t i c s with the r e a d e r . Compos i t ion of the f a m i l y groups . In f i v e of the e i g h t f a m i l i e s , the m a r i t a l couple r e p r e s e n t e d the f a m i l y group. Each of these couple s has a d u l t c h i l d r e n l i v i n g away from home, but i n the Vancouver a r e a . In the o ther three f a m i l i e s , the groups compr i s ed : a m a r i t a l couple and t h e i r daughter ; a 36 m a r i t a l couple and t h e i r three c h i l d r e n ; and a m a r i t a l c o u p l e , maternal grandmother and b r o t h e r , son , daughter and her young c h i l d . In a l l f a m i l i e s , on ly the m a r i t a l couple i s p r e s e n t l y l i v i n g at the f a m i l y home. C h a r a c t e r i s t i c s of the i l l a d u l t s . In a l l f a m i l i e s the a d u l t with COPD i s a member of the m a r i t a l c o u p l e . Four of the i l l a d u l t s are women and four are men. The ages of the i l l members v a r y : one i s 49, f i v e are i n t h e i r s i x t i e s , and two are in t h e i r e a r l y s e v e n t i e s . A l l the i l l people p e r c e i v e t h e i r a i r f l o w o b s t r u c t i o n to l i m i t t h e i r a c t i v i t i e s . Four of the i l l a d u l t s p a r t i c i p a t e i n a r e s p i r a t o r y r e h a b i l i t a t i o n program. None are able to work, or e l s e they are r e t i r e d . Three of these i n d i v i d u a l s have a d d i t i o n a l c h r o n i c i l l n e s s e s , namely a r t h r i t i s , sys temic l u p u s , and coronary a r t e r y d i s e a s e . C h a r a c t e r i s t i c s of the f a m i l y members. The age range of the spouses corresponds c l o s e l y to t h e i r p a r t n e r s , except i n the case of one wife who i s approx imate ly 10 yea r s o l d e r than her i l l husband. The c h i l d r e n who p a r t i c i p a t e d are 35 year s o l d or younger , and l i v e away from home. In a l l f a m i l i e s the spouses and o ther f a m i l y members have no d i s a b l i n g i l l n e s s e s . Only one of the spouses , the husband of the youngest i l l woman, i s employed. C u l t u r a l c h a r a c t e r i s t i c s . In s i x f a m i l i e s , a l l the members are Canadian b o r n . In the o ther two f a m i l i e s , both members of the m a r i t a l couple were born i n E n g l a n d , coming to Canada i n t h e i r e a r l y a d u l t y e a r s . Data C o l l e c t i o n 37 "From a phenomenological p e r s p e c t i v e , d e s c r i p t i o n or language i s access to the wor ld of the d e s c r i b e r " ( G i o r g i , 1975, p . 74 ) . Indepth i n t e r v i e w i n g was, t h e r e f o r e , the method of data c o l l e c t i o n chosen . The a d u l t wi th COPD and the f a m i l y members toge ther were i n t e r v i e w e d i n t h e i r homes, the environment s e l e c t e d to promote the members' e x p r e s s i o n of t h e i r f e e l i n g s and ease i n d e s c r i b i n g t h e i r exper i ence s (Ornery, 1983) . A r r a n g i n g the i n t e r v i e w s , the r e s e a r c h e r exper i enced some of the l i m i t a t i o n s demanded by COPD. For example, an appointment was c a n c e l l e d because a daughter had a c o l d and was consequent ly unable to go to her parents home. The i n t e r v i e w s were u s u a l l y p lanned on a t e n t a t i v e b a s i s , because of the d a i l y u n c e r t a i n t y of the i l l member's symptoms. Phone c a l l s on the day of the i n t e r v i e w conf i rmed the appo intments . The i n t e r v i e w s u s u a l l y took p l ace i n the a f t e r n o o n , as f o r many with COPD t h i s was the time of day when t h e i r b r e a t h i n g was e a s i e s t and t h e i r energy the g r e a t e s t . O r i g i n a l l y , two i n t e r v i e w s were planned with each f a m i l y . An i n t e r v i e w guide of open-ended ques t ions (see Appendix D) served i n the i n i t i a l i n t e r v i e w to help e l i c i t the f a m i l i e s ' d e s c r i p t i o n s of t h e i r e x p e r i e n c e s . The r e s e a r c h e r then asked ques t ions tha t arose from the a n a l y s i s of the f a m i l y ' s d e s c r i p t i o n and from i n t e r v i e w s with o ther f a m i l i e s ( L o f l a n d , 1984) . S ix of the f a m i l i e s were i n t e r v i e w e d t w i c e . I t was the 38 r e s e a r c h e r ' s exper ience tha t as she became more f a m i l i a r with the exper ience d e s c r i b e d by the f a m i l i e s and more s k i l l e d at f a c i l i t a t i n g the members' c o n s t r u c t i o n of t h e i r a c c o u n t s , indepth data c o u l d be ach ieved wi th some f a m i l i e s i n one i n t e r v i e w . C o n s e q u e n t l y , on ly one i n t e r v i e w was h e l d wi th two of the f a m i l i e s . A l l i n t e r v i e w s were aud io- tape r e c o r d e d . In a d d i t i o n , w r i t t e n f i e l d notes were kept of the i n t e r v i e w s and te lephone c o n v e r s a t i o n s . Often a f t e r the tape r e c o r d e r had been turned o f f , f u r t h e r data was r e v e a l e d i n the pursuant c o n v e r s a t i o n . These were subsequent ly recorded as f i e l d n o t e s . Dur ing one i n t e r v i e w the r e c o r d i n g tape b r o k e , which n e c e s s i t a t e d t h a t the i n t e r v i e w be recorded from the r e s e a r c h e r ' s memory, immediate ly a f t e r l e a v i n g the f a m i l y ' s home. The i n t e r v i e w s v a r i e d i n l eng th from 45 minutes to two h o u r s . As the essence of data c o l l e c t i o n i s the f a m i l y ' s d e s c r i p t i o n , the r e s e a c h e r ' s a b i l i t y to help the members p rov ide a c l e a r , r i c h d e s c r i p t i o n of t h e i r exper ience was an i n t e g r a l pa r t of the i n t e r v i e w p r o c e s s . Tak ing time i n i t i a l l y with the f a m i l i e s to promote a sense of mutual t r u s t and r e s p e c t , fundamental to any e f f e c t i v e r e l a t i o n s h i p (Egan, 1982) , was important to enhance the f a m i l y ' s ease i n t e l l i n g the r e s e a r c h e r i t s " s t o r y " (Olesen and W h i t t a k e r , 1967) . T h e r e f o r e , p r i o r to the i n t e r v i e w , the r e s e a r c h e r shared some personal i n f o r m a t i o n about h e r s e l f , such as the area of Canada she was f rom, her n u r s i n g background, and her i n t e r e s t i n the exper ience of f a m i l i e s l i k e t h e i r own. In a d d i t i o n , the 39 r e s e a r c h e r e x p l a i n e d her i n t e n t of d i s s e m i n a t i n g the r e sea rch r e s u l t s i n order to i n f l u e n c e the care a v a i l a b l e to f a m i l i e s who had an a d u l t member with COPD, and b r i e f l y o u t l i n e d the process of the re search i n which the f a m i l i e s were i n v o l v e d . The i n v e s t i g a t o r found i t b e n e f i c i a l to c l a r i f y at the b e g i n n i n g of the f i r s t i n t e r v i e w the r e s t r i c t i o n s on her p a r t i c i p a t i o n i n the d i s c u s s i o n , t h a t i s , she was e n a c t i n g the r o l e of a r e s e a r c h e r r a t h e r than a c l i n i c i a n . The need fo r t h i s r o l e c l a r i f i c a t i o n was e v i d e n t d u r i n g the second and t h i r d f a m i l y i n t e r v i e w s when f a m i l i e s asked ques t ions to draw upon the r e s e a r c h e r ' s c l i n i c a l e x p e r t i s e . These q u e s t i o n s were d e a l t with by e i t h e r r e i t e r a t i n g the c o n s t r a i n t s of the r e s e a r c h e r r o l e , u s ing the q u e s t i o n as an area f o r f u r t h e r d i s c u s s i o n , or p r o v i d i n g c o n c r e t e answers to the i n f o r m a t i o n r e q u e s t e d , as a p p r o p r i a t e . Data A n a l y s i s The f a m i l i e s ' accounts were ana lyzed us ing cons t an t comparat ive a n a l y s i s ( G i o r g i , 1975) . F o l l o w i n g the t r a n s c r i p t i o n of an i n t e r v i e w tape , the conten t was ana lyzed to i d e n t i f y " u n i t s of meaning" w i t h i n the a c c o u n t . I n i t i a l l y each d e s c r i p t i o n was read from a f r e s h p e r s p e c t i v e , h o l d i n g the o ther f a m i l y accounts a p a r t , to a l low the important a spects of tha t f a m i l y ' s exper ience to emerge. Often t imes the themes would not be found i n the ac tua l words of the d e s c r i p t i o n but "between the l i n e s " ( B a r r i t t , Beckman, B l e e k e r & M u l d e r i j , 40 1984) . Once the t r a n s c r i p t was a n a l y z e d , the i d e n t i f i e d meaning u n i t s were then compared with those from the accounts of o ther f a m i l i e s , to i d e n t i f y common themes and v a r i a t i o n s . T h i s a n a l y s i s i n v o l v e d c o n t i n u a l movement back and f o r t h from the t r a n s c r i p t s to the themes, from major themes to small meaning u n i t s . Al though not a l l f a m i l i e s d e s c r i b e d each of the shared themes, those i d e n t i f i e d r e f l e c t e d common p a t t e r n s of meaning across s evera l a c c o u n t s . V a r i a t i o n s i n the accounts were a l so i d e n t i f i e d , which added f u r t h e r i n s i g h t i n t o the meaning of the e x p e r i e n c e . In keeping wi th the c o n s t a n t comparat ive method, data a n a l y s i s o c c u r r e d s i m u l t a n e o u s l y with data c o l l e c t i o n . The emerging themes i d e n t i f i e d from the a n a l y s i s became conten t f o r subsequent i n t e r v i e w s , to deepen the f a m i l i e s ' d e s c r i p t i o n s and to c l a r i f y and v a l i d a t e the r e s e a r c h e r ' s a n a l y s i s . Once a l l i n t e r v i e w s were comple te , a n a l y s i s of the data c o n t i n u e d u n t i l the themes were s y n t h e s i z e d i n t o a broad framework tha t d e s c r i b e d the f a m i l y e x p e r i e n c e of l i v i n g wi th COPD. E t h i c a l C o n s i d e r a t i o n s P a r t i c i p a n t f a m i l i e s d i s c l o s e d t h e i r e x p e r i e n c e s , t h o u g h t s , and f e e l i n g s , and gave t h e i r time and energy to the r e sea rch s tudy . To ensure t h a t the r i g h t s of the f a m i l i e s were p r o t e c t e d , a p r o t o c o l was f o l l o w e d (Canada C o u n c i l , 1977; Canadian Nurses A s s o c i a t i o n , 1972) : 41 C o n f i d e n t i a l i t y was e n s u r e d . The f a m i l i e s ' p a r t i c i p a t i o n in the study was not r e v e a l e d to any p e r s o n s , i n c l u d i n g the r e f e r r i n g p h y s i c i a n . The tapes and t r a n s c r i p t s were coded , any i d e n t i f y i n g marks removed, and s t o r e d i n a l o c k e d f i l i n g c a b i n e t . Access to the data was r e s t r i c t e d to the i n v e s t i g a t o r and the two members of her t h e s i s committee , and the l a t t e r only i n a l i m i t e d manner. Arrangement was made to erase the tapes and shred the t r a n s c r i p t s w i t h i n three to f i v e year s of the s tudy . Measures were taken to r e s p e c t the f a m i l i e s ' r i g h t to refuse p a r t i c i p a t i o n , to refuse answering any q u e s t i o n s , and to withdraw from the study at anyt ime . T h i s was ach ieved through the method of consent d e s c r i b e d e a r l i e r i n the c h a p t e r . The i n f o r m a t i o n l e t t e r and the consent form (see Appendices B and C) informed the f a m i l i e s of t h e i r r i g h t s . Fur thermore , at the beg inn ing of the i n t e r v i e w s , the r e s e a r c h e r r e i t e r a t e d the r i g h t s of the f a m i l i e s i n the process of the r e s e a r c h . The f a m i l i e s ' r i g h t to r e c e i v e h e a l t h care was r e s p e c t e d . R e f e r r a l to a p p r o p r i a t e c o n t a c t s f o r a s s i s t a n c e were made i n two i n c i d e n t s , a s sessed through d i s c u s s i o n wi th f a m i l y members who i n d i c a t e d they were e x p e r i e n c i n g d i s r u p t i n g f a m i l y problems due to cop ing with the i l l n e s s . In format ion reques ted by the f a m i l i e s t h a t was judged as i n a p p r o p r i a t e fo r the i n t e r v i e w process was p r o v i d e d to the f a m i l i e s once the i n t e r v i e w s were comple ted . These r e l a t e d to areas such as m e d i c a t i o n reg ime, e x e r c i s e , e n e r g y - s a v i n g t e c h n i q u e s , handicapped p a r k i n g , 42 r e s p i r a t o r y r e h a b i l i t a t i o n programs a v a i l a b l e i n the community, and of most s i g n i f i c a n c e , the exper i ence s of o ther f a m i l i e s with COPD. An agreement was made to share the f i n d i n g s of the study with the p a r t i c i p a n t f a m i l i e s by sending them a w r i t t e n summary of the r e sea rch f i n d i n g s once the t h e s i s was comple ted . C o n f l i c t arose fo r the r e s e a r c h e r due to the tempta t ion to step i n t o a t h e r a p e u t i c r o l e d u r i n g the i n t e r v i e w p r o c e s s , tha t i s , to f u l f i l l the r o l e of a c l i n i c a n r a t h e r than t h a t of a r e s e a r c h e r . Al though i t was not the goal of the f a m i l y i n t e r v i e w s , the t h e r a p e u t i c va lue of the exper ience was communicated by the f a m i l i e s . F a m i l i e s i n d i c a t e d t h a t through the i n t e r v i e w s the members had ach ieved a g r e a t e r under s t and ing of o ther members' thoughts and f e e l i n g s . Most f a m i l i e s r e p o r t e d tha t i t was the f i r s t time the members had d i s c u s s e d t h e i r exper i ence toge ther as a f a m i l y u n i t . Summary T h i s chapter o u t l i n e d the process undertaken to apply the phenomenological method i n t h i s study of the f a m i l y exper i ence with COPD. The outcome f i n d i n g s , the f a m i l i e s ' accounts of t h e i r e x p e r i e n c e s , t h e i r d i s c u s s i o n and s i g n i f i c a n c e , f o l l o w i n the subsequent c h a p t e r s . CHAPTER FOUR F a m i l i e s ' Accounts T h i s chapter addresses the f i n d i n g s of the r e sea rch s tudy . Fami ly l i f e wi th c h r o n i c o b s t r u c t i v e pulmonary d i sea se i s d e s c r i b e d and e x p l a i n e d through an i n t e g r a t i o n of the p a r t i c i p a n t f a m i l i e s ' accounts and the r e s e a r c h e r ' s a n a l y s i s and i n t e r p r e t a t i o n . As s t a t e d i n Chapter T h r e e , the data were ana lyzed through a process of c o n s t a n t comparat ive a n a l y s i s . Al though each f a m i l y ' s s to ry was u n i q u e , t h i s process enabled the r e s e a r c h e r to i d e n t i f y the commonal i t i e s among the f a m i l y a c c o u n t s . These data were then developed i n t o i n t e r p r e t i v e themes t h a t d e s c r i b e the meaning of the exper i ence 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 . For t h i s t h e s i s , the r e s e a r c h e r s e l e c t e d and developed three of the c e n t r a l themes to d e s c r i b e and e x p l a i n f a m i l y l i f e with COPD. The f i r s t theme, " d i s e a s e - d i c t a t e d f a m i l y l i f e , " p r o v i d e s the founda t ion from which the d e s c r i p t i o n b u i l d s . Here , the p e r v a s i v e c o n t r o l exer ted by COPD i s addressed by d e s c r i b i n g four a spects of f a m i l y l i f e d i c t a t e d by the d i s e a s e . The second theme, " i s o l a t i o n , " b u i l d s upon t h i s content by d e s c r i b i n g the i s o l a t i o n t h a t accompanies the i l l n e s s e x p e r i e n c e , f o r the f a m i l y group and fo r the i n d i v i d u a l members w i t h i n the group. The f i n a l theme, " f a m i l y work , " e n r i c h e s the d e s c r i p t i o n by e x p l a i n i n g four c h a l l e n g e s the f a m i l i e s l i v i n g with COPD face and the cop ing s t r a t e g i e s they employ to deal 44 wi th them. These three themes and the subthemes of each are developed throughout the f o l l o w i n g d e s c r i p t i o n of f a m i l y l i f e with C O P D . 1 D i s e a s e - D i c t a t e d Fami ly L i f e When the f a m i l i e s r e l a t e d t h e i r exper i ence s of l i v i n g with COPD, they p r o j e c t e d the sense of l i v i n g wi th a d i sea se t h a t i n s i d i o u s l y enter s t h e i r l i v e s , c l o s i n g i n more and more on f a m i l y l i f e as i t p r o g r e s s e s : H: " I t a l l happened so g r a d u a l l y t h a t we were j u s t t rapped before we - - IW: r e a l i z e d i t . " The f a m i l y g r a d u a l l y comes to f ee l su r rounded , owned by the demands of the i l l member's lung d i s e a s e . That the d i sea se dominates the i l l member's l i f e and i n tu rn dominates f a m i l y l i f e i s i l l u s t r a t e d by t h i s i l l woman's comment: " E v e r y t h i n g seems to be a c c o r d i n g to your every whim. You d o n ' t want i t tha t way, but t h a t i s j u s t the way i t i s . " The powerful grasp of COPD upon the f a m i l y o r i g i n a t e s from the nature of the d i sea se i t s e l f . COPD a t t a c k s the essence of l i f e - - b r e a t h . The profound t h r e a t t h i s poses was c l e a r l y and s u c c i n c t l y cap tured by one man's comment: "You c a n ' t stop b r e a t h i n g or you d i e . " The 1 i f e - threaten ! * ng nature and the s u f f o c a t i n g symptoms of the d i sea se h i g h l i g h t the COPD member's a b i l i t y to breathe so tha t i t takes p r i o r i t y w i t h i n 1. The f o l l o w i n g a b b r e v i a t i o n s are used i n the body of t h i s chap te r to i d e n t i f y the speakers be ing quoted : IW: 111 woman; IM: 111 man; W: W i f e ; H: Husband; D: Daughter ; S: Son; R: R e s e a r c h e r . 45 the f a m i l y . The whole f a m i l y group must conform to a l i f e s t y l e aimed at a v o i d i n g b r e a t h l e s s n e s s . I t i s not a c h o i c e t h a t i s d e l i b e r a t e d w i t h i n the f a m i l y , but one t h a t emerges from n e c e s s i t y . The n e c e s s i t y of adopt ing t h i s l i f e s t y l e i s e v i d e n t in t h i s passage: IM: I was pant ing at f i r s t , wasn ' t I? (W: Yeah) Short of breath and p a n t i n g . You know, as though y o u ' d run around 100 ya rds i n ten seconds . R: So t r y i n g to get your b r e a t h . (W: Yeah) IM: But now, you you d o n ' t pant now. P a n t i n g , you d o n ' t do any of t h a t now, because you d o n ' t do anyth ing tha t gets you to t h a t s t age . (R: Ahh) 'Cause you know you c a n ' t do t h a t . You know t h a t i f you got to t h a t s t age , t h a t ' d be i t . . . . R: So you know your l i m i t , and so you avo id pushing y o u r s e l f ? IM: Oh, you b e t . (W: No doubt about i t . ) You have t o . Y o u ' r e reminded of i t r i g h t away. Thus , to avo id b r e a t h l e s s n e s s and accommodate fo r the changed COPD member, the e n t i r e f a m i l y assumes a d i s e a s e -d i c t a t e d l i f e s t y l e . What t h i s e n t a i l s was c l e a r l y a r t i c u l a t e d by the f a m i l i e s : A) a b r e a t h e r - p r o t e c t e d env i ronment , B) an energy-economy, C) a p r e s e n t - t i m e o r i e n t a t i o n , and D) a l t e r e d r o l e s w i t h i n the f a m i l y . In order to d e s c r i b e the l i f e s t y l e tha t i s d i c t a t e d by COPD, each of these four a spects i s addressed i n the f o l l o w i n g passages . A. Fami ly L i f e w i t h i n a B r e a t h e r - P r o t e c t e d Environment The f a m i l i e s e x p l a i n e d t h a t the s u f f e r e r s of COPD need an environment t h a t i s " b r e a t h e r - p r o t e c t e d , " t h a t i s , an environment c o n t r o l l e d fo r anyth ing t h a t provokes shor tnes s of 46 breath or c o u l d extend the lung damage: IM: I'm not even supposed to go near anybody e l s e who does smoke, you see . . . . The doc tor has g iven me s t r i c t order s to stay wel l away from anyth ing or anybody tha t causes any o d o r s , or smoke or gases or i m p u r i t i e s i n the a i r or a n y t h i n g . As a r e s u l t , the environment of a l l f a m i l y l i f e must be b r e a t h e r - p r o t e c t e d . M a i n t a i n i n g an atmosphere t h a t i s as i r r i t a n t f ree as p o s s i b l e becomes of foremost import i n the f a m i l y . T h i s was obvious by the emphasis the f a m i l i e s p l aced on d e s c r i b i n g the behav iours they used to ach ieve t h i s g o a l . For example, because r e s p i r a t o r y i n f e c t i o n s compromise the COPD member's a l r eady l i m i t e d lung f u n c t i o n , the f a m i l y members a v o i d i n t r o d u c i n g i n f e c t i o n s i n t o the f a m i l y env i ronment : D: And I t h i n k , you know, i f you even suspect t h a t y o u ' r e g e t t i n g a s c r a t c h y t h r o a t or anyth ing l i k e t h a t , you c a n ' t come, you know, w i t h i n a hundred m i l e s . . . . D2: You take c o l d s fo r granted u n t i l y o u , you know y o u ' r e c a r r y i n g l e t h a l weapons. The i n t e n s i t y of the t h r e a t t h i s evokes i s o b v i o u s . An i n f e c t i o n not only robs the i l l member of a i r , i t may mean h i s / h e r d e a t h . F u r t h e r m o r e , f a m i l y members stop i r r i t a n t p roduc ing h a b i t s , such as wearing perfume and f r y i n g foods . Because smoke i s one of the most potent of these i r r i t a n t s , t h i s h a b i t must e i t h e r be stopped or i s o l a t e d : H: I smoke, s t u p i d l y , but I smoke out on the b a l c o n y . 47 IM: But my wife spends h a l f her l i f e i n the k i t c h e n now. We have a k i t c h e n you can smoke i n because t h e r e ' s no c o l d a i r r e g i s t e r t h e r e . So we c l o s e t h i s door and the o ther door , and open the back door . Then i f the furnace comes on i t c a n ' t suck the smoke down and puf f i t up around the house. I t j u s t goes out the back door . As i l l u s t r a t e d by these q u o t a t i o n s , there i s no q u e s t i o n as to what takes precedence . The smokers i n the f a m i l y must dev i se ways to p r o t e c t the COPD member i f they are to c o n t i n u e t h e i r h a b i t , f o r an i r r i t a n t f ree environment takes p r i o r i t y . In a d d i t i o n to c o n t r o l l i n g i r r i t a n t s and i n f e c t i o n , the f a m i l y members r e s t r a i n the e x p r e s s i o n of emot ion . For they know t h a t i n t e n s e emotions are a l so b r e a t h e r - h o s t i l e : H: As long as my w i f e ' s nerves are rea sonab ly c a l m , and she ' s not upset or w o r r i e d about something , the b r e a t h i n g i s a l o t b e t t e r . But when she gets upse t , for whatever r e a s o n , I mean I c o u l d name a thousand t h i n g s . I t c o u l d , might be noth ing r e l a t e d to the i l l n e s s , I mean, i t c o u l d be something happening o u t s i d e , or something t h a t I 've done or something the f a m i l y has done or h a s n ' t done type of t h i n g , and y o u ' r e IW: A l l of a sudden - - j u s t c a n ' t b r e a t h e . W: T h a t ' s another t h i n g , no upset - - you know. He t r i e s to avo id any upset i n any way, shape or form. Because (IM: Whether i t ' s good or bad) . . . R ight out of breath he goes - - i n any e x c i t e m e n t . Indeed, the COPD member's need f o r an i r r i t a n t f ree environment imposes p e r v a s i v e r e s t r i c t i o n s on the f a m i l y . Much of f a m i l y l i f e becomes c o n f i n e d to a b r e a t h e r - p r o t e c t e d envi ronment. B. Fami ly L i f e w i t h i n an Energy Economy 48 The f a m i l i e s i n d i c a t e d t h a t COPD d i m i n i s h e s the i l l member's c a p a c i t y fo r a c t i v i t y . E x t r a energy i s expended to b r e a t h e , at the same time t h a t the c a p a c i t y f o r oxygenat ion i s r e s t r i c t e d ; so only l i m i t e d energy i s a v a i l a b l e fo r o ther a c t i v i t i e s . C o n s e q u e n t l y , the f a m i l i e s f i n d t h e i r l i f e as a group d i c t a t e d by the l i m i t e d energy c a p a c i t y of the i l l f a m i l y member. In o ther words , f a m i l y a c t i v i t i e s are c o n f i n e d w i t h i n an "energy economy," the c a p a c i t y of which i s determined by tha t of the COPD member: IW: Even a d inner par ty i s a lmos t , wel l i t ' s i m p o s s i b l e . I t i s i m p o s s i b l e r e a l l y , I c a n ' t do i t . H: C a n ' t p lan i t or a n y t h i n g . IW: I'm i n bed u s u a l l y by 8:00 at the very l a t e s t , and u s u a l l y by 7 :00 . And you j u s t c a n ' t go f o r d inner and expect people to have you f o r d i n n e r . When t h e y ' r e s t a r t i n g , as I say , when y o u ' r e ready to go to bed. So our d i n n e r p a r t i e s are more l i k e l a t e l u n c h e s . (D: Yea , u s u a l l y i n the l a t e a f t e r n o o n . ) So t h a t s tops t h a t r i g h t t h e r e . As fo r any o ther k ind of a c t i v i t y , I c a n ' t t h i n k of any th ing e l s e we do, except go out and shop once i n a w h i l e . H: T h e r e ' s no p o i n t i n us g e t t i n g a t r a i l e r or a motorhome, because they are f i n e and dandy when you are h a u l i n g them a long the highway. But when you stop at n i g h t , y o u ' v e go t t a do something . And t h a t something r e q u i r e s w a l k i n g . (R: energy) Energy . I t ' s a l l very wel l to d r i v e a motorhome to the Grand Canyon, you c a n ' t d r i v e the t h i n g r i g h t up to the edge and have a look at i t . You 've got to park i t back there and walk to the edge. Any a c t i v i t y of the f a m i l y group consumes a p o r t i o n of a l i m i t e d re source - - energy . That the f a m i l y must be c o n s t a n t l y aware of energy was i l l u s t r a t e d by t h e i r emphasis on the 4 9 n e c e s s i t y to p lan and o r g a n i z e f a m i l y a c t i v i t i e s . A c t i v i t i e s are planned fo r the maximum use of minimum energy . These l i m i t a t i o n s on the f a m i l y ' s a c t i v i t i e s and the p l a n n i n g e f f o r t s necessary are r e f l e c t e d i n t h i s passage: W: W e l l , you c a n ' t go any p l a c e . L i k e i f you go shopp ing , you c a n ' t walk very f a r . He has to stop and take a breath a l l the t i m e . T h a t ' s not too bad, we have a l l day to do t h a t . When we do go we have a pa rk ing t i c k e t on our c a r , so you can park and you walk s l o w l y . Energy has become a l i m i t e d commodity t h a t must be r a t i o n e d fo r use in the most va lued a c t i v i t i e s - - i f those are to be a c t i v i t i e s of a l l the members of the f a m i l y group. The extent of the COPD member's lung d i sea se e s t a b l i s h e s an energy economy t h a t d i c t a t e s the a c t i v i t i e s now p o s s i b l e fo r the fami 1y. C. Fami ly L i f e w i t h i n a Present-Time O r i e n t a t i o n Another a spect of f a m i l y l i f e d i c t a t e d by COPD i s an o r i e n t a t i o n to l i f e i n the p r e s e n t . T h i s pre sent time o r i e n t a t i o n i s l i n k e d to a sense of u n c e r t a i n t y t h a t pervades f a m i l y l i f e . F i r s t l y , the f a m i l y cannot p r e d i c t how the COPD member w i l l be f e e l i n g , or what s/he w i l l have the a b i l i t y to do, from day to day or hour to hour , as these f o l l o w i n g passages i ndi c a t e : W: I t ' s a funny t h i n g t h i s emphysema, you know. I t r e a l l y i s . I t ' s up and down. 50 D: You have days when you can do more than you can do other days . IW: Oh y e a h . Some are b e t t e r than o t h e r s . D: Some days you c a n ' t do any th ing but s i t i n a c h a i r . One man cap tured the u n p r e d i c t a b i l i t y of the symptoms and the u n c e r t a i n t y with which the f a m i l y l i v e s : H: I t h i n k you can sum i t up i n t h a t , i s t h a t everyday , fo r us , i s a new day. We d o n ' t know what to e x p e c t . No matter what i s done to c o n t r o l the environment or a c t i v i t y , the f a m i l y cannot be sure what might a f f e c t the i l l member's b r e a t h i n g : IM: Even the weather change was a b i g f a c t o r . Even though I wasn ' t doing a n y t h i n g , j u s t a change i n the weather would make a d i f f e r e n c e . The i n f l u e n c e of something as u n c e r t a i n as the weather emphasizes the u n p r e d i c t a b i l i t y of the d i sea se to which the e n t i r e f a m i l y group must attempt to c o o r d i n a t e i t s l i f e . Because the f a m i l y a c t i v i t i e s are c o n t i n g e n t on the i l l member's c a p a b i l i t i e s , the u n p r e d i c t a b i l i t y of the symptoms fo rce the f a m i l y to focus on the p r e s e n t . S e c o n d l y , the very l i f e of the COPD member i s f r a g i l e . Even a small change can upset t h i s uns tab le b a l a n c e . The f a m i l y r e c o g n i z e s t h a t each acute i l l n e s s c o u l d be the l a s t . That the f a m i l y l i v e s wi th a c o n s t a n t awareness of the p o s s i b i l i t y of i n t e n s e i l l n e s s and death i s e v i d e n t : D: W e l l , and e v e r y t i m e , everyt ime someone s t a r t s to f ee l lousy i n a s i t u a t i o n l i k e t h i s , you say to y o u r s e l f , t o o , w e l l , you know. How bad i s i t going to get? (IW: Yeah) You know, no one j u s t gets a c o l d , you know. I t ' s always a major c a t a s t r o p h e . So you j u s t - - Y o u ' r e always w a i t i n g fo r the o ther shoe to drop . (R: Not knowing what the fu ture h o l d s . L i k e , 51 what ' s going to happen with t h i s one?) T h a t ' s r i g h t . You know, i s t h i s going to be a s c r a t c h y t h r o a t or i s i t going - - you j u s t d o n ' t know. S: I t h i n k the major e f f e c t i s m e n t a l , i n uh - - hoping tha t you - - the r e a l i z a t i o n , I guess , tha t the next a t t ack may be the l a s t one. You never know with each one i f she ' s going to p u l l t h r o u g h . Because the r i s k s of i n v e s t i n g i n the fu ture have r i s e n too h i g h , the f a m i l y l e a r n s to focus on the p r e s e n t . A f t e r a l l , the fu ture may not i n c l u d e the i l l member. Thus , with l i t t l e p r e d i c t a b i l i t y or s t a b i l i t y to the i l l member's h e a l t h , the f a m i l y has no c h o i c e but to l i v e i n the p r e s e n t . The "here and now" becomes the only p s y c h o l o g i c a l l y comfor tab le r e a l i t y to them. T h i s l i m i t a t i o n to the present was i l l u s t a t e d by the f a m i l i e s ' d e s c r i p t i o n s of t h e i r i n a b i l i t y to e m o t i o n a l l y i n v e s t i n fu ture p l a n s . Most f a m i l i e s make few p l a n s , o ther s c o n t i n u e to p l a n , but f o r a l l , p lans are t e n t a t i v e , as the f o l l o w i n g q u o t a t i o n s i n d i c a t e : IM: But i t i s hard to make p lans j u s t day to day. I f I do make p lans to do a n y t h i n g , i t ' s a l l q u a l i f i e d by how I f ee l when the time comes. IM: I c a n ' t make any p lans ahead e i t h e r because i t depends on how you f e e l . I t seems funny, you can do so good and t h e n , b i n g o ! Ten minutes l a t e r , y o u ' r e down. D: So you tend to keep e v e r y t h i n g r e a l l y f l e x i b l e , and do t h i n g s more at the l a s t minute , I would say . (H: Yeah, t h a t ' s r i g h t . ) Have to be spontaneous . T h i s p e r s i s t e n t sense of t e n t a t i v e n e s s t h a t c r e a t e s an o r i e n t a t i o n to the p r e s e n t , a l lows the f a m i l y members l i t t l e 52 o p p o r t u n i t y fo r indepth involvement i n a c t i v i t i e s . As d e s c r i b e d by one man, they l i v e "a s u p e r f i c i a l l i f e . " Thus , not only d i d the f a m i l i e s d e s c r i b e a d i sea se t h a t p r e s c r i b e s the f a m i l y ' s environment and c o n t r o l s i t s a c t i v i t i e s - - i t even d i c t a t e s an o r i e n t a t i o n to t i m e . In a d d i t i o n to these e x t e n s i v e i m p o s i t i o n s on f a m i l y l i f e are demands on f a m i l y r o l e s . D. A l t e r e d Roles w i t h i n the Fami ly Because a b i l i t i e s of the COPD member have changed, s/he can no longer f u l f i l l r o l e s p r e v i o u s l y e s t a b l i s h e d w i t h i n the f a m i l y . As a r e s u l t , p re s sure b u i l d s f o r o ther f a m i l y members to accommodate and compensate f o r the c u r t a i l e d a b i l i t i e s of the i l l member. The ex tent to which r o l e s h i f t s are r e q u i r e d depends i n par t on the degree of l i m i t a t i o n . The g r e a t e r the l i m i t a t i o n , the l e s s ab le i s the COPD member to c a r r y out t a s k s . The f o l l o w i n g passages i n d i c a t e the r o l e a l t e r a t i o n s tha t are n e c e s s i t a t e d by COPD: W: He c o u l d n ' t look a f t e r our boat anymore. We have to have a ga rdener . . . . IM: Oh y e a h , I c a n ' t do any th ing now. W: He had been known to even p a i n t the house, but t h a t ' s out now. I t h i n k he must get very f r u s t r a t e d because he sees t h i n g s t h a t should be done, and h e ' s got the t o o l s to do i t (H: Oh, I do . ) But he c a n ' t do i t . W: He used to be able to run around and do t h i s , t h a t , and the o t h e r , and i t a f f e c t s him tha t he c a n ' t . And tha t I'm having to do most of the shopp ing , and tha t s o r t of t h i n g . . . . T h e r e ' s l o t s of t h i n g s t h a t he 53 can do. He washes the d i s h e s , f o r i n s t a n c e , and t h i n g s l i k e t h a t . But vacuuming he c o u l d n ' t do. . . IM: W e l l , y o u ' v e got to do t h i n g s tha t you w e r e n ' t used to doing b e f o r e . . . . I never thought about doing d i shes yea r s ago, when you were doing something more manly. These r o l e a l t e r a t i o n s w i t h i n the f a m i l y are c o m p l i c a t e d by the v a r i a b i l i t y i n the i l l member's c a p a b i l i t e s . At one time the COPD i l l member can c a r r y out a c e r t a i n t a s k , whi le days or weeks l a t e r i t i s i m p o s s i b l e : IM: Simple l i t t l e t h i n g l i k e going fo r the paper , newspaper (W: J u s t at the c o r n e r ) at the c o r n e r . Sometimes I can go up t h e r e , and have no t r o u b l e and come back. . . . Other t imes I can only get h a l f way, and I 've got to s tand f o r a few moments and come back. The r ever se may a l so happen, g r a d u a l l y the COPD member may rega in the a b i l i t y to do tasks t h a t were p r e v i o u s l y beyond p o s s i b i 1 i t y . For most f a m i l i e s these adjustments i n r o l e s evo lve almost wi thout c o n s c i o u s e f f o r t : IW: Well e s p e c i a l l y , you know, your Daddy's c h i e f cook and b o t t l e washer. Now he does the cooking and the c l e a n i n g and the d u s t i n g and the l a u n d r y , and you mention i t , he does i t . R: And what was i t l i k e before? H: Oh, wel l I - - I always helped (W: because we were both working) with the housework, y e a h . But she d i d a l l the c o o k i n g . But then when I saw she was g e t t i n g , oh , you c o u l d see she was going d o w n h i l l . (R: Mhmm) Then I s t a r t e d to hang around the k i t c h e n more, 'cause I knew t h a t I - - (D: you were going to have to --) Sure . And t h a t ' s another t h i n g , i t , i t wasn ' t a d e c i s i o n c o n s c i o u s l y made. D: I t ' s a growing t h i n g . S: You g r a d u a l l y get i n t o , tha t - - (W: I t j u s t happens. ) As the passage i l l u s t r a t e s , the s u b t l e r o l e a l t e r a t i o n s r e l a t e to the s c a r c e l y n o t i c e a b l e d e t e r i o r a t i o n i n the COPD member's h e a l t h . The o ther f a m i l y members g r a d u a l l y move i n to compensate as the i l l member's c a p a b i l i t i e s d e c l i n e . For o ther f a m i l i e s , however, these r o l e s h i f t s c r e a t e much more t e n s i o n and s t r e s s . Al though the need fo r the a l t e r a t i o n s are c l e a r , the compensation r e q u i r e d w i t h i n the f a m i l y i s r e s i s t e d . The i l l member may not r e a d i l y g ive up tasks and the wel l members may r e s i s t assuming the vacated r o l e s , as i s i n d i c a t e d i n the f o l l o w i n g passage: IW: I have a hard t i m e . I d o n ' t wash the f l o o r s as o f ten as I used t o . And I d o n ' t c l e a n my oven as o f ten as I used t o . I f i n d those two t h i n g s h a r d . Umm, I d o n ' t wash windows as o f t e n . What e l s e ? (H: Me n e i t h e r . ) No, he d o e s n ' t he lp one darn b i t . ( l a u g h t e r ) He ' s not f i l l i n g i n the spaces t h a t I'm l e a v i n g . He ' s not doing any th ing around h e r e . He ' s going f i s h i n g ! The t e n s i o n i n the f a m i l y i s masked by the use of humour t h a t i s used to enable the woman to r e l a t e her f e e l i n g s to the r e s e a r c h e r . N o n e t h e l e s s , the s t r e s s r e l a t e d to r o l e a l t e r a t i o n s w i t h i n the f a m i l y i s o b v i o u s . Regardles s of the ease of t r a n s i t i o n , r o l e s h i f t s must be made, not out of c h o i c e , but out of n e c e s s i t y . These are en forced by the very nature of the changes t h a t accompany COPD. These four subthem.es p r e s e n t e d : a b r e a t h e r - p r o t e c t e d env i ronment , an energy economy, a p r e s e n t - t i m e o r i e n t a t i o n , and a l t e r e d r o l e s , ev idence the p e r v a s i v e i m p o s i t i o n s of COPD on f a m i l y l i f e . A l though the i n t e n s i t y of the exper i ence s d e s c r i b e d v a r i e d from f a m i l y to f a m i l y , these four a spects of l i f e , d i c t a t e d by COPD, were found to be common acros s a l l f a m i l y a c c o u n t s . The f a m i l i e s were able to c l e a r l y a r t i c u l a t e both the changes t h a t COPD b r i n g s and the consequences of these changes . From the d e s c r i p t i o n s of t h e i r i l l n e s s e x p e r i e n c e , a powerful sense of i s o l a t i o n emerged. B u i l d i n g upon the conten t from the f i r s t theme, the f o l l o w i n g theme d e s c r i b e s and e x p l a i n s the i s o l a t i o n t h a t accompanies f a m i l y l i f e wi th COPD. I s o l a t i on The f a m i l i e s communicated t h e i r exper i ence tha t a sense of i s o l a t i o n i s i n t i m a t e l y a s s o c i a t e d wi th l i v i n g with COPD. To present t h i s complex a spect of the f a m i l y e x p e r i e n c e , t h i s s e c t i o n i s o r g a n i z e d i n r e l a t i o n to two dimensions of the f a m i l y e x p e r i e n c e : A) the i s o l a t i o n f o r the f a m i l y group, and B) the i s o l a t i o n of the i n d i v i d u a l members w i t h i n the f a m i l y . A . I s o l a t i o n f o r the Fami ly Group The f a m i l i e s ' d e s c r i p t i o n s i n d i c a t e d t h a t i s o l a t i o n f o r the f a m i l y group emerges from three pr imary s o u r c e s : the r e s t r i c t i o n s i n f a m i l y l i f e t h a t r e s u l t from accommodating the COPD member's needs , the f a m i l y ' s attempts to m a i n t a i n normalacy i n s o c i a l i n t e r a c t i o n s , and the l ack of o u t s i d e r s ' under s t and ing of what l i v i n g wi th COPD means f o r the f a m i l y . The meaning of each of these f o r c e s i s e x p l o r e d i n the f o l l o w i n g passages . 56 A major i s o l a t i n g f o r c e develops as the f ami ly assumes a l i f e s t y l e compat ib le wi th COPD. The very behav iours t h a t support the needs and accommodate f o r the changes i n the i l l member f o s t e r i s o l a t i o n f o r the f a m i l y group. F i r s t , a v o i d i n g s i t u a t i o n s t h a t t h r e a t e n the i l l member's a b i l i t y to breathe f o r c e s the f a m i l y to i n s u l a t e i t s e l f from many aspects of i t s p r e v i o u s env i ronment , p a r t i c u l a r l y those tha t are b r e a t h e r - h o s t i l e . Al though i r r i t a n t s can be c o n t r o l l e d w i t h i n the f a m i l y home, they cannot be as e a s i l y c o n t r o l l e d o u t s i d e the home. For example, the potent i r r i t a n t s of second-hand smoke and automobi le exhaus t , i n t o l e r a b l e to the COPD member, are widespread environmenta l p o l l u t a n t s . In order to p r o t e c t a g a i n s t t h e s e , the f a m i l y withdraws i n t o i t s b r e a t h e r - p r o t e c t e d w o r l d . However, t h i s a c t i o n a l so i s o l a t e s the f a m i l y . The u n p r e d i c t a b i l i t y of the i l l member's a b i l i t y to breathe compounds the i s o l a t i o n t h a t r e s u l t s from the attempts to avo id b r e a t h l e s s n e s s . In new c i r c u m s t a n c e s , the COPD member becomes even more v u l n e r a b l e to b r e a t h l e s s n e s s . One way the f a m i l y can t h e r e f o r e a v o i d t h r e a t e n i n g s i t u a t i o n s i s to withdraw i n t o safe c o n t r o l l e d env i ronment s , where the g r e a t e s t degree of c o n t r o l can be m a i n t a i n e d . But t h i s again i s an i s o l a t i n g b e h a v i o u r . The more f r a g i l e the i l l member's a b i l i t y to b r e a t h e , the g r e a t e r i s the need to c o n f i n e f a m i l y l i f e to p r o t e c t e d env i ronment s , and as a r e s u l t , the g r e a t e r the i s o l a t i o n e x p e r i e n c e d by the f a m i l y . One f a m i l y had become so wary of 57 the i l l member's response to d i f f e r e n t s i t u a t i o n s t h a t a l l f a m i l y l i f e took p l a c e , l i t e r a l l y , i n s i d e the home: D: I remember one of the f i r s t t imes we r e a l i z e d t h a t , we went to v i s i t f r i e n d s and we had to park about a b lock away. And then coming o u t , we got about halfway around the b lock and then Dad c o u l d n ' t get h i s b r e a t h . And so we had to run and get the c a r . I t ' s r e a l l y s c a r e y . IM: Rather than face t h a t you k i n d of s tay at home. . . . W: You know, because you are scared of g e t t i n g caught o u t . You know, maybe the car breaks down, and i t ' s very dark , and he c o u l d n ' t get h i s b r e a t h , you know. D: And I t h i n k a f t e r awhi le you j u s t stop t h i n k i n g about i t . (IM: . . . You j u s t f o r g e t about i t . ) The passage not only d e p i c t s the i s o l a t i o n t h a t r e s u l t s , but the r e s i g n a t i o n of the f a m i l y to i t s i s o l a t i o n . I t i s as i f there i s no c h o i c e - - i t i s j u s t a f a c t . Heightened r i s k i s seen to be i n v o l v e d with v e n t u r i n g away from safe env i ronment s , and i s r e f l e c t e d i n one f a m i l y ' s d e c i s i o n not to go on a three hour t r i p because there are seen to be too many u n c o n t r o l l a b l e f a c t o r s : IM: We used to go over to V i c t o r i a . (W: He ' s got a s i s t e r over t h e r e . ) But i t ' s three year s s i n c e we went, and i t ' s a s imple matter t h a t we d o n ' t want to put anybody out u n n e c e s s a r i l y . And on the o ther hand, we d o n ' t want to get s t u c k , having to get an ambulance on the way t h e r e . So we pack the idea i n . Not because we d o n ' t want to go - - but because we would be unable to complete i t , p r o b a b l y . Or too s i c k to t r a v e l , they used to say year s ago. W: We've got an o f f e r to go at Chr i s tmas with h i s nephew. He 'd come r i g h t to the door with a car and take us r i g h t on the boa t . But , t h a t ' s a l l r i g h t , tha t sounds f i n e . But i f i t s t a r t e d to snow, he c o u l d n ' t go . . . (IM: - - c o u l d stop the ambulance coming down) - - w a i t i n g around i n t r a f f i c , you know, in the car and the fumes. 58 Another f a m i l y i l l u s t r a t e d the need fo r a safe environment by c o n t i n u i n g to go to the same p lace fo r i t s twice y e a r l y h o l i d a y . Al though the wife i n d i c a t e d t h a t she would r a t h e r go to a d i f f e r e n t p l a c e , the i l l man p r e f e r r e d to stay wi th a known env i ronment . His need to have a known safe environment took p r i o r i t y : IM: T h e r e ' s a whole s e c t i o n of M a u i , i n the c e n t e r par t we stay i n , t h a t i s f l a t . I d o n ' t t h i n k any par t of i t i s more than three f ee t above sea l e v e l . You d o n ' t have h i l l s to c l i m b , the beach i s f l a t . And t h a t ' s p a r t l y why we - - why I l i k e to go t h e r e . . . . (W: I ' d l i k e to go to M e x i c o . ) Thus , the cop ing behav iours used to p r o t e c t the i l l member from becoming b r e a t h l e s s en force a form of i s o l a t i o n on the f a m i l y , for i t i s c o n f i n e d to b r e a t h e r - p r o t e c t e d env i ronment s . In a d d i t i o n to the i s o l a t i n g fo rce of l i v i n g w i t h i n a b r e a t h e r - p r o t e c t e d env i ronment , the f a m i l y ' s energy r e s t r i c t i o n exer t s an i s o l a t i n g f o r c e . For w i t h i n i t s energy economy, the f a m i l y has l i m i t e d c a p a c i t y fo r a c t i v i t y g e n e r a l l y , and s p e c i f i c a l l y , l i m i t e d energy to expend i n v a r i o u s a c t i v i t i e s o u t s i d e the home. When energy i s extremely l i m i t e d , the f a m i l y can become e s s e n t i a l l y c o n f i n e d to the home: R: You mentioned before the s o c i a l a s p e c t , t r y i n g to s t i l l c a r r y on a s o c i a l l i f e t h a t everybody e n j o y s . IW: We d o n ' t . D: We s i t and watch T . V . H: I t h i n k t h a t ' s the s imple answer. IW: A n y t h i n g tha t i s done i s g e n e r a l l y done h e r e . I f we 're going to v i s i t , and t h a t ' s a l l we do, we j u s t - -D: - - s i t and t a l k , or watch T . V . 59 As t h i s passage e x p l i c i t l y conveys , the reduced energy c a p a c i t y of the COPD member can i s o l a t e the e n t i r e f a m i l y w i t h i n c o n f i n e d e n e r g y - l i m i t e d b o u n d a r i e s . F u r t h e r m o r e , the behav iours used to accommodate f o r the needs of the COPD member can i s o l a t e the f a m i l y from i t s s o c i a l w o r l d . The l i f e s t y l e changes compat ib le wi th COPD a r e , a f t e r a l l , not compat ib le with a s o c i a l wor ld t h a t i s t y p i c a l l y b r e a t h e r - h o s t i l e , a c t i v i t y - b a s e d , and f u t u r e - o r i e n t e d . The f a m i l y r e q u i r e s a b r e a t h e r - p r o t e c t e d env i ronment , y e t i n most s o c i a l s i t u a t i o n s there w i l l be people smoking. The f a m i l y has a l i m i t e d c a p a c i t y fo r energy-consuming a c t i v i t i e s , y e t any s o c i a l a c t i v i t y i s an energy-consuming e x p e r i e n c e . The f a m i l y i s o r i e n t e d to the p r e s e n t , y e t s o c i a l i z i n g wi th o t h e r s r e q u i r e s fu ture p l a n n i n g . As the d i sea se p r o g r e s s e s , so do the b a r r i e r s to s o c i a l i z a t i o n . Because of the smoking r e s t r i c t i o n s and energy l i m i t a t i o n , not on ly i s i t d i f f i c u l t f o r the f a m i l y to go out to p a r t i c i p a t e i n s o c i a l a c t i v i t i e s , i t i s a l so d i f f i c u l t to have v i s i t o r s i n t o the home: W: We d o n ' t have people i n . We used to p lay cards and we had people i n . IM: Two or three c o u p l e s , sometimes a l l of them, sometimes j u s t one o ther c o u p l e . We'd s i t and p lay cards at n i g h t and have a couple of d r i n k s , and we a l l smoked. T h a t ' s been cut out c o m p l e t e l y . I d o n ' t have the energy i n the evenings now, i n the f i r s t p l a c e . D: A l s o t o o , when y o u ' v e got people o v e r , people smoke. (IW & H: T h a t ' s r i g h t . ) So, t h a t ' s a problem a g a i n . (D2: Yeah, you c a n ' t smoke i n h e r e . ) So l a r g e dos are out t o o . (IW: I t ' s j u s t exhaus t ing anyways.) And i t makes i t very d i f f i c u l t now to go to somebody's house. The t e n t a t i v e n e s s a s s o c i a t e d wi th the d i sea se a l so f o s t e r s i s o l a t i o n . Other people are not o r i e n t e d to t e n t a t i v e or l a s t minute p l a n n i n g , which makes i t d i f f i c u l t to arrange s o c i a l g a t h e r i ngs: W: You c a n ' t ask people i n fo r d i n n e r , arrange i t , ' cause I d o n ' t know how h e ' s going to f e e l . He says wai t and see . Well t h a t ' s no good. As w e l l , i t i s d i f f i c u l t f o r the f a m i l y to a t t end s o c i a l g a t h e r i n g s : W: I d o n ' t make any plans ahead. L i k e Chr i s tmas d i n n e r , you j u s t have to wa i t and see how he i s . We are s t a y i n g at home, and i f h e ' s wel l enough, w e ' l l go. As a r e s u l t , the f a m i l y ' s s o c i a l l i f e s h r i n k s , whi le i t s i s o l a t i o n grows. The ex tent of the i s o l a t i o n f e l t by the f a m i l y i s c ap tured by one woman's comment: " S o c i a l l i f e becomes a te lephone c a l l . " I t i s c l e a r tha t assuming a l i f e s t y l e compat ib le wi th COPD b r i n g s i s o l a t i o n fo r the f a m i l y group. F u r t h e r to t h i s , at tempts by the f a m i l y to m a i n t a i n a sense of normalacy i n s o c i a l i n t e r a c t i o n s c r e a t e s another s i g n i f i c a n t i s o l a t i n g f o r c e . In t r y i n g to avo id s i t u a t i o n s tha t emphasize the f a m i l y ' s d i f f e r e n c e from o t h e r s , a b a r r i e r to s o c i a l i z a t i o n d e v e l o p s , as i s i l l u s t r a t e d i n the f o l l o w i n g passage: IM: And the same t h i n g as going out to d inner i n a r e s t a u r a n t , we d o n ' t do much of tha t anymore. Because I d o n ' t get enough oxygen a p p a r e n t l y to eat a good s i z e d mea l . And i t says i n the l i t e r a t u r e 61 tha t t h e y ' v e g iven me to read t h a t I might have to eat s i x or e i g h t small meals a day. So what ' s the use of going to a r e s t a u r a n t wi th a bunch of o ther p e o p l e , and I s i t there and watch them eat? So i t s made q u i t e a d i f f e r e n c e i n our s o c i a l l i f e i n t h a t way t o o . Rather than draw a t t e n t i o n to the i l l man's d i f f e r e n c e , t h i s f a m i l y group f e e l s f o r c e d to withdraw from these s o c i a l s i t u a t i ons . The i s o l a t i o n t h a t r e s u l t s from c o n t r o l l i n g p e r c e i v e d t h r e a t s to normalacy was a l s o i l l u s t r a t e d i n some f a m i l i e s by t h e i r r e j e c t i o n of the p r a c t i c e of a sk ing o ther s to r e s p e c t t h e i r need fo r a c i g a r e t t e smoke f ree env i ronment , even though t h i s would a l low them to a t t end s o c i a l f u n c t i o n s . R a t h e r , the f a m i l i e s f u r t h e r separate themselves from other s by a v o i d i n g these o c c a s i o n s , as the f o l l o w i n g passage i l l u s t r a t e s : W: La s t year we were i n v i t e d down f o r a n i ce Chr i s tmas d i n n e r . I ' l l ask him, and he d o e s n ' t f e e l up to i t . We d o n ' t go because o ther people are going to be t h e r e . He d o e s n ' t know who i s going to be t h e r e . IM: W e l l , I mean, I d o n ' t l i k e t h i s t h i n g , we go to v i s i t f r i e n d s of o u r s , l i k e one couple i n p a r t i c u l a r , and i f anybody e l s e drops i n they make i t l oud and c l e a r to t h e i r f r i e n d s t h a t they c a n ' t smoke because I am t h e r e . And t h i s i s a l i t t l e b i t embaras s ing . R: So i t bothers you more - -IM: Yeah, not on ly they are not smoking, our f r i e n d s a r e n ' t , but they knew t h i s when they i n v i t e d us o v e r . But i f t h e i r f r i e n d s drop i n , t h e y ' v e got to t e l l them tha t they c a n ' t smoke e i t h e r . R: You f ee l l i k e you are be ing an i m p o s i t i o n , or whatever , on them? IM: Well c e r t a i n l y you a r e . The i s o l a t i n g f o r c e t h i s exer t s i s compounded by the f a c t tha t the i l l people have a shared h i s t o r y of smoking wi th those 62 they now need to ask to not smoke: " I t ' s so hard fo r me to ask them, knowing they have smoked f o r over f i f t y y e a r s . I c a n ' t ask them to s t o p . " In the age group of many of the a d u l t s who have COPD, smoking had been the " t h i n g to d o . " So most f a m i l y f r i e n d s s t i l l smoke: " A l l the people t h a t we know smoke, or at l e a s t one out of each couple d o e s . " Rather than p l ace demands on those tha t smoke, the e n t i r e f a m i l y withdraws from these s i t u a t i o n s , p e r p e t u a t i n g i t s s e p a r a t i o n from o t h e r s . The r e s u l t i n g i s o l a t i o n i s e s p e c i a l l y prominent when smokers make up a l a r g e component of the f a m i l y ' s s o c i a l group . As the p r e v i o u s passages i l l u s t r a t e , the f a m i l y ' s attempts to ma in ta in a sense of normalacy can r e s u l t i n i s o l a t i o n from i t s usual s o c i a l w o r l d . The f a m i l i e s ' accounts a l so r e v e a l e d t h a t a l a ck of under s tand ing by o ther s of what i t means to l i v e wi th COPD f o s t e r s the sense of i s o l a t i o n f o r the f a m i l y group. The f a m i l i e s c l a i m tha t most people have l i t t l e awareness of c h r o n i c lung d i s e a s e , of the d i sea se i t s e l f , or of the l i m i t a t i o n s i t poses : D: I d o n ' t t h i n k t h e r e ' s much awareness wi th most people of r e s p i r a t o r y d i s e a s e s . So, they d o n ' t know what ' s happening , and t h e y ' r e not - - I mean i f somebody goes i n w i t h , w e l l , a wa lk ing s t i c k i t ' s obvious something ' s wrong. So they are not r e a l l y , wel l I w o u l d n ' t say - - maybe t h e y ' r e not watched as much. But at l e a s t people know what i s wrong, or they have an idea what might be wrong. But when someone's j u s t s t and ing there and s t a r t s d o u b l i n g over and t r y i n g to b r e a t h e , you know, i t ' s very a l a rming fo r everybody . T h i s passage i l l u s t r a t e s the r e s u l t of the i n v i s i b l e nature of COPD's h a n d i c a p . Being l a r g e l y u n n o t i c a b l e to most p e o p l e , i t 63 does not promote o t h e r s ' awareness of the d i s e a s e . But when the s i l e n t d i s a b i l i t y suddenly emerges wi th the i l l member's acute b r e a t h l e s s n e s s , s/he j u s t as suddenly becomes the cent re of a t t e n t i o n . However, with a l a ck of under s t and ing of the symptoms, o ther s do not i n t e r p r e t the i l l member's behav iour wi th s e n s i t i v i t y . For example, the a t t e n t i o n and alarm s t i m u l a t e d when the COPD member becomes b r e a t h l e s s w h i l e i n p u b l i c only serves to i n t e n s i f y b r e a t h l e s snes s . As a r e s u l t , the f a m i l y avo ids these provok ing c i r s u m s t a n c e s , thus i s o l a t i n g i t s e l f . Even c l o s e f r i e n d s and r e l a t i v e s o f ten do not a p p r e c i a t e what l i v i n g wi th the d i sea se means fo r the f a m i l y : W: Nobody, but nobody under s t ands , i n c l u d i n g your r e l a t i v e s . T h e y ' l l say, come on , l e t ' s go h e r e , l e t ' s go t h e r e , and t h e y ' l l take him h e r e . They d o n ' t know t h a t he c a n ' t do i t . IM: D o n ' t r e a l l y . They know t h a t y o u ' r e s i c k , but they d o n ' t . They d o n ' t know the o b s t a c l e s , t h a t e v e r y t h i n g i s an o b s t a c l e . (W: They d o n ' t endure i t . ) . . . No, they are very wel l meaning, and t h e y ' l l do any th ing fo r y o u , us , but they t h i n k t h a t you are - - y o u ' v e got something l i k e a - - broken a n k l e . That the i l l member has to a c t u a l l y perform work to b r e a t h e , even when at r e s t , i s u s u a l l y not apparent to o t h e r s : IM: T h i s i s what i s hard fo r o ther people to r e a l i z e . For a long t i m e , every brea th I took was hard work. And you c a n ' t stop b r e a t h i n g or you d i e . So you are w o r k i n g , and you are l y i n g f l a t on your back and you are s t i l l working h a r d , p u l l i n g every brea th i n and pushing i t out a g a i n . The l a ck of marked v i s i b l e symptoms masks the i n t e n s i t y of the d i s a b i l i t y of COPD, c o n t r i b u t i n g to the l ack of under s t and ing 64 and the seemingly i n a p p r o p r i a t e behav iours of o t h e r s : W: They see my husband s i t t i n g i n the c h a i r , and say, 'There he i s . You are l o o k i n g g o o d . ' They j u s t - - i t ' s hard to e x p l a i n to them. I t seems l i k e you are always e x p l a i n i n g t h a t he i s not w e l l , h i s lungs are a l l s h o t . C o n s e q u e n t l y , the f a m i l y does not f ee l t h a t i t s i l l n e s s exper ience i s f u l l y u n d e r s t o o d . Ra ther , i t f e e l s as though i t endures the i l l n e s s a l o n e . T h i s l ack of under s t and ing a l s o r e s u l t s i n m i s i n t e r p r e t a t i o n s . For i n s t a n c e , when the f a m i l y does not accept i n v i t a t i o n s to j o i n i n s o c i a l a c t i v i t i e s , r a t h e r than see t h a t t h i s i s because of the second-hand smoke and energy expense, the r e f u s a l s may be viewed as a l a ck of s o c i a l i n t e r e s t : H: W e l l , t h i s f e l l o w t h a t I worked with fo r yea r s and y e a r s , he phoned up when h i s wife was g i v i n g a r e t i r e m e n t par ty . . . and he d i d n ' t r e a l i z e t h a t my wife i s , uh , has been - - had t h i s damned emphysema. And he j u s t thought I d i d n ' t want to go, and I c o u l d n ' t conv ince h im. IW: He s a i d , ' W e l l , i f you d o n ' t want to come. ' H: ' I f t h a t ' s the way you f e e l . ' But emphysema to him, i t c o u l d have been a p l ace i n (D: That d o e s n ' t mean anyth ing ) North York or somewhere. W: 'Cause he has a very good f r i e n d , and uh, h e ' s 'phoned him up three or four t imes to go to a f o o t b a l l match at t h a t b i g s t ad ium. W e l l , he c o u l d n ' t go. IM: I c o u l d n ' t go, you know. I c o u l d n ' t go the way I 've (W: But he d i d n ' t u n d e r s t a n d . ) He d i d n ' t u n d e r s t a n d . (W: - - d i d n ' t unders tand i t at a l l . ) So I have t o , you know, ' W e l l , I'm s o r r y , but ' W e l l , he d i d n ' t look s i c k y e s t e r d a y . ' Oh, t h i s i s the a t t i t u d e , but they d o n ' t , they d o n ' t u n d e r s t a n d . (W: How you look d o e s n ' t matter you see . But they c a n ' t - - they d o n ' t know.) That o ther s do not comprehend the meaning behind the f a m i l y ' s e x p l a n a t i o n s and behav iour i s c l e a r from these d e s c r i p t i o n s . Thus , i t can be seen t h a t the r e s u l t i n g communication breakdown p o t e n t i a t e s the f a m i l y ' s i s o l a t i o n . While the f a m i l i e s may r e c o g n i z e t h a t t h i s breakdown e x i s t s , t h e i r accounts r e v e a l e d tha t they t i r e of t r y i n g to b r idge t h i s gap by e x p l a i n i n g t h e i r s i t u a t i o n r e p e a t e d l y to o t h e r s : IM: I t ' s a t h i n g t h a t you - - a t h i n g you have to a c c e p t , and i t ' s a t h i n g t h a t y o u , you c a n ' t e x p l a i n to people i n a s p l i t second, you know. And I'm to the p o i n t where I d o n ' t . You know, i f they d o n ' t know, and they h a v e n ' t met me b e f o r e , I d o n ' t bother e x p l a i n i n g a n y t h i n g . I j u s t d o n ' t do i t . (R: Mhmm) And i f I - - i f I'm o f f e n d i n g them i n any way, w e l l , t h a t ' s j u s t too bad. You know. D o n ' t have any words about i t . You j u s t d o n ' t bother about i t . The accounts a l so i l l u s t r a t e d t h a t even those f a m i l i e s t h a t do t r y to e x p l a i n f i n d t h a t i t i s hard f o r o ther s to r e a l i z e the s i g n i f i c a n c e of the d i s a b i l i t y they f a c e , as r e f l e c t e d i n t h i s husband's comment: H: W e l l , and most of the t i m e , people say , 'Hey , I thought you s a i d she was s i c k . ' (D: W e l l , we know she i s , but t h i s i s someone coming i n o f f the s t r e e t or something . ) Yeah, I ' ve had those comments many, many t i m e s , e s p e c i a l l y , someone w i l l phone and ask for me. My wife answered and they say , 'She sounded g r e a t . Is she f e e l i n g b e t t e r ' ? I say , ' O h , she i s always f e e l i n g p r e t t y g o o d . ' But , you know, to a c e r t a i n ex tent i t ' s very d i f f i c u l t to t r y and t r a n s l a t e the s e v e r i t y of the impairment . They d o n ' t understand t h a t somebody can be l i k e t h a t . I t i s e s p e c i a l l y f r u s t r a t i n g fo r the f a m i l y when i t s e x p l a n a t i o n s about the i l l n e s s go unacknowledged or uncomprehended by o t h e r s . For example: 66 IW: They keep a sk ing how soon I ' l l be b e t t e r . H: S u r e , and I ' ve t o l d the same p e o p l e , ' I t ' s j u s t a c o n d i t i o n t h a t ' s not going to i m p r o v e ' , you know. Boy, they - - two months l a t e r they say , ' W e l l , your wife should be b e t t e r by now.' R: That must be f r u s t r a t i n g . H: D r i v e s me c r a z y to t e l l you the t r u t h ! I j u s t smi le and keep w a l k i n g , ' cause I d o n ' t want to get i n t o i t , you know. I t ' s not t h a t I mind t a l k i n g about i t . (D: e s p e c i a l l y when t h e y ' v e got the i n f o r m a t i o n ) . F u r t h e r m o r e , the f a m i l i e s ' comments i n t i m a t e d t h a t by not a p p r e c i a t i n g the importance of t h e i r l i m i t a t i o n s , o t h e r s f a i l to r e s p e c t the f a m i l y ' s s p e c i a l needs: W: I f they (the ne ighbours ) come to v i s i t , they d o n ' t know when to go home, t h a t he i s t i r e d . They d o n ' t understand t h a t , you know, and you t e l l them but they d o n ' t seem to r e a l i z e . They d o n ' t come around anymore. I d o n ' t mind them coming a round , but they have to r e a l i z e t h a t you are s i c k and you c a n ' t take too much. IW: They c a n ' t unders tand t h a t i f you d o n ' t smoke, i t s h o u l d n ' t bother you t h a t t h e y ' r e smoking. But t h e y ' r e p o l l u t i n g the a i r and t h a t ' s not good fo r y o u . I mean even the doc tor s say you should have a s ign i n your home t h a t s ays : 'No S m o k i n g ' . . . . We've j u s t had to stop having some of our f r i e n d s o v e r . When t h i s happens f a t i g u e and shor tnes s of brea th become the t r a d e o f f f o r s o c i a l i z i n g . Hence, i f people i n the f a m i l y ' s s o c i a l wor ld do not accommodate f o r the changed needs demanded by COPD, and the c o s t s of s o c i a l i z i n g are then seen to outweigh the b e n e f i t s , the f a m i l y withdraws from s o c i a l g a t h e r i n g s . Moreover , o ther s withdraw from the COPD f a m i l y : R: Because people d o n ' t unders tand very w e l l , does t h a t a f f e c t what you do s o c i a l l y with o ther people? 67 IM: Well y e s , because - - because what i s normal to them i s n ' t normal to y o u . And y o u ' v e got to compensate y o u r s e l f f o r t h a t . Compensate and j u s t - - you c a n ' t always go. And some w i l l under s t and , and o t h e r s d o n ' t put up with i t , you know. (W: - - l eave you a l o n e , and say , 'Oh to heck with i t . ' ) R: A f t e r w h i l e they j u s t l eave you a lone? IM: W e l l , y e a h . They d o n ' t - - d o n ' t say t h a t much, but i t shows i n t h e i r absence (R: Mmhmm. Shows i n t h e i r absence . ) - - speaks a thousand words . I n v i t a t i o n s become l e s s f requent or g r a d u a l l y s t o p : W: When he f i r s t took s i c k , some of our f r i e n d s would 'phone up and say they are going to d r i v e to W h i s t l e r , and be going up f o r the weekend and would we come. He d o e s n ' t l i k e r i d i n g i n the car anymore. He w o u l d n ' t go. . . . They thought they were doing us a k i n d n e s s . I was going to s t a r t and go wi th them, but they j u s t got t i r e d of a sk ing us . They d o n ' t ask anymore. The i s o l a t i o n the f a m i l y e x p e r i e n c e s i s o b v i o u s . Not only do the f a m i l i e s f ee l t h a t t h e i r exper ience i s not understood by f r i e n d s , r e l a t i v e s , and the p u b l i c g e n e r a l l y , but a l so they p e r c e i v e t h a t h e a l t h care workers do not u n d e r s t a n d . I t was apparent from t h e i r comments t h a t h e a l t h care workers do not communicate t h a t they r e c o g n i z e t h a t the whole f a m i l y i s a f f e c t e d by COPD, and need i n f o r m a t i o n and support as a group: H: With her medical d o c t o r , they seem to t h i n k tha t the d i sea se only i n v o l v e s her because i t i n v o l v e s her p h y s i c a l l y . (R: Mhmm) OK? And t h a t ' s where i t ends . Who knows, the r e s t of us are j u s t s c rambl ing a round . D: But I t h i n k any th ing t h a t I have, any knowledge t h a t I have i s - - I ' ve gained i t m y s e l f , or f rom, you know (H: yeah) second hand i n f o r m a t i o n from you ( the i l l member). 68 H: She ' s got a l l these s p e c i a l i s t s , whether they know what the h e l l they are d o i n g , I have no i d e a . But you know, not one of them has ever approached me and s a i d , ' W e l l , M r . - - I r e a l i z e tha t you are having these problems , okay, w i t h i n your f a m i l y . (D: I t ' s , 'Oh h i . How do you d o . ' ) The s u p e r f i c i a l c o n t a c t and l a ck of a d d r e s s i n g or even acknowledging the f a m i l y ' s needs are obvious i n these passages , as i s the anger f e l t by the f a m i l y . I s o l a t i o n of the f a m i l y group i s thus p o t e n t i a t e d by these i n t e r a c t i o n s wi th h e a l t h care w o r k e r s . For when the needs of the f a m i l y are i g n o r e d , the f a m i l y copes with the e f f e c t s of COPD a l o n e . As d e s c r i b e d , numerous f o r c e s promote the i s o l a t i o n of the f a m i l y group: the r e s t r i c t i o n s necessary to l i v e wi th COPD, the attempts to m a i n t a i n a sense of normalacy i n s o c i a l i n t e r a c t i o n s , and the p e r v a s i v e l ack of under s t and ing by o ther s of what i t means to l i v e with COPD. Not only does the f a m i l y as a group exper i ence i s o l a t i o n , i s o l a t i n g f o r c e s a l so ac t upon the i n d i v i d u a l f a m i l y members. B. I s o l a t i o n of I n d i v i d u a l Members w i t h i n the Fami ly The f a m i l i e s ' accounts i n d i c a t e d t h a t three pr imary i s o l a t i n g f o r c e s ac t upon the i n d i v i d u a l s w i t h i n the COPD f a m i l y : the gap between the needs of the COPD member and those of the wel l members, the r e s t r i c t e d e x p r e s s i o n of emotion w i t h i n the f a m i l y , and the l ack of mutual under s t and ing between f a m i l y members. The f o l l o w i n g e x p l o r e s the meaning of each of these f o r c e s . 69 As the COPD members become more i l l , they are l e s s able to t o l e r a t e i r r i t a n t s to b r e a t h i n g , t h e i r energy r e se rve s d e c l i n e , t h e i r a b i l i t i e s to f u l f i l l f a m i l y r o l e s d i m i n i s h , and t h e i r l i v e s become more f r a g i l e . The gap tha t emerges between the i l l member's needs and c a p a b i l i t i e s and those c h a r a c t e r i s t i c of f a m i l y l i f e can separate the members from one a n o t h e r . T h i s was emphasized i n d e s c r i p t i o n s of t r a d i t i o n a l l y f a m i l y - f o c u s e d o c c a s io ns t h a t c o u l d no longer be c e l e b r a t e d as a group: W: Our daughter got marr i ed l a s t September and he c o u l d n ' t go to the r e c e p t i o n . . . . R: That must have been hard f o r both of y o u . IH: I d i d n ' t have the energy anyway. I made i t to the church and got down the a i s l e . And then s t and ing o u t s i d e the c h u r c h , where the t h i n g s o r t of breaks up, i t was a l l I c o u l d do j u s t to s tand f o r t h a t l e n g t h of t i m e . IW: La s t C h r i s t m a s , I c o u l d n ' t go because of the dry c o l d . I c o u l d n ' t even breathe i n t h a t d r y , c o l d weather . (R: Mmhmm). I ' ve got to have m o i s t u r e . So anyway, we ' re t r y i n g to f i g u r e out how I'm going to get from here to there and we f i g u r e d you c o u l d n ' t do i t . So, I j u s t s tayed home. I phoned up (my daughter) and s a i d , ' S o r r y , we j u s t c a n ' t come down. ' The g r e a t e r the l i m i t a t i o n of the COPD member, the more d i f f i c u l t i t becomes to be i n c l u d e d i n a c t i v i t i e s d e s i r e d by the wel l members: H: Under normal c o n d i t i o n s of l i v i n g , i t ' s v e r y , very d i f f i c u l t to i n v o l v e her i n t h i n g s we do. And so we have to stop and rede s i gn our own p l a n s , and at the same time - -IW: You never d i d , you j u s t l eave me at home. The d i v i s i v e fo rce t h i s c r e a t e s w i t h i n the f a m i l y i s o b v i o u s . The f a m i l y i s faced wi th the c h o i c e of the wel l members 70 engaging i n a c t i v i t i e s on t h e i r own or wi thdrawing from these a c t i v i t e s c o m p l e t e l y , thus narrowing the focus of t h e i r a c t i v i t i e s w i t h i n the parameters of the i l l member's c a p a b i l i t i e s . I t i s apparent tha t f r u s t r a t i o n can emerge from the s a c r i f i c e s made to accommodate the i l l member: W: You c a n ' t go to any g a t h e r i n g s . We went to a wedding r e c e p t i o n a w h i l e ago. My husband got embarassed because the hos tes s was shooing everybody from every room tha t smoked, and what n o t . He wanted to come home. As f a r as I was c o n c e r n e d , i t wasn ' t worth the e f f o r t to get dressed to go o u t . E i t h e r o p t i o n s e l e c t e d by the f a m i l i e s c a r r i e s with i t a dimension of i s o l a t i o n . I f the d e s i r e d a c t i v i t i e s are abandoned, the f a m i l y group becomes more i s o l a t e d , and f e e l i n g s of f r u s t r a t i o n and of be ing d e p r i v e d are f o s t e r e d i n the wel l members. On the o ther hand, i f each member pursues those a c t i v i t i e s tha t are w i t h i n h i s / h e r c a p a b i l i t i e s , i t f o s t e r s g u i l t f e e l i n g s in the wel l members and f e e l i n g s of be ing abandoned i n the i l l member, and thus i s o l a t e s the members from each o t h e r . Fur thermore , f a m i l y members can be wedged apar t as the f a m i l y t r i e s to comply with the i l l member's d i s e a s e - r e l a t e d needs as wel l as meet the needs and d e s i r e s of the o ther members. T h i s can c r e a t e a gap between members, as was g r a p h i c a l l y demonstrated i n t h i s f a m i l y where the wi fe c o n t i n u e s to smoke: IM: And the b i g g e s t problem from day to day i s t h a t my wife spends a l o t of her time i n the k i t c h e n , and I spend my time i n h e r e . I t h i n k of something I want to say to her and by the time she comes back 20 minutes l a t e r , I ' ve f o r g o t t e n what i t i s . So there i s q u i t e a d i f f e r e n c e i n home l i f e t h a t way. 71 W: When we were going to Hawaii I go i n the smoking s e c t i o n and he goes i n the non-smoking. . . . R: So i t ' s a lmost meant a s e p a r a t i o n , you know, a r ea l p h y s i c a l s e p a r a t i o n ? IM: Yeah, when y o u ' v e both been accustomed to smoking fo r tha t l o n g , then a l l of a sudden y o u ' v e got a - - the c i g a r e t t e t h i n g comes up, and one of you q u i t s and the o ther d o e s n ' t , i t ' s bound to make a tremendous d i f f e r e n c e , a s e p a r a t i o n between y o u . T r y i n g to accommodate c o n f l i c t i n g member's d e s i r e s and needs f u e l s the s e p a r a t i o n of changing long e s t a b l i s h e d h a b i t s and p a t t e r n s of time t o g e t h e r . C o n t r o l of the e x p r e s s i o n of emotion w i t h i n the f a m i l y exer t s another s e p a r a t i n g f o r c e between members. Al though t h i s c o n t r o l i s used to p r o t e c t the i l l member from emot ion- induced b r e a t h l e s s n e s s , i t can impede communication between f a m i l y members, and i s o l a t e one from the o t h e r . The s e p a r a t i o n tha t r e s u l t s between members was r e f l e c t e d , f o r example, as the f a m i l i e s d e s c r i b e d t h a t the i l l members may be exc luded from f a m i l y d i s c u s s i o n s : D: She ' s not i n c l u d e d i n our l i t t l e d i s c u s s i o n s and t h i n g s , because we d o n ' t want her to know tha t we are a l l upset and w o r r i e d . Because then s h e ' l l get a l l upset and w o r r i e d . And members may not share t h e i r f e e l i n g s or thoughts as openly w i t h i n the f a m i l y : D: W e l l , you j u s t d o n ' t get e x c i t e d about the same t h i ngs . H: We d o n ' t argue or f i g h t . S: Over look t h i n g s , t h a t ' s a l l . And t h a t ' s the t r u t h . 72 You have to - - no c h o i c e . D: But I vowed I ' d never , I mean I used to babble i n f r o n t of h e r , but now I d o n ' t anymore. I go home and as soon as I h i t the c a r , I c a n ' t see when I'm d r i v i n g , a l l s o r t s of t h i n g s , but I won' t do i t i n f r o n t of h e r . She can probably s t i l l t e l l i f I'm upse t , but at l e a s t i t ' s not obvious t h a t I'm j u s t about devas ta ted or something . I t i s c l e a r t h a t i n keeping emotions to themselves and not s h a r i n g t h e i r thoughts and f e e l i n g s , i n d i v i d u a l members cope alone with the p a i n f u l a spect s of l i f e wi th COPD. Al though an e f f e c t i v e s t r a t e g y f o r a v o i d i n g b r e a t h l e s s n e s s , the m o n i t o r i n g of emot ion- laden communication wedges apar t the members and may not a l low them to draw upon the s t r e n g t h of t h e i r c o l l e c t i v e a b i l i t i e s to cope . The avoidance of emotional i s s u e s w i t h i n the group was f u r t h e r i l l u s t r a t e d by the f a c t tha t almost a l l f a m i l y u n i t s had before the r e sea rch i n t e r v i e w never d i s c u s s e d the impact of the i l l n e s s on t h e i r l i v e s . Moreover , the b e n e f i t of l e s s r e s t r i c t e d communication w i t h i n the COPD f a m i l y was i n d i c a t e d as the p a r t i c i p a n t f a m i l i e s commented t h a t they had enjoyed and l e a r n e d from the s h a r i n g t h a t o c c u r r e d d u r i n g the i n t e r v i e w p r o c e s s . The f a m i l i e s ' d e s c r i p t i o n s a l s o i n d i c a t e d t h a t the s e p a r a t i n g fo rce s between members grow when a shared under s t and ing of the i l l member's needs and l i m i t a t i o n s i s not ach ieved w i t h i n the f a m i l y , f o r mutua l ly s a t i s f y i n g e x p e c t a t i o n s are then not d e v e l o p e d . The f o l l o w i n g passage i l l u s t r a t e s the s t r a i n on r e l a t i o n s h i p s t h i s c r e a t e s : 73 H: Okay, now I ' l l accept i t . Now I ' l l accept you as whatever you are or whatever you a r e , so t h a t , I - - I c o u l d have some k i n d of r e l a t i o n s h i p with her w i t h o u t , always - - not be ing too sure what ground y o u ' r e s t and ing on . I f you say something which she may not l i k e i t - - l i k e she o f ten says , ' W e l l , maybe I'm not able to do t h a t . ' But then I d o n ' t know whether , she ' s not able to do i t , or because she d o e s n ' t want to do i t . The a l r eady d i f f i c u l t process of r e d e f i n i n g f a m i l y r e l a t i o n s h i p s becomes even more s t r a i n e d when the members do not have a mutual ba s i s of under s t and ing of the l i m i t a t i o n s imposed on the i l l member by COPD. By not a p p r e c i a t i n g the i l l member's reduced c a p a b i l i t i e s due to the changes from COPD, the same mi sunder s t and ing of behaviour e x h i b i t e d by those o u t s i d e the f a m i l y can occur w i t h i n the f a m i l y , thus f u r t h e r i s o l a t i n g the members from each o t h e r . In such s i t u a t i o n s , the i l l members e s s e n t i a l l y must j u s t i f y to t h e i r own k i n the v a l i d i t y of t h e i r symptoms, as i s conveyed i n the f o l l o w i n g passage: H: I t h i n k a l o t of i t i s a g a i n , p s y c h o l o g i c a l . She t h i n k s she i s going to run i n t o problems, so she does . We s t a r t wa lk ing and a l l of a sudden she gets t h i s - - a l l hyped up, you know. We have to s i t down. IW: Yet I d o n ' t t h i n k - - When he s ays , ' p s y c h o l o g i c a l l y she ' s going to run i n t o t r o u b l e , ' i t i s n ' t t h a t I t h i n k I'm going to - - i t ' s t h a t I know I'm going t o . As these q u o t a t i o n s convey , the f a m i l y members were ab le to openly express two d i f f e r e n t v i e w p o i n t s w i t h i n the f a m i l y i n t e r v i e w , v i ewpo in t s t h a t r e f l e c t the gap between the members. When a mutual under s t and ing i s not ach ieved w i t h i n the f a m i l y , members cannot f u l l y a p p r e c i a t e what the i l l n e s s means for the o t h e r . T h i s was r e f l e c t e d by the incongruent 74 p e r s p e c t i v e s expressed by members i n some f a m i l i e s . For example, the e f f e c t of COPD was seen from one husband's v i e w p o i n t as , " a c t u a l l y , o u t s i d e of p h y s i c a l t h i n g s , i t h a s n ' t r e a l l y changed a great d e a l , " y e t from the i l l woman's p e r s p e c t i v e , " a l l of a sudden my whole l i f e had changed. I found i t f r u s t r a t i n g , very f r u s t r a t i n g . S t i l l d o . " For one, the i l l n e s s i s a minor i n c o n v e n i e n c e , f o r the o t h e r , a d r a s t i c l i f e change. By c o n t r a s t , i n f a m i l i e s where a shared under s t and ing has been a c h i e v e d , an acceptance of the i l l member's changes and c l e a r e x p e c t a t i o n s of one another are p r o j e c t e d : IM: She understands i t b e t t e r than me. S h e ' l l t e l l me tha t you b e t t e r not go wi th t h a t , whereas I might have gone and done i t . You know, she ' s got b e t t e r judgement fo r i t than I have. Rather than a gap tha t i s o l a t e s i n d i v i d u a l members, the shared under s tand ing c r e a t e s a u n i f y i n g f o r c e . C l e a r l y , the degree of under s tand ing the f a m i l y ach ieves s i g n i f i c a n t l y a f f e c t s the i n t e n s i t y of the i s o l a t i o n e x p e r i e n c e d f o r i n d i v i d u a l s w i t h i n the f a m i l y . In s h o r t , the f a m i l y wi th COPD e x p e r i e n c e s d i v i s i v e f o r c e s that i s o l a t e members from each o t h e r , namely, the d i f f e r e n c e between the a b i l i t i e s and d e s i r e s of the i l l and wel l f a m i l y members, the c o n t r o l of emotional e x p r e s s i o n , and the l ack of a shared under s t and ing ach ieved w i t h i n the f a m i l y . Al though the f a m i l i e s ' accounts p r o j e c t e d v a r y i n g degrees of i s o l a t i o n , for the group and/or the i n d i v i d u a l members, none escaped the e x p e r i e n c e . A sense of i s o l a t i o n was common across 75 a l l a c c o u n t s : i s o l a t i o n i s synonymous with COPD. The d i s e a s e - d i c t a t e d l i f e s t y l e assumed by the f a m i l y with COPD has been d e s c r i b e d , f o l l o w e d by a d e s c r i p t i o n of the i s o l a t i o n t h a t accompanies the i l l n e s s e x p e r i e n c e . The t h i r d s e c t i o n of t h i s chapter e n r i c h e s the account by d e s c r i b i n g the f a m i l y work necessary to l i v e wi th COPD. Fami ly Work The f a m i l i e s ' d e s c r i p t i o n s r e v e a l e d the nature and meaning of the " f a m i l y work" r e q u i r e d to l i v e wi th COPD, t h a t i s , the c h a l l e n g e s tha t the i l l n e s s poses f o r the f a m i l y and the cop ing s t r a t e g i e s they use to deal with t h e s e . The r e s e a r c h e r i d e n t i f i e d four of these pr imary c h a l l e n g e s : A) a c c e p t i n g the c h r o n i c nature of COPD, B) f a c i n g an u n c e r t a i n f u t u r e , C) m a i n t a i n i n g a s a t i s f y i n g shared f a m i l y l i f e , and D) managing the i l l n e s s . The f o l l o w i n g s e c t i o n o u t l i n e s the d e s c r i p t i o n s of each of t h e s e , and the types of cop ing s t r a t e g i e s the f a m i l i e s used to deal wi th the c h a l l e n g e s . A . A c c e p t i n g the C h r o n i c Nature of COPD From the f a m i l i e s ' a c c o u n t s , i t i s c l e a r t h a t l i v i n g with COPD i n v o l v e s coming to terms wi th the r e a l i t i e s of l i f e with a c h r o n i c i l l n e s s . Working through the l o s s e s the i l l n e s s b r i n g s , a c c e p t i n g t h e s e , and f i n d i n g a way to c o n t i n u e on with t h i s new r e a l i t y were a l l found to be par t s of t h i s c h a l l e n g e fo r the COPD f a m i l y . 76 That p e r v a s i v e l o s s e s are exper i enced was apparent i n the f a m i l i e s ' d e s c r i p t i o n s . The group has l o s t i t s p r e v i o u s l y hea l thy member and i t s former way of l i f e , as these passages i11u s t r a t e : w: As f a r as our l i f e i s c o n c e r n e d , i t has changed d r a s t i c a l l y . I w o u l d n ' t say fo r the b e t t e r . H: I t h i n k e s s e n t i a l l y , d e f i n i t e l y , the s o c i a l and a l l o ther a spects of l i f e have changed because of the i l l n e s s . I mean, she ' s not the same person she used to be , d e f i n i t e l y . For her a t a x i n g day would be to get up i n the morning and have a b a t h . (R: Mhmm) And tha t would be t a x i n g . And t h a t ' s d e f i n i t e l y not the p e r s o n a l i t y she used to be. The d e s c r i p t i o n s of the l o s s of va lued aspects of f a m i l y l i f e exempl i fy the g r i e f the f a m i l y exper i ence s i n the process of a c c e p t i n g the c h r o n i c i t y of COPD: W: We used to love to go out and p r o s p e c t . That was -our b i g t h i n g . I t was g r e a t . . . . The past summer we d i d n ' t go any p l a c e . The summer before t h a t , we were gone three months p r o s p e c t i n g . But we can see the change from two year s ago when p r o s p e c t i n g . He was doing a l i t t l e b i t , not l a s t summer but the summer before t h a t . Then he d i d n ' t do n o t h i n g . He j u s t b a r e l y sat on a s t o o l , and b a r e l y made i t to the c a r . But i t was a change, and i t was so n i c e up t h e r e , and the time went by so f a s t . H: We used to a l o t of t h i n g s t o g e t h e r . . . . We d i d a l o t of p h y s i c a l , nature type t h i n g s , spent time at the c o t t a g e . (D: canoeing) And d o i n g , you know, j u s t even w a l k i n g . (IW: h i k i n g ) We h i k e d , r i g h t . I mean l i t e r a l l y h iked more than ten f ee t at the same t i me. W: We had our own boa t . We'd t i e i t up down there (at the moor) , people with t h e i r b o a t s . But the ramp i s too steep f o r him now. . . . He c a n ' t manage the 77 boa t . . . . Anyway, we miss i t . Not only must the f a m i l y accept the l o s s e s t h a t COPD b r i n g s , they must a l so accept t h a t the demands of the i l l n e s s tha t enforce these changes are permanent. L i f e i s changed: IM: I t ' s what you c a l l a - - a s courge . (W: You 've got to l i v e wi th i t you know.) And you know you can a l l e v i a t e i t a b i t , but you know t h a t i t ' s never going to a c t u a l l y c l e a r up. I t was c l e a r t h a t the acceptance of the c h r o n i c nature of COPD i s a process tha t takes p lace over t i m e , as i s conveyed i n the f o l l o w i n g passages : H: I d o n ' t t h i n k we were even be ing honest with o u r s e l v e s at t h a t t i m e . (IW: No, I d o n ' t t h i n k we were . ) . . . D: Thought you c o u l d do more than you c o u l d do. . . . S: 'Cause I remember even when going down f o r Chinese food wi th you a couple of t i m e s , you d i d n ' t enjoy y o u r s e l f at a l l , because you were so out of b r e a t h . You d i d n ' t enjoy your d i n n e r , and you c o u l d see i t . R: But you were s t i l l g o i n g , and t r y i n g to do - -(IW & H: Oh, y e s . ) T h i n k i n g t h a t , ' I f I on ly t r i e d h a r d e r ' ? IW: Yeah, I would get more energy . D: We thought tha t i t would e v e n t u a l l y go away. H: I t took me months and months to even get w i s e . She would be p l a y i n g games with me, and I - - The f i r s t t h i n g I knew I was doing most of the housework. But I d i d n ' t know why. (D: Yeah) Yeah ( l augh ing ) But , you know - - (D2: W e l l , i t ' s a r e a l l y hard t h i n g to f a c e . ) You j u s t put a l i t t l e b i t more e f f o r t f o r t h . I t takes time to face the f a c t t h a t the i l l member i s d i f f e r e n t , and as a r e s u l t , so i s the l i f e of the e n t i r e f a m i l y . Each f a m i l y develops ways to cope wi th t h i s r e a l i t y . One p r e v a l e n t s t r a t e g y d e s c r i b e d by the f a m i l i e s i s to assume a p o s i t i v e out look or a t t i t u d e toward the i l l n e s s . The f a m i l i e s i l l u s t r a t e d v a r i o u s ways t h a t they m a i n t a i n a p o s i t i v e o u t l o o k . For example, p o s i t i v e h e a l t h - r e l a t e d i n f o r m a t i o n i s emphasized: "They t o l d him he was no worse . No b e t t e r , but no worse . W e l l , t h a t ' s s o m e t h i n g . " Sometimes l o c a t i n g something p o s i t i v e i s accompl i shed by comparing t h e i r s i t u a t i o n to something seen to be worse : " I 'm s t i l l thankfu l to the ex tent tha t she ' s ambulatory as much as she i s . I t c o u l d be a l o t w o r s e . " "He went on the bus and came back on the bus . See, some people c a n ' t do t h a t . So I t h i n k to m y s e l f , ' W e l l , i t ' s - - there are a l o t of o ther people w o r s e . ' " Recogn iz ing t h a t r e l a t i o n s h i p s have grown c l o s e r through the i l l n e s s exper i ence p r o v i d e s some f a m i l i e s a p o s i t i v e f o c u s : H: I t h i n k maybe i t ' s made me take a long look at what I 've got and be a l i t t l e more a p p r e c i a t i v e . Should have been more i n the p a s t . And I t h i n k now, y e a h , you do c o n s i d e r more than you d i d i n the p a s t . IM: Oh, I d o n ' t know how she puts up with i t . You know, sometimes I t h i n k to m y s e l f , r ever se the p o s i t i o n , l i k e , and I w o u l d n ' t be able to - - to do the same. I w o u l d n ' t be a b l e , not because , I say, not because I w o u l d n ' t want t o , but I w o u l d n ' t be able to do the way she ' s been able t o . R: So through t h i s y o u ' v e r e a l l y come to a p p r e c i a t e - - ? IM: Oh y e s . (W: Oh, yeah) Yeah, more so than you know. Desp i te extreme l i m i t a t i o n s something p o s i t i v e can be found: IM: A c t u a l l y , I t h i n k i t ' s taught me - - They say i t ' s an i l l wind t h a t blows nobody any good. You l e a r n t h i n g s t h a t you w e r e n ' t i n t e r e s t e d i n b e f o r e . You 7 9 know, t h i n g s t h a t y o u , you never knew were e x i s t i n g . Another s t r a t e g y i s to p e r c e i v e the i l l n e s s as o u t s i d e the f a m i l y ' s c o n t r o l , as i l l u s t r a t e d i n the f o l l o w i n g passage: W: I used to go the the doc tor a l o t , and I know what i s coming and I know how to handle i t more now. I had to t a l k to somebody. But now I j u s t say , 'Pu t i t out of your head. Take deep b r e a t h e s . ' I t a l k to m y s e l f . I go to bed i f I have t o . You take deep b r e a t h s . That i s the only way push i t out of your head. You c a n ' t be worry ing about something tha t y o u ' r e not i n c o n t r o l o f . Viewing aspects of the i l l n e s s as beyond i n f l u e n c e enables the f a m i l y to avo id f o c u s i n g and d w e l l i n g on the i l l n e s s . But , r e g a r d l e s s of the s t r a t e g i e s each f a m i l y d e v e l o p s , a l l face the c h a l l e n g e of a c c e p t i n g the r e a l i t y t h a t COPD i s now an ever present pa r t of a d i f f e r e n t way of f a m i l y l i f e . Al though the f a m i l i e s d e s c r i b e d the d i f f i c u l t y of a c c e p t i n g the c h r o n i c nature of COPD, the same degree of d i f f i c u l t y was not apparent i n a c c e p t i n g the occurrence of the lung d i sea se i t s e l f . T h i s happens r e a d i l y , and appears to be l i n k e d to the f a c t t h a t i n most f a m i l i e s the development of the d i sease i s not a s u r p r i s e . To them the cause i s o b v i o u s : a l i f e - t i m e of smoking: IW: Now I say, I ' ve s a i d i t many, many t i m e s , I know why I'm an i n v a l i d , because I smoked too much. But , I f ee l s o r r y fo r the people who have emphysema that never smoked. (D: T h a t ' s r i g h t ) I always f e e l - -W e l l , how do they f e e l about t h i s ? I would be so angry , I r e a l l y would . IM: I mean I 've known a l l my l i f e t h a t smoking was bad fo r me. U n f o r t u n a t e l y , I worked at a job which I th ink encouraged my smoking . . . a very b o r i n g t ed ious j o b . So you smoke, one c i g a r e t t e a f t e r the o t h e r . 80 W: But you know to t h i n k we used to have our boat and go down there and p lay cards and everybody i n the p lace smoked. No wonder y o u ' d get up i n the morning and be shor t of b r e a t h . IM: Oh y e s , i t ' s been an atmosphere of smoke fo r 40 or 50 y e a r s . Rather than focus on ' w h y , ' the s i g n i f i c a n t component of f ami ly work i n v o l v e s 'how, ' t h a t i s , a c c e p t i n g what the nature of the c h r o n i c i l l n e s s means f o r the f a m i l y and f i n d i n g a way to l i v e with t h i s r e a l i t y . B. F a c i n g an U n c e r t a i n Future The f a m i l y must not only f i n d ways to face the r e a l i t y of present l i f e wi th COPD, i t must a l so f i n d ways to cope wi th an u n c e r t a i n f u t u r e . One f a c t o r t h a t makes t h i s d i f f i c u l t i s the knowledge t h a t the i l l member may become i n c r e a s i n g l y l i m i t e d as the d i sea se p r o g r e s s e s : IW: I dread the day when I'm going to be i n bed and not g e t t i n g o u t . See I'm not p l a n n i n g on d y i n g , t h a t might be e a s i e r , r i g h t ? . . . But you know, I - -t h a t ' s a p a r t t h a t r e a l l y w o r r i e s me. D: She d o e s n ' t want to be t o t a l l y dependent on anybody on a n y t h i n g . She ' s always been f a r too o v e r l y i ndependent. R: That must be s t range fo r everybody i n the f a m i l y to t h i n k about . L i k e , what about tomorrow, what about - - ? H: I was l o o k i n g at t h i s program and i t was t a l k i n g about t h i s husband l o o k i n g a f t e r h i s wi fe and, f o r four yea r s day and n i g h t , and e v e r y t h i n g e l s e . W e l l , t h a t ' s n i c e , but where do you get the money to do these t h i n g s ? I mean, we c o u l d n ' t a f f o r d i t , i f - -i f i t came down to t h a t . . . . I f I d i d n ' t have a job I c o u l d n ' t even support you at home, nor c o u l d I support you anywhere e l s e . . . . So t h e r e f o r e , y o u ' r e i n a r e a l di lemma. . . . I d o n ' t t h i n k about i t . I would sooner t h i n k , 'No , she won' t get i n t o 81 tha t i n v a l i d s t a g e . ' I suppose i n many ways I'm denying i t . (D: s h e ' s s i c k ) The f a c t t h a t she i s s i c k , r i g h t . In s ay ing to m y s e l f , i t ' s not going to happen. Because much of f a m i l y l i f e i s d i c t a t e d by the h e a l t h s t a tus of the i l l member, e n v i s i o n i n g an even more l i m i t e d l i f e s t y l e i s an immensely d i f f i c u l t fu ture to f a c e . In f a m i l i e s where the i l l member had p r e v i o u s l y been extremely s i c k , they had seen what the fu ture c o u l d h o l d . One f a m i l y ' s comments i l l u s t r a t e the t e n s i o n c r e a t e d w i t h i n the f a m i l y by the f ea r of the i l l n e s s p r o g r e s s i n g and the a n t i c i p a t i o n of the impact upon the fami 1y : W: I j u s t t e l l him t h a t I w i l l not go through what I went through before (when he was very s i c k at home). I am not going to stay home and look a f t e r him. He can go to the h o s p i t a l . (IM: Yes you a r e , Honey, you a r e . ) No, I w o n ' t . You c a n ' t go anywhere. R: From what you s a i d l a s t time we t a l k e d , I know how hard i t was f o r both of you and knowing t h a t t h a t had happened b e f o r e , and never wanting to go through tha t agai n . W: You d o n ' t see anybody. You c a n ' t have anybody see y o u . No assurance t h e r e ' s going to be an end to i t . (IM: W e l l , i t never w i l l go away c o m p l e t e l y . ) I know, but at l e a s t i f y o u ' r e b e t t e r you can have f r i e n d s i n . I t i s r e c o g n i z e d t h a t the i l l member's l i m i t a t i o n s w i l l become l i m i t a t i o n s of the e n t i r e f a m i l y . Knowing t h i s f a t e , these l i m i t a t i o n s seem u n b e a r a b l e . Another f a c t o r t h a t makes f a c i n g the fu ture a c h a l l e n g e i s tha t the fu ture c o u l d c o n c e i v a b l y be one wi thout the i l l member. I t i s e v i d e n t t h a t the f a m i l y must c o n s t a n t l y prepare i t s e l f f o r i t s COPD member's d e a t h , as i l l u s t r a t e d i n these passages : 82 D2: Well see , I l i v e d overseas f o r y e a r s , and would come home every summer and I would see more of a change than p o s s i b l y people who were here a l l the t i m e . And there were times I got on t h a t plane not knowing - -(H: when you were l e a v i n g - - IW: i f I ' d be here when you came b a c k . ) Many t i m e s . . . . (H: Our p a r t i n g s were always e m o t i o n a l . ) S: P e r s o n a l l y , I guess , I mean - - I know Mom never needed me f o r a n y t h i n g . She always seemed to cope and get a long q u i t e w e l l . But I know t h a t I needed her a l o t , and she ' s always been there when I 've been in t r o u b l e or wherever I ' ve been. She ' s always g iven me adv ice and he lped me o u t . And I t h i n k t h a t ' s probably where I'm going to miss her the most i s - -I'm not going to know where to tu rn t o . The p r e p a r a t i o n fo r i n e v i t a b l e d e t e r i o r a t i o n and death i s at once unavo idab le and p a i n f u l . Coping with the u n c e r t a i n t y of the fu ture i s impeded, however, when the f a m i l y ' s knowledge of how the i l l n e s s exper ience w i l l proceed i s l i m i t e d : H: I suppose i f we had any b r a i n s we would p l a n , but then what do you p l a n , ' c a u s e , you know, l i k e I say, we d o n ' t even know what i t i s we ' re up a g a i n s t , ( s i gh ) What to look forward t o . The f a m i l i e s e x p l a i n e d t h a t l i t t l e i n f o r m a t i o n to help them prepare f o r t h e i r fu ture i s shared by h e a l t h care worker s . In f a c t , the s u b j e c t of the fu ture with COPD i s o f ten not even broached . The f o l l o w i n g comments r e f l e c t the d e s i r e of the f a m i l y to address t h i s need, and the c o n s t r a s t i n g l a c k of a t t e n t i o n f e l t by the f a m i l i e s to be g iven to t h i s by h e a l t h care worker s : H: I mean t h i s i s n o t , as f a r as we under s t and , i t ' s j u s t not going to get a h e l l of a l o t b e t t e r . But i f you mind your p ' s and q ' s , i t won' t get a heck of a l o t worse , you know. And t h e r e ' s an awful l o t to 83 minding your p ' s and q ' s . I d o n ' t know what makes i t b e t t e r or what makes i t worse , smoking of c o u r s e . But what ' s the r e c o r d on p a t i e n t s wi th (IW: S u r v i v a l r a t e , you mean?) lung d i sease? I mean, I d o n ' t know a n y t h i n g . The doc tor d o e s n ' t seem to want to t e l l us a n y t h i n g . Maybe, p r o b a b l y , they d o n ' t know. Not on ly i s the f a m i l y unsure of fu ture p o s s i b i l i t i e s , i t does not express c o n f i d e n c e i n i t s knowledge of what behav iour s to use to t r y and shape t h i s f u t u r e . Some f a m i l i e s used r e s o u r c e f u l i n f o r m a t i o n - s e e k i n g s t r a t e g i e s , such as t a l k i n g to o ther p a t i e n t s i n the d o c t o r ' s w a i t i n g room. But most f a m i l i e s do not p e r s o n a l l y know other people wi th COPD, so t h e i r o p p o r t u n i t i e s to l e a r n from the exper i ences of o ther s are m i n i m a l . However, f a m i l i e s d i d i n d i c a t e t h a t t a l k i n g wi th o ther s going through s i m i l a r exper i ences would help them prepare fo r the fu ture as we l l as to cope wi th today : H: T h a t ' d be e x c e l l e n t , I t h i n k , i f you a l l go t , you know, people wi th any exper ience wi th i t . I f they would be w i l l i n g to s i t down and say, as a group or whatever even over a beer , who c a r e s . S i t down. Okay, these are the t h i n g s t h a t happened to my w i f e . (D: as time goes on) And I found her doing these t h i n g s , and so - -IW: Yeah, but how about i f you t a l k e d to the person t h a t i t ' s going to happen t o . D: You d o n ' t know e i t h e r . (H: You can be t h e r e . ) . . . In a d d i t i o n to seeking i n f o r m a t i o n , each f a m i l y develops o ther s t r a t e g i e s to cope wi th the u n c e r t a i n t y of i t s f u t u r e . F a m i l i e s , r e a l i z i n g t h a t the next acute i l l n e s s c o u l d be the l a s t , adopt the approach of l i v i n g f o r today : " E s p e c i a l l y a f t e r a couple of c r i s e s , you tend to - - you j u s t say to y o u r s e l f , ' W e l l , you j u s t take the time you have l e f t and, you 84 know, make i t as good as you c a n . ' " Others view t h a t they are not i n c o n t r o l of t h e i r d e s t i n y . In t h i s way they t r y to f u n c t i o n to the maximum t h a t t h e i r pre sent a b i l i t i e s a l l o w , r a t h e r than be c o n s t r a i n e d by the f ea r of p o s s i b l e d i s a s t e r , as the f o l l o w i n g comments i l l u s t r a t e : IM: I wanted to go back of Edmonton t h i s year so bad and look a round . I ' ve got to go back. . . . W: I f you want to go back so bad, we w i l l go. You might d ie halfway up t h e r e . That i s the chance you have to t a k e . L i k e i f you want to go to (another town) . In f a c t , the l a s t time we went up there I s a i d to the people up t h e r e , ' I f he d ie s h e r e , he d ie s h e r e . But i f he wants to come we're c o m i n g ! ' W: I f h e ' s going to have one of those a t t a c k s on the bus , h e ' l l have i t . And i f he ' s going to have one h e ' l l have i t here t o o . So we go. M a i n t a i n i n g hope was one s t r a t e g y common to a l l f a m i l i e s . Some hope fo r improvement: IW: Of course we l o s t a l l of t h i s s p r i n g and summer wi th me be ing so s i c k , but by next s p r i n g and summer I hope to get out more, and a l o t more. W: W e l l , I d o n ' t know, i f he keeps improving I might get him to church one of these days . Others hope t h a t the i l l n e s s w i l l not p r o g r e s s : H: We - - we l i v e wi th i t from day to day, and m i r a c u l o u s l y , I suppose, we t h i n k t h a t i f i t d o e s n ' t get any b e t t e r , i t s h o u l d n ' t get any worse , you know. What e l s e can you say? . . . L i k e I say, j u s t hope i t d o e s n ' t get any worse . But i n each f a m i l y , hope i s an impor tant cop ing s t r a t e g y toward meeting the c h a l l e n g e of f a c i n g an u n c e r t a i n f u t u r e . Another c h a l l e n g e the COPD f a m i l y faces i s to f i n d a way to m a i n t a i n a s a t i s f y i n g shared f a m i l y l i f e w i t h i n the r e s t r i c t i o n s imposed by the i l l n e s s . C. M a i n t a i n i n g a S a t i s f y i n g Shared Fami ly L i f e A c c e p t i n g t h a t COPD has changed f a m i l y l i f e , the members must f i n d a way to make these changes so t h a t a s a t i s f y i n g shared f a m i l y l i f e c o n t i n u e s . As d e s c r i b e d i n the p rev ious s e c t i o n , l i f e with COPD c r e a t e s f o r c e s t h a t i s o l a t e members from one a n o t h e r . I f the f a m i l y u n i t i s to stay i n t a c t and have a l i f e enjoyed by the members t o g e t h e r , the f a m i l y must ensure t h a t changes i n f a m i l y l i f e are not only compat ib le wi th the i l l member's needs , but c o n t i n u e to meet the needs of the o ther f a m i l y members and the f a m i l y u n i t i t s e l f . Because only those i n d i v i d u a l s wi th COPD who were c u r r e n t l y l i v i n g wi th o ther s and par t of a s e l f - d e f i n e d f a m i l y u n i t met the c r i t e r i a f o r i n c l u s i o n i n t h i s s tudy , the r e sea rch does not r e f l e c t the exper i ence of those f a m i l i e s t h a t were unable to ach ieve the l e v e l of f a m i l y work necessary to keep the f a m i l y u n i t t o g e t h e r . Some i l l a d u l t s c o n t a c t e d d u r i n g the process of e n t e r i n g f a m i l i e s i n t o the r e s e a r c h i n d i c a t e d t h a t a minimal degree of s a t i s f y i n g f a m i l y l i f e e x i s t e d w i t h i n t h e i r f a m i l i e s . Two men expressed i n t e r e s t i n p a r t i c i p a t i n g i n the s tudy , but s a i d t h e i r f a m i l y members were not i n t e r e s t e d i n t h e i r i l l n e s s and would t h e r e f o r e not p a r t i c i p a t e . A l s o a wife of a man with COPD i n d i c a t e d her i n t e r e s t , but s a i d tha t her husband re fused to be i n v o l v e d i n the s tudy . The r e s e a r c h e r 86 dec ided to have i n t e r v i e w s with one of the i l l men and the wife by themselves and s e p a r a t e l y i n an e f f o r t to gain i n s i g h t i n t o how COPD had a f f e c t e d those f a m i l i e s where a l l members were not i n t e r e s t e d i n p a r t i c i p a t i n g , or the f a m i l y s i t u a t i o n d i d not a l low p a r t i c i p a t i o n i n an open f a m i l y d i s c u s s i o n . In these i n t e r v i e w s , both i n d i v i d u a l s d e s c r i b e d how they f e l t they were b a s i c a l l y cop ing wi th t h e i r s i t u a t i o n s a l o n e . Al though they were l i v i n g i n the same homes as t h e i r spouses , s h a r i n g between members and a c t i v i t i e s of the f a m i l y toge ther were almost n o n e x i s t a n t . T h e i r accounts r e f l e c t e d the d i v i s i v e i n f l u e n c e of COPD upon the shared l i f e of the f a m i l y u n i t . From these two e x t r a i n t e r v i e w s as wel l as the p a r t i c i p a n t f a m i l y a c c o u n t s , i t appears as though a commitment of the f a m i l y members i s necessary i n order f o r the f a m i l y to l i v e toge ther i n the c o n f i n e d wor ld demanded by COPD. That the members of the p a r t i c i p a n t f a m i l i e s have a l l e g i a n c e to ma in ta in the f a m i l y u n i t was r e f l e c t e d i n these s t a tements : " A f t e r a l l , we 're man and w i f e . " "Anyways you got ta l i v e wi th i t , what e l s e can you do"? The on ly o ther c h o i c e a v a i l a b l e i s f o r the f a m i l y u n i t to break down. Even though a l l of the p a r t i c i p a n t f a m i l i e s have made the c h o i c e to stay t o g e t h e r , there was an unspoken r e c o g n i t i o n t h a t another c h o i c e e x i s t s . T h i s was r e f l e c t e d by one man who d e s c r i b e d t h a t he d i d not pre s sure h i s wife to q u i t smoking: "I d o n ' t know i f our p o s i t i o n s were r e v e r s e d , I c a n ' t guarantee at a l l t h a t I would q u i t . I might get r i d of her f i r s t . " I t i s i m p l i e d t h a t t h i s demand may be too grea t a s a c r i f i c e fo r 87 the a l r e a d y s t r e s s e d f a m i l y union to be a r . The awareness tha t there i s a l i m i t to the f a m i l y adjustment t h a t can be made was a l so i n d i c a t e d as another f a m i l y d i s c u s s e d the p o s s i b i l i t y of the d i sea se p r o g r e s s i n g . The comment was made: " H e ' s t e l l i n g me t h a t h e ' l l j u s t ship me o f f to a home someplace . " And i n another f a m i l y , the i l l wife expressed the f r u s t r a t i o n and c o n t i n u a l e f f o r t necessary to look at the p o s i t i v e s ide of l i f e when faced wi th the ever present demands of COPD. At the end of the i n t e r v i e w , her husband s a i d , " W e l l , laugh and the wor ld laughs wi th y o u . Weep and you weep a l o n e . " Al though these comments were not pursued i n the d i s c u s s i o n s , they demonstrate the r e c o g n i t i o n t h a t there e x i s t s the c h o i c e to leave the COPD member or c o n s i d e r i n s t i t u t i o n a l i z a t i o n i f the s a c r i f i c e s made w i t h i n the f a m i l y become too g r e a t . Thus , i t i s e v i d e n t t h a t f ami ly work i s necessary i f a mutua l ly s a t i s f y i n g shared f a m i l y l i f e i s to be m a i n t a i n e d . To ach ieve t h i s , each f a m i l y develops s t r a t e g i e s t h a t are compat ib le wi th i t s l i f e s t y l e and i n t e r p r e t a t i o n of i t s s i t u a t i o n . For some f a m i l i e s t h i s means f o c u s i n g on a c t i v i t i e s s t i l l w i t h i n t h e i r c a p a b i l i t i e s : H: You have to spend a l i t t l e b i t more time doing the t h i n g s you enjoy d o i n g , because , i f no th ing e l s e , t h a t w i l l g ive you some form of p l e a s u r e . Whatever i t may be, you have to spend a l i t t l e more time doing t h a t , because i f you are going to spend - - You 've got a l i m i t e d number of hours i n the day t h a t you can a c t u a l l y expend p h y s i c a l l y doing something , sure as heck might as wel l be doing something t h a t you l i k e . Others f i n d new a c t i v i t i e s t h a t the f a m i l y can p a r t i c i p a t e i n t o g e t h e r : 88 H: We have to change some of the p a t t e r n s t h a t we had and do t h i n g s t h a t we would l i k e t h a t we can do t o g e t h e r . Some f a m i l i e s change t h e i r a c t i v i t i e s or the way they do them to energy sav ing p a t t e r n s : IM: W e l l , we go but we go at a low l e v e l sometimes. T h e r e ' s j u s t a b a s i c , going and s i t t i n g down. R: J u s t a slow pace . (W: a slow pace) . . . IM: We're s p e c t a t o r s you know. Sometimes s t a y i n g toge ther means r e c o g n i z i n g the need f o r o thers to have a c t i v i t i e s o u t s i d e the f a m i l y : IM: Or I ' l l make her go out and see p e o p l e . You know for her own. She d o e s n ' t want to be stuck with me. IW: You have to do t h a t . You have each have a b i t of a l i f e of your own, and then we can enjoy our time toge ther i n the e v e n i n g s . F i n d i n g a way to m a i n t a i n a s a t i s f y i n g shared f a m i l y l i f e for a couple where the spouse c o n t i n u e d to smoke meant b iannual t r i p s to M a u i , to an environment s u i t a b l e to t h e i r d i f f e r i n g needs and t h e i r d e s i r e to be t o g e t h e r : IM: T h a t ' s what ' s g rea t about M a u i . There you can be o u t s i d e . You d o n ' t worry about a i r c o n d i t i o n i n g . We can be toge ther o u t s i d e . My wife can smoke and i t d o e s n ' t bother me. The i l l member's energy c a p a b i l i t i e s g r e a t l y i n f l u e n c e s the k inds of s t r a t e g i e s the f a m i l y can d e v e l o p . The g r e a t e r the energy c a p a c i t y the g r e a t e r the a b i l i t y to develop new p a t t e r n s to meet the needs of the f a m i l y group. When energy i s extremely l i m i t e d , so are the f a m i l y ' s o p t i o n s . I t i s w i t h i n these extremely energy l i m i t e d f a m i l i e s t h a t the g r e a t e s t 89 p o t e n t i a l appears to e x i s t f o r f a m i l y d i s r u p t i o n . Because l i m i t e d energy i s a v a i l a b l e to develop new p a t t e r n s , o l d a c t i v i t i e s must s imply be stopped and a r e s t r i c t e d shared f a m i l y l i f e a c c e p t e d . Regard les s of whether the f a m i l y can develop new p a t t e r n s , or adapt o l d ones , a l l d e s c r i b e d how they have to accept t h e i r l i m i t a t i o n s and l i v e w i t h i n t h e s e : "You can only do the best you c a n . " " I t ' s something you j u s t have to l e a r n to l i v e w i t h . You j u s t have to get used to i t , you know." "You j u s t have to keep t r y i n g to help y o u r s e l f and help each o t h e r . You do the best you can t o d a y . " Another s t r a t e g y used to m a i n t a i n f a m i l y l i f e i s to r e d e f i n e r o l e s w i t h i n the f a m i l y i n a way t h a t r e t a i n s a c o n t r i b u t i n g p lace fo r the i l l member. As d e s c r i b e d e a r l i e r , f ami ly r o l e s are a l t e r e d because of the reduced c a p a b i l i t i e s of the COPD member. M a i n t a i n i n g a va lued p lace f o r the i l l member dur ing t h i s process supports the f a m i l y ' s a b i l i t y to stay toge ther and f i n d a s a t i s f y i n g f a m i l y l i f e . However, the d i f f i c u l t y of a c h i e v i n g t h i s goal because of the b l u r r e d l i n e s of the i l l member's a b i l i t i e s i s i l l u s t r a t e d i n the f o l l o w i n g passage: D: We are a l l wondering what on ea r th are we going to do when she ' s gone and we c a n ' t tu rn to her and a l l those t h i n g s . And then even now when we do we t h i n k , ' S h o u l d we'? Because she ' s got a l l these o ther t h i n g s to worry about . Should we be b o t h e r i n g her with our problems? But then on the o ther hand, when we d o n ' t come to h e r , she f e e l s as i f she ' s not c o n t r i b u t i n g . So y o u ' r e s o r t of stuck i n the m i d d l e . How much can you r e a l l y ask her to do wi thout o v e r t a x i n g h e r , but not making her f e e l as though 90 she ' s t o t a l l y , I d o n ' t know - - not u s e l e s s . But she l i k e s to be kept i n t o u c h . That the f a m i l y members make a c o n s c i o u s e f f o r t to communicate tha t the COPD member s t i l l has an impor tant p lace w i t h i n the f a m i l y was e v i d e n t d u r i n g the i n t e r v i e w s , by such comments as : D: I t ' s f r u s t r a t i n g fo r us t o o , i n t h a t we can see t h a t she - - I t h i n k q u i t e o f ten she f e e l s l i k e she should be doing more. I mean, I t h i n k she does more than most people anyway, but she f e e l s as though she should be doing more. And we can see t h a t she d o e s n ' t l i k e t h a t h e r s e l f , and i t makes her f e e l k inda down. ' O h , I d i d n ' t do any th ing t o d a y . ' And then she t e l l s you what she d i d , and you j u s t about f ee l l i k e c o l l a p s i n g y o u r s e l f . But , so i t makes me f ee l sad fo r her t h a t she f e e l s she ' s not c o n t r i b u t i n g when I would say t h a t she i s . In f a m i l i e s where the wel l members d i d v i r t u a l l y a l l household t a s k s , the i l l member's c o n t r i b u t i o n c o u l d s t i l l be i d e n t i f i e d : W: You were always good at adding up, bookkeep ing . Good t h i n g , ' cause I c a n ' t . W: They gave him t h i s machine which i s what they c a l l a V e n t o l i n machine . And he mixes i t up h i m s e l f , wi th so many m i l l i m e t e r s of s a l i n e , you know. And he can do t h a t h i m s e l f , so he d o e s n ' t have to have anybody. I c o u l d n ' t do i t , to t e l l you the t r u t h . Al though these tasks c o u l d have been e a s i l y assumed by o t h e r s , they symbol ize the importance of the COPD member to the group. The comments i l l u s t r a t e the attempt to communicate acceptance of the i l l member as changed w h i l e making a va lued p lace f o r t h a t changed member i n the f a m i l y . The work of r e d e f i n i n g the i l l member's p lace w i t h i n the f a m i l y i n a meaningful way i s an i n t e g r a l p a r t of the c h a l l e n g e of m a i n t a i n i n g a s a t i s f y i n g shared f a m i l y l i f e . 91 D. Managing the I l l n e s s To moni tor and manage the COPD member's i l l n e s s pre sent s another c h a l l e n g e to the f a m i l y wi th COPD. Al though the l i f e s t y l e changes ma in ta ined by the f a m i l y are aimed at c o n t r o l l i n g the symptoms, s t r a t e g i e s s p e c i f i c to cop ing wi th the t h r e a t of acute e x a c e r b a t i o n s are a l so employed. The e n t i r e f a m i l y , f o r example, l e a r n s to i d e n t i f y p o t e n t i a l problems and i n i t i a t e c o n t r o l , even though the i l l member may take the pr imary r e s p o n s i b i l i t y : R: You mean t h a t you f ee l t h a t you have t o , or should know what ' s going on too with h e r , so t h a t you can - - ? D: J u s t so we know, w e l l , today which t h i n g i s c aus ing her problems . So t h a t you can s o r t of f i g u r e out w h i c h , you know, t h i n g to t r y and keep under c o n t r o l . The f a m i l y members become a l e r t to s u b t l e s igns t h a t s i g n i f y a d e t e r i o r a t i o n i n the i l l member's h e a l t h : D : . But you can always t e l l when she ' s on a bad day or not j u s t by t a l k i n g to h e r . The way she answers the phone, the way she ' s gasping or not t a l k i n g . And y e t , she t r i e s to rea s sure y o u . R: So y o u ' v e got your own ears now f o r f i g u r i n g o u t , l i s t e n i n g to the words she i s s ay ing as wel l as how she i s s ay ing i t . D: Umhmm (Noddi n g ) . W: He i s on a n t i b i o t i c s so much, and he w i l l be on one and a l l of a sudden he i s s i c k a g a i n , and i t d o e s n ' t work, and then he has to go on another one. I t ' s j u s t h o r r i b l e . But he coughs . I can always see when i t i s coming, you know. His ches t i s a l l g u r g l y . As the passages i l l u s t r a t e , even though the COPD member may not express how s/he i s h o n e s t l y f e e l i n g , the o ther members come to 92 l e a r n how to i n t e r p r e t cues i n the i l l member's behav iour themse lve s . One s i g n i f i c a n t f a c t o r , however, t h a t i n f l u e n c e s the f a m i l y ' s a b i l i t y to meet t h i s c h a l l e n g e i s i t s knowledge of the d i sea se and i t s t r ea tment . The f a m i l i e s s t r e s s e d t h a t an important pa r t of g a i n i n g t h i s knowledge i s to be g iven adequate i n f o r m a t i o n by h e a l t h care worker s : D: I r e a l l y f ee l very s t r o n g l y about t h a t though, t h a t i t ' s important to have t h i n g s e x p l a i n e d . . . . I t ' s not so important f o r me because I'm not here a l l the t i m e , but I can unders tand how my Mom would want to know as much as she c a n . W: You r e a l l y need to u n d e r s t a n d . I mean, I d i d n ' t . No, I r e a l l y d i d n ' t u n d e r s t a n d . When I was s ay ing t h a t , w e l l , he c a n ' t get h i s b r e a t h , and what about g i v i n g him oxygen? But then I d i d n ' t r e a l i z e u n t i l i t was e x p l a i n e d to me t h a t i t ' s - - i t ' s r e a l l y the a i r t h a t i s n ' t coming o u t . T h a t ' s way he c a n ' t b r e a t h e . Because h e ' s a l r eady got a i r i n . But I should have known t h a t because I , you know, I ' d read a l l about t h a t before and had i t e x p l a i n e d to me, but j u s t D: Sometimes you have to read i t and hear i t s evera l t imes before i t p e n e t r a t e s . From t h i s f a m i l y ' s comments, i t i s a l s o c l e a r t h a t the i n f o r m a t i o n must be communicated r e p e a t e d l y and i n a manner tha t ensures the f a m i l y members have unders tood and can apply One source of i n f o r m a t i o n t h a t was i d e n t i f i e d by the f a m i l i e s was the r e s p i r a t o r y r e h a b i l i t a t i o n program. The nurse in the program, s p e c i f i c a l l y , was viewed as a v a l u a b l e source of p e r t i n e n t and a c c e s s i b l e i n f o r m a t i o n : W: W e l l , you f ee l you do have more s u p p o r t , d e f i n i t e l y . I f ee l t h a t you know with the nurses down t h e r e . 93 D: W e l l , there i s somebody you can ask a q u e s t i o n . . . . I mean i f we have a q u e s t i o n , we can f ee l l i k e we can get an answer. Without adequate i n f o r m a t i o n the f a m i l i e s do not have a s u f f i c i e n t b a s i s f o r making d e c i s i o n s and t r o u b l e s h o o t i n g problems tha t a r i s e , as i s p l a i n l y i l l u s t r a t e d i n the f o l l o w i n g passage: IW: But I t h i n k i f somebody had once s a i d to me t h a t these Aminophy11 ine p i l l s or whatever t h e y ' r e c a l l e d , I was t a k i n g Theodur , had a tendency to make you nauseous - - (D: But Mom sometimes the power of sugges t ion i s so s t r o n g . ) Yeah, but I d o n ' t work on powers of s u g g e s t i o n . (D: But a l o t of people m i g h t . ) R: Are you s ay ing i f you knew the s ide e f f e c t s to watch out y o u r s e l f ? H: R i g h t . (D2: You might have diagnosed the problem sooner . IW: Much sooner . . .) I h o n e s t l y f ee l t h a t i f you had been t o l d of the s i d e - e f f e c t s you w o u l d n ' t have got ten i n t o t h a t c o n d i t i o n . (IW: T h a t ' s what I'm s a y i n g . I w o u l d n ' t have, no way.) The i l l woman had l o s t tremendous weight before the f a m i l y f i n a l l y stumbled onto the i n f o r m a t i o n t h a t Theodur can cause nausea. T h i s i n f o r m a t i o n came from a t e c h n i c i a n who moni tored the oxygen machine i n the home. C l e a r l y , adequate i n f o r m a t i o n i s a b a s i c i n g r e d i e n t i n the success of the f a m i l y to manage the i l l n e s s . Another s t r a t e g y f o r managing the i l l n e s s i s to e s t a b l i s h a backup system f o r when the f a m i l y can no l o n g e r cope a l o n e . The main backup mentioned by the f a m i l i e s was f o r emergencies : " I f I get f l u s t e r e d then I c a l l the p a r a m e d i c s . " "I know the f i remen are j u s t a b lock away." A doc tor i n whom the f a m i l y f e e l s c o n f i d e n t i s d e s c r i b e d 94 as a major source of t h i s s u p p o r t : " T h a t ' s h a l f the b a t t l e . " T h i s means someone seen to have the e x p e r t i s e to p rov ide the complex medical care they f e e l i s needed, and who knows the i l l p e r s o n ' s h i s t o r y : IW: Oh, I f e l t much b e t t e r be ing i n the h o s p i t a l t h e r e , because t h e r e ' s two d o c t o r s , both of them working out of the same h o s p i t a l and both of them know my h i s t o r y r i g h t from the very b e g i n n i n g . F i n d i n g a doc tor t h a t w i l l make house c a l l s i s a l so a s i g n i f i c a n t backup support fo r f a m i l i e s . For when the COPD member becomes a c u t e l y i l l , the e f f o r t of t r a v e l l i n g out of the house to the d o c t o r ' s o f f i c e or Emergency Department can be too much of a demand on t h e i r l i m i t e d energy s u p p l y . Al though good medical care i s seen as e s s e n t i a l , the f a m i l i e s e x p l a i n e d t h a t they do not r e l y s o l e l y on t h e i r p h y s i c i a n s , but assume f o r themselves the pr imary r o l e i n the management of the i l l n e s s . They see themselves as the exper t s about t h e i r own members' i l l n e s s . The f a m i l i e s ' comments i n d i c a t e d t h a t they have l e a r n e d t h a t they are an e s s e n t i a l par t of e n s u r i n g the safe management of the i l l n e s s . T h i s was c l e a r l y demonstrated i n a f a m i l y who d e s c r i b e d i t s c a r e f u l management of the i l l n e s s a f t e r a n e a r l y f a t a l exper i ence tha t was viewed as r e s u l t i n g from inadequate medical m o n i t o r i n g : IW: I s t a r t e d going down, down, down, and r e a l l y nobody c o u l d f i g u r e out what was happening to me. . . . I wasn ' t e a t i n g , and I was t a k i n g high b lood pres sure p i l l s . And my doc tor had t o l d me, and I had asked him and asked h im, my own doc tor (not the s p e c i a l i s t ) , ' D i d I need more potass ium with t h e s e ' ? Because I unders tand high b lood p r e s s u r e . 'Oh no, no. These are new ones and they d o n ' t a f f e c t you tha t way . ' So I'm not worry ing about i t , I d r i n k a g las s of orange j u i c e i f I f ee l l i k e i t , and i f I d o n ' t f e e l l i k e i t , I d o n ' t b o t h e r . . . . Anyway, so my e l e c t r o l y t e s were a l l s c rambled , I was j u s t - -Well I went i n t o a coma, t h a t ' s what happened! The f a m i l y l i v i n g with COPD l e a r n s t h a t i t p l ays a pr imary r o l e in managing acute e x a c e r b a t i o n s as wel l as c o n t r o l l i n g symptoms: IW: Oh, I t h i n k I do (have to know about managing my i l l n e s s ) Because you never know f o r sure which h o s p i t a l you are going to end up i n . And i f you end up i n one where t h e r e ' s no doc tor t h a t knows your case at a l l , they are j u s t scared s t i f f when, you know. They ask you what k i n d of drugs you are on and you g ive t h i s l i s t t h a t ' s t h i s l o n g . D: And then when you u s u a l l y end up i n there i t ' s p r e t t y c r i t i c a l . She c a n ' t even t a l k , so then you are s i t t i n g t h e r e , and nobody knows what to do. H: The next t i m e , ( t h a t the wi fe was very i l l ) I phoned the doc tor and he s a i d , he asked me, he s ays , 'Do you t h i n k she should be i n the h o s p i t a l ' ? I f e l t l i k e s a y i n g , ' W e l l , j e e z , y o u ' r e the d o c t o r . ' But I s a i d , ' Y e s , I h o n e s t l y b e l i e v e she should b e . ' So he j u s t took a look at her and made arrangements to t r a n s f e r her i n t o (the h o s p i t a l ) . R: So do you f ee l l i k e you have to know about her i l l n e s s and be able to watch and see her changes , as wel 1 ? H: Oh a b s o l u t e l y , a b s o l u t e l y . (D: You c a n ' t r e l y on the d o c t o r s . IW: No, you c a n ' t r e l y on the d o c t o r s . ) The f a m i l y knows tha t the COPD member's i l l n e s s i s complex and tha t not a l l general medical p r a c t i t i o n e r s w i l l be able to e f f e c t i v e l y manage the care wi thout the f a m i l y ' s h e l p . T h e r e f o r e , the f a m i l y e x e r c i s e s i t s r e s p o n s i b i l i t y f o r managing the i l l n e s s w i t h i n i t s c a p a b i l i t i e s . Yet the h e a l t h care system can p r o v i d e b a r r i e r s to the 96 f a m i l y ' s involvement i n the management of the i l l n e s s to the degree tha t i t s knowledge equips i t t o . For example, some of the f a m i l i e s d e s c r i b e d how they are not even c o n s u l t e d about the i l l member's c o n d i t i o n when s/he i s i n the d o c t o r ' s o f f i c e or i n h o s p i t a l . The f a m i l y a c q u i r e s indepth knowledge about the i l l member's i l l n e s s and develops s t r a t e g i e s to moni tor and manage the i l l n e s s . However, the f a m i l y can on ly manage to the degree t h a t i t i s p r o v i d e d the necessary t o o l s from h e a l t h care p r o v i d e r s , and i t s a b i l i t y to p a r t i c i p a t e i n the care of i t s member i s r e s p e c t e d . To f i n d a way to l i v e wi th the demands of COPD means the f a m i l y has to work to develop s t r a t e g i e s f o r f a c i n g the c h a l l e n g e s the i l l n e s s b r i n g s . T h i s f a m i l y works i n v o l v e s : a c c e p t i n g the c h r o n i c nature of COPD, f a c i n g an u n c e r t a i n f u t u r e , m a i n t a i n i n g a s a t i s f y i n g shared f a m i l y l i f e , and managing the i l l n e s s . When the work of the f a m i l y i s viewed i n l i g h t of the two prev ious themes, i t i s c l e a r t h a t there i s u l t i m a t e l y a c e n t r a l focus i n the f a m i l y with COPD - - the work to b r e a t h e . As one p a r t i c i p a n t s a i d , "But of c o u r s e , through i t a l l you have to b r e a t h e . " I t i s work t h a t en force s a d i s e a s e - d i c t a t e d l i f e s t y l e on the f a m i l y and b r i n g s i s o l a t i o n fo r the f a m i l y . Summary T h i s chapter has presented the p a r t i c i p a n t f a m i l i e s ' accounts of l i f e wi th COPD. The d e s c r i p t i o n progres sed from 97 the d e s c r i p t i o n of a d i s e a s e - d i c t a t e d f a m i l y l i f e , to the i s o l a t i o n t h a t accompanies the i l l n e s s , to the f i n a l theme of the f a m i l y work necessary to l i v e wi th COPD. The meaning of l i v i n g wi th COPD fo r the f a m i l y as d e s c r i b e d i n t h i s chapter i s i l l u s t r a t e d i n F i g u r e 1, below. In the f o l l o w i n g c h a p t e r , these f i n d i n g s and t h e i r s i g n i f i c a n c e w i l l be d i s c u s s e d . Physical Environment Social Environment Heal th Care Deli very System Cultural Environment ISOLATION -of the individuals within the family -of the family unit FAMILY LIVING WITH COPD FAMILY WORK -accept chronic nature of COPD -face uncertain future -maintain shared family l i f e -manage the i l lness DISEASE-DICTATED FAMILY LIFE -breather-protected environment -energy economy -present-time orientation -altered roles Figure 1. The Meaning of Living with COPD for the Family CHAPTER FIVE D i s c u s s i o n and I m p l i c a t i o n s T h i s chapter p r o v i d e s a d i s c u s s i o n of the r e sea rch f i n d i n g s presented i n the p r e v i o u s chapter and a p r e s e n t a t i o n of the n u r s i n g i m p l i c a t i o n s . The d i s c u s s i o n focuses upon the s i g n i f i c a n c e of the f i n d i n g s i n terms of the w e l l - b e i n g of the f a m i l y who has an a d u l t member wi th COPD, the p lace of the f i n d i n g s w i t h i n the c o n t e x t of c u r r e n t t h e o r y , and the i m p l i c a t i o n s of these f i n d i n g s f o r n u r s i n g . The d i s c u s s i o n i s o r g a n i z e d i n t o three s e c t i o n s . The f i r s t s e c t i o n , " s t r e s s o r of COPD," examines the f i n d i n g s t h a t i n d i c a t e the q u a l i t y of the s t r e s s o r exer ted by COPD upon the f a m i l y . The second s e c t i o n , " impact of COPD on f a m i l y r e s o u r c e s , " addresses the i n f l u e n c e of COPD on the f a m i l y ' s r e sources to deal wi th t h i s s t r e s s o r . The f i n a l s e c t i o n , " n u r s i n g i m p l i c a t i o n s , " i d e n t i f i e s s p e c i f i c i m p l i c a t i o n s these f i n d i n g s p rov ide f o r n u r s i n g p r a c t i c e and f u r t h e r r e s e a r c h . Throughout t h i s d i s c u s s i o n , r e f e r e n c e i s made to l i t e r a t u r e reviewed i n Chapter Two and to a d d i t i o n a l l i t e r a t u r e r e q u i r e d to p rov ide the c o n t e x t fo r the r e sea rch f i n d i n g s . S t r e s s o r of COPD The conten t of the three themes c o n s t r u c t e d from the f a m i l i e s ' accounts i n d i c a t e s t h a t COPD exer t s an i n t e n s e s t r e s s o r w i t h i n the l i f e of the f a m i l y . To p rov ide a contex t in which to c o n s i d e r these f i n d i n g s , the f o l l o w i n g d i s c u s s i o n 99 begins with a b r i e f overview of s t r e s s i n r e l a t i o n to f a m i l y f u n c t i oni ng . For the purpose of t h i s d i s c u s s i o n , s t r e s s i s d e f i n e d as a n o n s p e c i f i c response of the system to any demand upon i t , and a s t r e s s o r i s d e f i n e d as any demand t h a t i n c r e a s e s the need f o r read jus tment ( S e y l e , 1977) . A c c o r d i n g to S e y l e ' s d e f i n i t i o n , a s i t u a t i o n can produce e u s t r e s s (agreeable s t r e s s ) or d i s t r e s s ( d i s a g r e e a b l e s t r e s s ) . I t i s the i n t e n s i t y of the demand f o r read jus tment or a d a p t a t i o n and the re source s of the system to deal with t h i s demand t h a t determine the e f f e c t of the s t r e s s o r ( S c o t t , Obers t & D r o p k i n , 1980) . In r e l a t i o n to f a m i l y f u n c t i o n i n g , the f a m i l y i s c o n t i n u a l l y c o n f r o n t e d by , and thus adapt ing t o , s t r e s s o r s . I f the f a m i l y i s to adapt i n a way t h a t ma in ta in s an e f f e c t i v e l e v e l of f a m i l y f u n c t i o n i n g and w e l l - b e i n g , the s t r e s s o r s exper i enced by the f a m i l y must be ba lanced by the f a m i l y ' s r e sources to deal wi th these demands (Fr iedman, 1981) . A key determinant i n the s t r e n g t h of the demand f o r a d a p t a t i o n i s the f a m i l y ' s d e f i n i t i o n of the s t r e s s o r . In o ther words , the f a m i l y r e a c t s not only to the presence of a s t r e s s o r but to i t s p e r c e p t i o n of the c h a l l e n g e t h i s poses (Hansen & H i l l , 1964) . Because the focus of t h i s d i s c u s s i o n i s to c o n s i d e r the exper ience found to be common to f a m i l i e s l i v i n g with COPD, t h i s d i s t i n c t l y i n d i v i d u a l component of the f a m i l y ' s response to s t r e s s , a l though i n t e g r a l to ga in an under s t and ing of each f a m i l y ' s e x p e r i e n c e , i s not i n c l u d e d i n t h i s d i s c u s s i o n of the common f a m i l y exper i ence wi th COPD. The focus of t h i s 100 d i s c u s s i o n i s to e x p l o r e , f i r s t , the r e sea rch f i n d i n g s tha t i n d i c a t e the q u a l i t y of the s t r e s s exer ted by COPD w i t h i n the f a m i l y , and second, to address the f i n d i n g s t h a t i n d i c a t e the i n f l u e n c e COPD exer t s on the f a m i l y ' s r e sources to deal wi th t h i s s t r e s s o r . As was presented i n the l i t e r a t u r e r e v i e w , i l l n e s s has long been r e c o g n i z e d to ac t as a s t r e s s o r w i t h i n f a m i l y l i f e (Hansen & H i l l ; 1964; Koos , 1946; M i t c h e l l , 1983) . In congruence with t h i s t h e o r e t i c a l p e r s p e c t i v e , the r e s e a r c h f i n d i n g s revea l t h a t COPD ac t s as a s t r e s s o r on the f a m i l y u n i t . More i m p o r t a n t , the f i n d i n g s i n d i c a t e the q u a l i t y of t h i s s t r e s s o r fo r the f a m i l y . The d u r a t i o n and s t r e n g t h of s t r e s s o r s are known to d i f f e r ; thus each c r e a t e s d i f f e r e n t demands on the system f o r a d a p t a t i o n (Fr iedman, 1981) . Knowledge of the q u a l i t y of the s t r e s s o r of COPD fo r the f a m i l y , t h e n , c o n t r i b u t e s to the t h e o r e t i c a l base nurses can use to p rov ide care aimed toward d e c r e a s i n g the s t r e n g t h of t h i s s t r e s s o r a c t i n g upon the f a m i l y u n i t . The r e sea rch f i n d i n g s t h a t most c l e a r l y revea l the powerful nature of the s t r e s s o r of COPD f o r the f a m i l y a r e : the p e r v a s i v e changes i n f a m i l y l i f e r e q u i r e d to a d j u s t to COPD, the e x t e n s i v e l o s s e s exper i enced by the f a m i l i e s , the p r i o r i t y g iven to the i l l member's needs , and the type of c h a l l e n g e s t h a t r e s u l t e d from l i v i n g wi th COPD. Each of these f i n d i n g s i s d i s c u s s e d i n the f o l l o w i n g s e c t i o n . I t was found t h a t the f a m i l i e s adopted common l i f e s t y l e changes to adapt to t h e i r members' i l l n e s s ; i n d e e d , t h a t the 101 nature of the i l l n e s s demanded these changes . Rather than being chosen ways of cop ing wi th the i l l n e s s e x p e r i e n c e , i t was as though the l i f e s t y l e changes were imposed on the f a m i l y by the very nature of the d i s e a s e . For no matter what the f a m i l y ' s background, cop ing s t y l e , or p h i l o s o p h y , a l l f a m i l i e s were found to have made the same l i f e s t y l e changes . The f a m i l i e s l i v e d w i t h i n a b r e a t h e r - p r o t e c t e d env i ronment , an energy economy, and a p r e s e n t - t i m e o r i e n t a t i o n , and made r o l e a l t e r a t i o n s w i t h i n the f a m i l y . I f the f a m i l i e s were to l i v e wi th the i l l members and support t h e i r h e a l t h , complying wi th a "COPD l i f e s t y l e " appeared to be requi r e d . The l i f e s t y l e changes the f a m i l i e s were found to adopt f o l l o w l o g i c a l l y from the known symptoms of COPD: shor tnes s of breath and energy d e p l e t i o n . A c c o r d i n g l y , the four a spects of the l i f e s t y l e found i n t h i s study are congruent wi th the types of r e s t r i c t i o n s noted i n s t u d i e s of the i n d i v i d u a l who has COPD by Chalmers (1984) and Dudley , G l a s e r , Jorgenson & Logan (1980) . These r e s e a r c h e r s found t h a t the i n d i v i d u a l s who have COPD are r e s t r i c t e d i n a c t i v i t i e s , r o l e s , and r e l a t i o n s h i p s by shor tnes s of breath and s e n s i t i v i t y to i r r i t a n t s , reduced energy r e s e r v e s , and the v a r i a b i l i t y of symptoms. Al though the author found no o ther s t u d i e s of the f a m i l y with COPD wi th which to compare the l i f e s t y l e changes i d e n t i f i e d i n t h i s r e s e a r c h , these changes a l s o concur with the e f f e c t s of husbands' COPD on the l i v e s of t h e i r wives tha t were d e s c r i b e d 102 in a study by Sexton (1984) . Sexton found tha t l i v i n g with men who had COPD meant t h a t the w i v e s : l i m i t e d t h e i r a c t i v i t i e s , had d i f f i c u l t y p l a n n i n g ahead, kept i n f o r m a t i o n and the e x p r e s s i o n of s t rong f e e l i n g s from t h e i r husbands, assumed vacated r o l e s , and took on new r e s p o n s i b i l i t i e s . B u i l d i n g upon these p rev ious f i n d i n g s , t h i s r e search of the f a m i l y with COPD i n d i c a t e s t h a t i n order to cope with the nature of the i l l n e s s s p e c i f i c l i f e s t y l e changes must be adopted , and moreover tha t the l i m i t a t i o n s imposed by these changes , p r e v i o u s l y d e s c r i b e d for i n d i v i d u a l s with COPD and w i v e s , are l i m i t a t i o n s of the e n t i r e f a m i l y . The need to r ede s i gn l i f e s t y l e s to accommodate f o r the symptoms of an i l l n e s s and to ad ju s t to these l i f e s t y l e changes has been found to be a common task of l i v i n g wi th a c h r o n i c i l l n e s s ( C r a i g & Edwards, 1983; Dimond & Jones , 1983a; S t rauss et al . , 1 984) . Thus , the l i f e s t y l e changes found to be commonly adopted by the f a m i l i e s with COPD are r e p r e s e n t a t i v e of a wel l r e c o g n i z e d phenomena of the c h r o n i c i l l n e s s e x p e r i e n c e . However, the degree of the l i f e s t y l e changes made by these f a m i l i e s s i g n i f i e s the powerful s t r e n g t h of the s t r e s s o r produced by COPD. For having an a d u l t member with COPD d i d not r e s u l t i n minor adjustments i n f a m i l y l i f e , but i n major l i f e s t y l e changes . The i l l n e s s d i c t a t e d what the f a m i l i e s c o u l d do, where they c o u l d do i t , when they c o u l d do i t , and how i t c o u l d be done. Because of the c o n s t r a i n t s on f a m i l y l i f e as a r e s u l t of the d i c t a t e d "COPD l i f e s t y l e , " the f a m i l i e s were a l s o found to exper ience l o s s e s of many va lued aspects of f a m i l y l i f e . T h i s f i n d i n g a l s o supports the predominant t h e o r e t i c a l p e r s p e c t i v e tha t c h r o n i c i l l n e s s b r i n g s concomitant l o s s e s , and d e a l i n g with these l o s s e s i s an i n t e g r a l pa r t of the process of a d j u s t i n g to c h r o n i c i l l n e s s ( C a r l s o n , 1978; C r a t e , 1965; Feldman, 1974) . What i s s t r i k i n g about the l o s s e s exper i enced by the f a m i l i e s with COPD i s the e x t e n s i v e nature of the l o s s e s , f o r the f a m i l i e s expressed the l o s s e s of p r e v i o u s l y wel l f a m i l y members, f a m i l y group a c t i v i t i e s , s o c i a l i z a t i o n p a t t e r n s , and even aspects of f a m i l y r e l a t i o n s h i p s . The p e r v a s i v e changes demanded to ad ju s t to a l i f e s t y l e compat ib le with COPD and the e x t e n s i v e l o s s e s t h i s meant emphasises the s t r e n g t h of the demand f o r adjustment COPD exer t s w i t h i n f a m i l y l i f e . The i n t e n s i t y of the s t r e s s o r exer ted by COPD i s f u r t h e r h i g h l i g h t e d when the re sea rch f i n d i n g s are c o n s i d e r e d i n l i g h t of the m u l t i p l e f u n c t i o n s of the f a m i l y . The f a m i l y u n i t f u n c t i o n s to meet the p h y s i c a l and p s y c h o l o g i c a l needs of a l l members (Fr iedman, 1981) . McCubbin et a l . (1980) e x p l a i n t h a t the f a m i l y with an i l l member must manage many f a c e t s of l i f e s i m u l t a n e o u s l y : m a i n t a i n i n g s a t i s f a c t o r y i n t e r n a l c o n d i t i o n s fo r communications and f a m i l y o r g a n i z a t i o n , promoting member independence and s e l f - e s t e e m , maintenance of f a m i l y bonds of coherence and u n i t y , maintenance and development of s o c i a l supports i n t r a n s a c t i o n s wi th the community, and maintenance of some e f f o r t s to c o n t r o l the impact of the s t r e s s o r and the 104 amount of change i n the f a m i l y u n i t . I t was found t h a t i n the f a m i l i e s with a member with COPD, p r i o r i t y was g iven to those behav iours tha t ma inta ined ease of b r e a t h i n g . Thus , i n most f a m i l i e s , o ther needs became of secondary importance to the i l l member's h e a l t h needs. For example, the need to m a i n t a i n open communication was supraceded by the need to r e s t r i c t the e x p r e s s i o n of s t rong emotions t h a t may induce b r e a t h l e s s n e s s . To l i v e w i t h i n a b r e a t h e r - p r o t e c t e d environments and energy economies , the f a m i l i e s were i s o l a t e d from many aspect s of t h e i r s o c i a l w o r l d . F u r t h e r m o r e , i t was found t h a t i n order to modify f a m i l y l i f e i n a way compat ib l e wi th COPD, o ther f a m i l y members o f ten s a c r i f i c e d the s a t i s f a c t i o n of t h e i r d e s i r e s , such as to smoke i n the home, c o n t i n u e energy expensive a c t i v i t i e s , and a t t end s p e c i f i c s o c i a l g a t h e r i n g s . I t i s c h a r a c t e r i s t i c d u r i n g p e r i o d s of high degrees of s t r e s s t h a t tremendous energy i s expended to cope wi th the t h r e a t , and many o ther f a m i l y f u n c t i o n s are o f ten t e m p o r a r i l y set a s ide or m i n i m a l l y performed u n t i l the f a m i l y has the re sources to deal with these again (Fr i edman , 1981; M i t c h e l l , 1983) . F i n d i n g t h a t the needs of o ther members or o ther f a m i l y needs become of secondary import i n these f a m i l i e s i m p l i e s t h a t the i n t e n s i t y of the s t r e s s exper i enced r e q u i r e s s i g n i f i c a n t f a m i l y energy and re source s to cope with i t . As these f a m i l i e s were a l s o found to l i v e w i t h i n an energy economy, when the energy consumed i n cop ing wi th the s t r e s s o r of the i l l n e s s i s g r e a t , i t may leave l i t t l e energy to expend i n meeting o ther 105 f a m i l y needs . S t raus s et a l . (1984) i n d i c a t e t h a t the degree of s t r e s s imposed by a d i sea se i s r e f l e c t e d by the degree of the i m p o s i t i o n on o ther f a m i l y members. From t h i s p e r s p e c t i v e , there i s a high degree of s t r e s s exer ted by COPD w i t h i n the fami1y. MacVicar and A r c h b o l d (1976) i n d i c a t e t h a t there i s a n e c e s s i t y i n f a m i l i e s wi th a c h r o n i c a l l y i l l member to o r g a n i z e around the e x i g e n c i e s needed to m a i n t a i n the ba lance between f a m i l y and the i l l member's needs . Given the f i n d i n g t h a t the needs of the members wi th COPD are g iven p r i o r i t y i n these f a m i l i e s , i t appears t h a t f o r the f a m i l y wi th COPD t h i s ba lance i s almost i m p o s s i b l e to a c h i e v e . Penn (1983) s t a t e s : "A p a r t i c u l a r form of b i n d i n g i n t e r a c t i o n e x i s t s i n f a m i l i e s wi th c h r o n i c i l l n e s s , tha t winds i t s e l f around the f a m i l y system, o f ten h o l d i n g i t s t a t i c under the t h r e a t of death" (p . 23 ) . In the case of the f a m i l i e s with COPD, the ever present f ea r of b r e a t h l e s s n e s s appeared to i n t e n s i f y t h i s u n d e r l y i n g t h r e a t of d e a t h , to c r e a t e an even more powerful ho ld on f a m i l y l i f e . Indeed, i t was one t h a t demanded t h a t the f a m i l i e s conform to a l i f e s t y l e aimed at a v o i d i n g b r e a t h l e s s even though t h i s l i f e s t y l e c r e a t e d p e r v a s i v e change i n f a m i l y p a t t e r n s , brought l o s s e s f o r the f a m i l y , and meant the s a t i s f a c t i o n of o ther f a m i l y needs were s a c r i f i c e d . The i n t e n s i t y of the s t r e s s o r exer ted by COPD i s a l s o r e v e a l e d by the nature of the major c h a l l e n g e s t h a t were found to be faced by f a m i l i e s l i v i n g wi th COPD. S i g n i f i c a n t energy was r e q u i r e d to a d j u s t to the c h r o n i c , l o n g - t e r m nature of the 106 d i s e a s e , the l o s s e s the i l l n e s s b rought , and to accept t h a t f a m i l y l i f e was permanently changed. The u n c e r t a i n t y of the fu ture was emphasized f o r the f a m i l i e s , a r e a l i t y fo r which they had to develop ways of c o p i n g . The r e l a t i o n s h i p s w i t h i n the f a m i l y and p a t t e r n s of everyday l i f e were d i s r u p t e d to the p o i n t tha t the f a m i l i e s had to work to m a i n t a i n the i n t e g r i t y of the u n i t . At the same time the f a m i l i e s faced the ever pre sent task of managing the i l l n e s s . From the nature of these c h a l l e n g e s , i t i s c l e a r t h a t COPD c r e a t e d cont inuous s t r e s s o r s w i t h i n the f a m i l i e s , demanding t h e i r c o n t i n u i n g e f f o r t s to cope , i f the f a m i l i e s were to a d j u s t and s u r v i v e . The powerful nature of the s t r e s s o r of COPD f o r the f a m i l y u n i t was r e v e a l e d by the p e r v a s i v e changes i n the f a m i l i e s ' l i v e s , the e x t e n s i v e l o s s e s they e x p e r i e n c e d , the p r i o r i t y g iven to the needs of the members wi th COPD, and the c h a l l e n g e s faced by the f a m i l i e s . From the s t r e s s theory presented at the beg inn ing of the d i s c u s s i o n , a ba lance between the s t r e s s o r s exper i enced and the f a m i l y ' s use of the re sources to deal wi th these s t r e s s o r s i s needed to m a i n t a i n the w e l l - b e i n g of the f a m i l y . R e c o g n i z i n g t h a t the f a m i l y wi th COPD i s c o n f r o n t e d with an i n t e n s e s t r e s s o r , the f a m i l y w i l l need s u f f i c i e n t re sources to cope i n a way t h a t ma in ta in s the e f f e c t i v e f u n c t i o n i n g of the f a m i l y u n i t . The f o l l o w i n g s e c t i o n , t h e r e f o r e , addresses the i n s i g h t the f i n d i n g s p rov ide i n t o the impact of COPD on the f a m i l y ' s a b i l i t y to use i t s r e source s e f f e c t i v e l y to manage the s t r e s s a s s o c i a t e d with COPD. 107 Impact of COPD on F a m i l y ' s Resources The r e sea rch f i n d i n g s not only i n d i c a t e t h a t COPD acts as an i n t e n s e s t r e s s o r f o r f a m i l i e s , but a l so t h a t COPD i n h i b i t s the f a m i l i e s ' r e source s to deal wi th the demands of t h i s s t r e s s o r . As e x p l a i n e d e a r l i e r i n the c h a p t e r , the re sources of the f a m i l y to deal wi th s t r e s s o r s are v i t a l de terminants i n the e f f e c t the s t r e s s o r s have upon f a m i l y f u n c t i o n i n g . I n s i g h t i n t o how COPD i n f l u e n c e s f a m i l y r e s o u r c e s , t h e r e f o r e , p r o v i d e s important i n f o r m a t i o n to enable nurses to s t rengthen and develop the re sources of f a m i l i e s cop ing wi th COPD. As a s o c i a l u n i t , the f a m i l y ' s r e source s can be seen to be drawn from two s o u r c e s : the i n t e r a c t i o n of the members w i t h i n the f a m i l y , and the i n t e r a c t i o n of the f a m i l y with i t s e x t e r n a l environment (Fr iedman, 1981) . The f o l l o w i n g s e c t i o n s examine the f i n d i n g s t h a t o f f e r i n s i g h t i n t o how COPD a f f e c t s each of these s o u r c e s . I n t e r n a l Fami ly Resources The i n n e r s t r e n g t h of the f a m i l y i s seen to l i e i n i t s a b i l i t y to p u l l t o g e t h e r i n t o a c o h e s i v e , i n t e g r a t e d u n i t and draw upon i t s c o l l e c t i v e a b i l i t y to deal wi th s t r e s s (Fr iedman, 1981) . The f i n d i n g s i n d i c a t e t h a t COPD erodes t h i s i n n e r re source by f o s t e r i n g the i s o l a t i o n of members w i t h i n the f a m i l y from one a n o t h e r . T h i s was i n d i c a t e d i n r e l a t i o n to two major a r e a s . 108 F i r s t , i t was found t h a t the e x p r e s s i o n of i n t e n s e emotions were r e s t r i c t e d i n the f a m i l i e s as a means of p r e v e n t i n g emot ion- induced b r e a t h l e s s n e s s of the COPD member. T h i s f i n d i n g supports o ther s t u d i e s t h a t have i d e n t i f i e d t h a t a narrow range of emotion i s t o l e r a t e d by the i n d i v i d u a l wi th COPD. Dud ley , G l a s e r , Jorgenson & Logan (1980) d e s c r i b e d the i n d i v i d u a l wi th COPD as l i v i n g w i t h i n an emotional s t r a i g h t j a c k e t i n an attempt to c o n t r o l b r e a t h l e s s n e s s . A l s o , Sexton (1984) r e p o r t e d tha t wives of men with COPD tend to c o n t r o l the e x p r e s s i o n of s t rong f e e l i n g s to avo id p r e c i p i t a t i n g ep i sodes of shor tnes s of brea th f o r t h e i r husbands. A p p a r e n t l y t h i s emotional s t r a i g h t j a c k e t i s not j u s t l i m i t e d to the i l l i n d i v i d u a l s or the w i v e s , but can a p p a r e n t l y envelop the e n t i r e f a m i l y . I t i s the r e c o g n i t i o n of the d i v i s i v e r e s u l t of the emotional r e s t r i c t i o n t h a t has r a m i f i c a t i o n s f o r the f a m i l y ' s a b i l i t y to cope with the s t r e s s of COPD. For t h i s behav iour can wedge members a p a r t . M e a n i n g f u l , c l e a r communication i s seen to be the key element i n f u l f i l l i n g f a m i l y f u n c t i o n s , and bonding the f a m i l y toge ther (Fr iedman, 1981) . R e s t r i c t i o n s on open communication between members i n s u l a t e s the members from one another which i n h i b i t s the p o t e n t i a l r e source of s t rong bonds w i t h i n the f a m i l y . The f i n d i n g t h a t under s t and ing between f a m i l y members reduced the i s o l a t i o n e x p e r i e n c e d between members w i t h i n the f a m i l y lends support to the t h e o r e t i c a l p e r s p e c t i v e t h a t c l e a r communication b u i l d s the s t r e n g t h of the f a m i l y to deal wi th 109 s t r e s s . A p a r t i c i p a n t f a m i l y ' s exper i ence wi th r o l e a l t e r a t i o n s e x e m p l i f i e d the he ightened degree of s t r e s s on f a m i l y bonds t h a t occurs when mutual under s t and ing i s not ach ieved w i t h i n the f a m i l y . Here , t e n s i o n was e v i d e n t as the f a m i l y members r e s i s t e d needed r o l e s h i f t s . I t seemed t h a t there were u n c l e a r e x p e c t a t i o n s on what were a p p r o p r i a t e e x p e c t a t i o n s of the i l l member now t h a t her a b i l i t i e s had changed, and i n t u r n , u n c l e a r e x p e c t a t i o n s of the r o l e s of o t h e r s . Rather than r e s i s t a n c e to r o l e changes per se , B i s h o p , E p s t e i n and Baldwin (1981) propose t h a t i t i s the ambigui ty of the need f o r the r o l e changes t h a t c r e a t e s s t r e s s f o r f a m i l i e s with c h r o n i c i l l n e s s . The f i n d i n g s of t h i s study support t h i s v iew. I t appeared to be the u n c l e a r communications between members and l a ck of mutual under s t and ing of the need f o r change w i t h i n the f a m i l y t h a t promoted the t e n s i o n i n r e l a t i o n to r o l e a l t e r a t i o n s , not the assumption of the r o l e tasks themse lve s . As r e f l e c t e d by t h i s f i n d i n g , under s t and ing between members, whether ach ieved through verba l communication or n o t , supports the f a m i l y ' s a b i l i t y to make changes i n f a m i l i a r p a t t e r n s i n a way t h a t ma in ta in s s t rong bonds between members. The second f i n d i n g which r e v e a l e d the i n h i b i t o r y i n f l u e n c e of COPD on the f a m i l y ' s i n n e r re sources was t h a t the f a m i l y ' s a b i l i t i e s to p a r t i c i p a t e i n shared a c t i v i t i e s were d i m i n i s h e d . The energy l i m i t a t i o n of the f a m i l y u n i t was found to d e l e t e many k inds of f a m i l y a c t i v i t i e s , from f a m i l y d inner s to f a m i l y h o l i d a y s . Many s i t u a t i o n s had to be avo ided as they became 110 viewed as b r e a t h e r - h o s t i l e or energy-consuming . The i n f l u e n c e of the i l l n e s s of the i l l member set h im/her apar t from the l i f e s t y l e the wel l members were capable of c o n t i n u i n g . A g a i n , these c o n s t r a i n t s were found to c r e a t e a wedge between the members. Thus , the u n i t y w i t h i n the f a m i l y was e roded , and the s t r e n g t h of the i n n e r r e source s to cope wi th the demands of l i v i n g with COPD i n h i b i t e d . A f i n d i n g t h a t i s thought p rovok ing and demands f u r t h e r e x p l o r a t i o n , r e l a t e s to c h a r a c t e r i s t i c s of the p a r t i c i p a n t f a m i l i e s t h a t agreed to the f a m i l y i n t e r v i e w . The m a j o r i t y of the f a m i l i e s were found to be commited to the f a m i l y group and d i d not exper i ence problems i n r e l a t i o n to r o l e a l t e r a t i o n s . T h e o r i s t s have d e s c r i b e d these to be two important c h a r a c t i s t i c s tha t s t r eng then the i n n e r re sources of f a m i l i e s to deal e f f e c t i v e l y wi th t h r e a t s . That these were found to be c h a r a c t e r s i t i c s of t h i s group may i n d i c a t e t h a t these f a m i l i e s are " s u r v i v o r s " or " s u c c e s s f u l c o p e r s . " They have been able to deal e f f e c t i v e l y wi th the s t r e s s o r of COPD and m a i n t a i n the f u n c t i o n i n g of the f a m i l y at a l e v e l t h a t enabled them to p a r t i c i p a t e i n a forum where open s h a r i n g among the members was an e x p e c t a t i o n . Given the r e s t r i c t i o n on the e x p r e s s i o n of emotional i s s u e s , the agreement to p a r t i c i p a t e i n t h i s group process i s even more sugges t ive of t h e i r a b i l i t y to cope e f f e c t i v e l y with the demands of COPD. Perhaps some of the f a m i l i e s who chose not to be i n v o l v e d i n the study had not ma in ta ined a l e v e l of a d a p t a t i o n to l i f e wi th COPD t h a t would enable them to cope wi th the a d d i t i o n a l s t r e s s o r c r e a t e d by the I l l group i n t e r v i e w . E x t e r n a l Fami ly Resources The importance of examining the f i n d i n g s t h a t i n d i c a t e the i n f l u e n c e of COPD upon the f a m i l y ' s e x t e r n a l r e source s i s based upon a view of the f a m i l y as par t of a l a r g e r s o c i e t a l system. As such , the f a m i l y r e q u i r e s i n t e r a c t i o n with those o u t s i d e the f a m i l y to f u n c t i o n . The f a m i l y a lone cannot serve a l l the member and group needs (Fr iedman, 1981) . Thus , the f o l l o w i n g s e c t i o n examines the f i n d i n g s tha t i n d i c a t e the i n f l u e n c e of COPD upon the f a m i l y ' s e x t e r n a l r e s o u r c e s . The r e s e a r c h found t h a t the COPD exper i ence means i s o l a t i o n f o r the f a m i l y group from o t h e r s . T h i s f i n d i n g i s one t h a t c o u l d have been a n t i c i p a t e d from the c u r r e n t theory base . Other t h e o r i s t s and r e s e a r c h e r s have d e s c r i b e d a l o s s of s o c i a l c o n t a c t , tha t can extend to great s o c i a l i s o l a t i o n , t h a t i s a l i k e l y consequence of c h r o n i c d i sea se ( M a c V i c a r , 1980; Maurin & Schenkel , 1 975 ; S t raus s et a l , 1 984) . These authors propose t h a t i s o l a t i o n develops as f a m i l i e s with c h r o n i c i l l n e s s withdraw from o ther s i n t o a very f a m i l y - i f not p a t i e n t - cen te red e x i s t e n c e , and as those i n t h e i r s o c i a l wor ld withdraw from the f a m i l i e s . T h i s s t u d y ' s f i n d i n g s support t h i s p r o p o s i t i o n . However, the s i g n i f i c a n c e of f i n d i n g t h a t the f a m i l y wi th COPD exper i ence s i s o l a t i o n l i e s not i n t h i s congruence wi th the l i t e r a t u r e , but i n under s t and ing what the i s o l a t i o n then means fo r the f a m i l y . That which i s seen to hold the g r e a t e s t s i g n i f i c a n c e f o r the w e l l - b e i n g of the f a m i l y u n i t p r o v i d e s the focus of the remainder of the d i s c u s s i o n : the COPD f a m i l y ' s i s o l a t i o n from e x t e r n a l r e s o u r c e s . The f i n d i n g s i n d i c a t e tha t the f a m i l y i s i s o l a t e d from the support p r o v i d e d by f r i e n d s h i p networks , community o r g a n i z a t i o n s , and even h e a l t h care workers to cope with the demands of COPD on f a m i l y l i f e . Thus , as was e v i d e n t i n the f a m i l i e s ' a c c o u n t s , the sense of cop ing a lone wi th the i l l n e s s d e v e l o p s . Access to e x t e r n a l r e source s has been r e c o g n i z e d as a powerful s u p p o r t i v e f o r c e i n the management and r e s o l u t i o n of the s t r e s s a s s o c i a t e d wi th i l l n e s s (Cobb, 1976; Dimond & Jones , 1983b; Norbeck, 1981) . Caplan (1974) i d e n t i f i e d three pr imary e x t e r n a l r e sources of the f a m i l y : in formal networks , community o r g a n i z a t i o n a l s u p p o r t , and o r g a n i z e d h e a l t h care s u p p o r t . The i n s i g h t the f i n d i n g s p r o v i d e about the impact of COPD on each of these areas of support i s addre s sed . L i v i n g with COPD was found to i n h i b i t the f a m i l y ' s access to the support of in forma l networks . As the d i sea se p r o g r e s s e s , the COPD f a m i l y ' s c o n t a c t s wi th f r i e n d s and acqua intances d e c r e a s e . C o n s e q u e n t l y , the f a m i l y tends to become i s o l a t e d from those o u t s i d e the f a m i l y group. Statements by the f a m i l i e s t h a t no one unders tood what i t meant to l i v e wi th COPD and t h a t they knew of few o ther s cop ing with t h i s same i l l n e s s demonstrated t h a t the COPD f a m i l i e s were i s o l a t e d from a network of common-concern r e l a t i o n s h i p s . R e l a t i o n s h i p s t h a t Weiss i n d i c a t e s permit " the development of pooled i n f o r m a t i o n and i d e a s , and a shared i n t e r p r e t a t i o n of 113 e x p e r i e n c e , . . . a source of companionship and o p p o r t u n i t i e s fo r exchange of s e r v i c e s " (1974, p . 2 3 ) . Having few in formal r e l a t i o n s h i p s impedes the access of the f a m i l y to i n f o r m a t i o n t h a t would help i t develop e f f e c t i v e cop ing s t r a t e g i e s . A l l members of a f a m i l y group have b a s i c a l l y the same i n f o r m a t i o n . "Weak t i e s , " in forma l r e l a t i o n s h i p s o u t s i d e the f a m i l y , are the " channe l s through which i d e a s , i n f l u e n c e s , or i n f o r m a t i o n " i s a c q u i r e d ( G r a n o v e t t e r , 1973) . Without the c o n t a c t s wi th in forma l networks i n f o r m a t i o n s h a r i n g i s l i m i t e d , an important source of ideas f o r d e v e l o p i n g cop ing s t r a t e g i e s to deal e f f e c t i v e l y with the demands of the c h r o n i c i l l n e s s i s l o s t ( S t raus s et al . , 1984) . Without t h i s i n p u t from o t h e r s , r e sources t h a t f a c i l i t a t e the a b i l i t y of the f a m i l y to cope are i n h i b i t e d . Without these r e l a t i o n s h i p s , impor tant sources of feedback are a l so l a c k i n g . For example, the f a m i l i e s do not access knowledge t h a t t h e i r exper i ences wi th COPD are not u n i q u e , but common to those i n s i t u a t i o n s such as there own. Shar ing wi th o ther s f o s t e r s a sense of commonality of exper ience which reduces the sense of i s o l a t i o n (Bloom, 1982) . R e c e i v i n g t h i s type of v a l i d a t i n g feedback from o ther s i s even more important because the f a m i l y with COPD cannot a c q u i r e t h i s i n p u t through other in forma l media , such as l ay l i t e r a t u r e and t e l e v i s o n , as i s p o s s i b l e with o ther d i s e a s e s . There i s not an a c q u i r e d pool of genera l knowledge about the exper ience of l i f e wi th COPD to p r o v i d e a ba s i s fo r i n t e r p r e t i n g t h e i r own e x p e r i e n c e s , which 114 compounds the sense of i s o l a t i o n . The invo lvement of the f a m i l i e s i n o r g a n i z e d community support groups was a l so found to be l a c k i n g . C e r t a i n l y the p o s i t i v e e f f e c t of s o c i a l support has been i l l u s t r a t e d i n the ever expanding numbers of s e l f - h e l p groups . I t then seems p e c u l i a r t h a t at a time of movement toward s e l f - h e l p groups and the emphasis on s o c i a l support i n the c u r r e n t l i t e r a t u r e , tha t f a m i l i e s wi th COPD appear to have remained i s o l a t e d . Some reasons f o r t h i s occur rence are o f f e r e d by the r e sea rch f i n d i n g s . The nature of the i l l n e s s i t s e l f appears to c o n t r i b u t e to the i s o l a t i o n from support groups as wel l as from in forma l sources of s u p p o r t . In the f i r s t p l a c e , the onset of the symptoms of COPD are i n s i d i o u s , as i s the gradual c o n t r o l i t takes of f a m i l y l i f e . Given t h i s , there i s no s i n g l e event tha t s i g n a l s to o ther s t h a t the f a m i l y i s e x p e r i e n c i n g a s t r e s s f u l time and thus r e q u i r e s s u p p o r t . Indeed, there does not even seem to be a s i g n a l to the f a m i l y i t s e l f tha t t h i s i s the r i g h t time to seek out s u p p o r t . T h i s seems to wai t u n t i l the f a m i l y exper i ence s a c r i s i s . An i n t e r e s t i n g f i n d i n g t h a t may r e f l e c t t h i s l a ck of a s i g n a l was the minimal involvement of the a d u l t c h i l d r e n i n the i l l n e s s exper ience of f i v e of the e i g h t p a r t i c i p a n t f a m i l i e s . T h i s o c c u r r e d even though these c h i l d r e n l i v e d c l o s e to t h e i r p a r e n t s . That some s o r t of s i g n a l i s needed to i n d i c a t e to these c h i l d r e n t h a t they should become more i n t i m a t e l y i n v o l v e d i n t h e i r parents l i v e s seems i l l u s t r a t e d by the f a c t t h a t the three p a r t i c i p a n t f a m i l i e s 115 with i n v o l v e d c h i l d r e n had e x p e r i e n c e d a l i f e - t h r e a t e n i n g e v e n t , such as an i n t e n s i v e care a d m i s s i o n . T h i s event may have p r o v i d e d the s i g n a l to the c h i l d r e n to become or stay c l o s e l y i n v o l v e d . S e c o n d l y , the d i a g n o s i s of COPD, i t s e l f , d i d not produce in tense emotional responses w i t h i n the f a m i l i e s , as occurs with the d i a g n o s i s of o ther d i s e a s e s , such as cancer or a hear t a t t a c k . The f a m i l i e s d i d not dwell on q u e s t i o n i n g the occurrence of the d i sea se or even d i s c u s s the d i a g n o s i s . I t seems tha t the i l l members' d e c r e a s i n g c a p a b i l i t i e s and smoking h a b i t s had p r o v i d e d ongoing c l u e s t h a t enabled the f a m i l i e s to conclude t h a t t h e i r members had lung d i sea se before i t was f o r m a l l y d i agnosed . Whereas i n the case of o ther d i s e a s e s , d i a g n o s i s p r e c i p i t a t e s support from o t h e r s , t h i s was not found to be the case fo r the i n d i v i d u a l with COPD and h i s / h e r f a m i l y . Fur thermore , the d i sea se i t s e l f does not s t i m u l a t e empathic responses from o t h e r s . The f e e l i n g s expressed by the f a m i l i e s t h a t the i l l n e s s has been s e l f - i n d u c e d can be assumed to a l s o be a p r e v a l e n t view of those o u t s i d e the f a m i l y . Thus , the impetus fo r o ther s to p rov ide support i s i n h i b i t e d . S i m i l i a r l y , the view t h a t " i t i s my own f a u l t " i n h i b i t s the f a m i l y from seek ing s u p p o r t . The f a m i l i e s ' minimal s u p p o r t - s e e k i n g behav iours a l so r e f l e c t an a t t i t u d e t h a t was s u b t l y p r o j e c t e d i n the i n t e r v i e w s : " i t i s something we have brought on o u r s e l v e s , we should deal wi th i t o u r s e l v e s . " Another reason t h a t s e l f - h e l p groups have not been popular 116 for i n d i v i d u a l s with COPD and t h e i r f a m i l i e s r e l a t e s to f i n d i n g t h a t the e n t i r e f a m i l y f u n c t i o n s w i t h i n an energy-economy. G e t t i n g out to a t t end support groups t h a t may e x i s t i s energy consuming. The f a m i l i e s who have the g r e a t e s t energy r e s t r i c t i o n , and t h e r e f o r e probab ly exper ience the g r e a t e s t i s o l a t i o n , appear to be the groups t h a t would need t h i s type of support the most, but they a l s o would be the l e a s t l i k e l y to be able to a t t e n d . The energy consumed i n g e t t i n g out to a t t end the group may be seen to counter the b e n e f i t t h a t would be g a i n e d . S i m i l i a r l y , the energy i n v o l v e d i n e s t a b l i s h i n g a peer support group may be c o n s i d e r e d too grea t an expense. A f i n d i n g tha t demands s e r i o u s a t t e n t i o n i s t h a t the i s o l a t i o n exper i ence was a l so found to be p o t e n t i a t e d by the f a m i l i e s ' i n t e r a c t i o n s wi th the h e a l t h care d e l i v e r y system. One source of i s o l a t i o n was found to be t h e i r i n d i v i d u a l l y -focused i n t e r a c t i o n s wi th h e a l t h care w o r k e r s . Al though the f i n d i n g s i n d i c a t e t h a t COPD i s a f a m i l y e x p e r i e n c e , the f a m i l y r a r e l y was viewed as a focus fo r c a r e . On the c o n t r a r y , the f a m i l i e s i n d i c a t e d t h a t t h e i r invo lvement i n the i l l n e s s exper ience was i n many cases " p o l i t e l y i g n o r e d . " Ransom (1983) e x p l a i n s t h a t there are three d i f f e r e n t views of the f a m i l y t h a t d i r e c t c a r e . The f a m i l y i s viewed as : a c o l l e c t i o n of i n d i v i d u a l s where care i s g iven to each i n d i v i d u a l i n the f a m i l y as needed; an environment where a change i n the s t a t e of an i n d i v i d u a l ' s h e a l t h i s attempted by changing the environment i n the f a m i l y ; and, a f u n c t i o n i n g u n i t where the focus of i n t e r v e n t i o n i s the f a m i l y group. The 117 f i n d i n g s of t h i s r e sea rch i n d i c a t e t h a t the f a m i l y with COPD has needs tha t cannot be met through care d i r e c t e d s o l e l y toward the i l l f a m i l y member. S i m i l a r i l y , there are needs l e f t unattended when the f a m i l y i s viewed only as pa r t of the env i ronment . I n t e r v e n t i o n s must focus on the f a m i l y as a u n i t of c a r e . Al though most of the i n d i v i d u a l - o r i e n t e d i n t e r a c t i o n s c i t e d by the f a m i l i e s were i n r e l a t i o n to p h y s i c i a n s , there was a l so a n o t i c a b l e absence of r e f e r e n c e to a more f a m i l y - f o c u s e d o r i e n t a t i o n by the nurses i n v o l v e d i n t h e i r c a r e . Al though n u r s i n g t h e o r i s t s have been advoca t ing a f a m i l y - f o c u s e d p e r s p e c t i v e f o r n u r s i n g (Fr iedman, 1981; L e a v i t t , 1982; Wright & Leahey, 1984) , and the f i n d i n g s of t h i s r e search support t h i s need, i t appears t h a t the view of the f a m i l y as c l i e n t has not y e t w i d e l y f i l t e r e d i n t o p r a c t i c e . The f i n d i n g s i n d i c a t e t h a t one r e s u l t of t h i s l a ck of f a m i l y - f o c u s e d h e a l t h care i s t h a t the f a m i l i e s ' needs f o r i n f o r m a t i o n and support go unaddres sed . Al though the l i t e r a t u r e acknowledges tha t managing c h r o n i c i l l n e s s i s a task of the f a m i l y u n i t ( G r i f f i n , 1980) , and the f i n d i n g s of t h i s r e search support t h i s r e a l i t y , the a b i l i t y of h e a l t h care workers to a s s i s t the COPD f a m i l y i n t h i s task may not be w i d e - s p r e a d . I t seems there i s a gap between the h e a l t h care worker s ' p e r s p e c t i v e of the i l l n e s s exper ience and the r e a l i t y tha t COPD i s a f a m i l y e x p e r i e n c e . The m a j o r i t y of n u r s i n g i n t e r v e n t i o n s wi th f a m i l i e s wi th COPD now appear to predominant ly focus on t e a c h i n g the f a m i l y about the t reatment 118 regime to ensure the environment i s conduc ive to s u p p o r t i n g the i l l member. Al though t h i s focus i s i m p o r t a n t , i t cannot be at the expense of the needs of the f a m i l i e s to cope wi th the tasks of everyday l i v i n g . The f a m i l i e s expressed the need f o r i n f o r m a t i o n i n r e l a t i o n to the t r a j e c t o r y of the i l l n e s s and the management of the i l l n e s s . But , i t was i n d i c a t e d t h a t the i n f o r m a t i o n the f a m i l i e s r e c e i v e d was minimal and i n a d e q u a t e , p a r t i c u l a r l y the i n f o r m a t i o n t h a t would enable them to prepare f o r the f u t u r e . M i l l e r (1980) d e s c r i b e s a n t i c i p a t o r y p l a n n i n g as an i n t e g r a l p a r t of l i v i n g wi th a c h r o n i c i l l n e s s . She s t a t e s t h a t f a m i l i e s need to be t o l d of s p e c i f i c problems they may c o n c e i v a b l y face and be helped to e x p l o r e ways i n which these may be h a n d l e d . F i n d i n g t h a t an u n c e r t a i n fu ture pre sent s a pr imary c h a l l e n g e to these f a m i l i e s even more c l e a r l y i n d i c a t e s t h a t n u r s i n g i n t e r v e n t i o n s t h a t a i d the f a m i l y i n a n t i c i p a t o r y cop ing are needed. The emphasis the f a m i l i e s p l a c e d on i n f o r m a t i o n may a l s o be an e x p r e s s i o n of the need f o r support to cope wi th the d a i l y s t r e s s of l i v i n g wi th COPD. Cohen and Lazarus (1979) i n d i c a t e d t h a t the nature of the process of the f a m i l y ' s i n t e r a c t i o n wi th those i n the h e a l t h care f i e l d may be more impor tant to the f a m i l i e s than the r e c e i p t of the i n f o r m a t i o n . Given t h a t the f a m i l i e s wi th COPD p e r c e i v e d t h a t o ther s d i d not unders tand t h e i r e x p e r i e n c e , i t f o l l o w s t h a t the emphasis the f a m i l i e s p l a c e d on the l ack of i n f o r m a t i o n r e c e i v e d from h e a l t h care workers may i n f a c t r e f l e c t t h e i r sense of a l ack 119 of s u p p o r t . A major reason f o r o f f e r i n g i n f o r m a t i o n to the f a m i l y , t h e r e f o r e , may be to communicate t h a t support i s a v a i l a b l e to help them deal wi th the c h a l l e n g e s of l i v i n g wi th COPD. The f i n d i n g s a l s o suggest t h a t because the h e a l t h care d e l i v e r y system i s so acute care o r i e n t e d , the f a m i l i e s f ee l l i m i t e d support f o r t h e i r c h r o n i c , l ong- te rm needs . A s s i s t a n c e from h e a l t h care workers was found to be p r i m a r i l y r e l a t e d to acute e x a c e r b a t i o n s of the i l l n e s s , such as d u r i n g emergency s e r v i c e s . The f a m i l i e s may have i n tu rn come to see these as the on ly l e g i t i m a t e concerns fo r which they c o u l d seek h e l p . The view of the h e a l t h care system as only a p p r o p r i a t e f o r c r i s i s , " d i s e a s e " problems , i s not s u r p r i s i n g , f o r t h i s has been the t r a d i t i o n a l o r i e n t a t i o n of the Canadian h e a l t h care system ( T o r r a n c e , 1981) . That the f a m i l i e s d e s c r i b e d t h e i r needs p r i m a r i l y i n r e l a t i o n to cop ing with- the problems of c h r o n i c i t y emphasizes the importance of e n s u r i n g the h e a l t h care d e l i v e r y system p r o v i d e s s e r v i c e s o r i e n t e d toward c l i e n t s l i v i n g wi th l o n g - t e r m i l l n e s s . There must be t a n g i b l e support f o r nurses to ac t i n t h i s c a p a c i t y so f a m i l i e s do not c o n t i n u e to "drop through the c r a c k s " of the h e a l t h care sys tem. From t h i s d i s c u s s i o n of the f i n d i n g s , i t i s argued t h a t COPD c r e a t e s a powerful s t r e s s o r w i t h i n f a m i l y l i f e , w h i l e at the same time i t ac t s to i n h i b i t the f a m i l y ' s r e sources to deal wi th these demands. The f o l l o w i n g s e c t i o n i d e n t i f i e s the i m p l i c a t i o n s these f i n d i n g s ho ld f o r n u r s i n g p r a c t i c e . 120 Nurs ing I m p l i c a t i o n s What i s d a i l y l i f e l i k e f o r the f a m i l y i n which an a d u l t member has COPD? How do f a m i l i e s respond to the demands of the i l l n e s s ? The f i n d i n g s i n r e l a t i o n to these r e sea rch q u e s t i o n s have i m p l i c a t i o n s f o r n u r s i n g . I m p l i c a t i o n s are presented i n r e l a t i o n to two a rea s : n u r s i n g p r a c t i c e , and n u r s i n g r e s e a r c h . I m p l i c a t i o n s f o r n u r s i n g e d u c a t i o n are seen to stem from the i m p l i c a t i o n s fo r p r a c t i c e and t h e r e f o r e are not s p e c i f i e d i n t h i s p r e s e n t a t i o n . I m p l i c a t i o n s f o r Nurs ing P r a c t i c e The phenomenological d e s c r i p t i o n of the f a m i l y exper ience when an a d u l t member has COPD p r o v i d e s an indepth under s t and ing of t h i s e x p e r i e n c e . Knowledge of the type of s t r e s s COPD c r e a t e s f o r the f a m i l y and the p o t e n t i a l f a m i l y problems t h a t a r i s e c o n t r i b u t e s to the t h e o r e t i c a l base nurses can use to p rov ide a p p r o p r i a t e and e f f e c t i v e care f o r f a m i l i e s l i v i n g wi th COPD. The f i n d i n g s p r o v i d e s p e c i f i c 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 toward d e c r e a s i n g the s t r e n g t h of the s t r e s s o r exer ted by COPD and i n c r e a s i n g the f a m i l y ' s r e sources to deal wi th t h i s s t r e s s o r i n a way t h a t ma in ta in s the w e l l - b e i n g of the f a m i l y u n i t . The i m p l i c a t i o n s f o r n u r s i n g p r a c t i c e are i d e n t i f i e d i n r e l a t i o n to these two f o c i . D e c r e a s i n g the s t r e n g t h of the s t r e s s o r exer ted by COPD. F i n d i n g t h a t the f a m i l i e s exper i ence p e r v a s i v e changes and l o s s e s as a r e s u l t of accommodating the demands of COPD and s u p p o r t i n g the i l l member i n d i c a t e s tha t nurses should promote f a m i l y behav iours tha t w i l l enhance the r e s o l u t i o n of the l o s s e s . The e x p r e s s i o n of the f e e l i n g s evoked by a l o s s are known to be necessary fo r i t s r e s o l u t i o n (Bowlby & Parkes , 1970). Thus , nurses should p r o v i d e o p p o r t u n i t i e s f o r the f a m i l y or members w i t h i n the f a m i l y to share t h e i r f e e l i n g s about the e x p e r i e n c e , l i s t e n and accept the f a m i l y members' e x p r e s s i o n s of g r i e f , and v a l i d a t e t h a t the members' f e e l i n g s in r e l a t i o n to the l o s s are normal r e sponse s . I f a f a m i l y r e t a i n s few r e l a t i o n s h i p s o u t s i d e of the f a m i l y , and a l s o becomes used to c o n t r o l l i n g the e x p r e s s i o n of emotion w i t h i n the f a m i l y , the e x p r e s s i o n of g r i e f i s l i k e l y to be hampered; t h u s , o u t s i d e a s s i s t a n c e may be even more s t r o n g l y needed. F i n d i n g t h a t managing the i l l n e s s pre sent s a pr imary c h a l l e n g e to the f a m i l y i n d i c a t e s t h a t n u r s i n g care should be d i r e c t e d toward s t r e n g t h e n i n g the f a m i l y ' s a b i l i t y to meet t h i s demand. As the l i m i t a t i o n s of the i l l member were found to become l i m i t a t i o n s of the e n t i r e f a m i l y , n u r s i n g i n t e r v e n t i o n s toward m i n i m i z i n g the l i m i t a t i o n s of the i l l member can be seen to meet both the needs of the i n d i v i d u a l and the f a m i l y . Thus , the importance of n u r s i n g care toward the i n d i v i d u a l ' s r e h a b i l i t a t i o n i s emphasized. F i n d i n g t h a t the u n c e r t a i n t y of the fu ture c r e a t e d s t r e s s w i t h i n the f a m i l y , n u r s i n g care shou ld i n c l u d e f o s t e r i n g the process of a n t i c i p a t o r y cop ing w i t h i n the f a m i l y . The f i n d i n g s i n d i c a t e t h a t t h i s should i n v o l v e p r o v i d i n g i n f o r m a t i o n about s p e c i f i c problems the f a m i l y may c o n c e i v a b l y face and an o p p o r t u n i t y to exp lo re p o s s i b l e ways t h a t these problems may be handl e d . As l i v i n g with COPD was found to e x e r t a powerful s t r e s s o r w i t h i n the f a m i l y , h e l p i n g the f a m i l i e s to l e a r n how to r e c o g n i z e the l e v e l of the s t r e s s w i t h i n the f a m i l y and to develop p o s i t i v e s t r a t e g i e s to r e l e a s e t h i s s t r e s s i s a l s o i ndi c a t e d . S t r e n g t h e n i n g the f a m i l y ' s r e source s to deal wi th COPD. R e c o g n i t i o n of the d i v i s i v e i n f l u e n c e COPD can e x e r t w i t h i n the f a m i l y , i n d i c a t e s t h a t n u r s i n g a c t i o n should be d i r e c t e d toward f o s t e r i n g the cohes ion w i t h i n the f a m i l y . The f a m i l i e s ' comments t h a t they b e n e f i t e d from the i n t e r v i e w p r o c e s s , even though most had never before d i s c u s s e d the impact of the i l l n e s s on t h e i r f a m i l y l i f e , and f i n d i n g t h a t the members were ab le to share t h e i r thoughts and f e e l i n g s w i t h i n the group s e t t i n g suggests t h a t f a m i l i e s may b e n e f i t from nurses promoting and f a c i l i t a t i n g f a m i l y group d i s c u s s i o n s . These would p r o v i d e an o p p o r t u n i t y to enhance the s h a r i n g among members. The f i n d i n g s i n d i c a t e t h a t the use of emotional r e s t r i c t i o n w i t h i n a f a m i l y should be assessed to see how t h i s cop ing s t r a t e g y i s a f f e c t i n g the f a m i l y . I n t e r v e n t i o n s to decrease s e p a r a t i o n between members c o u l d then be i n i t i a t e d , i f a p p r o p r i a t e . Unders tanding t h a t the e x p r e s s i o n of emotion i s of ten r e s t r i c t e d i n these f a m i l i e s , and t h a t r e l a t i o n s h i p s o u t s i d e the f a m i l y may be l i m i t e d , i n d i c a t e s tha t the f a m i l i e s may a l s o need a s s i s t a n c e to develop hea l thy avenues f o r the r e l e a s e of these f e e l i n g s . As mutual under s t and ing of the l i m i t a t i o n s of the i l l n e s s and r e a l i s t i c e x p e c t a t i o n s of members f o r each o ther were found to enhance f a m i l y c o h e s i o n , n u r s i n g i n t e r v e n t i o n s shou ld be o r i e n t e d toward f a c i l i t a t i n g mutual under s t and ing w i t h i n the f a m i l y . T h i s c o u l d i n v o l v e such n u r s i n g i n t e r v e n t i o n s as the p r o v i s i o n of i n f o r m a t i o n about the l i m i t a t i o n s common to i n d i v i d u a l s wi th COPD and the needs of the i l l member, to ensure a l l members have a b a s i c under s t and ing of the d i s e a s e . The i l l member would then not need to c o n t i n u a l l y j u s t i f y h i s / h e r l i m i t a t i o n s to the f a m i l y . I n i t i a t i n g o p p o r t u n i t i e s fo r s evera l f a m i l i e s to i n t e r a c t would a l s o p rov ide a forum f o r f a m i l y members to l e a r n about the needs of the i l l member. T h i s a l so would p rov ide an o p p o r t u n i t y f o r s h a r i n g ways each f a m i l y has handled problems t h a t have emerged when l i v i n g wi th COPD. J o i n t i n f o r m a t i o n s e s s i o n s between f a m i l i e s c o u l d a l s o be a r r a n g e d , where the nurse b a s i c a l l y ac t s as a mediator to f a c i l i t a t e the s h a r i n g i n the group. F i n d i n g t h a t f a m i l i e s wi th COPD r e c e i v e l i t t l e support from f r i e n d s , o ther k i n , and community o r g a n i z a t i o n s i n d i c a t e s tha t nurses should become more i n v o l v e d i n f o s t e r i n g common-concern networks . Because of the energy l i m i t a t i o n s of these f a m i l i e s , energy c o n s c i o u s types of s u p p o r t i v e s t r a t e g i e s are i n d i c a t e d . For example, as te lephone c o n t a c t i s energy 124 e f f i c i e n t , networking between COPD f a m i l i e s c o u l d be f a c i l i t a t e d by nurses who l i n k the f a m i l i e s by t e l e p h o n e . The f i n d i n g s demonstrate the need f o r nurses to view the f a m i l y with COPD as a focus f o r h e a l t h c a r e . Not only i s t h i s i n d i c a t e d because the f a m i l i e s were found to have needs t h a t are not addressed through care o r i e n t e d s o l e l y toward the i l l members, but because these i n d i v i d u a l - f o c u s e d i n t e r a c t i o n s were found to i s o l a t e the f a m i l i e s from what should be an a c c e s s i b l e source of s u p p o r t . F u r t h e r m o r e , r a t h e r than wai t f o r f a m i l i e s to e n l i s t a s s i s t a n c e when near c r i s i s or i n c r i s i s , the f i n d i n g s suggest tha t nurses should reach out to these f a m i l i e s . I f on ly p h y s i c a l problems are seen as a p p r o p r i a t e reasons to seek a s s i s t a n c e , the f a m i l i e s may not know who to ask f o r h e l p , or they may be unsure of what type of he lp i t i s tha t they need. I t a l so appeared from the f i n d i n g s t h a t the f a m i l i e s d i d not unders tand what s e r v i c e s they c o u l d a c c e s s . T h e r e f o r e , e a r l y c o n t a c t s wi th f a m i l i e s should be used to communicate the v a r i o u s h e a l t h care s e r v i c e s a v a i l a b l e , from r e s p i r a t o r y r e h a b i l i t a t i o n c l i n i c s , to home c a r e , to f a m i l y c o u n s e l l i n g . F a m i l i e s should a l s o be educated as to the need to reques t s e r v i c e s they wish to r e c e i v e , such as to be i n c l u d e d i n h e a l t h care d e c i s i o n s i n r e l a t i o n to the care of the i l l member and f o r a t t e n t i o n to the h e a l t h care needs of the f a m i l y u n i t and/or i n d i v i d u a l members. The s k i l l s nurses have to o f f e r i n h e l p i n g the f a m i l i e s cope wi th COPD should a l so be communicated, f o r example, nur se s ' a b i l i t i e s to a s s i s t 125 f a m i l i e s i n t h e i r p r e p a r a t i o n fo r the f u t u r e , i n l e a r n i n g how to manage the i l l n e s s , and i n m i n i m i z i n g the l i m i t a t i o n the i l l member's COPD exer t s on t h e i r f a m i l y l i f e . I m p l i c a t i o n s f o r Nurs ing Research F u r t h e r i n v e s t i g a t i o n of the f a m i l y exper ience wi th COPD would be use fu l to develop the knowledge base t h a t was generated from t h i s i n v e s t i g a t i o n . G r e a t e r depth of under s tand ing may be gained by i n t e r v i e w s with i n d i v i d u a l f a m i l y members to complement the f a m i l y group i n t e r v i e w . T h i s would enable the i n v e s t i g a t o r to exp lo re the r e l a t i o n s h i p of the i n d i v i d u a l members' exper i ence s to the development of the exper ience of the f a m i l y group. A study of n u r s e s ' p e r c e p t i o n s of the needs of f a m i l i e s with COPD i s a l s o i n d i c a t e d by the r e sea rch f i n d i n g s . Such a study would i n d i c a t e whether nurses l ack an under s t and ing of the COPD f a m i l y ' s needs , or i f these are r e c o g n i z e d but not acted upon, and i f so the b a r r i e r s to t h i s a c t i o n . The knowledge p r o v i d e d by a study of t h i s nature would d i r e c t i n t e r v e n t i o n s aimed toward n u r s i n g e d u c a t i o n and a d m i n i s t r a t i o n to promote a p p r o p r i a t e n u r s i n g care of the f a m i l y with COPD. The f o l l o w i n g q u e s t i o n s have been r a i s e d as a r e s u l t of t h i s i n v e s t i g a t i o n tha t wi th f u r t h e r study would c o n t r i b u t e to knowledge of the f a m i l y exper ience wi th COPD. What f a c t o r s i n f l u e n c e the s u p p o r t - s e e k i n g behav iours of the f a m i l y with COPD? How do f a m i l i e s p e r c e i v e the r o l e of the h e a l t h care system i n meeting t h e i r needs? Is there a c o n s i s t e n t 126 r e l a t i o n s h i p between the p e r c e p t i o n of the l i m i t a t i o n of the i l l member, the l i f e s t y l e changes adopted , and the i s o l a t i o n e x p e r i e n c e d by the f a m i l y u n i t ? What f a c t o r s i n f l u e n c e f a m i l y members who l i v e s e p a r a t e l y from a COPD member to become i n v o l v e d with the i l l n e s s exper ience? Do f a m i l y d i s c u s s i o n s a f f e c t the f a m i l y ' s p e r c e p t i o n of the s t r e s s i t exper i ence s i n l i v i n g wi th COPD? Do j o i n t f a m i l y d i s c u s s i o n s e s s i o n s or te lephone networking a f f e c t the f a m i l y ' s p e r c e p t i o n of i s o l a t i o n and support? Summary C o n s o l i d a t i n g the f i n d i n g s of the s t u d y , t h i s chapter addressed a p i c t u r e of f a m i l y l i f e g r e a t l y s t r u c t u r e d around the d i sea se of the member wi th COPD. The d i s c u s s i o n focused upon the s i g n i f i c a n c e of the f i n d i n g s f o r the w e l l - b e i n g o f the f a m i l y u n i t . F i r s t , the i n s i g h t p r o v i d e d by the r e s e a r c h r e s u l t s i n t o the powerful q u a l i t y of the s t r e s s o r COPD exer t s w i t h i n f a m i l y l i f e was addre s sed . Second, the i n h i b i t o r y i n f l u e n c e of COPD on both the i n t e r n a l and e x t e r n a l r e source s of the f a m i l y was examined. C u r r e n t l i t e r a t u r e t h a t r e l a t e d to the f i n d i n g s p r o v i d e d f u r t h e r e x p l a n a t i o n s of the s i g n i f i c a n c e of the e f f e c t s of COPD on f a m i l y l i f e . F i n a l l y , the va lue of the phenomenological d e s c r i p t i o n f o r n u r s i n g was e v i d e n t as the f i n d i n g s were found to p r o v i d e e x t e n s i v e 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 . In a d d i t i o n , the f i n d i n g s were found to generate s evera l r e sea rch q u e s t i o n s f o r f u r t h e r i n v e s t i g a t i o n of the f a m i l y exper i ence wi th COPD. The next chapter w i l l p r o v i d e a summary of the r e s e a r c h s tudy . CHAPTER SIX Summary and C o n c l u s i o n s Summary T h i s study was des igned to gain an under s t and ing of f ami ly l i f e when an a d u l t member has c h r o n i c o b s t r u c t i v e pulmonary d i s e a s e . From the c u r r e n t t h e o r e t i c a l base , i t i s c l e a r tha t the e f f e c t of COPD on the f a m i l y u n i t g r e a t l y i n f l u e n c e s the i l l n e s s exper ience of the COPD member, the h e a l t h of the o ther f a m i l y members, and the w e l l - b e i n g of the f a m i l y i t s e l f . And y e t , the l i t e r a t u r e o f f e r s l i t t l e knowledge of how COPD a f f e c t s f a m i l y l i f e , knowledge t h a t would enhance the a p p r o p r i a t e and e f f e c t i v e p r o v i s i o n of n u r s i n g care fo r these f a m i l i e s . The a v a i l a b l e l i t e r a t u r e addresses the p e r s p e c t i v e of the i n d i v i d u a l who has COPD or the spouse, but not t h a t of the f a m i l y u n i t . T h i s group p e r s p e c t i v e i s seen e s s e n t i a l i f the f a m i l y ' s exper i ence i s to be u n d e r s t o o d . T h i s v i e w p o i n t i s based upon a symbol ic i n t e r a c t i o n i s t p e r s p e c t i v e , the conceptua l framework which guided t h i s i n v e s t i g a t i o n . From t h i s p e r s p e c t i v e , the i l l n e s s exper i ence of the f a m i l y i s seen to be c r e a t e d through the i n t e r a c t i o n of the f a m i l y members. T o g e t h e r , the members form a c o l l e c t i v e d e f i n i t i o n of t h e i r s i t u a t i o n which serves to shape the f a m i l y ' s b e h a v i o u r . Thus , to unders tand the f a m i l y exper i ence with COPD, the f a m i l y u n i t ' s d e s c r i p t i o n of i t s s i t u a t i o n and a c t i o n s became the focus of t h i s i n v e s t i g a t i o n . To gain an under s t and ing of the meaning of COPD from the 129 p e r s p e c t i v e of the f a m i l y u n i t , an i n t e r p r e t a t i v e r e sea rch approach , phenomenology, was employed. Guided by the conceptua l framework, t h i s approach a l lowed the i n v e s t i g a t o r to to f u l f i l l the purpose of the s t u d y , t h a t i s , to d e s c r i b e and e x p l a i n the f a m i l y exper ience wi th COPD, from the p e r s p e c t i v e of the f a m i l y group. E i g h t f a m i l i e s ac ted as c o - r e s e a r c h e r s i n the i n v e s t i g a t i o n by p a r t i c i p a t i n g i n s e m i - s t r u c t u r e d i n t e r v i e w s . Through the i n t e r v i e w p r o c e s s , the r e s e a r c h e r he lped the f a m i l y c o n s t r u c t an account of i t s e x p e r i e n c e : What the f a m i l y ' s d a i l y l i f e i s l i k e , and how the f a m i l y responds to the demands of the i l l n e s s . Through the data c o l l e c t i o n and conten t a n a l y s i s p r o c e s s , the i n v e s t i g a t o r ga ined an i n t i m a t e under s t and ing of the meaning of COPD f o r the f a m i l y , and t r a n s l a t e d t h i s data i n t o a n a r r a t i v e d e s c r i p t i o n of f a m i l y l i f e wi th COPD. Three i n t e r r e l a t e d themes embody the r e s e a r c h f i n d i n g s : d i s e a s e - d i c t a t e d f a m i l y l i f e , i s o l a t i o n , and f a m i l y work. The f i r s t theme addresses the d i s e a s e - d i c t a t e d changes i n f a m i l y l i f e t h a t were the f o u n d a t i o n of the f a m i l i e s ' a c c o u n t s . The f a m i l i e s r e v e a l e d t h a t p e r v a s i v e changes i n f a m i l y l i f e are necessary i n order to meet the COPD member's needs and accommodate fo r h i s / h e r d i m i n i s h e d c a p a b i l i t i e s . T h i s i n v o l v e s four pr imary aspects of f a m i l y l i f e . F i r s t , i n o rder to avo id b r e a t h l e s s n e s s , f a m i l y l i f e i s c o n f i n e d to b r e a t h e r - p r o t e c t e d env i ronment s . Conforming to t h i s i r r i t a n t - f r e e environment imposes emotional as wel l as p h y s i c a l r e s t r i c t i o n s on the 130 f a m i l y . Second, group l i f e i s c o n s t r a i n e d by the l i m i t e d energy c a p a c i t y of the i l l member. I t i s as though the i l l member's energy-economy p r e s c r i b e s the amount and k ind of a c t i v i t i e s now p o s s i b l e f o r the f a m i l y group. T h i r d , a p r e s e n t - t i m e , "here and now," o r i e n t a t i o n i s imposed by the u n p r e d i c t a b l e and v a r i a b l e d i sea se symptoms and the i n s t a b i l i t y of the i l l member's h e a l t h s t a t u s . F i n a l l y , r o l e a l t e r a t i o n s are an i n t e g r a l pa r t of f a m i l y l i f e . Other f a m i l y members must accommodate and compensate fo r the d i m i n i s h e d a b i 1 i t i e s of the COPD member. F u r t h e r to these l i f e s t y l e changes , the second theme addresses the i s o l a t i o n these f a m i l i e s e x p e r i e n c e . L i v i n g wi th COPD means i s o l a t i n g f o r c e s ac t upon the f a m i l y group. The very l i f e s t y l e changes the f a m i l y adopts to support the i l l member's needs end up i s o l a t i n g the f a m i l y . Attempts to minimize the f a m i l y ' s d i f f e r e n c e s from o t h e r s a l so means i s o l a t i o n from those s i t u a t i o n s where t h i s i s i m p o s s i b l e . As w e l l , a sense t h a t o ther s do not unders tand what i t means f o r the f a m i l y to l i v e wi th COPD c o n t r i b u t e s to the f a m i l y ' s sense of cop ing a lone with a new way of l i f e . A l s o par t of t h i s i s o l a t i o n are f o r c e s t h a t i n s u l a t e members of the f a m i l y u n i t . The gap between the needs and a b i l i t i e s of the COPD member and those of the o ther f a m i l y members i s o l a t e s members from one a n o t h e r . The c o n t r o l of the e x p r e s s i o n of i n t e n s e emotion w i t h i n the f a m i l y i n order to a v o i d emot ion- induced shor tnes s of brea th p o t e n t i a t e s t h i s s e p a r a t i o n . As w e l l , the l i m i t e d degree to which the 131 l i m i t a t i o n s of the i l l member are unders tood and accepted by o ther f a m i l y members o f ten extends the i s o l a t i o n members f ee l from each o t h e r . The f a m i l i e s ' d e s c r i p t i o n s of the f a m i l y work necessary to f i n d a way of l i f e wi th COPD was developed i n t o the t h i r d i n t e r p r e t i v e theme. The f a m i l i e s focused upon four pr imary c h a l l e n g e s . F i r s t , work i s r e q u i r e d to accept the c h r o n i c nature of COPD, t h a t i s , accept the l o s s e s i t means and ad ju s t to the e x t e n s i v e changes r e q u i r e d w i t h i n the f a m i l y . Second, the f a m i l y must l e a r n to l i v e wi th an u n c e r t a i n f u t u r e . I t was d e s c r i b e d as a fu ture t h a t c o u l d ho ld f u r t h e r r e s t r i c t i o n s fo r the f a m i l y u n i t as the i l l n e s s progres se s and e v e n t u a l l y the i l l member's d e a t h . T h i r d , because of the d i s r u p t i v e and d i v i s i v e f o r c e s w i t h i n the f a m i l y f o s t e r e d by the i l l n e s s , f ami ly work i s r e q u i r e d to m a i n t a i n a s a t i s f y i n g shared f a m i l y l i f e . The f a m i l i e s demonstrated t h a t commitment to the f a m i l y u n i t and to m a i n t a i n i n g a va lued p lace fo r the i l l member w i t h i n the f a m i l y c o n t r i b u t e to meeting t h i s c h a l l e n g e . F i n a l l y , managing the i l l n e s s poses an ever p re sent c h a l l e n g e . C o n c l u s i o n s A number of c o n c l u s i o n s can be drawn from the f i n d i n g s of the r e s e a r c h . The most d i s t i n c t of these f i n d i n g s i s t h a t COPD i s indeed a f a m i l y e x p e r i e n c e . The accounts of f a m i l y l i f e wi th COPD r e f l e c t M i t c h e l l ' s s t a tement : " I n d i v i d u a l s have c h r o n i c d i s e a s e s , f a m i l i e s cope wi th c h r o n i c i l l n e s s " (1983, p. 132 2 ) . The l i m i t a t i o n s of the i l l member were found to be l i m i t a t i o n s of the f a m i l y ; the i s o l a t i o n t h a t accompanies COPD, i s o l a t i o n e x p e r i e n c e d by the e n t i r e f a m i l y u n i t ; and the work r e q u i r e d to l i v e wi th COPD, f a m i l y work. A second c o n c l u s i o n i s t h a t a "COPD l i f e s t y l e " i s commonly adopted by f a m i l i e s who have an a d u l t member wi th COPD. Al though the degree to which the l i f e s t y l e was e v i d e n t i n each f a m i l y v a r i e d , i t was par t of each f a m i l y ' s l i f e . The components of the l i f e s t y l e are imposed on the f a m i l y by the c h a r a c t e r i s t i c s of the d i s e a s e . An impor tant c o n c l u s i o n i s t h a t l i v i n g with COPD i s a s t r e s s f u l and p o t e n t i a l l y d i s r u p t i v e exper ience f o r the f a m i l y u n i t . I t i s an exper i ence which i n h i b i t s the s t r e n g t h of cohes ion of the f a m i l y group, i s o l a t e s the f a m i l y u n i t from the support of o t h e r s , and evokes minimal s u p p o r t - s e e k i n g behav iours by the f a m i l y i t s e l f . A f o u r t h c o n c l u s i o n i s tha t COPD c r e a t e s common c h a l l e n g e s to which the f a m i l i e s must re spond . The c h a l l e n g e s are common, but each f a m i l y develops i t s own cop ing s t r a t e g i e s compat ib le with i t s unique s t y l e to a d j u s t to l i f e wi th COPD. F i n a l l y , and perhaps most i m p o r t a n t , f a m i l i e s wi th COPD have needs which are not p r e s e n t l y be ing addressed by h e a l t h care w o r k e r s . F a m i l i e s need accura te i n f o r m a t i o n from h e a l t h care w o r k e r s , and need support i n order to a d j u s t to a new way of l i f e , face an u n c e r t a i n f u t u r e , manage the i l l n e s s , and develop e f f e c t i v e cop ing s t r a t e g i e s to accommodate the demands of COPD. T h i s r e sea rch i n v e s t i g a t i o n i n t o the f a m i l y exper ience with c h r o n i c o b s t r u c t i v e pulmonary d i sea se c o n t r i b u t e s to the knowledge base nurses can use to improve care p r o v i d e d to the f a m i l y with COPD. I t a l s o emphasizes the need f o r f u r t h e r i n v e s t i g a t i o n i n t o i n t e r v e n t i o n s t r a t e g i e s t h a t w i l l promote the w e l l - b e i n g of the COPD f a m i l y i n l i g h t of i t s s p e c i a l needs. 134 BIBLIOGRAPHY Anthony, E . (1970). The impact of mental and p h y s i c a l i l l n e s s on f a m i l y l i f e . 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Symbol ic i n t e r a c t i o n i s m : A s o c i a l s t r u c t u r a l  v e r s i o n . London: Benj ami n/Cummi ngs. Thorn e , S. (1983) . The f a m i l y cancer e x p e r i e n c e . Unpubl i shed m a s t e r ' s t h e s i s , U n i v e r s i t y of B r i t i s h C o l u m b i a , Vancouver . T o r r e n c e , G. (1981) . H o s p i t a l s as h e a l t h f a c t o r i e s . In D. Coburn ( E d . ) , Hea l th and Canadian s o c i e t y : S o c i o l o g i c a l p e r s p e c t i v e s (pp. 254-273) . Don M i l l s : F i t z h e n r y & W h i t e s i d e . T r a v e r , G. (1975) . L i v i n g wi th c h r o n i c r e s p i r a t o r y d i s e a s e . American Journa l of N u r s i n g , 75, 1777-1781. T r a v e r , G. ( E d . ) . (1982) . R e s p i r a t o r y n u r s i n g : The s c i e n c e and  the a r t . New Y o r k : John Wiley & Sons. Verwoerdt , A . (1972) . P s y c h o p a t h o l o g i c a l response to s t r e s s of p h y s i c a l i l l n e s s . Advances i n Psychosomatic M e d i c i n e , 8, 119-141. — Weis s , 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 ( E d . ) , Doing unto o ther s (pp. 17-26) . New J e r s e y : P r e n t i c e - H a l 1 . West, J . (1977) . Pulmonary p a t h o p h y s i o l o g y . B a l t i m o r e : The W i l l i a m s Company. W r i g h t , L & Leahey, M. (1984) . Nurses and f a m i l i e s : A guide to  f a m i l y assessment and i n t e r v e n t i o n . P h i l a d e l p h i a : F . A . D a v i s . 141 APPENDIX A P h y s i c i a n Consent Form Date : I g ive D e l i a Roberts p e r m i s s i o n to r e c r u i t p a r t i c i p a n t s f o r the study " F a m i l y Exper i ence with C h r o n i c O b s t r u c t i v e Pulmonary D i s e a s e " from the p a t i e n t s i n my medical p r a c t i c e . I unders tand the study w i l l be approved by the U n i v e r s i t y of B r i t i s h Columbia B e h a v i o u r a l Sc reen ing Committee fo r Research p r i o r to any c o n t a c t wi th p o t e n t i a l p a r t i c i p a n t s . Si gnature 143 APPENDIX C Fami ly Consent Form The Fami ly Exper i ence wi th COPD I n v e s t i g a t o r : D e l i a Roberts I unders tand the purpose of t h i s study i s to unders tand how COPD a f f e c t s our d a i l y f a m i l y l i f e . I understand t h i s study i n v o l v e s : 1. One or two v i s i t s by D. Roberts f o r an i n t e r v i e w with our f a m i l y , l a s t i n g from one to two h o u r s . 2. D i s c u s s i o n of what i t i s l i k e f o r our f a m i l y now t h a t one member has COPD t h a t l i m i t s h i s / h e r a b i l i t y to c a r r y out p r e v i o u s a c t i v i t i e s . 3. Tape r e c o r d i n g s of the i n t e r v i e w s . I unders tand the i n f o r m a t i o n o b t a i n e d w i l l be c o n f i d e n t i a l , and a l l i n f o r m a t i o n w i l l be de s t royed once the study i s comple ted . I unders tand I am under no o b l i g a t i o n to p a r t i c i p a t e i n the s tudy ; my r e f u s a l would not i n f l u e n c e any f u r t h e r care I r e c e i v e ; I may re fuse to answer any q u e s t i o n s asked; and may withdraw from the study at any t i m e . I consent to p a r t i c i p a t e i n the p r o j e c t as e x p l a i n e d , and acknowledge the r e c e i p t of an e x p l a n a t o r y l e t t e r . Date : Si g n a t u r e s : 144 APPENDIX D Interv iew Guide I unders tand t h a t an i l l n e s s l i k e COPD not on ly a f f e c t s (the name of the a d u l t wi th COPD), but must a f f e c t your whole f a m i l y . What i s i t l i k e f o r your f a m i l y now t h a t 's COPD l i m i t s h i s / h e r usual a c t i v i t i e s ? What a spect s of your d a i l y l i f e would you say are a f f ec ted? How does your f a m i l y deal wi th these i n f l u e n c e s ? What a spect s of your f a m i l y l i f e are most impor tant to your f a m i l y now? Have these changed? What are those t h i n g s which now are of most concern to your f a m i l y ? 

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