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The experiences of families of psychiatric patients during hospitalization : qualitative study Rose, Linda Elizabeth 1982

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THE EXPERIENCES OF FAMILIES OF PSYCHIATRIC PATIENTS DURING HOSPITALIZATION: A QUALITATIVE STUDY by LINDA ELIZABETH ROSE B.N., D a l h o u s i e U n i v e r s i t y , 1974 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING i n THE FACULTY OF GRADUATE STUDIES (The S c h o o l o f N u r s i n g ) We a c c e p t t h i s t h e s i s as c o n f o r m i n g t o t h e r e q u i r e d s t a n d a r d THE UNIVERSITY OF BRITISH COLUMBIA A p r i l , 1982 (c) L i n d a E l i z a b e t h Rose, 1982 In presenting t h i s thesis i n p a r t i a l f u l f i l m e n t of the requirements for an advanced degree at the University of B r i t i s h Columbia, I agree that the Library s h a l l make i t f r e e l y available for reference and study. I further agree that permission for extensive copying of t h i s thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. I t i s understood that copying or publication of t h i s thesis 0 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 NUi^s /rvQ-" The University of B r i t i s h Columbia 1956 Main Mall Vancouver, Canada V6T 1Y3 DE-6 (3/81) ABSTRACT T h i s study examined the problem of the l a c k o f understanding of the f a m i l y ' s r e a c t i o n to the psych-i a t r i c h o s p i t a l i z a t i o n o f a f a m i l y member. A review o f the l i t e r a t u r e i n d i c a t e d t h a t l i t t l e has been done to i n c r e a s e our knowledge o f the f a m i l y ' s p e r c e p t i o n of t h i s event i n t h e i r l i v e s . I t f u r t h e r i n d i c a t e d t h a t these f a m i l i e s riave needs and concerns r e s u l t i n g from the experience o f the p s y c h i a t r i c i l l n e s s and h o s p i t a l i z a t i o n . These needs and concerns were not b e i n g addressed by h e a l t h care workers. T h i s q u a l i t a t i v e study u t i l i z e d the phenomenological approach. Data were obtained from seven f a m i l i e s o f p a t i e n t s admitted t o a p s y c h i a t r i c h o s p i t a l f o r the f i r s t time. Two u n s t r u c t u r e d i n t e r v i e w s were conducted with each f a m i l y d u r i n g the course of the p a t i e n t ' s h o s p i t a l i z a t i o n . The content of the i n t e r v i e w s i n c l u d e d d i s c u s s i o n o f a l l aspects o f the h o s p i t a l i z a t i o n with the f a m i l i e s d i r e c t i n g the emphasis toward the aspects t h a t were important t o them. The data were analysed u s i n g the method of constant comparative a n a l y s i s . Major c a t e g o r i e s were developed which r e f l e c t e d the meaning of the h o s p i t a l i z a t i o n experience f o r the f a m i l i e s . The c a t e g o r i e s i n c l u d e d acknowledging the h o s p i t a l as a s o l u t i o n t o the problem, reframing past events to make sense o f the present, a s s i m i l a t i n g the experience i n t o t h e i r every-day l i v e s , and q u e s t i o n i n g the f u t u r e i n r e l a t i o n t o the present experience of the i l l n e s s and the h o s p i t a l i z a t i o n . The themes were not found t o be d i s c r e t e , s e q u e n t i a l a c t i v i t i e s but were d e s c r i b e d as inter-dependent and c i r c u l a r i n nature. The data were d i s c u s s e d i n r e l a t i o n t o the l i t e r a t u r e reviewed, with comparisons being drawn between those p r e v i o u s s t u d i e s and the c u r r e n t one. 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 , education, and r e s e a r c h were d i s c u s s e d . TABLE OF CONTENTS Page A b s t r a c t i i T a b l e o f C o n t e n t s i v Acknowledgements v i i CHAPTER I : INTRODUCTION TO THE PROBLEM AND PURPOSES 1 S t a t e m e n t o f t h e P r o b l e m 6 P u r p o s e s o f t h e S t u d y 6 D e f i n i t i o n o f Terms 7 I n t r o d u c t i o n t o t h e M e t h o d o l o g y 8 A s s u m p t i o n s o f t h e S t u d y 10 L i m i t a t i o n s o f t h e S t u d y 10 Summary 11 CHAPTER I I : REVIEW OF THE LITERATURE 12 C o m p a r i s o n o f P h y s i c a l and M e n t a l I l n e s s e s : Impact on t h e F a m i l y 13 F a m i l i e s o f P s y c h i a t r i c P a t i e n t s 20 P s y c h o a n a l y t i c T h e o r y : F a m i l y As An E t i o l o g i c a l F a c t o r 20 I n t e r p e r s o n a l T h e o r y : Impact o f M e n t a l I l l n e s s on F a m i l y I n t e r a c t i o n s 21 Systems T h e o r y : E f f e c t o f H o s p i t a l i z a t i o n on F a m i l y F u n c t i o n i n g 30 N u r s i n g R e s e a r c h o f t h e F a m i l y o f t h e P s y c h i a t r i c P a t i e n t 34 Summary 36 i v V Page CHAPTER I I I : METHODOLOGY 40 S e l e c t i o n o f P a r t i c i p a n t s 40 C r i t e r i a F o r S e l e c t i o n 41 S e l e c t i o n P r o c e d u r e 42 D e s c r i p t i o n o f S e l e c t e d F a m i l i e s 43 D a t a C o l l e c t i o n 45 C o n s t r u c t i o n o f A c c o u n t s 46 D a t a A n a l y s i s 48 E t h i c a l C o n s i d e r a t i o n s 48 Summary 50 CHAPTER IV: PRESENTATION OF ACCOUNTS 51 The P r o c e s s o f A c c e p t i n g H o s p i t a l i z a t i o n as a S o l u t i o n 52 The M e a n i n g A t t a c h e d t o I l l n e s s and T r e a t m e n t 56 R e s t r u c t u r i n g t h e P a s t : The P r o c e s s o f U n d e r s t a n d i n g 62 R e f r a m i n g : A d d i n g M e a n i n g t o S p e c i f i c E v e n t s ; 62 The P r o c e s s o f S e l f - E v a l u a t i o n 66 The P r o c e s s o f A s s i m i l a t i n g t h e I l l n e s s i n t o F a m i l y F u n c t i o n i n g 69 E x a m i n i n g t h e F u t u r e : The P r o c e s s o f D e a l i n g W i t h Unknowns 80 D e f i n i n g R e l a t i o n s h i p s 80 The P o s s i b i l i t y o f C u r e 82 The Need F o r S e p a r a t i o n 84 Summary 85 v i Page CHAPTER V: DISCUSSION OF ACCOUNTS 87 Impact o f P h y s i c a l and M e n t a l I l l n e s s e s On t h e F a m i l y 88 F a m i l i e s o f P s y c h i a t r i c P a t i e n t s 91 P s y c h o a n a l y t i c T h e o r y : F a m i l y As an • E t i o l o g i c a l F a c t o r 91 I n t e r p e r s o n a l T h e o r y : Impact o f M e n t a l I l l n e s s On F a m i l y I n t e r a c t i o n s 95 D i f f i c u l t i e s A c c e p t i n g I l l n e s s 96 The P e r c e p t i o n o f S t i g m a 98 Ma k i n g D e c i s i o n s R e g a r d i n g C a r e o f t h e P a t i e n t 99 C h a n g i n g E x p e c t a t i o n s 101 Systems T h e o r y : The F a m i l y R e a c t s To H o s p i t a l i z a t i o n 103 N u r s i n g R e s e a r c h o f t h e F a m i l y o f t h e P s y c h i a t r i c P a t i e n t 108 Summary 112 CHAPTER V I : SUMMARY, CONCLUSIONS, IMPLICATIONS ' FOR NURSING 113 Summary 113 C o n c l u s i o n s 115 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 117 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 120 I m p l i c a t i o n s f o r N u r s i n g R e s e a r c h 121 BIBLIOGRAPHY 124 APPENDIX A: INFORMATION AND CONSENT FORMS 131 APPENDIX B: INTERVIEW GUIDES 137 ACKNOWLEDGEMENTS I w i s h t o e x p r e s s my s i n c e r e t h a n k s t o t h e members o f my t h e s i s c o m m i t t e e f o r t h e i r s u p p o r t and g u i d a n c e : t o J o a n A n d e r s o n , c h a i r p e r s o n , f o r h e r e x p e r t i s e and e n t h u s i a s m , and t o C r i s s G r e e n , f o r h e r c r i t i c a l comments and h e r u n f a i l i n g s u p p o r t o f my e f f o r t s . T h e i r w i l l i n g n e s s t o g i v e f r e e l y o f t h e i r t i m e and e n e r g y t o t h i s p r o j e c t was g r e a t l y a p p r e c i a t e d . I a l s o w i s h t o g r a t e f u l l y a c k n o w l e d g e t h e c o - o p e r a t i o n o f t h e s t a f f o f C2B S t . P a u l ' s H o s p i t a l , and t h e s t a f f o f H e a l t h S c i e n c e s C e n t r e H o s p i t a l and Richmond G e n e r a l H o s p i t a l , f o r t h e i r c o - o p e r a t i o n and e n t h u s i a s m f o r t h i s p r o j e c t . The s t u d y was g r e a t l y f a c i l i t a t e d by t h e i r e f f o r t s on my b e h a l f . The f a m i l i e s who p a r t i c i p a t e d i n t h i s s t u d y d e s e r v e a s p e c i a l t h a n k s . They f r e e l y s h a r e d a p a r t o f t h e i r l i v e s w i t h me and f o r t h a t I am t r u l y g r e a t f u l . To my f r i e n d s and c o l l e a g u e s , I e x p r e s s my a p p r e c i a -t i o n f o r t h e i r u n d e r s t a n d i n g , s u p p o r t , and good humor, w h i c h h e l p e d immensely d u r i n g t h e d i f f i c u l t t i m e s . A v e r y s p e c i a l t h a n k s goes t o my h u s b a n d B i l l , who a l w a y s b e l i e v e d i n my a b i l i t i e s and whose c o n t i n u a l s u p p o r t and u n d e r s t a n d i n g made c o m p l e t i o n o f t h i s p r o j e c t p o s s i b l e . v i i CHAPTER I INTRODUCTION TO THE PROBLEM AND PURPOSES F a m i l i e s o f h o s p i t a l i z e d p a t i e n t s have long been a focus o f i n t e r e s t and concern t o h e a l t h p r o f e s s i o n a l s . The episode o f i l l n e s s and the subsequent h o s p i t a l i z a t i o n i s commonly viewed as a c r i s i s f o r the f a m i l y (Parad, 1965; G l a s s e r , 1970; Anthony, 1969). While t h i s view i s shared by authors and r e s e a r c h e r s concerned with both p h y s i c a l and mental i l l n e s s and treatment, t h e r e has been much l e s s a t t e n t i o n g i v e n t o f a m i l i e s i n the f i e l d o f p s y c h i a t r y . The awareness o f p h y s i c a l i l l n e s s and h o s p i t a l i z a t i o n as a c r i s i s has drawn a t t e n t i o n t o how f a m i l i e s respond t o i l l n e s s . A s i m i l a r viewpoint o f f a m i l i e s o f p s y c h i a t r i c p a t i e n t s i s o n l y j u s t emerging. From the i n i t i a l psycho-a n a l y t i c a l view o f the parents as an important i n f l u e n c e d u r i n g e a r l y c h i l d h o o d , t o the c u r r e n t i n t e r e s t i n systems theory and i t s emphasis on s t r u c t u r e and process w i t h i n f a m i l i e s , t h e r e has been an i n c r e a s i n g awareness o f the importance o f the f a m i l y i n the treatment o f the p a t i e n t . E a r l y r e s e a r c h i n v o l v i n g the f a m i l y and the p s y c h i a t -r i c p a t i e n t has viewed the f a m i l y as an e t i o l o g i c a l f a c t o r , c o n t r i b u t i n g t o the development of symptoms i n the 1 2 p a t i e n t . F o r example, a s t u d y by L i d z and L i d z (1949) d e s c r i b e d t h e f a m i l y o f t h e s c h i z o p h r e n i c p a t i e n t as " a d v e r s e e x t r a - f a m i l i a l f o r c e s t h a t were m a j o r f a c t o r s i n m o l d i n g t h e m i s s h a p e n p e r s o n a l i t y " ( 1 9 4 9 : 3 4 3 ) . A l t h o u g h t h e g e n e r a l l y a c c e p t e d n o t i o n o f t h e s c h i z o p h r e n i g e n i c m o ther was l a t e r c h a l l e n g e d by C a p u t o , h i s s t u d y (1963) c o n t i n u e d t o f o c u s on t h e p a r e n t s and t h e r o l e t h e y p l a y e d i n t h e d e v e l o p m e n t o f p s y c h o t i c r e a c t i o n s . A g r a d u a l change i n t h e f o c u s o f r e s e a r c h h a s b e e n a t t r i b u t e d t o t h e d e - i n s t i t u t i o n a l i z a t i o n o f p a t i e n t s , d e v e l o p m e n t o f more t h e r a p e u t i c t r e a t m e n t s i n v o l v i n g t h e community and t h e f a m i l y , and a c o n c e r n f o r h i g h r a t e s o f r e c i d i v i s m f o r p a t i e n t s . G e n e r a l l y , t h e r e was an i n c r e a s i n g a c c e p t a n c e o f t h e n o t i o n t h a t t h e p a t i e n t c o u l d n o t be t r e a t e d i n i s o l a t i o n . P s y c h i a t r i c h o s p i t a l s and o t h e r t r e a t m e n t u n i t s b e g an c o n s i d e r i n g " f a m i l y - o r i e n t e d " c a r e , b a s e d on t h e a s s u m p t i o n t h a t by h e l p i n g t h e f a m i l y , t h e y were h e l p i n g t h e p a t i e n t . I n o t h e r words, t h e f a m i l y came t o be v i e w e d as i n f l u e n t i a l i n d e t e r m i n i n g t h e s u c c e s s o f t h e p a t i e n t ' s t r e a t m e n t . S t u d i e s on r e c i d i v i s m s u p p o r t e d t h e n o t i o n t h a t t h e p a t i e n t ' s p r o g r e s s a f t e r d i s c h a r g e was d e p e n d e n t upon t h e f a m i l y ' s a t t i t u d e and c o n c e r n s ( K r e i s m a n & J o y , 1 9 7 4:50). The p o s i t i o n w i t h i n t h e f i e l d o f p s y c h i a t r i c n u r s i n g p r a c t i c e w h i c h e m p h a s i z e s t h e i m p o r t a n c e o f c o n s i d e r i n g t h e f a m i l y i s a r e l a t i v e l y new one. J o e l and C o l l i n s (1978) t o o k a d i f f e r e n t p e r s p e c t i v e f r o m most a u t h o r s , 3 s t a t i n g : " I t i s n a t u r a l f o r p s y c h i a t r i c n u r s i n g to c o n s i d e r i n d i v i d u a l h e a l t h and f u n c t i o n i n g w i t h i n the context of a person's present f a m i l y or network of s i g n i f -i c a n t r e l a t i o n s h i p s " (1978:243). Most other n u r s i n g t e x t s n o t i c e a b l y l a c k t h i s o r i e n t a t i o n . Smoyak's review drew a t t e n t i o n to t h i s l a c k , and f u r t h e r s t a t e d t h a t "the i d e a t h a t p s y c h i a t r i c nurses work i n a t h e r a p e u t i c way w i t h f a m i l i e s i s r e l a t i v e l y new" (1976:36). She suggested t h a t a l a c k o f t h e o r e t i c a l development by nurses was a major f a c t o r . As w e l l , r e c e n t a r t i c l e s suggested t h a t the f a m i l y ' s r e a c t i o n was not always considered, and s p e c i f i c d i r e c t i o n s as to how to i n t e r v e n e w i t h f a m i l i e s were l a c k i n g . The l a c k o f t h e o r e t i c a l development concerning the f a m i l y seems to be supported by Anderson's (1977) o b s e r v a t i o n s . She suggested t h a t the f a m i l y had i t s own concerns, a n x i e t i e s , and needs a s s o c i a t e d w i t h the h o s p i t a l experience, i n c l u d i n g the need f o r support and i n f o r m a t i o n . She observed t h a t the f a m i l i e s i n her study experienced d i f f i c u l t i e s i n d e a l i n g with "the s o c i a l impact of p s y c h i a t r i c h o s p i t a l i z a t i o n and w i t h d e c i d i n g what i n f o r m a t i o n should be shared and w i t h whom" (1977: 699). Her o b s e r v a t i o n s r e s u l t e d i n the c o n c l u s i o n t h a t i t i s important to have knowledgeable s t a f f t o i n t e r a c t w i t h the f a m i l y to meet t h e i r needs. A review o f more rec e n t l i t e r a t u r e r e v e a l s an emerging acceptance of Anderson's viewpoint. The 4 d e v e l o p m e n t o f s u p p o r t g r o u p s f o r t h e f a m i l y , s u c h as d e s c r i b e d b y Atwood and W i l l i a m s (1978) and f a m i l y -o r i e n t e d p s y c h i a t r i c u n i t s ( T a n g a r i and C l a s s , 1977) have r e s u l t e d f r o m t h e g r a d u a l a w a r e n e s s t h a t t h e h o s p i t a l -i z a t i o n does a f f e c t t h e f a m i l y . However, i t i s s t i l l n o t a g e n e r a l l y a c c e p t e d o r e v e n u n d e r s t o o d n o t i o n i n a c t u a l p r a c t i c e , s i n c e as H a r b e n o b s e r v e d : "most t r a d i t i o n a l i n - p a t i e n t u n i t s i n c l u d e f a m i l i e s o n l y as s o u r c e s o f h i s t o r i c a l i n f o r m a t i o n a b o u t t h e i d e n t i f i e d p a t i e n t " ( 1 9 7 9 : 2 8 2 ) . He went on t o s a y t h a t l i t t l e h a d b e e n done t o g e n e r a t e s u b s t a n t i v e d a t a t o s u p p o r t i n t e r v e n t i o n s . R e s e a r c h t h a t h a s f o c u s e d on t h e f a m i l y , h a s i n d e e d t e n d e d t o c o n c e r n i t s e l f more w i t h t h e f a m i l y ' s a t t i t u d e s t o w a r d m e n t a l i l l n e s s , t h a n w i t h an i d e n t i f i c a t i o n o f t h e i r n e e d s . F a m i l i e s were a s k e d i n one s t u d y , f o r example, how t h e y f e l t a b o u t t h e p s y c h i a t r i c h o s p i t a l i z a -t i o n o f a r e l a t i v e , w i t h i n t h e c o n t e x t o f t h e i r a t t i t u d e s t o w a r d t h e h o s p i t a l and i t s p e r s o n n e l . 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 y f e l t i s o l a t e d f r o m t h e h o s p i t a l and a l i e n a t e d f r o m t h e p a t i e n t (Rose, 1959:198). I t h a s b e e n s u g g e s t e d by o t h e r r e s e a r c h t h a t t h e f a m i l y e x p e r i e n c e s a v a r i e t y o f r e a c t i o n s t o t h e m e n t a l l y i l l member. Most f r e q u e n t l y , a u t h o r s h a v e i d e n t i f i e d f e e l i n g s o f g u i l t , shame, f e a r , a n x i e t y , a n g e r , e v e n d e n i a l d i r e c t e d t o w a r d t h e p a t i e n t a n d / o r t h e h o s p i t a l s t a f f ( L e w i s and Z e i c h n e r , 1960; H a r t o c o l t i s , 1 9 65). R e a c t i o n s s u c h as r e l i e f e x p e r i e n c e d when t h e p a t i e n t s 5 were removed from the home were i d e n t i f i e d l e s s o f t e n , although t h i s was suggested i n one study (Grad & Sainsbury, 1968) and d i s c u s s e d b r i e f l y by other authors (Bray and B i r d , 1969). Such r e s e a r c h has drawn g r e a t e r a t t e n t i o n to the importance of c o n s i d e r i n g the f a m i l y d u r i n g the treatment o f the p a t i e n t . In summary, the importance of c o n s i d e r i n g the f a m i l y has evolved from an h i s t o r i c a l i n t e r e s t to an understand-i n g of the importance of the s t r u c t u r e and processes w i t h i n the f a m i l y u n i t . I n t e r e s t i n the f a m i l y o f the p s y c h i a t r i c p a t i e n t has changed from viewing the f a m i l y as a cause of i l l n e s s t o viewing i t as important i n the treatment o f the p a t i e n t . Observations i n c l i n i c a l s e t t i n g s have r e v e a l e d a l a c k o f knowledge and under-st a n d i n g about the e f f e c t o f p s y c h i a t r i c h o s p i t a l i z a t i o n on the f a m i l y . Research t o t h i s p o i n t has focused l a r g e l y on a t t i t u d e s , and the f e e l i n g s and r e a c t i o n s of f a m i l i e s have been n e g l e c t e d . I f f a m i l y - o r i e n t e d treatment centers are t o be e f f e c t i v e , r e s e a r c h must now be concerned with i n c r e a s i n g our knowledge and understanding of the impact o f the h o s p i t a l i z a t i o n on the f a m i l y . Although numerous a r t i c l e s d e s c r i b e the i n c l u s i o n o f the f a m i l y i n care, l i t t l e r e s e a r c h has attempted to i d e n t i f y how the f a m i l y p e r c e i v e s the experience o f h o s p i t a l i z a t i o n o f a r e l a t i v e (Rose, 1959). The r e q u i r e -ment f o r f a m i l y - o r i e n t e d n u r s i n g care has been i d e n t i f i e d , but has not been e f f e c t i v e l y implemented, due to l a c k of 6 s p e c i f i c i n f o r m a t i o n a b o u t t h e needs o f t h e f a m i l y . The i m p o r t a n c e o f c o n s i d e r i n g f a m i l i e s o f p s y c h i a t r i c p a t i e n t s h as t h u s b e e n s u p p o r t e d by t h e l i t e r a t u r e . The l a c k o f u n d e r s t a n d i n g a b o u t t h e i m p a c t o f p s y c h i a t r i c h o s p i t a l i z a t i o n on t h e f a m i l y h a s b e e n i d e n t i f i e d as a m a j o r f a c t o r i n t h e f a i l u r e t o c o n s i d e r t h e f a m i l y as c l i e n t s . I t i s h o p e d t h a t t h i s s t u d y w i l l a d d r e s s t h i s p r o b l e m by p r o v i d i n g k n o w l e d g e a b o u t t h e meaning o f p s y c h i a t r i c h o s p i t a l i z a t i o n t o p a t i e n t s ' f a m i l i e s . STATEMENT OF THE PROBLEM I t i s t h e aim o f t h i s r e s e a r c h t o a d d r e s s t h e l a c k o f knowledge, and u n d e r s t a n d i n g o f t h e f a m i l y ' s r e a c t i o n t o t h e p s y c h i a t r i c h o s p i t a l i z a t i o n o f a f a m i l y member. S p e c i -f i c a l l y , t h e s t u d y i s c o n c e r n e d w i t h how t h e f a m i l y u n d e r s t a n d s and e x p l a i n s t h i s h o s p i t a l i z a t i o n e p i s o d e i n t h e i r l i v e s . THE PURPOSES OF THE STUDY The p u r p o s e s o f t h e s t u d y a r e : 1) t o d e s c r i b e , f r o m t h e f a m i l y ' s p o i n t o f view, how t h e y e x p e r i e n c e d a l l a s p e c t s o f t h e f i r s t p s y c h i a t r i c h o s p i t a l i z a t i o n o f a r e l a t i v e , f r o m 7 t h e e v e n t s l e a d i n g up t o a d m i s s i o n t o t h e p o i n t o f d i s c h a r g e . 2) t o d e s c r i b e t h e i r p e r c e p t i o n s o f how t h e y d e a l t w i t h any p r o b l e m s o r c o n c e r n s d u r i n g t h e h o s p i t a l i z a t i o n . 3) t o i d e n t i f y , f r o m t h e f a m i l y ' s p o i n t o f view, what t h e y need o r n e e ded f r o m h e a l t h c a r e w o r k e r s d u r i n g t h e h o s p i t a l i z a t i o n p e r i o d . The f o l l o w i n g t e r m s h a v e b e e n u s e d i n t h e above s t a t e m e n t s o f t h e p r o b l e m and p u r p o s e s o f t h e s t u d y , and a r e d e f i n e d h e r e as u s e d by t h e a u t h o r i n t h i s c o n t e x t . DEFINITION OF TERMS 1) F a m i l y f o r t h e p u r p o s e s o f t h i s s t u d y , a f a m i l y i s t h e p e r s o n o r p e r s o n s , r e l a t i v e o r n o n - r e l a t i v e , d e f i n e d by t h e p a t i e n t as b e i n g s i g n i f i c a n t t o h i m o r h e r . 2) E x p e r i e n c e t h e r e a c t i o n t o t h e h o s p i t a l i z a t i o n i n c l u d i n g : c o n c e r n s a b o u t any a s p e c t o f t h e h o s p i t a l i z a t i o n ; any p r o b l e m s o r q u e s t i o n s r a i s e d by t h e e v e n t s o f t h e h o s p i t a l i z a t i o n ; t h e meaning g i v e n t o t h e e v e n t s ; t h e e m o t i o n s f e l t a t t h e b e g i n n i n g o f , d u r i n g , 8 and t o w a r d t h e end o f t h e h o s p i t a l i -z a t i o n ; and t h e e f f e c t on t h e f a m i l y ' s e v e r y d a y l i f e . 3) H o s p i t a l i z a t i o n f i r s t a d m i s s i o n o f a p a t i e n t t o an i n p a t i e n t p s y c h i a t r i c u n i t , l a s t i n g a p p r o x i m a t e l y f o u r t o s i x weeks. 4) P e r c e p t i o n t h e r e c a l l o f f a m i l y members o f t h e e x p e r i e n c e o f h o s p i t a l i z a t i o n t h a t was m e a n i n g f u l t o them as v e r b a l l y communicated t o t h e r e s e a r c h e r . 5) P a t i e n t any p e r s o n e i g h t e e n y e a r s o r o l d e r a d m i t t e d f o r t h e f i r s t t i m e t o an a d u l t p s y c h i a t r i c ward. The p a t i e n t ' s r o l e w i t h i n t h e f a m i l y i s n o t c o n -s i d e r e d a f a c t o r i n s e l e c t i o n , b u t w i l l be a c k n o w l e d g e d and a d d r e s s e d i n t h e a n a l y s i s o f d a t a . INTRODUCTION TO THE METHODOLOGY T h i s s t u d y u t i l i z e d t h e p r i n c i p l e s o f q u a l i t a t i v e r e s e a r c h and i t s d e v e l o p m e n t was b a s e d upon t h e t h e o r -e t i c a l p e r s p e c t i v e o f phenomenology. Q u a l i t a t i v e method-o l o g y was c h o s e n as a p p r o p r i a t e f o r t h e p u r p o s e s o f t h i s s t u d y b e c a u s e i t was s e e n t o p r o v i d e a d e e p e r and r i c h e r u n d e r s t a n d i n g o f human b e h a v i o u r ( R i s t 1979:20). From t h e 9 p h e n o m e n o l o g i c a l p e r s p e c t i v e , t h e r e s e a r c h e r i s d i r e c t e d t o e l i c i t t h e s u b j e c t ' s u n d e r s t a n d i n g o f h i s w o r l d ( 1 9 7 9 : 1 9 ) . T h i s m e t h o d o l o g y d i f f e r s f r o m q u a n t i t a t i v e r e s e a r c h i n t h a t i t goes b e y o n d o b j e c t i v e o b s e r v a t i o n o f b e h a v i o u r and a t t e m p t s t o e l i c i t t h e i n d i v i d u a l ' s p e r c e p t i o n o f t h e s i t u a t i o n b e i n g s t u d i e d . I t c o n s i d e r s t h e p a s t e x p e r i e n c e s and k n owledge u s e d by t h e i n d i v i d u a l t o "make s e n s e " o f t h e e n v i r o n m e n t i n o r d e r t o a c t w i t h i n i t ( C i c o u r e l , 1968:111). A n o t h e r m a j o r d i f f e r e n c e i s t h e r o l e o f t h e r e -s e a r c h e r i n t h e e v e n t s b e i n g s t u d i e d . The p h e n o m e n o l o g i c a l p e r s p e c t i v e r e c o g n i z e s t h a t t h e r e s e a r c h a c t i n v o l v i n g human s u b j e c t s i s a s o c i a l o n e — a n i n t e r a c t i o n between t h e o b s e r v e r and t h e o b s e r v e d — t o w h i c h b o t h b r i n g t h e i r own p e r c e p t i o n s and u n d e r s t a n d i n g o f t h e s i t u a t i o n ( D a v i s , 1980:187; R i s t , 1979:20). The i m p o r t a n c e o f t h i s p e r s p e c t i v e w i t h i n a n u r s i n g c o n t e x t was s t r e s s e d by D a v i s , who i d e n t i f i e d a " c o n c e p -t u a l f i t " b e tween t h e a p p r o a c h e s o f c l i n i c a l n u r s i n g — o b s e r v a t i o n , i n t e r v i e w i n g , i n t e r a c t i o n and i n t e r p e r s o n a l r e l a t i o n s — a n d t h e p h e n o m e n o l o g i c a l a p p r o a c h (1980:194). R a g u c c i f u r t h e r d e f i n e d t h e g o a l o f t h e n u r s e r e s e a r c h e r as one o f u n d e r s t a n d i n g how t h e c l i e n t e x p l a i n s t h e phenomena o f h e a l t h and i l l n e s s ( 1 9 72:321). An a c c e p t a n c e o f t h e s e p r i n c i p l e s a l l o w s t h e r e s e a r c h e r t h e f r e e d o m t o d e v e l o p c o n c e p t u a l i z a t i o n s , r a t h e r t h a n be r e s t r i c t e d by 10 p r e - f o r m e d h y p o t h e s e s . The c o l l e c t i o n o f d a t a , t h e r e f o r e , i s a l s o d i f f e r e n t f r o m t h a t o f q u a n t i t a t i v e m e t h o d o l o g y . As d e s c r i b e d b y Lindemann (1974) who h a s u s e d t h i s method i n h e r own r e s e a r c h , t h e o r i g i n a l s t u d y g r o u p i s c h o s e n as a r e s u l t o f t h e a r e a o f i n t e r e s t o f t h e r e s e a r c h e r ; f u r t h e r compar-i s o n g r o u p s may e v o l v e as c a t e g o r i e s o f d a t a emerge. C o n s t a n t d a t a a n a l y s i s , s i m u l t a n e o u s w i t h d a t a c o l l e c t i o n , may r e s u l t i n an e m e r g i n g t h e o r y o r h y p o t h e s i s t o be t e s t e d l a t e r (1974:106-107). ASSUMPTIONS OF THE STUDY T h i s s t u d y i s b a s e d on t h e a s s u m p t i o n t h a t t h e f a m i l y h a s a v a r i e t y o f r e s p o n s e s r e l a t e d t o t h e h o s p i t a l e x p e r i -e n c e . I t i s a l s o assumed t h a t t h e i n f o r m a t i o n t h e f a m i l y p r o v i d e s a b o u t t h e s e e x p e r i e n c e s i s an a c c u r a t e r e p o r t i n g o f t h e meaning o f t h e e x p e r i e n c e f o r them. LIMITATIONS OF THE STUDY The w i l l i n g n e s s o f t h e s u b j e c t s t o r e p o r t i n d e t a i l t o t h e r e s e a r c h e r may h a v e l i m i t e d t h e e x t e n t o f t h e d a t a and a f f e c t e d t h e f i n a l outcome o f t h e s t u d y . A l t h o u g h t h e r o l e o f i n t e r v i e w e r as r e s e a r c h e r was e m p h a s i z e d , t h e 11 p a r t i c i p a n t s may have responded t o the r e s e a r c h e r as nurse: requests f o r h e l p d u r i n g the i n t e r v i e w s e s s i o n s d i d occur. The w r i t t e n i n f o r m a t i o n , r e i n f o r c e d p r i o r t o the i n t e r -view, and the s i t e of the i n t e r v i e w away from the h o s p i t a l s e t t i n g minimized t h i s p o s s i b i l i t y . When requests f o r h e l p d i d occur, they were r e f e r r e d t o the a p p r o p r i a t e s t a f f on the u n i t . The r i c h n e s s of the data o b t a i n e d was l i m i t e d by the time c o n s t r a i n t s of the study. These l i m i t a t i o n s prevented the use of more ex t e n s i v e data c o l l e c t i o n methods, such as f i e l d o b s e r v a t i o n s of the f a m i l i e s i n the h o s p i t a l s e t t i n g . SUMMARY Th i s chapter has d e s c r i b e d the development of the problem and has i d e n t i f i e d the purposes of the study. The methodology used was d i s c u s s e d and the assumptions and l i m i t a t i o n s of the study were presented. The next chapter w i l l examine the l i t e r a t u r e -that i s r e l e v a n t to the problem and purposes o f the study. CHAPTER I I REVIEW OF THE LITERATURE T h i s c h a p t e r w i l l p r e s e n t and c r i t i c a l l y examine r e s e a r c h t h a t h a s b e e n c o n c e r n e d w i t h f a m i l i e s o f p s y c h -i a t r i c p a t i e n t s . The a i m o f t h e d i s c u s s i o n w i l l be t o i l l u s t r a t e t h e need f o r t h e p r e s e n t s t u d y as w e l l as t o p r o v i d e a c o n c e p t u a l b a c k g r o u n d t o e x p l a i n t h e d e v e l o p m e n t o f t h e p r o b l e m and p u r p o s e s o f t h i s s t u d y . I n d o i n g so, t h e d i s c u s s i o n w i l l f o c u s on t h r e e m a j o r a r e a s . F i r s t , as d i s c u s s e d i n C h a p t e r I, much work h a s b e e n done r e g a r d i n g t h e i m p a c t o f p h y s i c a l i l l n e s s on t h e f a m i l y . The a p p l i c -a b i l i t y o f t h i s work t o p s y c h i a t r i c i l l n e s s must be c o n s i d e r e d s i n c e many s t u d i e s h a v e compared p h y s i c a l and m e n t a l i l l n e s s . T h e r e f o r e , s e v e r a l s t u d i e s done i n t h i s a r e a w i l l be d i s c u s s e d i n o r d e r t o p r o v i d e an i m p o r t a n t c o n t r a s t t o t h e s u b s e q u e n t r e v i e w o f r e s e a r c h on t h e i m p a c t o f m e n t a l i l l n e s s . S e cond, t h e g r o u p o f s t u d i e s more s p e c i f i c a l l y c o n c e r n e d w i t h p s y c h i a t r i c i l l n e s s and h o s p i t a l i z a t i o n w i l l be p r e s e n t e d . G i v e n t h a t t h e s t u d y i s u t i l i z i n g t h e p h e n o m e n o l o g i c a l p e r s p e c t i v e , t h i s w r i t e r d i d n o t c h o o s e a p a r t i c u l a r t h e o r e t i c a l framework by w h i c h t o v i e w t h e f a m i l y o f t h e p s y c h i a t r i c p a t i e n t . However,' i t was 13 n e c e s s a r y t o examine t h e p r e d o m i n a n t frameworks i n t h e l i t e r a t u r e , i n o r d e r t o u n d e r s t a n d and a p p r e c i a t e ways i n w h i c h f a m i l i e s o f t h e s e p a t i e n t s were v i e w e d i n t h e p a s t . F o r t h i s r e a s o n , t h e r e s e a r c h d i s c u s s e d i n t h e s e c o n d s e c t i o n o f t h i s c h a p t e r w i l l be o r g a n i z e d w i t h i n t h e f o l l o w i n g t h e o r e t i c a l f r a m e w o r k s : 1) p s y c h o a n a l y t i c t h e o r y , w h i c h v i e w s t h e f a m i l y as an e t i o l o g i c a l f a c t o r ; 2) i n t e r p e r s o n a l t h e o r y , w h i c h c o n s i d e r s t h e s o c i o -l o g i c a l p e r s p e c t i v e o f r o l e s and i n t e r p e r s o n a l r e l a t i o n s h i p s ; 3) s y s t e m s t h e o r y , w h i c h v i e w s t h e p a t i e n t as p a r t o f t h e l a r g e r f a m i l y s y s t e m . F i n a l l y , n u r s i n g r e s e a r c h r e l e v a n t t o t h e p u r p o s e o f t h i s s t u d y w i l l be d i s c u s s e d . W h i l e t h e s t u d i e s r e p o r t e d h e r e may f i t i n t o one o f t h e above t h e o r e t i c a l frameworks, i t was f e l t t h a t t h e r e l a t i v e l a c k o f n u r s i n g r e s e a r c h i n t h i s a r e a must be h i g h l i g h t e d i n t h i s way, i n o r d e r t o f u r t h e r i l l u s t r a t e t h e need f o r t h e p r e s e n t s t u d y . COMPARISON OF PHYSICAL AND MENTAL ILLNESSES: IMPACT ON THE FAMILY R e s e a r c h f o c u s i n g on t h e f a m i l y o f t h e p h y s i c a l l y i l l p a t i e n t t e n d e d t o examine t h e p s y c h o l o g i c a l i m p a c t o f t h e . i l l n e s s i n two ways: 1) sudden, l i f e - t h r e a t e n i n g i l l n e s s e s 14 such as myocardial i n f a r c t i o n , s t r o k e , or impending surgery (De La Mata et a l . , 1960) were viewed as a c r i s i s f o r the f a m i l y and 2) c h r o n i c i l l n e s s such as c y s t i c f i b r o s i s , d i a b e t e s , p h y s i c a l d i s a b i l i t i e s were seen as a s t r e s s f o r the f a m i l y (Anderson, 1960; C r a i n et a l . , 1966; Skipper et a l . 1968). V a r i a b l e s such as economic s t a t u s , r o l e of the p a t i e n t i n the f a m i l y , the e f f e c t s o f c u l t u r a l backgrounds, and the s e v e r i t y o f the i l l n e s s were among those examined i n these s t u d i e s . While most r e s e a r c h e r s d e f i n e d a s p e c i f i c i l l n e s s and examined i t s e f f e c t s on the f a m i l y , others chose t o com-pare p h y s i c a l and mental i l l n e s s . I n t e r e s t i n g l y , i n reviewing these s t u d i e s , i t was noted t h a t the comparison was most o f t e n with c h r o n i c i l l n e s s , f o r example, tuberc u -l o s i s (Anthony, 1969) or asthma (Block, 1969). Other r e s e a r c h e r s n o t i c e a b l y omitted p s y c h i a t r i c p a t i e n t s from t h e i r s t u d i e s . Thus, the c o n f l i c t i n g r a t i o n a l e s f o r such i n c l u s i o n or e x c l u s i o n o f mental i l l n e s s from r e s e a r c h on the impact of i l l n e s s i n d i c a t e a need t o study t h i s body o f r e s e a r c h f o r c l a r i f i c a t i o n o f i t s r e l e v a n c e . S t u d i e s which viewed i l l n e s s e s as s t r e s s f u l s i t u a t i o n s f o r f a m i l i e s , but excluded p s y c h i a t r i c i l l n e s s , are e x e m p l i f i e d by Ho l l i n g s h e a d ' s (1970) study o f the impact of p h y s i c a l i l l n e s s o f a husband or wife on the p a t i e n t and h i s or her spouse. Another example i s the re s e a r c h o f Stember (1977) which looked a t the f a m i l y s t r e s s experienced as an a d u l t member was h o s p i t a l i z e d . 15 These two s t u d i e s w i l l now be examined. While H o l l i n g s h e a d ' s study concentrated on the impact o f the i l l n e s s on the h o s p i t a l i z e d p a t i e n t , he a l s o exam-ined the r e a c t i o n s o f the spouse t o the p a t i e n t ' s h o s p i t -a l i z a t i o n , and i n t h i s way h i s study i s s i m i l a r to Stem-ber's r e s e a r c h . H o l l i n g s h e a d c a t e g o r i z e d the impact o f the h o s p i t a l i z a t i o n from minimal t o c a t a s t r o p h i c i n 225 fam-i l i e s o f m e d i c a l - s u r g i c a l p a t i e n t s . Using s t r u c t u r e d i n t e r v i e w s and o b s e r v a t i o n , he assessed the f a m i l i e s as f o l l o w s : 32 per cent experienced "minimal" impact (t h a t i s , they were judged as coping s u c c e s s f u l l y ) , 27 per cent experienced moderate impact (they experienced d i s r u p t i o n of t h e i r i n i t i a l adjustment t o the i l l n e s s when the p a t -i e n t was h o s p i t a l i z e d ) , 26 per cent experienced e x t e n s i v e impact (there was a major d i s r u p t i o n o f r o l e s ) , and 15 per cent o f the spouses s u f f e r e d c a t a s t r o p h i c impact ( t h e i r f a m i l y f u n c t i o n i n g and s t r u c t u r e were s e v e r e l y a f f e c t e d ) . While these c a t e g o r i e s g i v e some i n d i c a t i o n o f the v a r i a t i o n s i n responses t o the i l l n e s s and h o s p i t a l i z a -t i o n , the value o f the r e s u l t s i s q u e s t i o n a b l e , i n t h a t t h e r e was a l a c k o f c l e a r d e f i n i t i o n o f the means o f assessment. A f u r t h e r f i n d i n g r e p o r t e d i n t h i s study was the "strong" r e l a t i o n s h i p between the type and s e v e r i t y o f p h y s i c a l d i s a b i l i t y and the emotional response o f the f a m i l y based on the p a t i e n t ' s a b i l i t y t o f u l f i l l h i s r o l e . Again, t h i s was not c l e a r l y d e f i n e d or i d e n t i f i e d , and one must assume i t was based on an assessment by the 16 r e s e a r c h e r , s i n c e i t was not made e x p l i c i t . Stember's r e s e a r c h u t i l i z e d s i m i l a r methodology t o H o l l i n g s h e a d ' s . While H o l l i n g s h e a d organized h i s study from the p e r s p e c t i v e o f r o l e theory, Stember was i n t e r e s t e d i n s t r e s s theory, and based her study on the assumption t h a t h o s p i t a l i z a t i o n i s a s t r e s s f u l event. The v a r i a b l e s o f u n f a m i l i a r i t y with the h o s p i t a l environment and l a c k of p r e v i o u s experience were i d e n t i f i e d as c o n t r i b u t i n g to t h a t s t r e s s . As w e l l , the len g t h o f the i l l n e s s and the f a m i l y ' s p e r c e p t i o n o f i t s s e v e r i t y a l s o a f f e c t e d the amount o f s t r e s s e x p e r i e n c e d — t w o f i n d i n g s t h a t were s i m i l a r t o those i n the H o l l i n g s h e a d study. S i m i l a r l y , both s t u d i e s r e p o r t e d t h a t the sex o f the p a t i e n t had no e f f e c t on the f a m i l i a l s t r e s s experienced. Stember's r e s e a r c h appeared t o be the stronger study i n t h i s area, f o r two reasons. She c l e a r l y d e f i n e d the v a r i a b l e s to be s t u d i e d and supported her assumptions by reviewing the l i t e r a t u r e . Furthermore, she addressed the i s s u e o f p r e v i o u s i l l n e s s experiences by c o n s i d e r i n g t h i s v a r i a b l e i n the a n a l y s i s . Stember i d e n t i f i e d t h i r t e e n v a r i a b l e s and obtained data f o r measurement s c a l e s by means of i n t e r v i e w s , q u e s t i o n n a i r e s , and c h a r t a u d i t s . Three hypotheses were supported: 1) pr e v i o u s h o s p i t a l experience reduced s t r e s s ; 2) degree o f s t r e s s was p r o p o r t i o n a l t o the l e n g t h o f time i n the same r e s i d e n c e ; and 3) the degree of s e v e r i t y and d u r a t i o n o f i l l n e s s were d i r e c t l y r e l a t e d t o the degree 17 o f s t r e s s e x p e r i e n c e d . T h i s l a s t v a r i a b l e i s o f p a r t i c u l a r i n t e r e s t , i n t h a t i t was t h e f a m i l y ' s p e r c e p t i o n o f t h e s e v e r i t y w h i c h i n f l u e n c e d t h e i r s t r e s s — a p e r c e p t i o n n o t a l w a y s c o n g r u e n t w i t h t h e p h y s i c i a n ' s o r p a t i e n t ' s p e r c e p t i o n . Stember t h u s drew a t t e n t i o n t o t h e i m p o r t a n c e o f c o m m u n i c a t i o n among t h e s e g r o u p s , as w e l l as i n c l u d i n g them i n t h e " d i a g n o s t i c and t h e r a p e u t i c p r o c e s s e s " ( 1 9 7 7 : 7 3 ) . As s t a t e d e a r l i e r , many s t u d i e s compared t h e e f f e c t s o f c h r o n i c p h y s i c a l i l l n e s s e s and m e n t a l i l l n e s s . Two s u c h s t u d i e s w i l l now be examined. A n t h o n y ' s (1969) s t u d y o f t h e r e s p o n s e p a t t e r n s o f f a m i l i e s o f p s y c h o t i c and t u b e r c u l o s i s p a t i e n t s was b a s e d on r o l e t h e o r y as w e l l as on t h e framework o f s y s t e m s t h e o r y w h i c h v i e w e d t h e i l l n e s s as a c h a l l e n g e t o t h e f a m i l y ' s f u n c t i o n i n g . W h i l e some d i f f e r e n c e s were n o t e d between t h e two g r o u p s o f f a m i l i e s , g e n e r a l l y A n t h o n y ' s d i s c u s s i o n made l i t t l e d i s t i n c t i o n . H i s " u n r o o f i n g " method o f l i v i n g w i t h t h e f a m i l y and d o i n g e x t e n s i v e i n t e r v i e w s , was d e s i g n e d t o d i s c o v e r " t h e ways i n w h i c h d i f f e r e n t f a m i l i e s d e a l t w i t h t h e i m p a c t o f i l l n e s s , and t h e c h a n g e s i n o r g a n i z a t i o n and f u n c t i o n w h i c h e n s u e d " (1969:433). A n t h o n y r e p o r t e d s i m i l a r r e a c t i o n s f o r f a m i l i e s o f b o t h p h y s i c a l l y and m e n t a l l y i l l p a t i e n t s . B o t h g r o u p s were d i s r u p t e d b y t h e i l l n e s s , and t h e a u t h o r s n o t e d t h a t t h e r e i n t e g r a t i o n o r d i s i n t e g r a t i o n was d e p e n d e n t upon t h e f a m i l y ' s p r e - m o r b i d s t a t e , t h e i r s o c i o - e c o n o m i c l e v e l , and 18 the s e v e r i t y o f the p a t i e n t ' s i l l n e s s (1970:56). In reading t h i s study, one must q u e s t i o n the author's r a t i o n a l e f o r s e l e c t i n g these two p a r t i c u l a r i l l n e s s e s . While others l i n k e d mental i l l n e s s t o c h r o n i c p h y s i c a l i l l n e s s , thus imp l y i n g a s i m i l a r c h a r a c t e r i s t i c t o the me n t a l l y i l l , Anthony chose a p h y s i c a l i l l n e s s which he d e s c r i b e d as having a strong negative s o c i e t a l r e a c t i o n , a " f e a r of contamination" (1970:56). As w e l l , i n d i s c u s -s i n g the r e s u l t s , Anthony emphasized the e f f e c t s o f the p s y c h o s i s on the f a m i l y and o f f e r e d l i t t l e new i n f o r m a t i o n about the d i f f e r e n t e f f e c t s o f p h y s i c a l and mental i l l n e s s . A s i m i l a r purpose was found i n Davis's study, which a l s o was concerned with the o r g a n i z a t i o n a l p a t t e r n s 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 a d u l t i n the home. Her re s e a r c h was designed t o s p e c i f i c a l l y examine the f a m i l y as i t was a f f e c t e d by and adapted to the i l l n e s s (1980: 476) . In her study, Davis compared t h r e e c o n d i t i o n s : 1) c h r o n i c mental i l l n e s s (not f u r t h e r d e f i n e d ) ; 2) mental r e t a r d a t i o n ; and 3) p h y s i c a l and/or mental i n f i r m i t i e s due to aging. She s p e c i f i c a l l y looked at how the f a m i l y decided to keep the i l l r e l a t i v e at home, how t h a t a f f e c t e d the f a m i l y and i t s p a t t e r n s o f a d a p t a t i o n . As was done i n Anthony's study, Davis u t i l i z e d i n t e n s i v e i n t e r v i e w s o f the f a m i l i e s , but d i d not i n c l u d e o b s e r v a t i o n s o f the f a m i l y . Furthermore, she d e f i n e d as a 19 l i m i t a t i o n o f her study, the f a c t t h a t the f a m i l i e s had t o r e l y on and r e c a l l p a s t events and experiences, whereas Anthony viewed h i s study as strengthened by the process of i n t e r a c t i n g with the f a m i l i e s "at a time of c r i s i s " . How-ever, both s t u d i e s i d e n t i f i e d the importance of e l i c i t i n g the f a m i l y ' s p e r c e p t i o n s of t h e i r experiences - t h e i r e x p l a n a t i o n s of what they d i d and why they d i d i t . A content a n a l y s i s o f the i n t e r v i e w s i n the Davis study r e v e a l e d emerging c a t e g o r i e s , some of which have p a r t i c u l a r r e l e v a n c e t o the area o f t h i s study. For example, the process by which f a m i l i e s decided on home care was r e l a t e d t o t h e i r understanding of the meaning and f u n c t i o n o f h o s p i t a l i z a t i o n . They viewed i n s t i t u t i o n a l care f o r c h r o n i c p a t i e n t s very n e g a t i v e l y ; they f e l t t h a t the i n s t i t u t i o n would f a i l t o meet the p a t i e n t ' s needs, or to r e c o g n i z e him or her as a unique i n d i v i d u a l (1980:47). Other f a c t o r s considered important i n t h i s study were the s e v e r i t y o f the i l l n e s s and the age and h e a l t h s t a t u s o f the c a r e - g i v e r . Both of these were s i m i l a r t o Anthony's f i n d i n g s r e g a r d i n g f a c t o r s t h a t i n f l u e n c e d the f a m i l y ' s response to i l l n e s s . Davis, however, went f u r t h e r i n con-s i d e r i n g the impact of s o c i a l c l i m a t e and the f a m i l i e s ' b e l i e f s and values as important i n f l u e n c e s on the f a m i l i e s ' d e c i s i o n s t o care f o r the p a t i e n t s at home. The r e s e a r c h reviewed thus f a r has examined the impact of p h y s i c a l i l l n e s s on the f a m i l y or has compared the impact of p h y s i c a l and mental i l l n e s s . The next 20 s e c t i o n o f t h i s c h a p t e r w i l l d e a l more s p e c i f i c a l l y w i t h f a m i l i e s o f p s y c h i a t r i c p a t i e n t s . The f i r s t s t u d i e s p r e s e n t e d w i l l examine t h e v i e w t h a t t h e f a m i l y i s a c a u s a l f a c t o r i n t h e m e n t a l i l l n e s s . FAMILIES OF PSYCHIATRIC PATIENTS P s y c h o a n a l y t i c T h e o r y : F a m i l y As An E t i o l o g i c a l F a c t o r B a s e d on t h e w r i t i n g s o f F r e u d , p s y c h o a n a l y t i c t h e o r y a t t e m p t e d t o show t h e r e l a t i o n s h i p between m e n t a l i l l n e s s ( i n p a r t i c u l a r , s c h i z o p h r e n i a ) and t h e f a m i l y . The f a m i l y , and t h e p a r e n t i n p a r t i c u l a r , were v i e w e d as e t i o l o g i c a l f a c t o r s i n an h i s t o r i c a l s e n s e , and t h e r e s e a r c h was s p e c i f i c a l l y a imed a t d e l i n e a t i n g t h e v a r i a b l e s w i t h i n t h e f a m i l y t h a t h a d c a u s e d m e n t a l i l l n e s s . I n one s u c h s t u d y , L i d z and L i d z (1949) examined t h e c a s e r e c o r d s o f 50 s c h i z o p h r e n i c p a t i e n t s t o d e t e r m i n e t h e e f f e c t o f s p e c i f i c f a m i l i a l s i t u a t i o n s on t h e p a t i e n t . T h e i r d a t a i n d i c a t e d t h a t t h e m a j o r i t y (40 o u t o f 50) h a d b e e n s u b j e c t e d t o u n s t a b l e f a m i l y e n v i r o n m e n t s (1949:343). The c o n c e r n w i t h t h e e t i o l o g y o f s c h i z o p h r e n i a r e s u l t e d i n f u r t h e r r e s e a r c h b y L i d z e t a l . (1965) i n t h i s a r e a . I n an e x t e n s i v e s t u d y o f t h e i n t r a - f a m i l i a l e n v i r o n m e n t o f s c h i z o p h r e n i c s , t h e r e s e a r c h e r s u s e d m u l t i p l e i n t e r v i e w s , home v i s i t s , and t h e d i a r i e s o f t h e f a m i l i e s . They summarized t h e i r f i n d i n g s by d e s c r i b i n g a l l 21 f a m i l i e s i n the study as d i s t u r b e d and unable t o meet the needs of the c h i l d r e n (1965: 27). Research conducted w i t h i n the p s y c h o a n a l y t i c p e r s p e c t i v e examined e a r l y c h i l d h o o d r e l a t i o n s h i p s w i t h pare n t s , the mother i n p a r t i c u l a r , t o i d e n t i f y p a t h o l o g i e s w i t h i n the f a m i l y . Caputo's (1963) re s e a r c h was a f u r t h e r i l l u s t r a t i o n of t h i s s c h o o l of thought. Using q u a n t i t a t i v e r a t i n g s c a l e s t o study the parents o f s c h i z o p h r e n i c s , Caputo concluded t h a t both parents " c o n t r i b u t e d t o the s o - c a l l e d s c h i z o p h r e n i c " c h a r a c t e r of the f a m i l y (1963: 355). The p s y c h o a n a l y t i c view o f the p a t h o l o g i c a l f a m i l y , as i l l u s t r a t e d by these s t u d i e s , was d e f i n e d i n a review by Bloch as "a model of l i n e a r c a u s a l i t y " (1974: 182). St u d i e s which c o n s i d e r e d the importance of r e l a t i o n -s h i p s and r o l e e x p e c t a t i o n s among dyads or t r i a d s w i t h i n the f a m i l y w i l l be examined i n the next s e c t i o n . The emphasis i n these s t u d i e s was not on the p a t h o l o g i c a l nature of these r e l a t i o n s h i p s and t h e i r a b i l i t y t o produce and s u s t a i n symptoms. The re s e a r c h e r s i n s t e a d examined the e f f e c t of the i l l n e s s on s p e c i f i c 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 . I n t e r p e r s o n a l Theory: Impact of Mental I l l n e s s on Family  I n t e r a c t i o n s The s t u d i e s i n c l u d e d i n t h i s s e c t i o n had a common focus: the f a m i l y r e l a t i o n s h i p s t h a t were a f f e c t e d when a 22 member became men t a l l y i l l . The s t u d i e s i n c l u d e d here a l l draw a t t e n t i o n t o the response of one or more of the f a m i l y members toward the " s i c k " p a t i e n t . Such f a c t o r s as changing e x p e c t a t i o n s , d i f f i c u l t i e s i n a c c e p t i n g the i l l -ness, making d e c i s i o n s r e g a r d i n g care of the r e l a t i v e , and s h i f t i n g of r e s p o n s i b i l i t i e s were d i s c u s s e d i n the context of a d apting to the i l l member at home. Other s t u d i e s of the f a m i l y i n d i c a t e d the e f f e c t of h o s p i t a l admission on f a m i l y r e l a t i o n s h i p s . Most r e s e a r c h e r s chose to look at s p e c i f i c 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 , most f r e q u e n t l y t h a t of the husband and w i f e . One of the e a r l i e s t major works done i n t h i s area was undertaken by two s o c i o l o g i s t s , Clausen and Yarrow, who were concerned with the problems t h a t a w i f e faced when her husband became men t a l l y i l l (1955). Based on the assumption t h a t mental i l l n e s s was d i s r u p t i v e , these r e s e a r c h e r s hoped to p r o v i d e i n f o r m a t i o n about 1) the w i f e ' s d e f i n i t i o n of, and a b i l i t y t o cope with the i l l -ness; 2) how the i l l n e s s a f f e c t e d the r e l a t i o n s h i p , and 3) the w i f e ' s e x p e c t a t i o n of the h o s p i t a l . Through the use of i n t e n s i v e i n t e r v i e w s , using i n t e r v i e w guides, the r e -searchers attempted t o e l i c i t the wives' p e r c e p t i o n s of these areas. Major assumptions o f the study i n c l u d e d n o t i o n s of the s i t u a t i o n as ambiguous, unstable, i n s e c u r e , and a n x i e t y - p r o d u c i n g f o r the w i f e . The r e s u l t s of the study i n d i c a t e d t h a t a) the wives were r e l u c t a n t to r e c o g n i z e t h e i r husband's mental i l l n e s s 23 and a t t e m p t e d t o e x p l a i n i t p h y s i c a l l y o r s i t u a t i o n a l l y ; b) most o f t e n , i t was t h e f a m i l y p h y s i c i a n who was f i r s t c o n t a c t e d ; and c) t h e w i v e s t r i e d t o c o n c e a l t h e p r o b l e m f r o m o t h e r s , a n t i c i p a t i n g an u n f a v o u r a b l e r e a c t i o n . Thus, t h i s s t u d y c a l l e d a t t e n t i o n t o t h e i m p o r t a n t v a r i a b l e o f t h e s t i g m a o f m e n t a l i l l n e s s . I m p o r t a n t t o n o t e when r e v i e w i n g t h i s and o t h e r s t u d i e s o f t h i s t i m e a r e t h e p a r a m e t e r s o f t h e h o s p i t a l -i z a t i o n p e r i o d . D u r i n g t h e 1950's t h e m a j o r i t y o f h o s p i t -a l i z a t i o n s were l o n g - t e r m ( t h a t i s , l a s t i n g s e v e r a l y e a r s o r more) as i n d i c a t e d by C l a u s e n and Y a r r o w ' s r e f e r r a l t o m o n t h l y i n t e r v i e w s d u r i n g t h e h o s p i t a l i z a t i o n . As w e l l , t h e r e were a l a r g e number o f c o m m i t t e d p a t i e n t s i n t h e s e s t u d i e s , and much a t t e n t i o n was g i v e n t o t h i s v a r i a b l e . T h e s e f a c t o r s must be k e p t i n mind when r e l a t i n g t h e f i n d i n g s t o p r e s e n t - d a y s i t u a t i o n s . An i m p o r t a n t c o n t r i b u t i o n t o o u r u n d e r s t a n d i n g o f t h e i m p a c t o f m e n t a l i l l n e s s was made by F l e c k ' s s t u d y o f t h e f a m i l y ' s e x p e r i e n c e d u r i n g p s y c h i a t r i c h o s p i t a l i z a t i o n ( 1 9 6 5 ) . T h i s s t u d y c o n t i n u e d t o l o o k a t t h e f a m i l y ' s r o l e i n t h e d e v e l o p m e n t o f symptoms, b u t a l s o c o n s i d e r e d t h e i m p a c t o f t h e h o s p i t a l i z a t i o n on t h e f a m i l y . D r a w i n g upon t h e d a t a f r o m a l a r g e r s t u d y by L i d z e t a l . ( 1 9 6 5 ) , F l e c k i d e n t i f i e d r e s i s t a n c e by f a m i l i e s t o t h e a d m i s s i o n o f t h e r e l a t i v e t o h o s p i t a l . The r e s i s t a n c e , he f e l t , was due t o t h e r e l u c t a n c e o f t h e f a m i l y t o r e c o g n i z e t h e m e n t a l i l l n e s s o f t h e r e l a t i v e , and t h e f e e l i n g s o f 24 g u i l t and f a i l u r e they experienced when the admission o c c u r r e d . He f u r t h e r observed t h a t some f a m i l i e s needed t o exclude the p a t i e n t from the f a m i l y u n i t , because they f e l t embarrassed or angry. F l e c k suggested t h a t such f e e l -i ngs and r e a c t i o n s c o u l d be adequately d e a l t with by a f a m i l y support group. Another c o n t r i b u t i o n t o t h i s area was made by Lewis and Zeichner (1960) who examined the r e a c t i o n s o f f a m i l i e s up t o the p o i n t o f the p a t i e n t ' s admission to h o s p i t a l and t h e r e f o r e d i d not d e a l w i t h the h o s p i t a l i z a t i o n per se. The purposes of t h e i r r e s e a r c h were t o i d e n t i f y : 1) the f a m i l i e s ' r e c o g n i t i o n of the mental i l l n e s s ; 2) t h e i r a t t i t u d e toward mental i l l n e s s ; 3) t h e i r ways of coping with the i l l n e s s ; and 4) the treatment they sought p r i o r t o h o s p i t a l i z a t i o n . While t h e i r methodology was not w e l l r e p o r t e d , they d i d s t a t e t h a t based on i n t e r v i e w s with the f a m i l i e s , the f o l l o w i n g c o n c l u s i o n s c o u l d be made: 1) 72 of 109 f a m i l i e s i n t e r v i e w e d r e c o g n i z e d the r e l a t i v e t o be ment a l l y i l l ; 2) a t t i t u d e s ranged from "sympathetic under-s t a n d i n g " t o apprehension and g u i l t ; 3) a v a r i e t y o f coping methods were used by f a m i l i e s , such as expecting l e s s of the r e l a t i v e , a response r e p o r t e d by 22 of the f a m i l i e s . Although the s t a t i s t i c a l f i n d i n g s of t h i s study d i d not always support the notio n s o f predominant r e a c t i o n s and a t t i t u d e s o f f a m i l i e s , i t d i d c l e a r l y i n d i c a t e the 25 need f o r f u r t h e r study i n t h i s a r ea. Lewis and Zeichner brought a t t e n t i o n t o the importance of c o n s i d e r i n g the f a m i l y p r i o r t o h o s p i t a l i z a t i o n , and the i m p l i c a t i o n s t h a t t h i s has f o r the h o s p i t a l i z a t i o n p e r i o d . A focus of Lewis and Zeichner's r e s e a r c h was the a t t i t u d e s of the f a m i l y toward mental i l l n e s s and how these a t t i t u d e s a f f e c t e d r e l a t i o n s h i p s with the p a t i e n t . Other r e s e a r c h e r s were a l s o i n t e r e s t e d i n t h i s viewpoint of the f a m i l y . Rose (1959) s t u d i e d the a t t i t u d e s of r e l a t i v e s toward the i l l n e s s and h o s p i t a l i z a t i o n of a r e l a t i v e , the e f f e c t o f these a t t i t u d e s on the p a t i e n t ' s h o s p i t a l i z a t i o n , and the change i n a t t i t u d e s r e s u l t i n g from the h o s p i t a l i z a t i o n . Basing h i s study on the assumption t h a t "the development and maintenance o f p s y c h i a t r i c i l l n e s s i s i n f l u e n c e d , i n p a r t , by emotional t i e s among f a m i l y members" (1959: 195), he was concerned w i t h the e f f e c t o f i n t r a f a m i l i a l r e l a t i o n s h i p s on p r o l o n g i n g h o s p i t a l i z a t i o n . The f a m i l i e s of one hundred p a t i e n t s i n a veteran's h o s p i t a l were i n t e r v i e w e d . The average le n g t h of h o s p i -t a l i z a t i o n was nine y e a r s . Rose u t i l i z e d u n s t r u c t u r e d i n t e r v i e w s to e l i c i t the f a m i l i e s ' f e e l i n g s about the treatment the p a t i e n t r e c e i v e d , the cause of the i l l n e s s , and the d i s c h a r g e of the p a t i e n t to the f a m i l i e s ' care (1959:196). In d i s c u s s i n g h i s f i n d i n g s , Rose t a l k e d of " g l e a n i n g " and " i n f e r r i n g " the a t t i t u d e s as w e l l as doing " i n f o r m a l content a n a l y s i s " (1959:196) r e s u l t i n g i n the 26 f o l l o w i n g c o n c l u s i o n s : 1) r e l a t i v e s f e l t p o s i t i v e l y toward the p s y c h i a t r i c h o s p i t a l and i t s treatment of the p a t i e n t ; 2),the. m a j o r i t y of r e l a t i v e s welcomed the f a c t t h a t the h o s p i t a l had "taken over" the p a t i e n t ; 3) the f a m i l i e s wanted more con t a c t with h o s p i t a l p e r s o n n e l ; 4) the f a m i l i e s understood l i t t l e about the treatment the p a t i e n t r e c e i v e d ; 5) there was a tendency f o r the f a m i l i e s t o deny the "mental" symptoms. Examination of the r e s u l t s of these s t u d i e s r e v e a l e d c o n f l i c t i n g statements. Some r e s e a r c h e r s (Lewis and Zeichner) f e l t t h a t the m a j o r i t y o f f a m i l i e s were a b l e t o accept the i l l n e s s of a r e l a t i v e , w h ile others f e l t t h a t the f a m i l i e s tended to deny the "mental symptoms" and e x p l a i n e d the i l l n e s s through p h y s i c a l causes. In some cases, i t was deemed necessary to i n c l u d e o n l y f i r s t admitted p a t i e n t s (Lewis & Zeichner) or only spouses (Clausen and Yarrow), w h i l e other r e s e a r c h e r s made no d i s t i n c t i o n a t a l l . The l e n g t h of admission was a l s o a v a r i a b l e r e c o g n i z e d as i n f l u e n t i a l (Rose, 1959) i n the degree of r e - o r g a n i z a t i o n of r o l e s t h a t o c c u r r e d . S t u d i e s f o c u s i n g on the stigma f e l t by r e l a t i v e ' s a l s o i n d i c a t e d v a r y i n g r e s u l t s . Rose r e p o r t e d t h a t the m a j o r i t y of f a m i l i e s r e p o r t e d no such f e e l i n g s , w h ile others ( F l e c k , Clausen, and Yarrow) r e p o r t e d f e e l i n g s of shame and concealment by r e l a t i v e s . S o c i o l o g i c a l i n t e r e s t i n the v a r i a b l e of " a t t i t u d e " , and i t s e f f e c t on f a m i l y r e l a t i o n s h i p s as represented by 27 the s t u d i e s d i s c u s s e d thus f a r , has been pursued through the use of u n s t r u c t u r e d i n t e r v i e w s o f p a t i e n t s ' f a m i l i e s . However, Freeman (1961) departed from t h i s method and chose t o use a s t r u c t u r e d survey to determine the r e l a t i o n s h i p s between the f a m i l i e s ' a t t i t u d e s toward 1) e t i o l o g y , 2) the h o s p i t a l , 3) normalcy of p a t i e n t s , and 4) r e s p o n s i b i l i t y of p a t i e n t s ; and the age, education, v e r b a l a b i l i t y , and s o c i a l c l a s s of the f a m i l y . Two i n t e r v i e w s were done: one immediately a f t e r d i s c h a r g e of the p a t i e n t , and another a year l a t e r , u s i n g a f i x e d c h o i c e a t t i t u d e s c a l e . The r e s e a r c h e r concluded t h a t r e l a t i v e s ' " e n l i g h t e n e d a t t i t u d e s " toward mental i l l -ness were d i r e c t l y r e l a t e d t o t h e i r l e v e l of formal educa-t i o n , but had no r e l a t i o n t o s o c i a l c l a s s . Of i n t e r e s t a l s o was h i s f i n d i n g t h a t a t t i t u d e s toward outcomes were a s s o c i a t e d w i t h d u r a t i o n or number of h o s p i t a l i z a t i o n s , a f i n d i n g s i m i l a r t o Rose's. Freeman added a note of c a u t i o n to the reader of h i s f i n d i n g s — t h e r e l a t i o n s h i p of v a r i a b l e s was weak and f u r t h e r r e s e a r c h would be needed i n t h i s area (1961: 66). He suggested, however, t h a t e f f o r t s t o i n t e r v e n e with the f a m i l y should i n c l u d e c o n s i d e r a t i o n of these v a r i a b l e s , as w e l l as the v a r i a b l e of s e v e r i t y of the p a t i e n t ' s symptoms. In 1965, Zwerling and Mendelsohn used a s i m i l a r method t o e m p i r i c a l l y measure the v e r b a l and b e h a v i o r a l r e a c t i o n s of the f a m i l y t o : 1) day h o s p i t a l i z a t i o n ; 28 2) f a m i l y therapy and 3) the p a t i e n t ' s i l l n e s s . By obs e r v i n g and l i s t e n i n g t o the f a m i l i e s , the p h y s i c i a n s r a t e d each f a m i l y as " a c t i v e l y o p p o s i t i o n a l , p a s s i v e l y a c c e p t i n g , or a c t i v e l y a c c e p t i n g " (1965:53). In reviewing t h e i r r e s u l t s , however, the authors made s e v e r a l assumptions and admissions of b i a s : 1) they viewed the p a t i e n t as the "scapegoat" o f the f a m i l y ; 2) they assumed t h a t the s t r e s s f u l p e r i o d p r i o r t o admission was f i l l e d w i t h f e e l i n g s of g u i l t and shame and the h o s p i t a l was viewed as a l a s t r e s o r t (1965:62). Zwerling and Mendelsohn r a t e d the f a m i l i e s on the second and f o u r t e e n t h day o f h o s p i t a l i z a t i o n . They summarized t h e i r f i n d i n g s by r e p o r t i n g t h a t : 1) h a l f of the f a m i l i e s were r a t e d as " a c t i v e l y a c c e p t i n g " , i n d i c a t i n g a s u p p o r t i v e a t t i t u d e ; and 2) 61 per cent viewed the p a t i e n t as " i l l " r a t h e r than "bad" which was i n t e r p r e t e d as a negation o f the scapegoating concept (1965:55). While Rose c o n s i d e r e d the h o s p i t a l i z a t i o n p e r i o d , and Freeman the p o s t - d i s c h a r g e p e r i o d , M i l l s (1962) pr o v i d e d data about f a m i l i e s with a men t a l l y i l l r e l a t i v e at home. Of p a r t i c u l a r i n t e r e s t i s h i s i n c l u s i o n i n one i n t e r v i e w of the r e l a t i v e s ' p o i n t p f view o f : 1) the onset of the i l l n e s s , 2) t h e i r r e l a t i o n s h i p with the doctor and the h o s p i t a l , 3) t h e i r a t t i t u d e toward the p a t i e n t ' s i l l n e s s and treatment, and 4) any d i f f i c u l t i e s they encountered i n c a r i n g f o r the p a t i e n t s at home (1962:5). In h i s d i s c u s s i o n of data, M i l l s concluded t h a t 29 f a m i l i e s o f t e n d e n i e d t h e i l l n e s s up t o t h e p o i n t o f h o s p i t a l i z a t i o n , w h i c h f u r t h e r s u p p o r t s Rose's a r g u m e n t s . M i l l s o b s e r v e d t h a t t h e c l o s e r t h e r e l a t i o n s h i p between f a m i l y member and p a t i e n t , t h e l e s s w i l l i n g t h e f a m i l y member was t o v i e w t h e p a t i e n t as m e n t a l l y i l l ( 1962:48), a f i n d i n g p r e v i o u s l y c o n s i d e r e d and s u p p o r t e d i n t h e r e s e a r c h by Rose. R e s e a r c h i n t h i s a r e a o f i n t e r p e r s o n a l r e l a t i o n s h i p s was o r i g i n a l l y d o m i n a t e d by t h e s o c i o l o g i c a l p e r s p e c t i v e ( C l a u s e n and Y a r r o w , 1955; Rose, 1959; F l e c k , 1965; L e w i s and Z e i c h n e r , 1 9 60). T h e s e s t u d i e s were c o n c e r n e d p r i -m a r i l y w i t h t h e e f f e c t o f m e n t a l i l l n e s s on r e l a t i o n s h i p s and v i c e v e r s a . They l o o k e d a t ways i n w h i c h t h e f a m i l y d e a l t w i t h t h e i l l n e s s and a t t h e f a m i l y ' s a t t i t u d e s t o w a r d and r e a c t i o n s t o t h e t r e a t m e n t t h e p a t i e n t r e c e i v e d . The r e s u l t s o f t h e s e s t u d i e s i n d i c a t e s i m i l a r i t i e s as w e l l as c o n t r a d i c t i o n s . F o r example, t h e a b i l i t y o f t h e f a m i l y t o a c c e p t t h e " m e n t a l symptoms" o f t h e r e l a t i v e v a r i e d i n s e v e r a l s t u d i e s ( C l a u s e n and Y arrow, 1955; L e w i s and Z e i c h n e r , 1 9 60). However, t h e i m p o r t a n c e o f c o n s i d -e r i n g t h e " c l o s e t i e s " among f a m i l y members was a g r e e d upon ( M i l l s , 1962; Rose, 1959). The r e v i e w o f t h e r e l e v a n t r e s e a r c h t o t h i s p o i n t h a s h i g h l i g h t e d t h e s h i f t o f f o c u s f r o m t h e f a m i l y as an h i s -t o r i c a l , e t i o l o g i c a l f a c t o r t o t h e i n t e r e s t i n t h e s i g n i -f i c a n t r e l a t i o n s h i p s and r o l e s w i t h i n t h e f a m i l y u n i t . The 30 n e x t s e c t i o n w i l l examine a n o t h e r o r i e n t a t i o n i n t h i s r e s e a r c h : t h e s y s t e m s a p p r o a c h t o v i e w i n g t h e f a m i l y . S ystems T h e o r y : The E f f e c t o f H o s p i t a l i z a t i o n on F a m i l y  F u n c t i o n i n g W h i l e s o c i o l o g i c a l r e s e a r c h c o n t i n u e d t o f o c u s on t h e v a r i a b l e o f s p e c i f i c r o l e s a n d / o r a t t i t u d e s , a c h a n g i n g v i e w p o i n t was e m e r g i n g i n t h e f i e l d o f p s y c h i a t r y as a r e s u l t o f Von B e r t a l a n f f y 1 s (1969) d e v e l o p m e n t o f g e n e r a l s y s t e m s t h e o r y . W h i l e i t i s n o t t h e i n t e n t i o n o r s c o p e o f t h i s r e v i e w t o examine g e n e r a l s y s t e m s t h e o r y and i t s r e l a t e d c o n c e p t s i n g r e a t d e t a i l , i t s a p p l i c a t i o n t o f a m i l i e s o f p s y c h i a t r i c p a t i e n t s w i l l be c o n s i d e r e d . A d e f i n i t i o n o f t h e f a m i l y s y s t e m was p r o v i d e d by H a l l e r , who d e s c r i b e d i t as "a m u t u a l l y r e g u l a t o r y , n a t u r a l g r o u p i n g o f p e r s o n s " ( 1974:462). I t was f u r t h e r d e v e l o p e d by H a z z a r d , who d e s c r i b e d t h e f a m i l y as "an open s y s t e m r e a c t i n g t o changes i n t h e e n v i r o n m e n t i n an a t t e m p t t o m a i n t a i n a s t e a d y s t a t e " ( 1 9 7 1 : 3 8 7 ) . T h i s c o n c e p t o f m a i n t a i n i n g a s t e a d y s t a t e h a s l e d many t h e o r i s t s t o v i e w t h e p s y c h i a t r i c symptoms i n one f a m i l y member as a s i g n a l o f d i s t r e s s o r p a t h o l o g y e x i s t i n g i n t h e l a r g e r f a m i l y u n i t ( B a t e s o n , 1961; Speck, 1968; Bowen, 1 9 5 9 ) . As a r e s u l t o f t h i s t h i n k i n g , f a m i l i e s h a v e been v i e w e d as t h e u n i t o f t r e a t m e n t , r a t h e r t h a n t h e i n d i v i d u a l . The s t u d i e s r e v i e w e d h e r e o f f e r t h e p e r s p e c t i v e o f 31 t h e f a m i l y as an open s y s t e m whose g o a l i s t o m a i n t a i n s y s t e m s t a b i l i t y . A t t e n t i o n i s f o c u s e d on r e a c t i o n s o f f a m i l y members t o c h a n ges o r demands f r o m t h e e n v i r o n m e n t w h i c h t h r e a t e n s y s t e m s t a b i l i t y . The i l l n e s s and h o s p i t a l -i z a t i o n o f a f a m i l y member i s v i e w e d t h e n as a change w h i c h p l a c e s demands on t h e s y s t e m . The i n t e r e s t o f r e -s e a r c h e r s i s t h e r e s p o n s e o f t h e s y s t e m t o t h o s e c h a n g e s , and t h e r e s o u r c e s a v a i l a b l e t o f a m i l i e s t o r e g a i n s y s t e m s t a b i l i t y and resume e f f e c t i v e f a m i l y f u n c t i o n i n g . The o r g a n i z a t i o n o f t h e f o l l o w i n g s t u d i e s t h u s r e f l e c t s t h e i n t e n t i o n o f t h e r e s e a r c h e r s t o f o c u s on t h e r e s p o n s e s o f t h e f a m i l i e s . I n a two y e a r f o l l o w - u p s t u d y , G r a d and S a i n s b u r y (1968) a t t e m p t e d t o compare t h e b u r d e n e x p e r i e n c e d b y f a m i l i e s o f p s y c h i a t r i c p a t i e n t s i n a h o s p i t a l v e r s u s a community t r e a t m e n t s e t t i n g . As w e l l , t h e r e s e a r c h e r s wanted t o compare t h e e f f e c t i v e n e s s o f t h e s e two f a c i l i t i e s i n r e l i e v i n g t h e b u r d e n s o f f a m i l i e s . The c o n c e p t o f b u r d e n i s d e f i n e d i n t h i s s t u d y as " t h e e f f e c t t h e p a t i e n t h a d on t h e work, l e i s u r e , income and h e a l t h o f t h e f a m i l y , on c h i l d r e n and on t h e f a m i l y ' s r e l a t i o n s w i t h t h e i r n e i g h b o u r s " (1972:268). The r a t i n g o f "none," "some," and " s e v e r e " were t a b u l a t e d t o p r o v i d e an o v e r - a l l " f a m i l y - p r o b l e m " s c o r e . I n d e s i g n i n g t h i s s t u d y , G r a d and S a i n s b u r y c h o s e t o s eek e m p i r i c a l d a t a . T h e y i d e n t i f i e d t h e l i m i t a t i o n s o f s u c h a method f o r t h e i r p u r p o s e : t h a t many a s p e c t s o f 32 f a m i l y l i f e a r e n o t o b j e c t i v e l y m e a s u r e a b l e , and t h a t t h e i r methods p r e v e n t e d d i s c u s s i o n o f p o s s i b l e p o s i t i v e e f f e c t s o f t h e i l l n e s s and t r e a t m e n t on t h e f a m i l y ( 1 9 7 2 : 2 7 7 ) . G i v e n t h e s e l i m i t a t i o n s , t h e s t u d y made few c o n c l u s i v e s t a t e m e n t s , o t h e r t h a n t h e r e c o g n i t i o n o f t h e f i n a n c i a l b u r d e n s t h a t a l l t h e f a m i l i e s f a c e d . The v i e w p o i n t o f h o s p i t a l i z a t i o n as a " b u r d e n " was a l s o e x p l o r e d by R o b i n e t a l . i n a s t u d y d e s i g n e d t o compare p s y c h i a t r i c u n i t s t o p s y c h i a t r i c h o s p i t a l s . They d e f i n e d b u r d e n s as " p r o b l e m s c r e a t e d by t h e i l l n e s s " ( 1 9 7 9 : 3 5 ) , s u c h as f i n a n c i a l d i f f i c u l t i e s , d i s r u p t i o n and i n t e r f e r e n c e w i t h s o c i a l and l e i s u r e a c t i v i t i e s . T h e i r method was s i m i l a r t o G r a d and S a i n s b u r y ' s ; t h e y u t i l i z e d s t a n d a r d i n t e r v i e w s b y s o c i a l w o r k e r s t o a s s e s s t h e r e l a t i v e s ' a t t i t u d e s , h e a l t h , and n e e d s . The r e s u l t s i n d i c a t e d t h a t t h e r e were few d i f f e r e n c e s b e tween t h e two g r o u p s — t h e "mean number o f b u r d e n s " was s i m i l a r . E f f e c t s on r e l a t i v e s ' h e a l t h d e c r e a s e d o v e r t h e s t u d y p e r i o d , as d i d t h e i r " needs" ( f i n a n c i a l , s u p p o r t i v e c a r e , and a s s i s t a n c e w i t h h o u s i n g ) . F i n a l l y , t h e r e -s e a r c h e r s a s s e s s e d t h a t t h e d e g r e e o f i n s i g h t o f r e l a t i v e s a l s o i n c r e a s e d i n b o t h g r o u p s . G i v e n t h a t t h e p u r p o s e o f t h i s s t u d y was t o compare a p s y c h i a t r i c u n i t w i t h i n a g e n e r a l h o s p i t a l t o a p s y c h -i a t r i c h o s p i t a l , t h e r e was l i t t l e d i s c u s s i o n on t h e s p e c i f i c e f f e c t s o f h o s p i t a l i z a t i o n p e r se on t h e f a m i l y . T h e r e f o r e , i t d i d n o t p r o v i d e much new o r u s e f u l 33 i n f o r m a t i o n about the f a m i l i e s ' assessment of t h i s s i t u a t i o n i n t h e i r l i v e s . The importance of conducting r e s e a r c h t o understand the viewpoint of the f a m i l y r a t h e r than j u s t i d e n t i f y the problem, has been given some a t t e n t i o n i n recent l i t e r -a t u r e . For example, i n 1972, Greenley c o n s i d e r e d the r e l a t i o n s h i p between the f a m i l y ' s d e s i r e f o r the p a t i e n t ' s d i s c h a r g e , and the a c t u a l time of d i s c h a r g e . Using a v a r i e t y of r e s e a r c h m e t h o d s — o b s e r v a t i o n , s t r u c t u r e d i n t e r v i e w s w i t h d o c t o r s , p a t i e n t s and r e l a t i v e s , and the a u d i t i n g o f c h a r t s — t h e r e s e a r c h e r s i d e n t i f i e d a s t r o n g r e l a t i o n s h i p between the two v a r i a b l e s . More s p e c i f i c a l l y , the f a m i l i e s of p a t i e n t s who had b r i e f h o s p i t a l i z a t i o n s responded p o s i t i v e l y t o d i r e c t i n q u i r y about t h e i r d e s i r e t o have the p a t i e n t d i s c h a r g e d . The author suggested t h a t the f a m i l i e s ' d e s i r e f o r di s c h a r g e of the p a t i e n t was met, even when the p s y c h i a t r i s t d i d not agree t h a t i t was a p p r o p r i a t e . An important p o i n t Greenley made i n d i s c u s s i n g these f i n d i n g s was the need t o c o n s i d e r the f a m i l y and i t s wishes i n the p l a n n i n g o f ca r e . I m p l i c i t i n t h i s statement was the need f o r h e a l t h care workers and f a m i l i e s t o i d e n t i f y each o t h e r s ' goals and p e r c e p t i o n s o f treatment. In f a c t , the author encouraged such r e s e a r c h to determine "the o r i g i n s of f a m i l y d e s i r e s " (1972:35). The importance of i d e n t i f y i n g the problems c r e a t e d by h o s p i t a l i z a t i o n was s t r e s s e d by the s t u d i e s reviewed i n 34 t h i s s e c t i o n . Organized w i t h i n the framework of the f a m i l y as a system, the r e s e a r c h recognized the system's attempts to r e a c t t o and d e a l with change and to r e g a i n a s t a b i l i t y i n i t s f u n c t i o n i n g . A s i m i l a r p e r s p e c t i v e was shared by nu r s i n g r e s e a r c h conducted on f a m i l i e s of p s y c h i a t r i c p a t i e n t s . That p e r s p e c t i v e and the r e s u l t s o f the s t u d i e s , w i l l now be presented. Nursing Research of the Family o f the P s y c h i a t r i c P a t i e n t As i n d i c a t e d by the r e s e a r c h d i s c u s s e d to t h i s p o i n t , the major work i n the area of f a m i l i e s o f p s y c h i a t r i c p a t i e n t s was done by s o c i o l o g i s t s . There has been a marked d e f i c i e n c y of n u r s i n g r e s e a r c h i n t h i s area of nur s i n g , although r e c e n t l y some nurse r e s e a r c h e r s have begun t o focus on the f a m i l y . Two s t u d i e s found by t h i s w r i t e r t o be r e l e v a n t t o the area under study concern the f a m i l y with a c h r o n i c a l l y i l l member at home and the f a m i l y of the p s y c h i a t r i c p a t i e n t about to be di s c h a r g e d . D a v i s 1 study (1980), p r e v i o u s l y d i s c u s s e d , explored the o r g a n i z a t i o n a l p a t t e r n s o f 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 a t home. The data were obtained by means of s e m i - s t r u c t u r e d i n t e r v i e w s and were concerned p r i m a r i l y with the f a m i l y ' s decision-making process r e g a r d i n g keeping the i l l r e l a t i v e a t home. The i n t e r a c t i o n between f a m i l i e s and h o s p i t a l person-n e l i n d i c a t e d a d i f f e r e n t focus i n L e a v i t t ' s (1975) study. Using an u n s t r u c t u r e d method, the r e s e a r c h e r i n t e r v i e w e d 35 t h e f a m i l i e s o f f i r s t - a d m i s s i o n p a t i e n t s . The p u r p o s e o f h e r s t u d y was p r i m a r i l y t o d e t e r m i n e t h e "dominant i s s u e s and c o n c e r n s o f t h e f a m i l i e s " r e g a r d i n g t h e i m p e n d i n g d i s c h a r g e o f t h e i r r e l a t i v e f r o m a p s y c h i a t r i c h o s p i t a l . D u r i n g t h e i n t e r v i e w s , she a l s o d i s c u s s e d t h e f a m i l y ' s e x p e r i e n c e b e f o r e and d u r i n g t h e h o s p i t a l i z a t i o n . L e a v i t t ' s i n t e r v i e w s d i s c u s s e d t h e i m p e n d i n g d i s -c h a r g e b y i n c l u d i n g t h e a r e a s o f : 1) what h e l p e d t h e f a m i l y ; 2) what c o n c e r n s t h e y h a d ; 3) what t h e y l e a r n e d a b o u t m e n t a l i l l n e s s ; and 4) t h e i r a n t i c i p a t i o n o f t h e e f f e c t s o f t h e homecoming. The r e s u l t s o f t h e L e a v i t t s t u d y r e v e a l e d a l a c k o f a d e q u a t e i n t e r v e n t i o n w i t h f a m i l i e s , p a r t i c u l a r l y i n t h e a r e a o f p r e p a r a t i o n f o r d i s c h a r g e . Most f a m i l i e s d i d n o t v i e w t h e h o s p i t a l as h e l p f u l t o them, and t h e y m a i n t a i n e d t h e i r f e e l i n g s o f u n c e r t a i n t y and l a c k o f d i r e c t i o n t h r o u g h o u t t h e h o s p i t a l i z a t i o n . Such r e s u l t s seemed t o c l e a r l y i n d i c a t e t h e need f o r a c l o s e r e x a m i n a t i o n o f needs o f t h e f a m i l y , and t h e i d e n t i f i c a t i o n o f ways i n w h i c h s t a f f s h o u l d i n t e r v e n e t o h e l p them. The two s t u d i e s d i s c u s s e d i n t h i s s e c t i o n were o f f e r e d as r e p r e s e n t a t i v e o f t h e n u r s i n g r e s e a r c h t h a t h a s b e e n done t h u s f a r on t h e f a m i l y o f t h e p s y c h i a t r i c p a t i e n t . The r e s u l t s were d i s c u s s e d i n t e r m s o f t h e d i r e c t i o n t h e y gave f o r t h e p r e s e n t s t u d y . 36 SUMMARY T h i s c h a p t e r h a s r e v i e w e d r e l e v a n t r e s e a r c h on f a m i l i e s o f p s y c h i a t r i c p a t i e n t s , i n o r d e r t o p r o v i d e a b a c k g r o u n d f o r u n d e r s t a n d i n g t h e d e v e l o p m e n t o f t h i s s t u d y ' s p r o b l e m and p u r p o s e s . S i n c e few s t u d i e s were f o u n d by t h i s r e s e a r c h e r w h i c h d e a l t d i r e c t l y w i t h t h e h o s p i t a l i z a t i o n e x p e r i e n c e , o t h e r r e l a t e d a r e a s o f r e s e a r c h were a l s o r e v i e w e d f o r r e l e v a n c e t o t h i s t o p i c . The r e s e a r c h c o n c e r n i n g t h e i m p a c t o f p h y s i c a l i l l -n e s s was one s u c h a r e a . I l l u s t r a t i v e o f t h i s g r o u p were t h e two s t u d i e s by H o l l i n g s h e a d (1976) and Stember (19 7 7 ) , b o t h o f whom a t t e m p t e d t o e m p i r i c a l l y measure t h e i m p a c t o f " s e v e r e " i l l n e s s on s p e c i f i c f a m i l y members. The r e l a t i o n s h i p b etween t h e s e v e r i t y o f i l l n e s s and i t s i m p a c t was a m a j o r f o c u s o f b o t h o f t h e s e s t u d i e s . Sim-i l a r l y , s t u d i e s c o m p a r i n g p h y s i c a l and m e n t a l i l l n e s s ( D a v i s , 1980; Anth o n y , 1969) examined t h e e f f e c t o f t h e i l l n e s s on t h e f a m i l y ' s f u n c t i o n i n g . W h i l e t h e s e l a t t e r s t u d i e s d i d o f f e r some new i n f o r m a t i o n u s e f u l t o t h e p r e s e n t a r e a o f s t u d y , s e v e r a l i s s u e s were u n c l e a r . The d e f i n i t i o n o f "men t a l i l l n e s s " was u n c l e a r i n D a v i s ' s t u d y , and t h e g r o u p i n g o f p s y c h o s i s w i t h t u b e r c u l o s i s i n A n t h o n y ' s s t u d y i m p l i e d a s i m i l a r s o c i e t a l r e a c t i o n t o b o t h m e n t a l and p h y s i c a l i l l n e s s , an i m p o r t a n t i s s u e t h a t needs t o be c l a r i f i e d . An o v e r v i e w o f t h e r e s e a r c h b a s e d on p s y c h o a n a l y t i c 37 theory p r o v i d e d an h i s t o r i c a l p e r s p e c t i v e of r e s e a r c h with f a m i l i e s of p s y c h i a t r i c p a t i e n t s . Concerned mainly with the cause of s c h i z o p h r e n i a , s t u d i e s examined the f a m i l y f o r adverse f a c t o r s which c o n t r i b u t e d to the development o f t h i s p a r t i c u l a r mental i l l n e s s . The r e s e a r c h conducted w i t h i n the s o c i o l o g i a l p e r -s p e c t i v e was reviewed more e x t e n s i v e l y s i n c e i t seemed t o p r o v i d e more r e l e v a n t i n f o r m a t i o n about the e f f e c t of men-t a l i l l n e s s on r o l e s and 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 . I t was a g a i n apparent, however, t h a t even when the focus was on the f a m i l i e s ' p e r c e p t i o n s of the i l l n e s s and t h e i r methods of e x p l a i n i n g and coping with i t , the s t u d i e s concentrated on the i l l n e s s o n l y up t o the p o i n t of h o s p i t a l i z a t i o n or a f t e r d i s c h a r g e . Clausen and Yarrow (1955), f o r example, presented t h e i r f i n d i n g s on the w i f e ' s attempts t o e x p l a i n her husband's i l l n e s s with p h y s i c a l causes. An important c o n t r i b u t i o n made by s t u d i e s such as t h i s one, however, was t h e i r examination of the i s s u e of s t i g m a — a n i s s u e which w i l l be u s e f u l to c o n s i d e r when d i s c u s s i n g the data o f t h i s p r e s e n t study. Other r e s e a r c h e r s w i t h a s i m i l a r p e r s p e c t i v e reviewed other segments of the i l l n e s s experience. Lewis and Zeichner (1960) co n s i d e r e d f a m i l i a l r e a c t i o n s up to the p o i n t of h o s p i t a l i z a t i o n ; Freeman (1961) considered the f a m i l y a f t e r the p a t i e n t was d i s c h a r g e d , and Zwerling and Mendelsohn (1965) chose to c o n s i d e r the f a m i l y ' s r e a c t i o n t o day h o s p i t a l i z a t i o n . Other s t u d i e s which were 38 c o n s i d e r e d w i t h i n a g e n e r a l systems theory examined the f a m i l y as a u n i t r e a c t i n g to the i l l n e s s and h o s p i t a l -i z a t i o n . Attempts were made to i d e n t i f y "burdens" caused by the experience and the e f f e c t i v e n e s s o f v a r i o u s i n - p a t i e n t f a c i l i t i e s at r e l i e v i n g the "burden" exper-ienced by f a m i l i e s (Grad and Sainsbury, 1968). G e n e r a l l y these s t u d i e s showed a range of r e s u l t s : o b s e r v a t i o n s and i n t e r v i e w s were used to assess f a m i l i e s as " a c t i v e l y a c c e p t i n g " (Zwerling and Mendelsohn, 1965), or as having "sympathetic understanding" (Lewis and Zeichner, 1960) or " e n l i g h t e n e d a t t i t u d e s " (Freeman, 1961). V a r i a b l e s such as l e v e l of education, the r e l a t i o n s h i p to the p a t i e n t , the number and d u r a t i o n o f h o s p i t a l i z a t i o n s were examined to determine the r e l a t i o n s h i p to the f a m i l i e s ' a t t i t u d e s toward the p a t i e n t . A few s t u d i e s d i d s p e c i f i c a l l y examine the p e r i o d o f h o s p i t a l i z a t i o n i n r e l a t i o n to the f a m i l y , although t h e i r v a lue may be l i m i t e d i n terms of the era i n which they were conducted. For example, F l e c k ' s study of the e x p e r i -ence of f a m i l i e s o f p s y c h i a t r i c p a t i e n t s o f f e r e d some i n t e r e s t i n g data about the n e g ative r e a c t i o n s o f f a m i l i e s t o h o s p i t a l i z a t i o n — a n o b s e r v a t i o n t h a t needs t o be c l a r i f i e d i n terms of today's trends i n treatment and p o s s i b l e changes i n the s o c i e t a l r e a c t i o n to mental i l l n e s s . S i m i l a r l y , Rose i n t e r v i e w e d f a m i l i e s i n 1959, i n order to determine t h e i r a t t i t u d e toward the i l l n e s s and 39 h o s p i t a l i z a t i o n and the i n f l u e n c e t h i s a t t i t u d e had on the p a t i e n t and l e n g t h of h i s / h e r h o s p i t a l i z a t i o n . In c o n c l u s i o n , t h i s review o f l i t e r a t u r e has h i g h -l i g h t e d a major d e f i c i e n c y i n the r e s e a r c h o f the impact o f h o s p i t a l i z a t i o n on the f a m i l y ; the meaning of the h o s p i t a l i z a t i o n f o r f a m i l i e s has not been e l i c i t e d . When t h e i r p e r c e p t i o n s were sought, i t was i n terms o f t h e i r a t t i t u d e s toward mental i l l n e s s , or t h e i r coping methods b e f o r e or a f t e r the h o s p i t a l i z a t i o n p e r i o d . L i m i t e d e f f o r t s t o i d e n t i f y problems and concerns were evident, and were s u b j e c t e d to e m p i r i c a l measurement r a t h e r than a l l o w i n g the f a m i l i e s t o speak f o r themselves. A review o f n u r s i n g r e s e a r c h r e v e a l e d one study ( L e a v i t t , 1975) which focused on the f a m i l y ' s p e r c e p t i o n s of the discharge phase o f the h o s p i t a l i z a t i o n . T h i s study c l e a r l y took a step toward meeting the d e f i c i e n c y i n the r e s e a r c h thus f a r . I t i s hoped t h a t the present study, with i t s focus on f a m i l i e s ' p e r c e p t i o n s of other aspects o f the h o s p i t a l i z a t i o n experience w i l l f u r t h e r add to t h i s knowledge, and thus p r o v i d e d i r e c t i o n f o r nurses working with f a m i l i e s d u r i n g t h i s time. CHAPTER I I I METHODOLOGY As o u t l i n e d i n C h a p t e r I , t h e d e v e l o p m e n t o f t h e p u r p o s e s o f t h i s s t u d y was g u i d e d by t h e p h e n o m e n o l o g i c a l p e r s p e c t i v e . I n a p p l y i n g q u a l i t a t i v e m e t h o d o l o g y t o t h e c o l l e c t i o n and a n a l y s i s o f d a t a , t h i s r e s e a r c h e r was g u i d e d by t h e work o f o t h e r r e s e a r c h e r s who u s e d t h i s a p p r o a c h : Lindemann ( 1 9 7 4 ) , A n d e r s o n ( 1 9 8 1 ) , P o r t e r f i e l d ( 1 9 8 1 ) , and C i c o u r e l ( 1 9 6 8 ) . T h i s c h a p t e r w i l l d i s c u s s more s p e c i f i c a l l y how t h e q u a l i t a t i v e m e t h o d o l o g y was u t i l i z e d i n t h i s s t u d y . The c r i t e r i a and method o f s e l e c t i n g f a m i l i e s w i l l be o u t -l i n e d , t h e p r o c e s s o f s i m u l t a n e o u s d a t a c o l l e c t i o n and a n a l y s i s w i l l be d i s c u s s e d , and t h e n e c e s s a r y e t h i c a l c o n s i d e r a t i o n s i n v o l v i n g p a t i e n t s ' and f a m i l i e s ' r i g h t s w i l l be p r e s e n t e d . SELECTION OF W h i l e t h i s s t u d y was c o n f a m i l i e s o f p s y c h i a t r i c p a t i e i t was n e c e s s a r y t o d e l i n e a t e PARTICIPANTS c e r n e d w i t h t h e e x p e r i e n c e o f n t s d u r i n g h o s p i t a l i z a t i o n , t h e c r i t e r i a f o r s e l e c t i o n 40 41 p r i m a r i l y on the b a s i s o f the p a t i e n t s ' c h a r a c t e r i s t i c s , i n order t o ensure t h a t the s i t u a t i o n s experienced by the f a m i l i e s were s i m i l a r . For t h a t reason, the c r i t e r i a f o r s e l e c t i n g the p a t i e n t s , and subsequently the f a m i l y , w i l l now be presented and d i s c u s s e d . C r i t e r i a f o r S e l e c t i o n Based on the r e s e a r c h e r ' s o r i g i n a l i n t e r e s t and experience, i t was decided t o s e l e c t the f a m i l i e s of a d u l t p s y c h i a t r i c p a t i e n t s . T h e r e f o r e , eighteen was e s t a b l i s h e d as the minimum age f o r the p a t i e n t group. The second c r i t e r i o n f o r s e l e c t i o n was t h a t the h o s p i t a l i z a t i o n was the f i r s t admission of the p a t i e n t t o a p s y c h i a t r i c i n p a t i e n t f a c i l i t y . The r a t i o n a l e f o r such a c r i t e r i o n was to have as homogeneous a group as pos-s i b l e . I t was re c o g n i z e d t h a t some f a m i l i e s may have had p r e v i o u s s i m i l a r experiences w i t h o t h e r f a m i l y members, although as much as p o s s i b l e , such f a m i l i e s were not i n c l u d e d . In cases where such i n c l u s i o n o c c u r r e d , the e f f e c t of the p r i o r experience was addressed i n the i n t e r v i e w s and con s i d e r e d i n the data a n a l y s i s . T h i r d , the p e r i o d o f h o s p i t a l i z a t i o n was l i m i t e d t o fou r t o s i x weeks. Based on the r e s e a r c h e r ' s own c l i n i c a l experience with such p a t i e n t s , t h i s time p e r i o d was s e l e c t -ed as r e p r e s e n t a t i v e o f the average l e n g t h of stay f o r t h i s s e t t i n g . As such, the f a m i l i e s of these p a t i e n t s would l i k e l y encounter s i m i l a r events d u r i n g the h o s p i t a l i z a t i o n . 42 Fourth, the f a m i l i e s o f the p a t i e n t s were l i v i n g i n the Greater Vancouver area, which made c o n t a c t s by the r e s e a r c h e r f e a s i b l e and p r a c t i c a l . Another c r i t e r i o n was t h a t f a m i l i e s were E n g l i s h speaking o n l y . F i n a l l y , the p a t i e n t s were ab l e t o g i v e informed consent. Given the nature of the s e t t i n g , i t was f e l t t h a t i t was e t h i c a l l y necessary to i n c l u d e t h i s c r i t e r i o n . Although the p a t i e n t s were not i n c l u d e d i n the i n t e r v i e w s , they were d i s c u s s e d d u r i n g the i n t e r v i e w , t h e r e f o r e t h e i r consent was sought. I t i s important t o note t h a t there was no s p e c i f i c c r i t e r i o n based on the p a t i e n t ' s d i a g n o s i s s i n c e the emphasis was on the h o s p i t a l i z a t i o n experience o f the f a m i l y and not the s p e c i f i c i l l n e s s o f the p a t i e n t . S i m i l a r l y , t h e r e was no s p e c i f i c c r i t e r i o n f o r i d e n t i f y i n g f a m i l y members to be in t e r v i e w e d , other than i d e n t i f i c a -t i o n by p a t i e n t s o f t h e i r s i g n i f i c a n t o t h e r s . The r o l e o f the p a t i e n t i n the f a m i l y was a l s o not a c r i t e r i o n but was addressed i n the a n a l y s i s o f the da t a . S e l e c t i o n Procedure The r e s e a r c h was conducted i n a twenty bed p s y c h i -a t r i c u n i t i n a g e n e r a l h o s p i t a l i n downtown Vancouver and i n a u n i v e r s i t y p s y c h i a t r i c u n i t . I n i t i a l c o n t a c t with the p a t i e n t s was made d i r e c t l y by the r e s e a r c h e r , a f t e r r e c e i v i n g assurances from the p s y c h i a t r i s t t h a t the p a t i e n t c o u l d g i v e informed consent. The p a t i e n t s were 43 gi v e n a l e t t e r o f i n f o r m a t i o n and asked f o r pe r m i s s i o n f o r the r e s e a r c h e r t o approach t h e i r f a m i l i e s . When a p a t i e n t gave the r e s e a r c h e r w r i t t e n p e r m i s s i o n f o r the f a m i l y t o p a r t i c i p a t e , the f a m i l y was then con-t a c t e d e i t h e r i n person by the r e s e a r c h e r or by l e t t e r , g i v e n to them by a s t a f f member on the u n i t . In the l a t t e r case the l e t t e r , when signed, i n d i c a t e d t h e i r p er-m i s s i o n t o be contacted by phone. In both cases, the r e s e a r c h e r made arrangements with the f a m i l y to i n t e r v i e w them i n t h e i r home. The t i m i n g o f the i n i t i a l c o n t a c t and the f i r s t i n t e r v i e w v a r i e d , depending upon the p a t i e n t ' s a b i l i t y to g i v e informed consent, the frequency of v i s i t i n g by the f a m i l y (when the i n i t i a l c o n t a c t was made), and the a b i l i t y o f the re s e a r c h e r t o co n t a c t the p a t i e n t ' s p s y c h i a t r i s t . D e s c r i p t i o n of S e l e c t e d F a m i l i e s Although the re s e a r c h e r intended to i n t e r v i e w each f a m i l y as a group, i t happened i n the m a j o r i t y of cases t h a t i n t e r v i e w s were conducted with o n l y one f a m i l y member. There were s e v e r a l reasons f o r t h i s : 1) there was only one other f a m i l y member a v a i l a b l e f o r i n t e r v i e w s ; 2) sma l l c h i l d r e n were excluded, a t the wishes of the parents; 3) the p h y s i c a l l o c a t i o n o f v a r i o u s r e l a t i v e s ' homes made a s i n g l e , group i n t e r v i e w i m p o s s i b l e to arrange. T h e r e f o r e a l l persons i d e n t i f i e d by the p a t i e n t as " s i g n i f i c a n t o t h e r " were not always i n t e r v i e w e d . The 44 persons i n t e r v i e w e d , however, had been i d e n t i f i e d as such by the p a t i e n t . The r e l a t i o n s h i p s of f a m i l y members t o the p a t i e n t s v a r i e d . In two cases the f a m i l y members were wives. In two other f a m i l i e s , members were parents o f sons or daughters i n t h e i r e a r l y t w e n t i e s . One f a m i l y c o n s i s t e d o f s e v e r a l sons and daughters of a p a t i e n t who was 70 years o l d , and i n another case the f a m i l y member was the p a t i e n t ' s grandmother. One f a m i l y was Chinese, and the f a m i l y member who agreed to p a r t i c i p a t e , the p a t i e n t ' s s i s t e r , d i d so because she spoke f l u e n t E n g l i s h . Other f a m i l y members i d e n t i f i e d by the p a t i e n t had to be excluded because they spoke no E n g l i s h . In s e v e r a l f a m i l i e s t h e r e were c h i l d r e n under the age of ten, and they were excluded from the i n t e r v i e w s , a t the f a m i l i e s ' r e q u e s t s . Other p a t i e n t s i d e n t i f i e d f a m i l y members who had to be excluded f o r reasons o f l o c a t i o n or other commitments. L i v i n g arrangements i n the f a m i l i e s a l s o v a r i e d . In four of the f a m i l i e s the p a t i e n t l i v e d with the f a m i l y member i n t e r v i e w e d p r i o r t o h o s p i t a l i z a t i o n , w h i l e i n the remaining three f a m i l i e s , the p a t i e n t l i v e d alone, but had r e g u l a r c o n t a c t s with the f a m i l y members. The f a m i l i e s i n t e r v i e w e d a l s o represented a range of l o c a l e s and types o f accommodation, from apartment l i v i n g i n a densely populated area t o homes i n v a r i o u s p a r t s o f the c i t y and o u t l y i n g areas. 45 DATA COLLECTION Data were c o l l e c t e d by means o f taped i n t e r v i e w s conducted i n the f a m i l i e s ' homes. Two i n t e r v i e w s were conducted with each f a m i l y , one approximately one to two weeks a f t e r the p a t i e n t ' s admission t o h o s p i t a l , and the second j u s t p r i o r to the p a t i e n t ' d i s c h a r g e . Each i n t e r v i e w was approximately one hour i n d u r a t i o n . The i n t e r v i e w s were e s s e n t i a l l y u n s t r u c t u r e d , although the i n i t i a l i n t e r v i e w was guided by the review of the l i t e r a t u r e and the work of other r e s e a r c h e r s (see Appendix B). The content o f the second i n t e r v i e w was based upon the events t h a t o c c u r r e d subsequent to the f i r s t i n t e r v i e w , as w e l l as an a n a l y s i s of t h a t i n t e r v i e w . The use of the i n t e r v i e w guide v a r i e d among f a m i l i e s - i n one case i n p a r t i c u l a r , the f a m i l y spoke so f r e e l y t h a t the guide was not used u n t i l the second i n t e r v i e w . The purpose o f the f i r s t i n t e r v i e w , then, was to d i s c u s s the events l e a d i n g up t o and i n c l u d i n g admission. As w e l l , the f a m i l y ' s i n i t i a l p e r c e p t i o n s o f the h o s p i t a l environment were sought, as were t h e i r p e r c e p t i o n s o f the treatment r e c e i v e d by the p a t i e n t , and the e f f e c t o f h o s p i t a l i z a t i o n on t h e i r everyday l i v e s . The purpose of the second i n t e r v i e w was to c l a r i f y meanings of events d e s c r i b e d by the f a m i l y i n the f i r s t i n t e r v i e w , and to gather a d d i t i o n a l i n f o r m a t i o n as necessary. Given the nature of the methodology as d e s c r i b e d 4 6 p r e v i o u s l y , t h e r e s e a r c h e r d i d n o t a t t e m p t t o r e m a i n d e t a c h e d f r o m t h e i n t e r v i e w p r o c e s s . I n f a c t , t h e r e s e a r c h e r r e c o g n i z e d h e r own s u b j e c t i v e r e a c t i o n s and p o s s i b l e a s s u m p t i o n s and a t t e m p t e d t o c l a r i f y them w i t h i n t h e r e s e a r c h s i t u a t i o n . A l s o , t h e r e s e a r c h e r u t i l i z e d i n t e r v i e w t e c h n i q u e s l e a r n e d i n o t h e r n u r s i n g i n t e r v i e w i n g s i t u a t i o n s , w h i c h were d e s i g n e d t o h e l p t h e f a m i l y f e e l c o m f o r t a b l e and s a f e enough t o d i s c l o s e i n f o r m a t i o n t o t h e r e s e a r c h e r . C o n s t r u c t i o n o f A c c o u n t s I t i s i m p o r t a n t when u s i n g t h i s m e t h o d o l o g y t o i d e n t i f y c l e a r l y what c o n s t i t u t e s " d a t a , " and t o d i s c u s s c l e a r l y how t h e d a t a a r e " c o l l e c t e d . " As d e s c r i b e d i n C h a p t e r I , t h e q u a l i t a t i v e m e t h o d o l o g y u s e d h e r e was n o t i n p u r s u i t o f " f a c t s , " b u t r a t h e r aimed t o d e s c r i b e how t h e f a m i l i e s p e r c e i v e d e v e n t s i n t h e i r l i v e s and t h e m e a ning t h e y gave t o t h e s e e v e n t s . The p r o c e s s b y w h i c h t h e r e s e a r c h e r l e a r n e d f r o m t h e f a m i l i e s i n v o l v e d t h e c o n s t r u c t i o n o f a c c o u n t s . The a c c o u n t s o f t h e h o s p i t a l i z a t i o n e x p e r i e n c e were t h u s c o n s t r u c t e d by t h e a c t i v e i n v o l v e m e n t o f b o t h t h e f a m i l y members and t h e r e s e a r c h e r . T h e s e a c c o u n t s , t h u s c o n s t r u c t e d , become t h e d a t a o f t h e r e s e a r c h . The c o n s t r u c t i o n o f t h e a c c o u n t s by r e s e a r c h e r and f a m i l i e s was i n f l u e n c e d by many v a r i a b l e s , i n c l u d i n g p r i o r n o t i o n s and e x p e r i e n c e s o f b o t h . P a r t i c u l a r l y f o r t h e 47 r e s e a r c h e r who has worked i n the area under study, i t was necessary t o i d e n t i f y her own preconceived ideas and assumptions about the e f f e c t o f h o s p i t a l i z a t i o n on the f a m i l y . The accounts were a l s o i n f l u e n c e d by the f a m i l i e s ' n o t i o n s o f what was expected o f them. For example, one f a m i l y member s t a t e d when f i r s t c ontacted "I don't know how much I can h e l p you. T h i s r e a l l y hasn't been much o f a problem f o r me." Another f a m i l y member agreed to p a r t i c i p a t e "because we've a l l been t h e r e , " i n d i c a t i n g t h a t she understood a student's needs because she h e r s e l f had been a student. The degree of c o n f i d e n t i a l i t y was an i s s u e with some f a m i l i e s which a f f e c t e d how much they were w i l l i n g to share with the r e s e a r c h e r . For example, one f a m i l y admitted h e s i t a t i o n d u r i n g the i n i t i a l c o n t a c t , but l a t e r expressed g r a t i t u d e f o r the o p p o r t u n i t y to share f e e l i n g s i n complete c o n f i d e n c e . The a b i l i t y o f the r e s e a r c h e r t o i d e n t i f y words and phrases t h a t might have d i f f e r e n t meanings f o r f a m i l i e s , was one t h a t developed over time and t h e r e f o r e i n f l u e n c e d the q u a l i t y o f the i n t e r v i e w s . Consequently, the tendency of the r e s e a r c h e r i n e a r l y i n t e r v i e w s to assume shared meanings may have a f f e c t e d those accounts; i n subsequent i n t e r v i e w s the r e s e a r c h e r c l a r i f i e d such words or phrases with the f a m i l y . I n t e r e s t i n g l y , t h i s was a l s o an i n f l u e n c e f o r the f a m i l i e s , who assumed the r e s e a r c h e r "understood," 48 b e c a u s e o f t h e i r v i e w o f h e r as a n u r s e . DATA ANALYSIS As e a c h i n t e r v i e w was c o m p l e t e d i t was t r a n s c r i b e d by t h e r e s e a r c h e r . I t i s a c h a r a c t e r i s t i c o f t h i s method t h a t c o n s t a n t c o m p a r a t i v e a n a l y s i s o f t h e c o n t e n t o f e a c h i n t e r v i e w be c o n d u c t e d s i m u l t a n e o u s l y w i t h d a t a c o l l e c -t i o n . By u s i n g t h i s method, t h e r e s e a r c h e r was a b l e t o i d e n t i f y e m e r g i n g themes and c a t e g o r i e s , w h i c h t h e n i n f l u e n c e d s u b s e q u e n t i n t e r v i e w c o n t e n t . The c a t e g o r i e s t h u s d e v e l o p e d i n t h e a n a l y s i s were i n d i c a t i v e o f t h e f r e q u e n t l y o c c u r r i n g themes d i s c u s s e d by t h e f a m i l i e s d u r i n g t h e i n t e r v i e w s . The themes t h e r e f o r e were a r e a s w h i c h were i m p o r t a n t and m e a n i n g f u l f o r t h e f a m i l i e s t o d i s c u s s . ETHICAL CONSIDERATIONS The r i g h t s o f t h e p a t i e n t s and f a m i l i e s were p r o t e c t e d i n t h e f o l l o w i n g ways: The p a t i e n t s 1 r i g h t t o r e f u s e t h e i r f a m i l i e s ' p a r t i c -i p a t i o n was r e s p e c t e d by o b t a i n i n g t h e i r w r i t t e n c o n s e n t f i r s t . Competency t o g i v e c o n s e n t was a s s u r e d b y c o n s u l -t i n g t h e p s y c h i a t r i s t p r i o r t o a p p r o a c h i n g t h e p a t i e n t . 49 The p a t i e n t s were g i v e n e x p l a n a t i o n s of the study and the extent of involvement requested from the f a m i l i e s . They were asked t o i d e n t i f y t h e i r " s i g n i f i c a n t o t h e r s , " who were then approached by the r e s e a r c h e r . The nature of the study and d e t a i l s of t h e i r p a r t i c -i p a t i o n were then presented t o the f a m i l i e s p r i o r t o o b t a i n i n g consent. They were assured v e r b a l l y and i n w r i t i n g t h a t n o n - p a r t i c i p a t i o n would have no e f f e c t on the care t h a t they or the p a t i e n t r e c e i v e d . They were a l s o assured t h a t the data obtained d u r i n g the i n t e r v i e w s was c o n f i d e n t i a l , and t h a t no names were used on the tapes or any other r e c o r d o f the study. They were t o l d t h a t the tapes would be erased a f t e r the data were analysed and the t h e s i s and any s c h o l a r l y r e p o r t s were w r i t t e n . The s t a t u s o f the i n t e r v i e w e r as r e s e a r c h e r was r e i n f o r c e d p r i o r t o the i n t e r v i e w . During the i n t e r v i e w s , however, some f a m i l i e s requested h e l p from the re s e a r c h e r , and, i n one case, a s i t u a t i o n was d i s c u s s e d t h a t was judged by the r e s e a r c h e r t o be l i f e - t h r e a t e n i n g . The re s e a r c h e r was o b l i g a t e d to n o t i f y the s t a f f member i n v o l v e d with t h i s f a m i l y and/or p a t i e n t . In a n t i c i p a t i o n of such an occurrence, p e r m i s s i o n was sought from f a m i l i e s p r i o r to each i n t e r v i e w t o r e f e r t h e i r requests f o r h e l p to the a p p r o p r i a t e h e a l t h p r o f e s s i o n a l . The f a m i l i e s and the p a t i e n t s were informed t h a t t h e r e was no r i s k i n v o l v e d i n p a r t i c i p a t i n g . There were a l s o no f i n a n c i a l remunerations. Some f a m i l i e s d i d 50 b e n e f i t , however, i n t h a t they found i t h e l p f u l t o d i s c u s s t h e i r s i t u a t i o n with the r e s e a r c h e r . SUMMARY Thi s chapter has d e s c r i b e d the methodology used i n t h i s study. The c r i t e r i a f o r s e l e c t i n g the f a m i l i e s and the procedure used to c o n t a c t the f a m i l i e s v i a the agencies were o u t l i n e d . A d e s c r i p t i o n of the data c o l l e c t i o n process i n c l u d e d a d e f i n i t i o n of the purposes and content of the two i n t e r -views. The processes of c o n s t r u c t i n g accounts and a n a l y s i n g the data as they r e l a t e d t o the method of the study were d i s c u s s e d . F i n a l l y , the e t h i c a l c o n s i d e r a t i o n s and the r i g h t s of the f a m i l i e s were addressed. The next chapter w i l l p r e s e n t the accounts of the f a m i l i e s and the major conceptual c a t e g o r i e s t h a t were developed from these accounts. CHAPTER IV PRESENTATION OF ACCOUNTS T h i s c h a p t e r w i l l p r e s e n t t h e a c c o u n t s o f t h e f a m i l i e s ' e x p e r i e n c e s o f t h e i r r e l a t i v e s ' h o s p i t a l i z a -t i o n . The a c c o u n t s p r e s e n t e d w i l l show how f a m i l i e s u s e d t h e i r common-sense knowledge t o "make s e n s e o f " t h e o c c u r r i n g e v e n t s . The r e s e a r c h e r h a s b een g u i d e d b y t h e w r i t i n g o f C i c o u r e l , who e x p l a i n s t h a t " t h e t a s k i s t o i d e n t i f y what i s t y p i c a l , n o r m a l , and r o u t i n e f o r t h e a c t o r i n ' p r e p a r i n g ' t h e s c e n e , t h a t i s , i n t e r p r e t i n g what i s g o i n g on, what hap p e n e d , as w e l l as what a p p e a r s s t r a n g e , u n u s u a l , c r a z y o r t h e l i k e " ( 1 9 6 8 : 1 1 1 ) . The p u r p o s e s o f t h e s t u d y d i r e c t e d t h e r e s e a r c h e r t o p u r s u e s p e c i f i c a r e a s i n e l i c i t i n g t h e f a m i l i e s ' i n t e r -p r e t a t i o n s o f t h e e x p e r i e n c e : t h e i r p e r c e p t i o n s o f e v e n t s o c c u r r i n g p r i o r t o and d u r i n g t h e h o s p i t a l i z a t i o n ; t h e f a m i l i e s ' methods o f d e a l i n g w i t h o r "making s e n s e o f " c o n c e r n s t h e y e x p e r i e n c e d as a r e s u l t o f t h e s e e v e n t s ; and an i d e n t i f i c a t i o n o f what t h e y needed f r o m t h e h o s p i t a l p e r s o n n e l d u r i n g t h e h o s p i t a l i z a t i o n p e r i o d . An exam-i n a t i o n o f t h e d i s c u s s i o n o f t h e s e a r e a s h a s i d e n t i f i e d m a j o r themes o r c a t e g o r i e s w h i c h f o c u s on t h e s i m i l a r -i t i e s o f e x p e r i e n c e s among t h e f a m i l i e s . 51 52 The m a j o r c a t e g o r i e s d e v e l o p e d f r o m t h e a c c o u n t s i n c l u d e t h e e x a m i n a t i o n o f t h e p r o c e s s e s u t i l i z e d b y t h e f a m i l i e s i n "making s e n s e " o f t h e s e e v e n t s i n t h e i r l i v e s . P r o c e s s i n t h i s c o n t e x t i s meant t o c o n v e y t o t h e r e a d e r t h e n o n - l i n e a r movement o v e r t i m e o f t h e f a m i l i e s as t h e y were d e a l i n g w i t h t h e e x p e r i e n c e o f h o s p i t a l i z a t i o n . The f o l l o w i n g p r o c e s s e s h a v e b e e n i d e n t i f i e d w i t h i n a framework d e v e l o p e d by t h e r e s e a r c h e r t o r e f l e c t t h e s t u d y ' s p u r p o s e s : 1) a c c e p t i n g t h e h o s p i t a l i z a t i o n as a s o l u t i o n t o t h e p r o b l e m ; 2) a t t a c h i n g meaning t o t h e i l l n e s s and h o s p i t a l i z a t i o n ; 3) r e s t r u c t u r i n g t h e p a s t t o enhance u n d e r s t a n d i n g o f t h e p r e s e n t ; 4) a s s i m i l a t i n g t h e e x p e r i e n c e i n t o t h e d a i l y f u n c t i o n i n g o f t h e i r f a m i l y l i f e ; and 5) e x a m i n i n g t h e f u t u r e and d e a l i n g w i t h unknowns. W h i l e e a c h o f t h e s e p r o c e s s e s w i l l now be examined i n d i v i d u a l l y , t h e y a r e , i n f a c t , i n t e r t w i n e d and n o t d i s c r e t e . THE PROCESS OF ACCEPTING HOSPITALIZATION AS A SOLUTION I n o r d e r t o u n d e r s t a n d t h e d e c i s i o n t o seek h o s p i t a l -i z a t i o n as a s o u r c e o f h e l p o r a c c e p t i t as a p p r o p r i a t e , i t i s n e c e s s a r y t o p l a c e t h e h o s p i t a l i z a t i o n w i t h i n t h e c o n t e x t o f e v e n t s t h a t p r e c e d e d t h a t d e c i s i o n . W i t h o u t t h i s i t i s i m p o s s i b l e t o a p p r e c i a t e t h e p r o c e s s by w h i c h f a m i l i e s came t o a c c e p t h o s p i t a l i z a t i o n as a s o l u t i o n . The p r o c e s s w h i c h c u l m i n a t e d i n t h a t d e c i s i o n c a n be d e s c r i b e d as a s e q u e n c e o f b o t h c o g n i t i v e and e m o t i o n a l r e a c t i o n s t o t h e p a t i e n t ' s b e h a v i o u r . The s e q u e n c e i d e n t i f i e d f r o m t h e a c c o u n t s c o n s i s t e d o f : a) t h e g r o w i n g a w a r e n e s s t h a t s o m e t h i n g was "wrong" w i t h t h e p a t i e n t ; b) t h e e f f o r t s made t o s e e k h e l p f r o m o t h e r s o u r c e s ; c) t h e o c c u r r e n c e o f an e v e n t o r new b e h a v i o u r w h i c h r e s u l t e d i n t h e d e c i s i o n t o s eek o r a c c e p t h o s p i t a l z a t i o n . E a c h o f t h e s e s t e p s i n t h e p r o c e s s w i l l now be d i s c u s s e d i n more d e t a i l . F a m i l i e s d e s c r i b e d a g r o w i n g a w a r e n e s s f o r a l o n g p e r i o d o f t i m e p r i o r t o h o s p i t a l i z a t i o n — i n some c a s e s s e v e r a l y e a r s — t h a t s o m e t h i n g was "wrong," t h a t t h e p a t i e n t h a d "changed." T h i s change was s e e n as s t r e s s f u l f o r t h e f a m i l y . F o r e x a m p l e , t h e y d e s c r i b e d e f f o r t s t o i n c l u d e h i m o r h e r i n f a m i l y a c t i v i t i e s o r o u t i n g s : F: I d i d n ' t t h i n k i t was n o r m a l when, ev e n h i s f a t h e r w o u l d ask h i m t o come f o r a weekend o r f o r d i n n e r and r i g h t up u n t i l t h e day t h e d i n n e r was he w o u l d s a y y e s , b u t -R: He w o u l d change h i s mind? So you f e e l he was u n p r e d i c t a b l e ? F: Hm,hm. W e l l , i t g o t so e v e r y one j u s t s t o p p e d a s k i n g h i m t o go anywhere - e v e n m y s e l f , I w o u l d n ' t ask h i m . T h e i r e x p e c t a t i o n s o f " n o r m a l " b e h a v i o u r , and t h e f a i l u r e o f t h e p a t i e n t t o c o n f o r m t o n o r m a l s t a n d a r d s were d e s c r i b e d i n e m o t i o n a l t e r m s . F a m i l i e s i d e n t i f i e d f e e l i n g s o f a n g e r , d i s a p p o i n t m e n t , o r i m p a t i e n c e . E v e n t -u a l l y t h e f a m i l i e s r e s i g n e d t h e m s e l v e s t o l i v i n g w i t h t h e 54 p a t i e n t t h i s way: R: So t h e r e was some r e a l d i s r u p t i o n , I guess, i n your d a i l y l i v e s , as a r e s u l t of ( p a t i e n t ) being here? F: I wouldn't e x a c t l y c a l l i t a d i s r u p t i o n , i t was r a t h e r a - something we f e l t e m o t i o n a l l y , I sup-pose, without being a l e r t about i t ; but there i s a k i n d o f c o n t i n u i n g disappointment when she won't communicate with us a t a l l . E f f o r t s t o seek h e l p other than h o s p i t a l i z a t i o n were made, as f a m i l i e s began to i n t e r p r e t behaviours as "unus-u a l " or "not normal." Neighbourhood c l i n i c s or f a m i l y d o c t o r s were approached but most f a m i l i e s d e s c r i b e d these c o n t a c t s as b r i e f and u n s a t i s f a c t o r y . The t i m i n g o f the d e c i s i o n t o accept h o s p i t a l i z a t i o n as a source o f h e l p was u s u a l l y determined by the occurrence o f an event, prev-i o u s l y not experienced, and d e s c r i b e d by s e v e r a l f a m i l i e s as a " c r i s i s , " and by one as a "traumatic episode," i n d i c a t i n g t h a t i t was an e m o t i o n a l l y charged event. The occurrence o f such events thus l e d the f a m i l y t o r e d e f i n e behaviour not witnessed b e f o r e i n the p a t i e n t as " u n p r e d i c t a b l e , " "out of c o n t r o l , " or "couldn't be t r u s t e d , " a l l of which l e f t the f a m i l y f e e l i n g h e l p l e s s . The emergence of behaviour p e r c e i v e d as " b i z a r r e " i n the s c h i z o p h r e n i c p a t i e n t , the sudden o c c u r r e n c e . o f a "panic a t t a c k " by a depressed daughter, are examples o f events or b e h a v i o u r a l d i s t u r b a n c e s which became a c r i s i s f o r the f a m i l y and which s i g n a l e d a need f o r a c t i o n : 55 F: I d i d n ' t r e a l i z e she was h a v i n g t h e s e p a n i c a t t a c k s , 'cause I h a d n ' t s e e n h e r and t h e y were s o m e t h i n g c o m p l e t e l y new t o me. R: So you h a v e n ' t a t a l l s e e n h e r when s h e ' s f e e l i n g p a n i c k y ? F: O n l y t h e n i g h t t h a t we t o o k h e r t o t h e h o s p i t a l . R: Can y o u t e l l me a b o u t t h a t ? F: W e l l , I c o u l d n ' t s e t t l e h e r down, I mean, i t was j u s t v e r y h a r d t o t a l k t o h e r , she was c r y i n g and f r i g h t e n e d and we d i d n ' t know what-we j u s t d i d n ' t know how t o h e l p . I n t h r e e c a s e s , t h e h o s p i t a l i z a t i o n was p r e c i p i t a t e d by s u i c i d e a t t e m p t s : i n t h e s e f a m i l i e s t h i s was a l s o a s i g n a l t h a t s o m e t h i n g was wrong. A l t h o u g h t h e d e c i s i o n s were n o t t h e f a m i l i e s ' , t h e y a c c e p t e d i t as a p p r o p r i a t e . The f a m i l i e s e x p e r i e n c e d s h o c k and d i s b e l i e f t h a t t h e p a t i e n t w o u l d b e h a v e i n s u c h a way, and r e l i e f t h a t he o r she h a d n o t s u c c e e d e d i n c o m m i t t i n g s u i c i d e . A t t h e same t i m e , however, t h e y h a d s i m i l a r f e e l i n g s r e g a r d i n g t h e b e h a v i o u r o f t h e p a t i e n t p r i o r t o t h e s u i c i d e a t t e m p t ; t h e y f e l t t h a t s o m e t h i n g was " n o t n o r m a l " . H o s p i t a l i z a t i o n t h u s became a way o f a c k n o w l e d g i n g t h a t t h e y c o u l d no l o n g e r c o p e , a t l e a s t n o t w i t h t h e c r i s i s t h a t d e v e l o p e d i m m e d i a t e l y b e f o r e a d m i s s i o n . Most f a m i l i e s were e a s i l y a b l e t o s t a t e t h i s . They a d m i t t e d t h a t t h e y c o u l d n o t c o p e , and a l s o t h a t t h e y were r e l i e v e d t h a t someone e l s e was t a k i n g o v e r . I n s e v e r a l c a s e s t h e y were q u i t e i n s i s t e n t t h a t t h i s o c c u r : "I j u s t t o o k t h e 56 phone and s a i d , 'Would you se n d somebody f o r him. I d o n ' t t h i n k we c a n t a k e many more d a y s o f t h i s . ' " I t was n o t a d e c i s i o n t h a t was made l i g h t l y ; h o s p i t -a l s s y m b o l i z e d s i c k n e s s t o t h e f a m i l i e s . T h e r e f o r e , s e n d i n g t h e p a t i e n t t o h o s p i t a l a c k n o w l e d g e d t h a t t h e p a t i e n t was s i c k , and was u n a b l e t o g e t w e l l w i t h o u t p r o f e s s i o n a l h e l p . F a m i l i e s r e d e f i n e d b e h a v i o u r s as "symptoms" o f s i c k n e s s and e x p e c t e d t h a t t h e h o s p i t a l w o u l d t r e a t " t h e p r o b l e m " . T h i s p r o c e s s o f a c c e p t i n g h o s p i t a l i z a t i o n as a p p r o -p r i a t e f o r t h e p a t i e n t h a s b e e n d e s c r i b e d as a s e q u e n c e o f e v e n t s — f r o m a g r o w i n g a w a r e n e s s t h a t s o m e t h i n g was wrong t o t h e o c c u r r e n c e o f a c r i s i s w h i c h r e s u l t e d i n t h e d e c i -s i o n t o h o s p i t a l i z e t h e p a t i e n t . F a m i l i e s were t h e n f a c e d w i t h i n t e r p r e t i n g e v e n t s s u r r o u n d i n g t h e t r e a t m e n t , as w e l l as w i t h e x a m i n i n g t h e i r own n o t i o n s o f m e n t a l i l l -n e s s . The f o l l o w i n g d i s c u s s i o n w i l l c o v e r t h e p r o c e s s by w h i c h t h e meaning o f m e n t a l i l l n e s s and t r e a t m e n t d e v e l -oped f o r t h e f a m i l i e s . The i m p o r t a n c e o f p r i o r n o t i o n s a b o u t p s y c h i a t r i c and g e n e r a l h o s p i t a l s a s w e l l as t h e e f f e c t s o f s t i g m a w i l l a l s o be d i s c u s s e d . THE MEANING ATTACHED TO ILLNESS AND TREATMENT The p r o c e s s b y w h i c h f a m i l i e s a t t a c h e d meaning t o t h e 57 h o s p i t a l i z a t i o n i n v o l v e d an i n t e g r a t i o n o f many f a c t o r s : a r t i c u l a t i n g t h e i r e x p e c t a t i o n s o f what w o u l d happen, a c c e p t i n g o r r e j e c t i n g what t h e y o b s e r v e d , and e v a l u a t i n g e v e n t s t h a t o c c u r r e d a f t e r a d m i s s i o n . The p r o c e s s a l s o i n v o l v e d c o m p a r i n g p s y c h i a t r i c h o s p i t a l s t o o t h e r h o s p i t -a l s , and t h e n c o m p a r i n g t h e t r e a t m e n t o f p h y s i c a l i l l n e s s t o t h e t r e a t m e n t o f m e n t a l i l l n e s s . P r i o r n o t i o n s , b a s e d on f o l k l o r e o r a c t u a l e x p e r i e n c e , i n f l u e n c e d t h e i r e x p e c -t a t i o n s as w e l l as t h e i r e v a l u a t i o n s . F i n a l l y , t h e i r p e r c e p t i o n o f s t i g m a was a m a j o r f a c t o r i n t h e p r o c e s s o f a p p l y i n g meaning t o t h e i l l n e s s o f t h e i r r e l a t i v e . T h e s e f a c t o r s and t h e i r i n t e r - r e l a t i o n s h i p s w i l l now be d i s c u s s e d . The c o m p a r i s o n s t h a t f a m i l i e s made i n d e v e l o p i n g meaning f o r t h e i r p r e s e n t e x p e r i e n c e were b a s e d on p r i o r e x p e r i e n c e w i t h g e n e r a l h o s p i t a l s , e x p o s u r e t o p s y c h i a t r i c h o s p i t a l s t h r o u g h work o r p e r s o n a l e x p e r i e n c e , o r assump-t i o n s f o r m e d f r o m p u b l i c m edia s o u r c e s . One f a m i l y member who h a d h a d p r i o r e x p o s u r e t o m e d i c a l t r e a t m e n t u s e d t h e s e e x p e r i e n c e s t o e v a l u a t e h i s i n i t i a l c o n t a c t s w i t h t h e h o s p i t a l and i t s p e r s o n n e l : F: When a p e r s o n h a s a ... goes i n t o a h o s p i t a l ward urn, h a s an a c c i d e n t i n a c a r , goes i n t o a h o s p i t a l and t h e y ' r e g o i n g t o do c e r t a i n t h i n g s , t h e r e ' s a p u n c t u r e d l u n g and t h e r e ' s t h i s and t h e r e ' s t h a t , t h e y t a k e y o u a s i d e and t h e y s a y, now t h i s i s what t h e s i t u a t i o n i s and t h i s i s what we 1 r e g o i n g t o do ... 58 He went on t o d e s c r i b e how he wanted and expected t h i s k i n d of i n f o r m a t i o n r e g a r d i n g h i s r e l a t i v e ' s s i t u a t i o n , and d i d not r e c e i v e i t . S e v e r a l other f a m i l i e s i d e n t i f i e d major d i f f e r e n c e s between p h y s i c a l and p s y c h i a t r i c i l l n e s s e s and treatment. Because the problem was not a t a n g i b l e one ( " i t ' s not l i k e a broken leg") which has a standard form o f treatment, i t was more d i f f i c u l t f o r them to understand the p r e s c r i b e d treatment. As w e l l , there were more quest i o n s about t h e i r own involvement. The importance o f preconceived not i o n s i n d e f i n i n g the meaning of p s y c h i a t r i c i l l n e s s and treatment became evident when f a m i l i e s d e s c r i b e d t h e i r i n i t i a l r e a c t i o n s to the h o s p i t a l i t s e l f : F: L i k e I say, I had always the i d e a t h a t maybe t h a t i s an insane, uh, how do c a l l - i t ? an asylum? R: W e l l , i t s a, such a new experience .. F: Yeah ... no, i t was not l i k e t h a t , the p i c t u r e I had i n my mind, the b a r s , and the k i n d of, the whole i s locked, you know, so nobody can escape, something l i k e t h a t . Such n o t i o n s o f p s y c h i a t r i c h o s p i t a l s r e s u l t e d i n f e e l i n g s of g u i l t f o r having p a r t i c i p a t e d i n b r i n g i n g about the h o s p i t a l i z a t i o n . The source of g u i l t i n some cases was the a c t u a l p a t i e n t . In one case the p a t i e n t a c t u a l l y v e r b a l i z e d h i s blame t o the f a m i l y f o r having him admit-t e d . In other cases g u i l t o r i g i n a t e d i n p e r c e i v e d s o c i e t a l 59 r e a c t i o n s t o t h e m e n t a l i l l n e s s o r a s s u m p t i o n s a b o u t p s y c h i a t r i c i l l n e s s . In t h e above example, t h e f a m i l y member f e l t o t h e r s w o u l d s h a r e h e r v i e w o f t h e h o s p i t a l as an " a s y l u m . " F a m i l i e s , t h e r e f o r e , h a d d i f f i c u l t y i n d e t e r m i n i n g an a c c e p t a b l e meaning o f m e n t a l i l l n e s s . They were a t t e m p t i n g t o a p p l y t h e i r u n d e r s t a n d i n g o f g e n e r a l h o s p i t a l s , b u t a t t h e same t i m e were e x p e r i e n c i n g g u i l t and e m b a r r a s s m e n t b e c a u s e i t was a p s y c h i a t r i c h o s p i t a l . They seemed t o p a r t i a l l y r e s o l v e t h i s dilemma by o b s e r v i n g and e v a l u a t i n g t h e p a t i e n t ' s p r o g r e s s : R: The f i r s t t i m e you went t o v i s i t him, d i d y o u e x p e c t h i m t o be t h e same, o r ...? F: I d i d n ' t know what t o e x p e c t , and I was q u i t e p l e a s e d i n what I f o u n d . He seemed q u i t e h a p p y t o be t h e r e and I was r e l i e v e d . T h e s e o b s e r v a t i o n s c o n t r i b u t e d t o t h e c h a n g i n g meaning o f e v e n t s . The f a m i l i e s e x p e r i e n c e d r e l i e f t h a t " t h e r i g h t d e c i s i o n " h a d b e e n made. The h o s p i t a l c o u l d be d e f i n e d as a p l a c e t h a t h e l p e d t h o s e who were " s i c k . " The i m p o r t a n c e o f t h e f a m i l i e s ' p e r c e p t i o n s o f s t i g m a i n d e v e l o p i n g t h e i r meaning o f m e n t a l i l l n e s s , became e v i d e n t when t h e y e x p r e s s e d a need t o "keep i t t o them-s e l v e s . " T h e r e was a r e l u c t a n c e t o s h a r e w i t h n e i g h b o u r s b e c a u s e t h e y w o u l d n o t u n d e r s t a n d : F: I t w o u l d n ' t h e l p W., i t w o u l d n ' t h e l p me, b e c a u s e t h e y ' r e t h e t y p e t h a t w o u l d make g r e a t b i g d a r n f u s s and n o t h i n g b e h i n d i t ; y o u o n l y t a l k on t h e s e t h i n g s t o p e o p l e who u n d e r s t a n d you maybe, o r who h a v e some f e e l i n g s f o r y o u . 60 S i m i l a r l y , another f a m i l y d e s c r i b e d : R: They're aware t h a t she's i n h o s p i t a l ? F: Yes, and t h a t , l i k e my daughter-in-law says, "Well, I don't know what you say to her. I'm not used to being around something l i k e t h i s . " So, t h a t ' s hard, I wish there was some way t h a t uh, I c o u l d t e l l her, you know, but i t ' s l i k e you have l e p r o s y or something, and I f i n d t h a t happens even with my f r i e n d s . R: Have you been ab l e to t a l k to your f r i e n d s about i t ? F: No. Not a t a l l . R: They're aware t h a t ( p a t i e n t ) i s i n h o s p i t a l ? F: No. One of my f r i e n d s , she s o r t of has had r e l a t i v e s i n p s y c h i a t r i c h o s p i t a l s too and she knows what i t ' s l i k e , but I've a l s o found t h a t she's p u t t i n g d i s t a n c e between her and myself. Questions t h a t o u t s i d e r s asked the f a m i l i e s r e g a r d i n g the p a t i e n t ' s absence were g e n e r a l l y met with vague responses such as "He's i n f o r t e s t s , " presumably because medical treatments were more a c c e p t a b l e . In one case, where an ambulance was r e q u i r e d and p o l i c e were needed to take the p a t i e n t i n to h o s p i t a l , the f a m i l y expressed embarrass-ment t h a t neighbours observed t h i s s i t u a t i o n . The f a m i l i e s ' p e r c e p t i o n s r e g a r d i n g the r e a c t i o n s of o t h e r s to mental i l l n e s s a f f e c t e d the kinds of supports they sought. They began d e f i n i n g the s i t u a t i o n as one t h a t was d e a l t w i t h alone, or with s e l e c t e d people. For example, one f a m i l y member r e l i e d on a n i e c e f o r i n f o r m a t i o n , because "she was i n the b u s i n e s s . " Another 61 was able to c o n f i d e i n co-workers, because she f e l t they shared a s i m i l a r background and would t h e r e f o r e understand. The f a m i l i e s ' d e c i s i o n s about how f r e e l y they c o u l d d i s c u s s t h e i r r e l a t i v e ' s h o s p i t a l i z a t i o n a l s o depended upon t h e i r concern f o r the wishes o f the p a t i e n t , as they ( f a m i l y members) p e r c e i v e d them: "Behind i t too, i s some q u e s t i o n o f whether ( p a t i e n t ) would want us to t a l k t o other people about i t . " The e f f e c t o f such stigma r e g a r d i n g mental i l l n e s s was embarrassment f o r f a m i l i e s , as w e l l as an i n c r e a s e d r e l i a n c e on c l o s e f a m i l y members o n l y f o r support. The process o f dev e l o p i n g meaning t h e r e f o r e i n v o l v e d e v a l u a t i n g the s i g n i f i c a n c e o f p r i o r experience and know-ledge t o the prese n t s i t u a t i o n , and e v a l u a t i n g the a p p l i -c a b i l i t y o f p r i o r n o t i o n s of p s y c h i a t r i c h o s p i t a l s to t h e i r own s i t u a t i o n . The impact o f the f a m i l i e s ' experience o f stigma on the meaning of h o s p i t a l i z a t i o n was a l s o e v i d e n t . While they might be able to come to accept the h o s p i t a l as h e l p f u l t o the p a t i e n t who was s i c k , they a l s o came to d e f i n e i t as a " p r i v a t e " e xperience. The process o f a t t a c h i n g meaning to the i l l n e s s both i n f l u e n c e d and was i n f l u e n c e d by the ways i n which f a m i l i e s examined past events and the p e r c e i v e d importance o f these events t o the development of the i l l n e s s . That process o f re-examining the pas t i n terms o f the meaning of mental i l l n e s s w i l l now be examined. 62 RESTRUCTURING THE PAST: THE PROCESS OF UNDERSTANDING The r e s e a r c h e r ' s i n t e r e s t and t h e f o c u s o f t h e i n t e r v i e w s c e n t e r e d on t h e p e r i o d o f t i m e c o v e r e d by t h e h o s p i t a l i z a t i o n e p i s o d e . I n s p i t e o f t h i s , most f a m i l i e s seemed t o h a v e a need t o d i s c u s s and e v a l u a t e , i n r e t r o -s p e c t , e v e n t s and i n t e r a c t i o n s b e t w e e n t h e m s e l v e s and t h e p a t i e n t t h a t o c c u r r e d p r i o r t o t h e h o s p i t a l i z a t i o n and t o r e c o n s t r u c t t h e s e e v e n t s i n t e r m s o f t h e p r e s e n t e x p e r -i e n c e . The p r o c e s s o f u n d e r s t a n d i n g i n v o l v e d r e f r a m i n g s p e c i f i c e v e n t s i n t h e p a s t , and e x a m i n i n g t h e i r own and t h e p a t i e n t ' s c o n t r i b u t i o n t o t h e d e v e l o p m e n t o f t h e p r o b l e m . T h e i r a t t e m p t s t o u n d e r s t a n d t h e i l l n e s s t h u s i n v o l v e d an a s s e s s m e n t o f t h e m s e l v e s and t h e p a t i e n t , a s t h e y s h a r e d and c o n t i n u e d t o s h a r e t h e r e s p o n s i b i l i t y f o r what h a d o c c u r r e d . The c o n c e p t o f r e f r a m i n g as us e d i n t h i s c o n t e x t w i l l now be ex a m i n e d . R e f r a m i n g : A d d i n g M e a n i n g t o S p e c i f i c E v e n t s Most f a m i l i e s m e n t i o n e d s p e c i f i c e v e n t s i n t h e f a m i l y ' s h i s t o r y a s s i g n i f i c a n t f a c t o r s , t h a t may h a v e c o n t r i b u t e d t o t h e p a t i e n t ' s i l l n e s s . E v e n t s s u c h as moving, a t t e m p t i n g t o f i n d a j o b , o r a m a r r i a g e b r e a k u p were examined as p o s s i b l e s t r e s s e s w h i c h c o u l d h a v e c a u s e d t h e p r o b l e m . The ways i n w h i c h t h e p a t i e n t ' s e n v i r o n m e n t was d i f f e r e n t f r o m t h a t o f o t h e r s was examined by some f a m i l i e s , w h i l e o t h e r s p o i n t e d t o t h e d i f f e r e n c e s i n t h e 63 p a t i e n t ' s p e r s o n a l i t y from the norm. I t was not c l e a r how much o f t h i s k i n d of i n t r o -s p e c t i o n took p l a c e d u r i n g the h o s p i t a l i z a t i o n p e r i o d , but i t would seem t h a t i t became a major a c t i v i t y , once the p a t i e n t was i n h o s p i t a l . As one f a m i l y member put i t : "I j u s t s o r t of l e t i t coast along." There seemed to be a tendency to r a t i o n a l i z e the behaviour p r i o r to h o s p i t a l -i z a t i o n , which subsequently became reframed a f t e r admis-s i o n . T h i s l a t t e r a t t i t u d e i s e x e m p l i f i e d by the term-i n o l o g y used to d e s c r i b e the p a t i e n t p r i o r to h o s p i t a l -i z a t i o n : R: So you e x p l a i n e d t h a t he was having problems? F: Yeah, w e l l , I, they had known pr e v i o u s to t h a t ... t h a t uh, I was having a problem with him not wanting to go out and ... I guess the whole f a m i l y were p u t t i n g q u i t e a b i t of p r e s s u r e on him t o f i n d work. Such behaviour was r e d e f i n e d by f a m i l i e s as s i g n i f i c a n t , g i v e n the p r e s e n t circumstances. F a m i l i e s a l s o examined the s i g n i f i c a n c e of the p a t i e n t ' s p e r s o n a l i t y : the p e r c e i v e d d i f f e r e n c e s compared to other f a m i l y members, and the behaviours which had been accepted as h a b i t s o f l o n g - s t a n d i n g d u r a t i o n . The purposes o f these d i s c u s s i o n s ranged from suggesting other p o s s i b l e e x p l a n a t i o n s , to merely d e s c r i b i n g symptoms noted p r i o r to h o s p i t a l i z a t i o n , or e x p l a i n i n g the p a t i e n t ' s unique response to treatment: "He's never been one t o open up and 64 f i n d t h i n g s f o r h i m s e l f . " S i m i l a r l y , a n o t h e r f a m i l y d e s c r i b e d i t t h i s way: R: Can y o u p i n p o i n t what m i g h t be t h e c a u s e o f h e r b e h a v i o u r ? F: Her w i t h d r a w i n g f r o m t h e f a m i l y ? R: Hm, Hm. F: ... h a s a l w a y s b e e n r e a l q u i e t and n o t v e r y o u t g o i n g p e r s o n ... A n o t h e r common r e s p o n s e by f a m i l i e s as t h e y e v a l u a t e d t h e p a s t was t h e i r r e d e f i n i t i o n o r r e f r a m i n g o f p r e v i o u s n o t i o n s o f t h e p a t i e n t t o f i t new v i e w s o f h i m o r h e r as b e i n g " s i c k . " T h e s e d i f f e r e n c e s c a n be s e e n t h r o u g h c o m p a r i s o n s : F: I d o n ' t u n d e r s t a n d uh, h e r p r o b l e m s . They may be a s s o c i a t e d w i t h t h i n g s w h i c h seem v e r y l i g h t t o me, b u t a r e v e r y s e r i o u s t o h e r . The f a c t t h a t she i s g e t t i n g o l d e r , f o r example, s h e ' s a t an age when o t h e r c h i l d r e n were o u t o f c o l l e g e , and s h e ' s s t i l l n o t , h a s n ' t c o m p l e t e d h e r s t u d i e s . A n o t h e r f a m i l y compared t h e p a t i e n t t h i s way: F: From t i m e t h a t he was v e r y , v e r y young, he was k i n d o f — n o t d i f f e r e n t — b u t , um, h i s temperament was d i f f e r e n t t h a n t h e two o l d e r o n e s . As p a s t e v e n t s were r e d e f i n e d as s i g n i f i c a n t , t h e e f f e c t i v e n e s s o f t h e t r e a t m e n t r e g i m e i n a d d r e s s i n g them was a l s o e v a l u a t e d . Some f a m i l i e s e n c o u r a g e d p a t i e n t s t o " t a l k a b o u t i t . " One f a m i l y member, f o r example, a c c e p t e d h e r p h y s i c i a n ' s s t a t e m e n t t h a t t h e p a t i e n t s h o u l d d i s c u s s 65 the past, and i n f a c t agreed t h a t t h i s i s what f i n a l l y h e lped him: R: What p a r t o f h i s treatment has helped? F: W e l l , the t a l k i n g . In the begin n i n g he was q u i t e , you know, he d i d n ' t want t o p a r t i c i p a t e i n the group s e s s i o n s , because he t h o u g h t — t h e t h i n g s — he c o u l d n ' t t e l l t h i n g s . On the other hand, another f a m i l y who had a d i f f e r e n t knowledge base due to p r o f e s s i o n a l experience, was not as ready t o accept such d i s c u s s i o n s : "I'm not r e a l l y i n t e r -ested i n g e t t i n g i n t o our sexual or m a r i t a l t h i n g s , or, you know, going i n t o f a m i l y background. That's not what he's t h e r e f o r . " F a m i l i e s thus agreed or d i s a g r e e d with the therapy, depending upon how congruent they f e l t i t was with t h e i r own e v a l u a t i o n o f the problem and t h e i r knowledge of what the p a t i e n t was l i k e . One f a m i l y d i s c o u n t e d the meaning atta c h e d to the p a t i e n t ' s p a r t i c i p a t i o n i n group therapy because i t was out o f con t e x t : " I t wasn't as meaningful as they thought, because they don't know what h i s home l i f e i s and how he i s a t home." S e v e r a l f a m i l i e s d e s c r i b e d the p a t i e n t s as p r i v a t e i n d i v i d u a l s who d i d not e a s i l y share with o t h e r s . These f a m i l i e s were concerned about the e f f e c t o f group therapy on t h e i r r e l a t i v e . As one f a m i l y member s t a t e d : "I thought they would probably have more i n d i v i d u a l d i s c u s s i o n s , to see i f they c o u l d n ' t get to the bottom of 66 t h i n g s . " Ambivalence experienced i n r e d e f i n i n g p a t i e n t behav-i o u r s was e v i d e n t . While they accepted the behaviours as symptomatic o f i l l n e s s , they a l s o attempted to e x p l a i n them as j u s t "the p a t i e n t ' s p e r s o n a l i t y " . The Process o f S e l f - E v a l u a t i o n In the process of r e d e f i n i n g the meaning of past events, the f a m i l i e s a l s o examined and r e - e v a l u a t e d the importance of t h e i r own behaviour. They evaluated the ways they had i n t e r a c t e d with the p a t i e n t , and r e d e f i n e d them as p o s s i b l e c o n t r i b u t e r s to the problem: "I am too l e n i e n t w i t h him...I j u s t f e e l t h a t he and I don't get along very w e l l , and I'm probably a l o t o f the cause of h i s problems." Other f a m i l i e s q u e r i e d the e f f e c t of t h e i r i n t e r a c t i o n s : F: We weren't comfortable or very happy with o u r s e l v e s most of the time and she s o r t o f got the bulk o f t h a t . I t h i n k t h a t i s p a r t of i t , although I don't - I was s o r t o f f e e l i n g t h a t she had come to terms with t h a t . The p o s i t i o n o f b eing too a c c e p t i n g of the p a t i e n t and h i s or her p a s t behaviour was a l s o mentioned. F e e l i n g s of remorse were e v i d e n t t h a t perhaps a t the time they were not aware of what they c o u l d have done: F: I would have been happy f o r him to have got h i m s e l f where he c o u l d get married a while back; he probably never would have gone i n t o t h i s , a t the same token I c o u l d n ' t push him out. I encouraged him to look f o r work, and do t h i s and t h a t . . . t r i e d t o , but I c o u l d n ' t say, you got to 67 get out...So you see, I'm a t f a u l t too, I know, but what do you do, how do you handle t h i n g s ? S i m i l a r l y , another f a m i l y examined the p a t i e n t ' s past r e l a t i o n s h i p s with the f a m i l y by s t a t i n g : F: She, I t h i n k , does not f e e l p a r t o f our f a m i l y . I don't know how t h a t happened, we're not conscious of having t r e a t e d her d i f f e r e n t l y . One f a m i l y member seemed more concerned about her behaviour j u s t p r i o r to h o s p i t a l i z a t i o n and her a b i l i t y t o cope. "Mainly a t t h a t p o i n t i t seemed to be both our problem. I c e r t a i n l y a t t h a t p o i n t wasn't hanging i n there too t i g h t e i t h e r . " Another f a m i l y member c l e a r l y s t a t e d t h a t he f e l t no remorse: " i f ( p a t i e n t ) had d i e d t h a t n i g h t , I would have had a c l e a r c onscience about my own p a r t i n h i s l a t t e r l i f e , p a r t l y because I was doing a l l I c o u l d . " T h i s same f a m i l y , however, r e l a t e d t h e i r process of q u e s t i o n i n g themselves about "whether we c o u l d have been more respons-i v e to h i s p a i n , " i n d i c a t i n g t h a t they c o u l d have r e s -ponded to the p a t i e n t d i f f e r e n t l y , and thus perhaps prevented the s u i c i d e attempt. For the Chinese p a r t i c i p a n t i n the study, the i s s u e of r e s p o n s i b i l i t y was an important one because of her p o s i t i o n as the e l d e s t s i b l i n g . The e x p e c t a t i o n i n her f a m i l y was t h a t she would "look a f t e r " the p a t i e n t who was younger than she, and she had attempted to h e l p him i n the past, w i t h l i t t l e s u ccess. She continued to view her r e l a t i o n -68 s h i p to the p a t i e n t as one o f r e s p o n s i b i l i t y : F: I t h i n k , you know, he's the youngest i n the f a m i l y , and uh, I t h i n k , f o r the youngest, i t depends on the e l d e s t more than I do, because I am the e l d e s t i n the f a m i l y . You know, the mother looks a f t e r you, but you have t o look a f t e r the youngest t h a t f o l l o w s you. One f a m i l y d e s c r i b e d f e e l i n g impatient with t h e i r r e l a t i v e ' s constant complaints o f p h y s i c a l ailments i n the pa s t and acknowledged duri n g the i n t e r v i e w t h a t they had not understood " t h i s k i n d o f i l l n e s s . " S i m i l a r l y , s e v e r a l other f a m i l i e s d e s c r i b e d f e e l i n g s o f impatience with the r e l a t i v e ' s behaviour: F: You know, he's a b i g boy, I can't s l a p him, I can't say, you have t o do t h i s and you have to do t h a t . I t ' s e n t i r e l y up t o him. A c t u a l l y he i s a b i g boy. But I was so upset a t times, but I d i d n ' t say any t h i n g . I s t a y q u i e t because, what can I do, I can't do anything. These r e a c t i o n s t o the p a t i e n t i n the past were reframed i n terms o f what the f a m i l i e s now understood to be the s i g n i f i c a n c e o f the p a t i e n t ' s behaviour. The r e a c t i o n s were now viewed as "wrong" or i n e f f e c t i v e and f a m i l i e s d e s c r i b e d changing t h e i r responses t o the p a t i e n t s now t h a t they were i n h o s p i t a l . T h i s d i s c u s s i o n has o u t l i n e d the process by which f a m i l i e s were attempting t o understand what was happening i n the p r e s e n t by examining what had occur r e d i n the p a s t . They examined events p r e v i o u s l y taken f o r granted, and began t o s e e them as s i g n i f i c a n t f a c t o r s i n t h e d e v e l o p -ment o f t h e p a t i e n t ' s i l l n e s s . They e v a l u a t e d t h e i r i n t e r a c t i o n s w i t h t h e p a t i e n t i n t h e p r o c e s s o f r e d e f i n i n g t h e i r s i g n i f i c a n c e t o t h e d e v e l o p m e n t o f t h e i l l n e s s . T h e y s p e n t t i m e t h i n k i n g a b o u t t h e p a t i e n t s ' " p e r s o n a l i t y " and i t s i m p o r t a n c e i n t h e d e v e l o p m e n t o f t h e i l l n e s s . The n e x t s e c t i o n w i l l d i s c u s s how t h e f a m i l i e s d e a l t w i t h t h e e f f e c t o f t h e h o s p i t a l i z a t i o n on t h e i r d a i l y l i v e s . The p r o b l e m s and c o n c e r n s t h a t a r o s e as a r e s u l t o f t h e h o s p i t a l i z a t i o n w i l l be p r e s e n t e d as t h e f a m i l i e s p e r c e i v e d them and t h e p r o c e s s by w h i c h t h e y d e a l t w i t h t h e s e c o n c e r n s w i l l be e xamined. THE PROCESS OF ASSIMILATING THE ILLNESS INTO FAMILY FUNCTIONING As t h e f a m i l i e s d i s c u s s e d t h e p r o c e s s o f e v a l u a t i n g t h e m s e l v e s and t h e p a t i e n t i n t e r m s o f t h e p a s t , t h e y a l s o were c o n c e r n e d a b o u t t h e e f f e c t s t h a t t h i s i l l n e s s and h o s p i t a l i z a t i o n w o u l d h a v e on t h e i r p r e s e n t f a m i l y r e l a -t i o n s h i p s , and on t h e i r i n t e r a c t i o n s w i t h t h e p a t i e n t and t h e h o s p i t a l . As a r e s u l t t h e y e x p e r i e n c e d new p r o b l e m s and c o n c e r n s a b o u t d e a l i n g w i t h t h e h o s p i t a l i z a t i o n . The p r o c e s s by w h i c h t h e f a m i l i e s were a t t e m p t i n g t o d e a l w i t h t h e p r o b l e m s and c o n c e r n s was an i n t e g r a l p a r t o f t h e i r e f f o r t s t o a s s i m i l a t e t h e e x p e r i e n c e . ' The 70 a s s i m i l a t i n g process i n v o l v e d s e v e r a l f a c e t s : 1) l e a r n i n g to i d e n t i f y necessary r o l e changes and d e a l i n g with them; 2) u s i n g i n f o r m a l methods f o r i n f o r m a t i o n g a t h e r i n g ; 3) comparing t h e i r r e l a t i v e t o other p a t i e n t s i n an attempt to r a t i o n a l i z e t h e i r b e l i e f s about mental i l l n e s s ; 4) a d j u s t i n g p e r s o n a l r o u t i n e s t o accommodate h o s p i t a l r o u t i n e s ; and 5) making d e c i s i o n s about i n c l u d i n g or e x c l u d i n g s m a l l c h i l d r e n from the experience. T h e i r b e l i e f s about c a u s a l i t y and t h e i r concerns about t h e i r own c o n t r i b u t i o n s t o the i l l n e s s c r e a t e d i n i t i a l f e e l i n g s o f u n c e r t a i n t y about how t o approach the p a t i e n t when v i s i t i n g . More im p o r t a n t l y , many f a m i l i e s a l l u d e d t o q u e r i e s they had about t h e i r r o l e i n r e l a t i o n t o the p a t i e n t because t h i s had happened: "How do you be f i r m with the guy who was always f i r m with you?" Another f a m i l y d e s c r i b e d i t as: "Yeah, I suppose now I'm a l i t t l e nervous about what I do and say to him - I don't t r e a t him l i k e I used t o . " B e l i e f s about and a t t i t u d e s toward mental i l l n e s s were evi d e n t i n the examples c i t e d above: the f a m i l i e s f e l t they had t o choose t h e i r words c a r e f u l l y when i n t e r a c t i n g with the p a t i e n t , because saying the wrong t h i n g may "set i t o f f " again. Role changes were e v i d e n t as some f a m i l i e s began t o expect l e s s o f the p a t i e n t i n terms o f d e c i s i o n -making . They asked q u e s t i o n s about resuming a parent r o l e , or assuming r e s p o n s i b i l i t i e s normally taken by the p a t i e n t . 71 T h i s was ev i d e n t r e g a r d l e s s o f the r o l e of the p a t i e n t as spouse, son/daughter or parent. The s o l u t i o n s t o these dilemmas v a r i e d , depending upon how the f a m i l y viewed the p a t i e n t ' s a b i l i t y t o make h i s / h e r own d e c i s i o n s or accept r e s p o n s i b i l i t i e s : F: You have seen very r e c e n t evidence t h a t t h i s person i s not capable o f making d e c i s i o n s , i n h i s own best i n t e r e s t s ... a t what p o i n t d i d you get to t h i n k i n g t h a t he i s capable o f making up h i s mind i n a p r o d u c t i v e way? Another f a m i l y member d e s c r i b e d her a t t i t u d e toward her r o l e change i n r e l a t i o n to her husband i n h o s p i t a l : "In a way, you know, a t t h a t moment, you j u s t have t o t r e a t him l i k e s m a l l c h i l d r e n , you know, you have t o keep on, r e p e a t i n g and r e p e a t i n g t h i n g s . " The f a m i l i e s ' b e l i e f s about the r o l e s and f u n c t i o n s o f va r i o u s h e a l t h p r o f e s s i o n a l s a f f e c t e d t h e i r ways o f assim-i l a t i n g the experience. When there were ques t i o n s about t h e i r own c o n t r i b u t i o n to the i l l n e s s , the f a m i l i e s c o n s i d e r e d p s y c h i a t r i s t s and ot h e r s as "experts," p r o f e s -s i o n a l s who would be abl e to answer these q u e s t i o n s . A l l f a m i l i e s experienced disappointment when such i n f o r m a t i o n was not o f f e r e d . They acknowledged t h e i r need f o r inform-a t i o n but were unable t o seek i t out. They continued to hope t h a t the p r o f e s s i o n a l would seek them out. When t h i s d i d not happen, t h e i r e f f o r t s to a s s i m i l a t e the experience were hampered: 72 F: T h e r e ' s n e v e r anybody a r o u n d when y o u go. R: I n t h e e v e n i n g s , when you v i s i t ? F: R i g h t , w e l l I h a v e n ' t f o u n d o u t a n y t h i n g . I d o n ' t know, maybe I ' v e b e e n wrong, maybe I s h o u l d h a v e j u s t p u s h e d i n and a s k e d a wh o l e bunch o f t h i n g s , b u t I t h o u g h t maybe t h e y ' d , whoever was, w o u l d t e l l me. R: Do y o u u n d e r s t a n d what i t i s t h e y a r e t r y i n g t o do w i t h ( p a t i e n t ) ? F: You c a n ' t phone and s a y , how i s ( p a t i e n t ) t o d a y , I r e a l l y n eed t o know t h a t , b e c a u s e maybe I'm n o t e n t i t l e d t o know t h a t anymore, nobody's e v e r s a i d a n y t h i n g t o me a b o u t t h a t . The i n s e c u r i t y and s e l f - d o u b t s e x p r e s s e d by t h i s f a m i l y were s h a r e d b y o t h e r f a m i l i e s . A l t h o u g h i n f o r m a t i o n g a t h e r i n g was s e e n as a n e c e s s a r y e l e m e n t o f t h e a s s i m i l a t i o n p r o c e s s , t h e y l a c k e d t h e r e s o u r c e s t o do i t . A s s i m i l a t i n g t h e e x p e r i e n c e i n c l u d e d r e l a t i n g t o t h e h o s p i t a l e n v i r o n m e n t . They were u n c o m f o r t a b l e i n t h e e n v i r o n m e n t , as e v i d e n c e d by u n c e r t a i n t y and i n s e c u r i t y i n a p p r o a c h i n g t h e " r i g h t p e r s o n " f o r i n f o r m a t i o n . The d i s c o m f o r t hampered t h e a s s i m i l a t i o n o f t h i s o t h e r , new " c u l t u r e " i n t o t h e i r own. T h i s r e s p o n s e o f t h e f a m i l i e s t o t h e p s y c h i a t r i c ward was p a r t o f t h e i r r e a c t i o n t o i t s " c u l t u r a l " a s p e c t s . " C u l t u r e " i s u s e d i n t h i s c o n t e x t t o e m p h a s i z e t h e i m p a c t o f a t o t a l l y new s e t t i n g - - a s u b - c u l t u r e o f t h e f a m i l i e s ' l a r g e r c u l t u r e , w h i c h h a s i t s own norms o f b e h a v i o u r s , i t s own r u l e s and r e g u l a t i o n s and i t s b e l i e f s and a t t i t u d e s t o w a r d m e n t a l i l l n e s s w h i c h may be d i f f e r e n t f r o m t h o s e o f 73 the f a m i l i e s . Some or a l l o f these aspects were d i f f i c u l -t i e s f o r them. As one p a r t i c i p a n t d e s c r i b e d i t : "The environment i s so separate i n the h o s p i t a l , home and h o s p i t a l are two d i f f e r e n t worlds." F a m i l i e s r e l a t e d the i n f o r m a l ways i n which they attempted t o understand the " c u l t u r e " o f the p s y c h i a t r i c h o s p i t a l . They sought i n f o r m a t i o n about the r u l e s and r e g u l a t i o n s , the r o u t i n e s o f the ward, the kin d s o f therapy o f f e r e d , and then formed o p i n i o n s about a l l o f these a s p e c t s . One f a m i l y member d e s c r i b e d her impression t h a t the "lounge" meant they should spend time with other p a t i e n t s and f a m i l i e s : "Well, you saw us i n the lounge. No, we go there , 'cause we don't want t o be separate from, you know, f e e l separate from the other people there; we're a l l k i n d of i n the same boat". In many cases, the p a t i e n t became the main source o f i n f o r m a t i o n about the h o s p i t a l " c u l t u r e " : F: I was very i n t e r e s t e d i n knowing what had happened i n the h o s p i t a l , w i t h him, i n these group s e s s i o n s t h a t he hated so much. R: You never r e a l l y got a c l e a r i d e a what they were about? F: Only from ( p a t i e n t ) . And nobody t o l d me what they were a l l about. For many f a m i l i e s t h i s was u n s a t i s f a c t o r y , and attempts were made to e l i c i t i n f o r m a t i o n from the n u r s i n g s t a f f . Other f a m i l i e s l i s t e n e d a t t e n t i v e l y t o i n t e r a c t i o n s between 74 the s t a f f and the p a t i e n t , and attached meaning to them: R: Have you asked the doct o r t h a t q u e s t i o n , how long i t w i l l take? F: No, not r e a l l y - w e l l , he t a l k e d about i t yesterday, not t h a t I asked him t h a t q u e s t i o n , but i t came out i n the t a l k t h a t he had with ( p a t i e n t ) while I was t h e r e . In most cases, f a m i l i e s expressed d i s s a t i s f a c t i o n with t h i s method o f i n f o r m a t i o n g a t h e r i n g , or expressed a wish t h a t i t evolve i n t o c o n s i s t e n t and frequent c o n t a c t s with, as one f a m i l y d e s c r i b e d i t , "someone who has some connec-t i o n with him." At the same time, however, f a m i l i e s d i d seem to use what i n f o r m a t i o n they r e c e i v e d as a means of e v a l u a t i n g the " r i g h t n e s s " or "wrongness" of the treatment, and i t s e f f e c t i v e n e s s f o r t h e i r r e l a t i v e . F: I co u l d n ' t r e a l l y say, w e l l i t ' s a gr e a t p l a c e , I don't r e a l l y know what - how deeply i n v o l v e d they got i n d i s c u s s i o n groups, but ... I thought i t was j u s t s o r t o f a p l a c e where you t a l k e d with the other p a t i e n t s t h e r e and ate and s l e p t . From attempts to a s s i m i l a t e the p h i l o s o p h i e s o f the h o s p i t a l i n t o t h e i r own b e l i e f systems, c o n f l i c t s became e v i d e n t . For example, i n one u n i t the p h i l o s o p h y was to assume t h a t p a t i e n t s can be r e s p o n s i b l e f o r making d e c i s i o n s and e v a l u a t i n g each o t h e r ' s p r o g r e s s . S e v e r a l f a m i l i e s expressed concern at t h i s : F: You can't depend on somebody, you know, most of the people on t h i s ward th e r e i s something a l i t t l e b i t wrong i n here ( p o i n t i n g to head), you can't depend on the people with something wrong i n 75 here t o vote f o r whether the other i s g e t t i n g b e t t e r or worse. Such c o n f l i c t s i n b e l i e f s r e s u l t e d i n i n c r e a s e d con-cern f o r f a m i l i e s about how the p a t i e n t was b e i n g t r e a t e d . Such concerns made the a s s i m i l a t i o n o f the experience more d i f f i c u l t , adding more qu e s t i o n s and doubts which a f -f e c t e d t h e i r a b i l i t y t o f u n c t i o n on a d a i l y b a s i s . A f u r t h e r i l l u s t r a t i o n o f the e f f e c t s o f b e l i e f s and a t t i t -udes was found i n the f a m i l i e s ' r e a c t i o n s to the p a t i e n t on pass. The passes added some s t r e s s which a f f e c t e d the f a m i l y ' s f u n c t i o n i n g . Time was taken to evaluate the p a t i e n t ' s behaviour and appearance: R: You see a change i n him r i g h t now? F: Oh yeah, yeah. I thought he was on Sunday, on the weekend i t was very very good, I thought. I was a l i t t l e apprehensive to s t a r t with, but once he came i n and s t a r t e d t a l k i n g , I knew i t would be a l l r i g h t . B e l i e f s about mental i l l n e s s a l s o a f f e c t e d the f a m i l i e s ' e v a l u a t i o n o f the s e r i o u s n e s s of the i l l n e s s and t h e i r e x p e c t a t i o n t h a t the h o s p i t a l would "get to the bottom of the problem." The m a j o r i t y o f f a m i l i e s viewed the i l l n e s s as s e r i o u s , and t h i s view a f f e c t e d the f a m i l y f u n c t i o n i n g . One f a m i l y member s t a t e d : "I know i t ' s s e r i o u s . You know, what w i l l be r e s o l v e d i n one week?" Another f a m i l y expressed r e l i e f t h a t the p a t i e n t ' s i l l n e s s was s i t u a t i o n a l l y r e l a t e d and thus was not as s e r i o u s , i n d i c a t i n g t h a t major changes i n f a m i l y f u n c t i o n i n g would 76 not be r e q u i r e d . The awareness o f the "problem" i n f l u e n c e d the a s s i m i l a t i o n p r o c e s s , as f a m i l i e s came to expect long admissions, and they t h e r e f o r e prepared themselves f o r t h i s p e r i o d o f time. When d i s c h a r g e became imminent e a r l i e r than a n t i c i p a t e d , the f a m i l i e s expressed s u r p r i s e . For some, there was a l a c k o f r e a d i n e s s and a concern f o r the p a t i e n t ' s a b i l i t y t o f u n c t i o n and the f a m i l y ' s a b i l i t y t o cope. The l a c k of r e a d i n e s s was d i s c u s s e d i n terms of qu e s t i o n s about accommodation and employment. They were a l s o unprepared because of the l a c k o f understanding of what had o c c u r r e d : F: L e t ' s suppose they've had - ( p a t i e n t ) has been out t h e r e f o r two or three weeks...and they have s t u d i e d her over t h i s p e r i o d , and i t ' s decided t h a t she should go home...well, she s t i l l comes home a complete mystery. Two f a m i l i e s d e s c r i b e d c l o s e and s u p p o r t i v e r e l a t i o n s h i p s with the r e l a t i v e ' s p s y c h i a t r i s t which helped them to f e e l more comfortable w i t h the experience. They were l e s s concerned about the d i s c h a r g e because they f e l t they were able to get the i n f o r m a t i o n they needed. Other f a m i l i e s mentioned one or two c o n t a c t s with o t h e r s t a f f members t h a t were s a t i s f a c t o r y ; however, they experienced f r u s t r a t i o n l a t e r when t h i s person was no l o n g e r a v a i l a b l e . Again, they r e f e r r e d to the need f o r one c o n s i s t e n t person to h e l p them d e a l with the e x p e r i e n c e — 77 e s p e c i a l l y t o h e l p them u n d e r s t a n d t h e " c u l t u r e " o f t h e h o s p i t a l . R e c e i v i n g p r i o r n o t i c e o f d i s c h a r g e was i m p o r t a n t i n t e r m s o f i t s e f f e c t on t h e f a m i l y ' s f u n c t i o n i n g . Most f a m i l i e s r e c e i v e d some u n d e r s t a n d i n g t h a t t h e h o s p i t a l -i z a t i o n w o u l d l a s t f o r s e v e r a l weeks o r more and so h a d a d j u s t e d somewhat t o t h e a b s e n c e o f t h e m i s s i n g member. I n t h e one f a m i l y where t h i s d i d n o t o c c u r and d i s c h a r g e was e x p e c t e d a f t e r s e v e r a l d a y s , t h e y e x p e r i e n c e d c o n f u s i o n and a more immediate c o n c e r n f o r t h e i r a b i l i t y t o c o p e : F: We d i d n ' t know f r o m day t o day, now i f someone had come and s a i d , now l o o k , we're g o i n g t o k e e p h i m f o r two weeks, i t w o u l d n o t o n l y g i v e us a p e r i o d o f t i m e t o r e a d j u s t , and t o s a y , okay, a b r e a t h i n g s p a c e , we g o t two weeks, you know, t h e n we c a n w o r r y a b o u t what's g o i n g t o h a p pen t h e n . F a m i l i e s who d i d h a v e some i d e a o f t h e l e n g t h o f h o s p i t a l i z a t i o n s poke o f an improvement i n c e r t a i n a r e a s , now t h a t t h e p a t i e n t was "under c a r e . " A s e n s e o f immedi-a t e r e l i e f was e x p e r i e n c e d by most f a m i l i e s a t t h e t i m e o f a d m i s s i o n , b u t a l s o a r e c u p e r a t i o n o f p h y s i c a l and emo-t i o n a l s t r e n g t h was d e s c r i b e d . F o r example, s l e e p i n g p a t t e r n s r e t u r n e d t o n o r m a l and d a i l y a c t i v i t i e s were resumed i n a more p r e d i c t a b l e f a s h i o n . They f u r t h e r d e s c r i b e d a d j u s t m e n t t o t h e i d e a o f h o s p i t a l i z a t i o n w h i c h o c c u r r e d a f t e r an i n i t i a l p e r i o d o f t i m e : "The f i r s t c o u p l e o f d a y s , y o u r e a l l y a r e n ' t o r i e n t e d t o what t h e p r o c e d u r e i s a l l a b o u t . " A n o t h e r p a r t i c i p a n t who d e s c r i b e d a d i s t u r b a n c e i n c o n c e n t r a t i o n and c o n s t a n t t h o u g h t s o f h e r 7 8 r e l a t i v e i n h o s p i t a l , l a t e r d e s c r i b e d her adjustment: F: I t ' s not as bad as i n the begi n n i n g ; I d i d n ' t know what to do ... I'm doing more t h i n g s now ... than I d i d the f i r s t two weeks. So, you know I have a d j u s t e d t o i t . The adjustment d e s c r i b e d by t h i s f a m i l y member again emphasized the r o l e changes t h a t o c c u r r e d as f a m i l i e s began to assume some o f the r e s p o n s i b i l i t i e s f o r m e r l y b e l o n g i n g to the p a t i e n t . Other f a m i l i e s i n d i c a t e d r o l e changes i n terms of a r e l i e f from r e s p o n s i b i l i t y , which they saw as being assumed by the h o s p i t a l . F i n a l l y , the f a m i l i e s spoke of the e f f e c t o f the h o s p i t a l i z a t i o n on t h e i r d a i l y l i v e s ; t h a t i s , they more s p e c i f i c a l l y d e f i n e d the p r a c t i c a l i s s u e s and concerns they needed t o de a l w i t h . Two areas i d e n t i f i e d as important c o n s i d e r a t i o n s were f i n a n c i a l problems, r e s u l t i n g from the h o s p i t a l i z a t i o n , and the r e s p o n s i b i l i t y o f v i s i t i n g the p a t i e n t , r e s u l t i n g i n the d i s r u p t i o n o f the d a i l y r o u t i n e : F: I was a l i t t l e concerned a l s o with expenses, t h a t ' s one reason I saw the s o c i a l worker - we're not o v e r l y r i c h . Another f a m i l y d e s c r i b e d i t t h i s way: R: What e f f e c t d i d i t have on your every day l i f e ? What d i f f e r e n c e d i d i t make? F: W e l l , i t r e a l l y d i d to me, uh .. because I l i v e so f a r away, f o r one, and I f e l t g u i l t y t h a t I should be i n to see him as much as I c o u l d . I was going i n , once a week, which i s a l o t f o r me when I'm working f u l l time and I'm t r y i n g to do e v e r y t h i n g e l s e , and i t ' s m e n t a l l y exhausting. 79 A t h i r d c o n s i d e r a t i o n d i s c u s s e d by s e v e r a l f a m i l i e s was the presence o f small c h i l d r e n i n the household. The need to e x p l a i n the reason f o r h o s p i t a l i z a t i o n to c h i l d r e n was a f f e c t e d by the c h i l d r e n ' s age, and by the parents' d e s i r e to p r o t e c t them: R: Does your daughter understand why her f a t h e r i s i n h o s p i t a l ? F: I don't - no I don't t h i n k so, what i s r e a l l y happening, and uh, I ' l l leave i t l i k e t h a t ... she's o n l y seven. So I don't want to go i n t o d e t a i l . T h i s s e c t i o n has d i s c u s s e d the f a m i l y ' s e f f o r t s t o a s s i m i l a t e the h o s p i t a l experience i n t o t h e i r d a i l y l i v e s . The process was d e s c r i b e d as c o n s i s t i n g o f many elements: e v a l u a t i n g the p a t i e n t and d e c i d i n g how t o i n t e r a c t with him/her; d e a l i n g with the elements of the h o s p i t a l c u l t u r e , and r e s o l v i n g the problems and concerns t h a t arose as a r e s u l t o f the h o s p i t a l i z a t i o n . The process was a f f e c t e d by the f a m i l y ' s b e l i e f s about mental i l l n e s s , and the d i f f i -c u l t i e s they experienced i n g a t h e r i n g i n f o r m a t i o n about the i l l n e s s and the h o s p i t a l i z a t i o n . The f a m i l y ' s e f f o r t s t o a s s i m i l a t e t h i s experience i n t o t h e i r f a m i l y f u n c t i o n i n g a l s o had important i m p l i c a -t i o n s f o r t h e i r c o n s i d e r a t i o n s o f the f u t u r e . The process by which they attempted to d e a l with t h e i r questions about the f u t u r e w i l l now be d i s c u s s e d . 80 EXAMINING THE FUTURE: THE PROCESS OF DEALING WITH UNKNOWNS As e x p l a i n e d p r e v i o u s l y , the meaning of the present experience of the i l l n e s s and h o s p i t a l i z a t i o n was d i s -cussed by the f a m i l i e s w i t h i n the context of e v a l u a t i n g the p a s t and examining the f u t u r e . While these two themes are presented here s e p a r a t e l y , i t i s important to note t h a t f o r the f a m i l i e s they were i n t e r t w i n e d , t h a t i s , how they evaluated what happened i n the p a s t was r e f l e c t e d i n t h e i r d e c i s i o n s about how the h o s p i t a l i z a t i o n could or should change s i t u a t i o n s i n the f u t u r e . Three major areas were i d e n t i f i e d : 1) d e f i n i n g t h e i r r e l a t i o n s h i p with the p a t i e n t i n the f u t u r e ; 2) d e t e r -mining the p o s s i b i l i t y of a cure; and 3) examining the need f o r s e p a r a t i o n from the p a t i e n t . A predominant a t t i t u d e they expressed, as these i s s u e s were r a i s e d i n the context of what had o c c u r r e d b e f o r e , was t h a t " t h i n g s would be d i f f e r e n t " i n the f u t u r e . F a m i l i e s had h e l d t h i s as a hope and/or an assumption at the b e g i n n i n g of h o s p i t a l i z a t i o n , but expressed disappointment as d i s c h a r g e approached and the changes were not apparent. D e f i n i n g R e l a t i o n s h i p s S e v e r a l v a r i a b l e s were d i s c u s s e d as important t o c o n s i d e r i n the f u t u r e r e l a t i o n s h i p with the p a t i e n t . The i s s u e of who was now r e s p o n s i b l e f o r the p a t i e n t arose as a 81 r e s u l t o f t h e changed e x p e c t a t i o n s o f t h e h o s p i t a l i z e d p a t i e n t . F a m i l i e s seemed t o h a v e d e c i d e d t h a t t h e y must be i n v o l v e d , a s t h e y q u e s t i o n e d t h e p a t i e n t ' s a b i l i t i e s t o cope w i t h t h e f u t u r e : R: What a b o u t now t h a t h e ' s g e t t i n g some t r e a t m e n t i n t h e h o s p i t a l , what do y o u e x p e c t w i l l h a p p en f r o m t h a t ? F: W e l l , I t h i n k t h i s i s what w o r r i e s me t h e most now, i s t h a t I know what t h e p r o b l e m i s , what k i n d o f f u t u r e i s he g o i n g t o h a v e ? I s he g o i n g t o be a b l e t o f i n d a j o b and h e l p s u p p o r t h i m s e l f ? F a m i l i e s a l s o c o n t i n u e d t o q u e s t i o n t h e i m p a c t o f t h e i r i n t e r a c t i o n s w i t h t h e p a t i e n t i n t h e f u t u r e , a s s u m i n g t h a t by s a y i n g o r e x p e c t i n g c e r t a i n t h i n g s , " i t " w i l l s t a r t a g a i n : F: I'm a l i t t l e n e r v o u s a b o u t what I do and s a y t o h i m - I d o n ' t t r e a t h i m l i k e I u s e d t o , s o r t o f t h i n g . R: B e c a u s e h e ' s b e e n i n h o s p i t a l ? F: Yeah, w e l l y o u ' r e k i n d o f a f r a i d t h a t t h e y ' l l f a l l b a c k i n t o t h e way t h e y were b e f o r e and y o u ' r e n o t s u r e i f y o u a r e t h e c a u s e o f i t o r n o t . The age o f t h e p a t i e n t was d i s c u s s e d as a s i g n i f i c a n t v a r i a b l e i n d e t e r m i n i n g t h e f a m i l y ' s i n v o l v e m e n t i n t h e p a t i e n t ' s f u t u r e . When p a t i e n t s were i n t h e i r e a r l y t w e n t i e s , f o r example, f a m i l i e s e x p r e s s e d c o n c e r n b e c a u s e t h e y were so young and t h e i r e n t i r e f u t u r e s were a f f e c t e d . 82 S e v e r a l f a m i l i e s d e s c r i b e d a dilemma they f e l t r e g a r d i n g l e g a l r e s p o n s i b i l i t y , f i r s t l y because the p a t i e n t was twenty-one, and secondly because they f e l t t here were l e g a l i m p l i c a t i o n s o f the p a t i e n t ' s s u i c i d e attempt. While some f a m i l i e s expected l e s s o f the p a t i e n t i n the f u t u r e , other f a m i l i e s f e l t they would have to gi v e a c l e a r message t h a t change was expected. The f a m i l i e s were w i l l i n g to support the p a t i e n t a f t e r d i s c h a r g e , but expressed l e s s t o l e r a n c e f o r d i s r u p t i o n o f t h e i r f a m i l y f u n c t i o n i n g : F: She d i d t a l k about coming back. R: Is t h a t something you t h i n k might happen? F: Hm, hm. Sure. And t h a t would be f i n e . I don't know, I t h i n k t h a t , i t ' s almost t h a t we'd have t o put down some g u i d e l i n e s , she'd have to understand t h a t we have our own l i f e . T h i s i n d i c a t e s the dilemma t h a t many f a m i l i e s experienced as they looked toward t h e i r f u t u r e r e l a t i o n -s h i p with the p a t i e n t . They expected l e s s o f the p a t i e n t but a t the same wanted t h i n g s t o be d i f f e r e n t . T h e i r q u e s t i o n s about whether the p a t i e n t was cured were a major f a c t o r i n determining t h e i r e x p e c t a t i o n s i n the f u t u r e . The P o s s i b i l i t y of Cure B e l i e f s about mental i l l n e s s were very e v i d e n t here, as f a m i l i e s d i s c u s s e d how long i t would take the p a t i e n t t o 83 get b e t t e r , and the p o s s i b i l i t y of a r e c u r r e n c e . Questions l i k e " w i l l he ever be the same?" and " w i l l he get back to normal?" r e f l e c t e d the f e e l i n g s of u n c e r t a i n t y experienced. As w e l l , f a m i l i e s viewed the problem as s e r i o u s , and thus f e l t the p a t i e n t r e q u i r e d more time a f t e r h o s p i t a l i z a t i o n to "get b e t t e r . " R: What do you expect w i l l happen a f t e r he comes home, w i l l be continue to see Dr. S.? F: Yeah. R: Did they t a l k t o you about tha t ? F: No...I guess he w i l l go more o f t e n , i n the b e g i n n i n g , you know, u n t i l he i s completely... r i d o f h i s problem. One f a m i l y member who q u e r i e d g e n e t i c involvement f e l t t h a t the p a t i e n t had the problem f o r l i f e . Others, who f e l t the h o s p i t a l i z a t i o n had not adequately d e a l t with the problem, d i d not expect much change i n the f u t u r e . As one f a m i l y member d e s c r i b e d i t , "I don't t h i n k i t was h e l p i n g him to stay t h e r e " and another f e l t t h a t the change was " f o r a very s h o r t p e r i o d of time." The a t t i t u d e toward the p o s s i b i l i t y of a r e c u r r e n c e was v a r i e d : most f a m i l i e s expressed a hope t h a t i t would not happen; s e v e r a l expressed a "wait and see" a t t i t u d e , w h i l e s e v e r a l others thought i t was p o s s i b l e because they s t i l l l a cked the knowledge they needed to support the r e l a t i v e i n the f u t u r e . 84 The Need f o r S e p a r a t i o n The need t o change the environment i n some ways was expressed by a l l f a m i l i e s , the degree and type o f change depending upon what they b e l i e v e d caused the problem. The accommodation of the p a t i e n t was a common f o c a l p o i n t : "Should he come back t o the surroundings t h a t he l e f t ? Is he going to go r i g h t back to t h a t k i n d o f t h i n g again?" Another f a m i l y expressed concern t h a t the p a t i e n t ' s environment was not changing, t h e r e f o r e the p o s s i b i l i t y o f a r e c u r r e n c e was i n c r e a s e d . The i s s u e o f changing the p a t i e n t ' s l i v i n g arrange-ments was one th a t was r a i s e d by the h o s p i t a l s t a f f i n s e v e r a l cases, and these f a m i l i e s had s t r o n g o p i n i o n s about the suggestions the p a t i e n t was r e c e i v i n g : "I'm worried about t h i s b usiness o f him going i n t o a p l a c e o f h i s own. He wouldn't be happy i n a group, he wouldn't be happy boarding." Other changes i n the environment t h a t had been i d e n -t i f i e d as sources o f s t r e s s , such as the p a t i e n t ' s employ-ment, were s t i l l c o nsidered important. One f a m i l y member expressed acceptance o f such changes, but a l s o f e l t s t r o n g l y t h a t she needed to be i n c l u d e d i n such p l a n n i n g : F: I t ' s my f u t u r e too, r i g h t ? I t ' s not j u s t my husband, we have t o go through i t together, and i f I don't know what they p l a n f o r him, then i t ' s , you know, I can't h e l p him here, i f I don't know i f he has to go through t h i s or through t h a t , so yeah, I want t o be i n v o l v e d . 85 Such f e e l i n g s and b e l i e f s about the f a m i l y ' s i n v o l v e -ment i n the p a t i e n t ' s f u t u r e were shared by many f a m i l i e s . The need f o r involvement i n d e c i s i o n making about the f u t u r e was one of the most important o f those i d e n t i f i e d by the f a m i l i e s . SUMMARY T h i s chapter has presented the f a m i l i e s ' accounts of t h e i r experiences o f the f i r s t p s y c h i a t r i c h o s p i t a l i z a t i o n o f a r e l a t i v e . I t has been d e s c r i b e d i n terms of p r o -cesses, developed and o r g a n i z e d by the r e s e a r c h e r w i t h i n the framework d e l i n e a t e d by the study's purposes. The themes i d e n t i f i e d as processes thus i n d i c a t e d the dynamic nature of the experience f o r these f a m i l i e s . The process o f a c c e p t i n g h o s p i t a l i z a t i o n as a s o l u t i o n was d e s c r i b e d as an important aspect of the h o s p i t a l experience which f a m i l i e s needed to e x p l o r e . Events t h a t occurred p r i o r t o h o s p i t a l i z a t i o n were examined f o r added meaning, now t h a t the p a t i e n t s were d e f i n e d as s i c k , and t h e i r behaviours were seen as symptomatic of t h e i r i l l n e s s . As f a m i l i e s attempted to understand the meaning of the i l l n e s s and i t s treatment, i t became c l e a r t h a t they p e r -c e i v e d i t as a n e g a t i v e experience i n terms o f the stigma attached to i t . T h e i r process o f understanding a l s o 86 i n c l u d e d an e x a m i n a t i o n o f t h e i r r e l a t i o n s h i p w i t h t h e p a t i e n t , b o t h b e f o r e and d u r i n g h o s p i t a l i z a t i o n . They, t h e r e f o r e , v i e w e d t h e e x p e r i e n c e o f i l l n e s s as a s h a r e d one, a v i e w t h e y c o n t i n u e d t o h o l d a b o u t t h e t r e a t m e n t . F i n a l l y , t h e e f f e c t s on t h e f a m i l y ' s f u n c t i o n i n g were a d d r e s s e d i n terms o f t h e p r o b l e m s and c o n c e r n s t h e p a t i e n t ' s h o s p i t a l i z a t i o n c a u s e d . T h e i r d i f f i c u l t i e s i n d e a l i n g w i t h s u c h c o n c e r n s on t h e i r own were d i s c u s s e d , as were t h e i r a p p r e h e n s i o n s a b o u t d e a l i n g w i t h t h e f u t u r e and i t s u n c e r t a i n t i e s . T h r o u g h o u t t h e a c c o u n t s , t h e f a m i l i e s e x p r e s s e d a v a r i e t y o f e m o t i o n s , f r o m r e l i e f t h a t t h e p r o b l e m was b e i n g d e a l t w i t h t o g u i l t b e c a u s e t h e y h a d p a r t i c i p a t e d i n t h e a d m i s s i o n . F a m i l i e s were a b l e t o i d e n t i f y what t h e y needed f r o m h e a l t h p r o f e s s i o n a l s and t h e y were a b l e t o d i s t i n -g u i s h b etween e m o t i o n a l and i n f o r m a t i o n a l n e e d s . T h i s c h a p t e r h a s a t t e m p t e d t o p r e s e n t t h e a c c o u n t s as t h e y were c o n s t r u c t e d d u r i n g t h e i n t e r v i e w p r o c e s s w i t h t h e f a m i l i e s . The n e x t c h a p t e r w i l l i n t e r p r e t t h e i r s i g n i f i c a n c e as t h e y r e l a t e t o t h e l i t e r a t u r e r e v i e w e d i n C h a p t e r I I . CHAPTER V DISCUSSION OF ACCOUNTS I n t h e p r e v i o u s c h a p t e r , t h e f a m i l i e s 1 r e a c t i o n s t o t h e h o s p i t a l i z a t i o n o f a f a m i l y member were p r e s e n t e d . T h e s e r e a c t i o n s w i l l be d i s c u s s e d i n r e l a t i o n s h i p t o t h e l i t e r a t u r e r e v i e w e d i n C h a p t e r I I . The p u r p o s e o f s u c h a d i s c u s s i o n i s t o i l l u s t r a t e how t h e p r e s e n t k nowledge o f t h e i m p a c t o f h o s p i t a l i z a t i o n on f a m i l i e s c a n be enh a n c e d by e l i c i t i n g t h e f a m i l y ' s p e r s p e c t i v e . The p u r p o s e s o f t h e s t u d y g u i d e d t h e r e s e a r c h e r t o se e k t h e f a m i l i e s ' p e r c e p t i o n s o f a l l a s p e c t s o f t h e h o s p i t a l i z a t i o n , t h e i r p e r c e p t i o n s o f p r o b l e m s and c o n c e r n s and how t h e y d e a l t w i t h them, and t h e i r p e r c e p t i o n s o f what t h e y needed f r o m h e a l t h c a r e w o r k e r s . The d i s c u s s i o n o f t h e r e l a t i o n s h i p o f t h e a c c o u n t s t o t h e l i t e r a t u r e w i l l t h e r e -f o r e pay p a r t i c u l a r a t t e n t i o n t o t h e i n c r e a s e d u n d e r -s t a n d i n g o f t h e s e a r e a s . The c h a p t e r w i l l f o l l o w t h e o r g a n i z a t i o n o f t h e l i t e r a t u r e r e v i e w e d i n C h a p t e r I I . The a r e a s t o be d i s -c u s s e d a r e t h e i m p a c t o f p h y s i c a l and m e n t a l i l l n e s s on t h e f a m i l y , t h e p s y c h o a n a l y t i c t h e o r y o f t h e f a m i l y as an e t i o l o g i c a l f a c t o r , i n t e r p e r s o n a l t h e o r y o f t h e i m p o r t a n c e o f r o l e s and r e l a t i o n s h i p s , and s y s t e m s t h e o r y and t h e 87 88 e f f e c t o f h o s p i t a l i z a t i o n on t h e f a m i l y f u n c t i o n i n g . IMPACT OF PHYSICAL AND MENTAL ILLNESSES ON THE FAMILY The r e v i e w o f t h e r e s e a r c h i n t h i s a r e a r e v e a l e d two m a j o r c a t e g o r i e s o f i l l n e s s : i l l n e s s e p i s o d e s r e g a r d e d as a c r i s i s , and c h r o n i c i l l n e s s v i e w e d as o n - g o i n g s t r e s s f o r t h e f a m i l y . B o t h o f t h e s e c a t e g o r i e s seem t o a p p l y t o t h i s s t u d y , b u t a t d i f f e r e n t p h a s e s o f t h e i l l n e s s e x p e r i e n c e . F a m i l i e s d e s c r i b e d e x p e r i e n c i n g s t r e s s p r i o r t o h o s -p i t a l i z a t i o n . They d e s c r i b e d t h e p a t i e n t ' s b e h a v i o u r as " u n p r e d i c t a b l e , " o r " d i s a p p o i n t i n g . " They t h e n r e l a t e d t h e emergence o f a new e v e n t o r s i t u a t i o n f o r w h i c h t h e y were u n p r e p a r e d . The s i t u a t i o n became a c r i s i s , w a r r a n t i n g i m m e d i a t e a t t e n t i o n by someone o u t s i d e t h e f a m i l y . R e s e a r c h i n t h i s a r e a a l s o r e v e a l e d a p a r a l l e l between c h r o n i c m e n t a l i l l n e s s and t h e e f f e c t o f t u b e r c u l o s i s ( Anthony, 1 9 6 9 ) . The q u e s t i o n h a s b e e n r a i s e d w h e t h e r c e r t a i n p h y s i c a l i l l n e s s e s , s u c h as t u b e r c u l o s i s , h a v e a s t i g m a s i m i l a r t o t h a t o f m e n t a l i l l n e s s . The f a m i l i e s i n t h i s s t u d y p e r c e i v e d no s u c h s i m i l -a r i t y b etween t h e e x p e r i e n c e o f m e n t a l i l l n e s s and any p h y s i c a l i l l n e s s . A l t h o u g h t h e e x t e n t o f t h e i r e x p e r i e n c e w i t h p h y s i c a l i l l n e s s e s may h a v e a f f e c t e d t h e i r a b i l i t y t o draw s u c h p a r a l l e l s , i t i s t h e i r p e r c e p t i o n o f t h e s e s i t u a t i o n s w h i c h i s a t i s s u e . T h e s e f a m i l i e s v i e w e d t h e i r 89 s i t u a t i o n s as b e i n g unique w i t h i n the h e a l t h care system. That f a c t must be con s i d e r e d when e v a l u a t i n g t h e i r e f f o r t s a t d e a l i n g w i t h the p s y c h i a t r i c i l l n e s s and treatment experience. The r e s e a r c h s p e c i f i c a l l y concerning g e n e r a l h o s p i t a l i z a t i o n s f o r p h y s i c a l i l l n e s s i n d i c a t e d t h a t f a m i l i e s ' responses and coping p a t t e r n s were a f f e c t e d by t h e i r u n f a m i l i a r i t y with the h o s p i t a l environment and the type and s e v e r i t y o f the i l l n e s s . The coping p a t t e r n s of the f a m i l i e s i n t h i s study were s i m i l a r l y a f f e c t e d . F a m i l i e s d i d indeed i d e n t i f y l a c k o f p r e v i o u s exper-i e n c e or exposure t o p s y c h i a t r i c h o s p i t a l s as a f a c t o r i n t h e i r a b i l i t y t o cope. They d e s c r i b e d t h e i r notions o f gen e r a l h o s p i t a l s , presumably formulated from a v a r i e t y o f sources, and t h e i r f i n d i n g t h a t any such knowledge d i d not h e l p i n the pr e s e n t s i t u a t i o n . I t was as i f the p s y c h i a t r i c h o s p i t a l were a s u b - c u l t u r e o f i t s own t o which few people were exposed, and f o r which the r u l e s , procedures, and assumptions of the l a r g e r c u l t u r e d i d not apply. Thus, they experienced c o n f u s i o n and dissonance when exposed t o ward r o u t i n e s , r e g u l a t i o n s , p h i l o s o p h i e s , and treatments t h a t were d i f f e r e n t from what they assumed h o s p i t a l s were l i k e . One f a m i l y d i d have a p r i o r exposure t o a p s y c h i a t r i c s e t t i n g because of the h o s p i t a l i z a t i o n of another member. T h i s f a m i l y f e l t t h a t , as a r e s u l t , they understood what the p a t i e n t "was going through", but i t d i d not h e l p them t o d e a l with the second h o s p i t a l i z a t i o n , or t o f e e l more 90 comfortable i n the p s y c h i a t r i c h o s p i t a l s e t t i n g . T'he f a m i l i e s ' p e r c e p t i o n s of s e v e r i t y of i l l n e s s was an important aspect of the experience f o r them. They f e l t t h a t t h e i r awareness of stigma a f f e c t e d f a m i l y f u n c t i o n i n g . T h i s i s a f i n d i n g s i m i l a r to Stember's (1977), i n t h a t the f a m i l i e s ' p e r c e p t i o n s of s e v e r i t y i n f l u e n c e d the amount of s t r e s s they experienced. The d i f f e r e n c e s between the two f i n d i n g s , however, were the f a c t o r s seen t o i n f l u e n c e the f a m i l y ' s p e r c e p t i o n of the p a t i e n t ' s i l l n e s s . In Stember's study, she f e l t i t was due t o the l a c k of communication between p h y s i c i a n and f a m i l y . In the p r e s e n t study, f a m i l i e s f e l t t h a t s e v e r i t y o f mental i l l n e s s was l e s s e a s i l y and l e s s a c c u r a t e l y d e f i n e d than p h y s i c a l i l l n e s s , because i t was l e s s v i s i b l e . There were no t a n g i b l e s i g n s of the i l l n e s s . The ambiguity of mental i l l n e s s experienced by a l l f a m i l i e s l e d them t o p e r c e i v e the p a t i e n t ' s s i t u a t i o n as " s e r i o u s , " r e g a r d l e s s of the p a r t i c u l a r d i a g n o s i s . I t would seem t h a t t h i s ambiguity may be due to t h e i r l a c k of p s y c h i a t r i c knowledge, compared to the more p r e v a l -ent medical knowledge. In order t o h e l p e x p l a i n the meaning o f the p a t i e n t ' s i l l n e s s , f a m i l i e s may make erroneous assumptions because they l a c k the knowledge necessary f o r and s p e c i f i c t o the s i t u a t i o n at hand. In summary, f a m i l i e s viewed mental i l l n e s s and h o s p i t a l i z a t i o n as d i f f e r e n t from p h y s i c a l i l l n e s s and treatment. At the same time, however, they t r i e d t o see the 91 s i m i l a r i t i e s i n o r d e r t o make s e n s e o f t h e e x p e r i e n c e . I t i s i m p o r t a n t t o r e c o g n i z e t h a t s u c h i n c o n g r u e n c i e s may e x i s t i n many a r e a s where f a m i l i e s a r e s t r u g g l i n g t o d e v e l o p e x p l a n a t i o n s o f t h e v a r i o u s a s p e c t s o f t h e h o s p i t -a l i z a t i o n , and a r e a t t e m p t i n g t o d e a l w i t h t h e p r o b l e m s and c o n c e r n s t h a t a r i s e . The p e r c e p t i o n o f t h e u n i q u e n e s s o f t h e p s y c h i a t r i c h o s p i t a l was t h u s an i m p o r t a n t a s p e c t o f t h e e x p e r i e n c e w h i c h f a m i l i e s i d e n t i f i e d . They had p r o b l e m s i n c o p i n g w i t h t h e e x p e r i e n c e as a r e s u l t o f t h i s p e r c e p t i o n . FAMILIES OF PSYCHIATRIC PATIENTS P s y c h o a n a l y t i c T h e o r y : F a m i l y As an E t i o l o g i c a l F a c t o r W h i l e t h e p r e s e n t s t u d y was d e s i g n e d t o e l i c i t t h e f a m i l y ' s p e r c e p t i o n o f t h e h o s p i t a l i z a t i o n and as s u c h was n o t c o n c e r n e d w i t h c a u s a l f a c t o r s i n t h e i l l n e s s , most f a m i l i e s i n i t i a t e d d i s c u s s i o n o f c a u s a l i t y t h e m s e l v e s . The q u e s t i o n o f t h e i r own c o n t r i b u t i o n t o t h e d e v e l o p m e n t o f t h e i l l n e s s h a d a major e f f e c t on a l l a s p e c t s o f t h e h o s -p i t a l i z a t i o n e x p e r i e n c e . D u r i n g t h e c o u r s e o f t h e i n t e r v i e w s , i t became o b v i o u s t h a t t h e f a m i l i e s d i d n o t s h a r e t h e r e s e a r c h e r ' s v i e w o f t h e h o s p i t a l i z a t i o n as a d i s t i n c t e x p e r i e n c e , o r even a d i s t i n c t p e r i o d o f t i m e . F o r them, t h e h o s p i t a l i z a t i o n became one a s p e c t o f t h e i l l n e s s e x p e r i e n c e , as d i d t h e 92 events l e a d i n g up to admission. As a r e s u l t , t h i s r e s e a r c h e r came to understand the f a m i l i e s 1 view of the " i l l n e s s - h o s p i t a l experience," r a t h e r than t o narrowly focus on aspects of the h o s p i t a l i z a t i o n as a separate experience. During the time of the h o s p i t a l i z a t i o n , the f a m i l i e s examined t h e i r f a m i l i a l r o l e s , whether as p a r e n t s , c h i l d r e n , or spouses. They examined t h e i r own values and were concerned about the e f f e c t of these on t h e i r expec-t a t i o n s and treatment of the p a t i e n t s . The reviewed l i t e r a t u r e i n d i c a t e d attempts to i d e n t i f y " s p e c i f i c p a r e n t a l a t t i t u d e s , t r a i t s , or p r a c t i c e s " (Bloch, 1974: 182) which caused mental i l l n e s s . The parents i n t h i s study s i m i l a r l y examined t h e i r own l i v e s f o r the l a y i n g of blame. C h i l d r e n and spouses a l s o examined t h e i r past r e l a t i o n s h i p w i t h the p a t i e n t , and t r i e d t o determine how they c o u l d have helped, thus p r e v e n t i n g the i l l n e s s from happening. A major c h a r a c t e r i s t i c of the i l l n e s s - h o s p i t a l experience t h a t was c l e a r l y d e s c r i b e d by f a m i l i e s was t h e i r p e r c e p t i o n t h a t i t was a h i g h l y p e r s o n a l one. In other words, they saw themselves as i n v o l v e d with the p a t i e n t p r i o r t o admission, and continued t o d e f i n e the h o s p i t a l -i z a t i o n as a shared experience. Previous r e s e a r c h has not c a l l e d a t t e n t i o n t o t h i s important p e r c e p t i o n . The search f o r c a u s a l f a c t o r s , w h i l e i t i n c l u d e d s e l f - e x a m i n a t i o n to a g r e a t degree, a l s o i n c l u d e d an examination of the p a t i e n t ' s p e r s o n a l i t y , i m p l y i n g t h a t 93 " t h a t ' s t h e way he o r she i s " and t h u s c o u l d n o t be e x p e c t e d t o be any d i f f e r e n t . T h i s e x p l a n a t i o n and a c c e p t a n c e o f c e r t a i n b e h a v i o u r s e m p h a s i z e d t h e f a m i l i e s ' b e l i e f i n s h a r e d r e s p o n s i b i l i t y . They were w i l l i n g t o a c c e p t blame, b u t o n l y t o a p o i n t . The l a c k o f c l a r i t y i n t h e i r own t h i n k i n g a b o u t t h i s i s s u e o f r e s p o n s i b i l i t y was e v i d e n t . I t was a s e n s i t i v e i s s u e , a p r o b l e m t h a t f a m i l i e s h a d d i f f i c u l t y r e s o l v i n g . The a s s u m p t i o n by f a m i l i e s t h a t t h e y h a d c o n t r i b u t e d t o t h e p a t i e n t s ' p r o b l e m s i n f l u e n c e d t h e i r e x p e c t a t i o n s o f t h e a t t e n t i o n t h e y w o u l d r e c e i v e f r o m h o s p i t a l s t a f f . T h i s i s an a r e a t h a t h a d n o t b e e n a d d r e s s e d by p r e v i o u s r e s e a r c h . B e l i e v i n g t h a t t h e y were p a r t o f t h e p r o b l e m , and a s s u m i n g h e a l t h p r o f e s s i o n a l s s h a r e d t h i s b e l i e f , f a m i l i e s t h e r e f o r e e x p e c t e d t o be p a r t o f t h e s o l u t i o n . They a l s o e x p e c t e d t o r e c e i v e i n f o r m a t i o n on what t h e y c o u l d do d i f f e r e n t l y t o p r e v e n t t h e p r o b l e m f r o m r e c u r r i n g . I t was a c o n c e r n t o them when s u c h s u g g e s t i o n s and h e l p were n o t f o r t h c o m i n g . T h i s d i d n o t i n d i c a t e t o them t h a t t h e i r a s s u m p t i o n s h a d been wrong, o n l y t h a t t h e y h a d n o t been c o n f i r m e d . The f a i l u r e o f t h e s t a f f t o meet t h e f a m i l i e s ' needs f o r s u p p o r t o r d e n i a l o f p e r c e p t i o n s l e f t t h e f a m i l i e s f e e l i n g p e s s i m i s t i c a b o u t t h e f u t u r e . W h i l e t h e e x p e c t a t i o n o f t h e s e f a m i l i e s o f t h e d e g r e e and t y p e o f i n v o l v e m e n t i n t h i s s e t t i n g may be u n i q u e , t h e y e v i d e n t l y d i d h a v e some u n d e r s t a n d i n g o f t h e r o l e s o f h e a l t h p r o f e s s i o n a l s . 94 T h i s r e s e a r c h e r has questioned why these f a m i l i e s s u b j e c t e d themselves t o such i n t e n s i v e i n t r o s p e c t i o n . Were they using i t as way of "making sense" o f t h e i r experience? I t may be t h a t the l a c k of c l e a r answers from other sources r e s u l t e d i n the f a m i l i e s u s i n g t h e i r p a s t i n t e r a c t i o n s with, the p a t i e n t as a way of e x p l a i n i n g the i l l n e s s . Complex s o c i e t a l f o r c e s may a l s o c o n t r i b u t e to t h e i r views, as may the messages they r e c e i v e from h e a l t h p r o f e s s i o n a l s . S e v e r a l f a m i l i e s i n t h i s study were not so i n t e n s i v e l y i n t r o s p e c t i v e . They were not preoccupied with a c c e p t i n g blame f o r c o n t r i b u t i n g to the problem, and thus seemed t o expect d i f f e r e n t r e s u l t s , r e g a r d l e s s of whether they were i n c l u d e d i n the treatment. In one case, a f a m i l y member had a comfortable r e l a t i o n s h i p with the p a t i e n t ' s p s y c h i a t r i s t , whom she t r u s t e d t o make the p a t i e n t " b e t t e r . " She accepted her l a c k o f understanding of the treatment. In another case, a f a m i l y member had p r o f e s s i o n a l experience i n the f i e l d , and t h e r e f o r e u t i l i z e d her knowledge t o e x p l a i n what was happening. The c o n t r a s t p r o v i d e d by these f a m i l i e s i l l u s t r a t e s the importance of c o n s i d e r i n g the source of knowledge and how i t i s used by f a m i l i e s i n understanding events. I t a l s o h i g h l i g h t s the i n d i v i d u a l i t y of each f a m i l y ' s experience, and thus adds an important dimension t o the c o n s i d e r a t i o n o f f a m i l i e s ' r e a c t i o n s t o h o s p i t a l i z a t i o n . A f u r t h e r c o n t r a s t to note i n t h i s d i s c u s s i o n i s the e f f e c t of c u l t u r a l backgrounds on one's e x p l a n a t i o n s of the 95 cause of the problem. For the Chinese f a m i l y i n t h i s study, there was a d i s t i n c t i o n between mental (meaning "crazy" and "scary") and emotional (meaning s t r u g g l e s w i t h one's con-s c i e n c e f o r wrong-doings). Since the p a t i e n t was subjected to a s t r u g g l e with h i s conscience, the f a m i l y b e l i e v e d the p a t i e n t ' s own a c t i o n s were the cause o f the problem, and t h e r e f o r e they f e l t t h e r e was l i t t l e they could have done to change t h a t , other than g i v e advice to a c t d i f f e r e n t l y . Such c u l t u r a l v a r i a t i o n s , w h ile c e r t a i n l y not d e f i n i t i v e l y demonstrated i n t h i s study, h i g h l i g h t the importance of c l a r i f y i n g key phrases or terms such as "mental i l l n e s s " w i t h each f a m i l y and p a t i e n t . T h i s d i s c u s s i o n has shown how the i s s u e of c a u s a l i t y i s an important aspect o f the i l l n e s s - h o s p i t a l i z a t i o n experience of f a m i l i e s , i n v o l v i n g a " l o o k i n g back" t o the p a s t f o r e x p l a n a t i o n s of p r e s e n t events. The f o l l o w i n g d i s c u s s i o n w i l l examine what has been learned about the e f f e c t s o f these and o t h e r aspects o f the experience on the f a m i l y ' s i n t e r a c t i o n s with o t h e r s . I n t e r p e r s o n a l Theory; Impact of Mental I l l n e s s on Family  I n t e r a c t i o n s The responses of the f a m i l y to the presence of a m e n t a l l y i l l r e l a t i v e have been researched i n some depth. S e v e r a l f a c t o r s should be c o n s i d e r e d when e v a l u a t i n g the e f f e c t on the f a m i l y ' s i n t e r a c t i o n s w i t h the p a t i e n t , with each other, and with others o u t s i d e the f a m i l y u n i t . These 96 f a c t o r s i n c l u d e d i f f i c u l t i e s i n a c c e p t i n g the i l l n e s s , changing e x p e c t a t i o n s , making d e c i s i o n s r e g a r d i n g the care of the r e l a t i v e , and s h i f t i n g r e s p o n s i b i l i t i e s . D i f f i c u l t i e s A c c e p t i n g I l l n e s s . The a b i l i t y o f the f a m i l y to accept the mental i l l n e s s was a major v a r i a b l e s t u d i e d by r e s e a r c h e r s . The l i t e r a t u r e c o n t a i n s r e p o r t s of c o n f l i c t i n g r e s u l t s . S e v e r a l authors r e p o r t e d t h a t f a m i l i e s denied the mental i l l n e s s as they searched f o r p h y s i c a l causes to e x p l a i n the p a t i e n t ' s behaviour. While the present study has i n d i c a t e d s i m i l a r d i f f i c u l t i e s f o r some f a m i l i e s p r i o r t o the h o s p i t a l i z a t i o n , these same f a m i l i e s began de v e l o p i n g an awareness of the p a t i e n t as "mentally i l l " when h o s p i t a l i z a t i o n a c t u a l l y o c c u r r e d . T h i s was shown c l e a r l y by t h e i r d e s c r i p t i o n s o f the p a t i e n t as " d i f f e r e n t " and h i s or her behaviour as "not normal." What seemed t o be d i f f i c u l t f o r these f a m i l i e s was d e a l i n g with the problem o f the p a t i e n t ' s behaviour. They d e s c r i b e d d i f f i c u l t i e s i n " t a k i n g charge" of the p a t i e n t s f o r a long p e r i o d o f time, and encouraged the p a t i e n t s t o seek h e l p f o r themselves. T h i s was i n c o n t r a s t t o i n t e r a c t i o n s with p a t i e n t s a f t e r admission, when f a m i l i e s d e s c r i b e d a more d i r e c t and f i r m approach toward the p a t i e n t . Having decided t o seek h e l p , f a m i l i e s r e l a t e d t h e i r e f f o r t s t o con t a c t p s y c h i a t r i s t s or other mental h e a l t h 97 p r o f e s s i o n a l s o r a g e n c i e s , t h u s i n d i c a t i n g t h e i r a w a reness o f t h e p r o b l e m as " m e n t a l i l l n e s s . " C l a u s e n and Y a r r o w (1955) i n d i c a t e d t h a t f a m i l i e s most o f t e n c o n t a c t e d t h e f a m i l y p h y s i c i a n f i r s t , and r e l a t e d t h i s f i n d i n g t o t h e f a m i l y ' s n e e d t o d e f i n e t h e p a t i e n t ' s p r o b l e m as a p h y s i c a l one. I n t h e p r e s e n t s t u d y , i n c a s e s where a f a m i l y p h y s i c -i a n was c o n t a c t e d , i t w o u l d seem t h a t i t was as much a c a s e o f n o t kn o w i n g where e l s e t o go as i t was an a t t e m p t t o d e f i n e t h e p r o b l e m as a p h y s i c a l one. The d i f f i c u l t i e s t h e y e x p e r i e n c e d i n s e e k i n g and r e c e i v i n g t h i s k i n d o f h e l p may h a v e b e e n a g g r a v a t e d by t h e h o s p i t a l i z a t i o n , s i n c e i t f o r c e d t h e r e c o g n i t i o n b y t h e m s e l v e s and o t h e r s t h a t t h e p a t i e n t was s i c k . Even t h o u g h b e h a v i o u r s p r i o r t o h o s p i t a l i z a t i o n were v i e w e d w i t h c o n c e r n and t h e r e was an aw a r e n e s s o f t h e need f o r p s y c h i a t r i c h e l p , i t seems t h a t i t was n o t u n t i l t h e p a t i e n t was i n h o s p i t a l t h a t t h e " s i c k " l a b e l was a p p l i e d . P h r a s e s s u c h a s , "now t h a t I know what t h e p r o b l e m i s " and "now t h a t s h e ' s s i c k , " were i n d i c a t i v e o f a change i n t h e way t h a t f a m i l i e s v i e w e d t h e p a t i e n t s . T h e r e was a c o n c u r r e n t s h i f t i n t h e i n t e r a c t i o n s w i t h t h e p a t i e n t . A s e n s e o f u n e a s i n e s s o r c a r e f u l n e s s d e v e l -o p e d . The r e a d e r i s r e f e r r e d t o Z w e r l i n g and M e n d e l s o h n ' s (1965) i m p r e s s i o n t h a t h o s p i t a l i z a t i o n i s a l a s t r e s o r t f o r t h e f a m i l y - - a n i n t e r p r e t a t i o n t h a t c o u l d be a p p l i e d h e r e , b e c a u s e o f t h e " s i c k " l a b e l . 98 The P e r c e p t i o n of Stigma. The i n i t i a l h e s i t a n c y about h o s p i t a l i z a t i o n may a l s o be i n f l u e n c e d by the f a m i l y ' s p e r c e p t i o n o f stigma, i n t h a t h o s p i t a l i z a t i o n i s more d i f f i c u l t to conceal from o t h e r s . Clausen and Yarrow i d e n t i f i e d the need f o r concealment as important t o the wives i n t h e i r study, and i t may be an important i n f l u e n c e i n the present study. The complexity of the stigma i s s u e and the need f o r concealment may have had an e f f e c t on who was considered "acceptable" t o c o n t a c t f o r h e l p , without p u b l i c l y l a b e l l i n g the p a t i e n t as "mentally i l l . " The l i t e r a t u r e reviewed r e v e a l e d l i t t l e i n terms of responses by f a m i l i e s i n regard t o stigma. T h i s was an important concern f o r a l l f a m i l i e s i n the pre s e n t study, a f f e c t i n g a l l aspects of the h o s p i t a l -i z a t i o n . As d i s c u s s e d i n the p r e v i o u s chapter, f a m i l i e s d e a l t with the problem by becoming s e l e c t i v e about with whom to share the i n f o r m a t i o n , becoming p r o t e c t i v e of the p a t i e n t , and i n some cases d e v e l o p i n g c l o s e r f a m i l i a l r e l a t i o n s h i p s as they began t o r e l y on each other to preserve t h e i r p r i v a c y . They excluded o u t s i d e r s who would not understand, or who were p e r c e i v e d as having negative ideas about mental i l l n e s s . The n o t i o n of i n c r e a s e d s e n s i t i v i t y by f a m i l i e s t o such a t t i t u d e s i n others was a l s o a f i n d i n g i n Davis' (1980) study. She observed t h a t f a m i l i e s responded with anger when they p e r c e i v e d any evidence of stigma. Such 99 s e n s i t i v i t y was e v i d e n t i n t h e f a m i l i e s ' a c c o u n t s . R a t h e r t h a n an a n g r y r e a c t i o n , however, t h e y seemed t o a c c e p t t h e f a c t t h e s t i g m a e x i s t e d and a t t e m p t e d t o p r o t e c t t h e m s e l v e s and t h e p a t i e n t f r o m i t . The p e r c e p t i o n o f s t i g m a , t h e r e f o r e , p r o v i d e s an i m p o r t a n t u n d e r s t a n d i n g o f t h e i m p a c t o f t h e h o s p i t a l i z a -t i o n on t h e f a m i l i e s ' d a i l y l i v e s . The f a m i l y ' s a b i l i t y t o d e a l w i t h t h e m e n t a l i l l n e s s o f t h e p a t i e n t was a f f e c t e d g r e a t l y by t h e i r i m p r e s s i o n s o f t h e s t i g m a a s s o c i a t e d w i t h t h e i l l n e s s . The i s s u e o f s t i g m a was an i m p o r t a n t one w h i c h a f f e c t e d t h e i r i n t e r a c t i o n s w i t h t h e o t h e r f a m i l y members, f r i e n d s , n e i g h b o u r s , and c o - w o r k e r s . M a k i n g D e c i s i o n s R e g a r d i n g t h e C a r e o f t h e P a t i e n t . R e l i n q u i s h i n g o f r e s p o n s i b i l i t y f o r c a r e t o t h e h o s p i t a l was an i m p o r t a n t f a c t o r , a c c o r d i n g t o one s t u d y r e v i e w e d (Rose, 1 9 5 9 ) . I n t h e p r e s e n t s t u d y , however, t h e r e l i e f f r o m o n - g o i n g w o r r y r e f l e c t e d t h e f a m i l i e s ' b e l i e f s t h a t t h e h o s p i t a l was t h e " r i g h t p l a c e " f o r t h e r e l a t i v e t o be, r e g a r d l e s s o f t h e i r e v a l u a t i o n o f s p e c i f i c a s p e c t s o f t r e a t m e n t o r t h e h o s p i t a l e n v i r o n m e n t . T h i s f i n d i n g i s s i m i l a r t o t h a t r e p o r t e d b y Rose ( 1 9 5 9 ) , who a l s o f o u n d p o s i t i v e a t t i t u d e s t o w a r d t h e h o s p i t a l . H i s r e s p o n d e n t s , t h o u g h , r e l a t e d t h e r e l i n q u i s h i n g o f r e s p o n s i b i l i t y t o t h e a c c e p t a n c e o f " a u t h o r i t i e s " who h a d t a k e n o v e r and " r e l i e v e d them o f t h e b u r d e n " o f c a r i n g f o r t h e p a t i e n t (1959: 1 9 8 ) . 100 I n r e v i e w i n g Rose's s t u d y , one n o t e s t h a t t h e s e same r e s p o n d e n t s t e n d e d t o deny t h e " m e n t a l symptoms" o f t h e p a t i e n t s , and seemed t o use t h e h o s p i t a l t o e x c l u d e t h e p a t i e n t f r o m t h e f a m i l y u n i t and t h u s m a i n t a i n d e n i a l o f t h e p s y c h i a t r i c i l l n e s s . Such e x c l u s i o n w o u l d c e r t a i n l y be e a s i e r d u r i n g t h e t i m e o f Rose's s t u d y , when t h e a v e r a g e l e n g t h o f s t a y was n i n e y e a r s . F a m i l i e s i n t h e p r e s e n t s t u d y p e r c e i v e d t h e h o s p i t a l i z a t i o n as a p p r o p r i a t e as t h e y d e v e l o p e d a w a r e n e s s t h a t t h e p a t i e n t h a d p s y c h i a t r i c p r o b l e m s . The i n s t i t u t i o n a l n a t u r e o f p s y c h i a t r i c t r e a t m e n t d u r i n g t h e t i m e o f Rose's s t u d y i s a s i g n i f i c a n t v a r i a b l e t o c o n s i d e r when c o m p a r i n g h i s f i n d i n g s t o t h e p r e s e n t s t u d y . F a m i l i e s i n t h e p r e s e n t s t u d y may h a v e p e r c e i v e d p s y c h i a t r i c h o s p i t a l s , p a r t i c u l a r l y p s y c h i a t r i c u n i t s w i t h i n g e n e r a l h o s p i t a l s , as r e p r e s e n t i n g s h o r t e r h o s p i t a l i z a t i o n s . The p a r a l l e l s w i t h g e n e r a l h o s p i t a l s i n t e r m s o f t h e a c t u a l s e t t i n g may f a c i l i t a t e t h i s p e r c e p t i o n . I t may h a v e an e f f e c t on t h e f a m i l y ' s r e s p o n s e t o t h e p a t i e n t ' s a d m i s s i o n , as w e l l as t h e amount o f c o n t a c t and d e g r e e o f i n v o l v e m e n t t h e y e x p e r i e n c e d w i t h t h e p a t i e n t . F u r t h e r r e s e a r c h i s needed t o a s s e s s w h e t h e r t h e l o c a t i o n o f t h e p s y c h i a t r i c u n i t i n a g e n e r a l h o s p i t a l i n f l u e n c e s t h e f a m i l i e s ' e x p e r i e n c e o f p s y c h i a t r i c i l l n e s s . The o b s e r v a t i o n by o t h e r r e s e a r c h e r s ( F l e c k , 1965) t h a t f a m i l i e s f e l t g u i l t y a b o u t t h e p a t i e n t ' s h o s p i t a l i z a t i o n i s c o n s i s t e n t w i t h t h e f i n d i n g s o f t h i s 101 study. The degree t o which f a m i l i e s experienced t h i s g u i l t seemed r e l a t e d t o the r o l e they p l a y e d i n g e t t i n g the p a t i e n t admitted and the degree o f r e s p o n s i b i l i t y they accepted f o r causing the problem. The g u i l t f e e l i n g s experienced a f f e c t e d the i n i t i a l i n t e r a c t i o n s w i t h the p a t i e n t . F a m i l i e s d e s c r i b e d a watchfulness o r a t t e n t i v e n e s s toward the p a t i e n t ' s a c t i o n s and c o n v e r s a t i o n . They f e l t r e l i e v e d and more comfortable when they observed t h a t the p a t i e n t was "r e l a x e d " and " a l l r i g h t , " and t h a t he or she d i d not appear upset about the h o s p i t a l i z a t i o n . In two cases, however, the p a t i e n t s expressed ambivalence and t h i s i n c r e a s e d the g u i l t f e e l i n g s f o r the f a m i l i e s . A f u r t h e r o b s e r v a t i o n made i n the l i t e r a t u r e was t h a t f a m i l i e s f e l t a sense o f f a i l u r e when h o s p i t a l i z a t i o n o c c u r r e d ( F l e c k , 1965). T h i s f i n d i n g was not c l e a r l y supported by the presen t study. While the f a m i l i e s acknow-ledged t h a t they were no longer a b l e t o cope, t h e i r overwhelming f e e l i n g seemed t o be r e l i e f t h a t the " p r o f e s -s i o n a l s " were a v a i l a b l e and were now d e a l i n g with the problem. I t was p a r t i c u l a r l y e v i d e n t i n f a m i l i e s who had been l i v i n g with "the problem" f o r an extended p e r i o d of time, and who experienced r e l i e f when t h e i r f a m i l y f u n c t i o n i n g r e t u r n e d t o "normal." Changing E x p e c t a t i o n s . S e v e r a l r e s e a r c h e r s mentioned t h a t f a m i l i e s changed t h e i r e x p e c t a t i o n s o f the p a t i e n t s . 102 T h i s was seen as a coping mechanism used to d e a l w i t h the problem (Lewis and Zeichner, 1970). Such v a r i a b l e s as "enlightened a t t i t u d e s " and "degree of acceptance" of the p a t i e n t were a l s o examined and r e l a t e d t o the number of p r e v i o u s h o s p i t a l i z a t i o n s or to the s o c i a l c l a s s of the f a m i l y . The p r e s e n t study r e v e a l e d t h a t what f a m i l i e s expect of the p a t i e n t i s a more important v a r i a b l e than has been i n d i c a t e d by the l i t e r a t u r e . They began to expect l e s s of the p a t i e n t , p a r t i c u l a r l y i n terms of the f u t u r e , but a l s o continued to q u e s t i o n the a p p r o p r i a t e n e s s of doing so. R e l a t i o n s h i p s such as " a t t i t u d e s " and " s o c i a l c l a s s " were not as important t o c o n s i d e r , i n the f a m i l i e s ' views, as p r e v i o u s r e s e a r c h e r s have thought. T h i s s e c t i o n has d e s c r i b e d how v a r i o u s f a c t o r s , such as d i f f i c u l t i e s a c c e p t i n g the mental i l l n e s s p r i o r t o h o s p i t a l i z a t i o n and the stigma a s s o c i a t e d with mental i l l n e s s , were important aspects of the experience. They r e s u l t e d i n problems and concerns f o r the f a m i l i e s i n regard to t h e i r i n t e r a c t i o n s with the p a t i e n t and with o t h e r s . F a m i l i e s i d e n t i f i e d f e e l i n g s of g u i l t as w e l l as r e l i e f , i n d i c a t i n g a need f o r support and understanding from the s t a f f . The f o l l o w i n g d i s c u s s i o n w i l l examine what has been l e a r n e d about the e f f e c t of the experience on the f a m i l y ' s f u n c t i o n i n g . 103 Systems Theory: The Family Reacts to H o s p i t a l i z a t i o n Given t h a t the p r e s e n t study's purposes were to determine the meaning o f h o s p i t a l i z a t i o n to the f a m i l y and to i d e n t i f y problems and concerns they experienced, i t was expected t h a t t h i s body o f l i t e r a t u r e would focus more on the f a m i l y system's r e a c t i o n s t o s t r e s s and i t s attempts t o respond to i t to maintain system s t a b i l i t y . The r e s e a r c h reviewed w i t h i n t h i s framework was t h e r e f o r e examined f o r an understanding of how the h o s p i t a l i z a t i o n , as a new and s t r e s s f u l experience, a f f e c t e d f a m i l y f u n c t i o n i n g . The concept o f "burden" was a major focus of s e v e r a l of these s t u d i e s , the assumption being t h a t a m e n t a l l y i l l r e l a t i v e p l a c e s burdens upon the f a m i l y , and the tasks were to i d e n t i f y and d e a l with these burdens. W i t h i n the systems framework, burdens can be i n t e r p r e t e d as demands p l a c e d upon the system. The present study i n d i c a t e d t h a t t h i s concept i s too narrow a focus to d e s c r i b e the s t r e s s on the f a m i l y system. The f a m i l i e s d i d not r e l a t e the e f f e c t on t h e i r l i v e s i n t h i s sense o n l y . They responded t o the r e s e a r c h e r ' s q u e r i e s about problems, concerns, and e f f e c t on every-day l i v e s by r e l a t i n g the questions they had formulated i n t h e i r minds, and which were d i s c u s s e d i n other s e c t i o n s of t h i s chapter: What caused the problem? What have I done to c o n t r i b u t e to the problem? What does the f u t u r e hold? Events such as the admission process, v i s i t i n g p r a c t i c e s , and p a t i e n t passes were reviewed as p o t e n t i a l l y 104 d i f f i c u l t e p i s o d e s o r s t r e s s f u l e v e n t s f o r f a m i l i e s . As t h e y d e s c r i b e d t h e i r r e s p o n s e t o t h e s e e v e n t s , i t became o b v i o u s t h a t m eanings were i n f l u e n c e d by t h e i r e m o t i o n a l r e a c t i o n s t o t h e i l l n e s s , b y t h e i r u n d e r s t a n d i n g o f t h e meaning o f m e n t a l i l l n e s s , and by t h e i r c o n c e r n a b o u t t h e i r r e s p o n s i b i l i t y . The f i n d i n g s t h a t a s p e c t s o f d a i l y l i f e were a f f e c t e d , a s p e c t s s u c h as h o u s e h o l d r o u t i n e , s o c i a l and l e i s u r e l i f e , i ncome and f a m i l y employment ( G r a d and S a i n s b u r y , 1968: 271) were p r e s e n t e d i n two s t u d i e s r e v i e w e d . Some o f t h e s e f i n d i n g s a r e s u p p o r t e d b y t h e p r e s e n t s t u d y i n t h a t d i s r u p t i o n s o f n o r m a l r o u t i n e s were d e s c r i b e d by f a m i l i e s b o t h p r i o r t o and d u r i n g h o s p i t a l i z a t i o n o f t h e p a t i e n t . E f f e c t s on d a i l y r o u t i n e s and n o r m a l a c t i v i t i e s seemed t o r e c e i v e l e s s a t t e n t i o n o r were p e r c e i v e d as l e s s i m p o r t a n t t o t h e f a m i l i e s . T h e y s p e n t more t i m e t a l k i n g a b o u t t h e e f f e c t on t h e i r own e m o t i o n a l h e a l t h and t h e i r a b i l i t y t o d e a l w i t h t h e i r e m o t i o n a l r e a c t i o n s t o t h e i l l n e s s . The need f o r s u p p o r t i v e c a r e was a s s e s s e d i n one s t u d y . I n t h e p r e s e n t s t u d y , s u c h a c o n c e p t was i n t e r p r e t e d by t h e f a m i l i e s as t h e i r n eed f o r "someone t o t a l k t o . " As one f a m i l y e x p l a i n e d : "Even i f t h e y d o n ' t h a v e t h e a n s w e r s , i t w o u l d h e l p i f t h e y w o u l d l i s t e n . " They h a d g r e a t d i f f i c u l t i e s i n d e a l i n g w i t h t h e l a c k o f c o n t a c t s w i t h s t a f f , t h e a b s e n c e o f i n c l u s i o n i n t r e a t m e n t , and t h e s e e m i n g l a c k o f r e c o g n i t i o n o r u n d e r s t a n d i n g t h a t t h e y 105 would continue t h e i r c l o s e involvement with the p a t i e n t d u r i n g h o s p i t a l i z a t i o n . The need f o r more i n f o r m a t i o n about mental i l l n e s s and the treatment the p a t i e n t s r e c e i v e d i n p s y c h i a t r i c hos-p i t a l s was i d e n t i f i e d i n the l i t e r a t u r e . T h i s was supported i n the p r e s e n t study. Lack of i n f o r m a t i o n concerning many aspects o f the i l l n e s s and the h o s p i t a l i z a t i o n was c i t e d as a hindrance i n t h e i r a b i l i t y t o d e a l with the s i t u a t i o n , which then l e f t the f a m i l i e s f e e l i n g h e l p l e s s and d i r e c t i o n l e s s . Although a l l f a m i l i e s d e s c r i b e d g r e a t d i f f i c u l t i e s i n d e a l i n g with these concerns, they seemed to adopt a p a s s i v e stance. They were unable t o d e a l w i t h t h i s concern by i n i t i a t i n g c o n t a c t s , or by a s k i n g q u e s t i o n s t o determine who was " i n charge." I t seemed to be a f e a t u r e o f these f a m i l i e s t h a t they "never got around t o i t , " although i t was a major concern. They e i t h e r p e r c e i v e d themselves as i n a d e q u a t e — u n a b l e to ask the r i g h t q u e s t i o n s — o r they r e l i e d on t h e i r n o t i o n s o f the r o l e s o f h e a l t h p r o f e s -s i o n a l s as informants about the p a t i e n t ' s i l l n e s s , and assumed t h a t e v e n t u a l l y they would be approached. Although not s t a t e d c l e a r l y by f a m i l i e s i n t h i s or other s t u d i e s , i t i s a l s o p o s s i b l e t h a t the presence o f g u i l t f e e l i n g s a f f e c t e d t h e i r a b i l i t y i n i t i a l l y t o i n t e r a c t with s t a f f or p s y c h i a t r i c nurses. F u r t h e r r e s e a r c h would be needed to c l a r i f y the important elements o f the s t a f f - f a m i l y i n t e r a c t i o n i n such a s e t t i n g . 106 When h e l p from s t a f f was not forthcoming, f a m i l i e s u t i l i z e d o ther methods t o gather i n f o r m a t i o n . They gave meaning to events they observed or c o n v e r s a t i o n s they heard, they r e l i e d on r e l a t i v e s f o r support, or as most f a m i l i e s d e s c r i b e d i t , they t r i e d t o be p a t i e n t , w a i t i n g f o r t h e i r r e l a t i v e to get b e t t e r . I t became c l e a r t h a t events, s i t u a t i o n s or even c h a r a c t e r i s t i c s o f a p s y c h i a t r i c h o s p i t a l i z a t i o n t h a t h e a l t h p r o f e s s i o n a l s take f o r granted take on g r e a t s i g n i f i c a n c e f o r f a m i l i e s . The concept of a " s u b - c u l t u r e " was o f f e r e d by t h i s r e s e a r c h e r as a c o n c e p t u a l i z a t i o n of the d i f f i c u l t i e s experienced by f a m i l i e s i n a s s i m i l a t i n g the v a r i o u s aspects o f the h o s p i t a l i z a t i o n i n t o t h e i r own world. A heightened awareness was i d e n t i f i e d as a method of g a t h e r i n g new i n f o r m a t i o n about t h i s " s u b c u l t u r e . " They u t i l i z e d whatever was a v a i l a b l e t o them to do t h i s : what they saw and what they heard, d u r i n g chance encounters with p a t i e n t s and s t a f f . In p r e s e n t i n g the accounts i n the previous chapter, i t was c l e a r t h a t f a m i l i e s had n o t i o n s about t h e i r own involvement i n the s i t u a t i o n , the k i n d s o f treatment they expected, and t h e i r e x p e c t a t i o n s f o r the f u t u r e . In a l l these areas, they wanted "expert" o p i n i o n to e i t h e r r e f u t e or support t h e i r " l a y " n o t i o n s , as w e l l as to p r o v i d e a d d i t i o n a l i n f o r m a t i o n not r e a d i l y a v a i l a b l e to non-p r o f e s s i o n a l s . F a m i l i e s i d e n t i f i e d the need to be acknowledged as 107 r e l a t i v e s who were i n v o l v e d i n t h e t r e a t m e n t o f t h e p a t i e n t . The need t o f e e l c o m f o r t a b l e w i t h i n t h e h o s p i t a l e n v i r o n m e n t was i d e n t i f i e d as a f a c t o r t h a t i n f l u e n c e d t h e i r r e a c t i o n s and t h e i r a b i l i t y t o a s s i m i l a t e t h e e x p e r i e n c e i n t o f a m i l y f u n c t i o n i n g . B e i n g a b l e t o i d e n t i f y a c o n s i s t e n t p e r s o n who w o u l d s p e n d t i m e w i t h them, h a v i n g some p r i v a c y f o r v i s i t i n g t h e i r r e l a t i v e , and h a v i n g c o n t a c t w i t h o t h e r f a m i l i e s f o r t h e p u r p o s e o f m u t u a l s u p p o r t were f a c t o r s i d e n t i f i e d as i m p o r t a n t i n t h e a d a p t a t i o n t o t h e s t r e s s f u l e n v i r o n m e n t . Most f a m i l i e s s t a t e d t h a t f a m i l y m e e t i n g s w i t h s t a f f w o u l d h a v e been h e l p f u l t o them i n u n d e r s t a n d i n g t h e e x p e r i e n c e , a f i n d i n g t h a t s u p p o r t s F l e c k ' s (1965) d i s c u s -s i o n o f t h e b e n e f i t o f f a m i l y g r o u p s . They wanted t h e o p p o r t u n i t y t o s h a r e t h e i r v i e w s a b o u t what had h appened, and t o s h a r e t h e i r p e r c e p t i o n s o f t h e p a t i e n t a t home w i t h t h e s t a f f c a r i n g f o r t h e i r r e l a t i v e . They wanted t o g i v e t h e i r i n t e r p r e t a t i o n s o f what was h a p p e n i n g t o t h e p a t i e n t w h i l e he was i n t h e h o s p i t a l , and t h e y wanted an o p p o r t u n i t y t o a s k q u e s t i o n s . The i s s u e o f c o n t r o l b y f a m i l i e s o v e r a s p e c t s o f t h e h o s p i t a l i z a t i o n was a d d r e s s e d i n one s t u d y ( G r e e n l y , 1972) i n r e l a t i o n t o t h e t i m i n g o f t h e p a t i e n t ' s d i s c h a r g e . The a u t h o r c o n c l u d e d t h a t f a m i l i e s d i d h a v e c o n t r o l o v e r t h e d i s c h a r g e . I n t h e p r e s e n t s t u d y , i t i s n o t e d t h a t f a m i l i e s do i n d e e d h a v e an o p i n i o n a b o u t t h e d i s c h a r g e . However, w h i l e 108 most f a m i l i e s d i s c u s s e d the d i s c h a r g e i n terms of a concern t h a t the p a t i e n t was not ready, they seemed u n w i l l i n g , or p e r c e i v e d themselves as unable, to a f f e c t t h a t d e c i s i o n . As i n a l l other aspects of the h o s p i t a l i z a t i o n , when f a m i l i e s experienced concerns or c o n f u s i o n , they were unable t o i n i t i a t e the c o n t a c t with s t a f f t o a l l e v i a t e these concerns. The impression g i v e n i n Greenly's study of the power of the f a m i l y to i n f l u e n c e d e c i s i o n s i s not s u b s t a n t i a t e d by the f a m i l y ' s accounts; they i n s t e a d experienced f e e l i n g s of powerlessness and r e s i g n a t i o n . Family f u n c t i o n i n g was s e v e r e l y a f f e c t e d by the l a c k of i n t e r n a l support systems a v a i l a b l e t o handle present and f u t u r e s t r e s s e s . T h i s p r e s e n t a t i o n has o f f e r e d some support f o r p r e v i o u s r e s e a r c h i n terms of the e f f e c t s of h o s p i t a l -i z a t i o n on f a m i l y f u n c t i o n i n g . The d i s c u s s i o n has, however, moved beyond those f i n d i n g s , to i d e n t i f y i n more depth and d e t a i l the needs of the f a m i l i e s as a r e s u l t of the experience. I t has thus emphasized what f a m i l i e s f e l t they needed from h e a l t h care workers. The next s e c t i o n w i l l a l s o d i s c u s s the needs of f a m i l i e s , as the f i n d i n g s of p r e v i o u s n u r s i n g r e s e a r c h are examined. Nursing Research of the Family of the P s y c h i a t r i c P a t i e n t A s i g n i f i c a n t c o n t r i b u t i o n t o the area under study was found i n L e a v i t t ' s (1975) study o f the d i s c h a r g e phase o f the h o s p i t a l i z a t i o n and i t s e f f e c t on the f a m i l y . For 109 t h i s r e a s o n , and a l s o b e c a u s e i t i s t a k e n as r e p r e s e n t a t i v e o f n u r s i n g r e s e a r c h i n t h e a r e a , i t s r e l a t i o n s h i p t o t h e p r e s e n t s t u d y w i l l now be d i s c u s s e d . L e a v i t t a l s o examined and r e p o r t e d t h a t f a m i l i e s e x p e r i e n c e d m a j o r d i s r u p t i o n s i n t h e i r l i v e s p r i o r t o h o s p i t a l i z a t i o n . The f a m i l i e s i n t h e p r e s e n t s t u d y d i d n o t d e s c r i b e i t t h i s way. T h ey d i s t i n g u i s h e d t h e o n - g o i n g b e h a v i o u r ( s o m e t h i n g t h e y a t t e m p t e d t o a d a p t t o ) f r o m t h e s p e c i f i c c r i s i s e v e n t w h i c h p r e c i p i t a t e d t h e a d m i s s i o n . I t became a m u l t i - d i m e n s i o n a l d e c i s i o n - m a k i n g p r o c e s s w i t h c h a r a c t e r i s t i c s o f a m b i v a l a n c e and r a t i o n a l i z a t i o n . Our u n d e r s t a n d i n g o f t h i s d e c i s i o n - m a k i n g p r o c e s s must i n c l u d e an a p p r e c i a t i o n o f t h e f a m i l y ' s need t o m a i n t a i n i t s f u n c t i o n i n g as l o n g as p o s s i b l e w i t h t h e r e s o u r c e s i t h a s . A f u r t h e r f i n d i n g i n L e a v i t t ' s s t u d y was t h e i d e n t i -f i c a t i o n by f a m i l i e s o f " u n c o n t r o l l a b l e v a r i a b l e s " as c a u s e s o f t h e m e n t a l i l l n e s s . I n t h e p r e s e n t s t u d y , t h e s e l f - e x a m i n a t i o n by f a m i l y members was much more e v i d e n t , and became a p e r v a s i v e theme f o r them t h r o u g h o u t t h e e x p e r i e n c e . T h i s i s n o t t o s a y o t h e r v a r i a b l e s were n o t c o n s i d e r e d . F o r t h e s e f a m i l i e s " o t h e r " v a r i a b l e s were g i v e n l e s s i m p o r t a n c e i n t e r m s o f c o n t r i b u t i n g t o t h e p r o b l e m . One m i g h t a r g u e t h a t s e l f blame w o u l d be a more i m p o r t a n t q u e s t i o n f o r a p a r e n t o f a p a t i e n t . The p r e s e n t s t u d y , however, i n d i c a t e d s i m i l a r r e a c t i o n s f o r f a m i l y members i n v a r i o u s r o l e s . The f a m i l i e s i n L e a v i t t ' s s t u d y i d e n t i f i e d 110 " i n t e r a c t i o n with o t h e r s " w i t h i n the h o s p i t a l s e t t i n g as h e l p f u l to the p a t i e n t . Again, the f a m i l i e s i n the present study p e r c e i v e d such therapy with ambivalent f e e l i n g s , and i f the f a m i l y ' s involvement was not addressed i n treatment, then the group therapy f o r the p a t i e n t was seen t o be of l i m i t e d v a l u e . Since the focus o f L e a v i t t ' s r e s e a r c h was the imminent d i s c h a r g e of the p a t i e n t , she presented much data on the impact of t h i s aspect of h o s p i t a l i z a t i o n on the f a m i l i e s . I t was d e s c r i b e d as a c r i s i s , w ith f a m i l i e s e x p e r i e n c i n g f e e l i n g s of t u r m o i l and u n c e r t a i n t y about the p a t i e n t ' s f u t u r e . These f i n d i n g s are w e l l supported by the f a m i l i e s ' accounts i n the p r e s e n t study. As w e l l , these f a m i l i e s expressed pessimism or apprehension about the f u t u r e because they had not l e a r n e d how they c o u l d p r o v i d e on-going support t o the p a t i e n t . The c r i t e r i a f o r d i s c h a r g e i n L e a v i t t ' s study were seen to be those of the s t a f f , and not those of the f a m i l y . The author has suggested t h a t f a m i l i e s acquiesced to the s t a f f d e c i s i o n because they hoped t h a t d i s charge meant the p a t i e n t was cured. While the f a m i l i e s i n the p r e s e n t study d i d not openly d i s a g r e e w i t h the discharge, they d i d seem to experience f e e l i n g s t h a t the problem was not over. They d i d not seem t o accept the p a t i e n t as "cured," but expressed a "wait and see" a t t i t u d e which i m p l i e d t h a t 'they would expect l e s s of the p a t i e n t i n the f u t u r e . The presence of such an a t t i t u d e , however, cannot I l l be viewed i n i s o l a t i o n ; f o r these f a m i l i e s i t was co n s i d e r e d w i t h i n the context of the e n t i r e experience and was i n f l u e n c e d by the f a m i l i e s ' b e l i e f s about mental i l l n e s s , and the e f f e c t of t h e i r experiences on changing or c o n f i r m i n g those b e l i e f s . I t was not p o s s i b l e t o i d e n t i f y at which p o i n t the di s c h a r g e became a concern f o r f a m i l i e s . For some, i t became a q u e s t i o n they r a i s e d very soon a f t e r admission. Again, i t was not a s t r a i g h t f o r w a r d i s s u e c o n s i s t i n g of debates about the t i m i n g of d i s c h a r g e . Rather, i t became a f o c a l p o i n t of the whole e v a l u a t i o n process i n terms of " i s t h i s going t o make a d i f f e r e n c e ? " I t e l i c i t e d s e n s i t i v e d i s c u s s i o n s of f e e l i n g s by f a m i l i e s , a l l of whom f e l t i t was important f o r them to understand "what was going on." While they c o u l d r e s i g n themselves to being excluded from the p a t i e n t w h i l e he was i n h o s p i t a l , they a l l p e r c e i v e d the d i s c h a r g e as an important event t h a t a f f e c t e d both t h e i r own and the p a t i e n t ' s f u t u r e . Thus, the impact of h o s p i t a l i z a t i o n d i d not end when the p a t i e n t was di s c h a r g e d . T h i s d i s c u s s i o n has focused on the p e r c e p t i o n s and needs of the f a m i l y d u r i n g a s p e c i f i c phase of the h o s p i t a l i z a t i o n : the d i s c h a r g e . I t has f u r t h e r p r o v i d e d i n f o r m a t i o n about the r e l a t i o n s h i p of those needs t o other aspects of the h o s p i t a l i z a t i o n . SUMMARY The f i n d i n g s o f p r e v i o u s r e s e a r c h were shown to be co r r o b o r a t e d by t h i s study's p r e s e n t a t i o n o f the f a m i l y ' s p e r s p e c t i v e . The h o s p i t a l i z a t i o n was d e s c r i b e d as an i n t e g r a l p a r t of the i l l n e s s experience. The i s s u e of stigma was shown to be an important one f o r f a m i l i e s , as was the i s s u e of c a u s a l i t y . Both of these areas were h i g h l i g h t e d as a r e s u l t o f t h i s study. The e f f e c t on the f a m i l y ' s i n t e r a c t i o n s with o t h e r s and on the f a m i l y ' s d a i l y f u n c t i o n i n g were other areas i n which the present study o f f e r e d new i n s i g h t s . The accounts o f the f a m i l i e s i n t h i s study t h e r e f o r e have s i g n i f i c a n t 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 , education, and r e s e a r c h . Those i m p l i c a t i o n s , as w e l l as the c o n c l u s i o n s of the study, w i l l be d i s c u s s e d i n the next chapter. CHAPTER VI SUMMARY, CONCLUSIONS, IMPLICATIONS FOR NURSING SUMMARY T h i s q u a l i t a t i v e study was designed t o e l i c i t the fa m i l y ' s p e r s p e c t i v e on t h e i r experience o f the f i r s t p s y c h i a t r i c h o s p i t a l i z a t i o n o f a r e l a t i v e . U t i l i z i n g a phenomenological p e r s p e c t i v e , the study focused on the meaning t h a t the p a r t i c i p a n t s gave t o events t h a t o c c u r r e d p r i o r t o and d u r i n g the h o s p i t a l i z a t i o n . U n s t r u c t u r e d i n t e r v i e w s were conducted with f a m i l y members i n t h e i r homes d u r i n g the p a t i e n t ' s h o s p i t a l -i z a t i o n p e r i o d . The i n t e r v i e w s were the forum by which the p a r t i c i p a n t s c o n s t r u c t e d accounts o f t h e i r e xperiences. They e x p l a i n e d how they i n t e r p r e t e d events, how they made sense o f u n f a m i l i a r events or surroundings, and they i d e n t i f i e d t h e i r needs and concerns and d i s c u s s e d how they coped with them. They d e s c r i b e d t h e i r emotional r e a c t i o n s to the experience, and they d i s p l a y e d t h e i r c o g n i t i v e e f f o r t s t o understand the p a t i e n t s . The purpose o f the study was not t o t e s t a hypo-t h e s i s or c o n s t r u c t a theory o f f a m i l i e s ' responses t o mental i l l n e s s . Rather, the aim of t h i s r e s e a r c h was to 113 114 i n c r e a s e understanding o f what the experience was l i k e f o r those f a m i l i e s i n v o l v e d , by a l l o w i n g them t o speak f o r themselves and share t h e i r i n t e r p r e t a t i o n o f the meaning o f events. The data thus o b t a i n e d cannot, t h e r e f o r e , be r e p l i c a t e d . They can, however, be used t o i n c r e a s e awareness of the importance o f the f a m i l y ' s p e s p e c t i v e . The p a r t i c i p a n t s ' accounts were presented i n d e t a i l i n Chapter IV, and d i s c u s s e d i n r e l a t i o n to the l i t e r a t u r e i n Chapter V. The f i n d i n g s w i l l be b r i e f l y summarized here: The processes by which f a m i l i e s d e a l t with v a r i o u s aspects o f the h o s p i t a l i z a t i o n experience were i d e n t i f i e d . The process of acknowledging h o s p i t a l i z a t i o n as a s o l u t i o n t o a problem was d i s c u s s e d i n terms o f how f a m i l i e s grad-u a l l y changed t h e i r i n t e r p r e t a t i o n o f the p a t i e n t ' s behav-i o u r . The process by which they reframed past events t o make sense o f the presen t was presented i n terms o f t h e i r acknowledgement of the p a t i e n t as s i c k , and i n terms o f t h e i r o p i n i o n t h a t they had i n some way c o n t r i b u t e d t o the development of the i l l n e s s . T h e i r e f f o r t s t o a s s i m i l a t e new and strange environments and customs were d e s c r i b e d as they experienced p s y c h i a t r i c h o s p i t a l i z a t i o n as " d i f -f e r e n t " from other h o s p i t a l i z a t i o n s and "medical" treatments. F i n a l l y , the process by which they d e a l t with t h e i r concerns about the f u t u r e was d i s c u s s e d w i t h i n the context o f t h e i r e x p e c t a t i o n s and t h e i r coping methods. The d i s c u s s i o n o f processes thus h i g h l i g h t e d the 115 dynamic and complex nature o f the experience f o r these f a m i l i e s . While the processes were presented i n d i v i d -u a l l y , the reader has been cautioned t h a t they were i n no way d i s c r e t e or s e q u e n t i a l ; f o r these f a m i l i e s , each process i n f l u e n c e d the o t h e r . Incongruencies were noted between processes, w h i l e t h i n k i n g and f e e l i n g aspects were a l s o d i s c u s s e d as i n t e r t w i n e d elements o f the o v e r a l l process o f "making sense" of the i l l n e s s and the h o s p i t a l e x perience. CONCLUSIONS The data obtained i n t h i s study r e p r e s e n t the f a m i l i e s ' p e r s p e c t i v e o f the h o s p i t a l i z a t i o n experience, and r e v e a l a complex i n t e r - p l a y o f p r o c e s s e s . Conclusions t h a t may be drawn from t h i s p r e s e n t a t i o n w i l l now be d i s c u s s e d . F a m i l i e s view the p s y c h i a t r i c h o s p i t a l i z a t i o n as d i f f e r e n t from g e n e r a l h o s p i t a l i z a t i o n , and t h e r e f o r e have fewer resources t o c a l l upon when d e a l i n g with the mental i l l n e s s o f a r e l a t i v e . They f e e l a f f e c t e d by what happens t o the p a t i e n t . T h e r e f o r e , i t i s important t o acknowledge the presence o f f a m i l i e s i n the treatment o f p a t i e n t s , and to l i s t e n to them as they i d e n t i f y t h e i r needs. The stigma attached t o mental i l l n e s s by s o c i e t y i s a major i s s u e f o r f a m i l i e s . I t a f f e c t s t h e i r i n t e r a c t i o n s 116 with others o u t s i d e the f a m i l y u n i t , and thus s e v e r e l y r e s t r i c t s the support they can use t o d e a l with the s i t u a t i o n . F a m i l i e s experience a v a r i e t y o f emotions i n response to v a r i o u s aspects of the h o s p i t a l i z a t i o n , from g u i l t at the time of admission to r e l i e f t h a t the p a t i e n t i s being h e l p e d to apprehension about the f u t u r e . They need h e l p to understand and d e a l with these r e a c t i o n s . F a m i l i e s do not have the r e s o u r c e s t o d e a l with the " c u l t u r e " o f the p s y c h i a t r i c h o s p i t a l on t h e i r own. They may be unable to be a s s e r t i v e , t o d i r e c t l y v o i c e t h e i r concerns, or to ask t h a t t h e i r needs be met. Thus, t h e i r i n a b i l i t y t o i n i t i a t e c o n t a c t s with s t a f f does not mean they have no need of such c o n t a c t . F a m i l i e s need i n f o r m a t i o n . They need to know more about c u r r e n t p e r s p e c t i v e s on mental i l l n e s s and the e f f e c t s of t h e i r r e l a t i o n s h i p with the p a t i e n t . They need to understand the i m p l i c a t i o n s o f the i l l n e s s f o r t h e i r own and f o r the p a t i e n t ' s f u t u r e . F a m i l i e s have t h e i r own n o t i o n s of what mental i l l n e s s i s . They r e l y on those n o t i o n s to e x p l a i n what i s happening to t h e i r r e l a t i v e . At the same time, however, they assume t h a t the h o s p i t a l w i l l e i t h e r c o n f i r m or deny these n o t i o n s . The q u e s t i o n o f c a u s a l i t y of the i l l n e s s i s an important one f o r f a m i l i e s . They examine t h e i r own l i v e s , i n the p a s t and i n the present, and are o f t e n too ready to accept blame f o r what has happened to t h e i r r e l a t i v e . I t 117 a l s o a f f e c t s t h e i r p e r c e p t i o n s o f t h e f u t u r e and r e s u l t s i n f e e l i n g s o f a p p r e h e n s i o n f o r t h e m s e l v e s and t h e p a t i e n t . When g i v e n t h e o p p o r t u n i t y and when a s k e d a b o u t t h e i r c o n c e r n s , f a m i l i e s a r e a b l e t o a r t i c u l a t e what i s i m p o r t -a n t t o them a b o u t t h i s e x p e r i e n c e — t h e i r e m o t i o n a l r e s p o n s e , t h e i r needs and c o n c e r n s , t h e i m p a c t on t h e i r l i v e s . IMPLICATIONS FOR NURSING PRACTICE The aim o f t h i s s t u d y was t o i n c r e a s e u n d e r s t a n d i n g o f t h e f a m i l y ' s e x p e r i e n c e o f h o s p i t a l i z a t i o n i n o r d e r t o p r o v i d e b e t t e r n u r s i n g c a r e t o f a m i l i e s . The f i n d i n g s o f t h e s t u d y s u g g e s t s e v e r a l d i r e c t i v e s f o r n u r s i n g p r a c t i c e . The meaning o f " m e n t a l i l l n e s s " h a s b e e n d i s c u s s e d i n t e r m s o f t h e f a m i l y ' s n o t i o n s o f c a u s a l i t y , t r e a t m e n t , and i t s i m p l i c a t i o n s f o r t h e f u t u r e . What h a s become o b v i o u s i s t h a t e a c h f a m i l y h a s i t s own u n d e r s t a n d i n g o f " m e n t a l i l l n e s s " w h i c h i n f l u e n c e s how t h e f a m i l y d e a l s w i t h t h i s e p i s o d e i n t h e i r l i v e s . I t i s i m p o r t a n t , t h e n , f o r n u r s e s i n t e r a c t i n g w i t h t h e s e f a m i l i e s t o become aware o f t h e f a m i l y ' s d e f i n i t i o n , and t o a v o i d a s s u m i n g s h a r e d m eaning. K l e i n m a n (1978) a d v o c a t e s t h e e l i c i t i n g o f t h e c l i e n t ' s " e x p l a n a t o r y model" i n o r d e r t o u n d e r s t a n d how i t g o v e r n s t h e i r b e h a v i o u r . 118 The changing o r i e n t a t i o n r e g a r d i n g the concept "mental i l l n e s s " i n the f i e l d o f n u r s i n g i s r e f l e c t e d i n the d i s c u s s i o n by Wilson and K n e i s l (1979), who advocate an awareness of the s o c i a l , c u l t u r a l , and i n t e r p e r s o n a l f a c t o r s t h a t a f f e c t how behaviour i s judged (1979:5). The f i n d i n g s o f t h i s study i n d i c a t e , however, t h a t p u b l i c o p i n i o n about mental i l l n e s s i s not changing as q u i c k l y as p r o f e s s i o n a l views. F a m i l i e s blame t h e m s e l v e s r e g a r d l e s s o f the messages g i v e n to them by h e a l t h p r o f e s s i o n a l s . Nurses must be s e n s i t i v e t o t h i s process o f f a m i l i e s examining t h e i r own behaviour. They must be ready to a n t i c i p a t e q u e s t i o n s about such c a u s a l i t y and they must be aware o f the i n d i r e c t messages they g i v e to f a m i l i e s when i n t e r a c t i n g with them. The concept of stigma has proven to be an important one f o r the p a r t i c i p a n t s i n t h i s study. Nurses must be aware of t h i s added s t r e s s experienced by f a m i l i e s , and the r e s t r i c t i v e e f f e c t i t has on t h e i r a b i l i t y t o e l i c i t support from o t h e r s . The need t o support f a m i l i e s , t h e r e f o r e becomes an important f u n c t i o n o f the nurse s i n c e she u s u a l l y has the most frequent c o n t a c t s with them. The importance o f a comprehensive o r i e n t a t i o n t o the p s y c h i a t r i c ward has been i d e n t i f i e d by the p a r t i c i p a n t s o f the study who d i d not understand the r u l e s or the p h i l o s o p h i e s o f treatment. As a r e s u l t , they c o u l d not accept some t h e r a p e u t i c s t r a t e g i e s and were l e f t f e e l i n g 119 concerned t h a t t h e i r r e l a t i v e had not been helped. Such concern c o u l d be a l l e v i a t e d i f e f f o r t s were made a t the b e g i n n i n g of the h o s p i t a l i z a t i o n to e x p l a i n treatment r a t i o n a l e s t o f a m i l i e s and a l l o w them to v o i c e t h e i r concerns. The p a r t i c i p a n t s i n t h i s study were ab l e to i d e n t i f y t h e i r need f o r i n f o r m a t i o n . T h i s has i m p l i c a t i o n s f o r the type and content of f a m i l y groups t h a t may be i n s t i t u t e d . The need f o r such a group i s c l e a r ; however, i t i s import-ant to d i s t i n g u i s h , as these f a m i l i e s have done, between t h e i r needs f o r i n f o r m a t i o n and t h e i r needs f o r emotional support. The a b i l i t y o f f a m i l i e s t o p r o v i d e emotional support to each other i s a l s o an important f a c t o r t o con-s i d e r i n d e s i g n i n g f a m i l y groups. The need f o r i n f o r m a t i o n , coupled with the s t i l l p r e -v a l e n t e f f e c t s of stigma, has important i m p l i c a t i o n s f o r p s y c h i a t r i c nurses working i n a v a r i e t y of s e t t i n g s . The need to educate the p u b l i c , t o disseminate i n f o r m a t i o n about mental i l l n e s s i s an important f u n c t i o n o f nurses, working i n e i t h e r the community or the h o s p i t a l s e t t i n g , who have c o n t a c t with groups i n the community. The f i n d i n g s of t h i s study a l s o have i m p l i c a t i o n s f o r n u r s i n g a d m i n i s t r a t i o n . The f e e l i n g of i s o l a t i o n d e s c r i b -ed by f a m i l i e s and t h e i r wish to have a "contact" person or a c o n s i s t e n t person to approach, are important c o n s i d -e r a t i o n s i n d e s i g n i n g " f a m i l y - o r i e n t e d " p s y c h i a t r i c u n i t s . The focus of n u r s i n g on f a m i l i e s as c l i e n t s i m p l i e s 120 t h a t i f n u r s i n g i s t o c o n s i d e r the meeting o f these f a m i l y needs, then resources must be budgeted f o r t h a t purpose. S t a f f time i s r e q u i r e d t o develop and p a r t i c i p a t e i n f a m i l y groups, f o r example, as one forum f o r c o n t i n u i n g work with f a m i l i e s . The importance of g i v i n g support and guidance to f a m i l i e s r e g a r d i n g the f u t u r e has been d e f i n e d . They must be g i v e n the o p p o r t u n i t y t o ask qu e s t i o n s and to d i s c u s s t h e i r e x p e c t a t i o n s and plans f o r the f u t u r e . These p a r t i c i p a n t s have asked f o r i n f o r m a t i o n r e g a r d i n g what they should do d i f f e r e n t l y . T h e i r questions should be answered as h o n e s t l y and completely as p o s s i b l e . The need f o r follow-up care f o r p a t i e n t s has been re c o g n i z e d . The need f o r follow-up support f o r f a m i l i e s has been n e g l e c t e d . F i n a l l y , i t i s of o v e r a l l importance f o r nurses t o acknowledge the f a m i l y : t o r e c o g n i z e t h a t the f a m i l y i s i n v o l v e d i n , and a f f e c t e d by, what i s happening t o the p a t i e n t . I t i s necessary t o communicate such r e c o g n i t i o n to f a m i l i e s , t o c r e a t e a c l i m a t e i n which they f e e l they can ask qu e s t i o n s or admit t h e i r concerns. IMPLICATIONS FOR NURSING EDUCATION The importance o f c o n s i d e r i n g f a m i l i e s as c l i e n t s i s a n o t i o n t h a t should be developed w i t h i n n u r s i n g 121 c u r r i c u l a . A f o c u s on t h e needs o f f a m i l i e s o f p s y c h i -a t r i c p a t i e n t s h a s b e e n shown b y t h e l i t e r a t u r e and by t h e f i n d i n g s o f t h i s s t u d y t o be an i m p o r t a n t one. Such a f o c u s w o u l d r e q u i r e t h e d e v e l o p m e n t o f s p e c i f i c s k i l l s by n u r s e s , as w e l l as e x p o s u r e t o t h e v a r i o u s t h e o r e t i c a l frameworks o f t h e f a m i l y . S k i l l s i n a s s e s s i n g f a m i l y needs s h o u l d be a f o c u s o f f a m i l y - o r i e n t e d n u r s i n g c u r r i c u l a . The d e v e l o p m e n t o f s k i l l s i n i n t e r a c t i n g w i t h f a m i l i e s i n g r o u p s s h o u l d a l s o be an o b j e c t i v e . C u r r i c u l a s h o u l d a l s o f o c u s on h o s p i t a l -b a s e d p s y c h i a t r i c c a r e as a p a r t o f an i n t e g r a t e d s y s t e m , so t h a t t h e needs o f t h e f a m i l y p r i o r t o and a f t e r d i s c h a r g e a r e r e c o g n i z e d . An u n d e r s t a n d i n g s h o u l d be d e v e l o p e d o f t h e f o r c e s w h i c h c r e a t e a t t i t u d e s o f s t i g m a t o w a r d m e n t a l i l l n e s s , so t h a t t h e n u r s e becomes aware o f h e r r o l e i n c h a n g i n g a t t i t u d e s and l e a r n s t o d e a l w i t h t h e e f f e c t s o f s t i g m a on t h e f a m i l y . IMPLICATIONS FOR NURSING RESEARCH The f i n d i n g s o f t h i s s t u d y h a v e h i g h l i g h t e d t h e need f o r f u r t h e r r e s e a r c h i n t h e a r e a o f t h e f a m i l y o f t h e p s y c h i a t r i c p a t i e n t . S u b s e q u e n t s t u d i e s w o u l d b e n e f i t f r o m more i n t e n s i v e d a t a g a t h e r i n g methods. The r i c h n e s s o f t h e d a t a as p r e s e n t e d h e r e c o u l d be e n h a n c e d by t h e use 122 of p a r t i c i p a n t - o b s e r v a t i o n , as w e l l as i n t e r v i e w s p r i o r to admission and a f t e r d i s c h a r g e . T h i s would h e l p to develop a more complete understanding of the meaning of the i l l n e s s experience f o r f a m i l i e s . The d i f f i c u l t i e s c r e a t e d by f e e l i n g s of stigma were noted i n t h i s study. I t would be u s e f u l t o determine i n f u t u r e r e s e a r c h the extent to which experiences w i t h i n the h o s p i t a l would be e f f e c t i v e i n changing or a t l e a s t i n f l u e n c i n g these negative experiences f o r f a m i l i e s . The need f o r f a m i l y groups has been suggested i n t h i s study. F a m i l i e s have expressed a need f o r support, i n f o r -mation, and c o n t a c t with o t h e r s to share t h e i r exper-i e n c e s . The a p p r o p r i a t e n e s s of a group s i t u a t i o n to meet these needs should be addressed i n f u t u r e r e s e a r c h . T h i s study has h i g h l i g h t e d the f a c t t h a t f a m i l i e s can indeed speak f o r themselves., They are a b l e to d e f i n e t h e i r needs, and can judge what has helped to meet those needs. There-f o r e , f u t u r e s t u d i e s should c o n s i d e r f a m i l y e v a l u a t i o n of programs t h a t may be designed f o r t h e i r b e n e f i t . The i n c l u s i o n of a Chinese f a m i l y i n the present study has i n d i c a t e d c u l t u r a l v a r i a t i o n s i n the meaning of mental i l l n e s s and i n terms of the r o l e o f the f a m i l y . Comparative s t u d i e s among e t h n i c groups would enhance our a p p r e c i a t i o n of the importance o f c u l t u r a l background i n g i v i n g meaning to mental i l l n e s s and treatment. T h i s study has i l l u s t r a t e d the importance of under-st a n d i n g the meaning of the p s y c h i a t r i c h o s p i t a l i z a t i o n t o 123 f a m i l i e s . I t i s hoped t h a t f u r t h e r r e s e a r c h i n t h i s area w i l l i n c r e a s e knowledge o f the f a m i l y ' s r e a c t i o n s t o t h i s experience, and thereby h e l p nurses t o more e f f e c -t i v e l y t r e a t the f a m i l y as w e l l as the p a t i e n t . BIBLIOGRAPHY A l b e r t , R o b e r t S. S t a g e s o f breakdown i n t h e r e l a t i o n s h i p and d y n a m i c s between t h e m e n t a l p a t i e n t and h i s f a m i l y . A r c h i v e s o f G e n e r a l P s y c h i a t r y , 1960, 3_, 682-690. A l i v i s a t o s , Gerassmos and L y k e t s o s , G e o r g e . A p r e l i m i n a r y r e p o r t o f a r e s e a r c h c o n c e r n i n g t h e a t t i t u d e o f t h e f a m i l i e s o f h o s p i t a l i z e d m e n t a l p a t i e n t s . I n S t e p h a n P. S p i t z e r and Norman K. D e n z i n ( E d s . ) The M e n t a l  P a t i e n t : S t u d i e s i n t h e S o c i o l o g y o f D e v i a n c e . 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F e e l i n g s o f s t i g m a among r e l a t i v e s o f f o r m e r m e n t a l p a t i e n t s . I n S t e p h a n P. S p i t z e r and Norman K. D e n z e r ( E d s . ) , The m e n t a l  p a t i e n t : s t u d i e s i n t h e s o c i o l o g y o f d e v i a n c e . New Y o r k : McGraw H i l l Co., 1968. G l a s s e r , P a u l and G l a s s e r , L o i s N. F a m i l i e s i n c r i s i s . H a r p e r and Row, P u b l i s h e r s , 1970. 127 Goshman, B a r b a r a . D i f f e r e n c e s i n a t t i t u d e s t o w a r d h o s p i t a l i z a t i o n between p e d i a t r i c s t a f f and p a r e n t s o f h o s p i t a l i z e d c h i l d r e n . C o m m u n i c a t i n g N u r s i n g R e s e a r c h , A p r i l 1977, 9, 51-58. G r a d , J a c q u e l i n e , and S a i n s b u r y , P e t e r . The e f f e c t s t h a t p a t i e n t s h a v e on t h e i r f a m i l i e s i n a community c a r e and a c o n t r o l p s y c h i a t r i c s e r v i c e - a two y e a r f o l l o w - u p . B r i t i s h J o u r n a l o f P s y c h i a t r y , March, 1968, 114, 265-278. G r e e n l e y , James P. The p s y c h i a t r i c p a t i e n t ' s f a m i l y and l e n g t h o f h o s p i t a l i z a t i o n . J o u r n a l o f H e a l t h and  S o c i a l B e h a v i o u r , March 1972, _13 , 25-37. H a l l e r , L i n d a L. F a m i l y s y s t e m s t h e o r y i n p s y c h i a t r i c i n t e r v e n t i o n . A m e r i c a n J o u r n a l o f N u r s i n g , M a r c h 1974, 74 ( 3 ) , 462-463. H a r b i n , H e n r y T. F a m i l i e s and h o s p i t a l s : c o l l u s i o n o r c o o p e r a t i o n ? A m e r i c a n J o u r n a l o f P s y c h i a t r y , December 1978, 135 ( 1 2 ) , 1496-1499. A f a m i l y - o r i e n t e d p s y c h i a t r i c u n i t . F a m i l y P r o c e s s , September 1979, 18 ( 3 ) , 281-291. H a r t o c o l l i s , P e t e r . Our p a t i e n t s ' a n x i o u s r e l a t i v e s . M e n t a l H o s p i t a l s , J une 1965, 16 ( 6 ) , 180-183. H a z z a r d , Mary E l i z a b e t h . An o v e r v i e w o f s y s t e m s t h e o r y . N u r s i n g C l i n i c s o f N o r t h A m e r i c a , 1971, 6 ( 3 ) , 3 8 5 - 3 9 3 . H e r z , M a r v i n I . ; E n d i c o t t , J e a n ; and S p i t z e r , R o b e r t L. B r i e f v e r s u s s t a n d a r d h o s p i t a l i z a t i o n . A m e r i c a n  J o u r n a l o f P s y c h i a t r y , J u l y 1976, 133 ( 7 ) , 7 9 5 - 8 0 1 . H o l l i n g s h e a d , A u g u s t B. Some r e a c t i o n s t o t h e i m p a c t o f i l l n e s s on f a m i l i e s i n a New E n g l a n d c i t y . I n I r v i n g I . K e s s l e r and M o r t o n L. L e v i n ( E d s . ) , T h e community as a e p i d e m i o l o g i c l a b o r a t o r y : a c a s e b o o k  o f community s t u d i e s . B a l t i m o r e : The J o h n s H o p k i n s P r e s s , 1970. J o e l , L u c i l l e , and C o l l i n s , D o r i s I . P s y c h i a t r i c n u r s i n g : t h e o r y and a p p l i c a t i o n . New Y o r k : M c G r a w - H i l l Book Co., 1978. Kalkman, M a r i o n , and D a v i s , Anne. New d i m e n s i o n s i n m e n t a l  h e a l t h - p s y c h i a t r i c n u r s i n g ( 5 t h . e d . ) . San F r a n c i s c o : McGraw- H i l l Book Co., 1980. 128 K l e i n m a n , A r t h u r . C o n c e p t s and a model f o r t h e c o m p a r i s o n o f m e d i c a l s y s t e m s as c u l t u r a l s y s t e m s . S o c i a l  S c i e n c e and M e d i c i n e , A p r i l 1978, 2, 85-93. K r e i s m a n , D o l o r e s , and J o y , V i r g i n i a . F a m i l y r e s p o n s e t o t h e m e n t a l i l l n e s s o f a r e l a t i v e : a r e v i e w o f t h e l i t e r a t u r e . S c h i z o p h r e n i a B u l l e t i n , F a l l 1974, 10, 34-57. L e a v i t t , M a r i b e l l e . The d i s c h a r g e c r i s i s : t h e e x p e r i e n c e o o f f a m i l i e s o f p s y c h i a t r i c p a t i e n t s . N u r s i n g R e s e a r c h J a n . F e b . 1975, 24, 33-40. L e w i s , V e r l , and Z e i c h n e r , Abraham, M. Impact o f a d m i s s i o n t o a m e n t a l h o s p i t a l on a p a t i e n t ' s f a m i l y . M e n t a l  H y g i e n e , 1960, 44, 503-509. L i d z , Ruth and L i d z , T h e o d o r e . The f a m i l y e n v i r o n m e n t o f s c h i z o p h r e n i c p a t i e n t s . A m e r i c a n J o u r n a l o f  P s y c h i a t r y , 1949, 106, 332-345. L i d z , T h e o d o r e , F l e c k , S t e p h e n , and C o r n e l i s o n , A l i c e R. S c h i z o p h r e n i a and t h e f a m i l y . New Y o r k : I n t e r n a t i o n a l U n i v e r s i t i e s P r e s s , 1965. L i l l i s , L . E . and Powers, H e n r y P. P l e a s e s t a y i n t o u c h : c o n t a c t w i t h r e l a t i v e s o f a h o s p i t a l i z e d p a t i e n t . H o s p i t a l and Community P s y c h i a t r y , Dec. 1974, 2_5 ( 1 2 ) , 807-808. Lindemann, C o n s t a n c e . B i r t h c o n t r o l and t h e u n m a r r i e d young woman. New Y o r k : S p r i n g e r P u b l i s h i n g Co., 1974. M a i s e l , R o b e r t D. F a m i l y s e t t i n g s and r e - h o s p i t a l i z a t i o n o f e x - m e n t a l p a t i e n t s . S o c i a l S c i e n c e and M e d i c i n e , 1968, 2, 347-354. Mc C o l l u m , E r i c E. A f a m i l y - o r i e n t e d a d m i s s i o n p r o c e d u r e on an i n p a t i e n t p s y c h i a t r i c u n i t . S o c i a l Work i n H e a l t h  C a r e , Summer 1979, 4 ( 4 ) , 423-431. M i l l s , E n i d . L i v i n g w i t h m e n t a l i l l n e s s . L ondon: R o u t l e d g e and Kegan P a u l , 1962. P a r a d , Howard J . ( E d . ) . C r i s i s i n t e r v e n t i o n : s e l e c t e d r e a d i n g s . New Y o r k : F a m i l y S e r v i c e A s s o c i a t i o n o f A m e r i c a , 1965. P a r k , C l a r a , and S h a p i r o , L e o n M. You a r e n o t a l o n e - " u n d e r s t a n d i n g and d e a l i n g w i t h m e n t a l i l l n e s s . B o s t o n : L i t t l e , Brown and Co., 1976. 129 P o r t e r f i e l d , P a t r i c i a Ann. The meaning o f m e d i c a t i o n - t a k i n g : a q u a l i t a t i v e s t u d y o f t h e m e d i c a t i o n - t a k i n g  o f s c h i z o p h r e n i c c l i e n t s l i v i n g i n t h e community. U n p u b l i s h e d m a s t e r ' s t h e s i s , U n i v e r s i t y o f B r i t i s h C o l u m b i a , 1981. R a b k i n , J u d i t h . P u b l i c a t t i t u d e s t o w a r d m e n t a l i l l n e s s : a r e v i e w o f t h e l i t e r a t u r e . S c h i z o p h r e n i a B u l l e t i n , F a l l 1974, 10, 9-33. R a g u c c i , A n t o i n e t t e . The e t h n o g r a p h i c a p p r o a c h and n u r s i n g r e s e a r c h . N u r s i n g R e s e a r c h , Nov.Dec. 1972, 2_1 ( 6 ) , 485-490. R i s t , Ray C. On t h e means o f kno w i n g : q u a l i t a t i v e r e s e a r c h i n e d u c a t i o n . New Y o r k U n i v e r s i t y E d u c a t i o n Q u a r t e r l y , Summer 1979, 17-21. R o b i n , A.A., Copas, J.B., and Freeman-Browne,D.L. T r e a t -ment s e t t i n g s i n P s y c h i a t r y : l o n g t e r m f a m i l y and s o c i a l f i n d i n g s . B r i t i s h J o u r n a l o f P s y c h i a t r y , 1979, 135, 35-41. Rose, C h a r l e s . R e l a t i v e s ' a t t i t u d e s and m e n t a l h o s p i t a l -i z a t i o n . M e n t a l H y g i e n e , 1959, 43, 194-202. S i l l s , G r a c e M. R e s e a r c h i n t h e f i e l d o f p s y c h i a t r i c n u r s i n g , 1952-1977. N u r s i n g R e s e a r c h , May, June 1977, 26 ( 3 ) , 201-207. S k i p p e r , James K . J r . , F i n k , S t e p h e n L., and H a l l e n b e c k , P h y l l i s N. P h y s i c a l d i s a b i l i t y among m a r r i e d women: p r o b l e m s i n t h e h u s b a n d - w i f e r e l a t i o n s h i p . J o u r n a l o f  R e h a b i l a t i o n , 1968, 34' 16-19. S m i t h , B u r t K., Edans, M a r t h a , Ramsay, M.L., and C o l l i n s , C C . "What do f a m i l i e s a s k ? " M e n t a l H o s p i t a l s , J a n . 1961, pp. 20-21. Smoyak, S h i r l e y . F a m i l y t h e r a p y . I n F l o r e n c e L. Huey (Ed.) P s y c h i a t r i c n u r s i n g 1946 t o 1974: a r e p o r t on t h e s t a t e  o f t h e a r t . New Y o r k : The A m e r i c a n J o u r n a l o f N u r s i n g Co., 1974. S p i t z e r , S t e p h e n , and D e n z i n , Norman. The m e n t a l p a t i e n t :  s t u d i e s i n t h e s o c i o l o g y o f d e v i a n c e . New Y o r k : M c G r a w - H i l l Book Co., 1968. 130 Stember, M a r i l y n L. F a m i l i a l r e s p o n s e t o t h e h o s p i t a l i z a t i o n o f an a d u l t member. Communicating  N u r s i n g R e s e a r c h . I n N u r s i n g R e s e a r c h i n t h e B i c e n t e n n i a l Y e a r ( v o l . 9 ) . C o l o r a d o : W e s t e r n I n t e r s t a t e C o m m i s s i o n f o r H i g h e r E d u c a t i o n . A p r i l 1977, pp. 59-75. S w i n g l e , P a u l G. R e l a t i v e s ' c o n c e p t s o f m e n t a l p a t i e n t s . M e n t a l H y g i e n e , 1965, 49, 461-465. T a n g a r i , A n t h o n y , and C l a s s , L o r e t t a . A d v a n t a g e s o f m u l t i -f a m i l y t h e r a p y f o r f a m i l i e s o f p s y c h i a t r i c i n p a t i e n t s . S o c i a l Work i n H e a l t h C a r e , Summer 1977, 2 ( 4 ) , 399-406. Thompson, R i c h a r d W., and W i l e y , E l i z a b e t h . R e a c h i n g f a m i l i e s o f h o s p i t a l i z e d m e n t a l p a t i e n t s : a g r o u p a p p r o a c h . Community M e n t a l H e a l t h J o u r n a l , 1970, 6 ( 1 ) , 22-23. Von B e r t a l a n f f y , L u d w i g . The meaning o f g e n e r a l s y s t e m s t h e o r y . I n W i l l i a m G r a y , F r e d e r i c k J . D u h l , and N i c h o l a s D. R i z z o ( E d s . ) , G e n e r a l s y s t e m s t h e o r y and  p s y c h i a t r y . B o s t o n : L i t t l e Brown Co., 1969. W i l s o n , H o l l y S. and K n e i s l , C a r o l R. P s y c h i a t r i c n u r s i n g . C a l i f o r n i a : A d d i s o n - W e s l e y Co., 1979. W i l s o n , H o l l y S. L i m i t i n g i n t r u s i o n - s o c i a l c o n t r o l o f o u t s i d e r s i n a h e a l i n g community. N u r s i n g R e s e a r c h , M a r c h , A p r i l 1977, 26 ( 2 ) , 103-111. Z w e r l i n g , I s r a e l , and M e n d e l s o h n , M a r i l y n . I n i t i a l f a m i l y r e a c t i o n s t o day h o s p i t a l i z a t i o n . F a m i l y P r o c e s s , 1965, 4, 50-63. APPENDIX A INFORMATION AND CONSENT FORMS 131 132 P a t i e n t ' s Information and Consent Form My name i s Li n d a Rose. I am a r e g i s t e r e d nurse and am p r e s e n t l y s t u d y i n g f o r a Master's degree a t the U n i v e r s i t y o f B r i t i s h Columbia. I am i n t e r e s t e d i n l e a r n i n g how nurses can h e l p f a m i l i e s l i k e yours with any concerns they might have w h i l e you are i n h o s p i t a l . For t h a t purpose, I would l i k e t o t a l k t o your f a m i l y about any concerns they might have. I would l i k e your p e r m i s s i o n to ask your f a m i l y t o p a r t i c i p a t e . I f you agree, I w i l l meet with them twice w h i l e you are i n h o s p i t a l . I f your f a m i l y i s agreeable, the i n t e r v i e w s w i l l be tape-recorded, but your name or your f a m i l y ' s name w i l l not be used anywhere"on the tapes. The tapes w i l l be kept c o n f i d e n t i a l , and made a v a i l a b l e o n l y t o myself and my t h e s i s a d v i s o r s and the p a r t i c i p a t i n g f a m i l y members. The tapes w i l l be erased a f t e r t h i s has been done and my t h e s i s has been w r i t t e n . No names w i l l be used i n my t h e s i s . A r e f u s a l w i l l have no e f f e c t on the treatment r e c e i v e d by you or your r e l a t i v e s . You are f r e e t o withdraw your consent at any time. There are no f i n a n c i a l b e n e f i t s t o p a r t i c i p a t i n g i n the study, but i s hoped t h a t what I l e a r n from the f a m i l i e s I t a l k t o w i l l h e l p f a m i l i e s i n the f u t u r e . 133 I f you agree, your f a m i l y w i l l r e c e i v e a s i m i l a r i n f o r m a t i o n form asking them t o agree to t a l k to me. I understand the nature of t h i s study and g i v e my consent f o r my f a m i l y t o p a r t i c i p a t e . Date: P a t i e n t ' s S i g n a t u r e : 134 Dear I am a r e g i s t e r e d nurse, and am a l s o a student a t the U n i v e r s i t y o f B r i t i s h Columbia, working on my master's degree i n n u r s i n g . From my experience i n p s y c h i a t r i c n u r s i n g and my read i n g , I have found t h a t nurses know l i t t l e about how f a m i l i e s f e e l when a r e l a t i v e i s h o s p i t a l i z e d i n a p s y c h i a t r i c u n i t . I f e e l i t i s important f o r nurses t o c o n s i d e r the whole f a m i l y and I am i n t e r e s t e d i n l e a r n i n g about how f a m i l i e s f e e l about having a r e l a t i v e i n h o s p i t a l , as w e l l as any other f e e l i n g s t h a t they c o n s i d e r important. I f nurses have t h i s knowledge, i t i s hoped t h a t they w i l l then be ab l e t o work b e t t e r t o meet your needs as w e l l as those o f your r e l a t i v e . I f you would l i k e to h e l p me by t a l k i n g about your experience, and would l i k e f u r t h e r informatiom, p l e a s e s i g n t h i s form and g i v e i t to one o f the s t a f f . T h i s does not mean t h a t you have agreed t o p a r t i c i p a t e , o n l y t h a t you have agreed to being contacted by me by telephone to d i s c u s s the study. Yours t r u l y , L i n d a Rose R e l a t i v e s ' S i g n a t u r e s : Phone" Number: 135 F a m i l i e s ' Information and Consent Form My name i s Linda Rose. I am a r e g i s t e r e d nurse, and am p r e s e n t l y s t u d y i n g f o r a master's degree i n n u r s i n g a t the U n i v e r s i t y o f B r i t i s h Columbia. I am i n t e r e s t e d i n l e a r n i n g about how nurses can h e l p f a m i l i e s who have a r e l a t i v e admitted to a p s y c h i a t r i c h o s p i t a l . L i t t l e i s known about how f a m i l i e s f e e l about t h i s e xperience. T a l k i n g t o you about your r e a c t i o n s t o the h o s p i t a l i z a t i o n o f your r e l a t i v e would h e l p t o i n c r e a s e t h a t knowledge. I f you are w i l l i n g t o h e l p me l e a r n more about the concerns t h a t f a m i l i e s l i k e yours have w h i l e your r e l a t i v e i s i n h o s p i t a l , I would l i k e t o t a l k t o you about i t . I w i l l i n t e r v i e w you twice, i n your home. I f you agree, the i n t e r v i e w s w i l l be tape-recorded. The tapes w i l l be kept c o n f i d e n t i a l , and w i l l be heard o n l y by myself and my t h e s i s a d v i s o r s . A f t e r I have s t u d i e d them to i d e n t i f y concerns and experiences o f the f a m i l i e s , the tapes w i l l be erased. Your names w i l l not be mentioned anywhere on the tapes or i n the r e p o r t . You should o n l y p a r t i c i p a t e i f you would l i k e t o . A r e f u s a l w i l l have no e f f e c t on the treatment r e c e i v e d by you or your r e l a t i v e . You are f r e e to withdraw from the study at any time; you may a l s o r e f u s e t o answer any o f the que s t i o n s d u r i n g the i n t e r v i e w . 136 There are no f i n a n c i a l b e n e f i t s t o you i n p a r t i c i p a t i n g i n t h i s study. Although t h e r e i s no guaranteed b e n e f i t f o r you, i t i s hoped t h a t what we l e a r n w i l l h e l p f a m i l i e s i n the f u t u r e who are i n a s i m i l a r s i t u a t i o n . Some f a m i l i e s may f i n d i t h e l p f u l t o share t h e i r experiences with someone i f they have not had an o p p o r t u n i t y to do so. I f you agree to p a r t i c i p a t e , p l e a s e s i g n t h i s form and I w i l l arrange an i n t e r v i e w time with you. I f you have any f u r t h e r q u e s t i o n s , p l e a s e f e e l f r e e to ask me. I understand the nature of t h i s study and agree t o p a r t i c i p a t e . Date: S i g n a t u r e ( s ) : APPENDIX B INTERVIEW GUIDES 137 138 SAMPLE QUESTIONS FOR INTERVIEWS (adapted from: Harbin (1979), L e a v i t t (1975, Anderson (1977), Kleinman (1978) ) 1. How d i d you r e a c t when (your r e l a t i v e ) was admitted to h o s p i t a l ? 2. What do you t h i n k brought about the h o s p i t a l i z a t i o n ? 3. What treatment do you expect (your r e l a t i v e ) to r e c e i v e ? 4. Do you have any concerns or q u e s t i o n s about the h o s p i t a l i z a t i o n t h a t you would l i k e to t a l k about? 5. How o f t e n have you v i s i t e d (your r e l a t i v e ) ? What d i d you expect from the v i s i t s ? 6. How i n v o l v e d would you l i k e to be i n what i s happening with ( your r e l a t i v e ) ? 7. I f (your r e l a t i v e ) came home on pass, what do you t h i n k would happen? 8. Which areas o f your everyday l i f e have been a f f e c t e d ? (your r e l a t i v e ) - name o f p a t i e n t . 

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