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The meaning of medication-taking : a qualitative study of the medication-taking of schizophrenic clients… Porterfield, Patricia Ann 1981

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THE MEANING OF MEDICATION-TAKING: A QUALITATIVE STUDY OF THE MEDICATION-TAKING OF SCHIZOPHRENIC CLIENTS LIVING IN THE COMMUNITY by PATRICIA ANN PORTERFIELD B.Sc. i n N u r s i n g , U n i v e r s i t y o f A l b e r t a , 1970 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 , 1981 © P a t r i c i a Ann P o r t e r f i e l d , 1981 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 a v a i l a b l e 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. It i s understood that copying or pu b l i c a t i o n of t h i s thesis for f i n a n c i a l gain s h a l l not be allowed without my written permission. Department of Nursing  The University o f . B r i t i s h Columbia 2075 Wesbrook Place Vancouver, Canada V6T 1W5 D^e Ajya/ c27//?8/ np-fi o/7Q) i i ABSTRACT THE MEANING OF MEDICATION-TAKING: A Q u a l i t a t i v e Study of 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 T h i s s t u d y was d e s i g n e d t o i n v e s t i g a t e c l i e n t s ' r a t i o n a l e s f o r t h e i r h e a l t h b e h a v i o r s . S p e c i f i c a l l y , t h e s t u d y p r o b l e m was t o u n d e r s t a n d t h e s u b j e c t i v e meaning o f t h e m e d i c a t i o n - t a k i n g b e h a v i o r o f s c h i z o p h r e n i c c l i e n t s . P r e v i o u s r e s e a r c h on h e a l t h b e h a v i o r s had been p a r t i c u l a r l y con-c e r n e d w i t h c o m p l i a n c e , t h a t i s , " t h e e x t e n t t o w h i c h p a t i e n t b e h a v i o r c o i n c i d e d w i t h m e d i c a l or h e a l t h a d v i c e " (Haynes, T a y l o r , and S a c k e t t 1979). S t u d i e s o f c o m p l i a n c e r a r e l y i n c l u d e d t h e c l i e n t s ' p e r s p e c t i v e s towards t h e i r h e a l t h b e h a v i o r s . T h e r e f o r e t h e purpose o f t h i s s t u d y was t o d e s c r i b e s c h i z o p h r e n i c c l i e n t s ' m e d i c a t i o n - t a k i n g b e h a v i o r s and t h e i r e x p l a n a t i o n s f o r t h o s e b e h a v i o r s w i t h i n t h e c o n t e x t o f ' t h e i r e v e r y d a y l i f e . E l e v e n o u t - p a t i e n t s d i a g n o s e d as s c h i z o p h r e n i c p a r t i c i p a t e d i n the s t u d y , n i n e c l i e n t s t y p i f y i n g a l o n g - t e r m c l i e n t p o p u l a t i o n and two c l i e n t s t y p i f y i n g a s h o r t - t e r m c l i e n t p o p u l a t i o n . A l l p a r t i c i p a n t s were p r e -s c r i b e d o r a l a n t i - p s y c h o t i c m e d i c a t i o n and l i v e d i n community s e t t i n g s i n w h i c h t h e y were r e s p o n s i b l e f o r t h e i r m e d i c a t i o n - t a k i n g . I n t h e c o u r s e o f one o r two i n t e r v i e w s , each p a r t i c i p a n t and the r e s e a r c h e r c o n s t r u c t e d an a c c o u n t o f t h e p a r t i c i p a n t ' s m e d i c a t i o n - t a k i n g . U s i n g c o n t e n t a n a l y s i s , t h i s d a t a was t h e n used t o i d e n t i f y themes and c o n c e p t s r e f l e c t i v e o f the p a r t i c i p a n t s ' p e r s p e c t i v e s towards m e d i c a t i o n - t a k i n g . The p r e s e n t a t i o n o f t h i s d e s c r i p t i v e d a t a was o r g a n i z e d around f i v e m ajor c o n t e n t a r e a s : m e d i c a t i o n - t a k i n g p r a c t i s e s , c u r r e n t p e r s p e c t i v e s towards m e d i c a t i o n - t a k i n g , the c o n t e x t o f m e d i c a t i o n - t a k i n g , t h e m o r a l i m p l i c a t i o n s o f m e d i c a t i o n -t a k i n g , and t h e i n f l u e n c e o f o t h e r s on m e d i c a t i o n - t a k i n g . i i i The p a r t i c i p a n t s ' a c c o u n t s o f t h e i r m e d i c a t i o n - t a k i n g i l l u s t r a t e t h e i m p o r t a n c e o f d e t e r m i n i n g t h e c l i e n t s ' p e r s p e c t i v e s i n o r d e r t o u n d e r s t a n d and work w i t h c l i e n t s and t h e i r h e a l t h b e h a v i o r s . C u r r e n t p r a c t i s e i n h e a l t h c a r e a d v o c a t e s p a t i e n t p a r t i c i p a t i o n i n t h e d e t e r m i n a t i o n and manage-ment of t h e r a p e u t i c regimens such as m e d i c a t i o n - t a k i n g . The r e s e a r c h d a t a was a l s o used i n a n o t h e r way. The p a r t i c i p a n t s ' a c c o u n t s were compared t o r e s e a r c h and l i t e r a t u r e i n t h e f i e l d o f c o m p l i a n c e , s u p p o r t i n g or q u e s t i o n i n g v a r i o u s f a c t o r s supposed r e l e v a n t t o s c h i z o -p h r e n i c c l i e n t s ' m e d i c a t i o n - t a k i n g . I n p r o v i d i n g t h i s a l t e r n a t i v e p e r -s p e c t i v e , the q u a l i t a t i v e d a t a i l l u s t r a t e s t h e way i n w h i c h p r e v i o u s con-c e p t u a l i z a t i o n s o f m e d i c a t i o n - t a k i n g as " c o m p l i a n c e " i n f l u e n c e d how c l i e n t b e h a v i o r was s t u d i e d and hence u n d e r s t o o d . Based on t h e u n d e r s t a n d i n g o f m e d i c a t i o n - t a k i n g d e v e l o p e d i n t h i s s t u d y , i m p l i c a t i o n s f o r h e a l t h c a r e were d i s c u s s e d and s u g g e s t i o n s f o r f u r t h e r r e s e a r c h were made. i v TABLE OF CONTENTS Page A b s t r a c t i i L i s t o f F i g u r e s v i Acknowledgements v i i CHAPTER I : INTRODUCTION 1 I n t r o d u c t i o n t o t h e Pr o b l e m and Purpo s e 1 Statement o f P r o b l e m and Purpo s e 3 D e f i n i t i o n o f Terms 4 I n t r o d u c t i o n t o t h i s S t u dy's M e t h o d o l o g y 5 A. As s u m p t i o n s 6 B. L i m i t a t i o n s . . . . • 6 O r g a n i z a t i o n o f t h i s Study 7 CHAPTER I I : REVIEW OF THE LITERATURE 8 I n t r o d u c t i o n t o Compliance L i t e r a t u r e 8 A. Compliance and t h e P r o c e s s o f H e a l t h C a r e . . . 8 B. Problems i n Com p l i a n c e R e s e a r c h 10 Review o f Compliance L i t e r a t u r e 12 A. S t u d i e s D e t e r m i n i n g R a t e s and F a c t o r s A s s o c i a t e d w i t h C ompliance 13 B. The H e a l t h B e l i e f M odel 17 C. The C l i n i c i a n - P a t i e n t R e l a t i o n s h i p 21 D. The C l i e n t ' s P e r s p e c t i v e 24 E. Combined Approaches t o Co m p l i a n c e 28 F. Summary of t h e Review o f t h e Com p l i a n c e L i t e r a t u r e 29 Drug Therapy i n S c h i z o p h r e n i a 31 A. Purpo s e o f t h i s D i s c u s s i o n 31 B. S c h i z o p h r e n i a : E t i o l o g y , D i a g n o s i s , and P r o g n o s i s 31 C. The E f f i c a c y o f Drug Therapy 33 D. M e d i c a t i o n Regimens 35 E. C o n c l u s i o n 37 CHAPTER I I I : METHODOLOGY 38 I n t r o d u c t i o n 38 S e l e c t i o n o f P a r t i c i p a n t s 38 Da t a C o l l e c t i o n 42 A. The C o n s t r u c t i o n o f an Account 43 B. Management o f the. I n t e r v i e w S i t u a t i o n 47 Da t a A n a l y s i s 49 E t h i c a l C o n s i d e r a t i o n s E n c o u n t e r e d i n t h e R e s e a r c h P r o c e s s 51 Summary 53 V CHAPTER IV: THE PARTICIPANTS*' ACCOUNTS 54 I n t r o d u c t i o n .54 M e d i c a t i o n - t a k i n g P r a c t i s e s 55 A. Ev e r y d a y P r a c t i s e s 55 B. V a r i a t i o n s i n E v e r y d a y P r a c t i s e s 60 C. S a f e t y P r e c a u t i o n s 63 D. P r e s c r i b e d M e d i c a t i o n Changes 64 C u r r e n t P e r s p e c t i v e s Towards M e d i c a t i o n - t a k i n g 65 A. The P a r t i c i p a n t s ' N o t i o n s about M e d i c a t i o n s . . . 65 B. The Reasons Why t h e P a r t i c i p a n t s Need M e d i c a t i o n 69 C. The P a r t i c i p a n t s ' E x p e c t a t i o n s C o n c e r n i n g M e d i c a t i o n T a k i n g 74 The C o n t e x t o f M e d i c a t i o n - t a k i n g 79 A. The I l l n e s s E x p e r i e n c e 79 B. The Treatment E x p e r i e n c e 82 C. The P r o c e s s of D e c i d i n g About M e d i c a t i o n s . . . . 88 The M o r a l I m p l i c a t i o n s 90 The I n f l u e n c e o f O t h e r s on M e d i c a t i o n - t a k i n g 98 A. The F a m i l y ' s I n f l u e n c e 98 B. The T h e r a p i s t - P a t i e n t R e l a t i o n s h i p and M e d i c a t i o n - t a k i n g 99 Summary 106 CHAPTER V DISCUSSION OF THE RESEARCH FINDINGS 108 I n t r o d u c t i o n 108 D i s c u s s i o n o f Compliance L i t e r a t u r e 109 A. S t u d i e s D e t e r m i n i n g R a t e s and F a c t o r s A s s o c i a t e d w i t h C ompliance 110 B. The H e a l t h B e l i e f M odel 115 C. The C l i n i c i a n - P a t i e n t R e l a t i o n s h i p 117 D. The C l i e n t ' s P e r s p e c t i v e 120 E. Combined Approaches t o Compliance 122 D i s c u s s i o n of Drug Therapy i n S c h i z o p h r e n i a 123 Summary 125 CHAPTER V I : SUMMARY AND CONCLUSIONS 127 Summary of t h i s Study 127 I m p l i c a t i o n s f o r H e a l t h Care 128 S u g g e s t i o n s f o r F u r t h e r R e s e a r c h 130 BIBLIOGRAPHY 132 APPENDIX 141 A. I n t r o d u c t o r y L e t t e r 142 B. Consent Form f o r Study . 143 C. Consent Form f o r A u d i o - t a p i n g . 144 D. I n t e r v i e w Guide 145 v i L I ST OF FIGURES Page F i g u r e 1. The Dynamics o f H e a l t h Outcome 9 2. The H e a l t h B e l i e f Model 19 3. Model of Adherence t o Treatment f o r H y p e r t e n s i o n 30 v i i ACKNOWLEDGEMENTS I would l i k e t o e x p r e s s my t h a n k s t o t h e members of my T h e s i s Committee, H e l e n E l f e r t ( C h a i r m a n ) , Joan A n d e r s o n , and Gordon Page, f o r t h e i r c o n s i s t e n t s u p p o r t , c o n f i d e n c e i n my a b i l i t i e s , and w i s e c o u n s e l . I g r e a t l y a p p r e c i a t e t h e c o - o p e r a t i o n g i v e n me by G r e a t e r Vancouver M e n t a l H e a l t h S e r v i c e , p a r t i c u l a r l y Ron L a k e s , D i r e c t o r o f E v a l u a t i o n and R e s e a r c h , and t h e t h e r a p i s t s a t the two Community Care Teams who h e l p e d o b t a i n p a r t i c i p a n t s f o r the s t u d y . I a l s o g r a t e f u l l y acknowledge the c o n t r i b u t i o n o f the s t u d y p a r t i c i p a n t s as t h e i r t i m e and w i l l i n g n e s s t o s h a r e t h e i r l i f e e x p e r i e n c e s made t h i s s t u d y p o s s i b l e . My t h a n k s a r e ex t e n d e d t o the many o t h e r p e r s o n s who c o n t r i b u t e d t h e i r s u p p o r t , i d e a s , and t i m e t o a s s i s t me w i t h t h i s t h e s i s . Two such p e r s o n s d e s e r v e s p e c i a l m e n t i o n : my f r i e n d and c o l l e a g u e , L y n e t t e B e s t , and my husband, D a v i d . CHAPTER I : INTRODUCTION INTRODUCTION TO PROBLEM AND PURPOSE T h i s s t u d y a d d r e s s e s t h e pro b l e m o f p a t i e n t c o m p l i a n c e , u s i n g a q u a l i -t a t i v e a p p roach w h i c h emphasizes u n d e r s t a n d i n g the i n d i v i d u a l ' s p e r s p e c t i v e towards h i s o r h e r own h e a l t h b e h a v i o r . P a t i e n t c o m p l i a n c e , " t h e e x t e n t t o w h i c h a p a t i e n t ' s b e h a v i o r c o i n c i d e s w i t h m e d i c a l o r h e a l t h a d v i c e " (Haynes, T a y l o r , and S a c k e t t 1979, p. 2) i s an i n c r e a s i n g l y i m p o r t a n t i s s u e i n h e a l t h c a r e . P r e v i o u s s t u d i e s have c o n s i d e r e d t h e e x t e n t o f c o m p l i a n c e w i t h s c h e d u l e d a p p o i n t m e n t s , s h o r t -term and l o n g - t e r m m e d i c a t i o n - t a k i n g , d i e t s , e x e r c i s e , c e s s a t i o n o f smoking, s c h e d u l e d d i a g n o s t i c t e s t s , and p r e s c r i p t i o n - f i l l i n g (Haynes, T a y l o r , and S a c k e t t , 1979; B e r k o w i t z e t a l . 1963). Assuming t h a t t h e r a p e u t i c outcome i s r e l a t e d t o t h e s u c c e s s f u l i m p l e m e n t a t i o n o f t h e t h e r a p e u t i c r e g i m e n , t h e s e s t u d i e s , w h i c h have i d e n t i f i e d s u b s t a n t i a l r a t e s o f n o n - c o m p l i a n c e , w a r r a n t a t t e n t i o n from h e a l t h p r o f e s s i o n a l s . A v a r i e t y of r e s e a r c h p e r s p e c t i v e s have been used t o s t u d y c o m p l i a n c e . A l t h o u g h C h a p t e r Two w i l l e x p l o r e r e s e a r c h approaches t o c o m p l i a n c e , t h e f o l l o w i n g o v e r v i e w p r o v i d e s a c o n t e x t f o r t h e approach t a k e n i n t h i s s t u d y . The word " c o m p l i a n c e " i m p l i e s a model o f t h e p a t i e n t - p r a c t i t i o n e r r e l a t i o n s h i p w h i c h emphasizes t h e power and a u t h o r i t y o f t h e p r a c t i t i o n e r and t h e r e s p o n s i b i l i t y o f t h e p a t i e n t t o comply. Comply i s d e f i n e d as " t o conform o r adapt one's a c t i o n s t o a n o t h e r ' s w i s h e s , t o a r u l e , o r t o a necessity',".' and i s synonymous w i t h obey (Webster's, 1976, p. 2 3 1 ) . A d o p t i n g t h i s p e r s p e c t i v e on t h e p a t i e n t - p r a c t i t i o n e r r e l a t i o n s h i p , s t u d i e s have c o n c e p t u a l i z e d n o n - c o m p l i a n c e as d e v i a n c e . That i s , assuming 1 2 adherence t o t h e p r e s c r i b e d p a t t e r n as "normal',! 1 v a r i a t i o n s from t h i s p a t t e r n a r e c o n s i d e r e d ''deviant." R e s e a r c h f o c u s s e d on p a t i e n t c h a r a c t e r i s t i c s w h i c h would a c c o u n t f o r s u c h d e v i a n c e : demographic and p e r s o n a l i t y v a r i a b l e s , h e a l t h b e l i e f s and t h e n a t u r e of t h e p a t i e n t * ' s m e d i c a l p r o b l e m . The c h a r a c t e r i s t i c s of t h e m e d i c a l r e g i m e n were a l s o s t u d i e d , i n d i c a t i n g a r e c o g n i t i o n t h a t non-com-p l i a n c e c o u l d be a t t r i b u t e d t o n o n - p a t i e n t v a r i a b l e s . Ideas c o n c e r n i n g t h e n a t u r e o f t h e p r a c t i t i o n e r - p a t i e n t r e l a t i o n s h i p have changed; a c c o r d i n g l y , some s t u d i e s have f o c u s s e d on c o m p l i a n c e as an i n t e r p e r s o n a l phenomenon. These s t u d i e s r e l a t e d c o m p l i a n c e to a s p e c t s o f t h e p r a c t i t i o n e r - p a t i e n t r e l a t i o n s h i p s u c h as c ommunication p a t t e r n s and t h e p a t i e n t ' s c omprehension of t h e r e g i m e n r e l a t i v e t o t h e amount of h e a l t h t e a c h i n g . The terms adherence, n e g o t i a t i o n , and t h e r a p e u t i c a l l i a n c e have r e p l a c e d " c o m p l i a n c e " i n some of t h e r e c e n t s t u d i e s , r e f l e c t i n g t h e s e changes. I n a d i s c u s s i o n of n u r s i n g and c o m p l i a n c e , Hogue (1979, p. 248) s t a t e s " n u r s e s a r e i n t e r e s t e d i n h e l p i n g p e o p l e p a r t i c i p a t e e f f e c t i v e l y i n p l a n s t o promote h e a l t h , t r e a t d i s e a s e , o r e f f e c t r e h a b i l i t a t i o n ^ ' " p l a c i n g c o m p l i a n c e w i t h i n t h e c o n t e x t o f t h e n u r s e - p a t i e n t r e l a t i o n s h i p . N urses i n many s e t t i n g s assume c o n s i d e r a b l e r e s p o n s i b i l i t y f o r m o n i t o r i n g and p r o -m o t i n g m e d i c a t i o n c o m p l i a n c e . N u r s i n g has tended t o assume l a c k of know-l e d g e of t h e i l l n e s s and t h e p r e s c r i b e d r e g i m e n as a major d e t e r m i n a n t of n o n - c o m p l i a n c e and has a d v o c a t e d p a t i e n t t e a c h i n g . However, th e e f f i c a c y of p a t i e n t t e a c h i n g programs has been q u e s t i o n e d , n e c e s s i t a t i n g t h a t n u r s -i n g e x p l o r e o t h e r approaches to t h i s h e a l t h c a r e p r o b l e m : " T r a n s m i t t i n g i n f o r m a t i o n a l o n e i s n o t enough to overcome n o n - c o m p l i a n c e " (Hogue 1979, p. 2 5 3 ) . 3 The need t o know more about c o m p l i a n c e has been documented i n r e v i e w s of e x i s t i n g l i t e r a t u r e (Haynes, T a y l o r , and S a c k e t t ,1979). B e c k e r and Maiman (1975, p. 11) s t a t e d " i t seems f a i r t o a s s e r t , a f t e r an e x t e n s i v e s u r v e y o f t h e l i t e r a t u r e , t h a t p a t i e n t n o n - c o m p l i a n c e has been t h e b e s t docu-mented, b u t l e a s t u n d e r s t o o d , h e a l t h - r e l a t e d b e h a v i o r . " P a r t i c u l a r l y l a c k -i n g i n c o m p l i a n c e r e s e a r c h a r e s t u d i e s w h i c h emphasize t h e u n d e r s t a n d i n g of c o m p l i a n t and n o n - c o m p l i a n t b e h a v i o r from t h e c l i e n t ' s own frame o f r e f e r e n c e . S t i m s o n (1974, p. 103) s u g g e s t e d t h a t t h e p r o b l e m of c o m p l i a n c e be s t u d i e d from t h e p e r s p e c t i v e o f t h e . p a t i e n t , assuming t h a t " a l m o s t anyone can be a d e f a u l t e r a t some t i m e or a n o t h e r . " T h i s s t u d y i n v e s t i g a t e s t h e phenomenon o f c o m p l i a n c e from t h e p a t i e n t ' s p e r s p e c t i v e , s p e c i f i c a l l y t h e p e r s p e c t i v e o f s c h i z o p h r e n i c o u t - p a t i e n t s . A l a r g e p r o p o r t i o n o f s c h i z o p h r e n i c o u t - p a t i e n t s a r e known to t a k e l e s s a n t i - p s y c h o t i c m e d i c a t i o n t h a n t h e dosage p r e s c r i b e d . Van P u t t e n (1974) has e s t i m a t e d t h i s p r o p o r t i o n t o range from 24-63%, w h i c h can be compared to a p p r o x i m a t e l y 50% f o r l o n g - t e r m m e d i c a t i o n regimens i n g e n e r a l (Haynes, T a y l o r , and S a c k e t t 1979) . As m e d i c a t i o n i s one of t h e major t r e a t m e n t m o d a l i t i e s w i t h t h i s c l i e n t p o p u l a t i o n , and s t u d i e s have documented h i g h e r r e l a p s e r a t e s amongst t h o s e c l i e n t s d i s c o n t i n u i n g m e d i c a t i o n , m e d i c a t i o n c o m p l i a n c e i s of p a r t i c u l a r c o n c e r n . S t u d i e s w i t h s c h i z o p h r e n i c c l i e n t s have i d e n t i f i e d c l i e n t / i l l n e s s c h a r a c t e r i s t i c s w h i c h p r e d i s p o s e to non-c o m p l i a n c e . However, no s t u d i e s have been l o c a t e d i n v e s t i g a t i n g the p e r -s p e c t i v e o f s c h i z o p h r e n i c c l i e n t s towards t h e i r m e d i c a t i o n - t a k i n g . STATEMENT OF PROBLEM AND PURPOSE The g e n e r a l p r o b l e m a d d r e s s e d by t h e s t u d y i s t h e l a c k of knowledge of c l i e n t s ' r a t i o n a l e s f o r h e a l t h b e h a v i o r . More s p e c i f i c a l l y , t h e s t u d y 4 p r o b l e m i s t o u n d e r s t a n d t h e s u b j e c t i v e meaning of t h e m e d i c a t i o n - t a k i n g b e h a v i o r o f s c h i z o p h r e n i c c l i e n t s . S u b j e c t i v e meaning i s d e f i n e d as t h e aim, i n t e n t , s e n s e , and s i g n i f i c a n c e o f t h e m e d i c a t i o n - t a k i n g b e h a v i o r as p e r c e i v e d by t h e c l i e n t . The purpose o f t h i s s t u d y i s t o d e s c r i b e s c h i z o p h r e n i c c l i e n t s ' m e d i c a -t i o n - t a k i n g b e h a v i o r s and t h e i r e x p l a n a t i o n s f o r t h o s e b e h a v i o r s w i t h i n the c o n t e x t o f t h e i r e v e r y d a y l i f e . The d e s c r i p t i v e d a t a o b t a i n e d i n t h i s s t u d y i s used i n two ways: 1) To d i s c u s s t h e e x i s t i n g r e s e a r c h and l i t e r a t u r e c o n c e r n i n g c o m p l i a n c e i n an e x p l a n a t o r y way: t o s u p p o r t o r q u e s t i o n the v a r i o u s p r o -posed f a c t o r s assumed r e l e v a n t t o s c h i z o p h r e n i c c l i e n t s ' m e d i c a t i o n - t a k i n g . 2) To c o n t r i b u t e t o p r a c t i t i o n e r s ' u n d e r s t a n d i n g o f c l i e n t s ' e x p e r i e n c e s and b e l i e f s . C u r r e n t l i t e r a t u r e c o n c e r n i n g m e d i c a t i o n - p r e s c r i b -i n g has emphasized t h e need f o r t h e r a p e u t i c a l l i a n c e s i n w h i c h c l i e n t s p a r t i c i p a t e i n t h e s e l f - r e g u l a t i o n o f t h e i r m e d i c a t i o n . N u r s i n g l i t e r a t u r e s u p p o r t s t h i s a p p r o a c h t o m e d i c a t i o n management. I n o r d e r t o a c h i e v e t r u l y t h e r a p e u t i c a l l i a n c e s , p r a c t i t i o n e r s must u n d e r s t a n d and v a l u e t h e c l i e n t s ' e x p e r i e n c e s and b e l i e f s c o n c e r n i n g t h e i r m e d i c a t i o n . DEFINITION OF TERMS The f o l l o w i n g terms a r e d e f i n e d t o f u r t h e r c l a r i f y t he pr o b l e m and pu r p o s e . U n d e r s t a n d : To have a c l e a r i d e a ; t o g r a s p t h e s i g n i f i c a n c e o r n a t u r e o f s o m e t h i n g . M e d i c a t i o n - t a k i n g b e h a v i o r : The p a t t e r n and amount o f o r a l a n t i -p s y c h o t i c m e d i c a t i o n t a k e n , as r e p o r t e d by t h e c l i e n t . A n t i - p s y c h o t i c m e d i c a t i o n s a r e s p e c i f i e d as p h e n o t h i a z i n e s , b u t y r o p h e n o n e s j thioxanthenes', d i h y d r . o - i n d o l o n e s , and d i b e n z o x a z e p i n e s . 5 Schizophrenic c l i e n t : A c l i e n t of Greater Vancouver Mental Health Service, diagnosed as schizophrenic, who i s between the ages 20-59 years, resides i n the community, and i s respon-s i b l e for taking his/her own medications. Explanations: C l i e n t s ' descriptions of reasons, causes, or motives of t h e i r actions, i n t h i s case, t h e i r medication-taking behavior. Context of everyday l i f e : The c l i e n t ' s d a i l y l i v i n g , including routines, events, and re l a t i o n s h i p s with others,, i n r e l a t i o n to medication-taking. INTRODUCTION TO THIS STUDY'S METHODOLOGY Quantitative and q u a l i t a t i v e research not only involve d i f f e r e n t research methods, but r e f l e c t "views about the s o c i a l world which are ph i l o s o p h i c a l l y , i d e o l o g i c a l l y , and e p i s t e m i o l o g i c a l l y d i s t i n c t " (Rist. 1979, p. 17). Quantitative research i s based on the p o s i t i v i s t i c or nat-u r a l i s t i c approach: that s o c i a l r e a l i t y can be represented by definable and q u a n t i f i a b l e s o c i a l f a c t s , which are independent of the experience of any p a r t i c u l a r i n d i v i d u a l . Research data i s seen as independent of the researcher, s t r e s s i n g the o b j e c t i v i t y and r e l i a b i l i t y of the study design (Rist 1979; Davis 1978). The t h e o r e t i c a l framework selected for the quantitative research d i r e c t s the ordering of the observed phenomenon. Qu a l i t a t i v e research i s based on the phenomenological approach: that s o c i a l r e a l i t y i s known sub j e c t i v e l y , by understanding how those i n -volved i n t e r p r e t and give meaning to the s i t u a t i o n . Research i s seen as a s o c i a l enterprise, r e q u i r i n g r e f l e x i v i t y on the part of the researcher. Questions about the research methods and procedures become an i n t e g r a l part of i t s s t r u c t u r a l content. The researcher enters the research s i t u a -t i o n with a minimal number of structured expectations (Davis 1978; Diers-1979; R i s t 1979). In q u a l i t a t i v e research, the usual notions of representative sampling 6 and r e l i a b i l i t y and v a l i d i t y o f i n s t r u m e n t s and d a t a do n o t a p p l y . R e s e a r c h p a r t i c i p a n t s a r e s e l e c t e d i n o r d e r t o answer t h e r e s e a r c h q u e s t i o n s t h a t a r e posed (Lindemann 1974). The c r i t e r i a f o r j u d g i n g t h e adequacy of the r e s e a r c h i s t h e r i c h n e s s of t h e d a t a and t h e c r e d i b i l i t y o f t h e c o n c e p t s and t h e o r y p r e s e n t e d ( D a v i s 1978; D i e r s 1 9 7 9 ) . These d i f f e r i n g r e s e a r c h p e r s p e c t i v e s g i v e r i s e t o d i f f e r e n t assump-t i o n s and l i m i t a t i o n s . The f o l l o w i n g a s s u m p t i o n s and l i m i t a t i o n s have been i d e n t i f i e d f o r t h i s s t u d y . A. A s s u m p t i o n s I t i s assumed t h a t t h e s e c l i e n t s can speak f o r t h e m s e l v e s . P s y c h i a t r i c c l i e n t s , p a r t i c u l a r l y t h o s e w i t h p s y c h o t i c i l l n e s s e x p e r i e n c e s , a r e o f t e n d i s q u a l i f i e d as l e g i t i m a t e l y s p e a k i n g f o r t h e m s e l v e s . A l t h o u g h the s t u d y p r o p o s e s t o u n d e r s t a n d t h e s u b j e c t i v e meaning of t h e c l i e n t s ' e x p e r i e n c e s (hence any s u b j e c t i v e e x p e r i e n c e c o u l d be assumed s u f f i c i e n t ) , t h e v a l i d i t y o f t h e s t u d y f i n d i n g s assumes t h a t t h e c l i e n t s c o n s t r u c t r e a s o n a b l e a c c o u n t s of t h e i r m e d i c a t i o n - t a k i n g . As t h e s t u d y p a r t i c i p a n t s l i v e i n community s e t t i n g s where t h e y a r e r e s p o n s i b l e f o r m e d i c a t i o n - t a k i n g , as w e l l as o t h e r e v e r y d a y a c t i v i t i e s , t h e y a r e assumed t o be making r e a s o n e d c h o i c e s i n r e g a r d s t o m e d i c a t i o n - t a k i n g . B. L i m i t a t i o n s 1. The s a m p l i n g p r o c e s s was bound by t i m e , r a t h e r t h a n t h e s a m p l i n g p r i n c i p l e of r i c h n e s s of d a t a . 2. The p a r t i c i p a n t s ' f a i l u r e t o r e p o r t f r e e l y l i m i t s t h e degree to w h i c h t h e s t u d y a c h i e v e s i t s p u r p o s e . As p a r t i c i p a n t s may have been ex-posed t o c o n s i d e r a b l e p e r s u a s i o n t o t a k e m e d i c a t i o n , and as t h e r e s e a r c h e r made c o n t a c t w i t h t h e p a r t i c i p a n t s v i a t h e agency, p a r t i c i p a n t s may have 7 been guarded i n t h e i r a c c o u n t s o f m e d i c a t i o n - t a k i n g . The degree t o w h i c h p a r t i c i p a n t s f e l t f r e e t o e x p r e s s t h e i r p a t t e r n s and e x p l a n a t i o n s o f m e d i -c a t i o n - t a k i n g i s d i s c u s s e d i n C h a p t e r T h r e e . ORGANIZATION OF THIS STUDY T h i s s t u d y i s o r g a n i z e d i n t h e f o l l o w i n g manner. Chap t e r Two p r e s e n t s a r e v i e w o f t h e l i t e r a t u r e , w h i c h p r o v i d e s a c o n c e p t u a l background f o r a d d r e s s i n g t h e problem. C h a p t e r Three d e s c r i b e s methodology, i n c l u d i n g a d i s c u s s i o n o f t h e p r o c e s s o f c o n s t r u c t i n g a c c o u n t s . C h a p t e r Four p r e s e n t s t h e d a t a g a t h e r e d ; t h e s c h i z o p h r e n i c c l i e n t s ' a c c o u n t s o f t h e i r m e d i c a t i o n -t a k i n g and t h e i r e x p l a n a t i o n s f o r t h i s b e h a v i o r . C h a p t e r F i v e i s a d i s -c u s s i o n o f t h e c o m p l i a n c e l i t e r a t u r e r e v i e w e d i n Chap t e r Two v i s a v i s the r e s e a r c h d a t a p r e s e n t e d i n Chap t e r F o u r . C h a p t e r S i x c o n t a i n s a summary of t h e s t u d y . 8 CHAPTER I I : REVIEW OF THE LITERATURE Ch a p t e r I I p r o v i d e s a c o n c e p t u a l background f o r t h e development of t h e s t u d y ' s p r o b l e m and p u r p o s e , d i f f e r e n t i a t i n g t h e r e s e a r c h p e r s p e c t i v e adopted by t h i s s t u d y from p r e v i o u s r e s e a r c h . As t h e p r o b l e m and purpose of t h i s s t u d y e v o l v e d from t h e r e s e a r c h e r ' s r e v i e w o f c o m p l i a n c e , a r e v i e w of t h e l i t e r a t u r e on c o m p l i a n c e i s t h e major f o c u s o f t h i s c h a p t e r . There w i l l a l s o be a d i s c u s s i o n o f dru g t h e r a p y used w i t h c l i e n t s d i a g n o s e d as s c h i z o -p h r e n i c . INTRODUCTION TO COMPLIANCE LITERATURE A. Compliance and the P r o c e s s o f H e a l t h Care I n s e e k i n g t o u n d e r s t a n d c o m p l i a n c e , i t i s u s e f u l t o l o c a t e c o m p l i a n c e r e s e a r c h w i t h i n the r e a l m o f h e a l t h c a r e r e s e a r c h . S t a r f i e l d ' s (1973) model emphasizes c o m p l i a n c e r e s e a r c h as c o n c e r n e d w i t h t h e p r o c e s s of h e a l t h c a r e , o c c a s i o n a l l y l i n k i n g p r o c e s s / c o m p l i a n c e and outcome ( F i g u r e 1, p. 9 ) . The S t a r f i e l d (1973) model i l l u s t r a t e s two i m p o r t a n t c o n s i d e r a t i o n s r e g a r d i n g t h e c h o i c e o f c o m p l i a n c e as t h e o r g a n i z i n g framework f o r t h i s l i t e r a t u r e r e v i e w . F i r s t l y , t h i s model r e f l e c t s a p r a c t i t i o n e r - r e s e a r c h e r ' s p e r s p e c t i v e o f i m p o r t a n t c o n c e p t s i n h e a l t h c a r e . T h i s model does n o t r e p r e s e n t a p a t i e n t ' s c o n s t r u c t i o n o f h e a l t h c a r e ; t h e p a t i e n t ' s p o i n t o f v i e w o f t h e i m p o r t a n t p r o c e s s c o n c e p t s and t h e d e s i r e d outcome might be e n t i r e l y d i f f e r e n t . As emphasized by t h e many who s u p p o r t " h u m a n i z a t i o n " and "consumerism" i n h e a l t h c a r e , t h e p e r s p e c t i v e s o f p a t i e n t s and p r a c -t i t i o n e r s do d i f f e r . The word c o m p l i a n c e p o r t r a y s b o t h t h e power and t h e p e r s p e c t i v e o f t h e h e a l t h c a r e system; t h e newer term, t h e r a p e u t i c a l l i -a nce, i m p l i e s s h a r e d power. 9 Figure 1: The Dynamics of Health Outcome (Starfield 1973, p. 134) STRUCTURE PROCESS' PROVISION OF CARE RECEIPT OF CARE OUTCOME Personnel F a c i l i t i e s Equipment Organization Information Systems < Financing Problem Recognition Diagnosis Management i Reassessment i T PATIENTS U t i l i z a t i o n Acceptance Understanding Compliance Longevity A c t i v i t y S a t i s f a c t i o n Disease P o t e n t i a l R e s i l i e n c e SOCIAL AND PHYSICAL ENVIRONMENT Secondly, this model also clearly indicates that compliance is only one relevant concept within health care process research. Other process concepts, including some not portrayed in the model, are also relevant to conceptualizing patient health behaviors such as medication-taking. The choice of compliance as the organizing centre for the literature review is related to the purpose of this study. Although compliance has been 10 u s e d , o t h e r h e a l t h c a r e p r o c e s s c o n c e p t s , s u c h as s e l f - c a r e , may p r o v e to be more germane to t h e u n d e r s t a n d i n g of m e d i c a t i o n - t a k i n g . B. Problems i n Compliance R e s e a r c h I n o r d e r t o more f u l l y a p p r e c i a t e t h e c o m p l e x i t i e s and l i m i t a t i o n s of c o m p l i a n c e r e s e a r c h , problems a s s o c i a t e d w i t h c o m p l i a n c e r e s e a r c h w i l l now be d i s c u s s e d . F i r s t l y , as c l i e n t p o p u l a t i o n samples have g e n e r a l l y been drawn from h e a l t h c a r e f a c i l i t i e s , t h o s e p a t i e n t s l a b e l l e d n o n - c o m p l i a n t have been t h o s e a t t e n d i n g t h e f a c i l i t y . The group o f -'• n o n - c o m p l i e r s " who have chosen to drop out of t h e h e a l t h c a r e s y s t e m a r e r a r e l y i n c l u d e d i n s t u d i e s . Thus, th e s t u d i e s a r e e x a m i n i n g o n l y one v a r i a t i o n o f n o n - c o m p l i a n c e . F o r t h i s r e a s o n , l o n g i t u d i n a l s t u d i e s have been p r o p o s e d , f o l l o w i n g c l i e n t s from f i r s t c o n t a c t w i t h an agency (Haynes, T a y l o r , and S a c k e t t 1 9 7 9 ) . S e c o n d l y , t h e r e . i s t h e q u e s t i o n of g e n e r a l i z a t i o n s amongst d i s e a s e e n t i t i e s and h e a l t h b e h a v i o r s . I s t h e r e an o v e r - a l l phenomenon c o m p l i a n c e o r i s i t o n l y m e a n i n g f u l t o l o o k a t s p e c i f i c s i t u a t i o n s ? I t i s n o t known t o what e x t e n t c o m p l i a n c e i s i n f l u e n c e d by t h e s p e c i f i c d i s e a s e and i l l n e s s . P s y c h i a t r i c i l l n e s s e s a r e a s s o c i a t e d w i t h h i g h e r r a t e s of n o n - c o m p l i a n c e . Other i l l n e s s e s have s i m i l a r r a t e s of non-c o m p l i a n c e , however, whether t h e r e a s o n s f o r t h e s e r a t e s a r e s i m i l a r i s n o t known. T h i s l a c k of knowledge has l e d t o recommendations t h a t r e s e a r c h f o c u s on p a r t i c u l a r d i s e a s e c a t e g o r i e s ( S a c k e t t and Haynes 1976). S i m i l a r l y , n o n - c o m p l i a n c e as a c o n s i s t e n t b e h a v i o r p a t t e r n has shown v a r i e d r e s u l t s . S t u d i e s of v a r i o u s h e a l t h b e h a v i o r s ( B e r k o w i t z e t a l . 1963; M a r s t o n 1970) i n d i c a t e i n d i v i d u a l s have d i f f e r i n g c o m p l i a n c e r a t e s among t h e s e h e a l t h b e h a v i o r s . F o r example, one cannot assume t h e degree 11 t o w h i c h a p e r s o n a t t e n d s a c l i n i c i s t h e same degree w i t h w h i c h t h e p e r s o n w i l l t a k e m e d i c a t i o n . However, W i l l c o x , G i l l a n , and Hare (1965) r e p o r t e d c o n s i s t e n c y i n n o n - c o m p l i a n c e w i t h one b e h a v i o r , m e d i c a t i o n - t a k i n g , based on s e v e r a l u r i n e t e s t s o ver an a p p a r e n t t w o - t h r e e month t i m e p e r i o d . The g e n e r a l consensus on t h i s i s s u e i s t h a t t h e r e i s no d i s t i n c t d e f a u l t e r f o r whom no n - c o m p l i a n c e can be p r e d i c t e d f o r a l l h e a l t h b e h a v i o r s ( B l a c k w e l l 1 973a). T h i r d l y , d i f f e r e n t d e f i n i t i o n s o f c o m p l i a n c e and n o n - c o m p l i a n c e , as w e l l as d i f f e r e n t methods o f measurement, l i m i t t h e co m p a r i s o n s and summar-i z a t i o n s t o be made. How a r e c o m p l i a n c e and n o n - c o m p l i a n c e o p e r a t i o n a l i z e d ? F o r example, does one d e f i n e c o m p l i a n c e as a b e h a v i o r o r an a t t i t u d e (Davis,- 1968)? Some s t u d i e s ( W i l l c o x , G i l l a n , and Hare 1965; Mason, F o r r e s t , F o r r e s t , and B u t l e r 1963) w i t h s c h i z o p h r e n i c p a t i e n t s have used F o r r e s t u r i n e t e s t s t o d e t e r m i n e c o m p l i a n c e . P a t i e n t s were c a t e g o r i z e d as c o m p l i a n t or n o n - c o m p l i a n t based on some l e v e l o f m e d i c a t i o n i n t h e u r i n e . U s i n g t h e s e u r i n e l e v e l s , t h e s e r e s e a r c h e r s c o n c l u d e d t h a t p a t i e n t s were n o n - c o m p l i a n t , r e g a r d l e s s of what t h e p a t i e n t s ' i n t e n t i o n s were: t h a t i s , d e l i b e r a t e l y n o t t a k i n g t h e d r u g , a t t e m p t s a t s e l f - r e g u l a t i o n , f o r g e t t i n g , o r even t a k i n g as p r e s c r i b e d w i t h t e s t i n g e r r o r s a c c o u n t i n g f o r t h e d i s -c r e p a n c y . M ichaux's s t u d y (1961) o f p s y c h i a t r i c o u t p a t i e n t s c l a s s i f i e d p a t i e n t s a c c o r d i n g t o b o t h r e s i s t a n c e ( a t t i t u d e ) and d e v i a t i o n from p r e s c r i b e d dosage ( b e h a v i o r ) i n o r d e r t o a c c o u n t f o r t h e a t t i t u d i n a l and b e h a v i o r a l a s p e c t s o f c o m p l i a n c e . S e l f - r e p o r t measures a r e g e n e r a l l y s t a t e d t o be l e s s a c c u r a t e t h a n o b j e c t i v e measures s u c h as u r i n e t e s t s o r p i l l c o u n t s . However, t h e d e f a u l t r a t e f o r M i c h a u x ' s s t u d y , based on s e l f - r e p o r t , was 52%, and c o n s i s t e n t w i t h t h e o t h e r o u t - p a t i e n t r a t e s u s i n g o b j e c t i v e measures. 12 F i n a l l y , i f c o m p l i a n c e i s c o n s i d e r e d o n l y i n terms o f d e t e r m i n i n g a c c u r a t e r a t e s , a b e h a v i o r a l d e f i n i t i o n would s u f f i c e . However, as t h e s e s t u d i e s have approached c o m p l i a n c e as something d e s i r a b l e , p a t i e n t a t t i t u d e and comprehension w o u l d appear t o be an i m p o r t a n t a s p e c t i n u n d e r s t a n d i n g and i n t e r v e n i n g i n t h i s p r o c e s s . F o r c o m p l i a n c e r e s e a r c h i n g e n e r a l , B l a c k w e l l ' s comment i s r e l e v a n t and c o n g r u e n t w i t h t h e purpose o f t h i s s t u d y : "An o b v i o u s s h o r t - c o m i n g o f many s t u d i e s on d r u g d e v i a t i o n i s t h a t they have used o b j e c t i v e i n d i c e s w i t h o u t q u e s t i o n i n g t h e p a t i e n t " (1972, p. 8 4 6 ) . E a r l i e r s t u d i e s a r e o f l i m i t e d u s e f u l n e s s because t h e y d i d n o t a d d r e s s t h e l i n k a g e s between t h e f a c t o r s a s s o c i a t e d w i t h c o m p l i a n c e , a t t i -t u d e s , knowledge, and b e h a v i o r s . The s t u d i e s w h i c h w i l l be r e p o r t e d i n t h i s l i t e r a t u r e r e v i e w s h o u l d be c o n s i d e r e d i n v i e w o f t h e s e i s s u e s c o n c e r n i n g c o m p l i a n c e r e s e a r c h . REVIEW OF COMPLIANCE LITERATURE H a v i n g made t h e s e i n t r o d u c t o r y r e m a r k s , t h e l i t e r a t u r e on c o m p l i a n c e w i l l now be v i e w e d . D e l i b e r a t e l y e x c l u d e d from t h i s r e v i e w i s r e s e a r c h c o n c e r n e d s p e c i f i c a l l y w i t h c o m p l i a n c e amongst t h e e l d e r l y and c o n s i d e r a -t i o n o f t h e r a p e u t i c i n t e r v e n t i o n s f o r i m p r o v i n g c o m p l i a n c e . The de t e r m i - r n a n t s o f c o m p l i a n c e and n o n - c o m p l i a n c e , p a r t i c u l a r l y m e d i c a t i o n - t a k i n g i n s c h i z o p h r e n i a , a r e t h e c o n c e r n o f t h i s r e v i e w . V a r i o u s t h e o r e t i c a l p e r -s p e c t i v e s towards human b e h a v i o r w i l l be r e f l e c t e d i n t h e f o l l o w i n g a pproaches towards c o m p l i a n c e . T h i s l i t e r a t u r e r e v i e w on c o m p l i a n c e i s grouped i n t o t h e f o l l o w i n g c a t e g o r i e s : a) s t u d i e s d e t e r m i n i n g r a t e s and f a c t o r s a s s o c i a t e d w i t h c o m p l i a n c e , b) t h e H e a l t h B e l i e f M o d e l , c) the c l i n i c i a n - p a t i e n t r e l a t i o n -s h i p , d) t h e c l i e n t ' s p e r s p e c t i v e , and e) combined approaches t o c o m p l i a n c e . 13 A. S t u d i e s D e t e r m i n i n g R a t e s and F a c t o r s A s s o c i a t e d w i t h C ompliance T h i s l a r g e group of s t u d i e s t y p i c a l l y f o c u s s e s on i d e n t i f y i n g the r a t e s and f a c t o r s a s s o c i a t e d w i t h c o m p l i a n c e and n o n - c o m p l i a n c e . These f a c t o r s o f t e n t a k e t h e form o f c o r r e l a t i o n s , hence p r e d i c t o r s o f non-com-p l i a n c e , and v a r i a b l e s t o be m a n i p u l a t e d t o improve c o m p l i a n c e , r a t h e r t h a n t h e form o f e x p l a n a t i o n s o f c o m p l i a n c e and n o n - c o m p l i a n c e . A v a r i e t y o f h e a l t h - r e l a t e d b e h a v i o r s and p a t i e n t d i a g n o s t i c c a t e g o r i e s have been s t u d i e d . M e d i c a t i o n - t a k i n g f o r c h r o n i c d i s e a s e s i n c l u d i n g t u b e r c u l o s i s , s c h i z o p h r e n i a , anemia, r h e u m a t o i d a r t h r i t i s , and more r e c e n t l y h y p e r -t e n s i o n , has r e c e i v e d c o n s i d e r a b l e a t t e n t i o n ( B l a c k w e l l 1972; Haynes, T a y l o r , and Sackett, 1 9 7 9 ) . There a r e numerous d i f f i c u l t i e s w i t h t h e c o m p a r i s o n and s u m m a r i z a t i o n o f t h e s e s t u d i e s , r e l a t e d t o t h e problems of c o m p l i a n c e r e s e a r c h p r e v i o u s l y d i s c u s s e d . R e v i e w e r s have commented on t h e c o n f u s i n g and c o n t r a d i c t o r y d a t a ( S a c k e t t and Haynes 1976; M a r s t o n 1970; G i l l u m and B a r s k y 1974; B l a c k w e l l 1 9 7 3 a ) . R e g a r d l e s s o f t h e s e d i f f i c u l t i e s , t h e s e r e v i e w e r s have t y p i c a l l y made t h e f o l l o w i n g g e n e r a l i z a t i o n s , w h i c h a r e s u p p o r t e d by the a u t h o r ' s s u r v e y of t h e s t u d i e s i n c l u d e d i n t h i s c a t e g o r y . 1) R a t e s of C o m p l i a n c e : M a r s t o n (1970) r e p o r t e d t h e w i d e s t v a r i a t i o n o f n o n - c o m p l i a n c e r a t e s , from 4-100%. Haynes, T a y l o r , and S a c k e t t (1979) a v e r a g e d t h e r a t e s of c o m p l i a n c e w i t h d i f f e r e n t l o n g - t e r m m e d i c a t i o n regimens f o r d i f f e r e n t i l l n e s s e s t o be about 50%. 2) P a t i e n t C h a r a c t e r i s t i c s : "Demographic v a r i a b l e s s u c h as age, se x , s o c i o - e c o n o m i c s t a t u s , e d u c a t i o n , r e l i g i o n , m a r i t a l s t a t u s , and r a c e , when examined a p a r t f r o m o t h e r v a r i a b l e s have r a r e l y been p r e d i c t i v e of c o m p l i a n c e w i t h m e d i c a l recommendations" ( M a r s t o n 1970, p. 3 1 7 ) . T h i s s t a t e m e n t was g e n e r a l l y a g r e e d upon by o t h e r r e v i e w e r s , w i t h a q u a l i f i e r 14 c o n c e r n i n g extremes of age: t h e young and o l d have h i g h e r n o n - c o m p l i a n c e r a t e s ( B l a c k w e l l 1973a). The p e r s o n a l i t y c h a r a c t e r i s t i c s of n o n - c o m p l i e r s was one of t h e most c o n t r a d i c t o r y a r e a s w i t h i n t h i s r e s e a r c h . A l t h o u g h some s t u d i e s have i d e n t i f i e d t r a i t s o f n o n - c o m p l i e r s , such as h o s t i l i t y and a g g r e s s i o n ( B l a c k w e l l 1972), t h e r e s e a r c h f o c u s has now s h i f t e d from i d e n t i f y i n g the p a t i e n t ' s i n d i v i d u a l t r a i t s t o e x a m i n i n g t h e p a t i e n t - p h y s i c i a n i n t e r -a c t i o n , w h i c h w i l l be a s e p a r a t e t o p i c i n t h i s r e v i e w . The p a t i e n t ' s l i v i n g s i t u a t i o n has been c o r r e l a t e d w i t h c o m p l i a n c e — l i v i n g a l o n e , p o v e r t y , unemployment, and f a m i l y i n s t a b i l i t y and d i s -harmony c o n t r i b u t e d t o n o n - c o m p l i a n c e ( B l a c k w e l l 1973b) . C o n v e r s e l y , f a m i l y s t a b i l i t y and s u p p o r t promoted c o m p l i a n c e ( S a c k e t t and Haynes 1976). 3) F e a t u r e s o f t h e I l l n e s s : C h r o n i c i l l n e s s , e s p e c i a l l y when t r e a t -ment i s p r o l o n g e d , p r o p h y l a c t i c , o r s u p p r e s s i v e i n n a t u r e , and when t h e consequences of s t o p p i n g t h e r a p y may be d e l a y e d , was a s s o c i a t e d w i t h h i g h e r n o n - c o m p l i a n c e r a t e s ( B l a c k v j e l l 1973a) . As w e l l , p s y c h i a t r i c d i a g n o s e s , i n c l u d i n g s c h i z o p h r e n i a , were r e l a t e d t o h i g h e r n o n - c o m p l i a n c e r a t e s (Haynes, T a y l o r , and S a c k e t t , 1979; B l a c k w e l l 1973a). 4) The Regimen: A l l r e v i e w s were i n agreement t h a t c o m p l e x i t y of r e g i m e n was a f a c t o r a s s o c i a t e d w i t h n o n - c o m p l i a n c e : the o v e r - a l l amount of change r e q u i r e d by t h e i n d i v i d u a l , and t h e number o f d i f f e r e n t m e d i -c a t i o n s . F r e q u e n c y o f dose was assumed a f a c t o r b u t t h i s has been ques-t i o n e d ( B l a c k w e l l 1 9 7 9 ) . S i d e e f f e c t s , commonly f e l t t o be i m p o r t a n t , were c i t e d by B l a c k w e l l (1973a) and M a r s t o n ( 1 9 7 0 ) , but d i s a g r e e m e n t w i t h the e f f e c t o f s i d e e f f e c t s has been e x p r e s s e d by Haynes, T a y l o r , and S a c k e t t (1979) . Compliance d e c r e a s e d w i t h t i m e on t h e r e g i m e n . 5) The H e a l t h Care S e t t i n g : The s e t t i n g , or " s t r u c t u r a l " f a c t o r s , 15 as t h e y w o u l d be termed i n t h e S t a r f i e l d (1973) d i a g r a m (see p. 9) i n -c l u d e f a c t o r s s u c h as t h e f r e q u e n c y o f a p p o i n t m e n t s , w a i t i n g t i m e , and c o s t s . E x t ended s u p e r v i s i o n was s a i d t o i n c r e a s e c o m p l i a n c e ( B l a c k w e l l 1979); a c c o r d i n g l y i n p a t i e n t s had h i g h e r r a t e s of c o m p l i a n c e t h a n o u t -p a t i e n t s . Whereas t h e f o r m e r g e n e r a l i z a t i o n s have been made based on g e n e r a l c o m p l i a n c e r e s e a r c h , t h o s e s t u d i e s c o n c e r n e d w i t h m e d i c a t i o n - t a k i n g i n s c h i z o p h r e n i c c l i e n t p o p u l a t i o n s w i l l now be examined. S t u d i e s of i n p a t i e n t s c h i z o p h r e n i c s have a s s o c i a t e d n o n - c o m p l i a n c e w i t h s u c h f a c t o r s as p a r a n o i d symptoms ( W i l s o n and Enoch 1967), c l o s e d ward v e r s u s open ward ( R i c h a r d s 1 964), and l e s s f a v o r a b l e a t t i t u d e s towards m e d i c a t i o n , home, p a r e n t s , and a u t h o r i t y ( R i c h a r d s 1 9 6 4 ) . Three s t u d i e s were co n d u c t e d u s i n g p s y c h i a t r i c p a t i e n t s w i t h v a r y i n g d i a g n o s e s and m e d i c a t i o n s , i n c l u d i n g a n t i - p s y c h o t i c d rugs ( W i l l c o x , G i l l a n , and Hare 1965; M c C l e l l a n , and Cowan 1970; M ichaux 1961). W i l l c o x e t a l . s t a t e d t h a t "our f i n d i n g s do l i t t l e t o e l u c i d a t e t h e r e a s o n s why p a t i e n t s o mit t h e i r d r u g s " (1965, p. 7 9 2 ) . Age, s e x , i n t e l l i g e n c e , and s i d e e f f e c t s were no t s e e n as i n f l u e n t i a l , b u t l i v i n g a l o n e was. C o n t r a r y t o t h i s , M i c haux (1961) n o t e d p o s i t i v e c o r r e l a t i o n s between r e s i s t a n t a t t i t u d e towards m e d i c a t i o n , dosage d e v i a t i o n , and s i d e e f f e c t s o f t h e m e d i c a t i o n . M c C l e l l a n and Cowan c o n c l u d e d "a s u b s t a n t i a l number of p a t i e n t s a p p a r e n t l y a d j u s t dosage t o t h e i r own s e l f - i d e n t i f i e d needs and t h a t t h i s i s i n t h e d i r e c t i o n o f s c a l i n g t h e dosage downward... i t i s o f some consequence t h a t s u c h l a r g e numbers o f p a t i e n t s do n o t f e e l f r e e t o i n f o r m t h e i r t h e r a p i s t s o f t h i s change" (1970, p. 1 7 7 3 ) . Johnson and Freeman (1973) s t u d i e d a s c h i z o p h r e n i c o u t - p a t i e n t popu-l a t i o n r e c e i v i n g l o n g - a c t i n g i n j e c t a b l e p h e n o t h i a z i n e s . They d e t e r m i n e d 16 t h e i r n o n - c o m p l i a n c e r a t e of 18% was b e t t e r t h a n t h e a v e r a g e f o r t h a t pop-u l a t i o n . "The r e a s o n s f o r p a t i e n t s r e f u s i n g f u r t h e r i n j e c t i o n s were d i f f i -c u l t t o i s o l a t e , b u t i n c l u d e d v o l i t i o n a l d e f e c t s o r o t h e r r e s i d u a l symptoms of t h e i l l n e s s , f a i l u r e t o a p p r e c i a t e o r a c c e p t t h e need f o r c o n t i n u e d med-i c a t i o n , r e a l o r i m a g i n e d s i d e e f f e c t s , and s o c i a l i n c o n v e n i e n c e s " (Johnson and Freeman 1973, p. 1 1 7 ) . Serban and Thomas (1974) s t u d i e d m e d i c a t i o n - t a k i n g as p a r t of a s t u d y about t h e a t t i t u d e s and b e h a v i o r s of 125 a c u t e and 516 c h r o n i c s c h i z o -p h r e n i c p a t i e n t s r e g a r d i n g a m b u l a t o r y t r e a t m e n t , u s i n g a p o p u l a t i o n of h o s p i t a l i z e d p a t i e n t s . A l t h o u g h 60% o f t h e a c u t e and 67.8% of t h e c h r o n i c p a t i e n t s s t a t e d t h a t t h e y b e l i e v e d r e g u l a r use of m e d i c a t i o n would be h e l p f u l , o n l y 32% of t h e a c u t e and 29.3% of t h e c h r o n i c p a t i e n t s s t a t e d t h e y had t a k e n i t . The s t u d y s t a t e d : " f u r t h e r q u e s t i o n i n g i n o r d e r t o d e t e r m i n e i f t h e a t t i t u d e was due t o f a i l u r e t o u n d e r s t a n d t h e i m p o r t a n c e o f m e d i c a t i o n r e v e a l e d t h a t b o t h a c u t e and c h r o n i c p a t i e n t s would d i s c o n -t i n u e m e d i c a t i o n i f : t h e y f e l t t h e y no l o n g e r needed i t , t a k i n g m e d i c a t i o n i n t e r f e r e d w i t h t h e i r a c t i v i t i e s , t a k i n g m e d i c a t i o n made them f e e l d i f f e r e n t from o t h e r s , and t h e y f e l t no d i f f e r e n c e i n t h e i r c o n d i t i o n a f t e r f o r -g e t t i n g t o t a k e m e d i c a t i o n " ( S e r b a n and Thomas 1974, p. 9 9 2 ) . About 28% o f the p a t i e n t s i n b o t h groups f e l t r e m i n d e r s would be of use to them and a n o t h e r 20% s t a t e d t h e y w o u l d d e f i n i t e l y n o t t a k e m e d i c a t i o n s . F i n a l l y , t h e work o f Van P u t t e n (1974; 1978; Van P u t t e n , Crumpton and Y a l e 1976) w i l l be m e n t i o n e d . U s i n g b o t h community and h o s p i t a l -b ased c l i e n t s , Van P u t t e n has been s t u d y i n g t h e drug c o m p l i a n c e of s c h i z o -p h r e n i c p a t i e n t s , e m p h a s i z i n g t h e need f o r w o r k i n g a l l i a n c e s . Van P u t t e n (1974) r e l a t e d n o n - c o m p l i a n c e t o e x t r a p y r a m i d a l symptoms of t h e d r u g s , p a r t i c u l a r l y a k a t h i s i a . A f u r t h e r s t u d y on " h a r d - c o r e d r u g r e f u s e r s " i n 17 w h i c h p a t i e n t s i n d i c a t e d t h a t symptoms of d e p r e s s i o n and a n x i e t y on t h e p a r t o f d r u g t a k e r s v e r s u s g r a n d i o s i t y on t h e p a r t o f drug n o n - t a k e r s were t h e b e s t p r e d i c t o r s (Van P u t t e n e t a l . 1 9 7 6 ) . I n summary, t h e g e n e r a l s t u d i e s o f c o m p l i a n c e d e s c r i b e d r a t e s and c o r r e l a t i o n s o f f a c t o r s a s s o c i a t e d w i t h c o m p l i a n c e b u t n o t e x p l a n a t i o n s as to how and why t h o s e f a c t o r s were a s s o c i a t e d w i t h c o m p l i a n c e . I n a d d i t i o n t o c o r r e l a t i o n s , t h e l i t e r a t u r e on s c h i z o p h r e n i c p a t i e n t s ' c o m p l i a n c e w i t h m e d i c a t i o n p r o v i d e d some n o t i o n s as t o why s c h i z o p h r e n i c p a t i e n t s do or do not t a k e m e d i c a t i o n . However, as t h e s e e x p l a n a t i o n s were n o t g e n e r a l l y t h e p r i n c i p a l f o c u s o f t h e s e s t u d i e s , we do not know t h e r e s e a r c h methods by w h i c h t h e s e e x p l a n a t i o n s were o b t a i n e d , whether i t be d a t a f r o m p a t i e n t s o r t h e r e s e a r c h e r s ' i n f e r e n c e s . B. The H e a l t h B e l i e f Model R e c o g n i z i n g t h e i m p o r t a n c e o f p a t i e n t s ^ p e r s p e c t i v e s , s e v e r a l s o c i o -p s y c h o l o g i c a l models w h i c h i n c o r p o r a t e t h e i n d i v i d u a l ' s p e r c e p t i o n s have been d e v e l o p e d t o p r e d i c t h e a l t h b e h a v i o r s (Suchman ( 1967; Horn 1976; J e n k i n s 1979) . The most w i d e l y known and e x t e n s i v e l y t e s t e d i s t h e H e a l t h B e l i e f M o d e l . P r o p o s e d by R o s e n s t o c k ( 1 9 6 6 ) , t h e model was d e s c r i b e d a s : "The v a r i a b l e s i n t h e model d e a l w i t h t h e s u b j e c t i v e w o r l d o f the i n d i -v i d u a l . . . t h e f o c u s i n t h e a p p l i c a t i o n of t h e model i s t o l i n k c u r r e n t sub-j e c t i v e s t a t e s o f t h e i n d i v i d u a l w i t h c u r r e n t h e a l t h b e h a v i o r " ( R o s e n s t o c k 1966, p. 9 8 ) . The model was p r i m a r i l y based on t h e work of L e w i n , a l t h o u g h o t h e r s o c i a l - p s y c h o l o g i c a l t h e o r i e s , g e n e r a l l y termed v a l u e - e x p e c t a n c y t h e o r i e s , can be c o r r e l a t e d w i t h t h e model (Maiman and B e c k e r 1 9 7 4 ) . Two c l a s s e s o f v a r i a b l e s a c c o u n t f o r t h e i n d i v i d u a l ' s m o t i v a t i o n : the p s y c h o l o g i c a l s t a t e o f r e a d i n e s s t o t a k e a c t i o n , w h i c h i s based on the 18 I n d i v i d u a l ' s p e r c e i v e d s u s c e p t i b i l i t y t o and p e r c e i v e d s e r i o u s n e s s of t h e h e a l t h t h r e a t ; and t h e e x t e n t to w h i c h a p a r t i c u l a r c o u r s e of a c t i o n i s b e l i e v e d t o r e d u c e t h e t h r e a t , t h a t i s , t h e p e r c e i v e d b e n e f i t s o f t a k i n g a c t i o n and b a r r i e r s t o t a k i n g a c t i o n . The model a l s o i n c o r p o r a t e s cues to a c t i o n , w h i c h a r e t r i g g e r s f o r t h e a p p r o p r i a t e a c t i o n . The model assumes t h e t h e o r e t i c a l r e l a t i o n s h i p t h a t a t t i t u d e s d e t e r m i n e b e h a v i o r and i t has been c r i t i c i z e d by t h o s e u n a b l e t o a c c e p t t h a t a s s u m p t i o n . The model was o r i g i n a l l y d e v e l o p e d t o a c c o u n t f o r p r e v e n t i v e h e a l t h b e h a v i o r s , b u t i t has been a p p l i e d more w i d e l y , u s i n g t h e c o n c e p t s h e a l t h b e h a v i o r , i l l n e s s b e h a v i o r , and s i c k - r o l e b e h a v i o r ( K a s l and Cobb 1966). B r i e f l y , h e a l t h b e h a v i o r e q u ates t o p r e v e n t i v e a c t i o n s , i n t h e absence of symptoms; i l l n e s s b e h a v i o r e q u ates t o a c t i o n s t a k e n by an i n d i v i d u a l t o d e f i n e and remedy a p e r c e i v e d i l l n e s s ; and t h i r d l y , s i c k - r o l e b e h a v i o r e q u a t e s t o a c t i v i t i e s u n d e r t a k e n t o g e t w e l l ( K a s l and Cobb 1966) . Com-p l i a n c e b e h a v i o r s a r e c o n s i d e r e d as s i c k - r o l e b e h a v i o r s . B e c k e r has done t h e most e x t e n s i v e t e s t i n g o f t h e model i n p r e d i c t i n g c o m p l i a n c e b e h a v i o r ( B e c k e r , Drachman, and K i r s c h t 1972a and 1972b; B e c k e r and Maiman 1975) . The H e a l t h B e l i e f M o d e l , as r e f o r m u l a t e d by B e c k e r and a s s o c i a t e s f o r p r e d i c t i n g and e x p l a i n i n g s i c k - r o l e b e h a v i o r s , i s p r e s e n t e d on t h e f o l l o w i n g page ( F i g u r e 2 ) . I n a s t u d y c o n d u c t e d i n a p e d i a t r i c s e t t i n g ( B e c k e r , Drachman, and K i r s c h t 1972a), c o m p l i a n c e was examined as a p r o c e s s i n v o l v i n g l e a r n i n g ( t h e name o f t h e m e d i c a t i o n , t h e number of t i m e s a day i t i s t o be g i v e n , and t h e d a t e o f t h e f o l l o w - u p a p pointment) and subsequent b e h a v i o r ( a d m i n i s t e r i n g t h e m e d i c a t i o n and k e e p i n g t h e f o l l o w - u p a p p o i n t m e n t ) . The m o t i v a t i o n s , v a l u e of t h r e a t r e d u c t i o n , and p r o b a b i l i t y o f a c t i o n r e d u c i n g t h e t h r e a t were t e s t e d by means of a q u e s t i o n n a i r e f o r q u a n t i t a t i v e a n a l y s i s , and t h e n c o r r e l a t e d READINESS TO UNDERTAKE RECOMMENDED SICK ROLE BEHAVIOR Motivations Concern about ( s a l i e n c e o f ) h e a l t h m a t t e r s i n g e n e r a l W i l l i n g n e s s t o seek and a c c e p t m e d i c a l d i r e c t i o n I n t e n t i o n t o comply P o s i t i v e h e a l t h a c t i v i t i e s Value of Illness Threat Reduction S u b j e c t i v e e s t i m a t e s o f : S u s c e p t i b i l i t y o r r e s u s c e p t i b i l i t y ( i n c l . b e l i e f i n d i a g n o s i s ) V u l n e r a b i l i t y t o i l l n e s s i n g e n e r a l * E x t e n t o f p o s s i b l e b o d i l y harm E x t e n t o f p o s s i b l e i n t e r f e r e n c e w i t h s o c i a l r o l e s * P r e s e n c e o f ( o r p a s t e x p e r i e n c e w i t h ) symptoms Probability that Compliant Behavior Will Reduce the Threat S u b j e c t i v e e s t i m a t e s o f : The p r o p o s e d regimen's s a f e t y The p r o p o s e d r e g i m e n ' s e f f i c a c y ( i n c l . " f a i t h i n d o c t o r s and m e d i c a l c a r e " and "chance o f r e c o v e r y " ) MODIFYING AND ENABLING FACTORS SICK ROLE •BEHAVIORS Demographic ( v e r y young or o l d ) Structural ( c o s t , d u r a t i o n , com-p l e x i t y , s i d e e f f e c t s , a c c e s s i -b i l i t y o f regimen; need f o r new p a t t e r n s o f b e h a v i o r ) Attitudes ( s a t i s f a c t i o n w i t h v i s i t , p h y s i c i a n , o t h e r s t a f f , c l i n i c p r o c e d u r e s and f a c i l i t i e s ) Interaction ( l e n g t h , d e p t h , c o n t i n -u i t y , m u t u a l i t y o f e x p e c t a t i o n , q u a l i t y , and typ e of d o c t o r - p a t i e n t r e l a t i o n s h i p ; p h y s i c i a n agreement w i t h p a t i e n t ; feedback t o p a t i e n t ) Enabling ( p r i o r e x p e r i e n c e w i t h a c t i o n , i l l n e s s o r regimen; s o u r c e o f a d v i c e and r e f e r r a l Likelihood of: Compliance w i t h p r e -s c r i b e d regimens : ( e . g . , d r u g s , d i e t , e x e r c i s e , p e r s o n a l and work h a b i t s , f o l l o w - u p t e s t s , r e f e r r a l s and f o l l o w up a p p o i n t m e n t s , e n t e r i n g o r c o n t i n u -i n g a t r e a t m e n t p r o -gram) At motivating, but not inhibiting, levels. vb F i g u r e 2: The H e a l t h B e l i e f Model (B e c k e r 1974, p. 416) 20 w i t h t h e c o m p l i a n t b e h a v i o r s . The a u t h o r s c o n c l u d e d t h e model appeared u s e -f u l a l t h o u g h n o t a l l c a t e g o r i e s c o r r e l a t e d s i g n i f i c a n t l y w i t h e i t h e r t h e knowledge o r b e h a v i o r a l a s p e c t s of c o m p l i a n c e . A l t h o u g h t h i s model has n o t been implemented i n i n v e s t i g a t i o n s of c o m p l i a n c e w i t h p s y c h i a t r i c c l i e n t s , a s i m i l a r p e r s p e c t i v e i s d e m o n s t r a t e d by a s t u d y r e l a t i n g i n s i g h t and adherence t o m e d i c a t i o n i n c h r o n i c s c h i z o -p h r e n i c s ( L i n , S p i g a , and F o r t s c h 1979) . I n s i g h t was d e f i n e d as a r e c o g -n i t i o n o f t h e e x i s t e n c e of problems and t h e need f o r m e d i c a l i n t e r v e n t i o n . Those p a t i e n t s who had i n s i g h t , p e r c e i v e d b e n e f i t s from m e d i c a t i o n , and a l s o p e r c e i v e d a r e l a t i o n s h i p between t h e two were more l i k e l y t o t a k e med-i c a t i o n t h a n t h o s e who d i d n o t have i n s i g h t n o r p e r c e i v e d b e n e f i t s . However, t h i s c o m b i n a t i o n f a i l e d t o be a s t a t i s t i c a l l y s i g n i f i c a n t f a c t o r i n d i s -c r i m i n a t i n g a d h e r i n g f r o m n o n - a d h e r i n g p a t i e n t s . A s i m i l a r a p p r o a c h was a dopted by N e l s o n e t a l . (1975) who f o u n d t h a t t h e " a c c e p t a n c e o f t h e p r e m i s e t h a t t h e y were p s y c h i a t r i c a l l y d i s t u r b e d , were a n x i o u s about t h e i r symptoms and were m o t i v a t e d t o r e s o l v e t h e i r p e r s o n a l sense o f d i s t u r b a n c e " were p o s i t i v e l y c o r r e l a t e d t o c o m p l i a n c e ( p . 1 2 3 7 ) . As m e n t i o n e d p r e v i o u s l y , t h e H e a l t h B e l i e f M odel has u t i l i z e d t h e c o n c e p t " s i c k - r o l e " b e h a v i o r i n r e f e r e n c e t o c o m p l i a n c e . S i c k - r o l e has been q u e s t i o n e d as a r e l e v a n t c o n c e p t f o r c h r o n i c i l l n e s s e s s u c h as s c h i z o -p h r e n i a . K a s l ( 1 9 7 4 ) , r e v i e w i n g t h e H e a l t h B e l i e f Model and c h r o n i c i l l -n e s s e s , f e l t t h a t m o d i f i c a t i o n s were n e c e s s a r y f o r c h r o n i c i l l n e s s e s . M o d i f i c a t i o n s a r e needed t o a c c o u n t f o r : t h e p e r s o n ' s " a t - r i s k " s t a t u s , d e s p i t e f e e l i n g w e l l ; c o m p l y i n g w i t h t r e a t m e n t d e s p i t e no change i n h e a l t h s t a t u s and an i n d e f i n i t e t r e a t m e n t p e r i o d ; and t h e n o n - m e d i c a l , t h a t i s , l i f e - s t y l i n g w h i c h may be p r e s c r i b e d . The n o t i o n t h a t t h e " s i c k - r o l e " may n o t r e f l e c t t h e s o c i a l r o l e s i t u a t i o n of t h e c h r o n i c p a t i e n t was s u p p o r t e d 21 by a s t u d y o f c o m p l i a n c e among glaucoma p a t i e n t s u s i n g eye d r o p s ( V i n c e n t 1971) . The f o r m u l a t i o n o f an " a t - r i s k " r o l e m i g h t p r o v e u s e f u l i n c h r o n i c i l l n e s s . As w e l l , K a s l (1974) s u g g e s t s t h e H e a l t h B e l i e f M odel needs t o i n c o r p o r a t e t h e c o n c e p t s o f l a y r e f e r r a l s ystems; s o c i a l s u p p o r t ; the i n -f l u e n c e o f t h e d o c t o r - p a t i e n t r e l a t i o n s h i p ; and s o c i o c u l t u r a l l y d e t e r m i n e d e x p e c t a t i o n s and p e r c e p t i o n s o f p a i n and symptoms, h e a l t h and i l l n e s s , and t h e s i c k - r o l e . I n summary, t h e H e a l t h B e l i e f M o d e l , a model e m p h a s i z i n g p a t i e n t s ' s u b j e c t i v e p e r c e p t i o n s , has been used i n a l i m i t e d way i n p r e d i c t i n g com-p l i a n c e . Some see i t as p r o m i s i n g (Haynes, T a y l o r , and S a c k e t t 1 9 7 9 ) , however, n u r s i n g s t u d i e s (Hogue 1979) u s i n g t h e model have n o t p r o v e n i t s u s e f u l n e s s i n p r e d i c t i n g h e a l t h b e h a v i o r . M o d i f i c a t i o n s have been s u g g e s t e d t o i n c r e a s e i t s u s e f u l n e s s i n c o n c e p t u a l i z i n g r e l e v a n t v a r i a b l e s f o r c h r o n i c i l l n e s s . C. The C l i n i c i a n - P a t i e n t R e l a t i o n s h i p B o t h t h e s t u d i e s o f f a c t o r s i n f l u e n c i n g c o m p l i a n c e and the H e a l t h B e l i e f Model p l a c e p r i m a r y emphasis on t h e p a t i e n t i n the s t u d y o f non-c o m p l i a n c e . A d i f f e r e n t p e r s p e c t i v e on t h e d e t e r m i n a n t s i s o f f e r e d by s t u d i e s f o c u s s i n g on t h e c l i n i c i a n - p a t i e n t r e l a t i o n s h i p ( p r e d o m i n a n t l y s t u d i e s of t h e d o c t o r - p a t i e n t r e l a t i o n s h i p ) . D a v i s s t u d i e d t h e s t r u c t u r e and p r o c e s s o f t h e d o c t o r - p a t i e n t i n t e r -a c t i o n , u s i n g B a l e s ' p r o b l e m - s o l v i n g o r i e n t a t i o n as t h e t h e o r e t i c a l formu-l a t i o n f o r t h e s t u d y ( D a v i s 1 9 7 1 ) . >Bales' o r i e n t a t i o n assumes t h a t b o t h d o c t o r s and p a t i e n t s have i n t e r n a l i z e d c o n c e p t i o n s o f t h e i n s t i t u t i o n a l i z e d p a t t e r n s of b e h a v i o r a p p r o p r i a t e f o r t h e d o c t o r - p a t i e n t i n t e r a c t i o n . S u c c e s s f u l p r o b l e m - s o l v i n g w i l l c o n s i s t o f b o t h t a s k b e h a v i o r s ( A d a p t i v e -22 I n s t r u m e n t a l b e h a v i o r s ) and s o c i a l - e m o t i o n a l b e h a v i o r s ( I n t e g r a t i v e -E x p r e s s i v e b e h a v i o r s ) p e r f o r m e d i n t h e s e i n s t i t u t i o n a l i z e d ways. T a p e - r e c o r d e d d o c t o r - p a t i e n t i n t e r a c t i o n s were coded i n t o t h e c a t e -g o r i e s f o r I n t e r a c t i o n P r o c e s s A n a l y s i s . D a v i s c o n c l u d e d t h a t 37% o f t h e p a t i e n t s were n o n - c o m p l i a n t ; p e r s o n a l and s o c i a l a t t r i b u t e s of t h e p a t i e n t s were u n r e l a t e d t o t h e c o m p l i a n c e . "Non-compliant b e h a v i o r was e x p l a i n e d by i n c r e a s e d d i f f i c u l t y of c o m m unication and a t t e m p t s by d o c t o r s and p a t i e n t s t o c o n t r o l each o t h e r " ( D a v i s 1968, p. 2 7 9 ) . K o r s c h and a s s o c i a t e s ( K o r s c h , G o z z i , and V i d a 1968; F r a n c i s , K o r s c h , and M o r r i s 1969; V i d a , K o r s c h , and M o r r i s 1969; Freemon, N e g r e t e , D a v i s , and K o r s c h 1971) s t u d i e d t h e d o c t o r - p a t i e n t r e l a t i o n s h i p i n a p e d i a t r i c s e t t i n g , f o c u s s i n g on t h e v e r b a l i n t e r a c t i o n between t h e mothers and doc-t o r s . The d o c t o r - m o t h e r i n t e r a c t i o n was r e l a t e d t o p a t i e n t s a t i s f a c t i o n and p a t i e n t c o m p l i a n c e , b o t h measured v i a an i n t e r v i e w w i t h t h e mother. The i n t e r a c t i o n s were a n a l y z e d i n s e v e r a l ways: a c c o r d i n g t o d e s c r i p t i o n s of t h e i n t e r v i e w s by t h e mother, by i d e n t i f y i n g i n s t a n c e s o f " d o c t o r b l o c k a g e s " ( c o m m u n i c a t i o n b l o c k s i d e n t i f i e d by l i s t e n i n g t o taped i n t e r -v i e w s ) , and a l s o a d o p t i n g D a v i s ' a p p r o a c h , t h e B a l e s ' I n t e r a c t i o n P r o c e s s A n a l y s i s . "Outcome o f t h e m e d i c a l c o m m u n i c a t i o n s , i n terms of t h e p a t i e n t ' s s a t i s f a c t i o n and f o l l o w t h r o u g h on m e d i c a l a d v i c e , was f a v o r a b l y i n f l u e n c e d by h a v i n g a p h y s i c i a n who was f r i e n d l y ; e x p r e s s e d s o l i d a r i t y w i t h t h e mother; to o k some time t o d i s c u s s n o n - m e d i c a l , s o c i a l s u b j e c t s and showed an i n t e r e s t i n h e r ; and gave he r t h e i m p r e s s i o n of o f f e r i n g i n f o r m a t i o n f r e e l y , w i t h o u t h e r h a v i n g to r e q u e s t i t , o r f e e l i n g e x c e s s i v e l y q u e s t i o n e d by him" (Freemon, N e g r e t e , D a v i s , and K o r s c h 1971, p. 3 1 0 ) . P a t i e n t s a t i s f a c t i o n and c o m p l i a n c e were h i g h l y c o r r e l a t e d , a l t h o u g h not synonymous. F a c t o r s o t h e r t h a n t h e d o c t o r - p a t i e n t r e l a t i o n s h i p i n f l u e n c i n g c o m p l i a n c e 23 were t h o u g h t t o be t h e s e r i o u s n e s s o f t h e i l l n e s s as p e r c e i v e d by t h e mother, t h e c o m p l e x i t y of t h e i n s t r u c t i o n s , and p r a c t i c a l c i r c u m s t a n c e s ( F r a n c i s , K o r s c h , and M o r r i s 1 9 6 9 ) . S v a r s t a d (1977) sought a m e a n i n g f u l c o n c e p t u a l model f o r s t u d y i n g p h y s i c i a n - p a t i e n t communications and p a t i e n t c o n f o r m i t y , b e l i e v i n g B a l e s ' framework t o be i n a d e q u a t e . The s t u d y q u e s t i o n was "Why do p h y s i c i a n s sometimes f a i l t o a c h i e v e t h e p a t i e n t s ' c o n f o r m i t y w i t h m e d i c a t i o n a d v i c e ? " ( S v a r s t a d 1977 , p. 223),. Two major d i m e n s i o n s of p h y s i c i a n c o m m unication were i d e n t i f i e d : t h e p h y s i c i a n ' s e f f o r t t o i n s t r u c t t h e p a t i e n t and t h e p h y s i c i a n ' s e f f o r t t o m o t i v a t e t h e p a t i e n t . The p h y s i c i a n ' s e f f o r t to m o t i v a t e was e v a l u a t e d i n terms of i n f l u e n c e p r o c e s s e s such as f r i e n d l i n e s s , j u s t i f i c a t i o n , a u t h o r i t y , and emphasis. P a t i e n t c o n f o r m i t y ( c o m p l i a n c e ) was p o s i t i v e l y a s s o c i a t e d w i t h t h e p h y s i c i a n e f f o r t t o m o t i v a t e and t h e amount o f p h y s i c i a n i n s t r u c t i o n . H u l k a e t a l . (1975) a l s o s t u d i e d the p a t i e n t ' s c omprehension o f t h e m e d i c a t i o n r e g i m e , assuming t h a t c o m p l i a n t b e h a v i o r can o n l y o c c u r as a r e s u l t o f a p p r o p r i a t e c o m m unication from t h e d o c t o r . There has been c o n s i d e r a b l e emphasis on t h e c l i n i c i a n ' s i n s t r u c -t i o n a l b e h a v i o r and t h e c o r r e s p o n d i n g r e s u l t , p a t i e n t c o m p r e h e n s i o n , i n r e l a t i o n t o c o m p l i a n c e . T h e i r p e r c e i v e d i m p o r t a n c e has c o n t r i b u t e d t o t h e development of p a t i e n t e d u c a t i o n programs. S t u d i e s of t h e p h y s i c i a n - p a t i e n t r e l a t i o n s h i p and i t s e f f e c t on med-i c a t i o n - t a k i n g have r a r e l y been done i n p s y c h i a t r y , e s p e c i a l l y w i t h t h e l o n g - t e r m m e d i c a t i o n - t a k i n g of s c h i z o p h r e n i c c l i e n t s , a l t h o u g h t h e l i t e r a t u r e s u p p o r t s t h e n o t i o n of t h e i m p o r t a n c e o f a c o - o p e r a t i v e r e l a t i o n s h i p . "The most n e g l e c t e d v a r i a b l e i n the l i t e r a t u r e on p s y c h i a t r i c adherence has been t h e c l i n i c i a n - p a t i e n t i n t e r a c t i o n " ( E i s e n t h a l e t a l . 1979, p. 3 9 4 ) . A s t u d y by E i s e n t h a l e t a l . ( 1 9 7 9 ) , u s i n g i n t a k e i n t e r v i e w s c o n d u c t e d a t a 24 p s y c h i a t r i c " w a l k - i n " c l i n i c w i t h b o t h p h y s i c i a n and n o n - p h y s i c i a n s t a f f , d e m o n s t r a t e d t h a t a n e g o t i a t e d a p p r o a c h r e s u l t e d i n g r e a t e r adherence to t h e d i s p o s i t i o n p l a n . The n e g o t i a t e d a p proach assumes t h a t p a t i e n t s have d i s t i n c t p e r spec t i v e s _ r e g a r d i n g t h e i r problems and r e g a r d i n g t r e a t m e n t . E f f e c t i v e p l a n n i n g r e q u i r e s t h e c l i n i c i a n t o " s t r i v e t o u n d e r s t a n d t h e p a t i e n t ' s p e r s p e c t i v e , r e c o g n i z e the l e g i t i m a c y o f c o n f l i c t s when th e y o c c u r , and n e g o t i a t e t h e i r r e s o l u t i o n " ( E i s e n t h a l e t a l . 1979, p. 3 9 4 ) . Some of t h e work i n r e g a r d s t o m e d i c a t i o n - t a k i n g and t h e d o c t o r - p a t i e n t r e l a t i o n s h i p has been done under t h e r u b r i c o f " n o n - s p e c i f i c f a c t o r s i n d r u g t h e r a p y , " a l t h o u g h t h i s r e s e a r c h a r e a tends t o f o c u s more on v a r i a b l e s i n -f l u e n c i n g d r u g e f f e c t t h a n on c o m p l i a n c e . I n s u m m a r i z i n g t h e work w h i c h has been p r e s e n t e d on t h e c l i n i c i a n -p a t i e n t r e l a t i o n s h i p , d i f f e r e n t a s p e c t s of t h i s r e l a t i o n s h i p a r e emphasized i n each s t u d y . These a s p e c t s i n c l u d e : r o l e e x p e c t a t i o n s and r o l e f u l f i l l -ment i n t h e management o f t h e p r o b l e m - s o l v i n g i n t e r a c t i o n , the p h y s i c i a n ' s a b i l i t y t o communicate i n a p e r s o n a l i z e d way w i t h p a t i e n t s , t h e p h y s i c i a n ' s i n s t r u c t i o n a l and m o t i v a t i o n a l e f f o r t , and t h e c l i n i c i a n ' s a b i l i t y to nego-t i a t e a t r e a t m e n t p l a n s u i t a b l e t o the c l i e n t . D. The C l i e n t ' s P e r s p e c t i v e The n e x t p e r s p e c t i v e on c o m p l i a n c e t o be d i s c u s s e d i s s i m i l a r to t h e p e r s p e c t i v e o f t h i s s t u d y . C l i e n t s o r p a t i e n t s a r e seen as a c t i v e l y d e f i n i n g t h e i r s i t u a t i o n , e x e r c i s i n g judgment i n d e c i s i o n s i n t h e i r l i v e s , and d e a l i n g w i t h a v a r i e t y of competing demands i n t h e i r e v eryday l i v e s . I n t h e c o u r s e of t h e s e a c t i v i t i e s , n o n - c o m p l i a n c e i s s e e n as e x p e c t e d i n some c i r c u m s t a n c e s . T h i s g e n e r a l p e r s p e c t i v e can be c o n t r a s t e d w i t h t h e p e r s p e c t i v e w h i c h v i e w e d t h e " n o r m a l " p a t i e n t as a p a s s i v e and o b e d i e n t 25 s u b j e c t , a c c e p t i n g t h e a u t h o r i t y o f t h e h e a l t h c a r e system t o p r e s c r i b e h i s / h e r b e h a v i o r s . There a r e s e v e r a l v a r i a t i o n s of t h i s g e n e r a l p e r s p e c t i v e . S t u d i e s under t h e r u b r i c o f " s e l f - c a r e " a r e examples o f t h i s p e r s p e c -t i v e . A c k n o w l e d g i n g t h a t what can be d e f i n e d as h e a l t h b e h a v i o r can be v e r y b r o a d o r v e r y narrow, t h e s e s t u d i e s seek t o u n d e r s t a n d t h e ways i n w h i c h p e o p l e do c a r e f o r t h e m s e l v e s , i n d i v i d u a l l y and as f a m i l i e s (Roghmann, H e c h t , and Haggert 1973; L e v i n , K a t z , and H o i s t 1 9 7 6 ) . S e l f -c a r e i s d e p i c t e d as a s o c i a l p r o c e s s , w i t h f a m i l y , f r i e n d s , and t h e h e a l t h c a r e system i n f l u e n c i n g t h e i n d i v i d u a l , sometimes i n competing ways ( B a r o f s k y 1978; P r a t t 1 9 7 3 ) . S e l f - m e d i c a t i o n i s r e c o g n i z e d as a l o n g -s t a n d i n g and common a c t i v i t y w i t h i n our c u l t u r e , as w e l l as o t h e r c u l t u r e s (Leake 1965) . P e o p l e make judgments i n d e p e n d e n t o f p h y s i c i a n s i n r e g a r d t o b o t h p r e s c r i p t i o n and n o n - p r e s c r i p t i o n drugs ( D u n n e l l and C a r t w r i g h t 1972; Knapp and Knapp 1972) . R a t h e r t h a n s e e k i n g c o m p l i a n c e , w h i c h i s s u g g e s t i v e o f c o e r c i o n o r c o n f o r m i t y , B a r o f s k y s u g g e s t s t h e g o a l of h e a l t h c a r e s h o u l d be t o enhance s e l f - c a r e , based upon n e g o t i a t i o n between t h e i n d i v i d u a l and the h e a l t h c a r e p r o v i d e r ( B a r o f s k y 1978) . A l t h o u g h t h e n e x t group o f s t u d i e s has h o t been grouped w i t h s e l f -c a r e , t h e y c o u l d e a s i l y be subsumed w i t h i n t h a t a p p r o a c h . These s t u d i e s seek t o u n d e r s t a n d t h e p a t i e n t ' s r e s p o n s e t o an i l l n e s s , d e p i c t i n g the s t e p s t a k e n by an i n d i v i d u a l as he a t t e m p t s t o s o l v e a h e a l t h p r o b l e m ( F a b r e g a 1973; Chrisman 1976 and 1977) . The h e a l t h - s e e k i n g p r o c e s s ( C h r i s m a n 1977) i s d e p i c t e d as f i v e s t e p s : symptom d e f i n i t i o n , i l l n e s s -r e l a t e d s h i f t s i n r o l e b e h a v i o r , l a y c o n s u l t a t i o n and r e f e r r a l , t r e a t m e n t a c t i o n s , and a d h e r e n c e . Two s t u d i e s ( S t i m s o n 1974; H a y e s - B a u t i s t a 1976) f o c u s s p e c i f i c a l l y on t he i n d i v i d u a l ' s p r o b l e m - s o l v i n g i n r e g a r d s t o adherence o r c o m p l i a n c e . 26 S t i m s o n c o n c l u d e d t h a t a p e r s o n w i l l ''evaluate t h e d o c t o r ' s a c t i o n s and i n s t r u c t i o n s , and make h i s own d e c i s i o n about h i s use of m e d i c a t i o n s . . . . The p a t i e n t i s r e p e a t e d l y f a c e d w i t h t h e p r o b l e m of whether he i s d o i n g t h e r i g h t t h i n g w i t h r e g a r d t o h i s h e a l t h " (1974, p. 1 0 3 ) . H a y e s - B a u t i s t a (1976) a n a l y z e d p a t i e n t s ' ( u r b a n C h i c a n o women) p e r c e p t i o n s and e x p l a n a t i o n s o f t h e i r n o n - c o m p l i a n t b e h a v i o r . Non-compliance was seen as a m d d i f i c a t i o n of a t r e a t m e n t p l a n , " t o g a i n a modicum o f c o n t r o l i n an i n t e r a c t i o n w i t h a p r a c t i t i o n e r i n o r d e r t o o b t a i n s a t i s f a c t i o n w i t h t h e t r e a t m e n t " (Hayes-B a u t i s t a 1976, p. 2 3 4 ) . I t was acknowledged t h a t n o n - c o m p l i a n c e c o u l d a l s o be based on o t h e r r e a s o n s , s u c h as f o r g e t t i n g , a l t h o u g h r e a s o n s o t h e r t h a n t h e c o n t r o l i s s u e s were n o t d e v e l o p e d i n t h e p a p e r . These s t u d i e s , a l t h o u g h n o t f o c u s s i n g on e i t h e r t h e s c h i z o p h r e n i c p a t i e n t p o p u l a t i o n or l o n g - t e r m m e d i c a t i o n - t a k i n g , o f f e r some s u g g e s t i o n s as t o how c l i e n t s m i g ht p e r c e i v e and e x p l a i n t h e i r m e d i c a t i o n - t a k i n g b e h a v i o r . A l t h o u g h n o t s p e c i f i c a l l y f o c u s s e d on c o m p l i a n c e , s t u d i e s of t h e e v e r y -day r e a l i t i e s of l i v i n g w i t h c h r o n i c i l l n e s s g i v e i n s i g h t s i n t o t h e p a t -i e n t ' s p e r s p e c t i v e towards m e d i c a t i o n - t a k i n g . Key a s s u m p t i o n s i n t h i s a p p r oach a r e t h a t t h e c h r o n i c a l l y i l l p e r s o n i s c o n c e r n e d w i t h managing h i s l i f e , and t h e demands of h e a l t h regimens w i l l be managed by t h e p a t i e n t i n h i s e f f o r t s t o make a l i f e f o r h i m s e l f ( R e i f 1975). T h i s a p proach c o u l d a l s o be i n c o r p o r a t e d under t h e s e l f - c a r e c o n c e p t . S t u d i e s c o n c e r n e d w i t h l i v i n g w i t h c h r o n i c m e n t a l i l l n e s s have been done u s i n g a s y m b o l i c i n t e r a c t i o n i s t a p p r o a c h towards l a b e l i n g d e v i a n c e , v i e w i n g d e v i a n c e as a r e s u l t of a p r o c e s s of s o c i e t a l d e f i n i t i o n (Scheff-1975) . The c a r e e r o f a m e n t a l p a t i e n t i s d e p i c t e d i n s t a g e s — c o m p l i a n c e b e h a v i o r i n t h e community b e i n g t h e c o n c e r n of t h e p o s t - p a t i e n t phase ( S p i t z e r and D e n z i n 1968) . The d i s c r e d i t a t i o n and d i f f i c u l t i e s of r e -27 i n t e g r a t i o n a s s o c i a t e d w i t h c h r o n i c m e n t a l i l l n e s s a r e themes i n t h i s l i t e r -a t u r e ( M i l l e r 1973; Goffman 1961) . Stigma i s c o n s i d e r e d a major c o n c e p t i n u n d e r s t a n d i n g t h e l i f e o f a d i s c h a r g e d m e n t a l p a t i e n t (Cumming and Cumming 1968; Goffman 1963). A l t h o u g h t h e s e s t u d i e s g e n e r a l l y do n o t p r o v i d e e x p l a n a t i o n s f o r m e d i c a t i o n - t a k i n g , t h e y s u g g e s t i n f l u e n c e s on how p a t i e n t s m i ght p e r c e i v e t h e i r m e d i c a t i o n - t a k i n g . One s t u d y on community c a r e f o r p s y c h o t i c p a t i e n t s ( D a r l e y and Kenny 1971) p o s t u l a t e d t h a t p a t i e n t s f e l t u n c e r t a i n as t o what c o n s t i t u t e d " n o r m a l i t y " and hence r e l i e d on d rugs t o p r e v e n t t h e m s e l v e s from e x p e r i e n c i n g s t r o n g e m o t i o n s , w h i c h t h e y v i e w e d as a b n o r m a l . The s t u d i e s w h i c h have thus f a r been i n c l u d e d i n t h e d i s c u s s i o n of t h e c l i e n t ' s p e r s p e c t i v e have been g e n e r a l l y r e f l e c t i v e of a 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 h e a l t h and i l l n e s s , and p a t i e n t - h o o d . A n o t h e r t h e o r e t i c a l s t a n c e i s p r e s e n t e d by a n t h r o p o l o g i s t s . W h i l e i n c o r p o r a t i n g c o n c e p t s such as i l l n e s s b e h a v i o r and t h u s a t t a c h i n g r e l e v a n c e t o t h e h e a l t h - s e e k i n g frameworks p r o p o s e d by F a b r e g a and C h r i s m a n , t h e a n t h r o p o l o g i c a l v i e w p o i n t i s c o n c e r n e d w i t h c u l t u r e and i t s i n f l u e n c e on b e h a v i o r . H e a l t h b e h a v i o r i s d e t e r m i n e d by h e a l t h c u l t u r e , w h i c h i s d e f i n e d as " a l l t h e phenomenon a s s o c i a t e d w i t h t h e m a i n t e n a n c e of w e l l - b e i n g and problems of s i c k n e s s w i t h w h i c h p e o p l e cope i n t r a d i t i o n a l ways w i t h i n t h e i r own s o c i a l n e t -w o r k s " (Weidman 1975) . T h i s d e f i n i t i o n i n c l u d e s a c o g n i t i v e d i m e n s i o n , b e l i e f s and v a l u e s , and a s o c i a l s y s t e m d i m e n s i o n , the o r g a n i z a t i o n o f h e a l t h c a r e . The o r t h o d o x " s c i e n t i f i c " m e d i c a l s y s t e m i s v i e w e d as a d i s t i n c t i d e o l o g i c a l s y stem, o f t e n i n c o n f l i c t w i t h t h e p a t i e n t ' s v i e w of t h e s i t u a -t i o n . The need t o u n d e r s t a n d t h e p a t i e n t s ' v i e w s , t h e i r E x p l a n a t o r y Model as termed by K l e i n m a n ( 1 9 7 8 ) , i s i m p o r t a n t i n u n d e r s t a n d i n g h e a l t h b e h a v i o r 28 such as c o m p l i a n c e . S t u d i e s i n v o k i n g t h i s p aradigm i l l u s t r a t e how b e h a v i o r l a b e l e d as n o n - c o m p l i a n t and, even g i v e n p s y c h i a t r i c l a b e l s t o a c c o u n t f o r t h e d i v e r g e n c e i n p e r s p e c t i v e , a r e u n d e r s t a n d a b l e w i t h i n t h a t i n d i v i d u a l ' s h e a l t h c u l t u r e ( R e d l e n e r and S c o t t 1979; MacGregor 1967). S t u d i e s r e f l e c t i n g t h e c l i e n t ' s p e r s p e c t i v e c o n t r a s t w i t h t h o s e s t u d i e s done from t h e p r a c t i t i o n e r ' s p e r s p e c t i v e . Non-compliance may be vie w e d as a v a l i d c o u r s e o f a c t i o n from t h e c l i e n t ' s p e r s p e c t i v e . Compliance emerges as a c o n c e p t w h i c h cannot be v i e w e d s i m p l y as a d i s t i n c t b e h a v i o r , b u t must be seen w i t h i n t h e c o m p l e x i t y o f an i n d i v i d u a l ' s l i f e . E. Combined Approaches t o Compliance As our u n d e r s t a n d i n g o f c o m p l i a n c e has become i n c r e a s i n g l y complex, so have t h e models f o r r e s e a r c h . S e v e r a l models e x i s t w h i c h i n c o r p o r a t e two or more of t h e approaches d i s c u s s e d i n t h e f o l l o w i n g s e c t i o n s . F o r example, two models have been p u t f o r w a r d w h i c h combine a s p e c t s of an i n t e r -p e r s o n a l a p p r o a c h and t h e s o c i a l - p s y c h o l o g i c a l models. T o l e d o , Hughes, and Sims (1979) p r e s e n t e d an a p p r o a c h f o r t h e management of n o n - c o m p l i a n c e among p a r e n t s o f c h i l d r e n w i t h c a r d i a c p r o b l e m s . The ap p r o a c h u t i l i z e d R o g e r s ' c l i e n t - c e n t e r e d t h e r a p y i n t h e i n t e r v i e w s i t u a t i o n s , combined w i t h i d e n t i f i c a t i o n o f p a r e n t p e r c e p t i o n s s i m i l a r " : t o t h o s e o u t l i n e d i n the H e a l t h B e l i e f Model ( T o l e d o , Hughes, and Sims ,1979). A n o t h e r group o f r e s e a r c h e r s c o n s t r u c t e d a model p r e d i c t i n g adherence to t r e a t m e n t f o r h y p e r t e n s i o n , i n c l u d i n g c o n c e p t s r e l e v a n t to t h e H e a l t h B e l i e f M o d e l , s u c h as m o t i v a t i o n and p e r c e i v e d u s e f u l n e s s o f t h e a d h e r e n t b e h a v i o r ( C a p l a n e t a l . 1976). Other i m p o r t a n t c o n c e p t s were s o c i a l s u p p o r t and h e a l t h i n f o r m a t i o n . S o c i a l s u p p o r t was d e f i n e d s u b j e c t i v e l y and c o u l d come from a v a r i e t y o f s o u r c e s : f a m i l y , d o c t o r , n u r s e s , and 29 f r i e n d s . The model, r e v i s e d f o l l o w i n g t e s t i n g , i s shown on t h e n e x t page ( F i g u r e 3 ) . C h r i s t e n s e n (1978) p r o p o s e d a m o d i f i c a t i o n of t h e H e a l t h B e l i e f Model t h a t i n c o r p o r a t e d t h e dynamics o f t h e p h y s i c i a n - p a t i e n t r e l a t i o n s h i p and t h e p r o c e s s e s t h r o u g h w h i c h p a t i e n t ' s p e r c e p t i o n s a r e f o r m u l a t e d . "The model adopts t h e p e r s p e c t i v e of t h e p a t i e n t who c o n s t a n t l y r e a s s e s s e s t h e d e c i s i o n t o comply (and t h e e x t e n t o f c o m p l i a n c e ) w i t h p r e s c r i b e d i n s t r u c -t i o n s as he seeks m e d i c a l h e l p and pr o c e e d s t h r o u g h c o n v a l e s c e n c e " ( C h r i s t e n s e n 1978, p. 1 8 2 ) . J e n k i n s (1979) d e v e l o p e d t h e b r o a d e s t c o n c e p t u a l model f o r h e a l t h -r e l a t e d b e h a v i o r . I t i n c l u d e s b e l i e f s , i n c l u d i n g t h o s e of t h e H e a l t h B e l i e f M o d e l ; m o t i v e s ; a c t i o n s ; and t h e e n v i r o n m e n t , w h i c h i n c l u d e s h e a l t h p r o -v i d e r s , t h e immediate s o c i a l e n v i r o n m e n t , and c u l t u r a l f a c t o r s . E. Summary of t h e Review o f t h e Compliance L i t e r a t u r e A p r o g r e s s i o n i s e v i d e n t when one r e v i e w s t h e r e s e a r c h i n t h e f i e l d of c o m p l i a n c e . S t u d i e s i n i t i a l l y i d e n t i f i e d t h e e x i s t e n c e and t h e r a t e s of n o n - c o m p l i a n c e , t h e n i d e n t i f i e d f a c t o r s a s s o c i a t e d w i t h n o n - c o m p l i a n c e , and f i n a l l y sought e x p l a n a t i o n s f o r n o n - c o m p l i a n c e . t S t u d i e s have become i n c r e a s i n g l y complex i n r e g a r d s t o t h e s e e x p l a n a t i o n s . There i s an aware-ness of t h e i m p o r t a n c e o f t h e c l i e n t ' s p e r c e p t i o n s , as d e m o n s t r a t e d by th e number of models w h i c h i n c o r p o r a t e s u b j e c t i v e d a t a . As w e l l , r e c e n t models o f c o m p l i a n c e i n c l u d e t h e i m p o r t a n c e 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 , b o t h w i t h h e a l t h c a r e p r o v i d e r s and t h e s i g n i f i c a n t o t h e r s i n t h e c l i e n t ' s l i f e . The g r o w i n g emphasis p l a c e d on t h e c l i e n t ' s p e r c e p t i o n s and t h e s o c i a l e n v i r o n m e n t l e n d s u p p o r t t o t h e p e r s p e c t i v e a d o p t e d by t h i s s t u d y . n Social-emotional Support of: Spouse Physician 1 Concern of Others -Consequences of Nonadherence Motivation to Adhere (Extrinsic) Intrinsic J" Adherence Less Useful than Other Behaviors Competing Motives Strains Somatic Complaints ^Depression Anxiety Anger-Irritation "High BP Interferes with Activities" 1 Perceived Competence Self-esteem % of Classes Attended Demands of Regimen # Pills: Subjective Objective F Adherence Take Medicines Refill R x Vignettes Learned Health Care Information Knowledge of Regimen TF Test Systolic and Diastolic Blood Pressure Interpretation of the main effects among variables used to test a model of adherence. (Arrows indicate the direction of hypothesized causal relationships. Double headed arrows suggest a reciprocal causality. Dotted arrows indicate a derived rather than direct effect. The signs indicate the direction of the obtained correlations. Arrows entering a panel refer to a specific variable within the panel.) 31 This summary concludes the review of compliance l i t e r a t u r e . The f i n a l s ection of t h i s chapter w i l l be concerned with drug therapy used with c l i e n t s diagnosed as schizophrenic. DRUG THERAPY IN SCHIZOPHRENIA A. Purpose of This Discussion This discussion of drug therapy i n schizophrenia has two purposes: 1. To consider the e f f i c a c y of drug therapy i n the treatment of schizophrenia. Concern about compliance i s only relevant i f the regimen i s e f f i c a c i o u s , otherwise compliance w i l l only increase the patient's chance of inc u r r i n g the deleterious e f f e c t s of treatment with no proven benefits. 2. To present the t h e o r e t i c a l framework of psychiatry i n regards to the use of medication i n the treatment of schizophrenia. The t h e o r e t i c a l framework presented here w i l l be based on l i t e r a t u r e , not s p e c i f i c c l i n i c i a n s , but i t i s hoped that t h i s framework w i l l be generally representative of the c l i n i c i a n s ' perspectives. The c l i n i c i a n ' s perspective determines the prescribed medication patterns and influences the c l i e n t ' s perspective of the s i t u a t i o n . B. Schizophrenia: Etiology, Diagnosis, and Prognosis What i s schizophrenia? This question i s widely debated. Labeling t h e o r i s t s l i k e Scheff (1975) and r a d i c a l p s y c h i a t r i s t s such as Szasz (1968) question the existence of a diagnostic category "schizophrenia. 1.' Psychia-t r i s t s vary i n theories of etiology, diagnostic c r i t e r i a , and possible prognosis, questioning even i f schizophrenia as i t i s now described i s one disease or several. This review w i l l not attempt to present a discus-sion of a l l these issues. Rather, the aim i s to describe generally 32 a c c e p t e d s t a n c e s i n r e g a r d s to e t i o l o g y , d i a g n o s i s , and p r o g n o s i s . P r o p o s e d e t i o l o g i e s of s c h i z o p h r e n i a have been c l a s s i f i e d as b i o l o g -i c a l ( g e n e t i c and b i o c h e m i c a l ) , p s y c h o l o g i c a l ( p s y c h o a n a l y t i c and b e h a v i o r t h e o r y ) , and s o c i a l ( c u l t u r a l and f a m i l y ) ( W i l s o n and K n e i s l 1 9 7 9 ) . A t t h i s t i m e , b i o l o g i c a l t h e o r i e s appear t o be r e c e i v i n g more r e s e a r c h a t t e n -t i o n and g a i n i n g dominance ( H a n s e l l 1 978), however, many c l i n i c i a n s c o n -t i n u e t o a t t r i b u t e s c h i z o p h r e n i a t o a c o m b i n a t i o n of a l l t h e s e e t i o l o g i c a l f a c t o r s . B l e u l e r f i r s t o r i g i n a t e d t h e use of t h e term s c h i z o p h r e n i a . " B l e u l e r ' s s y s t e m o f s c h i z o p h r e n i a i s o f t e n r e f e r r e d t o as t h e f o u r A's: a s s o c i a t i o n , a f f e c t , a u t i s m , and a m b i v a l e n c e " (Freedman, K a p l a n , and SadOck 1976, p. 4 3 7 ) . A v a r i e t y of d i a g n o s t i c frameworks have been d e v e l o p e d , l e a d i n g t o many d e f i n i t i o n s of s c h i z o p h r e n i a . C oncern about t h e c l i n i c a l d e f i n i -t i o n s o f s c h i z o p h r e n i a i n terms o f r e l e v a n c e t o r e c e n t r e s e a r c h , d i a g n o s t i c r e l i a b i l i t y , , p r o g n o s t i c u s e f u l n e s s , and t h e consequences of l a b e l i n g has l e d t o a r e d e f i n i t i o n o f s c h i z o p h r e n i a i n t h e DSM I I I ( S p i t z e r , A n d r e a s e n , and E n d i c o t t 1978) . USM I I I d e s c r i b e s t h e e s s e n t i a l f e a t u r e s of s c h i z o p h r e n i a a s : " t h e p r e s e n c e of c e r t a i n p s y c h o t i c f e a t u r e s d u r i n g t h e a c t i v e phase of t h e i l l n e s s , c h a r a c t e r i s t i c symptoms i n v o l v i n g m u l t i p l e p s y c h o l o g i c a l p r o c e s s e s , d e t e r i o r a t i o n from a p r e v i o u s l e v e l o f f u n c t i o n i n g , o n s e t b e f o r e age 45, and a d u r a t i o n o f a t l e a s t s i x months....At some phase of t h e i l l n e s s s c h i z o p h r e n i a always i n v o l v e s d e l u s i o n s , h a l l u c i n a t i o n s , o r c e r t a i n d i s -t u r b a n c e s i n t h e form o f t h o u g h t " (p. 1 8 1 ) . The DSM I I I d e s c r i b e s s e v e r a l c o u r s e s f o r s c h i z o p h r e n i a : s u b c h r o n i c , c h r o n i c , s u b c h r o n i c w i t h a c u t e e x a c e r b a t i o n , c h r o n i c w i t h a c u t e e x a c e r b a -t i o n , and i n r e m i s s i o n . I t s t a t e s t h a t a c o m p lete r e t u r n t o p r e m o r b i d 33 functioning i s unusual, but not excluded — the incidence unknown. Studies have been concerned with the identification of factors assoc-iated with a good prognosis (Stephens 1978; Vaillant .1978a, 1978b; Strauss and Carpenter 1978) . One approach has been the differentiation of process and reactive schizophrenia, reactive schizophrenia having a more rapid onset and a good prognosis. Although these categories are not generally agreed upon, DSM I I I has reserved the term schizophrenia for illnesses with at least a six month duration, thereby excluding shorter duration psychotic episodes. Strauss and Carpenter (1978) have divided outcome into four categories, which they see as largely independent of one another: symptom severity, duration of hospitalization, social relations functioning, and occupational functioning. With each of these categories except symptom severity, the previous level of functioning in that category is the best predictor of outcome. Cross-cultural studies have revealed interesting data concern-ing outcome. Industrialized nations have poorer rates of outcome than non-industrial countries, suggesting societal expectations influence the course of the illness (Waxier 1979) . C. The Efficacy of Drug Therapy The previous section has described schizophrenia as a generally chronic il l n e s s , but with possible remission. What role does medication play in the course of this illness? Many consider the introduction of medication to have revolutionized the treatment of schizophrenia. The use of major tranquilizers in the treatment of acute episodes appears to be relatively undisputed (Stephens 1978; Davis 1976). As mentioned in Chapter One, medication is one of the major treatment modalities with 34 l o n g - t e r m s c h i z o p h r e n i c p a t i e n t s . S t u d i e s have documented t h a t m e d i c a t i o n i s b e n e f i c i a l i n p r e v e n t i n g r e l a p s e i n terms of r e h o s p i t a l i z a t i o n ( H o g e r t y , G o l d b e r g , e t a l . 1973). C e s s a t i o n o f m e d i c a t i o n , t h a t i s , n o n - c o m p l i a n c e , i s a c o n f o u n d i n g v a r i a b l e i n s t u d i e s d i r e c t e d a t t e s t i n g t h e e f f i c a c y of m e d i c a t i o n s . A f u r t h e r c o m p l i c a t i o n i s awareness of t h e n o n - s p e c i f i c a s p e c t s o f drug t h e r a p y ( i n c l u d i n g what has been commonly r e f e r r e d t o as t h e p l a c e b o e f f e c t ) , a l t h o u g h i t i s f e l t " t h a t t h e n o n - s p e c i f i c f a c t o r s i n t r e a t m e n t r e s p o n s e a r e c o n s i d e r a b l y l e s s p o w e r f u l . i n s c h i z o p h r e n i a than a r e t h e s p e c i f i c e f f e c t s o f t h e d r u g " ( C o l e , B o n a t o , and G o l d b e r g 1968, p. 126) . However, a l o n g w i t h t h e c o n v i c t i o n t h a t m a i n t e n a n c e a n t i - p s y c h o t i c m e d i c a t i o n i s i n d i c a t e d i n t h e t r e a t m e n t of s c h i z o p h r e n i a , t h e r e i s g r o w i n g awareness t h a t n o t a l l p a t i e n t s w i l l b e n e f i t . As w e l l , t h e l o n g - t e r m s i d e e f f e c t s , i n p a r t i c u l a r t a r d i v e d y s k i n e s i a , a r e so d e b i l i t a t i n g as t o r e q u i r e s e r i o u s c o n s i d e r a t i o n o f drug t h e r a p y . There a r e two groups o f p a t i e n t s who m i g h t be b e s t t r e a t e d w i t h o u t m e d i c a t i o n : t h o s e who do w e l l w i t h o u t them and t h o s e who do v e r y p o o r l y w i t h o r w i t h o u t drugs (Marder e t a l . 1979). As w e l l , D a v i s (1975) n o t e s t h a t o c c a s i o n a l l y c h r o n i c a l l y i l l p a t i e n t s w i l l do b e t t e r when dr u g s a r e w i t h d r a w n . Thus t h e p i c t u r e be-comes b l u r r e d . From t h e p o i n t o f v i e w o f c o m p l i a n c e r e s e a r c h , some c l i e n t s may e x p e r i e n c e no c l i n i c a l change r e g a r d l e s s o f m e d i c a t i o n - t a k i n g p r a c -t i c e s . From a n o t h e r p o i n t of v i e w , the c l i n i c i a n i s c o n f r o n t e d w i t h t h e m e d i c a t i o n - p r e s c r i b i n g d e c i s i o n s o f : what p a t i e n t ? , on what m e d i c a t i o n ? , a t what dosage?, and f o r how l o n g ? A l t h o u g h r e s e a r c h i s b e i n g c o n d u c t e d to i d e n t i f y t h o s e c l i e n t s who woul d b e n e f i t most from m e d i c a t i o n (Marder e t a l . 1979), and some g u i d e l i n e s a r e emerging, t h i s i s a d e v e l o p i n g and i n e x a c t s c i e n c e a t t h i s t i m e . '35 D. M e d i c a t i o n Regimens H a v i n g i d e n t i f i e d t h a t a p r o p o r t i o n of s c h i z o p h r e n i c p a t i e n t s r e q u i r e l o n g - t e r m m e d i c a t i o n t h e r a p y , g e n e r a l l y a c c e p t e d i d e a s c o n c e r n i n g a n t i -p s y c h o t i c m e d i c a t i o n regimens w i l l now be d i s c u s s e d . R e g a r d l e s s of recommended m e d i c a t i o n s , dosages, and d u r a t i o n o f t r e a t m e n t , one i m p o r t a n t v a r i a b l e emphasized i n t h e l i t e r a t u r e i s the i m p o r t a n c e of i n d i v i d u a l f a c t o r s , f o r example m e t a b o l i c d i f f e r e n c e s , i n r e s p o n s e t o t h e d r u g s . These f a c t o r s n e c e s s i t a t e c o n s i d e r a t i o n of each p a t i e n t ' s i n d i v i d u a l s i t u a t i o n ( H a m i l t o n 1968; Mendel 1975). A n t i - p s y c h o t i c m e d i c a t i o n s — p h e n o t h i a z i n e s , b u t y r o p h e n o n e s , t h i o x a n t h e n e s , d i h y d r o - i n d o l o n e s , and d i b e n z o x a z e p i n e s — a r e thought to be g e n e r a l l y e q u a l l y e f f e c t i v e i n t r e a t i n g s c h i z o p h r e n i a . C r i t e r i a f o r c h o o s i n g t h e a p p r o p r i a t e m e d i c a t i o n f o r each p a t i e n t a r e : t h e s i d e e f f e c t s o f t h e v a r i o u s m e d i c a t i o n s , t h e p h y s i c i a n ' s knowledge about t h e m e d i c a t i o n , c o s t , and t h e p a t i e n t ' s d r u g h i s t o r y ( A p p l e t o n and D a v i s 1973). The s i d e e f f e c t s v a r y ; t h e y can i n c l u d e s e d a t i o n , h y p o t e n s i o n , a t r o p i n e -l i k e s i d e e f f e c t s , p h o t o t o x i c i t y , and e x t r a p y r a m i d a l s i d e e f f e c t s such as d y s k i n e s i a , a k i n e s i a , and a k a t h i s i a ( A p p l e t o n and D a v i s 1973). A n t i -p a r k i n s o n i a n d r u g s a r e p r e s c r i b e d t o m i n i m i z e some of t h e s e s i d e e f f e c t s ; p r a c t i c e v a r i e s as t o whether t o p r e s c r i b e a n t i - p a r k i n s o n i a n drugs r o u t i n e l y o r as s i d e e f f e c t s o c c u r . W h i l e p r e s c r i b i n g g u i d e l i n e s do e x i s t , recommended dosages f o r b o t h a c u t e and c h r o n i c c a r e can v a r y w i d e l y . The recommended s t r a t e g y i s to t i t r a t e on an i n d i v i d u a l b a s i s , w i t h c a u t i o n s about b o t h o v e r - and u n d e r -m e d i c a t i n g . Hence c o n s i d e r a b l e onus i s p l a c e d on t h e p r a c t i t i o n e r t o d e t e r m i n e what i s a s u i t a b l e dosage f o r each c l i e n t , " t h e minimum dosage f o r o p t i m a l f u n c t i o n i n g " ( A p p l e t o n and D a v i s 1973, p. 4 8 ) . I n o r d e r to 36 m i n i m i z e t h e d e l e t e r i o u s e f f e c t s of l o n g - t e r m m e d i c a t i o n s , d r u g h o l i d a y s , r e g u l a r p e r i o d s o f t i m e w i t h o u t m e d i c a t i o n , have been recommended. These h o l i d a y s a r e p o s s i b l e due t o t h e s l o w e x c r e t i o n of t h e m e d i c a t i o n a l l o w -i n g w i t h d r a w a l o f t h e drugs f o r s h o r t t i m e p e r i o d s . T r i a l s o f b o t h l o w e r e d dosages and d r u g - f r e e p e r i o d s a r e a l s o recommended to a s c e r t a i n p a t i e n t s ' c o n t i n u i n g m e d i c a t i o n r e q u i r e m e n t s ( D a v i s 1975) . The work on c o m p l i a n c e and s c h i z o p h r e n i a has been r e v i e w e d i n t h e p r e c e d i n g s e c t i o n s o f t h i s c h a p t e r . A l t h o u g h t h e m a j o r i t y of a n t i - p s y c h o t i c m e d i c a t i o n s a r e i n t a b l e t f o r m , a few l o n g - a c t i n g i n j e c t a b l e m e d i c a t i o n s have been d e v e l o p e d and a r e recommended f o r " p a t i e n t s who cannot be t r u s t e d t o t a k e t h e i r p i l l s " ( A p p l e t o n and D a v i s 1973, p. 4 9 ) . O n c e - d a i l y dosage s c h e d u l e s a r e s u g g e s t e d f o r p a t i e n t s on l o n g - t e r m o r a l m e d i c a t i o n s . The n a t u r e of t h e p r a c t i t i o n e r - p a t i e n t r e l a t i o n s h i p i n r e g a r d t o m e d i c a t i o n management has had an i n t e r e s t i n g h i s t o r y i n p s y c h i a t r y . I n i t i a l l y , many p s y c h o t h e r a p i s t s eschewed t h e n o t i o n of p r e s c r i b i n g m e d i c a -t i o n as i t would d i s t o r t t h e p s y c h o t h e r a p e u t i c , i n most c a s e s p s y c h o a n a l y -t i c , r e l a t i o n s h i p . As m e d i c a t i o n s became more a c c e p t e d , p r a c t i t i o n e r s p r e s c r i b e d m e d i c a t i o n , but p a t i e n t i n p u t i n t h i s p r o c e s s tended to be m i n i m a l , as was t h e c a s e f o r m e d i c a l p r a c t i c e i n g e n e r a l . However, p s y c h -i a t r y . . h a d t h e a d d i t i o n a l c o m p l i c a t i o n s o f b o t h t h e i s s u e of t h e p a t i e n t ' s r a t i o n a l i t y and t h e n o t i o n of t h e u n c o n s c i o u s , w h i c h encouraged p r a c -t i t i o n e r s t o i n f e r m o t i v a t i o n s i n r e g a r d s t o m e d i c a t i o n - t a k i n g r a t h e r t h a n seek o u t t h e p a t i e n t ' s o p i n i o n s and c o n s c i o u s m o t i v a t i o n s . As p r e v i o u s l y m e n t i o n e d , t h e recommended t r e n d i n h e a l t h c a r e i s t o -ward a t h e r a p e u t i c a l l i a n c e , b o t h p r a c t i t i o n e r and p a t i e n t p a r t i c i p a t i n g i n t h e d e c i s i o n - m a k i n g . H a n s e l l (1978) has s u g g e s t e d s c h i z o p h r e n i c s be i n v o l v e d i n t h e s e l f - r e g u l a t i o n of t h e i r m e d i c a t i o n , a d j u s t i n g t h e i r med-37 i c a t i o n s w i t h i n a p r e s c r i b e d range a c c o r d i n g t o s u c h f a c t o r s as s i d e e f f e c t s , l i f e s t r e s s e s , and o n s e t o f symptoms. B o t h e d u c a t i o n a l m a t e r i a l s and group e x p e r i e n c e s d e s i g n e d t o enhance t h e p a t i e n t ' s a b i l i t y f o r s e l f - r e g u -l a t i o n a r e recommended ( H a n s e l l 1978). T h i s i s a d r a m a t i c s h i f t from t h e d i s c u s s i o n as t o whether p a t i e n t s s h o u l d be i n f o r m e d of s i d e e f f e c t s o f m e d i c a t i o n s (Myers and C a l v e r t 1979) . E. C o n c l u s i o n T h i s d i s c u s s i o n has p r e s e n t e d s c h i z o p h r e n i a as an i l l n e s s w i t h p o s s i b l e l o n g - t e r m , i f n o t l i f e - l o n g , d i s a b i l i t y . M a i n t e n a n c e m e d i c a t i o n i s h i g h l y d e s i r a b l e f o r some s c h i z o p h r e n i c s . However, c l i n i c a l d e c i s i o n s must be made as t o w h i c h c l i e n t s w i l l b e n e f i t from m e d i c a t i o n s and a l s o as to what m e d i c a t i o n r e g i m e n i s most s u i t a b l e . The p a r t i c i p a t i o n o f t h e c l i e n t i n t h e s e d e c i s i o n s i s now b e i n g a d v o c a t e d . As mentioned i n t h e i n t r o d u c t i o n t o t h i s s e c t i o n , t h e e f f i c a c y of drug t h e r a p y has been c o n s i d e r e d i n o r d e r t h a t t h e r e l e v a n c e o f t h e phenom-enon " c o m p l i a n c e " can be more f u l l y e v a l u a t e d . T h i s d i s c u s s i o n has d i s -p l a y e d t h e p e r s p e c t i v e o f s c i e n t i f i c m e d i c i n e as r e p r e s e n t e d i n a r t i c l e s , t e x t s , e t c . towards m e d i c a t i o n - t a k i n g . T h i s p e r s p e c t i v e can be compared w i t h t h a t o f t h e c l i e n t s r e p r e s e n t e d i n Cha p t e r Four and w i l l be d i s c u s s e d i n C h a p t e r F i v e . 38 CHAPTER I I I : - METHODOLOGY INTRODUCTION T h i s c h a p t e r d e s c r i b e s how the r e s e a r c h d a t a was o b t a i n e d . The f o l l o w i n g t o p i c s w i l l be d i s c u s s e d : t h e s e l e c t i o n of p a r t i c i p a n t s , d a t a c o l l e c t i o n , d a t a a n a l y s i s , and e t h i c a l c o n s i d e r a t i o n s . As d e s c r i b e d i n C h a p t e r One, t h e r e s e a r c h methodology used i n t h i s s t u d y was g u i d e d by s t u d i e s done w i t h i n t h e q u a l i t a t i v e p a radigm. Such works i n c l u d e S t o d d a r d ( 1 9 7 4 ) , B e c k e r ( 1 9 7 3 ) , Lindemann ( 1 9 7 4 ) , B l a x t e r ( 1 9 7 6 ) , C o t t l e ( 1 9 7 7 ) , and F i l s t e a d ( 1 9 7 0 ) . THE SELECTION OF PARTICIPANTS T h i s s t u d y i s c o n c e r n e d w i t h m e d i c a t i o n - t a k i n g i n p e r s o n s d i a g n o s e d as s c h i z o p h r e n i c . The m e d i c a t i o n s i n q u e s t i o n a r e o r a l a n t i - p s y c h o t i c m e d i c a t i o n s . I t has been s u g g e s t e d t h a t c o m p l i a n c e r e s e a r c h i s most m e a n i n g f u l i f done w i t h a s p e c i f i c c l i e n t group and an acknowledged e f f i c a -c i o u s regimen f o r t h a t p o p u l a t i o n . Thus, t h e c l i e n t group s t u d i e d i s a l o g i c a l group from t h e s t a n d p o i n t o f c o m p l i a n c e r e s e a r c h . Whether t h i s c l i e n t group i s a l o g i c a l c a t e g o r y from t h e i r ( t h e c l i e n t s ' ) p e r s p e c t i v e i s n o t known. Perhaps a l l p a t i e n t s on a l l m e d i c a t i o n s s h a r e some o r even a l l o f t h e p e r s p e c t i v e s of t h i s g r oup. As c o m p a r a t i v e work has not been done, what m i g h t be l o g i c a l g r o u p i n g s based on t h e c l i e n t s ' p e r s p e c t i v e s a r e n o t known a t t h i s t i m e . There were advantages i n s t u d y i n g a s p e c i f i c c l i e n t p o p u l a t i o n and a s p e c i f i c r e g i m e n f o r t h e r e s e a r c h e r as c o mparisons c o u l d be e a s i l y made between t h e p e r s p e c t i v e s s h a r e d by t h e c l i e n t s and t h e p e r s p e c t i v e s of s c i e n t i f i c m e d i c i n e . The i n i t i a l group f o r t h e s t u d y was a l o n g - t e r m o r c h r o n i c p o p u l a t i o n 39 group. The c r i t e r i a for s e l e c t i n g t h i s group were: - age 25-59 years - a minimum of two h o s p i t a l i z a t i o n s with the discharge diagnosis of schizophrenia - r e s i d i n g i n his/her own residence, or a r e s i d e n t i a l f a c i l i t y i n which the c l i e n t has r e s p o n s i b i l i t y for taking his/her own medication, for at l e a s t s i x months - currently being prescribed (although not n e c e s s a r i l y always taking) o r a l anti-psychotic medications: phenothiazines, butyrophenones, thioxanthenes, dihydroindolones, and dibenzoxapines - able to converse i n English The r a t i o n a l e s for these c r i t e r i a w i l l be discussed b r i e f l y . The upper age l i m i t of 59 years was set to d e l i b e r a t e l y exclude persons who might be c l a s s i f i e d as e l d e r l y , due to the unique medication-taking d i f f i -c u l t i e s that have been associated with that group. The lower age l i m i t of no younger than 25 years and the minimum of two h o s p i t a l i z a t i o n s with a diagnosis of schizophrenia was due to the emphasis on a t y p i c a l long-term or chronic population. The residence requirements and the l i m i t a t i o n to o r a l medications were designed to obtain subjects who were responsible for the administration of t h e i r medications, and therefore would have some notions d i r e c t i n g t h e i r medication-taking as well as the opportunity to adapt medication-taking to th e i r everyday l i f e . Ten such p a r t i c i p a n t s were sought. C l i e n t s i n r e s i d e n t i a l care, on i n j e c t a b l e medications, or recently discharged were excluded from t h i s i n i t i a l sample for these reasons. The procedure by which t h i s group was obtained w i l l now be described. Using the c r i t e r i a provided by the researcher, the therapists at two 40 Greater .Vancouver Mental Health Service Community Care Teams i d e n t i f i e d s u i t a b l e subjects from th e i r c l i e n t populations. The therapists then i n -formed p o t e n t i a l subjects of the study, using an information l e t t e r pro-vided by the researcher (Appendix A). If a c l i e n t agreed to p a r t i c i p a t e , two consent forms were signed (Appendix B and C). One form (B) was concerned with consent for p a r t i c i p a t i n g i n the study and s p e c i f i e d : there was no r i s k to subjects from p a r t i c i p a t i n g , the subject's p a r t i c i p a t i o n was volun-tary, that subjects might withdraw at any time, that r e f u s a l to p a r t i c i -pate i n the study or withdrawal from the study i n no way i n t e r f e r e d with the treatment received, and that any information personally i d e n t i f y i n g the subject would remain s t r i c t l y c o n f i d e n t i a l . The second consent form (C) was necessary for permission f o r the audio-taping of the interviews. When the consent forms were signed, the therapist n o t i f i e d the researcher who then contacted the subject by phone, or mail when the subject did not have a phone, to arrange a mutually convenient time to meet. In the course of obtaining s u i t a b l e subjects, the researcher was made aware of the large number of schizophrenic c l i e n t s who are on i n j e c t a b l e medications as compared with those on o r a l medications, thereby l i m i t i n g the number of p o t e n t i a l subjects. This awareness also raised questions as to whether those persons on o r a l medications would be t y p i c a l of the chronic population at large. As w e l l , several c l i e n t s approached by the therapists did not wish to p a r t i c i p a t e and two persons who had signed consent forms withdrew from the study p r i o r to the f i r s t interview. These events r a i s e the question "who are those persons that agreed to p a r t i c i p a t e ? " The researcher's common-sense appraisal of t h i s patient group, which ultimately consisted of nine subjects, two males and seven females, was 41 that they were i n f a c t t y p i c a l of the chronic population at large. Their ages ranged from 30 years to the mid-50's, the length of time on a n t i -psychotic medication varied from 5 years to about 25 years. A wide v a r i e t y of commonly-used anti-psychotic medications were represented, for example, chlorpromazine, h a l o p e r i d o l , t r i f l u o p e r a z i n e , and t h i o r i d a z i n e . One person was receiving i n j e c t a b l e medication, fluphenazine, i n addition to o r a l medications; four others had been on long-acting i n j e c t a b l e medica-tions i n the past. Most subjects had more than the minimum of two h o s p i t a l -i z a t i o n s , some of these h o s p i t a l i z a t i o n s l a s t i n g t e n - f i f t e e n years. The l i v i n g s i t u a t i o n s v a r i e d : four were l i v i n g on t h e i r own; three with t h e i r f a m i l i e s , either spouses or o f f s p r i n g ; and two i n group s i t u a t i o n s . Two persons were employed on a f u l l - t i m e basis; some were employed part-time, including work-shops and equivalent s i t u a t i o n s ; and some were unemployed outside the home. As i s t y p i c a l i n q u a l i t a t i v e research, the design of the study had made provision for a d d i t i o n a l p a r t i c i p a n t s as might be necessary to answer research questions a r i s i n g i n the process of i n v e s t i g a t i o n (Lindemann 1974) . The need for a d d i t i o n a l p a r t i c i p a n t s i n t h i s study was i d e n t i f i e d when i t was determined that one member of the chronic population group interviewed did not meet the c r i t e r i a f o r that group. Rather, t h i s sub-j e c t was representative of a short-term or acute i l l n e s s population. This subject presented notions about medication-taking which appeared to be related to a "short-term i l l n e s s " perspective. In order to more f u l l y appreciate the s i m i l a r i t i e s and differences i n a "short-term" versus a "long-term" perspective a d d i t i o n a l "short-term" subjects were sought. Only one such subject (using the two G.V.M.H.S. Teams used previously) was w i l l i n g to p a r t i c i p a t e i n the study. The c r i t e r i a describing the 42 two "short-term" subjects are: age 20-30 years; only one 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 , with a discharge diagnosis of schizophrenia; and d i s -charge from h o s p i t a l within the past eight months. The c r i t e r i a r elated to type of residence, types of medication, and a b i l i t y to converse.in English were the same as with the previous group. DATA COLLECTION The data was c o l l e c t e d v i a interviews. Ten subjects were interviewed twice, as had been planned. A second interview was not sought with the one a d d i t i o n a l subject meeting the short-term c r i t e r i a . The interviews were taped, although mechanical taping d i f f i c u l t i e s encountered i n three interviews ^ necessitated that the researcher use written notes as well for those s i t u a t i o n s . The interviews varied from about f o r t y to ninety minutes i n length. A written interview guide was developed (Appendix D). Based on Schutz' (1967) notion of a course-of-action, the interview guide included past, present, and future influences on the p a r t i c i p a n t s ' actions. As the researcher was seeking the subject's perspective, the researcher attempted to use open-ended questions and explore the meaning of the sub-j e c t ' s responses. In the f i r s t interview s i t u a t i o n with each subject, the guide served as a screening device to check whether a l l s i g n i f i c a n t areas had been covered. I t also served as an interview t o o l i n s i t u a t i o n s where the subject tended to be reserved during the interview. The guide was modified i n the course of these i n i t i a l interviews. The second i n t e r -view with each subject was based on questions which arose from the analysis of the i n i t i a l interviews. A course-of action i s a~ useful way of understanding human behavior which d i r e c t s consideration of the past and future motives and goals of the i n d i v i d u a l , and the context of the i n d i v i d u a l ' s environment relevant to that action (Schutz 1967) . 43 Two aspects of the data c o l l e c t i o n process w i l l be discussed i n greater depth, to describe more f u l l y the process of q u a l i t a t i v e research These aspects are the construction of an account and the management of th interview s i t u a t i o n . A. The Construction of an Account The term account i s used i n reference to the d e s c r i p t i v e data report i n t h i s study. The use of the term account recognizes that knowledge i s constructed; knowledge or " f a c t s " of events are dependent on the inter-pretations and characterizations of the p a r t i c i p a n t s . The accounts of medication-taking presented i n th i s study represent the subjects' perspec-t i v e s at that ipoint i n time, as constructed by both the subjects and the researcher. The construction of an account i s an active process for both the pa r t i c i p a n t s and the researcher. R*: Do you think being o f f of the medication had anything to do with your going to the hospital? S*: Oh, gosh no — uh — i t might have, i t might have — to an extent i t might have. I might have been able to ta l k about my problems instead of j u s ' l e t t i n g i t a l l get i n my head and having a l l those awful thoughts. R: I'm thinking about t h i s 'lazy f e e l i n g ' that you get; you, you r e l a t e that to being on- p i l l s ? S: No — I never r e a l l y thought about i t u n t i l now. R: I see. Uh-huh. What do you think 'the l a z i n e s s ' i s due - ? S: Well, come to think of i t , I think i t i s uh from the p i l l s because they quiet me down so much. * R symbolizes the researcher. * S symbolizes the su b j e c t / p a r t i c i p a n t . 44 These p a r t i c u l a r examples were chosen to i l l u s t r a t e the way i n which both the subject and the researcher, i n making sense of the s i t u a t i o n , construct the account. Although the researcher's intent was to obtain the subject's view of the s i t u a t i o n , the researcher's own i n t e r p r e t i v e competence necessarily contributes to account construction. In seeking to understand the p a r t i c i p a n t s , the researcher tended to l i s t e n , recount, reword, ask for elaboration, and summarize. The researcher was conscious of the problems of influ e n c i n g the accounts by assuming too active a r o l e i n the interview. This was p a r t i c u l a r l y a problem when discussing those topics which subjects found d i f f i c u l t to discuss, for whatever reasons. R: I'm a f r a i d to say more because I'm a f r a i d that I put words into your mouth i f I say too much about i t , so I guess I'd better j u s t leave that! Becker and Geer (1970) note people may ...not t e l l an interviewer a l l the things he might want to know. This may be because they/do not want to, f e e l i n g that to speak of some p a r t i c u l a r subject would be i m p o l i t i c , impolite, or i n s e n s i t i v e , because they do not think to and because the interviewer does not have enough information to inquire into the matter, or because they are not able to.... Many events occur i n the l i f e of a s o c i a l group and the ex-perience of an i n d i v i d u a l so r e g u l a r l y and uninterruptedly, or so q u i e t l y and unnoticed, that people are hardly aware of them, and do not think to comment on them...or they may never have become aware of them at a l l and be unable to answer even d i r e c t questions (Becker and Geer 1970, p. 130). The researcher's experience i s consistent with those comments, as subjects had d i f f i c u l t i e s v e r b a l i z i n g some ideas and appeared uncomfortable d i s -cussing some subjects, such as the moral implications of medication-taking and t h e i r current negotiations with health professionals i n regards to the medications. S: I've never had to explain i t , because I very seldom t e l l anyone about i t . S: I don't know — I j u s t , I j u s t sort of l i k e , l i k e the, 45 l i k e that — I don't know. I j u s t sort of l i k e i t that way, you know. The types of issues which,_ sub j ects, f i n d d i f f i c u l t to discuss w i l l vary according to t h e i r i n d i v i d u a l s i t u a t i o n s , but those issues w i l l also vary according to how they view the interviewer. The knowledge that the researcher was a nurse who had worked i n community mental health i n -fluenced t h e i r responses. For example, the subjects' hesitancy i n describ-ing t h e i r perceptions of the actions of the medication was influenced, as they were concerned about the s c i e n t i f i c adequacy of t h e i r responses. This knowledge of the researcher also hampered the degree to which the researcher could assume a neutral, naive approach to some of the data; t h i s approach i s us e f u l i n discussing "taken-for-granted" aspects of t h e i r experience. However, the nursing r o l e also gave a legitimacy to i n q u i r i e s which, as stated by the subjects, gave subjects confidence i n the re-searcher's "sense" and encouraged them to "go into the s p e c i f i c s . " The accounts were also influenced by the subjects' agendas for the interviews and what they perceived the researcher's purpose to be. The researcher attempted to e l i c i t t h i s information from the subjects. S: So you must grow too from t h i s , i n making, uh, sense out of what everybody says and t r y i n g to understand i t . R: Can you j u s t t e l l me about how i t was that you decided to t e l l me about those? S: Well that was your study. R: Uh-hmm. S: That was ju s t your study, that's a l l . R: What were your expectations about what we would be ta l k i n g about? S: Well, nothing r e a l l y , I j u s t thought, "Well, i t ' s a young 46 g i r l doing her the s i s , and she j u s t wants to know about medications. She may,," and you may pass — and, um, I don't know, you may become a great doctor or something (laughs) or a great nurse, or whatever you're going i n f o r . I don't know. Subjects were also concerned about t h e i r performance, i f they were doing an adequate job for the researcher's purposes. In some instances, subjects requested knowledge of the questions to be asked i n the next i n t e r -view i n order to "explain things better to you." S: I j u s t hope I'm t e l l i n g you things — I think I'm helping you though. R: Uh-hmm. S: There wouldn't be many people that would t a l k about some of the. things — S: I f e e l very f o o l i s h saying that, I think I'm not helping you. R: Oh, why, why do.you f e e l that way? S: Uh, I don't know, maybe I'm so quiet that I don't say very much. i S: . . . l a s t time, sometimes I had to think so long for an answer. Well, sometimes I thought, "well you'd get more help or learn more from someone quick with the answers." Accounts are subject to change, as persons redefine t h e i r s i t u a t i o n . Subjects gave evidence of how t h e i r d e f i n i t i o n s of the s i t u a t i o n had changed over time by comparing t h e i r current perspectives with t h e i r past perspectives. As w e l l , subjects "remembered" things i n the course of the interviews, which thus changed the account. The content of the f i r s t and second interviews was: generally quite consistent in terms of major con-cerns and the way i n which events were described. However, discrepancies were evident and could be c l a s s i f i e d under three categories: re-evaluation of former statements r e s u l t i n g i n a desire to change the account; a change 47 i n t h e s i t u a t i o n , s u c h as a change i n m e d i c a t i o n , r e s u l t i n g i n a r e - e v a l u a -t i o n and r e d e f i n i t i o n o f t h e s i t u a t i o n ; and changes i n t h e second a c c o u n t c o n t r a d i c t i n g some i n f o r m a t i o n i n t h e f i r s t a c c o u n t w i t h no e x p l a n a t i o n o f f e r e d . R e - e v a l u a t i o n o f former s t a t e m e n t s and " c o r r e c t i n g " t h e a c c o u n t t o o k t h e f o r m o f a l e t t e r t o t h e r e s e a r c h e r i n one s i t u a t i o n . I n a n o t h e r s i t u a t i o n , a s u b j e c t commenced t h e second i n t e r v i e w by " c o r r e c t i n g " some a s p e c t s o f t h e f i r s t i n t e r v i e w . The i d e o l o g i c a l i n f l u e n c e s on t h e c o n t e n t o f t h e a c c o u n t s c o u l d be i d e n t i f i e d as t h e s u b j e c t s ' own sense m a k i n g / l a y i d e o l o g y ; s c i e n t i f i c i d e o l o g y ; and r e l i g i o u s i d e o l o g y . The r e s e a r c h e r a t t e m p t e d t o suspend t h e t h e r a p i s t ' s p e r s p e c t i v e , based on s c i e n t i f i c i d e o l o g y , and p u r s u e t h e sense making p r a c t i c e s of t h e s u b j e c t s . However, :the t h e r a p i s t ' s p e r s p e c t i v e no doubt i n f l u e n c e d what was p u r s u e d and what wasn't; t h e r a p i s t / r e s e a r c h e r r o l e c o n f l i c t i s a l s o a p p a r e n t i n t h e management o f t h e i n t e r v i e w s i t u a t i o n . B. Management of t h e I n t e r v i e w S i t u a t i o n I n t h e p r e v i o u s d i s c u s s i o n , t h e c o n s t r u c t i o n of t h e a c c o u n t s was a d d r e s s e d . The management o f t h e i n t e r v i e w v i e w s t h e i n t e r v i e w s i t u a t i o n as a s i t u a t i o n - t o - b e - m a n a g e d from t h e r e s e a r c h e r ' s p o i n t of v i e w . B o t h t h e r e s e a r c h e r ' s and s u b j e c t ' s a n x i e t y a r e e l e m e n t s of t h e a c c o u n t s . As m entioned p r e v i o u s l y , t h e r a p i s t / r e s e a r c h e r r o l e c o n f l i c t was a s o u r c e of a n x i e t y t o t h e r e s e a r c h e r , w o r k i n g out s u c h problems as how o p e n l y s e n s i t i v e t o be i n r e g a r d s t o a p a r t i c i p a n t ' s a n x i e t y l e v e l and how a c t i v e t o be i n a n x i e t y r e d u c t i o n . A l t h o u g h t h e r e i s a good d e a l of o v e r l a p i n good i n t e r v i e w i n g t e c h n i q u e s f o r r e s e a r c h and good i n t e r v i e w i n g t e c h n i q u e s f o r t h e r a p y ( D a v i s 1 9 7 8 ) , t h e r e were b o t h s t y l e and c o n t e n t i s s u e s w h i c h needed t o be worked o u t i n t h e p r o c e s s o f d o i n g t h e i n t e r -v i e w s . S i t u a t i o n s i n w h i c h s u b j e c t s e x p r e s s e d s t r o n g emotions such as 48 sadness or anger, self-deprecating ideas, or s u i c i d a l thoughts r e q u i r i n g further explorations presented p a r t i c u l a r problems i n t h i s area. Another source of management d i f f i c u l t y arose i n the form of i n t e r -view circumstances: events such as mechanical tape-recorder d i f f i c u l t i e s other persons present or dropping-in during the interviews, time con-s t r a i n t s imposed by the subjects, and one subject being "taken by s u r p r i s due to a misunderstanding of interview dates. The researcher was i n the p o s i t i o n of being a guest i n people's homes and yet having to take the i n i t i a t i v e i n discussing with the subjects how these s i t u a t i o n s were to b managed. For example, did the subject wish to continue the interview i n the presence of another person? Subjects expressed and appeared more com f o r t a b l e than the researcher f e l t i n r e l a t i o n to the presence of others. The fa c t that subjects also have purposes for the interviews was mentioned i n connection with the construction of the accounts. These pur poses present s i t u a t i o n s to be managed by the researcher, p a r t i c u l a r l y i f the researcher f e e l s unable to meet the expectations of the subject. Occasionally subjects would ask the researcher's opinion about every-day l i f e matters, for example, "Would you be scared without, without a door without any screws on i t ? " (The door lock had some screws missing.) More d i f f i c u l t was the s i t u a t i o n i n which the subject hoped the outcome of the interviews would be advisement "as to what p i l l s I should take." P a r t i c i p a n t s would also ask questions about the medication and t h e i r i l l n e s s i n the course of the interviews. The researcher used a v a r i e t y of techniques to deal with these questions. Most frequently the question was treated as data for further discussion. The researcher asked whether th i s was something about which the subject was concerned or r e f l e c t e d the 49 question back to the subject: "what do you think about that?'" Occasion-ally, due to the direct or ; repeated nature of the question, the researcher would explain the nature of her role to the subjects, indicating she was not in a position to give information. One subject responded to this information with " T e l l me later,", indicating her/his notions that the researcher was "in face" or "in role" at that time, but that that role could be abandoned later. On rare occasions, when further attempts for informa-tion were made, the researcher dealt with the question as i f i t were a statement and no response was given. In the situation described concerning management of the subjects' purposes and the subjects' questions,the researcher was aware of inequities in terms of information exchange and this would be commented upon: "I think i t has been somewhat d i f f i c u l t for you in that, you know, as we talked about the f i r s t time, I can't give you any feedback." In this way, the subjects' desires were acknowledged, and thus subjects did not appear to be resentful when their requests were not met. DATA ANALYSIS Before discussing the way in which the data was analyzed, i t seems important to state the perspective of the researcher in analyzing the accounts. These accounts were viewed as descriptions of and explanations for medication-taking, produced by competent members of this group. These accounts were not viewed as displays of psychopathology, although someone adopting this perspective might obtain data adequate to support that view. By pursuing the clients' perspectives towards their situations, The term competent i s used to mean the claim that the individual is able to manage his everyday affairs without interference (Garfinkel 1967). 50 the researcher was able to accept the accounts as how people make sense of their situation. Very rarely was the researcher faced with information that "did not make sense" in relation to the situation being described. These judgments are the. researcher' s common-sense judgments . By whose standards i s an account to be judged? If s c i e n t i f i c ideology was used as the measure of plausibility and acceptability, these accounts would be seen as inadequate. Because the participants used lay terminology and logic, science would see this logic and terminology as incorrect or inadequate. The data was transcribed and analyzed following each interview. The data was not analyzed according to categories determined by a pre-selected theory as to why clients do or do not take medications. Rather, the analysis of the data was directed towards the development of themes and concepts which had meaning for the subjects. The process of data analysis involved inferring, questioning, and modifying these themes and concepts. The data provided by the subjects directed the researcher to expand the focus of the interviews from the specific area of medication-taking to much broader areas of il l n e s s , treatment, and normality/deviance. Thus the themes tended to develop in the direction of concrete to abstract. As mentioned earlier, analysis of data pertaining to chronic versus acute illness experiences led to the selection of a second subject group. The differences and similarities of the two groups w i l l be discussed in Chapter Four. Consultation was sought from two members of the Thesis Committee, and three others familiar with qualitative research. This consultation served to stimulate conceptualization of the data in a variety of ways, and to verify the researcher's organization of the data. At the conclusion of the interviewing, segments of the accounts were sorted according to the 51 i d e n t i f i e d themes and concepts, which r e f l e c t e d both process and content aspects of the accounts. Analysis of the data w i t h i n these categories served to enrich the descriptions of, and explicate linkages amongst, the themes and concepts. Although others did make valuable contributions:to the data an a l y s i s , the f i n a l organization of the data i s both the creation and the r e s p o n s i b i l i t y of the researcher. ETHICAL CONSIDERATIONS ENCOUNTERED IN THE RESEARCH PROCESS E t h i c a l considerations have been discussed i n r e l a t i o n to p a r t i c i p a n t s e l e c t i o n : the way i n which subjects were approached and the nature of the consent forms signed. As w e l l , the project design provided for the erasure of the tapes and the shredding of the t r a n s c r i p t s upon completion of the t h e s i s . The subjects' e t h i c a l r i g h t s thus appeared to be well attended. A b r i e f summary of the research w i l l also be sent to the p a r t i -cipants . However, i n the course of conducting t h i s research, unanticipated e t h i c a l concerns arose. In the process of interviewing, the researcher became aware of the increasing commitment to and i d e n t i f i c a t i o n with the subjects, a sense of the study being " t h e i r study" as w e l l as the researcher's. This led to con-cerns about the presentation of the data i n regard to the l e v e l of inference and the p o s s i b i l i t y of d i s t o r t i o n , the decision being to present data with which the subjects could i d e n t i f y . Q u a l i t a t i v e studies vary greatly i n the l e v e l of inference to which analysis can be taken. Another aspect of t h i s commitment was an awareness that others might use the data i n ways not intended by the researcher, for example, as proof of the "ignorance" 52 or "unreliability" of the subjects. The researcher f e l t committed to present the data with sensitivity and to influence others to interpret the data "in good faith." Confidentiality issues also arose in the course of the study. How to manage information exchange concerning the study with persons other than the subject? For example, what to t e l l other persons in the home when calling concerning the study and how to respond to therapist queries as to "how did things go?" Confidentiality issues i n terms of the use of excerpts from the transcripts also became apparent. Although i t had been stated that no names or other identifying data would be used when report-ing data, the idiosyncratic nature of subjects' accounts brought into question the possibility that individuals would be identifiable from their statements alone. This risk appears unavoidable in qualitative research. The f i n a l ethical issue involves informed consent. One question which arose in the researcher's thoughts was whether the subject's family would view the subject as competent to give consent to participate — apparently the families did as this was never an issue. The other, more important question was the issue of truly informed consent. Subjects had been in-formed that this study was concerned with medication-taking, but were not informed that the study was concerned with the medication-taking of schizophrenic clients. As the researcher did not question subjects as to their diagnostic understanding, the researcher is aware of only one subject who classifies her/himself as schizophrenic. How would the other subjects react to being part of this study, or, for that matter, being diagnosed Due to the small numbers of male participants, female doctors, and male non-physician therapists involved, standardized pronouns w i l l be used in quoting from the accounts: masculine pronouns for the therapists and doctors, and feminine pronouns for the participants. This w i l l be done for purposes of confidentiality. 53 and treated as schizophrenic? This issue i s a problem for psychiatry i n general. As t h i s problem was only i d e n t i f i e d i n the course of research, and the issue i s much more general than t h i s study, no procedural changes were made. SUMMARY This chapter on methodology outlined both the procedures and the fla v o r of the q u a l i t a t i v e research process. The products of t h i s process, the subjects' accounts of the i r medication-taking behavior and th e i r explanations f o r those behaviors, w i l l be presented i n the following chapter. 54 CHAPTER IV: THE PARTICIPANTS' ACCOUNTS INTRODUCTION This chapter presents the participants' accounts of their medication-taking. It is directed towards describing schizophrenic clients' medica-tion-taking behaviors and their explanations for those behaviors within the context of their everyday l i f e . Each participant presented a unique account, although there tended to be similarities amongst certain accounts. However, whilst recognizing the unique nature of each individual's exper-ience, the researcher's purpose has been to identify themes and concepts which reflect the group's perspective. The five major content areas discussed in this chapter are medication-taking practises, current perspectives towards medication-taking, the context of medication-taking, the moral implications of medication-taking, and the influence of others on medication-taking. The organization of these content areas represents a progression from the specific aspects of medication-taking, the everyday patterns of medication-taking and variations of these patterns, to more general aspects of the subjects' experiences related to medication-taking, such as their illness and treat-ment experiences. Chapter Three described two separate client groups, a short-term and a long-term group, which participated i n the study. Ih some parts of this discussion, these groups were taken as one; at other times, compari-sons were made. The reader i s advised to assume unity in these two groups unless directed otherwise. 55 MEDICATION-TAKING PRACTISES A. Everyday Practises The interview discussions of medication-taking pra c t i s e s began with a de s c r i p t i o n of what might be c a l l e d the everyday pattern of medication-taking, a t y p i c a l day. Emerging from these discussions were the prac t i s e s developed by pa r t i c i p a n t s for taking medication on an everyday basis, as well as the problems and decisions encountered. Generally, p a r t i c i p a n t s indicated that the actual taking of medica-t i o n was not a great interference i n t h e i r everyday l i f e . R: I had asked you before about taking i t three times a day, and, um, I wonder how does that f i t i n to your sort of everyday a c t i v i t i e s ? S: Very simple. As might be expected, the less frequently medications were to be taken during the day, the less interference was expressed by the p a r t i c i p a n t s . A l l p a r t i c i p a n t s established schedules but varied as to the r i g i d i t y of these schedules. Schedules might be based on s p e c i f i c times of the day or rel a t e d to p a r t i c u l a r points i n the routine such as "before bed" or "as soon as I get up i n the morning." The way i n which medication was prescribed contributed to these d i f f e r e n c e s . Medications prescribed once, twice, or three times d a i l y , for example, gave p a r t i c i p a n t s l a t i t u d e i n adjusting the p i l l - t a k i n g to t h e i r own d a i l y schedules. S: It j u s t said twice a day, you can take them i n the morning, or at suppertime, or lunchtime, or at suppertime, or when-ever I guess. Some pa r t i c i p a n t s based t h e i r medication-taking schedule on hos p i t a l p r a c t i s e s . R: How did you come to decide on those times? S: Well they were the times given to me i n the h o s p i t a l . 56 Others used their own judgment for the decision: R: How did you decide on that, on those particular times of the day to take the medication? S: I didn't know — I just tried i t out and i t seemed to work out so — . One participant based her decision to take the two daily doses within three hours of one another because "they're always on my mind, maybe that's what i t i s , i f I don't do i t , you know, get i t over with." Changes in the daily pattern caused changes in medication-taking: sleeping in unt i l noon may cause a morning dose to be missed i f the participant also takes a noon dose, or a p i l l seen as.helpful to sleeping may be taken in the afternoon i f the participant missed the previous evening dose and feels tired. The scheduling is influenced by participants' notions of how frequently medications may be and should be taken. Many participants mentioned that i t was best to have medications "well spaced out during the day." One participant calculated the times to take medication by dividing the waking day by the number of doses in order to space doses evenly. Another parti-cipant attributed her notion of "no more than every four hours" to the doctor's advice. Several participants mentioned that longer spaces of time than usual between medications, or even forgetting doses, were not c r i t i c a l because the medications are "long range ones.;" Concerns about sufficient space between dosages prohibited some participants from taking medications too close together, feeling i t .was preferable- to missi.a dose rather than risk "an overdosage:." One participant stated, " I ' l l take less but I ' l l never take more-,-" and reflected that this practise was related to being pleased about taking less as well as concerns about "overdosage.11. Those participants who took medication at bedtime had variations in 57 p r a c t i s e . Some pa r t i c i p a n t s expressed not taking medication at bedtime i f they should go to bed too l a t e , to avoid drowsiness i n the morning. There was also the problem of f a l l i n g asleep without taking the medication and whether to get up and take the p i l l i f one wakes up during the night. S: I ' l l be l y i n g , and i t ' l l be around 9 or 10 o'clock, and I ' l l go to bed and watch t e l e v i s i o n . R: Uh-hmm. S: And i t ' s too early to take i t , and so therefore I sleep. Now when I was r e a l l y s i c k , I would wake up at 2 o'clock, and take t h i s medication, because they had stressed t h i s whole thing, 'you must take your medication'.' R: Uh-huh. S: And then I was awake a l l the re s t of the night. .So I decided that my sleep was more important than taking the p i l l . One pa r t i c i p a n t expressed l i k i n g to take the p i l l well i n advance of bed-time . S: Before I f a l l asleep, I don't want to f a l l asleep doped up, I want to f e e l the e f f e c t of i t and a l l the e f f e c t of i t before I f a l l asleep. And i f I get the p i l l s reduced, I'm not l y i n g there while they're reducing, while I'm slowly going down, but I'm already f e e l i n g the e f f e c t of the reduction, you know, the — a f t e r I take them, before I go to bed. The decision of whether or not to take medications when out i n public w i l l be discussed i n regards to the moral implications and information management. Many p a r t i c i p a n t s did take medications with them and some had sp e c i a l p i l l containers or medicine b o t t l e s for that purpose. One p a r t i c i -pant expressed "never going out of the house without my p i l l s . " Many women were i n the habit of keeping the medications i n t h e i r purse which then assured that they had access to the p i l l s wherever they were. However, for some p a r t i c i p a n t s , unexpected or longer-than-expected outings were a source of v a r i a t i o n i n the regular medication-taking pattern, r e s u l t i n g i n 58 delayed or missed doses. Again, the extended action of the medication was seen to minimize the problems of such an occurrence — "doesn't r e a l l y matter, l i k e i t does not a f f e c t that much:", Holidays were planned i n advance to ensure an adequate supply of medication. In conjunction with notions about when medications should be taken, notions about how medication should be taken were described. Variations existed i n whether medications should be taken with meals, and, i f so, before or a f t e r ; and whether medication should be taken with a l i q u i d , and i f so, any p a r t i c u l a r l i q u i d . Some par t i c i p a n t s f e l t that these questions were immaterial and took the p i l l s i n a v a r i e t y of ways, including completely alone. However, other p a r t i c i p a n t s had fi x e d patterns, sometimes based on ho s p i t a l experience. S: Go for breakfast, and r i g h t a f t e r you go for breakfast, you had to take your medication. S i m i l a r l y at the lunchtime, you j u s t go for the lunch and then a f t e r the lunch, there was medication. So I ju s t had an idea, from there, that i t has to be taken a f t e r the meal, r i g h t , so I t r i e d to, t r i e d to space i t out by that, so I could take i t with my meal. S: I usually take them a f t e r I've eaten. R: Uh-huh. S: I don't know, I've never been t o l d whether i t was important or not, I usually have breakfast and then take a p i l l . R: You had mentioned something, you know, about the way that you usually take medication and that was about, uh — S: Taking them af t e r meals. R: Right, taking i t a f t e r meals. That you had found that i f you took medication on an empty stomach, that — S: It made me f e e l a l i t t l e b i t nauseated. Uh, I, i t , not as good as taking i t a f t e r anyway. Uh, I suppose g a s t r i c j u i c e s work, reacting with something. 59 Medications were taken with water, o v a l t i n e , milk, and j u i c e s . Again, some p a r t i c i p a n t s were more fixed i n t h e i r p r a c t i s e than others. These practises had also developed from a v a r i e t y of sources. S: I usually take i t with a half a cup of o v a l t i n e . R: Uh-huh. S: I think I've heard that p i l l s are better for you i f you take them with something with a b i t of milk i n them; i t l i n e s your stomach. S: Well, w e l l , I t o l d you to take them with water, didn't I? Not to take them j u s t by swallowing. R: Uh-huh. S: I t seems to have a better e f f e c t on you i f you take them with some l i q u i d . S: Like while at the h o s p i t a l , I was given medication with pineapple j u i c e . R: Uh-huh. S: And when I j u s t got home, the f i r s t week or two, I r e a l l y did the same thing, l i k e I j u s t went and bought the pine-apple j u i c e and I thought that's the only thing, was to take medication with, r i g h t . R: Uh-huh. S: But a f t e r that, then I thought, you know, i t has j u i c e , i t can be any j u i c e , i t can be orange j u i c e or pineapple j u i c e , or any other j u i c e , so I stuck to orange juice,from there on. R: Uh-hmm. S: And I've t r i e d taking i t by the water, too. With, with the water, and i t doesn't, i t doesn't r e a l l y make much dif f e r e n c e , but with the water I guess i t was, I found i t was a f f e c t i n g me more. Like when I took i t with the water, but then I've been stuck, I've stuck to the orange j u i c e . I j u s t take my medication with orange j u i c e , Tang. Thus f a r , everyday medication-taking p r a c t i s e s have been discussed, as well as some of the circumstances which a r i s e to a l t e r these everyday 60 practises . Other sources of v a r i a t i o n to these practises w i l l now be d i s -cussed . B. Variations i n Everyday Practises 1. Remembering and Forgetting Some p a r t i c i p a n t s stated they never forgot — "I always remember, because I'm on a schedule." However, most p a r t i c i p a n t s stated that they sometimes forgot the medication — "I forget occasionally, but I usually do i t as a matter of habit." The terms used, such as "a habit," "a system," and "a schedule," convey the in t e g r a t i o n of the medication-taking within the p a r t i c i p a n t s ' d a i l y l i v e s . One p a r t i c i p a n t stated that she frequently did not take one newly prescribed medication (which was not an a n t i -psychotic medication) because she's "not i n the system of i t " : S: Well, I've had trouble. It's a new kind of medication and I'm not i n the system of i t , and so, I hardly ever remember to take i t . The p i l l s that were missed were often the mid-day doses. Some par t i c i p a n t s used memory aids, such as placing the day's supply of p i l l s i n a separate place so that i t could be determined how many had been taken, or the use of a sign to remind the p a r t i c i p a n t . One p a r t i c i p a n t ' s spouse took an acti v e r o l e by administering two of the three d a i l y doses of the medication. The p a r t i c i p a n t s ' responses to f o r g e t t i n g doses varied depending on when they became aware that they had forgotten as well as b e l i e f s about spacing medications, over-dosage, and the medication's length of action which have been discussed. 2. Deliberate Variations Forgetting was described by pa r t i c i p a n t s as an unintentional change i n the medication-taking pattern. Deliberate v a r i a t i o n s were also described. 61 In f a c t , one such v a r i a t i o n was c a l l e d "forgetting,'." but was d i f f e r e n t i a t e d from " r e a l l y f o r g e t t i n g . " This f o r g e t t i n g was described as not making an e f f o r t to remember due to less commitment to medication-taking. R: In the past when you had d i f f i c u l t y remembering about the p i l l s ? S: I didn't want to take them. R: I see. S: And that's what made me forget about them. Other forms of delibe r a t e v a r i a t i o n are reducing the d a i l y dose. S: Oh wel l , I j u s t , i f I f e e l I don't need something, I'm cutting down on i t . R: Uh-hmm. S: You know, l i k e that one that says "take three times a day." I only take them twice a day because I, unless I r e a l l y f e e l I need them three times, then I ' l l take the t h i r d one. Otherwise I'm only taking two of those instead of three. And I'm doing a l l r i g h t . This p a r t i c i p a n t and others re l a t e d t h e i r need for medication to the amount of stress which they were experiencing. They emphasized the importance of taking medication as prescribed during these s t r e s s f u l times. S: Well, I can't take a l o t of excitement. R: Uh-hmm. S: Like at Christmas time, or that. I can't take a l o t of excitement. That's another thing. R: So, when that happens, what do you do then? S: Well, I ju s t make sure I take my p i l l s as prescribed around that time, that I don't cut any out. Other circumstances necess i t a t i n g d e l i b e r a t e changes i n medication-taking were physical sickness such as the f l u and consumption of alc o h o l . Some par t i c i p a n t s stated that they continued to take medications regard-less of thei r p h y s i c a l health; others stopped medications due to physical 62 problems. S: I had the f l u and I couldn't even keep water down. I didn't take any p r e s c r i p t i o n s . S: If you had the f l u , say, and you're throwing up, and you're i l l , and you have to stay i n bed, i t ' s bad to take the p i l l s . S: I didn't take the p i l l l a s t night and I'm t i r e d today. I didn't take i t because I had a bad taste i n my mouth and I thought the p i l l wouldn't digest. Several p a r t i c i p a n t s mentioned that the medications were either affected by or not to be taken with a l c o h o l . Their response to t h i s know-ledge was to not drink alcohol at a l l , to drink alcohol with what they con-sidered to be due caution, or to miss t h e i r medication. S: I can't have alcohol, any a l c o h o l i c beverages. R: So, i f you ever have a drink, how do you manage that with the medications? S: I just don't take medications. I might have a glass of wine or something, and s t i l l take the medication. R: Uh-hmm. S: But hard l i q u o r , I'm not supposed to have at a l l , because of the medication. R: So i f you ever have a glass of hard l i q u o r , then you — ? S: I don't take the medication. Other deliberate v a r i a t i o n s were " t e s t " experiences, where one or several doses of medication were missed to assess the e f f e c t s . These " t e s t " experiences were d i f f e r e n t i a t e d from medication stoppages as the i n t e n t i o n was to continue on medications following the t e s t . Similar, but of a more impulsive nature, were s i t u a t i o n s i n which a dose may be thrown away i n anger, but medications resumed again. 63 S: I think once I did, a long, long time ago, .I.forgot to take one p i l l . R: Uh-hmm. S: Oh no, that's not true, actually, I flushed that p i l l down the t o i l e t , because I didn't want to take i t . S: I think one day I went without anything, for one whole day. R: Uh-huh. S: And I got through the day. I just wanted to see i f I could do i t . But I wouldn't be able to do i t for any length of time, I don't think. Some participants had also stopped their medications in the past — a l l participants expressed that they were currently taking medications. This discussion of medication-taking practises has considered every-day patterns and variations to these patterns. There were some practise guidelines mentioned in addition to these which should be included. These practises w i l l be discussed under the general heading of safety precautions. C. Safety Precautions Participants mentioned an assortment of practises which can be i n -cluded in this category. The dangers of having excess medication around because of children were mentioned (as well as the relative f u t i l i t y of the safety container as the participant could not open i t , but the child could). One participant stressed the importance of informing the family doctor and "the c l i n i c " of one another's actions in regards to medication; another mentioned not taking p i l l s which dropped on the floor. Several participants mentioned the dangers of "pill-popping" which appeared to be taking more medication than prescribed or unprescribed med-ication. For example, such practises as taking other persons' medications or combining excess medication and alcohol were mentioned disparagingly 64 as " p i l l - p o p p i n g . " Si But that's, that's p i l l - p o p p i n g , you know. R: Ya? S: Pi l l - p o p p i n g , and that's no good for anybody. They, they want — they think, they can get a high on, high on some-body else's p i l l s , so t h e y ' l l trade p i l l s , or something l i k e that, you know, which i s n ' t good for them. As mentioned previously i n regards to scheduling p r a c t i s e s , p a r t i c i p a n t s were concerned about the e f f e c t s of too much medication — "I never take more. That's a no-no." One p a r t i c i p a n t stated that taking the d a i l y dose of f o u r . p i l l s at one time, instead of throughout the day "may ju s t r u i n the uh, the idea of taking medications, you know." "Over-use" was a concern as w e l l . This notion implied being on the same medication for too long a period of time. Both " a f t e r - e f f e c t s " from over-use and loss of effectiveness of the medication were mentioned as complications of t h i s p r a c t i s e . Thus some pa r t i c i p a n t s f e l t medications should be changed p e r i o d i c a l l y . D. Prescribed Medication Changes To t h i s point, t h i s section on medication-taking pra c t i s e s has de-scribed the v a r i a t i o n s i n medication-taking which p a r t i c i p a n t s i n i t i a t e d , although these may be based on knowledge and suggestions from others. In addition to these s e l f - i n i t i a t e d v a r i a t i o n s , several p a r t i c i p a n t s exper-ienced prescribed medication changes i n the course of the study, changes which gave r i s e to v a r i a t i o n s i n t h e i r medication schedules and hence the i r everyday l i v e s . Prescribed medication changes w i l l be further d i s -cussed i n the sections of t h i s thesis describing the p a r t i c i p a n t s ' past experiences with medication; the p a r t i c i p a n t s ' understanding, and lack of understanding, of the reasons for the changes; and the therapist-patient 65 r e l a t i o n s h i p . Although the pa r t i c i p a n t s expressed uncertainty as to the the r a p i s t s ' reasons for the changes, t h e i r own active sense making and evaluation of the changes was evident i n t h e i r discussion. CURRENT PERSPECTIVES TOWARDS MEDICATION-TAKING The p a r t i c i p a n t s 1 current ideas about medications and medication-taking w i l l be presented. These ideas are organized under three general headings: the p a r t i c i p a n t s ' notions about medications, the reasons why part i c i p a n t s need medication, and expectations concerning medication-taking. A. The P a r t i c i p a n t s ' Notions About Medications The p a r t i c i p a n t s ' conceptions or notions about medications themselves w i l l be discussed. The contributing sources or or i g i n s of these under-standings are other persons isuch as therapists, fellow patients, and fam-i l i e s ; t h e i r own observations of such things as h o s p i t a l p r a c t i s e s ; and th e i r own sense making. These notions are not s t a t i c as learning about medications i s an on-going process. When i n i t i a t i n g discussion concerning medication-taking, the researcher asked the pa r t i c i p a n t s what medications they were currently taking. The majority of the pa r t i c i p a n t s could not answer t h i s question and sought out their p i l l s which they gave to the researcher to check the name. The.pro-n u n c i a t i o n of the names appeared a major d i f f i c u l t y i n t h e i r communica-ti o n concerning the medication. S: I t ' s j u s t up here — I can never pronounce i t . S: The names are so hard to pronounce. R: Ya. S: I couldn't begin to s p e l l them, l e t alone pronounce them. 66 Once the researcher pronounced the name, some p a r t i c i p a n t s would attempt to use the names. S: Two " t r i f l u o z i n e " i n the morning and one — Benz — what do you c a l l i t ? R: Benztropine. This p a r t i c i p a n t immediately switched to using the colors rather than the names, which was often the way that others i d e n t i f i e d the p i l l s . Some par-t i c i p a n t s were of the understanding that the dosage number indicated the strength of the medication, regardless of type of medication, thus Chlorpromazine 25 mgm. would be a greater dose than T r i f l u o p e r a z i n e 20 mgm. As w e l l , some pa r t i c i p a n t s used the notion of "a heavy" t r a n q u i l i z e r , which was considered a strong t r a n q u i l i z e r . The general understanding of the medications were that they were " t r a n q u i l i z e r s " '.'to calm you down.", Pa r t i c i p a n t s were asked about t h e i r notions of how the medication works. Some stated that, although they had thought about i t , they could not explain i t . Others were able to give explanations: " i t controls your thought patterns, i t uh helps you think things slowly and uh helps you"; "slowed me down — you have to do a l l the work, i t ju s t does the chemical balance that, that you have to work with"; "my brain gets rested"; and " i t ' s f o r my mind — so I won't get, s t a r t f e e l i n g , um, what do you c a l l i t — suspicious and a l l that." These understandings are rel a t e d to the i n d i v i d u a l s ' understandings of the i r i l l n e s s and t h e i r reasons for taking medication. Some pa r t i c i p a n t s discussed the s p e c i f i c actions of the d i f f e r e n t medications. S: And what i s affected i s your hemioglands, the color, the color glands, by chlorpromazine, and your s k i n turns brown or purple. R: Uh-hmm. 67 S: And there's women and men out there — mostly women — with t h e i r purple and brown ski n because people didn't know that. S: Well, uh, each p i l l , no matter what i t i s , i t ' s to correct some, something or other. R: Uh-hmm. S: And, each p i l l i s for a d i f f e r e n t reason, I guess, or maybe there's two or three kinds by d i f f e r e n t companies with the same purpose more or l e s s . Each company would c a l l t h e i r p i l l a d i f f e r e n t name, I guess, but maybe i t ' s more or l e s s supposed to do the same thing. I don't know — . Oh, to calm you down. S: Somebody's t o l d me once about h a l o p e r i d o l , I'm not sure I remember r e a l l y , i t ' s f o r psychosis. I t ' s for s o c i a l withdrawal, i t ' s for tension, i t ' s for eh, I don't know. Anyway, I'm not worried about a l l that — I don't know, I jus t take i t as a t r a n q u i l i z e r . Another p a r t i c i p a n t described what i t was l i k e to be on medication: S: But when, when you're taking p i l l s l i k e t h i s , even though they're a f f e c t i n g more than any drinks you can have. R: Uh-huh. S: But you don't f e e l i t that way, you do not go out of uh, out of your c i r c l e , to f e e l the medication. The medication i s always, already j u s t there. Certain features of the medication, namely side e f f e c t s , addictions and withdrawals were frequently mentioned. 1. Side Effects P a r t i c i p a n t s were f a m i l i a r with the term "side e f f e c t s " although some could not r e l a t e any s p e c i f i c side e f f e c t s . They used the term spon-taneously i n the interviews. P a r t i c i p a n t s discussed the side e f f e c t s which they were currently experiencing, tiredness being the most common. Some partici p a n t s expressed having no side e f f e c t s . The importance of the side e f f e c t to that person, including the way i n which the side e f f e e t ' i n f l u e n c e s 68 the person's l i f e , were important aspects i n understanding the s i g n i f i c a n c e of side e f f e c t s . R: What would your, your preference be, , how would you l i k e to see i t ? S: Well, I think I'd l i k e to go back on two again, because, uh, I don't know, i t ' s not as r e s t r i c t i n g , uh, uh, being able to do things, you know, I mean four makes me very t i r e d . S: Like even r i g h t now I'm getting a l i t t l e b i t of dry mouth. R: Uh-huh. S: And uh, about two weeks before i t was a l o t more d r i e r , l i k e I couldn't t a l k at a l l , i f I was t a l k i n g to any stranger, for f i v e - t e n minutes, i t would get so that I couldn't even speak anymore words. The p a r t i c i p a n t s ' d i f f i c u l t i e s i n determining what physical phenomena are associated with the medication, thus might be considered side e f f e c t s , were evident i n t h e i r comments. S: Well, I do get side e f f e c t s . R: I see. So, could you t e l l me about those, the side e f f e c t s . S: Well, I s t a r t , I don't know i f they're side e f f e c t s , but I think they are. R: Uh-hmm. S: Like I have pains i n my side and that. S: Oh, I've been n o t i c i n g that I'm getting cramps, pains, and everything, i n my back and my legs. I'm wondering, perhaps, i f that's something to do with medications, I don't know. S: Maybe the doctor was concerned, although he said he didn't think that they (the medication) were to blame for the nose-As mentioned previously, masculine pronouns w i l l be used for therapists and doctors, and feminine pronouns w i l l be used for p a r t i c i p a n t s . 69 bleeds. And now that I've been on the new p i l l s for awhile with no nosebleeds, i t looks l i k e i t d e f i n i t e l y must be the p i l l s . Although the nosebleeds are not great hardship, i t ' s d e f i n i t e l y something that shouldn't be. Yes, i t ' s d e f i n i t e l y something that should be — maybe they don't agree with my body or something. 2. Addiction and Withdrawal. Some pa r t i c i p a n t s expressed the notions of becoming, or fear of becom-ing, addicted to the medication, as well as the b e l i e f that when stopping the medication, they would experience withdrawal. Addiction was r e l a t e d to the length of time one was on the medication, that i s , the longer on the drug, the greater the chance of addiction. Addiction was also described i n the way of a dependency or a need for the drug. R: Can you t e l l me about that, when you say the medication i s a d d i c t i v e , how i s i t addictive? S: Well, you don't f e e l r i g h t without i t . R: Uh-huh. S: You don't feel...you've got used to the drug. Withdrawal appeared to be an adjustment process to being without medication. S: Each p i l l has a d i f f e r e n t withdrawal, l i k e with Stelazine, i t leaves me slow. R: Uh-hmm. S: Like without energy, l i k e I don't f e e l l i k e t a l k i n g , and um, and I don't f e e l l i k e um, I have strength to t a l k . I think I have to r e s t u n t i l I get over the withdrawal period. B. The Reasons Why The P a r t i c i p a n t s Need Medication The reasons why the p a r t i c i p a n t s took and/or needed medication were explored. Ambivalence and uncertainty towards medication-taking was a theme i n these discussions. P a r t i c i p a n t s presented these f e e l i n g s despite a r t i c u l a t i n g reasons for medication taking. 70 S: I don't know for how much longer I ' l l be needing my (medication) — i f uh, I'm, I don't know, unstable i s the r i g h t word for i t . I can't t e l l whether I r e a l l y need i t , or whether I could do without i t . R: How long, how, how long ago was that, that change took place? S: Well, I guess I could say when I started doing i t , when I started taking them, even though I talked about i t and didn't l i k e to take them, I guess, ten years ago. But when I became more p o s i t i v e myself, sometimes I s t i l l doubt i t . S: I mean the reason I've been taking i t r e g u l a r l y . R: Right. S: Is because I'm not confident of what w i l l happen i f I did not take the medicine. Some pa r t i c i p a n t s expressed strong commitment towards taking t h e i r medications. However, i t appeared they too had some f e e l i n g s of ambiva-lence and uncertainty, as displayed by what have been described as t e s t -ing behaviors, such as stopping medications for short periods of time or missing doses on occasion. The reasons why the p a r t i c i p a n t s f e l t they took and/or needed medica-t i o n were grouped into f i v e categories: p h y s i o l o g i c a l reasons; the symptoms i n r e l a t i o n to past or present sickness; the avoidance of past treatment experiences; the influence of others; and support and dependency. Pa r t i c i p a n t s stated reasons i n more than one category. 1. Physiological Reasons These explanations re l a t e d the p a r t i c i p a n t s ' sickness and t h e i r need for medication to an organic condition: t h e i r "system working with the p i l l s " ; t h e i r "body chemistry"; or "a chemical missing i n the system." Several invoked the analogy of a d i a b e t i c needing i n s u l i n . 71 S: I know I need them (the medications), j u s t l i k e a d i a b e t i c would need i n s u l i n . 2. The 'Symptom' Approach Reasons for taking medication were predominantly i n t h i s category. The researcher chose the word "symptom" to s i g n i f y those reasons for taking medication r e l a t e d to the p a r t i c i p a n t s ' descriptions of the i l l n e s s or features of the i l l n e s s . These descriptions could be loosely placed on two dimensions, past and present, and p o s i t i v e and negative. The past dimension describes those reasons which r e l a t e to past experiences without medication and the p a r t i c i -pants' taking medication to avoid "being s i c k again." The present dimension characterizes those reasons re l a t e d to current action of the medication, "slowed down,'"-"more content,"> "not so j i t t e r y , " etc. The medication i s seen as a c t i v e l y i n f l u e n c i n g the present, not j u s t preventing the past. The p o s i t i v e and negative dimensions of these explanations character-ized whether the medication promotes health, "function b e t t e r " and "be more myself," the p o s i t i v e approach, or counteracts the features of the i l l n e s s , the negative approach. Examples of reasons f o r medication-taking with the negative dimension are "helping with voices," preventing "symbol-ism,") and "so I don't smash my brains against the w a l l . " The majority of the reasons given could be characterized as "present" and "negative." S: It (the medication) seems to be doing what i t ' s supposed to do. I'm calmer, not l o s i n g my temper, not crying, not depressed. S: The only thing i t does i s slow me down. It ' s uh, t r a n q u i l -i z e r . And I'm over-active, the doctor says. So, i t j u s t needs a l i t t l e , a l i t t l e b i t , two p i l l s a day, j u s t to keep me sort-of on a l e v e l k e e l . 72 R: But there's something that you want to get out of that p i l l , and that's what I was t r y i n g to, uh, f i n d out. S: Well, as long as I don't go, don't go "foot i n the a i r " and I sleep at night. Uh, I'm hoping that, uh, I've been bothered by voices from time to time and I'm hoping that i t ' l l , i t ' l l a l l clear up and uh, that I can stay h e a l t h i e r and get he a l t h i e r and that sort of thing. P a r t i c i p a n t s sometimes d i f f e r e n t i a t e d why they needed c e r t a i n medica-tions . R: Can you t e l l me a b i t about that, l i k e why you think Chlorpromazine has been the best? S: Well, I, I sleep r i g h t through the whole night, when I take one, and also I'm much more calmer during the day. R: Uh-hmm. S: I think i t ' s the one that keeps me calm, better than any of the others. S: Um, the t r i f l u o p e r a z i n e , or s t e l a z i n e , i t , i t gives me a pick up, energizes me. 3. Avoidance of Past Treatment Avoidance of h o s p i t a l i z a t i o n , as opposed to avoidance of i l l n e s s which was described i n the previous category, the symptom approach, was a power-f u l influence on some p a r t i c i p a n t s ' medication-taking. S: And uh,, they (medication) don't s t r i k e me that much, so I f e e l that, you know, I don't need any more medication. But even though, I j u s t carry, carry through with i t , because uh, I don't want to go back to the h o s p i t a l again, r i g h t . R: Can you see other ways that the medication has helped you? S: Well, i t ' s kept me out of h o s p i t a l , l i k e I haven't uh, I mean maybe i t ' s j u s t a coincidence,! but when I was on four a day, I never went i n to the h o s p i t a l . R: Uh-hmm. S: And I would do anything to stay out of h o s p i t a l because that's, you know, a t e r r i f y i n g experience. 73 The d i f f i c u l t y i n d i f f e r e n t i a t i n g between avoidance of past treatment and the prevention of i l l n e s s i s c l e a r l y shown i n the following p a r t i c i -pant's explanation. R: You had mentioned that the doctor used the expression — S: 'Going back to the h o s p i t a l . ' R: 'Going back to the h o s p i t a l ' — that had been kind of the reason for taking the medication, eh? S: It's the reason I take i t r e g u l a r l y . That I don't want to get s i c k again and I don't want to go back to the h o s p i t a l . R: Right, ya, you had said that, he, you f e l t that he used that expression, going back to the h o s p i t a l to describe — S: Ya, getting s i c k , getting sick again. Hence, t h i s category may be interpreted i n two ways. F i r s t l y , i t may be a category expressing avoidance of treatment as a reason for taking med-i c a t i o n , or secondly, t h i s category may not exi s t as avoidance of t r e a t -ment may be ,another way of expressing t h e i r wish to avoid i l l n e s s . 4. The Influence of Others Some p a r t i c i p a n t s , who also stated other reasons for being on medica-t i o n , placed great emphasis on the r o l e of others, e s p e c i a l l y t h e i r doctor/ therapist, i n t h e i r medication-taking. Ambivalence and uncertainty were mentioned as features of the p a r t i c i p a n t s ' accounts of t h e i r reasons for taking medication. The r o l e of the doctor/therapist appeared to be r e l a t e d to these themes: the involvement of another, who can be seen as an authority, i n the closure of a very d i f f i c u l t d e c i s i o n . R: If you weren't seeing (therapist) would you? S: No, I don't think I'd be on the p i l l s now. R: So now you're f e e l i n g you're ready to be off of i t (medica-tion) again? 74 S Yes. R Is that what you mean? S Uh-hmm. R Urn — so, um, would you stop i t again now then? S No, I wouldn' t stop them u n t i l the doctor says. 5. Support and Dependency The themes, ambivalence and uncertainty, are linked with t h i s f i n a l category, support and dependency. In the face of uncertainty, the p a r t i c i -pants have come to' r e l y on the medications. S: Well, i f I wasn't taking medication, I'd f e e l not secure. S: I have i t i n my mind i f I take a p i l l , I ' l l be better. R: Uh-huh. S: So, um, l i k e I take, don't take a p i l l i n the morning, and then go out, I'm r e a l l y shaky u n t i l I've taken my p i l l . R: Uh-huh. S: Because I think i t ' s j u s t a psychological thing that I have to have a p i l l . In concluding the reasons why p a r t i c i p a n t s f e e l they need and take medication, i t i s emphasized that a l l of the reasons mentioned are enhanced by an understanding of the c l i e n t s ' perspective of t h e i r i l l n e s s and/or treatment, which w i l l be discussed l a t e r . C. The P a r t i c i p a n t s ' Expectations Concerning Medication Taking P a r t i c i p a n t s ' expectations concerning medication-taking could also be categorized; three categories were developed and w i l l be described s h o r t l y . As i n the reasons for medication-taking, themes were apparent, regardless of the category (or categories) of expectation. One theme, which can be 75 considered s i m i l a r to the ambivalence and uncertainty expressed i n the pre-vious section, was concern about "how things would go" i f they were to be off medication. Would they have to go back on them? S: Well, I f e e l I can come o f f them, and ju s t forget about i t , but uh, would worries p i l e up on me, and — R: Uh-hmm. S: Would I be back on the p i l l s again? Like I'd l i k e to get o f f them and never have to touch the p i l l s again. S: Oh, I've been taking i t for so long — uh -- I don't know i f I could ever get r i g h t o ff them. R: Uh-hmm. S: I might get off them for a short time, but I think I'd probably end up back on them again. R: Do you a n t i c i p a t e i n the future ever having to go back on them again, or what do you think about that? S: Yes, I've always wondered i f I'd have to go back on them af t e r I've f i n i s h e d taking them. A second theme was that they would l i k e to be off the medication. Even those who accepted medications "for l i f e " expressed the d e s i r a b i l i t y of being o f f medication i f i t were possi b l e . Congruent with t h i s theme is the notion that a medication reduction i s s i g n i f i c a n t of progress; medication reductions were seen as good. R: What makes you wonder i f you need i t ? S: Because I want to get off them. R: Uh-hmm. S: I don't want to have uh any more p i l l s . S: If you can do without them, i t ' s better to be without them. 76 The t h i r d theme was that expectations for medication-taking were considered i n conjunction with other aspects of the i n d i v i d u a l ' s l i f e plan. That i s , the pa r t i c i p a n t s considered other aspects of the i r l i f e s i t u a t i o n i n determining the need f o r medication. The following comment i l l u s t r a t e s both the wish to be o f f medication and the consideration of other l i f e events. R: So some people equate progress with medication? S: Ya, without taking i t . R: Do you, how do you f e e l , say, when the medication's reduced, do you, do you l i k e that, do you f e e l that's kind of progress? S: Ya, ya, I, I think that, you know, that's great, and I think that's not only the medication that, mind you, maybe that could be, but I think things happen to me i n my l i f e . Some pa r t i c i p a n t s expressed d i f f e r e n t expectations at d i f f e r e n t times, i n t h e i r e f f o r t s to sort out the place of medications i n t h e i r l i v e s . The three categories of expectations represent d i f f e r e n t points i n the 'on me d i c a t i o n — o f f medication' continuum: expect to be on them for l i f e ; maybe c o u l d / w i l l come o f f sometime i n the future; and expect- to be o f f medication i n the near future. 1. Expect- to be on them for l i f e Although t h i s expectation involves medication-taking f o r l i f e , p a r t i c i -pants expressed goals for medication-taking i n the form of reductions and going o ff them on occasion etc., i n d i c a t i n g t h e i r d e s i r e to be on as l i t t l e medication as possible. S: I'd l i k e to cut out one set, l i k e i n the afternoon, gradually cut down. I ' l l probably have to take them the res t of my l i f e , they t e l l me. S: But I don't think I ' l l ever be able to go o f f them a l t o -gether, but I think I could cut the dosage down. 77 2. Maybe could come off medication This expectation was very much associated with a future l i f e s i t u a -t i o n which would be conducive to t h e i r ceasing medication, perhaps, as stated by one p a r t i c i p a n t , "a r e l i g i o u s miracle." Medication-taking at present was accepted. R: What would you l i k e to see happen as a r e s u l t of your being on medication? S: Well, I wish I could get straightened out and be able to cope f i n e again. And to be taken o ff the meds — f e e l f i n e — I think that's a long time i n the future — I can f e e l l i k e a human being, even without taking p i l l s , you know, without getting upset, being able to cope. S: So I think I s t i l l need the medication. But once I'm emotionally happy, and I'm there, I think I can t r y again and just do without. R: What about being on no medication, whatsoever, what, what would you think about that idea? S: I t ' s been a long time since I've been on no medication, you know. R: Uh-huh. S: I t would mean that I'd have to have a well-organized l i f e , you know, and follow a pattern everyday. S: And uh, maybe, maybe one day I ' l l be, you know, w e l l enough that I ' l l not have any; but i t doesn't, I don't even think about i t , I don't even question i t . 3. Expect to be off medication in the near future These p a r t i c i p a n t s questioned t h e i r need of medication more strongly than .the previous categories and expressed some expectation of the medica-t i o n being stopped soon. As these expectations of medication stoppages were often based, on t h e i r expectations of the doctors' p r e s c r i b i n g 78 actions, the influences of the doctors/therapists were apparent i n th e i r reasons for taking medication. S: Taking medication now and a month ago, I ju s t f e e l the same way about i t . Every time I take medication, I f e e l t h a t ' l l be the l a s t two weeks now, eh. R: Ya. S: But then, the doctor reduces i t down a l i t t l e more, and gives i t to me the same, uh, less dosage, but uh, I have to keep on with the medication again. S: And, uh, through the years, they're cutt i n g me down, you know, too. R: Uh-hmm. S: Hoping I ' l l be able to go off them i n a few months. R: What are your expectations now i n regards to the medication? S: Well, I have to take them now. R: Uh-huh. S: For a l i t t l e while longer. R: Uh-hmm. S: And then t h e y ' l l decrease i t , and then every time they'11 keep lowering i t , and then I ' l l f i n a l l y go o f f . Both of the "short-term" p a r t i c i p a n t s expressed expectations only i n t h i s l a t e r category; both expected to be off medication i n the near future. Thus t h e i r expectations appeared to be more i n common with an acute i l l n e s s paradigm — sickness, treatment, cure, restored health — than a chronic i l l n e s s paradigm i n which management i s a long-term issue. It was t h i s perspective towards medication-taking that d i f f e r e n t i a t e d the "short-term" p a r t i c i p a n t i n the f i r s t group of interviews and led the researcher to seek out other such p a r t i c i p a n t s for the study. 79 THE CONTEXT OF MEDICATION-TAKING Pa r t i c i p a n t s presented t h e i r descriptions of present medication-taking within an h i s t o r i c a l context, i n f e r r i n g that medication-taking cannot be understood as an i s o l a t e d a c t i o n . Thus, p a r t i c i p a n t s would state: S: So — but to t e l l you about my medication. I started, I started on medication when I was 16. R: Did anything come to your mind i n terms of taking medica-t i o n , what i t was l i k e for you to take medication? S: To take medication i s not bad. R: Uh-huh. S: Like uh, I think of improving r i g h t from the day I started with the Team. As demonstrated by these examples, the h i s t o r i c a l introduction would occasionally be accompanied by an evaluative statement as to whether being on medication was "good" or "bad.'"^ Past and present experience, s p e c i f i -c a l l y i n r e l a t i o n to i l l n e s s and treatment, was presented by the p a r t i c i -pants, forming the basis for t h e i r current perspectives towards medication-taking . A. The I l l n e s s Experience P a r t i c i p a n t s described t h e i r i l l n e s s , or "sickness" which was the i r usual term, as a past occurrence, although none of them f e l t that they were "completely w e l l " at th i s point i n time. The descriptions of t h e i r s i c k -ness were i n d i v i d u a l i z e d , for example: " f e e l i n g very high or very low"; being "speedy" which was described as " t a l k i n g f a s t and being anxious"; "l o s i n g c o n t r o l " ; "I f e l t l i k e I was dying"; "went crazy"; "blanking out completely"; " f e e l i n g depressed and crying"; "thinking i n symbols and colors"; "hearing voices"; "thinking overtime"; and being "emotionally 80 d i s t r e s s e d . " Sometimes p s y c h i a t r i c terminology was used to describe the i l l n e s s , " b e i n g paranoid" and " h a l l u c i n a t i n g . " The term "nervous break-down" was often used to describe the experience i n a general way. The sickness was a l t e r n a t i v e l y r e f e r r e d to as d i f f i c u l t i e s within t h e i r l i v e s , demonstrating the d i f f i c u l t y of conceptually separating t h e i r i l l n e s s and t h e i r l i v e s . The sickness was described as having both i n -tern a l and external o r i g i n s . Internal o r i g i n s were such things as an i n f e r i o r i t y complex, exhaustion, and withdrawal. External o r i g i n s were such things as foreign substances l i k e a drug, accidents, family problems, and acts of God. Oftentimes, both external and i n t e r n a l o r i g i n s would be considered as possible causes. During the interviews, p a r t i c i p a n t s were involved i n evaluating and reconstructing these past i l l n e s s e s . S: They might not have known about my past, and I was i n the shape, I was, condition I was, they might have thought I was j u s t p l a i n s i c k , but I wasn't j u s t p l a i n s i c k . R: Uh-huh, what do you think i f they had known about your past would have made sense to them about the way that you were? S: Well, they might have r e a l i z e d that um, I wasn't crazy, that i t ' s a natural outcome from being neglected, from being abused. S: And I didn't, I don't sound a l l that crazy r i g h t through the whole thing. I, I could remember what happened and how i t happened, r i g h t . These reconstructions appear to represent the p a r t i c i p a n t s ' work i n r e s o l v -ing the questions of "how s i c k was I,'" "how did I come to be t h i s way^" and "was I crazy?V One subject, who had been informed of diagnosis, questioned the meaning of the diagnosis: S: I watched um, a program about madness, or something, and i t was a — boy who, say l i k e he was a schizophrenic. 81 R: Uh-hmm. S: And they showed him walking and hearing these voices i n him. R: Uh-hmm. S: I never had that. I think things, but I know i t ' s myself thinking. But I never have heard voices. So I don't know, I don't know r e a l l y what a schizophrenic i s . Differences i n how the p a r t i c i p a n t s and care-givers define "what i s sickness" were apparent: S: I dig my privacy. I dig being alone, you know. And when people t e l l me that's too much for me, "you're doing too much of that, i t ' s no good for you, i t ' s unhealthy," 1 and a l l t h i s business — and "you shouldn't be doing i t " ; and "don'.t do i t , " , and lock you out of your room and everything, I can't take that, I hate i t ! Another aspect of the i l l n e s s experience i s t h e i r current assessment of t h e i r health and the way i n which t h e i r l i f e i s currently influenced by the '.illness . R: I f you had to say how you f e e l r i g h t now i n terms of being well or being i l l , how would you c l a s s i f y yourself? S: In the middle. S: And I haven't had too bad reaction since then. R: Uh-hmm. S: Matter-of-fact, now, I think I'm thinking more normally. I'm planning on going back to work again steady. R: If you don't c a l l yourself well now, how do you see how you are now? S: Well, I j u s t see myself as normal, you know, I'm just normal. But I'm not, I think anybody who's 1just normal i s not excep-t i o n a l . R: Ya. S: You know, and I f e e l l i k e I'm sort of s p e c i a l i n a way, l i k e uh, l i k e uh I need care, I need to see a doctor, and um, I 82 have to be looked a f t e r . I have to look a f t e r myself. S: When I f i r s t got s i c k , i t was such an overwhelming thing that i t , you know, you didn't, you thought about i t constantly. R: Uh-hmm. S: But uh, I haven't had a relapse now for two years, so there-fore i t ' s not part of my l i f e . Wellness can also be defined i n terms of how much medication one takes, or being o f f of the medication. R: How, how do you think you would be i f you were to be well? S: Well, I think I, maybe I'd be able to take a l i t t l e b i t le s s medication than I'm taking now — I'm not r e a l l y as good as I'd l i k e to be. S: I t — i t never struck me that "Gee, now," I should have told myself "Now they've taken me o f f the p i l l s , now I'm well,." I never f e l t that way for some stupid reason. This might have worked on me, with h i s consent, you know, what I mean, but i t , i t never struck me, you know what I mean? The p a r t i c i p a n t s ' perspective on t h e i r i l l n e s s , both past and present, i s an important feature i n understanding medication-taking, as i s t h e i r perspective on treatment. B. Treatment Experience "Treatment experience" i s the researcher's term for the p a r t i c i p a n t s ' descriptions of t h e i r past contacts with the mental health system as well as experiences c l a s s i f i e d by p a r t i c i p a n t s as re l a t e d to "getting better;"" The long-term c l i e n t population v i v i d l y described what might be termed "the old mental health system,"'which was contrasted with "the new system." The "old system" can be characterized by the themes of h o s p i t a l -i z a t i o n as a punitive experience, dehumanization, and the i n j u s t i c e of th e i r s i t u a t i o n . 83 The descriptions of h o s p i t a l i z a t i o n i l l u s t r a t e t h e i r sense of imprison-ment: "they had you under t h e i r thumb"; "the way he (father) misrepresented me when I was imprisoned must have been a l l wrong"; and "I thought I was i n j a i l . " Dehumanization was conveyed i n t h e i r statements "you're l i k e a vegetable and they experiment on you," and "they don't have any f e e l i n g s , they treat you l i k e animals." The i n j u s t i c e of t h e i r s i t u a t i o n i s por-trayed i n statements: "I needed human therapy, not shock therapy"; "the i n f l i c t i o n s and pain and the i n s u l t s " ; and " I t used to be considered a miracle when anybody got released from that h o s p i t a l . " Their sense of i n j u s t i c e was heightened by seeing themselves as d i f f e r e n t from the other patients: " a l l those people being so s i c k . And I f e l t I wasn't s i c k . I f e l t they were a l l crazy" and "they used to lock the doors and they had these o l d women with these forked dog's teeth hanging out, you know."- One pa r t i c i p a n t described strategies for s u r v i v a l i n the h o s p i t a l amongst what were described as undesirable fellow patients — "never had a fe a r . Mind my own business, kept my mouth shut." Negative treatment experiences were not reserved for the h o s p i t a l , as one p a r t i c i p a n t described the community as " a l l they were interested i n was getting moneyj". More p o s i t i v e descriptions of the h o s p i t a l were as a place providing "reconditioning" and where one subject "learned to work." In contrast to the past, the "new system" was presented as superior i n both a t t i t u d e towards the patient and knowledge of mental i l l n e s s , i n -cluding medication. S: They're s t a r t i n g the philosophy now where the patient has a mind of h i s own, and he can recuperate on h i s own, more, better than being forced into thinking the way of the p s y c h i a t r i s t . I f i n d that that's the d i f f e r e n c e i n the way they treat mental i l l n e s s now, i s that the person who i s affected, mentally, by the s i t u a t i o n , can work the i r way out themselves, you know, which gives them a c e r t a i n amount of s e l f - r e s p e c t , i n a way. 84 S: Well, I think they know a l o t more than they knew then, too, about side e f f e c t s , f o r example. R: Uh-hmm. S: I think everything's j u s t , they're f i n d i n g out, doing more research, and that, on drugs, and they're f i n d i n g out more things and that, than they did maybe 20 years ago. Other s i g n i f i c a n t themes i n p a r t i c i p a n t s ' discussions concerning "what makes them b e t t e r " were t h e i r e f f o r t s to manage t h e i r l i v e s , leading to b e l i e f s i n a wide v a r i e t y of things which have been h e l p f u l to them. These themes c l e a r l y demonstrate the intertwining of " l i f e - , " " i l l n e s s , " and "treatment," and how they are l i v e d as one by the patient. L i f e management included the p a r t i c i p a n t s ' learning experiences about themselves, p a r t i c u l a r l y learning those things which contributed to the "sickness." S: And I think I've gotten to know myself better and so I'm much more aware. Like I would do things l i k e worrying about myself, and r e a l l y being s t r e s s f u l , and whether i t ' s the medication that slows you down, um, now whether that's helped or the therapy's helped, I don't know, or j u s t getting older and getting wiser, I would say I'm r e a l l y a l o t better than what I used to be. S: I can't take a l o t of pressure. R: Uh-huh, i s that your own idea, or i s t h i s been something that you've been to l d or how have you come up with that conclusion? S: No, i t ' s j u s t something I've learned over the years about myself. P a r t i c i p a n t s ' b e l i e f s about those things which contributed to wellness varied widely. L i f e s t y l e was considered important by some: exercise, general a c t i v i t y l e v e l , a routine, good d i e t , s u f f i c i e n t sleep, and good health i n general. Some emphasized r e l i g i o n and f a i t h . Interpersonal r e l a t i o n s h i p s were seen of s i g n i f i c a n t help: "a strong family"; "having 85 r e s p o n s i b i l i t y " ; " s e t t l i n g marriage problems"; "support"; "therapy"; " a f f e c t i o n " ; "nice warm people to t a l k to"; and patient organizations such as Mental Patients' Association ("M.P.A.") and the Coast Foundation. Nega-ti v e influences on t h e i r lives/wellness were mentioned, such as lack of money and l o n e l i n e s s . P a r t i c i p a n t s were asked to compare medication with other factors con-t r i b u t i n g to wellness. Medication was seen as s i g n i f i c a n t i n how they were f e e l i n g , sometimes the most important thing. However, other factors were seen as most important by some. R: What might be more important than the medication? S: Oh, getting support, maybe. R: Uh-huh, support, l i k e what kind of support? S: Just that I'm normal, I'm going to be O.K. without medi-cation, l i k e I'm functioning O.K. I'm doing w e l l . Maybe I'm mature now. R: Uh-huh. S: And uh, that my decisions aren't a l l crazy. The impression conveyed by the consideration of medication v i s a v i s other aspects of the patients' l i v e s i l l u s t r a t e d again the pervading nature of the illness/treatment experience on people's l i v e s . What for others may simply be l i v i n g becomes i l l n e s s management for the person with schizo-phrenia. I l l n e s s management i s an on-going process during which t r e a t -ments, such as medication, are evaluated. The way i n which the long-term group perceived the "old mental health system" has been discussed. P a r t i c i p a n t s ' descriptions of other previous treatment experiences also i l l u s t r a t e the way i n which c l i e n t s ' percep-tions of treatment w i l l d i f f e r from t h e r a p i s t s . C l i e n t s can be aware of the way i n which t h e i r actions w i l l be viewed by health professionals, and 86 may modify t h e i r behavior accordingly. S: And then, I, he l e t me out, the doctor l e t me out and I went. I didn't t e l l him I was going (on a t r i p ) because I thought he thought I might be f a n t a s i z i n g or something. As discussed i n Chapter Three, accounts change and p a r t i c i p a n t s also acknowledged changes i n t h e i r evaluation of previous treatment. R: Uh-hmm. What I'm wondering i s , uh, when did you sort of s t a r t to see things i n terms of the past the way that you do now? S: I think, uh, gaining more r e s p o n s i b i l i t y . I r e a l l y got started getting better, the h o s p i t a l was r i g h t . R: Uh-huh. S: They were r i g h t , except that, I needed, I needed uh — well, I don't know what I needed (laughs). Subjects presented a considerable amount of information related to th e i r past experiences with medication: the types of medications which they have been on i n the past; medication changes including type and dosage; t h e i r assessments of these experiences; and various other episodes i n t h e i r medication-taking h i s t o r y . An example of such information i s : S: I said to, to the nurse one time, I sa i d "I don't r e a l l y need that much medication." I said something l i k e that, and I said "I think I'd be O.K. without so much medica-t i o n . " She said "Prove i t . " I said "Well, how can I prove i t i f I'm on a l l that medication, you know." Three categories of past experience bear p a r t i c u l a r mention because of the content emphasis placed on these categories i n the p a r t i c i p a n t s ' accounts. These categories are: experiences concerning stopping the med-i c a t i o n ; experiences with side e f f e c t s or "bad r e a c t i o n s " to medication; and times when the medication worked remarkably w e l l . 1. Stopping the medication Cessation of medication occurred i n several ways. The doctor might discontinue the medication, frequently i n response to the person's requests 87 for reduction or cessation. P a r t i c i p a n t s discontinued medications, often done i n s i t u a t i o n s where there was not regular contact with an agency or doctor. One p a r t i c i p a n t described d e l i b e r a t e l y not returning to a doctor who had not responded to concerns about the medication — " I f i n a l l y decided I wasn't going back to see him...because he wouldn't l i s t e n , to take me o f f and put me back on p i l l s . " These medication stoppages were temporary as par t i c i p a n t s resumed taking medication, sometimes v i a the route of h o s p i t a l i z a t i o n . In retrospect, they commented on the i r possible lack of wisdom with these stoppages, assuming some r e s p o n s i b i l i t y for doctor-induced stoppages due to t h e i r a c t i v e promotion of the stoppage. S: I shouldn't have gone o f f i t when that doctor t o l d me, when I could. I think I got my own way there. S: And I think I was a l i t t l e b i t s i c k then, too, because I wasn't taking my medication and, and that (Hospital), they should have followed up on me. R: Uh-hmm. S: They should have, but they never...and they said that i f you stop taking your medication, then y o u ' l l , y o u ' l l run into trouble, but I never believed them. 2. Side effects Current side e f f e c t s have been discussed. In discussing past side e f f e c t s , the pa r t i c i p a n t s described such problems as sunburn, constipation, blurred v i s i o n , shakiness, and res t l e s s n e s s . An important aspect of the side e f f e c t experiences was the act i o n taken by the therapist to help the patient obtain r e l i e f : s i d e - e f f e c t p i l l s or i n j e c t i o n s , dosage reduc-tions, or medication changes. Lack of attention to these problems could lead to an angry patient and drug stoppage. Some of the untoward reactions to medications were termed "bad reactions," "adverse e f f e c t s , " or s i m i l a r 88 terms, rather than side e f f e c t s . The most frequently mentioned traumatic experiences i n r e l a t i o n to medication side e f f e c t s were t h e i r experiences on i n j e c t a b l e drugs. S: ...a l o t of them get i n j e c t i o n s . And I was on i n j e c t i o n s once and I didn't do too well on them. I guess they didn't agree with me or I, I was so nervous and I tore holes i n my clothes and I was always picking. 3. Positive experiences with medication The kinds of p o s i t i v e experiences recounted included medication changes which prevented h o s p i t a l i z a t i o n and rapid response to increased medication. These episodes r e f l e c t e d confidence i n the medication, often i n the p a r t i c u l a r medication involved, "because i t ' s done me the best." This confidence i n medication was reinforced by the care-givers. S: My doctor wrote a l e t t e r , and he was saying, w e l l , g i v i n g me the benefit of the doubt, he was saying "well as long as S keeps on medication.", R: Uh-hmm. S: " U n t i l the time comes when she can be taken o f f , she , w i l l never have another nervous breakdown-," because he'knew that, you know. C. The Process of Deciding About Medications The c l i e n t s ' conceptualizations of i l l n e s s and treatment provide a context for current medication-taking. The linkages between t h e i r past experiences and t h e i r current perspectives w i l l now be examined. P a r t i c i -pants expressed changes over time i n t h e i r perspectives towards medication-taking, although the complexity of s o r t i n g out what has been h e l p f u l to them i s evident. Uncertainty, expressed as self-doubt and lack of con-fidence, was displayed i n t h e i r conclusions of what i s t h e i r best course of action and also increased the influence which health professionals 89 had on their decisions. They assessed how the medication has helped, a major consideration being how they are doing now while on medications vis a vis how they have done in the past, both off and on medications. S: I have thrown my p i l l s out in the past too. I've learned from that, I've learned that that's not the way to get well, you know. S: Well actually my attitude has changed, even though I said to the nurse one time, "I'm not takin' no anti-schizoid shit,'! you know, but s t i l l I did, I did manage to, you know, accept i t more, you know. R: What, what kinds of experiences do you think were really important i n learning that? S: Well, just the way I feel, I'm taking my (medication) and, um, the experience of what happened when I threw away my p i l l s , and once when the doctor took me off, and the last time they took me off when I should have been on them, I think. S: I know I wouldn't, I wouldn't have said this when I was f i r s t taking p i l l s . This i s , i t ' s a learning process. It's, i t ' s just trying, you, you sort of like start from 1 to 10. And then, when you get past 5, you can start to talk about i t . But I'm at about 8. S: But I had to stay in the hospital. And I thought that would be a l l right, as long as I could be off medication, because I hated i t so much. R: Uh-huh. S: I didn't think I'd ever willingly take i t , outside of the hospital. These participants express a learning experience which has changed their attitude in a positive direction towards taking medication. Other attitude and behavioral changes were expressed, for example, a change to-wards greater self-determination on the part of the individual towards 90 medication-taking. R: That say 20 years ago, you might have taken them exactly? S: As I was t o l d , but now I'm experimenting myself. R: Uh-huh. S: To see what I can do, uh, I can do with l e s s of t h i s , or less of that. R: Uh-hmm. S: I'm doing the experimenting myself. R: Uh-hmm. How do you f e e l about that? S: Good. Both the long-term and short-term groups expressed a t t i t u d e change based on experience, although the time span of t h i s process was much greater for the long-term group. These a t t i t u d e and behavioral changes based on experience with t h e i r i l l n e s s , treatment, and medications were features of the accounts. THE MORAL IMPLICATIONS OF MEDICATION-TAKING The p a r t i c i p a n t s described medication-taking as having what w i l l be termed "moral implications."~ In the context of t h i s t h e s i s , moral means a value judgment, imparting either goodness or badness to the person, i n th i s case by v i r t u e of th e i r i l l n e s s , treatment, and taking the medications i n question. The previous discussion of medication-taking, has emphasized the cognitive dimension, the p a r t i c i p a n t s ' b e l i e f s and understandings con-cerning medication-taking. Thus f a r , moral implications have only been suggested. For example, i n the discussion of the context of medication-taking, i t was stated that, i n introducing medication-taking, evaluative statements were made. How-ever, these evaluative statements could r e f e r to the technical "goodness," 91 as i n effectiveness, or the moral "goodness" of the medication. The "old system" of treatment, characterized by dehumanization, was portrayed by the p a r t i c i p a n t s as a morally degrading experience. S: I had a b i t of a complex, that I wasn't as good as other people, you know, from being i n the h o s p i t a l . This section further develops the moral implications of medication-taking. The moral value which the par t i c i p a n t s a t t r i b u t e d to themselves was influenced both p o s i t i v e l y and negatively by the i l l n e s s , the treatment, and medication-taking. P a r t i c i p a n t s expressed awareness of the public's attitudes towards i l l n e s s and treatment. In t h e i r experiences with others, or from t h e i r perception of the public at large, they expressed that mental i l l n e s s has been equated with " l a z i n e s s , " "weakness," " d i r t i n e s s , " and "being unkept,") as well as "craziness." S: I don't know much about the stigma, except that people think you're s t i l l crazy and a l l t h i s . R: O.K., i s uh — S: People think you're crazy and they don't l i k e i t , they think you're crazy, they laugh at you, and they put you down. Because of t h e i r knowledge of these a t t i t u d e s , the pa r t i c i p a n t s stated they used judgment i n whom to t e l l about t h e i r i l l n e s s and treatment experiences, "I'm c a r e f u l with each person." Several mentioned d i f f i c u l t i e s f i n d i n g and keeping jobs due to t h e i r h o s p i t a l i z a t i o n h i s t o r i e s . P a r t i -cipants a t t r i b u t e d these attitudes to a lack of knowledge on the part of the p u b l i c . S: I think a l o t of quote "normal's" r e a l l y don't know what they're t a l k i n g about because there comes a time that you jus t don't have any c o n t r o l . S: Because a l o t of people do have a lack of understanding, they don't understand, you know, and people aren't capable. 92 A p a r t i c i p a n t also expressed that public opinion was improving: S: I think people are becoming more educated and i t ' s more common these days. I don't think i t ' s so much of a problem as i t was before, when I had i t , you know. The p a r t i c i p a n t s expressed t h e i r sense of the abnormality of th e i r l i v e s , v i s a v i s the "average person." This sense of abnormality was conveyed by phrases such as "working t h e i r (patients') way back into citizens;," "as i f I'm the one down below," -"even a normal p e r s o n , " i " i t seems that I turned out a Black Sheep',*" "I f e e l l i k e my whole l i f e ' s been a waste," ^ and "I was j u s t born l a z y . " P a r t i c i p a n t s perceived t h e i r i l l n e s s as morally degrading. S: Like when you're put i n a c e l l (at the h o s p i t a l ) , nobody talk s to you, nobody wants to t a l k to you, and simply you're j u s t f u l l of uh, you know, considered as uh, as anybody that, that be crazy, r i g h t . S: Like everybody, I thought I was going to be mental. Well, I guess you can c a l l i t mental, but anyways, I ended up what I am anyhow, and um, so i t was nice then. R: Uh-hmm. S: To f i n a l l y f i n d out that somebody knows what you were t a l k i n g about. R: Uh-hmm. S: And to f i n d other people who had the same thing. The above excerpt conveys that the p a r t i c i p a n t preferred to have "some-thing" defined, rather than being grouped i n the large category "mental" and that i t was meaningful to meet others with that "something." Experiences with the i l l n e s s , and tr y i n g to make th e i r way i n l i f e , did not always lead to the p a r t i c i p a n t s ' perceiving themselves as having lowered moral standing. One p a r t i c i p a n t , due to r e l i g i o u s a f f i l i a t i o n , saw the experience as imbuing a sense of "pride" and "accomplishment," 93 for having overcome the "struggles and temptations." S: I think everybody i s placed on this earth, not by accident, there's a purpose, everybody has a mission to f u l f i l l . Others adopted a morally neutral stance: " i t wasn't such a bad thing, having a nervous breakdown*. "• Medication-taking has moral implications. Participants talked about the d i f f i c u l t y accepting the notion of taking medication. Medication-taking was described as "not normal. S: It doesn't seem normal to take i t . R: What do you, you laugh when you say "as normal as I ' l l ever be," what do you mean by that? S: Well, that's just me, that's my l i t t l e joke about myself. R: Uh-huh. S: I don't think I ' l l ever be able to go without drugs at a l l , but maybe I ' l l be able to go with less of them. R: If you were off of the p i l l s , you'd just be normal, just like everybody else? S: Um. R: Does being on p i l l s make you feel that you're not? S: Uh, yes, i t does. R: Uh-huh. S: Because I wouldn't be taking them. R: Can you, you know, t e l l me a l i t t l e more about that, what — S: Well, the other people are not taking them, and they're getting along fine in this world and doing the best they can, and I think I can do the same thing. 94 S: I don't know, maybe i t gave me an i n f e r i o r i t y complex, because I used to think that I wasn't as good as other people, but uh, R: Related to being on medication? Because you were on medi-cations? S: Ya — because I was on medication. R: Uh-huh. S: My s i s t e r would t e l l me I had to be on medication for the rest of my l i f e . Other descriptions of medication-taking contributed to the o v e r a l l impression that being on medication was morally i n f e r i o r : use of the term "pride" i n being able to do without medication, and r e f e r r i n g to medica-t i o n as a crutch. As mentioned previously i n regard^ to p a r t i c i p a n t s ' expectations of medication-taking, to be o f f medication was seen as d e s i r -able, " i t ' s better for us, maybe, i f we can get along without i t . " A male p a r t i c i p a n t expressed that i t was more d i f f i c u l t f o r a man to be on medication, which was rel a t e d to h i s ideas concerning masculinity and men having greater strength and r e s p o n s i b i l i t y than women. Some pa r t i c i p a n t s acknowledged but challenged the moral implications of medication-taking. S: What's taking a few p i l l s a day? R: Uh-hmm. S: As I say, I don't think a di a b e t i c ' s ashamed of taking i n -s u l i n , why should we be ashamed of taking our medication? Although one p a r t i c i p a n t denied f e e l i n g badly about being on medica-ti o n , s e l f - d e s c r i p t i o n s and descriptions of i n t e r a c t i o n s with others i n d i -cated awareness and acceptance of the negative moral implications. The moral implications of medication-taking influence the p a r t i c i -pants' practices i n regard to medication-taking, including i n f l u e n c i n g 95 whether the pa r t i c i p a n t s take medication at a l l . The two most discussed aspects were the management of taking medication away from home and the management of information to such persons as friends and employers. One p a r t i c i p a n t never took the medication along when going out, to avoid being i d e n t i f i e d as taking medication. Others expressed embarass-ment at taking p i l l s i n pub l i c , although s t a t i n g "probably people would never know what they're for anyway."' P a r t i c i p a n t s also expressed concern that people might think they were taking dope or that they were drug addicts. Taking the medication i n front of people presents an opportunity for persons to ask questions, such as what type of medication and why i s the person taking i t . — subjects that would not o r d i n a r i l y come up i n con-versation. The par t i c i p a n t s then had to manage what to say i n such a s i t -uation . Management of information about medication to fr i e n d s , employers, etc. was of concern to the p a r t i c i p a n t s . S: I don't think anybody needs to know. I think i t ' s some-thing between you and the doctor. R: Uh-huh. S: And I think, uh, you should be given a chance. The people now don't know I'm on medication. S: D i f f e r e n t ones w i l l ask me what drugs are you on, , and I ' l l j u s t say "Well, they're a l l t r a n q u i l i z e r s " and I drop the subject. R: Uh-hmm. So I get a sense that, of a very strong f e e l i n g of privacy, towards the topic of medication, eh? S: Uh-hmm. R: Is i t you're concerned what your friends might think of, of you, i f they were to know more, or why do you think that sense of privacy i s there? S: Well, some of them may ju s t drop me as a f r i e n d , I think, and want nothing to do with me. 96 These comments i l l u s t r a t e the p a r t i c i p a n t s ' management of information, questions of who should be t o l d and what should they be t o l d . Some p a r t i -cipants stated that they did not discuss medication with anyone but thei r t h e r a p i s t s . Some mentioned speaking about medications more f r e e l y i n the past, but gradually becoming more closed due to the reactions they en-countered. Some pa r t i c i p a n t s f e l t they were generally f a i r l y open about being on medication, although they also c i t e d i n d i v i d u a l s with whom they chose not to discuss medication. S: This one i n p a r t i c u l a r . She had not got, she had stopped taking medication and, um, she had pulled h e r s e l f out of i t . And had no reason, wasn't, you know, didn't r e a l i z e d , couldn't see why I couldn't do the same. Wasn't the l e a s t b i t sympathetic, j u s t that you shouldn't have got si c k , you shouldn't have gone into the h o s p i t a l , you shouldn't be taking medication. R: Uh-hmm. S: "I didn't have to so therefore,',' you know, and nobody was any worse o f f than she. So i t was mainly for t h i s one person that I, you know, I didn't say anything. P a r t i c i p a n t s explained t h e i r pattern of information control i n a va r i e t y of ways, that i s , why i t i s necessary to cont r o l information: t h e i r f r i e n d s ' lack of information about medication caused t h e i r negative a t t i t u d e , or that "most people don't know anything about i t so aren't in t e r e s t e d " and therefore don't want much information. Some pa r t i c i p a n t s acknowledged the possible stigmatization due to medication-taking and responded to i t i n a d i r e c t manner. S: I say i t doesn't bother me being on medication. If I was, I keep using t h i s d i a b e t i c because the doctor t o l d i t to me and i t was good, and as I said, I don't mind i f I'm on i t . S: Because people don't understand, they don't have that same understanding so, but, but I'm above that, you know, above th e i r lack of understanding. I can teach otherwise. 97 R: So they look at you and you can look at them, and they can think what they want and y o u ' l l think — S: I never had a stigma or a prejudice or anything, sort of thing, so I ' l l damn well look r i g h t back at them. R: What do you think that they would think about the medi-cations? S: I don't give a darn. One group of people with whom pa r t i c i p a n t s could f r e e l y discuss medi-cation were those persons who have taken or are also taking these medica-tions . R: So what kinds of things would you talk about with her? S: Oh, how people think. R: Uh-huh. S: If you think, you know, i f they're t a l k i n g about us or something. S: You're not being, um, what you c a l l , um, you know that they've been on medications, they're not, uh, oh, high and mighty with someone. In add i t i o n to sharing concerns about the moral implications of being on medication and providing a morally neutral t e r r i t o r y , t h i s group pro-vided opportunities f o r information-sharing about medication-taking. Organ-iz a t i o n s such as the MPA and the Coast Foundation provided opportunities for p a r t i c i p a n t s to be with, and share with, others who are also on med-i c a t i o n . As w e l l , both organizations have sponsored occasional formal discussions, with i n v i t e d professionals such as p s y c h i a t r i s t s and nurses, for learning about medication. 98 THE INFLUENCE OF OTHERS ON MEDICATION-TAKING A. The Family's Influence on Medication-Taking The r o l e of i n d i v i d u a l s and organizations was discussed i n terms of information management. The p a r t i c i p a n t s discussed t h e i r family's r o l e i n terms of support. Families were seen as either supporting t h e - p a r t i c i -pant's point of view or holding a perspective contrary to the p a r t i c i p a n t . Thus, the same stance on the part of a family, either encouraging or d i s -couraging the taking of medication, was seen as either supportive or non-supportive, dependent on the p a r t i c i p a n t ' s point of view. Supportive actions by fam i l i e s were described as reminding the par-t i c i p a n t to take medication, r e i n f o r c i n g the therapist's point of view i n regard to treatment, and encouraging the i n d i v i d u a l ' s a b i l i t y to cope with-out medications. An i n t e r e s t i n g example of family support i s portrayed i n the following p a r t i c i p a n t ' s comments: S: My Mom and Dad were so disappointed i n me. They^said, "Well, I thought you would j u s t t a l k to them, not admit yourself, there's nothing wrong with you." They kept s t i c k i n g up for me. And I said, "Well, I ' l l j u s t get, you know, a l i t t l e help." Although the family i n the above excerpt expressed disappointment at the pa r t i c i p a n t ' s action, the p a r t i c i p a n t saw t h e i r stance as supportive of her — " s t i c k i n g up for me." I t seems that they were supportive of her normalcy, and the a b i l i t y to manage on her own, perhaps r e f l e c t i n g her own ambivalence during a c r i s i s period. Non-supportive actions by f a m i l i e s were described as f a m i l i e s ' questioning of the medication and expressing that the i n d i v i d u a l s should not be on medications, contradicting the i n d i v i d u a l s who think they should be on medication at t h i s point i n time. Conversely, another p a r t i c i p a n t f e l t h i s family's emphasis on medication-taking was s i l l y : 99 S: The advice i s always t h i s , you know, l i k e don't forget to take medication and keep on with i t . R: Uh-huh. What do you think about that? S: I think i t ' s s i l l y . I should have stopped. In another s i t u a t i o n , a man whose wife took an ac t i v e role i n admin-i s t e r i n g the medication expressed that her dominant r o l e increased h i s • sense of shame i n having to take medication. Families also r e l a t e d i n r e l a t i v e l y neutral r o l e s towards the medica-tion-taking. As w e l l , some close friends who were taken into confidence by the p a r t i c i p a n t s also acted i n these supportive, non-supportive, or neutral stances. Although p a r t i c i p a n t s did not always comply with family or others' wishes, these wishes did influence th e i r medication-taking p r a c t i s e s . R: Uh-huh, so i t sounds l i k e you're f i n d i n g a happy medium, between — S: Between the c l i n i c and my Mom and Dad, I'm f i n d i n g a happy medium. R: And i f you weren't on the medication? S: Uh, she's very leary, leary of me. R: Uh-huh, so, um, do you think i f you weren't on them, she would not be around, i s that? S: Ya — um, I'd be shown the door. Other actions such as reminding the p a r t i c i p a n t to take medication have been mentioned previously. B. Therapist-Patient Relationship and Medication-Taking Families and friends influence medication-taking. However, the therapist's r o l e i s even more important, as medication-taking i s not a s e l f - i n i t i a t e d a c t i v i t y , but i s a course of action emanating from the 100 t h e r a p i s t . The r o l e of t h e i r doctor/therapist has been mentioned pre-v i o u s l y , for example, i n conjunction with the reasons for taking medica-t i o n . P a r t i c i p a n t s expressed that currently t h e i r therapist and the " c l i n i c doctor were the primary persons with whom they discussed medication. As we l l , doctors, nurses, s o c i a l workers, and other mental health professiona have been major sources of information i n the past. These health pro-fe s s i o n a l s were seen as legitimate sources of information, that i s , the persons with whom they should discuss medications. R: I t sounds l i k e you've received information from (therapist)? S: Well, and other people. R: And other people too? That's what I was wondering about. S: Doctors. R: Ya? S: Not anybody who doesn't know. However, p a r t i c i p a n t s also f e l t health professionals did not know everything about medication; there was a recognition that the c l i e n t and the therapist would have d i f f e r e n t perspectives on medication-taking. R: You had mentioned you wanted them (doctors) to " l e v e l " with you, and I'm wondering i f there's any s p e c i f i c information that you would l i k e to know about the medica-tions? S: Well, I think they don't understand, because a person with an experience i s worth a thousand without. R: Uh-huh. S: And uh, they j u s t t e l l me, they just read out of books what the books say about them. R: Uh-huh. S: And I go by, by what I know, through, through, through, uh, l i k e they don't t e l l me anything about the medication, I have to go and f i n d out myself. 101 R: Through your own experience, i s that what you mean? S: Not only that, through um, through t a l k i n g to other patients and, and other people. Another p a r t i c i p a n t commented on the f i x e d nature of the pr o f e s s i o n a l s ' viewpoints. R: What about, um, have you learned much about medication from say the doctors and, and therapists that you've seen at the Care Team, or? S: Yes, but uh, I've found that they're not r e a l l y as, c o n — not conscientious, that's not the word, uh, but uh, under-standing i n so many ways, uh, they f e e l that they're correct i n what they're doing. And you can't change the i r a t t i -tudes and t h e i r b e l i e f s as far as that's concerned. The notion of health professionals "not l e v e l l i n g " with them was mentioned by p a r t i c i p a n t s , as suggested by a previous quotation. P a r t i -cipants expressed wishing more medication information on such questions as: why are medications changed, what the medication was meant to do, how long w i l l they need to keep taking medication, the e f f e c t s of the medica-t i o n as one ages, and what i s an average dose. R: Would you l i k e to know more or d i f f e r e n t things about i t (the medication)? S: I would l i k e to know more about i t . R: Uh-huh. S: Uh, what i t ' s supposed to — how long i t w i l l take to, for me to keep taking them? One p a r t i c i p a n t complained that the answer to questions was i n e v i t a b l y "take your medication," Jwith no other information forthcoming. P a r t i c i -pants l i k e d "them to give i t to me r i g h t on the l e v e l . " R: Can you.think of anything i n p a r t i c u l a r that Dr. . does that you f e e l i s helpful? S: Well he t e l l s me r i g h t out things. If he wants to say something, he says i t r i g h t out, he doesn't keep i t from me. 102 The importance of the therapist's att i t u d e has already been mentioned, for example, i n the discussion of treatment experiences, the general im-portance of support, and i n conjunction with reasons for medication^ taking. P a r t i c i p a n t s placed considerable emphasis on the therapist's attitude... S: But, uh, there has to be some sort of humane a t t i t u d e between the patient and the doctor, I believe, before they can r e a l l y come to a serious discussion on how medications are a f f e c t i n g you, and uh, and other things besides that, s o c i a l i z i n g . S: (Doctor) helped me by, he's helped me change my at t i t u d e towards medication j u s t , just by l i k i n g me e s p e c i a l l y for being myself, sort of, more or l e s s . R: What are your expectations of, you know, whoever you -work with, be i t (therapist) or the doctor, i n terms of your medication? S: Have a good, have a good understanding of me. R: Uh-huh. S: And knowing what p i l l s can do what, or are better for what person. Similar to the desire to be " l e v e l l e d with" i s the expectation that the therapist/doctor w i l l present t h e i r point of view. S: But I didn't want him to leave i t up to me, because, because, uh, a f t e r a l l I'm, I'm, I'm supervised, you know, with the medication. It appears that p a r t i c i p a n t s valued th e i r own experience and ideas, and wished professional recognition of these, but also valued the knowledge of the pro f e s s i o n a l s . One p a r t i c i p a n t , who placed great t r u s t i n the the r a p i s t , stated the therapist had concerns about t h i s t r u s t : S: (Therapist) sometimes doesn't l i k e me to trust him at a l l . 103 R: Can you t e l l me a b i t more about t h a t , t h a t i t sounds — t h a t he sometimes t h i n k s y o u s h o u l d n ' t t r u s t him, i s t h a t how i t goes? S: Uh, y'm, beca u s e I'm d o i n g t h e h e l p m y s e l f towards my body and my — R: Uh-hmm. So, uh, I'm s t i l l n o t too c l e a r on t h a t , can you t e l l me a b i t more? S: W e l l , uh, I , I'm making him i n t o a God. P a r t i c i p a n t s d e s c r i b e d t h e i r p a t t e r n o f i n t e r a c t i o n w i t h t h e r a p i s t s , p a r t i c u l a r l y d o c t o r s , i n r e g a r d s t o m e d i c a t i o n s . The p a t t e r n appeared to be one o f t h e p a t i e n t g i v i n g i n f o r m a t i o n and t h e d o c t o r making a d e c i s i o n based on t h a t i n f o r m a t i o n . R: You mentioned t h a t you d i d n ' t know what t h e d o c t o r would do? Do you i n f l u e n c e t h e d o c t o r i n any way, and i f s o , how? S: I j u s t t e l l him my p r o b l e m s , l i k e how I've been s l e e p -i n g , and t h e n l e a v e i t up t o him and l e t him d e c i d e . R: What do you t h i n k about t h a t system? S: W e l l , I don't know a n y t h i n g about m e d i c i n e . I'm n o t a n u r s e o r a d r u g g i s t . R: How might you i n f l u e n c e what t h e y (Care Team) g i v e y ou, i n terms o f m e d i c a t i o n ? S: Uh, w e l l , you t e l l them yo u r r e a c t i o n s t o p i l l s , t h a t ' s a l l t h e y ask f o r , s e e i n g i f they s u i t y o u , you know. And uh, w e l l , uh, what, y o u , you l e t them more o r l e s s t e l l you t o o . You know, th e y have t o know t h e e f f e c t s of th e p i l l s you've been on. R: Uh-hmm. S: And uh, i t ' s r e a l l y , d i f f e r e n t d o c t o r s a r e d i f f e r e n t i n t h e i r , i n t h e i r p e r s p e c t i v e o f how p e o p l e s h o u l d t a k e med-i c a t i o n s , you know. R: Uh-huh. S: Some d o c t o r s b e l i e v e i n k e e p i n g you on a minimum dosage f o r a l o n g t i m e , and t h e n t h e y d e c i d e t o go t o , e i t h e r t a k e you o f f them, o r i f t h e y t h i n k y o u ' r e n o t w e l l enough, t h e y g i v e you more I suppose, I don't know. 104 P a r t i c i p a n t s described themselves as assuming a passive r o l e i n these i n t e r a c t i o n s . As mentioned i n Chapter Three, t h i s content area was d i f f i c u l t for pa r t i c i p a n t s to discuss, probably due to feeli n g s of l o y a l t y towards t h e i r care givers and concerns about "in c r i m i n a t i n g " themselves. P a r t i c i p a n t s described f e e l i n g leary or uneasy about changes to another medication, medication increases, and medication decreases, but did not discuss these concerns with the doctors. Questions such as "how long am I to be on medication" or what therapists meant by c e r t a i n remarks would go unasked. R: I t sounds to, to me that uh, you have some reservations about how much you can, say, disagree with the doctor about the medication? S: Uh-hmm. R: Like i f he says t h i s i s the way i t ' s going to be, I don't think that you — S: I don't say anything back. R: Uh-huh? S: No. R: How, why do you think that's the case? S: I don't know. The p a s s i v i t y of the p a r t i c i p a n t s was also displayed i n t h e i r descrip-tions of being on medication: "he's ju s t trying me out on something else, :" "he'd keep me on i t , " "they took me off that," and other phrases which emphasize the act i v e r o l e of the care-givers and the p a r t i c i p a n t s ' p a s s i v i t y . An aspect of this p a s s i v i t y i s the p a r t i c i p a n t s ' b e l i e f s that therapists w i l l understand the meaning of t h e i r i n d i r e c t communication and they likewise attach meaning to the r a p i s t s ' actions which have not been explained to them. 1 0 5 S: He's seen me with the car and he doesn't say anything at a l l (the subject thus assumes the therapist approves of driving the car while on medication). R: How are they aware (that the participant didn't want to be on medication)? S: Well, because I stopped them before. (R then asked why S didn't ask directly.) S: Well, I don't feel direct a l l the time. R: Uh-huh. S: Because they'll be thinking "Well, why does she keep asking me about being off the p i l l s . " S: But he increased them and I don't know what his reason was, he didn't say, I don't think he gave a reason. Uh I don't know, I don't know what, unless, I don't really know, no. Unless he wanted to see i f I was trustworthy in taking them a l l the time. The reasons for the passive stance on the part of the participants seemed related to the rational power they attributed to the therapists, based on the therapists' knowledge, and partly based on historical patterns of interacting with their mental health care-givers. One can infer that treatment experiences, particularly experiences with the "old system,"; would contribute to this passive stance. However, the short-term group, without this historical basis, also assumed this passive stance, so that past experience is not sufficient. As mentioned earlier in regards to participants' expectations, participants valued the "doctor's" judgment and wished to work with the doctor. As well, the relationship between the decision-making and the influence of health professionals has been mentioned, and this relationship i s consistent with the participants' stance as well. One participant acknowledged that perhaps "they're wait-106 i n g f o r me t o say s o m e t h i n g " ; h e r s i l e n c e was not a t t r i b u t e d t o f e a r b u t t o h i s t o r y , " I ' v e been s e e i n g d o c t o r s and p s y c h i a t r i s t s e v e r s i n c e I was 17 y e a r s o l d . " F i n a l l y , a l t h o u g h p a r t i c i p a n t s may n o t engage i n a c t i v e n e g o t i a t i o n s c o n c e r n i n g t h e i r m e d i c a t i o n , t h e i r p a s s i v i t y i n t h e i n t e r a c t i o n i s n o t s i g n i f i c a n t o f a t o t a l l y p a s s i v e s t a n c e i n r e g a r d s t o m e d i c a t i o n - t a k i n g . The c h o i c e t o t a k e m e d i c a t i o n o r n o t r e s t s w i t h t h e p a r t i c i p a n t . R: When I was t a l k i n g about t h i s , I was meaning you f e e l l i k e t h e y uh, t h e y r e a l l y e x p e c t you t o t a k e them t h a t way, and t h a t i t ' s v e r y d i f f i c u l t f o r you t o d i s a g r e e , and s a y "Oh no, I'm not g o i n g t o , " eh? S: I n e v e r have done t h a t . R: You've n e v e r done t h a t ? S: But I've a l , a l w a y s d e c i d e d what p i l l I'd t a k e . T: Uh-huh. S: I f I d i d n ' t l i k e i t , I j u s t n e v e r t o o k i t . A n o t h e r p a r t i c i p a n t e x p r e s s e d e x e r c i s i n g t h i s c h o i c e by r e f u s i n g t o r e t u r n t o t h e p s y c h i a t r i s t . SUMMARY T h i s c h a p t e r has p r e s e n t e d t h e p a r t i c i p a n t s ' a c c o u n t s of t h e i r m e d i c a -t a k i n g , o r g a n i z 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 u s i n g c a t e g o r i e s , themes, and c o n c e p t s a r i s i n g from t h e d a t a , and t h u s r e f l e c -t i v e o f t h e group's p e r s p e c t i v e . The p u r p o s e of t h e c h a p t e r has been t o d e s c r i b e t h e p a r t i c i p a n t s ' m e d i c a t i o n - t a k i n g b e h a v i o r s and t h e i r e x p l a n -a t i o n s f o r t h o s e b e h a v i o r s w i t h i n t h e c o n t e x t of t h e i r e v e r y d a y l i f e . T h i s c h a p t e r has p r e s e n t e d m e d i c a t i o n - t a k i n g as a complex b e h a v i o r , w i t h many v a r i e d i n f l u e n c e s a t work i n d e t e r m i n i n g t h a t b e h a v i o r . I t was n o t t h e p u r p o s e o f t h i s s t u d y t o p r e s e n t a r i g o r o u s t h e o r y f o r p r e d i c t i n g 107 why schizophrenic clients do or do not take medication. The value of the descriptive data presented in this chapter l i e s in demonstrating the impor-tance of understanding a client's perspective towards his/her medication-taking. The data presented in this chapter also provides a basis for the discussion of compliance theories in the following chapter. 108 CHAPTER V: DISCUSSION OF RESEARCH FINDINGS INTRODUCTION T h i s c h a p t e r w i l l d i s c u s s t h e c o m p l i a n c 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 Two, v i s a v i s t h e p a r t i c i p a n t s ' a c c o u n t s p r e s e n t e d i n Chapter F o u r . As s t a t e d i n C h a p t e r One, t h e s t u d y ' s i n t e n t i s t o a p p r o a c h the e x i s t i n g r e s e a r c h and l i t e r a t u r e c o n c e r n i n g n o n - c o m p l i a n c e i n an e x p l a n a t o r y way; s u p p o r t i n g o r q u e s t i o n i n g t h e v a r i o u s proposed f a c t o r s assumed r e l e v a n t t o s c h i z o p h r e n i c c l i e n t s ' m e d i c a t i o n - t a k i n g . T h i s s t u d y i s n o t i n t e n d e d t o d e v e l o p a t h e o r y of c o m p l i a n c e by q u a n t i f y i n g o r o r g a n i z i n g r e l a t i o n s h i p s amongst v a r i a b l e s t o p r e d i c t com-p l i a n c e . A l t h o u g h comparisons w i l l be drawn between t h e r e s e a r c h d a t a and e x i s t i n g s t u d i e s , t h i s d i s c u s s i o n o f r e s e a r c h f i n d i n g s cannot d i r e c t l y s u p p o r t o r r e f u t e e x i s t i n g t h e o r i e s of c o m p l i a n c e . These t h e o r i e s must be t e s t e d on t h e b a s i s of s t u d i e s d e s i g n e d f o r t h a t p u r p o s e . T h i s r e -s e a r c h i s i n t e n d e d t o p r o v i d e a n o t h e r p e r s p e c t i v e , t h a t of t h e c l i e n t , w h i c h would be u s e f u l i n c o n c e p t u a l i z i n g t h e phenomenon "compliance;? 1-, What r e s e a r c h w i l l l e a d t o t h e " b e s t " u n d e r s t a n d i n g of c o m p l i a n c e ? R i s t (1979) s t a t e s i n h i s d i s c u s s i o n o f q u a n t i t a t i v e and q u a l i t a t i v e r e s e a r c h " i f each a p p r o a c h does p r o v i d e a p e r s p e c t i v e w h i c h i s t h e m i r r o r - o p p o s i t e of t h e o t h e r , t h e c r e a t i v e e f f o r t becomes one of t r y i n g t o f i n d ways of t a k i n g t h e s e p a r t i a l images of r e a l i t y and p i e c i n g them i n t o a new o r i e n -t a t i o n o r p e r s p e c t i v e " ( R i s t 1979, p. 2 1 ) . I n t h e s p i r i t o f such c r e a t i v e e f f o r t s , t h i s c h a p t e r i s aimed a t p r o v i d i n g a g r e a t e r u n d e r s t a n d i n g o f c o m p l i a n c e . 109 DISCUSSION OF THE COMPLIANCE LITERATURE The f i r s t question to be raised i s whether the terms "compliance^" and "non-compliance" are i n fac t meaningful and u s e f u l . These terms represent the r e a l i t y of medication-taking as something that some patients do and others do not. I t i s assumed i n many compliance theories that those who take medication may be separated from those who do not on the basis of c e r t a i n f a c t o r s , such as the i l l n e s s , the regime, t h e i r health b e l i e f s , or the i n t e r a c t i o n with the physician. Those studies which adopted the c l i e n t ' s perspective did not necessar i l y share t h i s perspective towards medication-taking. Based on the data gathered i n t h i s study, the usefulness of categor-i z i n g those c l i e n t s on medication as compilers or non-compliers i s ques-tionable. Although a l l of the study p a r t i c i p a n t s were currently taking medication (hence compilers), a l l had stopped or alte r e d medications i n the past (hence non-compliers). Thus, i n order to incorporate t h i s data, one would have to see compliance as s i t u a t i o n a l , not an enduring character-i s t i c . But what of the various a l t e r a t i o n s i n medication-taking practises dependent on d a i l y circumstances? Depending on the o p e r a t i o n a l i z a t i o n of compliance, for example, whether i t i s defined as taking a l l or some of the prescribed medication, the same c l i e n t s might alternate d a i l y between compliance and non-compliance. As w e l l , these patients, adjust-ing t h e i r medications according to what they think to be proper medica-tion-taking procedures, might be bewildered at the possible i n s i n u a t i o n that they are not taking medication as prescribed. The concept "compliance" does not accurately represent the medica-tion-taking process f o r these c l i e n t s , nor probably others, who are l i v i n g with medication-taking on an on-going b a s i s . The pa r t i c i p a n t s experienced 110 changes o v e r t i m e i n t h e i r p e r s p e c t i v e s towards m e d i c a t i o n - t a k i n g . Some became more committed t o t a k i n g m e d i c a t i o n and o t h e r s d i d more e x p e r i m e n t a -t i o n . R e g a r d l e s s o f t h e commitment t o m e d i c a t i o n , some a l t e r a t i o n s o c c u r r e d . The word " c o m p l i a n c e " can be seen as r e p r e s e n t i n g an o n - g o i n g p r o c e s s , i n v o l v i n g u n c e r t a i n t y and d e c i s i o n - m a k i n g , i n w h i c h m e d i c a t i o n s a r e s t o p p e d , s t a r t e d , f o r g o t t e n , and a l t e r e d , as w e l l as t a k e n as p r e -s c r i b e d . As w e l l , t h e term " c o m p l i a n c e , " ' d e f i n e d p r e v i o u s l y as t h e e x t e n t t o w h i c h a p a t i e n t ' s b e h a v i o r c o i n c i d e s w i t h m e d i c a l o r h e a l t h a d v i c e (Haynes, T a y l o r , and S a c k e t t 1979, p. 2) emphasizes t h e p r a c t i t i o n e r -p a t i e n t r e l a t i o n s h i p i n m e d i c a t i o n - t a k i n g b e h a v i o r . The s t u d y d a t a s u p p o r t s t h e i m p o r t a n c e o f t h i s r e l a t i o n s h i p and r e c o g n i z e s t h a t p r e s c r i b e d m e d i c a -t i o n - t a k i n g by n e c e s s i t y must i n v o l v e t h a t r e l a t i o n s h i p . However, m e d i c a -t i o n - t a k i n g i s p r e s e n t e d as a complex b e h a v i o r . The emphasis on c o m p l i a n c e tends t o emphasize one f e a t u r e o f m e d i c a t i o n - t a k i n g , w h i l e o v e r l o o k i n g o t h e r i m p o r t a n t a s p e c t s , thus a l t e r i n g our p e r c e p t i o n o f t h e phenomenon " m e d i c a t i o n - t a k i n g . " The l i t e r a t u r e on c o m p l i a n c e w i l l now be d i s c u s s e d f o l l o w i n g t h e same o r g a n i z a t i o n as t h a t used i n C h a p t e r Two: a) s t u d i e s d e t e r m i n i n g r a t e s and f a c t o r s a s s o c i a t e d w i t h c o m p l i a n c e , b) t h e H e a l t h B e l i e f M o d e l , c) th e c l i n i c i a n - p a t i e n t r e l a t i o n s h i p , d) t h e c l i e n t ' s p e r s p e c t i v e , and e) combined approaches t o c o m p l i a n c e . A. S t u d i e s D e t e r m i n i n g R a t e s and F a c t o r s A s s o c i a t e d w i t h Compliance The p r e v i o u s comments about t h e n a t u r e o f c o m p l i a n c e i n d i c a t e d t h a t c o m p l i a n c e i s a p r o c e s s w h i c h i s m i s r e p r e s e n t e d by t h e c a t e g o r i z i n g of i n d i v i d u a l s as c o m p l i a n t and n o n - c o m p l i a n t . T h i s u n d e r s t a n d i n g h e l p s I l l to account for the variance i n rates and the lack of u t i l i t y of such variables as demographic c h a r a c t e r i s t i c s . The patient's l i v i n g s i t u a t i o n — l i v i n g alone, poverty, unemploy-ment, and family i n s t a b i l i t y — has been rel a t e d to compliance. The i n -fluence of the family, both p o s i t i v e l y and negatively, was a feature of the p a r t i c i p a n t s ' accounts of t h e i r medication-taking. Another feature of the accounts, also related to the patient's l i v i n g s i t u a t i o n , was the evaluation of treatment, including medication, i n the context of "how l i f e i s going." If the medications are perceived to have contributed to-wards a better l i f e , they w i l l be more favorably evaluated than i f l i f e i s seen to be going poorly. L i f e circumstance, such as poverty, may be seen by the medication-taker as having more impact on the l i f e s i t u a t i o n than the medication, reducing the s i g n i f i c a n c e of the medication. Chronic i l l n e s s , e s p e c i a l l y when treatment i s prolonged, prophylactic, or suppressive i n nature, and when the consequences of stopping therapy may be delayed, i s associated with higher non-compliance rates (Blackwell 1973a). The research data presented i n t h i s study provides some i n t e r e s t -ing r e l a t i o n s h i p s to the above statement. F i r s t l y , i n comparing the short-term and long-term c l i e n t groups, there was the i m p l i c a t i o n that long-term medication required a s h i f t i n expectations concerning the nature and the time-frame associated with medication-taking. Time on medication could increase the commitment on the part of the p a r t i c i p a n t s as well as increase s e l f - r e g u l a t i o n . Secondly, i t appeared that many par t i c i p a n t s did see the medication as prophylactic Jor suppressive, as i n preventing a recurrence of the i l l n e s s , but s t i l l took the medications. Regardless of how p a r t i c i p a n t s saw t h e i r need for medication, they approached med-ica t i o n - t a k i n g with ambivalence and uncertainty, expressing the wish to 112 do without medication i f possible. T h i r d l y , many p a r t i c i p a n t s did acknow-ledge the "longer-acting" nature of the anti-psychotic medications and t h i s knowledge did seem d i r e c t l y r e l a t e d to " t e s t " stoppages and missing or f o r g e t t i n g doses with less concern, but not necess a r i l y medication stoppage. The f i n d i n g that p s y c h i a t r i c i l l n e s s i s associated with higher non-compliance i s d i f f i c u l t to address as t h i s study included only p s y c h i a t r i c c l i e n t s . Without addressing the c l i n i c a l features of mental i l l n e s s , one possible factor might be that the moral implications of mental i l l n e s s and the psychotropic medications are more devaluing than those of other i l l -nesses and medications. The complexity of the regimen appeared to be a factor for p a r t i c i -pants as the middle of the day doses were most often missed due to other a c t i v i t i e s . As p a r t i c i p a n t s r e f e r r e d to medication-taking as a habit or system w i t h i n t h e i r l i v e s , the le s s change and the l e a s t complex medica-tion-taking patterns seemed to be adhered to most e a s i l y . P a r t i c i p a n t s expressed the wish for the l e a s t medication possible — a desire seen to be based on both p r a c t i c a l and moral reasons. The health care s e t t i n g i s said to influence compliance. As a l l the p a r t i c i p a n t s were involved i n b a s i c a l l y the same type of health care d e l i v e r y system, comparative data i s not a v a i l a b l e . The notion that extended supervision increases compliance i s consistent with the p a r t i c i -pants' accounts. Some p a r t i c i p a n t s stopped medication when i n infrequent contact with a doctor or an agency. However, considering the importance of the nature of the r e l a t i o n s h i p with the therapist, the q u a l i t y as well as the quantity of contact must be considered. The previous discussion r e l a t e s to general compliance research. 113 Those s t u d i e s c o n c e r n e d w i t h m e d i c a t i o n - t a k i n g i n s c h i z o p h r e n i c c l i e n t p o p u l a t i o n s w i l l now be examined. P s y c h i a t r i c symptoms, such as p a r a n o i d i d e a t i o n , l a c k of m o t i v a t i o n , and the p r e s e n c e of g r a n d i o s i t y v e r s u s d e p r e s s i o n and a n x i e t y have been i n v o k e d as e x p l a n a t i o n s f o r n o n - c o m p l i a n c e . T h i s s t u d y d i d not c a t e g o r i z e p a r t i c i p a n t s i n terms of symptomatology and the p a r t i c i p a n t s r a r e l y used t h e s e c o n c e p t s i n e x p l a i n i n g t h e v a r i a t i o n s i n t h e i r m e d i c a t i o n - t a k i n g . Thus i t i s d i f f i c u l t t o comment on t h e i m p o r t a n c e o f t h e s e symptoms. The r e s e a r c h e r r e c o g n i z e s t h a t t h e r e c o u l d be. c o n s i d e r a b l e d e b a t e around t h i s i s s u e as many c l i n i c i a n s m i g ht t h i n k i t i m p e r a t i v e t o c o n s i d e r t h e s e symptoms. The s i d e e f f e c t s o f m e d i c a t i o n a r e f r e q u e n t l y r e l a t e d t o n o n - c o m p l i a n c e (Michaux 1961; Van P u t t e n 1 9 7 4 ) . E x p e r i e n c e s w i t h s i d e e f f e c t s of m e d i c a -t i o n were p r e s e n t e d i n t h e p a r t i c i p a n t s ' a c c o u n t s . The t h e r a p i s t ' s r e a c t i o n t o t h e s i d e e f f e c t i n h e l p i n g the p a t i e n t o b t a i n r e l i e f was an i m p o r t a n t a s p e c t o f t h e s e e x p e r i e n c e s . The meaning of t h e s i d e e f f e c t t o the p a r t i c i p a n t was a l s o i m p o r t a n t — t h e s i g n i f i c a n c e of t h e p a r t i c u l a r s i d e e f f e c t t o t h e p a r t i c i p a n t ' s d a i l y l i f e and how t h e s i d e e f f e c t i s i n t e r p r e t e d . F o r example, s i d e e f f e c t s were seen as an i n d i c a t i o n t h a t t h e m e d i c a t i o n "doesn't agree w i t h me1." P a r t i c i p a n t s c o n t i n u e d t o t a k e m e d i c a t i o n s d e s p i t e b o t h p a s t and p r e s e n t s i d e e f f e c t s . E m p h a s i z i n g one p a r t i c u l a r v a r i a b l e , s u c h as s i d e e f f e c t s , seems to be a d i s t o r t i o n o f t h e r e a l i t y p r e s e n t e d by t h e p a r t i c i p a n t s . M e d i c a t i o n - t a k i n g i s a com-p l e x b e h a v i o r w i t h no s i m p l i s i t i c a nswers, such as s i d e e f f e c t s , t o e x p l a i n p a t t e r n s . The f i n a l e x p l a n a t i o n s o f c o m p l i a n c e b e h a v i o r t o be d i s c u s s e d i n t h i s s e c t i o n a r e t h o s e c i t e d by Serban and Thomas (1974) . T h e i r s t u d y 114 s t a t e s : " f u r t h e r q u e s t i o n i n g i n o r d e r t o d e t e r m i n e i f t h e a t t i t u d e was due t o f a i l u r e t o u n d e r s t a n d t h e i m p o r t a n c e o f m e d i c a t i o n r e v e a l e d t h a t b o t h a c u t e and c h r o n i c p a t i e n t s would d i s c o n t i n u e m e d i c a t i o n i f : t h e y f e l t t h e y no l o n g e r needed i t , t a k i n g m e d i c a t i o n s i n t e r f e r e d w i t h t h e i r a c t i v i t i e s , t a k i n g m e d i c a t i o n made them f e e l d i f f e r e n t f r o m o t h e r s , and th e y f e l t no d i f f e r e n c e i n t h e i r c o n d i t i o n a f t e r f o r g e t t i n g t o t a k e m e d i c a -t i o n " ( S e r b a n and Thomas 1974, p. 99 2 ) . The w o r d i n g o f t h e above s t a t e -ment, u s i n g t h e word " i f , " r a i s e s doubt as t o how t h i s i n f o r m a t i o n was o b t a i n e d . That i s , were t h e p a t i e n t s asked "why" th e y d i s c o n t i n u e d t h e i r m e d i c a t i o n s o r " i f " t h e y would d i s c o n t i n u e m e d i c a t i o n s under t h e above mentioned c i r c u m s t a n c e s ? L o g i c a l l y , p a t i e n t s would d i s c o n t i n u e m e d i c a -t i o n s " i f t h e y f e l t t h e y no l o n g e r needed them," as w e l l as " i f t a k i n g m e d i c a t i o n s i n t e r f e r e d w i t h t h e i r a c t i v i t i e s . " The word " i n t e r f e r e " i m p l i e s h i n d e r o r o b s t r u c t (Webster 1976, p. 6 0 2). The s t u d y p a r t i c i p a n t s acknowledged t h a t m e d i c a t i o n - t a k i n g was something t h a t was a d j u s t e d and i n t e g r a t e d w i t h i n one's d a i l y l i f e , i n c l u d i n g t h e s p e c i a l c i r c u m s t a n c e s w h i c h were managed. Perhaps " i n t e r f e r e " connoted problems w h i c h c o u l d n o t be s o l v e d by such a d j u s t m e n t and th u s would l e a d t o d i s c o n t i n u a t i o n o f m e d i c a t i o n . The n o t i o n t h a t t a k i n g m e d i c a t i o n made them f e e l d i f f e r e n t from o t h e r s i s a theme c i t e d by the p a r t i c i p a n t s i n t h i s s t u d y . T h i s theme i n f l u e n c e d m e d i c a t i o n - t a k i n g b e h a v i o r . The p a r t i c i p a n t s i n t h i s s t u d y c o n t i n u e d t o t a k e m e d i c a t i o n d e s p i t e t h e i r c o n c e r n s about " n o r m a l i t y . " S i m i l a r l y , p a r t i c i p a n t s i n t h i s s t u d y n o t e d b o t h t h e p r e v e n t a t i v e and l o n g -a c t i n g n a t u r e o f m e d i c a t i o n and p r o b a b l y would acknowledge t h a t " t h e y f e l t no d i f f e r e n c e i n t h e i r c o n d i t i o n a f t e r f o r g e t t i n g t o t a k e m e d i c a -t i o n " ( S e r b a n and Thomas 1974, p. 992). A l t h o u g h t h i s knowledge appeared 115 to contribute to the s e l f - r e g u l a t i o n e f f o r t s of the p a r t i c i p a n t s , the p a r t i c i p a n t s were taking medication on an on-going basis despite t h i s knowledge. B. The Health B e l i e f Model The Health B e l i e f Model i s based on the presumed r e l a t i o n s h i p between the i n d i v i d u a l ' s subjective state and health behavior. Hence, one might expect to i d e n t i f y s i m i l a r i t i e s i n the p a r t i c i p a n t s ' accounts of medica-tion-taking and the proposed v a r i a b l e s i n the Health B e l i e f Model. There i s correspondence between such variables as perceived s u s c e p t i b i l i t y and perceived seriousness and the p a r t i c i p a n t s ' notions concerning t h e i r i l l n e s s . Likewise correspondence i s apparent between the perceived bene-f i t s of taking action and the p a r t i c i p a n t s ' evaluations of the reasons why they need medication, t h e i r concerns about stopping medication et cetera. In f a c t , i t might be possible to translate a l l of the p a r t i c i p a n t s ' accounts into the v a r i a b l e s mentioned i n t h i s model. However, the r e -searcher questions the usefulness of t h i s task, and i n so doing, high-l i g h t s the problems of such "subjective" models as the Health B e l i e f Model. The i d e a l of " t r a n s l a t i n g " from the p a r t i c i p a n t s ' accounts to the Health B e l i e f Model i s important. Although the Health B e l i e f Model i s concerned with patient's subjective world, the model uses " s c i e n t i f i c " concepts and terminology to represent the patient's world. Thus the categories are not meaningful to patients without " t r a n s l a t i o n " and one questions the way that the patients' perceptions would be obtained. Further, these categories have been quantified i n order that values could be assigned to the categories to use for the prediction.of health behavior and t e s t i n g of the theory. This q u a n t i f i c a t i o n represents 116 f u r t h e r d i s t o r t i o n o f t h e c l i e n t s ' p e r c e p t i o n s , w h i c h , as p r e s e n t e d i n t h e p a r t i c i p a n t s ' a c c o u n t s , do n o t e x i s t i n t h e form o f "yes (" and "no" c a t e g o r i e s f o r q u a n t i f i c a t i o n . I f , as s u g g e s t e d by t h e p a r t i c i p a n t s ' a c c o u n t s , t h e p r o c e s s o f t a k i n g m e d i c a t i o n i s c h a r a c t e r i z e d by u n c e r t a i n t y , a m b i v a l e n c e , and c o n t i n u e d d e c i s i o n - m a k i n g , t h e H e a l t h B e l i e f Model would c a p t u r e o n l y one moment i n t i m e , t h u s n o t a c c u r a t e l y r e p r e s e n t i n g t h e c l i e n t s ' c h a n g i n g i d e a s . S i m i l a r c o n c e r n s t o t h o s e d i s c u s s e d above would a l s o a p p l y t o t h e s t u d y c o n d u c t e d by L i n , S p i g a , and F o r t s c h (1979) w h i c h r e l a t e d i n s i g h t and adherence t o m e d i c a t i o n - t a k i n g i n c h r o n i c s c h i z o p h r e n i a . The d i f f i -c u l t i e s i n h e r e n t i n t h e way t h e s e models have used s u b j e c t i v e d a t a may acc o u n t f o r t h e i r l a c k o f s u c c e s s i n d e m o n s t r a t i n g s i g n i f i c a n t c o r r e l a t i o n s between the v a r i a b l e s and a d h e r e n c e . K a s l (1974) p r o p o s e d m o d i f i c a t i o n s t o t h e H e a l t h B e l i e f Model to a c c o u n t f o r c h r o n i c i l l n e s s . He s u g g e s t e d t h a t c h r o n i c i l l n e s s i s c o n s i s -t e n t w i t h an " a t - r i s k " s t a t u s , r a t h e r t h a n t h e s i c k - r o l e . The r e s e a r c h d a t a i n t h i s s t u d y s u p p o r t s t h i s r e c o n s i d e r a t i o n o f c h r o n i c i l l n e s s . The p a r t i c i p a n t s d e s c r i b e d t h e m s e l v e s as n e i t h e r s i c k nor w e l l , and t h e y tended t o e n d o r s e m e d i c a t i o n - t a k i n g as p r e v e n t i n g r e c u r r e n c e s o f i l l n e s s r a t h e r t h a n as a c t i v e t r e a t m e n t . I l l n e s s management and l i f e management became so i n t e r t w i n e d t h a t s i c k - r o l e does not appear t o be t h e a p p r o p r i a t e c o n c e p t . K a s l a l s o s u g g e s t e d enlargement o f t h e H e a l t h B e l i e f Model t o i n c l u d e t h e c o n c e p t s o f l a y r e f e r r a l systems; s o c i a l s u p p o r t ; t h e i n -f l u e n c e o f t h e d o c t o r - p a t i e n t r e l a t i o n s h i p ; and s o c i o c u l t u r a l l y d e t e r m i n e d e x p e c t a t i o n s o f p a i n and symptoms, h e a l t h and i l l n e s s , and t h e s i c k - r o l e . The p a r t i c i p a n t s ' a c c o u n t s i n c l u d e d t h e i n f l u e n c e o f o t h e r s : f e l l o w p a t i e n t s on m e d i c a t i o n s , f r i e n d s , and f a m i l y , as w e l l as t h e t h e r a p i s t -117 p a t i e n t r e l a t i o n s h i p . C l i e n t s ' p e r c e p t i o n s o f s u c h t h i n g s as t h e i r i l l n e s and t h e i r s o c i a l r o l e have t o be seen w i t h i n a s o c i o c u l t u r a l c o n t e x t . I n summary, a l t h o u g h s u p p o r t i n g K a s l ' s proposed m o d i f i c a t i o n s t o t h e H e a l t h B e l i e f M o d e l , t h e r e s e a r c h e r q u e s t i o n e d the p r e s e n t form and method of u s i n g t h i s m o del, f o r t h e r e a s o n s w h i c h were d i s c u s s e d . C. The C l i n i c i a n - P a t i e n t R e l a t i o n s h i p The l i t e r a t u r e r e v i e w i d e n t i f i e d s e v e r a l p e r s p e c t i v e s w h i c h have been used i n the s t u d y o f c o m p l i a n c e and t h e c l i n i c i a n - p a t i e n t r e l a t i o n s h i p : r o l e e x p e c t a t i o n s and r o l e f u l f i l l m e n t i n t h e management of t h e p r o b l e m -s o l v i n g i n t e r a c t i o n ( D a v i s 1968 and 1971); p a t i e n t s a t i s f a c t i o n and the p h y s i c i a n ' s a b i l i t y to communicate i n a p e r s o n a l i z e d way w i t h p a t i e n t s ( K o r s c h , G o z z i , and V i d a 1978; Freemon, N e g r e t e , D a v i s , and K o r s c h 1971); t h e p h y s i c i a n ' s i n s t r u c t i o n a l and m o t i v a t i o n a l e f f o r t ( S v a r s t a d 1977); and t h e p h y s i c i a n ' s a b i l i t y t o n e g o t i a t e a t r e a t m e n t p l a n s u i t a b l e to t h e c l i e n t ( E i s e n t h a l e t a l 1979) . The above approaches w i l l be d i s c u s s e d i n r e l a t i o n t o t h e r e s e a r c h d a t a g a t h e r e d i n t h i s s t u d y . The n o t i o n t h a t c l i e n t s have r o l e e x p e c t a t i o n s o f b o t h t h e i r own and t h e t h e r a p i s t ' s b e h a v i o r i s s u p p o r t e d by t h e s t u d y d a t a . The p a t i e n t ' r o l e was d e s c r i b e d as p r e d o m i n a n t l y p a s s i v e w i t h e x p e c t a t i o n s t h a t t h e d o c t o r / t h e r a p i s t would be a c t i v e i n terms of g i v i n g i n f o r m a t i o n and making d e c i s i o n s . However, t h e p a r t i c i p a n t s ' p a s s i v i t y was a l s o accompanied by an e x p e c t a t i o n t h a t t h e i r c o n c e r n s would be h e a r d and a c t e d upon. P a r t i c i p a n t s v a l u e d b o t h t h e i r own and o t h e r s ' e x p e r i e n c e s i n making d e c i s i o n s about m e d i c a t i o n s . Thus, a l t h o u g h a u t h o r i t y was i n v e s t e d i n t h e d o c t o r / t h e r a p i s t , t h e r e were b o t h l i m i t a t i o n s and o b l i g a t i o n s a t t a c h e d t o t h i s a u t h o r i t y . The complementary n a t u r e o f r o l e e x p e c t a t i o n s r e q u i r e s f u r t h e r 118 study of both the c l i e n t s ' and the t h e r a p i s t s ' perceptions. The p a r t i c i p a n t s ' comments about the doctor's a t t i t u d e support pre-vious research concerning the importance of both patient s a t i s f a c t i o n and the a b i l i t y of the physician to communicate i n a personalized way. The physician's i n s t r u c t i o n a l e f f o r t i s of p a r t i c u l a r i n t e r e s t , due to the present emphasis on patient education. The study p a r t i c i p a n t s acknowledged desires for more information about medication, although the kind of information desired v a r i e d among p a r t i c i p a n t s . The importance of the p a r t i c i p a n t s ' knowledge base i n the formation of t h e i r medication-taking p r a c t i s e s i s also c l e a r . For example, notions re the proper schedul-ing of medication w i l l influence medication-taking patterns. Some inferences about the usefulness of patient teaching can be drawn: the c l i e n t needs to be a c t i v e l y involved i n determining the i n -s t r u c t i o n a l content, and a c t u a l p r a c t i s e s or behaviors need to be discussed rather than d i d a c t i c presentation of information as information can be used by the c l i e n t i n unpredictable ways. It must also be recognized that c l i e n t s w i l l have th e i r own perspectives on t h e i r medication-taking, both on an i n d i v i d u a l l e v e l and on a c u l t u r a l l e v e l . Although valuing professional knowledge, c l i e n t s w i l l make th e i r own decisions i n regards to medication-taking. Health teaching programs tend to focus on the c l i e n t s ' knowledge of medication, what might be termed the technical aspects of medication. Such issues as the moral implications might not be acknowledged, or i f acknowledged, d i s p e l l e d by the professional ideology towards mental i l l -ness. For example, pr o f e s s i o n a l ideology might claim that mental i l l n e s s is. l i k e any other i l l n e s s , which contradicts the c l i e n t s ' perceived s o c i a l r e a l i t y . Broadened course content to include such issues as moral i m p l i -119 cations would be more r e f l e c t i v e of the c l i e n t s ' perspective on medication-taking . The negotiated approach i n c l i n i c i a n - p a t i e n t r e l a t i o n s h i p s assumes that patients have a d i s t i n c t perspective regarding t h e i r problems and treatment. This study i d e n t i f i e d the p a r t i c i p a n t s ' perspectives i n r e l a -t i o n to t h e i r medication-taking behavior and therefore supports the basis of the negotiated approach. As w e l l , the study data supports the need for the therapist and patient to work together i n developing the pattern of medication-taking. In summary, i t appears that a l l of the research perspectives used i n understanding the c l i n i c i a n - p a t i e n t r e l a t i o n s h i p and compliance have some v a l i d i t y i n terms of t h i s study's fi n d i n g s . A conceptualization of the therapist-patient r e l a t i o n s h i p to include a l l of these perspectives would be u s e f u l . Although t h i s r e l a t i o n s h i p i s important to compliance, the study data indicated other aspects of the p a r t i c i p a n t s ' perspective to-ward medication-taking which should also be considered i n understanding compliance. Compliance i s a complex behavior which cannot be conceptu-a l i z e d i n terms of one v a r i a b l e such as the therapist-patient r e l a t i o n s h i p . In considering the study data and the previous research concerning the c l i n i c i a n - p a t i e n t r e l a t i o n s h i p , several questions became apparent to the researcher. 1. Is there a diff e r e n c e i n the e f f e c t of the doctor-patient r e l a -tionship versus the non-physician therapist-patient r e l a t i o n s h i p on medica-tion-taking? Most of the reported research studied physicians. This study did not d i f f e r e n t i a t e the p a r t i c i p a n t s ' comments as related to doctors or other therapists; the comments were grouped into the t h e r a p i s t -patient r e l a t i o n s h i p . The study p a r t i c i p a n t s were involved with both a 120 non-physician therapist and a doctor. How these p a r t i c i p a n t s , and patients i n other s e t t i n g s , perceive these two groups i n r e l a t i o n to t h e i r medication-taking needs further study. 2. Is there a difference i n the c l i n i c i a n - p a t i e n t r e l a t i o n s h i p i n acute versus chronic i l l n e s s ? Research has tended to use acute i l l n e s s s i t u a t i o n s f o r the study of r e l a t i o n s h i p s and compliance. This study i n -cluded both short-term and long-term i l l n e s s p a r t i c i p a n t s . There was some evidence to indicate that as patients' perspectives towards their i l l n e s s and treatment change, t h e i r perspectives towards the care-givers also change. 3. Are there unique features of i l l n e s s and treatment experiences which lead to unique patient-therapist relationships? In p a r t i c u l a r , are there unique features of schizophrenia which contributed to the t h e r a p i s t -patient r e l a t i o n s h i p described i n t h i s study? For example, i t appeared that the importance of professionals as sources of information and advice might be rel a t e d to l e s s information-sharing with others such as friends than would be the case with more common and/or l e s s stigmatized i l l n e s s e s . D. The C l i e n t ' s Perspective The previously reviewed research which had adopted the c l i e n t ' s perspective i l l u s t r a t e d several ways i n which t h i s perspective could be used i n understanding health behaviors, including medication-taking. This study i s a further example of the usefulness of t h i s approach. Rather than compare t h i s study to other studies within t h i s perspective, i t would seem b e n e f i c i a l to b r i e f l y describe how the researcher has come to under-stand schizophrenic c l i e n t s ' medication-taking, as presented by t h i s study's p a r t i c i p a n t s . The medication-taking pattern i s determined by the c l i e n t ' s under-121 standing of the prescribed pattern, as well as the a c t u a l i t i e s of everyday l i v i n g such as f o r g e t t i n g , and going,out." Variations in^everyday p r a c t i s e are based on the p a r t i c i p a n t s ' notions about the medications and proper medication-taking. These notions are based on information from a v a r i e t y of sources: therapists, other medication-takers, the p a r t i c i -pants' observations of p r a c t i s e s such as h o s p i t a l p r a c t i c e s , and t h e i r own sense making based on t h e i r own experiences, and interpreted within t h e i r own s o c i o - c u l t u r a l framework. The therapist-patient r e l a t i o n s h i p contributes to the medication-taking pattern, as<do the moral implications of being on medication. Medication-taking i s constantly under review, as c l i e n t s are not c e r t a i n about what i s t h e i r best course of action for t h e i r s i t u a t i o n . Their con-tinuing evaluations of i l l n e s s and treatment, as experienced i n t h e i r everyday l i f e , include evaluation of the r e l a t i o n s h i p between medication and t h e i r i l l n e s s . I l l n e s s management i s a s o c i a l process i n which behaviors, such as taking medications, are evaluated. This understanding of medication-taking i s generally consistent with that of the other " c l i e n t perspective" studies reviewed. The notions that s c i e n t i f i c medicine and patients represent two d i s t i n c t i d e o l o g i c a l systems w i l l be explored further. P s y c h i a t r i c theory provides a framework for viewing mental i l l n e s s , s p e c i f i c a l l y schizophrenia. In so doing, t h i s theory describes ways of organizing the c l i e n t s ' accounts, for example, p s y c h i a t r i c assessments. Likewise, p s y c h i a t r i c theory provides explanations of c l i e n t behavior, i n -cluding medication-taking. As shown by the study p a r t i c i p a n t s , c l i e n t s have t h e i r own frameworks for organizing t h e i r accounts, as well as explan-ations for t h e i r own behavior. These frameworks can be seen as competing 122 ways o f o r g a n i z i n g d a t a and a r e a l s o r e f l e c t i v e o f d i f f e r e n t v a l u e systems of h e a l t h and i l l n e s s , e t c . ( K l e i n m a n 1977). The degree of c o r r e s p o n d e n c e between t h e s e two systems can v a r y g r e a t l y . These i d e o l o g i c a l d i f f e r e n c e s a r e t r u e o f o t h e r a r e a s o f m e d i c a l p r a c t i s e as w e l l as p s y c h i a t r y , b u t . t h e i s s u e s o f c l i e n t r a t i o n a l i t y and competency make t h e s e i s s u e s even more d i f f i c u l t i n p s y c h i a t r y . How a r e t h e s e i d e o l o g i c a l d i f f e r e n c e s r e s o l v e d ? T h i s q u e s t i o n p r e s e n t s q u e s t i o n s a t b o t h p r a c t i c a l and b r o a d e r e t h i c a l l e v e l s . The p r a c t i c a l q u e s t i o n s r e l a t e t o t h e n a t u r e o f t h e p a t i e n t - t h e r a p i s t r e l a t i o n s h i p , s u c h as t h e v a l u i n g o f i n f o r m a t i o n and t h e s h a r i n g of d e c i s i o n - m a k i n g . The b r o a d e r e t h i c a l i s s u e s r e l a t e t o t h e f a c t t h a t t h e s c i e n t i f i c m e d i c a l i d e o l o g y r e f l e c t s t h e v a l u e system o f t h e dominant c u l t u r e i n o u r s o c i e t y and t h u s i s more p o w e r f u l t h a n t h e p a t i e n t s ' i d e o l o g i c a l s y s t e m ( K l e i n m a n 1977) . T h i s r a i s e s q u e s t i o n s about t h e r i g h t s o f a dominant c u l t u r e t o impose i t s e l f on a n o t h e r c u l t u r e , and t h e danger of s c i e n t i f i c m e d i c i n e a c t i n g upon i t s i d e o l o g y as i f i t was " e t e r n a l l y r i g h t " and n o t a c o n s t r u c t i o n o f t h e w o r l d . As b o t h s c i e n t i f i c m e d i c i n e and p a t i e n t s o f f e r u s e f u l p e r s p e c t i v e s , t h e r e i s a need t o r e c o g -n i z e and u t i l i z e b o t h p e r s p e c t i v e s . E. Combined/Approaches t o Co m p l i a n c e The combined approaches t o c o m p l i a n c e r e c o g n i z e t h e c o m p l e x i t y o f a h e a l t h b e h a v i o r s u c h as m e d i c a t i o n - t a k i n g . The r e s e a r c h d a t a g a t h e r e d i n t h i s s t u d y l e n d s s u p p o r t t o two combined approaches i n p a r t i c u l a r , a l t h o u g h t h i s s u p p o r t i s n o t t o be i n t e r p r e t e d as t o t a l endorsement of t h e s e two a p p r o a c h e s . C h r i s t e n s e n ' s (1978) model i s s u p p o r t e d f o r i t s r e c o g n i t i o n of the p r o c e s s i n v o l v e d i n c o m p l i a n t b e h a v i o r . "A major d i s t i n c t i o n o f t h e above 123 model i s t h e e x p l i c i t r e c o g n i t i o n o f c o m p l i a n c e b e h a v i o r as a dynamic p r o -c e s s i n w h i c h change o c c u r s as a r e s u l t o f new i n f o r m a t i o n and e x p e r i e n c e g a i n e d by t h e p a t i e n t " ( C h r i s t e n s e n 1978, p. 1 8 4 ) . J e n k i n s ' (1979) model i s t h e b r o a d e s t c o n c e p t u a l model and thus i n c l u d e s t h e many a s p e c t s o f h e a l t h b e h a v i o r w h i c h were i d e n t i f i e d w i t h i n t h i s s t u d y . However, t h e aim o f t h e J e n k i n s ' model i s t o p r o v i d e a d i a g n o s i s and t r e a t m e n t a p p r o a c h t o " u n h e a l t h y " b e h a v i o r , n o t t o u n d e r s t a n d c o m p l i a n c e as a p r o c e s s , as does t h e C h r i s t e n s e n model. Both o f t h e s e models have i n c o r p o r a t e d t h e h e a l t h b e l i e f m o d e l s , t h e p a t i e n t - p h y s i c i a n r e l a t i o n s h i p , and r e l a t i o n -s h i p s w i t h o t h e r s as f a c t o r s i n f l u e n c i n g c o m p l i a n c e and h e a l t h - r e l a t e d b e h a v i o r . DISCUSSION OF DRUG THERAPY IN SCHIZOPHRENIA A l t h o u g h t h e purpose of t h i s s t u d y was t o compare t h e p a r t i c i p a n t s ' a c c o u n t s w i t h t h e c o m p l i a n c e l i t e r a t u r e , t h e c o n t e n t p r e s e n t e d i n dru g t h e r a p y i n s c h i z o p h r e n i a w i l l be b r i e f l y d i s c u s s e d i n r e l a t i o n t o t h e a c c o u n t s . T h i s d i s c u s s i o n p r o v i d e s f u r t h e r u n d e r s t a n d i n g o f t h e phenome-non " c o m p l i a n c e " as w e l l as p r e s e n t i n g some c o n s i d e r a t i o n s f o r p s y c h i a t r i c c l i n i c i a n s . The i d e a t h a t c l i e n t s and t h e r a p i s t s d i f f e r i n t h e i r p e r s p e c t i v e s towards m e d i c a t i o n - t a k i n g has been p r e v i o u s l y d i s c u s s e d . Some of t h e s e d i f f e r e n c e s w i l l be h i g h l i g h t e d . F i r s t l y , t h e v a l u e a t t a c h e d t o m e d i c a t i o n i n terms of i t s c o n t r i b u t i o n towards t h e c l i e n t ' s " d o i n g b e t t e r " may d i f f e r . P a r t i c i p a n t s i d e n t i f i e d a s p e c t s o t h e r t h a n m e d i c a t i o n s w h i c h t h e y saw as c o n t r i b u t i n g t o t h e i r h e a l t h s t a t u s . M e d i c a t i o n s a r e c u r r e n t l y h i g h l y v a l u e d by t h e r a p i s t s ( S o s k i s and J a f f e 1979) who may p l a c e more emphasis on m e d i c a t i o n s t h a n t h e i r c l i e n t s . I n a d d i t i o n t o t h e i r b e l i e f 124 in the efficacy of medication, therapists' valuing of medication might be related to the fact that therapists have more control over medication (or at least feel they have more control) than over factors such as the client's finances, nutritional status, family situation, or other such l i f e situation circumstances. Secondly, practitioners' enthusiasm for injectable medications was not shared by the participants in this study, as was mentioned in their past experiences with medication. It would seem useful to investigate the use of injectable medications both from the perspective of practitioners and clients, especially considering the greater choice available in oral medications. Thirdly, this study suggested that short-term and long-term clients varied in their perspective towards illness and treatment. If this is the case, do practitioners appreciate this difference, or do prac-titioners see one schizophrenic episode as the beginning of a chronic i l l -ness (although this may or may not be justified)? Such different per-spectives lead to greater divergence in the client's and practitioner's view of reality in terms of ill n e s s and treatment. Although there are differences in the clients' and therapists' per-spectives, there are similarities in their perspectives as well. The participants' uncertainty concerning medication-taking and their beliefs about individual differences in -response to medication are paralleled by uncertainty on the part of the cl i n i c i a n who must decide on the efficacy of medication in general and which specific medication at what dosage. From both perspectives, medication-taking necessitates continual decision-making. How much of this uncertainty do practitioners feel comfortable expressing, as well as how much uncertainty do participants feel com-fortable accepting from practitioners? These are questions for explora-125 tion in understanding the patient-therapist relationship. Many of the participants' notions in regard to desired medication-taking, such as once-a-day dosages and t r i a l periods without medication, are in accordance with current medical notions about desired practices. The extent to which c l i n i c a l prescribing practises and the information given to patients are in accord with sc i e n t i f i c thinking in regard to drug therapy in schizophrenia is not known. Another consideration in comparing the participants' accounts to scie n t i f i c medicine is the impact of various models of etiology and treat-ment. The biological model, adopted by some participants, appeared to reduce the negative moral implications of the ill n e s s . The comparison to diabetes appeared to reduce the shame of both the illness and the medica-tion. The interaction between professional, patient, and public ideologies concerning an illness and treatment are important aspects in understand-ing health behavior. This brief discussion of similarities and differences in perspec-tives towards medication-taking highlighted some of the questions to be explored in relation to our understanding of medication-taking i n schizo-phrenia. Many other comparisons to previous research can be made by the reader. Although recognizing the need to work with the differences in perspectives between therapists and clients, the basis for a therapeutic alliance appears to be present, both on the part of the participants and from the standpoint of sc i e n t i f i c medicine. SUMMARY This chapter has discussed "compliance" as presented by both relevant literature and the participants' accounts. The participants' perspec-126 tive as developed in this study brings into question the assumptions and conclusions operative i n some compliance research and theorizing, while lending support to others. In so doing, implications for the delivery of health care and further research have been identified, for example, in relation to patient education programs. The researcher wishes to emphasize that there are many perspectives towards a phenomenon such as compliance. No perspective can be seen as "the only reality" as "reality" i s socially constructed. It i s hoped that the perspective presented by this study has led to a greater under-standing of the phenomenon "compliance." 127 CHAPTER VI: SUMMARY AND CONCLUSIONS SUMMARY OF THIS STUDY This study presented a q u a l i t a t i v e approach to the understanding of patient health behaviors, s p e c i f i c a l l y , the medication-taking behavior of schizophrenic c l i e n t s . This study d i f f e r e d from previous research by focussing on the c l i e n t s ' perspectives towards t h e i r medication-taking. Previous research had concerned i t s e l f with compliance, the extent to which patient behavior coincides with health advice. Using interview data obtained from the study p a r t i c i p a n t s , a c l i e n t ' s perspective was constructed which described both the medication-taking behavior of schizophrenic c l i e n t s and t h e i r explanations for that behavior. This construction was then compared to the conceptualizations and theories concerning compliance presented i n previous research. In so doing, new perspectives towards compliance and health behavior were suggested. The nature,of q u a l i t a t i v e research does not lend i t s e l f to d e f i n i -t i v e statements concerning the nature of s o c i a l behavior. However, i m p l i -cations for health care and suggestions for future research can be drawn from t h i s study. This study's contribution to the development of theory i n r e l a t i o n to health behavior and compliance i s i n demonstrating an al t e r n a t i v e approach from which data was gathered and to which previous research was compared. As t h i s perspective i t s e l f i s an e s s e n t i a l feature of t h i s study's contribution, the discussion of the implications f o r health care and further research i s not l i m i t e d to the medication-taking of schizophrenic c l i e n t s , but also extends to patient health behavior and compliance i n general. 128 IMPLICATIONS FOR HEALTH CARE Both the terms "compliance" and "medication-taking" have been used throughout t h i s study to r e f e r to patient behavior i n regards to medica-t i o n . The use of "compliance" to describe t h i s behavior denotes a p a r t i -cular perspective towards that behavior, and thus i t influences the way i n which both c l i n i c i a n s and researchers approach patients' medication-taking. Even newer terms such as therapeutic a l l i a n c e emphasize the pati e n t - t h e r a p i s t r e l a t i o n s h i p i n medication-taking. This study's data demonstrates the complexity of patient behavior which may not be i d e n t i -f i e d by focussing on compliance or the pat i e n t - t h e r a p i s t r e l a t i o n s h i p i n general. Terms which describe the patient behavior, such as medication-taking, appear to be more us e f u l s t a r t i n g points for c l i n i c i a n s and researchers i n conceptualizing such behavior. Support for some of the factors which have been suggested i n previous compliance research was given, for example, the complexity of the regime, and the frequency of contact with the care-giver (supervision). However, t h i s study emphasizes there are no s i m p l i s t i c answers to be found. The study i d e n t i f i e s the need for greater understanding of patient behavior and chronic i l l n e s s . I t has been suggested that patients experience changes i n t h e i r perspectives, with accompanying changes i n the i r behavior, as they l i v e with t h e i r i l l n e s s e s . The study suggested considerations for patient education programs. The assumption that patient education leads to greater compliance had previously been challenged. This study suggests a d d i t i o n a l notions con-cerning patient education: that patients value information and experience from sources i n addition to professionals; that knowledge can be imple-mented unpredictably, therefore actual behaviors need to be discussed; 129 and many f a c e t s o f l i v i n g w i t h t h e i l l n e s s a f f e c t t h e p a r t i c u l a r h e a l t h b e h a v i o r and t h e r e f o r e s h o u l d be c o n s i d e r e d i n p a t i e n t e d u c a t i o n programs.; The n o t i o n t h a t c l i e n t s and h e a l t h c a r e p r o f e s s i o n a l s may not s h a r e t h e same i d e o l o g i c a l b a s i s i n r e g a r d t o t h e i l l n e s s and t r e a t m e n t has c o n s i d e r a b l e i m p l i c a t i o n s f o r h e a l t h c a r e . There i s a need f o r t h e h e a l t h p r o f e s s i o n a l t o e l i c i t and a t t e n d t o t h e c l i e n t ' s i d e o l o g y i n o r d e r t o p r o v i d e o p t i m a l h e a l t h c a r e . A l t h o u g h t h e p r e v i o u s comments a p p l y t o many h e a l t h p r o f e s s i o n s , s p e c i f i c i m p l i c a t i o n s f o r n u r s i n g w i l l now be d i s c u s s e d . There i s a need t o examine t h e s i m i l a r i t i e s and d i f f e r e n c e s i n t h e ways i n w h i c h n u r s e s , as compared t o o t h e r h e a l t h p r o f e s s i o n a l s , i n f l u e n c e p a t i e n t s ' h e a l t h b e h a v i o r s , b o t h from t h e n u r s e s ' and p a t i e n t s ' p e r s p e c t i v e s . As n u r s e s assume more expanded r o l e s as p r i m a r y c a r e g i v e r s , t h e r e i s g r e a t e r need f o r n u r s e s t o u n d e r s t a n d t h e c l i e n t s ' p e r s p e c t i v e s on h e a l t h b e h a v i o r and t h e i m p a ct of t h e s e p e r s p e c t i v e s on t h e d e t e r m i n a t i o n of p a t i e n t b e h a v i o r . Hogue (1979) makes t h r e e s u g g e s t i o n s t o n u r s e s whoi'wish' to improve com-p l i a n c e : " t h i n k about t h e r e g i m e n from t h e p a t i e n t ' s p o i n t of v i e w ; use t h e power o f n a t u r a l s u p p o r t s y s t e m s ; and c o l l a b o r a t e w i t h o t h e r s i n t e r e s t e d i n t h e p a t i e n t ' s p r o g r e s s " (Hogue 1979, p. 257-258). The o r g a n i z a t i o n of t h e p a r t i c i p a n t s ' a c c o u n t s i n d i c a t e d some major c a t e g o r i e s w h i c h might be h e l p f u l t o n u r s e s i n o b t a i n i n g c l i e n t p e r s p e c t i v e s toward m e d i c a t i o n - t a k i n g . T h i s s t u d y was n o t g u i d e d by a t h e o r e t i c a l framework f o r n u r s i n g . However, th e e m p i r i c a l d a t a p r e s e n t e d i n t h i s s t u d y can be used i n r e l a t i o n t o t h e o r y development i n n u r s i n g : what g u i d a n c e does a p a r t i c u l a r frame-work o f f e r f o r t h e u n d e r s t a n d i n g of t h i s d a t a ? For example, t h e c o n c e p t " s e l f - c a r e " ' has been i d e n t i f i e d as a key c o n cept f o r n u r s i n g (Orem 1971) 130 and the data gathered i n t h i s study could prove useful i n the v a l i d a t i o n and further development of t h i s concept. SUGGESTIONS FOR FURTHER RESEARCH The introduction to t h i s discussion indicated that, due to the impor-tance of the perspective adopted by t h i s study, findings would be gener-a l i z e d to patient health behaviors. However, further research with other patient groups i s suggested and w i l l be discussed. The p a r t i c i p a n t s i n t h i s study were schizophrenic c l i e n t s who have been categorized into two groups, short-term and long-term c l i e n t s , based on the length of t h e i r treatment and i l l n e s s . The p a r t i c i p a n t group shared d i s t i n c t features compared with the schizophrenic population i n general: t h e i r community l i v i n g arrangements and t h e i r use of o r a l medications. Is th e i r perspective representative of t h i s c l i e n t population i n to t a l ? Further research including c l i e n t s on i n j e c t a b l e medications i s indicated. In order to explore the d i f f e r e n t perspectives of short-term and long-term patients, the most desirable designs for further research are l o n g i t u d i n a l studies. Such studies could describe the process of taking medications more f u l l y . These studies would also include patients with d i v e r s i t i e s of outcomes i n terms of contact with the mental health system, types of l i v i n g arrange-ments, and types of medications. Longitudinal studies should focus on the i l l n e s s and treatment experience i n general, considering patient behaviors other than medication-taking. In order to enhance our understanding of the patie n t - t h e r a p i s t r e l a t i o n s h i p , both the c l i e n t s ' and the health care professionals' per-spectives should be studied, as well as the i n t e r a c t i o n between these perspectives. The need to d i f f e r e n t i a t e the influence of the various pr o f e s s i o n a l r o l e s on patient behavior has been discussed previously. 131 Although this and other studies have been applied to compliance research in general, there is a need to understand client perspectives for various illnesses. In what way is illness, particularly chronic i l l -ness, a similar experience? In what ways do the unique features of the disease and treatment contribute to different illness experiences? Further research is suggested to answer these questions. Previously i t was emphasized that the regime must be efficacious before concern about compliance was warranted. The f i n a l suggestion for research relates to the need to link the process of health care with outcomes. What behaviors on the part of the patient and the care-givers lead to improved health outcomes, recognizing that a variety of measures have been used in judging health? The value of this study rests in i t s contribution toward the under-standing of patient health behavior, specifically the medication-taking of schizophrenic clients. It i s hoped that this understanding w i l l be beneficial in the continuing development of co-operative and productive relationships between nurses and their clients. 132 BIBLIOGRAPHY Amdur, M.A. 1979. M e d i c a t i o n c o m p l i a n c e i n o u t - p a t i e n t p s y c h i a t r y . Comprehensive Psychiatry 20: 339-46. A p p l e t o n , W.S., and D a v i s , M.J. 1973.. Practical c l i n i c a l psychopharmacology. New Y o r k : Medcom P r e s s . Ayd, F . J . 1973. R a t i o n a l pharmacotherapy: bnce-a-day dr u g dosage. Diseases of the Nervous System 34: 371-78. B a r o f s k y , I . 1978. C o m p l i a n c e , a d h e r e n c e , and t h e t h e r a p e u t i c a l l i a n c e : s t e p s i n the development of s e l f - c a r e . Social Science and Medicine 12: 369-76. . ed. 1977. Medication compliance: a behavioral management approach. T h o r o f a r e , New J e r s e y : C h a r l e s B. S l a c k . B e c k e r , H.S. 1973. Outsiders: studies in the sociology of deviance. New Y o r k : The F r e e P r e s s . , and Geer, B. 1970. In Qualitative methodology: firsthand involvement with the social world, ed. W.J. F i l s t e a d , pp. 133-42. C h i c a g o : Markham P u b l i s h i n g Company. B e c k e r , M.H. 1974. The h e a l t h b e l i e f model and s i c k r o l e b e h a v i o r . Health Education Monograph 2: 409-19. B e c k e r , M.H.; Drachman, R.H.; and K i r s c h t , J.P. 1972a.' P r e d i c t i n g mothers!, c o m p l i a n c e w i t h p e d i a t r i c m e d i c a l r e g i m e n s . The Journal of Pediatrics 81: 843-54. . 1972b. M o t i v a t i o n s as p r e d i c t o r s o f h e a l t h b e h a v i o r . Health Services Report 87: 852-62. B e c k e r , M.H., and Maiman, L.A. 1975. S o c i o b e h a v i o r a i d e t e r m i n a n t s o f c o m p l i a n c e w i t h h e a l t h and m e d i c a l c a r e recommendations. Medical Care 13: 10-24. B e r k o w i t z , N.; Malone, M.; K l e i n , M.; and E a t o n , A. 1963. P a t i e n t f o l l o w -t h r o u g h i n t h e o u t p a t i e n t department. Nursing Research 12: 16-22. B l a c k w e l l , B. 1972. Commentary: t h e dr u g d e f a u l t e r . Clinical Pharmacology and Therapeutics 13: 841-48. . 1973a. . Drug -therapy: " p a t i e n t c o m p l i a n c e . New England Journal of Medicine 289: 249-52. . 1973b. Drug d e v i a t i o n i n p s y c h i a t r i c p a t i e n t s . I n The future of pharmaco-therapy: new drug delivery systems, ed. F . J . Ayd, pp. 17-31. B a l t i m o r e : I n t e r n a t i o n a l Drug Therapy N e w s l e t t e r . 133 . 1979. Treatment adherence: a contemporary o v e r v i e w . Psychosomatics 20: 27-35. B l a x t e r , M. 1976. The meaning of disability: a sociological study of impairment. London: Heinemann. Burgoyne, R.W. 1976. E f f e c t o f d r u g r i t u a l changes on s c h i z o p h r e n i c p a t i e n t s . American Journal of Psychiatry 133: 284-89. C a p l a n , R.D.; R o b i n s o n , E.A.R>; F r e n c h , J.R.P.; C a l d w e l l , J.R.; and S h i n , M. 1976. Adhering to medical regimens: pilot experiments in patient education and social support. Ann A r b o r , M i c h i g a n : The U n i v e r s i t y o f M i c h i g a n . C h r i s m a n , N.J. 1976. A m e r i c a n p a t t e r n s o f h e a l t h c a r e - s e e k i n g b e h a v i o r . I n The American dimension: cultural myths and social r e a l i t i e s , ed. W. A r e n s and S. Montague, pp. 206-17. New Y o r k : A l f r e d P u b l i s h i n g Co. . 1977. The h e a l t h s e e k i n g p r o c e s s : an a p p r o a c h t o t h e n a t u r a l h i s t o r y - o f i l l n e s s . . Culture, Medicine and Psychiatry 1: 351-77. C h r i s t e n s e n , D.B. 1978. D r u g - t a k i n g c o m p l i a n c e : a r e v i e w and s y n t h e s i s . Health Services Research 13: 171-87. C o l e , J.O.; B o n a t o , R.; and G o l d b e r g , S.C. 1968. N o n - s p e c i f i c f a c t o r s i n the d r u g t h e r a p y o f s c h i z o p h r e n i c p a t i e n t s . I n Eon-specific factors in drug therapy,, ed. K. R i c k e l s , pp. 115-27. S p r i n g f i e l d : C h a r l e s C. Thomas. C o t t l e , T . J . 1977. Private lives and public accounts. Amherst: U n i v e r s i t y o f M a s s a c h u s e t t s P r e s s . Cumming, J . , and Cumming, E. 1968. On 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 n The mental patient: studies in the sociology of deviance, eds. S.P. S p i t z e r and N.K. D e n z i n , pp. 409-18. T o r o n t o : M c G r a w - H i l l . D a r l e y , P . J . , and Kenny, W.T. 1971. Community c a r e and t h e Queequee syndrome: a p h e n o m e n o l o g i c a l e v a l u a t i o n o f methods o f r e h a b i l i t a t i o n f o r p s y c h o t i c p a t i e n t s . American Journal of Psychiatry 127: 1333-38. D a v i s , A . J . 1978. The p h e n o m e n o l o g i c a l a p p r o a c h i n n u r s i n g r e s e a r c h . I n The nursing profession: views through the mist, ed. N. Chaska, pp. 186-97. S c a r b o r o u g h , O n t a r i o : M c G r a w - H i l l R y e r s o n L i m i t e d . D a v i s , J.M. 1975. Overview: m a i n t e n a n c e t h e r a p y i n p s y c h i a t r y : I . s c h i z o p h r e n i a . American Journal of Psychiatry 132: 1237-45. . 1976. Recent developments i n t h e d r u g t r e a t m e n t o f s c h i z o -p h r e n i a . American Journal of Psychiatry 133: 208-14. D a v i s , M.S. 1968. V a r i a t i o n s i n p a t i e n t s ' c o m p l i a n c e w i t h d o c t o r s ' a d v i c e : an e m p i r i c a l a n a l y s i s o f p a t t e r n s of c o m m u n i c a t i o n . American Journal of Public Health 58: 274-88. 134 . 1971. V a r i a t i o n s i n p a t i e n t s ' c o m p l i a n c e w i t h d o c t o r s ' o r d e r s : m e d i c a l p r a c t i c e and d o c t o r - p a t i e n t i n t e r a c t i o n . Psychiatry in Medicine 2: 31-54. D i e r s , D. 1979. Research in nursing practice. P h i l a d e l p h i a : L i p p i n c o t t . D o u g l a s , J.D., ed. 1970. Deviance.and respectability: the social construc-tion of moral meanings. New Y o r k : B a s i c Books. DSM I I I : Diagnostic and s t a t i s t i c a l manual of mental disorders. 3 r d . ed. 1980. A m e r i c a n P s y c h i a t r i c A s s o c i a t i o n , pp. 181-93. D u n n e l l , K., and C a r t w r i g h t , A. 1972. Medicine takers, prescribers, and hoarders. London: R o u t l e d g e and Kegan P a u l . E i s e n t h a l , S.; Emery, R.; L a z a r e , A.; and U d i n , H. 1979. 'Adherence' and the n e g o t i a t e d a p p r o a c h t o p a t i e n t h o o d . Archives of General Psychiatry 36: 393-98. F a b r e g a , H. 1973. Toward a model o f i l l n e s s b e h a v i o r . Medical Care 11: 470-84. F i l s t e a d , W.J., ed. 1970. Qualitative methodology: firsthand involvement with the social world. C h i c a g o : Markham P u b l i s h i n g Company. F r a n c i s , V.; K o r s c h , B.M.; and M o r r i s , M.J. 1969. Gaps i n d o c t o r - p a t i e n t c ommunication: p a t i e n t s ' r e s p o n s e t o m e d i c a l a d v i c e . New England Journal of Medicine 280: 535-40. Freedman, A.M.; K a p l a n , H.I.; and Sadock, B . J . 1976. Modern synopsis of comprehensive textbook of psychiatry/II. 2nd ed. B a l t i m o r e : The. W i l l i a m s and W i l k i n s Co. Freemon, B.; N e g r e t e , V.F. ; D a v i s , M.; and K o r s c h , B.M. 1971. Gaps i n d o c t o r - p a t i e n t communication: d o c t o r - p a t i e n t i n t e r a c t i o n a n a l y s i s . Pediatric Research 5: 298-311. G a r f i n k e l , H. 1967. Studies in ethnomethodology. Englewood " C l i f f s , New J e r s e y : P r e n t i c e - H a l l . G i l l u m , R.F., and B a r s k y , A . J . 1974. D i a g n o s i s and management o f p a t i e n t n o n - c o m p l i a n c e . Journal of the American Medical Association 228: 1563-67. G l a s e r , B., and S t r a u s s , A. 1965. D i s c o v e r y o f s u b s t a n t i v e t h e o r y : a b a s i c s t r a t e g y u n d e r l y i n g q u a l i t a t i v e r e s e a r c h . The American Behavioral Scientist 8: 5-13. Goffman, E. 1963. Stigma: notes on the management of spoiled identity. Englewood C l i f f s , New J e r s e y : P r e n t i c e - H a l l . . 1961. The m o r a l c a r e e r o f t h e m e n t a l p a t i e n t . Asylums, pp. 125-69. New Y o r k : Doubleday. 1 135 H a m i l t o n , M. 1968. D i s c u s s i o n o f t h e m e e t i n g . I n Non-specific factors in drug therapy, ed. K. R i c k e l s , pp. 133-35. S p r i n g f i e l d : C h a r l e s C. Thomas. H a n s e l l , N. 1978. S e r v i c e s f o r s c h i z o p h r e n i c s : a l i f e l o n g a p p r o a c h t o t r e a t m e n t . Hospital and Community Psychiatry 29: 105-109. H a y e s - B a u t i s t a , D.E. 1976. M o d i f y i n g the t r e a t m e n t : p a t i e n t c o m p l i a n c e , p a t i e n t c o n t r o l , and m e d i c a l c a r e . Social Science and Medicine 10: 233-38. Haynes, R.B.; T a y l o r , D.W.; and S a c k e t t , D.L., eds. 1979. Compliance in health care. B a l t i m o r e : The J o h n _ H o p k i n s U n i v e r s i t y P r e s s . H i t c h e n s , E m i l y A. 1977. H e l p i n g p s y c h i a t r i c o u t - p a t i e n t s a c c e p t d r u g t h e r a p y . American Journal of Nursing 77: 464-66. H o g a r t y , G.E.; G o l d b e r g , S.C.; and t h e C o l l a b o r a t i v e Study Group, B a l t i m o r e 1973. Drug and s o c i o t h e r a p y i n the a f t e r c a r e o f s c h i z o p h r e n i c p a t i e n t s . Archives of General Psychiatry 28: 54-64. Hogue, C C . 1979. N u r s i n g and c o m p l i a n c e . I n Compliance: in health care, eds. R.B. Haynes, D.W. T a y l o r , and D.L. S a c k e t t , pp. 247-59. B a l t i m o r e : The John' H o p k i n s U n i v e r s i t y P r e s s . Horn, D. 1976. A model f o r t h e s t u d y o f p e r s o n a l c h o i c e h e a l t h b e h a v i o r . International Journal of Health Education 19: 89-98. Howard, J . , and S t r a u s s , A. 1975. Humanizing health care. T o r o n t o : John W i l e y and Sons. H u l k a , B.S.; Kupper, L.L.; C a s s e l , J . C ; E f i r d , R.L.; and B u r d e t t e , J.A. 1975. M e d i c a t i o n use and m i s u s e : p h y s i c i a n - p a t i e n t d i s c r e p a n c i e s . Journal of Chronic Disease 28: 7-21. I r o n s , P.D. 1978. Psychotropic drugs and nursing interventions. T o r o n t o : McGraw H i l l Book Company. J e n k i n s , C D . 1979. An approach t o t h e d i a g n o s i s and t r e a t m e n t o f problems o f h e a l t h r e l a t e d b e h a v i o r . International Journal of Health Education 22: 3-24. Johnson, D.A.W., and Freeman, H. 1973. Drug d e f a u l t i n g by p a t i e n t s on l o n g - a c t i n g p h e n o t h i a z i n e s . Psychological Medicine 3: 115-19. K a s l . S.V. 1974. The h e a l t h b e l i e f model and b e h a v i o r r e l a t e d t o c h r o n i c i l l n e s s . Health Education Monograph 2: 433-54. , and Cobb, S. 1966. H e a l t h b e h a v i o r , i l l n e s s b e h a v i o r , and s i c k - r o l e b e h a v i o r . Archives of Environmental Health 12: 246-66. K i r s c h t , J.P. 1974. R e s e a r c h r e l a t e d t o t h e m o d i f i c a t i o n o f h e a l t h b e l i e f s . Health Education Monograph 2: 455-69. 136 K l e i n m a n , A. 1978. Concepts 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 systems as c u l t u r a l s ystems. Social Science and Medicine 12: 85-93. , . 1977. L e s s o n s from a c u l t u r a l a p p r o a c h t o m e d i c a l a n t h r o -p o l o g i c a l r e s e a r c h . Medical Anthropology Newsletter 8 ( 4 ) : .11-14. Knapp, D.A., and Knapp, D.E. 1972. D e c i s i o n - m a k i n g and s e l f - m e d i c a t i o n . American Journal Hospital Pharmacy 29: 1004-12. K o r s c h , B.M.; G o z z i , E.K.; and F r a n c i s , V. 1968. Gaps i n d o c t o r - p a t i e n t c o m m unication: I . D o c t o r - p a t i e n t i n t e r a c t i o n and p a t i e n t s a t i s f a c t i o n . Pediatrics 42: 855-71. Leake, C D . 1965. The h i s t o r y o f s e l f - m e d i c a t i o n . Annals of the New York Academy of Sciences 120: 815-22. L e i n i n g e r , M., ed. 1978. Transcultural nursing: concepts, theories, and practices. T o r o n t o : J . W i l e y & Sons. L e v i n , L.S.; K a t z , A.H.; and H o i s t , E. 1976. Self-care: lay i n i t i a t i v e s in health. New Y o r k : P r o d i s t . L i n , I . F . ; S p i g a , R.; and F o r t s c h , W. 1979. I n s i g h t and adherence t o med-i c a t i o n i n c h r o n i c s c h i z o p h r e n i a . Journal of Clinical Psychiatry 40: 430-32. Lindemann, C. 1974. Birth control and unmarried young women. New Y o r k : S p r i n g e r P u b l i s h i n g Co. MacGregor, F. 1966. U n c o - o p e r a t i v e p a t i e n t s : some c u l t u r a l i n t e r p r e t a -t i o n s . American Journal of Nursing 67: 88-91. Maiman, L.A., and B e c k e r , M.H. 1974. The h e a l t h b e l i e f model: o r i g i n s and c o r r e l a t e s i n p s y c h o l o g i c a l t h e o r y . Health Education Monograph 2: 336-53. Marder, S.R.; van Kammen, D.P.; D o c h e r t y , J.P.; Rayner, J . ; and Bunney, W.E. 1979. P r e d i c t i n g d r u g - f r e e improvement i n s c h i z o p h r e n i c p s y c h o s i s . Archives of General Psychiatry 36: 1080-85. M a r s t o n , M.V. 1970. Compliance w i t h m e d i c a l r e g i m e n s : a r e v i e w o f the l i t e r a t u r e . Nursing Research 19: 312-22. Mason, A.S.; F o r r e s t , I.S.; F o r r e s t , F.M.; and B u t l e r , H. 1963. Adherence t o m a i n t e n a n c e t h e r a p y and r e h o s p i t a l i z a t i o n . Diseases of the Nervous System 24: 103-104. M c C l e l l a n , T.A., and Cowan, G. 1970. Use o f a n t i - p s y c h o t i c and a n t i -d e p r e s s a n t drugs by c h r o n i c a l l y i l l p a t i e n t s . American Journal of Psychiatry 126: 1771-73. Mendel, W.M. 1976. Schizophrenia: the experience and i t s treatment. San F r a n c i s c o : J o s s e y - B a s s . 137 . 1975. Supportive care: theory and technique. San F r a n c i s c o : Mara Books, I n c . Michaux, W.W. 1961. S i d e e f f e c t s , r e s i s t a n c e , and dosage d e v i a t i o n s i n p s y c h i a t r i c o u t - p a t i e n t s t r e a t e d w i t h t r a n q u i l i z e r s . Journal of Nervous and Mental Diseases 133: 203-12. M i l l e r , D.H. 1973. Worlds t h a t f a i l . I n Where medicine f a i l s , ed. A. S t r a u s s , 2nd ed., pp. 151-66. New J e r s e y : T r a n s a c t i o n Books. M i t c h e l l , J.H. 1970. Compliance with medical regimens: an annotated bibliography. B a l t i m o r e , M a r y l a n d : John H o p k i n s U n i v e r s i t y . M y e r s , E.D., and C a l v e r t , E . J . 1979. Knowledge o f s i d e e f f e c t s and p e r -s e v e r a n c e w i t h m e d i c a t i o n . British Journal of Psychiatry 134: 526-27. N e e l y , E., and P a t r i c k , L.M. 1968. Problems o f aged p e r s o n s t a k i n g medi-c a t i o n a t home. Nursing Research 17: 52-55. N e l s o n , A.; G o l d , B.; H u t c h i s o n , R.; and B e n e z r a , E. 1975. Drug d e f a u l t among s c h i z o p h r e n i c p a t i e n t s . American Journal of Hospital Pharmacy 32: 1237-42. Newton, M.; Godbey, K.L.; Newton, D.W.; and Godbey, A. 1978. How you can improve the e f f e c t i v e n e s s o f p s y c h o t r o p i c d r u g t h e r a p y . Nursing 78: 46-55. Orem, D.E. 1971. Nursing: concepts of practice. T o r o n t o : McGraw H i l l Book Company. P r a t t , L. 1973. The s i g n i f i c a n c e o f t h e f a m i l y i n m e d i c a t i o n . The Journal of Comparative Family Studies 4: 13-35. R e d l e n e r , I . E . , and S c o t t , C. 1979. I n c o m p a t i b i l i t i e s o f p r o f e s s i o n a l and r e l i g i o u s i d e o l o g y : problems o f m e d i c a l management and outcome i n a cas e o f p e d i a t r i c m e n i n g i t i s . Social Science and Medicine 13B: 89-93. R e i f , L. 1975. Beyond m e d i c a l i n t e r v e n t i o n : s t r a t e g i e s f o r managing l i f e i n the f a c e o f c h r o n i c i l l n e s s . I n Nurses in practise: a perspective on work environments, ed. M. D a v i s , M. Kramer, and A. S t r a u s s , pp. 261-73. S a i n t L o u i s : C.V. Mosby. R i c h a r d s , A.D. 1964. A t t i t u d e and dr u g a c c e p t a n c e . British Journal of Psychiatry 110: 46-52. R i s t , R. 1979. On t h e means o f knowing: q u a l i t a t i v e r e s e a r c h i n educa-t i o n . New York University Education Quarterly Summer 1979: 17-21. Roghmann, K . J . ; H e c h t , P.; and H a g g e r t y , R . J . 1973. F a m i l y c o p i n g w i t h e v e r y d a y i l l n e s s : s e l f r e p o r t s from a h o u s e h o l d s u r v e y . The Journal of Comparative Family Studies 4: 49-62. 138 R o s e n s t o c k , I.M. 1966. Why p e o p l e use h e a l t h s e r v i c e s . Millbank Memorial Fund Quarterly 44: 97-127. S a c k e t t , D.L., and Haynes, R.B., eds. 1976. Compliance with therapeutic regimens. B a l t i m o r e : The John H o p k i n s U n i v e r s i t y P r e s s . S c h e f f , T., ed. 1975. Labeling madness. Englewood C l i f f s , New J e r s e y : P r e n t i c e - H a l l I n c . S c h u t z , A. 1967. Collected papers I: the problems of social reality. The Hague: M a r t i n u s N i j h o f f . S c h w a r t z , D.; Wang, M.; Z e i t z , L.; and Goss, M.E.W. 1962. M e d i c a t i o n e r r o r s made by e l d e r l y , c h r o n i c a l l y i l l p a t i e n t s . American Journal of Public Health 52: 2018-29. Serban, G., and Thomas, A. 1974. A t t i t u d e s and b e h a v i o r s o f a c u t e and c h r o n i c s c h i z o p h r e n i c p a t i e n t s r e g a r d i n g a m b u l a t o r y t r e a t m e n t . American Journal of Psychiatry 131: 991-95. S o s k i s , D.A. 1972. A s u r v e y of p s y c h i a t r i c o p i n i o n on s c h i z o p h r e n i a . Comprehensive Psychiatry 13: 572-80. , and J a f f e , R.L. 1979. Communicating w i t h p a t i e n t s about a n t i -p s y c h o t i c d r u g s . Comprehensive Psychiatry 20: 126-31. S p i t z e r , R.L.; A n d r e a s e n , N.C.; and E n d i c o t t , J . 1978. S c h i z o p h r e n i a and o t h e r p s y c h o t i c d i s o r d e r s i n DSM-III. Schizophrenia Bulletin 4: 489-509. S p i t z e r , S.P., and D e n z i n , N.K., eds. 1968. The mental patient: studies in the sociology of deviance. T o r o n t o : M c G r a w - H i l l . S t a r f i e l d , B. 1973. H e a l t h s e r v i c e s r e s e a r c h : a w o r k i n g model. The New England Journal of Medicine 289: 132-36. Stephens, J.H. 1978. Long-term p r o g n o s i s and f o l l o w - u p i n s c h i z o p h r e n i a . Schizophrenia Bulletin 4: 25-47. S t i m s o n , G.V. 1974. Obeying d o c t o r ' s o r d e r s : a v i e w from the o t h e r s i d e . Social Science and Medicine 8: 97-104. S t o d d a r t , K. 1974. The f a c t s o f l i f e about dope: o b s e r v a t i o n s o f a l o c a l pharmacology. Urban Life and Culture 3: 179-204. S t r a u s s , A., and G l a s e r , B.D. 1970. Anguish: a case history of a dying trajectory. M i l l V a l l e y , C a l i f o r n i a : The S o c i o l o g y P r e s s . S t r a u s s , J.S., and C a r p e n t e r , W.T. 1978. The p r o g n o s i s o f s c h i z o p h r e n i a : r a t i o n a l e f o r a m u l t i d i m e n s i o n a l c o n c e p t . Schizophrenia Bulletin 4: 56-67. 139 Suchman, E.A. 1967. P r e v e n t a t i v e h e a l t h b e h a v i o r : a model f o r r e s e a r c h on community h e a l t h campaigns. Journal of Health and Social Behavior 8: 197-209. Sudnow, D. 1967. Passing on: the social organization of dying. Englewood C l i f f s , New J e r s e y : P r e n t i c e H a l l . S v a r s t a d , B.L. 1977. P h y s i c i a n - p a t i e n t communication and p a t i e n t c o n f o r m i t y w i t h m e d i c a l a d v i c e . I n The growth of bureaucratic medicine: an inquiry into the dynamics of patient behavior and the organization of medical care, eds. D. Mechanic e t a l . , pp. 220-38. New Y o r k : W i l e y . S z a s z , T. 1968. The myth of m e n t a l i l l n e s s . I n The mental patient: studies in the sociology of deviance, eds. S.P. S p i t z e r and N.K. D e n z i n , pp. 22-30. T o r o n t o : M c G r a w - H i l l Book Company. T o l e d o , J.B.; Hughes, H.; and Sims, J . 1979. Management of n o n - c o m p l i a n c e t o m e d i c a l r e g i m e n : a s u g g e s t e d m e t h o d o l o g i c a l a p p r o a c h . Inter-national Journal of Health Education 22: 232-41. U n i v e r s i t y o f C h i c a g o P r e s s 1969. A manual of style. 1 2 t h ed. V a i l l a n t , G.E. 1978a. A 10 y e a r f o l l o w - u p o f r e m i t t i n g s c h i z o p h r e n i c s . Schizophrenia Bulletin 4: 78-85. . 1978b. P r o g n o s i s and the c o u r s e of s c h i z o p h r e n i a . Schizophrenia Bulletin 4: 20-24. Van P u t t e n , T. 1978. Drug r e f u s a l i n s c h i z o p h r e n i a : c auses and p r e s c r i b -i n g h i n t s . Hospital and Community Psychiatry 29: 110-12. . 1974. Why do s c h i z o p h r e n i c p a t i e n t s r e f u s e t o t a k e t h e i r d rugs? Archives of General Psychiatry 31: 67-72. ; Crumpton, E.; and Y a l e , C. 1976. Drug r e f u s a l i n s c h i z o p h r e n i a and t h e w i s h t o be c r a z y . Archives of General Psychiatry 33: 1443-46. , and May, P.R.A. 1978. S u b j e c t i v e r e s p o n s e as a p r e d i c t o r o f outcome i n pharmacotherapy. Archives of General Psychiatry 35: 477-80. V i n c e n t , P. 1971. F a c t o r s i n f l u e n c i n g p a t i e n t n o n - c o m p l i a n c e : a t h e o -r e c t i c a l a p p r oach. Nursing Research 20: 509-16. W a x i e r , N.E. 1979. I s outcome f o r s c h i z o p h r e n i a b e t t e r i n n o n - i n d u s t r i a l s o c i e t i e s ? The ca s e of S r i Lanka. The Journal of Nervous and Mental Diseases 167: 144-58. Webster's New C o l l e g i a t e D i c t i o n a r y 1976. T o r o n t o : Thomas A l l e n and Son L i m i t e d . 140 Weidman, H.H. 1975. Concepts as s t r a t e g i e s f o r change. Psychiatric Annals 5: 312-14. W i l l c o x , D.R.C.; G i l l a n , R.; and Hare, E.H. 1965. Do p s y c h i a t r i c o u t -p a t i e n t s t a k e t h e i r d r u gs? British Medical Journal 2: 790-92. W i l s o n , H.S., and K n e i s l , C R . 1979. Psychiatric nursing. Don M i l l s , O n t a r i o : A d d i s o n - W e s l e y P u b l i s h i n g Company. W i l s o n , J.D., and Enoch, M.D. 1967. E s t i m a t i o n o f drug r e j e c t i o n by s c h i z o p h r e n i c i n - p a t i e n t s w i t h a n a l y s i s o f c l i n i c a l f a c t o r s . British Journal of Psychiatry 113: 209-11. 141 A P P E N D I X 142 Appendix A Sample: Introductory Letter Dear : This l e t t e r i s to ask you to p a r t i c i p a t e i n a study which I am doing as a student at the Un i v e r s i t y of B r i t i s h Columbia, taking my Masters i n Nursing. Although (Team Name) has helped me to contact you, I do not work for G.V.M.H.S. I am interested i n how persons l i k e yourself deal with your med-i c a t i o n on a day to day basis. There i s very l i t t l e information about c l i e n t s ' views of medication and I think i t i s important to know more about what you think about medication. If you are w i l l i n g to p a r t i c i p a t e i n the study, I would l i k e to meet with you twice, at your residence, once i n A p r i l or May and once i n June. A t h i r d meeting may be requested; t h i s w i l l be discussed at the completion of the second interview. You w i l l be free to withdraw from the study at any time. You would not be i d e n t i f i e d by name i n the study. I w i l l tape record the interviews, rather than write as we ta l k - the tape recordings would be for my use only. If you are w i l l i n g to p a r t i c i p a t e i n the study, I w i l l contact you by phone the week of to arrange an interview time. If you should decide not to p a r t i c i p a t e , your r e f u s a l to p a r t i c i p a t e w i l l not a f f e c t your contact with (Care Team Name) i n any way. If you decide to p a r t i c i p a t e , you w i l l be informed of the f i n a l r e s u l t s of the study. Sincerely yours, Pat P o r t e r f i e l d 143 Appendix B GREATER VANCOUVER MENTAL HEALTH SERVICE CONSENT I, , do hereby give my consent to p a r t i c i p a t e i n the study on medication-taking behavior which i s being conducted by the School of Nursing of the University of B r i t i s h Columbia. I understand a) that p a r t i c i p a t i o n i n the study involves no r i s k s or discomforts; b) that my p a r t i c i p a t i o n i s voluntary and that I may withdraw at any time; c) that r e f u s a l to p a r t i c i p a t e i n the study or with-drawal from the study w i l l i n no way i n t e r f e r e with the treatment which I w i l l receive, and d) that any information personally i d e n t i f y i n g me as a pa r t i c i p a n t i n t h i s study w i l l remain s t r i c t l y con-f i d e n t i a l . C l i e n t , or person authorizing consent i f Date other than c l i e n t . Relationship Therapist Date Po s i t i o n 144 Appendix C GREATER VANCOUVER MENTAL HEALTH SERVICE USE OF AUDIO/VISUAL EQUIPMENT The use of an audio/visual tape recorder to record my therapy sessions/ interviews has been discussed with me, and I agree to t h i s . They may be used by the following: YES NO The Therapist • • The Student placed at t h i s Community Care Team • • The Student's External Supervisor • • Authorized Personnel of the Greater Vancouver Mental Health • • Service Other . • • with the p r o v i s i o n that: a) The need for c o n f i d e n t i a l i t y s h a l l be explained p r i o r to each showing b) The student's f i e l d supervisor s h a l l be responsible for the safe-keeping and erasing of a l l tapes at the end of the student's place-ment, unless otherwise agreed upon. c) I have the r i g h t to revoke t h i s permission at any time. I hereby give my consent for the tapes to be YES NO retained for the following purpose: • • Date C l i e n t Date G.V.M.H.S. F i e l d Supervisor P o s i t i o n Date Student C.C.T. 145 A p p e n d i x D I n t e r v i e w Guide A D e s c r i p t i o n o f Content t o be D i s c u s s e d i n I n i t i a l I n t e r v i e w 1. M e d i c a t i o n - t a k i n g b e h a v i o r w i t h i n c l i e n t ! s d a i l y l i f e : (a) I d e n t i f i c a t i o n o f m e d i c a t i o n i n q u e s t i o n . (b) D e s c r i p t i o n o f c u r r e n t m e d i c a t i o n - t a k i n g p a t t e r n (what, how much, when, where, how, how much v a r i a t i o n ) . (c) How c l i e n t d e t e r m i n e s d a i l y p a t t e r n o f m e d i c a t i o n - t a k i n g . (d) What i n f l u e n c e s c l i e n t t o a l t e r p a t t e r n o f m e d i c a t i o n - t a k i n g . (e) How m e d i c a t i o n - t a k i n g f i t s i n t o d a i l y p a t t e r n o f a c t i v i t i e s . ( f ) W i t h whom c l i e n t d i s c u s s e s m e d i c a t i o n - t a k i n g . (g) Who i n f l u e n c e s c l i e n t ' s m e d i c a t i o n - t a k i n g . (h) How c l i e n t d i s c u s s e s m e d i c a t i o n - t a k i n g w i t h h e a l t h p r o f e s s i o n a l s ( d o c t o r s , n u r s e s , e t c . ) . ( i ) Any t h o u g h t s and c o n c e r n s about m e d i c a t i o n / m e d i c a t i o n - t a k i n g . 2. The aims and i n t e n t o f m e d i c a t i o n - t a k i n g ; t h e c l i e n t ' s : (a) G o a l / a i m i n r e g a r d s t o m e d i c a t i o n - t a k i n g . (b) E x p e c t a t i o n s c o n c e r n i n g f u t u r e m e d i c a t i o n - t a k i n g ( f o r how l o n g / u n t i l when). (c) E x p e c t a t i o n s o f f u t u r e i f n o t c u r r e n t l y t a k i n g m e d i c a t i o n . (d) E x p l a n a t i o n o f how m e d i c a t i o n works. (e) S o u r c e s o f i n f o r m a t i o n c o n c e r n i n g m e d i c a t i o n . 3. P a s t E x p e r i e n c e s w i t h m e d i c a t i o n - t a k i n g : (a) L e n g t h o f t i m e c l i e n t has been t a k i n g m e d i c a t i o n . (b) • Comparison o f c u r r e n t p a t t e r n t o p r e v i o u s p a t t e r n s o f m e d i c a t i o n -t a k i n g . ( c ) How changes i n t h e m e d i c a t i o n - t a k i n g p a t t e r n came about. (d) P a s t e x p e r i e n c e r e l a t e d t o m e d i c a t i o n - t a k i n g . (e) I n f l u e n c e o f any p r e v i o u s e x p e r i e n c e s on p r e s e n t m e d i c a t i o n -t a k i n g . 

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