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Chronic nonadherence to therapeutic regimes : an in-depth analysis of male arthritis patients Adam, Paul Marcel 1988

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CHRONIC NONADHERENCE TO THERAPEUTIC REGIMES: AN IN-DEPTH ANALYSIS OF MALE ARTHRITIS PATIENTS by PAUL MARCEL ADAM B.S.W., The U n i v e r s i t y of Western O n t a r i o , 1983 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTERS OF SOCIAL WORK i n THE FACULTY OF GRADUATE STUDIES School of S o c i a l Work We accept t h i s t h e s i s as conforming t o the r e q u i r e d standard THE UNIVERSITY OF BRITISH COLUMBIA August, 1988 ® Paul Marcel Adam, 1988 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department of j£oC\d kJarl*— The University of British Columbia 1956 Main Mall Vancouver, Canada V6T 1Y3 Date f ) ^ I f / f l f t DE-6(3/81) i ABSTRACT Chronic nonadherence i s the complete l a c k of adherence on the p a r t o f a p a t i e n t t o a t l e a s t one a s p e c t o f t h e i r t h e r a p e u t i c regime f o r extended p e r i o d s o f t i m e . C h r o n i c nonadherence i s s i m i l a r to other forms of nonadherence i n t h a t i t i s a phenomena which i s dangerous f o r p a t i e n t s , f r u s t r a t i n g f o r p r a c t i t i o n e r s , and c o s t l y t o the h e a l t h c a r e system. However, u n l i k e other forms o f nonadherence, very l i t t l e i s known about t h i s s u b j e c t . I n o r d e r t o d e t e r m i n e f a c t o r s r e l a t e d t o c h r o n i c nonadherence t o a home e x e r c i s e program, 15 male a r t h r i t i s p a t i e n t s of v a r y i n g ages underwent an i n - d e p t h s t r u c t u r e d i n t e r v i e w . E i g h t of these p a t i e n t s were i d e n t i f i e d by the A r t h r i t i s S o c i e t y as being c h r o n i c , treatment nonadherents. The other seven p a t i e n t s were randomly chosen from among the p o p u l a t i o n o f male a r t h r i t i s p a t i e n t s i n order to p r o v i d e a comparison to the c h r o n i c nonadherent p o p u l a t i o n . Ten v a r i a b l e s were examined i n t h i s study i n the hopes of determining f a c t o r s r e l a t e d t o c h r o n i c nonadherence. These v a r i a b l e s were as f o l l o w s : demographics, The Hea l t h B e l i e f s Model, p a t i e n t ' s e x p l a n a t o r y model, nature o f the i l l n e s s , s a t i s f a c t i o n w i t h p r a c t i t i o n e r a t t r i b u t e s , s h a r e d r e s p o n s i b i l i t y , o v e r a l l s a t i s f a c t i o n , a t t i t u d e s of s i g n i f i c a n t o t h e r s , use of unorthodox t r e a t m e n t s , and problems with the home e x e r c i s e program. i i D a t a a n a l y s i s f a i l e d t o p r o d u c e any 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 i n d i n g s , however the s t u d y d i d p o i n t t o some i n t e r e s t i n g a s s o c i a t i o n s . One f i n d i n g from t h i s study i s t h a t nonadherence seems to be r e l a t e d to p a t i e n t ' s H e a l t h B e l i e f s Models. Based on t h i s f i n d i n g the s t u d y then goes on to recommend an a p p r o p r i a t e i n t e r v e n t i o n which can be used by p r a c t i t i o n e r s to enhance p a t i e n t adherence. A second f i n d i n g f r o m t h i s s t u d y i s t h a t a s m a l l number o f t h e c h r o n i c n o n a d h e r e n t g r o u p were a c t u a l l y a d h e r e n t t o t h e i r home e x e r c i s e programs. S e v e r a l e x p l a n a t i o n s have been p r o v i d e d as to how t h e s e p a t i e n t s might have been f a l s e l y l a b e l l e d as c h r o n i c nonadherents. i i i TABLE OF CONTENTS ABSTRACT i LIST OF TABLES v i LIST OF FIGURES i x ACKNOWLEDGEMENTS . . x INTRODUCTION 1 ARTHRITIS AND NONADHERENCE - BACKGROUND INFORMATION . . . . 2 A r t h r i t i s - What Is I t ? 2 Adherence vs Compliance 4 The Importance of Nonadherence 5 Types on Nonadherence 6 Nonadherence - Deviance or J u s t i f i e d R e a c t i o n . . . . 8 C o n t r o l - An E s s e n t i a l Factor 10 A MODEL FOR UNDERSTANDING NONADHERENCE 17 Pre - I n t e r a c t i o n Phase 18 I n t e r a c t i o n Phase 28 Post - I n t e r a c t i o n Phase 37 METHODOLOGY 43 Subjects 43 i v Procedures 45 Measures 46 Adherence 49 Demographics 52 The Health B e l i e f s Model 52 P a t i e n t ' s Explanatory Model 54 Nature of the I l l n e s s 54 S a t i s f a c t i o n with P r a c t i t i o n e r A t t r i b u t e s . . . . 55 Shared R e s p o n s i b i l i t y 56 O v e r a l l S a t i s f a c t i o n 56 A t t i t u d e s of S i g n i f i c a n t Others . 58 Use of A l t e r n a t i v e Treatments 58 Problems with the Home E x e r c i s e Program 59 Enhancement of Q u e s t i o n n a i r e V a l i d i t y and . . . . R e l i a b i l i t y 59 Data A n a l y s i s 61 RESULTS 63 A n a l y s i s Using S e l f - R e p o r t e d Measures of Adherence. . . 64 Demographics 64 The Health B e l i e f s Model 65 P a t i e n t ' s Explanatory Model 69 Nature of the I l l n e s s 72 S a t i s f a c t i o n with P r a c t i t i o n e r A t t r i b u t e s . . . . 72 Shared R e s p o n s i b i l i t y 75 O v e r a l l S a t i s f a c t i o n 81 V A t t i t u d e s of S i g n i f i c a n t Others . . . 81 Use of A l t e r n a t i v e Treatments 82 Problems with the Home E x e r c i s e Program 82 DISCUSSION 85 V a r i a b l e s R e l a t e d to S e l f - R e p o r t e d Measures of Adherence 85 L i m i t a t i o n s of the Study 88 I m p l i c a t i o n s f o r S o c i a l Work P r a c t i c e : The C o n t r a c t i n g Process 91 C o n t r a c t i n g - A Technique f o r Enhancing C o n t r o l . . . . 97 Future Outlook 100 BIBLIOGRAPHY 102 APPENDIX 1 I l l S t r u c t u r e d Interview Schedule I l l APPENDIX 2 141 Sample Interview Tape T r a n s c r i p t . 141 APPENDIX 3 147 A n a l y s i s using A r t h r i t i s S o c i e t y c a t e g o r i z a t i o n of a c h r o n i c nonadherent group 147 Demographic F a c t o r s . . . 147 The Health B e l i e f s Model 151 v i P a t i e n t ' s Explanatory Model . 152 Nature of the I l l n e s s 153 S a t i s f a c t i o n with P r a c t i t i o n e r A t t r i b u t e s . . . . 154 Shared R e s p o n s i b i l i t y 157 O v e r a l l S a t i s f a c t i o n 163 A t t i t u d e s of S i g n i f i c a n t Others 166 Use of A l t e r n a t i v e Treatments 167 Problems with the Home E x e r c i s e Program 170 P o s s i b l e E x p l a n a t i o n s f o r the M i s i d e n t i f i c a t i o n Phenomena 171 L a b e l l i n g Deviant Behaviour 174 v i i LIST OF TABLES Table 1 Health S t r a t e g i c I n t e r a c t i o n Model: P r e - I n t e r a c t i o n Phase V a r i a b l e s , page 22. Table 2 Health S t r a t e g i c I n t e r a c t i o n Model: I n t e r a c t i o n Phase V a r i a b l e s , page 30. Table 3 Health S t r a t e g i c I n t e r a c t i o n Model: P o s t -I n t e r a c t i o n Phase V a r i a b l e s , page 40. Table 4 Correspondence between Study V a r i a b l e s and Int e r v i e w Schedule Questions, page 47. Table 5 C r o s s - T a b u l a t i o n s : P a t i e n t Demographic C h a r a c t e r i s t i c s by Adherence, page 66. Table 6 T-Test A n a l y s i s of the H e a l t h B e l i e f s Model w i t h Adherence, page 68. T a b l e 7 C r o s s - T a b u l a t i o n s : The H e a l t h B e l i e f s Model by Adherence, page 70. T a b l e 8 C r o s s - T a b u l a t i o n : N a t u r e o f t h e I l l n e s s by Adherence, page 73. Table 9 Other Medical Problems Reported by Study Respondents, page 74. Table 10 T-Test A n a l y s i s of P a t i e n t S a t i s f a c t i o n With P r a c t i t i o n e r A t t r i b u t e s with Adherence, page 76. Table 11 C r o s s - T a b u l a t i o n s : P a t i e n t S a t i s f a c t i o n with P r a c t i t i o n e r A t t r i b u t e s by Adherence, page 77. Table 12 C r o s s - T a b u l a t i o n s : Shared R e s p o n s i b i l i t y Models by Adherence, page 78. v i i i Table 13 C r o s s - T a b u l a t i o n s : Shared R e s p o n s i b i l i t y Models by Adherence (Median S p l i t ) , page 79. Table 14 Median Test A n a l y s i s of Problems with the Home E x e r c i s e Program with Adherence, page 83. Table 15 C r o s s - T a b u l a t i o n s : P a t i e n t Demographic C h a r a c t e r i s t i c s by A r t h r i t i s S o c i e t y C a t e g o r i z a t i o n , page 148. Table 16 T-Test A n a l y s i s of Health B e l i e f s Model by A r t h r i t i s S o c i e t y C a t e g o r i z a t i o n , page 151. Table 17 T-Test A n a l y s i s of S a t i s f a c t i o n with P r a c t i t i o n e r A t t r i b u t e s by A r t h r i t i s S o c i e t y C a t e g o r i z a t i o n , page 155. Table 18 C r o s s - T a b u l a t i o n s : P a t i e n t S a t i s f a c t i o n with P r a c t i t i o n e r A t t r i b u t e s by A r t h r i t i s S o c i e t y C a t e g o r i z a t i o n , page 157. Table 19 C r o s s - T a b u l a t i o n s : Shared R e s p o n s i b i l i t y Models by A r t h r i t i s S o c i e t y C a t e g o r i z a t i o n , page 159. Table 20 C r o s s - T a b u l a t i o n s : Shared R e s p o n s i b i l i t y Models by A r t h r i t i s S o c i e t y C a t e g o r i z a t i o n (Median S p l i t s ) , page 161. Table 21 T-Test A n a l y s i s of O v e r a l l S a t i s f a c t i o n by A r t h r i t i s S o c i e t y C a t e g o r i z a t i o n , page 164. Table 22 C r o s s - T a b u l a t i o n : S a t i s f a c t i o n with "Kind of S e r v i c e O f f e r e d " by A r t h r i t i s S o c i e t y C a t e g o r i z a t i o n , page 165. i x Table 23 C r o s s - T a b u l a t i o n : S a t i s f a c t i o n with " H a v i n g Needs Met" by A r t h r i t i s S o c i e t y C a t e g o r i z a t i o n , page 167. Table 24 C r o s s - T a b u l a t i o n : Use of A l t e r n a t i v e Treatments by A r t h r i t i s S o c i e t y C a t e g o r i z a t i o n , page 168. X LIST OF FIGURES F i g u r e 1 A v i s u a l r e p r e s e n t a t i o n of the H e a l t h S t r a t e g i c I n t e r a c t i o n Model, page 20. F i g u r e 2 C l a s s i f i c a t i o n matrix o u t l i n i n g the four c a t e g o r i e s of the Shared R e s p o n s i b i l i t y Model, page 35. ACKNOWLEDGEMENTS I would l i k e t o gi v e c o n s i d e r a t i o n to those people who have helped to get me through t h i s year: - to Dr. Mary R u s s e l l , Dr. Kathrynn McCannell, and Mr. P a t r i c k McGowan f o r t h e i r b o u n t i f u l s t o r e of encouragement and advice - t o Dr. Nancy W a x i e r - M o r r i s o n f o r her l a s t m i n u t e rescue - t o M i c h e a l f o r h i s concern and g r e a t p a t i e n c e i n the l a t t e r days of the s t r u g g l e I n a d d i t i o n , r e c o g n i t i o n s h o u l d be g i v e n t o t h e f o l l o w i n g : - to UBC cinnamon buns which s u s t a i n e d me through many a l e c t u r e - to that which i s i n a l l of us, a f o r c e which pushes us to s t r i v e f o r knowledge and understanding THANK YOU, ONE AND ALL 1 INTRODUCTION P a t i e n t a d h e r e n c e t o t h e r a p e u t i c s i s an i s s u e which c o n t i n u e s to be the bane of h e a l t h care p r a c t i t i o n e r s . No p r o f e s s i o n i s f r e e from i t s i n f l u e n c e as s t u d i e s have shown p a t i e n t s t o be n o n a d h e r e n t t o t h e r e c o m m e n d a t i o n s o f p h y s i c i a n s ( N e s s m a n , C a r n a h a n , & N u g e n t , 1 9 8 0 ) , p h y s i o t h e r a p i s t s ( C a r p e n t e r , & D a v i s , 1976), o c c u p a t i o n a l t h e r a p i s t s (Oakes, Ward, Gray, Klauber & Moody, 1970), and p s y c h o l o g i s t s ( T r e p k a , 1 9 8 6 ) . A l t h o u g h no s t u d i e s a r e a v a i l a b l e which document the degree of c l i e n t adherence to s o c i a l work recommendations, i t i s probably s a f e to s t a t e , on the b a s i s of the f i n d i n g s of other h e a l t h care p r a c t i t i o n e r s , t h a t a t l e a s t a modicum o f nonadherence e x i s t s . S o c i a l workers are i n a p o s i t i o n t o not on l y i n f l u e n c e nonadherence i n t h e i r own p r a c t i c e s , but a l s o to a s s i s t other p r o f e s s i o n a l s who a r e p a r t o f t h e h e a l t h c a r e team. T h i s a p p l i e s t o h o s p i t a l s , p s y c h i a t r i c i n s t i t u t i o n s , o u t - p a t i e n t mental h e a l t h c e n t e r s , or any o t h e r s e t t i n g which uses a team m o d a l i t y . Within t h i s modality s o c i a l workers have an important r o l e , as they b r i n g a unique p s y c h o s o c i a l p e r s p e c t i v e to the problem. T h i s p r o v i d e s a p a r t i c u l a r l y apt approach f o r d e a l i n g w i t h nonadherence as r e s e a r c h shows i t to be a complex i s s u e e n c o m p a s s i n g p h y s i o l o g i c a l , p s y c h o l o g i c a l and s o c i a l dimensions (Stone, 1979). T h i s p s y c h o s o c i a l p e r s p e c t i v e i s not only u s e f u l i n developing treatment i n t e r v e n t i o n s , but i s 2 a l s o i n v a l u a b l e i n c o n t i n u i n g r e s e a r c h e f f o r t s to e x p l o r e the many unanswered q u e s t i o n s r e l a t i n g t o t h i s phenomena. The a s p e c t o f t h i s phenomena which i s b e i n g e x p l o r e d i n t h i s r e s e a r c h study i s t h a t of c h r o n i c nonadherence; the complete l a c k of adherence t o a t l e a s t one a s p e c t of treatment f o r extended p e r i o d s of time. By l o o k i n g at a number of v a r i a b l e s normally a s s o c i a t e d with nonadherence t h i s study i s hoping to d i s t i n g u i s h the ways i n which a c h r o n i c nonadherent p o p u l a t i o n i s d i f f e r e n t from a random sample of male a r t h r i t i s p a t i e n t s . ARTHRITIS AND NONADHERENCE - BACKGROUND INFORMATION A r t h r i t i s - What Is I t ? In o r d e r t o u n d e r s t a n d t h e b e h a v i o u r s o f a r t h r i t i s p a t i e n t s i t i s necessary to know something about the d i s e a s e with which they have to l i v e . A r t h r i t i s i s an umbrella term which i n c l u d e s more than 100 d i f f e r e n t k i n d s of r h e u m a t i c d i s e a s e s . Some o f t h e s e s u c h as r h e u m a t o i d a r t h r i t i s , o s t e o a r t h r i t i s , and gout are w e l l known, wh i l e o t h e r types such as a n k y l o s i n g s p o n d y l i t i s and R e i t e r ' s Syndrome are not as p r e v a l e n t . These d i s e a s e s can be d i v i d e d i n t o those which a f f e c t the body's j o i n t s and those which a f f e c t j o i n t - s u p p o r t s t r u c t u r e s (eg. m u s c l e s , tendons and l i g a m e n t s ) ( A r t h r i t i s S o c i e t y , 1986). One commonality amongst a l l t h e s e d i f f e r e n t k i n d s of rheumatic d i s e a s e s i s that there i s no known cure. T h i s means 3 t h a t once people get a r t h r i t i s i t w i l l be with them f o r the r e s t of t h e i r l i v e s . In other words, a r t h r i t i s i s a c h r o n i c d i s o r d e r . That i s not to say, however, t h a t t h e r e are not treatments a v a i l a b l e to help keep symptoms under c o n t r o l . As w e l l , the d i s e a s e o f t e n f l u c t u a t e s i n s e v e r i t y on i t s own a c c o r d . At t h o s e p e r i o d s of time when no symptoms a r e present, the d i s e a s e i s s a i d to be i n 'remission'. P e r i o d s of symptom exa c e r b a t i o n are known as ' f l a r e s ' . The most common symptoms f a c e d by a r t h r i t i s p a t i e n t s a r e p a i n , s t i f f n e s s , f a t i g u e , and s w e l l i n g . I f these symptoms are l e f t u n t r e a t e d they p r o g r e s s i v e l y l e a d to muscle weakness, decreased range of motion, and d e f o r m i t y ( A r t h r i t i s S o c i e t y , 1980). A s e c o n d commonality amongst most t y p e s of r h e u m a t i c d i s e a s e s i s t h a t r e s e a r c h e r s and p r a c t i t i o n e r s s t i l l do not know what causes the d i s e a s e . Some f a c t o r s which have been noted as being l i k e l y c a u s a l agents are h e r e d i t y , c o n g e n i t a l b i r t h d e f e c t s , trauma, and v i r a l a c t i v i t y ( A r t h r i t i s S o c i e t y , 1 9 8 6 ) . Thus, a r t h r i t i s i s a d i s e a s e w h i c h s t i l l has many unanswered q u e s t i o n s . D e f i n i t e u n d e r l y i n g c a u s e s of the d i s e a s e a r e n o t known, an d t r e a t m e n t s a r e s o m e t i m e s i n e f f e c t u a l . Because of the f a c t t h a t t r a d i t i o n a l medicine does not have a l l the answers, many p e o p l e t u r n t o f o l k remedies or unorthodox p r a c t i t i o n e r s f o r h e l p . In a recent American study, K r o n e n f e l d and Wasner (1982) determined that 94% o f t h e i r sample had used a t l e a s t one t y p e o f f o l k 4 treatment. In a d d i t i o n to the use of a l t e r n a t i v e t h e r a p i e s , the l a c k of c o n v e n t i o n a l wisdom a l s o encourages p a t i e n t s to have v a r i e d p e r s o n a l e x p l a n a t i o n s as t o why they have the d i s e a s e . Adherence vs Compliance C u r r e n t l i t e r a t u r e seems d i v i d e d on whether to c o n s i d e r the p a t i e n t ' s e x e c u t i o n of a recommended t h e r a p e u t i c regimen as compliance or adherence. Although seemingly picayune, t h i s d i s t i n c t i o n h i g h l i g h t s t h e d i f f e r i n g v i e w s as t o where r e s p o n s i b i l i t y f o r f o l l o w - t h r o u g h of a p r e s c r i b e d behaviour s h o u l d be p l a c e d . Compliance i m p l i e s t h a t c o n t r o l f o r the decision-making l i e s with the p r a c t i t i o n e r , and that the blame f o r noncompliance i n some way r e s t s with the p a t i e n t . T a y l o r (1979) suggests that medical s t a f f see the i d e a l p a t i e n t r o l e as one of p a s s i v e n e s s and a c q u i e s c e n c e w i t h the e x p e r t ' s recommendations. When the p a t i e n t does not heed t h i s a d v i c e they are s a i d to be noncompliant. Adherence, on the o t h e r hand, i m p l i e s a working-together or c o o p e r a t i o n between the p a t i e n t and the h e a l t h c a r e p r a c t i t i o n e r (Turk, S a l o v e y & L i t t , 1986). T h i s p o i n t of view p l a c e s the r e s p o n s i b i l i t y f o r breakdown on the i n t e r a c t i o n between the p r a c t i t i o n e r and the p a t i e n t , r a t h e r than on e i t h e r of the p r i n c i p a l c h a r a c t e r s . R esearch i s b e g i n n i n g to i n d i c a t e t h at t h i s i n t e r a c t i o n i s i n d e e d the p r i m a r y cause of poor p a t i e n t f o l l o w - t h r o u g h (Stone, 1979). For these reasons the term nonadherence i s 5 deemed the more s u i t a b l e , and w i l l t h e r e f o r e be used i n t h i s paper. The Importance of Nonadherence Adherence i s the degree to which a p a t i e n t f o l l o w s the regimen given to him or her by the h e a l t h care p r a c t i t i o n e r . F a i l u r e to adhere to h e a l t h advice i s dangerous f o r p a t i e n t s , f r u s t r a t i n g f o r p r a c t i t i o n e r s , and a l s o r e p r e s e n t s a l a r g e cost to the h e a l t h care system. Becker and Maiman (1980) d e s c r i b e how nonadherence can set up a c a u s a l l i n k r e s u l t i n g i n a number of consequences. W i t h r e s p e c t t o m e d i c a t i o n s , n o n a d h e r e n c e i n i t i a l l y c an n u l l i f y the t h e r a p e u t i c e f f i c a c y of the treatment. T h i s may l e a d the p a t i e n t to seek h e l p elsewhere r e s u l t i n g i n a two-f o l d e f f e c t . S e r v i c e s a r e d u p l i c a t e d , a nd t h e new p r a c t i t i o n e r may p r e s c r i b e treatments that are c o n t r a i n d i c a t e d by the f i r s t p r a c t i t i o n e r ' s t r e a t m e n t s . Lack of treatment e f f e c t i v e n e s s may l e a d to p a t i e n t d i s s a t i s f a c t i o n , which i n turn may r e s u l t i n a higher degree of p a t i e n t nonadherence. T h i s type of p a t i e n t behaviour can be f r u s t r a t i n g f o r p r a c t i t i o n e r s . C o n s i d e r a b l e time may be spent i n assessment and development of a t h e r a p e u t i c p l a n to then f i n d t h a t the p a t i e n t e i t h e r does not r e t u r n f o r subsequent appointments, or does not f o l l o w the recommendations which have been g i v e n . By the time the p a t i e n t r e t u r n s f o r help i t i s l i k e l y that h i s or her c o n d i t i o n w i l l have worsened, such that treatment becomes 6 more d i f f i c u l t to c a r r y out. In an attempt to determine f i n a n c i a l c o s t , Ausburn (1981) c a l c u l a t e d the p r o p o r t i o n o f h o s p i t a l i z e d p a t i e n t s whose admission to h o s p i t a l was due to nonadherence. Her estimates s u g g e s t t h a t 20% o f t h e a d m i s s i o n s were p r o b a b l y due t o nonadherence to medication regimes. Some i d e a o f the e x t e n t of the problem s u r f a c e d when Marston (1970) reviewed 33 p r e v i o u s l y conducted nonadherence s t u d i e s . S t a t i s t i c a l a n a l y s i s across these s t u d i e s r e v e a l e d a median of 42% nonadherence, with a range of 4 to 92%. These f i g u r e s represent a l a r g e number of medication e r r o r s , missed appointments, and t r e a t m e n t d r o p - o u t s . Thus, not o n l y i s n o n a d h e r e n c e w i d e s p r e a d , b u t i t a l s o h a s i m p o r t a n t r a m i f i c a t i o n s f o r a l l h e a l t h care p r a c t i t i o n e r s . Types of Nonadherence According to Haynes (1976), compliance can be d e f i n e d as "the e x t e n t t o which a p e r s o n ' s b e h a v i o u r c o i n c i d e s w i t h medical or h e a l t h a d v i c e " (p.2). T h i s d e f i n i t i o n i s good as f a r as i t goes, but i t f a i l s to p r o v i d e the nuances which are n e c e s s a r y i n o r d e r t o g e t a c l e a r e r p i c t u r e o f why nonadherence o c c u r s . For example, the d e f i n i t i o n f a i l s to make a d i s t i n c t i o n b e t w e e n i n v o l u n t a r y and v o l u n t a r y nonadherence. I n v o l u n t a r y nonadherence occurs when the c l i e n t f a i l s to f o l l o w a d v i c e , but i s unaware o f t h i s f a i l u r e , or unable to stop i t s occurrence. The c l i e n t who does not come to h i s appointment because he misunderstood the p r a c t i t i o n e r i l l u s t r a t e s t h i s type of nonadherence. V o l u n t a r y nonadherence o c c u r s when the c l i e n t makes a c o n s c i o u s d e c i s i o n not t o f o l l o w the a d v i c e which s/he has been g i v e n . V o l u n t a r y nonadherence can be f u r t h e r s u b d i v i d e d i n t o what Weintraub (1976) c a l l s " i n t e l l i g e n t n o n c o m p l i a n c e " and " c a p r i c i o u s c o m p l i a n c e " . The d i f f e r e n c e between these i s t h a t f o r the f o r m e r , t h e d e c i s i o n t o not a d h e r e i s based on r a t i o n a l reasoning, while the l a t t e r l a c k s t h i s r a t i o n a l b a s i s . Chronic nonadherence i s s i m i l a r to v o l u n t a r y nonadherence i n t h a t t h e r e i s a c o n s c i o u s d e c i s i o n on the p a r t of the p a t i e n t to not adhere to h i s or her t h e r a p e u t i c regime. For as Boehnert and Popkin (1986) s t a t e i n d e s c r i b i n g d i a b e t i c c h r o n i c n o n a d h e r e n t s , " t h e s e a r e n o t i n d i v i d u a l s who o c c a s i o n a l l y f o r g e t to take t h e i r i n s u l i n or who at times may s t r a y from t h e i r d i e t , but r a t h e r ones who c o n s i s t e n t l y and d e l i b e r a t e l y refuse to f o l l o w medical advice with respect t o managing t h e i r d i s e a s e " (p.11). In r e f u s i n g to f o l l o w medical a d v i c e , t h e s e p a t i e n t s c a n be c o n s i d e r e d v o l u n t a r i l y nonadherent. The d i f f e r e n c e between v o l u n t a r y nonadherence and c h r o n i c nonadherence i s t h a t v o l u n t a r y nonadherence r e f e r s to any degree of nonadherence on the p a r t of the i n d i v i d u a l whereas chronic nonadherence only r e f e r s to extreme forms of v o l u n t a r y nonadherence. For example, an i n d i v i d u a l who decides to do her e x e r c i s e s h a l f as o f t e n as she was recommended to do them 8 would be viewed as v o l u n t a r i l y nonadherent. For t h i s woman to be seen as a c h r o n i c nonadherent, she would have to completely cease e x e r c i s i n g . From t h i s d i s c u s s i o n i t can be seen t h a t w h e r e a s c h r o n i c n o n a d h e r e n c e i s a f o r m o f v o l u n t a r y nonadherence, the reverse i s not t r u e . Thus, the hallmark of a person who i s c h r o n i c a l l y nonadherent i s the complete l a c k of adherence to at l e a s t one aspect of h i s or her t h e r a p e u t i c regimen f o r extended p e r i o d s of t i m e . As l i t t l e i s known about t h i s s u b j e c t , the study w i l l use v a r i a b l e s which have been i d e n t i f i e d i n p r e v i o u s research on nonadherence. Nonadherence - Deviance or J u s t i f i e d R e a c t i o n Deviance i s any behaviour which d i f f e r s from that which i s c o n s i d e r e d to be the norm. Accor d i n g to Webster (1979), a norm i s d e f i n e d as "a standard, model, or p a t t e r n f o r a group" (p.1221). Thus, deviance i s any behaviour which d e v i a t e s from a recognized p a t t e r n . T r a d i t i o n a l l y the 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 has f o l l o w e d a f a i r l y d e f i n e d course. Upon e x p e r i e n c i n g c e r t a i n p h y s i o l o g i c a l symptoms or s o c i o p s y c h o l o g i c a l problems the i n d i v i d u a l may decide to see a h e a l t h care p r a c t i t i o n e r . Once i n the presence of the e x p e r t , the i n d i v i d u a l takes on the r o l e of p a t i e n t or c l i e n t . T h i s r o l e e n t a i l s the p a t i e n t s u p p l y i n g w h a t e v e r i n f o r m a t i o n i s r e q u i r e d by t h e p r a c t i t i o n e r , and f o l l o w i n g whatever a d v i c e s/he has been g i v e n . T h i s d e s c r i p t i o n of normative p a t i e n t b e haviour i s s i m i l a r t o the n o t i o n o f " s i c k r o l e " d e s c r i b e d by Parsons (1951). Parsons f e l t that when people became s i c k they were o b l i g a t e d to seek h e l p from a t r a i n e d p r a c t i t i o n e r , and to cooperate w i t h any treatment recommendations p r e s c r i b e d by the expert. By s t a t i n g t h i s r e s p o n s i b i l i t y , Parsons e n s h r i n e d adherence as a normative behaviour expected of anyone who i s s i c k . The n o t i o n of s o c i a l d e v i a t i o n i s d i s c u s s e d by Johnson (1960). He suggests t h a t behaviour i s only d e v i a n t when an i n d i v i d u a l i s conscious that c e r t a i n norms are i n f a c t being v i o l a t e d . With regard to adherence, t h i s would mean that o n l y v o l u n t a r y n o n a d h e r e n c e w o u l d be c o n s i d e r e d as d e v i a n t b e h a v i o u r . I n v o l u n t a r y nonadherence would not be seen as deviant behaviour because i t l a c k s a w i l f u l attempt to engage i n non-normative conduct. A second p o i n t proposed by Johnson i s t h a t d e v i a n t behaviour i s o f t e n d y s f u n c t i o n a l . In order f o r any type of c o o p e r a t i v e i n t e r a c t i o n to progress smoothly, each a c t o r must a c t i n a p r e d i c t a b l e f a s h i o n a c c o r d i n g to h i s or her a l l o t t e d r o l e . I n t h e p a t i e n t - p r a c t i t i o n e r i n t e r a c t i o n one of the reasons why i t i s important f o r the p a t i e n t t o f o l l o w m e d i c a l a d v i c e i s due t o t h e f a c t t h a t subsequent t h e r a p e u t i c recommendations w i l l be based on the p e r c e i v e d outcome of the e a r l i e r a d v i c e . I f p r e v i o u s a d v i c e has not been f o l l o w e d and the p h y s i c i a n i s not aware of t h i s f a c t , t h e r e e x i s t s the p o s s i b i l i t y of harm b e f a l l i n g the p a t i e n t . 10 In t h i s s i t u a t i o n the d y s f u n c t i o n a l r e l a t i o n s h i p between the p a t i e n t and the p r a c t i t i o n e r c o u l d be a t t r i b u t e d to the p a t i e n t ' s d e v i a n t nonadherent behaviour. In a t r a d i t i o n a l sense, the p a t i e n t would have been at f a u l t f o r not f o l l o w i n g normative s i c k r o l e behaviour. That i s , f o r not c o o p e r a t i n g f u l l y with the m i n i s t r a t i o n s of the p h y s i c i a n . Today there i s some q u e s t i o n as to the v a l i d i t y of t h i s i n t e r p r e t a t i o n . P a r t of the reason f o r t h i s u n c e r t a i n t y comes from the f a c t t h a t f o r a norm t o be c o n s i d e r e d as s u c h , i t must e n j o y a widespread consensus. However, what s t u d i e s are i n d i c a t i n g i s that what i s widespread i s the nonadherent behaviour i t s e l f . Thus, by i t s i n c r e a s i n g p r e v a l e n c e , n o n a d h e r e n c e may be i n d i c a t i n g the f a c t t h a t t h e r e i s something wrong wi t h the t r a d i t i o n a l p a t i e n t - p h y s i c i a n r e a l t i o n s h i p . One p o s s i b l e e x p l a n a t i o n proposed by Brody (1980) i s t h a t people are not s a t i s f i e d w i t h t h e i m b a l a n c e o f power i n h e r e n t i n t h i s t r a d i t i o n a l r e l a t i o n s h i p . T h u s , a l t h o u g h p o t e n t i a l l y d y s f u n c t i o n a l , t h e a t t e m p t t o w r e s t power away f r o m p r a c t i t i o n e r s c o u l d be c o n s i d e r e d as a h e a l t h y r e a c t i o n to a p e r c e i v e d l o s s of c o n t r o l on the p a r t of the p a t i e n t . C o n t r o l - An E s s e n t i a l F a c t o r The p o i n t which u n d e r l i e s much of the c u r r e n t d i s c u s s i o n i s that i n the t r a d i t i o n a l medical system the p a t i e n t has very l i t t l e c o n t r o l . Parsons (1951) noted t h i s i n h i s d i s c u s s i o n of the i n s t i t u t i o n a l i z e d e x p e c t a t i o n s of the s i c k r o l e when he 11 s t a t e d , "the s i c k p e r s o n c a n n o t be e x p e c t e d by ' p u l l i n g h i m s e l f together' to get w e l l by an act of d e c i s i o n or w i l l . In t h i s sense a l s o he i s exempted from r e s p o n s i b i l i t y - he i s i n a c o n d i t i o n t h a t must be t a k e n c a r e o f " (p. 437 ). As m e n t i o n e d p r e v i o u s l y , P a r s o n s a l s o f e l t t h a t t h e o n l y o b l i g a t i o n w h i c h the p a t i e n t had was t o c o o p e r a t e w i t h r e c o m m e n d a t i o n s made by t h e p r a c t i t i o n e r . I n t h i s r e l a t i o n s h i p the p r a c t i t i o n e r holds a l o t of power, not o n l y because s/he p r o v i d e s a d i a g n o s i s and a treatment, but a l s o because s/he l e g i t i m i z e s the s i c k n e s s . As a gatekeeper the p h y s i c i a n a c t s by d e c i d i n g who i s i l l and who i s m a l i n g e r i n g . As a p o i n t i n f a c t , many h o s p i t a l emergency departments s t i l l have p r i n t e d 'Dear Employer' forms which employees can use to v a l i d a t e t h e i r i l l n e s s . Brody (1980) suggests that t h i s power d i f f e r e n t i a l o ccurs because of an i n f o r m a t i o n and s o c i a l gap which e x i s t s between the two s i d e s . P r a c t i t i o n e r s have many years of ed u c a t i o n and c l i n i c a l t r a i n i n g , and may f e e l t h a t t h i s knowledge i s too complex to be understood by p a t i e n t s . Other reasons suggested by Brody as to why t h i s i n f o r m a t i o n gap may be d i f f i c u l t t o c l o s e i s t h a t p r a c t i t i o n e r s may re g a r d the task o f p a t i e n t e d u c a t i o n as b e i n g too time-consuming, assume t h a t i t w i l l o n l y make p a t i e n t s a n x i o u s , a nd t h a t p a t i e n t s h a v e p s y c h o l o g i c a l b a r r i e r s to r e c e i v i n g t h i s type of i n f o r m a t i o n . The existence, of a s o c i a l gap has been r a i s e d by Brody (1980) from evidence that shows that p h y s i c i a n s p r o v i d e more i n f o r m a t i o n t o p a t i e n t s who a r e of a h i g h e r s o c i a l c l a s s . T h i s may be due to the idea that p h y s i c i a n s f e e l that p a t i e n t s of a higher s o c i a l c l a s s a l s o tend to be more educated. Having more education they are probably more capable of understanding the c o m p l e x i t i e s of medicine. A second p o i n t r a i s e d by Brody i s that lower c l a s s p a t i e n t s a l s o tend to ask fewer q u e s t i o n s of p h y s i c i a n s and to g e n e r a l l y be l e s s a s s e r t i v e . T h i s i n turn may a l s o account f o r the f a c t that lower c l a s s p a t i e n t s r e c e i v e l e s s i n f o r m a t i o n . In c o n t r a s t to the model of s i c k r o l e behaviour o u t l i n e d by Parsons, a typology of 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 was developed by Szasz and Hollender (1956) based on the degree of c o n t r o l h e l d by each p a r t i c i p a n t . T h e i r t y p o l o g y i n c l u d e s : a c t i v i t y - p a s s i v i t y , g u i d a n c e - c o o p e r a t i o n , and m u t u a l p a r t i c i p a t i o n . The f i r s t of these r e f e r s to s i t u a t i o n s when the p h y s i c i a n has t o a c t out of a p o s i t i o n o f a u t h o r i t y because o f t h e n a t u r e o f t h e d i s e a s e or i n j u r y . Trauma p a t i e n t s i n need of immediate a t t e n t i o n would f a l l i n t o t h i s category. Guidance-cooperation d e s c r i b e s s i t u a t i o n s t h a t are s t i l l a c u t e , but i n which the p a t i e n t i s a t l e a s t a b l e to c o o p e r a t e . B r o d y (1980) s t a t e s t h a t a p a t i e n t who i s i n f e c t i o u s would come under t h i s category. The l a s t type of r e l a t i o n s h i p r e f e r s to a p a r t n e r s h i p which the p h y s i c i a n and p a t i e n t h o l d t o g e t h e r . In t h i s p a r t n e r s h i p the p h y s i c i a n empowers the p a t i e n t to take c o n t r o l of the management of h i s or her own i l l n e s s . T h i s i s most f e a s i b l e with d i s e a s e s 13 which are of a c h r o n i c n ature (eg. a r t h r i t i s , h y p e r t e n s i o n , d i a b e t e s ) . The b e n e f i t of t h i s framework i s that i t sees the r e l a t i o n s h i p as a f l e x i b l e a r r a n g e m e n t t o be m o d i f i e d according to the s e v e r i t y of the i l l n e s s . When p a t i e n t s are capable of t a k i n g more c o n t r o l , the p r a c t i t i o n e r y i e l d s p a r t of h i s or her power i n order to b r i n g about a more e q u i t a b l e , s a t i s f y i n g i n t e r a c t i o n . In comparison, the 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 d e s c r i b e d by Parsons i s much more r i g i d i n t h a t i t takes c o n t r o l away from the p a t i e n t , and l i m i t s the a c t i o n s which can be taken by e i t h e r a c t o r . F i s k e and T a y l o r (1984) i n d i c a t e t h a t i n d i v i d u a l s may r e a c t t o l o s s o f c o n t r o l i n a v a r i e t y o f ways. Common responses i n c l u d e i n f o r m a t i o n seeking, i n c r e a s e d r e a c t i o n s to s t r e s s , reactance and h e l p l e s s n e s s . I n f o r m a t i o n s e e k i n g i s a p r e v a l e n t r e a c t i o n o f i n d i v i d u a l s who e x p e r i e n c e l o s s of c o n t r o l as a r e s u l t of a m e d i c a l i l l n e s s . F a c e d w i t h i n e x p l i c a b l e symptoms, t h e p a t i e n t i s dependent on the p r a c t i t i o n e r f o r guidance. Not only does the p a t i e n t need to know what to do to d e a l with the i l l n e s s , but i n f o r m a t i o n i s a l s o necessary to a s s i s t them i n m a k i n g s e n s e o f t h e e v e n t s t h e y a r e g o i n g t h r o u g h . I n f o r m a t i o n i s important as i t has a c o p i n g f u n c t i o n and a p r e d i c t i v e f u n c t i o n . Coping i s improved because the p a t i e n t i s able to recognize what v a r i o u s symptoms mean, and t h e r e f o r e what a c t i o n s to take i n response to them. P r e d i c t i o n i s b e n e f i c i a l because i t allows the p a t i e n t to p l a n ahead f o r the 14 f u t u r e . When i n f o r m a t i o n i s n o t f o r t h c o m i n g f r o m t h e p r a c t i t i o n e r , p a t i e n t s w i l l attempt to get t h i s need met elsewhere ( F i s k e & T a y l o r , 1984). Books, popular magazines, t e l e v i s i o n , f r i e n d s , r e l a t i v e s , and o t h e r s w i t h t h e same d i s e a s e a l l become p o t e n t i a l s o u r c e s of i n f o r m a t i o n . The danger inherent i n t h i s a c t i v i t y i s that the p a t i e n t p r o b a b l y does not have enough knowledge t o a c c u r a t e l y j u d g e th e v a l i d i t y of t h i s a d v i c e . As a r e s u l t , d e c i s i o n s may be made by the p a t i e n t on the b a s i s of f a u l t y i n f o r m a t i o n . A second r e s p o n s e to l o s s of c o n t r o l i s an i n c r e a s e d r e a c t i o n to s t r e s s . These r e a c t i o n s i n c l u d e p h y s i o l o g i c a l e f f e c t s (eg. i n c r e a s e d a d r e n a l i n a c t i v i t y ) , r e d u c t i o n i n the a b i l i t y to concentrate, and i n c r e a s e d s e l f - r e p o r t s of p a i n or discomfort ( F i s k e & T a y l o r , 1984). These r e a c t i o n s occur when i n d i v i d u a l s face events over which they have no c o n t r o l . The d i f f i c u l t y with t h i s f a c t o r i s that most evidence s u p p o r t i n g i t s e x i s t e n c e comes from l a b o r a t o r y s t u d i e s which submit p a r t i c i p a n t s t o v a r y i n g l e v e l s o f c o n t r o l l a b l e a n d u n c o n t r o l l a b l e n o i s e , or shock. Thus, i t would seem d i f f i c u l t to g e n e r a l i z e these f i n d i n g s to everyday l i f e s i t u a t i o n s . On the other hand, i t seems l o g i c a l to expect people who are not i n c o n t r o l of a p a r t of t h e i r l i f e to be more an x i o u s and impatient. The t h i r d response i n d i c a t e d by F i s k e & T a y l o r (1984) i s that of reactance. Of the forms of reactance mentioned, the two which are most r e l e v a n t to t h i s s i t u a t i o n are anger and/or 15 a g g r e s s i o n , and e x h i b i t i o n of behaviours to re g a i n c o n t r o l . T a y l o r (1979) d e s c r i b e s the "bad p a t i e n t " as the one who demands i n f o r m a t i o n , i s s u s p i c i o u s o f t r e a t m e n t , and who r e a c t s a n g r i l y t o the c a l m i n g e f f o r t s o f s t a f f members. A l t h o u g h l a b e l l e d by h o s p i t a l s t a f f a s d i s r u p t i v e troublemakers, the f a c t of the matter i s that these p a t i e n t s a r e o n l y r e a c t i n g to an environment which i s d e v o i d o f any op p o r t u n i t y f o r s e l f - c o n t r o l . T a y l o r (1979) suggests t h a t the degree to which p a t i e n t s respond to the h o s p i t a l environment w i t h r e a c t a n c e i s dependent on the amount of c o n t r o l which t h e s e same p e o p l e n o r m a l l y h a v e i n t h e i r e v e r y d a y environments. An example of p a t i e n t s e x h i b i t i n g behaviours designed t o r e a s s e r t c o n t r o l i s p r o v i d e d by H a y e s - B a u t i s t a (1976). He found that p a t i e n t s attempt two types of s t r a t e g i e s when they are d i s s a t i s f i e d w i t h c a r e . They may attempt " c o n v i n c i n g s t r a t e g i e s " t o persuade the p r a c t i t i o n e r t h a t treatment i s inadequate, and that changes are necessary. Or p a t i e n t s may attempt "countering s t r a t e g i e s " , such t h a t changes are made to the regimen as the p a t i e n t sees f i t . The l a t t e r s t r a t e g y i s most o f t e n r e s o r t e d to when the former s t r a t e g y has f a i l e d . The l a s t r e s ponse t o l o s s of c o n t r o l i s h e l p l e s s n e s s . H e l p l e s s n e s s can be recognized by an i n a c t i v i t y or a l a c k of e f f o r t to change one's s i t u a t i o n . T a y l o r (1979) suggests that h o s p i t a l p a t i e n t s who a r e c o m p l i a n t and p a s s i v e a r e , i n e f f e c t , i n a s t a t e of h e l p l e s s n e s s . At f i r s t t h i s s t a t e i s marked by a n x i e t y as the p a t i e n t f e e l s caught between wanting more i n f o r m a t i o n , yet being a f r a i d to ask f o r i t . In a study by T a g l i a c o z z o and Mauksch (1972) i t was shown that two-thirds of the p a t i e n t s had needs and c r i t i c i s m s of the h o s p i t a l which t h e y f e l t u n a b l e t o v o c a l i z e . O v e r t i m e c o n t i n u e d h e l p l e s s n e s s may l e a d to d e p r e s s i o n . 17 A MODEL FOR UNDERSTANDING NONADHERENCE S e v e r a l models have been proposed i n an e f f o r t to g a i n an u n d e r s t a n d i n g of why nonadherence o c c u r s . These range from models w h i c h l i s t v a r i a b l e s a s s o c i a t e d w i t h nonadherence {Green, 1980; McGuire, 1980) to more complex models which a l s o attempt to i n c l u d e b e h a v i o r a l , c o g n i t i v e , and a f f e c t i v e d i m e n s i o n s (Cox, 1982; Dracup & M e l e i s , 1982; K e r s e l l & Milsum, 1985). The problem which complicates development of a model i s t h a t t h e r e are over 200 v a r i a b l e s which have been as s o c i a t e d with nonadherence (Stone, 1979). Thus, models must walk a l i n e between being d e t a i l e d enough to provide a broad overview of the s u b j e c t , yet not so i n t r i c a t e t h a t one becomes l o s t i n the d e t a i l s . The model d e s c r i b e d i n t h i s paper has been developed by t h i s a u t h o r and i s based on the H e a l t h T r a n s a c t i o n s Model ( K a s l & Cobb, 1966; S t o n e , 1 9 7 9 ) . C a l l e d t h e H e a l t h I n t e r a c t i o n S t r a t e g y Model, i t f o l l o w s the premise put forward by Stone (1979) that nonadherence a r i s e s from the i n t e r a c t i o n of the p a t i e n t and the p r a c t i t i o n e r . N e i t h e r p a r t y i s f u l l y responsible f o r adherence as a c o o p e r a t i v e e f f o r t i s r e q u i r e d from both. S t o n e (1979) comments on the n o t i o n t h a t a d h e r e n c e behaviour i s the end r e s u l t of a m u l t i - s t a g e p r o c e s s . In the beginning s t a g e the p a t i e n t d e t e c t s some s o r t of symptom development or r e a l i z e s that there i s a problem i n h i s or her 18 l i f e f o r which they a re needing h e l p . Once r e c o g n i t i o n has taken p l a c e , a d e c i s i o n may be made to v i s i t a h e a l t h c a r e p r a c t i t i o n e r . The middle stage of the model focuses on the i n t e r a c t i o n or s e r i e s of i n t e r a c t i o n s which occur between the h e a l t h p r o f e s s i o n a l and the p a t i e n t . The l a s t stage of the model t a k e s p l a c e once the p a t i e n t has r e t u r n e d home, and e i t h e r e x h i b i t s adherence or nonadherence to the recommended t h e r a p e u t i c regime. T h i s outcome can be the r e s u l t of one, or a multitude of f a c t o r s which have occu r r e d at any stage of the p r o c e s s . In keeping with t h i s i d e a , the H e a l t h I n t e r a c t i o n Strategy Model i s d i v i d e d i n t o three stages: p r e - i n t e r a c t i o n , i n t e r a c t i o n , and p o s t - i n t e r a c t i o n (see F i g u r e 1) Ins e r t F i g u r e 1 about here Pre - I n t e r a c t i o n Phase Stone (1979) s t r e s s e s the importance of r e a l i z i n g what each p e r s o n b r i n g s t o t h i s e n c o u n t e r . As the e x p e r t , the he a l t h care p r a c t i t i o n e r i s r e s p o n s i b l e f o r being aware of not o n l y h i s or her own b e l i e f s and e x p e c t a t i o n s , but a l s o the s t a t e d and uns t a t e d b e l i e f s and exp e c t a t i o n s of the p a t i e n t . As he s t a t e s , " i n a sense, e v e r y t h i n g that has ever o c c u r r e d i n the l i v e s of the expert and c l i e n t i s r e l e v a n t to t h e i r i n t e r a c t i o n " (p.45). Four of the study v a r i a b l e s are predominant i n t h i s phase 19 of the model. As can be seen i n Table 1 these v a r i a b l e s a r e d e m o g r a p h i c s , The H e a l t h B e l i e f s M o d e l , t h e p a t i e n t ' s explanatory model, and the nature of the i l l n e s s . I nsert Table 1 about here Numerous s t u d i e s have been c a r r i e d out to determine the r e l a t i o n s h i p between d e m o g r a p h i c s and adherence. On t h e whole, however, f a c t o r s such as age, sex, e d u c a t i o n , r a c e , s o c i o e c o n o m i c s t a t u s , and income have not been f o u n d t o c o r r e l a t e w i t h adherence (Zisook & Gammon, 1981). The o n l y f a c t o r which might be c o n s i d e r e d i s t h a t p a t i e n t s who a r e e l d e r l y may be more f o r g e t f u l (Ley, 1982), and thus prone to i n v o l u n t a r y nonadherence. The H e a l t h B e l i e f s Model and the p a t i e n t ' s e x p l a n a t o r y model are s i m i l a r i n that both are concerned with the e f f e c t s a s s o c i a t e d w i t h an i n d i v i d u a l ' s b e l i e f s about h i s or her i l l n e s s . The d i f f e r e n c e between the two models i s that each h i g h l i g h t s t h e i m p o r t a n c e o f d i f f e r e n t a s p e c t s o f t h e i n d i v i d u a l ' s b e l i e f s t r u c t u r e . The H e a l t h B e l i e f s Model (Becker, 1976; Hochbaum, 1958; Maiman & Becker, 1974) was o r i g i n a l l y developed to p r e d i c t the acceptance of p r e v e n t i v e h e a l t h behaviours, and was adapted by Becker to p r e d i c t adherence behaviours. T h i s model works on the b a s i s of value-expectancy theory ( K e r s e l l & Milsum, 1985). 20 F i g u r e 1. A v i s u a l r e p r e s e n t a t i o n of the H e a l t h S t r a t e g i c I n t e r a c t i o n Model P a t i e n t ' s Demographics t t + 4-P r e - I n t e r a c t i o n P a t i e n t ' s Nature V a r i a b l e s H e a l t h t of +• -»• B e l i e f s 4- the Model I l l n e s s t + 4, + P a t i e n t ' s Explanatory Model 4-P a t i e n t ' s S a t i s f a c t i o n With P r a c t i t i o n e r A t t r i b u t e s I n t e r a c t i o n t t 4, + V a r i a b l e s I n t e r a c t i o n V a r i a b l e s O v e r a l l Shared P a t i e n t Respon-S a t i s f a c t i o n «- -*• s i b i l i t y A t t i t u d e s of S i g n i f i c a n t Others Post- f + +• 4-P a t i e n t ' s Use P a t i e n t ' s Problems of Unorthodox with the Home Treatments •«- -+ E x e r c i s e Program Table 1 H e a l t h S t r a t e g i c I n t e r a c t i o n Model: P r e - I n t e r a c t i o n Phase V a r i a b l e s Demographics Age L i v i n g S i t u a t i o n M a r i t a l Status E t h n i c O r i g i n L e v e l of Education Income Employment Status The He a l t h B e l i e f s Model Per c e i v e d S e v e r i t y P e r c e i v e d S u s c e p t i b i l i t y P e r c e i v e d B e n e f i t s P e r c e i v e d Costs ( t a b l e c o n t i n u e s ) P a t i e n t ' s Explanatory Model Nature of the I l l n e s s S e v e r i t y Impact Duration T h i s means that the p a t i e n t ' s adherence behaviour i s p r e d i c t e d a c c o r d i n g to the value of the outcome to the i n d i v i d u a l , and the e x p e c t a t i o n the i n d i v i d u a l has as to whether the behaviour w i l l produce the d e s i r e d outcome. The H e a l t h B e l i e f s Model suggests that adherence to a medical regimen depends on f o u r f a c t o r s : p e r c e i v e d s u s c e p t i b i l i t y , p e r c e i v e d s e v e r i t y , e v a l u a t i o n of the advocated h e a l t h b e h a v i o u r , and a cue t o m o t i v a t i o n (Becker, 1976). P e r c e i v e d s u s c e p t i b i l i t y i s c o n c e r n e d w i t h t h e i n d i v i d u a l ' s b e l i e f i n the accuracy of the d i a g n o s i s , or with h i s or her b e l i e f s about r e s u s c e p t i b i l i t y ( i . e with a d i s e a s e such as cancer or a r t h r i t i s which at present i s i n r e m i s s i o n , but which may reoccur i n the f u t u r e ) . P e r c e i v e d s e v e r i t y i s t h e i n d i v i d u a l ' s s u b j e c t i v e p e r c e p t i o n s o f t h e f u t u r e s e r i o u s n e s s o f h i s or h e r d i s e a s e . E v a l u a t i o n o f t h e advocated h e a l t h behaviour encompasses both the i n d i v i d u a l ' s p e r c e p t i o n s of c o s t s and b e n e f i t s a c c r u i n g from f o l l o w - t h r o u g h of a recommended h e a l t h behaviour. Some p e r c e i v e d b a r r i e r s to treatment, which s t u d i e s have l i n k e d to nonadherence, i n c l u d e f e a r of p a i n or d i s c o m f o r t , extent to which new p a t t e r n s of behaviour must be adopted, complexity of treatment, d u r a t i o n of t r e a t m e n t , and s i d e - e f f e c t s a s s o c i a t e d w i t h t r e a t m e n t (Becker, 1976). Perceived b e n e f i t s , a l s o l i n k e d to adherence, i n c l u d e c l i e n t ' s b e l i e f i n the c a p a b i l i t y of the p h y s i c i a n and/or the e f f i c a c y of treatment (Becker, 1976). The l a s t element, cues to m o t i v a t i o n , r e f e r s to the idea that some type 25 o f a s t i m u l u s or t r i g g e r i s n e c e s s a r y i n order to c a t a l y z e a p p r o p r i a t e h e a l t h behaviour. T h i s t r i g g e r a c t s by making the i n d i v i d u a l c o n s c i o u s o f the h e a l t h t h r e a t which they a r e f a c i n g ( D a v i d h i z a r , 1983). For example, Da v i d h i z a r suggests that awareness of one's s u s c e p t i b i l i t y to a severe d i s e a s e i s a s u f f i c i e n t m o t i v a t i o n a l cue. T h i s i s c o r r o b o r a t e d by Rosenstock (1966) who p o i n t s out t h a t v i s i b l e symptomatology i s a common stim u l u s of h e a l t h behaviours. Rosenstock (1974) f u r t h e r c l a r i f i e s t h i s p o i n t when he s t a t e s , "the combined l e v e l s of s u s c e p t i b i l i t y and s e v e r i t y p r o v i d e d the energy or f o r c e to a c t and the p e r c e p t i o n o f b e n e f i t s ( l e s s b a r r i e r s ) p r o v i d e d a p r e f e r r e d p a t h o f a c t i o n " ( p . 3 3 2 ) . T h u s , m o t i v a t i o n cues are not a separate element, but r a t h e r p o i n t to the idea that some combination of p e r c e i v e d s u s c e p t i b i l i t y and s e v e r i t y a r e n e c e s s a r y i n o r d e r t o c a t a l y z e h e a l t h b e h a v i o u r . One of the b e n e f i t s o f t h i s model i s t h a t i t h i g h l i g h t s the powerful e f f e c t which b e l i e f s have on adherence behaviour. The i m p o r t a n c e o f b e l i e f s i s a l s o e v i d e n t i n any d i s c u s s i o n of the explanatory model. Explanatory model i s a term d e v e l o p e d by Kleinman (1980) t o d e s c r i b e the s e t of b e l i e f s which i n d i v i d u a l s h o l d about t h e i r i l l n e s s . These b e l i e f s or p e r s o n a l e x p l a n a t i o n s d e v e l o p as a r e s u l t o f i n t e r p e r s o n a l , f a m i l i a l and c u l t u r a l e x p e r i e n c e s . I t i s p r o b a b l y f a i r t o say t h a t the h e a l t h b e l i e f s o f a young, C a u c a s i a n , m a l e e x e c u t i v e i n V a n c o u v e r w o u l d d i f f e r 26 s i g n i f i c a n t l y f r o m the b e l i e f s o f an e l d e r l y , r e c e n t l y immigrated, Jamaican woman l i v i n g i n the same c i t y . K l e i n m a n (1980) c o n t e n d s t h a t i t i s n e c e s s a r y t o d i f f e r e n t i a t e between disease and i l l n e s s . He d e f i n e s d i s e a s e as an abnormality i n one's p h y s i o l o g i c a l and/or p s y c h o l o g i c a l p r o c e s s e s . T h i s i s c o n t r a s t e d w i t h i l l n e s s which i s the i n d i v i d u a l ' s p s y c h o s o c i a l e x p e r i e n c e of d i s e a s e , and the meanings which a r e used t o e x p l a i n the d i s e a s e ( K l e i n m a n , 1980). These meanings are c o l l e c t i v e l y c a l l e d the p a t i e n t ' s e x p l a n a t o r y model. In a d d i t i o n to p r o v i d i n g a framework f o r und e r s t a n d i n g d i s e a s e , c u l t u r a l b e l i e f s a l s o to some degree d i c t a t e coping responses to d i s e a s e . How we understand and cope with d i s e a s e , i n t u r n i n f l u e n c e s the meaning we g i v e to our symptoms, who we go to f o r help, and the e x p e c t a t i o n s we have of what that help should look l i k e (Kleinman, E i s e n b e r g , & B y r o n , 1 9 7 8 ) . In t h e same way t h a t p a t i e n t s h a v e e x p l a n a t o r y m o d e l s , p r a c t i t i o n e r s a l s o have c o g n i t i v e f rameworks w h i c h a r e b a s e d on t h e o r e t i c a l t r a i n i n g and c l i n i c a l e x p e r i e n c e . These frameworks or explanatory models a i d t h e p r a c t i t i o n e r i n t h e d i a g n o s i s and t r e a t m e n t o f di s e a s e . Kleinman (1980) suggests that adherence i s r e l a t e d t o the degree to which p a t i e n t and p r a c t i t i o n e r e x p l a n a t o r y models c o n v e r g e . The c l o s e r t h e c o n v e r g e n c e , the g r e a t e r t h e l i k e l i h o o d of the p a t i e n t e x h i b i t i n g adherent behaviour. With r e s p e c t t o both the H e a l t h B e l i e f s Model and the 27 p a t i e n t ' s explanatory model, any nonadherence which may occur as a r e s u l t of these f a c t o r s can be con s i d e r e d as v o l u n t a r y nonadherence. With h e a l t h b e l i e f s nonadherence may r e s u l t from e i t h e r a l a c k o f m o t i v a t i o n ( i . e low s u s c e p t i b i l i t y and/or low s e v e r i t y ) , or from a l a c k of d i r e c t i o n ( i . e few pe r c e i v e d b e n e f i t s and/or many b a r r i e r s ) . With the p a t i e n t ' s e x p l a n a t o r y m o d e l , n o n a d h e r e n c e r e s u l t s f r o m a l a c k o f agreement between the p a t i e n t and the p r a c t i t i o n e r along key f a c t o r s r e l a t e d to di s e a s e d i a g n o s i s and treatment. The l a s t v a r i a b l e t o be d i s c u s s e d f r o m t h e p r e -i n t e r a c t i o n phase i s the nature of the i l l n e s s . In g e n e r a l , i t has been found that adherence i s higher when the i l l n e s s i s p e r c e i v e d t o be s e v e r e and a c u t e , than when i t i s c h r o n i c ( S a c k e t t & Haynes, 1976; Z i s o o k & Gammon, 1981). S t u d i e s a c t u a l l y show that with a given p o p u l a t i o n , as the d u r a t i o n of treatment i n c r e a s e s the degree of adherence decreases (Bloom, C e r k o n e y & H a r t , 1980). T r e p k a (1986) s t u d i e d 118 o u t -p a t i e n t s a t a ps y c h o l o g y c l i n i c . She found t h a t over time appointment-keeping decreased q u i t e d r a m a t i c a l l y . Her f i g u r e s show t h a t 11% of the p a t i e n t s d i d not a t t e n d t h e i n i t i a l a ssessment, and by the time t r e a t m e n t had been c o m p l e t e d , 40.7% of the i n i t i a l p o p u l a t i o n had dropped out. The combined e f f e c t o f t h e s e v a r i a b l e s ; t h a t i s , d e m o g r a p h i c s , t h e H e a l t h B e l i e f s M o d e l , t h e p a t i e n t ' s e x p l a n a t o r y model, and the n a t u r e of the i l l n e s s ; i s the p r o d u c t i o n i n the c l i e n t of a s e t of a f f e c t i v e , b e h a v i o r a l , 28 c o g n i t i v e a nd m o t i v a t i o n a l m a n i f e s t a t i o n s . T h e s e a r e c o n s t a n t l y i n t e r a c t i n g w i t h each o t h e r , and i n combin a t i o n w i t h o n g o i n g i n p u t s ( e g . t h e i n t e r a c t i o n w i t h t h e p r a c t i t i o n e r ) form t h e b a s i s f o r the c l i e n t ' s subsequent adherent behaviour. To i l l u s t r a t e t h i s i n t e r a c t i o n c o n s i d e r the example of Mr. A. who i s a middle-aged p r o f e s s i o n a l . He i s not e n t i r e l y sure, but b e l i e v e s that h i s a r t h r i t i s may have been cause by the c o m b i n a t i o n of a c o n g e n i t a l d e f o r m i t y , and the s t r a i n which was put on h i s j o i n t s as the r e s u l t o f h i s a c t i v e p a r t i c i p a t i o n i n s p o r t s as a young man ( c o g n i t i v e a p p r a i s a l ) . Although he i s upset ( a f f e c t i v e response) by h i s d e b i l i t a t i o n at an e a r l y age, he b e l i e v e s that the A r t h r i t i s S o c i e t y w i l l be a b l e to c o n t r o l h i s symptoms ( c o g n i t i v e a p p r a i s a l ) . T h i s makes him somewhat happier ( a f f e c t i v e response) because he can see hims e l f being a b l e to l e a d a r e l a t i v e l y normal l i f e i n the f u t u r e . At the present he i s i n a l o t of p a i n , and thus i s a n x i o u s t o r e c e i v e h e l p i n d e a l i n g w i t h h i s i l l n e s s ( m o t i v a t i o n ) . In t h i s s c e n a r i o the p r a c t i t i o n e r i s going to be d e a l i n g w i t h a g e n t l e m a n who i s l i k e l y t o be h i g h l y motivated to f o l l o w whatever suggestions are made to him. I n t e r a c t i o n Phase The p r e - i n t e r a c t i o n phase looks at the c h a r a c t e r i s t i c s which the p a t i e n t b r i n g s to the i n t e r v i e w . Now that t h i s i s understood, i t i s important to understand the dynamics of the 29 i n t e r a c t i o n which occurs when the p a t i e n t and the p r a c t i t i o n e r meet.. T h i s i s a p t l y c a l l e d the i n t e r a c t i o n phase. Du r i n g t h i s phase t h r e e elements have been c o n s i d e r e d necessary f o r f a c i l i t a t i n g p a t i e n t adherence. These are s a t i s f a c t i o n with p r a c t i t i o n e r a t t r i b u t e s , s h a red r e s p o n s i b i l i t y , and o v e r a l l s a t i s f a c t i o n (see Table 2). Ins e r t Table 2 about here S a t i s f a c t i o n with p r a c t i t i o n e r a t t r i b u t e s r e f e r s to th r e e elements of the 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 which a r e f e l t t o be r e l a t e d t o a d h e r e n c e . These a t t r i b u t e s a r e c o m m u n i c a t i o n , a f f e c t i v e c a r e , and t e c h n i c a l competence (Stone, 1979). Ley (1982) who c o n d u c t e d e x t e n s i v e r e s e a r c h on t h e r e l a t i o n s h i p between communication and adherence i n d i c a t e s t h r e e f a c t o r s which are c r i t i c a l to e f f e c t i v e communication: t r a n s m i s s i o n o f i n f o r m a t i o n from d o c t o r to p a t i e n t , p a t i e n t r e c a l l , and the t r a n s m i s s i o n o f i n f o r m a t i o n from p a t i e n t to doctor. Commonsense d i c t a t e s that i f a p a t i e n t i s not c l e a r about a l l a s p e c t s o f t h e t h e r a p e u t i c r e g i m e , e r r o r s w i l l be i n e v i t a b l e . As w e l l , e r r o r s w i l l a l s o occur i f the c l i e n t knows what to do, but then f o r g e t s those i n s t r u c t i o n s . Both of t h e s e f a c t o r s have been i d e n t i f i e d by S v a r s t a d (1976). 30 Table 2 I n t e r a c t i o n Phase V a r i a b l e s S a t i s f a c t i o n with P r a c t i t i o n e r A t t r i b u t e s Communication A f f e c t i v e Care T e c h n i c a l Competence Shared R e s p o n s i b i l i t y Moral Model M e d i c a l Model Compensatory Model Enlightenment Model O v e r a l l S a t i s f a c t i o n 31 She found that one week f o l l o w i n g a v i s i t to the d o c t o r , 52% of the p a t i e n t s made a t l e a s t one e r r o r i n d e s c r i b i n g t h e i r d o c t o r ' s recommendations f o r treatment. L a s t l y , e r r o r s w i l l a l s o o c c u r i f t h e p a t i e n t d o e s n o t c o m m u n i c a t e f u l l i n f o r m a t i o n to the p r a c t i t i o n e r . In one study i t was found that p a t i e n t s d i d not mention 65% of t h e i r e x p e c t a t i o n s , and f a i l e d to i n d i c a t e 76% of t h e i r main worries (Korsch, G o z z i & F r a n c i s , 1968). When the p r a c t i t i o n e r makes a d i a g n o s i s and p r e s c r i b e s a t r e a t m e n t w i t h o u t t a k i n g t h e u n d i s c l o s e d i n f o r m a t i o n i n t o c o n s i d e r a t i o n , the p a t i e n t may f e e l t h a t the treatment c o u l d not be c o r r e c t because the w i t h h e l d problem remains unexplained (Becker & Maiman, 1980). In the f i r s t two i n s t a n c e s d e s c r i b e d i n the p r e v i o u s p a r a graph nonadherence i s i n v o l u n t a r y because cause can be a t t r i b u t e d t o l a c k o f knowledge i n t h e f i r s t c a s e , and f o r g e t f u l n e s s i n the second. In the l a s t case nonadherence i s a v o l u n t a r y d e c i s i o n on the p a r t of the p a t i e n t due to h i s or her d i s s a t i s f a c t i o n with the adequacy of the d i a g n o s i s and treatment regimen. As mentioned e a r l i e r , c u r r e n t t h i n k i n g p l a c e s r e s p o n s i b i l i t y f o r adherence on both the p a t i e n t and p r a c t i t i o n e r . The p a t i e n t i s r e s p o n s i b l e f o r a s k i n g f o r c l a r i f i c a t i o n when unsure of what has been s t a t e d by the p r a c t i t i o n e r . The p r a c t i t i o n e r i s r e s p o n s i b l e f o r e l i c i t i n g i n f ormation from, and i n p r o v i d i n g c l e a r , c o n c i s e i n f o r m a t i o n back to the p a t i e n t . The second p r a c t i t i o n e r a t t r i b u t e which has been l i n k e d 32 to adherence i s the c l i e n t ' s p e r c e p t i o n of the p r a c t i t i o n e r ' s l e v e l of a f f e c t i v e c a r e . A f f e c t i v e care has been d e f i n e d by r e s e a r c h e r s a c c o r d i n g to two main parameters. The f i r s t of these r e l a t e s to the type of atmosphere which the p r a c t i t i o n e r c r e a t e s . Is the tone formal or informal? Is the p r a c t i t i o n e r open or c l o s e d to d i s c u s s i o n ? Does the p r a c t i t i o n e r e v i n c e p a t i e n c e or impatience? Does the p r a c t i t i o n e r g i v e o f f an a i r of warmth and f r i e n d l i n e s s , or i s s/he c o l d and b rusque? G a r r i t y (1981) s t a t e s the i m p o r t a n c e of the p r a c t i t i o n e r o f f e r i n g e m o t i o n a l s u p p o r t w h i c h e n t a i l s s y m p a t h y , un d e r s t a n d i n g , and encouragement. He a l s o mentions the work S v a r s t a d (1974) has done on a p p r o a c h a b i l i t y , which i s "an amalgamation of s i g n s of f r i e n d l i n e s s , i n t e r e s t , and r e s p e c t f o r the p a t i e n t " (p.220). The second f e a t u r e of a f f e c t i v e care i s the a b i l i t y of the p r a c t i t i o n e r t o reduce the n e g a t i v e a f f e c t i v e a r o u s a l which the p a t i e n t may be e x p e r i e n c i n g . Cox (1982) s t a t e s t h a t r e d u c t i o n of a r o u s a l can be c a r r i e d out t h r o u g h a c o m b i n a t i o n of r e a s s u r a n c e and o t h e r a n x i e t y -reducing i n t e r v e n t i o n s . The l a s t element of the i n t e r a c t i o n phase i s the c l i e n t ' s p e r c e p t i o n of the p r a c t i t i o n e r ' s competence. DiMatteo and Hays (1980) s t u d i e d o v e r a l l p a t i e n t s a t i s f a c t i o n with r e s p e c t to a number of p r a c t i t i o n e r c h a r a c t e r i s t i c s , one of which was t e c h n i c a l competence. T h e i r f i n d i n g s suggest t h a t c l i e n t ' s p e r c e p t i o n o f p r a c t i t i o n e r competence i s i m p o r t a n t , but d i f f i c u l t to separate from the p a t i e n t ' s p e r c e p t i o n of 33 a f f e c t i v e c a r e . The second element of the i n t e r a c t i o n phase i s s h a r e d r e s p o n s i b i l i t y . B a s i c a l l y s h a r e d r e s p o n s i b i l i t y r e f e r s t o attempts made by the p r a c t i t i o n e r to i n c l u d e p a t i e n t s i n the decision-making process or to share c o n t r o l . I n c l u d i n g p a t i e n t s i n the d e c i s i o n - m a k i n g p r o c e s s i s a form of s h a r i n g c o n t r o l . As d e f i n e d by S c h o r r and R o d i n (1982), c o n t r o l i s "the a b i l i t y t o have an impact on an outcome" (p.160). P e r c e i v e d c o n t r o l has been shown to be b e n e f i c i a l i n a number o f ways: i t i n c r e a s e s p a t i e n t s a t i s f a c t i o n (Liem, 1975), i t reduces the s t r e s s a s s o c i a t e d with an a v e r s i v e event (Thompson, 1981), and i t a l s o i n c r e a s e s adherence to medical regimes ( E i s e n t h a l , Emery, Lazare & Udin, 1979). Although c o n t r o l i s u s u a l l y advantageous, some s t u d i e s i n d i c a t e that r a t h e r than m i t i g a t i n g s t r e s s , c o n t r o l a c t u a l l y promotes i t (Thompson, 1981). She suggests that an important f a c t o r t o be taken i n t o c o n s i d e r a t i o n i s the meaning which c o n t r o l has f o r t h e i n d i v i d u a l . In some s i t u a t i o n s an i n d i v i d u a l may b e l i e v e that o t h e r s are b e t t e r a b l e to look a f t e r h i s / h e r problems, and thus l e s s p e r s o n a l c o n t r o l w i l l be d e s i r e d . One t h e o r y which e l a b o r a t e s on t h i s e x p l a n a t i o n was d e v e l o p e d by Brickman, R a b i n o w i t z , K a r u z a , C o a t e s , Cohn & Kidder (1982). Known as the models of h e l p i n g and coping, i t i s u s e d t o e x p l a i n t h e b e h a v i o u r s o f b o t h h e l p e r s and r e c i p i e n t s of a i d . Brickman et a l . f e l t t h a t i n d i v i d u a l s c o u l d 34 be c l a s s i f i e d according to the degree of r e s p o n s i b i l i t y they take f o r t h e i r problem. The concept of r e s p o n s i b i l i t y i s then s u b - d i v i d e d i n t o the e x t e n t of s e l f - b l a m e f o r the o r i g i n of the problem, and the e x t e n t of c o n t r o l taken f o r f i n d i n g a s o l u t i o n t o the problem. As an example, consi d e r a middle-aged woman who has j u s t become s i c k with a c o l d . She may f e e l that she has brought the c o l d upon h e r s e l f from having stood i n the r a i n on the p r e v i o u s day (High S e l f - B l a m e ) , or she might think that she i s not to blame as everyone at the o f f i c e had a c o l d t h i s week, and so she must have caught i t from one of them (Low S e l f - B l a m e ) . In the same way, she may b e l i e v e t h a t she c a n make i t go away by t a k i n g V i t a m i n C ( H i g h C o n t r o l ) , or she could f e e l t h a t she has no c o n t r o l as i t w i l l go away once i t has run i t s course (Low C o n t r o l ) . From these d i s t i n c t i o n s a four c e l l matrix can be developed (see F i g u r e 2). At any p o i n t i n time an i n d i v i d u a l can be c a t e g o r i z e d a c c o r d i n g t o one of these four models. Inser t F i g u r e 2 about here S i m i l a r l y , h e l p e r s can a l s o be c l a s s i f i e d a c c o r d i n g t o where t h e y p l a c e r e s p o n s i b i l i t y f o r p r o b l e m blame and s o l u t i o n . By u s i n g the term ' h e l p e r s ' , r e f e r e n c e i s b e i n g made not o n l y to i n d i v i d u a l p r a c t i t i o n e r s , but a l s o programs (e.g A.A, weightwatchers) , and systems ( i . e h o s p i t a l s , s o c i a l 35 F i g u r e 2. C l a s s i f i c a t i o n matrix o u t l i n i n g the four c a t e g o r i e s of the Shared R e s p o n s i b i l i t y Model. 36 Degree of s e l f - r e s p o n s i b i l i t y f o r s o l u t i o n High Low Moral Enlightenment Degree Model Model of s e l f -blame Compensatory Medical f o r Model Model problem 37 a g e n c i e s , government m i n i s t r i e s ) . The the o r y s uggests t h a t the degree of c o n c u r r e n c e between the i n d i v i d u a l ' s and the p r a c t i t i o n e r ' s adopted model can be used to help p r e d i c t the outcome o f t h e h e l p i n g r e l a t i o n s h i p . K a r u z a , Z e v o n , Rabinowitz & Brickman (1982) suggest that problems are s o l v e d most q u i c k l y , and e f f e c t i v e l y when t h e r e i s a match or c o m p a t i b i l i t y between the adopted models of both the r e c i p i e n t and h e l p e r . I t has been f u r t h e r s u g g e s t e d t h a t when r e c i p i e n t / h e l p e r models are incompatible, the c l i e n t may r e a c t by s e e k i n g h e l p e l s e w h e r e (Conn, 1983). A l e s s s e v e r e r e a c t i o n t o model i n c o m p a t i b i l i t y might be some degree of nonadherence on the p a r t of the p a t i e n t . The l a s t element of the i n t e r a c t i o n phase i s o v e r a l l s a t i s f a c t i o n . According to L i n d e r - P e l z and Str e u n i n g (1985), s a t i s f a c t i o n i s an a t t i t u d e which combines b o t h a thought p r o c e s s and a f f e c t i v e e v a l u a t i o n . Thus, s a t i s f a c t i o n i s not only based on how the p a t i e n t f e e l s about the p r a c t i t i o n e r , but what th e y t h i n k about the i n t e r a c t i o n which has j u s t o c c u r r e d . O v e r a l l s a t i s f a c t i o n has been shown i n p r e v i o u s s t u d i e s to be r e l a t e d to c l i e n t adherence behaviours (Haynes, Taylor & Sackett, 1979; Ley, 1982). Post - I n t e r a c t i o n Phase In t h i s phase two b a s i c processes are o c c u r r i n g . F i r s t of a l l , the c l i e n t i s l e a v i n g the p r a c t i t i o n e r with a c e r t a i n l e v e l of m o t i v a t i o n to adhere to the p r a c t i t i o n e r ' s 38 recommendations. Cox (1982) argues that m o t i v a t i o n must a l s o be considered i n r e l a t i o n to the c l i e n t ' s c o g n i t i v e a p p r a i s a l a n d a f f e c t i v e r e s p o n s e t o t h e s i t u a t i o n due t o t h e i n t e r r e l a t e d n e s s of each of these f a c t o r s . Cox suggests that the p a t i e n t s make a c o g n i t i v e a p p r a i s a l of the f o l l o w i n g three elements; t h e i r c u r r e n t h e a l t h s t a t u s , the treatments which are a v a i l a b l e to d e a l with t h e i r h e a l t h s t a t e , and the nature of t h e i r r e l a t i o n s h i p with the h e a l t h care p r a c t i t i o n e r . She goes on to s t a t e t h a t each of these c o g n i t i o n s may have an a t t e n d a n t a f f e c t i v e r e s p o n s e , and these i n combination are r e l a t e d to m o t i v a t i o n . For example, a p h y s i o t h e r a p i s t may recommend a c e r t a i n type of e x e r c i s e to a male p a t i e n t . The p a t i e n t knows someone who has t r i e d t h i s e x e r c i s e i n t h e p a s t , b u t who f o u n d i t t o be p a i n f u l . Therefore, when the p r a c t i t i o n e r recommends t h i s treatment the p a t i e n t may be a f r a i d o f t r y i n g t h i s e x e r c i s e h i m s e l f ( a f f e c t i v e r e s p o n s e ) as he t h i n k s of how much p a i n t h e e x e r c i s e has caused h i s f r i e n d i n the p a s t . As a r e s u l t he w i l l not be very motivated to t r y t h i s e x e r c i s e h i m s e l f . The s e c o n d p r o c e s s o c c u r r i n g i n the p o s t - i n t e r a c t i o n phase i s a f u r t h e r set of v a r i a b l e s i n f l u e n c i n g the c l i e n t ' s m o t i v a t i o n t o e x h i b i t adherent b e h a v i o u r . These v a r i a b l e s i n c l u d e problems with the home e x e r c i s e program, a t t i t u d e s of s i g n i f i c a n t o t h e r s , and use of unorthodox t r e a t m e n t s (see Table 3). 39 I n s e r t Table 3 about here With regards to problems with the home e x e r c i s e program, S c h u l t z (1980) o u t l i n e s a number of f a c t o r s r e g a r d i n g the treatment regimen which v a r i o u s r e s e a r c h e r s have r e l a t e d t o nonadherence. She s t a t e s t h a t as the degree of b e h a v i o u r change r e q u i r e d of the p a t i e n t i n c r e a s e s , adherence decreases. S i m i l a r l y , as complexity and d u r a t i o n of the treatment regimen i n c r e a s e s , adherence d e c r e a s e s . L a s t l y , severe s i d e - e f f e c t s a s s o c i a t e d w i t h the treatment w i l l a l s o cause a decrease i n adherence behaviour. S o c i a l support has been proposed by many r e s e a r c h e r s to be an i n t e g r a l p a r t of adherence behaviour ( B l a c k w e l l , 1979; Haynes, T a y l o r & Sackett, 1979; Levy, 1983). Becker and Green (1975) suggest that f r i e n d s and f a m i l y p r o v i d e support on two major l e v e l s : dependency and f o r m a t i o n of norms. Many i n d i v i d u a l s are dependent on t h e i r s o c i a l network to p r o v i d e d i r e c t a s s i s t a n c e i n f a c i l i t a t i n g adherence behaviour. Rides t o a p p o i n t m e n t s a n d t h e l e n d i n g o f money t o pay f o r p r e s c r i p t i o n s would both be c o n s i d e r e d types of d i r e c t a s s i s t a n c e . Formation of norms r e f e r s to the a t t i t u d e s and b e l i e f s h e l d by v a r i o u s members of the s o c i a l network, and how these norms are t r a n s m i t t e d to the i n d i v i d u a l . Thus, the 40 Table 3 P o s t - I n t e r a c t i o n Phase V a r i a b l e s A t t i t u d e s of S i g n i f i c a n t Others Use of Unorthodox Treatments Problems with the Home E x e r c i s e Program 41 r e a c t i o n s of s i g n i f i c a n t others to the treatment regimen are important because they can h e l p t o shape the response of the p a t i e n t to h i s or her own treatment. From the p o i n t of view of the h e a l t h care p r a c t i t i o n e r , f a m i l i e s have the p o t e n t i a l to reward good s e l f - c a r e b e h a v i o u r , and to e x t i n g u i s h poor behaviour ( B l a c k w e l l , 1979). The l a s t f a c t o r to be d i s c u s s e d i s the use of unorthodox treatments. Although no s t u d i e s c o u l d be found which i d e n t i f y use o f a l t e r n a t i v e t h e r a p i e s as a cause of nonadherence, c i r c u m s t a n t i a l e v i d e n c e p o i n t s t o the p o s s i b l e c o n n e c t i o n between t h e s e two v a r i a b l e s . K r o n e n f e l d and Wasner (1982) i n d i c a t e t h a t many a r t h r i t i s p a t i e n t s r e s o r t t o a l t e r n a t i v e t h e r a p i e s because t r a d i t i o n a l m e d i c a l treatments are o f t e n i n e f f e c t u a l on a long-term b a s i s . As orthodox medicine does not have d e f i n i t i v e answers, p a t i e n t s look f o r h e l p elsewhere. E v i d e n c e f o r t h i s phenomena comes from the K r o n e n f e l d and Wasner (1982) study which showed t h a t only 5% of the p a t i e n t s used a l t e r n a t i v e t h e r a p i e s p r i o r to c o n t a c t i n g a p h y s i c i a n . T h i s i s i n c o m p a r i s o n t o 83% o f t h e p a t i e n t s who s o u g h t a l t e r n a t i v e t h e r a p i e s a f t e r b e i n g i n a p h y s i c i a n ' s care f o r more than one year. Although these f i n d i n g s are not d i r e c t l y r e l a t e d t o n o n a d h e r e n c e , i t w o u l d seem p l a u s i b l e t h a t nonadherence might i n c r e a s e as p a t i e n t s became more d i s i l l u s i o n e d with orthodox forms of treatment. In summary, ten v a r i a b l e s have been i d e n t i f i e d i n the l i t e r a t u r e review as being r e l a t e d to nonadherence. By order of o c c u r r e n c e i n the Health I n t e r a c t i o n S t r a t e g y Model these v a r i a b l e s a r e as f o l l o w s : demographics, the H e a l t h B e l i e f s Model, the p a t i e n t ' s e x p l a n a t o r y model, and n a t u r e of the i l l n e s s ( P r e - I n t e r a c t i o n P h a s e ) ; s a t i s f a c t i o n w i t h p r a c t i t i o n e r a t t r i b u t e s , o v e r a l l s a t i s f a c t i o n , and s h a r e d r e s p o n s i b i l i t y ( I n t e r a c t i o n Phase); and problems with the home e x e r c i s e program, a t t i t u d e s of s i g n i f i c a n t o t h e r s , and use of unorthodox treatments ( P o s t - I n t e r a c t i o n Phase). As each of these v a r i a b l e s has been shown to be r e l a t e d to nonadherence i n p r e v i o u s s t u d i e s , i t was f e l t t h a t a l l should be g i v e n equal c o n s i d e r a t i o n as p o s s i b l e c o n t r i b u t o r y f a c t o r s to c h r o n i c nonadherence. They thus formed the b a s i s of a s t r u c t u r e d , e x p l o r a t o r y i n t e r v i e w which was conducted with two p o p u l a t i o n s of a r t h r i t i s p a t i e n t s ; a group of e i g h t p a t i e n t s d e f i n e d by the A r t h r i t i s S o c i e t y as b e i n g c h r o n i c nonadherents, and a comparison group of seven randomly chosen a r t h r i t i s p a t i e n t s 43 METHODOLOGY Subjects Two p o p u l a t i o n s were examined i n t h i s r e s e a r c h s t u d y . The f i r s t was a small group of people who were i d e n t i f i e d by t h e A r t h r i t i s S o c i e t y a s b e i n g c h r o n i c , t r e a t m e n t nonadherents. As d e f i n e d e a r l i e r , a c h r o n i c nonadherent i s someone who e x h i b i t s a complete l a c k of adherence to at l e a s t one a s p e c t o f h i s or her t h e r a p e u t i c regimen f o r extended p e r i o d s of time. The second p o p u l a t i o n which was used as a comparison group had s i m i l a r c h a r a c t e r i s t i c s as the f i r s t p o p u l a t i o n , except t h a t treatment adherence b e h a v i o u r s were not known. The c h r o n i c nonadherent p o p u l a t i o n was hand-picked by key A r t h r i t i s C e n t r e p e r s o n n e l a c c o r d i n g t o t h e f o l l o w i n g c r i t e r i a : male, l i v i n g i n Greater Vancouver, between the ages of 21 and 65, f l u e n t i n E n g l i s h , r e c e i v e d physiotherapy a t the A r t h r i t i s Centre w i t h i n the past year, given a home e x e r c i s e program by the p h y s i o t h e r a p i s t , and by s e l f - a d m i s s i o n a r e nonadherent to the home e x e r c i s e program. F i f t e e n p a t i e n t s were i d e n t i f i e d as meeting these c r i t e r i a . Of th e s e , f o u r c o u l d not be l o c a t e d , and the f i f t h was a p a t i e n t whom the' A r t h r i t i s S o c i e t y deemed i n e l i g i b l e because of a d d i t i o n a l medical c o m p l i c a t i o n s . The remaining ten p a t i e n t s agreed to p a r t i c i p a t e i n t h e s t u d y . U n f o r t u n a t e l y one o f t h e s e p a r t i c i p a n t s was d r o p p e d f r o m t h e s t u d y b e c a u s e he 44 c o n s i s t e n t l y f a i l e d t o meet w i t h the i n t e r v i e w e r , and the f i n d i n g s from a second p a r t i c i p a n t were e x c l u d e d from the r e s u l t s due to d i f f i c u l t i e s encountered by the respondent i n understanding and answering q u e s t i o n s . T h i s l e f t the c h r o n i c nonadherent group with e i g h t respondents. As p r e v i o u s l y i n d i c a t e d , a s s i g n m e n t t o t h e c h r o n i c nonadherent group was based on an assessment by the. A r t h r i t i s S o c i e t y . In order t o check the v a l i d i t y of t h i s assignment a l l r e s p o n d e n t s were a s k e d f o r a s e l f - r e p o r t o f t h e i r adherence behaviors. A comparison group of 10 p a t i e n t s was randomly chosen from the t o t a l p o p u l a t i o n of p a t i e n t s who are male, between the ages of 21 and 65, and l i v i n g i n the C i t y of Vancouver. As t h i s was the o n l y i n f o r m a t i o n a v a i l a b l e from A r t h r i t i s S o c i e t y r e c o r d s , an a d d i t i o n a l r e s e r v e sample p o o l o f 20 p a t i e n t s was drawn i n case o r i g i n a l sample members were not f l u e n t i n E n g l i s h , had not r e c e i v e d physiotherapy i n the past year, had not r e c e i v e d a home e x e r c i s e program, or c o u l d not be l o c a t e d . A f t e r i n t r o d u c t o r y telephone c a l l s were made by an A r t h r i t i s S o c i e t y s t a f f member, t e n p a t i e n t s were i d e n t i f i e d as meeting the aforementioned s e l e c t i o n c r i t e r i a . Of these, two p a t i e n t s refused to p a r t i c i p a t e and one p a t i e n t , a l t h o u g h a b l e t o speak some E n g l i s h , was not s u f f i c i e n t l y f l u e n t to p a r t i c i p a t e i n the r e s e a r c h study. T h i s l e f t the comparison group with seven respondents. 45 Procedures P o t e n t i a l r e s p o n d e n t s i n bot h the c h r o n i c nonadherent group, and the comparison group were o r i g i n a l l y c a l l e d by a s t a f f member at the A r t h r i t i s S o c i e t y i n order to n o t i f y these p a t i e n t s t h a t t h e y had been s e l e c t e d t o p a r t i c i p a t e i n a research study. I t was f e l t t h a t the i n i t i a l c a l l should come from the A r t h r i t i s S o c i e t y i n o r d e r t o m a i n t a i n p a t i e n t c o n f i d e n t i a l i t y , and to l e g i t i m i z e subsequent c o n t a c t s from someone who was not an employee of the A r t h r i t i s S o c i e t y . T h i s c o n t a c t was f o l l o w e d by i n t r o d u c t o r y l e t t e r s which were sent to p o t e n t i a l respondents e x p l a i n i n g the d e t a i l s of the r e s e a r c h study, and i n d i c a t i n g t h a t they would soon be r e c e i v i n g a second telephone c a l l . T h i s c a l l was made by the r e s e a r c h e r i n o r d e r t o answer any q u e s t i o n s p o t e n t i a l respondents might have had, and to ask f o r t h e i r p a r t i c i p a t i o n i n the study. Respondents who expressed i n t e r e s t i n the study then p a r t i c i p a t e d i n a 1V2 hour, in-home, taped i n t e r v i e w . As p a r t of t h i s study a smal l amount of i n f o r m a t i o n was a l s o . r e q u i r e d f r o m t h e t h e r a p i s t s i n t h e p h y s i o t h e r a p y department of the A r t h r i t i s S o c i e t y . In order to o b t a i n t h i s i n f o r m a t i o n , contact was f i r s t made with the department head. The purpose of the study was ex p l a i n e d to the manager of the department, and per m i s s i o n was then r e c e i v e d to d i s t r i b u t e a short q u e s t i o n n a i r e at the next physiotherapy s t a f f meeting. At t h i s meeting the t h e r a p i s t s were given a b r i e f e x p l a n a t i o n 46 of the study p r i o r to t h e i r completion of the q u e s t i o n n a i r e . A f t e r completion questions were answered, and a more in - d e p t h e x p l a n a t i o n of the study was p r o v i d e d . Measures The i n t e r v i e w schedule f o r t h i s study contained a mix of both q u a l i t a t i v e and q u a n t i t a t i v e q u e s t i o n s . The p r i m a r y r e a s o n f o r u s i n g the two m e t h o d o l o g i e s i s as G l a s e r and S t r a u s s (1967) s t a t e , t h a t r e s e a r c h i s e n r i c h e d when bot h t y p e s o f methodology a r e used i n u n i s o n . T o g e t h e r t h e y p r o v i d e d i f f e r e n t o u t l o o k s on the same d a t a , and thus a c t t o g e t h e r t h r o u g h a p r o c e s s o f s u p p l e m e n t a t i o n and mutual v e r i f i c a t i o n . Table 4 i n d i c a t e s the correspondence between study v a r i a b l e s and i n t e r v i e w schedule q u e s t i o n s . I n s e r t Table 4 about here The q u a n t i t a t i v e q u e s t i o n s used i n the i n t e r v i e w schedule are a combination of items from p r e - e x i s t i n g s c a l e s , and items which have been c o n s t r u c t e d s p e c i f i c a l l y f o r t h i s study. An attempt was made to f i n d r e l i a b l e , v a l i d s c a l e s , but t h i s was not a l w a y s p o s s i b l e due t o t h e s p e c i f i c n a t u r e o f t h e i n f o r m a t i o n which was r e q u i r e d . I n t e r v i e w items which were co n s t r u c t e d f o r the study f o l l o w as c l o s e l y as p o s s i b l e 47 Table 4 Correspondence Between Study V a r i a b l e s and Interview Schedule  Questions Independent V a r i a b l e s Relevant Questions Demographics Health B e l i e f s P e r c e i v e d S u s c e p t i b i l i t y P e r c e i v e d S e v e r i t y P e r c e i v e d B a r r i e r s P e r c e i v e d B e n e f i t s P a t i e n t ' s Explanatory Model Nature of the I l l n e s s S a t i s f a c t i o n with P r a c t i t i o n e r A t t r i b u t e s Communication ( 51) ( 52)(53 ) ( 5 4 ) ( 55)( 56)(57) (58) (2)(4) (6) (11)(15)(17) (8)*(9)(13)*(14)* (7) *(10)(12)(16) (18)(19)(20)(24)(25)(26)(27) (28)(30)(31) (1)(3)(21)(22)*(23) ( 8 0 ) ( 8 3 ) ( 8 6 ) * ( 8 7 ) * ( 9 2 ) ( 9 3 ) * (95) * ( t a b l e c ontinues) 48 Independent V a r i a b l e s Relevant Questions A f f e c t i v e Care T e c h n i c a l Competence Shared R e s p o n s i b i l i t y O v e r a l l S a t i s f a c t i o n A t t i t u d e s of S i g n i f i c a n t Others Use of Unorthodox Treatments Problems with the Home Ex e r c i s e Program (7 9 ) * ( 8 1 ) ( 8 2 ) * ( 8 4 ) ( 8 5 ) ( 8 8 ) * (91)*(94)(96)* (89)(90)(97)* (59) (78) ( 29) (32) (98) (99_)*(100) (101)* (102)*(103)(104) (46)(47)(48) (49)*(50) ( 3 3 ) * ( 3 4 ) * ( 3 5 ) * ( 3 6 ) * ( 3 7 ) * (38)*(39)* Dependent V a r i a b l e Adherence (40)(41)(42)(43)(44)(45) * denotes q u e s t i o n s which were reversed i n s c o r i n g 49 v a r i a b l e d e f i n i t i o n s as p r o v i d e d by t h e o r i s t s i n the f i e l d i n order to enhance content v a l i d i t y . The complete i n t e r v i e w schedule can be found i n Appendix A. Adherence A d h e r e n c e b e h a v i o u r s of both the c h r o n i c nonadherent group and the comparison group were measured i n t h i s study. The f o r m e r measurements were taken i n o r d e r to check t h e v a l i d i t y o f the assignments made by the A r t h r i t i s S o c i e t y . The l a t t e r measurements were taken as adherence behaviours of the comparison group were not p r e v i o u s l y known. In o r d e r t o measure a d h e r e n c e b e h a v i o u r s , a s c a l e developed i n a study c a r r i e d out by Carpenter and Davis (1976) was u t i l i z e d . Studying rheumatoid a r t h r i t i s p a t i e n t s who had j u s t been r e l e a s e d from h o s p i t a l , they used the s c a l e t o determine adherence to an e x e r c i s e regime p r e s c r i b e d at the time of d i s c h a r g e . C a r p e n t e r and D a v i s d e f i n e d adherence a c c o r d i n g t o how w e l l p a t i e n t s a d h e r e d t o b o t h e x e r c i s e frequency and format. No f i g u r e s i n d i c a t i n g r e l i a b i l i t y and v a l i d i t y are g i v e n by the authors, although they s t a t e that the v a l i d i t y of the a d h e r e n c e measure was t e s t e d by c r o s s - c h e c k i n g the s c a l e r e s u l t s w i t h i n f o r m a t i o n obtained from three other s o u r c e s . However, no i n d i c a t i o n i s given by the authors as to how w e l l the adherence s c a l e performed i n r e l a t i o n to these a d d i t i o n a l measures. 50 T h i s p a r t i c u l a r measure was c h o s e n f o r a number o f reasons. F i r s t of a l l , i t has been p r e v i o u s l y used to measure the same t y p e of b e h a v i o u r (adherence to a home e x e r c i s e program), and with the same p o p u l a t i o n ( a r t h r i t i s p a t i e n t s ) as the c u r r e n t study. Secondly, the s c a l e i s short and e a s i l y u n d e r s t o o d . L a s t l y , the s c a l e a ppears t o have good f a c e v a l i d i t y i n that q u a n t i t y and q u a l i t y of e x e r c i s e seem to be the two c r i t e r i a which d e f i n e proper e x e r c i s e adherence. The o n l y changes which were made to t h i s s c a l e i n v o l v e d the a d d i t i o n and d e l e t i o n of s i n g l e q u e s t i o n s , and a s l i g h t re-wording of e x i s t i n g q u e s t i o n s . The added q u e s t i o n asks the respondent to i n d i c a t e the frequency with which they were t o l d t o do t h e i r e x e r c i s e s . T h i s q u e s t i o n has been added as p a t i e n t f i l e s do not u s u a l l y i n c l u d e t h i s type of i n f o r m a t i o n . As n o t e d by many a u t h o r s , a d h e r e n c e i s a d i f f i c u l t v a r i a b l e t o m e a s u r e ( G o r d i s , 19 7 6; H i l b e r t , 1 9 8 5 ) . Measurement of outcome c r i t e r i a i s not u s u a l l y p o s s i b l e because p a t i e n t s respond i n d i f f e r e n t ways to treatment. As i t i s a l s o not p o s s i b l e to watch p a t i e n t s complete t h e i r e x e r c i s e s , r e s e a r c h e r s are o f t e n f o r c e d to r e l y on s e l f - r e p o r t measures. The problem w i t h t h i s type of measure i s t h a t a d h e r e n c e i s a s o c i a l l y d e s i r a b l e b e h a v i o u r , and t h u s , respondents w i l l tend to underestimate nonadherence behaviour (Gordis, 1976). Because p o s i t i v e s e l f - p r e s e n t a t i o n ( s o c i a l d e s i r a b i l i t y ) o c c u r s when a p e r s o n f e e l s t h r e a t e n e d , a c o u n t e r a c t i v e 51 s t r a t e g y i s t o make q u e s t i o n s seem l e s s t h r e a t e n i n g ( B a i l e y , 1982). T h i s can be done by wording the q u e s t i o n i n such a way that an assumption i s made that a m a j o r i t y of people a l r e a d y engage i n the behaviour. For example, p r i o r to the q u e s t i o n s on adherence, a statement was i n c l u d e d which read as f o l l o w s : ' f o l l o w i n g the recommendations of one's p h y s i o t h e r a p i s t i s not always easy, and thus many p e o p l e f i n d i t d i f f i c u l t t o do t h e i r home e x e r c i s e s e x a c t l y as they were t a u g h t ' . T h i s statement attempted to g i v e people p e r m i s s i o n to admit t h a t they may have not been t o t a l l y adherent, i f t h i s was indeed the case. A f u r t h e r d i f f i c u l t y i n d i s t i n g u i s h i n g between adherent and nonadherent behaviour i s that p a t i e n t s are o f t e n t o l d to a l t e r t h e i r e x e r c i s e regime i f e x c e s s i v e p a i n i s experienced. Thus, i t i s d i f f i c u l t t o determine whether a respondent who has made m o d i f i c a t i o n s to h i s or her e x e r c i s e program i s s t i l l a dherent. In order to a s c e r t a i n whether respondents who had made minor a l t e r a t i o n s t o t h e i r e x e r c i s e program s h o u l d be c l a s s i f i e d as adherent or nonadherent, h e l p was e n l i s t e d from the p h y s i o t h e r a p y d e p a r t m e n t . Working as a group, t h r e e p h y s i o t h e r a p i s t s were gi v e n the f o l l o w i n g p a t i e n t i n f o r m a t i o n : d i a g n o s i s , type of home e x e r c i s e s given, frequency of e x e r c i s e c o m p l e t i o n , and q u a l i t a t i v e changes made to the e x e r c i s e program. Using t h i s i n f o r m a t i o n the p h y s i o t h e r a p i s t s were then asked to d i s c u s s the case and come up with a consensus as to whether respondents were e x h i b i t i n g adherent or nonadherent 52 b e h a v i o u r s . Based on t h i s d e c i s i o n , p a t i e n t s were t h e n c a t e g o r i z e d as being adherent or nonadherent. Demographics T h i s study asked respondents f o r i n f o r m a t i o n r e g a r d i n g t h e i r age, l i v i n g s i t u a t i o n , m a r i t a l s t a t u s , e t h n i c o r i g i n , l e v e l of e d u c a t i o n , income, and employment s t a t u s . The H e a l t h B e l i e f s Model The H e a l t h B e l i e f s Model i s a v a r i a b l e which has been measured using a s c a l e developed by Given, Given, G a l l i n and Condon ( 1 9 8 3 ) . A l t h o u g h d e s i g n e d t o measure t h e h e a l t h b e l i e f s of d i a b e t i c p a t i e n t s , t h e s c a l e has been e a s i l y a d a p t e d t o make i t p e r t i n e n t f o r use w i t h an a r t h r i t i s p o p u l a t i o n . The s c a l e was s e l e c t e d f o r t h i s study because i t a d d r e s s e s some of the c r i t i c i s m s which have been d i r e c t e d towards e a r l i e r measures. For example, previous s c a l e s have been c r i t i c i z e d f o r u s i n g o n l y one or two items to measure e a c h c o n c e p t (Champion, 1 9 8 4 ) . The G i v e n e t a l . (1983) q u e s t i o n n a i r e uses numerous items f o r each of the s u b s c a l e s of p e r c e i v e d s e v e r i t y , p e r c e i v e d b a r r i e r s , and p e r c e i v e d b e n e f i t s . A second c r i t i c i s m mentioned by Champion (1984) i s t h a t p r e v i o u s l y c o n c e p t s were o p e r a t i o n a l i z e d at a nominal l e v e l , t h e r e b y l i m i t i n g a n a l y s i s t o the use of e l e m e n t a r y s t a t i s t i c s . The G i v e n et a l . (1983) s c a l e a d d r e s s e s t h i s i s s u e by u s i n g a l a r g e number of q u e s t i o n s , and by s c o r i n g items on a 5-point L i k e r t s c a l e . T h i s a l l o w s f o r a n a l y s i s a p p r o p r i a t e to i n t e r v a l l e v e l data. One c r i t i c i s m mentioned by Champion (1984) which the Given et a l . (1983) s c a l e does not meet i s t h a t l i k e e a r l i e r H e a l t h B e l i e f s c a l e s , i t has not been w e l l - t e s t e d f o r v a l i d i t y or r e l i a b i l i t y . However, to the authors' c r e d i t , they do d i s c u s s attempts to improve c o n s t r u c t v a l i d i t y through the use of a three stage process to develop the q u e s t i o n n a i r e . These stages i n c l u d e d : (1) a review and a d a p t a t i o n of p r e v i o u s i n s t r u m e n t s , (2) a review of p a t i e n t e d u c a t i o n m a t e r i a l s , and (3) i n - d e p t h i n t e r v i e w s w i t h 25 d i a b e t i c p a t i e n t s . Changes which were made to t h i s q u e s t i o n n a i r e i n adapting i t to the c h r o n i c nonadherence study i n c l u d e d the d e l e t i o n of a number of qu e s t i o n s i n order to pare the sub s c a l e s down to f o u r items each. T h i s was done f o r the sake of b r e v i t y . Items which were kept were s e l e c t e d on the b a s i s of high item-c l u s t e r c o r r e l a t i o n . These items were then reworded s l i g h t l y to make them a p p l i c a b l e to an a r t h r i t i s p o p u l a t i o n . L a s t l y , two items were added i n order t o measure a f o u r t h c o n c e p t , p e r c e i v e d s u s c e p t i b i l i t y . Q u e s t i o n s r e l a t i n g t o s u s c e p t i b i l i t y are not u s u a l l y asked of p a t i e n t s with an acute or c h r o n i c i l l n e s s as the p r e s e n c e of symptoms makes t h i s q u e s t i o n redundant. However, as c e r t a i n types o f a r t h r i t i s may o c c a s i o n a l l y go i n t o r e m i s s i o n , i t was f e l t t h a t q u e r y i n g these p a t i e n t s regarding s u s c e p t i b i l i t y would be a p p r o p r i a t e . A sample of a c o u p l e o f the items r e l a t e d t o the H e a l t h 54 B e l i e f s Model i n c l u d e s ; 'In g e n e r a l , the home e x e r c i s e s have helped my a r t h r i t i s ' , and 'I worry when I think about how bad my a r t h r i t i s may get i n the f u t u r e ' . Patient's Explanatory Model T h i s v a r i a b l e was measured using a number of q u a l i t a t i v e questions developed by Kleinman (1980) to a i d re s e a r c h e r s and h e a l t h c a r e p r a c t i t i o n e r s i n e l i c i t i n g p a t i e n t ' s e x p l a n a t o r y models. A l t h o u g h e i g h t q u e s t i o n s were d e v e l o p e d f o r t h i s p urpose, o n l y f o u r of t h e s e were used i n t h i s study. Two questions were not i n c l u d e d because they were asked elsewhere i n the i n t e r v i e w , and the l a s t two q u e s t i o n s were e l i m i n a t e d because t h e y were f e l t t o be e x t r a n e o u s t o the s u b j e c t o f nonadherence. Two q u e s t i o n s were added t o f i n d out whether p a t i e n t s had e x p e c t a t i o n s of the A r t h r i t i s S o c i e t y being a b l e to c o n t r o l and/or cure t h e i r d i s e a s e . Two of the q u e s t i o n s which were i n c l u d e d i n the i n t e r v i e w are as f o l l o w s ; 'what do you think has caused your a r t h r i t i s ? ' , and 'why do you t h i n k that was the cause?' Nature of the I l l n e s s As no s t a n d a r d i z e d q u e s t i o n s were found to measure t h i s v a r i a b l e a l l q u e s t i o n s were developed by the author. Elements of t h i s v a r i a b l e which were f e l t to be important based on a review of the l i t e r a t u r e i n c l u d e d c u r r e n t d i s e a s e a c t i v i t y , c u r r e n t s e v e r i t y o f t h e i l l n e s s , p e r c e i v e d i m p a c t , and 55 p e r c e i v e d , f u t u r e d u r a t i o n o f the d i s e a s e . Each o f t h e s e elements was measured with a s i n g l e q u e s t i o n . As an example, r e s p o n d e n t s were asked the f o l l o w i n g q u e s t i o n , 'up t o t h i s p o i n t i n time how much of an impact has your a r t h r i t i s had on your l i f e ? ' . S a t i s f a c t i o n with P r a c t i t i o n e r A t t r i b u t e s The respondent's s a t i s f a c t i o n w i t h t h e i r p r a c t i t i o n e r ' s communication, a f f e c t i v e c a r e and t e c h n i c a l competence was measured using a s c a l e which was adapted by DiMatteo and Hays (1980) from two e a r l i e r measures. The s c a l e was used by these two r e s e a r c h e r s to a s s e s s p a t i e n t s ' s a t i s f a c t i o n w i t h t h e i r f a m i l y p h y s i c i a n s . In c o n d u c t i n g t h i s study on a sample of 329 p a t i e n t s , the rese a r c h e r s found that i n t e r n a l c o n s i s t e n c y tended to be higher than t e s t - r e t e s t r e l i a b i l i t y . The exact f i g u r e s being as f o l l o w s : Cronbach's alpha = .92 (n=287), and t e s t - r e t e s t r e l i a b i l i t y = .63 (n=22). The adapted s c a l e of DiMatteo and Hays (1980) was used i n t h i s study because of i t s q u a l i t i e s of b r e v i t y , being e a s i l y u nderstood, and having h i g h i n t e r n a l c o n s i s t e n c y . The o n l y changes which were made to the s c a l e i n v o l v e d dropping a f i v e i t e m s u b s c a l e m e a s u r i n g g e n e r a l s a t i s f a c t i o n , and t h e rewording of qu e s t i o n s i n order to change the o r i e n t a t i o n of the q u e s t i o n s from p h y s i c i a n s to p h y s i o t h e r a p i s t s . Two sample items from t h i s s c a l e are, 'the p h y s i o t h e r a p i s t always seemed to know what she was doing', and 'the p h y s i o t h e r a p i s t gave me 56 suggestions on what I c o u l d do to manage my a r t h r i t i s b e t t e r ' . Shared Responsibility S h a r e d r e s p o n s i b i l i t y i s a v a r i a b l e w h i c h has been measured u s i n g a 20-item s c a l e developed by G l e a s o n , Karuza and Zevon (1981). T h i s s c a l e has been p r e v i o u s l y used to measure whether p r a c t i t i o n e r ' s c h o i c e of h e l p i n g model i s r e l a t e d t o t h e age o f t h e t a r g e t p o p u l a t i o n . A l t h o u g h i n f o r m a t i o n on v a l i d i t y i s n o t a v a i l a b l e , t h e i n t e r n a l c o n s i s t e n c y of the s c a l e i s s a i d to range anywhere from .6 to .8, depending on which of the h e l p i n g models i s being measured ( J . Karuza J r . , p e r s o n a l communication, May 20, 1988). Overall Satisfaction S a t i s f a c t i o n i s a v a r i a b l e which has been measured u s i n g an e i g h t i t e m c l i e n t s a t i s f a c t i o n q u e s t i o n n a i r e (CSQ-8) developed by Larsen, A t t k i s s o n , Hargreaves and Nguyen (1979). T h i s q u e s t i o n n a i r e was s e l e c t e d f o r the c h r o n i c nonadherence study because of a number of advantages i t holds over other measures. F i r s t of a l l , the s c a l e has been used i n a number of d i f f e r e n t s e t t i n g s t h a t s e r v i c e d i f f e r e n t c l i e n t t y p e s (Pascoe & A t t k i s s o n , 1983). Secondly, the q u e s t i o n n a i r e has been f o u n d t o have r e p e a t e d l y h i g h v a l u e s o f i n t e r n a l c o n s i s t e n c y . A t t k i s s o n and Zwick (1982) i n d i c a t e t h a t p r e v i o u s s t u d i e s have found i n t e r n a l c o n s i s t e n c y v a l u e s of .93, .92, and .87. T h i r d l y , A t t k i s s o n and Zwick (1982) have 57 shown t h a t the CSQ-8 a l s o has a h i g h degree of s p l i t - h a l f r e l i a b i l i t y . The f o u r t h b e n e f i t i s t h a t c o n s t r u c t v a l i d i t y has been enhanced through a process of l i t e r a t u r e review and c r i t i q u i n g by a v a r i e t y o f h e a l t h p r o f e s s i o n a l s and a d m i n i s t r a t o r s (Nguyen, A t t k i s s o n & Stegner, 1983). L a s t l y , t h i s s c a l e has been shown to be s i g n i f i c a n t l y c o r r e l a t e d with s e r v i c e u t i l i z a t i o n ( A t t k i s s o n & Zwick, 1982). One of the problems with t h i s , or any s a t i s f a c t i o n s c a l e , i s t h a t s t u d i e s u s i n g t h e s e s c a l e s r e p e a t e d l y show u n r e a s o n a b l y h i g h l e v e l s o f c l i e n t s a t i s f a c t i o n . In an attempt to l i m i t the a f f e c t s of s o c i a l d e s i r a b i l i t y , i t was found that respondents reported a lower l e v e l of s a t i s f a c t i o n when answering que s t i o n s using a w r i t t e n mode versus an o r a l i n t e r v i e w s t y l e . C o n v e r s e l y , the o r a l a d m i n i s t r a t i o n mode r e s u l t e d i n a s i g n i f i c a n t l y l o w e r number o f unanswered quest i o n s as compared to the w r i t t e n mode (Nguyen, A t t k i s s o n & S t e g n e r , 1 9 8 3 ) . T h u s , t h e r e a r e b o t h a d v a n t a g e s and disadvantages to using an i n t e r v i e w - s t y l e format. In adapting t h i s s c a l e to the c h r o n i c nonadherence study the o n l y change made was to d e l e t e one q u e s t i o n . T h i s was done i n o r d e r t o make t h e s a t i s f a c t i o n q u e s t i o n n a i r e e q u i v a l e n t to the q u e s t i o n n a i r e used i n an e a r l i e r A r t h r i t i s S o c i e t y s t u d y . T h i s w i l l a l l o w comparison of s a t i s f a c t i o n l e v e l s between both of these s t u d i e s . One of the q u e s t i o n s which was used to tap t h i s v a r i a b l e was ' i f a f r i e n d were i n need of s i m i l a r help, would you recommend your p h y s i o t h e r a p i s t 58 to him or her?'. A t t i t u d e s of S i g n i f i c a n t Others T h i s v a r i a b l e was measured with three q u e s t i o n s , two of which were q u a n t i t a t i v e and one which was q u a l i t a t i v e . These were developed by the author to determine how the a d v i c e or a t t i t u d e s o f s i g n i f i c a n t o t h e r s m i g h t a f f e c t a d h e r e n c e behaviours. For example, respondents were asked the f o l l o w i n g q u e s t i o n , 'what were the r e a c t i o n s of f a m i l y members to the t r e a t m e n t s recommended by t h e p h y s i o t h e r a p i s t ? ' . No i n f o r m a t i o n r e g a r d i n g v a l i d i t y and r e l i a b i l i t y i s known f o r t h i s v a r i a b l e . Use of A l t e r n a t i v e Treatments The use of unorthodox t h e r a p i e s was measured w i t h one q u a l i t a t i v e q u e s t i o n , and a s i n g l e q u a n t i t a t i v e q u e s t i o n . These que s t i o n s sought to determine the numbers and types of a l t e r n a t i v e t r e a t m e n t s which have been p r e v i o u s l y used by respondents. I t was f e l t by the a u t h o r t h a t r e s p o n d e n t s might be a f r a i d of a d m i t t i n g the use of treatments which are frowned upon by the A r t h r i t i s S o c i e t y . In order to c o u n t e r a c t t h i s e f f e c t , a technique was used which i m p l i e s that the respondent engages i n s o c i a l l y u n d e s i r a b l e b e h a v i o u r and l e a v e s t h e r e s p o n s i b i l i t y up t o t h e p a r t i c i p a n t t o deny t h a t t h e behaviour i s present ( B a i l e y , 1982). For example, i n s t e a d of 59 asking- if_ respondents had t r i e d unorthodox treatments, they were asked how many a l t e r n a t i v e treatments they had t r i e d , w i t h one of the a v a i l a b l e responses being 'none'. With the f i r s t form of the q u e s t i o n , i t i s much e a s i e r f o r respondents to deny the behaviour, even i f they have engaged i n i t at some prev i o u s p o i n t i n time. Problems w i th the Home E x e r c i s e Program With t h i s v a r i a b l e p a t i e n t s were asked to respond to s i x commonly c i t e d problems a s s o c i a t e d with home e x e r c i s e programs i n order to determine the s a l i e n c e of each of these problems. As an example, r e s p o n d e n t s were a s k e d t o r e s p o n d t o t h e f o l l o w i n g s t a t e m e n t , ' t r e a t m e n t made me f e e l w o r s e a f t e r w a r d s ' . A s e v e n t h q u e s t i o n was added i n o r d e r t o d i s c o v e r whether respondents had any problems with t h e i r home e x e r c i s e program i n a d d i t i o n t o the ones which had been p r e v i o u s l y mentioned. As t h e s e q u e s t i o n s were d e v e l o p e d by the a u t h o r , no i n f o r m a t i o n i s a v a i l a b l e r egarding v a l i d i t y or r e l i a b i l i t y . Enhancement o f Q u e s t i o n n a i r e V a l i d i t y and R e l i a b i l i t y In order to improve v a l i d i t y f o r the whole q u e s t i o n n a i r e , data were gathered using an i n t e r v i e w format. B a i l e y (1982) s u g g e s t s t h a t an i n t e r v i e w format a l l o w s f o r a c c e s s t o the r e s p o n d e n t s n o n - v e r b a l b e h a v i o u r , as w e l l as i n c r e a s i n g respondent s p o n t a n e i t y . Access to non-verbal behaviour allows 60 the I n t e r v i e w e r to e s t i m a t e how t r u t h f u l the respondent i s being. The advantage of s p o n t a n e i t y r e f e r s t o the f a c t t h at i n answering q u e s t i o n s , respondents are more l i k e l y to s t a t e the f i r s t t h o u g h t s which come t o mind. B a i l e y f e e l s t h a t these f i r s t thoughts are more l i k e l y to be i n f o r m a t i v e r a t h e r than normative. Or i n other words, the f i r s t thoughts a r e more l i k e l y t o r e f l e c t what the respondent r e a l l y b e l i e v e s , as compared to what the respondent t h i n k s the i n t e r v i e w e r wants to hear. One f e a r which r e s p o n d e n t s may have had i s t h a t word would get back to the A r t h r i t i s S o c i e t y i f they admitted to being nonadherent, d i s s a t i s f i e d , or otherwise engaged i n some form of s o c i a l l y u n d e s i r a b l e b e h a v i o u r . In an attempt to assuage t h i s f e a r , i t was s t r e s s e d a t the b e g i n n i n g of the i n t e r v i e w t h a t a l l i n t e r v i e w i n f o r m a t i o n was to be k e p t s t r i c t l y c o n f i d e n t i a l . M i l l e r (1986) s t a t e s , " i f a measure i s v a l i d ( a s s e s s e s what i t i s supposed to) i t must a l s o be r e l i a b l e ( r e l a t i v e l y f r e e o f random e r r o r ) " ( p . 5 9 ) . Thus, the a f o r e m e n t i o n e d techniques to improve v a l i d i t y should a l s o have had a p o s i t i v e e f f e c t on t h e r e l i a b i l i t y o f the i n t e r v i e w s c h e d u l e . In a d d i t i o n , one t e c h n i q u e was used s p e c i f i c a l l y t o improve r e l i a b i l i t y . For the closed-ended q u e s t i o n s , cards l i s t i n g a v a i l a b l e responses were gi v e n to the respondents from which they c o u l d then choose t h e i r answer. By u s i n g c a r d s a l l responses had an equal chance of being chosen; whereas, i f the 61 answers were read aloud to the respondent, the f i r s t and l a s t answers may have had a d i s p r o p o r t i o n a t e chance of being chosen due to the primacy or recency e f f e c t . Data Analysis One o f the d i f f i c u l t i e s a s s o c i a t e d w i t h q u a l i t a t i v e r e s e a r c h i s t h a t the methodology i s not s t a n d a r d i z e d . In o t h e r words, a n a l y s i s t e c h n i q u e s a r e o f t e n a p p l i e d i n a v a r i e t y o f ways by d i f f e r e n t s o c i a l s c i e n t i s t s . Thus, i n order f o r r e p l i c a t i o n t o occur i t i s not only important f o r f u t u r e researchers to know the q u e s t i o n s which were asked, but a l s o the means by which the data was analyzed. In t h i s study the q u a l i t a t i v e data have been p r i m a r i l y used as a supplement to the q u a n t i t a t i v e data a n a l y s i s . T h i s was c a r r i e d out by coding the i n t e r v i e w t r a n s c r i p t s a c c o r d i n g to the v a r i o u s independent v a r i a b l e s used i n t h i s study. For example, i f any mention was made with respect to how as p e c t s of the p a t i e n t ' s i l l n e s s a f f e c t e d adherence a n o t a t i o n was made. S i m i l a r l y , n o t a t i o n s were made i n the i n t e r v i e w t r a n s c r i p t s i f respondents made r e f e r e n c e to any of the other v a r i a b l e s being considered i n t h i s study. Quotations from the tape t r a n s c r i p t s were then compiled c a t e g o r i c a l l y by v a r i a b l e . These q u o t a t i o n s were then used to e i t h e r v e r i f y or d i s p u t e the r e s u l t s of the q u a n t i t a t i v e d a t a a n a l y s i s . A sample i n t e r v i e w t r a n s c r i p t , p r i o r t o a n a l y s i s , can be found i n Appendix 2. 62 The q u a n t i t a t i v e d a t a f i r s t underwent a p r o c e s s o f u n i v a r i a t e a n a l y s i s whereby t h e f r e q u e n c i e s , measures o f c e n t r a l tendency, and measures of d i s p e r s i o n were determined f o r each v a r i a b l e . As the s t u d y was s e t up t o a s c e r t a i n f a c t o r s a s s o c i a t e d with c h r o n i c nonadherence, t - t e s t a n a l y s i s was c a r r i e d out i n order t o observe whether any d i f f e r e n c e s were e v i d e n t i n t h e c h r o n i c n o n a d h e r e n t g r o u p and t h e c o m p a r i s o n g r o u p . F o r v a r i a b l e s w h i c h d i d not p r o d u c e i n t e r v a l l e v e l data, median t e s t s were c a r r i e d out. In measuring the a c t u a l adherence b e h a v i o u r s of group members i t was f o u n d t h a t some members o f t h e c h r o n i c nonadherent group were, i n f a c t , adherent, and some members of the comparison group were c h r o n i c a l l y nonadherent. Because of t h i s f i n d i n g , a second s e t of t - t e s t s and median t e s t s were c o n d u c t e d . F o r t h i s s e c o n d a n a l y s i s r e s p o n d e n t s were r e a r r a n g e d i n t o g r o u p s a c c o r d i n g t o a c t u a l a d h e r e n c e b e h a v i o u r s . I t was f e l t t h a t t h i s second s e t of a n a l y s e s would provide a more accurate i n d i c a t i o n of the f a c t o r s a s s o c i a t e d with adherence. 63 RESULTS When the study was o r i g i n a l l y set up f the i n t e n t i o n was to compare data between the c h r o n i c nonadherent group and the comparison group i n order to determine the f a c t o r s a s s o c i a t e d w i t h c h r o n i c n o n a d h e r e n c e . Once t h e d a t a began t o be a n a l y z e d , however, i t was d i s c o v e r e d t h a t two of the e i g h t respondents i n the c h r o n i c nonadherent group were adherent t o t h e i r home e x e r c i s e programs. S i m i l a r l y , two of the seven r e s p o n d e n t s i n t h e c o m p a r i s o n g r o u p were f o u n d t o be nonadherent. Although t h i s o n l y r e p r e s e n t s a 25% e r r o r , i t was f e l t t h a t a second set of analyses should be c a r r i e d out between those respondents who reported adherence to t h e i r home e x e r c i s e program, and those who d i d not, r e g a r d l e s s of the o r i g i n a l A r t h r i t i s S o c i e t y c a t e g o r i z a t i o n . I t i s t h i s second a n a l y s i s which i s of primary importance because i t p o i n t s t o those f a c t o r s that are a c t u a l l y r e l a t e d to p a t i e n t adherence behaviours. Thus, i t i s t h i s a n a l y s i s which w i l l be d i s c u s s e d on the f o l l o w i n g pages. The f i r s t a n a l y s i s which compares the data between the chronic nonadherent group as d e f i n e d by the A r t h r i t i s S o c i e t y , and the randomly chosen comparison group can be found i n Appendix 3. A d i s c u s s i o n which looks at dev i a n t behaviour and the e f f e c t s of l a b e l l i n g has been appended to t h i s a n a l y s i s . Before p r e s e n t i n g the r e s u l t s i t i s important to note the l i m i t s of the d e s i g n i n i t s a b i l i t y to d e t e c t s t a t i s t i c a l l y 64 s i g n i f i c a n t f i n d i n g s . T h i s can be a t t r i b u t e d to the f a c t t h at data a n a l y s i s was c a r r i e d out on a very s m a l l sample (N = 15). T h u s , t h e a n a l y s i s was p r o n e t o "Type Two E r r o r " ; t h e p o s s i b i l i t y o f r e j e c t i n g a f i n d i n g which i s , i n f a c t , t r u e . However, a l t h o u g h 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 i n d i n g s a r e l a c k i n g , the s t u d y d i d p o i n t to some i n t e r e s t i n g f i n d i n g s which i d e a l l y s h o u l d be a n a l y z e d w i t h a l a r g e r sample. In e x a m i n i n g t h e mean d i f f e r e n c e s between the two g r o u p s a s i g n i f i c a n c e l e v e l of .10 was chosen due to the e x p l o r a t o r y nature of the study ( B l a l o c k , 1972). A n a l y s i s Using S e l f - R e p o r t e d Measures of Adherence Demographics Many of the demographic c h a r a c t e r i s t i c s of the adherent and nonadherent group were shown to be s i m i l a r . For example, b o t h g r o u p s were w e l l - m a t c h e d w i t h r e s p e c t t o l i v i n g s i t u a t i o n , and e d u c a t i o n a l l e v e l . F a c t o r s which showed minor d i f f e r e n c e s i n c l u d e d age and m a r i t a l s t a t u s . With regard to age, n o n a d h e r e n t s t e n d e d t o be s l i g h t l y o l d e r t han t h e adherents. Thus, 62.5% of the nonadherents are 46 years of age or o l d e r , w h i l e o n l y 42.9% of the adherents are i n t h i s same category (see Table 5). With respect to m a r i t a l s t a t u s , a lower p e r c e n t a g e of nonadherents a r e m a r r i e d (37.5%) as compared to the p a t i e n t s who are adherents (57.1%). 65 I n s e r t Table 5 about here As i n d i c a t e d i n T a b l e 5, f a c t o r s t h a t do show c o n s i d e r a b l e d i f f e r e n c e s are income and employment s t a t u s . Nonadherents tended t o be both low income earners and unemployed. The H e a l t h B e l i e f s Model Four v a r i a b l e s are subsumed under the heading of h e a l t h b e l i e f s . These v a r i a b l e s are p e r c e i v e d s e v e r i t y , p e r c e i v e d s u s c e p t i b i l i t y , p e r c e i v e d b a r r i e r s , and p e r c e i v e d b e n e f i t s . Although each of these has been analyzed s e p a r a t e l y , they can be c o n s i d e r e d as v a r i o u s d i m e n s i o n s of a s i n g l e u n i t , the i n d i v i d u a l ' s h e a l t h b e l i e f s model. As mentioned e a r l i e r , p e r c e i v e d s u s c e p t i b i l i t y q u e s t i o n s are not u s u a l l y asked of p a t i e n t s w i t h a c t i v e s y m p t o m a t o l o g y as t h e p r e s e n c e o f symptoms makes the q u e s t i o n redundant. Of t h e s e v a r i a b l e s , one which showed a s i g n i f i c a n t d i f f e r e n c e i n the s c o r e s of nonadherents and ad h e r e n t s was p e r c e i v e d s e v e r i t y (see Table 6 ). In s e r t Table 6 about here In t h i s i n s t a n c e t h e c r o s s - t a b u l a t i o n i n d i c a t e s t h a t adherents tended to have a stronger b e l i e f i n the f u t u r e Table 5 C r o s s - T a b u l a t i o n s : P a t i e n t Demographic C h a r a c t e r i s t i c s by Adherence Demographic Nonadherents Adherents C h a r a c t e r i s t i c s No. % No. % n = 8 n = 7 Age (Median = 46) Under 46 years 3 46 years and over 5 L i v i n g S i t u a t i o n Alone 3 Other 5 M a r i t a l S tatus Married 3 Other 5 Education High School or l e s s 3 Post-High School 5 37.5 4 57.1 62.5 3 42.9 37.5 3 42.9 62.5 4 57.1 37.5 4 57.1 62.5 3 42.9 37.5 3 42.9 62.5 4 57.1 ( t a b l e c o n t i n u e s ) 67 Demographic Nonadherents Adherents C h a r a c t e r i s t i c s No. % No. % n = 8 n = 7 Income under 20,000 6 85.7 3 42.9 20,000 and above 1 14.3 4 57.1 Employment Employed Other 2 25.0 6 75.0 5 71.4 2 28.6 68 Table 6 T-Test A n a l y s i s of the Health B e l i e f s Model with Adherence Perceived S e v e r i t y Mean* SD t 2 - T a i l Prob nonadherents 12.3 3.0 -1.36 0.197 adherents 9.9 3.0 * Means were obtained by f i r s t summing the scores on the fo u r items r e l a t e d t o p e r c e i v e d s e v e r i t y . The mean thus r e p r e s e n t s the average t o t a l score of each respondent i n each group 69 s e v e r i t y of t h e i r d i s e a s e than d i d nonadherents (see Table 7 ) . I n s e r t Table 7 about here P a t i e n t ' s Explanatory Model The Explanatory Model looks at the reasons people use to e x p l a i n t h e i r i l l n e s s . A n a l y s i s of the q u a l i t a t i v e data showed that a m a j o r i t y of people f e l t that t h e i r d i s e a s e was the r e s u l t of a two-stage p r o c e s s . The f i r s t stage i n v o l v e s the e x i s t e n c e of some type of f a c t o r which p r e d i s p o s e s them to g e t t i n g a r t h r i t i s . Often mentioned f a c t o r s i n t h i s l i g h t were h e r e d i t y ( 5 0 % ) , p r e v i o u s i n j u r i e s ( 1 9 % ) , and e a r l y l i f e e x p e r i e n c e s ( 3 1 % ) . Both h e r e d i t y and p r e v i o u s i n j u r y a r e s t a n d a r d e x p l a n a t i o n s espoused by the A r t h r i t i s S o c i e t y as l i k e l y causes of rheumatic d i s e a s e . As i s e v i d e n t , a l a r g e p e r c e n t a g e of p a t i e n t s i n t h i s study had a b e l i e f i n these s t a n d a r d e x p l a n a t i o n s . A s m a l l e r p e r c e n t a g e of p a t i e n t s b e l i e v e d i n a combination of one of the standard e x p l a n a t i o n s and e a r l y l i f e e xperiences. These p a t i e n t s h e l d to the n o t i o n that events i n t h e i r e a r l y l i f e somehow weakened them, thus making them more s u s c e p t i b l e to the a r t h r i t i s . Some examples of the e a r l y e x p e r i e n c e s r e f e r r e d to by respondents i n c l u d e p r e v i o u s d i s e a s e s , poor food h a b i t s , improper c l o t h i n g as a c h i l d , and f o r another i n d i v i d u a l improper c l o t h i n g as an 70 Table 7 C r o s s - T a b u l a t i o n s ; The Health B e l i e f s Model by Adherence Health B e l i e f s Nonadherents Adherents No. % No. % n = 8 n = 7 P e r c e i v e d S e v e r i t y High 4 50.0 6 85.7 Low 4 50.0 1 14.3 P e r c e i v e d S e v e r i t y (Median S p l i t ) High 3 37.5 4 57.1 Low 5 62.5 3 42.9 71 a d u l t . O n l y one r e s p o n d e n t b e l i e v e d t h a t an e a r l y l i f e e xperience was the s o l e f a c t o r p r e d i s p o s i n g him to a r t h r i t i s . The second stage of the process r e q u i r e s the occurrence of some t y p e o f eve n t which t r i g g e r s development of t h e a r t h r i t i s . Only two f a c t o r s were mentioned by respondents as a c t i v a t i n g t h e i r d i s e a s e . These were s t r e s s (58%) and i l l n e s s (42%). Not a l l respondents b e l i e v e d that t h e i r a r t h r i t i s was the r e s u l t o f a t w o - s t a g e p r o c e s s . Two p a t i e n t s (13%) had e x p l a n a t i o n s as t o why th e y were p r e d i s p o s e d towards the d i s e a s e , but were not aware of any e v e n t s t h a t might have a c t i v a t e d the d i s e a s e . Conversely, four p a t i e n t s (21%) were a b l e t o p i n p o i n t f a c t o r s which t r i g g e r e d the a r t h r i t i s , but d i d not b e l i e v e t h a t t h e y were somehow prone t o g e t t i n g a r t h r i t i s . However, the m a j o r i t y of respondents (66%) f e l t t hat both f a c t o r s were necessary. I t i s i n t e r e s t i n g to note t h a t a l l four respondents l i s t i n g a t r i g g e r i n g f a c t o r as the s o l e cause of t h e i r a r t h r i t i s were nonadherents. A second p a r t of the e x p l a n a t o r y model e x p l o r e d w i t h p a t i e n t s was treatment e x p e c t a t i o n s . Treatment e x p e c t a t i o n s r e f e r to s p e c i f i c types of treatment p a t i e n t s remember that they were hoping to get from the A r t h r i t i s S o c i e t y p r i o r to the agency's involvement i n t h e i r c a r e . Types of treatment mentioned by p a t i e n t s were e x e r c i s e (35%), other treatments (e.g medication) (15%), and i n f o r m a t i o n (50%). With regards to these t r e a t m e n t e x p e c t a t i o n s , a d h e r e n t s were much more 72 l i k e l y to have expected the procurement of i n f o r m a t i o n (100%), than were nonadherents (42.9%). The second treatment e x p e c t a t i o n component was whether p a t i e n t s f e l t t h a t cure and/or c o n t r o l of t h e i r d i s e a s e was p o s s i b l e . No d i f f e r e n c e s were evident between the two groups with respect to t h e i r b e l i e f i n the a b i l i t y of the A r t h r i t i s S o c i e t y to cure or c o n t r o l t h e i r d i s e a s e . Nature of the Il l n e s s The o n l y f a c t o r r e l a t e d to the i l l n e s s i t s e l f which had some r e l a t i o n to adherence was the presence of other medical problems. What the f i n d i n g s show i s t h a t nonadherents were more l i k e l y to have other medical problems (75.0%) than were adherents (42.9%) (see Table 8 ) . I n s e r t Table 8 about here T a b l e 9 l i s t s o t h e r m e d i c a l p r o b l e m s e x p e r i e n c e d by respondents i n a d d i t i o n to t h e i r primary a r t h r i t i s d i a g n o s i s . I n s e r t Table 9 about here S a t i s f a c t i o n with P r a c t i t i o n e r A t t r i b u t e s Table 10 i n d i c a t e s the r e l a t i o n s h i p between s a t i s f a c t i o n and adherence. 73 Table 8 C r o s s - T a b u l a t i o n : Nature of the I l l n e s s by Adherence Presence of other Nonadherents Adherents Medical Problems No. % No. % n = 8 n = 7 Yes No 6 2 75.0 25.0 3 4 42.9 57.1 74 Table 9 Other Medical Problems Reported by Study Respondents Medical Problem Number of P a t i e n t s Reporting Problem Depression 3 R e i t e r ' s Syndrome* 2 Hypertension 2 F i b r o s i t i s * 1 B r o n c h i a l Asthma 1 Back I n j u r y 1 Hiatus Hernia 1 E p i s c l e r i t i s * 1 denotes medical problems that are a form of a r t h r i t i s 75 In s e r t Table 10 about here As can be seen, the o n l y f a c t o r which shows any degree o f s i g n i f i c a n c e i s a f f e c t i v e care. C r o s s - t a b u l a t i o n s (Table 11) p o i n t out t h a t nonadherents were somewhat more unhappy w i t h t h e i r p h y s i o t h e r a p i s t s l e v e l o f a f f e c t i v e c a r e than were adherents. I n s e r t Table 11 about here Shared R e s p o n s i b i l i t y T a b l e 12 i l l u s t r a t e s the c r o s s - t a b u l a t i o n s of the f o u r shared r e s p o n s i b i l i t y models by adherence. I n s e r t Table 12 about here Table 13 i l l u s t r a t e s the same data w i t h m e d i a n - s p l i t c r o s s -t a b u l a t i o n s . I t was found with the f i r s t c r o s s - t a b u l a t i o n that i n d i v i d u a l accumulated scores were tending to c l u s t e r a t the low or h i g h ends of the continuum, thus b l u r r i n g the a c t u a l d i f f e r e n c e s between the two groups. By c a r r y i n g out the s p l i t - m e d i a n c r o s s - t a b u l a t i o n these d i f f e r e n c e s were made Table 10 T-Test A n a l y s i s of P a t i e n t S a t i s f a c t i o n with P r a c t i t i o n e r A t t r i b u t e s with Adherence A f f e c t i v e Care Mean* SD T 2 - T a i l Prob nonadherents 18.1 3.4 1.07 0.302 adherents 21.3 7.5 1.07 0.302 * Means were obtained by f i r s t summing the scores on the nine items r e l a t e d to a f f e c t i v e c a r e . The mean thus r e p r e s e n t s the average t o t a l score of each respondent i n each of the two groups 77 Table 11 C r o s s - T a b u l a t i o n s ; P a t i e n t S a t i s f a c t i o n with P r a c t i t i o n e r  A t t r i b u t e s by Adherence P r a c t i t i o n e r Nonadherents Adherents A t t r i b u t e s No. % No. % n = 8 n = 7 A f f e c t i v e Care S a t i s f i e d D i s s a t i s f i e d 6 2 75.0 25.0 7 0 100.0 0.0 A f f e c t i v e Care (Median S p l i t ) S a t i s f i e d 5 62.5 3 42.9 D i s s a t i s f i e d 3 37.5 4 57.1 78 Table 12 C r o s s - T a b u l a t i o n s : Shared R e s p o n s i b i l i t y Models by Adherence Shared R e s p o n s i b i l i t y Nonadherents Adherents Model No. % No. % n = 8 n = 7 Moral Model (High Blame/High C o n t r o l ) Low 3 37.5 1 14.3 High 5 62.5 6 85.7 Medical Model Low Blame/Low C o n t r o l ) Low 7 87.5 6 85.7 High 1 12.5 1 14.3 Compensatory Model (Low Blame/High C o n t r o l ) Low 0 0.0 0 0.0 High 8 100.0 7 100.0 Enlightenment Model (High Blame/Low C o n t r o l ) Low 7 87.5 5 71.4 High 1 12.5 2 28.6 79 more d i s t i n c t . I n s e r t Table 13 about here I t can be seen t h a t both nonadherents and adherents showed themselves to be s o l i d proponents of the compensatory model (low blame/high c o n t r o l ) . However, one of the d i f f e r e n c e s which i s e v i d e n t i s t h a t nonadherents were more u n i f o r m i n t h e i r c h o i c e o f a d o p t e d m o d e l , t h a n the a d h e r e n t s . In a d d i t i o n t o s c o r i n g h i g h on t h e c o m p e n s a t o r y m o d e l , n o n a d h e r e n t s a l s o had low m e d i c a l model (low blame/low c o n t r o l ) and e n l i g h t e n m e n t ( h i g h blame/low c o n t r o l ) model sc o r e s . In f a c t , the s p l i t median c r o s s - t a b u l a t i o n s i n d i c a t e t h a t the nonadherents had c o n s i d e r a b l y lower scores than the a d h e r e n t s f o r t h e s e two models. T h i s shows t h a t a l t h o u g h adherents and nonadherents were proponents of the compensatory model (low blame/high c o n t r o l ) , the nonadherents were more s t r o n g l y uniform i n r e j e c t i n g other models which propound low l e v e l s of c o n t r o l . According to theory, shared r e s p o n s i b i l i t y s cores of the respondents s h o u l d be p a i r e d w i t h the shared r e s p o n s i b i l i t y scores of the p h y s i o t h e r a p i s t s i n order to determine i f t h e r e i s a match between the two adopted models. As d i s c u s s e d i n the l i t e r a t u r e review, adherence should be higher f o r p a t i e n t s who h o l d the same adopted model as the p h y s i o t h e r a p i s t with whom they a r e w o r k i n g . U n f o r t u n a t e l y f o r t h i s s t u d y two 80 Table 13 C r o s s - T a b u l a t i o n s : Shared R e s p o n s i b i l i t y Models by Adherence  (Median S p l i t ) Shared R e s p o n s i b i l i t y Nonadherents Adherents Model No. % No. % n = 8 n = 7, Moral Model (High Blame/High C o n t r o l ) Low 5 62.5 3 42.9 High 3 37.5 4 57.1 Medical Model (Low Blame/Low C o n t r o l ) Low 6 75.0 2 28.6 High 2 25.0 5 71.4 Compensatory Model (Low Blame/High C o n t r o l ) Low 4 50.0 4 57.1 High 4 50.0 3 42.9 Enlightenment Model (High Blame/Low Con t r o l ) Low 5 62.5 2 28.6 High 3 37.5 5 71.4 81 f a c t o r s prevented t h i s p a i r i n g from t a k i n g p l a c e . Some of the p a t i e n t s have had more than one p h y s i o t h e r a p i s t p r o v i d i n g t r e a t m e n t , and t h u s i t was i m p o s s i b l e t o d e c i d e w h i c h p h y s i o t h e r a p i s t to choose f o r the comparison. Secondly, three p h y s i o t h e r a p i s t s who o r i g i n a l l y p r o v i d e d c a r e f o r t h e s e p a t i e n t s were no l o n g e r at the A r t h r i t i s S o c i e t y , and thus c o u l d not be t e s t e d . For the sake of i n t e r e s t , the adopted models of the nine p h y s i o t h e r a p i s t s who were t e s t e d were as f o l l o w s : m e d i c a l model ( 1 ) , moral model ( 4 ) , compensatory model (4). Th i s suggests t h a t , on the whole, p h y s i o t h e r a p i s t s at the A r t h r i t i s S o c i e t y f e e l that i t i s important f o r t h e i r p a t i e n t s to have c o n t r o l . However, there are mixed f e e l i n g s among these s t a f f members as to the degree to which p a t i e n t s should be blamed f o r t h e i r problems. O v e r a l l S a t i s f a c t i o n T - t e s t a n a l y s i s i n d i c a t e s t h a t few d i f f e r e n c e s e x i s t b e t w e e n t h e o v e r a l l s a t i s f a c t i o n o f a d h e r e n t s a n d nonadherents. A t t i t u d e s of S i g n i f i c a n t Others No r e l a t i o n s h i p was i n d i c a t e d between a t t i t u d e s o f s i g n i f i c a n t others and adherence. However, i t i s i n t e r e s t i n g t o n o t e t h a t a d v i c e from o t h e r s w i l l sometimes a f f e c t adherence. For example, one respondent s t a t e s t h a t he was p r e v i o u s l y adherent u n t i l he t a l k e d with a f r i e n d who had a 82 s i m i l a r medical problem. Having had to endure a amount o f p a i n as a r e s u l t o f e x e r c i s i n g , h i s s t o p p e d d o i n g e x e r c i s e s . Upon h e a r i n g t h i s respondent decided to do the same, as he was a l s o e x e r c i s e s p a i n f u l to c a r r y out. Use o f A l t e r n a t i v e Treatments No d i f f e r e n c e s were found between the use of a l t e r n a t i v e treatments by adherents and nonadherents. Problems with the Home E x e r c i s e Program When p a t i e n t s were a s k e d t o respond t o a v a r i e t y o f problems p r e v i o u s l y f o u n d t o be a s s o c i a t e d w i t h the home e x e r c i s e program, i t was d i s c o v e r e d from median t e s t a n a l y s i s that adherents had l e s s problems with t h e i r e x e r c i s e s than d i d nonadherents (see Tab l e 14). A n a l y s i s shows t h a t 71.4% of adherents are equal to or below the median, while o n l y 37.5% of the nonadherents a re i n the same p o s i t i o n . A p o s i t i o n below the median i n d i c a t e s r e l a t i v e freedom from e x e r c i s e problems. I n s e r t Table 14 about here s i g n i f i c a n t f r i e n d had news, t h e f i n d i n g the One of the problems mentioned by respondents was that i t i s hard doing e x e r c i s e s on one's own. Th i s was a p t l y d e s c r i b e d 83 Table 14 Median Test A n a l y s i s of Problems with the Home E x e r c i s e  Program with Adherence Home Ex e r c i s e Program Problems Nonadherents No. % n = 8 Adherents No. % n = 7 Few (LE Median) 3 37.5 5 71.4 Many (GT Median) 5 62.5 2 28.6 Exact P r o b a b i l i t y .3147 84 by one person when he s t a t e d , " I t ' s l i k e h a v i ng a s k i p p i n g rope. You've got one, but i f there i s nobody e l s e s k i p p i n g rope around you j u s t tend to f o r g e t about i t " . In making a r e f e r e n c e to how p a i n f u l e x e r c i s e s c o u l d be, another p a t i e n t s t a t e d , "I t h i n k we used to go every week and a f t e r the f i r s t week I was too s o r e . Things were g e t t i n g worse, and worse, and worse, and I j u s t q u i t going". Other problems mentioned by r e s p ondents were the l a c k of improvement, the f a c t t h a t e x e r c i s e s were u n i n t e r e s t i n g , and the frequent l a c k of energy needed to do the e x e r c i s e s . 85 DISCUSSION V a r i a b l e s R e l a t e d to S e l f - R e p o r t e d Measures of Adherence What the study shows i s that there are three v a r i a b l e s w h i c h show d i f f e r e n c e s when c o m p a r i s o n i s made between a d h e r e n t s and n o n a d h e r e n t s . T h e s e t h r e e a r e p e r c e i v e d s e v e r i t y , problems with the home e x e r c i s e program, and nature of the i l l n e s s . As d i s c u s s e d p r e v i o u s l y , p e r c e i v e d s e v e r i t y i s one of the two elements of the H e a l t h B e l i e f s Model which are f e l t t o be m o t i v a t i n g f o r c e s behind the i n i t i a t i o n of h e a l t h b e h a v i o u r s . In t h i s s i t u a t i o n the f i n d i n g t h a t adherents were more l i k e l y to p e r c e i v e the f u t u r e p r o b l e m a t i c nature of t h e i r d i s e a s e was s u r p r i s i n g , c o n s i d e r i n g the f a c t t h a t p e r c e i v e d s u s c e p t i b i l i t y was a l s o h i g h a c r o s s most r e s p o n d e n t s . T h i s s u p p o r t s Rosenstock's (1974) c o n t e n t i o n that not o n l y must p e r c e i v e d s u s c e p t i b i l i t y be h i g h t h r o u g h t h e p r e s e n c e o f a c t i v e symptoms, but p a t i e n t s must a l s o p e r c e i v e the f u t u r e s e v e r i t y o f t h e i r d i s e a s e i f i t i s l e f t u n t r e a t e d . As R o s e n s t o c k (1974) suggests, p e r c e i v e d s e v e r i t y and s u s c e p t i b i l i t y o n l y p r o v i d e the m o t i v a t i o n f o r engaging i n some type of h e a l t h behaviour. The h e a l t h behaviour which i s chosen depends on the p e r c e i v e d r i s k s and b e n e f i t s of each of the a l t e r n a t i v e s . In t h i s study, n e i t h e r adherents or nonadherents showed much d i f f e r e n c e i n t h e i r p e r c e p t i o n s of r i s k s and b e n e f i t s of the home e x e r c i s e program. However, what was e v i d e n t was the 86 s i g n i f i c a n c e of a. s i m i l a r v a r i a b l e which asked p a r t i c i p a n t s to respond to a v a r i e t y of problems p a t i e n t s normally experience with t h e i r home e x e r c i s e programs. What the study found was t h a t a d h e r e n t s r e p o r t e d l e s s p r o b l e m s w i t h t h e i r home e x e r c i s e s , than d i d nonadherents. T h i s supports the v e r a c i t y of the Hea l t h B e l i e f s Model which a s s e r t s that not only must a p a t i e n t be motivated to engage i n h e a l t h behaviours, but they w i l l o n l y engage i n those b e h a v i o u r s which have the l e a s t c o s t s a t t a c h e d t o them. One p o s s i b l e reason to e x p l a i n why the p e r c e i v e d r i s k s v a r i a b l e d i d not come up w i t h the same f i n d i n g s as the other v a r i a b l e , i s that the v a r i a b l e r e l a t e d to home e x e r c i s e problems was much more s p e c i f i c , and was thus s e n s i t i v e to p a r t i c u l a r problems p a t i e n t s might be having w i t h t h e i r home e x e r c i s e programs. One q u e s t i o n which i s r a i s e d by these f i n d i n g s i s that i f nonadherents are f o r s a k i n g t h e i r home e x e r c i s e s because of the problems which they are e x p e r i e n c i n g , what o p t i o n s are they c h o o s i n g i n i t s s t e a d . In t h e hopes of a n s w e r i n g t h i s q u e s t i o n , respondents were asked to remark on t h e i r use of a l t e r n a t i v e t h e r a p i e s . What was found was t h a t 62.5% of nonadherents use unorthodox t h e r a p i e s , and 37.5% do not use any form of treatment whatsoever. I n t e r e s t i n g l y enough, i t was f o u n d t h a t l i t t l e d i f f e r e n c e e x i s t e d i n the use of marginal t h e r a p i e s by e i t h e r adherents or nonadherents. T h i s might be e x p l a i n e d by the f a c t t h at some of the p a t i e n t s were found to be u s i n g both t r a d i t i o n a l and n o n t r a d i t i o n a l forms of 87 treatment i n attempting to c o n t r o l t h e i r a r t h r i t i s . Thus, the nonadherents who turned to a l t e r n a t i v e t h e r a p i e s a f t e r having a n e g a t i v e e x p e r i e n c e w i t h t h e i r home e x e r c i s e s , were countered by adherents who a l s o used a l t e r n a t i v e treatments, i n a d d i t i o n to t h e i r home e x e r c i s e program. T h i s f i n d i n g i s echoed by Kronenfeld and Wasner (1982) who n o t i c e d that many p a r t i c i p a n t s i n t h e i r study a l s o made use of a combination of orthodox and unorthodox t h e r a p i e s . The l a s t v a r i a b l e i s nature of the i l l n e s s . As d e s c r i b e d i n the p r e v i o u s s e c t i o n , i t was found that nonadherents were more l i k e l y to have ot h e r m e d i c a l problems, i n a d d i t i o n t o t h e i r primary a r t h r i t i s d i a g n o s i s , than were adherents. What t h i s may s u g g e s t i s t h a t t h e p r e s e n c e o f o t h e r m e d i c a l problems d i m i n i s h e s the importance a t t a c h e d to t r e a t i n g the a r t h r i t i s . When an i n d i v i d u a l has a s i n g l e i l l n e s s , they a re a b l e t o d e v o t e t h e i r f u l l a t t e n t i o n t o i t s c a r e . The o c c u r r e n c e o f an a d d i t i o n a l m e d i c a l p r o b l e m may d e f l e c t a t t e n t i o n from the f i r s t , i f the second problem i s p e r c e i v e d as being more s e r i o u s . Even i f i t i s not p e r c e i v e d as being more important, m u l t i p l e medical problems means that a t t e n t i o n has to be a l l o t t e d between each of the i l l n e s s e s . At t h i s p o i n t i n time t h e s e s u g g e s t i o n s a re s p e c u l a t i v e . F u r t h e r r e s e a r c h i s n e c e s s a r y t o d e t e r m i n e how the p r e s e n c e o f m u l t i p l e m e d i c a l p r o b l e m s i n c r e a s e s t h e l i k e l i h o o d o f nonadherence. From the f i n d i n g s of t h i s study i t i s apparent that the 88 H e a l t h B e l i e f s M o d e l comes c l o s e s t t o e x p l a i n i n g t h e nonadherence which was p r e s e n t i n t h i s sample of a r t h r i t i s p a t i e n t s . As d i s c u s s e d e a r l i e r , once a cause f o r nonadherence i s found, one can then begin e f f o r t s to r e c t i f y the s i t u a t i o n . One i n t e r v e n t i o n which i s p a r t i c u l a r l y apt f o r working with people's h e a l t h b e l i e f s i s a process c a l l e d c o n t r a c t i n g . L i m i t a t i o n s of the Study Some of the shortcomings of t h i s study mentioned i n t h i s s e c t i o n have been d i s c u s s e d at g r e a t e r l e n g t h elsewhere i n t h i s p aper. For the sake of b r e v i t y they w i l l be b r i e f l y r e i t e r a t e d . The l i m i t a t i o n of most import i n t h i s study has been the lack of a l a r g e enough sample to ensure the d e t e c t i o n of any s i g n i f i c a n t f i n d i n g s t h a t may have been p r e s e n t . As the s i t u a t i o n now stands, f i n d i n g s of any s t a t i s t i c a l s i g n i f i c a n c e remain o b s c u r e d from a n a l y s i s . The weakened power of the a n a l y t i c t e c h n i q u e s i s a d i r e c t r e s u l t of the s i z e of the sample. T h i s i s known as a Type Two E r r o r . However, l a c k of s t a t i s t i c a l s i g n i f i c a n c e a s i d e , the f i n d i n g s can s t i l l p o i n t to v a r i a b l e s of p o t e n t i a l s i g n i f i c a n c e that are d e s e r v i n g of f u r t h e r a t t e n t i o n . A second l i m i t a t i o n of t h i s study i s the f a c t that i t was r e t r o s p e c t i v e i n n a t u r e . T h i s can be p r o b l e m a t i c due to respondents d i f f i c u l t i e s with memory r e c a l l . B a i l e y (1982) r e p o r t i n g on Kinsey's sex research f i n d i n g s , s t a t e s that the 89 most d i f f i c u l t y people have with behaviour r e c a l l i s i n terms of f r e q u e n c y , and r e p o r t i n g when a b e h a v i o u r f i r s t began. However, l i t t l e d i f f i c u l t y seemed e v i d e n t w i t h respondents r e p o r t i n g types of behaviour they had engaged i n . He goes on to s t a t e t h a t two rules-of-thumb w i t h r e s p e c t t o behaviour r e c a l l , a re th a t the f a l l i b i l i t y o f memory i n c r e a s e s as the s a l i e n c e of the behaviour to the i n d i v i d u a l decreases, and as the time p e r i o d of the r e c a l l i n c r e a s e s . Thus, a behaviour of l i t t l e meaning, a short while ago, w i l l be more d i f f i c u l t to remember than a behaviour of some import which took p l a c e a number of years ago. The d i f f i c u l t y i n t r a n s p o s i n g t h i s i n f o r m a t i o n to the c h r o n i c nonadherence study i s t h a t the o n l y q u e s t i o n s which are b e h a v i o r a l i n nature, are those which attempt to determine r e s p o n d e n t ' s a d h e r e n c e b e h a v i o u r s . I n s t e a d most o f t h e q u e s t i o n s i n the stud y a r e aimed a t u n c o v e r i n g r e s p o n d e n t b e l i e f s , thoughts and f e e l i n g s . U n f o r t u n a t e l y no i n f o r m a t i o n c o u l d be found which addressed memory r e c a l l i n these a r e a s . With r e g a r d t o a d h e r e n c e , B a i l e y would s u g g e s t t h a t t h e s a l i e n c e o f the event to the i n d i v i d u a l would g o v e r n the accuracy of h i s or her s e l f - r e p o r t . Since i t i s probable t h a t each i n d i v i d u a l views h i s or her home e x e r c i s e program with v a r y i n g degrees of importance, i t i s d i f f i c u l t to assess the v e r i d i c a l i t y of any one respondent. In the f u t u r e , use of a p r o s p e c t i v e d e s i g n would decrease the v a r i a t i o n i n a c c u r a c y caused by v a r i a b l e memory r e c a l l . 90 A t h i r d l i m i t a t i o n of t h i s study was that i t proved to be i m p o s s i b l e to measure one of the more important v a r i a b l e s i n the study. As i n d i c a t e d i n p r i o r d i s c u s s i o n , measurement of t h e s h a r e d r e s p o n s i b i l i t y v a r i a b l e r e q u i r e d an a c c u r a t e a s s e s s m e n t o f b o t h t h e p a t i e n t ' s and t h e p r a c t i t i o n e r ' s a d o p t e d model. S i n c e c o m p l 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 measurement of a l l the p h y s i o t h e r a p i s t ' s adopted models, the necessary p a i r i n g of models co u l d not be c a r r i e d out. Thus, i n a c t u a l f a c t , the f i n d i n g s are mute with respect to shared r e s p o n s i b i l i t y b e cause o f the i n a b i l i t y o f the d e s i g n t o s u c c e s s f u l l y t e s t t h i s v a r i a b l e . With l i t t l e i n f o r m a t i o n on shared r e s p o n s i b i l i t y , i t was d i f f i c u l t to a s c e r t a i n the r o l e w h i c h c o n t r o l p l a y s i n p a t i e n t n o n a d h e r e n c e . As w i t h respondent r e c a l l , a p r o s p e c t i v e design would help ensure an accurate measurement of the shared r e s p o n s i b i l i t y v a r i a b l e as both p a t i e n t ' s and p h y s i o t h e r a p i s t ' s models co u l d be assessed c o n c u r r e n t l y . The l a s t shortcoming of t h i s study was that there was a lack of a c l e a r d e f i n i t i o n of c h r o n i c nonadherence p r i o r to choosing the c h r o n i c nonadherent group. Thus, there i s some c o n f u s i o n as t o whether the nonadherence a d m i t t e d t o by r e s p o n d e n t s p r i o r t o t h e i r s e l e c t i o n f o r t h e c h r o n i c nonadherent group i s the same as the l e v e l of nonadherence which was l a t e r chosen to d e f i n e t h i s v a r i a b l e . For example, some members of the c h r o n i c nonadherent group may have based t h e i r a d m i s s i o n o f n o n a d h e r e n c e on t h e f a c t t h a t t h e y 91 o c c a s i o n a l l y f o r g o t to do t h e i r e x e r c i s e s . By the d e f i n i t i o n which was l a t e r chosen f o r the study, these p a t i e n t s would not be considered nonadherent. I m p l i c a t i o n s f o r S o c i a l Work P r a c t i c e ; The C o n t r a c t i n g  Process C o n t r a c t i n g i s a m u l t i - s t a g e p r o c e s s which i s meant t o i n c r e a s e an i n d i v i d u a l ' s a d h e r e n c e t o t h e i r t h e r a p e u t i c regimes by a l l o w i n g greater s e l f - r e s p o n s i b i l i t y f o r c a r e . The t h r e e s t e p s i n v o l v e d i n t h i s p r o c e s s a r e a s s e s s m e n t , n e g o t i a t i o n and c o n t r a c t i n g . A u s e f u l p l a c e t o b e g i n an a s s e s s m e n t i s w i t h t h e person's thoughts and f e e l i n g s about h i s or her i l l n e s s . Two t h e o r e t i c a l f o r m u l a t i o n s which help to examine these thoughts a r e the H e a l t h B e l i e f s Model and the p a t i e n t ' s e x p l a n a t o r y model. Both models have ques t i o n s which the p r a c t i t i o n e r can use to determine the meaning that p a t i e n t s give t h e i r i l l n e s s . M e a n i n g s a r e i m p o r t a n t f o r t h e y f o r m t h e b a s i s o f an i n d i v i d u a l ' s behaviour. An i n t e r e s t i n g a p p r o a c h t o t h e s u b j e c t comes f r o m Schwartz and W i g g i n s (1986) who l o o k a t meaning from the p e r s p e c t i v e of systems t h e o r y . From a systems approach an i n d i v i d u a l i s seen as an open system which exchanges m a t e r i a l between i t s e l f and i t s environment. Although these m a t e r i a l s are e s s e n t i a l f o r growth, i t i s necessary f o r the system to l i m i t the q u a l i t y and q u a n t i t y of m a t e r i a l s that are taken i n . For example, our body only needs c e r t a i n amounts df p r o t e i n , c a r b o h y d r a t e s , sugars, m i n e r a l s , and v i t a m i n s . In a s i m i l a r manner, the body must a l s o l i m i t the exchange of i n f o r m a t i o n between i t s e l f and the environment. T h i s i s necessary i n an environment which has much more i n f o r m a t i o n than i s r e a d i l y a s s i m i l a b l e . The means to b r i n g about t h i s r e d u c t i o n i s t h r o u g h the use o f m e a n i n g - s t r u c t u r e s . As Sc h w a r t z and Wiggins (1986) s t a t e , "meaning-structures e f f e c t a r e d u c t i o n of c o m p l e x i t y t h a t i s necessary f o r human e x i s t e n c e because they unburden human l i f e of a complexity which would otherwise remain overwhelming and unmanageable" (p.1216). M e a n i n g - s t r u c t u r e s r e f e r to how we order the world, and they a r e formed through a combination of s o c i a l i z a t i o n and p e r s o n a l e x p e r i e n c e s . Green t r a f f i c l i g h t s mean go, yellow means c a u t i o n , and red means stop. When one has a fever i t means one should go t o bed and get p l e n t y of r e s t . When one's f e v e r does not go away, one should see a doc t o r . These are examples of p i e c e s o f i n f o r m a t i o n which most people i n our c u l t u r e a r e f a m i l i a r w i t h , but which may be f o r e i g n t o an a d u l t l i v i n g i n a s m a l l v i l l a g e i n I n d i a . Thus, meaning-s t r u c t u r e s a c t by o r d e r i n g the w o r l d o f e x p e r i e n c e i n t o f a m i l i a r and u n f a m i l i a r . I n f o r m a t i o n w i t h w hich we a r e f a m i l i a r has a d e f i n i t e p l a c e i n t h i s s t r u c t u r e . Information which does not make sense or f i t i n t o t h i s s t r u c t u r e i s dis c a r d e d or ignored. D e n i a l as a common defense mechanism i s an example of a method humans employ to d i s r e g a r d i n f o r m a t i o n 93 which does not f i t . T h i s p r o v i d e s one e x p l a n a t i o n as to why p r a c t i t i o n e r s need to assess the p a t i e n t ' s h e a l t h b e l i e f s and e x p l a n a t o r y model. As p a r t s of the p a t i e n t ' s meaning-structure, these two f a c t o r s determine what i n f o r m a t i o n w i l l be accepted, and what w i l l be d i s r e g a r d e d . T h i s p o i n t i s borne out i n the case of Mr. 'Z 1, a gentleman i n h i s l a t e 40's who p a r t i c i p a t e d i n t h i s study. Mr. 'Z' has had o s t e o a r t h r i t i s involvement i n many of the major j o i n t s i n h i s body f o r the past f i v e to ten y e a r s . At the b e g i n n i n g of h i s i l l n e s s he was a p a t i e n t a t the A r t h r i t i s S o c i e t y , but he has now been i d e n t i f i e d as a c h r o n i c treatment nonadherent. T h i s means t h a t p r a c t i t i o n e r s a r e h e s i t a n t to work with him because i t i s f e l t t h a t he w i l l not f o l l o w treatment recommendations. In t a l k i n g with Mr. 'Z' i t became apparent that he has two s t r o n g values with r e s p e c t to h i s h e a l t h . One of these i s that i t i s very important f o r him t o be a c t i v e and i n d e p e n d e n t . In f a c t , one of h i s b i g f r u s t r a t i o n s i s t h a t he d o e s n o t f e e l t h a t h e a l t h p r a c t i t i o n e r s u n d e r s t a n d h i s v a l u e s . In r e f e r r i n g t o the e x e r c i s e program t h a t was g i v e n t o him he s t a t e s , " t h e y thought I was supposed to j u s t do t h e i r e x e r c i s e s and s h r i v e l up and d i e . That was the o p i n i o n I got from them anyway". In h i s mind they were not understanding how important i t was f o r him to remain a c t i v e . The second value h e l d by Mr. 'Z' i s the i m p o r t a n c e o f h a v i n g i n f o r m a t i o n i n o r d e r to cope w i t h a s i t u a t i o n . In the past Mr. 'Z' has found that i t i s d i f f i c u l t 94 g e t t i n g a c c u r a t e m e d i c a l i n f o r m a t i o n f r o m h e a l t h p r a c t i t i o n e r s , and thus he tends to be m i s t r u s t f u l of t h e i r recommendations. Because of t h i s m i s t r u s t he has l e a r n e d t o t r u s t h i s own body to t e l l him which treatments are e f f e c t i v e a n d w h i c h a r e n o t . T h u s , when he f o u n d t h a t t h e p h y s i o t h e r a p i s t was not understanding h i s need f o r a c t i v i t y , he went back to a method of s e l f - r e l i a n c e which he had found to work i n the p a s t . I f the p h y s i o t h e r a p i s t had assessed Mr. 'Z's h e a l t h b e l i e f s and e x p l a n a t o r y model, she would have r e c o g n i z e d these p o t e n t i a l problems and c o u l d have t r i e d t o take them i n t o c o n s i d e r a t i o n . In t h e c o n t r a c t i n g p r o c e s s , once the p r a c t i t i o n e r i s aware of the c l i e n t ' s thoughts about h i s or her i l l n e s s and how i t should be t r e a t e d , the p r a c t i t i o n e r can then comment on the v a l i d i t y o f t h e s e t h o u g h t s based on c u r r e n t m e d i c a l knowledge. The p a t i e n t responds, and so begins a back and f o r t h d i a l o g u e which c o n c l u d e s w i t h some type of m u t u a l l y a g r e e d upon d i a g n o s t i c and t r e a t m e n t p l a n . D u r i n g t h i s n e g o t i a t i o n the p a t i e n t i s a b l e to d i s c u s s p o t e n t i a l problems wi t h the t r e a t m e n t , and o f f e r p o s s i b l e s o l u t i o n s (Becker & Maiman, 1980). Upon a r r i v i n g a t an agreement, the p l a n i s w r i t t e n up and s i g n e d by the p a t i e n t . Some research on the e f f i c a c y of c o n t r a c t i n g has a l s o i n c l u d e d the use of rewards for good adherence (Lowe & Lutzher, 1979; Mann, 1972). T h i s i s known as contingency c o n t r a c t i n g . T h i s research has shown that the use of rewards or reinforcements has been e f f e c t i v e 95 i n modifying behaviour r e l a t e d to o b e s i t y , j u v e n i l e d i a b e t e s , c a r d i o v a s c u l a r d i s e a s e , r e n a l f a i l u r e and drug abuse (Becker & Maiman, 1980). However, what does not seem to be known i s the long term e f f i c a c y of the behaviour changes, or how one can move an i n d i v i d u a l from r e l i a n c e on an e x t e r n a l system of rewards, to p e r s o n a l r e s p o n s i b i l i t y f o r treatment adherence. For these reasons the contingency p a r t of the c o n t r a c t process has been d e l e t e d from f u r t h e r d i s c u s s i o n s of t h i s i n t e r v e n t i o n s t r a t e g y . U s i n g a p r o c e s s of n e g o t i a t i o n as d i s c u s s e d above puts the 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 on a more equal f o o t i n g . Power i s no l o n g e r h e l d by t h e p r a c t i t i o n e r as i t i s r e c o g n i z e d t h a t both p a r t i e s have an equal p a r t to p l a y i n d e v e l o p i n g a treatment p l a n . Using n e g o t i a t i o n with Mr. ' Z' would have allowed him the chance to v o i c e h i s d i s s a t i s f a c t i o n with the e x e r c i s e program he was o r i g i n a l l y g i v e n . He would then have been given a chance to s t a t e h i s own p r e f e r e n c e s f o r the treatment. The p h y s i o t h e r a p i s t c o u l d then have responded to t h i s , and so on, u n t i l an agreement had been worked out which was s a t i s f a c t o r y to both. Mr. 'Z' would have l e f t t h i s i n t e r a c t i o n f e e l i n g t h a t he had been heard, and that h i s needs were understood by the p h y s i o t h e r a p i s t . An example of c o n t r a c t i n g at work i s g i v e n by Barofsky (1978) when he d i s c u s s e s a program set up at the Beth I s r a e l H o s p i t a l i n Boston. Designed to f a c i l i t a t e mutual problem-s o l v i n g , decision-making, and education, the program works by 96 f o c u s s i n g on the p a t i e n t ' s p e r s o n a l medical r e c o r d . P r i o r to meeting w i t h the p h y s i c i a n , the p a t i e n t j o t s down symptoms which s/he has been e x p e r i e n c i n g . In the ensuing i n t e r a c t i o n these symptoms are d i s c u s s e d , and a j o i n t p l a n of a c t i o n i s dec i d e d upon. T h i s p l a n i s re c o r d e d by the p a t i e n t and i s then signed by both p a r t i e s . As a r e s u l t of t h i s t r a n s a c t i o n b o t h s i d e s have n e g o t i a t e d a t r e a t m e n t p l a n . T h i s i s b e n e f i c i a l because the p a t i e n t now has a c l e a r r e c o r d of h i s or her r e s p o n s i b i l i t i e s , and the p a t i e n t has a l s o made a w r i t t e n commitment to f o l l o w the p l a n o u t l i n e d i n the medical record. In summary, the b e n e f i t s of engaging the p a t i e n t i n a c o n t r a c t i n g process are t h r e e - f o l d . The f i r s t b e n e f i t i s th a t a d i s c u s s i o n of treatment g o a l s r e q u i r e s an e x p l i c i t exchange of i n f o r m a t i o n as t o what i s r e q u i r e d of the p a t i e n t . As G a r r i t y (1981) s t a t e s , " t h e c o n t r a c t i n g p r o c e s s i n v o l v e s c o n c r e t e d i s c u s s i o n s of s p e c i f i c b e h a v i o u r s t h a t might be b e n e f i c i a l and how t h e y must be c a r r i e d o u t i n o r d e r t o f u l f i l l t h e c o n t r a c t and c l a i m any r e w a r d . From t h i s p e r s p e c t i v e contingency c o n t r a c t i n g may be viewed as a h i g h l y p r e c i s e approach to p a t i e n t e d u c a t i o n " (p.217). The second b e n e f i t of c o n t r a c t i n g i s that i t provides the p a t i e n t with a g r e a t e r s e n s e o f c o n t r o l . The l a s t b e n e f i t o f t h e c o n t r a c t i n g process r e l a t e s to the p u b l i c commitment which i s made by the p a t i e n t . Levy (1976) s t a t e s t h a t s t u d i e s have shown that adherence i s more l i k e l y to occur i f p a t i e n t s make 97 an o v e r t commitment to a p a r t i c u l a r treatment regimen. C o n t r a c t i n g - A Technique f o r Enhancing C o n t r o l As j u s t mentioned, the c o n t r a c t i n g process can r e s u l t i n an enhanced sense of p a t i e n t r e s p o n s i b i l i t y and c o n t r o l . T h i s p o t e n t i a l growth can be b e t t e r u n d e r s t o o d by l o o k i n g a t a number of c o n t r o l - e n h a n c i n g i n t e r v e n t i o n s as o u t l i n e d by F i s k e and T a y l o r (1984). Of those mentioned, the ones most r e l e v a n t to c o n t r a c t i n g are behaviour c o n t r o l , i n f o r m a t i o n c o n t r o l , and d e c i s i o n c o n t r o l . Behaviour c o n t r o l can be d e f i n e d as the a b i l i t y to take a c t i v e s t e p s t o end, r e d u c e the l i k e l i h o o d , d e c r e a s e the i n t e n s i t y , and/or a l t e r the d u r a t i o n or t i m i n g of an a v e r s i v e event ( F i s k e & T a y l o r , 1984). In the program d e s c r i b e d by Barofsky (1978), p a t i e n t s were giv e n a number of o p p o r t u n i t i e s to e x e r c i s e behaviour c o n t r o l . F i r s t of a l l , p a t i e n t s were i n charge of r e c o r d i n g symptoms p r i o r to v i s i t i n g the p h y s i c i a n . I t was then presumed that p a t i e n t s would v o i c e t h e i r o p i n i o n s and ask q u e s t i o n s d u r i n g t h e i n t e r v i e w . A d d i t i o n a l l y , p a t i e n t s were expected to f o l l o w the treatment p l a n which they themselves helped to c r e a t e . T h i s can be c o n t r a s t e d with the normal i n t e r a c t i o n i n which the p a t i e n t i s t o l d what to do, and i s then expected to comply. What i s l a c k i n g i n the l a t t e r t r a n s a c t i o n i s analogous to the d e f i c i e n c i e s i n h e r e n t i n an assembly l i n e method of p r o d u c t i o n . The c r i t i c i s m of assembly l i n e s i s t h a t workers have onl y one s m a l l p a r t to f a s t e n to 98 the c a r , and thu s f e e l l i t t l e attachment t o the f i n i s h e d p r o d u c t . In the same manner, most p a t i e n t s have no p a r t t o p l a y i n the development of a treatment p l a n , and thus f e e l no attachment to the recommendations t h a t have been g i v e n . On the other hand, i n the Beth I s r a e l H o s p i t a l program, p a t i e n t s have a pa r t to p l a y i n every step of the process, and thus are ab l e to take ownership of the treatment p l a n . D e c i s i o n c o n t r o l concerns the a b i l i t y to make some type of c h oice regarding the a v e r s i v e event ( F i s k e & T a y l o r , 1984). In the 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 the p h y s i c i a n i s l e g a l l y r e s p o n s i b l e f o r the p a t i e n t ' s medical care, and thus the f i n a l d e c i s i o n u l t i m a t e l y r e s t s w i t h the p r a c t i t i o n e r . However, t h i s s t i l l l eaves ample room f o r the p a t i e n t to make c h o i c e s w i t h i n t h i s arrangement. What the p r a c t i t i o n e r may do i s sug g e s t t o the p a t i e n t a number of a l t e r n a t i v e t r e a t m e n t s , i n f o r m i n g them of the pros and cons of each, and then a l l o w the p a t i e n t to choose the treatment which they f e e l w i l l be the e a s i e s t to f o l l o w . The b e n e f i t s of d e c i s i o n c o n t r o l have been i l l u s t r a t e d by Langer and Rodin (1976) i n a study which was conducted at a n u r s i n g home. In t h i s study one of the major d i f f e r e n c e s between the experimental and c o n t r o l group was that the former were g i v e n a number of c h o i c e s to make. They were allowed to be p a r t of the decision-making process as to how complaints would be handled i n the home, they were a b l e to choose a p l a n t to take care o f , and they had a c h o i c e of which night they wanted to see movies. In the c o n t r o l group 99 t h e s e c h o i c e s were a l r e a d y made f o r the r e s i d e n t s . The outcome o f t h e s e s m a l l t o k e n s of c o n t r o l was t h a t t h e e x p e r i m e n t a l group respondents were rated by both themselves and by o t h e r s as being s i g n i f i c a n t l y happier, more a l e r t , and more a c t i v e . However, one of the d i f f i c u l t i e s i n a t t r i b u t i n g the improvements to changes i n d e c i s i o n c o n t r o l i s that t h e r e was a s l i g h t m a nipulation i n the amount of behaviour c o n t r o l h e l d by each group. Experimental group members were allowed t o l o o k a f t e r t h e p l a n t s they chose, w h i l e c o n t r o l group members had the p l a n t s they were a r b i t r a r i l y g i v e n , cared f o r by one of the s t a f f members. Nevertheless, i n s p i t e of t h i s d i f f e r e n t i a t i o n of types of c o n t r o l , t h i s study i s a powerful example of the improvements p o s s i b l e when people a r e i n an environment i n which they are powerless. The l a s t category, i n f o r m a t i o n c o n t r o l , simply r e f e r s to the importance of o b t a i n i n g i n f o r m a t i o n about the a v e r s i v e event. Based on the e a r l i e r d i s c u s s i o n of meaning-structures, i t i s u n d e r s t a n d a b l e how i n f o r m a t i o n h e l p s p a t i e n t s to make sense o f , and o r d e r , e x p e r i e n c e s with which they have been p r e v i o u s l y u n f a m i l i a r . As F i s k e a n d T a y l o r s t a t e , " i n f o r m a t i o n c o n t r o l p r o v i d e s a schema f o r the event, that i s , a g e n e r a l u n d e r s t a n d i n g o f what w i l l h a p p e n and why. A c c o r d i n g l y , when people face the event, they can make sense of each i n d i v i d u a l step, and they know when something s i g n a l s a p o t e n t i a l problem" (p.122) In t h i s s t u d y i t was found t h a t r a t h e r than g o i n g t o the A r t h r i t i s S o c i e t y f o r treatment or c u r e , many new p a t i e n t s were p r i m a r i l y seeking i n f o r m a t i o n regarding how t h e i r i l l n e s s 100 works, and what they can do to cope with the a r t h r i t i s . Future Outlook As the scope of t h i s study has been very l i m i t e d there i s much that needs to be done i n the f u t u r e . S o c i a l work i s very much of a "hands-on" p r o f e s s i o n , and thus s o c i a l work r e s e a r c h s h o u l d h a v e p r a c t i c a l i m p l i c a t i o n s . In t h e c a s e o f nonadherence one p r a c t i c a l outcome of research should be the development of i n t e r v e n t i o n s t o enhance p a t i e n t adherence. T h i s s t u d y p a r t i a l l y meets t h i s o b l i g a t i o n by p o i n t i n g t o p o s s i b l e causes of c h r o n i c nonadherence i n a male a r t h r i t i s p o p u l a t i o n . However, i t must be s t r e s s e d that the r e s u l t s o f t h i s study are t e n t a t i v e . Lack of 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 i n d i n g s i n v i t e s prudence on the p a r t of anyone reviewing t h i s r e s earch. N e v e r t h e l e s s , two major f i n d i n g s have developed from t h i s study. One of the f i n d i n g s of t h i s study i s that the H e a l t h B e l i e f s Model seems to e x p l a i n why nonadherence was o c c u r r i n g w i t h i n t h i s sample. The i m p l i c a t i o n of t h i s f i n d i n g i s t h a t p r a c t i t i o n e r s need t o a s s e s s the h e a l t h b e l i e f s o f t h e i r p a t i e n t s , p r i o r to beginning treatment, i n order to p i n p o i n t and d e a l w i t h p o t e n t i a l c a u s a l f a c t o r s b e f o r e nonadherence o c c u r s . In o t h e r words, p r a c t i t i o n e r s need t o a d o p t a p r o a c t i v e r a t h e r than a r e a c t i v e s t a n c e . As t h i s s t u d y o f c h r o n i c nonadherence was conducted with a male p o p u l a t i o n , f u t u r e r e s e a r c h e r s should determine i f t h i s f i n d i n g i s a l s o 101 v a l i d with a female p o p u l a t i o n . The second f i n d i n g ( r e l a t e d to the a n a l y s i s d i s c u s s e d i n Appendix 3) i s that some f a c t o r was at work which r e s u l t e d i n some p a t i e n t s b e i n g l a b e l l e d i n a p p r o p r i a t e l y as c h r o n i c nonadherents. Numerous e x p l a n a t i o n s were provided, but i t was o u t s i d e the scope of t h i s research to a s c e r t a i n which of these e x p l a n a t i o n s was most c o r r e c t . However, the i m p l i c a t i o n of t h i s f i n d i n g i s that a change needs to take p l a c e with r e s p e c t to how p r a c t i t i o n e r s view nonadherence. Rather than seeing i t as deviant behaviour, i t should be viewed as a s i g n that the t h e r a p e u t i c process i s t e m p o r a r i l y d y s f u n c t i o n a l and needs to be a s s e s s e d . T h i s f i n d i n g i n t r o d u c e s a whole new a r e a of s t u d y , t h a t o f l a b e l l i n g t h e o r y and t h e d i s p e n s a t i o n of t h e r a p e u t i c s . I t would be i n t e r e s t i n g f o r f u t u r e r e s e a r c h e r s t o i d e n t i f y the d e g r e e t o which the l a b e l l i n g of d e v i a n t b e h a v i o u r o c c u r s i n a m e d i c a l s e t t i n g , and t o s t u d y t h e r a m i f i c a t i o n s o f t h e l a b e l l i n g p r o c e s s on p a t i e n t and p r a c t i t i o n e r behaviour. One i n t e r v e n t i o n t e c h n i q u e e x p l i c a t e d i n t h i s paper has been th e c o n t r a c t i n g p r o c e s s . The r e a s o n f o r c h o o s i n g c o n t r a c t i n g i s t h a t i t i s w e l l s u i t e d f o r d e a l i n g w i t h v o l u n t a r y n o n a d h e r e n c e w h i c h has been t h e r e s u l t o f a p a t i e n t ' s p a r t i c u l a r h e a l t h b e l i e f s . 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R e c e i v i n g m e d i c a l h e l p : A p s y c h o s o c i a l p e r s p e c t i v e on p a t i e n t s r e a c t i o n s . In A. N a d l e r , J . D. F i s h e r & B. M. D e P a u l o ( E d s . ) , New  D i r e c t i o n s i n H e l p i n g , Volume 3, New Y o r k : Academic Press. Z i s o o k , S. & Gammon, E. ( 1 9 8 0 ) . M e d i c a l n o n c o m p l i a n c e . I n t e r n a t i o n a l J o u r n a l of P s y c h i a t r y i n Medicine, 10(4), 291-303. I l l APPENDIX 1 S t r u c t u r e d Interview Schedule H e l l o . My name i s Paul Adam. I am a graduate student a t the U n i v e r s i t y of B r i t i s h Columbia. I am hoping to l e a r n more about how people react to a r t h r i t i s . T h e r e f o r e , I would l i k e t o t a l k t o you about your e x p e r i e n c e w i t h a r t h r i t i s , your e x p e r i e n c e w i t h the A r t h r i t i s S o c i e t y , and your e x p e r i e n c e with the treatments you have r e c e i v e d f o r the d i s e a s e . During t h i s i n t e r v i e w I am going to ask you a number of questions and then w r i t e down your answers. I f you are unable to understand what i s being asked of you, p l e a s e l e t me know and I w i l l repeat the q u e s t i o n f o r you. Many of the q u e s t i o n s seek t o f i n d out what your b e l i e f s a r e , thus t h e r e a r e no r i g h t or wrong a n s w e r s . A l l your answers w i l l be k e p t s t r i c t l y c o n f i d e n t i a l . Do you have any q u e s t i o n s ? (1) What type of medical problem(s) do you have? (2) Many people have d i f f i c u l t y b e l i e v i n g the d i a g n o s i s which t h e i r d o c t o r has g i v e n them. Do you b e l i e v e t h a t your d i a g n o s i s i s c o r r e c t ? (a) s t r o n g l y agree (b) agree (c) I don't know (d) disagree 112 (e) s t r o n g l y d i s a g r e e For respondents with o s t e o a r t h r i t i s , s k i p to Q.5 (3) Is your a r t h r i t i s c u r r e n t l y a c t i v e ? (a) yes (b) no i f a, s k i p to Q. 5 i f b, (4) Do you think i t i s l i k e l y that your a r t h r i t i s w i l l f l a r e up again i n the futur e ? (a) s t r o n g l y agree (b) agree (c) I don't know (d) d i s a g r e e (e) s t r o n g l y d i s a g r e e (5) How long ago were you diagnosed as having t h i s type of a r t h r i t i s ? (a) l e s s than 1 year (b) 1 - 5 years (c) 5 - 10 years (d) more than 10 years (e) I don't know The f o l l o w i n g statements r e f e r to v a r i o u s thoughts and f e e l i n g s you may have about your a r t h r i t i s and your home e x e r c i s e program. For each statement l e t me know the extent to which you agree or disagree with the statement. Remember that these are your p e r s o n a l b e l i e f s , and that there are no 113 r i g h t or wrong answers. ( 6 ) I b e l i e v e I w i l l a l w a y s n e e d t o do my home e x e r c i s e s . (a) s t r o n g l y agree (b) agree (c) I don't know (d) d i s a g r e e (e) s t r o n g l y disagree (7) My e x e r c i s e s do not make me f e e l b e t t e r (a) s t r o n g l y agree (b) agree (c) I don't know (d) d i s a g r e e (e) s t r o n g l y disagree (8) Doing my e x e r c i s e s i n t e r f e r e s with my normal d a i l y work a c t i v i t i e s (a) s t r o n g l y agree (b) agree (c) I don't know (d) d i s a g r e e (e) s t r o n g l y disagree (9) I t has not been d i f f i c u l t f o l l o w i n g the e x e r c i s e program that was given to me (a) s t r o n g l y agree (b) agree 114 (c) I don't know (d) disagree (e) s t r o n g l y d i s a g r e e (10) I b e l i e v e that my e x e r c i s e s w i l l c o n t r o l my a r t h r i t i s (a) s t r o n g l y agree (b) agree (c) I don't know (d) disagree (e) s t r o n g l y d i s a g r e e (11) My a r t h r i t i s w i l l cause me many problems i n the f u t u r e (a) s t r o n g l y agree (b) agree (c) I don't know (d) d i s a g r e e (e) s t r o n g l y d i s a g r e e (12) Doing e x e r c i s e s i s something I must do no matter how hard i t i s (a) s t r o n g l y agree (b) agree (c) I don't know (d) disagree (e) s t r o n g l y d i s a g r e e (13) I t takes a l o t of e f f o r t to do these e x e r c i s e s (a) s t r o n g l y agree (b) agree (c) I don't know 115 (d) d i s a g r e e (e) s t r o n g l y d i s a g r e e (14) I would have to change too many h a b i t s to f o l l o w the e x e r c i s e program which was giv e n to me (a) s t r o n g l y agree (b) agree (c) I don't know (d) disagree (e) s t r o n g l y d i s a g r e e (15) My a r t h r i t i s w i l l cause me to be s i c k a l o t (a) s t r o n g l y agree (b) agree (c) I don't know (d) d i s a g r e e (e) s t r o n g l y d i s a g r e e (16) In g e n e r a l , the home e x e r c i s e s have helped my a r t h r i t i s (a) s t r o n g l y agree (b) agree (c) I don't know (d) d i s a g r e e (e) s t r o n g l y d i s a g r e e (17) I worry when I think about how bad my a r t h r i t i s may get i n the f u t u r e (a) s t r o n g l y agree (b) agree ( c ) I don't know 116 (d) d i s a g r e e (e) s t r o n g l y d i s a g r e e (18) What do you think has caused your a r t h r i t i s ? (19) Why do you think that was the cause? (20) Why do you think your i l l n e s s s t a r t e d when i t d i d ? (21) How would you r a t e the s e v e r i t y of your a r t h r i t i s a t t h i s p o i n t i n time (a) 1 - no e f f e c t , whatsoever (b) 2 (c) 3 - minimal (d) 4 (e) 5 - average (f) 6 (g) 7 - severe (h) 8 ( i ) 9 - very severe (22) How much longer do you think your a r t h r i t i s i s going to l a s t ? (a) the r e s t of your l i f e (b) more than 5 years (c) 1 - 5 years (d) 6 months to 1 year (e) l e s s than 6 months (f) I don't know (23) Up to t h i s p o i n t i n time how much of an impact has your a r t h r i t i s had on your l i f e 117 (a) no impact (b) minimal impact (c) I don't know (d) moderate impact (e) great impact (24) B e f o r e going to the A r t h r i t i s S o c i e t y d i d you r e c e i v e any treatments f o r the a r t h r i t i s (a) yes (b) no i f no, s k i p to Q. 27 i f yes, (25) To what extent were these treatments e f f e c t i v e i n c o n t r o l l i n g your symptoms? (a) very e f f e c t i v e (b) e f f e c t i v e (c) I don't know (d) m i n i m a l l y i n e f f e c t i v e (e) t o t a l l y i n e f f e c t i v e (26) What type of treatments d i d you r e c e i v e before going t o the A r t h r i t i s S o c i e t y ? (27) What type of treatments were you hoping to get? (28) What d i d you want t h i s treatment to accomplish? (29) Did you r e c e i v e the type of treatments you were hoping to get? (a) yes (b) no 118 (30) Do you f e e l t h a t treatments from the A r t h r i t i s S o c i e t y can help to cure you a r t h r i t i s ? (a) s t r o n g l y d i s agree (b) d i s a g r e e (c) I don't know (d) agree (e) s t r o n g l y agree (31) Do you f e e l that treatments from the A r t h r i t i s S o c i e t y can help to c o n t r o l your a r t h r i t i s ? (a) s t r o n g l y d i s agree (b) d i s a g r e e (c) I don't know (d) agree (e) s t r o n g l y agree (32) To what e x t e n t have you b e e n s a t i s f i e d w i t h t h e e f f e c t i v e n e s s of the treatments you have r e c e i v e d from the A r t h r i t i s S o c i e t y ? (a) very s a t i s f i e d (b) mostly s a t i s f i e d (c) i n d i f f e r e n t or unsure (d) m i l d l y d i s s a t i s f i e d (e) mostly d i s s a t i s f i e d A v a r i e t y of reasons are o f t e n g i v e n as to why people are not happy with t h e i r home e x e r c i s e program. I n d i c a t e the extent to which each of the f o l l o w i n g apply to you. ( 3 3 ) treatment was uncomfortable or p a i n f u l (a) s t r o n g l y agree (b) agree (c) i n d i f f e r e n t or unsure (d) d i s a g r e e (e) s t r o n g l y d i s a g r e e (34) treatment was too i n v o l v e d (a) s t r o n g l y agree (b) agree (c) i n d i f f e r e n t or unsure (d) d i s a g r e e (e) s t r o n g l y d i s a g r e e (35) treatment made me f e e l worse afterwards (a) s t r o n g l y agree (b) agree (c) i n d i f f e r e n t or unsure (d) d i s a g r e e (e) s t r o n g l y d i s a g r e e (36) treatments r e q u i r e d too l a r g e of a change i n my l i f e (a) s t r o n g l y agree (b) agree (c) i n d i f f e r e n t or unsure (d) d i s a g r e e (e) s t r o n g l y d i s a g r e e (37) treatment was going to l a s t too long (a) s t r o n g l y agree (b) agree 120 (c) i n d i f f e r e n t or unsure (d) d i s a g r e e (e) s t r o n g l y disagree (38) treatment d i d not seem e f f e c t i v e (a) s t r o n g l y agree (b) agree (c) i n d i f f e r e n t or unsure (d) d i s a g r e e (e) s t r o n g l y disagree (39) o t h e r , please i n d i c a t e Following the recommendations of one's p h y s i o t h e r a p i s t i s not always easy, and thus some p e o p l e f i n d i t d i f f i c u l t t o do t h e i r home e x e r c i s e s e x a c t l y as they were taught. (40) What e x e r c i s e s d i d your p h y s i o t h e r a p i s t suggest that you do as pa r t of your home e x e r c i s e program? (41) How o f t e n do you do each of these e x e r c i s e s ? (a) more than once d a i l y (b) d a i l y (c) 5 - 6 times/week (d) 2 - 4 times/week (e) weekly (f) l e s s than weekly (42) How o f t e n d i d the p h y s i o t h e r a p i s t recommend that you do your e x e r c i s e s ? (a) more than once d a i l y (b) d a i l y 121 • ( c ) 5 - 6 times/week (d) 2 - 4 times/week (e) weekly (f) l e s s than weekly (43) Are you doing your e x e r c i s e s e x a c t l y as you were taught by the p h y s i o t h e r a p i s t ? (a) yes (b) no (44) What changes have you made? (45) Why d i d you make these changes? (46) What were t h e r e a c t i o n s o f f a m i l y members t o t h e treatments recommended by the p h y s i o t h e r a p i s t s ? (a) very s a t i s f i e d (b) mostly s a t i s f i e d (c) i n d i f f e r e n t (d) m i l d l y d i s s a t i s f i e d - (e) q u i t e d i s s a t i s f i e d (47) What were the r e a c t i o n s of f r i e n d s to the treatments recommended by the p h y s i o t h e r a p i s t ? (a) very s a t i s f i e d (b) mostly s a t i s f i e d (c) i n d i f f e r e n t (d) m i l d l y d i s s a t i s f i e d (e) q u i t e d i s s a t i s f i e d (48) What advice d i d they g i v e you about the e x e r c i s e s ? (49) Many peo p l e o f t e n t r y o t h e r types of treatment o t h e r 122 than what i s recommended i n the hopes of f i n d i n g a cure f o r t h e i r d i s e a s e . How many a l t e r n a t e t h e r a p i e s or treatments have you t r i e d ? (a) more than 4 (b) 3 - 4 (c) 1 - 2 (d) none i f d, s k i p to Q. 51 i f a - c (50) What other types of treatment have you t r i e d ? (51) What i s your c u r r e n t l i v i n g s i t u a t i o n ? (a) l i v i n g alone (b) l i v i n g with a partner (c) l i v i n g with c h i l d r e n (d) l i v i n g with other f a m i l y (e) l i v i n g with f r i e n d s (f ) l i v i n g with other than f a m i l y or f r i e n d s (52) What i s your m a r i t a l s t a t u s at t h i s time? (a) married (b) commonlaw (c) d i v o r c e d (d) separated (e) widowed (f) never married (53) What i s your e t h n i c o r i g i n ? i f one country given, s k i p to Q. 55 123 i f two or more c o u n t r i e s , (54) Which one of these c o u n t r i e s do you most i d e n t i f y with? (55) What i s the highest l e v e l of education you have f i n i s h e d and r e c e i v e d c r e d i t f o r ? (a) p r o f e s s i o n a l or graduate school (b) completed u n i v e r s i t y or c o l l e g e (c) some u n i v e r s i t y or c o l l e g e (d) completed high s c h o o l (e) some high school (f ) l e s s than 9 years of school (56) What i s your a p p r o x i m a t e p e r s o n a l income f r o m a l l sources l a s t year (a) under 10,000 (b) 10,000 - 14,999 (c) 15,000 - 19,999 (d) 20,000 - 24,999 (e) more than 25,000 (57) What i s your approximate f a m i l y income from a l l sources l a s t year? (a) under 10,000 (b) 10,000 - 19,999 (c) 20,000 - 29,999 (d) 30,000 - 39,999 (e) more than 40,000 (58) What i s your employment s t a t u s ? (a) employed, f u l l time 124 (b) employed, p a r t time (c) unemployed (d) r e c e i v i n g a d i s a b i l i t y pension (e) student (f) r e t i r e d I w i l l read 20 statements that d e s c r i b e d i f f e r e n t ways we see o u r s e l v e s , and our problems. For each statement p l e a s e t e l l me how w e l l i t d e s c r i b e s the way you g e n e r a l l y f e e l when you f a c e problems i n your l i f e . There a r e no r i g h t or wrong answers. Each person d e a l s with problems i n d i f f e r e n t ways. In g e n e r a l , how w e l l d o e s e a c h o f t h e f o l l o w i n g f o u r s t a t e m e n t s d e s c r i b e how you see t h e s i t u a t i o n you f i n d y o u r s e l f i n when you are confronted with a problem (59) I b r i n g the problems upon m y s e l f . My problems are my f a u l t . The o n l y person who can s o l v e the problems I have i s me. I a l o n e am r e s p o n s i b l e f o r f i n d i n g a s o l u t i o n to my problems by f a c i n g them head on. (a) 1 - not at a l l (b) 2 (c) 3 - a l i t t l e b i t (d) 4 (e) 5 - moderately •(f) 6 (g) 7 - very much (60) My problems are not my f a u l t . I have no c o n t r o l over 125 the cause of my problems. I a l s o can do nothing about s o l v i n g them. I am dependent on o t h e r s to s o l v e them f o r me. (a) 1 - not at a l l (b) 2 (c) 3 - a l i t t l e b i t (d) 4 (e) 5 - moderately • ( f ) 6 (g) 7 - very much (61) My problems are not my f a u l t . I am an innocent v i c t i m of c i r c u m s t a n c e s , but I do p l a y an important r o l e i n s o l v i n g my p r o b l e m s . I can s o l v e the problems f o r m y s e l f i f o t h e r p e o p l e work w i t h me and g i v e me a chance. (a) 1 - not at a l l (b) 2 (c) 3 - a l i t t l e b i t (d) 4 (e) 5 - moderately (f ) 6 (g) 7 - very much (62) My problems are my own f a u l t . They are due to my own i n a b i l i t y t o c o n t r o l m y s e l f . I c a n n o t s o l v e t h e problems by myself. I need to devote myself to some higher g o a l or a u t h o r i t y to f i n d a s o l u t i o n and get the 126 support I need (a) 1 - not at a l l (b) 2 (c) 3 - a l i t t l e b i t (d) 4 (e) 5 - moderately (f) 6 (g) 7 - very much In g e n e r a l , how w e l l d o e s e a c h o f t h e f o l l o w i n g f o u r statements d e s c r i b e what k i n d of person you are when you f a c e a problem. (63) Lazy and stubborn. Someone who i s sometimes i n f l e x i b l e and p i g - h e a d e d but b a s i c a l l y a s t r o n g person who can face problems head on by myself (a) 1 - not at a l l (b) 2 (c) 3 - a l i t t l e b i t (d) 4 (e) 5 - moderately (f ) 6 (g) 7 - very much (64) A weak person. Someone who i s h e l p l e s s and p a s s i v e and o f t e n i l l . One who i s not to be blamed f o r my problems. Someone who o f t e n f i n d s o n e s e l f dependent on others f o r many th i n g s (a) 1 - not at a l l 127 (b) 2 (c) 3 - a l i t t l e b i t (d) 4 (e) 5 - moderately (f ) 6 (g) 7 - very much (65) An i n n o c e n t v i c t i m . Someone who i s b a s i c a l l y a good person but has. been given a raw d e a l , or j u s t not g i v e n the o p p o r t u n i t y to develop one's s t r e n g t h s . Someone who can l e a r n and grow i f others gave me a chance and worked with me. (a) 1 - not at a l l (b) 2 (c) 3 - a l i t t l e b i t (d) 4 (e) 5 - moderately (f ) 6 (g) 7 - very much (66) A bad p e r s o n . Someone who f e e l s o u t o f c o n t r o l . Someone who f e e l s l o s t , alone, and ashamed and i s s e a r c h i n g . Someone who n e e d s t o s u b m i t t o t h e a u t h o r i t y , d i s c i p l i n e , and support of o t h e r s . (a) 1 - not at a l l '(b) 2 (c) 3 - a l i t t l e b i t (d) 4 128 (e) 5 - moderately (f ) 6 (g) 7 - very much In g e n e r a l , how w e l l does e a c h o f t h e f o l l o w i n g f o u r statements d e s c r i b e what you should t y p i c a l l y do to cope with your problems (67) Work harder to s o l v e them. Pick myself up, admit I'm wrong, and get m y s e l f m o t i v a t e d to f a c e the problems head on. U l t i m a t e l y s o l v e the problem f o r myself. Help myself - not r e l y on o t h e r s . (a) 1 - not a t a l l (b) 2 (c) 3 - a l i t t l e b i t (d) 4 (e) 5 — moderately (f ) 6 (g) 7 - very much (68) Depend on others who know what they're doing. Rely on them to do the th i n g s that need to be done. Don't take any chances on my own. Respect what others say and do. L e t o t h e r p e o p l e who know what th e y a r e d o i n g t a k e c o n t r o l . (a) 1 - not at a l l (b) 2 (c) 3 - a l i t t l e b i t (d) 4 129 (e) 5 - moderately .(f) 6 (g) 7 - very much (69) Work w i t h o t h e r s t o f i n d a s o l u t i o n . Use the chances o t h e r s g i v e me t o t h e f u l l e s t . D e v e l o p my own competence and p o t e n t i a l s . Be s e r i o u s i n f i n d i n g a s o l u t i o n . Stand up f o r what i s r i g h t f u l l y mine. (a) 1 - not at a l l (b) 2 (c) 3 - a l i t t l e b i t • ( d ) 4 (e) 5 - moderately (f ) 6 (70) Submit to the support and d i s c i p l i n e of o t h e r s . Develop a sense of belonging with others i n the same boat as me. Admit that I'm bad and devote myself to something l a r g e r than me and my s e l f i s h d e s i r e s . (a) 1 - not at a l l (b) 2 (c) 3 - a l i t t l e b i t (d) 4 (e) 5 - moderately (f) 6 (g) 7 - very much In g e n e r a l , how w e l l d o e s e a c h o f t h e f o l l o w i n g f o u r statements d e s c r i b e what other people should do to help you to 130 cope with your problems. (71) Encourage and motivate me towards f i n d i n g a s o l u t i o n f o r myself. G i v i n g me a good k i c k i n the pants to get me g o i n g . G i v e me a pat on the shoulder f o r a "job w e l l done". (a) 1 - not at a l l (b) 2 (c) 3 - a l i t t l e b i t (d) 4 (e) 5 - moderately (f ) 6 (g) 7 - very much (72) Doing t h i n g s f o r me t h a t need t o be done. A c t i v e l y s o l v i n g t h e p r o b l e m f o r me and make me f e e l more comfortable. Taking charge of g e t t i n g me out of the problem. Not blaming me f o r my l i m i t a t i o n s or e x p e c t i n g me to do what I can't do. (a) 1 - not at a l l (b) 2 (c) 3 - a l i t t l e b i t (d) 4 (e) 5 - moderately (f) 6 (g) 7 - very much (73) Understanding where I'm coming from and be aware of the a b i l i t i e s I have. G i v i n g me a chance to s o l v e the 131 problems myself. P l a c i n g themselves at my s e r v i c e so I can develop my p o t e n t i a l s . Teach me new s k i l l s that I c o u l d use i n f i n d i n g a s o l u t i o n myself. (a) 1 - not a t a l l (b) 2 (c) 3 - a l i t t l e b i t (d) 4 (e) 5 - moderately (f ) 6 (g) 7 - very much (74) Being there and making me f e e l that I'm not alone but f o r c i n g me to see myself as I r e a l l y am, a g u i l t y person who i s out of c o n t r o l . Shares with me the t r u e way-the r e a l i z a t i o n that there are more important t h i n g s i n l i f e b e sides my s e l f i s h d e s i r e s , and that my submission and obedience to higher i d e a l s i s necessary to c o n t r o l the problems I am g u i l t y o f . (a) 1 - not at a l l (b) 2 (c) 3 - a l i t t l e b i t (d) 4 (e) 5 - moderately (f) 6 (g) 7 - very much In g e n e r a l , how w e l l d o e s e a c h o f t h e f o l l o w i n g f o u r statements d e s c r i b e the b a s i c s t r e n g t h s you must have to cope 132 with your problems. (75) Having a sense of p r i d e and being a m b i t i o u s . Someone who i s n ' t dependent on o t h e r s . F e e l i n g l i k e a person of value and worth. Being s e l f - a s s u r e d , hard-working, and able to s o l v e a problem by myself without o t h e r s . (a) 1 - not at a l l (b) 2 (c) 3 - a l i t t l e b i t (d) 4 (e) 5 - moderately (f) 6 (g) 7 - very much (76) Being c a r e f u l and not making waves. Being c a u t i o u s and not t a k i n g any r i s k s on my own. A c c e p t i n g the way thi n g s are now and the way they w i l l be. L e t t i n g o t h e r s do what has to be done. (a) 1 - not at a l l (b) 2 (c) 3 - a l i t t l e b i t (d) 4 (e) 5 - moderately (f) 6 (g) 7 - very much (77) E f f e c t i v e l y using the chances other people g i v e me. Working w e l l with o t h e r s . Learning and using what they have to o f f e r so I can develop and work out a s o l u t i o n 133 to my problems. F e e l i n g competent and knowing I can achieve i f I am onl y g i v e n a chance. (a) 1 - not at a l l (b) 2 (c) 3 - a l i t t l e b i t (d) 4 (e) 5 - moderately ( f ) 6 • (g) 7 - very much (78) Being able to accept support and d i s c i p l i n e from o t h e r s so I can t a k e t h e r i g h t p a t h . A c c e p t i n g my g u i l t y n a t u r e and not b e i n g a f r a i d t o d e d i c a t e m y s e l f t o something l a r g e r than me. Being able to i d e n t i f y with o t h e r s who need the same d i r e c t i o n as me. (a) 1 - not at a l l (b) 2 (c) 3 - a l i t t l e b i t (d) 4 (e) 5 - moderately (f ) 6 (g) 7 - very much The next set of ques t i o n s r e f e r to your thoughts and f e e l i n g s about your most recent p h y s i o t h e r a p i s t . (79) I f e e l the p h y s i o t h e r a p i s t d i d not spend enough time with me (a) s t r o n g l y agree 134 (b) agree (c) i n d i f f e r e n t or unsure (d) d i s a g r e e (e) s t r o n g l y d i s a g r e e (80) The p h y s i o t h e r a p i s t e x p l a i n e d p e r f e c t l y to me e v e r y t h i n g I could ever want to know about my medical c o n d i t i o n (a) s t r o n g l y agree (b) agree (c) i n d i f f e r e n t or unsure (d) d i s a g r e e (e) s t r o n g l y d i s a g r e e (81) The p h y s i o t h e r a p i s t r e a l l y cared about me as a person. I was not j u s t p a r t of t h e i r job (a) s t r o n g l y agree (b) agree (c) i n d i f f e r e n t or unsure (d) d i s a g r e e (e) s t r o n g l y d i s a g r e e (82) The p h y s i o t h e r a p i s t a c t e d l i k e I d i d n ' t have any f e e l i n g s (a) s t r o n g l y agree (b) agree (c) i n d i f f e r e n t or unsure (d) disagree (e) s t r o n g l y d i s a g r e e (83) The p h y s i o t h e r a p i s t gave me suggestions on what I c o u l d 135 do to manage my a r t h r i t i s b e t t e r (a) s t r o n g l y agree (b) agree (c) i n d i f f e r e n t or unsure (d) d i s a g r e e (e) s t r o n g l y d i s a g r e e (84) The p h y s i o t h e r a p i s t always t r e a t e d me with a great d e a l of r e s p e c t and never " t a l k e d down" to me (a) s t r o n g l y agree (b) agree (c) i n d i f f e r e n t or unsure (d) d i s a g r e e (e) s t r o n g l y d i s a g r e e (85) The p h y s i o t h e r a p i s t always r e l i e v e d my worries about my medical c o n d i t i o n (a) s t r o n g l y agree (b) agree (c) i n d i f f e r e n t or unsure (d) d i s a g r e e (e) s t r o n g l y d i s a g r e e (86) During therapy, the p h y s i o t h e r a p i s t h a r d l y ever t o l d me what she was doing (a) s t r o n g l y agree (b) agree (c) i n d i f f e r e n t or unsure (d) d i s a g r e e 136 (e) s t r o n g l y d i s a g r e e (87) The p h y s i o t h e r a p i s t d i d not g i v e me a chance to say what was on my mind (a) s t r o n g l y agree (b) agree '(c) i n d i f f e r e n t or unsure (d) d i s a g r e e (e) s t r o n g l y d i s a g r e e (88) The p h y s i o t h e r a p i s t d i d not act l i k e I'm important as a person (a) s t r o n g l y agree (b) agree (c) i n d i f f e r e n t or unsure (d) d i s a g r e e (e) s t r o n g l y d i s a g r e e (89) The p h y s i o t h e r a p i s t always seemed to know what she was doing (a) s t r o n g l y agree (b) agree (c) i n d i f f e r e n t or unsure (d) d i s a g r e e (e) s t r o n g l y d i s a g r e e (90) I have a great d e a l of confidence i n the p h y s i o t h e r a p i s t (a) s t r o n g l y agree (b) agree (c) i n d i f f e r e n t or unsure 137 • (&) d i s a g r e e (e) s t r o n g l y d i s a g r e e (91) I f e e l the p h y s i o t h e r a p i s t d i d not take ray problems very s e r i o u s l y (a) s t r o n g l y agree (b) agree (c) i n d i f f e r e n t or unsure (d) d i s a g r e e (e) s t r o n g l y d i s a g r e e (92) The p h y s i o t h e r a p i s t always l i s t e n e d to e v e r y t h i n g I had to say (a) s t r o n g l y agree (b) agree (c) i n d i f f e r e n t or unsure (d) d i s a g r e e (e) s t r o n g l y d i s a g r e e (93) The p h y s i o t h e r a p i s t d i d not t e l l me very much about her plans f o r me (a) s t r o n g l y agree (b) agree (c) i n d i f f e r e n t or unsure (d) d i s a g r e e (e) s t r o n g l y d i s a g r e e (94) The p h y s i o t h e r a p i s t was always very kind and c o n s i d e r a t e of my f e e l i n g s (a) s t r o n g l y agree 138 (b) agree (c) i n d i f f e r e n t or unsure (d) d i s a g r e e (e) s t r o n g l y disagree (95) When the p h y s i o t h e r a p i s t gave me the e x e r c i s e s to do at home, she d i d not t e l l me as much as I would l i k e t o know about them (a) s t r o n g l y agree (b) agree (c) i n d i f f e r e n t or unsure (d) d i s a g r e e (e) s t r o n g l y disagree (96) The p h y s i o t h e r a p i s t u s u a l l y d i d not t r y to make me f e e l b e t t e r when I was upset or worried (a) s t r o n g l y agree (b) agree (c) i n d i f f e r e n t or unsure (d) d i s a g r e e (e) s t r o n g l y disagree (97) I h a v e some d o u b t s a b o u t t h e a b i l i t y o f t h e p h y s i o t h e r a p i s t (a) s t r o n g l y agree (b) agree (c) i n d i f f e r e n t or unsure (d) d i s a g r e e (e) s t r o n g l y disagree 139 The next s e t of 7 q u e s t i o n s a l s o r e f e r to your e x p e r i e n c e s with your l a s t p h y s i o t h e r a p i s t . (98) How would you r a t e the q u a l i t y of the s e r v i c e you have received? (a) e x c e l l e n t (b) good (c) f a i r (d) poor (99) Did you get the kind of s e r v i c e you wanted? (a) no, d e f i n i t e l y not (b) no, not r e a l l y (c) yes, g e n e r a l l y (d) yes, d e f i n i t e l y (100) To what extent d i d the physiotherapy program meet your needs? (a) almost a l l my needs have been met (b) most of my needs have been met (c) only a few of my needs have been met (d) none of my needs have been met (101) I f a f r i e n d were i n need of s i m i l a r help, would you recommend your p h y s i o t h e r a p i s t to him or her? (a) no, d e f i n i t e l y not (b) no, I don't thi n k so (c) yes, I think so (d) yes, d e f i n i t e l y (102) How s a t i s f i e d are you with the amount of help you have 140 received? (a) q u i t e d i s s a t i s f i e d (b) i n d i f f e r e n t or m i l d l y d i s s a t i s f i e d (c) mostly s a t i s f i e d (d) very s a t i s f i e d (103) Did the s e r v i c e s you r e c e i v e d h e l p you to de a l more e f f e c t i v e l y with your problems? (a) yes, they helped a great d e a l (b) yes, they helped somewhat (c) no, they r e a l l y d i d n ' t h e l p (d) no, they seemed to make t h i n g s worse (104) In an o v e r a l l , g e n e r a l sense, how s a t i s f i e d were you with the s e r v i c e you rec e i v e d ? (a) very s a t i s f i e d (b) mostly s a t i s f i e d (c) i n d i f f e r e n t or m i l d l y d i s s a t i s f i e d (d) q u i t e d i s s a t i s f i e d (105) In r e f e r e n c e to the whole i n t e r v i e w , are there any questions which made you f e e l uncomfortable? E x p l a i n . 141 APPENDIX 2 Sample Interview Tape Transcript I What do you think has caused your a n k y l o s i n g s p o n d y l i t i s ? R What I know of a n k y l o s i n g s p o n d y l i t i s i s j u s t t h a t i t i s to some degree h e r e d i t a r y p o s s i b l y , and other than that I don't know what i t i s . I went f o r ten yea r s , going t o c h i r o p r a c t o r s and s t u f f l i k e that before I ever knew what i t was. So i t ' s a b i g r e l i e f to know what i t i s . I In your view, how do you think h e r e d i t y i s a cause? R I'm not even p o s i t i v e a b o u t t h a t . I t h i n k I r e a d something about t h a t . I read a f a i r b i t about i t when I was f i r s t diagnosed, and then I r e a l l y haven't kept up on i t so much. So I'm a b i t foggy about what i t i s . I b e l i e v e there i s some l i n k , I can't even remember, but my mother has had back p a i n . But then they say that a n k y l o s i n g s p o n d y l i t i s has mainly 90% male t a r g e t groups. I don't know i f she s u f f e r s from i t or what. She's had other k i n d s of back t r o u b l e a l l her l i f e . I t ' s i n the back of my mind. I Evidence that i t might be h e r e d i t y ! R She l i v e s up near ? . I don't see her very much. She's never f o l l o w e d through on why she's had that p a i n . She's one of those people who doesn't seek out answers. I tend to be t h a t way, or up u n t i l t h i s p o i n t I was anyway. O b v i o u s l y f o r ten y e a r s with having t h i s p a i n and not 142 knowing what was causing i t . I Do you have any idea why i t might have happened when i t d i d happen? Why i t di d n ' t a f f e c t you f i v e years b e f o r e , or why i t d i d n ' t wait f o r f i v e years from now. R When I f i r s t s t a r t e d having, when I found out i t was ank y l o s i n g s p o n d y l i t i s i t was very apparent because they s a i d that the age at which i t u s u a l l y comes out i s around e i g h t e e n or n i n e t e e n , and t h a t ' s e x a c t l y when I f i r s t s t a r t e d h a v i n g problems. But you see, when I s t a r t e d h a v i ng problems I had j u s t moved to Toronto about t h a t time, and I thought i t was humidity r e l a t e d . In f a c t , i n the back of my mind I was j u s t t h i n k i n g , 'well I don't know'. I never even pursued i t as being a r t h r i t i s . I j u s t went t o t h e c h i r o p r a c t o r ' s and t h e y f i x e d i t t e m p o r a r i l y , and then i t would get bad a g a i n . I kept t h i s up f o r a long time. I There was n o t h i n g r e a l l y g o i ng on i n your l i f e a t the time which you thi n k might have c o n t r i b u t e d to i t a l l ? R No, i t j u s t came on r e a l l y out of nowhere. I t was so v e r y r a p i d when I s t a r t e d h a v ing p a i n i n a v e r y s h o r t time. I You s a i d that you have to d e a l with your own m o t i v a t i o n , and a t t a c h i n g cause to e f f e c t . What e x a c t l y , can you e x p l a i n that a l i t t l e b i t . R What I was, when I f i r s t s t a r t e d d o ing the e x e r c i s e s I had r e a l l y marked r e s u l t s . I t r e a l l y f e l t good and e v e r y t h i n g . And you see at the same time I d i d t h a t , I got i n t o q u i t e a whole self-improvement t h i n g . I l o s t weight and a l l t h i s . I had always been overweight a l l my l i f e . You sound l i k e you were r e a l l y motivated! I got very motivated. The two s o r t of went hand-in-hand you know. I got i n t o r e a l l y , uh, you know, not i n t o l i k e t o t a l p h y s i c a l f i t n e s s or anything l i k e t h a t , but I l o s t weight and that helps the back problem too. There was d e f i n i t e l y a c o r r e l a t i o n there, but I l e t t h a t , I'm one of t h o s e p e o p l e who l e t s t h i n g s l i k e t h a t s l i d e . You know I've l e t the weight s l i d e back t o almost where i t was. Now I've j u s t got back on an upsurge of m o t i v a t i o n . But as f a r as the e x e r c i s e s , what happened was that I had such good r e s u l t s . I t took a long time. L i k e i t ' s been about a year o f doing them every s o r t of now and then. Sort of when I think of them, and s o r t of slap-dash way of doing them. Rather than, you know, a l l the time. I don't t h i n k i n terms of p r e v e n t i v e medicine. Okay, so i t sounds l i k e once they were so e f f e c t i v e the pain went away. So t h e r e f o r e the p a i n wasn't -I g r a d u a l l y s t a r t e d d e c r e a s i n g them and then I f o r g o t about them a l t o g e t h e r . I t ' s s o r t of l i k e , l i k e i t ' s coming back to me i n spades a l l of a sudden. Two weeks ago I j u s t had the worst onset of pa i n ever. Prolonged, and you know I j u s t went, ' t h i s i s r i d i c u l o u s , I got to 144 get on to t h i s and stay on i t ' . That i s t y p i c a l of what I do, so t h a t ' s the angle of what I have to d e a l with. I t ' s t h i n k i n g every day I get up, cause I work evenings and n i g h t s i n the clu b s and s t u f f . I come home. I s l e e p i n . I get up. I tend to get up and go out and do s t u f f t h a t I have to do. I'm now t r y i n g to set a s i d e an hour where I can get up. R e a l l y wake up p r o p e r l y . F e e l l i k e i t , and then set a s i d e h a l f and hour to go do i t . Do you think there i s anything about the e x e r c i s e program th a t they gave you that c o u l d have been d i f f e r e n t ? That would have made i t e a s i e r f o r you to keep at i t ? Not r e a l l y , no. I, they're very simple. I haven't even l o o k e d a t the c h a r t of them i n a year or two. I have them a l l memorized. Even a c e r t a i n sequence that I l i k e t o do them i n . I t ' s q u i t e easy to memorize. Even though I haven't done them t h a t much I know. them. In f a c t I j u s t looked at the cha r t the other day to make sure there wasn't any I f o r g o t , and I was doing a l l of them. The program i t s e l f i s quite, adequate I t h i n k . I t ' s me t h a t ' s the screw-up ( l a u g h s ) . One t h i n g I've s t a r t e d doing j u s t r e c e n t l y t hat helps my m o t i v a t i o n i s that I put on some music when I'm doing i t , so i t ' s not n e a r l y so b o r i n g to be doing them. I t s o r t of d i s t r a c t s the mind from the mechanics, the r e p e t i t i o n of doing i t . Are you doing the e x e r c i s e s e x a c t l y as you were taught by the p h y s i o t h e r a p i s t ? R I'm not s u r e . I don't r e c a l l . I reviewed them on the c h a r t and with a couple of minor v a r i a t i o n s . I Can you t h i n k of any changes you have made to them? R No, not r e a l l y o f f the top of my head. I I t sounds l i k e you r e a l l y haven't made too much i n the way of changes. R No, they're a l l p r e t t y s t r a i g h t forward. I The sense I'm g e t t i n g from you i s that you were q u i t e s a t i s f i e d with the help you got t h e r e , but that once you found that the e x e r c i s e s were r e a l l y q u i t e e f f e c t i v e , the p a i n was going away, and you had more f l e x i b i l i t y , t h a t i t d i d n ' t become as important f o r you to do them. There was n o t h i n g t h a t was pushing you to do them. Is there a n y t h i n g t h a t c o u l d have been done here that might have prevented that somehow? R Let me j u s t t h i n k f o r a second. As I r e c a l l , I'm sure that I was t o l d that i t would reoccur i f I d i d n ' t keep i t up. Again, whose job i s i t to be f i r e and brimstone with somebody. I th i n k I must have understood what happened. But I'm l i k e that with t h i n g s i n g e n e r a l , so I couldn't v i s u a l i z e anything that they could do to change me from b e i n g t h a t way. T h e y c a n ' t t e l l t h a t I'm v e r y l a c k a d a i s i c a l about those k i n d of t h i n g s . P o s s i b l y one t h i n g I do with weight c o n t r o l , t h i s i s my own l i t t l e p e r s o n a l r e g i m e n t a t i o n , i s that I p r i n t up l i t t l e d a i l y forms t o f o l l o w a c e r t a i n d i e t or do weight c o n t r o l 146 ' e x e r c i s e s or th i n g s l i k e t h a t . And I'm t h i n k i n g of maybe, even making a c h e c k l i s t and p r i n t i n g i t . You see I j u s t run i t o f f on my computer, p r i n t them up. And that way I have a l i t t l e c l i p b o a r d t h e r e . I t ' s s i t t i n g t h e r e . I t ' s l i k e a v i s u a l reminder f o r me. 'Hey, t h i s t h i n g s blank, you haven't done anyth i n g ' . I I t ' s a l i t t l e l i k e a conscience. R E x a c t l y , t h a t ' s e x a c t l y i t . That's one t h i n g I've come up w i t h . I think I'm going to apply i t to the a r t h r i t i s e x e r c i s e s . Any l i t t l e v i s u a l cue l i k e t h a t . That's the only t h i n g that I can think of that works f o r me because i t d e f i n i t e l y prods the o l d g u i l t . F i n d i n g the time to do i t . I'm one of the most u n s t r u c t u r e d people i n the world as f a r as my own time. I've got to do whatever comes i n my head to do. I u s u a l l y get up and there i s s e v e r a l t h i n g s I have to do, but I can do them i n any, i t ' s l i k e s h u f f l i n g c a r d s , i n any order. I have to j u s t put t h i s c a r d f i r s t everyday. 147 APPENDIX 3 A n a l y s i s u s i n g A r t h r i t i s S o c i e t y c a t e g o r i z a t i o r v  of a c h r o n i c nonadherent group Demographic F a c t o r s Table 15 i l l u s t r a t e s the breakdown of p a t i e n t demographic c h a r a c t e r i s t i c s a c c o r d i n g t o c h r o n i c nonadherent group and comparison group comparisons. I n s e r t Table 15 about here With regard to age, the c h r o n i c nonadherent group tended to be younger than the comparison group. Thus, 62.5% of the c h r o n i c n o n a d h e r e n t group i s under the median age of 46, whereas o n l y 28.6% of the comparison group f a l l s under the median. There i s a l s o a tendency f o r a l a r g e r percentage of the c h r o n i c nonadherents to be l i v i n g alone as compared to the comparison group. Looking a t the m a r i t a l s t a t u s , i t can be seen that the c h r o n i c nonadherent group i s much l e s s i n c l i n e d to be married (12.5%) than the comparison group (85.7%). With regard to education, the c h r o n i c nonadherent group has a much hi g h e r percentage of members with a high s c h o o l e d u c a t i o n or l e s s . Thus, 62.5% of the c h r o n i c nonadherent group have a h i g h s c h o o l e d u c a t i o n or l e s s , w h i l e o n l y 14.3% of the comparison group have been s i m i l a r l y e d u c a t e d . T h i s same trend holds f o r income and employment. Members of the c h r o n i c 148 Table 15 C r o s s - T a b u l a t i o n s : P a t i e n t Demographic C h a r a c t e r i s t i c s by  A r t h r i t i s S o c i e t y C a t e g o r i z a t i o n Demographic Chronic Comparison C h a r a c t e r i s t i c s Nonadherent Group Group No. a "6 No. % n : = 8 n = = 7 Age (Mdn - 46) Under 46 years 5 62.5 2 28.6 46 years and o l d e r 3 37.5 5 71.4 L i v i n g S i t u a t i o n alone 4 50.0 2 28.6 other 4 50.0 5 71.4 M a r i t a l Status married 1 12.5 6 85.7 other 7 87.5 1 14.3 Education high school or l e s s 5 62.5 1 14.3 post-high school 3 37.5 6 85.7 ( t a b l e continues) 149 Demographic Chronic Comparison C h a r a c t e r i s t i c s Nonadherent Group Group No. % No. % n = 8 n = 7 Income <20,000 7 100.0 2 28.6 20,000 or above 0 0.0 5 71.4 Employment employed 2 25.0 5 71.4 other 6 75.0 2 28.6 150 nonadherent group tend to r e c e i v e lower incomes, and to not be employed. Thus, 100% of the c h r o n i c nonadherent group a r e r e c e i v i n g incomes of l e s s than $20,000, whereas on l y 28.6% of th e c o m p a r i s o n g r o u p a r e i n t h e same income c a t e g o r y . L i k e w i s e , 25% of the ch r o n i c nonadherent group are employed, while 71.4% of the comparison group are i n a s i m i l a r p o s i t i o n . From these f i n d i n g s i t can be seen that a member of the chr o n i c nonadherent group i s more l i k e l y to be younger, l i v i n g alone, and not married. T h i s person w i l l a l s o tend to have a lower educ a t i o n , a lower income, and to not be employed. The H e a l t h B e l i e f s Model One dimension of the H e a l t h B e l i e f s Model was shown to have a m e a s u r a b l e d i f f e r e n c e between the two groups as a r e s u l t of t - t e s t a n a l y s i s (see Table 16). Ins e r t Table 16 about here C u r i o u s l y enough, the study p o i n t e d t o the f a c t t h a t the c h r o n i c nonadherent group f e l t t h e r e were fewer a s p e c t s o f t h e i r home e x e r c i s e program a c t i n g as b a r r i e r s to e x e r c i s e p e r f o r m a n c e , t h a n d i d the comparison group. T h i s i s odd c o n s i d e r i n g the f a c t t h a t i t was expected t h a t nonadherents would e x p e r i e n c e more r a t h e r than l e s s b a r r i e r s to e x e r c i s e performance than the comparison group. Table 16 T-Test A n a l y s i s of Health B e l i e f s Model by A r t h r i t i s S o c i e t y  C a t e g o r i z a t i o n Perceived B a r r i e r s Mean* SD t 2 - T a i l Prob Chronic Nonadherent Group 9.4 1.3 -1.26 0.228 Comparison Group 10.9 3.0 * Means were o b t a i n e d by f i r s t summing the s c o r e s on the f o u r items r e l a t e d t o p e r c e i v e d b a r r i e r s . The mean thus r e p r e s e n t s the average t o t a l s c o r e of each respondent i n each of the two groups. 152 P a t i e n t ' s Explanatory Model F i n d i n g s were much the same as those which were found when the data was analyzed a c c o r d i n g to s e l f - r e p o r t e d measures of adherence. However, one d i f f e r e n c e was with r e s p e c t to the treatment e x p e c t a t i o n s h e l d by p a t i e n t s . I t was i n t e r e s t i n g to note that the three types of expectations ( e x e r c i s e , other t r e a t m e n t s , and information) were s i m i l a r l y h e l d by both the c h r o n i c n o n a d h e r e n t g r o u p and the comparison group. The s e c o n d d i f f e r e n c e i s t h a t , u n l i k e the f i r s t a n a l y s i s , d i f f e r e n c e s were evident between the c h r o n i c nonadherent group and the comparison group with res p e c t to b e l i e f i n the a b i l i t y o f the A r t h r i t i s S o c i e t y to cure or c o n t r o l t h e i r d i s e a s e . C r o s s - t a b u l a t i o n shows t h a t the comparison group was more l i k e l y to f e e l t h a t a cure was impossible (85.7%) than was the c h r o n i c nonadherent group (50.0%). Some responses which were r e c e i v e d from the c h r o n i c nonadherent group i l l u s t r a t e the hope that these p a t i e n t s had, that the A r t h r i t i s S o c i e t y c o u l d c u r e t h e i r d i s e a s e . For example, one p a t i e n t s a i d t h a t he wanted a cure f o r h i s d i s e a s e , but had no c l u e as to how they would do t h i s . Another p a t i e n t s t a t e d that he wanted to walk r i g h t and be a b l e to r i d e a b i c y c l e a g a i n so t h a t he c o u l d have a normal l i f e . W i t h r e s p e c t t o c o n t r o l , a s i m i l a r breakdown of responses was evident i n both groups. Nature of the I l l n e s s The nature of the i l l n e s s i s a v a r i a b l e which gets at the • 153 e f f e c t of the d i s e a s e i t s e l f on the p a t i e n t ' s a d h e r e n c e behaviour. Two f a c t o r s were shown to have m i l d a s s o c i a t i o n when compared ac r o s s groups. These f a c t o r s are the p e r c e p t i o n of c u r r e n t d i s e a s e s e v e r i t y , and amount of time elapsed s i n c e d i a g n o s i s . Median t e s t a n a l y s i s i n d i c a t e s t h a t c h r o n i c nonadherents tend to have known about t h e i r d i a g n o s i s f o r a s h o r t e r p e r i o d of time (100% equal to or below median) than the comparison group (66.6% equal to or below median). As w e l l , c h r o n i c nonadherents tend to f e e l that t h e i r d i s e a s e i s l e s s s e v e r e ( 8 7 . 5 % e q u a l t o or below median) t h a n t h e comparison group (42.9% equal to or below median). A l l r e s p o n d e n t s l i s t e d one of four d i f f e r e n t types of a r t h r i t i s as t h e i r main m e d i c a l p r o b l e m . In o r d e r o f o c c u r r e n c e , they were as f o l l o w s : o s t e o a r t h r i t i s (40.0%), ankylosing s p o n d y l i t i s (26.7%), rheumatoid a r t h r i t i s (20.0%), and p s o r i a t i c a r t h r i t i s (13.3%). No r e l a t i o n s h i p was evident between d i a g n o s i s , and group c a t e g o r y . A second i l l n e s s f a c t o r w hich a l s o d i d not show a r e l a t i o n s h i p w i t h group c a t e g o r i z a t i o n was i m p a c t o f t h e i l l n e s s . F r e q u e n c y d i s t r i b u t i o n s f o r t h i s v a r i a b l e i n d i c a t e that most respondents f e l t t h a t , t o date, t h e i r i l l n e s s has had a great impact on t h e i r l i v e s (66.7%). A smaller percentage (20.0%) f e l t t h a t t h e i r i l l n e s s has had a moderate impact, and o n l y 13.3% f e l t that t h e i r a r t h r i t i s has had a minimal impact on t h e i r l i v e s . 154 S a t i s f a c t i o n with P r a c t i t i o n e r A t t r i b u t e s A l t h o u g h e a c h o f t h e s e v a r i a b l e s a r e s e p a r a t e and d i s t i n c t , they w i l l be d i s c u s s e d as a group s i n c e p r e v i o u s r e s e a r c h has shown t h a t i t i s d i f f i c u l t f o r p a t i e n t s t o d i s t i n g u i s h between the t e c h n i c a l and s o c i o e m o t i o n a l aspects of t h e i r h e a l t h p r a c t i t i o n e r ' s care (DiMatteo & Hays, 1980). F u r t h e r e v i d e n c e f o r t h e u s e f u l n e s s i n g r o u p i n g t h e s e v a r i a b l e s t o g e t h e r comes from a s t a t e m e n t o f one o f t h e r e s p o n d e n t s i n t e r v i e w e d i n the s t u d y . A c c o r d i n g t o t h i s p a t i e n t , the three f a c t o r s that he r e s p e c t s i n a p r a c t i t i o n e r are knowledge, the a b i l i t y to make him f e e l c omfortable, and the a b i l i t y to communicate. In other words, he i s r e f e r r i n g to t e c h n i c a l competence, a f f e c t i v e c a r e , and communication. A l t h o u g h , as s t a t e d e a r l i e r , no 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 i n d i n g s were achieved, t - t e s t a n a l y s i s shows there was some degree of d i f f e r e n c e between the s a t i s f a c t i o n h e l d by the c h r o n i c nonadherent group and the comparison group (see Table 17). I n s e r t Table 17 about here What seemed evident was that the c h r o n i c nonadherent group was somewhat more d i s s a t i s f i e d w i t h t h e i r p h y s i o t h e r a p i s t s communication, a f f e c t i v e c a r e and t e c h n i c a l competence than was the comparison group (see Table 18). 155 Table 17 T-Test A n a l y s i s of S a t i s f a c t i o n with P r a c t i t i o n e r A t t r i b u t e s  by A r t h r i t i s S o c i e t y C a t e g o r i z a t i o n A f f e c t i v e Care Mean* SD t 2 - T a i l Prob Chronic Nonadherent Group 21.4 6.5 1.32 0.210 Comparison Group 17.6 4.3 Communication Mean* SD t 2 - T a i l Prob Chronic Nonadherent Group 17.1 6.0 1.08 0.300 Comparison Group 14.0 5.2 T e c h n i c a l Competence Mean* SD t 2 - T a i l Prob Chronic Nonadherent Group 5.5 2.3 Comparison Group 4.4 1.3 1.08 0.300 * Means were o b t a i n e d by s e p a r a t e l y summing the scores on the nine items r e l a t e d to a f f e c t i v e care, the seven items r e l a t e d to c o m m u n i c a t i o n , and t h e t h r e e i t e m s r e l a t e d t o t e c h n i c a l competence. The mean thus represents the average t o t a l score of each respondent i n each of the two groups. 156 I n s e r t Table 18 about here As one p a t i e n t d e s c r i b e d i t , "I had to have something to keep me mobile and at the same time t o not do any more damage than was necessary. So I had to j u s t f i g u r e i t out myself". The reason he f e l t he had to f i g u r e i t out himself was because the p h y s i o t h e r a p i s t s were not h e a r i n g h i s expressed need t o do more e x e r c i s e s than what he had been given to do. Shared R e s p o n s i b i l i t y T a b l e 19 shows the condensed c r o s s - t a b u l a t i o n s of the fou r s h a r e d r e s p o n s i b i l i t y models a c c o r d i n g t o A r t h r i t i s Society c a t e g o r i z a t i o n I n s e r t Table 19 about here Table 20 i l l u s t r a t e s the same data with m e d i a n - s p l i t c r o s s -t a b u l a t i o n s . I n s e r t Table 20 about here As a p o p u l a t i o n , the c h r o n i c nonadherent group tended to 157 Table 18 C r o s s - T a b u l a t i o n s : P a t i e n t S a t i s f a c t i o n with P r a c t i t i o n e r  A t t r i b u t e s by A r t h r i t i s S o c i e t y C a t e g o r i z a t i o n P r a c t i t i o n e r A t t r i b u t e s Chronic Comparison Nonadherent Group Group No. % No Q. . O n = 8 n = 7 A f f e c t i v e Care S a t i s f i e d 6 75.0 7 100.0 D i s s a t i s f i e d 2 25.0 0 0.0 A f f e c t i v e Care (Median S p l i t ) S a t i s f i e d 3 37.5 4 57.1 D i s s a t i s f i e d .5 62.5 3 42.9 Communication S a t i s f i e d 6 75.0 7 100.0 D i s s a t i s f i e d 2 25.0 0 0.0 Communication (Median S p l i t ) S a t i s f i e d 4 50.0 4 57.1 D i s s a t i s f i e d 4 50.0 3 42.9 ( t a b l e c o n t i n u e s ) 158 P r a c t i t i o n e r A t t r i b u t e s Chronic Comparison Nonadherent Group Group No. % No. % n = 8 n = 7 T e c h n i c a l Competence S a t i s f i e d 9 100.0 7 100.0 D i s s a t i s f i e d 0 0.0 0 0.0 T e c h n i c a l Competence (Mdn S p l i t ) S a t i s f i e d 3 37.5 5 71.4 D i s s a t i s f i e d 5 62.5 2 28.6 159 Table 19 C r o s s - T a b u l a t i o n s : Shared R e s p o n s i b i l i t y Models by A r t h r i t i s S o c i e t y C a t e g o r i z a t i o n Shared R e s p o n s i b i l i t y C h r o n i c Comparison Model Nonadherent Group Group No. % No. % n = 8 n = 7 Moral Model (High Blame/High C o n t r o l ) Low 3 37.5 1 14.3 High 5 62.5 6 85.7 Medical Model (Low Blame/Low Co n t r o l ) Low 6 75.0 7 100.0 High 2 25.0 0 0.0 Compensatory Model (Low Blame/High C o n t r o l ) Low 0 0.0 0 0.0 High 8 100.0 7 100.0 ( t a b l e c o n t i n u e s ) 160 Shared R e s p o n s i b i l i t y Chronic Comparison Model Nonadherent Group Group No. % No. % n = 8 n = 7 Enlightenment Model (High Blame/Low C o n t r o l ) Low 6 75.0 6 85.7 High 2 25.0 1 14.3 161 Table 20 C r o s s - T a b u l a t i o n s : Shared R e s p o n s i b i l i t y Models by A r t h r i t i s  S o c i e t y C a t e g o r i z a t i o n (Median S p l i t s Shared R e s p o n s i b i l i t y Chronic Comparison Model Nonadherent Group Group No. O, "6 No. % n = 8 n = 7 Moral Model (High Blame/High C o n t r o l ) Low 5 62.5 3 42.9 High 3 37.5 4 57.1 Medical Model (Low Blame/Low C o n t r o l ) Low 5 62.5 3 42.9 High 3 37.5 4 57.1 Compensatory Model (Low Blame/High C o n t r o l ) Low 3 37.5 5 71.4 High 5 62.5 2 28.6 Enlightenment Model (High Blame/Low C o n t r o l ) Low 4 50.0 3 42.9 High 4 50.0 4 57.1 162 be d i f f i c u l t to c a t e g o r i z e . With a l l of the models, e x c e p t i n g the compensatory model (low blame/high c o n t r o l ) , t h i s group t e n d e d t o show a g r e a t e r d i s p e r s i o n o f s c o r e s t h a n t h e comparison group. While the comparison group scored high on the moral ( h i g h blame/high c o n t r o l ) and compensatory (low b l a m e / h i g h c o n t r o l ) m o d e l s , and low on t h e m e d i c a l (low blame/low c o n t r o l ) and enlightenment (high blame/low c o n t r o l ) models, the only area with which every member of the c h r o n i c nonadherent group showed agreement was a h i g h compensatory (low blame/high c o n t r o l ) s c o r e . What t h i s i n d i c a t e s i s t h a t the c h r o n i c nonadherent group tended to b e l i e v e that they were not to blame f o r t h e i r d i s e a s e , and they should be i n c o n t r o l f o r d e a l i n g w i t h i t . On the other hand, the scores f o r the comparison group s i g n i f y t h a t a h i g h l e v e l o f c o n t r o l was important, r e g a r d l e s s of the l e v e l of accompanying blame. Overall S a t i s f a c t i o n One o f the c r i t i c i s m s which has been brought a g a i n s t previous s t u d i e s i s that g l o b a l measures of s a t i s f a c t i o n o f t e n obscure s p e c i f i c a r e a s , w i t h which a p a t i e n t may be f e e l i n g d i s s a t i s f a c t i o n (Pascoe & A t t k i s s o n , 1983). That i s , i t i s not s u f f i c i e n t t o know whether someone i s s a t i s f i e d o r d i s s a t i s f i e d . In order f o r these r e s u l t s to have meaning i t i s important to know which a s p e c t s of c a r e are c a u s i n g the d i s s a t i s f a c t i o n . In t h i s s t u d y , t - t e s t a n a l y s i s i n d i c a t e d t h a t some 163 d i f f e r e n c e s were evident i n the t o t a l l e v e l of s a t i s f a c t i o n of t h e two g r o u p s ( s e e T a b l e 21) s u c h t h a t t h e c h r o n i c nonadherent group tended to be much more d i s s a t i s f i e d than the comparison group. I n s e r t Table 21 about here In l o o k i n g a t s p e c i f i c s a t i s f a c t i o n q u e s t i o n s i t was found that 40% of the t o t a l respondents f e l t that they d i d not get the k i nd of s e r v i c e they wanted, and 46.6% d i d not f e e l t h a t many of t h e i r needs were being met. I t was i n t e r e s t i n g t o note t h a t t h e d i s s a t i s f a c t i o n w i t h the ' k i n d o f s e r v i c e o f f e r e d ' was almost e q u a l l y s p r e a d between both groups as c r o s s - t a b u l a t i o n r e v e a l e d that the c h r o n i c nonadherent group was only s l i g h t l y more d i s s a t i s f i e d than the comparison group. T h i s was not the case w i t h the second element as c h r o n i c nonadherents were much more l i k e l y t o f e e l that t h e i r needs were n o t g e t t i n g met (62.5%) t h a n were members o f t h e comparison group (28.6%) (see Table 22 and Table 23). I n s e r t Table 22 about here 164 Table 21 T-Test A n a l y s i s of O v e r a l l S a t i s f a c t i o n by A r t h r i t i s S o c i e t y  C a t e g o r i z a t i o n S a t i s f a c t i o n Mean* SD t 2 - T a i l Prob Chronic Nonadherent Group 14.3 5.7 1.32 0.210 Comparison Group 11.0 3.5 * Means were obtained by f i r s t summing the scores on the seven items r e l a t e d t o s a t i s f a c t i o n . The mean thus r e p r e s e n t s the average t o t a l score of each respondent i n each group. 165 Table 22 C r o s s - T a b u l a t i o n : S a t i s f a c t i o n with "Kind of S e r v i c e O f f e r e d "  by A r t h r i t i s S o c i e t y C a t e g o r i z a t i o n S a t i s f a c t i o n Chronic Comparison Nonadherent Group Group No. % No. % n = 8 n = 7 S a t i s f i e d 4 50.0 5 71.4 D i s s a t i s f i e d 4 50.0 2 28.6 166 I n s e r t Table 23 about here A t t i t u d e s of S i g n i f i c a n t Others The next v a r i a b l e to be d i s c u s s e d i s the r e a c t i o n s of s i g n i f i c a n t f i g u r e s . No d i f f e r e n c e s were evident between the two g r o u p s as most r e s p o n d e n t s r e p o r t e d t h a t s i g n i f i c a n t o t h e r s were e i t h e r s a t i s f i e d w i t h , or i n d i f f e r e n t t o t h e i r home e x e r c i s e program. Ose of A l t e r n a t i v e Treatments The s e c o n d l a s t v a r i a b l e i s the use o f a l t e r n a t i v e t r e a t m e n t s by p a t i e n t s . A l t e r n a t i v e t r e a t m e n t s r e f e r s t o unorthodox t h e r a p i e s and medicines that are not recommended by the A r t h r i t i s S o c i e t y , but which are used by p a t i e n t s i n the hopes of f i n d i n g a more e f f e c t i v e cure f o r t h e i r d i s e a s e . In l o o k i n g a t the r e s u l t s of the c r o s s - t a b u l a t i o n i t was found t h a t c h r o n i c n o n a d h e r e n t s a r e much more l i k e l y t o use a l t e r n a t i v e t r e a t m e n t s (87.5%) than a r e comparison group members (14.2%) (see T a b l e 24). T h i s was the o n l y t e s t c a r r i e d out on t h i s v a r i a b l e , t h e r e f o r e the s t r e n g t h of t h i s r e l a t i o n s h i p i s not known. In s e r t Table 24 about here 167 Table 23 C r o s s ^ T a b u l a t i o n : S a t i s f a c t i o n with "Having Needs Met" by A r t h r i t i s S o c i e t y C a t e g o r i z a t i o n S a t i s f a c t i o n Chronic Comparison Nonadherent Group Group No. % No. % n = 8 n = 7 S a t i s f i e d 3 37.5 5 71.4 D i s s a t i s f i e d 5 62.5 2 28.6 168 Table 24 C r o s s - T a b u l a t i o n : Use of A l t e r n a t i v e Treatments by A r t h r i t i s  S o c i e t y C a t e g o r i z a t i o n Use of A l t e r n a t i v e Treatments Chronic Comparison Nonadherent Group Group No. % No. % n = 8 n = 7 None 1 or more 1 12.5 6 85.7 7 87.5 1 14.3 169 The v a r i o u s a l t e r n a t i v e t h e r a p i e s which were mentioned by respondents are as f o l l o w s : d i e t ( 5 ) , m e d i t a t i o n ( 3 ) , massage (2), r e l a x a t i o n ( 2 ) , naturopathy ( 2 ) , v i s u a l i z a t i o n ( 2 ) , yoga (1 ) , Chinese h e r b a l teas (1), c o l o n i c s (1)/ and V i t a m i n C ( 1 ) . The number i n b r a c k e t s i n d i c a t e s the number of d i f f e r e n t respondents who used each type of treatment. Problems with the Home E x e r c i s e Program No d i f f e r e n c e s were e v i d e n t b e t w e e n t h e p r o b l e m s e x p e r i e n c e d by t h e c h r o n i c n o n a d h e r e n t g r o u p and t h e comparison group. 170 P o s s i b l e E x p l a n a t i o n s f o r the M i s i d e n t i f i c a t i o n Phenomena Upon l o o k i n g at the f i n d i n g s one q u e s t i o n which comes to mind i s why are 25% of the c h r o n i c nonadherent group a c t u a l l y a d h e r e n t . Or i n o t h e r words, what c a u s e s someone t o be i d e n t i f i e d as nonadherent when, i n f a c t , t h i s i s not the case. S e v e r a l e x p l a n a t i o n s p r o v i d e a p o s s i b l e answer t o t h i s q u e s t i o n . The f i r s t e x p l a n a t i o n i s t h a t s i n c e these r e s u l t s a r e b a s e d on a v e r y s m a l l s a m p l e , r e s e a r c h f i n d i n g s may be a c c o u n t e d f o r by an e r r o r i n measurement. Because of the s m a l l sample s i z e any e r r o r has the p o s s i b i l i t y of g r e a t l y a l t e r i n g the f i n d i n g s of the study. E a r l i e r i t was s t a t e d that one of the s e l e c t i o n c r i t e r i a f o r t h e c h r o n i c n o n a d h e r e n t group was s e l f - a d m i s s i o n of n o n a d h e r e n c e . A s e c o n d e x p l a n a t i o n f o r what c o u l d be happening i s that the d e f i n i t i o n of nonadherence used by some p a t i e n t s may be d i f f e r e n t from the d e f i n i t i o n used i n t h i s study. For example, some p a t i e n t s i n the c h r o n i c nonadherent study may have f e l t that an o c c a s i o n a l l a p s e of t h e i r e x e r c i s e r o u t i n e c o n s t i t u t e d nonadherence. Thus, by the d e f i n i t i o n of n o n a d h e r e n c e u s e d f o r t h i s s t u d y , t h e s e p a t i e n t s would a c t u a l l y be c o n s i d e r e d a d h e r e n t t o t h e i r home e x e r c i s e programs. A t h i r d p o s s i b i l i t y i s that the adherence behaviours of some of the c h r o n i c nonadherent group may have changed between the time of t h e i r s e l f - a d m i s s i o n of nonadherence, and when 171 adherence behaviours were measured f o r the study. Although no members o f the c h r o n i c nonadherent group made mention of r e c e n t m o d i f i c a t i o n s , the f a c t t h a t changes are p o s s i b l e i s e x e m p l i f i e d by one of the comparison group members. He s t a t e d that he o n l y r e c e n t l y became adherent to h i s e x e r c i s e program as a r e s u l t of an onset of severe p a i n . A f o u r t h e x p l a n a t i o n i s t h a t the r e s p o n d e n t s i n t h e c h r o n i c nonadherent group, i d e n t i f i e d i n the study as being adherent, may have m i s r e p r e s e n t e d t h e i r adherence behaviours t o t h e i n t e r v i e w e r . I t seems r e a s o n a b l e to s u g g e s t t h a t adherence i s a s o c i a l l y d e s i r a b l e behaviour, and thus some of the r e s p o n d e n t s may have f e l t ashamed t o admit t h a t t h e y e ngaged i n a s o c i a l l y u n d e s i r a b l e b e h a v i o u r . A l t h o u g h p o s s i b l e , t h i s e x p l a n a t i o n does not seem f e a s i b l e c o n s i d e r i n g t h a t a l l o f t h e r e s p o n d e n t s had f r e e l y a d m i t t e d b e i n g n o n a d h e r e n t on o t h e r o c c a s i o n s . As w e l l , t h e s t u d y i n c o r p o r a t e d techniques to counteract the e f f e c t s of p o s i t i v e s e l f - p r e s e n t a t i o n . Thus, t h i s e x p l a n a t i o n does not seem l i k e l y . In o r d e r t o a s s e s s the v a l i d i t y o f t h e s e and o t h e r e x p l a n a t i o n s i t might be prudent to look a t some of the other f i n d i n g s i n the study. These may help to shed some l i g h t on the q u e s t i o n of why some of the c h r o n i c nonadherent group are a c t u a l l y a d h e r e n t . One c l u e to t h i s p u z z l e may come from l o o k i n g at the d i f f e r e n c e between v a r i a b l e s a s s o c i a t e d w i t h group membership, and those a s s o c i a t e d with adherence. 172 One d i f f e r e n c e which becomes apparent i s that the c h r o n i c nonadherent group i s r e l a t i v e l y homogeneous, demographically s p e a k i n g . Members of t h i s group tend to be younger, l i v i n g a l o n e , and not m a r r i e d . As w e l l , they are l i k e l y t o have a lower e d u c a t i o n , t o be unemployed, and to r e c e i v e a lower income. T h i s same degree of homogeneity was not found when adherents were compared to nonadherents. In a d d i t i o n to p e r c e i v i n g t h e i r p r a c t i t i o n e r ' s as poor communicators, members of the c h r o n i c nonadherent group a l s o tended to be more l i k e l y to express d i s s a t i s f a c t i o n with the q u a l i t y o f t h e i r p h y s i o t h e r a p i s t ' s a f f e c t i v e c a r e and t e c h n i c a l competence. T h i s seems reasonable c o n s i d e r i n g t h a t these respondents a l s o tended to be more d i s s a t i s f i e d , i n an o v e r a l l sense, i n r e l a t i o n to the comparison group. A t h i r d f a c t o r which seems important to mention i s t h a t c h r o n i c nonadherents make much more of an e x t e n s i v e use of a l t e r n a t i v e treatments than the comparison group. These are treatments which are n o r m a l l y frowned upon by the A r t h r i t i s S o c i e t y because of t h e i r q u e s t i o n a b l e t h e r a p e u t i c v a l u e . What seems t o be emerging i s a p i c t u r e of a c h r o n i c n o n a d h e r e n t g r o u p w h i c h h a s s i m i l a r d e m o g r a p h i c c h a r a c t e r i s t i c s , are more d i s s a t i s f i e d than a comparison group o f a r t h r i t i s p a t i e n t s , and who p o s s i b l y e x p r e s s t h e i r d i s s a t i s f a c t i o n with c o n v e n t i o n a l medicine by making use of unorthodox remedies. Based on t h i s i n f o r m a t i o n a p o s s i b l e f i f t h e x p l a n a t i o n i s 173 t h a t a d h e r e n t s were l a b e l l e d by the A r t h r i t i s S o c i e t y as deviants because they shared many of the same c h a r a c t e r i s t i c s as the other nonadherents. That i s , they tended to express d i s s a t i s f a c t i o n w i t h t h e t r a d i t i o n a l m e d i c a l p r a c t i c e s e spoused by t h e A r t h r i t i s S o c i e t y , and i n s t e a d v o c a l i z e d support f o r more u n c e r t a i n t h e r a p i e s . T h i s might a l s o e x p l a i n why respondents i n the comparison group, who turned out to be nonadherent, were not p e r c e i v e d as such. That t h i s , they d i d not f i t i n t o the mold which would have i d e n t i f i e d them as n o n a d h e r e n t s . Thus, t h e y may have been d e m o g r a p h i c a l l y d i s s i m i l a r , they may not have v o c a l i z e d or been d i s s a t i s f i e d with the A r t h r i t i s S o c i e t y , and/or they may not have expressed ah i n t e r e s t i n marginal remedies. U n f o r t u n a t e l y t h e r e i s not enough i n f o r m a t i o n a v a i l a b l e to know d e c i s i v e l y why some members of the c h r o n i c nonadherent g r o u p w e r e a d h e r e n t . T h u s , t o c h o o s e o n e o f t h e a f o r e m e n t i o n e d e x p l a n a t i o n s as b e i n g most v a l i d would be h i g h l y s p e c u l a t i v e and premature. For now i t w i l l have to s u f f i c e , to say t h a t a l l e x p l a n a t i o n s s h o u l d be g i v e n equal c o n s i d e r a t i o n . However, s i n c e the n o t i o n of l a b e l l i n g and deviance has been brought up as a p o s s i b l e e x p l a n a t i o n , i t may be b e n e f i c i a l to explore t h i s s u b j e c t i n g r e a t e r d e t a i l . L a b e l l i n g Deviant Behaviour Gove (1980) s t a t e s t h a t p e o p l e a r e o f t e n l a b e l l e d as d e v i a n t because they e i t h e r engage i n d e v i a n t behaviour, or 174 have, c h a r a c t e r i s t i c s which make them appear d e v i a n t . As Schur (1980) s t a t e s , " t h e r e f e r e n c e t o t h e ' p e r c e i v e d ' d e v i a t o r i s important because a person can be r e a c t e d t o , even 'processed' as d e v i a n t , r e g a r d l e s s of whether he or she a c t u a l l y committed the o b j e c t i o n a b l e a c t . Here, as i n the c o l l e c t i v e p e r c e p t i o n of t h r e a t , i t i s the p e r c e p t i o n that counts" (p. 12). Thus, as Schur i s say i n g , someone can be l a b e l l e d and r e a c t e d to as d e v i a n t when, i n r e a l i t y , the t r u t h of the matter can be much d i f f e r e n t . E vidence for the c u r r e n t use of l a b e l l i n g i n the h e a l t h p r o f e s s i o n comes from T a y l o r (1979). She s t a t e s that h o s p i t a l p a t i e n t s a r e o f t e n c a t e g o r i z e d as 'good p a t i e n t s ' or 'bad p a t i e n t s ' b a s e d on t h e i r a c t i o n s w h i l e h o s p i t a l i z e d . A c c o r d i n g t o T a y l o r (1979), "the 'good p a t i e n t ' i s h i g h l y regarded by the s t a f f because he or she i s c o m p l i a n t , non-c o m p l a i n i n g , non-demanding, and g e n e r a l l y p a s s i v e " (p.168). Contrary to these b e h a v i o u r s , T a y l o r i n d i c a t e s t h a t the bad p a t i e n t complains e x c e s s i v e l y , i s o f t e n angry, seeks a t t e n t i o n i n a p p r o p r i a t e l y , and i s f r e q u e n t l y non-compliant. Schur ( 1980 ) s u g g e s t s t h a t one o f t h e r e a s o n s why l a b e l l i n g occurs i s i n order f o r a s o c i e t y to set and m a i n t a i n some type of s t a n d a r d s as to what c o n s t i t u t e s a p p r o p r i a t e b e h a v i o u r . C e r t a i n a c t i v i t i e s a r e l a b e l l e d as d e v i a n t i n order t o h e l p c o n t a i n or l i m i t t h e i r p r o l i f e r a t i o n . For example, by d e f i n i n g c r i m i n a l behaviour as d e v i a n t , the hope i s t h a t the stigma a t t a c h e d to the l a b e l w i l l prevent other people from u n d e r t a k i n g c r i m i n a l a c t i v i t i e s . S i m i l a r l y , by 175 l o o k i n g upon nonadherence as deviant behaviour, the i n t e n t i o n i s to encourage other p a t i e n t s to adhere to t h e i r t h e r a p e u t i c regimes. Although t h i s would seem to have a b e n e f i c i a l r o l e , l a b e l l i n g has many negative r a m i f i c a t i o n s . One of the outcomes of l a b e l l i n g mentioned by Schur i s t h a t p e o p l e a r e t r e a t e d as a c a t e g o r y r a t h e r t h a n as i n d i v i d u a l s . T h i s process of d e p e r s o n a l i z a t i o n allows those who a r e d o i n g t h e l a b e l l i n g t o e n g a g e i n c o l l e c t i v e , d i s c r i m i n a t i o n . The d i s c r i m i n a t i o n i s p e r m i t t e d because i t i s being d i r e c t e d towards l a b e l s and not people. T a y l o r (1979) p o i n t s to the f a c t t h at d i f f i c u l t h o s p i t a l p a t i e n t s are o f t e n d i s c r i m i n a t e d a g a i n s t by s t a f f members who i g n o r e them, or g i v e t h e i r c o m p l a i n t s l e s s than due a t t e n t i o n . She a l s o mentions other d i s c r i m i n a t o r y p r a c t i c e s which i n c l u d e o v e r -m e d i c a t i o n , r e f e r r a l t o p s y c h i a t r i c s e r v i c e s , and premature d i s c h a r g e from h o s p i t a l . By a l l o w i n g the use of c o l l e c t i v e responses, l a b e l l i n g prevents problems from being d e a l t with on an i n d i v i d u a l b a s i s . In other words, the l a b e l b l o c k s the i n d i v i d u a l from being seen as they r e a l l y are. In the case of the d i f f i c u l t p a t i e n t d e s c r i b e d by T a y l o r , i t i s important to r e a l i z e that the o b j e c t i o n a b l e behaviour may be the r e s u l t of the p a t i e n t r e a c t i n g to a l o s s of c o n t r o l . Likewise, p r e v i o u s d i s c u s s i o n i n t h i s paper p o i n t s to a number of p o s s i b l e causes of n onadherence. However, i n b o t h c a s e s , l a b e l l i n g can prevent the p r a c t i t i o n e r from t a k i n g an in-depth look i n t o the cause of that p a r t i c u l a r i n d i v i d u a l ' s deviant behaviour. 176 A second r a m i f i c a t i o n o f l a b e l l i n g i s t h a t i t may l e a d t o s e l f - f u l f i l l i n g b ehaviours. For example, someone l a b e l l e d as a j u v e n i l e d e l i n q u e n t may i n t e n s i f y the a c t i v i t i e s w h ich o r i g i n a l l y brought the l a b e l on i n the f i r s t p l a c e . I n s t e a d o f r e c t i f y i n g t h e s i t u a t i o n , the p r o c e s s o f l a b e l l i n g has r e s u l t e d i n t h e e n t r e n c h m e n t o f t h e d e v i a n t b e h a v i o u r . L i k e w i s e , i f someone has never e x h i b i t e d d e v i a n t b e h a v i o u r , b u t i s u n j u s t l y l a b e l l e d as s u c h , t h e y may b e g i n t o see themselves as d e v i a n t , and to a c t i n a manner a p p r o p r i a t e t o the l a b e l . 

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