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The relationship between uncertainty and coping strategies used by long-term kidney transplant patients Swanson, Dorothy Roberta 1991

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THE RELATIONSHIP BETWEEN UNCERTAINTY AND COPING STRATEGIES USED BY LONG-TERM KIDNEY TRANSPLANT PATIENTS By DOROTHY ROBERTA SWANSON B.S.N., The U n i v e r s i t y of V i c t o r i a , 1988 A THESIS SUBMITTED IN PARTIAL FULFILMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING i n THE FACULTY OF GRADUATE STUDIES ( S c h o o l o f N u r s i n g ) We a c c e p t t h i s t h e s i s as c o n f o r m i n g t o t h e r e q u i r e d s t a n d a r d THE UNIVERSITY OF BRITISH COLUMBIA September, 1991 (£) Dorothy R o b e r t a Swanson, 1991 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 N u r s i n g  The University of British Columbia Vancouver, Canada Date September 20, 1991 DE-6 (2/88) ABSTRACT T h i s d e s c r i p t i v e c o r r e l a t i o n a l s t u d y was done t o d e s c r i b e t h e p e r c e p t i o n s o f u n c e r t a i n t y and c o p i n g s t r a t e g i e s used by a d u l t k i d n e y t r a n s p l a n t p a t i e n t s . I n a d d i t i o n , t h e s t u d y was d e s i g n e d t o i d e n t i f y r e l a t i o n s h i p s between u n c e r t a i n t y and c o p i n g s t r a t e g i e s used by l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s . The s t r e s s , a p p r a i s a l , and c o p i n g t h e o r y d e v e l o p e d by L a z a r u s and Folkman (1984) s e r v e d as t h e t h e o r e t i c a l framework. A c o n v e n i e n c e sample o f 88 s u b j e c t s who r e c e i v e d e i t h e r a l i v i n g - r e l a t e d o r c a d a v e r i c donor k i d n e y t r a n s p l a n t and were t h r e e and more y e a r s p o s t - t r a n s p l a n t completed t h e U n c e r t a i n t y S t r e s s S c a l e (USS), t h e r e v i s e d J a l o w i e c C o p i n g S c a l e ( J C S ) , and a p a t i e n t i n f o r m a t i o n s h e e t . The s u b j e c t s were m a i l e d t h e q u e s t i o n n a i r e . F o r t h e m a j o r i t y of p a t i e n t s , t h i s was t h e i r f i r s t k i d n e y t r a n s p l a n t . The number o f y e a r s t h a t p a t i e n t s had l i v e d w i t h t h e i r c u r r e n t k i d n e y t r a n s p l a n t ranged from 3.1 t o 20.9 y e a r s w i t h t h e m a j o r i t y of p a t i e n t s t r a n s p l a n t e d under 10 y e a r s . O v e r a l l , l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s p e r c e i v e d m o d e r a t e l y low l e v e l s o f u n c e r t a i n t y . The n a t u r e o f u n c e r t a i n t y appears t o be p r i m a r i l y g e n e r a t e d by t h e i n d e t e r m i n a t e n e s s o f t h e s i t u a t i o n . Numbers of h e a l t h o r m e d i c a l problems a s i d e from r e n a l d i s e a s e and e d u c a t i o n a l l e v e l appear t o be s i g n i f i c a n t f a c t o r s i n t h e u n c e r t a i n t y o f p a t i e n t s w i t h a l o n g - t e r m k i d n e y t r a n s p l a n t . More h e a l t h problems and l o w e r l e v e l s o f e d u c a t i o n appear t o be a s s o c i a t e d w i t h h i g h e r l e v e l s o f u n c e r t a i n t y . K i d n e y t r a n s p l a n t p a t i e n t s use v a r i o u s c o p i n g s t r a t e g i e s t o manage u n c e r t a i n t y and t h e s t r e s s i t g e n e r a t e s . There was a p r e f e r e n c e t o use o p t i m i s t i c , s e l f - r e l i a n t , and c o n f r o n t i v e c o p i n g . There was a l s o a g e n e r a l tendency t o use p r o blem o r i e n t e d forms of c o p i n g . P a t i e n t s appear t o c o n c e n t r a t e on t h e e lements of hope, p o s i t i v e t h i n k i n g , c o n t r o l , and a r a t i o n a l and c o n s t r u c t i v e approach t o p r o b l e m - s o l v i n g . S i g n i f i c a n t p o s i t i v e r e l a t i o n s h i p s between u n c e r t a i n t y and c o p i n g s t r a t e g i e s s u p p o r t e d t h e s t r e s s , a p p r a i s a l , and c o p i n g t h e o r y . F i n d i n g s i n d i c a t e t h a t p a t i e n t s w i t h h i g h e r l e v e l s o f u n c e r t a i n t y g e n e r a l l y t e n d t o use e m o t i o n - f o c u s e d s t r a t e g i e s such as e v a s i v e , f a t a l i s t i c , and emotive c o p i n g . Long-term k i d n e y t r a n s p l a n t p a t i e n t s p e r c e i v e d low l e v e l s o f s t r e s s g e n e r a t e d by t h e i r u n c e r t a i n t y . The d i r e c t i o n and t h e magnitude of t h e r e l a t i o n s h i p s u g g e s t s a s i g n i f i c a n t p o s i t i v e a s s o c i a t i o n between u n c e r t a i n t y and s t r e s s ( r =.94, p_ =.00). Based upon t h e f i n d i n g s o f t h i s s t u d y , i m p l i c a t i o n s were s u g g e s t e d f o r new d i r e c t i o n s f o r t h e p r o v i s i o n o f e f f e c t i v e h e a l t h c a r e f o r k i d n e y t r a n s p l a n t p a t i e n t s . I t i s recommended t h a t f u r t h e r r e s e a r c h i s needed t o i d e n t i f y and e x p l o r e r e l a t i o n s h i p s among a p p r a i s a l , c o p i n g s t r a t e g i e s , and outcomes o f p a t i e n t s w i t h k i d n e y t r a n s p l a n t s o v e r t i m e . TABLE OF CONTENTS Pag ABSTRACT i i TABLE OF CONTENTS i v LIST OF TABLES v i i LIST OF FIGURES v i i i ACKNOWLEDGEMENTS . i x CHAPTER ONE: INTRODUCTION Background t o t h e Problem 1 Statement o f t h e Problem 5 Purpose 5 T h e o r e t i c a l Framework 6 C o g n i t i v e A p p r a i s a l 6 Co p i n g S t r a t e g i e s 9 R e a p p r a i s a l 9 Summary 10 Re s e a r c h Q u e s t i o n s 10 D e f i n i t i o n o f Terms 10 S i g n i f i c a n c e of t h e Study 12 O r g a n i z a t i o n o f T h e s i s Content 13 CHAPTER TWO: REVIEW OF SELECTED LITERATURE I n t r o d u c t i o n 15 U n c e r t a i n t y 15 The Concept o f U n c e r t a i n t y 15 S i g n i f i c a n c e o f U n c e r t a i n t y i n C h r o n i c I l l n e s s 19 Co p i n g S t r a t e g i e s 29 The Concept of Coping S t r a t e g i e s . . 29 Cop i n g S t r a t e g i e s Used by P a t i e n t s i n ESRD 32 U n c e r t a i n t y and I n f l u e n c e s on Co p i n g S t r a t e g i e s 35 Summary o f t h e L i t e r a t u r e Review 39 CHAPTER THREE: METHODS I n t r o d u c t i o n 42 Re s e a r c h D e s i g n 42 Sampling P r o c e d u r e 42 Data C o l l e c t i o n I n s t r u m e n t s 43 U n c e r t a i n t y S t r e s s S c a l e (USS) 44 J a l o w i e c Coping S c a l e (JCS) 49 Page P a t i e n t I n f o r m a t i o n Sheet 56 Data C o l l e c t i o n P r o c e d u r e s 56 Assumptions 57 L i m i t a t i o n s 58 E t h i c a l C o n s i d e r a t i o n s . . . . 59 Data A n a l y s i s 60 Summary 61 CHAPTER FOUR: PRESENTATION AND DISCUSSION OF FINDINGS I n t r o d u c t i o n . . 63 C h a r a c t e r i s t i c s o f t h e Sample 63 Demographic C h a r a c t e r i s t i c s o f t h e Sample 63 H e a l t h C h a r a c t e r i s t i c s o f t h e Sample 65 K i d n e y T r a n s p l a n t H i s t o r y 66 F i n d i n g s 68 Rese a r c h Q u e s t i o n 1: R e g a r d i n g l e v e l and n a t u r e o f u n c e r t a i n t y 68 Rese a r c h Q u e s t i o n 2: R e g a r d i n g t y p e and f r e q u e n c y o f use of c o p i n g s t r a t e g i e s 71 Res e a r c h Q u e s t i o n 3: R e g a r d i n g t h e r e l a t i o n s h i p between u n c e r t a i n t y and c o p i n g s t r a t e g i e s 76 A n c i l l a r y F i n d i n g s 78 S t r e s s o f U n c e r t a i n t y 79 U n c e r t a i n t y and T h r e a t 81 U n c e r t a i n t y and P o s i t i v e F e e l i n g s 82 U n c e r t a i n t y and Demographic V a r i a b l e s .... 83 D i s c u s s i o n 83 C h a r a c t e r i s t i c s o f t h e Sample 84 D i s c u s s i o n of F i n d i n g s 88 U n c e r t a i n t y 88 Copi n g S t r a t e g i e s 97 R e l a t i o n s h i p Between U n c e r t a i n t y and Copi n g S t r a t e g i e s 115 D i s c u s s i o n of A n c i l l a r y F i n d i n g s 119 S t r e s s o f U n c e r t a i n t y 119 F e e l i n g s G enerated by U n c e r t a i n t y 121 Summary 124 CHAPTER FIVE: SUMMARY, CONCLUSIONS, IMPLICATIONS, AND RECOMMENDATIONS I n t r o d u c t i o n 127 Summary 127 C o n c l u s i o n s 131 I m p l i c a t i o n s 133 N u r s i n g P r a c t i c e and Theory 133 N u r s i n g E d u c a t i o n 137 v i Page Recommendations f o r F u r t h e r R esearch 138 REFERENCES 14 3 APPENDICES 153 Appendix A: R e v i s e d J a l o w i e c Coping S c a l e 154 Appendix B: U n c e r t a i n t y S t r e s s S c a l e 162 Appendix C: P a t i e n t I n f o r m a t i o n Sheet 167 Appendix D: F i v e A s p e c t s o f U n c e r t a i n t y 170 Appendix E: E i g h t Coping S t y l e s on t h e R e v i s e d J a l o w i e c Coping S c a l e 174 Appendix F: I n f o r m a t i o n L e t t e r 178 Appendix G: Request f o r Study R e s u l t s 180 Appendix H: Reminder/Thank-You L e t t e r 182 Appendix I : Rank O r d e r i n g of Coping S t r a t e g y Use R e p o r t e d by Long-Term K i d n e y T r a n s p l a n t P a t i e n t s 184 Appendix J : Rank O r d e r i n g o f C o p i n g S t r a t e g y E f f e c t i v e n e s s R e p o r t e d by Long-Term K i d n e y T r a n s p l a n t P a t i e n t s 187 Appendix K: A d d i t i o n a l Ways of C o p i n g and T h e i r E f f e c t i v e n e s s 190 Appendix L: New P a t i e n t s S t a r t i n g Treatment by Age and Sex, Canada, 1989 192 Appendix M: Frequency o f K i d n e y T r a n s p l a n t O p e r a t i o n s , Canada, 1981 - 1987 194 Appendix N: Causes of G r a f t F a i l u r e i n R e g i s t e r e d A d u l t P a t i e n t s , Canada, 1981 - 1988 196 Appendix 0: K i d n e y T r a n s p l a n t O p e r a t i o n s Performed by Year and L o c a t i o n , B r i t i s h C o lumbia, 1967 - 1987 198 Appendix P: Demographic V a r i a b l e s and L e v e l o f U n c e r t a i n t y 200 Appendix Q: Item Means on t h e U n c e r t a i n t y S c a l e 202 Appendix R: Item Means on t h e R e v i s e d J a l o w i e c Coping S c a l e 204 v i i LIST OF TABLES T a b l e Page I . Age D i s t r i b u t i o n of t h e sample a t Time of Study 64 I I . O c c u p a t i o n s of Long-Term K i d n e y T r a n s p l a n t P a t i e n t s 65 I I I . E d u c a t i o n L e v e l o f t h e Sample 65 IV. H e a l t h / M e d i c a l Problems R e p o r t e d 66 V. Age a t Time of K i d n e y T r a n s p l a n t 67 V I . Reasons f o r R e - t r a n s p l a n t a t i o n 68 V I I . T o t a l U n c e r t a i n t y f o r Long-Term K i d n e y T r a n s p l a n t P a t i e n t s 69 V I I I . O v e r a l l U n c e r t a i n t y L e v e l : V i s u a l Analogue . . 70 IX. USS Item and F a c t o r Means and S t a n d a r d D e v i a t i o n s 70 X. Number of Coping S t r a t e g i e s Used 71 X I . C o p i n g S t y l e Use and E f f e c t i v e n e s s 73-74 X I I . C o p i n g S t y l e Use and E f f e c t i v e n e s s S u b s c a l e and Item Means 75 X I I I . R e l a t i o n s h i p o f U n c e r t a i n t y and C o p i n g S t y l e s 77 XIV. C o r r e l a t i o n s of U n c e r t a i n t y F a c t o r s and C o p i n g S t y l e s 78 XV. T o t a l U n c e r t a i n t y S t r e s s S cores f o r t h e Sample 80 XVI. O v e r a l l S t r e s s : V i s u a l Analogue 80 X V I I . O v e r a l l T h r e a t : V i s u a l Analogue 82 X V I I I . O v e r a l l P o s i t i v e F e e l i n g s : V i s u a l Analogue 83 v i i i LIST OF FIGURES F i g u r e Page 1. T h e o r e t i c a l Framework 7 The S t r e s s , A p p r a i s a l , and Coping / Theory ( L a z a r u s & Folkman, 1984). ACKNOWLEDGEMENTS B e f o r e I began t h i s p r o j e c t , Dr. Ann H i l t o n s t i m u l a t e d my i n t e r e s t i n t h e phenomenon of u n c e r t a i n t y . I t was h e r e n t h u s i a s m w h i c h l e d me t o t h e c o n c e p t u a l i z a t i o n of t h e p r e s e n t s t u d y . I would l i k e t o thank h er f o r h er t h o u g h t f u l g u i d a n c e from t h e development o f t h e p r o p o s a l t o t h e f i n a l e d i t i n g o f t h e m a n u s c r i p t . I n a d d i t i o n , h er d e d i c a t e d a s s i s t a n c e and words o f encouragement made f u n d i n g f o r t h i s p r o j e c t p o s s i b l e . The p r e p a r a t i o n o f t h i s m a n u s c r i p t has been a c h a l l e n g i n g t a s k , made p o s s i b l e t h r o u g h t h e combined e f f o r t s o f my t h e s i s committee. I would e s p e c i a l l y l i k e t o thank t h e c h a i r o f t h e committee, Dr. Ann H i l t o n . I would l i k e t o e x p r e s s my g r a t i t u d e t o t h e o t h e r members o f t h e committee, C a r o l J i l l i n g s and R o s a l i e S t a r z o m s k i . Many thanks a r e due t o t h e s e i n d i v i d u a l s f o r t h e i r i n t e r e s t i n t h e s t u d y and f o r t h e i r u s e f u l comments, d i s c u s s i o n s , and s u g g e s t i o n s . S p e c i a l t h a n k s a r e a l s o due t o t h e 88 p a t i e n t s who t o o k t h e t i m e t o complete t h e q u e s t i o n n a i r e . W i t h o u t t h e i r r e s p o n s e s , t h i s p r o j e c t would not have been p o s s i b l e . I would a l s o l i k e t o note t h e a s s i s t a n c e o f Barb A t w a t e r , R a n i Temple, and Rosemary C v i t a n o v i c f o r t h e i r o u t s t a n d i n g work as r e s e a r c h a s s i s t a n t s i n t h e c o l l e c t i o n o f d a t a . S p e c i a l t h a n k s a r e due t o my f a m i l y , e s p e c i a l l y my p a r e n t s , D o r o t h y and R o b e r t , and a l s o t o my f r i e n d s and c o l l e a g u e s who were a c o n t i n u i n g s o u r c e o f encouragement, i d e a s , s u p p o r t , f u n , and f r i e n d s h i p . F i n a l l y , I am v e r y g r a t e f u l t o The K i d n e y F o u n d a t i o n o f Canada f o r f u n d i n g t h i s s t u d y w i t h an A l l i e d H e a l t h C o u n c i l r e s e a r c h g r a n t and s c h o l a r s h i p . 1 CHAPTER ONE I n t r o d u c t i o n Background t o t h e Problem T r a n s p l a n t a t i o n can improve l i f e b o t h i n q u a l i t y and q u a n t i t y b u t i t r a r e l y r e t u r n s a p a t i e n t t o f u l l y normal h e a l t h (Simmons & Simmons, 1972; Simmons, Kamstra-Hennen, & Thompson, 1981; F l e c h n e r , N o v i c k , Braun, Popowniak, & S t e i n m u l l e r , 1983; Evans e t a l . , 1985). A l t h o u g h k i d n e y t r a n s p l a n t a t i o n i s an e s t a b l i s h e d and h i g h l y s u c c e s s f u l t r e a t m e n t f o r end-stage r e n a l d i s e a s e (ESRD), t h e r e i s no guarantee t h a t any p a t i e n t ' s c l i n i c a l c o u r s e w i l l be f r e e o f r e j e c t i o n and o t h e r c o m p l i c a t i o n s ( H e a l y , 1987). T r a n s p l a n t a t i o n i s not a c u r a t i v e t r e a t m e n t f o r ESRD. R a t h e r , t h e p r o c e d u r e changes a f a t a l d i s e a s e f o r a c h r o n i c c o n d i t i o n w h i c h r e q u i r e s m e d i c a t i o n and o n going m e d i c a l a t t e n t i o n . S t r a u s s and c o l l e a g u e s (1984) have i d e n t i f i e d t h a t c o p i n g w i t h t h e u n c e r t a i n t y a s s o c i a t e d w i t h i l l n e s s and i t s t r e a t m e n t i s a major a s p e c t of work done by p a t i e n t s e x p e r i e n c i n g a c h r o n i c i l l n e s s . U n c e r t a i n t y i s a c e n t r a l c o n c e r n f o r c h r o n i c a l l y i l l p e r s o n s and has been i d e n t i f i e d as a major s o u r c e o f ' s t r e s s i n t h e i r l i v e s ( M i s h e l , 1984; M i s h e l , H o s t e t t e r , K i n g , & Graham, 1984). K i d n e y t r a n s p l a n t p a t i e n t s f a c e m u l t i p l e complex p h y s i o l o g i c a l and p s y c h o l o g i c a l s t r e s s o r s i n c l u d i n g l o n g - t e r m s u r v e i l l a n c e and t r e a t m e n t t o cope w i t h t h e c o n s t a n t t h r e a t o f r e j e c t i o n , changes i n body image due t o immunosuppressive d r u g s , t h e p s y c h o l o g i c a l a c c e p t a n c e of a body p a r t from a n o t h e r p e r s o n , changes i n s i g n i f i c a n t r e l a t i o n s h i p s , and t h e u n c e r t a i n t y o f 2 l o n g - t e r m p r o g n o s i s (Hayward e t a l . , - 1989; F r e y , 1990; Wh i t e , K e t e f i a n , S t a r r , V o p e l - L e w i s , 1990). I n a d d i t i o n , t h e r e i s always t h e t h r e a t o f ne e d i n g t o r e t u r n t o d i a l y s i s d e s p i t e t h e t i m e s i n c e t r a n s p l a n t and/or how w e l l t h e p a t i e n t f e e l s (Simmons, K l e i n , & Simmons, 1977). I n 1989, o f a l l ESRD p a t i e n t s i n Canada, 50.0% were a l i v e w i t h a f u n c t i o n i n g k i d n e y t r a n s p l a n t . Throughout t h e c o u n t r y t h e r e were 5,637 ESRD p a t i e n t s a l i v e w i t h a f u n c t i o n i n g k i d n e y t r a n s p l a n t i n 1989, an i n c r e a s e of 429 p a t i e n t s from 1988 (Canadian Organ Replacement R e g i s t e r , 1991). I n t h e p r o v i n c e o f B r i t i s h C o l u m b i a , 416 ESRD p a t i e n t s r e c e i v e d k i d n e y t r a n s p l a n t s between 1985 and 1988 (Brown, 1989). L i v i n g - r e l a t e d donor t r a n s p l a n t s a c c o u n t e d f o r 13.9% of t h e t r a n s p l a n t s p e r f o r m e d o v e r t h e l a s t 7 y e a r s i n Canada w i t h t h e remainder o f donors b e i n g c a d a v e r i c (Canadian Organ Replacement R e g i s t e r , 1991). D u r i n g t h e f i r s t y e a r f o l l o w i n g t h e t r a n s p l a n t , when t h e r i s k o f g r a f t r e j e c t i o n i s g r e a t e s t , p a t i e n t s a r e m o n i t o r e d a t f r e q u e n t i n t e r v a l s . As t i m e p r o g r e s s e s , l e s s f r e q u e n t m o n i t o r i n g i s r e q u i r e d . P h y s i o l o g i c a l r e j e c t i o n o f t h e t r a n s p l a n t e d k i d n e y c o n s t i t u t e s t h e major t h r e a t t o p r o l o n g e d g r a f t s u r v i v a l and a t no t i m e i s t h e r e c i p i e n t f r e e from t h e r i s k s of r e j e c t i o n ( M o r r i s , 1984). P r i o r t o t h e use o f c y c l o s p o r i n e , t h r e e y e a r p a t i e n t and g r a f t s u r v i v a l f o r c a d a v e r i c t r a n s p l a n t r e c i p i e n t s were 78% and 45% r e s p e c t i v e l y and f o r l i v i n g - r e l a t e d t r a n s p l a n t r e c i p i e n t s s u r v i v a l r a t e s were 95% and 67% ( K r a k a u e r , Grauman, McMullun & Creede, 1983). R e c i p i e n t s of c a d a v e r i c k i d n e y s can e x p e c t a one y e a r p a t i e n t s u r v i v a l r a t e o f 95% and a one y e a r 3 g r a f t s u r v i v a l r a t e of almost 80% when t r e a t e d w i t h c y c l o s p o r i n e ( J e f f e r y , H u t c h i n s o n , A r b u s , & Posen, 1986). One y e a r and f i v e y e a r s u r v i v a l r a t e s f o r f i r s t t i m e k i d n e y r e c i p i e n t s were 93.4% and 79.6% r e s p e c t i v e l y . G r a f t s u r v i v a l r a t e s f o r t h e same t i m e p e r i o d s were 78.0% and 60.9%. The r e s u l t s i n second t i m e g r a f t r e c i p i e n t s were s i m i l a r f o r p a t i e n t s u r v i v a l w i t h one and f i v e y e a r s u r v i v a l r a t e s o f 93.5% and 76.9%. However, g r a f t s u r v i v a l f o r second t i m e g r a f t r e c i p i e n t s was o n l y 63.9% a t one y e a r and 47.6% a t f i v e y e a r s (Canadian Organ Replacement R e g i s t e r , 1990). W h i l e i n f o r m a t i o n c o n c e r n i n g p a t i e n t and g r a f t s u r v i v a l a r e a v a i l a b l e t o t h o s e who have been t r a n s p l a n t e d , a p a t i e n t does not know i f and when h i s / h e r k i d n e y may r e j e c t . The u n p r e d i c t a b i l i t y i n t h e p a t i e n t ' s s i t u a t i o n i s l i k e l y t o g e n e r a t e p e r c e p t i o n s o f u n c e r t a i n t y . C l i n i c a l o b s e r v a t i o n s by t h i s r e s e a r c h e r i n d i c a t e t h a t some p a t i e n t s come t o a c c e p t t h e u n c e r t a i n t y o f t h e i r k i d n e y s i t u a t i o n where t h e y can f i n d a w o r k a b l e b a l a n c e between n e c e s s a r y c o n c e r n and t h e d i s a b l i n g f e a r o f t h e l o n g - t e r m p r o g n o s i s . O t h e r s have more d i f f i c u l t y , and t h e u n c e r t a i n t y seems t o i n t e r f e r e w i t h t h e i r a b i l i t y t o cope w i t h t h e i r k i d n e y s i t u a t i o n . There i s e v i d e n c e t o suggest t h a t k i d n e y t r a n s p l a n t p a t i e n t s e x p e r i e n c e c o n t i n u i n g s t r e s s , however s t r e s s o r s s p e c i f i c t o k i d n e y t r a n s p l a n t p a t i e n t s have not been a d d r e s s e d u n t i l r e c e n t l y . Nurse r e s e a r c h e r s had p r e v i o u s l y f o c u s e d on a s s e s s i n g t h e s t r e s s and c o p i n g o f h a e m o d i a l y s i s o r p e r i t o n e a l d i a l y s i s p a t i e n t s ( B a l d r e e , Murphy & Powers, 1982; B i h l , F e r r a n s , & Powers, 1982; E i c h e l , 1986; Fuchs & S c h r e i b e r , 1988; G u r k l i s & 4 Menke, 1988). O n l y one s t u d y has been found w h i c h a d d r e s s e d t h e s t r e s s o r s and c o p i n g s t r a t e g i e s used by l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s . That s t u d y , by S u t t o n and Murphy (1989), i n d i c a t e d t h a t p a t i e n t s a t t r i b u t e d c o s t f a c t o r s , f e a r o f k i d n e y r e j e c t i o n , and u n c e r t a i n t y c o n c e r n i n g t h e f u t u r e amongst t h e h i g h e s t r a n k e d s t r e s s o r s and t h e i r f i n d i n g s s u g g e s t e d t h a t k i d n e y p a t i e n t s may e x p e r i e n c e c o n t i n u i n g s t r e s s o r s o f moderate i n t e n s i t y as l o n g as f o u r y e a r s p o s t - t r a n s p l a n t . I n a r e c e n t s t u d y by Weems and P a t t e r s o n ( 1 989), l i v i n g w i t h t h e p e r v a s i v e u n c e r t a i n t y was found t o be a major c h a l l e n g e f o r p a t i e n t s a w a i t i n g a c a d a v e r i c k i d n e y t r a n s p l a n t and u n c e r t a i n t y was n o t e d t o be a f a c t o r c o n t r i b u t i n g t o t h e f e e l i n g s o f a m b i v a l e n c e , d i s a p p o i n t m e n t , v u l n e r a b i l i t y , and f e a r . P a t i e n t s were u n c e r t a i n about t h e a c t u a l e x p e r i e n c e o f t h e s u r g e r y and h o s p i t a l i z a t i o n , and t h e s h o r t and l o n g term outcomes o f t h e s u r g e r y . U n c e r t a i n t y was a l s o n o t e d t o be m a g n i f i e d and more d i s t r e s s f u l a t v a r i o u s t i m e s d u r i n g t h e w a i t such as when t h e p a t i e n t was f e e l i n g bad, when a f e l l o w d i a l y s i s p a t i e n t r e c e i v e d o r r e j e c t e d a k i d n e y , when a t e l e p h o n e c a l l c o n c e r n i n g an a v a i l a b l e k i d n e y was m i s s e d , and when t h e w a i t i n g p e r i o d became l e n g t h y . U n c e r t a i n t y i s known t o be a s s o c i a t e d w i t h i n c r e a s e d l e v e l s o f s t r e s s and t o impede c o p i n g w i t h s t r e s s f u l e v e n t s ( M i s h e l , 1981; 1984; S u l s & M u l l e n , 1981). S t u d i e s by p r e v i o u s i n v e s t i g a t o r s h i g h l i g h t s t h e s a l i e n c e o f u n c e r t a i n t y as a major s t r e s s o r f o r k i d n e y t r a n s p l a n t p a t i e n t s and t h a t c o p i n g s t r a t e g i e s a r e i n f l u e n c e d by a p p r a i s a l s o f u n c e r t a i n t y . I f 5 u n c e r t a i n t y i s a p p r a i s e d as a danger, t h e r e i s an e x p e c t a t i o n o f a h a r m f u l outcome r e s u l t i n g i n t h e i m p l e m e n t a t i o n o f c o p i n g s t r a t e g i e s t o reduce t h e u n c e r t a i n t y . On t h e o t h e r hand, i f u n c e r t a i n t y i s e v a l u a t e d t o be an o p p o r t u n i t y , a p o s i t i v e outcome i s i m p l i e d , and c o p i n g s t r a t e g i e s t o m a i n t a i n u n c e r t a i n t y a r e u t i l i z e d ( M i s h e l , 1990). However, l i t t l e has been done t o i n v e s t i g a t e t h e u n c e r t a i n t i e s of l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s and t h e c o p i n g s t r a t e g i e s t h a t t h e y use t o cope w i t h t h o s e u n c e r t a i n t i e s . Statement of t h e Problem P r e v i o u s s t u d i e s have i n d i c a t e d t h a t u n c e r t a i n t y i s a c e n t r a l i s s u e f o r ESRD p a t i e n t s who a r e r e c e n t k i d n e y t r a n s p l a n t r e c i p i e n t s . However, l i t t l e i s known about t h e degree and n a t u r e o f p e r c e i v e d u n c e r t a i n t y f o r p a t i e n t s i n a l o n g - t e r m t r a n s p l a n t s i t u a t i o n . W h i l e t h e r e a r e s t u d i e s w h i c h measured t h e c o p i n g s t r a t e g i e s used by ESRD p a t i e n t s u n d e r g o i n g d i a l y s i s , l o n g - t e r m t r a n s p l a n t p a t i e n t s have been s y s t e m a t i c a l l y e x c l u d e d from t h e s e s t u d i e s u n t i l r e c e n t l y . I n a d d i t i o n , t h e r e i s a p a u c i t y o f r e s e a r c h w h i c h has examined t h e r e l a t i o n s h i p between u n c e r t a i n t y and t h e c o p i n g s t r a t e g i e s l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s use t o manage t h e u n c e r t a i n t y i n t h e i r s i t u a t i o n . Purpose The purpose of t h i s s t u d y was t o d e s c r i b e t h e u n c e r t a i n t y p e r c e i v e d , t h e s p e c i f i c c o p i n g s t r a t e g i e s employed, and t h e r e l a t i o n s h i p between u n c e r t a i n t y and c o p i n g s t r a t e g i e s i n l o n g -t e r m k i d n e y t r a n s p l a n t p a t i e n t s . F o r t h e purposes of t h i s s t u d y , t h e t i m e p e r i o d o f t h r e e 6 and more y e a r s s i n c e k i d n e y t r a n s p l a n t was chosen t o d e f i n e l o n g -t e r m p a t i e n t s t a t u s because t h i s t i m e frame u s u a l l y r e p r e s e n t s a r e l a t i v e l y s t a b l e p e r i o d p o s t - t r a n s p l a n t . T h e o r e t i c a l Framework The t h e o r y of s t r e s s and c o p i n g d e v e l o p e d by L a z a r u s and Folkman (1984) p r o v i d e d t h e t h e o r e t i c a l framework f o r t h i s s t u d y ( F i g u r e 1 ) . T h i s t h e o r y a d d r e s s e s t h e o n g o i n g , r e c i p r o c a l r e l a t i o n s h i p between a p e r s o n , such as a l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t , and h i s o r her environment. P e r s o n and s i t u a t i o n f a c t o r s i n f l u e n c e t h e c o g n i t i v e a p p r a i s a l p r o c e s s . A c c o r d i n g t o t h i s model, t h i s r e l a t i o n s h i p i s r e f e r r e d t o as a t r a n s a c t i o n , i n i t i a t e d by a p o t e n t i a l l y s t r e s s f u l e v e n t . T h i s r e l a t i o n s h i p i s mediated by t h e p r o c e s s e s of c o g n i t i v e a p p r a i s a l and c o p i n g . I n t h e c o g n i t i v e a p p r a i s a l p r o c e s s , an i n d i v i d u a l e v a l u a t e s t h e s i g n i f i c a n c e o f what i s happening i n t h e e n vironment w i t h r e s p e c t t o i t s s i g n i f i c a n c e f o r w e l l - b e i n g and what c o p i n g r e s o u r c e s a r e a v a i l a b l e . As a r e s u l t o f a p p r a i s a l p r o c e s s e s , an i n d i v i d u a l d e t e r m i n e s what c o p i n g s t r a t e g i e s w i l l be used w h i c h u l t i m a t e l y i n f l u e n c e outcomes. R e a p p r a i s a l i s a change i n t h e o r i g i n a l a p p r a i s a l due t o c h a n g i n g c o n d i t i o n s i n t h e p e r s o n and/or s i t u a t i o n . C o g n i t i v e A p p r a i s a l C o g n i t i v e a p p r a i s a l i s t h e p r o c e s s of e v a l u a t i n g t h e meaning and s i g n i f i c a n c e o f a person-environment t r a n s a c t i o n . There a r e two components t o c o g n i t i v e a p p r a i s a l : p r i m a r y a p p r a i s a l and s e c o n d a r y a p p r a i s a l . 7 PERSON«-commitments b e l i e f s REAPPRAISAL -•SITUATION l o n g - t e r m k i d n e y t r a n s p l a n t COGNITIVE APPRAISAL ( u n c e r t a i n t y ) P r i m a r y A p p r a i s a l (what i s a t s t a k e ) I r r e l e v a n t S t r e s s f u l B e n i g n / p o s i t i v e Harm/loss T h r e a t C h a l l e n g e Secondary A p p r a i s a l ( c o p i n g o p t i o n s ) COPING CONSTRAINTS RESOURCES AGAINST COPING • • -•COPING —•OUTCOMES STRATEGIES F i g u r e 1. T h e o r e t i c a l framework f o r u n c e r t a i n t y and c o p i n g s t r a t e g i e s i n l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s , Note. Adapted from The R e l a t i o n s h i p o f U n c e r t a i n t y , C o n t r o l , Commitment, and T h r e a t o f R e c u r r e n c e t o Copi n g S t r a t e g i e s Used by Women w i t h B r e a s t Cancer (p.40) by B. A. H i l t o n , 1989. J o u r n a l o f  B e h a v i o u r i a l M e d i c i n e , 1 2 ( 1 ) . 8 P r i m a r y a p p r a i s a l i s an e v a l u a t i o n o f whether a n y t h i n g i s a t s t a k e i n t h e e n c o u n t e r t o g e t h e r w i t h a judgement o f whether t h e t r a n s a c t i o n i s i r r e l e v a n t , b e n i g n - p o s i t i v e , o r s t r e s s f u l . A c c o r d i n g t o t h i s t h e o r y , s t r e s s f u l a p p r a i s a l s r e s u l t when h a r m / l o s s , t h r e a t , o r c h a l l e n g e i s p e r c e i v e d . Harm/loss r e f e r s t o damage t h a t has a l r e a d y t a k e n p l a c e ; t h r e a t r e f e r s t o an a n t i c i p a t e d o r f u t u r e harm; and c h a l l e n g e / o p p o r t u n i t y , where t h e f o c u s i s p l a c e d p o s i t i v e l y on p o t e n t i a l g a i n , m a s t e r y , o r growth. Secondary a p p r a i s a l i s a complex e v a l u a t i v e p r o c e s s where t h e p e r s o n must t a k e i n t o account which c o p i n g o p t i o n s a r e a v a i l a b l e , t h e l i k e l i h o o d t h a t a g i v e n c o p i n g o p t i o n w i l l a c c o m p l i s h what i t i s suppose t o do, and t h e l i k e l i h o o d t h a t one can a p p l y a p a r t i c u l a r s t r a t e g y ( o r s t r a t e g i e s ) e f f e c t i v e l y . L a z a r u s and Folkman (1984) s u g g e s t t h a t p r i m a r y and s e c o n d a r y a p p r a i s a l a r e i n t e r d e p e n d e n t and do not n e c e s s a r i l y o c c u r i n sequence. I n t h i s t h e o r y , p e r s o n f a c t o r s a r e i m p o r t a n t d e t e r m i n a n t s o f c o g n i t i v e a p p r a i s a l . The most i m p o r t a n t p e r s o n f a c t o r s a f f e c t i n g c o g n i t i v e a p p r a i s a l a r e commitments and b e l i e f s . These p e r s o n f a c t o r s i n t e r a c t t o shape t h e pe r s o n ' s u n d e r s t a n d i n g o f t h e s i t u a t i o n . When i n f o r m a t i o n n e c e s s a r y f o r c o g n i t i v e a p p r a i s a l i s u n c l e a r o r i n s u f f i c i e n t , a s t a t e o f u n c e r t a i n t y i s e x p e r i e n c e d . L a z a r u s and Folkman (1984) note t h e d u a l n a t u r e o f u n c e r t a i n t y . On t h e one hand, u n c e r t a i n t y r e s u l t s from t h e c o g n i t i v e a p p r a i s a l o f t h e s i t u a t i o n as t h r e a t e n i n g due t o t h e i n d i v i d u a l ' s i n a b i l i t y t o f o r m u l a t e a 9 c l e a r i d e a o f what i s g o i n g t o happen. However, u n c e r t a i n t y may a l s o a l l e v i a t e t h r e a t by a l l o w i n g an a l t e r n a t i v e t o t h e meaning of t h e s i t u a t i o n . C o p i n g S t r a t e g i e s Based upon t h e c o g n i t i v e a p p r a i s a l p r o c e s s , t h e i n d i v i d u a l s e l e c t s p a r t i c u l a r c o p i n g s t r a t e g i e s t o manage t h e demands o f t h e s i t u a t i o n . C o ping s t r a t e g i e s a r e e f f o r t s t h a t t h e i n d i v i d u a l g e n e r a t e s as a r e s u l t of c o g n i t i v e a p p r a i s a l s i n o r d e r t o change the meaning of t h e s i t u a t i o n o r t o m o d i f y t h e e nvironment. L a z a r u s and Folkman (1984) d e f i n e c o p i n g as t h e " c o n s t a n t l y c h a n g i n g c o g n i t i v e and b e h a v i o r a l e f f o r t s t o manage s p e c i f i c e x t e r n a l and/or i n t e r n a l demands t h a t a r e a p p r a i s e d as t a x i n g o r e x c e e d i n g th e r e s o u r c e s o f t h e p e r s o n " (p. 141). C o p i n g depends on t h e r e s o u r c e s a v a i l a b l e t o t h e p e r s o n and t h e c o n s t r a i n t s t h a t impede i t . These r e s o u r c e s i n c l u d e h e a l t h and energy; e x i s t e n t i a l b e l i e f s and commitments t h a t have a m o t i v a t i o n a l p r o p e r t y t h a t can h e l p o r s u s t a i n c o p i n g ; problem s o l v i n g s k i l l s ; s o c i a l s k i l l s ; s o c i a l s u p p o r t ; and m a t e r i a l r e s o u r c e s . A c c o r d i n g t o t h i s t h e o r y , c o p i n g s e r v e s two o v e r a l l f u n c t i o n s : p r o b l e m - f o c u s e d c o p i n g manages o r a l t e r s t h e t h r e a t i t s e l f o r o b s t a c l e s w i t h i n t h e environment and/or p e r s o n ; and, e m o t i o n - f o c u s e d c o p i n g s e r v e s a p a l l i a t i v e f u n c t i o n a t t e m p t i n g t o h a n d l e o r r e g u l a t e t h e d i s t r e s s i n g e m o t i o n a l r e s p o n s e s r e l a t e d t o t h e s i t u a t i o n . R e a p p r a i s a l R e a p p r a i s a l r e f e r s t o a changed a p p r a i s a l based on t h e 10 e f f e c t i v e n e s s o f t h e i n t e r a c t i o n between t h e chosen c o p i n g r e s o u r c e and t h e environment i n d e a l i n g w i t h t h e e v e n t . L a z a r u s and Folkman (1984) d e s c r i b e r e a p p r a i s a l as an o n g o i n g p r o c e s s w h i c h s e r v e s as t h e b a s i s f o r f u r t h e r c o p i n g . Summary A c c o r d i n g t o L a z a r u s and Folkman's t h e o r y , u n c e r t a i n t y r e s u l t s from c o g n i t i v e a p p r a i s a l s . U n c e r t a i n t y may be a p p r a i s e d as a t h r e a t o r as a c h a l l e n g e / o p p o r t u n i t y . Based upon t h e a p p r a i s a l of u n c e r t a i n t y , c o p i n g s t r a t e g i e s a r e implemented by t h e i n d i v i d u a l . T h i s c o g n i t i v e model l i n k s a p p r a i s a l s o f u n c e r t a i n t y t o t h e p r o b l e m - f o c u s e d and emo t i o n -f o c u s e d c o p i n g s t r a t e g i e s used t o manage t h e s i t u a t i o n . The p r e s e n t s t u d y was d e s i g n e d t o e x p l o r e p e r c e i v e d u n c e r t a i n t y and c o p i n g s t r a t e g i e s and t o d e s c r i b e t h e r e l a t i o n s h i p between u n c e r t a i n t y and c o p i n g s t r a t e g i e s used by l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s . R e search Q u e s t i o n s The f o l l o w i n g r e s e a r c h q u e s t i o n s g u i d e d t h e s t u d y . F o r t h e l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t : 1. What i s t h e l e v e l and n a t u r e o f p e r c e i v e d u n c e r t a i n t y ? 2. What a r e t h e c o p i n g s t r a t e g i e s used? 3. What i s t h e r e l a t i o n s h i p between u n c e r t a i n t y and t h e c o p i n g s t r a t e g i e s used? D e f i n i t i o n o f Terms  C o p i n g s t r a t e g i e s : t h e c o n s t a n t l y c h a n g i n g c o g n i t i v e and b e h a v i o u r a l e f f o r t s t o manage s p e c i f i c e x t e r n a l and/or i n t e r n a l demands t h a t a r e a p p r a i s e d as t a x i n g o r e x c e e d i n g t h e r e s o u r c e s o f t h e p e r s o n . ( L a z a r u s & Folkman, 1984). I n t h i s s t u d y , c o p i n g s t r a t e g i e s were measured by t h e r e v i s e d J a l o w i e c C o p i n g S c a l e (JCS) (Appendix A ) . P r o b l e m - f o c u s e d c o p i n g s t r a t e g i e s : e f f o r t s t o d e a l w i t h t h e t h r e a t i t s e l f , o r w i t h t h e o b s t a c l e s p r e s e n t i n t h e environment o r i n o n e s e l f . These s t r a t e g i e s s e r v e a problem-s o l v i n g f u n c t i o n . E m o t i o n - f o c u s e d c o p i n g s t r a t e g i e s : e f f o r t s used t o at t e m p t t o manage s t r e s s f u l emotions caused by t h e s i t u a t i o n and t o r e g u l a t e t h e e m o t i o n a l d i s t r e s s , t h u s s e r v i n g a p a l l i a t i v e f u n c t i o n . G r a f t : a h e a l t h y k i d n e y t h a t i s removed from one p e r s o n and t r a n s p l a n t e d t o a n o t h e r i n d i v i d u a l ( M a r t i n , 1988). K i d n e y t r a n s p l a n t : a p r o c e d u r e whereby t h e n o n f u n c t i o n i n g k i d n e y s o f an i n d i v i d u a l a r e removed s u r g i c a l l y and r e p l a c e d w i t h a s i n g l e h e a l t h y k i d n e y . The t r a n s p l a n t e d k i d n e y i s donated e i t h e r by a l i v i n g donor (LD) o r by a p e r s o n who d i e d ( c a d a v e r i c ) (Ruth, W y s z e w i a n s k i , & C a m p b e l l , 1987). Long-term k i d n e y t r a n s p l a n t p a t i e n t : an a d u l t who has been t r a n s p l a n t e d f o r t h r e e o r more y e a r s . U n c e r t a i n t y : t h e i n a b i l i t y t o d e t e r m i n e t h e meaning o f i l l n e s s r e l a t e d e v e n t s . I t i s t h e c o g n i t i v e s t a t e c r e a t e d when t h e p e r s o n cannot a d e q u a t e l y s t r u c t u r e o r c a t e g o r i z e an e v e n t because o f a l a c k o f s u f f i c i e n t cues. The d e c i s i o n - m a k e r i s u n a b l e t o a s s i g n d e f i n i t e v a l u e t o e v e n t s and/or i s u n a b l e t o p r e d i c t outcomes a c c u r a t e l y ( M i s h e l , 1984). I n t h i s s t u d y , u n c e r t a i n t y was measured by t h e U n c e r t a i n t y S t r e s s S c a l e (USS) d e v e l o p e d by H i l t o n (Appendix B) . S i g n i f i c a n c e of t h e Study There i s e v i d e n c e t o suggest t h a t u n c e r t a i n t y i s a c e n t r a l c o n c e r n f o r ESRD p a t i e n t s r e g a r d l e s s o f t r e a t m e n t m o d a l i t y . T h i s s t u d y r e p r e s e n t s an i n i t i a l e x p l o r a t i o n i n t o t h e l e v e l and n a t u r e o f u n c e r t a i n t y and t h e c o p i n g s t r a t e g i e s used by k i d n e y p a t i e n t s who a r e t h r e e and more y e a r s p o s t -t r a n s p l a n t u s i n g t o t a l s a m p l i n g . S i n c e some u n c e r t a i n t y may be amenable t o i n t e r v e n t i o n , s t u d y i n g p e r c e p t i o n s o f u n c e r t a i n t y and l i n k i n g u n c e r t a i n t y and c o p i n g s t r a t e g i e s i s i m p o r t a n t . Because t h e p e r s p e c t i v e o f k i d n e y t r a n s p l a n t p a t i e n t s t h e m s e l v e s has r e c e i v e d l i t t l e a t t e n t i o n i n t h e p a s t , t h e s t u d y may p r o v i d e new i n f o r m a t i o n from t h e i r p e r s p e c t i v e . The f i n d i n g s from t h i s s t u d y w i l l p r o v i d e a b e t t e r u n d e r s t a n d i n g o f t h e degree and n a t u r e of u n c e r t a i n t y e x p e r i e n c e d by l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s . I n a d d i t i o n , t h e f i n d i n g s w i l l a l s o p r o v i d e an a c c u r a t e p i c t u r e o f how p e o p l e a c t u a l l y do cope w i t h t h e s t r e s s e s o f u n c e r t a i n t y i n t h e i r d a i l y l i v e s . Nurses need t o have a g r e a t e r knowledge o f u n c e r t a i n t y i n o r d e r t o r e c o g n i z e u n c e r t a i n t y i n k i d n e y t r a n s p l a n t p a t i e n t s and h e l p them t o manage t h e i r u n c e r t a i n t y t h r o u g h i d e n t i f i c a t i o n o f t h e s o u r c e ( s ) o f u n c e r t a i n t y . And where u n c e r t a i n t y i s e i t h e r u n a v o i d a b l e o r p r e f e r a b l e t o c e r t a i n t y , n u r s e s can a s s i s t p a t i e n t s t o reduce t h e s t r e s s e s o f l i v i n g w i t h u n c e r t a i n t y . W i t h a s t r o n g e r knowledge base t h a t can be a p p l i e d i n c l i n i c a l p r a c t i c e , n u r s e s and o t h e r h e a l t h c a r e p r a c t i t i o n e r s a r e t h e r e f o r e i n a b e t t e r p o s i t i o n t o p r o v i d e p a t i e n t c o u n s e l l i n g and d e v e l o p i n t e r v e n t i o n s t o a s s i s t k i d n e y t r a n s p l a n t p a t i e n t s cope more e f f e c t i v e l y w i t h t h e i r u n c e r t a i n t i e s . I n a d d i t i o n , i t i s t h e aim o f t h i s r e s e a r c h e r t o make a c o n t r i b u t i o n t o t h e body o f n u r s i n g knowledge c o n c e r n i n g u n c e r t a i n t y and c o p i n g . To d a t e , t h e r e i s a p a u c i t y of r e s e a r c h w h i c h l i n k s u n c e r t a i n t y t o c o p i n g s t r a t e g i e s i n l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s . As an i n i t i a l r e s e a r c h endeavour, t h i s s t u d y w i l l make i t p o s s i b l e t o suggest a d d i t i o n a l a r e a s f o r f u r t h e r n e p h r o l o g y n u r s i n g r e s e a r c h t h a t a d d r e s s t h e h e a l t h c a r e c o n c e r n s of t h i s unique p o p u l a t i o n . O r g a n i z a t i o n o f T h e s i s C o n t e n t T h i s t h e s i s i s co m p r i s e d o f f i v e c h a p t e r s . I n C h a p t e r One, t h e background t o t h e problem, problem s t a t e m e n t , p u r p o s e , t h e o r e t i c a l framework, r e s e a r c h q u e s t i o n s , d e f i n i t i o n s , and t h e s i g n i f i c a n c e of t h e s t u d y were i n t r o d u c e d . I n Cha p t e r Two, a r e v i e w o f s e l e c t e d l i t e r a t u r e w i l l be p r e s e n t e d under two major c o n c e p t s a c c o r d i n g t o t h e t h e o r e t i c a l framework: (1) u n c e r t a i n t y i n c h r o n i c i l l n e s s and (2) c o p i n g s t r a t e g i e s and t h e r e l a t i o n s h i p o f u n c e r t a i n t y and c o p i n g s t r a t e g i e s . I n Chapter Three, a d e s c r i p t i o n o f t h e r e s e a r c h methods used i n t h e s t u d y , i n c l u d i n g t h e r e s e a r c h d e s i g n , s a m p l i n g p r o c e d u r e , d a t a c o l l e c t i o n i n s t r u m e n t s and p r o c e d u r e s , e t h i c a l c o n s i d e r a t i o n s , and d a t a a n a l y s i s w i l l be a d d r e s s e d . I n Cha p t e r F o u r , a d e s c r i p t i o n and d i s c u s s i o n o f t h e s t u d y sample and t h e r e s e a r c h f i n d i n g s w i l l be p r e s e n t e d . 14 F i n a l l y , t h e summary, c o n c l u s i o n s , i m p l i c a t i o n s f o r n u r s i n g p r a c t i c e , and recommendations f o r f u r t h e r r e s e a r c h w i l l be p r e s e n t e d i n C h a p t e r F i v e . CHAPTER TWO Review o f S e l e c t e d L i t e r a t u r e I n t r o d u c t i o n I n t h i s c h a p t e r , a r e v i e w o f s e l e c t e d l i t e r a t u r e w i l l be p r e s e n t e d i n r e l a t i o n t o t h e two major c o n c e p t s under s t u d y a c c o r d i n g t o t h e t h e o r e t i c a l framework. The l i t e r a t u r e r e v i e w i s o r g a n i z e d i n t o two s e c t i o n s . I n t h e f i r s t s e c t i o n , l i t e r a t u r e a d d r e s s i n g t h e co n c e p t o f u n c e r t a i n t y and t h e a p p r a i s a l o f u n c e r t a i n t y i n c h r o n i c i l l n e s s w i l l be p r e s e n t e d . S i n c e t h e r e i s l i t t l e i n f o r m a t i o n t h a t e x p l o r e s how l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s e x p e r i e n c e u n c e r t a i n t y , l i t e r a t u r e a d d r e s s i n g u n c e r t a i n t y i n c o n d i t i o n s o t h e r t h a n k i d n e y d i s o r d e r s w i l l a l s o be p r e s e n t e d . F o l l o w i n g t h i s , i n t h e second s e c t i o n , l i t e r a t u r e a d d r e s s i n g c o p i n g s t r a t e g i e s and t h e r e l a t i o n s h i p between u n c e r t a i n t y and c o p i n g s t r a t e g i e s w i l l be p r e s e n t e d . U n c e r t a i n t y The l i t e r a t u r e c o n c e r n i n g u n c e r t a i n t y w i l l be approached by p r e s e n t i n g a r e v i e w of t h e o r e t i c a l , a n e c d o t a l , and r e s e a r c h m a t e r i a l w h i c h d e s c r i b e s t h e concept o f u n c e r t a i n t y f o r p a t i e n t s , f o l l o w e d by t h e s i g n i f i c a n c e of u n c e r t a i n t y as e x p e r i e n c e d by p a t i e n t s i n v a r i o u s c h r o n i c i l l n e s s s i t u a t i o n s . The Concept o f U n c e r t a i n t y U n c e r t a i n t y i s a c o g n i t i v e s t a t e t h a t i s c r e a t e d when an e v e n t cannot be a d e q u a t e l y d e f i n e d o r c a t e g o r i z e d because s u f f i c i e n t cues a r e l a c k i n g (Budner, 1962). U n c e r t a i n t y a r i s e s when t h e p e r s o n i s u n a b l e t o a s s i g n d e f i n i t e meaning t o an ev e n t o r s i t u a t i o n , and/or i s unable t o a c c u r a t e l y p r e d i c t outcomes ( M i s h e l , 1984). U n c e r t a i n t y i s a judgement about an ev e n t o r s i t u a t i o n . A s i t u a t i o n i s judged as u n c e r t a i n when cues a r e l a c k i n g and t h e s i t u a t i o n i s open t o m u l t i p l e meanings ( M i s h e l , 1984). When s u f f i c i e n t cues a r e l a c k i n g , a c o g n i t i v e s t r u c t u r e i s n o t formed and t h e person's a b i l i t y t o a d e q u a t e l y a p p r a i s e t h e s i t u a t i o n and choose a p p r o p r i a t e a c t i o n i s l i m i t e d ( M i s h e l , 1984). U n c e r t a i n t y r e g a r d i n g what w i l l happen, when t h e consequences o f an event w i l l o c c u r , and what t h e ev e n t means a r e i m p o r t a n t t o a p e r s o n w i t h any i l l n e s s ( M i s h e l , 1988). Thus, judgements made under c o n d i t i o n s o f u n c e r t a i n t y and managing t h e u n c e r t a i n t y a s s o c i a t e d w i t h an i l l n e s s and i t s t h e r a p y a r e p a r t i c u l a r l y r e l e v a n t f o r l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s . Folkman, S c h a e f e r , and L a z a r u s (1979) c o n c e p t u a l i z e d u n c e r t a i n t y as a r i s i n g from ambiguous f a c t o r s w i t h i n t h e s i t u a t i o n and from f a c t o r s w i t h i n t h e p e r s o n such as one's own d i s t i n c t i v e agenda, b e l i e f s , and a b i l i t i e s . They f u r t h e r d e l i n e a t e f o u r t y p e s o f u n c e r t a i n t y : e v e n t , t e m p o r a l , outcome, and c o n t r o l . Event u n c e r t a i n t y o c c u r s when t h e t i m e o f t h e event i s known but t h e p o s s i b i l i t y of i t s o c c u r r e n c e v a r i e s , whereas t e m p o r a l u n c e r t a i n t y o c c u r s when t h e ti m e o f t h e event i s unknown. Outcome u n c e r t a i n t y o c c u r s when t h e p e r s o n does n ot know what w i l l . h a p p e n , and c o n t r o l u n c e r t a i n t y o c c u r s when t h e p e r s o n i s not c e r t a i n i f t h e event can be c o n t r o l l e d . Three t y p e s o f u n c e r t a i n t y have been i n v e s t i g a t e d i n t h e l a b o r a t o r y : c o n t r o l ( P e r v i n , 1963); event (Monet, A v r i l l , & L a z a r u s , 1972), and t e m p o r a l (Monat, 1976). L a b o r a t o r y s t u d i e s o f e v e n t u n c e r t a i n t y i n humans u s u a l l y examined t h e e f f e c t s o f v a r i o u s l e v e l s o f c e r t a i n t y on p s y c h o p h y s i o l o g i c a l i n d i c a t o r s o f a r o u s a l , u s i n g a c t u a l p r o b a b i l i t y l e v e l s o f a n o x i o u s c o n d i t i o n such as e l e c t r i c shock as t h e i n d e x of c e r t a i n t y . O v e r a l l , work i n t h e l a b o r a t o r y i n d i c a t e d t h a t u n c e r t a i n t y i s an a v e r s i v e e x p e r i e n c e f o r p ersons o r i e n t e d toward t h e enhancement of p r e d i c t a b i l i t y and c o n t r o l . L a z a r u s and Folkman (1984) n o t e t h a t r e a l l i f e e v e n t s a r e i n f i n i t e l y more m e a n i n g f u l t h a n l a b o r a t o r y s t r e s s o r s . Event u n c e r t a i n t y i n r e a l l i f e has a much g r e a t e r p o t e n t i a l f o r c r e a t i n g p s y c h o l o g i c a l s t r e s s t h a n i t s c o u n t e r p a r t s i n t h e l a b o r a t o r y . I n a d d i t i o n , most r e a l l i f e e v e n t s a r e much more complex t h a n l a b o r a t o r y e v e n t s ; t h e r e a r e more f a c e t s t o t h e e n v i r o n m e n t a l c o n f i g u r a t i o n t h a t have t o be e v a l u a t e d . F u r t h e r m o r e , t h e r e l i a b i l i t y o r a p p l i c a b i l i t y o f odds t h a t a r e g i v e n about t h e o c c u r r e n c e o f an event a r e o f t e n q u e s t i o n a b l e . U n c e r t a i n l y has been w i d e l y noted i n t h e c o n t e x t o f p h y s i c a l i l l n e s s and d i s a b i l i t y ( L a z a r u s & Folkman, 1984; M i s h e l , 1984; M i s h e l , 1988; Moos, 1977; Moos & Tsu, 1977). F o r a p e r s o n e x p e r i e n c i n g an i l l n e s s , M i s h e l (1988) s t a t e s t h a t u n c e r t a i n t y has f o u r forms: "(a) a m b i g u i t y c o n c e r n i n g t h e s t a t e o f t h e i l l n e s s , (b) c o m p l e x i t y r e g a r d i n g t r e a t m e n t and system o f c a r e , (c) l a c k o f i n f o r m a t i o n about t h e d i a g n o s i s and s e r i o u s n e s s o f t h e i l l n e s s , and (d) u n p r e d i c t a b i l i t y of t h e c o u r s e of t h e d i s e a s e and p r o g n o s i s " (p. 225). M i s h e l (1984) proposed a s t r u c t u r a l model t o e x p l a i n t h e s t r e s s r e s u l t i n g from h o s p i t a l i z a t i o n f o r a m e d i c a l c o n d i t i o n . P e r c e i v e d u n c e r t a i n t y about t r e a t m e n t , symptoms, and outcomes was examined as a major p r e d i c t o r o f s t r e s s . U n c e r t a i n t y a l s o had 18 t h e p r e d i c t e d m e d i a t i n g r o l e between s e r i o u s n e s s o f i l l n e s s and s t r e s s . The o n l y o t h e r v a r i a b l e s u p p o r t i n g t h e p r o posed model was age w h i c h r e l a t e d i n v e r s e l y t o s t r e s s . O t her r e s e a r c h e r s have a l s o c i t e d t h e u n c e r t a i n t y o f e v e n t s as a major s o u r c e of h o s p i t a l - r e l a t e d s t r e s s . H a c k e t t and Cassem (1975) found t h a t p a t i e n t s r a t e d t h e u n f a m i l i a r i t y o f s u r r o u n d i n g s and t h e l a c k of i n f o r m a t i o n about m e c h a n i c a l d e v i s e s as t h e most s t r e s s f u l d u r i n g h o s p i t a l i z a t i o n . F o r p a t i e n t s a d m i t t e d t o a c o r o n a r y c a r e u n i t , D a v i s (1960) d e s c r i b e d t h e i r u n c e r t a i n t y w h i c h i n c l u d e d not knowing one's d i a g n o s i s o r i t s s e r i o u s n e s s , a n t i c i p a t i n g p a i n and d i s c o m f o r t as a r e s u l t o f t r e a t m e n t , and b e i n g u n a b l e t o p r e d i c t t h e o c c u r r e n c e o r i n t e n s i t y of t h e a n t i c i p a t e d d i s c o m f o r t . I n a d d i t i o n , a n o t h e r s t r e s s f u l a r e a f o r p a t i e n t s was t o u n d e r s t a n d t h e language ( j a r g o n ) used by m e d i c a l s t a f f . I t seemed t h a t language impeded c l e a r communication and l i m i t e d t h e p a t i e n t s ' comprehension of e v e n t s . Under c o n d i t i o n s o f u n c e r t a i n t y , t h e r e i s g r e a t p o t e n t i a l f o r d i v e r s e e v a l u a t i o n s and outcomes because t h e s i t u a t i o n l a c k s form o r s t r u c t u r e , thus l e a v i n g t h e s i t u a t i o n open t o m u l t i p l e i n t e r p r e t a t i o n s . A c c o r d i n g t o t h e s t r e s s and c o p i n g t h e o r y , u n c e r t a i n t y r e s u l t s from c o g n i t i v e a p p r a i s a l s . The c o g n i t i v e a p p r a i s a l p r o c e s s d e t e r m i n e s whether t h e event i s p e r c e i v e d as s t r e s s f u l o r b e n i g n . As L a z a r u s and Folkman (1984) p r e d i c t , s t r e s s f u l a p p r a i s a l s i n c l u d e h a r m / l o s s , t h r e a t , and c h a l l e n g e ( o p p o r t u n i t y ) . T h r e a t concerns harms o r l o s s e s t h a t have not y e t t a k e n p l a c e but a r e a n t i c i p a t e d . When a harm/loss has o c c u r r e d , i t i s always f u s e d w i t h t h r e a t because e v e r y l o s s has t h e p o t e n t i a l f o r n e g a t i v e i m p l i c a t i o n s f o r t h e f u t u r e . W h i l e t h r e a t f o c u s e s on t h e n e g a t i v e , c h a l l e n g e a p p r a i s a l s f o c u s on t h e p o t e n t i a l f o r mastery o r g a i n and a r e more l i k e l y t o o c c u r when t h e p e r s o n has a sense of c o n t r o l o v e r t h e t r o u b l e d p e r s o n environment r e l a t i o n s h i p . Because t h e r e i s t h e p o t e n t i a l f o r many d i v e r s e e v a l u a t i o n s about t h e e n c o u n t e r , u n c e r t a i n t y can be r e c o g n i z e d as a danger o r as an o p p o r t u n i t y ( M i s h e l , 1984; L a z a r u s & Folkman, 1984). Thus, t h e p o s s i b i l i t y o f i t s b e i n g e v a l u a t e d as p o s i t i v e o r n e g a t i v e emerges. U n c e r t a i n t y has been a s s o c i a t e d w i t h a p e s s i m i s t i c o u t l o o k and n e g a t i v e e v a l u a t i o n of t h e f u t u r e i n p a t i e n t s newly d i a g n o s e d w i t h g y n a e c o l o g i c a l c a n c e r ( M i s h e l e t a l . , 1984). However, when u n c e r t a i n t y i s c o n s i d e r e d as an o p p o r t u n i t y , t h e p o s s i b i l i t y o f a p o s i t i v e outcome i s t h e r e s u l t o f t h e a p p r a i s a l . V i e w i n g u n c e r t a i n t y as an o p p o r t u n i t y r e q u i r e s p r e o c c u p a t i o n w i t h t h e p o s i t i v e r a t h e r t h a n t h e n e g a t i v e ( M i s h e l , 1988). Folkman e t a l . (1979) s u g g e s t e d t h a t p a t i e n t s may d e s i r e t o remain i n a s t a t e o f u n c e r t a i n t y s i n c e i t p e r m i t s t h e maintenance o f hope. S i g n i f i c a n c e o f U n c e r t a i n t y i n C h r o n i c I l l n e s s The e x p e r i e n c e o f c h r o n i c i l l n e s s i n v o l v e s l i v i n g w i t h one o r more d i s e a s e s t h a t a r e l o n g - t e r m , not c u r a b l e , and/or have r e s i d u a l f e a t u r e s , i m p o s i n g l i m i t a t i o n s on an i n d i v i d u a l ' s f u n c t i o n i n g (Dimond & Jo n e s , 1983). P a t i e n t s w i t h c h r o n i c i l l n e s s a l s o have more l o n g - t e r m concerns about t h e i r f u t u r e , t h e l o s s o f t h e i r customary s o c i a l r o l e s , m a i n t a i n i n g t h e i r s e l f esteem, and t h e i r need t o d e v e l o p a new l i f e s t y l e (Abram, 1972). 20 I n l i v i n g w i t h a c h r o n i c i l l n e s s , i n d i v i d u a l s e x p e r i e n c e demands g e n e r a t e d by t h e d i r e c t e f f e c t s o f t h e d i s e a s e and i t s t r e a t m e n t . S p e c i f i c a l l y , demands a r e t h e e v e n t s o r e x p e r i e n c e s t h a t i n d i v i d u a l s a t t r i b u t e t o t h e i l l n e s s t h a t may t a x one's p e r s o n a l and s o c i a l r e s o u r c e s . A l t h o u g h i n d i v i d u a l s e x p e r i e n c e d i f f e r e n t demands of i l l n e s s i n d i f f e r e n t phases of t h e i l l n e s s , demands such as u n c e r t a i n t y about t h e consequences o f t h e i l l n e s s r emains f a i r l y c o n s t a n t ( M i s h e l , 1990). W h i l e u n c e r t a i n t y t h e o r y e x p l a i n s how p a t i e n t s c o g n i t i v e p r o c e s s i l l n e s s - r e l a t e d s t i m u l i and how t h e y s t r u c t u r e meaning f o r t h o s e e v e n t s , t h e t h e o r y d i d not a d d ress t h e e x p e r i e n c e o f l i v i n g w i t h c o n t i n u a l , c o n s t a n t u n c e r t a i n t y i n c h r o n i c i l l n e s s . A f t e r M i s h e l (1990) examined t h e c u l t u r a l a t t i t u d e toward t h e e x p e r i e n c e o f u n c e r t a i n t y , i t was a p p arent t h a t t h e p r e s e n t c o n c e p t u a l i z a t i o n o f u n c e r t a i n t y r e f l e c t e d c u l t u r a l b i a s e s f o r a p r e f e r e n c e o f c e r t a i n t y and v a l u e s such as p r e d i c t a b i l i t y , c o n t r o l , and m astery as t h e n a t u r a l and normal way o f l i f e . M a j o r s o c i a l v a l u e s such as p r e d i c t a b i l i t y and c o n t r o l can f u n c t i o n t o r e s t r i c t t h e v a r i a t i o n i n t h e b e h a v i o u r of s o c i e t y . I n l o n g - t e r m u n c e r t a i n t y , where i t cannot be managed and p e r s o n s must l i v e w i t h e n d u r i n g u n c e r t a i n t y , M i s h e l (1990) p r o p o s e d t h a t perhaps a new s t a t e can be a c h i e v e d t h a t e v o l v e s from what p r e v i o u s l y e x i s t e d . I t i s r e c o g n i z e d t h a t many i l l n e s s e s have l o n g - t e r m e f f e c t s on i n d i v i d u a l l i v e s . T h e r e f o r e , a t h e o r y t o e x p l a i n i l l n e s s - r e l a t e d e v e n t s needed t o i n c l u d e a p e r s p e c t i v e t h a t i l l u s t r a t e s how t h e e v e n t s e v o l v e o v e r t i m e . L i m i t i n g a p o s i t i v e a p p r a i s a l o f u n c e r t a i n t y t o a s i t u a t i o n i n 21 w h i c h t h e c e r t a i n outcome i n d i c a t e s p r o g r e s s i v e d e t e r i o r a t i o n o r d e a t h r e f l e c t s t h e c u l t u r a l v a l u e t h a t u n c e r t a i n t y i s an a v e r s i v e e x p e r i e n c e and, e x c e p t i n an extreme s i t u a t i o n , i s d e f i n i t e l y not p r e f e r a b l e t o c e r t a i n t y . M i s h e l (1990) contends t h a t o v e r t i m e , an a p p r a i s a l o f u n c e r t a i n t y as a danger may e v o l v e i n t o an a p p r a i s a l o f u n c e r t a i n t y as a p o s i t i v e e x p e r i e n c e . One has t o d e t e r m i n e t h e n e c e s s a r y t h r e s h o l d o f t h e u n c e r t a i n t y p l u s t h e e s s e n t i a l t i m e p e r i o d f o r t h e f l u x t o l e a d t o a new p e r s p e c t i v e on l i f e . The new v i e w of l i f e w i l l a l s o d e v e l o p from i n t e r a c t i o n w i t h and exchange between t h e p e r s o n and t h e e x t e r n a l e nvironment. F a c t o r s M i s h e l s u g g e s t e d t h a t i n f l u e n c e t h e f o r m a t i o n o f t h e new o r i e n t a t i o n toward l i f e i n t h e p e r s o n e x p e r i e n c i n g i l l n e s s a t t h e peak l e v e l of i n s t a b i l i t y a r e p r i o r l i f e e x p e r i e n c e , p h y s i o -l o g i c a l s t a t u s , s o c i a l r e s o u r c e s , and h e a l t h c a r e p r o v i d e r s . I n t h e grooming o f t h i s new p e r s p e c t i v e on l i f e , M i s h e l p r o p o s e d t h a t a dynamic p r o c e s s o c c u r s , w i t h i n p u t from s o c i a l r e s o u r c e s and h e a l t h c a r e p r o v i d e r s . The u n c e r t a i n t y t h a t , e a r l y i n t h e i l l n e s s was t h e s o u r c e of f l u c t u a t i o n and d i s r u p t i o n , l a t e r becomes t h e f o u n d a t i o n on w h i c h t h e new sense o f o r d e r i s c r e a t e d . Thus, p a t i e n t s attempt t o i n t e g r a t e t h e e x p e r i e n c e o f c h r o n i c u n c e r t a i n t y i n t o t h e i r s e l f - s t r u c t u r e . The new s t a t e of o r d e r has a new w o r l d v i e w i n v o l v i n g p r o b a b i l i s t i c and c o n d i t i o n a l t h i n k i n g and i n o r d e r t o d e v e l o p s u c h t h i n k i n g , M i s h e l (1990) contends t h a t t h e n a t u r e of u n c e r t a i n t y has t o be a c c e p t e d as t h e n a t u r a l rhythm o f l i f e . When p r o b a b i l i s t i c t h i n k i n g i s used, e v e n t s a r e seen as t h e r e s u l t of various contingencies and one's actions are appraised i n terms of varying p r o b a b i l i t i e s for success. The r e s u l t i s a person's new a b i l i t y to focus i n multiple a l t e r n a t i v e s , choices, and p o s s i b i l i t i e s ; to reevaluate what i s important i n l i f e ; to consider variations i n personal investment; to appreciate the f r a g i l i t y and impermanence of l i f e s i t u a t i o n s . The new view of l i f e i s f r a g i l e and i t i s maintained by continually expressing a negative appraisal of uncertainty into the environment i n exchange for the view that uncertainty allows for multiple choices. Thus, uncertainty i s an opportunity where the new view of l i f e allows for the evaluation of uncertainty to be changed from danger to opportunity. Early attempts to explore the importance of uncertainty i n chronic i l l n e s s situations focused primarily on s p e c i f i c patient populations. One such example i s the experience of p a r a l y t i c p o l i o m y e l i t i s i n children i n a longitudinal study by Davis (1960). Another example by Wiener (1975), analyzed fieldwork data c o l l e c t e d on hospital patients with rheumatoid a r t h r i t i s and found that uncertainty and severely limited options for solutions were among the central problems experienced by t h i s population. The s o c i o l o g i c a l aspects of pain management provides i n s i g h t into the demands placed upon l i v i n g when uncertainty i s exaggerated beyond the usual l e v e l of t o l e r a t i o n . Other c l i n i c a l and anecdotal descriptions of experiencing uncertainty i n chronic i l l n e s s include cancer (Hilton, 1988b; 1989), cardiovascular i l l n e s s (Christman et a l . , 1988; Webster & Christman, 1988; Ronayne, 1989; Ford, 1989), multiple s c l e r o s i s (Weeks, 1980), c y s t i c f i b r o s i s ( W a d d e l l , 1982), and A c q u i r e d Immune D e f i c i e n c y Syndrome (AIDS) ( W e i t z , 1989). U n c e r t a i n t y f o r a sample o f women w i t h b r e a s t c a n c e r was d e s c r i b e d as a s t a t e t h a t e x i s t s on a continuum and changes o v e r t i m e ( H i l t o n , 1988b). F o r women w i t h b r e a s t c a n c e r , u n c e r t a i n t y was c h a r a c t e r i z e d as a " p e r c e p t i o n t h a t ranges from a f e e l i n g j u s t l e s s t h a n s u r e t y ( c e r t a i n t y ) t o a f e e l i n g o f vagueness" (p. 220). U n c e r t a i n t y was accompanied by a v a r i e t y o f emo t i o n s . U n c e r t a i n t y and t h e s t r e s s i t caused was i n f l u e n c e d by p e r s o n a l s i t u a t i o n s , v a l u e s , b e l i e f s , g o a l s , and c h a r a c t e r i s t i c s o f i l l n e s s . A r eas o f u n c e r t a i n t y i n c l u d e d not f e e l i n g s a f e and s e c u r e w h i c h was r e l a t e d t o b e i n g u n a b l e t o f o r e t e l l t h e f u t u r e and not c l e a r l y knowing t h e p r e s e n t s i t u a t i o n ; e x p e r i e n c i n g doubt and a m b i v a l e n c e , and b e i n g u n d e c i d e d due t o t h i n g s b e i n g i n d e f i n i t e , u n c l e a r , o r undetermined. U n c e r t a i n t y was a l s o a p e r c e p t i o n o f vagueness when something i s not c l e a r , d e f i n i t e , o r d e t e r m i n e d ( H i l t o n , 1988b). I n a s t u d y by Dubyts (1988), u n c e r t a i n t y emerged as a c e n t r a l theme i n t h e e x p e r i e n t i a l a c c o u n t s o f p a t i e n t s who were a w a i t i n g c o r o n a r y a r t e r y bypass g r a f t (CABG) s u r g e r y . I n t h i s p h e n o m e n o l o g i c a l s t u d y , p a t i e n t s were u n c e r t a i n about t h e a c t u a l e x p e r i e n c e o f t h e s u r g e r y and h o s p i t a l i z a t i o n , t h e s h o r t and l o n g t e r m outcomes o f s u r g e r y , and about whether one would s u r v i v e t h e w a i t i n g p e r i o d w i t h o u t h a v i n g a m y o c a r d i a l i n f a r c t i o n o r d y i n g . F o r d (1989) measured u n c e r t a i n t y i n 121 p a t i e n t s who had b i o l o g i c a l c a r d i a c v a l v e i m p l a n t s u s i n g t h e USS ( 4 8 - i t e m v e r s i o n ) . O v e r a l l , s u b j e c t s p e r c e i v e d m o d e r a t e l y low l e v e l s o f u n c e r t a i n t y (M = 111.7, SD = 24.9); s c o r e s ranged from a low o f 61 t o h i g h o f 182. The n a t u r e o f u n c e r t a i n t y appeared t o be p r i m a r i l y g e n e r a t e d by t h e p a t i e n t s not b e i n g a b l e t o f o r e t e l l t h e f u t u r e and by t h e u n p r e d i c t a b i l i t y o f t h e i r s i t u a t i o n . Simurda (1988) d e s c r i b e d u n c e r t a i n t y i n p r i m a r y and r e o p e r a t i v e CABG s u r g e r y p a t i e n t s . As i n Ford's s t u d y , b o t h groups o f CABG s u r g e r y p a t i e n t s p e r c e i v e d m o d e r a t e l y low l e v e l s o f u n c e r t a i n t y o v e r a l l . I n a sample o f 94 k i d n e y p a t i e n t s , where 50 p a t i e n t s had r e c e i v e d a t l e a s t one t r a n s p l a n t , H i l t o n ( p e r s o n a l communication, March 20, 1989), used t h e USS 48-i t e m v e r s i o n and found t h a t o v e r a l l mean u n c e r t a i n t y s c o r e was 115.2 (SD = 19.6) w i t h t h e h i g h e s t u n c e r t a i n t y p o s s i b l e b e i n g 240. I n o t h e r c h r o n i c i l l n e s s g r o u p s , H i l t o n found t h e mean u n c e r t a i n t y s c o r e t o be 112.0 f o r c a n c e r p a t i e n t s (n = 200); 115.0 f o r h e a r t p a t i e n t s (n = 10); and 120.0 f o r v a s c u l a r p a t i e n t s (n = 150). No s i g n i f i c a n t d i f f e r e n c e i n u n c e r t a i n t y l e v e l was found between t h e s e f o u r p a t i e n t g roups. L i v i n g w i t h t h e p e r v a s i v e u n c e r t a i n t y was found t o be a major c h a l l e n g e f o r p a t i e n t s a w a i t i n g a c a d a v e r i c k i d n e y t r a n s p l a n t i n a s t u d y by Weems and P a t t e r s o n (1989). A r e a s o f u n c e r t a i n t y i n c l u d e d u n c e r t a i n t y r e g a r d i n g t h e a c t u a l e x p e r i e n c e o f t h e s u r g e r y and h o s p i t a l i z a t i o n , and t h e s h o r t and l o n g - t e r m outcomes o f t h e s u r g e r y . U n c e r t a i n t y was a l s o n o t e d t o be m a g n i f i e d and more d i s t r e s s f u l a t v a r i o u s t i m e s d u r i n g t h e w a i t f o r a t r a n s p l a n t . S u l s and M u l l e n (1981) proposed t h a t e v e n t s w i t h an u n c e r t a i n f u t u r e may be e x c e p t i o n a l l y s t r e s s f u l . U n c e r t a i n t y emerged i n f i v e s t u d i e s o f d i a l y s i s p a t i e n t s . B a l d r e e e t a l . (1982) measured t h e t y p e s and s e v e r i t y o f s t r e s s o r s o f h a e m o d i a l y s i s (HD) u s i n g t h e H a e m o d i a l y s i s S t r e s s o r S c a l e . They found t h a t l i m i t a t i o n o f f l u i d t o be t h e most t r o u b l e s o m e s t r e s s o r . O ther t o p ranked s t r e s s o r s were muscle cramps, f a t i g u e , u n c e r t a i n t y r e g a r d i n g t h e f u t u r e , and i n t e r f e r e n c e w i t h work. To e x p l a i n t h e r a n k i n g o f u n c e r t a i n t y , t h e s e r e s e a r c h e r s p r o p o s e d t h a t HD p a t i e n t s r e c o g n i z e d t h e i r i n a b i l i t y t o c o n t r o l t h e t r e a t m e n t o r outcome o f ESRD. G u r k l i s and Menke (1988) r e p l i c a t e d t h e B a l d r e e s t u d y w i t h a l a r g e r group o f HD p a t i e n t s . They found t h a t t h e t o p ranked s t r e s s o r s were f a t i g u e , l i m i t a t i o n o f f o o d , l i m i t a t i o n o f f l u i d , l i m i t a t i o n of p h y s i c a l a c t i v i t y , and f r e q u e n t h o s p i t a l a d m i s s i o n s . The HD s u b j e c t s i n t h e i r s t u d y p l a c e d a l o w e r r a n k i n g on t h e s t r e s s of an u n c e r t a i n f u t u r e . E i c h e l (1986) used B a l d r e e and c o l l e a g u e s ' t o o l t o s t u d y s t r e s s o r s a s s o c i a t e d w i t h c o n t i n u o u s a m b u l a t o r y p e r i t o n e a l d i a l y s i s (CAPD) and compared r e s u l t s w i t h t h e HD sample i n t h e B a l d r e e s t u d y . The f i n d i n g s o f t h i s s t u d y s u g g e s t e d t h a t CAPD s u b j e c t s r e p o r t e d l e s s s t r e s s t h a n HD p a t i e n t s . ;. The two g r o u p s , however, i d e n t i f i e d s i m i l a r s o u r c e s o f s t r e s s . F a t i g u e , l i m i t a t i o n o f p h y s i c a l a c t i v i t y , muscle cramps, changes i n body appearance, i t c h i n g , and i n t e r f e r e n c e w i t h t h e i r j o b were a l l r a n k e d among t h e t e n most s t r e s s f u l i tems f o r b o t h HD and CAPD p a t i e n t s . B i h l , F e r r a n s , and Powers (1988) a l s o used t h e B a l d r e e t o o l and compared s t r e s s o r s f o r CAPD and HD p a t i e n t s . The most t r o u b l e s o m e s t r e s s o r f o r t h e CAPD group was u n c e r t a i n t y about t h e f u t u r e , w h i l e t h e HD group r e p o r t e d f a t i g u e as t h e h i g h e s t r a n k e d s t r e s s o r . F i n a l l y , Fuchs and S c h r e i b e r (1988) examined s t r e s s o r s f o r CAPD and HD p a t i e n t s . They used t h e S t r e s s o r Assessment S c a l e , a m o d i f i e d v e r s i o n of t h e B a l d r e e t o o l . Of t h e p o s s i b l e 4 0 s t r e s s o r s , u n c e r t a i n t y r e g a r d i n g t h e f u t u r e was r a n k e d 11th by th e CAPD group and 12th by t h e HD group. F i n d i n g s i n d i c a t e d t h a t b o t h p a t i e n t groups r e p o r t e d s i m i l a r s t r e s s o r s t o t h e e a r l i e r s t u d i e s o f groups o f d i a l y s i s p a t i e n t s . I n a s t u d y o f p a t i e n t s t r a n s p l a n t e d l e s s t h a n s i x months, Hayward and c o l l e a g u e s (1989) found t h a t immediate h e a l t h c o n c e r n s i n c l u d e d t h e p o s s i b i l i t y o f r e j e c t i o n , p o s s i b i l i t y o f i n f e c t i o n , and u n c e r t a i n t y r e g a r d i n g t h e f u t u r e . F o r r e c e n t l y t r a n s p l a n t e d p a t i e n t s , t h e ev e n t s a s s o c i a t e d w i t h t h e i r new k i d n e y a r e n o v e l and u n f a m i l i a r , t h u s u n c e r t a i n t y can e x p e c t e d t o be h i g h e r . S u t t o n and Murphy (1989) s t u d i e d k i d n e y t r a n s p l a n t p a t i e n t s and found t h a t u n c e r t a i n t y c o n c e r n i n g t h e f u t u r e was a h i g h r a n k i n g s t r e s s o r b o t h f o r p a t i e n t s who had been t r a n s p l a n t e d l e s s t h a n two y e a r s and t h o s e t r a n s p l a n t e d up t o f o u r y e a r s . These r e s e a r c h e r s s u g g e s t e d t h e h i g h r a n k i n g o f u n c e r t a i n t y i n d i c a t e s t h a t , w h i l e g r a f t s u r v i v a l i s g r a d u a l l y i m p r o v i n g , t h e p o t e n t i a l f o r k i d n e y r e j e c t i o n i s s t i l l an e v e r p r e s e n t t h r e a t . I n a d d i t i o n , s i n c e g r a f t s u r v i v a l r a t e s d e c l i n e as t i m e goes on, i t i s r e a s o n a b l e t o e x p e c t t h a t a c e r t a i n degree o f u n c e r t a i n t y may be l i k e l y f o r p a t i e n t s who have been t r a n s p l a n t e d l o n g e r . However, t h e r e were no s t u d i e s t h a t e v a l u a t e d p a t i e n t s who had been t r a n s p l a n t e d on a l o n g - t e r m b a s i s , t h a t i s g r e a t e r t h a n f o u r y e a r s , where t h e r e i s no i n f o r m a t i o n t h a t d e s c r i b e s o r q u a n t i f i e s 27 t h e i r p e r c e p t i o n s o f u n c e r t a i n t y . Four s t u d i e s were found i n t h e l i t e r a t u r e t h a t q u a n t i f i e d and i d e n t i f i e d s t r e s s o r s s p e c i f i c t o k i d n e y t r a n s p l a n t a t i o n and h i g h l i g h t t h e s i g n i f i c a n c e o f t h e s t r e s s g e n e r a t e d by u n c e r t a i n t y f o r k i d n e y t r a n s p l a n t p a t i e n t s . O v e r a l l , t h e f i n d i n g s o f t h e s e s t u d i e s i n d i c a t e d t h a t k i d n e y t r a n s p l a n t p a t i e n t s e x p e r i e n c e d m o d e r a t e l y low l e v e l s of s t r e s s d u r i n g v a r i o u s s t a g e s i n t h e p o s t - t r a n s p l a n t p e r i o d . Hayward e t . a l . (1989) i d e n t i f i e d t h a t t h e p o s s i b i l i t y o f r e j e c t i o n and u n c e r t a i n t y c o n c e r n i n g t h e f u t u r e as major s t r e s s o r s f o r p a t i e n t s s i x weeks a f t e r t h e i r k i d n e y was t r a n s p l a n t e d . White and c o l l e a g u e s (1990) i d e n t i f i e d t h a t b e i n g u n c e r t a i n about whether the t r a n s p l a n t e d k i d n e y w i l l be a s u c c e s s was a c o n c e r n g e n e r a t i n g a g r e a t d e a l o f s t r e s s f o r a d u l t k i d n e y p a t i e n t s i n t h e f i r s t s i x months f o l l o w i n g t r a n s p l a n t a t i o n . F i n d i n g s from a n o t h e r s t u d y ( F r e y , 1990) i n d i c a t e d t h a t r e j e c t i o n and u n c e r t a i n t y r e g a r d i n g t h e f u t u r e were a l s o s i g n i f i c a n t s t r e s s o r s f o r p a t i e n t s who had l i v e d w i t h t h e i r c u r r e n t k i d n e y t r a n s p l a n t f o r two y e a r s . F i n a l l y , S u t t o n and Murphy (1989) found t h a t f e a r o f k i d n e y r e j e c t i o n and u n c e r t a i n t y c o n c e r n i n g t h e f u t u r e were a l s o c o n s i d e r e d most s t r e s s f u l , even f o r p a t i e n t s who were t r a n s p l a n t e d l e s s t h a n f o u r y e a r s . A d d i t i o n a l s t r e s s o r s s p e c i f i c t o t r a n s p l a n t a t i o n i n c l u d e d t h e number of m e d i c a t i o n s , l a c k o f i n f o r m a t i o n and u n d e r s t a n d i n g , t h e need f o r more organ d o n o r s , and g e n e r a l e d u c a t i o n o f t h e p u b l i c about r e n a l t r a n s p l a n t a t i o n . W h i l e t h e s e s t u d i e s i n d i c a t e t h a t u n c e r t a i n t y i s a p e r v a s i v e theme and i s a s s o c i a t e d w i t h s t r e s s f o r p a t i e n t s 28 t r a n s p l a n t e d f o r a p e r i o d o f t i m e up t o f o u r y e a r s , no s t u d i e s were found t h a t e x p l o r e d l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s 1 p e r c e p t i o n s o f s t r e s s i n r e l a t i o n t o u n c e r t a i n t y . A l t h o u g h few s t u d i e s have e x p l o r e d t h e p o s s i b i l i t y t h a t u n c e r t a i n t y may be viewed as a p o s i t i v e s t a t e , some s u p p o r t e x i s t s i n t h e l i t e r a t u r e f o r an o p p o r t u n i t y e v a l u a t i o n . I n i l l n e s s e s such as c y s t i c f i b r o s i s , Y a r c h e s k i (1988) n o t e d t h a t t h o s e a d o l e s c e n t s w i t h h i g h e r l e v e l s of u n c e r t a i n t y had a l o n g e r f u t u r e t i m e p e r s p e c t i v e . Among p a r e n t s o f h o s p i t a l i z e d c h i l d r e n , M i s h e l (1983) found t h a t l a c k o f i n f o r m a t i o n (a t y p e o f u n c e r t a i n t y ) was a s s o c i a t e d w i t h a more p o s i t i v e i n t e r p r e t a t i o n o f t h e s e r i o u s n e s s o f t h e i r c h i l d ' s i l l n e s s . M i s h e l (1990) s u g g e s t s t h a t u n c e r t a i n t y may have a p o s i t i v e i n f l u e n c e on p a t i e n t s and may f a c i l i t a t e hope t h a t t h e i r i l l n e s s i s not as s e v e r e as f e a r e d . F o r p e r s o n s w i t h i l l n e s s e s w i t h a downward t r a j e c t o r y , u n c e r t a i n t y can be a p p r a i s e d as an o p p o r t u n i t y . The e x p l a n a t i o n f o r u n c e r t a i n t y b e i n g a p p r a i s e d as an o p p o r t u n i t y i s l o g i c a l s i n c e , when t h e a l t e r n a t i v e i s n e g a t i v e c e r t a i n t y , u n c e r t a i n t y becomes a p r e f e r a b l e s t a t e . F i n d i n g s from r e s e a r c h based on p e r s o n s w i t h l o n g - t e r m c h r o n i c i l l n e s s e s w i t h o u t a downward t r a j e c t o r y , such as f a m i l y members of h e a r t t r a n s p l a n t r e c i p i e n t s showed t h a t u n c e r t a i n t y was a p p r a i s e d as a d e s i r e d s t a t e ( M i s h e l & Murdaugh, 1987). The p o t e n t i a l p o s i t i v e e f f e c t s a s s o c i a t e d w i t h u n c e r t a i n t y have been examined i n s t u d i e s o f c a n c e r p a t i e n t s . F i n d i n g s from t h e s e s t u d i e s i n d i c a t e t h a t p o s i t i v e e f f e c t s , such as hope, were 29 r e l a t e d t o p a t i e n t s p e r c e p t i o n s o f u n c e r t a i n t y . C a s s i l e t h , Z u p k i s , S u t t o n - S m i t h , and March (1980) found t h a t hope was p o s i t i v e l y r e l a t e d t o m e d i c a l s t a t u s and p r e f e r e n c e s f o r a c t i v e i n v o l v e m e n t i n t r e a t m e n t o f c a n c e r . I n a n o t h e r s t u d y o f women newly d i a g n o s e d w i t h g y n a e c o l o g i c a l c a n c e r , M i s h e l e t a l . (1984) found t h a t w h i l e hope was u n r e l a t e d t o s e r i o u s n e s s o f i l l n e s s , i t was i n v e r s e l y a s s o c i a t e d w i t h u n c e r t a i n t y . I n t h e t h i r d s t u d y , H i l t o n (1988a) found t h a t women d i a g n o s e d w i t h b r e a s t c a n c e r a s s o c i a t e d p o s i t i v e f e e l i n g s w i t h s u r e t y ( c e r t a i n t y ) . No l i t e r a t u r e was found t o suggest whether l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s a p p r a i s e u n c e r t a i n t y as a t h r e a t o r as an o p p o r t u n i t y . C o ping S t r a t e g i e s The l i t e r a t u r e a d d r e s s i n g c o p i n g s t r a t e g i e s i s o r g a n i z e d under t h r e e s e c t i o n s . I n t h e f i r s t s e c t i o n , t h e f o c u s w i l l be on l i t e r a t u r e w h i c h d e s c r i b e s t h e concept o f c o p i n g s t r a t e g i e s . F o l l o w i n g t h i s , s e l e c t e d l i t e r a t u r e w h i c h f o c u s e s on t h e c o p i n g s t r a t e g i e s used by p a t i e n t s i n ESRD and o t h e r c h r o n i c i l l n e s s s i t u a t i o n s w i l l be p r e s e n t e d . F i n a l l y , c u r r e n t e v i d e n c e w h i c h s u g g e s t s t h a t u n c e r t a i n t y may be s t r e s s f u l and i n f l u e n c e s t h e c o p i n g s t r a t e g i e s used by p a t i e n t s i n c h r o n i c i l l n e s s and i t s t r e a t m e n t w i l l be p r e s e n t e d . The Concept o f Coping S t r a t e g i e s L a z a r u s and Folkman (1984) d e f i n e c o p i n g as t h e " c o n s t a n t l y c h a n g i n g c o g n i t i v e and b e h a v i o u r a l e f f o r t s t o manage s p e c i f i c e x t e r n a l and/or i n t e r n a l demands t h a t a r e a p p r a i s e d as t a x i n g o r e x c e e d i n g t h e r e s o u r c e s of t h e p e r s o n " (p. 141). L a z a r u s (1966) 30 d e s c r i b e d f o u r major t a s k s t h a t a r e i n v o l v e d when c o p i n g w i t h s t r e s s f u l c o n d i t i o n s : t o l e r a t i n g o r r e l i e v i n g some o r a l l o f t h e accompanying d i s t r e s s , m a i n t a i n i n g a sense o f p e r s o n a l w o r t h d e s p i t e d e f e a t s , m a i n t a i n i n g r e w a r d i n g p e r s o n a l r e l a t i o n s h i p s , and m e e t i n g t h e s p e c i f i c r e q u i r e m e n t s o f t h e s t r e s s f u l t a s k s . A c c o r d i n g t o t h i s t h e o r y , t h e way a p e r s o n c o n s t r u e s an e n c o u n t e r s t r o n g l y i n f l u e n c e s t h e k i n d o f c o p i n g s t r a t e g i e s t h a t w i l l be used t o manage t h e demands o f t h e e n c o u n t e r . C o p i n g s t r a t e g i e s a r e e f f o r t s t h a t an i n d i v i d u a l g e n e r a t e s as a r e s u l t o f c o g n i t i v e a p p r a i s a l s i n o r d e r t o change t h e meaning o f t h e s i t u a t i o n o r t o m o d i f y t h e environment. Folkman and L a z a r u s (1988) note t h a t t h i s d e f i n i t i o n r e f e r s t o t h e two f u n c t i o n s o f c o p i n g : p r o b l e m - f o c u s e d forms of c o p i n g a r e d i r e c t e d a t managing o r a l t e r i n g t h e problem c a u s i n g d i s t r e s s , whereas e m o t i o n - f o c u s e d forms o f c o p i n g a r e d i r e c t e d a t r e g u l a t i n g e m o t i o n a l r e s p o n s e s t o t h e problem. These two d i s t i n c t forms of c o p i n g e f f o r t s i n f l u e n c e each o t h e r by impeding o r f a c i l i t a t i n g each o t h e r . Both forms can be s i m u l t a n e o u s l y used i n t h e same e n c o u n t e r (Folkman & L a z a r u s , 1980). Cohen and L a z a r u s (1979) i d e n t i f i e d f i v e modes o r forms o f c o p i n g : i n f o r m a t i o n s e e k i n g , d i r e c t a c t i o n , i n h i b i t i o n o f a c t i o n , i n t r a p s y c h i c , and t u r n i n g t o o t h e r s . Each mode o f c o p i n g s e r v e s b o t h p r o b l e m - s o l v i n g and e m o t i o n - r e g u l a t i n g f u n c t i o n s . I n f o r m a t i o n s e e k i n g i s one o f t h e most b a s i c forms o f c o p i n g i n s i t u a t i o n s t h a t a r e n o v e l and of wh i c h knowledge i s l i m i t e d , o r under c o n d i t i o n s o f a m b i g u i t y . U s i n g t h i s form o f c o p i n g , t h e p e r s o n a t t e m p t s t o f i n d out whether problems e x i s t and what, i f 31 a n y t h i n g , must be done. V i g i l a n t s t r a t e g i e s d e s c r i b e t h e p e r s o n ' s attempt t o g a i n c o n t r o l o v e r one's l i f e by s e e k i n g knowledge. When u s i n g t h e s e s t r a t e g i e s , t h e p e r s o n d i r e c t s a t t e n t i o n toward t h e problem i n an attempt t o p r e v e n t o r c o n t r o l i t . F o r example, i n an i l l n e s s s i t u a t i o n , some p a t i e n t s a r e i n s a t i a b l e i n t h e i r s e a r c h f o r i n f o r m a t i o n about t h e i r d i a g n o s i s , whereas o t h e r s a v o i d i t and p r e f e r t o p l a c e t h e m s e l v e s i n t h e hands of someone t h e y can t r u s t . I n a second form o f c o p i n g , d i r e c t a c t i o n r e f e r s t o a n y t h i n g an i n d i v i d u a l does about t h e problem, such as a r g u i n g , r u n n i n g away, o r c o m p l y i n g w i t h t r e a t m e n t o r t h e r a p y . On t h e o t h e r hand, r e f r a i n i n g from a c t i o n s t h a t a r e i m p u l s i v e , p o o r l y grounded i n i n f o r m a t i o n , o r p o t e n t i a l l y dangerous o r e m b a r r a s s i n g may be viewed as i n h i b i t i o n of a c t i o n , and can be c o n s i d e r e d a t h i r d l e g i t i m a t e mode of c o p i n g . A f o u r t h mode of c o p i n g i n c l u d e s i n t r a p s y c h i c o r c o g n i t i v e p r o c e s s e s such as d e n i a l , a v o i d a n c e , i n t e l l e c t u a l i z e d detachment, p u t t i n g on a good f a c e i n a bad s i t u a t i o n , and s t r a t e g i e s w h i c h a r e t r a d i t i o n a l l y t hought o f as d e f e n s e mechanisms. Cohen and L a z a r u s (1979) s t a t e t h a t t h e s e modes a r e p a r t i c u l a r l y i m p o r t a n t i n t h e o v e r a l l c o n t e x t o f i l l n e s s because, so o f t e n , l i t t l e can be done d i r e c t l y by t h e p a t i e n t e x c e p t t o a l l o w t h e r a p e u t i c p r o c e d u r e s o r s u r g e r y t o be done and t o f i n d some s e r v i c e a b l e way t o t h i n k about what i s g o i n g on. The more h e l p l e s s t h e p e r s o n f e e l s , t h e more he o r she must depend on c o g n i t i v e o r i n t r a p s y c h i c modes of c o p i n g . T u r n i n g t o o t h e r s f o r h e l p i s t h e f i f t h mode o f c o p i n g d e s c r i b e d by Cohen and L a z a r u s (1979). There i s e v i d e n c e t o s u g g e s t t h a t p e o p l e who can use and m a i n t a i n s o c i a l r e l a t i o n s h i p s and s o c i a l s u p p o r t s enhance t h e i r p o s s i b i l i t i e s f o r e f f e c t i v e c o p i n g . S t r e s s a p p r a i s a l s r e q u i r e t h e m o b i l i z a t i o n o f c o p i n g e f f o r t s . Depending on t h e s i t u a t i o n , f a c t o r s such as demands, c o p i n g o p t i o n s a v a i l a b l e , and s o c i a l s u p p o r t s a r e examples Cohen & L a z a r u s (1979) c i t e t h a t have an i m p o r t a n t e f f e c t on t h e c o p i n g s t r a t e g i e s a p e r s o n u s e s . L a z a r u s and Folkman (1984) n o t e t h a t a f u l l u n d e r s t a n d i n g o f c o p i n g r e q u i r e s t h a t b o t h f u n c t i o n s be c o n s i d e r e d . A c c o r d i n g t o t h e s t r e s s and c o p i n g t h e o r y , c o p i n g s t r a t e g i e s s e r v e two major f u n c t i o n s . P r o b l e m - o r i e n t e d c o p i n g i s d i r e c t e d a t managing o r a l t e r i n g t h e problem c a u s i n g d i s t r e s s and s e r v e a p r o b l e m - s o l v i n g f u n c t i o n . E m o t i o n - f o c u s e d c o p i n g s t r a t e g i e s a t t e m p t t o d e a l w i t h s t r e s s f u l emotions caused by t h e s i t u a t i o n and t o r e g u l a t e t h e e m o t i o n a l d i s t r e s s t h e r e b y s e r v i n g a p a l l i a t i v e f u n c t i o n . I n t h i s t h e o r y , s i t u a t i o n s where something c o n s t r u c t i v e c o u l d be done o r a r e a p p r a i s e d as r e q u i r i n g more i n f o r m a t i o n f a v o u r p r o b l e m - f o c u s e d c o p i n g , whereas t h o s e h a v i n g t o be a c c e p t e d f a v o u r e m o t i o n - f o c u s e d c o p i n g . C o p i n g S t r a t e g i e s Used by P a t i e n t s i n ESRD B a l d r e e and c o l l e a g u e s (1982) i d e n t i f i e d c o p i n g s t y l e s used by HD p a t i e n t s i n terms of problem- and e m o t i o n - f o c u s e d c o p i n g . They used t h e 4 0 - i t e m o r i g i n a l v e r s i o n of t h e JCS and found t h a t p a t i e n t s used p r o b l e m - f o c u s e d e f f o r t s more o f t e n t h a n t h e y used e m o t i o n - f o c u s e d c o p i n g . The most f r e q u e n t l y used c o p i n g s t r a t e g i e s were m a i n t a i n c o n t r o l , p r a y i n g , l o o k a t t h e problem o b j e c t i v e l y , and hope. G u r k l i s and Menke (1988) r e p l i c a t e d t h e B a l d r e e s t u d y and r e p o r t e d s i m i l a r f i n d i n g s . They found t h a t HD p a t i e n t s used p r o b l e m - f o c u s e d forms o f c o p i n g t o manage t h e s t r e s s a s s o c i a t e d w i t h t r e a t m e n t . Coping s t r a t e g i e s used were a l s o s i m i l a r t o t h e r e p l i c a t i o n s t u d y . I n a d d i t i o n t o t h e s e s t r a t e g i e s , a t o p r a n k i n g s t r a t e g y was t o a c c e p t t h e s i t u a t i o n . E i c h e l (1986) compared c o p i n g s t r a t e g i e s used by CAPD p a t i e n t s w i t h t h e s t u d y f i n d i n g s of B a l d r e e ' s sample o f HD p a t i e n t s . C o p i n g s t r a t e g i e s used by b o t h p a t i e n t groups were s i m i l a r . I n a d d i t i o n , a c c e p t a n c e and t h i n k and t r y d i f f e r e n t s o l u t i o n s were common t o t h e t o p t e n s t r a t e g i e s f o r b o t h groups. F i n d i n g s i n d i c a t e d t h a t CAPD p a t i e n t s used e m o t i o n - f o c u s e d ( a f f e c t i v e ) c o p i n g l e s s t h a n t h e HD sample. E i c h e l o f f e r e d two e x p l a n a t i o n s f o r t h e lo w e r s c o r e on t h e e m o t i o n - f o c u s e d s u b s c a l e (1) i t may have been t h a t t h e CAPD p a t i e n t s were t r a i n e d t o be r e s p o n s i b l e f o r p r o b l e m - s o l v i n g and p o s s i b l y emphasized problem o r i e n t e d s t r a t e g i e s i n response t o p e r c e i v e d e x p e c t a t i o n s by t h e i r h e a l t h c a r e p e r s o n n e l ; and, (2) as s t r e s s i n c r e a s e d , p r o b l e m - o r i e n t e d s t r a t e g i e s may not be s u f f i c i e n t and p a t i e n t s needed t o use e m o t i o n - f o c u s e d s t r a t e g i e s as w e l l . S r i v a s t a v a (1988) examined c o p i n g i n spouses o f CAPD p a t i e n t s and a l s o found t h a t p r o b l e m - o r i e n t e d forms o f c o p i n g were f r e q u e n t l y used. The f i n d i n g s g e n e r a l l y s u p p o r t t h e p r e v i o u s s t u d i e s and c o n t r i b u t e a d d i t i o n a l i n f o r m a t i o n about c o p i n g e f f e c t i v e n e s s . F i n d i n g s i n d i c a t e d t h a t t h e s t r a t e g i e s 34 most f r e q u e n t l y used were not n e c e s s a r i l y t h e most e f f e c t i v e . As i n t h e s t u d i e s t h a t examined c o p i n g s t r a t e g i e s used by d i a l y s i s p a t i e n t s , S u t t o n and Murphy (1989) a l s o used t h e JCS w i t h a sample o f p a t i e n t s l e s s t h a n f o u r y e a r s p o s t k i d n e y t r a n s p l a n t . C o p i n g s t r a t e g i e s t h a t r a nked h i g h e s t were problem-o r i e n t e d . As i n s t u d i e s t h a t f o c u s e d on d i a l y s i s p o p u l a t i o n s , t h i s group o f t r a n s p l a n t p a t i e n t s a l s o p l a c e d a h i g h r a n k i n g on p r a y e r w h i c h f a l l s under t h e g e n e r a l r u b r i c o f e m o t i o n - f o c u s e d c o p i n g . F o r a d u l t p a t i e n t s w i t h i n t h e f i r s t s i x months o f t r a n s p l a n t a t i o n , White and c o l l e a g u e s (1990) measured c o p i n g u s i n g The K i d n e y T r a n s p l a n t Q u e s t i o n n a i r e w h i c h c o n s i s t e d o f 10 r a t i o n a l l y c o n s t r u c t e d s c a l e s . The h i g h e s t s c o r i n g s t r a t e g i e s were on t h e d i s t a n c i n g / d e t a c h m e n t and s e l f - c o n t r o l l i n g s u b s c a l e s . F i n d i n g s i n d i c a t e d t h a t w h i l e t h e sample used a p o s i t i v e a t t i t u d e and l o o k i n g on t h e b r i g h t s i d e o f t h i n g s as c o p i n g s t r a t e g i e s , t h e y a t t e m p t e d t o do so i n a r e a l i s t i c manner. The esca p e -w i s h f u l t h i n k i n g s u b s c a l e had t h r e e items (smoking, t a k i n g d r u g s , and d r i n k i n g ) t h a t were among t h e l o w e s t s c o r i n g methods o f c o p i n g w i t h s t r e s s . T h i s f i n d i n g was s i m i l a r t o s t u d i e s t h a t examined c o p i n g s t r a t e g i e s used by d i a l y s i s p a t i e n t s . O v e r a l l , t h e s e s t u d i e s r e v e a l e d t h a t most i n d i v i d u a l s do not cope by any one b e h a v i o u r , r a t h e r , a v a r i e t y o f s t r a t e g i e s a r e g e n e r a l l y e v i d e n t . These s t u d i e s a l s o i n d i c a t e d t h a t w h i l e p r o b l e m - o r i e n t e d c o p i n g methods were p r e d o m i n a n t l y u s e d , some e m o t i o n - f o c u s e d forms of c o p i n g were a l s o used by d i a l y s i s and t r a n s p l a n t p a t i e n t s . 35 U n c e r t a i n t y and I n f l u e n c e s on C oping S t r a t e g i e s There has been a r e c e n t f o c u s on t h e c o g n i t i v e a p p r a i s a l o f s t r e s s f u l e v e n t s (Cohen & L a z a r u s , 1979; L a z a r u s & Folkman, 1984; McCrae, 1984; V i n e y & Westbrook, 1984). The way a p e r s o n a p p r a i s e s an e n c o u n t e r s t r o n g l y i n f l u e n c e s c o p i n g e f f o r t s and how t h e p e r s o n r e a c t s e m o t i o n a l l y . S i t u a t i o n f a c t o r s s uch as t h e demands of t h e s i t u a t i o n ( u n c e r t a i n t y ) , c o p i n g o p t i o n s a v a i l a b l e w i t h i n t h e s i t u a t i o n , and s o c i a l s u p p o r t s have an i m p o r t a n t e f f e c t on t h e c o p i n g s t r a t e g i e s t h e p e r s o n uses (Cohen & L a z a r u s , 1979) . R e s e a r c h f i n d i n g s demonstrated t h a t p a t i e n t s use a v a r i e t y o f c o p i n g s t r a t e g i e s t o manage u n c e r t a i n t y . The s t u d i e s t h a t f o l l o w s u g g e s t t h a t u n c e r t a i n t y may i n f l u e n c e t h e c o p i n g s t r a t e g i e s an i n d i v i d u a l uses t o manage c h r o n i c i l l n e s s and i t s t r e a t m e n t . Most of t h e c o p i n g s t r a t e g i e s c h r o n i c a l l y i l l p a t i e n t s used seem t o be r e l a t e d t o t h e f i v e main forms of c o p i n g s u g g e s t e d by Cohen and L a z a r u s (1979). I n i t i a l a t t e m p t s t h a t e x p l o r e d c o p i n g w i t h u n c e r t a i n t y were c o n d u c t e d i n t h e l a b o r a t o r y and d i d not t a k e a p a t i e n t f o c u s . Monat (1976) i n v e s t i g a t e d t h e e f f e c t s of t e m p o r a l u n c e r t a i n t y , a n t i c i p a t o r y t i m e , and c o p i n g r e a c t i o n s t o an i n e v i t a b l e e l e c t r i c shock i n male c o l l e g e s t u d e n t s . Temporal u n c e r t a i n t y and a n t i c i p a t o r y t i m e were found t o i n t e r a c t t h e r e b y a f f e c t i n g s t r e s s r e a c t i v i t y . As t h e shock became imminent, t e m p o r a l u n c e r t a i n t y l e a d t o t h e i n c r e a s e d use o f a v o i d a n t , r a t h e r t h a n v i g i l a n t modes of c o p i n g and was a s s o c i a t e d w i t h a p r o g r e s s i v e l o w e r i n g o f r e a c t i v i t y , e s p e c i a l l y under t h e l o n g e r a n t i c i p a t o r y t i m e s . 36 I n c h r o n i c i l l n e s s s i t u a t i o n s , i n f o r m a t i o n s e e k i n g has been proposed by some r e s e a r c h e r s as t h e p r i m a r y means f o r r e d u c i n g u n c e r t a i n t y . I n a s t u d y o f c h i l d h o o d l e u k a e m i a , Comaroff and Maquire (1981) noted t h e e f f e c t i v e n e s s o f t h i s form o f c o p i n g t o reduce u n c e r t a i n t y i n i l l n e s s - r e l a t e d e x p e r i e n c e s . However, C h r i s t m a n and c o l l e a g u e s (1988) found t h a t d i r e c t a c t i o n was t h e l e a s t used method f o r t h e r e d u c t i o n o f u n c e r t a i n t y i n t h e i r s t u d y o f m y o c a r d i a l i n f a r c t i o n p a t i e n t s . I n a s t u d y e x a m i n i n g t h e e x p e r i e n c e o f u n c e r t a i n t y and t h e s t r e s s t h i s caused f o r women w i t h b r e a s t c a n c e r , H i l t o n (1988b) found o v e r a l l t h a t n e g a t i v e emotions were a s s o c i a t e d w i t h u n c e r t a i n t y and p o s i t i v e emotions w i t h s u r e t y . I n o r d e r t o manage t h e u n c e r t a i n t y and/or s t r e s s of t h e u n c e r t a i n t y , t h e s e women used a v a r i e t y o f c o p i n g s t r a t e g i e s such as f o c u s i n g on t h e p o s i t i v e , m o d i f y i n g o r b u f f e r i n g t h e s i t u a t i o n , m o b i l i z i n g r e s o u r c e s , and m i n i m i z i n g s t r e s s e f f e c t s . H i l t o n (1989) used a c a n o n i c a l c o r r e l a t i o n a l a n a l y s i s t o measure t h e r e l a t i o n s h i p among a s e t o f independent v a r i a b l e s ( u n c e r t a i n t y , commitment, t h r e a t o f r e c u r r e n c e , c o n t r o l o f t h e c o u r s e o f c a n c e r ) and a s e t of dependent v a r i a b l e s ( e i g h t c o p i n g s t r a t e g i e s ) . The f i r s t c a n o n i c a l s e t i n d i c a t e d a p o s i t i v e r e l a t i o n s h i p between use o f es c a p e - a v o i d a n c e and a c c e p t i n g r e s p o n s i b i l i t y b u t not p o s i t i v e r e a p p r a i s a l s t r a t e g i e s were found t o be c h a r a c t e r i s t i c o f women who had low commitment and low c o n t r o l t o g e t h e r w i t h h i g h u n c e r t a i n t y and h i g h t h r e a t of r e c u r r e n c e . The second s e t i n d i c a t e d t h a t s e e k i n g s o c i a l s u p p o r t , as w e l l as t h e use o f p l a n f u l problem s o l v i n g , e s c a p e - a v o i d a n c e , p o s i t i v e r e a p p r a i s a l , and s e l f - c o n t r o l l i n g s t r a t e g i e s were adopted by women who had h i g h t h r e a t o f r e c u r r e n c e and h i g h c o n t r o l . These b a s i c c o p i n g s t r a t e g i e s a r e a l s o d e s c r i b e d by W e i t z (1989) i n , a s t u d y w i t h gay and b i s e x u a l men who had AIDS. F i n d i n g s s u g g e s t e d t h a t p ersons w i t h AIDS responded t o t h e u n c e r t a i n t i e s o f t h e i r i l l n e s s by a t t e m p t i n g t o g a i n as much c o n t r o l o v e r t h e i r l i v e s t h r o u g h s e e k i n g knowledge ( v i g i l a n c e ) and a v o i d i n g knowledge about t h e d i s e a s e . A l s o , t h e p a r t n e r s o f h e a r t t r a n s p l a n t p a t i e n t s managed t h e i r v u l n e r a b i l i t y by immersing t h e m s e l v e s i n t h e i r s i t u a t i o n t o enhance p r e d i c t a b i l i t y and d e c r e a s e u n c e r t a i n t y o f e v e n t s ( M i s h e l & Murdaugh, 1987). As i n p a t i e n t s w i t h AIDS, t h e s u b j e c t s i n t h i s s t u d y were found t o e x h i b i t a h e i g h t e n e d s t a t e o f v i g i l a n c e i n o r d e r t o a n t i c i p a t e any s i g n s o f danger t h a t c o u l d d e s t r o y t h e i r p r e c a r i o u s s t a b i l i t y . I f p r o b l e m - f o c u s e d s t r a t e g i e s a r e not e f f e c t i v e , t h e n e m o t i o n - f o c u s e d o r a f f e c t - c o n t r o l s t r a t e g i e s can a l s o be used by a p e r s o n t o manage t h e e m o t i o n a l r e s p o n s e s , p a r t i c u l a r l y f o r t h e a n x i e t y t h a t o c c u r s when t h e p e r s o n b e l i e v e s t h a t n o t h i n g can be done t o m o d i f y t h e u n c e r t a i n t y . Support f o r t h e use o f a f f e c t i v e c o p i n g was r e p o r t e d by V i n e y and Westbrook (1984). F o r p e r s o n s w i t h c h r o n i c i l l n e s s and h i g h l e v e l s of u n c e r t a i n t y , t h e r e was a p r e f e r e n c e f o r s t r a t e g i e s t o c o n t r o l n e g a t i v e e motions. Those w i t h l i t t l e u n c e r t a i n t y p r e f e r r e d t o use a c t i o n s t r a t e g i e s ( e . g . i n f o r m a t i o n s e e k i n g ) . Webster and C h r i s t m a n (1988) r e p o r t e d t h a t a f f e c t i v e c o p i n g was used t o manage u n c e r t a i n t y i n p o s t m y o c a r d i a l i n f a r c t i o n p a t i e n t s . They a l s o s t u d i e d p a t i e n t s ' 38 e m o t i o n a l r e s p o n s e s f o l l o w i n g h o s p i t a l i z a t i o n f o r m y o c a r d i a l i n f a r c t i o n . H i g h l e v e l s o f a m b i g u i t y were a s s o c i a t e d w i t h g r e a t e r use o f a f f e c t i v e c o p i n g s t r a t e g i e s even though p a t i e n t s r e p o r t e d u s i n g more p r o b l e m - s o l v i n g t h a n a f f e c t i v e c o p i n g s t r a t e g i e s . A l l p a t i e n t s , t h o s e w i t h h i g h and low l e v e l s o f u n c e r t a i n t y used more p r o b l e m - o r i e n t e d forms o f c o p i n g . T h i s r e s e a r c h e r s u g g e s t e d t h a t p a t i e n t s were s t r i v i n g t o s o l v e t h e problem c r e a t e d by t h e i r i l l n e s s r e g a r d l e s s o f l e v e l o f u n c e r t a i n t y . The sense o f d i s o r g a n i z a t i o n r e s u l t i n g from u n c e r t a i n t y can be r e d u c e d by c o n t a c t w i t h o t h e r s who have f a c e d t h e same e x p e r i e n c e . Molleman and c o l l e a g u e s (1984) found t h a t p a t i e n t s c o p i n g w i t h c a n c e r used f e l l o w p a t i e n t s as s o c i a l c omparisons t o re d u c e u n c e r t a i n t y . These p a t i e n t s p r e f e r r e d t o c o n s u l t f e l l o w p a t i e n t s who were e x p e r i e n c i n g s i m i l a r problems because t h e y were viewed t o be more i n f o r m a t i v e . To manage t h e u n c e r t a i n c o u r s e o f t h e i r i l l n e s s , p a t i e n t s sought t o s y s t e m a t i z e i n f o r m a t i o n and c o n s t r u c t norms a g a i n s t w h i c h t o gauge t h e i r p r e s e n t and f u t u r e p r o s p e c t s . These " e x p e r t s " p r o v e d t o be t h e most e f f e c t i v e means by w h i c h a p a t i e n t c o u l d reduce one's u n c e r t a i n t y . I n ESRD, G u r k l i s and Menke (1988) noted t h a t s e v e r a l c h r o n i c HD s u b j e c t s h a n d l e d t h e u n c e r t a i n t y o f t h e f u t u r e by c o p i n g one day a t a t i m e . The m a j o r i t y o f s u b j e c t s i n t h i s s t u d y were on d i a l y s i s f o r a l o n g e r p e r i o d o f t i m e . They proposed t h a t t h i s f i n d i n g i n t r o d u c e d t h e i n f l u e n c e of t h e l e n g t h o f t i m e o f t r e a t m e n t on t h e s t r a t e g i e s i n d i v i d u a l s use t o cope w i t h u n c e r t a i n t y o f t h e f u t u r e . I n o r d e r t o manage t h e u n c e r t a i n t y a s s o c i a t e d w i t h w a i t i n g f o r a c a d a v e r i c k i d n e y t r a n s p l a n t , Weems and P a t t e r s o n (1989) r e p o r t e d t h a t p a t i e n t s used c o g n i t i v e s t r a t e g i e s such as "when t h e t i m e comes, t h e k i d n e y w i l l come", o r r e m i n d i n g t h e m s e l v e s t h a t d i a l y s i s was s t i l l an o p t i o n . Some p a t i e n t s assumed t h a t t h e i r n e p h r o l o g i s t s e r v e d as t h e i r a d v o c a t e , and when a k i d n e y was not f o r t h c o m i n g , t h e y blamed t h e i r n e p h r o l o g i s t w h i c h was found t o be a h e l p f u l way o f managing u n c e r t a i n t y . O t h e r s found t h a t t h e i r d i s t r e s s was reduced u s i n g a v o i d a n c e s t r a t e g i e s such as removing t h e t h o u g h t s about t h e s u r g e r y from t h e i r minds. Some p a t i e n t s f r e q u e n t l y evoked t h e power o f God t o s u s t a i n t h e m s e l v e s d u r i n g t i m e s o f doubt. Others s u s t a i n e d t h e i r h o p e f u l n e s s by l o o k i n g f o r s i g n s o f good l u c k . F i n d i n g s a l s o i n d i c a t e d t h a t p a t i e n t s were aware of t h e p o s s i b i l i t y t h a t a k i d n e y would never become a v a i l a b l e o r i t was f a r o f f i n t h e f u t u r e . As a p r o t e c t i v e mechanism, p a t i e n t s tempered t h e i r hope w i t h t h e knowledge of t h e r e a l i t y o f t h e s i t u a t i o n . Summary of t h e Review o f t h e L i t e r a t u r e I t i s ap p a r e n t from t h i s s e l e c t e d r e v i e w o f t h e l i t e r a t u r e t h a t u n c e r t a i n t y i s an i m p o r t a n t concept and r e l e v a n t t o t h e e x p e r i e n c e o f l i v i n g w i t h a k i d n e y t r a n s p l a n t . Managing t h i s u n c e r t a i n t y i s an e s s e n t i a l t a s k and judgements made under c o n d i t i o n s of u n c e r t a i n t y a r e p a r t i c u l a r l y r e l e v a n t f o r p a t i e n t s i n t h i s s i t u a t i o n . The d i a g n o s i s o f ESRD may be c e r t a i n , but t r e a t m e n t e f f i c a c y , as w e l l as t h e e f f e c t t r e a t m e n t may have on a c t i v i t i e s o f d a i l y l i f e a r e o f t e n l e s s c l e a r . S t u d i e s h i g h l i g h t e d t h e 40 u n c e r t a i n t y o f t h e f u t u r e as h i g h l y s t r e s s f u l f o r d i a l y s i s and t r a n s p l a n t p a t i e n t s because p a t i e n t s r e c o g n i z e d t h e i r i n a b i l i t y t o c o n t r o l t h e i r r e s p e c t i v e t r e a t m e n t s f o r k i d n e y d i s e a s e . I n a d d i t i o n , t h e 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 may a l s o c r e a t e u n c e r t a i n t y when such symptoms a r e m i s i n t e r p r e t e d as s i g n s o f t r e a t m e n t f a i l u r e . W h i l e o n l y one s t u d y e x p l o r e d s t r e s s e x p e r i e n c e d by k i d n e y t r a n s p l a n t p a t i e n t s and i n d i c a t e d u n c e r t a i n t y o f t h e f u t u r e was a h i g h r a n k i n g s t r e s s o r , f i n d i n g s a l s o i n d i c a t e d t h a t p a t i e n t s may e x p e r i e n c e c o n t i n u i n g s t r e s s o r s o f moderate i n t e n s i t y as l o n g as f o u r y e a r s p o s t - t r a n s p l a n t . However, l i t t l e i n f o r m a t i o n r e g a r d i n g t h e n a t u r e and degree o f u n c e r t a i n t y i s known f o r l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s . C o p i n g w i t h a k i d n e y t r a n s p l a n t i s a complex p r o c e s s about w h i c h l i t t l e i n f o r m a t i o n has been o b t a i n e d . To manage s t r e s s f u l e v e n t s , d i f f e r e n t modes of c o p i n g a r e employed w h i c h s e r v e two bro a d f u n c t i o n s . The f u n c t i o n o f p r o b l e m - f o c u s e d s t r a t e g i e s i s t o a l t e r t h e t r o u b l e d person-environment r e l a t i o n s h i p . I n a d d i t i o n , e m o t i o n - r e g u l a t i n g s t r a t e g i e s may be d i r e c t e d a t t h e s e l f o r environment i n o r d e r t o manage emotions. A l t h o u g h an e x p l o r a t i o n and a n a l y s i s o f t h e l i t e r a t u r e s u g g e s t e d t h a t t r e a t m e n t o f ESRD i s a " s t r e s s f u l " e x p e r i e n c e , l i t t l e s u b s t a n t i v e e v i d e n c e was found t h a t i n d i c a t e d t h e ways t h a t l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s cope w i t h t h a t p e r c e i v e d s t r e s s . The f i v e main forms o f c o p i n g d e s c r i b e d i n t h e l i t e r a t u r e i n c l u d e d i n f o r m a t i o n s e e k i n g , d i r e c t a c t i o n , i n h i b i t i o n o f a c t i o n , i n t r a p s y c h i c o r c o g n i t i v e p r o c e s s e s , and t u r n i n g t o o t h e r s . Each form s e r v e s b o t h p r o b l e m - s o l v i n g and emo t i o n -41 r e g u l a t i n g f u n c t i o n s . S t u d i e s were found t h a t e x p l o r e d c o p i n g s t r a t e g i e s o f p a t i e n t s w i t h ESRD. To manage s t r e s s o r s a s s o c i a t e d w i t h d i a l y s i s and t r a n s p l a n t a t i o n , o v e r a l l , i t was found t h a t ESRD p a t i e n t s used p r o b l e m - o r i e n t e d s t r a t e g i e s s i g n i f i c a n t l y more t h a n e m o t i o n -o r i e n t e d ( a f f e c t i v e ) forms o f c o p i n g . A l t h o u g h no s t u d i e s of t r a n s p l a n t p a t i e n t s have a d d r e s s e d t h e r e l a t i o n s h i p o f u n c e r t a i n t y t o c o p i n g s t r a t e g i e s , t h e l i t e r a t u r e s u g g e s t e d t h a t u n c e r t a i n t y i s s t r e s s f u l and can i n f l u e n c e c o p i n g s t r a t e g i e s an i n d i v i d u a l uses t o d e a l w i t h c h r o n i c i l l n e s s and i t s t r e a t m e n t . Based on t h e gaps i d e n t i f i e d i n t h e l i t e r a t u r e , t h e f o l l o w i n g s t u d y a d d r e s s e d : t h e n a t u r e and degree o f u n c e r t a i n t y ; t h e c o p i n g s t r a t e g i e s used; and t h e r e l a t i o n s h i p between u n c e r t a i n t y and c o p i n g s t r a t e g i e s i n l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s . I n t h e f o l l o w i n g c h a p t e r , t h e method and p r o c e d u r e s t h a t were used t o g u i d e t h i s s t u d y a r e d e s c r i b e d and p r e s e n t e d . CHAPTER THREE Methods I n t r o d u c t i o n I n t h i s c h a p t e r t h e r e s e a r c h d e s i g n , s a m p l i n g p r o c e d u r e , d a t a c o l l e c t i o n i n s t r u m e n t s , d a t a c o l l e c t i o n p r o c e d u r e s , l i m i t a t i o n s , e t h i c a l c o n s i d e r a t i o n s , and t h e s t a t i s t i c a l p r o c e d u r e s used f o r d a t a a n a l y s i s a r e p r e s e n t e d and d e s c r i b e d . Research D e s i g n A d e s c r i p t i v e c o r r e l a t i o n a l d e s i g n was used t o i d e n t i f y t h e l e v e l o f u n c e r t a i n t y and t h e use o f s p e c i f i c c o p i n g s t r a t e g i e s by l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s i n a d d i t i o n t o d e s c r i b i n g t h e r e l a t i o n s h i p between u n c e r t a i n t y and c o p i n g s t r a t e g i e s . A d e s c r i p t i v e c o r r e l a t i o n a l d e s i g n was chosen f o r t h i s s t u d y because of a l a c k of p r e v i o u s r e s e a r c h i n t h e a r e a (Burns & Grove, 1987). Sampling P r o c e d u r e The t a r g e t p o p u l a t i o n f o r t h i s s t u d y was a d u l t k i d n e y t r a n s p l a n t p a t i e n t s w i t h a l o n g - t e r m g r a f t l i v i n g i n t h e p r o v i n c e of B r i t i s h C o lumbia. The a c c e s s i b l e p o p u l a t i o n f o r t h i s s t u d y were p a t i e n t s b e i n g f o l l o w e d t h r o u g h t h e P o s t - R e n a l T r a n s p l a n t C l i n i c o f a q u a t e r n a r y c a r e h o s p i t a l i n t h e Lower M a i n l a n d . The sample c o n s i s t e d o f 88 s u b j e c t s s e l e c t e d t h r o u g h c o n v e n i e n c e s a m p l i n g . The number of s u b j e c t s r e q u i r e d was c a l c u l a t e d a c c o r d i n g t o Cohen (1977) f o r t h e Pearson's P r o d u c t Moment C o r r e l a t i o n C o e f f i c i e n t . Based upon t h i s c a l c u l a t i o n , 84 s u b j e c t s were d e t e r m i n e d as t h e i d e a l sample s i z e t o t e s t t h e s i g n i f i c a n c e o f a c o r r e l a t i o n o f r =.30, based on a power o f .80, 43 a medium e f f e c t s i z e o f .30, and a s i g n i f i c a n c e l e v e l o f .05, u s i n g a t w o - t a i l e d t e s t . S u b j e c t s s e l e c t e d f o r i n c l u s i o n i n t h e s t u d y met t h e f o l l o w i n g c r i t e r i a : 1. The s u b j e c t s were t r a n s p l a n t e d w i t h e i t h e r a l i v i n g donor o r c a d a v e r i c donor k i d n e y t r a n s p l a n t . 2. The s u b j e c t s were t r a n s p l a n t e d between 1968 and J u l y 1987. 3. The s u b j e c t s were 19 y e a r s of age a t t i m e o f t r a n s p l a n t a t i o n . 4. The s u b j e c t s were l i t e r a t e i n t h e E n g l i s h language. 5. The s u b j e c t s were r e s i d e n t s o f t h e p r o v i n c e o f B r i t i s h C o lumbia. The c r i t e r i o n of age was e s t a b l i s h e d f o r t h e purpose o f l i m i t i n g t h e f o c u s o f t h e s t u d y t o t h e a d u l t k i d n e y t r a n s p l a n t p a t i e n t . The c r i t e r i o n of t h r e e o r more y e a r s was e s t a b l i s h e d so t h a t a l l s u b j e c t s were a t a r e l a t i v e l y s t a b l e s t a g e p o s t k i d n e y t r a n s p l a n t . L i t e r a c y i n t h e E n g l i s h language was n e c e s s a r y as s u b j e c t s would need t o answer a w r i t t e n q u e s t i o n n a i r e . Data C o l l e c t i o n I n s t r u m e n t s Three d a t a c o l l e c t i o n i n s t r u m e n t s were used i n t h i s s t u d y . The U n c e r t a i n t y S t r e s s S c a l e (USS) d e v e l o p e d by H i l t o n was used t o measure u n c e r t a i n t y (Appendix B ) . The r e v i s e d J a l o w i e c (1987) C o p i n g S c a l e (JCS) was used t o measure c o p i n g (Appendix A ) . F i n a l l y , t h e P a t i e n t I n f o r m a t i o n Sheet, d e s i g n e d by t h e r e s e a r c h e r was used t o c o l l e c t r e l e v a n t demographic, h e a l t h and t r a n s p l a n t h i s t o r y d a t a (Appendix C ) . 44 U n c e r t a i n t y S t r e s s S c a l e (USS) The U n c e r t a i n t y S t r e s s S c a l e ( H i l t o n , 1988a) c o n s i s t s o f t h r e e p a r t s w h i c h measure t h e degree and s t r e s s o f u n c e r t a i n t y . The f i r s t p a r t o f t h e s c a l e c o n s i s t s o f 60 items and asks p a r t i c i p a n t s how t h e y judge t h e i r degree o f u n c e r t a i n t y about a number o f a r e a s r e l a t e d t o t h e i r c u r r e n t k i d n e y c o n d i t i o n . I t uses a f i v e p o i n t s c a l e from 1 i n d i c a t i n g *no u n c e r t a i n t y ' t o 5 i n d i c a t i n g 'a g r e a t d e a l of u n c e r t a i n t y ' . The second p a r t o f t h e s c a l e a s ks p a r t i c i p a n t s t o rank t h e i r degree o f s t r e s s t h e y f e e l r e l a t e d t o t h e u n c e r t a i n t y i d e n t i f i e d f o r each o f t h e 60 i t e m s . P a r t two a l s o uses a f i v e p o i n t s c a l e from 1 i n d i c a t i n g 'no s t r e s s ' t o 5 i n d i c a t i n g 'a g r e a t d e a l o f s t r e s s ' . T h i s i s t h e o n l y i n s t r u m e n t t h a t e x i s t s t o d a t e t h a t measures t h e degree o f s t r e s s g e n e r a t e d by u n c e r t a i n t y . The t h i r d p a r t o f t h e i n s t r u m e n t i s a measurement of g l o b a l u n c e r t a i n t y , g l o b a l s t r e s s , g l o b a l t h r e a t , and p e r c e p t i o n o f t h e p o s i t i v e f e e l i n g s ( o p p o r t u n i t y ) from t h e i r u n c e r t a i n t y s t a t e u s i n g v i s u a l analogue s c a l e s . The t o t a l USS i s p r e s e n t e d i n Appendix B. O r i g i n a l l y , t h e s c a l e was d e s i g n e d f o r c a n c e r p a t i e n t s . Item development f o r t h e USS was based upon H i l t o n ' s (1987) p h e n o m e n o l o g i c a l s t u d y o f women c o p i n g w i t h b r e a s t c a n c e r and a t h e o r e t i c a l and e m p i r i c a l l i t e r a t u r e r e v i e w . From t h e phenomenology r e s e a r c h , a r e a s o f u n c e r t a i n t y i n c l u d e d : n ot b e i n g a b l e t o f o r e t e l l t h e f u t u r e ; not f e e l i n g s e c u r e and s a f e from danger; b e i n g i n doubt; b e i n g u n d e c i d e d ; p e r c e p t i o n s o f vagueness; and, not b e i n g a b l e t o r e l y o r count on someone o r something. The o r i g i n a l v e r s i o n of t h e USS c o n s i s t e d o f 55 i t e m s 45 and asked p a r t i c i p a n t s how t h e y judged t h e i r degree o f u n c e r t a i n t y r e l a t e d t o t h e i r c a n c e r s i t u a t i o n and used a L i k e r t ' s t r o n g l y d i s a g r e e ' t o ' s t r o n g l y agree' format. C o n t e n t v a l i d a t i o n o f t h e items was done and r e v i s i o n s were made based on t h e feedback from e x p e r t s i n c l u d i n g n u r s e s , c a n c e r p a t i e n t s , d o c t o r s , p s y c h o m e t r i c i a n s and r e s e a r c h e r s on u n c e r t a i n t y . I n a p i l o t s t u d y conducted by H i l t o n , t h e o r i g i n a l v e r s i o n was s e n t t o 300 c a n c e r p a t i e n t s . A . f a c t o r a n a l y s i s was c o n d u c t e d and i n d i c a t e d 8 f a c t o r s w h i c h were r e f i n e d t o 4 s t r o n g e r s u b s c a l e s each w i t h a t l e a s t 10 i t e m s . I n t e r n a l c o n s i s t e n c y a l p h a c o e f f i c i e n t s ranged from .50 t o .74 ( H i l t o n , 1988a). W h i l e f u r t h e r r e f i n e m e n t was b e i n g c a r r i e d o u t , i t was th o u g h t t h a t t h e u n c e r t a i n t y i n s t r u m e n t might be a p p r o p r i a t e f o r p e r s o n s w i t h d i s o r d e r s o t h e r t h a n c a n c e r . To e v a l u a t e t h i s p o s s i b i l i t y , t h e i n s t r u m e n t was a d m i n i s t e r e d t o p e o p l e w i t h c a r d i a c , v a s c u l a r , and r e n a l d i s o r d e r s ; p a r t i c i p a n t s were t h e n i n t e r v i e w e d f o r t h e i r p e r c e p t i o n s o f t h e a p p r o p r i a t e n e s s o f i t e m s . C o n t e n t v a l i d a t i o n o f t h e ite m s was done and r e v i s i o n s were made based on t h e comments from p a r t i c i p a n t s i n o r d e r t o make t h e ite m s a p p r o p r i a t e f o r t h e i r s i t u a t i o n . I n a d d i t i o n , l i t e r a t u r e f o r t h e s e c o n d i t i o n s was r e v i e w e d t o i d e n t i f y any f u r t h e r a r e a s o f p o t e n t i a l u n c e r t a i n t y . Based on t h i s a n a l y s i s , H i l t o n c o n c l u d e d t h a t t h e i n s t r u m e n t would be a p p r o p r i a t e f o r p e o p l e w i t h o t h e r d i s o r d e r s by c h a n g i n g t h e name o f t h e d i s o r d e r i n t h e i t e m s . Items from t h e o r i g i n a l v e r s i o n o f t h e USS were r e f i n e d and r e s u l t e d i n 48 - i t e m i n s t r u m e n t ( v e r s i o n 2 ) . T h i s t o o l was t e s t e d w i t h 200 c a n c e r . p a t i e n t s , 94 k i d n e y t r a n s p l a n t p a t i e n t s , 120 v a s c u l a r p a t i e n t s , and 10 c a r d i a c p a t i e n t s . V e r s i o n 2 measured f o u r a s p e c t s o f u n c e r t a i n t y : l a c k o f c l a r i t y i n i n t e r p r e t a t i o n and u n d e r s t a n d i n g o f t h e s i t u a t i o n (12 i t e m s ) ; n o t b e i n g a b l e t o f o r e t e l l t h e f u t u r e i n terms o f symptoms and outcomes (13 i t e m s ) ; d e p e n d a b i l i t y / r e l i a b i l i t y (11 i t e m s ) , and b e i n g i n c l i n e d t o d i s b e l i e f , doubts about c h o i c e s , t r e a t m e n t s , s t r a t e g i e s , and b e h a v i o u r s (12 i t e m s ) . F o r d (1989) used v e r s i o n 2 o f t h e USS i n her t h e s i s e n t i t l e d " U n c e r t a i n t y Over Time and I t s R e l a t i o n s h i p t o L i f e S a t i s f a c t i o n f o r B i o l o g i c a l V a l v e P a t i e n t s " . A c o n v e n i e n c e sample o f 121 s u b j e c t s responded t o t h e s c a l e who had t h e i r f i r s t b i o l o g i c a l v a l v e i m p l a n t e d a t l e a s t 12 months p r i o r t o t h e s t u d y . I n t e r n a l c o n s i s t e n c y r e l i a b i l i t y o f t h e t o t a l s c a l e was .92 and each o f t h e f a c t o r s had a l p h a c o e f f i c i e n t s w h i c h ranged from .67 t o .81 i l l u s t r a t i n g good i n t e r n a l c o n s i s t e n c y . A major r e v i s i o n o f t h e i n s t r u m e n t c o n s i s t e d o f c h a n g i n g t h e re s p o n s e s c a l e from a s t r o n g l y d i s a g r e e - s t r o n g l y agree format t o a no u n c e r t a i n t y - g r e a t d e a l of u n c e r t a i n t y f o r m a t . T h i s was done because o f d i f f i c u l t y n o t e d i n t h e L i k e r t format ( t o d i s a g r e e w i t h a n e g a t i v e l y worded i t e m caused c o n f u s i o n ) . I n a d d i t i o n , i t was f e l t by e x p e r t s t h a t some items s h o u l d be broke n down f u r t h e r t o e l i m i n a t e a m b i g u i t y . F o r example, p a t i e n t s o f t e n c o n s u l t e d b o t h t h e i r g e n e r a l p r a c t i t i o n e r and s p e c i a l i s t ( s ) f o r h e a l t h and m e d i c a l problems a s s o c i a t e d w i t h t h e i r c o n d i t i o n . Items w h i c h i n c l u d e d t h e l a b e l ' d o c t o r ' were t h e r e f o r e not c l e a r , so two it e m s r a t h e r t h a n one were i n s e r t e d t o address t h i s p r oblem. Based upon t h e s e r e v i s i o n s , t h e most r e c e n t v e r s i o n o f t h e USS 47 ( v e r s i o n 3) r e s u l t e d w h i c h c o n s i s t s of 6 0 - i t e m s . H i l t o n (1988a) a d m i n i s t e r e d v e r s i o n 3 t o a group o f c a n c e r p a t i e n t s . A f a c t o r a n a l y s i s f o l l o w e d by o r t h o g o n a l (Varimax) r o t a t i o n was c o n ducted and r e s u l t e d i n a f i v e - f a c t o r s o l u t i o n . T h i r t y p e r c e n t of t h e v a r i a n c e was a c c o u n t e d f o r by t h e f i v e f a c t o r s . These f a c t o r s i m p l i e d somewhat d i f f e r e n t a s p e c t s o f u n c e r t a i n t y : i n d e f i n i t e n e s s - not b e i n g c l e a r l y d e f i n e d o r p r e c i s e (20 i t e m s ) ; p r o b a b i l i t y - i n f e r r i n g t h e l i k e l i h o o d o f chance o r something happening o r b e i n g t r u e (8 i t e m s ) ; r e l i a b i l i t y o r d e p e n d a b i l i t y - not b e i n g a b l e t o t r u s t i n a chievement, a c c u r a c y , o r h o n e s t y (17 i t e m s ) ; d o u b t f u l - h o l d i n g q u e s t i o n a b l e , d i s t r u s t i n g , h e s i t a t i n g t o b e l i e v e , b e i n g u n d e c i d e d i n o p i n i o n o r b e l i e f (7 i t e m s ) ; and i n d e t e r m i n a t e n e s s - not b e i n g f i x e d o r c l e a r , b e i n g u n s e t t l e d (8 i t e m s ) . Each of t h e f i v e f a c t o r s had i n t e r n a l c o n s i s t e n c y r e l i a b i l i t i e s w h i c h ranged from .78 t o .95 i n d i c a t i n g good homogeneity. A d e s c r i p t i o n o f t h e f a c t o r s and t h o s e items which b e l o n g t o each a r e a o f u n c e r t a i n t y a r e p r e s e n t e d i n Appendix D. I n t h e p r e s e n t s t u d y , th e i n t e r n a l c o n s i s t e n c y r e l i a b i l i t y a l p h a of t h e USS was .96. The f i v e f a c t o r s had t h e f o l l o w i n g a l p h a c o e f f i c i e n t s : i n d e f i n i t e n e s s .93; p r o b a b i l i t y .82; r e l i a b i l i t y / d e p e n d a b i l i t y .86; d o u b t f u l .68; i n d e t e r m i n a t e n e s s .80 i n d i c a t i n g good i n t e r n a l c o n s i s t e n c y . V a l i d a t i o n s t u d i e s have been conducted by H i l t o n ( 1 9 9 1). To t e s t f o r c o n v e r g e n t v a l i d i t y , s u b j e c t s responded t o v e r s i o n 2 o f t h e USS and a l s o responded t o t h e M i s h e l U n c e r t a i n t y i n I l l n e s s S c a l e (community v e r s i o n ) . A c o r r e l a t i o n of .64 was found 48 between t h e s e two i n s t r u m e n t s w h i c h i n d i c a t e s t h e s c a l e s a r e not th e same, but t h a t t h e r e i s an e x p e c t e d p o s i t i v e c o r r e l a t i o n . The purpose o f t h e second v a l i d a t i o n s t u d y was t o t e s t t h e h y p o t h e s i s t h a t women w i t h a r e c u r r e n c e of b r e a s t c a n c e r would p e r c e i v e more u n c e r t a i n t y t h a n women where no r e c u r r e n c e o c c u r r e d . These two c o n t r a s t e d groups were compared and a s i g n i f i c a n t d i f f e r e n c e was found between t h e women i n t h e s e groups. I n a d d i t i o n , l e v e l of u n c e r t a i n t y was compared f o r women w i t h d i f f e r e n t e x t e n t s o f c a n c e r . Women w i t h c a n c e r t h a t was l o c a l i z e d had t h e l o w e s t u n c e r t a i n t y (M = 114) compared t o t h o s e where t h e c a n c e r was found i n t h e lymph nodes (M = 135) and t h o s e where c a n c e r was found e l s e w h e r e (M = 141). In a n o t h e r v a l i d a t i o n s t u d y , H i l t o n (1991) t e s t e d t h e h y p o t h e s i s about t h e r e l a t i o n s h i p between p e r c e i v e d c o n t r o l and u n c e r t a i n t y . The r e s u l t s i n d i c a t e d t h a t u n c e r t a i n t y was n e g a t i v e l y c o r r e l a t e d t o c o n t r o l ( r =-.20, p =.04). A p r e d i c t i o n s t u d y u s i n g v e r s i o n 3 i s c u r r e n t l y i n p r o g r e s s . Women who a r e b e i n g d i a g n o s e d f o r a s u s p i c i o u s b r e a s t lump a r e b e i n g f o l l o w e d and t e s t e d p r i o r t o b i o p s y , a f t e r b i o p s y when r e s u l t s a r e known and the n i f t h e d i a g n o s i s i s c a n c e r , t h e y a r e t e s t e d a f t e r d e f i n i t i v e s u r g e r y , and f i n a l l y 3 months l a t e r . H i l t o n p r e d i c t e d t h a t t h e s e women would i n i t i a l l y s c o r e h i g h on t h e i r u n c e r t a i n t y and t h a t i f t h e lump was b e n i g n , t h e r e would be a s i g n i f i c a n t drop i n t h e i r u n c e r t a i n t y . I n a d d i t i o n , i t was p r e d i c t e d t h a t t h e r e would be a s i g n i f i c a n t d i f f e r e n c e between t h o s e where t h e lump was b e n i g n and t h o s e where i t was found t o be c a n c e r o u s . F o r t h o s e where t h e d i a g n o s i s was c a n c e r , t h e i r u n c e r t a i n t y would remain h i g h and would a l s o be r e l a t i v e l y h i g h 3 months l a t e r b ut l i k e l y l o w e r t h a n p r i o r t o b i o p s y . I t was however somewhat u n c l e a r how t o p r e d i c t t h e s c o r e s f o r women 3 months p o s t b i o p s y . To d a t e , t h e s e d a t a show t h a t l e v e l o f u n c e r t a i n t y p r i o r t o b i o p s y was h i g h . The mean s c o r e was 120 i l l u s t r a t i n g c o n s i d e r a b l e u n c e r t a i n t y . P o s t b i o p s y mean u n c e r t a i n t y f o r t h o s e women where t h e lump was b e n i g n was 84 and f o r t h o s e women where i t was c a n c e r , t h e u n c e r t a i n t y l e v e l was 110. There was a s i g n i f i c a n t d i f f e r e n c e between them (p_ =.019) and t h e r e was a s i g n i f i c a n t change f o r t h o s e where t h e d i a g n o s i s was b e n i g n . A f t e r d e f i n i t i v e s u r g e r y and t h e n 3 months l a t e r , mean u n c e r t a i n t y was 109 and 119 r e s p e c t i v e l y . S c o r i n g i n t h e p r e s e n t s t u d y c o n s i s t s o f c a l c u l a t i n g a t o t a l u n c e r t a i n t y s c o r e by summing each s u b j e c t ' s r e s p o n s e t o t h e u n c e r t a i n t y s c a l e . A t o t a l s t r e s s s c o r e c o n s i s t s o f summing each s u b j e c t ' s r e s p o n s e t o t h e s t r e s s s c a l e . I n a d d i t i o n , each o f t h e f o u r v i s u a l analogue s c a l e s i s 100 mm l o n g where s c o r i n g c o n s i s t s o f s u b j e c t s p l a c i n g a mark on t h e s c a l e i n d i c a t i n g t h e i r degree of t h e a s p e c t ( u n c e r t a i n t y , s t r e s s , t h r e a t , o p p o r t u n i t y ) measured. A l s o , s u b s c a l e s c o r e s were c a l c u l a t e d and c o n s i s t e d o f summing each s u b j e c t ' s r e s ponse t o each o f t h e f i v e f a c t o r s i n d i c a t i n g a r e a s o f u n c e r t a i n t y . J a l o w i e c C o p i n g S c a l e (JCS) In t h e p r e s e n t s t u d y , c o p i n g was measured u s i n g t h e r e v i s e d 6 0 - i t e m J a l o w i e c (1987) Coping S c a l e . The o r i g i n a l v e r s i o n o f t h e JCS has been used w i d e l y i n n u r s i n g r e s e a r c h . As t h e r e v i s e d v e r s i o n i s based on t h e o r i g i n a l JCS, i n f o r m a t i o n on t h e 50 development and p s y c h o m e t r i c p r o p e r t i e s o f t h e o r i g i n a l v e r s i o n i s i n c l u d e d i n t h e d e s c r i p t i o n o f t h e i n s t r u m e n t . The J a l o w i e c Coping S c a l e was o r i g i n a l l y d e v e l o p e d as a means o f e x a m i n i n g t h e c o p i n g s t r a t e g i e s used by h y p e r t e n s i v e and emergency room p a t i e n t s ( J a l o w i e c , 1979). T h i s o r i g i n a l v e r s i o n o f t h e JCS c o n s i s t e d of 40 items where each i t e m was r a t e d on a 5 - p o i n t s c a l e i n d i c a t i n g degree of use. Item development was based upon a comprehensive and c r i t i c a l r e v i e w o f t h e s t r e s s , c o p i n g , and a d a p t a t i o n l i t e r a t u r e . C o ntent v a l i d i t y o f t h e i n s t r u m e n t i s s u b s t a n t i a t e d by t h e s y s t e m a t i c manner of t o o l development, t h e l a r g e number of items used t o t a p t h e c o n c e p t u a l domain, t h e i n c l u s i o n o f d i v e r s e c o p i n g b e h a v i o u r s , and t h e b r o a d l i t e r a t u r e base from which items were drawn ( J a l o w i e c , Murphy, & Powers, 1984). Items were c l a s s i f i e d as problem o r a f f e c t i v e c o p i n g by a p a n e l o f n u r s i n g f a c u l t y and g r a d u a t e s t u d e n t s . O v e r a l l agreement on t h e c l a s s i f i c a t i o n was 85%, w i t h g r e a t e r consensus on problem (88%) items t h a n on a f f e c t i v e ( 8 3 % ) . R e l i a b i l i t y was e v a l u a t e d by t e s t - r e t e s t u s i n g 28 s u b j e c t s from a g e n e r a l p o p u l a t i o n and found m o d e r a t e l y s t r o n g c o r r e l a t i o n s f o r t o t a l c o p i n g s c o r e s (rho =.79), f o r p r oblem o r i e n t e d s c o r e s ( r h o =.85), and f o r a f f e c t i v e - o r i e n t e d s c o r e s ( r h o =.86) ( J a l o w i e c e t a l . , 1984). O v e r a l l homogeneity of t h e c o n t e n t of t h e s c a l e i s s u p p o r t e d w i t h Cronbach's a l p h a o f .86 (n = 141) f o r h y p e r t e n s i v e and emergency room p a t i e n t s , a g e n e r a l p o p u l a t i o n , and d i a l y s i s p a t i e n t s and .80 f o r l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s (n = 40) ( S u t t o n & Murphy, 1989). Instrument homogeneity i s f u r t h e r 51 s u p p o r t e d by t h e s u b s t a n t i a l c o r r e l a t i o n s between s u b s c a l e s c o r e s and t o t a l s c a l e s c o r e s . B a l d r e e and c o l l e a g u e s (1982) o b t a i n e d c o r r e l a t i o n s o f .77 between p r o b l e m - o r i e n t e d s c o r e s and t o t a l c o p i n g s c o r e s and .82 between a f f e c t i v e - o r i e n t e d s c o r e s and t o t a l c o p i n g s c o r e s . To f u r t h e r s u b s t a n t i a t e t h e c o n s t r u c t v a l i d i t y o f t h e i n s t r u m e n t and d e l i n e a t e t h e d i m e n s i o n s u n d e r l y i n g c o p i n g s t r a t e g i e s , f a c t o r a n a l y s i s was performed by J a l o w i e c and c o l l e a g u e s (1984) on c o p i n g s c a l e d a t a from t h e sample of 141 s u b j e c t s d e s c r i b e d p r e v i o u s l y . Two f a c t o r and f o u r f a c t o r models were e v a l u a t e d . A t w o - f a c t o r a n a l y s i s i n d i c a t e d t h a t c o p i n g b e h a v i o u r was more m u l t i d i m e n s i o n a l t h a n dichotomous, e s p e c i a l l y i n r e l a t i o n t o t h e a f f e c t i v e domain. A f o u r - f a c t o r model p r o v i d e d t h e most m e a n i n g f u l c o n c e p t u a l p a t t e r n w i t h t h e l e a s t l o s s o f i n f o r m a t i o n . S u i t a b l e l a b e l s f o r each of t h e s e f a c t o r s were s u g g e s t e d : F a c t o r I c o g n i t i v e , p r o b l e m - r e s o l v i n g , autonomy o r i e n t e d , g o a l - d i r e c t e d , p u r p o s i v e , o r r e a l i t y - o r i e n t e d ; F a c t o r I I t e n s i o n - m o d u l a t i n g , a v o i d a n t / e v a s i v e , m o r a l e - m a i n t a i n i n g , a c q u i e s c e n t , o r p a l l i a t i v e ; F a c t o r I I I p o w e r l e s s n e s s , p e s s i m i s t i c , i m p o t e n c y - r e l a t e d , n u g a t o r y , o r r e g r e s s i v e ; F a c t o r IV o t h e r - d i r e c t e d , dependency-o r i e n t e d , s u p p o r t - r e l a t e d , o r l i n k a g e - d i r e c t e d . A l p h a c o e f f i c i e n t s o b t a i n e d f o r each f a c t o r were .86, .73, .75, and .55. J a l o w i e c (1988) conducted a c o n f i r m a t o r y f a c t o r a n a l y s i s t o g e n e r a t e more d e f i n i t e r e s u l t s on t h e c o n s t r u c t o f t h e JCS and d e r i v e a u s e f u l c o n c e p t u a l framework f o r t h e s c a l e . The sample 52 f o r t h i s v a l i d a t i o n s t u d y was o r i g i n a l l y c o l l e c t e d by 22 i n v e s t i g a t o r s i n 10 s t a t e s and c o n s i s t e d o f : p a t i e n t s (n = 790); n u r s e s (n = 353); f a m i l y members o f p a t i e n t s (n = 133); and g r a d u a t e s t u d e n t s (n = 124). The p a t i e n t c o m p o s i t i o n i n c l u d e d h y p e r t e n s i v e s , d i a l y s i s p a t i e n t s , c a r d i a c p a t i e n t s , a b o r t i o n p a t i e n t s , n o n s e r i o u s emergency room p a t i e n t s , p e r s o n s on p a r e n t e r a l n u t r i t i o n a t home, e p i l e p t i c p a t i e n t s , a r t h r i t i c s , p a t i e n t s w i t h c h r o n i c o b s t r u c t i v e l u n g d i s e a s e , q u a d r i p l e g i c s , c a n c e r p a t i e n t s , and d i a b e t i c s . Of t h e models t e s t e d w i t h LISREL, r e s u l t s s u g g e s t e d a t h r e e f a c t o r s o l u t i o n . C o n c e p t u a l e x a m i n a t i o n o f t h i s model s u g g e s t e d t h e l a b e l s o f c o n f r o n t i v e , e m o t i v e , and p a l l i a t i v e f o r t h e t h r e e c o p i n g d i m e n s i o n s . Coping s t r a t e g i e s t h a t l o a d e d h i g h l y on F a c t o r I ( c o n f r o n t i v e ) f o c u s e d on c o n s t r u c t i v e h a n d l i n g o f t h e s t r e s s f u l s i t u a t i o n and f a c i n g up t o t h e problem. The most r e l i a b l e i n d i c a t o r s f o r F a c t o r I I (emotive) i n c l u d e d t h o s e s t r a t e g i e s a p e r s o n used t h a t e x p r e s s e d emotion evoked by t h e s i t u a t i o n and a l l o w e d f o r t h e v e n t i l a t i o n o f f e e l i n g s . Items w h i c h l o a d e d on F a c t o r I I I ( p a l l i a t i v e ) s u g g e s t e d s t r a t e g i e s t h a t eased t h e s t r e s s o r ke p t t h e s i t u a t i o n under c o n t r o l w i t h o u t d i r e c t l y c u r i n g o r t a k i n g c a r e of t h e problem. F o r t h e t h r e e f a c t o r s t h e a l p h a s were .85, .70, and .75. W i k o f f and M i l l e r (1989) a l s o i n v e s t i g a t e d t h e v a l i d i t y o f t h e JCS i n a p o p u l a t i o n d i f f e r e n t from t h a t used by J a l o w i e c . The sample f o r t h i s v a l i d a t i o n s t u d y was spouses o f 210 c a r d i a c s u r g e r y p a t i e n t s from s i x g e o g r a p h i c r e g i o n s i n t h e U n i t e d S t a t e s . The s c a l e i t e m means were a n a l y z e d by p r i n c i p a l 53 o r t h o g o n a l (Varimax) r o t a t i o n . These r e s e a r c h e r s found t h a t t h e t h r e e - f a c t o r s o l u t i o n was t h e most a p p r o p r i a t e and most e a s i l y i n t e r p r e t e d . A l i t t l e o v e r 31% of t h e v a r i a n c e was a c c o u n t e d f o r by t h e t h r e e f a c t o r s . The t h r e e f a c t o r s i d e n t i f i e d i n t h i s s t u d y a g r e e d w i t h t h e f a c t o r s r e p o r t e d by J a l o w i e c (1988). A l p h a c o e f f i c i e n t s were .84, .70, and .74 r e s p e c t i v e l y . Based on t h e p r e v i o u s p s y c h o m e t r i c s t u d i e s , t h e c o p i n g s c a l e was expanded from 40 t o 60 i t e m s . Some o f t h e i t e m s from t h e o r i g i n a l s c a l e were e l i m i n a t e d , some were combined, some were reworded, and new items were added. The r e v i s e d v e r s i o n o f t h e JCS asks p a r t i c i p a n t s t o rank how o f t e n t h e y have used each o f t h e 60 s t r a t e g i e s t o cope w i t h t h e i r s i t u a t i o n . A 4 - p o i n t r a t i n g s c a l e r a n g i n g from 0 'never used' t o 3 ' o f t e n used' r e p l a c e s t h e p r e v i o u s 5 - p o i n t response format. I n a d d i t i o n , an e f f e c t i v e n e s s r a t i n g s c a l e has been added t o t h e i n s t r u m e n t . P a r t i c i p a n t s a r e asked t o rank how h e l p f u l each s t r a t e g y t h a t t h e y have used has been i n c o p i n g w i t h t h e i r s i t u a t i o n . T h i s e f f e c t i v e n e s s s c a l e a l s o uses a 4 - p o i n t r a t i n g s c a l e r a n g i n g from 0 'not h e l p f u l ' t o 3 'very h e l p f u l ' . The t o t a l JCS i s p r e s e n t e d i n Appendix A. The c o p i n g items of t h e r e v i s e d v e r s i o n were examined r a t i o n a l l y t o d e t e r m i n e common c o n c e p t u a l themes; e i g h t c o p i n g s t y l e s e v o l v e d as t h e most d e s c r i p t i v e of t h e c o p i n g d i m e n s i o n s r e p r e s e n t e d by t h e 60 i t e m s . J a l o w i e c (1989) d e s c r i b e d t h e e i g h t c o p i n g s t y l e s : c o n f r o n t i v e c o p i n g - c o n s t r u c t i v e p r oblem s o l v i n g (10 i t e m s ) ; e v a s i v e c o p i n g e v a s i v e and a v o i d a n t a c t i v i t i e s (13 i t e m s ) ; o p t i m i s t i c c o p i n g - p o s i t i v e o u t l o o k (9 i t e m s ) ; f a t a l i s t i c c o p i n g p e s s i m i s t i c approach (4 i t e m s ) ; e m o t i v e c o p i n g 54 e x p r e s s i v e emotions (5 i t e m s ) ; p a l l i a t i v e c o p i n g - s t r e s s r e d u c i n g methods (7 i t e m s ) ; s u p p o r t a n t c o p i n g - s u p p o r t i v e systems (5 i t e m s ) ; s e l f - r e l i a n t c o p i n g - s e l f - i n i t i a t e d a c t i v i t i e s (7 i t e m s ) . A d e s c r i p t i o n o f t h e c o p i n g s t y l e s and t h o s e i t e m s w h i c h b e l o n g t o each c o p i n g s t y l e a r e p r e s e n t e d i n Appendix E. Good homogeneity r e l i a b i l i t y was shown on t h e r e v i s e d JCS w i t h a sample of 70 c a r d i a c t r a n s p l a n t p a t i e n t s ( J a l o w i e c , 1989). The Cronbach a l p h a r e l i a b i l i t y was r e p o r t e d as r a n g i n g from .88 t o .94 f o r t h e o v e r a l l use s c o r e and .81 t o .96 f o r t h e o v e r a l l e f f e c t i v e n e s s s c o r e o v e r f o u r t i m e p e r i o d s . A l p h a r e l i a b i l i t i e s f o r each of t h e e i g h t c o p i n g s u b s c a l e s were above .70, w i t h t h e e x c e p t i o n o f f a t a l i s t i c c o p i n g and p a l l i a t i v e c o p i n g s u b s c a l e s . Three and 6-month s t a b i l i t y - o f - u s e s c o r e s were s u p p o r t e d however, c o p i n g use s c o r e s showed l o n g e r s t a b i l i t y o v e r t i m e t h a n c o p i n g e f f e c t i v e n e s s s c o r e s . H e a r t h (1988) r e p o r t e d u s i n g t h e r e v i s e d JCS i n h e r d e s c r i p t i v e s t u d y o f 75 e l d e r l y bereaved widows and widowers. I n t e r n a l c o n s i s t e n c y a l p h a f o r t h e t o t a l use s c o r e was not s a t i s f a c t o r y (.64), but t o t a l e f f e c t i v e n e s s s c o r e was .85. A l p h a r e l i a b i l i t i e s f o r each of t h e e i g h t c o p i n g s u b s c a l e s were above .70, w i t h t h e e x c e p t i o n of t h e p a l l i a t i v e c o p i n g s u b s c a l e i n d i c a t i n g good i n t e r n a l c o n s i s t e n c y . I n t h e p r e s e n t s t u d y , t h e i n t e r n a l c o n s i s t e n c y r e l i a b i l i t y o f t h e JCS t o t a l use s c a l e was .97 and t h e t o t a l e f f e c t i v e n e s s s c a l e was .96. The e i g h t use s u b s c a l e s had t h e f o l l o w i n g a l p h a c o e f f i c i e n t s : c o n f r o n t i v e .88; e v a s i v e .89; o p t i m i s t i c .87; f a t a l i s t i c .73; emotive .76; p a l l i a t i v e .77; s u p p o r t a n t .87; s e l f - r e l i a n t .82. The e i g h t e f f e c t i v e n e s s s u b s c a l e s had t h e f o l l o w i n g a l p h a c o e f f i c i e n t s : c o n f r o n t i v e .87; e v a s i v e .85; o p t i m i s t i c .86; f a t a l i s t i c .54; emotive .72; p a l l i a t i v e .62; s u p p o r t a n t .75; s e l f - r e l i a n t .82 i n d i c a t i n g e x c e l l e n t i n t e r n a l c o n s i s t e n c y , w i t h t h e e x c e p t i o n o f f a t a l i s t i c c o p i n g and p a l l i a t i v e c o p i n g e f f e c t i v e n e s s . P r e l i m i n a r y p s y c h o m e t r i c t e s t i n g d a t a ( J a l o w i e c , 1989) s u p p o r t e d t h e p r e d i c t i v e v a l i d i t y o f t h e r e v i s e d JCS. P r e d i c t i v e v a l i d i t y was s u p p o r t e d by c o r r e l a t i o n s o f t h e JCS w i t h C o p i n g A b i l i t y R a t i n g ; g r e a t e r use of e i t h e r p a l l i a t i v e c o p i n g ( r =-.34) o r e v a s i v e c o p i n g ( r =-.70) p r e d i c t e d t h a t p a t i e n t s would f e e l t h a t t h e y were c o p i n g v e r y p o o r l y . P r e d i c t i v e v a l i d i t y was a l s o s u p p o r t e d by c o r r e l a t i o n s o f t h e JCS w i t h L e v e l o f S t r e s s R a t i n g ; g r e a t e r use o f e v a s i v e c o p i n g ( r =.37) p r e d i c t e d a h i g h e r s t r e s s l e v e l and r a t i n g c o p i n g methods as l e s s e f f e c t i v e ( r =-.89) p r e d i c t e d a h i g h e r s t r e s s l e v e l . F i n a l l y , p r e d i c t i v e v a l i d i t y was s u p p o r t e d by c o r r e l a t i o n s of t h e JCS w i t h S t r e s s o r S c a l e S c o r e ; g r e a t e r use o f e v a s i v e c o p i n g ( r =.70) p r e d i c t e d h i g h e r s c o r e s (more s t r e s s ) on s t r e s s o r s c a l e and g r e a t e r use o f s u p p o r t a n t c o p i n g ( r =-.80) p r e d i c t e d l o w e r s c o r e s on t h e s t r e s s o r s c a l e ( l e s s s t r e s s ) . S c o r i n g i n t h i s s t u d y c o n s i s t e d of c a l c u l a t i n g a s e p a r a t e use and e f f e c t i v e n e s s mean s c o r e f o r each of t h e e i g h t s u b s c a l e s m e a s u r i n g c o p i n g s t y l e s . F o r each s t r a t e g y t h a t s u b j e c t s r e p o r t e d u s i n g a t l e a s t o c c a s i o n a l l y (> = 1 ) , t h e y were asked t o rank t h e e f f e c t i v e n e s s o f t h e s t r a t e g y . 56 P a t i e n t I n f o r m a t i o n Sheet The p a t i e n t i n f o r m a t i o n s h e e t used as p a r t o f t h e q u e s t i o n n a i r e package was d e s i g n e d t o c o l l e c t r e l e v a n t demographic, h e a l t h , and s u r g i c a l d a t a from each s u b j e c t (Appendix C ) . Items i n c l u d e d i n f o r m a t i o n about s u b j e c t s ' age, gender, m a r i t a l and employment s t a t u s , e d u c a t i o n a l l e v e l , h e a l t h and m e d i c a l problems a s i d e from k i d n e y d i s e a s e , and t r a n s p l a n t h i s t o r y . Data C o l l e c t i o n P r o c e d u r e s P a r t i c i p a n t s i n t h i s s t u d y were o b t a i n e d t h r o u g h one p r o v i n c i a l p o s t - r e n a l t r a n s p l a n t c e n t r e where t h e y a t t e n d e d f o l l o w - u p c l i n i c v i s i t s l o c a t e d a t a q u a t e r n a r y c a r e h o s p i t a l . P e r m i s s i o n was g r a n t e d f o r t h e s t a f f o f The B r i t i s h Columbia T r a n s p l a n t S o c i e t y t o conduct a c o m p u t e r i z e d d a t a base s e a r c h t o i d e n t i f y a d u l t p a t i e n t s who were t r a n s p l a n t e d p r i o r t o J u l y 1987 and r e s i d e n t s o f B r i t i s h Columbia. The computer s e a r c h g e n e r a t e d a l i s t o f p a t i e n t names, a d d r e s s e s , and l a b e l s f o r m a i l i n g . The n u r s i n g s t a f f a t t h e P o s t - R e n a l T r a n s p l a n t C l i n i c r e v i e w e d each name on t h e p a t i e n t l i s t u s i n g t h e s t u d y c r i t e r i a t o a s s e s s t h e s u i t a b i l i t y o f t h e s e p a t i e n t s as s t u d y p a r t i c i p a n t s . Of t h e 172 p a t i e n t s i d e n t i f i e d t h r o u g h t h e computer s e a r c h , t h e n u r s e s deemed 22 p a t i e n t s not s u i t a b l e due t o problems w i t h E n g l i s h and i n c o m p l e t e / m i s s i n g address i n f o r m a t i o n . T h e r e f o r e , a t o t a l o f 150 e n v e l o p e s were m a i l e d . ' Stamped coded en v e l o p e s were d e l i v e r e d t o t h e c l i n i c and m a i l e d from t h e r e by s t a f f a f t e r l a b e l l i n g o f each p a c k e t . Each coded e n v e l o p e c o n t a i n e d an i n f o r m a t i o n l e t t e r (Appendix F ) , t h e q u e s t i o n n a i r e package w i t h a c o r r e s p o n d i n g code number, a p a t i e n t i n f o r m a t i o n s h e e t (Appendix C ) , a r e q u e s t f o r s t u d y r e s u l t s (Appendix G), and a r e t u r n stamped e n v e l o p e . I n f o r m a t i o n such as p a t i e n t d a t e o f b i r t h and d a t e o f c u r r e n t t r a n s p l a n t was a v a i l a b l e from t h e a c t i v e p r o f i l e f o r p a t i e n t s who were f o l l o w e d a t t h e c l i n i c . The c l i n i c n u r s e s m a i n t a i n e d a l i s t o f s u b j e c t names and c o r r e s p o n d i n g code numbers, d a t e o f b i r t h , gender, t y p e o f donor, and t r a n s p l a n t d a t e . A d u p l i c a t e of t h i s l i s t w i t h o u t p a t i e n t names was g i v e n t o t h e r e s e a r c h e r . Three weeks a f t e r t h e q u e s t i o n n a i r e s were m a i l e d , a r e m i n d e r / t h a n k you l e t t e r (Appendix H) was m a i l e d by t h e c l i n i c s t a f f . The m a i l - o u t method of d a t a c o l l e c t i o n was chosen i n o r d e r t o a c c e s s a l a r g e number of l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s who l i v e d w i t h i n t h e p r o v i n c e o f B r i t i s h C o l u m b i a . T h i s method of d a t a c o l l e c t i o n was a l s o p r a c t i c a l and c o n v e n i e n t f o r t h i s r e s e a r c h e r w i t h l i m i t e d r e s o u r c e s and t i m e c o n s t r a i n t s . Assumptions F o r t h e purpose of t h i s s t u d y , t h e f o l l o w i n g a s s u m p t i o n s were made. 1. S u b j e c t s w i l l be a b l e t o i d e n t i f y and r e c o r d p e r c e p t i o n s o f u n c e r t a i n t y and c o p i n g s t r a t e g i e s used i n r e l a t i o n t o t h e i r c u r r e n t k i d n e y t r a n s p l a n t s i t u a t i o n . 2. S u b j e c t s w i l l r espond t o t h e q u e s t i o n n a i r e h o n e s t l y and t o t h e b e s t o f t h e i r a b i l i t y . 58 L i m i t a t i o n s Many o f t h e l i m i t a t i o n s of t h i s s t u d y a r e r e l a t e d t o t h e co n v e n i e n c e s a m p l i n g p r o c e d u r e and t h e d e s i g n . The f o l l o w i n g l i m i t a t i o n s a r e r e c o g n i z e d . 1. P e r c e p t i o n s o f u n c e r t a i n t y and c o p i n g s t r a t e g i e s used were measured a t o n l y one p o i n t i n t i m e . T h e r e f o r e , t h i s d i d not a l l o w s e e i n g a change o r t h e c o p i n g p r o c e s s i n t h e sample. 2. A nonrandom sample i n t r o d u c e d s o u r c e s o f b i a s . S u b j e c t s were r e c r u i t e d from o n l y one p o s t - r e n a l t r a n s p l a n t program w h i c h had i t s own p r o t o c o l s , c h a r a c t e r i s t i c s , and drug regimens. T h e r e f o r e , t h e c o n v e n i e n c e sample used may not have been r e p r e s e n t a t i v e o f t h e p o p u l a t i o n o f l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s . 3. Because r e a d i n g and comprehension o f E n g l i s h was n e c e s s a r y , s u b j e c t s from o t h e r c u l t u r e s not f l u e n t I n E n g l i s h may have been m i s r e p r e s e n t e d . T h e r e f o r e , t h i s c r i t e r i o n o f E n g l i s h l i t e r a c y d i d not a l l o w a c l e a r p i c t u r e o f t h e c u l t u r a l d i m e n s i o n o f t h e sample. 4. The s t u d y d i d not c o n t r o l f o r f a c t o r s such as o t h e r d i s e a s e s t h a t may r e s u l t from o r be a s s o c i a t e d w i t h ESRD, and t h e t r a n s p l a n t p r o c e s s w h i c h may confound s u b j e c t s ' p e r c e p t i o n s o f u n c e r t a i n t y and c o p i n g s t r a t e g i e s . 5. The f o c u s of t h i s s t u d y was t h e a d u l t w i t h a l o n g -term k i d n e y t r a n s p l a n t and as suc h , t h e f i n d i n g s a r e not g e n e r a l i z a b l e t o c h i l d r e n o r a d o l e s c e n t s . 59 E t h i c a l C o n s i d e r a t i o n s P e r m i s s i o n t o conduct t h i s s t u d y was o b t a i n e d from The U n i v e r s i t y o f B r i t i s h Columbia B e h a v i o u r a l S c i e n c e s S c r e e n i n g Committee f o r Res e a r c h and Other S t u d i e s I n v o l v i n g Human S u b j e c t s . As w e l l , p e r m i s s i o n t o implement t h e s t u d y was o b t a i n e d from t h e N u r s i n g and H o s p i t a l R e s e a r c h Committees. N u r s i n g s t a f f from t h e H o s p i t a l ' s P o s t - R e n a l T r a n s p l a n t C l i n i c a s s i s t e d i n t h e s e l e c t i o n o f p o t e n t i a l s u b j e c t s a c c o r d i n g t o t h e sample c r i t e r i a . Each o f t h e nurses r e c e i v e d a copy o f t h e p r o p o s a l f o r t h e i r r e v i e w . A l l o f t h e p o t e n t i a l p a r t i c i p a n t s r e c e i v e d an i n t r o d u c t o r y l e t t e r o u t l i n i n g t h e purpose o f t h e s t u d y and t h e n a t u r e and e x t e n t o f t h e i r i n v o l v e m e n t . A l l p o t e n t i a l p a r t i c i p a n t s were i n f o r m e d i n w r i t i n g t h a t t h e y were not o b l i g a t e d t o p a r t i c i p a t e i n t h e s t u d y and c o u l d r e f u s e t o answer any q u e s t i o n s w i t h o u t any e f f e c t t o t h e i r f u t u r e n u r s i n g o r m e d i c a l c a r e . Anonymity and c o n f i d e n t i a l i t y were m a i n t a i n e d t h r o u g h o u t t h i s s t u d y . The names o f t h e p a r t i c i p a n t s d i d not appear on t h e q u e s t i o n n a i r e s . Each p a r t i c i p a n t was a s s i g n e d a code number. A l i s t o f t h e p a r t i c i p a n t s ' names and code numbers were k e p t by t h e c l i n i c n u r s i n g s t a f f and t h e r e s e a r c h e r d i d not have a c c e s s t o t h i s l i s t . Requests f o r s t u d y r e s u l t s were ke p t s e p a r a t e from t h e d a t a and a c c e s s i b l e o n l y t o t h e r e s e a r c h e r . Any i n f o r m a t i o n t h a t might i d e n t i f y t h e p a r t i c i p a n t s was not used o r r e v e a l e d anywhere. 60 Data A n a l y s i s Raw d a t a c o l l e c t e d from t h e q u e s t i o n n a i r e s were coded and e n t e r e d i n t o a computer f i l e . A l l d a t a e n t r y was v e r i f i e d by a c o l l e a g u e . Data were a n a l y z e d u s i n g t h e S t a t i s t i c a l Package f o r t h e S o c i a l S c i e n c e s (SPSS:X) ( L a i , 1990). The d a t a f i l e l a c k e d complete i n f o r m a t i o n i n some c a s e s f o r some v a r i a b l e s . F o r example, some re s p o n d e n t s r e f u s e d t o answer t h e q u e s t i o n , o t h e r s i n d i c a t e d t h e y d i d not know, and some r e s p o n d e n t s s i m p l y n e g l e c t e d t o f i l l i n an answer. A l l o f t h e s e r e s p o n s e s were d e c l a r e d as m i s s i n g d a t a and m i s s i n g - v a l u e l a b e l s were s p e c i f i e d i n t h e computer program. Data were t h e r e f o r e a n a l y z e d i n c l u d i n g u s e r - d e f i n e d m i s s i n g v a l u e s . I n t h i s s t u d y , f i n d i n g s a r e r e p o r t e d f o r a l l 88 cases where p o s s i b l e and i n cas e s o f m i s s i n g d a t a , t h e sample s i z e on w h i c h t h e a n a l y s i s was based i s r e p o r t e d . D e s c r i p t i v e s t a t i s t i c s were used f o r d e s c r i b i n g t h e demographic, h e a l t h , and s u r g i c a l c h a r a c t e r i s t i c s o f t h e sample, and as a means f o r p r e s e n t i n g t h e v a r i a b i l i t y i n s c a l e r e s p o n s e s . R e s e a r c h q u e s t i o n s one and two were answered u s i n g d e s c r i p t i v e s t a t i s t i c s . The t h i r d r e s e a r c h q u e s t i o n was answered u s i n g t h e Pear s o n ' s P r o d u c t Moment C o r r e l a t i o n t o d e s c r i b e and t e s t t h e r e l a t i o n s h i p between u n c e r t a i n t y and c o p i n g s t r a t e g i e s . A two t a i l e d t e s t o f s i g n i f i c a n c e was used because t h e d i r e c t i o n o f t h e r e l a t i o n s h i p c o u l d not be de t e r m i n e d i n advance ( H o w e l l , 1987). P a r a m e t r i c s t a t i s t i c s were used because t h e y a r e more p o w e r f u l and o f f e r more f l e x i b i l i t y t h a n n o n p a r a m e t r i c t e s t s ( P o l i t & H u n g l e r , 1983). G i v e n an adequate sample s i z e , p a r a m e t r i c 61 s t a t i s t i c s y i e l d s t r o n g e r r e s u l t s even when t h e a s s u m p t i o n o f n o r m a l i t y i s v i o l a t e d ( G l a s s & Ho p k i n s , 1984). I n a d d i t i o n , s i n c e a L i k e r t r e s ponse s c a l e i s assumed t o r e p r e s e n t an e q u a l i n t e r v a l continuum, and t h e sum of res p o n s e s i s c o n s i d e r e d i n t e r v a l d a t a ( N u n n a l l y , 1967; S h e l l e y , 1984), p a r a m e t r i c s t a t i s t i c s were c o n s i d e r e d a p p r o p r i a t e . The l e v e l o f s i g n i f i c a n c e e s t a b l i s h e d f o r t h i s s t u d y was s e t a t .05. Summary In t h i s c h a p t e r t h e methods used t o e x p l o r e t h e l e v e l o f u n c e r t a i n t y and use of c o p i n g s t r a t e g i e s were o u t l i n e d . The s t u d y was d e s c r i p t i v e and c o r r e l a t i o n a l i n d e s i g n . The sample c o n s i s t e d o f s u b j e c t s who were r e c r u i t e d t h r o u g h one h o s p i t a l based f o l l o w - u p c l i n i c and met t h e i n c l u s i o n c r i t e r i a . The p e r c e p t i o n s o f u n c e r t a i n t y and use o f c o p i n g s t r a t e g i e s were measured a t o n l y one p o i n t i n t i m e . The i n s t r u m e n t s used t o c o l l e c t d a t a i n c l u d e d t h e U n c e r t a i n t y S t r e s s S c a l e , t h e r e v i s e d J a l o w i e c C o p i n g S c a l e , and a p a t i e n t i n f o r m a t i o n s h e e t . The n u r s i n g s t a f f a t t h e c l i n i c i d e n t i f i e d s u i t a b l e p a t i e n t s as s t u d y p a r t i c i p a n t s and m a i l e d out q u e s t i o n n a i r e packages t o t h e a c c e s s i b l e p o p u l a t i o n . D e s c r i p t i v e s t a t i s t i c s and t h e P e a r s o n r were used t o a n a l y z e t h e t h r e e major r e s e a r c h q u e s t i o n s . The H o s p i t a l and The U n i v e r s i t y E t h i c s Committees g r a n t e d t h e i r a p p r o v a l t o conduct t h e s t u d y . C o n f i d e n t i a l i t y o f r e s p o n s e s were m a i n t a i n e d i n t h a t q u e s t i o n n a i r e s c o n t a i n e d no men t i o n o f s u b j e c t name, and d a t a were r e p o r t e d c o l l e c t i v e l y . I n t h e c h a p t e r t o f o l l o w , t h e demographic c h a r a c t e r i s t i c s o f t h e s t u d y sample and t h e f i n d i n g s r e l a t e d t o each o f t h e t h r e e r e s e a r c h q u e s t i o n s a r e p r e s e n t e d and d i s c u s s e d . CHAPTER FOUR P r e s e n t a t i o n and D i s c u s s i o n o f F i n d i n g s I n t r o d u c t i o n The p r e s e n t a t i o n o f Ch a p t e r Four i s a r r a n g e d under t h r e e s e c t i o n s . I n t h e f i r s t s e c t i o n , a d e s c r i p t i o n o f t h e demographic, h e a l t h and s u r g i c a l c h a r a c t e r i s t i c s o f t h e sample i s r e p o r t e d . Next, t h e f i n d i n g s r e l a t e d t o each o f t h e t h r e e r e s e a r c h q u e s t i o n s a r e p r e s e n t e d . F i n a l l y , a d i s c u s s i o n o f t h e s t u d y sample and f i n d i n g s i s p r o v i d e d i n s e c t i o n t h r e e . C h a r a c t e r i s t i c s o f t h e Sample The sample c o n s i s t e d of 88 a d u l t k i d n e y p a t i e n t s who were t r a n s p l a n t e d t h r e e and more y e a r s p r i o r t o t h e s t u d y . A t o t a l o f 150 p a t i e n t s were m a i l e d t h e q u e s t i o n n a i r e and a f t e r one r e m i n d e r l e t t e r , t h e re s p o n s e r a t e was 59%. None o f t h e q u e s t i o n n a i r e s were r e t u r n e d as u n d e l i v e r a b l e . Of t h e 88 q u e s t i o n n a i r e s r e t u r n e d , f i v e were a p p r o x i m a t e l y o n e - q u a r t e r i n c o m p l e t e , and one was a p p r o x i m a t e l y h a l f i n c o m p l e t e . Of t h e 62 p a t i e n t s who d i d not r e s p o n d , t h e c l i n i c n u r s e s i n f o r m e d t h e r e s e a r c h e r t h a t two had been d i a g n o s e d w i t h c a n c e r , one had undergone major c a r d i o -v a s c u l a r s u r g e r y , and one had a f a i l i n g g r a f t . Demographic C h a r a c t e r i s t i c s of t h e Sample Demographic d a t a c o l l e c t e d from t h e p a t i e n t s were age, s e x , m a r i t a l s t a t u s , employment s t a t u s , o c c u p a t i o n , and e d u c a t i o n a l l e v e l . Age o f t h e s u b j e c t s a t t h e t i m e of t h e s t u d y ranged from 27 t o 68 y e a r s (M = 43.7, SD = 10.7) (see T a b l e I ) . Of t h e 88 p a t i e n t s i n t h e sample, 58 were male (65.9%) and 30 were female ( 3 4 . 1 % ) . The m a r i t a l s t a t u s of t h e s u b j e c t s was as f o l l o w s : 22 64 were s i n g l e ( 2 5 . 0 % ) , 54 were m a r r i e d ( 6 1 . 4 % ) , 6 were d i v o r c e d ( 6 . 8 % ) , 3 were s e p a r a t e d ( 3 . 4 % ) , and 3 were widowed ( 3 . 4 % ) . T a b l e I Age D i s t r i b u t i o n o f t h e Sample a t t h e Time of Study Age Frequency P e r c e n t 27 - 32 13 14.8 33 - 38 21 23.9 39 - 44 16 18.2 45 - 50 16 18.2 51 - 56 8 9.1 57 - 62 7 7.9 63 - 68 7 7.9 T o t a l 88 100.0 Employment c h a r a c t e r i s t i c s r e v e a l e d t h a t t h e m a j o r i t y o r 53 s u b j e c t s (60.2%) were employed. Of t h e r e m a i n i n g 35 s u b j e c t s , 14 were unemployed (15.9%) and 10 were r e t i r e d ( 1 1 . 4 % ) . Ten s u b j e c t s were on d i s a b i l i t y p e n s i o n ( 1 1 . 4 % ) , and one s u b j e c t was r e c e i v i n g s o c i a l a s s i s t a n c e ( 1 . 1 % ) . S u b j e c t s ' o c c u p a t i o n s were c a t e g o r i z e d by t h e r e s e a r c h e r (see T a b l e I I ) . The m a j o r i t y o f s u b j e c t s were e i t h e r i n t h e p r o f e s s i o n a l o r l a b o u r e r / t e c h n i c i a n c a t e g o r y . There were 8 s u b j e c t s who d i d not i n d i c a t e t h e i r o c c u p a t i o n . The e d u c a t i o n a l l e v e l of t h e sample i s p r e s e n t e d i n T a b l e I I I . One t h i r d o f t h e s u b j e c t s had a t t a i n e d an e d u c a t i o n a l l e v e l o f grade 12 and a l m o s t h a l f of t h e s u b j e c t s had a t t a i n e d an e d u c a t i o n a t t h e u n i v e r s i t y / c o l l e g e l e v e l . 65 T a b l e I I O c c u p a t i o n s o f Long-Term K i d n e y T r a n s p l a n t P a t i e n t s O c c u p a t i o n a l C a t e g o r y Frequency P e r c e n t P r o f e s s i o n a l 18 20, .5 A d m i n i s t r a t i v e / M a n a g e r 12 13, .6 S a l e s 7 7 , .9 S e c r e t a r y / O f f i c e Worker 9 10, .2 T e c h n i c i a n / L a b o u r e r 19 21, .6 Homemaker/Housewi f e 5 5, .7 R e t i r e d 10 11. .4 No Answer 8 9 . 1 T o t a l 88 100. ,0 T a b l e I I I E d u c a t i o n L e v e l of t h e Sample E d u c a t i o n L e v e l Frequency P e r c e n t Up t o Grade 8 Up t o Grade 10 Grade 11 Grade 12 U n i v e r s i t y / C o l l e g e 2 12 6 29 39 2.3 13.6 6.8 33.0 44.3 T o t a l 88 100.0 H e a l t h C h a r a c t e r i s t i c s of t h e Sample The h e a l t h i n f o r m a t i o n c o l l e c t e d from t h e p a t i e n t s c o n c e r n e d m e d i c a l / h e a l t h problems e x p e r i e n c e d a s i d e from t h e i r k i d n e y d i s e a s e . The number of m e d i c a l o r h e a l t h problems r e p o r t e d by l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s ranged from none t o e i g h t (M = 2.1). F o r t y - s i x o f t h e p a t i e n t s (52.3%) r e p o r t e d h a v i n g no o t h e r h e a l t h problems whereas 42 p a t i e n t s (47.7%) r e p o r t e d h a v i n g o t h e r m e d i c a l o r h e a l t h problems. E i g h t e e n p a t i e n t s (42.9%) 66 r e p o r t e d one h e a l t h problem, 20 p a t i e n t s (47.6%) r e p o r t e d two t o f o u r h e a l t h p roblems, and f o u r p a t i e n t s (9.5%) r e p o r t e d f i v e o r more h e a l t h problems. S u b j e c t s ' h e a l t h problems were c a t e g o r i z e d by t h e r e s e a r c h e r . J o i n t - r e l a t e d problems and c a r d i o v a s c u l a r d i s e a s e s were t h e most f r e q u e n t l y r e p o r t e d m e d i c a l / h e a l t h problems (see T a b l e I V ) . T a b l e IV H e a l t h / M e d i c a l Problems R e p o r t e d Problem Frequency P e r c e n t o f Responses J o i n t - r e l a t e d 20 21 .9 C a r d i o v a s c u l a r [ h i g h b l o o d p r e s s u r e (15) e l e v a t e d c h o l e s t e r o l ( 3 ) ] 18 19 .8 C a t a r a c t s 7 7 .7 D i a b e t e s 7 7 .7 M u s c l e Cramps 6 6 .6 N e u r o l o g i c a l [headaches ( 5 ) , e p i l e p s y ( 1 ) ] 6 6 .6 R e s p i r a t o r y [asthma ( 2 ) , s i n u s i t i s ( 2 ) ] 4 4 .4 S k i n [ w a r t s ( 3 ) , p s o r i a s i s ( 1 ) ] 4 4 .4 Cancer [ s k i n ( 2 ) , p r o s t a t e ( 1 ) ] 3 3 .3 G a s t r o i n t e s t i n a l [ u l c e r ( 2 ) , h i a t u s h e r n i a ( 1 ) ] 3 3 .3 L o s s o f energy 3 3 .3 T i n n i t u s 3 3 .3 D e p r e s s i o n 2 2 .2 P o l i o 2 2 .2 C e r e b r a l P a l s y 1 1 . 1 I n f e r t i l i t y 1 1 . 1 O b e s i t y 1 1 . 1 T o t a l Responses 91 100 .0 K i d n e y T r a n s p l a n t H i s t o r y K i d n e y t r a n s p l a n t h i s t o r y i n f o r m a t i o n c o l l e c t e d from t h e p a t i e n t s was p r e - t r a n s p l a n t t r e a t m e n t , donor t y p e , age a t t i m e o f t r a n s p l a n t , number o f y e a r s t r a n s p l a n t e d , number o f k i d n e y t r a n s p l a n t s , and rea s o n s f o r r e - t r a n s p l a n t a t i o n . The m a j o r i t y o r 87 s u b j e c t s (98.9%) were on d i a l y s i s p r i o r t o t h e i r k i d n e y t r a n s p l a n t . Only one s u b j e c t went d i r e c t l y t o t r a n s p l a n t a t i o n . In t h i s sample, 81 s u b j e c t s (92%) r e c e i v e d a k i d n e y from a c a d a v e r i c donor. The r e m a i n i n g seven s u b j e c t s r e c e i v e d a k i d n e y from a l i v i n g - r e l a t e d donor. Age a t t i m e of k i d n e y t r a n s p l a n t was c a l c u l a t e d by s u b t r a c t i n g t h e s u b j e c t ' s b i r t h d a t e from t r a n s p l a n t d a t e . Age a t t i m e of t r a n s p l a n t f o r t h e sample ranged from 21 t o 60 y e a r s (M = 35.3, SD = 9.7) (see T a b l e V) w i t h t h e m a j o r i t y o f s u b j e c t s b e i n g between 25 and 34 y e a r s o f age. Time s i n c e t r a n s p l a n t was r e p o r t e d as t h e number of y e a r s s u b j e c t s had l i v e d w i t h t h e i r c u r r e n t k i d n e y t r a n s p l a n t . The mean was 8.5 y e a r s s i n c e t r a n s p l a n t w i t h a range from 3.1 y e a r s t o 20.9 y e a r s . The s t a n d a r d d e v i a t i o n was 4.8 y e a r s . T a b l e V Age a t Time of K i d n e y T r a n s p l a n t Age a t Time of T r a n s p l a n t Frequency P e r c e n t ( y e a r s ) 2 1 - 2 4 9 10.2 25 - 34 41 46.6 35 - 44 21 23.9 45 - 54 15 17.0 5 5 - 6 4 2 2.3 T o t a l 88" 100.0 F o r t h e m a j o r i t y o r 76 s u b j e c t s ( 8 6 . 4 % ) , t h i s had been t h e i r f i r s t k i d n e y t r a n s p l a n t . Twelve s u b j e c t s had r e c e i v e d more t h a n one t r a n s p l a n t : 11 s u b j e c t s had r e q u i r e d a second t r a n s p l a n t and one s u b j e c t had r e q u i r e d a t h i r d . F o r t h o s e p a t i e n t s who had 68 r e q u i r e d more t h a n one t r a n s p l a n t p r o c e d u r e (n = 1 2 ) , r e a s o n s f o r r e - t r a n s p l a n t a t i o n a r e p r e s e n t e d i n T a b l e V I . C h r o n i c r e j e c t i o n was r e p o r t e d as t h e most f r e q u e n t r e a s o n f o r u n d e r g o i n g a n o t h e r k i d n e y t r a n s p l a n t . T a b l e VI Reason F o r R e - t r a n s p l a n t a t i o n Reason Frequency P e r c e n t C h r o n i c R e j e c t i o n 8 66.7 H i g h B l o o d P r e s s u r e 1 8.3 I n f e c t i o n 1 8.3 A c u t e R e j e c t i o n 2 16.7 T o t a l 12 100.0 F i n d i n g s I n t h e s e c t i o n t o f o l l o w , t h e f i n d i n g s o f t h i s r e s e a r c h w i l l be p r e s e n t e d i n r e l a t i o n t o each of t h e t h r e e r e s e a r c h q u e s t i o n s . The l e v e l and n a t u r e of u n c e r t a i n t y and degree and use o f c o p i n g s t r a t e g i e s were examined u s i n g d e s c r i p t i v e s t a t i s t i c s . The P e a r s o n P r o d u c t Moment C o r r e l a t i o n C o e f f i c i e n t was used t o examine t h e r e l a t i o n s h i p between u n c e r t a i n t y and c o p i n g s t r a t e g i e s . F o l l o w i n g t h e p r e s e n t a t i o n o f f i n d i n g s r e l a t e d t o t h e r e s e a r c h q u e s t i o n s , a n c i l l a r y f i n d i n g s w i l l be r e p o r t e d . R e s e a r c h Q u e s t i o n 1: R e g a r d i n g l e v e l and n a t u r e o f u n c e r t a i n t y To a d d r e s s t h e l e v e l and n a t u r e of u n c e r t a i n t y , t h e r e s u l t s o b t a i n e d on t h e u n c e r t a i n t y s c a l e (USS) w i l l be p r e s e n t e d u s i n g d e s c r i p t i v e s t a t i s t i c s . The f r e q u e n c y and d i s t r i b u t i o n o f s c o r e s and t h e means of items f o r each of t h e f a c t o r s on t h e u n c e r t a i n t y s c a l e w i l l a l s o be p r e s e n t e d t o show wh i c h f a c t o r s r e f l e c t e d t h e 69 h i g h e s t u n c e r t a i n t y . The t o t a l s c o r e on t h e u n c e r t a i n t y s c a l e (USS) ranged from a low o f 60 t o a h i g h of 220 (M = 103.3, SD = 38.7) (see T a b l e V I I ) . F i f t y - o n e s u b j e c t s (58%) s c o r e d below t h e mean whereas 12 s u b j e c t s (13.6%) s c o r e d above 150. A l t h o u g h t h e m a j o r i t y o f t h e sample had low l e v e l s , some s u b j e c t s d i d have moderate t o h i g h l e v e l s o f u n c e r t a i n t y . T a b l e V I I T o t a l U n c e r t a i n t y f o r Long-Term K i d n e y T r a n s p l a n t P a t i e n t s T o t a l S c o r e Frequency P e r c e n t 60 - 74 (low u n c e r t a i n t y ) 22 25.0 75 - 89 17 19.3 90 - 104 12 13.7 105 - 119 17 19.3 120 - 134 6 6.6 135 - 149 2 2.3 150 - 164 3 3.4 165 - 179 3 3.4 180 - 194 2 2.3 195 - 209 1 1.1 210 - 224 ( h i g h u n c e r t a i n t y ) 3 3.4 T o t a l 88 100.0 Note. 60 i t e m s s c o r e d from 1 t o 5. Minimum s c o r e p o s s i b l e i s 60 and maximum s c o r e p o s s i b l e i s 300. O v e r a l l l e v e l o f u n c e r t a i n t y u s i n g t h e v i s u a l a nalogue s c a l e was examined. O v e r a l l u n c e r t a i n t y ranged from 0 t o 90. The mean u n c e r t a i n t y l e v e l was 25.6 (SD = 23.5) (see T a b l e V I I I ) . The m a j o r i t y o f t h e sample o r 69.3% (n = 61) had o v e r a l l low l e v e l s o f u n c e r t a i n t y w i t h s c o r e s below 35. A l t h o u g h t h e m a j o r i t y had low l e v e l s o f u n c e r t a i n t y , 8% o f s u b j e c t s (n = 7) d i d have h i g h l e v e l s o f u n c e r t a i n t y w i t h s c o r e s above 65. 70 T a b l e V I I I O v e r a l l U n c e r t a i n t y L e v e l : V i s u a l Analogue T o t a l S core Frequency P e r c e n t 0 - 10 (no u n c e r t a i n t y ) 32 36 .4 11 - 20 12 13.6 21 - 30 14 16.0 31 - 40 7 7.9 41 - 50 10 11.4 51 - 60 3 3.4 61 - 70 7 7.9 71 - 80 1 1.1 81 - 90 ( v e r y h i g h u n c e r t a i n t y ) 2 2.3 T o t a l 88 100.0 Note. 100 mm v i s u a l analogue. Minimum s c o r e p o s s i b l e i s 0 and maximum s c o r e p o s s i b l e i s 100. There a r e f i v e s u b s c a l e s o f t h e u n c e r t a i n t y s c a l e . Means f o r each s u b s c a l e and i t e m means a r e p r e s e n t e d i n T a b l e IX t o p e r m i t c o m p a r i s o n and i d e n t i f i c a t i o n of a r e a s o f h i g h e r u n c e r t a i n t y . The f a c t o r s o f i n d e t e r m i n a t e n e s s , i n d e f i n i t e n e s s and p r o b a b i l i t y r e f l e c t e d t h e h i g h e s t u n c e r t a i n t y . T a b l e IX USS Item and F a c t o r Means and S t a n d a r d D e v i a t i o n s F a c t o r Items i n F a c t o r SD Item t h e F a c t o r Mean Mean I I n d e f i n i t e n e s s 20 36.90 14 .47 1.85 I I R e l i a b i l i t y / D e p e n d a b i l i t y 17 25 .24 10 .05 1.48 I I I P r o b a b i l i t y 8 14.73 6 .29 1.84 IV D o u b t f u l 7 11.26 4 .81 1.61 V I n d e t e r m i n a t e n e s s 8 15. 17 6 .70 1.90 T o t a l S c a l e 60 103.30 42 .32 8.68 71 R e s e a r c h Q u e s t i o n 2: R e g a r d i n g type, and f r e q u e n c y o f use o f  c o p i n g s t r a t e g i e s To a d d r e s s t h e t y p e and f r e q u e n c y o f c o p i n g s t r a t e g i e s used, d a t a from t h e c o p i n g s c a l e (JCS) w i l l be p r e s e n t e d u s i n g d e s c r i p t i v e s t a t i s t i c s . The f r e q u e n c y and d i s t r i b u t i o n o f s c o r e s and t h e means of items f o r each o f t h e c o p i n g s t y l e s on t h e c o p i n g s c a l e w i l l a l s o be p r e s e n t e d t o show w h i c h s t y l e s r e f l e c t e d t h e h i g h e s t degree o f use and e f f e c t i v e n e s s . S u b j e c t s were asked t o r a t e how f r e q u e n t l y t h e y used each o f t h e 60 s t r a t e g i e s . The number of c o p i n g s t r a t e g i e s ranged from 0 t o 60 (M = 45.9, SD = 12.0). F i f t y - o n e s u b j e c t s (57.9%) r e p o r t e d u s i n g more t h a n 47 o f t h e 60 s t r a t e g i e s (see T a b l e X ) . Rank o r d e r i n g o f t h e 60 s t r a t e g i e s i s l o c a t e d i n Appendix I t o i n d i c a t e t h e most-used and l e a s t - u s e d c o p i n g s t r a t e g i e s . T a b l e X Number of Co p i n g S t r a t e g i e s Used Number of Co p i n g Frequency P e r c e n t S t r a t e g i e s 0 -- 7 2 2.3 8 -- 15 0 0.0 16 -- 23 3 3.4 24 -- 31 4 4.6 32 -- 39 9 10.2 40 -- 47 19 21.6 48 -- 55 39 44 .3 56 -- 63 12 13.6 T o t a l 88 100.0 72 There a r e e i g h t s u b s c a l e s on t h e c o p i n g s c a l e w h i c h a s s e s s use and e f f e c t i v e n e s s of c o p i n g s t y l e s . Frequency o f use f o r each c o p i n g s t y l e was examined (see T a b l e X I ) . These d a t a i n d i c a t e t h a t t h e c o p i n g s t y l e s were used w i t h t h e f o l l o w i n g f r e q u e n c y : c o n f r o n t i v e (M = 19.2); e v a s i v e (M = 16.2); o p t i m i s t i c (M = 2 0 . 3 ) ; f a t a l i s t i c (M = 4.9); emotive (M = 5.9); p a l l i a t i v e (M = 10.8); s u p p o r t a n t (M = 7.4); s e l f - r e l i a n t (M = 13.7). F o r each c o p i n g s t r a t e g y t h e s u b j e c t s had used, t h e y were asked t o a s s e s s t h e e f f e c t i v e n e s s of t h e s t r a t e g y . E f f e c t i v e n e s s was d e f i n e d as t h e degree t o w h i c h t h e s t r a t e g y had h e l p e d t h e p e r s o n t o cope w i t h t h e s i t u a t i o n . Rank o r d e r i n g o f t h e 60 s t r a t e g i e s i s l o c a t e d i n Appendix J t o i n d i c a t e t h e most e f f e c t i v e and l e a s t - e f f e c t i v e c o p i n g s t r a t e g i e s . F requency o f e f f e c t i v e n e s s f o r each c o p i n g s t y l e was examined (see T a b l e X I ) . These d a t a show t h a t t h e c o p i n g s t y l e s were used w i t h t h e f o l l o w i n g f r e q u e n c y : c o n f r o n t i v e (M = 16.7); e v a s i v e (M = 10.4); o p t i m i s t i c (M = 17.8); f a t a l i s t i c (M = 3.8); emotive (M = 2.9); p a l l i a t i v e (M = 9.5); s u p p o r t a n t (M = 7.4); s e l f - r e l i a n t (M = 10.9). Means f o r each s u b s c a l e and i t e m means a r e p r e s e n t e d i n T a b l e X I I t o p e r m i t comparison and i d e n t i f i c a t i o n o f c o p i n g s t y l e use and e f f e c t i v e n e s s . O p t i m i s t i c , s e l f - r e l i a n t , and c o n f r o n t i v e s t y l e s were used more o f t e n ; f a t a l i s t i c and emotive s t y l e s were used l e a s t . O p t i m i s t i c , c o n f r o n t i v e , and s e l f - r e l i a n t c o p i n g s t y l e s were t h e most e f f e c t i v e whereas e v a s i v e and em o t i v e s t y l e s were t h e l e a s t . 73 T a b l e XI C o p i n g S t y l e Use and E f f e c t i v e n e s s T o t a l S c o re Use E f f e c t i v e n e s s Frequency P e r c e n t Frequency P e r c e n t C o n f r o n t i v e C oping S t y l e ( a ) 0 -- 6 4 3.5 4 4.7 7 -- 13 10 11.5 19 22.4 14 -- 20 36 41.4 38 44.7 21 -- 27 31 35.6 21 24.7 28 -- 34 7 8.0 3 3.5 E v a s i v e Coping S t y l e ( b ) 0 -- 6 11 12.6 22 26.2 7 -- 13 15 17 .2 38 45.2 14 -- 20 38 43.7 22 26.2 21 -- 27 20 23.0 2 2.4 28 -- 34 3 3.5 0 0.0 O p t i m i s t i c Coping S t y l e ( c ) o -- 6 1 1.1 2 2.3 7 -- 13 3 3.5 14 16.5 14 -- 20 34 39 .1 38 44.7 21 -- 27 49 56.3 31 36.5 F a t a l i s t i c C o ping S t v l e ( d ) 0 -- 2 12 13.8 25 30.9 3 -- 5 39 44.8 39 48.1 6 -- 8 32 36.8 15 18.5 9 -- 11 4 4.6 2 2.5 Emotive Coping S t y l e ' 8 ' 0 -- 3 19 21.6 51 62.2 4 -- 7 40 45.5 29 35.4 8 -- 11 26 29.5 2 2.4 12 -- 15 3 3.4 0 0.0 74 T a b l e XI ( c o n t i n u e d ) T o t a l S c o r e Use E f f e c t i v e n e s s Frequency P e r c e n t Frequency P e r c e n t P a l l i a t i v e C o p inq S t v l e ( t ) 0 - 3 2 2.3 1 1.2 4 - 7 13 15.0 20 23.5 8 - 11 33 37.9 48 56.5 12 - 15 33 37.9 13 15.3 16 - 19 6 6.9 3 3.5 Su p p o r t a n t Copinq S t v l e ( 9 ) 0 - 3 14 16.1 16 19.3 4 - 7 27 31.0 20 24 .1 8 - 11 36 41.4 35 42.2 12 - 15 10 11.5 12 14.4 S e l f - R e l i a n t Copinq S t v l e ( h ) o - 3 2 2.3 5 5.9 4 - 7 2 2.3 12 14. 1 8 - 11 18 20.7 29 34.1 12 - 15 36 41.1 26 30.6 16 - 19 25 28.7 11 12.9 20 - 23 4 4.6 2 2.3 Note. N„ Sample s i z e on whi c h c o p i n g s t y l e use was based —E Sample s i z e on whi c h c o p i n g s t y l e e f f e c t i v e n e s s was based Note. a Maximum s c o r e p o s s i b l e = 30 ( 10 items X 3, N„= 87, N E=85) b Maximum s c o r e p o s s i b l e = 39 ( 13 it e m s X 3 N„= 87, N E=84) c Maximum s c o r e p o s s i b l e = 27 ( 9 items X 3 87, N E=85) d Maximum s c o r e p o s s i b l e = 12 ( 4 ite m s X 3 N„= 87, NE=81) e Maximum s c o r e p o s s i b l e = 15 ( 5 items X 3 88, N E=82) f Maximum s c o r e p o s s i b l e = 21 ( 7 items X 3 87, N E=85) g Maximum s c o r e p o s s i b l e = 15 ( 5 ite m s X 3 87, N E=83) h Maximum s c o r e p o s s i b l e = 21 ( 7 items X 3 87, N E=85) 75 T a b l e X I I C o p i n g S t y l e Use and E f f e c t i v e n e s s S u b s c a l e and Item Means Co p i n g Number Use E f f e c t i v e n e s s S t y l e o f Items S c a l e Mean SD Item Mean S c a l e Mean SD Item Mean C o n f r o n t i v e (10) 19.20 5.87 1.92 16.74 6 .04 1.67 E v a s i v e (13) 16.24 6.85 1.25 10.41 5.14 0.80 O p t i m i s t i c (9) 20.26 4.27 2.25 17.80 5.31 1.98 F a t a l i s t i c (4) 4.87 2.29 1.22 3.81 2.30 0.95 Emotive (5) 5.93 3.10 1.19 2.94 2.03 0.59 P a l l i a t i v e (7) 10.76 3.51 1.54 9.45 3.01 1.35 S u p p o r t a n t (5) 7.39 3.40 1.48 7 .42 3.33 1.48 S e l f - R e l i a n t (7) 13.71 3.93 1.96 10.95 4.28 1.56 T o t a l (60) 98.36 33.22 12.81 79.52 31.44 10.38 F o l l o w i n g t h e 60 items on t h e q u e s t i o n n a i r e , t h r e e open ended q u e s t i o n s were asked t o s o l i c i t a d d i t i o n a l ways o f c o p i n g i n a l o n g - t e r m k i d n e y t r a n s p l a n t s i t u a t i o n . Responses were c o n t e n t a n a l y z e d by t h e r e s e a r c h e r . There were 27 s u b j e c t s (30.7%) who made q u a l i t a t i v e a d d i t i o n s t o t h e i n s t r u m e n t and t h e i r r e s p o n s e s ranged i n number from 1 t o 6 w i t h a mean o f 2.1. I n t o t a l , t h e r e were 25 a d d i t i o n a l ways r e p o r t e d : 19 were mentioned once, f i v e were mentioned t w i c e , and one was mentioned f o u r t i m e s . S u b j e c t s were a l s o asked t o q u a n t i f y t h e i r r e s p o n s e s . That i s , s u b j e c t s r a t e d t h e i r a d d i t i o n a l ways i n terms o f how o f t e n t h e i d e n t i f i e d b e h a v i o u r s were used and how h e l p f u l each has been u s i n g a 3 - p o i n t s c a l e . S u b j e c t s ' a d d i t i o n a l ways o f c o p i n g a r e l o c a t e d i n Appendix K. Re s e a r c h Q u e s t i o n 3: R e g a r d i n g t h e r e l a t i o n s h i p between  u n c e r t a i n t y and c o p i n g s t r a t e g i e s The P e a r s o n P r o d u c t Moment C o r r e l a t i o n C o e f f i c i e n t was used t o q u a n t i f y t h e r e l a t i o n between u n c e r t a i n t y and c o p i n g s t r a t e g i e s and t h e components o f each of t h e s e s c a l e s . S i g n i f i c a n t c o r r e l a t i o n s were found among l e v e l s o f u n c e r t a i n t y and use and e f f e c t i v e n e s s of t h e e i g h t c o p i n g s t y l e s (see T a b l e X I I I ) . There were s i g n i f i c a n t p o s i t i v e c o r r e l a t i o n s between u n c e r t a i n t y and use of e v a s i v e , f a t a l i s t i c , and emotive c o p i n g . There was a l s o a s i g n i f i c a n t n e g a t i v e r e l a t i o n s h i p between c o n f r o n t i v e and o p t i m i s t i c c o p i n g e f f e c t i v e n e s s . A l t h o u g h not s t a t i s t i c a l l y s i g n i f i c a n t a t t h e .05 l e v e l , t h e f o l l o w i n g r e l a t i o n s h i p s b ear c o n s i d e r a t i o n . U n c e r t a i n t y was p o s i t i v e l y r e l a t e d t o s e l f - r e l i a n t c o p i n g use and e f f e c t i v e n e s s . S i g n i f i c a n t c o r r e l a t i o n s were found among t h e f i v e a r e a s o f u n c e r t a i n t y u s i n g t h e USS and t h e e i g h t c o p i n g s t y l e s (see T a b l e XIV) . I n d e f i n i t e n e s s was n e g a t i v e l y r e l a t e d t o c o n f r o n t i v e and o p t i m i s t i c c o p i n g e f f e c t i v e n e s s but p o s i t i v e l y r e l a t e d t o f a t a l i s t i c c o p i n g e f f e c t i v e n e s s . U n c e r t a i n t y about p r o b a b i l i t y and b e i n g d o u b t f u l were n e g a t i v e l y r e l a t e d t o c o n f r o n t i v e , o p t i m i s t i c , and s e l f - r e l i a n t c o p i n g e f f e c t i v e n e s s . I n d e t e r m i -n a t e n e s s was p o s i t i v e l y r e l a t e d t o f a t a l i s t i c c o p i n g e f f e c t i v e n e s s . A l t h o u g h not s t a t i s t i c a l l y s i g n i f i c a n t a t t h e .05 l e v e l , t h e f o l l o w i n g r e l a t i o n s h i p s b ear c o n s i d e r a t i o n . I n d e f i n i t e n e s s was p o s i t i v e l y r e l a t e d t o use o f s e l f - r e l i a n t c o p i n g and n e g a t i v e l y r e l a t e d t o c o n f r o n t i v e c o p i n g e f f e c t i v e n e s s . B e i n g d o u b t f u l was p o s i t i v e l y r e l a t e d t o use o f p a l l i a t i v e c o p i n g . I n d e t e r m i n a t e n e s s was p o s i t i v e l y r e l a t e d t o use o f o p t i m i s t i c c o p i n g . T a b l e X I I I R e l a t i o n s h i p o f U n c e r t a i n t y t o C oping S t y l e s C o p i n g S t y l e Use E f f e c t i v e n e s s C o n f r o n t i v e .03 -.21* E v a s i v e .36** . 11 O p t i m i s t i c . 16 -.21* F a t a l i s t i c #47*** . 13 E motive , 42*** .03 P a l l i a t i v e . 17 -.01 S u p p o r t a n t . 11 -.06 S e l f - R e l i a n t . 18 -.19 Note. T w o - t a i l e d , * p < .05 ** p < .01 *** p < .001 78 T a b l e XIV C o r r e l a t i o n s o f U n c e r t a i n t y F a c t o r s and C o p i n g S t y l e C o p i n g S t y l e U n c e r t a i n t y 1 * ' 1 2 3 4 5 Use C o n f r o n t i v e .05 .06 -.05 .00 .05 E v a s i v e . 34** . 37*** .31** .31** .29** O p t i m i s t i c . 17 . 16 .08 .09 .20 F a t a l i s t i c . 50*** .36** . 34** .41*** .46*** Emotive .36** .46*** .39*** .41*** . 34** P a l l i a t i v e . 16 . 19 .08 .20 . 14 S u p p o r t a n t . 16 .04 . 12 .03 . 12 S e l f - R e l i a n t .20 . 18 .08 .08 .22* E f f e c t i v e n e s s C o n f r o n t i v e -.20 . 18 -.25* -.25* -.09 E v a s i v e . 11 .07 .07 .07 . 18 O p t i m i s t i c -.24* -.19 -.22* -.24* -.05 F a t a l i s t i c .22* .00 .05 .08 .22* Emotive . 02 .04 .08 .03 .01 P a l l i a t i v e .03 .02 .03 .05 .01 S u p p o r t a n t .02 . 16 -.05 -.10 .05 S e l f - R e l i a n t -.16 . 17 -.25* -.28* .06 Note. T w o - t a i l e d , * p < .05 ** p < .01 * * * p < .001 Note. (a) U n c e r t a i n t y F a c t o r 1 = I n d e f i n i t e n e s s 2 = R e l i a b i l i t y / D e p e n d a b i l i t y 3 = P r o b a b i l i t y 4 = D o u b t f u l 5 = I n d e t e r m i n a t e n e s s A n c i l l a r y F i n d i n g s I n a d d i t i o n t o t h e t h r e e r e s e a r c h q u e s t i o n s , o t h e r a n a l y s e s were performed f o r t h e purpose of measuring s u b j e c t s ' o v e r a l l l e v e l s o f s t r e s s and t h r e a t and p e r c e p t i o n s o f t h e p o s i t i v e a s p e c t s ( o p p o r t u n i t y ) i n t h e i r u n c e r t a i n t y s t a t e . A n a l y s e s were 79 a l s o p e r f ormed f o r t h e purpose of i d e n t i f y i n g r e l a t i o n s h i p s between u n c e r t a i n t y and t h e s t r e s s o f u n c e r t a i n t y , t h r e a t , p e r c e i v e d p o s i t i v e f e e l i n g s because of u n c e r t a i n t y , and demographic v a r i a b l e s . S t r e s s o f U n c e r t a i n t y The u n c e r t a i n t y s c a l e (USS) i n c o r p o r a t e s a s e c t i o n t h a t measures t h e s t r e s s o f u n c e r t a i n t y . The f r e q u e n c y and d i s t r i b u t i o n o f s u b j e c t s ' s t r e s s of u n c e r t a i n t y s c o r e s were examined (see T a b l e XV). The t o t a l s t r e s s t h e u n c e r t a i n t y e l i c i t e d ranged from 38 t o 241 (M = 102.3, SD = 4 2.7). The m a j o r i t y o f s u b j e c t s o r 57.9% (n = 51) had o v e r a l l low l e v e l s o f s t r e s s because of u n c e r t a i n t y , w i t h s c o r e s below 103. A l t h o u g h t h e m a j o r i t y had low l e v e l s of s t r e s s , 14.8% o f s u b j e c t s (n = 13) d i d have s c o r e s above 155 w h i c h i n d i c a t e d h i g h l e v e l s o f s t r e s s because of t h e i r u n c e r t a i n t y . O v e r a l l l e v e l of s t r e s s g e n e r a t e d by u n c e r t a i n t y was examined w i t h a v i s u a l analogue s c a l e . The f r e q u e n c y and d i s t r i b u t i o n of s u b j e c t s ' o v e r a l l s t r e s s of u n c e r t a i n t y s c o r e s were examined (see T a b l e X V I ) . The s t r e s s v i s u a l a nalogue s c a l e ranged from 0 t o 94 (M = 27.7, SD = 26.5). The m a j o r i t y o r 61.4% o f s u b j e c t s (n = 54) had o v e r a l l low l e v e l s o f s t r e s s g e n e r a t e d by u n c e r t a i n t y , w i t h s c o r e s below 30. A l t h o u g h t h e m a j o r i t y had low l e v e l s , some s u b j e c t s d i d have moderate t o h i g h l e v e l s o f s t r e s s because of t h e i r u n c e r t a i n t y . 80 T a b l e XV T o t a l U n c e r t a i n t y S t r e s s S c o r e s f o r t h e Sample T o t a l S core Frequency P e r c e n t 35 - 49 (low s t r e s s ) 1 1.2 50 - 64 12 13.9 65 - 79 19 22 .1 80 - 94 16 18.6 95 - 109 10 11.6 110 - 124 8 9.3 125 - 139 6 6.9 140 - 154 1 1.2 155 - 169 5 5.8 170 - 184 2 2.3 185 - 199 3 3.5 200 - 214 1 1.2 215 - 229 1 1.2 230 - 244 ( h i g h s t r e s s ) 1 1.2 T o t a l 86 100.0 Note. 60 ite m s s c o r e d from 1 t o 5. Minimum s c o r e p o s s i b l e i s 60 and maximum s c o r e p o s s i b l e i s 300. T a b l e XVI O v e r a l l S t r e s s : V i s u a l Analogue T o t a l S c o r e Frequency P e r c e n t 0 - 9 (no s t r e s s ) 27 30.7 10 - 19 16 18.2 20 - 29 12 13.6 30 - 39 10 11.4 40 - 49 4 4.5 50 - 59 7 8.0 60 - 69 3 3.4 70 - 79 3 3.4 80 - 89 3 3.4 90 - 99 ( v e r y h i g h s t r e s s ) 3 3.4 T o t a l 88 100.0 Note. 100 mm v i s u a l analogue. Minimum s c o r e p o s s i b l e i s 0 and maximum s c o r e p o s s i b l e i s 100. 81 The r e l a t i o n s h i p between u n c e r t a i n t y and s t r e s s o f u n c e r t a i n t y was examined u s i n g t h e Pearson's P r o d u c t Moment C o r r e l a t i o n C o e f f i c i e n t . A s i g n i f i c a n t p o s i t i v e c o r r e l a t i o n was found between u n c e r t a i n t y and s t r e s s ( r =.94, p_ =.00). I n a d d i t i o n , a s i g n i f i c a n t p o s i t i v e c o r r e l a t i o n was found between u n c e r t a i n t y and t h e s t r e s s v i s u a l analogue ( r =.73, p. =.00). I n o t h e r words, t h e h i g h e r t h e u n c e r t a i n t y , t h e h i g h e r t h e s u b j e c t s ' o v e r a l l p e r c e p t i o n s of s t r e s s from t h a t u n c e r t a i n t y . U n c e r t a i n t y and T h r e a t The u n c e r t a i n t y s c a l e (USS) i n c o r p o r a t e s a s e c t i o n w h i c h a s s e s s e s t h e t h r e a t g e n e r a t e d from th e u n c e r t a i n t y u s i n g a v i s u a l a n alogue s c a l e . The f r e q u e n c y and d i s t r i b u t i o n o f s u b j e c t s ' o v e r a l l t h r e a t s c o r e s were examined (see T a b l e X V I I ) . T h r e a t ranged from 0 t o 99 (M = 24.8, SD = 26.4). The m a j o r i t y o f s u b j e c t s o r 64.8% (n = 57) had o v e r a l l low l e v e l s o f t h r e a t because of u n c e r t a i n t y , w i t h s c o r e s below 25. A l t h o u g h t h e m a j o r i t y had low l e v e l s o f t h r e a t , 8% o f s u b j e c t s (n = 7) d i d have s c o r e s above 70 w h i c h i n d i c a t e d h i g h l e v e l s o f t h r e a t because of t h e i r u n c e r t a i n t y . F i n a l l y , no s i g n i f i c a n t c o r r e l a t i o n was found between u n c e r t a i n t y and t h r e a t ( r =.05, 82 T a b l e X V I I O v e r a l l T h r e a t : V i s u a l Analogue T o t a l S c o r e Frequency P e r c e n t 0 -- 9 (no t h r e a t ) • 35 39.8 10 -- 19 18 20.4 20 -- 29 8 9.1 30 -- 39 4 4.5 40 -- 49 5 5.7 50 -- 59 6 6.8 60 -- 69 5 5.7 70 -- 79 2 2.3 80 -- 89 2 2.3 90 -- 99 ( v e r y h i g h t h r e a t ) 3 3.4 T o t a l 88 100.0 Note. 100 mm v i s u a l analogue. Minimum s c o r e p o s s i b l e i s 0 and maximum s c o r e p o s s i b l e i s 100. U n c e r t a i n t y and P o s i t i v e F e e l i n g s As w e l l , t h e u n c e r t a i n t y s c a l e (USS) has a s e c t i o n w h i c h a s s e s s e s whether t h e u n c e r t a i n t y g e n e r a t e d p o s i t i v e f e e l i n g s . The m a j o r i t y o r 61 s u b j e c t s (69.3%) had p o s i t i v e f e e l i n g s because o f t h e i r u n c e r t a i n t y , 22 s u b j e c t s (25.0%) d i d n o t , and f i v e s u b j e c t s (5.7%) f a i l e d t o respond. The f r e q u e n c y and d i s t r i b u t i o n o f s u b j e c t s ' p o s i t i v e f e e l i n g s were examined (see T a b l e X V I I I ) . P o s i t i v e f e e l i n g s ranged from 4 t o 100 (M = 64.8, SD = 24.5). The m a j o r i t y o f s u b j e c t s o r 91.8% (n = 56) had o v e r a l l moderate t o h i g h l e v e l s of p o s i t i v e f e e l i n g s , w i t h s c o r e s above 34. However, 8.2% o f s u b j e c t s (n = 5) d i d have s c o r e s between 4 and 33, i n d i c a t i n g a low l e v e l o f p o s i t i v e f e e l i n g s . F i n a l l y , no s i g n i f i c a n t c o r r e l a t i o n was found between u n c e r t a i n t y and p o s i t i v e f e e l i n g s ( r =-.17, p_ =.11). 83 T a b l e X V I I I O v e r a l l P o s i t i v e F e e l i n g s : V i s u a l Analogue T o t a l S c o re Frequency P e r c e n t 0 - 10 (no p o s i t i v e f e e l i n g s ) 3 4.9 11 - 20 0 0.0 21 - 30 1 1.6 31 - 40 3 4.9 41 - 50 13 21.3 51 - 60 7 11.5 61 - 70 8 13.1 71 - 80 7 11.5 81 - 90 7 11.5 91 - 100 ( v e r y h i g h p o s i t i v e f e e l i n g s ) 12 19.7 T o t a l 61 100.0 Note. 100 mm v i s u a l analogue. Minimum s c o r e p o s s i b l e i s 0 and maximum s c o r e p o s s i b l e i s 100. U n c e r t a i n t y and Demographic V a r i a b l e s Two s i g n i f i c a n t r e l a t i o n s h i p s were found between demographic v a r i a b l e s and u n c e r t a i n t y . There was a s i g n i f i c a n t n e g a t i v e r e l a t i o n s h i p between e d u c a t i o n and u n c e r t a i n t y ( r =-.24, p_ = .02). That i s , p a t i e n t s w i t h a l o w e r l e v e l o f e d u c a t i o n appear t o have a h i g h e r l e v e l o f u n c e r t a i n t y . I n a d d i t i o n , t h e r e was a s i g n i f i c a n t p o s i t i v e r e l a t i o n s h i p between number o f h e a l t h problems and u n c e r t a i n t y ( r =.25, p_ =. 01). That i s , p a t i e n t s who r e p o r t e d more h e a l t h problems appear t o have h i g h e r l e v e l s o f u n c e r t a i n t y . D i s c u s s i o n The f i n a l s e c t i o n o f t h i s c h a p t e r i s o r g a n i z e d i n t o t h r e e major s e c t i o n s . I n t h e f i r s t s e c t i o n , t h e s t u d y sample w i l l be d i s c u s s e d i n terms o f demographic, h e a l t h , and s u r g i c a l c h a r a c t e r i s t i c s . Next, t h e f i n d i n g s r e l a t e d t o each o f t h e 84 r e s e a r c h q u e s t i o n s w i l l be d i s c u s s e d under t h r e e h e a d i n g s : u n c e r t a i n t y , c o p i n g s t r a t e g i e s , and t h e r e l a t i o n s h i p between u n c e r t a i n t y and c o p i n g s t r a t e g i e s . I n t h e f i n a l s e c t i o n , t h e a n c i l l a r y f i n d i n g s w i l l be d i s c u s s e d i n r e l a t i o n t o t h e s u b j e c t s ' s t r e s s , t h r e a t , and p e r c e p t i o n s o f p o s i t i v e a s p e c t s ( o p p o r t u n i t y ) i n t h e i r u n c e r t a i n t y s t a t e . C h a r a c t e r i s t i c s o f t h e Sample T h i s sample r e p r e s e n t s r e a s o n a b l y w e l l t h e B r i t i s h C olumbia p o p u l a t i o n o f E n g l i s h s p e a k i n g , a d u l t , k i d n e y p a t i e n t s who r e c e i v e d e i t h e r a l i v i n g - r e l a t e d o r c a d a v e r i c donor k i d n e y t r a n s p l a n t t h r e e and more y e a r s p r i o r t o t h e s t u d y . I t a l s o r e p r e s e n t s t h i s t a r g e t p o p u l a t i o n r e a s o n a b l y w e l l because 59% o f a l l o f t h o s e e l i g i b l e p a t i e n t s i n t h e p r o v i n c e responded t o t h e q u e s t i o n n a i r e . The r e sponse r a t e f o r t h i s s t u d y r e p r e s e n t s a v e r y good r a t e c o n s i d e r i n g t h e l a c k of p e r s o n a l c o n t a c t s u b j e c t s had w i t h t h e r e s e a r c h e r . A c c o r d i n g t o Burns and Grove ( 1 9 8 7 ) , t h e r e s p o n s e r a t e f o r m a i l e d s u r v e y r e s e a r c h i s u s u a l l y 25 t o 30% and u s u a l l y , a r e sponse r a t e of 50% i s s u f f i c i e n t t o p r e v e n t r e s p o n s e b i a s . No Canadian s t a t i s t i c s were a v a i l a b l e w i t h w h i c h t o compare t h e sample i n terms of demographic d a t a such as m a r i t a l , employment, and o c c u p a t i o n a l s t a t u s . The h i g h e d u c a t i o n a l l e v e l o f t h e sample be a r s c o n s i d e r a t i o n . Over 75% of t h e sample had a t t a i n e d an e d u c a t i o n a t t h e grade 12 and u n i v e r s i t y / c o l l e g e l e v e l . A l t h o u g h t h e r e were no s t a t i s t i c s a v a i l a b l e w i t h w h i c h t o compare t h e e d u c a t i o n a l l e v e l o f t h e sample, t h e sample appeared t o be v e r y w e l l e d u c a t e d . Because t h e e d u c a t i o n a l l e v e l o f t h o s e 85 p a t i e n t s who d i d not r e t u r n t h e q u e s t i o n n a i r e i s unknown, i t i s t h e r e f o r e d i f f i c u l t t o d e t e r m i n e i f t h e s t u d y sample i s r e p r e s e n t a t i v e o f t h e t a r g e t p o p u l a t i o n i n terms o f e d u c a t i o n a l l e v e l . No s t a t i s t i c s were a v a i l a b l e w i t h w h i c h t o compare t h e sample i n terms o f h e a l t h c h a r a c t e r i s t i c s . However, one s t u d y from Newfoundland was found t h a t r e p o r t e d p h y s i c a l symptoms o f 172 k i d n e y p a t i e n t s t r a n s p l a n t e d f o r 5.9 + 3.7 y e a r s . The most common m e d i c a l / h e a l t h problems r e p o r t e d were f a t i g u e ( 4 0 % ) , s l e e p d i s t u r b a n c e ( 3 0 % ) , headache ( 2 9 % ) , and j o i n t p a i n (29%) ( B a r r e t t , V a v a s o u r , and P a r f r e y , 1989; 1990). A l t h o u g h s l e e p d i s t u r b a n c e was n o t r e p o r t e d as a problem f o r t h e p a t i e n t s i n t h i s sample, t h e h e a l t h c h a r a c t e r i s t i c s of t h e s t u d y sample appeared t o be s i m i l a r t o a n o t h e r group of Canadian k i d n e y t r a n s p l a n t p a t i e n t s . The p a t i e n t r e c e i v i n g c y c l o s p o r i n e t h e r a p y may e x p e r i e n c e n e u r o l o g i c , c o s m e t i c , h a e m a t o l o g i c , r e n a l , m a l i g n a n t , o r p s y c h o l o g i c s i d e e f f e c t s ( S t i l l e r & Keown, 1985). However, t h e s e major m e d i c a l / h e a l t h problem c a t e g o r i e s a r e somewhat u n d e r r e p r e s e n t e d by t h e p a t i e n t s i n t h i s s t u d y . T h i s i s an une x p e c t e d f i n d i n g c o n s i d e r i n g s u b j e c t s i n t h i s s t u d y had l i v e d w i t h t h e i r k i d n e y t r a n s p l a n t f o r a mean of 8.5 + 4.8 y e a r s and had been t a k i n g h i g h doses of immunosuppressive m e d i c a t i o n s on a l o n g - t e r m b a s i s . The C anadian Organ Replacement R e g i s t r y i s t h e n a t i o n a l i n f o r m a t i o n system on organ t r a n s p l a n t a t i o n f o r w h i c h k i d n e y t r a n s p l a n t s t a t i s t i c s a r e a v a i l a b l e . Canadian s t a t i s t i c s from 1989 i n d i c a t e t h e number o f new ESRD p a t i e n t s s t a r t i n g t r e a t m e n t 86 by gender and d e s i g n a t e d age c a t e g o r i e s (see Appendix L ) . I n a l l age c a t e g o r i e s , t h e number o f male and female ESRD p a t i e n t s s t a r t i n g t r e a t m e n t i n c r e a s e d t o m i d d l e age and d e c r e a s e d a f t e r age 65. The p r o p o r t i o n of males t o females i s a p p r o x i m a t e l y 3:2 where males predominate i n a l l age c a t e g o r i e s . I n terms o f gender, t h e r e were a l m o s t two t i m e s as many males as t h e r e were females i n t h i s sample which i s s i m i l a r t o Canadian s t a t i s t i c s . The sample f o r t h i s s t u d y i s r e a s o n a b l y r e p r e s e n t a t i v e o f l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s i n Canada (see Appendix M). The age a t ti m e of t r a n s p l a n t f o r t h e sample i n t h i s s t u d y r e f l e c t e d t h e n a t i o n a l age d i s t r i b u t i o n o f p a t i e n t s t r a n s p l a n t e d between 1981 and 1987. The mean age o f t h e sample a t t i m e o f t r a n s p l a n t was 35.3 y e a r s w i t h a range from 21 t o 60 y e a r s . S p e c i f i c a l l y , 23% of Canadian p a t i e n t s were i n t h e 25 t o 34 y e a r age group a t t i m e o f t r a n s p l a n t . I n t h i s s t u d y , 46.6% o f t h e sample was i n t h i s age group; o t h e r a d u l t age groups were a l s o r e a s o n a b l y r e p r e s e n t a t i v e of t h e n a t i o n a l t r a n s p l a n t a t i o n t r e n d s . I n Canada, o f t h e t r a n s p l a n t o p e r a t i o n s p e r f o r m e d on p a t i e n t s from t h e time k i d n e y t r a n s p l a n t programs commenced t o 1988, 86.3% o f t h e cases were c a d a v e r i c and 13.7% were l i v i n g -r e l a t e d ( C anadian Organ Replacement R e g i s t e r , 1990). I n B r i t i s h C o l u m b i a , 96.4% o f ca s e s were c a d a v e r i c and t h e r e m a i n i n g 3.6% were l i v i n g - r e l a t e d . S i m i l a r t o t h e t a r g e t p o p u l a t i o n , t h e m a j o r i t y (92%) o f t h e sample r e c e i v e d a c a d a v e r i c k i d n e y t r a n s p l a n t . The C anadian s t a t i s t i c s i n d i c a t e t h a t 92.6% o f t h e t r a n s p l a n t s p e r f ormed were f i r s t t i m e t r a n s p l a n t s . I n t h i s 87 sample, 86.4% were f i r s t t i m e t r a n s p l a n t s and t h e r e f o r e r e f l e c t s n a t i o n a l t r e n d s . Those who had a f a i l e d t r a n s p l a n t r e p o r t e d t h e cause was due t o g r a f t r e j e c t i o n (66.7%) and t h i s r e f l e c t s a s i m i l a r t r e n d t o causes of t r a n s p l a n t f a i l u r e s r e p o r t e d f o r C a n a d i a n a d u l t k i d n e y p a t i e n t s (see Appendix N). Of t h e t r a n s p l a n t c e n t r e s i n t h e p r o v i n c e , t h e r e a r e o n l y two h o s p i t a l s where a d u l t k i d n e y t r a n s p l a n t s a r e p e r f o r m e d . The s u b j e c t s i n t h i s s t u d y were o b t a i n e d t h r o u g h one h o s p i t a l t r a n s p l a n t program. A l t h o u g h k i d n e y t r a n s p l a n t o p e r a t i o n s a r e p e r f o r m e d a t two h o s p i t a l s , t r a n s p l a n t s p e r f ormed a t one h o s p i t a l commenced i n A p r i l 1986 (see Appendix 0 ) . T h e r e f o r e , t h e r e were fewer p a t i e n t s from a program t h a t commenced j u s t o v e r f o u r y e a r s ago who would have been t r a n s p l a n t e d l o n g e r t h a n t h r e e y e a r s , and p o s s i b l y few o f t h e s e p a t i e n t s would have met t h e i n c l u s i o n c r i t e r i a f o r t h i s s t u d y . The number of y e a r s s u b j e c t s i n t h i s s t u d y had l i v e d w i t h t h e i r c u r r e n t t r a n s p l a n t ranged from 3.1 t o 20.9 y e a r s . Because t o t a l s a m p l i n g of p a t i e n t s was done i n t h i s s t u d y , t h e s t a t i s t i c s from H o s p i t a l A can be used as a c o m p a r i s o n . The sample of t h i s s t u d y t h e r e f o r e appeared t o be r e a s o n a b l y r e p r e s e n t a t i v e o f t i m e s i n c e k i d n e y t r a n s p l a n t f o r t h e l o n g - t e r m k i d n e y t r a n s p l a n t p o p u l a t i o n . I n summary, t h e s t u d y sample i s r e a s o n a b l y r e p r e s e n t a t i v e o f t h e p o p u l a t i o n o f l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s i n B r i t i s h C o l u m b i a . I n terms of e d u c a t i o n a l l e v e l , t h e sample appeared t o be v e r y w e l l e d u c a t e d . Almost 50% of t h e s u b j e c t s i n d i c a t e d t h e p r e s e n c e of m e d i c a l / h e a l t h problems a s i d e from t h e i r k i d n e y d i s e a s e . However, w i t h r e s p e c t t o h e a l t h c h a r a c t e r i s t i c s , t h e 88 s u b j e c t s e x p e r i e n c e d r e l a t i v e l y few major h e a l t h / m e d i c a l problems r e l a t e d t o l o n g - t e r m immunosuppressive t h e r a p y . The sample f o r t h i s s t u d y i s a l s o r e a s o n a b l y r e p r e s e n t a t i v e o f b o t h p r o v i n c i a l and n a t i o n a l t r e n d s i n k i d n e y t r a n s p l a n t a t i o n . D i s c u s s i o n of F i n d i n g s A d i s c u s s i o n r e l a t e d t o each of t h e t h r e e r e s e a r c h q u e s t i o n s w i l l f o l l o w ; The f i n d i n g s o f t h i s r e s e a r c h w i l l be d i s c u s s e d i n r e l a t i o n t o t h e o r e t i c a l e x p e c t a t i o n s , o t h e r r e s e a r c h s t u d i e s , and m e t h o d o l o g i c a l i s s u e s . U n c e r t a i n t y The p e r c e i v e d l e v e l of u n c e r t a i n t y f o r t h i s sample o f l o n g -t e r m k i d n e y t r a n s p l a n t p a t i e n t s i s d i s c u s s e d and p o s s i b l e r e a s o n s f o r t h e v a r i a b i l i t y i n l e v e l o f u n c e r t a i n t y w i l l be p r e s e n t e d . The a r e a s o f u n c e r t a i n t y r e f l e c t e d i n t h e USS w i l l be r e l a t e d t o t h e o r e t i c a l e x p e c t a t i o n s and compared t o f i n d i n g s i n t h e l i t e r a t u r e . F i n a l l y , t h e i n s t r u m e n t used t o measure u n c e r t a i n t y w i l l be d i s c u s s e d c o n s i d e r i n g i t s p s y c h o m e t r i c p r o p e r t i e s . T h i s sample o f l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s p e r c e i v e d m o d e r a t e l y low l e v e l s o f u n c e r t a i n t y w i t h a mean s c o r e o f 103.3 u s i n g t h e u n c e r t a i n t y s c a l e . However, t h e r e was v a r i a b i l i t y i n t h e l e v e l of u n c e r t a i n t y . F i f t y - o n e s u b j e c t s (58%) had t o t a l u n c e r t a i n t y s c o r e s below t h e mean i n d i c a t i n g v e r y low l e v e l s o f u n c e r t a i n t y whereas o t h e r s had moderate t o h i g h l e v e l s o f u n c e r t a i n t y . No s t u d i e s were found i n t h e l i t e r a t u r e t h a t s p e c i f i c a l l y e v a l u a t e d l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t ' s p e r c e p t i o n s o f u n c e r t a i n t y . However, two s t u d i e s were found t h a t measured 89 u n c e r t a i n t y i n c a r d i a c p a t i e n t s . A l t h o u g h b o t h r e s e a r c h e r s used t h e M i s h e l U n c e r t a i n t y i n I l l n e s s S c a l e (Community V e r s i o n ) (MUISCV) t o measure u n c e r t a i n t y and one a l s o used an e a r l i e r v e r s i o n o f t h e USS, t h e i r f i n d i n g s can be i n c l u d e d h e r e as a co m p a r i s o n . Simurda (1988) s t u d i e d p r i m a r y and r e o p e r a t i o n c o r o n a r y a r t e r y bypass g r a f t p a t i e n t s and found t h a t b o t h groups p e r c e i v e d m o d e r a t e l y low l e v e l s of u n c e r t a i n t y w i t h means r a n g i n g from 60.8 t o 65.2 u s i n g t h e MUISCV ( h i g h e s t s c o r e p o s s i b l e was 140). I n t h e o t h e r s t u d y , F o r d (1989) examined f i r s t t i m e b i o l o g i c a l c a r d i a c v a l v e p a t i e n t s and found t h e s e p a t i e n t s t o a l s o p e r c e i v e m o d e r a t e l y low l e v e l s o f u n c e r t a i n t y w i t h a mean s c o r e o f 111.7 u s i n g t h e USS ( 4 8 - i t e m v e r s i o n ) and 67.5 u s i n g t h e MUISCV. F o r k i d n e y p a t i e n t s t r a n s p l a n t e d f o r l e s s t h a n s i x months, Hayward and c o l l e a g u e s (1989) r e p o r t e d immediate h e a l t h c o n c e r n s w h i c h i n c l u d e d t h e p o s s i b i l i t y o f r e j e c t i o n , p o s s i b i l i t y o f i n f e c t i o n , and u n c e r t a i n t y r e g a r d i n g t h e f u t u r e . F o r r e c e n t l y t r a n s p l a n t e d p a t i e n t s , t h e e v e n t s a s s o c i a t e d w i t h t h e i r new k i d n e y a r e n o v e l and u n f a m i l i a r . As p a t i e n t s l i v e w i t h t h e i r t r a n s p l a n t , t h e y g a i n e x p e r i e n c e w i t h t h e r o u t i n e s , feedback c o n c e r n i n g p r o g r e s s toward h e a l t h , and e x p e c t a t i o n s about c a r e outcomes. Thus, a f t e r l i v i n g w i t h a t r a n s p l a n t f o r t h r e e o r more y e a r s , p a t i e n t s a r e l i k e l y f a m i l i a r w i t h t h e f o l l o w - u p e v e n t s a s s o c i a t e d w i t h t h e i r k i d n e y t r a n s p l a n t . F o l l o w i n g t h i s argument and by v i r t u e of t h e i r e x p e r i e n c e , p a t i e n t s may p e r c e i v e l e s s u n c e r t a i n t y as t h e ev e n t s o f t h i s phase of t r e a t m e n t a r e more f a m i l i a r and i t i s l i k e l y t h a t t h e y have f o r m u l a t e d c l e a r e r 90 e x p e c t a t i o n s r e g a r d i n g t h e i r t r a n s p l a n t . A n o t h e r r e a s o n f o r t h e m o d e r a t e l y low l e v e l s o f u n c e r t a i n t y may be a f u n c t i o n o f t h e congruence between what i s e x p e c t e d and what i s e x p e r i e n c e d i n t r a n s p l a n t - r e l a t e d e v e n t s . M i s h e l (1981) s u g g e s t s t h a t when t h e r e i s c o n s i s t e n c y between what i s e x p e c t e d and what i s e x p e r i e n c e d , event congruence may be a f a c t o r i n r e d u c i n g u n c e r t a i n t y . An i n t e g r a l p a r t o f an ESRD p a t i e n t ' s d e c i s i o n t o have a t r a n s p l a n t h i n g e s upon t h e p o s i t i v e and n e g a t i v e e x p e c t a t i o n s t h a t a r e a n t i c i p a t e d as a r e s u l t o f t h e t r a n s p l a n t . T r a n s p l a n t a t i o n i s o f t e n viewed as a means by w h i c h a p e r s o n can r e t u r n t o a normal l i f e . The p a t i e n t w i l l u l t i m a t e l y judge t h e s u c c e s s o f t h e p r o c e d u r e by whether t h e e x p e c t a t i o n s o f t h e t r e a t m e n t a r e met. I f t h e e x p e c t a t i o n s o f a normal l i f e a r e met, and t h e p e r s o n f e e l s a p o s i t i v e change i n t h e i r p h y s i c a l s t a t u s , management o f symptoms, and e f f e c t i v e n e s s o f s u r g i c a l t r e a t m e n t , i t may be r e a s o n a b l e t o e x p e c t p a t i e n t s t o p e r c e i v e l o w e r l e v e l s o f u n c e r t a i n t y . One f a c t o r t h a t may e x p l a i n t h e m o d e r a t e l y low l e v e l s o f u n c e r t a i n t y p e r c e i v e d by t h e p a t i e n t s i n t h i s s t u d y i s t h e f e e l i n g o f o p t i m i s m stemming from t h e i r improved h e a l t h s t a t u s . ESRD p a t i e n t s a r e s e r i o u s l y i l l a t t h e p r e - t r a n s p l a n t s t a g e and t h e i r h e a l t h s t a t u s improves s i g n i f i c a n t l y w i t h a k i d n e y t r a n s p l a n t . I t i s p o s s i b l e t h a t p a t i e n t s e v a l u a t e t h e degree o f s u c c e s s a c h i e v e d w i t h t h e i r new k i d n e y t r a n s p l a n t and v i e w t h e i r f u t u r e i n t h i s l i g h t . T h e r e f o r e , p a t i e n t s who e x p e r i e n c e an improvement i n t h e i r h e a l t h s t a t u s because o f t h e i r t r a n s p l a n t may p e r c e i v e l e s s u n c e r t a i n t y . A n o t h e r p l a u s i b l e e x p l a n a t i o n f o r t h e m o d e r a t e l y low l e v e l s o f u n c e r t a i n t y may be a f u n c t i o n o f c l i n i c a l and t e c h n o l o g i c a l advances i n t h e t r a n s p l a n t a t i o n f i e l d . Over t h e l a s t decade, p r o g r e s s i v e improvements i n organ procurement and p r e s e r v a t i o n , a l o n g w i t h t h e i n t r o d u c t i o n o f new immunosuppressive a g e n t s , have i n c r e a s e d t h e s u c c e s s and s u r v i v a l r a t e s o f k i d n e y t r a n s p l a n t p a t i e n t s . U n l i k e o t h e r organ r e p l a c e m e n t t h e r a p i e s , k i d n e y t r a n s p l a n t p a t i e n t s have a unique t r e a t m e n t o p t i o n a v a i l a b l e t h a t p r o v i d e s a back-up p r o c e d u r e t o keep them a l i v e i f a t r a n s p l a n t f a i l s . I n a d d i t i o n , f o r some k i d n e y p a t i e n t s t h e r e may be t h e p o s s i b i l i t y o f a l i v i n g - r e l a t e d donor t r a n s p l a n t . I f a t r a n s p l a n t does f a i l , d i a l y s i s i s an a l t e r n a t i v e l i f e s a v i n g measure t h a t a l l o w s p a t i e n t s t o m a i n t a i n k i d n e y f u n c t i o n w h i l e t h e y w a i t f o r a s u i t a b l e donor k i d n e y t o become a v a i l a b l e . A l t h o u g h some p a t i e n t s may be a c u t e l y aware o f t h e p o s s i b i l i t y o f g r a f t f a i l u r e , t h e y may a l s o b e l i e v e t h a t t h e r e i s no p o i n t w o r r y i n g about such an event u n t i l i t happens. P a t i e n t s may f e e l t h a t t h e y can r e l y on such improvements i n t r a n s p l a n t a t i o n t e c h n o l o g y s h o u l d t h e y need t o make use o f t h e h e a l t h c a r e system i n t h e f u t u r e . H a v i n g knowledge about t h e improvements i n h e a l t h c a r e t e c h n o l o g y may h e l p t h e s e p a t i e n t s t o m o d i f y t h e i r u n c e r t a i n t y , and t h e r e f o r e may e x p l a i n t h e l o w e r l e v e l o f u n c e r t a i n t y i n t h i s sample. There was v a r i a b i l i t y i n t h e l e v e l o f u n c e r t a i n t y p e r c e i v e d by t h e s u b j e c t s . A l t h o u g h t h e m a j o r i t y o f t h e sample had low l e v e l s , some s u b j e c t s d i d e x p e r i e n c e moderate t o h i g h l e v e l s o f u n c e r t a i n t y . P o s s i b l e e x p l a n a t i o n s f o r t h o s e who had 92 c o n s i d e r a b l y h i g h e r l e v e l s o f u n c e r t a i n t y c o u l d be r e l a t e d t o : (1) c h r o n i c c o n c e r n s r e g a r d i n g k i d n e y t r a n s p l a n t a t i o n ; (2) number of h e a l t h / m e d i c a l problems a s i d e from k i d n e y d i s e a s e ; (3) e d u c a t i o n a l l e v e l ; and, (4) d e v e l o p m e n t a l t a s k s and l i f e e x p e r i e n c e s . I n t h e d i s c u s s i o n t o f o l l o w , each o f t h e s e p o s s i b i l i t i e s w i l l be e x p l o r e d s e p a r a t e l y . One p o s s i b l e r e a s o n f o r t h o s e who had c o n s i d e r a b l y h i g h e r l e v e l s o f u n c e r t a i n t y c o u l d be r e l a t e d t o a narrow o r r e s t r i c t i v e f o c u s o f d i s e a s e and c h r o n i c c o n cerns r e g a r d i n g maintenance o f g r a f t f u n c t i o n . Because g r a f t s u r v i v a l r a t e s d e c l i n e as t i m e goes on, i t may be r e a s o n a b l e t o e x p e c t some l o n g - t e r m p a t i e n t s t o p e r c e i v e h i g h e r l e v e l s of u n c e r t a i n t y . W h i l e a k i d n e y t r a n s p l a n t may f r e e p a t i e n t s of many of t h e c h r o n i c c o n d i t i o n s t h a t accompany k i d n e y d i s e a s e , p a t i e n t s may become weary o f t h e u n p l e a s a n t s i d e e f f e c t s o f m e d i c a t i o n s needed t o m a i n t a i n g r a f t f u n c t i o n . Even though k i d n e y t r a n s p l a n t a t i o n i s f r e q u e n t l y c o n s i d e r e d an o p p o r t u n i t y f o r renewed h e a l t h (Simmons e t a l . , 1977), some p a t i e n t s may f e e l t h a t t h e i r t r a n s p l a n t d i d not meet t h e i r e x p e c t a t i o n o f l i v i n g a normal l i f e w h i c h may c o n t r i b u t e t o a h i g h e r l e v e l of u n c e r t a i n t y . A n o t h e r r e a s o n f o r t h o s e w i t h h i g h e r l e v e l s o f u n c e r t a i n t y may be r e l a t e d t o t h e number of h e a l t h o r m e d i c a l p r o b l e m s . There was a s i g n i f i c a n t p o s i t i v e r e l a t i o n s h i p between t h e number o f h e a l t h problems r e p o r t e d and l e v e l of u n c e r t a i n t y . T h i s f i n d i n g i s not a s u r p r i s e s i n c e i t i s r e a s o n a b l e t o e x p e c t t h a t some p a t i e n t s w i t h more h e a l t h problems c o u l d e x p e r i e n c e more d i f f i c u l t l y a p p r a i s i n g t h e i n t e r n a l cues t h a t i n d e x t h e p h y s i o l o g i c a l s t a t e o f t h e i r k i d n e y c o n d i t i o n . P a t i e n t s w i t h h e a l t h problems may d e v e l o p m i s c o n c e p t i o n s about symptoms o r be u n a b l e t o d e t e r m i n e meanings of symptoms. I t i s p o s s i b l e t h a t t h e c o n t i n u a t i o n o f h e a l t h problems and t h e p e r s i s t e n c e o f h e a l t h problems o v e r t i m e may a l s o i n f l u e n c e t h e l e v e l o f u n c e r t a i n t y . An a d d i t i o n a l e x p l a n a t i o n f o r t h e h i g h e r l e v e l o f u n c e r t a i n t y may be a f u n c t i o n of t h e e d u c a t i o n a l l e v e l o f t h e sample. A s i g n i f i c a n t n e g a t i v e c o r r e l a t i o n was found between e d u c a t i o n and u n c e r t a i n t y . P a t i e n t s i n t h i s s t u d y who had a l o w e r l e v e l o f e d u c a t i o n had h i g h e r l e v e l o f u n c e r t a i n t y . T h i s f i n d i n g s u p p o r t e d M i s h e l ' s (1984) c o n c l u s i o n t h a t p a t i e n t s who had l e s s t h a n a h i g h s c h o o l e d u c a t i o n d e monstrated h i g h e r l e v e l s o f u n c e r t a i n t y i n t h e form of more p e r c e i v e d c o m p l e x i t y c o n c e r n i n g t r e a t m e n t and more d i f f i c u l t y u n d e r s t a n d i n g t h e system o f c a r e . A n o t h e r p o s s i b l e e x p l a n a t i o n f o r t h i s f i n d i n g c o u l d be r e l a t e d t o t h e sample s t u d i e d . S i n c e t h e m a j o r i t y (77.3%) of t h e sample had 12 o r more y e a r s o f e d u c a t i o n , t h e d i s t r i b u t i o n may have been skewed and as s u c h , t h i s f i n d i n g must be v iewed w i t h c a u t i o n . F i n a l l y , u n c e r t a i n t y s c o r e s were s e e m i n g l y u n a f f e c t e d by demographic c h a r a c t e r i s t i c s of age and sex. 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 w h i l e t h e d i f f e r e n c e was not s i g n i f i c a n t , younger p a t i e n t s s c o r e d h i g h e r on t h e u n c e r t a i n t y s c a l e t h a n o l d e r p a t i e n t s . A l t h o u g h t h e r e may be a s l i g h t t endency f o r younger p a t i e n t s t o e x p e r i e n c e h i g h e r l e v e l s of u n c e r t a i n t y , no c l e a r d i r e c t i o n a l r e l a t i o n s h i p was e v i d e n c e d ( r =-.20, p_ =.06). T o t a l u n c e r t a i n t y s c o r e s f o r s u b j e c t s who s c o r e d above 175 can be 94 r e v i e w e d i n Appendix P. R e l a t e d t o age a r e t h e d i f f e r e n c e s t h a t e x i s t between d e v e l o p m e n t a l t a s k s o f t h e young a d u l t , m i d d l e a d u l t , and o l d e r a d u l t ( N e u g a r t e n , 1979). D i f f e r e n c e s t h a t e x i s t between t h e d e v e l o p m e n t a l t a s k s and l i f e e x p e r i e n c e s of t h e young and o l d e r a d u l t s c o u l d p o s s i b l y e x p l a i n t h e v a r i a b i l i t y i n s u b j e c t s ' p e r c e p t i o n s o f u n c e r t a i n t y . I n t h i s s t u d y , t h o s e p a t i e n t s w i t h t h e h i g h e s t u n c e r t a i n t y were younger t h a n 52 y e a r s of age and on a v e r a g e , had l i v e d w i t h t h e i r t r a n s p l a n t a y e a r l e s s t h a n p a t i e n t s who e x p e r i e n c e d l o w e r l e v e l s o f u n c e r t a i n t y . I n young a d u l t h o o d , t h e p e r s o n i s concerned w i t h i n v e s t i n g o n e s e l f i n t h o s e a r e a s of l i f e w h ich a r e of p r i m a r y i m p o r t a n c e such as f a m i l y , work, f r i e n d s , and community (Whetten & Cameron, 1984). A t t h i s d e v e l o p m e n t a l s t a g e , e s t a b l i s h i n g a p l a c e i n s o c i e t y and a c h i e v i n g l i f e g o a l s t h a t have been s e t a r e i m p o r t a n t t a s k s . F o r younger p a t i e n t s w i t h t h e b u l k o f t h e i r major l i f e d e c i s i o n s b e f o r e them, i t may be t h a t t h o s e who p e r c e i v e c o n s i d e r a b l y h i g h e r l e v e l s o f u n c e r t a i n t y may be e x p e r i e n c i n g d i f f i c u l t y a c c e p t i n g on a l o n g - t e r m b a s i s whatever r e s t r i c t i o n s t h e i r k i d n e y s i t u a t i o n has p l a c e d on t h e i r l i v e s . O l d e r p a t i e n t s have a wide range of knowledge and l i f e e x p e r i e n c e i n ways t h a t a younger p e r s o n cannot know. A f t e r l i v i n g w i t h a t r a n s p l a n t f o r a g r e a t e r p o r t i o n o f t h e i r l i f e , o l d e r p a t i e n t s may a l s o be more w i l l i n g t o a c c e p t t h e i r k i d n e y c o n d i t i o n and t h e r e s t r i c t i o n s i t has p l a c e d on t h e i r l i v e s . F o r o l d e r p a t i e n t s who have c o m p l e t e d t h e major p a r t of t h e i r l i f e work, i t i s r e a s o n a b l e t o e x p e c t t h a t t h e y may e x p e r i e n c e l o w e r l e v e l s o f u n c e r t a i n t y . A c c o r d i n g t o t h e s u b s c a l e means, u n c e r t a i n t y was composed o f f i v e a r e a s : i n d e f i n i t e n e s s , r e l i a b i l i t y o r d e p e n d a b i l i t y , p r o b a b i l i t y , b e i n g d o u b t f u l , and i n d e t e r m i n a t e n e s s . A c c o r d i n g t o t h e i t e m means f o r each o f t h e f a c t o r s , l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s ' a p p r a i s a l s o f u n c e r t a i n t y appeared t o be p r i m a r i l y g e n e r a t e d by t h e i n d e t e r m i n a t e n e s s of t h e s i t u a t i o n . T h i s was f o l l o w e d by i n d e f i n i t e n e s s and p r o b a b i l i t y w h i c h s u g g e s t e d o t h e r a r e a s o f u n c e r t a i n t y . Comparison o f t h e f i n d i n g s o f t h i s s t u d y w i t h F o r d (1989) i s d i f f i c u l t because t h e l a t t e r s t u d y used a 4 8 - i t e m v e r s i o n o f t h e USS i n s t r u m e n t and a f o u r f a c t o r a n a l y s i s i n c o n t r a s t t o t h e 60-i t e m v e r s i o n and f i v e f a c t o r a n a l y s i s used i n t h i s s t u d y . A c c o r d i n g t o t h e f r e q u e n c i e s w i t h i n t h e f o u r f a c t o r s o b t a i n e d by F o r d (1989), n ot b e i n g a b l e t o f o r e t e l l t h e f u t u r e i n terms of t h e symptoms and outcomes p r o v i d e d t h e most u n c e r t a i n t y f o r b i o l o g i c a l v a l v e p a t i e n t s . The i t e m means on t h e USS f o r t h i s group o f p a t i e n t s can be r e v i e w e d i n Appendix Q. There were f i v e i tems t h a t g e n e r a t e d t h e h i g h e s t u n c e r t a i n t y : whether my k i d n e y c o n d i t i o n w i l l be t h e same i n f i v e y e a r s ; whether I w i l l be a b l e t o m a i n t a i n my p r e s e n t l e v e l o f f u n c t i o n i n g ; whether my k i d n e y c o n d i t i o n w i l l be i n v o l v e d i n my d e a t h ; whether my k i d n e y c o n d i t i o n w i l l a f f e c t my l i f e g o a l s ; and, whether my k i d n e y c o n d i t i o n w i l l r e t u r n . H i g h e r s c o r e s on t h e s e i t e m s suggest t h a t not knowing t h e f u t u r e , b e i n g u n a b l e t o f o r e c a s t t h e f u t u r e , and h a v i n g f e e l i n g s t h a t t h e f u t u r e outcome o f t h e i r i l l n e s s was u n p r e d i c t a b l e were a r e a s t h a t g e n e r a t e d t h e most u n c e r t a i n t y f o r t h e s e p a t i e n t s . When u n c e r t a i n t y i s composed o f concerns r e g a r d i n g t h e f u t u r e , t h i s may i n d i c a t e t h a t t h o s e p a t i e n t s r e c o g n i z e t h e i r i n a b i l i t y t o c o n t r o l t h e t r e a t m e n t s i t u a t i o n o r t h e f u t u r e outcome o f t h e i r i l l n e s s . I t i s p o s s i b l e t h a t persons who p r e f e r c o n t r o l i n a s i t u a t i o n t h a t o f f e r s l i t t l e p o s s i b i l i t y f o r c o n t r o l may e x p e r i e n c e more u n c e r t a i n t y . The USS i n s t r u m e n t had an i n t e r n a l c o n s i s t e n c y a l p h a c o e f f i c i e n t o f .96 i n d i c a t i n g h i g h r e l i a b i l i t y . The f i v e f a c t o r s had i n t e r n a l c o n s i s t e n c i e s r a n g i n g from .68 t o .93 d e m o n s t r a t i n g good r e l i a b i l i t y . F o r o v e r a l l r e l i a b i l i t y s t a n d a r d s , a c o e f f i c i e n t o f .70 i s s u f f i c i e n t f o r b a s i c r e s e a r c h and f o r newer s c a l e s ( N u n n a l l y , 1978). I n t h i s s t u d y , t h e f a c t o r w i t h t h e l o w e s t a l p h a had t h e l e a s t number of items ( b e i n g d o u b t f u l ) and c o n s i s t e d o f 7 i t e m s . I t i s p o s s i b l e t h a t t h e l o w e r a l p h a r e f l e c t s t h e s m a l l e r number of items on t h i s f a c t o r . A l o n g w i t h t h e i r r e s p o n s e s , some s u b j e c t s i n t h i s s t u d y i d e n t i f i e d t h e d i f f i c u l t i e s t h a t t h e y e n c o u n t e r e d w i t h some i t e m s . The term 'symptoms' was c o n s i d e r e d ambiguous because i t was not c l e a r whether symptoms r e l a t e d t o k i d n e y f u n c t i o n o r s i d e e f f e c t s o f m e d i c a t i o n s . In a d d i t i o n , t h e term ' o t h e r s ' was ambiguous as i t c o u l d mean any p e r s o n such as p r o f e s s i o n a l , k i n , f r i e n d , o r f e l l o w p a t i e n t . F i n a l l y , some p a t i e n t s added t h a t a c h r o n i c c o n d i t i o n c o u l d not be e l i m i n a t e d o r c u r e d . R a t h e r , a c h r o n i c c o n d i t i o n c o u l d o n l y be c o r r e c t e d . I n summary, p a t i e n t s i n t h i s s t u d y p e r c e i v e d m o d e r a t e l y low l e v e l o f u n c e r t a i n t y and t h i s seemed t o be c o n s i s t e n t w i t h p r e v i o u s r e s e a r c h f i n d i n g s (Simurda, 1988; F o r d , 1989). The t h e o r y o f u n c e r t a i n t y i n i l l n e s s h e l p e d t o e x p l i c a t e p o s s i b l e 97 r e a s o n s f o r t h e v a r i a b i l i t y i n l e v e l o f u n c e r t a i n t y f o r t h e p a t i e n t s i n t h i s s t u d y . I t may be t h a t as p a t i e n t s g a i n e x p e r i e n c e w i t h l i v i n g w i t h t h e i r t r a n s p l a n t , t h e y a r e a b l e t o r e s o l v e , on a l o n g - t e r m b a s i s t h e outcomes o f some o f t h e e v e n t s g i v i n g r i s e t o t h e i r u n c e r t a i n t y . The n a t u r e o f t h e u n c e r t a i n t y e x p e r i e n c e d by l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s appeared t o be g e n e r a t e d by t h e i n d e t e r m i n a t e n e s s o f t h e s i t u a t i o n . C o p i n q S t r a t e g i e s The r e v i s e d 6 0 - i t e m JCS was used t o examine t h e use o f c o p i n g s t r a t e g i e s i n t h i s group of p a t i e n t s a c c o r d i n g t o e i g h t s u b s c a l e s . By f a c t o r a n a l y z i n g t h i s s e t o f c o p i n g s t r a t e g i e s , J a l o w i e c (1987) i d e n t i f i e d e i g h t c a t e g o r i e s o f c o p i n g s t r a t e g i e s ( c o p i n g s t y l e s ) . The n a t u r e o f each c o p i n g s t y l e w i l l be d e s c r i b e d and p o s s i b l e r e a s o n s f o r t h e v a r i a b i l i t y i n use o f c o p i n g s t y l e s i n t h i s sample w i l l be d i s c u s s e d . C o p i n g s t y l e s w i l l be r e l a t e d t o t h e o r e t i c a l e x p e c t a t i o n s and compared t o f i n d i n g s i n t h e l i t e r a t u r e . F i n a l l y , t h e i n s t r u m e n t used t o measure c o p i n g w i l l be d i s c u s s e d c o n s i d e r i n g i t s p s y c h o m e t r i c p r o p e r t i e s . C o n f r o n t i v e c o p i n g d e s c r i b e s d e l i b e r a t e e f f o r t s t o p r e v e n t o r c o n t r o l t h e problem t h r o u g h c o n s t r u c t i v e p r o b l e m - s o l v i n g and d i r e c t a c t i o n . I t c o n t a i n s p r i m a r i l y p r o b l e m - f o c u s e d s t r a t e g i e s t h a t a r e s i m i l a r t o s t r a t e g i e s used f o r p r o b l e m - s o l v i n g . As s u c h , p r o b l e m - f o c u s e d e f f o r t s a r e o f t e n d i r e c t e d a t d e f i n i n g t h e prob l e m , g e n e r a t i n g a l t e r n a t i v e s o l u t i o n s , w e i g h t i n g t h e a l t e r n a t i v e s i n terms o f t h e i r c o s t s and b e n e f i t s , c h o o s i n g among them, and a c t i n g . " T r i e d t o handle t h i n g s one s t e p a t a t i m e . " 98 " T r i e d t o l o o k a t t h e problem o b j e c t i v e l y and see a l l s i d e s . " " T r i e d t o f i n d out more about t h e problem." E v a s i v e c o p i n g d e s c r i b e s c o g n i t i v e p r o c e s s e s d i r e c t e d a t l e s s e n i n g e m o t i o n a l d i s t r e s s t h r o u g h a c t i v i t i e s such as a v o i d a n c e and d i s t a n c i n g w h i c h d i v e r t s a t t e n t i o n from t h e s o u r c e o f s t r e s s . T h i s c o p i n g s t y l e c o n t a i n s p r i m a r i l y e m o t i o n - f o c u s e d s t r a t e g i e s . One group of a v o i d a n t s t r a t e g i e s w h i c h Folkman and L a z a r u s (1988) l a b e l as " e s c a p e - a v o i d a n c e " d e s c r i b e e f f o r t s t o escape t h r o u g h w i s h f u l t h i n k i n g i n a d d i t i o n t o e f f o r t s t o a v o i d t h e s i t u a t i o n . "Wished t h a t t h e problem would go away." "Daydreamed about a n o t h e r l i f e . " " S l e p t more th a n u s u a l . " D i s t a n c i n g d e s c r i b e s e f f o r t s t o d e t a c h o n e s e l f where t h e p e r s o n acknowledges t h e t r o u b l i n g problem but does not want t o d e a l w i t h i t s e m o t i o n a l s i g n i f i c a n c e (e.g. " T o l d y o u r s e l f t h a t t h i s p roblem was r e a l l y n o t t h a t i m p o r t a n t " ) . O p t i m i s t i c c o p i n g d e s c r i b e s c o g n i t i v e e f f o r t s t h a t a r e used t o m a i n t a i n a p o s i t i v e o u t l o o k and b u i l d hope. I t c o n t a i n s p r i m a r i l y e m o t i o n - f o c u s e d s t r a t e g i e s but t h e r e a r e a l s o p roblem-f o c u s e d s t r a t e g i e s ( e . g . "Hoped t h a t t h i n g s would get b e t t e r " ) . To m a i n t a i n a h o p e f u l p e r s p e c t i v e , some e m o t i o n - f o c u s e d s t r a t e g i e s such as p o s i t i v e comparisons o r w r e s t i n g p o s i t i v e v a l u e from n e g a t i v e s i t u a t i o n s , do not n e c e s s a r i l y r e q u i r e t h a t r e a l i t y be d i s t o r t e d . "Compared y o u r s e l f w i t h o t h e r p e o p l e who were i n t h e same s i t u a t i o n " . "Thought about t h e good t h i n g s i n y o u r l i f e . " However, o t h e r s t r a t e g i e s used t o m a i n t a i n hope and o p t i m i s m l e n d t h e m s e l v e s t o an i n t e r p r e t a t i o n o f s e l f - d e c e p t i o n o r r e a l i t y d i s t o r t i o n . " T o l d y o u r s e l f not t o w o r r y because 99 e v e r y t h i n g would p r o b a b l y work out f i n e . " A f a t a l i s t i c c o p i n g s t y l e d e s c r i b e s e f f o r t s t h a t a r e i n a sense o p p o s i t e t o o p t i m i s t i c c o p i n g . That i s , t h e p e r s o n a t t e m p t s t o d e f e r hope w i t h b e l i e f s t h a t a l l e v e n t s a r e p r e d i c t e d by f a t e and beyond one's c o n t r o l i n o r d e r t o l e s s e n d i s t r e s s . I t c o n t a i n s b o t h problem- and e m o t i o n - f o c u s e d c o p i n g . As t h e name s u g g e s t s , such methods l e n d themselves t o a h o p e l e s s p e r s p e c t i v e ( e . g . "Resigned y o u r s e l f t o t h e s i t u a t i o n because t h i n g s l o o k e d h o p e l e s s " ) . However, o t h e r s methods i n t h i s c a t e g o r y c o u l d a l s o d e s c r i b e r e a l i t y - b a s e d a t t e m p t s u s i n g d i r e c t a c t i o n t h a t c o u l d h e l p t o c r e a t e a more c e r t a i n immediate environment and f u t u r e f o r t h e p e r s o n ("Prepared f o r t h e w o r s t t h a t c o u l d happen"), and o t h e r s i n v o l v i n g p a s s i v e a c c e p t a n c e as a p r o t e c t i v e mechanism ("Accepted t h e s i t u a t i o n because v e r y l i t t l e c o u l d be done"). Emotive c o p i n g r e f e r s t o c o g n i t i v e and b e h a v i o u r s e f f o r t s d i r e c t e d a t v e n t i l a t i n g f e e l i n g s . "Got mad and l e t o f f steam." " W o r r i e d about t h e problem." To a l a r g e e x t e n t , t h e s e c o p i n g e f f o r t s f a l l under t h e r u b r i c o f e m o t i o n - f o c u s e d s t r a t e g i e s . O t h e r s t r a t e g i e s i n t h i s s t y l e d e s c r i b e c o g n i t i v e e f f o r t s t o acknowledge r e s p o n s i b i l i t y f o r t h e problem w h i c h s u g g e s t s a degree of h o s t i l i t y and d i s p l a c e m e n t o f anger ( e . g . "Took out y o u r t e n s i o n s on someone e l s e " ) , and r i s k - t a k i n g b e h a v i o u r s ("Did s omething i m p u l s i v e o r r i s k y " ) . P a l l i a t i v e c o p i n g d e s c r i b e s e f f o r t s t o r e duce o r c o n t r o l d i s t r e s s w i t h b e h a v i o u r s t h a t w i l l i n c r e a s e t h e chances of making t h e p e r s o n f e e l b e t t e r . I t c o n s i s t s of p r i m a r i l y emotion f o c u s e d s t r a t e g i e s . S e l e c t i v e a t t e n t i o n o r a v o i d a n c e s t r a t e g i e s 100 h e l p t o make t h e p e r s o n f e e l b e t t e r by a t t e n d i n g t o s e l e c t e d a s p e c t s o f t h e problem, o r t e m p o r a r i l y p u t t i n g a s i d e t h o u g h t s about t h e problem. " T r i e d t o d i s t r a c t y o u r s e l f by d o i n g something t h a t you e n j o y . " " T r i e d t o keep busy and work h a r d e r . " When s t r a t e g i e s such as p h y s i c a l a c t i v i t y o r r e l a x a t i o n a r e used f o r t h e purpose o f g e t t i n g away from a problem o r p a r t i c u l a r s i t u a t i o n , t h e y can be seen as ways of c o p i n g by a v o i d a n c e . Such s t r a t e g i e s may have t h e added b e n e f i t o f making t h e p e r s o n f e e l p h y s i c a l l y b e t t e r , t h u s s e r v i n g a p a l l i a t i v e f u n c t i o n . The r e m a i n i n g s t r a t e g i e s i n t h i s s t y l e c o u l d f a l l under t h e e s c a p e -a v o i d a n t c a t e g o r y w h i c h d e s c r i b e s e f f o r t s t o escape t h r o u g h e a t i n g , smoking, d r i n k i n g , o r u s i n g drugs o r m e d i c a t i o n s . S u p p o r t a n t c o p i n g d e s c r i b e s e f f o r t s t h a t b o l s t e r one's sense of s e c u r i t y by w o r k i n g t h r o u g h t h e problem by d i s c u s s i o n and i n t e r a c t i o n w i t h o t h e r s . I t d e s c r i b e s methods o f s e e k i n g c o m f o r t i n g i n f o r m a t i o n from t r u s t e d p e r s o n a l , p r o f e s s i o n a l , and s p i r i t u a l s o u r c e s t h a t a r e d i r e c t e d a t h e l p i n g t h e p e r s o n t o manage o r s o l v e t h e problem and c o n t a i n s b o t h forms o f c o p i n g . I t i s a l s o d e s c r i b e s h o p e - m a i n t a i n i n g e f f o r t s t o seek i n f o r m a t i o n a l s u p p o r t from t h e environment t h a t i s c o n s i s t e n t w i t h t h e a t t i t u d e s and f a i t h a p e r s o n h o l d s about a f i x e d s i t u a t i o n . "Prayed o r put t r u s t i n God." " T a l k e d t h e p r o b l e m o v e r w i t h p e o p l e who had been i n a s i m i l a r s i t u a t i o n . " S e l f - r e l i a n t c o p i n g d e s c r i b e s e f f o r t s t o h a n d l e t h e problem u s i n g methods wh i c h a r e aimed a t i n c r e a s i n g one's sense o f c o n t r o l and e f f o r t s a t r e g u l a t i n g one's f e e l i n g s . I t c o n t a i n s b o t h problem- and e m o t i o n - f o c u s e d s t r a t e g i e s . "Kept y o u r f e e l i n g s 101 t o y o u r s e l f . " " T r i e d t o keep your f e e l i n g s under c o n t r o l . " "Thought about how you ha n d l e d o t h e r problems i n t h e p a s t . " " T r i e d t o improve y o u r s e l f i n some way so you c o u l d h a n d l e t h e s i t u a t i o n . " No r e s e a r c h has been done t h a t examined t h e use o f c o p i n g s t r a t e g i e s i n k i d n e y p a t i e n t s t r a n s p l a n t e d l o n g e r t h a n f o u r y e a r s u s i n g t h e r e v i s e d JCS i n s t r u m e n t . However, S u t t o n and Murphy (1989) s t u d i e d c o p i n g i n k i d n e y p a t i e n t s t r a n s p l a n t e d l e s s t h a n f o u r y e a r s . Other r e s e a r c h e r s ( E i c h e l , 1986; B a l d r e e e t a l . , 1982; G u r k l i s & Menke, 1988) have examined t h e use o f c o p i n g s t r a t e g i e s w i t h o t h e r ESRD p o p u l a t i o n s such as CAPD and h a e m o d i a l y s i s p a t i e n t s . A l l t h e s e r e s e a r c h e r s used t h e o r i g i n a l 4 0 - i t e m v e r s i o n o f t h e JCS. Because t h e s e r e s e a r c h e r s used a two f a c t o r a n a l y s i s and t h e o r i g i n a l v e r s i o n o f t h e JCS, t h e i r f i n d i n g s a r e d i f f i c u l t t o compare w i t h t h i s s t u d y w h i c h used t h e e i g h t f a c t o r a n a l y s i s and t h e r e v i s e d 6 0 - i t e m i n s t r u m e n t . I n a d d i t i o n , s i n c e t h i s f a c t o r s t r u c t u r e had not been used i n a p a t i e n t p o p u l a t i o n s i m i l a r t o t h a t used i n t h i s s t u d y , no d i r e c t c o m p a r i s o n c o u l d be done. However, s u p p o r t i n g e v i d e n c e f o r v a r i o u s components can be i d e n t i f i e d . Now t h a t each o f t h e e i g h t c o p i n g s t y l e s has been d e s c r i b e d , t h e t y p e and f r e q u e n c y of c o p i n g s t y l e s w i l l be d i s c u s s e d and p o s s i b l e r e a s o n s f o r t h e v a r i a b i l i t y i n use of c o p i n g s t y l e s w i l l be p r e s e n t e d . I n t h e s i t u a t i o n o f c o p i n g w i t h t h e g e n e r a l s t r e s s o f l i v i n g w i t h a l o n g - t e r m k i d n e y t r a n s p l a n t , p a t i e n t s i n t h i s s t u d y appeared t o use a l l modes of c o p i n g . A c c o r d i n g t o t h e s u b s c a l e means, l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s 102 p r e d o m i n a t e l y used o p t i m i s t i c , s e l f - r e l i a n t , c o n f r o n t i v e , p a l l i a t i v e and s u p p o r t a n t c o p i n g . E v a s i v e , f a t a l i s t i c , and emotive c o p i n g were used l e a s t . I f t h e o v e r a l l o b j e c t i v e o f k i d n e y t r a n s p l a n t a t i o n i s r e h a b i l i t a t i o n o f t h e p e r s o n t o h i s o r her p r e - i l l n e s s l e v e l o f f u n c t i o n i n g , t h e n i t i s r e a s o n a b l e t o e x p e c t t h a t t h i s group o f p a t i e n t s would most f r e q u e n t l y use o p t i m i s t i c c o p i n g and f i n d i t e f f e c t i v e i n an attempt t o t r y and l i v e as normal a l i f e as p o s s i b l e . A p o s i t i v e a t t i t u d e was found t o be a u s e f u l c o p i n g method f o r a d u l t k i d n e y p a t i e n t s w i t h i n t h e f i r s t s i x months o f t r a n s p l a n t a t i o n (White e t a l . , 1990). I t may be t h a t h o l d i n g a p o s i t i v e o u t l o o k l e a d s t o an i n d i v i d u a l ' s sense o f c o n t r o l o r m a s t e r y o v e r t h e s i t u a t i o n , t h e r e b y becoming a v e r y i m p o r t a n t p s y c h o l o g i c a l r e s o u r c e f o r c o p i n g . Long-term k i d n e y t r a n s p l a n t p a t i e n t s i n t h i s s t u d y seemed t o p r e f e r t o use s e l f - r e l i a n t c o p i n g , t h a t i s w o r k i n g t h i n g s o ut f o r t h e m s e l v e s , r a t h e r t h a n from persons who had been i n a s i m i l a r s i t u a t i o n . I n a d d i t i o n , r a t h e r t h a n s o l i c i t i n g a d v i c e from o t h e r s , s u b j e c t s were more l i k e l y t o use e x p e r i e n c e as a g u i d e f o r c o p i n g w i t h t h e i r s i t u a t i o n which i s e v i d e n t i n i t e m s such as "Thought about how you h a n d l e d o t h e r problems i n t h e p a s t " w h i c h was a f r e q u e n t l y used s t r a t e g y . T h i s i s a s i m i l a r f i n d i n g t o t h e S u t t o n and Murphy (1989) s t u d y where k i d n e y p a t i e n t s t r a n s p l a n t e d l e s s t h a n f o u r y e a r s r e p o r t e d d r a w i n g on p a s t e x p e r i e n c e as a f r e q u e n t l y used s t r a t e g y . I t i s p o s s i b l e t h a t t h e a b i l i t y t o l e a r n from e x p e r i e n c e i s a f u n c t i o n of e d u c a t i o n . O v e r a l l , t h e v a s t m a j o r i t y o f s u b j e c t s were w e l l e d u c a t e d . H a v i n g a h i g h e r 103 l e v e l o f e d u c a t i o n may e n a b l e a p e r s o n t o r e c o g n i z e a s s o c i a t i o n s among f a c t o r s more r e a d i l y w h i c h may f a c i l i t a t e t r a n s f e r e n c e o f knowledge and u t i l i z a t i o n o f p r e v i o u s l e a r n e d e f f e c t i v e c o p i n g b e h a v i o u r s . C o n f r o n t i v e c o p i n g i n c l u d e s v i g i l a n t s t r a t e g i e s t h a t were used t o d i r e c t a t t e n t i o n toward t h e problem i n a e f f o r t t o p r e v e n t o r c o n t r o l i t . S p e c i f i c e f f o r t s t h a t were used i n c l u d e d forms of c o p i n g such as i n f o r m a t i o n s e a r c h and p l a n f u l p roblem-s o l v i n g . I n f o r m a t i o n s e e k i n g i s d e s c r i b e d by Cohen and L a z a r u s (1979) as a b a s i c form of c o p i n g w h i c h i s u s u a l l y used by p a t i e n t s i n new s i t u a t i o n s . W h i l e l i v i n g w i t h a t r a n s p l a n t i s not a new s i t u a t i o n f o r t h e p a t i e n t s i n t h i s s t u d y , i t would seem t h a t t h e y c o n t i n u e t o f i n d i t a u s e f u l s t r a t e g y i n d e a l i n g w i t h s t r e s s . I t i s p o s s i b l e t h a t c o n f r o n t i v e c o p i n g may have been used t o reduce d i s t r e s s by i n c r e a s i n g u n d e r s t a n d i n g and g a i n i n g a sense of c o n t r o l . S u b j e c t s made moderate use of p r o b l e m - s o l v i n g s t r a t e g i e s as e v i d e n c e d by t h e i r use of s e l f - r e l i a n t and c o n f r o n t i v e c o p i n g . T h i s f i n d i n g s u p p o r t s t h e White e t a l . (1990) s t u d y f o r p a t i e n t s w i t h i n t h e f i r s t s i x months of t r a n s p l a n t a t i o n . A l t h o u g h White and c o l l e a g u e s d i d not use t h e r e v i s e d JCS, c o p i n g was c o n c e p t u a l i z e d i n t o 10 r a t i o n a l l y c o n s t r u c t e d s u b s c a l e s . T h e i r f i n d i n g s i n d i c a t e d t h a t t h e h i g h e s t s c o r i n g s t r a t e g i e s were on t h e d i s t a n c i n g / d e t a c h m e n t s c a l e ; and s i m i l a r t o t h i s s t u d y , moderate use o f s t r a t e g i e s on t h e s e l f - c o n t r o l / a c c e p t i n g r e s p o n s i b i l i t y , p r o b l e m - s o l v i n g , and c o n f r o n t i v e c o p i n g s c a l e s . F o r t h e p a t i e n t s i n t h i s s t u d y , t h e i r c h o i c e o f c o n f r o n t i v e and s e l f - r e l i a n t c o p i n g may i n d i c a t e t h a t w h i l e some a s p e c t s o f l i v i n g w i t h a k i d n e y t r a n s p l a n t a r e amenable t o r a t i o n a l p roblem-s o l v i n g , o t h e r a s p e c t s of s u b j e c t s ' t r a n s p l a n t s i t u a t i o n may have been p e r c e i v e d as unchangeable. I t may be t h a t t h e use o f s o c i a l r e s o u r c e s a l s o h e l p s a p e r s o n m a i n t a i n a p o s i t i v e o u t l o o k i f , t h e i n d i v i d u a l b e l i e v e s t h a t one can r e c e i v e t h e s u p p o r t t h a t i s needed. G a l and L a z a r u s (1975) n o t e t h a t t a k i n g d i r e c t a c t i o n d u r i n g s t r e s s i s an e f f i c a c i o u s c o p i n g t o o l because i t f o s t e r s a sense of m a s t e r y and c o n t r o l o v e r t h e s i t u a t i o n . C a s s i l e t h e t a l . , (1980) found t h a t becoming w e l l i n f o r m e d may e n a b l e p a t i e n t s t o m a i n t a i n hope by f r e e i n g them from a n x i e t y and f e a r w h i c h may e x p l a i n a moderate use of c o n f r o n t i v e c o p i n g i n t h i s group of p a t i e n t s . Folkman and L a z a r u s (1988) found t h a t p l a n f u l p r o b l e m - s o l v i n g a c t e d as a s t r o n g e l i c i t o r o f i n f o r m a t i o n a l , e m o t i o n a l , and t a n g i b l e s u p p o r t . As s u c h , s u p p o r t a n t c o p i n g may o v e r l a p o r c o u l d have been an i m p o r t a n t i n f l u e n c e on t h e o t h e r t y p e s o f c o p i n g an i n d i v i d u a l u s e s . A p o t e n t i a l s o u r c e o f b i a s i n t h i s r e s e a r c h a r i s e s from t h e f a c t t h a t t h e p a t i e n t s s t u d i e d r e c e i v e d t h e i r f o l l o w - u p c a r e i n an a m b u l a t o r y c l i n i c i n a major t e a c h i n g h o s p i t a l . The s e t t i n g i t s e l f may have a l s o encouraged p r e f e r e n c e s f o r i n f o r m a t i o n , and p a t i e n t s who seek f o l l o w - u p i n l a r g e m e d i c a l c e n t r e s may d i f f e r from t h o s e who go e l s e w h e r e f o r f o l l o w - u p . Support networks a l s o r e f e r t o a s e t o f p e r s o n a l c o n t a c t s t h r o u g h w h i c h i n d i v i d u a l s r e c e i v e e m o t i o n a l s u p p o r t , m e d i c a l c a r e , and a sense of s e r v i c e and i n f o r m a t i o n . W h i l e p a t i e n t s d i d 105 make use of a v a r i e t y o f s o c i a l s u p p o r t s , i t i s i n t e r e s t i n g t o note t h a t t a l k i n g w i t h p r o f e s s i o n a l s was one of t h e l e a s t used s t r a t e g i e s among t h e s u p p o r t a n t c o p i n g i t e m s . L e s s f r e q u e n t m o n i t o r i n g o f t h e p a t i e n t ' s c o n d i t i o n i s r e q u i r e d as t i m e p r o g r e s s e s . Thus, i t makes sense t h a t p a t i e n t s would seek s u p p o r t from s o u r c e s o t h e r t h a n t h o s e i n a p r o f e s s i o n a l network c o n s i d e r i n g t h e i r f o l l o w - u p and i n t e r a c t i o n w i t h h e a l t h c a r e p r o f e s s i o n a l s i s not as f r e q u e n t as f o r t h o s e who a r e more r e c e n t t r a n s p l a n t e d r e c i p i e n t s . The s u b t l e , more s e l e c t i v e m a n i f e s t a t i o n s o f d e n i a l and m i n i m i z a t i o n seemed t o have h e l p e d p a t i e n t s when t h e y used p a l l i a t i v e and e v a s i v e c o p i n g . I t may w e l l be n e c e s s a r y f o r p a t i e n t s t o put t h e d i s e a s e out of mind most of t h e t i m e , b u t a t t h e same t i m e be s u f f i c i e n t l y aware of t h e r e a l i t i e s o f t h e s i t u a t i o n t o c o n t i n u e w i t h a p p r o p r i a t e f o l l o w - u p e v e n t s a s s o c i a t e d w i t h t h e i r k i d n e y t r a n s p l a n t i n o r d e r t o l i v e and f u n c t i o n w i t h t h e p r o g r e s s i o n o f d i s e a s e . O ther forms of p a l l i a t i v e c o p i n g such as d r i n k i n g and smoking were among t h e l e a s t used s t r a t e g i e s by t h e s u b j e c t s i n t h i s s t u d y . The low r a n k i n g o f t h e s e methods was a l s o s u p p o r t e d by t h e B a l d r e e and c o l l e a g u e s (1982) s t u d y . W h i l e such a v o i d a n t t e c h n i q u e s may p r o v i d e a b r i e f but temporary r e s p i t e from d i s t r e s s , t h e y seem l e s s l i k e l y t h a n o t h e r s t o produce a b e n e f i c i a l e f f e c t . One may s p e c u l a t e t h a t t h e r e p o r t e d low f r e q u e n c y o f u s i n g d r i n k i n g and smoking may a l s o r e p r e s e n t s o c i a l l y l e s s d e s i r a b l e ways of c o p i n g w i t h s t r e s s because such methods would be s t r o n g l y d i s c o u r a g e d by h e a l t h c a r e \ 106 professionals involved i n caring for kidney transplant patients. It i s i n t e r e s t i n g to note that the coping item which involved prayer or putting t r u s t i n God was not highly ranked by the subjects i n t h i s study. This finding i s not consistent with other studies of transplant and d i a l y s i s patients (Sutton & Murphy, 1989; Baldree et a l . , 1982; Gurklis & Menke, 1988; Ei c h e l , 1988). For some indi v i d u a l s , hope has i t s roots i n f a i t h i n God. It i s possible that methods of coping, such as praying or putting one's t r u s t i n God are not t y p i c a l of long-term kidney transplant patients' ways of coping. Hope i s a "multidimensional dynamic l i f e force characterized by a confident yet uncertain expectation of achieving a future good, which to the hoping person i s r e a l i s t i c a l l y possible and personally s i g n i f i c a n t " (Dufault & Martocchio, 1985, p. 380). Based on t h i s d e f i n i t i o n , i t would seem that hope arises from d i f f e r e n t sources, therefore i t i s reasonable to expect that patients i n t h i s study found that support networks, such as relationships with family and friends, more hel p f u l than support from r e l i g i o u s or s p i r i t u a l sources. Although evasive, f a t a l i s t i c , and emotive coping were used less than others, there were individuals who used them. Among the lowest ranking items were "t o l d yourself that the problem was someone else's f a u l t " (evasive) and "blaming yourself for getting into such a s i t u a t i o n " ( f a t a l i s t i c ) . A possible explanation for t h i s could be that blaming others for one's s i t u a t i o n represents a s o c i a l l y less acceptable way of dealing with s t r e s s . Although ESRD has many i d e n t i f i a b l e causes, few are a t t r i b u t a b l e to other people, except through predisposition by genetic mechanisms or 107 f a m i l y h i s t o r y , hence blame i s not as l i k e l y t o o c c u r . F o r some, i t may be t h a t emotive c o p i n g can s e r v e a u s e f u l purpose i n t h e c o p i n g scheme because i t a l l o w s t h e p e r s o n t o v e n t some d i s t r e s s g e n e r a t e d by t h e s i t u a t i o n so as t o e n a b l e one t o c o n t i n u e t o f u n c t i o n . I t i s a l s o p o s s i b l e t h a t some p e o p l e may f e e l t h e need t o engage i n b e h a v i o u r s such as w o r r y o r s e l f - b l a m e i n o r d e r t o make t h e m s e l v e s f e e l worse b e f o r e t h e y can f e e l b e t t e r . C o n s i d e r i n g t h a t o p t i m i s t i c c o p i n g was t h e c o p i n g s t y l e most f r e q u e n t l y used, and t h a t a c c o r d i n g t o J a l o w i e c ( 1 9 8 5 ) , f a t a l i s t i c c o p i n g d e s c r i b e s e f f o r t s t h a t a r e i n a sense q u i t e t h e o p p o s i t e t o o p t i m i s t i c c o p i n g , i t makes sense t h a t f a t a l i s t i c c o p i n g was one o f t h e l e a s t used modes o f c o p i n g . However, t h e r e were s u b j e c t s who used f a t a l i s t i c c o p i n g . A c c o r d i n g t o a p p r a i s a l t h e o r y , t h e way a p e r s o n a p p r a i s e s an e n c o u n t e r s t r o n g l y i n f l u e n c e s t h e k i n d s o f c o p i n g s t r a t e g i e s t h a t w i l l be used t o manage t h e demands of t h e e n c o u n t e r ( L a z a r u s & Folkman, 1984). I n a t h r e a t e n i n g o r h a r m f u l s i t u a t i o n t h a t i s a p p r a i s e d as h o l d i n g few p o s s i b i l i t i e s f o r b e n e f i c i a l change, L a z a r u s and Folkman p r e d i c t t h a t t h e p e r s o n w i l l employ e m o t i o n - f o c u s e d modes of c o p i n g . On t h e o t h e r hand, when a s i t u a t i o n i s a p p r a i s e d as h a v i n g t h e p o t e n t i a l f o r a m e l i o r a t i o n by a c t i o n , t h e p e r s o n w i l l use p r o b l e m - f o c u s e d c o p i n g t o a l t e r t h e t r o u b l e d s i t u a t i o n t h a t p roduced d i s t r e s s . U s i n g t h i s t h e o r y , t h i s r e s e a r c h e r proposes an a l t e r n a t i v e i n t e r p r e t a t i o n of f a t a l i s t i c c o p i n g . F o r some i n d i v i d u a l s , f a t a l i s t i c c o p i n g e f f o r t s c o u l d be used t o p e r p e t u a t e a p e s s i m i s t i c o r h o p e l e s s p e r s p e c t i v e . F o r o t h e r s , i t c o u l d a l s o 108 d e s c r i b e r e a l i t y - b a s e d e f f o r t s t h a t c o u l d promote t h e p o s s i b i l i t y o f hope. T h i s a l t e r n a t i v e a n a l y s i s o f f a t a l i s t i c c o p i n g may e x p l a i n why i t was used by some s u b j e c t s . I t may be p o s s i b l e t h a t t h o s e who found f a t a l i s t i c c o p i n g h e l p f u l were u s i n g hope maintenance t o c r e a t e a more c e r t a i n immediate environment and f u t u r e . T h i s d e s c r i p t i o n i s s i m i l a r t o t h e c o n c e p t o f tempered hope as d e s c r i b e d by Weems and P a t t e r s o n (1989) i n t h e i r s t u d y o f a d u l t p a t i e n t s who were a w a i t i n g a c a d a v e r i c k i d n e y t r a n s p l a n t . As t o p r o t e c t o n e s e l f from d i s a p p o i n t m e n t , t h e h o p i n g p e r s o n c o u l d a c c e p t t h e s i t u a t i o n because h i s o r h e r a p p r a i s a l o f t h e s i t u a t i o n was such t h a t v e r y l i t t l e c o u l d be done. T h i s may be i n t e r p r e t e d t o mean t h a t a p e r s o n tempers h i s o r h e r hope w i t h t h e knowledge o f t h e r e a l i t y o f t h e s i t u a t i o n . I t may a l s o be p o s s i b l e t h a t by m a i n t a i n i n g a h o p e l e s s p e r s p e c t i v e , t h e p e r s o n i s n ot c r e a t i n g an e a r l y o p p o r t u n i t y f o r d i s a p p o i n t m e n t . L a z a r u s and Folkman (1984) a l s o note t h a t a p p r a i s a l s o f p e r s o n - e n v i r o n m e n t r e l a t i o n s h i p s a r e i n f l u e n c e d by p e r s o n c h a r a c t e r i s t i c s such as m o t i v a t i o n a l p a t t e r n s ( e . g . v a l u e s , commitments, and g o a l s ) , b e l i e f s about o n e s e l f and t h e w o r l d , and r e c o g n i t i o n o f p e r s o n a l r e s o u r c e s f o r c o p i n g such as f i n a n c i a l means, s o c i a l and p r o b l e m - s o l v i n g s k i l l s , and h e a l t h and energy. I n d i v i d u a l d i f f e r e n c e s i n t h e s e v a r i a b l e s may a l s o h e l p t o e x p l a i n why an e n c o u n t e r c o u l d be a p p r a i s e d as a t h r e a t by one p e r s o n and as a c h a l l e n g e by a n o t h e r p e r s o n . The f i n d i n g s o f t h i s s t u d y demonstrate t h a t t h e s u b j e c t s used a wide range of c o p i n g s t r a t e g i e s t o d e a l w i t h t h e g e n e r a l s t r e s s o f l i v i n g w i t h a l o n g - t e r m k i d n e y t r a n s p l a n t . The i t e m means on t h e JCS f o r t h i s group of p a t i e n t s can be r e v i e w e d i n Appendix R. There were e i g h t c o p i n g items t h a t were most f r e q u e n t l y used: k e e p i n g l i f e as normal as p o s s i b l e and n o t l e t t i n g t h e problem i n t e r f e r e ; t h i n k i n g p o s i t i v e l y ; k e e p i n g a sense o f humour; t h i n k i n g about t h e good t h i n g s i n l i f e ; f i n d i n g out more about t h e problem; h a n d l i n g t h i n g s one s t e p a t a t i m e ; l o o k i n g a t t h e problem o b j e c t i v e l y ; s e e i n g t h e good s i d e o f t h e s i t u a t i o n . S i n c e t h e m a j o r i t y o f t h e s e c o p i n g i t e m s f a l l under o p t i m i s t i c and c o n f r o n t i v e c o p i n g , h i g h e r s c o r e s on t h e s e i t e m s d e m o n s t r a t e t h a t p a t i e n t s seem t o c o n c e n t r a t e on t h e elements of p o s i t i v e t h i n k i n g and c o n s t r u c t i v e p r o b l e m - s o l v i n g when c o p i n g w i t h s t r e s s . J a l o w i e c and Powers (1981) a l s o found t h a t p a t i e n t s s h a r e d a s t r o n g sense of hope wh i c h was s i m i l a r t o t h e f i n d i n g s i n t h i s s t u d y . I t i s p o s s i b l e t h a t t h i s f i n d i n g may d e m o n s t r a t e t h a t b o t h c h r o n i c and a c u t e l y i l l p a t i e n t s c o n c e n t r a t e on t h e e lements of hope, c o n t r o l , and c o n s t r u c t i v e p r o b l e m - s o l v i n g i n c o p i n g w i t h s t r e s s . A n o t h e r p o s s i b l e e x p l a n a t i o n f o r h i g h e r s c o r e s on t h e s e items s u g g e s t s t h a t t h e use o f a c t i v e s t r a t e g i e s may i n d i c a t e a d e s i r e by p a t i e n t s t o remain i n c o n t r o l and d e a l d i r e c t l y and a c t i v e l y w i t h t h e i r s t r e s s g e n e r a t e d by u n c e r t a i n t y . The f i n d i n g s o f t h e p r e s e n t s t u d y s u p p o r t t h e s t r e s s and c o p i n g t h e o r y t h a t p r e d i c t s i n s t r e s s f u l s i t u a t i o n s , p e o p l e t y p i c a l l y use b o t h p r o b l e m - f o c u s e d and e m o t i o n - f o c u s e d modes of c o p i n g . P r o b l e m - f o c u s e d c o p i n g i s d i r e c t e d a t managing o r a l t e r i n g t h e problem c a u s i n g t h e d i s t r e s s and e m o t i o n - f o c u s e d c o p i n g i s d i r e c t e d a t r e g u l a t i n g e m o t i o n a l r e s p o n s e t o t h e p r o b l e m (Folkman & L a z a r u s , 1984). T h i s e i g h t f a c t o r s t r u c t u r e 110 i n d i c a t e s t h a t e v a s i v e , emotive and p a l l i a t i v e c o p i n g f a l l w i t h i n t h e e m o t i o n - f o c u s e d c a t e g o r y ; c o n f r o n t i v e c o p i n g f a l l s w i t h i n t h e p r o b l e m - f o c u s e d c a t e g o r y ; and o p t i m i s t i c , f a t a l i s t i c , s u p p o r t a n t , and s e l f - r e l i a n t c o p i n g a r e a mix o f emotion- and p r o b l e m - f o c u s e d s t r a t e g i e s . E m o t i o n - f o c u s e d c o p i n g c o n t a i n s numerous s p e c i f i c c o p i n g s t r a t e g i e s such as k e e p i n g a sense of humour, a v o i d a n c e , w i s h f u l t h i n k i n g , assignment o f blame t o s e l f and o t h e r s , f a t a l i s m , and d i s t a n c i n g . S p e c i f i c s t r a t e g i e s t o p r o b l e m - f o c u s e d c o p i n g i n c l u d e t a k i n g d i r e c t a c t i o n , c o n f r o n t i n g t h e pro b l e m , and s e e k i n g i n f o r m a t i o n . F i n d i n g s from o t h e r s i t u a t i o n - o r i e n t e d s t u d i e s o f c o p i n g w i t h i l l n e s s i n d i c a t e t h a t w h i l e e m o t i o n - f o c u s e d c o p i n g was p a r t i c u l a r l y f r e q u e n t i n h e a l t h - r e l a t e d s t r e s s f u l s i t u a t i o n s , p r o b l e m - f o c u s e d c o p i n g was a l s o used i n t h e s e s i t u a t i o n s (Cohen & L a z a r u s , 1979; Moos, 1977; Moos & Tsu, 1977). However, i n c o p i n g s t u d i e s o f t r a n s p l a n t and d i a l y s i s p o p u l a t i o n s , an emphasis on p r o b l e m - o r i e n t e d c o p i n g methods was found ( S u t t o n & Murphy, 1989; B a l d r e e e t a l . , 1982; G u r k l i s & Menke, 1988; E i c h e l , 1988). T h i s sample p l a c e d more emphasis on s o l v i n g t h e problem o r h a n d l i n g t h e s i t u a t i o n as i n d i c t e d by t h e moderate use o f c o n f r o n t i v e , o p t i m i s t i c and s e l f - r e l i a n t c o p i n g t o manage s t r e s s . The g e n e r a l t e n d e n c y t o use p r o b l e m - o r i e n t e d c o p i n g methods was a l s o found i n t h e J a l o w i e c and Powers (1981) s t u d y of s t r e s s and c o p i n g i n h y p e r t e n s i v e and emergency room p a t i e n t s and f o r spouses o f CAPD p a t i e n t s ( S r i v a s t a v a , 1988). The f i n d i n g t h a t items on t h e o p t i m i s t i c , s e l f - r e l i a n t , and c o n f r o n t i v e c o p i n g s u b s c a l e s were t h e most f r e q u e n t l y used I l l s u g g e s t s t h a t t h i s sample a l s o used e m o t i o n - f o c u s e d c o p i n g when d e a l i n g w i t h t h e t r a n s p l a n t s i t u a t i o n . T h i s f i n d i n g s u p p o r t s t h e s t r e s s and c o p i n g t h e o r y i n t h a t p a t i e n t s used b o t h modes of c o p i n g t o d e a l w i t h t h e demands posed by a r e a l - l i f e s t r e s s f u l s i t u a t i o n . T h i s f i n d i n g i s a l s o c o n s i s t e n t w i t h t h e f i n d i n g s o f Folkman and L a z a r u s (1980) middle-aged community sample where b o t h forms of c o p i n g were used. Folkman and L a z a r u s (1980) contend t h a t t h e r e l a t i v e predominance of problem- and e m o t i o n - o r i e n t e d c o p i n g s t r a t e g i e s depends on t h e a p p r a i s a l of t h e s i t u a t i o n . P r o b l e m - o r i e n t e d forms o f c o p i n g i n c r e a s e i n s i t u a t i o n s a p p r a i s e d as c h a n g e a b l e and e m o t i o n - o r i e n t e d c o p i n g i s h e i g h t e n e d i n s i t u a t i o n s p e r c e i v e d as not amenable t o change. A p o s s i b l e e x p l a n a t i o n as t o why l o n g e r - t e r m k i d n e y r e c i p i e n t s seem t o p r e f e r p r o b l e m - o r i e n t e d c o p i n g may be r e l a t e d t o t h e i r f e e l i n g s t h a t t h e y have more c o n t r o l o v e r f a c t o r s a f f e c t i n g t h e s u c c e s s f u l outcome of t h e i r t r a n s p l a n t . I t i s a l s o p o s s i b l e t h a t as p a t i e n t s l e a r n t o l i v e w i t h t h e i r t r a n s p l a n t o v e r th e y e a r s , t h e y may r e p l a c e emotion f o c u s e d c o n c e r n s a s s o c i a t e d w i t h t r a n s p l a n t a t i o n w i t h p r o b l e m f o c u s e d c o n c e r n s h a v i n g t o do w i t h ESRD and t r a n s p l a n t a t i o n such as t r e a t m e n t programs, accommodating t o t h e l i m i t a t i o n s imposed by t h e r a p y and t r e a t m e n t , and g e t t i n g on w i t h one's l i f e . I t i s i n t e r e s t i n g t o note t h a t some of t h e i t e m s t h a t were d e l e t e d from t h e o r i g i n a l i n s t r u m e n t ( J a l o w i e c , 1988) were r e p o r t e d by some p a t i e n t s as a d d i t i o n a l ways of c o p i n g w i t h t h e i r t r a n s p l a n t s i t u a t i o n . These items i n c l u d e d : "Cry" and " S i n k i n t o d e p r e s s i o n . " A l t h o u g h t h e s e ways of c o p i n g appeared t o be u s e f u l 112 and e f f e c t i v e i n c o p i n g w i t h t h e s t r e s s i n t h i s s i t u a t i o n , t h e y were o n l y mentioned by two p a t i e n t s . Some o f t h e a d d i t i o n a l ways o f c o p i n g add t o t h e e x i s t i n g 60 ite m s on t h e s c a l e . Responses can be d e s c r i b e d as f a l l i n g i n t o t h r e e c a t e g o r i e s . The f i r s t two c a t e g o r i e s a r e s i m i l a r t o t h o s e found i n a s t u d y of spouses o f persons on CAPD ( S r i v a s t a v a , 1988). The f i r s t s e t o f responses w h i c h b e l o n g t o t h e 'engage i n o t h e r a c t i v i t i e s ' c a t e g o r y , p a t i e n t s i n t h i s s t u d y f o c u s e d on th e m s e l v e s as a way o f handing p e r c e i v e d demands. T h e i r f o c u s was t h r o u g h making e f f o r t s t o change t h e d a i l y r o u t i n e and k e e p i n g busy u s i n g d i s t r a c t i o n s such as t e l e v i s i o n . The c a t e g o r y of ' m a i n t a i n i n g a p o s i t i v e view' was r e f l e c t e d i n r e s p o n s e s i n w h i c h p a t i e n t s a c c e p t e d t h e l i m i t a t i o n s o f ESRD and t r a n s p l a n t a t i o n where t h e y r e d e f i n e d t h e i r p r i o r i t i e s . F i n a l l y , i n t h e t h i r d c a t e g o r y , some p a t i e n t s a r t i c u l a t e d s p e c i f i c b e h a v i o u r s r e l a t e d t o t r a n s p l a n t a t i o n w h i c h i n c l u d e d : f o l l o w t h e t r e a t m e n t , t r u s t k i d n e y f u n c t i o n and m e d i c a t i o n s , and a v o i d t a l k i n g t o f e l l o w t r a n s p l a n t p a t i e n t s . A l o n g w i t h t h e i r r e s p o n s e s , some p a t i e n t s ' q u a l i t a t i v e a d d i t i o n s t o t h e i n s t r u m e n t i l l u s t r a t e d t h e i r p o i n t s o f view. F o r example, one p a t i e n t used m a r i j u a n a ; he c o n s i d e r e d " t a k i n g m e d i c a t i o n s " t o mean drugs a s s o c i a t e d w i t h m a i n t a i n i n g h i s k i d n e y t r a n s p l a n t . A n o t h e r p a t i e n t s t a t e d h er r e a s o n s f o r a v o i d i n g o t h e r t r a n s p l a n t p a t i e n t s : " A f t e r 10 y e a r s , I f e e l t h a t my t r a n s p l a n t has been v e r y s u c c e s s f u l . To t a l k w i t h f e l l o w p a t i e n t s makes me f e e l d e p r e s s e d o r g u i l t y because mine i s w o r k i n g w e l l a t t h i s p o i n t , and maybe t h e t r a n s p l a n t o t h e r s have 113 may n o t . " The r e v i s e d JCS i n s t r u m e n t had an i n t e r n a l c o n s i s t e n c y a l p h a c o e f f i c i e n t o f .97 f o r t h e use s c a l e and .96 f o r t h e e f f e c t i v e n e s s s c a l e i n d i c a t i n g h i g h r e l i a b i l i t y . The e i g h t f a c t o r s had i n t e r n a l c o n s i s t e n c i e s r a n g i n g from .73 t o .89 on t h e use s c a l e and .54 t o .87 on t h e e f f e c t i v e n e s s s c a l e . A c c o r d i n g t o t h e a l p h a r e l i a b i l i t i e s , t h e p a l l i a t i v e e f f e c t i v e n e s s s u b s c a l e was not s a t i s f a c t o r y w i t h an a l p h a o f .62. The p s y c h o m e t r i c d a t a i n t h i s s t u d y p a r t i a l l y s u p p o r t s d a t a r e p o r t e d by H e a r t h (1988) and J a l o w i e c (1989). Data from t h e s e s t u d i e s d i d not s u p p o r t b o t h p a l l i a t i v e s u b s c a l e s . I n t h i s s t u d y , f a t a l i s t i c c o p i n g was th e f a c t o r w i t h t h e l o w e s t a l p h a and c o n s i s t e d o f 4 i t e m s . I t i s p o s s i b l e t h a t t h e lo w e r a l p h a r e f l e c t s t h e s m a l l e r number o f it e m s on t h i s f a c t o r . I t i s d i f f i c u l t t o know whether i t i s p o s s i b l e t o a d e q u a t e l y measure t h i s s t y l e o f c o p i n g w i t h so few i t e m s . I n a d d i t i o n , t h e ambiguous i n t e r p r e t a t i o n o f t h e i t e m s on t h e p a l l i a t i v e s u b s c a l e may i n d i c a t e t h a t t h i s f a c t o r i s t a p p i n g i n t o o t h e r t h i n g s . How a p a r t i c u l a r i t e m on t h e c o p i n g s c a l e i s i n t e r p r e t e d by s u b j e c t s i s a l s o a c r i t i c a l f a c t o r f o r t h e u n d e r s t a n d i n g o f c o p i n g i n any g i v e n p o p u l a t i o n . A l o n g w i t h t h e i r r e s p o n s e s , some s u b j e c t s i n t h i s s t u d y i d e n t i f i e d d i f f i c u l t i e s t h a t t h e y e n c o u n t e r e d w i t h some i t e m s . The term ' m e d i c a t i o n s ' was c o n s i d e r e d ambiguous because i t was not c l e a r whether m e d i c a t i o n s r e l a t e d t o o v e r - t h e - c o u n t e r p r e p a r a t i o n s , i l l e g a l d r u g s , m e d i c a t i o n s f o r c o n d i t i o n s o t h e r t h a n r e n a l d i s e a s e , o r immunosuppressive t h e r a p y used as a p a r t o f m a i n t a i n i n g g r a f t f u n c t i o n . I n a d d i t i o n , many p a r t i c i p a n t s gave a s c o r e o f '0' on c o p i n g i t e m s w h i c h t h e y thought c o n t a i n e d two d i f f e r e n t a c t i o n s . The c o p i n g s c a l e c o n t a i n e d items such a s : "Ate o r smoked more t h a n u s u a l " ( p a l l i a t i v e ) ; " D i d something i m p u l s i v e o r r i s k y ( e m o t i v e ) ; " T r i e d t o i g n o r e o r a v o i d t h e problem" ( e v a s i v e ) . As mentioned p r e v i o u s l y , a s c o r e o f 0 ( i n d i c a t i n g n ever used) on t h e s e i t e m s c o u l d have been because s u b j e c t s p e r c e i v e d t h e s e as a s o c i a l l y u n a c c e p t a b l e methods o f c o p i n g w i t h s t r e s s . I n a d d i t i o n , problems p e r t a i n i n g t o meaning, e s p e c i a l l y i n lang u a g e , may have c o n t r i b u t e d t o t h e low s c o r i n g o f t h e s e i t e m s and may a l s o have a f f e c t e d t h e r e c o g n i t i o n o f such c o p i n g s t r a t e g i e s . As L a z a r u s and Folkman (1984) s u g g e s t , c o p i n g i s s i t u a t i o n s p e c i f i c . W h i l e t h i s i n s t r u m e n t was d e v e l o p e d from a f a c t o r a n a l y s i s o f c o p i n g r e s p o n s e s t o many d i f f e r e n t s t r e s s o r s , and may be c o n s i d e r e d a v a l i d measure of c o p i n g , i t may however have a s p e c t s t h a t a r e not a p p l i c a b l e f o r p a t i e n t s i n a l o n g - t e r m k i d n e y t r a n s p l a n t s i t u a t i o n . The p r o b l e m - f o c u s e d forms o f c o p i n g t h a t a r e a p p l i c a b l e f o r t h i s sample of p a t i e n t s seem r e l a t i v e l y l i m i t e d compared t o t h e e m o t i o n - f o c u s e d s t r a t e g i e s c o n t a i n e d i n t h e i n s t r u m e n t . T h i s may be a f u n c t i o n of t h e r e s e a r c h domain and t e s t c o n s t r u c t i o n ; items were f o r m u l a t e d a c r o s s many p a t i e n t s i t u a t i o n s . Thus, t h e d e f i n i t i o n o f p r o b l e m - f o c u s e d c o p i n g i s t o a c e r t a i n e x t e n t dependent on t h e t y p e o f problem under s t u d y . N e v e r t h e l e s s , t h e c o p i n g s c a l e r e p r e s e n t s an e f f o r t t o a s s e s s t h e use o f b o t h forms o f c o p i n g . I n summary, because l i v i n g w i t h a k i d n e y t r a n s p l a n t can be r e g a r d e d as a s t r e s s f u l e x p e r i e n c e , t h e s t r e s s and c o p i n g t h e o r y o f L a z a r u s and a s s o c i a t e s ( G a l & L a z a r u s , 1975; Cohen & L a z a r u s , 1979; L a z a r u s & Folkman, 1984; Folkman & L a z a r u s , 1988) h e l p e d t o e x p l a i n p o s s i b l e r e a s o n s f o r t h e v a r i a b i l i t y i n use o f c o p i n g methods f o r p a t i e n t s i n a l o n g - t e r m t r a n s p l a n t s i t u a t i o n . The f i n d i n g s d e m o n s t r a t e d t h a t t h i s sample used a wide range of c o p i n g s t r a t e g i e s . The p a t i e n t s seemed t o p r e f e r t o use o p t i m i s t i c , s e l f - r e l i a n t and c o n f r o n t i v e c o p i n g and h i g h e r s c o r e s on t h e s e f a c t o r s may i n d i c a t e t h a t p a t i e n t s c o n c e n t r a t e d on t h e e lements of p o s i t i v e t h i n k i n g , c o n s t r u c t i v e p r o b l e m - s o l v i n g , and hope when t h e y coped w i t h s t r e s s . T h i s may a l s o i n d i c a t e a d e s i r e by p a t i e n t s t o remain i n c o n t r o l and d e a l d i r e c t l y and a c t i v e l y w i t h t h e i r s t r e s s . The g e n e r a l t e ndency t o use problem o r i e n t e d c o p i n g methods was s u p p o r t e d by o t h e r s t u d i e s o f t r a n s p l a n t a t i o n and d i a l y s i s . U s i n g p r o b l e m - o r i e n t e d c o p i n g may i n d i c a t e t h a t p a t i e n t s have more c o n t r o l o v e r t h e f a c t o r s a f f e c t i n g t h e s u c c e s s f u l outcome of t h e i r t r a n s p l a n t e x p e r i e n c e . R e l a t i o n s h i p Between U n c e r t a i n t y and C o pinq S t r a t e g i e s S i g n i f i c a n t c o r r e l a t i o n s were found between p e r c e p t i o n s o f u n c e r t a i n t y and c o p i n g s t y l e s . S p e c i f i c a l l y , s i g n i f i c a n t p o s i t i v e c o r r e l a t i o n s were found between u n c e r t a i n t y and t h e use o f e v a s i v e , f a t a l i s t i c , and emotive c o p i n g . The t h e o r y o f a p p r a i s a l and c o p i n g can be used t o e x p l a i n t h e r e l a t i o n s h i p between u n c e r t a i n t y and c o p i n g s t r a t e g i e s . I n t h i s t h e o r y , L a z a r u s and Folkman (1984) e x p l a i n t h a t c o p i n g i s d e t e r m i n e d by c o g n i t i v e a p p r a i s a l where t h e a p p r a i s a l o f u n c e r t a i n t y i n f l u e n c e s t h e c o p i n g s t r a t e g i e s t h a t a r e used t o manage t h e demands of t h e s i t u a t i o n . The ways p e o p l e a c t u a l l y 116 cope a l s o depends h e a v i l y on t h e r e s o u r c e s t h a t a r e a v a i l a b l e t o them and t h e c o n s t r a i n t s t h a t i n h i b i t use o f t h e s e r e s o u r c e s i n th e c o n t e x t o f t h e s p e c i f i c e n c o u n t e r . U n c e r t a i n t y can c r e a t e demands t h a t o f t e n exceed t h e person's r e s o u r c e s . W h i l e i n many s i t u a t i o n s r e s o u r c e s can i n f a c t be adequate, b u t t h e p e r s o n does not use them t o t h e i r f u l l e s t because t o do so might c r e a t e a d d i t i o n a l c o n f l i c t and d i s t r e s s . I n t h i s s t u d y , more u n c e r t a i n t y was a s s o c i a t e d w i t h g r e a t e r use o f e v a s i v e , c o p i n g . T h i s may i n d i c a t e t h a t p a t i e n t s can a p p r e c i a t e t h e r e a l i t y of t h e s i t u a t i o n and a c t i v e l y choose t o a v o i d , m i n i m i z e , o r put t h a t r e a l i t y out o f mind i n o r d e r t o t o l e r a t e t h e p r e s e n t o r f u t u r e o f t h e i r d i s e a s e . I t may be t h a t as u n c e r t a i n t y i n c r e a s e d , t h e p e r s o n may have f e l t l e s s c o n t r o l o v e r t h e s i t u a t i o n and used a v o i d a n c e o r e v a s i v e a c t i v i t i e s i n o r d e r t o d e a l w i t h t h e s i t u a t i o n . T h i s i s s i m i l a r t o f i n d i n g s from l a b o r a t o r y s t u d i e s where under c o n d i t i o n s o f no c o n t r o l , s u b j e c t s were r e p o r t e d t o use p a l l i a t i v e ( e m o t i o n - f o c u s e d ) forms of c o p i n g , and appeared t o be e f f e c t i v e i n r e d u c i n g d i s t r e s s (Monat e t a l . , 1972). T h i s same argument c o u l d a l s o e x p l a i n t h e r e l a t i o n s h i p between u n c e r t a i n t y and f a t a l i s t i c c o p i n g . The d i r e c t i o n o f t h e r e l a t i o n s h i p s u g g e s t s t h a t u n c e r t a i n t y was a s s o c i a t e d w i t h g r e a t e r use o f f a t a l i s t i c c o p i n g . F a t a l i s t i c c o p i n g d e s c r i b e s t h e v e n t i n g and r e l e a s i n g o f n e g a t i v e emotions such as p e s s i m i s m , i n a d d i t i o n t o d i r e c t a c t i o n t h a t c o u l d be used t o c r e a t e a more c e r t a i n f u t u r e t h a t b u i l d s hope. P a t i e n t s w i t h h i g h and low l e v e l s o f u n c e r t a i n t y may be c o g n i z a n t o f t h e r e a l i t y o f t h e 117 s i t u a t i o n and a c c e p t t h a t n o t h i n g can be done w h i c h may e x p l a i n t h e i r use o f f a t a l i s t i c c o p i n g . That i s t o s a y , i f t h e s i t u a t i o n i s e v a l u a t e d as o f f e r i n g l i t t l e chance of hope, t h e n f a t a l i s t i c c o p i n g may be a h e l p f u l way of managing u n c e r t a i n t y . I n t h i s way i t may be t h a t p a t i e n t s may choose t o t o l e r a t e u n c e r t a i n t y and a c c e p t t h e u n p r e d i c t a b i l i t y and v u l n e r a b i l i t y a s s o c i a t e d w i t h t h e i r d i s e a s e . A n o t h e r p o s s i b i l i t y may be t h a t i n o r d e r t o p e r p e t u a t e f e e l i n g s o f hope, p a t i e n t s may need t o m a i n t a i n t h e i r u n c e r t a i n t y s t a t e . The g r e a t e r t h e l e v e l o f u n c e r t a i n t y , t h e more emotive c o p i n g was used. A g a i n , t h i s c o p i n g s t y l e f a l l s under t h e g e n e r a l r u b r i c of e m o t i o n - f o c u s e d c o p i n g . I t may be t h a t h i g h e r l e v e l s o f u n c e r t a i n t y i n t e r f e r e w i t h t h e p e r s o n ' s a b i l i t y t o form a c o g n i t i v e s t r u c t u r e w h i c h l i m i t s one's a b i l i t y t o a p p r a i s e t h e s i t u a t i o n . U n c e r t a i n t y dominates th e p e r c e p t u a l f i e l d when t h e f e a t u r e s o f an event a r e ambiguous o r complex, when t h e r e i s i n a d e q u a t e i n f o r m a t i o n , o r when t h e outcome i s u n c l e a r ( M i s h e l , 1981; 1984). I t may be more d i f f i c u l t t o use p r o b l e m - s o l v i n g methods i n t h e p r e s e n c e of u n c e r t a i n t y because a p p r a i s a l s o f t h e e v ent and r e s o u r c e a v a i l a b i l i t y f o r d e a l i n g w i t h i t becomes d i f f i c u l t o r i n a p p r o p r i a t e . I f t h e p e r s o n i s u n c l e a r o r c o n f u s e d , he o r she may f e e l l e s s c o n f i d e n t and e m o t i o n a l l y o v e r l o a d e d and l e s s c a p a b l e of d r a w i n g on c o p i n g r e s o u r c e s . T h e r e f o r e , i t i s p o s s i b l e t h a t as u n c e r t a i n t y i n c r e a s e s , p r o b l e m o r i e n t e d forms of c o p i n g may not be s u f f i c i e n t and t h e p e r s o n may need t o use e m o t i o n - f o c u s e d s t r a t e g i e s as w e l l i n o r d e r t o cope w i t h t h e s i t u a t i o n . 118 As L a z a r u s and Folkman (1984) p r e d i c t , s i t u a t i o n s t h a t had t o be a c c e p t e d , and i n which t h e p e r s o n had t o h o l d back from a c t i n g , g e n e r a t e d h i g h e r l e v e l s of e m o t i o n - f o c u s e d c o p i n g . I n t h i s s t u d y , i t appears t h a t h i g h e r l e v e l s o f u n c e r t a i n t y were a s s o c i a t e d w i t h e m o t i o n - f o c u s e d c o p i n g . A s i m i l a r f i n d i n g was a l s o r e p o r t e d i n a s t u d y by Webster and C h r i s t m a n (1988) where p o s t m y o c a r d i a l i n f a r c t i o n p a t i e n t s ' u n c e r t a i n t y was p o s i t i v e l y r e l a t e d t o a f f e c t i v e o r e m o t i o n - o r i e n t e d c o p i n g s t r a t e g i e s . That i s t o s a y , p a t i e n t s who p e r c e i v e d t h e i r i l l n e s s as h i g h l y vague o r u n c l e a r used a f f e c t i v e c o p i n g s t r a t e g i e s more f r e q u e n t l y (Webster & C h r i s t m a n , 1988). I t i s p o s s i b l e t h a t t h e ev e n t may be p e r c e i v e d as more t h r e a t e n i n g and c o p i n g r e s p o n s e s may t e n d t o f o c u s on d e a l i n g w i t h t h e e m o t i o n a l response t o t h r e a t r a t h e r t h a n t h e event ( M i s h e l , 1981). U s i n g e m o t i o n - f o c u s e d forms o f c o p i n g may a l s o r e p r e s e n t an e f f o r t t o a l l e v i a t e t h e d i s c o m f o r t a s s o c i a t e d w i t h h i g h l e v e l s o f e m o t i o n a l d i s t r e s s . I n a d d i t i o n , t h e r e was a p o s i t i v e a s s o c i a t i o n between u n c e r t a i n t y and use o f s e l f - r e l i a n t c o p i n g . The i n c r e a s e d use o f s e l f - r e l i a n t c o p i n g s t r a t e g i e s may be a f u n c t i o n o f t h e p e r c e i v e d a v a i l a b i l i t y o f r e s o u r c e s . I f t h e p e r s o n does not have a s t a b l e c o r e o f p e o p l e t o p r o v i d e c o n c r e t e s e r v i c e s and t a n g i b l e f u n c t i o n s , t h e n he o r she may f e e l i t i s more a p p r o p r i a t e t o s o l v e t h e problem independent o f h e l p from o t h e r s . An a l t e r n a t e r e a s o n f o r i n c r e a s e d s e l f - r e l i a n t c o p i n g may be due t o how a p e r s o n c o n s t r u e s s o c i a l s u p p o r t . L a z a r u s and Folkman (1984) e x p l a i n t h a t t h e p e r s o n may have a t h i s / h e r d i s p o s a l many forms of s o c i a l s u p p o r t . However, depending on how t h a t s o c i a l s u p p o r t 119 i s c o n s t r u e d , t h e p e r s o n may not be a b l e t o use i t . I t may be t h a t w i t h h i g h l e v e l s o f u n c e r t a i n t y , t h e p e r s o n may not be a b l e t o m o b i l i z e r e s o u r c e s . Or, as e x p l a i n e d p r e v i o u s l y , t h e p e r s o n may b e l i e v e t h a t by r e l y i n g on o n e s e l f r a t h e r t h a n o t h e r s i s a means o f i n c r e a s i n g one's sense o f c o n t r o l o v e r t h e s i t u a t i o n . I n summary t h e f i n d i n g s s u g g e s t e d t h a t i n t h i s h e a l t h r e l a t e d s i t u a t i o n , s e l e c t e d e m o t i o n - f o c u s e d forms o f c o p i n g were a s s o c i a t e d w i t h h i g h e r l e v e l s o f u n c e r t a i n t y . I n p a r t i c u l a r , e v a s i v e , f a t a l i s t i c , and emotive c o p i n g were a s s o c i a t e d w i t h u n c e r t a i n t y . I t may be t h a t h i g h e r l e v e l s o f u n c e r t a i n t y i n t e r f e r e d w i t h t h e person's a b i l i t y t o form a c o g n i t i v e s t r u c t u r e w h i c h l i m i t e d one's a b i l i t y t o a p p r a i s e t h e s i t u a t i o n and m o b i l i z e c o p i n g r e s o u r c e s . D i s c u s s i o n o f A n c i l l a r y F i n d i n g s I n t h e d i s c u s s i o n t o f o l l o w , f i n d i n g s i n a d d i t i o n t o t h e t h r e e r e s e a r c h q u e s t i o n s r e l a t e d t o u n c e r t a i n t y w i l l be d i s c u s s e d . These f i n d i n g s w i l l be d i s c u s s e d under two h e a d i n g s . Under t h e f i r s t h e a d i n g , f i n d i n g s r e l a t e d t o t h e l e v e l o f s u b j e c t s ' s t r e s s g e n e r a t e d by u n c e r t a i n t y w i l l be d i s c u s s e d . N ext, a d i s c u s s i o n r e l a t e d t o t h e f e e l i n g s g e n e r a t e d by u n c e r t a i n t y , t h a t i s , s u b j e c t s ' p e r c e p t i o n s o f t h r e a t and p o s i t i v e a s p e c t s ( o p p o r t u n i t y ) i n t h e i r u n c e r t a i n t y s t a t e w i l l f o l l o w . S t r e s s o f U n c e r t a i n t y The s u b j e c t s i n t h i s s t u d y p e r c e i v e d m o d e r a t e l y low l e v e l s o f s t r e s s g e n e r a t e d by t h e i r u n c e r t a i n t y w i t h a mean s c o r e o f 102.3. T h i s f i n d i n g can be compared w i t h F o r d (1989) who used an 120 e a r l i e r v e r s i o n o f t h e USS. F o r d found t h a t f i r s t t i m e b i o l o g i c a l c a r d i a c v a l v e p a t i e n t s a l s o p e r c e i v e d m o d e r a t e l y low l e v e l o f s t r e s s g e n e r a t e d by t h e u n c e r t a i n t y r e l a t e d t o t h e i r h e a r t v a l v e w i t h a mean s c o r e o f 77.5 ( 4 8 - i t e m v e r s i o n ) . Four s t u d i e s were found t h a t i d e n t i f i e d and q u a n t i f i e d s t r e s s o r s s p e c i f i c t o k i d n e y t r a n s p l a n t p a t i e n t s . A l t h o u g h t h e measures used i n t h e s e s t u d i e s d i f f e r e d from t h e i n s t r u m e n t used i n t h i s s t u d y , t h e f i n d i n g s o f t h e s e s t u d i e s can be i n c l u d e d h e r e as a c o m p a r i s o n . I n t h e f i r s t two s t u d i e s , Hayward e t a l . (1989) and F r e y (1990) b o t h i d e n t i f i e d t h e p o s s i b i l i t y o f r e j e c t i o n and u n c e r t a i n t y c o n c e r n i n g t h e f u t u r e as major s t r e s s o r s f o r newly t r a n s p l a n t e d p a t i e n t s . White and c o l l e a g u e s (1990) i d e n t i f i e d t h a t b e i n g u n c e r t a i n about whether t h e t r a n s p l a n t w i l l be a s u c c e s s was a c o n c e r n g e n e r a t i n g a g r e a t d e a l o f s t r e s s f o r a d u l t k i d n e y t r a n s p l a n t p a t i e n t s i n t h e f i r s t s i x months f o l l o w i n g t r a n s p l a n t a t i o n . F i n a l l y , S u t t o n and Murphy (1989) found t h a t f e a r o f k i d n e y r e j e c t i o n and u n c e r t a i n t y c o n c e r n i n g t h e f u t u r e were a l s o c o n s i d e r e d most s t r e s s f u l , even f o r p a t i e n t s who were t r a n s p l a n t e d l e s s t h a n f o u r y e a r s . O v e r a l l , t h e f i n d i n g s o f t h e s e s t u d i e s i n d i c a t e d a r a t h e r low l e v e l o f s t r e s s f o r k i d n e y t r a n s p l a n t p a t i e n t s , w h i c h i s s i m i l a r t o t h e f i n d i n g s o f t h i s s t u d y . Comparing t h e f i n d i n g s of t h i s s t u d y w i t h t h e f i n d i n g s o f o t h e r s t u d i e s , i t may t h e r e f o r e be r e a s o n a b l e t o e x p e c t t h a t u n c e r t a i n t y c o n c e r n i n g t h e f u t u r e and outcomes c o n c e r n i n g t r e a t m e n t a r e a r e a s t h a t have t h e p o t e n t i a l t o g e n e r a t e a g r e a t d e a l o f s t r e s s f o r k i d n e y t r a n s p l a n t p a t i e n t s . 121 F i n d i n g s o f t h i s s t u d y r e v e a l e d t h a t a s i g n i f i c a n t p o s i t i v e r e l a t i o n s h i p e x i s t e d between u n c e r t a i n t y and s t r e s s . A g a i n , u s i n g F o r d ' s (1989) s t u d y as a c o m p a r i s o n , a s i m i l a r a s s o c i a t i o n between u n c e r t a i n t y and s t r e s s was a l s o found. T h i s f i n d i n g i s not s u r p r i s i n g s i n c e i t i s r e a s o n a b l e t o e x p e c t t h a t t h e h i g h e r t h e l e v e l o f u n c e r t a i n t y , t h e h i g h e r t h e s u b j e c t s ' o v e r a l l p e r c e p t i o n s o f s t r e s s ( S u l s & M u l l e n , 1981). T h i s sample o f l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s was found t o e x p e r i e n c e m o d e r a t e l y low l e v e l s of u n c e r t a i n t y and m o d e r a t e l y low l e v e l s o f s t r e s s . M i s h e l (1984) a l s o found an a s s o c i a t i o n between u n c e r t a i n t y and s t r e s s i n p a t i e n t s h o s p i t a l i z e d f o r a m e d i c a l c o n d i t i o n . F o r t h e p a t i e n t s t h a t M i s h e l s t u d i e d , a s t r o n g r e l a t i o n s h i p between u n c e r t a i n t y and s t r e s s and s u g g e s t s t h a t i t i s vagueness, l a c k o f c l a r i t y , and l a c k o f i n f o r m a t i o n about an e v e n t t h a t a c c o u n t e d f o r an e v a l u a t i o n as s t r e s s f u l r a t h e r t h a n t h e e v e n t i t s e l f . F e e l i n g s G e n e r a t e d by U n c e r t a i n t y A c c o r d i n g t o t h e s t r e s s and c o p i n g t h e o r y , u n c e r t a i n t y r e s u l t s from c o g n i t i v e a p p r a i s a l s . The c o g n i t i v e a p p r a i s a l p r o c e s s d e t e r m i n e s whether t h e event i s p e r c e i v e d as s t r e s s f u l o r b e n i g n . I n t h i s s t u d y , l i v i n g w i t h a l o n g - t e r m k i d n e y t r a n s p l a n t was c h a r a c t e r i z e d by m o d e r a t e l y low l e v e l s o f s t r e s s . As t h i s t h e o r y p r e d i c t s , s t r e s s f u l a p p r a i s a l s i n c l u d e h a r m / l o s s , t h r e a t , and c h a l l e n g e ( o p p o r t u n i t y ) . T h r e a t concerns harms o r l o s s e s t h a t have not y e t t a k e n p l a c e but a r e a n t i c i p a t e d . As L a z a r u s and Folkman (1984) e x p l a i n , even when a h a rm/loss has o c c u r r e d , i t i s always f u s e d w i t h t h r e a t because e v e r y l o s s has t h e 122 p o t e n t i a l f o r n e g a t i v e i m p l i c a t i o n s f o r t h e f u t u r e . On t h e o t h e r hand, c h a l l e n g e a p p r a i s a l s f o c u s on t h e p o t e n t i a l f o r ma s t e r y o r growth and a r e more l i k e l y t o o c c u r when t h e p e r s o n has a sense of c o n t r o l o v e r t h e t r o u b l e d p erson-environment r e l a t i o n s h i p . The s u b j e c t s i n t h i s s t u d y had o v e r a l l low l e v e l s o f t h r e a t because o f t h e i r u n c e r t a i n t y w i t h a mean s c o r e o f 24.8. No s t u d i e s were found i n t h e l i t e r a t u r e t h a t a d d r e s s e d t h e v a l u e t h a t l o n g - t e r m k i d n e y p a t i e n t s ' p l a c e d on t h e i r u n c e r t a i n t y . However, s i m i l a r t o t h e f i n d i n g s o f t h i s s t u d y , t h e b i o l o g i c a l v a l v e p a t i e n t s i n Ford's (1989) s t u d y i n d i c a t e d t h a t p a t i e n t s a l s o p e r c e i v e d low l e v e l s o f t h r e a t (M = 22.3, SD = 25 . 7 ) . I n t h i s s t u d y , u n c e r t a i n t y was not a s s o c i a t e d w i t h t h r e a t and o p p o r t u n i t y whereas i n Ford's s t u d y , u n c e r t a i n t y was a s s o c i a t e d w i t h t h r e a t , b u t not o p p o r t u n i t y . The USS has a s e c t i o n w h i c h a s s e s s e s whether p e r c e p t i o n s o f u n c e r t a i n t y g e n e r a t e d p o s i t i v e f e e l i n g s . The f i n d i n g s i n d i c a t e t h a t t h e m a j o r i t y o f s u b j e c t s had p o s i t i v e f e e l i n g s because o f t h e i r u n c e r t a i n t y . The v a s t m a j o r i t y o f s u b j e c t s had o v e r a l l moderate t o h i g h l e v e l s of p o s i t i v e f e e l i n g s . However, some s u b j e c t s i n t h i s s t u d y d i d have low l e v e l s o f p o s i t i v e f e e l i n g s . U n c e r t a i n t y may have p o s i t i v e e f f e c t s when i t p e r m i t s r e a s s u r i n g i n t e r p r e t a t i o n o f cues ( M i s h e l , 1988). A l t h o u g h no s t u d i e s were found i n t h e l i t e r a t u r e t h a t e v a l u a t e d k i d n e y t r a n s p l a n t p a t i e n t s ' p o s i t i v e f e e l i n g s a s s o c i a t e d w i t h u n c e r t a i n t y , t h e p o t e n t i a l p o s i t i v e e f f e c t s o f u n c e r t a i n t y have been examined i n s t u d i e s o f c a n c e r p a t i e n t s . The f i n d i n g s from t h r e e s t u d i e s i n d i c a t e t h a t p o s i t i v e e f f e c t s , such as hope, were 123 r e l a t e d t o p a t i e n t s ' p e r c e p t i o n s o f u n c e r t a i n t y . C a s s i l e t h and c o l l e a g u e s (1980) found t h a t hope was p o s i t i v e l y r e l a t e d t o m e d i c a l s t a t u s and p r e f e r e n c e f o r a c t i v e i n v o l v e m e n t i n t r e a t m e n t . I n a n o t h e r s t u d y , M i s h e l e t a l . (1984) r e p o r t e d t h a t w h i l e hope was u n r e l a t e d t o s e r i o u s n e s s o f i l l n e s s , i t was n e g a t i v e l y a s s o c i a t e d w i t h u n c e r t a i n t y . F i n a l l y , H i l t o n (1988a) found t h a t women d i a g n o s e d w i t h b r e a s t c a n c e r a s s o c i a t e d p o s i t i v e emotions w i t h s u r e t y ( c e r t a i n t y ) . A f t e r a p a t i e n t has been t r a n s p l a n t e d w i t h a k i d n e y , he o r she must d e a l w i t h t h e p r o b a b i l i t i e s a s s o c i a t e d w i t h t r e a t m e n t e f f e c t i v e n e s s . As p a t i e n t s l i v e w i t h t h e i r t r a n s p l a n t and as t h e y e a r s p r o g r e s s , t r e a t m e n t e f f e c t i v e n e s s i s u n c e r t a i n . F o r t h e p a t i e n t s i n t h i s s t u d y , i t may be t h a t t h e y a r e more i n c l i n e d t o i n t e r p r e t p o s t t r a n s p l a n t u n c e r t a i n t y p o s i t i v e l y i n o r d e r t o b o l s t e r f e e l i n g s o f h o p e f u l n e s s . I t i s a l s o p o s s i b l e t h a t a m o d e r a t e l y low l e v e l of u n c e r t a i n t y must be m a i n t a i n e d because i t s c o n t i n u a t i o n i s n e c e s s a r y f o r a p o s i t i v e v i e w o f t h e s i t u a t i o n t o remain v i a b l e ( M i s h e l , 1990). A l t h o u g h no s i g n i f i c a n t r e l a t i o n s h i p was found between t o t a l u n c e r t a i n t y and p o s i t i v e f e e l i n g s i n t h i s s t u d y , i t i s p o s s i b l e t h a t i n t h i s s i t u a t i o n , c e r t a i n t y may be more a v e r s i v e t h a n u n c e r t a i n t y . I n summary, t h e a n c i l l a r y f i n d i n g s c o n t r i b u t e a d d i t i o n a l i n f o r m a t i o n r e g a r d i n g s u b j e c t s ' l e v e l and n a t u r e of u n c e r t a i n t y . O v e r a l l , not o n l y d i d s u b j e c t s p e r c e i v e low l e v e l s o f u n c e r t a i n t y , t h e y a l s o p e r c e i v e d low l e v e l s of s t r e s s because o f t h e i r u n c e r t a i n t y . I n a d d i t i o n , p a t i e n t s seemed t o a s s o c i a t e t h e i r u n c e r t a i n t y w i t h p o s i t i v e f e e l i n g s . F i n d i n g s i n d i c a t e d 124 t h a t t h e r e was a s i g n i f i c a n t p o s i t i v e r e l a t i o n s h i p between u n c e r t a i n t y and s t r e s s . Summary A d e s c r i p t i o n and d i s c u s s i o n o f t h e c h a r a c t e r i s t i c s o f t h e sample and f i n d i n g s of t h i s r e s e a r c h have been p r e s e n t e d i n t h i s c h a p t e r . S p e c i f i c a l l y , demographic, h e a l t h , and s u r g i c a l c h a r a c t e r i s t i c s of t h e s t u d y sample were p r e s e n t e d and d i s c u s s e d . F i n d i n g s r e l a t e d t o each of t h e t h r e e r e s e a r c h q u e s t i o n s were a l s o p r e s e n t e d . The f i n d i n g s o f t h i s r e s e a r c h were d i s c u s s e d i n r e l a t i o n t o t h e o r e t i c a l e x p e c t a t i o n s , o t h e r r e s e a r c h s t u d i e s , and m e t h o d o l o g i c a l problems i n h e r e n t i n t h e s t u d y . The sample c o n s i s t e d of 88 a d u l t k i d n e y t r a n s p l a n t p a t i e n t s who v o l u n t a r i l y p a r t i c i p a t e d i n t h e s t u d y . A l l p a t i e n t s were t r a n s p l a n t e d w i t h e i t h e r a l i v i n g - r e l a t e d o r c a d a v e r i c donor k i d n e y t r a n s p l a n t t h r e e and more y e a r s p r i o r t o t h e s t u d y . The age o f s u b j e c t s a t t h e t i m e o f s t u d y ranged from 27 t o 68 y e a r s . There were 58 males and 30 f e m a l e s . Over h a l f o f s u b j e c t s were employed i n a wide v a r i e t y of o c c u p a t i o n a l c a t e g o r i e s o f w h i c h t h e m a j o r i t y were p r o f e s s i o n a l i n n a t u r e . The sample appeared t o be v e r y w e l l e d u c a t e d where most of t h e s u b j e c t s had grade 12 o r u n i v e r s i t y l e v e l o f e d u c a t i o n . Almost h a l f o f t h e sample i n d i c a t e d t h e p r e s e n c e of h e a l t h o r m e d i c a l problems a s i d e from t h e i r k i d n e y d i s e a s e s . There were r e l a t i v e l y few major h e a l t h / m e d i c a l problems r e l a t e d t o l o n g - t e r m immunosuppressive t h e r a p y . The age a t t i m e o f k i d n e y t r a n s p l a n t ranged from 21 t o 60 w i t h a mean of 35.3 y e a r s . F o r t h e v a s t m a j o r i t y o f s u b j e c t s , t h i s was t h e i r f i r s t k i d n e y t r a n s p l a n t . 125 W h i l e t h e re s p o n s e r a t e o b t a i n e d i n t h i s s t u d y (59%) r e p r e s e n t e d a good r a t e c o n s i d e r i n g t h e l a c k o f p e r s o n a l c o n t a c t s u b j e c t s had w i t h t h e r e s e a r c h e r , i t i s unknown whether non-r e s p o n d e n t s d i f f e r from nonrespondents i n s i g n i f i c a n t ways. However, i t seemed t h a t t h i s sample was r e a s o n a b l y r e p r e s e n t a t i v e o f b o t h p r o v i n c i a l and n a t i o n a l t r e n d s i n t r a n s p l a n t a t i o n . O v e r a l l , l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s p e r c e i v e d m o d e r a t e l y low l e v e l s of u n c e r t a i n t y as measured by t h e U n c e r t a i n t y S t r e s s S c a l e . The n a t u r e o f u n c e r t a i n t y e x p e r i e n c e d appeared t o be g e n e r a t e d p r i m a r i l y by t h e i n d e t e r m i n a t e n e s s o f t h e s i t u a t i o n . F i n d i n g s r e v e a l e d t h a t t h e r e was v a r i a b i l i t y i n t h e l e v e l o f u n c e r t a i n t y p e r c e i v e d by t h e s t u d y sample. The t h e o r y o f u n c e r t a i n t y i n i l l n e s s h e l p e d t o e x p l a i n p o s s i b l e r e a s o n s f o r t h e l o w e r l e v e l o f u n c e r t a i n t y and i n c l u d e d f a c t o r s such as e v e n t f a m i l i a r i t y ; e v ent congruence; p e r c e p t i o n s o f o p t i m i s m stemming from renewed h e a l t h p o s t t r a n s p l a n t ; and, c l i n i c a l and t e c h n o l o g i c a l advances i n organ t r a n s p l a n t a t i o n . A l t h o u g h t h e m a j o r i t y o f s u b j e c t s had low l e v e l s , some s u b j e c t s e x p e r i e n c e d moderate t o h i g h l e v e l s of u n c e r t a i n t y . P o s s i b l e e x p l a n a t i o n s f o r h i g h e r l e v e l s o f u n c e r t a i n t y i n c l u d e d f a c t o r s such as c h r o n i c c o n c e r n s r e g a r d i n g k i d n e y t r a n s p l a n t a t i o n ; number o f h e a l t h / m e d i c a l problems a s i d e from k i d n e y d i s e a s e ; e d u c a t i o n a l l e v e l ; and, d e v e l o p m e n t a l t a s k s and l i f e e x p e r i e n c e s . The use o f c o p i n g s t r a t e g i e s was measured by t h e r e v i s e d J a l o w i e c C o p i n g S c a l e a c c o r d i n g t o e i g h t c o p i n g s t y l e s . F i n d i n g s i n d i c a t e d t h a t s u b j e c t s used a wide v a r i e t y o f c o p i n g s t r a t e g i e s 126 t o d e a l w i t h t h e s t r e s s o f l i v i n g w i t h a l o n g - t e r m k i d n e y t r a n s p l a n t . Because t h i s s i t u a t i o n can be r e g a r d e d as a s t r e s s f u l e x p e r i e n c e , t h e s t r e s s and c o p i n g t h e o r y was h e l p f u l i n e x p l a i n i n g p o s s i b l e r e a s o n s f o r v a r i a b i l i t y i n use o f c o p i n g methods. S u b j e c t s seemed t o p r e f e r t o use o p t i m i s t i c , s e l f r e l i a n t , and c o n f r o n t i v e c o p i n g ; f a t a l i s t i c and e motive c o p i n g were used l e a s t . There was a g e n e r a l tendency t o use p r o blem o r i e n t e d c o p i n g where p a t i e n t s a l s o c o n c e n t r a t e d on elements of hope, c o n t r o l , and c o n s t r u c t i v e p r o b l e m - s o l v i n g i n c o p i n g w i t h s t r e s s . The f i n d i n g s s u g g e s t e d some s i g n i f i c a n t p o s i t i v e r e l a t i o n s h i p s between u n c e r t a i n t y and use o f c o p i n g s t y l e s . I n t h i s s t u d y , e m o t i o n - f o c u s e d c o p i n g was p a r t i c u l a r l y f r e q u e n t and h i g h e r l e v e l s o f u n c e r t a i n t y were a s s o c i a t e d w i t h t h e use o f e v a s i v e , f a t a l i s t i c and emotive c o p i n g . G e n e r a l l y s p e a k i n g , l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s p e r c e i v e d low l e v e l s o f s t r e s s g e n e r a t e d by t h e u n c e r t a i n t y r e l a t e d t o t h e i r s i t u a t i o n . A s i g n i f i c a n t p o s i t i v e r e l a t i o n s h i p e x i s t e d between u n c e r t a i n t y and s t r e s s , w h i c h i s a c o n s i s t e n t f i n d i n g w i t h o t h e r s t u d i e s i n t h e l i t e r a t u r e . The i m p l i c a t i o n s f o r n u r s i n g p r a c t i c e , e d u c a t i o n , and r e s e a r c h t h a t a r i s e from t h e f i n d i n g s and d i s c u s s i o n p r e s e n t e d i n t h i s c h a p t e r a r e h i g h l i g h t e d i n t h e f o l l o w i n g f i n a l c h a p t e r . 127 CHAPTER FIVE Summary, C o n c l u s i o n s , I m p l i c a t i o n s and Recommendations I n t r o d u c t i o n T h i s s t u d y was d e s i g n e d t o i n v e s t i g a t e t h e p e r c e i v e d l e v e l and n a t u r e o f u n c e r t a i n t y and t h e c o p i n g s t r a t e g i e s employed by a d u l t k i d n e y p a t i e n t s who were t h r e e and more y e a r s p o s t t r a n s p l a n t . I n a d d i t i o n , i t was d e s i g n e d t o e x p l o r e t h e r e l a t i o n s h i p between u n c e r t a i n t y and c o p i n g s t r a t e g i e s i n l o n g t e r m k i d n e y t r a n s p l a n t p a t i e n t s . An o v e r v i e w o f t h e s t u d y i s p r e s e n t e d i n t h i s c h a p t e r f o l l o w e d by c o n c l u s i o n s , i m p l i c a t i o n s f o r n u r s i n g p r a c t i c e , t h e o r y , e d u c a t i o n , and recommendations f o r f u r t h e r r e s e a r c h . Summary T h i s s t u d y was implemented t o d e s c r i b e t h e p e r c e p t i o n s o f u n c e r t a i n t y and c o p i n g s t r a t e g i e s used by k i d n e y t r a n s p l a n t p a t i e n t s and t o e x p l o r e how t h e y managed t h e i r u n c e r t a i n t y and t h e s t r e s s i t g e n e r a t e d w h i l e l i v i n g i n a l o n g - t e r m k i d n e y t r a n s p l a n t s i t u a t i o n . The impetus f o r t h i s s t u d y a r o s e from t h i s r e s e a r c h e r ' s c l i n i c a l o b s e r v a t i o n s . F o r p a t i e n t s i n a l o n g - t e r m k i d n e y t r a n s p l a n t s i t u a t i o n , t h e y can e x p e r i e n c e v a r y i n g degrees o f u n c e r t a i n t y and s t r e s s . I n a d d i t i o n , t h e r e i s a d i s t i n c t l a c k o f r e p o r t e d i n v e s t i g a t i o n on t h e r e l a t i o n s h i p t h e s e v a r i a b l e s have f o r p a t i e n t s i n t h i s s i t u a t i o n . I t was r e c o g n i z e d t h a t a s t u d y was needed t o g e n e r a t e b a s e l i n e knowledge w h i c h c o u l d p r o v i d e new d i r e c t i o n s f o r t h e p r o v i s i o n o f e f f e c t i v e h e a l t h c a r e t o t h e s e i n d i v i d u a l s . 128 T h i s d e s c r i p t i v e c o r r e l a t i o n a l s t u d y was c o n d u c t e d i n a p r o v i n c e i n w e s t e r n Canada. Q u e s t i o n n a i r e s were m a i l e d t o 150 p a t i e n t s who met t h e c r i t e r i a from a f o l l o w - u p c l i n i c i n a l a r g e u r b a n t e a c h i n g h o s p i t a l . They were E n g l i s h s p e a k i n g , a d u l t , k i d n e y t r a n s p l a n t p a t i e n t s who r e c e i v e d e i t h e r a l i v i n g - r e l a t e d o r c a d a v e r i c donor k i d n e y t r a n s p l a n t t h r e e and more y e a r s p r i o r t o t h e s t u d y . Anonymity of i n v e s t i g a t o r t o s u b j e c t s was m a i n t a i n e d . P e r c e p t i o n s of u n c e r t a i n t y and use o f c o p i n g s t r a t e g i e s were measured a t o n l y one p o i n t i n t i m e . A l l s u b j e c t s c o m p l e t e d t h e r e v i s e d J a l o w i e c Coping S c a l e ( J C S ) , t h e U n c e r t a i n t y S t r e s s S c a l e (USS), and a p a t i e n t i n f o r m a t i o n s h e e t . The c o n v e n i e n c e sample t o t a l l e d 88 s u b j e c t s . The age o f s u b j e c t s a t t h e t i m e of s t u d y ranged from 27 t o 68 y e a r s . There were 58 males and 30 f e m a l e s . Over h a l f o f t h e s u b j e c t s were employed i n a wide v a r i e t y o f o c c u p a t i o n a l c a t e g o r i e s o f w h i c h t h e m a j o r i t y were p r o f e s s i o n a l i n n a t u r e . The s t u d y sample appeared t o be v e r y w e l l educated. Most of t h e s u b j e c t s (77.3%) had grade 12 o r u n i v e r s i t y l e v e l e d u c a t i o n . A l m o st h a l f o f t h e sample i n d i c a t e d t h e p r e s e n c e of h e a l t h o r m e d i c a l problems a s i d e from t h e i r k i d n e y d i s e a s e . However, t h e r e were r e l a t i v e l y few major m e d i c a l / h e a l t h problems r e l a t e d t o l o n g - t e r m immuno-s u p p r e s s i v e t h e r a p y . The age a t t i m e of k i d n e y t r a n s p l a n t ranged from 21 t o 60 w i t h a mean of 35.3 y e a r s . The number o f y e a r s t h a t p a t i e n t s had l i v e d w i t h t h e i r c u r r e n t k i d n e y t r a n s p l a n t r a nged from 3.1 t o 20.9 y e a r s w i t h t h e m a j o r i t y o f s u b j e c t s b e i n g t r a n s p l a n t e d under 10 y e a r s . F o r t h e v a s t m a j o r i t y o f p a t i e n t s , t h e k i d n e y t r a n s p l a n t was t h e i r f i r s t . 129 The s t r e s s , a p p r a i s a l , and c o p i n g t h e o r y o f L a z a r u s and Folkman (1984) s e r v e d as t h e t h e o r e t i c a l framework f o r t h e s t u d y . A c c o r d i n g t o t h i s t h e o r y , an i n d i v i d u a l a p p r a i s e s an event i n terms o f one's l i f e e x p e r i e n c e and r e a c t s t o t h a t event i n d i f f e r e n t ways depending on t h e meaning t h e event has f o r t h e i n d i v i d u a l . T h i s c o g n i t i v e a p p r a i s a l p r o c e s s p l a y s a key r o l e i n d e t e r m i n i n g t h e impact of s t r e s s f u l e v e n ts and t h e s e l e c t i o n o f c o p i n g s t r a t e g i e s . C o p i n g s t r a t e g i e s a r e e f f o r t s t h a t t h e i n d i v i d u a l g e n e r a t e s as a r e s u l t o f c o g n i t i v e a p p r a i s a l s i n o r d e r t o change t h e meaning o f t h e s i t u a t i o n o r t o m o d i f y t h e envir o n m e n t . L a z a r u s and Folkman (1984) d i s t i n g u i s h between t h e main f u n c t i o n s o f c o p i n g , namely between c o p i n g t h a t i s d i r e c t e d a t managing o r a l t e r i n g t h e problem c a u s i n g t h e d i s t r e s s ( p r o b l e m - f o c u s e d c o p i n g ) , and c o p i n g t h a t i s d i r e c t e d a t r e g u l a t i n g e m o t i o n a l r e s p o n s e s t o t h e problem ( e m o t i o n - f o c u s e d c o p i n g ) . When r e s e a r c h i n g a s t r e s s f u l s i t u a t i o n , i t i s n e c e s s a r y t o o b t a i n s e l f - r e p o r t d a t a which d e s c r i b e t h e e x p e r i e n c e from t h e p e r s p e c t i v e o f t h e i n d i v i d u a l . Answers t o t h r e e major r e s e a r c h q u e s t i o n s were examined i n o r d e r t o d e s c r i b e and e x p l o r e t h e r e l a t i o n s h i p between u n c e r t a i n t y and c o p i n g s t r a t e g i e s i n l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s . Because l i v i n g w i t h a k i d n e y t r a n s p l a n t can be r e g a r d e d as an u n c e r t a i n and s t r e s s f u l e x p e r i e n c e , s t r e s s , a p p r a i s a l , and c o p i n g t h e o r y p r o v i d e d u s e f u l d i r e c t i o n f o r t h e i n t e r p r e t a t i o n and d i s c u s s i o n of t h e f i n d i n g s o f t h i s r e s e a r c h . O v e r a l l , l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s p e r c e i v e d m o d e r a t e l y low l e v e l s o f u n c e r t a i n t y as measured by t h e 130 u n c e r t a i n t y s c a l e . T h i s was found t o s u p p o r t e a r l i e r r e s e a r c h w h i c h a d d r e s s e d u n c e r t a i n t y i n a sample of c a r d i a c p a t i e n t s who had r e c e i v e d b i o l o g i c v a l v e i m p l a n t s . The n a t u r e o f t h e u n c e r t a i n t y e x p e r i e n c e d by t h e s t u d y sample appeared t o be g e n e r a t e d p r i m a r i l y by t h e i n d e t e r m i n a t e n e s s of t h e s i t u a t i o n . F i n d i n g s demonstrated t h a t t h e r e was v a r i a b i l i t y i n t h e p a t i e n t s ' l e v e l o f u n c e r t a i n t y . The t h e o r y of u n c e r t a i n t y i n i l l n e s s h e l p e d t o e x p l i c a t e p o s s i b l e r e a s o n s f o r t h e h i g h and low l e v e l s o f u n c e r t a i n t y found i n t h e s t u d y sample. Lower l e v e l s o f u n c e r t a i n t y appeared t o be a s s o c i a t e d w i t h f a c t o r s such as e v e n t f a m i l i a r i t y , event congruence, p e r c e p t i o n s o f o p t i m i s m , and t e c h n o l o g i c a l advances i n t h e f i e l d o f c l i n i c a l o rgan t r a n s p l a n t a t i o n . W h i l e t h e m a j o r i t y o f p a t i e n t s e x p e r i e n c e d low l e v e l s , some s u b j e c t s had moderate t o h i g h l e v e l s o f u n c e r t a i n t y . H i g h e r l e v e l s o f u n c e r t a i n t y appeared t o be a s s o c i a t e d w i t h f a c t o r s such as c h r o n i c h e a l t h concerns r e g a r d i n g t r a n s -p l a n t a t i o n , t h e number of h e a l t h o r m e d i c a l problems a s i d e from r e n a l d i s e a s e , e d u c a t i o n a l l e v e l , and l i f e e x p e r i e n c e . F i n d i n g s a l s o i n d i c a t e d t h a t s u b j e c t s used a wide v a r i e t y o f c o p i n g s t r a t e g i e s t o d e a l w i t h t h e s t r e s s and u n c e r t a i n t y o f l i v i n g w i t h a l o n g - t e r m k i d n e y t r a n s p l a n t . S u b j e c t s seemed t o p r e d o m i n a n t l y use o p t i m i s t i c , s e l f - r e l i a n t , and c o n f r o n t i v e c o p i n g . There was a g e n e r a l tendency t o use p r o b l e m - o r i e n t e d forms o f c o p i n g where p a t i e n t s appeared t o c o n c e n t r a t e on e lements of a hope, p o s i t i v e t h i n k i n g , c o n t r o l , and a r a t i o n a l and c o n s t r u c t i v e approach t o p r o b l e m - s o l v i n g . E m o t i o n - f o c u s e d s t r a t e g i e s , p a r t i c u l a r l y e v a s i v e , and emotive c o p i n g were used 131 l e s s f r e q u e n t l y . The f i n d i n g s a l s o s u g g e s t e d s i g n i f i c a n t p o s i t i v e r e l a t i o n s h i p s between u n c e r t a i n t y and c o p i n g s t y l e s . S e l e c t e d e m o t i o n - f o c u s e d forms o f c o p i n g were a s s o c i a t e d w i t h u n c e r t a i n t y b u t no p r o b l e m - f o c u s e d s t r a t e g i e s demonstrated t h i s r e l a t i o n s h i p . I n p a r t i c u l a r e v a s i v e ( r =.36, p < .01), f a t a l i s t i c ( r =.47, p < .001), and emotive c o p i n g ( r =.42, p < .001) were a s s o c i a t e d w i t h u n c e r t a i n t y . There was a g e n e r a l tendency f o r h i g h e r l e v e l s o f u n c e r t a i n t y t o be a s s o c i a t e d w i t h g r e a t e r use o f e m o t i o n - f o c u s e d forms o f c o p i n g . Long-term k i d n e y t r a n s p l a n t p a t i e n t s p e r c e i v e d low l e v e l s o f s t r e s s g e n e r a t e d by t h e i r u n c e r t a i n t y . A s i g n i f i c a n t p o s i t i v e r e l a t i o n s h i p e x i s t e d between u n c e r t a i n t y and s t r e s s ( r =.94, p =.00). These f i n d i n g s were c o n s i s t e n t w i t h o t h e r s t u d i e s i n t h e l i t e r a t u r e and i n d i c a t e d t h a t t h e h i g h e r t h e l e v e l o f u n c e r t a i n t y , t h e h i g h e r t h e s u b j e c t s ' o v e r a l l p e r c e p t i o n s o f s t r e s s . The number of h e a l t h problems t h a t s u b j e c t s r e p o r t e d was a l s o a s s o c i a t e d w i t h l e v e l o f u n c e r t a i n t y . The d i r e c t i o n o f t h e r e l a t i o n s h i p s u g g e s t e d t h a t p a t i e n t s who r e p o r t e d more h e a l t h problems appeared t o have h i g h e r u n c e r t a i n t y ( r =.25, p =.01). P a t i e n t s w i t h a lower l e v e l of e d u c a t i o n a l s o appeared t o have a h i g h e r l e v e l of u n c e r t a i n t y ( r =-.24, p = .02), a f i n d i n g t h a t was s u p p o r t e d by h e a l t h - r e l a t e d r e s e a r c h l i t e r a t u r e . C o n c l u s i o n s Based upon t h e f i n d i n g s of t h i s r e s e a r c h , some t e n t a t i v e c o n c l u s i o n s can be made. A l t h o u g h t o t a l s a m p l i n g was done t h a t i n c l u d e d p a t i e n t s who had been t r a n s p l a n t e d t h r e e and more y e a r s 132 p r i o r t o t h e s t u d y , and a response r a t e o f 59% r e p r e s e n t s a good r a t e , i t i s not known whether r e s p o n d e n t s d i f f e r from non-r e s p o n d e n t s i n s i g n i f i c a n t ways. F i n d i n g s o f t h i s s t u d y s u p p o r t r e s u l t s o f o t h e r r e s e a r c h s t u d i e s w i t h s u b j e c t s h a v i n g o t h e r m e d i c a l d i s o r d e r s . F u r t h e r m o r e , c o n c l u s i o n s s h o u l d s t i l l be i n t e r p r e t e d c a u t i o u s l y when g e n e r a l i z i n g t o t r a n s p l a n t p a t i e n t s , p a r t i c u l a r l y t h o s e who have been t r a n s p l a n t e d i n o t h e r i n s t i t u t i o n s beyond a Canadian h e a l t h c a r e c o n t e x t . O v e r a l l , k i d n e y t r a n s p l a n t p a t i e n t s who a r e t r a n s p l a n t e d t h r e e and more y e a r s e x p e r i e n c e m o d e r a t e l y low l e v e l s o f u n c e r t a i n t y . The n a t u r e o f u n c e r t a i n t y appears t o be p r i m a r i l y g e n e r a t e d by t h e i n d e t e r m i n a t e n e s s o f t h e s i t u a t i o n . Number o f h e a l t h o r m e d i c a l problems and e d u c a t i o n a l l e v e l appear t o be s i g n i f i c a n t f a c t o r s i n t h e u n c e r t a i n t y o f p a t i e n t s w i t h a l o n g - t e r m k i d n e y t r a n s p l a n t . H e a l t h problems o t h e r t h a n k i d n e y d i s e a s e t e n d t o be a s s o c i a t e d w i t h h i g h e r l e v e l s o f u n c e r t a i n t y as does a lower l e v e l of e d u c a t i o n . K i d n e y t r a n s p l a n t p a t i e n t s use v a r i o u s c o p i n g s t r a t e g i e s t o manage t h e r e q u i r e m e n t s of l i v i n g i n a l o n g - t e r m t r a n s p l a n t s i t u a t i o n . P a t i e n t s use t y p e s o f s t r a t e g i e s t h a t r e l a t e t o b o t h t h e e m o t i o n - f o c u s e d and p r o b l e m - f o c u s e d f u n c t i o n s o f c o p i n g . P a t i e n t s use a v a r i e t y o f s t r a t e g i e s t o manage d i f f e r e n t f a c e t s o f u n c e r t a i n t y and t h e s t r e s s i t g e n e r a t e s . O p t i m i s t i c , s e l f - r e l i a n t , and c o n f r o n t i v e c o p i n g appear t o be used t h e most by l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s . T h i s may s u g g e s t a d e s i r e by p a t i e n t s t o remain i n c o n t r o l and d e a l d i r e c t l y and a c t i v e l y w i t h t h e i r s t r e s s u s i n g a c o n s t r u c t i v e and 133 r a t i o n a l approach. There a r e a s s o c i a t i o n s between u n c e r t a i n t y and c o p i n g s t y l e s e s p e c i a l l y t h o s e a s s o c i a t e d w i t h t h e use o f e v a s i v e , f a t a l i s t i c , and e motive c o p i n g . There i s a g e n e r a l tendency f o r h i g h e r l e v e l s o f u n c e r t a i n t y t o be a s s o c i a t e d w i t h g r e a t e r use o f e m o t i o n - f o c u s e d forms o f c o p i n g . However, p r o b l e m - o r i e n t e d modes of c o p i n g do not have t h i s r e l a t i o n s h i p . These a s s o c i a t i o n s may s u g g e s t t h a t h i g h e r l e v e l s o f u n c e r t a i n t y i n t e r f e r e w i t h t h e p e r s o n ' s a b i l i t y t o a p p r a i s e t h e s i t u a t i o n and m o b i l i z e c o p i n g r e s o u r c e s . I m p l i c a t i o n s A l t h o u g h t h e f i n d i n g s o f t h i s s t u d y a r e not g e n e r a l i z a b l e , t h e y s u g g e s t many i m p l i c a t i o n s f o r t h e p r o v i s i o n o f n u r s i n g c a r e t o a d u l t l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s . I m p l i c a t i o n s f o r n u r s i n g p r a c t i c e , t h e o r y , and e d u c a t i o n w i l l be p r e s e n t e d i n t h e f o l l o w i n g s e c t i o n s . N u r s i n g P r a c t i c e and Theory The i n s t r u m e n t s i n t h i s s t u d y c o u l d be used as i n i t i a l n u r s i n g t o o l s . A l t h o u g h t h e m a j o r i t y o f s u b j e c t s had m o d e r a t e l y low l e v e l s o f u n c e r t a i n t y , t h e r e were some who had h i g h e r l e v e l s . T h e r e f o r e , t h e r e i s a need f o r assessment o f t h e degree and n a t u r e o f u n c e r t a i n t y . Such d i f f e r e n c e s i n needs can o n l y be met t h r o u g h i n d i v i d u a l i z e d assessments. N u r s i n g d i a g n o s e s r e l a t e d i n terms o f p o s s i b l e e t i o l o g i e s c o u l d o r i g i n a t e from t h e d a t a c o l l e c t e d . The p a t i e n t and nurse c o u l d t h e n c o l l a b o r a t e on t h e p l a n o f c a r e , i n c l u d i n g i n t e r v e n t i o n s t o manage u n c e r t a i n t y . The n u r s e c o u l d t h e n r e p e a t t h e d a t a c o l l e c t i o n p r o c e s s , u s i n g t h e 134 i n s t r u m e n t s a g a i n , a t i n t e r v a l s t o e v a l u a t e t h e l o n g - t e r m e f f e c t i v e n e s s o f t h e p l a n o f c a r e . The f i n d i n g s o f t h i s s t u d y seem t o i n d i c a t e t h a t some u n c e r t a i n t y r e l a t e s t o t h e i n d e t e r m i n a t e n e s s o f t h e s i t u a t i o n . O t h e r a r e a s o f u n c e r t a i n t y a r e r e l a t e d t o p r o b a b i l i t y , b e i n g d o u b t f u l , i n d e f i n i t e n e s s and r e l i a b i l i t y / d e p e n d a b i l i t y . U n c e r t a i n t y r e g a r d i n g t h e f u t u r e i s a r e a l i t y t h a t l o n g - t e r m k i d n e y p a t i e n t s may need t o l e a r n t o cope w i t h as a p a r t o f l i v i n g w i t h a k i d n e y t r a n s p l a n t . Nurses need t o be a b l e t o h e l p p a t i e n t s i d e n t i f y where u n c e r t a i n t i e s l i e and what can be a l t e r e d and what cannot. Nurses s h o u l d e x p l o r e how u n c e r t a i n p e r s o n s f e e l about t h e i r f u t u r e . When u n c e r t a i n t y i s composed o f c o n c e r n s r e g a r d i n g t h e f u t u r e , p a t i e n t s may f e e l t h a t t h e y a r e u n a b l e t o c o n t r o l t h e outcome o f t h e i r i l l n e s s . M i s c o n c e p t i o n s s h o u l d be i d e n t i f i e d and c l a r i f i e d . Symptoms and t h e i r i n t e r p r e t a t i o n may e x p l a i n a v a r i e t y o f r e s p o n s e s t o i l l n e s s and i t s t r e a t m e n t . H e l p i n g p a t i e n t s t o c o r r e c t l y i n t e r p r e t symptoms may reduce t h e i r u n c e r t a i n t y and f a c i l i t a t e a h o p e f u l p e r s p e c t i v e . U n c e r t a i n t y g e n e r a t e d by a l a c k o f c l a r i t y , l a c k o f i n f o r m a t i o n , o r m i s c o n c e p t i o n s can be reduced t h r o u g h p a t i e n t e d u c a t i o n . P r o v i d i n g knowledge may h e l p t o reduce u n c e r t a i n t y and enhance f e e l i n g s o f c o n t r o l o v e r t h e s i t u a t i o n . I n f o r m a t i o n c o u l d be i n c o r p o r a t e d d u r i n g i n d i v i d u a l t e a c h i n g s e s s i o n s o r i n w r i t t e n p a t i e n t e d u c a t i o n m a t e r i a l . However, some p a t i e n t s may not want much i n f o r m a t i o n . Some may p r e f e r t o t o l e r a t e u n c e r t a i n t y r a t h e r t h a n d e a l w i t h t h e f e a r o f t h e i r unknown 135 f u t u r e . Nurses need t o r e c o g n i z e and a c c e p t t h i s w i t h o u t f e e l i n g c o m p e l l e d t o d e l i v e r such i n f o r m a t i o n . I t may a l s o be u s e f u l t o a s s e s s whether m i s c o n c e p t i o n s about symptoms and t r e a t m e n t c o n t r i b u t e t o f e e l i n g s of ambivalence and f e a r o f knowledge. When p r o v i d i n g i n f o r m a t i o n , t h e i n d i v i d u a l ' s p a s t e x p e r i e n c e and l e v e l o f e d u c a t i o n must be t a k e n i n t o a c c o u n t . F o r example, i n t h i s s t u d y , p a t i e n t s w i t h l e s s e d u c a t i o n tended t o e x p e r i e n c e a h i g h e r l e v e l o f u n c e r t a i n t y . I n f o r m a t i o n s h o u l d be d i s s e m i n a t e d i n ways t h a t a r e geared toward t h e p a t i e n t ' s l e v e l o f e d u c a t i o n . Nurses need t o be a b l e d i s s e m i n a t e i n f o r m a t i o n u s i n g t e a c h i n g methods t h a t a r e i n d i v i d u a l i z e d t o o p t i m i z e t h e p a t i e n t ' s comprehension. The e f f e c t s o f p r o v i d i n g i n f o r m a t i o n must a l s o be c l o s e l y m o n i t o r e d . The f i n d i n g s o f t h i s s t u d y a l s o seem t o i n d i c a t e t h a t t h e r e i s t h e p o t e n t i a l t o a p p r a i s e u n c e r t a i n t y as an o p p o r t u n i t y . Some p a t i e n t s may need t o m a i n t a i n an u n c e r t a i n s t a t e i n o r d e r t o vi e w t h e s i t u a t i o n p o s i t i v e l y and keep a h o p e f u l p e r s p e c t i v e . R a t h e r t h a n v i e w i n g u n c e r t a i n t y as d i s r u p t i v e t o t h e pe r s o n ' s l i f e and sense o f c o n t r o l , n u r s e s c o u l d h e l p p a t i e n t s t o r e s t r u c t u r e t h e i r u n c e r t a i n t y . T h i s c o u l d be i n t e g r a t e d i n t o t h e s i t u a t i o n o f l i v i n g w i t h a k i d n e y t r a n s p l a n t e a r l y on i n t h e t r a n s p l a n t e x p e r i e n c e . Sometimes ch a n g i n g t h e p a t i e n t ' s p e r c e p t i o n o f u n c e r t a i n t y can be done t h r o u g h e x p l o r i n g v a r i o u s c o n t i n g e n c i e s where one's a c t i o n s a r e a p p r a i s e d i n terms o f v a r y i n g p r o b a b i l i t i e s f o r s u c c e s s . I f p a t i e n t s t a k e t h e v i e w t h a t n o t h i n g i n l i f e i s c e r t a i n , a c c e p t i n g u n c e r t a i n t y p r o v i d e s an o p p o r t u n i t y t o c o n s i d e r m u l t i p l e p o s s i b i l i t i e s . Nurses would need t o encourage p a t i e n t s t o c o n s i d e r a l t e r n a t i v e s and e x p l o r e t h e i r c h o i c e s as p o s s i b i l i t i e s . Nurses c o u l d a l s o h e l p p a t i e n t s t o c o n s i d e r m u l t i p l e new ways t o a c c o m p l i s h v a l u e d a c t i v i t i e s . I n a d d i t i o n , a l t e r n a t i v e s i n a d j u s t i n g t o t h e c h a n g i n g n a t u r e o f t h e i l l n e s s acknowledges t h a t t h e r e a r e many f a c t o r s i n f l u e n c i n g t h e p a t i e n t ' s r e s ponse t o k i d n e y t r a n s p l a n t a t i o n . S i n c e a major f i n d i n g o f t h i s s t u d y a l s o i n d i c a t e d t h a t t h e s t r a t e g i e s o f p o s i t i v e t h i n k i n g , h o p i n g , and t r u s t i n g a r e e s p e c i a l l y u s e f u l f o r l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s , t h e i r use s h o u l d be emphasized. P a t i e n t s use a v a r i e t y o f c o p i n g s t r a t e g i e s r e l a t e d t o b o t h p r o b l e m - f o c u s e d and e m o t i o n - f o c u s e d c o p i n g . The p e rson's a b i l i t y t o cope w i t h t h e i r u n c e r t a i n t i e s has a major e f f e c t on h i s o r her w e l l - b e i n g . Nurses need t o a s s e s s b o t h a c t u a l and p o t e n t i a l c o p i n g s t r a t e g i e s . Through s k i l l e d communication t e c h n i q u e s , n u r s e s c o u l d h e l p p a t i e n t s r e c o g n i z e t h e i r own s t r e n g t h s and needs as w e l l as i d e n t i f y what i s and what i s not h e l p f u l f o r them i n a g i v e n s i t u a t i o n . I f p a t i e n t s use p r o b l e m - o r i e n t e d c o p i n g , n u r s e s can s u p p o r t and p a r t i c i p a t e i n t h e p r o b l e m - s o l v i n g p r o c e s s by p r o v i d i n g i n f o r m a t i o n , d i s c u s s i n g a l t e r n a t i v e c h o i c e s , and a s s i s t i n g i n d i v i d u a l s t o i d e n t i f y and t e s t p o s s i b l e s o l u t i o n s . S t r a t e g i e s t h a t have been h e l p f u l may need t o be r e i n f o r c e d . And when s t r a t e g i e s a r e d e f i c i e n t , n u r s e s need t o e x p l o r e w i t h t h e i r p a t i e n t s p o s s i b l e s t r a t e g i e s and d e t e r m i n e w h i c h a r e t h e most a p p r o p r i a t e and a c c e p t a b l e ways of h a n d l i n g t h e s i t u a t i o n . P a t i e n t s need c o n t a c t w i t h a n u rse t o v e n t i l a t e f e e l i n g s , t o d i s c u s s c o n c e r n s , t o ask q u e s t i o n s about c a r e , and m o n i t o r t h e 137 i n d i v i d u a l ' s c o p i n g o v e r t i m e . A warm, a c c e p t i n g , atmosphere i s needed f o r t h i s e x p r e s s i o n o f emotion. Some p a t i e n t s may b e n e f i t from p a r t i c i p a t i o n i n a group, o t h e r s from i n d i v i d u a l c o u n s e l l i n g s e s s i o n s w i t h t h e n u r s e . Some p a t i e n t s may b e n e f i t from a t t e n d i n g a s u p p o r t group where t h e y can sh a r e t h e i r f e e l i n g s and e x p e r i e n c e s w i t h o t h e r p a t i e n t s c o n f r o n t i n g a s i m i l a r s i t u a t i o n . I n a d d i t i o n , i t appears t h a t some p a t i e n t s c o u l d b e n e f i t from l e a r n i n g s t r e s s management t e c h n i q u e s t o r e g u l a t e t h e d i s t r e s s i n g r e a c t i o n s a r i s i n g from t h e i r u n c e r t a i n t i e s . T h i s s t u d y i s an i n i t i a l e x p l o r a t i o n i n t o t h e c o n c e p t s o f u n c e r t a i n t y and c o p i n g f o r p a t i e n t s w i t h a l o n g - t e r m k i d n e y t r a n s p l a n t . The t h e o r e t i c a l framework used i n t h i s s t u d y p r o v i d e d d i r e c t i o n t o e x p l a i n t h e r e l a t i o n s h i p between u n c e r t a i n t y and c o p i n g s t y l e s . Nurses s h o u l d use t h i s t h e o r y as a g u i d e when a s s e s s i n g u n c e r t a i n t y , s t r e s s , and c o p i n g i n l o n g t e r m k i d n e y t r a n s p l a n t p a t i e n t s . U s i n g L a z a r u s and Folkman's (1984) t h e o r y o f s t r e s s and c o p i n g i n c l i n i c a l p r a c t i c e might r e s u l t i n g r e a t e r r e l e v a n c e o f n u r s i n g i n t e r v e n t i o n s d i r e c t e d t o ward t h e r e d u c t i o n o f u n c e r t a i n t y . The t h e o r y o f u n c e r t a i n t y i n i l l n e s s a l s o appears t o have c o n t r i b u t e d t o t h e u n d e r s t a n d i n g o f u n c e r t a i n t y f o r t h i s group o f k i d n e y t r a n s p l a n t p a t i e n t s . P r o v i d i n g i n f o r m a t i o n t o p a t i e n t s i s an i m p o r t a n t component o f n u r s i n g c a r e . The i d e a t h a t p r o v i d i n g i n f o r m a t i o n may h e l p r e d u ce u n c e r t a i n t y and h e l p t o improve c o p i n g i s a s a l i e n t one, wh i c h i s worthy o f f u r t h e r s t u d y . T h e r e f o r e , t h e u n c e r t a i n t y i n i l l n e s s and s t r e s s and c o p i n g t h e o r i e s s h o u l d c o n t i n u e t o be t e s t e d i n c l i n i c a l p r a c t i c e and g u i d e f u r t h e r r e s e a r c h endeavours 138 w i t h p o p u l a t i o n s s i m i l a r t o t h i s s t u d y and o t h e r human organ t r a n s p l a n t p a t i e n t p o p u l a t i o n s . N u r s i n g E d u c a t i o n A n u r s i n g c u r r i c u l u m needs t o i n c l u d e t h e c o n c e p t s o f u n c e r t a i n t y , c o p i n g , s t r e s s , and c h r o n i c i l l n e s s . N u r s i n g e d u c a t i o n must f a c i l i t a t e s t u d e n t s ' l e a r n i n g and p r a c t i c e o f h i g h l e v e l assessment s k i l l s . P s y c h o s o c i a l assessment s k i l l s a r e p a r t i c u l a r l y i m p o r t a n t f o r u n d e r s t a n d i n g t h e s i t u a t i o n o f l i v i n g w i t h a l o n g - t e r m k i d n e y t r a n s p l a n t . I n a d d i t i o n , communication s k i l l s , b o t h v e r b a l and n o n - v e r b a l would need t o be i n c l u d e d i n a c u r r i c u l u m . S t u d e n t s would a l s o need l e a r n i n g o p p o r t u n i t i e s t h a t would d e v e l o p t h e s k i l l s r e l e v a n t t o p r e p a r i n g w r i t t e n and a u d i o v i s u a l m a t e r i a l f o r p a t i e n t e d u c a t i o n . Recommendations f o r F u r t h e r R e s e a r c h T h i s d e s c r i p t i v e s t u d y i s an i n i t i a l e x p l o r a t i o n and c o n t r i b u t e s o n l y b e g i n n i n g knowledge t o t h e u n d e r s t a n d i n g of t h e e x p e r i e n c e of l i v i n g w i t h u n c e r t a i n t y and how p a t i e n t s cope w i t h u n c e r t a i n t y and t h e s t r e s s i t g e n e r a t e s . C l e a r l y , more r e s e a r c h i s n e c e s s a r y t o g u i d e t h e d e l i v e r y o f h e a l t h c a r e t o p a t i e n t s who l i v e i n t h i s s i t u a t i o n . S e v e r a l s u g g e s t i o n s f o r f u r t h e r r e s e a r c h a r e o u t l i n e d i n t h e s e c t i o n f o l l o w i n g . Because p e r c e p t i o n s o f u n c e r t a i n t y and t h e c o p i n g s t r a t e g i e s used were o n l y measured a t one p o i n t i n t i m e , t h i s s t u d y i s a b r o a d assessment of u n c e r t a i n t y and c o p i n g s t r a t e g i e s employed and as s u c h , d i d not a l l o w s e e i n g a change o r t h e c o p i n g p r o c e s s i n t h i s p o p u l a t i o n . No r e s e a r c h was found t h a t examined whether o r not t h e r e l a t i v e i m p o r t a n c e of t h e s e v a r i a b l e s changes o v e r 139 t h e t r a n s p l a n t p r o c e s s . Because t h e l o n g i t u d i n a l d e s i g n e n a b l e s t h e r e s e a r c h e r t o s t u d y t h e same i n d i v i d u a l s o v e r t i m e and a c r o s s s i t u a t i o n s , l o n g i t u d i n a l s t u d i e s a r e needed i n o r d e r t o i d e n t i f y p a t t e r s o f c o p i n g s t r a t e g i e s used and i n v e s t i g a t e t h e p r o c e s s o f c o p i n g . A l o n g i t u d i n a l s t u d y c o u l d be d e s i g n e d t o f o l l o w k i d n e y p a t i e n t s w h i l e a w a i t i n g t h e i r t r a n s p l a n t , i m m e d i a t e l y p o s t t r a n s p l a n t , and a t v a r i o u s p o i n t s p o s t - t r a n s p l a n t up t o 20 y e a r s t o d e t e r m i n e whether o r not changes i n t h e r e l a t i o n s h i p between u n c e r t a i n t y and c o p i n g s t r a t e g i e s o c c u r . I n t h i s s t u d y , r e a d i n g and comprehension of t h e E n g l i s h language were n e c e s s a r y i n o r d e r t o complete t h e q u e s t i o n n a i r e . Because of t h i s c r i t e r i o n , a c l e a r p i c t u r e o f t h e c u l t u r a l d i m e n s i o n o f t h e sample was not a l l o w e d . There i s a need f o r r e p l i c a t i o n o f t h i s s t u d y w i t h s u b j e c t s drawn from v a r i o u s c u l t u r a l s u b - p o p u l a t i o n s and wide g e o g r a p h i c a r e a s t o broaden t h e g e n e r a l i z a b i l i t y and p o t e n t i a l i m p l i c a t i o n s . I n o r d e r t o make i n f e r e n c e s t o t h e e n t i r e p o p u l a t i o n o f p a t i e n t s , a n a t i o n a l p r o b a b i l i t y sample s u r v e y i n c l u d i n g a much l a r g e r number o f c e n t r e s would be r e q u i r e d . V o l u n t e e r s u b j e c t s were used i n t h i s s t u d y and i t i s known t h a t v o l u n t e e r s a r e l i k e l y a b i a s e d sample of t h e t a r g e t p o p u l a t i o n . However, i n t h i s s t u d y , i t i s not known whether r e s p o n d e n t s d i f f e r from nonrespondents i n s i g n i f i c a n t ways. I n t h i s s t u d y , because p a t i e n t s responded t o t h e q u e s t i o n n a i r e i t i s p o s s i b l e t h a t t h e y may have a c t e d on a sense o f a l t r u i s m . That i s , some p a t i e n t s may have viewed t h e i r p a r t i c i p a t i o n i n t h i s s t u d y as an o p p o r t u n i t y t o g i v e something back t o t h e s c i e n t i f i c 140 community. I n a d d i t i o n , t h e p a t i e n t s i n t h i s s t u d y were v e r y w e l l e d u c a t e d . P a t i e n t s w i t h a h i g h e r l e v e l o f e d u c a t i o n may have been m o t i v a t e d t o p a r t i c i p a t e so t h e y c o u l d o b t a i n t h e f i n a l r e s u l t s o f t h e s t u d y . On t h e o t h e r hand, i t i s a l s o p o s s i b l e t h a t p a t i e n t s w i t h a l o w e r l e v e l o f e d u c a t i o n f e l t i n t i m i d a t e d o r overwhelmed a t t h e t a s k o f r e s p o n d i n g t o a w r i t t e n q u e s t i o n n a i r e . I n f u t u r e s t u d i e s , t h e r e s e a r c h e r may need t o c o l l e c t d a t a from t h e a c c e s s i b l e p o p u l a t i o n , w i t h o u t v i o l a t i n g agency s t a n d a r d s f o r r e s e a r c h , i n o r d e r t o p o s s i b l y e x p l a i n d i f f e r e n c e s between r e s p o n d e n t s and nonrespondents. R e l e v a n t v a r i a b l e s c o u l d i n c l u d e age, e d u c a t i o n a l l e v e l , employment s t a t u s , o c c u p a t i o n , and c u r r e n t s t a t e o f h e a l t h . W h i l e i t i s i m p o r t a n t t o o b t a i n s e l f - r e p o r t d a t a from p a t i e n t s , t h e t r a n s p l a n t e x p e r i e n c e has t h e p o t e n t i a l t o a f f e c t t h e f a m i l y members of t r a n s p l a n t p a t i e n t s . F u r t h e r r e s e a r c h i s needed t o a d d r e s s t h e e x p e r i e n c e of l i v i n g w i t h a k i d n e y -t r a n s p l a n t t h a t i n c l u d e s t h e p e r s p e c t i v e s o f f a m i l y members o f t h e s e p a t i e n t s . The f i n d i n g s o f t h i s s t u d y i n d i c a t e t h a t l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s e x p e r i e n c e m o d e r a t e l y low l e v e l s o f u n c e r t a i n t y . I n a d d i t i o n , u s i n g q u a l i t a t i v e methods may i n d i c a t e o t h e r a r e a s t h a t g e n e r a t e u n c e r t a i n t y t h a t a r e s p e c i f i c t o t h e t r a n s p l a n t e x p e r i e n c e . The f i n d i n g s of t h i s s t u d y i n d i c a t e t h a t i n d i v i d u a l s ' i n t e r p r e t a t i o n o f t h e i r s i t u a t i o n may e x p l a i n a v a r i e t y o f r e s p o n s e s t o i l l n e s s and i t s t r e a t m e n t . More c a r e f u l s t u d y o f t h e impact o f symptoms, e s p e c i a l l y t h o s e due t o t r e a t m e n t , i s 141 n e c e s s a r y and h o l d s promise f o r i d e n t i f y i n g approaches t o i n t e r v e n t i o n . F o r example, do p a t i e n t s i n t e r p r e t s i g n s o f r e j e c t i o n as a s i d e e f f e c t of immunosuppressive m e d i c a t i o n o r as a s i g n o f g r a f t f a i l u r e ? H e l p i n g p a t i e n t s t o c o r r e c t l y i n t e r p r e t symptoms may reduce t h e i r u n c e r t a i n t y and f a c i l i t a t e hope. E d u c a t i o n has been r e p o r t e d as b o t h i n v e r s e l y r e l a t e d and u n r e l a t e d t o u n c e r t a i n t y ( M i s h e l , 1984). A d d i t i o n a l s t u d i e s a r e needed t o c l a r i f y o t h e r v a r i a b l e s t h a t i n f l u e n c e p e r c e p t i o n s o f u n c e r t a i n t y f o r t r a n s p l a n t p a t i e n t s and o t h e r c h r o n i c a l l y i l l p a t i e n t p o p u l a t i o n s . A l t h o u g h t h e u n c e r t a i n t y i n s t r u m e n t used i n t h i s s t u d y i s a newer s c a l e , i t s r e l i a b i l i t y and v a l i d i t y a r e not f u l l y d e v e l o p e d . I n c l u d i n g t h e p r e s e n t s t u d y , t h i s i n s t r u m e n t has o n l y been t e s t e d f i v e t i m e s . F a c t o r a n a l y s i s i s one a pproach t h a t can be used t o e s t a b l i s h c o n s t r u c t v a l i d i t y . F u r t h e r i n v e s t i g a t i o n might i n c l u d e a c o n f i r m a t o r y f a c t o r a n a l y s i s by comparing t h e r e s u l t s o f t h i s a n a l y s i s w i t h t h e f a c t o r a n a l y s i s done by H i l t o n (1988a). I d e a l l y , t h e r e s h o u l d be a minimum of 10 s u b j e c t s p e r v a r i a b l e , t h u s , a sample of 600 s u b j e c t s would be r e q u i r e d f o r v e r s i o n t h r e e w i t h 60 items ( T a b a c h n i c k & F i d e l l , 1989). A s i m i l a r i n v e s t i g a t i o n c o u l d a l s o be performed w i t h t h e c o p i n g s c a l e . The e i g h t f a c t o r s t r u c t u r e used i n t h i s s t u d y has o n l y been r e p o r t e d by one o t h e r i n v e s t i g a t o r ( H e a r t h , 1990). T h i s f a c t o r s t r u c t u r e a l s o needs t o be v a l i d a t e d w i t h a l a r g e r sample o f p a t i e n t s . I n f o r m a t i o n i s needed about e f f e c t i v e c o p i n g s t r a t e g i e s i n o r d e r t o i n t e r v e n e w i t h p a t i e n t s i n p r e v e n t i o n , t r e a t m e n t , and 142 e d u c a t i o n r e g a r d i n g c o p i n g w i t h s t r e s s . I t may a l s o be i m p o r t a n t t o f o c u s on t h e e f f e c t i v e n e s s o f c o p i n g p a t t e r n s o r c o n s t e l l a t i o n s o f c o p i n g s t r a t e g i e s used as w e l l as i n d i v i d u a l c o p i n g s t r a t e g i e s . As L a z a r u s and Folkman (1984) s u g g e s t , c o p i n g e f f e c t i v e n e s s i n a s p e c i f i c e n c o u n t e r i s based on b o t h t h e p r o b l e m - f o c u s e d and e m o t i o n - r e g u l a t i n g f u n c t i o n s o f c o p i n g . E f f e c t i v e n e s s i n one sphere does not n e c e s s a r i l y mean t h a t an i n d i v i d u a l i s f u n c t i o n w e l l i n a l l a r e a s . A g a i n , t h i s would need t o be measured o v e r t i m e . T h e r e f o r e , f u r t h e r r e s e a r c h s h o u l d u t i l i z e measures o f c o p i n g t h a t c o n s i d e r m u l t i p l e outcomes. Three b a s i c k i n d s o f outcomes i d e n t i f i e d i n t h e s t r e s s and c o p i n g t h e o r y a r e work and s o c i a l f u n c t i o n i n g , l i f e s a t i s f a c t i o n , and s o m a t i c h e a l t h . T o g e t h e r t h e s e outcomes would p r o v i d e a comprehensive p i c t u r e o f c o p i n g . The f i n d i n g s o f t h i s s t u d y a l s o r a i s e s e v e r a l q u e s t i o n s about t h e a p p l i c a t i o n and t e s t i n g o f t h e s t r e s s and c o p i n g model w i t h o t h e r c h r o n i c a l l y i l l groups i n c l u d i n g d i a l y s i s p a t i e n t s , c a n c e r p a t i e n t s , and persons w i t h c o r o n a r y a r t e r y d i s e a s e . Do d i f f e r e n t groups o f c h r o n i c a l l y i l l i n d i v i d u a l s use s i m i l a r t y p e s o f c o p i n g s t r a t e g i e s t o manage u n c e r t a i n t y and t h e s t r e s s o f u n c e r t a i n t y ? F u r t h e r r e s e a r c h s h o u l d be co n d u c t e d t o a s c e r t a i n whether t h e r e l a t i o n s h i p between u n c e r t a i n t y and c o p i n g s t r a t e g i e s found among l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s a r e e v i d e n t i n o t h e r groups o f c h r o n i c a l l y i l l p e r s o n s . 143 REFERENCES Abram, H.S. (1972). The p s y c h o l o g y o f c h r o n i c i l l n e s s . J o u r n a l o f C h r o n i c D i s e a s e , 25, 659-664. B a l d r e e , K.S., Murphy, S.P., & Powers, M.J. (1982). S t r e s s i d e n t i f i c a t i o n and c o p i n g p a t t e r n s i n p a t i e n t s on h a e m o d i a l y s i s . N u r s i n g R e s e a r c h , 3_1(2), 107-112. B a r r e t t , B . J . , Vavasour, H., & P a r f r e y , P.S. (1989). The r e l a t i o n s h i p of a f f e c t t o p h y s i c a l symptoms i n r e n a l t r a n s p l a n t p a t i e n t s . 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American N e p h r o l o g y  N u r s i n g A s s o c i a t i o n J o u r n a l , 17.(6), 421-425. Wiener, C.L. (1975). The burden of r h e u m a t o i d a r t h r i t i s : T o l e r a t i n g t h e u n c e r t a i n t y . S o c i a l S c i e n c e & M e d i c i n e , 9, 97-104. W i k o f f , R.L., & M i l l e r , P. (1989). A n a l y s i s o f t h e J a l o w i e c C o p i n g S c a l e w i t h c a r d i a c p a t i e n t s ' spouses. N u r s i n g  R e s e a r c h , 3 8 ( 4 ) , 221-222. Y a r c h e s k i , A. (1988). U n c e r t a i n t y i n i l l n e s s and t h e f u t u r e . Western J o u r n a l of N u r s i n g R e s e a r c h , 10.( 4)/ 401-413. 153 Appendices Appendix A R e v i s e d J a l o w i e c Coping S c a l e REVISED JALOWIEC COPING SCALE T h i s q u e s t i o n n a i r e i s about how you cope w i t h s t r e s s and t e n s i o n , and how you h a n d l e s t r e s s f u l s i t u a t i o n s . In p a r t i c u l a r , I am i n t e r e s t e d i n how you have coped w i t h t h e s t r e s s o f y o u r c u r r e n t k i d n e y t r a n s p l a n t . L i s t e d on t h i s q u e s t i o n n a i r e a r e many d i f f e r e n t ways o f c o p i n g w i t h s t r e s s . F o r each c o p i n g s t r a t e g y , two q u e s t i o n s a r e asked: P a r t A: How o f t e n you have used t h a t p a r t i c u l a r s t r a t e g y t o cope w i t h t h e s t r e s s l i s t e d above; P a r t B: I f you have used t h a t s t r a t e g y , how h e l p f u l i t has been i n c o p i n g w i t h t h a t s t r e s s . INSTRUCTIONS P a r t A F o r each c o p i n g s t r a t e g y l i s t e d , c i r c l e a number from 0-3 i n P a r t A t o show how o f t e n you  have used t h a t s t r a t e g y t o cope w i t h t h e s t r e s s l i s t e d above. The c o d i n g f o r t h e numbers i n P a r t A i s as f o l l o w s : 0 = never used 1 = seldom used 2 = sometimes used 3 = o f t e n used P a r t B: F o r each s t r a t e g y t h a t you have used, c i r c l e a number from 0-3 i n P a r t B t o show how h e l p f u l  t h a t s t r a t e g y has been i n c o p i n g w i t h t h e s t r e s s l i s t e d above. The c o d i n g f o r t h e numbers i n P a r t B i s as f o l l o w s : 0 = not h e l p f u l 1 = s l i g h t l y h e l p f u l 2 = f a i r l y h e l p f u l 3 = v e r y h e l p f u l U1 tn HOW OFTEN P a r t A HAVE YOU USED EACH STRATEGY? P a r t B HOW HELPFUL HAS THE STRATEGY BEEN? COPING STRATEGIES Never Used Seldom Used Sometimes Used O f t e n Used Not S l i g h t l y F a i r l y H e l p f u l H e l p f u l H e l p f u l V e r y H e l p f u l L. 1. W o r r i e d about t h e p r o b l e m 0 1 2 3 0 1 2 3 2. Hoped t h a t t h i n g s would get b e t t e r 0 1 2 3 0 1 2 3 3. A t e o r smoked more than u s u a l 0 1 2 3 0 1 2 3 A. Thought o u t d i f f e r e n t ways t o h a n d l e t h e s i t u a t i o n 0 1 2 3 0 1 2 3 5. T o l d y o u r s e l f t h a t t h i n g s c o u l d be worse 0 1 2 3 0 1 2 3 6. E x e r c i s e d o r d i d some p h y s i c a l a c t i v i t y 0 1 2 3 0 1 2 3 7. T r i e d t o g e t away from the p r o b l e m f o r a w h i l e 0 1 2 3 0 1 2 3 8. Got mad and l e t o f f steam 0 2 3 0 1 2 3 9. P r e p a r e d ' f o r the w o r s t t h a t c o u l d happen 0 1 2 3 0 I 2 3 10. T r i e d t o put t h e p r o b l e m out o f y o u r mind and t h i n k o f s o m e t h i n g e l s e 0 1 2 3 0 1 2 3 11. T a l k e d the p r o b l e m o v e r w i t h f a m i l y o r f r i e n d s 0 1 2 3 0 1 2 3 12. A c c e p t e d the s i t u a t i o n because v e r y l i t t l e c o u l d be done 0 1 2 3 0 1 2 3 13. T r i e d t o l o o k a t the problem o b j e c t i v e l y and see a l l s i d e s 0 1 2 3 0 1 2 3 14. Daydreamed about a b e t t e r l i f e 0 1 2 3 0 1 2 3 U l as HOW OFTEN P a r t A HAVE YOU USED EACH STRATEGY? P a r t HOW HELPFUL HAS B THE STRATEGY BEEN? COPING STRATEGIES Never Used Seldom Used Sometimes Used O f t e n Used Not H e l p f u l S l i g h t l y H e l p f u l F a i r l y H e l p f u l V e r y H e l p f u l 15. T a l k e d t h e p r o b l e m o v e r w i t h a p r o f e s s i o n a l p e r s o n (such as a d o c t o r , n u r s e , m i n i s t e r , t e a c h e r , c o u n s e l l o r ) 0 2 3 0 1 2 3 16. T r i e d t o keep t h e s i t u a t i o n under-c o n t r o l 0 1 2 3 0 1 2 3 17. P r a y e d o r put y o u r t r u s t i n God 0 1 2 3 0 1 2 3 . 18. T r i e d t o g e t out o f the s i t u a t i o n 0 2 3 0 1 2 3 19. Kept y o u r f e e l i n g s t o y o u r s e l f 0 2 3 0 1 2 3 20. T o l d y o u r s e l f t h a t t h e pr o b l e m was someone e l s e ' s f a u l t 0 1 2 3 0 1 2 3 21. W a i t e d t o see what would happen 0 2 3 0 1 2 3 22. Wanted t o be a l o n e to t h i n k t h i n g s o u t 0 1 2 3 0 1 2 3 23. R e s i g n e d y o u r s e l f t o the s i t u a t i o n b e c a u s e t h i n g s l o o k e d h o p e l e s s 0 1 2 3 0 1 2 3 24. Took o u t y o u r t e n s i o n s on someone e l s e 0 1 2 3 0 1 2 3 25. T r i e d t o change t h e s i t u a t i o n 0 . 1 2 3 0 1 2 3 26. Used r e l a x a t i o n t e c h n i q u e s 0 1 2 3 0 1 2 3 27. T r i e d t o f i n d out more about the p r o b l e m 0 1 2 3 0 1 2 3 28. S l e p t more t h a n u s u a l 0 1 2 3 0 1 2 3 29. T r i e d t o h a n d l e t h i n g s one s t e p a t a t i m e 0 1 2 3 0 1 2 3 HOW OFTEN P a r t A HAVE YOU USED EACH STRATEGY? P a r t B HOW HELPFUL HAS THE STRATEGY KEEN? COPING STRATEGIES Never Used Seldom Used Sometimes Used O f t e n Used Not S l i g h t l y F a i r l y H e l p f u l H e l p f u l H e l p f u l . V e r y H e l p f u l 30. T r i e d t o keep y o u r l i f e as n o r m a l as p o s s i b l e and not l e t the p r o b l e m i n t e r f e r e 0 1 2 3 0 1 2 3 31. Thought about how you had h a n d l e d o t h e r p r o b l e m s i n the p a s t 0 1 2 3 0 1 2 3 32. T o l d y o u r s e l f n o t t o w o r r y because e v e r y t h i n g w o u l d p r o b a b l y work out f i n e 0 1 2 3 0 1 2 3 33. T r i e d t o work o u t a compromise 0 1 2 3 0 1 2 3 34. Had a d r i n k 0 1 2 3 0 1 2 3 35. L e t t i m e t a k e c a r e o f the p r o b l e m 0 1 2 3 0 1 2 3 36. T r i e d t o d i s t r a c t y o u r s e l f by d o i n g s o m e t h i n g t h a t you e n j o y 0 1 2 3 0 1 2 3 37. T o l d y o u r s e l f t h a t you c o u l d h a n d l e a n y t h i n g no m a t t e r how h a r d 0 1 2 3 0 1 2 3 38. Set up a s p e c i f i c p l a n of a c t i o n 0 1 2 3 0 1 2 3 39. T r i e d t o keep a s e n s e of humor 0 1 2 3 0 1 2 3 40. Put o f f f a c i n g up t o t h e p r o b l e m 0 1 2 3 0 1 2 3 41 . T r i e d t o keep y o u r f e e l i n g s under c o n t r o l 0 1 2 3 0 1 2 3 42. T a l k e d t h e p r o b l e m o v e r w i t h p e o p l e who had been i n a s i m i l a r s i t u a t i o n 0 1 2 3 0 1 2 3 43. P r a c t i c e d i n y o u r mind what had t o be done 0 1 2 3 0 1 2 3 HOW OFTEN P a r t A HAVE YOU USED EACH STRATEGY? P a r t B HOW HELPFUL HAS THE STRATEGY BEEN? COPING STRATEGIES Never Used Seldom Used Sometimes Used O f t e n Used Not S l i g h t l y F a i r l y H e l p f u l H e l p f u l H e l p f u l V e r y H e l p f u l 44. T r i e d t o keep busy and wotk h a r d e r 0 1 2 3 0 1 2 3 45. L e a r n e d s o m e t h i n g new i n o r d e r t o d e a l w i t h the p r o b l e m 0 1 2 3 0 1 2 3 46. D i d s o m e t h i n g i m p u l s i v e o r r i s k y 0 1 2 3 0 1 2 3 47. Thought a b o u t the good t h i n g s i n y o u r l i f e 0 1 2 3 0 1 2 3 48. T r i e d t o i g n o r e o r a v o i d the p r o b l e m 0 1 2 3 0 1 2 3 49. Compared y o u r s e l f w i t h o t h e r p e o p l e who were i n t h e same s i t u a t i o n 0 1 2 3 0 1 2 3 50. T r i e d t o t h i n k p o s i t i v e l y 0 1 2 3 0 1 2 3 51. Blamed y o u r s e l f f o r g e t t i n g i n t o s u c h a s i t u a t i o n 0 1 2 3 0 1 2 3 52. P r e f e r r e d t o work t h i n g s out y o u r s e l f 0 1 2 3 0 1 2 3 53. Took m e d i c a t i o n s 0 1 2 3 0 1 2 3 54. T r i e d t o see t h e good s i d e o f th e s i t u a t i o n 0 1 2 3 0 . 1 2 3 55. T o l d y o u r s e l f t h a t t h i s p r o b l e m was r e a l l y n o t t h a t i m p o r t a n t 0 1 2 3 0 1 2 3 56. A v o i d e d b e i n g w i t h p e o p l e 0 I 2 3 0 1 2 3 57. T r i e d t o improve y o u r s e l f i n some way so you c o u l d h a n d l e the s i t u a t i o n 0 2 3 0 1 2 3 P a r t A HOW OFTEN HAVE YOU USED EACH STRATEGY? P a r t B HOW HELPFUL HAS THE STRATEGY BEEN? \ COPING STRATEGIES Never Seldom Used Used Sometimes Used O f t e n Used Not H e l p f u l S l i g h t l y F a i r l y H e l p f u l H e l p f u l V e r y H e l p f u l 58. Wished tha-t the p r o b l e m would go 0 1 2 3 0 1 2 3 away 59. Depended on o t h e r s t o h e l p you out 0 1 2 3 0 I 2 3 60. T o l d y o u r s e l f t h a t you were j u s t h a v i n g some bad l u c k 0 1 2 3 0 1 2 3 I f t h e r e a r e any o t h e r t h i n g s you d i d to h a n d l e t h e s t r e s s m e n t i o n e d a t the b e g i n n i n g , t h a t a r e not on t h i s l i s t , p l e a s e w r i t e t h o s e c o p i n g s t r a t e g i e s i n t h e s p a c e s b s l o w . Then c i r c l e how o f t e n you have used e a c h s t r a t e g y , and how h e l p f u l e ach s t r a t e g y has been. 61 . 1 2 3 1 2 3 62. 1 2 3 1 2 3 63. 1 2 3 1 2 3 © 1987 Anne Jalowiec. Not to be reproduced without permission of the author. 162 Appendix B U n c e r t a i n t y S t r e s s S c a l e 163 Code Number: UNCERTAINTY STRESS SCALE Please read the following statements. To the ri g h t of each statement you w i l l see f i v e columns labelled from (1) No uncertainty, to (5) A great deal of uncertainty. C i r c l e the number that most c l o s e l y measures how you f e e l now about your uncertainties related to your kidney condition. To the f a r r i g h t of each statement you w i l l f i n d f i v e more columns of numbers. C i r c l e the number in the column that most c l o s e l y r e f l e c t s the  degree of stre s s you f e e l related to the uncertainty you i d e n t i f i e d . Please respond to every statement. There are no " r i g h t " or "wrong" answers. If any question does not apply and there i s no uncertainty about i t , please" c i r c l e "No uncertainty". PART A: PART B: No uncertainty Some uncertainty Moderate uncertainty Considerable uncertainty A great deal of uncertainty I am uncertain: 1) No stress 2) Some stress 3) Moderate s t r e s s 4) Considerable stress 5) A great deal of stress PART A PART B 1. Whether changes in my kidney condition w i l l be detected early 1 2 3 4 5 1 2 3 4 5 2. About the s t a b i l i t y of my kidney condition . . . . 1 2 3 4 5 1 2 3 4 5 3. What caused my kidney condition 1 2 3 4 5 1 2 3 4 5 4. Whether I w i l l be able to maintain my present l e v e l of functioning 1 2 3 4 5 1 2 3 4 5 5. About the present state of my kidney condition. 1 2 3 4 5 1 2 3 4 5 6. What questions to ask my medical s p e c i a l i s t s about my kidney condition 1 2 3 4 5 1 2 3 4 5 7. What questions to ask my doctors who are not s p e c i a l i s t s about my kidney condition 1 2 3 4 5 1 2 3 4 5 8. Whether changing my d i e t w i l l help my condition 1 2 3 4 5 1 2 3 4 5 9. How to make sense of what I am told about my kidney condition 1 2 3 4 5 1 2 3 4 5 10. About the effectiveness of my surgical treatments . 1 2 3 4 5 1 2 3 4 5 11. Whether my kidney condition i s under control . . 1 2 3 4 5 1 2 3 4 5 12. Whether my medical condition w i l l cause me to have symptoms 1 2 3 4 5 1 2 3 4 5 13. What to say to others about my kidney condition 1 2 3 4 5 1 2 3 4 5 14. About d i f f e r i n g explanations I have been given. 1 2 3 4 5 1 2 3 4 5 15. About my chances to be well 1 2 3 4 5 1 2 3 4 5 16. Whether my kidney condition w i l l be the,same in f i v e years 1 2 3 4 5 1 2 3 4 5 164 PART A; PART B: No uncertainty Some uncertainty Moderate uncertainty Considerable uncertainty A great deal of uncertainty No stress Some stress Moderate stress Considerable stress A great deal of stress I am uncertain: PART A PART B 17. Whether my symptoms can be controlled 1 2 3 4 5 1 2 3 4 5 18. Whether my kidney condition w i l l interfere with my a b i l i t y to do my usual a c t i v i t i e s 1 2 3 4 5 1 2 3 4 5 19. About my medical s p e c i a l i s t 1 s ( s 1 ) a b i l i t i e s . . . 1 2 3 4 5 1 2 3 4 5 20. About the a b i l i t i e s of my doctors who are not s p e c i a l i s t s 1 2 3 4 5 1 2 3 4 5 21. How to manage my symptoms 1 2 3 4 5 1 2 3 4 5 22. About choosing the medical and surgical treatments I nave had and am having ..; 1 2 3 4 5 1 2 3 4 5 23. Whether my kidney condition w i l l return 1 2 3 4 5 1 2 3 4 5 24. About the adequacy of the follow-up I am having 1 2 3 4 5 1 2 3 4 5 25. About my understanding of the treatments I have received and am receiving 1 2 3 4 5 1 2 3 4 5 26. How to approach health care workers about my care (for example, nurses, s o c i a l workers, d i e t i t i a n s , doctors) 1 2 3 4 5 1 2 3 4 5 27. Whether my kidney condition w i l l be involved A „ i n my death 1 2 3 4 5 1 2 3 4 5 28. Whether my treatments, other than any surgery I have had, have been effective 1 2 3 4 5 1 2 3 4 5 29. Whether my medical treatments, other than any surgery, eliminated my kidney condition 1 2 3 4 5 1 2 3 4 5 30. Whether any change in my appearance brought about by my kidney condition affects my re l a t i o n s h i p s with my family 1 2 3 4 5 1 2 3 4 5 31. Whether any change in my appearance brought -about by my kidney condition affects my re l a t i o n s h i p s outside my family 1 2 3 4 5 1 2 3 4 5 32. Whether my kidney condition w i l l a f f e c t my l i f e goals '.. 1 2 3 4 5 1 2 3 4 5 33. whether what I am doing about my kidney condition w i l l help me 1 2 3 4 5 1 2 3 4 5 34. Whether I can depend on test results as an indicator of my condition 1 2 3 4 5 1 2 3 4 5 35. Whether my kidney condition w i l l affect my , _ sex l i f e 1 2 3 4 5 1 2 3 4 5 36. Whether delays i n treatment w i l l influence my chances or successful recovery 1 2 3 4 5 1 2 3 4 5 165 PART A: PART B: 1) No uncertainty 2) Some uncertainty 3) Moderate uncertainty 4) Considerable uncertainty 5) A great deal of uncertainty 1) No stress '2) Some stress '3) Moderate stress 4) Considerable stress '5) A great deal of stress I am uncertain: 37. 38 . 39. 40. 41. 42 . 43 . 44 . 45. 46. 47. 48. 49. 50. 51. 52 . 53 . 54 . 55. 56. 57 . 58. 59. 60. About the seriousness of my kidney condition .. 1 2 3 4 5 Whether my s u r g i c a l treatments eliminated my kidney condition 1 2 3 4 5 About my a b i l i t y to handle my emotions related to the kidney condition 1 2 3 4 5 About the unpredictability of my symptoms 1 2 3 4 5 Whether eliminating my bad habits w i l l help my condition 1 2 3 4 5 Whether I w i l l have d i f f i c u l t y coping with my kidney condition 1 2 3 4 5 About the q u a l i t y of information I have 1 2 3 4 5 How long my symptoms w i l l last 1 2 2 Whether I am being to l d the truth about my kidney condition 1 Whether I would choose to have a l l the t r e a t -ments recommended to me 1 2 What "unusual symptoms" mean in terms of my kidney condition 1 2 Whether they might find something wrong when I go for a check-up 1 2 Whether I w i l l be well cared for by the nurses. 1 2 Whether I w i l l be well cared for by the health professionals other than the nurses 1 2 About the cause of my symptoms 1 2 Whether I can depend on people who are important to me to be there when I need them 1 4 4 4 4 4 4 4 4 4 4 4 4 4 5 5 5 5 5 5 5 5 5 5 5 5 Whether I can get health insurance 1 Whether I can get l i f e insurance 1 Whether I can get d i s a b i l i t y insurance 1 2 3 What symptoms I should be aware of 1 2 3 About choosing the treatments I w i l l have 1 2 3 4 5 Whether my following the treatment plan recommended to me w i l l help me 1 2 3 4 5 What to look for to check the state of my kidney condition 1 2 3 4 5 Whether treatments I w i l l be having w i l l eliminate the kidney condition 1 2 3 4 5 12 3 4 12 3 4 12 3 4 12 3 4 12 3 4 12 3 4 12 3 4 12 3 4 12 3 4 12 3 4 12 3 4 12 3 4 12 3 4 12 3 4 12 3 4 12 3 4 12 3 4 12 3 4 12 3 4 12 3 4 12 3 4 12 3 4 12 3 4 12 3 4 166 The following FIVE questions relate to levels of a p a r t i c u l a r f e e l i n g or perception. Please make a cross (X) on the l i n e which best indicates your l e v e l r i g h t now. 1. O v e r a l l , my uncertainty l e v e l about my kidney condition i s : 100 No uncertainty 5 0 Very high uncertainty O v e r a l l , the stress I f e e l from my uncertainty i s : 100 No stre s s 5 0 Very high stress O v e r a l l , the threat I fee l from my uncertainty i s : 100 No threat 5 0 Very high threat Some people f i n d that uncertainty can have po s i t i v e feelings (such as hope) associated with i t because of the p o s s i b i l i t y that things w i l l work out well. 4. Do you have any positive feelings because of your uncertainty? Yes Qj] No | | 5. I f yes, the le v e l of my positive feelings i s : 0 1 100 No p o s i t i v e 5 0 Very high p o s i t i v e f e e l i n g s feelings © 1989 B.A. H i l t o n . Not to be reproduced without permission of the author. Appendix C P a t i e n t I n f o r m a t i o n Sheet Below a r e a number of q u e s t i o n s . P l e a s e answer t h e s e q u e s t i o n s t h a t d e s c r i b e your c u r r e n t k i d n e y s i t u a t i o n . A r e you male o r female? What i s y o u r age? Were you on d i a l y s i s p r i o r t o t r a n s p l a n t ? Yes No C i r c l e t h e number of k i d n e y t r a n s p l a n t s you have had: 1 2 3 4 5 I f you have had more than one t r a n s p l a n t , s t a t e t h e r e a s o n f o r r e - t r a n s p l a n t a t i o n . A s i d e from k i d n e y d i s e a s e , do you have any o t h e r h e a l t h p r o b lems? I f s o , p l e a s e l i s t t h e s e below: Please indicate with a t i c k ( V ) : M a r i t a l status; S i n g l e S e p a r a t e d Widowed M a r r i e d D i v o r c e d Employment Status; C u r r e n t l y employed C u r r e n t l y unemployed R e t i r e d O t h e r ( p l e a s e s p e c i f y ) Education Level; Up t o Grade 10 Grade 11 Grade 12 C o l i e g e / U n i v e r s i t y Please state your: O c c u p a t i o n ; E t h n i c O r i g i n : This completes the questionnaire. Thank you for your p a r t i c i p a t i o n . 170 Appendix D Items i n Each F a c t o r I n d i c a t i n g F i v e Areas o f U n c e r t a i n t y Items i n Each F a c t o r I n d i c a t i n g F i v e A s p e c t s o f U n c e r t a i n t y on t h e U n c e r t a i n t y S t r e s s S c a l e F a c t o r I I n d e f i n i t e n e s s : 20 items (a =.93) not b e i n g c l e a r l y d e f i n e d o r p r e c i s e 1. Whether changes i n my k i d n e y c o n d i t i o n w i l l be d e t e c t e d e a r l y 2. About t h e s t a b i l i t y o f my k i d n e y c o n d i t i o n 4. Whether I w i l l be a b l e t o m a i n t a i n my p r e s e n t l e v e l o f f u n c t i o n i n g 5. About t h e p r e s e n t s t a t e o f my k i d n e y c o n d i t i o n 10. About t h e e f f e c t i v e n e s s o f my s u r g i c a l t r e a t m e n t s 11. Whether my k i d n e y c o n d i t i o n i s under c o n t r o l 12. Whether my m e d i c a l c o n d i t i o n w i l l cause me t o have symptoms 15. About my chances t o be w e l l 16. Whether my k i d n e y c o n d i t i o n w i l l be t h e same i n f i v e y e a r s 17. Whether my symptoms can be c o n t r o l l e d 18. Whether my k i d n e y c o n d i t i o n w i l l i n t e r f e r e w i t h my a b i l i t y t o do my u s u a l a c t i v i t i e s 21. How t o manage my symptoms 23. Whether my k i d n e y c o n d i t i o n w i l l r e t u r n 28. Whether my t r e a t m e n t s , o t h e r t h a n any s u r g e r y I have had, have been e f f e c t i v e 29. Whether my m e d i c a l t r e a t m e n t s , o t h e r t h a n any s u r g e r y , e l i m i n a t e d my k i d n e y c o n d i t i o n 37. About t h e s e r i o u s n e s s o f my k i d n e y c o n d i t i o n 38. Whether my s u r g i c a l t r e a t m e n t s e l i m i n a t e d my k i d n e y c o n d i t i o n 40. About t h e u n p r e d i c t a b i l i t y o f my symptoms 44. How l o n g my symptoms w i l l l a s t 60. Whether t r e a t m e n t s I w i l l be h a v i n g w i l l e l i m i n a t e t h e k i d n e y c o n d i t i o n 172 F a c t o r I I R e l i a b i l i t y o r D e p e n d a b i l i t y : 17 it e m s (a =.86) not b e i n g a b l e t o t r u s t i n achievement, a c c u r a c y , o r h o n e s t y 13. What t o say t o o t h e r s about my k i d n e y c o n d i t i o n 14. About d i f f e r i n g e x p l a n a t i o n s I have been g i v e n 19. About my m e d i c a l s p e c i a l i s t 1 s ( s ) a b i l i t i e s 20. About t h e a b i l i t i e s o f my d o c t o r s who a r e not s p e c i a l i s t s 22. About c h o o s i n g t h e m e d i c a l and s u r g i c a l t r e a t m e n t s I have had and am h a v i n g 24. About t h e adequacy o f t h e f o l l o w - u p I am h a v i n g 25. About t h e u n d e r s t a n d i n g o f t h e t r e a t m e n t s I have r e c e i v e d and am r e c e i v i n g 26. How t o approach h e a l t h c a r e workers about my c a r e ( f o r example, n u r s e s , s o c i a l w o r k e r s , d i e t i t i a n s , d o c t o r s ) 33. Whether what I am d o i n g about my k i d n e y c o n d i t i o n w i l l h e l p me 34. Whether I can depend on t e s t r e s u l t s as an i n d i c a t o r o f my c o n d i t i o n 43. About t h e q u a l i t y o f i n f o r m a t i o n I have 45. Whether I am b e i n g t o l d t h e t r u t h about my k i d n e y c o n d i t i o n 46. Whether I would choose t o have a l l t h e t r e a t m e n t s recommended t o me 49. Whether I w i l l be w e l l c a r e d f o r by t h e n u r s e s 50. Whether I w i l l be w e l l c a r e d f o r by t h e h e a l t h p r o f e s s i o n a l s o t h e r t h a n t h e nur s e s 58. Whether my f o l l o w i n g t h e t r e a t m e n t p l a n recommended t o me w i l l h e l p me 59. What t o l o o k f o r t o check t h e s t a t e o f my k i d n e y c o n d i t i o n F a c t o r I I I P r o b a b i l i t y : 8 items (a =.82) i n f e r s l i k e l i h o o d o r chance of something happening o r b e i n g t r u e 27. Whether my k i d n e y c o n d i t i o n w i l l be i n v o l v e d i n my d e a t h 36. Whether d e l a y s i n t r e a t m e n t w i l l i n f l u e n c e my chances of s u c c e s s f u l r e c o v e r y 39. About t h e a b i l i t y t o handle my emotions r e l a t e d t o t h e k i d n e y c o n d i t i o n 41. Whether e l i m i n a t i n g my bad h a b i t s w i l l h e l p my c o n d i t i o n 42. Whether I w i l l have d i f f i c u l t y c o p i n g w i t h my k i d n e y c o n d i t i o n 47. What "unu s u a l symptoms" mean i n terms o f my k i d n e y c o n d i t i o n 48. . Whether t h e y might f i n d something wrong when I go f o r a check-up 57. About c h o o s i n g t h e t r e a t m e n t s I w i l l have F a c t o r IV D o u b t f u l : 7 items (a =.68) h o l d i n g q u e s t i o n a b l e , d i s t r u s t i n g , h e s i t a t i n g t o b e l i e v e , b e i n g u n d e c i d e d i n o p i n i o n o r b e l i e f 3. What caused my k i d n e y c o n d i t i o n 6. What q u e s t i o n s t o ask my m e d i c a l s p e c i a l i s t s about my k i d n e y c o n d i t i o n 7. What q u e s t i o n s t o ask my d o c t o r s who a r e not s p e c i a l i s t s about my k i d n e y c o n d i t i o n 8. Whether c h a n g i n g my d i e t w i l l h e l p my c o n d i t i o n 9. How t o make sense o f what I am t o l d about my k i d n e y c o n d i t i o n 51. About t h e cause o f my symptoms 56. What symptoms I s h o u l d be aware of F a c t o r V I n d e t e r m i n a t e n e s s : 8 items (a =.80) not b e i n g f i x e d o r c l e a r , b e i n g u n s e t t l e d 30. Whether any change i n my appearance brou g h t about by my k i d n e y c o n d i t i o n a f f e c t s my r e l a t i o n s h i p s w i t h my f a m i l y 31. Whether any change i n my appearance brou g h t about by my k i d n e y c o n d i t i o n a f f e c t s my r e l a t i o n s h i p s o u t s i d e my f a m i l y 32. Whether my k i d n e y c o n d i t i o n w i l l a f f e c t my l i f e g o a l s 35. Whether my k i d n e y c o n d i t i o n w i l l a f f e c t my sex l i f e 52. Whether I can depend on p e o p l e who a r e i m p o r t a n t t o me t o be t h e r e when I need them 53. Whether I can g e t h e a l t h i n s u r a n c e 54. Whether I can g e t l i f e i n s u r a n c e 55. Whether I can g e t d i s a b i l i t y i n s u r a n c e B a r b a r a Ann H i l t o n , 1988 Not t o c o p i e d w i t h o u t p e r m i s s i o n of t h e a u t h o r . Appendix E E i g h t C oping S t y l e s on t h e Rev J a l o w i e c C oping S c a l e E i g h t C o p i n g S t y l e s on t h e R e v i s e d J a l o w i e c C o p i n g S c a l e 1. C o n f r o n t i v e C oping S t y l e : 10 items (ot u =.88, a e =.87) c o n f r o n t t h e s i t u a t i o n , f a c e up t o t h e problem, c o n s t r u c t i v e p r o b l e m - s o l v i n g 4. Thought out d i f f e r e n t ways t o h a n d l e t h e s i t u a t i o n 13. T r i e d t o l o o k a t the problem o b j e c t i v e l y and see a l l s i d e s 16. T r i e d t o keep t h e s i t u a t i o n under c o n t r o l 25. T r i e d t o change t h e s i t u a t i o n 27. T r i e d t o f i n d out more about t h e problem 29. T r i e d t o h andle t h i n g s one s t e p a t a t i m e 33. T r i e d t o work out a compromise 38. Set up a s p e c i f i c p l a n of a c t i o n 43. P r a c t i s e d i n y o u r mind what had t o be done 45. L e a r n e d something new i n o r d e r t o d e a l w i t h t h e problem 2. E v a s i v e C o p i n g S t y l e : 13 items ( a u =.89, a e =.85) e v a s i v e and a v o i d a n t a c t i v i t i e s 7. T r i e d t o g e t away from t h e problem f o r a w h i l e 10. T r i e d t o put t h e problem out o f y o u r mind and t h i n k o f something e l s e 14. Daydreamed about a n o t h e r l i f e 18. T r i e d t o g e t out o f t h e s i t u a t i o n 20. T o l d y o u r s e l f t h a t t h e problem was someone e l s e ' s f a u l t 21. W a i t e d t o see what would happen 28. S l e p t more t h a n u s u a l 35. L e t t i m e t a k e c a r e o f t h e problem 40. Put o f f f a c i n g up t o t h e problem 48. T r i e d t o i g n o r e o r a v o i d t h e problem 55. T o l d y o u r s e l f t h a t t h i s problem was r e a l l y n ot t h a t i m p o r t a n t 56. A v o i d e d b e i n g w i t h p e o p l e 58. Wished t h a t t h e problem would go away O p t i m i s t i c C o p i n q S t y l e : 9 items ( a u =.87, a e =.86) p o s i t i v e t h i n k i n g , p o s i t i v e o u t l o o k , p o s i t i v e c omparisons 2. Hoped t h a t t h i n g s would g e t b e t t e r 5. T o l d y o u r s e l f t h a t t h i n g s c o u l d be worse 30. T r i e d t o keep y o u r l i f e as normal as p o s s i b l e and not l e t p roblem i n t e r f e r e 32. T o l d y o u r s e l f not t o w o r r y because e v e r y t h i n g would p r o b a b l y work out f i n e 39. T r i e d t o keep a sense o f humour 47. Thought about t h e good t h i n g s i n y o u r l i f e 49. Compared y o u r s e l f w i t h o t h e r p e o p l e who were i n t h e same s i t u a t i o n 50. T r i e d t o t h i n k p o s i t i v e l y 54. T r i e d t o see t h e good s i d e o f t h e s i t u a t i o n F a t a l i s t i c C o p i n g S t y l e : 4 items ( a u =.73, a e =.54) p e s s i m i s m , h o p e l e s s n e s s , f e e l i n g o f l i t t l e c o n t r o l o v e r t h e s i t u a t i o n 9. P r e p a r e d f o r t h e w o r s t t h a t c o u l d happen 12. A c c e p t e d t h e s i t u a t i o n because v e r y l i t t l e c o u l d be done 23. R e s i g n e d y o u r s e l f t o t h e s i t u a t i o n because t h i n g s l o o k e d h o p e l e s s 60. T o l d y o u r s e l f t h a t you were j u s t h a v i n g some bad l u c k Emotive C o p i n g S t y l e : 5 items (ccu =.76, a e =.72) e x p r e s s i n g and r e l e a s i n g e motions, v e n t i l a t i n g f e e l i n g s 1. W o r r i e d about t h e problem 8. Got mad and l e t o f f steam 24. Took out y o u r t e n s i o n s on someone e l s e 46. D i d something i m p u l s i v e o r r i s k y 51. Blamed y o u r s e l f f o r g e t t i n g i n t o such a s i t u a t i o n 177 6. P a l l i a t i v e C o ping S t y l e : 7 items ( a u =.11, a e =.62) t r y i n g t o reduce o r c o n t r o l d i s t r e s s by making t h e p e r s o n f e e l b e t t e r 3. A t e o r smoked more th a n u s u a l 6. E x e r c i s e d o r d i d some p h y s i c a l a c t i v i t y 26 . Used r e l a x a t i o n t e c h n i q u e s 34. Had a d r i n k 36. T r i e d t o d i s t r a c t y o u r s e l f by d o i n g something t h a t you e n j o y 44 . T r i e d t o keep busy and work h a r d e r 53. Took m e d i c a t i o n s 7. S u p p o r t a n t C o p i n g S t y l e : 5 items (cru =.87, a e =.75) u s i n g s u p p o r t systems ( p e r s o n a l , p r o f e s s i o n a l , s p i r i t u a l ) 11. T a l k e d t h e problem o v e r w i t h f a m i l y o r f r i e n d s 15. T a l k e d t h e problem o v e r w i t h a p r o f e s s i o n a l p e r s o n (such as a d o c t o r , n u r s e , m i n i s t e r , t e a c h e r , c o u n s e l l o r ) 17. P r a y e d o r put t r u s t i n God 42. T a l k e d t h e problem o v e r w i t h p e o p l e who had been i n a s i m i l a r s i t u a t i o n 59. Depended on o t h e r s t o h e l p you out 8. S e l f - R e l i a n t S t y l e : 7 items (ocu =.82, ae =.82) depending on s e l f r a t h e r t h a n on o t h e r s 19. Kept y o u r f e e l i n g s t o y o u r s e l f 22. Wanted t o be a l o n e t o t h i n k t h i n g s out 31. Thought about how you had h a n d l e d o t h e r problems i n t h e p a s t 37. T o l d y o u r s e l f t h a t you c o u l d h a n d l e a n y t h i n g no m a t t e r how h a r d 41. T r i e d t o keep your f e e l i n g s under c o n t r o l 52. P r e f e r r e d t o work t h i n g s out y o u r s e l f 57. T r i e d t o improve y o u r s e l f i n some way so you c o u l d h a n d l e t h e s i t u a t i o n Anne J a l o w i e c , J u l y 1987 Not t o be c o p i e d w i t h o u t p e r m i s s i o n o f t h e a u t h o r . Note. a = u a = a l p h a f o r use s u b s c a l e a l p h a f o r e f f e c t i v e n e s s s u b s c a l e Appendix F I n f o r m a t i o n L e t t e r 180 Appendix G Request f o r Study R e s u l t s 181 LONG-TERM KIDNEY TRANSPLANT STUDY I f you a r e i n t e r e s t e d i n r e c e i v i n g t h e f i n a l r e s u l t s o f t h i s s t u d y , p l e a s e t e a r o f f t h e bottom p o r t i o n and m a i l i t w i t h y o u r q u e s t i o n n a i r e package i n t h e s e l f - a d d r e s s e d stamped e n v e l o p e p r o v i d e d . These forms w i l l be s e p a r a t e d from t h e q u e s t i o n n a i r e a t t h e t i m e t h e env e l o p e a r r i v e s . P l e a s e send t h e f i n a l r e s u l t s o f t h i s s t u d y t o : NAME: ADDRESS: POSTAL CODE: Appendix H Reminder/Thank You L e t t e r Appendix I Rank O r d e r i n g o f Coping S t r a t e g y Use R e p o r t e d by Long-Term K i d n e y T r a n s p l a n t P a t i e n t s 185 Rank O r d e r i n g o f Coping S t r a t e g y Use R e p o r t e d by Long-Term K i d n e y T r a n s p l a n t P a t i e n t s C o p i n g S t r a t e g y Mean Rank T r i e d t o keep y o u r l i f e as normal as p o s s i b l e and not l e t problem i n t e r f e r e (OP) 2.7 1 T r i e d t o t h i n k p o s i t i v e l y (OP) 2.7 1 T r i e d t o keep a sense o f humour (OP) 2.6 3 Thought about t h e good t h i n g s i n your l i f e (OP) 2.3 4 T r i e d t o f i n d out more about t h e problem (CO) 2.3 4 T r i e d t o h a n d l e t h i n g s one s t e p a t a t i m e (CO) 2.3 4 T r i e d t o l o o k a t t h e problem o b j e c t i v e l y and see a l l s i d e s (CO) 2.3 4 T r i e d t o see t h e good s i d e o f t h e s i t u a t i o n (OP) 2.3 4 T o l d y o u r s e l f t h a t t h i n g s c o u l d be worse (OP) 2.2 9 T r i e d t o d i s t r a c t y o u r s e l f by d o i n g something t h a t you e n j o y (PA) 2.2 9 T r i e d t o keep busy and work h a r d e r (PA) 2.2 9 T r i e d t o keep t h e s i t u a t i o n under c o n t r o l (CO) 2.2 9 T r i e d t o keep y o u r f e e l i n g s under c o n t r o l (SR) 2.2 9 A c c e p t e d t h e s i t u a t i o n because v e r y l i t t l e c o u l d be done (FA) 2.1 14 T o l d y o u r s e l f t h a t you c o u l d h a n d le a n y t h i n g no m a t t e r how h a r d (SR) 2.1 14 E x e r c i s e d o r d i d some p h y s i c a l a c t i v i t y (PA) 2.0 16 Hoped t h a t t h i n g s would g e t b e t t e r (OP) 2.0 16 Kept y o u r f e e l i n g s t o y o u r s e l f (SR) 2.0 16 P r e f e r r e d t o work t h i n g s out y o u r s e l f (SR) 2.0 16 Thought out d i f f e r e n t ways t o handle t h e s i t u a t i o n (CO) 2.0 16 T o l d y o u r s e l f not t o w o r r y because e v e r y t h i n g would p r o b a b l y work out f i n e (OP) 2.0 16 T r i e d t o put t h e problem out o f your mind and t h i n k o f something e l s e (EV) 2.0 16 P r a c t i s e d i n y o u r mind what had t o be done (CO) 1.9 2 3 Thought about how you had h a n d l e d o t h e r problems i n t h e p a s t (SR) 1.9 23 T r i e d t o improve y o u r s e l f i n some way so you c o u l d h a n d l e t h e s i t u a t i o n (SR) 1.8 25 Wanted t o be a l o n e t o t h i n k t h i n g s out (SR) 1.8 25 Compared y o u r s e l f w i t h o t h e r p e o p l e who were i n t h e same s i t u a t i o n (OP) 1.7 27 T a l k e d t h e problem o v e r w i t h f a m i l y o r f r i e n d s (SU) 1.7 27 T r i e d t o change t h e s i t u a t i o n (CO) 1.7 27 Daydreamed about a n o t h e r l i f e (EV) 1.6 30 L e a r n e d something new i n o r d e r t o d e a l w i t h t h e p r o blem (CO) 1.6 30 Set up a s p e c i f i c p l a n of a c t i o n (CO) 1.6 30 W a i t e d t o see what would happen (EV) 1.6 30 Wished t h a t t h e problem would go away (EV) 1.6 30 186 Rank O r d e r i n g of Coping S t r a t e g y Use R e p o r t e d by Long-Term K i d n e y T r a n s p l a n t P a t i e n t s ( c o n t i n u e d ) C o p i n g S t r a t e g y Mean Rank W o r r i e d about t h e problem (EM) 1.6 30 L e t t i m e t a k e c a r e o f t h e problem (EV) 1.5 36 P r a y e d o r p u t t r u s t i n God (SU) 1.5 36 Took m e d i c a t i o n s (PA) 1.5 36 T r i e d t o work out a compromise (CO) 1.5 36 Used r e l a x a t i o n t e c h n i q u e s (PA) 1.5 36 Got mad and l e t o f f steam (EM) 1.4 41 P r e p a r e d f o r t h e w o r s t t h a t c o u l d happen (FA) 1.4 41 S l e p t more t h a n u s u a l (EV) 1.4 41 T a l k e d t h e problem o v e r w i t h p e o p l e who had been i n a s i m i l a r s i t u a t i o n (SU) 1.4 41 T a l k e d t h e problem o v e r w i t h a p r o f e s s i o n a l p e r s o n (such as a d o c t o r , n u r s e , m i n i s t e r , t e a c h e r , c o u n s e l l o r ) (SU) 1.4 41 Depended on o t h e r s t o h e l p you out (SU) 1.3 46 T r i e d t o g e t away from t h e problem f o r a w h i l e (EV) 1.3 46 Took out y o u r t e n s i o n s on someone e l s e (EM) 1.2 48 A v o i d e d b e i n g w i t h p e o p l e (EV) 1.1 49 T o l d y o u r s e l f t h a t t h i s problem was r e a l l y n o t t h a t i m p o r t a n t (EV) 1.1 49 T r i e d t o i g n o r e o r a v o i d t h e problem (EV) 1.1 49 D i d something i m p u l s i v e o r r i s k y (EM) 1.0 52 Put o f f f a c i n g up t o t h e problem (EV) 1.0 52 A t e o r smoked more t h a n u s u a l (PA) 0.9 54 T r i e d t o g e t out o f t h e s i t u a t i o n (EV) 0.8 55 Blamed y o u r s e l f f o r g e t t i n g i n t o such a s i t u a t i o n (EM) 0.7 56 R e s i g n e d y o u r s e l f t o t h e s i t u a t i o n because t h i n g s l o o k e d h o p e l e s s (FA) 0.7 56 T o l d y o u r s e l f t h a t you were j u s t h a v i n g some bad l u c k (FA) 0.7 56 Had a d r i n k (PA) 0.6 59 T o l d y o u r s e l f t h a t t h e problem was someone e l s e ' s f a u l t (EV) 0.4 60 Note: (CO) = C o n f r o n t i v e c o p i n g (EV) = E v a s i v e c o p i n g (OP) = O p t i m i s t i c c o p i n g (FA) = F a t a l i s t i c c o p i n g (EM) = Emotive c o p i n g (PA) = P a l l i a t i v e c o p i n g (SU) = S u p p o r t a n t c o p i n g (SR) = S e l f - R e l i a n t c o p i n g 187 Appendix J Rank O r d e r i n g o f Coping S t r a t e g y E f f e c t i v e n e s s R e p o r t e d by Long-Term K i d n e y T r a n s p l a n t P a t i e n t s 188 Rank O r d e r i n g o f C oping S t r a t e g y E f f e c t i v e n e s s R e p o r t e d by Long-Term K i d n e y T r a n s p l a n t P a t i e n t s C o p i n g S t r a t e g y Mean Rank T r i e d t o keep a sense of humour (OP) 2 .5 1 T r i e d t o keep y o u r l i f e as normal as p o s s i b l e and not l e t problem i n t e r f e r e (OP) 2 .4 2 T r i e d t o t h i n k p o s i t i v e l y (OP) 2 .4 2 Thought about t h e good t h i n g s i n y o u r l i f e (OP) 2 .2 4 T r i e d t o d i s t r a c t y o u r s e l f by d o i n g something t h a t you e n j o y (PA) 2 .2 4 T r i e d t o h a n d l e t h i n g s one s t e p a t a t i m e (CO) 2 .2 4 T r i e d t o l o o k a t t h e problem o b j e c t i v e l y and see a l l s i d e s (CO) 2 .2 4 T r i e d t o see t h e good s i d e of t h e s i t u a t i o n (OP) 2 .2 4 E x e r c i s e d o r d i d some p h y s i c a l a c t i v i t y (PA) 2 . 1 9 T a l k e d t h e problem o v e r w i t h f a m i l y o r f r i e n d s (SU) 2 . 1 9 T r i e d t o f i n d out more about t h e problem (CO) 2 . 1 9 P r a y e d o r p u t t r u s t i n God (SU) 2 .0 12 Thought about how you had h a n d l e d o t h e r problems i n t h e p a s t (SR) 2 .0 12 Thought out d i f f e r e n t ways t o h a n d le t h e s i t u a t i o n (CO) 2 .0 12 T o l d y o u r s e l f t h a t t h i n g s c o u l d be worse (OP) 2 .0 12 T o l d y o u r s e l f t h a t you c o u l d h a n d le a n y t h i n g no m a t t e r how h a r d (SR) 2 .0 12 Took m e d i c a t i o n s (PA) 2 .0 12 T r i e d t o improve y o u r s e l f i n some way so you c o u l d h a n d l e t h e s i t u a t i o n (SR) 2 .0 12 T r i e d t o keep busy and work h a r d e r (PA) 2 .0 12 T r i e d t o keep t h e s i t u a t i o n under c o n t r o l (CO) 2 .0 12 Used r e l a x a t i o n t e c h n i q u e s (PA) 2 .0 12 A c c e p t e d t h e s i t u a t i o n because v e r y l i t t l e c o u l d be done (FA) 1 .9 22 P r a c t i s e d i n y o u r mind what had t o be done (CO) 1 .9 22 Set up a s p e c i f i c p l a n o f a c t i o n (CO) 1 .9 22 T a l k e d t h e problem o v e r w i t h a p r o f e s s i o n a l p e r s o n (such as a d o c t o r , n u r s e , m i n i s t e r , t e a c h e r , c o u n s e l l o r ) (SU) 1 .9 22 T a l k e d t h e problem o v e r w i t h p e o p l e who had been i n a s i m i l a r s i t u a t i o n (SU) 1 .9 22 L e a r n e d something new i n o r d e r t o d e a l w i t h t h e p r o blem (CO) 1 .8 27 P r e f e r r e d t o work t h i n g s out y o u r s e l f (SR) 1 .8 27 T o l d y o u r s e l f not t o w o r r y because e v e r y t h i n g would p r o b a b l y work out f i n e (OP) 1 .8 27 Compared y o u r s e l f w i t h o t h e r p e o p l e who were i n t h e same s i t u a t i o n (OP) 1 .7 30 T r i e d t o change t h e s i t u a t i o n (CO) 1 .7 30 T r i e d t o keep y o u r f e e l i n g s under c o n t r o l (SR) 1 .7 30 189 Rank O r d e r i n g o f Coping S t r a t e g y E f f e c t i v e n e s s R e p o r t e d by Long-Term K i d n e y T r a n s p l a n t P a t i e n t s ( c o n t i n u e d ) C o p i n g S t r a t e g y Mean Rank Wanted t o be a l o n e t o t h i n k t h i n g s out (SR) 1. .7 30 Hoped t h a t t h i n g s would g e t b e t t e r (OP) 1. .6 34 P r e p a r e d f o r t h e w o r s t t h a t c o u l d happen (FA) 1. ,6 34 T r i e d t o g e t away from t h e problem f o r a w h i l e (EV) 1. .6 34 T r i e d t o put t h e problem out o f y o u r mind and t h i n k o f something e l s e (EV) 1. ,6 34 T r i e d t o work out a compromise (CO) 1. ,6 34 Depended on o t h e r s t o h e l p you out (SU) 1. .5 39 S l e p t more t h a n u s u a l (EV) 1. .5 39 L e t t i m e t a k e c a r e o f t h e problem (EV) 1. ,4 41 Daydreamed about a n o t h e r l i f e (EV) 1. ,3 42 D i d something i m p u l s i v e o r r i s k y (EM) 1. .3 42 Had a d r i n k (PA) 1. .3 42 T o l d y o u r s e l f t h a t t h i s problem was r e a l l y n o t t h a t i m p o r t a n t (EV) 1. .3 42 Wa i t e d t o see what would happen (EV) 1. .3 42 T r i e d t o g e t out o f t h e s i t u a t i o n (EV) 1. ,2 47 Kept y o u r f e e l i n g s t o y o u r s e l f (SR) 1. . 1 48 Got mad and l e t o f f steam (EM) 1. ,0 49 A v o i d e d b e i n g w i t h p e o p l e (EV) 0. .9 50 T r i e d t o i g n o r e o r a v o i d t h e problem (EV) 0. .9 50 A t e o r smoked more t h a n u s u a l (PA) 0. .8 52 T o l d y o u r s e l f t h a t you were j u s t h a v i n g some bad l u c k (FA) 0, .8 52 W o r r i e d about t h e problem (EM) 0. .8 52 R e s i g n e d y o u r s e l f t o t h e s i t u a t i o n because t h i n g s l o o k e d h o p e l e s s (FA) 0, .7 55 Put o f f f a c i n g up t o t h e problem (EV) 0, .7 55 Wished t h a t t h e problem would go away (EV) 0, .6 57 Took out y o u r t e n s i o n s on someone e l s e (EM) 0, .5 58 Blamed y o u r s e l f f o r g e t t i n g i n t o such a s i t u a t i o n (EM) 0, .4 60 T o l d y o u r s e l f t h a t t h e problem was someone e l s e ' s f a u l t (EV) 0 .4 60 Note: (CO) = C o n f r o n t i v e c o p i n g (EV) = E v a s i v e c o p i n g (OP) = O p t i m i s t i c c o p i n g (FA) = F a t a l i s t i c c o p i n g (EM) = Emotive c o p i n g (PA) = P a l l i a t i v e c o p i n g (SU) = S u p p o r t a n t c o p i n g (SR) = S e l f - R e l i a n t c o p i n g Appendix K A d d i t i o n a l Ways of Coping and T h e i r E f f e c t i v e n e s s 191 A d d i t i o n a l Ways o f Coping and T h e i r E f f e c t i v e n e s s A d d i t i o n a l Ways B e h a v i o u r Frequency Mean  Use E f f e c t i v e n e s s • A v o i d t a l k i n g w i t h f e l l o w t r a n s p l a n t p a t i e n t s 1 3.0 3 .0 Be honest about t h e s i t u a t i o n 1 3.0 3 .0 C r a f t s and ho b b i e s 4 3.0 3 .0 Do y o u r b e s t as t h e .0 a s i t u a t i o n a l l o w s 2 3.0 3 E n j o y each day 1 3.0 3 .o a F o l l o w e d t h e t r e a t m e n t 1 3.0 3 .0 L i s t e n t o my d o c t o r and obey o r d e r s 2 3.0 3 .0 T a l k e d about f e e l i n g s o f d e a t h and d y i n g w i t h o t h e r s 1 3.0 3 .0 T o l d s e l f how f o r t u n a t e I was 1 3.0 3 .0 T r i e d t o meet t h e problem head on 1 3.0 3 .0 T r u s t e d my k i d n e y f u n c t i o n / t r u s t e d k i d n e y t o work w e l l 1 3.0 3 .0 Watch TV 1 3.0 3 .0 Get absorbed i n a good movie 1 2.0 3 .0 P l a n f o r a f u t u r e t h a t I w i l l n e ver see 1 2.0 3 .0 C r y 2 2.5 2 .5 Keep a j o u r n a l 2 2.5 2 .5 T r u s t e d m e d i c a t i o n s 1 3.0 2 .0 What q u e s t i o n s t o ask d o c t o r 1 3.0 2 .0 Changed o c c u p a t i o n 1 2.0 2 .0 B e t t e r d i e t 1 2.0 2 .0 Th i n k t o o much 1 3.0 1 .0 S i n k i n t o d e p r e s s i o n 2 2.0 1 .0 T r i e d t o k i l l m y s e l f 1 2.0 1 .0 T r i e d v a r i o u s t r e a t m e n t s 1 2.0 1 .0 Smoked m a r i j u a n a 1 1.0 1 .0 Note. a mode was s u b s t i t u t e d f o r m i s s i n g d a t a Appendix L New P a t i e n t s S t a r t i n g Treatment by Age and Sex, Canada 1989 New P a t i e n t s S t a r t i n g Treatment by Age Group and Sex, Canada, 1989 Number of P a t i e n t s 500 400 300 200 100 0-14 15-44 45-64 65-74 75+ Age Group Male ;:;!;! Female Note. From Canadian Organ Replacement R e g i s t e r (1989) 1987 Annual R e p o r t . O n t a r i o : H o s p i t a l M e d i c a l Records I n s t i t u t e . Appendix M Frequency of K i d n e y T r a n s p l a n t O p e r a t i o n s Canada, 1981 - 1987 195 Frequency o f K i d n e y T r a n s p l a n t O p e r a t i o n s , Canada 1981 - 1987 Age Group T o t a l 0-14 15-24 25-34 35-44 45-54 55-59 60-64 65+ 3324 207 467 775 100% 6.2 14.1 23.3 1 s t T r a n s p l a n t 3079 92.6 2nd T r a n s p l a n t 228 6.9 3 r d T r a n s p l a n t 13 0.4 4 t h T r a n s p l a n t 3 0.1 5 t h T r a n s p l a n t 1 0.0 746 641 274 150 64 22.4 19.3 8.2 4.5 2.0 T o t a l T r a n s p l a n t s 3324 100.0% Note. From Canadian Organ Replacement R e g i s t e r (1989). 1987 Annual R e p o r t . O n t a r i o : H o s p i t a l M e d i c a l Records I n s t i t u t e . 196 Appendix N Causes of G r a f t F a i l u r e i n R e g i s t e r e d A d u l t K i d n e y P a t i e n t s Canada, 1981 - 1988 Causes of G r a f t F a i l u r e i n R e g i s t e r e d A d u l t P a t i e n t s , Canada 1981 - 1988 Cause Frequency P e r c e n t H y p e r a c u t e R e j e c t i o n 46 5.7 R e j e c t i o n on l s t / S t o p p e d 1 s t 541 66.6 R e c u r r e n c e of P r i m a r y Renal D i s e a s e 21 2.6 V a s c u l a r Problem 47 5.8 U r e t e r O p e r a t i v e Problem 12 1.5 I n f e c t i o n o f G r a f t 19 2.3 Removal of G r a f t 3 0.4 V a s c u l a r Thrombosis 33 4.0 O t h e r Reasons 72 8.9 T o t a l 812 100.0 Note. From Canadian Organ Replacement R e g i s t e r (1990). 1988 Annual R e p o r t . O n t a r i o : H o s p i t a l M e d i c a l Records I n s t i t u t e . Appendix 0 K i d n e y T r a n s p l a n t O p e r a t i o n s Performed by Year and L o c a t i o n B r i t i s h C o lumbia, 1968 - 1987 199 K i d n e y T r a n s p l a n t O p e r a t i o n s B r i t i s h 1968 Performed By Year and L o c a t i o n Columbia - 1987 Year A d u l t T r a n s p l a n t C e n t r e T o t a l Study O p e r a t i o n H o s p i t a l A H o s p i t a l B By Year Sample CD LRD CD LRD 1968 2 2 1969 6 1 7 1970 12 12 2 1971 9 9 1 1972 7 7 3 1973 16 16 1 1974 18 18 3 1975 17 1 18 2 1976 15 1 16 1977 17 17 4 1978 25 1 26 5 1979 25 25 3 1980 19 19 - 5 1981 25 1 26 1 1982 27 2 29 9 1983 28 2 30 5 1984 27 2 29 8 1985 29 1 30 12 1986 37 48 3 88 6 1987 37 91 5 133 18 395 12 139 8 554 88 Note. R. C v i t a n o v i c , p e r s o n a l communication, May 09, 1990. CD = C a d a v e r i c Donor; LRD = L i v i n g - R e l a t e d Donor Appendix P Demographic V a r i a b l e s and L e v e l o f U n c e r t a i n t y 201 Demographic V a r i a b l e s and L e v e l of U n c e r t a i n t y Low U n c e r t a i n t y (n = 22) H i g h U n c e r t a i n t y (n = 7) Range Mean SD Range Mean SD T o t a l U n c e r t a i n t y 60-74 66.2 4.2 175-220 197.6 17.7 Age a t Time o f Study 31-65 47.9 10.4 32-51 39.7 6.2 T r a n s p l a n t Date 3.2-18.6 10.0 5.1 3.5-13.5 9.1 3.3 n n Donor Type C a d a v e r i c L i v i n g - R e l a t e d 18 4 7 0 Number o f T r a n s p l a n t s One Two 19 3 6 1 Reason f o r R e t r a n s p l a n t a t i o n A c u t e R e j e c t i o n C h r o n i c R e j e c t i o n H i g h B l o o d P r e s s u r e 0 1 0 Sex Male Female 14 8 4 3 Number of H e a l t h Problems None One Two Three F i v e 14 6 2 0 0 3 1 1 1 1 Appendix Q Item Means on t h e U n c e r t a i n t y S c a l e 203 USS Item Means f o r Long Term K i d n e y T r a n s p l a n t P a t i e n t s USS Item Item Mean USS Item Item Mean 1 2.0 31 2.0 2 1.9 32 * 2.4 3 1.8 33 1.6 4 * 2.5 34 1.6 5 1.7 35 2.3 6 1.4 36 1.9 7 1.8 37 1.5 8 1.5 38 1.3 9 1.4 39 1.9 10 1.5 40 2.0 11 1.6 41 1.5 12 2.1 42 1.7 13 1.5 43 1.5 14 1.5 44 1.6 15 1.9 45 1.3 16 * 2.9 46 1.5 17 2.0 47 1.8 18 2.0 48 2.2 19 1.3 49 1.3 20 2.2 50 1.4 21 1.6 51 1.8 22 1.6 52 1.5 23 * 2.4 53 1.7 24 1.5 54 2.0 25 1.4 55 2.0 26 1.4 56 1.8 27 * 2.5 57 1.6 28 1.6 58 1.5 29 1.6 59 1.7 30 1.5 60 1.7 Note. * = it e m s t h a t r e f l e c t e d h i g h e r u n c e r t a i n t y f o r l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s . 204 Appendix R Item Means of on t h e R e v i s e d J a l o w i e c Coping S c a l e 205 C o p i n g S t r a t e g y Use and E f f e c t i v e n e s s Item Means i n Long Term K i d n e y T r a n s p l a n t P a t i e n t s JCS Item P a t i e n t Item Mean JCS Item P a t i e n t Item Mean Use E f f e c t i v e n e s s Use E f f e c t i v e n e s s 1 1.6 0.8 31 1.9 2.0 2 2.0 1.6 32 2.0 1.8 3 0.9 0.8 33 1.5 1.6 4 2.0 2.0 34 0.6 1.3 5 2.2 2.0 35 1.5 1.4 6 2.0 2.1 36 2.2 2.2 7 1.3 1.6 37 2.1 2.0 8 1.4 1.0 38 1.6 1.9 9 1.4 1.6 39 * 2.6 2.5 10 2.0 1.6 40 1.0 0.7 11 1.7 2 .1 41 2.2 1.7 12 2.1 1.9 42 1.4 1.9 13 * 2.3 2.2 43 1.9 1.9 14 1.6 1.3 44 2.2 2.0 15 1.4 1.9 45 1.6 1.8 16 2.2 2.0 46 1.0 1.3 17 1.5 2.0 47 * 2.3 2.2 18 0.8 1.2 48 1.1 0.9 19 2.0 1.1 49 1.7 1.7 20 0.4 0.4 50 * 2.7 2.4 21 1.6 1.3 51 0.7 0.4 22 1.8 1.7 52 2.0 1.8 23 0.7 0.7 53 1.5 2.0 24 1.2 0.5 54 * 2.3 2.2 25 1.7 1.7 55 1.1 1.3 26 1.5 2.0 56 1.1 0.9 27 * 2.3 ' 2.1 57 1.8 2.0 28 1.4 1.5 58 1.6 0.6 29 * 2.3 2.2 59 1.3 1.5 30 * 2.7 2.4 60 0.7 0.8 Note. * i n d i c a t e s t h o s e items t h a t r e f l e c t e d h i g h e r use and e f f e c t i v e n e s s f o r l o n g - t e r m k i d n e y t r a n s p l a n t p a t i e n t s . 

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