UBC Theses and Dissertations

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UBC Theses and Dissertations

An exploration of the experience of the patient with cancer pain McIntyre, Marjorie Ruth 1988

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EXPLORATION OF THE EXPERIENCE OF THE PATIENT WITH CANCER PAIN BY MARJORIE RUTH McINTYRE B.S.N., U n i v e r s i t y of V i c t o r i a , 1983 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING THE FACULTY OF GRADUATE STUDIES The School of Nursing We accept t h i s t h e s i s as conforming to the r e q u i r e d standard THE UNIVERSITY OF BRITISH COLUMBIA October, 1988 (T) M a r j o r i e Ruth Mclntyre, 1988 i n 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 ^^ULAJ^yf^CJ  The University of British Columbia Vancouver, Canada Date /7J/<?$8 DE-6 (2/88) i i A b s t r a c t AN EXPLORATION OF THE EXPERIENCE OF THE PATIENT WITH CANCER PAIN This study was designed to e l i c i t the p a t i e n t ' s p e r s p e c t i v e on the experience of cancer pain f o r the purpose of g a i n i n g knowledge that would enable h e a l t h p r o f e s s i o n a l s to i n t e r v e n e more e f f e c t i v e l y with p a t i e n t s who experience cancer p a i n . Data were c o l l e c t e d by means of in-depth i n t e r v i e w s with 10 p a t i e n t s , ranging i n age from 44 to 67, each of whom was a p a t i e n t at an ambulatory pain c l i n i c i n Greater Vancouver. A set of questions generated from the l i t e r a t u r e and the r e s e a r c h e r ' s experience guided the i n i t i a l i n t e r v i e w s . As the i n t e r v i e w s progressed, a d d i t i o n a l questions were formulated from the data. Through a process of constant comparative a n a l y s i s and v a l i d a t i o n of a n a l y t i c a l data with p a r t i c i p a n t s , the r e s e a r c h e r was able to c o n s t r u c t accounts r e f l e c t i n g the p a r t i c i p a n t ' s p e r s p e c t i v e s . An a n a l y t i c framework was developed from the themes and concept c a t e g o r i e s i n the data. According to the p a r t i c i p a n t s i n t h i s study, the experience of cancer pain i n c l u d e d the p a i n , the impact of the pain on t h e i r w e l l - b e i n g , and the s t r a t e g i e s they u t i l i z e d to cope both with the pain and i t s impact. P a r t i c i p a n t s e xplained the - \ i i i i m p a c t o f c a n c e r p a i n w i t h i n t h e c o n t e x t o f t h e c o p i n g s t r a t e g i e s t h e y e m p l o y e d . A l t h o u g h p a r t i c i p a n t s i n t h e s t u d y i n t e r p r e t e d a n d m a n a g e d t h e i r p a i n i n v e r y i n d i v i d u a l w a y s , c o m m o n c o n c e r n s w e r e i d e n t i f i e d i n t h e e x p e r i e n c e t h a t h a v e i m p l i c a t i o n s f o r n u r s i n g p r a c t i c e a n d r e s e a r c h . Table of Contents i v Page Ab s t r a c t i i Table of Contents i v Acknowledgement s . v i Chapter 1: INTRODUCTION Background to the Problem and Purpose 1 Statement of the Problem and Purpose 4 D e f i n i t i o n of Terms 5 Methodology 6 Assumptions 8 L i m i t a t i o n s 8 Summary 9 Chapter 2: REVIEW OF THE LITERATURE I n t r o d u c t i o n 11 Pain 11 Cancer Pain 14 Research Studies 18 Summary 23 Chapter 3: METHODOLOGY I n t r o d u c t i o n 24 S e l e c t i o n of the P a r t i c i p a n t s 24 C r i t e r i a f o r S e l e c t i o n 24 S e l e c t i o n Procedure 25 C h a r a c t e r i s t i c s of the P a r t i c i p a n t s 26 Data C o l l e c t i o n 27 C o n s t r u c t i o n of Accounts 30 E t h i c a l C o n s i d e r a t i o n s 30 Data A n a l y s i s 31 Summary 32 V Chapter 4: THE PATIENT ACCOUNTS I n t r o d u c t i o n 33 Cancer Pain 34 Impact of Cancer Pain 43 Impact on P h y s i c a l Well-Being 44 Impact on S o c i a l Well-Being 48 Impact on Emotional Well-Being 56 Coping with Cancer Pain and I t s Impact 65 Making Others Understand 66 Managing Treatment 76 Keeping C o n t r o l 86 Summary 93 Chapter 5: DISCUSSION OF THE FINDINGS I n t r o d u c t i o n 95 Cancer Pain 96 Impact of Cancer Pain 101 Impact on P h y s i c a l Well-Being 102 Impact on S o c i a l Well-Being 106 Impact on Emotional Well-Being I l l Coping with Cancer Pain and I t s Impact 116 Making Others Understand ..116 Managing Treatment 121 Keeping C o n t r o l 124 Summary 128 Chapter 6: SUMMARY, CONCLUSIONS, AND IMPLICATIONS FOR NURSING Summary • 130 Conclusions 132 I m p l i c a t i o n s f o r Nursing P r a c t i c e 134 I m p l i c a t i o n s f o r Nursing Education 136 I m p l i c a t i o n s f o r Nursing Research 137 References • 140 Appendix A 146 Appendix B 148 v i Acknowledgement s For t h e i r e f f o r t s and endless patience i n gu i d i n g me through the re s e a r c h process, I would l i k e to thank the members of my t h e s i s committee, P r o f e s s o r s S a l l y Thorne ( c h a i r ) , Carole Robinson, and C a r o l G i l l i n g s . I would p a r t i c u l a r l y l i k e to express my a p p r e c i a t i o n to S a l l y f o r her outstanding commitment to the resea r c h process. Although many f a c u l t y , c o l l e a g u e s , and f r i e n d s c o n t r i b u t e d i n some way to t h i s process, I would l i k e to o f f e r s p e c i a l thanks to the f o l l o w i n g i n d i v i d u a l s : Judy Lynam, Margaret Campbell, C l a r i s s a Green, Joan Anderson, Susan H a m i l i t o n , Barbara Warren, Louise Hughes, Barbara A l l a n , Mary S c o t t , Sue Smith, C h r i s Bradley, Sigga H a l l d o r s , Ling L a i , Barbara R i d i n g , Sandra Whytock, Ton! S t o v e l , Bev Lowsley, and Eleanor McKenzie. To my f a m i l y whose love and encouragement has made the d i f f e r e n c e , I am very t h a n k f u l . I would e s p e c i a l l y l i k e to thank Murray f o r h i s understanding and support throughout the process . F i n a l l y , I would l i k e to acknowledge the time and e f f o r t s of the ten p a r t i c i p a n t s who t o l d t h e i r s t o r i e s i n the hope that t h e i r c o n t r i b u t i o n s might help others who experience cancer p a i n . 1 C h a p t e r 1 INTRODUCTION B a c k g r o u n d to the P r o b l e m and P u r p o s e T h i s i s a r e p o r t of a s t u d y i n v e s t i g a t i n g the p a t i e n t ' s p e r c e p t i o n of the p a i n e x p e r i e n c e i n c a n c e r . A c c o r d i n g to the l i t e r a t u r e r e v i e w e d , p a i n i s a s i g n i f i c a n t p r o b l e m f o r the m a j o r i t y of p e o p l e w i t h c a n c e r a t some p o i n t d u r i n g t h e i r i l l n e s s ( S t a r c k , 1 9 82). Each y e a r 80,000 C a n a d i a n s s u f f e r from p a i n due to c a n c e r and a l a r g e ..percentage of t h i s p a i n i s p o o r l y c o n t r o l l e d ( S e l l e r s , 1 9 8 4 ). Many s t u d i e s have a d d r e s s e d the q u e s t i o n of poor p a i n c o n t r o l i n c a n c e r . F i n d i n g s a t t r i b u t e poor p a i n c o n t r o l to f o u r f a c t o r s : 1) i n a d e q u a t e e d u c a t i o n of h e a l t h c a r e p r o f e s s i o n a l s ; 2) i n a p p r o p r i a t e b e l i e f s or b i a s e s of h e a l t h c a r e p r o f e s s i o n a l s ; 3) f o c u s on t r a d i t i o n a l l y o b j e c t i v e , r a t h e r t h a n s u b j e c t i v e , p a i n a s s e s s m e n t ; and 4) the emphasis on the p e r s p e c t i v e of the h e a l t h c a r e p r o f e s s i o n a l r a t h e r t h a n t h a t of the p a t i e n t . The f i r s t f a c t o r t h a t a c c o u n t s f o r poor p a i n c o n t r o l i s the e d u c a t i o n of h e a l t h c a r e p r o f e s s i o n a l s . R e c e n t changes i n c u r r i c u l a f o r e d u c a t i n g h e a l t h c a r e p r o f e s s i o n a l s r e f l e c t a b e t t e r u n d e r s t a n d i n g of p a i n management. However, r e c e n t s t u d i e s s u g g e s t t h a t the se c o n d f a c t o r , b e l i e f s and b i a s e s of t h e s e p r o f e s s i o n a l s ( s u c h as c o n c e r n s about a d d i c t i o n and 2 dependence on n a r c o t i c s ) , c o n t i n u e to c o m p l i c a t e p a i n c o n t r o l f o r c a n c e r p a t i e n t s (Hauck, 1985; T w y c r o s s & L a c k , 1983) . The t h i r d f a c t o r w h i c h a c c o u n t s f o r poor p a i n c o n t r o l a r i s e s from th e way i n w h i c h p a i n has been t r a d i t i o n a l l y d e f i n e d and a s s e s s e d . Those who v i e w p a i n o b j e c t i v e l y r e l y on e v i d e n c e of p h y s i o l o g i c a l v a r i a b l e s and measurement i n s t r u m e n t s to c o n f i r m the p r e s e n c e of p a i n . On t h e o t h e r hand, t h o s e who v i e w p a i n as a s u b j e c t i v e phenomenon depend on the p a t i e n t ' s d e s c r i p t i o n of the p a i n , and the p a t i e n t ' s e v a l u a t i o n of i n t e r v e n t i o n s . Because many r e s e a r c h e r s have f o c u s e d p r i m a r i l y on o b j e c t i v e phenomena i n s c i e n t i f i c s t u d i e s , the emphasis i n p a i n r e s e a r c h has been on t h e d e v e l o p m e n t of measurement i n s t r u m e n t s f o r t h e c o l l e c t i o n of o b j e c t i v e d a t a . T h i s s t r a t e g y has l i m i t e d a s s e s s m e n t to one v a r i a b l e , t h a t of i n t e n s i t y . R e c e n t s t u d i e s , however, s u g g e s t t h a t t h e measurement of i n t e n s i t y does not a d e q u a t e l y r e p r e s e n t the t o t a l p a i n e x p e r i e n c e ( M c G u i r e , 1984). R e s e a r c h e r s s u c h as M e l z a c k and W a l l (1983) p r o p o s e t h a t the complex b e h a v i o r o b s e r v e d i n p e r s o n s e x p e r i e n c i n g p a i n i s the r e s u l t of s e n s o r y , m o t i v a t i o n a l and c o g n i t i v e p r o c e s s e s . A h l e s , B l a n c h a r d and R u c k d e s c h e l (1983) have b r o a d e n e d t h i s c o n c e p t u a l i z a t i o n to i n c l u d e a f f e c t i v e and b e h a v i o r a l components i n t h e i r a s s e s s m e n t of c a n c e r p a i n . These new c o n c e p t u a l i z a t i o n s of 3 p a i n have i n c r e a s e d r e s e a r c h i n t e r e s t i n the p a t i e n t ' s p e r c e p t i o n and i n t e r p r e t a t i o n of the p a i n e x p e r i e n c e , both i n the care of cancer p a t i e n t s and i n cancer p a i n r e s e a r c h . However, as s t a t e d e a r l i e r , r e s e a r c h has been dominated by the p r o f e s s i o n a l p e r s p e c t i v e . Thus , the f o u r t h f a c t o r c o n t r i b u t i n g to poor p a i n c o n t r o l i s the emphasis on the p e r s p e c t i v e of the h e a l t h care p r o f e s s i o n a l , r a t h e r that that of the p a t i e n t . P r e v i o u s l y , when the p a t i e n t ' s p e r s p e c t i v e has been e x p l o r e d , the methods used to determine the s u b j e c t i v e exper ience of p a i n have o f t en been i n a c c u r a t e . For example, t o o l s used to e l i c i t the p a t i e n t ' s d e s c r i p t i o n of cancer p a i n have been des igned by p r o f e s s i o n a l s and based on the b e l i e f s and e x p e r i e n c e s of p r o f e s s i o n a l s r a t h e r than those of the p a t i e n t (Copp, 1985). T h i s f a i l u r e to grasp the p a t i e n t ' s p e r s p e c t i v e of the p a i n has r e s u l t e d i n inadequate assessment and i n t e r v e n t i o n i n the care of p a t i e n t s wi th p a i n (Donovan & D i l l i o n , 1987). I t has a l s o r e s u l t e d i n f i n d i n g s that may r e f l e c t the view of the r e s e a r c h e r s , r a t h e r than that of the p a t i e n t s who exper i ence the p a i n . An i n - d e p t h review of the l i t e r a t u r e r e v e a l e d that more r e s e a r c h i s needed to i n c r e a s e our u n d e r s t a n d i n g of the p a i n e x p e r i e n c e for the p a t i e n t wi th c a n c e r . T h i s r e s e a r c h e r ' s e x p e r i e n c e has been on a med ica l oncology u n i t , both as a c l i n i c i a n and as an e d u c a t o r . O b s e r v a t i o n s and c o n v e r s a t i o n s wi th cancer p a t i e n t s , n u r s i n g s t a f f , and 4 s t u d e n t s have l e d to the c o n c l u s i o n t h a t i n a d e q u a t e knowledge of the e x p e r i e n c e of c a n c e r p a i n i s a p r o b l e m worthy of r e s e a r c h . The l i t e r a t u r e r e v i e w i n d i c a t e d t h a t p a i n has a l r e a d y been s t u d i e d from a number of p e r s p e c t i v e s . A l t h o u g h s e v e r a l d e s c r i p t i v e s t u d i e s have been u n d e r t a k e n , to the knowledge of t h i s r e s e a r c h e r no s t u d i e s u s i n g a p h e n o m e n o l o g i c a l a p p r o a c h to examine p a i n from the p e r s p e c t i v e of the c a n c e r p a t i e n t have been c a r r i e d o u t . Thus, i t was f e l t t h a t a s t u d y a d d r e s s i n g the phenomenon i n t h i s way would make a s i g n i f i c a n t c o n t r i b u t i o n to the knowledge t h a t i s c u r r e n t l y a v a i l a b l e . S t a t e m e n t of the P r o b l e m and P u r p o s e The g e n e r a l p r o b l e m to w h i c h t h i s s t u d y i s a d d r e s s e d i s the l a c k of knowledge about the p a t i e n t ' s p e r s p e c t i v e of the e x p e r i e n c e of c a n c e r p a i n . The p u r p o s e of t h i s s t u d y , t h e r e f o r e , was to a c h i e v e a b e t t e r u n d e r s t a n d i n g of the e x p e r i e n c e of c a n c e r p a i n by u t i l i z i n g a p h e n o m e n o l o g i c a l a p p r o a c h i n s t u d y i n g i t . I t was a n t i c i p a t e d t h a t i n s i g h t s from th e p a t i e n t ' s p e r s p e c t i v e would e n a b l e h e a l t h c a r e p r o f e s s i o n a l s to i n t e r v e n e more e f f e c t i v e l y w i t h p a t i e n t s who e x p e r i e n c e c a n c e r p a i n , and t h e r e f o r e to enhance the q u a l i t y of c a r e t h e s e p a t i e n t s r e c e i v e . Thus, the p u r p o s e of t h i s s t u d y was to answer the q u e s t i o n : What i s i t l i k e f o r t h e p e r s o n who e x p e r i e n c e s c a n c e r p a i n ? In o r d e r t o a c c o m p l i s h t h i s , t h e f o l l o w i n g q u e s t i o n s were a s k e d : 5 1) What i s the n a t u r e of the p a i n a c c o r d i n g to t h e p a t i e n t ? 2) How does the p a t i e n t d e s c r i b e h i s or h e r r e s p o n s e to the p a i n ? 3 ) What s t r a t e g i e s has the p a t i e n t employed to manage p a i n ? 4) How does the e x p e r i e n c e of c a n c e r p a i n a f f e c t the p a t i e n t ? 5) What changes i n t h e p a t i e n t ' s d a i l y l i f e have o c c u r r e d as a r e s u l t of the p a i n ? D e f i n i t i o n of Terms P a i n : t h e s u b j e c t i v e d e s c r i p t i o n of p a i n as p e r c e i v e d and r e p o r t e d by the p a t i e n t . C a n c e r P a t i e n t : a p e r s o n who has been d i a g n o s e d w i t h c a n c e r , and i s e x p e r i e n c i n g c a n c e r - r e l a t e d p a i n . F o r the p r o p o s e d s t u d y , the c a n c e r p a t i e n t i s e i g h t e e n y e a r s of age or o l d e r and has a l i f e e x p e c t a n c y of a t l e a s t s i x months, i n the o p i n i o n of the p a i n c l i n i c p h y s i c i a n . C a n c e r p a i n : p a i n w h i c h the p a t i e n t i d e n t i f i e s as r e l a t e d to the d i s e a s e r a t h e r t h a n to d i a g n o s t i c t e s t s , t r e a t m e n t s , or the e m o t i o n a l r e s p o n s e to h a v i n g c a n c e r . 6 M e t h o d o l o g y Q u a l i t a t i v e and q u a n t i t a t i v e a p p r o a c h e s to r e s e a r c h s h o u l d be " s e l e c t i v e l y and a p p r o p r i a t e l y used a c c o r d i n g to the n a t u r e of the p r o b l e m and what i s known about the phenomenon to be s t u d i e d " ( F i e l d & Morse, 1985, p. 1 2 ) . I f a g r e a t d e a l i s a l r e a d y known about a t o p i c and t h e r e s e a r c h s eeks r e l a t i o n s h i p s between v a r i a b l e s or c a u s a t i o n , t h e n q u a n t i t a t i v e r e s e a r c h i s most a p p r o p r i a t e . However, when the r e s e a r c h e r s e e k s new ways to " c a t e g o r i z e , c l a s s i f y , or c o n c e p t u a l i z e s i t u a t i o n s " ( D i e r s , 1979, p. 100) i n o r d e r " t o d e v i s e or i n v e n t l a b e l s t h a t t a k e n t o g e t h e r w i l l u s e f u l l y c h a r a c t e r i z e the i m p o r t a n t a s p e c t s of a g i v e n s i t u a t i o n " ( p . 100), a f a c t o r - i s o l a t i n g or q u a l i t a t i v e d e s i g n i s more a p p r o p r i a t e . Because new i n s i g h t s i n t o the e x p e r i e n c e of c a n c e r p a i n a r e s o u g h t , the m e t h o d o l o g y f o r t h i s s t u d y i s q u a l i t a t i v e and r e l i e s on p h e n o m e n o l o g i c a l t h e o r y as i t s framework. "Phenomenology a c c e p t s e x p e r i e n c e as i t e x i s t s i n the c o n s c i o u s n e s s of t h e i n d i v i d u a l " ( F i e l d & Morse, 1985, p. 2 8 ) . O i l e r (1982) s t a t e s , "The p h e n o m e n o l o g i c a l a p p r o a c h i s an a l t e r n a t e r e s e a r c h method, one w h i c h can most e f f e c t i v e l y s e r v e n u r s i n g ' s g o a l to u n d e r s t a n d the e x p e r i e n c e " ( p . 1 7 8 ) . And to u n d e r s t a n d t h e e x p e r i e n c e , a c c o r d i n g to F i e l d and Morse ( 1 9 8 5 ) , i s " t o d i s c o v e r the i n s i d e r ' s p e r s p e c t i v e on a s i t u a t i o n " ( p . 1 9 ) . 7 I n q u a l i t a t i v e r e s e a r c h , the t y p e of sample used assumes t h a t " a l l a c t o r s i n a s e t t i n g a r e not e q u a l l y i n f o r m e d about the knowledge s o u g h t by t h e r e s e a r c h e r " ( M o r s e , 1986, p. 1 8 3 ) . I n t h e o r e t i c a l s a m p l i n g (as used i n t h i s s t u d y ) i n f o r m a n t s a r e s e l e c t e d " a c c o r d i n g to the t h e o r e t i c a l needs and the d i r e c t i o n of the r e s e a r c h " ( p . 1 8 5 ) . I n i t i a l l y , i n f o r m a n t s a r e s e l e c t e d b e c a u s e of t h e i r e x p e r i e n c e w i t h the phenomenon b e i n g s t u d i e d . As the s t u d y p r o c e e d s , i n f o r m a n t s a r e d e l i b e r a t e l y s e l e c t e d on the b a s i s of t h e i r a b i l i t y to c o n f i r m or r e f u t e e m e r g i n g themes. In n o n p r o b a b i l i t y s a m p l i n g , c o n c e p t s such as v a l i d i t y and r e l i a b i l i t y do not a p p l y . R a t h e r , the c r i t e r i a f o r e v a l u a t i o n of q u a l i t a t i v e r e s e a r c h i n c l u d e the r i c h n e s s of the d a t a and the c r e d i b i l i t y of the c o n c e p t s d e v e l o p e d from them ( D i e r s , 1 9 79). In a d i s c u s s i o n on the a p p r o p r i a t e sample s i z e f o r t h i s t y p e of r e s e a r c h , Ornery (1983) e x p l a i n s t h a t " b e cause of the l e n g t h of the d a t a g a t h e r i n g i n t e r v i e w ( s ) and the d e t a i l o f c o m p l e t e d e s c r i p t i o n , the sample s i z e i s u s u a l l y s m a l l " ( p . 5 7 ) . I n a d d i t i o n , i t i s i m p o s s i b l e to d e t e r m i n e the e x a c t sample s i z e needed i n advance b e c a u s e i t i s " t h e need to e x p l o r e , c o n f i r m , or r e f u t e t h e e m e r g i n g t h e o r y t h a t d e t e r m i n e s the s e l e c t i o n of the sample" ( M o r s e , 1986, p. 1 8 3 ) . The r o l e r e q u i r e d of the n u r s e r e s e a r c h e r i n t h e p h e n o m e n o l o g i c a l p a r a d i g m of q u a l i t a t i v e m e t h o d o l o g y 8 i s to " b e t t e r u n d e r s t a n d p a t i e n t s by e n t e r i n g i n t o f i e l d s of p e r c e p t i o n and thus see l i f e , as w e l l as t h e i r i l l n e s s and the i m p l i c a t i o n s of t h e i r i l l n e s s from the p a t i e n t ' s p o i n t of v i e w " ( D a v i s , 1978, p. 1 8 6 ) . To a c c o m p l i s h t h i s , n u r s e s must e n t e r i n t o the p r o c e s s i t s e l f and i n t e r p r e t i t from the p a t i e n t s ' p e r s p e c t i v e . A s s u m p t i o n s The r e s e a r c h e r assumed t h a t : 1) t h e r e a r e c o m m o n a l i t i e s i n the p a i n e x p e r i e n c e ; 2) p a t i e n t s w i l l d e s c r i b e and can e x p l a i n t h i s e x p e r i e n c e ; and, 3) t h e r e s e a r c h e r w i l l u n d e r s t a n d t h i s e x p e r i e n c e and be a b l e to s y n t h e s i z e i t i n t o a c o h e r e n t d e s c r i p t i o n . F i n a l l y , i t was assumed t h a t 4) an u n d e r s t a n d i n g of what the p a i n e x p e r i e n c e i s l i k e f o r c a n c e r p a t i e n t s c o u l d be d e t e r m i n e d t h r o u g h p h e n o m e n o l o g i c a l r e s e a r c h methods. L i m i t a t i o n s The m e t h o d o l o g y l i m i t s the g e n e r a l i z a t i o n of the f i n d i n g s to t h o s e i n t e r v i e w e d . In a d d i t i o n , b e c a u s e the p a r t i c i p a n t s were c o n t a c t e d t h r o u g h one p a i n c l i n i c , t h e y may i n f a c t r e p r e s e n t a s p e c i a l i z e d s u b g r o u p of t h e t h e o r e t i c a l p o p u l a t i o n of the p a t i e n t s w i t h c a n c e r p a i n . The amount and q u a l i t y of the d a t a have been l i m i t e d by the t i m e and r e s o u r c e s of a s t u d e n t r e s e a r c h e r . 9 Summary T h i s c h a p t e r has i n t r o d u c e d the p r o b l e m and p u r p o s e of the s t u d y , and the r a t i o n a l e f o r the m e t h o d o l o g y s e l e c t e d has been b r i e f l y d e s c r i b e d . I t was a p p a r e n t , f o l l o w i n g an e x t e n s i v e l i t e r a t u r e r e v i e w of p r e v i o u s r e s e a r c h f i n d i n g s and m e t h o d o l o g i e s , t h a t a q u a l i t a t i v e s t u d y u s i n g a p h e n o m e n o l o g i c a l a p p r o a c h would add an i m p o r t a n t e l e m e n t to what i s a l r e a d y known about the e x p e r i e n c e of c a n c e r p a i n . F u r t h e r m o r e , t h e s e i n s i g h t s have the p o t e n t i a l to improve a s s e s s m e n t and i n t e r v e n t i o n i n t h e c a r e of c a n c e r p a t i e n t s e x p e r i e n c i n g p a i n and u l t i m a t e l y improve t h e q u a l i t y of t h e i r l i v e s . T h i s s t u d y was d e s i g n e d to e x p l o r e the s u b j e c t i v e e x p e r i e n c e of c a n c e r p a i n f o r the p u r p o s e of g a i n i n g a b e t t e r u n d e r s t a n d i n g of t h a t e x p e r i e n c e from t h e p a t i e n t ' s p e r s p e c t i v e . The f o l l o w i n g c h a p t e r ( C h a p t e r Two) d i s c u s s e s the l i t e r a t u r e r e l a t e d to p a i n , c a n c e r p a i n , and the e x p e r i e n c e of l i v i n g w i t h c a n c e r p a i n . T h i s l i t e r a t u r e p r o v i d e s the b a c k g r o u n d f o r the s t u d y . R e l e v a n t r e s e a r c h i s d i s c u s s e d to f u r t h e r e s t a b l i s h the r a t i o n a l e ' f o r t h i s s t u d y . C h a p t e r T h r e e d e s c r i b e s the p r o c e s s u t i l i z e d to implement the m e t h o d o l o g y f o r t h i s s t u d y . The a n a l y s i s of the d a t a c o l l e c t e d f r o m the p a r t i c i p a n t s i s p r e s e n t e d i n C h a p t e r F o u r . C h a p t e r F i v e c o n t a i n s the d i s c u s s i o n of the a n a l y z e d d a t a i n terms of t h e l i t e r a t u r e p r e s e n t e d i n C h a p t e r Two and 10 a d d i t i o n a l r e l e v a n t m a t e r i a l . C h a p t e r S i x summarizes the s t u d y and s t a t e s t h e i m p l i c a t i o n s f o r n u r s i n g p r a c t i c e , e d u c a t i o n , and r e s e a r c h . 11 C h a p t e r 2 REVIEW OF THE LITERATURE I n t r o d u c t i o n T h i s c h a p t e r w i l l r e v i e w the l i t e r a t u r e r e l e v a n t to t h e s t a t e d p u r p o s e of t h i s s t u d y , w h i c h i s to g a i n a b e t t e r u n d e r s t a n d i n g of t h e c a n c e r p a i n e x p e r i e n c e f r o m the p a t i e n t ' s p e r s p e c t i v e . C o n c e p t s about p a i n , c a n c e r p a i n and r e s e a r c h s t u d i e s on the c a n c e r p a i n e x p e r i e n c e were r e v i e w e d to d e t e r m i n e what was a l r e a d y known, and by what methods t h i s knowledge had been a c q u i r e d . L o c a t i n g t h e s t u d y w i t h i n the c o n t e x t of e x i s t i n g knowledge and r e s e a r c h c l a r i f i e d the r a t i o n a l e f o r the s t u d y p r o p o s e d . P a i n Over the p a s t two d e c a d e s , s i g n i f i c a n t a d v a n c e s have been made i n the s t u d y of p a i n . S e v e r a l t h e o r i e s have been d e v e l o p e d , w h i c h have s e r v e d as models of our u n d e r s t a n d i n g s about p a i n . T h e o r i e s have opened the door to r e s e a r c h , and have changed our v i e w of p a i n from a o n e - d i m e n s i o n a l c o n c e p t to a complex m u l t i d i m e n s i o n a l phenomenon. V i e w i n g p a i n as m u l t i d i m e n s i o n a l has s h i f t e d t h e f o c u s from p a i n as a s t r i c t l y s e n s o r y phenomenon to a v i e w w h i c h i n c l u d e s c o g n i t i v e and a f f e c t i v e d i m e n s i o n s ( A h l e s et a l . , 1 9 83). T h i s f o c u s has l e d r e s e a r c h e r s to d e s c r i b e the p a i n 12 e x p e r i e n c e i n terms of t h r e e components: s e n s a t i o n , p e r c e p t i o n and r e s p o n s e . S e n s a t i o n r e f e r s to the n e u r o p h y s i o l o g i c a l component of p a i n . S e n s a t i o n r e l i e s on an i n t a c t s p i n a l c o r d and p e r i p h e r a l n e r v o u s s y s t e m f o r r e c e p t i o n and t r a n s m i s s i o n of p a i n f u l i m p u l s e s . F a c t o r s i n t e r f e r i n g w i t h t h i s s y s t e m , s u c h as d r u g s , trauma, tumours and m e t a b o l i c d i s o r d e r s , can a l t e r t r a n s m i s s i o n ( P o t t e r & P e r r y , 1 9 85). S e n s a t i o n i s t h o u g h t to be u n i f o r m when i n d i v i d u a l s have e x p e r i e n c e d i d e n t i c a l s t i m u l i ( S t e r n b a c h , 1974). The p r o b l e m w i t h s t u d i e s t h a t have f o c u s e d on s e n s a t i o n i s t h a t t h e y f a i l to t a k e t h e s u b j e c t i v e n a t u r e of p a i n i n t o a c c o u n t . F u r t h e r m o r e , t h e y f a i l to a c c o u n t f o r the p o s s i b i l i t y t h a t i n t e n s i t y does not a d e q u a t e l y r e p r e s e n t the t o t a l p a i n e x p e r i e n c e ( M c G u i r e , 1980; O v e r t o n , S t i n s o n , & Day, 1977). P a i n p e r c e p t i o n i n v o l v e s i n t e r p r e t a t i o n of the p a i n s e n s a t i o n , and i n c l u d e s b o t h 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 f a c t o r s . S i n c e p a i n p e r c e p t i o n r e l i e s on c o n s c i o u s n e s s , f a c t o r s such as d r u g s w h i c h a l t e r c o n s c i o u s n e s s a l s o a l t e r p a i n p e r c e p t i o n ( P o t t e r & P e r r y , 1985). G a t e - c o n t r o l t h e o r y , f i r s t p r o p o s e d by M e l z a c k and W a l l i n 1965, has s e r v e d as a model f o r our u n d e r s t a n d i n g of p a i n p e r c e p t i o n . T h i s model a c c o u n t s f o r the v a r i a b i l i t y i n p a i n p e r c e p t i o n by i d e n t i f y i n g how the o r i g i n a l s e n s a t i o n i s m o d u l a t e d by v a r i o u s mechanisms i n the n e r v o u s s y s t e m . T h i s t h e o r y p r o p o s e s t h a t a g a t i n g mechanism e i t h e r b l o c k s p a i n 13 t r a n s m i s s i o n s or a l l o w s them to p a s s , t h u s i n f l u e n c i n g p a i n p e r c e p t i o n . I t f u r t h e r p r o p o s e s t h a t i n p u t such as e m o t i o n s ( f e a r , a n x i e t y and d e p r e s s i o n ) and c o g n i t i v e awareness ( p a s t e x p e r i e n c e , knowledge and the meaning a t t r i b u t e d to p a i n ) a f f e c t the g a t i n g mechanism and t h e r e f o r e how i n d i v i d u a l s p e r c e i v e p a i n ( M e l z a c k & W a l l , 1983). G a t e - c o n t r o l t h e o r y has s t i m u l a t e d a g r e a t d e a l of r e s e a r c h on how v a r i a b l e s such as a n x i e t y and p a s t e x p e r i e n c e i n f l u e n c e a p a t i e n t ' s p a i n p e r c e p t i o n . More r e c e n t l y , s t u d i e s on b i o c h e m i c a l t h e o r i e s have c o n t r i b u t e d f u r t h e r to our u n d e r s t a n d i n g of p a i n p e r c e p t i o n . B i o c h e m i c a l t h e o r i e s s u g g e s t t h a t c e r t a i n n e u r o t r a n s m i t t e r s u b s t a n c e s c a l l e d e n d o r p h i n s can a l t e r p a i n p e r c e p t i o n by i n c r e a s i n g or d e c r e a s i n g n e r v e t r a n s m i s s i o n f r o m the p e r i p h e r y to the b r a i n (Abu-Saad, 1986). W h i l e t h e s e two t h e o r i e s d e s c r i b e a mechanism f o r p a i n p e r c e p t i o n , n e i t h e r f u l l y e x p l a i n s why p e r c e p t i o n v a r i e s between i n d i v i d u a l s or i n the same i n d i v i d u a l o v e r t i m e . R e c o g n i z i n g t h a t t h e r e a r e i n d i v i d u a l d i f f e r e n c e s i n p a i n p e r c e p t i o n has l e d to d e v e l o p m e n t of new methods of p a i n r e l i e f s u c h as d i s t r a c t i o n t e c h n i q u e s i n v o l v i n g massage and the use of h e a t and c o l d . F i n d i n g s as to the e f f e c t i v e n e s s of t h e s e i n t e r v e n t i o n s have been i n c o n c l u s i v e but have s e r v e d to e m p h a s i z e the i m p o r t a n c e of i n d i v i d u a l i z e d a s s e s s m e n t (Donovan & D i l l i o n , 1 9 8 7). 14 Response to p a i n has b o t h a p h y s i o l o g i c a l and a b e h a v i o r a l component. The p h y s i o l o g i c a l r e s p o n s e r e l a t e s to the s t i m u l a t i o n of the a u t o n o m i c n e r v o u s s y s t e m as p a r t of the s t r e s s r e s p o n s e . In a c u t e p a i n ( s u d d e n o n s e t ) , t h i s r e s p o n s e can be v a l i d a t e d by o b j e c t i v e d a t a s u c h as h e a r t r a t e and b l o o d p r e s s u r e . In c h r o n i c p a i n , the i n d i v i d u a l a d a p t s to the p a i n and the r e s p o n s e c a n n o t be c o n f i r m e d by p h y s i o l o g i c a l i n d i c a t o r s , making the s u b j e c t i v e r e p o r t the o n l y r e a s o n a b l e i n d i c a t o r of t h e p a i n ( F o l e y , 1986). The b e h a v i o r a l r e s p o n s e , of w h i c h t h i s s u b j e c t i v e r e p o r t i s a p a r t , i s i n f l u e n c e d by a t t i t u d e s , v a l u e s and c u l t u r a l e x p e c t a t i o n s . A l t h o u g h our u n d e r s t a n d i n g of s e n s a t i o n , p e r c e p t i o n , and r e s p o n s e to p a i n i s not y e t c o m p l e t e , t h e s e t h e o r i e s have g r e a t l y a d v a n ced our knowledge about p a i n by l o o k i n g a t the m u l t i t u d e of v a r i a b l e s t h a t c o m p r i s e the p a i n e x p e r i e n c e . C a n c e r P a i n Nowhere i s the need f o r a d e e p e r u n d e r s t a n d i n g o f the p a i n e x p e r i e n c e more e v i d e n t t h a n i n t h e i n s t a n c e of p a t i e n t s e x p e r i e n c i n g c a n c e r p a i n . A r e v i e w of the f i n d i n g s of r e c e n t r e s e a r c h s u g g e s t s t h a t a l t h o u g h t h e i n c i d e n c e and scope of c a n c e r p a i n has been w i d e l y r e s e a r c h e d , the r e s u l t s have been v a r i a b l e ( A h l e s e t a l . , 1983; Donovan & D i l l i o n , 1987; Daut & C l e e l a n d , 1 9 82). F a c t o r s t h a t a r e b e l i e v e d to e x p l a i n t h e s e v a r i a b l e r e s u l t s a r e t h e t y p e of c a n c e r , the 15 s i t e of the d i s e a s e , and the s t a g e of the p a t i e n t ' s i l l n e s s ( F o l e y , 1 9 86). D e s p i t e the v a r i a b l e f i n d i n g s , i t i s s t i l l g e n e r a l l y h e l d t h a t p a i n i s a s i g n i f i c a n t f a c t o r i n t h e c a n c e r e x p e r i e n c e . T r a d i t i o n a l l y , c a n c e r p a i n has been v i e w e d ( l i k e o t h e r t y p e s of p a i n ) as a m u l t i d i m e n s i o n a l c o n c e p t i n c l u d i n g s e n s a t i o n , p e r c e p t i o n , and r e s p o n s e . M c G u i r e (1987) expanded upon t h e s e e a r l i e r ways of l o o k i n g a t c a n c e r p a i n to i n c l u d e the f a c t o r s a f f e c t i n g the p a t i e n t ' s p e r c e p t i o n and i n t e r p r e t a t i o n of the e x p e r i e n c e . W i t h i n t h i s framework, M c G u i r e has i d e n t i f i e d s i x components to c o n s i d e r i n the a s s e s s m e n t of the c a n c e r p a i n p a t i e n t : p h y s i o l o g i c a l , s e n s o r y , a f f e c t i v e , c o g n i t i v e , b e h a v i o r a l , and s o c i o c u l t u r a l components. In t h e p h y s i o l o g i c a l component, M c G u i r e i n c l u d e s the c a u s e of t h e p a i n ( d i s e a s e , t r e a t m e n t , or o t h e r ) , the t y p e of p a i n ( a c u t e or c h r o n i c ) , the r o l e of endogenous o p i o i d s i n n e r v e t r a n s m i s s i o n , and o t h e r f a c t o r s s u c h as f a t i g u e or i n s o m n i a w h i c h a f f e c t the o t h e r components of the e x p e r i e n c e . The s e n s o r y component i n c l u d e s the i n t e n s i t y ( s t r e n g t h of the p a i n ) , l o c a t i o n ( s i n g l e or m u l t i p l e s i t e s ) , and q u a l i t y ( s p e c i f i c n a t u r e s u c h as s h a r p / d u l l ) . The a f f e c t i v e component of t h i s model i n c l u d e s f e e l i n g s t a t e s s uch as a n x i e t y and d e p r e s s i o n , mood s t a t e s , and ego s t r e n g t h . The c o g n i t i v e component i n c l u d e s t h o u g h t p r o c e s s e s ( l e a r n i n g , k n owledge, and p a s t e x p e r i e n c e ) , the 16 i n t e r p r e t a t i o n of t h e meaning of the p a i n e x p e r i e n c e , and l o c u s of c o n t r o l ( i n t e r n a l / e x t e r n a l ) . The b e h a v i o r a l component i s d i r e c t l y i n f l u e n c e d by t h e c o g n i t i v e component and i n c l u d e s the a c t i v i t i e s p a t i e n t s p e r f o r m , s u c h as d r u g t a k i n g . The s i x t h component, the s o c i o c u l t u r a l component, i n c l u d e s the e t h n i c b a c k g r o u n d of the p a t i e n t and d e m o g r a p h i c v a r i a b l e s t h a t a f f e c t c a n c e r p a i n . M c G u i r e based t h i s c o n c e p t u a l i z a t i o n of the m u l t i d i m e n s i o n a l n a t u r e of c a n c e r p a i n on the e a r l i e r work of A h l e s and c o l l e a g u e s ( 1 9 8 3 ) , and M e l z a c k and W a l l ( 1 9 8 3 ) . She p r o p o s e d i t as an a p p r o p r i a t e framework f o r t h e a s s e s s m e n t , management, and s t u d y o f c a n c e r r e l a t e d p a i n . M c G u i r e f u r t h e r c l a i m s t h a t t h e s e components a r e i n t e r a c t i v e and i n t e r r e l a t e d , f a c i l i t a t i n g a h o l i s t i c a p p r o a c h to the p a t i e n t w i t h c a n c e r p a i n . Donovan and D i l l i o n (1987) s u p p o r t a b r o a d e r a p p r o a c h to the c o n c e p t u a l i z a t i o n of c a n c e r p a i n . They ar g u e t h a t such an a p p r o a c h i s needed i f we a r e to i mprove a s s e s s m e n t and i n t e r v e n t i o n i n the c a r e of c a n c e r p a t i e n t s w i t h p a i n . In t h e i r s t u d y , t h e s e a u t h o r s c o n c l u d e d : "The e v i d e n c e i s s t r o n g t h a t the u n d e r t r e a t m e n t of c a n c e r p a i n i s w i d e s p r e a d but t h e r e i s l i t t l e r e a l u n d e r s t a n d i n g of why t h i s p r o b l e m e x i s t s or what can be done about i t " ( p . 9 2 ) . Many r e s e a r c h e r s s u p p o r t the n o t i o n t h a t the knowledge and t e c h n o l o g y e x i s t to a d e q u a t e l y c o n t r o l c a n c e r p a i n (Donovan & D i l l i o n , 1987; F o l e y , 1986; L a t i m e r e t a l . , 17 1 9 8 3 ; S e l l e r s , 1 9 8 4 ; S t e r n s w a r d & O z o r i o , 1 9 8 5 ; T u t t l e , 1 9 8 5 ; T w y c r o s s & L a c k , 1 9 8 3 ) . On t h e o t h e r h a n d , r e s e a r c h f i n d i n g s show i n c o n s i s t e n t a p p l i c a t i o n o f t h i s k n o w l e d g e a n d t e c h n o l o g y ( B o n i c a , 1 9 7 9 ; C h a r a p , 1 9 7 8 ; D o n o v a n & D i l l i o n , 1 9 8 7 ; F a g e r h a u g h & S t r a u s s , 1 9 7 7 ; R a n k i n & S n i d e r , 1 9 8 4 ; T w y c r o s s & L a c k , 1 9 8 3 ) . A l t h o u g h t h e r e was l i t t l e a g r e e m e n t among t h e a u t h o r s r e v i e w e d on t h e r e a s o n f o r i n a d e q u a t e p a i n c o n t r o l f o r c a n c e r p a t i e n t s , i t was g e n e r a l l y b e l i e v e d t h a t h e a l t h c a r e p r o f e s s i o n a l s n e e d a b e t t e r u n d e r s t a n d i n g o f p a i n a s p a r t o f t h e c a n c e r p a i n e x p e r i e n c e . C l e e l a n d ( 1 9 8 4 ) , i n w r i t i n g a b o u t t h e i m p a c t o f p a i n o n t h e p a t i e n t w i t h c a n c e r , c o n c l u d e d t h a t " t h e p r e s e n c e o f p a i n , d e s p i t e e f f o r t s t o t r e a t i t , r e p r e s e n t s a c o n t i n u e d s o u r c e o f f r u s t r a t i o n f o r p a t i e n t s , t h e i r f a m i l i e s , a n d t h e h e a l t h c a r e t e a m " ( p . 2 6 3 5 ) . F o l l o w i n g a r e v i e w o f t h e r e s e a r c h o n c a n c e r p a i n f r o m s e v e r a l d i s c i p l i n e s , C l e e l a n d c o n c l u d e d t h a t " t e a c h i n g p a t i e n t s t o r e p o r t t h e l e v e l o f t h e i r p a i n . . . h a s p r o v e n u s e f u l i n m o n i t o r i n g t h e e f f e c t i v e n e s s o f p a i n m a n a g e m e n t , as w e l l a s e s t a b l i s h i n g p a i n c o n t r o l g o a l s f o r t h e i n d i v i d u a l p a t i e n t " ( p . 2 6 3 5 ) . A n d e r s o n ( 1 9 8 2 ) , i n a r e v i e w o f t h e l i t e r a t u r e o n n u r s i n g management o f t h e c a n c e r p a t i e n t i n p a i n , c o n c l u d e d t h a t " a l l e v i a t i o n o f t h e p a i n e x p e r i e n c e d by c a n c e r p a t i e n t s i s a c o n c e r n f o r a l l who c a r e f o r c a n c e r p a t i e n t s . . . a n d t h a t t h e r e h a s n o t b e e n a s i g n i f i c a n t n u m b e r o f r e s e a r c h s t u d i e s t h a t f o c u s on t h i s t o p i c " ( p . 3 9 ) . 18 What f o l l o w s i s a summary of the r e s e a r c h s t u d i e s a v a i l a b l e i n w h i c h the s u b j e c t i v e e x p e r i e n c e of the p a t i e n t w i t h c a n c e r p a i n was s p e c i f i c a l l y s o u g h t . R e s e a r c h S t u d i e s A h l e s and c o l l e a g u e s (1983) a p p l i e d a m u l t i d i m e n s i o n a l model of c a n c e r p a i n to two g r o u p s of c a n c e r p a t i e n t s , one group e x p e r i e n c i n g c a n c e r - r e l a t e d p a i n and a c o n t r o l group of p a i n - f r e e c a n c e r p a t i e n t s . They used i n t e r v i e w s , s e v e r a l s t a n d a r d i z e d t o o l s f o r m e a s u r i n g p a i n and p s y c h o l o g i c a l v a r i a b l e s , and p a t i e n t s ' r e c o r d i n g s of t h e i r p a i n i n a d i a r y o v e r a p e r i o d of one week. S e v e r a l i m p o r t a n t f i n d i n g s a r o s e from t h i s s t u d y . Of the 40 p a t i e n t s i n t e r v i e w e d , t h e m a j o r i t y (73.7%) " r e p o r t e d b e i n g g i v e n no i n f o r m a t i o n c o n c e r n i n g the s o u r c e or meaning of t h e i r p a i n " ( p . 2 8 6 ) . The a u t h o r s f o u n d a s t r o n g r e l a t i o n s h i p between not u n d e r s t a n d i n g the meaning or s o u r c e of t h e i r p a i n and h i g h d i s t r e s s l e v e l s i n t h e s e p a t i e n t s . A l s o , t h e b e l i e f t h a t p a i n was a s i g n of d i s e a s e p r o g r e s s i o n was f o u n d to c o r r e l a t e w i t h measures of d e p r e s s i o n and a n x i e t y . The work of t h e s e r e s e a r c h e r s has emph a s i z e d t h e c o m p l e x i t y o f the p a i n e x p e r i e n c e and p r o v i d e d i n s i g h t as to how the meaning a t t r i b u t e d to p a i n may i n f l u e n c e how t h e p a t i e n t r e s p o n d s . One d i f f i c u l t y w i t h t h i s s t u d y , w h i c h was i n t e n d e d to r e p r e s e n t the p a t i e n t ' s p e r s p e c t i v e , i s t h a t t h e a u t h o r s a p p r o a c h e d the p a t i e n t s w i t h p r e d e t e r m i n e d q u e s t i o n s ( e v e n 19 the p a i n d i a r y was s t r u c t u r e d ) , w h i c h l i m i t e d the d a t a to s p e c i f i c r e s p o n s e s . The M c G i l l P a i n Q u e s t i o n n a i r e (MPQ), an i n s t r u m e n t d e s i g n e d to p r o v i d e q u a n t i t a t i v e i n f o r m a t i o n on the major d i m e n s i o n s of p a i n , has been t e s t e d on p a t i e n t s w i t h c a n c e r p a i n by a number of r e s e a r c h e r s ( M e l z a c k & W a l l , 1983). One s t u d y (Graham, Bond, G e r k o v i c h , & Cook, 1980) c o n c l u d e d t h a t the MPQ was "a r e l i a b l e , m u l t i d i m e n s i o n a l measure of immediate p a i n " and not "a summary measure of p a s t p a i n o v e r a d e f i n e d p e r i o d of t i m e " ( p . 3 7 7 ) . Raiman (1986) m o d i f i e d the MPQ and t e s t e d i t on a group of h o s p i t a l i z e d c a n c e r p a t i e n t s w i t h l o n g term p a i n . She f o u n d t h a t the use of the q u e s t i o n n a i r e i m p r o v e d c o m m u n i c a t i o n between p a t i e n t s and s t a f f , w hich i n t u r n i m p r o v e d b o t h a s s e s s m e n t and i n t e r v e n t i o n i n the c a r e of t h e s e p a t i e n t s . In e v a l u a t i n g the q u e s t i o n n a i r e , p a t i e n t s " b e i n g c o n s u l t e d f e l t more r e s p e c t e d and l e s s i s o l a t e d " ( p . 2 7 ) , and a p p r e c i a t e d the o p p o r t u n i t y to t a l k to o t h e r s about t h e i r p a i n . However, t h e r e was l i t t l e i n the f i n d i n g s to s u g g e s t t h a t the MPQ e l i c i t e d b e t t e r d a t a ; r a t h e r , i t f a c i l i t a t e d the p r o c e s s . M c G u i r e (1,984), i n a s t u d y of c a n c e r i n p a t i e n t s , t e s t e d the f e a s i b i l i t y of u s i n g the MPQ i n the a s s e s s m e n t of p a t i e n t s e x p e r i e n c i n g p a i n . She c o n c l u d e d t h a t w i t h f u r t h e r d e v e l o p m e n t the MPQ " s h o u l d a s s i s t n u r s e s i n a s s e s s i n g and managing the p a i n of t h e i r c a n c e r p a t i e n t s " ( p . 3 7 ) , but 20 t h a t " f u r t h e r work i s needed to c h a r a c t e r i z e the p a i n of c a n c e r more c l e a r l y and c o m p l e t e l y " ( p . 3 7 ) . S e v e r a l r e s e a r c h e r s have i n v e s t i g a t e d the v a r i o u s p s y c h o l o g i c a l a s p e c t s of the c a n c e r p a i n e x p e r i e n c e . S p i e g e l and Bloom ( 1 9 8 3 ) , i n a s t u d y c o m p a r i n g b r e a s t c a n c e r p a t i e n t s w i t h and w i t h o u t p a i n , f o u n d t h a t p a i n c o r r e l a t e d p o s i t i v e l y w i t h each of the f o l l o w i n g : mood d i s t u r b a n c e s , d e p r e s s i o n , a n x i e t y , and f a t i g u e . I n a n o t h e r s t u d y on f e m a l e c a n c e r p a t i e n t s , L a n s k y , L i s t , and Herman (1985) r e p o r t e d t h a t women who s c o r e d h i g h on the H a m i l t o n R a t i n g S c a l e f o r D e p r e s s i o n e x p e r i e n c e d more p a i n t h a n n o n d e p r e s s e d women. F o t o p o u l o s , Graham, and Cook ( 1 9 7 9 ) , i n a s t u d y on 17 a d v a n c e d c a n c e r p a t i e n t s e x p e r i e n c i n g p a i n , f o u n d l o w e r ego s t r e n g t h s c o r e s and an i n t e r n a l r a t h e r t h a n e x t e r n a l l o c u s of c o n t r o l i n t h e p a t i e n t s e x p e r i e n c i n g p a i n . Nehemkis, C h a r t e r , Stampp, and G e r b e r ( 1 9 8 2 ) , i n a s t u d y on 25 c a n c e r p a t i e n t s , measured p a i n ( u s i n g v i s u a l a n a l o g u e s c a l e s ) and l o c u s of c o n t r o l ( u s i n g a q u e s t i o n n a i r e ) to d e t e r m i n e the r o l e of a t t r i b u t i o n t h e o r y i n the e x p e r i e n c e of c a n c e r p a i n . They f o u n d t h a t c o g n i t i v e r e a p p r a i s a l does not d i m i n i s h p a i n i n t e n s i t y , and t h a t p e r s o n s w i t h an e x t e r n a l l o c u s of c o n t r o l p e r c e i v e t h e i r p a i n as l e s s s e v e r e . B r e s s l e r , Hange, and M c G u i r e (1986) a t t e m p t e d to c h a r a c t e r i z e the p a i n e x p e r i e n c e i n a d e s c r i p t i v e s t u d y on 58 c a n c e r o u t p a t i e n t s . They were i n t e r e s t e d i n f i n d i n g out 21 i f the p a i n r e s p o n s e i n c a n c e r p a t i e n t s c o u l d be p r e d i c t e d on the b a s i s of c e r t a i n d e m o g r a p h i c v a r i a b l e s ( a g e , sex and l i v i n g s i t u a t i o n ) and c l i n i c a l v a r i a b l e s ( a c t i v i t y l e v e l , f r e q u e n c y of p o s i t i o n change and use of a n a l g e s i c s ) . Data were c o l l e c t e d u s i n g a s e m i s t r u c t u r e d q u e s t i o n n a i r e d e v e l o p e d by the r e s e a r c h e r s . D a t a a n a l y s i s l e d t h e s e a u t h o r s to c o n c l u d e t h a t p r e d i c t i o n was not p o s s i b l e , g i v e n the v a r i a b l e s t h e y had s e l e c t e d . They a t t r i b u t e d t h e i r f i n d i n g s to the u n s u i t a b i l i t y of the method, and c o n c l u d e d t h a t s t u d i e s w i t h "more i n - d e p t h d e s c r i p t i v e a n a l y s i s to i d e n t i f y new v a r i a b l e s m ight h e l p to b e t t e r c h a r a c t e r i z e the r e s p o n s e " ( p . 5 1 ) . A g a i n , i t was f o u n d t h a t to a p p r o a c h the p a t i e n t w i t h a p r e c o n c e i v e d i d e a of the p a i n e x p e r i e n c e y i e l d e d v a r i a b l e r e s u l t s w hich o f f e r e d l i t t l e to advance the u n d e r s t a n d i n g of c a n c e r p a i n . A f i n a l s t u d y , by Donovan and D i l l i o n ( 1 9 8 7 ) , t e s t e d a new s t a n d a r d c a r e p l a n f o r n u r s i n g c a n c e r p a t i e n t s . The r e s e a r c h e r s i n t e r v i e w e d 96 c a n c e r p a t i e n t s and f o u n d t h a t p a i n was p r e s e n t i n 75% of h o s p i t a l i z e d c a n c e r p a t i e n t s i n the s a mple. In a d d i t i o n , p a i n t h a t was " p e r i o d i c to c o n t i n u o u s i n n a t u r e and moderate to s e v e r e i n i n t e n s i t y " was p r e s e n t i n 67% of the p a t i e n t s i n t e r v i e w e d ( p . 9 1 ) . One i n t e r e s t i n g f i n d i n g of t h i s s t u d y r e l a t e s to a l t e r n a t i v e forms of p a i n r e l i e f . P a t i e n t s w i t h s e v e r e p a i n r e p o r t e d g r e a t e r r e l i e f f r o m d i s t r a c t i o n methods t h a n d i d p a t i e n t s r e p o r t i n g moderate p a i n . A l t h o u g h a l m o s t a l l p a t i e n t s knew 22 about and had t r i e d a l t e r n a t i v e methods of p a i n r e l i e f , many of the p a t i e n t s i n t e r v i e w e d f o u n d t h e s e methods were i n e f f e c t i v e . In a d d i t i o n , the f i n d i n g t h a t s e v e r e p a i n d i d not n e c e s s a r i l y waken the p a t i e n t s u p p o r t s e a r l i e r f i n d i n g s by M c C a f f e r y ( 1 9 7 9 ) . F i n d i n g s r e l a t e d to t h e e f f e c t s of a c t i v i t y l e v e l and r e s t on p a i n were i n c o n c l u s i v e . The most a l a r m i n g f i n d i n g i n Donovan and D i l l i o n ' s s t u d y was the f a i l u r e of n u r s e s and o t h e r h e a l t h c a r e p r o v i d e r s to r e c o g n i z e p a i n i n more t h a n h a l f of the p a t i e n t s e x p e r i e n c i n g p a i n . F u r t h e r m o r e , o n l y 43% of p a t i e n t s i n t e r v i e w e d " c o u l d r e c a l l a n u r s e h a v i n g d i s c u s s e d a n y t h i n g about t h e i r p a i n w i t h them" ( p . 8 5 ) . A l t h o u g h a g r e a t d e a l has been w r i t t e n on c a n c e r p a i n , an e x t e n s i v e l i t e r a t u r e r e v i e w r e v e a l e d t h a t l i t t l e i s known about th e p a t i e n t ' s p e r s p e c t i v e of the e x p e r i e n c e . The r e v i e w a l s o f o u n d t h a t v e r y l i t t l e r e s e a r c h had been c a r r i e d out i n t h i s a r e a . S t u d i e s w h i c h have been done r a i s e q u e s t i o n s about th e e x t e n t to w h i c h n u r s e s u n d e r s t a n d the s u b j e c t i v e n a t u r e of the p a i n e x p e r i e n c e i n c a n c e r . T h i s i s i l l u s t r a t e d by the f i n d i n g t h a t many n u r s e s f a i l to q u e s t i o n p a t i e n t s about t h e i r p a i n (Donovan & D i l l i o n , 1987), and to l i s t e n to or b e l i e v e p a t i e n t s when a d e s c r i p t i o n of t h e p a i n i s g i v e n ( M c C a f f e r y , 1 9 79). W h i l e a v a s t body of knowledge e x i s t s f o r h e a l t h p r o f e s s i o n a l s on the management of c a n c e r p a i n , e x p l i c i t g u i d e l i n e s f o r the assessmemt, p l a n n i n g , and 23 implementa t ion of h o l i s t i c care f o r these p a t i e n t s i s l a c k i n g . Summary T h i s review of the l i t e r a t u r e has attempted to p l a c e the c u r r e n t study w i t h i n the context of work done by other a u t h o r s . As much of what has been w r i t t e n i n r e l a t i o n to cancer p a i n i s not r e s e a r c h - b a s e d , the purpose of t h i s review has been to p r o v i d e an overview of what seems g e n e r a l l y accepted about p a i n , cancer p a i n and the p a t i e n t ' s p e r s p e c t i v e of the exper i ence of cancer p a i n . The o b j e c t i v e of t h i s l i t e r a t u r e review was to p r o v i d e a b a s i s upon which to develop the c u r r e n t s t u d y . In Chapter F i v e , the f i n d i n g s of t h i s study w i l l be examined and d i s c u s s e d i n r e l a t i o n to t h i s same body of l i t e r a t u r e as w e l l as the work of o ther r e s e a r c h e r s and t h e o r i s t s . 24 C h a p t e r 3 METHODOLOGY I n t r o d u c t i o n The p h e n o m e n o l o g i c a l p a r a d i g m of q u a l i t a t i v e r e s e a r c h t h e o r y and m e t h o d o l o g y has been s e l e c t e d as the most s u i t a b l e a p p r o a c h to g u i d e t h i s s t u d y . The s p e c i f i c d i r e c t i o n p r o v i d e d by t h i s m e t h o d o l o g y i n t h e s e l e c t i o n of p a r t i c i p a n t s , d a t a c o l l e c t i o n , and d a t a a n a l y s i s w i l l be d i s c u s s e d i n t h i s c h a p t e r . S e l e c t i o n of the P a r t i c i p a n t s F o l l o w i n g the p r i n c i p l e of t h e o r e t i c a l s a m p l i n g , p a r t i c i p a n t s were s e l e c t e d b e c a u s e of t h e i r w i l l i n g n e s s and a b i l i t y t o p r o v i d e the p e r s p e c t i v e of the c l i e n t g roup b e i n g s t u d i e d ( M o r s e , 1986). F u r t h e r m o r e , p a r t i c i p a n t s s e l e c t e d were v i e w e d as e x p e r t w i t n e s s e s ( A n d e r s o n , 1985) to the p a i n e x p e r i e n c e i n c a n c e r . T h i s e x p e r t i s e was d e t e r m i n e d by t h e f o l l o w i n g s e l e c t i o n c r i t e r i a . C r i t e r i a f o r S e l e c t i o n The c r i t e r i a used f o r s e l e c t i n g p a t i e n t s f o r p a r t i c i p a t i o n i n t h e s t u d y i n c l u d e d t h e f o l l o w i n g : 1) e ach p a r t i c i p a n t i s c u r r e n t l y e x p e r i e n c i n g p a i n r e l a t e d to c a n c e r ; 2) each p a r t i c i p a n t i s c u r r e n t l y u n d e r g o i n g t r e a t m e n t at the p a i n c l i n i c ; 25 3) each p a r t i c i p a n t i s 18 y e a r s of age or o l d e r ; 4) each p a r t i c i p a n t i s a b l e to speak E n g l i s h f l u e n t l y and i s a b l e to p a r t i c i p a t e i n the i n t e r v i e w p r o c e s s ; and ,' 5) each p a r t i c i p a n t must l i v e i n the l o w e r m a i n l a n d of B r i t i s h C o l u m b i a . In a d d i t i o n , an e x c l u s i o n c r i t e r i o n was d e t e r m i n e d as f o l l o w s : t h a t the p a r t i c i p a n t n ot be, i n the o p i n i o n of the a t t e n d i n g p h y s i c i a n , i n the t e r m i n a l s t a g e s of the d i s e a s e . S e l e c t i o n P r o c e d u r e P a r t i c i p a n t s were s e l e c t e d from one O n c o l o g y P a i n C l i n i c i n the G r e a t e r V a n c o u v e r A r e a . D e c i s i o n s about the s u i t a b i l i t y of p a r t i c i p a n t s f o r t h e s t u d y were made j o i n t l y by the p r i m a r y n u r s e a t t h e p a i n c l i n i c and the r e s e a r c h e r . T h i s p r o c e s s of s e l e c t i o n t o o k p l a c e o v e r a s i x week p e r i o d and i n v o l v e d t h r e e p r i m a r y n u r s e s . A l t h o u g h s e v e r a l s u i t a b l e p a r t i c i p a n t s were a v a i l a b l e a t any g i v e n t i m e , t h e p r o c e s s of s e l e c t i o n was hampered by the l a c k of a v a i l a b i l i t y of p r i m a r y n u r s e s to make the i n i t i a l a p p r o a c h to the c l i e n t s . P r i o r to the s e l e c t i o n p r o c e s s , the agency and t h e r e s e a r c h e r had a g r e e d t h a t the i n i t i a l a p p r o a c h to the p a r t i c i p a n t s would be made by the p r i m a r y n u r s e . The p r i m a r y n u r s e e x p l a i n e d to p o t e n t i a l p a r t i c i p a n t s t h a t the s t u d y was t a k i n g p l a c e and l e f t t he l e t t e r o u t l i n i n g t h e 26 s t u d y ( s e e A p p e n d i x A) f o r the p a t i e n t to r e a d . L a t e r , t h e n u r s e r e t u r n e d and i n q u i r e d as to whether the p a t i e n t was i n t e r e s t e d i n p a r t i c i p a t i n g i n the s t u d y . The n u r s e t h e n i n f o r m e d the r e s e a r c h e r of the p a t i e n t ' s d e c i s i o n . P a t i e n t s who e x p r e s s e d an i n t e r e s t i n or who had q u e s t i o n s about the s t u d y were v i s i t e d by the r e s e a r c h e r . At t h i s t i m e , t h e r e s e a r c h e r e x p l a i n e d the p u r p o s e of the s t u d y , d i s c u s s e d what p a r t i c i p a t i o n would i n v o l v e , and answered q u e s t i o n s . P a t i e n t s g e n e r a l l y r e s p o n d e d p o s i t i v e l y to the s t u d y , and o n l y t h r e e of the p a t i e n t s who r e c e i v e d the l e t t e r d e c l i n e d to p a r t i c i p a t e . Reasons f o r n o n p a r t i c i p a t i o n i n c l u d e d not h a v i n g t i m e to p a r t i c i p a t e , and h a v i n g too much to t h i n k about to be i n v o l v e d i n the s t u d y . However, a l l p a t i e n t s t h a t were a p p r o a c h e d a g r e e d t h a t a s t u d y from the p a t i e n t ' s p e r s p e c t i v e was needed. As a r e s u l t of t h i s p r o c e s s , 10 p a t i e n t s s i g n e d t h e c o n s e n t f o rm and p a r t i c i p a t e d i n the s t u d y . C h a r a c t e r i s t i c s of the P a r t i c i p a n t s Seven f e m a l e s and t h r e e males r a n g i n g i n age from 44 to 68 p a r t i c i p a t e d i n the s t u d y . The a v e r a g e age of t h e p a r t i c i p a n t s was 58 y e a r s . The t h r e e male p a r t i c i p a n t s were m a r r i e d and t h e i r w i v e s were p r e s e n t f o r the i n t e r v i e w s . Of the s e v e n f e m a l e p a r t i c i p a n t s , t h r e e l i v e d a l o n e , and f o u r were m a r r i e d and l i v e d w i t h t h e i r h u s b a n d s . None of the husbands t o o k p a r t i n the i n t e r v i e w s , a l t h o u g h two were a t 27 home a t the t i m e . Two of the f e m a l e p a r t i c i p a n t s were a c t i v e l y employed a t the t i m e of the i n t e r v i e w s . Two of the male p a r t i c i p a n t s were on s i c k l e a v e from t h e i r j o b s . The r e m a i n i n g s i x p a r t i c i p a n t s d e s c r i b e d t h e m s e l v e s as r e t i r e d . The l e n g t h of t i m e t h a t p a r t i c i p a n t s had been aware of t h e i r c a n c e r r a n g e d from 4 months to 35 y e a r s . The p e r i o d of t i m e f o r w h i c h p a r t i c i p a n t s had a t t e n d e d the p a i n c l i n i c r a n g e d from 3 months to 10 y e a r s . Of the s e v e n f e m a l e p a r t i c i p a n t s , f i v e had b r e a s t c a n c e r . Of t h e s e , t h r e e had b i l a t e r a l i n v o l v e m e n t and bone m e t a s t a s i s . T h r e e p a r t i c i p a n t s , two male and one f e m a l e , had l u n g c a n c e r . A l l t h r e e of t h e s e p a r t i c i p a n t s had s p i n a l m e t a s t a s i s . One f e m a l e p a r t i c i p a n t had c a n c e r of the n e c k . One male p a r t i c i p a n t had c a n c e r of the stomach and e s o p h a g u s . M e t a s t a s i s was not known to be p r e s e n t i n t h e s e l a t t e r two p a r t i c i p a n t s . Of the 10 p a r t i c i p a n t s , a l l had e x p e r i e n c e d r a d i a t i o n t r e a t m e n t s . Seven had undergone s u r g e r y r e l a t e d to c a n c e r . T h r e e had r e c e i v e d c h e m o therapy t r e a t m e n t s f o r c a n c e r . D a t a C o l l e c t i o n D a t a c o l l e c t i o n and a n a l y s i s w i l l be d i s c u s s e d s e p a r a t e l y . However, i m p l e m e n t a t i o n of t h i s m e t h o d o l o g y i n v o l v e d the c o n c u r r e n t o c c u r r e n c e of t h e s e p r o c e s s e s . Thus, d a t a were a n a l y z e d t h r o u g h o u t the c o l l e c t i o n p h a s e , 28 and the r e s u l t a n t a n a l y s i s i n f l u e n c e d the o n g o i n g d a t a c o l l e c t i o n p r o c e s s . C o l l e c t i o n of d a t a i n v o l v e d i n - d e p t h i n t e r v i e w s w i t h p a r t i c i p a n t s i n t h e i r homes. A s e t of sample q u e s t i o n s ( A p p e n d i x B) d e v e l o p e d f r om the l i t e r a t u r e r e v i e w , and t h e r e s e a r c h e r ' s e x p e r i e n c e g u i d e d the i n t e r v i e w p r o c e s s . No a t t e m p t was made to s t a n d a r d i z e the i n t e r v i e w p r o c e s s . R a t h e r , sample q u e s t i o n s were used when p a r t i c i p a n t s d i d not o f f e r t h i s i n f o r m a t i o n s p o n t a n e o u s l y . T h r o u g h o u t the d a t a c o l l e c t i o n p h a s e , the l i s t of sample q u e s t i o n s was m o d i f i e d to r e f l e c t themes t h a t emerged as s i g n i f i c a n t f r o m th e p a r t i c i p a n t s ' p e r s p e c t i v e . T h i s m o d i f i c a t i o n of the q u e s t i o n s f a c i l i t a t e d a more i n - d e p t h e x p l o r a t i o n w i t h i n the themes. As a r e s u l t of t h i s i n - d e p t h e x p l o r a t i o n , the i n t e r v i e w s became more f o c u s e d and a g r e a t e r u n d e r s t a n d i n g was a c h i e v e d between r e s e a r c h e r and p a r t i c i p a n t . T h i s d e e p e r u n d e r s t a n d i n g i n c r e a s e d the r i c h n e s s of the d a t a . The a c c o u n t s were c o n s t r u c t e d t h r o u g h a s e r i e s of 16 i n t e r v i e w s , w i t h a t o t a l of 10 p a r t i c i p a n t s . E i g h t of the 10 p a r t i c i p a n t s who had s i g n e d the c o n s e n t f o rm were i n v o l v e d i n the f i r s t s e r i e s of i n t e r v i e w s . Two were u n a b l e to p a r t i c i p a t e b e c a u s e of h o s p i t a l i z a t i o n . F o r t h e s e c o n d s e r i e s , two more p a r t i c i p a n t s were added. A g a i n , two were u n a b l e to p a r t i c i p a t e b e c a u s e of i l l n e s s . Thus, s i x p a r t i c i p a n t s were i n t e r v i e w e d t w i c e and f o u r p a r t i c i p a n t s 29 were i n t e r v i e w e d once, making a t o t a l of 16 i n t e r v i e w s w i t h 10 p a r t i c i p a n t s . At the end of the f i r s t s e r i e s of i n t e r v i e w s , a p r e l i m i n a r y framework was c o n s t r u c t e d to i d e n t i f y themes and r e l a t i o n s h i p s a p p a r e n t i n the d a t a t h u s f a r . T h i s framework g u i d e d the i n t e r v i e w s i n t h e s e c o n d s e r i e s . The two p a r t i c i p a n t s added i n the s e c o n d s e r i e s of i n t e r v i e w s p r o v i d e d t h e r e s e a r c h e r w i t h an e x c e l l e n t o p p o r t u n i t y to v a l i d a t e the themes and r e l a t i o n s h i p s w h i c h had been i d e n t i f i e d by the o t h e r p a r t i c i p a n t s i n the f i r s t s e r i e s of i n t e r v i e w s . The 16 i n t e r v i e w s t o o k p l a c e o v e r a two month p e r i o d . I n t e r v i e w t i m e s r a n g e d from t h r e e - q u a r t e r s of an hour to two and o n e - h a l f h o u r s . Of t h a t , a t o t a l of 18 h o u r s was a u d i o t a p e d . R e c o r d i n g t i m e s r a n g e d from 45 to 90 m i n u t e s . G e n e r a l l y , p a r t i c i p a n t s a p p e a r e d to not be b o t h e r e d by the p r e s e n c e of the t a p e r e c o r d e r d u r i n g the i n t e r v i e w s . On one o c c a s i o n , the p a r t i c i p a n t r e q u e s t e d t h e t a p e r e c o r d e r be r e s t a r t e d to add s o m e t h i n g she had f o r g o t t e n . On two o c c a s i o n s , when p e r c e p t i o n s of h e a l t h c a r e p r o f e s s i o n a l s were d i s c u s s e d , p a r t i c i p a n t s a s k e d who would be l i s t e n i n g to the t a p e s . P a r t i c i p a n t s were r e a s s u r e d t h a t o n l y t h e r e s e a r c h e r would be l i s t e n i n g to the t a p e s and d e c l i n e d the o f f e r to have t h e i r comments e r a s e d . 30 C o n s t r u c t i o n of A c c o u n t s As p r e v i o u s l y m e n t i o n e d , the a c c o u n t s were c o n s t r u c t e d d u r i n g a s e r i e s of i n - d e p t h i n t e r v i e w s w i t h 10 p a t i e n t s who had e x p e r i e n c e d c a n c e r p a i n . W i t h t h i s r e s e a r c h m e t h o d o l o g y , the a c c o u n t s were c o n s t r u c t e d v i a the i n t e r a c t i v e p r o c e s s , t h a t i s , t h r o u g h i n t e r a c t i o n between r e s e a r c h e r and p a r t i c i p a n t . A l t h o u g h the i n t e r v i e w s began u s i n g the sample q u e s t i o n s to g u i d e the p r o c e s s , i t was the answers to t h e s e , and o t h e r q u e s t i o n s t h a t were r a i s e d i n the mind of t h e r e s e a r c h e r d u r i n g the i n t e r a c t i o n , t h a t p r o v i d e d s u b s e q u e n t d i r e c t i o n f o r the i n t e r v i e w . W i t h t h i s p r o c e s s , as the r e s e a r c h e r ' s u n d e r s t a n d i n g o f the e x p e r i e n c e grew, so d i d the q u a l i t y of the q u e s t i o n s a s k e d . Thus, the i n t e r v i e w p r o c e s s f a c i l i t a t e d a more i n - d e p t h e x p l o r a t i o n of the e x p e r i e n c e . E t h i c a l C o n s i d e r a t i o n s P r i o r to d a t a c o l l e c t i o n , the p r o p o s a l f o r t h e s t u d y was a p p r o v e d by the U.B.C. B e h a v i o r a l S c i e n c e s S c r e e n i n g Committee, the a g e n c y ' s N u r s i n g R e s e a r c h Committee, and the a g e n c y ' s M e d i c a l R e s e a r c h Committee. To e n s u r e t h a t p a t i e n t s were i n f o r m e d about the s t u d y p r i o r to p a r t i c i p a t i o n and t h a t p a r t i c i p a n t s ' r i g h t s were m a i n t a i n e d , the f o l l o w i n g s t e p s were t a k e n : 1) W r i t t e n c o n s e n t was o b t a i n e d from p a r t i c i p a n t s . 2) A copy of t h e l e t t e r e x p l a i n i n g the s t u d y and the 31 c o n s e n t form was l e f t w i t h the p a r t i c i p a n t . 3) P a r t i c i p a n t s were t o l d v e r b a l l y and i n w r i t i n g t h a t n o n p a r t i c i p a t i o n , r e f u s a l to answer q u e s t i o n s , o r w i t h d r a w a l from the s t u d y would i n no way a f f e c t the t r e a t m e n t t h e y r e c e i v e d now or i n the f u t u r e . 4) P a r t i c i p a n t s were i n f o r m e d t h a t t a p e d m a t e r i a l s would be k e p t anonymous and c o n f i d e n t i a l ; t a p e s would be e r a s e d a t the c o m p l e t i o n of the s t u d y ; and t h a t w r i t t e n m a t e r i a l s would c o n t a i n no names or l a b e l s t h a t would i d e n t i f y the p a r t i c i p a n t . 5) P a r t i c i p a n t s were i n f o r m e d t h a t t h e s t u d y i n v o l v e d no known r i s k s . I n a d d i t i o n , p a r t i c i p a n t s were t o l d t h a t , i n the r e s e a r c h e r ' s e x p e r i e n c e , p a t i e n t s f o u n d the o p p o r t u n i t y to d i s c u s s t h e i r s i t u a t i o n w i t h a h e a l t h c a r e p r o f e s s i o n a l b enef i c i a l . D a ta A n a l y s i s T h r o u g h o u t the d a t a c o l l e c t i o n p r o c e s s , v e r b a t i m t r a n s c r i p t i o n s and f i e l d n o t e s were r e v i e w e d . A c o d i n g p r o c e s s e n a b l e d the r e s e a r c h e r to i d e n t i f y meaning u n i t s w i t h i n t h e d a t a ( G i o r g i , 1 9 8 5 ) . As r e l a t i o n s h i p s became a p p a r e n t w i t h i n the d a t a , meaning u n i t s were c l u s t e r e d and c o n c e p t c a t e g o r i e s were f o r m e d . The f o r m a t i o n o f c o n c e p t c a t e g o r i e s f a c i l i t a t e d the movement of the d a t a to a h i g h e r l e v e l of a b s t r a c t i o n . By r e p e a t e d a n a l y s i s of the d a t a and 32 v a l i d a t i o n of the r e s u l t s of t h i s a n a l y s i s w i t h c o n c r e t e o b s e r v a t i o n s , c o n c e p t c a t e g o r i e s w i t h i n c r e a s i n g l e v e l s of a b s t r a c t i o n were a c h i e v e d . Thus, the c o n c e p t c a t e g o r i e s became the a n a l y t i c a l framework f o r o r g a n i z a t i o n and p r e s e n t a t i o n of the d a t a . The a n a l y t i c a l framework c r e a t e d from t h e d a t a w i l l be p r e s e n t e d i n C h a p t e r F o u r . I t w i l l c r e a t e the s t r u c t u r e by w h i c h the f i n d i n g s of t h i s s t u d y can be p r e s e n t e d as a c o h e r e n t d e s c r i p t i o n of the e x p e r i e n c e of the p a t i e n t w i t h c a n c e r p a i n . Summary The m e t h o d o l o g y s e l e c t e d to g u i d e t h i s s t u d y was b a s e d on the p h e n o m e n o l o g i c a l p a r a d i g m of q u a l i t a t i v e r e s e a r c h . In k e e p i n g w i t h t h i s a p p r o a c h , p a r t i c i p a n t s were s e l e c t e d by v i r t u e of t h e i r s t a t u s as e x p e r t w i t n e s s e s to the e x p e r i e n c e of c a n c e r p a i n . Ten p a r t i c i p a n t s , s e v e n f e m a l e and t h r e e male, r a n g i n g i n age from 44 to 68, p a r t i c i p a t e d i n t h e s t u d y . S i x t e e n i n - d e p t h i n t e r v i e w s were c o n d u c t e d o v e r a two and o n e - h a l f month p e r i o d . D a t a i n c l u d e d t r a n s c r i b e d a u d i o t a p e s and f i e l d n o t e s from t h e s e i n t e r v i e w s . D a t a a n a l y s i s t o o k p l a c e b o t h c o n c u r r e n t l y w i t h , and s u b s e q u e n t t o , t h e s e i n t e r v i e w s . Thus, the a n a l y t i c p r o c e s s d i r e c t e d the f o c u s and d e p t h of the i n t e r v i e w s i n w h i c h th e r e s e a r c h e r and the p a r t i c i p a n t s c o n s t r u c t e d t h e a c c o u n t s . These a c c o u n t s a r e the f i n d i n g s of t h i s s t u d y and w i l l be p r e s e n t e d i n C h a p t e r F o u r . 3 3 C h a p t e r 4 THE PATIENT ACCOUNTS I n t r o d u c t i o n T h i s c h a p t e r w i l l p r e s e n t t h e a c c o u n t s g i v e n by p a t i e n t s who l i v e w i t h t h e e x p e r i e n c e o f c a n c e r p a i n . A l t h o u g h i t i s r e c o g n i z e d t h a t t h e a c c o u n t s r e f l e c t t h e u n i q u e e x p e r i e n c e o f e a c h p a r t i c i p a n t i n t h i s s t u d y , i t was a n t i c i p a t e d t h a t a c o l l e c t i v e o r s h a r e d e x p e r i e n c e c o u l d be a r t i c u l a t e d . T h i s s h a r e d e x p e r i e n c e was c o n s t r u c t e d f r o m common themes and c a t e g o r i e s e v i d e n t among t h e i n d i v i d u a l a c c o u n t s . These themes and c a t e g o r i e s p r o v i d e t h e f r a m e w o r k f o r p r e s e n t a t i o n o f t h e a n a l y s i s o f d a t a i n t h i s c h a p t e r . D u r i n g t h e i n t e r v i e w p r o c e s s , p a r t i c i p a n t s f r e q u e n t l y b egan t h e i r s t o r y w i t h a d e s c r i p t i o n o f what c a n c e r p a i n was l i k e . As t h e i n t e r v i e w p r o g r e s s e d , p a r t i c i p a n t s d e s c r i b e d t h e i m p a c t o f c a n c e r p a i n on t h e i r d a y - t o - d a y l i f e . Much o f t h e i m p a c t o f t h e c a n c e r p a i n was e x p l a i n e d w i t h i n t h e c o n t e x t o f t h e s t r a t e g i e s p a r t i c i p a n t s u s e d t o cope w i t h t h e p a i n . T h u s , p a r t i c i p a n t s d e s c r i b e d and e x p l a i n e d t h e e x p e r i e n c e o f c a n c e r p a i n i n r e l a t i o n t o t h r e e m a j o r themes: t h e c a n c e r p a i n , t h e i m p a c t o f c a n c e r p a i n , and t h e s t r a t e g i e s u s e d f o r c o p i n g w i t h c a n c e r p a i n and i t s i m p a c t on t h e i r w e l l - b e i n g . 34 The p r e s e n t a t i o n of the a c c o u n t s i n t h i s c h a p t e r w i l l be i n t h r e e s e c t i o n s . The f i r s t s e c t i o n p r e s e n t s the d e s c r i p t i o n s of c a n c e r p a i n as a r t i c u l a t e d by t h e p a r t i c i p a n t s . The s e c o n d s e c t i o n i s an e x p l o r a t i o n of the i m pact of c a n c e r p a i n on the p a r t i c i p a n t ' s d a y - t o - d a y l i f e . P a r t i c i p a n t s ' e x p l a n a t i o n s of how t h e y coped w i t h b o t h the p a i n and i t s i m p a c t on t h e i r l i f e w i l l be d i s c u s s e d i n the t h i r d s e c t i o n . Thus, each s e c t i o n of the c h a p t e r i s l i n k e d to the p r e v i o u s s e c t i o n i n o r d e r to p r e s e n t the whole of the e x p e r i e n c e of c a n c e r p a i n as i t was c o n s t r u c t e d by t h e p a r t i c i p a n t s . C a n c e r P a i n The f i r s t s e c t i o n of the a c c o u n t s d e s c r i b e s what c a n c e r p a i n was l i k e f o r t h e s e p a r t i c i p a n t s . P a r t i c i p a n t s u s u a l l y s t a r t e d t h e i r d e s c r i p t i o n of c a n c e r p a i n by t a l k i n g a bout the d i f f e r e n t k i n d s of p a i n s t h e y had e x p e r i e n c e d . A l t h o u g h d e s c r i p t i o n s u s u a l l y i n c l u d e d the d i f f e r e n t t y p e s of p a i n , p a r t i c i p a n t s f o c u s e d more on i n t e n s e p a i n . Most p a r t i c i p a n t s ' d e s c r i p t i o n s i n c l u d e d the f o l l o w i n g i n f o r m a t i o n : how the p a i n s t a r t e d , how bad i t became, how l o n g i t l a s t e d , and where i t was l o c a t e d . Woven i n t o t h e s e d e s c r i p t i o n s were numerous f a c t o r s t h a t p a r t i c i p a n t s p e r c e i v e d as i n c r e a s i n g or d e c r e a s i n g t h e i r p a i n . Thus, the a c c o u n t s i n t h i s s e c t i o n a r e p r e s e n t e d to r e f l e c t t h e p a i n d e s c r i p t i o n s as t h e y were t o l d by the p a r t i c i p a n t s . 35 Most p a r t i c i p a n t s began t h e i r d e s c r i p t i o n s by t a l k i n g about the d i f f e r e n t t y p e s of c a n c e r p a i n . In t h i s c h a p t e r , the l e t t e r P r e f e r s to the p a r t i c i p a n t b e i n g i n t e r v i e w e d and the l e t t e r R r e f e r s to the r e s e a r c h e r . P: To be h o n e s t , I c a n n o t g i v e you a p r o p e r d e s c r i p t i o n b e c a u s e i t [ c a n c e r p a i n ] can m a n i f e s t i t s e l f i n so many ways. R: Can you g i v e me some examples? P: W e l l sometimes, i t can be as i f someone goes a t you w i t h a k n i f e . O t h e r t i m e s i t ' s j u s t a d r a g and y o u r whole body i s a c h i n g . P: I d o n ' t mind the d u l l p a i n . T h a t I know e v e r y b o d y has a c e r t a i n amount. I t ' s t h i s s h a r p p a i n . The d u l l p a i n , f o r many p a r t i c i p a n t s , was more or l e s s c o n t i n u o u s . I t was the p a i n t h e y l i v e d w i t h e v e r y day. P: And t h e n i t [ t h e s h a r p p a i n ] w i l l go away but I s t i l l have t h a t n a g g i n g p a i n . I'm n e v e r r e a l l y w i t h o u t p a i n , some s o r t of p a i n . P: I t ' s p a i n i n g a l l the t i m e , but sometimes i t [ p a i n ] g e t s more s e v e r e . L i k e , I don't have a day w i t h o u t p a i n . F o r most p a r t i c i p a n t s , s u p e r i m p o s e d upon t h i s d u l l c o n t i n u o u s p a i n was a s e r i e s of a c u t e e p i s o d e s of p a i n . P: I ' l l g e t a s p e l l of t h a t f o r t h r e e or more days and t h e n t h a t bad p a i n w i l l go. 36 P: I t [ t h e p a i n ] a t t a c k s and i t j u s t seems to go back and f o r t h u n t i l i t s e t t l e s down a g a i n . Then i t ' s j u s t r e g u l a r p a i n a g a i n . P: T h a t ' s about i t . I get t e r r i f i c p a i n and f o r no r e a s o n i t ' s t h e r e . And t h e n i t [ t h e s h a r p p a i n ] w i l l go away, but I s t i l l have t h a t n a g g i n g p a i n . P: And i t seems l i k e i t a l l b u i l d s up i n t h e r e and t h e n i t h i t s a c r e s c e n d o and i t s t a r t s to go down. Thus, the p a i n t h e s e p a r t i c i p a n t s e x p e r i e n c e d on a day to day b a s i s was a d u l l , c o n t i n u o u s p a i n w i t h i n t e r v a l s of a c u t e , p a i n f u l e p i s o d e s . F o r most, the o n s e t of a c u t e p a i n was sudden and c a u g h t the p a r t i c i p a n t unaware. P: I t d o e s n ' t come slow when t h a t s e v e r e p a i n comes. P: The p a i n comes a l l of a sudden. I d o n ' t g e t a w a r n i n g . I c o u l d be s i t t i n g h e r e l i k e t h i s and t h e n a l l of a sudden t h a t s e v e r e p a i n s t a r t s and goes down to my f i n g e r s and I j u s t g r a b my hand b e c a u s e I am so s u r p r i s e d t h a t i t s t a r t e d . P: And I c o u l d be s i t t i n g t h e r e , j u s t l i k e t a l k i n g to you now and a l l of a sudden I would g e t one. Or e l s e I ' l l g e t a cramp... and a l l of a sudden my neck w i l l go i n t o spasm... and I am l i k e a s t a t u e . I n a d d i t i o n to s t a r t i n g s u d d e n l y and w i t h o u t w a r n i n g , a c u t e c a n c e r p a i n was d e s c r i b e d by many p a r t i c i p a n t s as u n p r e d i c t a b l e and u n c o n t r o l l a b l e . T h a t i s , t h e y c o u l d n e v e r 37 p r e v e n t i t from s t a r t i n g or a f f e c t i t s c o u r s e once i t had begun. P: But I g e t my p a i n . . . i t d o e s n ' t m a t t e r what I am d o i n g . . . I can be e n j o y i n g a movie or r e a c h i n g f o r a cup of c o f f e e and i t ' s t h e r e now! P: The p a i n i s the same no m a t t e r what I do. T h e r e d o e s n ' t seem to be any r e l a t i o n s h i p to the p a i n and a n y t h i n g I do. P: I t [ t h e a c u t e p a i n ] comes and t h e r e i s n o t h i n g i n the w o r l d you can do about i t . P: When the p a i n comes i t d o e s n ' t m a t t e r i f I'm l y i n g i n bed or i f I'm i n a hot s a u n a . When i t h i t s , i t h i t s . B e s i d e s b e i n g u n p r e d i c t a b l e and u n c o n t r o l l a b l e , a c u t e p a i n was a l s o much more i n t e n s e t h a n the d u l l p a i n . D u l l p a i n was d e s c r i b e d , by t h o s e who had i t , as l e s s i n t e n s e and more t o l e r a b l e . P: M o d e r a t e , a heavy a c h e , enough to nag you. Enough to make you not e n j o y r e a d i n g a book, n o t e n j o y w a t c h i n g a T.V. program. P: I t ' s not v e r y c o m f o r t a b l e . On the o t h e r hand i t i s not s o m e t h i n g t h a t you c o u l d not s t a n d . P: I t was p a i n you c o u l d t o l e r a t e . I d on't know how to d e s c r i b e i t . I t ' s not as bad as g e t t i n g a k i c k i n the s h i n s b u t . . . i t ' s a n n o y i n g . I t ' s s o r e . I t b o t h e r s me a l o t . Sometimes i t b o t h e r s you 38 enough t h a t e v e r y t h i n g annoys yo u . A c u t e p a i n , on the o t h e r hand was d e s c r i b e d as s h a r p and v e r y i n t e n s e . P: J u s t l i k e a k n i f e s t a b b i n g you. L i k e a p i e c e of g l a s s s l i c i n g t h r o u g h . P: I t comes... and i t ' s r e a l . . . s h a r p p a i n ! I sometimes c r y o u t , t h a t ' s how s h a r p i t i s . Sometimes the p a i n when i t h i t s me i s r e a l l y p e n e t r a t i n g , and I scream o u t . . . "Oh God!" P: I t ' s a s t a b and i t [ c a n c e r p a i n ] goes l i k e l i g h t n i n g . P: I t was a v e r y t i g h t , t i g h t f e e l i n g . V e r y s h a r p and i n t e n s e . S o r t of p r e s s i n g i n w a r d and j a b b i n g i n l i k e a k n i f e . P: I t [ c a n c e r p a i n ] comes l i k e a s h o t of l i g h t n i n g and i t s t a y s f o r h o u r s and h o u r s . When i t [ p a i n ] h i t s i t ' s s o r e , r e a l l y s o r e . A l t h o u g h most p a r t i c i p a n t s d e s c r i b e d a c u t e p a i n as u n p r e d i c t a b l e arid u n c o n t r o l l a b l e , f o r a few p a r t i c i p a n t s the o n s e t of a c u t e e p i s o d e s was a s s o c i a t e d w i t h s p e c i f i c s i t u a t i o n s . P: I t h i n k i t [ c a n c e r p a i n ] i s a c y c l e r e l a t e d to s t r e s s . And f o r me, the s t r e s s i s r e l a t e d to my work. 3 9 P: But I have l e a r n e d one t h i n g and t h a t i s not to l e t s t r e s s i n t e r f e r e . S t r e s s on top of e v e r y t h i n g e l s e makes the p a i n worse. So, 1 t r y to e l i m i n a t e as many s t r e s s f u l s i t u a t i o n s as p o s s i b l e . In a d d i t i o n , some p a r t i c i p a n t s were a b l e to p r e d i c t a t i m e of day when t h e y would e x p e r i e n c e more i n t e n s e p a i n . F o r some, the m o r n i n g was the most d i f f i c u l t . P: The p a i n i n the m o r n i n g f o r me i s the w o r s t . The p a i n b e i n g the most i n t e n s e the f i r s t h our of the day. But, f o r a n o t h e r p a r t i c i p a n t , the o p p o s i t e was t r u e . From the b e g i n n i n g when I g e t up i n the m o r n i n g I f e e l so good t h a t I a l m o s t f o r g e t t h a t I have c a n c e r . But as the day wears on, I can s e t my c l o c k by i t . When the p a i n s t a r t s I know i t i s a r o und t h r e e o ' c l o c k and t h e low t i m e i s s t a r t i n g . L a t e l y , I d on't f e e l t h a t good i n the m o r n i n g s but the p a t t e r n i s the same, worse i n the e v e n i n g s . I t i s t h e same no m a t t e r what I do. B ecause most p a r t i c i p a n t s e x p e r i e n c e d a d u l l p a i n c o n t i n u o u s l y , t h e y t a l k e d about the d u r a t i o n of p a i n i n r e l a t i o n to more a c u t e p a i n . A l t h o u g h most p a r t i c i p a n t s c o u l d p r e d i c t the o c c u r r e n c e of a c u t e e p i s o d e s of p a i n , the o n s e t and d u r a t i o n v a r i e d g r e a t l y between i n d i v i d u a l s and w i t h the same i n d i v i d u a l s o v e r t i m e . T h i s p a i n c o n t i n u e s f o r days a t a t i m e . 40 P: At l e a s t a c o u p l e of t i m e s p e r month and i t l a s t s f o r d a y s . P: I t l a s t s f o r t h r e e or more d a y s . P: Sometimes f o r a week. P: I t ' s s h a r p p a i n t h a t s t a y s f o r h o u r s , and h o u r s , and h o u r s . P: The s h a r p p a i n l a s t s anywhere from f i v e to t e n m i n u t e s to e i g h t to n i n e h o u r s . Because a c u t e p a i n made a more p r o f o u n d i m p a c t on t h e i r l i v e s , p a r t i c i p a n t s t e n d e d to i n c l u d e more d e s c r i p t i o n s of i t . However, f o r many p a r t i c i p a n t s , the p r o l o n g e d p e r i o d s of c o n t i n u o u s , n a g g i n g p a i n were v e r y d i f f i c u l t to t o l e r a t e . P: I t ' s not l i k e a t o o t h a c h e where you s u f f e r f o r a week and you g e t i t p u l l e d out and you know t h a t i t ' s gone and i t ' s not coming back. T h i s damn p a i n j u s t goes on. A l t h o u g h a l l p a r t i c i p a n t s r e f e r r e d to t h e i r p a i n as c o n t i n u o u s i n n a t u r e , t h e y a l s o made r e f e r e n c e to p e r i o d s i n w h i c h t h e y were p a i n - f r e e . F o r a few p a r t i c i p a n t s , t h e s e p e r i o d s were v e r y i n f r e q u e n t . P: T h e r e was a c o u p l e of t i m e s t h e r e . . . j u s t f o r maybe a c o u p l e of s e c o n d s or a m i n u t e , t h e r e was j u s t a b s o l u t e r e l i e f you know. I can remember t h o s e as p l a i n as i f i t was y e s t e r d a y . E v e r y t h i n g seemed to be j u s t l i k e t h a t . . . you know... 41 p e r f e c t ! Thus, c a n c e r p a i n , e i t h e r d u l l and n a g g i n g or s h a r p and i n t e n s e , was p a r t of the r e a l i t y t h e s e p a r t i c i p a n t s l i v e d w i t h e v e r y hour of e v e r y day. A c c o r d i n g to the a c c o u n t s , t h e l o c a t i o n of c a n c e r p a i n was not as s i g n i f i c a n t as the o t h e r e l e m e n t s of c a n c e r p a i n a l r e a d y d i s c u s s e d . A l t h o u g h n e a r l y a l l t h e p a r t i c i p a n t s r e f e r r e d to the l o c a t i o n of t h e i r p a i n a t some p o i n t , i t d i d not a p p e a r as i m p o r t a n t as o t h e r c h a r a c t e r i s t i c s of the p a i n . Many p a r t i c i p a n t s e x p e c t e d the l o c a t i o n of t h e i r p a i n to be the same as the l o c a t i o n of the c a n c e r . P: U s u a l l y the p a i n i s j u s t where I t h i n k the c a n c e r s i t s . I t ' s l i k e a s t i t c h i n you r s i d e t h a t can get v e r y , v e r y i n t e n s e . Because p a r t i c i p a n t s t r i e d to make s e n s e of p a i n i n r e l a t i o n to i t s l o c a t i o n , t h e y f o u n d i t c o n f u s i n g when the l o c a t i o n s were not the same. P: I t would ache i n the s h o u l d e r b l a d e and not i n my neck where the c a n c e r i s . P: I t a l m o s t f e e l s as though t h e p a i n [ f r o m b r e a s t c a n c e r ] i s t r y i n g to g e t out the ends of my f i n g e r s . P a r t i c i p a n t s a l s o l o o k e d to t h e l o c a t i o n of the p a i n f o r some e v i d e n c e as to why i t was so s e v e r e . 42 P: The p a i n was between the s h o u l d e r b l a d e s and i t was so s e v e r e . My w i f e l o o k e d a t my s h o u l d e r b l a d e and c o u l d not f i n d any lumps or bumps or b r u i s e s . When the l o c a t i o n was a s s o c i a t e d w i t h p o s s i b l e s p r e a d of the d i s e a s e , t h e n l o c a t i o n t o o k on a v e r y s p e c i f i c meaning f o r the p a r t i c i p a n t . P: Then i t s t a r t e d to r a d i a t e to the underarm and I was j u s t d o u b l e d up w i t h p a i n . And I t h o u g h t , "Oh my God, what i s h a p p e n i n g ! " A l t h o u g h p a r t i c i p a n t s v i e w e d l o c a t i o n as l e s s s i g n i f i c a n t t h a n o t h e r c h a r a c t e r i s t i c s of c a n c e r p a i n , the a c c o u n t s r e v e a l e d s e v e r a l i n s i g h t s . The l o c a t i o n of the p a i n and the d i s e a s e may or may not be the same, but p a t i e n t s t r i e d to i n t e r p r e t t h e i r p a i n i n r e l a t i o n to i t s l o c a t i o n . F o r some p a r t i c i p a n t s , p a i n l o c a t e d away from the d i s e a s e was ca u s e f o r w o r r y . And f o r some, the l o c a t i o n of p a i n was a s s o c i a t e d w i t h the s p r e a d o f the d i s e a s e . In summary, the c a n c e r p a i n t h e s e p a r t i c i p a n t s e x p e r i e n c e d on a d a y - t o - d a y b a s i s was d u l l , c o n t i n u o u s p a i n w i t h e p i s o d e s of a c u t e , i n t e n s e p a i n w h i c h a t t i m e s was i n t o l e r a b l e . T h i s a c u t e p a i n was u n p r e d i c t a b l e and u n c o n t r o l l a b l e i n r e l a t i o n to when i t would s t a r t , how i t would p r o c e e d , or how l o n g i t would l a s t . A l t h o u g h the d u l l 43 p a i n was l e s s d e v a s t a t i n g and more e a s i l y t o l e r a t e d by p a r t i c i p a n t s , p r o l o n g e d d u l l p a i n o v e r time a l s o began to wear them down. A c c o r d i n g to p a r t i c i p a n t s , t h e i m p a c t of c a n c e r p a i n on t h e i r d a y - t o - d a y l i f e was p r o f o u n d . A l t h o u g h t h e y e x p e r i e n c e d good and bad d a y s , f o r many of them c a n c e r p a i n had t a k e n o v e r t h e i r l i v e s . When as k e d what c a n c e r p a i n was l i k e , p a r t i c i p a n t s d e s c r i b e d not o n l y the the p a i n but the impact i t had on t h e i r l i v e s . The f o l l o w i n g s e c t i o n p r e s e n t s the d e s c r i p t i o n s of the i m p a c t of c a n c e r p a i n on the p a r t i c i p a n t s ' l i v e s . Impact of C a n c e r P a i n The s e c o n d major theme was the i m p a c t of c a n c e r p a i n on the d a y - t o - d a y l i v e s of the p a r t i c i p a n t s . A l t h o u g h i t would be i m p o s s i b l e to s e p a r a t e the i m p a c t of c a n c e r p a i n from the m u l t i t u d e of o t h e r t h i n g s h a p p e n i n g i n t h e c a n c e r p a t i e n t ' s l i f e , the f o c u s h e r e w i l l be t h e e f f e c t s t h a t t h e s e p a r t i c i p a n t s t o l d the r e s e a r c h e r t h a t t h e y p e r c e i v e d to be due to the impact of c a n c e r p a i n . Woven i n t o t h e s e s t o r i e s a r e numerous themes. However, p h y s i c a l , s o c i a l , and e m o t i o n a l w e l l - b e i n g were the c a t e g o r i e s i n w h i c h t h e y r e p o r t e d the most p r o f o u n d i m p a c t ; t h u s , p a r t i c i p a n t s e x p l a i n e d the i m p a c t of c a n c e r p a i n i n r e l a t i o n to t h e s e f a c e t s of t h e i r w e l l - b e i n g . 4 4 Impact on P h y s i c a l W e l l - B e i n g C a n c e r p a i n was p e r c e i v e d to have a p r o f o u n d i m p a c t on the p h y s i c a l w e l l - b e i n g of a l l the p a r t i c i p a n t s i n t e r v i e w e d . A l t h o u g h the p a r t i c i p a n t s d e s c r i b e d s e v e r a l p h y s i c a l e f f e c t s t h e y had e x p e r i e n c e d as a r e s u l t of the c a n c e r p a i n , t h o s e e f f e c t s f e l t to have the g r e a t e s t i m p a c t on t h e i r p h y s i c a l w e l l - b e i n g were i n r e l a t i o n to f a t i g u e and m o b i l i t y . Thus, the p a r t i c i p a n t s d e s c r i b e d the i m p a c t of c a n c e r p a i n on t h e i r p h y s i c a l w e l l - b e i n g i n r e l a t i o n to t h e s e f a c t o r s . P a r t i c i p a n t s t a l k e d about f a t i g u e i n r e l a t i o n to what c a u s e d i t , how i t a f f e c t e d them, and as p a r t of a v i c i o u s c y c l e w i t h c a n c e r p a i n . F a t i g u e was a major p r o b l e m f o r most p a r t i c i p a n t s . They f r e q u e n t l y a t t r i b u t e d f a t i g u e to d i s t u r b e d s l e e p p a t t e r n s c a u s e d by p a i n , and d e s c r i b e d i t as a r e s p o n s e to i n t e n s e or p r o l o n g e d p a i n . P a r t i c i p a n t s r e p o r t e d t h a t the d u l l , n a g g i n g t y p e of p a i n c a u s e d them to s l e e p r e s t l e s s l y and to awaken o f t e n . P: I s l e e p v e r y r e s t l e s s l y . At t i m e s I am up e v e r y h a l f - h o u r . O t h e r t i m e s I can s l e e p f o r two or t h r e e h o u r s a t a s t r e t c h . I w i l l wake up f i v e or s i x t i m e s a n i g h t w i t h o u t f a i l . R: I s i t the p a i n t h a t wakes you up? P: I t i s d i s c o m f o r t . In my c a s e , p a i n comes i n many f o r m s . . . p a i n and n a u s e a . You s l e e p deep and you s l e e p l i g h t . You f e e l the p a i n and you come t o . 45 P a r t i c i p a n t s r e p o r t e d t h a t when t h e y e x p e r i e n c e d a c u t e p a i n , t h e i r s l e e p d i s t u r b a n c e r e l a t e d to b e i n g k e p t awake or b e i n g awakened from s l e e p by the s e v e r e p a i n . R: Does i t [ t h e p a i n ] keep you awake? P: When i t ' s s e v e r e , i t d o e s . I might doze o f f and on but I do n ' t r e a l l y s l e e p . P: Sometimes w i t h the r e a l l y bad p a i n , i t w i l l s t a r t a f t e r I have been s l e e p i n g f o r a few h o u r s , and i t w i l l h u r t so bad i t wakes me up. In a d d i t i o n to the f a t i g u e p a r t i c i p a n t s e x p e r i e n c e d i n r e l a t i o n to d i s t u r b e d s l e e p p a t t e r n s , t h e y a l s o e x p e r i e n c e d f a t i g u e as a r e s p o n s e to i n t e n s e or p r o l o n g e d p a i n . P: I am d e p r e s s e d and e x t r e m e l y t i r e d . I t t a k e s so much e n e r g y to f i g h t the p a i n . At work I am always moving and making t h e p a i n worse and making m y s e l f more t i r e d . When I keep moving the p a i n i s alwa y s t h e r e , a l w a y s t h e r e . A g a i n , the f r u s t r a t i o n as the p a i n wears you down. In t a l k i n g about the i m p a c t of c a n c e r p a i n on t h e i r p h y s i c a l w e l l - b e i n g , p a r t i c i p a n t s d e s c r i b e d a v i c i o u s c y c l e of p a i n and f a t i g u e . As a f o r e m e n t i o n e d , c a n c e r p a i n was p e r c e i v e d as the major c a u s e of the f a t i g u e t h e s e p a r t i c i p a n t s e x p e r i e n c e d . In a d d i t i o n , p a r t i c i p a n t s r e p o r t e d t h a t t h e y e x p e r i e n c e d an i n c r e a s e d s e n s i t i v i t y t o , and a d e c r e a s e d t o l e r a n c e f o r , p a i n when t h e y were t i r e d . 46 P: And when you h a v e n ' t had enough r e s t the p a i n seems to b o t h e r you more. I c a n ' t do a l o t . P: I g e t t i r e d . Some days I c a n ' t even walk a few b l o c k s . And I f i n d i f I push m y s e l f , I n o t o n l y get t i r e d , but i n some c a s e s the p a i n g e t s w orse. So, the more f a t i g u e d I am, the worse the p a i n i s , e s p e c i a l l y i n t h e s p i n e . Thus, p a i n c a u s e d t h e i r f a t i g u e , and f a t i g u e d e c r e a s e d t h e i r a b i l i t y to d e a l w i t h p a i n . Many p a r t i c i p a n t s p e r c e i v e d f a t i g u e to be one of the major i m p a c t s of c a n c e r p a i n on t h e i r w e l l - b e i n g . P a r t i c i p a n t s r e p o r t e d t h a t c a n c e r p a i n d i s t u r b e d t h e i r s l e e p , d r a i n e d t h e i r e n e r g y , and d i m i n i s h e d t h e i r a b i l i t y to cope w i t h not o n l y the p a i n , but w i t h t h e i r d a y - t o - d a y l i v e s . A s e c o n d way i n wh i c h p a r t i c i p a n t s e x p l a i n e d the i m p a c t of c a n c e r p a i n on t h e i r p h y s i c a l w e l l - b e i n g was i n r e l a t i o n to i t s e f f e c t on m o b i l i t y . P a r t i c i p a n t s t a l k e d about a l t e r e d m o b i l i t y i n r e l a t i o n to g e n e r a l i z e d i m m o b i l i t y and s p e c i f i c movement r e s t r i c t i o n s . R e s t r i c t e d a m b u l a t i o n b e c a u s e of c a n c e r p a i n was e x p e r i e n c e d by o n l y a few of the p a r t i c i p a n t s . When i t o c c u r r e d , however, i t s i m p a c t on the p h y s i c a l w e l l - b e i n g of t h e s e p a r t i c i p a n t s was p r o f o u n d . P: I have a h a r d time w a l k i n g y e s , I have a h a r d t i m e g o i n g up the s t a i r s . I have a h a r d time d o i n g the t h i n g s a n o r m a l p e r s o n would do, g e t t i n g up, s i t t i n g down, and g e t t i n g out of bed. R: I s i t the p a i n t h a t s t o p s you? P: I t ' s t h e p a i n t h a t s t o p s me! The more I t r y to 47 g e t out of bed, or g e t up, the worse i t h u r t s . I've t h o u g h t a t t i m e s i f I do i t q u i c k l y I won't f e e l the p a i n so much. Sometimes, I p a ss out f r o m the p a i n . The s e v e r e movement r e s t r i c t i o n s d e s c r i b e d i n t h e above q u o t a t i o n were not e x p e r i e n c e d by a l l t h e p a r t i c i p a n t s i n the s t u d y . However, most p a r t i c i p a n t s gave i l l u s t r a t i o n s o f not b e i n g a b l e to use t h e i r l i m b s w i t h o u t e x p e r i e n c i n g p a i n . What f o l l o w s a r e two examples of t h e movement r e s t r i c t i o n s r e l a t e d to c a n c e r p a i n . P: You know you put y o u r c o a t on f o u r or f i v e t i m e s a day. Then s u d d e n l y you c a n ' t g e t t h e s e c o n d arm back f a r enough to put i t on. B e c a u s e when you put y o u r arm back t h e r e , you a r e i n agony! P: When I put my arm back, i t i s a l m o s t l i k e a w a l l . I am s t u c k t h e r e and I can go no f u r t h e r . The p a i n i s j u s t coming back and oh my g o o d n e s s ! F o r many, c a n c e r p a i n l i m i t e d m o b i l i t y b e c a u s e movement t r i g g e r e d e p i s o d e s of a c u t e p a i n . I n a d d i t i o n , many p a r t i c i p a n t s f o u n d t h a t i n t e n s e p a i n d r a i n e d t h e i r e n e r g y and t h e r e f o r e i m m o b i l i z e d them. P: F o r m y s e l f , when I am i n s t r o n g p a i n . . . I j u s t s i t t h e r e and be i n v a d e d by t h e p a i n . I d i d n ' t have the s t r e n g t h to do a n y t h i n g f o r m y s e l f . I n a d d i t i o n to t h e c y c l e p a r t i c i p a n t s a r t i c u l a t e d w i t h r e g a r d to p a i n and f a t i g u e , t h e y a l s o i d e n t i f i e d a v i c i o u s c y c l e i n r e l a t i o n to f a t i g u e and m o b i l i t y . As a l r e a d y 48 m e n t i o n e d , p r o l o n g e d p a i n ( a s i n d u l l c o n t i n u o u s p a i n ) and i n t e n s e p a i n ( a c u t e e p i s o d e s ) c a u s e d extreme f a t i g u e i n a l l p a r t i c i p a n t s . A l t h o u g h most p a r t i c i p a n t s ' p a i n was c i t e d as the major f a c t o r l i m i t i n g t h e i r m o b i l i t y , s e v e r a l p a r t i c i p a n t s r e p o r t e d t h a t t h e y were s i m p l y too t i r e d to move a b o u t . Thus, p a r t i c i p a n t s e x p l a i n e d the im p a c t of c a n c e r p a i n on t h e i r p h y s i c a l w e l l - b e i n g i n r e l a t i o n to f a t i g u e and a l t e r e d m o b i l i t y . The e f f e c t of c a n c e r p a i n on s l e e p and the r e s p o n s e of t h e i n d i v i d u a l to p r o l o n g e d or v e r y i n t e n s e p a i n were i d e n t i f i e d as the major s o u r c e s of f a t i g u e f o r t h e s e p a r t i c i p a n t s . In a d d i t i o n , p a r t i c i p a n t s r e p o r t e d t h a t f a t i g u e i n c r e a s e d t h e i r s e n s i t i v i t y to and d i m i n i s h e d t h e i r t o l e r a n c e f o r p a i n . A l t e r e d m o b i l i t y , such as r e s t r i c t e d l i m b movement or the i n a b i l i t y to a m b u l a t e , was a t t r i b u t e d to c a n c e r p a i n or f a t i g u e . Impact on S o c i a l W e l l - B e i n g A c c o r d i n g to the p a r t i c i p a n t s i n t e r v i e w e d , c a n c e r p a i n had a p r o f o u n d e f f e c t on s o c i a l w e l l - b e i n g . A l t h o u g h the n a t u r e of the im p a c t v a r i e d w i t h i n d i v i d u a l s i t u a t i o n s , the g r e a t e s t i m p a c t of c a n c e r p a i n on t h e i r s o c i a l w e l l - b e i n g was d e s c r i b e d i n r e l a t i o n to r o l e s and r e l a t i o n s h i p s . Thus, the f o l l o w i n g s e c t i o n i s a d i s c u s s i o n of how p a r t i c i p a n t s d e s c r i b e d t h e i m p a c t of c a n c e r p a i n on r o l e s and r e l a t i o n s h i p s . 49 A l l p a r t i c i p a n t s had e x p e r i e n c e d r o l e changes r e l a t e d to l i v i n g w i t h c a n c e r p a i n . F o r many p a r t i c i p a n t s , p a i n i n t e r f e r e d w i t h or p r e v e n t e d p e r f o r m a n c e of p r e v i o u s r o l e s . F o r o t h e r s , c a n c e r p r e c i p i t a t e d r o l e s t r a i n , n e c e s s i t a t i n g m o d i f i c a t i o n of e x i s t i n g r o l e s . The two a r e a s i n wh i c h many of t h e s e r o l e changes o c c u r r e d were a t work and i n t h e f a m i l y . P a r t i c i p a n t s t a l k e d about t h e s e r o l e changes w i t h i n t h e c o n t e x t of the meaning t h e y had a t t r i b u t e d to the s p e c i f i c r o l e . The r o l e changes e x p e r i e n c e d by t h e s e p a r t i c i p a n t s i n c l u d e d r o l e l o s s , r o l e s t r a i n , and r o l e m o d i f i c a t i o n . Where r o l e l o s s o c c u r r e d f o r p a r t i c i p a n t s , c a n c e r p a i n and the f a t i g u e and i m m o b i l i t y r e l a t e d to c a n c e r p a i n a c c o u n t e d f o r t h e s e l o s s e s . P: So, I went back to s c h o o l , but I j u s t c o u l d n ' t c o p e . I c o u l d n ' t cope w i t h the p a i n . I was t i r e d . I was e x t r e m e l y t i r e d . P: T h e r e a r e so many t h i n g s t h a t you c a n ' t do t h a t you d o n ' t t h i n k about u n t i l you c a n ' t do them. I f s o m e t h i n g t a k e s two hands, t h e n the p a i n s t o p s you. You c a n ' t do i t . P: E v e r y t h i n g I do seems to be more t i r i n g . R: I n what way? P: I t ' s b e c a u s e of the p a i n . . . and b e c a u s e I t a k e l o n g e r to do e v e r y t h i n g . . . l i k e s h o p p i n g . . . I j u s t c a n ' t do i t . 50 P: I c a n ' t r e a l l y do a n y t h i n g f o r m y s e l f . I have someone to c l e a n . . . someone to do the y a r d work. I used to put i n a r e a l b i g g a r d e n and e v e r y t h i n g Then I g o t t h i s p a i n . . . I c a n ' t g e t a r o u n d and... i t [ t h e p a i n ] j u s t wears me down. In a d d i t i o n , t h e u n p r e d i c t a b i l i t y and u n c o n t r o l l a b i l i t y of a c u t e e p i s o d e s of c a n c e r p a i n a l s o c a u s e d p a r t i c i p a n t s to r e l i n q u i s h r o l e s . P: You can go to work some d a y s , but t h e r e a r e many days you c a n ' t work b e c a u s e of the p a i n . P: But you n e v e r know each day when you g e t up i f t h p a i n i s g o i n g to be too bad or i t won't be. So you d o n ' t want to t a k e on a n y t h i n g i n c a s e you c a n ' t f o l l o w t h r o u g h . P: I would l i k e to work, but I f e e l so g u i l t y on t h e days when I c a n n o t go i n . Many p a r t i c i p a n t s , however, r e t a i n e d r o l e s i n w h i c h t h e y e x p e r i e n c e d a g r e a t d e a l of r o l e s t r a i n . P: My p r e s e n t j o b i s v e r y s t r e s s f u l . And f o r me the p a i n i s made worse by the s t r e s s . And you a r e s i c k and you a r e t r y i n g to work and you c a n ' t work. Where r o l e s were r e t a i n e d i n the work s e t t i n g , the r e a s o n s , f o r some, were v e r y p r a g m a t i c . P: At my age, I am p u s h i n g s i x t y . . . who i s g o i n g to h i r e me i f I q u i t t h i s j o b ? 51 P: Wi t h my p r e s e n t h e a l t h s i t u a t i o n , I c a n n o t a f f o r d to q u i t b e c a u s e of t h e b e n e f i t s . I f I were r i c h , I would j u s t q u i t ! But f o r o t h e r s , r e l u c t a n c e to g i v e up c e r t a i n r o l e s was a s s o c i a t e d w i t h the meaning the r o l e had f o r them. P: I mean work i s p a r t o f y o u r l i f e . I mean you have g o t to be d o i n g s o m e t h i n g . P: I was a l w a y s used to b e i n g a r e a l h a r d w orker and b e i n g a b l e to do t h i n g s on my own w i t h o u t h a v i n g to a sk o t h e r p e o p l e to do t h i n g s . F o r some p a r t i c i p a n t s , f e e l i n g s of s e l f - w o r t h were a s s o c i a t e d w i t h s p e c i f i c r o l e s . T hus, a n t i c i p a t e d l o s s e s i n g i v i n g up t h e s e r o l e s r e l a t e d to t h e p e r s o n ' s s e n s e o f s e l f - w o r t h . P: Then I would g e t mad a t m y s e l f . T h i n g s I c o u l d o r d i n a r i l y do w i t h no sweat. The p a i n made i t h a r d e r f o r me to do them. R: So p a r t of i t was not b e i n g a b l e to do t h e t h i n g s you would o r d i n a r i l y do? P: I t h i n k t h a t a g r e a t p a r t of anybody's s u f f e r i n g _L S « • • 3. • • • R: L o s s ? P: Y e s , i t r e a l l y i s . I h e a r a l o t of p e o p l e s a y , i f o n l y I c o u l d r e t i r e and n e v e r work a g a i n , i t would be so g r e a t . They d o n ' t know what i t ' s l i k e . When I c o u l d g e t t h i n g s to work... w e l l , I f e l t good about i t ! 52 P: I had t h i s pain at work and I dis c u s s e d i t with a few c l o s e f r i e n d s . T h e i r r e a c t i o n was, what are you doing here? Why don't you q u i t t h i s dammed job and f o r g e t about i t ? And I s a i d to them, i f you were i n my place f o r one day, you might change your mind about q u i t t i n g your job. I kind of think we are a cr e a t u r e of h a b i t programmed to do something and you do i t , and do i t , and do i t . And when i t i s taken away from you... you are l o s t . Although much of the r e l u c t a n c e to give up r o l e s was a s s o c i a t e d with the need to work, r o l e s t r a i n w i t h i n the f a m i l y was a l s o problematic f o r many p a r t i c i p a n t s . Because many of these r o l e s were amenable to d e l e g a t i o n , the r e l u c t a n c e to give up these r o l e s was o f t e n r e l a t e d to personal e x p e c t a t i o n s p a r t i c i p a n t s held f o r themselves. P: And i t ' s f r u s t r a t i n g . My husband i s very p a t i e n t , so I am lucky that way. But you do get f r u s t r a t e d when you go to do something and you th i n k , "Oh God, I can't do i t . " That, I t h i n k , i s one of the hardest things f o r me! I get f r u s t r a t e d because I can't do t h i n g s , l i t t l e t h ings that don't amount to much, but I f e e l that I should be able to do. P: I t ' s not up to her [h i s wife] to go out and b r i n g the wood i n t o the basement. I t ' s my job. And I ' l l p i l e two or three pieces on, and get half-way around, and have to drop them because of the p a i n . Thus, according to many p a r t i c i p a n t s , g i v i n g up r o l e s was very d i f f i c u l t . P a r t i c i p a n t s a l s o explained that cancer pain made them r e l u c t a n t to take on new r o l e s . These 53 . i n d i v i d u a l s a n t i c i p a t e d that they would f a i l i n these new r o l e s because of the pa i n . P: The pain i s constant with me. That i s what I am sa y i n g . . . who would ever want to l i v e with me? P: I have been t o l d to take up hobbies or vo l u n t e e r work. But you don't f e e l . . . you know i f you don't have the energy to walk without t a k i n g a r e s t every few f e e t , then you don't have the energy you need to s t a r t a new hobby. And the p a i n . . . i t bothers me a l o t . Thus, the p a r t i c i p a n t s i n t e r v i e w e d p e r c e i v e d that cancer pain had p r e c i p i t a t e d many r o l e s h i f t s i n t h e i r l i v e s . The process of g i v i n g up, modifying, or r e t a i n i n g r o l e s f o r these p a r t i c i p a n t s presented a major c h a l l e n g e . However, d e c i s i o n s about the r o l e s h i f t s seemed to be more r e l a t e d to the meaning a t t r i b u t e d to the r o l e than to the r o l e i t s e l f . Although p a r t i c i p a n t s i n t e r p r e t e d the impact on t h e i r s o c i a l w e l l - b e i n g i n very i n d i v i d u a l ways, i t was commonly held that r o l e s i n v o l v i n g the i n d i v i d u a l ' s f e e l i n g s of s e l f - w o r t h were the most d i f f i c u l t to r e l i n q u i s h . This appeared to be true both f o r r o l e s at work and those w i t h i n the f a m i l y . According to the p a r t i c i p a n t s i n t e r v i e w e d , cancer pain a l s o placed a s t r a i n on t h e i r r e l a t i o n s h i p s . Most c i t e d the l i m i t a t i o n s imposed by the pain on t h e i r s o c i a l communication and i n t e r a c t i o n as the major source of s t r a i n on r e l a t i o n s h i p s . Although a l l r e l a t i o n s h i p s were b e l i e v e d 54 to be a f f e c t e d by t h e p a i n , most p a r t i c i p a n t s r e p o r t e d t h a t the g r e a t e s t i m p a c t was on r e l a t i o n s h i p s w i t h i n the f a m i l y . A l l the p a r t i c i p a n t s e i t h e r l i v e d w i t h , or m a i n t a i n e d c o n t a c t w i t h , t h e i r c h i l d r e n . Thus, f o r many, i t was the r e l a t i o n s h i p s w i t h t h e i r c h i l d r e n (young and a d u l t ) t h a t were of g r e a t e s t c o n c e r n to them. Many p a r t c i p a n t s r e p o r t e d w i t h d r a w i n g when t h e y were i n s e v e r e p a i n i n o r d e r to p r o t e c t o t h e r s from e x p e r i e n c i n g t h e i r p a i n . P: I t r y to keep the p a i n from my c h i l d r e n as much as I c a n . R: That must be v e r y h a r d f o r you. P: I f I am i n p a i n t h e n I would r a t h e r w i t h d r a w so t h e y won't see me. R: Uhmmm... P: I d o n ' t want to i n v o l v e them too much y e t . They a r e too young. I want to s h i e l d them as much as I c a n . A l t h o u g h most p a r t i c i p a n t s i s o l a t e d t h e m s e l v e s t o p r o t e c t o t h e r s f r o m t h e i r p a i n , w i t h d r a w a l a l s o p r o v i d e d a needed b u f f e r f o r t h e p a t i e n t . P: When the p a i n i s r e a l l y bad, I f e e l l i k e I would l i k e to go i n t o my bedroom and s o r t of s u f f e r m y s e l f . I al w a y s f e e l b a d l y i f my husband or my boy have to see me. They know t h a t I am r e a l l y i n p a i n but I d o n ' t l i k e them to have to e x p e r i e n c e i t . I j u s t s o r t of cla m up and s u f f e r i n s i l e n c e . 55 Such i s o l a t i o n p r o t e c t e d the p a t i e n t from having to i n t e r a c t and communicate with o t h e r s . For p a t i e n t s i n severe p a i n , t h i s withdrawal could be p a r t i c u l a r l y important. P: At the moment I was having severe p a i n , I would not be able to answer your q u e s t i o n s . I j u s t shut up and go i n s i d e . I f I am f o r c e d to give some answer, i t would be s h o r t , l e s s of myself as p o s s i b l e i n those answers. I give others as l i t t l e i n f o r m a t i o n as p o s s i b l e when I am i n p a i n , even about how they might help me. P a r t i c i p a n t s p e r c e i v e d that t h i s l i m i t e d a b i l i t y to i n t e r a c t and communicate with others because of t h e i r pain was not always understood by o t h e r s , even a d u l t c h i l d r e n . P: L i k e when I can't go somewhere with my son, he can't seem to understand that when I am i n pain I can't see anyone or go out. The more I t r y and e x p l a i n i t to him, the more he turns me o f f . He doesn't say a word, but that look on h i s face t e l l s me that he has shut h i s mind to what I am t e l l i n g him. Now, I j u s t f e e l that i f I could take t h i s pain and throw i t at him f o r twenty seconds so he could understand that i t i s h u r t i n g me! And that i s why I don't want to go. The i n a b i l i t y to perform expected r o l e s w i t h i n the f a m i l y a l s o a f f e c t e d r e l a t i o n s h i p s between p a r t i c i p a n t s and t h e i r f a m i l y members. For many p a r t i c i p a n t s , the s o c i a l i n t e r a c t i o n s and outings so necessary to f a m i l y r e l a t i o n s h i p s were not a v a i l a b l e to them because of the pain or the l i m i t a t i o n s imposed by the p a i n . P: I t ' s not l i k e l e a d i n g a normal l i f e . I am very l i m i t e d . We can't t r a v e l , we can't do any s o r t of t h i n g . You are more or l e s s c o n f i n e d to a home 56 l i f e i f you need an enema every n i g h t . Where are you going to go? The food has to be cooked so i t i s not spi c e d because i f I eat spi c e d food then I climb the w a l l s . Our s o c i a l behavior... g e t t i n g together and e a t i n g . . . i s a b i g t h i n g , you know... among human beings. R: Yes, I know. P: This i s a l l suddenly taken from me. You are very, very l i m i t e d i n what you can enjoy. What i s l e f t f o r enjoyment? Even i f you walk around the block, you are h u r t i n g . This i s not much fun! Thus, pain i n t e r f e r e d with communication, an e s s e n t i a l process i n the b u i l d i n g and maintenance of r e l a t i o n s h i p s . S o c i a l i n t e r a c t i o n was curbed because of the l i m i t a t i o n s imposed by the pain and the p a r t i c i p a n t s ' b e l i e f that others should not see them i n p a i n . This i s o l a t i o n , which occurred f r e q e n t l y f o r some p a r t i c i p a n t s , a f f e c t e d the r e l a t i o n s h i p s between p a r t i c i p a n t s and t h e i r f a m i l y members. In a d d i t i o n , r e l a t i o n s h i p s were s t r a i n e d when others could not understand the l i m i t a t i o n s imposed by the p a i n . Impact on Emotional Well-Being A l l p a r t i c i p a n t s i n t e r v i e w e d p e r c e i v e d the impact of cancer pain on t h e i r emotional w e l l - b e i n g to be profound. Although a great many f e e l i n g s and mood s t a t e s were experienced, the g r e a t e s t impact on emotional w e l l - b e i n g was de s c r i b e d i n r e l a t i o n to three c a t e g o r i e s of f e e l i n g s : a n x i e t y and f e a r , f r u s t r a t i o n and anger, and h e l p l e s s n e s s and l o s s of c o n t r o l . In t h e i r accounts of these f e e l i n g s , 5 7 p a r t i c i p a n t s i d e n t i f i e d the pe r c e i v e d source of s p e c i f i c f e e l i n g s . In a d d i t i o n , they d e s c r i b e d the extremes of c e r t a i n f e e l i n g s and mood s t a t e s they had experienced. Thus, the f o l l o w i n g d i s c u s s i o n w i l l i l l u s t r a t e how p a r t i c i p a n t s d e s c r i b e d the impact of cancer pain on t h e i r emotional w e l l - b e i n g i n r e l a t i o n to s p e c i f i c f e e l i n g s and moods they experienced. According to the p a r t i c i p a n t s i n t e r v i e w e d , f e e l i n g s of anxiety and fe a r were common, and among the e a r l i e s t emotional r e a c t i o n s to cancer p a i n . For many p a r t i c i p a n t s , these f e e l i n g s were a s s o c i a t e d with the meaning a t t r i b u t e d to the p a i n . P a r t i c i p a n t s ' knowledge about, and past experience with, cancer pain o f t e n accounted f o r the meaning a t t r i b u t e d to the p a i n . A l l p a r t i c i p a n t s reported that a major source of fe a r and a n x i e t y was not knowing the source of t h e i r pain or what i t meant. P: The main t h i n g that bothers me now i s the fe a r of the other p a i n . "Oh... what's wrong here?" I imagine i t w i l l go on f o r years whenever there i s pain that I don't understand. I would be l e s s f e a r f u l i f t h i s t h i n g i n the breast bone hadn't developed. What bothers me i s that we did n ' t know what was causing the p a i n . The doctor thought i t was due to r a d i a t i o n and the cancer c l i n i c thought i t was due to surgery. Well, I j u s t hope i t ' s not r e l a t e d to the d i s e a s e ! Thus, not knowing and being able to v a l i d a t e with others placed a tremendous emotional burden on these p a t i e n t s . For 58 most p a r t i c i p a n t s , p a i n meant s o m e t h i n g was wrong. F e a r of c a n c e r r e c u r r e n c e was p a r t of the r e a l i t y t h e s e p a r t i c i p a n t s l i v e d w i t h e v e r y day. P: I do n ' t know how to e x p l a i n i t . You a r e a l w a y s t a u g h t t h a t p a i n means s o m e t h i n g i s wrong. And as a r u l e I am not a p e r s o n who has aches and p a i n s . So, I a s k e d the d o c t o r to do a c o m p l e t e c h e c k of my l u n g s w h i c h was w o r r y i n g me as I had two p a r e n t s d i e of c a n c e r of t h e l u n g . So, I was w o r r i e d about t h e l u n g s . Much o f the w o r r y e x p e r i e n c e d by t h e s e p a r t i c i p a n t s r e l a t e d to t h e i r p a s t e x p e r i e n c e w i t h c a n c e r p a i n . P: E v e r y t i m e I t e l l them where I h u r t and i t may t a k e two or t h r e e t i m e s I have to t e l l them. But e v e r y t i m e I h u r t , t h e y f i n d t h e r e i s a new g r o w t h . Thus, f o r p a t i e n t s who had a l r e a d y e x p e r i e n c e d s p r e a d of t h e d i s e a s e , new p a i n was a major c a u s e f o r a n x i e t y . As w e l l as an i n d i c a t o r of d i s e a s e , p a i n was c o n s i d e r e d by many as a measure of t h e s u c c e s s of t r e a t m e n t . That i s , p a i n f o l l o w i n g t r e a t m e n t evoked f e a r s t h a t the t r e a t m e n t had not worked. P: So t h a t was i t . I was f e e l i n g g r e a t and t h e n i t s t a r t e d . The p a i n s t a r t e d to come and i t nagged and nagged. R: Was t h i s the same k i n d of p a i n you had b e f o r e ? P: No, t h i s was a b u r n i n g p a i n and much d e e p e r . I t came and i t w o u l d n ' t l e t up. And I t h o u g h t . . . t h e y d i d n ' t g e t i t a l l . 59 Thus, p a i n was a c o n s t a n t s o u r c e of w o r r y f o r t h e s e p a r t i c i p a n t s . I n a d d i t i o n to the meaning of p a i n , p a r t i c i p a n t s w o r r i e d a b o u t what would have t o be done to c o n t r o l t h e p a i n . P: When you s t a r t t h i n k i n g about the c a n c e r . . . and I know I do, you wonder, where i t ' s g o i n g . . . or what i s g o i n g to be n e x t . You wonder what i s g o i n g on i n s i d e . You a r e w o n d e r i n g how much t h e y w i l l have to c u t i n t o you t o t a k e away t h e p a i n . Where p a r t i c i p a n t s had e x p e r i e n c e d s e v e r e p a i n w h i c h came on v e r y s u d d e n l y , a n t i c i p a t i o n o f t h e r e t u r n of t h i s p a i n g e n e r a t e d i n t e n s e f e e l i n g s of f e a r and a n x i e t y . P: I t g e t s me u p s e t j u s t to t a l k about i t [ p a i n ] . I d o n ' t mean t o . I say t o m y s e l f t h a t I am not g o i n g t o g e t u p s e t about i t b e c a u s e I have to f a c e i t . R: What you a r e d e a l i n g w i t h i s v e r y u p s e t t i n g and i t sounds l i k e much o f t h e time you a r e f a c i n g i t a l o n e . P: W e l l t h a t ' s what i t [ t h e p a i n ] does and I am s c a r e d . I am a c t u a l l y s c a r e d of g e t t i n g them [ e p i s o d e s of s e v e r e p a i n ] a g a i n . R: T h a t ' s u n d e r s t a n d a b l e when you say what t h e p a i n was l i k e . P: I am s c a r e d of g e t t i n g them a g a i n . L i k e I am w a i t i n g f o r them to come a g a i n . And I know I am g o i n g to g e t them and y e t I am s t i l l s c a r e d . Thus, f e e l i n g s of a n x i e t y and f e a r were d e s c r i b e d as common e m o t i o n a l r e s p o n s e s to c a n c e r p a i n . P a r t i c i p a n t s e x p l a i n e d t h i s r e s p o n s e i n r e l a t i o n to not knowing t h e cau s e of the p a i n , t h e s p e c i f i c meaning t h e y a s s i g n e d to p a i n , and 60 t h e i r past experience with cancer p a i n . Although p a r t i c i p a n t s experienced these f e e l i n g s with a l l types of cancer p a i n , i t was the severe pain with sudden onset that t r i g g e r e d the most inte n s e f e e l i n g s of fe a r and a n x i e t y . A l l p a r t i c i p a n t s reported f e e l i n g s of f r u s t r a t i o n and anger as part of t h e i r emotional r e a c t i o n to p a i n . For some, the l i m i t a t i o n s that cancer pain imposed on energy l e v e l s and t h e i r a b i l i t y to c a r r y out d a i l y a c t i v i t i e s independently was a source of f r u s t r a t i o n . Each time you move, i t i s p a i n f u l . . . under the arms... and i n the neck. And f o r me, i t makes me angry that I cannot do and reach the things I want to . I have to p u l l , I cannot l i f t . I am too weak and i t hurts too much. For me, i t i s so f r u s t r a t i n g ! And f o r ot h e r s , the inte n s e pain that made them l o s e c o n t r o l aroused f e e l i n g s of anger and f r u s t r a t i o n . I t ' s f r u s t r a t i n g . I f i n d f o r me that the pain i s f r u s t r a t i n g . Because suddenly i t ' s a l o s s of c o n t r o l . I t j u s t invades you and you have to put that aside and f i n d a way to r e g a i n c o n t r o l . You have no c o n t r o l , a b s o l u t e l y no c o n t r o l . I t ' s taken me up u n t i l about the l a s t year to to f i g u r e that I have no [drawls to emphasize t h i s p o i n t ] c o n t r o l over my l i f e , none at a l l . Although at t h e i r many p a r t i c i p a n t s p e r c e i v e d l o s s of expressed anger c o n t r o l , others and f r u s t r a t i o n used the anger to 61 provide the s t r e n g t h they needed to o b t a i n and maintain c o n t r o l of t h e i r pain and t h e i r s i t u a t i o n . P: I am d r i v e n by anger. As f a r as the cancer i s concerned, I am d e a l i n g with i t i n a more p o s i t i v e way because I am so d r i v e n . I use my anger to get i n f o r m a t i o n , to get the help I need. You know I put my mind to i t and use my anger i n a f i g h t i n g way ! Thus, f o r some, the f e e l i n g of anger p r e c i p i t a t e d by the cancer pain was a very p o s i t i v e i n f l u e n c e . For ot h e r s , however, the severe pain was overwhelming and caused them to completely l o s e c o n t r o l . One p a r t i c i p a n t explained how h i s f e e l i n g s of anger and f r u s t r a t i o n t r i g g e r e d a very v i o l e n t r e a c t i o n . P: I know I can be p r e t t y v i o l e n t when I get t h i s prolonged p a i n . And normally, I don't th i n k I am a v i o l e n t person. I found myself l a t e l y , not at the time, but l a t e r when I thought about what I done, I got depressed. Normally, t h a t ' s not me. R: What do you mean by v i o l e n t ? P: Well, I get v i o l e n t ! My wife t r i e s to be n i c e to me and I am v i o l e n t to her. I push her or grab her, or thre a t e n her. Well, I have at times. I have grabbed her and I have grabbed her so hard that I have b r u i s e d her. This i s not normal, not fo r me anyway. When you are i n pain, there i s no reason to be v i o l e n t to someone who i s t r y i n g to help you. I don't understand i t , I don't know why I do i t . R: Does t h i s happen often? P: Not too o f t e n now... f o r a while I was g e t t i n g some p r e t t y v i o l e n t stages. I am not sure i f that was the pa i n , the medication, or a combination of them both. Or i t could be my own personal resentment, I don't know. I j u s t know i t has to 62 s t o p . F o r some, f e e l i n g s of anger s t r e n g t h e n e d them i n a p o s i t i v e way t o g e t h e l p , and to f i g h t to improve t h e i r s i t u a t i o n . But f o r o t h e r s , f e e l i n g s of f r u s t r a t i o n and anger overwhelmed them, c a u s i n g l o s s of c o n t r o l and sometimes v i o l e n c e . Where p a r t i c i p a n t s e x p e r i e n c e d f e e l i n g s o f anger and f r u s t r a t i o n i n r e l a t i o n to t h e i r c a n c e r p a i n , t h e i n a b i l i t y to p e r f o r m e x p e c t e d r o l e s and l o s s of c o n t r o l o v e r t h e i r s i t u a t i o n o f t e n a c c o u n t e d f o r t h i s . A l t h o u g h f r u s t r a t i o n and an g e r were common r e a c t i o n s to the i n a b i l i t y to c o n t r o l p a i n , r e p e a t e d p a i n f u l e p i s o d e s or p r o l o n g e d p a i n sometimes t r i g g e r e d f e e l i n g s o f extreme h e l p l e s s n e s s . P: Y e s . . . and you f e e l so weak... and h e l p l e s s . You a c t u a l l y f e e l h e l p l e s s ! P: I am so d e t e r m i n e d one o f t h e s e d a y s . . . t h a t p a i n i s g o i n g to go! T h a t ' s a l l t h e r e i s to i t ! But whenever i t comes, I go r i g h t back t o s q u a r e one. I have to b u i l d up my c o n f i d e n c e and b u i l d up my t o l e r a n c e a g a i n . I have to t a k e m y s e l f o f f the m e d i c a t i o n a g a i n and i t j u s t seems l i k e a n e v e r - e n d i n g b a t t l e . You know... i t n e v e r e n d s . P: I t h i n k I am g e t t i n g used to i t now. I k i n d of f i g u r e I know what's g o i n g to happen when I g e t a c e r t a i n t y p e of p a i n . R e p e a t e d b o u t s of p r o l o n g e d o r s e v e r e p a i n i n t e n s i f i e d t h e f e e l i n g s of h e l p l e s s n e s s and l o s s of c o n t r o l o v e r t h e i r 63 s i t u a t i o n . The outcome of these i n t e n s e f e e l i n g s , coupled with the repeated bouts of acute p a i n , was o f t e n a depressed mood. P: So then I was g e t t i n g more depressed and down and the pain seemed... I couldn't take any more pa i n ! I t seemed to be o v e r r i d i n g e v e r y t h i n g and so i t went, on and on. To communicate how extreme t h e i r f e e l i n g s of h e l p l e s s n e s s were, p a r t i c i p a n t s t a l k e d about t r y i n g to escape from the s u f f e r i n g . In t h i s regard, s e v e r a l p a r t i c i p a n t s shared t h e i r thoughts about s u i c i d e . P: Well, you th i n k i f I was outside and a c c i d e n t a l l y h i t by a car then i t would be over. Or i f you up and took the whole damn b o t t l e then i t would be over . R: So you th i n k of ways to end the s u f f e r i n g you have experienced ? P: You r e a l l y would l i k e to get out of the s i t u a t i o n , no matter what the c o s t . Sometimes, I don't l i k e those thoughts. R: Do you get them very often? P: Not so much now, r i g h t a f t e r the o p e r a t i o n I had them [ s u i c i d a l thoughts] f o r q u i t e awhile. Then things s t a r t e d to go my way. I s t a r t e d to f e e l b e t t e r . I went back to work and s t a r t e d to f e e l good . Although a l l p a r t i c i p a n t s had experienced s u i c i d a l thoughts, f o r most, these thoughts were t r a n s i t o r y and more l i k e l y to occur during periods of int e n s e p a i n . 64 P: Of course when you are f e e l i n g good, you say you never would do t h a t . When you are r e a l l y h u r t i n g and nothing seems to work, when you take your medication and i t s t i l l doesn't ease o f f , during that time... a l l s o r t s of s i l l y thoughts come i n t o your head. I understand people who go and, i n those moments, end i t a l l . And they say i t ' s not worth i t . There i s no hope anyway that you w i l l get b e t t e r . The doctors don't t h i n k you w i l l anyway. While s u i c i d a l thoughts were u s u a l l y d e s c r i b e d as t r a n s i t o r y , p a r t i c i p a n t s feared them and the f e e l i n g s of h e l p l e s s n e s s they produced. P: Sometimes I get r e a l l y s cared. I thi n k to myself what have I got to l o s e i f I take the whole b o t t l e ? I mean what have I got to lose? What have I got to look forward to? These things go through your mind you know. Thus, i n a d d i t i o n to the many worries a l r e a d y addressed, p a r t i c i p a n t s worried that they might l o s e c o n t r o l and take t h e i r own l i f e . In t a l k i n g about the impact of cancer pain on t h e i r w e l l - b e i n g , most p a r t i c i p a n t s reported that the emotional impact was the most s i g n i f i c a n t . Although p a r t i c i p a n t s i n c l u d e d many f e e l i n g s and moods i n t h e i r d e s c r i p t i o n s , i t was the f e e l i n g s of h e l p l e s s n e s s and l o s s of c o n t r o l that p r e c i p i t a t e d the most profound r e a c t i o n . In summary, p a r t i c i p a n t s d e s c r i b e d the impact of cancer pain on t h e i r p h y s i c a l , s o c i a l , and emotional w e l l - b e i n g . •Although the nature of the impact v a r i e d with the type of 6 5 p a i n e x p e r i e n c e d , i t was g e n e r a l l y h e l d t h a t t h e i m p a c t on t h e i r w e l l - b e i n g was p r o f o u n d . F u r t h e r m o r e , p a r t i c i p a n t s e x p l a i n e d the i m p a c t of c a n c e r p a i n on t h e i r w e l l - b e i n g i n the c o n t e x t of s p e c i f i c s t r a t e g i e s t h e y used to cope w i t h t h e i r s i t u a t i o n s . The f o l l o w i n g d i s c u s s i o n w i l l d e s c r i b e t h e s p e c i f i c s t r a t e g i e s employed to cope w i t h b o t h the c a n c e r p a i n and i t s i m p a c t on t h e i r l i v e s . C o p i n g W i t h C a n c e r P a i n and I t s Impact The t h i r d theme i n the a c c o u n t s was s t r a t e g i e s p a r t i c i p a n t s used to cope w i t h c a n c e r p a i n and i t s i m p a c t on t h e i r w e l l - b e i n g . Much of the e x p l a n a t i o n of the i m p a c t of c a n c e r p a i n on the p a r t i c i p a n t s ' l i v e s was e x p r e s s e d w i t h i n the c o n t e x t of d e s c r i b i n g s p e c i f i c s t r a t e g i e s t h e y had u t i l i z e d to c o p e . The f o l l o w i n g e x p l o r a t i o n of the p a t i e n t a c c o u n t s i l l u s t r a t e s b o t h the p u r p o s e and the n a t u r e of t h e s e s t r a t e g i e s . I n o r d e r to p r o v i d e a c o m p l e t e p i c t u r e , t h e s e s t r a t e g i e s have been g r o u p e d i n t o t h r e e b r o a d c a t e g o r i e s : making o t h e r s u n d e r s t a n d , managing t r e a t m e n t , and k e e p i n g c o n t r o l . T h i s c a t e g o r i z a t i o n of the s p e c i f i c s t r a t e g i e s i n r e l a t i o n to the p u r p o s e does not presume to i m p l y any s p e c i f i c o r d e r or m a g n i t u d e to t h e s e s t r a t e g i e s . R a t h e r , i t a t t e m p t s to l i n k t o g e t h e r r e l a t e d themes w i t h i n an i n t e g r a t e d whole i n o r d e r to f a c i l i t a t e p r e s e n t a t i o n o f t h e e x p l a n a t i o n s as t h e y were c o n s t r u c t e d i n the p a t i e n t s ' a c c o u n t s . 66 Making O t h e r s U n d e r s t a n d Most p a r t i c i p a n t s b e l i e v e d t h a t o t h e r s d i d n o t u n d e r s t a n d what i t i s l i k e to l i v e w i t h c a n c e r p a i n . Thus, a number of c o p i n g s t r a t e g i e s were c a r r i e d out f o r t h e p u r p o s e of making o t h e r s u n d e r s t a n d . Because p a i n i s su c h a s u b j e c t i v e e x p e r i e n c e , t h e p r o c e s s of making o t h e r s u n d e r s t a n d was l i m i t e d to t e l l i n g o t h e r s about the p a i n . P a r t i c i p a n t s used a v a r i e t y o f v e r y c r e a t i v e s t r a t e g i e s i n t r y i n g to make the r e s e a r c h e r u n d e r s t a n d what c a n c e r p a i n was l i k e f o r them. A common s t r a t e g y was to compare t h e i r p a i n to s o m e t h i n g t h a t the r e s e a r c h e r would u n d e r s t a n d . F o r example, a n a l o g i e s worked v e r y w e l l t o i l l u s t r a t e what the p a i n f e l t l i k e . P: Have you e v e r f a l l e n and h i t y o u r f u n n y bone? R: Uh... mmm... i t r e a l l y h u r t s . P: And you a r e j u s t i m m o b i l e f o r j u s t a few s e c o n d s . Have you e v e r done t h a t ? R: Y e s , I know what you mean. F o r a s p l i t s e c o n d you c a n ' t do a n y t h i n g , i t h u r t s so bad. P: T h a t ' s the f e e l i n g ! T h a t ' s i t ! T h a t ' s what i t f e e l s l i k e ! And i t ' s so s h a r p . P: I do n ' t know how to d e s c r i b e i t . I t ' s not as bad as g e t t i n g a k i c k i n the s h i n s . . . but i t ' s a n n o y i n g . . . i t ' s s o r e . . . i t b o t h e r s me a l o t . 67 To d i f f e r e n t i a t e between the two types of p a i n , p a r t i c i p a n t s s e l e c t e d words that would communicate what each s e n s a t i o n was l i k e f o r them. P: D u l l pain i s aching... sore... nagging. P: And i t ' s r e a l sharp... p e n e t r a t i n g . . . s t a b b i n g . Much of the d e s c r i p t i o n of cancer pain was about how bad the pain g e t s . P a r t i c i p a n t s commonly used f i g u r e s of speech such as s i m i l e s and metaphors to communicate the i n t e n s i t y of both d u l l and acute p a i n . P: L i k e there are rocks i n my stomach... l i k e a c l o s e d f i s t i s p r e s s i n g and t u r n i n g a g a i n s t the w a l l s of my stomach. P: L i k e a k n i f e stabbing you... l i k e a piece of g l a s s s l i c i n g through. P a r t i c i p a n t s employed a s i m i l a r s t r a t e g y to i l l u s t r a t e what sudden onset was l i k e . P: I t [the pain] j u s t grabs you... and you are l i k e a s t a t u e . P: And i t [the pain] j u s t runs up there l i k e l i g h t n i n g . In a d d i t i o n to i n t e n s i t y and onset, p a r t i c i p a n t s t r i e d to communicate the f e e l i n g i t s e l f . 68 P: Burning... i t c h i n g . . . s e a r i n g . . . hot. P: A very t i g h t , t i g h t f e e l i n g . . . p u l l i n g t a u t . . . l i k e a v i s e . P: Throbbing... t u r n i n g and p r e s s i n g . P a r t i c i p a n t s a l s o used s i m i l a r s t r a t e g i e s to d e s c r i b e t h e i r own t o l e r a n c e to the p a i n . P: Sometimes, when the pain h i t s , i t ' s r e a l l y p e n e t r a t i n g and I scream out. P: I t ' s not very comfortable, but on the other hand i t ' s not something that you could not stand. P: Everytime you move, the pain reminds you. But you can stand i t . Thus, p a r t i c i p a n t s t a l k e d about t h e i r own l e v e l of pain t o l e r a n c e as a way of making others understand how they made d e c i s i o n s i n r e l a t i o n to managing t h e i r p a i n . The importance of t h i s s t r a t e g y w i l l become more c l e a r when s t r a t e g i e s f o r managing treatment and keeping c o n t r o l are d i s c u s s e d . Another s t r a t e g y employed by some p a r t i c i p a n t s to make others understand about t h e i r pain was to e x p l a i n how i t i n t e r f e r e d with d a i l y a c t i v i t e s . P: I get so, I don't want to t a l k to nobody... I 69 don't want to hear anything... I j u s t l a y on the the c h e s t e r f i e l d and I j u s t go with the p a i n . P: I have a hard time walking... yes, I have a hard time going up the s t a i r s . I have a hard time g e t t i n g up from a c h a i r , s i t t i n g down, and g e t t i n g out of bed. P: You j u s t s i t and thin k and walk and t a l k and the pain i s always there. S e v e r a l p a r t i c i p a n t s t a l k e d about what i t was l i k e f o r them to experience cancer pain as a way of e x p l a i n i n g i t s impact on t h e i r w e l l - b e i n g . Most p a r t i c i p a n t s r e p o r t e d , however, that i t was d i f f i c u l t to f i n d people to t a l k to about t h e i r p a i n . Some p a r t i c i p a n t s a t t r i b u t e d the d i f f i c u l t y they experienced i n t a l k i n g about cancer pain to the p e r c e p t i o n that others d i d not want to hear about i t . P: I am sounding awful [ c r i e s f o r sometime; c l i e n t looks very h e l p l e s s and u t t e r l y beaten]. R: This [the extreme pain] i s very u p s e t t i n g f o r you to put up with. Some p a t i e n t s have s a i d that they need to t a l k about t h e i r pain but they don't get a chance to t a l k about i t . P: That's j u s t what I was going to say. Even i f i t i s u p s e t t i n g i t i s good to t a l k about i t . You need to t a l k about i t but who i s going to l i s t e n ? P: I know, I can j u s t f e e l when people do not want to t a l k about i t [the p a i n ] . It would be good f o r me i f I could t a l k about i t . But, most people do not want to t a l k about i t . 70 A l t h o u g h many p a r t i c i p a n t s s h a r e d t h e view t h a t o t h e r s d i d not want to h e a r about t h e i r p a i n , most r e c o g n i z e d the i m p o r t a n c e of t a l k i n g to o t h e r s about i t . The s t r a t e g y of t a l k i n g to o t h e r s about t h e i r p a i n was p e r c e i v e d as i m p o r t a n t n ot o n l y t o g e t t h e h e l p t h e y needed but a l s o to enhance t h e i r own f e e l i n g s of w e l l - b e i n g . I n a d d i t i o n to f e e l i n g t h a t o t h e r s d i d not want to h e a r about t h e i r p a i n , p a r t i c i p a n t s d e s c r i b e d s i t u a t i o n s i n w h i c h t h e y were not b e l i e v e d when t h e y t o l d o t h e r s a b o u t t h e i r p a i n . P: I h a t e [ e m p h a s i s ] i t when p e o p l e i n s u l t my i n t e l l i g e n c e ! When I say i t h u r t s and t h e y l o o k a t me as i f to say you a r e l o o k i n g good, you d o n ' t l o o k l i k e a n y t h i n g i s wrong w i t h y o u . Th a t r e a l l y bugs me! That i s l i k e you a r e l y i n g ! F o r some p a r t i c i p a n t s , the i n t e r p r e t a t i o n t h a t o t h e r d i d not b e l i e v e t h e i r p a i n r e p o r t was ba s e d on i n t e r a c t i o n s 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 ( H C P ) . R: How l o n g d i d t h i s go on, where you f e l t t h a t y o u r p a i n was not b e l i e v e d ? P: F e b r u a r y of 1981 u n t i l March of l a s t y e a r [ 1 9 8 7 ] . F o r t h a t much t i m e , I got no h e l p . The o n l y p e r s o n t h a t gave me any h e l p a t a l l was t h e d e n t i s t ! He n e v e r t u r n e d me away and he a l w a y s s a i d , " I am h e r e i f you need me." P: You went f o r s e v e r a l y e a r s t h i n k i n g t h a t o t h e r s d i d n ot b e l i e v e you were h u r t i n g ? P: I knew some of them [HCP] knew I was h u r t i n g . I guess t h e r e a s o n i t went on w i t h o u t anyone d o i n g a n y t h i n g i s t h e y d i d n ' t know how much I was h u r t i n g . F i n a l l y , t h e y s e n t me to the p a i n 71 c l i n i c and what a s u r p r i s e when they b e l i e v e d me [about the p a i n ] . Right away they b e l i e v e d me! I couldn't b e l i e v e that they b e l i e v e d me! For o t h e r s , t h i s i n t e r p r e t a t i o n was based on t h e i r past experience i n other s i t u a t i o n s . P: I never cease to amaze them [HCP] because I never complain. I f somebody says, "How are you?" and I could be i n j u s t t e r r i b l e pain and I would j u s t say, "Fine thank you." R: Why wouldn't you t e l l someone you were i n pain? P: Because I hate i t when you say to someone, "How are you?" and they get i n t o a long d i s s e r t a t i o n on t h e i r aches and p a i n s . And I know that people do have to get i t o f f t h e i r c h est. But I j u s t can't. So, a c t u a l l y they never know i f I am s i c k , or i n pain, or i n misery, or anything. P a r t i c i p a n t s a l s o d e s c r i b e d i n t e r a c t i o n s with h e a l t h care p r o f e s s i o n a l s where they f e l t they were not l i s t e n e d to when they t a l k e d about t h e i r p a i n . P: Sometimes you can say something over and over and they [HCP] might j u s t think i t ' s from something e l s e . They are not paying a t t e n t i o n to what you are saying over and over and they put i t down to something e l s e . P: I kind of wonder i f the the pain to t r y and get d i r e c t i o n . . . change the your r e a c t i o n i s l i k e . doctor would t a l k around you o f f i n another s u b j e c t . . . to see what P: Doctors should l i s t e n to the p a t i e n t when they are p r e s c r i b i n g the medication. I thi n k the doctor should share with the p a t i e n t what the pain i s l i k e f o r that day and not take i t f o r granted that i t i s the same today as yesterday. 72 And don't t e l l the p a t i e n t they are f i n e ! Most of the time the pain k i l l e r s p r e s c r i b e d are not enough. Thus, where p a r t i c i p a n t s expressed r e l u c t a n c e to t a l k to others about t h e i r p a i n , the p e r c e p t i o n that others d i d not want to hear about i t , d i d not b e l i e v e them, or d i d not l i s t e n to them accounted f o r t h i s response. Because p a r t i c i p a n t s recognized that t a l k i n g about t h e i r pain was important to t h e i r w e l l - b e i n g , they were c r i t i c a l of those they p e r c e i v e d would not l i s t e n . P: Every time I ask him [HCP] something, he says, "What do you want to know fo r ? Oh", he says, "so i t hurts a l i t t l e b i t , you have got to expect t h a t . You've got cancer." Can you imagine someone t a l k i n g to a p a t i e n t l i k e t h a t ! P a r t i c i p a n t s c r i t i c i z e d h e a l t h care p r o f e s s i o n a l s both f o r not l i s t e n i n g and a l s o f o r not knowing about cancer p a i n . P: He [HCP] s a i d that i t ' s not cancer because cancer doesn't s t a r t with p a i n . And l a t e r I found out that i t does f o r many people. The group l e a d e r at the support group asked how many f e l t p ain as the f i r s t s i g n of cancer. Seven out of the twenty p a t i e n t s there s a i d that pain was the f i r s t s i g n of cancer they had f e l t . P: You know they [HCP] say that cancer i s not supposed to be p a i n f u l . But I would l i k e one of them to have i t f o r one or two days j u s t so they would know what i t f e e l s l i k e . . . cancer i s p a i n f u l . 73 Many p a r t i c i p a n t s p e r c e i v e d that h e a l t h care p r o f e s s i o n a l s who d i d not l i s t e n to them were not competent. This p e r c e p t i o n f r e q u e n t l y i n t e r f e r e d with p a r t i c i p a n t s e s t a b l i s h i n g c a r i n g and t r u s t i n g r e l a t i o n s h i p s with h e a l t h care p r o f e s s i o n a l s . P: I get the f e e l i n g when I go to the pain c l i n i c that they t h i n k , "Oh you again." I guess others f e e l that way too. Seve r a l p a r t i c i p a n t s expressed the f e e l i n g that other people d i d n ' t understand how much the pain hurt and thought they were l o o k i n g f o r sympathy. P: Don't ask me how I am f e e l i n g i f you don't want to know the t r u t h . That r e a l l y hurts me. Because I wouldn't say that i f i t didn't hurt me. I would be the f i r s t one to say that I am gr e a t . P: The only t h i n g I can't get through to people i s that I don't want t h e i r sympathy. I don't expect them to f a l l a l l over me. P: Oh most people th i n k you are l o o k i n g f o r sympathy. And there are few people that r e a l l y f e e l s o r r y f o r you. Seve r a l p a r t i c i p a n t s i d e n t i f i e d s i t u a t i o n s that i n t e r f e r e d with them t a l k i n g to o t h e r s , p a r t i c u l a r l y h e a l t h care p r o f e s s i o n a l s , about t h e i r p a i n . Several p a r t i c i p a n t s commented that the presence of others who were i n pain 74 a f f e c t e d how they f e l t about, and subsequently how they r e p o r t e d , t h e i r own p a i n . P: When you see people [cancer p a t i e n t s ] and they are so much worse than you, then you f e e l l i k e a baby when you complain l i k e t h i s . At l e a s t t h i s i s how I f e e l . P: The other p a t i e n t s around you make the whole thin g worse. You see pain i n other persons. Again you can't do nothing, you must be th e r e . You have no c o n t r o l . R: I t ' s hard to see others s u f f e r i n g . P: Yes and seeing s u f f e r i n g i n c r e a s e s your w o r r i e s . For some, these f e e l i n g s of g u i l t made them r e l u c t a n t to t e l l others about t h e i r p a i n . S e v e r a l p a r t i c i p a n t s a l s o reported that hearing about t h e i r pain made some i n d i v i d u a l s f e e l very v u l n e r a b l e . P: Another t h i n g , I have to be very c a r e f u l who I t a l k to because some people get very scared. They don't want to share and they j u s t p u l l away. Some people cannot deal with cancer and some people cannot deal with p a i n . R: Do you t a l k about your pain to your family? P: Oh... uh... I thin k I do. My daughter doesn't l i k e to hear about i t . . . she gets scared that i t might happen to her. Although p a r t i c i p a n t s recognized the importance of t a l k i n g to others about t h e i r pain as a way of h e l p i n g them 75 understand what i t was l i k e to l i v e with cancer p a i n , t h i s sharing was u s u a l l y reserved f o r a few s e l e c t e d i n d i v i d u a l s . R: Does i t help you to t a l k to others about your pain? P: Yes... I think i t does. R: Do you do that very often? P: Well to my f r i e n d s . . . sometimes... j u s t a few. However, over time, many p a r t i c i p a n t s decided that i t was important to communicate to others about t h e i r p a i n , i n s p i t e of the o b s t a c l e s a l r e a d y mentioned. P: Okay... w e l l sometimes you got a f e e l i n g that i f you've got pain you should t r y and communicate that to other people. Then you th i n k , "Oh I am such a baby" and you f e e l bad about t h a t . But, I have learned with time to d e a l with p a i n . The pain i s r e a l . I t i s there and you should be able to communicate that to people around you so they can be more p a t i e n t with you and understanding. R: When you t a l k e d about pain before, you s a i d you f e l t g u i l t y about asking f o r help with your p a i n . P: Yes, i t i s a l l r e l a t e d . I should not t e l l others about my p a i n . I should not share with o t h e r s . I should not complain about p a i n , don't t r y to make others understand about the pain, don't t r y to communicate. But t h i s time I communicated to anyone who would l i s t e n . P: At f i r s t , I was completely ashamed of my p a i n . And then you th i n k , "Oh I am such a baby" and you f e e l bad about t h a t . I completely shut myself o f f . Compared to t h i s time where I t r y to get people to hear me, to get hel p . 76 P: I s t i l l h a v e n ' t got i t c l e a r i n my mind t h a t i t i s a c c e p t a b l e to c o m p l a i n ! I s p e n t so many y e a r s c o m p l a i n i n g and i t n e v e r d i d me any good so I j u s t gave up. I need to a c c e p t t h a t t h i s [ t h e p a i n ] i s a p a r t of my l i f e and when I c a n ' t h a n d l e t h i n g s t h e n I need to go f o r h e l p . I s t i l l h a v e n ' t l e a r n e d t h a t . Thus, p a r t i c i p a n t s used a v a r i e t y of s t r a t e g i e s f o r making o t h e r s u n d e r s t a n d what i t i s l i k e to l i v e w i t h c a n c e r p a i n . T a l k i n g to o t h e r s about t h e i r p a i n was t h e major s t r a t e g y p a r t i c i p a n t s used to e x p l a i n the i m p a c t o f c a n c e r p a i n on t h e i r w e l l - b e i n g . Where p a r t i c i p a n t s d e s c r i b e d s i t u a t i o n s i n w h i c h t h e y f e l t r e l u c t a n t to t a l k to o t h e r s a bout t h e i r p a i n , the p e r c e p t i o n t h a t o t h e r s d i d n o t want to h e a r about t h e i r p a i n or d i d not b e l i e v e t h e i r p a i n r e p o r t o f t e n a c c o u n t e d f o r t h i s . A l t h o u g h most p a r t i c i p a n t s f o u n d t h i s a p a r t i c u l a r l y d i f f i c u l t s t r a t e g y to employ, most worked t h r o u g h the d i f f i c u l t y b e c a u s e t h e y f e l t t h a t t a l k i n g to o t h e r s about t h e i r p a i n was n e c e s s a r y to g e t the h e l p t h e y n e e d e d . Toward t h i s end, most p a r t i c i p a n t s e v e n t u a l l y l e a r n e d to communicate t h e i r p a i n to o t h e r s on a r e g u l a r ba s i s . M a naging T r e a t m e n t Most of the p a r t i c i p a n t s i n t e r v i e w e d were g e n e r a l l y d i s s a t i s f i e d w i t h how t h e i r p a i n was managed by o t h e r s and w i t h the l i m i t a t i o n s of e x i s t i n g p a i n c o n t r o l s t r a t e g i e s . T hus, p a r t i c i p a n t s employed a mumber of s t r a t e g i e s f o r t h e p u r p o s e of managing t h e i r p a i n . The two major s t r a t e g i e s 77 employed were d i s t r a c t i o n and t a k i n g p a i n m e d i c a t i o n . D e c i s i o n s about w h i c h s t r a t e g y to employ and whether t o manage t h e m s e l v e s or seek h e l p from o t h e r s u l t i m a t e l y depended on the t y p e of p a i n t h e y e x p e r i e n c e d . P: At the s p e c i f i c moment t h a t you a r e i n t e r r i b l e p a i n , i t ' s j u s t p a i n , p a i n , and more p a i n . At t h a t moment you need s o m e t h i n g on the o u t s i d e to r e l i e v e t h a t p a i n . F o r m y s e l f , when I am i n s t r o n g p a i n , i t j u s t t a k e s c o n t r o l of me. I do n ' t have the s t r e n g t h to do a n y t h i n g f o r m y s e l f . I j u s t s i t t h e r e . . . and be i n v a d e d by the p a i n . R: What about the o t h e r t y p e of p a i n t h a t you e x p e r i e n c e d ? How was t h a t d i f f e r e n t f o r you? P: I f I am h a v i n g m i l d p a i n , i n t h a t c a s e t h e p a i n i s n ot c o n t r o l l i n g me. At t h e moment when t h e p a i n s t a r t s , I u s u a l l y d e c i d e to do s o m e t h i n g about i t . I might go f o r a walk, t a k e a p a i n k i l l e r , o r a n y t h i n g to c o n t r o l t h e p a i n . T h a t ' s the d i f f e r e n c e when the p a i n i s s e v e r e , i t c o n t r o l s you and you c a n n o t make a d e c i s i o n to do s o m e t h i n g about i t . Thus, d e c i s i o n s about who w i l l manage the t r e a t m e n t and what s t r a t e g i e s would be employed depended on t h e t y p e of p a i n . F o r most p a r t i c i p a n t s , s t r a t e g i e s w h i c h d i s t r a c t e d them from the p a i n were t r i e d f i r s t . These s t r a t e g i e s were h i g h l y i n d i v i d u a l i z e d and v a r i e d f r o m l i s t e n i n g to music to w a t c h i n g the b o a t s go by. P a r t i c i p a n t s commonly d i s t r a c t e d t h e m s e l v e s from t h e i r p a i n by k e e p i n g busy, e i t h e r m e n t a l l y or p h y s i c a l l y . Most p a r t i c i p a n t s had employed p h y s i c a l a c t i v i t y as a d i s t r a c t i o n s t r a t e g y . P: The o t h e r t h i n g i s t h a t I c a n ' t s i t . I j u s t have to g e t up and move a r o u n d when I have p a i n . 78 R : A n d when y o u move a r o u n d d o e s t h a t e a s e t h e p a i n i n y o u r l e g ? P : Y e s m o v i n g h e l p s a l o t . When I w a l k t h a t k i n d o f h e l p s . R : I s t h e r e a n y t h i n g e l s e t h a t y o u do t h a t h e l p s t o r e l i e v e t h e p a i n ? P : A s I s a y , i f I w o u l d j u s t s i t s t i l l I c o u l d n ' t s t a n d i t . i n some c a s e s , a c t i v i t i e s w h i c h i n v o l v e d h i g h l e v e l s o f b o t h m e n t a l a n d p h y s i c a l a t t e n t i o n w e r e n e e d e d t o d i s t r a c t p a r t i c i p a n t s f r o m t h e i r p a i n . P : S o m e t h i n g a c t i v e l i k e r a k i n g t h e l e a v e s . I f I t r y t o w a t c h T . V . o r r e a d a b o o k t h e n t h a t d o e s n o t w o r k . When I do s o m e t h i n g t h a t my b r a i n a n d b o d y a r e e n g a g e d i n f o r a t i m e , t h e n I am d i s t r a c t e d f r o m t h e p a i n . Some p a r t i c i p a n t s r e p o r t e d t h a t t h a t d i s t r a c t i o n t e c h n i q u e s d i d more t h a n t a k e t h e i r m i n d s o f f t h e p a i n . F o r s o m e , i t i m p r o v e d t h e i r m o o d . P : On a d a y w h e r e I w o u l d s i t a l l d a y r a t h e r t h a n s t a n d o r w a l k a b o u t t h e n t h a t d a y w o u l d be w o r s e t h a n i f I h a d b e e n more a c t i v e . R : The p a i n w o u l d be w o r s e ? P : The d a y w o u l d be w o r s e i n e v e r y w a y . I w o u l d f i n d t h e p a i n h a r d e r t o p u t up w i t h . T h u s , t h e d i s t r a c t i o n a c t i v i t i e s i m p r o v e d p a r t i c i p a n t s ' a b i l i t y t o c o p e , n o t o n l y w i t h t h e p a i n , b u t w i t h t h e i r d a y . I n a d d i t i o n , t h e s e a c t i v i t i e s p r o v i d e d a s e n s e o f a c c o m p l i s h m e n t . 79 P: And i f t h e p a i n g e t s bad i n t h e e v e n i n g , I can say t h a t a t l e a s t I have done s o m e t h i n g t o d a y . I h a v e n ' t e x a c t l y g i v e n i n a l t o g e t h e r . Then I f e e l good. But i f the p a i n comes e a r l i e r and I g i v e i n to my f e e l i n g and d o n ' t go o u t , t h e n I won't f e e l good. I ' l l s a y , " W e l l s e e , t h e r e i s a day gone to have w i t h y o u r s e l f . " A l t h o u g h p a r t i c i p a n t s a c k n o w l e d g e d the need f o r a s t r a t e g y to t a k e t h e i r minds o f f t h e i r p a i n , many f o u n d i t v e r y d i f f i c u l t to m a i n t a i n t h e s e a c t i v i t i e s due to t h e i r g e n e r a l c o n d i t i o n . P: One t h i n g t h a t h e l p s i s i f I j u s t g e t up and w a lk. As a m a t t e r of f a c t my c o n d i t i o n i s much b e t t e r i f I w a lk. I d i s c i p l i n e m y s e l f to walk not b e c a u s e I f e e l l i k e i t . U s u a l l y , I f e e l r o t t e n i n t h e m o r n i n g and the n a usea i s e x t r e m e . Ye t you j u s t c a n ' t l e t y o u r s e l f go. You have to d i s c i p l i n e y o u r s e l f ! F o r some, the i n t e n s i t y o f t h e p a i n made c o n c e n t r a t i o n , and t h e r e f o r e d i s t r a c t i o n , a l m o s t i m p o s s i b l e . P: W e l l , you see t h e r e a r e c e r t a i n t h i n g s you have to to do w i t h p a i n . You have to put y o u r mind on s o m e t h i n g e l s e , b e c a u s e i f you s i t and t h i n k about i t , t h e n you g e t i n t o i t and i t i s l i k e you a r e c r a w l i n g i n s i d e the p a i n . B u t , what I am t r y i n g to do i s to s t a y on the o u t s i d e . R: Say more... about s t a y i n g on the o u t s i d e . P: When i t [ t h e p a i n ] g e t s r e a l bad, t h e n I c a n ' t h a n d l e i t . Then i t consumes me. But I t r y to do s o m e t h i n g to t a k e my mind o f f o f i t . . . keep my eyes on the t e l e v i s i o n , f o c u s on a s h i p t h a t has come i n , or g e t up and go o u t . C e r t a i n s i t u a t i o n s , s u c h as b e i n g i n h o s p i t a l , made p e r f o r m a n c e of d i s t r a c t i o n s t r a t e g i e s a l m o s t i m p o s s i b l e . 80 P: You a r e v e r y l i m i t e d i n t h e h o s p i t a l to h e l p y o u r s e l f i n c o n t r o l l i n g y o u r own p a i n . I t d o e s n ' t g i v e the p a t i e n t the o p p o r t u n i t y to c o n t r o l h i s own p a i n . T h e r e i s n o t h i n g to t a k e y o u r mind o f f the p a i n . T h e r e i s v e r y l i t t l e you can do e x c e p t to t a k e p a i n m e d i c a t i o n . Thus, a l t h o u g h a l l p a r t i c i p a n t s r e c o g n i z e d the v a l u e of d i s t r a c t i o n t e c h n i q u e s , t h e p a r t i c i p a n t s ' c o n d i t i o n and s i t u a t i o n o f t e n i n t e r f e r e d w i t h t h e s e s t r a t e g i e s b e i n g c a r r i e d o u t . A n o t h e r d i s t r a c t i o n s t r a t e g y , employed by s e v e r a l p a r t i c i p a n t s w i t h v a r i a b l e r e s u l t s , was t r a n s c u t a n e o u s e l e c t r i c a l n e r v e s t i m u l a t i o n (TENS) c a r e . One p a r t i c i p a n t d i f f e r e n t i a t e d between the e f f e c t i v e n e s s of t h i s s t r a t e g y f o r d u l l and a c u t e p a i n . P: P h y s i o t h e r a p y t r i e d me on the TENS c a r e m a c h i n e . I f o u n d t h a t was good. I put the TENS c a r e on i n the e v e n i n g and I f i n d t h a t i t r e l a x e s me. I f i n d i t t o n e s down t h e p a i n . I t d o e s n ' t g e t r i d of i t , but i t t o n e s i t down. I may have to s i t t h e r e f o r an hour w i t h i t on, but i t t o n e s i t down enough t h a t I d o n ' t have to t a k e my P e r c o c e t [ p a i n m e d i c a t i o n ] . . . but when I g e t the r e a l heavy p a i n s , t h e n i t d o e s n ' t do a t h i n g . W h i l e the s t r a t e g i e s i d e n t i f i e d as d i s t r a c t i o n s were v a r i e d , p a r t i c i p a n t s c o n s i s t e n t l y e v a l u a t e d t h e e f f e c t i v e n e s s and l i m i t a t i o n s o f d i s t r a c t i o n s t r a t e g i e s u s i n g common c r i t e r i a . A l l t h e d i s t r a c t i o n s t r a t e g i e s m e n t i o n e d were e f f e c t i v e o n l y f o r p a i n o f m i l d to moderate i n t e n s i t y . The use of d i s t r a c t i o n as a s t r a t e g y r e q u i r e d t h a t p a r t i c i p a n t s c o u l d c o n c e n t r a t e s u f f i c i e n t l y to d i s t r a c t t h e m s e l v e s . 81 P a r t i c i p a n t s f o u n d t h i s d i f f i c u l t , i f not i m p o s s i b l e , when e x p e r i e n c i n g s e v e r e p a i n . D e s p i t e t h e l i m i t a t i o n s of d i s t r a c t i o n s t r a t e g i e s , p a r t i c i p a n t s f o u n d t h e s e t e c h n i q u e s i n c r e a s e d t h e i r f e e l i n g s o f w e l l - b e i n g and of b e i n g i n c o n t r o l . To t h i s end, many p a r t i c i p a n t s employed them r e g u l a r l y . A s e c o n d c o p i n g s t r a t e g y used by p a r t i c i p a n t s i n managing t h e i r p a i n was t a k i n g m e d i c a t i o n . A number of i s s u e s i n f l u e n c e d a p a r t i c i p a n t ' s d e c i s i o n as to whether or not to t a k e th e m e d i c a t i o n as d i r e c t e d by h e a l t h c a r e p r o f e s s i o n a l s . F u r t h e r m o r e , most p a r t i c i p a n t s p e r c e i v e d t h e i r p a i n m e d i c a t i o n to be of l i m i t e d use i n c o n t r o l l i n g the c a n c e r p a i n . I would say t h a t I am d i s a p p o i n t e d t h a t more c a n n o t be done f o r c a n c e r p a i n . B e f o r e I g o t i l l , I had the n o t i o n t h a t i f e v e r I g e t c a n c e r t h a t p a i n c o n t r o l i s no p r o b l e m . E v e r y b o d y s a y s t h a t . . . w e l l w i t h a l l the modern d r u g s . . . p a i n i s under c o n t r o l . But, t h a t i s not so! And t h a t comes as a s h o c k . I t came to me as a s h o c k ! F o r some, i t was the d e g r e e o f p a i n r e l i e f t h a t was u n s a t i s f a c t o r y . P: I guess my p a i n i s not e f f e c t i v e l y c o n t r o l l e d . I t i s not c o n t r o l l e d to my s a t i s f a c t i o n , but i t i s c o n t r o l l e d to a p o i n t . I t i s c o n t r o l l e d to t h e p o i n t where I can s t a n d i t . 82 P: I have the constant pain and the constant pain gets a l i t t l e worse at times. But s i n c e I've been on the medication, I don't double up anymore l i k e I used to and I don't l a s h out at my wife anymore l i k e I used t o . P: The pain was r e a l l y bad up u n t i l I s t a r t e d at the pain c l i n i c . Then I s t a r t e d g e t t i n g things [medication] that d i d h e l p . . . some. For o t h e r s , the d u r a t i o n of pain r e l i e f was inadequate. R: When you are taking the pain medication, how much pain r e l i e f do you get? Does i t l a s t from the time you take one medication to the next? P: No, no, no. R: Can you t e l l me how long i t does l a s t you? P: Well, I would say about an hour and a h a l f . Yah... t h a t ' s a l l I get out of i t . For many, pain r e l i e f they had obtained from medication was i n s u f f i c i e n t . Thus, where pain medication was used as a s t r a t e g y to c o n t r o l p a i n , the degree and d u r a t i o n of pain r e l i e f was inadequate and l e d to d i s s a t i s f a c t i o n . Not one of the p a r t i c i p a n t s reported e x p e r i e n c i n g complete pain r e l i e f with the use of pain medication. However, f o r most of the p a r t i c i p a n t s , pain could be c o n t r o l l e d to a manageable l e v e l . P: W e l l . . . I would say... sometimes I don't f e e l a nything. Sometimes I am aware that I have problems, but i t i s manageable. And sometimes i t [the pain] i s not very w e l l managed. When that happens and the pain gets to the point where I 83 c a n ' t t a k e i t . . . I have the l i q u i d m o r p h i n e . I f I do t h a t . . . t h e n f i n a l l y . . . i t makes the p a i n manageable a g a i n . Thus f o r many p a r t i c i p a n t s , t h e g o a l of t a k i n g m e d i c a t i o n was t o keep the p a i n a t a l e v e l t h a t c o u l d be managed. A l t h o u g h most p a r t i c i p a n t s a c k n o w l e d g e d t h a t p a i n m e d i c a t i o n d i d h e l p to a l i m i t e d d e g r e e , a few p a t i e n t s d e s c r i b e d p a i n t h a t was u n a f f e c t e d by m e d i c a t i o n . P: When the p a i n i s r e a l l y bad the m e d i c a t i o n d o e s n ' t even t o u c h i t . I s t o p p e d t a k i n g them b e c a u s e i t wasn't d o i n g a t h i n g . B e s i d e s the i s s u e of how e f f e c t i v e p a i n m e d i c a t i o n was p e r c e i v e d to be, s e v e r a l o t h e r i s s u e s i n f l u e n c e d i n d i v i d u a l p a r t i c i p a n t d e c i s i o n - m a k i n g i n r e l a t i o n to t a k i n g p a i n m e d i c a t i o n . A l t h o u g h p a r t i c i p a n t s a c k n o w l e d g e d t h a t p a i n m e d i c a t i o n was more e f f e c t i v e i f t a k e n r e g u l a r l y , c o n c e r n s about n a r c o t i c a d d i c t i o n and s i d e e f f e c t s o f t h e m e d i c a t i o n were of g r e a t c o n c e r n to them. S e v e r a l p a r t i c i p a n t s e x p r e s s e d f e a r s r e l a t e d to n a r c o t i c s and a d d i c t i o n . P: You know I have a l w a y s got t h i s i d e a i n the back of my mind t h a t I w i l l become a d r u g a d d i c t . But e v e r y b o d y I t a l k to s a y s no, t h a t i f you need the d r u g you w i l l not become a d d i c t e d . I know I am d e p endent on i t . I f I f o r g e t to t a k e the m o r p h i n e f o r a bout f i v e or s i x h o u r s t h e n I r e a l l y g e t i n t o t r o u b l e . I g e t the s h a k e s . I b r e a k i n t o a sweat and so on. That i s s o m e t h i n g I n e v e r t h o u g h t would happen. 84 Another i s s u e that i n f l u e n c e d p a r t i c i p a n t decision-making i n ta k i n g pain medication was concern about side e f f e c t s of the medication. Loss of c o n t r o l , p a r t i c u l a r l y over thought processes, was a major concern expressed and the most common reason f o r not ta k i n g medication as ordered. P: So what happens at the same time i s that you get drowsy, you know the p i l l i t s e l f . . . you are not l i k e a normal human being anymore. You are drugged out... spaced out... I p e r s o n a l l y l i k e to have c o n t r o l over a l l the s i t u a t i o n s . A second concern expressed by many p a r t i c i p a n t s t a k i n g pain medication was t h e i r experience with nightmares. P: I get nightmares from the morphine at l e a s t three times a n i g h t . I t would happen s e v e r a l n i g h t s i n a row that I would wake up screaming from the nightmares. R: Have you had nightmares a l l along with the morphine ? P: Yes and some of them are t e r r i b l e . Not so t e r r i b l e when I wake up and analyze them, but t e r r i b l e when I am e x p e r i e n c i n g them. Sometimes when I wake up and say, "What i s there to get e x c i t e d about?" When I wake up I say, "Well i t wasn't that bad." But while I dreamt i t , I was very, very uncomfortable. For some p a r t i c i p a n t s , the frequency and nature of the nightmares decreased as they adapted to the medication. For ot h e r s , nightmares continued to be a problem. A t h i r d major sid e e f f e c t i d e n t i f e d was severe c o n s t i p a t i o n . Although p a r t i c i p a n t s u t i l i z e d many 85 s t r a t e g i e s to prevent t h i s s i d e e f f e c t , c o n s t i p a t i o n remained a s i g n i f i c a n t problem. P: A t e r r i b l e side e f f e c t of morphine i s the c o n s t i p a t i o n . Since I am using morphine I cannot go to the washroom. Every night my wife has to give me an enema. R: You cannot move your bowels unless you have an enema every night? P: Yes, i n f a c t i t has happened that I cannot go to the washroom i n s p i t e of the enema. The s t o o l becomes very, very hard. The pain from the c o n s t i p a t i o n i s worse than anything caused by cancer. Thus, the d e c i s i o n to take pain medication on a r e g u l a r b a s i s was a very d i f f i c u l t one. Many p a r t i c i p a n t s p r e f e r r e d not to take medication i f the pain could be c o n t r o l l e d s u f f i c i e n t l y by other means. However, when faced with severe pain and the p o s s i b i l i t y of l o s s of c o n t r o l over the management of t h e i r p a i n , p a r t i c i p a n t s d i d u t i l i z e m e dication. Although most p a r t i c i p a n t s acknowledged that medication was the best a v a i l a b l e s t r a t e g y f o r pain c o n t r o l , i t was g e n e r a l l y held that medication was very l i m i t e d i n p r o v i d i n g c o n s i s t e n t and e f f e c t i v e pain r e l i e f . Where medication was u t i l i z e d , the goal was to keep the pain at a manageable l e v e l , r a t h e r than suppress i t . P a r t i c i p a n t s were r e l u c t a n t to take the amount of medication p r e s c r i b e d to suppress the p a i n , because of concerns about side e f f e c t s and about the p o t e n t i a l f o r a d d i c t i o n . To t h i s end, p a r t i c i p a n t s were c o n s t a n t l y r e - e v a l u a t i n g t h e i r 8 6 s i t u a t i o n and making d e c i s i o n s about t a k i n g or not t a k i n g m e d i c a t i o n s . Thus, when f a c e d w i t h the dilemma of c h o o s i n g between the e f f e c t s of p a i n and t h e e f f e c t s o f the p a i n m e d i c a t i o n , most p a r t i c i p a n t s e l e c t e d to e x p e r i e n c e a c e r t a i n amount of p a i n . K e e p i n g C o n t r o l I n c o p i n g w i t h c a n c e r p a i n and i t s i m p a c t , p a r t i c i p a n t s employed s e v e r a l s t r a t e g i e s f o r t h e p u r p o s e o f k e e p i n g c o n t r o l . F o r most p a r t i c i p a n t s , s t r a t e g i e s f o r k e e p i n g c o n t r o l were l e a r n e d by t r i a l and e r r o r . T h i s means, i n e f f e c t , t h a t p a r t i c i p a n t s l e a r n e d s t r a t e g i e s f o r k e e p i n g c o n t r o l by l o s i n g i t . As an outcome of t h e s e e x p e r i e n c e s , p a r t i c i p a n t s l e a r n e d to make d e c i s i o n s f o r t h e p u r p o s e of k e e p i n g c o n t r o l . P a r t i c i p a n t s t a l k e d about t h e s e d e c i s i o n s i n r e l a t i o n to c h o i c e s t h e y had made about c o n s e r v i n g e n e r g y , t a k i n g m e d i c a t i o n , s e e k i n g h e l p , and r e s i s t i n g h o s p i t a l i z a t i o n . F o r most p a r t i c i p a n t s , l o s s of c o n t r o l was synonymous w i t h a c u t e e p i s o d e s of i n t e n s e p a i n . T h e r e f o r e , p a r t i c i p a n t s employed s t r a t e g i e s to r e d u c e the p a i n and m i n i m i z e the i m p a c t of the p a i n f o r the p u r p o s e o f k e e p i n g c o n t r o l . P: I t r y to e l i m i n a t e e v e r y t h i n g I c a n , b e c a u s e I am t r y i n g to t h i n k of ways to l e s s e n the p a i n . . . l i k e sudden movement. I am t r y i n g to l e s s e n the a g g r a v a t i o n and a t the same time not l o s e my i n d e p e n d e n c e . What I want i s to be m o b i l e , to be i n c o n t r o l , and to be proud of myself. In order to keep c o n t r o l , p a r t i c i p a n t s needed energy to manage both the pain and i t s impact. To t h i s end, p a r t i c i p a n t s developed s t r a t e g i e s to conserve p h y s i c a l and emotional energy i n any way they c o u l d . Although many p a r t i c i p a n t s d e s c r i b e d p h y s i c a l a c t i v i t y as a way of d i s t r a c t i n g themselves from mild to moderate p a i n , they o f t e n coped with severe pain by becoming p h y s i c a l l y i n a c t i v e . P: And I f i n d i f I push myself, I not only get t i r e d , but the pain gets worse. P: When I keep moving, the pain i s always there; always there . P: Each time you move, i t i s p a i n f u l . Over time, p a r t i c i p a n t s learned that p h y s i c a l a c t i v i t y exacerbated both the severe pain and the f a t i g u e that accompanied i t . In order to minimize the pain and i t s impact, they t h e r e f o r e r e s t r i c t e d movement as much as p o s s i b l e . P a r t i c i p a n t s a l s o d e s c r i b e d withdrawing e m o t i o n a l l y when they experienced severe pain as a means of keeping c o n t r o l . 88 P: I f I am i n pain , I withdraw so they won't see me. P: When the pain i s r e a l l y bad, I f e e l I would l i k e to go i n t o my room and s u f f e r myself. P: At the moment I was having severe p a i n , I j u s t shut up and go i n s i d e . I give as l i t t l e of myself as p o s s i b l e . P: When I am i n pain , I can't see anyone or go out. P a r t i c i p a n t s i s o l a t e d themselves from others to reduce the d r a i n on t h e i r emotional energy. Although withdrawal p r o t e c t e d others from seeing t h e i r p a i n , i t a l s o provided a b u f f e r f o r the p a r t i c i p a n t . That i s , p a r t i c i p a n t s avoided seeing others s u f f e r because of t h e i r p a i n . In a d d i t i o n , many p a r t i c i p a n t s found communicating with others almost impossible when they were e x p e r i e n c i n g severe p a i n . Thus, withdrawing enabled p a r t i c i p a n t s to avoid p o t e n t i a l l y u p s e t t i n g s i t u a t i o n s and to conserve t h e i r a v a i l a b l e energy to cope with the p a i n . A second s t r a t e g y p a r t i c i p a n t s u t i l i z e d f o r keeping c o n t r o l was developing c r i t e r i a to guide t h e i r decision-making i n r e l a t i o n to taking medication. P: I j u s t take i t now when I r e a l l y have t o . I f I can go two days without t a k i n g i t , then I do. 8 9 P: The d o c t o r l e t s me make up my own mind when I need i t . B e cause when I was t a k i n g i t , I was dopey a l l the t i m e . I wasn't m o b i l e . I was l a g g y . R: Do you t a k e y o u r m e d i c a t i o n s on a r e g u l a r b a s i s ? P: No, 1 t a k e i t on an a s - n e e d e d b a s i s . Some say t h a t i s the wrong way to do i t , t h a t you s h o u l d r e a l l y t a k e i t on an e v e r y f o u r o r s i x hour b a s i s and t h e n i t works b e t t e r t h a t way. I d o n ' t know, I am j u s t f e d up t a k i n g p i l l s , e s p e c i a l l y when i t ' s a n a r c o t i c t y p e of p i l l t h e n I t h i n k w e l l i f I can g e t by w i t h t h i s much, t h e n why t a k e more? As a l r e a d y m e n t i o n e d , i s s u e s s u c h as c o n c e r n about n a r c o t i c a d d i c t i o n and s i d e e f f e c t s of m e d i c a t i o n i n f l u e n c e d p a r t i c i p a n t s ' d e c i s i o n s i n r e l a t i o n t o t a k i n g p a i n m e d i c a t i o n . Thus, most p a r t i c i p a n t s e l e c t e d to t a k e m e d i c a t i o n o n l y when the p a i n was beyond t h e i r t o l e r a n c e l e v e l . T h i s s t r a t e g y e f f e c t i v e l y p r o t e c t e d them from the l o s s of c o n t r o l r e l a t e d to i n t o l e r a b l e p a i n or the s i d e e f f e c t s of m e d i c a t i o n . F u r t h e r m o r e , many p a r t i c i p a n t s p e r c e i v e d t h a t by e m p l o y i n g s t a t e g i e s o t h e r t h a n m e d i c a t i o n , t h e y c o u l d p o s s i b l y r e d u c e the p a i n even f u r t h e r w i t h o u t the same r i s k s . P: Today, I am i n c o n t r o l o f my p a i n . When the p a i n i s bad, I t a k e the medi c a t i o n . When i t i s -not, I c o n t r o l i t by t h e o t h e r means we t a l k e d a b o u t . P: I would s a y , t r y and keep c o n t r o l o f y o u r own p a i n i n any way you c a n . Get a good p a i n k i l l e r . T r y to work on y o u r mind. D i s t r a c t y o u r s e l f from th e p a i n . Have f r i e n d s come o v e r . Have a hobby and make some k i n d o f an e f f o r t to work t h r o u g h th e 90 p a i n . You have to make an e f f o r t not to j u s t s i t t h e r e and f e e l t h e p a i n . The p a i n i s s t i l l t h e r e , but you have put y o u r mind on s o m e t h i n g e l s e . You a r e i n c o n t r o l . F o r me, t h a t ' s what i t i s t o keep c o n t r o l . Thus, d e c i s i o n s about t a k i n g p a i n m e d i c a t i o n r e f l e c t e d c o n c e r n s about l o s s of c o n t r o l r a t h e r t h a n the l e v e l of p a i n t h e y were e x p e r i e n c i n g . When p a r t i c i p a n t s d e c i d e d t o t a k e the m e d i c a t i o n , f e a r of l o s i n g c o n t r o l from i n t o l e r a b l e p a i n o f t e n e x p l a i n e d t h a t d e c i s i o n . A t h i r d s t r a t e g y p a r t i c i p a n t s u t i l i z e d i n k e e p i n g c o n t r o l was g e t t i n g h e l p when n e e d e d . W i t h s e v e r e p a i n , most p a r t i c i p a n t s r e c o g n i z e d t h a t o u t s i d e h e l p was e s s e n t i a l to k e e p i n g c o n t r o l . To t h a t end, p a r t i c i p a n t s s o u g h t h e l p from o t h e r s when the p a i n was too s e v e r e f o r them t o manage. P: You need s o m e t h i n g or someone on the o u t s i d e to h e l p you w i t h v e r y s t r o n g p a i n . You can do n o t h i n g f o r y o u r s e l f . R: How l o n g b e f o r e you w i l l r e t u r n t o the c l i n i c i f t h i s s i t u a t i o n [ i n t e n s e p a i n ] does not i m p r o v e ? P: I ' l l go i n T u e sday t o the c l i n i c . O t h e r w i s e , I ' l l end up i n t o t a l d e s p a i r and l o s e c o n t r o l c o m p l e t e l y . . . maybe even have to go to t h e h o s p i t a l . You know I am t a l k i n g to the p a i n l i k e i t has become p a r t o f me. I b a r t e r , I say to t h e p a i n , "Take i t e a s y , d o n ' t h u r t me too much." That i s how I t e l l m y s e l f , I am i n c o n t r o l . A l t h o u g h p a r t i c i p a n t s were q u i c k to r e c o g n i z e when t h e y would need o u t s i d e h e l p i n managing t h e i r s i t u a t i o n s , h o s p i t a l i z a t i o n was not an o p t i o n most p a r t i c i p a n t s p u r s u e d 91 or even found a c c e p t a b l e . Because p a r t i c i p a n t s p e r c e i v e d they could not manage t h e i r pain i n h o s p i t a l , they r e s i s t e d or r efused h o s p i t a l i z a t i o n i n favour of keeping c o n t r o l . Many p a r t i c i p a n t s p e r c e i v e d that when they were admitted to h o s p i t a l , they would give up t h e i r c o n t r o l . P: I t ' s l i k e when you go i n t o the h o s p i t a l . The moment you walk i n then you have no more c o n t r o l . You j u s t stop c o n t r o l l i n g . . . i t i s a b i g t r a n s i t i o n . They j u s t take you by the hand and you j u s t f o l l o w . And f o r me that i s something that I don't want... something that I have to accept. I have to put my mind to i t . One of the major concerns i n r e l a t i o n to keeping c o n t r o l i n h o s p i t a l was not being able to get the medication when i t was needed . P: The problem with pain c o n t r o l i n the h o s p i t a l i s that the q u a n t i t y of pain k i l l e r i s not enough to c o n t r o l the pain and you always have the lapse of time when you have to deal with the p a i n . I t takes the medication about f o r t y - f i v e minutes to work and you wait one whole hour i n pain before g e t t i n g i t , so about two hours out of four or f i v e you are i n p a i n . And f o r no reason that I can see. That should not e x i s t , but i t does. R: So a great deal of the time you are i n p a i n . P: Yes, you don't have to look at the c l o c k . You know e x a c t l y the time by the way you f e e l . And then, I have to wait another hour, I have to wait another f o r t y - f i v e minutes and so on... u n t i l I can c a l l the nurse. Then I w i l l have to watch the c l o c k hoping the nurse w i l l be on time, something they are not always doing because they are busy. You are not the only one. I f they do not come i n ten minutes ( a f t e r the medication i s due) then you c a l l them. They say, "Ohhh... I f o r g o t . " And then sometimes you s t i l l w ait... sometimes you wait two hours i n p a i n . Another 92 p a t i e n t has t o l d me o f w a i t i n g as l o n g as f o u r and o n e - h a l f h o u r s a f t e r he had f i r s t t o l d t h e n u r s e s about h i s p a i n . P: Most of the time the m e d i c a t i o n s a r e p r e s c r i b e d e v e r y f o u r h o u r s [ i n h o s p i t a l ] . A l m o s t any p a i n k i l l e r o n l y works f o r t h r e e h o u r s . I t i s v e r y u n u s u a l t h a t t h e y l a s t f o r f o u r h o u r s . So you alwa y s end up w i t h a l a p s e o f time and t h i s [ g r e a t e m p h a s i s ] s h o u l d n ot happen! T h a t ' s the d i f f e r e n c e when you a r e a t home. U s u a l l y , when you a r e a t home, t h e n you t a k e the m e d i c a t i o n s when you need them, and you have l e s s p a i n . A l l p a r t i c i p a n t s p e r c e i v e d t h e y c o u l d manage t h e i r p a i n b e t t e r a t home. B e s i d e s n o t h a v i n g a c c e s s to the p a i n m e d i c a t i o n when t h e y needed i t , p a r t i c i p a n t s a l s o t a l k e d about how d i f f i c u l t i t was to employ s t r a t e g i e s o t h e r t h a n t a k i n g m e d i c a t i o n i n the h o s p i t a l s e t t i n g . P: I t [ b e i n g i n h o s p i t a l ] d o e s n ' t g i v e t h e p a t i e n t the o p p o r t u n i t y to c o n t r o l h i s own p a i n . You a r e v e r y l i m i t e d i n t h e h o s p i t a l to h e l p y o u r s e l f i n c o n t r o l l i n g y o u r own p a i n . T h e r e i s v e r y l i t t l e to t a k e y o u r mind o f f the p a i n . T h e r e i s v e r y l i t t l e you can do e x c e p t to t a k e p a i n k i l l e r s and m e d i c a t i o n . P: T h a t ' s why I d o n ' t want to go to h o s p i t a l . I w i l l be s t u c k s i t t i n g i n a c h a i r w i t h my p a i n . I f I am a t home I can g e t up when I want t o , I can go and l o o k out the window, I can t a k e a b a t h when I want, I can d i v e r t my mind from t h e p a i n . A c c o r d i n g t o the p a r t i c i p a n t s i n t e r v i e w e d , t h e r e was l i t t l e o p p o r t u n i t y to c o l l a b o r a t e 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 n h o s p i t a l a bout the management o f t h e i r 93. treatment. P a r t i c i p a n t s p e r c e i v e d that d e c i s i o n s about pain management were made without c o n s i d e r a t i o n of how they had managed i n the past. For p a r t i c i p a n t s who had developed c o n s i d e r a b l e e x p e r t i s e over the years, the l a c k of op p o r t u n i t y to even d i s c u s s t h e i r s t r a t e g i e s was d e v a s t a t i n g . R esistance to h o s p i t a l i z a t i o n was t h e r e f o r e e x p l a i n e d by p a r t i c i p a n t s ' p e r c e p t i o n s that pain medication was not a c c e s s i b l e when needed, and nonpharmacological s t r a t e g i e s were d i f f i c u l t to c a r r y out i n the h o s p i t a l . In t h i s way, r e s i s t i n g h o s p i t a l i z a t i o n helped p a r t i c i p a n t s r e t a i n c o n t r o l of t h e i r l i v e s . Summary This chapter has presented the p a t i e n t ' s experience of l i v i n g with cancer pain according to the accounts of the p a r t i c i p a n t s i n t h i s study. P a r t i c i p a n t s d e s c r i b e d the impact of cancer pain on t h e i r l i v e s as profound. Although the nature of the impact v a r i e d with the type of pain the p a r t i c i p a n t experienced, i t was g e n e r a l l y held that cancer pain had a major impact on the p h y s i c a l , s o c i a l , and emotional w e l l - b e i n g of those who experienced i t . P h y s i c a l l y , the pain caused f a t i g u e and i n h i b i t e d m o b i l i t y . S o c i a l l y , p a r t i c i p a n t s experienced c o n f l i c t with r o l e e x p e c t a t i o n s and performance. R e l a t i o n s h i p s with f a m i l y , c o l l e a g u e s , and h e a l t h care 94 p r o f e s s i o n a l s were a f f e c t e d . E m o t i o n a l l y , p a r t i c i p a n t s experienced a multitude of f e e l i n g s i n r e l a t i o n to pa i n , i n coping with p a i n , and i n coping with i t s impact. In s p i t e of the profound impact experienced with cancer pai n , most p a r t i c i p a n t s developed coping s t r a t e g i e s f o r d e a l i n g with not only cancer p a i n , but a l s o with the impact of cancer pain on t h e i r w e l l - b e i n g . Thus, p a r t i c i p a n t s e x plained the experience of cancer pain i n the context of the s t r a t e g i e s they had used to cope with pain and i t s impact. The m o t i v a t i o n to develop and u t i l i z e these s t r a t e g i e s o r i g i n a t e d with the f o l l o w i n g p e r c e p t i o n s of the p a r t i c i p a n t s : 1) others do not understand what i t i s l i k e to l i v e with cancer pain; 2) e x i s t i n g s t r a t e g i e s f o r mananging cancer pain and the impact of cancer pain are u n s a t i s f a c t o r y ; and 3) p r i o r i t y s t r a t e g i e s f o r managing cancer pain and i t s impact are those employed f o r the purpose of keeping c o n t r o l . P a r t i c i p a n t s employed v a r i o u s s t r a t e g i e s f o r the purpose of making others understand, managing treatment, and keeping c o n t r o l . This chapter has presented the accounts of the p a t i e n t s as they were c o n s t r u c t e d through the process of c o l l e c t i n g and a n a l y z i n g data. In Chapter F i v e , the major 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 to the r e s e a r c h l i t e r a t u r e reviewed i n Chapter Two, and evaluated i n the l i g h t of r e l e v a n t t h e o r e t i c a l p e r s p e c t i v e s . 95 Chapter 5 DISCUSSION OF THE FINDINGS I n t r o d u c t i o n This chapter w i l l d i s c u s s the f i n d i n g s of the study, as presented i n Chapter Four, i n r e l a t i o n to the p e r s p e c t i v e of other t h e o r i s t s and the f i n d i n g s of other r e s e a r c h e r s . The purpose of t h i s d i s c u s s i o n i s to e x p l a i n the f i n d i n g s i n the curr e n t study and to l o c a t e the study w i t h i n the context of r e l a t e d knowledge. In Chapter Two, a review of the resea r c h l i t e r a t u r e e s t a b l i s h e d that l i t t l e i s known about cancer pain from the p a t i e n t ' s p e r s p e c t i v e , and that f i n d i n g s from e x i s t i n g r e s e a r c h on the t o p i c were scant and i n c o n c l u s i v e . The t h e o r e t i c a l l i t e r a t u r e reviewed provided a way of c o n c e p t u a l i z i n g cancer pain, and a r a t i o n a l e f o r a study from the p a t i e n t ' s p e r s p e c t i v e . This l i t e r a t u r e w i l l serve as a b a s i s f o r the d i s c u s s i o n of the c u r r e n t f i n d i n g s . Where the f i n d i n g s i n c l u d e themes that d i d not a r i s e i n the i n i t i a l review, a d d i t i o n a l r e s e a r c h and t h e o r e t i c a l l i t e r a t u r e w i l l be used. I t was not the i n t e n t of t h i s study to develop r i g o r o u s theory about cancer pai n , but r a t h e r to explore the p a t i e n t ' s p e r s p e c t i v e of the experience. This p e r s p e c t i v e was presented i n terms of three common themes that emerged i n the p a r t i c i p a n t accounts of cancer p a i n . These themes 96 w i l l provide the o r g a n i z a t i o n a l framework f o r the d i s c u s s i o n of the f i n d i n g s as they were presented i n Chapter Four, and the l i t e r a t u r e w i l l be examined i n r e l a t i o n to each of these themes . Cancer Pain None of what was reported by p a r t i c i p a n t s i n t h i s study on the d e s c r i p t i o n of cancer pain was s u r p r i s i n g , given the emphasis i n the l i t e r a t u r e . However, the f i n d i n g s of t h i s study confirmed what had a l r e a d y been found through other methods of r e s e a r c h . P a r t i c i p a n t s u s u a l l y s t a r t e d t h e i r d e s c r i p t i o n of cancer pain by t a l k i n g about the d i f f e r e n t types of pain they had experienced. Although these d e s c r i p t i o n s u s u a l l y i n c l u d e d at l e a s t two d i f f e r e n t types of p a i n , p a r t i c i p a n t s focused more on the d e s c r i p t i o n of intense p a i n . The f i n d i n g that cancer pain i n c l u d e d two types of pa i n , d u l l and acute, i s c o n s i s t e n t with the f i n d i n g s of Foley (1986), and Nehemkis and c o l l e a g u e s (1982). P a t i e n t s i n F o l e y ' s study d e s c r i b e d the two types of cancer pain as "continuous f a i r l y constant discomfort with i n t e r m i t t e n t e xacerbations of pain" (p. 194). Nehemkis and c o l l e a g u e s a l s o d i s t i n g u i s h e d between pain and discomfort i n cancer when they s t a t e d that "pain and discomfort do appear to represent c o n c e p t u a l l y d i f f e r e n t phenomena. . . pain i s perceived as a more i n t e n s e s e n s a t i o n " (p. 225). One 97 p o s s i b l e e x p l a n a t i o n f o r the way i n which p a r t i c i p a n t s d i f f e r e n t i a t e d between these two types of pain could have been to place i n c r e a s e d emphasis on the more inte n s e pain because i t had a much gr e a t e r impact on t h e i r l i v e s . Some authors suggest that not a l l cancer p a t i e n t s reported both d u l l and acute pain as d e s c r i b e d by the p a r t i c i p a n t s xn t h i s study (Donovan & D i l l i o n , 1987). These re s e a r c h e r s found that p a t i e n t s i n t h e i r study r e p o r t e d e i t h e r pain that was " h o r r i b l e to e x c r u c i a t i n g " (p. 85), or " p e r i o d i c to continuous i n nature and moderate to mild i n i n t e n s i t y " (p. 91). Thus, Donovan and D i l l i o n ' s s u b j e c t s reported only one type of p a i n , as opposed to the p a r t i c i p a n t s i n the c u r r e n t study, who f r e q u e n t l y experienced both. There are two p o s s i b l e e x p l a n a t i o n s f o r the d i s c r e p a n c y between t h e i r f i n d i n g s and those of the c u r r e n t study. F i r s t , the p a t i e n t s are from d i f f e r e n t p o p u l a t i o n s . Donovan and D i l l i o n ' s sample was s e l e c t e d from a group of h o s p i t a l i z e d cancer p a t i e n t s , only some of whom experienced p a i n . P a r t i c i p a n t s i n the c u r r e n t study, however, were at t e n d i n g a pain c l i n i c because cancer pain was a major problem f o r them. A second e x p l a n a t i o n might be that Donovan and D i l l i o n used the Melzack Pain Q u e s t i o n n a i r e (MPQ) to e l i c i t t h e i r data. Graham and c o l l e a g u e s (1980), i n t h e i r r e s e a r c h with the MPQ, found that p a t i e n t s ' p e r c e p t i o n of past pain was 98 i n f l u e n c e d by the i n t e n s i t y of pain at the time the MPQ was adm i n i s t e r e d . These r e s e a r c h e r s concluded that the MPQ was best used as a measure of immediate p a i n . I f t h i s i s t r u e , then the use of a s t r u c t u r e d q u e s t i o n n a i r e i n Donovan and D i l l i o n ' s (1987) study might account f o r the f a i l u r e of these p a t i e n t s to i d e n t i f y more than one type of p a i n . Thus, where p a t i e n t s i n e a r l i e r s t u d i e s r e p o r t e d only one type of cancer p a i n , the method used to e l i c i t the d e s c r i p t i o n might account f o r t h i s f i n d i n g . No s t u d i e s using in-depth i n t e r v i e w s , such as those used i n the cur r e n t study, could be found. Although t h i s study's f i n d i n g , that p a t i e n t s i d e n t i f y a p a t t e r n to t h e i r p a i n , i s s i m i l a r to that of Graham and co l l e a g u e s (1980), the patt e r n s d e s c r i b e d by p a t i e n t s i n t h e i r study were d i f f e r e n t . In the cur r e n t study, p a r t i c i p a n t s d e s c r i b e d a p a t t e r n of d u l l continuous pain with episodes of acute, i n t e n s e p a i n . The p a t i e n t s In Graham and c o l l e a g u e s ' study d e s c r i b e d the p a t t e r n of t h e i r cancer pain as " c h a r a c t e r i z e d by episodes of pain i n t e r s p e r s e d with a pain f r e e p e r i o d " (p. 385). Thus, the p a t t e r n of pain d e s c r i b e d by cancer p a t i e n t s i n the cur r e n t study made l e s s r e f e r e n c e to pain f r e e periods than those d e s c r i b e d by p a t i e n t s i n previous s t u d i e s . The f i n d i n g that p a r t i c i p a n t s c o n s i s t e n t l y s e l e c t e d words such as "sharp" and "stabbing" to d e s c r i b e acute p a i n , and " d u l l " and "nagging" to d e s c r i b e l e s s acute pain i s 99 s i m i l a r to f i n d i n g s of e a r l i e r s t u d i e s ( B r e s s l e r et a l . , 1986; Graham et a l . , 1980; Kremer, Atkinson & I g n e l z i , 1982). T h e r e f o r e , the c o n c l u s i o n of previous s t u d i e s that s p e c i f i c words are used by cancer p a t i e n t s to d i s t i n g u i s h between the two types of pain i s c o n s i s t e n t with f i n d i n g s from the c u r r e n t study. A major concern of the p a r t i c i p a n t s i n t e r v i e w e d i n t h i study was the u n p r e d i c t a b i l i t y and u n c o n t r o l l a b i l i t y of the acute episodes of cancer p a i n . Although cancer p a t i e n t s i n e a r l i e r s t u d i e s ( B r e s s l e r et a l . , 1986; Donovan & D i l l i o n , 1987) a l s o i n c l u d e d these elements i n the d e s c r i p t i o n of t h e i r p a i n , p a t i e n t s i n the c u r r e n t study r e l a t e d these elements more s p e c i f i c a l l y to the onset, i n t e n s i t y , and d u r a t i o n of i n t e n s e p a i n . In s p i t e of the u n p r e d i c t a b l e nature of cancer p a i n , some p a r t i c i p a n t s i n the c u r r e n t study could p r e d i c t a time of day when the pain would worsen. They could not, however p r e d i c t the i n t e n s i t y or d u r a t i o n of these episodes. Some p a r t i c i p a n t s i n B r e s s l e r and c o l l e a g u e s ' study i d e n t i f i e d mornings as the most d i f f i c u l t , but they d i d not r e l a t e t h i d i f f i c u l t y to s p e c i f i c elements of t h e i r p a i n . Thus, p a r t i c i p a n t s i n the c u r r e n t study added to what i s a l r e a d y known about the u n p r e d i c t a b l e and u n c o n t r o l l a b l e nature of cancer pain by l i n k i n g these c h a r a c t e r i s t i c s to s p e c i f i c elements of acute p a i n . These p a r t i c i p a n t s d e s c r i b e d acute cancer pain as u n p r e d i c t a b l e i n that they never know when i 100 w i l l s t a r t , how bad i t w i l l become, or how long i t w i l l l a s t . They d e s c r i b e acute cancer pain as u n c o n t r o l l a b l e i n that they are unable to prevent i t from s t a r t i n g , and they are incapable of a l t e r i n g i t s course once i t has begun. The f i n d i n g that p a r t i c i p a n t s are l e s s concerned about the l o c a t i o n of t h e i r pain than about other c h a r a c t e r i s t i c s of t h e i r pain i s not c o n s i s t e n t with e a r l i e r f i n d i n g s ( B r e s s l e r et a l , 1986; Donovan & G i r t o n , 1984; F r a n c i s , 1986; McGuire, 1987). B r e s s l e r and c o l l e a g u e s found that p a t i e n t s o f t e n i n c l u d e d l o c a t i o n i n t h e i r pain d e s c r i p t i o n s and f r e q u e n t l y d i s t i n g u i s h e d between pain that was " i n s i d e " or " o u t s i d e " (p. 53) t h e i r bodies. In w r i t i n g about the c h a r a c t e r i s t i c s of cancer p a i n , Donovan and G i r t o n (1984) suggested that l o c a t i o n of the cancer pain was more o f t e n addressed when m u l t i p l e s i t e s were i n v o l v e d . McGuire (1984) found that p a t i e n t s were more concerned with pain l o c a t i o n when pain was a f f e c t e d by movement. F r a n c i s (1986) repo r t e d that cancer p a t i e n t s i n her study u s u a l l y r e f e r r e d to pain i n r e l a t i o n to i t s l o c a t i o n . There are two p o s s i b l e e x p l a n a t i o n s f o r the f i n d i n g that pain l o c a t i o n seemed l e s s important f o r p a r t i c i p a n t s i n the c u r r e n t study than those i n e a r l i e r s t u d i e s . F i r s t , most p a r t i c i p a n t s i n the c u r r e n t study had experienced cancer pain f o r s e v e r a l years. Second, severe or prolonged pain was o f t e n p e r c e i v e d as all-consuming and, as such, s p e c i f i c l o c a t i o n was l e s s important. However, when the 101 l o c a t i o n of cancer pain was a s s o c i a t e d with p o s s i b l e spread of the d i s e a s e , then the l o c a t i o n of the pain took on a very s p e c i f i c meaning f o r p a r t i c i p a n t s i n the c u r r e n t study. D e s c r i p t i o n s of cancer pain i n the present study are remi n i s c e n t of those i n e a r l i e r r e s e a r c h and, as such, confirm f i n d i n g s from other r e s e a r c h methodologies. Where d i s c r e p a n c i e s i n the d e s c r i p t i o n s of cancer pain d i d occur, d i f f e r e n c e s i n p a t i e n t p o p u l a t i o n s and re s e a r c h methodologies may be thought to account f o r these d i f f e r e n c e s . What the present r e s e a r c h methodology added to our present knowledge of the c h a r a c t e r i s t i c s of cancer pain i s a r i c h n e s s of d e t a i l and depth of d e s c r i p t i o n not p r e v i o u s l y a v a i l a b l e . This c l e a r e r p i c t u r e of what cancer i s l i k e f o r p a r t i c i p a n t s c o n t r i b u t e s to a b e t t e r understanding of the impact of the pain on the p a t i e n t who experiences i t . Impact of Cancer Pain According to the p a r t i c i p a n t s i n the cur r e n t study, cancer pain had a profound impact on t h e i r day-to-day l i v e s . Although p a r t i c i p a n t s acknowledged that they had good and bad days, as the i n t e r v i e w s progressed i t became i n c r e a s i n g l y evident to the researcher that cancer pain had taken over the l i v e s of these p a r t i c i p a n t s . This f i n d i n g conforms to that of an e a r l i e r study by Daut and Clee l a n d (1982), which concluded that c a n c e r - r e l a t e d pain i n t e r f e r e d 102 more with l i f e enjoyment and a c t i v i t y than d i d pain from other causes. Kremer, Atkinson, and I g n e l z i (1982) had s i m i l a r f i n d i n g s . T h e r e f o r e , p e r c e p t i o n s of p a r t i c i p a n t s i n the c u r r e n t study that cancer pain had a profound impact on t h e i r l i v e s , r e a f f i r m s s i m i l a r f i n d i n g s i n previous s t u d i e s . Impact on P h y s i c a l Well-Being The f i n d i n g that f a t i g u e was a major problem f o r p a t i e n t s e x p e r i e n c i n g cancer pain i s c o n s i s t e n t with f i n d i n g s i n e a r l i e r s t u d i e s ( B r e s s l e r et a l . , 1986; F o l e y , 1986; Twycross & Lack, 1983). P a r t i c i p a n t s i n the c u r r e n t study p e r c e i v e d t h e i r f a t i g u e to be r e l a t e d to sleep d i s t u r b a n c e and to e x p e r i e n c i n g prolonged p a i n . The e f f e c t s of pain on sleep were examined i n r e s e a r c h by B r e s s l e r , Hange and McGuire (1987), who found that pain r o u t i n e l y kept 72% of the p a t i e n t s i n t h e i r study from going to s l e e p , and awakened 66% from t h e i r s l e e p . This i s c o n s i s t e n t with the c u r r e n t study's f i n d i n g that p a t i e n t s with cancer pain experienced sleep d i s t u r b a n c e s e i t h e r i n that they could not go to sleep because of the p a i n , or because they were awakened by the p a i n . Other r e s e a r c h e r s have a l s o addressed sleep as a major i s s u e . McCaffery (1979) found that cancer p a t i e n t s d i d not n e c e s s a r i l y awaken from the p a i n , and Donovan and D i l l i o n (1987) s t a t e d that " h a l f of the p a t i e n t s who reported having p a i n , a l s o reported that pain never i n t e r r u p t e d t h e i r s l e e p " 103 (p. 88). Although not a l l p a r t i c i p a n t s i n the c u r r e n t study d e s c r i b e d sleep d i s t u r b a n c e s , most d e s c r i b e d s l e e p i n g very r e s t l e s s l y , s l e e p i n g very l i g h t l y , or being awakened o f t e n by the p a i n . T h e r e f o r e , f i n d i n g s of the c u r r e n t study suggest that sleep d i s t u r b a n c e i s more of a problem f o r p a t i e n t s with cancer pain than was found i n previous s t u d i e s . In the t h e o r e t i c a l l i t e r a t u r e , P i p e r , Lindsey, and Dodd (1987) have c o n c e p t u a l i z e d f a t i g u e as m u l t i - c a u s a l . They c l a i m that pain i s only one of seventeen symptoms i n cancer that i s preceded, accompanied, or followed by f a t i g u e . However, t h e i r d e s c r i p t i o n of the e f f e c t s of f a t i g u e on the person with cancer are confirmed by f i n d i n g s i n the c u r r e n t study that f a t i g u e and pain are part of a v i c i o u s c y c l e which can exacerbate other f a c e t s of the pain experience. Baldonado and S t a h l (1982) t h e o r i z e that one of the causes of f a t i g u e i n p a t i e n t s with cancer pain r e l a t e s to the a f f e c t i v e component of cancer p a i n . " C e r t a i n emotions i n t e r a c t with p a i n , adding to i t s i n t e n s i t y by absorbing the energy we have to deal with i t " (p. 107). These w r i t e r s o f f e r f u r t h e r evidence of t h i s c l a i m with the o b s e r v a t i o n that when one decreases the emotional response i n cancer p a i n , a n a l g e s i c s are more e f f e c t i v e . Speese-Owens (1981) presents another p e r s p e c t i v e on the i n t e r a c t i o n between pain i n t e n s i t y , emotions, and f a t i g u e : "The a c t u a l amount of 104 pain may be the same, but we have l e s s energy with which to handle i t " (p.454). In h i s d i s c u s s i o n of the r e l a t i o n s h i p between f a t i g u e and p a i n , Hidelman (1980) p o s t u l a t e d that f a t i g u e both precedes and causes p a i n . According to t h i s t h e o r i s t , d i s e a s e - r e l a t e d pain acts as an u n r e m i t t i n g stimulus r e s u l t i n g i n f a t i g u e . In t u r n , f a t i g u e i t s e l f generates p a i n . Thus, pain and f a t i g u e i n t e r r e l a t e and i n f l u e n c e each other's t h r e s h o l d s . The f i n d i n g that p a r t i c i p a n t s ' t o l e r a n c e to pain was decreased by f a t i g u e i s reported by s e v e r a l other t h e o r i s t s ( A i r s t a r s , 1987; Bonica, 1979; Foley, 1986; Twycross & Lack, 1983). Twycross and Lack found that f a t i g u e , l a c k of s l e e p , and insomnia i n c r e a s e d p a t i e n t s ' r e p o r t s of s e n s i t i v i t y to p a i n . Conversely, adequate r e s t and sleep helped i n d i v i d u a l s cope with pain of the same i n t e n s i t y more e a s i l y . Contrary to these f i n d i n g s , however, Donovan and D i l l i o n (1987) found that f a t i g u e was "as l i k e l y to have no e f f e c t on pain as to i n c r e a s e the p a i n " (p. 90). Although f i n d i n g s i n the present study o f f e r some support f o r the work of previous r e s e a r c h e r s and t h e o r i s t s on the r e l a t i o n s h i p of pain and f a t i g u e , these newer f i n d i n g s suggest that f a t i g u e i s a f a r g r e a t e r problem f o r these p a t i e n t s than was p r e v i o u s l y thought. Only when one r e a l i z e s the impact of u n r e l e n t i n g f a t i g u e on the day-to-day l i f e of the cancer pain p a t i e n t can one understand the 105 importance of e a r l y r e c o g n i t i o n and a g g r e s s i v e i n t e r v e n t i o n with t h i s phenomenon. A second major concern d e s c r i b e d by p a r t i c i p a n t s i n r e l a t i o n to t h e i r p h y s i c a l w e l l - b e i n g was the p e r c e p t i o n that cancer pain i n t e r f e r e d with m o b i l i t y . P a r t i c i p a n t s explained that with mild to moderate p a i n , t h e i r l e v e l of a c t i v i t y was i n c r e a s e d i n order to d i s t r a c t themselves from the p a i n . However, with very i n t e n s e p a i n , a c t i v i t y was minimal i n order to prevent e x a c e r b a t i o n of the pain and to conserve energy f o r d e a l i n g with the p a i n . The f i n d i n g that p a t i e n t s e x p e r i e n c i n g cancer pain were l e s s a c t i v e was a l s o reported i n r e s e a r c h done by Ahles, Blanchard, and Ruckdeschel (1983). These res e a r c h e r s found that cancer p a t i e n t s with pain spent s i g n i f i c a n t l y l e s s time standing or walking than d i d cancer p a t i e n t s without p a i n . Ahles and c o l l e a g u e s concluded from t h e i r f i n d i n g s that the decreased a c t i v i t y l e v e l r e l a t e d more to the c o g n i t i v e and a f f e c t i v e components of cancer pain than to the i n t e n s i t y . P a r t i c i p a n t s i n the c u r r e n t study, however, c l e a r l y a t t r i b u t e d t h e i r decreased a c t i v i t y to the i n t e n s i t y of pain they experienced. In r e s e a r c h conducted by B r e s s l e r , Hange, and McGuire (1986), i t was found that p h y s i c a l a c t i v i t y i n c r e a s e d the pain of 40% of the p a t i e n t s i n t h e i r study. Movement of any type i n c r e a s e d pain f o r h a l f the p a t i e n t s who p a r t i c i p a t e d i n Donovan and D i l l i o n ' s (1987) study. In c o n t r a s t to the 106 f i n d i n g s of these previous s t u d i e s , p a r t i c i p a n t s i n the curr e n t study p e r c e i v e d that p h y s i c a l a c t i v i t y a c t u a l l y decreased mild to moderate p a i n . Thus, examination of the curr e n t f i n d i n g s i n r e l a t i o n to previous s t u d i e s i s d i f f i c u l t because the previous s t u d i e s have not s p e c i f i e d the type of pain t h e i r p a t i e n t s experienced. What i s very c l e a r from the cur r e n t study i s that the impact of cancer pain on m o b i l i t y i s dependent on the type of pain the p a t i e n t e x p e r i e n c e s . P a r t i c i p a n t s reported that they i n c r e a s e d t h e i r a c t i v i t y i n mild to moderate pain i n order to d i s t r a c t themselves from the pain , and decreased a c t i v i t y i n acute pain to d i m i n i s h the pain and to conserve energy f o r d e a l i n g with i t . P a r t i c i p a n t s a l s o l i n k e d t h e i r diminished a c t i v i t y to c h r o n i c f a t i g u e caused by cancer pai n , a f i n d i n g not e x p l i c i t l y addressed i n the l i t e r a t u r e . Although i t i s recognized that the r e l a t i o n s h i p between m o b i l i t y , f a t i g u e , and cancer pain i s very complex, each pain s t o r y r e i n f o r c e d f o r the resear c h e r the importance of examining the r e l a t i o n s h i p s between these concepts as part of understanding the i n d i v i d u a l ' s experience of cancer p a i n . Impact on S o c i a l Well-Being The l i t e r a t u r e review r e v e a l e d that l i t t l e i s known about the impact of cancer pain on s o c i a l w e l l - b e i n g . P a r t i c i p a n t s i n the cur r e n t study d e s c r i b e d t h i s impact i n r e l a t i o n to i t s e f f e c t on r o l e s and r e l a t i o n s h i p s . I t was 107 f o u n d t h a t p a r t i c i p a n t s a t t e m p t e d t o r e t a i n r o l e s t h e y were no l o n g e r a b l e to p e r f o r m , e x p e r i e n c e d a g r e a t s e n s e of l o s s a t h a v i n g t o r e l i n q u i s h r o l e s , and were v e r y r e l u c t a n t to t a k e on new r o l e s b e c a u s e of t h e i r f e a r of f a i l u r e . P a r t i c i p a n t s p e r c e i v e d t h a t c a n c e r p a i n i n h i b i t e d s o c i a l i n t e r a c t i o n and c o m m u n i c a t i o n w i t h o t h e r s and i n t h i s way i n t e r f e r e d w i t h s o c i a l r e l a t i o n s h i p s . As t h e i n t e r v i e w s p r o g r e s s e d , i t became i n c r e a s i n g l y a p p a r e n t t h a t p a r t i c i p a n t s e x p e r i e n c e d a g r e a t d e a l of d i s t r e s s as a r e s u l t o f t h e i m p a c t o f c a n c e r p a i n on t h e i r s o c i a l w e l l - b e i n g . The f i n d i n g t h a t p a r t i c i p a n t s e x p e r i e n c e d c o n s i d e r a b l e d i s t r e s s i n r e l a t i o n to the i m p a c t of c a n c e r p a i n on r o l e s i s not c o n s i s t e n t w i t h f i n d i n g s f r o m s t u d i e s of c a n c e r p a t i e n t s g e n e r a l l y ( T h o r n e , 1 9 85). T h o m e ' s s u b j e c t s d e s c r i b e d t h e m s e l v e s as a d a p t i n g p o s i t i v e l y to the changes c a u s e d by c a n c e r , and as t a k i n g on new r o l e s to cope w i t h the c a n c e r e x p e r i e n c e . S t u d i e s on p a t i e n t s w i t h a c u t e p a i n o f n o n - m a l i g n a n t o r i g i n (Kremer et a l . , 1982), a l s o p r o v i d e d i n s i g h t s as to why p a t i e n t s w i t h c a n c e r p a i n e x p e r i e n c e more d i s t r e s s and a r e t h e r e f o r e l e s s a b l e t o p e r f o r m e x p e c t e d r o l e s t h a n p a i n p a t i e n t s g e n e r a l l y . Kremer and c o l l e a g u e s (1982) f o u n d t h a t " c a n c e r p a i n p a t i e n t s r e p o r t a r e l i a b l y g r e a t e r a f f e c t i v e component to t h e i r p a i n t h a n b e n i g n p a i n p a t i e n t s c o m p l a i n i n g of the same i n t e n s i t y of p a i n " ( p . 1 6 1 ) . A l s o , 108 Ahles and c o l l e a g u e s (1983) matched cancer p a t i e n t s with pain to cancer p a t i e n t s who were p a i n - f r e e , and the f i n d i n g s " revealed a c o n s i s t e n t p a t t e r n of e l e v a t i o n of scores on the p s y c h o l o g i c a l assessment d e v i c e s " (p. 285) f o r the cancer p a t i e n t s with p a i n . Thus, the f i n d i n g from t h i s and other research s t u d i e s , that cancer pain causes more of an impact on r o l e performance and e x p e c t a t i o n s than does cancer or pain independently, i s most l i k e l y a r e s u l t of the s p e c i a l a f f e c t i v e and c o g n i t i v e components of cancer p a i n . P a r t i c i p a n t s ' p e r c e p t i o n that cancer pain i n t e r f e r e d with s o c i a l r e l a t i o n s h i p s was addressed i n e a r l i e r s t u d i e s , but the f i n d i n g s were i n c o n c l u s i v e . In Cleeland's (1984) study, i t was found that " p e r s i s t e n t pain i s o f t e n a source of d i s t r e s s f o r others as w e l l as the p a t i e n t " (p. 2635). Ahles and c o l l e a g u e s ' (1983) su b j e c t s " b e l i e v e d that s i g n i f i c a n t others i n t h e i r environment knew when they were i n pain or e x p e r i e n c i n g exacerbations of t h e i r p a i n " (p. 283). These p a t i e n t s b e l i e v e d that others could i n t e r p r e t pain from behaviors such as f a c i a l e x p r e s s i o n , changes i n mood, going to bed, and complaints of p a i n . However, i t i s not c l e a r from the f i n d i n g s of e i t h e r study that the d i s t r e s s l e v e l s or pain behaviors had an e f f e c t on r e l a t i o n s h i p s . In c o n t r a s t to Cleeland's study (1984), Hays (1986), i n a study of hospice u t i l i z a t i o n , found that f a m i l i e s who cared f o r cancer p a t i e n t s at home experienced l e s s d i s t r e s s over symptoms, " e s p e c i a l l y p a i n " (p. 323), I 109 than d i d f a m i l i e s of i n p a t i e n t s . In a d d i t i o n , Hays (1986) concluded that f a m i l y members who were i n v o l v e d with the care of the cancer p a t i e n t experienced l e s s d i s t r e s s over the p a i n . Another study ( K e s s e r l i n g , Lindsey, & Lovejoy, 1986) found that p a t i e n t s "who f e l t a f f i r m e d by others tended to view t h e i r i l l n e s s experience more f a v o r a b l y " (p. 156). In c o n t r a s t to some of these e a r l i e r f i n d i n g s , p a r t i c i p a n t s i n the present study b e l i e v e d that t h e i r cancer pain was d i s t r e s s i n g f o r others to observe, and as a r e s u l t of t h i s c o n v i c t i o n chose to i s o l a t e themselves from others when they were i n p a i n . Because of the p a u c i t y Of f i n d i n g s on the e f f e c t s of cancer pain on r o l e s and r e l a t i o n s h i p s , a review of p s y c h o l o g i c a l s t u d i e s performed on cancer pain p a t i e n t s was undertaken. I t was a n t i c i p a t e d that such f i n d i n g s would o f f e r i n s i g h t s to help e x p l a i n p a r t i c i p a n t s ' p e r c e p t i o n s of these e f f e c t s i n the c u r r e n t study. Turk and Kerns (1983) found that many of the cancer pain p a t i e n t s they i n t e r v i e w e d d e s c r i b e d themselves as " f e e l i n g hopeless, viewed t h e i r s i t u a t i o n as hopeless, and appraised t h e i r s i t u a t i o n as one of i n e v i t a b l e d e t e r i o r a t i o n " (p. 58). S p i e g e l and Bloom (1983) found that pain i n p a t i e n t s with cancer c o r r e l a t e d p o s i t i v e l y with each of the f o l l o w i n g : mood d i s t u r b a n c e , d e p r e s s i o n , a n x i e t y , and f a t i g u e . Fotopoulos, Graham, and Cook (1979), i n a study on 17 cancer p a t i e n t s , found that p a t i e n t s with s i g n i f i c a n t 110 pain had lower ego s t r e n g t h scores and an i n t e r n a l , r a t h e r than an e x t e r n a l , locus of c o n t r o l . What the f i n d i n g s of these three s t u d i e s suggest to t h i s r e s e a r c h e r i s a p s y c h o l o g i c a l p r o f i l e of cancer pain p a t i e n t s i n which s p e c i f i c t r a i t s are present that have the p o t e n t i a l to i n f l u e n c e p a r t i c i p a n t p e r c e p t i o n s , and t h e r e f o r e t h e i r behavior. Thus, as p a r t i c i p a n t s i n the cu r r e n t study explained how they coped with the impact of cancer pain on t h e i r s o c i a l w e l l - b e i n g , the moods and behaviors they d e s c r i b e d were rem i n i s c e n t of those i n the p s y c h o l o g i c a l s t u d i e s reviewed (Fotopoulos et a l . , 1979; S p i e g e l & Bloom, 1983; Turk & Kerns, 1983). As p a t i e n t s explained the i n t e n s i t y of f e e l i n g s and the depth of the d e s p a i r they experienced, i t became e a s i e r to understand t h e i r d e c i s i o n s i n r e l a t i o n to s o c i a l behavior. Although t h i s study does not attempt to o f f e r support fo r f i n d i n g s gained by q u a n t i t a t i v e methods, what cu r r e n t f i n d i n g s suggest are l i n k s between the a f f e c t i v e components of cancer pain and p a r t i c i p a n t s ' p e r c e p t i o n s of the impact of cancer pain on t h e i r s o c i a l w e l l - b e i n g . Such a r e l a t i o n s h i p i m p l i e s that one cannot f u l l y understand the impact of cancer pain on the p a t i e n t ' s s o c i a l w e l l - b e i n g without f u l l y e x p l o r i n g the a f f e c t i v e component of cancer p a i n . I l l Impact on E m o t i o n a l W e l l - B e i n g In l i g h t of t h e p s y c h o l o g i c a l s t u d i e s d i s c u s s e d i n t h e p r e v i o u s s e c t i o n , i t i s not s u r p r i s i n g t h a t p a r t i c i p a n t s i n the c u r r e n t s t u d y p e r c e i v e d the g r e a t e s t i m p a c t of c a n c e r p a i n to be on t h e i r e m o t i o n a l w e l l - b e i n g . What the c u r r e n t s t u d y adds to our i n s i g h t s a r e p o s s i b l e s o u r c e s of t h e f e e l i n g s and mood s t a t e s e x p e r i e n c e d , and a g r e a t e r u n d e r s t a n d i n g of the ex t r e m e s of t h e f e e l i n g s t a t e s w h i c h t h e s e p a r t i c i p a n t s d e s c r i b e . T h i s s t u d y f o u n d t h a t t h e meaning t h e p a r t i c i p a n t a t t r i b u t e s to c a n c e r p a i n , and t h e p a r t i c i p a n t ' s p a s t e x p e r i e n c e w i t h p a i n , d e t e r m i n e i t s im p a c t on t h e i n d i v i d u a l ' s e m o t i o n a l w e l l - b e i n g . T h i s f i n d i n g i s s i m i l a r to the v i e w of s e v e r a l t h e o r i s t s and r e s e a r c h e r s ( A h l e s e t a l . , 1983; B a l d o n a d o & S t a h l , 1982; B e a l e s , 1986; T u r k & R e n n e r t , 1 9 8 1 ) . I n e x p l o r i n g the i m p a c t of c a n c e r p a i n on a p a t i e n t ' s w e l l - b e i n g , B e a l e s f o u n d t h a t " t h e r e l a t i v e p r i o r i t y a c c o r d e d to p a r t i c u l a r s i g n a l s depends i n p a r t on the meaning and s i g n i f i c a n c e a t t r i b u t e d to them on the b a s i s o f p r e v i o u s e x p e r i e n c e " ( p . 4 0 8 ) . T u r k and R e n n e r t (1981) f o u n d t h a t t h e meaning a s s i g n e d to c a n c e r p a i n by p a t i e n t s i n t h e i r s t u d y was i n f l u e n c e d by b o t h t h e b e l i e f s and a t t i t u d e s the p a t i e n t h e l d about p a i n , and by t h e p a t i e n t ' s p e r c e p t i o n of r e s o u r c e s a v a i l a b l e t o cope w i t h the p a i n . I n a d d i t i o n , B a l d o n a d o and S t a h l (1982) f o u n d t h a t t h e meaning 112 attached to pain-producing s i t u a t i o n s , and to past experiences of coping with p a i n , i n f l u e n c e d pain p e r c e p t i o n . These r e s e a r c h e r s a l s o concluded that f e e l i n g s of anxiety and f e a r p r e c i p i t a t e d by cancer pain are a s s o c i a t e d with the p a t i e n t ' s i n t e r p r e t a t i o n of the p a i n . The f i n d i n g that p a t i e n t s experience a great deal of an x i e t y r e l a t e d to the source and meaning of t h e i r pain i s s i m i l a r to the work of Ahles and c o l l e a g u e s (1983). These re s e a r c h e r s found that 73% of the p a t i e n t s i n t h e i r study "reported being given no i n f o r m a t i o n concerning the source or meaning of t h e i r p a i n " (p. 286). They a l s o found a high c o r r e l a t i o n between p a t i e n t s not understanding the source or meaning of t h e i r pain and high d i s t r e s s l e v e l s . Moreover, these r e s e a r c h e r s found that the m a j o r i t y of t h e i r s u b j e c t s s t a t e d that "they were a f r a i d that pain meant that t h e i r c o n d i t i o n was d e t e r i o r a t i n g " (p. 284). Thus, the f i n d i n g from the cu r r e n t study, that not knowing the meaning of t h e i r pain i s a source of a n x i e t y f o r p a r t i c i p a n t s , r e a f f i r m s the f i n d i n g s of e a r l i e r s t u d i e s . The f i n d i n g that p a r t i c i p a n t s l e a r n e d , through experience with cancer p a i n , to a s s o c i a t e new pain with recurrence of the d i s e a s e a l s o confirms previous work. What these c u r r e n t and previous f i n d i n g s imply are that knowledge of the meaning cancer p a t i e n t s a s s i g n to t h e i r pain and to t h e i r past experience with cancer pain i s e s s e n t i a l to understanding the p a t i e n t ' s experience. 113 P a r t i c i p a n t s i n the c u r r e n t study t a l k e d at l e n g t h about f e e l i n g s of f r u s t r a t i o n and anger i n r e l a t i o n to the impact of cancer pain on t h e i r l i v e s . Although these f e e l i n g s are addressed i n the l i t e r a t u r e on cancer, l i t t l e was found i n the l i t e r a t u r e to l i n k f r u s t r a t i o n and anger to the impact of cancer pain on the p a t i e n t . Sources of anger and f r u s t r a t i o n f o r p a r t i c i p a n t s i n the c u r r e n t study i n c l u d e d the i n a b i l i t y to perform expected r o l e s because of the cancer pain and decreased energy l e v e l s , and the l o s s of c o n t r o l over t h e i r p a i n , t h e i r f e e l i n g s , and t h e i r l i v e s . Thus, these f i n d i n g s from the c u r r e n t study suggest that where anger and f r u s t r a t i o n are present i n p a t i e n t s with cancer p a i n , e x p l o r i n g the source of these f e e l i n g s with the p a t i e n t w i l l enhance our understanding of the p a t i e n t ' s experience . The f i n d i n g that a l l p a r t i c i p a n t s had experienced thoughts of s u i c i d e as a r e s u l t of the impact of cancer pain was not e x p l i c i t l y i d e n t i f i e d i n the f i n d i n g s of e a r l i e r r e s e a r c h e r s . P s y c h o l o g i c a l t e s t s c o r e s , such as those rep o r t e d by Ahles and c o l l e a g u e s , suggest the p o t e n t i a l f o r s u i c i d e i n these c l i e n t s . They found that p a t i e n t s e x p e r i e n c i n g cancer pain scored s i g n i f i c a n t l y higher on measures of depression than a matched group of cancer p a t i e n t s who were p a i n - f r e e . Pain p a t i e n t s were a l s o found to have " i n c r e a s e d a n x i e t y , h o s t i l i t y , s o m a t i z a t i o n , " and " i n c r e a s e d i r r i t a b i l i t y " (p.281). However, w i t h i n the scope 114 of the l i t e r a t u r e reviewed, no s t u d i e s were found that i n t h e i r f i n d i n g s i n c l u d e d the v e r b a l i z a t i o n of s u i c i d a l thoughts by p a t i e n t s with cancer p a i n . One p o s s i b l e e x p l a n a t i o n f o r the absence of these f i n d i n g s i n e a r l i e r s t u d i e s could be that these thoughts were t r a n s i e n t f o r these p a r t i c i p a n t s , and u s u a l l y only occurred i n a s s o c i a t i o n with very severe pain or in t e n s e f e e l i n g s of h e l p l e s s n e s s . Thus, once the acute episode of pain or in t e n s e emotion was past, the p a r t i c i p a n t s may have dismissed these thoughts. However, e x p l o r a t i o n of these s u i c i d a l thoughts with p a r t i c i p a n t s suggests that the thoughts themselves and what they imply are a source of anxiety f o r some p a r t i c i p a n t s . Although a l l p a r t i c i p a n t s t a l k e d q u i t e openly about t h e i r s u i c i d a l thoughts to the re s e a r c h e r , t h i s t o p i c was not r a i s e d by the p a r t i c i p a n t u n t i l s e v e r a l other r e l a t e d f e e l i n g s were explo r e d . The f i n d i n g i n the present study that p a r t i c i p a n t s f e a r the r e t u r n of severe pain i s s i m i l a r to that of Turk and Rennert (1981) who found that "many p a t i e n t s are anxious with t h e i r own a b i l i t y to cope with int e n s e and prolonged p a i n " (p. 950). Baldonado and S t a h l (1982) a l s o found that the f e a r of pain i n cancer i s one of the most "acute and imminent f e a r s experienced by both the p a t i e n t and h i s f a m i l y " (p. 107). Thus, part of the s u f f e r i n g experienced by these p a t i e n t s was the a n t i c i p a t i o n of the r e t u r n of the acute p a i n f u l episodes and the worry about how they would 115 cope when that happened. T h e r e f o r e , the p o t e n t i a l f o r a n t i c i p a t o r y f e a r to exacerbate both d u l l and acute cancer pain i n these p a t i e n t s i s very r e a l . Recognizing that the parameters of s u f f e r i n g f a r exceed those of cancer pain i t s e l f should g r e a t l y enhance our understanding of the t o t a l experience f o r these p a t i e n t s . The experience of t h i s r e s e a r c h e r suggests that i d e n t i f i c a t i o n of a n t i c i p a t o r y f e a r i n these p a t i e n t s w i l l be u n l i k e l y unless p a t i e n t s have the opp o r t u n i t y to explore these and other f e e l i n g s i n some depth. Another f i n d i n g from the cur r e n t study i s that p a r t i c i p a n t s experience f e e l i n g s of extreme h e l p l e s s n e s s and l o s s of c o n t r o l when they undergo severe or prolonged p a i n . This f i n d i n g confirms numerous s t u d i e s i n the t h e o r e t i c a l and r e s e a r c h l i t e r a t u r e (Baldonado and S t a h l , 1982; Cl e e l a n d , 1984; Copp, 1974; Fotopoulos, Graham, & Cook, 1979; S p i e g e l and Bloom, 1983). Furthermore, p a r t i c i p a n t r e p o r t s i n the cur r e n t study concur with Copp's (1985) statement that many p a t i e n t s " f e a r l o s s of c o n t r o l and dependence as much as the pain i t s e l f " (p. 69). F i n d i n g s of the c u r r e n t study a l s o suggest that these extreme f e e l i n g s of h e l p l e s s n e s s and l o s s of c o n t r o l are l i n k e d to other f a c e t s of the experience. P a r t i c i p a n t s d e s c r i b e d these f e e l i n g s as p r e c i p i t a t e d by very i n t e n s e or prolonged p a i n , extreme f a t i g u e , i n t e n s e emotional responses, s o c i a l l o s s e s , and l o s s of c o n t r o l over t h e i r l i v e s . The reason these 116 l i n k s were not i d e n t i f i e d i n previous s t u d i e s may be that the t o o l of the in-depth i n t e r v i e w was not u t i l i z e d . Coping with Cancer Pain and I t s Impact Although p a r t i c i p a n t s i n the c u r r e n t study provided the r e s e a r c h e r with a very c l e a r d e s c r i p t i o n of t h e i r cancer pain and the impact of t h i s p a i n , i t was not u n t i l they d e s c r i b e d the s t r a t e g i e s they used to cope with t h i s pain and i t s impact that the r e s e a r c h e r gained a deeper understanding of t h e i r experience. Thus, i t was emphasized f o r the r e s e a r c h e r that e x p l o r a t i o n of the s t r a t e g i e s used to cope with cancer pain and i t s impact was e s s e n t i a l to understanding the p a r t i c i p a n t ' s experience. Making Others Understand The f i n d i n g from the c u r r e n t study that p a r t i c i p a n t s b e l i e v e d that others d i d not understand what i t i s l i k e to l i v e with cancer pain was not s u r p r i s i n g , given the emphasis i n the l i t e r a t u r e . Although p a r t i c i p a n t s used very unique and c r e a t i v e ways to communicate t h e i r pain to o t h e r s , i t was g e n e r a l l y held by p a r t i c i p a n t s i n t e r v i e w e d that others d i d not understand t h e i r experience. The f i n d i n g of the present study that p a r t i c i p a n t s employed very c r e a t i v e and d e s c r i p t i v e language f o r the purpose of communicating t h e i r pain to others i s reminiscent of the f i n d i n g s of e a r l i e r s t u d i e s ( B r e s s l e r et a l . , 1986; Graham et a l . , 1980; Kremer et a l . , 1982). The d i f f i c u l t y 117 with these s t r a t e g i e s , according to C r a i g and Prkachin (1983), i s that such s t r a t e g i e s are o f t e n l i m i t e d to " n o n - a f f e c t i v e sensory q u a l i t i e s " and that the " r e l a t i v e l y r i c h set of d e s c r i p t o r s and a s s o c i a t i o n s a v a i l a b l e r e f e r s p r i m a r i l y to the p h y s i c a l p r o p e r t i e s of the e x t e r n a l environment r a t h e r than s u b j e c t i v e f e e l i n g s t a t e s " (p. 154). Melzack and Dennis (1980) concur with the f i n d i n g that communicating the a f f e c t i v e component i s d i f f i c u l t . The a f f e c t i v e dimension i s d i f f i c u l t to express - words such as exhausting, s i c k e n i n g , t e r r i f y i n g , c r u e l , v i c i o u s and k i l l i n g come c l o s e but are o f t e n inadequate d e s c r i p t i o n s of the a f f e c t i v e experience of the pain of cancer (p . 19 ) . Melzack and Dennis a l s o s t a t e d that p a t i e n t s ' d e s c r i p t i o n s were more o f t e n focused on p h y s i c a l s e n s a t i o n s of cancer pain , and were l e s s l i k e l y to d e s c r i b e the a f f e c t i v e component of cancer p a i n . Thus, part of the d i f f i c u l t y faced by p a r t i c i p a n t s i n making others understand could be the s u b j e c t i v e nature of the experience i t s e l f . Those pa r t s of the experience that are most d i f f i c u l t to t o l e r a t e are a l s o the most d i f f i c u l t to communicate. Another f i n d i n g that h i g h l i g h t e d the p a r t i c i p a n t s ' d i f f i c u l t y i n communicating about t h e i r pain was t h e i r p e r c e p t i o n s of how t h i s was r e c e i v e d by o t h e r s . 118 The p e r c e p t i o n of p a r t i c i p a n t s i n the c u r r e n t study that others d i d not want to hear, di d not b e l i e v e , or d i d not l i s t e n to the p a t i e n t ' s report of pain i s w e l l documented i n the l i t e r a t u r e (Anderson, 1982; Donovan & D i l l i o n , 1987; McCaffery, 1979; Rankin and Snider, 1984; Twycross & Lack, 1983). Several authors suggest reasons as to why t h i s occurs . One study (Donovan and D i l l i o n , 1987) concluded that nurses and other h e a l t h care p r o f e s s i o n a l s f a i l e d to recognize pain i n more than h a l f of the p a t i e n t s e x p e r i e n c i n g pain i n t h e i r study, which might account f o r p a t i e n t s ' r e p o r t s that others do not want to hear about t h e i r p a i n . These r e s e a r c h e r s found that "only 43% of p a t i e n t s who had pain could r e c a l l a nurse having d i s c u s s e d t h e i r pain with them" (p. 89). In a d d i t i o n , only 28% of p a t i e n t s who had experienced pain i n the past 72 hours had had t h i s noted on t h e i r progress note. Donovan and D i l l i o n concluded from these f i n d i n g s that systematic assessment of p a t i e n t s r e g a r d i n g t h e i r comfort l e v e l was not being c a r r i e d out. S e v e r a l t h e o r i s t s have a l s o explored the i s s u e of why p r o f e s s i o n a l s f a i l to b e l i e v e or to l i s t e n to p a t i e n t s ' r e p o r t of cancer p a i n . Donovan and G i r t o n (1984) proposed that nurses avoid pain i n others as a way of escaping t h e i r own pain which i s s i m i l a r to the p e r c e p t i o n of p a r t i c i p a n t s i n t h i s study that p r o f e s s i o n a l s do not want to hear about 119 t h e i r p a i n . C r a i g and Prkachin (1983) suggested the l i m i t a t i o n s of the s e l f - r e p o r t of pain as one of the p o s s i b l e causes of p r o f e s s i o n a l s not understanding the p a t i e n t ' s p a i n . ... the problem i s coming to know another person's pain e x p e r i e n c e s . Communications of pain appeal to the observer's a b i l i t y to match the message with memories of t h e i r own experiences and c o n t a c t s with other people e x p e r i e n c i n g s i m i l a r d i s t r e s s . Those i n a p o s i t i o n to act upon r e p o r t s of another's d i s t r e s s are o b l i g e d to presume at l e a s t strong s i m i l a r i t i e s between t h e i r own and the s u f f e r i n g person's experiences (p. 154). What these authors have suggested i s that s i n c e p r o f e s s i o n a l s have no s i m i l a r experience to that of pain p a t i e n t s , they cannot f u l l y understand the p a t i e n t ' s p a i n . In h i s l a t e r w r i t i n g , C r a i g (1984) cautions those who work with pain p a t i e n t s that i f "the p a t i e n t i s f u r t h e r d i s t r e s s e d by f e e l i n g he/she i s not b e l i e v e d , the pain i s o f t e n exacerbated by the i n t e r p l a y of p s y c h o l o g i c a l v a r i a b l e s " (p. 157). From C r a i g ' s p e r s p e c t i v e , the i n t e r v i e w e r , the p a t i e n t , and the s i t u a t i o n i n f l u e n c e the r e p o r t . Another study (Ahles et a l . , 1983), which looked at ways to i n c r e a s e the i n c i d e n c e of cancer p a t i e n t s r e p o r t i n g t h e i r p a i n , found that i f anxiety and f e a r can be decreased i n these p a t i e n t s , the a f f e c t i v e component can be a l t e r e d , 120 and t h i s w i l l i n c r e a s e the frequency of t h e i r r e p o r t s of p a i n . The f i n d i n g that p a r t i c i p a n t s do not always t e l l others about t h e i r pain was an alarming but expected outcome of t h i s study, given the emphasis i n the l i t e r a t u r e . C r a i g (1984) found that "people tend to monitor t h e i r pain r e p o r t s very c a r e f u l l y because of the need to maintain high l e v e l s of c o n t r o l " (p. 174). Wall (1979) expressed the concern that "the v e r b a l r e p o r t of pain comes i n t o play very l a t e i n the pain episode". In h i s resea r c h r e p o r t , C l e e l a n d (1984) st a t e d that " p a t i e n t s want to be thought of as good p a t i e n t s that can withstand p a i n , " and they do not want to t e l l t h e i r doctor that "the a n a l g e s i c s that have been p r e s c r i b e d are i n e f f e c t i v e " (p. 2640). Sternbach's (1974) work explores the behavior of the "nonresponder" (p. 197), the p a t i e n t who i s " c l e a r l y i n severe p a i n , but v o i c e s no complaint." Sternbach t h e o r i z es that t h i s " s i l e n t s u f f e r i n g " i s learned e a r l y i n childhood and that " i n d i v i d u a l s choose t h i s behavior" i n exchange f o r "love and r e s p e c t f u l a d m i r a t i o n " (p. 197). Although many ideas have been put f o r t h to e x p l a i n why p a t i e n t s would not t e l l others about t h e i r p a i n , i t seemed when t h i s occurred i n the cur r e n t study, that t h i s was a l o g i c a l s t r a t e g y f o r coping with cancer pain and i t s impact. The f i n d i n g i n t h i s study, that the presence of others i n pain a f f e c t s the way p a r t i c i p a n t s i n t e r p r e t and r e p o r t 121 t h e i r p a i n , was not reported i n the l i t e r a t u r e . S i m i l a r l y , the f i n d i n g that p a r t i c i p a n t s were ashamed of t h e i r pain and " f e l t l i k e a baby" when they complained about i t , was a l s o not found. Although the a f f e c t i v e component of cancer pain i s w e l l documented i n the l i t e r a t u r e , l i t t l e could be found to e x p l a i n the f e e l i n g s of g u i l t about t a l k i n g about pain and not being able to cope with pain and i t s impact as d e s c r i b e d by p a r t i c i p a n t s i n t h i s study. U l t i m a t e l y , where p a r t i c i p a n t s i n the c u r r e n t study expressed the f e e l i n g that others d i d not understand what t h e i r pain was l i k e , the s u b j e c t i v e nature of pain and inadequate assessment by h e a l t h care p r o f e s s i o n a l s was thought to account f o r t h i s . Both of these f a c t o r s are w e l l documented i n the l i t e r a t u r e . What became c l e a r e r f o r the r e s e a r c h e r , as the i n t e r v i e w s progressed, was an understanding of why p a r t i c i p a n t s sometimes e l e c t e d not to t e l l others about t h e i r p a i n . This i n s i g h t was gained by l o o k i n g at the p a r t i c i p a n t s ' d e c i s i o n to not t e l l others about t h e i r pain w i t h i n the context of t h e i r whole experience. I t was a l s o made c l e a r to the r e s e a r c h e r that e x p l a i n i n g t h e i r r e l u c t a n c e to t a l k about t h e i r pain was very important f o r these p a r t i c i p a n t s . Managing Treatment The f i n d i n g that p a r t i c i p a n t s were d i s s a t i s f i e d with e x i s t i n g pain c o n t r o l s t r a t e g i e s and p e r c e i v e d them as 122 i n e f f e c t i v e was not s u r p r i s i n g , given the c o n c l u s i o n s of e a r l i e r r e s e a r c h e r s and t h e o r i s t s . The f i n d i n g s of the c u r r e n t study merely confirmed what had a l r e a d y been found by other research methods. The f i n d i n g that p a r t i c i p a n t s were able to d i s t r a c t themselves from mild to moderate pain , but were unable to concentrate w e l l enough to d i s t r a c t themselves from severe p a i n , c o n t r a d i c t e d e a r l i e r f i n d i n g s of Donovan and D i l l i o n (1987). These r e s e a r c h e r s reported that many of the nonpharmacologic measures f o r pain r e l i e f "provided no pain r e l i e f or even i n t e n s i f i e d pain f o r o t h e r s " (p. 91). These r e s e a r c h e r s d i d not, however, s p e c i f y the type of pain the p a t i e n t experienced, or suggest reasons f o r the poor r e s u l t s of the nonpharmacologic measures. The f i n d i n g that d i s t r a c t i o n s t r a t e g i e s improved p a r t i c i p a n t s ' f e e l i n g of w e l l - b e i n g and t h e i r o v e r a l l mood s t a t e was not reported i n e a r l i e r s t u d i e s . This f i n d i n g suggests that p a r t i c i p a n t s might use d i s t r a c t i o n s t r a t e g i e s not only as a way of minimizing the p a i n , but a l s o as a way of minimizing the impact of p a i n . This would t h e r e f o r e be an important c o n s i d e r a t i o n when e x p l o r i n g the u s e f u l n e s s of these s t r a t e g i e s with cancer pain p a t i e n t s . Another i n s i g h t gained by the r e s e a r c h e r i n r e l a t i o n to d i s t r a c t i o n s t r a t e g i e s was that many techniques were h i g h l y o r i g i n a l , and the e f f e c t i v e n e s s of these s t r a t e g i e s v a r i e d g r e a t l y between i n d i v i d u a l s . What became apparent as these 123 s t r a t e g i e s were explored with the p a r t i c i p a n t s , was t h e i r v u l n e r a b i l i t y to c r i t i c i s m or seeming f o o l i s h to o t h e r s . Thus, i t was emphasized to the resear c h e r t h a t , f o r these p a r t i c i p a n t s , e x p l o r i n g the s t r a t e g i e s they had used to manage t h e i r pain with a h e a l t h care p r o f e s s i o n a l was a very s e n s i t i v e area f o r them. The f i n d i n g that p a t i e n t s d i d not take t h e i r pain medication as p r e s c r i b e d was s i m i l a r to e a r l i e r f i n d i n g s i n both the t h e o r e t i c a l and re s e a r c h l i t e r a t u r e . One reason given by p a r t i c i p a n t s i n t h i s study was f e a r of being a d d i c t e d to a n a r c o t i c . This p e r c e p t i o n from the cur r e n t study o f f e r s support f o r Cleeland's (1984) f i n d i n g . P a t i e n t s may ref u s e to f o l l o w a c a r e f u l l y designed n a r c o t i c schedule, t a k i n g drugs only when the pain i s unbearable... p a t i e n t s do not want to thin k of themselves or have others t h i n k of them as a d d i c t s (p. 2640). In t h e i r 1983 study, Ahles and c o l l e a g u e s examined me d i c a t i o n - t a k i n g i n r e l a t i o n to sensory, a f f e c t i v e , and c o g n i t i v e components of p a i n . They found that medication use " i s not r e l a t e d to depression and an x i e t y as g l o b a l dimensions but r a t h e r to a f f e c t i v e v a r i a b l e s s p e c i f i c a l l y l i n k e d to the pain experience" (p. 286). They a l s o found a p o s i t i v e c o r r e l a t i o n between i n t e n s i t y of pain , the a f f e c t i v e component of p a i n , the p a t i e n t ' s e v a l u a t i o n of 124 p a i n , and t a k i n g medication. Thus, the f i n d i n g s of the cu r r e n t study and the work of e a r l i e r r e s e a r c h e r s suggest that the type of pain experienced, and the a f f e c t i v e component of cancer p a i n , i n f l u e n c e p a r t i c i p a n t d e c i s i o n s i n managing t h e i r p a i n . A second reason given by p a r t i c i p a n t s f o r not t a k i n g medication was f e a r of si d e e f f e c t s . Although the s i d e e f f e c t s mentioned by p a r t i c i p a n t s , such as l o s s of c o n t r o l over thought processes, extreme drowsiness, nightmares, and severe c o n s t i p a t i o n are w e l l documented i n drug s t u d i e s i n the l i t e r a t u r e , l i t t l e could be found to f u r t h e r our understanding of what these side e f f e c t s would be l i k e f o r the i n d i v i d u a l who i s a l r e a d y undermined by cancer pain and i t s impact. However, these p a r t i c i p a n t s provided v i v i d d e s c r i p t i o n s of what these side e f f e c t s meant f o r them. P l a c i n g these side e f f e c t s w i t h i n the context of t h e i r day-to-day l i v e s enabled the r e s e a r c h e r to understand t h e i r d e c i s i o n s about taking medication. I t a l s o r e i n f o r c e d the understanding t h a t , before we can expect cancer pain p a t i e n t s to take medication as p r e s c r i b e d , we w i l l have reduce the impact of other f a c e t s of the cancer pain experience. Keeping C o n t r o l The f i n d i n g that p a t i e n t s do not take t h e i r medication as p r e s c r i b e d as a means of keeping c o n t r o l confirms an 125 e a r l i e r r e t r o s p e c t i v e study by A u s t i n , Eyres, H e f f e r i n , and Krasnow (1986). Half of the p a t i e n t s i n t h e i r study who r e p o r t e d severe pain d i d not take t h e i r medication as p r e s c r i b e d . "Concerns about a d d i c t i o n and a d e s i r e to maintain personal c o n t r o l " (p. 64) were the reasons g i v e n . The f i n d i n g i n t h i s study that keeping c o n t r o l was more important than c o n t r o l l i n g pain was unexpected. The idea that p a t i e n t s would knowingly choose to have a c e r t a i n amout of pain to maintain c o n t r o l was s u r p r i s i n g , but e a s i l y understood when viewed from the p a t i e n t ' s p e r s p e c t i v e . This f i n d i n g h i g h l i g h t e d f o r the r e s e a r c h e r the importance of e x p l o r i n g p a t i e n t s ' decision-making i n r e l a t i o n to t a k i n g or not t a k i n g m e d i c a t i o n s . As the i n t e r v i e w s progressed, i t a l s o became c l e a r to the r e s e a r c h e r that the d e c i s i o n s made i n r e l a t i o n to t a k i n g or not taking medications may or may not be shared with the h e a l t h care p r o f e s s i o n a l s working with these p a r t i c i p a n t s . In her work on p s y c h o l o g i c a l pain t h e o r i e s , Fordham (1986) wrote " l o s s of c o n t r o l i s an important aspect of c h r o n i c pain l e a d i n g to h e l p l e s s n e s s , d e s p a i r , and pessimism" (p. 364). T h e r e f o r e , i t i s understandable that p a t i e n t s who had experienced even a t r a n s i t i o n a l l o s s of c o n t r o l would l e a r n to value c o n t r o l h i g h l y . And f o r p a r t i c i p a n t s i n t h i s study, making d e c i s i o n s about t a k i n g or not t a k i n g medications was one of the few areas i n t h e i r l i v e s over which they had any remaining c o n t r o l . 126 Probably the most valued i n s i g h t gained i n t h i s study with regard to management of pain was the p a r t i c i p a n t s ' p e r s p e c t i v e on who was a c t u a l l y i t s manager. P a r t i c i p a n t s c l e a r l y viewed themselves as the managers of t h e i r p a i n , of t h e i r treatment, and of t h e i r l i v e s . Health care p r o f e s s i o n a l s and a v a i l a b l e treatments were simply resources which the p a r t i c i p a n t s e l e c t e d to use or to not use. Although t h i s p e r s p e c t i v e was f o r e i g n given the r e s e a r c h e r ' s s o c i a l i z a t i o n i n t o the h e a l t h care p r o f e s s i o n , i t seemed p e r f e c t l y l o g i c a l as a more f u l l understanding of the p a r t i c i p a n t s ' experience was gained. Copp (1985) developed a pain coping model and typology to encourage h e a l t h care p r o f e s s i o n a l s to look at the pain p a t i e n t i n a new way. The model was designed to help p r o f e s s i o n a l s e l i c i t data on the p a t i e n t s ' view of t h e i r p a i n , of themselves, and of t h e i r s i t u a t i o n s . The f i n d i n g s of the c u r r e n t r e s e a r c h augment the t y p o l o g i e s that Copp d e s c r i b e d . That i s , p a r t i c i p a n t s a r t i c u l a t e d coping s t r a t e g i e s that were congruent with those i n Copp's model. For example, i n d i v i d u a l s who viewed themselves as v i c t i m s saw t h e i r pain as powerful, while those who viewed themselves as f i g h t e r s viewed pain as an i n v a d e r . Thus, the f i n d i n g s of the c u r r e n t study and the i n s i g h t s o f f e r e d by Copp's model suggest that how p a t i e n t s view themselves determines to some extent how they w i l l view the p a i n . I t a l s o emphasizes the importance of an i n d i v i d u a l i z e d approach 127 to pain assessment which w i l l d i r e c t p r o f e s s i o n a l s to explore the p a t i e n t ' s p e r s p e c t i v e as part of t h e i r assessment. Several t h e o r i s t s have d e s c r i b e d methods f o r d i m i n i s h i n g the impact of cancer pain and the p a t i e n t ' s response to i t . Turk and Rennert (1981) found that l a c k of i n f o r m a t i o n about the pain o f t e n l e d to i n c r e a s e d a n x i e t y and e x a c e r b a t i o n of the p a i n . They urged p r o f e s s i o n a l s to i n t e r v e n e i n ways that would reduce emotional d i s t r e s s and would thereby d i m i n i s h the experience of p a i n . These r e s e a r c h e r s f u r t h e r s t a t e d that p a t i e n t s can gain a sense of c o n t r o l i n s i t u a t i o n s where they can a n t i c i p a t e what w i l l happen and can t h e r e f o r e u t i l i z e t h e i r own r e s o u r c e f u l coping s t r a t e g i e s . Coates (1985) w r i t e s that nursing i n t e r v e n t i o n s are needed to enhance the p a t i e n t ' s peace of mind and to thereby l e s s e n the p a i n . He groups i n t e r v e n t i o n s that d i m i n i s h the p e r c e p t i o n of pain i n t o the f o l l o w i n g c a t e g o r i e s : e x p l a n a t i o n and communication; su p p o r t i v e environment and c a r i n g a t t i t u d e s ; and f a c i l i t a t i n g the e x p r e s s i o n of f e e l i n g s . He a l s o cautions h e a l t h p r o f e s s i o n a l s that pain and the experience of pain can be augmented i f these i n t e r v e n t i o n s are not attended t o . The f i n d i n g that p a r t i c i p a n t s r e s i s t h o s p i t a l i z a t i o n f o r the purpose of keeping c o n t r o l was not r e p o r t e d by e a r l i e r r e s e a r c h e r s . This was not s u r p r i s i n g i n that most p a r t i c i p a n t s d i d not share t h e i r p e r c e p t i o n s about 128 h o s p i t a l i z a t i o n u n t i l very l a t e i n the i n t e r v i e w s . However, the r e p o r t s were h i g h l y c o n s i s t e n t with regard to p a r t i c i p a n t s not wanting to be h o s p i t a l i z e d , and f e e l i n g that they could not c o n t r o l t h e i r pain i n h o s p i t a l . Three themes were repeated i n each r e p o r t : not being able to have access to medication when i t was needed; not r e c e i v i n g the q u a n t i t y of medication that was needed; and not being able to d i s t r a c t themselves from the p a i n . In t h e i r work comparing groups of h o s p i t a l i z e d cancer p a t i e n t s with and without p a i n , Ahles and c o l l e a g u e s (1983) found that s i t u a t i o n a l or environmental v a r i a b l e s such as h o s p i t a l i z a t i o n do i n f l u e n c e p a i n , and that i n p a t i e n t s with cancer pain had e l e v a t e d a n x i e t y s c o r e s . However, these res e a r c h e r s were unable to say which f a c t o r r e l a t e d to h o s p i t a l i z a t i o n caused the r a i s e d l e v e l of an x i e t y i n cancer p a t i e n t s . Summary This chapter has d i s c u s s e d the f i n d i n g s of the c u r r e n t study i n r e l a t i o n to t h e o r e t i c a l p e r s p e c t i v e s and resea r c h f i n d i n g s as presented i n the l i t e r a t u r e . The purpose of t h i s d i s c u s s i o n was to e x p l a i n the f i n d i n g s and to l o c a t e the study w i t h i n the context of r e l a t e d r e s e a r c h . Where resear c h s t u d i e s were not a v a i l a b l e to guide the d i s c u s s i o n of f i n d i n g s i n the c u r r e n t study, t h e o r e t i c a l p e r s p e c t i v e s were used to e x p l a i n these f i n d i n g s . 129 It i s evident from the f i n d i n g s of the cur r e n t study that cancer pain has a profound impact on every aspect of the l i v e s of those who experience i t . Although the l i t e r a t u r e augments many of the study's f i n d i n g s i n r e l a t i o n to t h i s impact, i t was evident that l i t t l e was known about the experience of cancer pain from the p a t i e n t ' s p e r s p e c t i v e . I t was a l s o apparent that few s t u d i e s had approached the experience of cancer pain from a p e r s p e c t i v e that enabled in-depth e x p l o r a t i o n of the p a t i e n t ' s p e r c e p t i o n . 130 Chapter 6 SUMMARY, CONCLUSIONS, AND IMPLICATIONS FOR NURSING  Summary This study was designed to gain a b e t t e r understanding of the experience of cancer pain from the p a t i e n t ' s p e r s p e c t i v e . The m o t i v a t i o n f o r the study arose from the c o n v i c t i o n that a b e t t e r understanding of the pain experience from the p e r s p e c t i v e of the p a t i e n t would improve the q u a l i t y of care given to these p a t i e n t s . In a d d i t i o n , i t was recognized that research-based knowledge about the p a t i e n t ' s p e r s p e c t i v e on cancer pain was an e s s e n t i a l foundation f o r the p r o v i s i o n of such c a r e . The methodology that d i r e c t e d t h i s study was the phenomenological paradigm of q u a l i t a t i v e r e s e a r c h . This method u t i l i z e s an i n t e r s u b j e c t i v e approach which i n v o l v e s both the res e a r c h e r and the cancer p a t i e n t . I t allows the rese a r c h e r to enter i n t o the experience and i n t e r p r e t i t from the p a t i e n t ' s p e r s p e c t i v e . In a d d i t i o n , t h i s methodology assumes that p a r t i c i p a n t and res e a r c h e r can c o n s t r u c t and d e s c r i b e a r e a l i t y from the p a t i e n t ' s p e r s p e c t i v e with a r i c h n e s s and depth u n a t t a i n a b l e by q u a n t i t a t i v e methodologies. The l i t e r a t u r e was reviewed i n order to i d e n t i f y f i n d i n g s from previous r e s e a r c h on the experience of pain from the p e r s p e c t i v e of the cancer p a t i e n t . Because of the l i m i t e d number of rese a r c h s t u d i e s a v a i l a b l e , a review of common t h e o r e t i c a l p e r c e p t i o n s about the experience of cancer pain was a l s o i n c l u d e d . From t h i s review, and the re s e a r c h e r ' s experience, sample questions were generated to guide the i n i t i a l phase of the data c o l l e c t i o n p rocess. The data were c o l l e c t e d by means of ex t e n s i v e i n t e r v i e w s with 10 p a r t i c i p a n t s , ranging i n age from 44 to 68, each of whom was a p a t i e n t at an ambulatory pain c l i n i c i n Greater Vancouver. Interviews were audio taped. The verbatim t r a n s c r i p t i o n s of these i n t e r v i e w s , along with f i e l d notes, comprised the data f o r the study. Through a process of constant comparative a n a l y s i s , themes i d e n t i f i e d i n the data were presented to p a t i e n t s i n subsequent i n t e r v i e w s f o r v e r i f i c a t i o n and e l a b o r a t i o n . Thus, the r e s u l t s of the a n a l y t i c process were used throughout the data c o l l e c t i o n to guide and focus the c o n s t r u c t i o n of accounts. Three major themes were apparent w i t h i n the accounts. The f i r s t was a d e s c r i p t i o n of the cancer p a i n , i n which p a r t i c i p a n t s c h a r a c t e r i z e d the d i f f e r e n t types of cancer p a i n . The second theme was the d e s c r i p t i o n of the impact of cancer pain on the p h y s i c a l , s o c i a l , and emotional w e l l - b e i n g of the p a r t i c i p a n t s . The impact of the pain was explained w i t h i n the context of the coping s t r a t e g i e s p a r t i c i p a n t s used to cope with the pain and i t s impact. The t h i r d theme was a d e s c r i p t i o n of these s t r a t e g i e s . 132 The f i n d i n g s of the cur r e n t study were d i s c u s s e d i n r e l a t i o n to research f i n d i n g s and t h e o r e t i c a l p e r s p e c t i v e s as presented i n the l i t e r a t u r e . G e n e r a l l y the f i n d i n g s are congruent with the work of other r e s e a r c h e r s , and confirm what has a l r e a d y been found through other methods of r e s e a r c h . Where f i n d i n g s of the c u r r e n t study d i f f e r from e a r l i e r f i n d i n g s , the d i f f e r e n c e can u s u a l l y be a t t r i b u t e d to d i f f e r e n c e s i n the p a t i e n t groups or re s e a r c h methods. Some of the f i n d i n g s of the c u r r e n t study are not addressed i n the c u r r e n t l i t e r a t u r e , and t h e r e f o r e add to what i s c u r r e n t l y known about the experience of cancer pain from the p a t i e n t s ' p e r s p e c t i v e . Conclusions The major c o n c l u s i o n of t h i s study i s that the key to understanding the experience of cancer pain i s to be aware of the p a t i e n t ' s p e r c e p t i o n r e g a r d i n g a l l aspects of the experience. According to the p a r t i c i p a n t s i n t h i s study, the experience i s comprised of the cancer pain i t s e l f , the impact of the cancer pain on w e l l - b e i n g , and the s t r a t e g i e s used f o r coping with the pain and i t s impact. The second and r e l a t e d c o n c l u s i o n i s that p a t i e n t s i n t e r p r e t and manage t h e i r experience of cancer pain i n very unique ways and according to very i n d i v i d u a l c r i t e r i a . For example, p a r t i c i p a n t s do not take t h e i r pain medication f o r a v a r i e t y of reasons. Fear of n a r c o t i c a d d i c t i o n , of 133 e x p e r i e n c i n g side e f f e c t s of the medication, and l o s s of c o n t r o l are three concerns expressed by these p a r t i c i p a n t s . Thus understanding the d e c i s i o n s p a t i e n t s make i n r e l a t i o n to managing t h e i r pain r e q u i r e s e x p l o r i n g with the p a t i e n t the purpose f o r which these d e c i s i o n s are made. The t h i r d c o n c l u s i o n i s that i n s p i t e of the unique q u a l i t i e s of the cancer pain experience, common concerns of t h i s c l i e n t group can be i d e n t i f i e d . Common concerns i n c l u d e the impact of cancer pain on p h y s i c a l , s o c i a l , and emotional w e l l - b e i n g . P a r t i c i p a n t s a l s o share a common pe r c e p t i o n that others do not understand what i t i s l i k e to l i v e with cancer pai n , that the resources a v a i l a b l e f o r managing t h e i r pain are inadequate, and that keeping c o n t r o l over t h e i r pain and t h e i r l i v e s i s a major c h a l l e n g e . The f o u r t h c o n c l u s i o n i s that inadequate understanding by h e a l t h p r o f e s s i o n a l s i n t e r f e r e s with p a t i e n t s r e p o r t i n g t h e i r pain and seeking help i n coping with t h e i r experience. P a r t i c i p a n t s d e s c r i b e s i t u a t i o n s i n which they do not r e p o r t t h e i r pain because they p e r c e i v e that h e a l t h care p o f e s s i o n a l s do not b e l i e v e them. They d e s c r i b e w i t h h o l d i n g those parts of the experience that are so t e r r i b l e that they b e l i e v e others would not want to hear about them. The f i n a l c o n c l u s i o n i s that cancer pain i s experienced w i t h i n the context of the p a t i e n t ' s s o c i a l and c u l t u r a l environment and as such can only be understood when these v a r i a b l e s are taken i n t o account. The e f f e c t s of pain on 134 r o l e s and r e l a t i o n s h i p s s t r o n g l y i n f l u e n c e the cancer pain experience. I m p l i c a t i o n s f o r Nursing P r a c t i c e The c o n c l u s i o n s drawn from the f i n d i n g s of t h i s study have a number of i m p l i c a t i o n s f o r nursing p r a c t i c e , education, and r e s e a r c h . The major i m p l i c a t i o n f o r nursing p r a c t i c e i s that nurses need to understand a l l aspects of the pain experience from cancer p a t i e n t s ' p e r s p e c t i v e i n order to provide adequate c a r e . The c u r r e n t study i l l u s t r a t e s the importance of nurses u t i l i z i n g a framework f o r decision-making i n p r a c t i c e that r e f l e c t s a c l i e n t - c e n t e r e d f o c u s . A conceptual framework that d i r e c t s the nurse to focus on the i n d i v i d u a l c l i e n t ' s p e r c e p t i o n of the experience would g r e a t l y enhance each phase of the nursing p r o c e s s . Assessment of the p a t i e n t e x p e r i e n c i n g cancer pain would have to i n c l u d e e x p l o r a t i o n of the p a t i e n t ' s p e r c e p t i o n on a l l aspects of the experience. F i r s t , the nurse would need to e l i c i t the p a t i e n t ' s d e s c r i p t i o n of what the pain was l i k e at the time of assessment, i n c l u d i n g data on the type of p a i n , and i t s onset, i n t e n s i t y , and d u r a t i o n . Second, the nurse would need to explore with the p a t i e n t the e f f e c t s of cancer pain on h i s / h e r day-to-day l i f e . S a l i e n t questions based on the nurse's understanding of the p a t i e n t p e r s p e c t i v e of the cancer pain experience could f a c i l i t a t e 135 the process and enhance the p a t i e n t ' s f e e l i n g of being understood. An i n t e g r a l part of the assessment process must be to explore the meaning of the pain experienced by the p a t i e n t . The nurse needs to explore the p a t i e n t ' s p e r c e p t i o n of past pain experiences and knowledge about the source and meaning of the p a i n . T h i r d , i n order f o r the nurse to support the p a t i e n t i n the management of treatment, the nurse must l i s t e n to the p a t i e n t ' s d e s c r i p t i o n of the s t r a t e g i e s employed, and to the e x p l a n a t i o n of the purposes these s t r a t e g i e s serve. I t i s important f o r nurses to r e a l i z e that much of the impact of cancer pain can be expressed w i t h i n the context of the s t r a t e g i e s used to cope both with the pain and with i t s impact. Thus, one cannot f u l l y understand the p a t i e n t ' s experience of cancer pain without knowledge of the coping s t r a t e g i e s . I t i s a l s o imperative that the nurse share h i s / h e r assessment with the p a t i e n t and compare t h i s with the p a t i e n t ' s own assessment. This would f a c i l i t a t e e x p l o r a t i o n of d i f f e r e n c e s i n p e r c e p t i o n s between the nurse and the p a t i e n t when they occur, and open the door to n e g o t i a t i n g treatment s t r a t e g i e s and a b e t t e r mutual understanding of the p a t i e n t ' s experience. C o l l e c t i o n and a n a l y s i s of data i n the manner j u s t d e s c r i b e d would set the tone f o r c o l l a b o r a t i o n on what the p a t i e n t ' s p r i o r i t y problems are and how they might best be approached. These p a t i e n t s need to c o l l a b o r a t e i n the 136 planning of t h e i r c a r e . The e x p e r t i s e they have gained i n managing t h e i r own treatment i s an i n v a l u a b l e source of data. Most p a t i e n t s want to manage and provide t h e i r own care as much as p o s s i b l e . This f i n d i n g c h a l l e n g e s the nurse to be c r e a t i v e i n g i v i n g p a t i e n t s l e g i t i m a t e c o n t r o l over t h e i r treatment wherever p o s s i b l e , and to act as an advocate fo r p a t i e n t s who seek more c o n t r o l over t h e i r own ca r e . Nursing i n t e r v e n t i o n s are needed that d i m i n i s h the p a t i e n t ' s p e r c e p t i o n of p a i n . S t r a t e g i e s such as a l l o w i n g the p a t i e n t to t a l k about h i s / h e r experience, f a c i l i t a t i n g the e x p r e s s i o n of f e e l i n g s , and h e l p i n g the p a t i e n t to gain a sense of c o n t r o l w i l l reduce emotional d i s t r e s s and thereby reduce the experience of p a i n . In s i t u a t i o n s where p a t i e n t s can a n t i c i p a t e what w i l l happen and u t i l i z e t h e i r own r e s o u r c e f u l coping s t r a t e g i e s , e x a c e r b a t i o n of pain i s l e s s l i k e l y to occur. Circumstances known to i n c r e a s e d i s t r e s s l e v e l s and t h e r e f o r e pain p e r c e p t i o n , such as f e e l i n g they are not heard or b e l i e v e d when they t a l k about t h e i r p a i n , a l s o need to be co n s i d e r e d . Furthermore, nurses must be aware of the need f o r p a t i e n t advocacy i n the h e a l t h care system. I m p l i c a t i o n s f o r Nursing Education Students need to be encouraged to c r i t i c a l l y analyze what they observe i n p r a c t i c e . I t was the re s e a r c h e r ' s students that o r i g i n a l l y asked the quest i o n which u l t i m a t e l y 137 provided the impetus f o r t h i s study. C r i t i c a l a n a l y s i s of what i s observed i n p r a c t i c e and of the f i n d i n g s of other r e s e a r c h e r s i s a s k i l l that must be nurtured i n students. Nurse educators need to provide students not only with knowledge of the cancer pain experience, but a l s o with s t r a t e g i e s to explore the p a t i e n t s ' p e r s p e c t i v e of the experience. A p p l i c a t i o n of these s t r a t e g i e s i n c l i n i c a l p r a c t i c e would enable students to access one of the most v i t a l sources of knowledge and understanding of the i l l n e s s experience p r e s e n t l y a v a i l a b l e to nurses, the p a t i e n t e x p e r i e n c i n g the i l l n e s s . As has been mentioned i n the previous d i s c u s s i o n , c l i e n t - c e n t e r e d conceptual frameworks f a c i l i t a t e the type decision-making that i s condusive to c a r i n g f o r cancer p a t i e n t s e x p e r i e n c i n g p a i n . Such conceptual frameworks should a l s o form the b a s i s f o r c u r r i c u l a i n nursing education programs. In t h i s way, the graduates of the f u t u r e w i l l be o r i e n t e d toward the c l i e n t ' s experience as the focus of n u r s i n g c a r e . I m p l i c a t i o n s f o r Nursing Research Se v e r a l f i n d i n g s i n the c u r r e n t study r a i s e questions that can only be answered by f u r t h e r r e s e a r c h and, i n some cases, by a d i f f e r e n t type of r e s e a r c h . F i r s t , i t would be u s e f u l to conduct the i d e n t i c a l study on a group of cancer p a t i e n t s e x p e r i e n c i n g p a i n , but who were not a s s o c i a t e d with 138 a p a i n c l i n i c . S e c ond, i t would be u s e f u l to d e v e l o p a q u e s t i o n n a i r e based on t h e d a t a from t h i s s t u d y and to a d m i n i s t e r i t to a l a r g e r group o f c a n c e r p a t i e n t s who were e x p e r i e n c i n g p a i n . Such a s t u d y would seek c o n f i r m a t i o n of the g e n e r a l i z a b i l i t y of i s s u e s r a i s e d by t h e c u r r e n t s t u d y . T h i r d , i t would be u s e f u l to compare p a t i e n t s ' p e r c e p t i o n s of the p a i n e x p e r i e n c e i n t h e h o s p i t a l and a t home, and t o e x p l o r e i s s u e s r a i s e d i n t h i s s t u d y i n r e l a t i o n to h o s p i t a l i z a t i o n . F o r example, i s the i n a b i l i t y to r e g u l a t e a c c e s s to p a i n m e d i c a t i o n i n h o s p i t a l t h e main r e a s o n f o r h i g h d i s t r e s s l e v e l s i n t h e s e p a t i e n t s ? Some u n i t s now have l o c k e d b e d s i d e u n i t s f o r p a t i e n t s to c o n t r o l t h e i r own a d m i n i s t r a t i o n of n a r c o t i c m e d i c a t i o n . A s t u d y on s u c h a p a t i e n t group might p r o v i d e s u p p o r t f o r t h i s s t r a t e g y as w e l l as i n s i g h t s on o t h e r s o u r c e s of d i s t r e s s i n t h e s e p a t i e n t s . F o u r t h , a s t u d y s i m i l a r to t h e p r e s e n t one, i n w h i c h the p a t i e n t s ' p e r c e p t i o n s of the p a i n e x p e r i e n c e were sou g h t from p a t i e n t s w i t h n o n - m a l i g n a n t p a i n , and c o m p a r i s o n s made w i t h a gro u p of p a t i e n t s w i t h m a l i g n a n t p a i n , would a l s o add v a l u a b l e i n s i g h t s to n u r s i n g knowledge on the r o l e of the c o g n i t i v e and a f f e c t i v e components of c a n c e r p a i n . More s t u d i e s a r e needed w h i c h h i g h l i g h t the d i f f e r e n c e s between the p a t i e n t s ' p e r c e p t i o n s of t h e i r p a i n e x p e r i e n c e and t h o s e h e l d by the n u r s e s who c a r e f o r them. F o r example, i t would be u s e f u l t o e x p l o r e n u r s e s ' p e r c e p t i o n s 139 of what the p a t i e n t s ' e x p e r i e n c e of c a n c e r p a i n i s l i k e and to compare and c o n t r a s t p e r c e p t i o n s of the p a t i e n t and n u r s e g r o u p s on what the e x p e r i e n c e i s l i k e . Such d a t a would be i n v a l u a b l e i n the q u e s t to g a i n a more c o m p l e t e u n d e r s t a n d i n g of the e x p e r i e n c e . One f i n a l c o n c e r n r e q u i r i n g f u r t h e r s t u d y i s t h e i m p a c t of c a n c e r p a i n on human r e l a t i o n s h i p s . F u r t h e r m o r e , we need s t u d i e s w h i c h e x p l o r e the i m p a c t of c a n c e r p a i n on t h e f a m i l y o f the c a n c e r p a t i e n t . Such knowledge c o u l d r e d u c e the a n x i e t y , and i n some c a s e s i s o l a t i o n , t h a t some p a t i e n t s e x p e r i e n c e . In c o n c l u s i o n , t h e f i n d i n g s of t h i s s t u d y s u g g e s t t h a t the e x p e r i e n c e of c a n c e r p a i n from the p a t i e n t ' s p e r s p e c t i v e i s an a r e a i n w h i c h more r e s e a r c h i s needed i n o r d e r t o improve th e q u a l i t y of c a r e t h e s e p a t i e n t s r e c e i v e . T h i s s t u d y has c l e a r l y shown t h a t p r e s e n t knowledge of t h e e x p e r i e n c e of c a n c e r p a i n from the p a t i e n t ' s p e r s p e c t i v e i s i n a d e q u a t e f o r the p r o v i s i o n of h o l i s t i c c a r e . F u r t h e r m o r e , 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 t h a t , t h e p a t i e n t s e x p e r i e n c i n g c a n c e r p a i n a r e the most v a l u a b l e s o u r c e o f t h e knowledge and u n d e r s t a n d i n g t h a t h e a l t h p r o f e s s i o n a l s need to p r o v i d e h o l i s t i c c a r e to t h e s e p a t i e n t s . 140 R e f e r e n c e s Abu-Saad, H. & T e s s l e r , M. ( 1 9 8 6 ) . P a i n . I n V. C a r r i e r i , A. L i n d s e y , & C. West ( E d s . ) , P a t h o p h y s i o l o g i c a l phenomena i n n u r s i n g ( p p . 235-269). T o r o n t o : S a u n d e r s . A i r s t a r s , J . ( 1 9 8 7 ) . F a t i g u e i n the c a n c e r p a t i e n t : A c o n c e p t u a l a p p r o a c h to a c l i n i c a l p r o b l e m . O n c o l o g y  N u r s i n g Forum, 1 4 / 6 ) , 25-30. A h l e s , T., B l a n c h a r d , E., & R u c k d e s c h e l , J . ( 1 9 8 3 ) . The m u l t i - d i m e n s i o n a l n a t u r e of c a n c e r - r e l a t e d p a i n . P a i n , 17, 277-288. A n d e r s o n , J . L. ( 1 9 8 2 ) . N u r s i n g management of t h e c a n c e r p a t i e n t i n p a i n : A r e v i e w o f the l i t e r a t u r e . C a n c e r N u r s i n g , _5 , 33-39 . A n d e r s o n , J . M. ( 1 9 8 5 ) . H e a l t h of i m m i g r a n t women. Advances i n N u r s i n g S c i e n c e , 61-66. A u s t i n , C , E y r e s , P., H e f f e r i n , E., & Krasnow, R. ( 1 9 8 6 ) . H o s p i c e home c a r e p a i n management: F o u r c r i t i c a l v a r i a b l e s . C a n c e r N u r s i n g , 9_, 58-65 . B a l d o n a d o , A. A., & S t a h l , D. A. ( 1 9 8 2 ) . C a n c e r n u r s i n g : A h o l i s t i c m u l t i d i s c i p l i n a r y a p p r o a c h . New Y o r k : M e d i c a l E d u c a t i o n . B e a l e s , J . G. ( 1 9 8 6 ) . C o g n i t i v e d e v e l o p m e n t and the e x p e r i e n c e o f p a i n . In S. 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Cancer, 52 , 341-345 . Starck, D. (1982). Report to the c l i n i c a l p r a c t i c e  committee on pain [ c a s s e t t e ] . St. L o u i s : 7th Annual Oncology Nursing S o c i e t y Congress. Sternsward, J . , & Ozorio, P. (1985). Why not "Freedom from cancer pain?" World Health, 6, 23-25 . Sternbach, R. (1974). Pain p a t i e n t s : T r a i t s and treatment. New York: Academic Press. 145 Thorne, S. (1985). The f a m i l y cancer experience. Cancer Nursing, 8, 285-291 . Turk, D., & Kerns, R. D. (1983). Conceptual i s s u e s i n the assessment of c l i n i c a l p a i n . I n t e r n a t i o n a l J o u r n a l of  P s y c h i a t r y i n Medicine, ^ ( 1 ) , 57-67. Turk, D., & Rennert, K. (1981). Pain and the t e r m i n a l l y i l l cancer p a t i e n t : A c o g n i t i v e - s o c i a l l e a r n i n g p e r s p e c t i v e . In H. Sobel (Ed.), B e h a v i o r a l therapy i n  t e r m i n a l c a r e: A humanistic approach. Cambridge: B a l l i n g e r . T u t t l e , B. (1985). Drug management of pain i n cancer p a t i e n t s . Canadian Medical A s s o c i a t i o n J o u r n a l , 132, 121-134 . Twycross, R., & Lack, S. (1983). Symptom c o n t r o l i n f a r  advanced cancer: Pain r e l i e f . London: Pitman. Wall, P. (1979). On the r e l a t i o n of i n j u r y to p a i n . The John J . Bonica l e c t u r e . Pain, 6, 253-264. 146 A p p e n d i x A L e t t e r of I n f o r m a t i o n and C o n s e n t My name i s M a r j o r i e M c l n t y r e , I am a r e g i s t e r e d n u r s e and a s t u d e n t i n the M a s t e r of S c i e n c e i n N u r s i n g program a t UBC. I am i n t e r e s t e d i n e x p l o r i n g what i t i s l i k e f o r p e o p l e who have p a i n a s s o c i a t e d w i t h c a n c e r and am l o o k i n g f o r p e o p l e w i l l i n g to be i n t e r v i e w e d . You have been s u g g e s t e d as someone who c o u l d make a v a l u a b l e c o n t r i b u t i o n to t h i s s t u d y . I f you a r e i n t e r e s t e d and would l i k e to p a r t i c i p a t e , i t would i n v o l v e two, or p o s s i b l y t h r e e i n t e r v i e w s w i t h m y s e l f of a p p r o x i m a t e l y one hour e a c h . I n t e r v i e w s would be t a p e r e c o r d e d ( w i t h y o u r p e r m i s s i o n ) to a s s i s t i n r e p o r t w r i t i n g . In t h e i n t e r v i e w you would be a s k e d q u e s t i o n s about t h e p a i n you have e x p e r i e n c e d and how t h i s p a i n has a f f e c t e d y o u r d a y - t o - d a y l i f e . I would l i k e to know what has h e l p e d and what h a s n ' t h e l p e d i n r e l i e v i n g y o u r p a i n . I t i s my b e l i e f t h a t i n u n d e r s t a n d i n g c a n c e r p a i n from the p a t i e n t ' s p o i n t of v i e w , n u r s e s w i l l be b e t t e r p r e p a r e d to work e f f e c t i v e l y w i t h p a t i e n t s i n c o n t r o l l i n g t h e i r p a i n . I n my e x p e r i e n c e as a s t a f f n u r s e and as an i n s t r u c t o r o f n u r s i n g s t u d e n t s w o r k i n g w i t h c a n c e r p a t i e n t s , I have r e a l i z e d t h a t p a i n i s a s i g n i f i c a n t p a r t of t h e e x p e r i e n c e w i t h c a n c e r . T h i s r e a l i z a t i o n has l e d t o the d e v e l o p m e n t of t h e p r e s e n t s t u d y . A l t h o u g h t h e r e may be no d i r e c t b e n e f i t to you i n p a r t i c i p a t i n g , many p e o p l e f i n d i t h e l p f u l t o t a l k o v e r t h e i r c o n c e r n s w i t h a h e a l t h p r o f e s s i o n a l . F u r t h e r , i t i s hoped t h a t y o u r i n s i g h t s w i l l i n c r e a s e our u n d e r s t a n d i n g o f t h e e x p e r i e n c e and u l t i m a t e l y the c a r e g i v e n to c a n c e r p a t i e n t s . I f you have any q u e s t i o n s now or a t any t i m e d u r i n g the s t u d y you a r e f r e e to phone me a t the number p r o v i d e d . To m a i n t a i n c o n f i d e n t i a l i t y and a n o n y m i t y t a p e s , d i s c s and w r i t t e n r e p o r t s w i l l c o n t a i n no names or i d e n t i f y i n g c h a r a c t e r i s t i c s and t a p e s w i l l be e r a s e d once r e p o r t w r i t i n g i s c o m p l e t e . No one w i l l have a c c e s s to t h i s m a t e r i a l e x c e p t m y s e l f and two r e s e a r c h a d v i s o r s . 147 P a r t i c i p a t i o n i n t h e s t u d y i s v o l u n t a r y and you may choose not to p a r t i c i p a t e i f you w i s h . I f you do a g r e e to p a r t i c i p a t e , you may w i t h d r a w from the s t u d y or r e f u s e to answer q u e s t i o n s a t any t i m e w i t h o u t any e f f e c t on p r e s e n t or f u t u r e c a r e . Y o u r s s i n c e r e l y , M a r j o r i e M c l n t y r e . UBC S c h o o l of N u r s i n g Phone By s i g n i n g t h i s c o n s e n t form I i n d i c a t e t h a t I have r e c e i v e d and r e a d t h e i n f o r m a t i o n l e t t e r and have had q u e s t i o n s answered to my s a t i s f a c t i o n . I a g r e e to p a r t i c i p a t e i n the s t u d y . S i g n a t u r e Date W i t n e s s 148 Appendix B Sample Questions f o r I n i t i a l Interview I am i n t e r e s t e d i n l e a r n i n g about the pain people experience when they have cancer. What i s i t l i k e f o r you? How would you d e s c r i b e your pain? I n t e n s i t y D u ration What do you thin k about when you are having pain? What f e e l i n g s do you a s s o c i a t e with your pain? How i s t h i s d i f f e r e n t from your "usual s e l f " ? What makes the s i t u a t i o n worse or b e t t e r when you are having pain? How does having t h i s pain a f f e c t your l i f e ? Are things d i f f e r e n t now than before? How are they d i f f e r e n t ? How does i t a f f e c t your family? What suggestions, i f any, do you have f o r nurses or others who work with p a t i e n t s e x p e r i e n c i n g cancer pain? What suggestions, i f any do you have f o r p a t i e n t s and t h e i r f a m i l i e s who are faced with cancer pain? 

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