UBC Theses and Dissertations

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UBC Theses and Dissertations

Preferences for intervention among cancer patients receiving radiotherapy for the first time Salton, Christine Ann 1986

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PREFERENCES FOR INTERVENTION AMONG CANCER PATIENTS RECEIVING RADIOTHERAPY FOR THE FIRST TIME By C h r i s t i n e Ann S a l t o n A., The U n i v e r s i t y o f B r i t i s h C o l u m b i a , 1977 THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING i n THE FACULTY OF GRADUATE STUDIES S c h o o l o f N u r s i n g We a c c e p t t h i s t h e s i s a s c o n f o r m i n g t o t h e r e q u i r e d s t a n d a r d THE UNIVERSITY OF BRITISH COLUMBIA Ju n e 1986 (&) C h r i s t i n e Ann S a l t o n , 1986 In presenting t h i s thesis i n p a r t i a l f u l f i l m e n t of the requirements for an advanced degree at the University of B r i t i s h Columbia, I agree that the Library s h a l l make i t f r e e l y available for reference and study. I further agree that permission for extensive copying of t h i s thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. I t i s understood that copying or publication of t h i s thesis for f i n a n c i a l gain s h a l l not be allowed without my written permission. Department of JflLjAAt^  The University of B r i t i s h Columbia 1956 Main Mall Vancouver, Canada V6T 1Y3 DE-6 (3/81) ABSTRACT T h i s e x p l o r a t o r y , d e s c r i p t i v e s t u d y was d e s i g n e d t o d e s c r i b e h e a l t h c a r e p r e f e r e n c e s among c a n c e r p a t i e n t s r e c e i v i n g r a d i o t h e r a p y f o r t h e f i r s t t i m e . I n a d d i t i o n , t h e r e l a t i o n s h i p between s e l e c t e d d e m o g r a p h i c v a r i a b l e s and p a t i e n t s ' h e a l t h c a r e p r e f e r e n c e s was examined a s was t h e r e l a t i o n s h i p between p a t i e n t s ' a n x i e t y and t h e i r h e a l t h c a r e p r e f e r e n c e s . A c o n v e n i e n c e s a mple o f f o r t y n e w l y - d i a g n o s e d c a n c e r p a t i e n t s was s e l e c t e d f r o m t h e p o p u l a t i o n o f p a t i e n t s r e c e i v i n g r a d i o t h e r a p y a t a l a r g e u r b a n c a n c e r t r e a t m e n t f a c i l i t y . The sample i n c l u d e d 21 women and 19 men r a n g i n g i n age f r o m 36 t o 79 y e a r s . From m e d i c a l r e c o r d s , t h e r e s e a r c h e r c o l l e c t e d r e l e v a n t d e m o g r a p h i c i n f o r m a t i o n . P a t i e n t s c o m p l e t e d t h e H e a l t h C a r e P r e f e r e n c e S u r v e y , a s e v e n - i t e m f o r c e d - c h o i c e q u e s t i o n n a i r e . E a c h i t e m p r e s e n t e d a c l i n i c a l s i t u a t i o n and o f f e r e d a c h o i c e between a c o g n i t i v e o r an a f f e c t i v e n u r s i n g i n t e r v e n t i o n . A n x i e t y was measured by t h e s u b j e c t s ' r e s p o n s e s t o t h e S t a t e - T r a i t A n x i e t y I n v e n t o r y ( S T A I ) . In most s i t u a t i o n s , p a t i e n t s p r e f e r r e d c o g n i t i v e o v e r a f f e c t i v e i n t e r v e n t i o n s and t h e p r e f e r e n c e f o r c o g n i t i v e i n t e r v e n t i o n s was l a r g e l y i n d e p e n d e n t o f d e m o g r a p h i c v a r i a b l e s . C l i n i c a l s i t u a t i o n and t i m i n g may have a f f e c t e d i n t e r v e n t i o n p r e f e r e n c e . P a t i e n t s ' a n x i e t y l e v e l s s i g n i f i c a n t l y a f f e c t e d t h e i r p r e f e r e n c e s f o r h e a l t h c a r e i n t e r v e n t i o n s . P a t i e n t s who had h i g h S t a t e a n x i e t y s c o r e s p r e f e r r e d a f f e c t i v e r a t h e r t h a n c o g n i t i v e i n t e r v e n t i o n s . I n c i d e n t a l f i n d i n g s i n c l u d e d s u b j e c t s ' comments a b o u t p a r t i c i p a t i o n i n t h e s t u d y and a t t i t u d e s t o w a r d t h e i r i l l n e s s e x p e r i e n c e s and o b t a i n i n g i n f o r m a t i o n . I m p l i c a t i o n s f o r n u r s i n g p r a c t i c e and recommendatons f o r f u r t h e r r e s e a r c h a r e d i s c u s s e d . i i i TABLE OF CONTENTS A b s t r a c t i i T a b l e o f C o n t e n t s i v L i s t o f T a b l e s v i i Acknowledgements v i i i C h a p t e r 1: INTRODUCTION O v e r v i e w 1 B a c k g r o u n d and S i g n i f i c a n c e 2 P r o b l e m 5 P u r p o s e s 6 D e f i n i t i o n o f Terms 6 A s s u m p t i o n s and L i m i t a t i o n s 8 C h a p t e r 2: REVIEW OF RELEVANT LITERATURE I n t r o d u c t i o n 9 C o g n i t i v e I n t e r v e n t i o n s : P a t i e n t E d u c a t i o n .... 11 A f f e c t i v e I n t e r v e n t i o n s : E m o t i o n a l S u p p o r t . . . . 16 P a t i e n t P r e f e r e n c e s f o r H e a l t h C a r e I n t e r v e n t i o n 19 A n x i e t y 24 E f f e c t s o f a n x i e t y 27 Measurement o f a n x i e t y 28 Summary 29 C h a p t e r 3: METHODOLOGY I n t r o d u c t i o n 31 I n s t r u m e n t s and I n s t r u m e n t D e v e l o p m e n t 31 Demo g r a p h i c q u e s t i o n n a i r e 31 H e a l t h C a r e P r e f e r e n c e S u r v e y 32 S t a t e - T r a i t A n x i e t y I n v e n t o r y 33 S e t t i n g 34 S u b j e c t s 35 Human R i g h t s and E t h i c s 36 Data C o l l e c t i o n 37 D a t a A n a l y s i s 38 C h a p t e r 4: PRESENTATION AND DISCUSSION OF RESULTS I n t r o d u c t i o n 41 S e c t i o n 1. The Sample 41 Age and s e x 42 M a r i t a l s t a t u s 42 E d u c a t i o n a l l e v e l s 42 E t h n i c i t y 44 i v O c c u p a t i o n 44 Home r e g i o n 45 P e r f o r m a n c e s t a t u s 45 D i s e a s e s i t e 46 Number o f t r e a t m e n t s 47 N a t u r e o f t r e a t m e n t 47 The sample and o t h e r p o p u l a t i o n s 48 S e c t i o n 2. The H e a l t h C a r e P r e f e r e n c e S u r v e y . . 4 9 R e s p o n s e s t o t h e HCPS 49 C o n c u r r e n t v a l i d i t y 56 S e c t i o n 3. The HCPS and Dem o g r a p h i c V a r i a b l e s . 5 7 Age 57 Sex 58 M a r i t a l s t a t u s 59 E d u c a t i o n 59 E t h n i c o r i g i n 59 O c c u p a t i o n . .60 Home r e g i o n 61 P e r f o r m a n c e s t a t u s 61 D i s e a s e s i t e 62 Number o f t r e a t m e n t s 62 P r i m a r y o r a d j u v a n t t r e a t m e n t 62 S e c t i o n 4. HCPS S c o r e s and STAI S c o r e s 63 C o r r e l a t i o n s between S - A n x i e t y and T - A n x i e t y s c a l e s 66 HCPS s c o r e s and S t a t e a n x i e t y s c o r e s 66 HCPS s c o r e s and T r a i t a n x i e t y s c o r e s 67 S e c t i o n 5. O t h e r F i n d i n g s 68 I n t r o d u c t i o n 68 A t t i t u d e s o f s u b j e c t s 69 Comments a b o u t t h e q u e s t i o n n a i r e s 70 Comments a b o u t i n f o r m a t i o n 71 Comments a b o u t i n f o r m a t i o n and s e n s o r y p r o b l e m s 72 Summary 73 C h a p t e r 5: SUMMARY, CONCLUSIONS, IMPLICATIONS AND RECOMMENDATIONS Summary 77 C o n c l u s i o n s 82 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 83 Recommendations f o r F u r t h e r S t u d y 85 BIBLIOGRAPHY 87 v APPENDICES A p p e n d i x A. D e m o g r a p h i c Q u e s t i o n n a i r e and B a c k g r o u n d I n f o r m a t i o n 97 A p p e n d i x B. H e a l t h C a r e P r e f e r e n c e S u r v e y 100 A p p e n d i x C. L e t t e r o f I n t r o d u c t i o n 107 A p p e n d i x D. P a t i e n t I n f o r m a t i o n S h e e t 110 v i L I S T OF TABLES T a b l e Page I . D i s t r i b u t i o n o f S u b j e c t s by Age and Sex 43 I I . M a r i t a l S t a t u s 43 I I I . E d u c a t i o n a l L e v e l s 44 IV. O c c u p a t i o n 45 V. P e r f o r m a n c e S t a t u s 46 V I . D i s e a s e S i t e s 47 V I I . Number o f R a d i o t h e r a p y T r e a t m e n t s 48 V I I I . I n t e r v e n t i o n C h o i c e s on t h e H e a l t h C a r e P r e f e r e n c e S u r v e y f o r I n d i v i d u a l Items..50 IX. D i f f e r e n c e s Between Items 52 X. C o n t e n t o f HCPS Items w i t h R e s p o n s e s . . . . 54 X I . C o n c u r r e n t V a l i d i t y Q u e s t i o n 56 X I I . S t a t e S c o r e s 63 X I I I . T r a i t S c o r e s 64 v i i ACKNOWLEDGEMENTS I would l i k e t o t h a n k Nod M i r h a d y , who s u p p o r t e d t h i s t h e s i s i n i n n u m e r a b l e ways and w i t h o u t whose h e l p i t would n e v e r have been c o m p l e t e d . He gave u n s t i n t i n g l y o f h i s t i m e , e n e r g y , s l e e p and l o v e t o s e e a dream f u l f i l l e d . F o r t h e i r e f f o r t s i n g u i d i n g me t h r o u g h t h e r e s e a r c h p r o c e s s , I am i n d e b t e d t o Dr. M. W i l l m a n , B a r b a r a Warren, Sue R o t h w e l l and B e t t y J o h n s o n . I would l i k e t o t h a n k Dr W i l l m a n f o r h e r i n s i g h t f u l comments and f o r a c c e p t i n g t h e d i f f i c u l t t a s k o f c h a i r i n g my t h e s i s c o m m i t t e e i n m i d - s t r e a m . B a r b a r a Warren's e n t h u s i a s m , c r i t i c a l comments and u n f l a g g i n g s u p p o r t o f my t h e s i s o v e r t h e l a s t f i v e y e a r s w i l l l o n g be remembered w i t h g r a t i t u d e . I would a l s o l i k e t o t h a n k Dr. J a c k s o n , t h e r a d i o t h e r a p y s t a f f a t t h e C a n c e r C o n t r o l Agency o f B.C., and t h e p a t i e n t s who p a r t i c i p a t e d and gave s o g e n e r o u s l y o f t h e i r t i m e t o make t h i s s t u d y p o s s i b l e . v i i i CHAPTER 1 INTRODUCTION O v e r v i e w The d i a g n o s i s and t r e a t m e n t o f c a n c e r a r e g e n e r a l l y a c k n o w l e d g e d t o be s t r e s s f u l p s y c h o s o c i a l e x p e r i e n c e s f o r p a t i e n t s . F e a r , a n x i e t y and e m o t i o n a l d i s t r e s s a r e o f t e n t h e c o n s e q u e n c e s o f t h e p u b l i c p e r c e p t i o n o f c a n c e r a s a l i f e - t h r e a t e n i n g i l l n e s s . Over and above t h e e m o t i o n a l t h r e a t s p o s e d by t h e d i s e a s e i t s e l f a r e t h e o f t e n e q u a l l y p o t e n t t h r e a t s p o s e d by t h e d i a g n o s t i c p r o c e d u r e s , s u r g e r y and c h e m o t h e r a p y o r r a d i o t h e r a p y . H e a l t h c a r e w o r k e r s have a c h o i c e o f i n t e r v e n t i o n s f o r d e a l i n g w i t h t h e p s y c h o s o c i a l p r o b l e m s o f c a n c e r p a t i e n t s . F o r t h e p u r p o s e s o f t h i s s t u d y , t h e s e have been p l a c e d i n two c a t e g o r i e s , a f f e c t i v e and c o g n i t i v e . The p r i m a r y g o a l o f a f f e c t i v e i n t e r v e n t i o n s i s t h e a m e l i o r a t i o n o f t h e e m o t i o n a l d i s t r e s s w h i c h u s u a l l y a c c o m p a n i e s t h e d i a g n o s i s and t r e a t m e n t o f c a n c e r . The p r i m a r y o b j e c t i v e o f c o g n i t i v e i n t e r v e n t i o n s , on t h e o t h e r hand, i s t o a s s i s t p a t i e n t s t o u n d e r s t a n d and c o p e w i t h t h e m u l t i p l e , complex and u n f a m i l i a r p r o c e d u r e s i n v o l v e d i n t h e t r e a t m e n t o f c a n c e r . A l t h o u g h n o t t h e p r i m a r y aim, t h e l a t t e r may a l s o s e r v e t o a m e l i o r a t e e m o t i o n a l d i s t r e s s . G i v e n l i m i t e d r e s o u r c e s o f t i m e , e n e r g y and m a t e r i e l , t h e h e a l t h c a r e w o r k e r o f t e n f a c e s a c h o i c e between p u t t i n g e f f o r t i n t o a f f e c t i v e o r 1 c o g n i t i v e i n t e r v e n t i o n s . The l i t e r a t u r e does not pr o v i d e much guidance f o r d e l i v e r i n g a p p r o p r i a t e , t i m e l y and e f f e c t i v e i n t e r v e n t i o n s . L i k e w i s e , t h e r e i s l i t t l e l i t e r a t u r e on which type o f h e a l t h care i n t e r v e n t i o n p a t i e n t s themselves p r e f e r . Background and S i g n i f i c a n c e A survey i n the USA noted t h a t people ranked the f e a r of cancer h i g h e r than the t h r e a t o f a n u c l e a r h o l o c a u s t or v i o l e n t crimes (Cantor, 1978). The d i a g n o s i s of cancer evokes many powerful emotions and i s g e n e r a l l y acknowledged t o be a very a n x i e t y - p r o v o k i n g experience ( G u l l o , C h e r i c o _ Shadick, 1974; V e t t e s e , 1976; Blumberg, F l a h e r t y & Lewis, 1980). Cantor'<1978) d e s c r i b e s the a n x i e t y response as one of the most d i s r u p t i v e o f the emotional r e a c t i o n s t o cancer. The a n x i e t y evoked by the d i s e a s e can become the primary experience o f the d i s e a s e . When t h i s happens, a n x i e t y has not prepared us f o r a c t i o n , i t has produced an apprehensive s e l f - a b s o r p t i o n t h a t obscures the very nature of what t h r e a t e n s us. (p. 19) However, i t i s not j u s t the d i s e a s e which b r i n g s on a n x i e t y . Bond (1982) found t h a t p a t i e n t s had s i g n i f i c a n t l e v e l s of a n x i e t y and d e p r e s s i o n as a r e s u l t o f having r a d i o t h e r a p y as the primary mode of treatment. Over 50*s of cancer p a t i e n t s w i l l r e c e i v e r a d i o t h e r -apy a t some p o i n t i n t h e i r i l l n e s s (Sarna, 1981). A consensus e x i s t s among h e a l t h c a r e workers t h a t these p a t i e n t s should be gi v e n some form o f p r e p a r a t o r y 2 i n f o r m a t i o n (Creech, 1975; Peck & Boland, 1977; Johnson & F l a h e r t y , 1980; B a t t l e s , 1981; Bouchard-Kurtz & Speese-Owen, 1981; C a s s i l e t h , Heiberger, March & Sutton-Smith, 1982). T h i s i n f o r m a t i o n may take many forms, but has the o v e r a l l goal o f h e l p i n g the p a t i e n t t o e f f e c t -i v e l y cope with the d i s e a s e and treatment experience. Before a course o f treatment begins, h e a l t h care workers are l e g a l l y bound t o meet requirements o f informed consent, namely the complete and reasonable d i s c l o s u r e o f p o t e n t i a l r i s k s , b e n e f i t s and s i d e e f f e c t s of the proposed treatment (Rozovsky, 1979; Magnet-Rogers, 1980; O'Connor, 1981; S t o r c h , 1982). During the course of r a d i o t h e r a p y , a d d i t i o n a l i n f o r m a t i o n should be presented t o enable the p a t i e n t and h i s f a m i l y t o e f f e c t i v e l y manage the p r e d i c t a b l e s i d e e f f e c t s o f treatment which can occur when the p a t i e n t r e t u r n s home (Webb, 1979). A l l o f t h i s i n f o r m a t i o n must be c a r e f u l l y t a i l o r e d t o the needs and a b i l i t i e s of p a t i e n t s t o comprehend i t (Bahnson, 1975). Information they are give n may not correspond with what they want or need. Lauer, Murphy, and Powers (1981) noted t h a t p a t i e n t s and h e a l t h c a r e workers d i f f e r s i g n i f i c a n t l y i n p e r c e p t i o n s of l e a r n i n g needs and of what c o n s t i t u t e s important i n f o r m a t i o n . 3 S e v e r a l authors have observed t h a t a n x i e t y from whatever source i n t e r f e r e s with l e a r n i n g new i n f o r m a t i o n ( I z a r d & Tompkins, 1966; Lader & Marks, 1971; P o h l , 1978). I t i s not s u r p r i s i n g , t h e r e f o r e , t h a t r e c e n t r e s e a r c h has documented t h a t cancer p a t i e n t s , i n p a r t i c u l a r , r e t a i n l i t t l e o f the i n f o r m a t i o n t h a t i s imparted to them (Dodd, 1982a; Dodd & Mood, 1981; I s r a e l & Mood, 1982; Mcintosh, 1974). Cancer poses t h r e a t s t o a p a t i e n t ' s b i o l o g i c a l , p s y c h o l o g i c a l and s o c i a l i n t e g r i t y . I t i s t o cope with the l a s t two of these t h r e a t s t h a t many of the same authors who promote the p r o v i s i o n of p r e p a r a t o r y i n f o r m a t i o n , Bahnson (1975) and Creech (1975) i n p a r t i c u l a r , a l s o recommend the p r o v i s i o n of emotional support t o cancer p a t i e n t s . A f f e c t i v e h e a l t h care i n t e r v e n t i o n s have two b e n e f i t s f o r cancer p a t i e n t s . The f i r s t and most d i r e c t e f f e c t i s t o help the p a t i e n t f e e l more comfortable, l e s s anxious and l e a s e m o t i o n a l l y d i s t r e s s e d . The second, co n c u r r e n t e f f e c t i s t o help c r e a t e the emotional c o n d i t i o n s i n which l e a r n i n g can best take p l a c e . A f f e c t i v e i n t e r v e n t i o n s may i n c l u d e l i s t e n i n g , encouraging the v e n t i l a t i o n of f e e l i n g s , i d e n t i f y i n g f e a r s and concerns, t e a c h i n g s t r e s s reduct-ion or r e l a x a t i o n techniques and t a l k i n g about o u t s i d e a s p e c t s of a p a t i e n t ' s l i f e (Gordon, Fried e n b e r g s , 4 D i l l e r , Hibbard, Wolf, L e v i n s , L i p k i n s , E z r a c h i & Lucido, 1980). Thus, h e a l t h care p r a c t i t i o n e r s are f a c e d with a dilemma. Are they t o fo c u s t h e i r e f f o r t s on c o g n i t i v e i n t e r v e n t i o n s or a f f e c t i v e i n t e r v e n t i o n s , or both? Much of the l i t e r a t u r e , as w i l l be seen i n Chapter 2, recom-mends a comprehensive i n t e r v e n t i o n program t o address p s y c h o s o c i a l problems, but does l i t t l e t o i d e n t i f y p a t i e n t s a t g r e a t e s t r i s k or i n g r e a t e s t need of the d i f f e r e n t k i n d s o f i n t e r v e n t i o n . Does the c h r o n o l o g i c a l order o f the types of i n t e r v e n t i o n make a d i f f e r e n c e ? There are recommendations f o r a f f e c t i v e i n t e r v e n t i o n s (emotional support) b e f o r e i n f o r m a t i o n i s pr o v i d e d , but the o p p o s i t e recommendation i s a l s o made. Furthermore, l i t e r a t u r e concerning p a t i e n t p r e f e r e n c e s p r o v i d e s very l i t t l e i n f o r m a t i o n about whether p a t i e n t s p r e f e r c o g n i t i v e or a f f e c t i v e i n t e r v e n t i o n s or what demographic or p s y c h o l o g i c a l f a c t o r s may a f f e c t the p r e f e r e n c e . Problem L i t t l e i s known about p r e f e r e n c e s of cancer p a t i e n t s f o r c o g n i t i v e or a f f e c t i v e i n t e r v e n t i o n s p r i o r t o or d u r i n g a course o f r a d i o t h e r a p y or how a n x i e t y may a f f e c t these p r e f e r e n c e s . T h e r e f o r e , t h i s study seeks t o add t o a v a i l a b l e knowledge i n these a r e a s . 5 Purposes The study i s designed t o f u l f i l l the f o l l o w i n g purposes: 1. To d e s c r i b e h e a l t h care p r e f e r e n c e s , as measured by the Health Care P r e f e r e n c e Survey [HCPS], among cancer p a t i e n t s r e c e i v i n g r a d i o t h e r a p y f o r the f i r s t time. 2. To examine the r e l a t i o n s h i p between s e l e c t e d demographic v a r i a b l e s and p a t i e n t s ' h e a l t h care p r e f e r e n c e s 3. To examine the r e l a t i o n s h i p between p a t i e n t s ' a n x i e t y , as measured by the S t a t e - T r a i t Anxiety Inventory CSTAI3, and t h e i r h e a l t h c a r e p r e f e r -ences . D e f i n i t i o n o f Terms Health Care P r e f e r e n c e : The s e l e c t i o n o f or pr e f e r e n c e f o r a c o g n i t i v e h e a l t h care i n t e r v e n t i o n or f o r an a f f e c t i v e h e a l t h c a r e i n t e r v e n t i o n as d e s c r i b e d i n the items o f the HCPS. C o g n i t i v e (Health Care) I n t e r v e n t i o n : i s d e f i n e d by the items o f the HCPS as the p r o v i s i o n by a h e a l t h care worker of f a c t s , i n f o r m a t i o n or the explan-a t i o n o f procedures. A f f e c t i v e (Health Care) I n t e r v e n t i o n : i s d e f i n e d by the items of the HCPS as the p r o v i s i o n by a h e a l t h care worker of emotional support. S t a t e A n x i e t y : Defined by S p i e l b e r g e r , (1977) f o r the STAI as: a t r a n s i t o r y emotional s t a t e or c o n d i t i o n o f the human organism t h a t v a r i e s i n i n t e n s i t y and f l u c t u a t e s over time. T h i s c o n d i t i o n i s c h a r a c t e r i z e d by s u b j e c t i v e c o n s c i o u s l y p e r c e i v e d f e e l i n g s o f t e n s i o n and apprehens-i o n , and a c t i v a t i o n o f the autonomic nervous system. L e v e l of A-State should be high i n circumstances t h a t are p e r c e i v e d by an i n d i v i d u a l t o be t h r e a t e n i n g , i r r e s p e c t i v e of the o b j e c t i v e danger; A-State i n t e n s i t y should be low i n circumstances i n which an e x i s t i n g danger i s not p e r c e i v e d as t h r e a t e n i n g . ( p . 39) Threat: Defined by S p i e l b e r g e r (1977) as: an i n d i v i d u a l ' s i d i o s y n c r a t i c p e r c e p t i o n o f a p a r t i c u l a r s i t u a t i o n as p h y s i c a l l y or psycho-l o g i c a l l y dangerous. The a p p r a i s a l o f a s i t u a t i o n as dangerous or t h r e a t e n i n g w i l l be determined, i n p a r t , by an i n d i v i d u a l ' s p e r s o n a l i t y d i s p o s i t i o n and past experience with s i m i l a r s i t u a t i o n s . (p. 30) T r a i t a n x i e t y : Defined by S p i e l b e r g e r , (1977) f o r the STAI as: r e l a t i v e l y s t a b l e i n d i v i d u a l d i f f e r e n c e s i n a n x i e t y proneness, t h a t i s , t o d i f f e r e n c e s i n the d i s p o s i t i o n t o p e r c e i v e a wide range of st i m u l u s s i t u a t i o n s as dangerous or t h r e a t e n -i n g and i n the tendency t o respond t o such t h r e a t s with A-State r e a c t i o n s . A - T r a i t may a l s o be regarded as r e f l e c t i n g i n d i v i d u a l d i f f e r e n c e s i n the frequency and the i n t e n s i t y with which A-States have been manifested i n the p a s t , and i n the p r o b a b i l i t y t h a t such s t a t e s w i l l be experienced i n the f u t u r e . <p.39) 7 Assumptions and L i m i t a t i o n s There are f o u r major assumptions i n t h i s study: 1. Both a f f e c t i v e and c o g n i t i v e i n t e r v e n t i o n s are v i t a l components of a cancer p a t i e n t ' s r a d i o t h e r a p y treatment. 2. Anxiety i s a common emotional response t o the d i a g n o s i s and treatment of cancer and i n d i v i d u a l p a t i e n t s vary i n the amount and extent o f t h e i r a n x i e t y response t o the d i s e a s e and treatment. 3 . S u b j e c t s w i l l t r u t h f u l l y and a c c u r a t e l y respond on the d a t a - g a t h e r i n g instruments. 4. The instruments used i n the study are r e l i a b l e and v a l i d . The major l i m i t a t i o n o f the study i s t h a t the sample p o p u l a t i o n r e p r e s e n t s o n l y a sma l l subset of a l l cancer p a t i e n t s i n the Cancer C o n t r o l Agency of B r i t i s h Columbia CCCABC] catchment area and the f i n d i n g s are comparable o n l y t o those f o r s i m i l a r p o p u l a t i o n s of cancer p a t i e n t s . a CHAPTER 2 REVIEW OF RELEVANT LITERATURE I n t r o d u c t i o n Cancer p a t i e n t s cope with many r e a l and imaginary t h r e a t s i n the course of t h e i r d i a g n o s i s and treatment. Cancer i s o f t e n seen as an unexpected death sentence (Quint, 1965; Creech, 1975). I t i s not s u r p r i s i n g t h a t newly diagnosed cancer p a t i e n t s have a predominance of l i f e and death concerns (Weisman & Worden, 1976). Cancer c a r r i e s a c o n n o t a t i o n f o r i n d i v i d u a l s o f f e a r , prolonged p a i n , l o s s of b o d i l y f u n c t i o n and m u t i l a t i o n (Creech, 1975). Not only does the d i s e a s e s i g n i f y a t h r e a t t o i n d i v i d u a l s u r v i v a l but the treatments f o r cancer a c c o r d i n g t o H o l l a n d (1976) "...are sometimes as fo r m i d a b l e as the d i s e a s e i t s e l f " (p.264). Rotman, Rogow, Deleon & Heskel(1977), l o o k i n g a t p a t i e n t s undergoing r a d i o t h e r a p y , observed t h a t "Few t h e r a p e u t i c m o d a l i t i e s i n medicine induce more misunderstanding, c o n f u s i o n and apprehension, than the use of i r r a d i a t i o n therapy i n cancer treatment." (p.744). Many r e s e a r c h e r s agree t h a t cancer p a t i e n t s r e c e i v i n g r a d i o t h e r a p y experience high degrees of s t r e s s , a n x i e t y and depres-s i o n (Peck & Boland, 1977; Rotman e t a l . , 1977; F o r e s t e r , K o r n f e l d & F l e i s s , 1978). While other cancer treatment m o d a l i t i e s may evoke s i m i l a r emotional 9 r e s p o n s e s , t h e f o c u s o f t h i s l i t e r a t u r e r e v i e w w i l l be on t h e c o n c e r n s o f r a d i o t h e r a p y p a t i e n t s . I n a d d i t i o n t o t h e v e r y r e a l t h r e a t s p o s e d by t h e d i a g n o s i s and t r e a t m e n t o f c a n c e r , many p a t i e n t s have f r i g h t e n i n g f a n t a s i e s a b o u t t h e i r f u t u r e s b e c a u s e t h e d i s e a s e i s s e e n a s m y s t e r i o u s , i n t r a c t a b l e and o f unknown e t i o l o g y . S o n t a g (1977) a p t l y d e s c r i b e s i t a s " . . . t h e d i s e a s e t h a t d o e s n ' t knock b e f o r e i t e n t e r s , c a n c e r ... an i l l n e s s e x p e r i e n c e d a s a r u t h l e s s , s e c r e t i n v a s i o n " ( p . 5 ) . S o n t a g f u r t h e r a r g u e s t h a t t h e m y s t e r i o u s c h a r a c t e r o f t h e d i s e a s e a r o u s e s d r e a d , shame and t h e f e a r o f c o n t a g i o n i n p a t i e n t s and o t h e r s . When c a n c e r p a t i e n t s a r e t h r e a t e n e d by new and u n f a m i l i a r d i a g n o s t i c t e s t s and t r e a t m e n t s , F r i e l (1981) c o n s i d e r e d t h a t a p r o b a b l e r e s p o n s e would be a d y s f u n c -t i o n a l i n c r e a s e i n a n x i e t y . J o h n s o n and Blumberg (1984) c i t e many e m o t i o n a l r e s p o n s e s , i n c l u d i n g s h o c k , a n g e r , g u i l t , a n x i e t y , d e p r e s s i o n , g r i e f , b i t t e r n e s s , and s e l f - p i t y w h i c h may c o r r e s p o n d t o d i f f e r e n t p h a s e s o f t h e c a n c e r e x p e r i e n c e . D u r i n g s u r g e r y and t r e a t m e n t , commonly r e p o r t e d e m o t i o n a l r e s p o n s e s a r e a l i e n a t i o n , f e a r s o f m u t i l a t i o n , m o r t a l i t y and d e n i a l . H e a l t h c a r e w o r k e r s r e c o g n i z e t h e i m p a c t o f t h e b i o l o g i c a l and p s y c h o l o g i c a l t h r e a t s c o n f r o n t e d by c a n c e r p a t i e n t s . The c l i n i c a l dilemma f o r h e a l t h c a r e w o r k e r s i s how b e s t t o i n t e r v e n e i n o r d e r t o h e l p t h e 10 p a t i e n t c o p e w i t h t h e e x p e r i e n c e o f t h e d i s e a s e and t r e a t m e n t . T h e r e i s a r a n g e o f i n t e r v e n t i o n s u s e d by h e a l t h c a r e w o r k e r s . F o r t h e p u r p o s e s o f t h i s s t u d y , o n l y i n t e r v e n t i o n s w h i c h c a n be c a t e g o r i z e d a s c o g n i t i v e o r a f f e c t i v e w i l l be c o n s i d e r e d . I n t h i s c h a p t e r , t h e r e s e a r c h e r w i l l s e l e c t i v l e l y r e v i e w l i t e r a t u r e on c o g n i t i v e and a f f e c t i v e i n t e r v e n t i o n s , p a t i e n t p r e f e r -e n c e s f o r i n t e r v e n t i o n and t h e e f f e c t s o f a n x i e t y . C o g n i t i v e I n t e r v e n t i o n s : P a t i e n t E d u c a t i o n L a z a r u s (1977) d e f i n e s c o p i n g a s an i n t r a - p s y c h i c p r o c e s s i n w h i c h an i n d i v i d u a l r e c o g n i z e s a s i t u a t i o n a s t h r e a t e n i n g ( a p p r a i s a l ) and t a k e s a c t i o n t o m o d i f y t h e t h r e a t . I n t h e p r o c e s s o f a p p r a i s a l c e r t a i n e m o t i o n s a r e e v o k e d , and t h e c o g n i t i v e p r o c e s s o f t a k i n g d i r e c t a c t i o n m e d i a t e s ( r e d u c e s ) t h e e v o k e d e m o t i o n . The a c t i o n s o r s t r a t e g i e s t h a t c a n c e r p a t i e n t s employ t o d e a l w i t h t h r e a t e n i n g s i t u a t i o n s and t h e s u b s e q u e n t e m o t i o n a l d i s t r e s s have been s t u d i e d by many r e s e a r c h e r s (Weisman & Worden, 1976; M i l l e r & N y g r e n , 1978; Welch, 1981; P r u y n , 1983; G o t a y , 1 9 8 4 ) . A number o f a u t h o r s , c i t e d b elow, have i d e n t i f i e d p a t i e n t s ' need f o r i n f o r m -a t i o n and t h e i r c h o i c e o f i n f o r m a t i o n - s e e k i n g a s an e f f e c t i v e c o p i n g s t r a t e g y . P r u y n ( 1 9 8 3 ) , s t u d y i n g b r e a s t c a n c e r p a t i e n t s , f o u n d t h a t u n c e r t a i n t y due t o a l a c k o f i n f o r m a t i o n p r o d u c e d g r e a t s t r e s s d u r i n g d i a g n o s i s and t r e a t m e n t . S e e k i n g i n f o r m a t i o n was c i t e d a s t h e most common s t r a t e g y t o r e d u c e u n c e r t a i n t y . G o t a y ( 1 9 8 4 ) , i n a c o m p a r a t i v e s t u d y o f e a r l y and a d v a n c e d s t a g e c a n c e r p a t i e n t s , f o u n d t h a t i n f o r m a t i o n -s e e k i n g was t h e s e c o n d most common s t r a t e g y c i t e d by e a r l y - s t a g e p a t i e n t s ( a f t e r " t a k i n g f i r m a c t i o n " ) ( p . 6 0 8 ) , b u t f o r t h e a d v a n c e d s t a g e p a t i e n t s i t came much l o w e r on t h e l i s t . Among t h o s e p a t i e n t s who d e s c r i b e d t h e m s e l v e s a s b e i n g a f r a i d o f c a n c e r , i n f o r m a t i o n - s e e k i n g was t h e most common s t r a t e g y . Weisman and Worden ( 1 9 7 6 ) , s t u d y i n g c a n c e r p a t i e n t s i n t h e f i r s t 100 d a y s o f d i a g n o s i s and t r e a t m e n t , f o u n d t h a t p a t i e n t s commonly u s e d i n f o r m a t i o n - s e e k i n g a s an e f f e c t i v e c o p i n g s t r a t e g y . N u r s e s have e f f e c t i v e l y u s e d p a t i e n t s ' i n f o r m a t i o n - s e e k i n g a s a b a s i s f o r s u p p o r t i n t e r v e n t i o n s by t e a c h i n g p a t i e n t s and t h e i r f a m i l i e s a b o u t t h e d i s e a s e and i t s t r e a t m e n t . Welch ( 1 9 8 1 ) , r e t r o s p e c t i v e l y e x a m i n i n g t h e p e r c e p t i o n s o f s u p p o r t i v e n u r s i n g i n t e r v e n t i o n s among t h e f a m i l i e s o f c a n c e r p a t i e n t s , f o u n d t h a t i n f o r m a t i o n i n t e r v e n t i o n s s u b s t a n t -i a l l y r e d u c e d f a m i l y a n x i e t y and h e l p e d f a m i l y c o p i n g . F r i e d m a n (1980) e x t e n s i v e l y s u r v e y e d t h e l i t e r a t u r e on how p a t i e n t s r e a c t t o c a n c e r i n o r d e r t o c o n s t r u c t g u i d e l i n e s f o r i n t e r v e n t i o n s by h e a l t h c a r e w o r k e r s . I n f o r m a t i o n - s e e k i n g was i d e n t i f i e d a s t h e number one s t r a t e g y u s e d by p a t i e n t s t o c o p e w i t h c a n c e r . Mengel 12 (1982) o b s e r v e d t h a t t h e most common i n t e r v e n t i o n employed by n u r s e s t o h e l p p a t i e n t s c o p e i s t o i m p r o v e t h e r e s o u r c e s o f t h e p a t i e n t s , g e n e r a l l y by p r o v i d i n g i n f o r m a t i o n . T h e r e i s l i t t l e l i t e r a t u r e r e g a r d i n g c a n c e r p a t i e n t e d u c a t i o n compared t o o t h e r t o p i c s i n c a n c e r c a r e and t h e m a j o r i t y o f t h e a r t i c l e s on c a n c e r p a t i e n t e d u c a t i o n have been p u b l i s h e d i n n u r s i n g j o u r n a l s ( G r e e n , 1 9 8 4 ) . J o h n s o n and G r e e n (1981) f o u n d t h a t c a n c e r p a t i e n t e d u c a t i o n i n c r e a s i n g l y h as become an i n t e g r a l and r e c o g n i z a b l e a s p e c t o f c a n c e r n u r s i n g p r a c t i c e . The l a t t e r v i e w h a s been s u b s t a n t i a t e d by two n u r s i n g g r o u p s , t h e O n c o l o g y N u r s i n g S o c i e t y CONS] and t h e A m e r i c a n N u r s e s ' A s s o c i a t i o n i n t h e i r p o s i t i o n p a p e r Outcome S t a n d a r d s f o r C a n c e r N u r s i n g P r a c t i c e ( 1 9 7 9 ) . P a t i e n t e d u c a t i o n i s s e e n a s a r e c o g n i z e d and r e q u i r e d component o f t h e n u r s i n g c a r e o f t h e c a n c e r p a t i e n t . A l t h o u g h many o f t h e t e n outcome s t a n d a r d s a d d r e s s t h e i s s u e o f p a t i e n t e d u c a t i on, t h e s e c o n d i s s p e c i f i c a l l y a d d r e s s e d t o i n f o r m a t i o n . I t r e a d s : The c l i e n t and f a m i l y p o s s e s s k nowledge a b o u t t h e d i s e a s e and t h e r a p y i n o r d e r t o a t t a i n s e l f - m a n a g e m e n t , p a r t i c i p a t i o n i n t h e r a p y , o p t i m a l l i v i n g and p e a c e f u l d e a t h , (p.4) I n t h e r a t i o n a l e f o r t h e above s t a n d a r d o t h e r u s e f u l p r i n c i p l e s a r e l a i d o u t : The r a t e and t h e l e v e l o f i n f o r m a t i o n p r o v i d e d t o a c l i e n t and f a m i l y i s d e t e r m i n e d 13 by t h e i n d i v i d u a l ' s i n t e l l e c t u a l c a p a c i t y and e m o t i o n a l r e s o u r c e s . (p.4) and: S e c u r i n g a d e q u a t e i n f o r m a t i o n i s a p r e r e q u i s i t e t o d e v e l o p m e n t o f f u n c t i o n a l c o p i n g , (p.4) J o h n s o n and Blumberg (1984) i n c o r p o r a t e many o f t h e themes and i s s u e s o f t h e ONS s t a n d a r d i n t h e i r more f o r m a l d e f i n i t i o n o f c a n c e r p a t i e n t e d u c a t i o n a s : a s e r i e s o f s t r u c t u r e d o r n o n - s t r u c t u r e d e x p e r i e n c e s w h i c h a r e d e s i g n e d t o a s s i s t p a t i e n t s t o c o p e v o l u n t a r i l y w i t h t h e immed-i a t e c r i s i s r e s p o n s e t o t h e i r d i a g n o s i s , w i t h l o n g t e r m a d j u s t m e n t s and w i t h symptoms; g a i n needed i n f o r m a t i o n a b o u t s o u r c e s o f p r e v e n t -i o n , d i a g n o s i s , and c a r e ; and d e v e l o p needed s k i l l s , k n o w l e d g e , and a t t i t u d e s t o m a i n t a i n o r r e g a i n h e a l t h s t a t u s , ( p . 9) P a t i e n t e d u c a t i o n s t a r t s w i t h t h e i n d i v i d u a l p a t i e n t a s t h e f o c u s o f a t t e n t i o n (Abrams, 1966; Bahnson, 1975; C r e e c h , 1 9 7 5 ) . A number o f e d u c a t i o n a l r e s e a r c h e r s have s t a t e d t h a t e d u c a t i o n p r o g r a m s need t o be t a i l o r e d t o t h e s p e c i f i c n e e d s o f p a t i e n t s i n o r d e r t o be e f f e c t i v e ( J o h n s o n & G r e e n , 1981; Watson, 1982; J o n e s , M c L e l l a n , S h a n i , P e l l e g r i n i , G r o v e r & E n g s t r o m , 1982; J o h n s o n & B l u m b e r g , 1 9 8 4 ) . The p r o c e s s o f p a t i e n t e d u c a t i o n i n c l u d e s r e c o g -n i z i n g t h e f a c t o r s w h i c h a f f e c t l e a r n i n g . T h e s e f a c t o r s f a l l i n t o two b r o a d c a t e g o r i e s ; one a b i l i t y - r e l a t e d and one e m o t i o n a l . The f i r s t o f t h e s e i s t h e most c l e a r - c u t and e a s i e s t t o d e s c r i b e . A p a t i e n t ' s i n t e l l e c t u a l r e s o u r c e s and v a r i e t y o f e d u c a t i o n a l e x p e r i e n c e s a r e 14 f a c t o r s w h i c h c a n a f f e c t new l e a r n i n g a b o u t d i a g n o s i s and t r e a t m e n t ( F r i e l , , 1981; B r a i n e r d , 1 9 8 1 ) . The i n d i v i d u a l ' s i m m e d i a t e a d a p t a t i o n t o d i a g n o s i s and t r e a t m e n t d e pends i n p a r t on h i s / h e r i n t e l l e c t u a l a b i l i t y and knowledge a b o u t c a n c e r (Bahnson, 1 9 7 5 ) . Age and p h y s i c a l c o n d i t i o n a l s o a f f e c t a p a t i e n t ' s a b i l i t y t o comprehend and t o p a r t i c i p a t e i n l e a r n i n g e x p e r i e n c e s ( J o h n s o n & B l u m b e r g , 1 9 8 4 ) . F o r c a n c e r p a t i e n t s , many o f t h e e m o t i o n a l r e s -p o n s e s t o t h e i r d i s e a s e and t r e a t m e n t c a n a d v e r s e l y a f f e c t t h e i r l e a r n i n g ( B l u m b e r g , F l a h e r t y , & L e w i s , 1980; J o h n s o n & Blumberg, 1 9 8 4 ) . A n x i e t y c a n be an i n t e n s e e m o t i o n w h i c h c a n i n t e r f e r e w i t h t h e p a t i e n t ' s a b i l i t y t o comprehend and p r o c e s s new l e a r n i n g (Redman, 1 9 7 8 ) . W i l l i a m s (1981) a r g u e s t h a t c a n c e r p a t i e n t s a r e a s p e c i a l t e a c h i n g p r o b l e m b e c a u s e t h e a s s o c i a t i o n s w i t h c a n c e r a r e s o t h r e a t e n i n g t h a t t h e s u b s e q u e n t a n x i e t y i s d i s a b l i n g . One s o u r c e o f i m m o b i l i z i n g a n x i e t y i s "... t h e l a c k o f p e r c e p t u a l o r o r i e n t i n g i n f o r m a t i o n a b o u t t h e e v e n t b e f o r e i t s o c c u r r e n c e " ( p . 1 2 3 ) . W i l l i a m s m a i n t a i n s t h a t l e a r n i n g ( i . e . , r e t a i n i n g i n f o r m a t i o n ) i n t h e e a r l y d i a g n o s t i c and t r e a t m e n t p h a s e o f c a n c e r , i s impeded by t h e p a t i e n t ' s l e v e l o f a n x i e t y . She s u g g e s t s t h a t l e a r n i n g i s f a c i l i t a t e d i n t h i s p h a s e o f t h e i l l n e s s when n u r s e s pay p r i o r i t y a t t e n t i o n and r e s p o n d t o t h e c o n c e r n s and i s s u e s t h a t t h e p a t i e n t s p e r c e i v e a s 15 i m p o r t a n t b e f o r e p r o c e e d i n g w i t h any f o r m a l t e a c h i n g . "Once t h e p a t i e n t p e r c e i v e s t h a t t h e n u r s e r e g a r d s h i s p r e s s i n g agenda a s i m p o r t a n t , he w i l l r e g a r d t h e i n f o r m a t i o n g i v e n by t h a t n u r s e a s i m p o r t a n t " ( p . 1 2 7 ) . W i l l i a m s o b s e r v e d t h a t i n f o r m a t i o n g i v e n by n u r s e s and r e i n f o r c e d o v e r s u c c e s s i v e v i s i t s was r e t a i n e d . Dodd (1982a) a l s o f o u n d t h a t i n f o r m a t i o n was r e t a i n e d when i t was r e i n f o r c e d p e r i o d i c a l l y . A f f e c t i v e I n t e r v e n t i o n s : E m o t i o n a l S u p p o r t A u t h o r s d i s c u s s i n g a f f e c t i v e i n t e r v e n t i o n s have t a k e n two a p p r o a c h e s . The f i r s t e ncompasses t h e o r e t i c a l and c l i n i c a l r e c o m m e n d a t i o n s f o r t h e f o r m , c o n t e n t and t i m i n g o f a f f e c t i v e n u r s i n g i n t e r v e n t i o n s . T h i s a p p r o a c h i s o f t e n t a k e n i n n u r s i n g t e x t b o o k s . The s e c o n d a p p r o a c h i n c l u d e s i n v e s t i g a t i v e e f f o r t s t o i d e n t i f y a p p r o p r i a t e a f f e c t i v e i n t e r v e n t i o n s t r a t e g i e s and e v a l u a t e t h e i r e f f e c t i v e n e s s . E x a m p l e s o f t h e f i r s t a p p r o a c h i n c l u d e M a r i n o and K o o s e r (1981) and Yasko (1982) d i s c u s s e d b elow. M a r i n o and K o o s e r (1981) a r g u e t h a t c a n c e r p a t i e n t s r e q u i r e a d d i t i o n a l e m o t i o n a l s u p p o r t i n p e r i o d s o f h i g h r i s k s u c h a s t h e d i a g n o s i s and t r e a t m e n t p h a s e s o f t h e i r i l l n e s s . They recommend a r a n g e o f i n t e r v e n t i o n s , i n c l u d i n g b o t h c o g n i t i v e and a f f e c t i v e . However, t h e y do n o t p r o v i d e any g u i d a n c e a s t o w h i c h i n t e r v e n t i o n s s h o u l d be u s e d f i r s t i n t h e s e h i g h r i s k p h a s e s . 16 Y a s k o <1982> recommends t h a t n u r s e s i n t e r v e n e t o p r o v i d e e m o t i o n a l s u p p o r t t o r a d i o t h e r a p y p a t i e n t s b e f o r e t h e y p r o v i d e i n f o r m a t i o n i n o r d e r t o f a c i l i t a t e e f f e c t i v e c o p i n g . She d e f i n e s e m o t i o n a l s u p p o r t a s n u r s i n g b e h a v i o r s ( i n t e r v e n t i o n s ) s u c h a s a c t i v e l i s t e n i n g , e x p l o r i n g t h o u g h t s and f e e l i n g s , and o t h e r a c t i o n s w h i c h f a c i l i t a t e t h e c a n c e r p a t i e n t ' s v e r b a l i z -a t i o n o f c a r e s and c o n c e r n s . The p a t i e n t i s g i v e n n e c e s s a r y f e e d b a c k f r o m t h e n u r s e t o i n i t i a t e and f a c i l i t a t e t h e c o p i n g p r o c e s s . C l i n i c i a n s have u s e d o t h e r a f f e c t i v e i n t e r v e n t i o n s t o d e c r e a s e a n x i e t y . Cobb (1984) a d v o c a t e s t h e u s e o f r e l a x a t i o n t e c h n i q u e s . She r e p o r t s t h a t , a l t h o u g h t h e r e a r e no c o n t r o l l e d s t u d i e s i n t h i s a r e a w i t h o n c o l o g y p a t i e n t s , t h e r e may be b e n e f i t s f o r p a t i e n t s i n r e d u c i n g a n x i e t y and s i d e e f f e c t s a s s o c i a t e d w i t h t r e a t m e n t s . In G o t a y ( 1 9 8 4 ) , d i s c u s s e d e a r l i e r i n t h e s e c t i o n on c o g n i t i v e i n t e r v e n t i o n s , i t was s e e n t h a t p a t i e n t s and t h e i r f a m i l i e s s o u g h t i n f o r m a t i o n . S e e k i n g s o c i a l s u p p o r t ( a f f e c t i v e i n t e r v e n t i o n s ) was a l s o a commonly c h o s e n s t r a t e g y f o r p a t i e n t s and t h e i r mates a t b o t h e a r l y and l a t e s t a g e s o f t h e d i s e a s e . T h e r e a r e few s t u d i e s o f a f f e c t i v e i n t e r v e n t i o n s i n i s o l a t i o n . They a r e u s u a l l y s t u d i e d i n c o m b i n a t i o n w i t h c o g n i t i v e o r o t h e r i n t e r v e n t i o n s . T h e r e i s n o t a l o t o f v a l i d and r e l i a b l e r e s e a r c h b e c a u s e o f m e t h o d o l o g i c a l p r o b l e m s i n c l u d i n g p o s s i b l e b i a s b e c a u s e -the r e s e a r c h e r i s a l s o p r a c t i t i o n e r , l a c k o f c o n t r o l g r o u p s and p u r e l y a n e c d o t a l e v a l u a t i o n s o f t h e s u c c e s s o f i n t e r v e n t i o n s . Worden and Weisman (1980) m a i n t a i n t h a t t h e r e l a t i v e e f f e c t i v e n e s s o f a f f e c t i v e and c o g n i t i v e i n t e r v e n t i o n s i s unknown. They a t t e m p t e d t o i d e n t i f y " a t r i s k " c a n c e r p a t i e n t s who a c c e p t e d a f f e c t i v e c o u n s e l l i n g and t o d i f f e r e n t i a t e them f r o m a c o h o r t g r o u p . They q u e s t i o n t h e u s e o f b l a n k e t e m o t i o n a l s u p p o r t p r o g r a m s when t h e e f f i c a c y o f c o u n s e l l i n g i n " h i g h r i s k " c a n c e r p a t i e n t s i s unknown. Gordon e t a l . (1980) d e v e l o p e d and e v a l u a t e d a v a r i e t y o f a f f e c t i v e and c o g n i t i v e i n t e r v e n t i o n s t r a t -e g i e s b a s e d on 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 . The r e s e a r c h e r s e v a l u a t e d a v a r i e t y o f i n t e r v e n t i o n s t r a t -e g i e s : D p r o v i s i o n o f i n f o r m a t i o n , 2 ) c o u n s e l l i n g a b o u t t h e p a t i e n t ' s r e a c t i o n s and f e e l i n g s t o w a r d s t h e d i s e a s e and t r e a t m e n t and 3) e n v i r o n m e n t a l m a n i p u l a t i o n w h i c h i n c l u d e d r e f e r r a l s and f i n a n c i a l s u p p o r t . They r e p o r t e d t h a t b o t h t h e i n t e r v e n t i o n and c o n t r o l g r o u p s e x p e r -i e n c e d improvement o v e r t i m e i n p s y c h o s o c i a l p r o b l e m s . However, t h e i n t e r v e n t i o n g r o u p e v i d e n c e d a more r a p i d d e c r e a s e i n n e g a t i v e a f f e c t and e x p e r i e n c e d b o t h s h o r t and l o n g t e r m b e n e f i t s f r o m t h e i n t e r v e n t i o n s . C a i n , K o h o r n , Q u i n l a n , L a t i m e r , and S c h w a r t z (1986) s t u d i e d t h e e f f e c t i v e n e s s o f a t h e m a t i c c o u n s e l l i n g 18 model w i t h g y n e c o l o g y p a t i e n t s i n b o t h i n d i v i d u a l and g r o u p f o r m a t s . The program c o n s i s t e d o f a s e r i e s o f s t r u c t u r e d t h e m a t i c s e s s i o n s i n w h i c h b o t h c o g n i t i v e and a f f e c t i v e i n t e r v e n t i o n s were com b i n e d w i t h a p r o b l e m -s o l v i n g component. Women i n t h e i n t e r v e n t i o n g r o u p s had s u b s t a n t i a l l y l e s s p s y c h o s o c i a l d i s t r e s s s i x months and one y e a r l a t e r . P a t i e n t P r e f e r e n c e s f o r H e a l t h C a r e I n t e r v e n t i o n The a s s e s s m e n t o f p a t i e n t s ' need and p r e f e r e n c e f o r i n t e r v e n t i o n h a s o f t e n been f i l t e r e d t h r o u g h t h e p e r c e p t i o n s o f h e a l t h c a r e w o r k e r s . Most e a r l y r e s e a r c h c o n c e n t r a t e d on p a t i e n t p r e f e r e n c e s w i t h i n t h e c a t e g o r y o f c o g n i t i v e i n t e r v e n t i o n s . L i n e h a n (1966) was one o f t h e f i r s t r e s e a r c h e r s t o a s k what p a t i e n t s wanted t o know a b o u t t h e i r d i s e a s e , t h e t r e a t m e n t and i t s e f f e c t on t h e i r a c t i v i t i e s o f d a i l y l i v i n g . They wanted s i m p l e a n s w e r s , and f e w e r m e d i c a l t e r m s . They wanted more e x p l a n a t i o n s o f what was done t o them and why; what t o e x p e c t a f t e r an o p e r a t i o n o r t r e a t m e n t ; more e x p l a n a t i o n o f n u r s i n g p r o c e d u r e s , (p.1068) Dodge <1969), i n a s t u d y o f p a t i e n t s ' p e r c e p t i o n s o f t h e i r c o g n i t i v e n e e d s , f o u n d t h a t p a t i e n t s p l a c e d a h i g h e r p r i o r i t y on i n f o r m a t i o n t h a t was s e e n a s e s s e n -t i a l t o t h e i r p h y s i c a l and e m o t i o n a l s u r v i v a l . M e d i c a l and s u r g i c a l p a t i e n t s were i n t e r v i e w e d h a l f - w a y t h r o u g h t h e i r h o s p i t a l e x p e r i e n c e and a s k e d t o p r i o r i t i z e t h e " k i n d s o f i n f o r m a t i o n t h a t t h e y f e l t t h e y s h o u l d be g i v e n and t h e r e l a t i v e i m p o r t a n c e t h e y a t t r i b u t e d t o r e c e i v i n g v a r i o u s k i n d s o f i n f o r m a t i o n " ( p . 5 0 4 ) . She l e a r n e d t h a t " P a t i e n t s were p a r t i c u l a r l y c o n c e r n e d w i t h r e c e i v i n g t h e k i n d s o f i n f o r m a t i o n w h i c h would e n a b l e them t o p l a n r e a l i s t i c a l l y f o r t h e i r i m m e d i a t e and l o n g - r a n g e l i v e s " ( p . 5 0 9 ) . L a u e r , Murphy, and Powers (1981) f o u n d t h a t n u r s e s and c a n c e r p a t i e n t s d i f f e r e d i n t h e i r p e r c e p t i o n s o f l e a r n i n g n e e d s . I n t h e i r s t u d y , n u r s e s and p a t i e n t s d i f f e r e d on t h e r a n k o r d e r i n g o f 20 g e n e r a l i n f o r m a t i o n i t e m s . N u r s e s i d e n t i f i e d p a t i e n t s ' l e a r n i n g n e e d s a s : 1 ) a v a i l a b i l i t y o f f i n a n c i a l a s s i s t a n c e ; 2 ) s e l f - c a r e a t home and work; and 3 ) p s y c h o s o c i a l i s s u e s o f communi-c a t i o n w i t h f r i e n d s and f a m i l i e s a b o u t t h e i r c o n c e r n s . P a t i e n t s i d e n t i f i e d l e a r n i n g a b o u t t h e i r d i a g n o s i s a s t h e i r f i r s t c o n c e r n , f o l l o w e d by 2 ) p l a n o f c a r e , 3 ) s e l f - c a r e a t home and work; and 4)what t h e i r e x p e r -i e n c e s would be l i k e d u r i n g d i a g n o s i s and t r e a t m e n t . C a s s i l e t h , Z u p k i s , S u t t o n - S m i t h & March (1980) s t u d i e d a mixed sample o f 256 c a n c e r p a t i e n t s i n t h e p e r i o d a f t e r t h e i r f i r s t d i a g n o s i s . The p a t i e n t s c o m p l e t e d an I n f o r m a t i o n S t y l e s Q u e s t i o n n a i r e i n w h i c h t h e y i n d i c a t e d , on a f i v e p o i n t L i k e r t - t y p e s c a l e , how much t h e y a g r e e d o r d i s a g r e e d w i t h s t a t e m e n t s a b o u t t h e amount, t y p e (good news a n d / o r bad) and s o u r c e o f i n f o r m a t i o n p r e s e n t e d t o them. The a u t h o r s were t r y i n g 20 t o d e t e r m i n e t h e d e g r e e t o w h i c h p a t i e n t s p r e f e r r e d t o become i n f o r m e d a b o u t and p a r t i c i p a t e i n t h e i r m e d i c a l c a r e . The s t u d y showed t h a t a s age i n c r e a s e d ( t h e median age was 5 5 . 5 ) , t h e d e s i r e f o r d e t a i l e d i n f o r m a t i o n and f o r a c t i v e p a r t i c i p a t i o n d e c r e a s e d . They a l s o f o u n d an i n c r e a s e d p r e f e r e n c e f o r i n f o r m a t i o n among w h i t e s , t h e b e t t e r e d u c a t e d , and t h o s e more r e c e n t l y d i a g n o s e d . Sex and p e r f o r m a n c e s t a t u s were u n r e l a t e d t o i n f o r m a t i o n p r e f e r e n c e . L e v e n s o n , P f e i f f e r b a u m , C o p e l a n d and S i l b e r b e r g (1981) u s e d a more r e t r o s p e c t i v e a p p r o a c h . They l o o k e d a t a g r o u p o f c a n c e r p a t i e n t s i n a p e d i a t r i c (age 11 -20) o u t p a t i e n t s e t t i n g . A f t e r t h e p a t i e n t s had been t h r o u g h a m u l t i - d i s c i p l i n a r y e d u c a t i o n a l p r o g ram t h e y were a s k e d t o answer q u e s t i o n s r e l a t e d t o amount and s o u r c e o f k n owledge and t h e means by w h i c h i t was a c q u i r e d . They were a l s o a s k e d i f t h e y would have wanted more i n f o r m a t i o n f o r t h e m s e l v e s o r f o r t h e i r f a m i l i e s . Many (65?<) o f t h e p a t i e n t s s a i d t h e y d i d n o t f e e l t h a t more i n f o r m a t i o n would have been h e l p f u l f o r t h e m s e l v e s p e r s o n a l l y b u t 42?s s a i d t h e y wanted more i n f o r m a t i o n f o r t h e i r f a m i l i e s . Sex and d i a g n o s i s d i d n o t a f f e c t t h e r e s u l t s , a s i n C a s s i l e t h ' s s t u d y , b u t t i m e s i n c e d i a g n o s i s and e t h n i c i t y d i d . S p e c i f i c a l l y , H i s p a n i c p a t i e n t s wanted more i n f o r m a t i o n f o r t h e i r p a r e n t s . I n c o n t r a s t t o t h e f i n d i n g s o f t h e C a s s i l e t h s t u d y , t h e most r e c e n t l y d i a g n o s e d were l e s s l i k e l y t o v i e w a d d i t i o n a l i n f o r m a t i o n a s p e r s o n a l l y h e l p f u l . Few r e s e a r c h e r s have l o o k e d a t t h e t i m i n g o f g i v i n g i n f o r m a t i o n t o c a n c e r p a t i e n t s . Abrams ( 1 9 6 9 ) , e x a m i n i n g d o c t o r - p a t i e n t c o m m u n i c a t i o n s , a r g u e s t h a t t h e s t y l e and c o n t e n t o f p a t i e n t c o m m u n i c a t i o n c h a n g e s d u r i n g d i f -f e r e n t p h a s e s o f t h e i l l n e s s . I n f o r m a t i o n , a c c o r d i n g t o Abrams, s h o u l d be g i v e n when t h e p a t i e n t o f f e r s " . . . t h e c l u e s t o how much o r how l i t t l e o r how o f t e n he w i s h e s t o d i s c u s s h i s d i a g n o s i s and p r o g n o s i s " ( p . 3 1 7 ) . S e v e r a l c a n c e r e d u c a t o r s s u g g e s t t h a t p a t i e n t s be g i v e n a n t i c i p a t o r y i n f o r m a t i o n p r i o r t o d i a g n o s i s and t r e a t -ment i n o r d e r t o d e c r e a s e a n x i e t y ( M a r i n o , 1981; B o u c h a r d - K u r t z & Speese-Owens, 1981; W i l l i a m s , 1 9 8 1 ) . C a n c e r p a t i e n t s i n a number o f s t u d i e s have i n d i c a t e d a n o t h e r f a c t o r a f f e c t i n g t h e i r l e a r n i n g - - t h e s o u r c e o f i n f o r m a t i o n . A d o l e s c e n t s have i d e n t i f i e d t h e i r p h y s i c i a n s a s t h e i r p r i m a r y s o u r c e o f i n f o r m a t i o n a b o u t c a n c e r ( L e v e n s o n e t a l . , 1 9 8 1 ) . A m b u l a t o r y p a t i e n t s have r e p o r t e d t h a t t h e y r e c e i v e d t h e i r k n owledge o f t h e i r d i s e a s e and t r e a t m e n t f r o m t h e i r p h y s i c i a n ( F r a n k -S t r o m b o r g & W r i g h t , 1 9 8 4 ) . They i n d i c a t e d t h a t t h e d i s c u s s i o n s w i t h t h e n u r s e s p r o v i d e d s u p p o r t and r e a s s u r a n c e r a t h e r t h a n knowledge o f t h e i r d i s e a s e and t r e a t m e n t . B u l l o u g h (1981) has r e p o r t e d t h a t , a l t h o u g h t h e n u r s i n g l i t e r a t u r e r e f e r s t o t h e t e a c h i n g and 22 e m o t i o n a l s u p p o r t i v e f u n c t i o n s o f n u r s e s , some b r e a s t c a n c e r p a t i e n t s do n o t a l w a y s p e r c e i v e n u r s e s a s s i g n i f i c a n t s o u r c e s o f i n f o r m a t i o n o r o f e m o t i o n a l s u p p o r t . O n l y 20% o f a sample o f 139 p o s t - m a s t e c t o m y p a t i e n t s d e s c r i b e d n u r s e s a s a s o u r c e o f i n f o r m a t i o n and o n l y 25% i d e n t i f i e d n u r s e s a s a s o u r c e o f e m o t i o n a l s u p p o r t . B u l l o u g h a t t r i b u t e s t h i s f i n d i n g t o a d i s c r e p -a n c y between t h e n u r s e s ' p r o f e s s i o n a l image and t h e a c t u a l r o l e t h a t n u r s e s p l a y i n t h e c l i n i c a l s e t t i n g . Dodd ( 1 9 8 5 ) , i n an e x p l o r a t o r y s t u d y , a t t e m p t e d t o d e s c r i b e c a n c e r p a t i e n t s ' p r e f e r e n c e s f o r t y p e o f i n f o r m a t i o n . P r e f e r e n c e f o r i n f o r m a t i o n was d e f i n e d a s a p r e f e r e n c e f o r c o g n i t i v e v e r s u s b e h a v i o r a l ( s u p p o r t i v e ) i n f o r m a t i o n . The s t u d y was c o n d u c t e d i n an o u t p a t i e n t r a d i o t h e r a p y c l i n i c a t a l a r g e u r b a n t e a c h i n g h o s p i t a l . The r e s e a r c h e r e x a m i n e d s e v e r a l v a r i a b l e s w h i c h m i g h t be a s s o c i a t e d w i t h p r e f e r e n c e f o r i n f o r m a t i o n , i n c l u d i n g d e m o g r a p h i c f a c t o r s , a n x i e t y and l o c u s o f c o n t r o l . Dodd f o u n d no s i g n i f i c a n t 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 e d p r e f e r e n c e s f o r i n f o r m a t i o n and no c l e a r p r e f e r e n c e was shown f o r i n f o r m a t i o n o p t i o n s ( c o g n i t i v e ) o v e r b e h a v i o r a l ( s u p p o r t i v e ) o p t i o n s . She a l s o f o u n d no s i g n i f i c a n t r e l a t i o n s h i p between s c o r e s on t h e H e a l t h C a r e P r e f e r e n c e S u r v e y [HCPS] and t h e S t a t e - T r a i t A n x i e t y I n v e n t o r y [ S T A I ] . One r e c o m m e n d a t i o n o f h e r s t u d y was t h a t t h e HCPS be t e s t e d i n a v a r i e t y o f 23 s e t t i n g s t o o b t a i n c o r r o b o r a t i v e d a t a on i t s v a l i d i t y and r e l i a b i l i t y . A n x i e t y A n x i e t y a s i t i s u s u a l l y u n d e r s t o o d i s a common e m o t i o n a l s t a t e , s u b j e c t i v e l y p e r c e i v e d a s u n p l e a s a n t i n c h a r a c t e r ( F r e u d , 1936; G r o e n , 1 9 7 3 ) . I t i s o f t e n a s s o c i a t e d w i t h t h e r e l a t e d f e e l i n g s o f f e a r , (Mowrer, 1947; M i l l e r , 1948) h e l p l e s s n e s s , t e n s i o n and l o s s o f c o n t r o l ( G r e e r , D a v i d s o n & G a t c h e l , 1 9 7 0 ) . I t c a n be a s s e s s e d by v e r b a l r e p o r t s , ( K r a u s e , 1961) o r by o b s e r v a t i o n o f i t s p h y s i o l o g i c a l c o r r e l a t e s ( B a r r a t t , 1 9 7 2). P s y c h o l o g i s t s have d e m o n s t r a t e d t h a t a n x i e t y c a n be a l e a r n e d r e s p o n s e (Mowrer, 1 9 3 9 ) . A n x i e t y , when t r i g g e r e d by s t r e s s , t h r e a t o r d a n g e r , i s a p r o t e c t i v e r e s p o n s e ( M i l l e r , 1 9 4 8 ) . I t c a n a c t i v a t e t h e o r g a n i s m t o a h i g h s t a t e o f a u t o n o m i c a r o u s a l ( B a r r a t t , 1 9 7 2 ) . When a n x i e t y i s o u t o f p r o p o r t i o n t o t h e i m m e d i a t e t h r e a t , i t c a n be a p o w e r f u l and p o t e n t i a l l y d i s r u p t i v e f o r c e ( A d l e r , 1 9 5 0 ) . I n many c i r c u m s t a n c e s , a n x i e t y c a n d i s t o r t p e r c e p t i o n and i m p a i r p r o b l e m - s o l v i n g ( S c o t t , 1 9 8 3 ) . A n x i e t y h a s n o t a l w a y s been u n d e r s t o o d i n t h i s m u l t i f a c e t e d manner. F o r F r e u d and t h e p s y c h o a n a l y t i c s c h o o l o f p s y c h o l o g y , a n x i e t y was a p a t h o l o g i c a l c o n d i t i o n , o f t e n t h e r e s u l t o f c h i l d h o o d t r a u m a ( F r e u d , 1 9 3 6 ) . L a t e r t h e o r i s t s , w o r k i n g f r o m t h e r e s p o n s e s o f 24 h e a l t h y p e o p l e d e s c r i b e d " n o r m a l a n x i e t y . " H o r n ey, f o r example, d i s t i n g u i s h e d n o r m a l a n x i e t y a s b e i n g : i m p l i c i t i n t h e human s i t u a t i o n o f c o n t i n g e n c y i n t h e f a c e o f d e a t h . . . . B u t what c h a r a c t e r i z e s a n x i e t y i s t h e f e e l i n g o f d i f f u s e n e s s and u n c e r t a i n t y and t h e e x p e r i e n c e o f h e l p l e s s n e s s t o w a r d t h e t h r e a t . A n x i e t y i s a r e a c t i o n t o a t h r e a t t o s o m e t h i n g b e l o n g i n g t o t h e ' c o r e o r e s s e n c e ' o f t h e p e r s o n a l i t y . I t i s a r e a c t i o n t o a t h r e a t t o some v a l u e w h i c h t h e i n d i v i d u a l h o l d s e s s e n t i a l t o h i s e x i s t e n c e a s a p e r s o n -a l i t y . (May, 1950, p.140) R o l l o May (1950) c a r r i e d t h e " d e - p a t h o l o g i z i n g " p r o c e s s e v e n f u r t h e r and d e s c r i b e d n o r m a l a n x i e t y a s : t h a t r e a c t i o n w h i c h : (1) i s n o t d i s p r o p o r t i o n -a t e t o t h e o b j e c t i v e t h r e a t ; (2) doe s n o t i n v o l v e r e p r e s s i o n o r o t h e r mechanisms o f i n t r a - p s y c h i c c o n f l i c t , and, a s a c o r o l l a r y t o t h e s e c o n d p o i n t ; (3) d o e s n o t r e q u i r e n e u r o t i c d e f e n c e mechanisms f o r i t s manage-ment, b u t c a n be c o n f r o n t e d c o n s t r u c t i v e l y on t h e l e v e l o f c o n s c i o u s a w a r e n e s s o r c a n be r e l i e v e d i f t h e o b j e c t i v e s i t u a t i o n i s a l t e r e d . ( p . 194) P s y c h o l o g i s t s i n t e r e s t e d i n t h e s t u d y o f s t r e s s have d e s c r i b e d e m o t i o n s s u c h a s a n x i e t y a s b a s e d on t h e " a p p r a i s a l o f t h r e a t " ( L a z a r u s & O p t i n , 1966; L a z a r u s & A v e r i l l , 1972; L a z a r u s , 1 9 7 4 ) , e s p e c i a l l y when t h a t a p p r a i s a l e n t a i l s s y m b o l i c , a n t i c i p a t o r y o r o t h e r u n c e r t a i n s t a t e s . K r a u s e (1961) d e v e l o p e d a s e t o f c r i t e r i a f o r what he c a l l e d " t r a n s i t o r y a n x i e t y " w h i c h i n c l u d e d : (1) i n t r o s p e c t i v e v e r b a l r e p o r t s ; (2) p h y s i o l -o g i c a l s i g n s ; (3) m o l a r b e h a v i o u r ( r e s t l e s s n e s s , body p o s t u r e , d i s t o r t i o n s o f s p e e c h ) ; (4) t a s k p e r f o r m a n c e ; (5) c l i n i c a l i n t u i t i o n ; and (6) r e s p o n s e t o s t r e s s . 25 S p i e l b e r g e r (1966, 1972, 1976, 1977) b u i l t on K r a u s e ' s work and d i f f e r e n t i a t e d t r a i t a n x i e t y f r o m s t a t e a n x i e t y . T r a i t a n x i e t y was d e f i n e d by S p i e l b e r g e r (1966) a s : " . . . s t a b l e i n d i v i d u a l d i f f e r e n c e s i n a u n i t a r y , r e l a t i v e l y permanent p e r s o n a l i t y c h a r a c t e r -i s t i c " ( p . 1 3 ) . S t a t e a n x i e t y c a n be r e c o g n i z e d a s : " . . . a t r a n s i t o r y s t a t e o r c o n d i t i o n o f t h e o r g a n i s m w h i c h v a r i e s i n i n t e n s i t y and f l u c t u a t e s o v e r t i m e " < p . l 3 ) . T h i s c o n d i t i o n i s c h a r a c t e r i z e d by s u b j e c t i v e c o n s c i o u s l y p e r c e i v e d f e e l i n g s o f t e n s i o n and a p p r e h e n -s i o n . I n S p i e l b e r g e r ' s t h e o r y , s t a t e a n x i e t y i s u s u a l l y t h e r e s u l t o f t h r e a t , o r t h e p e r c e p t i o n o f t h r e a t w h i c h d i f f e r s f r o m i n d i v i d u a l t o i n d i v i d u a l d e p e n d i n g on p e r s o n a l i t y , d i s p o s i t i o n and p a s t e x p e r i e n c e w i t h s i m i l a r s i t u a t i o n s . H u s t e d and J o h n s o n , <1985) f o u n d t h a t n u r s e s and p a t i e n t s d i f f e r i n t h e i r p e r c e p t i o n s o f a n x i e t y . T h e s e a u t h o r s e x amined t h e p e r c e p t i o n s o f n u r s e s and h o s p i t a l -i z e d o n c o l o g y p a t i e n t s f o r t r a n s i e n t a n x i e t y , d e p r e s s i o n and h o s t i l i t y . T h e i r s a m p l e p o p u l a t i o n was composed o f a mixed g r o u p o f p a t i e n t s r e c e i v i n g t r e a t m e n t f o r a v a r i e t y o f d i a g n o s e s and a t d i f f e r e n t s t a g e s i n t h e i r d i s e a s e p r o c e s s . The i n s t r u m e n t u s e d was t h e M u l t i p l e A d j e c t i v e A f f e c t Check L i s t . The c a r e - g i v e r s a t t r i b u t e d s i g n i f i c a n t l y h i g h e r l e v e l s o f a n x i e t y t o t h e p a t i e n t s t h a n d i d t h e p a t i e n t s t h e m s e l v e s . The r e s e a r c h e r s f o u n d 26 a n e g a t i v e c o r r e l a t i o n w i t h c l i e n t age and c l i e n t r e p o r t o f a n x i e t y . W h i l e t h e r e s u l t s o f t h e s t u d y a r e i n t e r e s t i n g , t h e v a l i d i t y and g e n e r a l i z a b i l i t y o f t h e r e s u l t s a r e q u e s t i o n a b l e b e c a u s e o f a s m a l l s a m ple s i z e . T h e r e i s a v o l u m i n o u s l i t e r a t u r e on t h e s u b j e c t o f a n x i e t y a s a common r e a c t i o n i n c a n c e r p a t i e n t s r e c e i v -i n g r a d i o t h e r a p y (Peck & B o l a n d , 1977; Rotman, e t a l . , 1977; F o r e s t e r , e t a l . , 1 9 7 8 ) . V e t t e s e (1976) acknow-l e d g e s t h a t t h e i n i t i a l p e r i o d o f d i a g n o s i s and t r e a t -ment i s t h e most a n x i e t y - p r o v o k i n g o f a l l p h a s e s i n t h e c a r e e r o f a c a n c e r p a t i e n t . A n x i e t y o c c u r s a t a t i m e when p a t i e n t s must g r a p p l e w i t h a l a r g e volume o f new i n f o r m a t i o n r e l a t e d t o t h e i r d i s e a s e and p r o p o s e d t r e a t m e n t . S i m u l t a n e o u s l y , t h e i n f o r m a t i o n t h a t p a t i e n t s need t o c o p e w i t h t h e t r e a t m e n t p r o c e s s c a n be one o f t h e c a u s e s o f t h e i r a n x i e t y d e p e n d i n g on t h e i r p e r c e p -t i o n o f t h e n a t u r e o f t h a t i n f o r m a t i o n . E f f e c t s o f a n x i e t y . A c c o r d i n g t o W e l c h - M c C a f f r e y ( 1 9 8 5 ) , a n x i e t y i n t e r f e r e s w i t h t h e q u a l i t y o f l i f e o f a c a n c e r p a t i e n t . She d e s c r i b e s a n x i e t y a s a c h r o n i c p e r v a s i v e c o n d i t i o n w h i c h m a n i f e s t s i t s e l f t h r o u g h o u t a l l p h a s e s o f t h e i l l n e s s . She l i s t s numerous s o u r c e s f o r t h i s u n s e t t l i n g e m o t i o n s u c h a s : t h e d i a g n o s i s i t s e l f ; c hange i n b i o -p s y c h o l o g i c a l c o n d i t i o n ; l i f e - s t y l e a l t e r a t i o n s ; d e p e n d e n c e on h e a l t h p r o f e s s i o n a l s ; and t r e a t m e n t s . 27 The symptoms o f a n x i e t y c a n r a n g e f r o m o b j e c t i v e b e h a v i o r s and s i g n s t o s u b j e c t i v e c o n d i t i o n s . W i l s o n and K n e i s e l (1979) d i v i d e t h e e f f e c t s o f a n x i e t y i n t o t h r e e c a t e g o r i e s — p h y s i o l o g i c a l ( i n c r e a s e d h e a r t r a t e , e l e v a t e d b l o o d p r e s s u r e , t i g h t n e s s o f c h e s t , d i f f i c u l t y i n b r e a t h i n g , s w e aty p a l m s , h e a d a c h e , n a u s e a a n d / o r v o m i t i n g , c o n s t a n t s t a t e o f f a t i g u e , a n o r e x i a , d i a r r h e a , u r i n a r y f r e q u e n c y , and s l e e p d i s t u r b a n c e ) ; e m o t i o n a l ( i r r i t a b i l i t y , r e s t l e s s n e s s , and d i m i n i s h e d i n i t i a t i v e ) , and i n t e l l e c t u a l ( f o r g e t f u l n e s s , p r e o c c u p a t i o n , r u m i n a -t i o n , l a c k o f c o n c e n t r a t i o n , l a c k o f a t t e n t i o n t o d e t a i l s , and d i m i n i s h e d p r o d u c t i v i t y ) . Dodd (1982b) o b s e r v e d t h a t c a n c e r p a t i e n t s i n a p p r o -p r i a t e l y a t t r i b u t e d s u c h symptoms a s n e r v o u s n e s s , i r r i t a b i l i t y , i n s o m n i a , and numbness and t i n g l i n g o f hands and f e e t t o t h e s i d e e f f e c t s o f c h e m o t h e r a p y . She c o n c l u d e d t h a t t h e s e symptoms a r e n o t u n l i k e t h o s e a t t r i b u t e d t o a n x i e t y by many r e s e a r c h e r s . Measurement o f a n x i e t y . The most commonly-used measure o f a n x i e t y a t t h e p r e s e n t t i m e i s a s e l f - r e p o r t q u e s t i o n n a i r e b a s e d on S p i e l b e r g e r ' s S t a t e / T r a i t a n x i e t y t h e o r y , t h e S t a t e -T r a i t A n x i e t y I n v e n t o r y [STAI3 ( S p i e l b e r g e r , G o r s u c h , and L u s h e n e , 1 9 7 0 ) . I t h a s been u s e d e x t e n s i v e l y . I n 1984, S p i e l b e r g e r p u b l i s h e d a c o m p r e h e n s i v e b i b l i o g r a p h y o f s t u d i e s i n w h i c h t h e STAI had been u s e d . I t has been 28 u s e d t o a s s e s s a n x i e t y i n many m e d i c a l a r e a s s u c h a s c o r o n a r y d i s e a s e , h y p e r t e n s i o n , d i a b e t e s , s p i n a l c o r d i n j u r i e s , p s y c h i a t r y , s u r g e r y , o b s t e t r i c s , g y n e c o l o g y , p s y c h o s o m a t i c c o n d i t i o n s . F i f t e e n c a n c e r s t u d i e s have u s e d t h e STAI and 80% o f t h e s e were p u b l i s h e d i n 1979 o r l a t e r . The s t u d i e s have i n c l u d e d s u c h a r e a s a s : d e c r e a s i n g a n x i e t y i n mastectomy p a t i e n t s (Baum & J o n e s , 1978); t r e a t m e n t o f i n s o m n i a ( C a n n i c i , 1980); t r e a t i n g a n t i c i p a t o r y n a u s e a and v o m i t i n g (Morrow & M o r r e l l , 1982); t h e u s e o f m o d e l l i n g i n r e d u c i n g s i t u a t i o n a l a n x i e t y a r i s i n g f r o m p r o c e d u r e s ( S t r n a d , 1977); i d e n t i -f y i n g t h e p s y c h o l o g y o f r a d i o t h e r a p y p a t i e n t s ( B e r n a y , 1976); i d e n t i f y i n g d e m o g r a p h i c v a r i a b l e s a s s o c i a t e d w i t h p a r t i c i p a t i o n i n b r e a s t s c r e e n i n g p r o g r a m s ( K i n , 1 9 8 1 ) ; d e t e r m i n i n g l e v e l s o f s t r e s s and t h e i r r e l a t i o n s h i p t o t h e i n c i d e n c e o f c a n c e r (Lawson, 19 8 1 ) ; e m o t i o n a l r e s p o n s e s o f p e d i a t r i c p a t i e n t s t o h o s p i t a l i z a t i o n (Powazek, G o f f , S c h y v i n g & P a u l s o n , 1978); and i d e n t i f y -i n g p a t t e r n s o f e x p r e s s i o n o f a n g e r i n b r e a s t c a n c e r ( M o r r i s , G r e e r , P e t t i n g a l e & Watson, 1981). Summary C a n c e r and i t s t r e a t m e n t s t h r e a t e n b o t h t h e b i o l o g i c a l and p s y c h o l o g i c a l i n t e g r i t y o f i n d i v i d u a l s . The l i t e r a t u r e i n d i c a t e s t h a t d i a g n o s e d p a t i e n t s c a n be h e l p e d t o cop e w i t h t h e a n x i e t y and u n c e r t a i n t i e s t h a t t h e d i s e a s e b r i n g s by t h e u s e o f a f f e c t i v e and c o g n i t i v e 29 i n t e r v e n t i o n s . The l i t e r a t u r e l e a v e s many q u e s t i o n s unanswered a s t o how n u r s e s c a n a s s e s s what k i n d s o f h e a l t h c a r e i n t e r v e n t i o n s i n d i v i d u a l p a t i e n t s p r e f e r . Do t h e y p r e f e r c o g n i t i v e i n t e r v e n t i o n s w h i c h add t o t h e i r k n owledge and h e l p t o f a m i l i a r i z e them w i t h t h e d i s e a s e and i t s t r e a t m e n t s o r a f f e c t i v e ( s u p p o r t i v e ) i n t e r v e n -t i o n s w h i c h h e l p them t o manage t h e i r i n t e r n a l e n v i r o n -ment? B o t h t y p e s o f i n t e r v e n t i o n may h e l p t o r e d u c e a n x i e t y . The c e n t r a l i s s u e i s 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 l a c k v a l i d and r e l i a b l e i n f o r m a t i o n a b o u t p a t i e n t s ' p r e f e r e n c e s . A p a r t i a l s o l u t i o n t o t h i s dilemma l i e s i n s t u d i e s d e s i g n e d t o i d e n t i f y p a t i e n t s ' p r e f e r e n c e s f o r h e a l t h c a r e i n t e r v e n t i o n s i n a v a r i e t y o f c l i n i c a l s i t u a t i o n s t a k i n g i n t o a c c o u n t t h e i n f l u e n c e o f a n x i e t y and s e l e c t e d d e m o g r a p h i c c h a r a c t e r i s t i c s . T h i s s t u d y i s d e s i g n e d t o a d d r e s s t h e p r o b l e m a s i t r e l a t e s t o a p a r t i c u l a r g r o u p o f c a n c e r p a t i e n t s i n t h e hope t h a t n u r s e s c a n be h e l p e d t o i n t e r v e n e more e f f e c t i v e l y . 30 CHAPTER 3 METHODOLOGY T h i s s t u d y was u n d e r t a k e n t o : a) d e s c r i b e h e a l t h c a r e p r e f e r e n c e s among c a n c e r p a t i e n t s r e c e i v i n g r a d i o t h e r a p y f o r t h e f i r s t t i m e ; b) examine t h e i n f l u -e n c e o f s e l e c t e d d e m o g r a p h i c v a r i a b l e s on p a t i e n t s ' h e a l t h c a r e p r e f e r e n c e s ; and c) examine t h e r e l a t i o n s h i p between p a t i e n t s ' s c o r e s on a s t a n d a r d i z e d a n x i e t y t e s t and t h e i r h e a l t h c a r e p r e f e r e n c e s . I n t h i s c h a p t e r , t h e r e s e a r c h e r w i l l d e s c r i b e t h e i n s t r u m e n t s u s e d t o c o l l e c t t h e d a t a , t h e s e t t i n g f o r t h e s t u d y , t h e c h a r a c t e r i s t i c s o f t h e sample p o p u l a t i o n , t h e d a t a c o l l e c t i o n p r o c e s s and t h e d a t a a n a l y s i s . I n s t r u m e n t s and I n s t r u m e n t D evelopment The f o l l o w i n g i n s t r u m e n t s were u s e d i n t h e s t u d y : a Demo g r a p h i c Q u e s t i o n n a i r e , t h e H e a l t h C a r e P r e f e r e n c e S u r v e y , and t h e S t a t e - T r a i t A n x i e t y I n v e n t o r y . E a c h w i l l be d i s c u s s e d i n some d e t a i l . D e m o g r a p h i c q u e s t i o n n a i r e . T h i s i n s t r u m e n t , a co p y o f w h i c h i s p r e s e n t e d i n A p p e n d i x A, was o r i g i n a l l y d e v i s e d by Dodd <1982a). The s c h e d u l e i n c l u d e s s u c h d e m o g r a p h i c and t r e a t m e n t v a r i a b l e s a s age, s e x , m a r i t a l s t a t u s , e t h n i c g r o u p , d i a g n o s i s , d i s e a s e s i t e , r a d i a t i o n d o s a g e , n a t u r e o f t r e a t m e n t , p e r f o r m a n c e s t a t u s a s measured on t h e K a r n o f s k y p e r f o r m a n c e s t a t u s s c a l e , a l s o i n c l u d e d i n 31 A p p e n d i x A, and number o f r a d i o t h e r a p y t r e a t m e n t s , a l l o b t a i n a b l e f r o m t h e m e d i c a l r e c o r d o r , a s i n p e r f o r m a n c e s t a t u s , d i r e c t l y r a t a b l e . I n a d d i t i o n , t h e s u b j e c t s were a s k e d t o c o m p l e t e a b a c k g r o u n d i n f o r m a t i o n s h e e t l i s t i n g l e v e l o f e d u c a t i o n and o c c u p a t i o n , n e i t h e r o f w h i c h was o t h e r w i s e a v a i l a b l e . H e a l t h C a r e P r e f e r e n c e S u r v e y CHCPS]. The HCPS ( s e e A p p e n d i x B) was o r i g i n a l l y d e v i s e d by Mood ( 1 9 8 2 ) . Her i n t e n t i o n was t o c r e a t e a c l i n i c a l l y r e l e v a n t s c r e e n i n g and a s s e s s m e n t t o o l f o r h e a l t h e d u c a t o r s . The HCPS was d e s i g n e d t o answer t h e q u e s t i o n : Do p a t i e n t s want a f f e c t i v e o r c o g n i t i v e i n t e r v e n t i o n s a t v a r i o u s p o i n t s i n t h e d i a g n o s i s and t r e a t m e n t p r o c e s s ? The s u r v e y i s a s e v e n i t e m f o r c e d - c h o i c e q u e s t i o n n a i r e t h a t i s c o m p l e t e d by t h e s u b j e c t . E a c h i t e m c o n s i s t s o f a c l i n i c a l v i g n e t t e d e s c r i b i n g t y p i c a l e n c o u n t e r s t h a t a p a t i e n t m i g h t have d u r i n g t h e c o u r s e o f d i a g n o s i s and t r e a t m e n t . Two a l t e r n a t i v e r e s p o n s e s a r e o f f e r e d ; one i n c l u d e s a c o g n i t i v e i n t e r v e n t i o n on t h e p a r t o f a h e a l t h c a r e w o r k e r and t h e o t h e r , an a f f e c t i v e i n t e r -v e n t i o n . The s u b j e c t i s a s k e d t o i n d i c a t e a p r e f e r e n c e f o r one o f t h e two. The HCPS was m o d i f i e d by t h i s r e s e a r c h e r w i t h Mood's p e r m i s s i o n and a s s i s t a n c e . The m o d i f i c a t i o n s c o n s i s t e d o f d e l e t i n g any s p e c i f i c r e f e r e n c e t o t h e g e n d e r o f t h e h e a l t h c a r e p r o v i d e r and r e w o r d i n g Items 32 3, 4, and 5 f o r c l a r i t y o f e x p r e s s i o n . The c o n t e n t o f t h e i t e m s was n o t a l t e r e d . The i n s t r u m e n t i s s c o r e d by a s s i g n i n g 0 t o a r e s p o n s e w h i c h d e s c r i b e s an a f f e c t i v e i n t e r v e n t i o n and 1 t o t h e r e s p o n s e w h i c h d e s c r i b e s a c o g n i t i v e i n t e r v e n t -i o n . As t h e r e a r e s e v e n i t e m s , t h e p o s s i b l e s c o r e s r a n g e f r o m z e r o , i n d i c a t i n g s e v e n c h o i c e s o f an a f f e c t -i v e o p t i o n , t o s e v e n , i n d i c a t i n g s e v e n c h o i c e s f o r i n f o r m a t i o n . S c o r e s between t h e e x t r e m e s c a n be i n t e r p r e t e d a s e i t h e r a m o d e r a t e o v e r a l l p r e f e r e n c e f o r c o g n i t i v e o r f o r a f f e c t i v e i n t e r v e n t i o n s , o r a s a p r e f e r e n c e f o r i n f o r m a t i o n a t some t i m e s and f o r e m o t i o n a l s u p p o r t a t o t h e r t i m e s , d e p e n d i n g on t h e s p e c i f i c i t e m s c h o s e n . I n c l u d e d i n t h e HCPS i s a c o n c u r r e n t v a l i d i t y i t e m i n w h i c h t h e s u b j e c t i s a s k e d t o c h o o s e one o f t h r e e t y p e s o f c a r e t h a t h e / s h e would f i n d most h e l p f u l i n a d d i t i o n t o t h e m e d i c a l t r e a t m e n t --an i n f o r m a t i o n / e d u c a t i o n o p t i o n , an e m o t i o n a l s u p p o r t o p t i o n and a s e l f - c a r e o p t i o n . S t a t e - T r a i t A n x i e t y I n v e n t o r y C STAI]. The STAI was d e v e l o p e d by S p i e l b e r g e r t o a s s e s s f e e l i n g s o f a p p r e h e n s i o n , t e n s i o n , n e r v o u s n e s s and w o r r y . A c o p y o f t h e I n v e n t o r y i s a v a i l a b l e f r o m t h e p u b l i s h e r ( C o n s u l t i n g P s y c h o l o g i s t s P r e s s , 577 C o l l e g e Avenue, P a l o A l t o , C a l i f o r n i a 9 4 3 0 6 ) . I t h a s been u s e d 33 e x t e n s i v e l y s i n c e i t s d e v e l o p m e n t i n 1964 and underwent a m a j o r r e v i s i o n i n 1976 ( S p i e l b e r g e r , 1 9 8 3 ) . The I n v e n t o r y c o n s i s t s o f 2 s c a l e s o f 20 s t a t e m e n t s e a c h . The s u b j e c t i s a s k e d t o r a t e t h e s t a t e m e n t s a c c o r d i n g t o how h e / s h e f e e l s r i g h t now ( S t a t e s c a l e ) and t h e n t o r a t e t h e o t h e r 20 s t a t e m e n t s a c c o r d i n g t o how h e / s h e g e n e r a l l y f e e l s ( T r a i t s c a l e ) . A n u m e r i c a l s c o r e i s c o n s t r u c t e d f r o m t h e w e i g h t e d s c o r e o f 1-4 a s s i g n e d t o e a c h r e s p o n s e . A r a t i n g o f 1 i n d i c a t e s a low l e v e l o f a n x i e t y and 4 t h e p r e s e n c e o f a h i g h l e v e l o f a n x i e t y . The r a n g e o f p o s s i b l e s c o r e s i s f r o m 20 t o 80. S p i e l b e r g e r (1983) r e p o r t s t h a t w o r k i n g a d u l t s i n a n o n - s t r e s s f u l s i t u a t i o n have mean S t a t e a n x i e t y s c o r e s i n t h e r a n g e o f 32.20 t o 36.54 w h i l e t h e T r a i t a n x i e t y s c o r e s a r e i n t h e r a n g e o f 31.79 t o 36.75. I n b o t h c a s e s , o l d e r s u b j e c t s have l o w e r mean s c o r e s and s u b j e c t s u n d e r s t r e s s , w h e t h e r f r o m m e d i c a l o r s u r g i c a l t r e a t m e n t , o r d i a g n o s e d w i t h a n x i e t y r e a c t i o n s , have much h i g h e r mean s c o r e s . S e t t i n g The s t u d y t o o k p l a c e i n V a n c o u v e r , B.C. i n an o u t p a t i e n t r a d i o t h e r a p y d e p a r t m e n t o f t h e A. M a x w e l l E v a n s C l i n i c CAMEC3 o f t h e C a n c e r C o n t r o l Agency o f B.C. CCCABC]. T h i s f a c i l i t y t r e a t s o v e r 400 r a d i o t h e r a p y p a t i e n t s m o n t h l y and i s t h e p r i m a r y r a d i o t h e r a p y c e n t e r f o r t h e p r o v i n c e o f B.C. I t s e r v e s a h e t e r o g e n o u s , 34 m u l t i c u l t u r a l u r b a n p o p u l a t i o n and i s t h e r e f e r r a l f a c i l i t y f o r t h e m a i n l a n d o f t h e p r o v i n c e a s w e l l a s t h e Yukon and N o r t h w e s t T e r r i t o r i e s . Subiect3 The s u b j e c t s f o r t h i s s t u d y were c a n c e r p a t i e n t s r e c e i v i n g r a d i o t h e r a p y f o r t h e f i r s t t i m e . They had no p r e v i o u s e x p e r i e n c e w i t h o t h e r c a n c e r t r e a t m e n t modal-i t i e s w i t h t h e e x c e p t i o n o f s u r g e r y . They were s e l e c t e d a c c o r d i n g t o t h e f o l l o w i n g c r i t e r i a : 1) a b l e t o g i v e l e g a l c o n s e n t 2) d i a g n o s e d a s h a v i n g c a n c e r 3) a b l e t o r e a d and w r i t e t h e E n g l i s h l a n g u a g e 4) p h y s i c a l l y a b l e t o p a r t i c i p a t e 5) r e c e i v i n g r a d i o t h e r a p y f o r t h e f i r s t t i m e a s a p r i m a r y t r e a t m e n t o r a d j u n c t i v e t o s u r g e r y 6) n o t on m e d i c a t i o n w h i c h c o u l d a f f e c t a n x i e t y l e v e l s , i . e . , m a j o r o r m i n o r t r a n q u i l i z e r s o r s t e r o i d s 7) w i t h i n t h e f i r s t week o f t r e a t m e n t . The f i r s t s i x c r i t e r i a were t h o s e u s e d by Dodd (1985) i n h e r s t u d y o f h e a l t h c a r e p r e f e r e n c e s . The s e v e n t h c r i t e r i o n was added on t h e p r i n c i p l e t h a t s i d e e f f e c t s o f t r e a t m e n t , w h i c h become more s e v e r e a f t e r t h e f i r s t week, m i g h t c o n f o u n d t h e d a t a . The s u b j e c t s were a p p r o a c h e d i n p e r s o n by t h e r e s e a r c h e r d u r i n g t h e i r s e c o n d o r t h i r d a p p o i n t m e n t a f t e r r e f e r r a l t o t h e AMEC. The s u b j e c t s who were a p p r o a c h e d r e p r e s e n t e d a s m a l l f r a c t i o n o f a l l p o s s i b l e r a d i o t h e r a p y p a t i e n t s . P o t e n t i a l s u b j e c t s were s c r e e n e d 35 and r e j e c t e d i f t h e i r a p p o i n t m e n t s d i d n o t c o i n c i d e w i t h t h e r e s e a r c h e r ' s a v a i l a b i l i t y a n d / o r t h e y f a i l e d t o meet one o r more o f t h e s e v e n c r i t e r i a . O n l y a few ( f i v e ) r e f u s e d t o p a r t i c i p a t e i n t h e s t u d y when a p p r o a c h e d and two e i t h e r d i d n o t c o m p l e t e t h e q u e s t i o n n a i r e s o r f i l l e d them o u t s o i n c o m p l e t e l y t h a t t h e r e s u l t s had t o be d i s c a r d e d . F o u r h u n d r e d p a t i e n t s were t r e a t e d w i t h r a d i o t h e r a p y d u r i n g t h e p e r i o d f r o m J a n u a r y 14, 1985 t o F e b r u a r y 14, 1985 and 40 s u b j e c t s were o b t a i n e d f o r t h e s t u d y . The s a m ple p o p u l a t i o n i s n e i t h e r random n o r c o m p l e t e l y r e p r e s e n t a t i v e — i t i s a sample o f c o n v e n -i e n c e . I f t h i s were a l a r g e r s t u d y , aimed a t c o n f i r m i n g o r r e j e c t i n g some e x p e r i m e n t a l h y p o t h e s i s , t h e n a t u r e o f t h e sample m i g h t q u a l i f y t h e c o n c l u s i o n s o r r e n d e r them i n v a l i d ( A b d e l l a h & L e v i n e , 1 9 6 5 ) . T h i s i s , however, an e x p l o r a t o r y s t u d y and i t s a i m s a r e t o d i s c o v e r w hether r e l a t i o n s h i p s e x i s t between t h e v a r i a b l e s u n d e r s t u d y and t o d e s c r i b e t h e comments and p r e f e r e n c e s o f t h e s u b j e c t s . P h i l l i p s (1971) h a s s a i d a b o u t t h i s s o r t o f s t u d y t h a t : I f t h e d e f i n i t i o n o f t h e p r o b l e m e m p h a s i z e s t h e c o n t e x t o f d i s c o v e r y , a s u p e r i o r s t r a t e g y ( t o a random sample) f o r a g i v e n p r o b l e m m i g h t be t o s e c u r e d e t a i l e d d a t a on a n o n - p r o b a b i l -i t y s a m p l e . (p. 95) Human R i g h t s and E t h i c s 36 The s u b j e c t s were c o n t a c t e d by t h e r e s e a r c h e r i n p e r s o n d u r i n g t h e i r s e c o n d o r t h i r d c l i n i c a p p o i n t m e n t a t t h e AMEC. The p u r p o s e o f t h e s t u d y was e x p l a i n e d t o them and t h e y were a s k e d t o p a r t i c i p a t e . E a c h s u b j e c t was i n f o r m e d v e r b a l l y and t h r o u g h a l e t t e r o f i n t r o d u c t -i o n ( s e e A p p e n d i x C) t h a t p a r t i c i p a t i o n was v o l u n t a r y . The s u b j e c t s were g i v e n t h e l e t t e r and a p a t i e n t i n f o r m a t i o n s h e e t ( s e e A p p e n d i x D> t o t a k e home f o r t h e i r c o n s i d e r a t i o n . They were p e r s o n a l l y c o n t a c t e d a g a i n t h e n e x t day t o o b t a i n w r i t t e n c o n s e n t and t o c o m p l e t e t h e q u e s t i o n n a i r e s . D a t a C o l l e c t i o n The s u b j e c t s c o m p l e t e d t h e q u e s t i o n n a i r e s i n a v a r i e t y o f p l a c e s i n c l u d i n g t h e w a i t i n g rooms o f t h e AMEC r a d i o t h e r a p y d e p a r t m e n t and a t t h e i r homes (two s u b j e c t s ) . The m a j o r i t y o f t h e p a t i e n t s f i l l e d them o u t a f t e r c o m p l e t i n g t h e i r r a d i o t h e r a p y t r e a t m e n t f o r t h e day. I n a l l c a s e s , e x c e p t t h o s e who t o o k t h e q u e s t i o n -n a i r e s home, t h e r e s e a r c h e r was p r e s e n t w h i l e t h e f o r m s were c o m p l e t e d . Many s u b j e c t s s p e n t a g r e a t amount o f t i m e t r y i n g t o c l a r i f y and e x p l a i n t h e i r r e s p o n s e s t o t h e r e -s e a r c h e r . W i t h few e x c e p t i o n s , t h e s u b j e c t s were e a g e r and wanted t o t a l k t o t h e r e s e a r c h e r a b o u t t h e i r e x p e r i e n c e s and f e e l i n g s . The r e s e a r c h e r l i s t e n e d c a r e f u l l y t o t h e i r comments and t r i e d t o answer t h e i r 37 q u e s t i o n s where i t was p o s s i b l e t o do s o w i t h o u t c o m p r o m i s i n g t h e r e s p o n s e s t o t h e i n s t r u m e n t s . The c o n t e n t o f t h e s e d i s c u s s i o n s was r e c o r d e d and w i l l be r e p o r t e d a s i n c i d e n t a l d a t a . The r e s e a r c h e r c o d e d t h e q u e s t i o n n a i r e s and removed a l l p e r s o n a l i d e n t i f i e r s f r o m them t o p r e s e r v e t h e p a t i e n t s ' a n o n y m i t y . S u b j e c t s ' names and a d d r e s s e s were k e p t s e p a r a t e f r o m t h e d a t a p r o p e r s o t h a t t h e y c o u l d be s e n t an a b s t r a c t o f t h e r e s u l t s . D a t a A n a l y s i s The a n a l y s i s p r o c e e d e d a c c o r d i n g t o t h e t h r e e o b j e c t i v e s o f t h e s t u d y . D T h e HCPS was s c o r e d t o d e t e r m i n e t h e s u b j e c t s ' h e a l t h c a r e p r e f e r e n c e s . 2 ) T h e r e l a t i o n s h i p o f t h e s e v e r a l d e m o g r a p h i c v a r i a b l e s t o s c o r e s on t h e HCPS was e x amined on an i t e m - b y - i t e m and o v e r a l l s c o r e b a s i s . 3 ) S T A I s c o r e s were examined i n r e l a t i o n s h i p t o HCPS s c o r e s t o a s c e r t a i n t h e i r d e g r e e o f a s s o c i a t i o n . The d a t a f r o m t h e q u e s t i o n n a i r e s were c o m p i l e d u s i n g t h e L o t u s 1-2-3 ( C o p y r i g h t L o t u s D e velopment C o r p o r a t i o n , 1983) c o mputer p r o g r a m . The d a t a s o r t i n g and s t a t i s t i c a l f u n c t i o n s o f t h e program were u s e d t o c a l c u l a t e t h e means and s t a n d a r d d e v i a t i o n s o f t h e v a r i a b l e s s t u d i e d f o r t h e whole sample and f o r v a r i o u s s u b - g r o u p s a s w e l l a s f o r a l l o t h e r c a l c u l a t i o n s . 38 The s t a t i s t i c a l t e s t s u s e d depended on t h e t y p e o f d a t a a v a i l a b l e and on t h e way(s) i t was a s s i g n e d t o d i f f e r e n t c a t e g o r i e s . Many o f t h e d a t a c o l l e c t e d were n o m i n a l i n t h a t t h e y c o u l d be a s s i g n e d t o d i f f e r e n t c a t e g o r i e s b u t no v a l u e o r r a n k c o u l d be g i v e n t o t h e d i f f e r e n t g r o u p s . Some ex a m p l e s o f n o m i n a l d a t a i n c l u d e d s e x , d i s e a s e s i t e , home r e g i o n , o c c u p a t i o n , e t h n i c g r o u p , and m a r i t a l s t a t u s . O t h e r d a t a c o l l e c t e d c o u l d be c a l l e d o r d i n a l i n t h a t s u b j e c t s c o u l d be r a n k e d a s t o t h e number o f t r e a t m e n t s t h e y had r e c e i v e d o r number o f i n f o r m a t i o n c h o i c e s made on t h e HCPS. Some o f t h e d a t a c o u l d be c a l l e d i n t e r v a l d a t a b e c a u s e t h e s u b j e c t s were n o t o n l y r a n k a b l e , b u t t h e d i f f e r e n c e s i n r a n k r e p r e -s e n t e d known d i f f e r e n c e s i n some e x t e r n a l measure s u c h a s y e a r s o f e d u c a t i o n , age, o r s c o r e on t h e S T A I . F o r t h e p u r p o s e s o f t h i s s t u d y and t h e s t a t i s t i c a l m a n i p u l a t i o n s c a r r i e d o u t a l l i n t e r v a l d a t a a r e t r e a t e d a s i f t h e y were o r d i n a l . Some power i s l o s t t h r o u g h t h e u s e o f n o n - p a r a m e t r i c t e s t s , b u t t h e l o s s i s more t h a n c o m p e n s a t e d f o r by t h e r e d u c e d s a mple s i z e r e q u i r e m e n t s , and t h e i n d e p e n d e n c e o f t h e r e s u l t i n g p r o b a b i l i t i e s f r o m t h e s h a p e o f t h e p o p u l a t i o n d i s t r i b u t i o n . Fewer u n w a r r a n t a b l e a s s u m p t i o n s need t o be made a b o u t t h e p o p u l a t i o n s i n v o l v e d and t h e r e l a t i o n s h i p s between them. F i v e d i f f e r e n t s i t u a t i o n s a r o s e i n t h e e x a m i n a t i o n o f r e l a t i o n s h i p s between d i f f e r e n t t y p e s o f d a t a . E a c h 39 s i t u a t i o n c a l l e d f o r a d i f f e r e n t s t a t i s t i c a l t e s t : 1) Where a r e l a t i o n s h i p between two s e t s o f d i c h o t o m o u s l y g r o u p e d d a t a was t o be examined, t h e c h i - s q u a r e t e s t f o r two i n d e p e n d e n t s a m p l e s ( S i e g e l , 1956 p 104-111) was c a r r i e d o u t ; 2) Where one o f t h e d a t a s e t s i n c l u d e d more t h a n two c a t e g o r i e s , t h e c h i - s q u a r e t e s t f o r 'k' i n d e p e n d e n t s a m p l e s ( S i e g e l , 1956 p 175-179) was u s e d ; 3) Where one o f t h e d a t a s e t s c o u l d be t r e a t e d a s two i n d e p e n d e n t s a m p l e s and t h e o t h e r was r a n k a b l e , t h e Mann- W h i t n e y U t e s t was u s e d t o f i n d t h e s t r e n g t h o f t h e r e l a t i o n s h i p ; 4) Where one o f t h e d a t a s e t s i n c l u d e d s e v e r a l d i f f e r e n t c l a s s e s and t h e o t h e r was r a n k a b l e , t h e K r u s k a l - W a l l i s one-way a n a l y s i s o f v a r i a n c e ( S i e g e l , 1956 p 184-193) was u s e d ; 5) Where b o t h c l a s s e s o f d a t a were a t l e a s t r a n k a b l e , t h e Spearman r a n k c o r r e l a t i o n c o e f f i c i e n t ( H o p k i n s and G l a s s , 1978, p 117-119) was computed. 40 CHAPTER 4 PRESENTATION AND DISCUSSION OF RESULTS Int.roduct.ion The r e s u l t s o f t h e s t u d y a r e r e p o r t e d and d i s c u s s e d i n f i v e s e c t i o n s . The i n i t i a l s e c t i o n i s a d e t a i l e d d e s c r i p t i o n o f t h e s a m p l e . The n e x t t h r e e s e c t i o n s c o r r e s p o n d t o t h e t h r e e r e s e a r c h q u e s t i o n s . S e c t i o n 2 i n c l u d e s a p r e s e n t a t i o n and d i s c u s s i o n o f t h e r e s p o n s e s t o t h e H e a l t h C a r e P r e f e r e n c e S u r v e y . I n S e c t i o n 3 t h e r e l a t i o n s h i p s between s c o r e s on t h e H e a l t h C a r e P r e f e r -e n c e S u r v e y a s a whole and on s e p a r a t e i t e m s and t h e d e m o g r a p h i c v a r i a b l e s a r e p r e s e n t e d and d i s c u s s e d . S i m i l a r l y , i n S e c t i o n 4 t h e a s s o c i a t i o n s between s c o r e s on t h e H e a l t h C a r e P r e f e r e n c e S u r v e y and S t a t e - T r a i t A n x i e t y I n v e n t o r y s c o r e s a r e d e s c r i b e d and d i s c u s s e d . O t h e r f i n d i n g s o f t h e s t u d y a r e p r e s e n t e d and d i s c u s s e d i n S e c t i o n 5 . S e c t i o n 1 - The Sample F o r t y o u t p a t i e n t s c o m p l e t e d t h e d a t a - g a t h e r i n g i n s t r u m e n t s . A l l were newly d i a g n o s e d c a n c e r p a t i e n t s who were r e c e i v i n g r a d i o t h e r a p y f o r t h e f i r s t t i m e . I n a d d i t i o n t o t h e i n s t r u m e n t s c o m p l e t e d by t h e s u b j e c t s t h e m s e l v e s , t h e r e s e a r c h e r c o l l e c t e d t h e f o l l o w i n g d e m o g r a p h i c i n f o r m a t i o n f r o m t h e i r m e d i c a l r e c o r d s : age, s e x , m a r i t a l s t a t u s , e d u c a t i o n , e t h n i c i t y , o c c u p a t i o n , home town, p e r f o r m a n c e s t a t u s a s measured on t h e K a r n o f s k y s c a l e , d i s e a s e s i t e , numbers o f r a d i o t h e r a p y t r e a t m e n t s , and n a t u r e o f t r e a t m e n t . I t s h o u l d be n o t e d a g a i n t h a t t h e s u b j e c t s c o n s t i t u t e d a sample o f c o n v e n -i e n c e and were n o t c h o s e n t o be r e p r e s e n t a t i v e o f t h e p o p u l a t i o n o f c a n c e r p a t i e n t s i n B.C. Age and s e x . The s a m p l e i n c l u d e d 19 men and 21 women. The age r a n g e was f r o m 36 t o 79 y e a r s w i t h a mean o f 61, and b o t h t h e median and mode were 64 y e a r s . Hen t e n d e d t o be somewhat y o u n g e r (M - 59.7) and women somewhat o l d e r (M = 6 2 . 1 ) , b u t t h e medians f o r t h e two g r o u p s were s i m i l a r and t h e d i f f e r e n c e was n o t s t a t i s t i c a l l y s i g n i f i c a n t . C o m p l e t e d a t a on t h e age and s e x o f p a r t i c i p a n t s a r e p r e s e n t e d i n T a b l e I . M a r i t a l s t a t u s . M a r i t a l s t a t u s i s d e s i g n a t e d a s m a r r i e d and n o t now m a r r i e d . The l a t t e r g r o u p i n c l u d e s i n c l u d e s t h o s e who were widowed, d i v o r c e d , s e p a r a t e d o r n e v e r m a r r i e d . More t h a n o n e - h a l f o f a l l o f t h e s u b j e c t s were m a r r i e d w i t h t h e r a t i o s o f m a r r i e d t o n o t m a r r i e d s i m i l a r f o r men and women. A summary o f s e x and m a r i t a l s t a t u s f o r t h e s a mple i s shown i n T a b l e I I . E d u c a t i o n a l l e v e l s . Most o f t h e s u b j e c t s had 12 o r more y e a r s o f s c h o o l i n g . The r a n g e was f r o m 8 t o 20 y e a r s w i t h mode and median o f 9 and 12 y e a r s , r e s p e c t i v e l y . Women had 42 T a b l e I D l a t r i b u t i o n o f S u b i e c t s by Age and Sex Age Men Women T o t a l 35-39 2 0 2 40-44 2 1 3 45-49 0 2 2 50-54 1 1 2 55-59 2 4 6 60-64 3 6 9 65-69 6 1 7 70-74 1 5 6 75-79 2 1 3 19 21 40 T a b l e I I M a r i t a l S t a t u s Not Now M a r r i e d M a r r i e d T o t a l Men 12 7 19 Women 12 9 21 T o t a l 24 16 40 s l i g h t l y more y e a r s o f f o r m a l e d u c a t i o n <M = 11.90 v s M = 11.32) b u t t h e d i f f e r e n c e was n o t s i g n i f i c a n t . The d a t a a r e summarized i n T a b l e I I I . 43 T a b l e I I I E d u c a t i o n a l L e v e l s Y e a r s o f E d u c a t i o n Men Women T o t a l 0-8 4 5 9 9-10 4 2 6 11-12 7 6 13 13-14 2 5 7 15 + 2 3 5 19 21 40 E t h n i c i t y . O n l y 35 o f t h e 40 s u b j e c t s i n d i c a t e d an e t h n i c b a c k g r o u n d on t h e i r a d m i s s i o n s h e e t . The sample d i v i d e d i n t o two g r o u p s w i t h t h o s e c l a i m i n g a B r i t i s h b a c k g r o u n d f o r m i n g one g r o u p <n = 20) and t h o s e w i t h o t h e r b a c k -g r o u n d s t h e o t h e r g r o u p (n = 1 5 ) . The p a t i e n t s i n c l u d e d i n t h e o t h e r g r o u p i n c l u d e d many o t h e r E u r o p e a n b a c k -g r o u n d s . T h e r e were no A s i a n , A f r i c a n o r L a t i n A m e r i c a n p a t i e n t s i n t h e s a m p l e . O c c u p a t i o n . The m a j o r i t y o f t h e s u b j e c t s i n d i c a t e d t h a t t h e y were r e t i r e d a t t h e t i m e o f t h e s t u d y a l t h o u g h t h e y had p r e v i o u s l y h e l d a v a r i e t y o f o c c u p a t i o n s s u c h a s n u r s e , a c c o u n t a n t , t e a c h e r o r r a n c h e r . The o c c u p a t i o n s w h i c h t h e y p r e v i o u s l y o r c u r r e n t l y p r a c t i c e d were g r o u p e d i n t o 44 c a t e g o r i e s by the r e s e a r c h e r f o r convenience. The summary of o c c u p a t i o n a l groupings i s presented i n Table IV. Table IV Occupation O c c u p a t i o n a l Group n Homemaker 12 P r o f e s s i o n a l / m a n a g e r i a l 10 S k i l l e d t r a d e s 9 C l e r i c a l work 4 Farmer 4 U n s k i l l e d manual l a b o r 1 T o t a l 40 Home r e g i o n . For s t a t i s t i c a l convenience, the s u b j e c t s were assign e d to two groups based on the home addresses l i s t e d on t h e i r c h a r t s . The f i r s t group i n c l u d e d 18 s u b j e c t s from Greater Vancouver urban area and the second i n c l u d e d 22 from the remainder of B r i t i s h Columbia. Performance s t a t u s . A l l o f the s u b j e c t s were assigned a performance s c o r e by the i n t e r v i e w e r f o l l o w i n g the procedure l a i d out by Karnofsky and Burchenol (1949) and confirmed as 45 v a l i d by Yates, Chalmer and HcKegney (1980). The score i s based on the s u b j e c t ' s d e s c r i p t i o n o f h i s or her d a i l y a c t i v i t i e s . For i n c l u s i o n i n the study, the s u b j e c t s were r e q u i r e d t o be ambulatory and coping reasonably w e l l with the a c t i v i t i e s o f d a i l y l i v i n g . In keeping with t h a t requirement, a l l 40 s u b j e c t s s c o r e d between 70 and 90 out of 100 on the Karnofsky s c a l e as shown i n Table V. The mean s c o r e was 79.8 wh i l e the median and mode were 80. Table V Performance S t a t u s Karnofsky Score Men Women T o t a l 70 1 3 4 75 3 6 9 80 9 9 18 85 3 0 3 90 3 3 6 19 21 40 Disease s i t e . The s u b j e c t s had a v a r i e t y o f d i s e a s e s i t e s . For convenience, the s e v e r a l d i f f e r e n t s i t e s have been grouped i n t o broader c a t e g o r i e s as shown i n Table VI. 46 Table VI Diaeaae S i t e Gyn & Head & S i t e GI/GU Brea s t Sk i n Neck Other n 13 15 6 3 3 Number of treatments. A l l o f the s u b j e c t s were i n t e r v i e w e d d u r i n g the f i r s t week of t h e i r r a d i o t h e r a p y treatments. E i g h t of the s u b j e c t s were i n t e r v i e w e d b e f o r e t h e i r f i r s t treatment; the r e s t had had between one and f i v e r a d i o t h e r a p y treatments each. The mean number of treatments was 2.8 w h i l e the median f o r the e n t i r e sample was 4. The mean number of treatments was h i g h e r f o r men a t 3.1 than f o r women a t 2.4 although the d i f f e r e n c e i s not s t a t i s t i c a l l y s i g n i f i c a n t . Complete i n f o r m a t i o n on the d i s t r i b u t i o n o f numbers of treatments i s presented i n Table V I I . Nature of treatment. Radiotherapy was the primary mode of treatment f o r 16 of the s u b j e c t s , the on l y p r i o r surgery having been a d i a g n o s t i c b i o p s y . For the remaining 24 s u b j e c t s , r a d i o t h e r a p y was an adjuvant treatment f o l l o w i n g s u r g e r y . 47 Table VII Number of Radiotherapy Treatments Number of Treatments Hen Women T o t a l 0 3 5 9 1 0 5 5 2 3 2 5 3 2 0 2 4 6 3 9 5 5 6 11 1 9 21 4 0 The sample and other p o p u l a t i o n s . For a v a r i e t y o f reasons, i t i s d i f f i c u l t t o compare the sample d i r e c t l y with e i t h e r the r a d i o t h e r a p y p a t i e n t p o p u l a t i o n or the o v e r a l l cancer p a t i e n t p o p u l a t i o n . Although the Cancer C o n t r o l Agency of B.C. sees a g r e a t many of the p r o v i n c e ' s cancer p a t i e n t s and c o l l e c t s some demographic data on each p a t i e n t seen, i t s needs and purposes are not the same as those o f t h i s study. The Agency does not c o l l e c t the same demographic i n f o r m a t i o n on i t s p a t i e n t s as has been c o l l e c t e d f o r t h i s study or, a t l e a s t , i t o r g a n i z e s the i n f o r m a t i o n along d i f f e r e n t l i n e s . What can be s a i d i s t h a t the sample r e p r e s e n t s approximately 10X of the new r a d i o -therapy p a t i e n t s t r e a t e d d u r i n g the data c o l l e c t i o n 4 8 p e r i o d (414), and j u s t under 1% of the p a t i e n t s t r e a t e d d u r i n g the l a s t complete year (4729) (CCABC, 1985). S e c t i o n 2 - The Health Care P r e f e r e n c e Survey The responses t o the HCPS can be co n s i d e r e d i n two d i f f e r e n t ways, each of which y i e l d s i n t e r e s t i n g i n f o r m a t i o n . When the number of i n t e r v e n t i o n c h o i c e s i s summed t o y i e l d an o v e r a l l s c o r e out of seven, t h a t s c o r e r e p r e s e n t s a ge n e r a l tendency t o choose the c o g n i t i v e i n t e r v e n t i o n r i g h t through the course o f treatment. On the other hand, each i n d i v i d u a l item may be taken as a t e s t o f the s u b j e c t ' s f e e l i n g s towards a given i n t e r v e n t i o n a t a p a r t i c u l a r stage o f the diagno-s i s and treatment process, and the r e s u l t i s then seven d i f f e r e n t s c o r e s . Each o f those s c o r e s i s an i n d i c a t i o n of an i n t e r v e n t i o n p r e f e r e n c e a t a p a r t i c u l a r time or i n a p a r t i c u l a r s i t u a t i o n . Before c o n t i n u i n g any f u r t h e r with the d i s c u s s i o n , i t i s worth l o o k i n g a t the f i n d i n g s as presented i n Table V I I I . Responses t o the HCPS. When the responses t o the HCPS are summed f o r a s i n g l e p r e f e r e n c e s c o r e , these s u b j e c t s overwhelmingly p r e f e r r e d the c o g n i t i v e over the a f f e c t i v e i n t e r v e n t i o n , the mean sc o r e being 4.98 out of 7. I f the s u b j e c t s had been i n d i f f e r e n t t o the i n t e r v e n t i o n s o f f e r e d or had p r e f e r r e d an a f f e c t i v e i n t e r v e n t i o n , the mean sc o r e 49 would have been 3.5 or l e e s . The s c o r e s ranged from 2-7 with the median s c o r e 5 and the mode 4. Table VIII I n t e r v e n t i o n Choices on the Health Care P r e f e r e n c e Survey f o r I n d i v i d u a l Items Item I n t e r v e n t i o n 1 2 3 4 5 6 7 T o t a l * A l l S u b j e c t s <N = 40) C o g n i t i v e 17 28 38 20 32 29 35 199 A f f e c t i v e 23 12 2 20 8 11 5 81 Women Only C o g n i t i v e 8 12 20 A f f e c t i v e 13 9 1 <N = 21) 10 16 15 18 99 11 5 6 3 48 Men Only <N = 19) C o g n i t i v e 9 16 18 10 16 14 17 100 A f f e c t i v e 10 3 1 9 3 5 2 33 a T o t a l p o s s i b l e c h o i c e s are 280, 147 and 133 f o r a l l s u b j e c t s , women and men r e s p e c t i v e l y . When a l l items were summed t h e r e were 199 c h o i c e s f o r c o g n i t i v e i n t e r v e n t i o n and 81 c h o i c e s made f o r the a f f e c t i v e i n t e r v e n t i o n . Over the seven items t h i s averages out t o 28.4 s u b j e c t s i n d i c a t i n g a p r e f e r e n c e 50 f o r the c o g n i t i v e i n t e r v e n t i o n on each item. When the items are examined one a t a time, some i n t e r e s t i n g v a r i a t i o n s from t h a t h y p o t h e t i c a l average response p a t t e r n appear. The responses t o two of the items (3 and 7) were very s t r o n g l y i n f o r m a t i o n - o r i e n t e d compared t o the average o f the summed responses. For two other items (1 and 4) the responses l e a n toward the a f f e c t i v e / support i n t e r v e n t i o n . To determine whether the p a t t e r n of response t o the v a r i a n t items was s t a t i s t i c a l l y s i g n i f i c a n t , a s e r i e s o f c h i - s q u a r e t e s t s was done. The p r o p o r t i o n o f s u b j e c t s choosing the c o g n i t i v e i n t e r v e n -t i o n on any giv e n item was compared t o the p r o p o r t i o n making the same c h o i c e on a l l the oth e r items combined. As seven d i f f e r e n t s c o r e s went i n t o making up the two by two matrix, the degrees of freedom was s e t a t s i x . The r e s u l t s a re shown i n Table IX. Items 1 and 3 are s t a t i s t i c a l l y s i g n i f i c a n t a t l e a s t a t the .05 l e v e l and item 4 approaches s i g n i f -i c a n c e a t the .10 l e v e l . In item 1, which d e s c r i b e s a r e s t l e s s or anxious p a t i e n t p r i o r t o surgery, the s u b j e c t s chose the a f f e c t i v e i n t e r v e n t i o n . In t h a t s i t u a t i o n they wanted emotional support and reassurance r a t h e r than an c o g n i t i v e i n t e r v e n t i o n . When ad v i s e d , as i n item 3, t h a t they ought t o have r a d i o t h e r a p y , a l l but two o f them chose the c o g n i t i v e i n t e r v e n t i o n . In item 4, when r a d i o t h e r a p y was t o commence i n the near f u t u r e , 51 they were e q u a l l y d i v i d e d between the two o p t i o n s , although t h a t r e p r e s e n t s a much lower p r o p o r t i o n choosing c o g n i t i v e i n t e r v e n t i o n s than the mean f o r a l l items. Table IX D i f f e r e n c e s Between Items 0 Item 1 2 3 4 5 6 7 Ratio** 17/23 28/12 38/2 20/20 32/8 29/11 35/5 X2c 18.52** .026 12.99**10.08* 1.80 .05 6.13 a Items o f the Health Care P r e f e r e n c e Survey r e p o r t e d f o r the e n t i r e sample (N = 40). b R a t i o o f c o g n i t i v e c h o i c e s t o a f f e c t i v e c h o i c e s . c T h e c r i t i c a l v a lue f o r X2 with df = 6 i s 12.6. * p i . l 0 . **pi.05 The s u b j e c t s d i d respond t o d i f f e r e n t items i n d i f f e r e n t ways. In an e f f o r t t o see whether the d i f f e r e n c e c o u l d be accounted f o r by common f e a t u r e s among the items, each item was examined f o r s i m i l a r i t i e s i n c ontent, c l i n i c a l s i t u a t i o n , i m p l i e d f e e l i n g s t a t e o f the s u b j e c t , i d e n t i t y o f the h e a l t h care worker i n v o l v -ed, type o f i n t e r v e n t i o n o f f e r e d and amount of pe r s o n a l c o n t a c t i n v o l v e d . The onl y f a c t o r which seemed t o a f f e c t i n t e r v e n t i o n c h o i c e i n any meaningful way was the c l i n i c a l c o n t e x t o f the s i t u a t i o n presented i n the HCPS item. I t i s i n t e r e s t i n g t o note t h a t the s u b j e c t s completed the q u e s t i o n n a i r e s d u r i n g t h e i r f i r s t week of 52 r a d i o t h e r a p y t r e a t m e n t . They had p a s s e d t h e d i a g n o s t i c p h a s e o f t h e i r i l l n e s s and were i n t h e a c t i v e t r e a t m e n t p h a s e . Thus, i t e m s 3, 4, 5, 6 and 7 were t y p i c a l s i t u a t i o n s t h a t t h e y were c u r r e n t l y d e a l i n g w i t h . The c o n t e n t o f t h e i n d i v i d u a l i t e m s and t h e r e s p o n s e s t o t h e i t e m s a r e shown i n T a b l e X. The l i t e r a t u r e ( J a n i s , 1958) s u g g e s t s t h a t t h e p e r i o d j u s t p r i o r t o s u r g e r y c a n be an a n x i o u s t i m e f o r p a t i e n t s ; t h e i r p r e f e r e n c e i s f o r c a r e i n t h e a f f e c t i v e r e a l m . S u r g e r y h a s been d e s c r i b e d a s a t h r e a t e n i n g e v e n t ( J o h n s o n , L e v e n t h a l & Dabbs J r . , 1971; J o h n s o n & L e v e n t h a l , 1974; C o c h r a n , 1 9 8 4 ) . The d i f f e r e n c e i n w o r d i n g between i t e m s 1 and 3 may be s i g n i f i c a n t . I n i t e m 1 t h e p a t i e n t h as a l r e a d y g i v e n p e r m i s s i o n f o r s u r g e r y and i s a w a i t i n g b o t h t h e s u r g e r y i t s e l f and t h e d i a g n o s t i c r e s u l t s i t w i l l p r o d u c e . I n i t e m 3, t h e p a t i e n t h a s been a d v i s e d t o t a k e a c e r t a i n c o u r s e o f t r e a t m e n t . No d e c i s i o n h a s y e t been made and i t c a n n o t be made w i t h o u t i n f o r m a t i o n . The p a t i e n t s e e k s o u t i n f o r m a t i o n i n o r d e r t o make a b e t t e r d e c i s i o n . I n i t e m 4, t h e e v e n t o f r a d i o t h e r a p y i s d e s c r i b e d a s i n t h e i m m e d i a t e f u t u r e . I f t h e s u b j e c t s v i e w r a d i o t h e r a p y a s a t h r e a t e n i n g e v e n t , t h e y may be a m b i v a l e n t a s t o t h e i r p r e f e r e n c e f o r c a r e . I n many ways, t h e s i t u a t i o n j u s t p r i o r t o r a d i o t h e r a p y i s s i m i l a r t o t h e one j u s t p r i o r t o s u r g e r y . A l l d e c i s i o n s h a v e been made and t h e p a t i e n t s may f e e l t h a t more 53 i n f o r m a t i o n a t t h a t p o i n t would be l e s s h e l p f u l t h a n r e a s s u r a n c e . The s t a t i s t i c a l a s s o c i a t i o n f o r i t e m 4 i s w e a k l y p o s i t i v e f o r i n f o r m a t i o n a s compared t o t h e t o t a l . C a s s i l e t h e t a l . (19S0) s u g g e s t t h a t p a t i e n t s want i n f o r m a t i o n , b u t t h e f i n d i n g s do n o t s p e c i f y t h e t i m i n g o f t h e i n f o r m a t i o n . R e s p o n s e s i n t h i s s t u d y s u g g e s t t h a t t i m i n g may be a c r i t i c a l f a c t o r i n p a t -i e n t s ' p r e f e r e n c e s f o r c o g n i t i v e o r f o r a f f e c t i v e i n t e r v e n t i o n s . T a b l e X C o n t e n t o f HCPS Items w i t h R e s p o n s e s . P r e f e r e n c e f o r : C l i n i c a l S i t u a t i o n HCPS Item C o g n i t i v e / I n f o r m a t i o n A f f e c t i v e / S u p p o r t P r e - s u r g e r y e v e n i n g 1 17 23 I n h o s p i t a l - u n f a m i l i a r d i a g n o s t i c t e s t 2 28 12 Recommendation f o r r a d i o t h e r a p y t r e a t m e n t 3 38 2 P r i o r t o r a d i o t h e r a p y commencing 4 20 20 F i r s t t r e a t m e n t 5 32 8 C o n c e r n s a b o u t s i d e -e f f e c t s o f r a d i o t h e r a p y 6 29 11 F a m i l y d i s c u s s i o n s a b o u t r a d i o t h e r a p y t r e a t m e n t s 7 35 5 54 Dodd (1985) r a i s e s q u e s t i o n s a b o u t t h e c o n s i s t e n c y , t h e r e l i a b i l i t y and t h e v a l i d i t y o f t h e HCPS i n s t r u m e n t . Her f i n d i n g s i n d i c a t e d no s i g n i f i c a n t d i f f e r e n c e s i n p r e f e r e n c e s f o r i n f o r m a t i o n among t h e s u b j e c t s s t u d i e d . Dodd u s e d t h e C o e f f i c i e n t A l p h a t e s t ( C r o n b a c h , 1951) t o d e t e r m i n e w h e t h e r d i f f e r e n t h a l v e s o f t h e t e s t y i e l d e d s i m i l a r r e s u l t s . Her a n a l y s i s y i e l d e d a s c o r e f o r i n f o r m a t i o n a l p h a o f .20. She r e p o r t e d t h a t : H e a l t h C a r e P r e f e r e n c e s u b s c a l e s ' r e l i a b i l i t y c o e f f i c i e n t s were low and would r e n d e r t h i s i n s t r u m e n t s u s p e c t o f c o n t a i n i n g n o n c o n t r i b u t -i n g i t e m s . A g e n e r a l r u l e i s t h a t any i n s t r u m e n t w i t h an a l p h a l e v e l ( C r o n b a c h ) l o w e r t h a n .6 i s o f q u e s t i o n a b l e v a l u e , (p.12) Dodd's u s e o f C r o n b a c h ' s A l p h a assumes t h a t t h e summed s c o r e i s e q u i v a l e n t t o a p r e f e r e n c e f o r i n t e r -v e n t i o n . I f t h e HCPS i s ex a m i n e d on an i t e m - b y - i t e m a n a l y s i s , t h e C o e f f i c i e n t A l p h a r e s u l t may n o t be as p o w e r f u l an i n d i c a t o r o f r e l i a b i l i t y and v a l i d i t y . Dodd seems t o assume t h a t t h e p r e f e r e n c e f o r i n t e r v e n t i o n i s o r s h o u l d be c o n s i s t e n t o v e r t i m e and i n a l l c l i n i c a l s i t u a t i o n s r e g a r d l e s s o f h e a l t h c a r e p r o v i d e r o r a s s o c i a t e d f e e l i n g s t a t e . I f t h e HCPS i s m e a s u r i n g p a t i e n t s ' p r e f e r e n c e s f o r a c o g n i t i v e o r f o r an a f f e c t -i v e i n t e r v e n t i o n , i t may be p i c k i n g up a p r e f e r e n c e a t a p a r t i c u l a r t i m e and i n a p a r t i c u l a r c l i n i c a l s i t u a t i o n . T h u s , t h e HCPS may be a v a l i d and r e l i a b l e i n s t r u m e n t i f one t a k e s i n t o a c c o u n t t h e e l e m e n t o f t i m i n g . 55 C o n c u r r e n t V a l i d i t y . I n a d d i t i o n t o t h e HCPS, t h e s u b j e c t s r e s p o n d e d t o a c o n c u r r e n t v a l i d i t y i t e m w i t h f i v e o p t i o n s . ( s e e A p p e n d i x B) " I n g e n e r a l , i f you were g i v e n a c h o i c e by y o u r d o c t o r o r n u r s e a s t o t h e t y p e o f c a r e you would f i n d most h e l p f u l i n a d d i t i o n t o y o u r m e d i c a l t r e a t m e n t , w h i c h one would you c h o o s e ? " A summary o f t h e r e s p o n s e s i s shown i n T a b l e X I . T a b l e XI C o n c u r r e n t V a l i d i t y Q u e s t i o n R e s p o n s e A B C D E Number o f s u b j e c t s 25 0 11 1 3 The m a j o r i t y o f t h e s u b j e c t s c h o s e t h e i n f o r m a t i o n o p t i o n A, " I would want more i n f o r m a t i o n . " I f one i n c l u d e s t h e s u b j e c t s t h a t c h o s e o p t i o n E, " S o m e t h i n g d i f f e r e n t , " and t h e n r e p o r t e d t h a t t h e y wanted some c o m b i n a t i o n o f i n f o r m a t i o n and one o f t h e o t h e r c h o i c e s , t h e p r o p o r t i o n o f s u b j e c t s c h o o s i n g i n f o r m a t i o n i s a p p r o x i m a t e l y t h e same a s f o r t h e o v e r a l l s c o r e o f t h e HCPS.(28/40 = 70?O When t h e s u b j e c t s c h o o s i n g o p t i o n s C and E a r e k e p t s e p a r a t e f r o m t h e r e s t and a K r u s k a l W a l l i s t e s t i s done a g a i n s t t h e r a n k e d HCPS s c o r e s ( c o r r e c t e d f o r t i e s ) , a s i g n i f i c a n c e l e v e l o f a b o u t p_ = .10 i s a c h i e v e d . The t r e n d i n d i c a t e d by t h e s e r e s u l t s 56 i s i n t h e same d i r e c t i o n a s n o t e d a b o v e - - p e o p l e c h o o s i n g t h e c o g n i t i v e i n t e r v e n t i o n on t h e HCPS a l s o c h o o s e o p t i o n A on t h e c o n c u r r e n t v a l i d i t y q u e s t i o n . S e c t i o n 3 - A s s o c i a t i o n s Between t h e HCPS and  De m o g r a p h i c V a r i a b l e s The v a r i a b l e s o f age, s e x , m a r i t a l s t a t u s , l e v e l o f e d u c a t i o n , e t h n i c o r i g i n , o c c u p a t i o n , home r e g i o n , p e r f o r m a n c e s t a t u s , d i s e a s e s i t e , number o f t r e a t m e n t s , and p r i m a r y v e r s u s a d j u v a n t t r e a t m e n t were e x a m i n e d t o d e t e r m i n e w h e t h e r a r e l a t i o n s h i p e x i s t e d between any o f them and t h e HCPS a s a whole o r i t s i n d i v i d u a l i t e m s . No c o m p a r i s o n c a n be made, b a s e d on d e m o g r a p h i c v a r i a b l e s , between t h i s s t u d y and Dodd's<1985) s t u d y o f p r e f e r e n c e s f o r i n f o r m a t i o n . W h i l e Dodd o r i g i n a l l y i n t e n d e d t o l o o k a t t h e r e l a t i o n s h i p between p r e f e r e n c e f o r i n f o r m a t i o n and d e m o g r a p h i c s , s h e d i d n o t do a d e m o g r a p h i c a n a l y s i s b e c a u s e o f t h e low C r o n b a c h A l p h a s c o r e o f t h e HCPS (M. J . Dodd, P e r s o n a l c o m m u n i c a t i o n , A p r i l 4, 1 9 8 5 ) . Age. A Spearman's r a n k c o r r e l a t i o n done between age and t h e summed s c o r e on t h e HCPS gave a c o r r e l a t i o n o f l e s s t h a n 0.10. C a s s i l e t h e t a l . ( 1 9 8 0 ) , w o r k i n g w i t h a s l i g h t l y y o u n g e r sample (median age o f 55.5 y e a r s ) , f o u n d t h a t age was a s i g n i f i c a n t v a r i a b l e a f f e c t i n g p a t i e n t s ' p r e f e r e n c e s . I t d o e s n o t a p p e a r t o be s i g n i f i c a n t f o r t h e sample i n t h i s s t u d y . When t h e 57 sample was d i v i d e d i n t o a p p r o x i m a t e t h i r d s by g r o u p i n g t o g e t h e r a l l t h o s e u n d e r 58 y e a r s , a l l t h o s e o v e r 66 y e a r s and a l l t h e o t h e r s , and t h o s e g r o u p s were c h i -s q u a r e t e s t e d a g a i n s t i n d i v i d u a l HCPS i t e m s , no s i g n i f -i c a n t d i f f e r e n c e s were f o u n d . Sex. O v e r a l l , i n t h i s s t u d y , men c h o s e t h e c o g n i t i v e i n t e r v e n t i o n o p t i o n more o f t e n t h a n women. The r a n g e o f s c o r e s f o r men was 3-7 w h i l e t h e mean was 5.2. The r a n g e f o r women was 2-7 and t h e mean 4.7. The Mann-Whitney t e s t f o r d i c h o t o m o u s g r o u p s gave a U - s c o r e o f 159 and a c o r r e s p o n d i n g z - s c o r e o f -1.1. As t h e c r i t i c a l v a l u e f o r Z - s c o r e s i n t h i s s i t u a t i o n i s 1.64, t h e r e i s no s t a t i s t -i c a l l y s i g n i f i c a n t r e l a t i o n s h i p between s e x and o v e r a l l HCPS s c o r e . T h e r e a r e s i g n i f i c a n t r e s u l t s when t h e s e x e s a r e compared on an i t e m - b y - i t e m b a s i s . C h i - s q u a r e t e s t s f o r se x v s . i n t e r v e n t i o n c h o i c e f o r e a c h i t e m g a v e one s t r o n g l y s i g n i f i c a n t r e s u l t . On i t e m 2, women p r e f e r r e d t h e c o g n i t i v e i n t e r v e n t i o n o n l y s l i g h t l y whereas men s t r o n g l y c h o s e t h a t o p t i o n . The v a l u e o f X2 ( 1 , N_ = 40) f o r t h i s i t e m was 4.88, p_ <-03. T h i s i t e m i s a d i f -f i c u l t one t o i n t e r p r e t a s e a c h o p t i o n i n c l u d e s two d i f f e r e n t and p o s s i b l y c o n t r a d i c t o r y t y p e s o f i n t e r a c t -i o n . The i n f o r m a t i o n o p t i o n h as a n u r s e p r e s e n t t h e i n f o r m a t i o n and t h e n l e a v e . The a f f e c t i v e o p t i o n h as 58 t h e n u r s e s t a y and c o m f o r t t h e p a t i e n t . I t may be t h e p r o v i s i o n o f i n f o r m a t i o n o r c o m f o r t , o r t h e p r e s e n c e o r a b s e n c e o f someone e l s e i n t h e room w h i c h makes t h e d i f f e r e n c e f o r men o r women. M a r i t a l s t a t u s . No s i g n i f i c a n t a s s o c i a t i o n was f o u n d between s c o r e s on t h e HCPS and m a r i t a l s t a t u s u s i n g t h e Mann-Whitney t e s t f o r d i c h o t o m o u s g r o u p s ( m a r r i e d , n o t m a r r i e d ) (U s c o r e = 195; 2 s c o r e =.08). When i t e m - b y - i t e m c o m p a r i s o n s were done u s i n g c h i - s q u a r e t e s t s no s i g n i f -i c a n t a s s o c i a t i o n s were f o u n d . T h i s f i n d i n g i s i n a c c o r d w i t h t h a t o f C a s s i l e t h e t a l . ( 1 9 8 0 ) . E d u c a t i o n . U s i n g c h i - s q u a r e t e s t s f o r t h r e e g r o u p s w i t h d i f f e r e n t e d u c a t i o n a l l e v e l s , 8-10 y e a r s o f c o m p l e t e d e d u c a t i o n , 11-12 y e a r s , and 13 o r more y e a r s , no s i g n i f i c a n t a s s o c i a t i o n was f o u n d on an i t e m - b y - i t e m a n a l y s i s . A Spearman's r a n k c o r r e l a t i o n o f y e a r s o f e d u c a t i o n w i t h t h e summed HCPS s c o r e p r o d u c e d a c o r r e l a -t i o n o f l e s s t h a n 0.10. E t h n i c o r i g i n . The c a t e g o r i e s f o r e t h n i c o r i g i n were r e d u c e d f o r s t a t i s t i c a l p u r p o s e s t o t w o — B r i t i s h (n = 20) and O t h e r (n = 1 5 ) . F i v e o u t o f t h e f o r t y s u b j e c t s d i d n o t i n d i c a t e an e t h n i c b a c k g r o u n d . A Mann-Whitney t e s t f o r d i c h o t o m o u s g r o u p s was done w i t h s i g n i f i c a n t r e s u l t s 59 <U s c o r e = 264.5: Z s c o r e = 1.74, p_ < . 0 4 ) . The i t e m - b y - i t e m a n a l y s i s shows t h a t t h e r e a r e s i g n i f i c a n t r e s u l t s f o r i t e m 1 (p_ < .03) and a l m o s t s i g n i f i c a n t r e s u l t s f o r i t e m 6 (p_ < . 0 6 ) . What i s i n t e r e s t i n g a b o u t a l l o f t h e s e r e s u l t s i s t h e d i r e c t i o n . S u b j e c t s o f B r i t i s h o r i g i n c h o s e t h e c o g n i t i v e i n t e r v e n t i o n s i g n i f -i c a n t l y l e s s o f t e n t h a n o t h e r s , o r c h o s e t h e a f f e c t i v e / -s u p p o r t o p t i o n more o f t e n t h a n o t h e r s , w h e t h e r measured on t h e summed s c o r e o f t h e HCPS o r on t h e i n d i v i d u a l i t e m s m e n t i o n e d a b o v e . O c c u p a t i o n . A K r u s k a l - W a l l i s t e s t was done c o m p a r i n g r a n k e d HCPS s c o r e s f o r f i v e o c c u p a t i o n a l c a t e g o r i e s - -p r o f e s s i o n a l / m a n a g e r i a l , homemaker, s k i l l e d t r a d e , c l e r i c a l and f a r m e r . A p_ < .06 l e v e l o f s i g n i f i c a n c e was f o u n d . W h i l e n o t q u i t e r e a c h i n g t h e p_ < .05 l e v e l s e t f o r t h i s s t u d y , i t c l o s e l y a p p r o a c h e s s i g n i f i c a n c e . Most o f t h e d i f f e r e n c e i s p o s s i b l y due t o t h e l o w e r HCPS s c o r e s f o r t h e homemaker and h i g h e r s c o r e s f o r t h e p r o f e s s i o n a l / m a n a g e r i a l c a t e g o r i e s . The numbers i n e a c h c a t e g o r y were t o o s m a l l t o a l l o w a v a l i d i t e m - b y - i t e m c h i - s q u a r e t e s t f o r o c c u p a t i o n s and t h e r e d i d n o t seem t o be a r e a s o n a b l e way t o c o l l a p s e o c c u p a t i o n a l c a t e g o r i e s t o g e t h e r . Home r e g i o n . 60 A Mann-Whitney t e s t was done w i t h t h e c a t e g o r i e s V a n c o u v e r (18) and E l s e w h e r e ( 2 2 ) . No s i g n i f i c a n t d i f f e r e n c e was f o u n d between t h e s e two g r o u p s . (U s c o r e = 200.5; Z s c o r e = .027) The i t e m - b y - i t e m a n a l y s i s l i k e w i s e r e v e a l e d no s i g n i f i c a n t r e l a t i o n s h i p between an u r b a n o r r u r a l b a c k g r o u n d and p r e f e r e n c e f o r i n t e r v e n t i o n . P e r f o r m a n c e s t a t u s . A Spearman's r a n k c o r r e l a t i o n between t h e r a n k e d HCPS s c o r e s and t h e K a r n o f s k y p e r f o r m a n c e s t a t u s s c o r e s was done w i t h t h e r e s u l t b e i n g a c o r r e l a t i o n o f l e s s t h a n 0.10. When an i t e m - b y - i t e m a n a l y s i s was done, i t e m 2 (new d i a g n o s t i c t e s t i m m e d i a t e l y ) y i e l d e d a r e s u l t w h i c h c l o s e l y a p p r o a c h e d s i g n i f i c a n c e . As w i t h o t h e r d e m o g r a p h i c v a r i a b l e s , t h e sample was d i v i d e d i n t o a p p r o x i m a t e l y e v e n t h i r d s c o r r e s p o n d i n g t o K a r n o f s k y s c o r e s below 80, e q u a l t o 80, and above 80 ( s e e T a b l e V ) . The s u b j e c t s i n p o o r e r p h y s i c a l c o n d i t i o n ( s c o r e < 80) p r e f e r r e d an a f f e c t i v e / s u p p o r t i n t e r v e n t i o n w h i l e t h o s e i n b e t t e r c o n d i t i o n ( s c o r e > 80) p r e f e r r e d i n f o r m a t i o n by an 8 t o 1 m a r g i n . F o r t h i s r e l a t i o n s h i p t h e v a l u e was 5.57 (2, N = 40, p_ < . 0 6 ) . I f t h e r e had been more s u b j e c t s w i t h s c o r e s below 80, o r i f s u b j e c t s w i t h s c o r e s beow 70 had been a d m i t t e d t o t h e s t u d y and t h e r e l a t i o n s h i p between p e r f o r m a n c e s t a t u s and p r e f e r e n c e r e m a i n e d a s i n d i c a t e d , t h e r e s u l t s may 61 have r e a c h e d t h e c r i t i c a l l e v e l f o r t h i s and p o s s i b l y o t h e r i t e m s . None o f t h e o t h e r i t e m s a p p r o a c h e d s i g n i f i c a n c e . D i s e a s e s i t e . A K r u s k a l - W a l l i s t e s t was done c o m p a r i n g t h e r a n k s o f t h e HCPS s c o r e s , c o r r e c t e d f o r t i e s , o f s u b j e c t s w i t h GI/GU, G y n / B r e a s t , S k i n and o t h e r c a n c e r s . The r e s u l t , w i t h a p r o b a b i l i t y o f p_ < .055, <H = 7.58; d f = 3 ) , was t h a t s u b j e c t s w i t h S k i n c a n c e r s were more l i k e l y t o c h o o s e t h e i n f o r m a t i o n i n t e r v e n t i o n t h a n t h o s e w i t h G y n / B r e a s t , o r o t h e r c a n c e r s . The i t e m - b y - i t e m a n a l y s i s r e v e a l e d no s i g n i f i c a n t d i f f e r e n c e s . Number o f t r e a t m e n t s . The number o f t r e a t m e n t s a l r e a d y r e c e i v e d a t t h e t i m e o f i n t e r v i e w d i d n o t seem t o be r e l a t e d t o e i t h e r t h e o v e r a l l HCPS s c o r e o r t o any o f i t s i t e m s . P r i m a r y o r a d i u v a n t t r e a t m e n t . A l t h o u g h p r i o r s u r g e r y d i d n o t a f f e c t o v e r a l l HCPS s c o r e s i n any s i g n i f i c a n t way, i t was a f a c t o r i n t h e r e s p o n s e s t o i t e m 2 (new d i a g n o s t i c t e 3 t i m m e d i a t e l y ) . A l l 16 s u b j e c t s f o r whom r a d i o t h e r a p y was t h e p r i m a r y mode o f t r e a t m e n t wanted more i n f o r m a t i o n a b o u t t h e upcoming t e s t . O n l y o n e - h a l f (12/24) o f t h o s e s u b j e c t s who had had p r i o r s u r g e r y o p t e d f o r t h e i n f o r m a t i o n i n t e r v e n t i o n ; t h e r e s t c h o s e t h e s u p p o r t o p t i o n . X2 ( l , N = 40) = 13.9, p_ < .001. 62 S e c t i o n 4 - HCPS S c o r e s and STAI S c o r e s The s u b j e c t s c o m p l e t e d t h e S t a t e - T r a i t A n x i e t y I n v e n t o r y 2-5 d a y s a f t e r t h e y had begun r a d i o t h e r a p y t r e a t m e n t . O v e r a l l , t h e a n x i e t y s c o r e s were low. Out o f a p o s s i b l e 20-80 p o i n t s , t h e mean S t a t e and T r a i t s c o r e s were 33.13 and 32.86 r e s p e c t i v e l y . As shown i n T a b l e s X I I and X I I I , t h e f e m a l e s u b j e c t s had s l i g h t l y h i g h e r mean S t a t e and T r a i t s c o r e s ; however, t h e d i f f e r e n c e was n o t s t a t i s t i c a l l y s i g n i f i c a n t . T a b l e X I I S t a t e S c o r e s Group N Mean S t d Dev O v e r a l l 40 33.13 10.99 Women 21 34.05 11.77 Men 19 32.11 9.97 S p i e l b e r g e r (1983) p r o v i d e s norms f o r b o t h S t a t e and T r a i t a n x i e t y s c o r e s f o r w o r k i n g a d u l t s a t a v a r i e t y o f a g e s , i n c l u d i n g t h e age r a n g e f r o m 50 t o 69 w h i c h i n c l u d e s t h e 2 c e n t r a l q u a r t i l e s o f t h e s t u d y s a m p l e . F o r S - A n x i e t y , mean s c o r e s f o r men a r e 34.51 (SD = 10.34) and f o r women 32.20 (SD = 8 . 6 7 ) . In t h i s s t u d y , a s i n d i c a t e d i n T a b l e X I I , men's and women's s c o r e s a r e r e v e r s e d w i t h men h a v i n g t h e l o w e r and women t h e h i g h e r 63 T a b l e X I I I T r a i t S c o r e s Group N Mean S t d Dev O v e r a l l 40 32.35 8.69 Women 21 32.86 8.97 Men 19 31.79 8.33 mean s c o r e . F o r T - A n x i e t y , S p i e l b e r g e r r e p o r t s mean s c o r e s f o r men o f 33.86 (SD. = 8.86) and f o r women o f 31.79 (SD = 7 . 7 8 ) . A g a i n , t h e r e l a t i o n s h i p between men's and women's s c o r e s and s t a n d a r d d e v i a t i o n s i s r e v e r s e d . S p i e l b e r g e r a l s o c i t e s norms f o r g e n e r a l m e d i c a l and s u r g i c a l p a t i e n t s w i t h no p s y c h i a t r i c c o m p l i c a t i o n s i n t h e low 40's ( S t a t e : M = 42.68; SD = 13.76, T r a i t : M = 41.33; SD = 1 2 . 5 5 ) . I f t h e d i a g n o s i s and t r e a t m e n t o f c a n c e r a r e a s t h r e a t e n i n g a s t h e l i t e r a t u r e i n d i c a t e s and i f t h e p e r c e p t i o n o f t h r e a t i s a p r i n c i p a l c a u s e o f S t a t e a n x i e t y a s t h e o r i z e d by S p i e l b e r g e r ( 1 9 6 6 ) , L a z a r u s (1977) and o t h e r s , one would have e x p e c t e d S t a t e a n x i e t y s c o r e s h i g h e r t h a n t h e norms f o r t h e age g r o u p i n v o l v e d . T h u s , t h e f i n d i n g s o f t h i s s t u d y a r e n o t c o n s i s t e n t w i t h t h o s e o f p r e v i o u s s t u d i e s . The s u b j e c t s have r e s p o n d e d t o t h e STAI much more l i k e n e u t r a l l y s t r e s s e d w o r k i n g 64 a d u l t s t h a n l i k e p a t i e n t s w i t h a l i f e - t h r e a t e n i n g and a n x i e t y - p r o v o k i n g i l l n e s s . T h e r e a r e s e v e r a l p o s s i b l e e x p l a n a t i o n s f o r t h e d i s c r e p a n c y . S p i e l b e r g e r ' s n o r m a t i v e d a t a show a s t e a d y d e c l i n e i n mean s c o r e s w i t h age f o r b o t h S t a t e and T r a i t a n x i e t y ; however, t h e o l d e s t s u b j e c t s he c o n s i d e r s a r e o n l y 69. I f t h e t r e n d i s m a i n t a i n e d , t h e o l d e r s u b j e c t s i n t h e s t u d y s a m p l e , making up a l m o s t one q u a r t e r o f t h e t o t a l m i g h t l o w e r t h e mean s c o r e . T h i s p o s s i b i l i t y i s o f f s e t somewhat by t h e t e n d e n c y o f t h e y o u n g e s t q u a r t e r o f t h e s a m ple p o p u l a t i o n t o r a i s e t h e mean s c o r e . I n any c a s e , a Spearman's r a n k c o r r e l a t i o n t e s t shows no s t a t i s t i c a l l y s i g n i f i c a n t c o r r e l a t i o n between e i t h e r S t a t e o r T r a i t a n x i e t y and age f o r t h i s s a m p l e . A n o t h e r p o s s i b l e e x p l a n a t i o n i s t h a t a n x i e t y i s a t l e a s t p a r t l y t h e r e s u l t o f a n t i c i p a t i o n and t h a t t h e s u b j e c t s a r e l e s s a n x i o u s b e c a u s e t h e i r t r e a t m e n t s have s t a r t e d . U n f o r t u n a t e l y , however, no c o r r e l a t i o n s were f o u n d between S t a t e o r T r a i t a n x i e t y and number o f t r e a t m e n t s . T h i s h o l d s t r u e w h e t h e r i t i s number o f t r e a t m e n t s o r t r e a t m e n t v e r s u s no t r e a t m e n t . I t may be t h a t some o t h e r f a c t o r , p e r h a p s a s s o c i a -t e d w i t h t h e a d m i n i s t r a t i o n o f t h e S T A I , had t h e e f f e c t o f g e n e r a l l y l o w e r i n g a n x i e t y s c o r e s and r e p o r t e d a n x i e t y . Some p o s s i b i l i t i e s a r e d i s c u s s e d i n S e c t i o n 5. 65 C o r r e l a t i o n s between S - A n x i e t y and T - A n x i e t y s c a l e s S p i e l b e r g e r (1966, 1972) r e p o r t s t h a t t h e r e w i l l be h i g h e r c o r r e l a t i o n s between S t a t e a n x i e t y and T r a i t a n x i e t y i n s o c i a l - e v a l u a t i v e s i t u a t i o n s and l o w e r c o r r e l a t i o n s i n p h y s i c a l d a n g e r s i t u a t i o n s . He (1983) c i t e s a median c o r r e l a t i o n o f r = .65 f o r t h e s e v e n s a m p l e s w h i c h c o m p r i s e h i s n o r m a t i v e p o p u l a t i o n . The c o r r e l a t i o n between S t a t e and T r a i t s c o r e s i n t h i s s t u d y i s r = .47. The d i f f e r e n c e between t h e s t u d y ' s f i n d i n g s and t h o s e o f S p i e l b e r g e r may be due t o t h e more p h y s i c a l n a t u r e o f t h e t h r e a t i m p l i e d by t h e d i a g n o s i s o f c a n c e r . HCPS s c o r e s and S t a t e a n x i e t y s c o r e s . Spearman's r a n k c o r r e l a t i o n s done between t h e o v e r a l l HCPS s c o r e s ( c o r r e c t e d f o r t i e s ) and t h e S t a t e a n x i e t y s c o r e s g i v e a c o r r e l a t i o n o f r = -.49 c o r r e s -p o n d i n g t o a s i g n i f i c a n c e l e v e l o f p_ < .001. T h i s v e r y s t r o n g c o r r e l a t i o n i n d i c a t e s t h a t s u b j e c t s w i t h h i g h e r S t a t e a n x i e t y had low HCPS s c o r e s and p r e f e r r e d a f f e c -t i v e / s u p p o r t i n t e r v e n t i o n t o t h e p r o v i s i o n o f i n f o r m a -t i o n . The r e v e r s e was a l s o t r u e i n t h a t s u b j e c t s w i t h l o w e r S t a t e a n x i e t y s c o r e s p r e f e r r e d t h e i n f o r m a t i o n i n t e r v e n t i o n . I n o r d e r t o g e t a b e t t e r g r a s p o f e x a c t l y w h i c h i t e m s c o n t r i b u t e d t o t h e c o r r e l a t i o n , a s e r i e s o f c h i -s q u a r e t e s t s was done. The sample was d i v i d e d i n t o t h i r d s c o r r e s p o n d i n g t o low, m i d d l e and h i g h S t a t e 66 a n x i e t y s c o r e s . T h e s e g r o u p s were t h e n t e s t e d a g a i n s t t h e c o g n i t i v e / a f f e c t i v e c h o i c e f o r e a c h HCPS i t e m . S i g n i f i c a n t r e s u l t s were a c h i e v e d f o r i t e m s 4 and 6 and a v e r y c l o s e t o s i g n i f i c a n t r e s u l t f o r i t e m 2. F o r i t e m 4 ( r a d i o t h e r a p y s t a r t s i n 2 d a y s ) t h e low a n x i e t y g r o u p ( S t a t e s c o r e < 26) c h o s e t h e i n f o r m a t i o n o p t i o n by an 11 t o 1 r a t i o . I n t h e h i g h a n x i e t y g r o u p ( S t a t e s c o r e > 3 3 ) , o n l y 4 c h o s e i n f o r m a t i o n w h i l e 12 c h o s e t o t a l k a b o u t t h e i r f e e l i n g s . The m i d d l e g r o u p was a l m o s t e v e n l y s p l i t between t h e two o p t i o n s . T h i s p a t t e r n i s s i g n i f -i c a n t a s X2 (2, N = 40) = 12.66, p_ < .002. F o r i t e m 6 ( s i d e e f f e c t s o f r a d i a t i o n ) a l l 12 o f t h e low a n x i e t y g r o u p c h o s e i n f o r m a t i o n w h i l e t h e h i g h a n x i e t y g r o u p was e v e n l y s p l i t . The m i d d l e g r o u p o c c u p i e d an i n t e r m e d i a t e p o s i t i o n . T h i s i s s i g n i f i c a n t a s X2 (2, N = 40) = 8.65, p_ < .02. Item 2 (new d i a g n o s t i c t e s t i m m e d i a t e l y ) had a X 2 (2, N = 40) = 5.87, p_ < .06. The l o w e r a n x i e t y g r o u p c h o s e i n f o r m a t i o n on a l l t h r e e i t e m s by an o v e r w h e l m i n g m a r g i n w h i l e t h e h i g h e r a n x i e t y g r o u p e i t h e r c h o s e t h e a f f e c t i v e o p t i o n o r was s p l i t between t h e two o p t i o n s . HCPS s c o r e s and T r a i t a n x i e t y s c o r e s . C o r r e l a t i o n s between t h e summed HCPS S c o r e s and t h e T r a i t A n x i e t y s c o r e s were n o t s i g n i f i c a n t ( r = - 0 . 2 0 ) . When t h e T r a i t s c o r e s were u s e d t o g r o u p t h e sample i n t o a p p r o x i m a t e t h i r d s and c h i - s q u a r e t e a t s done f o r t h e 67 i n d i v i d u a l i t e m s , no s i g n i f i c a n t r e l a t i o n s h i p s were f o u n d . S e c t i o n 5 - O t h e r F i n d i n g s  I n t r o d u c t i o n • I n a d d i t i o n t o t h e i n f o r m a t i o n g a t h e r e d i n r e s p o n s e t o t h e s t u d y q u e s t i o n s , t h e s u b j e c t s p r e s e n t e d t h e r e s e a r c h e r w i t h o t h e r , a n e c d o t a l , i n f o r m a t i o n . As t h e s e comments began t o p r e s e n t r e g u l a r p a t t e r n s , t h e y were r e c o r d e d by t h e r e s e a r c h e r . A summary and d i s c u s s i o n o f t h e s u b j e c t s ' comments i s p r e s e n t e d i n f o u r p a r t s . The f i r s t h a s t o do w i t h t h e a t t i t u d e o f t h e s u b j e c t s t o w a r d s t a k i n g p a r t i n t h i s o r any o t h e r s t u d y . The s e c o n d c o n s i s t s o f comments a b o u t t h e q u e s t i o n n a i r e and o t h e r f o r m s u s e d i n t h e s t u d y . The t h i r d p a r t o f t h i s s e c t i o n i s an e x a m i n a t i o n o f t h e s u b j e c t s ' s t a t e m e n t s a b o u t i n f o r m a t i o n and t h e i r own i n f o r m a t i o n - s e e k i n g b e h a v i o u r s . Many o f t h e s u b j e c t s s p o k e a b o u t t h e i r p h y s i c a l p r o b l e m s i n g a t h e r i n g i n f o r m a t i o n , and t h e s e comments a r e c o l l e c t e d i n p a r t f o u r o f t h i s s e c t i o n . The f i n d i n g s i n t h i s s e c t i o n a r e d e r i v e d f r o m v o l u n t a r y comments and t h e r e f o r e n o t a l l s u b j e c t s a r e r e p r e s e n t e d . No a b s o l u t e n u m e r i c a l i n f o r m a t i o n i s a v a i l a b l e on how many s u b j e c t s commented on a g i v e n t o p i c . A t t h e same t i m e , i t i s p o s s i b l e t o r a n k o r d e r comments on r e l a t e d t o p i c s . S u b s e q u e n t s t u d i e s may p u r s u e t h e s e i d e a s f u r t h e r . 68 A t t i t u d e s o f s u b i e c t s . I f t h e r e i s any o v e r a l l i m p r e s s i o n t o be g a t h e r e d f r o m t h i s g r o u p o f c a n c e r p a t i e n t s i t i s t h a t t h e y were e a g e r t o t a l k . The r e s e a r c h e r was i m p r e s s e d w i t h t h e i r e a g e r n e s s and w i l l i n g n e s s t o t a l k a b o u t t h e m s e l v e s and t o v o l u n t e e r comments a b o u t t h e q u e s t i o n n a i r e s and t h e i r e x p e r i e n c e s . F o r many s u b j e c t s , t h i s was t h e i r f i r s t o p p o r t u n i t y t o l o o k a t and examine c o m p r e h e n s i v e l y t h e i r e x p e r i e n c e s d u r i n g t h e d i a g n o s t i c and t r e a t m e n t p h a s e s o f t h e i r i l l n e s s . The s u b j e c t s v o l u n t e e r e d t h r e e common r e a s o n s f o r w a n t i n g t o p a r t i c i p a t e i n t h e s t u d y . The r e a s o n most commonly g i v e n was t h e d e s i r e t o l e a r n more a b o u t t h e i r i l l n e s s . T h e s e s u b j e c t s r e m a r k e d t h a t t h e y wanted more i n f o r m a t i o n t h a n t h e y had r e c e i v e d d u r i n g t h e d i a g n o s t i c p e r i o d and saw t h e s t u d y a s an o p p o r t u n -i t y t o have d i s c u s s i o n s w i t h a k n o w l e d g e a b l e p e r s o n . T h i s p r e s e n t e d somewhat o f a dilemma f o r t h e r e s e a r c h e r who i s a c l i n i c i a n w i t h s i m i l a r p a t i e n t s . Where i t was p o s s i b l e w i t h o u t b i a s i n g t h e i n s t r u m e n t r e s p o n s e s , t h e r e s e a r c h e r a n swered t h e p a t i e n t s ' q u e s t i o n s . The s e c o n d most common r e a s o n f o r p a r t i c i p a t i o n was t h a t t h e y were b o r e d and had p l e n t y o f t i m e . More t h a n o n e - h a l f o f t h e s u b j e c t s were f r o m a r e a s o u t s i d e o f V a n c o u v e r and were s t a y i n g i n l o c a l a c c o mmodation. They knew few p e o p l e l o c a l l y and were e i t h e r p h y s i c a l l y u n a b l e o r u n w i l l i n g t o engage i n many a c t i v i t i e s o u t s i d e 69 o f t h e i r t r e a t m e n t s . They saw p a r t i c i p a t i o n i n t h e s t u d y a s an o p p o r t u n i t y t o s o c i a l i z e and a s a d i s t r a c t i o n . The t h i r d most common r e a s o n c i t e d f o r p a r t i c i p a t -i o n was t h a t t h e y welcomed an o p p o r t u n i t y t o t a l k a b o u t what had happened t o them. Comments a b o u t t h e q u e s t i o n n a i r e s . The m a j o r i t y o f t h e s u b j e c t s t o o k l o n g e r t h a n t h e e x p e c t e d amount o f t i m e (20 m i n u t e s a c c o r d i n g t o Dodd (1985) who had s u b j e c t s work a l o n e ) t o c o m p l e t e t h e i n s t r u m e n t . I n many s i t u a t i o n s , i t t o o k them f o r t y t o s i x t y m i n u t e s t o r e s p o n d t o t h e 7 i t e m s b e c a u s e t h e y c o n s t a n t l y t a l k e d a b o u t t h e i r own p r e - d i a g n o s i s and b e g i n n i n g t r e a t m e n t e x p e r i e n c e s . They seemed t o be t r y i n g t o compare t h e h y p o t h e t i c a l s i t u a t i o n s on t h e HCPS w i t h t h e a c t u a l e x p e r i e n c e s t h a t t h e y had gone t h r o u g h and t o come up w i t h a p r e f e r e n c e f o r c a r e b a s e d on t h e n u r s i n g and m e d i c a l c a r e t h a t t h e y had a c t u a l l y r e c e i v e d . The s u b j e c t s t o o k an even l o n g e r p e r i o d o f t i m e t o c o m p l e t e t h e S T A I . F o r many o f t h e s u b j e c t s , t h e f e e l i n g - o r i e n t e d i t e m s p r o v i d e d an o p p o r t u n i t y t o d e s c r i b e t h e m s e l v e s and t o t a l k a b o u t t h e c h a n g e s i n t h e i r l i v e s i . e . , t h e i r i l l n e s s , d e a t h o f a s p o u s e , p r e v i o u s major i l l n e s s e s o r s u r g e r i e s , c h a n g e s i n j o b s , d i v o r c e . The o p p o r t u n i t y t o t a l k o u t a n x i e t y - r e l a t e d 70 f e e l i n g s a s t h e y o c c u r r e d may have c o n t r i b u t e d t o t h e low mean S t a t e a n x i e t y s c o r e s . Comments a b o u t i n f o r m a t i o n . None o f t h e s u b j e c t s v o l u n t e e r e d t h a t t h e y had been g i v e n t o o much i n f o r m a t i o n o r were e v e r overwhelmed w i t h i n f o r m a t i o n f r o m h e a l t h c a r e w o r k e r s . Men more o f t e n t h a n women t r i e d t o e x p l a i n t h e i r c h o i c e o f a c o g n i t i v e / i n f o r m a t i o n p r e f e r e n c e o r , more a c c u r a t e l y , t h e i r f a i l u r e t o c h o o s e t h e a f f e c t i v e i n t e r v e n t i o n b e c a u s e t h e y a s i n d i v i d u a l s d i d n o t o v e r t l y e x p r e s s t h e i r f e e l i n g s . I f t h e y d i d ( a c c o r d i n g t o t h e s u b j e c t s ) , s t a f f m i g h t t h i n k them " s e n i l e " and n o t c a p a b l e o f managing t h e i r own a f f a i r s . S u b j e c t s who had had p r e v i o u s s e r i o u s i l l n e s s e s o r who had u n d e r g o n e ma j o r s u r g e r i e s ( c o r o n a r y b y p a s s , c a r d i a c s u r g e r i e s ) commented t h a t t h e y u s e d t h e same p a t t e r n s o f i n f o r m a t i o n - s e e k i n g a s t h e y had done p r e v i o u s l y . T h e s e s u b j e c t s r e p o r t e d t h a t t h e y had l e a r n e d f r o m t h e i r p r e v i o u s i l l n e s s t h e v a l u e o f i n f o r m a t i o n , how t o s e e k i t o u t , who t o g e t i t f r o m , and who t o c o n v e y i t t o . T h e s e s u b j e c t s r e p o r t e d v e r y low l e v e l s o f d i s t r e s s and a n x i e t y and s t r o n g p r e f e r e n c e s f o r i n f o r m a t i o n i n e v e r y s i t u a t i o n . T h i s was s u c h a marked a s s o c i a t i o n t h a t a q u e s t i o n a b o u t p r i o r i l l n e s s o r h o s p i t a l i z a t i o n s h o u l d p e r h a p s have been p a r t o f t h e o r i g i n a l s t u d y d e s i g n . Comments a b o u t i n f o r m a t i o n and s e n s o r y p r o b l e m s . Some o f t h e i n t e r e s t and d e s i r e f o r more i n f o r m a t -i o n may be a s s o c i a t e d w i t h t h e s e n s o r y d e f i c i t s o f t h e o l d e r s u b j e c t s . Many o f t h e s u b j e c t s r e p o r t e d t h a t t h e y o f t e n had t r o u b l e r e a d i n g o r h e a r i n g . The r e s e a r c h e r d i s c o v e r e d t h i s when many o f t h e s u b j e c t s r e m a r k e d t h a t t h e y had f o r g o t t e n t h e i r "good" r e a d i n g g l a s s e s a t home o r t h a t t h e b a t t e r i e s i n t h e i r h e a r i n g a i d s w e r e n ' t w o r k i n g w e l l . The s u b j e c t s had d i f f i c u l t y r e a d i n g t h e s m a l l p r i n t on t h e HCPS and t h e STAI q u e s t i o n n a i r e s and t h e r e s e a r c h e r s o m etimes had t o r e a d b o t h t h e i n s t r u c t -i o n s and t h e i t e m s a l o u d t o them. Some o f t h e e l d e r l y s u b j e c t s r e p o r t e d t h a t t h e y o f t e n had d i f f i c u l t y u n d e r s t a n d i n g when m e d i c a l o r n u r s i n g p e r s o n n e l t a l k e d t o them and e x p l a i n e d s o m e t h i n g b e c a u s e o f h e a r i n g d i f f i c u l t i e s . I n a s i m i l a r v e i n , some s u b j e c t s r e p o r t e d t h a t , b e c a u s e o f t h e s i z e o f t h e p r i n t , t h e y r e a l l y c o u l d n o t r e a d t h e c o n s e n t f o r m s t h a t t h e y had s i g n e d . They were r e l u c t a n t t o t e l l t h e h e a l t h c a r e p e r s o n n e l and e x p o s e t h e i r i n a b i l i t y . C l e a r l y , some o f t h e s u b j e c t s had d i f f i c u l t y w i t h b o t h o r a l and w r i t t e n c o m m u n i c a t i o n s b e c a u s e o f s e n s o r y d e f i c i t s . I n s p i t e o f t h e s e d e f i c i t s , t h e y r e p o r t e d a r e l u c t a n c e t o ask f o r a d d i t i o n a l i n f o r m a t i o n o r f o r c l a r i f i c a t i o n o f i n f o r m a t i o n g i v e n . N e i t h e r men n o r women wanted p e o p l e t o t h i n k t h a t t h e y were o l d and n o t c a p a b l e o f managing 72 t h e i r own a f f a i r s . A n o t h e r r e a s o n f o r some s u b j e c t s ' r e l u c t a n c e t o p u r s u e c o r r e c t i n f o r m a t i o n was t h e i r u n f a m i l i a r i t y w i t h h o s p i t a l s o u r c e s and c h a n n e l s o f i n f o r m a t i o n . O f t e n s u b j e c t s had g r e a t d i f f i c u l t y n a v i g a t i n g t h r o u g h t h e t r e a t m e n t s y s t e m and c o u l d n o t i d e n t i f y a p p r o p r i a t e and a c c e s s i b l e s o u r c e s o f i n f o r m a t i o n . Summary In t h i s c h a p t e r , t h e sample h a s been d e s c r i b e d i n t e r m s o f age, s e x , m a r i t a l s t a t u s , e d u c a t i o n a l l e v e l s , e t h n i c i t y , o c c u p a t i o n , home r e g i o n , p e r f o r m a n c e s t a t u s , d i s e a s e s i t e , number o f r a d i o t h e r a p y t r e a t m e n t s , and n a t u r e o f t r e a t m e n t . R e s p o n s e s t o t h e HCPS were examined i t e m - b y - i t e m and a s a summed s c o r e . When p r e s e n t e d , on t h e HCPS, w i t h a c h o i c e between r e c e i v i n g i n f o r m a t i o n and r e c e i v i n g a s u p p o r t i v e i n t e r v e n t i o n f r o m h e a l t h c a r e w o r k e r s , t h e s u b j e c t s i n t h i s sample o v e r w h e l m i n g l y p r e f e r r e d t h e i n f o r m a t i o n o p t i o n . T h e r e were s i g n i f i c a n t d i f f e r e n c e s i n t h e p a t t e r n o f r e s p o n s e s t o d i f f e r e n t HCPS i t e m s . The d i f f e r e n c e may be a c c o u n t e d f o r by t h e v a r i a t i o n i n c l i n i c a l s i t u a t i o n p r e s e n t e d i n t h e t e x t o f t h e i n d i v i d -u a l i t e m s . F o r i n s t a n c e . Item 1 d e s c r i b e s an a n x i o u s p r e - s u r g i c a l p a t i e n t . The m a j o r i t y o f t h e s u b j e c t s c h o s e t h e a f f e c t i v e o p t i o n . When r a d i o t h e r a p y i s recommended a t t h e t r e a t m e n t o f c h o i c e i n Item 3, 38 o u t 73 o f 40 o f t h e s u b j e c t s p r e f e r r e d i n f o r m a t i o n . No a s s o c -i a t i o n was f o u n d between t h e c o n c u r r e n t v a l i d i t y i t e m and HCPS s c o r e s . W i t h o n l y two e x c e p t i o n s , i d e n t i f i e d below, t h e p r e f e r e n c e f o r i n f o r m a t i o n was c o n s t a n t , r e g a r d l e s s o f t h e d e m o g r a p h i c d i f f e r e n c e s between s u b j e c t s . E t h n i c i t y and n a t u r e o f t r e a t m e n t were f o u n d t o be p r e d i c t i v e o f t h e p r e f e r e n c e f o r i n f o r m a t i o n on i s o l a t e d i t e m s . S u b j e c t s o f B r i t i s h o r i g i n p r e f e r r e d t h e s u p p o r t o p t i o n o v e r i n f o r m a t i o n on Item 1. On Item 2 s u b j e c t s f o r whom r a d i o t h e r a p y was t h e p r i m a r y t r e a t m e n t p r e f e r r e d i n f o r m a t i o n f a r more t h a n t h o s e f o r whom r a d i o t h e r a p y f o l l o w e d s u r g e r y . A n x i e t y s c o r e s were l o w e r t h a n t h e l i t e r a t u r e s u g g e s t s c o n s i d e r i n g t h e p o t e n t i a l l y t h r e a t e n i n g n a t u r e o f c a n c e r d i a g n o s i s and t r e a t m e n t . S e v e r a l e x p l a n a t i o n s a r e o f f e r e d f o r t h e l o w e r t h a n e x p e c t e d s c o r e s b u t none i s e n t i r e l y s a t i s f a c t o r y . A s i g n i f i c a n t n e g a t i v e c o r r e l a t i o n was i d e n t i f i e d between S t a t e a n x i e t y s c o r e s and t h e summed HCPS s c o r e . S u b j e c t s who s c o r e d h i g h e r on t h e S t a t e s c a l e o f t h e STAI were l i k e l y t o p r e f e r t h e s u p p o r t i v e o p t i o n w h i l e t h o s e w i t h l o w e r S t a t e a n x i e t y s c o r e s p r e f e r r e d i n f o r m a -t i o n <p_ < .0 0 1 ) . The same r e l a t i o n s h i p h e l d f o r two i n d i v i d u a l i t e m s o f t h e HCPS. J u s t p r i o r t o commencing r a d i o t h e r a p y ( I t e m 4) and when l e a r n i n g a b o u t t h e 74 s i d e - e f f e c t s o f r a d i o t h e r a p y (Item 6 ) , t h e l o w e r S t a t e a n x i e t y s c o r e g r o u p p r e f e r r e d i n f o r m a t i o n s i g n i f i c a n t l y more (p_ < .02) t h a n d i d t h o s e w i t h h i g h e r a n x i e t y s c o r e s . I n t h e p r o c e s s o f c o n d u c t i n g i n t e r v i e w s and a d m i n i s t e r i n g t h e s t u d y i n s t r u m e n t s , t h e r e s e a r c h e r c o l l e c t e d a number o f i n c i d e n t a l f i n d i n g s . The s u b j e c t s r e p o r t e d s e v e r a l r e a s o n s f o r t a k i n g p a r t i n t h e s t u d y i n c l u d i n g ; s e e k i n g more i n f o r m a t i o n f o r t h e m s e l v e s , r e l i e v i n g boredom, and f i n d i n g an o p p o r t u n i t y t o t a l k o u t t h e i r f e e l i n g s a b o u t t h e d i a g n o s i s and t r e a t m e n t p r o c e s s . The a d m i n i s t r a t i o n o f t h e s t u d y i n s t r u m e n t s b r o u g h t o u t two s o r t s o f comments; one a b o u t t h e c o n t e n t o f t h e HCPS and STAI i t e m s and a n o t h e r a b o u t t h e i r f o r m a t . Many o f t h e s u b j e c t s were prompted by t h e c o n t e n t o f t h e i t e m s t o t a l k a b o u t t h e i r own e x p e r i e n c e s and a b o u t t h e i r f e e l i n g s . T h i s t a l k i n g - o u t p r o c e s s s l o w e d t h e c o m p l e t i o n o f t h e i n s t r u m e n t s b u t p r o v i d e d many o f t h e s e i n c i d e n t a l f i n d i n g s . Some o f t h e s u b j e c t s r e v e a l e d s e n s o r y d e f i c i t s w h i c h made i t d i f f i c u l t f o r them t o r e a d t h e i n s t r u m e n t s and, i n o t h e r s i t u a t i o n s , t o r e a d o t h e r h o s p i t a l f o r m s o r p r o p e r l y h e a r and u n d e r s t a n d what was s a i d t o them. S u b j e c t s w i t h p r e v i o u s s e r i o u s i l l n e s s e s o r s u r g e r i e s were b e t t e r a b l e t o a c c e s s and u s e i n f o r m a t i o n and t o f i n d a p p r o p r i a t e 75 s o u r c e s f o r i n f o r m a t i o n . S u b j e c t s w i t h o u t t h a t e x p e r -i e n c e had more d i f f i c u l t y i n i n f o r m a t i o n - s e e k i n g . 76 CHAPTER 5 SUMMARY, CONCLUSIONS, IMPLICATIONS, AND RECOMMENDATIONS T h i s s t u d y was d e s i g n e d t o d e s c r i b e h e a l t h c a r e p r e f e r e n c e s among c a n c e r p a t i e n t s r e c e i v i n g r a d i o t h e r a p y f o r t h e f i r s t t i m e . S e v e r a l d e m o g r a p h i c v a r i a b l e s and a measure o f a n x i e t y were examined f o r t h e i r e f f e c t on p r e f e r e n c e . An o v e r v i e w o f t h e s t u d y i s p r e s e n t e d i n t h i s c h a p t e r f o l l o w e d by c o n c l u s i o n s , i m p l i c a t i o n s f o r n u r s i n g p r a c t i c e and r e c o m m e n d a t i o n s f o r r e s e a r c h . Summary A r e v i e w o f t h e l i t e r a t u r e on how c a n c e r p a t i e n t s c o p e w i t h t h e d i a g n o s i s and t r e a t m e n t o f t h e i r d i s e a s e i n d i c a t e s t h a t i n f o r m a t i o n - s e e k i n g and s e e k i n g e m o t i o n a l s u p p o r t a r e among t h e most common c o p i n g s t r a t e g i e s . T h e r e i s l i t t l e l i t e r a t u r e on what k i n d s o f i n t e r v e n t -i o n s c a n c e r p a t i e n t s p e r c e i v e a s h e l p f u l p r i o r t o o r d u r i n g t h e i r r a d i o t h e r a p y o r on t h e e f f e c t o f a n x i e t y on t h e i r p r e f e r e n c e f o r i n t e r v e n t i o n s . T h i s d e s c r i p t i v e e x p l o r a t o r y s t u d y was u n d e r t a k e n a t t h e C a n c e r C o n t r o l Agency i n V a n c o u v e r , B.C. u s i n g a d e m o g r a p h i c q u e s t i o n n a i r e , t h e H e a l t h C a r e P r e f e r e n c e S u r v e y [HCPS], and t h e S t a t e - T r a i t A n x i e t y I n v e n t o r y [ S T A I ] . D a t a were c o l l e c t e d f r o m 40 r a d i o t h e r a p y p a t i e n t s who met t h e e s t a b l i s h e d c r i t e r i a . N o n p a r a m e t r i c s t a t i s t i c a l m e a s ures were u s e d t o d e t e r m i n e t h e e x t e n t and d i r e c t i o n o f r e l a t i o n s h i p s between t h e summed and 77 i t e m - b y - i t e m HCPS s c o r e s , t h e d e m o g r a p h i c v a r i a b l e s and t h e m e asures o f a n x i e t y . The s t u d y s a m ple was d e s c r i b e d a c c o r d i n g t o age, s e x , m a r i t a l s t a t u s , e d u c a t i o n a l l e v e l s , e t h n i c i t y , o c c u p a t i o n , home r e g i o n , p e r f o r m a n c e s t a t u s , d i s e a s e s i t e , and number o f r a d i o t h e r a p y t r e a t m e n t s . The sample was a l m o s t e q u a l l y d i v i d e d between men and women w i t h an age r a n g e f r o m 36-79 y r s . J u s t o v e r o n e - h a l f <24) o f t h e s a m ple was m a r r i e d a t t h e t i m e o f t h e s t u d y . The e d u c a t i o n a l l e v e l s r a n g e d f r o m 8 t o 20 y e a r s o f f o r m a l s c h o o l i n g w i t h a median o f 12 y e a r s . The l a r g e s t s i n g l e e t h n i c g r o u p i n t h e sample was B r i t i s h , 20 o f t h e 35 s u b j e c t s who i n d i c a t e d a b a c k g r o u n d . The r e s t i n c l u d e d German, F r e n c h and o t h e r E u r o p e a n b a c k g r o u n d s . S u b j e c t s i n c l u d e d homemakers, p r o f e s s i o n a l s , members o f t h e s k i l l e d t r a d e s and s m a l l e r numbers o f c l e r i c a l and a g r i c u l t u r a l w o r k e r s . They were a p p r o x i m a t e l y e v e n l y d i v i d e d between t h o s e who came f r o m t h e G r e a t e r V a n c o u v e r a r e a , and t h o s e who came f r o m t h e i n t e r i o r o f t h e p r o v i n c e . K a r n o f s k y p e r f o r m a n c e s c o r e s r a n g e d between 70 and 90 w i t h t h e median a t 80 i n d i c a t i n g t h a t t h e s u b j e c t s were a b l e t o c o p e w i t h most o f t h e a c t i v i t i e s o f d a i l y l i v i n g . Most o f t h e more common d i s e a s e s i t e s o t h e r t h a n c a n c e r o f t h e l u n g were f o u n d among t h e s u b j e c t s and t h e y had r e c e i v e d 0 t o 5 r a d i o t h e r a p y t r e a t m e n t s 78 e a c h (median 3 ) . F o r 16 o f t h e s u b j e c t s , r a d i o t h e r a p y was t h e p r i m a r y f o r m o f t r e a t m e n t ; t h e r e s t had had p r i o r s u r g e r y . I n f o r m a t i o n a b o u t p a t i e n t p r e f e r e n c e s f o r h e a l t h c a r e i n t e r v e n t i o n s was c o l l e c t e d on t h e H e a l t h C a r e P r e f e r e n c e S u r v e y [HCPS]--a 7 - i t e m f o r c e d c h o i c e q u e s t i o n n a i r e . E a c h i t e m o f t h e HCPS c o n s i s t s o f a s h o r t d e s c r i p t i o n o f a s i t u a t i o n a p a t i e n t m i g h t f a c e d u r i n g t h e d i a g n o s i s and t r e a t m e n t p r o c e s s and t h e s u b j e c t i s a s k e d t o i n d i c a t e w h e t h e r , i n t h a t s i t u a t i o n , he o r s h e would p r e f e r a c o g n i t i v e o r an a f f e c t i v e i n t e r v e n t i o n . R e s p o n s e s t o t h e HCPS were examined f r o m two p e r s p e c t i v e s — a s o v e r a l l s c o r e s and on an i t e m - b y -i t e m b a s i s . S u b j e c t s o v e r w h e l m i n g l y p r e f e r r e d i n f o r m a -t i o n i n t e r v e n t i o n s o v e r a f f e c t i v e i n t e r v e n t i o n s (mean summed s c o r e 4.98 o u t o f 7 ) . Two i t e m s were f o u n d t o be s i g n i f i c a n t l y d i f f e r e n t f r o m t h e o t h e r s a s r e g a r d s t h e s t r e n g t h o f t h e p r e f e r e n c e f o r t h e i n f o r m a t i o n i n t e r v e n -t i o n . Item 1 p r e s e n t s a p r e - s u r g i c a l s i t u a t i o n i n whi c h t h e p a t i e n t i s d e s c r i b e d a s r e s t l e s s o r a n x i o u s . The s u b j e c t s (23 o f 40) c h o s e t h e a f f e c t i v e / s u p p o r t i n t e r v e n t i o n o v e r t h e c o g n i t i v e / i n f o r m a t i o n i n t e r v e n t -i o n . I n i t e m 3, t h e p a t i e n t h a s been a d v i s e d t h a t r a d i o t h e r a p y i s t h e optimum t r e a t m e n t f o r h i s c o n d i t i o n . I n t h i s c a s e , t h e s u b j e c t s o v e r w h e l m i n g l y (38 o u t o f 40) c h o s e t h e i n f o r m a t i o n o p t i o n . 79 P r e f e r e n c e f o r t h e c o g n i t i v e / i n f o r m a t i o n i n t e r v e n -t i o n a p p e a r e d t o be i n d e p e n d e n t o f t h e m a j o r i t y o f t h e d e m o g r a p h i c v a r i a b l e s . Some v a r i a b l e s were a s s o c i a t e d w i t h a p r e f e r e n c e f o r t h e i n f o r m a t i o n i n t e r v e n t i o n b u t o n l y w i t h r e s p e c t t o s e l e c t e d i t e m s . P a t i e n t s who d e s c r i b e d t h e m s e l v e s a s b e i n g o f B r i t i s h d e s c e n t p r e f e r r e d a f f e c t i v e i n t e r v e n t i o n s on i t e m l - - a n x i o u s b e f o r e upcoming s u r g e r y - - m o r e s t r o n g l y t h a n t h o s e w i t h o t h e r b a c k g r o u n d s . P a t i e n t s f o r whom r a d i a t i o n was t h e p r i m a r y mode o f t r e a t m e n t p r e f e r r e d t h e i n f o r m a t i o n i n t e r v e n t i o n on i t e m 2 - - s t r a n g e new d i a g n o s t i c t e s t i m m e d i a t e l y — m u c h more t h a n t h o s e f o r whom r a d i a t i o n was an a d j u v a n t t o p r i o r s u r g e r y . A l s o on i t e m 2, men p r e f e r r e d t h e i n f o r m a t i o n i n t e r v e n t i o n much more s t r o n g l y t h a n women. The a n x i e t y s c o r e s a s measured by t h e S t a t e T r a i t A n x i e t y I n v e n t o r y were l o w e r t h a n e x p e c t e d c o n s i d e r i n g t h e r e s u l t s o f o t h e r s t u d i e s i n w h i c h p a t i e n t s a r e i n s t r e s s f u l s i t u a t i o n s . B o t h t h e n o r m a t i v e d a t a p r e s e n t e d i n t h e STAI manual and o t h e r s t u d i e s on m e d i c a l , s u r g i c a l and p s y c h i a t r i c p a t i e n t s i n d i c a t e t h a t t h e means f o r S t a t e a n x i e t y s c o r e s , and o f t e n t h e T r a i t a n x i e t y s c o r e s a s w e l l , a r e i n t h e mid t o low 40's o u t o f 80. The means f o r t h e s t u d y were 33.13 and 32.86 f o r S t a t e and T r a i t a n x i e t y , r e s p e c t i v e l y . T h e s e s c o r e s compare f a v o u r a b l y w i t h t h o s e f o r h e a l t h y , u n s t r e s s e d 80 w o r k i n g a d u l t s ( S t a t e M = 33.35, T r a i t M = 3 2 . 8 3 ) . No t o t a l l y s a t i s f a c t o r y e x p l a n a t i o n f o r t h e l o w e r s c o r e s i s known a l t h o u g h s e v e r a l a r e o f f e r e d . S i g n i f i c a n t a s s o c i a t i o n s were f o u n d between S t a t e a n x i e t y s c o r e s and o v e r a l l HCPS s c o r e s and between t h e S t a t e a n x i e t y s c o r e and s c o r e s on s e v e r a l i n d i v i d u a l i t e m s . T h o s e s u b j e c t s w i t h h i g h S t a t e a n x i e t y s c o r e s were f o u n d t o have low o v e r a l l HCPS s c o r e s , t h a t i s , t h e y p r e f e r r e d a f f e c t i v e o v e r i n f o r m a t i o n i n t e r v e n t i o n s f r o m h e a l t h c a r e p e r s o n n e l w h i l e t h o s e w i t h l o w e r a n x i e t y s c o r e s p r e f e r r e d t h e i n f o r m a t i o n i n t e r v e n t i o n . The r e l a t i o n s h i p between h i g h S t a t e a n x i e t y s c o r e and a p r e f e r e n c e f o r s u p p o r t , and between l o w e r S t a t e a n x i e t y s c o r e s and a p r e f e r e n c e f o r t h e i n f o r m a t i o n i n t e r v e n t i o n h o l d s p a r t i c u l a r l y s t r o n g l y f o r i t e m s 4 and 6 ( j u s t p r i o r t o r a d i o t h e r a p y and s i d e e f f e c t s o f r a d i o t h e r a p y , r e s p e c t i v e l y ) . I n c i d e n t a l f i n d i n g s were c o l l e c t e d by t h e r e s e a r c h e r when t h e s u b j e c t s v o l u n t e e r e d comments d u r i n g d a t a c o l l e c t i o n . The m a j o r i t y o f t h e s u b j e c t s r e p o r t e d t h a t t h e y had wanted t o p a r t i c i p a t e i n t h e s t u d y i n o r d e r t o l e a r n more a b o u t t h e i r d i s e a s e and t r e a t m e n t s . Some o f t h e e l d e r l y men r e p o r t e d t h a t t h e y c h o s e t h e i n f o r m a t i o n i t e m s more o f t e n t h a n t h o s e d e s c r i b i n g s u p p o r t b e c a u s e t h e y d i d n o t e x p r e s s t h e i r f e e l i n g s e a s i l y . They s t a t e d t h a t i f t h e y e x p r e s s e d o r a s k e d f o r 81 support., h e a l t h c a r e p r o f e s s i o n a l s m i g h t t h i n k them " s e n i l e " and i n c a p a b l e o f h a n d l i n g t h e i r own a f f a i r s . Many o f t h e e l d e r l y s u b j e c t s r e p o r t e d s e n s o r y d e f i c i t s w h i c h made r e a d i n g t h e q u e s t i o n n a i r e s an i m p o s s i b l e t a s k . O f t e n , t h e e l d e r l y s u b j e c t s s t a t e d t h a t t h e y c o u l d n o t u n d e r s t a n d o r a l c o m m u n i c a t i o n s f r o m h e a l t h c a r e w o r k e r s b e c a u s e o f h e a r i n g p r o b l e m s . Most s u b j e c t s w i t h t h e s e d e f i c i t s were r e l u c t a n t t o a c k n o w l e d g e them and a s k f o r a s s i s t a n c e and t h e y r e p o r t e d s i g n i n g c o n s e n t f o r m s t h a t t h e y c o u l d n o t r e a d . They d i d n o t want t o be c o n s i d e r e d " o l d " and n o t c a p a b l e o f h a n d l i n g t h e i r own a f f a i r s . Many o f t h e p a t i e n t s e x p r e s s e d a s t r o n g need f o r i n f o r m a t i o n b u t c o u l d n o t i d e n t i f y a p p r o p r i a t e and a c c e s s i b l e s o u r c e s o f i n f o r m a t i o n . C o n c l u s i o n s The f o l l o w i n g c o n c l u s i o n s may be drawn on t h e b a s i s o f t h e s t u d y r e s u l t s : 1. P a t i e n t s p r e f e r c o g n i t i v e o v e r a f f e c t i v e i n t e r v e n -t i o n s i n most s i t u a t i o n s . C l i n i c a l c i r c u m s t a n c e and t h e t i m i n g o f t h e i n t e r v e n t i o n s a p p e a r t o a f f e c t t h e i n t e r v e n t i o n p r e f e r e n c e . 2. W i t h a few e x c e p t i o n s , t h e p r e f e r e n c e f o r i n f o r m a -t i o n i n t e r v e n t i o n s i s n o t r e l a t e d t o d e m o g r a p h i c v a r i a b l e s . Some d e m o g r a p h i c o r t r e a t m e n t v a r i a b l e s a r e s i g n i f i c a n t p r e d i c t o r s o f d e s i r e d i n t e r v e n t i o n s i n s p e c i f i c s i t u a t i o n s . J u s t p r i o r t o s u r g e r y s u b j e c t s 82 w i t h B r i t i s h b a c k g r o u n d s c h o s e t h e a f f e c t i v e i n t e r v e n -t i o n more o f t e n t h a n t h o s e w i t h o t h e r b a c k g r o u n d s . C o n f r o n t e d w i t h a new d i a g n o s t i c t e s t i m m e d i a t e l y , p a t i e n t s w i t h r a d i o t h e r a p y a s t h e i r p r i m a r y mode o f t r e a t m e n t were more l i k e l y t o s e l e c t i n f o r m a t i o n o p t i o n s t h a n t h o s e who had had p r i o r s u r g e r y . I n t h e same s i t u a t i o n , men t e n d e d t o c h o o s e t h e c o g n i t i v e o p t i o n more o f t e n t h a n women. 3. A n x i e t y l e v e l i s r e l a t e d t o t h e p r e f e r e n c e f o r i n t e r v e n t i o n . P a t i e n t s who had h i g h S t a t e a n x i e t y s c o r e s p r e f e r r e d a f f e c t i v e r a t h e r t h a n c o g n i t i v e i n t e r v e n t i o n s e s p e c i a l l y on i t e m s 4 and 6. 4. G i v e n an o p p o r t u n i t y , c a n c e r p a t i e n t s want t o t a l k a b o u t t h e i r e x p e r i e n c e s and f e e l i n g s . 5. F o r any r e s e a r c h w i t h an e l d e r l y p a t i e n t p o p u l a t i o n o r one w h i c h may have s e n s o r y d e f i c i t s , s t a n d a r d i n s t r u m e n t s may need t o be m o d i f i e d w i t h , f o r i n s t a n c e , l a r g e r t y p e f a c e s and t h e e f f e c t o f a l t e r n a t e methods o f i n s t r u m e n t a d m i n i s t r a t i o n ( i . e . r e a d i n g a l o u d ) n e e d s t o be e v a l u a t e d . 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 1. C a n c e r p a t i e n t s v a r y i n t h e i r p r e f e r e n c e f o r h e a l t h c a r e i n t e r v e n t i o n s . N u r s e s c a n n o t assume t h a t a p r e f e r e n c e f o r i n f o r m a t i o n o r s u p p o r t n o t e d i n one a s s e s s m e n t w i l l r e m a i n c o n s t a n t t h r o u g h a l l s t a g e s o f d i a g n o s i s and t r e a t m e n t . 83 2. N u r s e s need t o be k n o w l e d g e a b l e a b o u t t h e p a t h o -p h y s i o l o g y and t r e a t m e n t s f o r c a n c e r b e f o r e t h e y c an e f f e c t i v e l y i n t e r v e n e and s a t i s f y t h e p a t i e n t s ' p r e f e r -e n c e s f o r c o g n i t i v e i n t e r v e n t i o n s . 3. In a s s e s s i n g l e a r n i n g n e e d s , n u r s e s s h o u l d r e c o g n i z e t h a t t h e p a t i e n t ' s l e v e l o f a n x i e t y may i n f l u e n c e r e a d i n e s s and n e e d s f o r l e a r n i n g . P a t i e n t s who have h i g h a n x i e t y l e v e l s may p r e f e r s u p p o r t i v e n u r s i n g i n t e r v e n t i o n s r a t h e r t h a n i n f o r m a t i o n a l o n e s . When p a t i e n t t e a c h i n g i s a b s o l u t e l y n e c e s s a r y f o r p a t i e n t s a f e t y o r c o m f o r t , e f f o r t s s h o u l d f i r s t be made t o r e d u c e a n x i e t y . 4. N u r s e s need t o a s s e s s f o r s e n s o r y d e f i c i t s i n e l d e r l y p a t i e n t s . F o r example, e l d e r l y p a t i e n t s may n o t be a b l e t o r e a d t h e s m a l l p r i n t when s i g n i n g c o n s e n t s . They may have o t h e r s e n s o r y d e f i c i t s w h i c h may h i n d e r t h e i r a b i l i t y t o u n d e r s t a n d p a t i e n t e d u c a t i o n m a t e r i a l s and e v e n o r a l c o m m u n i c a t i o n . 5. P a t i e n t s i n d i c a t e d t h a t t h e y want i n f o r m a t i o n n o t j u s t f r o m n u r s e s b u t f r o m e v e r y h e a l t h c a r e p r o f e s s i o n a l t h e y meet. N u r s e s s h o u l d r e c o g n i z e t h e i r r o l e a s members o f a m u l t i d i s c i p l i n a r y t e a c h i n g team p r o v i d i n g c o n s i s t e n t and c o m p r e h e n s i v e i n f o r m a t i o n f o r p a t i e n t s . 6. P a t i e n t s i n d i c a t e d t h a t t h e y p a r t i c u l a r l y wanted i n f o r m a t i o n a t t h e t i m e t h a t r a d i o t h e r a p y was f i r s t o f f e r e d t o them a s a t r e a t m e n t m o d a l i t y . I n t h e t i m i n g 84 o f p a t i e n t , e d u c a t i o n p r o g r a m s , n u r s e s need t o be aware t h a t p a t i e n t ' s d e s i r e and m o t i v a t i o n t o l e a r n may p e r h a p s be h i g h a t t h a t t i m e . 7. As c a n c e r p a t i e n t s want t o d i s c u s s t h e i r c o n c e r n s and e x p e r i e n c e s w i t h a k n o w l e d g e a b l e h e a l t h c a r e w o r k e r , n u r s e s need t o p l a n f o r and p r o v i d e o p p o r t u n i t i e s t o t a l k w i t h p a t i e n t s . Recommendations f o r F u r t h e r S t u d y 1. A r e p l i c a t i o n o f t h i s s t u d y s h o u l d be c a r r i e d o u t u s i n g a l a r g e r o v e r a l l s a m ple s i z e i n o r d e r t o i n v e s t i g -a t e t h e s e v e r a l r e l a t i o n s h i p s between d e m o g r a p h i c v a r i a b l e s and t h e HCPS w h i c h a p p r o a c h e d s i g n i f i c a n c e . T h e s e i n c l u d e : <a) p e r f o r m a n c e s t a t u s - - p a t i e n t s i n p o o r e r c o n d i t i o n t e n d e d t o p r e f e r t h e a f f e c t i v e o p t i o n on Item 2. <b) O c c u p a t i o n — m a n a g e r i a l and p r o f e s s i o n a l s u b j e c t s t e n d e d t o have h i g h e r o v e r a l l HCPS s c o r e s w h i l e homemakers had l o w e r s c o r e s , i n d i c a t i n g a p r e f e r e n c e f o r a f f e c t i v e i n t e r v e n t i o n s . ( c ) D i s e a s e s i t e — s u b j e c t s w i t h s k i n c a n c e r s were more l i k e l y t o c h o o s e c o g n i t i v e i n t e r v e n t i o n s t h a n t h o s e w i t h o t h e r d i s e a s e s i t e s . 2. F u r t h e r s t u d i e s a r e needed t o p u r s u e t h e f i n d i n g s o f s i t u a t i o n s p e c i f i c i t y i n r e l a t i o n t o p r e f e r e n c e f o r i n t e r v e n t i o n . An expanded i n s t r u m e n t , i n c l u d i n g more c l i n i c a l s i t u a t i o n s and a L i k e r t s c a l e i n s t e a d o f t h e f o r c e d c h o i c e , m i g h t b e t t e r t e s t t h e s t r e n g t h and t h e s p e c i f i c i t y o f t h e p r e f e r e n c e f o r i n t e r v e n t i o n . 85 3. S i n c e t h e t i m i n g o f n u r s i n g i n t e r v e n t i o n s t h r o u g h t h e d i a g n o s i s and t r e a t m e n t may be a c r i t i c a l v a r i a b l e i n p a t i e n t a c c e p t a n c e o f t h o s e i n t e r v e n t i o n s , f u r t h e r r e s e a r c h i s needed t o i d e n t i f y s t a g e s o f t h e d i a g n o s i s and t r e a t m e n t p r o c e s s a t w h i c h d i f f e r e n t i n t e r v e n t i o n s a r e most e f f e c t i v e and t h e r e l a t i v e s u c c e s s o f compre-h e n s i v e i n t e r v e n t i o n p r o g r a m s w h i c h t a k e a d v a n t a g e o f what e d u c a t o r s c a l l t h e t e a c h a b l e moment. 86 BIBLIOGRAPHY A b d e l l a h , F. & L e v i n e , E. ( 1 9 6 5 ) . B e t t e r p a t i e n t c a r e  t h r o u g h n u r s i n g r e s e a r c h . New Y o r k : M a c m i l l a n P u b l i s h i n g Company. Abrams, R. D. ( 1 9 6 6 ) . 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C a n c e r N u r s i n g . 8 ( 3 ) , 151-158. W h i t e , R. ( 1 9 7 6 ) . S t r a t e g i e s o f a d a p t a t i o n : An a t t e m p t a t s y s t e m a t i c d e s c r i p t i o n . I n R. Moos ( E d . ) , Human  a d a p t a t i o n ( p . 2 2 6 ) . L e x i n g t o n , MA: D.C. H e a t h and Company. W i l l i a m s , S. ( 1 9 8 1 ) . T e a c h i n g t h e c a n c e r p a t i e n t and f a m i l y how t o c o p e w i t h t h e d i a g n o s i s and c h e m o t h e r a p y . I n M. Donovan ( E d . ) , C a n c e r c a r e : A  g u i d e f o r p a t i e n t e d u c a t i o n (pp. 123-136). New Y o r k : A p p l e t o n - C e n t u r y - C r o f t s . W i l s o n , H., & K n e i s e l , C. ( 1 9 7 9 ) . P s y c h i a t r i c n u r s i n g . M enlo P a r k , CA: A d d i s o n - W e s l e y P u b l i s h i n g Company. Worden, J . & Weisman, A. ( 1 9 8 0 ) . Do c a n c e r p a t i e n t s r e a l l y want c o u n s e l l i n g ? G e n e r a l H o s p i t a l  P s y c h i a t r y . 2, 100-103. Y a s k o , J . ( 1 9 8 2 ) . C a r e o f t h e p a t i e n t r e c e i v i n g r a d i a t i o n t h e r a p y . N u r s i n g C l i n i c s o f N o r t h A m e r i c a , 1 7 ( 4 ) , 631-648. Y a t e s , J . , C h a l m e r , B., & McKegney, P. ( 1 9 8 0 ) . E v a l u a t i o n o f p a t i e n t s w i t h a d v a n c e d c a n c e r u s i n g t h e K a r n o f s k y P e r f o r m a n c e S t a t u s S c a l e . C a n c e r , 45, 2220-2224. 96 APPENDIX A Demographic Q u e s t i o n n a i r e and B a c k g r o u n d I n f o r m a t i o n 97 D e m o g r a p h i c Q u e s t i o n n a i r e 1. S u b j e c t Code No. 2. Age 3. Sex 4. M a r i t a l S t a t u s 5. E t h n i c Group 6. P h y s i c i a n 7. M e d i c a l D i a g n o s e s o t h e r t h a n c a n c e r 8. M e d i c a t i o n s p a t i e n t i s t a k i n g 9. C a n c e r D i a g n o s i s 10. P u r p o s e o f R a d i o t h e r a p y - C u r a t i v e P a l l i a t i v e 11. A n a t o m i c a l s i t e o f r a d i a t i o n t h e r a p y 12. R a d i a t i o n T h e r a p y d o s a g e 13. R a d i a t i o n t h e r a p y i s : P r i m a r y A d j u n c t i v e t o s u r g e r y 14. D a t e o f I n t e r v i e w 15. P e r f o r m a n c e s t a t u s a t t i m e o f i n t e r v i e w w i t h i n v e s t i g a t o r ( u s e g r a d e ) S c a l e F u l l y a c t i v e , a b l e t o c a r r y on a l l p r e d i s e a s e p e r f o r m a n c e w i t h o u t r e s t r i c t i o n R e s t r i c t e d i n p h y s i c a l l y s t r e n u o u s a c t i v i t y b u t a m b u l a t o r y and a b l e t o c a r r y o u t work o f a l i g h t and s e d e n t a r y n a t u r e , e . g . l i g h t housework o r o f f i c e work a m b u l a t o r y and c a p a b l e o f a l l s e l f - c a r e b u t u n a b l e t o c a r r y o u t any work a c t i v i t i e s . Up and a b o u t more t h a n 50% o f waking h o u r s . C a p a b l e o f o n l y l i m i t e d s e l f c a r e , c o n f i n e d t o bed o r c h a i r more t h a n 50% o f w a k i n g h o u r s C o m p l e t e l y d i s a b l e d . C a n n o t c a r r y on any s e l f c a r e . T o t a l l y c o n f i n e d t o bed o r c h a i r . Dead G r a d e 90-100 70-89 50-69 30-49 10-29 0 98 Code B a c k g r o u n d I n f o r m a t i o n What i s y o u r o c c u p a t i o n ? P l e a s e c i r c l e t h e number below t h a t d e s c r i b e s y o u r e d u c a t i o n a l e x p e r i e n c e . E l e m e n t a r y S c h o o l 1 2 3 4 5 6 7 8 H i g h S c h o o l 9 10 11 12 13 V o c a t i o n a l S c h o o l o r J u n i o r C o l l e g e 1 2 3 4 C o l l e g e 1 2 3 4 G r a d u a t e o r P r o f e s s i o n a l s c h o o l 1 2 3 4 5 Note Items 2 t h r o u g h 4 and 6 t h r o u g h 13 on t h e p r e v i o u s page w i l l be c o m p l e t e d u s i n g t h e p a t i e n t ' s m e d i c a l r e c o r d . Items 5 and 15 w i l l be a s k e d d i r e c t l y o f t h e p a t i e n t . A t no t i m e i s t h e p r e v i o u s page s e e n by t h e S u b j e c t . 99 APPENDIX B H e a l t h C a r e P r e f e r e n c e S u r v e y and C o n c u r r e n t V a l i d i t y Q u e s t i o n 100 H e a l t h C a r e P r e f e r e n c e S u r v e y \ The f o l l o w i n g i t e m s d e s c r i b e s i t u a t i o n s a p e r s o n m i g h t e n c o u n t e r w h i l e r e c e i v i n g h e a l t h c a r e t r e a t m e n t . F o r e a c h s t o r y below, d e c i d e w h i c h one o f t h e two p o s s i b l e r e s p o n s e s would be c l o s e s t t o what you would do i f you were i n t h i s s i t u a t i o n . B e c a u s e t h e s e a r e e n t i r e l y p e r s o n a l p r e f e r e n c e s , t h e r e a r e NO " r i g h t " o r "wrong" a n s w e r s . P l e a s e c i r c l e an answer f o r e a c h q u e s t i o n . E v e n i f you would p r e f e r a n o t h e r s o l u t i o n , p l e a s e c h o o s e t h e r e s p o n s e (A o r B) w h i c h most c l o s e l y r e s e m b l e s what you would c h o o s e y o u r s e l f . Y our a n s w e r s a r e c o m p l e t e l y c o n f i d e n t i a l and w i l l be u s e d f o r r e s e a r c h p u r p o s e s o n l y . Thank you f o r y o u r a s s i s t a n c e . <1> You a r e i n t h e h o s p i t a l and s c h e d u l e d f o r s u r g e r y . The e v e n i n g b e f o r e s u r g e r y you f i n d y o u r s e l f f e e l i n g r e s t l e s s and p a c i n g t h e f l o o r . Which do you t h i n k would be more h e l p f u l t o y o u : A. To have a n u r s e come and r e a s s u r e you? B. To v i e w a s l i d e - t a p e e x p l a i n i n g what t h e day o f s u r g e r y w i l l be l i k e ? <2> W h i l e you a r e s t i l l i n t h e h o s p i t a l y o u r d o c t o r s t o p s by t o t e l l you t h a t t h e r e ' s a new d i a g n o s t i c t e s t t h a t he wants you t o u n d e r g o . He had a r r a n g e d f o r you t o have t h e t e s t done i m m e d i a t e l y . You d o n ' t know what i t w i l l be l i k e e x c e p t t h a t i t i n v o l v e s some new k i n d o f m a c h i n e s and t a k e s a b o u t h a l f a day t o c o m p l e t e . Which o f t h e f o l l o w i n g two c h o i c e s would be most l i k e l y t o make you f e e l more c o m f o r t a b l e a b o u t u n d e r g o i n g t h e t e s t : A. H a v i n g a n u r s e accompany you t o t h e e x a m i n a t i o n when u n d e r g o i n g t h e t e s t , e x p l a i n e x a c t l y what t h e p r o c e d u r e w i l l be l i k e , and t h e n l e a v e . B. H a v i n g a n u r s e s t a y w i t h you and c o m f o r t you d u r i n g t h e w hole p r o c e d u r e ? <3> Your d o c t o r h a s j u s t a d v i s e d you t h a t r a d i a t i o n t h e r a p y i s t h e b e s t f o r m o f t r e a t m e n t . F o r many p e o p l e t h i s i s an u p s e t t i n g t i m e . Which o f t h e s e 2 r e s p o n s e s i s most l i k e what you would do? A. I would want t o t a l k w i t h someone a b o u t what I was f e e l i n g . B. I would want t o f i n d o u t i n f o r m a t i o n a b o u t what t h e t r e a t m e n t s would be l i k e . 101 (4) Your d o c t o r has i n f o r m e d you t h a t y o u r s e r i e s o f r a d i a t i o n t r e a t m e n t s w i l l b e g i n i n two d a y s . You a r e t o r e p o r t t o t h e r a d i a t i o n t h e r a p y d e p a r t m e n t one h o u r e a r l y t o meet w i t h t h e n u r s e . Which n u r s e would you p r e f e r ? A. I would p r e f e r t o meet w i t h N u r s e A t o d i s c u s s my c a r e s , c o n c e r n s o r f e a r s . B. I would p r e f e r t o meet w i t h N u r s e B t o t o u r t h e r a d i a t i o n u n i t and s e e what t h e p r o c e s s i n v o l v e s . (5) You a r e a b o u t t o r e c e i v e y o u r f i r s t t r e a t m e n t . T h e r e a r e two t e c h n i c i a n s on t h e u n i t . You w i l l k e e p t h e same t e c h n i c i a n f o r y o u r e n t i r e c o u r s e o f r a d i a t i o n t h e r a p y . Which t e c h n i c i a n would you p r e f e r t o g i v e y o u r t r e a t m e n t ? A. T e c h n i c i a n A g r e e t s you warmly, e n c o u r a g e s you t o t a l k a b o u t any w o r r i e s you have, a s s u r e s you t h a t h e / s h e w i l l be r i g h t o u t s i d e t h e d o o r , and t h a t h e / s h e c a n t a l k w i t h you t h r o u g h t h e i n t e r c o m s h o u l d you need h i m / h e r . B. T e c h n i c i a n B c a r e f u l l y e x p l a i n s how you w i l l need t o l i e on t h e t a b l e , where t h e machine w i l l be p l a c e d what s o u n d s you w i l l h e a r , and t h a t h e / s h e w i l l answer any q u e s t i o n s you have. <6) You have been w o r r y i n g a l o t l a t e l y . One o f t h e t h i n g s on y o u r mind h a s been t h e s t o r i e s y ou've h e a r d a b o u t t h e s i d e e f f e c t s o f r a d i a t i o n t h e r a p y . The n u r s e c a n h e l p i n s e v e r a l ways. Which do you t h i n k would be more h e l p f u l f o r you? A. The n u r s e c a n g i v e you p a m p h l e t s t h a t e x p l a i n t h e s i d e e f f e c t s o f r a d i a t i o n , and what you c a n do t o m i n i m i z e them. B. The n u r s e c a n t e a c h you a t e c h n i q u e t h a t c a n h e l p you r e l a x when you a r e w o r r i e d . (7) You have s e n s e d t h a t t h e r e i s s o m e t h i n g m i s s i n g i n t h e d i s c u s s i o n s you have had w i t h y o u r f a m i l y a b o u t y o u r t r e a t m e n t s . Would y o u r f a m i l y b e n e f i t more f r o m l e a r n i n g : A. More d e t a i l s a b o u t how t h e t r e a t m e n t s work? B. How t o communicate more o p e n l y ? 102 C o n c u r r e n t V a l i d i t y Q u e s t i o n I n g e n e r a l , i f you were g i v e n a c h o i c e by y o u r d o c t o r o r n u r s e a s t o t h e t y p e o f c a r e you would f i n d most h e l p f u l i n a d d i t i o n t o y o u r m e d i c a l t r e a t m e n t , w h i c h ONE would you c h o o s e ? A. I would want t o g e t more i n f o r m a t i o n a b o u t my i l l n e s s o r my t r e a t m e n t , a b o u t what's h a p p e n i n g t o me and what I s h o u l d e x p e c t t o happen. B. I would want t o have more o p p o r t u n i t y t o t a l k w i t h someone a b o u t how I'm f e e l i n g , e s p e c i a l l y when I g e t b l u e o r s a d o r a n g r y . C. I would want t o know more a b o u t what I c a n do f o r m y s e l f s o t h a t I c a n r e l a x more e a s i l y , and t a k e c a r e o f my mind and body. D. None o f t h e s e . E. S o m e t h i n g d i f f e r e n t : ( p l e a s e e x p l a i n ) 103 APPENDIX C L e t t e r o f I n t r o d u c t i o n 104 L e t t e r o f I n t r o d u c t i o n H e l l o : My name i s C h r i s S a l t o n . I am a r e g i s t e r e d n u r s e and a g r a d u a t e s t u d e n t a t t h e U n i v e r s i t y o f B r i t i s h C o l u m b i a . As p a r t o f my c o u r s e work f o r my M a s t e r ' s t h e s i s , I am c o n d u c t i n g a s t u d y w i t h p a t i e n t s who a r e r e c e i v i n g r a d i o t h e r a p y f o r t h e f i r s t t i m e . Your name has been s e l e c t e d f r o m t h e g r o u p o f p a t i e n t s r e c e i v i n g r a d i o t h e r a p y f o r t h e f i r s t t i m e a t t h e A. Ma x w e l l E v a n s C l i n i c . I would l i k e t o ask you t o p a r t i c i p a t e i n my s t u d y . The p u r p o s e o f t h e s t u d y i s t o l e a r n a b o u t what k i n d o f i n f o r m a t i o n you s e e a s n e c e s s a r y r e g a r d i n g y o u r r a d i o t h e r a p y . Y our p r e f e r e n c e s f o r i n f o r m a t i o n a r e u s e f u l f o r h e a l t h c a r e p r o f e s s i o n a l s s o t h a t , i n f u t u r e , we w i l l be a b l e t o make e x p l a n a t i o n s more m e a n i n g f u l and u s e f u l . I f you a g r e e t o p a r t i c i p a t e i n t h i s s t u d y , I w i l l a sk you t o c o m p l e t e two q u e s t i o n n a i r e s w h i c h w i l l t a k e a b o u t 15 m i n u t e s . I w i l l be a v a i l a b l e t o r e s p o n d t o q u e s t i o n s you may have a f t e r you have c o m p l e t e d t h e q u e s t i o n n a i r e s . Your r e s p o n s e s t o t h e q u e s t i o n n a i r e s w i l l be anonymous and c o n f i d e n t i a l . T h e r e a r e no i d e n t i f y i n g names on t h e q u e s t i o n n a i r e s and t h e i n f o r m a t i o n w i l l be p o o l e d . O n l y my t h e s i s s u p e r v i s o r s w i l l s e e t h e q u e s t i o n n a i r e s t h e m s e l v e s . The r e s u l t s f r o m t h i s s t u d y w i l l o n l y be u s e d f o r s c h o l a r l y p u r p o s e s . 105 Your p a r t i c i p a t i o n i s e n t i r e l y v o l u n t a r y . Your c o n s e n t t o p a r t i c i p a t e o r y o u r r e f u s a l w i l l i n no way a f f e c t y o u r p r e s e n t o r f u t u r e c a r e a t t h i s f a c i l i t y . You may r e f u s e t o r e s p o n d t o any q u e s t i o n and you may w i t h d r a w f r o m p a r t i c i p a t i o n a t any t i m e . T h e r e a r e no known r i s k s o r b e n e f i t s t o you f o r p a r t i c i p a t i n g i n t h i s s t u d y . The i n f o r m a t i o n you p r o v i d e may be v e r y h e l p f u l t o 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 t h e f u t u r e when p l a n n i n g e x p l a n a t i o n s t o p a t i e n t s l i k e y o u r s e l f . I f you d e c i d e t o p a r t i c i p a t e , p l e a s e r e a d t h e a t t a c h e d c o n s e n t l e t t e r w h i c h summarizes t h e i n f o r m a t i o n I have g i v e n y o u . A f t e r you have s i g n e d i t we c a n a r r a n g e a m u t u a l l y c o n v e n i e n t t i m e f o r you and I t o c o m p l e t e t h e q u e s t i o n n a i r e s . Thank you f o r t a k i n g t h e t i m e t o r e a d t h i s l e t t e r and t h a n k you f o r c o n s i d e r i n g t h e p o s s i b i l i t y o f p a r t i c i p a t i n g i n my s t u d y . C h r i s S a l t o n M a s t e r o f S c i e n c e i n N u r s i n g S t u d e n t 106 APPENDIX D P a t i e n t I n f o r m a t i o n S h e e t 107 PATIENT INFORMATION SHEET The i n v e s t i g a t o r ' s s t u d y e x a m i n e s p r e f e r e n c e s f o r i n t e r v e n t i o n s among p a t i e n t s who a r e r e c e i v i n g r a d i o t h e r a p y f o r t h e f i r s t t i m e . I f I a g r e e t o p a r t i c i p a t e t h e f o l l o w i n g w i l l happen: I w i l l meet t h e i n v e s t i g a t o r a t a m u t u a l l y c o n v e n i e n t t i m e and I w i l l c o m p l e t e some q u e s t i o n n a i r e s w h i c h w i l l t a k e a b o u t 15 m i n u t e s e a c h . The i n v e s t i g a t o r w i l l a l s o o b t a i n i n f o r m a t i o n r e g a r d i n g my m e d i c a l h i s t o r y and t r e a t m e n t f r o m my m e d i c a l r e c o r d . A l l i n f o r m a t i o n o b t a i n e d f r o m t h e q u e s t i o n n a i r e s w i l l be k e p t anonymous and c o n f i d e n t i a l . The r e s u l t s w i l l be u s e d f o r s c h o l a r l y p u b l i c a t i o n s and t h e i n v e s t i g a t o r ' s t h e s i s . I u n d e r s t a n d t h a t t h e r e a r e no r i s k s o r b e n e f i t s t o me f r o m p a r t i c i p a t i n g i n t h i s s t u d y . The t i m e I s p e n d c o m p l e t i n g t h e q u e s t i o n n a i r e w i l l n o t i n t e r f e r e w i t h my c l i n i c a p p o i n t m e n t s o r my t r e a t m e n t . I t i s hoped t h a t t h e r e s u l t s f r o m t h e s t u d y w i l l h e l p h e a l t h c a r e p r o f e s s i o n a l s p r o v i d e r e l e v a n t i n f o r m a t i o n t o f u t u r e c a n c e r p a t i e n t s who w i l l r e c e i v e r a d i o t h e r a p y . I u n d e r s t a n d t h a t my p a r t i c i p a t i o n i s v o l u n t a r y . I may wi t h d r a w a t any t i m e and t h i s w i l l n o t a f f e c t my p r e s e n t o r f u t u r e c a r e a t t h e A. Ma x w e l l E v a n s C l i n i c . I have d i s c u s s e d t h i s s t u d y w i t h t h e i n v e s t i g a t o r and my q u e s t i o n s have been answered. I may c o n t a c t Ms. S a l t o n a t i f I have f u r t h e r q u e s t i o n s . 108 

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