Open Collections

UBC Theses and Dissertations

UBC Theses Logo

UBC Theses and Dissertations

Socioeconomic concerns, family roles and relationships of the breast cancer patient Jessup, Margot Anne 1978

Your browser doesn't seem to have a PDF viewer, please download the PDF to view this item.

Notice for Google Chrome users:
If you are having trouble viewing or searching the PDF with Google Chrome, please download it here instead.

Item Metadata

Download

Media
831-UBC_1978_A5 J48.pdf [ 5.62MB ]
Metadata
JSON: 831-1.0094254.json
JSON-LD: 831-1.0094254-ld.json
RDF/XML (Pretty): 831-1.0094254-rdf.xml
RDF/JSON: 831-1.0094254-rdf.json
Turtle: 831-1.0094254-turtle.txt
N-Triples: 831-1.0094254-rdf-ntriples.txt
Original Record: 831-1.0094254-source.json
Full Text
831-1.0094254-fulltext.txt
Citation
831-1.0094254.ris

Full Text

SOCIOECONOMIC CONCERNS, FAMILY ROLES AND RELATIONSHIPS OF THE BREAST CANCER PATIENT by MARGOT ANNE JESSUP B. MUS., U n i v e r s i t y of B r i t i s h Columbia, 1974 B.S.W., U n i v e r s i t y of B r i t i s h Columbia, 1974 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SOCIAL WORK i n THE FACULTY OF GRADUATE STUDIES (School of Social Work) We accept t h i s t h e s i s as conforming to the r e q u i r e d standard THE UNIVERSITY OF BRITISH COLUMBIA August, 197 8 (2) Margot Anne Jessup, 1978 In p r e s e n t i n g t h i s t h e s i s in p a r t i a l f u l f i l m e n t o f the r e q u i r e m e n t s f o r an advanced degree at 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 , I a g r e e that the L i b r a r y s h a l l make i t f r e e l y a v a i l a b l e f o r r e f e r e n c e and s t u d y . I f u r t h e r a g r e e t h a t p e r m i s s i o n f o r e x t e n s i v e c o p y i n g o f t h i s t h e s i s f o r s c h o l a r l y p u r p o s e s may be g r a n t e d by the Head o f my Department o r by h i s r e p r e s e n t a t i v e s . It i s u n d e r s t o o d tha t c o p y i n g o r p u b l i c a t i o n o f t h i s t h e s i s f o r f i n a n c i a l g a i n s h a l l not be a l l o w e d w i t h o u t my w r i t t e n p e r m i s s i o n . Department o f The U n i v e r s i t y o f B r i t i s h Co lumbia 2075 Wesbrook Place Vancouver, Canada V6T 1W5 Date / \ L A C \ iA--^ ABSTRACT The purpose of t h i s study was to e x p l o r e the socioeconomic needs and concerns of a group o f new b r e a s t cancer p a t i e n t s and t h e i r f a m i l i e s w i t h c o n s i d e r a t i o n of changes i n r o l e s and r e l a t i o n s h i p s and p a t i e n t ' s f e e l i n g s about s e l f . The study was conducted i n c o - o p e r a t i o n w i t h the A. Maxwell Evans C l i n i c , a cancer treatment c e n t r e under the d i r e c t i o n o f the Cancer C o n t r o l Agency o f B r i t i s h Columbia. The scope of t h i s study was r e s t r i c t e d to new b r e a s t cancer p a t i e n t s r e f e r r e d to the New P a t i e n t s C l i n i c i n May, 1978 and t h e i r primary c a r e - g i v e r s . In t h i s study, the primary c a r e - g i v e r s were f a m i l y members most r e s p o n s i b l e f o r the p a t i e n t ' s r e h a b i l i t a t i o n . The sample c o n s i s t e d of 16 p a t i e n t s and 14 primary c a r e - g i v e r s . Two of the p a t i e n t s ' primary c a r e - g i v e r s were not a v a i l a b l e a t the time of the i n t e r v i e w . The sample i n c l u d e d p a t i e n t s w i t h b r e a s t cancer i n Stages 1, 2, 3 and 4. One i n t e r v i e w schedule was designed f o r the p a t i e n t and a s h o r t e r form f o r the primary c a r e - g i v e r . An open-ended qu e s t i o n about the p a t i e n t s and primary c a r e - g i v e r s ' g r e a t e s t concerns were i n c l u d e d to i d e n t i f y needs not covered by scheduled t o p i c s and to g i v e respondents an o p p o r t u n i t y to expand and p r i o r i z e concerns. Socioeconomic change was d e f i n e d i n terms of changes i n p l a c e of r e s i d e n c e , work a c t i v i t i e s o u t s i d e the home, f a m i l y r o l e s and r e s p o n s i b i l i t i e s , r e l a t i o n s h i p s w i t h f a m i l y and f r i e n d s , a n d f e e l i n g s about s e l f . The f i n d i n g s i n d i c a t e d t h a t the area of g r e a t e s t change was i n f a m i l y r o l e s and r e l a t i o n s h i p s . Most primary c a r e - g i v e r s were i n t e r e s t e d i n t a l k i n g to the i n t e r v i e w e r about some a n x i e t i e s concerning t h e i r new r o l e as primary c a r e - g i v e r . Some primary c a r e - g i v e r s a l s o were i n t e r e s t e d i n more informa-t i o n about how to c r e a t e a r e h a b i l i t a t i v e environment f o r the p a t i e n t . A l l p a t i e n t s were g e n e r a l l y p o s i t i v e toward the C l i n i c . S e v e r a l p a t i e n t s expressed a number of suggestions f o r improving support s e r v i c e s and o f f e r e d ideas about . the a t t i t u d e s of s i g n i f i c a n t o t hers which a f f e c t the p a t i e n t ' s sense of w e l l -being and a b i l i t y t o r e c o v e r . The r e s e a r c h e r makes some recommendations f o r enhancing and d e v e l o p i n g s u p p o r t i v e s e r v i c e s f o r the c o n s i d e r a t i o n of the medical team and the s p e c i a l i z e d s o c i a l s e r v i c e s department i n a cancer c l i n i c . The recommendations i n c l u d e approaches to help f a m i l i e s r e c o g n i z e and develop new r o l e s to help the p a t i e n t r e c o v e r . i v TABLE OF CONTENTS Page TITLE PAGE i ABSTRACT i i TABLE OF CONTENTS i v LIST OF TABLES v i i ACKNOWLEDGEMENTS v i i i INTRODUCTORY QUOTE i x Chapter I INTRODUCTION . . 1 Chapter I I REVIEW OF THE LITERATURE 3 Chapter I I I THE PROBLEM FORMULATION 20 1. The R a t i o n a l e f o r t h i s Study 20 2. The S o c i a l Work Problem i n Need of Research . . . . 21 3. The Purpose of the Study 22 4. The Research Problem . 23 5. Working D e f i n i t i o n s 24 6. Value Assumptions 25 7. Independent V a r i a b l e s Which May A f f e c t P e r c e p t i o n s o f Socioeconomic Change and Concerns 26 P a t i e n t C h a r a c t e r i s t i c s ; Family C h a r a c t e r i s t i c s ; D i a g n o s i s and Treatment P l a n ; S e r v i c e s Received P r i o r to Interview; Time Interviewed 26 8. Persons Concerned With T h i s Study 28 Chapter IV DATA COLLECTION AND DESIGN 31 1. Design C o n s i d e r a t i o n s 31 2. Sampling C o n s i d e r a t i o n s and Design 32 3. C o n f i d e n t i a l i t y 36 Instrument Devised f o r t h i s Study . . . Major Source of Data A d m i n i s t r a t i o n of the Inte r v i e w Schedule: The P r e - t e s t I n t e r v i e w i n g Procedure Data A n a l y s i s Design r V STUDY FINDINGS I n t r o d u c t i o n - Problems i n Sampling and Data C o l l e c t i o n . . Impressions About I n t e r v i e w i n g Cancer P a t i e n t s and T h e i r F a m i l i e s The I n t e r v i e w Schedule - I n t r o d u c t i o n . D e s c r i p t i v e Data . . Dia g n o s i s Treatment and Pr e v i o u s Experience with I l l n e s s P lace of Residence Work A c t i v i t i e s o u t s i d e the Home and T r a n s p o r t a t i o n . Changes i n Family R e s p o n s i b i l i t i e s and Roles . Changes i n R e l a t i o n s h i p s w i t h Family and F r i e n d s Changes i n S e l f Degree o f Concern and Amount of Change Other F i n d i n g s Independent V a r i a b l e s Which Seemed to I n f l u e n c e P e r c e p t i o n s of Socioeconomic Change and Concerns v i Page Chapter VI SUMMARY CONCLUSIONS AND RECOMMENDATIONS . . . 98 1. Summary 9 8 2. S u i t a b i l i t y of the Instrument . . . 100 3. Conclus i o n s 102 4. Recommendations 103 FOOTNOTES 106 BIBLIOGRAPHY 1 1 2 APPENDIX A 114 APPENDIX B 115 APPENDIX C 116 APPENDIX D 117 APPENDIX E 118 LIST OF TABLES v i i Page Table I STAGE OF CANCER OF PATIENTS INTERVIEWED 4 3 Table I I FAMILY ROLES AND RESPONSIBILITIES BEFORE DIAGNOSIS 6 9 Table I I I FAMILY ROLES AND RESPONSIBILITIES AFTER DIAGNOSIS 7 0 ACKNOWLEDGEMENT S v i i i The author wishes t o thank Dr. B a l l a n t y n e , D i r e c t o r of the New P a t i e n t s C l i n i c , (a p a r t o f the Out P a t i e n t s Department) and Mrs. Betty-Jane N o r r i s , D i r e c t o r of the S o c i a l S e r v i c e s Department at the A. Maxwell Evans C l i n i c , f o r t h e i r i n v a l u a b l e help i n suppo r t i n g t h i s p r o j e c t at the C l i n i c . S p e c i a l thanks a l s o goes t o Dr. John Crane and Mrs. E l a i n e S t o l a r a t the School of S o c i a l Work, U.B.C. f o r h e l p i n g i n the desi g n and data a n a l y s i s . A s p e c i a l t r i b u t e goes t o the l a t e Dr. Joe Lagey who through h i s own i l l n e s s w i t h cancer p e r c e i v e d the importance of f a m i l y members support and d i s c u s s e d t h i s concept w i t h the r e s e a r c h e r . "I t h i n k I'm used to her mastectomy a l r e a d y , but maybe I ' l l wake up i n the middle of the n i g h t and wonder what has happened to us. Is t h i s the beginning of the end?" " T a l k i n g Together", American J o u r n a l o f  Nursing . 72 ( A p r i l 1972):682. 1 C h a p t e r 1 SOCIOECONOMIC CONCERNS AND THE  BREAST CANCER PATIENT I n t r o d u c t i o n " B r e a s t c a n c e r , t h e l e a d i n g c a u s e o f d e a t h f o r women b e t w e e n t h e a g e s o f 39 and 4 4 , i s s t i l l a m y s t e r y f o r t h e m e d i c a l p r o f e s s i o n " , s a i d a C a n a d i a n M e d i c a l A s s o c i a t i o n s p okesman a t t h e 1978 c a n c e r c o n f e r e n c e i n W i n n i p e g , M a n i t o b a . B r e a s t c a n c e r a f f e c t s a p p r o x i m a t e l y 7 o u t o f e v e r y 100 women i n C a n a d a a c c o r d i n g t o 1975 u n p u b l i s h e d f i g u r e s r e c e i v e d f r o m t h e B.C. C a n c e r R e g i s t r y . H owever, t h e c a u s e o f b r e a s t c a n c e r r e m a i n s unknown and s u r g e o n s d i f f e r on t r e a t m e n t m e t h o d s . S u r g e r y , e i t h e r b y t h e r a d i c a l m a s t e c t o m y , t h e m o d i f i e d r a d i c a l o r t h e s i m p l e m a s t e c t o m y , i s s t i l l c o n s i d e r e d t h e b e s t m ethod o f t r e a t m e n t . T h e r e f o r e , d e s i g n i n g r e h a b i l i t a t i o n and s u p p o r t p r o g r a m s t o meet t h e t o t a l n e e d s o f p r e - s u r g i c a l and p o s t s u r g i c a l b r e a s t c a n c e r p a t i e n t s r e m a i n s a c u r r e n t i s s u e . The i m p a c t o f a b r e a s t c a n c e r d i a g n o s i s and s u b s e q u e n t m a s t e c t o m y i s now r e c o g n i z e d i n t h e l i t e r a t u r e and by t h e p r o f e s s i o n a l t e am a t t h e A. M a x w e l l E v a n s C l i n i c as an e m o t i o n a l u p h e a v a l i n t h e t o t a l l i f e s i t u a t i o n o f t h e p a t i e n t and h e r f a m i l y . The p s y c h o l o g i c a l i m p a c t o f m a s t e c t o m y may h a v e t r a u m a t i c e f f e c t s upon a f e w o r a l l f a c e t s i n t h e p a t i e n t ' s l i f e . The f o l l o w i n g 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 i s 2 designed to look a t changes which the p a t i e n t and her f a m i l y have p r e c e i v e d i n the socioeconomic s i t u a t i o n of t h e i r l i f e s i n c e the d i a g n o s i s of b r e a s t cancer. T h i s study w i l l i n v o l v e an i n v e s t i g a t i o n of the p a t i e n t s ' and f a m i l i e s ' p e r c e p t i o n o f socioeconomic changes, r o l e s and r e l a t i o n s h i p s as w e l l as changes i n s e l f . T h i s focus w i l l aim to p i n p o i n t some of the needs of p a t i e n t s and f a m i l i e s which a r i s e from socioeconomic change. I t i s hoped t h a t s i n g l i n g out socioeconomic changes and concerns as the major focus of t h i s i n v e s t i g a t i o n w i l l have d i r e c t p r a c t i c a l v a l u e to the A. Maxwell Evans C l i n i c i n a s s e s s i n g present support s e r v i c e s and p l a n n i n g and implementing f u r t h e r support s e r v i c e s to b r e a s t cancer p a t i e n t s and t h e i r f a m i l i e s . 3 Chapter II LITERATURE REVIEW I n t r o d u c t i o n There i s a growing i n t e r e s t i n the medical l i t e r a t u r e on the emotional impact of b r e a s t cancer and mastectomy upon the p a t i e n t and her f a m i l y . U n t i l r e c e n t l y , the medical l i t e r a t u r e has d e a l t with e a r l y d e t e c t i o n , s c r e e n i n g programs, and c o n t r o v e r s i e s over s u r g i c a l treatment and r e h a b i l i t a t i o n t h e r a p i e s . The p s y c h i a t r i c and psychosomatic l i t e r a t u r e c o n t a i n e d s t u d i e s which d e s c r i b e the p e r s o n a l i t y and psychodynamics of the b r e a s t cancer p a t i e n t , or searched f o r p r e d i s p o s i n g s t r e s s f u l l i f e events. The c u r r e n t emphasis has now been p l a c e d on the p s y c h o s o c i a l aspects of b r e a s t cancer and mastectomy and on d e f i n i n g the s e r v i c e s and p r o f e s s i o n a l r o l e s r e q u i r e d to meet p a t i e n t s ' needs. There i s s t i l l very l i t t l e w r i t t e n on the impact of b r e a s t cancer upon the f a m i l y and s i g n i f i c a n t o t h e r s . The purpose of t h i s chapter i s to review the medical l i t e r a t u r e p e r t a i n i n g to the p s y c h o s o c i a l experience of women wit h b r e a s t cancer and t h e i r f a m i l i e s and to look at c u r r e n t approaches t o i n t e r v e n t i o n . 3a I P r e d i s p o s i n g S t r e s s F a c t o r s There have been some qu e s t i o n s r a i s e d about the i n f l u e n c e of s o c i a l s t r e s s and p e r s o n a l i t y i n the e t i o l o g y of b r e a s t cancer. K a t h e r i n e H u r l b u r t conducted a d e s c r i p t i v e study e x p l o r i n g the r e l a t i o n s h i p between l i f e change events u s i n g the SRE s c a l e of s t r e s s f u l r e c e n t events and the d i a g n o s i s of b r e a s t cancer i n 84 women r e c e n t l y r e f e r r e d t o a cancer c l i n i c . Although no c a u s a l r e l a t i o n s h i p was found, H u r l b u r t proposed " t h a t i f p h y s i c i a n s g e n e r a l l y r e c o g n i z e d and understood these l i f e change events i n women's l i v e s as being s i g n i f i c a n t i n terms of adaptive energy t h a t i s r e q u i r e d to cope wi t h them, t h e i r i n t e r v e n t i o n or r e f e r r a l f o r c o u n s e l l i n g might v e r y w e l l have important i m p l i c a t i o n s f o r p r e v e n t i v e h e a l t h f o r women."''" S n e l l and Graham conducted a study with 352 women and 670 c o n t r o l s w i t h other d i s e a s e s of the g e n i t a l i a t o i n v e s t i g a t e t r a u m a t i c i n c i d e n t s , e.g. deaths, s e p a r a t i o n s , d i v o r c e , unemployment and i l l n e s s d u r i n g 2 the 5 years p r i o r to the b r e a s t cancer d i a g n o s i s . T h i s r e s e a r c h f a i l e d a l s o to f i n d a c a u s a l r e l a t i o n s h i p between s o c i a l s t r e s s o r s and b r e a s t cancer. D i a g n o s i s A. Delay Hackett conducted a study with 2 78 p a t i e n t s coming 4 to a h o s p i t a l f o r d i a g n o s i s and found t h a t the more advanced the e d u c a t i o n a l background, the sooner the p a t i e n t came f o r d i a g n o s i s . Some s p e c u l a t i o n now concerns whether cancer education programs a c t u a l l y reach the person w i t h l i t t l e e d u c a t i o n a l background. F i s h e r e x p l o r e d the r e l a t i o n s h i p between the degree o f d e l a y i n c o n s u l t i n g a p h y s i c i a n and t h e i r p e r c e p t i o n of "boundary d e f i n i t e n e s s . " Twenty-eight women with b r e a s t cancer and 34 w i t h c e r v i c a l cancer were s t u d i e d u s i n g i n k b l o t t e s t s and p e r s o n a l i n t e r v i e w s . F i s h e r found t h a t i n both samples the women who were most independent and s e l f - a c t u a l i z e d were l i k e l y to delay l o n g e s t i n seeking m edical a d v i c e . The problem of persuading people to seek e a r l y medical c o n s u l t a t i o n was co n s i d e r e d to be more complex than p r o v i d i n g e d u c a t i o n a l r e s o u r c e s . B. What To T e l l The P a t i e n t The i s s u e o f how to t e l l the p a t i e n t i s of gr e a t concern to p h y s i c i a n s and surgeons h e l p i n g b r e a s t cancer p a t i e n t s . Bard and Suthe r l a n d wrote "the p h y s i c i a n should be prepared to spend c o n s i d e r a b l e time with the p a t i e n t i n t e r -p r e t i n g the need f o r surgery.... I t cannot be emphasized too s t r o n g l y t h a t an hour of pe r m i s s i v e d i s c u s s i o n when the d i a g n o s i s i s e s t a b l i s h e d may be more advantageous i n the management of the post mastectomy p a t i e n t than months of psychotherapy d u r i n g and a f t e r convalescence.... A course must always be s t a r t e d between t e r r i f y i n g obscurantism and 5 e q u a l l y t e r r i f y i n g a n d u n a b s o r b a b l e i n f o r m a t i o n . " ^ T h e s e a u t h o r s f e e l t h a t a p p r o a c h i n g t h e p a t i e n t t o a c c e p t more i n f o r m a t i o n t h a n he w a n t s t o h e a r c a n l e a d t o g r e a t p r o b l e m s i n t h e p a t i e n t ' s c o p i n g a b i l i t y . H o w e v e r , P i n s c h k e f o u n d t h a t n u r s i n g i n t e r v e n t i o n was most e f f e c t i v e i n an e n v i r o n m e n t o f o p e n n e s s and h o n e s t s h a r i n g 7 a b o u t d i a g n o s e s and p r o g n o s e s w i t h c a n c e r p a t i e n t s . M a m m a r i l f e l t t h a t a n u r s e ' s w i l l i n g n e s s t o l i s t e n w i l l p r o m o t e t h e p a t i e n t ' s c o n f i d e n c e p r i o r t o s u r g e r y . ^ The d i a g n o s i s o f c a n c e r i s o f t e n r e c e i v e d w i t h s h o c k . F r a n c i s f e l t t h a t t h e p a t i e n t ' s c o p i n g r e s o u r c e s and s k i l l s p r i o r t o d i a g n o s i s p l u s a d e q u a t e s u p p o r t s y s t e m s w i l l d e t e r m i n e h e r a b i l i t y t o a d j u s t t o t h e s h o c k o f d i a g n o s i s o f t e n f o l l o w e d 9 by d e n i a l , a n x i e t y , r e g r e s s i o n a n d / o r d e p r e s s i o n . I l l The H o s p i t a l E x p e r i e n c e V o l i c e r s t u d i e d a g r o u p o f p a t i e n t s who w e r e a s k e d t o r a n k i n o r d e r o f d e g r e e o f i m p a c t , t h e i r p e r c e p t i o n s o f s t r e s s f u l e v e n t s i n t h e h o s p i t a l e x p e r i e n c e . " * " ^ R e s p o n d e n t s named a d m i s s i o n f o r a l i f e t h r e a t e n i n g d i s e a s e as t h e s e c o n d m o s t s t r e s s f u l e v e n t , a d m i s s i o n f o r p o s s i b l e l o s s o f an o r g a n as t h i r d , a n d t h e p o s s i b i l i t y o f d i s f i g u r e m e n t a s t h e s i x t h m o s t s t r e s s f u l e v e n t t h a t c o u l d o c c u r w i t h h o s p i t a l i z a t i o n . The i m p l i c a t i o n o f t h e s e f i n d i n g s i s t h a t h o s p i t a l i z a t i o n f o r p o s s i b l e m a s t e c t o m y c a n be v e r y s t r e s s f u l on t h r e e c o u n t s f o r some p a t i e n t s . 6 IV Emotional Reactions t o Mastectomy Bard and Suthe r l a n d s t u d i e d 20 women between the ages o f 28 and 68 who were i n t e r v i e w e d b e f o r e and a f t e r surgery, and found the response f o l l o w e d three d e f i n i t e stages r e l a t i n g to the time b e f o r e , d u r i n g or a f t e r the o p e r a t i o n . In the f i r s t a n t i c i p a t o r y stage, a l l p a t i e n t s r e p o r t e d f e e l i n g "shocked" or "panicky". One p a t i e n t s a i d : "I f e e l scared I know i t has to be done, but I'm a f r a i d of the o r d e a l , the o p e r a t i o n . My hands are shaking j u s t t a l k i n g about i t . I'm scared but I can't say why. For other women, body a t t r a c t i v e n e s s has been the b a s i s of t h e i r f e e l i n g s of s e l f - w o r t h and a t t r a c t i v e n e s s . Another p a t i e n t s a i d : " I f they have to take my b r e a s t o f f , I would f e e l as though I were l o s i n g p a r t of myself, t h a t I'd be d i s f i g u r e d . I'm not a f r a i d of the o p e r a t i o n . I'm more a f r a i d of l o s i n g t h a t p a r t of myself. I know t h i s has to be taken 12 care of but I'd r a t h e r d i e than to have them take i t o f f . " These women o f t e n have p a i n f u l f a n t a s i e s of themselves as d i s f i g u r e d persons i n the community. Another p a t i e n t expressed a f e a r of l o s i n g a b r e a s t as a t h r e a t to her r e l a t i o n s h i p w i t h her husband: "I f e e l i t ' s d i s g u s t i n g i n a sense. I t seems l i k e you are s e x l e s s . That's why I worry about h i s (husband's) r e a c t i o n . I f e e l i t would be one of 13 d i s g u s t , t h a t he has t o s l e e p w i t h a s e x l e s s woman." During the second " o p e r a t i v e phase" the p a t i e n t may p r o j e c t some of her f e a r and h o s t i l i t y toward h o s p i t a l s t a f f . H e r v i e w o f d i s c h a r g e may b e s e e n w i t h a n x i e t i e s a b o u t n o t b e i n g r e a d y t o f a c e o t h e r s , p a r t i c u l a r l y h e r f a m i l y . D u r i n g t h e t h i r d " c o n v a l e s c e n t s t a g e " some p a t i e n t s f e e l d e p r e s s e d 14 and v u l n e r a b l e t o a n t i c i p a t e d e m b a r r a s s m e n t s . R o b e r t s e t a l r e p o r t t h a t 5 1 % o f t h e i r s a m p l e o f m a s t e c t o m y p a t i e n t s s a i d 15 t h e y w e r e a n x i o u s o r d e p r e s s e d . E r v i n , H e a l e y , Synderman a n d A k e h u r s t s a y t h e p r e d o m i n a n t e m o t i o n a l r e a c t i o n s t o m a s t e c t o m y a r e a s e n s e o f l o s s o f f e m i n i n i t y a n d d i s f i g u r e m e n t . ' ' ' K l e i n and G o l d s m i t h m e n t i o n many f e a r s a s s o c i a t e d w i t h m a s t e c t o m y : f e a r o f m a j o r s u r g e r y , f e a r s a b o u t h a v i n g c a n c e r a n d f e a r s o f c h a n g e s i n i n t e r p e r s o n a l m a r i t a l and s e x u a l 20 21 r e l a t i o n s h i p s . ' F e a r o f d e a t h i s a l s o p r e s e n t b u t x s 22 u s u a l l y e x p r e s s e d c o v e r t l y x n t e r m s o f l o s s o f b r e a s t . V D e n i a l P e c k s t u d i e d d e n i a l i n c a n c e r p a t i e n t s who know t h e i r 23 d i a g n o s i s . T h e i r r e s p o n s e s i n c l u d e d x s p l a c e m e n t o f c o n c e r n s , hope g i v i n g s p e c i a l p o w e r s t o t h e p h y s i c i a n , a n d a n g e r . P e c k s e e s d e n i a l o f d e a t h a s an a d a p t i v e r e s p o n s e t o b r e a s t c a n c e r . P o l i v y m e n t i o n s a g r e a t d e a l o f d e n i a l was f o u n d i n b r e a s t 24 c a n c e r p a t i e n t s d i r e c t l y a f t e r s u r g e r y . A f t e r a f e w months o f r e a l i t y , t e s t i n g t h e d e n i a l d e f e n s e was f o u n d t o be no l o n g e r n e c e s s a r y . V I Age a n d F e e l i n g s o f L o s s K l e i n f e e l s t h a t age i s a f a c t o r i n a p a t i e n t ' s 25 i n t e r p r e t a t i o n o f i l l n e s s e s . The y o u n g p a t i e n t i s f o r c e d t o 8 c o n f r o n t her own m o r t a l i t y while the o l d e r p a t i e n t i s f o r c e d to accept the consequences of o l d age. Renneker says t h a t women a t the c l i m a c t e r i c and women a t c h i l d b e a r i n g age seem to s u f f e r l o s s e s of f e m i n i n i t y the most whereas post-menopausal 2 6 women seem to s u f f e r l e a s t . However, Schoenberg' s s t u d y o f l o s s o f e x t e r n a l organs found t h a t the g r e a t e r a woman's emotional investment i n her b r e a s t s the more l i k e l y she was 27 to s u f f e r l o s s and d e p r e s s i o n , r e g a r d l e s s of age. VII Lymphedema ( F l u i d r e t e n t i o n i n arm which may r e s u l t from mastectomy o p e r a t i o n s i n v o l v i n g the lymph nodes) Lymphedema was s t u d i e d by Healey who found p s y c h o s o c i a l f e a r s concerning s e l f - c o n s c i o u s n e s s of the enlarged arm, changes i n l i f e s t y l e , i . e . dancing, p l a y i n g games, and d i f f i c u l t y i n 2 8 f i n d i n g comfortable c l o t h e s . V I I I Phantom B r e a s t Sensations Weinstein who s t u d i e d 20 3 women who had mastectomies 29 found o n e - t h i r d of them experienced a b r e a s t phantom s e n s a t i o n . He found t h a t the longer the cancer had e x i s t e d , the longer the sen s a t i o n s l a s t e d . P a t i e n t s w i t h l e f t mastectomies seemed to experience s e n s a t i o n s e a r l i e r than r i g h t mastectomies. John J a r v i s ' review of the l i t e r a t u r e on the b r e a s t phantom phenomenon found age a t time of mastectomy, mastectomy i n r e l a t i o n to menopause, lymphedema, and post-mastectomy d e p r e s s i o n to be the f o u r s t a t i s t i c a l l y s i g n i f i c a n t f i n d i n g s t h a t d i s t i n g u i s h the phantom b r e a s t group from other mastectomy 4 . - 4. 30 p a t i e n t s . 9 IX Ambivalence Toward the Remaining B r e a s t L e i s r e p o r t s the woman's ambivalent f e e l i n g s toward 31 her remaining b r e a s t . On one hand the b r e a s t i s a remaining s i g n of f e m i n i n i t y and sexual symbol but on the other hand, the b r e a s t may be a source of r e c u r r e n t cancer and c r e a t e s a problem by unbalancing body symmetry. X Unanswered Questions Market notes t h a t the b r e a s t cancer p a t i e n t o f t e n has many qu e s t i o n s which she does not f e e l are a p p r o p r i a t e to ask 32 her d o c t o r s . Questions such as how to wear a bra and what ba t h i n g s u i t s are a v a i l a b l e are o f t e n l e f t unanswered and c r e a t e c o n s i d e r a b l e a n x i e t y f o r the p a t i e n t . K l e i n r e p o r t s t h a t the common misconceptions which p a t i e n t s never q u e s t i o n i n c l u d e the b e l i e f t h a t cancer always r e c u r s o r k i l l s , t h a t the p a t i e n t i s i n some way r e s p o n s i b l e f o r her cancer and t h a t she w i l l be 33 p e r c e i v e d by o t h e r s as d i s e a s e d . XI Depression E r v i n r e p o r t s h i s p e r s o n a l experience as a surgeon 34 working wi t h mastectomy p a t i e n t s . Ten years ago he l o s t 3 b r e a s t cancer p a t i e n t s by s u i c i d e w i t h i n a few months. He d i s c o v e r e d t h a t woman's recovery "from the c r i s i s of mastectomy depends a g r e a t d e a l on the husband's support." He now advocates constant involvement o f the husband throughout d i a g n o s i s , treatment and r e h a b i l i t a t i o n even to the p o i n t of i n s i s t i n g the husband change her bandages. Sutherland and Orbach found 10 the d e p r e s s i o n surrounding surgery f o r cancer to be centred 35 on the p a t i e n t ' s i n t e r p r e t a t i o n of the v a l u e of the organ. Fear o f s o c i a l u n a c c e p t a b i l i t y and f u t u r e l i m i t a t i o n s i n l i f e a c t i v i t i e s are o f t e n more a source of d e p r e s s i o n than r e c u r r e n t d i s e a s e . P a t i e n t s who have many unanswered ques t i o n s about treatment and a f t e r e f f e c t s of surgery, experience more of a n x i e t y than d e p r e s s i o n . These authors a l s o d i s c u s s p o s t -s u r g i c a l dreams which are o f t e n f i l l e d w i t h b i z a r r e h o r r o r scenes. XII Self-Esteem Long s t u d i e d 26 women between the ages of 20-60 years to e x p l o r e the e f f e c t o f a n t i c i p a t e d and a c t u a l l o s s of a 3 6 b r e a s t on l e v e l o f s e l f - e s t e e m . The study concluded t h a t a c t u a l l o s s o f b r e a s t had a s i g n i f i c a n t e f f e c t on s e l f - e s t e e m l e v e l s measured by the Tennessee S e l f - C o n c e p t s c a l e . S u b j e c t s w i t h h i g h s e l f - e s t e e m were l e s s a f f e c t e d by e i t h e r a n t i c i p a t e d or a c t u a l b r e a s t l o s s than s u b j e c t s w i t h low s e l f - e s t e e m . P o l i v y attempted t o measure changes i n body image, s e l f - c o n c e p t and t o t a l s elf-image i n 15 mastectomy p a t i e n t s and two c o n t r o l 37 groups (18 biopsy and 11 s u r g i c a l c o n t r o l s ) . The f i n d i n g s i n d i c a t e t h a t mastectomy p a t i e n t s d i d show a d e c l i n e i n body image and t o t a l s e l f - i m a g e , but not u n t i l months a f t e r surgery. These f i n d i n g s concur w i t h Weisman who found s t r e s s was h i g h e s t 38 i n p a t i e n t s two months f o l l o w i n g the mastectomy. 11 X I I I E f f e c t s on M a r i t a l a n d S e x u a l R e l a t i o n s h i p s J a m i s o n , W e l l i s c h and P a s n a u c o n d u c t e d two s y s t e m a t i c s t u d i e s , one w i t h a s a m p l e o f 41 women t o i n v e s t i g a t e e f f e c t s o f m a s t e c t o m y o n s e x u a l r e l a t i o n s h i p s and t h e i n f l u e n c e o f age and a n o t h e r w i t h a s a m p l e o f t h e i r m a l e p a r t n e r s (30 w e r e m a r r i e d a n d 1 was l i v i n g common-law) t o i n v e s t i g a t e t h e i r 39 40 a d j u s t m e n t t o t h e m a s t e c t o m y . ' The f i n d i n g s o f t h e women's q u e s t i o n n a i r e i n d i c a t e t h a t a l t h o u g h m o s t women w e r e a d j u s t i n g t o t h e i r s i t u a t i o n t h e r e was some e m o t i o n a l s u f f e r i n g w i t h " s u i c i d a l i d e a t i o n a n d i n c r e a s e d u s e o f a l c o h o l and t r a n q u i l i z e r s . . . age s u p p o r t s y s t e m s and p r e m o r b i d f u n c t i o n i n g may be i n d i c a t o r s o f t h e amount and t y p e o f i n t e r v e n t i o n 41 n e e d e d . " C o u n s e l l i n g i s p a r t i c u l a r l y i m p o r t a n t b e f o r e s u r g e r y s i n c e t h i s t i m e was v i e w e d b y m o s t women as t h e p e r i o d 42 o f g r e a t e s t a n x i e t y . The f i n d i n g s o f t h e men's q u e s t i o n n a i r e i n d i c a t e d t h a t a g a i n m o s t men w e r e a d j u s t i n g t o t h e i r s i t u a t i o n , a l t h o u g h a fe w r e p o r t e d p r o b l e m s i n t h e i r r e l a t i o n s h i p s w i t h t h e i r w i v e s . The a u t h o r s c i t e " f o u r n o d a l p o i n t s " i n i d e n t i f y i n g "good a d j u s t m e n t " i n t h e h u s b a n d : " i n v o l v e m e n t o f p a r t n e r s i n t h e d e c i s i o n m a k i n g p r o c e s s , t h e f r e q u e n c y o f h o s p i t a l v i s i t s , r e s u m p t i o n o f t h e s e x u a l r e l a t i o n s h i p and t h e h u s b a n d ' s 43 l o o k i n g a t h i s p a r t n e r ' s b o d y a f t e r s u r g e r y . " 44 Woods e x p l o r e d s e x u a l a d j u s t m e n t t o m a s t e c t o m y . She f o u n d t h a t t h e p a t i e n t ' s p e r c e p t i o n o f h e r p o s t - o p e r a t i v e s e x u a l a d e q u a c y a nd d e s i r a b i l i t y d e p e n d e d on p a i n n e a r t h e 12 surgery, p e r c e p t i o n of p a r t n e r s r e a c t i o n , and p a t i e n t ' s p e r c e p t i o n of s o c i e t y ' s standards of sexual d e s i r a b i l i t y . G r a n d s t a f f s t u d i e d 70 mastectomy p a t i e n t s and t h e i r f a m i l i e s 45 i n a r e s e a r c h p r o j e c t i n v o l v i n g f a m i l y and m a r i t a l c o u n s e l l i n g . The c r u c i a l p o i n t i n the husband's support of h i s wife depended on whether h i s a t t i t u d e toward the scar was p o s i t i v e or n e g a t i v e . Schoenbert found the g r e a t e r support i n the m a r i t a l r e l a t i o n s h i p 46 b e f o r e surgery, the g r e a t e r the support a f t e r the mastectomy. I f a woman f e e l s u n a t t r a c t i v e , she may withdraw which may be i n t e r p r e t e d as a r e j e c t i o n by the husband. Schoenbert suggests p r e - o p e r a t i v e c o u n s e l l i n g f o r couples b e f o r e the mastectomy. XIV The Family K l e i n mentions t h a t the mastectomy may a f f e c t the 47 p a t i e n t ' s husband and f a m i l y . The husband may have concerns about h i s w i f e ' s l i f e expectancy and may be unsure o f h i s w i f e ' s new needs and e x p e c t a t i o n s of him. I f the husband's r e a c t i o n to u n c e r t a i n t y i s withdrawal, the wife may see t h i s as r e j e c t i o n . The c h i l d r e n of mastectomy p a t i e n t s may a l s o be f r i g h t e n e d by t h e i r mother's o p e r a t i o n and p o s s i b l e p o s t -o p e r a t i v e d e p r e s s i o n . A n s t i c e says t h a t the whole f a m i l y should know the p a t i e n t ' s problems so t h a t they can g i v e the p a t i e n t 48 support i n a time of p h y s i c a l and emotional h e a l i n g . P r a c t i c a l h e l p i n g may i n v o l v e working out a temporary regime of housework t o help her. F e l l n e r i n d i c a t e s t h a t the f a m i l y can h e l p or ho l d back the woman from r e c o v e r i n g by t h e i r own 49 emotional r e a c t i o n to the p a t i e n t ' s i l l n e s s . K l e i n says 13 t h a t f a m i l i e s who w i l l not al l o w negative emotion to be 50 expressed may p a r t i c u l a r l y impede the p a t i e n t ' s p r o g r e s s . XV A l t e r n a t i v e s t o Surgery The l i t e r a t u r e a l s o l o o k s i n t o a l t e r n a t i v e s t o surgery as one s o l u t i o n to the trauma and r e h a b i l i t a t i o n problems of mastectomy. Cope and Margarey d i s c u s s a v i a b l e a l t e r n a t i v e to 51 52 surgery i n modern hig h v o l t a g e i r r a d i a t i o n . ' Cope says "they (women wit h b r e a s t cancer) don't need to be r a i l r o a d e d 53 i n t o having t h e i r b r e a s t removed". XVI I n t e r v e n t i o n A. I n t r o d u c t i o n K l e i n says t h a t the th r e e g o a l s . o f r e h a b i l i t a t i o n f o r the woman with b r e a s t cancer a r e : one, she must mourn the l o s s of her b r e a s t and accept t h i s l o s s ; two, she must b u i l d her se l f - e s t e e m toward a self-image worthy of admiration and acceptance by o t h e r s ; and t h r e e , she must l i v e with the 54 p o s s i b i l i t y of r e c u r r e n c e f o r the next 10 years o f her l i f e . K l e i n suggests the f i r s t g u i d e l i n e f o r i n t e r v e n t i o n i s open, honest communication about the f u t u r e , h e l p i n g her to express her f e e l i n g s to d e a l with s i t u a t i o n a l c r i s e s and to know what to t e l l o thers i n her l i f e . The emphasis appears to be on the group approach i n h e l p i n g cancer p a t i e n t s although D i e t z f e e l s 55 i n d i v i d u a l c o n s i d e r a t i o n i s s t i l l primary. The Reach to Recovery Program, a l a y o r g a n i z a t i o n based on the " s e l f - h e l p " group concept has been very s u p p o r t i v e to women who wish follow-up support from h o s p i t a l to home pr o v i d e d by someone who has experienced a mastectomy t h e m s e l v e s . ^ P a r s a l l t a l k s about the value of p a t i e n t and f a m i l y groups 57 l e d by p r o f e s s i o n a l s . Couples groups have a l s o been s u c c e s s f u l , p a r t i c u l a r l y a t the H o s p i t a l f o r Cancer and A l l i e d Diseases i n New York, New York, i n a d j u s t i n g husbands 5 8 to the mastectomy. In h e l p i n g the p a t i e n t w i t h the task of r e b u i l d i n g s e l f - e s t e e m , D i e t z proposes the r e s t o r a t i o n of e x t e r n a l appearance and t o t a l use of the arm as i n s t r u m e n t a l 59 i n r e b u i l d i n g the p a t i e n t ' s s e l f - i m a g e . M i l l a r d f e e l s the o f f e r of cosmetic r e c o n s t r u c t i o n b e f o r e surgery has gr e a t power i n the p a t i e n t ' s p s y c h o l o g i c a l adjustment to the o p e r a t i o n , even though the b r e a s t i s not promised to be r e s t o r e d as new/" R e c o n s t r u c t i n g the b r e a s t i s a l s o a symbol t o the p a t i e n t t h a t the surgeon f e e l s there w i l l be 61 t o t a l recovery. C l o t h i n g i s o f t e n mentioned as an i s s u e i n r e h a b i l i t a t i o n . Aves w r i t e s an a r t i c l e about the types 6 2 of swimwear a v a i l a b l e t o post-mastectomy p a t i e n t s . B. C o u n s e l l i n g The c o u n s e l l i n g l i t e r a t u r e d i s c u s s e s the importance of p r e - o p e r a t i v e c o u n s e l l i n g . Markel suggests t h i s i n t e r v i e w can be a q u e s t i o n and answer p e r i o d t o d i s p e l misconceptions. K l e i n c o n s i d e r s t h i s time to be used to d i s c u s s changes i n 64 f a m i l y r o l e s and r e s p o n s i b i l i t i e s . H a r r e l l says the h o s p i t a l i z a t i o n p e r i o d p r o v i d e s an o p p o r t u n i t y of i n v o l v i n g the f a m i l y and h e l p i n g them to a d j u s t to changes.""' S e v e r a l authors s t r e s s the value of f a m i l y involvement i n treatment p l a n n i n g f o r the cancer p a t i e n t . The p h y s i c i a n s Worby and Babineau wrote about the v a l u e of the f a m i l y i n t e r v i e w with cancer p a t i e n t to "help a l l f a m i l y members 6 6 cope w i t h a mutually shared c r i s i s . " Liebman i l l u s t r a t e s the value of p e r i o d i c f a m i l y case conferences to help f a m i l y members u t i l i z e t h e i r f u l l r e s o u r c e s i n "medical, p s y c h o l o g i c , 6 7 and s o c i a l support." C. P r o f e s s i o n a l Roles: The S o c i a l Worker; Nurses; General P r a c t i t i o n e r ; R a d i o l o g i s t and Cancer C l i n i c Personnel; Surgeon; and the "Team". S o c i a l work r e s e a r c h e x p l o r e s the socioeconomic concerns of the cancer p a t i e n t . Feldman s t u d i e d 92 employable persons recovered from head/neck rectum/colon and b r e a s t cancer to see i f t h e r e was work d i s c r i m i n a t i o n with ex-cancer 6 8 p a t i e n t s . Although work problems and concerns of p a t i e n t s and t h e i r f a m i l i e s were p r e v a l e n t , o n l y one case of d i s c r i m i n a t i o n was found. He recommends t h a t c o u n s e l l i n g r esources be developed f o r p a t i e n t s who would not normally go to a s o c i a l s e r v i c e agency f o r h e l p . T o p i t z e r e x p l o r e d a v a r i e t y of p s y c h o s o c i a l f a c t o r s i n 80 mastectomy p a t i e n t s to see i f some v a r i a b l e s had p r e d i c t i v e v alue f o r the s o c i a l 69 worker i n h e l p i n g the p a t i e n t to adapt f o r surgery. P a t i e n t ' s a b i l i t y t o cope w i t h other s t r e s s e s , (age, m a r i t a l s t a t u s , emotional r e a c t i o n t o her mastectomy and f a m i l y 16 r e a c t i o n s ) had p r e d i c t i v e v alue although more r e s e a r c h was recommended to f u r t h e r i n v e s t i g a t e these f i n d i n g s . More knowledge about the s i g n i f i c a n t p s y c h o s o c i a l f a c t o r s upon the r e h a b i l i t a t i o n of the cancer p a t i e n t w i l l be of g r e a t v a l u e to the s o c i a l worker i n p l a n n i n g r e h a b i l i t a t i o n s e r v i c e s . Maguire i l l u s t r a t e s i n case examples some of the p s y c h o l o g i c a l and i n t e r r e l a t i o n s h i p problems f a c e d by . . 70 r e h a b i l i t a t i n g b r e a s t cancer p a t i e n t s and t h e i r f a m i l i e s . He recommends t h a t a nurse w i t h s p e c i a l t r a i n i n g p r ovide a c r u c i a l l i n k between the p a t i e n t , the f a m i l y , the h o s p i t a l and community care teams. Norman d i s c u s s e s the r o l e of the g e n e r a l p r a c t i t i o n e r i n becoming "her p a r t n e r a g a i n s t cancer" 71 a t every stage of i l l n e s s and r e h a b i l i t a t i o n . R a d i o l o g i s t s and medical personnel i n v o l v e d i n r a d i a t i o n therapy should a l s o r e c o g n i z e the i n d i v i d u a l f e a r s of p a t i e n t s and t h e i r misconceptions. Peck and Boland d i s c o v e r e d p a t i e n t s who are r e f e r r e d f o r r a d i a t i o n p o s t -s u r g i c a l treatment have many misconceptions which are not 72 c l a r i f i e d by m e d i c a l p e r s o n n e l . A f t e r treatments, fewer than o n e - t h i r d judged themselves improved by r a d i a t i o n although t h i s conception proved t o be e n t i r e l y f a l s e as 60% were f r e e from cancer 18-36 months l a t e r . The study recommends t h a t cancer c l i n i c p e r s o nnel should spend time w i t h p a t i e n t s to e x p l o r e p o s s i b l e doubts about treatment. Goldsmith w r i t e s about the surgeon's r o l e as c e n t r a l 17 73 to h e l p i n g the p a t i e n t cope w i t h her mastectomy. Although heavy caseloads o f t e n prevent surgeons from spending time w i t h t h e i r p a t i e n t s , i t i s c r u c i a l t h a t the surgeon know about the p a t i e n t ' s f e a r s and p o s s i b l e e f f e c t s on her f a m i l y . E r v i n r o u t i n e l y g i v e s i n f o r m a t i o n i n t e r v i e w s to both p a t i e n t and f a m i l y members so t h a t he i s aware of the f a m i l y • * . 4 . - 74 s i t u a t i o n . P o s t - o p e r a t i v e treatment and emotional r e h a b i l i t a t i o n must be seen as a u n i t and the team s e r v i c e seems to be one s u c c e s s f u l approach to t r e a t i n g "the whole person", mind and 75 body. H a r r e l l o f f e r s her p e r s o n a l account of her r e h a b i l i t a t i o n a f t e r mastectomy to emphasize the importance of t r e a t i n g both the medical and emotional aspects of r e c o v e r y : "Perhaps t h i s sounds o v e r l y dramatic but f o r a woman who has been p l a c e d i n the s t a r r i n g r o l e i t i s a drama wi t h a f i v e year run and very l i t t l e emphasis on the r o l e s t h a t ought to be p l a y e d . . . I found t h a t my t r i v i a l problems - headache, nausea and p a i n - were t r e a t e d a g g r e s s i v e l y . No one, however, bothered to t e l l me t h a t my c r y i n g s p e l l s were not unusual and t h a t they would pass. Consequently, my constant worry was t h a t I was having a nervous breakdown."76 The team approach i s r e p o r t e d i n the l i t e r a t u r e to be of v a l u e i n implementing more comprehensive r e h a b i l i t a t i o n programs f o r mastectomy p a t i e n t s . Trachtenberg d i s c u s s e s the problems 77 of working w i t h teams. Winick e v a l u a t e d the Post Mastectomy R e h a b i l i t a t i o n Group (PMRG) Team Program a t Memmorial Sloan-K e t t e r i n g Centre and found 84% of the p a t i e n t s s t u d i e d resumed 18 normal a c t i v i t i e s w i t h i n the f o u r month p o s t - o p e r a t i v e p e r i o d ; 74% r e t u r n e d to work w i t h i n three months o f t h e i r mastectomies 7 8 w h i l e 13% experienced moderate or severe emotional s t r e s s . Winick found t h a t "doing anything to keep busy" seemed to r e s u l t i n an e a s i e r adjustment. The p a t i e n t ' s age and p h y s i c a l c o n d i t i o n seemed to g r e a t l y a f f e c t r e h a b i l i t a t i o n . N i n e t y - e i g h t p e r c e n t of the p a r t i c i p a n t s s t u d i e d found t h i s team program to be h e l p f u l . D. C o n c l u s i o n Thus, the team approach, involvement of the f a m i l y , t r e a t i n g the "whole person", and use of s e l f - h e l p and p r o f e s s i o n a l l y l e d groups seem to be the c u r r e n t l y favoured approaches to r e h a b i l i t a t i n g the mastectomy p a t i e n t i n the l i t e r a t u r e . Follow-up care and i d e n t i f i c a t i o n of problems 79 a f t e r treatment i s over i s mentioned as a c e n t r a l i s s u e . In c o n c l u d i n g t h i s review, the r e s e a r c h e r notes t h a t although some s o c i a l work with cancer p a t i e n t s l i t e r a t u r e was found i n t h i s l i t e r a t u r e search, o n l y two a r t i c l e s d e a l s p e c i f i c a l l y w i t h b r e a s t cancer (other r e f e r e n c e s to s o c i a l work with p a t i e n t s w i t h a l l types of cancer may be found i n the B i b l i o g r a p h y ) . Moreover, the r e h a b i l i t a t i o n programs f o r b r e a s t cancer p a t i e n t s seem t o develop i n h o s p i t a l s or c l i n i c s where the surgery took p l a c e , or by medical s o c i e t i e s o u t s i d e treatment c e n t r e s . The r e s e a r c h e r d i d not f i n d examples of r e h a b i l i t a t i o n programs f o r b r e a s t cancer p a t i e n t s , s p e c i f i c a l l y i n s e t t i n g s l i k e the A. Maxwell Evans C l i n i c which provide p o s t - s u r g i c a l cancer treatments o n l y . However, these two l i m i t a t i o n s do not prevent the r e l e v a n c e of t h i s review t o t h i s study on b r e a s t cancer p a t i e n t s and t h e i r needs f o r r e h a b i l i t a t i o n s e r v i c e s , nor draw a t t e n t i o n away from the important r o l e of the s o c i a l worker. 2 0 Chapter I I I THE PROBLEM FORMULATION 1. The R a t i o n a l e f o r t h i s Study The r e s e a r c h e r was i n t e r e s t e d i n the s o c i a l work r o l e i n h e l p i n g cancer p a t i e n t s and t h e i r f a m i l i e s cope with the trauma of a cancer d i a g n o s i s , treatment, r e h a b i l i t a t i o n and "cure". In many cases, "cure" i m p l i e s l i v i n g with the t h r e a t o f r e c u r r e n t d i s e a s e . T h e r e f o r e , the r e s e a r c h e r f e l t t h a t an e x p l o r a t o r y i n v e s t i g a t i o n of f a m i l y needs c o n c u r r e n t l y with p a t i e n t needs might l e a d to new i n s i g h t s i n t o s e r v i c e s which he l p the f a m i l y support system to strengthen through a time of s t r e s s . The Maxwell Evans C l i n i c i s aware t h a t new b r e a s t cancer p a t i e n t s coming to the c l i n i c f o r r a d i a t i o n , chemotherapy or hormone post s u r g i c a l treatment, are undergoing a traumatic experience i n t h e i r l i v e s . Some of the p s y c h o l o g i c a l s t u d i e s of p a t i e n t s undertaken i n the past at t h i s C l i n i c have l e d to l i t t l e i n s i g h t s i n t o i n t e r v e n t i o n approaches. The C l i n i c wished a more p r a c t i c a l focus on p a t i e n t and f a m i l y needs which may l e a d to support s e r v i c e improvement. Hence, the r e s e a r c h e r and the C l i n i c chose socioeconomic concerns as a t o p i c which would lend i n s i g h t s i n t o the p a t i e n t ' s c u r r e n t l i f e s i t u a t i o n without c r e a t i n g undue s t r e s s a t an a l r e a d y s t r e s s f u l time f o r the p a t i e n t . The e t h i c a l q u e s t i o n a l s o arose of approaching an area i n the r e s e a r c h t h a t i s p o t e n t i a l l y very traumatic without being able to p r o v i d e immediate c l i n i c a l i n t e r v e n t i o n . Some of these areas d i s c u s s e d were f e a r of r e c u r r e n t d i s e a s e , death, p a i n , s e x u a l , and m a r i t a l r e l a t i o n s h i p s . The t o p i c "socioeconomic concerns" would uncover problems of a more p r a c t i c a l nature t h a t lend themselves more e a s i l y to p o s s i b l e s o l u t i o n s . The r e s e a r c h e r f e l t t h a t t h i s p r a c t i c a l focus would have a p s y c h o l o g i c a l l y h o p e f u l e f f e c t on p a t i e n t s who may be i n c r i s i s . 2. The S o c i a l Work Problem i n Need of Research The importance of f a m i l y members' involvement i s b e i n g r e c o g n i z e d by a l l medical and support s t a f f a t the A. Maxwell Evans C l i n i c . The f a m i l y i s being i n c r e a s i n g l y c o n s i d e r e d and i n v o l v e d i n p l a n n i n g . There i s a l s o i n c r e a s i n g emphasis on d i r e c t s e r v i c e to f a m i l i e s and follow-up i n the community. As more p a t i e n t s are being cared f o r a t home wit h community support s e r v i c e s , the f a m i l y i s t a k i n g a more a c t i v e r o l e . T h e r e f o r e , the s o c i a l work problem i n need of r e s e a r c h i s i n c r e a s i n g l y one of i d e n t i f y i n g the needs of f a m i l y members as w e l l as the needs of p a t i e n t s , to p r o v i d e a s e r v i c e to the " f a m i l y system". The c u r r e n t mandate of the s o c i a l s e r v i c e department i n v o l v e s r o u t i n e support s e r v i c e s to a l l "out-of-town" p a t i e n t s and f a m i l i e s and to those in-town p a t i e n t s and f a m i l i e s whose admission forms seem to i n d i c a t e a socioeconomic problem. Recently, the mandate of the s o c i a l s e r v i c e department has been expanded to i n c l u d e the person 22 who i s most r e s p o n s i b l e f o r the p a t i e n t ' s w e l l - b e i n g ( i . e . the primary c a r e - g i v e r ) . I f a p a t i e n t d i e s , the s o c i a l s e r v i c e department i s r e s p o n s i b l e f o r h e l p i n g the primary c a r e - g i v e r resume h i s normal l i f e . T h e r e f o r e a c u r r e n t i n t e r e s t of the s o c i a l s e r v i c e department concerns the p o t e n t i a l needs of f a m i l y members, as w e l l as of p a t i e n t s , which may a r i s e from socioeconomic change or changes i n f a m i l y r o l e s and r e l a t i o n s h i p s . The needs of p a t i e n t s and f a m i l y members have never been researched a t A. Maxwell Evans C l i n i c , although s t a f f s p e c u l a t e about ways of i d e n t i f y i n g needs from experiences and o b s e r v a t i o n s o f p a t i e n t s , as w e l l as b r i e f c o n t a c t s w i t h f a m i l y members. Although the l i t e r a t u r e supports the n o t i o n t h a t f a m i l y support i s c r u c i a l to the p a t i e n t ' s r e h a b i l i t a t i o n , there i s l i t t l e i n f o r m a t i o n r e g a r d i n g circumstances, a c t i v i t i e s or r e l a t i o n s h i p s i n the f a m i l y which s i g n a l a l a c k of support or a problem r e q u i r i n g a s s i s t a n c e . Socioeconomic change may be one source of p o t e n t i a l s t r e s s which s i g n a l s a problem i n the f a m i l y support system. The study w i l l i n v e s t i g a t e t h i s h y p o t h e s i s by e x p l o r i n g the socioeconomic concerns of f a m i l y members s i n c e the p a t i e n t ' s d i a g n o s i s . Thus the study w i l l s e rve as a p r e l i m i n a r y i n v e s t i g a t i o n of the needs of the f a m i l y members, p a r t i c u l a r l y those of the primary c a r e - g i v e r . 3. The Purpose of the Study In summary, the r e s e a r c h purpose of t h i s study i s to 23 i d e n t i f y some of the needs of b r e a s t cancer p a t i e n t s and t h e i r f a m i l i e s which a r i s e from socioeconomic change and changes i n r o l e s and r e l a t i o n s h i p s . T h i s i n f o r m a t i o n w i l l improve the p l a n n i n g and implementation of support s e r v i c e s to b r e a s t cancer p a t i e n t s r e c e i v i n g treatment a t the A. Maxwell Evans C l i n i c . 4. The Research Problem The r e s e a r c h problem which guides t h i s enquiry has been formulated i n t o the f o l l o w i n g q u e s t i o n s : "How has a d i a g n o s i s of b r e a s t cancer a f f e c t e d the l i f e s i t u a t i o n of 16 new b r e a s t cancer p a t i e n t s and t h e i r f a m i l i e s i n terms of t h e i r socioeconomic s i t u a t i o n i n c l u d i n g employment and f a m i l y r o l e s and r e s p o n s i b i l i t i e s ? " Under t h i s umbrella q u e s t i o n are f o u r s p e c i f i c q u e s t i o n s on the socioeconomic l i f e of the p a t i e n t which o u t l i n e s t h i s proposed e x p l o r a t i o n . 1. Are there changes s i n c e d i a g n o s i s i n work r e s p o n s i b i l i t i e s ? (e.g. husband and p a t i e n t going to work?) i n income? i n l i v i n g c o n d i t i o n s ? 2. Are t h e r e changes s i n c e d i a g n o s i s i n s o c i a l l i f e and r e l a t i o n s h i p s o u t s i d e the f a m i l y ? 3. Are there changes s i n c e d i a g n o s i s i n r o l e s and r e l a t i o n s h i p s w i t h i n the f a m i l y ? e.g., a) Are there changes i n c h i l d r e n ' s r e s p o n s i b i l i t i e s i n the f a m i l y ? 24 b) Who i s the primary c a r e - g i v e r i n the f a m i l y ? Has the d i a g n o s i s changed what he/she does f o r the p a t i e n t ? 4. Are there changes s i n c e d i a g n o s i s i n f e e l i n g s about s e l f ? ( i . e . f e e l i n g s toward adequacy and a t t r a c t i v e n e s s ? ) Changes i n the socioeconomic s t a t u s and i n r o l e s and r e s p o n s i b i l i t i e s may i n f l u e n c e r e l a t i o n s h i p s w i t h i n and o u t s i d e the f a m i l y and f e e l i n g s about o n e s e l f . As these aspects may a f f e c t the k i n d of support s e r v i c e r e q u i r e d , these two areas are a l s o being e x p l o r e d ( i . e . 2, 3, 4 above). The p r o j e c t w i l l i d e n t i f y the areas i n the p a t i e n t ' s socioeconomic s i t u a t i o n which have changed the most and the areas which have c r e a t e d the most concern, i n order to r a t e needs i n terms o f the p a t i e n t ' s p r i o r i t y . T h i s study w i l l a l s o t r y to i d e n t i f y the r e l a t i v e importance to new p a t i e n t s and t h e i r f a m i l i e s of concr e t e s e r v i c e s , ( e . g . homemaker) and those s e r v i c e s o f f e r i n g p s y c h o l o g i c a l support or c o u n s e l l i n g . T h i s i n f o r m a t i o n w i l l be of value i n a s s e s s i n g the amount, k i n d and t i m i n g of support s e r v i c e s needed by the p a t i e n t and her f a m i l y as new p a t i e n t s t o the c l i n i c . For example, a mother with f o u r c h i l d r e n may r e q u i r e immediate concrete s e r v i c e s (e.g. homemaker) b e f o r e she would be able t o d e a l w i t h her own emotional adjustment to treatment. 5. Working D e f i n i t i o n s For the purpose of t h i s study, "the primary c a r e - g i v e r " 25 i s d e f i n e d as the person who i s most r e s p o n s i b l e f o r the p a t i e n t ' s w e l l - b e i n g , p a r t i c u l a r l y i n terms of housekeeping and n u r s i n g care as w e l l as f i n a n c i a l and emotional support. "Socioeconomic concerns" i s d e f i n e d i n terms of f i n a n c e s , employment, housing, t r a n s p o r t a t i o n , f r i e n d s and r e l a t i v e s , f a m i l y l i f e s i t u a t i o n and r o l e s and r e s p o n s i b i l i t i e s . " F e e l i n g s about s e l f " i s d e f i n e d i n terms of p e r s o n a l a t t r a c t i v e n e s s , competency i n f a m i l y as a w i f e and/or mother, a b i l i t y t o be independent, f u l f i l l i n g o t h e r s ' e x p e c t a t i o n s , and m a i n t a i n i n g p r e s e n t l e v e l of income and l i v i n g c o n d i t i o n s . 6. Value Assumptions 1. Undergoing the trauma of mastectomy and f u r t h e r cancer treatment e n t i t l e s the p a t i e n t to any r e h a b i l i t a t i o n program t h a t w i l l help her r e g a i n normal a c t i v i t i e s and q u a l i t y of l i f e . 2. I f mastectomy and medical treatment a f f e c t s f a m i l y f u n c t i o n i n g , the p a t i e n t ' s f a m i l y members are a l s o e n t i t l e d t o any support programs which w i l l improve t h e i r q u a l i t y of l i f e . 3. The p a t i e n t should be i n v o l v e d i n her own cancer treatment p l a n n i n g and should v o i c e her i n d i v i d u a l p h y s i c a l and p s y c h o l o g i c a l needs to help her r e h a b i l i t a t i o n . 26 7. Independent V a r i a b l e s Which May A f f e c t P e r c e p t i o n s of Socioeconomic Change and Concerns P a t i e n t C h a r a c t e r i s t i c s The p a t i e n t s requested to p a r t i c i p a t e i n t h i s study are c o n s i d e r e d new p a t i e n t s i n May, 1978, of the b r e a s t o u t p a t i e n t C l i n i c a t the A. Maxwell Evans Cancer C l i n i c . These p a t i e n t s and t h e i r primary c a r e - g i v e r s a l l l i v e i n the lower mainland. Age, m a r i t a l s t a t u s , number of dependants, employment and pre s e n t l i v i n g s i t u a t i o n may have some a f f e c t on the amount of change and concern they p e r c e i v e as the r e s u l t of t h e i r d i a g n o s i s . The f e e l i n g s p a t i e n t s have about cancer as an i l l n e s s , about having cancer themselves, about p r e v i o u s i l l n e s s e s and about l o s i n g a b r e a s t may a l s o a f f e c t the changes they p e r c e i v e . Family C h a r a c t e r i s t i c s The f a m i l y members requested to p a r t i c i p a t e i n t h i s study are c o n s i d e r e d to be the p a t i e n t ' s primary " c a r e - g i v e r s " by C l i n i c s t a f f . Age, m a r i t a l s t a t u s , employment, present l i v i n g s i t u a t i o n and f a m i l y r e l a t i o n s h i p t o p a t i e n t may have some a f f e c t on the amount of change and concern they p e r c e i v e as a r e s u l t o f the d i a g n o s i s . The f e e l i n g s of primary c a r e - g i v e r s toward cancer as an i l l n e s s , toward the p a t i e n t ' s having cancer, toward the p a t i e n t ' s p r e v i o u s i l l n e s s e s and toward the p a t i e n t ' s l o s s of a b r e a s t may a l s o a f f e c t the changes they p e r c e i v e . 27 D i a g n o s i s and Treatment P l a n . The p a t i e n t s p a r t i c i p a t i n g i n t h i s study have a d i a g n o s i s o f b r e a s t cancer i n Stage I, I I , I I I or IV. The p o s s i b l e p o s t - s u r g i c a l m e d i c a l treatments planned f o r these p a t i e n t s are chemotherapy, adjuvant chemotherapy, i r r a d i a t i o n or hormonal treatment, administered a c c o r d i n g to i n d i v i d u a l p a t i e n t needs. The stage o f cancer and treatment p l a n may a f f e c t the p a t i e n t ' s p e r c e p t i o n of degree of change s i n c e the d i a g n o s i s . Stage I p a t i e n t s o f t e n r e c e i v e a course of 15 r a d i a t i o n treatments over a p e r i o d of 3 weeks a t which time t h e i r treatment i s over. Stage I I p a t i e n t s may be p a r t of an adjuvant chemotherapy program f o r one year which may f o l l o w a course of 15 r a d i a t i o n treatments. Adjuvant chemotherapy i s a p r e c a u t i o n a r y measure which reduces the chances of m e t a s t a s i c spread of a Stage I I cancer. S e r v i c e s Received P r i o r to Interview The p a t i e n t s i n t e r v i e w e d a l l have been v i s i t e d by a mastectomy v o l u n t e e r from the Mastectomy Vo l u n t e e r Program sponsored by the Canadian Cancer S o c i e t y d u r i n g t h e i r h o s p i t a l s t a y . Some p a t i e n t s may have r e c e i v e d help w i t h a r r a n g i n g accommodation or t r a n s p o r t a t i o n to treatments from the A. Maxwell Evans C l i n i c . Some p a t i e n t s may have r e c e i v e d home n u r s i n g from the V.O.N, branch i n t h e i r neighbourhood. The s e r v i c e s r e c e i v e d or not r e c e i v e d by p a t i e n t s may i n f l u e n c e responses t o c u r r e n t socioeconomic needs and the p a t i e n t ' s 28 p r e s e n t a t t i t u d e s toward cancer treatment a t the A. Maxwell Evans C l i n i c . Time Interviewed The p a t i e n t s would be i n t e r v i e w e d b e f o r e t h e i r treatment a t the C l i n i c b e g i n s , d u r i n g treatment, or a f t e r the treatment has ended, depending on the c h o i c e of the respondent. As t h i s i s a time of upheaval i n the p a t i e n t ' s l i f e , her p e r c e p t i o n of changes and concerns may change d a i l y , and c e r t a i n l y may be i n f l u e n c e d by t h e i r c u r r e n t experience w i t h cancer treatment. 8. Persons Concerned With T h i s Study The A. Maxwell Evans C l i n i c Human  Support Committee: A Subcommittee T h i s committee o r i g i n a t e d on an ad hoc b a s i s upon the i n i t i a t i v e of the l a t e Dr. Joe Lagey, the former d i r e c t o r of the r e s e a r c h and s o c i a l p o l i c y department of the United Way of Greater Vancouver, who was t e r m i n a l l y i l l with cancer and r e c e i v i n g treatment a t the C l i n i c . I n t e r e s t e d i n d e s i g n i n g a demonstration and r e s e a r c h p r o j e c t i n v o l v i n g f a m i l y c o u n s e l l i n g with cancer p a t i e n t s , Dr. Lagey c a l l e d together the C l i n i c s o c i a l s e r v i c e d i r e c t o r , the C l i n i c C h a p l a i n , two U.B.C. s o c i a l work p r o f e s s o r s , one s o c i a l work student ( m y s e l f ) , the e v a l u a t i o n r e s e a r c h d i r e c t o r of U n i t e d Way, a s o c i a l worker from Family S e r v i c e s of Greater Vancouver, the medical d i r e c t o r of the o u t p a t i e n t department a t the C l i n i c and one former p a t i e n t , t o d i s c u s s the f e a s i b i l i t y of such a p r o j e c t . L a t e r t h i s committee became re c o g n i z e d as a subcommittee of the Human Support Committee a t the C l i n i c . The e v a l u a t i o n r e s e a r c h d i r e c t o r o f Un i t e d Way, a member of t h i s subcommittee, has designed a comprehensive framework f o r a f i v e year p r o j e c t i n v e s t i g a t i n g the needs o f cancer p a t i e n t s and t h e i r f a m i l i e s . The subcommittee i s t h e r e f o r e i n t e r e s t e d i n the f i n d i n g s o f t h i s study and a l s o i n the experiences of the i n t e r v i e w e r i n c o n t a c t i n g and i n t e r v i e w i n g cancer p a t i e n t s and t h e i r f a m i l i e s . T h i s i n f o r m a t i o n w i l l h e l p the committee p l a n a l a r g e s c a l e p r o j e c t o f cancer p a t i e n t and f a m i l y needs i n v o l v i n g men and women, w i t h a l l types and stages o f cancer, and d i f f e r i n g p r o g n o s i s . Family S e r v i c e s of Greater Vancouver A f a m i l y c o u n s e l l i n g s e r v i c e may be purchased from f a m i l y s e r v i c e s by the A. Maxwell Evans C l i n i c f o r a t r i a l p e r i o d . Family S e r v i c e s , represented on the subcommittee d e s c r i b e d above, i s t h e r e f o r e i n t e r e s t e d i n the concerns and needs of f a m i l i e s o f b r e a s t cancer p a t i e n t s t h a t w i l l r e s u l t from t h i s study. The School o f S o c i a l Work, U.B.C. The r e s e a r c h f a c u l t y members a t the School o f S o c i a l Work i s i n t e r e s t e d i n e x p l o r i n g the r o l e o f the s o c i a l worker i n working wi t h b r e a s t cancer p a t i e n t s and t h e i r f a m i l i e s . L i t t l e i s known about the f a m i l y support system i n coping 30 w i t h b r e a s t cancer but i t i s r e c o g n i z e d by many medical p r o f e s s i o n a l s t o be v i t a l to a p a t i e n t ' s r e h a b i l i t a t i o n . T h e r e f o r e , t h i s r e s e a r c h w i l l focus on the socioeconomic l i f e o f the f a m i l y system to e x p l o r e e x i s t i n g supports i n the f a m i l y and p o s s i b l e needs f o r s e r v i c e s . The Maxwell Evans C l i n i c A. Maxwell Evans C l i n i c a l T r i a l s Committee, composed of three d o c t o r s and the C l i n i c Chaplan and the s o c i a l s e r v i c e department, were a c t i v e l y i n v o l v e d i n the problem f o r m u l a t i o n and design of t h i s r e s e a r c h . T h e i r i n t e r e s t has been d i s c u s s e d under the headings "The Problem Formulation" and "The Design". 31 Chapter IV THE DATA COLLECTION AND DESIGN 1. The Design C o n s i d e r a t i o n s The purpose of t h i s r e s e a r c h i s to i d e n t i f y the needs of p a t i e n t s and primary c a r e - g i v e r s which r e s u l t from changes i n r o l e s and r e l a t i o n s h i p s and socioeconomic change. T h e r e f o r e , t h i s study i s concerned i n i t i a l l y w ith measuring: 1) how much change and what kinds of changes are p e r c e i v e d by new b r e a s t cancer p a t i e n t s and t h e i r f a m i l i e s ; and 2) how much concern was f e l t about each o f these changes. Subsequently, the study i s concerned w i t h documenting the needs which a r i s e from these changes and concerns. T h e r e f o r e , i n choosing the design and r e s e a r c h instrument, the r e s e a r c h e r c o n s i d e r e d what are the best approaches to measuring socioeconomic change, changes i n r o l e s and r e l a t i o n s h i p s , and degree of concern r e l a t i v e to these changes, and how to document p a t i e n t and f a m i l y needs. The r e s e a r c h e r chose t o i d e n t i f y needs f i r s t l y through respondents' requests f o r s e r v i c e s and h e l p , and secondly through the i n t e r v i e w e r ' s p e r c e p t i o n of needs from the f i n d i n g s . T h e r e f o r e a p e r s o n a l i n t e r v i e w was c o n s i d e r e d the best method of d ata c o l l e c t i o n . As the focus i s not onl y q u a n t i f y i n g amounts of change and concern but a l s o documenting what these changes are, and how concerns are handled, w i t h or without s e r v i c e s , the r e s e a r c h e r chose a fundamentally e x p l o r a t o r y design to allow f o r f l e x i b i l i t y i n data c o l l e c t i o n , p e r s o n a l i n t e r v i e w i n g technique and data a n a l y s i s . T h i s study i s d e s c r i p t i v e i n de s i g n i n t h a t the f i n d i n g s w i l l d e s c r i b e how 16 p a t i e n t s and t h e i r primary c a r e - g i v e r s p e r c e i v e changes d u r i n g the time they are coping with a s i m i l a r experience, 1. e. a b r e a s t cancer d i a g n o s i s , a mastectomy and follow-up treatment, and w i l l note t h e i r needs which a r i s e from t h i s ' experience. There w i l l be no t e s t i n g o f hy p o t h e s i s or f i n d i n g c a u s a l r e l a t i o n s h i p s of the more r i g o r o u s e x p l a n a t o r y d e s i g n . Hypothesis f o r f u r t h e r r e s e a r c h w i l l be formulated and c l a r i f i e d from the f i n d i n g s i n t h i s study. 2. Sampling C o n s i d e r a t i o n s and Design The C l i n i c was h e s i t a n t to i n v o l v e p a t i e n t s w i t h poor prognoses and t h e i r f a m i l i e s i n a r e s e a r c h study. Breast and c e r v i c a l cancer p a t i e n t s were suggested as two p o s s i b l e groups of s u b j e c t s with good prognoses. Due to the d i v e r s i t y of treatment approaches t o any one type o f cancer, the r e s e a r c h e r f e l t a homogenous sample of one type of cancer would be best f o r t h i s e x p l o r a t o r y study. The f a c t t h a t b r e a s t cancer u s u a l l y a f f e c t s women, i n c r e a s e s the p o t e n t i a l homogeneity of the sample. Thus, b r e a s t cancer was chosen as the t a r g e t p o p u l a t i o n . The o u t p a t i e n t department was i n t e r e s t e d i n a study i n v o l v i n g t h e i r o u t p a t i e n t b r e a s t p a t i e n t s and t h e r e f o r e o f f e r e d to a s s i s t i n the s e l e c t i o n of the sample. Procedure i n Secu r i n g Permission to  Interview P a t i e n t s i n the C l i n i c The study p r o p o s a l was presented t o the Human Support Committee and then t o the C l i n i c a l T r i a l s Committee of the Cancer C o n t r o l Agency of B r i t i s h Columbia f o r t h e i r a p p r o v a l . Once the p r o p o s a l was passed through these committees, Dr. B a l l a n t y n e , D i r e c t o r of the New O u t - P a t i e n t s C l i n i c at the A. Maxwell Evans Cancer C l i n i c f o l l o w e d t h i s procedure to secure p e r m i s s i o n to i n t e r v i e w p a t i e n t s : 1. A d i s c u s s i o n w i t h Dr. Goodman, D i r e c t o r of the C l i n i c e s t a b l i s h i n g t h a t the study c o u l d take p l a c e w i t h p a t i e n t s r e f e r r e d to the A. Maxwell Evans C l i n i c . 2. A request t o the Forms and Documents Committee t h a t the l e t t e r to the p a t i e n t (Appendix C) c o u l d be entered i n the p a t i e n t ' s f i l e f o r the f a m i l y and C l i n i c d o c t o r s . 3. A d i s c u s s i o n w i t h the Radiotherapy and Med i c a l Oncology Departments t h a t some of t h e i r p a t i e n t s would be p a r t i c i p a t i n g i n the study. 4. A d i s c u s s i o n w i t h the 5 other New O u t - P a t i e n t d o c t o r s i n t r o d u c i n g the p r o j e c t and r e q u e s t i n g them to s e l e c t the sample from t h e i r new r e f e r r a l s i n May 1978 ac c o r d i n g t o the sample c r i t e r i a . These procedures, developed f o r the f i r s t time, once e s t a b l i s h e d operated s u c c e s s f u l l y and a l l C l i n i c p e r s o nnel i n v o l v e d were w e l l informed. 34 The sample was s e l e c t e d by Dr. B a l l a n t y n e and the f i v e other New P a t i e n t C l i n i c d o c t o r s from the approximately 55 new b r e a s t p a t i e n t s r e f e r r e d to the New Out - P a t i e n t s C l i n i c d u r i n g the month of May i n 1978. The sampling design was s t r a t i f i e d to account f o r C l i n i c a l Stage I, I I , I I I and IV. The medical stage of cancer r e f e r s t o the s e v e r i t y of d i s e a s e i n terms of m e t a s t a s i c spread. Stage I, the e a r l i e s t stage of cancer, i n v o l v e s no metastases and has the best p r o g n o s i s . Stage IV p a t i e n t s have a "guarded" or "poor" p r o g n o s i s , depending on the extent o f the metastases and the p a r t of the body the cancer i s found. The p a t i e n t s from C l i n i c a l Stages I , I I , I I I and IV, who agree to p a r t i c i p a t e , would compose the sample of 16 p a t i e n t s and t h e i r f a m i l i e s . The women s e l e c t e d to p a r t i c i p a t e must be l i v i n g i n the lower mainland, have t h e i r primary c a r e - g i v e r a v a i l a b l e f o r i n t e r v i e w i n g , have a d i a g n o s i s of b r e a s t cancer and be co n s i d e r e d a new r e f e r r a l to the C l i n i c i n May. The p a t i e n t c o u l d be co n s i d e r e d a new p a t i e n t of the C l i n i c i n May but have r e c e i v e d a cancer d i a g n o s i s s e v e r a l years before and now be e x p e r i e n c i n g r e c u r r e n t d i s e a s e . P a t i e n t s not s u i t a b l e f o r t h i s study would be excluded a t the d i s c r e t i o n of Dr. Crawford and Dr. B a l l a n t y n e . The r e p r e s e n t a t i o n of t h i s sample would be i n terms of the c l i n i c a l stages o f cancer r e f e r r e d to the C l i n i c d u r i n g the month of May. The r e s e a r c h e r i s aware t h a t the t o t a l r e p r e s e n t a t i o n of t h i s group of women as b r e a s t cancer p a t i e n t s i s unknown. However, t h i s degree of r e p r e s e n t a t i o n i s l e g i t i m a t e i n an e x p l o r a t o r y - d e s c r i p t i v e study. Although the stage of cancer would be taken i n t o account by the sampling d e s i g n , the demographic and b i o g r a p h i c a l v a r i a b l e s would be c o n s i d e r e d an a s s e t to t h i s e x p l o r a t o r y d e s i g n . T h i s study would e x p l o r e whether d i f f e r e n c e s i n age, m a r i t a l s t a t u s , economic s t a t u s , p r e v i o u s b i o g r a p h i c a l events and the stage of cancer i n f l u e n c e d the socioeconomic impact of the d i a g n o s i s and the r e s u l t i n g needs f o r support s e r v i c e s . T h i s p r o j e c t , t h e r e f o r e , would r e l y on c o n t r o l through the s e l e c t i o n of s u b j e c t s by stage of cancer. Due to t h i s l i m i t e d attempt a t c o n t r o l , t h i s study would not attempt to draw c o n c l u s i v e evidence about c a u s a l r e l a t i o n s h i p s . However, the f i n d i n g s would i d e n t i f y c e r t a i n socioeconomic s i t u a t i o n s which seem to i n d i c a t e p a r t i c u l a r needs and s e r v i c e s . The s e l e c t i o n of the sample would s t a r t May 1, 1978, as new b r e a s t cancer p a t i e n t s are r e f e r r e d to the C l i n i c . New p a t i e n t s would be i n t r o d u c e d to t h i s p r o j e c t by t h e i r doctor a t the New P a t i e n t s C l i n i c d u r i n g one of t h e i r i n i t i a l appointments at the C l i n i c . The d o c t o r would g i v e to each p a t i e n t the l e t t e r of i n t r o d u c t i o n , found i n Appendix A. He would then f i l l out an i n f o r m a t i o n sheet about the p a t i e n t to be sent to the S o c i a l S e r v i c e Department f o r the r e s e a r c h , found i n Appendix C. At t h i s time, the p a t i e n t ' s f a m i l y d o c t o r would a l s o be sent an e x p l a n a t o r y l e t t e r from the A. Maxwell Evans C l i n i c o u t l i n i n g the purpose of t h i s study found i n Appendix B. The p a t i e n t and her primary c a r e - g i v e r ( f a m i l y member) would be i n t e r v i e w e d i n separate s e s s i o n s , once wi t h s i m i l a r q u e s t i o n n a i r e s , e i t h e r i n her own home or i f p r e f e r r e d , a t the School o f S o c i a l Work. 3. C o n f i d e n t i a l i t y Respondents were assured o f c o n f i d e n t i a l i t y i n the p a t i e n t ' s l e t t e r of i n t r o d u c t i o n (Appendix A) and by the re s e a r c h e r i n person a t the time o f the i n t e r v i e w . The f i n d i n g s have been made anonymous through cumulative t o t a l s and g e n e r a l i z i n g any d e t a i l e d p e r s o n a l i n f o r m a t i o n . I f a s p e c i f i c r e f e r e n c e i s made to one i n d i v i d u a l ' s response, the i d e n t i f y i n g l e t t e r of the name has been changed, and no other i d e n t i f y i n g i n f o r m a t i o n i s g i v e n . 4. Instrument Devised For T h i s Study The C l i n i c requested t h a t the r e s e a r c h e r compose an o r i g i n a l measurement of change and concern without the use of known p s y c h o l o g i c a l measurements of a n x i e t y or rec e n t s t r e s s f u l events. The Human Support Committee's subcommittee, the C l i n i c a l T r i a l s Committee and the D i r e c t o r of the C l i n i c ' s s o c i a l s e r v i c e department c o n t r i b u t e d t h e i r suggestions and areas of i n t e r e s t d u r i n g the f o r m u l a t i o n of the i n t e r v i e w schedule. An i n t e r v i e w schedule was composed to form two s c a l e s to measure the amount of change and degree of concern p e r c e i v e d by the respondents. One s c a l e measured degree o f change a c c o r d i n g to respondent's p e r c e p t i o n of "a g r e a t d e a l , somewhat, or no change" ac r o s s a number of socioeconomic areas of p o t e n t i a l change. The second s c a l e measured the amount of concern or a n x i e t y about any of the changes mentioned or any of the socioeconomic v a r i a b l e s of p o t e n t i a l change u s i n g the same c a l l i b r a t i o n form, i . e . "a g r e a t d e a l , somewhat, and no concern". The q u e s t i o n n a i r e was d i v i d e d i n t o f i v e areas of p o t e n t i a l change: 1. Housing and L i v i n g S i t u a t i o n 2. Work and T r a n s p o r t a t i o n 3. Family Roles and R e s p o n s i b i l i t i e s 4 . R e l a t i o n s h i p s w i t h Family and F r i e n d s 5 . F e e l i n g s about S e l f . Two i n t e r v i e w schedules of a s i m i l a r form were d e v i s e d , one f o r the p a t i e n t and a s h o r t e r form f o r the primary c a r e - g i v e r (found i n Appendix E ) . I n t e r v i e w i n g the primary c a r e - g i v e r i s an important p a r t of the d e s i g n of t h i s study f o r two reasons. F i r s t l y , an attempt to measure the impact of b r e a s t cancer d i a g n o s i s upon a p a t i e n t ' s socioeconomic s i t u a t i o n i s incomplete without i n c l u d i n g the f a m i l y as a primary source of i n f o r m a t i o n . Secondly, the i n t e r v i e w i n g of a f a m i l y member w i l l compare changes the p a t i e n t p e r c e i v e s w i t h changes her f a m i l y may p e r c e i v e as w e l l as g a i n i n f o r m a t i o n about changes f a m i l y members themselves experience as a r e s u l t of the d i a g n o s i s . T h e r e f o r e , the i n t e r v i e w s w i t h the p a t i e n t and primary c a r e - g i v e r would take p l a c e on the same day, i n separate i n t e r v i e w s . B a s e l i n e Data As the framework of t h i s study i s on the impact of the d i a g n o s i s on the socioeconomic l i f e s i t u a t i o n of the p a t i e n t , b a s e l i n e data w i l l be c o l l e c t e d with r e s p e c t to r e c e n t l i f e change events, p r e v i o u s experiences with cancer and other i l l n e s s , socioeconomic s i t u a t i o n s , f a m i l y and work r o l e s , and r e s p o n s i b i l i t i e s p r i o r to d i a g n o s i s . Information w i l l a l s o be c o l l e c t e d on p a s t , c u r r e n t and expected cancer treatment from p a t i e n t p e r c e p t i o n s and m e d i c a l f i l e s . 5. Major Source of Data The major source of data i s a p e r s o n a l i n t e r v i e w of about lh - 2 hours i n l e n g t h with the p a t i e n t s and t h e i r primary c a r e - g i v e r s . Other sources of data were p e r s o n a l i n t e r v i e w s w i t h s o c i a l s e r v i c e and o u t p a t i e n t c l i n i c s t a f f a t the A. Maxwell Evans C l i n i c . The medical i n f o r m a t i o n compiled from the f i l e s of the 16 p a t i e n t s i n t e r v i e w e d may be found i n Appendix C. 6. A d m i n i s t r a t i o n of the Interview Schedule The P r e - t e s t A p r e - t e s t of the i n t e r v i e w schedule was c a r r i e d out w i t h two p a t i e n t s and t h e i r primary c a r e - g i v e r s . The f i r s t lady experienced her mastectomy two years ago, and the second experienced her mastectomy s i x months p r i o r to her i n t e r v i e w . One primary c a r e - g i v e r was a husband and the other an a d u l t son. The primary c a r e - g i v e r i n t e r v i e w was changed to allow f o r a more open-ended response to major concerns, as both primary c a r e - g i v e r s emphasized t h a t t h e i r main concerns d i d not c e n t r e around socioeconomic change. As a r e s u l t of t h i s p r e - t e s t , the p a t i e n t i n t e r v i e w was changed w i t h r e s p e c t to the l a s t s e c t i o n as "changes i n s e l f " was f e l t t o be a t h r e a t e n i n g note to end the q u e s t i o n n a i r e . The phrase "unable to say" was added as the f i r s t o p t i o n to Q. VI 1. to enable a respondent to d e c l i n e responding i f she f e e l s uncomfortable wi t h t h i s t o p i c . 7. I n t e r v i e w i n g Procedure As was p r e v i o u s l y o u t l i n e d i n the sampling d e s i g n , a l e t t e r (Appendix A) g i v e n to the p a t i e n t d u r i n g a v e r b a l i n t r o d u c t i o n t o the p r o j e c t by her o u t p a t i e n t d o c t o r , mentioned t h a t the r e s e a r c h e r would be t e l e p h o n i n g i n the next week to arrange an i n t e r v i e w time. The telephone c o n v e r s a t i o n o u t l i n e i s found i n Appendix D. As one v i s i t would be made to each p a t i e n t and f a m i l y member, the i n t e r v i e w e r t r i e d to arrange the same i n t e r v i e w time f o r both. T h i s would a l s o i n c r e a s e the r e l i a b i l i t y and v a l i d i t y of a comparison between p a t i e n t and her primary c a r e - g i v e r . The i n t e r v i e w began wi t h a g e n e r a l i n t r o d u c t i o n to the p r o j e c t f o l l o w e d by a s h o r t d i s c u s s i o n about who would 40 l i k e t o be i n t e r v i e w e d f i r s t . Respondents were allowed to t r a n s g r e s s from scheduled t o p i c s i f the i n t e r v i e w e r f e l t the t r a n s g r e s s i o n would l e a d t o i n s i g h t s i n t o c u r r e n t changes and concerns. 8. Data A n a l y s i s Design Information gathered d u r i n g the i n t e r v i e w w i l l be co n s i d e r e d a c c o r d i n g to the f i v e areas of p o t e n t i a l change and concern p r e v i o u s l y mentioned under the heading "Instrument Devised f o r t h i s Study." T h i s a n a l y s i s w i l l attempt to answer the r e s e a r c h q u e s t i o n s posed under the heading "The Research Problem" of the problem f o r m u l a t i o n . Any independent v a r i a b l e s mentioned under the heading "Independent V a r i a b l e s " which seem to the r e s e a r c h e r to i n f l u e n c e p e r c e p t i o n of changes and concerns a g r e a t d e a l , w i l l be noted. Responses to s i m i l a r q u e s t i o n s asked o f both p a t i e n t and f a m i l y member w i l l be seen as responses from one f a m i l y system, and d e s c r i b e d a c c o r d i n g l y . F i n d i n g s from d i s c u s s i o n s not r e l a t e d to the f i v e areas of p o t e n t i a l change w i l l be d i s c u s s e d under separate headings. Some medical i n f o r m a t i o n w i l l be summarized i n t a b l e form. Due to the small sample s i z e , the number of cases r a t h e r than percentages w i l l be used t o i n d i c a t e the number of responses t o each q u e s t i o n . Chapter V STUDY FINDINGS 1. I n t r o d u c t i o n - Problems i n Sampling and Data C o l l e c t i o n From the t o t a l p o p u l a t i o n of 55 new b r e a s t cancer p a t i e n t s r e f e r r e d t o t h i s C l i n i c i n May, 23 p a t i e n t s f u l f i l l e d the requirements of the sample and were i n t r o d u c e d to the p r o j e c t . Of the remaining 32 p a t i e n t s not requested to p a r t i c i p a t e , approximately 27 were l i v i n g o u t s i d e the lower mainland. The remaining p a t i e n t s d i d not f i t i n t o the c r i t e r i a o f the sample, or were immediate r e f u s a l s . Seven o f the 2 3 p a t i e n t s of the sample were not i n t e r v i e w e d d u r i n g the i n t e r v i e w p e r i o d of May 15 to June 15 f o r the f o l l o w i n g reasons: two p a t i e n t s c o u l d not be contacted by telephone; one f a m i l y d o c t o r telephoned the r e s e a r c h e r to request t h a t h i s p a t i e n t be removed from the sample as he f e l t she would need p s y c h i a t r i c treatment; (This lady was subsequently seen by the C l i n i c s o c i a l worker because she was extremely upset. Her prognosis was o n l y f a i r and her husband was unemployed.) one woman s a i d she would l i k e to be i n t e r v i e w e d i n J u l y a f t e r her treatments were over which would be too l a t e f o r the r e s e a r c h e r ; another p a t i e n t who l i v e d 5 0 m i l e s away from the C l i n i c s a i d she was not r e a l l y i n t e r e s t e d ; another p a t i e n t wished to be i n t e r v i e w e d i n s e v e r a l months when her husband r e t u r n e d from a commercial f i s h i n g t r i p ; one husband who was not t o l d about the study by h i s w i f e r e f u s e d to p a r t i c i p a t e when the i n t e r v i e w e r a r r i v e d a t h i s home as h i s wife was as l e e p . The demographic c h a r a c t e r i s t i c s of the 7 p a t i e n t s d e s c r i b e d above were not a t y p i c a l of the r e s t of the sample a c c o r d i n g t o age, m a r i t a l s t a t u s , l i v i n g s i t u a t i o n or pr o g n o s i s . The r e s e a r c h e r assumes t h e r e f o r e t h a t a s o c i a l s i t u a t i o n may have i n f l u e n c e d the p a t i e n t ' s d e c i s i o n not to p a r t i c i p a t e . O v e r a l l t h e r e f o r e , the p a t i e n t s contacted d i d not show any h e s i t a n c y or r e s i s t a n c e to p a r t i c i p a t i n g i n t h i s r e s e a r c h p r o j e c t . The good response r a t e and p a r t i c i p a n t c o - o p e r a t i o n was l a r g e l y due to the c a r e f u l p r e p a r a t i o n made by the New P a t i e n t s C l i n i c d o c t o r s concerning the i n t r o d u c t i o n of t h i s p r o j e c t t o the p a r t i c i p a n t s . S i x t e e n new b r e a s t cancer p a t i e n t s were i n t e r v i e w e d . In two cases, a f a m i l y member was not i n t e r v i e w e d . In the f i r s t case, (Mrs. A.) the husband agreed t o the i n t e r v i e w but l e f t the house when I a r r i v e d to i n t e r v i e w him. The re s e a r c h e r was t o l d by h i s wi f e t h a t he s a i d "I see no change so why bother to be i n t e r v i e w e d . " T h i s case w i l l be a l s o d e s c r i b e d l a t e r i n more d e t a i l . In the second case, (Mrs. D. the p a t i e n t requested t h a t I t a l k t o her alone without any of her f a m i l y knowing about the v i s i t . The r e s e a r c h e r found t h a t there was a problem co n c e r n i n g the mastectomy i n t h i s f a m i l y , which w i l l be d i s c u s s e d l a t e r . In terms of r e p r e s e n t a t i v e n e s s of the 4 stages of cancer, the p a t i e n t s f u l f i l l i n g the requirements of the sampl r e p r e s e n t e d a h i g h e r p r o p o r t i o n of Stage I cancers than found i n the t o t a l p o p u l a t i o n . S t r a t i f i c a t i o n to r e p r e s e n t the c o r r e c t p r o p o r t i o n s of each stage was t h e r e f o r e not achieved i n the time allowed although a sample of each stage i s r e p r e s e n t e d . The f o l l o w i n g t a b l e compares the number of p a t i e n t s i n each stage i n the t o t a l p o p u l a t i o n of new b r e a s t p a t i e n t s i n May to the number i n each stage t h a t were i n t e r v i e w e d : (Data was gathered by the D i r e c t o r of the New P a t i e n t s ' C l i n i c . ) TABLE 1 T o t a l No. of New B r e a s t P a t i e n t s i n May Stage 1 = 1 6 70% Stage 2 = 2 3 Stage 3 30% = 16 Stage 4 T o t a l 100% = 55 T o t a l No. of P a t i e n t s I n t e r -viewed Stage 1 = 11 Stage 2 3 Stage 3 1 Stage 4 1 T o t a l = 16 As the above t a b l e i n d i c a t e s , Stage I i s over r e p r e s e n t e d , w h i l e Stages I I , I I I and IV are under r e p r e s e n t e d . 2. Impressions About I n t e r v i e w i n g Cancer  P a t i e n t s and T h e i r F a m i l i e s G e n e r a l l y speaking, a l l p a t i e n t s and primary c a r e - g i v e r s were i n t e r e s t e d i n t a l k i n g w i t h the i n t e r v i e w e r and asked a v a r i e t y of q u e s t i o n s about c l o t h e s , treatment and p r o s t h e s e s . The husbands of the p a t i e n t s seemed somewhat anxious about speaking with me, p a r t i c u l a r l y about the q u e s t i o n s I might ask. A t the end of the i n t e r v i e w , most of the husbands were v i s i b l y r e l i e v e d t h a t the i n t e r v i e w had been non-threatening. For example, Mr. E. and Mr. F. i n t e r r u p t e d s e v e r a l times with c o f f e e and jokes to see i f e v e r y t h i n g was a l r i g h t . I n t e r r u p t i o n s of t h i s k i n d c o u l d be a major source of e r r o r as i t was d i f f i c u l t f o r the r e s e a r c h e r to r e t u r n to s e r i o u s t o p i c s a f t e r such d i s r u p t i o n s . S e v e r a l p a t i e n t s were a l s o anxious about speaking with me i n i t i a l l y , although not to the same extent as t h e i r primary c a r e - g i v e r s . The two s i s t e r s and two daughters who were primary c a r e - g i v e r s were n o t i c e a b l y not anxious about being i n t e r v i e w e d and c o n f i d e n t l y r e l a t e d how they were h e l p i n g . The r e s e a r c h e r s p e c u l a t e s about the a n x i e t y o f husbands wi t h r e s p e c t to the i n t e r v i e w . Some husbands who seemed to be anxious and d e f e n s i v e about t h e i r r o l e i n t h i s s i t u a t i o n , (,e.g. Mr. B.) may have f e l t the r e s e a r c h e r was "checking up on them." A c c o r d i n g to the l i t e r a t u r e a b r e a s t cancer d i a g n o s i s a f f e c t s the husband-wife r e l a t i o n s h i p on many l e v e l s i . e . l i f e expectancy, awareness of m o r t a l i t y , sexual r e l a t i o n s h i p and 8 0 l i f e s t y l e . T h e r e f o r e , t h i s i s a very s t r e s s f u l and anxious time f o r the husband r e g a r d l e s s of the r e s e a r c h i n t e r v i e w . A l l o w i n g p a t i e n t and f a m i l y member to d i s c u s s anything of p r e s e n t concern reduced p a r t i c i p a n t ' s a n x i e t y to focus on socioeconomic concerns i f t h i s was not t h e i r immediate concern, and enabled the i n t e r v i e w to run smoothly i n a c o n v e r s a t i o n a l manner. In the r e s e a r c h e r ' s o p i n i o n , a l l the i n t e r v i e w s ended i n a p o s i t i v e way because the i n t e r v i e w e r was w i l l i n g to d i s c u s s any t o p i c which was of i n d i v i d u a l i n t e r e s t to the p a r t i c i p a n t . Moreover, the r e s e a r c h e r spent some time t a l k i n g about h e r s e l f to the p a t i e n t and f a m i l y which a l s o seemed to reduce a n x i e t y and "break the i c e " . D e n i a l of Change and Concern P a t i e n t s and f a m i l y members o f t e n seemed h e s i t a n t to admit concerns and changes throughout the i n t e r v i e w . P o s s i b l y respondents f e l t these comments to a r e s e a r c h e r would i n d i c a t e t h a t they were having s e r i o u s problems or d i f f i c u l t i e s i n "coping". T h i s response may r e f l e c t the i n f l u e n c e of s o c i a l d e s i r a b i l i t y on the respondent to show conf i d e n c e and e x p e r t i s e i n h a n d l i n g t h e i r own s i t u a t i o n . Furthermore, Peck says d e n i a l of change or concern i s o f t e n an e f f e c t i v e temporary coping s t r a t e g y f o r the p a t i e n t who wishes to keep her l i f e s t a b l e and secure so she may cope wi t h f u t u r e unavoidable changes 81 i n her body i n age and h e a l t h . T h e r e f o r e the r e s e a r c h e r took the p o s s i b i l i t y of d e n i a l of change and concern i n t o account by l i s t e n i n g f o r a respondent's c o n f l i c t i n g or ambiguous statements about the same s u b j e c t . T h i s approach towards 46 i d e n t i f i c a t i o n of d e n i a l formed the b a s i s of d e f i n i n g t h i s concept f o r the purposes of t h i s study. As d e n i a l was found to be important as an u n a n t i c i p a t e d v a r i a b l e i n t h i s study, a d e f i n i t i o n was needed f o r the purposes of data a n a l y s i s and p r e s e n t i n g the f i n d i n g s . A working d e f i n i t i o n of " d e n i a l " would be as f o l l o w s : the r e s e a r c h e r ' s awareness of a respondent's c o n f l i c t i n g or ambiguous statements about the same i s s u e d u r i n g the i n t e r v i e w . T h i s d e f i n i t i o n o f " d e n i a l " was t h e r e f o r e not the u s u a l p s y c h o a n a l y t i c d e f i n i t i o n or e x p l a n a t i o n of t h i s defense mechanism but simply a way of i d e n t i f y i n g c o n f l i c t i n g i n f o r m a t i o n c o l l e c t e d d u r i n g the i n t e r v i e w . For example, Mrs. M. responded to a q u e s t i o n on the i n t e r v i e w schedule t h a t she was not concerned about anything and e v e r y t h i n g was j u s t the same. However, i n c o n v e r s a t i o n she mentioned she was not s l e e p i n g and was upset because she f e l t she c o u l d not have "company" anymore. Statements l i k e these i n d i c a t e d some d e n i a l of change and concern to the r e s e a r c h e r . The r e s e a r c h e r found t h a t the p a r t i c i p a n t s were c o n s i d e r a b l y more i n v o l v e d toward the end of the i n t e r v i e w i f the r e s e a r c h e r spent time to d i s c u s s these areas o f c o n f l i c t i n g statements, and areas of i n d i v i d u a l i n t e r e s t t o the respondent. The degree of i n f l u e n c e of d e n i a l on the f i n d i n g s was not p o s s i b l e to measure i n t h i s e x p l o r a t o r y d e s i g n . The s c a l a r measures of change and concern i n the i n t e r v i e w schedule showed l i t t l e v a r i a b i l i t y p o s s i b l y because the instrument was not a p p r o p r i a t e f o r the time and s i t u a t i o n of these p a r t i c i p a n t s . 47 The comments which i n d i c a t e d changes, concerns and a n x i e t y were recorded f o r i n d i v i d u a l cases. However, the degree of concern or amount of change c o u l d not be s y s t e m a t i c a l l y measured f o r a l l respondents. L i m i t a t i o n s of the i n t e r v i e w schedule w i l l be d i s c u s s e d i n f u r t h e r d e t a i l under the heading " S u i t a b i l i t y of the Instrument" i n the f i n a l chapter. 3. The Interview Schedule  I n t r o d u c t i o n S i x t e e n p a t i e n t s and f o u r t e e n primary c a r e - g i v e r s , a l l members of t h e i r immediate f a m i l i e s , were i n t e r v i e w e d i n t h i s study. A summary account of the f i r s t two s e c t i o n s of the Interview Schedule (Appendix E) ( i . e . General Information) and S e c t i o n I, w i l l be presented to i n t r o d u c e the d i s c u s s i o n of the f i n d i n g s . F o l l o w i n g t h i s account, the f i n d i n g s of the Interview Schedule b e g i n n i n g a t S e c t i o n I I w i l l be d i s c u s s e d under the theme headings o f the f i v e p o t e n t i a l socioeconomic changes and concerns i n the schedule: i . e . I I P l a c e of Residence; I I I T r a n s p o r t a t i o n and Work A c t i v i t i e s Outside the Home; IV Family Roles and R e s p o n s i b i l i t i e s ; V R e l a t i o n s h i p s with Family and F r i e n d s and, VI F e e l i n g s about S e l f . Reference to the number and k i n d of responses to i n d i v i d u a l q u e s t i o n s w i l l be noted a t the beginning of each s e c t i o n . In p r e s e n t i n g the f i n d i n g s the r e s e a r c h e r chose to compromise between i n d i v i d u a l i z i n g each case without becoming lengthy and showing the trends i n a l l cases. T h e r e f o r e , a t r e n d a n a l y s i s i s presented under the theme headings, i l l u s t r a t e d 48 by the s a l i e n t f e a t u r e s of each case and the r e s e a r c h e r ' s comments and impressions. 4. D e s c r i p t i v e Data General Information Age - The p a t i e n t s ' ages ranged from one p a t i e n t i n her t h i r t i e s , f o u r i n t h e i r f o r t i e s , nine i n the s i x t i e s , t o one p a t i e n t i n her s e v e n t i e s . L i v i n g S i t u a t i o n and Primary C a r e - G i v e r s T h i r t e e n p a t i e n t s were c u r r e n t l y m a r r i e d , l i v i n g with t h e i r husbands who were t h e i r primary c a r e - g i v e r s . The three other p a t i e n t s were widows who l i v e d alone. Two of the widows, Mrs. K. and Mrs. P. had s i s t e r s as t h e i r primary c a r e - g i v e r s , while the oth e r , Mrs. G. had her daughter as primary c a r e - g i v e r . Fourteen p a t i e n t s had c h i l d r e n ranging i n age from 12 to 46. F i v e p a t i e n t s had c h i l d r e n aged 12-22 l i v i n g a t home. Of the nine p a t i e n t s with c h i l d r e n not l i v i n g a t home, s i x p a t i e n t s had c h i l d r e n l i v i n g i n the Lower Mainland w h i l e three had c h i l d r e n l i v i n g o u t s i d e the p r o v i n c e . 5. D i a g n o s i s , Treatment and Previous Experience with I l l n e s s A. D i a g n o s i s T h i r t e e n p a t i e n t s found a lump i n t h e i r b r e a s t them-s e l v e s and eleven went t o the doct o r as soon as p o s s i b l e . The l a r g e number of s e l f - d i a g n o s e d p a t i e n t s c o u l d be a t t r i b u t e d to B r e a s t S e l f Examination E d u c a t i o n Programs. Mrs. K. waited three months u n t i l she r e t u r n e d home from a world t r i p and Mrs. C. waited over a year, hoping i t would d i s a p p e a r . The other three p a t i e n t s went to the d o c t o r f o r something e l s e , i . e . Mrs. B. f o r a r e g u l a r check-up, Mrs. F. f o r p h l e b i t i s , and Mrs. M. f o r a h e r n i a , a t which time the doctor suspected b r e a s t cancer. Seven p a t i e n t s experienced a biopsy and then a mastectomy a few days l a t e r . Nine p a t i e n t s r e c e i v e d the biopsy and mastectomy i n one o p e r a t i o n . Mrs. I . , one of the seven who had two o p e r a t i o n s , mentioned t h a t she a p p r e c i a t e d having a few days to prepare f o r the mastectomy a f t e r her biopsy. B. M e d i c a l Treatment A l l s i x t e e n p a t i e n t s experienced a m o d i f i e d r a d i c a l or simple mastectomy p r i o r to the i n t e r v i e w . Two of these p a t i e n t s , Mrs. E. and Mrs. P were a w a i t i n g h o s p i t a l i z a t i o n f o r the removal of the other b r e a s t . Eleven p a t i e n t s would be completing a schedule of f i f t e e n r a d i a t i o n treatments over a course of three weeks. By the time of the i n t e r v i e w , three p a t i e n t s , Mrs. I . , Mrs. L., and Mrs. N., had s t a r t e d r a d i a t i o n treatments and one, Mrs. J . had completed r a d i a t i o n treatments while the remaining seven had not s t a r t e d treatments. Two p a t i e n t s were a w a i t i n g r e s u l t s of medical t e s t s before knowing i f they r e q u i r e d i r r a d i a t i o n . Two p a t i e n t s , Mrs. D. and Mrs. A. would be p a r t i c i p a t i n g i n an adjuvant chemotherapy program a f t e r r a d i a t i o n treatments. One p a t i e n t , Mrs. M., had s t a r t e d a hormonal ( s t i l b e s t r o l ) therapy program f o r l i v e r metastases a t the time of the i n t e r v i e w . 50 C. P r e v i o u s Experiences w i t h  Cancer and Other I l l n e s s e s In response to the q u e s t i o n of t h i s s e c t i o n "Have you or your f a m i l y member had any p r e v i o u s experience with cancer?" f o u r p a t i e n t s had no p r e v i o u s experience w i t h cancer, while twelve p a t i e n t s knew one or more of t h e i r extended f a m i l y who had cancer. Four p a t i e n t s s a i d they had p r e v i o u s i l l n e s s e s . Mrs. M. has had a h e r n i a f o r f o u r years and a r r e s t e d glaucoma. Three years ago she had a mastectomy and now has diagnosed w i t h l i v e r m e t a s t a s i s . Mrs. J . had two p r e v i o u s major o p e r a t i o n s , one f o r a c o l l a p s e d womb. Mrs. P. had a thyroidectomy and Mrs. I. had a stomach u l c e r seven years ago. Twelve p a t i e n t s s a i d they had no p r e v i o u s i l l n e s s e s . Mrs. F. had a s e r i o u s c h r o n i c p h l e b i t i s c o n d i t i o n but d i d not c o n s i d e r t h i s a p r e v i o u s i l l n e s s . 6 . Place of Residence The f o l l o w i n g i s an account of the responses to S e c t i o n I I of the I n t e r v i e w Schedule on "place of r e s i d e n c e " . 1. Four p a t i e n t s l i v e d i n apartments. Two of these p a t i e n t s were widows who l i v e d alone, and two l i v e d with t h e i r husbands i n s e n i o r c i t i z e n r e t i r e m e n t homes. The remaining twelve p a t i e n t s were homeowners. The s i x t e e n p a t i e n t s i n t e r v i e w e d l i v e d i n the f o l l o w i n g communities: Vancouver, North Vancouver, Burnaby, Richmond, New Westminster, Coquitlam, Maple Ridge, D e l t a , Langley, Abbotsford'and Mount Leyman. 51 2. During the past two years have you changed your address? Yes: 14 No: 2 3. Since you found out you had b r e a s t cancer have you changed your address: Yes: 0 No: 16 Have you made pl a n s t o do so? Yes: 2 No: 14 I f "Yes" was your d e c i s i o n to move i n f l u e n c e d i n any way by your d i s c o v e r y t h a t you have b r e a s t cancer? Yes: 1 No: 15 Comments In response to the q u e s t i o n "How long have you l i v e d i n t h i s community?" f o u r t e e n p a t i e n t s had l i v e d i n the same community from 12 to 46 ye a r s . These p a t i e n t s had no c u r r e n t plans to move and the mastectomy d i d not a f f e c t plans t o change p l a c e of r e s i d e n c e . One p a t i e n t , Mrs. K., was p l a n n i n g to change her p l a c e of r e s i d e n c e because of her mastectomy. Mrs. K. had been t r a v e l l i n g f o r two years (see Biography) and had not completely moved i n t o her apartment. She wondered i f she would be b e t t e r i n an apartment wi t h an e l e v a t o r as she had concerns about her f u t u r e h e a l t h and her energy l e v e l . Mrs. K. knew she had a l a t e r staged c a n c e r , ( i . e . Stage III) and was anxious about whether "treatment would work". She s p e c u l a t e d whether she should stay i n her own apartment or move i n t o a s e n i o r c i t i z e n s ' complex with communal d i n i n g h a l l and r e c r e a t i o n a l f a c i l i t i e s . Mrs. K. was p r e s e n t l y very anxious about s t a y i n g alone i n her apartment. Three other 52 p a t i e n t s had concerns about changing p l a c e of r e s i d e n c e . Mrs. 0. was p l a n n i n g to move back to the Maritimes where she f e l t more at home and c o u l d l i v e a l e s s s t r e s s f u l l i f e . Mrs. C. was s e l l i n g t h e i r home to move back to her o l d neighbourhood i n the same community where a l l her f r i e n d s l i v e d . Mrs. G. wants to continue to l i v e alone i n her own house and opposes her daughter who f e e l s she would manage more e a s i l y i n a s e n i o r c i t i z e n s ' h i g h r i s e . Although Mrs. 0., Mrs. C. and Mrs. G. d i d not connect these d e c i s i o n s about p l a c e of r e s i d e n c e to t h e i r mastectomy, the r e s e a r c h e r s p e c u l a t e s t h a t these t h r e e p a t i e n t s are moving towards a g r e a t e r s t a b i l i t y and s e c u r i t y i n t h e i r p l a c e of r e s i d e n c e to compensate f o r other changing areas i n h e a l t h . 7. Work A c t i v i t i e s Outside the Home and T r a n s p o r t a t i o n  A. Work A c t i v i t i e s The f o l l o w i n g i s an account o f p a t i e n t s ' responses to the s e c t i o n on "work a c t i v i t i e s o u t s i d e the home" i n the i n t e r v i e w schedule: A. Are you employed o u t s i d e the home? Yes: 8 No: 8 B. Do you do v o l u n t e e r work? Yes: 2 No: 14 Do you a n t i c i p a t e your treatment w i l l a f f e c t your v o l u n t e e r work? Yes: 0 No: 2 I f employed o u t s i d e the home: 1) What i s your job? D e s c r i p t i o n i n summary account. 2) For how long have you worked at t h i s job? Years: 5 - 1 9 3) Are you working now? Yes: 0 No: 8 a) I f "No" do you a n t i c i p a t e r e t u r n i n g to work? Yes: 8 No: 0 b) I f "No" does t h i s have anything to do w i t h : i ) Your pres e n t i l l n e s s : Yes: 0 No: 0 NA 8 i i ) Other r e c e n t or c u r r e n t i l l n e s s e s of your or your f a m i l y members? Yes: 0 No: 8 i i i ) P r e v i o u s experiences with cancer? Yes: 0 No: 8 No: N i l 4. I f you are c u r r e n t l y working or a n t i c i p a t e r e t u r n i n g to work: 1) W i l l t here be a change i n hours, job r e s p o n s i b i l i t i e s , work c o n d i t i o n s or income? Yes: 0 No: 8 a) I f "Yes" c o u l d you say more about how t h i s change may come about? i ) Has anyone i n d i c a t e d to you there may be a change? Yes: 0 No: 8 i i ) Do you a n t i c i p a t e you w i l l f e e l w e l l enough to continue your present job? Yes: 8 No: 0 i i i ) Do you f e e l these changes are i n any way a r e s u l t of your i l l n e s s ? Yes: 0 No: 8 Comments In response t o the q u e s t i o n "Are you employed o u t s i d e the home?"eight p a t i e n t s responded "Yes". A l l e i g h t p a t i e n t s had t h e i r jobs over f i v e y e ars. The jobs are as f o l l o w s : a p a r t - t i m e h o s p i t a l p a t i e n t - e s c o r t ; a desk c l e r k i n a h o t e l ; R.N. i n a p r i v a t e h o s p i t a l ; a bank department head; d i e t i c i a n i n a p r i v a t e h o s p i t a l ; a teacher; head c a s h i e r i n department s t o r e ; and a nurse's a i d e . Two p a t i e n t s were i n v o l v e d i n v o l u n t e e r work which d i d not change because of the mastectomy. A l l e i g h t p a t i e n t s who were employed were on s i c k leave and were e x p e r i e n c i n g a change i n l i f e s t y l e from going to work every day to s t a y i n g a t home. A l l e i g h t p a t i e n t s intended on r e t u r n i n g to work with no a n t i c i p a t e d changes i n work hours, r e s p o n s i b i l i t i e s , work c o n d i t i o n s or income. None of the e i g h t p a t i e n t s knew when they would be r e t u r n e d to work which depended on recovery a f t e r treatments. A l l e i g h t p a t i e n t s showed some concern and a n x i e t y about knowing when they should r e t u r n to work and 55 questioned r e s e a r c h e r on the e f f e c t s of treatment so they might be able to estimate time of r e t u r n f o r t h e i r employers. T h i s concern about r e t u r n i n g to work seemed to depend on acceptance of the s i c k r o l e over the work r o l e , and on t h e i r economic s i t u a t i o n . Mrs. G. was the o n l y p a t i e n t who f e l t she had t o work to support h e r s e l f , and keep her own house. She s a i d "OAP j u s t i s n ' t enough." Mrs. G. was w a i t i n g to f e e l w e l l enough to s t a r t her new job i n a bank which employed people over 65. However, her daughter was opposed to t h i s job as she f e l t i t was too s t r e s s f u l now and suggested her mother have "some e a s i e r " j o b. Mrs. G. wanted to remain i n the work which she knew and d i d not want a change. She was most concerned about her appearance i n her new job and was d e c i d i n g to wait f o r a good p r o s t h e s i s b e f o r e r e t u r n i n g to work. Mrs. E. and Mrs. H. both worked to supplement the f a m i l y income but f e l t some ambivalence about keeping the same job. Mrs. E. who was almost a t r e t i r e m e n t age (61) was i n v o l v e d i n pushing heavy h o s p i t a l beds a t work. She was d e c i d i n g whether she should look f o r a l i g h t e r job i n the same h o s p i t a l as she l i k e d working t h e r e . Mrs. H. was a f u l l - t i m e nurse and wondered i f she c o u l d work l e s s hours i n order to reduce the s t r e s s of her job. Mrs. H. was w o r r i e d t h a t the s t r e s s of working might j e o p a r d i z e her h e a l t h . Three p a t i e n t s , Mrs. E., Mrs. F. and Mrs. I, had d i f f i c u l t y a c c e p t i n g the s i c k r o l e over the work r o l e . These 56 p a t i e n t s had a l s o never been s e r i o u s l y i l l b e fore which may be a c o n t r i b u t i n g f a c t o r t o d i f f i c u l t y i n a d j u s t i n g . Mrs. F. went t o work a few hours each day to p l a n menues, a g a i n s t her d o c t o r ' s express wishes t o keep her o f f her f e e t f o r a p h l e b i t i s c o n d i t i o n . Her husband s a i d "I can't keep her a t home!" Mrs. F. s a i d "I j u s t can't s i t a t home a l l day. There are t h i n g s to be done at work." Her husband e x p l a i n e d t h a t "she d i d n ' t have to go to work but she's very h i g h strung and needs to be doing something." Mrs. F. i n d i c a t e d to r e s e a r c h e r t h a t going t o work made her f e e l t h a t t h i n g s were g e t t i n g back t o normal. Mrs. E . t a l k e d about her change i n l i f e s t y l e s i n c e on s i c k l e a v e . She s a i d "I f e e l stranded", " l i k e an i n v a l i d , you know?" She a l s o f e l t cut o f f from her f r i e n d s a t work. Mrs. I . , a married teacher w i t h no c h i l d r e n , i n her 30's, has taught s c h o o l f u l l - t i m e f o r the l a s t s i x t e e n y e a r s . The d i a g n o s i s brought t o Mrs. I . a sudden change i n l i f e s t y l e which a c c o r d i n g to d o c t o r ' s orders w i l l be prolonged u n t i l September's new sch o o l term. T h i s change i n l i f e s t y l e from "working" t o "housewife" i s d i f f i c u l t f o r Mrs. I. to accept and says t h i s change has a f f e c t e d her own work image of h e r s e l f as a "healthy e n e r g e t i c t e a c h e r " . Mrs. J . , on the other hand, took the change from work r o l e t o s i c k r o l e more i n s t r i d e . She has had two other o p e r a t i o n s b e f o r e which may c o n t r i b u t e to her ease i n a d j u s t i n g . She s a i d "I'm r e a l l y e n j o y i n g my time a t home now, they can j u s t wait f o r me a t work." Although t h i s statement sounds nonchalent, Mrs. J.'s tone seemed to c o n f i r m her a n x i e t y about when she c o u l d r e t u r n to work. B. T r a n s p o r t a t i o n The f o l l o w i n g i s an account of p a t i e n t s ' responses t o the s e c t i o n on t r a n s p o r t a t i o n i n the q u e s t i o n n a i r e : Do you d r i v e a car? Yes: 7 No: 9 a) I f "Yes" are you able to d r i v e now? Yes: 7 No: 0 b) I f "No" does someone d r i v e you? Yes: 9 i ) I f "Yes" who? Bus or husband or f r i e n d s c) What t r a n s p o r t a t i o n do you have to your treatments at the Maxwell Evans C l i n i c ? Husband: 10 Volunteer D r i v e r : 4 Comments In response to the q u e s t i o n "Do you d r i v e a c a r ? " seven of the p a t i e n t s responded "Yes". The o p e r a t i o n d i d not change t h e i r a b i l i t y t o d r i v e nor d e s i r e "to go out". The other nine p a t i e n t s who d i d not d r i v e , e i t h e r took a bus or o t h e r s drove them a week a f t e r the o p e r a t i o n . C u r t a i l m e n t s on "going out" were u s u a l l y connected to self-image r a t h e r than l a c k of t r a n s p o r t a t i o n . However, the f i n d i n g s show t h a t the four p a t i e n t s who mentioned embarrassment i n going out s i n c e the o p e r a t i o n , 58 i . e . Mrs. E., Mrs. G., Mrs. L. and Mrs. M., d i d not d r i v e a c a r . One may sp e c u l a t e t h a t p a t i e n t s may be more embarrassed by u s i n g p u b l i c t r a n s p o r t a t i o n and walking than by u s i n g t h e i r own c a r , or perhaps these four p a t i e n t s are n a t u r a l l y more t i m i d i n d i v i d u a l s . 8. Family Roles and R e s p o n s i b i l i t i e s Note: S e c t i o n IV i s a l s o The Primary Care-Giver Interview  Schedule. T h e r e f o r e , the q u e s t i o n s i n S e c t i o n IV, Family Roles and R e s p o n s i b i l i t i e s , were asked of 16 p a t i e n t s and 14 primary c a r e - g i v e r s . T h i s s e c t i o n i s d i v i d e d i n t o three p a r t s : A. Main Concerns of P a t i e n t s and Primary Care-Givers B. P r a c t i c a l Changes i n D a i l y A c t i v i t i e s , Family Roles and R e s p o n s i b i l i t i e s C. S e r v i c e s Received and S e r v i c e s Requested There were some commonalities i n the p a t i e n t s ' and f a m i l y members' responses t o the q u e s t i o n s "In ge n e r a l c o u l d you t e l l me the main concerns you and your f a m i l y have a t t h i s time?" and "What are the most important changes i f any which you have n o t i c e d i n your f a m i l y ? " T h e r e f o r e , as t h i s data may i n d i c a t e d i f f e r e n c e s i n the p a t i e n t ' s and her f a m i l y ' s concerns as w e l l as i n d i v i d u a l needs and t i m i n g of support s e r v i c e s , a l l i n d i v i d u a l p a t i e n t responses and t h e i r primary c a r e - g i v e r s ' responses to these two q u e s t i o n s w i l l be noted. T h i s l i s t i n g w i l l be f o l l o w e d by a summary and comparison of p a t i e n t s ' and primary c a r e - g i v e r s ' major concerns and p e r c e p t i o n s of change. 59 A. Main Concerns of P a t i e n t s and T h e i r  Primary C a r e - G i v e r s The f o l l o w i n g i s a l i s t i n g of p a t i e n t s ' and t h e i r primary c a r e - g i v e r s ' responses t o the q u e s t i o n s i n S e c t i o n A of i n t e r v i e w schedule under the heading IV, Family Roles and R e s p o n s i b i l i t i e s : 1. In g e n e r a l c o u l d you t e l l me the main concerns you and your f a m i l y have a t t h i s time s i n c e you found out (or your spouse, daughter, mother) has b r e a s t cancer? 2. Since the d i a g n o s i s what are the most important changes, i f any, you have n o t i c e d i n your f a m i l y ? (1) Mrs. A. - Stage I I P a t i e n t 1. Major concerns: "No Disneyland t r i p w ith daughter. C a n c e l l e d . 2. Major changes: "None. Shock at beginning, u n n a t u r a l i f i t were not?" No i n t e r v i e w w i t h husband, the primary c a r e - g i v e r . (2) Mrs. B. - Stage I I P a t i e n t 1. Major concerns: "Not a darn t h i n g , no sense, no f e e l i n g . " 2. Major changes: "No". Primary c a r e - g i v e r : Husband 60 1. Major concerns: "This h i t us l i k e a time bomb, my w i f e ' s h e a l t h . " 2. Major changes: "None, c a r r y on p r e t t y much as b e f o r e . " Mrs. C. - Stage I P a t i e n t 1. Major concerns: 2. Major changes: Primary c a r e - g i v e r : Husband 1. Major concerns: 2. Major changes: "Hard to answer-husband and c h i l d r e n have been wonderful, more f r i e n d s now." "Daughter gave up moving i n t o own apartment, 18 year o l d so n a t u r a l l y l a z y , but t r y i n g now to h e l p . " "Her g e n e r a l w e l l - b e i n g . " "More togetherness, w i f e gets down a b i t , we t r y to stop those f e e l i n g s . " Mrs. D. - Stage I P a t i e n t 1. Major concerns; "None" 2. Major changes: "None" Primary c a r e - g i v e r : Husband No i n t e r v i e w 61 (5) Mrs. E. - Stage I I P a t i e n t 1. Major concerns: 2. Major changes: Primary c a r e - g i v e r : 1. Major concerns: 2. Major changes: Husband "How long do you wait f o r the c o b a l t treatments? How long b e f o r e treatments are over? Do not sle e p w e l l . W a i t i n g a l s o f o r p r o s t h e s i s f e e l i n g l i k e i n v a l i d . " "Waiting". "Wife w o r r i e d and on edge, u p t i g h t , you know." "Wife r e a l l y upset three days ago, surgeon drew f l u i d from b r e a s t , now not so w o r r i e d . " (6) Mrs. F. - Stage I P a t i e n t 1. Major concerns: 2. Major changes: Primary c a r e - g i v e r : Husband 1. Major concerns: 2. Major changes: "In our age group not as many t h i n g s are going on; when you have something l i k e t h i s you f i n d out how much your f a m i l y t h i n k s of you." "Family shows concern." "At f i r s t a n x i e t y , t h i s i s a c l o s e f a m i l y then you do e v e r y t h i n g you can, g r a t e f u l t h a t the doct o r ' s found i t e a r l y . " "Family c l o s e r , d a u g h t e r - i n -law cooks every meal next door." 62 (7) Mrs. G. - Stage I P a t i e n t 1. Major concerns: Major changes 'Spoiled h o l i d a y and when can I r e t u r n t o work? I f you cannot support y o u r s e l f sooner or l a t e r you have to s e l l the house!" 'Family p r e t t y scared; my b r o t h e r i n S a r d i s very w o r r i e d . " Primary c a r e - g i v e r 1. Major concerns 2. Major changes: Daughter 'Main concern i s whether I w i l l have i t . " 'Shocked, educated enough t h a t aware i t i s not f a t a l , o p t i m i s t i c . " (8) Mrs. H. - Stage I P a t i e n t 1. Major concerns: 2. Major changes: Primary c a r e - g i v e r : Husband 1. Major concerns: "Doubt i n your mind, s t i l l u n r e a l , i t does not seem l i k e i t i s happening to me. Before the o p e r a t i o n , I thought I would go out of my mind with the i d e a of having cancer. Better- now." "My husband i s h e l p i n g more than u s u a l . " "Shock a t the beginning, then you t h i n k of w i f e ' s comfort, w e l l - b e i n g and r e h a b i l i t a t i o n . " 2. Major changes: "Close f a m i l y now c l o s e r s t i l l , more i n t e n s e . " 63 (9) Mrs. I. - Stage I P a t i e n t 1. Major concerns: 2. Major changes: Primary c a r e - g i v e r : Husband 1. Major concerns: 2. Major changes: "Long term s u r v i v a l , know-i n g the extent of the cancer, f u t u r e l i f e . " "None" "My wif e g e t t i n g her head together - a d j u s t i n g to new shock." "None" (10) Mrs. J . - Stage 1 P a t i e n t 1. Major concerns: "Recovery from s i c k n e s s , hardest on youngest daughter who d i d more cooking and shopping, shock a t b e g i n -n i n g , c a r r y i n g on now." 2. Major changes: " C l o s e r f a m i l y . " Primary c a r e - g i v e r : Family 1. Major concerns: "Did they get i t a l l out? 2. Major changes: " C l o s e r f a m i l y now." 64 (11) Mrs. K. - Stage I I I P a t i e n t 1. Major concerns: 2. Major changes: Primary c a r e - g i v e r : S i s t e r 1. Major concerns: 2. Major changes: "Whether treatment w i l l be t o t a l l y e f f e c t i v e , t h a n k f u l f o r s i s t e r would have found t h i s time very d i f f i c u l t without her." " D i s r u p t i o n to s i s t e r ' s l i f e , l e a v i n g husband who i s not w e l l . Nuisance of c l o t h e s because of tenderness." "Shock s t i l l , s i s t e r always h e a l t h y and a c t i v e ; d i f f i c u l t to grasp." "I w i l l extend v i s i t u n t i l s i s t e r s t a r t s treatments." (12) Mrs. L. - Stage I P a t i e n t 1. Major concerns: 2. Major changes: Primary c a r e - g i v e r : 1. Major concerns: 2. Major changes: "The e f f e c t s of treatment g e t t i n g p r o s t h e s i s and g e t t i n g back to normal." "None" Husband "To show l o v e , d e v o t i o n and togetherness." "Always had a good f a m i l y l i f e and w i l l remain t h a t way. " 65 (13) Mrs. M. - Stage IV P a t i e n t 1. Major concerns: "None" 2. Major changes: "None" Primary c a r e - g i v e r : Husband 1. Major concerns: 2. Major changes: "Shock to begin w i t h . We have become w e l l a d j u s t e d , w i f e a d j u s t e d and f e e l s her l i f e complete. I know th e r e i s no cure f o r cancer of the l i v e r . There i s no reason why you l i v e a c e r t a i n time." " D i f f i c u l t times ahead, some i d e a what i s i n v o l v e d from d o c t o r s . I am going to make e v e r y t h i n g as agreeable and easy as p o s s i b l e f o r my w i f e . " (14) Mrs. N. - Stage I P a t i e n t 1. Major concerns: 2. Major changes: Primary c a r e - g i v e r : 1. Major concerns: "Hope treatments w i l l work, not depressed, not worrying." "None. Family a b i t c l o s e r . " Daughter (Husband Norwegian and o f t e n 'confused' a c c o r d i n g to p a t i e n t ) "Have they got i t a l l ? I have t a l k e d t o a l l the d o c t o r s . " Major changes: "Change i n mother's h e a l t h . 66 (15) Mrs. O. - Stage I P a t i e n t 1. Major concerns: 2. Major changes: Primary c a r e - g i v e r : 1. Major concerns: "I hope my t e s t s are O.K." "None" Husband "I b e l i e v e i n d o c t o r s , had a broken back h a l f my stomach out. My son i s a d o c t o r . A l l a matter of p o s i t i v e a t t i t u d e . R a d i a t i o n i s not good f o r you and i t i s not necessary." 2. Major changes "None" (16) Mrs. P. - Stage I P a t i e n t 1. Major concerns: 2. Major changes: Primary c a r e - g i v e r : S i s t e r 1. Major concerns: "Going as s t r o n g as ever, walking more, wonder i f I should stay with my s i s t e r again a f t e r o p e r a t i o n ? She i s a very busy, very busy woman." "No changes a t a l l . " "Want her to get the best of treatment." 2. Major changes: "None" 67 Comments Some commonalities were found i n primary c a r e - g i v e r s responses t o the q u e s t i o n "What are your g r e a t e s t concerns?" T h i r t e e n primary c a r e - g i v e r s mentioned the p a t i e n t s ' w e l l - b e i n g . E i g h t primary c a r e - g i v e r s made a r e f e r e n c e t o t h e i r new r o l e i n h e l p i n g the p a t i e n t . Mrs. G.'s daughter was an ex c e p t i o n as she was most concerned about her own chances o f g e t t i n g cancer. F i v e primary c a r e - g i v e r s mentioned the shock of f i n d i n g out the p a t i e n t had cancer. In response t o the q u e s t i o n "What are the most important changes?" f o u r primary c a r e - g i v e r s mentioned the f a m i l y was " c l o s e r " . Three primary c a r e - g i v e r s were concerned with the p a t i e n t ' s a n x i e t y or d e p r e s s i o n . Mr. F. was concerned about h i s w i f e ' s a n x i e t y , i . e . her going t o work when she d i d not have t o go and her s i t t i n g up a t 3 a.m. doing crossword p u z z l e s . Mr. I.'s concern was t h a t h i s w i f e "get her head t o g e t h e r " . Mr. C.'s concern was about h i s wif e " g e t t i n g down" and h i s t r y i n g t o "stop those f e e l i n g s " . Mr. M. on the oth e r hand, recounted how amazingly w e l l h i s w i f e was h a n d l i n g t h i s s i t u a t i o n and seemed t o c o n s i d e r her an i n s p i r a t i o n i n d e a l i n g w i t h "tough times ahead". A l l 14 primary c a r e - g i v e r s s a i d t h e r e were no major changes i n f a m i l y a c t i v i t i e s , r o l e s and r e s p o n s i b i l i t i e s . The f o l l o w i n g commonalities were found i n p a t i e n t ' s responses t o "What are your g r e a t e s t concerns s i n c e you found out you have cancer?": 68 Seven p a t i e n t s were concerned about t h e i r treatments and r e h a b i l i t a t i o n ; F i v e were concerned about f a m i l y r o l e s and r e s p o n s i b i l i t i e s and r e l a t i o n s h i p s w i t h f a m i l y and f r i e n d s ; One had socioeconomic concerns; and Three s a i d they had no concerns. In response t o the q u e s t i o n "What are the most important changes i f any you have n o t i c e d i n your f a m i l y ? " these commonalities were found; Three p a t i e n t s s a i d f a m i l y r o l e s and r e s p o n s i b i l i t i e s had changed; Two p a t i e n t s mentioned t h e i r f a m i l i e s were showing concern; Two p a t i e n t s s a i d t h e i r f a m i l y was c l o s e r ; and Nine p a t i e n t s s a i d t h e r e were no changes. A comparison of the concerns and changes noted  by the p a t i e n t and those noted by her f a m i l y P a t i e n t concerns seem to be short-term f u t u r e o r i e n t e d f o c u s s i n g on a n t i c i p a t i o n o f treatment, e f f e c t i v e n e s s and r e t u r n i n g to normal d a i l y a c t i v i t i e s . Family concerns, on the other hand, seem t o be long-term f u t u r e o r i e n t e d , f o c u s s i n g on t h e i r new r o l e i n h e l p i n g the p a t i e n t f u l l y r e c o v e r , and on the p a t i e n t ' s long-term p r o g n o s i s . 69 P r a c t i c a l Changes i n D a i l y A c t i v i t i e s , Family Roles and R e s p o n s i b i l i t i e s The f o l l o w i n g i s an account of p a t i e n t s ' and primary c a r e - g i v e r s ' responses t o the t a b l e and q u e s t i o n s i n the i n t e r v i e w schedule which would i n d i c a t e a change i n f a m i l y r e s p o n s i b i l i t i e s . The p a t i e n t and her f a m i l y member response to the t a b l e was i d e n t i c a l i n every case. Table I I Please i n d i c a t e the r e s p o n s i b i l i t i e s of each f a m i l y member and o t h e r s b e f o r e the d i a g n o s i s . Note: I f p a t i e n t and primary c a r e - g i v e r both d i d same job, both were counted. Therefore t a b l e s do not add up to 16 f o r each r e s p o n s i b i l i t y but r a t h e r to how many were i n v o l v e d i n each r e s p o n s i b i l i t y f o r a l l 16 households. TABLE I I : BEFORE DIAGNOSIS: P a t i e n t Primary C h i l d r e n Neigh- T o t a l s Care- bours Giver 1. E a r n i n g income 8 10 - 18 2. S i t t i n g down to pay b i l l s 9 7 - 16 3. Washing d i s h e s 12 6 1 19 4. Meals 16 2 18 5. House c l e a n i n g 16 2 - 18 6. Shopping 10 8 - 18 (Groceries) (Supplies) Yard work 8 10 2 1 21 V o l u n t e e r work 2 2 - 4 Making arrange-ments f o r s o c i a l v i s i t s f o r the f a m i l y 7 8 9.  12 2 - I 4 TOTALS "93 49 3 I 146 70 Is there some area of change i n r e s p o n s i b i l i t i e s which i s not on t h i s t a b l e ? Yes: 0 No: 16 I f "Yes" p l e a s e add i t to the t a b l e as "Other". Table I I I Please i n d i c a t e r e s p o n s i b i l i t i e s of each f a m i l y member and o t h e r s a f t e r the mastectomy d u r i n g the second week home from the h o s p i t a l . TABLE I I I : AFTER DIAGNOSIS: P a t i e n t Primary C h i l d r e n Neigh- T o t a l s Care- bours G i v e r s 1. E a r n i n g income 8 10 - 18 2. S i t t i n g down to 9 7 - 16 pay b i l l s 3. Washing d i s h e s 7 10 2 19 4. Meals 8 7 3 19 5. House c l e a n i n g 6 9 3 18 6. Shopping 5 10 2 1 18 (Groceries) (Supplies) 7. Yard Work 6 11 3 1 21 8. Volunteer work 2 2 - 4 9. Making arrange- 12 2 14 ments f o r s o c i a l v i s i t s f o r the f a m i l y TOTALS 63 67 13 2 146 3. Do you f e e l you w i l l be able to c a r r y on your r e g u l a r household r e s p o n s i b i l i t i e s and chores? The same as be f o r e the d i a g n o s i s ? 15 p a t i e n t s 14 primary c a r e - g i v e r s 71 Nearly as w e l l ? 1 p a t i e n t 0 primary c a r e - g i v e r s Not as w e l l ? 0 p a t i e n t 0 primary c a r e - g i v e r s 4. I f changes were noted i n the above t a b l e : a) How concerned are you r i g h t now about each of these changes? Not a t a l l ? 16 p a t i e n t s 12 primary c a r e - g i v e r s Somewhat? 0 p a t i e n t s 1 primary c a r e - g i v e r A g r e a t deal? 0 p a t i e n t s 0 primary c a r e - g i v e r s b) Are you concerned about the above r e s p o n s i b i l i t i e s ? More: 0 The same: 16 p a t i e n t s and 14 primary c a r e - g i v e r s or Less: 0 than b e f o r e your w i f e ' s , e t c . (or your) d i a g n o s i s ? I f more i s t h i s concern connected to your w i f e ' s , e t c . (or your) i l l n e s s ? Yes: No: N.A. A l l respondents 5. Could you t e l l me which of the f a m i l y changes we have t a l k e d about i s of most concern to you now? Next? E t c . A l l respondents mentioned t h e i r p e r c e p t i o n s of change i n P a r t A of S e c t i o n IV. Comments During the f i r s t two weeks a f t e r the mastectomy, f a m i l i e s r e - o r g a n i z e d r e s p o n s i b i l i t i e s away from the p a t i e n t towards husbands and/or c h i l d r e n , s i s t e r s , f r i e n d s or neighbours By the time o f the i n t e r v i e w , u s u a l l y two to f o u r weeks a f t e r 72 the mastectomy the f a m i l y s a i d t h a t r e s p o n s i b i l i t i e s were r e t u r n i n g to normal. P a t i e n t s L i v i n g with t h e i r Husband  and C h i l d r e n . F i v e p a t i e n t s l i v e d w i t h t h e i r husbands and c h i l d r e n . Four husbands and c h i l d r e n s a i d they were doing more i n household chores a t the time of the i n t e r v i e w . Mrs. A. denied there were any changes i n f a m i l y r e s p o n s i b i l i t i e s . However, she l a t e r mentioned her daughter was h e l p i n g w i t h c l e a n i n g . Mrs. C ' s daughter postponed plans to leave home so she c o u l d look a f t e r the household f o r a few weeks a f t e r her mother's o p e r a t i o n . Mr. C. was doing a l l the c l e a n i n g i n p r e p a r a t i o n f o r s e l l i n g the house and t h e i r son was doing yard work and " t r y i n g to h e l p " which amazed Mrs. C. Mrs. C. s l e p t i n i n the mornings and took an a f t e r n o o n nap. At the time of the i n t e r v i e w , she was s t i l l r e c o v e r i n g from the o p e r a t i o n of two weeks ago, but was s t a r t i n g to cook the meals. Couples Seven p a t i e n t s l i v e d w i t h t h e i r husbands who were t h e i r primary c a r e - g i v e r s . Four p a t i e n t s n o t i c e d a change i n t h e i r husbands h e l p i n g w i t h c l e a n i n g while three p a t i e n t s n o t i c e d no change. Mr. L. cooked and washed the d i s h e s f o r the evening meal. Mrs. F. traded meals f o r d i s h washing with her daughter-in-law next door. Mr. N. kept house f o r h i m s e l f while h i s w i f e was s t a y i n g with her daughter d u r i n g treatments. Couples tended to n o t i c e l e s s change than f a m i l i e s with c h i l d r e n i n household r e s p o n s i b i l i t i e s , p o s s i b l y because there i s l e s s to do i n house-holds of two people. The Widows The three widows l i v e d alone, w i t h primary c a r e - g i v e r s l i v i n g w i t h t h e i r own f a m i l i e s . Mrs. K. stayed w i t h her f r i e n d f o r two weeks a f t e r her o p e r a t i o n u n t i l her s i s t e r a r r i v e d from the I n t e r i o r , a t which time she moved back to her own apartment. Mrs. P. stayed w i t h her s i s t e r who l i v e d nearby f o r two weeks and then r e t u r n e d to her own apartment. Mrs. G. was v i s i t e d each day by her daughter who cooked some of her meals and d i d the shopping. In response to the q u e s t i o n " W i l l you be able to c a r r y on your r e g u l a r household r e s p o n s i b i l i t i e s and chores?" 15 p a t i e n t s and a l l 14 primary c a r e - g i v e r s responded "the same as be f o r e d i a g n o s i s " . One p a t i e n t , Mrs. H., s a i d " n e a r l y as w e l l " and seemed to the r e s e a r c h e r to be an immaculate house-keeper. A l l p a t i e n t s and primary c a r e - g i v e r s responded "Not a t a l l " to the q u e s t i o n "How concerned are you r i g h t now about changes i n f a m i l y r o l e s and r e s p o n s i b i l i t i e s ? " The p a t i e n t s ' and f a m i l y members' response to the t a b l e n o t i n g changes i n r e s p o n s i b i l i t i e s c o n s i s t e n t l y j i b e d . T h e r e f o r e , p a t i e n t and primary c a r e - g i v e r are aware of the same changes i n f a m i l y r e p o n s i b i l i t i e s . F i f t e e n p a t i e n t s and f o u r t e e n primary c a r e - g i v e r s s a i d they had no major concerns about changes i n t h e i r d a i l y p r a c t i c a l f a m i l y r e s p o n s i b i l i t i e s because they f e l t changes were temporary. One respondent, Mrs. K.'s s i s t e r , had a major concern about p r a c t i c a l household r e s p o n s i b i l i t i e s . She w o r r i e d about whether Mrs. K. c o u l d manage on her own d u r i n g treatments when she r e t u r n e d to the I n t e r i o r t o nurse her s i c k husband. Although both primary c a r e - g i v e r and p a t i e n t s ' responses would i n d i c a t e no change i n r o l e and r e s p o n s i b i l i t i e s , the d e t a i l s of f a m i l y l i f e g i v e n to the r e s e a r c h e r i n d i c a t e d c o n s i d e r a b l e changes i n r e s p o n s i b i l i t i e s taken by other f a m i l y members. T h i s d i s c r e p a n c y may i n d i c a t e d e n i a l as a means of coping w i t h change, o r may be a way of keeping the i n t e r v i e w away from a p a i n f u l d i s c u s s i o n of p r i v a t e f a m i l y concerns. C. S e r v i c e s Requested and S e r v i c e s Received The f o l l o w i n g i s an account of p a t i e n t s ' and primary c a r e - g i v e r s ' responses to q u e s t i o n s on s e r v i c e s r e c e i v e d and s e r v i c e s requested: 6. Have you or your f a m i l y had any of the f o l l o w i n g s e r v i c e s ( i f "Yes" name the s e r v i c e , who p r o v i d e d t h i s s e r v i c e and when). 75 T r a n s p o r t a t i o n 4 0 Household help 0 0 Information s e r v i c e s 3 0 C o u n s e l l i n g : I n d i v i d u a l 0 0 Family 0 0 Groups with other p a t i e n t s 0 0 and f a m i l i e s Other VON Home Nursing 3 0 Mastectomy v o l u n - 16 0 t e e r s Did you r e c e i v e these s e r v i c e s when you wanted them? P a t i e n t : Yes 16 No 0 Primary C a r e - G i v e r : 0 0 Would any of the above s e r v i c e s be h e l p f u l to you now? P a t i e n t : 6 10 Primary C a r e - G i v e r : 1 13 I f "Yes" which s e r v i c e would be most h e l p f u l ? Next? E t c ? P a t i e n t s : 1. C l i n i c t r a n s p o r t a t i o n s e r v i c e 2 2. E a r l i e r n o t i f i c a t i o n about 2 treatment 3. P r e - o p e r a t i v e c o u n s e l l i n g 2 4. Share experiences with o t h e r 4 p a t i e n t s Primary C a r e - G i v e r s : 1. Share experience w i t h other 1 primary c a r e - g i v e r Comments In response t o the q u e s t i o n "What s e r v i c e s have you r e c e i v e d ? a l l s i x t e e n p a t i e n t s s a i d they were v i s i t e d by a Mastectomy V o l u n t e e r while they were i n h o s p i t a l and found t h i s s e r v i c e very h e l p f u l . Four p a t i e n t s i n t e r v i e w e d were r e c e i v i n g C l i n i c ' s t r a n s p o r t a t i o n s e r v i c e and were very g r a t e f u l f o r t h i s . Three p a t i e n t s r e c e i v e d medical i n f o r m a t i o n about t h e i r d o c t o r s a t the C l i n i c which they found very h e l p f u l . Three p a t i e n t s s a i d they r e c e i v e d VON home n u r s i n g . To the q u e s t i o n "Did you r e c e i v e these s e r v i c e s when you wanted them?", a l l s i x t e e n p a t i e n t s responded "Yes". In response to the q u e s t i o n "What s e r v i c e s would be h e l p f u l ? " ten p a t i e n t s responded "None". Mrs. A. and Mrs. B. were c o n s i d e r i n g u s i n g the T r a n s p o r t a t i o n s e r v i c e . Mrs. E. and Mrs. K. wished the C l i n i c would l e t them know e a r l i e r when treatments would s t a r t because they f e l t they had to stay at home to wait f o r the telephone c a l l , and c o u l d not make any s h o r t term p l a n s . Mrs. D. and Mrs. H. both mentioned the most s t r e s s f u l time f o r them was before the mastectomy and they would have a p p r e c i a t e d p r e - o p e r a t i v e c o u n s e l l i n g . T h i r t e e n primary c a r e - g i v e r s f e l t they d i d not need any s e r v i c e s or more i n f o r m a t i o n . Mr. M. f e l t he would l i k e to t a l k to other f a m i l y members i n the same s i t u a t i o n . These p a t i e n t s f e l t t h a t the mastectomy v o l u n t e e r d i d not q u i t e meet t h i s need because they had a l r e a d y s u c c e s s f u l l y recovered. 9. Changes i n R e l a t i o n s h i p s w i t h  Family and F r i e n d s The f o l l o w i n g are p a t i e n t s ' responses to q u e s t i o n s 77 i n S e c t i o n V, C h a n g e s i n R e l a t i o n s h i p s w i t h f a m i l y and f r i e n d s , f o u n d i n t h e i n t e r v i e w s c h e d u l e . 1. S i n c e y o u f o u n d o u t t h a t y o u h a v e c a n c e r do y o u f i n d t h a t y o u r r e l a t i o n s h i p s h a v e c h a n g e d w i t h any o f t h e f o l l o w i n g : Y e s : 8 No: 8 S p o u s e C h i l d P a r e n t D o c t o r s F r i e n d s R e l a t i v e s O t h e r ( S p e c i f y I f " Y e s " c o u l d y o u t e l l me a n y more a b o u t t h i s ? R e s p o n s e s f o u n d i n "Comments". 2. Do y o u s e e any more o r l e s s o f y o u r f r i e n d s now? M o r e : 10 L e s s : 3 A b o u t t h e same: 3 I f m ore, who u s u a l l y i n i t i a t e s t h e s e c o n t a c t s ? S p o u s e : 0 S e l f : 0 F r i e n d s : 16 O t h e r : 0 i ) I s t h i s a c h a n g e ? Y e s : 16 No: 0 i i ) I f " Y e s " c o u l d y o u t e l l me more a b o u t i t ? R e s p o n s e s f o u n d i n "Comments". I f " Y e s " t o a n y c h a n g e a b o v e , a r e y o u c o n c e r n e d o r w o r r i e d a b o u t t h e s e c h a n g e s ? A g r e a t d e a l : 0 Some: 0 N o t a t a l l : 16 a) I f c o n c e r n e d a r e y o u w o r r i e d a b o u t t h e s e c h a n g e s M o r e : 0 The same: 0 L e s s : 0 NA: 16 t h a n b e f o r e d i a g n o s i s ? 3. Have you been a b l e to handle these changes without s e r i o u s d i f f i c u l t y ? NA: 16 Yes: 0 No: 0 4. Do you f e e l your own behaviour has changed, e.g. more i r r i t a b l e , more c h e e r f u l toward any of the f o l l o w i n g : Yes: 0 No: 16 Spouse C h i l d Parent Doctors No response F r i e n d s R e l a t i v e s Other ( S p e c i f y ) I f "Yes" co u l d you t e l l me any more about t h i s ? i ) To what extent do you see these changes as connected t o your i l l n e s s ? A g r e a t d e a l : 0 Somewhat: 0 Not a t a l l : 0 NA: 16 i i ) Do you have any concern about these changes i n your behaviour? No concerns: 0 Some: 0 A g r e a t d e a l : 0 NA: 16 5. Have you t o l d any of your f a m i l y , f r i e n d s or work a s s o c i a t e s you have cancer? a) Your c h i l d r e n Yes 14 No 0 NA 2 b) B r o t h e r s - S i s t e r s Yes 8 No 0 NA 8 c) Parents ( i f a l i v e ) Yes 1 No 4 NA 11 d) Neighbours Yes 13 No 3 NA 0 e) C o l l e a g u e s a t work Yes 6 No 2 NA 8 f) S u p e r v i s o r a t work Yes 6 No 2 NA 8 "I would now l i k e t o t a l k about who has helped you d e a l w i t h the kinds of changes we have been d i s c u s s i n g i n t h i s i n t e r v i e w . " 79 6. I f p o s s i b l e , i n o r d e r o f i m p o r t a n c e , l i s t t h o s e who h e l p and i n d i c a t e how t h e y h e l p y o u (do n o t r e a d l i s t ) : F i r s t C h o i c e S e c o n d C h o i c e S p o u s e S p o u s e : 13 D o c t o r s : 15 C h i l d S i s t e r : 2 C l e r g y m a n and P a r e n t s F r i e n d s : 1 D o c t o r s A. M a x w e l l E v a n s C l i n i c S t a f f F r i e n d s C l e r g y m a n R e l a t i v e s O t h e r ( S p e c i f y ) 7. R e g a r d i n g t h e p e r s o n ( s ) who h e l p ( s ) y o u m o s t now, i s t h i s t h e same p e r s o n ( s ) who h e l p e d y o u m o s t b e f o r e t h e d i a g n o s i s ? Y e s : 13 No: 3 ( I f "No" s p e c i f y who h e l p e d m o s t b e f o r e - H e l p e d m y s e l f ) I f " Y e s " h a v e y o u n o t i c e d a c h a n g e i n t h i n g s ( h e / t h e y ) do f o r y o u now? Y e s : 3 No: 13 Comments I n r e s p o n s e t o t h e q u e s t i o n " S i n c e y o u f o u n d o u t t h a t y o u h a v e c a n c e r do y o u f i n d t h a t y o u r r e l a t i o n s h i p s h a v e c h a n g e d w i t h any o f t h e f o l l o w i n g ? " e i g h t p a t i e n t s r e s p o n d e d " Y e s " . H o w e v e r , t h e o t h e r e i g h t p a t i e n t s who s a i d "No" a l s o m e n t i o n e d c h a n g e s i n t h e i r r e l a t i o n s h i p s w i t h o t h e r s . T h e r e -f o r e a l l 16 p a t i e n t s n o t i c e d some c h a n g e i n t h i s a r e a . A l l 16 p a t i e n t s s a i d t h e y w e r e c o n c e r n e d "Not a t a l l " a b o u t a n y o f t h e s e c h a n g e s . 80 R e l a t i o n s h i p s w i t h Primary C a r e - G i v e r s Four wives, Mrs. E., Mrs. F., Mrs. J . , and Mrs. L., s a i d they f e l t c l o s e r t o t h e i r husbands' who were t h e i r primary c a r e - g i v e r s . A d e s c r i p t i o n o f these f o u r cases f o l l o w s . Mr. E. had t o l d Mrs. E. she was a "wet b l a n k e t " and he was going t o "put her i n the d r i e r " b e f o r e he took her out. T h i s statement had become a f a m i l y joke as I heard i t twice from Mr. and Mrs. E. Mr. E.'s j o k i n g manner was a g r e a t morale booster to Mrs. E. who seemed q u i t e depressed t o i n t e r v i e w e r . Mrs. J . t o l d me her husband s a i d "Now get with i t , q u i t f e e l i n g so s o r r y f o r y o u r s e l f " which had been a t u r n i n g p o i n t i n her d e p r e s s i o n about the o p e r a t i o n . She was now h e l p i n g him with r e m o d e l l i n g the house. Mr. L. s a i d the answer was a g r e a t support to Mrs. L. who s a i d had c r i e d when she looked a t the sc a r and seemed anxious and depressed a t the time of i n t e r v i e w . Mrs. F.'s husband asked t o see the scar the minute she came home from h o s p i t a l s a ying "come on, I want to see i t " . H is a t t i t u d e was a g r e a t support to Mrs. F. who d i d not want to look a t h e r s e l f and d i d not u n t i l s e v e r a l days a f t e r her husband saw the s c a r . Mrs. C. and Mrs. D. who had not shown the scar to t h e i r husbands, were both about the same age, 4 8-49 and pr e -menopausal. The mastectomy was c r e a t i n g some changes i n t h e i r r e l a t i o n s h i p s w i t h spouses. Mrs. C. f e l t " i t was more 81 my d e c i s i o n " and she " j u s t was not ready" to show her husband the s c a r . For two weeks post mastectomy, Mrs. C. was on t r a n q u i l i z e r s , as her doctor f e l t the experience would be e m o t i o n a l l y u p s e t t i n g . The d o c t o r had t o l d Mrs. C. not to be alarmed by her d e p r e s s i o n as t h i s was n a t u r a l . Mrs. C. gave r e s e a r c h e r the impression t h a t she had been depressed b e f o r e the o p e r a t i o n . A week a f t e r the mastectomy Mrs. C. went to a p a r t y and people mentioned how much b e t t e r she looked. Both husband and wife t o l d me of t h i s i n c i d e n t . Her husband was very s u p p o r t i v e and s a i d " i t w i l l take time." The mastectomy seems t o have improved Mrs. C.'s r e l a t i o n s h i p s w i t h f a m i l y and f r i e n d s and p a r t i c u l a r l y with her husband. Mrs. D. has not shown the s c a r to her husband and has not had sexual r e l a t i o n s s i n c e her mastectomy s i x weeks ago. She had her o v a r i e s removed d u r i n g the same week and e x p l a i n s the s i t u a t i o n as "my husband i s l e a v i n g me alone u n t i l I get b e t t e r . " T h i s e x p l a n a t i o n i s o n l y s p e c u l a t i o n on Mrs. M a r t i n ' s p a r t as she has not d i s c u s s e d with her husband why he i s " l e a v i n g her alone". She seems to be q u i t e concerned about how to handle t h i s s i t u a t i o n . She d e s c r i b e d her marriage s e v e r a l times as " l i k e a rock" e x p l a i n i n g t h a t the two o p e r a t i o n s may have a f f e c t e d her sexual r e l a t i o n s h i p but c e r t a i n l y not her m a r i t a l r e l a t i o n s h i p . She seemed to separate these two areas c l e a r l y i n her mind. Mrs. D. a l s o mentioned she was w o r r i e d about f r i g h t e n i n g her 12 year o l d daughter who was very concerned about her mother. 82 The three widows seemed anxious about being dependent on t h e i r primary c a r e - g i v e r s f o r too long and each mentioned they were concerned about imposing on t h e i r busy l i v e s . Mrs. P.'s second mastectomy was a f f e c t i n g her r e l a t i o n s h i p w i t h her s i s t e r . She was d e c i d i n g whether she should impose on her again by s t a y i n g w i t h her f o r two weeks a f t e r her second o p e r a t i o n . Mrs. K. who d i d not want to stay alone i n her apartment, was concerned about keeping her s i s t e r from her s i c k husband. The r e s e a r c h e r s p e c u l a t e s t h a t the l o n g e r the primary c a r e - g i v e r i s requested to provide help the more anxious the s i n g l e person becomes about c r e a t i n g an i m p o s i t i o n . Four p a t i e n t s , Mrs. A., Mrs. F., Mrs. I . , Mrs. M., were f r u s t r a t e d by the f a c t they c o u l d not do more and were becoming someone f o r people t o "fuss over". Mrs. I. mentioned t h a t "her mother and s i s t e r telephoned d a i l y t o see i f she was a l l r i g h t " which annoyed her. Mrs. M . t o l d r e s e a r c h e r she has to t e l l people who telephone " j u s t do not worry, I am p e r f e c t l y a l l r i g h t . " Mrs. F. says "my husband s p o i l s me does anything I want" which seemed to upset her. Mrs. A. s a i d "my c h i l d r e n t r i e d t o pamper me, but I would not s i t s t i l l . " The r e s e a r c h e r s p e c u l a t e s t h a t t h i s annoyance may be connected with d i s c o m f o r t of the s i c k r o l e and some r o l e - r e v e r s a l on the p a r t of f a m i l y members who, i n t a k i n g the r o l e of mother and nurse, may make the p a t i e n t anxious. Moreover, although cancer i s a s e r i o u s 83 d i s e a s e , the re c o v e r y a f t e r mastectomy i s u s u a l l y r a p i d w i t h few s e r i o u s c o m p l i c a t i o n s . T h e r e f o r e the p a t i e n t may not f e e l sympathy f o r her i l l n e s s i s warranted although she does need some understanding of her f e a r s about having b r e a s t cancer. Three p a t i e n t s , Mrs. F., Mrs. H., and Mrs. I. mentioned t h e i r d i f f i c u l t y i n "not Overdoing" and becoming t i r e d . The husbands of these p a t i e n t s seemed aware of t h i s concern and f e l t r e s p o n s i b l e t o monitor t h e i r wives' a c t i v i t i e s , which seemed t o change t h e i r r e l a t i o n s h i p s . Mr. H. asked the r e s e a r c h e r whether he was doing too much or too l i t t l e i n the house and seemed anxious about h i s new r o l e . His wif e who had f i v e c h i l d r e n , two s t i l l a t home, was an e x c e l l e n t house-keeper, baked bread every week and kept 2% acres of garden and f o r e s t . C u r r e n t l y Mrs. H. was anxious, p a r t i c u l a r l y about the garden. She was f r u s t r a t e d a l s o w i t h her sore arm and tended to "overdo i t " . Mr. H. f e l t r e s p o n s i b l e f o r a l l o w i n g her to r e s t but he d i d not want t o t r e a t her as an i n v a l i d . T h i s r o l e was a d i f f i c u l t one f o r Mr. H. who never had done housework or gardening b e f o r e . Mrs. H. recog n i z e d t h a t her husband was a g r e a t support to her i n t h i s way by doing some of the work she "wanted to get done". Nine p a t i e n t s p e r c e i v e d t h i s experience as b r i n g i n g them c l o s e r together as a f a m i l y . Three p a t i e n t s mentioned t h i s experience a l s o brought them c l o s e r to other people. Mrs. H. s a i d "I always was the str o n g one people came to me 84 f o r h e lp. Everyone a t church was f l o o r e d . T h i s experience has been a l e a r n i n g experience f o r me and has brought me c l o s e r to people." In response to the q u e s t i o n "Do you see more or l e s s of your f r i e n d s now?" ten s a i d "more" and three s a i d "about the same" and three s a i d " l e s s " . Of the ten who s a i d "more" t h e i r f r i e n d s were i n i t i a t i n g more of the c o n t a c t s and t h i s was a change. Mrs. A. and Mrs. J . both s a i d "I d i d not know how many f r i e n d s I had." Of the three p a t i e n t s who were seei n g l e s s of t h e i r f r i e n d s , Mrs. M. c o u l d not have b i g dinner p a r t i e s because of nausea. She s a i d "I love company and f e e l badly t h a t I cannot have people over." The two other p a t i e n t s , Mrs. G. and Mrs. I . , were seei n g l e s s people because they were not working. A l l s i x t e e n p a t i e n t s responded "not a t a l l " to the q u e s t i o n "Are you concerned about any of these changes i n r e l a t i o n s h i p s ? " In response to the q u e s t i o n "Do you f e e l your own behaviour has changed" a l l s i x t e e n p a t i e n t s responded "No". G e n e r a l l y speaking, a l l s i x t e e n p a t i e n t s had the impression t h a t they t o l d everyone about t h e i r cancer d i a g n o s i s . On s p e c i f i c q u e s t i o n i n g , s e v e r a l persons were i d e n t i f i e d as not being t o l d . Mrs. A., Mrs. D., and Mrs. I. d i d not t e l l t h e i r husbands' mothers because they were "too o l d " and the d i a g n o s i s would worry them. Mrs. A. d i d not t e l l her f a t h e r f o r the same reason. Mrs. C., Mrs. D., and Mrs. P. d i d not t e l l t h e i r neighbours who they d i d not know too w e l l . Mrs. I. d i d not t e l l her p r i n c i p a l or some of her teacher c o l l e a g u e s f o r f e a r of j e o p a r d i z i n g her e m p l o y a b i l i t y . A l l f o u r t e e n mothers t o l d t h e i r c h i l d r e n . In response to the q u e s t i o n " L i s t those who help you i f p o s s i b l e i n order of importance" a l l 16 p a t i e n t s l i s t e d t h e i r f a m i l i e s and primary c a r e - g i v e r s f i r s t , 15 p a t i e n t s ' second choice was t h e i r d o c t o r and Mrs. H. chose her clergyman. In response to the q u e s t i o n "Regarding the person who h e lps you most now i s t h i s the same person who helped you b e f o r e the d i a g n o s i s ? " 13 responded "Yes" and the three widows responded "No" s p e c i f y i n g "myself" as the person who helped b e f o r e . Three p a t i e n t s , Mrs. E., Mrs. F., and Mrs. H., n o t i c e d a change i n t h i n g s primary c a r e - g i v e r s d i d f o r them now s p e c i f y i n g t h a t f a m i l i e s showed more concern. 10. F e e l i n g s About S e l f The f o l l o w i n g are p a t i e n t responses to q u e s t i o n s i n the i n t e r v i e w schedule on changes i n f e e l i n g s about s e l f . 1) How much would you say your f e e l i n g s about y o u r s e l f have changed toward any of the f o l l o w i n g : a) f e e l i n g s of p e r s o n a l a t t r a c t i v e n e s s ? Unable to say: 0 Not a t a l l : 10 Somewhat: 6 A g r e a t d e a l : " 0 b) F e e l i n g s of being competent w i t h i n and o u t s i d e the home?: 0 c) A b i l i t y t o be independent?: Somewhat: 1 d) F e e l i n g s towards f u l f i l l i n g o t h e r s ' e x p e c t a t i o n s and being r e s p o n s i b l e ? : Somewhat: 1 e) F e e l i n g s o f being able to maintain present l e v e l of income and l i v i n g c o n d i t i o n s ? : 0 f) Other ( s p e c i f y ) ? : 0 I f somewhat or a g r e a t d e a l which of the above concerns you the most? Next? NA = X 2. Of a l l your concerns which we have mentioned i n t h i s i n t e r v i e w , what would most l i k e l y h e lp w i t h a t t h i s time? Three p a t i e n t s s a i d h elp w i t h p r o s t h e s i s ; 13 p a t i e n t s s a i d "no help needed". 3. Would you l i k e t o add any f u r t h e r comments? No: 7 C l i n i c very h e l p f u l : 9 Comments In answer to the q u e s t i o n "How much would you say your f e e l i n g s about y o u r s e l f have changed?" s i x p a t i e n t s f e l t t h e i r f e e l i n g s of p e r s o n a l a t t r a c t i v e n e s s had changed somewhat. Mrs. E. a l s o f e l t her f e e l i n g s about a b i l i t y to be independent and f u l f i l l i n g o t h e r s ' e x p e c t a t i o n s had changed somewhat. No other changes i n f e e l i n g s about s e l f were mentioned when the q u e s t i o n was asked d i r e c t l y but s e v e r a l people r e p o r t e d changes i n f e e l i n g s about s e l f d u r i n g the course of the i n t e r v i e w . Mrs. C. commented t h a t she got more upset about other t h i n g s than her h e a l t h , such as b u r s t i n g i n t o t e a r s over s e l l i n g the house. Mrs. I . , i n t a l k i n g about her work r o l e , a l s o mentioned t h a t she always had an image of h e r s e l f as s t r o n g and h e a l t h y which had now changed. Mrs. L. s a i d she f e l t "uncomfortable" w i t h h e r s e l f and had not gone to church s i n c e the mastectomy because as she says "people are so i n q u i s i t i v e , p a r t i c u l a r l y the young ones". Mrs. E. s a i d she f e l t embarrassed and s a i d she would not go out to p l a y bingo u n t i l she got a p r o s t h e s i s . In response to the q u e s t i o n "Of a l l your concerns which we have mentioned i n t h i s i n t e r v i e w what would you l i k e h e l p w i t h most at t h i s time?", three p a t i e n t s , Mrs. E., Mrs. F., and Mrs. L., mentioned help with the p r o s t h e s i s , the other t h i r t e e n p a t i e n t s s a i d they d i d not need any h e l p . In response to the q u e s t i o n "Do you have any f u r t h e r comments?", seven p a t i e n t s s a i d "no" and nine s a i d "yes", commenting t h a t they were "very happy with the C l i n i c ' s treatment of them as p a t i e n t s . " Mrs. K. added " t h i s was the f i r s t time a d o c t o r ever shook my hand." T h i s concludes an account of p a t i e n t and f a m i l y members' responses t o the i n t e r v i e w schedule. 11. Degree 6f Concern and Amount of Change Although the i n t e r v i e w schedule's measure of degree of concern or change was not r e l i a b l e , the r e s e a r c h e r f e e l s a s u b j e c t i v e account of the r e s e a r c h e r ' s p e r c e p t i o n of degree of a n x i e t y may be u s e f u l . The r e s e a r c h e r f e l t t h a t e i g h t p a t i e n t s p e r c e i v e d more changes and were g e n e r a l l y more 88 anxious about t h e i r s i t u a t i o n than the other p a t i e n t s . T h i s g r e a t e r a n x i e t y was i n d i c a t e d to the r e s e a r c h e r i n the f o l l o w i n g ways: Mrs. C. s a i d she was more upset and t e a r f u l about other t h i n g s r e c e n t l y and was on t r a n q u i l i z e r s . Mrs. D. s a i d she was very anxious about treatments and s a i d she "hated t h a t p l a c e " i n r e f e r e n c e to the C l i n i c . The three husbands of Mrs. E., Mrs. F., and Mrs. I . , s a i d t h e i r wives were u n u s u a l l y "highstrung" and " u p t i g h t " and these three p a t i e n t s mentioned many concerns t o the r e s e a r c h e r . Mrs. K. and Mrs. L. mentioned having dreams, waking i n the n i g h t and s a i d they were anxious about treatment e f f e c t i v e n e s s . The p r o f i l e s of these e i g h t p a t i e n t s do not appear s i m i l a r i n any way, although a l l e i g h t mentioned d i f -f i c u l t y i n e i t h e r a d j u s t i n g t o l o s s o f a b r e a s t o r l o s s o f good h e a l t h . The r e s e a r c h e r s p e c u l a t e s t h a t t h i s a n x i e t y may be a t t r i b u t e d to the a t t i t u d e s of these e i g h t p a t i e n t s toward the va l u e of t h e i r b r e a s t s and good h e a l t h p r i o r to d i a g n o s i s and surgery. T h i s a s s o c i a t i o n has been mentioned 82 i n the l i t e r a t u r e . However, as t h i s study d i d not e x p l o r e the value of the b r e a s t t o the p a t i e n t p r i o r to surgery, t h i s i d e a i s s t i l l pure s p e c u l a t i o n . P o s s i b l y these e i g h t p a t i e n t s were n a t u r a l l y more i n c l i n e d to be anxious than the other e i g h t p a t i e n t s . 12. Other F i n d i n g s A number of other f i n d i n g s were d i s c o v e r e d d u r i n g 89 the i n t e r v i e w s which were not connected to s p e c i f i c questions i n the schedule. Old Depressions The researcher found that i n t a l k i n g about the mastectomy p a t i e n t s brought up sources of depressions i n the past. Mrs. P. t o l d the researcher about the heart attack of her husband, the almond poisoning of her brother and the sudden death of her b r o t h e r - i n - l a w as i f the mastectomy r e l a t e d t o other l o s s e s and endings and was j u s t another t h i n g to cope w i t h i n l i f e . R ecognition of M o r t a l i t y Mrs. M. (who had l i v e r metastasis) and the widows Mrs. G., Mrs. K., and Mrs. P., wished to t e l l the researcher about t h e i r l i v e s and showed o l d p i c t u r e s of themselves w i t h husbands and c h i l d r e n , r a t h e r than t a l k about t h e i r mastectomy experience. The researcher f e l t t h i s was an i n d i c a t i o n t h a t these l a d i e s were spending some time l o o k i n g back over t h e i r l i v e s and experiencing a sudden awareness of m o r t a l i t y and past endings. This f i n d i n g may a l s o i n d i c a t e a c e r t a i n degree of d e n i a l . Breast Phantom and Loss Three p a t i e n t s , Mrs. E., Mrs. F., and Mrs. L seemed to p a r t i c u l a r l y express t h e i r f e e l i n g s of " l o s s " a f t e r the 90 mastectomy t o the r e s e a r c h e r . Mrs. L. who was q u i t e heavy b r e a s t e d mentioned she experienced phantom limb s e n s a t i o n s i n her m i s s i n g b r e a s t . Mrs. L. s a i d she had c r i e d and f e l t " r e a l l y bad" about h e r s e l f on f i r s t r e t u r n i n g home from h o s p i t a l , which seems to i n d i c a t e a deep sense of l o s s . Mrs. E. and Mrs. F. a l s o q u i t e heavy b r e a s t e d mentioned d i f f i c u l t y with the other b r e a s t i n c r e a t i n g a l o p s i d e d , unbalanced f e e l i n g about themselves, which i n d i c a t e d t h e i r sense of l o s s . These three p a t i e n t s were very concerned about how soon they c o u l d wear a p r o s t h e s i s . The other 13 p a t i e n t s d i d not express t h i s s p e c i f i c a n x i e t y about o b t a i n i n g a p r o s t h e s i s . D e n i a l D e n i a l of changes and concerns seemed to be i n evidence most s t r o n g l y i n two cases, Mrs. A. and Mrs. B., who both had Stage I I cancers w i t h "guarded" prognoses. As was p r e v i o u s l y mentioned, " d e n i a l " may be an e f f e c t i v e coping s t r a t e g y t o help p a t i e n t s a d j u s t to f u t u r e changes i n h e a l t h . T h e i r diagnoses and "guarded" prognoses may be connected to t h e i r d e n i a l o f changes or concerns a t the time o f the i n t e r v i e w . A synopsis o f the i n t e r v i e w s w i t h Mrs. A. and Mrs. B. and her husband, f o l l o w t o i l l u s t r a t e the i n t e r v i e w e r ' p e r c e p t i o n s of d e n i a l i n these two cases. Mrs. A. Case Synopsis; Mrs. A.'s main concern was t h a t treatment w i l l d e l a y h o l i d a y s and she w i l l not be able to take her 14 year o l d on a promised t r i p t o Di s n e y l a n d . "There i s no change i n t h i s f a m i l y a t a l l " she says. "I was out d i g g i n g i n the garden the day I was out of h o s p i t a l . " My husband says "there i s no change so why bother t o be in t e r v i e w e d . " Mrs. A. l a t e r s a i d she n o t i c e s a change i n f e e l i n g c l o s e r to her f a m i l y . She s a i d , "The c h i l d r e n showed a g r e a t d e a l of concern." Mrs. A. s a i d "the c h i l d r e n attempt to pamper me but gave up because I would not s i t s t i l l . " She l a t e r s a i d a f t e r the scheduled i n t e r v i e w was over t h a t her 21 year o l d daughter was h e l p i n g w i t h some c l e a n i n g , cooking and shopping. Mrs. A. sees more of her f r i e n d s now: "I d i d not r e a l i z e how many c l o s e f r i e n d s I had." She f e e l s a s l i g h t change i n p e r s o n a l a t t r a c t i v e n e s s but no other changes i n s e l f . She adds "I'm very h e a l t h y now, the muscles h u r t i n my arm but i t ' s j u s t a matter o f time." Mrs. A. added she does not get down because she " j u s t gets up and does something." Mrs. A. has a Stage II cancer with a guarded p r o g n o s i s . Interviewer had impression d e n i a l was a l l o w i n g her to remain c h e e r f u l and c a r r y on as-i f e v e r y t h i n g were back to normal although she was aware she would be having treatments f o r one year. A l s o , i n t e r v i e w e r f e l t husband must be under some s t r e s s because he o r i g i n a l l y s a i d he would l i k e t o be i n t e r v i e w e d and then changed h i s mind. The r e s e a r c h e r had the impression he was not i n v o l v e d a t t h i s time i n h i s w i f e ' s r e c o v e r y , which she appeared t o want to handle h e r s e l f . Mrs. B. Case Synopsis: Mrs. B.'s response to "What i s your main concern?" was: "not a darn t h i n g - no sense, no f e e l i n g . " Her husband d i d the cooking her f i r s t week out of h o s p i t a l but a f t e r t h a t she c a r r i e d on as normal. Mrs. B. impressed upon me the f a c t t h a t there were no changes except "her son c a l l s o f t e n . " Interviewer had impression Mrs. B. a l s o a Stage II cancer p a t i e n t , took a s i m i l a r approach to d e n i a l as Mrs. A. although the i n t e r v i e w w i t h Mrs. B. took p l a c e l a t e r , seven weeks a f t e r mastectomy. Primary Care-Giver Interview: Synopsis: Mr. B.'s main concern i s h i s w i f e ' s h e a l t h , and whether treatment w i l l be s u c c e s s f u l . He says "they c l a i m they can f i x i t - i t ' s s t i l l up i n the a i r you know." He adds: "This h i t us l i k e a time bomb - I j u s t hope t h a t my w i f e i s taken care of by t h i s bomb s h e l l ( c o b a l t ) ! " As f a r as changes i n f a m i l y r o l e s and r e s p o n s i b i l i t i e s , Mr. B. say "we c a r r y on p r e t t y much as b e f o r e - I do more of the d i s h e and shopping though. She's not i n any p a i n a t a l l , no p a i n whatsoever - f e e l s nothing r e a l l y . " I n t e r v i e w e r had impression husband was a c t i v e l y i n v o l v e d i n p a t i e n t ' s recovery, seemed to put words to Mrs. B.'s f e e l i n g s and r e c o g n i z e d her d e n i a l of changes a t t h i s time. The Next Stage - 10 Months a f t e r the Mastectomy Mrs. 0. had her mastectomy i n August 1977 and was 93 r e t u r n i n g to the C l i n i c f o r follow-up t e s t s f o r p o s s i b l e r e c u r r e n t d i s e a s e . At the time of i n t e r v i e w , she was w a i t i n g f o r the r e s u l t s from these t e s t s . Mrs. O.'s major concerns focussed around a search f o r c a u s a l i t y i n order to change her l i f e s t y l e and d i e t and thus remain h e a l t h y . Mrs. 0. had decided i n the l a s t few months t h a t i t was the bacon f a t i n her d i e t and many changes i n r e s i d e n c e t h a t caused her b r e a s t cancer. T h e r e f o r e , changes i n her l i f e c u r r e n t l y i n v o l v e d a d e c i s i o n to modify her d i e t and move back t o her home i n the Maritimes, where the l i f e was f a m i l i a r and l e s s s t r e s s f u l . 13. The Independent V a r i a b l e s Which Seemed to I n f l u e n c e  P e r c e p t i o n s of Socioeconomic Change and Concerns, as  p r e v i o u s l y posed i n the problem f o r m u l a t i o n . The treatment p l a n proposed and time of i n t e r v i e w The s e r i o u s n e s s of the d i a g n o s i s , e i t h e r Stage I, I I , I I I or IV, d i d not seem to i n f l u e n c e p e r c e p t i o n s of s o c i o -economic change. However, the p a t i e n t s ' c u r r e n t experience with treatment d i d seem to i n f l u e n c e p e r c e p t i o n of change and degree of concern. The ten p a t i e n t s i n t e r v i e w e d before t h e i r r a d i a t i o n treatments seemed t o be the most anxious, to have the most socioeconomic concerns and to be f u t u r e o r i e n t e d , a n t i c i p a t i n g the end of treatment. Mrs. K., Stage I I I , and Mrs. E., and Mrs. F., Stage I, had socioeconomic concerns and a l s o mentioned problems with s l e e p i n g . The four p a t i e n t s , i . e . Mrs. I . , Mrs. L. , Mrs. M., and Mrs. N., i n t e r v i e w e d d u r i n g treatments seemed to be g e n e r a l l y l e s s anxious than p a t i e n t s awaiting treatment. Mrs. N. s a i d "you j u s t take each day a t a time." The two p a t i e n t s , Mrs. G. and Mrs. J . , i n t e r -viewed a f t e r t e s t s and/or treatment, seemed the l e a s t anxious about medical concerns and were t h i n k i n g more about the long range f u t u r e . Mrs. G. was wondering when and i f she should r e t u r n to work. Mrs. J . s a i d "I j u s t hope I do not have to go through a l l t h i s again',1, and was p l a n n i n g t o r e t u r n to normal a c t i v i t i e s a t her own speed. T h e r e f o r e the respondents p e r c e p t i o n s of c u r r e n t socioeconomic concerns seem to be i n f l u e n c e d by the time i n t e r v i e w e d i n terms of treatment. Prev i o u s Experience w i t h Cancer In response t o the q u e s t i o n "Have you or any f a m i l y member had any p r e v i o u s experience w i t h cancer as an i l l n e s s ? " , 12 p a t i e n t s responded "Yes". Three f a t h e r s , two mothers, f o u r b r o t h e r s and s i s t e r s , f o u r aunts and u n c l e s , two grandmothers and one nephew were mentioned by p a t i e n t s as having cancer. Mrs. P.'s mother d i e d o f b r e a s t cancer, and t h i s may a f f e c t her p e r c e p t i o n of h e r s e l f "going s t r o n g e r than ever." Mrs. M.'s f a t h e r - i n - l a w d i e d o f l i v e r cancer and t h i s experience may a f f e c t her a t t i t u d e "I am f i n e , do not worry." These two p a t i e n t s took more of an o p t i m i s t i c stance about t h e i r i l l n e s s treatment and t h e i r socioeconomic s i t u a t i o n than Mrs. E. or Mrs. K., who had no p r e v i o u s experience w i t h cancer. P r e v i o u s I l l n e s s e s Women who had no pr e v i o u s i l l n e s s or s e r i o u s o p e r a t i o n s b e f o r e seemed t o be more uncomfortable w i t h the s i c k r o l e , and wit h having cancer. They a l s o p e r c e i v e d more socioeconomic concerns. T h e r e f o r e p e r c e p t i o n s of socioeconomic change seem to be i n f l u e n c e d by p r e v i o u s experience with i l l n e s s . Three p a t i e n t s responded "Yes" t o the q u e s t i o n "Have you experienced any pr e v i o u s i l l n e s s e s ? " Mrs. M. had experienced a h e r n i a and glaucoma, Mrs. J . , a c o l l a p s e d womb, and Mrs. P., a thyroidectomy. These p a t i e n t s seemed to ad j u s t more e a s i l y t o the s i c k r o l e and to be l e s s anxious about t h e i r socioeconomic s i t u a t i o n than the 13 p a t i e n t s who had not experienced p r e v i o u s i l l n e s s . Mrs. H., who had never been i l l , s a i d "I have always been the stro n g one. I t i s s t i l l a shock t h i s cannot be happening to me." The primary c a r e - g i v e r s o f Mrs. J . , Mrs. M. and Mrs. P. seemed to a l s o a d j u s t and adapt more e a s i l y t o the p a t i e n t s ' s i c k r o l e s than Mr. H. who had never known h i s w i f e to be i l l . L i v i n g S i t u a t i o n and Age The t h r e e widows who l i v e d alone seemed to show the most concern about t h e i r socioeconomic s i t u a t i o n . T h e i r concerns were f u t u r e o r i e n t e d . Mrs. K.'s concerns l a y w i t h f u t u r e housing, Mrs. G.'s concerns w i t h p o t e n t i a l e m p l o y a b i l i t y and Mrs. P.'s concerns w i t h f i n d i n g something to f i l l her l i f e s i n c e her husband's death. A l l three widows expressed some f e a r s about imposing too long on t h e i r primary c a r e - g i v e r s , who d i d not l i v e with them, but on whom they were t e m p o r a r i l y dependent. T h i s a n x i e t y c r e a t e d s t r e s s on t h e i r r e l a t i o n s h i p s w i t h primary c a r e - g i v e r s and added a n x i e t y to t h e i r s o c i o -economic s i t u a t i o n . Mrs. I . , the married s c h o o l teacher i n her t h i r t i e s without c h i l d r e n , had a unique socioeconomic concern about her f u t u r e e m p l o y a b i l i t y and l i f e expectancy. The women i n t h e i r 40's and 50's and e a r l y 60's, l i v i n g w i t h husbands and c h i l d r e n seemed somewhat anxious about t h e i r socioeconomic s i t u a t i o n , p a r t i c u l a r l y i f they were employed, even though they were aware of t h e i r f a m i l i e s ' support. The cancer d i a g n o s i s seems to have brought t o t h i s age group a sudden awareness of m o r t a l i t y and p o s s i b l e change i n e m p l o y a b i l i t y , l i f e expectancy, sexual a t t r a c t i v e n e s s and l i f e s t y l e w ith t h e i r husband i n f u t u r e r e t i r e m e n t . Women i n 60's or 70's l i v i n g w i t h husbands i n a r e t i r e d q u i e t l i f e s t y l e a d j u s t e d w i t h the l e a s t socioeconomic change or concern to the d i a g n o s i s and treatment of b r e a s t cancer. As Mrs. M. s a i d "at our age (79) you begin to accept these t h i n g s . " Mr. B. s a i d " t h i n g s go on p r e t t y much as bef o r e . " P a t i e n t s i n t h i s age group seem a l r e a d y t o have some acceptance of m o r t a l i t y . P a t i e n t s ' concerns centred, more around f e e l i n g s of p e r s o n a l a t t r a c t i v e n e s s , t h e i r appearance, and s o c i a l concerns about people l o o k i n g a t them or ot h e r s worrying too much. S e r v i c e s Received P r i o r to Interview The s e r v i c e s r e c e i v e d or not r e c e i v e d by p a t i e n t s d i d not seem to i n f l u e n c e the u n i v e r s a l l y p o s i t i v e a t t i t u d e of p a t i e n t s toward the C l i n i c s t a f f . Although Mrs. D. s a i d she "hates the p l a c e " , she e x p l a i n e d i t was not the people, p s y c h o l o g i c a l r e a c t i o n to going t h e r e f o r treatment. 98 Chapter V SUMMARY AND RECOMMENDATIONS 1. Summary The purpose of t h i s study was to i d e n t i f y some of the needs of b r e a s t cancer p a t i e n t s and t h e i r f a m i l i e s which a r i s e from socioeconomic change and changes i n r o l e s and r e l a t i o n s h i p s a f t e r the mastectomy. As r e s e a r c h w i t h cancer p a t i e n t s i s r e l a t i v e l y new at the C l i n i c , the e x p l o r a t o r y nature o f t h i s study was s t r e s s e d i n the problem f o r m u l a t i o n . The d e s i g n allows f o r needs t o be i d e n t i f i e d through requests f o r s e r v i c e by the respondents themselves and through the r e s e a r c h e r ' s p e r c e p t i o n s of needs from p e r s o n a l i n t e r v i e w s about socioeconomic changes and concerns. T h i s e x p l o r a t i o n o f the needs of b r e a s t cancer p a t i e n t s w i l l improve the pl a n n i n g and implementation of support s e r v i c e s t o b r e a s t cancer p a t i e n t s and t h e i r f a m i l i e s by the p r o f e s s i o n a l team at the A. Maxwell Evans C l i n i c . The scope of t h i s study was r e s t r i c t e d to c o n s i d e r i n g new b r e a s t cancer p a t i e n t s r e f e r r e d to the C l i n i c i n May, 1978 and t h e i r primary c a r e - g i v e r s . The sample was s t r a t i f i e d to allow f o r r e p r e s e n t a t i o n o f the f o u r stages o f cancer. Two p a t i e n t s i n the sample had r e c e i v e d a cancer d i a g n o s i s b e f o r e . One of these p a t i e n t s was e x p e r i e n c i n g r e c u r r e n t d i s e a s e . The remaining 14 p a r t i c i p a n t s were e x p e r i e n c i n g t h e i r f i r s t d i a g n o s i s and treatment o f cancer. 99 The focus of the study was the perception of the p a t i e n t and the primary c a r e - g i v e r s of socioeconomic change, changes i n r o l e s and r e l a t i o n s h i p s i n t h e i r f a m i l y and t h e i r f e e l i n g s about s e l f . The i n t e r v i e w schedule gathered demographic and medical i n f o r m a t i o n , perceptions of d i a g n o s i s and treatment, perceptions of changes i n place of residence, changes i n work r o l e s , income and t r a n s p o r t a t i o n , changes i n f a m i l y r e s p o n s i b i l i t i e s , r e l a t i o n s h i p s w i t h f a m i l y and f r i e n d s and f e e l i n g s about s e l f . The main source of data was the i n t e r v i e w schedule and i n f o r m a t i o n gathered by the d i r e c t o r of the New P a t i e n t s C l i n i c from p a t i e n t f i l e s . A l l p a t i e n t s and primary c a r e - g i v e r s were i n t e r e s t e d i n t a l k i n g w i t h the researcher and had a v a r i e t y of questions to ask of the researcher. The respondents' l e v e l of involvement seemed to improve toward the end of the i n t e r v i e w i f the researcher took time to d i s c u s s what was of p r e s s i n g i n t e r e s t or concern to the respondent r e g a r d l e s s of the i n t e r v i e w schedule. The f i n d i n g s from responses to the i n t e r v i e w schedule i n d i c a t e d t h a t a l l p a t i e n t s and primary c a r e - g i v e r s perceive some changes i n socioeconomic s i t u a t i o n and/or r o l e s and r e l a t i o n -s h i p s , but these changes were perceived to be minor and of only a moderate degree of concern. Family members and p a t i e n t s agreed on the number of p r a c t i c a l changes i n t h e i r d a i l y f a m i l y r o l e s and r e s p o n s i b i l i t i e s and no respondent s a i d he or she was "very concerned" about these changes. As mentioned i n the l i t e r a t u r e review, breast cancer p a t i e n t s 100 o f t e n use d e n i a l as a c o p i n g s t r a t e g y p a r t i c u l a r l y i n the 8 3 f i r s t month a f t e r the mastectomy. T h e r e f o r e , d e n i a l , as d e f i n e d f o r t h i s study, was given c o n s i d e r a t i o n i n i n t e r p r e t i n g the f i n d i n g s . However, t h i s d esign does not o f f e r a way t o measure the degree of i n f l u e n c e of d e n i a l on the f i n d i n g s . The r e s e a r c h e r r e p o r t s t h a t e i g h t p a t i e n t s showed a g r e a t e r degree of a n x i e t y than the o t h e r s as i n d i c a t e d by t h e i r comments about not s l e e p i n g , dreaming, t a k i n g t r a n q u i l i z e r s and being g e n e r a l l y upset. The r e s e a r c h e r r e c o g n i z e d t h a t although these p a t i e n t s d i d not have s i m i l a r p r o f i l e s they a l l i n d i c a t e d a d i f f i c u l t y i n a d j u s t i n g to l o s s of a b r e a s t or to l o s s of good h e a l t h . The r e s e a r c h e r s p e c u l a t e s whether the value of the l o s t b r e a s t may be a s s o c i a t e d w i t h post-mastectomy a n x i e t y . T h i s 84 a s s o c i a t i o n i s mentioned i n the l i t e r a t u r e . A l l p a t i e n t s and primary c a r e - g i v e r s who needed p r a c t i c a l s e r v i c e s were r e c i e v i n g them and a t the time they were needed. A few p a t i e n t s and primary c a r e - g i v e r s mentioned needs f o r emotional support s e r v i c e s . A l l p a t i e n t s were very p l e a s e d w i t h the treatment they r e c e i v e d from the s t a f f a t the A. Maxwell Evans C l i n i c . 2. The S u i t a b i l i t y and L i m i t a t i o n s  of the Instrument The i n t e r v i e w schedule's focus on socioeconomic concerns and changes i n r o l e s and r e l a t i o n s h i p s to i d e n t i f y p a t i e n t needs was s u c c e s s f u l f o r t h r e e reasons. F i r s t l y , as 101 b r e a s t cancer p a t i e n t s u s u a l l y have a f a v o u r a b l e p r o g n o s i s , t h e i r thoughts are u s u a l l y focussed towards r a p i d r e h a b i l i t a t i o n and a f u t u r e d a i l y l i f e without d i s a b i l i t y . T h e r e f o r e , d i s c u s s i n g concerns about socioeconomic changes, changes i n r o l e s and r e l a t i o n s h i p s and f e e l i n g s about s e l f seemed to be r e l e v a n t to t h e i r needs. Secondly, t h i s focus was a l s o n on-threatening f o r b r e a s t cancer p a t i e n t s who may not wish to d i s c u s s t h e i r p s y c h o l o g i c a l adjustment to mastectomy. I f p a t i e n t s wished to t a l k about t h e i r emotional adjustment, they d i d so v o l u n t a r i l y . T h i r d l y , socioeconomic change and f a m i l y r o l e s and r e l a t i o n s h i p s i s r e l e v a n t to the s o c i a l s e r v i c e department's mandate. T h e r e f o r e , as a s o c i a l work study, t h i s r e s e a r c h i d e n t i f i e d needs from the s o c i a l work p e r s p e c t i v e a t the C l i n i c . In t h i s way, needs and s e r v i c e s recommended from t h i s study w i l l have a r e c o g n i z a b l e base from which t o c o n s i d e r p r a c t i c a l a p p l i c a t i o n s of the f i n d i n g s . However, the s t r u c t u r e d i n t e r v i e w schedule had two l i m i t a t i o n s i n t h i s e x p l o r a t o r y study. F i r s t l y , the responses to the two s c a l e s which measured degree of concern and amount of change ac r o s s the areas of socioeconomic change r e s u l t e d i n l i t t l e v a r i a b i l i t y . P o s s i b l y the s c a l a r measures were not s u i t a b l e f o r the time and s i t u a t i o n of these respondents. Some re c o g n i z e d s c a l a r measures of a n x i e t y such as the S p i e l b e r g e r A n x i e t y S c a l e , would have been u s e f u l t o complement open-ended q u e s t i o n s on degree o f concern. 102 Secondly, a more l o o s e l y s t r u c t u r e d schedule focussed on the same t o p i c s , would have l e n t more e a s i l y t o the c o n v e r s a t i o n a l i n t e r v i e w s t y l e which the r e s e a r c h e r found e s s e n t i a l f o r t h i s k i n d of e x p l o r a t o r y study. 3. C o n c l u s i o n s 1. The m a j o r i t y of p a t i e n t s and primary c a r e - g i v e r s f e l t t h e i r f a m i l i e s were " c l o s e r " as a r e s u l t of t h i s e x p e r i e n c e . The r e s e a r c h e r concludes t h a t f a m i l i e s may o f t e n strengthen and see the need to strengthen to m a i n t a i n an unchanging s t a b i l i t y through the s t r e s s of a cancer d i a g n o s i s and treatment. 2. D e n i a l i s o f t e n a n o t i c e a b l e s t r a t e g y f o r p a t i e n t s and primary c a r e - g i v e r s to handle t h i s s t r e s s f u l e x p e r i e n c e . 3. Widows seem to have the most socioeconomic concerns and experience the most a n x i e t y about change. These p a t i e n t s a l s o f e a r t h a t f u t u r e needs may e v e n t u a l l y be i m p o s i t i o n s on t h e i r primary c a r e - g i v e r s . The primary c a r e - g i v e r s d i d not i n d i c a t e to the r e s e a r c h e r or to the p a t i e n t t h a t they f e l t imposed upon. The r e s e a r c h e r concludes t h a t s i n g l e persons and widows have unique concerns from p a t i e n t s who l i v e w i t h t h e i r primary c a r e - g i v e r s . 4. A l l 11 husbands i n t e r v i e w e d f e l t r e s p o n s i b l e and concerned about t h e i r wives' r e h a b i l i t a t i o n . These husbands were i n v o l v e d i n a temporary r o l e - r e v e r s a l i n the home and 8 seemed t o the r e s e a r c h e r to be somewhat uneasy wi t h t h i s change. One husband asked r e s e a r c h e r i f what they 103 were doing was enough or should they do more. Another husband s a i d i t would be h e l p f u l t o t a l k to other primary c a r e - g i v e r s i n the same s i t u a t i o n . The r e s e a r c h e r concludes t h a t the husband as primary c a r e - g i v e r wants to be i n v o l v e d i n h e l p i n g the p a t i e n t i n recovery and t h a t some are u n c e r t a i n about the b e s t way to do t h i s . A l l p a t i e n t s seemed to f i n d w a i t i n g f o r the mastectomy o p e r a t i o n and then w a i t i n g f o r C l i n i c cancer treatments the two most s t r e s s f u l time p e r i o d s . Most p a t i e n t s do not seem to be aware t h a t the Mastectomy V o l u n t e e r s can help w i t h p r e - s u r g i c a l c o u n s e l l i n g as w e l l as p o s t - s u r g i c a l r e h a b i l i t a t i o n . The r e s e a r c h e r concludes t h a t " w a i t i n g f o r treatment" i s a problem f o r some cancer p a t i e n t s . P a t i e n t s mentioning the value of t a l k i n g to other p a t i e n t s going through the same experience were u s u a l l y p a t i e n t s who had met oth e r p a t i e n t s i n the t r a n s p o r t a t i o n s e r v i c e or a t the h o s p i t a l and found t h i s h e l p f u l . The r e s e a r c h e r concludes t h a t i f p a t i e n t s are a l r e a d y f i n d i n g other p a t i e n t s t o t a l k about concerns, a need has been i d e n t i f i e d . Recommendations Future r e s e a r c h needs t o be conducted t o e x p l o r e the unique concerns of the widow and s i n g l e person i n the face of a cancer d i a g n o s i s . T h i s study should a l s o i n v o l v e the s t r e s s on the r e l a t i o n s h i p between the s i n g l e person and primary c a r e - g i v e r . More r e s e a r c h needs t o be done to i n v e s t i g a t e the r o l e 104 of d e n i a l i n h e l p i n g and/or h i n d e r i n g cancer p a t i e n t s to a d j u s t to d i a g n o s i s , treatment and r e h a b i l i t a t i o n . 3. More r e s e a r c h i s needed to i n v e s t i g a t e the i n f l u e n c e of the v a l u e of the l o s t b r e a s t on the p a t i e n t ' s r e h a b i l i t a t i o n and r e l i e f from a n x i e t y a f t e r surgery. 4. A study of primary c a r e - g i v e r s and p a t i e n t s of d i f f e r e n t types o f cancer w i t h the focus "What are the b e s t a c t i v i t i e s and a t t i t u d e s f o r the primary c a r e - g i v e r (and family) to have i n order to help the p a t i e n t s ? " would be most u s e f u l . 5. A weekly telephone follow-up from the s o c i a l work department to p a t i e n t s w a i t i n g f o r t h e i r treatments t o s t a r t would a l l e v i a t e t h e i r g e n e r a l a n x i e t y . T h i s telephone c a l l may a l s o serve to answer q u e s t i o n s which seem to occur to p a t i e n t s while they are r e s t i n g a t home. 6. The p a t i e n t who i s w a i t i n g f o r surgery would be r e a s s u r e d i f she were informed r o u t i n e l y about the p r e - s u r g i c a l c o u n s e l l i n g s e r v i c e of the mastectomy v o l u n t e e r s sponsored by the Canadian Cancer S o c i e t y . The surgeon's nurse c o u l d be r e s p o n s i b l e f o r i n f o r m i n g p a t i e n t s . 7. A v o l u n t a r y group i d e a l l y f o r a l l new b r e a s t p a t i e n t s beginning treatment a t the C l i n i c would have an e d u c a t i o n a l r a t h e r than a t h e r a p e u t i c focus f o r p a t i e n t s who wished to share concerns and q u e s t i o n s about changes i n f a m i l y r o l e s and r e l a t i o n s h i p s , socioeconomic change, and changes i n h e a l t h and f e e l i n g s about s e l f w i t h other p a t i e n t s i n 105 the same s i t u a t i o n . As a l l p a t i e n t s mentioned some changes i n r o l e s and r e l a t i o n s h i p s , the r e s e a r c h e r f e e l s t h a t a need has been i d e n t i f i e d . The mastectomy c r e a t e s 8 5 f e e l i n g s of l o s s and a n x i e t y i n many p a t i e n t s . The group would help p a t i e n t s to accept these f e e l i n g s as p a r t of t h e i r n a t u r a l adjustment and r e t u r n to normal d a i l y a c i t i v i t i e s . These needs f o r support are now o f t e n l e f t to the f a m i l y ' s r e s p o n s i b i l i t y who may not know how or be allowed to help by the p a t i e n t . I f the group were l e d by a s o c i a l worker, t h i s may hel p to broaden the r o l e of the s o c i a l worker to someone who d e a l s w i t h education as w e l l as f a m i l y and socioeconomic problems. A support group f o r b r e a s t cancer p a t i e n t s would a l s o serve t o i d e n t i f y needs f o r e x t r a c o u n s e l l i n g and help which would not be i d e n t i f i e d through socioeconomic problems on the admission forms of l o c a l p a t i e n t s . 8. A long-range demonstration and r e s e a r c h p r o j e c t to v o l u n t a r i l y i n v o l v e i d e a l l y a l l primary c a r e - g i v e r s of b r e a s t p a t i e n t s , p a r t i c u l a r l y husbands, and p a t i e n t s i n an e d u c a t i o n a l program about the primary c a r e - g i v e r ' s r o l e and how one can bes t help the b r e a s t cancer p a t i e n t w i t h her unique needs f o r r e h a b i l i t a t i o n . Some e d u c a t i o n a l a d v e r t i s i n g would probably be necessary t o encourage hus-bands t o p a r t i c i p a t e . 106 FOOTNOTES 1. Katherine E l i z a b e t h Hulburt, " L i f e Change Events as They Relate to the Onset of Breast Tumors i n Women", D i s s e r t a t i o n A b s t r a c t s I n t e r n a t i o n a l , 35 (12A) (June 1975): 7651. 2. Laura S n e l l and Saxon Graham, " S o c i a l Trauma as Related to Cancer of the Breast, B r i t i s h J o u r n a l of Cancer, 25 (December 1971): 721-734. 3. Thomas P. Hackett, et a l . , " P a t i e n t Delay i n Cancer", New England J o u r n a l of Medicine, 289 (J u l y 1973): 14-20. 4. Seymour F i s h e r , "Motivation f o r P a t i e n t Delay", Archives  of General P s y c h i a t r y , 16 (June 1967): 676-678. 5. Morton Bard and Arthur Sutherland, " P s y c h o l o g i c a l Impact and I t s Treatment", P a r t IV: Adaptation to R a d i c a l Mastectomy, Cancer 8 (July-August 1955) : 656-657. 6. I b i d . 7. Darlene Pinschke, Sr., "Guardedness of Openness on the Cancer U n i t " , Nursing Research, 2 2 (November-December 1973): 484-489. 8. Aurora P. Mamaril, "Preventing Complications A f t e r R a d i c a l Mastectomy", American J o u r n a l of Nursing, (November 1974): 2000-2003. 9. G l o r i a M. F r a n c i s , "Cancer: The Emotional Component", American J o u r n a l of Nursing, 69 (August 1969) : 1677-1681. 10. Beverly V o l i c e r , " P a t i e n t s Perceptions of S t r e s s f u l Events Associated w i t h H o s p i t a l i z a t i o n " , Nursing Research, 23 (May-June 1974): 235-238. 11. Bard and Sutherland, p. 660. 12. I b i d . , p. 661 13. I b i d . , p. 662 14. I b i d . , pp. 662-663 15. M.M. Roberts et a l . , "The M o r b i d i t y of Mastectomy", B r i t i s h J o u r n a l of Surgery, 59 (1972): 301-302. 107 16. C l i n t o n V. E r v i n , " P s y c h o l o g i c a l Adjustment to Mastectomy", M e d i c a l Aspects of Human S e x u a l i t y , 7 (February 1973): 42-65. 17. John E. Healey, "Role of R e h a b i l i t a t i v e Medicine i n the Care of the P a t i e n t w i t h B r e a s t Cancer", Cancer 8 (December 1971): 1666-1671. 18. R.K. Snyderman and R.H. G u t h r i e , " R e c o n s t r u c t i o n of the Female B r e a s t F o l l o w i n g R a d i c a l Mastectomy", P l a s t i c and R e c o n s t r u c t i v e Surgery 47 (1971): 565-567. 19. A.C. Akehurst, "Post Mastectomy Morale", Lancet 2 (1972): 181-182. 20. Roberta K l e i n , "A C r i s i s to Grow On", Cancer 28 (December 1971): 1660-1665. 21. Harry S. Goldsmith and Edgardo S. Alday, "Role of the Surgeon i n the R e h a b i l i t a t i o n of the B r e a s t Cancer P a t i e n t " , Cancer 28 (December 1971): 1672-1675 22. K l e i n , p. 1661. 23. A r t h u r Peck, "Emotional Reactions to Having Cancer", CA 22 (September-October 1972): 284-291. 24. Janet P o l i v y , " P s y c h o l o g i c a l E f f e c t s o f Mastectomy on a Woman's Feminine S e l f - C o n c e p t " , The J o u r n a l of Nervous  and Mental Disease 164 (February 1977): 77-87. 25. K l e i n , p. 1662. 26. R i c h a r d Renneker and Max C u t l e r , " P s y c h o l o g i c a l Problems of Adjustment to Cancer of the B r e a s t " , JAMA 14 (March 1952): 106-123. 27. Bernard Schoenbert and A r t h u r C. C a r r , "Loss of E x t e r n a l Organs: Limb Amputation, Mastectomy and D i s f i g u r a t i o n " , i n Loss and G r i e f : P s y c h o l o g i c a l Management i n M e d i c a l  P r a c t i c e , ed. Schoenberg e t a l (New York: Columbia U n i v e r s i t y P r e s s , 1970), pp. 119-131. 28. Healey, p. 1670. 29. Sidney W e i n s t e i n , "Phantoms F o l l o w i n g B r e a s t Amputation", Neuropsychologia 8 (1970): 185-197. 30. John H. J a r v i s , "Post Mastectomy B r e a s t Phantoms", The J o u r n a l of Nervous and Mental Disease 144 (1967): 266-272. 108 31. H.P. L e i s , J r . , " S e l e c t i v e E l e c t i v e , P r o p h y l a c t i c C o n t r a l a t e r a l Mastectomy," Cancer 28 (1971): 956-961. 32. W i l l i a m M. Markel, "The American Cancer S o c i e t y ' s Program f o r the R e h a b i l i t a t i o n of the Br e a s t Cancer P a t i e n t , " Cancer 28 (December 1971): 1676-1678. 33. K l e i n , p. 1662. 34. E r v i n , p. 42. 35. A r t h u r S u t h e r l a n d and C h a r l e s Orbach, " P s y c h o l o g i c a l Impact of Cancer and Cancer Surgery, I I : Depressive Reactions A s s o c i a t e d w i t h Surgery f o r Cancer," Cancer 6 (September 1953): 958-962. 36. Norma Jean Long, "The I n i t i a l E f f e c t of Loss o f Body P a r t on Self-Esteem i n Women H o s p i t a l i z e d f o r B r e a s t Biopsy and P o s s i b l e Mastectomy," D i s s e r t a t i o n A b s t r a c t s  I n t e r n a t i o n a l 35(3-B) (September 1975): 1147-1148. 37. P o l i v y , p. 77. 38. Avery D. Weisman, "The E x i s t e n t i a l P l i g h t i n Cancer: S i g n i f i c a n c e of the F i r s t 100 Days," I n t e r n a t i o n a l  J o u r n a l o f P s y c h i a t r y i n Medicine 7 (1976-1977): 1-15. 39. Kay R. Jamison, David K. W e l l i s c h , and Robert Pasnau, " P s y c h o s o c i a l Aspects of Mastectomy, I: The Woman's P e r s p e c t i v e , " American J o u r n a l of P s y c h i a t r y 135 ( A p r i l 1978): 432-436. 40. David K. W e l l i s c h , Kay R. Jamison, and Robert Pasnau, " P s y c h o s o c i a l Aspects o f Mastectomy, I I : The Man's P e r s p e c t i v e , " American J o u r n a l of P s y c h i a t r y 135 (May 1978): 543-546. 41. Jamison e t a l , p. 432. 42. I b i d . 43. W e l l i s c h e t a l , p. 543. 44. Nancy F. Woods, " I n f l u e n c e s on Sexual A d a p t a t i o n t o Mastectomy," JOGN Nursing (May-June 1975): 33-37. 45. N e t t a W. G r a n d s t a f f , "The Impact of Brea s t Cancer on the Family," i n Br e a s t Cancer v o l . 2, ed. J.M. Vaeth (B a s e l : Karger, 1976), pp. 146-156. 46. Schoenbert, p. 120. 109 47. K l e i n , p. 1661. 48. E l i z a b e t h A n s t i c e , "Coping A f t e r Mastectomy," Nursing  Times 66 (1970): 882-883. 49. C a r l H. F e l l n e r , "Family D i s r u p t i o n A f t e r Cancer Care," American Family P h y s i c i a n 8 (October 1973): 169-172. 50. K l e i n , p. 1661. 51. O l i v e r Cope, "Has Time Come For Less M u t i l a t i n g Treatment?," P s y c h i a t r y i n Medicine 2 (1971): 263-269. 52. C.J. Margarey, "Treatment of Apparently E a r l y Breast Cancer: The Dilemma," Me d i c a l J o u r n a l of A u s t r a l i a (September 1972): 543-547. 53. Cope, p. 269. 54. K l e i n , p. 1664. 55. J . Herbert D i e t z , " R e h a b i l i t a t i o n of the Cancer P a t i e n t , " Med C l i n North Am 53 (1969): 615. 56. M. B r o o k s h i r e , "Reach t o Recovery," J . Tenn Med Assoc 67 (January 1974): 22-23. 57. Sue P a r s a l l and E l a i n e T a g l i a r e n e , "Cancer P a t i e n t s Help Each Other," American J o u r n a l o f Nursing 74 ( A p r i l 1974): 650-651. 58. " T a l k i n g Together," American J o u r n a l of Nursing 72 ( A p r i l 1972) : 682 . 59. J . Herbert D i e t z , "Commentary on 'Psychologic adjustment to Mastectomy'," M e d i c a l Aspects o f Human S e x u a l i t y 7 (1973): 65. 60. D.R. M i l l a r d et a l , "Breast R e c o n s t r u c t i o n A P l e a For Saving the Uninvolved N i p p l e , " American J o u r n a l of  Surgery 122 (1971): 763-764. 61. Akehurst, p. 182. 62. B. Aves, "Swimwear f o r the post-mastectomy p a t i e n t , " Radiography 39 (1973): 159. 63. Markel, p. 1678. 64. K l e i n , p. 1664. 110 65. Helen C. H a r r e l , "To Lose a B r e a s t , " American J o u r n a l  o f Nursing 72 ( A p r i l 1972) : 676-677. 66. C y r i l M. Worby and Raymond Babineau, "The Family Interview: H e l p i n g the P a t i e n t and Family Cope w i t h M e t a s t a t i c Disease," G e r i a t r i c s (June 1974): 83-94. 67. A l b e r t Liebman e t a l , "Family Conference i n the Care of the Cancer P a t i e n t , " The J o u r n a l of Family P r a c t i c e 2 (1975): 343-345. 68. F r a n c i s Lomas Feldman, Work and Cancer H e a l t h H i s t o r i e s :  A Study of The Experiences of Recovered P a t i e n t s (Los Angeles: American Cancer S o c i e t y , Southern C a l i f o r n i a D iv., May 1976). 69. G e r a l d F r a n c i s T o p i t z e r , "The E f f e c t of P s y c h o s o c i a l F a c t o r s on the R e h a b i l i t a t i o n of the Cancer P a t i e n t , " D i s s e r t a t i o n A b s t r a c t s I n t e r n a t i o n a l 35 (3A) (September 1975): 1821. 70. Peter Maguire, "The P s y c h o l o g i c a l and S o c i a l Consequences of Breast Cancer," Nursing M i r r o r ( A p r i l 1974): 54-57. 71. Frank W. Norman, "Problems of a General P r a c t i t i o n e r Managing Disseminated B r e a s t Cancer," Cancer 28 (December 1971): 1702-1703 72. A r t h u r Peck arid John Boland, "Emotional Reactions t o R a d i a t i o n Treatment," Cancer 40 ( J u l y 1977): 180-184. 73. Goldsmith, p. 1672-1675. 74. E r v i n , p. 75. 75. Markel, p. 1676 76. H a r r e l l , p. 676 77. J.M. Trachtenberg, Team Involvement and the Problems  I n c u r r e d , a paper presented a t the 15th Annual C l i n i c a l Conference on Progress i n the R e h a b i l i t a t i o n of the Cancer P a t i e n t , Houston Texas, 19 70, c i t e d by Roberta K l e i n , "A C r i s e s to Grow On," Cancer 39 (February 1971):-1165. 78. Lawrence Winick and Guy F. Robbins, " P h y s i c a l and P s y c h o l o g i c a l Adjustment A f t e r Mastectomy (An E v a l u a t i o n of the PMRG Program)," Cancer 39 (February 1977): 478-486. 79. I b i d . 80. W e l l i s c h , 432-436. I l l 81. Peck, p. 284-291. 82. Schoenbert and C a r r , p. 119-131. 83. Peck, p. 284-291. 84. Schoenbert and C a r r , p. 119-131. 85. Roberts e t a l , p. 301-302. SELECTED BIBLIOGRAPHY Bernay, T. Elements of a P s y c h o l o g i c a l P r o f i l e of the Cancer P a t i e n t i n R a d i a t i o n Therapy: I m p l i c a t i o n s . . . Ann Arbor Michigan: U n i v e r s i t y M i c r o f i l m s I n t e r n a t i o n a l , 1976. Bowen, Murray. "The Use of Family Theory i n C l i n i c a l P r a c t i c e . " Comparative P s y c h i a t r y . 7 (1966) : 345-373. B u t l e r , Ada. "Breast Cancer." The Canadian Nurse.72 (June 1976): 17-22. C r a i g , Thomas J . "The Q u a l i t y of S u r v i v a l i n B r e a s t Cancer: A c a s e - c o n t r o l comparison." Cancer.33 (May 1974): 1451-1457. The Impact Cost and Consequences of C a t a s t r o p h i c I l l n e s s on  P a t i e n t s and F a m i l i e s . New York: Cancer Care, Inc. and N a t i o n a l Cancer Foundation, Inc., March 1973. Jackson, D. "On the Question of Family Homeostasis." P s y c h i a t r i c Q u a r t e r l y Supplement.31 (1957): 79-86. Johnson, Sherry W. "Role of the M e d i c a l Oncology S o c i a l Worker." A r i z o n a M e d i c i n e . ( A p r i l 1977): 257-259. Kaplan, David M.; G r o b s t e i n , Rose; and Smith, Aaron. " P r e d i c t i n g the Impact of Severe I l l n e s s i n F a m i l i e s . " H e a l t h and S o c i a l Work.1 (August 1976): 71-82. Ushner, Rose. B r e a s t Cancer: A P e r s o n a l H i s t o r y and I n v e s t i g a t i v e Report. New York: Harcourt, Brace, Javanovich, c. 19 75. Magarey, C h r i s t o p h e r J . and Todd, Peter B. "The Doctor and the P a t i e n t i n E a r l y B r e a s t Cancer D i a g n o s i s . " A u s t r a l i a n Family P h y s i c i a n . 6 (March 1977): 243-244, 248-249, 251. Priestman, T . J . and Baum, M. " E v a l u a t i o n o f Q u a l i t y o f L i f e i n Brea s t Cancer." The Lancet. 7965. ( A p r i l 1976): 899-900. Quint, Jeanne C. "The Impact of Mastectomy. American J o u r n a l  of Nursing. 63 (November 1963): 88-92. Schoenfeld, Jacob. " P s y c h o l o g i c a l F a c t o r s R e l a t e d to Delayed Return t o an E a r l i e r L i f e - S t y l e i n S u c c e s s f u l l y T r e a t e d Cancer P a t i e n t s . " J o u r n a l of Psychosomatic Research. 16 (February 1972): 41-46. 113 Smith, L a r r y and McNamara, James. " S o c i a l Work S e r v i c e s f o r R a d i a t i o n Therapy P a t i e n t s and T h e i r F a m i l i e s . " H o s p i t a l Community P s y c h i a t r y . 28 (October 1977): 752-754. 114 APPENDIX A Dear A r e s e a r c h p r o j e c t to d i s c o v e r some of the experiences and needs of new b r e a s t cancer p a t i e n t s t o the A. Maxwell Evans C l i n i c and t h e i r f a m i l i e s i s being undertaken under the auspices of the S o c i a l S e r v i c e Department of the A. Maxwell Evans C l i n i c . We are concerned to d i s c o v e r what changes, i f any, have t o be made i n d a i l y l i v i n g and p l a n n i n g f o r p a t i e n t s and t h e i r f a m i l i e s . At the presen t time there i s very l i t t l e known i n t h i s area and, of course, such i n f o r m a t i o n i s e s s e n t i a l f o r the p l a n n i n g of s e r v i c e s f o r p a t i e n t s . We are ask i n g you to help us a c q u i r e t h i s i n f o r m a t i o n and, t h e r e f o r e , would l i k e to i n t e r v i e w you and a member of your f a m i l y i n separate s e s s i o n s , r e g a r d i n g your e x p e r i e n c e s . Of course, a l l i n f o r m a t i o n i s c o n f i d e n t i a l . We w i l l be c o n t a c t i n g you by telephone w i t h i n the next week to arrange appointment times and hope you w i l l be i n t e r e s t e d i n p a r t i c i p a t i n g w i t h us. Yours t r u l y , APPENDIX C PATIENT INFORMATION FOR RESEARCH PROJECT (given to O u t - P a t i e n t d o c t o r s to f i l l out f o r researcher) NAME ADDRESS '  PHONE NUMBER — PRIMARY CARE-GIVER . DIAGNOSIS : . . — PROGNOSIS . STAGE_ . TREATMENT TO DATE OR SCHEDULED FOR THE FUTURE: TYPE DATE SURGERY . CHEMOTHERAPY — RADIOTHERAPY ._  OTHER 117 APPENDIX D TELEPHONE CONTACT TO ARRANGE INTERVIEW TIME (with people who gave p r i o r consent) H e l l o Mrs. . This i s Margot Jessup c a l l i n g . Did Dr. t e l l you about my study w i t h new mastectomy p a t i e n t s ? I am c a l l i n g to see i f you would l i k e to p a r t i c i p a t e i n t h i s study? Do you have any questions about t h i s study or about myself? Have you t a l k e d the study over w i t h your (primary c a r e - g i v e r ) ? Would he/she l i k e to p a r t i c i p a t e also? I would l i k e to t a l k w i t h you both, i n d i v i d u a l l y , i f t h i s i s convenient w i t h you. What time would be the best to in t e r v i e w you and your (primary c a r e - g i v e r ) ? Would you l i k e to be interviewed at your home or another place (e.g., C l i n i c a f t e r 4:30 p.m., U.B.C. u n t i l 5:00 p.m., or i n t e r v i e w e r ' s home)? Thank you very much. See you on . Bye. APPENDIX E INTRODUCTION (to be read by the i n t e r v i e w e r to the interviewee) The C l i n i c i s i n t e r e s t e d i n l e a r n i n g more about the changes t h a t you see i n your l i f e s i nce you found out that you have breast cancer. You can help us t o improve s e r v i c e to other p a t i e n t s who are newly diagnosed and t h e i r f a m i l i e s . You and your f a m i l y ' s help are very important to us. The changes we are t h i n k i n g about have to do w i t h work, place of residence, changes i n y o u r s e l f and fa m i l y r e s p o n s i b i l i t i e s , as w e l l as new concerns you and your f a m i l y may be having at t h i s time. In p a r t i c i p a t i n g i n the i n t e r v i e w , you are not req u i r e d to answer any questions w i t h which you are not comfortable. Schedule I - The P a t i e n t Interview Schedule Note: Section IV of P a t i e n t Interview i s al s o Schedule I I - The Primary Care-giver Interview General Information 1. Name: 2 . Address: 3. M a r i t a l Status: Years Married: 119 4 . Members i n Immediate Family and Age and Employment: Name Age Present Employment Note: *Those l i v i n g w i t h p a t i e n t **Primary c a r e - g i v e r 5 . Ethnic Background and Language Spoken at Home: 6. R e l i g i o n : I Diagnosis, Treatment and Previous Experience w i t h I l l n e s s To begin t h i s i n t e r v i e w I w i l l ask a few questions about your treatment. A. Diagnosis When d i d you f i r s t know you had breast cancer? Date: What happened at t h i s time? B. Treatment Biopsy? Date: 120 Mastectomy? Date: Who t o l d you and how? 1st Appointment a t Cancer C l i n i c - Date? Previous experience w i t h cancer and other i l l n e s s e s . Have you or any f a m i l y member had any pre v i o u s experience with cancer as an i l l n e s s ? P r evious i l l n e s s e s Is your treatment complete now? Yes: No: I f "No", how much longer i s i t expected to l a s t ? Changes i n Pl a c e of Residence I would l i k e t o ask you now about your p l a c e of r e s i d e n c e . Open: Are you a r e s i d e n t of 1. For how long have you l i v e d i n the c i t y (or d i s t r i c t of ? Years: Months: 2. During the past two years have you changed your address? Yes: No: 3. Since you found out you had b r e a s t cancer have you changed your address: Yes: No: Have you made plans to do so? Yes: No: I f "Yes", was your d e c i s i o n to move i n f l u e n c e d i n any way by your d i s c o v e r y t h a t you have b r e a s t cancer? 121 I I I Changes i n Work A c t i v i t i e s Outside the Home  and Trans p o r t a t i o n Now I would l i k e to ask you about work a c t i v i t i e s outside the home and t r a n s p o r t a t i o n . A. Work A c t i v i t i e s A. Are you employed outside the home? Yes: No: B. Do you do volunteer work? Yes: (specify) No: Do you a n t i c i p a t e your treatment w i l l a f f e c t your volunteer work? Yes: (specify) No: C. I f employed outside the home: 1) What i s your job? 2) For how long have you worked at t h i s job? Years: Months: 3) Are you working now? Yes: No: a) I f "No", do you a n t i c i p a t e r e t u r n i n g to work? Yes: (When?) No: b) I f "No", does t h i s have anything to do w i t h : i ) Your present i l l n e s s ? Ye s : No : i i ) Other recent or current i l l n e s s e s of yours or f a m i l y members? Yes: No: 122 i i i ) Previous experiences w i t h cancer? Yes: No: iv ) Other? (Specify) 4) I f you are c u r r e n t l y working or a n t i c i p a t e r e t u r n i n g to work: 1) W i l l there be a change i n hours, job r e s p o n s i b i l i t i e s , work c o n d i t i o n s or income? Yes: No: a) I f "Yes", could you say more about how t h i s change may come about? i ) Has anyone i n d i c a t e d to you there may be a change? Yes: No: i i ) Do you a n t i c i p a t e you w i l l f e e l w e l l enough to continue your present job? Yes: No: i i i ) Do you f e e l these changes are i n any way a r e s u l t of your i l l n e s s ? Yes: No: B. Tr a n s p o r t a t i o n Do you d r i v e a car? Yes: No: a) I f "Yes", are you able to d r i v e now? Yes: No: b) I f "No", does someone d r i v e you? Yes: No: i ) I f "Yes", who? 123 c) What t r a n s p o r t a t i o n do you have to your treatments at the Maxwell Evans C l i n i c ? IV New Family Concerns, Roles and R e s p o n s i b i l i t i e s Note: This Section i s a l s o Schedule I I - The Primary Care-Giver Interview I would now l i k e to ask about any e f f e c t s t h a t f i n d i n g out you (or your spouse, daughter, mother, etc.) has breast cancer may have had on fa m i l y a c t i v i t i e s and r e s p o n s i b i l i t i e s as w e l l as new concerns you and your f a m i l y may be having at t h i s time. A. Major Concerns and Perception of Changes 1. In ge n e r a l , could you t e l l me the main concerns you and your f a m i l y have at t h i s time, since you found out (or your spouse, daughter, mother) has breast cancer? 2. Since the d i a g n o s i s , what are the most important changes, i f any, you have no t i c e d i n your fam i l y ? B. P r a c t i c a l Changes i n Family Roles and R e s p o n s i b i l i t i e s We have a l i s t of p r a c t i c a l changes which people have of t e n experienced. We wondered i f any of the f o l l o w i n g changes apply to you? A. Please i n d i c a t e by w r i t i n g i n " A l l " , "Most", "Some" or "None", the share of r e s p o n s i b i l i t i e s of each f a m i l y member and others before the d i a g n o s i s . For "children" and "others" please i n d i c a t e name as w e l l as the share of r e s p o n s i b i l i t y . 124 TABLE A: BEFORE DIAGNOSIS P a t i e n t Spouse C h i l d r e n Other 1. E a r n i n g Income 2. S i t t i n g down to pay b i l l s 3. Washing d i s h e s 4. Meals 5. House c l e a n i n g 6. Shopping ( G r o c e r i e s ) ( S u p p l i e s ) 7. Yard work 8. V o l u n t e e r work 9. Making arrangements f o r s o c i a l v i s i t s f o r the f a m i l y 10. Other Is there some area of change i n r e s p o n s i b i l i t i e s t h a t i s not on t h i s t a b l e ? Yes: No: I f "Yes", pl e a s e add i t to the t a b l e as "Other". B. Please i n d i c a t e by " A l l " , "Most", "Some" or "None" the share of r e s p o n s i b i l i t i e s of each f a m i l y member and others a f t e r the d i a g n o s i s . For " C h i l d r e n " and "Others" pl e a s e i n d i c a t e name as w e l l as share of r e s p o n s i b i l i t y . 125 TABLE B: AFTER DIAGNOSIS P a t i e n t Spouse C h i l d r e n Others 1. E a r n i n g Income 2. S i t t i n g down to pay b i l l s 3. Washing d i s h e s 4. Meals 5. House c l e a n i n g 6. Shopping ( G r o c e r i e s ) ( S u p p l i e s ) 7. Yard work 8. V o l u n t e e r work 9. Making arrangements f o r s o c i a l v i s i t s f o r the f a m i l y 10. Other 3. Do you f e e l you w i l l be able to c a r r y on your r e g u l a r household r e s p o n s i b i l i e s and chores? The same as b e f o r e the d i a g n o s i s ? N e a r l y as w e l l ? Not as w e l l ? 4. I f changes were noted i n the above t a b l e : a) How concerned are you r i g h t now about each of these changes? Not a t a l l ? Somewhat? A g r e a t d e a l ? b) Are you concerned about the above r e s p o n s i b i l i t i e s : More: The Same: or Less: than b e f o r e your w i f e ' s , e t c . (or your) d i a g n o s i s ? I f more i s t h i s concern connected to your w i f e ' s , e t c . (or your) i l l n e s s ? Yes: No: 5. Could you t e l l me which of the f a m i l y changes we have t a l k e d about i s of most concern to you now? Next? E t c . Services Received and Services Requested Now I would l i k e to say a word about s e r v i c e s . 6. Have you or your f a m i l y had any of the f o l l o w i n g s e r v i c e s : ( I f "Yes", name s e r v i c e , who provided t h i s s e r v i c e and when) a) Transportation:__ b) Household help:_ c) Information s e r v i c e s : d) C o u n s e l l i n g : I n d i v i d u a l : Family: e) Groups w i t h other p a t i e n t s and f a m i l i e s : f) Other: 7. Did you r e c e i v e these s e r v i c e s when you wanted them? Yes: No: 8. Would any of the above s e r v i c e s be h e l p f u l to you now? Yes: No: I f "Yes", which s e r v i c e would be most h e l p f u l ? Next? Etc . 127 V Changes i n R e l a t i o n s h i p s w i t h Family and F r i e n d s Now I would l i k e t o t a l k about any e f f e c t s t h a t f i n d i n g out t h a t you had b r e a s t cancer might have on your r e l a t i o n s h i p s with your f a m i l y and f r i e n d s . 1. Since you found out t h a t you have cancer do you f i n d t h a t your r e l a t i o n s h i p s have changed wi t h any of the f o l l o w i n g : Yes No Spouse C h i l d Parent Doctors F r i e n d s R e l a t i v e Other (Specify) a) I f "Yes" c o u l d you t e l l me any more about t h i s ? 2. Do you see any more or l e s s of your f r i e n d s now? More: L e s s : About the same: a) Who u s u a l l y i n i t i a t e s these c o n t a c t s : Spouse: S e l f : F r i e n d s : Other: i ) Is t h i s a change? Yes: No: i i ) I f "Yes" cou l d you t e l l me more about i t ? 3. I f "Yes" to any change above are you concerned or worri e d about these changes? A g r e a t d e a l : Some: Not a t a l l : 128 a) I f concerned are you worried about these changes: More: The same: or Less: than before diagnosis? Have you been able to handle these changes without s e r i o u s d i f f i c u l t y ? Yes: No: 4. Do you f e e l your own behaviour has changed, e.g. more i r r i t a b l e , more c h e e r f u l toward any of the f o l l o w i n g : Yes No Spouse C h i l d Parent Doctors Friends R e l a t i v e s Other (Specify) a) I f "Yes" could you t e l l me any more about t h i s ? i ) To what extent do you see these changes as connected to your i l l n e s s ? A great d e a l : Somewhat Not at a l l : i i ) Do you have any concern about these changes i n your behaviour? No concerns: Some: A great d e a l : I would now l i k e to t a l k about who has helped you deal w i t h the kinds of changes we have been d i s c u s s i n g i n t h i s i n t e r v i e w . 129 6. I f p o s s i b l e i n order of importance, l i s t those who help and i n d i c a t e how they help you (Do not read l i s t ) : Spouse C h i l d Parent Doctors A Maxwell Evans C l i n i c S t a f f F r i e n d s Clergyman R e l a t i v e s Other (Specify) 7. Regarding the person(s) t h i s the same person(s) the d i a g n o s i s ? Yes: No: who h e l p ( s ) you most now: i s who helped you most be f o r e (I f "No" s p e c i f y who helped most before) I f "Yes", have you n o t i c e d a change i n t h i n g s (he/she) do f o r you now? Yes: No: Changes i n F e e l i n g s about S e l f I would l i k e to ask you a few qu e s t i o n s about your f e e l i n g s about y o u r s e l f . 1. How much would you say your f e e l i n g s about y o u r s e l f have changed toward any o f the f o l l o w i n g : a) f e e l i n g s of p e r s o n a l a t t r a c t i v e n e s s Unable to say Not a t A l l Somewhat A g r e a t d e a l b) f e e l i n g s of being competent w i t h i n and o u t s i d e the home c) a b i l i t y to be independent 130 d) f e e l i n g s toward f u l f i l l i n g o t h e r s ' e x p e c t a t i o n s and being r e s p o n s i b l e e) f e e l i n g s of being able to maintain p r e s e n t l e v e l o f income and l i v i n g c o n d i t i o n s f) other ( s p e c i f y ) I f somewhat or a g r e a t d e a l , which of the above concerns you the most? Next? 2. Of a l l your concerns which we have mentioned i n t h i s i n t e r v i e w , what would you most l i k e h e lp w i t h at t h i s time? T h i s q u e s t i o n n a i r e i s t o help the Maxwell Evans C l i n i c improve i t s s e r v i c e to p a t i e n t s and f a m i l i e s . 3. Would you l i k e t o add any f u r t h e r comments? Do you have any q u e s t i o n s you wish to ask me? Thank you very much f o r your p a r t i c i p a t i o n . 

Cite

Citation Scheme:

        

Citations by CSL (citeproc-js)

Usage Statistics

Share

Embed

Customize your widget with the following options, then copy and paste the code below into the HTML of your page to embed this item in your website.
                        
                            <div id="ubcOpenCollectionsWidgetDisplay">
                            <script id="ubcOpenCollectionsWidget"
                            src="{[{embed.src}]}"
                            data-item="{[{embed.item}]}"
                            data-collection="{[{embed.collection}]}"
                            data-metadata="{[{embed.showMetadata}]}"
                            data-width="{[{embed.width}]}"
                            data-media="{[{embed.selectedMedia}]}"
                            async >
                            </script>
                            </div>
                        
                    
IIIF logo Our image viewer uses the IIIF 2.0 standard. To load this item in other compatible viewers, use this url:
https://iiif.library.ubc.ca/presentation/dsp.831.1-0094254/manifest

Comment

Related Items