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.

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.,  University  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 in THE FACULTY OF GRADUATE  STUDIES  (School of Social Work) We  accept this to  thesis  the required  as c o n f o r m i n g standard  THE UNIVERSITY OF BRITISH COLUMBIA August, (2)  197 8  M a r g o t Anne J e s s u p , 1978  In  presenting  an  advanced degree  the I  Library  further  for  this  shall  agree  scholarly  by  his  of  this  written  at make  that  thesis  partial  it  freely  permission  for  It  is  financial  for  gain  British  / \ L A C \ iA--^  of  Columbia,  British  Columbia  for  extensive by  shall  of  of  of  the  understood  permission.  University  fulfilment  available  p u r p o s e s may be g r a n t e d  2075 Wesbrook Place Vancouver, Canada V6T 1W5  Date  in  the U n i v e r s i t y  representatives.  Department  The  thesis  requirements  reference copying  Head o f  that  not  the  of  I  agree  and this  be a l l o w e d  or  that  study. thesis  my D e p a r t m e n t  copying  for  or  publication  w i t h o u t my  ABSTRACT  The  purpose of  this  s o c i o e c o n o m i c n e e d s and cancer p a t i e n t s  and  about s e l f .  The  the  A.  the  d i r e c t i o n of  their  patient's  sample c o n s i s t e d  available at  the  the  In  the  form f o r the  about the  this  t o new  under  study,  Columbia. breast  Clinic  patients to  i n May,  the  1978  primary  for  the  expand and  priorize  concerns.  The  designed  needs not  defined  work a c t i v i t i e s  responsibilities,  primary were  sample  i n S t a g e s 1,  r e s p o n d e n t s an  S o c i o e c o n o m i c change was  14  2,  f o r the An  3 and  open-ended  covered  greatest by  opportunity  i n terms o f  outside  relationships with  the  4.  patient  primary care-givers'  identify  to give  residence,  and  primary care-givers  cancer  and  t o p i c s and  of  patients  primary care-giver.  scheduled  and  Patients  interview.  s c h e d u l e was  c o n c e r n s were i n c l u d e d  roles  New  patients'  time of  interview  a shorter  place  with  treatment centre  restricted  o f 16  patients with breast One  in  feelings  i n co-operation  a cancer  r e f e r r e d to the  of  question  of  the Cancer C o n t r o l Agency o f B r i t i s h  Two  included  breast  rehabilitation.  care-givers.  and  conducted  patient's  were f a m i l y members most r e s p o n s i b l e  The  not  s t u d y was  primary care-givers.  care-givers  the  a g r o u p o f new  r e l a t i o n s h i p s and  s c o p e o f t h i s s t u d y was  cancer p a t i e n t s  to explore  families with consideration  Maxwell Evans C l i n i c ,  The  and  concerns of  their  c h a n g e s i n r o l e s and  s t u d y was  to  changes  home,  family  and  family  friends,and The  f e e l i n g s about  self.  f i n d i n g s i n d i c a t e d t h a t the  change was  i n f a m i l y r o l e s and  area  of  relationships.  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 t o t h e some a n x i e t i e s c o n c e r n i n g  their  new  r o l e as  greatest Most  primary  interviewer  primary  care-giver.  Some p r i m a r y 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  tion  a rehabilitative  a b o u t how  patient.  to create  p a t i e n t s expressed  support  s e r v i c e s and  significant being  and  ability  The and  which a f f e c t to  team and  recover.  about . the patient's  for  the  Clinic.  improving  a t t i t u d e s of sense of  makes some r e c o m m e n d a t i o n s f o r s e r v i c e s f o r the  well-  specialized social  The  recommendations i n c l u d e and  d e v e l o p new  enhancing  consideration  the  families recognize  patient  the  suggestions  the  recover.  supportive  a cancer c l i n i c .  help  o f f e r e d ideas  researcher  developing  the m e d i c a l in  others  a number o f  informa-  environment f o r  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 t o w a r d  Several  about  of  s e r v i c e s department approaches  r o l e s to help  the  to  iv TABLE OF CONTENTS Page T I T L E PAGE  i  ABSTRACT  i i  TABLE OF CONTENTS  iv  L I S T OF TABLES  v i i  ACKNOWLEDGEMENTS INTRODUCTORY Chapter  I  viii  QUOTE  ix  INTRODUCTION  . .  1  Chapter I I  REVIEW OF THE LITERATURE  Chapter I I I  THE PROBLEM FORMULATION  3 20  1.  The R a t i o n a l e  2.  The S o c i a l Work P r o b l e m  3.  The P u r p o s e o f t h e S t u d y  22  4.  The R e s e a r c h P r o b l e m  23  5.  Working D e f i n i t i o n s  24  6.  Value Assumptions  25  7.  I n d e p e n d e n t V a r i a b l e s W h i c h May A f f e c t P e r c e p t i o n s o f S o c i o e c o n o m i c Change and C o n c e r n s  26  Patient 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 Plan; S e r v i c e s Received P r i o r t o I n t e r v i e w ; Time I n t e r v i e w e d  26  Persons Concerned With T h i s  28  8. Chapter  IV  f o r t h i s Study  20  i n Need o f R e s e a r c h  .  Study  DATA COLLECTION AND DESIGN  . . . .  21  31  1.  Design Considerations  31  2.  S a m p l i n g C o n s i d e r a t i o n s and D e s i g n  32  3.  Confidentiality  36  Instrument Devised  for this  Study  . . .  Major Source o f Data Administration Schedule: Interviewing  of the  Interview  The P r e - t e s t Procedure  Data A n a l y s i s Design r V  STUDY FINDINGS  Introduction  - Problems i n Sampling and D a t a 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  .  . .  D i a g n o s i s T r e a t m e n t and P r e v i o u s Experience with I l l n e s s Place  of Residence  Work A c t i v i t i e s o u t s i d e and T r a n s p o r t a t i o n Changes i n F a m i l y and R o l e s .  Changes  .  Responsibilities  Changes i n R e l a t i o n s h i p s Family  t h e Home  with  and F r i e n d s i n Self  D e g r e e o f C o n c e r n and Amount o f Change Other F i n d i n g s I n d e p e n d e n t V a r i a b l e s Which Seemed t o I n f l u e n c e Perceptions o f S o c i o e c o n o m i c Change and C o n c e r n s  vi Page Chapter  VI  SUMMARY CONCLUSIONS AND RECOMMENDATIONS  . . .  98  1.  Summary  98  2.  Suitability  3.  Conclusions  102  4.  Recommendations  103  o f the Instrument  . . .  100  FOOTNOTES  106  BIBLIOGRAPHY  1  1  2  APPENDIX A  114  APPENDIX B  115  APPENDIX C  116  APPENDIX D  117  APPENDIX E  118  vii L I S T OF TABLES  Table  Table  Table  I  II  III  STAGE OF CANCER OF PATIENTS INTERVIEWED FAMILY ROLES AND RESPONSIBILITIES BEFORE DIAGNOSIS FAMILY ROLES AND AFTER DIAGNOSIS  Page  4  3  6  9  7  0  RESPONSIBILITIES  viii ACKNOWLEDGEMENT S  The  a u t h o r wishes t o thank Dr. B a l l a n t y n e ,  o f t h e New P a t i e n t s C l i n i c ,  Director  (a p a r t o f t h e Out P a t i e n t s  Department) and Mrs. B e t t y - J a n e N o r r i s , D i r e c t o r o f t h e S o c i a l Services  D e p a r t m e n t a t t h e A. M a x w e l l E v a n s C l i n i c ,  invaluable help Special  i n supporting  project at the C l i n i c .  t h a n k s a l s o goes t o D r . J o h n C r a n e and M r s . E l a i n e  Stolar  a t the School  design  and d a t a A  o f S o c i a l Work, U.B.C. f o r h e l p i n g  i n the  analysis.  s p e c i a l t r i b u t e goes t o t h e l a t e D r . J o e L a g e y who  t h r o u g h h i s own i l l n e s s w i t h of  this  for their  f a m i l y members s u p p o r t  researcher.  cancer perceived  and d i s c u s s e d  this  the importance concept with the  "I  think  already,  I'm u s e d  t o h e r mastectomy  b u t maybe I ' l l wake up i n  t h e m i d d l e o f t h e n i g h t and wonder what the  h a s happened  t o us.  Is this  b e g i n n i n g o f t h e end?"  "Talking  Together", American J o u r n a l o f N u r s i n g . 72 ( A p r i l 1972):682.  1 Chapter  1  S O C I O E C O N O M I C CONCERNS AND THE BREAST CANCER P A T I E N T  Introduction "Breast cancer,  t h e l e a d i n g cause o f death  b e t w e e n t h e a g e s o f 39 a n d 4 4 , i s s t i l l medical  profession", said  spokesman Breast in the  Canada  affects  conference  approximately  Registry.  However,  r e m a i n s unknown and s u r g e o n s either  t h e simple mastectomy, i s s t i l l  of  treatment.  surgical  breast cancer The  mastectomy  impact  team  o f a breast cancer  a t t h e A. M a x w e l l  family.  The p s y c h o l o g i c a l impact upon  situation  following  cancer  radical method  and support  and p o s t issue.  d i a g n o s i s and subsequent and by t h e  Evans C l i n i c  as an  emotional  o f t h e p a t i e n t and h e r  o f m a s t e c t o m y may  have  a few o r a l l f a c e t s i n t h e p a t i e n t ' s  life. The  from  methods.  the best  a current  i n the literature  i n the total  effects  considered  needs o f p r e - s u r g i c a l  upheaval  traumatic  received  on t r e a t m e n t  p a t i e n t s remains  life  1 0 0 women  designing rehabilitation  i s now r e c o g n i z e d  professional  figures  Manitoba.  mastectomy, t h e m o d i f i e d  or  programs t o meet t h e t o t a l  i n Winnipeg,  t h e cause o f breast  differ  by t h e r a d i c a l  Therefore,  f o r the  7 out o f every  a c c o r d i n g t o 1975 u n p u b l i s h e d  B.C. C a n c e r  Surgery,  a mystery  a Canadian Medical A s s o c i a t i o n  a t t h e 1978 c a n c e r  cancer  f o r women  exploratory descriptive  study i s  2 designed  to  look  have p r e c e i v e d since an  the  a t changes which the  i n the  diagnosis  i n v e s t i g a t i o n of  socioeconomic  of breast the  patients'  This  needs o f p a t i e n t s  and  change. and  practical  assessing further  the  present  support  families.  support  family  their  life  study w i l l  aim  to p i n p o i n t  of t h i s  s e r v i c e s to breast  the  socioeconomic  socioeconomic  changes  investigation will  planning  of  as  some o f  Maxwell Evans C l i n i c  s e r v i c e s and  involve  families' perception  s i n g l i n g out  t o t h e A.  her  r e l a t i o n s h i p s as w e l l  will  major focus  value  and  This  f a m i l i e s which a r i s e from  I t i s hoped t h a t  c o n c e r n s as  direct  focus  and  s i t u a t i o n of  cancer.  s o c i o e c o n o m i c c h a n g e s , r o l e s and changes i n s e l f .  patient  and  cancer p a t i e n t s  have  in  implementing and  their  3 Chapter  II  LITERATURE REVIEW  Introduction There i s a growing on  the  the  emotional  p a t i e n t and  literature and  has  impact of b r e a s t her  contained  family.  d e a l t with  controversies  therapies.  The  i n t e r e s t i n the m e d i c a l  over  Until  predisposing The  breast  stressful current  life  aspects  defining  s e r v i c e s and  patients'  c a n c e r upon t h e  breast  now  and searched  been p l a c e d  very  on  their  approaches to i n t e r v e n t i o n .  for  the  mastectomy and  little  f a m i l y and  t h i s chapter  p e r t a i n i n g to the c a n c e r and  literature  professional roles required  impact of b r e a s t  with  rehabilitation  the p e r s o n a l i t y  c a n c e r and  There i s s t i l l  literature  programs,  events.  of breast  purpose of  upon  medical  screening  cancer p a t i e n t , or  needs.  The  r e c e n t l y , the  psychosomatic  e m p h a s i s has  psychosocial the  mastectomy  s u r g i c a l t r e a t m e n t and  s t u d i e s which d e s c r i b e the  and  early detection,  p s y c h i a t r i c and  psychodynamics of  cancer  literature  t o meet  w r i t t e n on significant  i s t o review the  on  the others.  medical  psychosocial  experience  o f women  f a m i l i e s and  to look  current  at  3a  I  Predisposing  Stress  Factors  T h e r e have been some q u e s t i o n s influence  of social  of breast  cancer.  r a i s e d about t h e  s t r e s s and p e r s o n a l i t y i n t h e e t i o l o g y Katherine  Hurlburt  conducted  study  e x p l o r i n g t h e r e l a t i o n s h i p between l i f e  using  t h e SRE s c a l e o f s t r e s s f u l  diagnosis a cancer  of breast clinic.  to  significant  cope w i t h  life  c o u n s e l l i n g might very preventive a study  health  with  r e l a t i o n s h i p was f o u n d ,  energy t h a t i s r e q u i r e d  intervention or r e f e r r a l  w e l l have i m p o r t a n t  f o r women."''"  Snell  and Graham  t o i n v e s t i g a t e traumatic  deaths, separations,  for  implications f o r  352 women and 670 c o n t r o l s w i t h  of the g e n i t a l i a  recognized  change e v e n t s i n women's l i v e s a s  i n terms o f a d a p t i v e  them, t h e i r  events  e v e n t s and t h e  "that i f physicians generally  understood these  being  change  i n 84 women r e c e n t l y r e f e r r e d t o  A l t h o u g h no c a u s a l  H u r l b u r t proposed and  cancer  recent  a descriptive  conducted  other  diseases  i n c i d e n t s , e.g.  d i v o r c e , unemployment and i l l n e s s  during  2 the  5 years  research social  prior  failed  to the breast  also to find  s t r e s s o r s and b r e a s t  cancer  diagnosis.  This  a c a u s a l r e l a t i o n s h i p between cancer.  Diagnosis  A.  Delay Hackett  conducted a study  with  2 78  patients  coming  4 to a h o s p i t a l f o r diagnosis the  educational  diagnosis.  background.  perception  using  that  explored  i n consulting  i n k b l o t t e s t s and p e r s o n a l  Twenty-eight c a n c e r were  interviews.  i n b o t h s a m p l e s t h e women who were most  medical advice.  were l i k e l y  t o delay  longest  The p r o b l e m o f p e r s u a d i n g p e o p l e  e a r l y m e d i c a l c o n s u l t a t i o n was c o n s i d e r e d than p r o v i d i n g  B.  little  a p h y s i c i a n and  c a n c e r and 34 w i t h c e r v i c a l  self-actualized  educational  What To T e l l The  cancer  the relationship  o f "boundary d e f i n i t e n e s s . "  women w i t h b r e a s t  and  came f o r  now c o n c e r n s w h e t h e r  Fisher  between t h e d e g r e e o f d e l a y  found  t h e more a d v a n c e d  programs a c t u a l l y r e a c h t h e p e r s o n w i t h  educational  studied  that  background, t h e sooner t h e p a t i e n t  Some s p e c u l a t i o n  education  their  and found  Fisher  independent  i n seeking t o seek  t o be more  complex  resources.  The P a t i e n t  i s s u e o f how t o t e l l  concern t o physicians  the patient  and s u r g e o n s h e l p i n g  i s of great  breast  cancer  patients. Bard prepared preting too  and S u t h e r l a n d  wrote  t o spend c o n s i d e r a b l e  diagnosis  that  physician  should  time w i t h t h e p a t i e n t  t h e need f o r s u r g e r y . . . .  strongly  "the  be  inter-  I t c a n n o t be e m p h a s i z e d  an h o u r o f p e r m i s s i v e  d i s c u s s i o n when t h e  i s e s t a b l i s h e d may be more a d v a n t a g e o u s i n t h e  management o f t h e p o s t psychotherapy during  mastectomy p a t i e n t  and a f t e r  t h a n months o f  convalescence....  must a l w a y s be s t a r t e d between t e r r i f y i n g  A course  o b s c u r a n t i s m and  5  equally  terrifying  authors  feel  information in  and unabsorbable  that  approaching  the patient  t h a n he wants t o h e a r  the patient's  coping  information."^  These  to accept  can lead  more  to great  problems  ability.  However, P i n s c h k e  found  that  nursing  most e f f e c t i v e i n an environment o f openness  intervention and honest  was  sharing  7  about diagnoses felt  that  patient's  prior her  cancer  a nurse's w i l l i n g n e s s t o l i s t e n confidence  The Francis  and prognoses w i t h  prior to  diagnosis  felt  that  ability  of cancer  plus  to adjust  will  Mammaril  promote t h e  surgery.^ i s often  the patient's  to diagnosis  patients.  coping  adequate  received  with  resources  support  and  systems w i l l  t o t h e shock o f d i a g n o s i s  often  shock. skills determine followed  9  by  denial, anxiety,  Ill  The H o s p i t a l Volicer  rank  i n order  stressful named  as  The  fora life event,  threatening  admission  event that  i m p l i c a t i o n of these  p o s s i b l e mastectomy some  patients.  their  who w e r e a s k e d t o  perceptions  i n t h e h o s p i t a l experience."*"^  and t h e p o s s i b i l i t y  most s t r e s s f u l  depression.  a group o f p a t i e n t s  of degree of impact,  admission  third,  and/or  Experience  studied  events  most s t r e s s f u l  regression  of disfigurement  could  as t h e second  l o s s o f an  organ  as the s i x t h  occur with h o s p i t a l i z a t i o n .  findings  c a n be v e r y  Respondents  disease  f o rpossible  of  i s that  stressful  hospitalization for on t h r e e  counts f o r  6 IV  E m o t i o n a l R e a c t i o n s t o Mastectomy Bard and S u t h e r l a n d  of  28 a n d 68 who were i n t e r v i e w e d  and  found  the response  to t h e time b e f o r e , first or  studied  followed  during  a n t i c i p a t o r y stage,  "panicky".  their  patient feel  said:  surgery,  d e f i n i t e stages  reported  "I feel  of the ordeal,  j u s t t a l k i n g about i t .  other  relating  In the  f e e l i n g "shocked"  scared  I know i t h a s  the operation. I'm s c a r e d  My  but I  women, body a t t r a c t i v e n e s s h a s been t h e b a s i s  feelings of self-worth said:  and a t t r a c t i v e n e s s .  " I f t h e y have t o t a k e my b r e a s t  a s t h o u g h I were l o s i n g p a r t  disfigured. of  and a f t e r  s a y why. For  of  three  a l l patients  t o be done, b u t I'm a f r a i d  can't  before  or a f t e r the operation.  One p a t i e n t  hands a r e s h a k i n g  20 women between t h e ages  I'm n o t a f r a i d  of myself,  l o s i n g that part of myself.  I know t h i s  o f f , I would  that  of the operation.  Another  I ' d be  I'm more  afraid  h a s t o be t a k e n 12  care  of but I'd r a t h e r  d i e t h a n t o have them t a k e i t o f f . "  T h e s e women o f t e n as  have p a i n f u l f a n t a s i e s o f t h e m s e l v e s  d i s f i g u r e d p e r s o n s i n t h e community.  expressed  a fear of losing a breast  r e l a t i o n s h i p w i t h her husband: sense. about  I t seems l i k e  you a r e s e x l e s s .  the second  to her ina  T h a t ' s why I w o r r y  I feel  "operative  patient  i t ' s disgusting  i t w o u l d be one o f 13  t h a t he h a s t o s l e e p w i t h a s e x l e s s During  project  as a t h r e a t  "I f e e l  h i s (husband's) r e a c t i o n .  disgust,  Another  woman."  p h a s e " t h e p a t i e n t may  some o f h e r f e a r and h o s t i l i t y  toward h o s p i t a l  staff.  Her  view of discharge  being  ready t o face  the  third  and  vulnerable  may b e s e e n w i t h  others,  "convalescent  a n x i e t i e s about not  particularly  stage"  her family.  some p a t i e n t s  feel  During  depressed  14 report  that  t o a n t i c i p a t e d embarrassments.  51% o f t h e i r  Roberts  sample o f mastectomy p a t i e n t s  eta l  said  15 they were anxious o r depressed. Akehurst are  say the predominant emotional  a n d G o l d s m i t h m e n t i o n many  mastectomy: fears  fear  20 usually  o f major  o f changes  relationships.  V  reactions  Synderman and t o mastectomy  a sense o f l o s s o f f e m i n i n i t y and d i s f i g u r e m e n t .  Klein  and  E r v i n , Healey,  fears  surgery,  associated  fears  '  and  '  with  about having  i n interpersonal marital  '  cancer  sexual  21 '  expressed  Fear  of death  i s also  present but xs 22 c o v e r t l y xn terms o f l o s s o f b r e a s t .  Denial Peck  studied  denial  i n cancer  patients  who k n o w  their  23 diagnosis. hope g i v i n g  Their  responses  as an a d a p t i v e  P o l i v y mentions  a great  cancer patients  directly  reality,  dxsplacement of concerns,  s p e c i a l powers t o t h e p h y s i c i a n , and anger.  sees d e n i a l o f death  of  include  deal  response  to breast  o f d e n i a l was f o u n d 24  a f t e r surgery.  After  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  longer necessary. VI Age and F e e l i n g s Klein  Peck cancer.  i n breast a few months t o be no  o f Loss  feels that  age i s a f a c t o r i n a  patient's  25 interpretation  of illnesses.  The young p a t i e n t  i s forced  to  8 confront  h e r own m o r t a l i t y w h i l e  to accept  the older p a t i e n t i s forced  t h e consequences o f o l d age.  Renneker says  women a t t h e c l i m a c t e r i c a n d women a t c h i l d to  bearing  s u f f e r l o s s e s o f f e m i n i n i t y t h e most whereas  that  age seem  post-menopausal  26 women seem t o s u f f e r l e a s t .  However, S c h o e n b e r g ' s s t u d y o f  l o s s o f e x t e r n a l organs found emotional to  that the greater  investment i n her breasts  t h e more l i k e l y 27 r e g a r d l e s s o f age.  s u f f e r l o s s and d e p r e s s i o n ,  VII  Lymphedema  fears concerning lifestyle,  she was  ( F l u i d r e t e n t i o n i n arm w h i c h may r e s u l t f r o m m a s t e c t o m y o p e r a t i o n s i n v o l v i n g t h e lymph nodes)  Lymphedema was s t u d i e d  in  a woman's  by H e a l e y who f o u n d  self-consciousness  psychosocial  o f the enlarged  arm, c h a n g e s  i . e . d a n c i n g , p l a y i n g games, and d i f f i c u l t y i n 28  finding VIII  comfortable  clothes.  Phantom B r e a s t Weinstein  Sensations  who s t u d i e d  20 3 women who had m a s t e c t o m i e s 29  found o n e - t h i r d He  o f them e x p e r i e n c e d  found t h a t t h e longer  sensations  lasted.  experience  sensations  Jarvis'  a breast  phantom  sensation.  t h e c a n c e r had e x i s t e d , t h e l o n g e r t h e  Patients with earlier  l e f t mastectomies  seemed t o  than r i g h t mastectomies.  review o f the l i t e r a t u r e  on t h e b r e a s t  John  phantom  phenomenon f o u n d age a t t i m e o f m a s t e c t o m y , m a s t e c t o m y i n relation  t o menopause, lymphedema, a n d p o s t - m a s t e c t o m y  t o be t h e f o u r  statistically  significant  d i s t i n g u i s h t h e phantom b r e a s t p a t4 . i- e n t4. s . 30  findings  group from o t h e r  depression  that  mastectomy  9 IX  A m b i v a l e n c e Toward t h e R e m a i n i n g Leis  Breast  r e p o r t s t h e woman's a m b i v a l e n t  feelings  toward  31 her  remaining  sign the  breast.  On one hand t h e b r e a s t  o f f e m i n i n i t y and s e x u a l b r e a s t may be a s o u r c e  p r o b l e m by u n b a l a n c i n g X  Unanswered  remaining  symbol b u t on t h e o t h e r  o f r e c u r r e n t cancer  body  isa  hand,  and c r e a t e s a  symmetry.  Questions  Market notes t h a t t h e b r e a s t many q u e s t i o n s  cancer  w h i c h she d o e s n o t f e e l  p a t i e n t o f t e n has  are appropriate  t o ask  32 her  doctors.  bathing  suits  considerable  Questions  are available are often anxiety  common m i s c o n c e p t i o n s belief in  that cancer  by o t h e r s  left  f o r the p a t i e n t .  unanswered and c r e a t e  Klein  reports that the  which p a t i e n t s never question  always r e c u r s o r k i l l s ,  some way r e s p o n s i b l e  perceived XI  s u c h a s how t o wear a b r a and what  f o r her cancer 33 as d i s e a s e d .  include the  that the p a t i e n t i s  and t h a t she w i l l be  Depression Ervin  reports h i spersonal  experience  as a surgeon  34 working with 3 breast  mastectomy p a t i e n t s .  cancer  discovered  Ten y e a r s  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.  t h a t woman's r e c o v e r y " f r o m t h e c r i s i s  d e p e n d s a g r e a t d e a l on t h e h u s b a n d ' s s u p p o r t . " constant  i n v o l v e m e n t o f t h e husband t h r o u g h o u t  t r e a t m e n t and r e h a b i l i t a t i o n the  ago he l o s t He  o f mastectomy He now a d v o c a t e s  diagnosis,  even t o t h e p o i n t o f i n s i s t i n g  husband change h e r b a n d a g e s .  Sutherland  and O r b a c h  found  10 the d e p r e s s i o n  surrounding  surgery  f o r cancer  t o be  centred 35  on  the patient's i n t e r p r e t a t i o n  Fear  of social  activities  of the organ.  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  a r e o f t e n more a s o u r c e  disease.  P a t i e n t s who  treatment  and a f t e r  anxiety  of the value  of depression  in life  than  recurrent  have many unanswered q u e s t i o n s  effects  than d e p r e s s i o n .  of surgery,  experience  These authors  s u r g i c a l dreams w h i c h a r e o f t e n f i l l e d  about  more o f  also discuss with bizarre  posthorror  scenes. XII  Self-Esteem L o n g s t u d i e d 26 women between t h e ages o f 20-60  to  e x p l o r e the e f f e c t  of anticipated  years  and a c t u a l l o s s o f a  36 b r e a s t on l e v e l o f s e l f - e s t e e m . actual  The s t u d y  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  effect  l e v e l s m e a s u r e d by t h e T e n n e s s e e S e l f - C o n c e p t with high  s e l f - e s t e e m were  or a c t u a l breast l o s s Polivy and  self-image  (18 b i o p s y  indicate  in  subjects with  self-esteem  scale.  by e i t h e r low  Subjects  anticipated  self-esteem.  i n 15 mastectomy p a t i e n t s and two 37  and 11 s u r g i c a l  controls).  control  The f i n d i n g s  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 These  affected  on  that  a t t e m p t e d t o measure c h a n g e s i n body image, s e l f - c o n c e p t  total  groups  than  less  concluded  s e l f - i m a g e , b u t n o t u n t i l months  f i n d i n g s c o n c u r w i t h Weisman who  p a t i e n t s two months  found  after  s t r e s s was 38 f o l l o w i n g t h e mastectomy.  surgery. highest  11 XIII  E f f e c t s on M a r i t a l and Sexual Jamison, Wellisch  studies,  one w i t h  and another w i t h  were m a r r i e d  and Pasnau conducted  two  systematic  a s a m p l e o f 4 1 women t o i n v e s t i g a t e e f f e c t s  of mastectomy on sexual age  Relationships  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  a sample o f t h e i r  a n d 1 was l i v i n g  male  partners  (30  common-law) t o i n v e s t i g a t e  their  39 40 adjustment t o t h e mastectomy. women's q u e s t i o n n a i r e adjusting with  to their  "suicidal  '  The f i n d i n g s o f t h e  indicate that  situation  there  although  w a s some e m o t i o n a l  i d e a t i o n and increased  t r a n q u i l i z e r s . . . age s u p p o r t  m o s t women  were  suffering  u s e o f a l c o h o l and  systems and premorbid  functioning  may b e i n d i c a t o r s o f t h e a m o u n t a n d t y p e o f i n t e r v e n t i o n 41 needed." Counselling i sp a r t i c u l a r l y important before s u r g e r y s i n c e t h i s t i m e w a s v i e w e d b y m o s t women a s t h e p e r i o d 42 of greatest anxiety. The again  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  m o s t men w e r e  few r e p o r t e d The  authors  adjustment"  adjusting  to their  problems i n t h e i r cite  "four  nodal  i n t h e husband:  indicated  situation,  relationships with  points"  although their  i n identifying  the frequency  resumption  r e l a t i o n s h i p and t h e husband's 43 body a f t e r s u r g e r y . "  looking  a t h i spartner's  wives.  i n the  d e c i s i o n making process, of the sexual  a  "good  "involvement of partners of hospital  that  visits,  44 Woods e x p l o r e d found sexual  that  sexual  adjustment t o mastectomy.  the patient's perception  adequacy and d e s i r a b i l i t y  of her post-operative  depended on p a i n  near the  She  12 surgery,  perception  of partners  perception  of society's  Grandstaff  studied  in  a research  The  crucial  on  r e a c t i o n , and p a t i e n t ' s  standards of sexual  70 m a s t e c t o m y p a t i e n t s  project involving family  point  desirability.  and t h e i r  and m a r i t a l  families counselling.  i n t h e husband's s u p p o r t o f h i s w i f e  whether h i s a t t i t u d e toward  S c h o e n b e r t found the  greater  45  depended  t h e s c a r was p o s i t i v e o r n e g a t i v e .  support i n the m a r i t a l r e l a t i o n s h i p 46  before If  surgery,  the greater  t h e s u p p o r t a f t e r t h e mastectomy.  a woman f e e l s u n a t t r a c t i v e ,  interpreted  a s a r e j e c t i o n by t h e h u s b a n d . S c h o e n b e r t  pre-operative XIV  she may w i t h d r a w w h i c h may be  counselling  for couples before  suggests  t h e mastectomy.  The F a m i l y K l e i n mentions t h a t  t h e mastectomy may a f f e c t t h e 47  patient's  husband and f a m i l y .  about h i s w i f e ' s new  life  rejection. frightened operative  o f him.  I f t h e husband's  i s withdrawal, the wife  can  by t h e i r m o t h e r ' s o p e r a t i o n depression.  Anstice  and p o s s i b l e  says t h a t  problems so t h a t  helping  or hold  post-  t h e whole f a m i l y  they can give  her.  should  the patient 48  healing.  may i n v o l v e w o r k i n g o u t a t e m p o r a r y  housework t o h e l p help  reaction  may s e e t h i s a s  s u p p o r t i n a t i m e o f p h y s i c a l and e m o t i o n a l  of  wife's  The c h i l d r e n o f mastectomy p a t i e n t s may a l s o be  know t h e p a t i e n t ' s  Practical  concerns  e x p e c t a n c y and may be u n s u r e o f h i s  needs and e x p e c t a t i o n s  to u n c e r t a i n t y  The h u s b a n d may have  Fellner indicates that  b a c k t h e woman f r o m r e c o v e r i n g 49 emotional reaction to the patient's i l l n e s s .  regime  the family  by t h e i r own Klein  says  13 that  f a m i l i e s who w i l l  expressed  XV  may p a r t i c u l a r l y  negative  e m o t i o n t o be  impede t h e p a t i e n t ' s  progress.  50  A l t e r n a t i v e s t o Surgery The  as  not allow  literature  also looks  i n t o a l t e r n a t i v e s t o surgery  one s o l u t i o n t o t h e t r a u m a and r e h a b i l i t a t i o n  problems o f  mastectomy. Cope and M a r g a r e y d i s c u s s  a viable alternative to 51  surgery "they  i n modern h i g h  (women w i t h  voltage  irradiation.  52 '  Cope  says  breast  c a n c e r ) d o n ' t n e e d t o be r a i l r o a d e d  breast  removed".  53 into  having  XVI  Intervention  A.  their  Introduction Klein  t h e woman w i t h of her breast self-esteem  says t h a t the t h r e e breast  cancer  and a c c e p t  this  are:  rehabilitation for  o n e , she must mourn t h e l o s s  loss;  toward a s e l f - i m a g e  a c c e p t a n c e by o t h e r s ;  goals.of  two, s h e must b u i l d h e r  worthy o f a d m i r a t i o n  and t h r e e ,  she must l i v e  and  with the 54  possibility Klein  of recurrence  suggests the f i r s t  honest communication her to  others  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,  situational  i n her l i f e .  crises  and t o know what  The e m p h a s i s a p p e a r s t o be on t h e  group approach i n h e l p i n g cancer individual  o f her l i f e .  about t h e f u t u r e , h e l p i n g her t o express  f e e l i n g s to deal with tell  f o r t h e n e x t 10 y e a r s  consideration i s s t i l l  p a t i e n t s although 55 primary.  Dietz  feels  The Reach t o  R e c o v e r y P r o g r a m , a l a y o r g a n i z a t i o n b a s e d on t h e " s e l f - h e l p "  group c o n c e p t has been v e r y follow-up  support  supportive  t o women who w i s h  f r o m h o s p i t a l t o home p r o v i d e d  by  someone who h a s e x p e r i e n c e d a m a s t e c t o m y  themselves.^  Parsall  and f a m i l y  t a l k s about t h e v a l u e  of patient  groups  57 led  by p r o f e s s i o n a l s .  successful, Allied  C o u p l e s g r o u p s have a l s o  particularly  a t the Hospital  been  f o r C a n c e r and  D i s e a s e s i n New Y o r k , New Y o r k , i n a d j u s t i n g  husbands  58 t o t h e mastectomy. rebuilding external  In h e l p i n g  self-esteem,  Dietz  a p p e a r a n c e and t o t a l  the p a t i e n t with the task o f  proposes the r e s t o r a t i o n o f u s e o f t h e arm a s  instrumental  59 in  r e b u i l d i n g the patient's  offer  self-image.  o f cosmetic r e c o n s t r u c t i o n  power i n t h e p a t i e n t ' s operation, restored  before  psychological  even though t h e b r e a s t  as new/"  M i l l a r d f e e l s the surgery  has g r e a t  adjustment t o the  i s not promised  Reconstructing  the breast  t o be  i s also a  symbol t o t h e p a t i e n t t h a t t h e s u r g e o n f e e l s t h e r e 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 m e n t i o n e d a s an i s s u e in rehabilitation. A v e s w r i t e s an a r t i c l e a b o u t t h e t y p e s 62 o f swimwear a v a i l a b l e t o p o s t - m a s t e c t o m y p a t i e n t s . B. Counselling The of can  counselling  pre-operative  counselling.  be a q u e s t i o n  Klein  family  considers  literature  Markel  a n d answer p e r i o d  this  t h e importance  suggests t h i s  period  provides  interview  t o d i s p e l misconceptions.  t i m e t o be u s e d t o d i s c u s s 64  r o l e s and r e s p o n s i b i l i t i e s .  hospitalization  discusses  changes i n  H a r r e l l says t h e  an o p p o r t u n i t y  of involving  t h e f a m i l y and  h e l p i n g them t o a d j u s t t o changes.""'  Several in  treatment  Worby and  authors  stress  the v a l u e of  family  p l a n n i n g f o r the cancer p a t i e n t .  Babineau  wrote about  interview with cancer patient  involvement  The p h y s i c i a n s  the v a l u e o f the f a m i l y t o " h e l p a l l f a m i l y members 66  cope w i t h a m u t u a l l y  shared  the value of p e r i o d i c  f a m i l y case  members u t i l i z e  their full 67 support."  and  social  C.  Professional  crisis."  Roles:  Liebman  conferences  persons cancer  The S o c i a l Worker; N u r s e s ; G e n e r a l P r a c t i t i o n e r ; R a d i o l o g i s t and C a n c e r C l i n i c P e r s o n n e l ; S u r g e o n ; and t h e "Team".  of the cancer p a t i e n t .  socioeconomic  Feldman s t u d i e d 92  r e c o v e r e d from head/neck r e c t u m / c o l o n t o see  to help f a m i l y  resources i n "medical, psychologic,  S o c i a l work r e s e a r c h e x p l o r e s t h e concerns  illustrates  i f t h e r e was  and  employable  breast  work d i s c r i m i n a t i o n w i t h  ex-cancer  68 patients. and  their  Although  r e s o u r c e s be  to  see  found.  developed  to a s o c i a l  a variety  service  He  agency f o r h e l p .  of p s y c h o s o c i a l f a c t o r s had  worker i n h e l p i n g the p a t i e n t  status,  ability  emotional  of p a t i e n t s of  counselling  would not  normally  Topitzer explored  i n 80 mastectomy p a t i e n t s  predictive to adapt  t o cope w i t h o t h e r reaction  case  recommends t h a t  f o r p a t i e n t s who  i f some v a r i a b l e s  Patient's  concerns  f a m i l i e s were p r e v a l e n t , o n l y one  d i s c r i m i n a t i o n was  go  work p r o b l e m s and  value  f o r the 69  social  f o r surgery.  s t r e s s e s , (age,  t o h e r m a s t e c t o m y and  marital  family  16 r e a c t i o n s ) had  p r e d i c t i v e v a l u e a l t h o u g h more r e s e a r c h  recommended t o f u r t h e r knowledge about  the  the r e h a b i l i t a t i o n value  investigate  significant  these  findings.  was  More  psychosocial factors  o f the cancer p a t i e n t w i l l  t o the s o c i a l worker i n p l a n n i n g  be  upon  of great  rehabilitation  services. Maguire i l l u s t r a t e s psychological  and  i n case examples  some o f  i n t e r r e l a t i o n s h i p problems f a c e d  the  by .  rehabilitating He  breast cancer  recommends t h a t  crucial and  p a t i e n t s and  a nurse with  special  l i n k between t h e p a t i e n t ,  community c a r e teams.  general practitioner at every  Radiologists radiation  therapy  o f p a t i e n t s and discovered surgical clarified  and  and  this  conception proved  from  cancer  cancer c l i n i c  of  r e c o g n i z e the i n d i v i d u a l  are r e f e r r e d  themselves t o be  Peck and  the  improved  The  post-  which are  treatments, by  false  fears  Boland  for radiation  After  entirely  months l a t e r .  personnel  hospital  rehabilitation.  by m e d i c a l p e r s o n n e l .  18-36  f a m i l y , the  have many m i s c o n c e p t i o n s 72  than o n e - t h i r d judged  provide a  "her p a r t n e r a g a i n s t c a n c e r " 71  t h e i r misconceptions.  treatment  training  medical personnel involved i n  should also  p a t i e n t s who  70  families.  Norman d i s c u s s e s t h e r o l e  i n becoming  stage of i l l n e s s  the  their  .  not fewer  radiation as  60%  although  were  s t u d y recommends  free  that  s h o u l d spend time w i t h p a t i e n t s t o  e x p l o r e p o s s i b l e doubts about t r e a t m e n t . G o l d s m i t h w r i t e s about the surgeon's  role  as  central  17 to  h e l p i n g the p a t i e n t  heavy c a s e l o a d s o f t e n p r e v e n t with t h e i r  patients,  about  the p a t i e n t ' s  Ervin  routinely  and  73  cope w i t h her mastectomy. surgeons  i t i s crucial fears  and  from  that  Although  spending  the surgeon  possible effects  time know  on h e r  family.  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  f a m i l y members so t h a t he  i s aware o f t h e  patient  family  s i• *t. u a t4 . -i o n . 74  must be  Post-operative  treatment  seen  and  successful  as a u n i t  approach  and  emotional  t h e team s e r v i c e  to treating  rehabilitation  seems t o be  one  " t h e w h o l e p e r s o n " , mind  and  75  body.  Harrell  rehabilitation of  o f f e r s her p e r s o n a l account  of  her  a f t e r mastectomy t o emphasize the  t r e a t i n g b o t h t h e m e d i c a l and  importance  emotional aspects of recovery:  " P e r h a p s t h i s sounds o v e r l y d r a m a t i c b u t f o r a woman who h a s b e e n p l a c e d i n t h e s t a r r i n g r o l e i t i s a drama w i t h a f i v e y e a r r u n and v e r y l i t t l e e m p h a s i s on t h e r o l e s t h a t o u g h t to be p l a y e d . . . I f o u n d t h a t my t r i v i a l p r o b l e m s - h e a d a c h e , n a u s e a and p a i n - were treated aggressively. No one, however, b o t h e r e d t o t e l l me t h a t my c r y i n g s p e l l s were n o t u n u s u a l and t h a t t h e y w o u l d p a s s . C o n s e q u e n t l y , my c o n s t a n t w o r r y was t h a t I was h a v i n g a n e r v o u s breakdown."76  The  team a p p r o a c h  value for  i s r e p o r t e d i n the l i t e r a t u r e  i n implementing  more c o m p r e h e n s i v e  mastectomy p a t i e n t s .  t o be  of  rehabilitation  Trachtenberg d i s c u s s e s the  programs  problems  77  of  working  w i t h teams.  Rehabilitation  Group  K e t t e r i n g Centre  and  Winick  e v a l u a t e d the Post  Mastectomy  (PMRG) Team P r o g r a m a t Memmorial found  84%  of the p a t i e n t s  studied  Sloanresumed  18 normal 74%  activities  within  t h e f o u r month p o s t - o p e r a t i v e p e r i o d ;  r e t u r n e d t o work w i t h i n  t h r e e months o f t h e i r  mastectomies 78  while  13%  e x p e r i e n c e d moderate o r severe e m o t i o n a l  Winick  found  result  i n an e a s i e r  condition  that  " d o i n g a n y t h i n g t o keep b u s y " seemed adjustment.  seemed t o g r e a t l y  D.  The  affect  percent of the p a r t i c i p a n t s t o be  stress.  patient's  age  and  rehabilitation.  studied  found  this  to physical  Ninety-eight  team p r o g r a m  helpful.  Conclusion T h u s , t h e team a p p r o a c h ,  treating  the  "whole p e r s o n " ,  professionally approaches  l e d groups  and  Follow-up  use  seem t o be  to r e h a b i l i t a t i n g  literature.  involvement  of the  of s e l f - h e l p  family,  and  the c u r r e n t l y  favoured  t h e mastectomy p a t i e n t  c a r e and  identification  of  i n the  problems 79  after  treatment  i s over  i s mentioned  In c o n c l u d i n g t h i s  review,  as a c e n t r a l  the r e s e a r c h e r notes  a l t h o u g h some s o c i a l work w i t h c a n c e r p a t i e n t s was  found  in this  literature  s e a r c h , o n l y two  s p e c i f i c a l l y with breast cancer  articles  (other r e f e r e n c e s to  Moreover, the r e h a b i l i t a t i o n  f o r breast cancer p a t i e n t s  seem t o d e v e l o p  be  treatment  centres.  examples o f r e h a b i l i t a t i o n specifically  in settings  The  social  found i n  in hospitals  r e s e a r c h e r d i d not  t h e A.  Maxwell Evans  or  societies find  programs f o r b r e a s t c a n c e r  like  deal  programs  c l i n i c s where t h e s u r g e r y t o o k p l a c e , o r by m e d i c a l outside  that  literature  work w i t h p a t i e n t s w i t h a l l t y p e s o f c a n c e r may the B i b l i o g r a p h y ) .  issue.  patients,  Clinic  which provide p o s t - s u r g i c a l t h e s e two l i m i t a t i o n s review  to this  cancer  treatments  do n o t p r e v e n t  only.  the relevance of t h i s  s t u d y on b r e a s t c a n c e r p a t i e n t s and  needs f o r r e h a b i l i t a t i o n from the important  role  services,  However,  their  n o r draw a t t e n t i o n  of the s o c i a l  worker.  away  20  Chapter THE  1.  The  Rationale The  in  helping  trauma o f "cure".  of  the  Study i n t e r e s t e d i n the and  a cancer diagnosis, I n many c a s e s ,  exploratory  help  was  cancer p a t i e n t s  of recurrent  patient  PROBLEM FORMULATION  for this  researcher  disease.  family  f a m i l i e s cope w i t h  the  treatment, r e h a b i l i t a t i o n  and  implies  Therefore,  lead  support  the  living  with the  researcher  felt  threat that  f a m i l y needs c o n c u r r e n t l y  t o new  an  with  insights into services  system to s t r e n g t h e n  Maxwell Evans C l i n i c  cancer patients  coming t o the  chemotherapy or  hormone p o s t  undergoing a traumatic the  psychological this Clinic  approaches. p a t i e n t and improvement.  which  through a  studies  into  the  clinic  time  s u r g i c a l treatment,  Clinic  little  in their  lead to  researcher  and  current  life  undue s t r e s s a t an  already  stressful  e t h i c a l question  the  focus  Clinic lend  s i t u a t i o n without  also arose of  time  past  intervention  support  a t o p i c which would  patient's  Some o f  undertaken i n the  w i s h e d a more p r a c t i c a l  Hence, t h e  are  lives.  insights into  f a m i l y n e e d s w h i c h may  breast  for radiation,  of patients  have l e d t o  The  i s aware t h a t new  experience  s o c i o e c o n o m i c c o n c e r n s as  The  s o c i a l work r o l e  stress. The  at  their  "cure"  i n v e s t i g a t i o n of  needs m i g h t  III  f o r the  a p p r o a c h i n g an  on  service chose insights creating patient. area  in  the  research able  that  i s p o t e n t i a l l y very  to provide  immediate c l i n i c a l  these areas discussed pain,  sexual,  traumatic  and  intervention.  were f e a r o f  marital  without  recurrent  relationships.  The  Some o f  disease,  nature that  solutions.  The  lend  t h e m s e l v e s more e a s i l y  researcher  felt  have a p s y c h o l o g i c a l l y h o p e f u l in  a more to  possible  this practical  e f f e c t on  focus  p a t i e n t s who  would  may  be  crisis.  2.  The  S o c i a l Work P r o b l e m i n Need o f The  being  importance of  recognized  by  considered  and  The  involved  family  d i r e c t s e r v i c e to  community.  As  role. is  more p a t i e n t s  support  Therefore,  i n c r e a s i n g l y one  as w e l l the  as  the  "family  of  system".  being  i s also  family  current  routine and  in  the  f o r a t home w i t h  i s taking  a more a c t i v e  i n need of  needs o f  mandate o f  research  family  a service the  members to  social  service  support s e r v i c e s to a l l f a m i l i e s and  f a m i l i e s whose a d m i s s i o n  d e p a r t m e n t has  A.  increasing  follow-up  cared  i d e n t i f y i n g the  socioeconomic problem.  service  There  s o c i a l work p r o b l e m  The  "out-of-town" p a t i e n t s and  are  a t the  increasingly  needs of p a t i e n t s , t o p r o v i d e  department i n v o l v e s  patients  i s being  f a m i l i e s and  s e r v i c e s , the the  support s t a f f  i n planning.  e m p h a s i s on  community  Research  f a m i l y members' i n v o l v e m e n t i s  a l l m e d i c a l and  Maxwell Evans C l i n i c .  a  that  death,  topic  "socioeconomic c o n c e r n s " would uncover problems of practical  being  Recently,  been e x p a n d e d  to those  in-town  f o r m s seem t o  t h e mandate o f to i n c l u d e  the  indicate the  social  person  22  who i s most r e s p o n s i b l e the  f o r the patient's well-being  primary c a r e - g i v e r ) .  I f a patient 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 care-giver interest  f o r helping  resume h i s n o r m a l l i f e .  of the s o c i a l  (i.e.  Therefore  the primary a  current  s e r v i c e department concerns the  p o t e n t i a l n e e d s o f f a m i l y members, as w e l l  as o f p a t i e n t s ,  w h i c h may a r i s e f r o m s o c i o e c o n o m i c change o r c h a n g e s i n f a m i l y roles  and r e l a t i o n s h i p s . The  needs o f p a t i e n t s  been r e s e a r c h e d speculate and  a t A. M a x w e l l E v a n s C l i n i c ,  although  a b o u t ways o f i d e n t i f y i n g needs f r o m  observations  family  and f a m i l y members have  o f p a t i e n t s , as w e l l  as b r i e f  never staff  experiences contacts  with  members. Although the l i t e r a t u r e  supports the notion  support i s c r u c i a l  to the p a t i e n t ' s  little  regarding  information  relationships  rehabilitation,  that  family  there i s  circumstances, a c t i v i t i e s or  i n the f a m i l y which s i g n a l a lack of support  or  a problem r e q u i r i n g a s s i s t a n c e .  be  one s o u r c e o f p o t e n t i a l s t r e s s w h i c h s i g n a l s a p r o b l e m i n  the  family  support  system.  h y p o t h e s i s by e x p l o r i n g members serve  since  The s t u d y w i l l  the p a t i e n t ' s diagnosis.  as a p r e l i m i n a r y  investigate  this  the socioeconomic concerns o f family Thus t h e s t u d y  will  i n v e s t i g a t i o n o f t h e needs o f t h e  f a m i l y members, p a r t i c u l a r l y  3.  S o c i o e c o n o m i c change may  those of the primary  care-giver.  The P u r p o s e o f t h e S t u d y In  summary, t h e r e s e a r c h  purpose o f t h i s  study i s t o  23 identify their  some o f  the  needs o f b r e a s t  f a m i l i e s which a r i s e  patients  and  f r o m s o c i o e c o n o m i c change  and  c h a n g e s i n r o l e s and  relationships.  improve the p l a n n i n g  and  to  breast  cancer  Maxwell Evans  4.  The  formulated of breast cancer  and  i n t o the cancer  problem which guides following questions:  a f f e c t e d the their  situation  responsibilities?" questions  on  which o u t l i n e s t h i s  1.  Are  there  2.  Are  Are  A.  life  this  enquiry  "How  has  situation  Under t h i s u m b r e l l a the  socioeconomic  of  16  a  breast  their family roles  of  the  are  four  patient  p a t i e n t going  i n work  responsibilities?  t o work?) i n income?  conditions?  there  changes s i n c e d i a g n o s i s  there  Are in  the  there the  in social  family?  in roles  and  and  e.g.,  changes i n c h i l d r e n ' s  family?  life  family?  changes s i n c e d i a g n o s i s the  been  diagnosis  new  question  life  has  exploration.  changes s i n c e d i a g n o s i s  relationships within a)  services  a t the  i n c l u d i n g employment and  relationships outside 3.  support  f a m i l i e s i n terms of  proposed  ( e . g . husband and living  of  will  Problem  p a t i e n t s and  specific  implementation  information  p a t i e n t s r e c e i v i n g treatment  research  socioeconomic  This  Clinic.  Research The  cancer  responsibilities  in  24 b)  Who  i s the primary care-giver  the  diagnosis  i n the family?  changed what h e / s h e does  Has  f o r the  patient? 4.  Are there (i.e.  changes  since diagnosis  f e e l i n g s t o w a r d a d e q u a c y and  Changes i n t h e s o c i o e c o n o m i c r e s p o n s i b i l i t i e s may outside  the f a m i l y  a s p e c t s may two  affect  influence  and i n r o l e s and  relationships within  of support  As  ( i . e . 2,  The p r o j e c t w i l l  identify  the areas i n the  s i t u a t i o n w h i c h have  needs  changed  t h e most c o n c e r n ,  i n terms o f the p a t i e n t ' s p r i o r i t y .  also t r y to identify and t h e i r those  the r e l a t i v e  f a m i l i e s of concrete  services offering  This  information  kind  and t i m i n g family  mother  four  patients  i n order This  to r a t e  study  will  patients  homemaker) and  support or c o u n s e l l i n g .  i n assessing  to the c l i n i c .  c h i l d r e n may  require  ( e . g . homemaker) b e f o r e  w i t h h e r own  patient's  t h e most and t h e  services,(e.g.  be o f v a l u e  these  t h e amount,  o f s u p p o r t s e r v i c e s n e e d e d by t h e p a t i e n t  as new  with  services  will  these  3, 4 a b o v e ) .  i m p o r t a n c e t o new  psychological  and  service required,  explored  a r e a s w h i c h have c r e a t e d  5.  status  and f e e l i n g s a b o u t o n e s e l f . the kind  self?  attractiveness?)  areas are a l s o being  socioeconomic  her  i n f e e l i n g s about  F o r example,  immediate  and  a  concrete  she w o u l d be a b l e  to deal  emotional adjustment to treatment.  Working D e f i n i t i o n s For  the purpose of t h i s  study,  "the primary  care-giver"  25 is  defined  as  the  p e r s o n who  patient's well-being, and  nursing  care  i s most r e s p o n s i b l e  particularly  as w e l l  as  financial  "Socioeconomic concerns" finances,  family  life  "Feelings attractiveness, t o be  independent,  6.  Value  1.  Undergoing the  present  as  fulfilling  level  of  of  friends  responsibilities.  i n terms o f a wife  personal  and/or mother,  others'  income and  and  expectations,  living  conditions.  Assumptions  trauma o f m a s t e c t o m y and  treatment e n t i t l e s program t h a t w i l l quality  of  quality  patient  planning  the  t o any of  patient her  t o any  regain  further  cancer  rehabilitation  normal a c t i v i t i e s  and  life.  functioning, entitled  the help  I f mastectomy and  The  i s defined  support.  i n terms  r o l e s and  competency i n f a m i l y  maintaining  3.  emotional  i s defined  s i t u a t i o n and  about s e l f "  and  2.  and  the  housekeeping  employment, h o u s i n g , t r a n s p o r t a t i o n ,  relatives,  ability  i n terms of  for  medical treatment a f f e c t s patient's  family  f a m i l y members a r e  s u p p o r t programs which w i l l  also  improve  their  life. should  and  psychological  should  be  involved  voice  her  needs t o h e l p  i n her  own  cancer  individual physical  her  rehabilitation.  treatment and  26  7.  Independent V a r i a b l e s Perceptions  of  Which May  Affect  S o c i o e c o n o m i c Change and  Concerns  Patient Characteristics The are  patients  considered  outpatient patients  Clinic  and  mainland. and of  new  their  Age,  present  diagnosis. illness,  a t the  to p a r t i c i p a t e i n t h i s  i n May,  A.  1978,  primary care-givers  and  the  breast  a l l live  i n the  s i t u a t i o n may  have some a f f e c t on  feelings patients  as  the  employment the  r e s u l t of  about l o s i n g a b r e a s t  may  amount  their  have a b o u t c a n c e r as  themselves, about  These  lower  s t a t u s , number o f d e p e n d a n t s ,  concern they perceive  The  of  study  Maxwell Evans Cancer C l i n i c .  about h a v i n g cancer  illnesses they  patients  marital  living  change and  requested  an  previous  a l s o a f f e c t the  changes  perceive.  Family C h a r a c t e r i s t i c s The  f a m i l y members r e q u e s t e d  study are  considered  by  staff.  Clinic  living  t o be  Age,  s i t u a t i o n and  the  marital family  the  amount o f  as  the  diagnosis.  care-givers  t o w a r d c a n c e r as  having cancer, toward the  toward the  patient's  changes they  primary  change and The  present  an  concern they  f e e l i n g s of  illness,  a breast  may  have  perceive  primary  toward the  previous  this  "care-givers"  s t a t u s , employment,  patient's  loss of  perceive.  patient's  r e l a t i o n s h i p t o p a t i e n t may  some a f f e c t on a r e s u l t of  to p a r t i c i p a t e i n  patient's  illnesses  also affect  and the  27 D i a g n o s i s and Treatment The  Plan.  patients participating  i n this  d i a g n o s i s o f b r e a s t cancer i n Stage  s t u d y have a  I , I I , I I I o r IV.  The  p o s s i b l e p o s t - s u r g i c a l medical treatments planned  f o r these  patients  irradiation  a r e chemotherapy, adjuvant  or hormonal treatment, patient affect  needs.  administered according to individual  T h e s t a g e o f c a n c e r and t r e a t m e n t p l a n may  t h e p a t i e n t ' s p e r c e p t i o n o f degree  the d i a g n o s i s . 15 r a d i a t i o n time  chemotherapy,  their  Stage  I patients often  treatments  treatment  over a p e r i o d  i s over.  Stage  o f change  receive  since  a course o f  o f 3 weeks a t w h i c h I I p a t i e n t s may be p a r t  o f an a d j u v a n t c h e m o t h e r a p y p r o g r a m f o r one y e a r w h i c h may follow  a c o u r s e o f 15 r a d i a t i o n  treatments.  Adjuvant  c h e m o t h e r a p y i s a p r e c a u t i o n a r y measure w h i c h r e d u c e s t h e chances  o f m e t a s t a s i c spread o f a Stage  Services The  Received  patients  Prior  I I cancer.  to Interview  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  t h e Mastectomy V o l u n t e e r Program  sponsored  Cancer  stay.  by t h e Canadian  Some p a t i e n t s may have r e c e i v e d  accommodation o r t r a n s p o r t a t i o n Maxwell Evans C l i n i c . nursing  Society during their  from  services received responses  help with arranging  to treatments  from  t h e A.  Some p a t i e n t s may have r e c e i v e d  t h e V.O.N, b r a n c h  i n their  or not received  t o c u r r e n t socioeconomic  hospital  neighbourhood.  b y p a t i e n t s may  home The  influence  needs and t h e p a t i e n t ' s  28 present Evans  a t t i t u d e s toward cancer  The treatment  p a t i e n t s w o u l d be  a t the C l i n i c has  respondent.  As  8.  interviewed before  i s a time  cancer  Persons The  i n f l u e n c e d by  Concerned With T h i s A.  Maxwell Evans C l i n i c  initiative  Committee: A  of  the  t h e r e s e a r c h and  social  and  receiving  treatment  a demonstration  and  counselling with social  Joe  was  an  change  current  daily,  experience  patients,  service  b a s i s upon  the  terminally  research project  cancer  ad hoc  Lagey,  a t the C l i n i c .  former  ill  director  United  with  cancer  Interested i n designing  involving  Dr.  director,  the e v a l u a t i o n research d i r e c t o r  of  may  department o f the  U.B.C. s o c i a l work p r o f e s s o r s , one  Family  i n the p a t i e n t ' s  Human  on  policy  o f G r e a t e r V a n c o u v e r , who  from  the  Subcommittee  l a t e Dr.  Way  the C l i n i c  after  Study  T h i s committee o r i g i n a t e d  of  choice of  concerns their  or  treatment.  Support  the  the  of upheaval  h e r p e r c e p t i o n o f c h a n g e s and be  their  begins, during treatment,  e n d e d , d e p e n d i n g on  this  c e r t a i n l y may  with  Maxwell  Interviewed  the treatment  and  a t t h e A.  Clinic. Time  life,  treatment  family  Lagey c a l l e d  the C l i n i c  together  Chaplain,  s o c i a l work s t u d e n t  o f U n i t e d Way,  the o u t p a t i e n t department a t the C l i n i c  and  (myself),  a social  S e r v i c e s of Greater Vancouver, the medical one  two  worker  director  former  patient, to discuss this  the f e a s i b i l i t y  c o m m i t t e e became r e c o g n i z e d  o f such a p r o j e c t .  as a subcommittee o f t h e  Human S u p p o r t Committee a t t h e C l i n i c . research  d i r e c t o r of United  The  Way, a member  evaluation  of this  subcommittee,  h a s d e s i g n e d a c o m p r e h e n s i v e framework f o r a f i v e y e a r investigating  t h e needs o f c a n c e r p a t i e n t s  The s u b c o m m i t t e e i s t h e r e f o r e this  project  and t h e i r f a m i l i e s .  interested i n the findings of  s t u d y and a l s o i n t h e e x p e r i e n c e s o f t h e i n t e r v i e w e r i n  contacting This  Later  and i n t e r v i e w i n g  information  will  help  cancer patients  and t h e i r f a m i l i e s .  t h e committee p l a n  a large  scale  p r o j e c t o f c a n c e r p a t i e n t and f a m i l y n e e d s i n v o l v i n g men a n d women, w i t h a l l t y p e s and s t a g e s o f c a n c e r , and d i f f e r i n g prognosis. Family  Services  A family family  of Greater  counselling  Vancouver  s e r v i c e may be p u r c h a s e d f r o m  s e r v i c e s by t h e A. M a x w e l l E v a n s C l i n i c  period.  Family  described  Services,  represented  above, i s t h e r e f o r e  needs o f f a m i l i e s o f b r e a s t from t h i s  for a  trial  on t h e s u b c o m m i t t e e  i n t e r e s t e d i n t h e c o n c e r n s and  cancer p a t i e n t s  that w i l l  result  study.  The S c h o o l o f S o c i a l Work, U.B.C. The Work  research  f a c u l t y members a t t h e S c h o o l o f S o c i a l  i s interested i n exploring  i n working with breast Little  the r o l e o f the s o c i a l  cancer patients  i s known a b o u t t h e f a m i l y  worker  and t h e i r f a m i l i e s .  support  system i n coping  30  with  breast cancer  but  p r o f e s s i o n a l s t o be Therefore, life the  this  of the  A. of  three  vital  research w i l l  Maxwell Evans  under the  on  rehabilitation.  the  socioeconomic  existing  supports  in  Clinic  Maxwell Evans C l i n i c a l  doctors  design  focus  medical  p o s s i b l e needs f o r s e r v i c e s .  and  the C l i n i c  d e p a r t m e n t , were a c t i v e l y and  by many  to a p a t i e n t ' s  f a m i l y system to e x p l o r e  f a m i l y and  The  i t i s recognized  of t h i s headings  Committee,  C h a p l a n and  i n v o l v e d i n the  research. "The  Trials  the  composed  social  problem  service  formulation  Their interest  has  been  discussed  Problem F o r m u l a t i o n "  and  "The  Design".  31 Chapter THE  1.  IV  DATA COLLECTION AND DESIGN  The D e s i g n C o n s i d e r a t i o n s The  purpose  of this  of  p a t i e n t s and p r i m a r y  in  roles  this  c a r e - g i v e r s which r e s u l t  and r e l a t i o n s h i p s  study  i s concerned  research i s to identify  and s o c i o e c o n o m i c  initially  t h e needs  from  changes  change.  with measuring:  Therefore,  1) how much  change and what k i n d s o f c h a n g e s a r e p e r c e i v e d by new b r e a s t c a n c e r p a t i e n t s and t h e i r was f e l t  about  each  study i s concerned  families;  and  o f these changes.  2) how much  concern  Subsequently, the  w i t h documenting t h e needs which a r i s e  from  t h e s e c h a n g e s and c o n c e r n s . Therefore, instrument, approaches and  i n choosing  t h e d e s i g n and r e s e a r c h  t h e r e s e a r c h e r c o n s i d e r e d what a r e t h e b e s t t o measuring  relationships,  socioeconomic  and d e g r e e  of concern  c h a n g e s , and how t o document p a t i e n t The respondents' through  r e s e a r c h e r chose  change, changes i n r o l e s to these  and f a m i l y n e e d s .  to identify  requests f o r services  relative  needs f i r s t l y  through  a n d h e l p , and s e c o n d l y  t h e i n t e r v i e w e r ' s p e r c e p t i o n o f 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 t h e b e s t method of  data c o l l e c t i o n .  As t h e f o c u s i s n o t o n l y  quantifying  amounts o f change and c o n c e r n  b u t a l s o d o c u m e n t i n g what  c h a n g e s a r e , and how c o n c e r n s  are handled,  services,  t h e r e s e a r c h e r chose  these  with or without  a fundamentally exploratory  design  to allow f o r f l e x i b i l i t y  interviewing descriptive  technique i n design  and d a t a  1. e.  the time  they  a breast cancer  treatment,  and w i l l  experience. causal  note  There w i l l  their  Clinic  cervical  cancer  treatment  follow-up from t h i s ' or finding  this  usually  families  i n a r e s e a r c h study.  good p r o g n o s e s .  e x p l o r a t o r y study.  o f cancer, of cancer  to assist  B r e a s t and  the researcher would be b e s t  that breast  cancer  homogeneity o f  was c h o s e n a s t h e t a r g e t  The o u t p a t i e n t d e p a r t m e n t was their  poor  Due t o t h e d i v e r s i t y o f  The f a c t  Thus, b r e a s t cancer  involving  clarified  as two p o s s i b l e g r o u p s  a f f e c t s women, i n c r e a s e s t h e p o t e n t i a l  population.  and  Design  a p p r o a c h e s t o any one t y p e  sample.  offered  be f o r m u l a t e d  design.  study.  a homogenous sample o f one t y p e  study  changes  experience,  be no t e s t i n g o f h y p o t h e s i s  p a t i e n t s were s u g g e s t e d  subjects with  how  was h e s i t a n t t o i n v o l v e p a t i e n t s w i t h  p r o g n o s e s and t h e i r  the  a similar  needs w h i c h a r i s e  f o r further research w i l l  The  for  describe  d i a g n o s i s , a m a s t e c t o m y and  S a m p l i n g C o n s i d e r a t i o n s and  felt  T h i s study i s  care-givers perceive  are coping with  from t h e f i n d i n g s i n t h i s  of  analysis.  personal  r e l a t i o n s h i p s o f t h e more r i g o r o u s e x p l a n a t o r y  Hypothesis  2.  collection,  i n that the f i n d i n g s w i l l  16 p a t i e n t s and t h e i r p r i m a r y during  i n data  interested  in a  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  i n the s e l e c t i o n  o f t h e sample.  Procedure  i n Securing Permission to  Interview Patients i n the C l i n i c The Committee  s t u d y p r o p o s a l was p r e s e n t e d  and t h e n  t o the C l i n i c a l  t o t h e Human  Trials  C a n c e r C o n t r o l Agency o f B r i t i s h Columbia Once t h e p r o p o s a l was p a s s e d  through  Committee o f t h e for their  these  Maxwell Evans Cancer C l i n i c  secure permission 1.  followed t h i s procedure  to  to interview patients:  establishing  t h a t the study  with patients referred  c o u l d take  place  t o t h e A. M a x w e l l E v a n s  Clinic.  A r e q u e s t t o t h e Forms and Documents Committee the  letter  entered Clinic 3.  at the  A d i s c u s s i o n w i t h D r . Goodman, D i r e c t o r o f t h e Clinic  2.  approval.  committees, Dr.  B a l l a n t y n e , D i r e c t o r o f t h e New O u t - P a t i e n t s C l i n i c A.  Support  t o t h e p a t i e n t (Appendix  i n the p a t i e n t ' s f i l e  that  C) c o u l d be  f o r t h e f a m i l y and  doctors.  A d i s c u s s i o n with the Radiotherapy  and M e d i c a l  O n c o l o g y D e p a r t m e n t s t h a t some o f t h e i r p a t i e n t s w o u l d be p a r t i c i p a t i n g 4.  A d i s c u s s i o n w i t h t h e 5 o t h e r New O u t - P a t i e n t introducing the  These procedures, operated  the project  sample f r o m  according  well  i n the study.  their  developed  and r e q u e s t i n g them t o s e l e c t  new r e f e r r a l s  t o t h e sample  i n May 1978  criteria.  f o r the f i r s t  s u c c e s s f u l l y and a l l C l i n i c  informed.  doctors  time,  personnel  once e s t a b l i s h e d i n v o l v e d were  34  The five 55  o t h e r New P a t i e n t C l i n i c  t o account  medical  stage  terms o f m e t a s t a s i c  of cancer,  from t h e approximately  The s a m p l i n g  for Clinical  o f cancer  and t h e  t o t h e New O u t - P a t i e n t s  t h e month o f May i n 1978.  stratified  in  doctors  new b r e a s t p a t i e n t s r e f e r r e d  during  The  sample was s e l e c t e d by D r . B a l l a n t y n e  refers  spread.  d e s i g n was  S t a g e I , I I , I I I and I V . to the severity  S t a g e IV p a t i e n t s have a " g u a r d e d " o r " p o o r "  body t h e c a n c e r The  of disease  Stage I , t h e e a r l i e s t  i n v o l v e s no m e t a s t a s e s and h a s t h e b e s t  d e p e n d i n g on t h e e x t e n t  Clinic  stage  prognosis.  prognosis,  o f t h e m e t a s t a s e s and t h e p a r t o f t h e  i s found.  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 I V ,  who a g r e e t o p a r t i c i p a t e , w o u l d compose t h e sample o f 16 patients  and t h e i r  must be l i v i n g care-giver breast  Clinic years  i n t h e lower  available  cancer  i n May.  families.  m a i n l a n d , have t h e i r  and be c o n s i d e r e d  a new r e f e r r a l  The p a t i e n t c o u l d be c o n s i d e r e d  i n May b u t have r e c e i v e d a c a n c e r before  to the C l i n i c  a new p a t i e n t o f t h e diagnosis several  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 .  the d i s c r e t i o n The  primary  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 o f  Patients not suitable  of  The women s e l e c t e d t o p a r t i c i p a t e  for this  o f Dr. Crawford  study  stages  t h e month o f May. representation  o f cancer  The r e s e a r c h e r  of this  at  and D r . B a l l a n t y n e .  representation of this  the c l i n i c a l  w o u l d be e x c l u d e d  sample w o u l d be i n t e r m s  referred  to the C l i n i c  during  i s aware t h a t t h e t o t a l  g r o u p o f women a s b r e a s t c a n c e r  patients  is  unknown.  legitimate the  However, t h i s d e g r e e o f i n an  stage of  representation  exploratory-descriptive  c a n c e r w o u l d be  sampling  design,  the  w o u l d be  considered  asset  to  Although  i n t o a c c o u n t by  d e m o g r a p h i c and an  study would e x p l o r e  taken  study.  biographical  t h i s exploratory  whether d i f f e r e n c e s  i n age,  of  impact of  and  the  project,  s e l e c t i o n of  limited  The  New  new  w o u l d r e l y on  stage of  e v i d e n c e about c a u s a l  patients  patient  w o u l d be  the  the  would then sent  found  the  cancer patients  New  appointments at  the  letter fill  to the  of  Due  to  The  an  information  At sent  Maxwell Evans C l i n i c  an  the  of  o u t l i n i n g the  1,  by  1978,  their  their to  initial each  i n A p p e n d i x A.  Department f o r the  explanatory  However,  Clinic.  sheet about the  t h i s time, the  to  services.  d o c t o r would g i v e found  this  situations  s t a r t May  one  through  attempt  this project  during  introduction,  Social Service  i n A p p e n d i x C.  to  diagnosis  relationships.  r e f e r r e d to  Clinic  Clinic.  out  are  status,  stage  control  cancer.  sample w o u l d  introduced  Patients  d o c t o r w o u l d a l s o be A.  the  c o n t r o l , t h i s study would not  s e l e c t i o n of  This  services.  i n d i c a t e p a r t i c u l a r n e e d s and  breast  doctor at  be  by  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  w h i c h seem t o  as  therefore,  subjects  attempt a t  draw c o n c l u s i v e the  socioeconomic  r e s u l t i n g needs f o r s u p p o r t This  the  the  variables  marital  e v e n t s and  influenced  the  design.  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 cancer  is  purpose of  patient research,  patient's letter  He  family  from this  the study  to  found  i n A p p e n d i x B.  The p a t i e n t and h e r p r i m a r y  ( f a m i l y member) w o u l d be i n t e r v i e w e d once w i t h if 3.  similar  questionnaires,  p r e f e r r e d , a t the School  i n separate  care-giver sessions,  e i t h e r i n h e r own home o r  o f S o c i a l Work.  Confidentiality R e s p o n d e n t s were a s s u r e d  patient's  letter  researcher  of confidentiality  of introduction  i n the  (Appendix A) and by t h e  i n person a t t h e time o f t h e i n t e r v i e w .  The  f i n d i n g s have been made anonymous t h r o u g h c u m u l a t i v e  totals  and  If a  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  specific  reference  i s made t o one i n d i v i d u a l ' s r e s p o n s e , t h e  identifying  letter  identifying  information  4.  o f t h e name h a s been c h a n g e d , and no o t h e r  Instrument Devised The  information.  Clinic  i s given.  For This  requested  Study  that the researcher  compose an  o r i g i n a l measurement o f change and c o n c e r n w i t h o u t known p s y c h o l o g i c a l measurements o f a n x i e t y events.  The Human S u p p o r t C o m m i t t e e ' s  Clinical  Trials  social areas  the use o f  or recent  stressful  subcommittee, t h e  Committee and t h e D i r e c t o r o f t h e C l i n i c ' s  s e r v i c e department c o n t r i b u t e d of interest  during  their  the formulation  s u g g e s t i o n s and  of the interview  schedule. An  interview  schedule  was composed t o f o r m two s c a l e s  t o m e a s u r e t h e amount o f change and d e g r e e o f c o n c e r n by  the respondents.  perceived  One s c a l e m e a s u r e d d e g r e e o f change  according  to respondent's perception  somewhat, o r no areas  change" a c r o s s  of p o t e n t i a l change.  o r any using and  of the  no  the  a b o u t any  socioeconomic  s c a l e measured of  the  the  changes mentioned  f o r m , i . e . "a g r e a t  deal,  somewhat,  areas  of  concern".  potential  questionnaire  1.  Housing  2.  Work and  3.  Family  4.  Relationships with  5.  Feelings  and  Living Situation  Roles  and R e s p o n s i b i l i t i e s  about  for  t h e p a t i e n t and  changes the perceive  f o r m were d e v i s e d ,  form f o r the  primary  t h e p r i m a r y c a r e - g i v e r i s an  of t h i s  study  f a m i l y as  f o r two  care-giver  situation  a primary source  Firstly,  cancer  diagnosis  i s incomplete of  patient perceives gain  with  changes her  information  members t h e m s e l v e s e x p e r i e n c e  as  compare  family  about changes  a result  without  information.  i n t e r v i e w i n g o f a f a m i l y member w i l l  as w e l l as  one  important  reasons.  impact of b r e a s t  upon a p a t i e n t ' s s o c i o e c o n o m i c  Secondly, the  Friends  E).  attempt t o measure the  the  and  of a s i m i l a r  a shorter  Interviewing the d e s i g n  Family  Self.  schedules  i n Appendix  including  divided into five  Transportation  interview  part of  was  change:  Two  an  second  deal,  s o c i o e c o n o m i c v a r i a b l e s o f p o t e n t i a l change  same c a l l i b r a t i o n  The  (found  "a g r e a t  a number o f  The  amount o f c o n c e r n o r a n x i e t y  of  of the  may  family  diagnosis.  Therefore,  the i n t e r v i e w s w i t h the p a t i e n t  c a r e - g i v e r w o u l d t a k e p l a c e on  and  t h e same day,  primary  i n separate  interviews. Baseline As  the  framework o f t h i s  t h e d i a g n o s i s on patient, recent and  other  will  and  a l s o be  lh  from  primary  -  of  2 hours  cancer  f a m i l y and  to d i a g n o s i s .  work  Information  expected  cancer  files.  i n l e n g t h w i t h t h e p a t i e n t s and  be  i n Appendix  Other  the  their  s o u r c e s o f d a t a were p e r s o n a l  service  f i l e s of the  and  outpatient c l i n i c  The  staff  medical information  16 p a t i e n t s i n t e r v i e w e d  may  C.  A d m i n i s t r a t i o n o f the I n t e r v i e w  Schedule  Pre-test  A pre-test w i t h two  the  with respect to  situations,  prior  Maxwell Evans C l i n i c .  The  of  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  from  6.  situation  of  Data  compiled found  collected  the impact  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  care-givers.  t h e A.  life  on p a s t , c u r r e n t and  interviews with s o c i a l at  be  socioeconomic  collected  Major Source  about  socioeconomic  responsibilities  The  s t u d y i s on  change e v e n t s , p r e v i o u s e x p e r i e n c e s w i t h  illness,  treatment  5.  the  baseline data w i l l  life  roles,  Data  o f t h e i n t e r v i e w s c h e d u l e was  p a t i e n t s and  their  primary  care-givers.  carried The  out  first  lady  experienced  her  second experienced interview. other  an  One  adult  m a s t e c t o m y two  her  years  changed t o a l l o w  The  felt  t o be  phrase  centre  around  of t h i s p r e - t e s t , the  respect  to the  last  a threatening  "unable to  say"  uncomfortable with  Interviewing As  a  letter  was  that  the  is  found  patient  emphasized  patient  to the  the the  given  w o u l d be time. As  same i n t e r v i e w  the  reliability  and  and  her  care-giver.  the  to the  option i f she  was The  t o Q.  VI  1.  feels  her  sampling  patient during outpatient  telephoning  by  verbal  i n the  mentioned  n e x t week  to  telephone conversation  outline  one  visit  each  w o u l d be  interviewer  made t o  tried  to  a general  arrange  increase  o f a c o m p a r i s o n between  i n t e r v i e w began w i t h  project followed  a  doctor,  time f o r b o t h . T h i s would a l s o validity  design,  The  f a m i l y member, t h e  the  The  changed  questionnaire. first  As  topic.  p r o j e c t by  interview  primary  their  "changes i n s e l f "  n o t e t o end added as  that  i n t e r v i e w was  p r e v i o u s l y o u t l i n e d i n the  i n A p p e n d i x D. and  was  Procedure  researcher  a r r a n g e an  the  socioeconomic change.  s e c t i o n as  was  this  (Appendix A)  introduction  her  interview  to enable a respondent to d e c l i n e responding  7.  to  f o r a more o p e n - e n d e d r e s p o n s e t o m a j o r  main c o n c e r n s d i d not  with  the  a husband and  primary care-giver  c o n c e r n s , as b o t h p r i m a r y c a r e - g i v e r s  a result  and  m a s t e c t o m y s i x months p r i o r  p r i m a r y c a r e - g i v e r was son.  ago,  patient  introduction  a s h o r t d i s c u s s i o n a b o u t who  to  would  40  like  t o be i n t e r v i e w e d  transgress  from  first.  Respondents  scheduled t o p i c s  t r a n s g r e s s i o n would and  concerns.  8.  Data A n a l y s i s  lead  were a l l o w e d t o  i fthe interviewer  to insights  into  current  changes  Design  Information gathered during  the interview w i l l  considered according to the f i v e  areas o f p o t e n t i a l  and  under  concern p r e v i o u s l y mentioned  Devised  forthis  Study."  This  o f the problem  v a r i a b l e s mentioned which  formulation.  the heading  "Instrument  attempt t o  Any i n d e p e n d e n t  "Independent  and c o n c e r n s a g r e a t d e a l , w i l l  Variables"  be n o t e d .  be s e e n a s r e s p o n s e s f r o m one f a m i l y  accordingly. five  change  t h e h e a d i n g "The  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  will  Findings  areas of p o t e n t i a l  headings. table rather of  under  be  seem t o t h e r e s e a r c h e r t o i n f l u e n c e p e r c e p t i o n o f  changes to  under  the heading  analysis w i l l  answer t h e r e s e a r c h q u e s t i o n s p o s e d Research Problem"  f e l t the  form.  a n d f a m i l y member system,  and d e s c r i b e d  from d i s c u s s i o n s n o t r e l a t e d change w i l l  Due t o t h e s m a l l  than percentages w i l l  separate  be summarized i n  sample s i z e ,  t h e number o f c a s e s  be u s e d t o i n d i c a t e  question.  tothe  be d i s c u s s e d u n d e r  Some m e d i c a l i n f o r m a t i o n w i l l  responses t o each  Responses  t h e number  Chapter STUDY  1.  V  FINDINGS  I n t r o d u c t i o n - Problems i n Sampling From t h e t o t a l  patients  referred  the requirements project.  and  Data  p o p u l a t i o n o f 55 new  to t h i s C l i n i c  i n May,  o f t h e sample and  Collection  breast cancer  23 p a t i e n t s  were i n t r o d u c e d t o  Of  the remaining  32 p a t i e n t s n o t r e q u e s t e d  participate,  approximately  27 were l i v i n g  mainland.  The  remaining p a t i e n t s  period  be  to  d i d not  lower  f i t i n t o the  criteria  Seven o f the 2 3  o f t h e sample were n o t i n t e r v i e w e d d u r i n g t h e i n t e r v i e w  o f May  15  t o J u n e 15  p a t i e n t s c o u l d n o t be doctor  the  o u t s i d e the  o f t h e s a m p l e , o r were i m m e d i a t e r e f u s a l s . patients  fulfilled  f o r the  following  reasons:  c o n t a c t e d by t e l e p h o n e ; one  telephoned the r e s e a r c h e r to request that  removed f r o m  psychiatric the C l i n i c  t h e sample as he  treatment;  (This  l a d y was  s o c i a l worker because only f a i r  felt  she was  p r o g n o s i s was  one  woman s a i d  her  t r e a t m e n t s were o v e r w h i c h w o u l d be  like  researcher;  another  p a t i e n t who  Clinic  said  she was  not r e a l l y  wished  t o be  his patient need  extremely  h e r husband was  t o be  family  subsequently  Her  she w o u l d  and  she w o u l d  lived  from  not t o l d  about  a commercial  fishing  upset.  trip;  another  one  the  patient husband  husband who  t h e s t u d y by h i s w i f e r e f u s e d t o  after  f o r the  5 0 m i l e s away f r o m  interested;  by  unemployed.)  i n t e r v i e w e d i n s e v e r a l months when h e r  returned  seen  interviewed i n July too l a t e  two  was  participate  when t h e 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 w i f e  was  The d e m o g r a p h i c c h a r a c t e r i s t i c s o f t h e 7 p a t i e n t s  asleep. described  above were n o t a t y p i c a l o f t h e r e s t o f t h e sample  according  t o age, m a r i t a l  prognosis.  status,  The r e s e a r c h e r  living  s i t u a t i o n or  assumes t h e r e f o r e  s i t u a t i o n may have i n f l u e n c e d  the patient's  that  a social  decision notto  participate. Overall  therefore,  show any h e s i t a n c y research  project  good r e s p o n s e r a t e  Clinic  doctors  and p a r t i c i p a n t  two c a s e s ,  but  case,  left  new b r e a s t  the i n t r o d u c t i o n of t h i s  c a n c e r p a t i e n t s were  described  A.) t h e h u s b a n d a g r e e d  was t o l d  by h i s w i f e  i n more d e t a i l .  patient requested that  there  that  t o be i n t e r v i e w e d . "  later  of her f a m i l y  This  h i m . The " I s e e no change  case w i l l  be a l s o  I n t h e second case,  (Mrs.  D.  I t a l k t o h e r a l o n e w i t h o u t any  was a p r o b l e m c o n c e r n i n g be d i s c u s s e d  fulfilling  The r e s e a r c h e r  found  t h e mastectomy i n t h i s  later.  In terms o f r e p r e s e n t a t i v e n e s s the patients  In the  to the interview  he s a i d  knowing a b o u t t h e v i s i t .  f a m i l y , which w i l l  cancer,  interviewed.  a f a m i l y member was n o t i n t e r v i e w e d .  (Mrs.  so why b o t h e r  that  made by t h e New  t h e house when I a r r i v e d t o i n t e r v i e w  researcher  the  concerning  co-operation  to the p a r t i c i p a n t s . Sixteen  first  d i d not  to participating i n this  l a r g e l y due t o t h e c a r e f u l p r e p a r a t i o n  Patients  In  or resistance  contacted  project. The  was  the patients  of the 4 stages of  t h e r e q u i r e m e n t s o f t h e sampl  represented found the  i n the  total  i n the  Stratification  time  allowed  although  to  than represent  t h e r e f o r e not  a sample o f e a c h  stage  represented. The  in  population.  c o r r e c t p r o p o r t i o n s o f e a c h s t a g e was  achieved is  a h i g h e r p r o p o r t i o n o f Stage I cancers  f o l l o w i n g t a b l e compares t h e number o f p a t i e n t s  each stage  i n May  i n the  total  p o p u l a t i o n o f new  t o t h e number i n e a c h s t a g e  (Data was  gathered  by  t h e D i r e c t o r o f t h e New TABLE  T o t a l No.  o f New B r e a s t P a t i e n t s i n May  Stage 1  t h a t were  = 1 6  breast patients interviewed: Patients' Clinic.)  1 T o t a l No.  Stage 1  of P a t i e n t s I n t e r viewed  =  11  70% Stage 2  Stage  = 2 3  3 30%  Stage Total  =  As represented,  =  the  3  Stage 3  1  Stage  1  16  4 100%  Stage 2  55  Total  above t a b l e i n d i c a t e s ,  while  Stages  I I , I I I and  4 =  16  Stage I i s over IV a r e u n d e r  represented.  2.  Impressions About Patients  and  Interviewing  Their  Generally  Families  s p e a k i n g , a l l p a t i e n t s and  were i n t e r e s t e d i n t a l k i n g w i t h variety The  of questions  husbands of  speaking with At  the  end  relieved  c o f f e e and this  difficult  who  The  had  see  i f everything  me  a major  researcher Several  researcher  respect  to the  a n x i o u s and (,e.g. Mr.  and  interview.  defensive  B.) may  alright.  s o u r c e o f e r r o r as to r e t u r n  to  although not The  two  to the  sisters  According  affects  the  to the  anxiety  the  visibly  with Interruptions was  topics after  same and  literature  extent  two  anxious  seemed t o  a breast  about helping. with  be  situation,  was " c h e c k i n g cancer  up  on  diagnosis  h u s b a n d - w i f e r e l a t i o n s h i p on many l e v e l s  e x p e c t a n c y , awareness o f m o r t a l i t y , s e x u a l  daughters  t h e y were  role in this  researcher  about  o f husbands  Some h u s b a n d s who  about t h e i r  have f e l t  them."  about the  ask.  For  i t  serious  c o n f i d e n t l y r e l a t e d how  speculates  I might  h u s b a n d s were  c a r e - g i v e r s were n o t i c e a b l y n o t  interviewed  about  p a t i e n t s were a l s o a n x i o u s  initially,  were p r i m a r y  questions  was  a  prostheses.  been n o n - t h r e a t e n i n g .  to  be  asked  i n t e r r u p t e d s e v e r a l times  t h e i r primary care-givers.  being  about the  F.  f o r the  and  care-givers  seemed somewhat a n x i o u s  Mr.  such d i s r u p t i o n s .  as  interview  could  speaking with  patients  and  jokes  kind  interviewer  i n t e r v i e w , most o f t h e  t h a t the E.  the  primary  a b o u t c l o t h e s , t r e a t m e n t and  particularly  of the  e x a m p l e , Mr.  of  the  me,  Cancer  i.e.  life  r e l a t i o n s h i p and  80 lifestyle.  Therefore,  this  i s a very  stressful  and  anxious  time f o r the Allowing present  husband r e g a r d l e s s  p a t i e n t and  of the  f a m i l y member t o d i s c u s s  concern reduced p a r t i c i p a n t ' s anxiety  s o c i o e c o n o m i c c o n c e r n s i f t h i s was and  enabled  manner. in  In  the  interview  the  researcher's  a p o s i t i v e way  any  Moreover, the  and  of  p a t i e n t and  their  anything  of  to  on  immediate  smoothly i n a  opinion,  a l l the  interviewer  was  focus  concern,  conversational interviews  ended  willing  discuss  to  spent  some t i m e t a l k i n g a b o u t h e r s e l f  f a m i l y w h i c h a l s o seemed t o r e d u c e  anxiety  "break the i c e " . o f Change and  Patients  and  a d m i t c o n c e r n s and respondents f e l t that  This  desirability handling  on  Concern  f a m i l y members o f t e n  changes throughout the  r e s p o n s e may the  their  f o r the  secure  so  interview.  reflect  respondent to  own  she  would  indicate  may  social  and  expertise  F u r t h e r m o r e , Peck s a y s d e n i a l effective  temporary  w i s h e s t o keep her  cope w i t h  in  i n f l u e n c e of  show c o n f i d e n c e  situation.  p a t i e n t who  the  to  Possibly  s e r i o u s problems or d i f f i c u l t i e s  o f change o r c o n c e r n i s o f t e n an strategy  seemed h e s i t a n t  t h e s e comments t o a r e s e a r c h e r  t h e y were h a v i n g  "coping".  and  not  interview.  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 .  researcher  Denial  in  to run  because the  t o p i c w h i c h was  t o the  research  life  future unavoidable  coping stable  changes  81 in  her  body i n age  took the  and  possibility  a c c o u n t by  listening  statements about the  health.  of d e n i a l of  Therefore change and  the  researcher  concern  f o r a respondent's c o n f l i c t i n g same s u b j e c t .  This  approach  into or  ambiguous  towards  46  identification  o f d e n i a l formed  concept f o r the purposes of As variable of data  d e n i a l was  in this  a n a l y s i s and  definition  this  found  study,  the  b a s i s of d e f i n i n g  study.  t o be  important  a d e f i n i t i o n was  presenting  the  o f " d e n i a l " w o u l d be  as  of  same i s s u e d u r i n g  " d e n i a l " was  t h e r e f o r e not  or explanation  of  this  follows:  conflicting  interview.  For  interview  and  everything  mentioned she  The  schedule  she  was was  could not  indicated  example, Mrs.  found  was  t h a t the the  not  end  these  of i n d i v i d u a l The  degree of  the  areas  interest  appropriate  f o r the  of  the  to a question  concerned  about  upset  because  on anything  she  Statements l i k e  c o n c e r n to the  interview  to the  she  felt these  researcher.  considerably  i f the  of c o n f l i c t i n g  researcher  statements,  respondent. the  findings  exploratory design.  concern  i n the  interview  p o s s i b l y because the  t i m e and  definition  a way  during  i n f l u e n c e o f d e n i a l on  variability  definition  simply  p a r t i c i p a n t s were of  s c a l a r m e a s u r e s o f change and  not  was  p o s s i b l e t o measure i n t h i s  showed l i t t l e  not  statements  However, i n c o n v e r s a t i o n  s l e e p i n g and  time to d i s c u s s  areas  same.  some d e n i a l o f change and  more i n v o l v e d t o w a r d  and  the  was  researcher's  psychoanalytic  responded  purposes  working  This  collected  have "company" anymore.  researcher  spent  t h a t she  just not  M.  A  o r ambiguous  usual  information  unanticipated  f o r the  the  interview.  the  an  needed  d e f e n s e mechanism b u t  identifying  the  the  as  findings.  awareness o f a r e s p o n d e n t ' s c o n f l i c t i n g about the  this  situation  of  The schedule  instrument  was  these p a r t i c i p a n t s .  47  The  comments w h i c h i n d i c a t e d  were r e c o r d e d f o r i n d i v i d u a l  changes,  concerns  cases.  schedule w i l l  3.  The  L i m i t a t i o n s of the i n t e r v i e w  o f the Instrument"  Interview  of  systematically  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  "Suitability  anxiety  However, t h e d e g r e e  c o n c e r n o r amount o f change c o u l d n o t be measured f o r a l l r e s p o n d e n t s .  and  i n the f i n a l  under the  heading  chapter.  Schedule  Introduction Sixteen patients members o f t h e i r study.  A  immediate  summary a c c o u n t  Interview Schedule Section the  I, w i l l  findings.  fourteen primary care-givers, a l l  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 o f the f i r s t  (Appendix  two  sections of  the  E) ( i . e . G e n e r a l I n f o r m a t i o n ) and  be p r e s e n t e d t o i n t r o d u c e t h e d i s c u s s i o n Following this  Interview Schedule  account,  the  f i n d i n g s of  beginning at Section II w i l l  u n d e r t h e theme h e a d i n g s c h a n g e s and  and  concerns  o f the f i v e p o t e n t i a l  of  the  be d i s c u s s e d socioeconomic  i n the schedule: i . e . II Place 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  O u t s i d e t h e Home;  IV F a m i l y R o l e s  V Relationships with  F a m i l y and  Responsibilities;  F r i e n d s and,  t h e number and be n o t e d  and  kind  VI F e e l i n g s about  of responses  to i n d i v i d u a l  a t the b e g i n n i n g of each  compromise between i n d i v i d u a l i z i n g  trend  questions  the r e s e a r c h e r chose each  case without  showing the t r e n d s i n a l l c a s e s .  analysis  Reference  to  will  section.  In p r e s e n t i n g the f i n d i n g s  l e n g t h y and  Self.  to  becoming  Therefore, a  i s p r e s e n t e d u n d e r t h e theme h e a d i n g s ,  illustrated  48 by  the salient  f e a t u r e s o f each case  and t h e r e s e a r c h e r ' s  comments and i m p r e s s i o n s .  4.  D e s c r i p t i v e Data General Age -  Information The p a t i e n t s '  her  thirties,  four i n their  one  patient i n her seventies. Living  Situation  ages ranged  forties,  nine  and P r i m a r y  from  one p a t i e n t i n  i n the s i x t i e s ,  Care-Givers  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 , their  h u s b a n d s who were t h e i r  primary  o t h e r p a t i e n t s were widows who l i v e d Mrs.  K. and M r s . P. h a d s i s t e r s  while  p a t i e n t s had c h i l d r e n  F i v e p a t i e n t s had c h i l d r e n nine p a t i e n t s with had  children  children 5.  care-givers. alone.  as t h e i r  t h e o t h e r , M r s . G. h a d h e r d a u g h t e r  Fourteen  living  living  children  ranging  aged  The t h r e e  as p r i m a r y c a r e - g i v e r .  i n age f r o m  12 t o 46.  a t home.  Of t h e  a t home, s i x p a t i e n t s  i n t h e Lower M a i n l a n d  while  t h r e e had  outside the province. with  Illness  Diagnosis  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 e l e v e n went t o t h e d o c t o r a s soon a s p o s s i b l e . l a r g e number to  with  primary c a r e - g i v e r s ,  12-22 l i v i n g  not l i v i n g  living  Two o f t h e widows,  D i a g n o s i s , T r e a t m e n t and P r e v i o u s E x p e r i e n c e A.  to  The  o f 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  Breast Self  Examination  t h r e e months u n t i l  E d u c a t i o n Programs.  she r e t u r n e d home f r o m  M r s . K.  a world  waited  t r i p and  Mrs.  C.  other i.e. and  waited  over  a year, hoping  i t would d i s a p p e a r .  The  t h r e e p a t i e n t s went t o t h e d o c t o r f o r s o m e t h i n g Mrs.  Mrs.  breast  B. M.  f o r a r e g u l a r c h e c k - u p , Mrs. f o r a h e r n i a , a t which time  cancer.  seven  who  having  days  later.  mastectomy i n one had  a few  two  for phlebitis,  the d o c t o r  Seven p a t i e n t s e x p e r i e n c e d  a mastectomy a few b i o p s y and  F.  suspected  a b i o p s y and  then  Nine p a t i e n t s r e c e i v e d the  operation.  Mrs.  I . , one  o p e r a t i o n s , m e n t i o n e d t h a t she  days t o p r e p a r e  else,  of  the  appreciated  f o r the mastectomy a f t e r  her  biopsy.  or  B.  Medical  All  sixteen patients experienced  s i m p l e mastectomy p r i o r  p a t i e n t s , Mrs. for  Treatment  E . and  to the i n t e r v i e w .  Mrs.  P were a w a i t i n g  the removal of the o t h e r b r e a s t .  completing course  a schedule  of f i f t e e n  o f t h r e e weeks.  p a t i e n t s , Mrs.  I . , Mrs.  treatments  one,  while  and  the remaining  By  the  L.,  Mrs. seven  and  of the  Mrs.  J . had had  radiation  time  N.,  completed  not  started  of medical  if  they  Two  A.  w o u l d be  required irradiation.  after radiation a hormonal at the  time  i n an  treatments.  (stilbestrol)  One  therapy  of the i n t e r v i e w .  Two  radical  of  these  hospitalization  E l e v e n p a t i e n t s would  p a t i e n t s were a w a i t i n g r e s u l t s  participating  a modified  treatments  a  interview, three  had  started  radiation  radiation  treatments  treatments.  Two  tests before  p a t i e n t s , Mrs.  adjuvant  over  be  D.  and  chemotherapy  p a t i e n t , Mrs.  M.,  program f o r l i v e r  knowing  had  Mrs.  program started  metastases  50  C.  Previous Experiences C a n c e r and  In response or your  had Mrs.  cancer. M.  has  Four had  thyroidectomy  had  this  and  6 .  Place of The  Section 1.  Mrs.  J . had  two  Mrs.  I . had  t h e y had  who  illnesses.  now  has  previous Mrs.  P.  diagnosed major  had  a  seven  years  no p r e v i o u s i l l n e s s e s . c o n d i t i o n but  Mrs.  d i d not  ago. F.  consider  Residence f o l l o w i n g i s an  were widows who  account  lived  a l o n e , and  lived  on  Two  two  with  The  their  The  remaining  sixteen patients  i n the f o l l o w i n g communities:  Maple Ridge,  Mount Leyman.  of these p a t i e n t s  lived  V a n c o u v e r , B u r n a b y , Richmond, New  Coquitlam,  to  "place of residence".  r e t i r e m e n t homes.  p a t i e n t s were homeowners.  interviewed  of the responses  i n apartments.  husbands i n s e n i o r c i t i z e n  North  family  illness.  patients lived  twelve  while  a r r e s t e d glaucoma.  a stomach u l c e r  I I of the Interview Schedule  Four  extended  you  cancer?"  cancer,  previous  a m a s t e c t o m y and  a serious chronic phlebitis a previous  t h e y had  f o r a c o l l a p s e d womb.  Twelve p a t i e n t s s a i d had  o r more o f t h e i r  a h e r n i a f o r f o u r y e a r s and she  "Have  previous experience with  patients said  l i v e r metastasis.  o p e r a t i o n s , one  any  section  previous experience with  p a t i e n t s knew one  T h r e e y e a r s ago with  no  Illnesses  to the q u e s t i o n of t h i s  f a m i l y member had  f o u r p a t i e n t s had twelve  Other  with  Delta, Langley,  Vancouver,  Westminster, Abbotsford'and  51 2.  During  the past  two y e a r s  address? 3.  Since  have y o u c h a n g e d  your  Yes:  No:  14  y o u f o u n d o u t y o u had b r e a s t  changed your a d d r e s s : Have y o u made p l a n s  Yes:  have y o u  0  No: 16  2  No: 14  t o do s o ? Yes:  If  cancer  2  " Y e s " was y o u r d e c i s i o n t o move i n f l u e n c e d i n any  way by y o u r d i s c o v e r y  t h a t y o u have b r e a s t Yes:  cancer?  1  No: 15  Comments In r e s p o n s e t o t h e q u e s t i o n in  this  community?"  community plans  of residence.  plans to  One p a t i e n t , M r s . K., was  of residence  K. had been t r a v e l l i n g  i n t h e same  T h e s e p a t i e n t s had no c u r r e n t  t o move and t h e m a s t e c t o m y d i d n o t a f f e c t  change h e r p l a c e  Mrs.  l o n g have y o u l i v e d  p a t i e n t s had l i v e d  f r o m 12 t o 46 y e a r s .  change p l a c e to  fourteen  "How  b e c a u s e o f h e r mastectomy.  f o r two y e a r s  ( s e e B i o g r a p h y ) and  had  not completely  she  w o u l d be b e t t e r i n an a p a r t m e n t w i t h  had  c o n c e r n s a b o u t h e r f u t u r e h e a l t h and h e r e n e r g y Mrs.  moved i n t o h e r a p a r t m e n t .  K. knew s h e h a d a l a t e r  speculated  o r move i n t o hall  whether she s h o u l d  a senior citizens'  level.  cancer,(i.e.  " t r e a t m e n t would  i n h e r own  complex w i t h  and r e c r e a t i o n a l f a c i l i t i e s .  anxious about s t a y i n g alone  stay  She wondered i f  an e l e v a t o r a s she  staged  S t a g e I I I ) and was a n x i o u s a b o u t w h e t h e r She  planning  apartment  communal d i n i n g  M r s . K. was p r e s e n t l y  i n her apartment.  work".  Three  very  other  52 p a t i e n t s had was  concerns about changing p l a c e of  Mrs.  0.  planning  felt  more a t home and their  t o move b a c k t o t h e M a r i t i m e s could  live  a less  C.  was  selling  in  the  same community where a l l h e r  wants t o c o n t i n u e her  d a u g h t e r who  Mrs.  G.  to l i v e  d i d not  high  in  Although  connect  these  B.  Mrs.  o l d neighbourhood Mrs.  more e a s i l y 0.,  Mrs.  speculates stability  G.  opposes in a C.  d e c i s i o n s about p l a c e of  researcher  she  life.  h o u s e and  Mrs.  are moving towards a g r e a t e r  and residence  that these  three  and  security  t o compensate f o r o t h e r  changing  i n health.  Work  The  f o l l o w i n g i s an  s e c t i o n on  Are  Do  Do  t h e Home and  A.  interview A.  own  rise.  Work A c t i v i t i e s O u t s i d e  to the  i n her  w o u l d manage  t h e i r place of residence  areas  7.  alone  where  friends lived.  she  t o t h e i r mastectomy, the patients  stressful  home t o move back t o h e r  feels  senior citizens'  residence.  Transportation  Activities account of p a t i e n t s ' responses  "work a c t i v i t i e s  o u t s i d e the  home" i n  the  schedule: you  you  you  employed o u t s i d e t h e  do  volunteer  home? Yes:  8  No:  8  Yes:  2  No:  14  work?  a n t i c i p a t e your treatment  volunteer  will  affect  your  work? Yes:  0  No:  2  If  employed o u t s i d e t h e home:  1)  What i s y o u r  2)  F o r how  job?  D e s c r i p t i o n i n summary  l o n g have you worked a t t h i s Years:  3)  Are  you w o r k i n g now?  I f "No"  do  you  0  anticipate  I f "No" i)  does t h i s  Your p r e s e n t  8  Other or  I f you  0  your  with:  No:  0 of  NA  your  f a m i l y members? 0  Previous experiences with  No:  8  cancer?  0  No:  8  No:  Nil  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)  Will  t h e r e be  a change i n h o u r s ,  responsibilities,  I f "Yes"  c o u l d you  change may i)  Has be  job  work c o n d i t i o n s o r Yes:  a)  t o do  recent or current i l l n e s s e s  Yes:  4.  0  illness:  Yes: iii)  8  No:  have a n y t h i n g  Yes: ii)  No:  r e t u r n i n g t o work?  Yes: b)  job?  5-19  Yes: a)  account.  0  income?  No:  8  s a y more a b o u t how  this  come a b o u t ?  anyone i n d i c a t e d  t o you  there  a change? Yes:  0  No:  8  may  8  ii)  Do  you  a n t i c i p a t e you  will  feel  well  enough t o c o n t i n u e y o u r p r e s e n t  job?  Yes: iii)  Do  you  way  feel  8  No:  t h e s e changes are  a result  of  your  0  in  any  illness?  Yes:  0  No:  8  Comments In response t o the  question  the  home?"eight p a t i e n t s  responded  had  their  years.  jobs  part-time R.N. in  "Yes".  The  hospital patient-escort;  a p r i v a t e h o s p i t a l ; a teacher; and  a nurse's  Two  jobs  employed  A l l eight are  as  not  leave  the  follows:  were e x p e r i e n c i n g  All  to  head c a s h i e r  dietician  i n department  staying  eight patients  i n volunteer  work w h i c h  were employed were on  a change i n l i f e s t y l e  sick  from  or  t h e y w o u l d be after  intended  on  returning  income.  None o f  returned  t o work w h i c h depended on  treatments.  anxiety  A l l eight  going  a t home. t o work w i t h  a n t i c i p a t e d c h a n g e s i n work h o u r s , r e s p o n s i b i l i t i e s ,  conditions  a  mastectomy.  e i g h t p a t i e n t s who  t o work e v e r y day  patients  aide.  change b e c a u s e o f  and  outside  a desk c l e r k i n a h o t e l ;  p a t i e n t s were i n v o l v e d  All  no  you  i n a p r i v a t e h o s p i t a l ; a bank d e p a r t m e n t head;  store;  did  over f i v e  "Are  the  eight patients  patients  a b o u t k n o w i n g when t h e y  should  work  knew when recovery  showed some c o n c e r n return  t o work  and  and  55 q u e s t i o n e d r e s e a r c h e r on t h e e f f e c t s o f t r e a t m e n t might  be  a b l e to e s t i m a t e time of r e t u r n  T h i s concern about acceptance  returning  of the s i c k  economic s i t u a t i o n . she had She  Mrs.  "OAP  just  isn't  enough t o s t a r t  p e o p l e o v e r 65. as she  o v e r t h e work r o l e ,  G.  was  enough."  h e r new  and Mrs.  G. was  was  job.  wanted t o r e m a i n  which  she knew and  d i d n o t want a c h a n g e .  about  her appearance  G.  and  E . and M r s .  H.  some a m b i v a l e n c e  same j o b .  was  involved  E . who  almost  feel  to t h i s  job  She  i n t h e work  was  most  deciding  concerned  to wait  t o work.  b o t h worked t o s u p p l e m e n t  f a m i l y income b u t f e l t Mrs.  house.  s u g g e s t e d h e r mother  j o b and was  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  felt  employed  opposed  have "some e a s i e r "  Mrs.  their  waiting to  now  i n h e r new  on  k e e p h e r own  j o b i n a bank w h i c h  Mrs.  on  t h e o n l y p a t i e n t who  However, h e r d a u g h t e r  i t was  employers.  and  too s t r e s s f u l  for  felt  for their  they  t o work seemed t o depend  t o work t o s u p p o r t h e r s e l f ,  said  well  role  so  about  the  keeping  a t r e t i r e m e n t age  i n p u s h i n g h e a v y h o s p i t a l b e d s a t work.  the  (61)  She  was  was  d e c i d i n g w h e t h e r she  should look f o r a l i g h t e r  same h o s p i t a l as  she  l i k e d working  was  a f u l l - t i m e n u r s e and wondered i f she  Mrs.  H.  c o u l d work l e s s h o u r s job.  Mrs.  H.  j e o p a r d i z e her Three difficulty  was  there.  i n order to reduce  worried that  job i n the  the s t r e s s  the s t r e s s  of her  of working  might  health. p a t i e n t s , Mrs.  a c c e p t i n g the s i c k  E . , Mrs.  F.  and M r s .  I,  r o l e o v e r t h e work r o l e .  had These  56  p a t i e n t s had a l s o n e v e r been s e r i o u s l y  ill  be  i n adjusting.  a contributing factor Mrs.  to difficulty  F . went t o work a few h o u r s e a c h d a y t o p l a n  menues, a g a i n s t h e r d o c t o r ' s her  feet  b e f o r e w h i c h may  fora phlebitis  condition.  c a n ' t k e e p h e r a t home!" home a l l d a y .  express  w i s h e s t o keep h e r o f f Her h u s b a n d s a i d " I  Mrs. F. s a i d  "I just  can't  s i tat  T h e r e a r e t h i n g s t o be done a t work."  Her  h u s b a n d e x p l a i n e d t h a t " s h e d i d n ' t have t o go t o work b u t s h e ' s very  high  s t r u n g and n e e d s t o be d o i n g  indicated  to researcher that going  something."  Mrs. F.  t o work made h e r f e e l  that  t h i n g s were g e t t i n g b a c k t o n o r m a l . Mrs. on you  sick  leave.  know?"  The  She s a i d  "I feel  She a l s o f e l t  Mrs. 30's,  E . t a l k e d a b o u t h e r change i n l i f e s t y l e  school  teacher  full-time  an i n v a l i d , a t work.  w i t h no c h i l d r e n ,  f o r the l a s t  i n her  sixteen years.  d i a g n o s i s b r o u g h t t o M r s . I . a sudden c h a n g e i n l i f e s t y l e  which a c c o r d i n g  to doctor's  orders w i l l  S e p t e m b e r ' s new s c h o o l t e r m . "working" t o "housewife" and  "like  c u t o f f from h e r f r i e n d s  I . , a married  has taught  stranded",  since  says  this  Mrs. work r o l e  i sdifficult  from  f o r Mrs. I . t o accept  h e r own work image o f h e r s e l f  teacher".  J . , on t h e o t h e r  to sick  until  T h i s change i n l i f e s t y l e  change has a f f e c t e d  as a " h e a l t h y e n e r g e t i c  be p r o l o n g e d  hand, t o o k  r o l e more i n s t r i d e .  t h e change  from  She h a s h a d two o t h e r  o p e r a t i o n s b e f o r e w h i c h may c o n t r i b u t e t o h e r e a s e i n a d j u s t i n g . She  said  "I'm r e a l l y  e n j o y i n g my t i m e  a t home now, t h e y c a n  just wait  f o r me  a t work."  n o n c h a l e n t , Mrs. a b o u t when she  B.  the  could  you  a)  seemed t o c o n f i r m  return  following  s e c t i o n on  Do  tone  statement  to  drive  I f "Yes"  i s an  account of p a t i e n t s '  transportation  i n the  a car? are  Yes:  you  able  I f "No"  to drive  d o e s someone d r i v e  i)  I f "Yes"  a t the  Maxwell Evans  No:  9  7  No:  0  now?  Bus do  7  you?  who?  What t r a n s p o r t a t i o n  responses  questionnaire:  Yes:  c)  anxiety  work.  Yes: b)  her  sounds  Transportation  The to  J.'s  Although t h i s  you  9 or  husband o r  have t o y o u r  friends  treatments  Clinic? Husband:  10  Volunteer Driver: 4  Comments In seven of  the  change t h e i r  response to the patients ability  other nine patients  question  responded to drive  who  o t h e r s d r o v e them a week a f t e r on  "going out"  than l a c k  of  were u s u a l l y  you The  desire  drive  " t o go  to  did  out".  not  The  t o o k a bus  operation.  connected  car?"  operation  drive, either the  a  or  Curtailments  self-image  rather  transportation.  However, t h e who  "Yes".  nor  d i d not  "Do  findings  show t h a t  mentioned embarrassment i n g o i n g out  the  four  since  the  patients operation,  58 i.e.  M r s . E . , M r s . G., M r s . L . and M r s . M.,  a car.  One may  speculate  embarrassed by u s i n g by  using  their  t h a t p a t i e n t s may be more  public transportation  own c a r ,  d i d not drive  o r perhaps these  and w a l k i n g  four  than  patients 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.  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 N o t e : S e c t i o n IV i s a l s o The P r i m a r y C a r e - G i v e r Interview Schedule. T h e r e f o r e , t h e q u e s t i o n s i n S e c t i o n IV, 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 , were a s k e d o f 16 p a t i e n t s and 14 p r i m a r y c a r e - g i v e r s . This  section  i s divided  i n t o three  A.  Main Concerns o f P a t i e n t s  B.  Practical  parts:  and P r i m a r y  Care-Givers  Changes i n D a i l y A c t i v i t i e s ,  Family  R o l e s and R e s p o n s i b i l i t i e s C.  Services  Received  and S e r v i c e s  T h e r e were some c o m m o n a l i t i e s  Requested  i n t h e p a t i e n t s ' and  f a m i l y members' r e s p o n s e s t o t h e q u e s t i o n s  "In general  you  f a m i l y have a t  tell  this  me  t h e main c o n c e r n s y o u and y o u r  t i m e ? " and "What a r e t h e m o s t i m p o r t a n t  w h i c h y o u have n o t i c e d d a t a may  i n your f a m i l y ? "  indicate differences  concerns as w e l l services,  Therefore,  This  will  patients' of  change.  and p r i m a r y  of support  r e s p o n s e s and t h e i r  r e s p o n s e s t o t h e s e two q u e s t i o n s be f o l l o w e d  as t h i s  and h e r f a m i l y ' s  a s i n d i v i d u a l n e e d s and t i m i n g  care-givers' listing  c h a n g e s i f any  i n the patient's  a l l individual patient  by a summary  care-givers'  could  will  primary  be n o t e d .  and c o m p a r i s o n o f  m a j o r c o n c e r n s and  perceptions  59  A.  Main Concerns Primary  The primary of  and  Their  Care-Givers  following  care-givers'  of Patients  is a listing  responses  of p a t i e n t s '  and  their  t o the questions i n S e c t i o n A  i n t e r v i e w s c h e d u l e under the heading  IV, F a m i l y R o l e s  and  Responsibilities: 1.  2.  I n g e n e r a l c o u l d you your  family  your  spouse,  have a t t h i s daughter,  me time  t h e main c o n c e r n s s i n c e you  mother) has  found  you out  any,  you have n o t i c e d  Mrs.  A.  - Stage  i n your  and (or  breast cancer?  S i n c e t h e d i a g n o s i s what a r e t h e most i m p o r t a n t if  (1)  tell  changes,  family?  II  Patient 1.  Major  concerns:  "No D i s n e y l a n d t r i p w i t h daughter. Cancelled.  2.  Major  changes:  "None. Shock a t b e g i n n i n g , u n n a t u r a l i f i t were n o t ? "  No  (2)  Mrs.  i n t e r v i e w w i t h husband, the p r i m a r y  B.  - Stage  care-giver.  II  Patient 1.  Major  concerns:  2.  Major  changes:  Primary  care-giver:  "Not a d a r n t h i n g , no no f e e l i n g . " "No". Husband  sense,  60  1.  Major concerns:  " T h i s h i t us l i k e a t i m e 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. - S t a g e I  Patient 1.  Major  concerns:  "Hard t o a n s w e r - h u s b a n d and c h i l d r e n have been w o n d e r f u l , more f r i e n d s now."  2.  Major  changes:  " D a u g h t e r gave up m o v i n g i n t o own a p a r t m e n t , 18 y e a r 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 t o h e l p . "  Primary  care-giver:  Husband  1.  Major  concerns:  "Her g e n e r a l w e l l - b e i n g . "  2.  Major  changes:  "More t o g e t h e r n e s s , w i f e g e t s down a b i t , we t r y t o s t o p those f e e l i n g s . "  M r s . D.  - Stage I  Patient 1.  Major  2.  Major changes:  Primary No  concerns;  care-giver: interview  "None" "None" Husband  61 (5)  Mrs.  E. - Stage I I  Patient 1.  Major  concerns:  "How l o n g do y o u w a i t f o r the c o b a l t treatments? How long before treatments are over? Do n o t s l e e p w e l l . Waiting also f o r prosthesis feeling like invalid."  2.  Major  changes:  "Waiting".  Primary  (6)  care-giver:  Husband  1.  Major  concerns:  "Wife w o r r i e d and on e d g e , u p t i g h t , y o u know."  2.  Major  changes:  "Wife r e a l l y u p s e t t h r e e d a y s ago, s u r g e o n drew f l u i d f r o m b r e a s t , now n o t so w o r r i e d . "  M r s . F. - S t a g e  I  Patient 1.  Major  concerns:  2.  Major  changes:  Primary  care-giver:  "In o u r age g r o u p n o t a s many t h i n g s a r e g o i n g o n ; when y o u have s o m e t h i n g l i k e t h i s y o u f i n d o u t how much your f a m i l y t h i n k s o f you." " F a m i l y shows c o n c e r n . " Husband  1.  Major  concerns:  "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 t h e n y o u 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 t h e d o c t o r ' s found i t early."  2.  Major  changes:  "Family c l o s e r , daughter-inlaw c o o k s e v e r y m e a l n e x t door."  62 (7)  M r s . G.  - Stage I  Patient 1.  Major concerns:  ' S p o i l e d h o l i d a y and when can I r e t u r n t o work? If you cannot support y o u r s e l f s o o n e r o r l a t e r y o u have to s e l l t h e house!"  Major  ' F a m i l y p r e t t y s c a r e d ; my brother i n Sardis very worried."  Primary  (8)  changes  care-giver  Daughter  1.  Major concerns  'Main c o n c e r n i s w h e t h e r w i l l have i t . "  2.  Major  'Shocked, e d u c a t e d enough t h a t aware i t i s n o t f a t a l , optimistic."  Mrs.  H.  changes:  I  - Stage I  Patient 1.  Major c o n c e r n s :  "Doubt i n y o u r m i n d , s t i l l u n r e a l , i t does n o t seem l i k e i t i s h a p p e n i n g t o me. Before the o p e r a t i o n , I t h o u g h t I would go o u t o f my mind w i t h t h e i d e a o f h a v i n g cancer. B e t t e r - now."  2.  Major  "My h u s b a n d i s h e l p i n g than u s u a l . "  changes:  Primary care-giver:  more  Husband  1.  Major concerns:  "Shock a t t h e b e g i n n i n g , t h e n you t h i n k o f w i f e ' s c o m f o r t , 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  " C l o s e 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 . "  changes:  63  (9)  Mrs. I . - Stage I  Patient 1.  Major c o n c e r n s :  "Long t e r m s u r v i v a l , knowing the extent of the cancer, future l i f e . "  2.  Major  "None"  changes:  Primary c a r e - g i v e r :  (10)  Husband  1.  Major concerns:  "My w i f e g e t t i n g h e r h e a d together - adjusting to new s h o c k . "  2.  Major  "None"  changes:  Mrs. J . - Stage 1 Patient 1.  Major concerns:  "Recovery from  sickness,  h a r d e s t on y o u n g e s t d a u g h t e r who d i d more c o o k i n g and s h o p p i n g , 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:  Primary c a r e - g i v e r :  "Closer  family."  Family  1.  Major concerns:  "Did they get i t a l l out?  2.  Major changes:  "Closer  family  now."  64 (11)  M r s . K. - S t a g e I I I  Patient 1.  Major concerns:  "Whether t r e a t m e n t w i l l be t o t a l l y e f f e c t i v e , thankful f o r s i s t e r w o u l d have f o u n d t h i s time v e r y d i f f i c u l t without her."  2.  Major  "Disruption to sister's l i f e , l e a v i n g husband who i s n o t well. Nuisance of clothes because o f tenderness."  changes:  Primary c a r e - g i v e r :  (12)  Sister  1.  Major concerns:  "Shock s t i l l , s i s t e r h e a l t h y and a c t i v e ; to grasp."  2.  Major  "I w i l l sister  changes:  always difficult  extend v i s i t u n t i l s t a r t s treatments."  Mrs. L. - Stage I  Patient 1.  Major concerns:  "The e f f e c t s o f t r e a t m e n t 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 t o n o r m a l . "  2.  Major  "None"  Primary  changes:  care-giver:  Husband  1.  Major concerns:  "To show l o v e , d e v o t i o n and togetherness."  2.  Major  "Always had a good f a m i l y l i f e and w i l l r e m a i n t h a t way. "  changes:  65  (13)  Mrs.  M.  - Stage  IV  Patient 1.  Major  concerns:  "None"  2.  Major  changes:  "None"  Primary  (14)  care-giver:  1.  Major  concerns:  2.  Major  changes:  Mrs.  N.  - Stage  Husband "Shock t o b e g i n 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 h e r l i f e complete. I know t h e r e i s no c u r e f o r c a n c e r o f t h e l i v e r . T h e r e i s no r e a s o n why you l i v e a c e r t a i n time." " D i f f i c u l t t i m e s a h e a d , some i d e a what i s i n v o l v e d f r o m doctors. I am g o i n g t o make e v e r y t h i n g as a g r e e a b l e and e a s y as p o s s i b l e f o r my w i f e . "  I  Patient 1.  Major  concerns:  "Hope t r e a t m e n t s w i l l work, not depressed, not worrying."  2.  Major  changes:  "None.  Family a b i t closer."  c a r e - g i v e r : D a u g h t e r (Husband N o r w e g i a n 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 t h e y g o t i t a l l ? I have Major concerns: t a l k e d to a l l the d o c t o r s . "  Primary 1.  Major  changes:  "Change i n m o t h e r ' s  health.  66 (15)  M r s . O. - S t a g e I  Patient 1.  Major  concerns:  " I hope my  2.  Major  changes:  "None"  Primary c a r e - g i v e r :  (16)  tests  are  O.K."  Husband  1.  Major  concerns:  "I b e l i e v e i n d o c t o r s , had a b r o k e n b a c k h a l f my stomach out. My s o n 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 n o t good f o r y o u and i t i s n o t n e c e s s a r y . "  2.  Major  changes  "None"  M r s . P. - S t a g e I  Patient 1.  Major  concerns:  "Going as s t r o n g as e v e r , w a l k i n g more, wonder i f I s h o u l d s t a y w i t h my s i s t e r again a f t e r operation? She i s a v e r y b u s y , v e r y b u s y woman."  2.  Major  changes:  "No c h a n g e s  Primary  at a l l . "  care-giver: Sister  1.  Major  concerns:  "Want h e r t o g e t t h e b e s t o f treatment."  2.  Major  changes:  "None"  67 Comments Some c o m m o n a l i t i e s were f o u n d  i n primary  r e s p o n s e s t o t h e q u e s t i o n "What a r e y o u r T h i r t e e n primary c a r e - g i v e r s mentioned  care-givers  greatest  concerns?"  the patients' well-being.  E i g h t p r i m a r y 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 in  helping  the p a t i e n t .  M r s . G.'s d a u g h t e r  as s h e was most c o n c e r n e d cancer. out  the patient In  important  role  was an e x c e p t i o n  a b o u t h e r own c h a n c e s  F i v e primary c a r e - g i v e r s mentioned  new  of getting  t h e shock  of finding  had c a n c e r .  r e s p o n s e t o t h e q u e s t i o n "What a r e t h e most  changes?"  f o u r primary c a r e - g i v e r s mentioned t h e  f a m i l y was " c l o s e r " . with the patient's  Three  p r i m a r y c a r e - g i v e r s were  anxiety or depression.  concerned  Mr. F . was  concerned  a b o u t h i s w i f e ' s a n x i e t y , i . e . h e r g o i n g t o work when s h e d i d not  have t o go and h e r s i t t i n g  puzzles.  Mr. I . ' s c o n c e r n was t h a t h i s w i f e  together". and  up a t 3 a.m.  Mr. C.'s c o n c e r n was a b o u t  his trying  doing  " g e t h e r head  h i s wife  t o "stop those f e e l i n g s " .  crossword  "getting  down"  Mr. M. on t h e o t h e r  hand, r e c o u n t e d how a m a z i n g l y w e l l h i s w i f e was h a n d l i n g t h i s situation with  a n d seemed t o c o n s i d e r h e r an i n s p i r a t i o n  "tough  times ahead".  A l l 14 p r i m a r y c a r e - g i v e r s  t h e r e were no m a j o r c h a n g e s i n f a m i l y a c t i v i t i e s , responsibilities.  The f o l l o w i n g c o m m o n a l i t i e s  p a t i e n t ' s r e s p o n s e s t o "What a r e y o u r g r e a t e s t you  i n dealing  found o u t you have c a n c e r ? " :  said  r o l e s and  were f o u n d i n concerns  since  68 S e v e n p a t i e n t s were c o n c e r n e d  about  their  t r e a t m e n t s and  rehabilitation; F i v e were c o n c e r n e d and  about  family  r o l e s and  responsibilities  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 h a d s o c i o e c o n o m i c c o n c e r n s ; and Three  s a i d t h e y had no c o n c e r n s . In response  t o t h e q u e s t i o n "What a r e t h e most  i m p o r t a n t c h a n g e s i f any y o u h a v e n o t i c e d these  commonalities  Three p a t i e n t s  were  i n your  family?"  found;  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 m e n t i o n e d Two p a t i e n t s  said their  Nine p a t i e n t s A comparison by  their  f a m i l i e s were showing  f a m i l y was c l o s e r ; and  s a i d t h e r e were no of the concerns  the p a t i e n t  concern;  changes.  and c h a n g e s  noted  and t h o s e n o t e d by h e r f a m i l y  Patient  concerns  seem t o be s h o r t - t e r m f u t u r e  oriented  focussing  on a n t i c i p a t i o n o f t r e a t m e n t , e f f e c t i v e n e s s and  returning  t o normal  daily  activities.  F a m i l y c o n c e r n s , on t h e  o t h e r h a n d , seem t o be l o n g - t e r m f u t u r e on t h e i r new  role i n helping  on t h e p a t i e n t ' s  the patient  long-term prognosis.  oriented, fully  focussing  r e c o v e r , and  69 Practical  Changes i n D a i l y  Activities,  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  following  i s an a c c o u n t  care-givers'  responses  t o t h e t a b l e and  interview  t o t h e t a b l e was  II  The  patient  identical  primary  q u e s t i o n s i n the  and  her  i n every  f a m i l y member  Note:  response  case.  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 member and  TABLE  and  s c h e d u l e w h i c h w o u l d i n d i c a t e a change i n f a m i l y  responsibilities.  Table  of p a t i e n t s '  o t h e r s b e f o r e the  of each  family  diagnosis.  I f p a t i e n t and p r i m a r y c a r e - g i v e r b o t h d i d same j o b , b o t h were c o u n t e d . Therefore t a b l e s do n o t add up t o 16 f o r e a c h r e s p o n s i b i l i t y b u t r a t h e r t o how many were i n v o l v e d i n e a c h r e s p o n s i b i l i t y f o r a l l 16 households.  I I : BEFORE DIAGNOSIS:  1.  Earning  income  2.  Sitting  down t o  pay  Patient  Primary CareGiver  Children  8  10  -  18  9  7  -  16  1  19  bills  3.  Washing d i s h e s  12  6  4.  Meals  16  2  5. 6.  House c l e a n i n g Shopping (Groceries) (Supplies)  16 10  2 8  -  7  Y a r d work  8  10  2  8  V o l u n t e e r work  2  2  -  9.  M a k i n g aarrrraannggee-ments f o r s o c i a l v i s i t s f o r the family  12  2  -  "93  49  3  TOTALS  Neighbours  Totals  18 18 18  1  21 4 I  I  4  146  70 Is  there  some a r e a  w h i c h i s n o t on t h i s If  table?  "Yes" p l e a s e  Table I I I  Please  o f change i n r e s p o n s i b i l i t i e s Yes:  No: 16  add i t t o t h e t a b l e as " O t h e r " .  indicate responsibilities  member and o t h e r s the  0  after  o f each  t h e mastectomy  family  during  s e c o n d week home f r o m t h e h o s p i t a l .  TABLE I I I : AFTER DIAGNOSIS: Patient  Primary CareGivers  10  8  Neighbours  Totals  -  18  -  16  2  19  1.  Earning  2.  S i t t i n g down t o pay b i l l s  9  3.  Washing  7  4.  Meals  5.  House  6.  Shopping (Groceries) (Supplies)  5  10  2  1  18  7.  Y a r d Work  6  11  3  1  21  8.  Volunteer  9.  3.  income  Children  dishes  cleaning  7 10  8  7  3  19  6  9  3  18  2  2  Making a r r a n g e ments f o r s o c i a l v i s i t s f o r the family  12  2  TOTALS  63  67  work  Do y o u f e e l y o u w i l l  be a b l e  household r e s p o n s i b i l i t i e s before  4  -  14  2  13  t o c a r r y on y o u r  and c h o r e s ?  regular  The same a s  the diagnosis? 15  patients  14 p r i m a r y  care-givers  146  71  4.  N e a r l y as w e l l ?  1 patient  0 primary  care-givers  Not  0 patient  0 primary  care-givers  as w e l l ?  I f c h a n g e s were n o t e d a)  How  concerned  these Not  b)  i n t h e above  a r e you r i g h t  table:  now  about  each  of  changes?  at a l l ?  16 p a t i e n t s  12 p r i m a r y  Somewhat?  0 patients  1 primary  care-giver  A great deal?  0 patients  0 primary  care-givers  A r e you More:  concerned 0  The  about  t h e above  same:  care-givers or Less:  care-givers  responsibilities?  16 p a t i e n t s and  14  primary  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 ? If (or  more i s t h i s your)  concern connected  illness?  to your w i f e ' s , e t c .  Yes:  No:  N.A.  All  respondents  5.  C o u l d you talked All in  tell  about  me  which  o f t h e f a m i l y c h a n g e s we  i s o f most c o n c e r n t o you  respondents mentioned  Part A of Section  their  now?  have  Next?  perceptions of  Etc. change  IV.  Comments During families towards  the f i r s t  two  weeks a f t e r  re-organized responsibilities husbands and/or  children,  away f r o m  sisters,  By t h e t i m e o f t h e i n t e r v i e w , u s u a l l y  t h e mastectomy,  two  the  f r i e n d s or  patient neighbours  t o f o u r weeks  after  72  t h e mastectomy t h e returning  to  Living  F o u r h u s b a n d s and  with t h e i r  were any  children said time of  C's  look  after  the  interview.  d a u g h t e r was  household  children.  Mrs.  responsibilities.  daughter postponed plans the  h u s b a n d s and  t h e y were d o i n g more i n  changes i n f a m i l y  l a t e r mentioned her  Mrs.  were  Husband  l i v e d with their  household chores a t the  she  that r e s p o n s i b i l i t i e s  Children.  Five patients  there  said  normal.  Patients and  family  helping  to  f o r a few  leave  with  denied  However, cleaning.  home so  weeks a f t e r  A.  her  she  could  mother's  operation. Mr.  C.  was  selling  the  "trying  to help"  h o u s e and  t h e m o r n i n g s and interview, two  doing  a l l the  their  son  cleaning  was  doing yard  w h i c h amazed Mrs.  C.  t o o k an  nap.  she  was  still  weeks ago,  but  was  afternoon recovering  starting  in preparation  Mrs. At  C.  slept  the  from the  t o cook t h e  work  for  and in in  time of  operation  the of  meals.  Couples Seven p a t i e n t s their in  l i v e d with their  primary c a r e - g i v e r s .  their  noticed  husbands h e l p i n g no  change.  Four p a t i e n t s with cleaning  Mr.  L.  c o o k e d and  Mrs.  F.  traded  the  evening meal.  her  daughter-in-law next  h u s b a n d s who  door.  noticed  while  a  three  washed t h e  were change patients  dishes  meals f o r d i s h washing  for with  Mr. N. k e p t h o u s e f o r h i m s e l f w h i l e h i s w i f e was s t a y i n g with her daughter to n o t i c e  during treatments.  Couples  l e s s change t h a n f a m i l i e s w i t h c h i l d r e n  responsibilities,  p o s s i b l y because  there i s less  tended  i n household t o do i n h o u s e -  h o l d s o f two p e o p l e .  The  Widows  The  t h r e e widows l i v e d  l i v i n g with their Mrs.  own  time  her s i s t e r  arrived  f o r two weeks from  lived  t o h e r own a p a r t m e n t .  by h e r d a u g h t e r  who c o o k e d  nearby  after  the I n t e r i o r , a t  she moved b a c k t o h e r own a p a r t m e n t .  s t a y e d w i t h h e r s i s t e r who returned  care-givers  families.  K. s t a y e d w i t h h e r f r i e n d  her o p e r a t i o n u n t i l which  alone, with primary  M r s . P.  f o r two weeks and t h e n  M r s . G. was v i s i t e d  e a c h day  some o f h e r m e a l s and d i d t h e  shopping.  In response  t o t h e q u e s t i o n " W i l l y o u be a b l e t o  c a r r y on y o u r r e g u l a r h o u s e h o l d r e s p o n s i b i l i t i e s 15 p a t i e n t s and a l l 14 p r i m a r y c a r e - g i v e r s same as b e f o r e d i a g n o s i s " . " n e a r l y as w e l l " immaculate responded right The  "Not a t a l l "  patients'  responded "the  One p a t i e n t , M r s . H.,  said  and seemed t o t h e r e s e a r c h e r t o be an  house-keeper.  now a b o u t  and c h o r e s ? "  A l l p a t i e n t s and p r i m a r y  t o t h e q u e s t i o n "How  changes i n f a m i l y  and f a m i l y members'  roles  care-givers  concerned  a r e you  and r e s p o n s i b i l i t i e s ? "  response  to the table  noting  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 patient in  and  family  primary care-giver  reponsibilities.  primary care-givers  are  jibed.  aware o f  the  Fifteen patients  s a i d t h e y had  no  Therefore, same c h a n g e s  and  fourteen  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 Mrs.  K.'s  felt  sister,  responsibilities. manage on Interior  her  own  c h a n g e s were t e m p o r a r y . had She  worried  a b o u t w h e t h e r Mrs.  t r e a t m e n t s when she  sick  the  d e t a i l s of  considerable members.  i n d i c a t e no family  life  This  The care-givers' services 6.  given  d i s c r e p a n c y may  R e q u e s t e d and following  to  the  patients'  to  the  responsibilities,  researcher  indicated  indicate denial  be  a way of  private  Services  i s an  of keeping  other  as  a means  the  family  family of  interview  concerns.  Received  account of p a t i e n t s '  r e s p o n s e s t o q u e s t i o n s on  services  and  primary  received  and  requested:  Have you (if  and  change i n r o l e and  away f r o m a p a i n f u l d i s c u s s i o n  Services  could  returned  c h a n g e s i n r e s p o n s i b i l i t i e s t a k e n by  c o p i n g w i t h c h a n g e , o r may  C.  K.  husband.  Although both primary care-giver r e s p o n s e s would  respondent,  a major concern about p r a c t i c a l household  during  t o nurse her  One  "Yes"  when).  or  your f a m i l y  name t h e  had  any  s e r v i c e , who  of  the  following  provided  services  this service  and  75  Transportation  4  0  Household help  0  0  Information  3  0  0 0  0 0  0  0  3 16  0 0  Counselling:  services Individual Family  Groups w i t h o t h e r p a t i e n t s and f a m i l i e s Other  Did  VON Home N u r s i n g Mastectomy v o l u n teers  you r e c e i v e  these  Patient:  s e r v i c e s when y o u wanted Yes  16  Primary Care-Giver:  0  Would a n y o f t h e above s e r v i c e s  If  No  them? 0 0  be h e l p f u l t o y o u now?  Patient:  6  10  Primary Care-Giver:  1  13  " Y e s " w h i c h s e r v i c e w o u l d be m o s t h e l p f u l ?  Next?  Etc?  Patients: 1.  Clinic  2.  Earlier notification treatment  3.  Pre-operative counselling  2  4.  Share e x p e r i e n c e s patients  4  Primary 1.  transportation  service about  with other  2 2  Care-Givers:  Share e x p e r i e n c e w i t h o t h e r primary care-giver  1  Comments In  response t o the question  "What s e r v i c e s  have y o u  received?  a l l sixteen patients said  Mastectomy V o l u n t e e r this  service very  helpful. To  the  were i n h o s p i t a l and  Four p a t i e n t s i n t e r v i e w e d  at the  Clinic  Three p a t i e n t s s a i d "Did you  which they  they  r e c e i v e these  responded the  "What s e r v i c e s w o u l d be  "None".  Transportation  Clinic  would  telephone and  was  felt  call,  Mrs.  before  A.  and  service.  Mrs.  Mrs.  H.  they  and  had  E.  c o u l d n o t make any  both mentioned  this  9.  they  f a m i l y members i n t h e  felt  wanted  In r e s p o n s e  Mrs.  K.  using  wished  the  for  start  the  s h o r t term p l a n s .  w o u l d have  to  patients  were c o n s i d e r i n g  Mr.  felt  Mrs.  t i m e f o r them  appreciated  M.  they felt  had  already  Changes i n R e l a t i o n s h i p s and  d i d not he  would  same s i t u a t i o n .  t h a t t h e mastectomy v o l u n t e e r  need because they  The  nursing.  counselling.  to other  Family  "Yes".  t h e most s t r e s s f u l  s e r v i c e s o r more i n f o r m a t i o n .  patients  home  s e r v i c e s when you  and  Thirteen primary care-givers  talk  very  t o s t a y a t home t o w a i t  t h e m a s t e c t o m y and  pre-operative  any  information  h e l p f u l ? " ten B.  were  l e t them know e a r l i e r when t r e a t m e n t s w o u l d  because they  D.  Mrs.  a  very  found  r e c e i v e d VON  them?", a l l s i x t e e n p a t i e n t s r e s p o n d e d the q u e s t i o n  were  by  found  Three p a t i e n t s r e c e i v e d medical  doctors  question  were v i s i t e d  t r a n s p o r t a t i o n s e r v i c e and  for this.  about t h e i r  they  helpful.  receiving Clinic's grateful  while  they  d i d not  successfully  need like  These q u i t e meet  recovered.  with  Friends  f o l l o w i n g are  p a t i e n t s ' responses to  to  questions  77 in  S e c t i o n V, Changes 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  friends, 1.  found  i n the interview  Since you found that  your  out that  relationships  and  schedule.  you have have  c a n c e r do you  find  changed w i t h any o f t h e  following:  Yes:  8  No:  8  Spouse Child Parent Doctors Friends Relatives Other (Specify If  "Yes" c o u l d you t e l l  found 2.  me  any more a b o u t t h i s ?  i n "Comments".  Do y o u s e e a n y m o r e o r l e s s More: If  m o r e , who  10  usually  Spouse: i)  ii)  Is this  initiates  0  3  friends  now?  About  t h e same:  3  these contacts?  Self: Other:  0 0  Friends:  Yes:  16  No:  16  change? 0  me m o r e a b o u t i t ?  Responses  i n "Comments".  "Yes" t o any change  about these a)  a  o f your  Less:  I f "Yes" c o u l d you t e l l found  If  Responses  changes?  I f concerned More:  above, a r e you concerned A great deal: Not a t a l l :  0 16  Some: 0  a r e you w o r r i e d about these 0  The same: NA:  than before d i a g n o s i s ?  0 16  or worried  changes  Less:  0  3.  4.  Have y o u been a b l e t o h a n d l e  t h e s e changes  serious d i f f i c u l t y ?  16  Do y o u f e e l irritable,  NA:  y o u r own b e h a v i o u r more c h e e r f u l  Yes:  0  toward  i)  illness?  No:  Have y o u t o l d  this?  you have Your a)  cancer? children  connected  A great deal:  0  Somewhat:  0  Not  0  NA:  16  at a l l : about  t h e s e changes i n your  No c o n c e r n s : A great deal:  any o f y o u r  16  response  any more a b o u t  Do y o u have any c o n c e r n behaviour?  5.  0  To what e x t e n t do y o u s e e t h e s e c h a n g e s as t o your  ii)  No  me  0  any o f t h e f o l l o w i n g :  Spouse Child Parent Doctors Friends Relatives Other (Specify) "Yes" c o u l d y o u t e l l  No:  h a s c h a n g e d , e . g . more  Yes:  If  without  family,  0 0  Some: NA:  f r i e n d s o r work  0 16  associates  Yes  14  No  0  NA  2  b)  Brothers-Sisters  Yes  8  No  0  NA  8  c)  Parents  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)  Supervisor  Yes  6  No  2  NA  8  ( i f alive)  a t work  " I w o u l d now  like  to talk  a b o u t who  has h e l p e d y o u d e a l  w i t h t h e k i n d s o f c h a n g e s we have b e e n d i s c u s s i n g interview."  i n this  79 6.  I f possible,  i n order of importance,  and  how t h e y h e l p y o u ( d o n o t r e a d  indicate  First Spouse Child Parents Doctors A. M a x w e l l E v a n s Clinic Staff Friends Clergyman Relatives Other (Specify) 7.  Regarding the  the person(s)  same p e r s o n ( s )  t h o s e who  Spouse: Sister:  help  list):  Choice  Second  13 2  Choice  Doctors: 15 Clergyman and Friends: 1  who h e l p ( s ) y o u m o s t now, i s t h i 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 ? Yes:  (If  list  13  No:  "No" s p e c i f y w h o h e l p e d m o s t b e f o r e - H e l p e d  If  "Yes" have you n o t i c e d  do  f o r y o u now?  a change i n t h i n g s Yes:  3 myself)  (he/they)  3  No:  13  Comments In you  response  have cancer  t o t h e q u e s t i o n "Since you found  do y o u f i n d  that  your  changed w i t h any o f t h e f o l l o w i n g ? " "Yes".  eight  patients  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  mentioned fore  relationships  changes  i n their  a l l 16 p a t i e n t s  16  patients  of  these  said  changes.  said  out that  have responded "No"  relationships with others.  noticed  some c h a n g e i n t h i s  they were concerned  "Not a t a l l "  also There-  area. A l l about  any  80  R e l a t i o n s h i p s with Primary Four wives, said  they  primary  felt  Care-Givers  M r s . E . , M r s . F . , M r s . J . , and M r s . L . ,  closer  to their  care-givers.  h u s b a n d s ' who were  A description  o f these  their  four  cases  follows. Mr. E . h a d t o l d M r s . E . s h e was he was g o i n g t o " p u t h e r i n t h e d r i e r " This  statement  h a d become  f r o m Mr. and M r s . E . booster  quit  feeling  point  said  anxious  t h e answer was  and d e p r e s s e d  a t t h e time  F.'s husband asked  "Now  get with i t ,  She was  now  a great support  t o Mrs. L.  hospital  of interview. t o see t h e s c a r t h e minute  s a y i n g "come o n , I want t o see i t " .  a great support  look a t h e r s e l f  t o M r s . F. who  and d i d n o t u n t i l  d i d n o t want  s e v e r a l days a f t e r her  saw t h e s c a r . Mrs.  C. and M r s . D. who  h u s b a n d s , were b o t h  menopausal. their  h e r husband s a i d  to interviewer.  had c r i e d when she l o o k e d a t t h e s c a r and seemed  H i s a t t i t u d e was  their  i t twice  r e m o d e l l i n g the house.  came home f r o m  husband  her out.  so s o r r y f o r y o u r s e l f " w h i c h had been a t u r n i n g  him w i t h  Mrs.  to  seemed q u i t e d e p r e s s e d  J . t o l d me  Mr. L . s a i d  she  a f a m i l y joke as I heard  i n her d e p r e s s i o n about t h e o p e r a t i o n .  helping  who  b e f o r e he t o o k  Mr. E . ' s j o k i n g manner was a g r e a t m o r a l e  t o M r s . E . who Mrs.  a "wet b l a n k e t " and  a b o u t t h e same a g e , 4 8 - 4 9  The m a s t e c t o m y was  relationships with  had n o t shown t h e s c a r t o  creating  spouses.  and p r e -  some c h a n g e s i n  M r s . C. f e l t  " i t was  more  81 my  d e c i s i o n " and  the  scar.  For  she  two  tranquilizers,  " j u s t was  as h e r  a l a r m e d by h e r  doctor  very  the  t h a t she  A week a f t e r  people  wife  of  said  and  friends  Mrs. has  not  ago.  had  She  D.  this  had  her  p a r t as  to handle  several may  times  shown t h e  as  has  alone".  this as  her  worried very  concerned  to  Mrs.  C.  depressed  take  Her  time."  C.'s  with  C.  much b e t t e r she  looked.  husband  The  relationships  her  the  with  husband.  s c a r to her  husband  and  s i x weeks  same week  and  alone  s p e c u l a t i o n on  until Mrs.  She  seems t o be She  q u i t e concerned  d e s c r i b e d her  She  i n her mind.  her  12  mother.  D.  a l s o mentioned  year  two  certainly  seemed t o s e p a r a t e  Mrs.  he about  marriage  e x p l a i n i n g t h a t the  sexual r e l a t i o n s h i p but  about her  not  d i s c u s s e d w i t h h e r husband why  a rock"  about f r i g h t e n i n g  be  not  her m a r i t a l r e l a t i o n s h i p . clearly  been  h u s b a n d i s l e a v i n g me  situation.  "like  C.  s i n c e h e r mastectomy  "my  on  would  incident.  o v a r i e s removed d u r i n g  she  have a f f e c t e d  areas  had  This explanation i s only  " l e a v i n g her  how  not  situation  I get b e t t e r . "  is  has  particularly  Mrs.  husband  t h e mastectomy Mrs.  " i twill  sexual r e l a t i o n s  explains the  Martin's  and  C. was  natural.  m e n t i o n e d how  t o l d me  s u p p o r t i v e and  told  as t h i s was  m a s t e c t o m y seems t o have i m p r o v e d M r s . family  t o show h e r  experience  d o c t o r had  impression  went t o a p a r t y and  was  The  the o p e r a t i o n .  B o t h h u s b a n d and  felt  depression  gave r e s e a r c h e r the before  ready"  weeks p o s t m a s t e c t o m y , M r s .  emotionally upsetting. be  not  these  operations not two  she  was  o l d d a u g h t e r who  was  82 The  t h r e e widows seemed a n x i o u s  d e p e n d e n t on t h e i r mentioned lives.  P.'s  second  r e l a t i o n s h i p with her should  sister.  after  her  alone  i n her apartment,  from her  operation.  s i c k husband.  She  imposing  on  their  affecting  was  K.  each  busy  her  d e c i d i n g whether  s t a y i n g w i t h her Mrs.  who  f o r two  she weeks  d i d n o t want t o s t a y  was  concerned  The  researcher speculates that  longer the primary c a r e - g i v e r t h e more a n x i o u s  about  mastectomy was  impose on h e r a g a i n by second  being  p r i m a r y c a r e - g i v e r s f o r t o o l o n g and  t h e y were c o n c e r n e d  Mrs.  about  about  keeping her  sister the  i s requested to provide help  t h e s i n g l e p e r s o n becomes a b o u t  creating  an  imposition. Four p a t i e n t s , Mrs. were f r u s t r a t e d  by t h e f a c t  A.,  Mrs.  F., M r s .  I . , Mrs.  t h e y c o u l d n o t do more and  were  b e c o m i n g someone f o r p e o p l e t o " f u s s o v e r " .  Mrs.  that  t o s e e i f she  was  " h e r m o t h e r and  telephoned d a i l y  a l l r i g h t " which annoyed h e r .  she has am  sister  to t e l l  perfectly  p e o p l e who  telephone  F.  says  "my  husband  want" w h i c h seemed t o u p s e t h e r . t o pamper me,  speculates that of  the  sick  members who, the p a t i e n t  M.told  "just  do  mentioned  researcher  not worry,  I  a l l right."  Mrs.  tried  Mrs.  I.  M.,  role  this and  but  Mrs.  A.  does a n y t h i n g I  said  "my  I would not s i t s t i l l . "  a n n o y a n c e may  be  connected  some r o l e - r e v e r s a l  i n taking anxious.  s p o i l s me  the r o l e  on  children  The  researcher  with discomfort  the p a r t of  o f m o t h e r and  n u r s e , may  Moreover, although cancer  is a  family make  serious  83 disease, few  t h e r e 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  serious complications.  Therefore  feel  sympathy f o r h e r i l l n e s s  need  some u n d e r s t a n d i n g  with  t h e p a t i e n t may n o t  i s warranted  although  o f her f e a r s about h a v i n g  she d o e s  breast  cancer. Three p a t i e n t s , their  difficulty  M r s . F . , M r s . H., and M r s . I . m e n t i o n e d  i n "not Overdoing"  and b e c o m i n g t i r e d .  h u s b a n d s o f t h e s e p a t i e n t s seemed aware o f t h i s felt  r e s p o n s i b l e t o monitor  seemed t o c h a n g e t h e i r  t h e i r wives'  relationships.  r e s e a r c h e r w h e t h e r he was d o i n g t h e h o u s e and seemed a n x i o u s who had f i v e  children,  house-keeper, baked bread g a r d e n and f o r e s t . about the garden. and  tended  c o n c e r n and  activities,  t o o much o r t o o l i t t l e i n His wife  a t home, was an e x c e l l e n t  e v e r y week and k e p t  2% a c r e s o f  C u r r e n t l y M r s . H. was a n x i o u s , She was f r u s t r a t e d  t o "overdo i t " .  which  Mr. H. a s k e d t h e  a b o u t h i s new r o l e .  two s t i l l  The  particularly  a l s o w i t h h e r s o r e arm  Mr. H. f e l t  responsible for  a l l o w i n g h e r t o r e s t b u t he d i d n o t want t o t r e a t h e r a s an invalid. had  T h i s r o l e was a d i f f i c u l t  done housework o r g a r d e n i n g  one f o r Mr. H. who  before.  t h a t h e r h u s b a n d was a g r e a t s u p p o r t doing  never  M r s . H. r e c o g n i z e d  t o h e r i n t h i s way by  some o f t h e work s h e "wanted t o g e t d o n e " . Nine p a t i e n t s p e r c e i v e d t h i s  them c l o s e r  together as a f a m i l y .  this  experience  Mrs.  H. s a i d  a l s o brought  experience  as b r i n g i n g  Three p a t i e n t s mentioned  them c l o s e r  to other  " I a l w a y s was t h e s t r o n g one p e o p l e  people. came t o me  84  for  help.  has  been a l e a r n i n g  closer  Everyone  a t c h u r c h was  e x p e r i e n c e f o r me  to people."  In response  more o r l e s s o f y o u r said  "about  said  "more" t h e i r  floored.  This experience  and has b r o u g h t  me  t o t h e q u e s t i o n "Do y o u s e e  f r i e n d s now?" t e n s a i d  t h e same" and t h r e e s a i d  "more" and t h r e e  "less".  f r i e n d s were i n i t i a t i n g  Of t h e t e n who  more o f t h e  c o n t a c t s and t h i s was a change. Mrs.  A. and M r s . J . b o t h  many f r i e n d s  I had."  less of their  Mrs.  Of t h e t h r e e p a t i e n t s who were s e e i n g  o f nausea.  I cannot  She s a i d  " I l o v e company  have p e o p l e o v e r . "  and  The two o t h e r  G. and M r s . I . , were s e e i n g l e s s p e o p l e b e c a u s e  were n o t w o r k i n g . all"  " I d i d n o t know how  f r i e n d s , M r s . M. c o u l d n o t have b i g d i n n e r  p a r t i e s because badly that  said  A l lsixteen  p a t i e n t s responded  t o t h e q u e s t i o n "Are you c o n c e r n e d  about  feel  patients, they  "not a t  any o f t h e s e  changes i n r e l a t i o n s h i p s ? " In  response  t o t h e q u e s t i o n "Do y o u f e e l  b e h a v i o u r has changed" a l l s i x t e e n Generally impression  that  diagnosis. identified did  they t o l d  everyone  about  their  "No".  cancer  q u e s t i o n i n g , s e v e r a l persons  as n o t b e i n g t o l d . their  p a t i e n t s responded  own  s p e a k i n g , a l l s i x t e e n p a t i e n t s had t h e  On s p e c i f i c  not t e l l  your  M r s . A., M r s . D.,  husbands' mothers because  old"  and t h e d i a g n o s i s w o u l d w o r r y  tell  her father  Mrs.  P. d i d n o t t e l l  them.  f o r t h e same r e a s o n . their  neighbours  were  and M r s . I .  t h e y were " t o o  M r s . A. d i d n o t  M r s . C., M r s . D., and who  t h e y d i d n o t know  too  well.  Mrs.  I. d i d not  her  teacher colleagues  tell  for fear  her  p r i n c i p a l or  of  some o f  jeopardizing  her  employability. All  fourteen  mothers t o l d  In response to the if  possible  their  i n order of  f a m i l i e s and  second c h o i c e  was  their  question  "List  importance"  and  t h o s e who  a l l 16  primary care-givers t h e i r doctor  children.  patients  first,  Mrs.  help  H.  15  you  listed  patients'  chose  her  clergyman. In  response to  who  h e l p s you  you  b e f o r e the  most now  helped before. noticed  them now 10.  is this  "No"  About  interview  1)  How  are  have c h a n g e d t o w a r d  say:  home?:  of  " m y s e l f " as Mrs.  E.,  and  the  Mrs.  the  three  person  F.,  and  primary care-givers  patient  who Mrs.  did  for  concern.  responses to questions  changes i n f e e l i n g s about  say  your f e e l i n g s about  any  f e e l i n g s of personal  Feelings  "Yes"  helped  Self  much w o u l d you  Somewhat:  person  same p e r s o n who  f a m i l i e s showed more  s c h e d u l e on  Unable to  "Regarding the  responded  Three p a t i e n t s ,  following  the  b)  13  a change i n t h i n g s  Feelings  a)  the  specifying  specifying that  The  question  diagnosis?"  widows r e s p o n d e d  H.,  the  of  the  self.  yourself  following:  attractiveness?  0  Not  6  A great  at a l l :  b e i n g competent w i t h i n 0  in  10  deal: " 0  and  outside  the  c)  Ability  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 ' and  e)  being  independent?:  income and  Other If  Somewhat: 1  able  living  Somewhat: 1 to maintain  t h e most?  2.  Of  0  (specify)?:  0  Next?  NA  a l l y o u r c o n c e r n s w h i c h we  Three p a t i e n t s s a i d help  level  conditions?:  =  help with  above  concerns  X  have m e n t i o n e d  i n t e r v i e w , what w o u l d most l i k e l y  3.  present  somewhat o r a g r e a t d e a l w h i c h o f t h e  you  "no  expectations  responsible?:  Feelings of being of  f)  t o be  help with  in  this  at this  time?  p r o s t h e s i s ; 13 p a t i e n t s  said  needed".  Would you No:  like  t o add  7  any  Clinic  f u r t h e r comments? very  helpful:  9  Comments I n answer t o t h e q u e s t i o n your  feelings  felt  their  somewhat. be  much w o u l d you  a b o u t y o u r s e l f have c h a n g e d ? "  f e e l i n g s of personal Mrs.  independent  "How  E. and  c h a n g e d somewhat.  also f e l t  her  fulfilling No  other  others'  expectations  changes i n f e e l i n g s  q u e s t i o n was  s e v e r a l people  changes i n f e e l i n g s  during  the course  of  the  interview.  changed  about a b i l i t y  were m e n t i o n e d when t h e reported  six patients  a t t r a c t i v e n e s s had feelings  about  C.  about  to  had  asked d i r e c t l y  Mrs.  say  self  but  self  commented  that  she g o t more u p s e t a b o u t as b u r s t i n g in  talking  always had  t e a r s over  about  had  now  into  an image o f h e r s e l f  herself  and  because  as she  had  Mrs.  says  E.  have m e n t i o n e d  In  in this  comments?", s e v e n commenting t h a t  t h e y were  said  the f i r s t  time  a doctor ever  of  concern  the  of  a n x i e t y may  embarrassed she  got a  a l l your  and  said  prosthesis.  concerns  E.,  "no"  you  and  Mrs.  shook my  K.  added  Mrs.  the  help.  have any  nine said  like  further  "yes",  Clinic's "this  was  hand."  of patient  and  family  interview schedule.  and Amount o f Change  i n t e r v i e w schedule's measure o f  o r change was  a s u b j e c t i v e account  particularly  i n t e r v i e w what w o u l d you  c o n c l u d e s an a c c o u n t t o the  with  the mastectomy  " v e r y happy w i t h t h e  o f them as p a t i e n t s . "  Although  felt  t o t h e q u e s t i o n "Do  Degree 6 f Concern  h e a l t h y which  t h e y d i d n o t need any  treatment  11.  she  help with the p r o s t h e s i s ,  said  patients  members' r e s p o n s e s  that  "uncomfortable"  since  she  such  I.,  t i m e ? " , t h r e e p a t i e n t s , Mrs.  patients  response  This  felt  Mrs.  a r e so i n q u i s i t i v e ,  said  L., m e n t i o n e d  thirteen  she  t o t h e q u e s t i o n "Of  h e l p w i t h most a t t h i s  other  as s t r o n g and  out to p l a y bingo u n t i l  response  and Mrs.  said  "people  Mrs.  she w o u l d n o t go  F.,  L.  the house.  a l s o mentioned  n o t gone t o c h u r c h  t h e young o n e s " .  w h i c h we  selling  h e r work r o l e ,  changed.  In  o t h e r t h i n g s than her h e a l t h ,  not r e l i a b l e ,  degree  the r e s e a r c h e r  feels  o f the r e s e a r c h e r ' s p e r c e p t i o n o f  be u s e f u l .  The  researcher f e l t  p a t i e n t s p e r c e i v e d more c h a n g e s and  that  were g e n e r a l l y  degree  eight more  88 anxious about t h e i r  situation  greater  i n d i c a t e d to the researcher  a n x i e t y was  f o l l o w i n g ways: about o t h e r D. s a i d "hated  things  that place"  and  three  their these  researcher.  h u s b a n d s o f M r s . E . , M r s . F., and M r s . I . ,  may  "highstrung"  and  and s a i d  The p r o f i l e s i n any way,  they  o f these  although  The r e s e a r c h e r  toward t h e v a l u e  of their  and s u r g e r y .  This  treatment  a l l e i g h t mentioned  speculates  breasts  dreams,  e i g h t p a t i e n t s do n o t  that  be a t t r i b u t e d t o t h e a t t i t u d e s o f t h e s e  diagnosis  "uptight"  were a n x i o u s a b o u t  i n either adjusting to loss of a breast  good h e a l t h .  Mrs.  to the C l i n i c .  M r s . K. and M r s . L . m e n t i o n e d h a v i n g  similar  tearful  p a t i e n t s m e n t i o n e d many c o n c e r n s t o t h e  effectiveness.  ficulty  and  a n x i o u s a b o u t t r e a t m e n t s and s a i d she  i n reference  waking i n the n i g h t  appear  This  i n the  she was more u p s e t  w i v e s were u n u s u a l l y three  patients.  r e c e n t l y and was on t r a n q u i l i z e r s .  she was v e r y  The said  M r s . C. s a i d  than the other  dif-  or loss of  this eight  anxiety patients  and good h e a l t h p r i o r t o  a s s o c i a t i o n has been m e n t i o n e d  82 i n the l i t e r a t u r e . the  value  idea  However, a s t h i s  of the breast  is still  to the p a t i e n t p r i o r  pure s p e c u l a t i o n .  were n a t u r a l l y more i n c l i n e d eight 12.  study  d i d not explore to surgery,  P o s s i b l y these  eight  patients  t o be a n x i o u s t h a n t h e o t h e r  patients. Other  Findings  A number  of other  f i n d i n g s were d i s c o v e r e d  this  during  89  the i n t e r v i e w s w h i c h were n o t connected t o s p e c i f i c q u e s t i o n s i n the Old The  schedule.  Depressions r e s e a r c h e r found t h a t i n t a l k i n g about the  mastectomy p a t i e n t s brought up sources o f d e p r e s s i o n s i n the p a s t . Mrs. P. t o l d the r e s e a r c h e r about the h e a r t a t t a c k o f her husband, t h e almond p o i s o n i n g o f her b r o t h e r and  the  sudden death o f 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 o t h e r l o s s e s and endings and was  just  another  t h i n g t o cope w i t h i n l i f e . R e c o g n i t i o n of M o r t a l i t y Mrs. M. Mrs. G.,  Mrs. K.,  (who had l i v e r m e t a s t a s i s ) and the widows and Mrs. P., wished t o 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 o f t h e m s e l v e s 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 e x p e r i e n c e .  The r e s e a r c h e r f e l t t h i s was  i n d i c a t i o n t h a t t h e s e l a d i e s were spending  an  some time l o o k i n g  back over t h e i r l i v e s and e x p e r i e n c i n g a sudden awareness of m o r t a l i t y and p a s t endings.  T h i s f i n d i n g may  also indicate  a c e r t a i n degree o f d e n i a l . B r e a s t Phantom and Loss Three p a t i e n t s , Mrs. to  E., Mrs.  F.,  and Mrs. L seemed  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 Mrs.  L.  researcher.  who  was  q u i t e heavy b r e a s t e d  e x p e r i e n c e d phantom l i m b Mrs.  L.  herself  sensations  s a i d she  had  on  returning  first  cried  and  heavy b r e a s t e d  breast  felt  loss.  were v e r y  wear a p r o s t h e s i s . this  specific  The  anxiety  bad"  E.  and  mentioned d i f f i c u l t y  i n creating a lopsided,  patients  "really  Mrs.  about  other  13  patients a  F.  also  other about  loss.  These  a b o u t how  about o b t a i n i n g  Mrs.  seems  feeling  sense of  concerned  she  breast.  with the  unbalanced  themselves, which i n d i c a t e d t h e i r three  missing  home f r o m h o s p i t a l , w h i c h  t o i n d i c a t e a deep s e n s e o f quite  i n her  mentioned  soon t h e y  d i d not  could  express  prosthesis.  Denial Denial  of  c h a n g e s and  e v i d e n c e most s t r o n g l y who  b o t h had  was  previously  strategy  Stage  mentioned,  to help  patients  A  Mrs.  her  B.  and  perceptions  Mrs.  Mrs.  to  synopsis  of  be  an  future  concerns a t the the  interviews  husband, f o l l o w t o  o f d e n i a l i n t h e s e two  and  in  Mrs.  B.,  "guarded" prognoses.  " d e n i a l " may adjust  A.  " g u a r d e d " p r o g n o s e s may  d e n i a l o f changes o r  interview.  cases,  II cancers with  T h e i r d i a g n o s e s and their  i n two  c o n c e r n s seemed t o be  effective  changes i n be  coping health.  connected  time of  w i t h Mrs.  illustrate  As  the  the A.  and  interviewer'  cases.  A.  Case S y n o p s i s ;  Mrs.  A.'s  main c o n c e r n was  that  to  treatment  will  d e l a y h o l i d a y s and s h e w i l l  14  y e a r o l d on a p r o m i s e d  no  change i n t h i s  trip  n o t be a b l e t o t a k e h e r  t o Disneyland.  family at a l l "  she s a y s .  "There i s  " I was o u t  digging  i n t h e g a r d e n t h e d a y I was o u t o f h o s p i t a l . "  husband  says  " t h e r e i s no change so why b o t h e r  interviewed."  M r s . A. l a t e r  feeling  to her family.  closer  a great d e a l of concern."  said  My  t o be  s h e n o t i c e s a change i n  She s a i d ,  M r s . A. s a i d  "The c h i l d r e n "the c h i l d r e n  showed attempt  t o pamper me b u t gave up b e c a u s e I w o u l d n o t s i t s t i l l . " later  said  after  the scheduled  21 y e a r o l d d a u g h t e r and  shopping.  not  realize  was h e l p i n g w i t h  feels  a slight  some c l e a n i n g , c o o k i n g  I had."  She adds "I'm v e r y  now, t h e m u s c l e s h u r t i n my arm b u t i t ' s j u s t  "just  "I d i d  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  no o t h e r c h a n g e s i n s e l f .  time."  that her  M r s . A. s e e s more o f h e r f r i e n d s now:  how many c l o s e f r i e n d s  She but  i n t e r v i e w was o v e r  She  healthy  a matter o f  M r s . A. a d d e d s h e d o e s n o t g e t down b e c a u s e s h e g e t s up and d o e s s o m e t h i n g . "  cancer with  a guarded p r o g n o s i s .  M r s . A. h a s a S t a g e I I I n t e r v i e w e r had i m p r e s s i o n  d e n i a l was a l l o w i n g h e r t o r e m a i n c h e e r f u l  and c a r r y on as-  if  s h e was aware  e v e r y t h i n g were b a c k t o n o r m a l a l t h o u g h  she w o u l d be h a v i n g  treatments  f o r one y e a r .  Also, interviewer  felt  h u s b a n d must b e u n d e r some s t r e s s b e c a u s e he o r i g i n a l l y  said  he w o u l d l i k e  mind. at this  t o be i n t e r v i e w e d and t h e n  The r e s e a r c h e r had t h e i m p r e s s i o n time  he was n o t i n v o l v e d  i n h i s w i f e ' s r e c o v e r y , which  want t o h a n d l e  herself.  changed h i s  she a p p e a r e d  to  Mrs.  B.  Case S y n o p s i s : concern?"  Mrs.  was:  husband d i d the  but  after  calls  t h a t she  the  fact  often."  later,  A.  can  Mr.  first  B.'s  feeling." of  hospital  B.  impressed  changes e x c e p t  a similar  main c o n c e r n  will  be  like  c a r e o f by  B.  "her also  approach to B.  son  took  a  denial place  i s his wife's health,  successful. up  a time  though.  She's n o t  I n t e r v i e w e r had  claim He  hope t h a t  (cobalt)!"  far  B.  say  Mr.  pain at a l l ,  my  As  - I do more o f t h e  i n any  and  know."  responsibilities,  shopping  nothing  "they  a i r you  t h i s bomb s h e l l and  says  bomb - I j u s t  and  whatsoever - f e e l s  He  i n the  p r e t t y much as b e f o r e  dishe  no  pain  really."  i m p r e s s i o n h u s b a n d was  i n patient's recovery, and  Mrs.  i m p r e s s i o n Mrs.  c a r r y on  feelings  week o u t  as n o r m a l .  "we  B.'s  no  main  mastectomy.  as c h a n g e s i n f a m i l y r o l e s  involved  sense,  i n t e r v i e w w i t h Mrs.  fix i t - it's still  i s taken  "What i s y o u r  Interview:  a d d s : " T h i s h i t us wife  the  weeks a f t e r  whether treatment they  on  p a t i e n t , took  Care-Giver  Synopsis:  her  t h a t t h e r e were no  although  seven  Primary  cooking carried  to  t h i n g - no  I n t e r v i e w e r had  Stage II cancer as M r s .  response  "not a darn  Her  upon me  B.'s  actively  seemed t o p u t words t o  r e c o g n i z e d her d e n i a l o f changes a t  Mrs. this  time. The  N e x t S t a g e - 10 Months a f t e r Mrs.  0.  had  the  h e r mastectomy  Mastectomy  i n August  1977  and  was  93 returning  to the C l i n i c  recurrent disease. waiting  fat  tests.  Therefore,  f o r c a u s a l i t y i n order to  and t h u s r e m a i n h e a l t h y .  Mrs.  few months t h a t i t was t h e b a c o n t h a t caused her  changes i n h e r l i f e  a d e c i s i o n to modify her d i e t  home i n t h e M a r i t i m e s ,  she was  M r s . O.'s m a j o r  and many c h a n g e s i n r e s i d e n c e  cancer.  involved  and d i e t  i n the l a s t  i n her d i e t  breast  from these  around a search  change h e r l i f e s t y l e 0. had d e c i d e d  tests for possible  A t the time o f i n t e r v i e w ,  f o r the results  concerns focussed  f o r follow-up  where t h e l i f e  currently  and move b a c k t o h e r was f a m i l i a r  and l e s s  stressful. 13.  The I n d e p e n d e n t V a r i a b l e s Which Seemed t o I n f l u e n c e Perceptions previously  III  posed  and  i n the problem  The  treatment plan  The  seriousness  proposed  formulation. and t i m e o f i n t e r v i e w  o f the d i a g n o s i s , e i t h e r Stage I ,  o r I V , d i d n o t seem t o i n f l u e n c e p e r c e p t i o n s  economic change. with  o f S o c i o e c o n o m i c Change and C o n c e r n s , as  However, t h e p a t i e n t s ' c u r r e n t  t r e a t m e n t d i d seem t o i n f l u e n c e p e r c e p t i o n degree o f The  treatments  II,  of socioexperience o f change  concern.  ten patients interviewed  before  seemed t o be t h e most a n x i o u s ,  their radiation  t o have t h e most  s o c i o e c o n o m i c c o n c e r n s and t o 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 o f t r e a t m e n t .  and  M r s . F., S t a g e I, h a d s o c i o e c o n o m i c c o n c e r n s and a l s o  mentioned problems with  M r s . K., S t a g e I I I , and  sleeping.  Mrs. E.,  The f o u r p a t i e n t s , i . e .  Mrs.  I . , M r s . L . , M r s . M.,  treatments awaiting  and M r s . N., i n t e r v i e w e d d u r i n g  seemed t o be g e n e r a l l y  treatment.  M r s . N. s a i d  less  anxious than  "you j u s t  patients  t a k e e a c h day  at a time."  The two p a t i e n t s , M r s . G. and M r s . J . , i n t e r -  viewed  tests  after  and/or  about m e d i c a l concerns range return go  future.  and were t h i n k i n g more  M r s . G. was w o n d e r i n g  t o work.  Mrs. J . s a i d  through a l l t h i s  normal  t r e a t m e n t , seemed t h e l e a s t  activities  the long  when and i f she s h o u l d  " I j u s t hope I do n o t have t o  again', , and was p l a n n i n g t o r e t u r n t o 1  a t h e r own  speed.  Therefore the respondents  perceptions of current  socioeconomic  influenced  i n t e r v i e w e d i n terms  by t h e t i m e  Previous Experience with In r e s p o n s e  about  anxious  concerns  seem t o be  of treatment.  Cancer  t o t h e q u e s t i o n "Have y o u o r any  family  member had any p r e v i o u s e x p e r i e n c e w i t h c a n c e r as an illness?", mothers,  12 p a t i e n t s  t h i s may  than ever."  Three  affect  M r s . P.'s m o t h e r d i e d  t h i s e x p e r i e n c e may  father-in-law died affect  by  These  two p a t i e n t s t o o k more o f an  stance about  their  illness  and t h e i r  t h a n M r s . E . o r M r s . K., who  experience with cancer.  cancer  " I am f i n e ,  not worry."  situation  patients  "going stronger  of l i v e r  her a t t i t u d e  treatment  two  of breast cancer,  her perception of h e r s e l f  M r s . M.'s  fathers,  f o u r a u n t s and u n c l e s ,  and one nephew were m e n t i o n e d  as h a v i n g c a n c e r .  and  "Yes".  f o u r b r o t h e r s and s i s t e r s ,  two g r a n d m o t h e r s  and  responded  do  optimistic socioeconomic  had no p r e v i o u s  Previous  Illnesses  Women who h a d no p r e v i o u s i l l n e s s  or serious  o p e r a t i o n s b e f o r e seemed t o be more u n c o m f o r t a b l e w i t h t h e sick role,  and w i t h h a v i n g c a n c e r .  more s o c i o e c o n o m i c c o n c e r n s .  They a l s o p e r c e i v e d  Therefore perceptions of  s o c i o e c o n o m i c change seem t o be i n f l u e n c e d experience with  illness.  Three p a t i e n t s responded  "Yes"  t o t h e q u e s t i o n "Have  y o u e x p e r i e n c e d any p r e v i o u s i l l n e s s e s ? " experienced and M r s .  a h e r n i a and g l a u c o m a , M r s .  P., a t h y r o i d e c t o m y .  a d j u s t more e a s i l y about had  their  still  said  a shock The  P.  t o the sick role  socioeconomic  situation  " I have a l w a y s this  sick  roles  Situation  seemed t o anxious  M r s . H., who h a d n e v e r  b e e n t h e s t r o n g one.  It is  t o me." J . , Mrs.  a n d a d a p t more e a s i l y  M. a n d M r s .  to the patients'  their  a l o n e seemed t o show t h e  socioeconomic  c o n c e r n s were f u t u r e o r i e n t e d . f u t u r e h o u s i n g , Mrs.  ill.  a n d Age  t h r e e widows who l i v e d  most c o n c e r n a b o u t  and M r s .  womb,  t h a n Mr. H. who h a d n e v e r known h i s w i f e t o be  Living The  J . , a collapsed  t h a n t h e 13 p a t i e n t s who  c a n n o t be h a p p e n i n g  adjust  had  a n d t o be l e s s  p r i m a r y c a r e - g i v e r s o f Mrs.  seemed t o a l s o  M r s . M.  These p a t i e n t s  not experienced previous i l l n e s s .  been i l l ,  by p r e v i o u s  situation.  M r s . K.'s c o n c e r n s  G.'s c o n c e r n s w i t h p o t e n t i a l  P.'s c o n c e r n s w i t h f i n d i n g  s i n c e h e r husband's d e a t h .  something  Their lay with employability  to f i l l  A l l t h r e e widows e x p r e s s e d  her l i f e some  f e a r s about who  imposing  did not live  dependent.  t o o l o n g on t h e i r  primary  care-givers,  w i t h them, b u t on whom t h e y were t e m p o r a r i l y  This  anxiety created  s t r e s s on t h e i r  relationships  w i t h p r i m a r y c a r e - g i v e r s and added a n x i e t y t o t h e i r economic  situation. Mrs.  I., themarried school teacher i n her t h i r t i e s  without c h i l d r e n ,  had a unique  her f u t u r e e m p l o y a b i l i t y The living about  socio-  socioeconomic  and l i f e  women i n t h e i r  socioeconomic  were e m p l o y e d , even  40's and 50's and e a r l y  60's,  seemed somewhat  situation,  though  anxious  particularly  i f they  t h e y were aware o f t h e i r  support.  T h e c a n c e r d i a g n o s i s seems t o have b r o u g h t  age  a sudden a w a r e n e s s o f m o r t a l i t y  in  group  employability,  lifestyle  life  expectancy,  families' to this  and p o s s i b l e  change  s e x u a l a t t r a c t i v e n e s s and  w i t h 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 o r 70's l i v i n g retired  about  expectancy.  w i t h husbands and c h i l d r e n their  concern  quiet  lifestyle  w i t h husbands i n a  adjusted with the least  socioeconomic  change o r c o n c e r n t o t h e d i a g n o s i s and t r e a t m e n t o f b r e a s t cancer.  As Mrs.  these things." before."  M. s a i d  " a t o u r age (79) y o u b e g i n t o a c c e p t  Mr. B. s a i d  Patients  i nthis  " t h i n g s go o n p r e t t y much a s age g r o u p  some a c c e p t a n c e o f m o r t a l i t y . more a r o u n d  feelings  appearance,  and s o c i a l  seem a l r e a d y t o have  Patients'  concerns centred,  of personal attractiveness, concerns  about  them o r o t h e r s w o r r y i n g t o o much.  people  their  looking at  Services The did  not  she  services received  seem t o  of patients  Received P r i o r to  influence  toward the  "hates the  psychological  place",  the  Clinic she  or  Interview  not  received  by  patients  universally positive attitude staff.  explained  r e a c t i o n to going there  A l t h o u g h Mrs. i t was for  not  the  treatment.  D.  said  people,  98 Chapter V SUMMARY AND  1.  Summary The  the  RECOMMENDATIONS  purpose of t h i s  needs o f b r e a s t  arise  was t o i d e n t i f y  p a t i e n t s and t h e i r  some o f  f a m i l i e s which  f r o m s o c i o e c o n o m i c change and c h a n g e s i n r o l e s and  relationships patients nature  cancer  study  after  t h e mastectomy.  i s relatively  of this  study  allows  As r e s e a r c h w i t h  new a t t h e C l i n i c ,  cancer  the exploratory  was s t r e s s e d i n t h e p r o b l e m  The  design  for  s e r v i c e by t h e r e s p o n d e n t s t h e m s e l v e s and t h r o u g h t h e  researcher's  f o r n e e d s t o be i d e n t i f i e d  formulation.  perceptions  o f needs from p e r s o n a l  a b o u t s o c i o e c o n o m i c c h a n g e s and c o n c e r n s . o f t h e needs o f b r e a s t planning cancer  p a t i e n t s and t h e i r  The new b r e a s t and  their  allow  cancer  and i m p l e m e n t a t i o n  a t t h e A. M a x w e l l E v a n s  This  patients w i l l  o f support  exploration  improve t h e  f a m i l i e s b y t h e p r o f e s s i o n a l team  study  was r e s t r i c t e d  to considering  p a t i e n t s r e f e r r e d to the C l i n i c  primary c a r e - g i v e r s .  i n May, 1978  The sample was s t r a t i f i e d t o  i n t h e sample had r e c e i v e d a c a n c e r  One o f t h e s e  interviews  services to breast  f o r r e p r e s e n t a t i o n o f the four stages  patients  requests  Clinic.  scope o f t h i s cancer  through  p a t i e n t s was e x p e r i e n c i n g  o f cancer. diagnosis  Two before.  recurrent disease.  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  diagnosis  and t r e a t m e n t o f c a n c e r .  their  first  The  99 The f o c u s of the study was the p e r c e p t i o n o f the p a t i e n t and the p r i m a r y c a r e - g i v e r s o f 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 f e e l i n g s about s e l f .  their  The i n t e r v i e w s c h e d u l e g a t h e r e d  demographic and m e d i c a l i n f o r m a t i o n , p e r c e p t i o n s o f d i a g n o s i s and t r e a t m e n t , p e r c e p t i o n s o f changes i n p l a c e of r e s i d e n c e , 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 and f e e l i n g s about s e l f .  The main source o f d a t a was  friends the  i n t e r v i e w s c h e d u l e and i n f o r m a t i o n g a t h e r e d by the d i r e c t o r o f 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 patients  and p r i m a r y 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 t h e r e s e a r c h e r and had a v a r i e t y o f q u e s t i o n s t o ask o f the researcher.  The r e s p o n d e n t s ' l e v e l o f i n v o l v e m e n t seemed t o  improve toward the end o f the i n t e r v i e w i f the r e s e a r c h e r took time t o d i s c u s s what was o f p r e s s i n g i n t e r e s t o r concern t o t h e respondent r e g a r d l e s s o f the i n t e r v i e w s c h e d u l e .  The  f i n d i n g s from responses t o 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 p r i m a r y c a r e - g i v e r s p e r c e i v e some changes i n socioeconomic s i t u a t i o n and/or r o l e s and  relation-  s h i p s , but t h e s e changes were p e r c e i v e d t o be minor and of o n l y a moderate degree o f c o n c e r n .  F a m i l y members and  p a t i e n t s agreed on the number o f 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 s a i d he o r she was As mentioned  "very concerned" about t h e s e  respondent changes.  i n t h e l i t e r a t u r e r e v i e w , b r e a s t cancer p a t i e n t s  100 often  use  d e n i a l as  a coping  first  month a f t e r t h e  strategy  particularly  in  the  study,  was  8 3  Therefore, given  d e n i a l , as  consideration  t h i s design  mastectomy.  does not  the  eight  patients  others  as  o f f e r a way  researcher  The  to  breast  may  be  their  that  l o s s of  researcher  findings.  The  However,  degree  researcher  degree of  being  anxiety  generally  than  sleeping, upset.  although these patients  did  they a l l i n d i c a t e d a d i f f i c u l t y a breast  or  to  l o s s o f good value  of  of  reports  comments a b o u t n o t  t r a n q u i l i z e r s and  recognized  findings.  t o measure t h e  showed a g r e a t e r  have s i m i l a r p r o f i l e s adjusting  the  i n d i c a t e d by  dreaming, t a k i n g  for this  i n i n t e r p r e t i n g the  i n f l u e n c e o f d e n i a l on that  defined  The  not in  health.  speculates  whether the  the  lost  associated  w i t h post-mastectomy a n x i e t y .  This  84  association All practical  i s mentioned  i n the  patients  primary care-givers  s e r v i c e s were r e c i e v i n g them and  were n e e d e d .  A  few  patients  needs f o r e m o t i o n a l very  pleased  a t the 2.  The of  A.  and  literature.  support  w i t h the  the  and  needed  a t the  time  primary care-givers  services.  treatment  Maxwell Evans  Suitability  and  who  A l l patients  they received  they  mentioned were  from the  staff  Clinic. Limitations  Instrument  The c o n c e r n s and  interview  schedule's  c h a n g e s i n r o l e s and  p a t i e n t n e e d s was  successful  focus  on  socioeconomic  r e l a t i o n s h i p s to  for three  identify  reasons. F i r s t l y ,  as  101 b r e a s t c a n c e r 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 , their  thoughts  rehabilitation  are u s u a l l y and  a future daily  Therefore, discussing changes i n r o l e s seemed t o be was  f o c u s s e d towards  and  concerns  life  about  relationships  relevant  to t h e i r  rapid  without  disability.  socioeconomic  and  feelings  needs.  changes,  about  Secondly,  self  this  focus  a l s o n o n - t h r e a t e n i n g f o r b r e a s t c a n c e r p a t i e n t s who  not wish  to discuss their  mastectomy. adjustment, change and social  psychological  I f p a t i e n t s wished  to t a l k  t h e y d i d so v o l u n t a r i l y . family roles  and  s e r v i c e department's  work s t u d y , t h i s  about  relationships mandate.  work p e r s p e c t i v e a t t h e C l i n i c . this  to  their  Thirdly,  research i d e n t i f i e d  s e r v i c e s recommended f r o m  adjustment  emotional  socioeconomic  i s relevant  to  T h e r e f o r e , as a needs from  I n t h i s way, study w i l l  base from which t o c o n s i d e r p r a c t i c a l  may  the  the  social  social  needs  and  have a r e c o g n i z a b l e  applications  of  the  findings. However, t h e s t r u c t u r e d limitations to  t h e two  in this  i n t e r v i e w s c h e d u l e had  e x p l o r a t o r y study.  s c a l e s which measured degree  Firstly,  the  of concern  amount o f change a c r o s s t h e a r e a s o f s o c i o e c o n o m i c resulted  in little  were n o t  suitable  respondents.  variability. f o r the time  Possibly and  the  situation  responses  and change  scalar of  two  measures  these  Some r e c o g n i z e d s c a l a r m e a s u r e s o f a n x i e t y  as t h e S p i e l b e r g e r A n x i e t y S c a l e , w o u l d have b e e n u s e f u l complement o p e n - e n d e d q u e s t i o n s on d e g r e e  of  concern.  such to  102 S e c o n d l y , a more l o o s e l y s t r u c t u r e d the  essential  1.  focussed  same t o p i c s , w o u l d have l e n t more e a s i l y  conversational  3.  schedule  interview  for this  kind  s t y l e which the of e x p l o r a t o r y  to  on  the  researcher  found  study.  Conclusions The  majority  their  of p a t i e n t s  f a m i l i e s were  The  researcher  and  see  the  stability  and  primary care-givers  " c l o s e r " as  concludes that  of t h i s  f a m i l i e s may  need t o s t r e n g t h e n  through the  a result  felt  to maintain  experience.  often an  strengthen  unchanging  s t r e s s of a cancer diagnosis  and  treatment. 2.  Denial  i s often  a noticeable  primary care-givers 3.  to handle  this  for patients  stressful  and  experience.  Widows seem t o have t h e most s o c i o e c o n o m i c c o n c e r n s experience also on  the  most a n x i e t y  fear that  their  did  not  f u t u r e n e e d s may  i n d i c a t e to the imposed upon.  s i n g l e p e r s o n s and p a t i e n t s who A l l 11  about change.  primary care-givers.  they f e l t  4.  strategy  eventually The  primary  researcher The  or  l i v e with  their  primary felt  the  c h a n g e . One  impositions  patient  concludes  researcher  t o be  that  that  from  care-givers.  responsible  and  concerned  T h e s e h u s b a n d s were  i n a temporary r o l e - r e v e r s a l i n the  8 seemed t o  patients  care-givers  to the  researcher  about t h e i r wives' r e h a b i l i t a t i o n .  this  be  widows have u n i q u e c o n c e r n s  husbands i n t e r v i e w e d  involved  These  and  home  somewhat u n e a s y  husband asked r e s e a r c h e r  i f what  and with they  103 were d o i n g was enough o r s h o u l d husband  t h e y do more.  Another  s a i d i t w o u l d be h e l p f u l t o t a l k t o o t h e r  primary care-givers  i n t h e same s i t u a t i o n .  The  concludes that  t h e husband as p r i m a r y c a r e - g i v e r  t o be i n v o l v e d  i n helping  that All  some a r e u n c e r t a i n patients  operation  seemed  and t h e n w a i t i n g  two most s t r e s s f u l  not  seem  i n recovery  and  way t o do  this.  forClinic  cancer  t h e Mastectomy V o l u n t e e r s  The r e s e a r c h e r i s a problem  Patients mentioning going  treatments  Most p a t i e n t s  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  treatment"  concludes that  f o r some c a n c e r  the value  patients  concludes that patients  i f patients  patients.  h e l p f u l . The finding  patients  patients  i n the transportation  are already  can  "waiting  of t a l k i n g to other  o r a t t h e h o s p i t a l and f o u n d t h i s  do  as p o s t - s u r g i c a l  t h r o u g h t h e same e x p e r i e n c e were u s u a l l y  who had met o t h e r  wants  f o r t h e mastectomy  time p e r i o d s .  t o be aware t h a t  rehabilitation. for  about t h e b e s t  to find waiting  the  help  the p a t i e n t  researcher  service researcher  other  t o t a l k a b o u t c o n c e r n s , a n e e d h a s been  identified.  Recommendations Future research  n e e d s t o be c o n d u c t e d t o e x p l o r e t h e  u n i q u e c o n c e r n s o f t h e widow and s i n g l e p e r s o n  i n the  face  also  of a cancer diagnosis.  involve  This  study  should  t h e s t r e s s on t h e r e l a t i o n s h i p between t h e s i n g l e  p e r s o n and p r i m a r y More r e s e a r c h  care-giver.  n e e d s t o be done t o i n v e s t i g a t e t h e r o l e  104  3.  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  to adjust  rehabilitation.  to d i a g n o s i s , treatment  More r e s e a r c h of  the v a l u e  i s needed of  the  rehabilitation 4.  A  study  types  and  and  to i n v e s t i g a t e the  lost breast relief  on  the  of cancer  activities family)  with  and  the  focus  t o have i n o r d e r  after  surgery.  p a t i e n t s of  "What a r e  a t t i t u d e s f o r the  influence  patient's  from a n x i e t y  o f p r i m a r y c a r e - g i v e r s and  patients  the  different  best  primary care-giver  to help  the  (and  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  department to p a t i e n t s w a i t i n g s t a r t would a l l e v i a t e telephone  call  seem t o o c c u r 6.  The if  she  be  responsible  beginning  in  and  anxiety.  they  are  f o r surgery  for informing  group i d e a l l y  treatment a t the  c o n c e r n s and  This which  r e s t i n g a t home.  w o u l d be  reassured  sponsored  surgeon's nurse  could  patients.  f o r a l l new Clinic focus  questions  breast  patients  w o u l d have an  educational  f o r p a t i e n t s who  wished  about changes i n  family  r e l a t i o n s h i p s , s o c i o e c o n o m i c c h a n g e , and  h e a l t h and  to  r o u t i n e l y about the p r e - s u r g i c a l  than a t h e r a p e u t i c  share  treatments  t o answer q u e s t i o n s  C a n a d i a n C a n c e r S o c i e t y . The  A voluntary  roles  i s waiting  work  s e r v i c e o f t h e mastectomy v o l u n t e e r s  the  to  general  a l s o serve  were i n f o r m e d  by  rather  for their  to p a t i e n t s while  p a t i e n t who  counselling  7.  may  their  social  f e e l i n g s about s e l f w i t h  other  changes  patients in  105 the  same s i t u a t i o n .  As a l l p a t i e n t s m e n t i o n e d  some  c h a n g e s i n r o l e s and r e l a t i o n s h i p s , t h e r e s e a r c h e r that  a need has been i d e n t i f i e d .  The m a s t e c t o m y  feels creates  85 feelings  o f l o s s and a n x i e t y  group would h e l p part of their daily  patients  natural  i n many p a t i e n t s .  to accept  these  f e e l i n g s as  a d j u s t m e n t and r e t u r n  t o normal  acitivities.  T h e s e n e e d s f o r s u p p o r t a r e now o f t e n family's to help If help  The  left  to the  r e s p o n s i b i l i t y who may n o t know how o r be a l l o w e d by t h e p a t i e n t .  t h e g r o u p were l e d by a s o c i a l  worker, t h i s  may  t o b r o a d e n t h e r o l e o f t h e s o c i a l w o r k e r t o someone  who d e a l s  with education  as w e l l  as f a m i l y  and s o c i o e c o n o m i c  problems. A  support group f o r b r e a s t  serve  to identify  needs f o r e x t r a  w h i c h w o u l d n o t be i d e n t i f i e d p r o b l e m s on t h e a d m i s s i o n 8.  c a n c e r p a t i e n t s would counselling  through  breast in  involve  forms o f l o c a l  patients. project to  a l l primary care-givers of  patients, particularly  an e d u c a t i o n a l  role  ideally  h u s b a n d s , and p a t i e n t s  program about the p r i m a r y  and how one c a n b e s t  and h e l p  socioeconomic  A l o n g - r a n g e d e m o n s t r a t i o n and r e s e a r c h voluntarily  help  the breast  w i t h h e r unique needs f o r r e h a b i l i t a t i o n .  care-giver's  cancer Some  patient educational  a d v e r t i s i n g w o u l d p r o b a b l y be n e c e s s a r y t o e n c o u r a g e bands t o p a r t i c i p a t e .  also  hus-  106 FOOTNOTES 1.  K a t h e r i n e E l i z a b e t h H u l b u r t , " L i f e Change Events as They R e l a t e t o the Onset o f B r e a s t 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 R e l a t e d t o Cancer o f the B r e a s t , B r i t i s h J o u r n a l o f C a n c e r , 25 (December 1971): 721-734.  3.  Thomas P. H a c k e t t , e t a l . , " P a t i e n t Delay i n C a n c e r " , New England J o u r n a l o f M e d i c i n e , 289 ( J u l y 1973): 14-20.  4.  Seymour F i s h e r , " M o t i v a t i o n f o r P a t i e n t D e l a y " , A r c h i v e s of G e n e r a l P s y c h i a t r y , 16 (June 1967): 676-678.  5.  Morton Bard and A r t h u r S u t h e r l a n d , " P s y c h o l o g i c a l Impact and I t s Treatment", P a r t IV: A d a p t a t i o n t o R a d i c a l Mastectomy, Cancer 8 ( J u l y - A u g u s t 1955) : 656-657.  6.  Ibid.  7.  Darlene P i n s c h k e , S r . , "Guardedness o f Openness on the Cancer U n i t " , N u r s i n g R e s e a r c h , 2 2 (November-December 1973): 484-489.  8.  A u r o r a P. M a m a r i l , " P r e v e n t i n g C o m p l i c a t i o n s A f t e r R a d i c a l Mastectomy", American J o u r n a l of N u r s i n g , (November 1974): 2000-2003.  9.  G l o r i a M. F r a n c i s , "Cancer: The E m o t i o n a l Component", American J o u r n a l o f N u r s i n g , 69 (August 1969) : 1677-1681.  10. B e v e r l y V o l i c e r , " P a t i e n t s 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 A s s o c i a t e d w i t h H o s p i t a l i z a t i o n " , N u r s i n g R e s e a r c h , 23 (May-June 1974): 235-238. 11. Bard and S u t h e r l a n d , p. 12. I b i d . ,  p.  661  13. I b i d . ,  p.  662  14. I b i d . , pp.  660.  662-663  15. M.M. Roberts e t a l . , "The M o r b i d i t y o f Mastectomy", B r i t i s h J o u r n a l of S u r g e r y , 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 A d j u s t m e n t t o Mastectomy", M e d i c a l A s p e c t s o f Human S e x u a l i t y , ( F e b r u a r y 1 9 7 3 ) : 42-65.  7  17.  John E. Healey, "Role o f R e h a b i l i t a t i v e M e d i c i n e i n the Care o f the P a t i e n t w i t h B r e a s t C a n c e r " , Cancer 8 (December 1 9 7 1 ) : 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 o f t h e Female B r e a s t F o l l o w i n g R a d i c a l M a s t e c t o m y " , P l a s t i c and R e c o n s t r u c t i v e S u r g e r y 47 ( 1 9 7 1 ) : 565-567.  19.  A.C. A k e h u r s t , " P o s t Mastectomy 181-182.  20.  R o b e r t a K l e i n , "A C r i s i s 1 9 7 1 ) : 1660-1665.  21.  H a r r y S. G o l d s m i t h and E d g a r d o S. A l d a y , " R o l e o f t h e Surgeon i n t h e R e h a b i l i t a t i o n o f the B r e a s t Cancer P a t i e n t " , C a n c e r 28 (December 1 9 7 1 ) : 1672-1675  22.  Klein,  23.  A r t h u r Peck, " E m o t i o n a l R e a c t i o n s t o Having C a n c e r " , CA 22 ( S e p t e m b e r - O c t o b e r 1 9 7 2 ) : 284-291.  24.  J a n e t 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 M a s t e c t o m y on a Woman's F e m i n i n e S e l f - C o n c e p t " , The J o u r n a l o f N e r v o u s and M e n t a l D i s e a s e 164 ( F e b r u a r y 1 9 7 7 ) : 77-87.  25.  Klein,  26.  R i c h a r d R e n n e k e r and Max C u t l e r , " P s y c h o l o g i c a l o f A d j u s t m e n t t o C a n c e r o f t h e B r e a s t " , JAMA 14 1 9 5 2 ) : 106-123.  27.  B e r n a r d S c h o e n b e r t and A r t h u r C. C a r r , " L o s s o f E x t e r n a l O r g a n s : Limb A m p u t a t i o n , Mastectomy and D i s f i g u r a t i o n " , i n L o s s 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 , e d . S c h o e n b e r g e t a l (New Y o r k : C o l u m b i a U n i v e r s i t y P r e s s , 1 9 7 0 ) , pp. 119-131.  28.  H e a l e y , p.  29.  S i d n e y 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 N e u r o p s y c h o l o g i a 8 ( 1 9 7 0 ) : 185-197.  30.  J o h n H. J a r v i s , " P o s t M a s t e c t o m y B r e a s t Phantoms", The J o u r n a l o f N e r v o u s and M e n t a l D i s e a s e 144 ( 1 9 6 7 ) : 266-272.  p.  p.  Morale", Lancet 2  t o Grow On",  Cancer  28  (1972):  (December  1661.  1662. Problems (March  1670. Amputation",  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 M a s t e c t o m y , " C a n c e r 28 ( 1 9 7 1 ) : 956-961.  32.  W i l l i a m M. M a r k e l , "The A m e r i c a n C a n c e r S o c i e t y ' s Program f o r t h e R e h a b i l i t a t i o n o f t h e B r e a s t C a n c e r P a t i e n t , " C a n c e r 28 (December 1 9 7 1 ) : 1676-1678.  33.  K l e i n , p.  34.  Ervin,  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 O r b a c h , " P s y c h o l o g i c a l Impact o f C a n c e r and C a n c e r S u r g e r y , I I : D e p r e s s i v e Reactions A s s o c i a t e d with Surgery f o r Cancer," Cancer 6 (September 1 9 5 3 ) : 958-962.  36.  Norma J e a n L o n g , "The I n i t i a l E f f e c t o f L o s s o f Body P a r t o n S e l f - E s t e e m i n Women H o s p i t a l i z e d f o r B r e a s t B i o p s y 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 1 9 7 5 ) : 1147-1148.  37.  P o l i v y , p . 77.  38.  A v e r y D. Weisman, "The E x i s t e n t i a l P l i g h t i n C a n c e r : S i g n i f i c a n c e o f t h e 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 M e d i c i n e 7 (1976-1977): 1-15.  39.  Kay R. J a m i s o n , D a v i d K. W e l l i s c h , a n d R o b e r t P a s n a u , " P s y c h o s o c i a l A s p e c t s o f M a s t e c t o m y , I : The Woman's P e r s p e c t i v e , " A m e r i c a n J o u r n a l o f P s y c h i a t r y 135 ( A p r i l 1 9 7 8 ) : 432-436.  40.  D a v i d K. W e l l i s c h , Kay R. J a m i s o n , and R o b e r t P a s n a u , " P s y c h o s o c i a l A s p e c t s o f M a s t e c t o m y , I I : The Man's P e r s p e c t i v e , " A m e r i c a n J o u r n a l o f P s y c h i a t r y 135 (May 1 9 7 8 ) : 543-546.  41.  J a m i s o n e t a l , p . 432.  42.  Ibid.  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 S e x u a l A d a p t a t i o n t o M a s t e c t o m y , " JOGN N u r s i n g (May-June 1 9 7 5 ) : 33-37.  45.  N e t t a W. G r a n d s t a f f , "The Impact o f B r e a s t C a n c e r on t h e F a m i l y , " i n B r e a s t C a n c e r v o l . 2, e d . J.M. V a e t h ( B a s e l : K a r g e r , 1 9 7 6 ) , p p . 146-156.  46.  S c h o e n b e r t , p . 120.  1662.  p . 42.  109  47.  Klein,  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," N u r s i n g T i m e s 66 ( 1 9 7 0 ) : 882-883.  49.  C a r l H. F e l l n e r , " F a m i l y D i s r u p t i o n A f t e r C a n c e r C a r e , " A m e r i c a n F a m i l y P h y s i c i a n 8 ( O c t o b e r 1 9 7 3 ) : 169-172.  50.  Klein,  51.  O l i v e r Cope, "Has Time Come F o r L e s s M u t i l a t i n g P s y c h i a t r y i n M e d i c i n e 2 ( 1 9 7 1 ) : 263-269.  52.  C . J . Margarey, "Treatment o f A p p a r e n t l y E a r l y B r e a s t C a n c e r : The Dilemma," M e d i c a l J o u r n a l o f A u s t r a l i a (September 1 9 7 2 ) : 543-547.  53.  Cope, p . 269.  54.  Klein,  55.  J . Herbert D i e t z , " R e h a b i l i t a t i o n o f the Cancer Med C l i n N o r t h Am 53 ( 1 9 6 9 ) : 615.  56.  M. B r o o k s h i r e , "Reach t o R e c o v e r y , " 67 ( J a n u a r y 1 9 7 4 ) : 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 , " C a n c e r P a t i e n t s H e l p E a c h O t h e r , " A m e r i c a n J o u r n a l o f N u r s i n g 74 ( A p r i l 1 9 7 4 ) : 650-651.  58.  " T a l k i n g Together," American 1972) : 682 .  59.  J . H e r b e r t D i e t z , "Commentary on ' P s y c h o l o g i c a d j u s t m e n t t o M a s t e c t o m y ' , " M e d i c a l A s p e c t s o f Human S e x u a l i t y 7 ( 1 9 7 3 ) : 65.  60.  D.R. M i l l a r d e t a l , " B r e a s t R e c o n s t r u c t i o n A P l e a F o r Saving t h e U n i n v o l v e d N i p p l e , " American J o u r n a l o f S u r g e r y 122 ( 1 9 7 1 ) : 763-764.  61.  A k e h u r s t , p . 182.  62.  B. A v e s , "Swimwear f o r t h e p o s t - m a s t e c t o m y R a d i o g r a p h y 39 ( 1 9 7 3 ) : 159.  63.  M a r k e l , p . 1678.  64.  Klein,  p . 1661. Treatment?,"  p . 1664.  p . 1664.  Patient,"  J . Tenn Med A s s o c  J o u r n a l o f N u r s i n g 72  (April  patient,"  110  65.  H e l e n C. H a r r e l , "To L o s e a B r e a s t , " A m e r i c a n o f N u r s i n g 72 ( A p r i l 1972) : 676-677.  66.  C y r i l M. Worby and Raymond B a b i n e a u , "The F a m i l y I n t e r v i e w : H e l p i n g t h e P a t i e n t and F a m i l y Cope w i t h M e t a s t a t i c D i s e a s e , " G e r i a t r i c s (June 1 9 7 4 ) : 83-94.  67.  A l b e r t Liebman e t a l , " F a m i l y C o n f e r e n c e i n t h e Care o f t h e C a n c e r P a t i e n t , " The J o u r n a l o f F a m i l y P r a c t i c e 2 ( 1 9 7 5 ) : 343-345.  68.  F r a n c i s Lomas F e l d m a n , Work and C a n c e r H e a l t h H i s t o r i e s : A S t u d y o f The E x p e r i e n c e s o f R e c o v e r e d 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 i v . , May 1 9 7 6 ) .  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 o f P s y c h o s o c i a l F a c t o r s on t h e R e h a b i l i t a t i o n o f t h e C a n c e r 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 1 9 7 5 ) : 1821.  70.  P e t e r M a g u i r e , "The P s y c h o l o g i c a l and S o c i a l C o n s e q u e n c e s o f B r e a s t C a n c e r , " N u r s i n g M i r r o r ( A p r i l 1 9 7 4 ) : 54-57.  71.  F r a n k W. Norman, " P r o b l e m s o f a G e n e r a l P r a c t i t i o n e r M a n a g i n g D i s s e m i n a t e d B r e a s t C a n c e r , " C a n c e r 28 (December 1 9 7 1 ) : 1702-1703  72.  A r t h u r P e c k arid J o h n B o l a n d , " E m o t i o n a l R e a c t i o n s t o R a d i a t i o n T r e a t m e n t , " C a n c e r 40 ( J u l y 1 9 7 7 ) : 180-184.  73.  G o l d s m i t h , p.  74.  Ervin,  75.  M a r k e l , p.  76.  Harrell,  77.  J.M. T r a c h t e n b e r g , Team I n v o l v e m e n t and t h e P r o b l e m s I n c u r r e d , a paper p r e s e n t e d a t the 15th Annual C l i n i c a l C o n f e r e n c e on P r o g r e s s i n t h e R e h a b i l i t a t i o n o f t h e C a n c e r P a t i e n t , H o u s t o n T e x a s , 19 70, c i t e d by R o b e r t a K l e i n , "A C r i s e s t o Grow On," C a n c e r 39 ( F e b r u a r y 1 9 7 1 ) : - 1 1 6 5 .  78.  L a w r e n c e W i n i c k and Guy F. R o b b i n s , " P h y s i c a l and P s y c h o l o g i c a l A d j u s t m e n t A f t e r M a s t e c t o m y (An E v a l u a t i o n o f t h e PMRG P r o g r a m ) , " C a n c e r 39 ( F e b r u a r y 1 9 7 7 ) : 478-486.  79. 80.  p.  1672-1675.  75. 1676  p.  676  Ibid. Wellisch,  Journal  432-436.  Ill  81.  P e c k , p.  284-291.  82.  Schoenbert  83.  P e c k , p.  84.  Schoenbert  85.  Roberts e t a l , p.  and C a r r , p .  119-131.  284-291. and C a r r ,  p.  119-131.  301-302.  SELECTED BIBLIOGRAPHY Bernay,  T. E l e m e n t s o f a P s y c h o l o g i c a l P r o f i l e o f t h e 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 A r b o r M i c h i g a n : 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, M u r r a y . "The U s e o f F a m i l y T h e o r y i n C l i n i c a l C o m p a r a t i v e P s y c h i a t r y . 7 (1966) : 345-373.  Practice."  B u t l e r , Ada. " B r e a s t Cancer." 1 9 7 6 ) : 17-22.  (June  The C a n a d i a n N u r s e . 7 2  C r a i g , Thomas J . "The Q u a l i t y o f S u r v i v a l i n B r e a s t C a n c e r : A c a s e - c o n t r o l comparison." C a n c e r . 3 3 (May 1 9 7 4 ) : 1451-1457. The  Impact C o s t and C o n s e q u e n c e s o f 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 Y o r k : Cancer Care, Inc. and N a t i o n a l C a n c e r F o u n d a t i o n , I n c . , M a r c h 1973.  J a c k s o n , D. "On t h e Q u e s t i o n o f F a m i l y H o m e o s t a s i s . " P s y c h i a t r i c Q u a r t e r l y S u p p l e m e n t . 3 1 ( 1 9 5 7 ) : 79-86. Johnson,  S h e r r y W. "Role o f 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 1 9 7 7 ) : 257-259.  K a p l a n , D a v i d M.; G r o b s t e i n , Rose; and S m i t h , A a r o n . " P r e d i c t i n g t h e Impact o f S e v e r e 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 ( A u g u s t 1 9 7 6 ) : 71-82. Ushner,  Rose. B r e a s t C a n c e r : 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 R e p o r t . New Y o r k : H a r c o u r t , B r a c e , J a v a n o v i c h , c . 19 75.  Magarey, C h r i s t o p h e r J . and Todd, P e t e r B. "The D o c t o r 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 F a m i l y P h y s i c i a n . 6 (March 1 9 7 7 ) : 243-244, 248-249, 251. P r i e s t m a n , 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 Breast Cancer." The L a n c e t . 7965. ( A p r i l 1 9 7 6 ) : 899-900. Q u i n t , J e a n n e C. "The Impact o f M a s t e c t o m y . American o f N u r s i n g . 63 (November 1 9 6 3 ) : 88-92.  Journal  Schoenfeld, Jacob. "Psychological Factors Related to Delayed R e t u r n 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 . " Journal o f Psychosomatic Research. 16 ( F e b r u a r y 1 9 7 2 ) : 41-46.  113  S m i t h , 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 T h e r a p y 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 ( O c t o b e r 1 9 7 7 ) : 752-754.  114  APPENDIX A  Dear A r e s e a r c h p r o j e c t t o d i s c o v e r some o f t h e e x p e r i e n c e s and needs o f new b r e a s t c a n c e r p a t i e n t s t o t h e A. M a x w e l l E v a n s C l i n i c and t h e i r f a m i l i e s i s b e i n g u n d e r t a k e n u n d e r t h e a u s p i c e s o f t h e S o c i a l S e r v i c e D e p a r t m e n t o f t h e A. M a x w e l l Evans C l i n i c . We a r e c o n c e r n e d t o d i s c o v e r what c h a n g e s , i f a n y , 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 a n d their families. A t t h e p r e s e n t t i m e t h e r e i s v e r y l i t t l e known i n t h i s a r e a and, o f c o u r s e , 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 t h e p l a n n i n g o f s e r v i c e s f o r p a t i e n t s . We a r e a s k i n g y o u t o h e l p 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 t o i n t e r v i e w y o u and a member o f y o u r f a m i l y i n s e p a r a t e 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 c o u r s e , a l l i n f o r m a t i o n is confidential. We w i l l be c o n t a c t i n g y o u by t e l e p h o n e w i t h i n t h e n e x t week t o a r r a n g e a p p o i n t m e n t t i m e s and hope y o u 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 with us. Yours  truly,  APPENDIX PATIENT INFORMATION  C  FOR RESEARCH PROJECT  (given t o Out-Patient doctors for researcher)  to f i l l out  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 p e o p l e who gave p r i o r  H e l l o Mrs.  . T h i s i s Margot Jessup c a l l i n g .  D i d Dr.  t e l l you about my s t u d y w i t h new  mastectomy p a t i e n t s ? to p a r t i c i p a t e  I am c a l l i n g t o see i f you would l i k e  i n t h i s study?  t h i s study o r about m y s e l f ? w i t h your also?  consent)  Do you have any q u e s t i o n s about Have you t a l k e d t h e study over  (primary c a r e - g i v e r ) ? Would he/she l i k e t o p a r t i c i p a t e  I would l i k e t o t a l k w i t h you b o t h , i n d i v i d u a l l y , i f  t h i s i s c o n v e n i e n t w i t h you. i n t e r v i e w you and your  What time would be t h e b e s t t o  (primary c a r e - g i v e r ) ? Would you l i k e  to be i n t e r v i e w e d a t your home o r another p l a c e (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., o r i n t e r v i e w e r ' s home)?  Thank you v e r y much.  See you on  . Bye.  APPENDIX E  INTRODUCTION  ( t o be read by t h e i n t e r v i e w e r t o 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 n c e you found o u t t h a t you have b r e a s t c a n c e r .  You can  h e l p us t o improve s e r v i c e t o o t h e r 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 h e l p a r e v e r y i m p o r t a n t t o u s .  The  changes we a r e t h i n k i n g about have t o do w i t h work, p l a c e o f r e s i d e n c e , changes i n y o u r s e l f and f a 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 h a v i n g a t t h i s  time.  In p a r t i c i p a t i n g i n t h e i n t e r v i e w , you a r e n o t r e q u i r e d t o answer any q u e s t i o n s w i t h which you are n o t c o m f o r t a b l e . Schedule I  - The P a t i e n t I n t e r v i e w Schedule Note:  General  S e c t i o n IV o f P a t i e n t I n t e r v i e w i s a l s o Schedule I I - The P r i m a r y Care-giver Interview  Information  1.  Name:  2.  Address:  3.  Marital Status:  Years M a r r i e d :  119  4.  Members i n Immediate F a m i l y and Age and Employment: Name  Age  Note:  *Those l i v i n g w i t h p a t i e n t  P r e s e n t Employment  **Primary c a r e - g i v e r  5.  E t h n i c Background and Language Spoken a t Home:  6.  Religion:  I  D i a g n o s i s , Treatment and P r e v i o u s E x p e r i e n c e w i t h I l l n e s s To b e g i n t h i s i n t e r v i e w I w i l l ask a few q u e s t i o n s about your t r e a t m e n t .  A.  Diagnosis When d i d you f i r s t know you had b r e a s t c a n c e r ? Date:  B.  What happened a t t h i s time?  Treatment Biopsy?  Date:  120  Mastectomy?  Who t o l d 1st  Date:  y o u a n d how?  Appointment a t Cancer  Previous experience with and o t h e r i l l n e s s e s .  Clinic  - Date?  cancer  Have y o u o r any f a m i l y member h a d any p r e v i o u s e x p e r i e n c e w i t h c a n c e r as an i l l n e s s ?  Previous  illnesses  Is  your  treatment  complete  now?  Yes:  No:  If  "No", how much l o n g e r i s i t e x p e c t e d  to last?  Changes i n P l a c e o f R e s i d e n c e I w o u l d l i k e t o a s k y o u now a b o u t of r e s i d e n c e .  your  place  Open: Are you a r e s i d e n t o f 1.  F o r how l o n g have y o u l i v e d i n t h e c i t y of ? Years:  (or d i s t r i c t Months:  2.  D u r i n g t h e p a s t two y e a r s have y o u c h a n g e d y o u r address? Yes: No:  3.  S i n c e y o u f o u n d o u t y o u h a d b r e a s t c a n c e r have y o u changed y o u r a d d r e s s : Yes: No: Have y o u made p l a n s t o do s o ? Yes:  No:  I f "Yes", was y o u r d e c i s i o n t o move i n f l u e n c e d i n any way by y o u r d i s c o v e r y t h a t y o u have b r e a s t c a n c e r ?  121  III  Changes i n Work A c t i v i t i e s O u t s i d e and T r a n s p o r t a t i o n  t h e Home  Now I would l i k e t o ask you about work a c t i v i t i e s o u t s i d e t h e 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.  A r e you employed o u t s i d e t h e home? Yes:  B.  No:  Do you do v o l u n t e e r work? Yes:  (specify)  No: Do you a n t i c i p a t e your treatment v o l u n t e e r work? Yes:  w i l l a f f e c t your (specify)  No: C.  I f employed o u t s i d e t h e home: 1)  What i s your job?  2)  F o r how l o n g have you worked a t t h i s Years:  3)  job?  Months:  A r e you w o r k i n g 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 t o work? Yes:  (When?)  No: b) I f "No", does t h i s have a n y t h i n g t o do w i t h : i)  Your p r e s e n t  illness? Ye s :  ii)  No :  Other r e c e n t o r c u r r e n t i l l n e s s e s o f yours o r f a m i l y members? Yes:  No:  122  iii)  Previous experiences with Yes:  iv)  4)  No:  Other? ( S p e c i f y )  I f you a r e c u r r e n t l y w o r k i n g o r 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 h e r e be a change i n h o u r s , j o b 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 o r income? Yes: a)  No:  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 t o you t h e r e may be a change? Yes:  ii)  iii)  No:  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 t o c o n t i n u e your p r e s e n t job? Yes:  B.  cancer?  No:  Do you f e e l these changes a r e i n any way a r e s u l t o f your i l l n e s s ? Yes:  No:  Yes:  No:  Transportation Do you d r i v e a c a r ? a)  I f "Yes", a r e you a b l e t o d r i v e now? Yes:  b)  No:  I f "No", does someone d r i v e you? Yes: i ) I f "Yes", who?  No:  123 c)  IV  What t r a n s p o r t a t i o n do you have t o your t r e a t m e n t s at t h e Maxwell Evans C l i n i c ?  New F a m i l y Concerns, R o l e s and R e s p o n s i b i l i t i e s Note:  T h i s S e c t i o n i s a l s o Schedule I I - The P r i m a r y Care-Giver Interview  I would now l i k e t o 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, d a u g h t e r , mother, e t c . ) has b r e a s t c a n c e r may have had on f a 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 h a v i n g a t t h i s t i m e . A.  B.  Major Concerns and P e r c e p t i o n o f Changes 1.  I n g e n e r a l , c o u l d you t e l l me t h e main concerns you and your f a m i l y have a t t h i s t i m e , s i n c e you found o u t (or your spouse, d a u g h t e r , mother) has breast cancer?  2.  S i n c e t h e d i a g n o s i s , what a r e t h e most i m p o r t a n t changes, i f any, you have n o t i c e d i n your f a m i l y ?  P r a c t i c a l 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 We have a l i s t o f p r a c t i c a l changes which p e o p l e have o f t e n e x p e r i e n c e d . We wondered i f any o f t h e f o l l o w i n g changes a p p l y t o you? A.  P l e a s e 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", t h e share o f r e s p o n s i b i l i t i e s o f each f a m i l y member and o t h e r s b e f o r e t h e d i a g n o s i s . For " c h i l d r e n " and "others" p l e a s e i n d i c a t e name as w e l l as t h e share o f r e s p o n s i b i l i t y .  124  TABLE A:  BEFORE DIAGNOSIS Patient  1.  Earning  Income  2.  Sitting bills  down t o  3.  Washing  dishes  4.  Meals  5.  House  6.  Shopping (Groceries)(Supplies)  7.  Yard  8.  Volunteer  9.  Making arrangements for social v i s i t s for the f a m i l y  10.  Other  Spouse  Children  pay  cleaning  work work  I s t h e r e some a r e a o f change i n r e s p o n s i b i l i t i e s n o t on t h i s t a b l e ? Yes: If B.  Other  "Yes", p l e a s e  add  i t to  the  that  is  No: table  as  "Other".  P l e a s e i n d i c a t e by " A l l " , "Most", "Some" o r "None" t h e s h a r e o f r e s p o n s i b i l i t i e s o f e a c h f a m i l y member and others a f t e r the d i a g n o s i s . F o r " C h i l d r e n " and " O t h e r s " p l e a s e i n d i c a t e name as w e l l as s h a r e o f r e s p o n s i b i l i t y .  125  TABLE  AFTER DIAGNOSIS  B:  1.  Earning  2.  S i t t i n g down t o pay b i l l s  3.  Washing  4.  Meals  5.  House c l e a n i n g  6.  Shopping (Groceries)(Supplies)  7.  Yard  8.  Volunteer  9.  Making arrangements for social v i s i t s f o r the f a m i l y  10.  Other  3.  Income  dishes  work work  Do you f e e l you w i l l be a b l e t o c a r r y on y o u r r e g u l a r h o u s e h o l d r e s p o n s i b i l i e s and c h o r e s ? The  4.  Others  Children  Spouse  Patient  same as b e f o r e  Nearly  as  Not  well?  as  How c o n c e r n e d changes? Not  at  diagnosis?  well?  I f c h a n g e s were n o t e d a)  the  i n the  a r e you  above  right  now  table: about each o f  these  all?  Somewhat?  b)  A great  deal?  Are  concerned  you  More: than  The  about the  above  Same:  before your w i f e ' s , e t c .  or  responsibilities: Less:  (or your)  diagnosis?  I f more i s t h i s c o n c e r n connected t o your w i f e ' s , e t c . (or your) i l l n e s s ? Yes: 5.  C o u l d you t e l l me w h i c h o f the f a m i l y changes we have t a l k e d about i s of most c o n c e r n t o you now? Next? E t c .  Services Now 6.  No:  R e c e i v e d and S e r v i c e s  Requested  I would l i k e t o say a word about s e r v i c e s .  Have you o r your f a m i l y had any o f 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 p r o v i d e d t h i s s e r v i c e and when) a) T r a n s p o r t a t i o n : _ _ b) Household help:_ c) I n f o r m a t i o n s e r v i c e s : d) C o u n s e l l i n g :  Individual: Family:  e) Groups w i t h o t h e r p a t i e n t s and f a m i l i e s : f) O t h e r : 7.  D i d you r e c e i v e t h e s e s e r v i c e s when you wanted them? Yes:  8.  No:  Would any of t h e above s e r v i c e s be h e l p f u l t o 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 w o u l d l i k e t o t a l k a b o u t any e f f e c t s t h a t f i n d i n g o u t t h a t y o u h a d b r e a s t c a n c e r m i g h t have on y o u r r e l a t i o n s h i p s w i t h y o u r f a m i l y and f r i e n d s . 1.  S i n c e y o u f o u n d o u t t h a t y o u have 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 have c h a n g e d w i t h any o f t h e following: Yes No Spouse Child Parent Doctors Friends Relative Other a)  2.  (Specify)  I f "Yes" c o u l d y o u t e l l  me any more a b o u t  Do y o u s e e any more o r l e s s o f y o u r More: a)  Less:  Who u s u a l l y i n i t i a t e s Spouse: i)  Is t h i s  f r i e n d s now?  A b o u t t h e same: these  Self:  contacts: Friends:  3.  Other:  a change? Yes:  ii)  this?  I f "Yes" c o u l d you t e l l  No: me more a b o u t i t ?  I f " Y e s " t o any change above a r e y o u c o n c e r n e d o r w o r r i e d about these changes? A great deal: Some:  Not a t a l l :  128  a)  I f concerned a r e you w o r r i e d about these More:  The same:  changes:  or Less:  than b e f o r e d i a g n o s i s ? Have you been a b l e t o handle these changes w i t h o u t serious d i f f i c u l t y ? Yes: 4.  No:  Do you f e e l your own b e h a v i o u r 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 o f t h e f o l l o w i n g : Yes  No  Spouse Child Parent Doctors Friends Relatives Other ( S p e c i f y ) a)  I f "Yes" c o u l d you t e l l me any more about i)  this?  To what e x t e n t do you see these changes as connected t o your i l l n e s s ? A great deal:  Somewhat  Not a t a l l : i i ) Do you have any c o n c e r n about these changes i n your b e h a v i o u r ? No c o n c e r n s :  Some:  A great deal: I would now l i k e t o t a l k about who has h e l p e d you d e a l w i t h t h e k i n d s o f changes we have been d i s c u s s i n g i n this interview.  129 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 list) : Spouse Child Parent Doctors A Maxwell  Evans C l i n i c  Staff  Friends Clergyman Relatives Other 7.  (Specify)  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 most 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 most b e f o r e the d i a g n o s i s ? Yes:  ( I f "No" s p e c i f y who h e l p e d most b e f o r e )  No:  I f " Y e s " , have y o u n o t i c e d do f o r y o u now?  a change  i n things  Yes:  Changes i n F e e l i n g s  about  No:  Self  I w o u l d l i k e t o a s k y o u a few q u e s t i o n s a b o u t f e e l i n g s about y o u r s e l f . 1.  How much w o u l d y o u s a y y o u r f e e l i n g s a b o u t have c h a n g e d t o w a r d any o f t h e f o l l o w i n g : a)  feelings Unable  of personal  t o say  (he/she)  your  yourself  attractiveness  Not a t A l l A great  deal  b)  f e e l i n g s o f b e i n g competent t h e home  c)  ability  t o be i n d e p e n d e n t  Somewhat  within  and o u t s i d e  130 d)  f e e l i n g s toward f u l f i l l i n g and b e i n g r e s p o n s i b l e  others'  e)  f e e l i n g s of being able to maintain o f income and l i v i n g c o n d i t i o n s  f)  other  expectations present  (specify)  I f somewhat o r a g r e a t d e a l , w h i c h o f t h e you t h e most? Next? 2.  above  concerns  Of a l l y o u r c o n c e r n s w h i c h we have m e n t i o n e d i n t h i s i n t e r v i e w , what w o u l d you most l i k e h e l p w i t h a t 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 h e l p the Maxwell Evans C l i n i c i t s s e r v i c e t o p a t i e n t s and f a m i l i e s . 3.  level  Would y o u Do  you  like  have any  Thank you  t o add  any  questions  f u r t h e r comments? you  v e r y much f o r y o u r  w i s h t o ask  me?  participation.  improve  

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}]}"
                            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:
http://iiif.library.ubc.ca/presentation/dsp.831.1-0094254/manifest

Comment

Related Items