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A course for caregivers : group work as an intervention with family caregivers of hospitalized elderly Book, Elaine Susan 1994

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A COURSE FOR CAREGIVERS: GROUP WORK AS AN INTERVENTION WITH FAMILY CAREGIVERS OF HOSPITALIZED ELDERLY  By ELAINE SUSAN BOOK B.S.W., The U n i v e r s i t y of Manitoba, 1987  A THESIS SUBMITTED  IN PARTIAL FULFILLMENT  OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SOCIAL WORK in FACULTY OF GRADUATE STUDIES (School of S o c i a l Work)  We accept t h i s t h e s i s as conforming to the r e a u i r e d standard  THE UNIVERSITY OF BRITISH COLUMBIA J u l y , 1994 ® E l a i n e Susan Book, 1994  In  presenting  degree freely  at  this  the  thesis  in  University  of  partial  of  department publication  this or of  thesis by  his  for  and study. I further  or  this thesis for  of  her  DE-6 (2/88)  ^.xkxj  representatives.  6r-x.;/ai U^&lK  H  requirements that the  agree be  It  financial gain shall not  The University of British Columbia Vancouver, Canada  Date  the  scholariy purposes may  permission.  Department  of  British Columbia, I agree  available for reference  copying  fulfilment  is  for  an  Library shall make  that permission for granted  by the  understood  be allowed  advanced  that  it  extensive  head  of  copying  my or  vk^thout my written  ABSTRACT  The  o b j e c t i v e of t h i s study was  t o examine the e f f e c t s of a  s h o r t - t e r m support group on the r e p o r t e d caregivers  of h o s p i t a l i z e d e l d e r l y .  to provide d e s c r i p t i v e information caregiving  experience and  the  s t r e s s of  family  In a d d i t i o n , i t was on c a r e g i v e r  designed  stress,  factors that influence  the  the  experience. The  sample of e i g h t c a r e g i v e r s ,  drawn from a g e r i a t r i c  r e h a b i l i t a t i o n h o s p i t a l , completed a s t r e s s s c a l e p r e - and group involvement as w e l l as p a r t i c i p a t e d i n an interview.  Q u a l i t a t i v e data was  post-  in-depth  analyzed u s i n g a m o d i f i e d  grounded t h e o r y approach. The  r e s u l t s from t h i s study i n d i c a t e t h a t d e s p i t e  changes i n p e r c e p t i o n  of s t r e s s f o l l o w i n g group involvement,  t h e r e are b e n e f i t s t o be d e r i v e d caregiver  few  support group.  from p a r t i c i p a t i o n i n a  As a group, respondents  reported  minimal change i n t h e i r experience of s t r e s s both d u r i n g  the  interviews  However,  as w e l l as on the  standardized  respondents d i d i n d i c a t e an i n c r e a s e d f e e l i n g more c o n f i d e n t caregiving. the  and  stress scale.  sense of support as w e l l  prepared f o r the c h a l l e n g e s of  S i m i l a r to previous studies, caregivers  support group program g e n e r a l l y  reported  who  attended  s a t i s f a c t i o n with  the group e x p e r i e n c e . The  study h i g h l i g h t s the  differences  i n caregiving  as  s i g n i f i c a n c e of i n d i v i d u a l  s i t u a t i o n s and  i n the experience of  caregiver stress.  The study a l s o addresses i s s u e s of  a c c o u n t a b i l i t y w i t h i n s o c i a l work p r a c t i c e and p r o v i d e s d i r e c t i o n f o r f u t u r e s e r v i c e d e l i v e r y t o f a m i l y c a r e g i v e r s of e l d e r l y persons.  TABLE OF CONTENTS  Page ABSTRACT  i i  TABLE OF CONTENTS  iv  LIST OF TABLES  vi  LIST OF FIGURES  v i i  ACKNOWLEDGEMENT  viii  CHAPTER ONE:  INTRODUCTION  Statement of the Problem Purpose Importance of the I n q u i r y O r g a n i z a t i o n o f T h e s i s Content CHAPTER TWO: LITERATURE REVIEW Introduction Chronic I l l n e s s Family Members as C a r e g i v e r s A C o n c e p t u a l i z a t i o n of S t r e s s Group Work as an I n t e r v e n t i o n S t r a t e g y Summary CHAPTER THREE:  6 6 7 11 12 18  THEORETICAL FRAMEWORK  Introduction T h e o r e t i c a l Framework Research Question CHAPTER FOUR:  2 2 2 5  19 19 24  METHODOLOGY  Introduction D e s c r i p t i o n of Support Group Program R a t i o n a l f o r the Research Method Research Design Sampling Procedures Instruments Perceived Stress Scale In-depth Interviews Demographic P r o f i l e E v a l u a t i o n Form C r e d i b i l i t y and Soundness Data C o l l e c t i o n Procedures Assumptions  26 26 28 29 29 31 31 32 34 34 34 36 37  Limitations E t h i c a l Considerations Data A n a l y s i s Summary CHAPTER FIVE:  37 41 42 44  PRESENTATION OF FINDINGS  Introduction 45 Sociodemographic C h a r a c t e r i s t i c s of t h e Sample 45 Findings 51 Q u a l i t a t i v e A n a l y s i s of Interviews 51 Q u a n t i t a t i v e A n a l y s i s o f P e r c e i v e d S t r e s s Scale....70 L i n k i n g Q u a l i t a t i v e and Q u a n t i t a t i v e Data 73 Support Group E v a l u a t i o n Form 73 Summary 78 CHAPTER SIX:  DISCUSSION OF FINDINGS  Introduction A C o n c e p t u a l i z a t i o n o f C a r e g i v e r S t r e s s and t h e E f f e c t s of Support Group Involvement Interviews Perceived Stress Scale L i n k i n g Interviews and P e r c e i v e d S t r e s s S c a l e E v a l u a t i o n Form Summary CHAPTER SEVEN:  CONCLUSIONS,  79 82 85 86 87 89  IMPLICATIONS, RECOMMENDATIONS  Introduction Conclusions I m p l i c a t i o n s f o r S o c i a l Work P r a c t i c e C l i n i c a l Practice Public Policy Recommendations f o r F u r t h e r Research REFERENCES  79  90 90 93 93 95 96 97  APPENDICES Appendix Appendix Appendix Appendix Appendix Appendix Appendix Appendix Appendix Appendix Appendix  A: B: C: D: E: F: G: H: I: J: K:  Support Group Program Content 103 U n i v e r s i t y o f B r i t i s h Columbia Approval... 104 Holy Family H o s p i t a l Approval 105 Support Group Information L e t t e r 106 L e t t e r Requesting P a r t i c i p a t i o n i n Study..107 Perceived Stress Scale 108 Interview Guide 110 Demographic P r o f i l e I l l E v a l u a t i o n Form 112 Consent Form 113 Example o f a T r a n s c r i p t 114  LIST OF TABLES  Table  Page  1  Sample Demographics  46  2  Summary o f Sample Demographics  50  3  Summary of Stages and Themes, Interview  4  Scores o f P e r c e i v e d  5  L i n k i n g Q u a l i t a t i v e and Q u a n t i t a t i v e Data  74  6  R e s u l t s from t h e E v a l u a t i o n Form  76  Data  Stress Scale  52 71  LIST OF FIGURES  Figures  Page  1  C a r e g i v e r S t r e s s - C o p i n g Model  20  2  C a r e g i v e r S t r e s s - C o p i n g Model, Revised  23  3  Bar Graph of P e r c e i v e d S t r e s s S c a l e Scores  72  4  C o n c e p t u a l i z a t i o n of C a r e g i v e r S t r e s s and the E f f e c t s of Support Group Involvement on S t r e s s  80  ACKNOWLEDGEMENT  In d i f f e r e n t ways, many people have c o n t r i b u t e d t o t h i s r e s e a r c h p r o j e c t and t h e completion of t h i s t h e s i s . I would l i k e t o acknowledge E l a i n e S t o l a r , f a c u l t y a d v i s o r , f o r her time and v a l u a b l e guidance over t h e past two y e a r s .  I  would a l s o l i k e t o acknowledge t h e e f f o r t s of Paule M c N i c o l l and Mary H i l l i n reviewing  my t h e s i s .  I would l i k e t o express a p p r e c i a t i o n t o :  Holy  Family  H o s p i t a l f o r e n a b l i n g me t o p a r t i c i p a t e i n the program and f o r a l l o w i n g t h e r e s e a r c h t o occur colleagues  i n t h e h o s p i t a l ; my f r i e n d s and  f o r t h e i r h e l p f u l and s u p p o r t i v e c o n v e r s a t i o n s ; and  the c a r e g i v e r s f o r t h e i r time and openness without which the r e s e a r c h would not have been completed. Most i m p o r t a n t l y , never ending support,  I want t o thank my husband, David, f o r h i s encouragement and p a t i e n c e .  Chapter  One  Introduction  Canada has the number and 1986).  and continues proportion  t o experience a steady i n c r e a s e i n  of o l d e r a d u l t s  With advanced age,  t h e r e i s an i n c r e a s e i n v u l n e r a b i l i t y  to chronic d i s a b l i n g diseases f o r emotional, p h y s i c a l and p a r t of the p o p u l a t i o n .  ( S t a t i s t i c s Canada,  —  c o n d i t i o n s which c r e a t e a need  instrumental  The  support f o r a growing  c e n t r a l r o l e of the f a m i l y i n  p r o v i d i n g such support t o the f r a i l e l d e r l y has  been documented  e x t e n s i v e l y as w e l l as r e c o g n i t i o n t h a t such involvement create excessive Clarke has  demands f o r the f a m i l y c a r e g i v e r  & Rakowski, 1983;  Shanas, 1979).  the p o t e n t i a l t o n e g a t i v e l y impact a  p s y c h o l o g i c a l , s o c i a l and  (Brody,  1985;  S t r e s s from c a r e g i v i n g caregiver's  physical well-being  R o s s i t e r , Peak & Smith, 1990).  can  (Toseland,  As h o s p i t a l i z a t i o n of a r e l a t i v e  o f t e n marks the beginning of the c a r e g i v i n g r o l e , i t i s a time of c r i s i s f o r many (Hamlet & Reid, t h a t p r a c t i c e and  research  1990).  I t has  been suggested  need t o focus on c a r e g i v e r s e a r l i e r i n  t h e i r c a r e g i v i n g tenure and when demands are more extreme (Malonebeach & Z a r i t , 1991).  Given t h i s , and  t h a t group work as  an i n t e r v e n t i o n m o d a l i t y w i t h f a m i l y c a r e g i v e r s has acceptance i n the community s e t t i n g (Toseland it  gained  & R o s s i t e r , 1989),  i s i n t r i g u i n g t o i n v e s t i g a t e the e f f e c t of group work w i t h  f a m i l y c a r e g i v e r s i n the h o s p i t a l s e t t i n g .  statement of Problem A review of the l i t e r a t u r e encourages the use groups w i t h f a m i l y c a r e g i v e r s r e l a t e d concerns.  as a means t o address  However, l i t t l e a t t e n t i o n has  s p e c i f i c a l l y to family caregivers e f f e c t s of a h o s p i t a l - b a s e d  of support caregiver-  been  given  of h o s p i t a l i z e d e l d e r l y and  support group on c a r e g i v e r  the  stress.  Purpose The  purpose of t h i s study i s t o :  a) examine the e f f e c t s of  a s h o r t - t e r m support group on s t r e s s of f a m i l y c a r e g i v e r s h o s p i t a l i z e d e l d e r l y ; b) p r o v i d e d e s c r i p t i v e i n f o r m a t i o n caregiver  s t r e s s , the c a r e g i v i n g experience and  i n f l u e n c e the experience; and  of on  the f a c t o r s t h a t  c) examine the r e l a t i o n s h i p between  s t r e s s s c o r e s , demographic c h a r a c t e r i s t i c s and  the  caregiving  experience.  Importance of the  Inquiry  T h i s i n q u i r y i s r e l e v a n t t o the f i e l d of s o c i a l work f o r many reasons.  W i t h i n h e a l t h c a r e s e t t i n g s , s o c i a l workers are  i n c r e a s i n g l y under s c r u t i n y . competition  With budget c o n s t r a i n t s  and  from other h e a l t h care p r o f e s s i o n a l s , and w i t h  apparent p r o l i f e r a t i o n of s e l f - h e l p groups l e d by h e a l t h consumers, s o c i a l work departments across placé emphasis on a c c o u n t a b i l i t y and E l i m i n a t i o n of d e f i c i e n c i e s has c a r e and  thus, e v a l u a t i o n  the  care  Canada are needing t o  e m p i r i c a l l y based p r a c t i c e .  become a c r i t i c a l  issue i n health  of s e r v i c e needs t o move beyond the  peer a u d i t s of the past provide  (Simon, 1991).  Evaluative research  evidence of s o c i a l work's c o n t r i b u t i o n i n  addressing  p s y c h o s o c i a l concerns w i t h i n a m u l t i d i s c i p l i n a r y h e a l t h setting  (Berkman, 1990).  can  By examining outcomes of the  care support  group, t h i s study begins t o address a c c o u n t a b i l i t y of s o c i a l work p r a c t i c e and  programs.  As r e s e a r c h i s not f i r m l y entrenched i n  h e a l t h c a r e s o c i a l workers' t h i n k i n g and p r a c t i c e (Kane, 1983), t h i s study i s v a l u a b l e as i t c o n t r i b u t e s t o f u l f i l l i n g c r i t i c a l need t o move on from anecdotal  r e p o r t s as the b a s i s f o r  expanding the p r o f e s s i o n ' s knowledge base. p r o f e s s i o n recognizes i t s s t a t u s and goals  the  The  s o c i a l work  the v i t a l r o l e r e s e a r c h p l a y s i n f u r t h e r i n g ( T u r n b u l l , S a l t z & Gwyther, 1988)  i n f l u e n c i n g p r a c t i c e (Coulton,  1985).  F u r t h e r , the  h i g h l i g h t s the importance of consumer feedback and  and  study involvement,  conveying a message of i n t e r e s t and concern t o the p u b l i c . As the support  group program on which t h i s study focuses i s  a newly developed program, the i n v e s t i g a t i o n i s a beginning i n e v a l u a t i n g the program, g e n e r a t i n g  information that  step  will  d i r e c t f u t u r e c a r e g i v e r program p l a n n i n g w i t h i n h o s p i t a l s e t t i n g s as w e l l as i n the community. i n f o r m s o c i a l workers and i s s u e s and  The  information revealed  will  other h e a l t h c a r e p r o f e s s i o n a l s as t o  needs of f a m i l y c a r e g i v e r s .  An awareness  and  understanding of the s t r e s s e s evoked by c a r e g i v i n g i s necessary if  l i f e s a t i s f a c t i o n i s t o be maintained f o r both the  and c a r e r e c e i v e r (Robinson & Thurnher, 1979). the p l i g h t of c a r e g i v e r s has  caregiver  Inattention to  i m p l i c a t i o n s f o r the i n d i v i d u a l ,  the  c a r e r e c e i v e r , t h e f a m i l y system, t h e workplace, and t h e p u b l i c h e a l t h care system.  The g r e a t e r t h e burdens p e r c e i v e d  by t h e  c a r e g i v e r o f t h e c a r e g i v i n g s i t u a t i o n , t h e more l i k e l y t h e p h y s i c a l , s o c i a l and emotional w e l l - b e i n g  of t h e c a r e g i v e r  will  s u f f e r , and t h e l e s s he/she w i l l be able t o c o n t i n u e t o provide care  ( M c C a l l i o n , Toseland & D i e h l , 1994; M i l l e r ,  1989).  The care  r e c e i v e r may then s u f f e r d i r e c t consequences ( i e . i n s u f f i c i e n t care) as may t h e e n t i r e f a m i l y system ( i e . negative  f e e l i n g s may  develop i n c l u d i n g g u i l t and resentment l e a d i n g t o poor communication p a t t e r n s ) .  The workplace a t l a r g e may a l s o be  impacted as s t r e s s e d c a r e g i v e r s s t r u g g l e w i t h meeting home and work demands ( M c C a l l i o n e t a l , 1994).  F i n a l l y , the health  system i t s e l f tends t o be e f f e c t e d as s t r e s s e d c a r e g i v e r s  care often  r e q u i r e s e r v i c e s f o r themselves and then a d d i t i o n a l s e r v i c e s f o r t h e i r care r e c e i v e r (Abel, 1990). i m p l i c a t i o n s , decreasing  As a r e s u l t of t h e many  c a r e g i v e r s t r e s s i s an important outcome  to investigate. The  study i s a l s o o f importance as i t f u r t h e r supports t h e  e x i s t i n g l i t e r a t u r e on t h e b e n e f i t s of group work and strengthens the case by moving beyond i n f o r m a l p a r t i c i p a n t feedback t o methods o f q u a n t i t a t i v e and q u a l i t a t i v e a n a l y s i s . imperative  Thus, i t i s  t h a t s o c i a l workers examine t h e e f f e c t s o f  p r o f e s s i o n a l l y l e d support groups t o meet q u a l i t y assurance requirements, t o j u s t i f y t h e ongoing e x i s t e n c e programs, and t o p r o v i d e (Peterson  of these group  f u t u r e p r a c t i c e and p o l i c y d i r e c t i o n s  & Anderson, 1984; T u r n b u l l e t a l . , 1988).  Summary and O r g a n i z a t i o n In sum, research  and  of T h e s i s  Content  the o b j e c t i v e of the study i s t o begin t o p r a c t i c e i n the f i e l d of c a r e g i v i n g by  c l i n i c a l d a t a and  link  gathering  u s i n g i t as a b a s i s f o r a c t i o n ( i e . f u t u r e  programs, advocacy f o r c a r e g i v e r s ) . The  t h e s i s has been organized  introduced and  as f o l l o w s :  Chapter One  has  the i s s u e of f a m i l y c a r e g i v i n g , presented the problem  reasons f o r i t s e x p l o r a t i o n .  Chapter Two  provides  a  comprehensive l i t e r a t u r e review of p e r t i n e n t areas i n c l u d i n g chronic  i l l n e s s , r o l e of the f a m i l y as c a r e g i v e r s , s t r e s s  support groups, and past r e l e v a n t s t u d i e s . describes  Chapter Three  the t h e o r e t i c a l framework f o r the study.  Chapter Four  d e t a i l s the methodology of the study and Chapter F i v e the f i n d i n g s .  Chapter S i x d i s c u s s e s  theory,  the f i n d i n g s and  presents the t h e s i s  i s concluded w i t h Chapter Seven which h i g h l i g h t s i m p l i c a t i o n s f o r s o c i a l work p r a c t i c e and  recommendations f o r f u t u r e  research.  Chapter  Two  L i t e r a t u r e Review  Introduction In t h i s chapter,  a review of the l i t e r a t u r e on the t o p i c  areas of c h r o n i c i l l n e s s , support  f a m i l y c a r e g i v e r s , s t r e s s theory,  groups and past r e l e v a n t r e s e a r c h i s presented  and  d i s c u s s e d as i t r e l a t e s t o the study of group work w i t h  family  c a r e g i v e r s of h o s p i t a l i z e d e l d e r l y .  Chronic I t i s evident  Illness  i n the l i t e r a t u r e and h i g h l y v i s i b l e i n  s o c i e t y t h a t Canada i s e x p e r i e n c i n g  a steady i n c r e a s e i n the  number and p r o p o r t i o n of o l d e r a d u l t s In 1991,  ( S t a t i s t i c s Canada, 1986).  approximately 12% of Canada's p o p u l a t i o n were age  65  and  more, twice the p r o p o r t i o n who  were o l d e r a d u l t s i n Canada at the  t u r n of the century  1990;  Aging, 1993).  (Chappell,  National Advisory  Council  on  T h i s segment of the p o p u l a t i o n has r e c e n t l y been  d i v i d e d i n t o age c a t e g o r i e s of the young-old, the m i d d l e - o l d the o l d - o l d , with  and  studies i n d i c a t i n g recent r a p i d increases i n  the o l d - o l d age category  (Chappell).  With advanced age,  there i s  an i n c r e a s e i n v u l n e r a b i l i t y t o c h r o n i c d i s a b l i n g d i s e a s e s ( M a s c i o c c h i , Thomas & M o e l l e r , a d u l t s have one  1984).  Approximately 85%  of o l d e r  or more c h r o n i c c o n d i t i o n s which most f r e q u e n t l y  i n c l u d e heart and c i r c u l a t o r y problems, a r t h r i t i s and rheumatism, hypertension,  chronic  and v i s i o n and hearing problems not  r e l i e v e d by g l a s s e s or a i d e s  ( C h a p p e l l ) . T h i s prevalence  is a  r e s u l t , i n p a r t , of a s h i f t i n the epidemiology of d i s e a s e  from  acute t o c h r o n i c d i s e a s e s as w e l l as a decrease i n a c c i d e n t a l deaths.  Concomitant advances i n medicine and medical technology  have coinbined t o i n c r e a s e the numbers of i n d i v i d u a l s who s e r i o u s trauma and c h r o n i c i l l n e s s 1991).  ( B i e g e l , Sales & S c h u l z ,  A l s o , a decrease i n death r a t e s has  l i k e l i h o o d of person d e v e l o p i n g  increased  the  l a t e r l i f e chronic d i s a b l i n g  c o n d i t i o n s such as Alzheimer's d i s e a s e the prevalence  survive  ( B i e g e l et a l . ) .  of c h r o n i c d i s e a s e s , o n l y a r e l a t i v e l y  Despite  small  proportion  (5-8%) of o l d e r a d u l t s l i v e i n i n s t i t u t i o n a l s e t t i n g s  (Connidis,  1989).  Consequently, i t has been estimated  that  n e a r l y h a l f of a l l n o n i n s t i t u t i o n a l i z e d e l d e r l y persons are l i m i t e d by at l e a s t one  c h r o n i c c o n d i t i o n , c o n d i t i o n s which l i m i t  f u n c t i o n a l a c t i v i t y and m o b i l i t y , and r e q u i r e support ongoing b a s i s  on  an  ( B i e g e l e t a l . ) . As a r e s u l t , the need f o r w e l l -  f u n c t i o n i n g i n f o r m a l support  systems t o p r o v i d e c a r e t o the  e l d e r l y i s of paramount importance.  Family Members as The  Caregivers  c e n t r a l r o l e of the f a m i l y i n c a r i n g f o r the  e l d e r l y p o p u l a t i o n has been documented e x t e n s i v e l y C l a r k e & Rakowski, 1983;  Shanas, 1979).  frail  (Brody,  1985;  The myth of abandonment  of o l d e r a d u l t s by f a m i l y members has been d i s p e l l e d w i t h estimates provided  of 80-90% of care r e c e i v e d by o l d e r a d u l t s by f a m i l y members (Brubaker & Brubaker, 1992;  being Chappell,  1990).  Moreover, c u r r e n t p o l i c i e s r e f l e c t an i n c r e a s e d  on the f a m i l y as an a p p r o p r i a t e 1992)  caregiver  and look t o the f a m i l y as a resource  c o s t s o f long-term care  emphasis  (Barnes, Given & Given, t o hedge the r i s i n g  (Montgomery & Borgatta,  1989).  Clearly,  the involvement o f the f a m i l y , otherwise known as the i n f o r m a l f a m i l y c a r e g i v e r , i s fundamental t o the h e a l t h and w e l l - b e i n g of the aged and i s , i n f a c t , s o c i a l l y and f i n a n c i a l l y necessary. i s important t o r e c o g n i z e ,  It  however, t h a t such involvement has the  p o t e n t i a l t o c r e a t e demands on the c a r e g i v e r which t h e i r a b i l i t y t o manage the s i t u a t i o n .  challenges  Support f o r c a r e g i v e r s ,  whether i t i s p h y s i c a l , emotional, s o c i a l o r f i n a n c i a l , may enable t h e p r o v i s i o n of care t o continue, well-being  may encourage o v e r a l l  f o r both the c a r e g i v e r and care r e c e i v e r , and may even  decrease the r a t e of i n s t i t u t i o n a l i z a t i o n and abuse of the elderly  ( B a i l i e , Norbeck & Barnes, 1988; Gnaedinger, 1989).  In s i m p l e s t  terms, c a r e g i v i n g r e f e r s t o a c t i v i t i e s and  experiences i n v o l v e d i n p r o v i d i n g help and a s s i s t a n c e t o r e l a t i v e s o r f r i e n d s who a r e unable t o p r o v i d e ( P e a r l i n , Mullan, Semple & S k a f f ,  1990).  f o r themselves  While a range of  meanings a r e a t t r i b u t e d t o t h e term ' c a r e g i v e r ' , most s t u d i e s focus on f a m i l y members w i t h i n t h e realm o f c a r e g i v i n g Johnson, 1990).  (Barer &  As a r e s u l t of t h i s and the above mentioned  c r i t i c a l r o l e f a m i l y members p l a y i n the p r o v i s i o n of care t o older adults, the  study focused  s o l e l y on a d u l t  family  caregivers. Brody (1990) suggests t h e r e i s a h i e r a r c h y  i n the f a m i l y  r e l a t i o n s h i p o f c a r e g i v e r t o care r e c e i v e r .  When t h e care  r e c e i v e r i s married, t h e spouse almost i n v a r i a b l y becomes the p r i n c i p a l caregiver.  However, o f t e n due t o l i m i t e d c a p a c i t i e s ,  the e f f o r t s o f t h e e l d e r l y c a r e g i v i n g spouse a r e f r e q u e n t l y supplemented by t h e i r a d u l t c h i l d r e n .  Research i n d i c a t e s t h a t  j u s t as f a m i l y almost i n v a r i a b l y r e f e r s t o spouses o r a d u l t c h i l d r e n , a d u l t c h i l d r e n most o f t e n means a d u l t daughters 1990;  Horowitz, 1985; S t o l l e r ,  of care p r o v i d e d  1983).  S t u d i e s c i t e t h a t 80-90%  by a d u l t c h i l d r e n i s provided  daughter-in-laws ( M i l l e r & Cafasso, 1992). played  by daughters o r  Further,  While e q u a l l y i n c l i n e d t o o f f e r  emotional support, l i n k a g e s e r v i c e s and f i n a n c i a l  support,  daughters a r e much more l i k e l y than sons t o p r o v i d e hands-on a s s i s t a n c e i n c l u d i n g p e r s o n a l household chores and meal p r e p a r a t i o n Horowitz, 1985).  care,  instrumental,  transportation,  (Chappell,  1990; C o n n i d i s ,  Gender d i f f e r e n c e s a r e a l s o b e l i e v e d t o  i n f l u e n c e access t o resources and  the r o l e s  by daughters and sons tend t o be somewhat d i f f e r e n t and  are o f t e n gender-based.  1989;  (Brody,  t h a t may a l l e v i a t e c a r e g i v e r  strain  a p p r a i s a l of t h e c a r e g i v i n g experience ( M i l l e r & C a f a s s o ) . More r e c e n t  studies, i n t e r e s t i n g l y , reveal the increasing  p a r t i c i p a t i o n of sons and husbands i n the r o l e o f c a r e g i v e r (Brubaker & Brubaker, 1992; Kaye & Applegate, 1990). demographic trends  i n c l u d i n g smaller  With  f a m i l i e s and i n c r e a s e d  p r o p o r t i o n o f women i n l a b o r market, d i f f e r e n t p a t t e r n s o f c a r e g i v i n g a r e emerging (Horowitz, 1985).  Necessarily, the  nature o f t h e c a r e g i v i n g r e l a t i o n s h i p v a r i e s between and among  spouses, a d u l t sons and daughters, and d i f f e r e n t issues uniquely However, r e g a r d l e s s  inherent  of age,  generally recognized  s i b l i n g s by v i r t u e of  i n each r e l a t i o n s h i p .  gender or r e l a t i o n s h i p , i t i s  t h a t the t a s k of c a r e g i v i n g i s a s s o c i a t e d  w i t h consequences which c a r e g i v e r s o f t e n p e r c e i v e i e . s h i f t s i n f a m i l y r o l e s and  (Brody, 1985;  Caregiving  as s t r e s s f u l  Cantor, 1983;  adjustment i n  Long, 1991).  can be a rewarding y e t demanding experience.  o f t e n i n v o l v e s a long-term commitment, c h a l l e n g i n g c a r e g i v e r ' s coping 1990).  resources  —  i n f a m i l y homeostasis, d e c l i n e i n  p h y s i c a l h e a l t h , emotional s t r a i n , changes and lifestyle  the  (Toseland,  It  the  R o s s i t e r , Peak & Smith,  Changes i n the care r e c e i v e r ' s h e a l t h and changes i n the  c a r e g i v e r / c a r e - r e c i p i e n t r e l a t i o n s h i p , which are o f t e n caused by c h r o n i c p h y s i c a l and mental h e a l t h problems, are f a c t o r s t h a t create a general  sense of worry and c a r e g i v e r s t r e s s .  Stress  from c a r e g i v i n g has the p o t e n t i a l t o n e g a t i v e l y impact a c a r e g i v e r ' s p s y c h o l o g i c a l , s o c i a l and (Toseland  e t a l . , 1990).  self-blame  (Abel, 1990;  Toseland e t a l . , 1990). f e e l i n g l o n e l y and  well-being  Psychological d i f f i c u l t i e s  with c a r e g i v i n g include depression, g u i l t and  physical  anxiety,  anger, f r u s t r a t i o n ,  McCarthy-Neundorfer,  S o c i a l l y , caregivers often  isolated.  associated  report  C o n f l i c t s w i t h f a m i l y members about  c a r e g i v i n g r e s p o n s i b i l i t i e s are commonly experienced 1983; al.,  1991;  (Cantor,  Abel) as are c o n f l i c t s w i t h the care r e c i p i e n t (Toseland 1990).  A c a r e g i v e r ' s p h y s i c a l h e a l t h may  a r e s u l t of the p h y s i c a l t a s k s r e q u i r e d  a l s o be a t r i s k  (ie. lifting,  et as  toileting,  bathing) as w e l l as a r e s u l t of l i m i t e d time f o r r e s t (McCarthyNeundorfer; Toseland  e t a l . , 1990).  shown t h a t severe and family caregivers  Thus, r e c e n t s t u d i e s have  sometimes overwhelming s t r e s s can a r i s e f o r  (Killeen,  1990;  Long, 1991;  1990;  Rankin, 1990), p o t e n t i a l l y impacting  their  lives.  P e a r l i n et a l . ,  v a r i o u s aspects  of  A C o n c e p t u a l i z a t i o n of S t r e s s L i f e events i n and of themselves are not  stressful.  F u r t h e r , d u r a t i o n , q u a n t i t y and magnitude of an event i n d i v i d u a l l y do not e x p l a i n why some events and others are not An  i n d i v i d u a l ' s personal  some persons are d e b i l i t a t e d ( S t o l a r , MacEntee & H i l l ,  by  1993).  a p p r a i s a l of the meaning of the event i s  what i s of s i g n i f i c a n c e . In the t r a n s a c t i o n a l model, a general approach taken by Lazarus,  s t r e s s i s d e f i n e d as the outcome of i n t e r a c t i o n s between  the organism and the environment (Lazarus & Davidson, 1991).  & Folkman, 1984;  More s p e c i f i c a l l y , an event i n the  environment i s c o n s i d e r e d  t o be a s t r e s s o r only i f the  i n d i v i d u a l ' s a p p r a i s a l s of i t , and of h e r / h i s own suggest t h a t i t i s t h r e a t e n i n g or d i s t u r b i n g . to f i r s t harm, and  Singer  resources,  Appraisal refers  e v a l u a t i n g the s t r e s s o r i n terms of i t s c a p a c i t y t o  do  second, t o a s s e s s i n g the i n d i v i d u a l ' s a b i l i t y t o handle  the s t r e s s o r and the s t r a t e g y most l i k e l y t o reduce the p o t e n t i a l harm (Singer & Davidson, 1991).  Coping then c o n s i s t s of  c o g n i t i v e and b e h a v i o r a l e f f o r t s t o d e a l w i t h the demands t h a t  are a p p r a i s e d as t a x i n g o r exceeding the r e s o u r c e s o f the individual  (Folkman & Lazarus, 1991).  I t i s important t o r e c o g n i z e t h a t a p p r a i s a l s environment r e l a t i o n s h i p s a r e i n f l u e n c e d differences.  coping  by i n d i v i d u a l  Such d i f f e r e n c e s , o r antecedent person  c h a r a c t e r i s t i c s , include patterns oneself  of person-  of m o t i v a t i o n , b e l i e f s about  and the world, and r e c o g n i t i o n  of p e r s o n a l r e s o u r c e s f o r  ( i e . f i n a n c i a l means, s o c i a l and p r o b l e m - s o l v i n g  h e a l t h and energy) (Folkman & Lazarus, 1991). differences  skills,  Individual  i n these v a r i a b l e s may h e l p t o e x p l a i n why an event  may be a p p r a i s e d as a t h r e a t t o one person and as n e u t r a l o r a c h a l l e n g e by another. influenced  The p r o c e s s of a p p r a i s a l may a l s o be  by environmental v a r i a b l e s i n c l u d i n g the nature of the  danger, i t s imminence, p r e d i c t a b i l i t y and d u r a t i o n , existence  and t h e  and q u a l i t y o f s o c i a l support r e s o u r c e s t o f a c i l i t a t e  c o p i n g (Folkman & L a z a r u s ) . ameliorating  S o c i a l support as a f a c t o r i n  the e f f e c t s of s t r e s s  ( B a i l l i e e t a l . , 1988; S i n g e r  & Davidson, 1991) w i l l be addressed f u r t h e r i n the d i s c u s s i o n on group work as an i n t e r v e n t i o n .  Group Work as an I n t e r v e n t i o n  Strategy  In view of the growth and i n c r e a s i n g v u l n e r a b i l i t y o f t h e e l d e r l y population  and the r e s u l t a n t demands on t h e i r f a m i l i e s ,  the development of i n t e r v e n t i o n s t r a t e g i e s f o r f a m i l y  caregivers  has  r e c e i v e d much a t t e n t i o n .  With the r a p i d growth of r e s e a r c h  and  a f f i r m i n g f i n d i n g s on s o c i a l supports as a b u f f e r a g a i n s t the  n e g a t i v e impact o f s t r e s s , p r o f e s s i o n a l s have r e a d i l y adopted an i d e o l o g y o f support i n t e r v e n t i o n and support groups have become a v e r y common form of h e l p o f f e r e d  (Chase-Goodman, 1991; Northen,  1990). W i t h i n the h e a l t h c a r e s e t t i n g , groups have gained r e c o g n i t i o n f o r h e l p i n g p a t i e n t s and f a m i l y members cope w i t h the emotional s t r e s s and s o c i o - e m o t i o n a l problems t h a t o f t e n accompany severe i l l n e s s o r d i s a b i l i t y  (Northen).  More  s p e c i f i c a l l y , the l i t e r a t u r e r e v e a l s support f o r the use o f groups w i t h c a r e g i v e r s o f f r a i l e l d e r l y as a means t o address s t r e s s and other c a r e g i v i n g - r e l a t e d concerns Coleman, 1992; Labrecque,  (Monahan, Greene &  Toseland & R o s s i t e r , 1989; Toseland, R o s s i t e r &  1989).  Support groups most o f t e n r e f e r t o s e l f - h e l p groups and p r o f e s s i o n a l l y l e d support and i n f o r m a t i o n groups.  In g e n e r a l ,  the h e l p i n g dynamic i s a r e c i p r o c a l exchange among i n d i v i d u a l s who have a s i m i l a r problem  (Chase-Goodman, 1991).  a support group p r o v i d e s a forum t o share concerns,  Involvement i n participate  i n the s t r u g g l e s of o t h e r s , t o f e e l normal i n s p i t e of s t r e s s , t o express f e e l i n g s and f e a r s , t o exchange i d e a s , and t o p r o v i d e an o p p o r t u n i t y t o h e l p o t h e r s (Chase-Goodman).  Support groups aim  t o develop cohesiveness, enhance s e l f - e s t e e m , and produce  better  c o p i n g among i t s members. With r e s p e c t t o c a r e g i v i n g , support groups have been developed  f o r spouses, a d u l t c h i l d r e n , f a m i l i e s and f r i e n d s i n  g e n e r a l , and even f o r g r a n d c h i l d r e n .  A review of s e v e r a l group  i n t e r v e n t i o n s t u d i e s , e x i s t i n g support group programs and  ,  personal  experiences i n d i c a t e the emergence of common themes t h a t  are addressed i n these groups:  information  about the  care  r e c e i v e r ' s c o n d i t i o n , coping w i t h f e e l i n g s about c a r e g i v i n g , i s s u e s of unpreparedness, sense of f e e l i n g without o p t i o n s , and  r e s p o n s i b i l i t y , problems i n l i m i t s e t t i n g , r e p r e s s i o n  taboo f e e l i n g s , a need t o  guilt  of  'save' the care r e c e i v e r , c a r e g i v e r s '  need t o take care of themselves, u n f i n i s h e d b u s i n e s s w i t h f a m i l y members, i n t e r p e r s o n a l and  intergenerational relationships,  communication, knowledge of resources home-care s k i l l s Hausman, 1979;  o u t s i d e the group,  ( A l t s c h u l e r , Jacobs & Shiode, 1985;  McCarthy-Neundorfer, 1991;  and  Popky-  Toseland & R o s s i t e r ,  1989). There i s a small but growing body of l i t e r a t u r e documenting the e f f e c t s of support group i n t e r v e n t i o n s i n h e l p i n g c a r e g i v e r s w i t h the consequences of c a r e g i v i n g .  The  family studies  reviewed c o n s i s t e d mostly of p r o f e s s i o n a l l y l e d groups f o r f a m i l y caregivers.  M a j o r i t y of the p a r t i c i p a n t s were women, r e f l e c t i n g  the composition of f a m i l y c a r e g i v e r s i n the g e n e r a l The  groups were short-term  months), u s i n g a s u p p o r t i v e educational 1989;  population.  ( f o u r t o ten s e s s i o n s up t o s i x approach o f t e n i n combination w i t h an  component ( B i e g e l e t a l . , 1991;  Greene & Monohan,  Toseland & R o s s i t e r , 1989). O v e r a l l , w h i l e f i n d i n g s demonstrate t h a t support group  p a r t i c i p a n t s are very  s a t i s f i e d w i t h t h e i r group experience  and  r e p o r t a number of b e n e f i t s r e s u l t i n g from t h e i r group p a r t i c i p a t i o n , f i n d i n g s are l e s s c o n c l u s i v e when measuring  the  e f f e c t s of the groups i n r e l i e v i n g c a r e g i v e r d i s t r e s s ( B i e g e l et al.,  1991;  Toseland & R o s s i t e r , 1989).  Some s t u d i e s have  concluded t h a t group i n t e r v e n t i o n s have y i e l d e d no e f f e c t s on d e p r e s s i o n , coping  (Toseland,  life  1990).  s a t i s f a c t i o n , s o c i a l support  Other s t u d i e s , however, have  more p o s i t i v e r e s u l t s (Clarke & Rakowski, 1983; 1989;  Whitlatch,  significant  Z a r i t , & von  Eye,  1991).  and  revealed  Greene & Monahan,  As an  illustration,  Greene & Monahan (1989) r e p o r t e d a c a r e g i v e r support group program which produced s t a t i s t i c a l l y s i g n i f i c a n t r e d u c t i o n s anxiety,  depression  (Toseland  and  e t a l . , 1989)  f u n c t i o n i n g and  sense of burden. reported  also reported burden and  colleagues  improvements i n p s y c h o l o g i c a l  p o s i t i v e personal  support group involvement.  Toseland and  in  changes i n c a r e g i v e r s  Z a r i t , Anthony & B o u t s e l i s  following (1987)  p o s i t i v e outcomes i n c l u d i n g decreases i n p e r c e i v e d  p s y c h i a t r i c symptoms f o r group p a r t i c i p a n t s .  Despite  unanimous c o n c l u s i v e evidence e i t h e r i n support of  or r e f u t i n g the p o s i t i v e e f f e c t s of support groups, the review of past  studies provides  valuable  information  regarding  p r e v i o u s l y used as w e l l as i n d i c a t i n g areas of research  methods  caregiving  that require further attention.  Of importance i s r e c o g n i t i o n t h a t e v a l u a t i o n of the e f f e c t s of group i n t e r v e n t i o n s have been based mostly on p r a c t i t i o n e r observation  of group process and  report questionnaires,  w i t h few  outcome and p a r t i c i p a n t s e l f studies using  measures or q u a l i t a t i v e i n t e r v i e w s & R o s s i t e r , 1989),  The  standardized  ( B i e g e l e t a l . , 1991;  review a l s o i n d i c a t e s t h a t the  Toseland majority  of the s t u d i e s have focused on c a r e g i v e r s of e l d e r l y  relatives  w i t h mental i l l n e s s or Alzheimer's Disease, w i t h a l a c k of a t t e n t i o n t o c a r e g i v e r groups of f r a i l e l d e r l y w i t h o t h e r disabilities. With r e s p e c t t o the e f f e c t s of c a r e g i v i n g such as a n x i e t y , d e p r e s s i o n and more s p e c i f i c a l l y s t r e s s , c r i t i q u e s of the e x i s t i n g r e s e a r c h have r a i s e d q u e s t i o n s as t o the r e s e a r c h e r ' s a b i l i t y t o e v a l u a t e such change without the use of a s t a n d a r d i z e d measure (Toseland & R o s s i t e r , 1989).  In i d e n t i f y i n g the need t o  go beyond c l i n i c a l impressions, r e s e a r c h e r s have a l s o r e i n f o r c e d the v a l u e of u s i n g q u a l i t a t i v e methods i n r e s e a r c h w i t h c a r e g i v e r s , emphasizing  the importance  a s p e c t s of the c a r e g i v i n g experience Toseland & R o s s i t e r , 1989).  of c a p t u r i n g e s s e n t i a l  (Biegel et a l . ,  1991;  As a r e s u l t , r e g a r d i n g f u t u r e  r e s e a r c h d i r e c t i o n s i n c a r e g i v i n g , the l i t e r a t u r e has recommended t h a t designs should i n c l u d e q u a l i t a t i v e and  quantitative  components i n an e f f o r t t o y i e l d a balanced comprehensive p i e c e of work r e a p i n g each r e s p e c t i v e a n a l y t i c advantage (Abel, Barusch,  1991;  McCracken, 1988).  1990;  Given t h i s , t h i s r e s e a r c h  d i f f e r s from p a s t s t u d i e s as the d e s i g n u t i l i z e s  both  q u a n t i t a t i v e and q u a l i t a t i v e m e t h o d s — a s t a n d a r d i z e d raieasure and i n - d e p t h i n t e r v i e w s — and the reasons  f o r t h e i r use w i l l  be  d i s c u s s e d i n Chapter Four - Methodology. Of s i g n i f i c a n c e , o n l y one d e s c r i p t i v e study examining  a  h o s p i t a l - b a s e d f a m i l y c a r e g i v i n g support group has been found (Hamlet & Read, 1990).  Rutchick  (1990) suggests a few  reasons  f o r the l i m i t e d r e s e a r c h on groups i n h e a l t h c a r e s e t t i n g s including  s m a l l sample s i z e , d i f f i c u l t i e s  inherent i n increasing  sample s i z e by s t u d y i n g groups of v a r y i n g p o p u l a t i o n s o r across settings,  and t h e sheer l i m i t e d number of e x i s t i n g groups due t o  the amount o f time r e q u i r e d i n pre-and-post group  activities.  Summary As t h e p o p u l a t i o n c o n t i n u e s challenged  t o age and o l d e r a d u l t s a r e  by d i s a b l i n g d i s e a s e s over a longer p e r i o d of time,  involvement by f a m i l y members w i l l be p i v o t a l t o t h e o v e r a l l well-being  of the e l d e r l y .  The p r o v i s i o n of c a r e i s recognized  as p o t e n t i a l l y s t r e s s f u l f o r c a r e g i v e r s as t h e demands of the c a r e g i v i n g s i t u a t i o n o f t e n t h r e a t e n t o overwhelm c a r e g i v e r s ' coping  resources.  Support groups a r e being used w i t h i n c r e a s i n g  frequency t o help c a r e g i v e r s cope with s t r e s s e s o f c a r e g i v i n g . Group i n t e r v e n t i o n s have t h e p o t e n t i a l t o prevent s t r e s s o r s from overwhelming c a r e g i v e r s by p r o v i d i n g a forum f o r acceptance, u n i v e r s a l i z a t i o n of concerns and f e e l i n g s , and i n s t i l l a t i o n of hope.  Thus, i t i s apparent t h a t while the l i t e r a t u r e seems t o  support with  t h e use of support  groups i n h e a l t h care s e t t i n g s and  f a m i l y c a r e g i v e r s of t h e e l d e r l y , few l i n k s have been made  between f a m i l y c a r e g i v e r s of h o s p i t a l i z e d e l d e r l y and t h e e f f e c t s of h o s p i t a l - b a s e d  support  groups on the experience  of caregiver  stress. In t h e chapter research question  t o f o l l o w , t h e t h e o r e t i c a l framework and  f o r t h e study i s presented.  Chapter Three T h e o r e t i c a l Framework and Research Question  Introduction In t h i s chapter,  the p e r s p e c t i v e through which t h e study i s  examined, t h e t h e o r e t i c a l framework, and t h e r e s e a r c h are  question  presented. T h e o r e t i c a l Framework The  presented  study i s based on the p e r s p e c t i v e  c a r e g i v i n g i s an i n d i v i d u a l i z e d experience  that  which i s i n f l u e n c e d by  many f a c t o r s i n c l u d i n g t h e p e r s o n a l i t i e s of t h e c a r e g i v e r and c a r e r e c e i v e r , t h e i r r e l a t i o n s h i p , t h e nature o f d i s a b i l i t y , supports a v a i l a b l e , age, gender and c u l t u r e t o name a few.  Given  t h i s p e r s p e c t i v e , a c a r e g i v e r s t r e s s - c o p i n g model developed by B i e g e l , S a l e s and S c h u l t z  (1991) has been adopted as t h e b a s i s of  the t h e o r e t i c a l framework f o r t h e study (see F i g u r e 1 ) . The model i n c o r p o r a t e s  f i v e c a t e g o r i e s of v a r i a b l e s  important t o understanding c a r e g i v i n g and i n c l u d e t h e f o l l o w i n g : 1) o b j e c t i v e c o n d i t i o n s conducive t o s t r e s s , 2) i n d i v i d u a l perceptions  o f s t r e s s , 3) short-term  responses t o p e r c e i v e d  s t r e s s , 4) enduring outcomes, and 5) i n d i v i d u a l and s i t u a t i o n a l c o n d i t i o n i n g v a r i a b l e s t h a t a f f e c t t h e r e l a t i o n s among t h e other four sets of f a c t o r s .  Figure  of v a r i a b l e s i n c o r p o r a t e d  1 i l l u s t r a t e s the f i v e  categories  i n t h e model along w i t h examples o f  s p e c i f i c v a r i a b l e s which r e p r e s e n t  each  category.  Figure 1 Caregiver Stress - Coping Model  Conditioning Variables  • Health • Income • Social Support • Satisfaction with Social Contacts • Nature of Prior Relationship • Personality Factors (Perceived Control) • Coping Strategies  TT II Responses to Stress  Conditions Conducive to Stress  • Functional Status (Independence in ADL, daily assistance needed) • Patient Affective State • Other Manifestations of Disability • Nature of Disability Onset • Prognosis • Visibility  • Physiological • Psychological • Behavioral  I  Enduring Outcomes Perceived Stress  • Psychological • Psychological WeU-being • Life Satisfaction • Depression • Physical WeU-being  Source: Biegel, Sales & Schultz, 1991, p.46  The the  u t i l i t y of the model i n understanding key concepts i n  study i s as f o l l o w s .  The  o b j e c t i v e c o n d i t i o n s conducive t o  stress include issues r e l a t e d to chronic i l l n e s s r e c e i v e r s ' f u n c t i o n a l status, prognosis, Perceptions short-term behavioral)  ( i e . care  affective state).  of s t r e s s r e l a t e t o the i n d i v i d u a l c a r e g i v e r .  The  responses t o s t r e s s ( i e . p h y s i o l o g i c , p s y c h o l o g i c , and  enduring outcomes ( i e . p h y s i c a l and  psychologic  w e l l - b e i n g ) address the e f f e c t s of c a r e g i v i n g on the F i n a l l y , the i n d i v i d u a l and  situational variables  caregiver.  (health,  income, s o c i a l support, nature of p r i o r r e l a t i o n s h i p ) a l l i n f l u e n c e the c a r e g i v i n g e x p e r i e n c e . In an attempt t o customize the model and  t o complete the  t h e o r e t i c a l framework f o r the study, s t r e s s theory, systems theory S t r e s s theory  and  group theory  (Lazarus  family  are necessary b u i l d i n g b l o c k s .  & Folkman, 1984)  i s an i n t e g r a l b u i l d i n g  b l o c k as i t complements the c a r e g i v e r s t r e s s - c o p i n g model presented. (Lazarus  The model encompasses components of s t r e s s  theory  & Folkman) h i g h l i g h t i n g the i n t e r a c t i o n s between the  i n d i v i d u a l and  the environment, and the importance of a p p r a i s a l .  As the concept of c a r e g i v i n g i n t h i s study occurs w i t h i n f a m i l y system, f a m i l y systems theory to consider  i s a l s o an important  theory  i n the framework as f a m i l y dimensions i n f l u e n c e  c a r e g i v i n g experience. of f a m i l y systems theory  a  the  Couper (1989) summarized the p r i n c i p l e s as they r e l a t e t o f a m i l y c a r e g i v i n g ,  emphasizing t h a t each f a m i l y member p l a y s a r o l e a c c o r d i n g p r e v i o u s l y e s t a b l i s h e d f a m i l y r u l e s and p a t t e r n s .  Further,  to a  change o f circumstances f o r one member a f f e c t s t h e whole f a m i l y and  f a m i l i e s a l t e r patterns of i n t e r a c t i o n during c r i s i s  t o r e g a i n balance.  A l s o , d i f f e r e n c e s i n boundaries o f  i n d i v i d u a l s , generations interactions.  periods  and f a m i l i e s e x i s t impacting  Thus, a f a m i l y systems p e r s p e c t i v e  members and  provides  i n s i g h t as one acknowledges how these f a c t o r s may i n f l u e n c e s t r e s s and coping w i t h i n t h e c a r e g i v i n g The theory.  experience.  f i n a l p i e c e o f t h e framework i n c l u d e s elements of group The use o f a support  group as an i n t e r v e n t i o n with  c a r e g i v e r s i s based on t h e p e r s p e c t i v e t h a t group dynamics of acceptance, u n i v e r s a l i z a t i o n of f e e l i n g s and concerns, and i n s t i l l a t i o n o f hope help people face and d e a l w i t h emotional r e a c t i o n s  their  (Monahan, Greene & Coleman, 1992; Northen,  1990). F i g u r e 2 i l l u s t r a t e s t h e c a r e g i v e r s t r e s s - c o p i n g model r e f l e c t i n g t h e a d d i t i o n a l components of t h e t h e o r e t i c a l framework.  As t h e focus o f t h e study i s t o examine c a r e g i v e r  s t r e s s , t h e model presented relatedness and  stress.  i s u s e f u l i n organizing the  o f t h e key concepts o f c h r o n i c i l l n e s s , c a r e g i v i n g F u r t h e r , t h e s i g n i f i c a n c e o f f a m i l y dimensions on  c o n d i t i o n i n g v a r i a b l e s and c o n d i t i o n s conducive t o s t r e s s , of one's a p p r a i s a l on t h e experience  of s t r e s s , and o f a group  i n t e r v e n t i o n on enduring outcomes i s h i g h l i g h t e d .  Figure 2 Caregiver Stress - Coping Model Revised  Family Dimensions  Conditioning Variables  • Health •  Income  • Social Support • Satisfaction with Social Contacts • Nature of Prior Relationship • Personahty Factors (Perceived Control) • Coping Strategies  II  i Conditions Conducive to Stress  • • • • • •  Fmctional Status (Independence in ADL, daily assistance needed) Patient Affective State Other Manifestations of Disability Nature of Disability Onset Prognosis ' Visibility  Responses to Stress  1-^  • Physiological • Psychological • Behavioral  Enduring Outcomes Perceived Stress  • Psychological • Psychological Well-being • Life Satisfaction • Depression • Physical Well-beiag  Adapted From: Caregiver Stress - Coping Model Developed by Biegel, Sales & Schultz, 1991  Research Question Based on the l i t e r a t u r e review and t h e o r e t i c a l framework p r e s e n t e d , the study focuses on t h r e e g e n e r a l areas of i n q u i r y  —  f a m i l y c a r e g i v e r s , s t r e s s and group work as an i n t e r v e n t i o n modality.  More s p e c i f i c a l l y , the study addresses the f o l l o w i n g  question:  'How  does a s h o r t - t e r m support group e f f e c t s t r e s s i n  f a m i l y c a r e g i v e r s of h o s p i t a l i z e d  elderly?'.  For the purpose of t h i s study, the key concepts are o p e r a t i o n a l i z e d as f o l l o w s .  'Short-term' r e f e r r e d t o one and  h a l f - h o u r s e s s i o n s o c c u r r i n g weekly f o r f o u r weeks. group' r e f e r r e d t o an aggregate of persons who  one  'Support  have a common  concern and come t o g e t h e r t o support and a i d one another i n c o p i n g w i t h c e r t a i n s t r e s s e s and d i f f i c u l t i e s  (Northen,  1990).  ' S t r e s s ' r e f e r r e d t o "a r e l a t i o n s h i p between the person and the environment  t h a t i s a p p r a i s e d by the person as t a x i n g or  exceeding h i s or her r e s o u r c e s and endangering h i s or her w e l l b e i n g " (Lazarus & Folkman, 1984,  p.21)  and was measured by the  P e r c e i v e d S t r e s s S c a l e (Cohen, Kamarck & Mermelstein, 1983). was  It  f u r t h e r understood by e l i c i t i n g the experiences of c a r e g i v e r s  through i n - d e p t h i n t e r v i e w s . persons  'Family c a r e g i v e r s ' r e f e r r e d t o  (spouses, a d u l t c h i l d r e n , and s i b l i n g s ) who  assistance  provide  ( a f f e c t i v e and i n s t r u m e n t a l t a s k s ) on an ongoing  t o r e l a t i v e s who  basis  are unable t o p r o v i d e f o r themselves as a r e s u l t  of c h r o n i c i l l n e s s .  ' H o s p i t a l i z e d e l d e r l y ' r e f e r r e d t o persons  s i x t y - f i v e y e a r s and o l d e r who geriatric rehabilitation  are c u r r e n t l y i n - p a t i e n t s a t a  hospital.  In the chapter t o f o l l o w , the methodology used t o examine the r e s e a r c h q u e s t i o n f o r the study i s d e t a i l e d .  Chapter  Four  Methodology  Introduction In t h i s chapter, t h e support group program, r e s e a r c h d e s i g n , sampling  procedure,  data c o l l e c t i o n instruments and procedures,  assumptions, l i m i t a t i o n s , e t h i c a l c o n s i d e r a t i o n s and data a n a l y s i s procedures  a r e presented and d i s c u s s e d .  D e s c r i p t i o n o f Support The  Group Program  support group program, 'A Course f o r C a r e g i v e r s ' , was  i n i t i a l l y developed  by two s o c i a l workers a t Holy Family H o s p i t a l  (a g e r i a t r i c r e h a b i l i t a t i o n h o s p i t a l ) and had been d e l i v e r e d twice before.  As o t h e r support groups a r e o f f e r e d i n t h e  community, i t was decided not t o open p a r t i c i p a t i o n t o t h e g e n e r a l p u b l i c , but i n s t e a d t o focus on meeting the needs of f a m i l i e s o f p a t i e n t s of t h e h o s p i t a l .  The group c o n s i s t e d of  f o u r one and one-half hour s e s s i o n s o c c u r r i n g i n c o n s e c u t i v e weeks from 4:30 - 6:00pm.  T h i s time o f day seemed t o accommodate  most of t h e c a r e g i v e r s i n t e r e s t e d i n a t t e n d i n g as many would have j u s t f i n i s h e d v i s i t i n g t h e i r r e l a t i v e and o t h e r s had j u s t f o r a v i s i t on t h e i r way home from work.  arrived  The group met i n a  meeting room a t t h e h o s p i t a l and refreshments  ( c o f f e e / t e a ) were  provided. The  support group was l e d by a s o c i a l worker (who was a l s o  the r e s e a r c h e r f o r t h e study) and f o l l o w e d a s e m i - s t r u c t u r e d  format t o p r o v i d e support and e d u c a t i o n .  Open-ended d i s c u s s i o n s ,  a v i d e o and handouts were used t o address t h e c a r e g i v e r s ' needs and i s s u e s .  A d e s c r i p t i o n of t h e v i d e o and t i t l e s o f t h e  handouts a r e presented i n Appendix A.  The o r g a n i z a t i o n and  content o f t h e group s e s s i o n s f o l l o w s : Week 1 The C a r e g i v e r Role I n t r o d u c t i o n s and a v i d e o a d d r e s s i n g i s s u e s r e l a t e d t o caregiving. Week2 Excuse my unusual b e h a v i o r . . . I t ' s only s t r e s s What i s s t r e s s , how t o r e c o g n i z e i t and s t r a t e g i e s f o r coping. Week 3 When i s i t my time? C a r i n g f o r y o u r s e l f The importance of t a k i n g c a r e of y o u r s e l f and how t o do i t . Week 4 Healthy Communication Communication s t y l e s , t i p s f o r good communication, r e s o u r c e i n f o r m a t i o n , and c l o s u r e . A pre-group meeting was h e l d one week p r i o r t o t h e s t a r t of the support group program.  The pre-group meeting was unique t o  t h i s s e r i e s o f t h e program as i t was mostly the r e s e a r c h study.  f o r t h e purpose o f  The meeting p r o v i d e d t h e o p p o r t u n i t y f o r  f u r t h e r e x p l a n a t i o n of t h e study and t h e requirements of participation.  A l s o , d u r i n g t h i s meeting, consent  s i g n e d and data c o l l e c t i o n procedures  began.  forms were  The meeting  p r o v i d e d t h e o p p o r t u n i t y f o r p a r t i c i p a n t s t o meet one another and t o v o i c e questions/concerns group program.  t h a t they would l i k e addressed  i n the  R a t i o n a l e f o r the Research Method As  s t a t e d i n Chapter Two,  both q u a l i t a t i v e and q u a n t i t a t i v e  r e s e a r c h methods have been used i n t h i s study t o p r o v i d e  a  comprehensive approach t h a t takes more f u l l y i n t o account complex s o c i a l r e a l i t y  (Allen-Meares,  component a f f o r d e d the r e s e a r c h e r  1990).  the  The q u a l i t a t i v e  the o p p o r t u n i t y  to isolate  and  d e f i n e c a t e g o r i e s , and t o look a t p a t t e r n s of i n t e r r e l a t i o n s h i p between the many c a t e g o r i e s  (McCracken, 1988).  I t has  been  argued t h a t q u a l i t a t i v e methods are e s p e c i a l l y a p p r o p r i a t e s t u d y i n g o l d e r f a m i l i e s because one  for  of the most important  c h a r a c t e r i s t i c s of f a m i l i e s i s the interdependence of  their  members, and q u a l i t a t i v e methods are b e t t e r s u i t e d than survey data f o r c o n c e p t u a l i z i n g such interdependence (Matthews, 1993). As w e l l , s i n c e the questions  f o r which data was  somewhat demanding and would p o s s i b l y e l i c i t answers, the more f l e x i b l e net p r o v i d e d was  appropriate  study was  (McCracken).  not one  sought were  l e s s than p r e c i s e  by q u a l i t a t i v e techniques  F u r t h e r , as the purpose of  of g e n e r a l i z a b i l i t y but t h a t of access  respondents' p e r s p e c t i v e , h i g h l i g h t i n g c a t e g o r i e s and of the c a r e g i v i n g experience, r e s e a r c h was  appropriate  component p r o v i d e d  (McCracken).  the o p p o r t u n i t y  (McCracken).  t o the  assumptions  the i n t e n s i v e nature of q u a l i t a t i v e F i n a l l y , the q u a n t i t a t i v e  t o observe a d i f f e r e n t  of the same r e a l i t y , more s p e c i f i c a l l y , p e r c e i v e d family caregivers  the  aspect  s t r e s s of  Research Design The  l e v e l of d e s i g n f o r t h i s study was  d e s c r i p t i v e d e s i g n and was exploratory-descriptive  an  exploratory-  chosen f o r s e v e r a l reasons.  design i s appropriate  An  f o r use w i t h  samples as i t does not attempt t o make g e n e r a l i z a t i o n s Smith, 1981). it  (Reid &  I t i s a l s o w e l l s u i t e d t o q u a l i t a t i v e methods as  i s u s e f u l i n examining impact and/or e f f e c t , and  the e x p e r i e n c e of the p a r t i c i p a n t s .  i n describing  Exploratory-descriptive  d e s i g n s p r o v i d e a knowledge-building f u n c t i o n , information  small  gathering  on c h a r a c t e r i s t i c s of the phenomenon s t u d i e d and  presence of an a s s o c i a t i o n among f a c t o r s (Reid & Smith).  the  While  t h i s type of d e s i g n r e q u i r e s only a modest investment of resources,  i t can  s t i l l help t o inform  groundwork f o r more d e f i n i t i v e s t u d i e s  a c t i o n and/or l a y As  the  study focused on a small sample s i z e , the d e s i g n d e s c r i b e d  was  appropriate.  (Reid & Smith).  As w e l l , the study sought t o examine the e f f e c t s of  group i n t e r v e n t i o n on s t r e s s of f a m i l y c a r e g i v e r s  and  to  gain  knowledge of the c a r e g i v i n g experience through q u a l i t a t i v e interviews  and  a q u a n t i t a t i v e measure.  Sample Procedures P a r t i c i p a n t s f o r the study were r e c r u i t e d from the f i v e bed  i n - p a t i e n t u n i t and  Family H o s p i t a l i n Vancouver. recruitment  the o u t - p a t i e n t  seventy-  department at Holy  P r i o r t o the i n i t i a t i o n  procedures, a p p r o v a l t o conduct the  by the U n i v e r s i t y of B r i t i s h Columbia B e h a v i o r a l  of  study was Sciences  granted  Screening  Committee f o r Research and Other S t u d i e s  Human S u b j e c t s  (see Appendix B) and by Holy Family  Research Committee (see Appendix C ) . h o s p i t a l provided  Hospital  S o c i a l workers at the  names of f a m i l y c a r e g i v e r s p o t e n t i a l l y  i n t e r e s t e d i n p a r t i c i p a t i n g i n the support were i n v i t e d t o p a r t i c i p a t e by l e t t e r r e c e i v e d a follow-up The  Involving  group and  study.  (see Appendix D and E)  Each and  telephone c a l l one week l a t e r .  sample c o n s i s t e d of f a m i l y c a r e g i v e r s of p a t i e n t s of  Holy Family  H o s p i t a l who  group program.  attended  a f o u r week c a r e g i v e r  I n i t i a l l y , the sample was  to include  support  only  c a r e g i v e r s of i n - p a t i e n t s , but as a r e s u l t of the s m a l l sample s i z e , the sample parameters were expanded t o i n c l u d e c a r e g i v e r s of o u t - p a t i e n t s as w e l l . not bound by age, Family  C r i t e r i a f o r i n c l u s i o n i n the study  gender, c u l t u r e or r e l a t i o n s h i p t o the p a t i e n t .  c a r e g i v e r s had t o have attended  the support  t h r e e or more s e s s i o n s of  group program t o p a r t i c i p a t e and only those f a m i l y  c a r e g i v e r s of p a t i e n t s a t the h o s p i t a l who support  was  d i d not a t t e n d  the  group were excluded.  For the purposes of t h i s study, the sample s i z e was participants.  The  small sample s i z e was  eight  chosen as i t a f f o r d e d  g r e a t e r a t t e n t i o n t o each s u b j e c t , a l l o w i n g f o r a more d e t a i l e d examination of themes (Reid & Smith, 1981).  The  sample s i z e  was  a l s o manageable i n terms of budget r e s t r a i n t s and time r e q u i r e d for t r a n s c r i p t i o n . The method of sampling f o r the study was  availability  sampling as the method s e l e c t s i n f o r m a t i o n - r i c h cases f o r i n -  depth study (Patton, 1990). varied  While the sample p o p u l a t i o n was  ( i e . respondents were of d i f f e r e n t age and  backgrounds), the sample type was  cultural  homogenous as a l l the  p a r t i c i p a n t s were s i m i l a r w i t h r e s p e c t t o the p r e s e n t i n g problem and having had attended the support group.  Instruments The instruments used i n the study i n c l u d e d a s t a n d a r d i z e d s t r e s s s c a l e - the P e r c e i v e d S t r e s s S c a l e (see Appendix  F),  an  i n - d e p t h i n t e r v i e w u s i n g a s e m i - s t r u c t u r e d i n t e r v i e w guide (see Appendix  G), a Demographic P r o f i l e  (see Appendix  H), and a  c a r e g i v e r support group e v a l u a t i o n form (see Appendix I ) . The P e r c e i v e d S t r e s s S c a l e The P e r c e i v e d S t r e s s S c a l e (PSS) was  designed t o measure the  degree t o which s i t u a t i o n s i n one's l i f e a r e a p p r a i s e d as stressful  (Cohen e t a l . ,  1983).  I t was  s e l e c t e d because i t i s  s e n s i t i v e t o c h r o n i c s t r e s s d e r i v i n g from ongoing circumstances and t o s t r e s s from e x p e c t a t i o n s c o n c e r n i n g f u t u r e events  (Cohen  e t a l . ) , both of which are c h a r a c t e r i s t i c s of the c a r e g i v i n g experience  (Biegel et a l . ,  1991).  As w e l l , the items on the  s c a l e make r e f e r e n c e t o the time frame of one month, and i n examining the e f f e c t s of the group on the c a r e g i v e r , the time frame of the s c a l e i s congruent w i t h the l e n g t h of the support group program.  The PSS was  designed t o be used w i t h samples  respondents who  have a j u n i o r high s c h o o l e d u c a t i o n , having easy  t o understand items and response a l t e r n a t i v e s  (Cohen e t a l . ) .  of  Unlike other  s c a l e s used i n c a r e g i v i n g r e s e a r c h , t h e PSS i s not  s p e c i f i c t o any p a r t i c u l a r p o p u l a t i o n group ( i e . age, gender o r relationship).  As the PSS has been proven t o possess s u b s t a n t i a l  r e l i a b i l i t y and v a l i d i t y  (Cohen e t a l . ) , t h e s c a l e i s b e l i e v e d t o  add r e l i a b i l i t y and v a l i d i t y t o the study. The support  PSS was p r e - t e s t e d w i t h c a r e g i v e r s who attended  a  group p r i o r t o t h e study and i t was found t o be easy t o  administer  and complete, y i e l d i n g i n t e r e s t i n g i n f o r m a t i o n  c o u l d be c o r r e l a t e d t o t h e c a r e g i v e r ' s s i t u a t i o n .  that  Another  c o n s i d e r a t i o n t h a t r e s u l t e d from p r e - t e s t i n g t h e PSS was the p o t e n t i a l f o r d i f f i c u l t i e s i n completing language b a r r i e r s . completing PSS,  the s c a l e due t o  A d e c i s i o n was made t o o f f e r a s s i s t a n c e i n  the w r i t t e n requirements of the study  demographic p r o f i l e ) t o a l l respondents.  administered  (consent  form,  The PSS was  d u r i n g a pre-group meeting one week p r i o r t o t h e  s t a r t o f t h e support  group and again d u r i n g the f i n a l s e s s i o n of  the group program. Interviews In-depth i n t e r v i e w s o c c u r r e d  i n d i v i d u a l l y with t h e group  members between 2 and 13 days a f t e r t h e f i n a l group meeting.  The  i n t e r v i e w s were conducted by t h e r e s e a r c h e r who, as s t a t e d e a r l i e r , was the group l e a d e r and a t r a i n e d s o c i a l worker. A l l of t h e i n t e r v i e w s were conducted by the same r e s e a r c h e r . Interviews  allowed  t h e i r experience  the c a r e g i v e r s the o p p o r t u n i t y  t o express  i n t h e i r terms and informed t h e r e s e a r c h with a  p i c t u r e o f t h e c a r e g i v e r ' s p e r s p e c t i v e and complex s i t u a t i o n t h a t  i s beyond responses 1981).  on a s c a l e d q u e s t i o n n a i r e (Reid & Smith,  Interviews w i t h the c a r e g i v e r s a l s o a f f o r d e d the  r e s e a r c h e r the o p p o r t u n i t y t o o b t a i n c l a r i t y of i s s u e s as w e l l as address content and process i s s u e s (George, An i n t e r v i e w guide was it  1990).  u t i l i z e d because of the  flexibility  o f f e r s i n a l t e r i n g the order and wording of q u e s t i o n s i n  accordance 1990).  w i t h the p a r t i c i p a n t s and t h e i r experience  (Patton,  The q u e s t i o n s i n the i n t e r v i e w guide were developed  to  examine the l i n k s between the respondents' c a r e g i v i n g experience, p e r c e i v e d s t r e s s and the e f f e c t s of the support group program. More s p e c i f i c a l l y , the q u e s t i o n s used were designed t o  elicit  i n f o r m a t i o n t h a t r e l a t e d both t o the t h e o r e t i c a l framework p r e s e n t e d e a r l i e r , h i g h l i g h t i n g the c a r e g i v i n g s t r e s s - c o p i n g model (Chapter T h r e e ) , and t o the e f f e c t s of p a r t i c i p a t i o n i n the support group program. c a r e g i v e r s who  The  i n t e r v i e w guide was  pre-tested with  had attended a p r e v i o u s support group as w e l l as  w i t h c o l l e a g u e s i n the f i e l d .  T h i s process p r o v i d e d an  o p p o r t u n i t y t o observe and r e c e i v e v e r b a l suggestions and  non  v e r b a l c l u e s , many of which were i n c o r p o r a t e d , adding t o the soundness of the  study.  From the i n i t i a l d r a f t t o i t s f i n a l form, the i n t e r v i e w guide undenvent changes i n order t o flow more smoothly and t o more e f f e c t i v e l y e l i c i t research question. to  the i n f o r m a t i o n necessary t o address  the  Open-ended q u e s t i o n s are necessary i n order  a c q u i r e the d e t a i l e d data t h a t permit i n t e r p r e t i v e  (Hutchinson & Skodol-Wilson,  1992).  analysis  The i n t e r v i e w guide began  w i t h g e n e r a l open-ended, non-threatening q u e s t i o n s about the respondents' c a r e g i v i n g s i t u a t i o n .  The q u e s t i o n s then focused on  reasons f o r a t t e n d i n g the support group and ways i n which the group e f f e c t e d them.  The i n t e r v i e w guide was  l i m i t e d t o four  main q u e s t i o n s i n r e c o g n i t i o n t h a t p a r t i c i p a t i n g i n t h i s type of an i n t e r v i e w has the p o t e n t i a l t o be e m o t i o n a l l y e x h a u s t i n g . w e l l , the guide was  developed w i t h an e f f o r t t o be c o n s i d e r a t e of  the respondents' competing restrictions.  As  r e s p o n s i b i l i t i e s and r e s u l t i n g  time  The q u e s t i o n s as w e l l as the probes were worded  u s i n g language of everyday  speech.  Demographic P r o f i l e I n f o r m a t i o n The demographic p r o f i l e form was  designed by the r e s e a r c h e r  t o c a p t u r e r e l e v a n t demographic and c a r e g i v i n g i n f o r m a t i o n . was  completed d u r i n g the pre-group  It  session.  'A Course f o r C a r e g i v e r s ' E v a l u a t i o n Form The e v a l u a t i o n form was Barusch  adapted from a format suggested by  (1991) i n October, 1993  leader/researcher.  The form was  by the support  group  accepted f o r use by the S o c i a l  Work Department a t Holy Family H o s p i t a l and had been used s u c c e s s f u l l y p r i o r t o i t s use i n the r e s e a r c h study.  The  q u e s t i o n s on the e v a l u a t i o n form were not designed t o address the r e s e a r c h q u e s t i o n d i r e c t l y but d i d i n v e s t i g a t e the g e n e r a l areas of i n q u i r y i n a n o n - d i r e c t i v e  fashion.  C r e d i b i l i t y and Soundness In r e s e a r c h , each phase of the p r o j e c t a f f e c t s and soundness of the f i n a l product.  credibility  The r e l i a b i l i t y and  validity  of the PSS  was  addressed p r e v i o u s l y .  With r e s p e c t t o  i n t e r v i e w as a measure, c r e d i b i l i t y was audiotaping bias.  attended  the i n t e r v i e w s thereby r e d u c i n g  the  t o by  interviewer selection  A l s o , the use of the same i n t e r v i e w e r i n c r e a s e d  the  l i k e l i h o o d of a s i m i l a r p r e s e n t a t i o n of questions  t o each  respondent.  addressed by  Soundness of the i n t e r v i e w guide was  p r e - t e s t i n g the i n t e r v i e w q u e s t i o n s relevance 1992).  f o r flow, wording  and  t o the r e s e a r c h purpose (Hutchinson & Skodol-Wilson,  F u r t h e r , the i n t e r v i e w e r had  u s i n g non-leading,  good i n t e r v i e w i n g  open-ended q u e s t i o n s  skills,  which f a c i l i t a t e d  the  d e t a i l e d data necessary f o r i n t e r p r e t a t i v e a n a l y s i s (Hutchinson & Skodol-Wilson).  The  i n t e r v i e w e r was  f l e x i b l e , pursuing  respondent's l e a d and c l a r i f y i n g meaning throughout.  the  The  timing  ( w i t h i n two weeks f o l l o w i n g the group c e s s a t i o n and a t a c o n v e n i e n t time f o r the respondent) and office  setting (in a quiet  i n the h o s p i t a l where the group was  i n t e r v i e w s remained constant c o n t r i b u t e d t o soundness.  held) of  the  f o r a l l the respondents and  F i n a l l y , the audiotaped  thus  interviews  were t r a n s c r i b e d p r i m a r i l y by the r e s e a r c h e r which c o n t r i b u t e d new  i d e a s , s t i m u l a t e d the i n t e r v i e w e r ' s p e r s o n a l  was  u s e f u l i n monitoring  bias  (Hutchinson &  f e e l i n g s , and  Skodol-Wilson).  In f u r t h e r c o n s i d e r i n g the c r e d i b i l i t y , soundness  and  g e n e r a l i z a b i l i t y of the study, i t must be openly r e c o g n i s e d q u a l i t a t i v e s t u d i e s by v i r t u e of t h e i r nature cannot r e p l i c a t e d because the world and ( M a r s h a l l & Rossman, 1989).  be  i n d i v i d u a l ' s experiences  However, making e x p l i c i t  that  the  change  parameters o f t h e study and t h e a p p l i c a b i l i t y o f t h e study as p r e v i o u s l y d e t a i l e d c o n t r i b u t e d t o c r e d i b i l i t y and soundness of the study.  As w e l l , t h e p r e v i o u s l y e x p l i c i t documentation of the  p e r s p e c t i v e through which t h e study was conducted as w e l l as the t h e o r e t i c a l framework i t i s based upon enhanced c r e d i b i l i t y and soundness.  A l s o , a j o u r n a l d e t a i l i n g t h e r e s e a r c h process was  maintained i n o r d e r t o a l l o w o t h e r s t o i n s p e c t procedures used and d e c i s i o n s made ( M a r s h a l l & Rossman).  The use o f i n t e r v i e w  d a t a as evidence o f t h e r e s e a r c h e r ' s i n f e r e n c e s and i n documenting a n a l y t i c c o n s t r u c t s t h a t appear l a t e r i n Chapter F i v e a l s o add t o t h e c r e d i b i l i t y  ( M a r s h a l l & Rossman).  Data C o l l e c t i o n Procedures The d a t a was c o l l e c t e d on t h r e e o c c a s i o n s d u r i n g t h e study: 1.  Data was f i r s t c o l l e c t e d as t h e pre-group meeting was h e l d a t  the h o s p i t a l one week p r i o r t o t h e s t a r t of t h e support group program.  The meeting i n v o l v e d d i s c u s s i o n s about t h e group  program and t h e study as w e l l as completion of a consent form (see Appendix J ) , t h e PSS, and a demographic participant.  p r o f i l e by each  While a s s i s t a n c e i n completing t h e w r i t t e n  requirements was o f f e r e d t o a l l respondents i n an e f f o r t t o a v o i d d i f f i c u l t i e s a r i s i n g from language b a r r i e r s , no a s s i s t a n c e was requested. 2.  Data was next c o l l e c t e d d u r i n g t h e l a s t  15 minutes o f the  f i n a l s e s s i o n of t h e support group program as p a r t i c i p a n t s once a g a i n completed t h e PSS as w e l l as t h e e v a l u a t i o n form.  3.  F i n a l l y , w i t h i n two weeks o f t h e completion  of t h e group,  i n d i v i d u a l i n t e r v i e w s with the p a r t i c i p a n t s were arranged conducted.  and  The r e s e a r c h e r / i n t e r v i e w e r conducted a l l the  i n t e r v i e w s u s i n g the i n t e r v i e w guide.  The i n t e r v i e w s began with  i n f o r m a l c o n v e r s a t i o n and proceeded t o review the purpose of the study,  i s s u e s of c o n f i d e n t i a l i t y and e t h i c a l c o n s i d e r a t i o n s .  The  f i r s t q u e s t i o n i n the guide was asked and an e f f o r t was made t o ask the f o l l o w i n g questions  i n t h e same order f o r each i n t e r v i e w .  However, a d d i t i o n a l questions were asked i f r e l e v a n t t o the study. The i n t e r v i e w s ranged i n l e n g t h from 45-60 minutes. were audiotaped  They  and l a t e r t r a n s c r i b e d f o r purposes of a n a l y s i s  (see Appendix K f o r an example of an i n t e r v i e w t r a n s c r i p t ) .  Assumptions I t was assumed t h a t a l l respondents were a b l e t o r e f l e c t and comment on t h e i r c a r e g i v i n g experience.  I t was a l s o assumed t h a t  data emerging from the PSS, demographic p r o f i l e s , i n t e r v i e w s and e v a l u a t i o n forms was an honest and accurate r e p r e s e n t a t i o n of the respondents'  experience.  Limitations The 1.  primary l i m i t a t i o n s of t h i s study were as f o l l o w s : One must r e c o g n i z e t h a t the broad i n c l u s i o n of  respondents ( d i f f e r e n c e s i n age, c u l t u r a l background, r e l a t i o n s h i p t o the p a t i e n t ) may mask the r e v e l a t i o n of themes p a r t i c u l a r t o c e r t a i n subgroups ( Z a r i t & Toseland,  1989).  More  s t r i c t i n c l u s i o n c r i t e r i a may  have served t o i n c r e a s e  homogeneity of the sample, but at the same time may reduced the number of a p p r o p r i a t e  the  have f u r t h e r  respondents (Holden, Rosenberg,  Barker, Tuhrim & Brenner, 1993). 2.  As p a r t i c i p a t i o n i n the support  voluntary  study  was  ( s e l f - s e l e c t e d ) , both the l e a s t s t r e s s e d and the most  s e v e r e l y s t r e s s e d may 1994).  group and  Caregivers  be underrepresented ( M c C a l l i o n et a l . ,  i n s e l f - s e l e c t e d samples tend t o be concerned  enough about c a r e g i v i n g t o seek support,  but are not so i n v o l v e d  i n c a r e g i v i n g t h a t they are unable t o get out t o p a r t i c i p a t e i n a r e s e a r c h or support Excessive may  group program (Malonebeach & Z a r i t ,  and competing time demands a s s o c i a t e d with  1991).  caregiving  c e r t a i n l y i n f l u e n c e the s e l f - s e l e c t i o n sample process  K i e c o l t - G l a s e r , 1990). p a r t i c i p a t e may  Therefore,  c a r e g i v e r s who  be d i f f e r e n t from those who  (Dura &  chose t o  d i d not  (Barusch,  1991). 3.  In q u a l i t a t i v e r e s e a r c h , the i n t e r v i e w e r / i n v e s t i g a t o r  serves as the instrument i n the c o l l e c t i o n and  a n a l y s i s of  data,  u s i n g a broad range of h i s / h e r own  imagination  and  intellect  experience,  (McCracken, 1988). However, the i n t e r v i e w e r must ensure  t h a t the testimony be e l i c i t e d i n an as u n o b t r u s i v e , manner as p o s s i b l e i n order t o capture  nondirective  the c a t e g o r i e s and  of the respondent and not t h a t of the i n t e r v i e w e r ' s own categories  (McCracken).  The  logic  i n t e r v i e w e r f o r the study was  t r a i n e d s o c i a l worker, s k i l l e d i n i n t e r v i e w i n g educated i n q u a l i t a t i v e r e s e a r c h  logic and  a  techniques,  interviewing yet  inexperienced  i n conducting q u a l i t a t i v e research interviews. As one s t r a t e g y t o a t t e n d t o t h i s type o f l i m i t a t i o n , Whyte (1982) suggests e v a l u a t i n g t h e degree o f d i r e c t i v e n e s s o f a question/statement  made by t h e i n t e r v i e w e r by examining  c o n t e x t o f what immediately The  s c a l e ranges  w i t h responses huh,  preceded  i t during the interview.  from low t o h i g h l y d i r e c t i v e responses  t h a t encourage t h e respondent  beginning  t o continue  a nod o f t h e head), r e f l e c t i v e statements,  remark made by t h e respondent,  i t i n the  ( i e . Uh-  p r o b i n g the l a s t  probing an i d e a p r e c e d i n g the l a s t  remark, p r o b i n g an i d e a expressed i n an e a r l i e r p a r t o f t h e i n t e r v i e w , and i n t r o d u c i n g a new t o p i c .  The i n t e r v i e w e r i n t h i s  study examined a segment o f each i n t e r v i e w p r i o r t o conducting the next i n t e r v i e w i n order t o monitor  and ensure t h a t t h e  testimony was e l i c i t e d i n a u n o b t r u s i v e and n o n d i r e c t i v e manner. 4.  An important c o n s i d e r a t i o n i n data c o l l e c t i o n was t h e  s i g n i f i c a n c e of the p r a c t i t i o n e r  (the support group l e a d e r ) and  the r e s e a r c h e r being t h e same person.  Research  outcomes may be  e f f e c t e d as a r e s u l t of t h e p r a c t i t i o n e r / r e s e a r c h e r e x p e r i e n c i n g role conflict 1993).  ( P r o f f i t t , Byrne, Namei, King, Schmidt & B r o t t ,  S o c i a l workers, who a r e t r a d i t i o n a l l y t r a i n e d t o p r o v i d e  s e r v i c e t o consumers i n response  t o i d e n t i f i e d needs, may  s t r u g g l e w i t h assuming t h e r o l e o f h e l p e r d u r i n g t h e r e s e a r c h interview.  Adhering t o t h e r i g o r s of s c i e n t i f i c methodology has  l e d t o a s e p a r a t i o n o f t h e r o l e s o f p r a c t i t i o n e r and r e s e a r c h e r , o f t e n e x a c e r b a t i n g e x i s t i n g c o n f l i c t s i n t h e r e s e a r c h endeavor (Robinson  & Thorne, 1988).  However, support does e x i s t f o r an  a l t e r n a t i v e approach, t h a t o f b l e n d i n g o f the p r a c t i t i o n e r and r e s e a r c h e r r o l e s as the r o l e s a r e so c l o s e l y i n t e r t w i n e d  that  each r o l e i n f a c t s t i m u l a t e s t h e o t h e r (Robinson Se Thorne) . I t has  been s t a t e d  that  such an approach can be more e f f i c i e n t and  e f f e c t i v e as the p r a c t i t i o n e r o f t e n  has d i r e c t access t o  respondents and i s f a m i l i a r w i t h the problem area ( K i l p a t r i c k & L o c k h a r t , 1991). potential  The r e s e a r c h e r i n t h i s study attended t o t h e  f o r r o l e c o n f l i c t by c a r e f u l l y s c r u t i n i z i n g the  i n t e r v i e w e r ' s r o l e i n each i n t e r v i e w and by d e b r i e f i n g w i t h a c o l l e a g u e b e f o r e p r e c e d i n g w i t h t h e next i n t e r v i e w . Another i s s u e as a r e s u l t of t h e blended r o l e was the r i s k of b i a s .  The r i s k was present as respondents who l i k e d the group  l e a d e r a r e more l i k e l y t o r e p o r t  p o s i t i v e l y w i t h r e f e r e n c e t o the  group when t h e group l e a d e r i s t h e one a s k i n g the q u e s t i o n s ( B i e g e l e t a l . , 1991).  To c o n t r o l  f o r the p o t e n t i a l b i a s , t h e  i n - d e p t h i n t e r v i e w s o c c u r r e d a f t e r the group was completed.  As  w e l l , respondents were asked t o respond h o n e s t l y as t h e i r i n f o r m a t i o n was t o be used i n improving the program and f u t u r e planning f o r caregivers. 5.  The s i z e of the sample was s m a l l by v i r t u e of the study  being based on one s e r i e s o f t h e four week support group program, and  a maximum of 14 i n d i v i d u a l s p a r t i c i p a t e i n the program a t one  time.  The sample s i z e was a l s o l i m i t e d by the number of  p a r t i c i p a n t s who attended t h r e e o r more group s e s s i o n s .  However,  a l l who attended the program d i d p a r t i c i p a t e i n the study. 6.  I t must be accepted t h a t the f i n d i n g s  of t h e study a r e  c o n t e x t bound due i n p a r t t o the s m a l l sample s i z e q u a l i t a t i v e method used.  The  and  f i n d i n g s would be most a p p l i c a b l e  to other g e r i a t r i c r e h a b i l i t a t i o n hospital-based caregiver support group programs.  The themes presented i n the f i n d i n g s  may  be more w i d e l y a p p l i c a b l e t o s i m i l a r community based or s e l f - h e l p c a r e g i v e r support groups. cannot be determined  However, the extent of a p p l i c a b i l i t y  by t h i s  study.  E t h i c a l Considerations P e r m i s s i o n t o conduct  t h i s study was  granted by the  U n i v e r s i t y of B r i t i s h Columbia B e h a v i o r a l S c i e n c e s Screening Committee f o r Research (see Appendix B ) .  and Other S t u d i e s I n v o l v i n g Human Subjects  P e r m i s s i o n was  a l s o granted from the  Research  Committee a t Holy Family H o s p i t a l (see Appendix C ) . Each p o t e n t i a l respondent  of the study r e c e i v e d an  i n f o r m a t i o n l e t t e r d e t a i l i n g the purpose of the study and nature and extent of the involvement  requested.  The  the  letter  also  s t a t e d t h a t they were under no o b l i g a t i o n t o p a r t i c i p a t e and t h a t a d e c i s i o n not t o p a r t i c i p a t e or t o withdraw a t any time would not a f f e c t the r e c e i p t of p r e s e n t or f u t u r e s e r v i c e . During the pre-group consent  meeting, respondents  completed  form which again e x p l i c i t l y s t a t e d what was  the  r e q u i r e d of  them, r e i n f o r c e d t h a t i n f o r m a t i o n would be h e l d i n c o n f i d e n c e by the r e s e a r c h e r , t h a t i d e n t i f y i n g i n f o r m a t i o n would be  omitted,  and ensured t h a t t h e i r r e c e i p t of s e r v i c e from the h o s p i t a l would i n no way  be a f f e c t e d by t h e i r involvement  i n the study.  Prior  to  the i n t e r v i e w , these p o i n t s were repeated as w e l l as  c l a r i f y i n g each respondents'  r i g h t t o d e c l i n e any answer.  Respondents were asked t o r e c o r d t h e i r b i r t h dates as an i d e n t i f i c a t i o n code on the PSS  and demographic p r o f i l e , and  label  the audiotape i n the same manner f o l l o w i n g the i n t e r v i e w t o ensure anonymity y e t p r o v i d e a method t o l i n k the two measures. Upon completion of the i n t e r v i e w , the a v a i l a b i l i t y of follow-up s e r v i c e s was  presented i n the form of p r o v i s i o n of the  r e s e a r c h e r ' s telephone number, o f f e r i n g of a subsequent v i s i t  and  appropriate r e f e r r a l s .  Data A n a l y s i s The method of data a n a l y s i s employed both q u a n t i t a t i v e q u a l i t a t i v e methods. determine  F i r s t , c a l c u l a t i o n s were performed  and  to  changes i n the respondents' p e r c e i v e d s t r e s s s c o r e .  The d a t a from the i n t e r v i e w s was  then used t o add breadth  depth t o the q u a n t i t a t i v e a n a l y s i s of p e r c e i v e d s t r e s s . i n t e n t of the q u a l i t a t i v e a n a l y s i s was  and The  t o c o n s t r u c t an exhaustive  d e s c r i p t i o n of the major themes t h a t emerged from the i n t e r v i e w s . The  i n t e r v i e w data was  o r g a n i z e d and s o r t e d u s i n g a m o d i f i e d  grounded t h e o r y approach ( S t r a u s , 1989).  The  tape-recorded  i n t e r v i e w s were f i r s t t r a n s c r i b e d and each tape l i s t e n e d t o i n d i v i d u a l l y p r i o r t o the c o d i n g process t o capture a f e e l i n g f o r the respondents'  experience.  phrases and/or statements  Using l i n e by l i n e a n a l y s i s , words,  t h a t p e r t a i n e d t o the r e s e a r c h q u e s t i o n  were u n d e r l i n e d and e x t r a c t e d from the t r a n s c r i p t s as  elements.  The elements were w r i t t e n u s i n g the respondents' r i g h t hand margin of t h e t r a n s c r i p t .  language i n the  The elements were then  c l u s t e r e d t o form c o n c e p t u a l themes, r e d u c i n g the number of u n i t s t o be worked w i t h .  Care was taken t o s t a y grounded i n the  o r i g i n a l t r a n s c r i p t s by u s i n g verbatim q u o t a t i o n s i n the a n a l y s i s process.  Memos were a l s o used by r e c o r d i n g i d e a s t h a t ceime t o  mind d u r i n g the coding process i n the l e f t hand margin of t h e transcript. Appendix K ) .  A coded t r a n s c r i p t i s p r o v i d e d as an example (see Upon completion  back t o the statements  of coding, themes were r e f e r r e d  i n the t r a n s c r i p t s .  Themes which were  unique t o a p a r t i c u l a r i n t e r v i e w were not i g n o r e d but were recorded separately.  F i n a l l y , the themes were o r g a n i z e d t o  p r e s e n t an o v e r a l l understanding each respondent's  of t h e d a t a .  An examination of  PSS score, demographic p r o f i l e and c a r e g i v i n g  s i t u a t i o n was conducted  i n an attempt t o i d e n t i f y connections and  c o n t r i b u t e t o a d d r e s s i n g the r e s e a r c h q u e s t i o n . the e v a l u a t i o n forms were reviewed,  Information  from  c o l l a t e d and used t o i d e n t i f y  s i m i l a r i t i e s / d i f f e r e n c e s between what respondents wrote and what was l a t e r s t a t e d i n the i n t e r v i e w s .  as a group  Summary In t h i s chapter, the support group program t h a t was focus of the study was  the  d e s c r i b e d as w e l l as the r a t i o n a l e f o r use  of q u a l i t a t i v e and q u a n t i t a t i v e r e s e a r c h methods t o conduct study.  The  l e v e l of d e s i g n f o r the study was  d e s c r i p t i v e design.  The  the  an e x p l o r a t o r y -  sample of f a m i l y c a r e g i v e r s was  r e c r u i t e d from Holy Family H o s p i t a l u s i n g a method of p u r p o s e f u l sampling.  The instruments used t o c o l l e c t data i n c l u d e d the  a demographic p r o f i l e , an i n - d e p t h i n t e r v i e w u s i n g a  PSS,  semi-  s t r u c t u r e d i n t e r v i e w guide, and a group e v a l u a t i o n form. C a l c u l a t i o n s were performed determine  on the data obtained from the PSS  to  changes i n the respondents' p e r c e i v e d s t r e s s s c o r e .  A  m o d i f i e d grounded t h e o r y approach was a n a l y s i s of the i n t e r v i e w d a t a . was  granted by the Research  used i n the q u a l i t a t i v e  P e r m i s s i o n t o conduct  the study  Committee a t Holy Family H o s p i t a l and  the U n i v e r s i t y of B r i t i s h Columbia B e h a v i o u r a l S c i e n c e s Screening Committee f o r Research Subjects.  and Other S t u d i e s i n v o l v i n g Human  E t h i c a l c o n s i d e r a t i o n s were attended t o throughout  study. In the f o l l o w i n g c h a p t e r , the f i n d i n g s of the study are presented.  the  Chapter F i v e Presentation of Findings  Introduction In t h i s c h a p t e r , the sociodemographic sample w i l l be presented and d i s c u s s e d .  c h a r a c t e r i s t i c s of the  The f i n d i n g s from the  i n - d e p t h i n t e r v i e w s , the PSS and t h e e v a l u a t i o n form w i l l then be presented.  Sociodemographic C h a r a c t e r i s t i c s o f the Sample The  sociodemographic  d e t a i l e d i n Table 1.  c h a r a c t e r i s t i c s o f t h e respondents are  The respondents  y e a r s , were predominately  ranged  i n age from 52 t o 73  female and a l l were m a r r i e d .  The  r e l a t i o n s h i p t o the c a r e r e c e i v e r was e i t h e r as a spouse o r a d u l t child. care.  Three out o f e i g h t respondents Only one respondent  had been p r o v i d i n g 24-hour  h e l d a job a t the same time.  The c a r e r e c e i v e r s were between the ages of 65 and 87 years w i t h t h e e x c e p t i o n of one c a r e r e c e i v e r being 55 years o l d . of  t h e c a r e r e c e i v e r s were female and h a l f were male.  m a j o r i t y were m a r r i e d and the remaining were widowed.  Half  The Most o f  the c a r e r e c e i v e r s had s u f f e r e d s t r o k e s , w i t h o n l y two experiencing other d i s a b i l i t i e s arthritis).  ( h i p surgery r e l a t e d t o  F i v e o f the c a r e r e c e i v e r s were c u r r e n t l y i n  h o s p i t a l and t h r e e were o u t p a t i e n t s of Holy Family H o s p i t a l . sociodemographic  c h a r a c t e r i s t i c s o f the respondents  r e c e i v e r s a r e summarized i n T a b l e 2.  and  care  The  Caregiver Characteristics Respondent *1  Respondent  Age  60  58  Gender  Female  Female  Married  Married  R e l a t i o n t o Care R e c e i v e r  Spouse  Adult  L e n g t h o f Time as a C a r e g i v e r  5 months  6 years  No. o f Hours/Day P r o v i d i n g Care  2.5 hours  1 hour  Employment s t a t u s  Not employed  Not employed  Age  65  86  Gender  Male  Female  Married  Widowed  Type o f D i s a b i l i t y  Stroke  Hip  Connection t o H o s p i t a l  Inpatient  Inpatient  Marital  Status  Care R e c e i v e r  Marital  S2_  Child  Characteristics  Status  surgery  Caregiver  characteristics  Respondent t 3 _  Respondent #4  Age  66  66  Gender  Female  Female  Married  Married  Spouse  Adult  Length o f Time as a C a r e g i v e r  4 months  3 months  No. o f Hours/Day P r o v i d i n g Care  5-6  24 hours  Employment  Retired  Retired  Age  68  87  Gender  Male  Female  Married  widowed  Type o f D i s a b i l i t y  stroke  stroke  Connection t o H o s p i t a l  Inpatient  Outpatient  Marital  status  R e l a t i o n t o Care  Receiver  Status  hours  Child  Care R e c e i v e r C h a r a c t e r i s t i c s  Marital  status  caregiver  Characteristics Respondent *5  Respondent  Age  73  64  Gender  Male  Female  Married  Married  R e l a t i o n t o Care R e c e i v e r  Spouse  Spouse  Length o f Time as a C a r e g i v e r  1 month  6 months  No. o f Hours/Day P r o v i d i n g Care  8 hours  24 hours  Employment s t a t u s  Retired  Retired  Age  72  70  Gender  Female  Male  Married  Married  Type o f D i s a b i l i t y  stroke  stroke  Connection to H o s p i t a l  Inpatient  outpatient  Marital  Status  Care R e c e i v e r  Marital  16  Characteristics  Status  Caregiver  characteristics Respondent #7  Respondent |8_  Age  52  55  Gender  Female  Female  Marital status  Married  Married  R e l a t i o n t o Care R e c e i v e r  Adult c h i l d  Spouse  L e n g t h o f Time as a C a r e g i v e r  3 months  1 year  No. o f Hours/Day P r o v i d i n g Care  3 hours  24 hours  Employment S t a t u s  F u l l time  Not employed  Age  72  55  Gender  Female  Male  Marital status  Widowed  Married  Type o f D i s a b i l i t y  Hip  stroke  Connection t o H o s p i t a l  Inpatient  Care R e c e i v e r  Characteristics  surgery  Outpatient  Summary o f Sociodemographic C h a r a c t e r i s t i c s o f t h e Sample  Caregivers Age  52-73 y e a r s o f age  Gender  7 females  Marital status  Married  R e l a t i o n t o Care R e c e i v e r  5 spouses and 3 a d u l t c h i l d r e n  Length  7 p r o v i d i n g c a r e > s i x months 1 providing care f o r 6 years  o f time as a C a r e g i v e r  and 1 male  No. o f Hours/Day P r o v i d i n g Care  1 hour t o 24 hour c a r e 3 p r o v i d e 24 hour c a r e  Employment S t a t u s  4 retired 3 unemployed 1 employed f u l l - t i m e  Care R e c e i v e r s Age  55-87 years o f age  Gender  4 females  Marital status  5 m a r r i e d and 3 widowed  Type o f D i s a b i l i t y  6 s t r o k e and 2 h i p s u r g e r y  Connection t o H o s p i t a l  5 i n p a t i e n t and 3 o u t p a t i e n t  and 4 males  I t i s i n t e r e s t i n g t o note t h a t f o r care r e c e i v e r s who m a r r i e d , t h e i r spouse was r e c e i v e r s who  i n each of these cases,  care  primary  the c a r e g i v e r was  a  T h i s sample a c c u r a t e l y r e f l e c t s the l i t e r a t u r e w i t h  respect to describing family caregivers 1985;  For  were widowed, a d u l t c h i l d r e n were the  c a r e g i v e r s and daughter.  the primary c a r e g i v e r .  were  Stoller,  (Brody, 1990;  Horowitz,  1983).  Q u a l i t a t i v e A n a l y s i s of Interviews From a n a l y s i s of the i n t e r v i e w data, themes emerged  and  y i e l d e d s i x stages which c o n t r i b u t e t o understanding of  the  c a r e g i v i n g experience.  the  natural progression experiences.  The  The  order of the stages r e f l e c t  respondents took i n s h a r i n g t h e i r  stages and  p r e s e n t e d i n Table 3.  caregiving  a s s o c i a t e d major themes are  For c l a r i t y , each stage i s more f u l l y  d e s c r i b e d by h i g h l i g h t i n g the major themes and comprise each stage and by u s i n g excerpts  elements t h a t  from the i n t e r v i e w data  as examples. STAGE;  C o n t r i b u t i n g F a c t o r s To C a r e g i v e r  Throughout the i n t e r v i e w and regarding  Stress  i n response t o i n q u i r i e s  d i f f i c u l t p a r t s of the c a r e g i v i n g job, s e v e r a l themes  s u r f a c e d as c o n t r i b u t i n g f a c t o r s t o s t r e s s i n c l u d i n g care r e c e i v e r s ' b e h a v i o r , care r e c e i v e r s ' d i s a b i l i t y and continuous c a r e , p r o v i s i o n of p h y s i c a l , emotional instrumental and  competing  need f o r  and  support, concern f o r the f u t u r e , d e c i s i o n making, responsibilities.  Summary o f Stages and Themes  stage:  Contributing factors to caregiver stress Themes : Care r e c e i v e r s ' b e h a v i o r Care r e c e i v e r s ' d i s a b i l i t y Continuous c a r e P r o v i s i o n o f p h y s i c a l , emotional and i n s t r u m e n t a l C a r e g i v e r s ' concern f o r t h e f u t u r e Responsibility f o r decisions Competing r e s p o n s i b i l i t i e s  Stage:  E f f e c t s o f c a r e g i v i n g on t h e c a r e g i v e r Themes: P h y s i c a l e f f e c t s of caregiving S o c i a l e f f e c t s of caregiving Emotional r e a c t i o n r e l a t e d t o c a r e g i v i n g  stage:  Support systems and c o p i n g mechanisms Themes: Importance o f f a m i l y as a support C a r e g i v e r group as a support C o g n i t i v e ways o f coping  Stage : The group e x p e r i e n c e Themes: Informative Supportive  and e d u c a t i o n a l  Stage:  E f f e c t s on t h e c a r e g i v e r as a r e s u l t o f group p a r t i c i p a t i o n Themes: Increased i n s i g h t i n t o c a r e g i v i n g C o g n i t i v e changes i n c o p i n g w i t h c a r e g i v i n g C a r e g i v e r s ' b e h a v i o r a l changes M i n i m a l change i n p e r c e i v e d s t r e s s  Stage:  C a r e g i v e r s ' i n d i v i d u a l and s i t u a t i o n a l v a r i a b l e s Themes : Health Income S o c i a l support Nature o f p r i o r r e l a t i o n s h i p w i t h c a r e r e c e i v e r  support  Theme;  Care r e c e i v e r s ' behavior  The respondents  reported various c h a r a c t e r i s t i c s of the care  r e c e i v e r ' s behavior as being p a r t i c u l a r l y d i f f i c u l t .  While some  b e h a v i o r s were a r e s u l t o f t h e d i s a b i l i t y , o t h e r s were r e l a t e d t o the c a r e r e c e i v e r s ' adjustment  process.  Behaviors i n c l u d e d  c r y i n g , i g n o r i n g the c a r e g i v e r , r e s i s t a n c e t o accepting services, l a c k o f communication, being demanding, mood swings, poor memory, v e r b a l r e p e t i t i o n , and complaining.  As an example:  He c o u l d s o r t of i g n o r e me o r do whatever he feels like. So i t i s sometimes hard t o accept t h a t when I am t h e r e , h e ' l l l i s t e n t o h i s r e c o r d and read a book a t t h e same time. (Rl)  But now i t i s a wave...we a r e on an upper. He laughs and s m i l e s and he g i g g l e s and I don't know how l o n g i t i s going t o l a s t . I never know from one day t o t h e next what t o expect. (R6) She doesn't remember because her mind has been a f f e c t e d by t h e s t r o k e . Ten o r f i f t e e n minutes and she i s c a l l i n g me a g a i n . She's l i k e a r e c o r d t h a t ' s being p l a y e d over and over a g a i n . I t j u s t d r i v e s me up t h e w a l l . (R4)  Theme ;  Care r e c e i v e r s ' d i s a b i l i t y  The respondents  shared d i f f i c u l t experiences  related  s p e c i f i c a l l y t o f u n c t i o n a l l i m i t a t i o n s of t h e i r c a r e r e c e i v e r s r e s u l t i n g from t h e c h r o n i c d i s a b l i n g i l l n e s s .  As an example;  W a i t i n g f o r him t o f i n d t h e word. I'm i n a hurry and he's r i g h t away upset. I t ' s the d i f f i c u l t y t h e r e o f e x p r e s s i n g what he wants. (R3)  I am p e t r i f i e d a l l the time. I l i v e i n the fear t h a t he i s going t o take the wrong step and f a l l . (R6) Tomorrow i s the l a s t day [of therapy] f o r him. I t h i n k they cannot make him improve. He's not improving as much as they want and so t h e y ' r e going t o s t o p . (R8)  Theme;  Continuous  Care  The respondents c l e a r l y i n d i c a t e d the time-consuming and i n t e n s i v e nature o f p r o v i d i n g c a r e by d e s c r i b i n g themselves as b e i n g needed on a d a i l y b a s i s , 24 hours/day,  p r o v i d i n g constant  and t o t a l c a r e o f t e n w i t h few o r no breaks.  As an example:  The a c t u a l c a r e g i v e r i n t h e s m a l l even minute-to-minute o r hour-to-hour needs o f t h e person who needs c a r e . (Rl) I'd say i t i s a 24-hour helpmate, t o be t h e r e . (R3) I t ' s r e a l l y a t o t a l l o o k i n g a f t e r a person who i s not a b l e t o do so h i m s e l f . (R4) And I ' l l s t a y [up] l a t e p u r p o s e l y . . . from 10;00pm - 1:00pm so he can go t o the washroom...then he w i l l not wake up again...then I f e e l s a f e t o s l e e p . He i s under my s u p e r v i s i o n f o r 24 hours...I become t i r e d of a l l day l o n g t a k i n g c a r e o f him. (R8)  Theme:  P r o v i s i o n of p h y s i c a l , emotional and i n s t r u m e n t a l  support In d i s c u s s i n g t h e i r r o l e s as c a r e g i v e r s , the respondents r e v e a l e d t h e many demands f a c e d i n meeting r e c e i v e r s , i n c l u d i n g p h y s i c a l support  the needs o f c a r e  ( i e . h e l p i n g w i t h a bath,  b r u s h i n g t e e t h , l i f t i n g a w h e e l c h a i r , a s s i s t i n g w i t h walking and  movement, h e l p i n g w i t h e x e r c i s e s ) , emotional p r o v i d i n g reassurance,  moral support  with care r e c e i v e r s ' depression,  support ( i e .  and encouragement, d e a l i n g  adjustment i s s u e s and acceptance  of d i s a b i l i t y ) , and i n s t r u m e n t a l support  ( i e . household  management, meal p r e p a r a t i o n , b i l l payment, t r a n s p o r t a t i o n , making d o c t o r appointments). As an example:  When he wakes up, I have t o brush h i s t e e t h , wash h i s f a c e . I f I have t o take him t o t h e d o c t o r ' s , I have t o change him, then b e f o r e t h a t I have t o feed him b r e a k f a s t . . . l u n c h and dinner. I have t o cook s p e c i a l meal f o r him. (R8) I t i s going t o be a major t h i n g now because she i s r e a l i z i n g , i t ' s f o u r months...when am I g e t t i n g b e t t e r and I t h i n k t h i s i s a stage when t h e r e ' s going t o be r e a l d e p r e s s i o n s e t t i n g i n . (R4) I f e e l we j u s t g o t t a j u s t keep g i v i n g them hope. (Rl) When I looked a t t h a t handout you gave us o f a l l t h e t a s k s [ t h a t need t o be done] and i t was me, me, mel (R6)  Theme:  C a r e g i v e r s ' concern f o r t h e f u t u r e  Concern f o r t h e f u t u r e i n many r e s p e c t s was p r e v a l e n t throughout each i n t e r v i e w .  Respondents shared concerns r e g a r d i n g  the c a r e r e c e i v e r ' s mental w e l l - b e i n g , p h y s i c a l a b i l i t i e s and future deterioration.  References t o g e n e r a l and p e r v a s i v e worry  about t h e f u t u r e and f e e l i n g s of u n c e r t a i n t y were common. example :  As an  Course we don't know what he w i l l be c a p a b l e of when he comes home y e t . . . I mean I t h i n k I know what i t w i l l be l i k e , r i g h t , but I don't know f o r sure...So t h i s i s s o r t of i n t h e back of your mind, i f he has another s t r o k e . (Rl) Going up and down t h e s t a i r s w o r r i e s me. Her b e i n g i n t h e s i t u a t i o n t h a t she i s w i t h my s i s t e r - i n - l a w i s another problem t h a t I worry about. Her b e i n g l e f t alone a t n i g h t . . . Worry and concern about how t h i n g s w i l l work out...The thought o f t a k i n g c a r e of her as c l o s e l y as I do now. (R7) J u s t w o r r y i n g about my w i f e . . . and I am concerned about her. W e l l , I don't want h e r t o have a r e l a p s e o r d i e , q u i t e f r a n k l y . (R5) You know, you don't want t o be worrying about i t but t h e r e a g a i n , a t n i g h t , i t come f l i t t i n g i n t o your mind...and I say you s i l l y o l d l a d y , what a r e you worrying f o r . Leave i t f o r tomorrow. W e l l t h a t i s e a s i e r s a i d than done. (R3)  Theme:  Responsibility for decisions  The i n t e r v i e w d a t a r e v e a l e d t h a t c a r e g i v e r s were o f t e n faced w i t h a v a r i e t y o f d e c i s i o n s , many of which they have never encountered b e f o r e .  O f t e n t h e s o l e r e s p o n s i b i l i t y f o r making  d e c i s i o n s seemed t o accompany t h e i r r o l e and added t o t h e i r struggle.  As an example: We should f i n d an apartment...Yesterday we t a l k e d about i t and he d i d say he d i d n ' t want t o [move] but I might have t o go ahead and j u s t do something...! can see some d i f f i c u l t y a r i s i n g when a d e c i s i o n has t o be made. (Rl) I g i v e i t a l o t o f thought but I can't come t o a d e c i s i o n o r I haven't so f a r , I haven't a c t e d . More and more i t looks as i f mom w i l l have t o be p l a c e d i n a c a r e f a c i l i t y . And i t looks l i k e a s i t u a t i o n where t h e s h i p i s s i n k i n g and t h e l i f e r a f t can o n l y take so  much and who goes i n and who doesn't. That k i n d of a s i t u a t i o n and i t looks as i f I w i l l have t o c a l l the s h o t s . (R4)  Theme;  Competing r e s p o n s i b i l i t i e s  A majority  of the respondents d i s c u s s e d p r e v i o u s l y  r e s p o n s i b i l i t i e s t h a t were now  competing w i t h c a r e g i v i n g  r e s p o n s i b i l i t i e s f o r t h e i r time and  attention.  Most commonly  such r e s p o n s i b i l i t i e s i n c l u d e d s p o u s e / c h i l d r e n , p a r e n t s and work.  held  other  aging  As an example:  And then I have my husband's mother. She l i v e s alone, she's going t o be 84 i n March, so...my husband i s an only son, so you know we're s o r t of l o o k i n g a f t e r her as w e l l . (R2) You have t o handle your own f a m i l y as w e l l and look a f t e r t h e i r needs, and you have a job. (R7)  To summarize, the themes i d e n t i f i e d i n the i n t e r v i e w data i n d i c a t e s e v e r a l f a c t o r s t h a t p l a c e demands on  caregivers,  c o n t r i b u t i n g t o s i g n i f i c a n t l i f e s t y l e changes and e x p e r i e n c e of c a r e g i v e r s t r e s s .  The  to  e f f e c t s of p r o v i d i n g care  the c a r e g i v e r grew n a t u r a l l y from the d i s c u s s i o n and next  the  formed the  stage.  STAGE:  E f f e c t s Of C a r e g i v i n g  On The  Evidence of s i g n i f i c a n t and c a r e g i v i n g on the c a r e g i v e r s was  Caregiver  o f t e n long l a s t i n g e f f e c t s of overwhelming.  c a r e g i v i n g v a r i e d f o r each c a r e g i v e r i n type,  The number  e f f e c t s of and  on  i n t e n s i t y y e t c e r t a i n l y d i d e x i s t t o some extent f o r a l l . consequences i n d i c a t e d by t h e respondents  The  were c l u s t e r e d i n t o  themes o f p h y s i c a l , s o c i a l and emotional e f f e c t s of c a r e g i v i n g . Theme;  Physical effects of caregiving  P h y s i c a l e f f e c t s of c a r e g i v i n g r e f e r r e d t o p h y s i c a l exhaustion, g e n e r a l aches and p a i n s , n e g l e c t e d p e r s o n a l c a r e , and l o s s o f weight.  As an example;  I was doing e v e r y t h i n g and I was r e a l l y g e t t i n g snowed under and very t i r e d p h y s i c a l l y . (R7) ...nerves, I'd l o s t weight, you know, and n a t u r a l l y you l o s e weight because I wasn't making meals t h r e e times a day, I was here [at t h e h o s p i t a l ] . (R6) [I am] n u r s i n g elbow j o i n t s and back p a i n r i g h t now...I k i n d a f e e l run down a l l t h e time...I know I have l o s t a few pounds...and I'm k i n d of c o n s t i p a t e d t o some extent because I don't have a q u i e t time. (R4) I have become v e r y exhausted...! was l o s i n g a l o t o f h a i r . B i g patches, the l a r g e s t ones were l a r g e r than a loonie...My s t r e s s , I c o u l d n ' t e a t . I had no time t o e a t . (R8)  Theme; The hobbies,  S o c i a l e f f e c t s of c a r e g i v i n g  s o c i a l e f f e c t s of c a r e g i v i n g r e f e r r e d t o decreased little  time f o r e x e r c i s e , no p e r s o n a l time o r f a m i l y  time, f e e l i n g housebound and having no s o c i a l l i f e .  As an  example ; The s o c i a l l i f e i s gone zero now f o r us ( r e f e r r i n g t o her husband)...Haven't got a t h i n g r i g h t now. No hobbies. No going o u t . . . I t becomes i m p o s s i b l e t o have a l i t t l e chat on the phone. (R4)  I can't go f i s h i n g , o r gardening o r p l a y b r i d g e l i k e I used t o do. (R5) Our s o r t of s o c i a l l i f e , we had an a c t i v e s o c i a l l i f e , w e l l , now i t ' s s o r t o f down t o almost n i l . . . I mean we a r e always a t home. (R6) I cannot even go out w i t h my f r i e n d s , you know. He would not f e e l comfortable i f he s t a y s t o o long w i t h my f r i e n d s and my f r i e n d s w i l l not f e e l comfortable f o r , you know, n e g l e c t i n g him, not t a l k i n g t o him. Then who wants t o go out w i t h me a g a i n . (R8)  Theme; The  Emotional r e a c t i o n r e l a t e d t o c a r e g i v i n g  i n t e r v i e w data r e v e a l e d t h e range and mix of emotions  evoked by t h e c a r e g i v i n g experience i n c l u d i n g hope and optimism, i s o l a t i o n and s e l f - p i t y , worry, nervousness, r e s i g n a t i o n and g u i l t .  f e e l i n g s of  As an example:  Gives you h e a r t . . . I t s o r t of g i v e s you hope, you know, t h a t perhaps as time goes on, h e ' l l get s t r o n g e r . . . . ! j u s t f e e l a b i t s o r r y f o r myself I guess...But sometimes I f e e l t h a t something comes up and I am not h a n d l i n g i t . (Rl) No matter what I d i d , nothing would s a t i s f y him and then he would s o r t of wave me o f f and t h a t i s when I would get upset. I t h i n k oh I don't know i f I can handle t h i s . It i s like a r e j e c t i o n . . . I ' v e never, never experienced b e i n g weakened l i k e t h i s , you know, j u s t b a t h i s eye, and I c o u l d c r y . Mind you maybe i t s s e e i n g him l i k e t h a t too, you know, i t ' s shocking. I j u s t f e e l bad t o see him l i k e t h a t . (R6)  The g u i l t won't go away I f i n d , whether I j u s t continue l i v i n g t h e present way o r whether I put mother i n a c a r e f a c i l i t y , t h e r e i s g u i l t one way o r t h e o t h e r . Guilt  now because I f e e l I am l e a v i n g my husband on h i s own a l o t o r i f I put mom i n t h e r e , I f e e l sad because I put her i n t h e r e so the g u i l t p a r t s i t s h e a v i l y . (R4)  In sum, respondents  r e p o r t e d p h y s i c a l , s o c i a l and emotional  e f f e c t s r e l a t e d t o the incumbent demands and s t r e s s e s o f t h e i r caregiving role.  Support  systems of the respondents  and t h e i r  ways of c o p i n g w i t h the c h a l l e n g e s of c a r e g i v i n g tended t o f o l l o w and formed the next stage.  STAGE;  Support Systems And Coping Mechanisms  A n a l y s i s o f t h e i n t e r v i e w data r e v e a l e d s e v e r a l themes which i n d i c a t e d sources o f support and coping mechanisms f o r respondents importance  i n the c a r e g i v e r r o l e .  More s p e c i f i c a l l y , the  of having other f a m i l y members and t h e v a l u e of  a t t e n d i n g t h e c a r e g i v e r support group were r e f e r r e d t o f r e q u e n t l y as w e l l as c o g n i t i v e ways o f c o p i n g with t h e i r Theme;  The importance  situations.  o f having f a m i l y as a support  Though r e f e r r e d t o somewhat d i f f e r e n t l y , t h e v a l u e of support from other f a m i l y members i n the c a r e g i v i n g endeavour was addressed by each respondent. f a m i l y by acknowledging  Some r e c o g n i z e d t h e v a l u e o f  t h e i r f a m i l y members as a s s e t s w h i l e  o t h e r s p o i n t e d out t h e i r m i s f o r t u n e i n the absence o f f a m i l y support.  Support  from f a m i l y members r e f e r r e d mostly t o  emotional support but a l s o t o i n s t r u m e n t a l a s s i s t a n c e . As an example:  We don't have any r e l a t i v e s here, see cause t h a t makes a d i f f e r e n c e t o o . Not having any r e l a t i v e s here...But when t h i n g s a r e not going w e l l , a l l o f a sudden you a r e aware t h a t you don't have... anyone l i k e t h a t t o c a l l on. (Rl)  I f e e l f o r some of them t h e r e t h a t have nobody and I do have t h a t l i f e l i n e w i t h my f a m i l y . . . S o they were a wonderful source of s t r e n g t h . (R3) . . . i f I needed h e l p , a phone c a l l . That's a l l i t would take and they would be t h e r e . I would j u s t have t o say I need you and they would be there...Cause i f I f e e l s o r t of down and I want t o t a l k , she l i s t e n s . So i t i s r e a l l y good. (R6)  Theme;  C a r e g i v e r group as a support  In d i s c u s s i n g t h e reasons f o r a t t e n d i n g t h e c a r e g i v e r group, c o n v e r s a t i o n s i n d i c a t e d t h a t t h e group p r o v i d e d an o p p o r t u n i t y t o l e a r n about c a r e g i v i n g and t o be supported i n the c a r e g i v i n g effort.  More s p e c i f i c a l l y , t h e group environment  respondents' sense of i s o l a t i o n  decreased t h e  and allowed f o r t h e l e a r n i n g o f  r e s o u r c e s , how t o cope and p r o v i d e c a r e .  As an example:  S o r t of f o r t h e support...perhaps t o hear what other people were going through o r maybe gone through...To know t h a t you a r e not alone because I d i d f e e l v e r y much a l o n e . I d i d n ' t know anybody who was going through t h e same t h i n g so you a r e r e a l l y completely on your own. So i t was n i c e t o have a group where you were a l l having t h e same problems...and t o hear some of t h e t h i n g s I hadn't thought of...and i t was n i c e t o hear t h a t one man whose w i f e was improving. (Rl)  I knew I would be a c a r e g i v e r 24 hours ...and I wanted t o l e a r n and see what t h e r e was out t h e r e f o r help and how o t h e r managed and i t  has helped. But i t was more t o l i s t e n t o others...now I am so c l o s e t o i t , i t has helped q u i t e a b i t . (R3) Not being i n t h i s p o s i t i o n b e f o r e , I d i d n ' t r e a l l y know what was expected of me and I f e l t by a t t e n d i n g the seminars t h a t you'd get some s o r t of i d e a of what i s expected of you and what you should expect of him. (R6)  I wanted t o f i n d out and make sure I was doing the r i g h t t h i n g . I t makes you f e e l a l i t t l e b e t t e r t h a t you're not alone i n t h a t group. (R5)  Theme;  C o g n i t i v e ways of coping  The i n t e r v i e w data r e v e a l e d t h a t , i n c o p i n g w i t h t h e i r c a r e g i v i n g s i t u a t i o n s , the respondents of c o p i n g . accepting  employed c o g n i t i v e methods  More s p e c i f i c a l l y , respondents  i n d i c a t e d attempts  at  the t h i n g s they c o u l d not change and r e f r a m i n g the  s i t u a t i o n more p o s i t i v e l y . an understanding  Taking one day a t a time and  of the i l l n e s s was  also useful.  having  As an example:  You know you t h i n k w e ' l l never be a b l e t o do t h i s or t h a t but when you r e a l l y t h i n k about i t , i t ' s not r e a l l y t h a t important. It i s j u s t the road t h a t has changed and i t i s not n e c e s s a r i l y bad. (R3) I t r i e d t o handle t o the s t r e s s as p h i l o s o p h i c a l l y as p o s s i b l e . . . t o say t h a t t h a t i s the nature of the i l l n e s s and t h e r e f o r e I shouldn't get annoyed. (R4)  While  f r i e n d s , formal supports  ( i e . homemaking h e l p ) ,  and  r e l i g i o n were mentioned by some as p l a y i n g a p a r t i n t h e i r support system, an emphasis on f a m i l y support, support group involvement  and c o g n i t i v e c o p i n g mechanisms were of more  s i g n i f i c a n c e t o the respondents.  STAGE;  The  I t was  Group  Experience  i n t e r e s t i n g t o f i n d t h a t throughout the  interviews  respondents c o n t i n u a l l y made r e f e r e n c e t o the experience i n a c a r e g i v e r group.  The  comments represented  i n d i c a t i n g the group experience e d u c a t i o n a l and  Theme; The  two  of  being  themes,  t o have been i n f o r m a t i v e /  supportive.  Informative  and  educational  respondents i n d i c a t e d t h a t the group experience  b e n e f i c i a l because of the i n f o r m a t i o n shared r e g a r d i n g and c a r e g i v i n g i s s u e s i n g e n e r a l .  was resources  As an example;  I t h i n k i t i s e d u c a t i o n a l . The d i f f e r e n t i d e a s and where t o get d i f f e r e n t t h i n g s , resources t h a t c o u l d h e l p you. (Rl) I found the group i n t e r e s t i n g . Problems v a r i e d and s h a r i n g of i d e a s . (R3) W e l l , you s o r t of l e a r n t h a t maybe one way of doing something c o u l d be more b e n e f i c i a l t o do i t another way and somebody i n the group has suggested t h i s , so t h e r e f o r e you f e e l , w e l l yes I have l e a r n e d something. (R6) ...because you have g i v e n some p l a c e s , names f o r us t o get i n touch w i t h i f we need t o . (R8) Theme:  Supportive  A p e r v a s i v e theme among the respondents was the support  t h a t was  word ' s u p p o r t i v e ' was  r e c e i v e d and  w i t h regards  f e l t w i t h i n the group.  used by the respondents as they  f e e l i n g l e s s i s o l a t e d and r e a s s u r e d .  A l s o , they  heard  to  The  described  experiences o f o t h e r s t h a t were s i m i l a r t o t h e i r own, comparing and r e l a t i n g t o o t h e r s , and n o r m a l i z i n g t h e i r  feelings.  As an example: I t f e l t [good] t o know t h a t everybody t h e r e was i n v o l v e d i n the same s o r t of problems.. And so i t f e l t good t o know t h a t you were not a l o n e . Well i t was support t o know t h a t t h e r e a r e other people who a r e going through e x a c t l y the same o r almost e x a c t l y the same as what you a r e going through. (Rl) To see someone e l s e and be a b l e t o say, you know, I was l i k e t h a t l a s t week, and you can empathize w i t h them. That i s c o m f o r t i n g . You don't mind t a l k i n g about t h i n g s because you know t h a t e i t h e r somebody's experiences the f e e l i n g o r had i t b e f o r e o r say they might get t o f e e l l i k e t h a t t o o . I t h i n k i t i s very good when we a r e a l l i n the same boat. (R3) I f e l t l i k e I had gotten away from i t f o r awhile. And s h a r i n g s i m i l a r s i t u a t i o n s and problems helped t h a t ' s f o r sure. (R7) . . . r e a l i z e d j u s t t h e r o l e o f the c a r e g i v e r and I found t h a t p o s s i b l y , p a r t o f i t , I was doing r i g h t . (R6) The f a c t t h a t t h e r e a r e o t h e r people doing e x a c t l y t h e same t h i n g t h a t I was, l o o k i n g a f t e r p a t i e n t s , and t h a t they were s u r v i v i n g and I was going t o s u r v i v e t o o . (R5)  O v e r a l l , the themes t h a t evolved r e g a r d i n g t h e group experience were p o s i t i v e and i n d i c a t e d s a t i s f a c t i o n among respondents. STAGE:  E f f e c t s On The C a r e g i v e r As A R e s u l t Of Group Participation  Interview data r e v e a l e d respondents' p e r c e p t i o n s o f the e f f e c t s o f p a r t i c i p a t i n g i n t h e support group.  The themes t h a t  emerged r e f e r r e d t o an i n c r e a s e i n i n s i g h t , c o g n i t i v e changes i n coping  and  behavioral  Theme; One  Increased  changes. insight into caregiving  e f f e c t of p a r t i c i p a t i n g i n the c a r e g i v e r group f o r the  respondents was  a b e t t e r understanding of the c a r e g i v e r  r e c o g n i t i o n of how  role,  p r o v i d i n g c a r e e f f e c t s each of them, and  l i m i t s i n providing care.  their  Respondents a l s o s t a t e d having gained  a g r e a t e r awareness, f e e l i n g more informed and prepared.  As  an  example; I am more aware of what c o u l d happen and how t h i n g s c o u l d be. Having t h a t i n f o r m a t i o n , i t won't seem so bad when something happens t h a t I don't understand or can't do anything about. Because I have the i n f o r m a t i o n t h a t c a r e g i v e r s can get i n t o d i f f e r e n t emotional s t a t e s . So h o p e f u l l y having t h a t knowledge, I won't f e e l bad about i t , a t l e a s t I ' l l know t h a t t h i s c o u l d be f a i r l y normal or a c c e p t a b l e . (Rl) I guess I was a l i t t l e a f r a i d of or not e x a c t l y a f r a i d but the f e a r of the unknown but because now I am more aware of what i t i s a l l about. And I b e l i e v e t h a t has been very e f f e c t i v e . (R3) I t ' s a f u l l - t i m e j o b . . . I r e a l l y j u s t can't p u l l you up and down the s t a i r s . . . ! don't know i f I c o u l d have my mom l i v e w i t h me f u l l - t i m e . I know I t h i n k i t would be a b i g s t r a i n on me. I guess I'm s t a r t i n g t o r e a l i z e w e l l you know a c t u a l l y I'm doing her a f a v o r . (R2) I understand h i s p l i g h t a l o t b e t t e r .  Theme;  (R6)  C o g n i t i v e changes i n coping w i t h c a r e g i v i n g  When q u e s t i o n e d about changes t h a t r e s u l t e d from  attending  the group, responses i n d i c a t e d the development of d i f f e r e n t  p e r s p e c t i v e s t o cope more e f f e c t i v e l y with t h e i r c a r e g i v i n g situation.  Such c o g n i t i v e r e f r a m i n g  i n c l u d e d a more p o s i t i v e  o u t l o o k on c a r e g i v i n g , i n c r e a s e d sense o f c o n f i d e n c e , a w i l l i n g n e s s t o take one day a t a time and acknowledgement of the c a r e g i v e r having  needs t o be f u l f i l l e d .  As an example:  I t h i n k I see i t i n a more p o s i t i v e l i g h t now because h e a r i n g the group t a l k and how some people were f i n d i n g i t r e a l l y a [ p o s i t i v e experience]. So i t was n i c e t o hear t h e different positives. So I t h i n k t h e p o s i t i v e t h i n g s helped me a l o t . (Rl) I t h i n k I ended up w i t h more c o n f i d e n c e . I've accepted i t . And t h a t helps too, you know, because you j u s t have t o s o r t of a n t i c i p a t e what c o u l d happen and what you want t o do, and t r y t o do some p l a n n i n g f o r i t . (R5) I t r e a l l y helped a l o t because I decided t h a t I am not as bad o f f as t h e other l a d i e s . . . ! don't t h i n k o f i t as s t r e s s anymore. I j u s t f i g u r e I am going t o help him period...But j u s t f a c i n g i t day t o day. I don't get hyper anymore. A t one time I'd get e x c i t e d because I d i d n ' t do something r i g h t . But now I don't. I t h i n k , hey I g o t t a l i v e t o o . (R6) You r e a l i z e t h a t maybe ! should f e e l t h a t way (relaxed) t o o . I'm not going t o s o l v e a l l t h e problems whether I c a r r y them on my shoulders or not. (R7) I t has been a l i t t l e e a s i e r t o say... a l l o w myself t o come t o t h i s d e c i s i o n o f p u t t i n g her i n t o a care f a c i l i t y and t h a t d e c i s i o n was very hard f o r me t o come t o . (R4) But b e f o r e you can come t o t h a t p o s i t i v e , you have t o go though t h i s s t r e s s and negative and then you can say 'what's the p o i n t ' . (R7)  Theme: The  C a r e g i v e r s ' b e h a v i o r a l changes  respondents spoke of changes i n how they would perform  t h e i r c a r e g i v i n g d u t i e s and i n coping with t h e i r  situation.  Changes i n c l u d e d a s k i n g f o r h e l p , u s i n g r e s o u r c e s , b e t t e r communication, and encouraging  the care r e c e i v e r s ' independence  ( i e . decreasing caregiver's t a s k s ) . coiranents about how  Most p r e v a l e n t though were  they would b e t t e r take c a r e of themselves as  r e s u l t of d i s c u s s i o n s i n the group.  As an example:  T r y i n g t o look a f t e r myself a l i t t l e b i t b e t t e r . And a s k i n g f o r h e l p . (Rl) It c e r t a i n l y reinforced looking a f t e r y o u r s e l f . . . a n d those words have helped formulate what I should do. (R4)  me  I t h i n k I would t a l k t o [mother] more about i t and e x p l a i n , and r e a l l y be honest w i t h her and i n v o l v e her i n whatever we're t h i n k i n g of d o i n g . (R2) You have t o s t a r t a s k i n g f o r h e l p . You have t o open up and we can't do e v e r y t h i n g perfectly. I have s t a r t e d t o r e a l i z e . . . t h a t you j u s t have t o l e t go. So I found t h a t i t d i d h e l p as I r e f l e c t e d back t o the meetings and l i s t e n i n g t o some of the o t h e r s . (R3) I l i k e d t h a t the c a r i n g f o r myself emphasized the need t o take c a r e of myself. And I'm going t o see our G.P. and I'd even d e f e r r e d s e e i n g our d e n t i s t and I'm going t o see him next week and t h a t i s p a r t of the reason. (R5) . . . i f I were doing something and s o r t of had the o p p o r t u n i t y t o d i s c u s s i t w i t h the group then you go home s o r t of a l i g n e d w i t h the i d e a and l e t ' s t r y i t t h i s way...Now I am t r y i n g t o make him independent. I f e e l b e t t e r t h a t I'm . . h e l p i n g him t o t r y and be independent. (R6)  Theme:  Minimal change i n p e r c e i v e d s t r e s s  In response t o q u e r i e s r e g a r d i n g changes i n p e r c e p t i o n s of  t h e i r s t r e s s as a r e s u l t o f group p a r t i c i p a t i o n , respondents i n d i c a t e d minimal o r no d i f f e r e n c e s stress.  i n t h e i r experience of  As an example: I am not r e a l l y sure i t has made t h a t much d i f f e r e n c e w i t h regards t o s t r e s s . Mainly because I s t i l l l o o k t o prayer t o r e l i e v e stress. I get a g r e a t peace w i t h p r a y e r and so I am not sure, i t c o u l d have, I'm j u s t not s u r e . (Rl) No, i t i s j u s t t h a t I t h i n k my nerves may be a b i t worse then when I f i r s t j o i n e d because I am g e t t i n g more o f t h e c a r e g i v e r j o b as h e ' l l be coming home soon. (R3)  D e s p i t e t h e respondents' r e p o r t s o f a c q u i r e d cognitive  insights,  changes i n coping and b e h a v i o r a l changes, the  respondents r e p o r t e d l i t t l e o r no change i n t h e i r p e r c e p t i o n of stress related t o caregiving. the  caregivers'  of t h e f i n a l stage,  i n d i v i d u a l and s i t u a t i o n a l v a r i a b l e s ,  some i n s i g h t i n t o t h i s  STAGE;  Descriptions  provides  finding.  Caregivers' Individual  And S i t u a t i o n a l  Variables  While respondents were s i m i l a r i n t h a t they a l l were providing  c a r e t o a c h r o n i c a l l y i l l r e l a t i v e , the i n t e r v i e w data  revealed i n d i v i d u a l differences s i t u a t i o n unique. variables  among them which made each  The c a r e g i v e r s '  i n d i v i d u a l and s i t u a t i o n a l  e f f e c t each o f t h e p r e v i o u s stages and i n c l u d e d  health,  income, s o c i a l support, nature o f p r i o r r e l a t i o n s h i p w i t h care receiver,  g e n e r a t i o n a l and c u l t u r a l e x p e c t a t i o n s , and a p p r a i s a l  of  situation.  As  an example:  So much has t o do w i t h my p h y s i c a l you understand. Cause when you f e e l w e l l you can handle e v e r y t h i n g . I mean when I f e e l w e l l I am t h i n k i n g o f a l l t h e t h i n g s I want t o do. (Rl) So I thank G-d t h a t I've got these women ( r e f e r r i n g t o her daughters) around t h a t , as nuisance as they a r e sometimes, a l l I have t o do i s say h i and they say what i s t h e matter. They a r e t h e r e f o r me. (R3)  ...the s i t u a t i o n t h a t she i s i n [with my s i s t e r - i n - l a w ] that's quite a pressure, quite s t r e s s f u l . (R7) I mean we have been together f o r 48 y e a r s so t h e r e i s no way t h a t our l i f e c o u l d be separated...we're both i n i t t o g e t h e r . (R3) I know t h a t he l o v e s me, he a p p r e c i a t e s what I'm doing f o r him. He s a i d I'm t h e best w i f e he hasl (R8) Now my problem i s , i f I don't work I w i l l have f i n a n c i a l problems but i f I work, who w i l l have him...and I'm a f r a i d i f t h i s keeps on longer I might a l s o have a nervous breakdown. (R8) Because mom i s t h e l a s t of t h e s e n i o r s i n our f a m i l y . A l l t h e o t h e r s have passed away and because she i s t h e l a s t and of course we have aged i n t h e meantime, she gets t h e s h o r t end of t h e s t i c k I f e e l . (R4)  Borne from t h e q u a l i t a t i v e a n a l y s i s o f t h e i n t e r v i e w  data,  an understanding and c o n c e p t u a l i z a t i o n o f t h e c a r e g i v i n g e x p e r i e n c e , c a r e g i v e r s t r e s s and t h e e f f e c t s o f support group involvement on s t r e s s developed. which formed t h e presented s t a g e s . existence  Elements c l u s t e r e d i n t o themes Findings  i n d i c a t e the  o f many c o n t r i b u t i n g f a c t o r s t o c a r e g i v e r s t r e s s and  the v a r i o u s e f f e c t s o f c a r e g i v i n g on t h e c a r e g i v e r .  The  i n t e r v i e w data r e v e a l e d the importance of support coping w i t h the c h a l l e n g e s of p r o v i d i n g c a r e .  systems i n  Moreover, the  f i n d i n g s h i g h l i g h t the b e n e f i t s d e r i v e d from p a r t i c i p a t i n g i n a c a r e g i v e r support  group d e s p i t e l i t t l e or no change i n p e r c e p t i o n  of s t r e s s r e l a t e d t o c a r e g i v i n g .  Q u a n t i t a t i v e a n a l y s i s of The  PSS  respondents pre-and post-group s c o r e s from the PSS  t a b u l a t e d and are presented the d a t a from the PSS, graph i n F i g u r e  i n Table 4.  were  To f u r t h e r i l l u s t r a t e  the s c o r e s have been transposed  i n t o a bar  3.  While the PSS  i s not a measure of p s y c h o l o g i c a l  symptomatology, the scores do p r o v i d e i n s i g h t i n t o a s s e s s i n g respondents'  p e r c e p t i o n of t h e i r s t r e s s w i t h a h i g h e r  score  i n d i c a t i n g h i g h e r l e v e l of s t r e s s (Cohen e t a l . , 1983; Williamson,  1988).  from 21 t o 33  The  Cohen &  scores f o r the group as a whole ranged  (highest p o s s i b l e score - 56).  Three  respondents'  scores i n c r e a s e d f o l l o w i n g the group program, t h r e e  respondents'  scores decreased  f o l l o w i n g the group, and two  remained the same. decreased,  f o u r , two  and  scores  For those t h r e e respondents whose scores  the scores decreased  respondents'  respondents'  by two p o i n t s .  For the  three  whose scores i n c r e a s e d , the scores i n c r e a s e d by f i v e points r e s p e c t i v e l y .  Respondents'  Respondent  Scores from PSS  P e r c e i v e d S t r e s s Score B e f o r e Group A f t e r Group  Point  Change  1  24  28  t 4  2  25  23  T 2  3  23  21  i  24  22  5  33  33  0  6  21  21  0  7  24  26  T 2  8  22  27  Î 5  4'  •  •  V- .  '  2  i 2  Figure 3 Bar Graph of Respondents' Perceived Stress Scores  •  BefcxeOoup • After Qoip  L i n k i n g Q u a l i t a t i v e and Q u a n t i t a t i v e Data For each respondent, the q u a n t i t a t i v e data and  s i g n i f i c a n t aspects of the q u a l i t a t i v e data  i n d i v i d u a l and  s i t u a t i o n a l information e l i c i t e d  i n t e r v i e w s ) were matched and are presented  (scores from  PSS)  (demographic, d u r i n g the  i n Table  5.  In Table 5, the q u a l i t a t i v e d a t a p r o v i d e s p o s s i b l e e x p l a n a t i o n s f o r the respondents'  PSS  c o r r o b o r a t i n g the r e s u l t s of the  PSS.  scores, further  Support Group E v a l u a t i o n Form The e v a l u a t i o n form was  completed by each respondent at the  end of the f i n a l s e s s i o n of the group program. e v a l u a t i o n form was addressed  Completion of the  not uniform i n t h a t not a l l respondents  each q u e s t i o n as f u l l y as o t h e r s .  feedback r e c e i v e d was  Regardless,  the  i n f o r m a t i v e t o the study as i t p r o v i d e d  o p p o r t u n i t y t o examine the f i t between responses on e v a l u a t i o n form w i t h responses d u r i n g the i n t e r v i e w .  an  the While  no  a d d i t i o n a l themes were r e v e a l e d , the comments on the e v a l u a t i o n form d i d r e i n f o r c e the themes which emerged from the i n t e r v i e w s . Comments e l i c i t e d presented  i n Table  on the e v a l u a t i o n form were c o l l a t e d and 6.  are  F i n d i n g s from the PSS  Respondent  P e r c e i v e d S t r e s s Score B e f o r e G r o u p / A f t e r Group  and  Interviews  I n t e r v i e w Data  1  24  28  C a r e g i v e r was p h y s i c a l l y u n w e l l , had few f a m i l y supports, p e r c e i v e d l i t t l e c o n t r o l over her s i t u a t i o n , and had attended a h o s p i t a l meeting r e g a r d i n g her c a r e r e c e i v e r i n which a poor p r o g n o s i s was g i v e n .  2  25  23  C a r e g i v e r was w e l l supported by f a m i l y , w i t h shared d e c i s i o n making. Care r e c e i v e r ' s h e a l t h was improving and was d e s c r i b e d as a reasonable and u n d e r s t a n d i n g person. Home support s e r v i c e s were r e a d i l y a c c e p t e d by the c a r e r e c e i v e r . C a r e g i v e r now f e l t c h o i c e s made were appropriate.  3  23  21  Care r e c e i v e r was s t i l l progressing i n therapy. C a r e g i v e r had a v e r y good r e l a t i o n s h i p with care r e c e i v e r and a s t r o n g sense of family support. F e l t the group p r e p a r e d her f o r the future.  4  24  22  C a r e g i v e r s t a t e d she f e l t she had e x p l o r e d every o p t i o n a v a i l a b l e and t h a t the group a s s i s t e d her i n working through the d e c i s i o n of f a c i l i t y c a r e f o r her c a r e receiver.  F i n d i n g s from t h e PSS and Interviews  Respondent  5  P e r c e i v e d S t r e s s Score B e f o r e Group/After Group  I n t e r v i e w Data  33  33  Care r e c e i v e r had made a good recovery. He spoke o f c o n f i d e n c e i n p r o v i d i n g care and takes h i s c a r e g i v i n g responsibilities seriously. Very s t r o n g attachment t o c a r e receiver.  6  21  21  Had caxe r e c e i v e r home f o r a p e r i o d o f time and had e s t a b l i s h e d r o u t i n e s t h a t were working w e l l . Came t o t h e group f o r a f f i r m a t i o n o f what she was d o i n g .  7  24  26  Family f e u d was e s c a l a t i n g . C a r e g i v e r ' s husband had unexpected o p e r a t i o n . Care r e c e i v e r was ready f o r d i s c h a r g e and would be l i v i n g with caregiver temporarily.  8  22  27  Care r e c e i v e r was no l o n g e r improving and soon t o be discharged. C a r e g i v e r was p r o v i d i n g 24 hour care w i t h l i t t l e f a m i l y o r homemaking support. F i n a n c i a l concerns were mounting.  •  Summary o f support Group E v a l u a t i o n Form  1.  P l e a s e c i r c l e t h e number t h a t b e s t r e f l e c t s your o p i n i o n o f t h i s •3 c i r c l e d ' L i k e d somewhat' •5 c i r c l e d ' L i k e d v e r y much-I l e a r n e d a l o t ! '  program.  2.  I f you had a f r i e n d who was a c a r e g i v e r , would you recommend t h e program? •Yes, t o h e l p a c a r e g i v e r by l e t t i n g him/her know o f a p o s s i b l e resource. •Yes, a b e t t e r understanding o f s t r e s s . •Yes, I t h i n k i t ' s v e r y i n f o r m a t i v e and h e l p f u l . •Yes, i t improves c a r e g i v i n g . •Yes, t o l e a r n how t o cope.  3.  Has t h i s program changed t h e way you f e e l about c a r e g i v i n g ? •Yes, I r e a l i z e how l u c k y I am. •Yes, I have more understanding o f t h e d i f f e r e n t i s s u e s . •Yes, more prepared, more informed. •Yes, now I know I am not t h e o n l y one i n t h i s s i t u a t i o n b u t t h e r e a r e so many l i k e me. •Yes, u n d e r s t a n d i n g t h e d i s a b l e d p a r t y . •No, t h e r e a r e no simple answers and d e c i s i o n s are s t i l l a b i g worry.  4.  W i l l you do t h i n g s d i f f e r e n t l y as a r e s u l t o f p a r t i c i p a t i n g i n t h e group? •Yes, t a k e more time f o r m y s e l f and my f a m i l y . •Yes, u n d e r s t a n d i n g , f i n d a d i s t r a c t i o n . •Yes, I ' l l t r y t o g e t h e l p and g i v e myself a l i t t l e t r e a t sometimes. •Yes, be more a c c e p t i n g o f t h e program. •Yes, ask f o r h e l p . •Yes, be more communicative.  5.  Do you use a n y t h i n g you l e a r n e d now? •Yes, improved communication. •Yes, b e i n g more understanding. •Yes, p a t i e n c e . •Yes, I ' l l t r y t o accept t h e f a c t t h a t t h e s i t u a t i o n I am i n now i s somewhat o u t o f my c o n t r o l . I ' l l j u s t have t o l e a r n not t o blame anybody.  6.  W i l l you use a n y t h i n g you l e a r n e d i n t h e f u t u r e ? •Yes, n o t t o f e e l g u i l t y about m y s e l f . •Yes, t a k e some time f o r myself, t o be more b a l a n c e d i n c o p i n g w i t h t h e situation. •Yes, c a r i n g f o r m y s e l f . (2 responses) •Yes, r e s o u r c e s t h a t we can g e t a s s i s t a n c e . •Yes, n o t b e i n g a f r a i d t o ask f o r h e l p whatever t h e case may be. •Maybe, one has t o be s t r o n g and tough e m o t i o n a l l y t o f a c e t h e r e a l i t i e s of life.  7.  Which p a r t s o f t h e program would you l i k e t o see more time spent on? •counselling f o r caregivers • h e a l t h y communication •keep as i s • d i f f e r e n t ways t o reduce s t r e s s •the e x p e r i e n c e s o f c a r e g i v e r s  8.  I f we have t o c u t some t h i n g s o u t o f t h i s program, what s h o u l d we c u t ? •Nothing c u t , j u s t maybe s h o r t e n each t o p i c a l i t t l e .  G e n e r a l comments : •I t h i n k i t i s an e x c e l l e n t program, e s p e c i a l l y when we t a l k about our p a r t i c u l a r problem and [ t h e l e a d e r ] o r a member o f t h e group g i v e s h i s or h e r i d e a . •Thank you f o r p r o v i d i n g a s i t t e r f o r my mother. Without t h i s h e l p , I would n o t have been a b l e t o a t t e n d t h e s e s e s s i o n s . •I a p p r e c i a t e d t h e concern f o r c a r e g i v e r s and t h e e f f o r t t o improve them. • T h i s has been a v e r y h e l p f u l , i n f o r m a t i v e s e r i e s o f meetings and I f e e l I g a i n e d i n s i g h t s i n t o my s i t u a t i o n I wouldn't have o t h e r w i s e . •I l i k e t h i s program because people i n t h e c l a s s were so w i l l i n g t o share t h e d i f f i c u l t i e s they a r e having w i t h t h e persons they a r e c a r i n g for. That made me f e e l t h a t I am not alone i n t h i s . • s h a r i n g o u r thoughts are hand i n hand.  g i v e s me some p i e c e o f mind,  s h a r i n g and c a r i n g  • T h i s program i s b e n e f i c i a l - h e l p s t o understand both s i d e s o f i l l n e s s . I now have a b e t t e r o u t l o o k i n a c c e p t i n g day t o day problems and a b l e t o cope.  In the chapter t o f o l l o w , the f i n d i n g s presented w i l l d i s c u s s e d i n r e l a t i o n t o the preceeding l i t e r a t u r e  review  (Chapter 2) and the t h e o r e t i c a l framework (Chapter 3 ) .  be  Chapter S i x D i s c u s s i o n of  Findings  S  Introduction The  f o l l o w i n g d i s c u s s i o n w i l l address the f i n d i n g s from the  i n t e r v i e w s , the PSS, between the two, presented  the i n f o r m a t i o n y i e l d e d from the marriage  and the e v a l u a t i o n form.  The  f i n d i n g s are  i n r e l a t i o n t o the t h e o r e t i c a l framework and r e l a t e d  t h e o r i e s , r e l e v a n t s t u d i e s , and methodological  A C o n c e p t u a l i z a t i o n of C a r e g i v e r and  issues.  Stress  the E f f e c t s of Support Group Involvement on  Stress  From the a n a l y s i s of the i n t e r v i e w data and the PSS  scores,  a c o n c e p t u a l i z a t i o n of c a r e g i v e r s t r e s s and the e f f e c t s of support  group involvement on s t r e s s emerged and  F i g u r e 4.  The  i s presented  conceptualization i s useful i n i l l u s t r a t i n g  f i n d i n g s of the study and  in the  i n making l i n k a g e s t o the t h e o r e t i c a l  framework. The  c o n c e p t u a l i z a t i o n i s comprised of stages  constructed  from the major themes uncovered i n the i n t e r v i e w data and i s i n f l u e n c e d by the f i n d i n g s of the PSS The  and the e v a l u a t i o n form.  understanding begins w i t h the i d e n t i f i c a t i o n of c o n t r i b u t i n g  f a c t o r s t o s t r e s s as p e r c e i v e d by the c a r e g i v e r s and the  various  e f f e c t s of c a r e g i v i n g on the c a r e g i v e r .  provide  i n s i g h t on coping mechanisms and  Support systems  i n f l u e n c e s the c o n t r i b u t i n g  f a c t o r s t o s t r e s s and the e f f e c t s of c a r e g i v i n g on the  caregiver.  The  group  experience  of p a r t i c i p a t i n g i n a c a r e g i v e r support  and  Figure 4 A Conceptualization of Caregiver Stress and the Effects of Support Group Involvement  Individual and Situational Variables  Contributing Factors to Stress  Effects of *' Caregiving on the Caregiver  Support Systems  *"  Group Experience  Adapted From: Caregiver Stress - Coping Model Developed by Biegel, Sales & Schultz, 1991  Resultin Effects  the changes t h a t r e s u l t a l s o i n f l u e n c e the t o s t r e s s and  the e f f e c t s of c a r e g i v i n g  F i n a l l y , i n d i v i d u a l and  factors  on the  contributing  caregiver.  s i t u a t i o n a l v a r i a b l e s a f f e c t each of  the  p r e c e d i n g stages. S i m i l a r i t i e s e x i s t between the c o n c e p t u a l i z a t i o n i n F i g u r e 4 and (Chapter 3 ) .  the t h e o r e t i c a l framework presented i n F i g u r e 2  Contributing  both, however, the factors and  f a c t o r s t o s t r e s s are r e p r e s e n t e d i n  f i n d i n g s from the  (concern f o r the  study i n d i c a t e a d d i t i o n a l  future, r e s p o n s i b i l i t y for  decisions,  competing r e s p o n s i b i l i t i e s ) as s i g n i f i c a n t l y c o n t r i b u t i n g  stress.  The  v a r i o u s e f f e c t s ( p h y s i c a l , s o c i a l and  the c a r e g i v e r  The  the impact on the c a r e g i v i n g conceptualization  and  experience i s r e v e a l e d  The  and  of  Finally,  the  s i t u a t i o n a l v a r i a b l e s as they a f f e c t each stage v a r i a b l e s i n the  framework,  the a p p r a i s a l component i n the experience of conceptualization  drawing a t t e n t i o n t o the i l l u s t r a t i n g how  i n t e r v e n t i o n of group work  the group experience and  the e f f e c t s of c a r e g i v i n g  i l l u s t r a t e d i n the  and stress.  informs the t h e o r e t i c a l framework, and  the e f f e c t s  p a r t i c i p a t i o n r e l a t e back t o the c o n t r i b u t i n g  caregiving  on'  the  c e r t a i n l y r e l a t e s t o the i n f l u e n c e  resemble the c o n d i t i o n i n g includes  in  to  and  importance of support systems  f a m i l y dimensions i n the t h e o r e t i c a l framework. i n d i v i d u a l and  emotional)  are a l s o i d e n t i f i e d i n the c o n c e p t u a l i z a t i o n  the t h e o r e t i c a l framework.  and  presented  factors to  on the c a r e g i v e r .  f i g u r e f u r t h e r i n f o r m the  on  The  stress  findings  literature  as i t demonstrates the i n t e r a c t i v e nature of  on the  as  p r o c e s s of  caregiving.  O v e r a l l , the a n a l y s i s r e v e a l s many s i m i l a r i t i e s t h a t e x i s t between the c o n c e p t u a l i z a t i o n  derived  t h e o r e t i c a l framework which guided the a d d i t i o n a l information and  regarding  i t s r o l e i n the c a r e g i v i n g  conceptualization  from the study.  f i n d i n g s and  I t also provides  group work as an  experience.  intervention  While  i s u s e f u l i n i n t e g r a t i n g and  the  the  illustrating  f i n d i n g s i n a g e n e r a l sense, a b r i e f d i s c u s s i o n of  the  significant  f i n d i n g s from each of the instruments i s warranted. Interviews The  f i n d i n g s from the i n t e r v i e w s  respondents' c a r e g i v i n g  experience, the C a r e g i v e r S t r e s s - C o p i n g  Model (the model p r e v i o u s l y caregiving  literature.  p r e s e n t e d i n Chapter T h r e e ) , and  (care r e c e i v e r s ' behavior and concern f o r the  r e s p o n s i b i l i t i e s , and instrumental caregiver  the  More s p e c i f i c a l l y , the themes which  emerged t o r e p r e s e n t c o n t r i b u t i n g  care,  i n d i c a t e l i n k s between the  factors to caregiver  d i s a b i l i t y , p r o v i s i o n of continuous  f u t u r e , d e c i s i o n making and the  assistance)  stress  competing  p r o v i s i o n of p h y s i c a l , emotional and  e f f e c t s of c a r e g i v i n g  on  and  the  ( p h y s i c a l , s o c i a l and  emotional e f f e c t s ) are  well  supported i n the l i t e r a t u r e and  are c l o s e l y r e l a t e d t o  variables  i n the C a r e g i v e r S t r e s s - C o p i n g Model (Abel, McCallion  e t a l . , 1994;  Toseland e t a l . , 1990).  emerged t o r e p r e s e n t the group experience educational  and  1990;  The  1983;  themes which  (informative,  s u p p o r t i v e ) are a l s o found i n the  ( B i e g e l e t a l . , 1991;  Cantor,  Toseland e t a l . , 1989).  literature  w i t h r e s p e c t t o changes i n p e r c e i v e d  s t r e s s , the interview  d a t a r e v e a l s t h a t respondents i n d i c a t e d minimal o r no change i n s t r e s s as a r e s u l t o f a t t e n d i n g  the support group program.  This  f i n d i n g can be understood g i v e n respondents i n d i c a t i o n t h a t they c o u l d not i s o l a t e the e f f e c t s o f the group on t h e i r experience of s t r e s s as other i n f l u e n c e s e x i s t e d c o n c u r r e n t l y f a m i l y support, p h y s i c i a n involvement).  ( i e . increased  The modest change i s  a l s o understandable as respondents d e s c r i b e d t h e many f a c e t s o f the c a r e g i v i n g r o l e , f a c e t s which a r e not s t a t i c , a r e ever changing and e f f e c t t h e experience of s t r e s s ( i e . c u r r e n t p h y s i c a l s t a t u s of the care r e c e i v e r , c a r e g i v e r ' s p h y s i c a l w e l l being,  caregiving tasks required).  S i m i l a r l y i d e n t i f i e d i n the  t h e o r e t i c a l framework, t h e importance o f i n d i v i d u a l and s i t u a t i o n a l v a r i a b l e s on c a r e g i v i n g and t h e experience o f s t r e s s i s h i g h l i g h t e d here. e f f e c t s of a t t e n d i n g  The f i n d i n g f u r t h e r suggests t h a t t h e a support group are, i n p a r t , r e l a t e d t o the  t i m i n g of the support group f o r each i n d i v i d u a l . As the respondents shared t h e i r s t o r i e s , c e r t a i n aspects o f t h e i r experience were expressed more p a s s i o n a t e l y , acknowledgement as they p r o v i d e e x p e r i e n c e of c a r e g i v e r s t r e s s .  warranting  further i n s i g h t i n t o the C o n s i s t e n t w i t h the t h e o r e t i c a l  framework, strong emphasis on t h e importance of f a m i l y members f o r support was made by each respondent.  While f r i e n d s as  support and r e l i g i o n as a source o f s t r e n g t h were mentioned, r e l i a n c e on other  f a m i l y members ( i e . spouses, a d u l t c h i l d r e n ,  s i b l i n g s ) f o r emotional and i n s t r u m e n t a l  a s s i s t a n c e was  pervasive.  I n t e r e s t i n g l y , of the e i g h t respondents,  only  two  c a r e g i v e r s u t i l i z e d formal supports such as homemaking h e l p , r e i n f o r c i n g r e l i a n c e on themselves  and other f a m i l y members t o  meet the c a r e r e c e i v e r s ' and t h e i r own  needs.  This i s consistent  w i t h the l i t e r a t u r e as s t u d i e s c i t e h i g h percentages  of c a r e t o  the e l d e r l y being p r o v i d e d by f a m i l y members (Brubaker Brubaker,  1992;  C h a p p e l l , 1990).  Although not developed r e p o r t s , two  i n t o themes due t o too i n f r e q u e n t  remarks each made by d i f f e r e n t respondents  noteworthy and r e l e v a n t t o c a r e g i v e r s t r e s s . respondents  &  First,  are  the  presented a sense of coiranitment t o the c a r e r e c e i v e r  and t h e i r c a r e g i v i n g r o l e , p l a c i n g the c a r e r e c e i v e r ' s needs f i r s t and then accommodating t h e i r own  lives.  While  such a  commitment o f t e n r e s u l t e d i n d r a s t i c l i f e s t y l e changes and a f f e c t e d them p h y s i c a l l y , s o c i a l l y and e m o t i o n a l l y , a sense of duty and o b l i g a t i o n p r e v a i l e d . made by respondents experience.  Another i n t e r e s t i n g comment  was  as they d e s c r i b e d t h e i r c a r e g i v i n g  Respondents r e f e r r e d t o the e x i s t e n c e of stages or  c y c l e s of c a r e g i v i n g , commenting on the process of c a r e g i v i n g l e a r n i n g how  t o p r o v i d e c a r e and how  —  t o cope, f e e l i n g uneasy and  unsure and then g a i n i n g experience and c o n f i d e n c e , moving onto acceptance  and c r e a t i n g new  ways of l i v i n g , a n t i c i p a t i n g f u t u r e  changes and a l t e r i n g e s t a b l i s h e d r o u t i n e s as c a r e needs change. Both comments —  the sense of commitment i n p r o v i d i n g c a r e and  the p r o c e s s of c a r e g i v i n g i t s e l f type of s t r e s s appears  —  suggest t h a t some amount and  t o be i n h e r e n t i n the c a r e g i v i n g  experience.  T h i s f i n d i n g , which i s supported i n the  (Abel, 1990), must be r e c o g n i s e d intervention with family Perceived The  Stress  when examining the e f f e c t s of  Scale —  scores  i n d i c a t i n g no  s i g n i f i c a n t change i n p e r c e i v e d  respondents as a group —  s t r e s s among  are c o n s i s t e n t w i t h other  show t h a t t i m e - l i m i t e d p s y c h o e d u c a t i o n a l support have modest t h e r a p e u t i c et  a l . , 1990;  The may  an  caregivers.  f i n d i n g s from the PSS  statistically  literature  studies that  interventions  benefits with respect to stress (Beigel  Toseland & R o s s i t e r , 1989;  Z a r i t & Toseland, 1989).  l a c k of s i g n i f i c a n t change i n the respondents' s t r e s s l e v e l be r e l a t e d t o the s e l f - s e l e c t e d sample i n t h a t some  p a r t i c i p a n t s i n the group may  have been l e s s d i s t r e s s e d  and  t h e r e f o r e l e s s l i k e l y t o experience changes i n terms of s t r e s s as a r e s u l t of the i n t e r v e n t i o n program.  Despite  problems  a s s o c i a t e d w i t h c a r e g i v i n g , not a l l c a r e g i v e r s s u f f e r high l e v e l s of s t r e s s ( M c C a l l i o n et a l . , 1994)  and  some seek a s s i s t a n c e  to  l e a r n about a l t e r n a t i v e s i n the event t h e i r s i t u a t i o n should become worse ( Z a r i t & Toseland, 1989). of s t r e s s o r s needs t o be c o n s i d e r e d expectations intervention.  As w e l l , the c h r o n i c i t y  i n conjunction  with  of changes t h a t can reasonably occur w i t h a b r i e f There i s a growing f e e l i n g t h a t a t i m e - l i m i t e d  group of l e s s than 12 weeks i s too b r i e f a p e r i o d t o demonstrate s i g n i f i c a n t e f f e c t s (Brown, Cook & Magwood, 1993; al.,  1991).  Whitlatch  et  F i n a l l y , the r e p o r t e d minimal change i n p e r c e i v e d  s t r e s s by the respondents d u r i n g the i n t e r v i e w may  be r e l a t e d t o  a tendency f o r f a m i l y c a r e g i v e r s t o underreport s t r e s s on measures ( Z a r i t & Toseland, As presented, ranged from 21-33  i n d i c a t e the  with the t h r e e h i g h e s t scores  each of which were spouses.  scores  (average between  t o Respondents 1, 5 and  T h i s f i n d i n g i s c o n s i s t e n t with  l i t e r a t u r e which s t a t e s h i g h e r l e v e l s of s t r e s s are r e p o r t e d spouses than other f a m i l y c a r e g i v e r s ( M i l l e r , Folkman (1984) c i t e evidence  of  1989).  the f i n d i n g s from the PSS  p r e - and post-group scores) belonging  the experience  1989).  8, the by  Lazarus &  t h a t the g r e a t e r the s t r e n g t h of  s a t i s f a c t i o n , the more v u l n e r a b l e an i n d i v i d u a l i s t o p s y c h o l o g i c a l s t r e s s i n the area of t h a t commitment. f i n d i n g might suggest a p o s i t i v e connection  This  between  c a r e g i v e r / c a r e r e c e i v e r r e l a t i o n s h i p or involvement and suggestion  stress, a  a l s o echoed i n the t h e o r e t i c a l framework.  L i n k i n g the F i n d i n g s from the Interview Data and  PSS  Combining the f i n d i n g s from the i n t e r v i e w s w i t h the f i n d i n g s from the PSS  allows f o r f u r t h e r i n t e r p r e t a t i o n of the  results.  While respondents' d u r i n g the i n t e r v i e w s t a t e d minimal or  no  change i n t h e i r s t r e s s as a r e s u l t of p a r t i c i p a t i n g i n the support  group, f i n d i n g s from the PSS  i n d i c a t e t h a t some  i n d i v i d u a l scores d i d i n f a c t i n c r e a s e and decrease  slightly.  As an e x p l a n a t i o n t o account f o r the d i s c r e p a n c i e s between the i n t e r v i e w s and PSS  f o r those  individuals,  one might c o n s i d e r  f a c t t h a t the p o i n t change f o r each i n d i v i d u a l respondent s m a l l and l i k e l y not s i g n i f i c a n t enough f o r respondents t o p e r c e i v e a f e l t change i n t h e i r s t r e s s as a r e s u l t of  was  the  p a r t i c i p a t i n g i n the group.  Another e x p l a n a t i o n may be t h a t w i t h  the time l a p s e between completion of the PSS and t h e i n t e r v i e w , r e c o l l e c t i o n o f the e f f e c t s of the group may be l e s s a c c u r a t e . S i m i l a r l y , d u r i n g the time l a p s e , the respondents  continued i n  t h e i r c a r e g i v i n g r o l e , s u b j e c t e d t o occurrences which may have i n f l u e n c e d t h e i r p e r c e p t i o n of s t r e s s and the e f f e c t of the group experience. O v e r a l l , the r e s u l t s noted from t h e PSS i n d i c a t e some respondents same.  r e p o r t e d s l i g h t i n c r e a s e s , decreases o r remained the  While p a r t i c i p a t i o n i n the group may c e r t a i n l y have  c o n t r i b u t e d t o t h e r e s u l t s , these f i n d i n g s can probably best be understood  i n c o n j u n c t i o n w i t h the i n t e r v i e w data and from the  p e r s p e c t i v e s of the s t r e s s process and the r o l e of i n d i v i d u a l and situational variables.  Each f o r c e s a t t e n t i o n on t h e  r e l a t i o n s h i p s among the many c o n d i t i o n s l e a d i n g t o c a r e g i v e r s t r e s s , the way these r e l a t i o n s h i p s change over time, and an i n d i v i d u a l ' s c o g n i t i v e a p p r a i s a l of the s i t u a t i o n . E v a l u a t i o n Form The  f i n d i n g s from the e v a l u a t i o n form r e v e a l comments t h a t  are s i m i l a r t o t h e themes i d e n t i f i e d i n the i n t e r v i e w data w i t h r e s p e c t t o t h e group experience changes t h a t have r e s u l t e d ) .  ( i e . supportive, informative,  D e s p i t e the q u e s t i o n s on the form  not d i r e c t l y adhering t o t h e i n t e r v i e w guide and being unable t o l i n k each respondents'  i n t e r v i e w data w i t h h i s / h e r e v a l u a t i o n  form, t h i s f i n d i n g i n c r e a s e s t h e v a l i d i t y of the study.  Of  i n t e r e s t , w h i l e r e s u l t s i n d i c a t e p a r t i c i p a t i o n i n the support  group d i d not change respondents' p e r c e i v e d l e v e l of s t r e s s v e r b a l l y o r as recorded on the PSS, the respondents d i d r e p o r t a s t r o n g sense of s a t i s f a c t i o n w i t h the group both on the e v a l u a t i o n form and i n the i n t e r v i e w s . i n f l u e n c e on t h i s f i n d i n g . the  S e v e r a l p o i n t s bear  The respondents may  be s a t i s f i e d w i t h  group f o r reasons t h a t have nothing t o do w i t h f e l t  in stress  (Biegel et a l . ,  1991).  changes  For i n s t a n c e , they may  have  f e l t g r a t e f u l someone p a i d a t t e n t i o n t o t h e i r needs and showed i n t e r e s t i n t h e i r problems.  They may  a l s o have f e l t  positive  about t h e group experience because they v a l u e the o r g a n i z a t i o n s p o n s o r i n g the group and/or s t a f f working w i t h the group.  Summary The  data and  a n a l y s i s of the i n t e r v i e w s , PSS  form y i e l d e d the themes and  and  evaluation  stages which c o n t r i b u t e d t o  the  development of a c o n c e p t u a l i z a t i o n of c a r e g i v e r s t r e s s and  the  e f f e c t s of support group involvement on the experience of s t r e s s . Presentation  and d i s c u s s i o n of the c o n c e p t u a l i z a t i o n  i l l u s t r a t e s the u s e f u l n e s s  (Figure  4)  of the study's f i n d i n g s i n  understanding group work as an i n t e r v e n t i o n and  i t s r o l e i n the  c a r e g i v i n g experience. Consistent  w i t h the l i t e r a t u r e , the r e s u l t s suggest t h a t  c a r e g i v e r s t r e s s must not be thought of as an event but as a mix  of circumstances and  caregivers  one  ( P e a r l i n et a l . , 1990).  with supportive  that varies considerably Further,  supplying  caregivers  caregiver  Regardless of r e s u l t s which prove an i n c r e a s e  or  decrease i n c a r e g i v e r s t r e s s f o l l o w i n g group i n t e r v e n t i o n , must be m i n d f u l  of the needs of c a r e g i v e r s and  recognize  (Abel, 1990;  Toseland e t a l . , 1990).  we  the many  p o t e n t i a l b e n e f i t s of group i n t e r v e n t i o n other than s t r e s s reduction  among  r e l a t i o n s h i p s through support groups does not  ensure they w i l l f e e l changes i n t h e i r experience of stress.  instead  Chapter Seven Conclusions,  Implications  and Recommendations  Introduction The purpose of t h i s study was t o examine the e f f e c t s of a s h o r t - t e r m support group on s t r e s s of f a m i l y c a r e g i v e r s of h o s p i t a l i z e d e l d e r l y , and t o p r o v i d e d e s c r i p t i v e i n f o r m a t i o n the c a r e g i v i n g e x p e r i e n c e .  Conclusions,  work p r a c t i c e and recommendations  on  implications f o r social  f o r further research  are  presented i n t h i s chapter. Conclusions T h i s study has c o n t r i b u t e d  t o the e x i s t i n g knowledge  w i t h i n the f i e l d of c a r e g i v i n g , addressing l i t e r a t u r e with respect  the p a u c i t y  base  i n the  t o the e f f e c t s of group i n t e r v e n t i o n s  on  s t r e s s with family caregivers  i n the h o s p i t a l s e t t i n g .  Caregiver  ( B i e g e l e t a l . , 1991) presented i n  S t r e s s - C o p i n g Model  The  Chapter Three, i n combination w i t h f a m i l y systems t h i n k i n g , s t r e s s t h e o r y and group work theory, provided  a framework t o  o r g a n i z e the f i n d i n g s , t o understand the i n d i v i d u a l i z e d m u l t i f a c t o r e d c a r e g i v i n g experience, and t o f a c i l i t a t e the conceptualization  of the e f f e c t s of support group  on s t r e s s i n the c a r e g i v i n g The c o n c e p t u a l i z a t i o n  interventions  experience. contributes  Coping Model as i t i n t r o d u c e s  t o the C a r e g i v e r  Stress-  support group work as an  i n t e r v e n t i o n and i l l u s t r a t e s the ways i n which the i n t e r v e n t i o n can p o t e n t i a l l y e f f e c t the c a r e g i v e r and t h e i r experience o f  stress.  I t i s an i n t e r a c t i v e model as each stage generates the  next one and r e l a t e s back t o p r e v i o u s stages.  The model  i d e n t i f i e s i n d i v i d u a l d i f f e r e n c e s as a v a r i a b l e which i n f l u e n c e s the e n t i r e c a r e g i v i n g  experience.  A word most a c c u r a t e l y d e s c r i b i n g f a m i l y c a r e g i v e r s i s heterogeneity.  Although c e r t a i n t r e n d s c h a r a c t e r i z e them as a  group ( i e . mostly spouses and a d u l t c h i l d r e n ) and c e r t a i n themes describe  the c a r e g i v i n g e x p e r i e n c e ( i e . demanding, time  consuming, rewarding), d i f f e r e n c e s abound.  Caregiving  i s an  i n d i v i d u a l i z e d experience and i s a process o c c u r r i n g over time w i t h s t r e s s being a normative component i n the experience and process.  As demonstrated, c a r e g i v i n g i s i n f l u e n c e d by key  c h a r a c t e r i s t i c s of the c a r e g i v e r , care r e c e i v e r and the s i t u a t i o n and  the e f f e c t s are threaded throughout the s t r e s s p r o c e s s . T h i s study has a l s o c o n t r i b u t e d  research  t o the e x i s t i n g models of  methodology by demonstrating the u t i l i t y of combining  researcher  and p r a c t i t i o n e r r o l e s as w e l l as q u a l i t a t i v e and  q u a n t i t a t i v e methods of data c o l l e c t i o n .  The v a l u e of the study  d e s i g n i n c l u d i n g both q u a l i t a t i v e and q u a n t i t a t i v e components i s observed as the f i n d i n g s of each complement and c o r r o b o r a t e other.  the  I t i s b e l i e v e d t h a t t h i s added v a l i d i t y t o the study.  The d e s i g n p r o v i d e d  d i f f e r e n t perspectives  of the same r e a l i t y ,  a f f o r d i n g i d e n t i f i c a t i o n and r e i n f o r c e m e n t of a s i g n i f i c a n t finding —  the importance of i n d i v i d u a l d i f f e r e n c e s i n t h e  caregiving  experience.  while the r i s k of b i a s was  present,  b l e n d i n g the r o l e s of r e s e a r c h e r significant. researcher  the advantages of  and p r a c t i t i o n e r are  Recruitment procedures were l e s s onerous as  had d i r e c t access  t o p o t e n t i a l respondents.  the  Being  f a m i l i a r w i t h the problem area f a c i l i t a t e d the q u a l i t a t i v e i n t e r v i e w process i n t e r v i e w guide,  as the r e s e a r c h e r  the  focus the i n t e r v i e w s and perhaps grasp meaning  more f u l l y upon a n a l y s i s . r e s e a r c h e r was  could better design  The  s o c i a l work background of  a l s o b e n e f i c i a l as a balance was  the  s t r u c k between  the p r i n c i p l e s of r i g o r o u s i n v e s t i g a t i o n and a n u r t u r i n g concern f o r respondent  welfare.  As the aging process  continues  and as d i s e a s e  progresses,  c a r e needs of the c a r e r e c e i v e r are l i k e l y t o i n c r e a s e . L o g i c a l l y , the h e a l t h of an aging r e l a t i v e i s beyond the i n f l u e n c e of group i n t e r v e n t i o n and t h e r e f o r e i t i s not unreasonable t o d i s c o v e r t h a t c a r e g i v e r s t r e s s does not always decrease because of such i n t e r v e n t i o n s (Toseland, Labrecque, 1989).  Rossiter &  However, based on the presented  literature  review and the f i n d i n g s of t h i s study, many worthwhile b e n e f i t s are d e r i v e d from support caregivers.  group i n t e r v e n t i o n s f o r f a m i l y  F e e l i n g supported and not i s o l a t e d ,  i n f o r m a t i o n and education  on p r o v i d i n g c a r e , and  gaining l e a r n i n g how  cope are t o o l s t h a t a s s i s t c a r e g i v e r s i n f u l f i l l i n g demanding and v a l u a b l e r o l e .  Enabling  to  their  family caregivers i n t h e i r  e f f o r t s a l s o serves the h e a l t h care system, c o n t r i b u t i n g t o a decrease i n c a r e g i v e r i l l n e s s and i n h o s p i t a l and  institutional  c a r e of c a r e r e c e i v e r s . r e s t r a i n t s and  In l i g h t of government f i n a n c i a l  fewer p r o f e s s i o n a l t o d e l i v e r s e r v i c e ,  support  groups are a u s e f u l i n t e r v e n t i o n m o d a l i t y i n meeting the needs of the many c a r e g i v e r s  who  require  Implications The  f i n d i n g s of the  intervention  attention.  f o r S o c i a l Work P r a c t i c e  study g i v e c r e d i b i l i t y t o p l a n n i n g  strategies that o f f e r tangible assistance  emotional support t o c a r e g i v e r s . and  public p o l i c y perspective,  From both a c l i n i c a l  s o c i a l work has  developing e f f e c t i v e interventions The  implications  f o r s o c i a l work p r a c t i c e .  •  The  practice  a role in  t o meet the needs of  caregivers.  Clinical  and  f i n d i n g s from t h i s study suggest the  following  Practice  model, w i t h i t s emphasis on i n d i v i d u a l d i f f e r e n c e s ,  forces  s o c i a l workers t o look more c l o s e l y a t the members coming i n t o the group, be aware of what t h e i r needs are, and  attend  needs by t r y i n g t o i d e n t i f y common ground among the members.  The  t o those  group  model f u r t h e r i n f l u e n c e s p r a c t i c e as i t i l l u s t r a t e s  p o t e n t i a l areas t o be e f f e c t e d by the group p r o c e s s , d i r e c t i n g program c o n t e n t . •  As c a r e g i v e r s  support groups may  have d i f f e r e n t needs and  • was  caregiver  be more e f f e c t i v e by t a r g e t i n g s p e c i f i c  subgroups w i t h i n the c a r e g i v e r c h i l d r e n , men  issues,  or women) and  population  designing  For the purpose of the r e s e a r c h h e l d p r i o r t o the  ( i e . spouses,  content  study,  adult  accordingly.  a pre-group meeting  s t a r t of the c a r e g i v e r  support group  program.  The meeting allowed t h e group l e a d e r the o p p o r t u n i t y t o  b e g i n t o a s s e s s i n g p a r t i c i p a n t s ' needs as w e l l as p r o v i d e d p a r t i c i p a n t s w i t h the o p p o r t u n i t y t o meet one another  (decrease  a n x i e t i e s ) and t o be i n v o l v e d i n t h e p l a n n i n g of t h e content.  As  the meeting was s u c c e s s f u l a t f o s t e r i n g a sense o f comfort and support p r i o r t o the group program, such pre-group meetings should be b u i l t •  i n t o the program.  Informal c o n t a c t w i t h respondents  o c c u r r e d f o l l o w i n g the study  and w h i l e o b v i o u s l y not s c i e n t i f i c a l l y measured, an i n d i c a t i o n o f t h e i r ongoing needs was p r e s e n t . itself,  Given the process o f c a r e g i v i n g  a maintenance s t r a t e g y ( i e . monthly meetings, a c a r e g i v e r  buddy system, f a c i l i t a t i o n o f p e e r - l e d / s e l f - h e l p meetings) should be c o n s i d e r e d f o l l o w i n g the c e s s a t i o n o f t h e group program. •  Support  groups a r e simply one l i n k i n the c h a i n o f a c t i v i t i e s  to  assist caregivers.  Depending on the types o f problems f a c i n g  a c a r e g i v e r , i n d i v i d u a l i n t e r v e n t i o n may be more a p p r o p r i a t e o r r e q u i r e d as w e l l .  Group work does not r e p l a c e i n d i v i d u a l  c o u n s e l l i n g as i t cannot address t h e v a r i e d concerns  and problems  caregivers face. •  Recruitment  o f p a r t i c i p a n t s / r e s p o n d e n t s f o r the  group/study  r a i s e d a l o g i s t i c a l problem, one t h a t i s l i k e l y o f t e n overlooked yet  c r i t i c a l to caregivers.  C a r e g i v e r s who a r e p r o v i d i n g c a r e  24 hours/day have d i f f i c u l t y a t t e n d i n g support groups. of  The i s s u e  care f o r t h e c a r e r e c e i v e r t o enable c a r e g i v e r s t o a t t e n d  support groups needs t o be addressed  ( i e . day c a r e programs,  homemakers, v o l u n t e e r s ) and e f f o r t s are r e q u i r e d t o i d e n t i f y the  b e s t p o s s i b l e time and  l o c a t i o n f o r caregivers to attend  support  group programs. Public Policy Unfortunately  Canadian s o c i a l p o l i c y appears t o r e s t  somewhat on the ethos of i n d i v i d u a l r e s p o n s i b i l i t y f o r s o c i a l problems and climate.  i s very v u l n e r a b l e t o s h i f t s i n the economic  With r e s p e c t t o the c a r e of the e l d e r l y ,  considered  the l o g i c a l source f o r a s o l u t i o n .  f a m i l y support support for  In order f o r  t o be p r a c t i c a l , t h e r e i s a need f o r  s e r v i c e s f o r o l d e r a d u l t s and  them beyond c a r e g i v e r support  the f a m i l y i s  formal  f o r f a m i l y members who  groups.  Support groups need t o  be thought of as a supplemental measure, not as an end themselves.  Findings  from the study i n d i c a t e formal  were not used by c a r e g i v e r s t o any study, one  care  i n and  supports  s i g n i f i c a n t extent.  From t h i s  can o n l y s p e c u l a t e t h i s might be r e l a t e d t o  e l i g i b i l i t y c r i t e r i a or i n s u f f i c i e n t s e r v i c e s a v a i l a b l e . R e g a r d l e s s of the reasons, fewer supports a v a i l a b l e or used by f a m i l y c a r e g i v e r s means a g r e a t e r r e l i a n c e on themselves. Advocacy i s r e q u i r e d t o i n c r e a s e v a r i o u s forms of support c a r e g i v e r s such as m a t e r i a l homemaking and placement.  (equipment) and  to  financial aid,  r e s p i t e s e r v i c e s i n the home, and  temporary  E f f o r t s are a l s o needed t o r a i s e the v i s i b i l i t y  c a r e g i v e r s and the value of t h e i r c o n t r i b u t i o n s .  of  of  Recommendations f o r F u r t h e r  Research  T h i s study has o n l y begun t o examine c a r e g i v e r support group programs i n the h o s p i t a l s e t t i n g and f u r t h e r r e s e a r c h i s recommended.  One  area r e q u i r i n g a t t e n t i o n i s on s p e c i f i c sub-  groups of c a r e g i v e r s i n order t o i d e n t i f y s i m i l a r i t i e s and/or d i f f e r e n c e s and p o t e n t i a l v a l u e i n o f f e r i n g sub-group s p e c i f i c support groups.  Future r e s e a r c h endeavors should a l s o  i n v e s t i g a t e important outcomes o t h e r than s t r e s s r e d u c t i o n such as improving c o p i n g s k i l l s , p r e v e n t i n g d e p r e s s i o n , and i n c r e a s e s in  c a r e g i v e r support systems.  S i m i l a r l y , research investigating  the e f f e c t s or e f f e c t i v e n e s s of group i n t e r v e n t i o n s should i n c o r p o r a t e measures t h a t take i n t o account the goals t h a t c a r e g i v e r s have f o r themselves. to  have r e c e i v e d l i t t l e  F i n a l l y , an area which  appears  a t t e n t i o n y e t i s c e n t r a l t o the  c a r e g i v i n g experience i s w i t h the c a r e r e c e i v e r s themselves. Perhaps a b e t t e r understanding  of t h e i r r o l e i n the c a r e g i v i n g  r e l a t i o n s h i p would h e l p guide f u t u r e i n t e r v e n t i o n s w i t h caregivers. Advances i n medicine  and modern technology have been  s u c c e s s f u l i n adding years t o l i f e .  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S o c i a l work groups i n h e a l t h s e t t i n g s : Promises and problems. In K.W. Davidson & S.S. C l a r k e (Eds.), S o c i a l work i n h e a l t h care s e t t i n g s : A handbook f o r practice P a r t 1 (pp. 457-476). New York: The Haworth Press. Patton, M. (1990). Newbury Park:  Q u a l i t a t i v e e v a l u a t i o n and r e s e a r c h methods. Sage P u b l i c a t i o n s .  P e a r l i n , L . I . , Mullan, J.T., Semple, S.J., & S k a f f , M.M. (1990). C a r e g i v i n g and the s t r e s s p r o c e s s : An overview of concepts and t h e i r measures. The G e r o n t o l o g i s t , 30.(5), 583-594. P e t e r s o n , K.J., & Anderson, S.C. (1984). E v a l u a t i o n of s o c i a l work p r a c t i c e i n h e a l t h c a r e s e t t i n g . In K.W. Davidson & S.S. C l a r k e (Eds.), S o c i a l work i n h e a l t h c a r e s e t t i n g s : A handbbok f o r p r a c t i c e P a r t 1 (pp. 245-267). New York: The Haworth P r e s s . Popky-Hausman, C. (1979). Short-term c o u n s e l l i n g groups f o r people w i t h e l d e r l y p a r e n t s . The G e r o n t o l o g i s t , 1^(1), 107.  102-  P r o f i t t , C.J., Bryne, M.E., Namie, S., King, M.O., Schmidt, S., & B r o t t , T.G. (1993). The nurse c l i n i c i a n : Role c o n f l i c t i n r e s e a r c h . C l i n i c a l Nurse S p e c i a l i s t , Z ( 6 ) , 309-311. Rankin, E.D. (1990). C a r e g i v e r s t r e s s and the e l d e r l y : A f a m i l i a l p e r s p e c t i v e . J o u r n a l of G e r o n t o l o g i c a l S o c i a l Work, 15, 57-73. R e i d , W.J., York:  & Smith, A.D. (1981). Columbia P r e s s .  Research i n s o c i a l work.  New  Robinson, B., & Thurnher, M. (1979). Taking c a r e of aged parents: A family l i f e cycle t r a n s i t i o n . The G e r o n t o l o g i s t . 19(6), 586-593. Robinson, C.A., & Thorne, S.E. (1988). Dilemmas of e t h i c s and v a l i d i t y i n q u a l i t a t i v e n u r s i n g r e s e a r c h . Canadian J o u r n a l of N u r s i n g Research, 20.(1) f 65-76. R u t c h i c k , I.E. (1990). Research on p r a c t i c e w i t h groups i n health care s e t t i n g s . S o c i a l Work i n H e a l t h Care, 15(1), 97-114. Simon, E. (1991). Research f o r the r e s e a r c h phobic: Developing r e s e a r c h e x p e r t i s e i n h o s p i t a l s o c i a l work. H e a l t h and S o c i a l Work. 16(2), 118-122. S t a t i s t i c s Canada Census (1986). Shanas, E. (1979). S o c i a l myth as h y p o t h e s i s : The case of the f a m i l y r e l a t i o n s of o l d people. The G e r o n t o l o g i s t . 19. 3-9. S i n g e r , J.E., & Davidson, L.M. (1991). S p e c i f i c i t y and s t r e s s research. In A. Monat & R.S. Lazarus (Eds.), S t r e s s and c o p i n g : An anthology (pp. 36-47). New York: Columbia University Press.  r S t o l a r , G.E., MacEntee, M., & H i l l , P. (1993). The e l d e r l y : T h e i r p e r c e i v e d supports and r e c i p r o c a l b e h a v i o r s . Journal of G e r o n t o l o g i c a l S o c i a l Work, 11(3/4), 15-33. S t o l l e r , E.P. (1983). P a r e n t a l c a r e g i v i n g by a d u l t c h i l d r e n . J o u r n a l of Marriage and the Family. 42, 9-15. S t r a u s s , A.L. (1987). Q u a l i t a t i v e a n a l y s i s f o r s o c i a l scientists. Cambridge: Cambridge U n i v e r s i t y P r e s s . T o s e l a n d , R.W. (1990). Long-term e f f e c t i v e n e s s of p e e r - l e d and p r o f e s s i o n a l l y l e d support groups f o r c a r e g i v e r s . Social S e r v i c e Review. 64(2), 308-327. T o s e l a n d , R.W., R o s s i t e r , CM., Peak, T., & Smith, G.C (1990). Comparative e f f e c t i v e n e s s of i n d i v i d u a l and group i n t e r v e n t i o n s t o support f a m i l y c a r e g i v e r s . S o c i a l Work. 35(3), 209-217. T o s e l a n d , R.W., & Rossiter, CM. (1989). Group i n t e r v e n t i o n s t o support f a m i l y c a r e g i v e r s : A review and a n a l y s i s . The G e r o n t o l o g i s t . 29(4), 438-448. T o s e l a n d , R.W., R o s s i t e r , CM., & Labreque, M.S. (1989). The e f f e c t i v e n e s s of t h r e e group i n t e r v e n t i o n s t r a t e g i e s t o support f a m i l y c a r e g i v e r s . American J o u r n a l of O r t h o p s y c h i a t r y . 59(3), 420-429. T u r n b u l l , J.G., S a l t z , C C , & Gwyther, L.P. (1988). A p r e s c r i p t i o n f o r promoting s o c i a l work r e s e a r c h i n a u n i v e r s i t y h o s p i t a l . Health and S o c i a l Work. 13(2). W h i t l a t c h , C.J., Z a r i t , S.H., & von Eye, A. (1991). interventions with c a r e g i v e r s : A r e a n a l y s i s . G e r o n t o l o g i s t . 31(1), 9-14.  E f f i c a c y of The  Whyte, W. (1982). I n t e r v i e w i n g i n f i e l d r e s e a r c h . In Burgess (Ed.), F i e l d Research: A source book and manual (pp.111-122). Boston: G . A l l e n & Unwin.  R.G. field  Z a r i t , S., Anthony, C , & B o u t s e l i s , M. (1987). Interventions w i t h c a r e g i v e r s of dementia p a t i e n t s : A comparison of two approaches. Psychology and Aging. 2, 225-234. Z a r i t , S.H., Toseland, R.W. (1989). Current and f u t u r e , d i r e c t i o n s i n family caregiving research. The G e r o n t o l o g i s t . 29(4), 481-483.  VIDEO;  "When The Day Comes" NatiCTial Film Board, 1991 (28 minutes)  The video presents four women each doing their best to tend to an elderly loved one. Their stories show how constant caregiving takes its t o l l . Fatigue, depression and isolation are identified as ccmnon syiriptoms and issues related to the general caregiving experience are explored. The video illustrates the urgent need to inprove and expand government services.  HMTOOOTS; Week 1  'Suggested positive and negative aspects of a caregiver's task •Changes to be achieved  Week 2  •Thermometers of caregiving Social manifestations of burnout Physical manifestations of biimout Bnnotional manifestations of burnout Self-denial aspects of burnout •Beliefs and values •Carmon sense approaches to managing stress  Week 3  «Caring for yourself •Family plan for delegation  Week 4  'Strengths and weaknesses in one's conmmication •Characteristics of bad ccnrnunication •Do's & Don'ts of health comiïtunication •How do you cope with anger •Recognition and management of anger •How to help a friend or loved one •Tips for dealing with an older adult at home • Increasing your relative's safety at home •Legal issues •Relaxation techniques •Resource information •Reading l i s t - Books on caregiving  The University of British Columbia Office of Research Services APPENDIX Behavioural Sciences Screening Committee for Research Involving Human Subjects  Certificate of Approval PRINCIPAL INVESTIGATOR  DEPARTMENT  Stolar, G.E.  Social Work  NUVEE?  B93-0786  INSnTUTlCN(S) W H E R E R E S E A R C H WILL B E CARRIED OUT  UBC. Campus CO-INVESTIGATORS:  Book, E.; Social Work SPONSORING AGENCIES  TTTLEl  A course for caregivers: Group work as an intervention vôth family caregi APPROVAL DATE  J A N 11i 1994  TERMCTEARS)  iitalized  AMENDFa  3  CERTIRCATKDN:  The protocol describing the above-named project has been reviewed by the Committee and the experimental procedures were found to be acceptable on ethical grounds for research involving human subjects.  DrTKC^He^^^ Dr. I. Franks, Associate Chairs  y D/. R. D.Spratle/ ( / ^ Director, Research Services  This Certificate of Approval is valid for the above term provided there is no change in the experimental procedures  ^ i f HOLY  i l lAMILYHOSPimL Specializing in Geriatric Rehabilitation  September 27, 1993  To Whom I t May Concern: H o l y F a m i l y H o s p i t a l acknowledges t h e current enrolment o f E l a i n e Book i n t h e Master o f S o c i a l Work degree program a t t h e U n i v e r s i t y of B r i t i s h Columbia. E l a i n e Book's r e s e a r c h proposal on the caregiver support group program has been reviewed and i s supported as presented by Ms. Book. P e n d i n g a p p r o v a l by the ' U n i v e r s i t y of B r i t i s h Columbia E t h i c s Committee, Holy Family H o s p i t a l v i l l permit t h e r e s e a r c h t o be c a r r i e d o u t a t t h i s f a c i l i t y . The Research Committee w i l l r e q u i r e Ms. Book t o o b t a i n informed consent from each p a r t i c i p a n t . We a r e p l e a s e d t o a s s i s t Ms. Book i n her research  Dr. I.V Tsang C h a i r , R e s e a r c h Committes Holy F a m i l y H o s p i t a l  endeavour.  President Holy Family H o s p i t a l  Specializing in Geriatric Rehabilitation January 4, 1994  Dear:  Having a relative or friand i n hospital can often be a confusing and stressful time. For this reason, the Social Work Department at Holy Family Hospital i s offering a four week "Course for Caregivers". We would like to invite you to attend as irany sessions as possible and to bring with you any concerns or questions.  WHEN:  Tuesdays, Jantiary 25, February 1, 8 and 15  TIME:  4:30 to 6:00 p.m.  WHERE:  Holy Family Hospital, Education Roan Level I  WHO IS INVITED:  Families and friends of rehabilitation patients (Patients will not attend)  WHAT ARE WE TALKING ABODT: January 25  The Caregiver Role  February 1  Excuse my unusual behaviour - It's only stress  February 8  When is i t my time?  February 15  Healthy Corrnunication  Caring for yourself  As space i s 1 Lilted, please register by contacting Elaine Book at 321-2651. Also, attached i s a letter with details of a study on caregivers which we will be conducting. If you have any questions, please feel free to contact \:is.  Elaine Book, BSW 321-2661, local 353  7Rni Ar<T,.U Ç>r=o> \r  Dianne Watt, MSW 321-2661, local 348  I3^1_--U  V5T>-=Ti T--,  THE  U N I V E R S I T Y OF BRITISH  COLUMBIA  APPENDIX E  School of Social Work 2080 W«t Mall Vancouver, B.C. Canada V6T 1Z2 Tel: (604) 822-2255  Fax: (604) 822-8656  Dear  My name i s E l a i n e Book. I am a graduate student U n i v e r s i t y of B r i t i s h CoiuiTibia, School of Social Work.  at  the  I would l i k e t o i n v i t e you to p a r t i c i p a t e i n a research study s e e k i n g t o examine the e f f e c t s of p a r t i c i p a t i o n i n the "Course f o r C a r e g i v e r s " program at Holy Family H o s p i t a l . I am i n t e r e s t e d i n learning how p a r t i c i p a t i o n i n t h i s group program has impacted your l i f e as a caregiver. The purpose of t h i s study i s t o b e t t e r understand your experience which w i l l h e l p improve our knowledge and services i n t h i s area. The research will be conducted by completing two q u e s t i o n n a i r e s and an interview which w i l l take approximately two hour of your time. Interviews w i l l be audiotaped to ensure a c c u r a c y and w i l l be erased upon completion of t h i s p r o j e c t . ' A l l identifying information will be held i n confidence by t h e r e s e a r c h e r and i d e n t i f i a b l e i n d i v i d u a l responses w i l l not appear i n the f i n a l r e p o r t . Your p a r t i c i p a t i o n i n t h i s project i s completely v o l u n t a r y . You may choose to withdraw at any time, and/or may choose not t o answer any q u e s t i o n . Your d e c i s i o n to p a r t i c i p a t e w i l l i n no way a f f e c t s e r v i c e s you may be receiving now or i n the f u t u r e from Holy Family H o s p i t a l . W i t h i n t h r e e to four days of receiving this l e t t e r I w i l l c o n t a c t you by phone. Should you 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 i n the s t u d y , a b r i e f meeting w i l l be held on January 18 , 1954 p r i o r to t h e group beginning on January 25, 1994. Should you have any questions or wish to contact me, p l e a s e f e e l f r e e to c a l l me at 321-2551 or ir.v thesis advisor E l a i n e S t o l a r at 822-2277. Thank you f o r your  time.  Sincerely, ±0"7 E l a i n e Book  The q u e s t i o n n a i r e w i l l ask you about your f e e l i n g s and thoughts during the l a s t month. In each case, you w i l l be asked t o i n d i c a t e how o f t e n you f e L t or thought a c e r t a i n way. Although some of the questions a r e s i m i l a r , there are d i f f e r e n c e s between them and you should t r e a t each one as a separate q u e s t i o n . The best approach i s t o answer each question f a i r l y q u i c k l y . That i s , don't t r y to count up the number of times you f e l t a p a r t i c u l a r way, but r a t h e r i n d i c a t e the a l t e r n a t i v e that seems l i k e a reasonable estimate. For each q u e s t i o n , c i r c l e the number that corresponds with the following alternatives: 0 never 1 almost never 2 sometimes 3 f a i r l y often 4 very o f t e n 1.  In the l a s t month, how o f t e n have you been upset because of something that happened unexpectedly? 0 1 2 3 4  2.  In the l a s t month, how o f t e n have you f e l t that you were unable t o c o n t r o l the important things i n your l i f e ? 0 1 2 3 4  3.  In the l a s t month, how o f t e n have you f e l t nervous and "stressed"? 0 1 2 3 4  4.  In the l a s t month, how o f t e n have you d e a l t s u c c e s s f u l l y with i r r i t a t i n g l i f e hassles? 0 1 2 3 4  5.  In the l a s t month, how o f t e n have you f e l t that you were e f f e c t i v e l y coping with important changes that were o c c u r r i n g i n your l i f e ? 0 1 2 3 4  6.  In the l a s t month, how o f t e n have you f e l t c o n f i d e n t your a b i l i t y to handle your personal problems? 0 1 2 3 4  7.  In the l a s t month, how o f t e n have you f e l t t h i n g s were going your way? 0 1 2 3 4  8.  In the l a s t month, how o f t e n have you found that you could not cope with a l l the things that you had to do? 0 1 2 3 4  about  0 1 2 3 4  never almost never sometimes f a i r l y often very o f t e n  9.  In the l a s t month, how o f t e n have you been able to c o n t r o l i r r i t a t i o n s i n your l i f e ? 0 1 2 3 4  10.  In the l a s t month, how o f t e n have you f e l t that you were on top of things? 0 1 2 3 4  11.  In the l a s t month, how o f t e n have you been angered because of t h i n g s that happened that were outside of you c o n t r o l ? 0 1 2 3 4  12.  In the l a s t month, how o f t e n have you found y o u r s e l f about t h i n g s that you have to accomplish? 0 1 2 3 4  13.  In the l a s t month, how o f t e n have you been able to c o n t r o l the way you spend your time? 0 1 2 3 4  14.  In the l a s t month, how o f t e n have you f e l t d i f f i c u l t i e s were p i l i n g up so high that you could not overcome them? 0 1 2 3 4  Please day  record mo.  your b i r t h date as an i d e n t i f i c a t i o n  yr.  Thank you f o r your cooperation  and time.  code.  thinking  APPENDIX G INTERVIEW GUIDE  Can you t e l l me what the word 'caregiver' means to you?  Can you t e l l me about why you were interested in coming to the caregiver group? Probes: Difficulties you may be experiencing What are seme the d i f f i c u l t parts of your caregiving job? (physical demands, emotional stçport, long hours, decisions) How have you dealt with these difficulties? How did you think being a caregiver has affected you? (physically, socially, emotionally)  Can you t e l l me what i t was like being in the group? Informative, supportive, emotional, unsettling?  In what ways has being i n the group changed things for you? Probes: The d i f f i c u l t parts of your caregiving job? How you deal with these difficulties? How being a caregiver affects you since being i n the group? How are you coping?  PROFILES  YOUR RELATIVE'S PROFILE Your r e l a t i v e i s c u r r e n t l y : an i n - p a t i e n t at Holy Family H o s p i t a l an o u t - p a t i e n t at Holy Family H o s p i t a l a r e s i d e n t on the Extended Care U n i t l i v i n g i n the community Your r e l a t i v e has had: a stroke orthopedic other (please s p e c i f y )  surgery  an amputation  Your r e l a t i v e ' s age i s . Your r e l a t i v e i s male or female . Your r e l a t i v e ' s m a r i t a l s t a t u s i s : single married widowed divorced separated  YOUR PROFILE Your r e l a t i o n s h i p to the p a t i e n t : spouse adult c h i l d brother friend  other(please s p e c i f y ) .  Your age i s . Your gender i s male or female . Your m a r i t a l s t a t u s : single ^married widowed divorced separated The  l e n g t h of time you have been i n v o l v e d as a c a r e g i v e r i s : ^months years  The number of hours per day that you spend h e l p i n g , i n any way, your r e l a t i v e i s . Your employment s t a t u s : full-time part-time  Please day  not employed  r e c o r d your b i r t h date as an i d e n t i f i c a t i o n code mo. y r .  Thank you f o r your time and cooperation. I (i  retired  APPENDIX I  "A COURSE FOR CAREGIVERS" EVALUATION 1.  Please c i r c l e the nvmiber that best reflects your opinion of this program: 1 Disliked very much "A waste of time"  2 Disliked somewhat  3 Neutral not sxire  4 Liked somewhat  5 Liked very much "I learned a lot!"  2.  If you had a friend who was a caregiver, would you recoimend that he or she participate i n this program? Yes No Why or why not?  3.  Has this program changed the way you feel about caregiving? Why or why not?  4.  Will you do things differently as a result of participating i n this program? No Yes If so, what?  5.  Do you use anything you learned now? If so, what?  6.  No  Will you use anything you learned in the future? • If so, what?  Yes  No  Yes  No  Yes  7.  Which parts of the program would you like to see more time spent on?  8.  I f we have t o c u t s e n s t h i n g s c u t of t h i s program, what s h o u l d we c u t ?  General Ccnments: program.  We welccme any thoughts you would like to share about this  THE  U N I V E R S I T Y OF BRITISH  COLUMBIA  APPENDIX J  School of Social Work 2080 West Mall Vancouver, B.C. Canada V6T 1Z2 Tel: (604) 822-2255  Fax: (604) 822-8656  CONSENT FORM  For t h e Research P r o j e c t T i t l e d : A Course for Caregivers: Group Work as an I n t e r v e n t i o n with Family Caregivers of H o s p i t a l i z e d Elderly Researcher:. E l a i n e Book, B.S.W., H.S.W. (Candidate)  I . understand that the purpose of t h i s .study i s t o e v a l u a t e the group program i n which I am a p a r t i c i p a n t . Ï. understand t h a t p a r t i c i p a t i o n i n t h i s study involves the completion of two q u e s t i o n n a i r e s (one at the beginning of the program and one at t h e end, e a c h ' r e q u i r i n g f i v e minutes of my time) as well as an i n - p e r s o n i n t e r v i e w (approximately one hour) conducted by E l a i n e Book. I understand that my p a r t i c i p a t i o n i s completely voluntary and t h a t I may choose t o withdraw at any time from the study. Further, I consent t o t h e i n t e r v i e w being audiotaped and understand that the audiotape w i l l be erased upon completion of t h i s research p r o j e c t . A l l the i n f o r m a t i o n that I choose to provide w i l l be h e l d i n c o n f i d e n c e by the researcher. A l l i d e n t i f y i n g information w i l l be omitted i n t h e f i n a l report. Any services received from Holy F a m i l y H o s p i t a l w i l l i n no way be affected by my d e c i s i o n t o participate. Should I have any questions about the sûucy, I am a b l e t o c o n t a c t E l a i n e Bock or Elaine Stolar, Faculty Advisor. My s i g n a t u r e i s acknowledgemen- cf receipt of a copy cf t h i s form and my ccnsent to p a r t i c i p a t e m the study. Participant Interviewer  E l a i n e Book 321-2661  Signature:. Signature:  ::.iaine S t o l a r 522-2277  Date: Date:  I (B what  t h i n k mayoe a çood p l a c e t o b e g i n i s w i t n thin k t h e word c a r e g i v e r means t o y o u t h a t t h a t word i s b e i n g u s e d a l o t and that, was t h e name o f t h e g r o u p and I am wonciering what t h a t word means t o y o u .  1 ^2 "4  5 6 7 8 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27  30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51  APPENDIX K  K: W e i l i t means b e i n g t h e main su poor t and t h e main c a r e g i v e r m _ever>^_aav' f u n c t i o n s a t home . ' • q u a s s T. i i ^over I : 0  3 4 t^-oM COM  S'O t h e main  support...  ft : The m a i n s u p p o r t and -ne main , t n e a c t u a l c a r e g i v e r i n t h e s m a l l t h e s m a l l even minute t o m i n u t e o r hour t o hour needs o f t h e p e r s o n who needs c a r e . I : So w o u l d t h a t when y o u s a y s u p p o r t y o u mean s u p p o r t i n what s e n s e s ? R: Uhm...oh p e r h a p s t o keep t h e i r  ^  do  m o r a l e up  I : uh huh R: a n d uh make s u r e t h a t n o t h i n g g e t s b e h i n d l i k e b i l l s paid , things l i k e that that may w o r r y t h e p e r s o n who i s t h e p a t i e n t . I guess t o t r y t o r e a s s u r e them t h a t uh t h a t we a r e m a n a g i n g o.k. J : I t s o u n d s l i k e you a r e t a l k i n g a b i t of emotional support.  about  quite  R: I t h i n k s o r t o f I t h i n k e s p e c i a l l y i n h i s c a s e y o u know i f h e , he i s p r e t t y w e l l a l w a y s teaT'y. I t h m K he does uhm p r o b a b l y does b e c a u s e he i s n o t s o l e t o wai K e i t h e r . un  -osi^+;^^^  h: t r . l n ^ ne ooes neec o e r naos msyoe more n]ora L s u p p o r t t n a n p a r hap= someone who i s a b l e t o g e t UP a no oo v>jnetner tne wâsnroom o r you know e a s i l y . C o u r s e we a o n ' t Know what m w i l l be c a p a b l e o f when he comes no me am d i f r e r e n t r r o m some o^ t n e c a r e g i v e r s w n o a r e s. i r e a g y g i v i n g c a r e i o t. h e r w o r Q S IIT) y o u r e y e s you s e e y o u r s e i ' a s d1T f e r e n t t n a n t n e o t n e r c a r e g i v e r ;  Demg  K : W e i i t n e o t n e r c a r e ç i ••..' a r s w n o s v e a 1 r e a d y and have e x p e r i e n c e d b e c a u s e t h e i r husband o r p a r e n t i s a l r e a d y home. I nave t o e x p e r i e n c e  3 4 6 7  8 9 10 11 \  13 14 15 16 17 18 19 20 21 22 23 24  R: W e i l t h e o t h e r c a r e g i v e r s who have a l r e a d y and have e x p e r i e n c e d b e c a u s e r h e i r h u s b a n d o r p a r e n t i s a l r e a d y home. I have t o e x p e r i e n c e you now II mean rriea. I t h i n k I knouj what i t w i l l be 1 i ke r i g h t _^u t I d o n ' • Know 1 O i s u r e . Because t rnay be q u i t e d i f f e r e m : uhm . He a t t h e moment w a s n ' t g e t t i n g c a r e y o u s e e , s o he s o r t o f i g n o r e me o r do w h a t e v e r he f e e i s l i k e an effect it not going to w h e t h e r he gets ed b u t mayoe o n c e ne i s home, he msy c n a n g e a b i t . So i t i s s o m e t i m e s h a r d t o accept- t h a t when I am t h e r e and he ' i 1 l i s t e n t o h i s r e c o r d and r e a d a book a t t h e same t i m e ( L a u g h ) . So t h a t ' s a l i t t l e hard b u t p e r h a p s when he i s home ne won't do t h a t . I : And when y o u s a y t h a t h i s b e h a v i o r may c h a n g e when y o u a r e home b e c a u s e you a r e g o i n g t o be t h e one who i s he i s g o i n g t o d e p e n d upon t o do some o f t h e t h i n g s l i k e t h e c o o k i n g and t h e c l e a n i n g t h o s e k i n d o f t h i n g s t h a t he now has t a k e n c a r e o f f o r h i m . R: Uh Hun. Î hope s o . I:  28 29 30 31 32  36 37 38 39 40 41 42 43 44 45 46 47 T^.^cA /ÛWJ^ 48 49 50  You hope t h a t i t i s g o i n g t o c h a n g e .  R; Y e s I mean y e s I hope i t w i l l . I : I t s o u n d s l i k e t h a t may be one o f t h e difficulties t h a t y o u may be e x p e r i e n c i n g r i g h t now i s a r o u n d t h e c o m m u n i c a t i o n . yen ' c a u s e he d o e s n ' t want t o d i s c u s s mucn . . . on he w i l l s a y nave y o u p a i d t h e b i l l o u t •vi,t e v e n t h a t s o mijch anymore and he w o u l d asK c e r t a i n q u e s t i o n s and he d o e s n ' t anymore , do In o t h e r iat rnu' now . v\' O r •• J 1 O C'- < ':e r y t h m g . w e i i I was d o m q i t uean he w o u l d asK i f I naa pa l a t h e e1ec t r i c b i l l o r pnone b i l l o r w h a t e v e r out ne G o e s r t. do t h a t anymore s o i n o t h e r me. w n i c n i s no b i g c e a i t h e b i i i comes i n and i t i s n o t a s i f I have t o rememoer t o go 3 n C; p S y 1 1 w 11- r"i o u. t t h e o 1 1 1 , . . t ne D 1 1 1 c o m e s i n and s o y o u go pay i t . B u t h e i s n o t s how l u g i n t e r e s t anymore r i g n t now. t h o s e some o t n i s t a s K s R:  He u s u a l l y h5  maoe  sure  oetorev were  paid .  4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 222 -u>'Y^2  I 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 46 47 48 49 50  I : A no now t h a t i ; one t h a t ne i s h a n d i n g to you.  over  R; W e l l I had been d o i n g i t f o r m o s t . . I had p r e t t y w e l l a l w a y s done i t r e a l l y . He h a d n ' t p a i d t o o much a t t e n t i o n t o i t b u t t h e n he d i d . B u t t h e n I t h i n k a t one p o i n t I h e a r d a b o u t when women a r e o f t e n l e f t and t h e y d o n ' t know wnat t o do and I t h o u g n t , g e e . I f he were l e f t he w o u l d be i n t h e same b o a t . So I t h i n k i t i s t i m e he t o o k on t h e s e r e s p o n s i b i l i t i e s s o I j u s t s u g g e s t e d t h a t he d o . And he t o o k i t over. I t i s n o t much b u t a t t h e same t i m e he . knew what was g o i n g on and s i n c e I had a l r e a d y done i t , i t d i d n ' t make any d i f f e r e n c e t o me. (T3) O.K. What was i t a b o u t t h e g r o u p were i n t e r e s t e d i n c o m i n g t o ?  t h a t you  R: W e i l I g u e s s t o hear ...uhm s o r t o f f o r t h s u p p o r t g r o u p , f o r t h e uhm p e r h a p s t o h e a r wnat o t h e r p e o p l e were g o i n g t h r o u g h or maybe I t h i n k t h a t . , .to have gone t h r o u g h . know you_ a r e n o t a l o n e o e c a u s e I d i d that feel v e r y much L i k e when he was i n t h e o t h e r h o s p i t a l , I was k i n d a a l o n e . I didn't know a n y b o d y who was g o i n g t h r o u g h t h e same t h i n g s o y o u a r e r e a l l y c o m i p l e t e l y on y o u r own. So i t was n i c e t o have a g r o u p where y o u were a l l h a v i n g t h e same p r o b l e m s . I- G o i n g t h r o u g h t h e same t h i n g s , e x p e r i e n c i n g maybe some o f t h e same d i f f i c u l t i e s . R; Y e s a no t o near some o f t i i e t h i n g s I " nadn't t h o u a n t o f , o f c o u r s e oecause you c a n ' t , Know e v e r y t h i n g a n d i t was n i c e near that, l i k e t n e one man wnose w i f e was i m p r o v i n g , s o > much and s o t h a t was n i c e t o h e a r . I:That  was e n c o u r a g i n g  R:Ï e s , i t was , o e c a u s e s o m e t i m e s y o u t h i n k t h a t s t n e way i tw i l l a l w a y s be and h e r e t h a t man s a i o n i s w i f e was i m p r o v i n g g r e a t l y a n d improving a i l tne time. i-ves you n e a r t I ; G: /es y o u h e a r t and t n e m o r a l e you .  support f o r  Cf.-  ' "2 3 4 6 7 8 9 10 12 14 15 16 17 18 19 20 21 22 23 24 L5  28 29 30  40 41 4 ..'  45 46 47 48 49 50  um^N^  R; I t n i n k s o . I t g i v e s vou s o r t o f h o p e , y o u k no t h a t p e T- haps a s t i m e Qoes on . re'.t 1 g e x. s t r o n a e r and i f ne a c e s n i s e x e r c i s e s a n a a l l t h e t h i n g s h e i s supposée t o GO, t h a t he may, 'may b e n o t be a b l e t o w a l k a l o t , may b e h e ' . i l be afeis—^c. walk. c a u s e one t h i n g I was c o n c e r n e d a b o u t was g o i n g t o t h e b a t h r o o m a n d t h a t was t h e m a i n one i g u e s s , j u s t b e i n g a b l e t o go t o t h e b a t h r o o m uhm . I t h o u g h t i f he c o u l d w a l k t o t h e b a t h r o o m t h a t w o u l d make i t D e c a u s e I c o u l d n ' t w i t n mv s h o u l d e r and h a c k . I c a n ' t t a k e any o f h i s w e i g h t and s o t n a t was my m a i n c o n c e r n . I : And s o h e a r i n g some o f t h e o t h e r c a r e g i v e r s talk about their experiences t o y o u was r e a s s u r i ng . R: W e l l i t was . I t was b e c a u s e l i k e my s o n what h e , y o u know he had o n l y m e n t i o n e d i t two or t h r e e t i m e s b u t t h e s e t h i n g s s t i c k i n y o u r mind and i t was w e l l ne knew n i s g r a n d f a t h e r had a i e d , my f a t h e r had o i e d f r o m s t r o k e . He had, he was e i g h t y , he had a s m a l l stroke w n i c h he c o m p l e t e l y recovered f r o m but then when he was e i g h t y f o u r ne haa a m a s s i v e a n d my s o n Knew that, s o o f c o u r s e i t was one t h i n g he was c o n c e r n e d a b o u t "On Motn " o r t h e way he p u t was " we m i g h t nave t o go t h r o u g h t h i s again". So t h i s i s a l w a y s s o r t o f i n y o u r m i n a uhm and my n u s o a n a ' s was q u i t e oad b u t t h e n i f he d i d have a n o t n e r o n e s o t h a t was K i n o a m my mind t o o . ? i i t h o u g h ne i s a mucn y o u n g e r man t h a n my f a t h e r uhm b u t y o u know I t h i n k my s o n i s v e r y c o n c e r n e a ano h a v i n g t o go t h r o u g n s o m e t h i n g l i k e t h i s s o I am_ t r y i n g a l i a y 'n : r e a r s ano a ay oad i s impr o v i ng ano s o i t was n i c e t o near someone e l s e ' s relative had i m p r o v e c . Now I'm n o t s u r e wnat age n i s w i f e i s o u t uhm s h e w o u l d be a t l e a s t s H x t y 1 w c i l d imaaine mayoe a l i t t l e o i a e r and s o i t was n i c e t o near t h a t someboay vvaf__^incM-o\.n.,ric; . I: So i t s o u n d s l i k e r c ^ y o u i t i s n e a r i n g o t n e r s t a l k i n g , t a l k i n g w i t n o t h e r p e o p l e who are m a s i m i l a r s i t u a t i t a i , r e c e i v i n g support ana mayoe g e t t i n e som^ l o e a s o f now t o c o p e ana now t o t a c k l e t h e s i t u a t i o n s . K; Yen 1 t n i n k  so .  l^xO^^  4 5 6 7 6 9 10 11 12 13 14 15 16 17 IS 19 20 21 22 23 24 25  I : You t a l k e d a l i t t l e o i t a b o u t , we s t a r t e d "aïking a o i t about some o r t b e d i f f i c u l t i e s t h a t yoL,! e x p e r i e n c e a s a c a r e g i v e r nc^w o e c a u s e a s you s a y you d o n ' t nave nim a t nome . B u t i t c e r t a i n l y sounds as though t h e r e a r e c e r t a i n l y some c n a l l e n g e s t h a t y o u a r e c o m i n g up i n y o u r r o l e a s i t i s r i g h t now a r o u n d how he i s dealing with h i s i l l n e s s .  p>W^x(ûiI>i'  2t-  p3 29 30 31 32 33 34 35 q2. 36 37 38 39 40 41 42  i\iu\vji^x^  4o 4fc  47 48 49  o  O  K ; T sm n o t s u r e uh l i k we have t o f i n d , and have oeen f o r some t i r . we s h o u l d f i n d a n 3Partme£:t o r somethincs t h a t was a l l on one he had a r t h r i t i s and I c o u l d s e e l e v e l c a u s e he he was g e t t i n g w o r s e , b u t ne nas h i s w o r k s h o p i n t h e b a s e m e n t a n a uh , he b u i l d s model s h i p s , and uh l a s t y e a r we d i d n ' t g e t a n y t h i n g i n t h e garden a t a l l . T h a t was t h e f i r s t y e a r a n d s o I have been s a y i n g f o r q u i t e a few y e a r s we s h o u l d be f i n d i n g some p l a c e l i k e an a p a r t m e n t m i g h t be t h e b e s t , c a u s e I c o u l d s e e hirn q e _ t t i n a w o r s e s o I t h o u g h t w e l l i f we have t o go i n t o a w h e e l c h a i r o r u s e a w h e e l c h a i r f o r c e r t a i n p a r t s o f t h e t i m e a t l e a s t he w o u l d have a c c e s s , i f i t was an e l e c t r i c w h e e l c h a i r , t h i s was b e f o r e t h e st£4*ke. t h e n he c o u l d still have a c c e s s t o s a y t h e m a i l s , could s t i l l go t h e r e on h i s own and he w o u l d n ' t have t o have me w i t h nim i f ne f a i t l i k e j u s t , you know he 1iKeo spenoing a l o t of time i n D o o K s t o r e s a n d I am n o t r e a l l y , I go into a b o o k s t o r e i t i s f o r s o m e t h i n g s p e c i f i c , b u t he l i K e s t o s p e n d t i m e i n t h e r e and d i f f e r e n t places. So he c o u l d GO t n a t on h i s own and I c o u l o maybe shop somewnere e l s e and uhm b u t t h e r e was a l w a y s s o many o b s t a c l e s 1 i k e "I'm not q o i n c t h e r e o e c a u s e i d o n ' t want p e o p l e a o o v e me, b e l o w me. o e n m o me. You know y o u c a n ' t c o n t r o l o t h e r p e o o i e and t h e y c o u l d f ire ana a oe c a u g h t ~Thë>'' start a f ter c o^st^ç_le st •:;on • t ia:';e c a t s . ' I t wot ^ ~ o b s t a c l e a n d I s a i d we nave t o r i n c s o m e t h i n g t h a t , y o u c a n ' t oo UP anc oown s t a i r s and y o u s h o u l d n ' t D e d o i n g i t now. W e i l maybe we. c ou a g r e e b e c a u s e I naa g r e a t c o n t e n t w i t i'l a n a p a r t m e n t wnere we d i o n ' t have t h e e X tr a t h o t i g h t s o f UP Keep, wnat needs doing. an a p a r t m e n t i t i s o n i y YOU K n o w i t y o u ' r e m wnat I S i n s i a e t n a t we ••O'-'lo nave t o c o n t e n o With. I w o u l d n ' t have t t w c r r v a b o u t g a r a e n s , although iP s u ' a miss tne garoen. Sut anyway .( L a u g h . ) 7 g e t a winciow oox . ou y o u Know i'le i s v e r y s t r o n g , v e r y s t r o n a . "No, i t a i l  1(6  4 5 6 7 8 9 10 11 12 13  14  (^fevvjild^^  18  ier^  20 23 24 26 26  dlaA'^ûr^^A  29 30 31 32 33 34 35 36 37 38 39 40 41  42 43 44 45 46 47 48 49 50 51  c  t h e s e t h i n g s d i d n ' t happen". And w h i l e he was i n i t ne o t h e r h o s p i s a i ] , t h e y w o u l a go and i o o K a t an a p a r t m e n t and when we w o u l d t a l k t o him a b o u t i t . i t was a new D u i l d i n g n o t r a r f r o m where we a r e . I ' a l i k e t o s t a y i n o u r general area i f p o s s i b l e and uh s o we, a friend o f mine and I . went t o s e e t h i s a p a r t m e n t . U n f o r t u n a t e l y , t h e r e were o n l y 2 l e f t uh on t h e g r o u n d f l o o r a n d t h e o t h e r was facing a wall. I f you had been on t h e s e c o n d C'T t h i r d , y o u w o u l d l o o k o v e r t h e t r a f f i c a n d t h a t w o t i i d have oeen r i ne. E u t we d i d n ' t go f u r t h e r w i t h i t o e c a u s e i t was p a r t o f a complex. And I j u s t a i d n ' t t h i n k t h a t w h i l e h A ^ ^ ^ i A ^ _ J j j 1 n h a d — x - o x — i a i i C — L D — m o v e _would__be v e r y good. So I d i d n ' t . So i t i s s o m e t h i n g , y e s t e r d a y we t a l k e d a b o u t i t by t h e way and uh he d i d s a y he d i d n ' t want t o b u t I m i g h t have t o go a h e a d a n d j u s t do s o m e t h i n g a n d I know he won't be happy. But t h a t might cause a problem . I : So t h a t problem .  is  something  you  forsee  as  a  R: Oh y e h . I : And i t s o u n d s l i k e i t i s e v e n a b i t o f a difficulty f o r you r i g h t now b e c a u s e y o u p e r c e i v i n g a d e c i s i o n and a move t h a t needs t o be made a n d he i s r e s i s t i n g t h a t . R: Y e n . B e f o r e ne haa s o many r e a s o n s why we c o u l d n ' t do t h i s and c o u l d n ' t do t h a t , and I t h o u g h t w e i i a n i g h r i s e we c o u l d have a D e a u t i r u l view ano a t l e a s t e v e n i f y o u a r e b o r e a , y o u c a n l o o k o u t and t h e r e i s s o m e t h i n g t o see.- B u t I c a n s e e t n a t i s g o i n g t o oe a b i t or' a proDlem , I am t n e more r e a l i s t i c one ano more s o r t o r . . . l i k e wnen we a r e iooKing o n t ne T . v. o n t homes he o o e s n " t pay an-, i n t e r e s t u n t i l he : one a t two million collars wnere I ar looking at a hundred a n d f i f ty t h o u s a n a . I am lookiïfg a t wr'.at we c a n a f r o r o s n o ne i s l o o k i n g a t what he would r e a l 1y 11Ke. I c a n s e e some O l T T l C U i t y a_r.Lsing w n e n a d e c i s i o n has t o oe made .  Q)  what a r e some o f t n e o t h e r o i f f i c u i t i e s t h a t you p e r c e i v e i n your r o l e r i g h t now. d e c i s i o n maKing one o t tnem, c o m m u n i c a t i o n i s  R; B u t when t h i n g s a r e noc g o i n g w e l l , a l l o r a s u d d e n y o u a r e aware t h a t y o u d o n ' t have ... and t h e n you hear d i f f e r e n t p e o p l e t a l k i n g a t t h e group say about h a v i n g t h e i r d a u g h t e r s or t h e i r w h a t e v e r , i t makes i t e v e n more s o y o u realize, my g o o d n e s s I d o n ' t r e a l l y have a n y o n e l i k e t h a t t o c a l l o n . So d o n ' t want t o f e e l s o r r y f o r m y s s l t o u t i t makes you more aware.  6 7 8 9 10  11 12 13  I : U i i t h some o f t h e d i f f i c u l t i e s (noticed t e a r s i n her e y e s ) Would y o u l i k e a t i s s u e ?  14 15 16  R: Oh t h a n k y o u .  18 >.l 19  R; Oh y e h I j u s t f e e l guess .  20 21 22 23  I ; A r e y o u o.k.?  ,  24 ':••„ 25^ 26 C.&-  ..  a b i t s o r r y f o r myself I  I j / And t h a t ' s o.k. e v e r y now and a g a i n . P a u s e W i t h some o f t h e d i f f i c u l t i e s t h a t you have b e e n t a l k i n g a b o u t , how have y o u d e a l t w i t h them?  R : I am n o t s u i I s o r t of j u s t kinda t r y ricj^ t o -t-hink a h o u t them v e r y much. Try not t o . . . b e c a u s e I know i t d o e s n ' t h e l p b e c a u s e I c a r v ^ come up w i t h t h e s o l u t i o n s on my own. 29 ^ r ^ i ^ So I c a n ' t r e a l l y change them b e c a u s e p a r t o f 30 ^'^ 31 aa^On^a i^JKtei---p-L them a r e my h u s b a n d . Ana s o I h a v e n ' t r e a l l y h a n d l e d them, not r e a l l y . 34 35 36 37  I : Or h a n a l e c i them by way o f a c c e p t i n g t h e t h i n g s t h a t y o u c a n and do have c o n t r o l o v e r or I am not s u r e I u n d e r s t a n d .  38 39  R; ït i s s o r t o f uh I t h i n k i t p r o o a b i y i s a c c e p t i n g t h e f a c t t h a t miaybe I am r e a d i n g a  40 41 42 45 44  45 46 47 48 49 50 51  ne s n o' i n t e r e s t e d i n i t , i a c c e p ; t n e Ta c' t v) a t n e not 1 n t e r e s t e o , s- o i g u e s s- t n ^ a f a i r b i t o f .just a c c e p t i n g that I can't c n a n g e i-;nat he o o e s l i k e and d o e s n ' t ^ike;. I : uh nun R: Say f o r m o v i n g , w e l l I c a n ' t .just a c c e p t t h a t b e c a u s e t h a t i s s o m e t h i n g t h a t has t o be done. B u t I hiâven't r e a l l y f a c e d what I g o i n g t o ao. I K n o w what we have t o oo b u t I j u s t naven't s o r t of faced i t . I thought I  another.  mes.- ^c-?.  R: Y e h , t h e r e i s s o r t o f , we do have d i f f e r e n t interests. He i s i n t e r e s t e d i n p h o t o g r a p h y 5 and Ï i i K e t a k i n g a p i c t u r e ana t h a t i s i t . He 6 l i k e s model s h i p s and I l o v e t o r e a d . I l o v e 7 t o w a l k w e l l he l i k e s t o w a l k a b i t . So we had 8 s o r t o" a i r r ; -ent . nterests m a way an 9 t r y i ng t o f i n d s o m e t h i n g t h a i we c a n s h a r e ,'v^'A>wai^^"^^^^ t o g e t h e r _ , t v e n j u s t one t h i n g . He 1 i kes t han 11 cook and he Cioes a b e t t e r job 12 e v e n s h o u g h he came t o i t l a t e b u t p e r h a p s we 13 c o u l d go w a l k i n g b u t now he c a n ' t . B u t maybe 14 when he has h i s w h e e l c h a i r maybe we c o u l d 15 still go o u t . You know e v e n o u r r e a d i n g 16 m a t e r i a l s a r e s o d i f f e r e n t t o o . He l i k e s war 17 b o o k s . B u t j u s t t o f i n d s o m e t h i n g y o u know. I 18 am j u s t n o t r e a l l y s u r e . B e c a u s e we d o n ' t have aJiv_-re 1.aattlIvveess hheri e r e s e e c a u s e t h a t makes a 20 V.-t^ûVAûcÊr^Ki d i f f e r e n c e t o o . Not h a v i n g any r e l a t i v e s h e r e 21 Ui' 22 23 I : How d o e s t h a t make a d i f f e r e n c e f o r you? 24 25 R: W e l l , i t i s n o t l i k e . . . w e l l t h e r e a r c _ g i r l s i n my f a m i l y and my h u s b a n d i s an o n l y he n e v e r had t h a t f a m i l y you know b r o t h e r - s i s t e r . B u t I had 4 s i s t e r s and we were a l l v e r y c l o s e and s o y o u c o u l d t a l k t o 29 them a b o u t a n y t h i n g and s h a r e a n y t h i n g b u t i t 30 is hard long distance 'cause they live 31 o v e r s e a s and i n t h e U n i t e d S t a t e s . 32 33 34 u. r"i l u h 35 •Z' O 36 maKe: Girrerence. And now my pai • e n t s "lave p a s s e d a w a y t o o . So l i k e w h e n I 37 go bac K 38 is just like I'd never l e f t , vii J U S C p i c k UP a n d go on l i k e I n a v e n e v e r 39 left They a r e t h e s a m e a n d I g u e s s I am t h e s a m e 40 Have r ! ' t r e a i l y c h a n g e d c h a t m u c h . As t h o u g h : 41 42 3 t. vou Know of thing 43 wn'.<-.cn i s n i c e 4  .-J  44  45 46 47  alniost  j^ASiV 49 50 51  ^i^i-i^ A  able  I : uh nun  o  ense o t c o m f o r t '  JUS ï t o K now t na s t n e r e is anc \ w h i l e we w e r e 'vh e r e a n d a n o T i n e , y o u. w e r e C- a P a D1 e h a n d l e e V e r y t hi i n g .  K; I think so « oommeeb\o d y s there y DOG y 'A! CI  and  1 1 Ko  W C  .L J .  4 5  6 7  iTiight d i s c u s s i t w i t h my n e i g h b o r . She i s v e r y g o o d . I have known her f o r a l o n g timie. They t r a v e l a l o t . I t h o u g h t I m i g h t t r y t o d i s c u s s I t w i t h her j u s t t o you know t o g e t . . . s h e i s v e r y good a t s u g g e s t i o n s and s h e d o e s n ' t f e e l bad i f you d o n ' t t a k e them i n o t h e r words .  8 9 10  11 12 13 14 15 16  17 18 19  20 21 ^22 23 24  "25'  26  29 ^0 31 -32 33 34' 35 36  •iu n  R: So I t h o u g n t I m i g h t . . . and s h e knows t h e s i t u a t i o n of c o u r s e . I thought I might t a l k t o ner . t u z. s o m e t i m e s I f e e l t h a t some-ching comes m not h a n d l i n g i t . . . I j u s t don't up a n d I f e e l c a p a o i e o f h a n o i i n g i c s o I j u s t have t o t r y andmaybe j u s t l e t i t go w h i c h i s n ' t t h e b e s t way t o h a n d l e t h i n g s b u t t h e n . . . I : Can y o u g i v e me an e x a m p l e ? S o m e t h i n g y o u f e e l you a r e n o t c a p a b l e o f h a n d l i n g . R: W e l l my own s h o u l d e r p r o b l e m . I t has been g o i n g on and on f o r s o many y e a r s . I d i d f i n d a d o c t o r who saw t h a t t h e r e was s o m e t h i n g wrong b u t I am n o t s u r e t h a t he saw t h e r i g h t thing. I r e a l l y have a p r o b l e m and I w a s n ' t a b l e t o g e t thought t o t h e d o c t o r s so I j u s t a c c e p t e d i t a s i t was and 1 t h o u g h t as oon a s I am w e l l I am g o i n g b a c k home t o g e t m e d i c a l a t t e n t i o n because I f e l t a t l e a s t I w o u l d have s i s t e r s t h a t c o u l d o b s e r v e me when I go t o t h e d o c t o r c o u l d come a l o n g and s a y "Yeh I saw h e r " 1 was v e r y e m o t i o n a l i n e v e r y way . Now I d o n ' 5el q u i t e t h a t b a d did h e l p me a l i t t l e b i t .  37  Pause  38 39 40  uh o e r o r e c o m i n g t o t n e g r o u p , now a i d y o u r e e l y o u w e r e c o o i n g o v e r a 11 :''  41 42 C'y43 44 45 46 47  48 49 50  R '• Uh I g u e s s i n a way I ... s o m e t i m e s I f e l t I was c o g 1ng o.k. o e c a u s e t h e o n l y t h i n g I c o u l d oo Wo'S CO t o t h e n o S ' p i t a i and v i s i t nim e v e r y aay . C o u r s e i t was t w i c e a dav t i i t h e h o u r s c h a n g e a i n O c t o b e r and t h e n Î c h a n g e a t o o n c e a G a y . i t n i n K i w> a s s o r t o r c o o i n g T a i r i y well. I w o u l d corne noiTie and make s u p p e r and l a y down a b i t and go t o b e d . I was s o r t o f  7 -VMi"' « 8 9 10 11 12 13 14 16 17 18 19" 20 21 22 23 24  R: uhm and t r y i n g Lo l e t ev -y thinig_ g e t o v e r my head t y p e o f e m o t i o n a l l y . And nnere were some d a y s a days and o t h e r :>ette"i w o u l a n t r e e l •sn. great b u t I a l w a y s went t o t h e h o s p i t a l b e c a u s e I f e l t a t l e a s t a s l o n g a s I saw how he was and he saw t h a t I was t h e r e , t h a t made a difference . I : When y o u s a y n o t f e e l i n g s o w e l l , w o u l d that be physically or would that be emotionally? R: W e l l p h y s i c a l l y I was n e v e r r e a l l y g r e a t but e m o t i o n a l l y a n d I t h i n k even m e n t a l l y . B u t f o r t h e t i r s t two t h r e e months I g u e s s y o u know i t was r e a l l y h a r d . M i n d y o u t h e r e were more p e o p l e who went t o s e e him b e c a u s e he was c l o s e r t o home and s o I w a s n ' t q u i t e s o . . . I d i d n ' t f e e l a s t h o u g h he was b e i n g n e g l e c t e d o r a n y t h i n g b e c a u s e t h e r e were q u i t e a f e w p e o p l e went U P . B u t a s t i m e went c7n p e o p l e do g e t on w i t h t h e i r l i v e s y o u know and t h e y have t h e i r own f a m i l i e s y o u know I : uh huh  31 32 33 34 35 36 38 39 40 41 42 43 44 45 46 47 43 49 50  . : . : •  J 2 e g a n _ t o f e e l a l i t ' - l e D i t worse R; Then I w a s n ' t a b l e t o a n d s t a y a s l o n g a s som? o f t h e o t h e r p e o p l e who w o u l d s t a y f o r e v e r where maybe I c o u IH st-av o n l y t w e n t y m i n u t e s a n d t h e n I had t o l e a v e . So I s u p p o s e c o p i n g i s one t h i n g and a t t h e same t i m e , I had a l o t o f t i m e t o s o r t o f t h i n k a b o u t what w o u l d happen and t h e n I w o u l d g e t aown e m o t i o n a l l y t o o b e c a u s e I j u s t d i d n ' t know what was h a p p e n i n g . You know h i s h a rid a n d h i s l e g w e r e n ' t c o m i n g bacK s o I hao more t i m e t o t h i n k about- him and t h e f u t u r e and t h e n I r e a l i z e d t h a t well r e a i i y 1 nao t o j u s t w a i t and s e e what nappens b e c a u s e y o u c a n ' t l i v e i n what m i g h t happen and what m i g n t n o t , y o u ' r e t a k i n g on n o t o n l y today's problems but o t h e r day and i t i s )f came L i ci u J. can t na t I  .jU^  had t o  u wou1o come t o r e a 1 1 z < take care of today.  •~'0 i t s o u n o s  your  husband  has been i l l and s i n c e you've been a c a r e g i v e r t h a t y o u have been a f f e c t e d e m o t i o n a l l y . . . 4  R; uh huh  5  6 7 • • ' ' ,. •8 • • 10'' 11 12 13 • 14 • : ^ 15 •• •• -16; . " • 17 • . -' 4.8 .:• •19 -. Î20 •- •• ^•21 '• 22 23 '24 ~ 25 _  ë  . . . I ;  and m e n t a l l y  R : tih huh l^:-  How a b o u t  physically?  R: P h y s i c a l l y I g u e s s i am t h e same a s a l w a y s . My g e n e r a l h e a l t h i s g o o d . I had a c h e c k u p . I mean d i d n ' t s e e a d o c t o r f o r 20 y e a r s b e c a u s e I was a l w a y s w e l l t h e r e f o r e when I d i d go w i t h t h i s p r o b l e m , t h e d o c t o r d i d n ' t know me o f c o u r s e a n d s o he a s k e d what i s y o u r a g e . And a s s o o n a s he h e a r d my a g e , w e l l h e r e i s e s t r o g e n as i f t h a t i s the s o l u t i o n t o e v e r y t h i n g . I found t h a t v e r y hard because I d o n ' t go t o d o c t o r s u n l e s s t h e r e i s s o m e t h i n g wrong b u t t h e n t h e y d o n ' t know t h a t b e c a u s e t h e y a o n ' t know me. So t h a t was k i n d a h a r d t o take...... I: Do you. t h i n k y o u r s h o u l d e r o r any o t h e r k i n d s o f a c h e s o r p a i n s have been r e l a t e d t o the t i m e ?  30 d i è ^ ^ - ^ ^ R. N o t r e a l l y , i t had i m p r o v e d a c t u a l l y s i n c e 31 ^v^\f^Uu Î t o the c h i r o p r a c t o r . My s h o u l d e r h a s : 3 2 - r f ^ ) d e f i n i t e l y improved. I couldn't s i t t h i s long .33 b e f o r e s o he has done s o m e t h i n g . I am a f r a i d 34, , ,. t o go b a c k b e c a u s e he may do s o m e t h i n g t o make •35 i t w o r s e . I l i k e him t o make i t b e t t e r . 36 3/ . (j/'Jr, huh..Uhm How has o e i n g a caregiver 38 a f f e c t e d you s o c i a l l y ? 39 40 R: Uhm we n a v e n ' t hao r e a i l y wnat y o u w o u l d 41 c a l l a s o c i a l l i f e f o r q u i t s a w h i l e b e c a u s e he 42 h a s been nome w i t h c o l i t i s , when he r i r s t g o t 43 colitis. I am t r y i n g t o t h i n k how many y e a r s 44 ago " n a t i s . And he r a a a l w a y s worked 45 a f t e r n o o n s n i f t s o t h a t s o r t o f c u t down o u r 46 s o c i a l l i f e q u i t e a b i t . And I had w o r k e d 47 d u r i n g t h e cay s o . . . g r a d u a l l y over t n e y e a r s 48 a l o t of t h e p e o p l e we've Known have moved away 49 s o o u r s o c i a l l i f e was q u i t e come down e x c e p t 50 a few p e o p l e . And some o f them a r e no l o n g e r 51 C.t m:^-^cu\.i^tJ4 w i t h u s . Uhm s o d o n ' t know t h a t t h a t i n ^ fiOàùJii^j itse^lfjias really affected i t . TThTnFrrT^do  ^^^W ^^^^^w^i-v ^"'^ •  go t o c h u r c h a n d we have t h e s e n i o r s on T u e s d a y , I do go t h e r e on T u e s d a y m o r n i n g s and uh b u t he n e v e r went s o i t wasn't s o m e t h i n g we snared .  4  5 6 7  i:  8 9  R : As I s a y i t i s m a i n l y i t w o u l d be a r o u n d my c h u r c h c a u s e i t i s n o t t o f a r f r o m where I  10 11 12 13  O.K.  how a b o u t  socially  you  then?  i : So y o u naven t nox. been a b l e t o go a s o r t e n a s y o u had b e f o r e o r what I am s a y i n g i s y o u s r i l l have been a b l e t o do what y o u ...  14 15 16  R: I t h i n k s o .  17 I; M a i n t a i n before .  is  19 '20  •  ~ 21  frx> pC)o:Jli^ d4\ . g o t  .,23  .  •••.25--',,-; 26 V 29 30 31 32 33 34 35 36 37 38 39 40 41 42  45 46 47 48 49 50 51  the social  contacts  t h a t y o u had  I w o u l d s a y a b o u t t h e same , y e h . Î h a v e n ' t any d i f f e r e n c e t h a t way.  (l\ Can y o u t e l l me oeing i n the group?  about  what  i t was  like  • R: Uhm i t f e l t ... I d o n ' t l i k e t o s a y g o o d , b u t i t f e l t t o know t h a t e v e r y b o d y t h e r e was i n v o l v e d i n t h e same s o r t o f p r o b l e m s i n a way o f c a r e g i v i n g b e c a u s e I c o u l d hear t h e r e was p r o b l e m s w i t h c a r e g i v i n g . And s o i t f e l t good t o Know t h a t y o u were n o t a l o n e . W e l l i t was s u p p o r t t o know t n a t t h e r e c;re o t h e r p e o p l e who a r e a o i n g t h r o u s j h e x a c t l y thg- ?:a_me^ o r a l m o s t e x a c t l y t h e same a s what you a r e g o i n g through. So y e h I t h i n K i t was... I t h i n k I b e n e f i t t e d f r o m i t a no I am g l a d I went a n d t h a t I was a b l e t o go b e c a u s e I r e a l l y d i d n ' t t n i n K tna,t. i w o u i d De a D i e t o go .  educat iona1 ? 'r.'- L t n i :";!'•. o o t H , YoH t'C-t" ^tom wnat and f r o m t n e p a p e r s you gave u s .  i  nearo  i • i ïi w n a t w a y s ;' R: Well I think wnen vou gave us t h e t n e r m o mi e t e r s t o K n o w t n a t t n e s e c o u 1 ci D e no r hi a, i a rio t na t t nese c o u i o i";a op e n w Vis n y o ti.  H  5 i t X ^ ' ^ C ^ ^ ^ ^ î h a d n ' t t h o u g h t o f a s s t a g e s , I had j u s t 2 Oi^O t h o u g h t o f a s you know you h a n d l e i t o r y o u 3 ' , '^ d o n ' t . So t h a t was i n f o r m a t i v e . And you c a n ^ AA/)^^C€^ ^ruWB c h e c k on t h a t ano s a y w e l l i t i s p a r t 5 o f t h e c a r e g i v e r 's g r o u p and you have t o l e a r n 6 how t o h a n d l e i t a s t h e y come a l o n g . I t h e l p e d 7 me t o understand because I didn't know 8 . a n y t h i n g a b o u t .. w e l l I o i d n ' t know a n y t h i n g 9 a b o u t t h e d _ i f f e r e n t s t a g e s y o u go t h r o u g h a n d 10 now I am aware t h i s c a n haopen and t r y t o 11 take t h i n g s as easy as p o s s i b l e I t h i n k so 12 p e r h a p s y o u d o n ' t g e t t o t h e p o i n t where y o u 13 a r e h i g n on t h e t h e r m o m e t e r . And i t m i g h t 14 j^Ju-iA'csl C<.> r h a p p e n and I t h i n k some o f i t w i l l d e p e n d on 15 iifcWUsso^ I him w h e t h e r he i s c o o p e r a t i v e or not b e c a u s e 16 co^^A yQ,j g.j-ç y o u r b e s t f o r someone 17 a n d t h e y a r e n o t c o o p e r a t i n g . . . t h e r e was one 18 • l a d y t h e r e and w i t h her mother and how s h e i s 19 h a v i n g r a t h e r a d i f f i c u l t time i t sounds a t 20 t i m e s . Now I am n o t s u r e w h e t h e r her mother 21 was c o o p e r a t i v e o r u n c o o p e r a t i v e o r w h e t h e r i t 22 j u s t constant c a r e makes y o u more e d g y , I am 23 n o t s u r e s o I g u e s s maybe i t w o u l d depend on 24 how my h u s b a n d i s . Uhm ...  27 28 29 30 31 32 33 34 _. 35 C--?-M^-**-^^-'•'"y^ 3^, n ^ ^ ^ 37 58 • 39 40 £N.r^ fyjCiO-iiji 41 u l ^ ; ^ 42 43 44 45 46 48 en Q  I;Sut a g a i n being in t h e group a l l o w e d hear those o t h e r experiences? R: E x a c t l y . I : So was i t e m o t i o n a l group?  '  ^  . •  .  ,.  /• ,, ' - •  you t o  •  '  f o r y o u t o be i n t h e  R : I am n o t s u r e t h a t i t r e a l l y a f f e c t e d me e m o t i o n a l l y . P e r h a p s i f I was a l r e a d y g i v i n g r Si rr.-^ hêA^ care_at_home then I r e s i that t a l k i n g about ^^'.^ some o f t h e s e t h i n g s ano a p p l i e d t o me , i t \ m i g h t nave o u t he i s n o t nome y e t , I am not s u r e i f i t a f f e c t e a me e m o t i o n a l l y . I think i t W3S morc ijDJiivciiial-ion and e d u c a t i o n a l and r more k n o w i e a g e w h i c h I h a a n ' t known. I w o u l d s a y on t h a t s i d e , I : Was  i t a comfortable  setting  R: I f o u n d i t q u i t e c o m f o r t a D i e ( 1 5 1 n w hi a t •/•j a y s t. n s n r; .3 s c h a n g e d t h i n g s f o r you?  Y  . . - ^^^..^wsiWx ^5^^f>^-f^^^=T^  '''''' ^^'^ What c o u i o r^a'cypevi ano  f o r you? there.  o e i ii g  i n t n e g r o u. P  '^^'"^ m o r e _ a w a r e ^ now t h i n g s c o u l a b e .  H a v i n g t h a t i n f o r m a t i o n b e c a u s e i f you have t h e i n f o r m a t i o n i t w o u l d n ' t seem so bad when teiA u j ^ d J u ^ ^ ^ ^ ' ^ ^ t ^ ^ " - 3 i^sppens t h a t î a o n ' t u n d e r s t a n d o r fClThs C-fy. j c a n ' t do a n y t h i n g a b o u t . B e c a u s e I have t h e 4 / I n f o r m a t i o n t h a t t h e c a r e g i v e r -çan g e t i n t o 5 'different emotional states^ So hopefully f. h a v i n g t-hat k n o w l e d g e and a t l e a s t I won't 7 f e e l bad aboui: i t . a t l e a s t I ' l l know tTlat: 8 w e l l t n i s c o u l d be f a i r l y n o r m a l o r a c c e p t a b l e 9 or i t c o u l d be P a r t o f t h e p a t t e r n , 10 11 I : And maybe h i s d i s a b i l i t y ind h i s i l l n e s s ? 12 P a r t of h i s a d j u s t m e n t ? 13 14 R; Yen and I s h o u l d n ' t l e t i t a f f e c t me too 15 mcuh. I-l w i l l a f f e c t me s o m e t i m e s . You can't 16 l o o k a t somebody who had been w a l k i n g and Xnow 17 he i s i n a w h e e l c h a i r b u t i f he c a n a c c e p t i t , 18 I ' l l f i n d i t e a s i e r as w e l l . 19 20 I : So i f we looked a t t h e g r o u p and the 21 changes t h a t i t may have b r o u g h t f o r you 22 a r o u n d d e a l i n g w i t h some o f t h e d i f f i c u l t i e s 23 you have t a l k e d a b o u t e a r l i e r t o d a y l i k e uhm 24 some o f t h e c o m m u n i c a t i o n d i f f i c u l t i e s , have some o f t h e t h i n g s f r o m t h e g r o u p c h a n g e d how you a r e g o i n g t o d e a l w i t h t h a t . 27 28 R: I h a d n ' t r e a i l y t h o u g h t a b o u t t h a t y e t . 29 30 I ; Or e v e n a r o u n d d e c i s i o n m a k i n g w h i c h you 31 i d e n t i f i e d as b e i n g a ... 32 33 R : uh 34 35 I : As you t a l k i t s o u n d s l i k e , and I d o n ' t 36 want t o De p u t t i n g w o r o s i n y o u r mouth so t e l l •jj / me i f I am r i g h t or w r o n g , o u t i t s o u n d s l i k e 38 you have become s t r o n g e r e m o t i o n a l l y i n o r d e r 39 t o o e a l i / i i t h s o n i e oi tne c h a l l e n g e s t h a t you 40 a r e a o i n g t o be f a c i n g . 41 42 43 R• I t h i r K t nat i s t r u e . I t h i n k t h a t ^s t r u e 44 but the f a c t t n a t I a l s o f e e l a b i t b e t t e r 45 w i t h my s h o u i d s r . [ am r e a l l y q u i t e a s t r o n g and have emotionally. 46 person pnvsicaily (yj^S aO.Vuiu^ TÙ 47 me nt a i l y . r-J o w t hi a t n i v Si-iOUioer i s a b i t 48 b e t t e r I do o e i i e v e t n a t I can n a n a l a t h i n g s 49 b e t t e r t h a n I w o u l d have e v e n a c o u p l e montns ago . 1  uhm  have t h e r e  o e e n a i f f e r a n c e s f o r you  in  how y o u d e a l  6 •r\h S\ 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24  27 20 29 30 31 32 33 34 36 37 38 39 40 41 42 43 44 45 46 47 48 49 =.0  with  stress?  R: I am not r e a i i y s u r e t n a t i t h a s made t h a t much d i f f e r e n c e w i t n r e g a r d s t o s t r e s s . M a i n l y because I s t i l l look to prayer mainly t o r e l i e v e s t r e s s . I get a great peace with p r a y e r and s o I am n o t s u r e , i t c o u l d h a v e , I'm .just n o t s u r e . I:O.K. How a b o u t t h i n g s i n t e r m s o f c a r i n g f o r y o u r s e l f ? P a u s e Uhm c e r t a i n l y u n d e r s t a n d i n g y o u r h u s b a n d and h i s i l l n e s s . Has i t made some c h a n g e s f o r you i n t h a t way o f t h i n o t i n g a b o u t those things. R: No I d o n ' t t h i n k s o . I have n e v e r r e a l l y been a p e r s o n t o spend a l o t o f time o n m y s e l f . You know, I a l w a y s f e l t a s l o n g a s I was p r e s e n t a b l e , I have n e v e r r e a l l y b e e n one f o r g o i n g t o t h e h a i r dresser . I a l w a y s f e e l as l o n g a s I am p r e s e n t a b l e , I d o n ' t sx-end a l o t o f t i m e on m y s e l f . I: What a b o u t c a r i n g f o r y o u r s e l f i n x h e o t h e r s e n s e s when we t a l k e d a b o u t d o i n g c n e t h i n g s t h a t y o u l i k e t o o o ? L i k e I r e c a l l yc;u t a l k i n g about v i s i t i n g with the neighbors. Has t h e g r o u p been an i n f l u e n c e i n t h a t way 7 R; Uh t r y i n g t o t h i n k . . . I am n o t r e ^ s i i l y s u r e about t h a t because t h e neighbor Z visited a c t u a l l y has come o v e r t o me s o many t i m e s t h a t I j u s t when I f e l t a b i t b e t t e r ~ t h o u g h t I m i g h t j u s t go o v e r and v i s i t h e r . ?o I d i d . f S o I 'm n o t r e a i l y s u r e w h e t h e r t h e - r o u p had t a n v t h i n g t o ao w i t h t h a t , i t c o u l d ^-a e. S u t I am n o t s u r e . I w o u l d l i k e t o be a i o t more s o c i a j o l e . T h e r e a r e s o many t h i n g s I' :. i o v e t o do CTnfor t u n a t e i y p h y s i c a l l y at tn a moment anyway ï am ..just n o t r e a i i y a b l e t o . Because when t h e p r e s s u r e b u i l d s up i n my shoulder t h e n my f a c e . . I d o n r t know i s i t gs" - - t i n g r e c now ? I ; I think R; I t d o e s b u i l d s UP.  i t i s very get vary  warm i n h e r e r e c when  I ; A r e votj r e e l i n g i t s t a r t R; T h e r e i s a l i t t l e  the  to bui.it  pressure  UP now?  b i t , n o t much t i n o u g n  . I  know when I have r e a c h e d my  I: A g a i n w i t h r e s p e c t t o the i n f l u e n c e of t h e g r o u p on how you p e r c e i v e b e i n g a c a r e g i v e r . any t h o u g h t s on t h a t ?  3 4 5 6 7 8 9 10 11 12 13  R ; uh I: More positively, difficult?  15 - p P ^ ^ l ' ^ ^ ^ ' ^  ^5  17 18 19 20 21 22 23 24  27 28 29 30 31  34 35 36 38 39 40 41^ 4^ A  44 45 46 47 48 49 . ^0  limit.  V  J  more  negatively,  more  R: I J e l l I t h i n k I see i t i n a more ^ p o s i t i y e light now b e c a u s e I . . h e a r i n g t h e gr"^up taXi.; and how some p e o p l e were f i n d i n g i t r e a l l y . . . the 2 l a d i e s opposite me w i t h t h e i r mother were p e r h a p s s h a r i n g t h e d u t i e s but s t i l l t h e y had a p o s i t i v e o u t l o o k b e c a u s e t h e i r mother was d o i n g v e r y w e l l and t h e y seemed t o be h a n d l i n g i t o.k. and so t h a t was n i c e t o h e a r t h e p o s i t i v e s t o o . B e c a u s e when you have, e s p e c i a l l y i n t h e f i r s t few months and when you know you a r e g o i n g t o be a c a r e g i v e r t o o , I t h i n k a l o t of i t . i s n e g a t i v e . So i t was n i c e t o hear t h e d i f f e r e n t p o s i t i v e s . So I t h i n k the p o s i t i v e t h i n g s t h a t I heard from t h e g r o u p h e l p e d me a l o t . I:And o v e r a l l , how you a r e c o p i n g now how you were c o p i n g b e f o r e t h e g r o u p ?  versus  R: Uhm so much has t o GO w i t h my p h y s i c a l you u n d e r s t a n d . Cause when you f e e l wiell you can h a n d l e e v e r y t h i n g . I mean when I f e e i w e l l I am t h i n K i n g o f a i l t h e t h i n g s I want t o do b u t t n e n . . . anvway o u t yes I t h i n k i t nas oeen v e r y p o s i t i v e f o r me. I t has h e i p e o me to u n d e r s t a no a l o t . I : uh  hun  R: Ana a l s o t o a c c e p t some of t h e t h i n g s w n i c h I g u e s s we are a l i t t l e a f r a i a of o r ' not e x a c t l y a f r a i d , o u t t h e j e a r of t h e unknown b e c a u s e now I am more aware o r what i t i s a i l a b o u t . And I oelieve that has oeen very e f f e c t ive . I: I s t h e r e a n y t h i n g t h a t I haven't a o d r e s s e d t h a t you w o u l d l i k e us t o know, a n y t h i n g a b o u t either the group experience or being a c a r e g i v e r t n a t w o u l d r e a l l y i n f o r m us?  r.... ''2  è 7 8 9 10 11 12 13 14 15 16 17  • ^  yet i t âC R: i s a l i t t l e d i f f i c u l t t o s a y b e c a u s e I am s u r e many t h i n g s w i l l come UP. YOU knew i f you a r e 24 hour a i r e .a d y g i v i n .g c a r e t o • s o m e o ÏI s o n a b a s i s , then I t h i n k y o u a r e miore aware o f what i s i n v o l v e d . I s t i l l . . . I have an i d e a o f what i t i s a l l a b o u t b u t u n t i l he i s home a n d v e r y s i t u a t i o n i s d i f ft eo ir e n t , u h , b u t I w o u l d ;ay t h e w h o l e g r o u p was. g r e a t . ^ a l l y want t o t h a n k y o u f o r y o u r I : We i i I t i m e and f o r participating. I t was a r e a l p l e a s u r e rs<i s v i n g you and t h e i n f o r m a t i o n •f-t hu a. t you s h a r e d w.as v a i u . a b l e and had an i m p a c t on others too R; W e l l I hope  50.  

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