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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 University of Manitoba, 1987 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SOCIAL WORK i n FACULTY OF GRADUATE STUDIES (School of Social Work) We accept t h i s thesis as conforming to the reauired standard THE UNIVERSITY OF BRITISH COLUMBIA July, 1994 ® Elaine Susan Book, 1994 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholariy purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed vk t^hout my written permission. Department of 6r-x.;/ai U^&lK The University of British Columbia Vancouver, Canada Date ^.xkxj H DE-6 (2/88) ABSTRACT The objective of t h i s study was to examine the e f f e c t s of a short-term support group on the reported stress of family caregivers of h o s p i t a l i z e d e l d e r l y . In addition, i t was designed to provide descriptive information on caregiver stress, the caregiving experience and the factors that influence the experience. The sample of eight caregivers, 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 stress scale pre- and post-group involvement as well as participated i n an in-depth interview. Qualitative data was analyzed using a modified grounded theory approach. The r e s u l t s from t h i s study indicate that despite few changes i n perception of stress following group involvement, there are benefits to be derived from p a r t i c i p a t i o n i n a caregiver support group. As a group, respondents reported minimal change i n t h e i r experience of stress both during the interviews as well as on the standardized stress scale. However, respondents did indicate an increased sense of support as well as f e e l i n g more confident and prepared for the challenges of caregiving. Similar to previous studies, caregivers who attended the support group program generally reported s a t i s f a c t i o n with the group experience. The study highlights the significance of i n d i v i d u a l differences i n caregiving situations and i n the experience of caregiver stress. The study also addresses issues of accountability within s o c i a l work practice and provides d i r e c t i o n for future service delivery to family caregivers of e l d e r l y persons. TABLE OF CONTENTS Page ABSTRACT i i TABLE OF CONTENTS i v LIST OF TABLES v i LIST OF FIGURES v i i ACKNOWLEDGEMENT v i i i CHAPTER ONE: INTRODUCTION Statement of the Problem 2 Purpose 2 Importance of the Inquiry 2 Organization of Thesis Content 5 CHAPTER TWO: LITERATURE REVIEW Introduction 6 Chronic I l l n e s s 6 Family Members as Caregivers 7 A Conceptualization of Stress 11 Group Work as an Intervention Strategy 12 Summary 18 CHAPTER THREE: THEORETICAL FRAMEWORK Introduction 19 Theoretical Framework 19 Research Question 24 CHAPTER FOUR: METHODOLOGY Introduction 26 Description of Support Group Program 26 Rational for the Research Method 28 Research Design 29 Sampling Procedures 29 Instruments 31 Perceived Stress Scale 31 In-depth Interviews 32 Demographic P r o f i l e 34 Evaluation Form 34 C r e d i b i l i t y and Soundness 34 Data C o l l e c t i o n Procedures 36 Assumptions 37 Limitations 37 E t h i c a l Considerations 41 Data Analysis 42 Summary 44 CHAPTER FIVE: PRESENTATION OF FINDINGS Introduction 45 Sociodemographic Charac t e r i s t i c s of the Sample 45 Findings 51 Qualitative Analysis of Interviews 51 Quantitative Analysis of Perceived Stress Scale....70 Linking Qualitative and Quantitative Data 73 Support Group Evaluation Form 73 Summary 78 CHAPTER SIX: DISCUSSION OF FINDINGS Introduction 79 A Conceptualization of Caregiver Stress and the Effe c t s of Support Group Involvement 79 Interviews 82 Perceived Stress Scale 85 Linking Interviews and Perceived Stress Scale 86 Evaluation Form 87 Summary 89 CHAPTER SEVEN: CONCLUSIONS, IMPLICATIONS, RECOMMENDATIONS Introduction 90 Conclusions 90 Implications for So c i a l Work Practice 93 C l i n i c a l Practice 93 Public P o l i c y 95 Recommendations for Further Research 96 REFERENCES 97 APPENDICES Appendix A: Support Group Program Content 103 Appendix B: University of B r i t i s h Columbia Approval... 104 Appendix C: Holy Family Hospital Approval 105 Appendix D: Support Group Information Letter 106 Appendix E: Letter Requesting P a r t i c i p a t i o n i n Study..107 Appendix F: Perceived Stress Scale 108 Appendix G: Interview Guide 110 Appendix H: Demographic P r o f i l e I l l Appendix I: Evaluation Form 112 Appendix J: Consent Form 113 Appendix K: Example of a Transcript 114 LIST OF TABLES Table Page 1 Sample Demographics 46 2 Summary of Sample Demographics 50 3 Summary of Stages and Themes, Interview Data 52 4 Scores of Perceived Stress Scale 71 5 Linking Qualitative and Quantitative Data 74 6 Results from the Evaluation Form 76 LIST OF FIGURES Figures Page 1 Caregiver Stress-Coping Model 20 2 Caregiver Stress-Coping Model, Revised 23 3 Bar Graph of Perceived Stress Scale Scores 72 4 Conceptualization of Caregiver Stress and the E f f e c t s of Support Group Involvement on Stress 80 ACKNOWLEDGEMENT In d i f f e r e n t ways, many people have contributed to t h i s research project and the completion of t h i s t h e s i s . I would l i k e to acknowledge Elaine Stolar, faculty advisor, for her time and valuable guidance over the past two years. I would also l i k e to acknowledge the e f f o r t s of Paule McNicoll and Mary H i l l i n reviewing my t h e s i s . I would l i k e to express appreciation to: Holy Family Hospital f o r enabling me to p a r t i c i p a t e i n the program and for allowing the research to occur i n the hospital; my friends and colleagues f o r t h e i r h e l p f u l and supportive conversations; and the caregivers for t h e i r time and openness without which the research would not have been completed. Most importantly, I want to thank my husband, David, for his never ending support, encouragement and patience. Chapter One Introduction Canada has and continues to experience a steady increase i n the number and proportion of older adults ( S t a t i s t i c s Canada, 1986). With advanced age, there i s an increase 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 — conditions which create a need for emotional, physical and instrumental support for a growing part of the population. The central role of the family i n providing such support to the f r a i l e l d e r l y has been documented extensively as well as recognition that such involvement can create excessive demands for the family caregiver (Brody, 1985; Clarke & Rakowski, 1983; Shanas, 1979). Stress from caregiving has the p o t e n t i a l to negatively impact a caregiver's psychological, s o c i a l and physical well-being (Toseland, Rossiter, Peak & Smith, 1990). 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 often marks the beginning of the caregiving r o l e , i t i s a time of c r i s i s for many (Hamlet & Reid, 1990). It has been suggested that practice and research need to focus on caregivers e a r l i e r i n t h e i r caregiving tenure and when demands are more extreme (Malonebeach & Z a r i t , 1991). Given t h i s , and that group work as an intervention modality with family caregivers has gained acceptance i n the community set t i n g (Toseland & Rossiter, 1989), i t i s i n t r i g u i n g to investigate the e f f e c t of group work with family caregivers i n the hospital setting. statement of Problem A review of the l i t e r a t u r e encourages the use of support groups with family caregivers as a means to address caregiver-r e l a t e d concerns. However, l i t t l e attention has been given s p e c i f i c a l l y to family caregivers of hospitalized e l d e r l y and the e f f e c t s of a hospital-based support group on caregiver stress. Purpose The purpose of t h i s study i s to: a) examine the e f f e c t s of a short-term support group on stress of family caregivers of h o s p i t a l i z e d e l d e r l y ; b) provide descriptive information on caregiver stress, the caregiving experience and the factors that influence the experience; and c) examine the r e l a t i o n s h i p between stress scores, demographic c h a r a c t e r i s t i c s and the caregiving experience. Importance of the Inquiry This inquiry i s relevant to the f i e l d of s o c i a l work for many reasons. Within health care settings, s o c i a l workers are increasingly under scrutiny. With budget constraints and competition from other health care professionals, and with the apparent p r o l i f e r a t i o n of s e l f - h e l p groups led by health care consumers, s o c i a l work departments across Canada are needing to placé emphasis on accountability and empirically based practice. Elimination of d e f i c i e n c i e s has become a c r i t i c a l issue i n health care and thus, evaluation of service needs to move beyond the peer audits of the past (Simon, 1991). Evaluative research can provide evidence of s o c i a l work's contribution i n addressing psychosocial concerns within a m u l t i d i s c i p l i n a r y health care se t t i n g (Berkman, 1990). By examining outcomes of the support group, t h i s study begins to address accountability of s o c i a l work practice and programs. As research i s not firmly entrenched i n health care s o c i a l workers' thinking and practice (Kane, 1983), t h i s study i s valuable as i t contributes to f u l f i l l i n g the c r i t i c a l need to move on from anecdotal reports as the basis for expanding the profession's knowledge base. The s o c i a l work profession recognizes the v i t a l r o le research plays i n furthering i t s status and goals (Turnbull, Saltz & Gwyther, 1988) and influencing practice (Coulton, 1985). Further, the study highlights the importance of consumer feedback and involvement, conveying a message of i n t e r e s t and concern to the public. As the support group program on which t h i s study focuses i s a newly developed program, the investigation i s a beginning step i n evaluating the program, generating information that w i l l d i r e c t future caregiver program planning within hospital settings as well as i n the community. The information revealed w i l l inform s o c i a l workers and other health care professionals as to issues and needs of family caregivers. An awareness and understanding of the stresses evoked by caregiving i s necessary i f l i f e s a t i s f a c t i o n i s to be maintained for both the caregiver and care receiver (Robinson & Thurnher, 1979). Inattention to the p l i g h t of caregivers has implications for the i n d i v i d u a l , the care receiver, the family system, the workplace, and the public health care system. The greater the burdens perceived by the caregiver of the caregiving s i t u a t i o n , the more l i k e l y the physical, s o c i a l and emotional well-being of the caregiver w i l l s u f f e r , and the less he/she w i l l be able to continue to provide care (McCallion, Toseland & Diehl, 1994; M i l l e r , 1989). The care receiver may then suffer d i r e c t consequences ( i e . i n s u f f i c i e n t care) as may the entire family system ( i e . negative feelings may develop including g u i l t and resentment leading to poor communication patterns). The workplace at large may also be impacted as stressed caregivers struggle with meeting home and work demands (McCallion et a l , 1994). F i n a l l y , the health care system i t s e l f tends to be effected as stressed caregivers often require services for themselves and then additional services for t h e i r care receiver (Abel, 1990). As a r e s u l t of the many implications, decreasing caregiver stress i s an important outcome to investigate. The study i s also of importance as i t further supports the ex i s t i n g l i t e r a t u r e on the benefits of group work and strengthens the case by moving beyond informal participant feedback to methods of quantitative and q u a l i t a t i v e analysis. Thus, i t i s imperative that s o c i a l workers examine the e f f e c t s of prof e s s i o n a l l y led support groups to meet qu a l i t y assurance requirements, to j u s t i f y the ongoing existence of these group programs, and to provide future practice and p o l i c y directions (Peterson & Anderson, 1984; Turnbull et a l . , 1988). Summary and Organization of Thesis Content In sum, the objective of the study i s to begin to l i n k research and practice i n the f i e l d of caregiving by gathering c l i n i c a l data and using i t as a basis for action ( i e . future programs, advocacy for caregivers). The thesis has been organized as follows: Chapter One has introduced the issue of family caregiving, presented the problem and reasons for i t s exploration. Chapter Two provides a comprehensive l i t e r a t u r e review of pertinent areas including chronic i l l n e s s , r o l e of the family as caregivers, stress theory, support groups, and past relevant studies. Chapter Three describes the t h e o r e t i c a l framework for the study. Chapter Four d e t a i l s the methodology of the study and Chapter Five presents the findings. Chapter Six discusses the findings and the thesis i s concluded with Chapter Seven which highlights implications for s o c i a l work practice and recommendations for future research. Chapter Two Literature Review Introduction In t h i s chapter, a review of the l i t e r a t u r e on the topic areas of chronic i l l n e s s , family caregivers, stress theory, support groups and past relevant research i s presented and discussed as i t r e l a t e s to the study of group work with family caregivers of h o s p i t a l i z e d e l d e r l y . Chronic I l l n e s s I t i s evident i n the l i t e r a t u r e and highly v i s i b l e i n society that Canada i s experiencing a steady increase i n the number and proportion of older adults ( S t a t i s t i c s Canada, 1986). In 1991, approximately 12% of Canada's population were age 65 and more, twice the proportion who were older adults i n Canada at the turn of the century (Chappell, 1990; National Advisory Council on Aging, 1993). This segment of the population has recently been divided into age categories of the young-old, the middle-old and the old-old, with studies i n d i c a t i n g recent rapid increases i n the old-old age category (Chappell). With advanced age, there i s an increase 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 (Masciocchi, Thomas & Moeller, 1984). Approximately 85% of older adults have one or more chronic conditions which most frequently include heart and c i r c u l a t o r y problems, a r t h r i t i s and chronic rheumatism, hypertension, and v i s i o n and hearing problems not r e l i e v e d by glasses or aides (Chappell). This prevalence i s a r e s u l t , i n part, of a s h i f t i n the epidemiology of disease from acute to chronic diseases as well as a decrease i n accidental deaths. Concomitant advances i n medicine and medical technology have coinbined to increase the numbers of individuals who survive serious trauma and chronic i l l n e s s (Biegel, Sales & Schulz, 1991). Also, a decrease i n death rates has increased the l i k e l i h o o d of person developing l a t e r l i f e chronic d i s a b l i n g conditions such as Alzheimer's disease (Biegel et a l . ) . Despite the prevalence of chronic diseases, only a r e l a t i v e l y small proportion (5-8%) of older adults l i v e i n i n s t i t u t i o n a l settings (Connidis, 1989). Consequently, i t has been estimated that nearly half 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 least one chronic condition, conditions which l i m i t functional a c t i v i t y and mobility, and require support on an ongoing basis (Biegel et a l . ) . As a r e s u l t , the need for well-functioning informal support systems to provide care to the e l d e r l y i s of paramount importance. Family Members as Caregivers The c e n t r a l r o l e of the family i n caring for the f r a i l e l d e r l y population has been documented extensively (Brody, 1985; Clarke & Rakowski, 1983; Shanas, 1979). The myth of abandonment of older adults by family members has been d i s p e l l e d with estimates of 80-90% of care received by older adults being provided by family members (Brubaker & Brubaker, 1992; Chappell, 1990). Moreover, current p o l i c i e s r e f l e c t an increased emphasis on the family as an appropriate caregiver (Barnes, Given & Given, 1992) and look to the family as a resource to hedge the r i s i n g costs of long-term care (Montgomery & Borgatta, 1989). Clearly, the involvement of the family, otherwise known as the informal family caregiver, i s fundamental to the health and well-being of the aged and i s , i n fact, s o c i a l l y and f i n a n c i a l l y necessary. It i s important to recognize, however, that such involvement has the pote n t i a l to create demands on the caregiver which challenges t h e i r a b i l i t y to manage the s i t u a t i o n . Support for caregivers, whether i t i s physical, emotional, s o c i a l or f i n a n c i a l , may enable the provision of care to continue, may encourage o v e r a l l well-being for both the caregiver and care receiver, and may even decrease the rate 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 el d e r l y ( B a i l i e , Norbeck & Barnes, 1988; Gnaedinger, 1989). In simplest terms, caregiving refers to a c t i v i t i e s and experiences involved i n providing help and assistance to r e l a t i v e s or friends who are unable to provide for themselves (Pearlin, Mullan, Semple & Skaff, 1990). While a range of meanings are attributed to the term 'caregiver', most studies focus on family members within the realm of caregiving (Barer & Johnson, 1990). 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 family members play i n the provision of care to older adults, the study focused s o l e l y on adult family caregivers. Brody (1990) suggests there i s a hierarchy i n the family r e l a t i o n s h i p of caregiver to care receiver. When the care receiver i s married, the spouse almost invariably becomes the p r i n c i p a l caregiver. However, often due to li m i t e d capacities, the e f f o r t s of the elde r l y caregiving spouse are frequently supplemented by t h e i r adult c h i l d r e n . Research indicates that just as family almost i n v a r i a b l y refers to spouses or adult c h i l d r e n , adult children most often means adult daughters (Brody, 1990; Horowitz, 1985; S t o l l e r , 1983). Studies c i t e that 80-90% of care provided by adult ch i l d r e n i s provided by daughters or daughter-in-laws ( M i l l e r & Cafasso, 1992). Further, the roles played by daughters and sons tend to be somewhat d i f f e r e n t and are often gender-based. While equally i n c l i n e d to o f f e r emotional support, linkage services and f i n a n c i a l support, daughters are much more l i k e l y than sons to provide instrumental, hands-on assistance including personal care, transportation, household chores and meal preparation (Chappell, 1990; Connidis, 1989; Horowitz, 1985). Gender differences are also believed to influence access to resources that may a l l e v i a t e caregiver s t r a i n and appraisal of the caregiving experience ( M i l l e r & Cafasso). More recent 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 role of caregiver (Brubaker & Brubaker, 1992; Kaye & Applegate, 1990). With demographic trends including smaller families and increased proportion of women i n labor market, d i f f e r e n t patterns of caregiving are emerging (Horowitz, 1985). Necessarily, the nature of the caregiving r e l a t i o n s h i p varies between and among spouses, adult sons and daughters, and s i b l i n g s by v i r t u e of the d i f f e r e n t issues uniquely inherent i n each r e l a t i o n s h i p . However, regardless of age, gender or r e l a t i o n s h i p , i t i s generally recognized that the task of caregiving i s associated with consequences which caregivers often perceive as s t r e s s f u l — i e . s h i f t s i n family roles and i n family homeostasis, decline i n physical health, emotional s t r a i n , changes and adjustment i n l i f e s t y l e (Brody, 1985; Cantor, 1983; Long, 1991). Caregiving can be a rewarding yet demanding experience. I t often involves a long-term commitment, challenging the caregiver's coping resources (Toseland, Rossiter, Peak & Smith, 1990). Changes i n the care receiver's health and changes i n the caregiver/care-recipient r e l a t i o n s h i p , which are often caused by chronic physical and mental health problems, are factors that create a general sense of worry and caregiver stress. Stress from caregiving has the p o t e n t i a l to negatively impact a caregiver's psychological, s o c i a l and physical well-being (Toseland et a l . , 1990). Psychological d i f f i c u l t i e s associated with caregiving include depression, anxiety, anger, f r u s t r a t i o n , g u i l t and self-blame (Abel, 1990; McCarthy-Neundorfer, 1991; Toseland et a l . , 1990). S o c i a l l y , caregivers often report f e e l i n g lonely and i s o l a t e d . C o n f l i c t s with family members about caregiving r e s p o n s i b i l i t i e s are commonly experienced (Cantor, 1983; Abel) as are c o n f l i c t s with the care r e c i p i e n t (Toseland et a l . , 1990). A caregiver's physical health may also be at r i s k as a r e s u l t of the physical tasks required ( i e . l i f t i n g , t o i l e t i n g , bathing) as well as a r e s u l t of l i m i t e d time for rest (McCarthy-Neundorfer; Toseland et a l . , 1990). Thus, recent studies have shown that severe and sometimes overwhelming stress can a r i s e for family caregivers ( K i l l e e n , 1990; Long, 1991; P e a r l i n et a l . , 1990; Rankin, 1990), p o t e n t i a l l y impacting various aspects of t h e i r l i v e s . A Conceptualization of Stress L i f e events i n and of themselves are not s t r e s s f u l . Further, duration, quantity and magnitude of an event i n d i v i d u a l l y do not explain why some persons are d e b i l i t a t e d by some events and others are not (Stolar, MacEntee & H i l l , 1993). An i n d i v i d u a l ' s personal appraisal 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 transactional model, a general approach taken by Lazarus, stress i s defined as the outcome of interactions between the organism and the environment (Lazarus & Folkman, 1984; Singer & Davidson, 1991). More s p e c i f i c a l l y , an event i n the environment i s considered to be a stressor only i f the i n d i v i d u a l ' s appraisals of i t , and of her/his own resources, suggest that i t i s threatening or disturbing. Appraisal refers to f i r s t evaluating the stressor i n terms of i t s capacity to do harm, and second, to assessing the individual's a b i l i t y to handle the stressor and the strategy most l i k e l y to reduce the potential harm (Singer & Davidson, 1991). Coping then consists of cognitive and behavioral e f f o r t s to deal with the demands that are appraised as taxing or exceeding the resources of the i n d i v i d u a l (Folkman & Lazarus, 1991). It i s important to recognize that appraisals of person-environment relationships are influenced by i n d i v i d u a l differences. Such differences, or antecedent person c h a r a c t e r i s t i c s , include patterns of motivation, b e l i e f s about oneself and the world, and recognition of personal resources for coping ( i e . f i n a n c i a l means, s o c i a l and problem-solving s k i l l s , health and energy) (Folkman & Lazarus, 1991). Individual differences i n these variables may help to explain why an event may be appraised as a threat to one person and as neutral or a challenge by another. The process of appraisal may also be influenced by environmental variables including the nature of the danger, i t s imminence, p r e d i c t a b i l i t y and duration, and the existence and qual i t y of s o c i a l support resources to f a c i l i t a t e coping (Folkman & Lazarus). Social support as a factor i n ameliorating the effects of stress ( B a i l l i e et a l . , 1988; Singer & Davidson, 1991) w i l l be addressed further i n the discussion on group work as an intervention. Group Work as an Intervention Strategy In view of the growth and increasing v u l n e r a b i l i t y of the el d e r l y population and the resultant demands on t h e i r f a m i l i e s , the development of intervention strategies for family caregivers has received much attention. With the rapid growth of research and affirming findings on s o c i a l supports as a buffer against the negative impact of stress, professionals have r e a d i l y adopted an ideology of support intervention and support groups have become a very common form of help offered (Chase-Goodman, 1991; Northen, 1990). Within the health care setting, groups have gained recognition for helping patients and family members cope with the emotional stress and socio-emotional problems that often accompany severe i l l n e s s or 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 reveals support for the use of groups with caregivers of f r a i l e l d e r l y as a means to address stress and other caregiving-related concerns (Monahan, Greene & Coleman, 1992; Toseland & Rossiter, 1989; Toseland, Rossiter & Labrecque, 1989). Support groups most often re f e r to sel f - h e l p groups and prof e s s i o n a l l y led support and information groups. In general, the helping dynamic i s a re c i p r o c a l exchange among individuals who have a sim i l a r problem (Chase-Goodman, 1991). Involvement i n a support group provides a forum to share concerns, p a r t i c i p a t e i n the struggles of others, to f e e l normal i n spite of stress, to express feelings and fears, to exchange ideas, and to provide an opportunity to help others (Chase-Goodman). Support groups aim to develop cohesiveness, enhance self-esteem, and produce better coping among i t s members. With respect to caregiving, support groups have been developed for spouses, adult children, families and friends i n general, and even for grandchildren. A review of several group intervention studies, e x i s t i n g support group programs and , personal experiences indicate the emergence of common themes that are addressed i n these groups: information about the care receiver's condition, coping with feelings about caregiving, issues of unpreparedness, sense of f e e l i n g without options, g u i l t and r e s p o n s i b i l i t y , problems i n l i m i t setting, repression of taboo fe e l i n g s , a need to 'save' the care receiver, caregivers' need to take care of themselves, unfinished business with family members, interpersonal and intergenerational relationships, communication, knowledge of resources outside the group, and home-care s k i l l s (Altschuler, Jacobs & Shiode, 1985; Popky-Hausman, 1979; McCarthy-Neundorfer, 1991; Toseland & Rossiter, 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 interventions i n helping family caregivers with the consequences of caregiving. The studies reviewed consisted mostly of professionally led groups for family caregivers. Majority of the participants were women, r e f l e c t i n g the composition of family caregivers i n the general population. The groups were short-term (four to ten sessions up to six months), using a supportive approach often i n combination with an educational component (Biegel et a l . , 1991; Greene & Monohan, 1989; Toseland & Rossiter, 1989). Overall, while findings demonstrate that support group partic i p a n t s are very s a t i s f i e d with t h e i r group experience and report a number of benefits 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 , findings are less conclusive when measuring the e f f e c t s of the groups i n r e l i e v i n g caregiver d i s t r e s s (Biegel et a l . , 1991; Toseland & Rossiter, 1989). Some studies have concluded that group interventions have yielded no s i g n i f i c a n t e f f e c t s on depression, l i f e s a t i s f a c t i o n , s o c i a l support and coping (Toseland, 1990). Other studies, however, have revealed more p o s i t i v e r e s u l t s (Clarke & Rakowski, 1983; Greene & Monahan, 1989; Whitlatch, Z a r i t , & von Eye, 1991). As an i l l u s t r a t i o n , Greene & Monahan (1989) reported a caregiver 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 reductions i n anxiety, depression and sense of burden. Toseland and colleagues (Toseland et a l . , 1989) reported improvements i n psychological functioning and p o s i t i v e personal changes i n caregivers following support group involvement. Z a r i t , Anthony & Boutselis (1987) also reported p o s i t i v e outcomes including decreases i n perceived burden and p s y c h i a t r i c symptoms for group p a r t i c i p a n t s . Despite unanimous conclusive evidence either 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 methods previously used as well as i n d i c a t i n g areas of caregiving research that require further attention. Of importance i s recognition that evaluation of the e f f e c t s of group interventions have been based mostly on p r a c t i t i o n e r observation of group process and outcome and participant s e l f -report questionnaires, with few studies using standardized measures or q u a l i t a t i v e interviews (Biegel et a l . , 1991; Toseland & Rossiter, 1989), The review also indicates that the majority of the studies have focused on caregivers of e l d e r l y r e l a t i v e s with mental i l l n e s s or Alzheimer's Disease, with a lack of attention to caregiver groups of f r a i l e l d e r l y with other d i s a b i l i t i e s . With respect to the e f f e c t s of caregiving such as anxiety, depression and more s p e c i f i c a l l y stress, c r i t i q u e s of the e x i s t i n g research have raised questions as to the researcher's a b i l i t y to evaluate such change without the use of a standardized measure (Toseland & Rossiter, 1989). In i d e n t i f y i n g the need to go beyond c l i n i c a l impressions, researchers have also reinforced the value of using q u a l i t a t i v e methods i n research with caregivers, emphasizing the importance of capturing e s s e n t i a l aspects of the caregiving experience (Biegel et a l . , 1991; Toseland & Rossiter, 1989). As a r e s u l t , regarding future research directions i n caregiving, the l i t e r a t u r e has recommended that designs should include q u a l i t a t i v e and quantitative components i n an e f f o r t to y i e l d a balanced comprehensive piece of work reaping each respective analytic advantage (Abel, 1990; Barusch, 1991; McCracken, 1988). Given t h i s , t h i s research d i f f e r s from past studies as the design u t i l i z e s both quantitative and q u a l i t a t i v e methods—a standardized raieasure and in-depth i n t e r v i e w s — and the reasons for t h e i r use w i l l be discussed i n Chapter Four - Methodology. Of s i g n i f i c a n c e , only one descriptive study examining a hospital-based family caregiving support group has been found (Hamlet & Read, 1990). Rutchick (1990) suggests a few reasons for the l i m i t e d research on groups i n health care settings including small sample siz e , d i f f i c u l t i e s inherent i n increasing sample size by studying groups of varying populations or across settings, and the sheer l i m i t e d number of e x i s t i n g groups due to the amount of time required i n pre-and-post group a c t i v i t i e s . Summary As the population continues to age and older adults are challenged by disabling diseases over a longer period of time, involvement by family members w i l l be p i v o t a l to the ov e r a l l well-being of the e l d e r l y . The provision of care i s recognized as p o t e n t i a l l y s t r e s s f u l for caregivers as the demands of the caregiving s i t u a t i o n often threaten to overwhelm caregivers' coping resources. Support groups are being used with increasing frequency to help caregivers cope with stresses of caregiving. Group interventions have the poten t i a l to prevent stressors from overwhelming caregivers by providing a forum for acceptance, u n i v e r s a l i z a t i o n of concerns and feelings, and i n s t i l l a t i o n of hope. Thus, i t i s apparent that while the l i t e r a t u r e seems to support the use of support groups i n health care settings and with family caregivers of the el d e r l y , few l i n k s have been made between family caregivers of hospitalized e l d e r l y and the effects of hospital-based support groups on the experience of caregiver stress. In the chapter to follow, the t h e o r e t i c a l framework and research question for the study i s presented. Chapter Three Theoretical Framework and Research Question Introduction In t h i s chapter, the perspective through which the study i s examined, the t h e o r e t i c a l framework, and the research question are presented. Theoretical Framework The presented study i s based on the perspective that caregiving i s an i n d i v i d u a l i z e d experience which i s influenced by many factors including the pe r s o n a l i t i e s of the caregiver and care receiver, t h e i r r e l a t i o n s h i p , the nature of d i s a b i l i t y , supports ava i l a b l e , age, gender and culture to name a few. Given t h i s perspective, a caregiver stress-coping model developed by Biegel, Sales and Schultz (1991) has been adopted as the basis of the t h e o r e t i c a l framework for the study (see Figure 1). The model incorporates f i v e categories of variables important to understanding caregiving and include the following: 1) objective conditions conducive to stress, 2) i n d i v i d u a l perceptions of stress, 3) short-term responses to perceived stress, 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 conditioning variables that a f f e c t the re l a t i o n s among the other four sets of factors. Figure 1 i l l u s t r a t e s the f i v e categories of variables incorporated i n the model along with examples of s p e c i f i c variables which represent 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 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 TT II Responses to Stress • Physiological • Psychological • Behavioral I Perceived Stress Enduring Outcomes • Psychological • Psychological WeU-being • Life Satisfaction • Depression • Physical WeU-being Source: Biegel, Sales & Schultz, 1991, p.46 The u t i l i t y of the model i n understanding key concepts i n the study i s as follows. The objective conditions conducive to stress include issues related to chronic i l l n e s s ( i e . care r e c e i v e r s ' functional status, prognosis, a f f e c t i v e s t a t e ) . Perceptions of stress r e l a t e to the i n d i v i d u a l caregiver. The short-term responses to stress (ie.physiologic, psychologic, behavioral) and enduring outcomes ( i e . physical and psychologic well-being) address the e f f e c t s of caregiving on the caregiver. F i n a l l y , the i n d i v i d u a l and s i t u a t i o n a l variables (health, income, s o c i a l support, nature of p r i o r relationship) a l l influence the caregiving experience. In an attempt to customize the model and to complete the t h e o r e t i c a l framework for the study, stress theory, family systems theory and group theory are necessary building blocks. Stress theory (Lazarus & Folkman, 1984) i s an i n t e g r a l building block as i t complements the caregiver stress-coping model presented. The model encompasses components of stress theory (Lazarus & Folkman) highli g h t i n g the interactions between the i n d i v i d u a l and the environment, and the importance of appraisal. As the concept of caregiving i n t h i s study occurs within a family system, family systems theory i s also an important theory to consider i n the framework as family dimensions influence the caregiving experience. Couper (1989) summarized the p r i n c i p l e s of family systems theory as they r e l a t e to family caregiving, emphasizing that each family member plays a r o l e according to previously established family rules and patterns. Further, a change of circumstances for one member a f f e c t s the whole family and families a l t e r patterns of in t e r a c t i o n during c r i s i s periods to regain balance. Also, differences i n boundaries of ind i v i d u a l s , generations and families e x i s t impacting members and int e r a c t i o n s . Thus, a family systems perspective provides insight as one acknowledges how these factors may influence stress and coping within the caregiving experience. The f i n a l piece of the framework includes elements of group theory. The use of a support group as an intervention with caregivers i s based on the perspective that group dynamics of acceptance, u n i v e r s a l i z a t i o n of feelings and concerns, and i n s t i l l a t i o n of hope help people face and deal with t h e i r emotional reactions (Monahan, Greene & Coleman, 1992; Northen, 1990). Figure 2 i l l u s t r a t e s the caregiver stress-coping model r e f l e c t i n g the additional components of the t h e o r e t i c a l framework. As the focus of the study i s to examine caregiver stress, the model presented i s useful i n organizing the relatedness of the key concepts of chronic i l l n e s s , caregiving and stress. Further, the significance of family dimensions on conditioning variables and conditions conducive to stress, of one's appraisal on the experience of stress, and of a group intervention on enduring outcomes i s highlighted. 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 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 II i 1-^  Responses to Stress • Physiological • Psychological • Behavioral Perceived Stress Enduring Outcomes • 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 presented, the study focuses on three general areas of inquiry — family caregivers, stress and group work as an intervention modality. More s p e c i f i c a l l y , the study addresses the following question: 'How does a short-term support group e f f e c t stress i n family caregivers of hosp i t a l i z e d e l d e r l y ? ' . For the purpose of t h i s study, the key concepts are operationalized as follows. 'Short-term' referred to one and one half-hour sessions occurring weekly for four weeks. 'Support group' referred to an aggregate of persons who have a common concern and come together to support and aid one another i n coping with c e r t a i n stresses and d i f f i c u l t i e s (Northen, 1990). 'Stress' referred to "a r e l a t i o n s h i p between the person and the environment that i s appraised by the person as taxing or exceeding his or her resources and endangering his or her well-being" (Lazarus & Folkman, 1984, p.21) and was measured by the Perceived Stress Scale (Cohen, Kamarck & Mermelstein, 1983). It was further understood by e l i c i t i n g the experiences of caregivers through in-depth interviews. 'Family caregivers' referred to persons (spouses, adult children, and siblings) who provide assistance ( a f f e c t i v e and instrumental tasks) on an ongoing basis to r e l a t i v e s who are unable to provide for themselves as a r e s u l t of chronic i l l n e s s . 'Hospitalized e l d e r l y ' referred to persons s i x t y - f i v e years and older who are currently in-patients at 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 . In the chapter to follow, the methodology used to examine the research question for the study i s detailed. Chapter Four Methodology Introduction In t h i s chapter, the support group program, research design, 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 considerations and data analysis procedures are presented and discussed. Description of Support Group Program The support group program, 'A Course for Caregivers', was i n i t i a l l y developed by two s o c i a l workers at Holy Family Hospital (a g e r i a t r i c r e h a b i l i t a t i o n hospital) and had been delivered twice before. As other support groups are offered i n the community, i t was decided not to open p a r t i c i p a t i o n to the general public, but instead to focus on meeting the needs of families of patients of the ho s p i t a l . The group consisted of four one and one-half hour sessions occurring i n consecutive weeks from 4:30 - 6:00pm. This time of day seemed to accommodate most of the caregivers interested i n attending as many would have just 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 others had just arrived f o r a v i s i t on t h e i r way home from work. The group met i n a meeting room at the hospital and refreshments (coffee/tea) were provided. The support group was led by a s o c i a l worker (who was also the researcher for the study) and followed a semi-structured format to provide support and education. Open-ended discussions, a video and handouts were used to address the caregivers' needs and issues. A description of the video and t i t l e s of the handouts are presented i n Appendix A. The organization and content of the group sessions follows: Week 1 The Caregiver Role Introductions and a video addressing issues related to caregiving. Week2 Excuse my unusual behavior...It's only stress What i s stress, how to recognize i t and strategies f or coping. Week 3 When i s i t my time? Caring for yourself The importance of taking care of yourself and how to do i t . Week 4 Healthy Communication Communication st y l e s , t i p s for good communication, resource information, and closure. A pre-group meeting was held one week p r i o r to the st a r t of the support group program. The pre-group meeting was unique to t h i s series of the program as i t was mostly for the purpose of the research study. The meeting provided the opportunity for further explanation of the study and the requirements of p a r t i c i p a t i o n . Also, during t h i s meeting, consent forms were signed and data c o l l e c t i o n procedures began. The meeting provided the opportunity for participants to meet one another and to voice questions/concerns that they would l i k e addressed i n the group program. Rationale f o r the Research Method As stated i n Chapter Two, both q u a l i t a t i v e and quantitative research methods have been used i n t h i s study to provide a comprehensive approach that takes more f u l l y into account the complex s o c i a l r e a l i t y (Allen-Meares, 1990). The q u a l i t a t i v e component afforded the researcher the opportunity to i s o l a t e and define categories, and to look at patterns of i n t e r r e l a t i o n s h i p between the many categories (McCracken, 1988). I t has been argued that q u a l i t a t i v e methods are e s p e c i a l l y appropriate for studying older families because one of the most important c h a r a c t e r i s t i c s of families i s the interdependence of t h e i r members, and q u a l i t a t i v e methods are better suited than survey data for conceptualizing such interdependence (Matthews, 1993). As well, since the questions for which data was sought were somewhat demanding and would possibly e l i c i t less than precise answers, the more f l e x i b l e net provided by q u a l i t a t i v e techniques was appropriate (McCracken). Further, as the purpose of the study was not one of g e n e r a l i z a b i l i t y but that of access to the respondents' perspective, h i g h l i g h t i n g categories and assumptions of the caregiving experience, the intensive nature of q u a l i t a t i v e research was appropriate (McCracken). F i n a l l y , the quantitative component provided the opportunity to observe a d i f f e r e n t aspect of the same r e a l i t y , more s p e c i f i c a l l y , perceived stress of family caregivers (McCracken). Research Design The l e v e l of design for t h i s study was an exploratory-descriptive design and was chosen for several reasons. An exploratory-descriptive design i s appropriate for use with small samples as i t does not attempt to make generalizations (Reid & Smith, 1981). It i s also well suited to q u a l i t a t i v e methods as i t i s useful i n examining impact and/or e f f e c t , and i n describing the experience of the p a r t i c i p a n t s . Exploratory-descriptive designs provide a knowledge-building function, gathering information on c h a r a c t e r i s t i c s of the phenomenon studied and the presence of an association among factors (Reid & Smith). While t h i s type of design requires only a modest investment of resources, i t can s t i l l help to inform action and/or lay groundwork for more d e f i n i t i v e studies (Reid & Smith). As the study focused on a small sample siz e , the design described was appropriate. As well, the study sought to examine the e f f e c t s of group intervention on stress of family caregivers and to gain knowledge of the caregiving experience through q u a l i t a t i v e interviews and a quantitative measure. Sample Procedures Participants for the study were recruited from the seventy-f i v e bed in-patient unit and the out-patient department at Holy Family Hospital i n Vancouver. P r i o r to the i n i t i a t i o n of recruitment procedures, approval to conduct the study was granted by the University of B r i t i s h Columbia Behavioral Sciences Screening Committee for Research and Other Studies Involving Human Subjects (see Appendix B) and by Holy Family Hospital Research Committee (see Appendix C). Social workers at the h o s p i t a l provided names of family caregivers p o t e n t i a l l y interested i n p a r t i c i p a t i n g i n the support group and study. Each were i n v i t e d to p a r t i c i p a t e by l e t t e r (see Appendix D and E) and received a follow-up telephone c a l l one week l a t e r . The sample consisted of family caregivers of patients of Holy Family Hospital who attended a four week caregiver support group program. I n i t i a l l y , the sample was to include only caregivers of in-patients, but as a r e s u l t of the small sample s i z e , the sample parameters were expanded to include caregivers of out-patients as well. C r i t e r i a for i n c l u s i o n i n the study was not bound by age, gender, culture or r e l a t i o n s h i p to the patient. Family caregivers had to have attended three or more sessions of the support group program to p a r t i c i p a t e and only those family caregivers of patients at the hospital who did not attend the support group were excluded. For the purposes of t h i s study, the sample size was eight p a r t i c i p a n t s . The small sample size was chosen as i t afforded greater attention to each subject, allowing for a more detailed examination of themes (Reid & Smith, 1981). The sample size was also manageable i n terms of budget r e s t r a i n t s and time required for t r a n s c r i p t i o n . The method of sampling f o r the study was a v a i l a b i l i t y sampling as the method selects information-rich cases for i n -depth study (Patton, 1990). While the sample population was varied ( i e . respondents were of d i f f e r e n t age and c u l t u r a l backgrounds), the sample type was homogenous as a l l the parti c i p a n t s were sim i l a r with respect to the presenting problem and having had attended the support group. Instruments The instruments used i n the study included a standardized stress scale - the Perceived Stress Scale (see Appendix F), an in-depth interview using a semi-structured interview guide (see Appendix G), a Demographic P r o f i l e (see Appendix H), and a caregiver support group evaluation form (see Appendix I ) . The Perceived Stress Scale The Perceived Stress Scale (PSS) was designed to measure the degree to which situations i n one's l i f e are appraised as s t r e s s f u l (Cohen et a l . , 1983). I t was selected because i t i s sensi t i v e to chronic stress deriving from ongoing circumstances and to stress from expectations concerning future events (Cohen et a l . ) , both of which are c h a r a c t e r i s t i c s of the caregiving experience (Biegel et a l . , 1991). As well, the items on the scale make reference to the time frame of one month, and i n examining the e f f e c t s of the group on the caregiver, the time frame of the scale i s congruent with the length of the support group program. The PSS was designed to be used with samples of respondents who have a junior high school education, having easy to understand items and response alternatives (Cohen et a l . ) . Unlike other scales used i n caregiving research, the PSS i s not s p e c i f i c to any p a r t i c u l a r population group ( i e . age, gender or r e l a t i o n s h i p ) . As the PSS has been proven to possess substantial r e l i a b i l i t y and v a l i d i t y (Cohen et a l . ) , the scale i s believed to add r e l i a b i l i t y and v a l i d i t y to the study. The PSS was pre-tested with caregivers who attended a support group p r i o r to the study and i t was found to be easy to administer and complete, y i e l d i n g i n t e r e s t i n g information that could be correlated to the caregiver's s i t u a t i o n . Another consideration that resulted from pre-testing the PSS was the pot e n t i a l for d i f f i c u l t i e s i n completing the scale due to language b a r r i e r s . A decision was made to o f f e r assistance i n completing the written requirements of the study (consent form, PSS, demographic p r o f i l e ) to a l l respondents. The PSS was administered during a pre-group meeting one week p r i o r to the st a r t of the support group and again during the f i n a l session of the group program. Interviews In-depth interviews occurred i n d i v i d u a l l y with the group members between 2 and 13 days a f t e r the f i n a l group meeting. The interviews were conducted by the researcher who, as stated e a r l i e r , was the group leader and a trained s o c i a l worker. A l l of the interviews were conducted by the same researcher. Interviews allowed the caregivers the opportunity to express t h e i r experience i n t h e i r terms and informed the research with a picture of the caregiver's perspective and complex s i t u a t i o n that i s beyond responses on a scaled questionnaire (Reid & Smith, 1981). Interviews with the caregivers also afforded the researcher the opportunity to obtain c l a r i t y of issues as well as address content and process issues (George, 1990). An interview guide was u t i l i z e d because of the f l e x i b i l i t y i t o f f e r s i n a l t e r i n g the order and wording of questions i n accordance with the participants and t h e i r experience (Patton, 1990). The questions i n the interview guide were developed to examine the l i n k s between the respondents' caregiving experience, perceived stress 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 questions used were designed to e l i c i t information that related both to the t h e o r e t i c a l framework presented e a r l i e r , h i g h l i g h t i n g the caregiving stress-coping model (Chapter Three), and to 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. The interview guide was pre-tested with caregivers who had attended a previous support group as well as with colleagues i n the f i e l d . This process provided an opportunity to observe and receive verbal suggestions and non verbal clues, many of which were incorporated, adding to the soundness of the study. From the i n i t i a l d raft to i t s f i n a l form, the interview guide undenvent changes i n order to flow more smoothly and to more e f f e c t i v e l y e l i c i t the information necessary to address the research question. Open-ended questions are necessary i n order to acquire the d e t a i l e d data that permit i n t e r p r e t i v e analysis (Hutchinson & Skodol-Wilson, 1992). The interview guide began with general open-ended, non-threatening questions about the respondents' caregiving s i t u a t i o n . The questions then focused on reasons for attending the support group and ways i n which the group effected them. The interview guide was l i m i t e d to four main questions i n recognition that p a r t i c i p a t i n g i n t h i s type of an interview has the pote n t i a l to be emotionally exhausting. As well, the guide was developed with an e f f o r t to be considerate of the respondents' competing 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 r e s t r i c t i o n s . The questions as well as the probes were worded using language of everyday speech. Demographic P r o f i l e Information The demographic p r o f i l e form was designed by the researcher to capture relevant demographic and caregiving information. It was completed during the pre-group session. 'A Course for Caregivers' Evaluation Form The evaluation form was adapted from a format suggested by Barusch (1991) i n October, 1993 by the support group leader/researcher. The form was accepted for use by the Social Work Department at Holy Family Hospital and had been used successfully p r i o r to i t s use i n the research study. The questions on the evaluation form were not designed to address the research question d i r e c t l y but d i d investigate the general areas of inquiry i n a non-directive fashion. C r e d i b i l i t y and Soundness In research, each phase of the project a f f e c t s c r e d i b i l i t y and soundness of the f i n a l product. The r e l i a b i l i t y and v a l i d i t y of the PSS was addressed previously. With respect to the interview as a measure, c r e d i b i l i t y was attended to by audiotaping the interviews thereby reducing interviewer selection bias. Also, the use of the same interviewer increased the l i k e l i h o o d of a s i m i l a r presentation of questions to each respondent. Soundness of the interview guide was addressed by pre-testing the interview questions for flow, wording and relevance to the research purpose (Hutchinson & Skodol-Wilson, 1992). Further, the interviewer had good interviewing s k i l l s , using non-leading, open-ended questions which f a c i l i t a t e d the d e t a i l e d data necessary for i n t e r p r e t a t i v e analysis (Hutchinson & Skodol-Wilson). The interviewer was f l e x i b l e , pursuing the respondent's lead and c l a r i f y i n g meaning throughout. The timing (within two weeks following the group cessation and at a convenient time for the respondent) and setting (in a quiet o f f i c e i n the hospital where the group was held) of the interviews remained constant for a l l the respondents and thus contributed to soundness. F i n a l l y , the audiotaped interviews were transcribed primarily by the researcher which contributed new ideas, stimulated the interviewer's personal f e e l i n g s , and was useful i n monitoring bias (Hutchinson & Skodol-Wilson). In further considering 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 recognised that q u a l i t a t i v e studies by v i r t u e of t h e i r nature cannot be r e p l i c a t e d because the world and i n d i v i d u a l ' s experiences change (Marshall & Rossman, 1989). However, making e x p l i c i t the parameters of the study and the a p p l i c a b i l i t y of the study as previously d e t a i l e d contributed to c r e d i b i l i t y and soundness of the study. As well, the previously e x p l i c i t documentation of the perspective through which the study was conducted as well as the th 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. Also, a journal d e t a i l i n g the research process was maintained i n order to allow others to inspect procedures used and decisions made (Marshall & Rossman). The use of interview data as evidence of the researcher's inferences and i n documenting an a l y t i c constructs that appear l a t e r i n Chapter Five also add to the c r e d i b i l i t y (Marshall & Rossman). Data C o l l e c t i o n Procedures The data was c o l l e c t e d on three occasions during the study: 1. Data was f i r s t c o l l e c t e d as the pre-group meeting was held at the hospital one week p r i o r to the st a r t of the support group program. The meeting involved discussions about the group program and the study as well as completion of a consent form (see Appendix J ) , the PSS, and a demographic p r o f i l e by each pa r t i c i p a n t . While assistance i n completing the written requirements was offered to a l l respondents i n an e f f o r t to avoid 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 assistance was requested. 2. Data was next c o l l e c t e d during the l a s t 15 minutes o f the f i n a l session of the support group program as participants once again completed the PSS as well as the evaluation form. 3. F i n a l l y , within two weeks of the completion of the group, i n d i v i d u a l interviews with the participants were arranged and conducted. The researcher/interviewer conducted a l l the interviews using the interview guide. The interviews began with informal conversation and proceeded to review the purpose of the study, issues of c o n f i d e n t i a l i t y and e t h i c a l considerations. The f i r s t question i n the guide was asked and an e f f o r t was made to ask the following questions i n the same order for each interview. However, additional questions were asked i f relevant to the study. The interviews ranged i n length from 45-60 minutes. They were audiotaped and l a t e r transcribed for purposes of analysis (see Appendix K for an example of an interview t r a n s c r i p t ) . Assumptions It was assumed that a l l respondents were able to r e f l e c t and comment on t h e i r caregiving experience. It was also assumed that data emerging from the PSS, demographic p r o f i l e s , interviews and evaluation forms was an honest and accurate representation of the respondents' experience. Limitations The primary l i m i t a t i o n s of t h i s study were as follows: 1. One must recognize that the broad i n c l u s i o n of respondents (differences i n age, c u l t u r a l background, re l a t i o n s h i p to the patient) may mask the revelation of themes p a r t i c u l a r to c e r t a i n subgroups (Zarit & 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 to increase the homogeneity of the sample, but at the same time may have further reduced the number of appropriate 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 group and study was voluntary ( s e l f - s e l e c t e d ) , both the least stressed and the most severely stressed may be underrepresented (McCallion et a l . , 1994). Caregivers i n s e l f - s e l e c t e d samples tend to be concerned enough about caregiving to seek support, but are not so involved i n caregiving that they are unable to get out to p a r t i c i p a t e i n a research or support group program (Malonebeach & Z a r i t , 1991). Excessive and competing time demands associated with caregiving may c e r t a i n l y influence the s e l f - s e l e c t i o n sample process (Dura & Kiecolt-Glaser, 1990). Therefore, caregivers who chose to p a r t i c i p a t e may be d i f f e r e n t from those who did not (Barusch, 1991). 3. In q u a l i t a t i v e research, the interviewer/investigator serves as the instrument i n the c o l l e c t i o n and analysis of data, using a broad range of his/her own experience, imagination and i n t e l l e c t (McCracken, 1988). However, the interviewer must ensure that the testimony be e l i c i t e d i n an as unobtrusive, nondirective manner as possible i n order to capture the categories and l o g i c of the respondent and not that of the interviewer's own l o g i c and categories (McCracken). The interviewer for the study was a trained s o c i a l worker, s k i l l e d i n interviewing techniques, educated i n q u a l i t a t i v e research interviewing yet inexperienced i n conducting q u a l i t a t i v e research interviews. As one strategy to attend to t h i s type of l i m i t a t i o n , Whyte (1982) suggests evaluating the degree of directiveness of a question/statement made by the interviewer by examining i t i n the context of what immediately preceded i t during the interview. The scale ranges from low to highly d i r e c t i v e responses beginning with responses that encourage the respondent to continue ( i e . Uh-huh, a nod of the head), r e f l e c t i v e statements, probing the l a s t remark made by the respondent, probing an idea preceding the l a s t remark, probing an idea expressed i n an e a r l i e r part of the interview, and introducing a new top i c . The interviewer i n t h i s study examined a segment of each interview p r i o r to conducting the next interview i n order to monitor and ensure that the testimony was e l i c i t e d i n a unobtrusive and nondirective manner. 4. An important consideration i n data c o l l e c t i o n was the sign 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 leader) and the researcher being the same person. Research outcomes may be effected as a r e s u l t of the practitioner/researcher experiencing r o l e c o n f l i c t ( P r o f f i t t , Byrne, Namei, King, Schmidt & Brott, 1993). S o c i a l workers, who are t r a d i t i o n a l l y trained to provide service to consumers i n response to i d e n t i f i e d needs, may struggle with assuming the r o l e of helper during the research interview. Adhering to the ri g o r s of s c i e n t i f i c methodology has led to a separation of the rol e s of p r a c t i t i o n e r and researcher, often exacerbating e x i s t i n g c o n f l i c t s i n the research endeavor (Robinson & Thorne, 1988). However, support does e x i s t for an a l t e r n a t i v e approach, that of blending of the p r a c t i t i o n e r and researcher roles as the roles are so c l o s e l y intertwined that each r o l e i n fact stimulates the other (Robinson Se Thorne) . I t has been stated 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 often has d i r e c t access to respondents and i s f a m i l i a r with the problem area ( K i l p a t r i c k & Lockhart, 1991). The researcher i n t h i s study attended to the pot e n t i a l for ro 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 interviewer's r o l e i n each interview and by debriefing with a colleague before preceding with the next interview. Another issue as a r e s u l t of the blended role was the r i s k of bias. The r i s k was present as respondents who l i k e d the group leader are more l i k e l y to report p o s i t i v e l y with reference to the group when the group leader i s the one asking the questions (Biegel et a l . , 1991). To control for the potential bias, the in-depth interviews occurred a f t e r the group was completed. As well, respondents were asked to respond honestly as t h e i r information was to be used i n improving the program and future planning for caregivers. 5. The size of the sample was small by vi r t u e of the study being based on one series of the four week support group program, and a maximum of 14 individ u a l s p a r t i c i p a t e i n the program at one time. The sample size was also l i m i t e d by the number of partici p a n t s who attended three or more group sessions. However, a l l who attended the program did p a r t i c i p a t e i n the study. 6. I t must be accepted that the findings of the study are context bound due i n part to the small sample size and q u a l i t a t i v e method used. The findings would be most applicable 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 findings may be more widely applicable to si m i l a r community based or self-help caregiver support groups. However, the extent of a p p l i c a b i l i t y cannot be determined by t h i s study. E t h i c a l Considerations Permission to conduct t h i s study was granted by the University of B r i t i s h Columbia Behavioral Sciences Screening Committee for Research and Other Studies Involving Human Subjects (see Appendix B). Permission was also granted from the Research Committee at Holy Family Hospital (see Appendix C). Each pote n t i a l respondent of the study received an information l e t t e r d e t a i l i n g the purpose of the study and the nature and extent of the involvement requested. The l e t t e r also stated that they were under no obligation to p a r t i c i p a t e and that a decision not to p a r t i c i p a t e or to withdraw at any time would not a f f e c t the receipt of present or future service. During the pre-group meeting, respondents completed the consent form which again e x p l i c i t l y stated what was required of them, reinforced that information would be held i n confidence by the researcher, that i d e n t i f y i n g information would be omitted, and ensured that t h e i r receipt of service from the hospital would i n no way be affected by t h e i r involvement i n the study. P r i o r to the interview, these points were repeated as well as c l a r i f y i n g each respondents' r i g h t to decline any answer. Respondents were asked to record 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 l a b e l the audiotape i n the same manner following the interview to ensure anonymity yet provide a method to l i n k the two measures. Upon completion of the interview, the a v a i l a b i l i t y of follow-up services was presented i n the form of provision of the researcher'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 Analysis The method of data analysis employed both quantitative and q u a l i t a t i v e methods. F i r s t , c alculations were performed to determine changes i n the respondents' perceived stress score. The data from the interviews was then used to add breadth and depth to the quantitative analysis of perceived stress. The intent of the q u a l i t a t i v e analysis was to construct an exhaustive des c r i p t i o n of the major themes that emerged from the interviews. The interview data was organized and sorted using a modified grounded theory approach (Straus, 1989). The tape-recorded interviews were f i r s t transcribed and each tape l i s t e n e d to i n d i v i d u a l l y p r i o r to the coding process to capture a f e e l i n g for the respondents' experience. Using l i n e by l i n e analysis, words, phrases and/or statements that pertained to the research question were underlined and extracted from the t r a n s c r i p t s as elements. The elements were written using the respondents' language i n the r i g h t hand margin of the t r a n s c r i p t . The elements were then clustered to form conceptual themes, reducing the number of units to be worked with. Care was taken to stay grounded i n the o r i g i n a l t r a n s c r i p t s by using verbatim quotations i n the analysis process. Memos were also used by recording ideas that ceime to mind during the coding process i n the l e f t hand margin of the t r a n s c r i p t . A coded t r a n s c r i p t i s provided as an example (see Appendix K). Upon completion of coding, themes were referred back to the statements i n the t r a n s c r i p t s . Themes which were unique to a p a r t i c u l a r interview were not ignored but were recorded separately. F i n a l l y , the themes were organized to present an o v e r a l l understanding of the data. An examination of each respondent's PSS score, demographic p r o f i l e and caregiving s i t u a t i o n was conducted i n an attempt to i d e n t i f y connections and contribute to addressing the research question. Information from the evaluation forms were reviewed, c o l l a t e d and used to 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 as a group wrote and what was l a t e r stated i n the interviews. Summary In t h i s chapter, the support group program that was the focus of the study was described as well as the rationale for use of q u a l i t a t i v e and quantitative research methods to conduct the study. The l e v e l of design for the study was an exploratory-d e s c r i p t i v e design. The sample of family caregivers was r e c r u i t e d from Holy Family Hospital using a method of purposeful sampling. The instruments used to c o l l e c t data included the PSS, a demographic p r o f i l e , an in-depth interview using a semi-structured interview guide, and a group evaluation form. Calculations were performed on the data obtained from the PSS to determine changes i n the respondents' perceived stress score. A modified grounded theory approach was used i n the q u a l i t a t i v e analysis of the interview data. Permission to conduct the study was granted by the Research Committee at Holy Family Hospital and the University of B r i t i s h Columbia Behavioural Sciences Screening Committee for Research and Other Studies involving Human Subjects. E t h i c a l considerations were attended to throughout the study. In the following chapter, the findings of the study are presented. Chapter Five Presentation of Findings Introduction In t h i s chapter, the sociodemographic c h a r a c t e r i s t i c s of the sample w i l l be presented and discussed. The findings from the in-depth interviews, the PSS and the evaluation form w i l l then be presented. Sociodemographic Ch a r a c t e r i s t i c s of the Sample The sociodemographic c h a r a c t e r i s t i c s of the respondents are det a i l e d i n Table 1. The respondents ranged i n age from 52 to 73 years, were predominately female and a l l were married. The re l a t i o n s h i p to the care receiver was either as a spouse or adult c h i l d . Three out of eight respondents had been providing 24-hour care. Only one respondent held a job at the same time. The care receivers were between the ages of 65 and 87 years with the exception of one care receiver being 55 years old. Half of the care receivers were female and half were male. The majority were married and the remaining were widowed. Most of the care receivers had suffered strokes, with only two experiencing other d i s a b i l i t i e s (hip surgery related to a r t h r i t i s ) . Five of the care receivers were currently i n hospital and three were outpatients of Holy Family Hospital. The sociodemographic c h a r a c t e r i s t i c s of the respondents and care receivers are summarized i n Table 2. Caregiver C h a r a c t e r i s t i c s Age Gender M a r i t a l Status Rel a t i o n to Care Receiver Length of Time as a Caregiver No. of Hours/Day Providing Care Employment status Respondent *1 60 Female Married Spouse 5 months 2.5 hours Not employed Respondent S 2 _ 58 Female Married Adult C h i l d 6 years 1 hour Not employed Care Receiver C h a r a c t e r i s t i c s Age Gender M a r i t a l Status Type of D i s a b i l i t y Connection to Hospital 65 Male Married Stroke Inpatient 86 Female Widowed Hip surgery Inpatient Caregiver c h a r a c t e r i s t i c s Age Gender M a r i t a l status R e l a t i o n to Care Receiver Length of Time as a Caregiver No. of Hours/Day Providing Care Employment Status Respondent t 3 _ Respondent #4 66 Female Married Spouse 4 months 5-6 hours Retired 66 Female Married Adult C h i l d 3 months 24 hours Retired Care Receiver C h a r a c t e r i s t i c s Age Gender M a r i t a l status Type of D i s a b i l i t y Connection to Hospital 68 Male Married stroke Inpatient 87 Female widowed stroke Outpatient caregiver C h a r a c t e r i s t i c s Age Gender M a r i t a l Status Relation to Care Receiver Length of Time as a Caregiver No. of Hours/Day Providing Care Employment status Respondent *5 73 Male Married Spouse 1 month 8 hours Retired Respondent 16 64 Female Married Spouse 6 months 24 hours Retired Care Receiver C h a r a c t e r i s t i c s Age Gender M a r i t a l Status Type of D i s a b i l i t y Connection to Hospital 72 Female Married stroke Inpatient 70 Male Married stroke outpatient Caregiver c h a r a c t e r i s t i c s Age Gender M a r i t a l status Relation to Care Receiver Length of Time as a Caregiver No. of Hours/Day Providing Care Employment Status Respondent #7 52 Female Married Adult c h i l d 3 months 3 hours F u l l time Respondent | 8 _ 55 Female Married Spouse 1 year 24 hours Not employed Care Receiver C h a r a c t e r i s t i c s Age Gender M a r i t a l status Type of D i s a b i l i t y Connection to Hospital 72 Female Widowed Hip surgery Inpatient 55 Male Married stroke Outpatient Summary of Sociodemographic C h a r a c t e r i s t i c s of the Sample Caregivers Age 52-73 years of age Gender 7 females and 1 male M a r i t a l status Married Rel a t i o n to Care Receiver 5 spouses and 3 adult c h i l d r e n Length of time as a Caregiver 7 providing care > s i x months 1 providing care f o r 6 years No. of Hours/Day Providing Care 1 hour to 24 hour care 3 provide 24 hour care Employment Status 4 r e t i r e d 3 unemployed 1 employed f u l l - t i m e Care Receivers 55-87 years of age 4 females and 4 males 5 married and 3 widowed 6 stroke and 2 hip surgery 5 inpatient and 3 outpatient Age Gender M a r i t a l status Type of D i s a b i l i t y Connection to Hospital I t i s i n t e r e s t i n g to note that for care receivers who were married, t h e i r spouse was the primary caregiver. For care receivers who were widowed, adult children were the primary caregivers and i n each of these cases, the caregiver was a daughter. This sample accurately r e f l e c t s the l i t e r a t u r e with respect to describing family caregivers (Brody, 1990; Horowitz, 1985; S t o l l e r , 1983). Qualitative Analysis of Interviews From analysis of the interview data, themes emerged and yielded s i x stages which contribute to understanding of the caregiving experience. The order of the stages r e f l e c t the natural progression respondents took i n sharing t h e i r caregiving experiences. The stages and associated major themes are presented i n Table 3. For c l a r i t y , each stage i s more f u l l y described by highlighting the major themes and elements that comprise each stage and by using excerpts from the interview data as examples. STAGE; Contributing Factors To Caregiver Stress Throughout the interview and i n response to i n q u i r i e s regarding d i f f i c u l t parts of the caregiving job, several themes surfaced as contributing factors to stress including care r e c e i v e r s ' behavior, care receivers' d i s a b i l i t y and need for continuous care, provision of physical, emotional and instrumental support, concern for the future, decision making, and competing r e s p o n s i b i l i t i e s . Summary of Stages and Themes stage: Contributing factors to caregiver stress Themes : Care r e c e i v e r s ' behavior Care r e c e i v e r s ' d i s a b i l i t y Continuous care Provision of physical, emotional and instrumental support Caregivers' concern for the future R e s p o n s i b i l i t y 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 of caregiving on the caregiver Themes: Ph 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 reaction r e l a t e d to caregiving stage: Support systems and coping mechanisms Themes: Importance of family as a support Caregiver group as a support Cognitive ways of coping Stage : The group experience Themes: Informative and educational Supportive Stage: E f f e c t s on the caregiver as a r e s u l t of group p a r t i c i p a t i o n Themes: Increased i n s i g h t into caregiving Cognitive changes i n coping with caregiving Caregivers' behavioral changes Minimal change i n perceived stress Stage: Caregivers' i n d i v i d u a l and s i t u a t i o n a l variables Themes : 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 with care receiver Theme; Care receivers' behavior The respondents reported various c h a r a c t e r i s t i c s of the care receiver'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 behaviors were a r e s u l t of the d i s a b i l i t y , others were related to the care receivers' adjustment process. Behaviors included crying, ignoring the caregiver, resistance to accepting services, lack of communication, being demanding, mood swings, poor memory, verbal r e p e t i t i o n , and complaining. As an example: He could sort of ignore me or do whatever he fee l s l i k e . So i t i s sometimes hard to accept that when I am there, h e ' l l l i s t e n to his record and read a book at the same time. (Rl) But now i t i s a wave...we are on an upper. He laughs and smiles and he giggles and I don't know how long i t i s going to l a s t . I never know from one day to the next what to expect. (R6) She doesn't remember because her mind has been affected by the stroke. Ten or f i f t e e n minutes and she i s c a l l i n g me again. She's l i k e a record that's being played over and over again. I t just drives me up the wall. (R4) Theme ; Care receivers' 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 to functional l i m i t a t i o n s of t h e i r care receivers r e s u l t i n g from the chronic d i s a b l i n g i l l n e s s . As an example; Waiting for him to f i n d the word. I'm i n a hurry and he's r i g h t away upset. It's the d i f f i c u l t y there of expressing 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 that he i s going to take the wrong step and f a l l . (R6) Tomorrow i s the l a s t day [of therapy] for him. I think they cannot make him improve. He's not improving as much as they want and so they're going to stop. (R8) Theme; Continuous Care The respondents c l e a r l y indicated the time-consuming and intensive nature of providing care by describing themselves as being needed on a d a i l y basis, 24 hours/day, providing constant and t o t a l care often with few or no breaks. As an example: The actual caregiver i n the small even minute-to-minute or hour-to-hour needs of the person who needs care. (Rl) I'd say i t i s a 24-hour helpmate, to be there. (R3) It' s r e a l l y a t o t a l looking a f t e r a person who i s not able to do so himself. (R4) And I ' l l stay [up] l a t e purposely... from 10;00pm - 1:00pm so he can go to the washroom...then he w i l l not wake up again...then I f e e l safe to sleep. He i s under my supervision for 24 hours...I become t i r e d of a l l day long taking care of him. (R8) Theme: Provision of physical, emotional and instrumental support In discussing t h e i r roles as caregivers, the respondents revealed the many demands faced i n meeting the needs of care receivers, including physical support ( i e . helping with a bath, brushing teeth, l i f t i n g a wheelchair, a s s i s t i n g with walking and movement, helping with exercises), emotional support ( i e . providing reassurance, moral support and encouragement, dealing with care receivers' depression, adjustment issues and acceptance of d i s a b i l i t y ) , and instrumental support ( i e . household management, meal preparation, b i l l payment, transportation, making doctor appointments). As an example: When he wakes up, I have to brush his teeth, wash his face. If I have to take him to the doctor's, I have to change him, then before that I have to feed him breakfast...lunch and dinner. I have to cook special meal for him. (R8) I t i s going to be a major thing now because she i s r e a l i z i n g , i t ' s four months...when am I getting better and I think t h i s i s a stage when there's going to be r e a l depression se t t i n g i n . (R4) I f e e l we just gotta just keep giving them hope. (Rl) When I looked at that handout you gave us of a l l the tasks [that need to be done] and i t was me, me, mel (R6) Theme: Caregivers' concern for the future Concern for the future i n many respects was prevalent throughout each interview. Respondents shared concerns regarding the care receiver's mental well-being, physical a b i l i t i e s and future d e t e r i o r a t i o n . References to general and pervasive worry about the future and feelings of uncertainty were common. As an example : Course we don't know what he w i l l be capable of when he comes home yet...I mean I think I know what i t w i l l be l i k e , r i g h t , but I don't know for sure...So t h i s i s sort of i n the back of your mind, i f he has another stroke. (Rl) Going up and down the s t a i r s worries me. Her being i n the s i t u a t i o n that she i s with my sister-in-law i s another problem that I worry about. Her being l e f t alone at night... Worry and concern about how things w i l l work out...The thought of taking care of her as cl o s e l y as I do now. (R7) Just worrying about my wife... and I am concerned about her. Well, I don't want her to have a relapse or die, quite frankly. (R5) You know, you don't want to be worrying about i t but there again, at night, i t come f l i t t i n g i nto your mind...and I say you s i l l y o l d lady, what are you worrying f o r . Leave i t f or tomorrow. Well that i s easier said than done. (R3) Theme: Responsibility for decisions The interview data revealed that caregivers were often faced with a va r i e t y of decisions, many of which they have never encountered before. Often the sole r e s p o n s i b i l i t y for making decisions seemed to accompany t h e i r r o l e and added to t h e i r struggle. As an example: We should f i n d an apartment...Yesterday we talked about i t and he d i d say he didn't want to [move] but I might have to go ahead and just do something...! can see some d i f f i c u l t y a r i s i n g when a decision has to be made. (Rl) I give i t a l o t of thought but I can't come to a decision or I haven't so fa r , I haven't acted. More and more i t looks as i f mom w i l l have to be placed i n a care 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 the ship i s sinking and the l i f e r a f t can only take so much and who goes i n and who doesn't. That kind of a s i t u a t i o n and i t looks as i f I w i l l have to c a l l the shots. (R4) Theme; Competing r e s p o n s i b i l i t i e s A majority of the respondents discussed previously held r e s p o n s i b i l i t i e s that were now competing with caregiving r e s p o n s i b i l i t i e s for 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 included spouse/children, other aging parents and work. As an example: And then I have my husband's mother. She l i v e s alone, she's going to be 84 i n March, so...my husband i s an only son, so you know we're sort of looking a f t e r her as well. (R2) You have to handle your own family as well 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 interview data indicate several factors that place demands on caregivers, contributing to s i g n i f i c a n t l i f e s t y l e changes and to the experience of caregiver stress. The e f f e c t s of providing care on the caregiver grew naturally from the discussion and formed the next stage. STAGE: E f f e c t s Of Caregiving On The Caregiver Evidence of s i g n i f i c a n t and often long l a s t i n g e f f e c t s of caregiving on the caregivers was overwhelming. The e f f e c t s of caregiving varied for each caregiver i n type, number and i n t e n s i t y yet c e r t a i n l y did e x i s t to some extent for a l l . The consequences indicated by the respondents were clustered into themes of physical, s o c i a l and emotional e f f e c t s of caregiving. Theme; Physical e f f e c t s of caregiving Physical e f f e c t s of caregiving referred to physical exhaustion, general aches and pains, neglected personal care, and loss of weight. As an example; I was doing everything and I was r e a l l y getting 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 naturally you lose weight because I wasn't making meals three times a day, I was here [at the h o s p i t a l ] . (R6) [I am] nursing elbow j o i n t s and back pain r i g h t now...I kinda f e e l run down a l l the time...I know I have l o s t a few pounds...and I'm kind of constipated to some extent because I don't have a quiet time. (R4) I have become very exhausted...! was los i n g a l o t of hair. Big patches, the largest ones were larger than a loonie...My stress, I couldn't eat. I had no time to eat. (R8) Theme; Soc i a l e f f e c t s of caregiving The s o c i a l e f f e c t s of caregiving referred to decreased hobbies, l i t t l e time for exercise, no personal time or family 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 for us (re f e r r i n g to her husband)...Haven't got a thing r i g h t now. No hobbies. No going out...It becomes impossible to have a l i t t l e chat on the phone. (R4) I can't go f i s h i n g , or gardening or play bridge l i k e I used to do. (R5) Our sort of s o c i a l l i f e , we had an active s o c i a l l i f e , well, now i t ' s sort of down to almost n i l . . . I mean we are always at home. (R6) I cannot even go out with my friends, you know. He would not f e e l comfortable i f he stays too long with my friends and my friends w i l l not f e e l comfortable f o r , you know, neglecting him, not t a l k i n g to him. Then who wants to go out with me again. (R8) Theme; Emotional reaction related to caregiving The interview data revealed the range and mix of emotions evoked by the caregiving experience including hope and optimism, i s o l a t i o n and s e l f - p i t y , worry, nervousness, feelings of resignation and g u i l t . As an example: Gives you heart...It sort of gives you hope, you know, that perhaps as time goes on, h e ' l l get stronger....! just f e e l a b i t sorry for myself I guess...But sometimes I f e e l that something comes up and I am not handling i t . (Rl) No matter what I did, nothing would s a t i s f y him and then he would sort of wave me of f and that i s when I would get upset. I think oh I don't know i f I can handle t h i s . I t i s l i k e a rejection...I've never, never experienced being weakened l i k e t h i s , you know, just bat his eye, and I could cry. Mind you maybe i t s seeing him l i k e that too, you know, i t ' s shocking. I just f e e l bad to see him l i k e that. (R6) The g u i l t won't go away I f i n d , whether I just continue l i v i n g the present way or whether I put mother i n a care f a c i l i t y , there i s g u i l t one way or the other. G u i l t now because I f e e l I am leaving my husband on his own al o t or i f I put mom i n there, I f e e l sad because I put her i n there so the g u i l t part s i t s heavily. (R4) In sum, respondents reported physical, s o c i a l and emotional e f f e c t s r e l a t e d to the incumbent demands and stresses of t h e i r caregiving r o l e . Support systems of the respondents and t h e i r ways of coping with the challenges of caregiving tended to follow and formed the next stage. STAGE; Support Systems And Coping Mechanisms Analysis of the interview data revealed several themes which indicated sources of support and coping mechanisms for respondents i n the caregiver r o l e . More s p e c i f i c a l l y , the importance of having other family members and the value of attending the caregiver support group were referred to frequently as well as cognitive ways of coping with t h e i r s i t u a t i o n s . Theme; The importance of having family as a support Though referred to somewhat d i f f e r e n t l y , the value of support from other family members i n the caregiving endeavour was addressed by each respondent. Some recognized the value of family by acknowledging t h e i r family members as assets while others pointed out t h e i r misfortune i n the absence of family support. Support from family members referred mostly to emotional support but also to instrumental assistance. As an example: We don't have any r e l a t i v e s here, see cause that makes a difference too. Not having any r e l a t i v e s here...But when things are not going well, a l l of a sudden you are aware that you don't have... anyone l i k e that to c a l l on. (Rl) I f e e l for some of them there that have nobody and I do have that l i f e l i n e with my family...So they were a wonderful source of strength. (R3) . . . i f I needed help, a phone c a l l . That's a l l i t would take and they would be there. I would just have to say I need you and they would be there...Cause i f I f e e l sort of down and I want to 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; Caregiver group as a support In discussing the reasons for attending the caregiver group, conversations indicated that the group provided an opportunity to learn about caregiving and to be supported i n the caregiving e f f o r t . More s p e c i f i c a l l y , the group environment decreased the respondents' sense of i s o l a t i o n and allowed for the learning of resources, how to cope and provide care. As an example: Sort of for the support...perhaps to hear what other people were going through or maybe gone through...To know that you are not alone because I did f e e l very much alone. I didn't know anybody who was going through the same thing so you are r e a l l y completely on your own. So i t was nice to have a group where you were a l l having the same problems...and to hear some of the things I hadn't thought of...and i t was nice to hear that one man whose wife was improving. (Rl) I knew I would be a caregiver 24 hours ...and I wanted to learn and see what there was out there for help and how other managed and i t has helped. But i t was more to l i s t e n to others...now I am so close to i t , i t has helped quite a b i t . (R3) Not being i n t h i s p o s i t i o n before, I didn't r e a l l y know what was expected of me and I f e l t by attending the seminars that you'd get some sort of idea of what i s expected of you and what you should expect of him. (R6) I wanted to f i n d out and make sure I was doing the r i g h t thing. I t makes you f e e l a l i t t l e better that you're not alone i n that group. (R5) Theme; Cognitive ways of coping The interview data revealed that, i n coping with t h e i r caregiving situations, the respondents employed cognitive methods of coping. More s p e c i f i c a l l y , respondents indicated attempts at accepting the things they could not change and reframing the s i t u a t i o n more p o s i t i v e l y . Taking one day at a time and having an understanding of the i l l n e s s was also u s e f u l . As an example: You know you think we'll never be able to do t h i s or that but when you r e a l l y think about i t , i t ' s not r e a l l y that important. It i s just the road that has changed and i t i s not necessarily bad. (R3) I t r i e d to handle to the stress as phi l o s o p h i c a l l y as possible...to say that that i s the nature of the i l l n e s s and therefore I shouldn't get annoyed. (R4) While friends, formal supports ( i e . homemaking help), and r e l i g i o n were mentioned by some as playing a part i n t h e i r support system, an emphasis on family support, support group involvement and cognitive coping mechanisms were of more s i g n i f i c a n c e to the respondents. STAGE; The Group Experience I t was i n t e r e s t i n g to f i n d that throughout the interviews respondents continually made reference to the experience of being i n a caregiver group. The comments represented two themes, i n d i c a t i n g the group experience to have been informative/ educational and supportive. Theme; Informative and educational The respondents indicated that the group experience was b e n e f i c i a l because of the information shared regarding resources and caregiving issues i n general. As an example; I think i t i s educational. The d i f f e r e n t ideas and where to get d i f f e r e n t things, resources that could help you. (Rl) I found the group i n t e r e s t i n g . Problems varied and sharing of ideas. (R3) Well, you sort of learn that maybe one way of doing something could be more b e n e f i c i a l to do i t another way and somebody i n the group has suggested t h i s , so therefore you f e e l , well yes I have learned something. (R6) ...because you have given some places, names for us to get i n touch with i f we need to. (R8) Theme: Supportive A pervasive theme among the respondents was with regards to the support that was received and f e l t within the group. The word 'supportive' was used by the respondents as they described f e e l i n g less i s o l a t e d and reassured. Also, they heard experiences of others that were si m i l a r to t h e i r own, comparing and r e l a t i n g to others, and normalizing t h e i r f e e l i n g s . As an example: It f e l t [good] to know that everybody there was involved i n the same sort of problems.. And so i t f e l t good to know that you were not alone. Well i t was support to know that there are other people who are going through exactly the same or almost exactly the same as what you are going through. (Rl) To see someone else and be able to say, you know, I was l i k e that l a s t week, and you can empathize with them. That i s comforting. You don't mind t a l k i n g about things because you know that either somebody's experiences the f e e l i n g or had i t before or say they might get to f e e l l i k e that too. I think i t i s very good when we are 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 for awhile. And sharing s i m i l a r situations and problems helped that's for sure. (R7) ...r e a l i z e d just the role of the caregiver and I found that possibly, part of i t , I was doing r i g h t . (R6) The fact that there are other people doing exactly the same thing that I was, looking a f t e r patients, and that they were surviving and I was going to survive too. (R5) Overall, the themes that evolved regarding the group experience were p o s i t i v e and indicated s a t i s f a c t i o n among respondents. STAGE: E f f e c t s On The Caregiver As A Result Of Group P a r t i c i p a t i o n Interview data revealed respondents' perceptions of the ef f e c t s of p a r t i c i p a t i n g i n the support group. The themes that emerged referred to an increase i n insight, cognitive changes i n coping and behavioral changes. Theme; Increased insight into caregiving One e f f e c t of p a r t i c i p a t i n g i n the caregiver group for the respondents was a better understanding of the caregiver r o l e , recognition of how providing care e f f e c t s each of them, and t h e i r l i m i t s i n providing care. Respondents also stated having gained a greater awareness, f e e l i n g more informed and prepared. As an example; I am more aware of what could happen and how things could be. Having that information, i t won't seem so bad when something happens that I don't understand or can't do anything about. Because I have the information that caregivers can get into d i f f e r e n t emotional states. So hopefully having that knowledge, I won't f e e l bad about i t , at least I ' l l know that t h i s could be f a i r l y normal or acceptable. (Rl) I guess I was a l i t t l e a f r a i d of or not exactly a f r a i d but the fear of the unknown but because now I am more aware of what i t i s a l l about. And I believe that has been very e f f e c t i v e . (R3) It's a f u l l - t i m e job...I r e a l l y just can't p u l l you up and down the s t a i r s . . . ! don't know i f I could have my mom l i v e with me f u l l - t i m e . I know I think i t would be a big s t r a i n on me. I guess I'm s t a r t i n g to r e a l i z e well you know ac t u a l l y I'm doing her a favor. (R2) I understand his p l i g h t a l o t better. (R6) Theme; Cognitive changes i n coping with caregiving When questioned about changes that resulted from attending the group, responses indicated the development of d i f f e r e n t perspectives to cope more e f f e c t i v e l y with t h e i r caregiving s i t u a t i o n . Such cognitive reframing included a more po s i t i v e outlook on caregiving, increased sense of confidence, a willingness to take one day at a time and acknowledgement of the caregiver having needs to be f u l f i l l e d . As an example: I think I see i t i n a more p o s i t i v e l i g h t now because hearing the group t a l k and how some people were finding i t r e a l l y a [positive experience]. So i t was nice to hear the d i f f e r e n t p o s i t i v e s . So I think the p o s i t i v e things helped me a l o t . (Rl) I think I ended up with more confidence. I've accepted i t . And that helps too, you know, because you just have to sort of anticipate what could happen and what you want to do, and t r y to do some planning f o r i t . (R5) It r e a l l y helped a l o t because I decided that I am not as bad of f as the other l a d i e s . . . ! don't think of i t as stress anymore. I just figure I am going to help him period...But just facing i t day to day. I don't get hyper anymore. At one time I'd get excited because I didn't do something r i g h t . But now I don't. I think, hey I gotta l i v e too. (R6) You r e a l i z e that maybe ! should f e e l that way (relaxed) too. I'm not going to solve a l l the problems whether I carry them on my shoulders or not. (R7) It has been a l i t t l e easier to say... allow myself to come to t h i s decision of putting her into a care f a c i l i t y and that decision was very hard for me to come to. (R4) But before you can come to that p o s i t i v e , you have to go though t h i s stress and negative and then you can say 'what's the point'. (R7) Theme: Caregivers' behavioral changes The respondents spoke of changes i n how they would perform t h e i r caregiving duties and i n coping with t h e i r s i t u a t i o n . Changes included asking f o r help, using resources, better communication, and encouraging the care receivers' independence ( i e . decreasing caregiver's tasks). Most prevalent though were coiranents about how they would better take care of themselves as r e s u l t of discussions i n the group. As an example: Trying to look a f t e r myself a l i t t l e b i t better. And asking for help. (Rl) I t c e r t a i n l y reinforced looking a f t e r yourself...and those words have helped me formulate what I should do. (R4) I think I would t a l k to [mother] more about i t and explain, and r e a l l y be honest with her and involve her i n whatever we're thinking of doing. (R2) You have to s t a r t asking for help. You have to open up and we can't do everything p e r f e c t l y . I have started to r e a l i z e ...that you just have to l e t go. So I found that i t did help as I r e f l e c t e d back to the meetings and l i s t e n i n g to some of the others. (R3) I l i k e d that the caring for myself emphasized the need to take care of myself. And I'm going to see our G.P. and I'd even deferred seeing our dentist and I'm going to see him next week and that i s part of the reason. (R5) . . . i f I were doing something and sort of had the opportunity to discuss i t with the group then you go home sort of aligned with the idea and l e t ' s t r y i t t h i s way...Now I am t r y i n g to make him independent. I f e e l better that I'm ..helping him to t r y and be independent. (R6) Theme: Minimal change i n perceived stress In response to queries regarding changes i n perceptions of t h e i r stress as a r e s u l t of group p a r t i c i p a t i o n , respondents indicated minimal or no differences i n t h e i r experience of stress. As an example: I am not r e a l l y sure i t has made that much difference with regards to stress. Mainly because I s t i l l look to prayer to r e l i e v e stress. I get a great peace with prayer and so I am not sure, i t could have, I'm just not sure. (Rl) No, i t i s just that I think my nerves may be a b i t worse then when I f i r s t joined because I am getting more of the caregiver job as h e ' l l be coming home soon. (R3) Despite the respondents' reports of acquired i n s i g h t s , cognitive changes i n coping and behavioral changes, the respondents reported l i t t l e or no change i n t h e i r perception of stress r e l a t e d to caregiving. Descriptions of the f i n a l stage, the caregivers' i n d i v i d u a l and s i t u a t i o n a l variables, provides some in s i g h t i n t o t h i s finding. STAGE; Caregivers' Individual And Si t u a t i o n a l Variables While respondents were s i m i l a r i n that they a l l were providing care to a ch r o n i c a l l y i l l r e l a t i v e , the interview data revealed i n d i v i d u a l differences among them which made each s i t u a t i o n unique. The caregivers' i n d i v i d u a l and s i t u a t i o n a l variables e f f e c t each of the previous stages and included 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 with care receiver, generational and c u l t u r a l expectations, and appraisal of s i t u a t i o n . As an example: So much has to do with my physical you understand. Cause when you f e e l well you can handle everything. I mean when I f e e l well I am thinking of a l l the things I want to do. (Rl) So I thank G-d that I've got these women (refe r r i n g to her daughters) around that, as nuisance as they are sometimes, a l l I have to do i s say h i and they say what i s the matter. They are there f o r me. (R3) ...the s i t u a t i o n that she i s i n [with my sister-in-law] that's quite a pressure, quite s t r e s s f u l . (R7) I mean we have been together for 48 years so there i s no way that our l i f e could be separated...we're both i n i t together. (R3) I know that he loves me, he appreciates what I'm doing for him. He said I'm the best wife 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 also have a nervous breakdown. (R8) Because mom i s the l a s t of the seniors i n our family. A l l the others have passed away and because she i s the l a s t and of course we have aged i n the meantime, she gets the short end of the s t i c k I f e e l . (R4) Borne from the q u a l i t a t i v e analysis of the interview data, an understanding and conceptualization of the caregiving experience, caregiver stress and the ef f e c t s of support group involvement on stress developed. Elements clustered into themes which formed the presented stages. Findings indicate the existence of many contributing factors to caregiver stress and the various e f f e c t s of caregiving on the caregiver. The interview data revealed the importance of support systems i n coping with the challenges of providing care. Moreover, the findings highlight the benefits derived from p a r t i c i p a t i n g i n a caregiver support group despite l i t t l e or no change i n perception of stress r e l a t e d to caregiving. Quantitative analysis of PSS The respondents pre-and post-group scores from the PSS were tabulated and are presented i n Table 4. To further i l l u s t r a t e the data from the PSS, the scores have been transposed into a bar graph i n Figure 3. While the PSS i s not a measure of psychological symptomatology, the scores do provide insight into assessing respondents' perception of t h e i r stress with a higher score i n d i c a t i n g higher l e v e l of stress (Cohen et a l . , 1983; Cohen & Williamson, 1988). The scores for the group as a whole ranged from 21 to 33 (highest possible score - 56). Three respondents' scores increased following the group program, three respondents' scores decreased following the group, and two respondents' scores remained the same. For those three respondents whose scores decreased, the scores decreased by two points. For the three respondents' whose scores increased, the scores increased by four, two and f i v e points respectively. Respondents' Scores from PSS Respondent Perceived Stress Score Point Change Before Group A f t e r Group 1 24 28 t 4 2 25 23 T 2 3 23 21 i 2 4' • • 24 22 ' i 2 5 33 33 0 6 21 V- . 21 0 7 24 26 T 2 8 22 27 Î 5 Figure 3 Bar Graph of Respondents' Perceived Stress Scores • BefcxeOoup • After Qoip Linking Qualitative and Quantitative Data For each respondent, the quantitative data (scores from PSS) 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 (demographic, 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 during the interviews) were matched and are presented i n Table 5. In Table 5, the q u a l i t a t i v e data provides possible explanations for the respondents' PSS scores, further corroborating the r e s u l t s of the PSS. Support Group Evaluation Form The evaluation form was completed by each respondent at the end of the f i n a l session of the group program. Completion of the evaluation form was not uniform i n that not a l l respondents addressed each question as f u l l y as others. Regardless, the feedback received was informative to the study as i t provided an opportunity to examine the f i t between responses on the evaluation form with responses during the interview. While no addi t i o n a l themes were revealed, the comments on the evaluation form did reinforce the themes which emerged from the interviews. Comments e l i c i t e d on the evaluation form were c o l l a t e d and are presented i n Table 6. Findings from the PSS and Interviews Respondent Perceived Stress Score Interview Data Before Group/After Group 1 24 28 Caregiver was p h y s i c a l l y unwell, had few family supports, perceived l i t t l e c ontrol over her s i t u a t i o n , and had attended a h o s p i t a l meeting regarding her care receiver i n which a poor prognosis was given. 2 25 23 Caregiver was well supported by family, with shared decision making. Care receiver's health was improving and was described as a reasonable and understanding person. Home support services were r e a d i l y accepted by the care r e c e i v e r . Caregiver now f e l t choices made were appropriate. 3 23 21 Care receiver was s t i l l progressing i n therapy. Caregiver had a very good r e l a t i o n s h i p with care receiver and a strong sense of family support. F e l t the group prepared her f o r the future. 4 24 22 Caregiver stated she f e l t she had explored every option available and that the group assis 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 care f o r her care receiver. Findings from the PSS and Interviews Respondent Perceived Stress Score Interview Data Before Group/After Group 5 33 33 Care receiver had made a good recovery. He spoke of confidence i n providing care and takes h i s caregiving • r e s p o n s i b i l i t i e s s e r i o u s l y . Very strong attachment to care receiver. 6 21 21 Had caxe receiver home for a period of time and had established routines that were working w e l l . Came to the group f o r a f f i r m a t i o n of what she was doing. 7 24 26 Family feud was esc a l a t i n g . Caregiver's husband had unexpected operation. Care receiver was ready f o r discharge and would be l i v i n g with caregiver temporarily. 8 22 27 Care receiver was no longer improving and soon to be discharged. Caregiver was providing 24 hour care with l i t t l e family or homemaking support. F i n a n c i a l concerns were mounting. Summary of support Group Evaluation Form 1. Please c i r c l e the number that best r e f l e c t s your opinion of t h i s program. •3 c i r c l e d 'Liked somewhat' •5 c i r c l e d 'Liked very much-I learned a l o t ! ' 2. I f you had a f r i e n d who was a caregiver, would you recommend the program? •Yes, to help a caregiver by l e t t i n g him/her know of a possible resource. •Yes, a better understanding of s t r e s s . •Yes, I think i t ' s very informative and h e l p f u l . •Yes, i t improves caregiving. •Yes, to le a r n how to cope. 3. Has t h i s program changed the way you f e e l about caregiving? •Yes, I r e a l i z e how lucky I am. •Yes, I have more understanding of the d i f f e r e n t issues. •Yes, more prepared, more informed. •Yes, now I know I am not the only one i n t h i s s i t u a t i o n but there are so many l i k e me. •Yes, understanding the disabled party. •No, there are no simple answers and decisions are s t i l l a b i g worry. 4. W i l l you do things d i f f e r e n t l y 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 group? •Yes, take more time f or myself and my family. •Yes, understanding, f i n d a d i s t r a c t i o n . •Yes, I ' l l t r y to get help and give myself a l i t t l e t r e a t sometimes. •Yes, be more accepting of the program. •Yes, ask f o r help. •Yes, be more communicative. 5. Do you use anything you learned now? •Yes, improved communication. •Yes, being more understanding. •Yes, patience. •Yes, I ' l l t r y to accept the f a c t that the s i t u a t i o n I am i n now i s somewhat out of my c o n t r o l . I ' l l just have to learn not to blame anybody. 6. W i l l you use anything you learned i n the future? •Yes, not to f e e l g u i l t y about myself. •Yes, take some time for myself, to be more balanced i n coping with the s i t u a t i o n . •Yes, ca r i n g f o r myself. (2 responses) •Yes, resources that we can get assistance. •Yes, not being a f r a i d to ask f o r help whatever the case may be. •Maybe, one has to be strong and tough emotionally to face the r e a l i t i e s of l i f e . 7. Which parts of the program would you l i k e to see more time spent on? •counselling f o r caregivers •healthy communication •keep as i s • d i f f e r e n t ways to reduce stress •the experiences of caregivers 8. I f we have to cut some things out of t h i s program, what should we cut? •Nothing cut, j u s t maybe shorten each topic a l i t t l e . General comments : •I think i t i s an excellent 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 [ the leader] or a member of the group gives h i s or her idea. •Thank you f o r providing a s i t t e r for my mother. Without t h i s help, I would not have been able to attend these sessions. •I appreciated the concern f o r caregivers and the e f f o r t to improve them. •This has been a very h e l p f u l , informative series of meetings and I f e e l I gained 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 otherwise. •I l i k e t h i s program because people i n the c l a s s were so w i l l i n g to share the d i f f i c u l t i e s they are having with the persons they are caring f o r . That made me f e e l that I am not alone i n t h i s . •sharing our thoughts gives me some piece of mind, sharing and caring are hand i n hand. •This program i s b e n e f i c i a l - helps to understand both sides of i l l n e s s . I now have a better outlook i n accepting day to day problems and able to cope. In the chapter to follow, the findings presented w i l l be discussed i n r e l a t i o n to 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). Chapter Six Discussion of Findings S Introduction The following discussion w i l l address the findings from the interviews, the PSS, the information yielded from the marriage between the two, and the evaluation form. The findings are presented i n r e l a t i o n to the t h e o r e t i c a l framework and related theories, relevant studies, and methodological issues. A Conceptualization of Caregiver Stress and the Effects of Support Group Involvement on Stress From the analysis of the interview data and the PSS scores, a conceptualization of caregiver stress and the e f f e c t s of support group involvement on stress emerged and i s presented i n Figure 4. The conceptualization i s useful i n i l l u s t r a t i n g the findings of the study and i n making linkages to the t h e o r e t i c a l framework. The conceptualization i s comprised of stages constructed from the major themes uncovered i n the interview data and i s influenced by the findings of the PSS and the evaluation form. The understanding begins with the i d e n t i f i c a t i o n of contributing factors to stress as perceived by the caregivers and the various e f f e c t s of caregiving on the caregiver. Support systems provide i n s i g h t on coping mechanisms and influences the contributing factors to stress and the e f f e c t s of caregiving on the caregiver. The experience of p a r t i c i p a t i n g i n a caregiver support group and Figure 4 A Conceptualization of Caregiver Stress and the Effects of Support Group Involvement Individual and Situational Variables Contributing Effects of Support Group Resultin Factors *' Caregiving Systems *" Experience Effects to Stress on the Caregiver Adapted From: Caregiver Stress - Coping Model Developed by Biegel, Sales & Schultz, 1991 the changes that r e s u l t also influence the factors contributing to stress and the e f f e c t s of caregiving on the caregiver. F i n a l l y , i n d i v i d u a l and s i t u a t i o n a l variables a f f e c t each of the preceding stages. S i m i l a r i t i e s e x i s t between the conceptualization presented i n Figure 4 and the t h e o r e t i c a l framework presented i n Figure 2 (Chapter 3). Contributing factors to stress are represented i n both, however, the findings from the study indicate additional factors (concern for the future, r e s p o n s i b i l i t y for decisions, and 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 contributing to s t r e s s . The various e f f e c t s (physical, s o c i a l and emotional) on' the caregiver are also i d e n t i f i e d i n the conceptualization and the t h e o r e t i c a l framework. The importance of support systems and the impact on the caregiving experience i s revealed i n the conceptualization and c e r t a i n l y relates to the influence of family dimensions i n the t h e o r e t i c a l framework. F i n a l l y , the i n d i v i d u a l and s i t u a t i o n a l variables as they a f f e c t each stage resemble the conditioning variables i n the framework, and includes the appraisal component i n the experience of stress. The conceptualization informs the t h e o r e t i c a l framework, drawing attention to the intervention of group work and i l l u s t r a t i n g how the group experience and the e f f e c t s on p a r t i c i p a t i o n relate back to the contributing factors to stress and the e f f e c t s of caregiving on the caregiver. The findings as i l l u s t r a t e d i n the figure further inform the l i t e r a t u r e on caregiving as i t demonstrates the i n t e r a c t i v e nature of the process of caregiving. Overall, the analysis reveals many s i m i l a r i t i e s that e x i s t between the conceptualization derived from the findings and the t h e o r e t i c a l framework which guided the study. It also provides ad d i t i o n a l information regarding group work as an intervention and i t s r o l e i n the caregiving experience. While the conceptualization i s useful i n integrating and i l l u s t r a t i n g the findings i n a general sense, a b r i e f discussion of s i g n i f i c a n t findings from each of the instruments i s warranted. Interviews The findings from the interviews indicate l i n k s between the respondents' caregiving experience, the Caregiver Stress-Coping Model (the model previously presented i n Chapter Three), and the caregiving l i t e r a t u r e . More s p e c i f i c a l l y , the themes which emerged to represent contributing factors to caregiver stress (care receivers' behavior and d i s a b i l i t y , provision of continuous care, concern for the future, decision making and competing r e s p o n s i b i l i t i e s , and the provision of physical, emotional and instrumental assistance) and e f f e c t s of caregiving on the caregiver (physical, s o c i a l and emotional effects) 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 related to variables i n the Caregiver Stress-Coping Model (Abel, 1990; Cantor, 1983; McCallion et a l . , 1994; Toseland et a l . , 1990). The themes which emerged to represent the group experience (informative, educational and supportive) are also found i n the l i t e r a t u r e (Biegel et a l . , 1991; Toseland et a l . , 1989). with respect to changes i n perceived stress, the interview data reveals that respondents indicated minimal or no change i n stress as a r e s u l t of attending the support group program. This f i n d i n g can be understood given respondents i n d i c a t i o n that they could not i s o l a t e the e f f e c t s of the group on t h e i r experience of stress as other influences existed concurrently ( i e . increased family support, physician involvement). The modest change i s also understandable as respondents described the many facets of the caregiving r o l e , facets which are not s t a t i c , are ever changing and e f f e c t the experience of stress ( i e . current physical status of the care receiver, caregiver's physical well-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, the importance of i n d i v i d u a l and s i t u a t i o n a l variables on caregiving and the experience of stress i s highlighted here. The finding further suggests that the ef f e c t s of attending a support group are, i n part, related to the timing of the support group for 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 of t h e i r experience were expressed more passionately, warranting acknowledgement as they provide further insight into the experience of caregiver stress. Consistent with the t h e o r e t i c a l framework, strong emphasis on the importance of family members for support was made by each respondent. While friends as support and r e l i g i o n as a source of strength were mentioned, rel i a n c e on other family members ( i e . spouses, adult children, s i b l i n g s ) for emotional and instrumental assistance was pervasive. Interestingly, of the eight respondents, only two caregivers u t i l i z e d formal supports such as homemaking help, r e i n f o r c i n g reliance on themselves and other family members to meet the care receivers' and t h e i r own needs. This i s consistent with the l i t e r a t u r e as studies c i t e high percentages of care to the e l d e r l y being provided by family members (Brubaker & Brubaker, 1992; Chappell, 1990). Although not developed into themes due to too infrequent reports, two remarks each made by d i f f e r e n t respondents are noteworthy and relevant to caregiver stress. F i r s t , the respondents presented a sense of coiranitment to the care receiver and t h e i r caregiving r o l e , placing the care receiver's needs f i r s t and then accommodating t h e i r own l i v e s . While such a commitment often resulted i n d r a s t i c l i f e s t y l e changes and affected them phys i c a l l y , s o c i a l l y and emotionally, a sense of duty and obli g a t i o n prevailed. Another i n t e r e s t i n g comment was made by respondents as they described t h e i r caregiving experience. Respondents referred to the existence of stages or cycles of caregiving, commenting on the process of caregiving — learning how to provide care and how to cope, f e e l i n g uneasy and unsure and then gaining experience and confidence, moving onto acceptance and creating new ways of l i v i n g , a n t i c i p a t i n g future changes and a l t e r i n g established routines as care needs change. Both comments — the sense of commitment i n providing care and the process of caregiving i t s e l f — suggest that some amount and type of stress appears to be inherent i n the caregiving experience. This finding, which i s supported i n the l i t e r a t u r e (Abel, 1990), must be recognised when examining the e f f e c t s of an intervention with family caregivers. Perceived Stress Scale The findings from the PSS — scores i n d i c a t i n g no s t a t i s t i c a l l y s i g n i f i c a n t change i n perceived stress among respondents as a group — are consistent with other studies that show that time-limited psychoeducational support interventions have modest therapeutic benefits with respect to stress (Beigel et a l . , 1990; Toseland & Rossiter, 1989; Z a r i t & Toseland, 1989). The lack of s i g n i f i c a n t change i n the respondents' stress l e v e l may be related to the s e l f - s e l e c t e d sample i n that some participants i n the group may have been less distressed and therefore less l i k e l y to experience changes i n terms of stress as a r e s u l t of the intervention program. Despite problems associated with caregiving, not a l l caregivers s u f f e r high l e v e l s of stress (McCallion et a l . , 1994) and some seek assistance to learn about alternatives i n the event t h e i r s i t u a t i o n should become worse (Zarit & Toseland, 1989). As well, the c h r o n i c i t y of stressors needs to be considered i n conjunction with expectations of changes that can reasonably occur with a b r i e f intervention. There i s a growing f e e l i n g that a time-limited group of less than 12 weeks i s too b r i e f a period to demonstrate s i g n i f i c a n t e f f e c t s (Brown, Cook & Magwood, 1993; Whitlatch et a l . , 1991). F i n a l l y , the reported minimal change i n perceived stress by the respondents during the interview may be related to a tendency for family caregivers to underreport the experience of stress on measures (Zarit & Toseland, 1989). As presented, the findings from the PSS indicate the scores ranged from 21-33 with the three highest scores (average between pre- and post-group scores) belonging to Respondents 1, 5 and 8, each of which were spouses. This finding i s consistent with the l i t e r a t u r e which states higher l e v e l s of stress are reported by spouses than other family caregivers ( M i l l e r , 1989). Lazarus & Folkman (1984) c i t e evidence that the greater the strength of s a t i s f a c t i o n , the more vulnerable an i n d i v i d u a l i s to psychological stress i n the area of that commitment. This f i n d i n g might suggest a p o s i t i v e connection between caregiver/care receiver r e l a t i o n s h i p or involvement and stress, a suggestion also echoed i n the t h e o r e t i c a l framework. Linking the Findings from the Interview Data and PSS Combining the findings from the interviews with the findings from the PSS allows for further interpretation of the r e s u l t s . While respondents' during the interview stated minimal or no change i n t h e i r stress 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, findings from the PSS indicate that some in d i v i d u a l scores did i n f a c t increase and decrease s l i g h t l y . As an explanation to account f o r the discrepancies between the interviews and PSS for those i n d i v i d u a l s , one might consider the fa c t that the point change for each i n d i v i d u a l respondent was small and l i k e l y not s i g n i f i c a n t enough for respondents to perceive a f e l t change i n t h e i r stress 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 group. Another explanation may be that with the time lapse between completion of the PSS and the interview, r e c o l l e c t i o n of the eff e c t s of the group may be less accurate. S i m i l a r l y , during the time lapse, the respondents continued i n t h e i r caregiving r o l e , subjected to occurrences which may have influenced t h e i r perception of stress and the e f f e c t of the group experience. Overall, the res u l t s noted from the PSS indicate some respondents reported s l i g h t increases, decreases or remained the same. 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 contributed to the r e s u l t s , these findings can probably best be understood i n conjunction with the interview data and from the perspectives of the stress process and the ro l e of 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 . Each forces attention on the relationships among the many conditions leading to caregiver stress, the way these relationships change over time, and an ind i v i d u a l ' s cognitive appraisal of the s i t u a t i o n . Evaluation Form The findings from the evaluation form reveal comments that are s i m i l a r to the themes i d e n t i f i e d i n the interview data with respect to the group experience ( i e . supportive, informative, changes that have resulted). Despite the questions on the form not d i r e c t l y adhering to the interview guide and being unable to l i n k each respondents' interview data with his/her evaluation form, t h i s f inding increases the v a l i d i t y of the study. Of in t e r e s t , while r e s u l t s indicate p a r t i c i p a t i o n i n the support group d i d not change respondents' perceived l e v e l of stress v e r b a l l y or as recorded on the PSS, the respondents did report a strong sense of s a t i s f a c t i o n with the group both on the evaluation form and i n the interviews. Several points bear influence on t h i s f i nding. The respondents may be s a t i s f i e d with the group for reasons that have nothing to do with f e l t changes i n stress (Biegel et a l . , 1991). For instance, they may have f e l t g r a t e f u l someone paid attention to 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 also have f e l t p o s i t i v e about the group experience because they value the organization sponsoring the group and/or s t a f f working with the group. Summary The data and analysis of the interviews, PSS and evaluation form yielded the themes and stages which contributed to the development of a conceptualization of caregiver stress and the e f f e c t s of support group involvement on the experience of stress. Presentation and discussion of the conceptualization (Figure 4) i l l u s t r a t e s the usefulness of the study's findings i n understanding group work as an intervention and i t s r o l e i n the caregiving experience. Consistent with the l i t e r a t u r e , the r e s u l t s suggest that caregiver stress must not be thought of as an event but instead as a mix of circumstances and one that varies considerably among caregivers (Pearlin et a l . , 1990). Further, supplying caregivers with supportive relationships 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 caregiver stress. Regardless of r e s u l t s which prove an increase or decrease i n caregiver stress following group intervention, we must be mindful of the needs of caregivers and recognize the many pote n t i a l benefits of group intervention other than stress reduction (Abel, 1990; Toseland et a l . , 1990). Chapter Seven Conclusions, Implications and Recommendations Introduction The purpose of t h i s study was to examine the e f f e c t s of a short-term support group on stress of family caregivers of ho s p i t a l i z e d e l d e r l y , and to provide descriptive information on the caregiving experience. Conclusions, implications f o r s o c i a l work practice and recommendations for further research are presented i n t h i s chapter. Conclusions This study has contributed to the e x i s t i n g knowledge base within the f i e l d of caregiving, addressing the paucity i n the l i t e r a t u r e with respect to the e f f e c t s of group interventions on stress with family caregivers i n the hospital s e t t i n g . The Caregiver Stress-Coping Model (Biegel et a l . , 1991) presented i n Chapter Three, i n combination with family systems thinking, stress theory and group work theory, provided a framework to organize the findings, to understand the i n d i v i d u a l i z e d multifactored caregiving experience, and to f a c i l i t a t e the conceptualization of the e f f e c t s of support group interventions on stress i n the caregiving experience. The conceptualization contributes to the Caregiver Stress-Coping Model as i t introduces support group work as an intervention and i l l u s t r a t e s the ways i n which the intervention can p o t e n t i a l l y e f f e c t the caregiver and t h e i r experience of s t r e s s . 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 relates back to previous stages. The model i d e n t i f i e s i n d i v i d u a l differences as a variable which influences the e n t i r e caregiving experience. A word most accurately describing family caregivers i s heterogeneity. Although c e r t a i n trends characterize them as a group ( i e . mostly spouses and adult children) and c e r t a i n themes describe the caregiving experience ( i e . demanding, time consuming, rewarding), differences 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 occurring over time with stress being a normative component i n the experience and process. As demonstrated, caregiving i s influenced by key c h a r a c t e r i s t i c s of the caregiver, care receiver and the s i t u a t i o n and the e f f e c t s are threaded throughout the stress process. This study has also contributed to the ex i s t i n g models of research 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 roles as well as q u a l i t a t i v e and quantitative methods of data c o l l e c t i o n . The value of the study design including both q u a l i t a t i v e and quantitative components i s observed as the findings of each complement and corroborate the other. I t i s believed that t h i s added v a l i d i t y to the study. The design provided d i f f e r e n t perspectives of the same r e a l i t y , affording i d e n t i f i c a t i o n and reinforcement 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 differences i n the caregiving experience. while the r i s k of bias was present, the advantages of blending the roles of researcher and p r a c t i t i o n e r are s i g n i f i c a n t . Recruitment procedures were less onerous as the researcher had d i r e c t access to p o t e n t i a l respondents. Being f a m i l i a r with 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 interview process as the researcher could better design the interview guide, focus the interviews and perhaps grasp meaning more f u l l y upon analysis. The s o c i a l work background of the researcher was also b e n e f i c i a l as a balance was struck between the p r i n c i p l e s of rigorous i n v e s t i g a t i o n and a nurturing concern for respondent welfare. As the aging process continues and as disease progresses, care needs of the care receiver are l i k e l y to increase. L o g i c a l l y , the health of an aging r e l a t i v e i s beyond the influence of group intervention and therefore i t i s not unreasonable to discover that caregiver stress does not always decrease because of such interventions (Toseland, Rossiter & Labrecque, 1989). However, based on the presented l i t e r a t u r e review and the findings of t h i s study, many worthwhile benefits are derived from support group interventions for family caregivers. Feeling supported and not i s o l a t e d , gaining information and education on providing care, and learning how to cope are tools that a s s i s t caregivers i n f u l f i l l i n g t h e i r demanding and valuable r o l e . Enabling family caregivers i n t h e i r e f f o r t s also serves the health care system, contributing to a decrease i n caregiver i l l n e s s and i n hospital and i n s t i t u t i o n a l care of care receivers. In l i g h t of government f i n a n c i a l r e s t r a i n t s and fewer professional to d e l i v e r service, support groups are a useful intervention modality i n meeting the needs of the many caregivers who require attention. Implications for Social Work Practice The findings of the study give c r e d i b i l i t y to planning intervention strategies that o f f e r tangible assistance and emotional support to caregivers. From both a c l i n i c a l practice and public p o l i c y perspective, s o c i a l work has a r o l e i n developing e f f e c t i v e interventions to meet the needs of caregivers. The findings from t h i s study suggest the following implications for s o c i a l work pr a c t i c e . C l i n i c a l Practice • The model, with i t s emphasis on i n d i v i d u a l differences, forces s o c i a l workers to look more c l o s e l y at the members coming into the group, be aware of what t h e i r needs are, and attend to those needs by t r y i n g to i d e n t i f y common ground among the group members. The model further influences practice as i t i l l u s t r a t e s p o t e n t i a l areas to be effected by the group process, d i r e c t i n g program content. • As caregivers have d i f f e r e n t needs and issues, caregiver support groups may be more e f f e c t i v e by targeting s p e c i f i c subgroups within the caregiver population ( i e . spouses, adult c h i l d r e n , men or women) and designing content accordingly. • For the purpose of the research study, a pre-group meeting was held p r i o r to the s t a r t of the caregiver support group program. The meeting allowed the group leader the opportunity to begin to assessing p a r t i c i p a n t s ' needs as well as provided parti c i p a n t s with the opportunity to meet one another (decrease anxieties) and to be involved i n the planning of the content. As the meeting was successful at fostering a sense of comfort and support p r i o r to the group program, such pre-group meetings should be b u i l t into the program. • Informal contact with respondents occurred following the study and while obviously not s c i e n t i f i c a l l y measured, an in d i c a t i o n of t h e i r ongoing needs was present. Given the process of caregiving i t s e l f , a maintenance strategy ( i e . monthly meetings, a caregiver buddy system, f a c i l i t a t i o n of peer-led/self-help meetings) should be considered following the cessation of the group program. • Support groups are simply one l i n k i n the chain of a c t i v i t i e s to a s s i s t caregivers. Depending on the types of problems facing a caregiver, i n d i v i d u a l intervention may be more appropriate or required as well. Group work does not replace i n d i v i d u a l counselling as i t cannot address the varied concerns and problems caregivers face. • Recruitment of participants/respondents for the group/study raised a l o g i s t i c a l problem, one that i s l i k e l y often overlooked yet c r i t i c a l to caregivers. Caregivers who are providing care 24 hours/day have d i f f i c u l t y attending support groups. The issue of care for the care receiver to enable caregivers to attend support groups needs to be addressed ( i e . day care programs, homemakers, volunteers) and e f f o r t s are required to i d e n t i f y the best possible time and l o c a t i o n for caregivers to attend support group programs. Public P o l i c y Unfortunately Canadian s o c i a l p o l i c y appears to rest 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 for s o c i a l problems and i s very vulnerable to s h i f t s i n the economic climate. With respect to the care of the e l d e r l y , the family i s considered the l o g i c a l source f o r a solution. In order f o r family support to be p r a c t i c a l , there i s a need fo r formal support services for older adults and for family members who care for them beyond caregiver support groups. Support groups need to be thought of as a supplemental measure, not as an end i n and of themselves. Findings from the study indicate formal supports were not used by caregivers to any s i g n i f i c a n t extent. From t h i s study, one can only speculate t h i s might be r e l a t e d to 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 services a v a i l a b l e . Regardless of the reasons, fewer supports available or used by family caregivers means a greater reliance on themselves. Advocacy i s required to increase various forms of support to caregivers such as material (equipment) and f i n a n c i a l aid, homemaking and respite services i n the home, and temporary placement. E f f o r t s are also needed to r a i s e the v i s i b i l i t y of caregivers and the value of t h e i r contributions. Recommendations for Further Research This study has only begun to examine caregiver support group programs i n the hospital s e t t i n g and further research i s recommended. One area requiring attention i s on s p e c i f i c sub-groups of caregivers i n order to i d e n t i f y s i m i l a r i t i e s and/or differences and pot e n t i a l value i n o f f e r i n g sub-group s p e c i f i c support groups. Future research endeavors should also investigate important outcomes other than stress reduction such as improving coping s k i l l s , preventing depression, and increases i n caregiver support systems. S i m i l a r l y , research investigating the e f f e c t s or effectiveness of group interventions should incorporate measures that take into account the goals that caregivers have for themselves. F i n a l l y , an area which appears to have received l i t t l e attention yet i s central to the caregiving experience i s with the care receivers themselves. Perhaps a better understanding of t h e i r role i n the caregiving r e l a t i o n s h i p would help guide future interventions with caregivers. Advances i n medicine and modern technology have been successful i n adding years to l i f e . However, one might say that the family have a central r o l e i n adding l i f e to those years. The essence of family caregiving problems and a pot e n t i a l solution i s captured i n the following statement: Often one must tend the ground around the tree to keep i t t h r i v i n g . We may f i n d ourselves best caring for the aged by caring for those who are important to the aged. 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E f f i c a c y of interventions with caregivers: A reanalysis. The Gerontologist. 31(1), 9-14. Whyte, W. (1982). Interviewing i n f i e l d research. In R.G. Burgess (Ed.), F i e l d Research: A source book and f i e l d manual (pp.111-122). Boston: G.Allen & Unwin. Z a r i t , S., Anthony, C , & Boutselis, M. (1987). Interventions with caregivers of dementia patients: A comparison of two approaches. Psychology and Aging. 2, 225-234. Z a r i t , S.H., Toseland, R.W. (1989). Current and future, directions i n family caregiving research. The Gerontologist. 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 N U V E E ? Stolar, G.E. Social Work B93-0786 INSnTUTlCN(S) W H E R E RESEARCH WILL BE CARRIED OUT UBC. Campus CO-INVESTIGATORS: Book, E.; Social Work SPONSORING AGENCIES APPROVAL DATE TERMCTEARS) AMENDFa JAN 11i 1994 3 TTTLEl A course for caregivers: Group work as an intervention vôth family caregi iitalized 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. D r T K C ^ H e ^ ^ ^ y D/. R. D.Spratle/ Dr. I. Franks, Associate Chairs ( / ^ 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: Holy Family Hospital acknowledges the current enrolment of Elaine Book i n the Master of Social Work degree program at the University of B r i t i s h Columbia. El a i n e Book's research proposal on the caregiver support group program has been reviewed and i s supported as presented by Ms. Book. Pending approval by the 'University of B r i t i s h Columbia Eth i c s Committee, Holy Family Hospital v i l l permit the research to be c a r r i e d out at t h i s f a c i l i t y . The Research Committee w i l l r equire Ms. Book to obtain informed consent from each p a r t i c i p a n t . We are pleased to a s s i s t Ms. Book i n her research endeavour. Dr. I.V Tsang Chair, Research Committes Holy Family Hospital President Holy Family Hospital Specializing in Geriatric Rehabilitation January 4, 1994 Dear: Having a relative or friand in hospital can often be a confusing and stressful time. For this reason, the Social Work Department at Holy Family Hospital is 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: TIME: WHERE: WHO IS INVITED: Tuesdays, Jantiary 25, February 1, 8 and 15 4:30 to 6:00 p.m. Holy Family Hospital, Education Roan Level I 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 it my time? Caring for yourself February 15 Healthy Corrnunication As space is 1 Lilted, please register by contacting Elaine Book at 321-2651. Also, attached is 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 Dianne Watt, MSW 321-2661, local 348 7Rni Ar<T,.U Ç>r=o> \r I3^ 1_--U V5T>-=Ti T--, T H E U N I V E R S I T Y OF B R I T I S H C O L U M B I A 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 Elaine Book. I am a graduate student at the Univers i t y of B r i t i s h CoiuiTibia, School of Social Work. I would l i k e to inv i t e you to participate in a research study seeking to examine the effects of participation i n the "Course for Caregivers" program at Holy Family Hospital. I am int e r e s t e d i n learning how participation i n this group program has impacted your l i f e as a caregiver. The purpose of thi s study i s to better understand your experience which w i l l help improve our knowledge and services in this area. The research w i l l be conducted by completing two questionnaires and an interview which w i l l take approximately two hour of your time. Interviews will be audiotaped to ensure accuracy and w i l l be erased upon completion of this project. ' A l l i d e n t i f y i n g information will be held i n confidence by the researcher and i d e n t i f i a b l e individual responses w i l l not appear i n the f i n a l report. Your p a r t i c i p a t i o n i n this project i s completely voluntary. You may choose to withdraw at any time, and/or may choose not to answer any question. Your decision to participate w i l l in no way af f e c t services you may be receiving now or in the future from Holy Family H o s p i t a l . Within three to four days of receiving this l e t t e r I w i l l contact you by phone. Should you be interested in participating i n the study, a b r i e f meeting wil l be held on January 18 , 1954 p r i o r to the group beginning on January 25, 1994. Should you have any questions or wish to contact me, please fe e l free to c a l l me at 321-2551 or ir.v thesis advisor Elaine Stolar at 822-2277. Thank you for your time. Sin c e r e l y , Elaine Book ±0"7 The questionnaire w i l l ask you about your feelings and thoughts during the l a s t month. In each case, you w i l l be asked to indicate how often you feLt or thought a certain way. Although some of the questions are similar, there are differences between them and you should treat each one as a separate question. The best approach i s to answer each question f a i r l y quickly. That i s , don't try to count up the number of times you f e l t a particular way, but rather indicate the alternative that seems l i k e a reasonable estimate. For each question, 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 often 1. In the l a s t month, how often have you been upset because of something that happened unexpectedly? 0 1 2 3 4 2. In the la s t month, how often have you f e l t that you were unable to control the important things i n your l i f e ? 0 1 2 3 4 3. In the l a s t month, how often have you f e l t nervous and "stressed"? 0 1 2 3 4 4. In the l a s t month, how often have you dealt successfully 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 often 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 occurring i n your l i f e ? 0 1 2 3 4 6. In the l a s t month, how often have you f e l t confident about your a b i l i t y to handle your personal problems? 0 1 2 3 4 7. In the la s t month, how often have you f e l t things were going your way? 0 1 2 3 4 8. In the l a s t month, how often have you found that you could not cope with a l l the things that you had to do? 0 1 2 3 4 0 never 1 almost never 2 sometimes 3 f a i r l y often 4 very often 9. In the l a s t month, how often have you been able to control 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 often 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 often have you been angered because of things that happened that were outside of you control? 0 1 2 3 4 12. In the l a s t month, how often have you found yourself thinking about things that you have to accomplish? 0 1 2 3 4 13. In the l a s t month, how often have you been able to control the way you spend your time? 0 1 2 3 4 14. In the l a s t month, how often 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 record your b i r t h date as an i d e n t i f i c a t i o n code. day mo. yr. Thank you for your cooperation and time. APPENDIX G INTERVIEW GUIDE Can you tell me what the word 'caregiver' means to you? Can you tell me about why you were interested in coming to the caregiver group? Probes: Difficulties you may be experiencing What are seme the difficult 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 tell me what i t was like being in the group? Informative, supportive, emotional, unsettling? In what ways has being in the group changed things for you? Probes: The difficult parts of your caregiving job? How you deal with these difficulties? How being a caregiver affects you since being in the group? How are you coping? PROFILES YOUR RELATIVE'S PROFILE Your r e l a t i v e i s currently: an in-patient at Holy Family Hospital an out-patient at Holy Family Hospital a resident on the Extended Care Unit l i v i n g i n the community Your r e l a t i v e has had: a stroke orthopedic surgery an amputation other (please specify) 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 marital status i s : single married widowed divorced separated YOUR PROFILE Your relationship to the patient: spouse adult c h i l d brother friend other(please specify). Your age i s . Your gender i s male or female . Your marital status: single ^married widowed divorced separated The length of time you have been involved as a caregiver i s : ^months years The number of hours per day that you spend helping, i n any way, your r e l a t i v e i s . Your employment status: f u l l - t i m e part-time not employed r e t i r e d Please record your b i r t h date as an i d e n t i f i c a t i o n code day mo. yr. Thank you for your time and cooperation. I ( i APPENDIX I "A COURSE FOR CAREGIVERS" EVALUATION 1. Please circle the nvmiber that best reflects your opinion of this program: 1 2 3 4 5 Disliked Disliked Neutral Liked Liked very much - somewhat not sxire somewhat very much -"A waste "I learned of time" a lot!" 2. If you had a friend who was a caregiver, would you recoimend that he or she participate in this program? Yes No Why or why not? 3. Has this program changed the way you feel about caregiving? Yes No Why or why not? 4. Will you do things differently as a result of participating in this program? No Yes If so, what? 5. Do you use anything you learned now? No Yes If so, what? 6. Will you use anything you learned in the future? No Yes • If so, what? 7. Which parts of the program would you like to see more time spent on? 8. I f we have t o cut sens t h i n g s cut of t h i s program, what should we cut? General Ccnments: We welccme any thoughts you would like to share about this program. T H E U N I V E R S I T Y OF B R I T I S H C O L U M B I A 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 the Research Project T i t l e d : A Course for Caregivers: Group Work as an Intervention with Family Caregivers of Hospitalized E l d e r l y Researcher:. Elaine Book, B.S.W., H.S.W. (Candidate) I . understand that the purpose of this .study i s to evaluate the group program in which I am a participant. Ï. understand that p a r t i c i p a t i o n i n this study involves the completion of two questionnaires (one at the beginning of the program and one at the end, each'requiring five minutes of my time) as well as an in-person interview (approximately one hour) conducted by Elaine Book. I understand that my participation is completely voluntary and that I may choose to withdraw at any time from the study. Further, I consent to the interview being audiotaped and understand that the audiotape w i l l be erased upon completion of this research project. A l l the information that I choose to provide wil l be held i n confidence by the researcher. A l l identifying information w i l l be omitted i n the f i n a l report. Any services received from Holy Family Hospital w i l l i n no way be affected by my decision to p a r t i c i p a t e . Should I have any questions about the sûucy, I am able to contact Elaine Bock or Elaine Stolar, Faculty Advisor. My signature i s acknowledgemen- cf receipt of a copy cf this form and my ccnsent to participate m the study. P a r t i c i p a n t Signature:. Date: Interviewer Signature: Date: Elaine Book ::.iaine Stolar 321-2661 522-2277 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 (B APPENDIX K I t h i n k mayoe a çood p l a c e to b e g i n i s w i t n what the word c a r e g i v e r means to you t h i n k 3 4 t^ -oM COM t h a t t h a t word i s bei n g used a l o t and that, was the name of the group and I am wonciering what t h a t word means t o you. K: W e i l i t means bei n g the main su poor t and the 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 . ' • quass T. i i ^over I : 0 S'O t h e main s u p p o r t . . . ft : The main s u p p o r t and -ne main , tne a c t u a l c a r e g i v e r i n the s m a l l the s m a l l even minute t o minute or hour t o hour needs of the person who needs c a r e . I : So would t h a t when you say s u p p o r t do ^ I : uh huh you mean s u p p o r t i n what senses? R: Uhm...oh perhaps t o keep t h e i r morale up R: and uh make sure 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 p a i d , t h i n g s l i k e t h a t t h a t may 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 worry the person who i s the 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 managing o.k. J: I t sounds l i k e you are t a l k i n g about q u i t e a b i t of e m o t i o n a l s u p p o r t . R: I t h i n k s o r t of I t h i n k e s p e c i a l l y i n h i s case you know i f he, he i s p r e t t y w e l l always teaT'y. I t h m K he does uhm p r o b a b l y does because he i s not s o l e t o wai K e i t h e r . un h: t r . l n ^ ne ooes neec oer naos msyoe more n]ora L suppor t tnan par hap= someone who i s a b l e to get UP a no oo v>jnetner tne wâsnroom or you know e a s i l y . Course we aon't Know what m - o s i ^ + ; ^ ^ ^ 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 rrom some o^  a r e s. i r e a g y g i v i n g car e i t n e c a r e g i v e r s w n o o t. h e r w o r Q S I- IT) your eyes you see y o u r s e i ' 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 ; as 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 because t h e i r husband or p a r e n t i s a l r e a d y home. I nave to 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: We i l the 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 because r h e i r husband or 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 I mean I t h i n k I knouj what i t w i l l be 1 i ke Because  rrie . r i g h t _^  t rnay be ut I don' • Know 1 O i s u r e . q u i t e d i f f e r e m : uhm . He at the moment wasn't g e t t i n g c a r e you s e e , so he s o r t of i g n o r e me or do whatever he i t not g o i n g ed but mayoe once to e f f e c t ne i s home, f e e i s l i k e an whether he gets he msy cnange a b i t . So i t i s sometimes hard to 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 read a book a t the same time ( L a u g h ) . So t h a t ' s a l i t t l e hard but perhaps when he i s home ne won't do t h a t . I : And when you say t h a t h i s b e h a v i o r may change when you are home because you are g o i n g to be the one who i s he i s goi n g t o depend upon t o do some of the t h i n g s l i k e the c o o k i n g and the c l e a n i n g t h o s e k i n d of t h i n g s t h a t he now has t a k e n c a r e of f o r him. R: Uh Hun. Î hope s o . I : You hope t h a t i t i s g o i n g t o change. 28 29 30 31 32 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 R; Yes I mean yes I hope i t w i l l . I: I t sounds l i k e t h a t may be one of t h e d i f f i c u l t i e s t h a t you may be e x p e r i e n c i n g r i g h t now i s around the communication. yen 'cause he doesn't want to d i s c u s s mucn . . . on he w i l l say nave you p a i d the b i l l out •vi,t even t h a t so mijch anymore and he would asK c e r t a i n q u e s t i o n s and he doesn't anymore , d o iat rnu' now . In o t h e r -'erythmg. w e i i I was domq i t uean he would asK i f I naa pa l a b i l l or pnone b i l l or whatever t. do t h a t anymore so i n o t h e r v\' O r •  J 1 O C' <: t h e e1ec t r i c o u t ne G o e s r me. wnicn 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 not as i f I have t o rememoer t o go 3 n C; p S y 11 w 11- r"i o u. t t h e o 111 , . . t ne D 111 c o m e s T^.^cA /ÛWJ^ i n and s o you go pay i t . But he i s not s how l u g i n t e r e s t anymore r i g n t now. those some ot n i s ta s K s o e t o r e v R : He u s u a l l y maoe s u r e were h 5 p a i d . 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 2  -u>'Y^ -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 ; t o you. one t h a t ne i s handing over R; We l l I had been d o i n g i t f o r most. . I had p r e t t y w e l l always done i t r e a l l y . He hadn't p a i d too much a t t e n t i o n to i t but then he d i d . But then I t h i n k a t one p o i n t I heard about when women are o f t e n l e f t and they don't know wnat to do and I thougnt , gee. I f he were l e f t he would be i n t h e same boat. So I t h i n k i t i s time he took on t h e s e r e s p o n s i b i l i t i e s so I j u s t s u g g ested t h a t he do. And he took i t o v e r . I t i s not much but a t the same time 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 about the group t h a t you were i n t e r e s t e d i n coming t o ? R: We i l I guess t o hear ...uhm s o r t of f o r t h su p p o r t group, f o r the uhm perhaps t o hear wnat ot h e r p e o p l e were going through gone t h r o u g h . I t h i n k t h a t . , you_ are not al o n e oecause I have t h a t v e r y much or maybe .to know d i d f e e l o t h e r h o s p i t a l , I know anybody who L i k e when he was i n t h e was kinda a l o n e . I d i d n ' t was going through the same t h i n g so you a r e r e a l l y comipletely on your own. So i t was n i c e t o have a group where you were a l l h a v i n g the same problems. I- Going through the same t h i n g s , e x p e r i e n c i n g maybe some of the same d i f f i c u l t i e s . R; Yes a no to near some of ti i e t hi ngs I " nadn't thouant o f , of course oecause you c a n ' t , Know e v e r y t h i n g and i t was n i c e near t h a t , l i k e tne one man wnose w i f e was improving, so > much and so t h a t was n i c e to hear. I:That was e n c o u r a g i n g R:Ï es , i t was , t h a t s tne way i t oecause sometimes you t h i n k w i l l always be and here t h a t man s a i o n i s w i f e was improving g r e a t l y and im p r o v i n g a i l tne t i m e . i-ves you n e a r t I ; G: you . /es you he a r t and tne morale s u p p o r t f o r Cf.-' "2 3 4 6 7 8 9 10 12 u m ^ N ^ 14 15 16 17 18 19 20 21 22 23 24 L5 28 29 30 40 41 4 ..' R; I t n i n k s o . I t g i v e s vou s o r t of hope, you k n o t h a t p e T- haps as time Qoes on . re'.t 1 g e x. s t r o n a e r and i f ne aces n i s e x e r c i s e s ana a l l t h e t h i n g s he i s supposée t o GO, t h a t he may, 'may b e not be a b l e t o walk a l o t , may be h e ' . i l be a f e i s — ^ c . walk. cause one t h i n g I was concerned about was g o i n g t o the bathroom and t h a t was the main one i guess, j u s t b e i n g a b l e t o go t o the bathroom uhm . I thought i f he c o u l d walk t o the bathroom t h a t would make i t Decause I c o u l d n ' t w i t n mv s h o u l d e r and hack. I c a n ' t take any of h i s weight and so t n a t was my main c o n c e r n . I : And so h e a r i n g some of the oth e r c a r e g i v e r s t a l k about t h e i r e x p e r i e n c e s t o you was r e a s s u r i ng . R: W e l l i t was . I t was because l i k e my son what he, you know he had o n l y mentioned i t two or t h r e e t i m e s but t h e s e t h i n g s s t i c k i n your 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 from s t r o k e . He had, he was e i g h t y , he had a s m a l l s t r o k e wnich he c o m p l e t e l y r e c o v e r e d f r o m but then when he was e i g h t y f o u r ne haa a massive and my son Knew that, so of course i t was one t h i n g he was concerned about "On Motn " or the way he put was " we might nave to go through t h i s a g a i n " . So t h i s i s always s o r t of i n your mina uhm and my nusoana's was q u i t e oad but then i f he d i d have a n o t n e r o n e so t h a t was K i n o a m my mind t o o . ?iithough ne i s a mucn younger man than my f a t h e r uhm but you know I t h i n k my son i s ve r y concernea ano h a v i n g to go t h r o u g n something 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 so i t was n i c e t o near someone e l s e ' s r e l a t i v e had improvec. Now I'm not s u r e wnat age n i s w i f e i s out uhm she would be a t l e a s t sHxty 1 w c i l d imaaine mayoe a l i t t l e o i a e r and so i t was n i c e t o near t h a t someboay vvaf__^ incM-o\.n.,ric; . l ^ x O ^ ^ 45 46 47 48 49 50 I: So i t sounds l i k e r c ^ you 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 other people 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 s u p p o r t ana mayoe get t i n e som^ l o e a s of now to cope ana now to t a c k l e the s i t u a t i o n s . K; Yen 1 t n i n k so . 4 5 6 7 6 9 10 11 12 13 14 15 16 17 IS 19 20 21 p>W^ x(ûiI>i' 22 23 24 25 2t-p3 29 30 31 32 33 34 35 36 37 38 39 40 41 42 4 o 4fc 47 48 49 q2. i\iu\vji^x^ I : You t a l k e d a l i t t l e o i t about, we s t a r t e d "aïking a o i t about some or tbe 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 as a c a r e g i v e r nc^ w oecause as you say you don't nave nim at nome . But i t c e r t a i n l y sounds as though t h e r e a re c e r t a i n l y some c n a l l e n g e s t h a t you are coming up i n your r o l e as i t i s r i g h t now around how he i s d e a l i n g w i t h h i s i l l n e s s . K ; T sm not s u r e uh l i k have oeen f o r some t i r 3Partme£:t or somethincs he o O we have t o f i n d , and . we s h o u l d f i n d an t h a t was a l l on one l e v e l cause had a r t h r i t i s and I c o u l d see he was g e t t i n g worse, but ne nas h i s workshop i n the basement ana uh , he b u i l d s model s h i p s , and uh l a s t year we d i d n ' t get a n y t h i n g i n the garden a t a l l . That was the f i r s t year and so 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 apartment might be t h e b e s t , cause I c o u l d see hirn q e _ t t i n a worse so I thought 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 or use 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 of the time a t l e a s t he would 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 the st£4*ke. then he c o u l d s t i l l have a c c e s s to say the m a i l s , c o u l d s t i l l go t h e r e on h i s own and he wouldn't have to 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 DooKstores and I am not r e a l l y , I go i n t o a b o o k s t o r e i t i s f o r something s p e c i f i c , but he l i K e s t o spend time i n t h e r e and d i f f e r e n t p l a c e s . 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 but t h e r e was always so 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 oecause i don't want people aoove me, below me. oenmo me. You know you c a n ' t c o n t r o l o t h e r peooie and t h e y c o u l d a oe caught s t a r t f i r e a n a ^st^ç_le c o  ~Thë>'' a f t e r •:;on • t ia:';e c a t s . ' I t wot ^  ~ o b s t a c l e and I s a i d we nave t o r i n c something t h a t , you can't oo UP anc oown s t a i r s and you s h o u l d n ' t De do i n g i t now. We i l maybe we. c o u w i t i'l a n e X tr a t hoti g h t s o f YOU Know i t y o u ' r e agree because I naa g r e a t c o n t e n t apartment wnere we d i o n ' t have the UP Keep, wnat needs d o i n g . m an apartment i t i s o n i y wnat I S i n s i a e t n a t we ••O'-'lo nave to conteno W i t h . I wouldn't have t t wcrrv about garaens , a l t h o u g h iP s u ' a miss tne garoen. Sut anyway .( Laugh.)7get a winciow oox . ou you Know i'le i s v e r y s t r o n g , very 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 dlaA'^ ûr^ A^ 23 24 26 26 29 30 31 32 33 34 35 36 3 7 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 ] , they woula go and iooK a t an apartment and when we would t a l k to him about i t . i t was a new D u i l d i n g not r a r from where we are . I'a l i k e t o s t a y i n our g e n e r a l area i f p o s s i b l e and uh so we, a f r i e n d of mine and I . went t o see t h i s a partment. 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 the ground f l o o r and the o t h e r was f a c i n g a w a l l . I f you had been on t h e second C'T t h i r d , you would look over the t r a f f i c and t h a t wotiid have oeen r i ne. Eut we d i d n ' t go f u r t h e r w i t h i t oecause i t was p a r t of 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 hA^^^iA^_Jjj 1 n had—x-ox—iaiiC—LD—move _would__be v e r y good. So I d i d n ' t . So i t i s something, y e s t e r d a y we t a l k e d about i t by the way and uh he d i d say he d i d n ' t want t o but I might have t o go ahead and j u s t do something and I know he won't be happy. But t h a t might cause a problem . i s something you f o r s e e as a I : So t h a t problem . R: Oh yeh . I : And i t sounds l i k e i t i s even a b i t of a d i f f i c u l t y f o r you r i g h t now because you 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 to be made and he i s r e s i s t i n g t h a t . R: Yen. B e f o r e ne haa so many reas 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 thought 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 even i f you are borea , you can look out and t h e r e i s something to see.- But I can see t n a t i s g o i n g t o oe a b i t or' a proDlem , I am tne 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 are iooKing pay an-, m i l l i o n hundred wr'.at we he would O l T T l C U i t y made . o n t ne T . v. o n t i n t e r e s t u n t i l he : c o l l a r s w n e r e I ar a n d f i f ty t h o u s a n a . can a f r o r o sno ne i s r e a l 1 y 11Ke. a_r.Lsing wnen a homes he ooesn"t one at two l o o k i n g a t a I am lookiïfg a t l o o k i n g a t what I can see some d e c i s i o n has to oe Q) what are some of tne oth 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 ot tnem, communication i s 6 7 8 9 10 11 12 13 14 15 16 18 >.l 19 20 21 22 23 , .. 24 ':••„ 25^ 26 C.&-29 ^ r ^ i ^ 30 '^^  31  aa^On^a i^ JKtei---p-L 34 35 36 37 38 39 40 41 42 45 44 45 46 47 48 49 50 51 R; But when t h i n g s are noc g o i n g w e l l , a l l or a sudden you a r e aware t h a t you don't have ... and then you hear d i f f e r e n t people t a l k i n g a t th e group say about having t h e i r daughters or t h e i r whatever, i t makes i t even more so you r e a l i z e , my goodness I don't r e a l l y have anyone l i k e t h a t t o c a l l on. So don't want t o f e e l s o r r y f o r my s s l t out i t makes you more aware. I: Uiith some of the d i f f i c u l t i e s ( n o t i c e d t e a r s i n her e y e s ) Would you l i k e a t i s s u e ? R: Oh thank you. I ; Are you o.k.? R; Oh yeh I j u s t f e e l a b i t s o r r y f o r myself I guess . I j / And t h a t ' s o.k. every now and a g a i n . Pause With some of the d i f f i c u l t i e s t h a t you have been t a l k i n g about, how have you d e a l t w i t h them? R : I am not sui I s o r t of j u s t kinda t r y ricj^ t o -t-hink ahout them v e r y much. Try not t o . . . because I know i t doesn't h e l p because I c a r v ^ come up w i t h the s o l u t i o n s on my own. So I c a n ' t r e a l l y change them because p a r t of them are my husband. Ana so I haven't r e a l l y handled them, not r e a l l y . I : Or hanaleci them by way of a c c e p t i n g the t h i n g s t h a t you can and do have c o n t r o l over or I am not s u r e I u n d e r s t a n d . R; ït i s s o r t of 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 the f a c t t h a t miaybe I am r e a d i n g a i n t e r e s t e d i n i t , i accep; not 1 n t e r e s t e o , s- o i g u e s s- t n ^  t n e Ta c' ne s n o' t v) a t n e a f a i r b i t of .just a c c e p t i n g t h a t I ca n ' t cnange i-;nat he ooes l i k e and doesn't ^ike;. I : uh nun R: Say f o r moving, w e l l I c a n ' t .just a c c e p t t h a t because t h a t i s something t h a t has t o be done. But 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 Know what we have t o oo but I j u s t naven't s o r t of f a c e d i t . I thought I mes.- ^ c-?. 4 5 6 7 8 9 a n o t h e r . R: Yeh, 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 i n t e r e s t s . He i s i n t e r e s t e d i n photography 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 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 t o walk w e l l he l i k e s t o walk a b i t . So we had s o r t o" t r y i ng a i r r ; -ent . n t e r e s t s . - J t o f i n d something thai m a way an we can share ,'v^'A>wai^^"^^^^ together_, t v e n j u s t one t h i n g . 11 12 13 14 15 16 17 18 20 V.-t^ ûVAûcÊr^ Ki 21 22 23 24 25 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 49 50 51 b e t t e r He job 1 i kes t han but perhaps we cook and he Cioes a evenshough he came t o i t l a t e c o u l d go w a l k i n g but now he c a n ' t . But maybe when he has h i s w h e e l c h a i r maybe we c o u l d s t i l l go o u t . You know even our r e a d i n g m a t e r i a l s a re so d i f f e r e n t t o o . He l i k e s war books. But j u s t t o f i n d something you know. I am j u s t not r e a l l y s u r e . Because we don't have aJiv_-re 1 a t l v e s here see cause t h a t makes a having any r e l a t i v e s here . at Ives herid i f f e r e n c e t o o . Not Ui' I : How does t h a t make a d i f f e r e n c e f o r you? R: W e l l , g i r l s i n i t i s not l i k e . . . w e l l t h e r e arc _ my f a m i l y and my husband i s an o n l y he never 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 . But 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 so you c o u l d t a l k t o them about a n y t h i n g and share a n y t h i n g but i t i s hard l o n g d i s t a n c e 'cause they l i v e o v e r s e a s and i n the U n i t e d S t a t e s . pai g o JUSC They Have r u. r"i •Z' O •ents bac K l u h maKe: "lave G i r r e r e n c e . And now my p a s s e d away t o o . So l i k e when I i s j u s t l i k e I ' d n e v e r l e f t , vii p i c k UP a n d go on l i k e I n a v e n e v e r l e f t a r e t h e same a n d I g u e s s I am t h e same ! ' 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 : 3 t. v o u Know o f t h i n g wn'.<-.cn i s n i c e a l n i o s t 11 Ko ense o t c o m f o r t ' j^ ASiV ^ i ^ i - i ^ A « o m e \ K; I t h i n k s o s o m e b o d y t h e r e y DOG y a n d a b l e JUS anc 'A! CI W C .L J . o h a n d l e ï t o K n o w t n a s \ w h i l e we w e r e 'v a n o Tine , y o u. w e r e e V e r y t hi i n g . t n e r e i s h e r e a n d C- a P a D1 e I : uh nun 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 ^22 23 24 "25' 26 2 9 ^ 0 31 -32 33 34' 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 C'y-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 good. 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 thought I might 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 get . . . she i s ve r y good a t s u g g e s t i o n s and she doesn't f e e l bad i f you don't t a k e them i n o t h e r words . •iu n R: So I thougnt I might... and she knows the 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 z. sometimes 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 f e e l c a p a o i e of h a n o i i n g i c so I j u s t have t o t r y andmaybe j u s t l e t i t go which i s n ' t t h e b e s t way t o handle t h i n g s but t h e n . . . ner . t u up and I I: Can you g i v e me an example? Something you f e e l you are not ca p a b l e of h a n d l i n g . R: W e l l my own s h o u l d e r problem. I t has been g o i n g on and on f o r so 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 something wrong but I am not sure t h a t he saw the r i g h t t h i n g . I r e a l l y have a problem and I wasn't a b l e t o get thought to the d o c t o r s so I j u s t a c c e p t e d i t as i t was and 1 thought as oon as I am w e l l I am goi n g back home t o g e t l e a s t I me when and say i n e v e r y d i d m e d i c a l a t t e n t i o n because I f e l t a t would have s i s t e r s t h a t c o u l d observe I go t o t h e d o c t o r c o u l d come a l o n g "Yeh I saw her" way . Now I don' 1 h e l p me a Pause was v e r y e m o t i o n a l 5el q u i t e t h a t bad l i t t l e b i t . uh o e r o r e coming to tne group, now a i d you r e e l y o u w e r e c o o i n g o v e r a 11 :' R '• Uh I guess i n a way I ... sometimes I f e l t I was cog 1ng o.k. oecause the o n l y t h i n g I c o u l d oo Wo'S CO t o the n o S ' p i t a i and v i s i t nim every aay . Course i t was t w i c e a dav t i i the hours changea i n October and then Î changea t o once 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 w e l l . I would corne noiTie and make supper and l a y down a b i t and go t o bed. 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 31 32 33 34 35 36 38 39 40 41 42 43 44 45 46 47 43 49 50 R: uhm and t r y i n g over my head t y p e of Lo l e t ev -y thinig_ g e t e m o t i o n a l l y . And nnere :>ette"i were and some days o t h e r days a woulan t r e e l •sn. g r e a t but I always went to the h o s p i t a l because I f e l t a t l e a s t as lon g as 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 d i f f e r e n c e . I: When you say not f e e l i n g so w e l l , would t h a t be p h y s i c a l l y or would t h a t be e m o t i o n a l l y ? R: W e l l p h y s i c a l l y I was never r e a l l y g r e a t but e m o t i o n a l l y and I t h i n k even m e n t a l l y . But f o r t h e t i r s t two t h r e e months I guess you know i t was r e a l l y h a r d . Mind you t h e r e were more people who went t o see him because he was c l o s e r t o home and so I wasn't q u i t e s o . . . I d i d n ' t f e e l as though he was b e i n g n e g l e c t e d or a n y t h i n g because t h e r e were q u i t e a few pe o p l e went UP. But as time went c7n people do get on w i t h t h e i r l i v e s you know and they have t h e i r own f a m i l i e s you know I : uh huh . : . : • R; Then -le D i t worse lon g as som? I o f J2egan_to f e e l a l i t ' wasn't a b l e t o and s t a y as the o t h e r p e o p l e who would s t a y f o r e v e r where maybe I cou IH st-av o n l y twenty minutes and c o p i n g i s then I had t o l e a v e . So I suppose one t h i n g and a t the same t i m e , I had a l o t o f ti m e t o s o r t of t h i n k about what would happen and then I would get aown e m o t i o n a l l y t o o because I j u s t d i d n ' t know what was happening. You know h i s h a rid and h i s l e g weren't coming bacK so I hao more time t o t h i n k about- him and the f u t u r e and then I r e a l i z e d t h a t w e l l r e a i i y 1 nao to j u s t w a i t and see what nappens because you c a n ' t l i v e i n what might happen and what mignt n o t , you're t a k i n g on not o n l y t o d ay's problems but othe r day and i t i s c a n t n a t )f came .jU^ u wou1o come to rea11z< take c a r e of t o d a y . L I i ci u J. had t o •~'0 i t sounos 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 you 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 . . . I ; and m e n t a l l y 7 • • ' ' ,. • 8 • • R : tih huh 10'' l^:- How about p h y s i c a l l y ? 11 12 R: P h y s i c a l l y I guess i am the same as a l w a y s . 13 My g e n e r a l h e a l t h i s good. I had a check up. I • 14 • : ^  mean d i d n ' t see a d o c t o r f o r 20 y e a r s because 15 •• • • I was always w e l l t h e r e f o r e when I d i d go w i t h -16; . " • t h i s problem, t h e d o c t o r d i d n ' t know me of 17 • . -' c o u r s e and so he asked what i s your age. And 4.8 .:• as soon as he heard my age, w e l l here i s •19 -. 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 Î20 •- •• e v e r y t h i n g . I found t h a t v e r y hard because I •^21 '• don't go t o d o c t o r s u n l e s s t h e r e i s something 22 wrong but then they don't know t h a t because 23 - - they aon't know me. So t h a t was kin d a hard t o '24 ~ t a k e . . . . . . 25 _ ë I: Do you. t h i n k your s h o u l d e r or any o t h e r k i n d s of aches or 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. Not r e a l l y , i t had improved a c t u a l l y s i n c e ^^^W 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 has ^ ^ ^ ^ ^ w ^ i - v : 3 2 - r f ^ ) d e f i n i t e l y improved. I c o u l d n ' t s i t t h i s l o n g "^'^  • .33 b e f o r e so he has done something. I am a f r a i d 34, , , . t o go back because he may do something t o make •35 i t worse. 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 c a r e g i v e r 38 a f f e c t e d you s o c i a l l y ? 39 40 R: Uhm we naven't hao r e a i l y wnat you would 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 because he 42 has been nome w i t h c o l i t i s , when he r i r s t got 43 c o l i t i s . I am t r y i n g t o t h i n k how many y e a r s 44 ago "nat i s . And he raa always worked 45 a f t e r n o o n s n i f t so t h a t s o r t of c u t down our 46 s o c i a l l i f e q u i t e a b i t . And I had worked 47 d u r i n g the cay s o . . . g r a d u a l l y over tne y e a r s 48 a l o t of t h e people we've Known have moved away 49 so our s o c i a l l i f e was q u i t e come down ex c e p t 50 a few p e o p l e . And some of them are no l o n g e r 51 C.t m:^ -^ cu\.i^ tJ4 w i t h us. Uhm so don't know t h a t t h a t i n ^ fiOàùJii^j i t s e ^ l f j i a s r e a l l y a f f e c t e d i t . T T h T n F r r T ^ d o 4 5 6 7 8 9 10 11 12 13 14 15 16 17 is 19 • '20 ~ 21 frx> pC)o:Jli^ d4\ . .,23 . •••.25--',,-; • 26 V 29 30 31 32 33 34 35 36 37 38 39 40 41 42 go to c h u r c h and we have the s e n i o r s on Tuesday, I do go t h e r e on Tuesday mornings and uh but he never went so i t wasn't something we snared . i : O.K. how about s o c i a l l y you then? R : As I say i t i s ma i n l y i t would be around my ch u r c h cause i t i s not to f a r from where I i : So you naven t nox. been a b l e t o go as o r t e n as you had b e f o r e or what I am s a y i n g i s you s r i l l have been a b l e t o do what you ... R: I t h i n k s o . I ; M a i n t a i n t h e s o c i a l c o n t a c t s t h a t you had b e f o r e . I would say about the same , yeh. Î haven't got any d i f f e r e n c e t h a t way. ( l \ Can you t e l l me about what i t was l i k e o e i n g i n the group? R: Uhm i t f e l t ... I don't l i k e t o say good, but i t f e l t t o know t h a t everybody t h e r e was i n v o l v e d i n t h e same s o r t of problems i n a way of c a r e g i v i n g because I c o u l d hear t h e r e was problems w i t h c a r e g i v i n g . And so i t f e l t good to Know t h a t you were not a l o n e . W e l l i t was su p p o r t to know t n a t t h e r e c;re o t h e r p e o p l e 45 46 47 48 49 50 51 who a r e a o i n g throusjh e x a c t l y thg- ?:a_me^  or almost e x a c t l y t h e same as what you are g o i n g t h r o u g h . So yeh 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 from i t a no I am g l a d I went and t h a t I was a b l e to go because I r e a l l y d i d n ' t t n i n K tna,t. i wouid De aDie to go . educat iona1 ? 'r.'- L t n i :";!'•. ootH, YoH t'C-t" ^tom wnat i nearo and from tne papers you gave us. i • i ïi w n a t w a y s ;' R: W e l l I t h i n k wnen vou gave us t h e tne 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 hadn't thought of as s t a g e s , I had j u s t 2 Oi^ O t h o u g h t of as you know you handle i t or you 3 ' , ' ^  d o n ' t . So t h a t was i n f o r m a t i v e . And you can . . - ^^ .^.^ wsiWx ^ A A / ) ^ ^ C € ^ ^ruWB check on t h a t ano say w e l l i t i s p a r t ^ 5 ^ ^ f > ^ - f ^ ^ ^ = T ^ 5 o f t h e c a r e g i v e r 's group and you have t o l e a r n 6 how t o handle i t as they come a l o n g . I t helped 7 me t o u n d e r s t a n d because I d i d n ' t know 8 . a n y t h i n g about .. w e l l I o i d n ' t know a n y t h i n g 9 about the d _ i f f e r e n t s t a g e s you go through and 10 now I am aware t h i s can 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 perhaps you don't get t o the p o i n t where you 13 a r e h i g n on the thermometer. And i t might 14 j^Ju-iA'csl C<.> rhappen and I t h i n k some of i t w i l l depend on 15 iifcWUsso^ I him whether he i s c o o p e r a t i v e or not because 16 co^^A yQ,j g.j-ç your b e s t f o r someone 17 and they a re not 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 she 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 not sure whether her mother 21 was c o o p e r a t i v e or u n c o o p e r a t i v e or whether i t 22 j u s t constant c a r e makes you more edgy, I am . , . /• , 23 not s u r e so I guess maybe i t would depend on ' - • 24 how my husband i s . Uhm ... I;Sut a g a i n b e i n g in the group a l l o w e d you to 27 hear th o s e o t h e r e x p e r i e n c e s ? 28 29 R: E x a c t l y . ' • ' 30 31 I : So was i t e m o t i o n a l f o r you t o be i n the 32 group? 33 34 _. R : I am not 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 35 C--?-M^-**-^ -^'•'"y^  e m o t i o n a l l y . Perhaps i f I was a l r e a d y g i v i n g r Si rr.-^ hêA^ 3^ , n ^ ^ ^ care_at_home then I r e s i t h a t t a l k i n g about ^ ^ ' . ^ 37 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 \ 58 • might nave out he i s not nome y e t , I am not 39 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 t h i n k 40 £N.r^  fyjCiO-iiji i t W3S morc ijDJiivciiial-ion and e d u c a t i o n a l and r 41 u l ^ ; ^ more knowieage which I haan't known. I would -42 say on t h a t s i d e , 43 44 I : Was i t a c o m f o r t a b l e s e t t i n g f o r you? 45 46 R: I found i t q u i t e c o m f o r t a D i e t h e r e . 48 ( 1 5 1 n w hi a t •/•j a y s t. n s n r; .3 s o e i ii g i n t n e g r o u. P en changed t h i n g s f o r you? Q '''''' ^^'^ - '^^'"^ m o r e _ a w a r e ^ Y ^ What c o u i o r^a'cypevi ano now t h i n g s c o u l a be. 4 5 f. 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 27 28 29 30 31 32 33 34 35 36 •jj / 38 39 40 41 42 43 44 45 46 47 48 49 Having t h a t i n f o r m a t i o n because i f you have the i n f o r m a t i o n i t wouldn't seem so bad when teiA u j ^ d J u ^ ^ ^ ^ ' ^ ^ t ^ ^ " - 3 i^sppens t h a t î aon't u n d e r s t a n d or fClThs C-fy. j c a n ' t do a n y t h i n g about. Because I have the /Informat-ion t h a t the c a r e g i v e r -çan get i n t o (yj^S aO.Vuiu^ TÙ ' d i f f e r e n t e m o t i o n a l s t a t e s ^ So h o p e f u l l y h a v i n g t-hat knowledge and a t l e a s t I won't f e e l bad aboui: i t . a t l e a s t I ' l l know tTlat: w e l l t n 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 or i t c o u l d be P a r t of the p a t t e r n , I : And maybe h i s d i s a b i l i t y P a r t of h i s a d j u stment? ind h i s i l l n e s s ? 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 mcuh. I-l w i l l a f f e c t me sometimes. You c a n ' t l o o k a t somebody who had been w a l k i n g and Xnow he i s i n a w h e e l c h a i r but i f he can a c c e p t i t , I ' l l f i n d i t e a s i e r as w e l l . I : So i f we l o o k e d a t the group and the changes t h a t i t may have brought f o r you around d e a l i n g w i t h some of t h e d i f f i c u l t i e s you have t a l k e d about e a r l i e r today l i k e uhm some of t h e communication d i f f i c u l t i e s , have some of the t h i n g s from the group changed how you are g o i n g t o d e a l w i t h t h a t . R: I hadn't r e a i l y thought about t h a t y e t . I ; Or even around d e c i s i o n making which you i d e n t i f i e d as b e i n g a ... R : u h I : As you t a l k i t sounds l i k e , and I don't want t o De p u t t i n g woros i n your mouth so t e l l me i f I am r i g h t or wrong, out i t sounds l i k e 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 t o o e a l i / i i t h sonie oi tne c h a l l e n g e s t h a t you a r e a o i n g to be f a c i n g . R• I t h i r K t nat i s but the f a c t t n a t w i t h my s h o u i d s r . p e r s o n p n v s i c a i l y t r u e . I t h i n k t h a t ^s t r u e I a l s o f e e l a b i t b e t t e r [ am r e a l l y q u i t e a s t r o n g and have e m o t i o n a l l y . m e n t a i l y . r-J o w t hi a t n i v b e t t e r I do o e i i e v e t n a t b e t t e r than I would have ago . Si-iOUioer i s a b i t I can nanala t h i n g s even a c o u p l e montns 1 uhm have t h e r e oeen a i f f e r a n c e s f o r you i n how you d e a l w i t h s t r e s s ? 36 37 38 39 40 41 42 43 44 45 46 47 48 49 =.0 •r\h S\ 6 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 R: I am not r e a i i y s u r e t n a t i t has 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 p r a y e r m a i n l y t o -r e l i e v e s t r e s s . I get a g r e a t peace w i t h p r a y e r and so I am not s u r e , i t c o u l d have, I'm .just not s u r e . I:O.K. How about t h i n g s i n terms of c a r i n g f o r y o u r s e l f ? Pause Uhm c e r t a i n l y u n d e r s t a n d i n g your husband and h i s i l l n e s s . Has i t made some changes f o r you i n t h a t way of t h i n o t i n g about t h o s e t h i n g s . R: No I don't t h i n k so. I have never r e a l l y been a person t o spend a l o t of time on m y s e l f . You know, I always f e l t as l o n g as I was p r e s e n t a b l e , I have never r e a l l y been one f o r g o i n g t o t h e h a i r d r e s s e r . I a l w a y s f e e l as l o n g as I am p r e s e n t a b l e , I don't sx-end a l o t of t ime on m y s e l f . I: What about c a r i n g f o r y o u r s e l f i n xhe oth e r s e n s e s when we t a l k e d about d o i n g c ne t h i n g s t h a t you l i k e t o oo? 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 w i t h the n e i g h b o r s . Has t h e group 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 not r e ^ s i i l y s u r e about t h a t because the neighbor Z v i s i t e d a c t u a l l y has come over t o me so 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 ~ thought I might j u s t go over and v i s i t h er. ?o I d i d . fSo I 'm not r e a i l y s u r e whether the -roup had t a n v t h i n g to ao w i t h t h a t , i t c o u l d -^a e. Sut I am not s u r e . I would l i k e t o be a i o t more :. i o v e to a moment Because s h o u l d e r --ting r e c s o c i ajole. There are so many t h i n g s I' do CTnfor t u n a t e i y p h y s i c a l l y at t n anyway ï am ..just not r e a i i y a b l e t o . when the p r e s s u r e b u i l d s up i n my th e n my f a c e . . I d o n r t know i s i t gs" now ? I ; I t h i n k i t i s ve r y warm i n here R; I t does get va r y r e c when the p r e s s u r e b u i l d s UP. I; Are votj r e e l i n g i t s t a r t to b u i . i t UP now? R; There i s a l i t t l e b i t , not much tinougn . I know when I have reached my l i m i t . 3 4 5 6 7 8 9 10 11 12 13 15 - p P ^ ^ l ' ^ ^ ^ ' ^ 17 18 19 20 21 22 23 24 5^ J 27 28 29 30 31 V 34 35 36 38 39 40 4 1 ^ 4 ^ A 44 45 46 47 48 49 . ^0 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 group 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 ? R ; u h I : More p o s i t i v e l y , d i f f i c u l t ? more n e g a t i v e l y , more R: I J e l l I l i g h t now t h i n k I see because I . . i t i n a more ^ p o s i t i y e h e a r i n g the gr"^up taXi.; and how some people were f i n d i n g i t r e a l l y . . . t h e 2 l a d i e s o p p o s i t e me w i t h t h e i r mother were perhaps s h a r i n g t h e d u t i e s but s t i l l t hey had a p o s i t i v e o u t l o o k because 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 hear the p o s i t i v e s t o o . Because when you have, e s p e c i a l l y i n the f i r s t few months and when you know you are 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 to hear the 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 the group helped me a l o t . I:And o v e r a l l , how you are c o p i n g now v e r s u s how you were c o p i n g b e f o r e the group? R: Uhm so much has to 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 andle 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 of a i l the t h i n g s I want to do but t n e n . . . anvway out 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 heipeo me t o u n d e r s t a no a l o t . I : uh hun R: Ana a l s o to a c c e p t some of t h e t h i n g s wnich I guess we are a l i t t l e a f r a i a of or' not e x a c t l y a f r a i d , out the j e a r of the unknown because now I am more aware or what i t i s a i l about. And I o e l i e v e t h a t 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 aodressed t h a t you would l i k e us t o know, a n y t h i n g about e i t h e r the group e x p e r i e n c e or b e i n g a c a r e g i v e r t n a t would 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 R : â C y e t i t am s u r e you a r e 24 hour i s a l i t t l e d i f f i c u l t t o say because I many t h i n g s w i l l come UP. YOU knew i f 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 you 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 of what i t i s a l l about but u n t i l he i s home and t o i ;ay the whole group was. g r e a t . v e r y s i t u a t i o n i s d i f f e r e n t , uh, but I would I : We i i I time and p l e a s u r e rs< you s h a r e d o t h e r s too ^ a l l y want t o thank you f o r your f o r p a r t i c i p a t i n g . I t was a i s v i n g you and the i n f o r m a t i o n t h a t w.as vaiu.able and had an impact on r e a l •f- u . R; We l l I hope 5 0 . 

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