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Care demands, distress, and psychological well-being of family caregivers of persons with advanced cancer… Bredin, Colleen Blair 1989

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CARE DEMANDS, DISTRESS, AND PSYCHOLOGICAL WELL-BEING OF FAMILY CAREGIVERS OF PERSONS WITH ADVANCED CANCER LIVING IN THE HOME By COLLEEN BLAIR BREDIN B.Sc.N., Lakehead University, 1985 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING in THE FACULTY OF GRADUATE STUDIES (School of Nursing) We accept t h i s thesis as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA A p r i l 1989 @ Colleen B l a i r Bredin, 1989 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 scholarly 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 without my written permission. Department of The University of British Columbia Vancouver, Canada DE-6 (2/88) A b s t r a c t T h i s i s a d e s c r i p t i v e c o r r e l a t i o n a l study designed t o examine f a m i l y c a r e g i v e r s ' p e r c e p t i o n s of ca r e demands of persons with advanced cancer l i v i n g i n the home s e t t i n g , p e r c e p t i o n s of d i s t r e s s i n r e l a t i o n t o these demands, and the c a r e g i v e r s ' p s y c h o l o g i c a l w e l l - b e i n g . In a d d i t i o n , the r e l a t i o n s h i p s among these v a r i a b l e s were e x p l o r e d . The Lazarus and Folkman (1984) theory of s t r e s s , a p p r a i s a l , and coping guided t h i s study. A convenience sample of 40 f a m i l y c a r e g i v e r s who were p r o v i d i n g c a r e i n the home to a r e l a t i v e with advanced cancer completed the C a r e g i v e r ( S t r e s s o r ) Inventory, a r e v i s e d Maslach Burnout Inventory, and a p a r t i c i p a n t i n f o r m a t i o n sheet. O v e r a l l , the m a j o r i t y of cancer p a t i e n t s i n t h i s study were minimally dependent on t h e i r c a r e g i v e r . A smal l p r o p o r t i o n r e q u i r e d moderate a s s i s t a n c e with v a r i o u s c a r e demands and no cancer p a t i e n t s were t o t a l l y dependent on t h e i r c a r e g i v e r . The type of a s s i s t a n c e t h a t was r e q u i r e d was r e f l e c t i v e of the p a t i e n t s ' p h y s i c a l , p s y c h o l o g i c a l , and i l l n e s s treatments needs. The m a j o r i t y of f a m i l y c a r e g i v e r s experienced mi l d p e r c e p t i o n s of d i s t r e s s i n r e l a t i o n t o v a r i o u s p a t i e n t c a r e demands. A sm a l l p r o p o r t i o n experienced no d i s t r e s s . The o v e r a l l demand f o r p a t i e n t c a r e was s i g n i f i c a n t l y r e l a t e d t o c a r e g i v e r s ' p e r c e p t i o n s of d i s t r e s s (rho=.51). The outcomes of c a r e g i v i n g were examined i n r e l a t i o n t o emotional e x h a u s t i o n , d e p e r s o n a l i z a t i o n , and personal accomplishment which are m a n i f e s t a t i o n s of burnout. Approximately i i i half the family caregivers were found to experience moderate to high l e v e l s of emotional exhaustion and/or low l e v e l s of personal accomplishment, and a small proportion experienced feelings of depersonalization. S i g n i f i c a n t p o s i t i v e relationships were found between caregivers' o v e r a l l perceptions of d i s t r e s s and the manifestation of emotional exhaustion and depersonalization but not to personal accomplishment. The components of burnout were not related to the o v e r a l l demand for patient care. This finding suggests that caregivers' subjective appraisal of d i s t r e s s had a greater impact on caregivers' psychological well-being than did the actual hands—on demand to provide patient care. The findings of t h i s study were discussed in r e l a t i o n to p a r a l l e l research studies, methodological l i m i t a t i o n s , and the theoretical framework. As well, implications for nursing practice, theory and education, and recommendations for future research were i d e n t i f i e d . i v Table of Contents Abstract i i Table of contents i v L i s t of Tables v i i L i s t of Figures v i i i Acknowledgements ix CHAPTER ONE: Introduction Background to the Problem 1 Statement of the Problem 4 Purpose of the Study 4 Theoretical Framework 4 Cognitive Appraisal 5 Coping 8 Adaptational Outcomes 9 Summary 9 Research Questions 10 Significance of the Study to Nursing ......... 10 De f i n i t i o n of Terms 12 Assumptions 13 Limitations 14 Overview of the Thesis Content 14 CHAPTER TWO: Review of the Li t e r a t u r e Introduction 16 Situation Factor: Care Demands 16 Summary 24 Cognitive Appraisal of Distress 25 Summary 37 Adaptational Outcomes 38 Summary 46 Summary of the Lit e r a t u r e Review 47 CHAPTER THREE: Methodology Introduction • 50 Research Design 50 Sampling Procedure 50 Data C o l l e c t i o n Instruments 52 Caregiver (Stressor) Inventory 52 Maslach Burnout Inventory ............... 55 Information Sheet 59 Data C o l l e c t i o n Procedures 59 Et h i c a l Considerations 60 Data Analysis 61 V CHAPTER FOUR: Presentation and Discussion of Results Introduction 62 Cha r a c t e r i s t i c s of the Sample 62 Family Caregivers . . 63 Care Recipients 65 Findings 66 Research Question 1: What are the Care Demands of Persons with Advanced Cancer Li v i n g in the Home Setting? . 66 Research Question 2: What i s the Level of Perceived Distress Experienced by Family Caregivers r e l a t i v e to Care Demands of Persons with Advanced Cancer? 67 Research Question 3: What i s the Psychological Well—Being Among Family Caregivers of Persons with Advanced Cancer? 68 Research Question 4: What i s the Relationship between Care Demands of Persons with Advanced Cancer and Perceptions of Distress Among Family Caregivers?.... 73 Research Question 5: What i s the Relationship Between Perceptions of Distress and Psychological Well—Being Among Family Caregivers?. 75 Discussion of the Results 76 Cha r a c t e r i s t i c s of the Sample 76 Care Demands of Persons with Advanced Cancer Li v i n g in the Home 78 Perceptions of Distress Among Family Caregivers 81 Psychological Well—Being Among Family Caregivers 92 Summary 101 CHAPTER FIVE: Summary, Conclusions, Implications, and Recommendations Introduction 104 Summary 104 Conclusions I l l Implications for Nursing Practice 112 Recommendations for Future Research 117 References 120 v i Appendices Appendix A ••• 125 Appendix B 131 Appendix C Appendix D i 3 6 v i i L i s t of Tables Table I Age of Family Caregiver 64 II Length of Time in Caregiver Role 64 III Hours per Day Spent Caregiving 65 IV Length of Time Cancer Patients have Been Coping with Cancer 66 V The Demand for Total Patient Care Among Family Caregivers 68 VI The Demand for Total Care Relative to Sp e c i f i c Areas of Patient Care 69 VII Family Caregivers' Overall Perceptions of Distress in r e l a t i o n to the Overall Demands of Patient Care 67 VIII Perceptions of Distress Among Family Caregivers in Relation to S p e c i f i c Areas of Patient Dependency 71 IX Frequency and Intensity of Burnout Among Family Caregivers 72 X The Relationship Between Family Caregivers' Perceptions of Distress and Sp e c i f i c Patient Care Demands 74 v i i i L i s t of F i g u r e s F i g u r e 1 . T h e o r e t i c a l Framework f o r P e r c e p t i o n s of D i s t r e s s and P s y c h o l o g i c a l Well-Being .. 6 Ac know1edgemen ts I wish to extend a very special thanks to the members of my thesis committee, Professors Dr. Ann Hilton (chairperson) and Marilyn Dewis. Their guidance, knowledge, and continued support have been genuinely appreciated. I am also grateful to the Home Care nurses from the Vancouver Health Department and to Theresa Hotel from the White Rock Hospice Society for t h e i r assistance in helping me to locate participants for my study. I am also indebted to the family caregivers who so w i l l i n g l y took the time to p a r t i c i p a t e in my study. F i n a l l y , I would l i k e to thank my partner Craig and my wonderful family for t h e i r endless support and encouragement. 1 CHAPTER ONE Introduction Background to the Problem Cancer i s the second leading cause of death among Canadian men and women ( S t a t i s t i c s Canada, 1988). In 1988, j u s t under 100,000 new cases of cancer were diagnosed in Canada, and over half that number were predicted to die from the disease (Canadian Cancer Society, 1988). While the incidence rate of cancer continues to be high, there has been a s i g n i f i c a n t decrease i n cancer mortality rates over the past decade i n part due to advanced biomedical technology (Canadian Cancer Society, 1988). Lower mortality rates are largely a r e f l e c t i o n of the fac t that more and more patients are being cured of the disease altogether, or are surviving for longer periods of time (Canadian Cancer Society, 1988). Unfortunately s i t u a t i o n s continue to e x i s t where aggressive, curative therapies f a i l to arrest the progression of the cancer disease. When hope for a cure i s no longer achievable, the goals of appropriate intervention may then s h i f t from curative to p a l l i a t i v e , where the focus of care centers on patient comfort and symptom control (Holing, 1986). This stage of the cancer experience i s described as the advanced or terminal phase of the i l l n e s s (Northouse, 1984). Family p a r t i c i p a t i o n i s an important component of p a l l i a t i v e care. Trends in p a l l i a t i v e care indicate that family members have increasingly become the major providers of care outside the hospital setting during treatment, as well as advanced phases of the i l l n e s s (Stephenson-Cino, Roe, Latimer, Walton & Thompson, 1987). This trend i s largely a manifestation of the well documented s o c i a l and economic benefits of home-based care (Stephenson-Cino et a l . , 1987; Blues & Zerwekh, 1984). In the s o c i a l realm, studies reveal that chronic and terminally i l l patients cared for in t h e i r homes experience more dignity and comfort (Hinton, 1979), more control and psychosocial support (Blues & Zerwekh, 1984), and t h e i r f a milies have less d i f f i c u l t y adjusting to the impending death than patients cared for in other settings (Hinton, 1979). Economically, home-based care may be cost e f f e c t i v e i n that i t reduces health care costs associated with h o s p i t a l i z a t i o n (Hinton, 1979; Stephenson-Cino et a l . , 1987) and i t reduces the unnecessary u t i l i z a t i o n of scarce acute care hospital beds (Stephenson-Cino et a l . , 1987). While home-based care i s advocated as an ideal a l t e r n a t i v e to hospital—based care, many l i t e r a t u r e sources reveal that i t may have a negative impact on the well—being of family caregivers ( Z a r i t , Todd & Z a r i t , 1986; Fengler & Goodrich, 1979). Several studies e x i s t which indicate that caregivers of the c h r o n i c a l l y i l l experience low l e v e l s of l i f e s a t i s f a c t i o n (Fengler & Goodrich, 1979), physical and psychosocial symptoms of burnout (Ekberg, G r i f f i t h & F o x a l l , 1986; Lingren, 1985), and s o c i a l i s o l a t i o n and f i n a n c i a l pressures (Chenoweth & Spencer, 1986). Much less i s known about the impact of caregiving on family members who provide ongoing care i n the home to persons with terminal cancer. Family caregivers are often forced to assume new roles and r e s p o n s i b i l i t i e s that may be physically and emotionally overwhelming. These roles may encompass "...learner in a new and p o t e n t i a l l y frightening s i t u a t i o n , continuer of ongoing family l i f e and r e s p o n s i b i l i t i e s , caregiver and/or supporter, griever for an unwanted impending loss, decision maker and c r i s i s intervenor with the patient, and anticipator of a vastly changed l i f e a f t e r death" (Blues & Zerwekh, 1984, p. 245). Given the multitude of demands and potential stressors, family members are l i k e l y to experience feelings of d i s t r e s s as they attempt to cope with the physical and emotional components of caregiving. The management of care demands and patient symptoms have been i d e n t i f i e d as two components of caregiving which family members perceive as d i s t r e s s f u l (Hays, 1986; Stetz, 1987; Hinton, 1979). Family caregivers vary considerably in t h e i r appraisal of these components. Some caregivers are able to perform day-to-day care demands with r e l a t i v e ease, while others experience feelings of s t r e s s and uncertainty (Blues & Zerwekh, 1984). Perceptions of d i s t r e s s have been found to be related to caregivers' perceived lack of knowledge and confidence to perform complex care tasks and fear associated with the occurrence and management of d e b i l i t a t i n g patient symptoms (Blues & Zerwekh, 1984). As well, studies suggest that perceptions of d i s t r e s s are p o s i t i v e l y related to the caregiver's decision to h o s p i t a l i z e the cancer patient despite t h e i r desire to care for the patient at home (Hinton, 1979; Hays, 1986; Welch, 1981). Statement of the Problem Family members often bear the greatest r e s p o n s i b i l i t y f o r providing ongoing care to persons with advanced cancer. The complexity of t h i s caregiving role however, i s poorly understood. L i t t l e i s known about how burdensome the caregiver role i s to family members. Few studies can be found which describe the actual care demands of persons with advanced cancer l i v i n g in the home. As well, very few studies e x i s t which examine how the day-to-day care demands of persons with advanced cancer are perceived by family caregivers. Furthermore, few studies can be found which examine the impact of caregiving on the psychological w e l l -being of family members who provide ongoing care i n the home to persons with advanced cancer. F i n a l l y , no studies have been found which examine the rel a t i o n s h i p between the psychological well—being of family caregivers of persons with advanced cancer, and family caregivers' perceptions of d i s t r e s s in r e l a t i o n to caregiving. Purpose of the Study The purpose of t h i s study was to investigate the relat i o n s h i p s among care demands of adults with advanced cancer, family caregivers' perceptions of d i s t r e s s i n r e l a t i o n to various care demands, and the psychological well—being of family caregivers. Theoretical Framework The t h e o r e t i c a l framework for t h i s study was Lazarus and 5 Folkman's (1984) theory of stress, appraisal, and coping. According to t h i s framework, appraisal r e f e r s to complex cognitive processes that intervene between an encounter and the reaction to the encounter (Lazarus <& Folkman, 1984). Cognitive appraisal processes are mediated by person factors and s i t u a t i o n factors which dynamically form a psychological environment i n which the encounter occurs. Through the processes of cognitive appraisal, the person evaluates the si g n i f i c a n c e of what i s happening in the environment in terms of i t s e f f e c t on his or her well-being. This appraisal p r e c i p i t a t e s a dynamic coping process which i s continuously mediated by cognitive reappraisals. The si g n i f i c a n c e of appraisal and coping processes i s that they a f f e c t short and long term adaptational outcomes (see figure 1). Cognitive Appraisal According to Lazarus and Folkman (1984), three types of cognitive appraisals e x i s t : primary appraisal, secondary appraisal, and reappraisal. Primary appraisal i s the person's evaluation of whether he or she has anything at stake in the encounter. The encounter may be appraised as i r r e l e v a n t , benign-p o s i t i v e , or s t r e s s f u l . Irrelevant and benign-positive appraisals occur when an encounter i s construed as having no impact or a posit i v e impact on the person's well—being. A stress appraisal involves the mobilization of coping e f f o r t s needed to deal with a perceived harm or loss, threat, or challenge. A stres s appraisal that involves a perceived harm or loss, stimulates the mobilization of coping e f f o r t s to deal with some 6 PERSON «-Commitments B e l i e f s •4--^SITUATION Care Demands of Advanced Cancer Patients L i v i n g At Home V COGNITIVE APPRAISAL Perceptions of Distress REAPPRAISAL A Primary Appraisal (What i s at Stake) Benign-Irrelevant S t r e s s f u l P o s i t i v e Harm/Loss Challenge Threat Secondary Appraisal (Coping Options) COPING RESOURCES COPING CONSTRAINTS COPING STRATEGIES (Prob1em-focused, Emotion —focused) ADAPTATIONAL OUTCOMES -Morale/Psychological Wei1-being -Functioning in Work and Social Living —Somatic Health Figure 1. Theoretical Framework for Perceptions of Distress and Psychological Well-Being. Note. Adapted from Coping with the Uncertainties of Breast Cancers Appraisal and Coping Strategies (p.7) by B. A. H i l t o n , 1987. Ann Arbor, Mis University Microfilms International, No. 87-00,205. Reprinted with permission. 7 form of damage or loss that the person has already sustained. A stress appraisal that involves a perceived threat, stimulates the mobilization of coping e f f o r t s to deal with harms or losses that have not yet occurred but are anticipated. F i n a l l y , a stress appraisal that involves a perceived challenge, stimulates the mobilization of coping e f f o r t s to deal with a potential gain or growth that i s inherent in an encounter. Secondary appraisal i s the person's evaluation of what might and can be done to prevent or overcome a harm or threat, or to maximize the potential for gain or benefit. Secondary appraisal i s an evaluative process that takes into account the a v a i l a b i l i t y , as well as potential effectiveness of various coping options. Primary and secondary appraisals are interdependent processes that converge within the same encounter to determine the degree of stress and the type of reaction. Reappraisal follows and possibly modifies an e a r l i e r appraisal of an event based on new information from the person and/or the environment. Hence, reappraisal i s an ongoing, c y c l i c a l process that a f f e c t s coping and coping outcomes. Person and s i t u a t i o n factors are interdependent components that can be considered antecedents of appraisal. Person factors are distinguished as commitments and b e l i e f s which i n t e r a c t to shape the person's understanding of an encounter in terms of i t s meaning and s i g n i f i c a n c e for well-being. Situation factors are the formal properties of a s i t u a t i o n that influence whether or not the s i t u a t i o n i s appraised as harmful, threatening, or challenging. Novelty, p r e d i c t a b i l i t y , event uncertainty, and the temporal factors of imminence, duration and temporal uncertainty are s i t u a t i o n a l properties that influence the nature of the appraisal. Coping Coping i s defined as the person's "...constantly changing cognitive and behavioral e f f o r t s to manage s p e c i f i c external and/or internal demands that are appraised as taxing or exceeding the resources of the person" (Lazarus & Folkman, 1984, p. 141). Coping has two major functions: regulating s t r e s s f u l emotions (emotion—focused coping) and a l t e r i n g the person—environment rel a t i o n s h i p that i s causing d i s t r e s s (problem-focused coping). Problem- and emotion—focused forms of coping are used with d i f f e r i n g frequencies depending on the nature and in t e n s i t y of the perceived s t r e s s . Coping i s determined by i n t e r r e l a t i o n s h i p s among personal and environmental coping resources, coping constraints, and stress appraisals. According to Lazarus and Folkman (1984), coping resources are influenced by the person's appraisal of the encounter. Although coping resources may be av a i l a b l e , t h e i r use for coping may be in h i b i t e d by the extent to which the person appraises the encounter as s t r e s s f u l or threatening. U n t i l the negative emotions that may accompany stress appraisals are regulated by emotion-focused forms of coping, problem-focused forms of coping may be impeded, which in turn influence the nature of adaptational outcomes. Adaptational Outcomes According to Lazarus and Folkman (1984), the s i g n i f i c a n c e of appraisal and coping processes i s that they ultimately a f f e c t three major classes of short- and long-term adaptational outcomes: s o c i a l functioning, morale, and somatic health. Social functioning refers to the manner in which the individual f u l f i l l s various s o c i a l roles and interpersonal r e l a t i o n s h i p s . Its short-term outcome p a r a l l e l s an i n d i v i d u a l ' s judgement about how e f f e c t i v e l y a s i t u a t i o n i s coped with on a day—to-day basis. Morale refers to how people f e e l about themselves and the conditions of t h e i r l i f e . The short-term outcome of morale p a r a l l e l s the po s i t i v e and negative emotions that are generated as an encounter unfolds. These emotions are r e f l e c t i o n s of the ind i v i d u a l ' s momentary evaluation of his or her psychological well—being. F i n a l l y , somatic health refers to physiological outcomes of st r e s s , emotion and coping. Summary According to Lazarus and Folkman (1984), cognitive appraisal mediates how a person construes an event. Appraisal i s influenced by person and s i t u a t i o n factors which c o l l e c t i v e l y form the psychological environment in which an event or encounter occurs. The judgement that an event i s s t r e s s f u l or threatening, a f f e c t s the coping strategies that are used to manage the event, which in turn, influence short, and ultimately, long term adaptational outcomes. This study explored the rela t i o n s h i p s 1 0 among the s i t u a t i o n f a c t o r of c a r e demands of persons with advanced cancer, f a m i l y c a r e g i v e r s ' c o g n i t i v e a p p r a i s a l of s t r e s s i n r e l a t i o n to c a r e demands, and the short- t e r m outcome of p s y c h o l o g i c a l w e l l - b e i n g among f a m i l y c a r e g i v e r s . Research Questions T h i s study was designed to answer the f o l l o w i n g q u e s t i o n s : 1. What are the c a r e demands of persons w i t h advanced cancer l i v i n g i n the home? 2 . What i s the l e v e l of p e r c e i v e d d i s t r e s s experienced by f a m i l y c a r e g i v e r s r e l a t i v e to c a r e demands of persons with advanced cancer l i v i n g i n the home? 3. What i s the degree of p s y c h o l o g i c a l w e l l — b e i n g among f a m i l y c a r e g i v e r s of persons with advanced cancer l i v i n g i n the home? 4. What i s the r e l a t i o n s h i p between c a r e demands of persons w i t h advanced cancer and p e r c e p t i o n s of d i s t r e s s among f a m i l y c a r e g i v e r s ? 5. What i s the r e l a t i o n s h i p between p e r c e p t i o n s of d i s t r e s s of c a r e demands and p s y c h o l o g i c a l w e l l — b e i n g among f a m i l y c a r e g i v e r s of persons with advanced cancer l i v i n g i n the home? S i g n i f i c a n c e of the Study t o Nursing Home-based c a r e has i n c r e a s i n g l y become r e c o g n i z e d as an i n v a l u a b l e a l t e r n a t i v e to h o s p i t a l i z a t i o n f o r both t e r m i n a l l y i l l p a t i e n t s and the h e a l t h c a r e system. In order f o r t h i s t o co n t i n u e t o be an i d e a l a l t e r n a t i v e , c o n s i d e r a t i o n must be 11 directed towards the needs and well-being of family caregivers. To date, l i t t l e nursing research has been done which addresses the nature and complexity of family caregiving of cancer patients. Research i n t h i s area may help to improve the qual i t y of l i f e for the caregiver, as well as the qual i t y of care the person with advanced cancer receives. Knowledge about the complexity of caregiving in terms of various care demands, and caregivers* reactions to such care demands, i s c r u c i a l to understanding the needs and c a p a b i l i t i e s of family caregivers of terminally i l l patients. As well, knowledge about family caregivers' perceptions of various components of caregiving, may provide health care professionals with valuable insight to exis t i n g or potential problems and/or learning needs facing family caregivers. The importance of documentation of the impact of caregiving on the well-being of family caregivers cannot be underestimated. Inadequate assumptions made by health care professionals regarding the well—being of caregivers may lead to i n e f f e c t i v e or inadequate intervention, undue d i s t r e s s for the caregiver, and/or needless h o s p i t a l i z a t i o n of the cancer patient. Hence, knowledge of caregiver well—being w i l l help to provide d i r e c t i o n to foster necessary support and organize services that may be needed to prevent the negative consequences of caregiving. Health care professionals responsible for hospital discharge planning and home care nurses can be instrumental in ensuring that the caregiving s i t u a t i o n i n the home i s in the best i n t e r e s t for the cancer patient and the family caregiver. Knowledge about the nature of care demands of persons with advanced cancer, family caregivers' perceptions of care demands, and the w e l l -being of family caregivers w i l l provide useful d i r e c t i o n for nurses to assess the complexity of the caregiving s i t u a t i o n which i s necessary to plan appropriate intervention to meet the needs of the patient, as well as the family caregiver. D e f i n i t i o n of Terms Caregiver A family member who i s responsible for providing and coordinating the a c t i v i t i e s of d a i l y l i v i n g required by a person with advanced cancer l i v i n g i n the home (Grobe, Ahmann & Il s t r u p , 1982). Care Demands D i f f i c u l t i e s or challenges that e x i s t i n providing at—home care to a family member with advanced cancer (Stetz, 1987). In t h i s study, care demands were measured by the Caregiver (Stressor) Inventory, Column I (Lingren, 1985). Advanced Cancer The presence of metastatic disease or tumor progression beyond the o r i g i n a l s i t e in a person whose health condition was r e l a t i v e l y stable or progressively deteriorating as a r e s u l t of the disease. The goals of medical intervention focus on p a l l i a t i v e care rather than aggressive, curative care (Stetz, 1987). Perceived Distress A family caregiver's subjective appraisal of external-environmental demands and internal psychological perceptions of real or imaginary threats, losses, or dangers (Lingren, 1985). In t h i s study, perceived d i s t r e s s was measured by the Caregiver (Stressor) Inventory, Column II (Lingren, 1985). Psychological Well-Being The presence of posit i v e emotions such as happiness, contentment, and peace of mind, and the absence of negative emotions such as fear, anxiety, and depression (Reker & Wong, 1984). In t h i s study, psychological well-being was measured by a modified Maslach Burnout Inventory which has three subscales which measure the frequency and in t e n s i t y of emotional exhaustion, depersonalization, and personal accomplishment (Maslach & Jackson, 1981). Emotional exhaustion i s defined as feelings of being emotionally overextended by one's work, depersonalization as feelings which r e f l e c t an impersonal response towards the recipient of one's care, and personal accomplishment as feelings of competence and successful achievement in one's work with people (Maslach & Jackson, 1981). Assumptions For the purposes of t h i s study, the following assumptions were made: 1. Pa r t i c i p a n t s w i l l respond honestly to the questionnaire used in the study. 2. Par t i c i p a n t s w i l l be able to i d e n t i f y and record t h e i r 14 p e r c e p t i o n s of c a r e demands a s s o c i a t e d with the f a m i l y member wit h advanced c a n c e r . 3 . P a r t i c i p a n t s who complete the mailed out q u e s t i o n n a i r e w i l l be the f a m i l y c a r e g i v e r s . L i m i t a t i o n s T h i s study has the f o l l o w i n g l i m i t a t i o n s : 1 . A convenience sample was used, and t h e r e f o r e , the sample may not be r e p r e s e n t a t i v e of the p o p u l a t i o n of c a r e g i v e r s of a d u l t s with advanced cancer l i v i n g a t home. 2. Due to time and resource c o n s t r a i n t s , a smal l sample s i z e was used which decreases the g e n e r a l i z a b i 1 i t y of the study f i n d i n g s . Overview of the T h e s i s Content T h i s t h e s i s i s composed of f i v e c h a p t e r s . In Chapter One, the background to the problem, purpose, t h e o r e t i c a l framework, r e s e a r c h q u e s t i o n s , assumptions, and l i m i t a t i o n s have been presented. In Chapter Two, a review of s e l e c t e d l i t e r a t u r e w i l l be presented under t h r e e headings: S i t u a t i o n F a c t o r of Care Demands i n Family C a r e g i v i n g ; C o g n i t i v e A p p r a i s a l of S t r e s s i n the C a r e g i v i n g Role; and A d a p t a t i o n a l Outcomes of C a r e g i v i n g . Chapter Three w i l l d e s c r i b e the r e s e a r c h methodology which i n c l u d e s a d e s c r i p t i o n of the d e s i g n , sample, instruments, e t h i c s and human r i g h t s , data c o l l e c t i o n methods, and s t a t i s t i c a l procedures. In Chapter Four, the d e s c r i p t i o n of the sample, f i n d i n g s , and a d i s c u s s i o n of the r e s u l t s w i l l be presented. 15 F i n a l l y , Chapter Five w i l l provide an overview of the study as well as the conclusions, implications for nursing practice, and recommendations for future research. 16 CHAPTER TWO Review of the L i t e r a t u r e  Introduction The l i t e r a t u r e review i s organized into three major sections which have evolved from the th e o r e t i c a l framework. The f i r s t section provides an overview of l i t e r a t u r e which pertains to the s i t u a t i o n factor of care demands associated with chronic and terminally i l l persons l i v i n g in the home s e t t i n g . The second section provides an overview of l i t e r a t u r e which pertains to caregivers' appraisal of stress i n the caregiving r o l e . The f i n a l section reviews l i t e r a t u r e that addresses adaptational outcomes of caregivers of chronic and terminally i l l persons being cared for in the community. Situation Factor of Care Demands in Family Caregiving Family members, eithe r by choice or default, often assume the primary caregiving role for the chronic and terminally i l l l i v i n g i n the community (Rose, 1976; Hinton, 1979; Northouse, 1984). Within t h i s r o l e , family members must deal with a variety of r e s p o n s i b i l i t i e s that evolve from the caregiving s i t u a t i o n . Stetz (1987) defines these r e s p o n s i b i l i t i e s as caregiving demands which involve " d i f f i c u l t i e s or challenges with respect to providing at-home care to a family member" (p. 260). Stetz (1987) distinguishes care demands into four broad categories: physical care; psychosocial demands; role demands; and f i n a n c i a l demands. S i m i l a r l y , Clark and Rakowski (1983) describe caregiving 17 r e s p o n s i b i l i t i e s as tasks associated with the management of health problems of older adults. Based on an extensive review of caregiver l i t e r a t u r e pertaining to the e l d e r l y and c h r o n i c a l l y i l l , Clark and Rakowski (1983) also categorize caregiving tasks into four broad areas: d i r e c t care of the impaired family member; (intra)personal tasks; interpersonal tasks with other family members; and interaction with the broader s o c i e t a l and health care networks. Providing physical care appears to be the dominant type of care demand reported by caregivers of the chronic and terminally i l l (Stetz, 1987; Grobe, Ahmann & Ils t r u p , 1982; Googe & Varrichio, 1981; Welsh, 1981; Clark & Rakowski, 1983; Rose, 1976; Lingren, 1985). Physical care demands are generally described i n r e l a t i o n to the management of patient symptoms or i l l n e s s c h a r a c t e r i s t i c s (Hays, 1986; Grobe, Ahmann & I l s t r u p , 1982; Pringle & Taylor, 1984) and the management of patient a c t i v i t i e s of d a i l y l i v i n g (Stetz, 1987; Clark & Rakowski, 1984; Lingren, 1985; Polansky, 1982; Sanford, 1975). The type of patient symptom d i f f e r s across caregiving s i t u a t i o n s . Physical care demands involving symptom management among terminally i l l persons most frequently involve the management of physical symptoms such as pain c o n t r o l , n u t r i t i o n a l d e f i c i t s , sleep disturbances, elimination i r r e g u l a r i t i e s , respiratory problems, and mood/emotional disturbances (Pringle & Taylor, 1984; Grobe, Ahmann fit I l s t r u p , 1982; Hays, 1986). The presence of these symptoms among cancer related 18 caregiving s i t u a t i o n s appear to be f a i r l y consistent. Pringle and Taylor (1984) found that among 40 family caregivers of terminally i l l patients being cared for at home, the caregivers were most involved in managing the patients' pain (82.5%), sleep disturbances (54%), dyspnea (25%), appetite loss (72.5%), skin breakdown (20%), mental disturbance (33%), constipation (43.5%), nausea and vomiting (30%), and incontinence (15%). The researchers found that caregivers' management of pain, loss of appetite, sleep disturbances, and constipation were most problematic for caregivers as these symptoms were most d i f f i c u l t to keep under c o n t r o l . It i s important to note that when the reasons for lack of pain control were examined, i n 9 cases i t was because the patient and/or the family caregiver chose not to follow the recommended regime for pain management (Pringle & Taylor, 1984). More s p e c i f i c d e t a i l s regarding care demands r e l a t i v e to patient symptom management were i d e n t i f i e d by Googe and V a r r i c h i o (1981). Fif t e e n caregiving s i t u a t i o n s were examined to determine the home care needs of cancer patients and t h e i r family caregivers. The prevalence of patient symptoms were s i m i l a r to those reported by Pringle and Taylor (1984). Eighty—seven percent of the cancer patients required care to manage pain, 60% required care to manage sleep problems, and 87% required care to manage elimination problems. The researchers found that 40% of the family caregivers reported that the management of these symptoms involved administering i n j e c t i o n s , a s s i s t i n g the patient 19 with e x e r c i s e s , p r o v i d i n g c a t h e t e r c a r e , p r o v i d i n g n a s o g a s t r i c tube c a r e and f e e d i n g s , a d m i n i s t e r i n g enemas, and p r o v i d i n g wound c a r e . As w e l l , 73% of the c a r e g i v e r s were r e s p o n s i b l e f o r c o n t r o l l i n g the p a t i e n t s ' s pain and s l e e p problems by a d m i n i s t e r i n g medications (Googe & V a r r i c h i o , 1981). Care demands r e l a t e d t o the management of p a t i e n t s with c h r o n i c i l l n e s s e s i n v o l v i n g v a r i o u s types of dementia a r e q u i t e d i f f e r e n t because of the nature of the i l l n e s s i n v o l v e d . Within t h i s c o n t e x t of c a r e g i v i n g , c a r e g i v e r s are mainly r e q u i r e d t o manage p s y c h o l o g i c a l symptoms t h a t i n v o l v e c o n f u s i o n , wandering, a g g r e s s i v e behaviour, and problems with communication, m o b i l i t y , and e l i m i n a t i o n i n c o n t i n e n c e (Sanford, 1975; Polansky, 1982; L i n g r e n , 1985; Mace <& Rabins, 1981). Sanford (1975) i n t e r v i e w e d 50 f a m i l y c a r e g i v e r s who had j u s t h o s p i t a l i z e d t h e i r c o g n i t i v e l y impaired f a m i l y dependent. C a r e g i v e r s were i n t e r v i e w e d f o r the purpose of examining the type of c a r e demands/problems i n v o l v e d i n t h e i r home c a r e g i v i n g s i t u a t i o n , as w e l l as the c a r e g i v e r s ' p e r c e p t i o n of these problems. Study r e s u l t s r e v e a l e d t h a t <£>2% of the c a r e g i v e r s were r e q u i r e d t o manage the dependents' s l e e p d i s t u r b a n c e , over 507. were r e q u i r e d to manage the p a t i e n t s ' f e c a l / u r i n a r y i n c o n t i n e n c e , 18% were r e q u i r e d t o a s s i s t the p a t i e n t with m o b i l i t y d e f i c i t s , and 18% were r e q u i r e d t o manage the p a t i e n t s ' symptoms i n v o l v i n g a g g r e s s i v e behaviour. P h y s i c a l c a r e demands t h a t i n v o l v e a s s i s t i n g the p a t i e n t t o carry out a c t i v i t i e s of d a i l y l i v i n g (ADD comprise a l a r g e 2 0 proportion of the caregiving r o l e . The need to a s s i s t patients with a c t i v i t i e s of d a i l y l i v i n g i s d i r e c t l y related to the presence of d e b i l i t a t i n g patient symptoms and/or the physical and psychological changes that r e s u l t from the underlying disease process (Stetz, 1987; Sexton, 1984). In a study conducted by Lingren (1985) physical care demands associated with the management of patient ADLs were categorized according to the nature of the patient's care needs that resulted from the physical or psychological impairments. With respect to physical needs, care demands evolved from the need to compensate for the patients' i n a b i l i t y to get in and out of bed, i n a b i l i t y to turn in bed, mobility needs, feeding, basic hygienic needs such as bathing, shaving, and cleaning teeth, and bowel and bladder elimination needs. The second category of care demands evolved from tasks related to the impaired patients' mental or cognitive state. Care demands involved the need to compensate for the patients' confusion, impaired recognition of s i g n i f i c a n t others, and i n a b i l i t y to communicate with others. The t h i r d category of care demands involved a s s i s t i n g the patient with special needs such as catheter care, medication administration, day and night time wandering, and preparing special food. The f i n a l category of care demands involved dealing with di s r u p t i v e patient behaviors such as fretting/worrying, complaining, night shouting, and crying. In addition to physical care demands, caregivers must also deal with a myriad of psychosocial demands. Clark and Rakowski 21 (1983) categorize these demands as intrapersonal tasks that a r i s e from concerns and d i f f i c u l t i e s experienced by the caregiver. Based on an extensive review of caregiver l i t e r a t u r e , Clark and Rakowski (1983) i d e n t i f i e d several s p e c i f i c tasks that are associated with the psychosocial demands associated with family caregiving: compensate for emotional drain from constant r e s p o n s i b i l i t y ; compensate for or recover personal time; gain knowledge about the disease/condition; avoid severe drain on physical strength/health; resolve g u i l t over negative feelings toward care-receiver; make up for or avoid r e s t r i c t i o n s on future plans; readjust personal routines; compensate for disruption of sleep; emotionally accept the l i k e l i h o o d of a progressive downward course; work through changes in the l i f e l o n g r e l a t i o n s h i p between caregiver and care-receiver; focus a locus of blame for the condition/disease; assume f i n a n c i a l costs (actual or p o t e n t i a l ) ; confront the p o s s i b i l i t y of h o s p i t a l i z a t i o n ; compensate for or avoid loss of physical and emotional intimacy; separate feelings regarding condition from feelings toward the care—receiver; resolve uncertainty about one's s k i l l s as a caregiver; release tensions/feelings towards the care-receiver; and adjust to and cope with an uncertain future (Clark & Rakowski, 1983, p.638). A d e s c r i p t i v e study by Stetz (1987) i d e n t i f i e d psychosocial care demands that confront family caregivers. S i x t y - f i v e spouse 22 caregivers of persons with advanced cancer were interviewed to explore the various demands associated with caregiving. T h i r t y -nine percent of the caregivers reported having to cope with the mental anguish and emotional turmoil of standing by and watching a loved one deteriorate and endure d e b i l i t a t i n g symptoms. Eighteen percent i d e n t i f i e d demands associated with having to provide constant attention and v i g i l a n c e to the patient, and 13% i d e n t i f i e d demands related to the d i f f i c u l t i e s of having to communicate about the cancer i l l n e s s and i t s progression to other family members and friends. F i n a l l y , 16% reported having to cope with demands associated with unmet expectations and inadequate information exchange with members of the health care system (Stetz, 1987). The experience of i l l n e s s within a family system requires ongoing in d i v i d u a l and family adjustment. When a member of a family has a serious, d e b i l i t a t i n g i l l n e s s , past family roles may no longer be appropriate for maintaining organization. As a re s u l t , family members are frequently forced to assume new roles and r e s p o n s i b i l i t i e s within and outside the family system (Edstrom «t M i l l e r , 1981; Northouse, 1984; Blues & Zerwekh, 1984; Lewandowski & Jones, 1988). Care demands associated with f a m i l i a l r o l e a l t e r a t i o n s most commonly involve learning new roles and/or losing roles previously held by the i l l family member (Blues & Zerwekh, 1984; Northouse, 1984; Sexton, 1984). Sexton (1984) found that 35% of wife caregivers of husbands s u f f e r i n g from chronic obstructive 23 pulmonary disease (COPD) reported that they were forced to assume a variety of new roles and r e s p o n s i b i l i t i e s which were previously c a r r i e d out by t h e i r husbands. Twenty-seven (59%) of the wife caregivers indicated that they had to handle indoor r e s p o n s i b i l i t i e s such as minor repairs and l i f t i n g and washing windows. As well, one-half (617.) of the caregivers indicated that they were forced to assume r e s p o n s i b i l i t y for outdoor a c t i v i t i e s such as gardening, mowing the lawn, and shoveling the snow (Sexton, 1984). Several authors concur that the major task associated with role a l t e r a t i o n s i s finding a balance between the time devoted to the i l l family member and the time devoted to the needs of other members and other day-to-day r e s p o n s i b i l i t i e s (Blues & Zerwekh, 1984; Northouse, 1984; Lewandowski & Jones, 1988; Clark & Rakowski, 1983; Stetz, 1987; Rando, 1984). Rando (1984) and Northouse (1984) point out that family caregivers may experience several problems as they attempt to find a balance between the time they devote to the i l l family member and the time they devote to growth needs of other family members, e s p e c i a l l y when the i l l n e s s continues for a long time. Clark and Rakowski (1984) i d e n t i f i e d several s p e c i f i c tasks associated with f a m i l i a l and s o c i e t a l r e s p o n s i b i l i t i e s of caregiving. These tasks were distinguished as interpersonal tasks and included the following: Designate other responsible caregivers; maintain family communication and exchange of information; balance the giving of assistance with r e s p o n s i b i l i t i e s to other family members; cope with the l o s s / r e s t r i c t i o n of family future planning; manage feel i n g s toward other family members who do not regularly help; maintain the family as an e f f e c t i v e decision-making group over a long period of time; give appropriate consideration to care-receivers' opinions and preferences; consider as a family the need for i n s t i t u t i o n a l i z a t i o n ; and in t e r a c t with medical, health, and s o c i a l service professionals (Clark & Rakowski, 1983, p. 638) . Summary Caregivers of chronic and terminally i l l persons l i v i n g i n the community are faced with a myriad of care demands and tasks. These demands can be distinguished into three broad categories: those that involve the provision of d i r e c t patient care, those that involve intrapersonal tasks for the caregiver, and those that involve interpersonal tasks for the caregiver. The prevalence and type of patient care heeds (related to symptoms and ADL d e f i c i t s ) among caregiving s i t u a t i o n s that involve chronic c o g n i t i v e l y i l l dependents and terminally i l l dependents appears to d i f f e r . Various needs assessment studies consistently reveal that caregivers of terminally i l l patients are predominantly involved in managing patient needs that are mainly physical i n nature. On the other hand, caregivers of the el d e r l y and chronic—cognitively impaired are predominantly involved i n managing patient needs that are mainly 25 psychological/mental in nature. While several l i t e r a t u r e sources e x i s t which describe the prevalence of patient care needs, few studies adequately describe the s p e c i f i c i t y of the care demands and the nature and degree of caregiver involvement i n providing the necessary care. With respect to intrapersonal and interpersonal care demands, Clark and Rakowski (1984) provide s i g n i f i c a n t l y more d e t a i l regarding the s p e c i f i c dimensions of care demands facing family caregivers. Information provided by Clark and Rakowski (1984) i s based however on an intensive review of caregiver l i t e r a t u r e , i t in i t s e l f i s not empirically based. Based on the information that does e x i s t regarding care demands that underlie family caregiving s i t u a t i o n s , i t i s consistently found that caregivers are most involved in providing physical patient care, dealing with the emotional task of providing constant care that involves the emotional anguish of standing by and watching a loved one deteriorate, dealing with multiple r o l e s , and dealing with health care professionals. Cognitive Appraisal of Stress i n Caregiving The manifestation of stress within the context of caregiving i s variably described as e i t h e r an outcome of caregiving that evolves from the caregivers' appraisal of coping effectiveness, or as an antecedent to coping which influences the mobilization of coping mechanisms which i n turn a f f e c t the outcome of caregiving. This l i t e r a t u r e review on cognitive appraisal of stre s s in caregiving focuses on the conceptualization of s t r e s s as an antecedent variable. This w i l l be approached by f i r s t presenting l i t e r a t u r e which addresses the concept of perceived st r e s s , followed by various research which documents perceived stress within the context of caregiving. The manifestation of perceived stress i s commonly described within the l i t e r a t u r e as a response to either external-environmental elements or internal—psychological perceptions of real or perceived threats or dangers to one's well-being (Mitchell & Loustau, 1981; Lingren, 1985; Murray & Zentner, 1985). This interpretation of perceived s t r e s s d i f f e r s from that of Lazarus and Folkman (1984) who state that the external-environmental elements, and the internal psychological elements of a s t r e s s f u l event cannot be viewed in i s o l a t i o n of one another. According to Lazarus and Folkman (1984) stress i s "a p a r t i c u l a r 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" (p. 19). Based on t h i s conceptualization, contextual/environmental factors are equally important as personal factors in r e l a t i o n to the manifestation of perceived s t r e s s . Perceived stress within the context of caregiving i s generally associated with negative feelings such as fear, worry, and anxiety (Blues & Zerwekh, 1984; Rando, 1984; Z a r i t , Todd & Z a r i t , 1986; Poulshock & Deimling, 1984). It i s generally acknowledged by several authors that t h i s negative response i s overwhelmingly attributed to the continual changes and losses that occur unpredictably within a patient-family caregiving s i t u a t i o n . According to Lazarus and Folkman (1984) the presence of a loss or the a n t i c i p a t i o n of a loss within a person-environment r e l a t i o n s h i p p r e c i p i t a t e s a stress appraisal which i s a c o g n i t i v e l y mediated emotional response to an event that involves a loss/harm, or the a n t i c i p a t i o n of a loss/harm (a threat). These authors further theorized that a stress appraisal i s a mediating force that influences the mobilization of coping behaviors which reduce the threat or potential harm caused by the s t r e s s f u l s i t u a t i o n (Lazarus & Folkman, 1984). Stress appraisal as defined by Lazarus and Folkman (1984) i s congruent with Poulshock and Deimling's (1984) conceptualization of perceived burden. Perceived burden i s defined by these authors as a mediating force that colours or f i l t e r s the caregivers subjective interpretation of the caregiving s i t u a t i o n . The concept of burden however, has been broadly defined and d i f f e r e n t i a l l y measured by a variety of authors. Burden i s predominantly described as synonymous with the e f f e c t s or outcomes of caregiving. The d e f i n i t i o n s range from burden as an emotional cost characterized as f e e l i n g s of embarrassment and overload (Thompson & D o l l , 1982) to s p e c i f i c changes in caregivers' day—to—day l i v e s such as disruption of d a i l y routine (Fatheringham, Skelton & Hoddinott, 1972). As well, burden i s described as the outcome of the physical, psychological, s o c i a l and f i n a n c i a l problems that a r i s e from caregiving ( Z a r i t , Todd & Z a r i t , 1986; Z a r i t , Reever & Bach-Peterson, 1980; George & 28 Gwyther, 1986). The variable d e f i n i t i o n s of burden therefore necessitate that research studies that involve the concept of burden be interpreted cautiously. Perceptions of stress vary considerably among family caregivers. What i s perceived as s t r e s s f u l to one caregiver may not be to another caregiver who i s dealing with s i m i l a r circumstances ( Z a r i t , Todd, Z a r i t , 1986; Gass & Chang, 1988). V a r i a b i l i t y i n perceptions of stress i s often described in terms varying degrees of in t e n s i t y of stress appraisals. The in t e n s i t y of stress appraisals i s i d e n t i f i e d by some authors to e x i s t on a continuum whereby high stress appraisals are distinguished from low stress appraisals (Gass & Chang, 1988; Clark & Rakowski, 1984) . Gass and Chang (1988) found that the i n t e n s i t y of stress appraisals among widows and widowers were distinguished as high or low based on the threatening nature of t h e i r perceived loss. A high stress appraisal was found to evolve from an appraisal of bereavement that was categorized as a loss with other anticipated threats (other losses). In contrast, a low stress appraisal was found to manifest when the widow(er) perceived the bereavement to involve a harmful loss that did not include other losses. It was found that a higher stress appraisal was related to higher l e v e l s of psychosocial health dysfunction among widows and widowers. The authors concluded that higher stress appraisals are related to the use of less adaptive coping behaviors (Gass & Chang, 1988). 29 Varying degrees of perceived stress are s i m i l a r l y described by Clark and Rakowski (1983). Based on t h e i r extensive review of caregiver l i t e r a t u r e , these authors found that various tasks associated with caregiving were i d e n t i f i e d by caregivers as s t r e s s f u l or e s p e c i a l l y s t r e s s f u l . Clark and Rakowski (1983) i d e n t i f y t h i s v a r i a t i o n as a "two—level hierarchy" (p. 638) which r e f l e c t s varying l e v e l s or i n t e n s i t i e s of perceived stress in re l a t i o n to various components of caregiving. Perceptions of stress among caregivers have been widely investigated i n r e l a t i o n to various c h a r a c t e r i s t i c s of the caregiving s i t u a t i o n . Perceptions of stress among caregivers in re l a t i o n to patient symptoms i s one area that has been p a r t i c u l a r l y emphasized. Several authors consistently report that caregivers of the e l d e r l y and chronic-cognitively impaired perceive patient symptoms that involve cognitive-behavioral impairments to be more s t r e s s f u l than medical physical care needs (Lingren, 1985; Sanford, 1975; Polansky, 1982, Rabins, Mace & Lucas, 1982; B a i l l i e , Norbeck & Barnes, 1988). Sanford (1975) examined perceptions of stress among caregivers of various physically and cogni t i v e l y impaired persons l i v i n g in the community. Perceptions of d i s t r e s s were described in r e l a t i o n to the caregivers' appraisal of what patient c h a r a c t e r i s t i c s were and were not considered t o l e r a b l e . Over 80X of the caregiver sample reported symptoms related to patient sleep disturbances and mobility d e f i c i t s as s t r e s s f u l , 60% reported the presence of physically aggressive behaviour as 3 0 s t r e s s f u l , and 57% reported fecal incontinence as a s t r e s s f u l component of caregiving. S p e c i f i c measures of perceived s t r e s s in r e l a t i o n to these patient c h a r a c t e r i s t i c s were not given (Sanford, 1 9 7 5 ) . Caregivers examined by Rabins et a l . ( 1 9 8 2 ) and Polansky ( 1 9 8 2 ) also perceived these patient i l l n e s s c h a r a c t e r i s t i c s to be s t r e s s f u l . Rabins et a l . ( 1 9 8 2 ) reported that caregivers of chronic—cognitively impaired dependents reported perceptions of stress in r e l a t i o n to patient symptoms that involved memory disturbances, catastrophic emotional reactions, demanding behaviour, communication impairments, and fecal/urinary incontinence. Patient i l l n e s s c h a r a c t e r i s t i c s that involve sleep disturbances such as night wandering and shouting are consistently i d e n t i f i e d as most s t r e s s f u l for caregivers. In contrast to these studies, Poulshock and Deimling ( 1 9 8 4 ) found that caregivers' of el d e r l y dependent patients perceived patient physical impairments to be equally as s t r e s s f u l as psychological/mental impairments. This study i s of p a r t i c u l a r relevance based on the researchers' e x p l i c i t i n t e r e s t in examining the mediating nature of perceived stress i n r e l a t i o n to various patient c h a r a c t e r i s t i c s and outcomes of caregiving. Within the context of t h i s study, perceptions of stress were defined as perceptions of burden and were measured i n terms of the caregivers' subjective appraisal or interpretation of s p e c i f i c patient impairments. In t h i s study 6 1 4 family caregivers of elder dependents were examined f o r the purpose of e x p l o r i n g the i n t e r r e l a t i o n s h i p s among p a t i e n t impairment, the corresponding p e r c e i v e d burden among c a r e g i v e r s , and the impact t h a t c a r e g i v i n g had on dependent-caregiver and o t h e r f a m i l y r e l a t i o n s h i p s . P e r c e p t i o n s of burden were measured i n d i r e c t r e l a t i o n s h i p to i n d i c a t o r s of the c a r e - r e c i p i e n t s ' p h y s i c a l and mental impairment. P h y s i c a l impairments were examined i n r e l a t i o n t o v a r i o u s ADLs with which the e l d e r r e q u i r e d a s s i s t a n c e : b a t h i n g , d r e s s i n g , t o i l e t i n g , m o b i l i t y , i n c o n t i n e n c e , and e a t i n g . P e r c e i v e d burden was measured a c c o r d i n g t o c a r e g i v e r s ' responses to s e v e r a l q u e s t i o n s about the t i r i n g , d i f f i c u l t , o r u p s e t t i n g nature of t a s k s r e l a t e d to managing the dependents' ADLs. C a r e g i v e r s who i n d i c a t e d t h a t these t a s k s were n e i t h e r t i r i n g , d i f f i c u l t , or u p s e t t i n g r e c e i v e d the lowest s c o r e ( 0 ) ; those who i n d i c a t e d t h a t t a s k s were t i r i n g , d i f f i c u l t , and u p s e t t i n g r e c e i v e d the h i g h e s t s c o r e ( 3 ) ; i n t e r m e d i a t e s c o r e s (1,2) were based on o t h e r combinations of responses. P e r c e i v e d burden i n r e l a t i o n t o the e l d e r s ' mental impairment was measured a c c o r d i n g to the c a r e g i v e r s ' p e r c e p t i o n s of the e l d e r s ' s o c i a b i l i t y , d i s r u p t i v e b e h a v i o r s , and c o g n i t i v e i n c a p a c i t y . C a r e g i v e r s were asked t o respond to q u e s t i o n s about the degree t o which the presence of s p e c i f i c mental impairment(s) were u p s e t t i n g or c r e a t e d a problem f o r them. These were sc o r e d as: not a t a l l (1); somewhat ( 2 ) ; o r a g r e a t d e a l ( 3 ) . R e s u l t s of the study r e v e a l e d t h a t approximately o n e — t h i r d of the c a r e g i v e r s r e p o r t e d t h a t the personal c a r e t a s k s 32 associated with the elder's physical impairment were d i f f i c u l t , t i r i n g , and upsetting. Moreover, another 80 respondents indicated that they found the tasks they performed either d i f f i c u l t , t i r i n g , or upsetting. S p e c i f i c measures of perceived stress/burden r e l a t i v e to s p e c i f i c patient impairments were not given. With respect to perceptions of stress in r e l a t i o n to dependents' mental impairments, over 40% of the caregivers reported that the elder's lack of s o c i a b i l i t y upset them somewhat or a great deal; 45% reported that the elder's disruptive behaviors upset them somewhat or a great deal, and over 20% reported that the elder's cognitive incapacity created a problem for them. Further data analysis revealed that there was a moderate empirical link between the care-recipients' mental and physical impairment c h a r a c t e r i s t i c s and the corresponding perceptions of burden among caregivers (r=.44 and r=.46 r e s p e c t i v e l y ) . Poulshock and Deimling (1984) concluded that the strength of the r e l a t i o n s h i p was not of such magnitude to suggest that patient impairment and perceived burden are synonymous. It was concluded that other factors must also contribute to perceptions of stress among family caregivers. Much less i s written about perceptions of s t r e s s in r e l a t i o n to patient symptoms/impairments among family caregivers of terminally i l l persons. Only two studies were found that reported a p o s i t i v e r e l a t i o n s h i p between patient symptoms and perceptions of caregiver s t r e s s (Hays, 1986; Wright & Dyck, 1984). Hays (1986) examined the relationships among patient symptoms, family caregiver perceptions of stress and fatigue, and patterns of hospice service u t i l i z a t i o n during the f i n a l 10 days of the terminally i l l patients' l i f e . A posi t i v e r e l a t i o n s h i p was found among the presence of patient symptoms (pain, nausea/vomiting, respiratory d e f i c i t , elimination problems, n u t r i t i o n a l d e f i c i t , and mental status d e f i c i t ) , family caregivers' perceptions of str e s s , and caregiver/patient u t i l i z a t i o n rate of health care services. Study r e s u l t s did not show s t a t i s t i c a l evidence that family caregivers' perceptions of stress were in response to any si n g l e or cumulative symptoms. However, the researchers did include comments made by the caregivers that r e f l e c t e d perceptions of e stress in r e l a t i o n to the presence of pain among care-recipients. Wright and Dyck (1984) also found a posit i v e r e l a t i o n s h i p between the presence of patient symptoms and caregiver perceptions of st r e s s . In t h i s study, caregivers of 45 hospitalized cancer patients who comprised three equal groups of patients at the diagnostic, recurrent, and terminal stages of th e i r cancer experience were interviewed. The anguish of watching a loved one suffe r from symptoms such as pain, nausea, confusion, incontinence, weight loss, and fatigue were perceived as most s t r e s s f u l by 38% of family caregivers. Study r e s u l t s also indicated that perceptions of stress r e l a t i v e to patient symptoms increased with each progressive stage of the i l l n e s s from 20% at diagnosis to 53% at the terminal stage (Wright & 34 Dyck, 1984). The manifestation of perceived stress in caregivers has also been described in r e l a t i o n to various care demands or tasks associated with caregiving. Clark and Rakowski (1983) found that perceptions of stress among caregivers of the chronic and terminally i l l were d i r e c t l y related to the following care demands/tasks: performing basic a c t i v i t i e s of d a i l y l i v i n g for the care-receiver; coping with the emotional drain from constant r e s p o n s i b i l i t y and lack of personal time; dealing with personally negative f e e l i n g s about the care-receiver and the nature of his or her i l l n e s s ; and interacting with the s o c i a l network of family and health care professionals. Clark and Rakowski (1983) stated that caregivers' frequently referred to these care demands as "especially s t r e s s f u l " (p.638). Polansky (1982) s i m i l a r l y found that caregivers perceived care demands that involved constant v i g i l a n c e to be more s t r e s s f u l than care demands that were physically strenuous. Caregivers in t h i s study reported that constant v i g i l a n c e was necessary for those patients who were disoriented and up and about a l l the time. The manifestation of perceived s t r e s s in r e l a t i o n to patient care demands i s therefore congruent with perceptions of stress that were i d e n t i f i e d in r e l a t i o n to the nature of patient impairment (day and night wandering). In most studies that examine caregiver perceptions of s t r e s s in r e l a t i o n to patient impairments/symptoms and patient care demands, i t i s often unclear i f the perception of s t r e s s i s r e l a t i v e to the appraisal of the actual patient impairment/symptom, or the appraisal of the demands/tasks required to manage the impairment. Poulshock and Deimling (1984) suggest that there i s probably a pervasive r e l a t i o n s h i p between the nature of the patient impairment/symptom and the associated care demands. These authors further postulate that i t i s the nature of t h i s c o l l e c t i v e r e l a t i o n s h i p that most l i k e l y contributes to perceptions of s t r e s s (Poulshock & Deimling, 1984) . In contrast. Holing (1986) contends that perceptions of stress manifest largely from the caregivers' subjective interpretation of the events, rather than the actual physical care demands associated with caregiving. Caregiver participants in Holing's (1986) study i d e n t i f i e d that the emotional energy required of them was o v e r a l l greater and more s t r e s s f u l than the physical energy required. Even the physical events, such as the physical d i f f i c u l t y of providing strenuous care to terminally i l l persons, were rated as requiring more emotional than physical energy (Holing, 1986). Perceptions of stress among caregivers has also been examined in r e l a t i o n to the degree of patient dependency. Goldstein, Regnery and Wellin (19B1) suggest there i s some precedent for using functional a b i l i t y as an aid to understand differences i n coping responses among caregivers. This i s based on the premise that i f a patient was dependent enough, even the hardiest of caregiver would perceive that dependency as s t r e s s f u l 36 (Lingren, 1985; Mors & H i r i s , 1984). The r e l a t i o n s h i p between perceptions of d i s t r e s s among caregivers and the level of care—recipients' dependency was supported by Lingren (1985). In t h i s study, f i f t y - o n e lay caregivers of c h r o n i c a l l y - i l l family members were studied for the purpose of measuring the stresses of caregivers and to determine i f t h e i r perceptions of stress and s o c i a l supports (antecedent variables) were related to the manifestation of anxiety and burnout (outcome v a r i a b l e s ) . The stresses of caregiving were measured by the Caregiver (Stressor) Inventory (CSI) which measured patient i l l n e s s c h a r a c t e r i s t i c s , and caregivers' perceptions of d i s t r e s s in re l a t i o n to these c h a r a c t e r i s t i c s . The State-Trait Anxiety Inventory, a modified Maslach Burnout Inventory, and the Norbeck Social Support Questionnaire were used to measure the manifestation of anxiety, burnout, and perceived s o c i a l support respectively. Data analysis revealed that varying l e v e l s of perceived s t r e s s existed among caregivers. Scores on the perceived d i s t r e s s scale ranged form 0 (4 caregivers reported no d i s t r e s s i n r e l a t i o n to any of the care—recipients' i l l n e s s c h a r a c t e r i s t i c s ) to a high of 118.96 with a mean of 44.99 and a standard deviation of 31.89. Lingren (1985) found that a moderate c o r r e l a t i o n existed between the level of the patients' dependency and the caregivers' perceptions of d i s t r e s s (r=.41 p.<.00). This c o r r e l a t i o n however was the only one in which the degree of patient dependency was r e f l e c t i v e of any measure of stress in terms of the outcome variables of anxiety and burnout. Lingren (1985) concluded that the degree of perceived stress experienced by caregivers was related to t h e i r perceptions of t h e i r s i t u a t i o n and not the degree of dependency of th e i r patients. Summary The conceptualization of perceived stress i s variably defined and d i f f e r e n t i a l l y measured within the l i t e r a t u r e . This presents a major methodological l i m i t a t i o n with respect to understanding the nature of perceived stress in caregiving. The nature of t h i s l i m i t a t i o n rests primarily on the fac t that researchers frequently describe perceptions of stress among caregivers in broad terms whereby making i t d i f f i c u l t to ascertain i f the manifestation of perceived stress i s being measured as an outcome variable, or as an antecedent var i a b l e . Researchers often do not make t h i s d i s t i n c t i o n e x p l i c i t . Perceived s t r e s s among caregivers i s consistently described in r e l a t i o n to the presence of negative feelings that manifest from a real or anticipated loss. Perceptions of st r e s s among family caregivers have been found to e x i s t in varying degrees of int e n s i t y , and are widely described i n r e l a t i o n to various c h a r a c t e r i s t i c s of caregiving. The manifestation of perceived stress among caregivers appears to vary in r e l a t i o n to the nature of care demands involved in the caregiving s i t u a t i o n . This v a r i a b i l i t y appears to e x i s t across caregiving s i t u a t i o n s that involve c h r o n i c a l l y 38 i l l and terminally i l l dependents. While several studies e x i s t which examine the r e l a t i o n s h i p among caregiver perceptions of stress, the presence of various patient symptoms, and nature of care demands involved in the caregiving s i t u a t i o n , few studies c l a r i f y the actual source of the perceived s t r e s s . Poulshock and Deimling (1984) and Lingren (1985) were the only studies found which e x p l i c i t l y examined the relationship between perceived s t r e s s and actual patient impairments. Adaptational Outcomes The adaptational outcome addressed in t h i s study was psychological well-being among family caregivers of terminally i l l persons. This adaptational outcome i s representative of a broader adaptational outcome, namely, perceived well—being. Selected l i t e r a t u r e that i s relevant to perceived well—being among caregivers of the chronic and terminally i l l w i l l be reviewed. Based on the focus of the outcomes of t h i s study, t h i s review w i l l be limited to l i t e r a t u r e that i s pertinent to the psychological dimension of perceived well-being. The experience of emotional s t r a i n i s consistently acknowledged i n the l i t e r a t u r e as a negative outcome of caregiving (Goodman, 1986; Chenoweth & Spencer, 1983; Larson, 1985; Lingren, 1985; Rose, 1976; Sanford, 1975; Polansky, 1982; Northouse, 1984; George & Gwyther, 1986; Cantor, 1983). The l i t e r a t u r e indicates that the s t r a i n of caregiving i s multidimensional in that i t can a f f e c t v i r t u a l l y a l l aspects of 39 the caregiver's l i f e to varying degrees. Caregiver s t r a i n i s frequently described i n r e l a t i o n to feeli n g s of emotional and physical exhaustion and fatigue. Factors which contribute to the manifestation of emotional and physical exhaustion in caregiving are multiple. Alterations i n sleep patterns due to the need to provide constant v i g i l a n c e to the care-recipient i s consistently i d e n t i f i e d among caregivers of both the chronic and terminally i l l as having a profound e f f e c t on the manifestation of physical and emotional feelings of exhaustion (Rose, 1976; Googe & Var r i c h i o , 1981; Sanford,1975; Polansky, 1982; Z a r i t , Todd & Z a r i t , 1986; George & Gwyther, 1986; Northouse, 1984; Welsh, 1981). Family caregivers of terminally i l l persons in Rose's (1976) study reported they were simply too worried to sleep for fear that the patient might die during the night. Sleep a l t e r a t i o n s were also attributed to the need to provide patient care during the night, or to the disturbance of hearing the patient get up during the night and walk around (Rose, 1976). In contrast, sleep d e f i c i t s among caregivers of chronic-c o g n i t i v e l y impaired are commonly described to r e s u l t from the patients' day-night reversal whereby nighttime wandering and pacing r e s u l t . Caregivers in Barnes, Raskind, Scott & Murphy's (1981) study reported that they t i e d themselves to the care-r e c i p i e n t at night so that they would awaken i f the patient arose. This constant v i g i l a n c e reportedly led to physical and emotional exhaustion (Barnes et a l . , 1981). 40 The outcome of caregiver s t r a i n with associated feelings of emotional exhaustion and fatigue are s i m i l a r l y described by Blues and Zerwekh (1984). According to these authors, physical and emotional exhaustion r e s u l t when caregivers focus a l l of t h e i r resources on providing care and support to the i l l family member, whereby putting themselves "on automatic" (p.254) for continuing t h e i r regular day-to-day a c t i v i t i e s . Blues and Zerwekh (1984) point out that t h i s works only for a short time, but when caregiving l a s t s for a long time, the inevitable outcome i s exhaustion and s t r a i n . Feelings of emotional exhaustion are also described by Goldstein et a l . (1981) in terms of "role fatigue" (p.26). According to these authors, role fatigue r e s u l t s when "...expectations and demands of d i f f e r e n t roles c o l l i d e with each other, producing c o n f l i c t and s t r a i n " (Goldstein et a l . , 1981, p.26). Blues and Zerwekh (1984) also discuss r o l e fatigue in terms of the outcome of emotional and physical exhaustion in caregiving. These authors point out that family caregivers often f e e l g u i l t y i f they don't spend every waking minute with the patient. As a r e s u l t , they may spend excessive time and energy with the patient, neglecting other family needs and r e s p o n s i b i l i t i e s . This often r e s u l t s in feelings of g u i l t and resentment and contributes to family d i s i n t e g r a t i o n . The impact of caregiving on the psychological well—being of caregivers has been extensively studied in r e l a t i o n to the morale, l i f e s a t i s f a c t i o n , and a f f e c t of caregivers of the 4 1 c h r o n i c a l l y i l l (Fengler & Goodrich, 1 9 7 9 ; Pringle, 1 9 8 2 ; George 8c Gwyther, 1 9 8 6 ; Gilhooly, 1 9 8 4 ) . Comparatively l i t t l e i s written about the impact of caregiving on the psychological w e l l -being of caregivers of the terminally i l l . Fengler and Goodrich ( 1 9 7 9 ) studied the impact of caregiving on the morale and perceived l i f e s a t i s f a c t i o n among 1 5 wife caregivers of husbands coping with a chronic i l l n e s s . Caregivers were administered l i f e s a t i s f a c t i o n scales and a se r i e s of health in d i c a t o r s at three separate time i n t e r v a l s . The study r e s u l t s indicated that caregivers reported low le v e l s of l i f e s a t i s f a c t i o n and morale compared to available national norms. The authors found that a variety of factors appeared to contribute to the wives' r e l a t i v e lack of l i f e s a t i s f a c t i o n and low morale. These factors were associated with decreased f i n a n c i a l status, multiple caregiver role r e s p o n s i b i l i t i e s , lower level s of s o c i a l support , and an altered interpersonal r e l a t i o n s h i p with spouse (Fengler & Goodrich, 1 9 7 9 ) . Similar findings were reported by Sexton and Munroe ( 1 9 8 5 ) who studied 4 6 wife caregivers of spouses who were coping with chronic obstructive pulmonary disease (CQPD), and 30 wives whose husbands did not have a chronic i l l n e s s (control group). The impact of caregiving was measured using an I l l n e s s Impact form, a Subjective Stress scale and a L i f e S a t i s f a c t i o n Index. Findings revealed that wife caregivers of spouses' with COPD reported higher subjective s t r e s s and lower l i f e s a t i s f a c t i o n than the control group. The authors did not make e x p l i c i t i f the 42 measurement of subjective stress was that of an antecedent variable or an outcome vari a b l e . In addition to morale and l i f e s a t i s f a c t i o n indices, the impact of caregiving on psychological well-being has also been examined in r e l a t i o n to the experience of depression and anxiety among caregivers. According to Mace and Rabins (1981), family caregivers of the chr o n i c a l l y i l l "often f e e l sad, depressed, discouraged, or low, day a f t e r day, week a f t e r week. Sometimes they f e e l apathetic or l i s t l e s s . [Caregivers! may also f e e l anxious, nervous, or i r r i t a b l e . Sometimes they don't have much appetite and have trouble sleeping at night" (p.239). In a study conducted by Sanford (1975), 527. of the family caregivers reported symptoms of depression and anxiety as a res u l t of providing ongoing care to the i r c h r o n i c a l l y i l l dependent. Despite the presence of these symptoms, Sanford (1975) found that the tolerance of these fe e l i n g s was r e l a t i v e l y high among caregivers. Variations i n feelings of depression among 49 family caregivers of dementia patients were also found by F i t t i n g , Rabins, Lucas & Eastham (1986). The Minnesota Multiphasic Personality Inventory (MMPI) was used to measure caregivers' depression and behaviors i n d i c a t i v e of psychopathic deviation. Study r e s u l t s revealed that wife caregivers experienced s i g n i f i c a n t l y high levels of depression compared to husband caregivers. The MMPI also i d e n t i f i e d measures of discouragement and hopelessness of the demoralized state among the caregiver 43 pa r t i c i p a n t s . Several women caregivers interviewed i n t h i s study described t h i s state of demoralization: I f e e l as i f I'm against a blank wall and no way out...there i s no solution I just have to cope...I was in a deep depression... I didn't know what was happening... I f e l t t i r e d and had trouble sleeping...I c r i e d a l o t . . . I f e l t so unsure of the future. ( F i t t i n g et a l . , 1986 p.250). In comparison, Niederehe et a l . (1983) found measures of depression among family caregivers to be much lower than that described by F i t t i n g et a l . (1986). Niederehe et a l . (1983) compared the mental and physical health of 34 family caregivers of demented e l d e r l y r e l a t i v e s to a sample of 16 noncaregivers (control group). Based on the r e s u l t s of the CES Depression Scale and Hamilton Depression Scale, caregivers showed somewhat more depressive symptoms than the controls, but usually not enough to warrant a c l i n i c a l diagnosis of depression. The researchers concluded that t h i s outcome may be based on the p o s s i b i l i t y that caregivers deny t h e i r emotions, or that the s i t u a t i o n a l demands of caregiving requires that caregivers keep thei r resources mobilized for the d a i l y care of the r e l a t i v e and not to become absorbed with t h e i r own troubled emotions (Niederehe et a l . , 1983). The impact of caregiving on the psychological well-being of caregivers i s s i m i l a r l y described i n r e l a t i o n to the manifestation of "burnout" among family caregivers (Ekberg et a l . , 1986; Lingren, 1985). Burnout i s "a syndrome of emotional 44 exhaustion, depersonalization and reduced personal accomplishment that can r e s u l t from the chronic emotional s t r a i n of dealing extensively with other people who have troubles or problems" (Maslach & Zimbardo, 1981). According to Maslach and Jackson (1981) si t u a t i o n s where people have strong emotional feelings are vulnerable to burnout based on the chronic emotional stress that i s involved. In a study conducted by Ekberg et a l . (1986), the emotional and physical symptoms of burnout were studied in 30 married couples where one partner had a chronic i l l n e s s . S i g n i f i c a n t differences were found between the spouse caregiver and the chr o n i c a l l y i l l patient when l i f e s a t i s f a c t i o n scares were obtained. Sixty percent of the caregiver group compared to only 10% of the patient group stated that they got down in the dumps too often. Only 37% of the caregiver group stated that these were the best years of t h e i r l i f e compared to 53% of the patient group. Study findings also revealed that 30% of the caregivers experienced f e e l i n g s of depression, 30% experienced feelings of uselessness, and 27% experienced f e e l i n g that no one understood them. Somatic symptoms were also reported by the caregivers. Symptoms included headache, shortness of breath, and trouble with the i r heart pounding. The most s i g n i f i c a n t finding was the fe e l i n g of loneliness expressed by 60% of the spouse participants (Ekberg et a l . , 1986). Lingren (1985) also found manifestations of burnout among family caregivers of c h r o n i c a l l y i l l persons. The presence of 45 burnout i n t h i s study was measured using a revised form of the Maslach Burnout Inventory (MBI) which measures feelings of depersonalization, personal accomplishment, and emotional exhaustion. Scores on the revised MBI were then compared to normative data established by the authors of the MBI. Data analysis revealed that the manifestation of burnout in caregivers was the strongest in terms of the i n t e n s i t y and frequency of emotional exhaustion. Caregiver subjects had scores in these two areas comparable to moderate le v e l s of burnout in the normative population. Caregivers who had high emotional exhaustion also manifested s i g n i f i c a n t l y higher scores of State and T r a i t anxiety. Other factors that correlated to Emotional Exhaustion Frequency were the outcome measures of anxiety/depression (r=.35, p_<.01), length of time caregiving (r=.-34 p_<.OOS), and length of patients' i l l n e s s (r=.-36 p_<.01). Another important finding i n Lingren's (1985) study was a s i g n i f i c a n t r e l a t i o n s h i p between caregiver perceptions of stres s and the outcome of emotional exhaustion. Emotional Exhaustion Frequency correlated to caregivers' perceptions of d i s t r e s s (r=.54 p_<-00). Lingren (1985) concluded that family caregiving i s a s t r e s s f u l experience whereby caregivers provide care at an emotional cost to themselves. Furthermore, the emotional stres s and exhaustion that caregivers experience i s a potential threat to t h e i r health and well-being, as well as that of t h e i r i l l family member (Lingren, 1985). A s i g n i f i c a n t r e l a t i o n s h i p between perceptions of stres s and 46 psychological well-being was also found by B a i l l i e , Norbeck and Barnes (1988). In t h i s study, the e f f e c t s of perceived s t r e s s and s o c i a l support and t h e i r i nteraction with the psychological well-being of 87 family caregivers of impaired e l d e r l y were examined. Perceived stress was measured in r e l a t i o n to the caregivers' subjective interpretation of the elders': behaviour, communication a b i l i t y , emotional/mental state, relationship with the caregiver; time demands in caregiving; physical or task aspects of caregiving; e f f e c t s on other family members; and f i n a n c i a l considerations. Each item was rated on a 5-point scale ranging from no stress to high s t r e s s . Data analysis revealed that perceived s t r e s s accounted for 32% of the variance in psychological d i s t r e s s or depression (p_<.001). However when c h a r a c t e r i s t i c s of the caregiving s i t u a t i o n were included in the data analysis model, the e f f e c t s of perceived stress were found to be spurious. The revised data analysis models accounted for 44% to 48% of the variance i n psychological d i s t r e s s or depression, (p_<.00) and included years of caregiving and mental impairment of the elder instead of perceived s t r e s s . The authors concluded that caregivers who are caring for a mentally impaired elder, who have been providing care for an extended time, and who have low s o c i a l support are at high r i s k for psychological d i s t r e s s or depression ( B a i l l i e et a l . , 1988). Summary The impact of caregiving on the psychological well-being of 47 caregivers i s described consistently in r e l a t i o n to the outcome of caregiver s t r a i n . The demand for caregivers to provide constant patient surveillance with resultant sleep deficiency, s i g n i f i c a n t l y contributes to the outcome of exhaustion, fatigue, and s t r a i n . There i s consistent support within the l i t e r a t u r e that suggests that the demands and stresses of caregiving are related to psychological feelings of depression and demoralization among family caregivers. Only two studies were found that systematically examined the r e l a t i o n s h i p between perceptions of st r e s s , as an antecedent variable, and psychological well—being among caregivers. There i s a d e f i n i t e lack of empirical research that e x p l i c i t l y examines the impact of caregiver s t r e s s , as an antecedent variable, on the psychological well-being of family caregivers. As well, in comparison to l i t e r a t u r e which addresses outcomes of caregiving of the e l d e r l y and chronic—cognitively impaired, there i s r e l a t i v e l y l i t t l e research that examines the outcomes of caregiving among caregivers of the terminally i l l . Summary of the Literature Review The l i t e r a t u r e review pertaining to family-centered caregiving reveals a number of areas requiring further research. The nature of care demands which confront family caregivers have been found to e x i s t i n d i s t i n c t dimensions: physical care demands, intrapersonal demands, and interpersonal demands. Broad categories, rather than s p e c i f i c descriptions, of care demands associated with caregiving are generally i d e n t i f i e d and very 48 l i t t l e d e t a i l i s offered that describes the degree of caregiver involvement i n managing the care demands. Perceived stress i s discussed within the l i t e r a t u r e as either an outcome variable, or an antecedent var i a b l e . While the concept of perceived stress i s commonly addressed within the l i t e r a t u r e , researchers often f a i l to e x p l i c i t l y i d e n t i f y the precise nature of i t s r e l a t i o n s h i p to caregiving. Very few studies were found which e x p l i c i t l y state the intention to examine stress as an antecedent variable within the context of caregiving. Further investigation of the nature of perceived stre s s as an antecedent variable in caregiving i s needed. Common findings among research studies provides support for the r e l a t i o n s h i p of perceived stress and the presence of various patient symptoms and care demands associated with caregiving. The majority of t h i s l i t e r a t u r e pertains to caregiving s i t u a t i o n s that involve e l d e r l y and chronic—cognitively impaired dependents. In comparison, there i s a d e f i n i t e paucity of systematic investigation of these variables among caregivers of terminally i l l dependents. The impact of caregiving on caregiver psychological w e l l -being i s well documented. The outcome of caregiver s t r a i n i s a pervasive theme in almost a l l l i t e r a t u r e that pertains to family caregiving. Caregiver s t r a i n i s consistently described i n r e l a t i o n to f e e l i n g s of emotional exhaustion and fatigue. Support also e x i s t s for the frequent outcome of depression and feelings of demoralization among family caregivers. As well, 49 support e x i s t s for the relat i o n s h i p between caregivers' perceptions of stress and depression and other negative outcomes of caregiving such as burnout. The nature of these outcomes among caregivers of terminally i l l persons however, has not been systematically addressed. Based on the i d e n t i f i c a t i o n of several gaps within the l i t e r a t u r e , t h i s study was designed to explore the following: the presence and nature of s p e c i f i c care demands facing caregivers of terminally i l l persons; perceptions of d i s t r e s s in r e l a t i o n to various care demands; the impact of caregiving on the psychological well-being of family caregivers; the re l a t i o n s h i p between patient care demands and caregiver perceptions of d i s t r e s s ; and f i n a l l y the relat i o n s h i p between perceptions of di s t r e s s and psychological well-being among family caregivers of terminally i l l persons. 50 CHAPTER THREE Methodology Introduction This chapter describes the research design, sampling procedure, data c o l l e c t i o n instruments, data c o l l e c t i o n procedures, e t h i c a l considerations, and the s t a t i s t i c a l procedures used i n data analysis. Research Design A descriptive c o r r e l a t i o n a l design was used i n t h i s study. This type of design allowed the researcher to describe both the nature of, and relationships among, care demands of persons with advanced cancer, caregiver perceptions of d i s t r e s s , and the psychological well—being among family caregivers of persons with advanced cancer l i v i n g in the home se t t i n g . Sampling Procedure O r i g i n a l l y , a convenience sample of 84 family caregivers was to be selected for t h i s study. A l l subjects were to be given the option of having the study questionnaire mailed to them, or to be v i s i t e d by the researcher for the purpose of administering the questionnaire. This option was incorporated as a means to avoid subjecting participants who wanted to p a r t i c i p a t e i n the study to the added burden of having to meet with yet another stranger. The recruitment of participants for t h i s study was car r i e d out by formally presenting the nature and purpose of the study to Home Care nurses at the Vancouver Health Department and agency personnel at the White Rock Hospice Society. Written information was d i s t r i b u t e d , and nurses and agency personnel were asked to f i r s t i d e n t i f y potential caregiver participants who met the study c r i t e r i a , and second, to contact these caregivers, describe the study to them, and ascertain i f they would be w i l l i n g to be contacted by the researcher. This approach was based on conditions set by the r e c r u i t i n g agencies. Subjects selected for inclusion i n the study met the following c r i t e r i a : 1. The caregiver i s a family member of an adult person with advanced cancer. 2. The caregiver has provided care for the person with cancer for a minimum of one month. 3. Death of the person with advanced cancer i s not expected to occur within one month. 4. The caregiver l i v e s in or near Vancouver. 5. The caregiver i s able to read, write, and speak English. 6. The caregiver and the family member who i s the rec i p i e n t of the caregiver's care gives informed consent. A t o t a l of 48 family caregivers who liv e d in the Lower Mainland of B r i t i s h Columbia were contacted. Four participants refused to p a r t i c i p a t e i n the study due to sudden, deteriorating changes happening with t h e i r terminally i l l c are-recipient. A to t a l of 23 questionnaires were mailed out, and 21 were administered d i r e c t l y by the researcher. Of the mailed out 52 questionnaires, 4 were not returned due to the subsequent death of the care-recipient. Of the mailed questionnaires that were returned, the majority were thoroughly completed with the exception of a minor number of questions that were not answered by only a few respondents. The f i n a l sample obtained consisted of the following: 21 family caregivers who were v i s i t e d by the researcher for the purpose of administering the questionnaire, and 19 family caregivers who were mailed the questionnaire. Information obtained from family caregivers who participated by interview were compared to determine the f e a s i b i l i t y of pooling the participants into one group of family caregivers. The r e s u l t s of t h i s pooled analysis w i l l be presented in Chapter Four. Data C o l l e c t i o n Instruments Three data c o l l e c t i o n instruments were u t i l i z e d i n t h i s study. The Caregiver(Stressor) Inventory (CSI) (Lingren, 1985) was used to measure both the care demands of persons with advanced cancer and caregivers' perceptions of stress in r e l a t i o n to these care demands. A revised version of the Maslach Burnout Inventory (MBI) (Maslach & Jackson, 1981) was used to measure the impact of caregiving on the psychological well—being of family caregivers. F i n a l l y , an Information Sheet was used to c o l l e c t demographic data about the caregiver and the care-recipient. Caregiver (Stressor) Inventory (CSI) The o r i g i n a l Caregiver (Stressor) Inventory (CSI) (Lingren, 1985) i s composed of 46 items which pertain to functional 53 a b i l i t i e s of c h r o n i c a l l y i l l persons (see Appendix A). Completion of the CSI requires that respondents rate each of the 46 items twice. F i r s t , respondents rate on a scale of 0 to 3, the demand for patient care i n r e l a t i o n to various areas of patient functional dependency (Column I ) . This provides a measure of the o v e r a l l demand for patient care i n terms of the patient dependency on the caregiver. Second, respondents rate on a scale of 0 to 5, how d i s t r e s s f u l the various care demands are for them (Column I I ) . This provides a measure of the caregivers' overall perceptions of d i s t r e s s i n r e l a t i o n to the o v e r a l l demands for patient care, as well as a measure of d i s t r e s s that i s r e l a t i v e to s p e c i f i c care demands associated with caregiving. The CSI was developed by Lingren (1985) for the purpose of completing a study which examined the relationships among perceived stress, anxiety, burnout, and s o c i a l support among lay caregivers of adult c h r o n i c a l l y i l l family members. The content of the items contained in the CSI pertain to the functional a b i l i t i e s of c h r o n i c a l l y i l l persons and were derived from a review of various A c t i v i t y of Daily Living scales, interviews with i n d i v i d u a l s providing care to c h r o n i c a l l y i l l persons, as well as the author's personal nursing experience in caring for c h r o n i c a l l y i l l patients (Lingren, 1985). In order to achieve a comprehensive measure of the functional a b i l i t i e s of c h r o n i c a l l y i l l persons, a broad range of items were chosen which were r e f l e c t i v e of care needs/demands pertaining to ambulation, a c t i v i t y tolerance, hygiene, dressing, feeding, bowel and bladder 54 cont r o l , sensory d e f i c i t s , sleeping and night-time habits, and special treatment needs. Each item included i n the CSI was assigned a numerical rating that was representative of the degree of dependency. Content v a l i d i t y of the CSI was established by Lingren (1985) by having three PhD nurse researchers p i l o t test the instrument with c h r o n i c a l l y i l l patients. As well, Lingren (1985) consulted three gerontological nurse s p e c i a l i s t s who reviewed the tool and made minor revisions. Construct v a l i d i t y of the CSI was established through the use of the "known groups technique" ( P o l i t & Hungler, 1983). The CSI was administered to three types of patients known by Lingren to have varying degrees of physical and behavioral dependency. Total scores r e l a t i n g to degree of dependency, were found to accurately r e f l e c t the differences among the patients, hence r e f l e c t i n g high construct v a l i d i t y of the CSI. Test-retest r e l i a b i l i t y was established by Lingren by having nine caregiver subjects do the en t i r e CSI a second time a f t e r one week from t h e i r i n i t i a l r a t i n g . Wilcoxon Matched-Pairs Ranked Sign Test was used to compare the two ratings and no s i g n i f i c a n t differences were found (Lingren, 1985). A factor analysis of the study r e s u l t s was completed by Lingren. Ratings from Column I (demands for patient care/dependency) factored into 5 meaningful groups: (1) physical needs, (2) patient mental/cognitive state, (3) special need items pertaining to patient care, (4) disr u p t i v e behaviors, and (5) miscellaneous care needs (such as v i s i t s to the doctor). Caregiver d i s t r e s s r e l a t i v e to patient care demands factored into 4 meaningful groups. These groups pertained to caregiver perceptions of d i s t r e s s r e l a t i n g to ( i ) physical care needs, (2) patient cognitive state, (3) patient behaviors that are emotional/disturbing, and (4) personal hygiene needs of the patient. The CSI i s a recently developed tool which has only been tested by Lingren (1985). Despite i t s lack of empirical t e s t i n g , the CSI was judged to be applicable to the purpose of t h i s study. Several a l t e r n a t i v e instruments were sc r u t i n i z e d , however none could be found which provided a detailed assessment of s p e c i f i c care needs which r e f l e c t varying l e v e l s of patient dependency. A modified version of the CSI was used for t h i s study. Fourteen items were eliminated from the o r i g i n a l 46—item version as these items were not relevant to patients suffering from terminal cancer. In t h i s study, the internal consistency r e l i a b i l i t y alpha of the CSI, Column I and Column II were 0.83 and 0.93 respectively. Maslach Burnout Inventory (MBI) Psychological well—being of family caregivers of persons with advanced cancer was measured using the Maslach Burnout Inventory (MBI) (see Appendix B). The MBI i s composed of 22 items that measure three aspects of burnout that r e s u l t from overtension and unresolved anxiety (Maslach & Zimbardo, 1981). The development of the MBI was based on the r e s u l t s of exploratory research and an extensive review of established scales which focused on the measurement of personal feelings and attitudes of people who, according to previous research, were po t e n t i a l l y vulnerable to burnout. Based on a se r i e s of factor analytic studies, three separate subscales which comprised the concepts of burnout were i d e n t i f i e d . These scales are: the Emotional Exhaustion subscale, the Depersonalization subscale, and the Personal Accomplishment subscale. The Emotional Exhaustion subscale consists of 9 items that describe fe e l i n g s of being emotionally overextended and exhausted by one's work. The Depersonalization subscale consists of 5 items that describe an unfeeling and impersonal response towards re c i p i e n t s of one's care. The Personal Accomplishment subscale contains 8 items that describe feelings of competence and successful achievement in one's work with people (Maslach & Jackson, 1981). Completion of the MBI required that respondents rate the items twice. In the f i r s t rating respondents were required to rate, on a 6-point l i k e r t scale, the frequency with which s p e c i f i c emotions that related to emotional exhaustion, depersonalization, and personal accomplishment occurred. In the second ra t i n g , respondents were required to rate, on a 7—point l i k e r t scale, the in t e n s i t y in which the emotions were experienced. Results of the MBI therefore indicate the presence of low, moderate, or high levels of burnout. A high level of burnout i s re f l e c t e d by high frequency and i n t e n s i t y scores on the Emotional Exhaustion and Depersonalization subscales and in low scores on the Personal Accomplishment subscale. A moderate 57 level of burnout i s r e f l e c t e d by moderate frequency and i n t e n s i t y scores on the three subscales, and a low level of burnout i s r e f l e c t e d by low frequency and i n t e n s i t y scores on the Emotional Exhaustion and Depersonalization subscales and i n high scores on the Personal Accomplishment subscale. Internal consistency r e l i a b i l i t y was established using over one thousand subjects for frequency and intensity measurements. Subjects were from varied professions involved i n the provision of care and assistance to others. In terms of the frequency scale, Cronbach's Alpha c o e f f i c i e n t s were 0.90 for the Emotional Exhaustion scale, 0.79 for the Depersonalization scale, and 0.71 for the Personal Accomplishment scale. The Cronbach Alpha c o e f f i c i e n t s for the i n t e n s i t y scale were 0.87 for the Emotional Exhaustion scale, 0.76 for the Depersonalization scale, and 0.73 for the Personal Accomplishment scale (Maslach & Jackson, 1981). Construct v a l i d a t i o n of the MBI has been demonstrated in a variety of studies where the MBI was used to confirm hypothetical relationships between experienced burnout and personal reactions. In one study, Maslach and Pines (1979) used the MBI to test a hypothetical r e l a t i o n s h i p between various job c h a r a c t e r i s t i c s and experienced burnout. Based on the findings from t h i s study, i t was predicted that the greater the i n t e n s i t y or degree of involvement with c l i e n t s the higher the burnout scores on the MBI. This pattern was demonstrated i n a study c i t e d by Maslach and Jackson (1981) where 43 physicians in a C a l i f o r n i a health maintenance organization were studied. Those physicians who 58 spent a l l or most of t h e i r working time in d i r e c t contact with patients scored high on Emotional Exhaustion and Depersonalization. Data on t e s t - r e t e s t r e l i a b i l i t y of the MBI were obtained from a sample of graduate students in s o c i a l welfare and administrators in a health agency (N=53). Based on a 2-4 week i n t e r v a l , the t e s t - r e t e s t r e l i a b i l i t y c o e f f i c i e n t s for the subscales were the following: 0.82 (frequency) and 0.53 (intensity) for Emotional Exhaustion, 0.60 (frequency) and 0.69 (intensity) for Depersonalization, and 0.80 (frequency) and 0.68 (intensity) for Personal Accomplishment (Maslach & Jackson, 1981). The MBI has been used in a modified form in several studies. Iwanicki and Schwab (1981) modified the MBI to meet the needs of teachers, and found that the MBI measured the same basic constructs as i d e n t i f i e d by Maslach and Jackson (1981). Lingren (1985) also modified the MBI for the purpose of applying i t to lay caregivers of c h r o n i c a l l y i l l persons. For the purpose of the present study, the MBI was modified by deleting 1 item which was f e l t to be inappropriate for caregivers of terminally i l l patients. As well, the MBI was modified by using the word family member to refer to the rec i p i e n t of care rather than the term c l i e n t which i s used on the o r i g i n a l MBI. In t h i s study, the int e r n a l consistency r e l i a b i l i t y alphas for the burnout subscales were as follows: Emotional Exhaustion, 59 Frequency and Intensity were 0.91 and 0.90 respectively; Depersonalization, Frequency and Intensity were 0.66 and 0.59 respectively; and Personal Accomplishment, Frequency and Intensity were 0.89 and 0.83 respectively. Information Sheet The Information Sheet used i n the present study was designed to gather sociodemographic data about the family caregivers as well as the care-recipients, (see Appendix C). Items included information about the caregivers' age, sex, marital status, caregiving background, and health status. Information about the care-recipients included age, sex, and length and type of i l l n e s s . Data C o l l e c t i o n Procedure Participants for t h i s study were obtained through the Vancouver Health Department Home Care Program and the White Rock Hospice Society. Names of participants who had been approached by t h e i r respective professional health care worker and who had agreed to be contacted by the researcher were contacted by telephone. Further information about the study was provided, and the preferred mode of caregiver p a r t i c i p a t i o n was ascertained. Caregivers who preferred to pa r t i c i p a t e by mail were immediately mailed a questionnaire packet. Each packet contained an Information Letter (see Appendix D), the three—part questionnaire, and a return stamped envelope with the researcher's address on i t . The Information Letter contained an explanation of the study and the nature of the respondents' p a r t i c i p a t i o n , as well as a statement indicating that return of the questionnaire indicated t h e i r consent to pa r t i c i p a t e in the study. In addition, the Information Letter contained information that explained what was to be done with the information that they provided on the questionnaire. F i n a l l y , the researcher's name and telephone number were included in the l e t t e r and respondents were encouraged to contact the researcher should they have any questions or concerns about the study. E t h i c a l Considerations Prior to conducting the study, permission was obtained from the University of B r i t i s h Columbia Behavioral Sciences Screening Committee for Research and Other Studies Involving Human Subjects. As well, permission was obtained from the Vancouver Health Department Research Committee and the White Rock Hospice Society Board of Directors. To ensure that e t h i c a l and moral r i g h t s of a l l prospective participants were respected, a variety of measures were taken. A l l of the potential participants received a written description of the study and the nature of t h e i r p a r t i c i p a t i o n . A l l participants were e x p l i c i t l y informed that they were not obligated to p a r t i c i p a t e in the study and could withdraw or refuse to answer any questions without any e f f e c t to t h e i r own, as well as t h e i r dependent family member's future medical or nursing care. F i n a l l y , measures to guarantee participant c o n f i d e n t i a l i t y were explained. This included an explanation that raw data without any i d e n t i f y i n g information would be added 61 to a larger pool of data that was being gathered by a nurse researcher who was studying family caregiving. A l l questionnaires were numbered and coded to ensure complete c o n f i d e n t i a l i t y . Data Analysis A l l raw data from the questionnaires were coded, entered into a computer f i l e , and analyzed using the S t a t i s t i c a l Program of the Social Sciences (SPSSX) computer program. Descriptive and nonparametric s t a t i s t i c s were u t i l i z e d to analyze the data. Nonparametric s t a t i s t i c s were used because the assumption of normality could not be met based on the small, convenience sample used i n t h i s study ( P o l i t & Hungler, 1983). Spearman's rho c o r r e l a t i o n c o e f f i c i e n t was used to determine whether a r e l a t i o n s h i p existed among care demands of adults with advanced cancer, family caregivers' perceptions of d i s t r e s s , and the psychological well—being of family caregivers. 62 CHAPTER FOUR Presentation and Discussion of Results Introduction This chapter i s comprised of three sections. The f i r s t section provides a detailed description of the demographic c h a r a c t e r i s t i c s of the sample. The second section presents the study findings, and the t h i r d section provides a discussion of the study findings. C h a r a c t e r i s t i c s of the Sample Since family caregiving may be a s t r e s s f u l experience, measures were taken to minimize the imposition of further stress for the caregiver pa r t i c i p a n t s . Family caregivers were given the option to either have the questionnaire mailed to them or be v i s i t e d by the researcher for the purpose of d i r e c t l y administering the questionnaire. Nineteen family caregivers opted to p a r t i c i p a t e by having the questionnaire mailed to them, and twenty—one preferred to meet d i r e c t l y with the researcher. Caregivers who participated by mail and caregivers who were v i s i t e d by the researcher were compared to determine whether data from the two groups could be pooled. Using the T-Test, the two groups were compared in terms of t h e i r responses to the various instruments. No s i g n i f i c a n t differences were found and the two groups were subsequently pooled to form one group of 40 family caregivers. Demographic C h a r a c t e r i s t i c s of the Sample Demographic data were co l l e c t e d about the caregiver as well 63 as the care-recipients who w i l l be referred to as cancer patients. Data c o l l e c t e d about the caregiver sample were age, sex, r e l a t i o n s h i p to cancer patient, current employment status, and past caregiving experience. Data c o l l e c t e d about the cancer patients were age, sex, medical diagnosis, length of i l l n e s s , and other people involved in care management. Family Caregivers The caregiver sample was comprised of 70% (N=28) females and 30% (N=12) males. Age of the caregivers ranged from 29 to 80 (M=53.4) years (see Table 1). Employment c h a r a c t e r i s t i c s revealed that 13 caregivers (32%) worked f u l l - t i m e outside the home, 5 caregivers (12.5%) worked on a part-time basis, 9 caregivers (22.5%) were r e t i r e d , and 13 caregivers (32.5%) were f u l l - t i m e housewives. The relationships of the caregivers to the care-recipients were as follows: 12 were wives (30%), 6 were husbands (15%), 9 were daughters (22.5%), 4 were sons (10%), 1 was a granddaughter (2.5%), 3 were sisters-in—law (7.5%), 1 was a brother—in-law (2.5%), and 2 were daughters-in-law (5%). The length of time caregivers had been caring for the care-r e c i p i e n t ranged from 1 month to 3.5 years (M=13.6, SD=13). Seventeen percent had been caregiving for 1 month, 25% had been caregiving for 6 months, 25% had been caregiving for 12 months, and 27.5% had been caregiving for more than 1 year (see Table I I ) . The length of time caregivers spent providing care per day ranged from 1 hour (25%) to 24 hours (5%) with a mean time of 8.38 hours and a standard deviation of 6.7 (see Table I I I ) . 64 Table I Age of Family Caregivers Age Frequency ( f ) Percent (7.) 25-29 4 10.0 30-34 6 15.0 35-39 4 10.0 40-44 3 7.5 45-49 2 5.0 55-59 3 7.5 60-64 1 2.5 65-69 6 15.0 70-74 6 15.0 75-80 5 12.5 Total 40 1O0.0 Table II Length of Time in Caregiver Role Length (months) Freguency ( f ) Percent (%) 1-5 7 17.5 6-10 12 30.0 11-15 IO 25.0 16-20 2 5.0 21-25 3 7.5 26-30 2 5.0 31-35 0 0 36-40 2 5.0 42-45 2 5.0 Total 40 100.0 65 Table I I I Hours Per Day Spent Caregiving Hours Frequency Percent 1-3 14 35.0 4-6 5 12.5 7-9 1 2.5 10-12 9 22.5 13-15 1 2.5 16-18 8 20.0 19+ 2 5.0 Total 40 100.0 The majority of caregivers (55%) reported having no medical or health problems. The health/medical problems most frequently reported by caregivers were heart trouble (N=5) and back strain/pain (N=4). Other health/medical problems reported by one or two of the caregivers included the following: a r t h r i t i s , hypertension, p o l i o , depression, and cataracts. Care—recipient (Cancer Patients) Age of the cancer patients ranged from 40 to 90 years (M=69, SD=11.4). Forty-two percent (N=17) were male and 58% percent (N=23) were female. A l l cancer patients were i n the advanced phase of the cancer i l l n e s s whereby no further aggressive, curative therapies were being received. Among the cancer patients the primary s i t e of t h e i r cancer was as follows: 17% (N=7) lung, 127. (N=5) breast, 77. (N=3) lymphatic system, 5% (N=2) melanoma, 57. (N=2) digestive t r a c t , 157. (N=6) bowel, 27. (N=l) bladder, 5% (N=2) bone, and 30% (N=12) reported several cancer s i t e s . The length of time which cancer patients had been i l l ranged from 1 month to 60 months (M=18.5, SD=14.2) (see Table IV). F i n a l l y , a l l cancer patients and caregivers were receiving regular v i s i t s by a Home Care nurse and 90% of the sample were receiving homemaking services from community support agencies. Table IV Length of Time Cancer Patients Have Been Coping with Cancer Months Frequency Percent 1-6 8 20.0 7-12 14 35.0 13-18 4 lO.O 19-24 7 17.5 25-30 1 2.5 31-36 3 7.5 37-42 0 0 43-48 1 2.5 49-54 0 0 55-60 2 5.0 Total 40 100.0 Findings The findings of t h i s research w i l l be presented i n r e l a t i o n to each of the research questions underlying t h i s study. The relationships among care demands, caregiver perceptions of di s t r e s s , and the outcome of psychological well—being were examined using the Spearman's rank c o r r e l a t i o n c o e f f i c i e n t . Research Question Is What are the Care Demands of Persons with  Advanced Cancer Li v i n g in the Home Setting? The demand for t o t a l patient care as measured by caregivers* ratings of various areas of patient dependency, ranged from a low of 1 to a high of 49 (see Table V). The mean score was 23.67 and standard deviation 12.36. The majority of the cancer patients were minimally dependent on t h e i r caregiver with 75% having scores of 30 or less and only a small percentage of cancer patients were found to be s l i g h t l y more dependent than the majority. A l l caregivers had scores of less than 50 in r e l a t i o n to the maximum possible score which was 96.0. Family caregivers' ratings of the demand for care i n r e l a t i o n to s p e c i f i c areas of patient dependency are re f l e c t e d on Table VI. Research Question 2: What i s the Level of Perceived Distress  Experienced by Family Caregivers Relative to Care Demands of  Persons with Advanced Cancer? Family caregivers' perceptions of t o t a l d i s t r e s s , as measured by the caregivers' ratings of perceived d i s t r e s s r e l a t i v e to patient care demands, ranged from a low of 0 ( 3 caregivers reported no perceived d i s t r e s s in r e l a t i o n to the care demands) to a high of 115 (see Table VII). The mean score was 23.80 and the standard deviation was 23.85. Total scores ref l e c t e d that 75% of the caregivers perceived mild l e v e l s of d i s t r e s s and perceptions of d i s t r e s s were s l i g h t l y higher for a small proportion (22.3%) of the caregivers. Only one caregiver was found to experience a high level of perceived d i s t r e s s i n re l a t i o n to the demand for t o t a l patient care. Caregivers' perceptions of d i s t r e s s in r e l a t i o n to s p e c i f i c patient care demands are r e f l e c t e d on Table VIII. 68 Table V The Demand for Total Patient Care Among Family Caregivers Score Frequency Percent O - 5 6 - 1 0 11 - 15 16 - 20 21 - 25 26 - 30 31 - 35 36 - 40 41 - 45 46 - 50 3 4 4 6 6 7 3 3 1 3 7.5 10.0 10.0 15.0 15.0 17.5 7.5 7.5 2.5 7.5 Total 40 100. O Note: 32 items scored 0 to 3. Minimum possible score i s 0 and maximum possible score i s 96 (32 x 3). Research Question 3: What i s the Degree of Psychological Well- Being Among Family Caregivers of Persons with Advanced Cancer? The Maslach Burnout Inventory (MBI) scores for frequency and int e n s i t y were examined for each of the three sections of the instrument: Emotional Exhaustion, Depersonalization, and Personal Accomplishment (see Table IX). The range of scores among caregivers on the Emotional Exhaustion Frequency subscale was O to 54, with a mean of 18.25 and a standard deviation of 16.30. Scores on t h i s subscale were: 52% within the low range, 27% within the moderate range, and 20% within the high range f o r experiencing feelings of emotional exhaustion. The range of scores on the Emotional Exhaustion Intensity subscale was 0 to 63, with a mean of 19.5 and a standard deviation of 17.26. 6 9 Table VI The Demand for Care Relative to S p e c i f i c Areas of Patient  Dependency Score per Care Demand 0 1 2 3 Care Demand Frequency Mean SD Bed Care 2 4 1 5 0 1 . 4 5 . 6 4 Turning -Bed 3 7 0 3 0 . 1 5 . 5 3 Ambulation 1 6 1 2 8 0 1 . 0 0 1 . 0 1 Traveling S t a i r s 1 9 0 9 4 1 . 3 4 1 . 3 5 Wheelchair Use 3 3 2 5 0 . 3 0 . 6 9 Commode Use 2 9 0 1 1 0 . 5 5 . 9 0 Bowel Elimination 1 7 1 4 1 8 1 . 0 0 1 . 1 3 Bladder Elimination 3 4 1 3 2 . 3 2 . 8 3 Catheter Care 3 4 0 1 5 . 4 3 1 . 0 4 Bathing 9 0 1 7 1 4 1 . 9 0 1 . 1 3 Shaving (males) 6 3 3 3 . 3 9 . 9 4 Teeth Care 3 0 O 6 4 . 6 0 1 . 8 0 Dressing 1 7 O 1 6 7 1 . 3 3 1 . 2 1 Special food Prep. 2 4 O 1 6 0 . 8 0 . 9 9 Feeding 3 2 0 6 2 . 4 5 . 9 3 Eating at Table 2 3 O 1 7 O . 8 5 l . O O T o i l e t Care-Night 2 8 3 7 2 . 5 8 . 9 6 Turning — Night 3 9 0 1 0 . 0 5 . 3 1 Confusion 1 8 O 1 9 3 1 . 1 2 1 . 1 2 Recognition 3 2 0 8 0 . 4 0 . 8 1 Commun i c a t i on 2 4 O 1 2 4 . 9 0 1 . 1 5 Hearing 3 4 0 6 O . 3 0 . 7 2 Seeing 3 6 3 0 1 . 1 5 . 5 3 Use of Aids 3 8 0 2 0 . 1 0 . 4 4 Crying 3 0 3 7 o 1 . 3 5 . 7 7 Worrying 2 3 O 1 6 1 . 8 2 . 9 9 Complaining 3 8 0 2 o . 1 0 . 4 4 Arguing 3 1 O 9 o . 4 5 . 8 5 Need for Attention 9 8 1 1 1 2 1 . 6 5 1 . 1 5 Giving Medications 1 4 0 9 1 7 1 . 7 2 1 . 3 4 Special Treatments 1 5 O 2 5 O 1 . 2 5 . 9 8 Take to Doctors 3 0 3 7 0 1 . 8 9 . 4 4 Note: Thirty-two items scored from O to 3 . 0=patient i s t o t a l l y independent l=patient i s p a r t i a l l y dependent 2=patient i s moderately dependent 3=patient i s t o t a l l y dependent. 70 Scores on t h i s subscale were: 62% within the low range, 25% within the moderate range, and 13% scored within the high range for experiencing feelings of emotional exhaustion. The range of scores among caregivers for the Depersonalization Frequency subscale was 0 to 17 with a mean of 2.38 and a standard deviation of 4.36. Scores on t h i s subscale were: 80% within the low range, 15% within the moderate range, and 5% within the high range for experiencing fe e l i n g s of, depersonalization. The range of scores among caregivers for the Depersonalization Intensity subscale was 0 to 14, with a mean of 2.68 and a standard deviation of 4.27. Scores on t h i s subscale were: 80% within the low range, and 20% within the moderate range for experiencing feelings of depersonalization. No caregivers Table VII Caregivers' Perceptions of Overall Distress in Relation To the  Demands for Patient Care Score Frequency Percent O - IO 13 32.5 11 - 20 IO 25. O 21 - 30 7 17.5 31 - 40 1 2.5 41 - 50 5 12.5 51 - 60 1 2.5 61 - 70 1 2.5 71 - 80 1 2.5 81 - 90 0 O 91 - lOO O O 101 - 110 0 O 111 - 120 1 2.5 Total 40 lOO.O Note: Thirty-two items scored from O to 5. Minimum possible score was O and maximum possible score was 160 (32 x 5). 71 Table VIII Perceptions of Distress Among Family Caregivers in Relation to  Care Demands of Cancer Patients. Score per Level of Perceived Distress 0 1 2 3 4 5 Care Demand Freguencv Mean SD Bed Care 27 4 3 1 4 1 .85 1.48 Turning—bed 37 0 2 0 0 1 .23 .89 Ambulation 20 3 6 4 5 2 1.43 1.69 Traveling s t a i r s 26 5 3 3 2 1 .83 1.38 Wheelchair use 37 0 1 1 1 0 .23 .83 Commode use 34 3 0 1 0 1 .40 1.19 Bowel Elimination 19 3 9 5 1 3 1.38 1.56 Bladder Elim. 33 1 2 2 0 2 .53 1.30 Catheter Care 37 0 1 1 o 1 .25 .95 Bathing 22 9 2 4 1 2 .98 1.44 Shaving (males) 10 O 1 1 o O .13 .56 Teeth Care 38 0 0 1 0 1 .20 .91 Dressing 31 2 3 1 1 2 .60 1.32 Special Food Prep. 23 4 5 2 6 0 1.10 1.52 Feeding 33 3 2 1 0 1 .38 l. O l Eat at Table 36 1 1 0 0 2 .32 1.14 Night-Toilet Care 25 5 5 2 2 1 l . l O 1.60 Turning-Night 38 1 1 O 0 O .01 .35 Confusion 18 3 6 4 4 5 1.70 1.87 Recognition 32 1 1 0 3 3 .78 1.67 Communication 23 2 5 3 3 4 1.33 1.80 Hearing 36 0 3 1 O 0 .23 .70 Vision 36 1 2 0 O 1 .25 .90 Use of Aids 39 1 0 0 O O .03 .16 Crying 26 2 4 2 3 3 1.08 1.70 Worrying 21 3 5 5 2 4 1.40 1.77 Complaining 31 3 4 1 0 1 .50 1.13 Arguing 29 1 4 4 1 1 .75 1.35 Need for Attention 11 4 8 8 7 2 2.05 1.62 Medication Admin. 29 1 3 5 1 1 .78 1.38 Special Treatments 26 O 5 3 4 1 1.03 1.58 Taken to Doctors 27 2 1 5 5 0 .98 1.56 Note i 32 items scored from 0 to 5. Zero (0)=no d i s t r e s s , l=mild d i s t r e s s , 2=somewhat distressed, 3=moderately distressed, 4=strongly distressed, and 5=very strongly distressed. Table IX Frequency and Intensity of Burnout Among Family Caregivers Burnout Subscales Frequency Percent Frequency Emotional Exhaustion Low (< 17) Moderate (18-29) High (> 30) Depersonalization Low (< 5) Moderate (6-11) High (> 12) Personal Accomplishment Low (> 40) Moderate (39-34) High (< 33) Intensity Emotional Exhaustion Low (< 25) Moderate (26-39) High (> 40) Depersonalization Low (< 6) Moderate (7-14) High (> 15) Personal Accomplishment Low ( > 44) Moderate (43-37) High ( < 36) 21 52.5 11 27.5 8 20.0 32 80.0 6 15.0 2 5.0 19 47.5 6 15.0 15 37.5 25 62.0 10 25.0 5 13.0 32 80.0 8 20.0 O 0 17 42.O 5 13.0 18 45.0 Note: Figures within parentheses are within normative data (Maslach & Jackson, 1981). 73 experienced high l e v e l s of depersonalization. The range of scores among caregivers for the Personal Accomplishment Frequency subscale was 8 to 49, with a mean of 35.65 and a standard deviation of 12.42. Scores on t h i s subscale were: 48% within the low range, 15% within the moderate range, and 38% within the high range for experiencing f e e l i n g s of personal accomplishment. The range of scores among caregivers for the Personal Accomplishment Intensity subscale was 9 to 56, with a mean of 38.03 and a standard deviation of 12.59. Scores on t h i s subscale were: 42% within the low range, 13% within the moderate range, and 45% within the high range for experiencing feelings of personal accomplishment. Research Question 4: What i s the Relationship between Care  Demands of Persons with Advanced Cancer and Perceptions of  Distress Among Family Caregivers? Using the Spearman's rank c o r r e l a t i o n c o e f f i c i e n t , a s i g n i f i c a n t p o s i t i v e r e l a t i o n s h i p was found between the cancer patients' t o t a l demand for care and the caregivers' perception of over a l l d i s t r e s s (rho=.51, p_=.00). The higher the demand for patient care, the higher the perceived stress among family caregivers. S i g n i f i c a n t p o s i t i v e relationships were found between caregivers' perceptions of d i s t r e s s and a number of s p e c i f i c patient care demands (see Table X). Table X The Relationship Between Family Caregivers' Perceptions of  Distress and S p e c i f i c Patient Care Demands. Correlation C o e f f i c i e n t Care Demand rho Bed Care .21 Turning-Bed .30 * Ambulation .56 * Traveling S t a i r s .33 * Wheelchair Use .38 * Commode Use .36 * Bowel Elimination .42 * Bladder Elimination .22 Catheter Care .44 * Bathing .24 Shaving (males) .54 Teeth Care .41 * Dressing .33 * Special Food Prep. .40 * Feeding .61 * Eat at Table .23 HS-Toileting .68 * HS-Turning -.04 Confusion .83 * Recognition .99 * Communication .83 * Hearing .79 Vision .75 Use of Aides .70 * Crying .56 » Worrying .82 * Complaining .48 * Arguing .91 * Need for Attention .15 Medication Admin. .33 * Special Treatments .55 * Take to Doctors .16 Note: *P < .0 75 Research Question 5: What i s the Relationship between  Perceptions of Distress and Psychological Well-Being Among Family  Caregivers? S i g n i f i c a n t p o s i t i v e relationships were found between caregivers' o v e r a l l perceptions of d i s t r e s s and components of burnout in terms of frequency of Emotional Exhaustion (rho=.32 p_=.02) and Depersonalization (rho=.28 p_=.03). S i g n i f i c a n t p o s i t i v e relationships were also found between caregivers' o v e r a l l perceptions of d i s t r e s s and components of burnout i n terms of int e n s i t y of Emotional Exhaustion (rho=.32 pj=.03) and Depersonalization (rho=.32 p_=.02). No s i g n i f i c a n t relationships were found between caregivers' o v e r a l l perceptions of d i s t r e s s and Personal Accomplishment. A n c i l l a r y Analysis Data were analyzed to determine possible relationships between the caregiver and care-recipient demographic data, and the caregivers' o v e r a l l perceptions of d i s t r e s s . Two s i g n i f i c a n t relationships were found. A s i g n i f i c a n t p o s i t i v e r e l a t i o n s h i p was found between caregivers' o v e r a l l perceptions of d i s t r e s s and the length of time i n hours per day spent providing care to the care-recipient (rho=.32 p==.02). That i s , the more time in hours spent providing care to the cancer patient, the higher the caregivers' o v e r a l l perceptions of d i s t r e s s . In addition, a s i g n i f i c a n t p o s i t i v e r e l a t i o n s h i p was found between caregivers' o v e r a l l perceptions of d i s t r e s s and the length of time the care-recipient had been i l l with the cancer 76 i l l n e s s . That i s , the greater the length of time the cancer patient had been i l l , the higher the caregivers' o v e r a l l perceptions of d i s t r e s s . Discussion of the Results The discussion of the r e s u l t s i s organized under four major headings: sample c h a r a c t e r i s t i c s ; care demands of cancer patients l i v i n g i n the home se t t i n g ; perceptions of d i s t r e s s among family caregivers; and psychological well-being among family caregivers. This discussion w i l l include reference to the organizing theore t i c a l framework, p a r a l l e l research studies, and methodological problems inherent to the study. C h a r a c t e r i s t i c s of the Sample While the sample of family caregivers in t h i s study i s r e l a t i v e l y small in s i z e , i t appears to r e f l e c t many c h a r a c t e r i s t i c s of the family caregiver population that i s described within the l i t e r a t u r e . The caregiver sample was comprised of varying age groups. While the mean age was 53.4 years, i t i s int e r e s t i n g to note the proportion of caregivers who were young adults between the ages of 25 to 30 years (25%), and the proportion of caregivers who were between the ages of 65 and 80 (42%). A large proportion of the caregivers were women (70%) which included wives, daughters, s i s t e r s , granddaughters, and female in-laws and a smaller proportion (30%) of the caregivers were men which included husbands, sons, and one brother-in—law. Almost a l l of the wife and husband caregivers were r e t i r e d and a l l spouse caregivers resided with the cancer patient. In contrast, the majority of the remaining caregivers did not reside with the cancer patient and were juggling f u l l or part-time jobs and other family r e s p o n s i b i l i t i e s . The large proportion of female caregivers i n t h i s study appears to be consistent with most research that pertains to family caregiving. A variety of research e x i s t s which substantiates that women generally assume the r e s p o n s i b i l i t y of providing care to a r e l a t i v e within the family u n i t . This c h a r a c t e r i s t i c i s often described within the l i t e r a t u r e in terms of the s o c i a l i z a t i o n process of women. While the commitment of caregiving i s not gender s p e c i f i c , i t appears that in our society, women are ascribed, to a much greater extent than men, the nurturing functions of caregiving (Stovel, 1988). Stovel (1988) points out that in general, "women are presumed to be responsible for the well—being of th e i r family members...and today, as in the past, i t i s expected that women w i l l care for i l l family members regardless of competing demands and personal s a c r i f i c e s " (p.105). The demographic features pertaining to gender among caregivers in the present sample supports t h i s premise. Family caregivers had been providing care in the home to family members who were in the advanced phase of t h e i r i l l n e s s for varying lengths of time. The cancer patients who were the rec i p i e n t s of care had varying types of cancer and had been i l l with the disease f o r varying lengths of time. 78 Care Demands of Persons with Advanced Cancer Living i n the Home The majority (75%) of the cancer patients were mildly impaired in that they required only minimal assistance from the caregiver. A very small proportion (25%) of the cancer patients required moderate assistance, and no cancer patients were t o t a l l y dependent on t h e i r caregiver. Based on these findings, i t appears that while a l l cancer patients in t h i s study were in the advanced phase of the cancer disease, the majority were r e l a t i v e l y independent in terms of meeting t h e i r own day-to-day needs. This finding i s not surprising based on the nature of the advanced phase of the cancer disease. According the Edstrom and M i l l e r (1981), cancer patients in the advanced phase, as opposed to the diagnostic and terminal (end) phases, may experience varying degrees of disease progression and varying types of symptoms. The advanced phase i s also characterized with varying patterns of improvement or s t a b i l i t y as well as patterns of deterioration which may occur over a matter of months or years (Edstrom & M i l l e r , 1981). The r e l a t i v e l y high level of independence found among the majority of cancer patients in t h i s study suggests that a large proportion of the cancer patients may have been i n a period of s t a b i l i t y where symptoms were absent or i f present were f a i r l y well c o n t r o l l e d . This also suggests that cancer patients were able to continue to meet t h e i r own needs with minimal assistance despite the presence of various symptoms. The finding that the majority of cancer patients were r e l a t i v e l y independent also suggests a possible methodological l i m i t a t i o n associated with the sampling procedures used in t h i s study. The recruitment of potential participants i n t h i s study was dependent on r e f e r r a l s made by health care professionals who were providing care to family caregivers and cancer patients in the home s e t t i n g . Based on the d i s c r e t i o n used in the r e f e r r a l process, i t i s possible that the majority of caregivers who were referred were those of cancer patients whose disease was f a i r l y well controlled and/or who were in the early phase of the disease progression. Therefore the sample involved i n t h i s study may not be representative of the f u l l range of home-based caregiving s i t u a t i o n s that involve patients who have advanced cancer. The demand for care among cancer patients who required assistance from t h e i r caregiver appeared to be r e f l e c t e d in the following areas of dependency: ambulation, climbing s t a i r s , bowel elimination (monitoring bowel r e g u l a r i t y and cleaning patient a f t e r accidents), bathing and dressing the patient, preparing special foods for the cancer patient, administering medications, carrying out special treatments (wound care, oxygen administration, colostomy care, and tracheostomy care), a s s i s t i n g the patient to doctor appointments, being a v a i l a b l e to the patient most or a l l of the time, and providing psychological support to cancer patients to accommodate t h e i r cognitive/emotional a l t e r a t i o n s (confusion, communication impairment, crying, worrying, and argumentiveness). Although the CSI instrument was not divided into categories of patient care demands, caregivers i n t h i s study appeared to be 80 confronted with three types of care demands: those that required the management of the patients' physical care i n terms of a c t i v i t i e s of d a i l y l i v i n g ; those that required a form of spec i a l i z e d knowledge or s k i l l which included preparing special meals and carrying out special treatments such as tracheostomy care, wound care, and colostomy care; and those that required the provision of psychological supportive care which involved compensating for the patients' confusion or communication d e f i c i t and providing emotional support. The predominance of these types of care demands were also found by Stetz (1987) who examined caregivers of terminally i l l patients, and Lingren (1985) who examined caregivers of c h r o n i c a l l y i l l patients. Both of these researchers reported that caregivers were most involved in the management of patients' physical care, treatment regimens, and a l t e r a t i o n s in cognitive/emotional states. An i n t e r e s t i n g feature of the type of care demands found among cancer patients in t h i s study was the i r underlying s i m i l a r i t y to the type of symptoms that are commonly experienced among cancer patients being cared for i n the home s e t t i n g . According to the l i t e r a t u r e , these symptoms commonly involve weakness, pain, nausea and vomiting, constipation, respiratory a l t e r a t i o n s , and mood/psychological a l t e r a t i o n s (Donovan, 1986). Hence, based on the nature of care demands found i n t h i s study, i t may be safe to assume that the family caregivers were involved in the more complex tasks of assessing and reassessing interventions aimed at managing a variety of d e b i l i t a t i n g patient symptoms as opposed to s o l e l y a s s i s t i n g the cancer patient with basic a c t i v i t i e s of d a i l y l i v i n g . Perceptions of Distress Among Family Caregivers Level of perceived d i s t r e s s among family caregivers In general, the vast majority of family caregivers perceived the t o t a l demand for patient care as mildly d i s t r e s s f u l . V a r i a b i l i t y among caregivers' perceptions of d i s t r e s s was ref l e c t e d by a small proportion of caregivers who experienced no d i s t r e s s (7.5%) in r e l a t i o n to the demands of caregiving and one family caregiver (2.5%) who experienced strong perceptions of di s t r e s s in r e l a t i o n to the demands of caregiving. The low level of perceived d i s t r e s s found among family caregivers in t h i s study was not surprising given that the majority of caregivers were required to provide only minimal amounts of patient care. This r e f l e c t s that caregivers' perceptions of d i s t r e s s may have been shaped by the meaning that caregivers attach to the degree of physical or emotional energy expended when providing care. According to Holing (1986) perceptions of stress among family caregivers are influenced by changes in the amount of care required of caregivers. Holing (1986) i d e n t i f i e s these changes as c r i t i c a l events that may be perceived as turning points that represent a perceived improvement or deterioration in the cancer patients' condition. Based on t h i s , the s l i g h t v a r i a b i l i t y found i n t h i s study among caregivers' perceptions of d i s t r e s s may have been associated with the r e l a t i v e s t a b i l i t y or control of the cancer patients' 82 physical and psychological condition. Another factor that might help to explain the low levels of perceived d i s t r e s s found among family caregivers in t h i s study i s the degree to which caregivers' l i v e s were disrupted or altered as a r e s u l t of the demands of caregiving. While the s o c i a l and economic e f f e c t s of caregiving were not examined i n t h i s study, i t i s reasonable to assume that the actual demands of patient care associated with caregiving did not produce s i g n i f i c a n t changes in the caregivers' d a i l y l i v e s . This i s based on the r e l a t i v e l y high level of independence found among cancer patients in t h i s study which in turn may have contributed to the o v e r a l l mild perceptions of d i s t r e s s found among family caregivers in t h i s study. Lingren (1985), who also used the Caregiver (Stressor) Inventory (CSI), found that caregivers varied considerably i n t h e i r perceptions of d i s t r e s s in r e l a t i o n to various demands of patient care. This was ref l e c t e d by the fact that some caregivers did not perceive any d i s t r e s s in r e l a t i o n to the components of caregiving while others perceived s i g n i f i c a n t d i s t r e s s . The r e s u l t s of Lingren's (1985) study d i f f e r e d from t h i s study, in that on the average caregivers in Lingren's (1985) study experienced higher perceptions of d i s t r e s s (M=44.99, SD=31.89). Lingren (1985) used a 46-item version of the CSI i n contrast to the 32-item version used in t h i s study which makes the comparison of r e s u l t s somewhat d i f f i c u l t . One factor which might account for the differences found among caregivers' perceptions of d i s t r e s s in Lingren's (1985) study and t h i s study may be related to the nature of the care-recipients' i l l n e s s and the length of time caregivers had been providing care. Lingren (1985) examined perceptions of d i s t r e s s among caregivers who, on the average had been caregiving for two years longer than caregivers in t h i s study and were providing care to c h r o n i c a l l y i l l dependents who were suffering with various long term d e b i l i t a t i n g i l l n e s s e s such as Alzheimers disease, multiple s c l e r o s i s , rheumatoid a r t h r i t i s , and chronic respiratory diseases. Stronger perceptions of d i s t r e s s found among caregivers in Lingren's (1985) study may therefore have been related to the longer time in which caregivers had been providing care to patients who were more dependent than care—recipients in t h i s study. The findings i n t h i s study that pertain to caregivers' perceptions of d i s t r e s s may have been affected by a methodological l i m i t a t i o n inherent i n t h i s study. Family caregivers in t h i s study were instructed to rate t h e i r perceptions of s t r e s s in r e l a t i o n s h i p to th e i r perceptions of care demands or tasks required to manage various patient impairments. It i s , however, d i f f i c u l t to know i f t h e i r ratings were in fa c t a r e f l e c t i o n of t h e i r perceptions of stres s associated with the care demands/tasks associated with managing the impairment, or were a r e f l e c t i o n of t h e i r perceptions of stress associated with the nature of the underlying symptom i t s e l f . While the alpha r e l i a b i l i t y c o e f f i c i e n t for the CSI 84 refle c t e d high i n t e r n a l consistency for both CSI column I and II (alpha=.83 and alpha=.93 respectively) t h i s factor remains a po t e n t i a l l y viable methodological l i m i t a t i o n . According to Poulshock and Deimling (1984) i t i s d i f f i c u l t to d i f f e r e n t i a t e perceptions or feel i n g s related to the care demand/tasks, from the underlying symptom or patient impairment. These authors contend that perceptions of stress p r e c i p i t a t e from a pervasive relationship that e x i s t s between care demands and the underlying symptom, rather than from s o l e l y one or the other. Relationship between the demand for patient care and  caregivers perceptions of d i s t r e s s Findings from t h i s study revealed that a s i g n i f i c a n t p o s i t i v e r e l a t i o n s h i p existed between the t o t a l demand for patient care and caregivers' o v e r a l l perceptions of d i s t r e s s (rho=.51 p_=.00). This finding was not surprising as i t i s reasonable to expect that the greater the demand for patient care as r e f l e c t e d by the patients' level of dependency, the greater the o v e r a l l perceptions of d i s t r e s s among family caregivers. The nature of t h i s s t a t i s t i c a l c o r r e l a t i o n c o e f f i c i e n t indicates a moderately strong r e l a t i o n s h i p between the two variables (Devore & Peck, 1986). That i s , the demand for t o t a l patient care explains approximately 26% of the variance found i n the caregivers' o v e r a l l perceptions of stress in r e l a t i o n to the caregiving s i t u a t i o n . This suggests that caregivers' perceptions of d i s t r e s s are partly explained by the patients' demand for care, and that other factors also influenced the caregivers' 85 o v e r a l l appraisal of the caregiving s i t u a t i o n . Lingren (1985) also found a moderate c o r r e l a t i o n between the to t a l demand for patient care and caregivers' perceptions of d i s t r e s s (r=.41 p_<.00). Lingren (1985) however found that t h i s c o r r e l a t i o n was the only one i n which the degree of patient dependency was r e f l e c t i v e of any outcome measure of stress or anxiety among family caregivers. Lingren (1985) concluded that factors other than s o l e l y the objective demand to provide patient care were related to caregivers perceptions of d i s t r e s s . The consistency of findings regarding the relationship between patient care demands and caregivers' perceptions of d i s t r e s s found in Lingren's study and t h i s study suggests that despite the type of i l l n e s s underlying the caregiving s i t u a t i o n family caregivers perceptions of d i s t r e s s are shaped to varying degrees by the objective demand to provide patient care, as well as by the caregivers' subjective interpretation of various components of caregiving. Within the context of t h i s study, a n c i l l a r y data analysis was car r i e d out to examine the association among various sociodemographic factors and caregivers' perceptions of d i s t r e s s . Two demographic variables were found to be s i g n i f i c a n t l y related to caregivers' o v e r a l l perceptions of st r e s s . F i r s t , a s i g n i f i c a n t p o s i t i v e r e l a t i o n s h i p was found between caregivers' overa l l perception of stress and the amount of time (hours per day) spent caregiving (rho=.32 p_=.02). This r e l a t i o n s h i p i s consistent with the finding that 28% of the caregivers reported 86 that due to the nature of the cancer patients' needs, they f e l t they were unable to leave the patient for more than 1-2 hours, and 30% of the caregivers perceived the need to be a v a i l a b l e to the patient at a l l times. As well, over 437. of the caregivers perceived t h i s need to provide constant (or almost constant) attention as moderate to strongly d i s t r e s s f u l . The perceived demand to provide constant attention was also reported by 18% of the family caregivers in Stetz's (1987) study who also provided care in the home to persons with advanced cancer. In Stetz's (1987) study, the demand for constant attention was categorized as "constant v i g i l a n c e " (p. 264) where inherent perceptions of stress were r e f l e c t e d by comments such as "I'm on c a l l 24 hours a day...and ...I would sleep on the couch and l i s t e n for him" (p.264). This r e l a t i o n s h i p between the amount of time spent caregiving per day and caregivers' perceptions of d i s t r e s s was somewhat surprising given that the majority of cancer patients were rated by the caregivers as requiring minimal assistance to meet their day-to—day needs. This suggests that despite the cancer patients' actual need for constant attention, caregivers in t h i s study perceived that t h e i r presence or a v a i l a b i l i t y to the cancer patient was an important component of caregiving. One factor that may help to explain t h i s i s the meaning that caregivers attach to the advanced phase of the cancer disease. Based on the v a r i a b i l i t y and u n p r e d i c t a b i l i t y i n disease progression associated with the advanced or metastatic phase of 87 cancer, i t i s possible that caregivers f e l t the need to c l o s e l y monitor the cancer patients' condition in order to i d e n t i f y any change that may have been for the better or worse. This may also r e f l e c t the caregivers' need to have some control over the caregiving s i t u a t i o n . A second p o s i t i v e r e l a t i o n s h i p was found between the length of time cancer patients had been coping with cancer and caregivers' o v e r a l l perception of stresss (rho=.33 p_=.02). This indicates that the longer the cancer patient has had cancer, the greater the perceived d i s t r e s s among family caregivers. One factor that might explain t h i s finding i s the temporal meaning that caregivers attach to the cancer patients' i l l n e s s . According to Holing (1986), caregivers' perceptions of stress may be influenced by the caregiver's subjective expectation of the duration of the deterioration and in e v i t a b l e death of the cancer patient . Holing (1986) points out that " . . . i f the rate of deterioration i s unexpectedly f a s t , both emotional and physical preparations of the patient and his family may be out of alignment. Conversely, i f the process li n g e r s , physical and emotional resources may be taxed and/or exhausted" (p.30). Therefore the rel a t i o n s h i p found i n t h i s study between the length of time the cancer patients had been coping with cancer and caregivers' perceptions of d i s t r e s s might have been influenced by the rate of the cancer patients d e t e r i o r a t i o n . Another factor that might explain the rel a t i o n s h i p found between the length of the cancer patients' i l l n e s s and 88 caregivers' perceptions of d i s t r e s s i s the s i m i l a r i t y in the pattern of v a r i a b i l i t y found among these two varia b l e s . That i s , the majority of cancer patients in t h i s study had been i l l f o r a r e l a t i v e l y short length of time and a small proportion had been i l l for a longer period of time. This was s i m i l a r to the pattern of v a r i a b i l i t y found among caregivers' perceptions of d i s t r e s s i n that, the majority of caregivers perceived mild perceptions of di s t r e s s and a small proportion experienced greater perceptions of d i s t r e s s in r e l a t i o n to the demands of caregiving. The low degree of v a r i a b i l i t y between the length of the cancer patients' i l l n e s s and caregivers' perceptions of d i s t r e s s may explain the corr e l a t i o n found in t h i s study between these two variables. A number of s i g n i f i c a n t p o s i t i v e relationships were found in t h i s study between various types of patient care demands and th e i r corresponding perceptions of s t r e s s . S p e c i f i c a l l y , care demands related to the following areas of patient dependency were p o s i t i v e l y related to caregivers' perceptions of d i s t r e s s : ambulation, turning/repositioning patient, t r a v e l i n g s t a i r s , wheelchair use, use of bedside commode, bowel elimination, catheter care, dressing, preparing special foods and feeding, night—time t o i l e t i n g , cognitive a l t e r a t i o n s (confusion, recognition, communication d e f i c i t ) , mood a l t e r a t i o n s (crying, worrying, arguing, complaining), applying aids, administering medications, and carrying out special treatments. While a l l the relationships were s i g n i f i c a n t , in a p o s i t i v e d i r e c t i o n , the strength of the majority of the co r r e l a t i o n s was 89 r e l a t i v e l y weak, that i s , between rho=.l and .5 (Devore & Peck, 1986). Care demands that were moderately correlated (rho=.5-.8) with caregiver perceived s t r e s s included a s s i s t i n g the patient with: ambulation, feeding, applying aides, and dealing with the patients' emotional upset (crying). Care demands that were strongly correlated (rho=.8-1.0) with caregiver d i s t r e s s included dealing with the patients' mood/cognitive a l t e r a t i o n s : worrying, arguing, and communication d e f i c i t s . This indicates that care demands that involved managing the cancer patients' psychological/emotional needs accounted for a greater amount of variance in caregivers' perceptions of d i s t r e s s than did care demands that involved managing the patients' physical care needs. One factor that may help to explain t h i s finding i s the meaning which caregivers a t t r i b u t e to the presence of cognitive or psychological impairments. Because a l l cancer patients in t h i s study were in the advanced phase of the disease, i t i s possible that caregivers' perceived the manifestation of cognitive or psychological changes displayed by the patient as i n d i c a t i v e of further or advanced disease progression. Perceptions of d i s t r e s s may therefore have been associated with the caregivers' appraisal of the patients' deterioration and perhaps impending death. Another factor that might explain the caregivers' perceptions of d i s t r e s s in r e l a t i o n to patients' psychological impairments i s the demand to provide constant attention or s u r v e i l l a n c e of the patient. According to Poulshock and Deimling (1984) perceptions 90 of d i s t r e s s in r e l a t i o n to patients' cognitive incapacity as opposed to physical incapacity are probably due to the perceived pervasiveness of the tasks required to care for a disoriented or confused patient. These authors state that "whereas i t may be possible to ignore or avoid an elder who i s withdrawn or is o l a t e d , the confused or incontinent elder requires constant surveillance or attention" (Poulshock & Deimling, 1984, p. 234). Therefore caregivers' perceptions of d i s t r e s s i n r e l a t i o n to the cancer patients' cognitive or psychological impairments may have been influenced by the bothersome nature of having to provide constant attention to the cancer patient. A s i g n i f i c a n t r e l a t i o n s h i p between care-recipients' physical and psychological impairments and caregivers' perceptions of d i s t r e s s was found by Poulshock and Deimling (1984). These researchers found that over 30% of the caregivers perceived the following physical care demands as d i f f i c u l t , t i r i n g , and upsetting: ambulation, bathing, dressing, t o i l e t i n g , incontinence, and feeding. With respect to care demands involving the care-recipients' psychological care needs, over 45% percent of the caregivers reported having to deal with the care-r e c i p i e n t s ' confusion, uncooperativeness, and disruptive behaviors as somewhat to greatly d i s t r e s s f u l . These researchers found that care demands associated with managing the patients' cognitive incapacity and physical ADL impairments demonstrated the strongest associations with t h e i r corresponding perceptions of stress (r=.44 and r=.46 r e s p e c t i v e l y ) . 91 Perceptions of stress associated with care—recipients' physical and psychological care needs were also found by Lingren (1985). Using stepwise regression, Lingren (1985) found that items r e l a t i n g to patient psychological needs were strong predictors of caregiver s t r e s s . These items included: dealing with disturbing patient behaviors such as arguing, worrying, crying, and complaining. With respect to physical patient care needs, Lingren (1985) found that the demand to provide special care such as preparing special foods, providing catheter care, and using aids such as the bedside commode were also strong predictors of caregiver s t r e s s . The th e o r e t i c a l framework used in t h i s study was Lazarus and Folkman's (1984) theory of stress, appraisal, and coping. This framework was used to understand the rela t i o n s h i p between the si t u a t i o n factor of care demands associated with caregiving and caregivers' cognitive appraisal of st r e s s . Within the present study, s i g n i f i c a n t p o s i t i v e relationships were found between the demand for various types of patient care and perceptions of d i s t r e s s among family caregivers. This suggests that the greater the demand f o r patient care, the higher are the perceptions of d i s t r e s s among family caregivers. The findings of t h i s study regarding the influence of the s i t u a t i o n factor of care demands on family caregivers' appraisal of stress were therefore i n the expected d i r e c t i o n according to the theoret i c a l framework. The s i g n i f i c a n t r e l a t i o n s h i p found between the o v e r a l l demand for patient care and caregivers' o v e r a l l perceptions of d i s t r e s s also supported Lazarus and Folkman's (1984) theoretical perspective concerning the interdependent rel a t i o n s h i p between person and s i t u a t i o n factors. Findings i n t h i s study supported the the o r e t i c a l expectation that caregivers' cognitive appraisal of s t r e s s i s influenced by the s i t u a t i o n factor of patient care demands as well as other person factors which might include the caregivers' commitments and b e l i e f s . Psychological Well-Being Among Family Caregivers  Level of burnout among family caregivers Psychological well-being among family caregivers was measured according to the frequency and in t e n s i t y scores on the MBI which were computed for the three components of burnout: emotional exhaustion, depersonalization, and personal accomplishment. Findings on the MBI reveal that scores for the emotional exhaustion, depersonalization, and personal accomplishment subscales r e f l e c t e d the same d i s t r i b u t i o n for the frequency and int e n s i t y dimensions of burnout. This i s consistent with the fact that since these data were c o l l e c t e d , t h i s researcher has been informed by the Consulting Psychologists Press (1989) that, based on the accumulation of s u f f i c i e n t evidence which supports strong c o r r e l a t i o n s between the frequency and in t e n s i t y dimensions, measures of burnout are now based on the frequency dimension of the instrument and the i n t e n s i t y dimension has been eliminated. Based on t h i s information, for the remainder of t h i s discussion, the manifestation of the three components of burnout 93 (emotional exhaustion, depersonalization, and personal accomplishment) w i l l be discussed in r e l a t i o n to the frequency dimension of burnout. Family caregivers were found to experience varying l e v e l s of burnout in terms of feelings of emotional exhaustion, depersonalization, and personal accomplishment. Half the family caregivers experienced low lev e l s of emotional exhaustion while the remaining half experienced moderate to high lev e l s of emotional exhaustion. According to Maslach and Jackson (1981) th i s r e f l e c t s that while half the caregivers experienced low feelings of emotional exhaustion, the other half experienced moderate to high feelings of being emotionally overextended and exhausted by the demands of caregiving. In contrast, the vast majority of caregivers were found to experience low l e v e l s of depersonalization. This r e f l e c t s that while a very small proportion of caregivers experienced fee l i n g s of depersonalization, the majority of caregivers did not experience fee l i n g s that are associated with an impersonal response to the care—recipient (Maslach & Jackson, 1981). Study res u l t s pertaining to the depersonalization component of burnout must however be interpreted cautiously as the alpha r e l i a b i l i t y for i nternal consistency was low for t h i s subscale. This may indicate that the questions on the MBI that measured depersonalization may have tapped into other dimensions of w e l l -being, or were interpreted d i f f e r e n t l y among caregiver respondents. V a r i a b i l i t y i n the interpretation of these 94 questions may be r e f l e c t i v e of a methodological l i m i t a t i o n associated with the sampling procedure used i n t h i s study. That i s , caregivers who had the questionnaire administered d i r e c t l y by the researcher had the opportunity to c l a r i f y the meaning of various questions found on the questionnaire whereas caregivers who completed the questionnaire by mail did not have t h i s opportunity and may have interpreted the questions d i f f e r e n t l y . This may therefore be a factor that contributed to the low alpha r e l i a b i l i t y for internal consistency found on the depersonalization subscale. F i n a l l y , with respect to the t h i r d component of burnout, the scores found on the personal accomplishment subscale r e f l e c t e d a U —distribution. That i s , almost half the caregivers experienced a low level of personal accomplishment, a small number of caregivers experienced moderate leve l s of personal accomplishment, and j u s t less than half experienced a high level of personal accomplishment. According to Maslach and Jackson (1982) t h i s r e f l e c t s that while approximately half the caregivers did not experience p o s i t i v e f e e l i n g s of personal accomplishment from caregiving, the other half experienced a high degree of feelings of competence and successful achievement in r e l a t i o n to t h e i r caregiving work. Overall, the findings in t h i s study r e f l e c t that approximately half the caregivers experienced moderate to high levels of emotional exhaustion and/or low l e v e l s of personal accomplishment. Moderate feelings of depersonalization were experienced by a very small proportion of family caregivers. This finding suggests that caregivers in t h i s study had not reached a point of experiencing feelings of depersonalization in r e l a t i o n to the cancer patients. This may be explained in terms of the r e l a t i v e l y short length of time that the majority of caregivers had been functioning in the caregiver r o l e . The majority of caregivers in t h i s study had been providing care for up to 1 year (72.5%), whereas in other caregiving s i t u a t i o n s the length of caregiving might l a s t as long as f i v e to ten year and even longer depending on the nature of the underlying i l l n e s s . Caregivers in these s i t u a t i o n s may therefore be more vulnerable to developing feelings of depersonalization. The outcome of moderate to high le v e l s of emotional exhaustion among caregivers i n t h i s study was not s u r p r i s i n g . This finding i s consistent with the l i t e r a t u r e which suggests that family caregiving i s synonymous with the outcomes of physical and/or psychological s t r a i n and exhaustion. Based on findings which revealed that cancer patients required minimal assistance from t h e i r caregiver, i t appears that the outcome of emotional exhaustion among caregivers i n t h i s study was associated with the psychological s t r a i n associated with caregiving more so than the physical s t r a i n that might otherwise re s u l t from the demand to provide heavy patient care. This suggests that caregivers' subjective interpretation or appraisal of the components of caregiving may have had a greater impact on caregivers' psychological well-being than the actual objective 96 demand to provide patient care. The findings related to the outcome of burnout among family caregivers i n t h i s study were interesting i n terms of the dichotomy of burnout as high le v e l s of emotional exhaustion and/or low le v e l s of personal accomplishment. Based on these findings i t i s possible that caregivers may have experienced one or more of the three components of burnout. One factor that might explain the v a r i a b i l i t y found among the three components of burnout i s the varying length of time caregivers had been providing care. The length of time caregivers i n t h i s study had been providing care varied from a minimum of 1 month to as long as 45 months (M=13.6 months). This suggests that caregivers varied in terms of the length of time they had been exposed to the cancer experience. It i s possible that feelings of emotional exhaustion among caregivers who had been providing care for a shorter period of time may have been affected by the overwhelming stress or c r i s i s f eelings that often accompany a cancer diagnosis. On the other hand, fee l i n g s of emotional exhaustion among caregivers who had been providing care for a longer period of time may have been influenced by the degree of t h e i r acceptance of the cancer s i t u a t i o n . The length of time caregivers had been providing care to care—recipients was found to be an i n f l u e n c i a l variable i n Lingren's (1985) study. Lingren (1985) who also measured burnout among family caregivers, found that while caregivers experienced moderate levels of emotional exhaustion they also experienced 97 high l e v e l s of personal accomplishment. The proportion of caregivers in Lingren's (1985) study who experienced high l e v e l s of personal accomplishment was much greater than that found i n t h i s study. Lingren (1985) attributed the high lev e l s of personal accomplishment among family caregivers to the length of time i n which caregivers functioned i n the caregiving role and the a v a i l a b i l i t y and adequacy of s o c i a l support for the caregiver. According to Lingren (1985) the longer one functions in the caregiver r o l e the more organized and adapted one becomes and i s able to achieve a greater sense of control over the s i t u a t i o n . As well, caregivers who have greater s o c i a l support are able to receive more p o s i t i v e reinforcement and verbal strokes of recognition in r e l a t i o n to t h e i r caregiving commitment. Lingren (1985) states that these components s i g n i f i c a n t l y influence the manifestation of fe e l i n g s of personal accomplishment and value. While half the caregivers in t h i s study experienced low levels of personal accomplishment i t i s important to note that the other half experienced moderate to high feelings of personal accomplishment i n r e l a t i o n to caregiving. This indicates that i t i s possible that while caregivers experienced moderate to high feelings of emotional exhaustion they may have also experienced moderate to high fe e l i n g s of personal accomplishment. One factor that might explain t h i s finding i s the degree of independence found among the cancer patients in t h i s study. Caregivers who were required to provide minimal assistance to the cancer patient 98 may have experienced a greater sense of control over the caregiving s i t u a t i o n which i n turn may have contributed to feelings of s a t i s f a c t i o n and competence in r e l a t i o n to carrying out the demands of caregiving. Another factor that might explain the outcome of moderate to high feelings of personal accomplishment among caregivers in t h i s study i s the nature of t h e i r r e l a t i o n s h i p to the cancer patients. A l l caregivers were related on a f a m i l i a l basis to the cancer patients. Hence caregivers may have f e l t a great sense of commitment and accomplishment in being able to f u l f i l l t h e i r family member's wish to remain at home. P o s i t i v e feelings of personal accomplishment may also have been related to the rewarding fee l i n g s that a r i s e from the s a t i s f a c t i o n of knowing that a loved one i s receiving quality care. Based on the findings from t h i s study i t i s possible that caregivers' f e e l i n g s of emotional exhaustion were counterbalanced by the concomitant feelings of personal accomplishment that may have resulted from providing care to a family member. One other study was found that also i d e n t i f i e d the outcome of p o s i t i v e f e e l i n g s of personal accomplishment among caregivers of terminally i l l patients. Holing (1986) found that family caregivers of cancer patients in the terminal phase of the i l l n e s s , i d e n t i f i e d a variety of events as j o y f u l or p o s i t i v e . Over half (57%) of Holing's sample described the closeness they experienced with t h e i r loved one. This was re f l e c t e d by comments such as "the nights we had r e a l l y good talk sessions — we came 99 to a r e a l l y beautiful understanding" (Holing, 1986). Holing (1986) also found that 42.9% of the caregivers described the pleasure and togetherness of having family and friends par t i c i p a t e i n the caregiving s i t u a t i o n . As well, 21% of the caregivers i d e n t i f i e d the s a t i s f a c t i o n of caring for t h e i r loved one and knowing that he or she was receiving q u a l i t y care (Holing, 1986). Relationship between perceptions of d i s t r e s s and burnout  among caregivers S i g n i f i c a n t p o s i t i v e r e l a t i o n s h i p s were found between caregivers' o v e r a l l perceptions of d i s t r e s s and two of the three components of burnout. Perceptions of o v e r a l l d i s t r e s s among family caregivers were found to be s i g n i f i c a n t l y related to burnout in terms of emotional exhaustion and depersonalization and were not s i g n i f i c a n t l y related to feelings of personal accomplishment. As well, the t o t a l demand for patient care/dependency was not s i g n i f i c a n t l y related to any of the three components of burnout. This indicates that despite the t o t a l demand for patient care, caregivers' perceptions of d i s t r e s s were associated with the outcome of moderate and high l e v e l s of emotional exhaustion and moderate l e v e l s of depersonalization but not with personal accomplishment. Lack of a s i g n i f i c a n t r e l a t i o n s h i p between caregivers' perceptions of d i s t r e s s and the outcome of personal accomplishment may have been related to the U—distribution of scores found on the personal accomplishment subscale. The 100 proportion of high scores of personal accomplishment may have cancelled out the s i g n i f i c a n c e of the proportion of low scores of personal accomplishment thereby d i s s i p a t i n g a possible relationship between caregivers' perceptions of d i s t r e s s and the level of personal accomplishment. Lingren (1985) s i m i l a r l y found that caregivers' o v e r a l l perceptions of d i s t r e s s were s i g n i f i c a n t l y related to the outcome manifestations of emotional exhaustion and depersonalization and were not related to the outcome of personal accomplishment. Lingren (1985) also found that the t o t a l demand for patient care in terms of patient dependency was not s i g n i f i c a n t l y related to the outcome manifestations of the components of burnout. Lingren's (1985) findings were therefore consistent with the findings in t h i s study which revealed that no matter what the degree of patient dependency, the greater the perceptions of d i s t r e s s among caregivers, the higher the outcome of emotional exhaustion and depersonalization. These findings suggest that caregivers' subjective appraisal of d i s t r e s s may have had a greater impact on the outcome of caregiving than did the actual objective demands of patient care. The d i r e c t i o n of the r e l a t i o n s h i p between caregivers' appraisal of d i s t r e s s and the adaptational outcomes of psychological well—being among family caregivers was i n the expected d i r e c t i o n of the t h e o r e t i c a l framework used i n t h i s study. According to Lazarus and Folkman (1984), a person's cognitive appraisal of a s i t u a t i o n influences the mobilization of 101 coping resources, which ultimately a f f e c t adaptational outcomes. S i g n i f i c a n t p o s i t i v e r e l a t i o n s h i p s were found between caregivers' o v e r a l l perceptions of d i s t r e s s and the emotional exhaustion and depersonalization components of burnout. Hence, caregivers who experienced greater perceptions of d i s t r e s s also experienced higher l e v e l s of emotional exhaustion and depersonalization. No s i g n i f i c a n t relationships were found between caregivers' o v e r a l l perceptions of d i s t r e s s and personal accomplishment. Based on the theoretical framework, findings of th i s study suggest that higher l e v e l s of perceived d i s t r e s s might i n t e r f e r e with the coping processes needed to manage the stress generated from the caregiving s i t u a t i o n , which i n turn a f f e c t the outcome of feel i n g s of emotional exhaustion and in a few instances depersonalization. Summary The demographic c h a r a c t e r i s t i c s of the caregiver sample involved in t h i s study were described at the outset of t h i s chapter. Participants were predominantly female, had been providing care for varying lengths of time, and were r e l a t i v e l y free of any major health problems. The care-recipients were a l l in the advanced stage of the cancer i l l n e s s , had varying types of cancer, and varied i n terms of the length of time they had been i l l with the disease. Overall, the majority of cancer patients were quite independent and required minimal assistance with t h e i r care needs. A small proportion required moderate assistance from the 102 caregiver and no cancer patients required t o t a l care. For those patients who required assistance from the caregiver, the areas of dependency appeared to r e f l e c t the patients' physical, psychological, and treatment needs. The majority of caregivers perceived mild perceptions of d i s t r e s s in r e l a t i o n to the demands of patient care. A small proportion of caregivers did not experience any d i s t r e s s in r e l a t i o n to the patients' care needs and only one caregiver experienced strong perceptions of d i s t r e s s in r e l a t i o n to various patient care demands. A s i g n i f i c a n t positive r e l a t i o n s h i p , of moderate strength, was found between the o v e r a l l demand for patient care and caregivers' o v e r a l l perceptions of s t r e s s . Based on the moderate strength of the r e l a t i o n s h i p , i t appears that caregivers' perceptions of stress are partly explained by the patients' demand for care, and that other factors may influence the caregivers' o v e r a l l appraisal of the caregiving s i t u a t i o n . Demographic variables that involve the amount of time (hours) spent caregiving per day and the length of time the patient has been coping with the cancer i l l n e s s were found to be s i g n i f i c a n t in r e l a t i o n to the caregivers' o v e r a l l perceptions of d i s t r e s s . While s i g n i f i c a n t , the strength of the relationships between these variables and caregivers' perceptions of d i s t r e s s were r e l a t i v e l y weak. Approximately half of the caregivers were found to experience burnout in terms of moderate to high l e v e l s of emotional exhaustion and/or low l e v e l s of personal 103 accomplishment. A very small proportion of caregivers experienced moderate levels of depersonalization. The findings related to the manifestation of depersonalization must however be interpreted cautiously due to the low alpha r e l i a b i l i t y for inter n a l consistency on the depersonalization subscale. A s i g n i f i c a n t r e l a t i o n s h i p was found between caregivers' perceptions of d i s t r e s s and the manifestation of burnout in terms of emotional exhaustion and depersonalization. No s i g n i f i c a n t r e l a t i o n s h i p was found between caregivers' perceptions of d i s t r e s s and personal accomplishment. As well, the t o t a l demand for patient care* hence level of dependency was not s i g n i f i c a n t l y related to any of the components of burnout. This suggests that caregivers's subjective appraisal of stress had a greater impact on caregivers' psychological well-being than did the actual "hands on" demand to provide patient care. The r e s u l t s of the study were discussed i n r e l a t i o n to methodological l i m i t a t i o n s inherent i n the study as well as findings from other related research. The study findings were si m i l a r to those found by other researchers and were in the expected d i r e c t i o n of the theoret i c a l framework. 104 CHAPTER FIVE Summary, Conclusions, Implications, and Recommendations Introduction This study was designed to examine the care demands of persons with advanced cancer l i v i n g in the home se t t i n g , family caregivers' perceptions of d i s t r e s s in r e l a t i o n to patient care demands, and the level of psychological well-being among family caregivers. As well, t h i s study was designed to explore the relationships between these variables. This chapter provides an overview of the study, conclusions, implications for nursing practice, theory and education, and recommendations for further research. Summary A review of the l i t e r a t u r e indicates that family caregivers are confronted with a variety of care demands that involve d i r e c t physical patient care, intrapersonal demands, and interpersonal demands. Most research describes caregiving in terms of the demand to provide physical care. Very l i t t l e research e x i s t s which examines the i n t r a — and interpersonal care demands that confront family caregivers on an ongoing basis. Several researchers suggest that based on the continual losses associated with caregiving, that family caregivers generally perceive caregiving as a s t r e s s f u l experience. Some research studies indicate that caregiver perceptions of stress are related to the presence of various physical and/or psychological patient symptoms or i l l n e s s c h a r a c t e r i s t i c s , whereas other research 105 studies suggest that caregivers' perceptions of stress are related to the s p e c i f i c care demands or tasks associated with managing the underlying patient symptom/impairment. As well, caregivers' perceptions of stress are also described to be related to the degree of patient dependency. While several research studies e x i s t which examine the manifestation of s t r e s s in caregiving, few studies c l e a r l y specify i f the manifestation of stress i s being measured as an outcome of caregiving, or as an antecedent variable that mediates coping processes, hence influences outcomes of caregiving. An abundance of research e x i s t s which suggests that emotional s t r a i n and exhaustion are inherent outcomes of family caregiving. Several research studies e x i s t which suggest that caregiving has a negative impact on caregivers' psychological well—being i n terms of low morale, low l e v e l s of l i f e s a t i s f a c t i o n , depression, and burnout among family caregivers. While the impact of caregiving on caregivers' psychological w e l l -being has been widely examined i n r e l a t i o n to caregivers of the e l d e r l y and chronic—cognitively impaired, very l i t t l e research has been found which examines these variables among family caregivers of persons with advanced cancer. The purpose of t h i s study was therefore designed to address the gaps i d e n t i f i e d i n the l i t e r a t u r e . This d e s c r i p t i v e c o r r e l a t i o n a l study was conducted i n a large c i t y located in Western Canada. Data were c o l l e c t e d from a convenience sample of 40 family caregivers who were providing 106 care in the home to a r e l a t i v e with advanced cancer. Procedures for data c o l l e c t i o n in t h i s study were designed to prevent the imposition of any added stress on caregiver participants. Two approaches to data c o l l e c t i o n were therefore implemented. Approximately half the caregiver sample were mailed the questionnaire and the other half were v i s i t e d by the researcher for the purpose of administering the questionnaire. No s i g n i f i c a n t differences were found between the two groups i n terms of t h e i r responses on the instruments used i n the study, hence data from the two groups of family caregivers were pooled. A l l participants completed the Caregiver (Stressor) Inventory (CSI), the Maslach Burnout Inventory (MBI), and an information sheet. The data were analyzed using de s c r i p t i v e s t a t i s t i c s and nonparametric s t a t i s t i c a l t e s t s . The sample was comprised of 70% females and 30% men and the mean age of the family caregivers was 53.4 years. The majority of caregivers were not employed (45%), 22.5% had part—time jobs, and 32% had f u l l — t i m e jobs. A large percentage of the caregivers were wives (30%) and daughters (22.5%), and a smaller proportion were husbands (15%), sons (10%), and various in-law r e l a t i o n s (22.5%). The mean length of time caregivers spent caring for the cancer patients was 13.6 months and the average time spent per day providing care was 8.38 hours. The majority of caregivers reported having no major health/medical problems. The mean age of the cancer patients was 69 years and 42% were males and 58% were females. The cancer patients were coping 107 with various types of cancer and for varying lengths of time. A l l were i n the advanced phase of the i l l n e s s , whereby no further aggressive curative therapies were being received. A l l caregivers and cancer patients were receiving regular v i s i t s by a Home Care nurse and the majority were receiving homemaker assistance within the home. The majority of cancer patients were minimally dependent on t h e i r caregivers to provide assistance with various care demands. A small proportion required moderate assistance from the caregivers and no cancer patients required t o t a l care. The demand for care among cancer patients was i n r e l a t i o n to t h e i r a c t i v i t i e s of d a i l y l i v i n g , t h e i r need for special treatments, and t h e i r need for psychological support. The o v e r a l l level of dependency found among cancer patients in t h i s study was consistent with what might be expected for indi v i d u a l s who are in the advanced phase of cancer. The finding that the majority of cancer patients required minimal assistance from th e i r caregiver suggests that cancer patients i n t h i s study were able to function with r e l a t i v e independence despite the presence or absence of symptoms. The areas of dependency in which cancer patients required assistance were s i m i l a r to that found in e a r l i e r research which addressed care demands of chronic and terminally i l l persons being cared for in the home s e t t i n g . Overall, the majority of family caregivers perceived the tot a l demand for patient care as mildly d i s t r e s s f u l . A small proportion of caregivers appraised the patient care demands with 108 no d i s t r e s s and a small proportion of caregivers appraised patient care demands as moderately d i s t r e s s f u l . Only one family caregiver was found to experience strong perceptions of d i s t r e s s in r e l a t i o n to the patient care demands. The finding that the majority of family caregivers perceived the demands of caregiving as mildly d i s t r e s s f u l was consistent with the finding that the majority of cancer patients in t h i s study required minimal assistance from t h e i r caregiver. This suggests that the appraisal of stress among caregivers in t h i s study was influenced by the r e l a t i v e amount of physical and/or psychological energy expended when providing care. A s i g n i f i c a n t r e l a t i o n s h i p , of moderate strength, was found between the t o t a l demand for patient care and caregivers' o v e r a l l perceptions of d i s t r e s s . A moderate c o r r e l a t i o n between these variables indicated that caregivers' perceptions of d i s t r e s s were p a r t i a l l y explained by the cancer patients' t o t a l demand for care, and that other factors also influence the caregivers' overall appraisal of the caregiving s i t u a t i o n . Based on a n c i l l a r y data analysis of the demographic variables involved in t h i s study, other factors that could be involved i n shaping caregivers perceptions of d i s t r e s s are the amount of time (hours per day) spent caregiving and a greater length of time in which the cancer patient had been i l l with the cancer disease. Based on the t h e o r e t i c a l framework used i n t h i s study, other factors which influenced caregivers' o v e r a l l perceptions of d i s t r e s s may have included the caregivers' personal commitments 109 and b e l i e f s as well as the meaning the caregiver a t t r i b u t e s to the i l l n e s s and care demands related to the i l l n e s s . A variety of s p e c i f i c patient care demands were found to be s i g n i f i c a n t l y related to caregivers' perceptions of d i s t r e s s . Care demands that accounted for the greatest amount of variance in caregivers' perceptions of d i s t r e s s involved managing the cancer patients' psychological/ emotional needs. This finding supported e a r l i e r research which addressed the manifestation of stress among family caregivers of c h r o n i c a l l y i l l persons being cared for i n the home s e t t i n g . These findings suggest that the appraisal of stress among family caregivers i s influenced by the level of the patients' dependency as well as the type of the patients' dependency. With respect to the outcomes of burnout, approximately half the caregivers experienced moderate to high lev e l s of emotional exhaustion, a small portion of caregivers experienced moderate lev e l s of depersonalization, and approximately half the caregiver sample experienced low l e v e l s of personal accomplishment. These findings suggest that family caregivers in t h i s study may have experienced one or more of the three components of burnout concurrently. The findings indicate that approximately half the caregivers experienced moderate to high lev e l s of emotional exhaustion and/or low levels of personal accomplishment. As well, i t i s possible that while caregivers experienced high le v e l s of emotional exhaustion, they might also experienced moderate to strong fee l i n g s of personal accomplishment. n o S i g n i f i c a n t p o s i t i v e relationships were found between caregivers' o v e r a l l perceptions of d i s t r e s s and the emotional exhaustion and the depersonalization components of burnout. No s i g n i f i c a n t relationships were found between caregivers' o v e r a l l perceptions of d i s t r e s s and the outcome of feelings of personal accomplishment. As well, no s i g n i f i c a n t r elationships were found between the t o t a l demand for patient care and the three components of burnout. This suggests that despite the t o t a l demand for patient care, caregivers' perceptions of d i s t r e s s were associated with the outcome of moderate and high l e v e l s of emotional exhaustion and moderate leve l s of emotional depersonalization. These findings were found to support e a r l i e r research which addressed stress and burnout among family caregivers of the c h r o n i c a l l y i l l . Lazarus and Folkman's (1984) theory of stress, appraisal, and coping was used i n t h i s study to explain the s i g n i f i c a n t relationships involving caregiver's perceptions of d i s t r e s s and the outcome of burnout among family caregivers. The findings of the c o r r e l a t i o n a l analysis suggested that the greater the demands for patient care, hence le v e l of patient dependency, the greater the appraisal of stress by.the caregiver, and that t h i s s t r e s s i s associated with moderate to high degrees of emotional exhaustion and i n a few instances a moderate degree of depersonalization. The findings from t h i s study were in the expected d i r e c t i o n of the t h e o r e t i c a l framework and the related l i t e r a t u r e . Conclusions Based on a small sample s i z e and the u t i l i z a t i o n of convenience sampling procedures, the re s u l t s of t h i s study cannot be generalized. Study r e s u l t s however reveal various s i m i l a r i t i e s and trends among family caregivers who participated in t h i s study. Family caregivers of persons with advanced cancer are required to provide varying amounts of assistance to family members who are coping with advanced cancer i n the home s e t t i n g . The amount of care that i s required i s r e f l e c t i v e of the patient's level of dependency which i s associated with the r e l a t i v e s t a b i l i t y of the patients' physical and/or psychological condition. Even though cancer patients may have various symptoms they may s t i l l be able to function within the home setting with a minimal level of assistance from t h e i r caregiver. The type of care required among cancer patients who are dependent on t h e i r caregiver i s r e f l e c t i v e of th e i r physical, psychological/emotional, and i l l n e s s treatment needs. Family caregivers who are providing care i n the home to cancer patients with advanced cancer experience varying l e v e l s of perceived d i s t r e s s . The level of d i s t r e s s that i s experienced appears to be proportional to the cancer patients' level of dependency and related demand for care. The greater the demand for care the greater the level of perceived d i s t r e s s among family caregivers. In addition to the amount of care that i s required, caregivers' perceptions of d i s t r e s s are also influenced by the 112 type of patient care that i s required. Care demands that involve the management of patients' psychological/emotional needs appear to contribute to greater perceptions of d i s t r e s s among family caregivers of persons with advanced cancer. Other factors that are associated to caregivers' perceptions of stress include the amount of hours per day spent caregiving, the length of time the patient has been i l l with the cancer disease, and the caregivers' personal commitments and b e l i e f s . Family caregiving i s associated with burnout in terms of emotional exhaustion, depersonalization, and personal accomplishment. However, the manifestation of these components of burnout varies among family caregivers. Although burnout i s looked at as a composite of these three components, i t appears that a l l three are not necessarily present among family caregivers. The main components of burnout that are seen among family caregivers appear to be related to f e e l i n g s of emotional exhaustion and/or personal accomplishment. Caregivers' cognitive appraisal of d i s t r e s s i s related to the outcome feel i n g s of burnout among family caregivers and not to the actual demand to provide patient care. Family caregivers who experience greater l e v e l s of perceived d i s t r e s s in r e l a t i o n to caregiving appear to be more vulnerable to experiencing feelings of emotional exhaustion and/or depersonalization. Implications for Nursing Practice. Theory, and Education The findings from t h i s study suggest several important implications for nursing practice, theory, and education. 113 Because family caregiving may have a negative impact on caregivers' psychological well-being i t i s important that nurses view family caregivers as recipien t s of care as well as providers of care. Therefore, in addition to providing care to cancer patients within the home set t i n g , nurses must also focus t h e i r assessment and nursing interventions towards meeting the needs of family caregivers'. This in turn may d i r e c t nurses to incorporate family theory concepts as a basis for assessing and planning care to meet the interdependent needs of family caregivers as well as other family members involved i n the cancer experience. The importance of viewing the family as the recipient of nursing care should also f a c i l i t a t e nursing administrators to incorporate the needs of the family caregiver into the mandate of t h e i r programs and develop formal ways to ensure that family caregivers' needs are appropriately assessed and dealt with. Because cancer patients in the advanced phase of the cancer disease vary i n terms of the manifestation of symptoms and the level of disease progression, i t i s important that nurses assess the presence of various patient symptoms as well as the impact symptoms have on the cancer patients' functional a b i l i t i e s . Nursing assessments must also focus on the family caregivers' perception of these symptoms and th e i r a b i l i t y to control the symptoms within the home s e t t i n g . As well, i t i s important that nurses be able to determine whether or not the patients' symptoms might be better controlled within the hospital s e t t i n g . Nurses 114 must be able to accept the fact that despite the inherent benefits of home-based care i t i s not always f e a s i b l e for cancer patients to be cared for in the home setting due to the complexity of th e i r symptoms. Nursing interventions might therefore involve helping the cancer patients as well as family caregivers to acknowledge that in order to achieve a higher level of symptom control i t may be more suitable for the patient to be hospitalized. Because the rate of disease progression and the experience of symptoms among cancer patients in the advanced phase of the cancer disease i s so variable, nurses must continually assess the cancer patients' changing demands for care and the family caregivers' physical and psychological capacity and willingness to manage these demands on an ongoing basis within the home set t i n g . This necessitates that nurses continually reassess the patients' physical and psychological condition as well as the caregivers' appraisal of t h e i r a b i l i t y to continue to carry on in the caregiver r o l e . Assessments should also focus on the need to increase the amount of home support services i n order to ensure that family caregivers' are adequately supported. Because family caregivers vary in th e i r appraisal of st r e s s in r e l a t i o n to the various patient care demands nurses must be aware of the need to perform i n d i v i d u a l i z e d assessments of family caregivers' i n order to understand t h e i r unique appraisal or interpretation of various patient care demands. This may enable nurses to i d e n t i f y which types of patient care demands are 115 perceived as s t r e s s f u l and plan nursing interventions which ameliorate or decrease the associated s t r e s s . Depending on the underlying stimulus that p r e c i p i t a t e s perceptions of d i s t r e s s , nurses may be directed to intervene by teaching caregivers necessary s k i l l s and techniques needed to carry out complex care tasks as well as arrange for appropriate l e v e l s of community home support services. Since the management of patients' psychological/emotional needs are p a r t i c u l a r l y d i s t r e s s f u l among family caregivers, nursing interventions should include teaching family caregivers about the physiological progression of the disease and i t s associated psychological manifestations. Nurses can be instrumental in reassuring caregivers that various physical and psychological patient changes are part of the normal progression of the disease, and f a c i l i t a t e the development of anticipatory coping s k i l l s which are needed to cope with future changes i n the patients condition and changing demands for care. Since family caregivers' perceptions of d i s t r e s s are related to the manifestation of burnout as emotional exhaustion and depersonalization nurses must be attentive to the signs and symptoms of these components of burnout and implement nursing interventions that prevent or decrease the occurence of these negative outcomes. This may involve arranging for increased home support services, or r e f e r r i n g family caregivers to appropriate community support groups and/or professional counseling services such as those provided by hospice workers, g r i e f counsellors, or 116 family therapists. F i n a l l y , nurses can also intervene by teaching family caregivers about the a v a i l a b i l i t y and benefits of respite care. Because family caregivers may derive a posit i v e sense of personal accomplishment and s a t i s f a c t i o n from caregiving i t i s important that nurses acknowledge that while providing care to a terminally i l l family member i s a d i f f i c u l t s i t u a t i o n , caregiving i s not exclusively a negative experience for family caregivers. Although i t may appear evident that the caregivers' e f f o r t s are po s i t i v e , nurses may need to reinforce them with the caregiver. Nurses can be instrumental in a s s i s t i n g family caregivers to acknowledge the posit i v e aspects of caregiving both for themself as well as the care-recipient. Discussion of the positive aspects of caregiving may help to balance the negative emotions that are inherent i n caregiving. Based on t h i s study, the complexity of the caregiving s i t u a t i o n requires a broad nursing education that integrates the role of the nurse in community health, family health, and p a l l i a t i v e care. The preparation of the health care professional should include appropriate knowledge and s k i l l s to apply the nursing process when caring for persons and families who are coping with advanced cancer. Knowledge pertaining to family health, death and dying, healthy coping, the i l l n e s s t r a j e c t o r y associated with terminal i l l n e s s , g r i e f counselling, and managing confused patients are relevant i n t h i s area. Nurses must also have good assessment s k i l l s i n order to gather: objective data 117 about the demands of caregiving; subjective data about the family caregivers' interpretation of the caregiving s i t u a t i o n ; and data about factors such as s o c i a l support that might influence the caregivers' a b i l i t y to cope with the caregiving s i t u a t i o n . As the movement of health care for the chronic and terminally i l l continues to move from the hospital to the community se t t i n g , nursing c u r r i c u l a must incorporate content that enables nurses to acquire the necessary knowledge to perform nursing care within the community s e t t i n g . Content that focuses on assessing the family unit, the home environment, and the a v a i l a b i l i t y and impact of community resources i s of p a r t i c u l a r importance. F i n a l l y , the theoretical framework used i n t h i s study provided d i r e c t i o n to understand the relationships among patient care demands, family caregivers's appraisal of stress i n r e l a t i o n to patient care demands, and the outcomes of caregiving on the psychological well-being of the family caregiver. Use of Lazarus and Folkman's (1984) theory of str e s s , appraisal, and coping along with other nursing theories might improve the nurses effectiveness in carrying out the phases of the nursing process. Nurses should therefore use t h i s theoretical framework as a guide when assessing s t r e s s , coping, and adaptational outcomes among family caregivers of persons with advanced cancer. Recommendations for Future Research Findings of t h i s study stimulate suggestions for further research in a variety of areas. F i r s t , based on the study's 118 small sample s i z e and the use of nonrandom sampling procedures, t h i s study should be replicated to substantiate the findings that were i d e n t i f i e d . In order to ensure that varying l e v e l s of patient dependency are examined, further r e p l i c a t i o n of t h i s research should involve a comparison of cancer patients who are at varying stages of disease progression. Second, findings indicate that various patient care demands are associated with perceptions of d i s t r e s s among family caregivers of persons with advanced cancer. It i s however, d i f f i c u l t to know i f in f a c t caregivers' perceptions of d i s t r e s s were derived from t h e i r appraisal of the care demands/tasks required to manage various patient impairments or symptoms, or were derived from t h e i r appraisal of the underlying symptom i t s e l f . Further research using a q u a l i t a t i v e methodology may help to c l a r i f y the d i s t i n c t i o n between these two dimensions of caregiving. Third, family caregivers i n t h i s study experienced varying degrees of perceived d i s t r e s s in r e l a t i o n to various patient care demands. This v a r i a b i l i t y may have been influenced by the f a c t that there was considerable v a r i a b i l i t y in the length of time care-recipients had been i l l . Hence, caregivers' perceptions of d i s t r e s s may have been influenced by the rate of patient deterioration. It i s therefore recommended that further research that examine perceptions of stress among family caregivers attempt to control for the length of time care-recipients and caregivers have been confronted with the cancer disease. As 119 well, further research that examines the impact of the degree and rap i d i t y of patient deterioration on caregivers' perceptions of stress i s also recommended. F i n a l l y , while t h i s study did not d i r e c t l y measure coping processes among family caregivers, study findings suggest that perceptions of stress mediate coping processes, which i n turn a f f e c t adaptational outcomes. In order to understand these relationships more c l e a r l y , further research i s needed which examines the relationships between caregivers' perceptions of stress, the use of various coping strategies, and adaptational outcomes. Such research may by f r u i t f u l in generating knowledge about how caregivers cope in r e l a t i o n to perceived s t r e s s , and how e f f e c t i v e p a r t i c u l a r coping strategies are in managing or reducing perceptions of stress among family caregivers. In conclusion, t h i s study has demonstrated that the experience of caregiving i s related to perceptions of d i s t r e s s among family caregivers which in turn may be related to caregivers' psychological well—being. 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Subjective burden of husbands and wives as caregivers: A longitudinal study. The Gerontologist. 26. 260-266. Appendix A Caregiver (Stressor) Inventory (CSI) 126 CAREGIVER INVENTORY The purpose of t h i s questionnaire i s to determine the nature of care needs of your i l l family member and to determine how di s t r e s s i n g various care needs are for you the caregiver. The following sentence serves as an introduction to the questions below which are addressed to you as the caregiver. "I am mainly responsible for seeing that my i l l family member's li m i t a t i o n s are dealt with, and his/her care needs are met. My family member has the following physical functional a b i l i t i e s and care needs." INSTRUCTIQNS: For each category in Column I, please put a check ( ) on the l i n e of the statement that best describes your family member's care needs. Then, in Column II use the following rating scale to describe how d i s t r e s s f u l you perceive t h i s aspect of your family member's care needs. 0 — Never distresses me 1 — Very mildly distresses me — barely noticeable 2 - Somewhat distresses me 3 — Moderately distresses me 4 - Strongly distresses me 5 — Very strongly distresses me COLUMN COLUMN I II CATEGORY 1: BED CARE (please check one) Family member i s bedfast (never leaves bed) Family member i s t o t a l l y l i f t e d i n and out of bed (at least once a day) Family member gets up with assistance Family member gets i n and out of bed by him/her s e l f CATEGORY 2: TURNING IN BED Family member turns over in bed only with assistance Family member can turn over i n bed independently ... CATEGORY 3: WALKING Family member does not walk Family member walks only i f assisted by another person Family member walks only i f using cane or walker Family member walks independently I II CATEGORY 4: STAIR CLIMBING Family member cannot go up or down s t a i r s at a l l .. Family member goes up/down s t a i r s with assistance... Family member goes up/down s t a i r s independently .... Does not apply CATEGORY 5: WHEELCHAIR USE Family member needs assistance getting in/out of wheelchair Family member needs assistance pushing s e l f around when in wheelchair Family member s i t s i n wheelchair and pushes s e l f around Does not apply — Wheelchair i s not used CATEGORY 6: BEDSIDE COMMODE Family member uses a bedside commode Family member does not use a bedside commode CATEGORY 7: BOWEL ELIMINATION Family member i s unable to control his/her bowels and must be cleaned a f t e r accidents Family member uses the bedpan with assistance ....... Family member controls bowels, but bowel movements must be monitored for frequency, need for laxatives.. Family member controls/monitors own bowel function .. CATEGORY 8: URINARY ELIMINATION Family member i s unable to control his/her bladder function and must be cleaned a f t e r accidents . Family member uses the bedpan/urinal with assistance . Family member controls bladder function and requires no assistance........ Does not apply — Family member has a catheter CATEGORY 9: CATHETER CARE Family member has a foley (indwelling) catheter that must be monitored/cleaned/emptied Family member (male only) has an external catheter that must be applied/bag emptied Family member urinates without the use of a catheter.. 128 I II CATEGORY lO: BATHING Family member i s t o t a l l y bathed by another person .... Family member needs some assistance Family member bathes with no assistance required CATEGORY l i s SHAVING (MALE MEMBERS ONLY) Family member i s shaved by another person Family member shaves only with assistance ...... Family member shaves with no assistance required CATEGORY 12: CARE OF TEETH Family member's teeth are brushed by another person .. Family member brushes own teeth with assistance Family member brushes own teeth without assistance ... CATEGORY 13: DRESSING Family member i s dressed by another person .... Family member dresses s e l f only with assistance Family member dresses s e l f without assistance . CATEGORY 14: FOODS Family member eats foods that are s p e c i a l l y prepared such as s a l t - f r e e meals, pureed, etc Family member eats ordinary foods that do not require any special preparation CATEGORY 15: FEEDING Family member i s fed by another person Family member i s assisted to eat meal. Family member eats without assistance CATEGORY 16: EATING AT THE TABLE Family member i s served his/her meals elsewhere than at the family table Family member eats his/her meals at the family table . CATEGORY 17: TOILET CARE AT NIGHT Family member s o i l s or wets him/her s e l f and needs changing during the night _ Family member i s aided to the bathroom during the night Family member uses the urinal/bedpan with assistance.... Family member does not need assistance at night I II CATEGORY 18: TURNING AT NIGHT Family member i s turned by another person during the night Family member turns without assistance during the night. CATEGORY 19: CONFUSION Family member i s confused a l l of the time Family member i s confused some of the time Family member i s never confused CATEGORY 20: RECOGNITION Family member does not recognize caregiver at any time .. Family member does not recognize caregiver some of the time Family member recognizes caregiver a l l of the time _ CATEGORY 21: CONVERSING Family member does not carry on an understandable conversation at any time Family member does not carry on an understandable conversation some of the time Family member c a r r i e s on understandable conversation at a l l times CATEGORY 22: HEARING Family member i s deaf — not able to hear at a l l Family member hears i f spoken loudly to ....... Family member hears within normal l i m i t s CATEGORY 23: SEEING Family member i s blind Family member can see shadows only Family member cannot see well enough to read Family member can see within normal l i m i t s . CATEGORY 24: EYEGLASSES/HEARING AIDES Family member depends t o t a l l y on caregiver to put eyeglasses/hearing aide on Family member needs only some assistance with aides .... Family member does not need any assistance 130 : i I I CATEGORY 25s CRYING Family member c r i e s a l o t Family member does not cry a l o t CATEGORY 26: WORRYING Family member worries, f r e t s a l o t ....... Family member does not worry or f r e t a l o t CATEGORY 27: COMPLAINING Family member complains excessively Family member does not complain excessively CATEGORY 28: ARGUMENTIVE Family member i s argumentative . Family member in not argumentive CATEGORY 29: NEED FOR ATTENTION Family member demands attention and/or needs to be watched at a l l times Family member functions by him/her s e l f for short periods of time (1 hour) Family member functions by him/her s e l f f or long periods of time (3-4 hours) Family member functions by him/her s e l f for extended periods of time (over 4 hours) CATEGORY 30: MEDICATION ADMINISTRATION Family member's medications are given to him/her by another person Family member takes medications only with assistance .. Family member takes medications without assistance .... CATEGORY 31: SPECIAL TREATMENTS Family member receives special treatments such as dressing changes, urine tes t i n g , colostomy changes, oxygen, tube-feedings, etc. Please specify Family member receives no special treatments CATEGORY 32: VISITS TO THE DOCTOR Family member i s a s s i s t e d to the Doctors Family member goes to the p h y s i c i a n ' s o f f i c e or medical c l i n i c unaided and unaccompanied © 1985 C. Li n g r e n . May not be reproduced or d i s t r i b u t e d without w r i t t e n permission of the author. Reprinted and r e v i s e d with permission. 132 Appendix B Maslach Burnout Inventory (MBI) 133 HUMAN SERVICES SURVEY HOW OFTEN O never 1 a few times a year 2 once a month a few times a month 4 once a week 5 a few times a week 6 every day HOW STRONG 0 never 1 : very mi Id, b a r e l y n o t i c e a b l e moderate 7 major, very-strong HOW OFTEN HOW STRONG Statements: 1. I f e e l e m o t i o n a l l y drained from c a r e g i v i n g . 2. I f e e l used up at the end of the day. 3. I f e e l f a t i g u e d when I get up i n the morning and have to face another day of c a r e g i v i n g . 4. I can e a s i l y understand how my f a m i l y member f e e l s about t h i n g s . 5. I f e e l I t r e a t my f a m i l y member as i f he/she were an impersonal o b j e c t . 6. Working with my f a m i l y member a l l day i s r e a l l y a s t r a i n f o r me. 7. _ I deal very e f f e c t i v e l y with the problems of my f a m i l y member. 8. I f e e l burned out from my c a r e g i v i n g work. 9. I f e e l I'm p o s i t i v e l y i n f l u e n c i n g other people's l i v e s through my c a r e g i v i n g . 10. I've become more c a l l o u s towards my f a m i l y member s i n c e I began c a r e g i v i n g . 11. I worry tha t c a r e g i v i n g i s hardening me e m o t i o n a l l y . 12. I f e e l very e n e r g e t i c . 13. I f e e l very f r u s t r a t e d by my c a r e g i v i n g d u t i e s . 14. I f e e l I'm working too hard a t c a r e g i v i n g . 15. Working d i r e c t l y with my f a m i l y member puts to much s t r e s s on me. 16. I can e a s i l y c r e a t e a relaxed atmosphere with my f a m i l y member. 17. I f e e l e x h i l a r a t e d a f t e r working c l o s e l y with my f a m i l y member. 18. I have accomplished many worthwhile th i n g s i n c a r e g i v i n g . 19. I f e e l l i k e I'm a t the end of my rope. 20. While c a r e g i v i n g , I deal with emotional problems very e f f e c t i v e l y . 21. I f e e l my f a m i l y member blames me f o r some of h i s / h e r problems. (c) 1981 C o n s u l t i n g P s y c h o l o g i s t s Press, Inc. May not be reproduced or d i s t r i b u t e d without permission of the author. Reprinted and r e v i s e d with permission. Appendix C Caregiver and Patient Information Sheet CAREGIVER AND FAMILY MEMBER INFORMATION S H E E T B e l o w a r e a number o f q u e s t i o n s . P l e a s e i n d i c a t e y o u r a n s w e r t o e a c h q u e s t i o n i n t h e s p a c e p r o v i d e d . 1 . What i s y o u r a g e ? y e a r s . 2 . What i s y o u r s e x ? (1) M a l e (2) F e m a l e 3. What i s y o u r r e l a t i o n s h i p t o y o u r f a m i l y member? 4. What i s y o u r c u r r e n t e m p l o y m e n t s t a t u s ? (1) F u l l - t i m e h o u s e w i f e (2) R e t i r e d (3) E m p l o y e d p a r t - t i m e (4) E m p l o y e d f u l l - t i m e 5 . How l o n g h a v e y o u been t a k i n g c a r e o f y o u r f a m i l y member? m o n t h s . 6. How much o f y o u r t i m e p e r d a y ( h o u r s ) do y o u s p e n d p r o v i d i n g c a r e t o y o u r f a m i l y member? h o u r s . 7 . Do y o u h a v e a n y o f t h e f o l l o w i n g h e a l t h / m e d i c a l p r o b l e m s ? (1) A r t h r i t i s (2) H e a r t t r o u b l e (3) D i a b e t e s (4) B a c k s t r a i n / p a i n (5) H y p e r t e n s i o n (6) D e p r e s s i o n (7) O t h e r ( p l e a s e s p e c i f y ) (8) No h e a l t h / m e d i c a l p r o b l e m s 8. What i s y o u r f a m i l y m e m b e r ' s a g e ? y e a r s . 9. What i s y o u r f a m i l y m e m b e r ' s s e x ? (1) M a l e (2) F e m a l e 10. What i s y o u r f a m i l y m e m b e r ' s m e d i c a l d i a g n o s i s ? ( T y p e o f C a n c e r ) 11 . A b o u t how l o n g h a s y o u r f a m i l y member b e e n i l l w i t h c a n c e r ? m o n t h s / y e a r s 12. A r e t h e r e o t h e r p e o p l e i n v o l v e d i n p r o v i d i n g c a r e t o y o u a n d y o u r f a m i l y member? ( P l e a s e s p e c i f y ) 137 Appendix D Caregiver and Patient Information Letter 

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