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What needs of family caregivers can be met through the use of respite care? Courtney, Ellen Joyce 1986

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WHAT NEEDS OF FAMILY CAREGIVERS CAN BE MET THROUGH THE USE OF RESPITE CARE? By ELLEN JOYCE COURTNEY B.S.N., The University of British Columbia, 1978  A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE  i n  Nursing  in THE FACULTY OF GRADUATE STUDIES (The School of Nursing)  We accept this thesis as conforming to the reaufred standard  THE UNIVERSITY OF BRITISH COLUMBIA April 2 8 , 1 9 8 6 © Ellen Joyce Courtney, 1986  In p r e s e n t i n g requirements  this thesis  f o r an a d v a n c e d  of  British  it  freely available  agree t h a t for  Columbia,  I agree  that  the L i b r a r y  shall  and s t u d y .  I  f o r extensive  p u r p o s e s may  f u l f i l m e n t of the  degree a t the U n i v e r s i t y  f o r reference  permission  scholarly  in partial  for  that  copying  f i n a n c i a l gain  ^ I A A I / Y I / ^  The U n i v e r s i t y o f B r i t i s h 2075 Wesbrook P l a c e V a n c o u v e r , Canada V6T 1W5  of this  It is thesis  n o t be a l l o w e d w i t h o u t my  permission.  Department o f  thesis  be g r a n t e d by t h e h e a d o f my  or publication  shall  further  copying of t h i s  d e p a r t m e n t o r by h i s o r h e r r e p r e s e n t a t i v e s . understood  make  Columbia  written  ABSTRACT  The respite cere service has been offered to family caregivers who care for elderly relatives in the community. It has been assumed that respite care will meet the needs of family caregivers who use this service but there has been a dearth of evidence which clear ly supports this assumption. This study used a grounded theory approach to answer the following Question: Does respite care meet the needs of family caregivers who use this service? Seven family caregivers, who lived with their elderly female relatives and had used respite care at least once in the past, were interviewed. A needs framework, which was derived from the nine needs of the U.B.C. Model for Nursing (1980), provided structure for the interviews 8nd for data analysis. Data were collected and analyzed simultaneously using the process of continuous comparative analysis. The findings indicated that three major factors led family caregivers to use respite care: mental strain, physical strain, and the influences» of support systems. These factors contributed to the six unmet needs experienced by the caregivers prior to respite care use. The respite care experience was described by caregivers in terms of their satisfaction with the service, their use of respite care for rest period and vacation relief purposes, and their lack of responsibility for the care-receiver during the respite care period. All of the caregiver needs were found to be met during respite care use. Four major consequences of respite care use were identified: caregiver plans for multiple respite cere use, altered caregiver /cere-receiver relationships, increased use of ii  services and caregiver plans for the future. After respite care use, only three caregiver needs were met. In answer to the study question, respite care did meet the needs of family caregivers during the time of use but did not prolong the meeting of needs once caregiving was resumed. The deteriorating mental and physical health of the care-receiver appeared as a major theme throughout the caregivers' discussions. Caregivers were 8ware of the constant adjustments that had to be made in the care offered to the care-receivers in order to accommodate the deteriorations in the care-receivers' health. Caregivers found that continual support and assistance with these adjustments were necessary but these were not obtained from health care professionals or community services. Nurses should assist caregivers with these care adjustments by providing on-going support and by promoting flexible respite care and other community service options. Nursing education should prepare the practitioner to understand the caregiving experience from the caregivers' perspective and to understand the effects of caregiving and community service options including the respite care service on the needs of family caregivers. Future research should focus on providing further insight into the relationship between the respite care service and caregiver needs that can be used as a basis for planning effective nursing care that will support family caregivers.  iii  TABLE OF CONTENTS  ABSTRACT  i1  LIST OF TABLES  ix  ACKNOWLEDGEMENTS CHAPTER 1  x  INTRODUCTION TO THE STUDY  1  Background to the Study  2  Problem Statement  4  Purpose  4  Definition of Terms  4  Assumption of the Study . . . . . —  5  Limitations of the Stud/  5  Summary —  6  CHAPTER 2  CONCEPTUAL FRAMEWORK  7  Introduction  7  Needs Framework  7  Summery  —••  CHAPTER 3 REVIEW OF LITERATURE  " 12  Introduction  12  Identity of Family Caregivers  13  Identified Factors of the Fam ily Caregiver Role iv  14  Interpersonal Ties with Other Family Members  14  Caregiver Personal Tasks, Concerns and Difficulties  16  Direct Care of the Elderly Person  22  Caregiver Interactions with Health Care Services  23  Respite Care  28  Conclusions  32  CHAPTER 4  METHODOLOGY  34  Introduction  34  Rationale for Choosing a Qualitative, Grounded Theory Approach Credibility of the Grounded Theory Approach Sample Selection  34 35 36  Sample Selection Criterie  36  Sample Selection Procedure  38  Data Collection Procedure  40  Dat8 Analysis Procedure  41  Step 1: Creating Analytic Units  42  Step 2: Concept Formation  42  Step 3: Concept Development  43  Step 4: Concept Integration  43  Step 5: Production of Research Monograph Ethical Considerations  44 44  v  Summary  45  CHAPTER 5 PRESENTATION AND DISCUSSION OF THE RESEARCH FINDINGS .. 46 Introduction  46  Selective Characteristics of Family Caregivers Who Use Respite Care.... 46 Factors Leading to Respite Care Use  53  Mental Strain  54  Feelings of Responsibility  55  Lack of Freedom  62  Communication Difficulties Between Caregiver and Care-Receiver. 70 Negative Impact of Caregiving on Immediate Family Members Physical Strain  73 80  Altered Sleep Patterns  80  Deteriorating Health  82  Influences of Support Systems  84  Immediate Family Support  85  Support from Health Care Professionals  88  Support from Community Services  90  Respite Care Experience  94  Purposes for Respite Care Use  95  Caregiver Satisfaction with Respite Care  96  Lack of Responsibility  100 vi  Consequences of Respite Care Use  101  Plans for Multiple Respite Csre Use  101  Altered C8reg1ver/Care-Recetver Relationship  105  Increased Use of Services  109  Plans for the Future  Ill  Deteriorating Health of Care-Receiver  120  Decreasing Ability to Perform Activities of Daily Living Lack of Safety Awareness  121 124  Caregiver Needs  128  Period Prior to Respite Care Use  129  Respite Care Experience  133  Period Following Respite Care Use  133  Summary  137  CHAPTER 6 SUMMARY, CONCLUSIONS AND IMPLICATIONS FOR NURSING . . . . 139 Summary  139  Conclusions  142  Implications for Nursing Practice  143  Implications for Nursing Education  146  Implications for Nursing Research  148  REFERENCES  150  Vii  APPENDICES  155  Appendix A- Introductory Letter/Consent Form  155  Appendix B: Health Department A Cover Letter  157  Appendix C: Demographic Data Collection Tool  159  Appendix D: Sample Questions  160  Appendix E: Summary of Research Findings Appendix F: Summary of Caregiver Needs  viii  162 165  LIST OF TABLES  Table 1.  Summary of Caregiver Demographic Data  48  Table 2.  Summary of Care-Receiver Demographic Data  52  ix  ACKNOWLEDGEMENTS  I would like to acknowledge my professors, Rose Murakami and Helen Niskala, for their efforts and constructive feedback. In addition, I would like to acknowledge St. John Ambulance of Canada and the Nursing Division of the University of British Columbia Alumni Association for their financial support during the past two years. I would also like to extend my gratitude to the family caregivers who so willingly shared their experiences with me. Finally, I would like to thank my parents and grandparents who have provided continuous support and encouragement throughout this endeavor.  x  1  CHAPTER 1 INTRODUCTION TO THE STUDY Over 90SB of the Canadian elderly population (aged 65 years and older) reside in the community. While 2058 of these persons require a range of comprehensive services and assured continuity of care in order to be maintained in the community, about 80% of their home care is provided by family and friends (Government of Canada, 1982; Shanas, 1979a&b). Several studies have indicated that family members caring for elderly relatives often experience 8n accumulation of personal, social and economic pressures which will ultimately require them to institutionalize their elderly relative on a permanent basis (Brody, 1977; Kane & Kane, 1980;Smallegan, 1981). Inorderto indefinitely postpone this permanent Institutionalization, researchers acknowledge the need to provide support to family caregivers (Cantor, 1983; Kane & Kane, 1980; Shanas, 1979; Soldo & Myllyluoma, 1983). This support is usually provided by community care programs which offer services to family caregivers for specific time periods during the day-time hours. If a 24-hour support service is required, respite care m8y be an option available to family caregivers. It must be noted, however, that since the distribution and provision of health services varies considerably between and within the provinces of Canada, not all of these services, particularly respite care, are always available to family caregivers (Government of Canada, 1982). Respite care programs, In the form of intermittent or temporary institutionalization of the elderly, have been developed on the assumption that they will provide rest snd relief for families by offering a complete break from the responsibilities of caregiving (Lear et al., 1969; MacCourt & Southam, 1983;  2  Robertson, Griffiths, &Gosin, 1977). These programs are assumed to be advantageous when families want a vacation, want to rest at home, or require the hospitalization of one of their members (Griffiths & Cosin, 1976; Koff, 1974; M8cCourt&Southam, 1983). In addition, respite care can be used to provide medical screening and services to those elderly participants who are unable to pursue their medical concerns in the community (British Columbia Ministry of Health, 1980; MacCourt & Southam, 1983). Although there is a limited number of respite care beds available in Canada, respite beds are utilized by individuals for approximately 2-6 weeks at one time (Government of Canada, 1982). These utilizations may be as frequent as once a month or in some facilities occur only on a yearly basis (British Columbia Ministry of Health, 1980; DeLargy & Belf, 1957; MacCourt & Southam, 1983; Robertson et al., 1977). In spite of the above description of the respite care service, a review of the literature has disclosed only one piece of research which minimally addresses the experiences of families utilizing this service (Foundation for Long Term Care, 1983). The need for more research has been identified by Clark and Rakowski (1983). Areas which require specific attention include: 1) the effects of respite care use on the needs of families, 2) the short-and long-term effects of the respite care service on family caregivers, and 3) the effects of respite care use on care-receivers. Background to the Study In Canada, local health councils, government task forces and multidisciplinary planning groups often have mandates to develop plans for the total service package for the elderly (Mantle, 1981). Since these groups ultimately make decisions for the Inclusion  3  or exclusion of health care services into this package, information must be available to them In the form of research findings for each of the services proposed. Unfortunately, there is no research evidence to-date which clearly establishes respite care as a support service to the public. Although respite care is offered in Canada to families who care for elderly relatives in the community, it is not known whether this service actually meets the short- and long-term needs of the caregivers who utilize this service (Government of Canada, 1982). Health care professionals involved with respite care, at the community and Institutional levels, are also affected by the lack of available information regarding respite care and the needs of family caregivers. This is particularly true for nurses since they are concerned with the psychological, physical and social needs of their clients. In many instances, nurses are also responsible for the coordination of the numerous health and social service options available to the elderly. Without available research pertaining to respite care and the needs of family caregivers who utilize this service, nurses, both in the community and institutional settings, do not know whether they are presently providing accurate information and care to the people who use or potentially could use respite care (Mantle, 1981). Ultimately, this situation will have a detrimental effect on the family caregivers If their individual needs are not met. This study is therefore timely. Information is needed to determine whether respite care is actually a support service which will help to meet the needs of family caregivers and their elderly relatives.  4  Problem Statement Family caregivers play a major role in maintaining their elderly relatives in the community. These caregivers, however, often experience severe personal, social and economic pressures, it is assumed that support services will minimize these pressures and will also help caregivers to meet their specific needs. Although support services are available in both the community and institutional settings, few studies have actually addressed the relationship of caregiver needs with the services offered. The literature available for respite care is no exception. Respite care is assumed to be of value to family caregivers but there is no research evidence, to-date, which clearly supports or refutes this assumption. Therefore, this study addresses the following question: Does respite care meet the needs of family caregivers who use this service? Purpose This study will identify the needs of family caregivers which can be met through the use of respite care. The objectives of this study are to: 1) identify selective characteristics of family caregivers who use respite care, 2) identify those factors which influence the decision to use respite care, 3) describe the family caregivers' experience during the time of respite care use,and 4) identify the consequences of respite care use for the family caregivers. Definition of Terms Respite Care (Service): intermittent or temporary institutionalization of an elderly  5  individual in order to relieve his/her family caregiver(s) from the responsibilities of caregiving at home ("Hospitals should," 1981, p.60). Elderly Relative: an individual over the age of 65 years who, in order to be maintained in the community, lives with and receives care from an adult son, daughter, or grandchild (and his/her immediate family). Family Caregiver(s): the family member(s) (adult son, daughter, or grandchild and/or his/her spouse and/or children) who can be identified, by the family, as the person(s) who is (are) primarily responsible for providing care to the elderly relative (Archbold, 1982a, pp. 12-13). Care: provision of social, emotional and physical support to the elderly relative which enables this individual to remain in the family home (Archbold, 1982b, p.6). Needs: the fundamental requirements for survival and growth of the behavioral system (individualXU.B.C. Model for Nursing, 1980, p.7). Assumption of the Study It is assumed that: 1) The elderly relatives, in this study, live with and receive care from their family members in order to be maintained in the community. Limitations of the Study The limitations of this study are as follows: 1) The sample size is limited due to the time restrictions placed on this'study. This may interfere with the full saturation of concepts. 2) Interview results cannot be generalized to caregiver populations other than  6  those outlined in this stud/. 3) The retrospective nature of the study will not provide direct observation of participant behaviors but instead will have to rely fully on the verbal accounts of the selected family caregivers. Summary This chapter showed that there has been a lack of research evidence to-date which supports or refutes the assumption that respite care programs in Canada meet the needs of family caregivers. Thus, as evidenced in this chapter, the purpose of the study will be to identify the needs of family caregivers which can be met through the use of respite care.  7  CHAPTER 2 CONCEPTUAL FRAMEWORK This chapter presents the conceptual framework which guides this stud/. Since nursing is concerned with the wholeness or totality of its' clients, it is necessary to use a conceptual framework which is congruent with nursings' view. Thus, a needs framework has been selected to enable the researcher to examine the wholeness of family caregivers as persons. The framework provides structure for the formulation of interview questions used in this study's data collection tool and also provides direction for data analysis. Needs Framework Needs are defined, in this study, as the fundamental requirements that an individual must possess in order to survive or function within the limits society considers normal. In order to fully understand this definition of needs, which is partially derived from the U.B.C. Model for Nursing (1980), other definitions and conceptualizations of needs will be analyzed. According to the U.B.C. Model for Nursing (1980), basic human needs are the "fundamental requirement(s) for survival and growth of the behavioral system" (the individual) (p.7). This definition of needs is supported by M&slow (1968) in his widely-recognized needs classification. In his classification, Maslow states that needs are necessities or requirements for survival. Both, Murray ami Lewin, in their studies, have identified needs in a slightly different context. They perceive needs as being forces or states in the personality or brain (Lewin, 1971; Murray, 1967). Needs have also been viewed as values (Kron,  8  1971; Lee, 1948.). Kron (1971) specifically states that needs are "that which the individual must have in order to survive or function within the limits that society considers normal" (p. 11). in addition to the many definitions of needs available, there are also numerous needs classifications (Diekelmann, Bennett, Shauger.&Vickerman, 1980;Helson, 1964; Maslow, 1968; Murray, 1967; Poduska, 1980; U.B.C. Model for Nursing, 1980). Maslow (1968) classifies needs In terms of a hierarchy of relative urgency for survival. This classification, in order of urgency, includes: physiological needs, safety and security needs, love and belongingness needs, self-esteem needs and self-actualization needs. Murray (1967), on the other hand, identifies 20 manifest needs which he classifies into two broad categories; primary (viscerogenic) snd secondary (psychogenic). According to Diekelmann et al. (1980), needs are physical, emotional and social in nature. In this classification, the physical needs include the need for sustenance in the form of food, water and oxygen, the need for elimination of waste products from the body, the need for rest and the need for protection of the body. Emotional needs include the needs for love, self-esteem, and productivity. An example of a social need is the need for belongingness. Although the classifications mentioned above address physiological and psychological needs on a separate basis and in the case of Diekelmann et al. (1980) there is a further separation into a social classification of needs, a growing emphasis, by theorists, is now placed on all needs having physiological, psychological and social components (Helson, 1964; Poduska, 1980). For example, Poduska (1980)  9  conceptualizes that when dealing with physiological needs, lack of need satisfaction can be a cwisequence of not having satisfied the psychological overtones associated with these needs. This conceptualization is supported by Helson (1964). The U.B.C. Model for Nursing (1980) combines many aspects of the above classifications and articulates needs in a way that provides a comprehensive view of the Individual. Therefore, It will be used as the framework for this study. The U.B.C. Model for Nursing, in it's classification of needs, has conceptualized 9 major needs. They are: 1) the need for mastery, 2) the need for love, belongingness and dependence, 3) the need for respect of self by self and others, 4) the need for stimulation of the senses (ie. hearing, vision, smell, touch and taste), 5) the need for safety and security, 6) the need for collection and removal of accumulated wastes, 7) the need for balance between production and utilization of energy, 8) the need for oxygen, and 9) the need for intake of food and fluid; nourishment (p. 10). It is implicitly assumed that these needs have physiological, psychological and social components. Although It is not the intent of this review to provide an in-depth analysis of the U.B.C. Model for Nursing (1980), this model makes several assumptions about individuals which require discussion here. They are: 1) An Individual constantly strives to satisfy each need (the 9 needs are mentioned above) by using a range of coping behaviors.... 2) An individual constantly seeks harmony and balance when striving to satisfy multiple and co-existing needs  (and)  3) An individual's coping behaviors are organized Into repetitive, predictable  to  patterns which become the individual's characteristic way of attempting to satisfy ... needs (p.2). These assumptions are supported by other theorists. According to Murray (1967) , needs usually give rise to certain courses of overt behavior or behavioral trends. Maslow (1968) takes this further when he states that because needs act as motivators for behavior, the motivators as well as the resulting behavior may be observable (overt) or may be imperceptible (covert). For example, the human being requires oxygen to survive. As a result, the act of respiration functions to meet the body's need for oxygen. Motivation for respiration is therefore the need for oxygen. Two other general assumptions of the U.B.C. Model for Nursing (1980) ere important to note here: 1) When a critical period is being experienced, an individual's repertoire of coping behaviors may be or may become unsuitable to permit satisfaction of one or more of the... needs... 2) When coping behaviors do not permit satisfaction of... needs the individual encounters a threat to growth and/or survival (p.2). Peplau (1952) and Maslow (1968) support these assumptions. According to Peplau (1952), if a need is not met (satisfied), this indicates that either the behavior aimed at the need is not effective or the need may be unrecognized by the individual due to all behavior being directed towards another need which is strong or uppermost. Maslow (1968) reinforces the latter aspect of Peplau's statement by claiming that under certain free choice situations a specific need may be preferred by the individual over other  11  satisfactions. For example, the person who is completely engrossed with meeting his self-actualization need may delay eating or obtaining sufficient fluid Intake which does not meet the need for intake of food and fluid. It is interesting to note that this conceptualization by Maslow is contradictory to his hierarchical needs theory. According to his general theory, the lower-order physiological need for food and fluid must be satisfied before the higher-order self-actualization need can be addressed. Summary Oiven the support in the literature for the U.B.C. Model for Nursing's approach to needs, the appropriateness of this framework for the present stud/ is evident. Therefore, this stud/ uses the U.B.C. Model for Nursing as a framework for data collection and analysis with the intention of identifying the needs of family caregivers which can be met through the use of respite care.  12  CHAPTER 3 REYIEW OF LITERATURE This chapter examines the literature that is pertinent to the four objectives of this stud/. Although there are numerous studies which have investigated the characteristics of family caregivers and the impact of the caregiver role upon family members, there are few studies available which link the family caregiver experiences with the use of community care services. In other words, the factors which Influence the family caregivers to use community care services, the experiences of family caregivers with these services and the consequences of the use of community care services for family caregivers are not clearly addressed In the literature. Specifically, research pertaining to the respite care service is limited. There are only two studies identified which have investigated the respite care service (Lear et al., 1969; Robertson et al., 1977) and only one stud/ which has minimally examined family caregiver experiences with this service (Foundation for Long Term Care, 1983). Although It Is evident that the research pertaining to the above topics has not been conclusive and some of the studies tend to refute the findings of others, it is important to discuss this research in relation to the purpose of this stud/. Four major areas will be addressed in this literature review. In the first section, family caregivers will be identified. Section two will review the factors which can be associated with the family caregiver role. Three subsections will be presented as follows: 1) interpersonal ties with other family members, 2) caregiver personal tasks, concerns and difficulties, and 3) direct care of the elderly person. The third section will provide a  13  discussion of family caregiver interactions with health care services. Section four will examine the respite care service offered to family caregivers. The final section of this chapter will present conclusions drawn from the literature reviewed. Identity of Family Caregivers Canadian statistics are not available which specifically identify the number and type of family members who care for the elderly in the community. However, genera) research findings give an indication as to who comprise the roles of family caregivers. According to Johnson (1983), who interviewed 167 families between 1978 and 1981, family support is extended most often by one family member at a time. In serial order, the spouse functions as the primary caregiver; in the absence of the spouse, a child assumes the role; and in the absence of offspring, another [family] member is responsible (Johnson, 1983, p.380). Shanas identified this phenomenon as the "principle of substitution" in a 1975 U.S. national survey which located approximately 16,000 noninstitutionalized persons aged 65 years and older. According to Shanas, family members are available in serial order so that if one individual is not available to help another will step in (1979b). Caregiving is considered to be women's work (Archbold, 1982a; Brody, 1977). In general, this responsibility falls to the wife, the daughter, or daughter- in-law of the elderly person (Archbold, 1982a; Brody, 1977; Shanas 1979a). An unmarried daughter is a more likely care provider than her married sister (Soldo & Myllyluoma, 1983). The above discussion has focused on one family member assuming the role of primary caregiver for the elderly person. However, Archbold has found in en exploratory  14  study of 30 Caucasian women (1982a) that, even though each family usually has one identified primary caregiver, caregiving is a family endeavor which affects all members. Identified Factors of the Family Caregiver Role Several studies have identified factors which pertain to the family caregiver role (Archbold, 1980,1982b; Brocklehurst, Morris, Andrews, Richards, &Laycock, 1981; Cantor, 1983; Johnson 1983; Johnson&Cata1ano, 1983; Marcus & Jaeger, 1984; Robinson, 1983; Sainsbury & Or8d, 1970; Soldo & Myllyluoma, 1983; Worchester & Quayhagen, 1983). Although the caregiver role encompasses a large spectrum of activities, factors associated with caregiving seem to fall into three broad areas: 1) Interpersonal ties with other family members, 2) caregiver personal tasks, concerns and difficulties, and 3) direct care of the elderly person (Clark & Rakowski, 1983). Each of these areas will be explored separately in this section. Interpersonal Ties with Other Family Members  There is consensus in the literature, based on caregivers' reports, that two particularly difficult tasks for caregivers to work through include obtaining a balance between caring for the elderly person and other family members (especially children) and managing feelings toward other family members who do not regularly help (Archbold, 1980,1982b; Cantor, 1983; Clark & Rakowski, 1983; Soldo & Myllyluoma, 1983). In a 1983 study, Cantor used Liechter's (1967) familism scale to quantitatively measure 111 caregivers' attitudes toward their families. Of the 111 caregivers, 37 were spouses, 40 were children and 34 were other relatives, friends/neighbours. Cantor found that the more caregivers feel that they have a "responsibility towards other family  15  members and that involvement in and sense of family is a positive value, the more likely they are to feel strain" (p. 602). This Is particularly true for the "sandwich generation" (the population approximately 40-60 years of age) which finds itself challenged to cope simultaneously with the demands of the younger family members (children, grandchildren) end the elderly person (Brody, 1977; Robinson & Thurnher, 1979; Soldo &Myllyluoma, 1983). Although Schmidt (1970). Silverstone (1978) and Steinman (1979) do not provide research evidence to support their ideas, they assume that family interactional patterns which predate the caregiver/care-receiver roles will usually determine how the family will function. According to Schmidt (1970), in some families, adult-to adult relationships are never fully achieved between the generations no matter how old the offspring grow. For example, a 60-ye8r old daughter may be intimidated by her 83-year old mother ami look to her for direction even though the mother is incapacitated in her mental functioning. This family pattern is assumed to provide strain for the daughter end other family members. Another dysfunctional family pattern, according to Schmidt (1970), involves the continual bickering and jockeying for position among siblings. Unresolved feelings around who received attention or consideration 8s children influence the siblings' reactions to one another and may lead to proving themselves as "the best child". It must be noted that this dysfunctional family pattern is based on assumptions rather than on research findings. In a 1980 study, Archbold used a focused Interview approach to Investigate the key  16  problems faced by six elderly stroke victims and their middle-aged family caregivers. Her findings showed that, in most of the families, the decision-making within the families as to who should assume the caregiving role occurred "automatically". The sibling who wes viewed, by the family, as being the oldest, the most responsible, the single one, or the closest one to the elderly relative was usually placed in the caregiver position. Three caregivers, In Archboltfs study, expressed feelings of resentment related to the "inequality of workload" and "loss of freedom" compared to their siblings. Although the relatively small sample size of Archboltfs study limits the generalizations that can be drawn from the conclusions, the findings mentioned above have been supported by Brody (1970). Brody (1970) found, In a study of 48 caregivers, that many of the caregivers experienced resentment toward siblings whom they perceived as not bearing their share of the burden for sick or disabled parents. Often the caregiver child, who gave so much time and attention to the parent, was also the person who received the bulk of the parent's anger and criticism, while the absent siblings received the praise (p.77). This subsection discussed the caregiver tasks of managing feelings toward other family members and obtaining a balance between caring for the elderly person and other members of the family. rarfiQlvfir Pfirsnnal Taslcs frmrftrnsanri DifficultiRS  In this subsection, ths factors of burden, strain, personal time and freedom, labour force involvement, sleep disturbance and health will be discussed. To begin, several studies have found that family members who care for elderly relatives In their own homes  17  often experience feelings of burden end strain which may leave them physically and emotionally drained (Marcus & Jaeger, 1984; Robinson &Thurnner, 1979). In a quantitative study by Cantor (1983), 111 primary caregivers were interviewed, of which 40 were children of the care-receivers. This study found that strain was experienced emotionally, physically and financially by the children caregivers. On a 3-point measure of strain, emotional strain ranked first, physical strain second and financial strain ranked lowest in importance. Zarit, Reever, and Bach-Peterson measured the degree of burden experienced by family caregivers in a 1980 study. The investigators administered a 29-item self-report Inventory to 29 primary caregivers who provided care to elderly parents with senile dementia The selection of questions for this self-report inventory was based on problem areas that caregivers, from prior studies and from the author's clinical experiences, had identified as producing burden. It was found by Zarit et al. that feelings of burden were inversely related to caregiver satisfaction and willingness to assume the caregiver role. One factor which tends to increase feelings of burden for caregivers is the lack of personal time that they experience (Hirschfeld, 1983;Sainsbury&6rad, 1970;Sanford, 1975). The findings of the Cantor stud/ (1983), which used a 3-point scale to analyze the responses of 111 primary caregivers towards eight common areas of personal time activity, are es follows: The findings suggest that caregivers forced to adjust their lives to encompass the demands of a dependent older person are more likely to give up those things which  18  have some elasticity and are more marginal to personal or family equilibrium and survival (p.600). Thus, the most severe impact of caregiving is reported in the areas of having free time for oneself, being able to socialize with friends, taking vacations, and having leisure time pursuits. Archbold's qualitative studies (1980,1982b) support these findings as she has also found that ft Is common for the activities deemed meaningful by the caregiver to be given up in deference to the care of the parent. In a 1980 study, four out of six caregivers reported to Archbold that they were no longer able to engage in spur-of-the-moment activities such as shopping with a friend All of the caregivers claimed that they experienced a decreased Involvement In regular group activities such as church or volunteer activities. In a later phenomenological study (1982b) involving 30 caregivers, Archbold found that church-going activities did not decrease as was evidenced in the 1980 study. Those caregivers indicated that they did not feel ambivalent about leaving the parent to attend church. Although the two Archbold studies showed conflicting results in the area of church-going activities (which may be due to the relatively small sample sizes of the two studies), they indicated strongly that the over-all decreased involvement in social activities led to social isolation among the caregivers. Limitations of freedom for caregivers has also been found to extend into the future since moves, retirement plans and vacations are all affected (Archbold, 1982b; Marcus & Jaeger, 1984). One caregiver in Archbold's study (1982b) stated We have no freedom. We had to give up the move to our house in the country... For  19  years we have been planning to move as soon as our youngest left. Now we are panicked. We built that house for our retirement—she could live for another 10 years (p.20). In Marcus and Jaeger's exploratory-descriptive study of 47 Canadian caregivers, 448 of the caregivers claimed that they had no thoughts of the future- - "I live from day to day" (1984, p.37). Trying not to think about the future was mentioned by more than half of the 30 women Interviewed but by only one-quarter of the men. As a result of the differences found between men and women, Marcus and Jaeger queried whether women tend to live in the "here and now" whereas men tend to look toward the future. This proposed relationship, however, was not researched in the Marcus and Jaeger study. Several studies have found that labour force involvement is an issue for many caregivers (Archbold, 1982b;Brock1ehurstetal., 1981; Cantor, 1983; Sainsbury & Grad, 1970; Soldo & Myllyluoma, 1983). In a study by Soldo and Myllyluoma (1983), figures for a subsample of 5,170 adult children/children-in-law caregivers drawn from the 1976 Survey of Income and Education (SIE), showed that although male caregivers were more likely than their female counterparts to work either full-time or part-time, only 1430 out of a total of 4,440 males were actually working. Large proportions of caregivers outside the work force reported that they were "unable" to work either for reasons of their own health or family responsibilities. Data from this study, however, did not provide sufficient detail to actually test the hypothesis that caregiving precipitates withdrawal from the labour force. Research findings from the Sainsbury and Grad study (1970) showed that out of 119 households, 16 caregivers (14S) had their income  20  reduced by 10X as an outcome of a partial withdrawal from the labour force. In contrast, Cantor (1983), using a 3-point scale to analyze the responses of 111 primary caregivers toward labour force involvement, found that caregiving had only a minimal effect on the ability to keep a job. The ability to function on the job, however, was attributed to the necessity to keep a job. In her parent-caring phenomenological study of 30 Caucasian women, Archbold (1982b) found that women in positions of higher status are 8ble, by virtue of their more flexible work schedules, to incorporate caregiving activities into their lives with minimal disruption to their work. These women are also clear in their own minds as to the Importance of their career commitment and thus are able to delegate parentcaring activities with little conflict. In contrast, those women whose occupational roles are not career-oriented become torn between their work ami their role es a caregiver. Some resign from their jobs to devote their time fully to their elderly parent. Sleep disturbance is 8 concern for many caregivers (Brocklehurst et al., 1981; Sanford, 1975). In 1975, Sanford found that 31 out of 50 caregivers were awakened regularly at night by the elderly relative for various reasons. Five caregivers poorly tolerated the interruptions. The causes identified for sleep disturbance were the care-receivers' night-wandering and the care-receivers' need to be toileted. A study by Brocklehurst et al. in 1981 supported Sanfonfs findings. Several studies address the health of caregivers (Brocklehurst et al., 1981; Johnson, 1983; Marcus & Jaeger, 198-4; Robinson, 1983). Brocklehurst et al., in a 1981 study, looked at the health of 97 family caregivers who provided care to elderly  21  stroke patients. These investigators interviewed 22 male and 75 female caregivers of which 8 (36*) of the males and 44 (59*) of the females were under 65 years of age. At the time of the care-receiver's stroke, 53* of the chief caregivers reported no health problems, 33* were currently receiving treatment for one or more conditions and the remainder had some minor impairment such as partial deafness or sightedness. All were Independent. However, In the course of one year of caregiving, the number of chief caregivers who regarded their health as poor Increased from 10 to 28 caregivers. The proportion of chief caregivers receiving medical treatment increased from 33* at the first visit (four to six weeks) following the stroke of the care-receiver to 36* by the sixth month and 40* of all chief caregivers by the twelfth month. Some caregivers were known to be on tranquillizers and anti-depressant medication. Results from Marcus and Jaeger's study (1984) showed a less severe impact of caregiving on caregiver health. Fifty-four caregivers were asked to rate their own health as poor, varies or good. Fifty-seven percent rated their health as "good", 28* as "varies", and 15* as "poor". Neither age nor sex were significantly related to this self rating. Robinson (1983), in her findings, was unable to find a significant decline in the health of 85 caregivers who provided care to elderly persons who had recently been hospitalized for hip surgery or heart conditions. The 85 caregivers included 32 spouses, 18 daughters or daughter-in-laws, 9 sons, 12 other relatives, and 14 friends/ neighbours. Each caregiver was interviewed using a 13-item Caregiver Strain Index. The three items on the index which related to health were obtained from an analysis of the  22  literature, it must be noted that the caregivers were interviewed only two months after the elderly person returned home from the hospital. It is not known whether these results would be supported if these caregivers were studied after a prolonged period of caregiving. As evidenced in the above discussion, caregiving often leads to caregiver feelings of burden and strain. It restricts the caregivers' personal time and freedom particularly in the areas of socializing with friends, taking vacations, pursuing leisure time activities, and participating in the labour force. Plans for the future are also found to be restricted by the caregiving situation. I n addition, caregiving may lead to sleep disturbances and alterations in the health of caregivers. Direct Care of the Elderly Person Several aspects of providing direct care to the elderly person are of particular concern for caregivers (Brocklehurst et al., 1981; Sanford, 1975). In Sanforrfs study (1975), 21 caregivers out of a total of 50 interviewed found that fecal incontinence was a frequent problem which was poorly tolerated. Urinary incontinence, on the other hand, also occurred frequently but was well tolerated by 40 caregivers. Brocklehurst et al. (1981) had similar results in that urinary incontinence was a problem for only 5 out of 62 caregivers. General immobility of care-receivers was also a major concern for the caregivers in the above studies. Inability to get in and out of bed and on and off the commode with resultant need for the caregivers to frequently lift the care-receivers was particularly bothersome for most caregivers (Brocklehurst et al., 1981; Sanford, 1975). Bathing and dressing procedures, on the other hand, were well tolerated by 93* of the caregivers  23  in both the Brocklehurst et al. and Sanford studies. Archbold (1982b) found, in her phenomenological study of 30 Caucasian women, that physical tasks become the focal points of the caregivers' and care-receivers' day. One caregiver stated I can't leave the house until he's had a bowel movement. I'm sorry to talk about it, but it has become very important. If It Is late, It throws off my whole cay (p. 15). Adherence to the tight schedule required for meeting the care-receiver's physical aspects of care (food, rest, hygiene, exercise, and elimination) precludes attention to the care-receiver's psychological and social well-being. This subsection discussed the concerns of caregivers regarding the direct care of the elderly persons. These concerns included: care-receiver fecal incontinence and general immobility, and physical tasks associated with caregiving. Caregiver Interactions with Health Care Services Caregiver interactions with health care services vary considerably between individuals (Johnson & Werner, 1982;Kraus, 1982; YorkfcCalsyn,1977). Although several studies indicate that many caregivers require some form of service support in order to maintain their elderly relatives in tin community, there is no conclusive evidence that the use of community services actually meets the needs of family caregivers or postpones permanent institutionalization of the cere-receivers (Archbold, 1980; Brody, 1977; Government of Canada, 1982;Smallegan, 1981; York&Calsyn, 1977). On the other hand, there appears to be a consensus in the literature that a lack of service use may lead to elder abuse (Anderson, 1981; Beck, 1983; Eastman & Sutton, 1982).  24  To begin our discussion, several studies indicate that caregivers require some form of support in order to maintain their elderly relatives in the community (Archbold, 1980; Johnson&Catalano, 1983;Kraus, 1984; Marcus & Jaeger, 1984). InArchbold's study of 30 Caucasian women (1982a), caregivers indicate that relief from some careproviding activities and accurate and accessible information and referral for service needs as they arise are necessary to reduce the negative Impact of caregiving on their lives. In keeping with these findings, it is recognized by the Government of Canada (1982) that there is a need to coordinate, communicate and integrate the community care services which are presently offered to the elderly and their families. Although documentation is available regarding many of these services (for example, day care, home care, foster care and respite care), the relationship between the actual needs of family caregivers and the available community health services hasrotbeen addressed in the literature (Brody, 1977; Department of Health and Welfare Canada, 1982; Government of Canada, 1982; Kane & Kane, 1980; MacCourt & Southern, 1983; Sands & Suzuki, 1983; Steinhauer, 1982) . Thus, at this time, it is difficult to know exactly which services are of benefit to the elderly snd their families. Although many studies have acknowledged the need to provide support to family caregivers so that permanent institutionalization of the elderly can be postponed indefinitely, permanent institutionalization remains a common outcome of the caregiver experience (Cantor, 1983; Kane & Kane, 1980; Shanas, 1979; Soldo&My11yluoma, 1983) . However, evidence has shown that placing an elderly individual in an institution is the last rather than the first resort of families. At that point, families have usually  25  exhausted all other alternatives (Brafy, 1977; Kane & Kane, 1980;Smallegan, 1981). Little Is known about the actual events preceeding the decision to institutionalize the elderly relative. In several quantitative studies which have sample sizes ranging from 31 to 5,170 caregivers, strain of such severity as to constitute a threat to either the physical or emotional health of caregivers or both has been identified as a contributing factor towards Institutionalization (Isaacs, 1971; Kane & Kane, 1980; Kraus, 1984; McKay etal., 1983; Soldo & Myllyluoma, 1983). On the other hand, Worcester and Quayhagen (1983), who Interviewed 29 past caregivers using an open-ended question format, found that for 13 of these caregivers an acute illness of the care-receiver prompted institutionalization. Two caregivers who were reluctant to admit their ill relatives into an institution reported that their physicians would not continue medical supervision if the care-receivers remained in their homes. Thus, they were forced to institutionalize their relatives. Smallegan (1981) looked for a correlation between admission into an institution and the need for help with the activities of daily living, the need for 24-hour supervision and the disruption of family life. No relationship was found. Smallegan, however, noted that her sample size was 19 and could limit the findings of her pilot study. Several studies have looked at the alternatives caregivers have used before institutionalizing their elderly relatives (Johnson & Werner, 1982; Kraus, 1984; York & Calsyn, 1977). York and Calsyn (1977) used a Family Interview (a 45-60 minute instrument composed of both open-ended and closed-ended questions) to investigate 76 family caregivers. All but 12 of these caregivers were children of nursing home patients.  26  These investigators found that 28* of the families were aware of adult day care but none utilized this service. Ninety-three percent of the families were aware of visiting nurses but only 20* used this service. Seventy-four percent of the families were aware of public health clinics but only 3* of the sample indicated that they used public health clinics. Reasons for the limited use of alternatives were not studied. These findings have been supported by Johnson and Werner (1982). Their study also revealed that families did not utilize alternatives to institutional care even though many of the alternative services were known to a majority of the families. Johnson and Werner used a questionnaire comprised of portions of the York and Calsyn instrument. They found that 55 caregiver respondents (primarily women, daughters of the elderly person and married) used an average of 1.1 alternatives before institutionalization. Only 24 (44*) of the families had tried any alternatives and few (28*) had tried more than one. Again, the reasons for the limited use of alternatives were not studied. It must be noted that the Family Interview Instrument devised by York and Calysn (1977) does not appear to have undergone construct validity testing. If such testing did occur, these results were not reported by York and Calysn in their study. Since this Instrument was also used by Johnson and Werner in their 1982 study, it is important to have such data in order to fully analyze the results from both of these studies. Contrary to the results obtained by York and Calysn (1977) and Johnson and Werner (1982), Kraus in a 1984 study found that the care-receivers utilized community services. A structured interview format was used to investigate a group of 14 Institutionalized persons for whom the relative said providing care had been very  27  difficult. This investigator found that nine or 6458 of the institutionalized persons had utilized services such as home care, which was offered by the community and the Victorian Order of Nurses, and private paid help prior to admission to the institution. For 41 persons still at home, who were referred to the stud/ by community support services, 8358 were currently using services. However, among the 14 persons still at home who came to the attention of the study as a result of newspaper advertisements or through their family physicians, only 4358 had used such services. These results indicate that community support services may at least delay the institutionalization of many elderly persons. As mentioned earlier, it is assumed that the potential for elder abuse occurs when caregivers do not receive support from social service or home health agencies (Beck, 1983) . Accurate data on the extent end nature of this elder abuse, however, are scarce (Anderson, 1981; Beck, 1983; Eastman & Sutton, 1982; Salend, Kane, Satz, & Pynoos, 1984) . Estimates of the number of elderly who are maltreated by families In the United States vary from 0.5 to 2.5 million (Salend et al., 1984). In a review of the research available for elder abuse, Salend et al. (1984), found that typically, the abused elderly person is depicted as age 75 or over, female and dependent on others for care and protection. Eastman and Sutton (1982), in a review of American research, found that frequently, the attacker is an unmarried daughter living with her widowed mother— the single daughter ami aging mother syndrome. In summary, this section discussed caregiver interactions with health care services. It was noted that the amount of community services used by the caregivers  28  varied between individuals. Although 8 relationship between the use of community services and permanent institutionalization was sought by several researchers, the evidence was conflicting and did not identify the actual services which may postpone institutionalization. Elder abuse, although not substantiated with research, was assumed to be linked with a lack of community service support Respite Care Respite care programs, in the form of intermittent or temporary institutionalization of the elderly, have been developed on the assumption that they will provide rest and relief for families by offering a complete break from the responsibilities of caregiving (British Columbia Ministry of Health, 1980; Delargy & Belf, 1957; Ellis & Wilson, 1983; Foundation for Long Term Care, 1983; MacCourt & Southam, 1983). These programs are assumed to be advantageous when families went a vacation, want to rest at home, or require the hospitalization of one of their members (Bram, 1974; British Columbia Ministry of Health, 1980; Griffiths &Cos1n, 1976;Huey, 1983;Koff, 1974; Lear et al., 1969; MacCourt & Southam, 1983; Robertson et al., 1977). In addition, respite care institutionalization can be used when the elderly person exhibits a sudden change in physical or mental status, requires a review of medical management or requires a short course of treatment to upgrade functional ability (British Columbia Ministry of Health. 1980; MacCourt & Southam, 1983; Robertson et al., 1977). Although there is a limited number of respite care beds available in Canada, respite beds are utilized by individuals for approximately 2-6 weeks at one time (Government of Canada, 1982). These utilizations may be as frequent as once a month or in some  29  facilities occur only on a yearly basis (British Columbia Ministry of Health, 1980; DeLargy & Belf, 1957; MacCourt & Southern, 1983; Robertson et al., 1977). In an English publication, Lear et al. (1969), discussed their 3-year experience with 73 families who used two psychogeriatric wards of a psychiatric hospital for respite care admissions of their elderly relatives. Although the authors did not discuss a methodology for their observations, they found that 4-week intervals of institutionalization and home life were acceptable to the patients, relatives and professionals. This time period allowed the patient to get used to the ward without becoming institutionalized. The relatives appreciated the 4-week break in which they had time to rest and prepare themselves for the patient's return home. In the past few years, respite care has started to receive attention in the literature. However, there has been a paucity of research conducted in respite care. The literature available for this service has based it's findings mainly on assumptions rather than on research findings. For years, individual home care agencies and homes for the aged have provided respite care on an ad hoc basis but this service has not been studied in an organized manner (Foundation for Long Term Care, 1983). Two studies performed in 1969 and 1977 have minimally assessed the advantages of respite care use for family caregivers (Lear et al., 1969; Robertson et al., 1977). These studies focused mainly on hospital bed occupancy and interprofessional working arrangements. In the study by Lear et al. (1969) mentioned above, a 4-week sharing program with family caregivers (4-week intervals of institutionalization and home life) was offered to 73 families between mid-1966 and April, 1969. The arrangement was  30  judged "successful" in 58 cases and in 8 cases "unsuccessful" (in 2 cases the institution refused readmission, in 4 cases the relative refused readmission, and in 2 cases the relative became unfit). Of the remaining seven patients, two were discharged from the program and five died soon efter admission. Criteria for the stated successfulness/ unsuccessfulness of the program were not provided by the study report. The Robertson et al. stud/ (1977) used written or telephoned questionnaires to elicit data from health care professionals regarding 50 families who utilized a respite care hospital-based program. Reports from the health care professionals indicated that 33 families found intermittent respite care use to be "essential" while 17 found it "very useful". Again, the criteria for these findings were not stated. A formalized research project, performed by the Foundation for Long Term Care (1983), analyzed institutional respite care during 1980-1981 at six long term care facilities throughout New York state. One hundred and thirty-four clients and their families were studied. Demographic data from this project snowed that 64* of the primary caregivers were children of the elderly relatives and had 8 mean age of 58 years. Elderly relatives were predominantly female, over the age of 80 end required a large amount of direct assistance daily. Four modes of data collection were used 1) patient profile, 2) primary caregiver profile, 3) post-stay survey of primary caregiver (30 days 8fter discharge), and 4) administrator's final report. The major findings of the Foundation for Long Term Care study are as follows: 1) Respite care is viewed as a beneficial experience by the caregivers. A post-stay survey of caregivers (30 days after discharge) found that 78.5* of caregivers  31  considered the service to be "very satisfactory" while 19.65B rated it "satisfactory". Eighty-three percent of the caregivers indicated that they would use respite care again (p.20). 2) Care-receivers in this respite project were in a more unstable health condition than the elderly population at large; yet a majority reported the same or better health conditions one month after respite care use (pp.34-35). Improvement in care-receiver health was frequently attributed to drug regimen changes during respite care use (p.43). 3) Respite care may be more effective in keeping persons in the community when the reason for using the service is a vacation or respite for the caregiver, when the patient lives with the caregiver and when the caregiver is under age 70. If a caregiver has been ill or hospitalized, he/she is more likely to subsequently place the elder in a long-term care facility after respite care use (p.35). 4) Families use respite care for scheduled relief. At two of the facilities, as the respite concept became more familiar, families scheduled breaks every four months (p.63). 5) Respite care demand tends to cluster around the summer (July-August) and holiday (December-January) months (p.77). 6) Caregivers may see the respite care service as a true deterrent to permanent institutionalization. In this stud/, 38SB of the caregivers stated that they would have considered permanent placement if the respite care project had not been available (pp.41-42).  32  7) In contrast to 6) above, after respite care use caregivers may apply for permanent institutionalization. By familiarizing an elderly person with a facility that provides a positive environment the person may not be as resistant to placement In this context, it is possible for respite care use to accelerate institutional placement. The higher rate of placement (20.1 % at one month post-respite care use) for patients in this study compared to the elderly population at-large may be due to caregiver/care-receiver familiarization with the institutional environment, the deteriorating condition of the patient, or the condition of the caregiver. These assumptions, however, still require further investigation (pp.44-45). In summary, the respite care service is assumed to provide rest and relief for family caregivers through the intermittent or temporary institutionalization of their elderly relatives. Although there is minimal research available to support this assumption, caregivers who have used this service view respite care as a beneficial experience. Conclusions This chapter has reviewed family caregiver literature from the late 1950's to the present time. Major research findings related to the identification of family caregivers, factors identified with the family caregiver role, family caregiver interactions with health care services, and respite care were identified. Many conflicting results were found in relation to the factors identified with the family caregiver role (such as church involvement, labour force involvement, and caregiver health) and the family use of support services before seeking institutionalization. In addition, this review identified  33  several factors that limit the generality of the conclusions drawn from these studies. These factors include small sample size, qualitative study results applicable only to caregiver populations specifically outlined in the studies, and respite care literature findings based mainly on assumptions. In conclusion, this literature review has highlighted a major deficiency in the research relating to family caregiver experiences with the respite care service; the needs of family caregivers which can be met through the use of respite care have not been elicited. With the benefits of a needs framework described in Chapter 2 and a descriptive design, this study attempts to: identify selective characteristics of family caregivers who use respite care, identify those factors which influence the family caregivers' decision to use respite care, describe the family caregivers' experience during the time of respite care use, end identify the consequences of respite care use for the family caregivers.  34  CHAPTER 4 METHODOLOGY This chapter provides an overview of the qualitative, grounded theory methodology used to carry out this study. Through the grounded theory approach, attempts will be made to build substantive theory rather than test theory that already exists (Glaser & Strauss, 1967). In the first section of this chapter, the rationale for choosing a qualitative grounded theory approach will be presented. Subsequent sections will address the study's sample selection, data collection and data analysis procedures, and ethical considerations. Rationale for Choosing a Qualitative, Grounded Theory Approach As described in Chapters I and 3, there is a dearth of information available in the literature pertaining to family caregiver experiences with the respite care service. This dearth of information makes it difficult or impossible to study this social situation in a quantitative manner since salient variables for family caregiver experiences with respite care 8nd theories pertaining to these experiences have not been identified Therefore, a methodology which aims to generate theoretical constructs that explain the family caregiver experiences with respite care is necessary for this study. The grounded theory approach, which has been developed by Glaser and Strauss (1967), is a method that is suitable for the present study's purpose. This inductive research methodology, wherein theory is discovered from data, is based on a strategy of continuous comparative analysis. Through the process of continuous comparative analysis data are collected, coded and then compared and contrasted with all other data. Data collection, processing and analysis  35  proceed simultaneously. As the process progresses, concepts become increasingly abstract and refined until ultimately substantive theory grounded in the data collected evolves. The purpose of continuous comparative analysis is, therefore, not to account fully for all contingencies of the social situation but rather to provide a conceptual referent or thematic description of the situation under study. Credibility of the Grounded Theory Approach When conducting an inquiry that encompasses a qualitative mode of investigation, the quantitative terms of validity and reliability are not appropriate to this method Instead, a qualitative study is viewed in terms of it's credibility. According to Glaser and Strauss (1967), the credibility of a particular substantive theory is determined by four highly related properties. These are as follows: The first requisite property is that the theory must closely fil the substantive area in which it will be used. Second, it must be readily understandable by laymen concerned with this srea. Third, it must be sufficiently general to be applicable to a multitude of diverse daily situations within the substantive area, not to just a specific type of situation. Fourth, it must allow the user partial control over the structure and process of daily situations as they change through time(p.237). In reference to the individual categories inherent in the substantive theory, credibility is judged in terms of the category being mutually exclusive, exhaustive, unidimensional and a significant definition of the whole (Diers, 1979). To promote the credibility of the qualitative research, the investigator must set  36  aside personal assumptions and preconceptions. This will enable the researcher to fully access the subjective experience and meaning of the phenomena under study. In summary, the goal of the grounded theory approach used in this study is to develop substantive theory which explains family caregiver experiences with the respite care service. Sample Selection In this section, the criteria end procedure for sample selection will be addressed  Sample Selection Criteria  The selection of potential candidates for this study was guided by the following criteria. A rationale for each criterion is included in this subsection. Criteria 1) Family caregiver must be an adult  Rationale 1) Target population;  son, daughter or grandchild (or his/ her spouse or child) of the elderly relative; 2) Caregiver children of the adult son, daughter or grandchild must be 18  2) Age of legal consent;  years or older at the time of contact; 3) Family caregivers must be identified  3) The concerns of  by the family as the persons who ere  otter family  primarily responsible for providing  members are not  37  care to the elderly relative (maximum  the focus of this  of two caregivers per family);  study and may cloud the study results;  4) Family caregivers must live with the elderly relative;  •4) The concerns of caregivers living outside the home may confound the caregiver experience;  5) Family caregivers provide care to  5) Concerns involving  an elderly relative who does not have  the spouses of  a living spouse;  elderly relatives may confound the caregiver experience;  6) Family caregivers have used  6) To facilitate  institutional respite care at least  recent recall of  once during the last 3-6 months;  the experience but to also allow time for the consequences of  38  respite cere use to occur; 7) Family caregivers are fluent in English.  7) To facilitate communication.  Sample Selection Prnneri'irfi Since most respite care programs in the Vancouver area receive their referrals from Long-Term Care or Home-Care divisions of health departments, two Greater Vancouver Health Departments were approached, through verba) and written requests, to obtain a sample for this study. Contact with potential participants was made through representatives from the two Health Departments. Health Department A initially contacted the potential participants via mail. An introductory letter/consent form devised by the researcher and a cover letter written by the representative from the health department were sent to the candidates. (See Appendix A for the introductory letter /consent form and Appendix B for the cover letter.) Initial contact with the potential participants was made by the researcher when the candidates returned the consent portion of the introductory letter via mail or when they telephoned the researcher for clarification of the study procedure. Only three potential candidates telephoned the researcher prior to returning the consent form. In total, ten potential candidates returned the consent form to the researcher via m8il. One man indicated in his reply that he was not suitable for the study since he did not reside with his elderly relative. This man was therefore excluded from the study. Upon receipt of the consent forms, the researcher then telephoned each respondent  39  to confirm the candidate's participation in the stud/, answer any questions and arrange an initial meeting in the respondent's home. During the initial telephone call to one family, two members were identified as primary caregivers. Since the two family members were not comfortable with individual interviews, they were interviewed together. Another potential candidate (a woman) indicated, during our telephone conversation, that she had reconsidered her desire to participate in the study and did not wish to discuss her caregiver experience. This woman was then excluded from the study. Seven women and one man were initially included in the study. However, it was discovered during the first interview with one woman that although her family used the respite care service, her elderly mother resided independently in her own home and had only stayed with the family for two months during the previous year. This woman was then excluded from the stud/. In total, six women and one man were selected from those identified by Health Department A as subjects for this study. Contact with the caregivers identified by Health Department B was made initially by visiting Home-Care Nurses. The potential participants were asked by the nurses if they would like to receive information regarding participation for this study. If the caregivers expressed an interest, they then received the introductory letter/consent form devised by the researcher. The initial contact made by the researcher with the Health Department B potential candidates was identical to the procedure outlined for the Health Department A participants. Only one potential candidate from Health Department B responded via mail to the researcher. This woman was excluded from the study since she indicated that she was unable to adequately communicate her caregiver experience in the  40  English language. In summary, six women and one man were found to be suitable candidates for this study and were thus interviewed by the researcher. Data Collection Procedure The data collection interviews were conducted in the subjects' homes during a 6-month period from December 1984 to May 1985. Each interview lasted 60 to 100 minutes. All of the seven subjects were interviewed at least once. Six subjects were interviewed twice to explore in greater depth ideas they had expressed during the first interview and/or concepts emerging from data analysis. All interviews were recorded on audio-tape to enable the researcher to concentrate fully on the interview situation. Transcripts of the data were made following the interviews. A data collection tool was used to collect demographic data from the family caregivers. (See Appendix C for demographic data collection tool.) The data were obtained during the first interview with each caregiver. Semi-structured interviews (with open-ended questioning) were used to elicit data from family caregivers. The interviews were guided by a needs framework, which has been derived from the U.B.C. Model for Nursing (1980). Nine major needs were Included in this needs framework. They were: 1) the need for mastery, 2) the need for love, belongingness and dependence, 3) the need for respect of self by self and others, 4) the need for stimulation of the senses (ie. hearing, vision, smell, touch and taste), 5) the need for safety and security, 6) the need for collection and removal of accumulated wastes, 7) the need for balance between production and utilization of energy, 8) the need for  41  oxygen, and 9) the need for intake of food and fluid; nourishment (U.B.C. Model for Nursing, 1980, p. 10). The needs framework provided structure for the formulation of sample questions used in the interviews. Sample interview questions were designed to: 1) identify those factors which influence the decision to use respite care, 2) describe the family caregivers' experience during the time of respite care use, and 3) identify the consequences of respite care use for the family caregivers. (See Appendix D for sample interview questions.) initially, the sample questions were used to offer possible topics of discussion for the first participants interviewed. However, as conceptual categories (factors which could be related to the identification of met or unmet needs of family caregivers) emerged from the enalysis of the first few interview transcripts, the researcher refined the open-ended questioning approach. For the first part of the interview the researcher continued to use the sample questions as a guide to access subject interests. During the second part of the interview, questions were directed towards exploring the conceptual categories identified by other subjects in preceeding interviews. This process of theoretical sampling was continued during the second interview with each participant. During the second interview, the researcher asked questions which were intended to provide data for the advancement of the emerging substantive theory Data Analysis Procedure Data were simultaneously collected and analyzed using the 5-step process of continuous comparative analysis described by Maxwell end Maxwell (1981). This 5-step process, which has been derived from Glaser and Strauss' grounded theory approach  42  ( 1 9 6 7 ) , is outlined below. Step 1;  Creating Analytic Units Data were collected and coded. As data were received, the researcher applied a  system of open coding which codified the substance of the data. The codes often reflected the subjects' own words. Each transcript was first read as 8 whole and then examined carefully line by line for similar and dissimilar comments expressed by the participants. Each subject's like responses were grouped together on reference sheets. For example, a caregiver's comment relating to the lack of help received from other siblings was coded in the margin of the transcript as "relationships". The researcher then collected all the data pertaining to a code and grouped them together on a reference sheet with the code written on the top of the page. These reference sheets provided an overview of the data by organizing and displaying the data of the various codes. Three numbers were recorded on the reference sheets. On the upper right hand corner, a number was assigned to the specific participant referred to on the reference sheet. The number of the interview and the page number of the transcribed interview were recorded on the right-hand side of each comment. This approach facilitated the sorting and organization of data Step?- Cnnnfipt Fnrmatinn In this step, coded data were compared, contrasted and clustered together into conceptual categories.  43  Step 3; Concept Development An 8bundetnt number of categories evolved. In this step, the conceptual categories were compared with each other aid to theoretical concepts found in the literature. Expert review of categories developed from the data was provided by the research advisors. As the main categories became apparent, each category was analyzed in terms of it's dimensions, conditions under which it was pronounced or minimized, its major consequences, its relation to other categories and its other properties (Glaser & Strauss, 1967). Through this analysis, the categories were also examined in terms of whether they were factors leading to respite care use, concepts pertaining to the respite care experience or concepts which identified the consequences of respite care use. Theoretical sampling was used to further develop the emerging substantive theory. This process continued until no new concepts emerged ami a concept saturation point was reached. Step 4: Concept Integration In this step the emerging theory was integrated and delimited. The developed concepts were compared, related with one another and placed under the headings of "factors leading to respite cere use", "respite care experience", and "consequences of respite cere use". During this step, family caregiver needs (adopted from the U.B.C. Model for Nursing, 1980) which were met through the use of respite care were identified through an analysis of the developed concepts.  44  Step 5: Production of Research Mormgraph  The final step involved the writing of a report which described the relationship between the core variable and the developed concepts and identified the needs of family caregivers which were met through the use of respite care. Concepts that did not appear throughout the data were dropped. Literary references were woven into the report to explain the substantive theory that emerged from this study. Also, the report used data which were anecdotal rather than numerical to support the substantive theory since a continuous comparison method was utilized rather than a comparison of totals of indices. Ethical Considerations Prior to the recruitment of subjects, approval of the research proposal was obtained from the University of British Columbia Behavioral Sciences Screening Committee for Research and Other Studies Involving Human Subjects. It was anticipated that this study would be in no way harmful to the participants. As indicated in the subsection entitled "Sample Selection Procedure", the researcher did not have access to the potential subjects until they responded via telephone or mail to the introductory letter. Through this method of contact, the potential candidates were able to freely decide whether or not they would like to participate in the study. If they felt that the introductory letter did not provide them with sufficient information to make a decision, they were able to contact the researcher by telephone. Three potential candidates did contact the researcher by telephone to ask questions.  Each participant signed and returned via mail an informed consent form prior to the first interview. At the beginning of the first interview, the ethical concerns outlined  45  by the researcher in the introductory letter were reviewed. Details pertaining to the typing, storage, use, and ultimate disposition of the audio-tapes and transcripts were also addressed. All participants were reassured that no personal identifiable information would be included in the final report. Confidentiality was ensured through a coding system known only to the researcher. Summary As evidenced in this chapter, 8 grounded theory approach was adopted for this study to enable the researcher to explore family caregiver experiences with respite cere. Since there is little known about the needs of family caregivers in respite care situations, this research methodology simed to develop substantive theory from the data collected. A process of continuous comparative analysis and theoretical sampling were used to generate the substantive theory. In the following chapter, the substantive theory will be presented and discussed through the research findings of this study.  46  CHAPTER 5 PRESENTATION AND DISCUSSION OF THE RESEARCH FINDINGS This chapter presents the findings in relation to the study's purpose and four objectives. The findings identify the selective characteristics of family caregivers who use respite care, the factors which influence the decision to use respite care, the family caregivers' experience during the time of respite care use, and the consequences of respite care use for the family caregivers. The findings for each objective are addressed separately and are in e narrative form. As s result of an analysis of the findings for each objective, the deteriorating health of care-receivers is identified as a major concept which influences the caregivers before, during and after respite care use. Family caregiver needs which can be met through the use of respite care are also identified and presented, using the needs framework developed by the U.B.C. School of Nursing (1980). This chapter will begin with the identification of the selective characteristics of family caregivers who use respite care. Selective Characteristics of Family Caregivers Who Use Respite Care Caregiver demographic data were obtained from the caregivers interviewed for the purpose of identifying the selective characteristics of family caregivers who use respite care. (See Table 1 for caregiver data.) Demographic data pertaining to the care-receivers were also elicited from the seven caregivers to further identify the selective characteristics of family caregivers. (See Table 2 for care-receiver data.) Since two caregivers provided care for the same elderly relative, care-receiver data were  47  only collected for six care-receivers. Caregivers ranged in age from 39-69 years of age and were equally represented (n=2) in each of the forty, fifty 8nd sixty age groups. Six out of the seven caregivers were female, of English origin and were married daughters of the elderly female relative. Four subjects ( I male and 3 female) were employed in various occupations at the time of the study. One subject changed from full-time to part-time employment during the course of caregiving but did not consciously attribute this shift in employment to the caregiving experience. Post-secondary education was obtained in some form by five of the seven subjects. One of these caregivers was currently pursuing a Bachelor's degree at a university. The length of the caregiving experience for the caregivers ranged from two to seventeen years. However, five out of seven or 7151 had been caregivers for 10 or more years. All of the caregivers used respite care for a 2- or 4-week duration. Only one caregiver used the service three times. For this caregiver, respite periods were three, four and eight weeks in length. Intermediate care institutions were used by all of the caregivers for respite care. This type of institution provided services for care-receivers who required minimal or no assistance with dressing, toileting and ambulation but required assistance with bathing, medications and meal preparation.  1  The six female care-receivers ranged in age from 74-97 years. Three of the six care-receivers were In their 90's and the youngest W8S in her 80's. According to the  48  caregivers, the care-receivers had multiple health concerns. The characteristic which appeared to be most prevalent was sensory loss. Three care-receivers had poor eyesight (two care- receivers had cataracts) and four care- receivers were deaf. During the time of the caregiving experience, three care-receivers had hip or leg fractures which were attributed to the care-receivers' poor eyesight. Table 1 Summary of Caregiver Demographic Data  Caregiver Characteristics  (n=7) Age 30's Age Group 40's Age Group  2  50's Age Group  2  60's Age Group  2 Range of 39-69 Years  Sex Female  6  Male  (table continues)  49  Caregiver Characteristics  Marital Status Married  6  Widowed  1  Ethnicity English  5  French Canadian  1  Japanese  1  Employment Employed  4  Full-Time 3 Part-Time 1 Not Employed  2  Retired  1  Occupation Registered Nurse  1  Photographer  I  Secretary  2 (table continues)  50  Caregiver Characteristics  Level of Education High School Diploma  2  Post-Secondary Course  3  Bachelor's Degree  I  Nursing Diploma  1  Relationship to Elderly Relative Daughter  5  Daughter-In-Law  1  Son  1  Number of Siblings No Siblings/Only Child  2  2 Siblings  1  3 Siblings  2  6 Sibling  1  Length of Caregiver Experience Under 5 Years 10 Years and Over  2 5 Range of 2-17Years  (table continues)  51  Caregiver Characteristics  Number of Respite Care Uses Once  6  3 Times  1  Length of Respite Cere Use 2 Weeks  4  3 Weeks  1  4 Weeks  3  8 Weeks  1  Type of Institution Used Intermediate Care  7  Table 2 Summary of Care-Receiver Demographic Data  Care-Receiver Characteristics  (n=6)  70's Age Croup  2  80's Age Group  1  90's Age Group  3 Range of 74-97 Years  Sex Female  6  Health Concerns* Deaf  4  Poor Eyesight  3  Cataracts 2 Hip-Leg Fractures  3  Congestive Heart Failure  2  Arteriosclerosis  2  Bladder Cancer  1  53  Care-Receiver Characteristics  Health Concerns Cerebral Vascular Accident  1  Epilepsy  1  Duodenal Ulcer  1  Arthritis  1  * Respondents cited more than 1 health concern for each care-receiver  This section has identified selective characteristics of the family caregivers. Generally, the caregivers were female, of English origin and were married daughters of the elderly female relative. The caregivers had generally provided care for 10 or more years to an elderly relative who experienced multiple health concerns of which the most prominent health concern was sensory loss in the form of poor eyesight and/or deafness. The caregiver characteristics will be discussed further in subsequent sections. Factors Leading to Respite Care Use The findings indicate that factors leading to respite care use could be classified under three major categories: 1) Mental Strain, 2) Physical Strain, and 3) Influences of Support Systems.  54  All of the caregivers interviewed indicated that the above three categories were the major reasons why they used respite care. Each caregiver discussed factors in relation to each of the three categories and specifically used the terms "mental strain", "physical strain", and "support systems" to describe and explain how each caregiving factor impacted his/her life. The discussion that follows uses the three identified categories 8S 8n organizing framework for presenting the caregivers' accounts of factors leading to respite care use. There is no hierarchy of importance intended in the discussion since the three categories were identified by all of the caregivers as being equally burdensome.  Mental Strain All of the caregivers reported that mental strain W8S 8 major factor which led to their use of respite care. Mental strain is defined as the feelings of burden or pressure that the caregivers experienced. Comments such as, "It's frustrating looking after an elderly mother," "She was driving me nuts", "She's a constant strain both physically and mentally", "She's always getting into my hair", and "My mental health is cracking", reflect the feelings of burden or pressure (mental strain) that the caregivers were experiencing. Caregivers Identified feelings of responsibility, lack of freedom, communication difficulties between the care-receivers and themselves, and the negative impact of caregiving on their immediate family members as the factors which caused them to experience mental strain. The care-receivers' deteriorating mental and physical health was described by all of the caregivers as a major reason why these factors were  55  particularly burdensome. One caregiver describes the mental strain caused by her csre-receiver's deteriorating health: Sometimes I thought IW8S going to throw her in that ditch you know if she didn't shut up. It's a terrible thing to say about your mother but.. .You know the constant complaining 8nd the memory loss and poor eyesight... She was always looking for her jewellry and couldn't see it or remember where she left it. She was constantly asking me to help her find her jewellry. That was so frustrating. You know older people can get very hateful and she was one of them. She was always complaining and everything was taken out on me. Similarity, another caregiver commented: When it gets into those really bad periods of time that she can't remember anything or can't hear anything you just think to yourself "I just can't handle it anymore". Keeping the deteriorating physical and mental health of the care-receivers in mind, this discussion will now turn to the four factors which comprise the caregivers' feelings of mental strain. The discussion will begin with caregiver feelings of responsibility. Feelings of Responsibility  All of the caregivers in this study identified the feeling of constant responsibility for the care-receiver as a major aspect of caregiving which contributed to the mental strain that they experienced. This responsibility may be described as the caregivers' feelings of being constantly accountable to themselves and others for the physical and  56  emotional care of the care-receivers'. One caregiver sums up this feeling as follows: "I don't know if there is one particular aspect of caregiving that I can identify as most stressful. I guess it's perhaps having the responsibility that is there with you all the time and there is really no escape from it". Caregivers who experienced a lack of family support outside of the immediate family, conflict between family and care-receiver responsibilities, and a role reversal of parent and child between the care-receiver and the caregiver identified these aspects of caregiving 8S conditions which increased their feelings of responsibility. Feelings of responsibility were also increased when the caregivers felt compelled to provide the care-receivers with opportunities that would promote care-receiver independence. These aspects which increase feelings of responsibility will now be discussed separately. Lack of family support outside of the immediate family was seen by all of the caregivers as a major contribution to their feelings of responsibility. Five of the seven caregivers specifically identified that there was a lack of sibling support in their families and the remaining two caregivers stated that they were only children and thus were obviously unable to receive assistance from other siblings. Three caregivers who expressed feelings of constant responsibility due to a lack of sibling and other family support also expressed feelings of resentment towards these family members. One caregiver commented Right now there is only my husband and two daughters living in this area and quite a few grandchildren. We are the only ones who have anything really to do with her. The rest have just left her. I guess it is more convenient for them... One Daughter  57  (of care-receiver) used to take her in when she was on a few pills which she could take herself but after she got past that stage when they would have to take her by the arm or take care of her or be aware that she was there... or even put her in the bath... then that idea was finished... It seems to me when I talk to other people that this type of situation seems to be fairly common but unfair. Brody (1982) supports these findings and reports that emotional support from siblings mitigates the caregivers' strains but when changes in the family stimulate interpersonal conflicts, relationships are affected negatively among adult siblings. Two other caregivers who experienced a lack of sibling support identified their siblings as being geographically distanced from the caregiver or as having other responsibilities which prevented them from providing assistance. For example, one caregiver stated: I have another sister... she used to invite mother over there all the time but she, for the last two years now, she hasn't been able to do anything. In fact it has been more like us helping her because her husband's got Alzheimer's disease and is hospitalized as well so she can't help us at all. She's got her hands full. Another caregiver commented: It's difficult not having that relief.. .you know either a sister or a brother who could take her for even an afternoon or something to share the responsibility... If I had my family close by and if they would pitch in and help then I think it is quite workable but it is very, very difficult here. One sister tries to help in her small way in that she will come out for a week once a year.  58  Although both of the caregivers who were only children viewed caregiving as an experience for which they as only children should show responsibility, they also found this responsibility to be very difficult to handle. One caregiver admitted: It's totally my responsibility. I'm en only child... and I've accepted that responsibility... eventually it was for me to take care of her. I always knew that it was going to end up that way. I grew up knowing that.. .It still is hard though. We've kind of made our lifestyle work around it but I think as time goes on it is going to get more and more difficult. For three caregivers who had living siblings, the responsibility for caregiving was placed or dumped upon them by other siblings. Archbold (1980) Identifies this situation as "automatic" family decision-making. The sibling who is viewed, by the family, as being the oldest, the most responsible, the single one, or the closest one to the elderly relative is usually placed in the caregiver position. In this study, the caregivers who were placed in this position were viewed as the most responsible or the closest sibling to the parent One caregiver stated: That was due to family wishes. I had made arrangements for my Mom to go to (an institution) but when the time came for admission my sister from out East came out and said that Mother was not to go into a care facility. So we kept her at her own home for another year with me looking after her everyday until my health couldn't stand it. I thought I would crack up 8nd then my family decided she should live here. Another caregiver explained her situation:  59  My brother wanted her to be put into a home (back East)... And then my two sisters phoned me end asked me if she could come out here and I said, "yes" that she could because I didn't want her in a nursing home. So when I flew back I found that my brother had put her into a nursing home arbitrarily ami my sister had gone and took her out because she wanted me to look after Mom. Anyways, she's here... but it did cause a lot of friction in tire family. My brother wouldn't talk to me for the first year that she came out here. Another aspect of caregiving which greatly influenced the caregivers' feelings of responsibility was the conflict they experienced between family and care-receiver responsibilities. The more caregivers felt that they had 8 responsibility towards other family members end that involvement in and sense of family was a positive value, the more likely they were to feel strain (Cantor, 1983). One caregiver whose children were grown and living away from home stated: My husband has been retired for two years now but he hasn't been able to take advantage of that.. .He's very understanding but I feel a responsibility to him too. Another caregiver admitted: So many people make demands on you. I have a teenager, a very difficult one... and a 12-year old who is no problem at the moment but I have a 15-year old and 8 husband who... makes demands on me and a mother. I don't know who I should be more responsible to... my mother or the rest of my family. Similarly, another caregiver commented on her situation: I do feel that I'm not being with my children as much as I'd like to. I always feel  60  that. I feel that my kids are growing up.. .I'm missing them. I'm spread in too many directions as far as my family is concerned and I try and make her happy but I also don't want them to grow up. Soldo end Myllyluoma (1983) report that the presence of minor children in the home exacerbates the caregiver's daily stresses and strains of caregiving. The role reversal of parent and child (between the care-receiver and the caregiver) was another aspect of caregiving which was identified by caregivers 8S increasing their feelings of responsibility which in turn promoted mental strain. Five caregivers equated the role reversal situation with a "second chi ldhood". One caregiver stated: She was the one that was becoming the child and I was the one that had to look after her. I didn't look after her as my sick mother if you know what I mean. I've helped her in the past as a daughter but this was different with her mind going... Oh, it was hard for both of us this role-reversal. Similarly, another caregiver commented: Actually we had more of a role-reversal if you know what I mean. I was doing for her 8SI would do for my kids. It was difficult to have to do that for your own mother. You always think that she would be there for you as a mother would be but that was not the case for me. Another caregiver equated the "second childhood" with a reversal of the growing process of children: I've been just wstching the whole movement like a person watches children grow  61  up. I've watched her grow old and it is hard to take. It's the responsibility. It's most frustrating. As she went deaf, more and more deaf, I lost more and more patience. Although Brody (1985) does not agree with the concept of "role reversal" as described by the caregivers in this study, she does support that caregivers are faced with the issue of the older person's dependency on adult children. Brody argues that being depended on by one's elderly parent and being depended on by one's young child have different meanings. "When caring for an infant or child, the future holds promise of a gradual reduction in dependency; caring for an impaired older person presages continuing or increasing dependence" (p.23). She further argues that caregivers have very different reactions to manifestations that are normal for children but ere symptomatic of pathology in the elderly adult. Thus, Brody would disagree with the caregivers' interpretations that caregiving can be equated with child-rearing but would state that the caregivers' reactions are in accordance with a dependence/independence conflict. Another aspect of caregiving which increased the caregivers' feelings of responsibility was the caregivers' desire to promote care- receiver irafependence. Four caregivers indicated that they felt they had a responsibility to provide opportunities which would promote care-receiver independence. One caregiver explains her situation: She puts something in the dryer, she lets it tumble three times and then she opens it and closes the door again. It goes bang, bang, bang, and then she opens it again and so on... and she does it in such a way that drives me around the bend.. .But I let her do it because she needs.. .to feel she's doing something useful.  62  Feelings of responsibility have been discussed in relation to caregiver lack of sibling support or support due to being an only child, conflict between family and care-receiver responsibilities, role reversal of parent and child, and the promotion of care-receiver independence. Although these aspects of caregiving were identified by the caregivers as increasing their feelings of responsibility, there was no indication that the caregivers ever denied their responsibility toward the care-receivers. Cantor (1983) supports this finding and has found that caregivers do not deny their responsibility but instead handle conflicting demands and interpersonal strains through considerable personal sacrifices. This leads now to a discussion of lack of freedom which has also been identified by caregivers as contributing to caregiver mental strain. I ark nf Frefirinm  Lack of freedom is defined as the caregivers' limited psychological and/or physical independence from the care-receiver. It has been expressed by the caregivers in terms of having limitations placed on their personal time and social life. The limitations on personal time were due to the caregivers' inability to leave the care-receivers unattended for long periods of time and the need to provide care for the care-receivers. However, three caregivers actively pursued personal time activities in order to experience some personal satisfaction. These activities included: 1) hobbies performed at home, 2) educational courses, and 3) employment. The limitations on social life were due to the inability to leave the care-receivers' unattended for long periods of time. All of the caregivers expressed much concern over the limited or lack of personal time that they experienced. This lack of personal time in five cases was due to the  63  caregivers' being unable to leave the care-receivers' unattended for several hours at a time. One caregiver described it this way: I did feel the lack of freedom before the swing bed was available... I'm crazy about malls and I wander around them all. I'm a window-shopper... Even when I went out I wouldn't go out for more than a couple of hours at a time. You know she would answer the phone but she'd get messages so garbled.. .so I never did phone her. So I had to come home early and what a pain that was. No freedom really. Thus, spur-of-the-moment activities became impossible (Archbold, 1980). One caregiver commented: The other night I went to the hairdresser's after work... I ran home and then ran to get my hair done and then back again to cook dinner. Whereas if I know that I am by myself then I probably would have just gone and had a bite to eat and gone shopping. So it's those types of things that you can't do. If you are gone... well you really have to plan... everything has to be planned. It's not easy. Another caregiver was unable to leave her mother unattended in the house: She likes constant company so if I'm working in the kitchen she will come in end sit there and I think she worries if anything happens to me because if I'm out of her sight for very long... If I'm on the phone for any length of time then she Is wanting to know where I am and what is the matter.. .I've always been 8 very private kind of person. When I do things I don't like an audience you know. Four caregivers expressed a concern over their inability to spend time at home relaxing. One caregiver described it this way:  64  You can't sit down and read a book and relax... She cannot rest or relax so when you do It she kind of wonders what the heck... So all the time you're aware that she's wandering up and down and waiting for you to do something or clean up... Five (out of seven) caregivers did not consider the care-receiver to be within their immediate family and thus viewed this person as an outside relative living in their home which disturbed their personal time. This Is evidenced in the following comments: "It's just someone else in my home. The lack of privacy mostly really makes it uncomfortable". One caregiver went so far as to live in the basement of the house while her mother lived upstairs in order to receive some personal time away from her mother. It is common for the activities deemed meaningful by the caregiver to be given up in deference to the care of the parent (Archbold, 1980; Cantor, 1983). One caregiver described how she had to give up personal activities that the care-receiver had also enjoyed in the past: I liked to knit and she's always knitted and she cannot knit anymore. She can't remember where she's 8t in the pattern or what she did on the last row 8nd she can't see that well either but if I start knitting it really gets her going. "Oh, why can't I knit".. .1 just don't knit anymore because it really upsets her. It's just not worth it. Sewing... I can sometimes sew. That doesn't bother her at all csuse she never did do that very well. Although the caregivers all experienced a lack of or limited personal time, three of the caregivers actively pursued personal time activities in order to experience some personal satisfaction. The amount and type of personal time activities pursued depended on  65  what the individual caregiver was able to and willing to accomplish. One caregiver found some personal satisfaction in her involvement with an aerobic exercise class which she attended three days a week at noon-time. Another caregiver who previously was engaged in many activities outside of the home prior to caregiving turned her energies towards a personal hobby that she could pursue in her home. She stated: I've taken up stain-glass and I took a course, a one day course, a Saturday course because I knew if I went to night-school it would be too much going week after week. So I thought I would only be gone for a day so I've done that and I've bought myself some equipment and I've been doing that at home. That is something that I can do here and it is good because she sits in the kitchen while I'm working. While this caregiver opted to take a short one-day course in order to pursue her hobby, another caregiver actively pursued on-going course-work at the university level in order to gain personal satisfaction. This woman received personal satisfaction anticipating that her education would provide her with an opportunity for future advancement in her job even though she found it difficult to pursue her education due to her caregiving situation. She described her situstion in the following way: I just want to see if I can get first year English... I guess I'm my own worse enemy by getting into these things. I probably could have left them alone but It was something that I wanted to do. I can see a need in my job in the future for someone with more education than I've got so I figured I should try and get it in the meantime and then I can keep my job... but now that I have this course there is a certain amount of reading that I really have to do but she cannot stand that. It is  66  getting to the point if I want to read I have to go into the bedroom... and close the door. So then she thinks I'm ill. So I have to keep coming out and saying "I'm fine. I'm here"... It's stupid but I need interests outside of the house. Another caregiver actively pursued relaxation personal time by engaging in the use of community services. She described her situation as follows: I really value my time alone. You know what I would do. 1 would take horn to (facility) for the day, come home and you know I would just relax. And I couldn't do that with Mom... God, it was a nice feeling you know to have the house to yourself and people would say well that would give you the chance to go out and do your shopping and do everything that you couldn't do without having to rush back but to me it was coming back to be alone. It was a time to be treasured. Employment in the work force was seen by the four caregivers who worked either full-time or part-time as an activity which gave them personal time away from the care-receiver. This finding is contrary to the findings of Soldo and Myllyluoma (1983) who report that caregiver involvement in the labour force was seen as a "competing demand" that could either inhibit the provision of adequate care or limit the commitment of the caregiver to keep the care-receiver at home. In this study, although working was seen as an added responsibility, the caregivers claimed that without the employment outlet they would find the caregiving situation unbearable. One caregiver expressed these feelings: I work full-time now. I worked part-time for quite a few years but this now has become 8 full-time job and I enjoy it. I need that. The two of us in this house all  67  day doesn't work... I have to have that job so that I can get away from her. Another caregiver stated: "It would be another thing taken away from me if I couldn't work. Yes, I would be home everyday. That's not a good thought". In order to work full-time or part-time, the caregivers required a flexible work schedule. This flexibility in work schedules allowed the caregivers to perform necessary and emergency caregiving activities related to the deteriorating physical and/or mental health of the care-receiver. One caregiver describes her situation: There are two days that I have got looked after and then the rest I look after myself by coming home for lunch and then also there is another day that I have to take the time off in order to get Mom over to day-care on Thursdays. I take time off in the morning and then I leave early from the office to pick her up. So there's that day too and then there is also doctor's appointments and things like that so if I couldn't arrange to get that time off I would be in trouble. You know if I was just strictly a 9 to 5 job and everyday. I work alot on the weekend. So I use that time. One caregiving couple worked opposite hours so that they could use their employment as personal time away from home. They stated: Now there is another reason why we have always managed. I have always worked shifts and I usually work afternoons. He has always been In the wholesale or something where he wasn't working nine to five. He is always here most evenings so it has really worked for us. There is usually somebody around. I'm quite happy to work weekends possibly because we couldn't do anything on the weekends anyways.  68  Archbold (1982a) has also found that caregivers with more flexible work schedules are able to incorporate caregiving activities with minimal disruption in their work. However, she attributes this flexibility with employment positions of higher status. Two of the employed caregivers in this study were in secretarial positions which contrast Archbold's finding. Although the four employed caregivers used their employment es a means for some personal time, there is no indication that they suffered less mental strain as a result of their employment than the three caregivers who were either unemployed or retired. This is in contrast to Rogerson's study (1984). Rogerson interviewed 128 caregivers of which 43/8 were employed. She concluded that those who were employed and therefore had interests, friends and stimulation 8way from the home environment, were less likely to suffer the effects of the physical and emotional strain of caring for an elderly dependant than their unemployed counterparts. From the above discussion, it is apparent that although three of the caregivers seek out personal time activities in the form of a hobby which can be performed at home, an educational course, and/or employment, they still experience limited personal time which indicates a lack of freedom in their lives. This lack of freedom contributes to caregiver mental strain. Another form of lack of freedom is seen in the limited social lives of caregivers. This also contributes to caregiver mental strain. All of the caregivers attribute their limited social lives to the care-receivers' deteriorating health which necessitates that the care-receiver is not left unattended for long periods. Their decreased involvement in  69  social activities leads to social isolation among caregivers (Archbold, 1982a). Socialization, in five cases, is conducted on a small scale with the elderly relative in attendance. One caregiver reports her situation as follows: For instance friends come in visiting. Well mother would like to sit up and take part too. You haven't got the same free and easy conversation with other couples your own age when you are having to... It is just not the same now. Alot of them they knew mother W8S here and of course they would invite her too so it would be the same wherever we go. We're very seldom just on our own. This definitely has had to affect us. Similarly another caregiver stated: If we are invited out to dinner we take her 8long. It is expected. Sometimes we go out to dinner and feed her first. We do have to work our social life around her. We just couldn't go for overnight or too late. Right now we could go out to a great party somewhere but we have to make sure that we remember that we have to be home. Another caregiver commented that she was unable to socialize with other workers at her work-place: It got you down if the girls were going out for lunch or something or the boss would say, "Hey let's go out for lunch" and you couldn't go. You have to be home for lunch. Two caregivers fairly new to this geographical area indicated that caregiving had limited or prevented them from seeking out new friendships. These caregivers, however, maintained past friendships and received occasional visits from their "old" friends. Only  70  one caregiver in her 60's commented that she didn't have the "slightest desire to make new friends" at her age. Lack of freedom, a factor which promotes mental strain, has been discussed in terms of the limited personal time and limited social life experienced by caregivers. The discussion will now turn to communication difficulties between caregiver and care-receiver, the third factor which contributes to mentsl strain. Communication Difficulties Betweenforegiverend fare-Receiver All of the caregivers indicated that communication difficulties between themselves and their care-receivers created caregiver mental strain. Caregivers defined "difficulty in communication" as the (caregivers') inability to consistently ensure care-receiver understanding of content presented in verbal communications. Communication difficulties between the caregiver and care-receiver were attributed to the deteriorating health of the care-receiver. Specifically, care-receiver hearing loss, confusion, and inability to consistently articulate feelings were identified by the caregivers as aspects which increased communication difficulties. Hearing loss was one aspect of care-receiver health which W8S especially troublesome for four caregivers. One caregiver describes her frustration: She hears one word and doesn't hear the others because of her hearing and she goes around stewing over that one word and you realize that your message didn't get through to her. She gets a total different message to what you thought you were giving. Then it becomes very, very difficult and you just give up. Caregivers also found that when care-receivers were confused communication  71  between the caregiver and the care-receiver was difficult. As one caregiver described it "You can't have a good discussion about what you think because she's just not capable of it anymore that's all. It's frustrating for us and it's frustrating for her". When care-receiver confusion was coupled with hearing loss, communication was kept to a minimum and in many cases communication between family members occurred in the presence of the care- receiver who was not Included In the conversation. One caregiver described her frustration over her inability to have logical conversations with her elderly relative: We find ourselves having conversations over her. As if she wasn't there. We hate having a conversation over her head but really we have no other way around ft because wh8t you are talking about she either wouldn't understand or doesn't get the jist of it. She won't watch the news so she will look at the T.V. for one second and see one picture and get totally confused about the topic but when you try and explain what it's all about, she's not interested. So you find yourself having this discussion over this person's head sitting there which is difficult. I mean you realize what you are doing but you have to live your own life too end this goes on ell the time. Similarly, another caregiver described her frustration with her attempts with communication: Even though she finally got the hearing aide she couldn't hear me because I lose my voice. It gets lower and lower... At times she will get so frustrated she won't want to have anything to do with what I am trying to tell her or explain to her. So I  72  write it out and let her read it Five of the six care-receivers who had fluctuating confusion levels posed considerable frustration for their caregivers since the caregivers had to adjust their communication methods according to the level of confusion displayed at the moment by the care-receiver. One caregiver reported: The mental aspect of it is very difficult too because sometimes you know she is very clear and everything about what she does and other times she is not very clear at all. You know she's imagining things and she sort of seems to step out of time sometimes... That's difficult to deal with because she really believes that things are happening and I really feel bad... If I try to be too strong and say no these things didn't happen then she won't tell me about it She just sort of sulks and gets depressed and won't talk. It's hard because it is hard for her to express herself when her brain just doesn't seem to function properly. The inability of the care-receiver to articulate feelings is extremely frustrating and upsetting for six caregivers. One caregiver describes her situationShe rants and raves. Sometimes when I go by her bedroom door I can hear her in there. She's just about hysterical but if she hears you she comes out and acts like there's nothing wrong. That's a different person in there cursing and swearing and raving and I've never come across anything like that before but it makes me go cold. I can't do anything about it. A few times I've tried to say, Tell me what it is like I can see something is upsetting you. Tell me what it is". But she won't. It is a really disturbing thing to listen to. Sometimes I think its' probably me that she's  73  cursing. Two caregivers found themselves caught up in communication games with the care-receivers due to the care-receivers" memory loss or state of confusion. Cue caregiver gave en example of a typical communication game resulting from her mother's memory loss: (caregiver) "What dtdyou do with the check?" (care-receiver) "Oh, I haven't touched the check. I haven't seen the check." (caregiver) "Well, it was on the board but you took it down one day." (care-receiver) "No, why would I want to take the check off the board. Why would I want to do that?" Oh, here we go again. It's so hard not to get caught up Into the argument. Even if I explain something exhaustively why and why not, she forgets. Another caregiver felt frustration because she wasn't sure whether her mother was playing games with her: I'd find times when I'd be really yelling at my mother because of the frustration because she should have been able to understand and yet she didn't seem to and I felt too that she was playing on my sympathy alot. Communication difficulties between caregivers and care-receivers have been discussed in relation to care-receiver hearing loss, confusion levels and Inability to articulate feelings. The next and final factor to be discussed in relation to mental strain is the negative impact of caregiving on immediate family members. Negative Impact of Caregiving on Immediate Family Members  The negative impact of caregiving on immediate family members also contributes to  74  caregiver mental strain. Caregiver knowledge that the family is experiencing limited time without the care-receiver, a lack of vacation or weekend time as a family, a lack of family privacy and mental strain among family members increases the mental strain experienced by the caregivers. The following paragraphs describe how each of these aspects impact on the caregivers. All of the caregivers expressed much concern over the lack of time they experienced as a family without the care-receiver in attendance. This lack of family time is attributed to the inability to leave the care-receiver unattended for long periods specifically over meal-times. In four cases, family members were forced to engage in activities on an individual basis in order to leave one member at home to attend to the care-receiver. One caregiver expressed her feelings regarding one family time alteration which was imposed on her family: We'd like to go fly-fishing somewhere out by Hope, spend over-night because you fish early In the morning or late at night but instead we get a little rubber boat and go to Pt. Roberts so that we are back here to cook dinner for her. So it has really limited our activities which I resent. Similarly, another caregiver discusses her resentment over her limited family time: If we go out, I'll come home and make my Mom's dinner and then we'll go out to eat. She gels very mad and maybe won't speak when I come home. So we are usually only gone for ebout two and a half hours. So I find that very difficult that you don't have the freedom that you sort of look forward to when you think that your children are gone and you sort of plan it as you go along that you're going to have that  75  freedom again to be able to do things but you just don't have it Archbold (1980) has observed that other caregivers have also admitted to feeling deprived, angry, and/or depressed ebout the changes in their lives at a time when the responsibilities for their own children had or nearly had ended. One caregiver expressed a desire to devote her energies toward her growing family which contributed to her resentment towards her minimal family time. She stated: I think if we were older I wouldn't feel quite so resentful about our family time as I dorow.I do feel that I'mratbeing with my children as much as I'd like to. I feel as if I'm ripping them off and it's kind of strange because any activity that we do is quite different as a family as what we do with just the kids. I feel that my kids are growing up. I'm missing them. When families engaged in family activities which left the care-receiver unattended for a couple of hours, four caregivers expressed guilt over pursuit of such activities. Comments such as the following were made: "I feel guilty if I go out and enjoy myself, "When we went out I felt terrible", and "I feel guiltyratonly because she's alone but because I'm enjoying myself and she's not. It's stupid. I know it is". In addition to the limited time spent as a family, six families experienced a lack of family vacations or weekend time together as a result of caregiving. This was evidenced in comments such 8S "We don't take family holidays. We just stopped doing that", "It was too difficult to go away and leave my Mom", "You can't make spur-of-the-moment decisions to go away. My husband has been retired for two years now but he hasn't been able to take advantage of that", "Up until last winter I could leave her for one night. I don't think as a  76  family we'll be going skiing this winter", "God, our family needs a holiday", and "For the past two years we haven't gone away over-night". Three families have in the past taken the elderly relative on vacations with them. However, these families have indicated that the care-receivers have now deteriorated both mentally and physically to a point where this is no longer possible. Working families and families with children have expressed concern that community services such as day-care are not offered on the weekends which is the time that those families would like to spend together. One caregiver commented on her need for services on Sunday: Anything that we planned on Sunday is shot because I have to take her to church. It took an hour to go over there and come back. I would have to be available for her so anything we planned for the whole day would be shot. Lack of privacy for family members was another area which was stressful for caregivers. One caregiver describes the lack of privacy experienced by her daughter: You should see my daughter's bedroom door. It's got so many "Keep Out" signs on it. "Don't go in", "Don't touch", "Please leave it". She (elderly relative) just ignores them all and she just goes in. Just goes through all the drawers. That's my daughter's domain. I don't do anything in her room. That is her bedroom. Nana can't see that. N8na figures she's got to go in and straighten all this lot out. It drives (my daughter) around the bend. Another caregiver expressed her feelings over the lack of privacy in her marital relationship:  77  When your mother or your mother-in-law is in the house with you it is totally different. It sort of changes your life. I'm not suggesting that we had orgies or anything like that but you have somebody there. It's not small children or anything but you know that she is there. It changes the things you would da Archbold (1982a) reports that caregiving can cause severe stress on the marital relationship. Competition between the parent and spouse for the caregiver's time is often a crucial issue. Caregivers acknowledge that caregiving provides mental strain for family members as well as for themselves. One caregiver stated: It is very difficult. If we want to go out she just starts to not talk to me. My husband gets upset because he knows she's mad at me and it is a vicious cycle... It's that type of situation that makes it hard because it's not only hard on you but it's hard on your husband too. He sees you giving up things. You should be able to go out when you feel like it and not have to say where you're going. You know you're an adult and I think it bothers him too in that way and also the freedom too. You just can't pick up and go. Archbold (1982a) suggests that the above situation is due to parental anxiety and dependence on the caregiver. She states that the anxiety and dependence are expressed in a manner which is perceived by the caregiver as restricting her privacy and freedom. Parental anxiety increases when the caregiver leaves the house. The anxiety is expressed in questions about the caregiver's plans. These questions increase the caregiver's resentment since they are interpreted as controlling and as an invasion of privacy. This  78  in turn increases the caregiver's frustration and feeling of entrapment Four caregivers expressed concern over the mental strain experienced by their children. Comments such as "They are not always super respectful because they get tired of her behavior now and again'' or "My children especially have suffered if that is the word. It doesn't seem right... suffer... but I'm sure that it affected them, all the hardships. It goes without saying'* indicate the strain experienced by the children of caregivers. One caregiver found that her elderly mother was jealous of the caregiver's contact with her own children and thus created a strained atmosphere for the caregiver and her adult children when they came to visit We have noticed even when they come it is almost like a feeling as if she feels because they are here and we are talking more and maybe she doesn't always get what is being said, it's as if she is being left out and she'll get into a little mood Right away the girls will say, "What have we done wrong?" It's just I think she is used to us looking after her so completely that she kind of has this little feeling when they are here and I know it definitely affected the atmosphere when the girls were here. And yet they put themselves out to really be kind to her because they love her but there is that very little difference even when they come to visit. Interestingly, this caregiver reported that her mother did not object to visits from her great-grandchildren but rather enjoyed their presence in her home. This observation was supported by another caregiver who also had young grandchildren who visited often. One particular aspect of caregiving which contributed to mental strain of family members was the care-receiver's disruption of family morning routines. Three of the  79  caregivers reported that the care-receivers spent considerable time in the bathroom when other family members were trying to get ready for work or school. Although the caregivers tried to encourage the care-receivers to remain in bed until the morning rush was over, they were unsuccessful in freeing the bathroom for other femily members. Brody (1985) has obtained findings which are congruent with the factors described here regarding the negative impact of caregiving on immediate family members. She reports that the family is affected by interference with its life-style, privacy, socialization, vacations, future plans and by the diversion of the caregiver's time from other family members. Archbold (1980), Cantor (1983), Robinson and Thurnher (1979), and Sainsbury and Grad (1970) have found that caregiver mental strain in the form of health symptoms such as anxiety, frustration, helplessness, sleeplessness, lowered morale and emotional exhaustion is related to restrictions on time and freedom, isolation, conflict from the competing demands of various responsibilities, and interference with life-style and social and recreational activities. In the present study, lowered morale end helplessness were not identified by the caregivers. Sleeplessness was identified but this was not addressed in relation to mental strain but rather in terms of physical strain. (Physical strain is identified as the second major category which leads to the use of respite care.) Although the caregivers in this study did not exactly use the same terminology as the researchers mentioned above, anxiety, frustration and emotional exhaustion were generally related to caregiver time and freedom restrictions, isolation, conflicting responsibilities and interference with life-style and social/recreational  80  activities. Caregiver feelings of responsibility, lack of freedom, communication difficulties between caregiver and care-receiver, and the negative impact of caregiving on immediate family members have been discussed in terms of the contributions that these factors make toward caregiver mental strain. Mental strain has been identified as a major category which leads to the use of respite care. The second major category identified by caregivers as leading to the use of respite care is physical strain. This category will now be discussed. Physical Strain Physical strain refers to the caregivers' feelings of physical exhaustion. Two factors which contribute to caregiver physical strain are altered sleep patterns and deteriorating health which according to the caregivers ere a result of the caregiving experience. Altered sleep patterns range from minor disturbances related to "listening" for the care-receiver in case assistance is required to more severe disturbances related to anxiety. Deteriorating health is manifested in several ways. These include: 1) physical injury due to caregiving activities, 2) recurrence of past ailments, 3) neglect of caregiver physical needs in favour of providing care to the care-receiver, and 4) physical illness requiring bed-rest. The impact of these factors on the caregivers will be discussed separately. Altered Sleep Patterns  Six out of seven caregivers experienced alterations in their sleep patterns as a result of caregiving. Several reasons were given for this occurrence. The most common  81  reason and the least stressful was that the caregivers tended to "listen" for the care-receiver during the night In case the care-receiver needed any assistance with toileting. One caregiver "listened" for a call-bell that her mother would use if assistance was necessary. Two caregivers experienced more severe forms of sleep disturbances. These caregivers spent many sleepless nights due to anxiety. One caregiver reported: I do realize that I get hyper and I don't sleep very well. I think that it is a family trait, if it bothers you, it bothers you in the night-time. Similarly, the other caregiver stated: I would get up In the middle of the night end I would hear noises. Mind you I did that when she was on her own because I would be worried about her and then I would go in the middle of the night to check on her because sometimes I would dream about her and then I would go and check her. I would have to wake up my husband too. But when she came to live with us I would be on edge because she might have had an accident like you know a bowel movement Oh, there were days I slept well. One caregiver described her frustration of being awakened at night by her elderly mother, who, through being disoriented to time, tended to set the kitchen table at all hours: Well the last time was last week and I particularly felt tired that night. At 2:301 was wakened by her out in the kitchen setting the table. Well I had too much on my mind that night and I never did gat back to sleep again until it was time to get up practically. It is just like when you have children you are tuned Into every sound.  82  Well now it is the same thing over again and you're tuned into it and wake up and sometimes you can get back to sleep and sometimes you can't That affects my husband as well as me you know. It's not just me. This caregiver also had sleep disturbances when her mother wes bothered by her arthritis and moaned and groaned during the night. Again, this woman indicated that her husband was also affected. According to Soldo and Myllyluoma (1983), the exhaustion experienced from nights of interrupted sleep may eventually deplete the family's resources for coping with the care needs of the elderly relative. Although the present study did not find a direct correlation between altered sleep patterns and en inability to cope with the care-receiver's cere needs, the six caregivers, mentioned above, identified altered sleep patterns as a factor which contributed to their physical strain and ultimately to their use of respite care. The other factor which was identified by caregivers as contributing to physical strain was deteriorating caregiver health. Deteriorating Health  Four of the seven caregivers indicated that they experienced various deteriorations in health since they became caregivers. Exhaustion, physical illness ami injuries were identified as problems (Archbold, 1982a; Fengler & Goodrich, 1979). One caregiver reported that she injured her back while performing physical care for her elderly relative. Another caregiver claimed she tended to lose her voice from "tension and frustration". Still, another caregiver reported Just before Mom went into the home (permanently) I had trouble with dizziness  83  and I mean real dizziness. You know everytlme I moved my head the room would spin around. Now whether that was connected with nerves I'm inclined to be one of these people who put alot of things down to nerves and emotions. I really can't say whether it was a coincidence or whether the relief after she went (into a facility permanently) has cured the dizziness. One caregiver experienced a reccurrence of a past ailment: When she first came here I had signs of an ulcer which reccurred from years ago because I couldn't cope with her move here because it took me awhile to get used to that. I didn't realize how bad she was, imagining things. I think it does affect your health in a way. One caregiver described how her own physical needs were neglected in favour of providing care for her mother: I haven't been feeling too well lately- I think I've got arthritis and sometimes when you come home you think, "Oh, gee If I could l8y down in bed and die". You know you can't. You still have to get at least your mother's supper ready. You know there is still that responsibility. It's always there. Although she has no physical illnesses at present, one caregiver is aware that she may develop illnesses in the future due to caregiving. She states: I have a lady doctor. Each time I go in with my Mom she will always say "And how are you?" She is obviously waiting for something. I can see that now. I realize that she is looking. I hadn't really thought about it before but it probably would have an adverse effect on me at some point if too many things did get me down.  84  One caregiver reported that she became ill during the first week that she utilized the respiterareservice. I was sick the first week. All the stress of having to put Mom in a care facility. It was definitely that. It was tension I think. My face swelled up. I was actually in bed for the week so I would have been sick on my vacation if I hadn't had that week. Altered sleep patterns and deteriorating health were the two factors identified by caregivers as contributing to caregiver physical strain. Physical strain in turn comprised a major category which led to the use of respite cere. The influence of multiple support systems, the third ara] final category leading to respite care use, will now be discussed.  Influences nf Support Systems All of the caregivers who used respite cere had multiple support systems available to them. These support systems were immediate family support, support from health care professionals and support from community services. Immediate family support was offered to the caregivers in the form of emotional support but physical support was minimal. This minimal physical support by immediate family members was identified as a factor which led caregivers to use the respite care service. Support from health care professionals, on the other hand, was favourable since respite care information was generally obtained from health care professionals and this contact led to respite care use. Community service support was less favourable since this support system was not initially evident to caregivers since they as a group were generally ignorant of the service options available. Once the caregivers became aware of at least one community service,  85  through their various contact sources, information regarding other services and respite care was also obtained. Since the factors associated with the three major support systems were identified equally by the caregivers es factors which led them to use respite care, these support systems have been categorized together under the heading "influences of support systems". The discussion of this category will begin with the "immediate family support" factor.  Immediate Famify Support Immediate family support may be viewed in terms of emotional and physical support. Emotional support from immediate family members was experienced by all of the caregivers but physical support was experienced on a limited basis. Whereas emotional support was cited by caregivers as helping them to tolerate the strain of caregiving, the limited physical support received from immediate family members was identified as a major reason for seeking respite care. The impact of both of these types of support on the caregivers will now be discussed separately. To begin with emotional support, spouses in general were especially supportive of caregiving and were also very supportive of or were the initiators of the initial decision to pursue caregiving in the home. One caregiver describes her initial decision: Actually I thought about what I would have to give up because I knew she required alot of careandl knew it wouldn't be so easy to take off 8nd do things that we h8d been doing since we moved out here from home. But my husband wanted her to come out here too. He and my father were really close and t think he felt a responsibility to my father too.  86  Another caregiver described the support provided by her husband. I had a tremendous support from my husband and kids in a way. But my husband was really supportive in that he helped me. He would look after my children. He would drive them to wherever whereas I would be getting her dinner ready or something like that Only one caregiver did not have immediate family living with her. However, this caregiver received much emotional support from her daughter who lived adjacent to her mother in the same duplex end could be reached via an intercom system. Although one caregiving couple were and still are supportive of each other, they were not prepared for the longevity of their caregiving experience as evidenced in the following comment: You probably won't talk to too many people who have had their mother-in-law living with them for 17 years. It has been such a long-term investment of time. We took it on ourselves. I think we thought ft out in the beginning but we didn't expect that she'd be around that long It just didn't appear in the state that she was in at 76 that she would Although emotional support from immediate family members was evident, physical support was offered on a more limited basis. Physical support in the form of preparing meals and spending short periods of time with the care-receiver was offered but support relating to personal care activities for the care-receiver was not evident in five caregiver situations. One caregiver commented: My husband, he doesn't actually do the things for her. You couldn't expect him to do  87  the personal things for her like I do but as far as driving around and extras for her, he's right there. So I've got to give him lots of credit Caregivers indicated that their young children were generally supportive of caregiving and some were willing to assist with caregiving. One caregiver commented on her children's caregiving behavior: They look out for her and look after her. A couple of times (daughter) and I are out in the evening.  (husband) and  (son), our 14 year old, is home and  will cook e complete meal for himself and he'll feed her. Adult children of the caregivers also offered support to the caregiver even though they did not reside In the caregiver's home. One caregiver commented: I have one son. He's 21. We are going away on the weekend and I have a home-maker coming in because my son has to work this weekend. He's going to come over Sunday when the home-maker is finished and he'll look after my Mom until we get home cause we won't get home until really late. So he'll make her dinner for her. He's pretty good. Although the adult children of caregivers were willing to help the caregivers, the caregivers themselves did not frequently ask for help from their children. Comments such 8s, "I don't like to ask them too often because their lives are full. They just do what they can when they can'', "to get him to stay over-night and to be here all the time is maybe just a little much to ask", and" I was saying how difficult it was to go away and leave my Mom because it meant that (daughter) would have to check on Mom all the time'', illustrate the caregivers' reluctance towards asking for help.  88  As evidenced above, the caregivers received much emotional support from their immediate family members but actually received limited physical support. This limited physical support from adult children living away from home end from siblings of the caregiver (see subsection entitled "Lack of Sibling Support") were factors which contributed to the caregiver's need for respite care. In other words, without the physical support from those family members, the caregiver was unable to leave the care-receiver unattended for long periods of time without the use of respite care. A second major factor, support from health care professionals, also contributed to the caregivers' use of respite care. This factor will now be discussed. Support from Health Care Professionals  Support from health care professionals was obtained by the caregivers in the following manner: 1) they received their initial information about respite care from health care professionals, 2) they were encouraged to use respite care as an interim measure during their waiting period for care-receiver permanent placement 1n a facility, and 3) they were encouraged to userespite care for both vacation relief and 8 rest at home. Six of the seven caregivers received their initial information about respite care from health care professionals. Two caregivers were informed by their doctors, one caregiver by the nursing personnel in a facility where the caregiver was inquiring about permanent placement, another caregiver by community nurses when she was inquiring about other services, and two caregivers by a family member who worked in a facility which offered respite cere. Only one caregiver received her initial information from a  89  friend. Three caregivers were encouraged by community nurses from the health department to use respite care 8s an interim measure during their waiting period for the permanent placement of their care-receiver in a facility. On three occasions, the community nurses also recommended the use of respite care for a rest at home in conjunction with the vacation relief that the caregivers were seeking. One caregiver expressed her appreciation of the community nurses' suggestion: She (community nurse) said it would be nice to have an extra week at the beginning to do the laundry and all th8t because she said you need that time to unwind. And you know she was so right because I was sick the first week. All the stress of having to put Mom in a care facility. I was actually in bed for the week so I would have been sick on my vacation if I hadn't had that. So I am really grateful to (community nurse). My husband said to me, "We are not going to be away three weeks. Why would you want to put her in there for three weeks when two is all that is necessary?" So after much deliberation I phoned  and she said, "you  need that extra week" and she wouldn't let me change at that late time. I should have thanked her. Since health care professionals generally introduced the caregivers to respite care and also supported their use of this service for various purposes, support from health care professionals was viewed by the caregivers as a major factor which led them to use respite care. A third factor, support from community services also contributed to the caregivers' use of respite care. This factor will now be discussed  90  Support from Community Services Although support from community services was available to the caregivers at the time of their inquiries about respite care, a general lack of knowledge of community services actually led the caregivers to use respite care. The general lack of knowledge of services was evidenced as follows: 1) caregivers were initially ignorant of the type and availability of community services due to a lack of media advertisement of services, and 2) caregivers used community services immediately after they were informed of the various services available. Once the caregivers became aware of one community service (through inquiries to health care professionals or friends) and used at least one community service, they then received information about other community services. This was evidenced as follows: 1) inquiries pertaining to community services led to information about respite care, and 2) familiarity with the respite care facility through the previous use of day-care at the same facility encouraged respite care use. Although the caregivers used community services once they were aware of them, the employed caregivers expressed concern over the dearth of transportation services available to transport care-receivers to community services. The discussion will now turn to a more detailed description of the above mentioned aspects which Influenced the caregivers' support from community services. To begin, all of the caregivers voiced a major concern that community service information was very limited. Specifically, they were concerned over the lack of visible advertisement in the newspapers, on the radio or television which pertained to available services. One caregiver who worked in a long-term care facility commented:  91  I asked for her to be assessed because I knew what was available. If I didn't work there or if we didn't offer the service I wouldn't have known about it as it isn't exactly advertised is it. Before our place came into existence there wasn't even day-care. There was only  which is a senior's place where you have to be  able to totally be able to take care of yourself. At the community centres you couldn't take most of the old people. Another caregiver stated: If there had of been advertisements for respite care in the newspaper or on the radio or T.V., I would have used it perhaps a year earlier. Another caregiver described her situation: Until my doctor explained what an intermediate care facility was I thought that it meant that was where a person went to a convalescent hospital. I had never heard of such a thing. So if I had known I would have put her name down long before I did but I just didn't know what it was. Still another caregiver commented: There are alot of people who are looking after their parents in their home that really don't even realize that there is something out there for them or want to help because I know when I took Mom to the doctor and I started telling him that she was going to day-care he didn't even know ebout it. He was unaware. Only one caregiver indicated that she became informed of services through the newspaper. However, she did state that her information pertained to facilities available in communities outside of the region where she lived.  92  When informed of the services available, one caregiver used home-care services periodically, one used the Kinsmen service (which offered a sitter to enable the caregiver to leave the care-receiver for several hours), one used the Homemaker service, one used a senior's center, another used Meals-On-Wheels periodically (for provision of a diabetic lunch), and six caregivers used day-care services. Two caregivers used the day-care services only as an interim measure while waiting for permanent placement of the care-receiver into a facility. For other caregivers, day-cere was one of the factors which enabled them to continue employment. One caregiver combined day-care and home-maker services in order that she didn't have to leave work to come home for lunch three days a week. Two employed caregivers commented that transportation to day-care or senior's centers was a problem for them if the service was not offered for the entire day. One caregiver stated It's very hard to get a ride for her to (day-care). That was a difficult thing. Apparently they have one system and they are really overbooked and there is a long waiting list to even get on that. They offer you these services but in many cases you have no way of getting the person to the services. Another caregiver described her dilemma: Transportation I find is difficult like if I had someone to help to get her even over to day-care. I've arranged on the Monday to take her over... but on Thursdays I still have to take her. I felt very guilty at work being off so much. Archbold (1980) has also observed that transportation services are necessary to relieve  93  the stress of parent-caring. As evidenced in the discussion of "support from health care professionals", six out of seven caregivers received their initial information about respite care through inquiries regarding other services. Additional information pertaining to respite care was obtained by five caregivers when they used services which shared the same facility with respite care. Caregiver and care-receiver familiarity with the respite care facility through the previous use of day-care at that facility made the decision to use respite care less stressful for five caregivers. Comments such as," it also helped that she was familiar with the place and could still go to the day-care for a few days a week where she knew and had friends instead of going into a strange place", and "she knew (facility) and she knew the girls in the day-care... so she didn't really feel that she wes in there alone" indicate the caregivers' satisfaction over facility familiarity. This is not to say that the caregivers would not have used respite care if they were not familiar with the facility. As one caregiver stated: If it was (facility) and I didn't know about it and used it, it probably would have worked out well because it is a good place but then maybe other places aren't that good. But I think if you need a vacation and that's the only way you are going to get one, you have to use it. You have to use what is available. As evidenced in the above discussion, support from community services led to the use of respite care in the following manner: 1) inquiries into and use of community services evoked information about respite care, and 2) use of community services which  94  shared the same facility as respite care led to additional respite care information. To summarize this category, the initial lack of information regarding available support from community services, the subsequent acquisition of community service knowledge from various health care professionals and the lack of physical support offered by immediate family members were identified by cergivers as contributing factors that led them to use the respite care service. In this section, the factors leading to respite care use have been classified under three major categories. These factor categories can be summarized as follows: 1) mental strain is experienced by caregivers in terms of feeling constantly responsible for the care-receiver, having limitations placed on personal time and social activities, having communication difficulties with the care-receiver, and having limited family privacy and time away from the care-receiver; 2) physical strain is experienced by caregivers in terms of having altered sleep patterns and deteriorating physical health as a result of caregiving; and 3) the Influences of support systems are experienced by caregivers in terms of having a lack of physical support from immediate family members, and receiving informational support from health care professionals and community services regarding the respite care service. This concludes the discussion of factors leading to respite care use. The next section will discuss respite care In terms of the caregivers' experience with this service. Respite Care Experience Caregivers described their respite care experiences in terms of their purposes for using the service, their satisfaction with the service, and the lack of responsibility that  95  they felt during respite care use. These three aspects of the respite care experience will be discussed separately starting with the caregivers' purposes for using respite care.  Purposes for Respite tare  USR  Caregivers had two purposes for using the respite care service. The first purpose was for vacation relief while the second purpose was for a rest period at home. All of the caregivers in this study used respite care for vacation relief. Six of the seven caregivers simultaneously used this service for a rest period. One caregiver commented on her reasons for respite care use: I went to visit my daughter. I wouldn't have been able to go if I hadn't have been able to put her in the swing bed.  IW8S afraid of her  either falling or not being able  to get up if she did fall. It got to the point where I couldn't have left her unless she wes in some place. I was actually only going to go away for two weeks but she (community nurse)raidyou need it and she said put her in for the whole month and then you will have a week before and a week when you get back to relax and have some time to yourself. As far as Mom knew I was away. I just took it for myself. Similarly, another caregiver stated: We went over to Salt Spring Island. We had a little break away but the thing is you don't always like to go away. It's kind of nice just to be on your own here. So we reserved part of that time just to be home by ourselves. You have no idea what kind of a treat that is after 10 years of living with her. Another caregiver reported:  96  It was the first family holiday that we had in seven years at least. We only went away for two weeks but I had asked for three weeks to get me ready. I actually was sick the first week. I was actually in bed for the week so I would have been sick on my vacation if I hadn't had thai Although the literature identifies hospitalization of a family member and medical screening and services for the care-receiver es two additional purposes for respite care use, none of the caregivers in this study used the services for those reasons (British Columbia Ministry of Health, 1980; MacCourt & Southern, 1983; Robertson et al., 1977). Their prime reasons for respite care use were limited to vacation relief and a rest at home. Caregiver Satisfaction with Respite fare  All of the caregivers were very satisfied with their respite care experiences once they got over their initial anxiety and guilt feelings regarding respite care placement Feelings of anxiety and guilt were experienced by caregivers while making the decision to use respite care and also during the initial few days of respite use. Caregivers cited the support provided by nursing personnel in the respite care situation and the care-receivers' acceptance of the respite care facility and service as factors which helped to alleviate their Initial anxiety and guilt To begin this discussion, the decision to place the elderly relative into an institution for a short-term stay and the actual placement was not an easy task for the caregivers. Two caregivers initially experienced strong guilt feelings regarding their desire for respite care which led them to delay their applications for the respite care  97  service. One caregiver describes her feelings: I felt guilty at even applying at (facility). It took me months to pull it together. Somebody told me you have to do it. So I started and then I got the forms and I didn't do anything about it I just sat on those forms for about two months. I couldn't bring myself to do it. I felt so guilty. I kept thinking we're a family. We need to have these break times together. Our son is H now and he is going to be doing his own thing soon. He doesn't want to be with us. So we've decided that we give her a really good home, really good care and I think we really deserve that break but she doesn't see it that way unfortunately. So it was almost the end of August before I pulled It all together. I almost blew it by leaving It because my husband Is home all summer. This enxiety and guilt over the desire to place the elderly relative was also present during the initial few days of the respite care period. Thus, four caregivers opted to stay at home for one or two days before they began their vacations in order for them to be assured that the care-receivers would settle into the facility without too much difficulty. One caregiver described her situation: I wanted to be sure that she was okay for the first few days before I went away because she gets a little anxious and If she gets into one of her states she can get really confused and agitated and gets things out of all proportion. But I guess I was thinking of all the things that could go wrong but 1 found when I got there I found the Head Nurse knows exactly what I am talking about so it worked out well. I went to visit her the first day in the evening and the next day I just phoned.  98  Similarly, another caregiver stated: We waited two days. Now this time she knows the ropes, she knows she likes it and she is looking forward to that month in there again so we may leave the next day and just give her one day to settle in but we didn't know last tima Upon placement, three caregivers found that the support provided by the nursing personnel in the respite care situation helped tremendously to decrease their guilt feelings. One caregiver stated I phoned the Head Nurse and said, "This is it. We're going." She said "I see why you wanted her in here". And that made me feel so much better because at first it looked as if IW8S trying to force this perfectly sane lady into a care facility. I said, "You don't know how good that makes me feel". And it did. In spite of the initial concern regarding the use of respite care, all of the caregivers were generally satisfied with their respite care experiences. Caregiver satisfaction was evident in comments such as, "I think the experience was a God-send", "I think it was a life-line", "I felt at ease when I went away", "It was a positive experience. I really think that everybody needs it. To me the crux of the whole matter is if the caregiver doesn't have this respite bed then it would have to be permanent placement", and "She was well looked after". Six of the seven caregivers reported that the care- receivers else were satisfied with their respite care experiences. Comments such ss, "She didn't complain an ewful lot about (facility) which I thought must have been really good or else she would have complained about it. I thought it was very good", "She said the nurses were kind and that  99  even if she didn't go and get her tea that they would bring it to her room because sometimes she didn't feel like it but they would check up on her", "She said the food was actually better there than it is at home", and "She walked around and made friends. So immediately she took care of others. She felt needed as well". Only one caregiver queried whether the respite care experience was satisfying for the care-receiver. She stated: It was more difficult for her than me but I don't know whether or not it was a very pleasant experience for her. Generally speaking she said the care was good but I think she might have interpreted it as a form of rejection. This caregiver acknowledged that cultural differences contributed to her mother's ambivalence to the experience. She commented: The diet is the big problem while she was there. My mother eats anything but she prefers Japanese food and there is no care facility that serves Japanese or somebody who speaks Japanese. That would be my one concern but I guess that is up to the Japanese community to set up a care facility. My mother doesn't speak English at all but there was another Japanese woman there and they became friends. If my family had of looked after her then it would not have been so hard on her. To conclude the discussion, caregivers are definitely satisfied with the respite care experience once they get over their initial guilt and anxiety regarding care-receiver placement in a facility. Lack of caregiver responsibility during respite care use will now be discussed.  100  Lack of Responsibility Lack of responsibility was expressed by caregivers in terms of not feeling responsible for the care-receiver during the time of respite care use. During this period of time, the caregivers turned over their responsibility for the cere-receiver to the respite care facility and to other family members if they were available. When using the respite care service, ell of the caregivers stated that they were relieved of the feelings of responsibility that they usually felt towards the care-receiver. The following comments were made: I felt at ease when I went away because I knew she was in (facility) and I knew even if she got sick they would know whet to do. You know there was no worry there because I felt she was in good capable hands and if anything happened they would call me. i had left the number. The first couple of days I was kind of waiting for the telephone call but then after that I was fine. Except a couple of times they put the light on the phone if there was a message and I just about freaked. The experience left less responsibility for my own children. Another caregiver stated: I was relieved from the responsibility. I knew she was well taken care of. I just couldn't have gone away and just left her on her own but being in the respite care setting I knew that I didn't have to worry about her at all. Still, another caregiver commented And it is nice to be completely free of the worries of having her. This is the first time in 10 years that we've had a break except for the odd night or two.  101  Visits to the care-receiver by other family members during the respite care period also helped the caregivers to feel a lack of or less responsibility towards their elderly relatives. They felt that the other family members could deal with the situations that could arise during the time that they were away and thus they would be called away from their vacations only for an emergency situation. In summary, caregivers are satisfied with their respite care experiences. Relief from the responsibility of caring for the care-receiver is experienced during the time that they utilize the respite care service for vacation relief and rest periods. This concludes the discussion of the caregivers' experiences with respite care. The discussion will now turn to the consequences of respite care use for the caregivers. Consequences of Respite Care Use After using the respite care service, caregivers experienced four major consequences. These consequences, which were identified by the caregivers, were as follows: 1) future plans for multiple respite care use, 2 ) altered caregiver/care-receiver relationships, 3 ) increased use of services, and 4 ) caregiver plans for the future. All of the consequences were viewed to be equally important by the caregivers. The four consequences will now be addressed separately beginning with caregiver plans for multiple respite care use. Plnns for Multiple Respite Care Use All of the caregivers planned to use the respite care service repeatedly in the future for the purposes of vacation relief and a rest at home. Although the caregivers anticipated relief from caregiving through multiple respite care use, there were two  102  factors which potentially decreased their relief from caregiving. The first factor involved the long waiting lists for respite care which potentially decreased the caregivers' chances for multiple service use each year. The second factor was the caregivers' misinformation regarding the yearly time allotment for respite care use. As mentioned above, all of the caregivers planned to use the respite care service repeatedly in the future. Three caregivers, at the time they were Interviewed, were scheduled to use the service for a second time. One caregiver had already used the service three times. Although the caregivers used respite care mainly for vacation relief during their first exposure to the service, they planned to increase the amount of time for resting at home during subsequent uses. One caregiver commented I would have used it es much as I could for two week stretches. I wouldn't want to use it for shorter lengths of time. It would take me two weeks at least to get my life or act together again. I would use it for vacation time a couple of times a year like I've already mentioned but then I would use It for rest times... two weeks et a time as much as possible. Inherent in the caregivers' plans for multiple respite care use was the caregivers' anticipation of relief from caregiving. This is evident in comments such as, "Being able to plan for the next break seemed to give us a feeling of some freedom. You know knowing that you were going to have e future break really helped"," having the break was a mental lift before going and after coming back", and" we could plan on having two weeks a year but it could make a difference to our lifestyle especially now that she is deteriorating". Only one caregiver's actual plans for future respite care use were discouraged by  103  the facility offering respite care. This caregiver planned to use respite care for a five-day vacation but W8S unable to obtain the service on the grounds that respite care Is reserved for longer periods of time. Instead, this caregiver was offered and received a 24-hour homemeker service. Three caregivers expressed concern over the long waiting lists for respite care. One caregiver described the situation: Just to show you how they really need more of these 8fter we came b8ck in May I thought well maybe I better speak up now. I plan these visits months and months ahead of time. I think it was in October or November that  advised me to book it  and I used it I think in April. So that was about six months wait at least. But I hear it is about a year's wait now. I could see that for a year ahead to know your exact dates could be difficult. Similarly, another caregiver commented: But just to show you how they really need more of these. After we came back in May I thought maybe I better speak up now for 8 holiday for two weeks or even three in September or October but when I contacted them, they were booked solid until December the 2nd. You can't always plan that far ahead and that is the only room. One caregiver couple did not have any concerns over the waiting list since they were booked to use the respite care service in January for the second time. They attributed their ease of obtaining respite care to the time of year that they pursued the service.  104  Although the caregivers were aware of the long waiting lists for respite care, they as a group were not informed of the yearly time restrictions for the service. Only one caregiver knew that the service was offered for a maximum of six weeks per year. This caregiver slso indicated that she would use the service for the maximum time allotment each year and would have used it more if it were possible. Comments such as the following indicate the misconceptions of several caregivers over the time factor for respite care. I think they are so booked. They've got so many people wanting it that they would prefer it if you could try to keep it to two weeks and only use it twice a year. and I would like to see you be able to use it for shorter periods of time. I think they only allow you two weeks I think as the least amount of time. Due to the misconception of the amount of time permitted for respite care use, one caregiver was concerned that she may potentially abuse the service if she asked for more than a couple of weeks a year. She stated the following: If we took a winter vacation I would try and get a few days again but how that works I don't know. I was grateful for it and if I spoil it by doing it too often... I don't want to blow it because I would like that opportunity again next summer for us to have a vacation again because we like to camp. This concludes the discussion of caregiver plans for multiple respite care use. The second consequence of respite care use, altered caregiver/cere- receiver relationships, will now be discussed.  105  Altered Caregiver/Care-Receiyer Relationship All of the caregivers experienced an altered caregiver/care-receiver relationship upon return from respite care use. This alteration in the caregiver/care-receiver relationship was manifested in three ways. The caregivers: 1) returned to the same relationship but with a feeling of mental relief, 2) returned to a situation where the care-receiver did not appreciate the care provided by the caregiver, or 3 ) returned to an improved caregiver/care-receiver relationship. In two cases, the caregivers experienced a combination of 1) and 2) above. For those caregivers who experienced an improved caregiver/care-receiver relationship, this improvement was due in part to the caregivers' realization that they were satisfied with the care that they provided which gave them a more positive outlook towards caregiving, and to an improvement of the care-receivers' mental health which made caregiving less stressful. Although three caregivers did return to the same relationship, they treasured the mental relief experienced during the period of respite care. One caregiver described her situation: Oh, it was wonderful to have a break. We felt so rested actually all three times but we soon got back into the same routine but having the break was a mental lift before going and after coming back. Another caregiver stated: Back to the same routine really but I know it was a relief to get away from her and than ah it didn't take very long before the same pattern developed after I got back and she started shall we say getting on my nerves and finding her difficult.  106  Similarly, another caregiver commented, "We sort of got beck into the same routine again. Yeah, i can remember saying I feel like I haven't been away". Two caregivers were concerned upon return from the respite care period that the care-receiver enjoyed the experience and did not appreciate the cere that the caregiver provided, in fact, one care-receiver has indicated that she would like to live at the facility on a permenent basis. The caregiver for this cere-receiver described her feelings towards the situation: I think in some ways it's made life more difficult for us because she sort of had such a marvelous time there. She told them that the food was actually better there than it is at home. Well, at this stage in the game, after being with us all this time, you kind of wonder what you did wrong that somewhere like that would be a better experience than staying with us at home.  's (husband) very happy  (with her decision to seek permanent placement) and I felt very, very guilty. I've come to terms with it now... I hate the idea It will be most uncomfortable but I can't do anything about it. She likes it there... We tried to tell her of the negative side but she's got it into her head that she wants to go. It is something I have to live with. Brody (1985) attributes adult children guilt over placing a parent into a nursing home to a disparity between standards and expectations on the one hand and the unavoidable realities on the other hand. Thus, when caregivers state, "I know I'm doing everything that I can for my mother, but somehow I still feel guilty", their fantasy is that "somehow" one should be able to do more (p.26).  107  Although one caregiver did not experience a lack of appreciation of her care by the care-receiver, this women had a negative experience shortly after her return home from respite care use. Since her mother died shortly after respite care use, this caregiver was convinced that somehow the service contributed to her mother's death. Her tormented comments indicated her extreme guilt and anxiety during her grieving period I can't help but think that I wasn't a good daughter to her for putting her Into a respite care facility even though I know i needed a break. My family think that the respite care facility is what did her in. She died of a bleeding ulcer. I asked the doctor if anything would trigger the bleeding ulcer like the respite care experience of me sort of rejecting her. The doctor said that wouldn't do it. You know I have to believe that for my own sanity. I must believe that I was not to blame. I'm not saying that the respite care facility or experience was to blame. I think my family should have looked after her while I was away. I needed the break and that was that but I'm still feeling so guilty. Three caregivers found they experienced an improved caregiver /care-receiver relationship upon return from the respite care period. One caregiver described her feelings: I think it made me a better caretaker after I came back. I was a way better caregiver that's the word and I think my Mom benefited ami I think my whole family did It brought the family closer and most important it gave me a much needed break and it seemed as though I was a better caregiver until Mom died. There was no strain in our relationship when we got back together.  108  The improved caregiver/care-receiver relationship was due in parttothe respite care experience providing time for the caregivers to reflect on the emotional and physical care that they provided to the care-receivers. During this reflection period, three caregivers realized that they were satisfied with the care that they were providing and thus this gave them 8 more positive outlook towards caregiving. Archbold (1982a) has similarly found that many caregivers are able to find some meaning in the caregiving situation. Assigning a higher meaning to caregiving increases the caregiver's self-esteem and motivation. One caregiver in this study commented: I see a big difference in her from when she first came and I know that if she had gone into a home right after my father died she would never be as well as she is now and I feel good about that because I know that I participated in her growing as much as she has because after the stroke my father looked after her and never pushed her to do anything or made her do anything or got her out or took her out. I havegot some self-satisfaction of seeing her achieve things. Similarly, another caregiver stated: She enjoyed the people (during respite care) because she turned out to be more mentally alert than alot of them and I think that has to do with the environment here because she is always surrounded by kids. There is lots of stimulation going on here. Three caregivers commented on an improvement of the care-receivers' mental health upon return from the respite care period which has made caregiving less stressful. One caregiver commented on her elderly relative's new-found interest in life.  109  You could never get her out before but now she goes to day-care. It Is unbelievable it is like she is two different people. So the times now have made the difference so incredible like having day-care or respite care. It's the intense social thing that she now goes for. This subsection has indicated that an alteration in the caregiver/care-receiver relationship occurs as a consequence of respite care use. This alteration is either manifested as a return to the seme general relationship but with less caregiver mental strain, a return to a relationship in which the caregiver realizes that the care-receiver does not appreciate the care provided by the caregiver or a return to an improved caregiver /care-receiver relationship. In the following subsection, an increase in caregiver use of services, which is the third consequence of respite care use, will be discussed. Increased Use of Services  An increase in the use of services is another consequence of respite care use. Although caregivers generally increased their use of community and respite care services, five caregivers also sought permanent institutionalization as a service. This move towards permanent institutionalization was the result of caregiver familiarity with the permanent placement/respite care facility during respite care use. The increase in caregiver use of community services wes es follows: three caregivers increased the amount of day-care that they received, one caregiver increased the amount of help from the Kinsmen sitters and another caregiver utilized the 24-hour homemaker service on several occasions. The caregiver who used the 24-hour  110  homemaker service described her mother's positive response to this service: The homemaker was very good and Mom quite enjoyed it. She enjoyed the company and having someone to sort of all to herself and she made good meals and cleaned up the house abit which was nice... When we came home she was in a really good mood. As Indicated in a previous subsection, the respite care experience of caregivers has led to future plans for or use of this service by all of the caregivers. Due to the caregiver/C8re-receiver familiarity with specific respite care facilities, four of the caregivers specifically indicated that they would request to use the service at the same facility on future occasions. One caregiver commented: I know what's involved and she knows what it's like. I'm sure she will remember the place again once she gets there even though she forgets most things... So I don't think it would be too difficult next time and I wouldn't go through the grief that I did this time because I know that she was well cared for and she did enjoy it the best that she enjoys anything at all. Thus, familiarity with the respite cere facility and service also has the potential to decrease the anxiety experienced by the caregivers during the first few days of their Initial respite care experience. Caregiver/care-receiver familiarity with the respite care facility prompted five (out of seven) caregivers to seek permanent placement of their elderly relatives into the facility. According to MacCourt and Southam (1983), temporary admissions through respite care provide the care-receivers and their families with an opportunity to develop  111  a realistic picture of the nursing home setting, in a non-threatening situation. Participation in respite care serves to physically and socially acquaint recipients with nursing home living and psychologically prepares them for the possibility of permanent placement. In this study, one caregiver expressed her feelings regarding facility familiarity: I think being able to use that respite care is also good for them that when they do say perhaps have to go into 8 nursing home, it's not that major transition that they ere into this place that they've never ever been before you know and there is all these walls and rooms and corridors and cafeterias that they've never been in their life. At least she's been thereand she was in it last year and she'll have been there again this year before she goes in and I think that's good Similarly, a caregiver, who has already placed her mother permanently in a facility, used the respite care experience to familiarize herself and her mother with the facility. This subsection has discussed the increased use of community services ss a major consequence of respite care use.  Caregiver/cere-receiver familiarity with the respite  care service and facility was also identified as promoting multiple respite care use and/or permanent institutionalization of the elderly relative. The discussion will now turn to "plans for the future", the fourth end final consequence of respite care use.  Plans for the Future After enjoying e lack of responsibility for the care-receivers during the respite care experience, the caregivers began to look at the impact of prolonged caregiving on their lives. Specifically, they began to query 1) whether they were willing to continue  112  caregiving on a prolonged basis and if so under what conditions, and 2) whether they were willing to accept permanent institutionalization of their elderly relative as an immediate or future option. Inherent in these queries were the caregivers' Questions of whether community and respite care services could meet their needs on a prolonged basis. Upon analysis of their own situations, all of the caregivers found that the community services did not meet their needs and five of the seven caregivers, therefore, decided to pursue permanent institutionalization. Several reasons were cited for caregiver dissatisfaction with community services. They were: 1) caregivers generally lacked information regarding the types and availability of services (the caregivers thought this could potentially lead to the under-utilization of services that could aid them with caregiving), and 2) caregivers generally found there was a limited availability of the services that they did use. For those caregivers who opted for permanent institutionalization, the decision to place the elderly relative in a facility permanently was particularly stressful since health care professionals did not provide support. In spite of this lack of support, caregivers were able to anticipate en improved relationship with their elderly relatives as a positive outcome of permanent institutionalization. Regardless of their specific plans for the future, all of the caregivers included the respite care service in their plans since they claimed that this service, used on an interim or ongoing basis, provided relief from the strains of caregiving. In the following paragraphs, the above aspects of caregiver plans for the future will be discussed in detail. To begin, Archbold (1982a) reports that the limitations of freedom experienced by caregivers extend into the future. Moves, retirement plans and  113  vacations are all affected. Thus, caregivers may experience frustration, resentment, and the fear that time is running out for them. These results are also found in this study. All of the caregivers expressed much concern over the prospect of prolonged caregiving. Particularly disturbing for the caregivers was the thought that their elderly relative may continue to deteriorate mentally and physically which would increase the amount of care required. One caregiver described her ambivalent feelings towards continued caregiving: I'm not sure that I could handle it if she was very, very ill and I had to provide nursing-type care for her. I don't think I could do that. I can't Maybe I would because of the way I am when things creep up on me. I just adapt and do it. If that ever happened to me In the future I would have to really give a lot of thought to providing that kind of care. It would mean I would have to leave my job and then our lifestyle would really change that's for sure. Similarly, another caregiver stated: I don't know how long I can keep on this way. Some days you know everything seems to be going good and she's in a good mood and you think "Gee, maybe I can handle it" and then when it gets into those really bad periods of time that she goes through you just think to yourself "I just can't handle it anymore". Another caregiving couple who have been caregivers for 17 years stated: So for the last two or three years, it was sort of strained. She's getting older and we are also getting older and our life is passing us by and it's only in the last two or three years that we found that not that she's particularly in the way but it would be nicer if we were on our own. We don't actually resent her but we feel we've done  114  enough and yet we don't seem to see any end to it. I have this strange idea that I'm going to die before she does and I'll never have lived a normal husband and wife relationship without my mother being with us. All of the caregivers generally indicated that the community services available did not meet their needs. One caregiver stated that the amount of available services was a factor: I don't know if I could ever get enough to meet my needs because I think in my situation being that I'm the only family member here, I don't have any outside support. I don't think I could ever achieve the amount that I really need to make it functionable. That's what I've discovered. Flexibility in respite care scheduling (for periods ranging from several days to several weeks) has been adopted by many respite care services in Canada and elsewhere in order to meet the varied needs in the community (DeLargy & Belf, 1957; MacCourt & Southam, 1983). Unfortunately, the caregivers in this study were not offered flexible scheduling and, thus, most of the caregivers were unhappy with the time allotment for the respite care service. In addition to the two to six week time allotments which they did receive, caregivers saw a need to provide the service for very short-stay periods in the form of weekend, mid-week, and one week relief periods. One caregiver commented: Like a weekend or two night thing for somebody who has an awful lot to do. I think that would do just as well. That might be even better than a holiday. See you can't even go away for one night. You always have to come back. Similarly, another caregiver commented:  115  I would like to see you be able to use it for shorter periods of time. If you could use it say for a week, it would be nice and then be able to... even if I wasn't going away to be able to sort of have that break where you have the house to yourself for a week. It would be nice to use it that way too at least three or four times a year. Another caregiver expressed much concern over the 24-hour homemaker service that was offered to her for short-term respite instead of institutionalized respite care. The continued feeling of responsibility for the care-receiver while the homemaker provided respite in the home was very stressful for her. She commented: She (the community nurse) said, "We would suggest that you have a homemaker come in (instead of using respite care)". It was for four days. I hope it (respite care) wasn't something they were trying to do away with or maybe feel that it is better to put a homemaker in for two weeks because when I had the homemaker for four days I thought, "What if the fuse goes or something goes wrong with the water"... I thought it is a big responsibility having someone in the house here. I was worried about things end getting enough food end things you know getting the house cleaned up before I left. All that is tiring before I left but I thought of that afterwards and for a weekend it was fine but I don't think it would be fine for any length of time. You think of all kinds of things that could go wrong so I think you feel much more secure and are not worried so much if they are at (facility). Although caregivers feel that present community services do not meet their needs, they feel that part of the problem is that they have not been equipped with pertinent information about caregiving and available services. Five of the caregivers repeatedly  116  asked the interviewer if their experiences were similar to other caregivers interviewed. Two looked to the interviewer as a source of information regarding community resources. Three caregivers have pursued caregiver support groups in an attempt to obtain such information. One caregiver reported; There seem to be so many of us that don't really have the information on what's available to us or how to deal with looking after your parents or your husband or your wife or whatever family member in your home. How to deal with problems and that type of thing. So we have started a support group for caregivers at the day-care. Archbold (1982a) has also found that caregivers are not familiar with the services available in the community. They require knowledge in the areas of: the impact of illness on the parent's functional abilities; services available; as well as developing skills in negotiation with individuals end agencies. Initially, the caregivers consult with family, friends, and professionals while assessing the community and establishing a care system. Options are evaluated for congruence with the parent's need, reliability, convenience and expense. Unfortunately, inadequate or inaccurate information from professionals complicate the process. In this study, and in Cantor's study (1983), caregivers experienced inadequate or inaccurate information not only initially, as Archbold's subjects experienced, but on an ongoing basis which contributed to these caregivers not being able to meet their needs. Most of the caregivers have accepted permanent institutionalization as an immediate or future option since they do not see family or community services being able  117  to meet their needs. All of the caregivers have indicated that without intense family and/or community service assistance, they have gotten to or are getting to the point where the deteriorating physical and emotional health of the care-receiver is more than they alone can handle and thus they are forced to seek permanent institutionalization. These findings are supportive of Smallegan's (1983) and Brody's (1985) research. Brody has found that institutionalization of the aged does not reflect "dumping" or abandonment of the aged. Brody states institutionalization results from: the chronic disabilities and dependencies of very old people combined with the absence, loss, or incapacities of caregiving families, and a glaring lack of supportive community services. After prolonged and strenuous efforts to cere for their parents, adult children reached their limits of endurance (p. 20). The caregivers in this study have voiced concern that generally the health care professionals have not been supportive of their permanent institutionalization decisions. This ties contributed to anxiety and guilt feelings for the caregivers as they struggled with their decisions. One caregiver expressed her feelings towerds societal pressures to keep the care-receiver in the home: I just don't like the way the government is handling it right now. I really don't because what they are trying to do is to encourage the elderly people to stay with their children end maybe it would work better if the person at home isn't working but when you are working that is two full-time jobs that you've got. It's got to give somewhere along the line. I think that you have to be super human to be able to cope with that and then you still have all the guilt feelings because you can't cope.  118  There Is still all that going on inside of you. I should be able to do this because that is just built in. It's in society. You should look after your parents and if you can't, if they have to go into a home there is something wrong. Similarly, another caregiver expressed anger towards health care professionals: The Long-Term Care assessor (community nurse) said that they are really putting pressure on now to keep people In the home. They don't want to be putting people in places such as extended care. I thought that was very easy for them to say because they are not the one in the situation or giving the care. I guess I really resented it because I feel that I am giving alot and when I had her (community nurse) in here that day and she didn't back up my decision for a permanent stay... I told her IW8S having a difficult time end I just felt I couldn't handle the situation any longer. I had to talk myself blue to get my mother even on the list which is a year's waiting list. Archbold (1980) has also observed that agencies are more apt to provide services such as meals-on-wheels for persons who ere living alone then for persons living with a spouse or child. Such was the case of one employed caregiver in this study who was refused meals-on-wheels on the grounds that her mother didn't require the service at lunch-time since the caregiver was able to prepare a meal for her in the evening. Archbold (1980) states that the assumption is that the "relatives can do it" (p. 81). Four caregivers anticipate positive outcomes from permanent institutionalization in the form of improved relationships with the elderly relatives. Ore caregiver commented.  119  Just because you put them in a home doesn't mean that is the end of all social contact with the family and the end of everything. It would be better time spent together. It relieves the pressure off you that you can do more when they are in there. For one caregiver who has already placed her mother permanently, an improved relationship has occurred. It has helped my nerves and everything... a feeling of relief because I know she is in better hands even than she would be with me. I have more patience and on her bad days when she's cursing and swearing I can now cope with it. So it is much easier for me to deal with when I visit and don't have this constantly like I did at home. Here she was just driving me nuts. I thought I would go out of my mind day in and day out. So I can handle her much better but if she ever came back here that would be too much to handle. She's deteriorated too much. Smith and Bengtson (1979) have also found that many caregivers experience a renewed closeness with the care-receiver after permanent institutionalization. They attribute this to a history of affection, respect and feelings of closeness between parent and child which was strained or interrupted by the traumas of caregiving. Thus, they also support the finding that caregivers do not dump or abandon their elderly relatives in an institution. Whether the caregivers made a decision to use permanent institutionalization in the near or far future, they all found the respite care service to be a necessary interim measure which provided relief from the strains of caregiving. They all indicated that they  120  would like to continue this service as offered but would also prefer the service to be extended to weekend, week-day and one week relief periods in order to help meet their needs as caregivers. It must be noted that the respite care service was the only service which all of the caregivers considered to be helpful while waiting for permanent placement. An increase in other services were not seen as particularly beneficial by two caregivers. Comments which Indicated this were 8s follows: "The other services just wouldn't have met my needs" and "When they reassessed her they said she would be really allowed twice a week (for day-care) but it seems that it won't be too long until she will be in there permanently. I just didn't want too much disruption so we just left it at once a week". The consequences of respite care use have been identified in this section. These consequences can be summarized as follows: 1) caregivers plan for multiple respite care use, 2) caregivers experience altered ceregiver/care-receiver relationships which generally are positive in nature, 3) caregivers increase their use of services, and 4) caregivers m8ke plans for the future. Deteriorating Health of Care-Receiver A major theme that was persistent throughout all of the caregivers' discussions was the deteriorating health of the care-receivers as evidenced in the preceding sections. All of the caregivers indicated that the deteriorating mental and physical health of their eldBrly  relative was of major concern to them. This W8S of continual concern for the  caregivers since the deterioration of the care-receiver could not be predicted (in terms of degree, type or timing) by the caregivers or by the health care professionals involved. In  121  addition, the outcomes of the deteriorating mental and physical health of the care-receiver also could not be predicted. This lack of predictability was evident in the caregivers' accounts of the factors which led to respite care use, the respite cere experience and the consequences of respite care use. Care-receiver memory loss, deafness, poor eyesight and unsteady gait were the major types of care-receiver deterioration that were of particular concern for the caregivers. The consequences of these types of deterioration were the care-receivers' decreasing ability to perform Activities of Daily Living (A.D.L.) and the care-receivers' lack of safety awareness. These consequences required the caregivers to continually adjust their caregiving assistance to the care-receivers. The severity of this impact on the caregivers wi 11 now be described. Decreasing AbilitytoPerform Activities nf Daily I iving The caregivers were continually faced with a decline in the care-receivers' A.D.L. abilities which called for constant adjustment of the care offered by these caregivers. Rogerson (1984) supports this finding and has found, in a survey of 128 caregivers (4858 of which lived with the care-receiver), that although many elderly people have health problems which may be minor these problems can eventually lead to increased dependency on the caregivers and a reduction in their quality of life. In this study, three major areas of increased care-receiver dependency were found to require adjustments in the caregivers' lifestyles. The care-receivers required assistance with: 1) bathing, 2) choosing clothing to wear for the day, and 3) meal preparation. These aspects contributed to caregiver mental strain (by contributing to the factors: feelings of responsibility, lack  122  of freedom and negative impact on immediate family members), physical strain and the use of multiple services, which have been outlined in a previous section. The care-receiver requirements will now be discussed separately in terms of their negative impact on the caregivers. To begin, one area of concern for four of the seven caregivers was the care-receiver's inability to bathe unassisted. One caregiver stated: It was h8rd. It got to the point where I would bathe her and I would do all her personal hygiene. I'd look after cleaning up... She was incontinent so I also had alot of washing to do... Actually I gave her two to three baths a week because she likes a b8th you know. I think a person needs it three times a week regardless. Another caregiver progressively found bathing too difficult to manage and therefore arranged for the care-receiver to have a bath at the facility where the care-receiver attended day-care. Her comments were as follows: Now that she is going to (facility) I have arranged for her to have her bath there on Thursdays and that is really great because to get her upstairs and for me to get her into the bathtub just about killed my back. It's hard. She's tiny but it's still hard getting someone in and out of the bathtub. These caregiver concerns regarding bathing are in contrast to the findings of Sanford (1975) who found that bathing procedures were well tolerated by 93* of the caregivers in his stud/ even though over 50* of the 50 care-receivers were unable to bathe unassisted. However, the main reason cited for this high toleration was the frequent help from community services with this task. In the current stud/, only one caregiver  123  received bathing assistance from a community service. Although the care-receivers were able to dress themselves, three (out of six) care-receivers were no longer able to choose which clothes to wear for the day and thus required assistance with this task. This task was of minor concern to the caregivers. Brocklehurst et al. (1981) and Sanford (1975) have found similar results. In each of their studies, the authors reported that dressing procedures were well tolerated by 93* of the caregivers. One caregiver in the present study described her situation as follows: She has no sense of what clothes to wear so she is now at the stage where she likes me to put her things out... That is something that has evolved. You don't live with somebody over the years and not have these things evolve without even realizing what you sre doing. It just is. She dresses herself once her clothes are laid out. In several studies, care-receiver incontinence has been cited as a source of concern for many caregivers (Brocklehurst et al., 198!; Sanford, 1975). Specifically, fecal incontinence was viewed as more bothersome than urinary incontinence. In the present study, incontinence was not a concern for six caregivers even though four (of the six) care-receivers were periodically incontinent of urine. Only one caregiver found urinary incontinence to be of concern due to the increased washing that was a result of the care-receiver's incontinence. All of the caregivers expressed concern over the care-receiver's inability to prepare meals due to diminishing eyesight and/or memory loss, (tote caregiver stated You know with her eyesight not being too good and she was very frail and she got to the point... when she kept getting frailer and frailer... that I couldn't let her  124  use the stove and so I had to be there at all times to see that I could get meals for her and she wouldn't bother to get e meal for herself if I didn't. The necessity for caregiver assistance with meal preparation has also been documented by York and Calsyn (1977). In their study of 76 caregivers who had recently placed an elderly relative into a nursing home, 5858 of the caregivers claimed that providing help with cooking was a factor which contributed to the placement of their relative into an institution. Although this concern indicates an inability to perform an Activity of Daily Living, care-receiver inability to prepare meals unassisted was a major concern for caregivers in terms of the care-receivers' increasing lack of safety swsreness associated with this task. Lack of Safety Awareness  Care-receiver lack of safety awareness posed concern for the caregivers in the following ways: 1) caregivers were faced with an increasing responsibility for providing meals for the care-receiver, and 2) caregivers were progressively unable to leave the care-receiver for long periods of time. These consequences for the caregivers greatly influenced their decisions to use respite care since they contributed to caregiver mental strain and use of multiple support services. In particular, the consequences influenced caregiver mental strein by contributing to a lack of freedom for all of the caregivers, placing constraints on the employment situation of the four employed caregivers, having a negative impact on immediate family members, and contributing to communication difficulties between caregivers and care-receivers.  125  In regard to the caregivers' increased responsibility for providing meals for the care-receivers, one caregiver described her situation with her elderly parent's progressive inability to prepare meals as follows: Up until the last few months she was able to get her own meals. I could trust her with a singing kettle to make herself a cup of coffee or she would heat something up in the double-boiler. Then she got to the point where she put the double-boiler on end came end sat here and fell asleep and if it hadn't been for the smoke alarm the house might have burned down. Another time  IW8S out  and she was making toast  and I guess it was the way the toaster was on or either it got stuck and the toast burned. She phoned the fire deportment. Bells clanging ell for 8 piece of toast... Well then I decided no more. I just said don't use the stove anymore. No matter what you want I'll get it because it was too risky. Similarly, another caregiver described her situation in relation to her care-receiver's memory loss: Her memory is absolutely zilch for ten not even five minutes, not that long which means she can't boil a kettle... Well she can boil a kettle because it whistles but if she uses a stove or anything like that she can't provide for herself in any way... Unless I can find something out of a can that she can eat and then I wouldn't want her to heat it up on the stove because again probably she'd go away and forget about it unless it whistled her to come back like the kettle does. Corresponding to the caregivers' increased responsibility for providing meals for the care-receivers is the progression towards being unable to leave the care-receivers  126  unattended for long periods of time. This progression is described by the following caregiver: I could leave her alone in the house because I would only go out in the mornings between breakfast and I would be back for lunch but that's really the only time that I would leave her... Before I would leave her a lunch with strict orders not to touch the stove. At that point she did mind what I told her. Now I wouldn't leave her for a minute. You would never know what she is likely to do. According to Roger son (1984), meal-times can be particularly troublesome for caregivers who are employed. In her study, 31 out of 55 employed caregivers experienced disruption to their work due to having to forego lunch-times to go home to provide food, or to go home to ensure care-receiver safety. The four employed caregivers in this study expressed similar comments regarding their own situations. One caregiver stated: Now I've got tt that Mom goes to (day-care) two days a week and I havea home-maker in one day so that gives me three days now that I don't have to come home for lunch. So that makes a big difference... you know you don't have to get out at 12 and get home for lunch. You know what it's like when you are working it makes it difficult to be able to do that... Another caregiver also stated that meals were an inconvenience on her days-off from work. She commented: So on Saturdays you have to be here for breakfast and lunch and if you go out even for a walk or something that's about it. You have to be back for dinner or maybe  127  All of the caregivers expressed concern over their elderly relative's progressive unsteadiness in gait and diminishing eyesight which they attributed to the care-receiver's increase in falls. In a study by Sanford (1975), falls were also found to be of concern to caregivers. However, Sanford found that with 58* of the 50 caregivers interviewed, worry about the possibility of injury to the care-receiver was over-shadowed in most caregiver's minds by the difficulty of picking up the fallen care-receiver which often required the help of 8 neighbour or the police. This aspect of falls was not identified by the caregivers in the present study. Increases in frequency and severity of falls were cited by four caregivers as major reasons for not leaving the care-receivers unattended for long periods of time. One caregiver described her situation: Unless she looks down very carefully she doesn't know e step is there. The only reason she uses the stairs is she knows her way. There's been a really big difference in two years.. .She has fallen alot in the last two years. She fell down the stairs and broke her arm and her glasses and you sort of find her there... Her hearing aide fell out end she couldn't see or hear. Each time she falls it gets worse. We can't leave her in the house by herself anymore. It's not safe. Included in the above comment was the caregiver's concern over the care-receiver's deafness. Three other caregivers contribute the care-receivers' deafness 8S e factor which also influences their decision to leave the care-receivers for only short periods of time. Comments such as, "She couldn't hear if there was any danger", or "She's pretty deaf with a hearing aide... so we wouldn't consider leaving her here... on her own"  128  were expressed by the caregivers. As evidenced in the above discussion, the deteriorating mental and physical health of the care-receivers had 8 great impact on the care which was provided by the caregivers. It contributed to the factors which led caregivers to use respite care (ie. mental strain, physical strain, and the influences of support services), and influenced the consequences of respite care use (in particular, the caregivers' plans for multiple respite cere use and plans for the future). The previous four sections have identified the factors which have led caregivers to use respite care, described the caregivers' respite care experiences, identified the consequences of respite care use for the caregivers, end described the impact of the deteriorating mentel end physical health of care-receivers on the caregivers. The discussion will turn now to the final section which identifies the needs of family caregivers that can be met through the use of respite care. Caregiver Needs The needs of family caregivers which can be met through the use of respite cere are identified through an analysis of the content presented in the previous sections. This analysis is guided by a needs framework which has been derived from the U.B.C. Model for Nursing (1980). Three time periods, the period prior to respite cere use, the respite care experience itself, and the period efter respite care use, ere discussed separately in terms of whether needs 8re met or unmet within each of these time periods. The conclusions of needs being met or unmet are based on the caregivers' perceptions of their own needs.  129  Period Prior to Respite Care Use In the period prior to the use of respite care, three needs were consistently met by the caregivers. They were the need for intake of oxygen, the need for intake of food and fluid; nourishment, end the need for collection end removal of accumulated wastes. The three major factor categories (mental strain, physical strain and the influences of support systems), which could potentially Impact these needs in a negative manner, did not interfere with the three needs just identified. On the other hand, the three factor categories were found to have e negative impact on the remaining six caregiver needs. To begin, the need for stimulation of the senses (ie. hearing, vision, smell, touch 8nd taste) was not met. This was due to a lack of or limited caregiver sensory stimulation caused by the caregiving experience. In particular, the lack of personal time end the limited social activities imposed by the cere-receivers' deteriorating mentel and physical health contributed to this unmet need. Caregivers were generally able to leave the care-receiver unattended for very limited time periods only which diminished or depleted their time spent in social or recreational activities with other family members. Specifically, caregivers missed the sensory stimulation provided by family vacations snd weekend times as a family. Physical strain (in the form of caregiver altered sleep patterns and deteriorating health) also decreased the opportunity for caregivers to pursue sensory stimulation activities. The second need, which was not met, wes the need for respect of self by self and others. Caregiver mental strain and the influences of the family support system greatly affected this need in e negative manner. In particular, conflict between family end  130  care-receiver responsibilities continually plagued the caregivers. Due to time and energy restrictions the caregivers were torn between these responsibilities since they could not consistently attend to both types of responsibilities at the same time. This inability to attend to both family and care-receiver responsibilities decreased the caregivers' self-esteem and the family's view of the caregivers. A lack of physical and emotional support by siblings and a lack of physical support by Immediate family members also decreased the caregivers' respect of self since the caregivers generally felt that caregiving was dumped on them by others and they were not offered help with this undertaking. The need for love, belongingness and dependence was the third need which was not met. Caregiver ment8l strain and the influences of the family support system generally impacted this need in the following manner: 1) caregivers experienced increased feelings of responsibility for the care-receiver as a result of the general lack of physical aid emotional support from siblings and a lack of physical support from immediate family members (these factors had a negative impact on the caregivers' need for dependence); 2) caregiver feelings of responsibility were increased as a result of the conflict between family and care-receiver responsibilities and the role reversal of parent and child between the care-receiver and caregiver (these factors decreased the caregiver's feelings of belongingness and dependence); and 3) caregivers were constantly faced with the negative impact that caregiving had on immediate family members due to the limited family time and vacation/weekend time away from the care-receiver (these factors decreased the caregiver's feelings of love, belongingness, and dependence with other family  131  members). The need for mastery was the fourth need which was not met. Caregiver mental strain and the limited support from community services both impacted this need in 8 negative manner. Specifically, the lack of freedom imposed by the caregiving situation and the limited availability of community and respite care service options hindered the caregivers in their pursuit of activities away from the caregiving situation. Thus, the limitations placed on personal time and social activities by these factors led the caregivers to experience decreased feelings of accomplishment. The caregivers' feelings of accomplishment in the caregiving situation were decreased by the communication difficulties that they experienced between themselves and their care-receivers. Conflict between family snd care-receiver responsibilities also influenced the need for mastery in a negative manner since the caregivers were torn between the two major responsibilities and were unable to meet both of these responsibilities simultaneously. In addition, the negative impact of caregiving on immediate family members in the form of limited family time, lack of family vacations, and lack of family privacy contributed to the caregivers' inability to meet the need for mastery since this was another indication to the caregivers that they were not able to accomplish a balance between family and caregiver responsibilities. The need for balance between production and utilization of energy was the fifth need which was not met. Caregiver mental strain, physical strain and the limited support from community services influenced this need in a negative manner. The mental strain factors which negatively impacted the caregivers' balance between production and  132  utilization of energy were as follows: 1) caregiver feelings of constant responsibility (which were a result of a lack of emotional and physical support by siblings, a lack of physical support offered by immediate family members, and the conflict between family and caregiver responsibilities); 2) caregiver limited personal time and social activities; and 3) a lack of family time, vacations, and privacy (which were deemed necessary for revitalizing the caregivers). Physical strain In the form of altered sleep patterns and deteriorating health also indicated a lack of balance between production and utilization of energy. Since the caregivers experienced both mental and physical strain, they turned to community services in an attempt to decrease the strain experienced. Unfortunately, the limited service information and availability did not provide the required caregiver relief and so the caregivers generally did not meet their need for balance between production end utilization of energy. The sixth and final need that was not met by caregivers was the need for safety and security. Caregiver mental strain, physical strain and the Influences of support systems all affected this need in a negative manner. In particular, the lack of sibling support, the lack of physical support from immediate family members, the caregivers' altered sleep patterns and deteriorating health, and the limited community and respite care service options In combination greatly threatened the caregivers' integrity which indicated that the caregivers' need for safety and security was not met. To summarize, the caregivers experienced six unmet needs out of a total of nine needs before utilizing the respite care service (ie. the only needs that were met were the need for intake of oxygen, the need for intake of food end fluid; nourishment, and the need  133  for collection and removal of accumulated wastes). The discussion will now turn to the identification of the caregiver needs that were met during the respite care experience.  Respite Care Experience An analysis of needs for the respite care period indicates that all of the caregiver needs were met: 1) the need for intake of oxygen, 2) the need for intake of food and fluid; nourishment, 3) the need for collection and removal of accumulated wastes, 4) the need for stimulation of the senses (ie. hearing, vision, smell, touch end taste), 5) the need for respect of self by self and others, 6) the need for love, belongingness and dependence, 7) the need for mastery, 8) the need for balance between production and utilization of energy, 8nd 9) the need for safety 8nd security. Briefly during the initial days of the respite care experience, the caregivers experienced one unmet need, the need for love, belongingness end dependence, since they had guilt feelings over placing their relatives into the respite care facility. However, these guilt feelings subsided quickly and the nine caregiver needs were then met. The use of the service for vacation relief and a rest at home Bnd the caregiver feelings of lack of responsibility for the care-receiver during the time of respite care all contributed positively towards the meeting of caregiver needs. Unfortunately, the nine needs did not continue to be met after the caregivers resumed their caregiving activities following the respite care experience. This is evidenced in the following discussion. Period Following Respite Care Use In the period following respite care, which is indicated by the consequences of respite care use, only three needs were found to be met. These needs were: 1) the need for  134  intake of oxygen, 2) the need for intake of food and fluid; nourishment, and 3) the need for collection and removal of accumulated wastes. Since these needs were not affected by the consequences of respite care use (ie. the plans for multiple respite care use, altered caregiver /care- receiver relationships, increased use of services and plans for the future) or the original factors which led to respite care use, the three needs were able to be met. On the other hand, six needs again became unmet after the use of respite care. These six needs were: 1) the need for stimulation of the senses, 2) the need for respect of self by self and others, 3) the need for love, belongingness and dependence, 4) the need for mastery, 5) the need for production and utilization of energy, and 6) the need for safety and security. The need for stimulation of the senses was influenced negatively by three consequences of respite care use. Since the caregivers generally were concerned with their potential abuse of the respite care service (due to misinformation regarding the yearly time allotment for the service), the long waiting lists for respite care (which decreased their chances of total relief from caregiving) and the prospect of prolonged caregiving if permanent placement was not sought (which again placed them in a situation where all of the factors prior to respite care use were negatively impacting the caregivers), the pursuit of activities which promoted sensory satisfaction was again thwarted after respite care use. The need for respect of self by self and others was also not met. Two caregivers found that their care-receivers did not eppreciste the cere provided by the caregivers  135  which greatly influenced their self-esteem in a negative manner. The caregivers' respect of self was also damaged when the caregivers realized that they were no longer able to cope with their caregiving situations and thus required the permanent institutionalization of their care-receivers. The lack of support from health care professionals for the caregivers' permanent institutionalization decisions decreased the self-esteem of caregivers even further since they felt that this was an Indication that they were not respected by health care professionals for the caregiving that they had provided in the past The need for love, belongingness and dependence was the third need that was not met after respite care use. Again, the care-receivers' lack of appreciation of care provided by the caregivers impacted on the caregivers' feelings of love and belongingness in a negative manner. The caregivers became acutely aware that the community services over a period of time would not be able to meet their needs. Thus, the caregivers realized that the factors which influenced them negatively prior to respite care use would continue to have a negative influence on their relationships with family and others after the use of respite care. For those caregivers who pursued the use of permanent institutionalization for the care-receiver in order to partly decrease this influence in their lives, the waiting period before this service could be obtained continued to interfere with the meeting of their need for love, belongingness and dependence. The need for mastery was also not met. This W8S due in part (in two cases) to the care-receivers' lack of appreciation of the care provided by the caregivers and due mostly to the inability of community services to meet the caregivers' needs. Since the caregivers  136  prior to respite care use were influenced negatively by mental strain and physical strain in particular, they looked towards community services as helping to reduce these strains. Unfortunately, the availability of services did not meet the needs of the caregivers and thus they were not able to accomplish the types and amount of activities that they would like to pursue. The need for production and utilization of energy was the fifth need that was not met. This need was influenced negatively in the following manner: 1) caregivers were concerned over the long waiting lists for respite care end thus were not able to utilize this service frequently to decrease the strains of caregiving, 2) three caregivers returned to the same caregiver/care-receiver relationship and routine (which indicated a return to the negative influence exerted by the three major factor categories identified prior to respite care use), and 3) community service availability was not suitable for meeting caregiver needs (thus, caregivers continued to experience mental and physical strain). The need for safety and security was the sixth and final need that was not met. This need was greatly influenced in a negative manner by the consequence which indicated that the caregiver had returned to the same situation prior to the use of respite care. The limited availability of community services again contributed to caregiver mental strain and physical strain which led to an unmet need for safety and security. Since the data show that the caregiver generally returns to the same situation that is experienced prior to the respite care experience (see Factors Leading to Respite Care Use) or experiences consequences which provide negative occurrences for the caregiver, it is evident that the one-time use of respite care alone does not prolong the meeting of  137  caregiver needs over an extended period of time. The meeting of all of the caregiver needs occurs only during the time of the respite care experience. Summary In this chapter, the findings of the stud/ were presented and discussed. It was apparent from the selective characteristics of the caregivers that the majority of caregivers were married daughters of the elderly female care-receiver and were of English origin. The deteriorating mental and physical health of the care-receivers had a great impact on the caregivers. Since the two consequences of deteriorating care-receiver health were care-receiver decreasing ability to perform Activities of Daily Living and care-receiver lack of safety awareness, the caregivers were forced to alter their caregiving activities to accommodate these changes as they arose. The consequences greatly influenced the three major categories of factors which led to the use of respite care. These major factor categories were identified as: mental strain, physical strain and the influences of support systems. The major factor categories and the factors which comprised these major factor categories contributed to the six unmet needs experienced by caregivers prior to respite care use. The respite care experience was used for caregiver vacation relief 8nd rest periods. All of the caregivers were generally satisfied with the experience although some had guilt feelings during the initial few days of the experience. A lack of responsibility towards the care-receiver was felt by all of the caregivers during the period of respite care use. Thus, it W8S evident that respite care met all of the needs of caregivers during  138  the time of use. Plans for multiple respite cere use, altered ceregiver/care-receiver relationships, increased use of services end caregiver plans for the future were identified as the four major consequences of respite care use. As a result of these consequences, the caregivers experienced six unmet needs. Although ell of the caregiver needs were met during the respite cere experience, all of the nine needs of caregivers were not met once the caregiving experience W8s resumed. Therefore, it can be concluded that the respite care service meets the caregivers' needs during the time of use only but it does not promote or prolong the meeting of caregiver needs once caregiving is resumed. In the following chapter, a summery end the conclusions of this study will be presented. The study's implications for nursing practice, education snd research will also be included  139  CHAPTER 6 SUMMARY, CONCLUSIONS AND IMPLICATIONS FOR NURSING This chapter presents a summary of the study, the major conclusions and the implications of this study for nursing practice, education, and research. The study was designed to gain an understanding of the relationship between family caregiver needs and the use of the respite care service. Although respite care has been offered to families who care for elderly relatives in the community, there has been a dearth of research which supports or refutes the assumption that this service actually meets the needs of the caregivers. Therefore, this study aimed to identify the needs of family caregivers which could be met through the use of respite care. The knowledge gained through this research was recognized as providing a valid basis for decision-making in the areas of nursing practice, education, and research. A qualitative grounded theory approach was used (Glaser & Strauss, 1967). This methodology enabled the researcher to generate theoretical constructs that explained the family caregiver experiences with respite care which in turn were used to identify the needs of family caregivers that could be met through the use of this service. The data collection method used semi-structured interviews to elicit information from the family caregivers. Caregiver and care- receiver demographic data were collected using a data collection tool (see Appendix C). A needs framework, which has been derived from the nine major needs of the U.B.C. Model for Nursing (1980), provided structure for the formulation of interview questions used in the data collection tool and also provided direction for data analysis.  HO  The sample consisted of seven caregivers, five daughters, one daughter-in-law and one son, whose elderly female relatives used intermediate respite care services at least once in the past. All of the seven caregivers were interviewed at least once. Six caregivers were interviewed twice to explore in greater depth the ideas that they expressed during the first interview and to obtain clarification and/or elaboration of the substantive theory which was emerging from the data collected. During each Interview, the caregivers identified the factors which led them to use respite care, described the respite care experience, and identified the consequences of respite care use. The interviews were conducted over a six-month period. Data were analyzed simultaneously with and following data collection using the process of continuous comparative analysis described by Maxwell and Maxwell (1981). The categories that emerged from the date collected were examined in terms of whether they were factors leading to the use of respite care, concepts pertaining to the respite care experience or concepts which Identified the consequences of respite care use. Family caregiver needs which were met through the use of respite care were identified through an analysis of the developed concepts. In order to identify the needs which were met by respite care, three time periods, the period prior to respite care use, the respite care experience itself, and the period after respite care use, were analyzed In terms of caregiver met or unmet needs. Demographic data, pertaining to the caregivers and care-receivers, were analyzed for the purpose of identifying the selective characteristics of family caregivers who use respite care. The findings revealed that the majority of caregivers were of English origin and  141  were married daughters of the elderly female relative. Five of the seven caregivers had provided care for 10 or more years to an elderly relative who experienced multiple health concerns. Care-receiver deteriorating mental end physical health appeared as a major theme throughout the caregivers' discussions. The most prominent type of care-receiver deterioration was sensory loss in the form of poor eyesight and/or deafness. In order to accommodate the deterioration of care-receiver mental and physical health, caregivers had to continually adjust their caregiving assistance to the care-receivers. Three major factors which led family caregivers to use respite care were: 1) mental strain, 2) physical strain, and 3) the influences of support systems. The subcategories of these factors are found in Appendix E. Caregivers used the respite care service for vacation relief end rest periods. During the period of respite cere use, a lack of responsibility towards the care-receiver was felt by all of the caregivers. Four major consequences of respite care use were identified by the caregivers. They were. 1) plans for multiple respite care use, 2) altered caregiver/care-receiver relationships, 3) increased use of services, and 4) caregiver plans for the future. (See Appendix E for a summary of the research findings.) Only three out of nine needs were met by the caregivers during the period prior to respite care use. However, within the respite care period, all of the nine needs of caregivers were found to be met. After respite care use, only three met needs were again experienced by the caregivers. (See Appendix F for a summary of caregiver needs.)  142  Conclusions The following conclusions can be drawn from the findings of the study. 1) Caregiver experiences with respite care services must be examined in the context of the entire caregiving experience rather than as discrete, independent events. 2) Caregivers are aware of the constant adjustments that must be made to the care of the care-receiver in order to accommodate care-receiver deteriorating mental and physical health. Caregivers 8re also aware that they require assistance with these adjustments but they do not receive adequate support from health care professionals or community services. 3) Caregivers sre ignorant of the type and amount of community services that are available. They require information from the media and knowledgeable health care professionals to increase their awareness of community services. 4) Caregivers are satisfied with the respite care service. However, support is required from health care professionals in the community and from nursing personnel in the respite care situation in order to alleviate initial caregiver feelings of 8nxiety and guilt regarding respite care placement. 5) Caregiver satisfaction with the respite care service leads to plans for future respite care use. 6) Caregivers view respite care as a necessary measure which provides relief from the strains of caregiving. 7) Caregivers desire an increase in the availability of and flexibility in the scheduling of respite care In order to utilize this service for both vacation relief and rest  143  periods. 8) Respite care use leads to caregiver plans for immediate or future permanent institutionalization of care-receivers snd to an increased use of community services. 9) Caregivers agonize over their decisions to permanently institutionalize their elderly relatives and require support from health care professionals while making their decisions. 10) Respite care meets the needs of family caregivers during the time of use. However, all of the needs of caregivers do not continue to be met once caregiving experiences are resumed. The meeting of all needs is restricted to the time of respite care use. Implications for Nursing Practice Nurses in many instances have the responsibility for the coordination of the numerous health and social service options available to the caregivers of the elderly. They are the persons who must be knowledgeable of the type end amount of services available to family caregivers. Nurses must also be knowledgeable 8bout the psychological, social and physical needs of family caregivers snd the factors which generally influence the meeting of these needs. This knowledge of general factors which influence the meeting of caregiver needs and the services available to help meet caregiver needs provides direction for nurses when they assess family caregivers. Direction for the planning, implementation and evaluation of nursing care plans for family caregivers is also provided by this knowledge. A thorough nursing assessment of family caregivers should include an assessment  144  of factors which may indicate mental and physical strain for the individual caregiver and the strategies that this person uses to cope with the caregiving situation. In addition, the caregivers' understanding of the care-receivers' mental and physical health status is important to note during the assessment Planning for family caregivers should include measures to promote the caregivers' ability to cope with the caregiving situation. Initial plans should generally include the provision of information regarding 1) other caregivers' experiences with caregiving, 2) support groups available, and 3) community services available since these areas have been identified by caregivers in this study as areas in which they all initially lacked information. It Is important that caregivers receive this information in a total package and not receive bits and pieces of the information on different occasions. The caregivers in this study indicated that since they did not receive a total package of information when initially consulting with health care professionals, they were not able to effectively plan for the future. For example, several caregivers stated they would have used respite care earlier if they had been informed about the service during their initial inquiries about other services. Although information should be provided to caregivers in a total package as mentioned above, pl8ns for the family caregivers require individual tailoring 8nd must be based on the assessment of the individuals' needs. Providing information based only on a health care professionals' perspective may result in ineffective nursing care. For example, the findings of this study indicate that the health care professionals were not supportive of respite care for one-week periods or supportive of permanent  145  institutionalization. The lack of health care professionals' support with these service options served to increase the mental strain experienced by the caregivers. Thus, health care professionals must tailor support and service options to suit the ways in which individual caregivers meet their needs. With effective plenning, caregivers will be better prepared to deal with the impact of caregiving on their lives. Nursing Interventions should consist of creating a climate where caregivers are comfortable asking questions and voicing their fears or concerns regarding caregiving and the use of services. They should be aware of respite care and be encouraged to use this service. Caregivers require information about what to expect regarding respite care use. For example, what kinds of services that the respite care facility offers and what the general caregiver reactions are prior to, during and after respite care use. They require reassurance that although they may initially feel guilty about wanting a break from caregiving this is a normal reaction of many caregivers. Caregivers must be informed that respite care may have long waiting lists and therefore plans need to be made early in order that the individual's vacation and rest periods can be tailored to meet his/her needs as much as possible. The findings of this study indicate that caregivers desire the use of rest periods in conjunction with vacation relief during their respite care use. Thus, when providing Information about the respite care service to caregivers, nurses should encourage the use of rest periods (for example one week before and after vacation use) to help alleviate the strain of caregiving. During the initial visits to the respite care facility and the first few days of the experience (if the caregiver is present), it is recommended that an effort be made to  146  communicate to the caregivers, both verbally and nonverbally, that health professionals support the caregivers' decision to pursue respite care. This will help to alleviate the initial guilt and anxiety experienced by the caregivers during the first use of respite care Nurses and other health care professionals must listen to the caregivers' requests for services in order to help meet the caregivers' needs. Information regarding the amount and type of services requested by the caregivers must be presented to the local health councils, government task forces and multidisciplinary planning groups which make the plans for the total service packages offered to the elderly and their caregivers. For example, caregivers in this study have indicated that respite care is the only service which is considered helpful while waiting for permanent institutionalization and therefore they requested weekend, weekday end one-week respite care options in addition to the two-week to six-week options available. This information must be conveyed to the appropriate planners in order for changes to occur which will make the respite care service of more benefit to the caregivers. Thus, nurses, es patient advocates, have a responsibility to promote service options to planners that will meet the long-term needs of family caregivers. Implications for Nursing Education Nursing education has a responsibility to prepare nurses to provide nursing care to family caregivers and their elderly relatives. Knowledge pertaining to the effects of caregiving on the needs of family caregivers and community service options for the elderly and their families must be emphasized in the curriculum. As further information about the experiences of family caregivers and their elderly relatives becomes available  147  this information should be incorporated into the nursing curriculum and should also be made available to practicing nurses through continuing education opportunities. A study of gerontology which includes the mental and physical deteriorations in the health of the elderly also requires emphasis in nursing education. Skills in assessing, planning, intervening and evaluating with family caregivers should be part of all nursing programs regardless of whether the programs are community or hospital oriented. In addition, students and practitioners alike must be prepared to critique research and to apply pertinent research findings to nursing practice. Nursing students must understand that the caregiving experience may be perceived differently by health care professionals and family caregivers and that these discrepancies may impede nursing care if nurses are not sensitive to the differences and do not incorporate caregivers' values and beliefs into the nursing care plans for individual caregivers. Therefore, opportunity should be provided for the students to provide nursing care which includes the development of nursing care plans for elderly persons and their families in both the hospital and community settings. In addition, learning experiences should include participation in the existing community and respite care services with an emphasis being placed on the nurse's role in these services. Since family caregivers are known to use 8 variety of resources and are therefore involved with a number of health care professionals, nursing students must learn to work together with other health care professionals. On-going continuing education opportunities which address the content in this section should also be available to nurses who come in contact with family caregivers and  148  the elderly in their practice settings. Implications for Nursing Research This study has provided knowledge about the needs of family caregivers that can be met through the use of respite care which in turn has contributed to the overall understanding of the effect of caregiving on family caregivers. In view of the findings, several areas of further study are suggested. This study provided retrospective dat8 on the needs of family caregivers prior to and during the use of respite care. Subsequent studies conducted during the waiting period prior to respite care and during the respite care experience would add to the body of knowledge pertaining to caregiver needs. To further clarify the needs of family caregivers which can be met through the use of respite care a replication of this study might be conducted with modification of the sample. The present study focused on family caregivers who used intermediate care facilities for respite care. Family caregivers who require use of extended cere facilities which offer full assistance with care-receiver activities of daily living may have different respite care experiences than family caregivers who require use of intermediate care facilities which offer assistance with bathing, medications and meal preparation but offer minimal or no assistance with dressing, toileting and ambulation. Therefore, the needs that the extended care type of respite care service will meet may be different then those that are met by the intermediate care facilities in this study. In addition, the factors leading to and the consequences of respite care use for caregivers requiring extended care respite relief may also be different. Further investigations which compare groups using  149  the intermediate and extended care types of respite care would increase the scope or generality of the substantive theory presented In this study. Further research regarding the use of community services is also necessary. Questions still remain as to whether the following could help to meet the needs of family caregivers on a long-term basis: 1) the provision of information regarding community and respite care services early 1n the caregiving experience, 2) the use of community and/or respite care services early in the caregiving experience, 3) the frequent use of respite cere throughout the year, and 4) the frequent use of respite care for weekend, weekday and one-week durations. Inherent in the content of these questions is the necessity to review the present status of available resources and to research alternatives to the present system which could potentially help to meet caregiver needs. The findings of this study have only alluded to care-receiver responses to the caregiver/care-receiver experience and to the use of respite care through the accounts provided by the caregivers. Research which elicits the care-receivers' perspectives on the caregiving and respite care situations are necessary in order to get an accurate understanding of these experiences for the care-receiver. Research, pertaining to the areas mentioned in this section, will provide insight into the ways in which nursing may be able to help caregivers cope with long-term caregiving and will aid in the planning of effective nursing care. Through the application of knowledge obteined from such research and the findings of this study, nursing will be able to assist family caregivers with meeting their needs before, during and after respite care use.  150  REFERENCES Anderson, C. L. (1981). Abuse and neglect among the elderly. Journal of Gerontological Nursing, 2(2), 77-85. Archbold, P. G. (1980). Impact of parent caring on middle-aged offspring. Journal nf Gerontological Nursing. 6(2), 78-85. Archbold, P.O. (1982a, Winter). All-consuming activity: The family 8S caregiver. Generations, pp. 12-13,40. Archbold, P. G. (1982b). An analysis of parentcaring by women. Home Health Care  Services Quarter ly. 2(2), 5-26.  Beck, CM. (1983). Abuse of the elderly. Journal of Gerontological Nursing, 2(2), 96-101. Bram, H. B. (1974). Vacation and holiday guest program. The Gerontologist, 14( 1), 29-30. British Columbia Ministry of Health. (1980, January). Hospitals for Extended Care. 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Btgge(Ed), learning Theories for Teachers (2nd ed.) (pp. 179-197). New York: Harper & Row. MacCourt.P. & Southam.M. (1983, December). Respite care provides relief for caregivers. Dimensions, 18-19. Mantle, J. (1981). Nursing care of the aged in Canada. Journal of Gerontological Nursing, 2 ( 1 1 ) , 671-676. Marcus, L. & Jaeger, V. (1984). The elderly as family caregivers. Canadian Journal on Aging, 2(1), 33-43.  153  Maslow, A. H. (1968). Toward a psychology of being (2nd ed.). New York: Van Nostrand Reinhold. Maxwell, E. L, & Maxwell, R. J. (1981). Search and research in ethnology: Continuous comparativeenalysis. Behavior Science Research, 1£, 219-242. McKay, B. (1983). The effect on carers of hospital admission of the elderly. NijEsing Times, 12(48), 42-43. Murray, H. A. (1967). Explorations in personality. New York: Science Editions. Peplau, H. E. (1952). Interpersonal relations in nursing. New York: 6. P. Putnam's Sons. Poduska, B. (1980). Understanding nsynhnlngy and dimensions nf artjiKtment New York: McGraw-Hill. Robertson, D., Griffiths, R. A. & Cosln.LZ. (1977). A community-based continuing program for the elderly disabled. An evaluation of planned intermittent hospital readmission. Journal of Gerontology. 32(3), 334-339. Robinson, B. C. (1983). Validation of a caregiver strain index. Journal of Gerontology, 3fi(3), 344-348. Robinson, B. & Thurnher, M. (1979). Taking care of aged parents: A family cycle transition. The Gerontologist. 12(6), 586-593. Roger son, B. (1984, December 12). Ignore them at your peril. Nursing Times, 436-439. Sainsbury.P. & Grad, J. (1970). The psychiatrist and the geriatric patient. The effects of community care on the family of the geriatric patient. Journal of Geriatric Psychiatry, 4(1), 23-41. Salend, E., Kane, R. A., Satz.M. & Pynoos, J. (1984). Elder abuse reporting: Limitations of statutes. The Gerontologist, 24(0, 61-69. Sands, D., & Suzuki, T. (1983). 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TheQerontologist, 20(6), 649-655.  155  Appendix A Introductory Letter /Consent Form  I em e Registered Nurse and currently a Master's of Science in Nursing student at the University of British Columbia. I am working on my Master's thesis which deals with family caregivers and the use of respite care programs. If you agree to participate in this study, I would like to talk to the family caregivers living in your home. This talk would not involve your elderly relative or family members who do not provide the majority of care to your elderly relative since my study is only looking at family members (1 or 2 In number) who act as major caregivers. If you have children who are major caregivers, I would ask that they be 18 years or older in ordertoparticipate in our discussions. I would like to have at least two visits with your family. During these visits, I would like to talk with each caregiver individually. I would anticipate that our Individual talks will last about 1 hour with the entire visit being approximately 2 hours in length. I would like to tape-record our visits. However, these tapes will not be identified by name and will be destroyed at the end of my study- All of the information obtained in the study will be confidential. If you are interested in the findings of the study, I will gladly discuss these with you when the study is completed. If you decidetoparticipate, you are freetowithdraw at anytime. This will not affect any services which you might be receiving. You'll also be free to refusetoanswer  156  any questions during our interviews. If you have any questions at all, please feel free to call me at  If you  agree to participate, please sign the following.  Yours truly,  Ellen Courtney  Consent  Signatures of caregivers:  Relationship to elderly relative:  Date:  Telephone:  *lf you agree to participate, please call me at signed letter to  or return this  157  Appendix B Health Department A Cover Letter  Dear  Evaluation of Long Term Care Services - Respite Care  Evaluation of health services is important in determining to what extent community needs are being met and identifying if in fact there are voids in service delivery.  During this past year your  ,  , m8de use of a Long  Term Care facility respite bed in  Ellen Courtney, a U.B.C. Masters student from the School of Nursing, is seeking to evaluate the effect of facility respite placement of Long Term Care clients on those family members who are usually involved 8s primary care givers.  A letter of introduction and additional information regarding the study is enclosed.  Your willingness to participate in this study will benefit the local Long Term Care Program and hopefully provide a basis for possible improvement in respite care in the  future.  Yours truly,  Director, Continuing Care, Health Department A.  159  Appendix C Demographic Data Collection Tool  Caregiver Age:  Care-receiver Age: Sex:  Marital Status: Ethnicity: Employed or Unemployed: (If Employed, Full-time/Part-time?) Occupation: Level of Education: Relationship to Elderly Relative: Length of Caregiver Experience: Number of Respite Care Uses: Length of Stay For Respite Care: Type of Respitetare(Intermediate/Extended Care):  Medical Diagnosis:  160  Appendix D Sample Questions  Need  Examples of General Interview Questions (Probing questions will be used to elaborate upon the caregiver experiences.)  1) For mastery.  1)  How much has your life changed since you've become a caregiver? Explain.  2) What situations make you feel like you've accomplished something? Have you still been able to pursue these experiences since you've become a caregiver? Explain.  3) What situations frustrate you? When do they occur? 4) How would you describe your experience with respite care? Explain. 2)  For love, belonginess and dependence.  1)  What effect has caring for your relative had on your family?  161  2)  Have any of your relationships with your family and friends changed since you've become a caregiver? Explain.  3) 3)  For respect of self by  1)  Do you enjoy looking after your relative? What types of activities make you feel good about yourself? Have you been able  self and others.  to pursue these activities since you've become a caregiver? Explain. 2)  Describe any situations in your life which you are unhappy with.  4)  For stimulation of the senses (ie. hearing, vision, smell, touch and taste).  5)  For safety and security.  1) What types of activities do you do for relaxation? Explain. 2) Have your leisure activities changed since you've become a caregiver? Explain. 1) How would you generally rate your health before you became a caregiver? H8syour health changed in any way since you've become a caregiver? 2) What things do you do to try to stay healthy?  6)  For collection and removal of accumulated wastes.  162  7) For balance between  1) Have there been any changes in your  production and utilization  sleeping pattern since you've become  of energy.  a caregiver? Explain.  8)  For fnteke of oxygen.  9)  For intake of food and fluid; nourishment.  163  Appendix E  Summary of Research Findings  Factors Leading to  Respite Care  Consequences of  Respite Care Use  Experience  Respite Care Use  1) Mental Strain  1) Purposes for  -Feelings of Responsibility  Using Respite Care  -Lack of Freedom  -Vacation Relief  -Communication Difficulties  -Rest Periods  Between Caregivers and Care-receivers -Negative Impact of Caregiving on Immediate Family Members 2) Physical Strain -Altered Sleep Patterns -Caregiver Deteriorating Health 3) Influences of Support Systems -Immediate Family Support  2) Caregiver Satisfaction With Respite Care  1) Plans for Multiple Respite Care Use 2) Altered Caregiver/ Care-Receiver Relationships 3) Increased Use of Services  3) Lack of Responsibility 4) Caregiver Plans for the Future  164  Factors Leading to  Respite Care  Consequences of  Respite Care Use  Experience  Respite Care Use  3) Influences of Support Systems Continued -Support From Health Care Professionels -Support From Community Services  165  Appendix F Summary of CaregiverNeeds  Period Prior to  Respite Care  Period After  Respite Care Use  Experience  Respite Care Use  Met Needs  Met Needs  Met Needs  1) Intake of Oxygen  1) Intake of Oxygen  1) Intake of Oxygen  2) Intake of Food and Fluid;  2) Intake of Food and  2) Intake of Food and  Fluid; Nourishment  Fluid; Nourishment  Nourishment 3) Collection and Removal of Accumulated Wastes  3) Collection and Removal 3) Collection and of Accumulated Wastes 4) Stimulation of the Senses  Removal of Accumulate Wastes  5) Respect of Self by Self and Others 6) Need for Love, Belongingness and Dependence 7) Need for Mastery 8) Balance Between Production and Utilization of Energy 9) Safety and Security  

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