An Exploration of Family Care Giving for Older Relatives During Hospitalization. Susan M. Glose. Submitted in Partial Fulfillment of the

Transcription

1 An Exploration of Family Care Giving for Older Relatives During Hospitalization by Susan M. Glose Submitted in Partial Fulfillment of the Requirements for the Degree Doctor of Philosophy Supervised by Professor Bethel Powers Health Practice Research School of Nursing University of Rochester Rochester, New York 2013

2 ii Biographical Sketch Susan Glose was born in Buffalo, New York. She attended the State University of New York at Brockport and graduated with a Bachelor of Science degree in Psychology in She attended D Youville College and graduated with a Bachelor of Science degree in Nursing in She attended the State University of New York at Buffalo and graduated with a Master of Science degree in Nursing Administration in She completed the Advanced Certificate Adult Nurse Practitioner Program in She began doctoral studies in Health Practice Research at the University of Rochester School of Nursing in She pursued her research in family care giving of older adults during hospitalization under the direction of Bethel Powers. The following publication was a result of work conducted during doctoral study: Li, H., Powers, B. A., Melnyk, B. M., McCann, R., Koulouglioti, C., Anson, E., Smith, J. A., Xia, Y., Glose, S., & Tu, X. (2012). Randomized controlled trial of CARE: An intervention to improve outcomes of hospitalized elders and family caregivers. Research in Nursing & Health, 35,

3 iii Acknowledgements I have been blessed with people who have given me unwavering support during my doctoral education and dissertation. I would like to express my deep appreciation to my advisor and dissertation chair, Dr. Bethel Powers. Her expertise in both research and writing has greatly enhanced my education and dissertation. I am also grateful for my other committee members, Dr. Christina Koulouglioti, Dr. Mary Wilde, and Dr. Robert McCann, for their guidance and commitment with my dissertation. I am indebted to Dr. Hong Li, whose research on family care giving of older adults during hospitalization inspired me and provided a forum for me to begin my work. Special thanks to the CARE study team - Bethel Powers, Bernadette Melnyk, Robert McCann, Christina Koulouglioti, Elizabeth Anson, Joyce Smith, Ying Xia, and Xin Tu, who taught me so much and allowed me to participate in their work. I would like to thank my colleagues at the College at Brockport Department of Nursing for their support and words of encouragement throughout my studies. I will always have great respect and appreciation for Dr. Margie Lovett who first encouraged me to pursue my doctoral degree and was a valued mentor throughout my studies. I am grateful for my dear friend, Carol Root, who opened her home to me and provided endless encouragement and sincere friendship. I am most thankful for the support and encouragement of my mother who helped in so many ways, making it possible for me to study at the University of Rochester.

4 iv Abstract The primary dataset that was the source of data used in this descriptive study was from a large clinical trial of the CARE intervention to improve outcomes of hospitalized older adults and their family caregivers (Li et al., 2012). Family caregiver-patient dyads that were randomized into the intervention group (n=202) received a two-session empowerment-education program designed to help family caregivers select, from among a variety of identified care actions, those they believed they could perform and would most like to focus upon. Family caregivers used the Family Preferences Index (FPRI) to indicate care actions they wished to perform while the relative was in the hospital. Family members completed the Family Care Actions Index (FCAI) to indicate care actions they actually performed while the relative was in the hospital. The purpose of this secondary analysis was to examine those care actions that were reported as actually performed for the hospitalized older adults by family caregivers receiving the CARE intervention and those receiving the attention-control intervention. Patterns of care giving, within and across the context of the following three identified care action dimensions of Li et als. (2000) family care actions typology were explored: (a) providing care to the patient, (b) working together with the health care team, and (c) taking care of self. Also explored were relationships between caregivers reported care actions and expressed preferences, and characteristics, including relationship (spouse or non-spouse), and perceived closeness with the older relative, as measured by Stewart and Archbold s (1994) Mutuality Scale. Analysis of data that were collected during and after the older relatives hospital stays from 293 family caregivers indicated that (a) family caregivers

5 v provided similar proportions of care in two dimensions of the typology - providing care to the patient and working together with the health care team, (b) spouses provided similar amounts, but different types of care, compared to non-spouses, (c) family caregivers who provided more direct care actions for their relatives reported higher levels of closeness, (d) the majority of family caregivers wanted to participate in many care giving activities during the hospitalization, and (e) family caregivers who provided more care perceived a higher level of staff encouragement to participate in care. While it was assumed that many family caregivers continue their care giving role during the hospitalization of an older relative, these findings extend our understanding of the scope and variety of care actions performed. Additionally, attention to relationships between caregivers and their relatives will be helpful in determining the level of support and guidance family caregivers might need. Nurses are in a position to assess family caregiver preferences for participation, and to implement strategies that consciously include family caregivers in the care process. Tapping into family caregiver preferences and inclinations for participation in hospital care of their older relatives has the potential to improve the quality of patient care while improving satisfaction of both family caregivers and health care staff.

6 vi Contributors and Funding Sources This work was supervised by a dissertation committee consisting of Professor Bethel Powers (advisor) and Professor Christina Koulouglioti of the School of Nursing and Dr. Robert McCann of the School of Medicine and Dentistry. The data analyzed for Chapter 3 were provided by Professor Hong Li. All other work conducted for the dissertation was completed by the student independently.

7 vii Table of Contents Chapter 1. Introduction 1 Theoretical Perspective 2 Research Purpose and Aims 4 Significance of this Study 4 Older Adult Population 6 Family Caregivers 7 Current Knowledge of Family Care Giving During Hospitalization 8 Gaps in Knowledge of Family Care Giving During Hospitalization 9 The Importance of Supporting Family Caregivers 11 Chapter 2. Background and Orientation to the Problem 13 Review of Literature Search Strategy 13 Family Caregiver Role in Caring for an Older Relative in the Home Setting 14 Family Caregiver Role in Caring for an Older Relative in Long-term Care 24 Family Caregiver Role in Caring for an Older Relative during Hospitalization 34 Family Caregiver Role in Caring for an Older Relative in the ICU 40 Summary of Family Caregiver Role in Different Settings 45 Family Caregiver Role for an Older Relative During the Hospital Discharge Process 46

8 viii Family Care Giving of Hospitalized Older Relatives with Dementia 47 Nurse Perceptions of Family Care Giving During Hospitalization 48 Interventions for Family Caregivers of Hospitalized Older Relatives 49 Family Caregiver Preferences for Care of Hospitalized Older Relatives 53 Relationship Quality between Family Caregivers and Older Relatives 54 Description of the Primary Study 55 Assessment of Fit between Primary Data and this Study 57 Limitations of the Primary Data 58 Chapter 3. Methods 61 Purpose 61 Design 63 Sample 63 Procedure for Creating Sample and Human Subjects Information 64 Power Analysis 64 Measures 65 Data Analysis 69 Chapter 4. Results 77 Sample Characteristics 77 Research Questions 83 Summary of Results 103 Chapter 5. Discussion 106 Care Actions Performed (Aim #1) 107

9 ix Relationship between Care Actions and Family Caregiver (Aim #2) 110 Extent and Configuration of Patterns of Engagement (Aim #3) 113 Practice Implications 115 Education Implications 117 Policy Implications 118 Limitations 119 Implications for Future Research 120 Conclusion 122 References 124 Appendices Appendix A Review of Literature Search Strategy 141 Appendix B Intervention Studies for Family Caregivers of Hospitalized Older Relatives 144 Appendix C Family Care Actions Index (FCAI) 148 Appendix D Mutuality Scale (MS) 152 Appendix E Family Preferences Index (FPRI) 154 Appendix F Family Care Actions Performed from Most to Least Frequent 155 Appendix G Family Care Actions Performed from Most to Least Frequent, by Dimension 159 Appendix H Family Care Actions Performed by Spouses from Most to Least Frequent 163

10 x Appendix I Family Care Actions Performed by Non-spouses from Most to Least Frequent 167 Appendix J Family Preferences Index Items and Corresponding Family Care Action Index Items 171

11 xi List of Tables Table Title Page Table 1 Care activities provided by family caregivers for older relatives in the home setting 21 Table 2 Care activities provided by family caregivers for older relatives in residential long-term care 32 Table 3 Care activities provided by family caregivers for older relatives in the hospital setting 38 Table 4 Care activities provided by family caregivers for older relatives in the ICU 44 Table 5 Information on measures used 66 Table 6 Covariates considered with research question 5 72 Table 7 Covariates considered with research question 7 74 Table 8 Family caregiver demographics 78 Table 9 Hospitalized older relative demographics 79 Table 10 Characteristics of the older relatives hospitalization 80 Table 11 Covariates used in this study 81 Table 12 Pearson s product-moment coefficient of continuous level covariates 82 Table 13 Responses to "Other things you have done for your relative" 86 Table 14 Responses to "What else have you done to take care of your own needs?" 87

12 xii Table Title Page Table 15 FCAI items spouses were more likely to perform 91 Table 16 FCAI items non-spouses were more likely to perform 92 Table 17 Family care actions more likely to be performed by high mutuality family caregivers 95 Table 18 PFRI and the frequency of family caregivers indicating a preference for that activity 97 Table 19 Dimension score statistics 100 Table 20 Cluster statistics 101

13 1 An Exploration of Family Care Giving for Older Relatives During Hospitalization CHAPTER 1 Introduction Many older adults live independent and full, active lives with no assistance from others. However, about 25% of community dwelling older adults require assistance in one or more activities of daily living (ADLs). Many of these older adults require varying levels of assistance on a daily, weekly, or monthly basis. The level of assistance required increases with age and with number of chronic conditions (U. S. Department of Health and Human Services, 2011). The National Alliance for Caregiving (2009) reported that the average care recipient is female, 77 years of age, widowed, living in her own home, and needing care because of long-term physical conditions. The Family Caregiver Alliance (2011) reported that unpaid family caregivers will continue to be the largest providers of long-term care for older adults in the United States. Family caregivers not only provide necessary and compassionate care to millions of older adults, they also relieve the healthcare system of a costly and challenging burden. The cost of care provided by family caregivers continues to grow annually. Ward (1990) reported that the annual value of uncompensated care by family caregivers was $18 billion. By 2000, that number had grown to $257 billion (Arno, 2002). In a study sponsored by the American Association of Retired Persons (AARP), Feinberg, Reinhard, Houser, and Choula (2011) reported that the value of unpaid care for older adults had reached $450 billion. Were it not for family caregivers providing care, the care

14 2 requirements of older adults in the United States would easily overwhelm, and likely bankrupt, the healthcare system. Family caregivers provide care for older adults in a variety of settings, the most common being the home setting, either the older adults own homes or those of the family caregivers. Family caregivers often provide care for older adults when they are living in a long-term care setting, such as an assisted living facility or nursing home. Over the past several years, it has been recognized that family caregivers also provide care for older adults when they are hospitalized. The focus of this dissertation was this group of family caregivers. Theoretical Perspective There were two theoretical influences for this dissertation. The first was role theory. Family members often take on the role of caregiver for an older relative. According to role theory, people behave in certain, predictable, ways depending on the roles they choose and the situations they are in. Each role has associated expectations, obligations, rights, and privileges. Individuals and society have expectations for behavior within a given role and situation. Ideally, the expectations and behaviors are understood by all individuals who are involved in the particular situation (Biddle, 1986). When family members assume the role of caregiver for older relatives, they, and those around them, develop expectations about the types of behaviors that caregivers perform. Family caregivers engage in socially accepted, expected care giving behaviors. Examples of reasonable expectations might be expressing concern about the older adult, helping him/her when assistance is needed, helping him/her solve problems, and perhaps,

15 3 advocating for the older relative, among others. In this study, the role of the family caregiver was explored. Family caregivers may occupy other roles, such as spouse or child, which may influence their behavior in the care giving situation. The influence of some of these roles was also examined in this study. According to role theory, the situation in which a role is played out can influence the behaviors. Traditionally, research examining activities of family caregivers has focused on care taking place in the home setting. In this study, the role of the family caregiver was examined in a different situation, the hospital setting. The second theoretical influence for this study was a conceptualization of family care of hospitalized older adults proposed by Li, Stewart, Imle, Archbold, and Felver, (2000). The authors defined family care actions as things family caregivers say or do to help their older relatives during the hospitalization. They developed a typology that delineated three categories, or dimensions, of family care actions. The three dimensions were (1) providing care to the patient, (2) working together with the health care team, and (3) taking care of self. The authors likened the typology to the supporting legs of a three legged stool. They proposed that successful family care giving of hospitalized older adults requires a balance of care from all three dimensions, just as the three legged stool requires support from each leg to be balanced. In a later study, Li (2005) described family caregivers goals related to the hospitalization of an older relative as being able to maintain life styles and care routines that had been established prior to the hospitalization and maintaining their older relatives dignity and comfort. The conceptualization with its

16 4 typology, along with role theory, was utilized as a framework for development of the study purpose and aims. Research Purpose and Aims The purpose of this study was to expand the understanding of family care giving during the hospitalization of an older adult. The aims of this research were to: (1) describe care actions performed by family caregivers for their hospitalized older adult relatives by type and frequency, (2) explore relationships between care actions and family caregiver characteristics, and (3) evaluate the extent and configuration of caregiver engagement in various types of care actions. There also was an interest in observing the goodness of fit between observed patterns of care actions and the typology of family care actions, earlier conceptualized by Li et al., (2000), as ideally balanced across three dimensions: providing care to the patient, working together with the health care team, and taking care of self. The study was a secondary analysis of data from a controlled, randomized clinical trial that tested the efficacy of an intervention program for improving outcomes of hospitalized older adults and their family caregivers (Li et al., 2012). A complete description of the primary study will be presented in chapter 2. Significance of this Study One of the many reasons that the exploration of family care giving for older relatives during hospitalization is important, is the high rate of hospitalization for persons aged 65 and older. Since the early 1990 s healthcare utilization in the United States has been shifting from high cost hospitalization to lower cost community based care and prevention. This has resulted in a steady decrease in hospitalization rates and length of

17 5 hospital stay for those less than 65 years of age. However, National Hospital Discharge Survey data indicate that the rate of hospitalization for older adults continues to rise, (Hall, DeFrances, Williams, Golosinskiy, & Schwartzman, 2010). In 2007 the rate of hospitalization for persons aged 65 and over was 3,395 per 10,000 while the rate of hospitalization for all persons was 1,149 per 10,000 (CDC, 2012b). Comparatively, data from the CDC (2012a) for 2009 showed that the rate of hospitalization for persons aged 65 and over was 3,522 per 10,000 while the rate of hospitalization for all ages combined was 1,181 per 10,000. Additionally, during the same time period the average length of stay increased slightly for those aged 65 and over from 5.6 to 5.7 days compared to 4.8 and 4.9 days for all age groups. The unprecedented increase in the aged 65 and older population will bring with it increased prevalence of disability, frailty, and dependence. Medical and technological advances are allowing people to live longer. For many older adults, particularly those with co-morbidities, this means that they will require hospitalization. Patients expect to receive high quality, state of the art care. The utilization of health care resources for this population will continue to increase, along with the costs associated with hospital care. Paramount among the numerous challenges confronting the health care system today is the need to decrease costs and complications of hospitalization while providing high quality care. Family caregivers, who are knowledgeable and have been found competent in meeting the needs of older relatives in different settings (e.g. home), cannot be overlooked as critical partners in the provision of high quality care in the hospital setting. The hospital setting, however, has unique characteristics that require staff to find

18 6 ways to support and partner with family caregivers to provide better care for older adults. Patients and family caregivers expect that hospital staff will maintain a collaborative and caring relationship not only with the older adult patient, but with the family caregiver as well. In 2001, the Institute of Medicine mandated improvements in the quality of hospital care that included patient and family-centered care. In conjunction with this mandate, the Centers for Medicare and Medicaid Services (CMS) instituted the Hospital Consumer Assessment of Healthcare Provider and Systems (HCAHPS) survey, which is a nationally standardized tool to evaluate a patient s hospital experience and satisfaction (Frampton & Guastello, 2010). Quality performance data for nearly all of the general hospitals in the United States are made available to consumers through Hospital Compare, a consumer-oriented website created by CMS (U.S. Department of Health and Human Services, 2012). Patient-centered hospitals welcome family caregivers as partners in care, not just as visitors. There is an emphasis on staff awareness of the patients needs, patient and family education, support of the family in the care process, and a caring environment that encourages patient mobility and comfort. In addition to increasing patient satisfaction, hospitals benefit from adopting a patient-centered model by reducing length of stay, decreasing adverse events, decreasing operating costs, and having higher employee retention rates (Charmel & Frampton, 2008). Older Adult Population In recent decades, issues related to aging have received increased attention. Much of this attention has been driven by the significant growth projections in the population of older adults (those aged 65 and over). In 1900, there were 3.1 million people aged 65 and

19 7 over living in the United States. By 1960, that number had increased to almost 17 million. In 2010, the number of older adults in the United States had reached 40 million and accounted for about 12% of the total population. It was estimated that by 2030, there will be 72 million older adults living in the United States, and they will account for 19% of the total population (U.S. Department of Health and Human Services, 2011). Older adults aged 85 and over represent the fastest growing demographic in the United States. Their numbers are expected to increase from 5.8 million in 2010 to 8.7 million by In addition, the number of centenarians is expected to increase from 79,000 in 2010 to 208,000 in 2030 (U. S. Census Bureau, 2010). This dramatic increase in the population of older adults will likely increase the need for family caregivers as well as increase the burden on hospitals to meet their health care needs. Family Caregivers The definition of "family caregiver" has changed little over time, with differences observed most frequently with regard to specifying the types of assistance provided or the type of relationship between the caregiver and the care recipient. The National Alliance for Caregiving (2009) defines caregivers as "people age 18 and over who help another person age 18 or older with at least one of 13 tasks that caregivers commonly perform" (p. iv). The 13 tasks are comprised of the five ADLs, feeding, bathing, dressing toileting, and transferring, and eight instrumental activities of daily living (IADLs) (transportation, grocery shopping, housework, managing finances, preparing meals, helping with medications, helping to use the phone, and managing services). In addition to providing help with ADLs and IADLs, family caregivers reported providing care that included

20 8 giving medications or injections, arranging or supervising other unpaid or paid services, advocating with care providers and community resources, and performing physical or medical treatments. The average family caregiver is 50 years of age, female, white, and married; and the family member for whom she is most frequently providing care is her mother (National Alliance for Caregiving, 2009). Caregivers reported spending, on average, 20.4 hours per week providing care for a family member and for an average duration of 4.6 years. Those family caregivers who live with their care recipient reported spending almost twice that amount of time providing care (Family Caregiver Alliance, 2011). Current Knowledge of Family Care Giving During Hospitalization Much of the research examining what family caregivers do for an older relative during a hospitalization was based on standard ADL and IADL tasks along with tasks related to providing emotional support (Auslander, 2011; Laitinen, 1993; Laitinen- Junkkari, Merilainen, & Sinkkonen, 2001; Pena & Diogo, 2009). Findings from some qualitative studies (Jacelon, 2006: Lindhardt, Bolmsjo, & Hallberg, 2006) suggest that the scope of care provided by family caregivers may be larger than previously assumed. However, there are neither studies of the phenomenon using large samples of family caregivers nor a measurement tool that provides a clear and comprehensive picture of the care provided. Li et al., (2000) began to address these issues in their work with hospitalized older adults and their family caregivers. Through interviews with hospitalized older adults, their family caregivers, and nurses, numerous care activities provided by family

21 9 caregivers during hospitalization were revealed. This led to the development of a typology of family care actions, which was used to develop the Family Care Actions Index. The Family Care Actions Index was completed by family caregivers in the randomized, controlled study from which data for this dissertation study was derived. Having a more accurate picture of family care giving during hospitalization provides an opportunity to uncover and explore the variables surrounding this phenomenon that may lead to improvements in the hospital experience and its outcomes. Gaps in Knowledge of Family Care Giving During Hospitalization This dissertation addresses several gaps in knowledge about family care giving for older relatives during their hospitalization. Describing care actions by type and frequency (Aim #1) will address the need to know more about what family caregivers do for their older relatives beyond providing emotional support and personal care. Knowing what family caregivers actually do for their hospitalized older relatives could be very beneficial in helping the staff with care provision, allowing staff to guide family caregivers participation, providing opportunities for education, and supporting the goal of maintaining living styles and routines for older adults and their family caregivers. The exchange of valuable knowledge and information between family caregivers and hospital staff, and how this information could facilitate a positive hospital experience has not been explored. For example, in order for an older relative to take his/her medication successfully, the family caregiver may have a special approach that is successful, or perhaps there is a specific toileting routine that maximizes safety. Providing opportunities for partnership between family caregivers and hospital staff could improve

22 10 the process and outcomes of care, as well as patient and family satisfaction. It could also serve as the foundation for developing interventions for professional caregivers to be able to recognize how family caregivers can help and how to integrate family caregivers in the plan of care. Better understanding of, and encouragement of family caregivers involvement in hospital care of their older relative may also help to reduce adverse outcomes of hospitalization (acute confusion, falls, nutrition problems, functional decline) that are common in older adult patients (Inouye et al., 2008). Exploring relationships between care actions and family caregiver characteristics (Aim #2) may reveal some of the variables that might be related to family caregiver participation. The level of participation in care may be different for family caregivers depending on their characteristics. Some family caregivers may not want to provide care while their relative is in the hospital, and may view the hospitalization as a respite from their care giving responsibilities. However, there may be family caregivers who would prefer to maintain their care giving relationship. It would be beneficial for staff to know if family caregivers preferred to be involved in care during hospitalization so that a collaborative effort could be initiated immediately with expectations for family caregivers and staff clearly delineated in the plan of care. Very little is known about specific groups of family caregivers, such as spouses compared with non-spouses, how these groups might differ in their care giving, and how these differences might be addressed to maximize outcomes of the care giving situation. Evaluating the extent and configuration of caregiver engagement in various types of care actions (Aim #3) may reveal characteristics and attributes of family caregivers

23 11 and their older relatives which could influence their participation in care and may be useful in guiding staff to develop individualized plans for intervention and education. Addressing the above knowledge gaps has the potential to enhance the provision of patient centered care and improve patient and family satisfaction during hospitalization. The financial survival of hospitals today is directly linked to the ability of the staff to provide patients and their families with a satisfactory hospital experience, devoid of any complications or adverse events. It is possible that family caregivers might play a valuable role in that goal. The Importance of Supporting Family Caregivers Family caregivers are the primary source of help to older relatives with health care needs. They number 43.5 million and provide a full spectrum of care that includes assisting with ADLs and IADLs, administering medications, providing nursing and medical treatments, managing financial and household matters, and coordinating care among health care providers, agencies, and other services (Family Caregiver Alliance, 2011). Without the involvement of family caregivers, the burden on the health care system would be devastating. When older relatives are hospitalized, family caregivers often continue providing care with little recognition of the role they play and minimal direction or support. It is imperative that health care professionals make fundamental changes in how care is provided to older adults in the hospital to be more in line with consumer expectations of patient and family-centered care. With this introduction to the significance of the research problem and the study aims, Chapter 2 follows with an in-depth review of the literature on the family caregiver

24 12 role in caring for older relatives. The review will include the home and long-term settings as well as the hospital setting, as older adults are admitted to the hospital from either their home or a long-term care setting. The role family caregivers establish in these two settings often influences their role in the hospital. Within the hospital setting, literature on the discharge planning process, nurses perceptions of family care giving in the hospital, and family care giving of older adults with dementia are presented. Family caregivers often face challenges in these aspects of hospital care. Literature on interventions for family caregivers during hospitalization is also presented. Finally, literature on family caregiver preferences for care and the relationship quality between the family caregiver and older relative, both of which are a focus of this study, are presented.

25 13 CHAPTER 2 Background and Orientation to the Problem Although research on family care giving has expanded greatly over the past 20 years, research examining the activities in which family caregivers participate with an older, cognitively intact, hospitalized, relative is fairly limited. The majority of research on family care giving for an older relative has been conducted in community-based home settings. Studies focusing on institutional settings, such as assisted living facilities and nursing homes have also been done, but to a lesser degree. Family care giving in the hospital setting has received much less attention. In this chapter, following a brief description of the search strategy, studies of the manner in which family caregivers carry out their roles in the home, long-term care, hospital, and intensive care unit (ICU) settings will be discussed. Within the hospital setting, research on the related topics of discharge planning, nurses perceptions of family care giving, interventions designed for family caregivers of hospitalized older relatives, and experiences of family caregivers of hospitalized older relatives with dementia will be discussed. Literature about family member preferences for care giving and family caregiver perceptions of the quality of their relationships with their older relatives will be presented. The chapter will conclude with a description of the study from which data for this dissertation were drawn. Review of Literature Search Strategy A systematic approach was used to search the literature for studies of family care giving role in the home, long-term care, hospital, and ICU settings. PubMed and

26 14 CINAHL were searched using the keywords elderly/aged, family caregiver, family carer, informal care giving, family involvement, family participation, and family role with each specific setting. Keywords used were hospitalization, intensive care, critical care, longterm care, skilled nursing facility, nursing home, assisted living facility, care facility, care home, residential facility, home care, home care services, home health care, and community-based care. For all articles retained using the database searches, author searches were done on each listed author. The snowballing technique was then used to identify possible additional articles used as references in the retained articles. Finally, the Web of Science database was used to search for all articles that cited studies published by Hong Li. Articles were retained if they focused on family caregiver actions, activities, involvement, or participation, with primarily older adults over the age of 65, without cognitive impairment or any other specific medical condition. Appendix A shows a summary of the literature search strategy including the number of articles yielded and retained for each setting, and the criteria used for inclusion. Family Caregiver Role in Caring for an Older Relative in the Home Setting The majority of research on family caregiver roles has focused on care provided in either the caregiver s home or the care recipient s home. Family caregivers who reside with older relatives typically provide more frequent care and more types of care compared to family caregivers who do not reside with older relatives (Donelan et al., 2002; Farberman et al., 2003; National Alliance for Caregiving, 2009; Penrod, Kane, Finch, & Kane, 1998). Reported hours spent in care giving activities ranged from 20 hours per week (Kane, Reinardy, Penrod, & Huck, 1999) to 88 hours per week

27 15 (Farberman et al., 2003). The "Level of Burden Index" was used in several studies (Donelan et al., 2002; Farberman et al., 2003; National Alliance for Caregiving, 2009; Navaie-Waliser, Spriggs, & Feldman, 2002). The level of caregiver burden, ranging from 1 (low burden) to 5 (high burden), is derived from the number of ADLs and IADLs the caregiver performs, and the number of hours the caregiver spends providing care. In a 2009 National Alliance for Caregiving survey, levels of burden reported by caregivers were: 45% low burden, 20% medium burden, and 32% high burden. Older caregivers and caregivers who rated their own health as fair or poor tended to have a higher level of burden. The care activities provided by family caregivers in the home setting covered a wide range. Table 1 (on pages 21-23) shows, in descending order, care giving activities performed by family caregivers for older relatives in the home setting. Assistance with instrumental activities of daily living (IADLs). Care giving activities in the home setting most frequently consist of assistance with IADLs. According to the National Alliance for Caregiving (2009), on average, caregivers provide assistance with four IADLs. Transportation and assistance with shopping were the most frequently reported IADLs that caregivers performed with some studies showing the rate to be as high as 80% for each (Donelan et al., 2002; Farberman et al., 2003; Kane et al., 1999; Lai, Luk, & Andruske, 2007; National Alliance for Caregiving, 2009; Navaie- Waliser et al., 2002; Ory, Hoffman, Yee, Tennstedt, & Schulz, 1999; Wolff & Kasper, 2006). Reported frequency of assistance with housework ranged from 42% (Jervis, Boland, & Fickenscher, 2010) to 75% (National Alliance for Caregiving, 2009). Reported frequency of assistance with meal preparation ranged from 37% (Jervis et al.,

28 ) to 64% (National Alliance for Caregiving, 2009). About one half of caregivers reported assisting older relatives with finances (National Alliance for Caregiving, 2009; Ory et al., 1999; Wilkins, Bruce, & Sirey, 2009; Wolff & Kasper, 2006). Reported caregiver assistance with medications, including injections, ranged from 37% (Ory et al., 1999) to 42% (National Alliance for Caregiving, 2009; Wolff & Kasper, 2006). Family caregivers also spent a fair amount of time arranging for and supervising other caregivers. These included informal unpaid caregivers such as family or friends, as well as paid caregivers such as nurses or aides. Caregiver reports of providing this service were in the range of 29% (Donelan et al., 2002) to 53% (Ory et al., 1999). Assistance with activities of daily living (ADLs). Family caregivers also provide a great deal of assistance with ADLs. The National Alliance for Caregiving (2009) reported that 61% of family caregivers provide assistance with at least one ADL. Thirty percent of caregivers provide assistance with three or more ADLs. Bathing, transferring, and dressing were the ADLs in which caregivers provided the most assistance (Donelan et al., 2002; Lai et al., 2007; National Alliance for Caregiving, 2009). Assistance with toileting and management of incontinence was reported by about 24% of caregivers (Donelan et al., 2002; National Alliance for Caregiving, 2009; Ory et al., 1999). Assistance with feeding was consistently the ADL for which caregivers provided the least amount of help. About 18% of caregivers reported assisting with feeding (Donelan et al., 2002; National Alliance for Caregiving, 2009; Ory et al., 1999). Medical care and treatments. Findings from a number of studies indicated that family caregivers are responsible for providing treatments that are generally considered

29 17 to be nursing or medical care. Donelan et al., (2002) reported that 19% of caregivers performed dressing changes, 15% managed medical equipment, and 39% administered medications. Navaie-Waliser et al., (2002) reported similar levels of participation for such activities. Ekwall, Sivberg, and Hallberg (2004) reported that 11% of caregivers provided medical care. Family caregivers in Grimmer, Moss, and Falco s (2004) qualitative study reported completing medical tasks such as changing dressings, monitoring blood sugar, monitoring blood pressure, and managing medications. Most of the 24 participants indicated that they felt untrained and unprepared to assume this level of care. Bookman and Harrington (2007) did in-depth interviews of 50 family caregivers of hospital discharged older relatives. Family caregivers reported being responsible for a significant amount of medical care and treatments, including administering medications, changing dressings, managing intravenous therapy, checking vital signs, monitoring blood sugar, and monitoring weight. Wilkins et al., (2009) interviewed family caregivers of medically ill homebound older adults. Ninety-two percent of family caregivers reported being responsible for monitoring symptoms, 68% for monitoring medications, and 55% for monitoring for medication side effects. Care management. Family caregivers perform a number of care giving activities, aside from direct assistance with ADLs, IADLs, and medical treatments. They report spending considerable amounts of time communicating with physicians and other healthcare providers and accompanying their older relatives to physician visits (Ekwall et al., 2004; Grimmer et al., 2004; Wilkins et al., 2009). Bookman and Harrington (2007) describe the family caregiver as an unofficial geriatric case manager, who manages

30 18 relationships among physicians and other healthcare providers, schedules and attends physician visits, communicates findings from physicians to other healthcare providers, manages medication changes, arranges for and manages aide services and medical equipment, identifies and contacts appropriate agencies and services, and builds and maintains relationships with all parties involved. Family caregivers frequently report that they advocate on behalf of the older relative in terms of overseeing and assuring high quality of needed care and services (Bookman & Harrington, 2007; Grimmer et al., 2004; National Alliance for Caregiving, 2009; Navaie-Waliser et al., 2002). Bookman and Harrington (2007) further described such family caregivers as walking medical records. Family caregivers supply medical information to numerous providers and healthcare entities, communicate important information about their older relatives, including medications, allergies, functional ability, and how the relatives looked and acted when they were healthy. They also keep records and logs of admissions and episodes of care, maintaining current lists and tracking changes in condition, medications, and treatment. Schumacker, Beck, and Marren (2006) described the invisible aspects of care that family caregivers can accomplish through social visits and staying in touch with their older relatives. These include anticipating needs of the older relative, preventing complications, and protecting the older relative from his/her own reality of needing care. Summary. From these studies, it is clear that family caregivers in the home setting provide a large and varied amount of care in addition to ADLs and IADLs. Intensity of care ranges from providing social interaction to performing highly skilled nursing and medical procedures. Utilizing Ekwall et al s., (2004) typology, family

31 19 caregivers regularly provide anticipatory care, preventive care, supervisory care, and preservative care. They are truly involved in all aspects of the older relatives life. Several benefits of family care giving in the home setting have been reported. Kane et al., (1999) suggested that functional status can be improved with family care giving along with coordination from professional caregivers. Penrod et al., (1998) demonstrated that six weeks after hospital discharge of an older relative, the majority of family caregivers reported feeling a sense of achievement. Increased affection was reported by 43%, satisfaction at seeing the older relative improve was reported by 22%, closer family bond was reported by 8%, and satisfaction at fulfilling a sense of duty was reported by 20% of family caregivers. Gratitude for improving the quality of care of the older relative, love toward the older relative, personal satisfaction, and fulfilling a family obligation were benefits of care giving reported by family caregivers (Farberman et al., 2003). Limitations of extant research. Most of the studies included in this review of family care giving in the home setting utilized a quantitative design with few utilizing qualitative research approaches. Most involved data collection via interview, either in person or by phone. In many studies, participants were presented with pre-determined task lists, (generally restricted to standard or modified versions of ADL and IADL tasks or lists developed by authors or nurses) and were then asked to indicate the tasks in which they participated (Donelan et al., 2002; Kane et al., 1999; Lai et al., 2007; National Alliance for Caregiving, 2009; Navaie-Waliser et al., 2002; Ory et al., 1999; Penrod et al., 1998; Wolff & Kasper, 2006). Ekwall et al., (2004) developed questionnaire items

32 20 from a typology that was quite comprehensive. However, they constructed only one item for each dimension. Had they constructed a larger number of items for each dimension, they might have captured a more comprehensive view of family care giving for an older relative. Although data collection may be facilitated by presenting participants with predetermined lists of tasks, it is likely that informal caregivers perform other types of care giving activities that are not captured by focusing on ADLs and IADLs. It would be difficult to acknowledge the full scope of care without considering care activities outside this limited view. Some of the tasks presented were vague or included more than one activity. Participants may have had difficulty deciding if they performed that particular task if they had done one or two of the tasks within the task, or if they could not determine the meaning of the task. In two of the older studies, (Kane et al., 1999; Penrod et al., 1998) activities performed by family caregivers may have been influenced by medical diagnosis and might limit the generalizability of the findings. Few studies included sufficient numbers of ethnic groups (Farberman et al., 2003; National Alliance for Caregiving, 2009) with just one study focusing on American Indians (Jervis et al., 2010). This was the only study to discuss the concept of reciprocity of care between the older relative and the caregiver. Researchers studying family care giving in the home setting also have paid very little attention to the important family caregiver roles of providing emotional support and maintaining social relationships between themselves and their older relatives.

33 Table 1 Care activities provided by family caregivers for older relatives in the home setting Author Year Sample Hours/week Spent (mean) Care activities Penrod, Kane, Finch, & Kane Kane, Reinardy, Penrod, & Huck Ory, Hoffman, Yee, Tennstedt, & Schulz Donelan, Hill, Hoffman, Scoles, Hollander, Feldman, Levine, & Gould Navaie-Waliser, Spriggs, & Feldman family caregivers family caregivers family caregivers family caregivers caregivers 34.7 personal care, household chores, arranged for other services, managed business affairs, provided general supervision, watched to make sure the relative was safe 24.5 shopping, transportation, bathing, dressing, finances, cooking, supervision, transfer, walking, laundry, cleaning, chores, toileting, physical therapy, reading, assisted with medications, assisted with eating 12.5 transportation, grocery shopping, housework, meal prep, managed finances, arranged/supervised home services, gave meds/injections, helped with getting out of bed, getting dressed, toileting, bathing, feeding, incontinence care 22.5 ADLs: helped with dressing, transferring, walking, bathing, feeding, managing incontinence IADLS: helped with errands, transportation, housework, using the phone, preparing meals, arranging for other home services MEDICAL: administered medications, did dressing changes, managed equipment 20 IADL: shopping, transportation, housework, phone calls, meal prep, assist with finances, assist with securing services, administer meds, dressing changes ADL: dressing, transferring, ambulating, bathing, incontinence care, feeding Farberman et al family caregivers 22.1 transportation, shopping, housework, prepared meals, managed finances, arranged outside services, assisted with transferring, dressing, bathing, toileting, feeding, incontinent care, giving medications 21

34 Author Year Sample Hours/week Spent (mean) Care activities Ekwall, Sivberg, & Hallbert informal caregivers 20 contact with and visits to the doctor, adapted own activities to be prepared if something happened, helped regularly with cooking, cleaning, shopping, kept in touch at least once a week to prevent problems, assisted with ROM, walking, helped with personal care, helped with medical care Grimmer & Falco primary carers NR assisted with hygiene, dressing, toileting, changing dressings, injections, monitoring blood sugars, monitoring blood pressure, managing and delivering medications, assisted with walking, transferring, setting up walking aids, management and advocated, attended MD appointments, kept health diaries, monitored medications, provided counseling, completed household tasks, cooking, cleaning, shopping, home maintenance, assured the relative was safe, organized sitters Wolff & Kasper informal caregivers Bookman & Harrington family caregivers 29 assistance with shopping, transportation, household tasks, finances, personal care, nursing/medical care, medication administration, indoor mobility NR unofficial geriatric case manager: managed relationships among MDs and between healthcare professionals, communicated findings of MDs to other MDs and suggested action, scheduled MD appointments, managed medication changes and prescriptions, arranged for aide services, managed and supervised the aide services, dealt with high turnover issues, oriented aides to the relative, arranged and provided housekeeping, arranged for DME, identified and contacted community services, built and maintained relationships; Walking medical record: dealt with institutions privacy regulations to ensure accurate records, supplied medical information, communicated important information about the relative, kept logs, files of course of events, maintained current lists, tracked changes in condition and treatments; Patient advocate: took on staff functions in facilities when staff are short, monitor diets, meds, responses to treatments, provide food the relative likes, provide medical care, change dressings, manage IVs, monitor vital signs, assure quality of care, be the eyes, ears of the doctor, assure appropriate services, ask questions 22

35 Author Year Sample Hours/week Spent (mean) Care activities Lai, Luk, & Andruske family caregivers NR ADL: assistance with ambulating, transfer, bathing, toileting, dressing, grooming, eating IADL: interpretation, transportation, shopping, money management, using the phone, housework, meal prep, medications Ambulation National Alliance for Caregiving caregivers 19 ADLs: getting in and out of bed and chair, dressing, toileting, bathing, managing incontinence, feeding IADLs: transportation, housework, shopping, meal prep, managing finances, giving medications and injections, arranging for other services Advocating with care providers, government agencies Perform physical or medical therapies or treatments Wilkins, Bruce, & Sirey family caregivers NR emotional support, monitor symptoms, speak with doctors, provide coping strategies, help solve everyday problems, monitor medications, help with insurance documentation and coverage issues, help with household chores, help with finances, help with personal care Jervis, Boland, & Fickenscher family caregivers NR ADLS: assisted with transferring, grooming, dressing IADLS: assisted with housekeeping, preparing meals, shopping, transportation, laundry, using the phone, taking medications, finances 23