Caught Between Love and Money: The Experiences of Paid Family Caregivers

This paper considers the experiences of family home care providers, paid an hourly wage by California’s In Home Supportive Services program to care for disabled or elderly relatives. These caregivers are unique in that they provide care in what Arlie Hochschild calls the “third sector” of social life, where norms and responsibilities tied to work and family intersect. Drawing on in-depth interviews and ethnographic observations of family home care providers, we find that providers perceive their paid caregiving as deviant behavior that violates social norms surrounding family care, i.e. that people should not be paid for the care of kin. Family caregivers manage the norm violation associated with their carework by offering “accounts” that 1) emphasize the tasks and skill associated with caregiving and 2) by framing their carework as a public good that benefits the larger community. These accounts allow family providers to distance themselves from the norm violation of receiving a wage for care and to reconstruct their actions in a positive light.     

Husbands and sons in the United States and Japan: Cultural expectations and caregiving experiences

In the United States and Japan, social and demographic changes are placing pressure on men to become involved in elder care. In Japan, 15 percent of caregivers to the elderly are men compared with 28 percent in the United States. This qualitative study uses in-depth interviews with 15 Japanese and 30 American men to compare their daily caregiving experiences and examine the impact of culture on their roles. We identify common elements as well as differences in husbands' and sons' motivations to take on this role, the tasks they perform, the impact on their lives, and societal responses. Culture is a factor in the social shaping of the caregiving experience through different societal expectations about the roles, coupled with different family structure, different caregiving ideals, different views on dependency, and different views on self-expression and on the need to maintain harmonious relationships.     

Family support in late life: A review of the literature on aging,disability, and family caregiving

ABSTRACT

For older adults and people with disabilities in the United States, family caregiving is an important part of remaining at home and in the community. As care recipients and caregivers age, family dynamics change, and the health, social, and financial impacts of this (largely unremunerated) work have implications for individuals, families, and social policy. In this review, the authors map the literature across multiple fields related to disability and aging to understand caregiving in late life, what it means to be an older caregiver and/or to care for older people. The authors summarize the findings of 97 articles to address the care, services, and supports family caregivers provide for older adults; negative and positive impacts for caregivers serving in this role; supports that family members use or need; and societal impact of family caregiving. Much of the literature describes the work family caregivers provide and negative impacts of caregiving. Less attention is devoted to caregiving benefits, supports used by family caregivers, and societal impacts. The authors conclude with an agenda for future research that attends to the need for research that includes: more diverse samples, new types of caregivers, longitudinal data, qualitative data and analysis, and comparative research.     

Paid family caregiving: a review of progress and policies

Policymakers in the United States have begun to examine solutions that encourage increased sharing of caregiving responsibilities between government and family. Initiatives in Sweden and the United Kingdom are now in place. Support includes a care leave policy implemented at the federal level, paying salaries to family members when caregiving is a regular job, providing job training to salaried caregivers when their personal caregiving experience ends, community-based programs for caregivers, and allowances to be used for providing care to an elderly person. In the United States, 13 states pay caregivers as Medicaid providers. Policymakers have considered tax incentives and, in 1975, U.S. Senate Bill 1161 was introduced but failed as an attempt to provide cash subsidies to families caring for the elderly. A proposal has been made to expand the Temporary Disability Model to include care of family members of all ages by providing adequate wage replacement to assist caregivers. At present, 34 states provide some type of economic support for caregivers. Research is needed to determine what types of programs are most acceptable and beneficial to caregivers as well as cost effective for government.     

When caregivers are in need of care: African-American caregivers' preferences for their own later life care

To “care for one's own” is a cultural expectation within a larger ethic of care in the African-American community. Applied to caregiving of aging elders, this ethic of care emphasizes the importance of providing in-home family care rather than opting for out-of-home placement. This study explores why a subset of African-American caregivers prefer or are open to out-of-home placement over in-home family care if they are no longer able to care for themselves. In-depth interviews with 24 family caregivers are analyzed. Three themes emerged including the desire to “spare our children” the burden associated with caregiving, viewing the next generation of potential caregivers as unequipped for the task, and having no one left to provide care for them.     

Upping the ante: relative caregivers' perceptions of changes in child welfare policies

Thirty-five caregivers of related children who were in the custody of the child welfare system were interviewed individually or in focus groups as the state child welfare system implemented new federal and state policies encouraging these caregivers to adopt or assume guardianship of the children in their care. Interviews were transcribed and analyzed using qualitative methods. Issues of concern included emergency entrance into caregiving; the simultaneous satisfaction and burden of caregiving; obstacles to caregiving, adoption, or guardianship; complex changes in family dynamics following placement of children; sources of support; and caution regarding adoption or guardianship. The caregivers also offered recommendations for the child welfare system. Policy, practice, and research implications are discussed.     

Experiences of Informal Caregivers of Older Adults Transitioned From Nursing Homes to the Community Through the Money Follows the Person Demonstration

This study examined experiences of 156 informal caregivers of older adults who transitioned to the community through the Connecticut Money Follows the Person (MFP) Rebalancing Demonstration after prolonged nursing home stays. Caregiver burden, positive aspects of caregiving, depressive symptoms, anxiety, and comparative subjective stress were examined in relation to caregiver demographics and care receiver characteristics with a cross-sectional survey. Caregivers reported low burden, depressive symptoms, and anxiety, and fairly high levels of positive aspects of caregiving and satisfaction with community services. Most caregivers were less stressed compared to the time the care recipient was in, or before they entered, a nursing home. Live-in caregivers experienced more positive aspects of caregiving, but adult children reported higher burden than other caregivers. Unmet service needs also increased caregiver burden. Programs like MFP are a viable option with broadly positive outcomes from a caregiver’s perspective. Enthusiasm for increasing access to community care is growing for older adults who otherwise would reside in nursing homes for extended periods. Identifying unmet service needs and needs for targeted functional support could further enhance caregiver experiences and contribute to the successful transition of older adults to the community.     

The good daughters: Acculturation and caregiving among Mexican-American women

This study explores the dynamics of informal care of the elderly in Mexican-American families. Quantitative and qualitative data drawn from interviews with caregivers are presented, which illustrate how acculturation affects the caregiving experience itself and its consequences in terms of stress, burden, rewards, and overall satisfaction. The burden of caregiving for both highly acculturated and less acculturated caregivers was substantial, but there were dramatic differences between the groups in levels of satisfaction. Contrary to expectations, the less acculturated caregivers experienced greater stress, burden, and significantly lower satisfaction even though they were more clearly fulfilling role obligations and they had more family members available to assist with caregiving. Implications for policy and practice are discussed.     

Spousal motivations of care for demented older adults: A cross-cultural comparison of Greek and American female caregivers

Purpose of the study: This study examines motivations for caregiving in American and Greek female spousal caregivers (FSCGs), and identifies cross-culturally equivalent and culturally specific types of motivations for care of a demented spouse. Design and Methods: Thirty American women and 44 Greek women who were caring for their demented husbands were surveyed about their motivations for caregiving. Results: Greek and American FSCGs were dissimilar in the extent to which they reported being motivated by a desire to maintain family harmony. Greek and American caregivers also differed in how often they cited financial reasons, wanting to please their spouse, being against institutionalization, and giving the best care as motivations for care. Implications: Culturally related differences in caregiving motivations may translate into differences in the extent to which motivations result in adaptive or maladaptive outcome for the caregiver and the care recipient.     

Joy and sorrow: Explaining Chinese caregivers' reward and stress

This study explores positive and negative aspects of Chinese caregivers' experience, specifically, caregiving social reward as well as depression. Based on data collected in 1997–1999 with 110 caregivers who were then taking care of physically dependent parents or parents-in-law, this study finds that caregivers caring for elder parents with pensions reported higher levels of social rewards. Caregivers who were unemployed and had poor self-rated health reported higher levels of depression. Cultural values were found to have two dimensions of effect on caregiving experiences: while caregivers' report of strong filial responsibility was positively related to caregivers' depression scores, caregivers' report of social pressure was negatively related to their report of social reward. The author argues that the dual effect of family economic conditions and caregivers' cultural values calls for greater attention to elders' financial stability and caregivers' psychological well-being.     

African American Informal Support Networks

Abstract

This study examined African American informal support network functioning utilizing Vaux's (1998) reciprocal exchange model. Ten African American caregivers of relatives with severe mental illness and their main informal helpers were interviewed using a semi-structured questionnaire. In 8 of the 10 African American families interviewed, one close relative, called a “main supporter,” assumed major responsibility, comparable to that of the primary caregiver, for care and supervision of the family member with mental illness. Main supporters felt that their family helper role, although stressful at times, gave meaning and purpose to their lives. Five main supporter-primary caregiver pairs formed 'joint households' to share economic and human resources and to facilitate caregiving duties. Social work intervention for caregiving families should provide assistance to both primary caregivers and their informal supporters, particularly main supporters.     

Effects of Caregiving on Employment and Economic Costs of Chinese Family Caregivers in Canada

A telephone survey with 339 randomly selected Chinese Canadian caregivers examined the employment and economic costs of family caregiving for the elderly. Although the Chinese culture places a strong emphasis on filial obligation, caregiving is not without economic consequences. Caregiver’s age, financial adequacy, and employment, caring for an additional care receiver, and levels of assistance in Activities of Daily Living (ADL), were the predictors for economic costs perceived by family caregivers. Caregiver’s age, caring for an additional care receiver, and care receiver’s financial adequacy were significant predictors for male caregivers. Caregiver’s financial adequacy and higher levels of assistance in ADL were the predictors for female caregivers. Policies to support family caregivers should not just focus on the social aspect, but also the financial needs.     

Understanding caregiving patterns, motivations, and resource needs of subsidized family, friend, and neighbor child care providers

Family, friend, and neighbor (FFN) caregivers play important roles in delivering subsidized noncustodial child care. Yet, little is known about these noncustodial caregivers. This article profiles the caregiving experiences, motivations, and resource needs of these providers, based on a survey of 301 randomly selected FFN providers in one state. Kecommendations are offered for strengthening public supports to enhance the quality of this form of caregiving.     

“Ours is the Strangest Situation,Ours is Different from Most Peoples”: Spousal Caregiver Perspectives on the Complex Challenges of Dementia Caregiving in Late-Life Marriage

The relationship between the person with dementia with family caregivers is a key factor in maintaining a sense of self and personhood. Spousal caregiving in particular can create a world of shared meaning, and in the context of the presence of cognitive decline in one spouse, couple hood is essential to a full understanding of how spouses live with and respond to the impact of dementia. While much research has focused on the strengths of long-term married couples caring for a spouse with dementia, there is currently little research on how dementia impacts couples in late-life marriage. This qualitative case study focusses on two female caregivers in late-life marriages negotiating the challenges of caregiving for a spouse with dementia. Spouse 1 returned to live with her ex-husband in order to care for him through his dementia journey and they recently remarried. Spouse 2 married a close friend of the family prior to his dementia diagnosis. While participant shared perspectives include: (1) family dynamics, (2) isolation, (3) financial concerns, and (4) acceptance of their role in their spouse’s dementia journey, their long-term outlooks are divergent due to the complexity of their motives for entering in to late-life marriage.     

The family caregiving context among adults with disabilities: A review of the research on developmental disabilities,serious mental illness,and traumatic brain injury

ABSTRACT

A majority of adults with serious disabilities are cared for in the home by family members. Guided by an ecological framework, this article presents the findings of a literature review of research on family caregiving and family support for adults with disabilities. This review included 33 research studies published between 2000 and 2015 focused on three disabilities: Developmental disabilities, serious mental illnesses, and traumatic brain injury. A synthesis of the findings underscores the critical role that family caregivers occupy in addressing the needs of their loved one with a disability; however, the needs of the caregiver are insufficiently met by existing service approaches. A better understanding of the unique needs and strengths of the family support context of caregivers and care recipients is needed, giving greater attention to ethnic, racial, and cultural considerations in future research.     

What Are Strategies to Advance Policies Supporting Family Caregivers? Promising Approaches From a Statewide Task Force

Family caregivers are the cornerstone of the long-term supports and services infrastructure in the United States, yet they often contend with many challenges related to this role. Public policy has been slow to change, leaving many caregivers vulnerable to health and economic consequences. Using models of policy making, we identify barriers to advancing policies that support family caregivers and overcome policy drift. We draw on discussions from the California Task Force on Family Caregiving as it prepares state policy recommendations. Identified strategies include identification of caregivers in health care and workplace settings to promote political consciousness raising, collecting and reporting on data that frame caregiving as a policy problem, borrowing policies and language from overlapping fields to emulate their policy successes, and presenting supportive caregiver policies as solutions to other policy problems. By presenting specific strategic approaches to advance caregiving policies, we provide tools to address the growing gap between caregiver needs and policy responses.     

Informal caregiving for elders in Sweden: an analysis of current policy developments

In Sweden, care of elderly people is a public responsibility. There are comprehensive public policies and programs providing health care, social services, pensions, and other forms of social insurance. Even so, families are still the major providers of care for older people. In the 1990s, the family was "rediscovered" regarding eldercare in Sweden. New policies and legislative changes were promoted to support family caregivers. The development of services and support for caregivers at the municipal level has been stimulated through the use of national grants. As a result, family caregivers have received more recognition and are now more visible. However, the "Swedish model" of publicly financed services and universal care has difficulty addressing caregivers. Reductions in institutional care and cutbacks in public services have had negative repercussions for caregivers and may explain why research shows that family caregiving is expanding. At the same time, a growing "caregivers movement" is lobbying local and national governments to provide more easily accessible, flexible, and tailored support. In 2009, the Swedish Parliament passed a new law that states: "Municipalities are obliged to offer support to persons caring for people with chronic illnesses, elderly people, or people with functional disabilities." The question is whether the new legislation represents a paradigm shift from a welfare system focused on the individual to a more family-oriented system. If so, what are the driving forces, motives, and consequences of this development for the different stakeholders? This will be the starting point for a policy analysis of current developments in family caregiving of elderly people in Sweden.     

Family Caregiver Communication in the ICU: Toward a Relational View of Health Literacy

We interviewed 18 family caregivers about their communication experiences in the ICUs at an urban hospital. Analysis of their narratives suggests health literacy is important in family caregiver/healthcare provider communication, especially as complicated illnesses move the caregiver deeper into decision making. Using the domains of Yuen et al.’s conceptual model of caregiver health literacy (2015), we identified three themes within the context of ICU communication: agency, coordinated communication, and caregiver’s evolving role. We saw family caregivers negotiating domains of health literacy as they built upon knowledge of the patient’s needs, their rights as family caregivers, and the hierarchy of the professional staff. We found that these narratives represent co-created, or relational communication, rather than individual health literacy skills. Conceptualized in the transaction of relationship, health literacy is enacted; it is socially constructed and is the scaffolding upon which family caregivers make decisions, care for their loved one, and care for themselves.     

Rural Kinship Caregivers' Perceptions of Child Well-Being: The Use of Attribution Theory

Sixty-one rural, southwestern U.S. kinship caregivers were asked about their experiences and how those experiences influence the well-being of the 122 children in their care. They reported high levels of caregiving readiness/capacity and parenting abilities. Attribution theory, the manner in which people associate behavior, is used to interpret the findings and provide a set of practice, programming, and policy recommendations.