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.     

A review of the biopsychosocial aspects of caregiving for aging family members

With the ever-increasing growth in the aging population, the need for care providers will also continue to rise. Many of these caregivers will provide informal care to family members and friends at a price to their own physical, psychological, and social well-being. This article examines the phenomenon of caregiving and provides a review of the biological, psychological, and social impacts of caregiving to care providers. George Engel’s biopsychosocial model is explored to examine the biological, psychological, and social factors that can affect a caregiver’s health and well-being. This article further explores social work practice implications and strategies for future intervention to reduce caregiver burnout and aid in their self-preservation.     

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.     

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.     

Fatherhood: Comparison Between Divorced Custodial Fathers,Married Fathers,and Divorced Non-Custodial Fathers in Israel

Paternal involvement and acceptance were compared among 218 custodial fathers, 222 married fathers, and 105 divorced noncustodial fathers. Findings show that the custodial fathers were more involved with their children, coordinated less with their children’s mother, and viewed their children as more difficult than the other fathers. Two regression analyses were conducted. One revealed that greater paternal involvement was predicted by greater self-differentiation, greater sense of having received care from one’s own father, and a less avoidant caregiving disposition. The other showed that greater paternal acceptance was predicted by greater self-differentiation, greater sense of having received care from one’s own father, and a less anxious caregiving disposition. Finally, the findings show that coparenting, social support, and sense of the child as difficult moderated the associations between the fathers’ personal variables and their involvement, but not their acceptance.     

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.     

The influence of caregiving stressors, social support, and caregiving appraisal on marital functioning among African American wife caregivers

Using a stress and coping framework, we examined the influence of caregiving stressors, social support, and caregiving appraisal on the marital functioning of 100 African American wife caregivers. Results of separate multivariate analyses revealed received church support, caregiving burden, and caregiving satisfaction significantly predicted wives' marital functioning, when caregivers' background characteristics (age and education), length of caregiving, whether first marriage, and urban versus rural location were controlled. Receiving church support was associated with increased marital functioning. Lower levels of caregiving burden were associated with increased marital functioning. Higher levels of caregiving satisfaction were associated with increased marital functioning. Findings illuminate wives' caregiving and marital experiences, and have implications for family therapy and future research.     

Gay Bars and Serendipity

Abstract

HIV/AIDS continues to be a serious public health issue. As HIV changes from an acute disease to a more chronic illness, it places increased responsibility on family caregivers to provide on-going assistance. Based on a conceptual model of caregiving resilience, this study found high variation in caregiving outcomes with many caregivers demonstrating high levels of well-being despite adverse life circumstances. Factors that contributed significantly to caregiver well-being included income, caregiver health, discrimination, multiple loss, dispositional optimism and self-empowerment. These findings suggest that HIV/AIDS and caregiving entail more than stress and distress and that future research needs to consider caregiving within the context of a historically disadvantaged community, resilience of informal caregivers, and risk and protective factors at the personal, cultural and community levels. Such information is necessary to design community-based interventions to support informal caregivers and persons living with HIV/AIDS.     

Caregiving transitions: Developmental and gendered perspectives

Providing care for family members is a life event that both reflects and influences family dynamics. Caregiving careers, or the length of time a person provides care, are characterized by a series of transitions to which they must continuously adapt. Women are more likely than men to assume the caregiver role and this role encompasses gender inequalities associated with work and caregiving expectations. This article presents qualitative data from interviews conducted with caregivers who participated in a community-based supportive services program. The experiences of these women provide insight into how caregivers transition into their role, strategies for supporting new and experienced caregivers, and their concerns for their future. Developmental and gendered perspectives of caregiving were used as a context to analyze their experiences.     

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.     

Gender and intimate caregiving for the elderly in Hong Kong

This paper analyzes the special challenges posed by caregiving provided by adult children to their physically impaired parents and in-laws, particularly as they relate to the issues of gendered eldercare and caregiving stress. Through the use of 16 semi-structured intensive interviews conducted in Hong Kong, we find that the discourses on sexualized and gendered bodies create formidable obstacles to the caregiving process. The sexual taboo in its various manifestations induces discomfit and even repulsion in situations where private parts of the body of the elderly are exposed and touched. Such hindrances create conflicts and stress for caregivers and care receivers alike, especially for women caregivers due to the social expectation that they are “natural” caregivers. Our study suggests that the key to overcoming such obstacles depends on a strong sense of filial gratitude, as well as the successful development of a respectful caregiving relationship between children and parents.     

Factors Associated with Depressive Symptoms Among Latino Family Dementia Caregivers

ABSTRACT

Caregiving to a person affected with an irreversible, late onset dementia can be an arduous challenge. Utilizing Pearlin and colleagues' (1990) and Lawton and colleagues' (1989; 1991) stress process model of caregiving, the factors associated with depressive symptoms among Latino¹ family dementia caregivers were examined. Problematic behavior of the dementia-affected person was found to be the most important factor associated with depressive symptoms, followed by poor self-reported health of the caregiver. Human service providers are advised to include depression screening tools at the time of assessment of Latino caregivers and to offer behavioral management interventions and self-care strategies.     

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.     

Attention during Visual Preference Tasks: Relation to Caregiving and Face Recognition

This research examined how caregiver experience (female primary caregiver or distributed caregiving with mom and dad) influenced 10‐, 14‐, and 16‐month‐olds’ visual preferences and attention toward internal facial features of female–male face pairs, and how these behaviors related to novelty preferences in a face recognition task and speed and accuracy on a visual search task. In the visual preference task, infants visually preferred male faces, regardless of caregiver experience. Despite similarities in visual preferences, infants’ attention toward females and males’ internal facial features was related for infants with distributed caregiving only. Infants’ performance across face processing tasks most often correlated for those with female primary caregivers. Results further our understanding of how infants with female primary caregivers display specialized processing of female faces, and how infants with distributed caregiving show similarities in their attention to female and male facial features.     

Greedy Spouse,Needy Parent: The Marital Dynamics of Gay,Lesbian, and Heterosexual Intergenerational Caregivers

It is well established that married heterosexual women do more intergenerational caregiving for aging parents and parents‐in‐law than married heterosexual men do. However, gay men and lesbian women's recent access to marriage presents new questions about the gendered marital dynamics of intergenerational caregiving. We use dyadic data with gay, lesbian, and heterosexual spouses to examine the marital dynamics of intergenerational caregivers. Results show that gay and lesbian spouses provided intensive time and emotional support for an intergenerational caregiver. In contrast, heterosexual women described their intergenerational caregiving as rarely supported and at times even undermined by their spouse. Dyadic data on heterosexual men corroborate women's accounts; heterosexual men rarely reported providing intergenerational caregiving, and thus heterosexual women rarely described providing spousal support. These findings provide new insight into the intermingled roles of “greedy” marriages and “needy” parents, wherein marital negotiations around caregiving vary by gender for gay, lesbian, and heterosexual marital dyads.     

Understanding the association between time spent caregiving and well-being among employed adults: testing a model of work–life fit and sense of community

This study examines factors associated with work–life fit and sense of geographic community as mediators of the negative association between caregiving demands and well-being among employed informal caregivers. Data were drawn from a larger project assessing well-being among residents of three mid-size cities in Ontario, Canada. A subsample was selected of informal caregivers who worked for pay for at least eight hours/week (n?=?276). Caregiving demands were measured by time spent caring for an adult who was a relative, friend, or neighbour. Well-being followed a holistic conceptualization advanced by the Canadian Index of Wellbeing. The more time spent caregiving, the lower participants’ well-being ratings were. This association was mediated by perceived time adequacy, income adequacy, and sense of community, such that the more time participants spent caregiving, the lower their ratings of these three resources. This explained the initial association of caregiving hours with reduced well-being. Enhanced well-being was more strongly associated with sense of community than any other factor, which supports the importance of the community domain in understanding well-being among employed caregivers and suggests its further testing with other population groups. Policy implications for employers and community organizations are provided.     

FEMALE CAREGIVERS’ REFLECTIONS ON ETHICAL DECISION-MAKING: THE INTERSECTION OF DOMESTIC VIOLENCE AND ELDER CARE

As our population ages, increasing numbers of social workers and other therapists will provide counseling to women who are caregivers of frail elders. These female caregivers often face complex ethical dilemmas in caring for a frail elder. Furthermore, these dilemmas are compounded by domestic violence in the caregiver/frail elder relationship initiated before the onset of caregiving. Illustrated with case examples, this article presents an ethical decision-making model based on an empowerment framework for helping practitioners work with caregivers who face difficult dilemmas impacted by domestic violence. Implications for strengthening clinical practice with these caregivers are discussed.     

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.     

“No Matter What I Do They Still Want Their Family”: Stressors for African American Grandparents and Other Relatives

Grandparents and other relatives increasingly assume the role of primary caregiver to minor children. This study interviewed family members caring for children whose parents were not available due to parental incarceration, other involvement in the criminal justice system, and substance abuse-related issues. Interviews with 25 African American women examined the impact of caregiving including stress and depression. Stress included caregiver issues related to finances, time allocation, care responsibilities, and concerns about the absent parent, as well as issues specific to the children related to school concerns, child behavior, and emotional problems. These stresses were examined along with caregiver depression scores using the Center for Epidemiological Studies Depression Scale, which indicated more depression related to caregiver illnesses, older caregivers, and care for older and a larger number of children. This study suggests that caring for these children is both challenging and stressful, and caregivers are at risk for depression and other mental health concerns. Health and service providers should carefully assess the needs of caregivers when determining the needs of families where children are under care of nonparental relatives. Family-based services are needed that include caregiver supports as well as support for children.