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.     

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.     

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.     

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.     

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.     

Informal Care Intensity and Caregiver Drug Utilization

Providing informal care has negative health consequences for informal caregivers. If these health consequences increase drug utilization among caregivers, estimates of health care savings from informal care—mainly realized through reductions in utilization among care recipients—should consider the increased drug costs incurred by informal caregivers. This paper evaluates whether more intensive informal caregivers have higher drug utilization than less intensive caregivers, controlling for initial health status and other factors. We find that informal care intensity is associated with higher drug consumption. An increase of 10% of total informal care per day is associated with a 0.7% increase in drugs. The small magnitudes indicate that, in this application, it is not important to consider caregiver drug utilization when quantifying the net savings to the health care system of informal care. For individual caregivers, such as those who take multiple drugs per month and/or have no drug coverage, the increase in drug utilization associated with intensive caregiving is likely to be costly.     

Analysis of HIV Caregivers in South Africa: A South African Depression and Anxiety Group

ABSTRACT

The severity of the HIV/AIDS epidemic in South Africa is well documented. However, little is known regarding the well-being of caregivers of persons with HIV/AIDS in South Africa. This study sought to evaluate characteristics, similarities and differences between groups of HIV caregivers in rural, semi-rural, and urban areas of South Africa. Interesting trends were noticed in the areas of suicidality, alcohol abuse, and intimate trauma. Findings indicate a substantial need for further study in the area of suicidality, denial of or lack of desire to know HIV status and the accompanying diagnostic stigma, and the need for a support network within lay caregivers.     

From Acute Palliation to Chronic Care: Using the Narratives of Two Gay Caregivers to Explore Experiences of Providing HIV Support Across Sociohistorical Contexts

Despite the longstanding shift in conceptualizing HIV/AIDS as a site of chronic care, versus one of acute palliation, few attempts have been made to examine caregiving in the context of this change. This study constitutes a preliminary attempt at exploring the evolving nature of HIV/AIDS caregiving among sexual minorities, primarily by comparing the narratives of two partnered caregivers of HIV-positive gay men whose stories are located in disparate sociohistorical contexts. Whereas one caregiver provided support during an era in which HIV/AIDS was primarily conceptualized as acutely life-limiting, the other did so in the contemporary period of chronic HIV care. Although similarities are noted across the stories, distinctions are also apparent in how the caregivers encounter expressions of homophobia and HIV stigma, and negotiate these realities distinctly as a function of sociohistorical context. In particular, despite the salience of these systemic barriers across the two narratives, these expressions of marginalization appear to occur more routinely and indefinitely in the context of chronic care. This article concludes with implications of the study's findings on theory, research, policy, and practice.     

Racial and Ethnic Differences in Family Caregiving in California

Abstract

Family caregivers are the main source of long-term care for older persons in the United States. At the same time, cultural values and beliefs shape decisions surrounding who provides care and whether families use formal support interventions to assist the caregiver. The current article examines how the family caregiving experience differs among racial and ethnic groups in terms of caregiver characteristics, service utilization, caregiver strain, and coping mechanisms. Telephone interviews were conducted in English and Spanish with a random sample of 1,643 respondents in California who provide care to someone age 50 or over. Bivariate analyses showed evidence of ethnic differences in the demographic characteristics of caregivers, intensity of care provided, caregiver health, level of financial strain, religious service attendance, formal service utilization and barriers to formal services. Odds ratios showed that White and African American caregivers were about two times as likely to use formal caregiver services as were Asian/Native Hawaiian/Pacific Islander and Latina American caregivers. Implied by these findings is the need for further understanding of caregiver service needs among diverse racial and ethnic groups.     

Dementia Problem Behavior and the Production of Informal Caregiving Services

Informal caregivers of individuals with Alzheimer's disease spend a considerable amount of time providing care. In this paper, we use Grossman's health production and Becker's time allocation models to develop a model of informal care provision to elderly dementia patients. In our model, time inputs produce caregiving services, which provides utility to the caregiver, but reduces leisure. We assume that time is less productive of services on the margin as the disease progresses. In this framework, an increase in patients' disease severity does not necessarily increase informal caregiver time input. The cost of formal care establishes a reservation price for informal caregiving. When the costs of informal caregiving rise above this reservation level, the patient is institutionalized. We test empirically the effect of deterioration in the patients' condition, proxied by both disease severity and dementia problem behavior, on informal caregiving time. We find that dementia-related problem behaviors and functional limitations significantly increase inputs of informal caregiving time. Patients' problem behavior exerts a modifying effect on functional limitations, and patients' comorbidities have no effect on informal caregiving time.     

Perceived overload as a predictor of physical strain among spousal and adult child caregivers of frail elders in the community

ABSTRACT

Family caregivers of frail elders can experience physical strain associated with caregiving. Identifying correlates of caregiver strain can provide an important impetus for tackling the causes and providing effective interventions. Utilizing data from the 1999 National Long-Term Care Survey, the current study examined correlates of caregiver physical strain among 956 family caregivers, using the stress process model. As multiple regression analyses indicated, the caregiver’s perceived overload predicted greater strain for both spousal and adult child caregivers. For both groups, common correlates of physical strain were caregiving demands, the caregiver’s perceived overload, and limitations placed on the caregiver’s life. The results demonstrate that the family relationship of the caregiver (spouse or adult child) leads to variations and dynamics in caregiver strains, due to qualitatively different relationships.     

Dance of the Dedicated Bottom

Abstract

LGBT caregiving for midlife and older adults facing chronic illness or disability as well as the development and evaluation of interventions targeting LGBT caregivers remains fundamentally unexplored. Caregivers regardless of their sexual orientation or gender identity often juggle multiple roles and responsibilities leading to increased stress and distress. However, largely due to discrimination and discriminatory policies, many LGBT caregivers face barriers at multiple levels of service provision that can exacerbate stress and negatively impact caregiver and care recipient quality of life. This article highlights many of these obstacles and provides examples of intervention strategies designed to assist LGBT caregivers ranging from interventions aimed at the individual and interpersonal levels of service provision to changes needed at the social policy level. As an example of an individual or interpersonal level of intervention designed to assist LGBT caregivers, the SURE 2 framework is presented and more thoroughly discussed. Given the diversity of the LGBT community, the article ends with ways to extend or adapt SURE 2 as well as suggesting that the time has come to develop and test a variety of interventions for LGBT caregivers.     

Chapter 13. New Challenge to Inner-City Caregiving

SUMMARY

This article discusses how new or emerging city forms present fresh challenges and opportunities for caregiving agencies and institutions. It describes how tapping the resources and assets of inner cities can revitalize the capacity of the community. The way in which religious institutions, traditional social service agencies, and informal caregivers can work together to provide care is explored.     

A Critical Review of Family Caregiving of Mental Health Consumers in Hong Kong

ABSTRACT

This paper is a critical review on the family caregiving of mental health consumers in Hong Kong. The writer has a brief review on related studies of family caregiving of mental health consumers. In comparing with those in the U.K. and the U.S.A., family caregivers of mental health consumers in Hong Kong are lonely, stigmatized and unsupported by mental health services and members in the community.     

Ethnic Variations in Dementia Caregiving Experiences

Abstract

The proportion of minority elders with dementia in the United States is projected to rise substantially. This study elicited perceptions of the caregiving experience from informal caregivers of persons with dementia, across different ethnicities. Six focus groups with 47 dementia caregivers of African-American, Chinese-American, Euro-American, and Hispanic-American ethnicities were conducted. Caregiving roles, concern about the person with dementia, and unmet information and resource needs were expressed similarly. However, perspectives differed across ethnic groups on stigma surrounding dementia, benefits of caregiving, spirituality/religion to ease caregiving burden, and language barriers and discrimination. Findings suggest that interventions to reduce disparities in dementia care quality need to address ethnic variations in caregiving experiences.     

Social Networks,Migration, and Care in Tanzania

This paper explores the impacts of the HIV/AIDS epidemic on children and families in northern Tanzania using the concept of social resilience.1 1. This paper is based on a presentation entitled, “Social Networks, Migration and Care in Tanzania: Supporting Women, Children and Young People's Resilience,” prepared for the 2nd African Conference on the Social Aspects of HIV/AIDS Research, International Convention Centre, Cape Town, May 9–12, 2004, organized by the Human Sciences Research Council, South Africa (see: www.sahara.org.za). View all notes The study is based on the findings of child-focused research with street children and children and families from HIV/AIDS-affected households. The paper illustrates the coping strategies that children and young people, and parents and caregivers adopt at the household level. In particular, it examines how the burden of care affects different generations of women and highlights their resilience, together with the importance of social networks and the fluidity of movement between rural and urban areas. The research suggests that migrating to urban areas to seek a living in the informal sector represents a survival strategy adopted by some children and young people orphaned by AIDS when their families and communities are unable or unwilling to support them. The paper concludes by exploring parents’, caregivers’, children's, and young people's views on the forms of social support that would promote their resilience and thereby help to mitigate the impacts of the epidemic at the household level.     

Training for Abusive Caregivers:

This article proposes a model for elder abuse intervention based on a recently implemented caregiver training program. Caregivers at-risk for abuse were offered traiing through mental health centers on biopsychocosil issues in aging, problem-solving, stress and anger management, and utilization of community resources. Participants were compared with similar caregivers on measures of psychosocial well-being to examine the efficacy of training. Participants experienced some reduction in symptoms of psychological distress and caregiving burden over time while symptoms worsened or remained unchanged for non-participants. Suggestions are made for utilizing this approach in cases of founded abuse.     

Making the best of it: Themes of meaning among informal caregivers to the elderly

Interviews with 48 informal caregivers to the elderly indicate that the concept of caregiver meaning can help explain why many caregivers persevere in their roles despite the stress involved. Several general themes of caregiver meaning were found: Gratification and Satisfaction with the caregiving role, a sense of Family Responsibility/Reciprocity, the Friendship and Company which caregiving provided, and a commitment to Doing What Needs to Be Done. Less frequently utilized themes were: having a Caring Personality, and experiencing Personal Growth and an Improved Relationship with the elder. These themes echo the complexity of caregiver meaning reported in the literature to date, and two related interpretations of that complexity are posited: that meaning has both an emotional and a cognitive component, and that there are two different dynamics operating—searching for meaning and finding meaning.     

A mixed methods inquiry of caregivers of U.S. veterans with sustained “invisible” injuries from Iraq/Afghanistan

ABSTRACT

An exploratory study of caregiver burden associated with family caregivers enrolled in the VA Caregiver Support Program who assist veterans with serious invisible injuries sustained post September 11, 2001. A mixed methods analysis was completed with a retroactive chart review of already collected data (172 participants) in addition to a phenomenological query of 16 participants. Results: T-tests resulted in a significantly higher caregiver burden score with caregivers who had children in the home (M = 6.84; SD = 3.21) versus those who did not (M = 5.57; SD = 2.75), t (160) = ?2.36, p = .02. An ANOVA across caregiver role (parent, spouse, significant other and other) and the Zarit Burden Inventory (ZBI) resulted in a significant difference (F [3, 159] = 1.59, p < .01, with spousal caregivers having a significantly higher ZBI score (M = 6.83; SD = 3.10) than parental caregivers (M = 4.46; SD = 2.70). The phenomenological research resulted in 22 major themes (family adjustment, subjective demands, coping techniques, social support, VA/DOD, self-care, intimacy, role strain, financial resources, life course, obligation, rewards, isolation/loss of self, reciprocity, stigma, community resources, spiritual support, tools, hope, uncertainty, guilt, leash syndrome) which supported quantitative findings. Conclusions: Caregivers and their families had a difficult time adjusting post injury. Caregivers relied heavily on their own coping mechanisms to adapt to their new role and did not find social support to be helpful with caregiving. Spousal caregivers and caregivers with children in the home had more difficulty adjusting when compared with parental caregivers.     

Foreign Domestic Workers and Eldercare in Singapore: Who Hires Them?

In Singapore, policy makers expect families to remain actively involved in the care of their frail older relatives, as manifestly expressed in its Many Helping Hands approach to long-term care. To enable families to fulfill this expectation, the government has enacted policies that encourage the hiring of foreign domestic workers (FDWs) to complement or supplement informal caregiving efforts. Using the Andersen Behavioral Model, we were interested in identifying caregiver and care receiver characteristics that might predict the hiring of FDWs. With data from a convenience sample of 488 informal caregivers, we ran logistic regression regressing the hiring of an FDW on various predisposing, enabling, and need factors. Of interest, enabling factors such as household income, housing type, and educational level were predictive of hiring an FDW in the home. Only one need factor, time spent in caregiving, was predictive of the increased likelihood to hire an FDW. Policies that encourage the marketization of care are likely to favor those with financial means and inadvertently ignore the caregiving burdens of lower income families. In addition, we suggest research and policies to ensure the well-being and protection of FDWs who have become a key component of the long-term care policy and practice in Singapore.