Availability of caregiver support services: implications for implementation of the National Family Caregiver Support Program

This study examines the scope and range of existing resources for family caregivers from the perspective of the Area Agencies on Aging (AAAs), which are charged with implementing Title III-E of the reauthorized Older Americans Act. California is used as a case example because of its substantial experience in providing caregiver support services. In particular, we examine the extent and adequacy of resources available in California corresponding to each of the five Title III-E service areas, utilizing data from AAAArea Plans, a follow-up survey of AAAs, and an Internet search. AAAs identified more than 276 providers of caregiver support services, and our Internet search identified another 195. Nearly two-thirds of these programs offer access to respite care, while other support services (e.g., counseling, training, support groups) are less often available. Service gaps most frequently identified included culturally and linguistically appropriate caregiver services, transportation, respite care, financial assistance, and services in rural areas. These findings suggest the need for enhanced efforts to improve the service network for supporting family caregivers, as states implement the National Family Caregiver Support Program.     

Family and Friends as Respite Providers

Abstract

Consumer-directed service options in home- and community-based care are increasingly available to adults with chronic conditions and cognitive impairments and to their family caregivers. Few studies, however, examine the experience of family caregivers who, when given a choice of providers of respite assistance (i.e., relief from the stress of providing constant care), prefer to hire family or friends rather than service providers. This study describes the in-home respite experience of family caregivers served by California's Caregiver Resource Centers “direct-pay” program who hire family or friends (n = 39) or service providers (n = 77) to provide in-home respite assistance. Findings revealed similarities between the two groups with few exceptions: caregivers who hired family or friends reported poorer physical health, were slightly more satisfied with the respite assistance, and received more hours of respite at a lower unit cost. These findings lend support to consumer-directed respite service options where family caregivers are given flexible alternatives that may act to remove barriers to respite service availability and use.     

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.     

Military Caregivers

Military caregivers provide essential services for their veteran or military service members who have serious injuries or illness. Of the estimated 39.8 million Americans who provide care for an adult, 1.1 million care for a post 9/11 veteran or service member. Caregivers may experience greater physical or mental health concerns including stress, depression and/or chronic illness, and have greater financial burden than their non-caregiving counterparts. Policy shifts such as the Caregivers and Veterans Omnibus Health Services Act of 2010 (2018) have created and expanded programs to support caregivers. Practitioners working with injured or ill military service members or veterans and their families should include a comprehensive biopsychosocial assessment of the whole family, utilizing several interventions, such as support groups, peer support, psychoeducational programs, training, individual and family counseling, and/or respite care services, to improve family function and reduce caregiver burden.     

Family and friends as respite providers

Consumer-directed service options in home- and community- based care are increasingly available to adults with chronic conditions and cognitive impairments and to their family caregivers. Few studies, however, examine the experience of family caregivers who, when given a choice of providers of respite assistance (i.e., relief from the stress of providing constant care), prefer to hire family or friends rather than service providers. This study describes the in-home respite experience of family caregivers served by California's Caregiver Resource Centers "direct-pay" program who hire family or friends (n = 39) or service providers (n = 77) to provide in-home respite assistance. Findings revealed similarities between the two groups with few exceptions: caregivers who hired family or friends reported poorer physical health, were slightly more satisfied with the respite assistance, and received more hours of respite at a lower unit cost. These findings lend support to consumer-directed respite service options where family caregivers are given flexible alternatives that may act to remove barriers to respite service availability and use.     

Kinship care and service utilization: A review of predisposing,enabling, and need factors

Research has shown that relative caregivers are less likely to use formal supports and services than non-relative foster parents. However, less is known about factors influencing kinship caregivers' help-seeking behaviors and service use. This systematic review identified research studies examining factors associated with service use among kinship caregivers using key search terms in five computerized bibliographic databases and four journals. The search identified 337 potentially relevant studies. After screening and study eligibility assessments, a final sample of 13 studies was reviewed. Findings suggested that although children and their kinship caregivers were clearly in need of services, service use was low. Results suggested a need for more rigorous research designs and that the following factors may influence service use: child behavioral problems, caregiver mental health status, resources, provider characteristics, caregiver perceived need, and social support. More research examining help-seeking behaviors, perceptions of formal services, and effectiveness of kinship caregiver services in relation to child outcomes is needed to improve the wellbeing of kinship families in the child welfare system.     

Spousal caregiving when the adult day services center is closed.

Of those spousal caregivers who identified a time when they most needed assistance, morning or afternoon time periods appeared to be most problematic. Spousal caregivers who reported receiving respite time on the weekends identified adult children as the informal support person most often available. However, more than half of the caregivers reported having no respite time during the weekend. Differences in the ways spousal caregivers spent their respite time on the weekends, if available, varied by gender, length of tenure as a caregiver, and age.     

Use of the Internet by Informal Caregivers Assisting People with Multiple Sclerosis

The Internet is used to help informal caregivers provide assistance to people with chronic illness and disability. We identified factors associated with Internet use by informal caregivers assisting people with multiple sclerosis (MS) using a logistic regression model. Duration of MS in the person receiving care and caregiver age predicted lower Internet use. More hours per week providing care and higher caregiver educational level increased odds of Internet use. The Internet can be a low-cost service delivery option to provide education and support to caregivers assisting people with MS.     

Factors Associated With Caregivers’ Use of Support Services and Caregivers’ Nonuse of Services Sought

Informal caregivers may face barriers accessing services like respite care, training, and support groups. Using multinomial logistic regression, I modeled caregivers’ probability of using all services sought (“all services used”) and nonuse of any services sought (“any unused services”) as a function of caregiver and care-recipient characteristics. Care-recipient health and function, especially dementia and need for medical task assistance, were associated with all services used and any unused services, and any unused services were more likely among adult children caring for their parents, caregivers of Black and Hispanic older adults, caregivers providing intensive care, caregivers living in metropolitan areas, and residents of states that spend more on increasing access to caregiver services under the National Family Caregiver Support Program. Regularly scheduled caregiving was associated with higher likelihood of all services used, but not with any unused services. Steps should be taken to increase access for caregivers who provide intensive care, care to dementia patients, or assistance with medical tasks and for Hispanic families.     

Respite reconsidered: A typology of meanings based on the caregiver's point of view

Respite has been de facto conceptualized as a service rather than an outcome. In this study, the meaning of respite was determined from the perspective of caregivers. The first phase of the project involved in-depth interviews and a focus group. The second phase included a random sample of caregivers in Victoria, BC, Canada screened through household residence telephone numbers. Two hundred ninety-four caregivers were interviewed face-to-face, utilizing both structured and open-ended questions asking caregivers about the meaning of respite to them. Six distinct themes emerged from the qualitative and more structured interviews. Categories included: stolen moments, relief, physical/mental stimulus, connections, minimizing its importance, and angst-free care receivers. This study recommends that policymakers and service providers redefine respite as an outcome rather than a service, taking caregivers' experiences into account. Over 60% of the caregivers defined a break in ways that policy makers, professionals, and researchers would not. Importantly, meanings did not vary by gender or class (as well as other demographic variables such as age), caregiver, care receiver, or social support variables.     

Rural Area Agencies on aging: An overview of activities and policy issues

This article presents an overview of the nature and service activities of rural Area Agencies (AAAs) with data from a recently completed national survey. Compared to their urban counterparts rural AAAs serve much larger, more sparsely populated areas with poorer and older elderly populations; have much smaller budgets and staffs; and support fewer services. This leads to a clear rural disadvantage in resources and services for the elderly. Policy makers need to examine and address factors identified as associated with this rural-urban inequity including SUA intrastate funding formulas, “rural” service models and training needs, and regulations regarding direct service provision. Important research and policy questions in need of further study are also identified.     

Sense of Need for Financial Support and Respite Services among Informal Caregivers of Older Americans

ABSTRACT

Financial support and respite services are two of the most frequently reported types of help that caregivers of older adults need. Using an expanded health behavioral model, this study examined the effects of predisposing, enabling, and needs factors on caregivers' sense of need for these two types help. Data were drawn from the 1999 National Long-Term Care Survey and included 1,058 caregiving dyads in the community. The results indicated that caregiver-related factors more than care recipient–related factors affected caregivers' sense of need to seek both types of help. The findings direct to two important implications for long-term care policy for and practice with older adults: improvement of service for caregivers and service delivery systems.     

Preliminary experiences of the states in implementing the National Family Caregiver Support Program: a 50-state study

Despite increased attention to policy choices to support family and informal caregivers, relatively little is known about states' experiences in providing caregiver support services. This article reports on the first nationwide survey of all 50 states and the District of Columbia in providing caregiver services since the passage of the National Family Caregiver Support Program. State program administrators reported that their program differs from other home and community-based services because of the explicit focus on the family or informal caregiver. Results suggest that despite an increasing availability of caregiver supports in all 50 states, there is also a great unevenness in services and service options for family caregivers across the states and within states.     

“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.     

The Impact of Formal and Informal Respite Care on Foster,Adoptive, and Kinship Parents Caring for Children Involved in the Child Welfare System

This paper reports the results of a quantitative 42-item survey that explored foster, adoptive, and kinship parents’ (N = 160) utilization of different types of respite services (formal, informal, and a mixture of formal and informal), as well as their impressions of the impact of respite care on aspects of their lives related to family cohesion and stability, caring for their children, and their personal wellbeing. An exploratory cross-sectional, survey design was used to assess both the formal and informal respite care experiences of the foster, adoptive, and kinship caregivers. Two-tailed Fisher’s exact tests were used to examine the relationship between the type of respite received and caregivers’ respite experiences. Findings indicated that parent experiences differed depending on the type of respite services they received. Specifically, parents who used a mixture of formal and informal respite reported positive experiences related to respite more frequently than the other two types of respite groups, while those who received only informal respite reported less benefit than others. Parents who used formal respite (either alone or mixed with informal respite) reported greater stress reduction. The greatest increase in family stability was reported by parents who received a mix of informal and formal respite. While this study revealed clear benefits for families to using both informal and formal respite services, the findings suggest that formal respite care was helpful to parents regardless of whether used alone or in combination with informal care.     

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.     

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.     

Facilitators and barriers to family engagement and retention of young children in mental health care: A qualitative study of caregivers’ perspectives

This study examines facilitators and barriers that influence family engagement and retention of children in mental healthcare from the parent and caregiver perspective. Researchers recruited and interviewed parents and caregivers (n=18) from urban community health and early childcare centers. The study team analyzed the data and identified barriers to retention in care, including stigma, lack of integrated health care services,and a shortage of providers with the expertise in early childhood mental health care. Social workers, case managers, parent peers, and community support groups helped facilitate parent and caregiver engagement and retention of children in care. Education,community support programs, and integrated healthcare systems would improve access to quality early childhood mental health care.