Chinese American Family Caregivers’ Perception of Program Use and Caregiver Stress

Caregiver programs provide specialized services and resources to reduce caregiver stress and improve family quality of life and health. Although there are resources and community services available, Chinese American family caregivers’ perceptions on caregiver programs and how specific services help to viably reduce their stress has yet to be examined. An in-depth interview was conducted with four Chinese American family caregivers in exploring their caregiving experiences and program service use; two of the caregivers were spouses and two were adult children. Content analysis revealed that their value of familial piety, and their need to ameliorate caregiver stress fueled their interest in new interventions to improve their quality of life and health. Spousal caregivers and adult children caregivers disclosed different needs due to caregiving, and adult children caregivers were less resistant to new interventions. The results of this study fill the knowledge gap on Chinese American family caregivers’ perception of caregiving in a cultural context as well as their needs. Suggestions for future research are to better understand the effectiveness of the specific services within caregiver programs that are effective in reducing caregiver stress among Chinese American family caregivers.     

Allowing Family to be Family: End-of-Life Care in Veterans Affairs Medical Foster Homes

The Medical Foster Home program is a unique long-term care program coordinated by the Veterans Health Administration. The program pairs Veterans with private, 24-hour a day community-based caregivers who often care for Veterans until the end of life. This qualitative study explored the experiences of care coordination for Medical Foster Home Veterans at the end of life with eight Veterans’ family members, five Medical Foster Home caregivers, and seven Veterans Health Administration Home-Based Primary Care team members. A case study, qualitative content analysis identified these themes addressing care coordination and impact of the Medical Foster Home model on those involved: (a) Medical Foster Home program supports Veterans’ families; (b) Medical Foster Home program supports the caregiver as family; (c) Veterans’ needs are met socially and culturally at the end of life; and (d) the changing needs of Veterans, families, and caregivers at Veterans’ end of life are addressed. Insights into how to best support Medical Foster Home caregivers caring for Veterans at the end of life were gained including the need for more and better respite options and how caregivers are compensated in the month of the Veteran’s death, as well as suggestions to navigate end-of-life care coordination with multiple stakeholders involved.     

Experiences of rural male caregivers of older adults with their informal support networks

More male caregivers are assuming primary caregiving roles for older adults with chronic health conditions. One of the main sources of support for many caregivers is the assistance that is provided by members of their informal support network. Little is known about the relationship between male caregivers and their informal support networks. This qualitative study examines the experience of male caregivers with their informal support networks, specifically looking at two phenomena: (1) Perceptions of the male caregivers about the willingness of their informal support networks to provide caregiving assistance and (2) Willingness of the male caregivers to ask their informal support networks for assistance. Twenty male caregivers were recruited across a rural Midwestern state. Each male caregiver engaged in two interviews that lasted between 60 and 120 minutes. Seven themes emerged from the data about the male caregivers experience with their informal support networks. Results from this study have implications for geriatric health professionals who work with male caregivers to obtain the necessary amount of caregiving assistance.     

Patterns of family service needs and caregiver–child relationships among families at risk of child welfare involvement

Caregivers at risk of involvement in the child welfare system report high levels of need for multiple types of services, and their children have high levels of mental health need. Caregivers from families with more service needs, as well as unmet needs, are less likely to be engaged with child welfare services and may have diminished capacity to care for their child. This study takes a family‐centered approach by using latent class analysis to identify patterns of both caregiver and child service needs among families at risk of child welfare involvement. Using data from the LONGSCAN consortium (N = 957), we identified 4 classes of service needs among child welfare‐involved families. We then examined differences between the 4 classes based on demographics, maltreatment histories, unmet service needs, and caregiver–child relationship. The caregivers were split fairly evenly among the 4 classes: low needs, medical needs, poverty support, and high needs. There were significant differences between classes on assessed variables, with higher levels of needs associated with diminished caregiver–child relationships.     

Response Agreement Rates Between Child Welfare–Involved Youth and Their Caregivers

ABSTRACT

Data were collected from 40 youth and 37 caregivers, which represented 57 distinct youth and 20 youth–caregiver dyads to measure the level of agreement between youth self-report and their caregivers on a variety of topics. Topics included: the youth's past placements, service use and needs, experiences in the child welfare system, and the youth's emotional problems and social behaviors. Results indicated high agreement between youth and caregiver proxy related to placement history, service use, the restrictiveness of the current environment, and community safety; results indicated low levels of agreement for youth emotional difficulties and prosocial behaviors. Qualitative data were used to further identify some of the differences noted. Overall, the findings support prior research that shows higher agreement within youth–caregiver dyads for objective measures as opposed to subjective and private ones. Implications for future research are discussed, and methodological challenges related to this study are identified.     

The Potential of Information Technology to Navigate Caregiving Systems: Perspectives from Dementia Caregivers

Technologies designed to support caregivers of adults with Alzheimer’s disease and related dementias (AD/RD) have been developing at an increasingly rapid pace. However, little remains known about caregivers’ perspectives on how technologies can and should help them navigate larger service systems they interact with to engage in caregiving. This study involved in-depth interviews and a beta test of an AD/RD caregiver app to learn more about how they currently use technologies and how potential technological features and functions can best meet their needs. Thematic findings suggest a conceptual model for designing AD/RD caregiver technologies. The findings suggest that eHealth and individual technologies may not fully meet the needs of caregivers as they navigate the larger systems within which they provide care. Findings highlight the need to develop technologies for caregivers that are effective, easy to use, and more widely disseminated – especially for caregivers from disadvantaged backgrounds.     

Unmet home care service needs of rural older adults with Alzheimer's disease: a perspective of informal caregivers

This study assessed unmet service needs of rural older adults with Alzheimer's disease (AD) and identified factors that were related to these needs. Data were collected from 109 informal caregivers of AD patients. Over half of the patients experienced unmet service needs in 1 or more areas of activities of daily functioning. Informal caregiver burden and patient's gender and functional status were significantly related to patients' unmet service needs. Patients' use of formal services was marginally related to their unmet service needs. To better address patients' service needs, a comprehensive needs assessment should be conducted with both patients and their caregivers.     

Restructuring Long-Term Care in Spain: The Impact of The Economic Crisis on Social Policies and Social Work Practice

ABSTRACT

Care needs of the aging population are increasing in Southern European countries. The purpose of this article is to explore the implications of meeting these needs while taking into account the recent economic crisis, which has deeply affected countries such as Spain. This study is part of a European project (ISCH COST Action IS1102) and is based mainly on qualitative information that focuses on in-depth interviews with social service workers (n = 19) who provide the service and program recipients or their caregivers (n = 14). In addition, two discussion groups were conducted with professionals (n = 9) and program volunteers (n = 5), as well as a workshop/discussion group (n = 28) with politicians, service providers, and participants. Six thematic premises were identified with differing views being highlighted relevant to the participants' roles in the program. Future research should explore social service strategies to deal with the increase in care needs as well as community-based responses.     

Unmet Home Care Service Needs of Rural Older Adults With Alzheimer's Disease: A Perspective of Informal Caregivers

This study assessed unmet service needs of rural older adults with Alzheimer's disease (AD) and identified factors that were related to these needs. Data were collected from 109 informal caregivers of AD patients. Over half of the patients experienced unmet service needs in 1 or more areas of activities of daily functioning. Informal caregiver burden and patient's gender and functional status were significantly related to patients' unmet service needs. Patients' use of formal services was marginally related to their unmet service needs. To better address patients' service needs, a comprehensive needs assessment should be conducted with both patients and their caregivers.     

Family Caregivers of the Elderly

Two groups of primary family caregivers were interviewed; one whose older relatives received assistance from an inhome chore services program, the other whose relatives had been terminated from service due to budget reductions. Both groups of caregivers were found to be actively involved in providing care to their older relatives. The assistance that caregivers provided was similar whether or not their relative received chore services. No significant differences were found in the type of tasks they provided nor in the amount or length of time they have provided care. The data suggest that there may be limits to the assistance that these caregivers can provide and that care of the elderly beyond such limitations needs to be supplied by other sources. Caregiving may be influenced both by the particular circumstances of the caregiver and the individual needs of the older relative. These findings support the notion that there is a need for shared responsibility between the family and government, based on an understanding of the tasks that family caregivers are best able to provide.     

A Cross-Sectional Examination of the Association Between Dyspnea and Distress as Experienced by Palliative Home Care Clients and Their Informal Caregivers

This study examined the association between dyspnea and distress as experienced by both palliative home care clients and their informal caregivers as a unit of care. Cross-sectional analysis was conducted using the interRAI Palliative Care Assessment database. Responses from 6,655 individual palliative home care clients across six regional jurisdictions in Ontario, Canada were included. This study found that clients experiencing dyspnea were more likely to show overall signs of distress; report one or more signs of self-reported distress; and be at risk for depression when compared to clients who do not experience dyspnea. Caregivers of clients experiencing dyspnea were more likely to exhibit distress than caregivers of clients not reporting dyspnea. When indicators of caregiver distress and client distress were combined, 53% of the caregiver-client units exhibited distress. Social work practitioners should include a focus on distress within the care unit as a priority when care planning to meet the needs of persons nearing the end of life. Members of the care team should consider available treatment and management options tailored to meet both the client and their informal caregiver’s needs.     

Eldercare and employed caregivers: a public/private responsibility?

The National Alliance for Caregiving (NAC) and the American Association of Retired Persons (AARP, 2004) have reported that 21% of the U.S. population provides family caregiving services to someone over 18 years old. Seventy-nine percent (79%) of these caregivers provide care for someone aged 50 or older. The majority of caregivers work full or part-time, and nearly two-thirds of employed caregivers make work-related adjustments in order to provide care (NAC & AARP, 2004). This article examines eldercare issues of employed caregivers, identifies current public and private policies addressing caregiver needs, presents a process model to assist organizations in creating family-friendly workplaces, and suggests social work roles that support family caregiving.     

A stress process model of family caregiver service utilization: factors associated with respite and counseling service use

This study examines whether caregivers' differential utilization of respite and counseling support services is associated with different situational stress processes. A multinomial regression analysis was conducted to compare respite users, counseling users, and those who used neither service, using data collected on a statewide random sample of 1,643 California caregivers providing assistance to individuals aged 50 or older. Compared with caregivers who used neither service, respite service users were more likely to have demanding care situations giving rise to physical symptoms of stress, and were more likely to use community services for the care recipient to augment their care. In contrast, counseling service users were more likely to be managing the meaning of their care situation by seeking out information about services and talking with a confidant about their situation, while coping with both emotional and physical symptoms of stress. Tailoring caregiver interventions to meet the support needs and coping strategies stemming from diverse caregiving situations and caregiver characteristics may increase the likelihood that those interventions will be effective in alleviating or preventing deleterious secondary stress frequently experienced by family caregivers.     

Individually-Tailored Support for Ethnically-Diverse Caregivers: Enhancing Our Understanding of What Is Needed and What Works

Family caregivers play a crucial role in maintaining older adults in the community, often at great cost to themselves. We discuss a program serving ethnically-diverse caregivers in New York, offering, on average, 11 case-management hr per client. Participants reported statistically significantly reduced stress and burden. Respite was the most requested service, belying an assumption underlying policies and services that families, particularly among minority populations, can and will care for their older members. Thus, services must be carefully tailored to meet actual caregiver needs, including provision of alternatives that reduce caregiver involvement. We discuss practice and policy implications.     

Establishing Empirically-Informed Practice With Caregivers: Findings From the CARES Program

There is increasing interest in delivering efficacious interventions to caregivers. This study reports on the processes and findings from a modified approach of the Wraparound System of Care. The practice model is implemented over 4 phases and is based on 3 theoretical constructs and 10 principles. The evaluation utilized treatment fidelity measures and employed a quasi-experimental pretest/posttest design to examine caregiver outcomes (N = 120). Findings suggest significant improvement among caregivers’ self-reported health, life satisfaction, well-being, and quality of life, as well as a reduction in caregiver risk and burden. Delineation of the processes used in the model are presented.     

Primary Caregivers and Chinese Elders’ Demand on Community Services

Abstract

The most influential model explaining the elderly’s service use is Andersen and Newman's model. But the applicability of the model on elders’ demand on community services has not been tested, especially in developing countries such as China. This research tested the applicability of the model by studying how primary caregiver relations to the elderly influence Chinese community-dwelling elders’ demand on community services. With a total of 2,124 respondents aged 65 and older who reported primary caregivers, six primary caregiver relations were examined: son, spouse, daughter, daughter-in-law, unmarried son and daughter, and other. Data came from the 2014 wave of the Chinese Longitudinal Healthy Longevity Survey (CLHLS). Results indicated that: (1) Elders cared for by daughters-in-law showed a significantly stronger tendency of expecting community services than elders cared for by other caregivers among both rural and urban areas. (2) Elders were least likely to expect community services in two cases: urban elders taken care of by daughters and rural elders whose primary caregivers were unmarried sons and daughters. Since Chinese elders cared for by different caregivers tended to seek community care in different manners, future research may study how suitable community service programs can be developed to well meet the needs of various elderly groups.     

Exploring how workplace and social policies relate to caregivers’ financial strain

Informal caregiving is a critical component of the US long-term care system, but can have significant negative impacts on caregiver employment, finances, and well-being. An online survey of Colorado caregivers was piloted in 2016–17 to explore whether workplace and social policies such as access to paid family leave and public health insurance can buffer the negative financial impacts of caregiving and help caregivers to remain in the workforce. Using standardized measures, the survey assessed caregivers’ employment and financial status, well-being (physical and mental health, caregiver strain, benefits of caregiving), access to workplace supports, and covariates (e.g., caregiver demographics, health, social support, and service utilization). Ninety-five caregivers, recruited through community agency partners, completed the survey. Respondents were predominately female (89%), middle-aged (M = 57), non-Hispanic White (64%) or Latino/a (22%), and caring for a parent (40%) or spouse (30%) for over one year. Half (51%) reported working full- or part-time jobs, while 16.4% had stopped working because of caregiving. In multivariate regression modeling, predictors of financial strain included the care recipients’ financial strain and the caregiver’s reduction or ceasing of work. Medicare may be protective to minimize caregivers’ need to reduce or cease work. Implications for caregivers’ ability to stay engaged in the workforce and prepare for their own retirement are explored.     

Caregiver involvement in behavioural health services in the context of child welfare service referrals: a qualitative study

Human service agencies serve a growing number of adults with behavioural health needs. Despite these agencies' key role in identifying need and facilitating services, many individuals do not receive care or end services prematurely. Few studies have explored the experiences of families referred to behavioural health services by such agencies or the extent to which families' perceptions of service need align with those of treatment providers and frontline workers. This study presents findings from a qualitative study of caregivers involved with child welfare agencies who were referred to behavioural health services. Researchers reviewed agencies' case records and conducted in‐depth interviews with 16 caregivers, 9 child welfare caseworkers and 12 behavioural health treatment counsellors. Findings suggest that when deciding to engage in services, caregivers weigh not only their individual and family behavioural health needs but also potential agency intervention, including loss of child custody. Many professionals reported that involvement with a child welfare agency hindered the caregiver's disclosure of behavioural healthcare needs. Implications for managers and practitioners are discussed.