Comprehensive Family Caregiver Support and Caregiver Well-Being: Preliminary Evidence From a Pre-post-survey Study With a Non-equivalent Control Group

Abstract

Introduction: In May 2010, the Caregivers and Veterans Omnibus Health Services Act of 2010, was signed into law in the United States, establishing the Program of Comprehensive Assistance for Family Caregivers (PCAFC) provided through the VA Caregiver Support Program (CSP). Prior to this program, over half of family caregivers reported being untrained for the tasks they needed to provide. The training through PCAFC represents the largest effort to train family caregivers in the U.S., and the features of the program, specifically a monthly stipend to caregivers and access to a Caregiver Support Coordinator at each VA medical center nationally, make it the most comprehensive caregiver support program ever enacted in the U.S. Methods: The purpose of this study is to examine the association between PCAFC participation and caregiver well-being following enrollment, comparing participating PCAFC caregivers to caregivers who applied to but were not approved for PCAFC participation (non-participants). Well-being is defined using three diverse but related outcomes: depressive symptoms, perceived financial strain, and perceived quality of the Veteran's health care. Additional well-being measures also examined include the Zarit Burden Inventory and positive aspects of caregiving. Results: The survey sample comprised of 92 caregivers approved for PCAFC and 66 caregivers not approved. The mean age of responding caregivers was 45; over 90% of caregivers were female; and over 80% of caregivers were married in both groups. We find promising trends in well-being associated with PCAFC participation. First, the perception of financial strain declined among participants compared to non-participants. Second, while depressive symptoms did not improve for the PCAFC caregivers, depressive symptoms increased among non-participants. Third, perceived quality of the Veteran's VA healthcare was no different between participants and non-participants. However, the 158 returned surveys reflect only a 5% response rate; hence this evidence is preliminary. Conclusion: Despite cautioning that results be interpreted as preliminary, this study provides unique descriptive information about young caregivers of U.S. post-9/11 Veterans, and offers a first step in filling the evidence gap about how comprehensive caregiver support in the U.S. may affect caregiver well-being. These preliminary findings should be explored and validated in a larger sample.

Unhealthy family functioning is associated with health-related quality of life among military spouse caregivers.

“…However, in the first six years following the start of the program, only 33,000 caregivers have participated in the program, which represents only .6% of all caregivers of veterans. This may be partially related to some requirements around level of veteran disability (Smith et al, 2019).…”

“…However, in the first six years following the start of the program, only 33,000 caregivers have participated in the program, which represents only .6% of all caregivers of veterans. This may be partially related to some requirements around level of veteran disability (Smith et al, 2019). Given the increasing evidence of the significant burden of the caregiving role across a variety of domains, more efforts should be made to support those in this important role.…”

Medicaid Expansion and the Mental Health of Spousal Caregivers

“…Thus, there may be differential effects on mental health based on intensity of caregiving provided. Smith et al (2019) provide preliminary evidence that the PCAFC program reduced the perception of financial burden and controlled the depressive symptoms among treatment group participants. Finally, caregiver supports could spill over to care recipient wellbeing.…”

A qualitative study of the interaction experiences between family caregivers and community nurses for disabled elderly people at home

“…Studies have reported the importance of the quality of social interactions between family and formal care providers in residential care settings, and less is known about such relationships in community-based care settings in which the majority of disabled older adults [37,38]. We conducted semi-structured interviews with community nurses and family caregivers of disabled elderly to collect information regarding their experiences and attitudes toward interaction.…”