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.

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Citation

Published Version (Please cite this version)

10.3389/fpubh.2019.00122

Publication Info

Smith, Valerie A, Jennifer Lindquist, Katherine EM Miller, Megan Shepherd-Banigan, Maren Olsen, Margaret Campbell-Kotler, Jennifer Henius, Margaret Kabat, et al. (2019). Comprehensive Family Caregiver Support and Caregiver Well-Being: Preliminary Evidence From a Pre-post-survey Study With a Non-equivalent Control Group. Frontiers in public health, 7(May). p. 122. 10.3389/fpubh.2019.00122 Retrieved from https://hdl.handle.net/10161/26152.

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Scholars@Duke

Smith

Valerie A. Smith

Associate Professor in Population Health Sciences

Valerie A. Smith, DrPH, is an Associate Professor in the Duke University Department of Population Health Sciences and Senior Research Director of the Biostatistics Core at the Durham Veterans Affairs Medical Center's Center of Innovation. Her methodological research interests include: methods for semicontinuous and zero-inflated data, economic modeling methods, causal inference methods, observational study design, and longitudinal data analysis. Her current methodological research has focused on the development of marginalized models for semicontinuous data.

Dr. Smith works largely in collaboration with a multidisciplinary team of researchers, with a focus on health policy interventions, health care utilization and expenditure patterns, program and policy evaluation, obesity and weight loss, bariatric surgery evaluation, and family caregiver supportive services.

Areas of expertise: Biostatistics, Health Services Research, Health Economics, and Health Policy

Shepherd-Banigan

Megan E Shepherd-Banigan

Assistant Professor in Population Health Sciences

Dr. Megan Shepherd-Banigan designs research studies to improve the health, emotional well-being, and social functioning of adults with mental and physical disabilities. Her methods combine empirical approaches that address methodologically challenging research questions in health systems and policy research. Dr. Shepherd-Banigan uses large survey and administrative datasets to evaluate the impact of policies that support family members to care for adults with disabilities.  

Dr. Shepherd-Banigan won a VA Career Development Award from 2019-2024 and is studying ways to strengthen family support for veterans under-going traumatic stress treatment. She also leads a project that surveys family caregivers of Vietnam-era veterans who might be eligible for expanded support services under the VA Mission Act to evaluate program impacts. As co-investigator on an NIA-funded CARE IDEAS study (Terri Wetle, PI) , she is investigating end-of-life-care planning and well-being among dementia care dyads.  Finally, Dr. Shepherd-Banigan is leading a project in partnership with the Rosalynn Carter Institute for Caregivers to identify creative empirically-based approaches to support family caregivers. 



Olsen

Maren Karine Olsen

Professor of Biostatistics & Bioinformatics

Health services research, longitudinal data methods, missing data methods


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