Self-Directed Home- and Community-Based Services Improve Outcomes for Family Caregivers: A Systematic Review

Author:

Kueakomoldej Supakorn1,Dinelli Emily1,Beestrum Molly2,Sadler Tonie3,Caldwell Joseph4,McHugh Megan5,Heinemann Allen W6

Affiliation:

1. Center for Education in Health Sciences, Feinberg School of Medicine, Northwestern University , Chicago, Illinois , USA

2. Research & Information Services, Feinberg School of Medicine, Northwestern University , Chicago, Illinois , USA

3. Individuals with Disabilities Hub, American Institutes for Research , Arlington, Virginia , USA

4. Community Living Policy Center, Lurie Institute for Disability Policy, Heller School for Social Policy & Management, Brandeis University , Waltham, Massachusetts , USA

5. Department of Emergency Medicine, Feinberg School of Medicine, Northwestern University Chicago, Illinois , USA

6. Shirley Ryan Ability Lab and Department of Physical Medicine and Rehabilitation, Feinberg School of Medicine, Northwestern University , Chicago, Illinois , USA

Abstract

Abstract Background and Objectives Self-direction is an approach that allows older adults and people with disabilities to determine the home- and community-based services they receive, including the ability to hire caregivers of their choice. Self-direction has been shown to improve outcomes for the service recipients. The promotion of choice and control in self-direction may also affect family caregivers. We conducted a systematic review examining the impact of self-direction on a broad range of caregiver outcomes. Research Design and Methods We conducted a systematic review guided by PRISMA guidelines. Literature search was conducted in 8 databases. We appraised risk of bias using the Joanna Briggs Institute critical appraisal checklists and assessed certainty of evidence using the GRADE framework. Results Sixteen studies meeting inclusion criteria were included. We found, with moderate certainty, that self-direction is associated with improved caregivers’ personal and social well-being. Caregivers also reported reduced unmet needs and increased access to care for the care recipients under self-direction. Self-direction did not appear to reduce caregiving hours. With less certainty, self-direction was also positively associated with increased respite care use, perception of choice, and intention to continue caregiving by caregivers. Discussion and Implications Beyond delivering person-centered services that improve recipient outcomes, self-direction may also improve the outcomes of family caregivers.

Funder

Administration for Community Living, National Institute on Disability, Independent Living, and Rehabilitation Research

Publisher

Oxford University Press (OUP)

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