Consumer Direction and Family Caregiver Outcomes: A Systematic Review

Objective(s): To investigate the impact of consumer direction programs on caregivers of older adults and people living with disabilities (PLWD). Consumer direction programs provide older adults and PLWD with the authority to direct their own care, including hiring family and friends to provide personal care services. By allowing recipients and families to have a say in how their needs are met and financially reimbursing family caregivers for their time, consumer direction may also improve outcomes for caregivers.

Data Sources: Search was conducted in eight databases (PubMed, CINAHL, PsycINFO, Embase, Cochrane, Scopus, Global Health, Web of Science) and the gray literature.

Study Selection: Quantitative and mixed-methods studies that reported any outcomes related to the caregiver were included. Two authors independently screened studies; two additional authors resolved conflicts.

Data Extraction: Extracted data included study setting and design, participant characteristics, description of consumer direction program, and caregiver outcomes. Two authors independently appraised risk of bias using Joanna Briggs Institute checklists. Data extraction was completed by one author and verified by a second author.

Data Synthesis: Seventeen articles were included in this review. Consumer direction programs were associated with caregivers’ 1) increased respite care use, 2) better personal wellbeing, 3) intention to continue caring for recipient, 4) perception of choice, and 5) improved access to services/decreased unmet needs as reported by caregivers in all studies that examined these outcomes. There were inconsistent findings for improvement of caregivers’ physical and mental health, employment, financial wellbeing, and reduction of caregiver burden.

Conclusions: Consumer direction may improve outcomes for caregivers through supporting caregivers’ wellbeing and caregiving needs. By supporting caregivers, consumer direction may also enable caregivers to care for their loved ones at home longer. Future studies should examine what aspects of consumer direction are associated with caregiver outcomes (e.g., caregiver payment, increased control).

Author(s) Disclosures: S.K. is a postdoctoral fellow supported by the National Institute on Disability, Independent Living, and Rehabilitation Research (Grant No. 90ARPO0001).