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Abstract

The Family Quality of Life (FQOL) approach represents a paradigm shift from fixing to supporting people with intellectual/developmental disabilities (I/DD) by changing the focus from the individual to the family and highlighting strengths rather than deficiencies. Aging family caregivers of individuals with I/DD often encounter obstacles, including accessibility, acceptability, and affordability of services. Little is known about best practices to support aging families of adults with I/DD. Understanding how a state-wide peer-mediated family support project implemented in this study helped improve the FQOL of aging caregivers is important in broadening participation of other caregivers in these types of programs. To address these gaps in the literature, Michigan Older Caregivers of Emerging Adults with Autism and Neurodevelopmental Disabilities (MI-OCEAN), a peer-mediated state-wide family support project program, was implemented. The purpose of this study was to examine global and domain-level FQOL changes among aging caregivers of adults with I/DD after participating in MI-OCEAN. This study used a quasi-experimental research design grounded in the FQOL framework with pretest and posttest data gathered from 82 caregivers. Quantitative analyses were conducted to (a) identify changes in domain and global levels of FQOL after participating in MI-OCEAN and (b) how these changes influenced global FQOL. Results of the dependent sample t tests indicated statistically significant changes in eight of the nine domains and global FQOL. Correlation analysis indicated that five of the nine domains (family relationships, support from others [informal support], influence of values, leisure/ recreation, and community participation) were significantly associated with changes in global FQOL. Multiple regression analyses indicated that about 16% of the improvement in global FQOL could be explained by the FQOL domain of informal support. Results highlight the need to invest in improving informal social support for aging caregivers. This study adds to emerging evidence of the benefits of MI-OCEAN in improving the mental health and well-being of aging family caregivers. Peer-mediated family support programs can be an effective method of improving the mental health of aging caregivers of adults with I/DD.

Plain Language Summary

The Family Quality of Life (FQOL) approach views people with disabilities as needing support not fixing. Aging families of people with disabilities face many problems in getting services. We know little about the best ways to support aging families. To address this knowledge gap, we tested a family support project using peer mentors in the state of Michigan. The aim of this study was to see if FQOL of aging caregivers who participated in the project changed. We conducted quantitative analyses of data collected from 82 older caregivers before and after the study. Results indicated that the scores in global FQOL and eight of the nine domains improved. Changes in global FQOL score correlated with changes in domain-level outcomes of five FQOL domains: family, informal support, values, leisure, and community. Increased informal support could explain 16% of the variance in global FQOL. Findings point to the need to find ways to improve informal social support for aging families. Using peers in support programs can improve the mental health of aging caregivers of adults with disabilities.

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Creative Commons Attribution-Noncommercial 4.0 License
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