Grandparents Raising Grandchildren with Disabilities: Findings from a Scoping Review

Background and Purposes: Grandparents who assume primary caregiving responsibility for grandchildren with disabilities represent a distinct caregiving population situated at the intersection of aging, disability, and child welfare systems. Although research has examined grandparents raising grandchildren and families of children with disabilities independently, less is known about how these lines of inquiry intersect. This scoping review seeks to address this gap through the exploration of the following research questions: (1) What is known about the experiences of grandparents raising grandchildren with disabilities? (2) What are the characteristics of studies examining this population? and (3) What does the available literature report regarding prevalence, contributing factors, caregiver needs, policy influences, and interventions?

Methods: Following a five-stage scoping review framework, primary research studies were identified through structured searches in EBSCO databases and then supplemented by an ancestry review. Of 279 records identified, duplicates were removed prior to independent screening of 245 titles and abstracts by two reviewers. Eighty-seven articles then underwent full-text review, with discrepancies resolved through consensus. Fifty-five studies ultimately met inclusion criteria for extraction.

Results: Studies represented multiple disciplines and countries, while employing qualitative, quantitative, and mixed-methods designs. Few studies reported prevalence estimates; among those studies that sampled custodial grandparents, the proportion raising a grandchild with a disability ranged from approximately 27% to 61%. Findings further indicate that entry into custodial caregiving frequently follows parental substance use, incarceration, mental health issues, or child welfare involvement, often compounded by fragmented disability service systems. Grandparents report navigating complex educational, medical, and behavioral systems with limited age-responsive support. Financial hardship, health impacts, legal challenges, and role strain are common, alongside strong commitments to intergenerational stability and family preservation. Policies governing disability eligibility, guardianship, and income eligibility often inadequately account for skipped-generation households, contributing to service access barriers. Few studies rigorously evaluated interventions specifically targeted at custodial grandparents raising grandchildren with disabilities; the most commonly identified supports emphasized family-centered practice, peer support, or service navigation assistance but without experimental evaluation.

Conclusion and Implications: This review identifies limited prevalence data, significant gaps in intervention research, limited theoretical integration across aging and disability scholarship, and insufficient attention to structural inequities shaping caregiving trajectories. Further, by integrating aging and disability literatures, this review advances the social work knowledge base and outlines priorities for future empirical and intervention research. Specifically, findings underscore the need for social work research that develops and tests multilevel interventions, evaluates policy reforms affecting skipped-generation households, and addresses structural inequities shaping caregiving trajectories.