A scoping review of the literature on grandparents of children with disabilities

Grandparents of children with disabilities are significant members in many families. However, their roles and unique experiences have not been explored extensively. Importantly, professionals often do not know how to include grandparents in their grandchild’s care and/or education when parents are primary caregivers. Therefore, to understand the issues more fully, we wanted to gather, in one comprehensive review, the research literature on grandparents who are extended family members to children with disabilities. To do this, we searched big databases and identified 31 studies. We found that there were mostly low-quality studies with a small number of participants. We also found that grandparents varied greatly in their age, education, employment and living arrangements. They have unique challenges in adapting to their grandchild's disability and little opportunities to interact with professionals regarding their grandchild's disability and functioning. Most grandparents share the experiences of gradual emotional adjustment to their grandchild's disability, active family involvement, positive perceptions of their family and grandchild's disability and lack of services for them. No interventions designed to support grandparents were identified in the research literature. We conclude that research on this topic is needed, specifically studies that will rigorously examine grandparents’ support needs while acknowledging their cultural, religious and demographic factors.

Novak-Pavlic M, Abdel Malek S, Rosenbaum P, Macedo LG, Di Rezze B. A scoping review of the literature on grandparents of children with disabilities. Disabil Rehabil. 2021 Jan 21:1-15. doi: 10.1080/09638288.2020.1857850. Epub ahead of print. PMID: 33478262.