Grandparents of Children With Intellectual and Developmental Disabilities: Navigating Roles and Relationships.

The team talked with 22 grandparents who help raise a child with intellectual or developmental disabilities.

They asked open questions about daily jobs, family rules, and feelings.

No numbers were taken; the goal was to hear stories in the grandparents’ own words.

Grandparents wear four hats: backup babysitter, money helper, emotional anchor, and disability teacher.

They often feel caught between parents and professionals, unsure when to speak up.

Love is strong, but so is fatigue; many hide stress to keep peace.

Brown et al. (2019) also used interviews to show parents and staff feel mixed about adult sexuality in IDD. Both studies prove family views are layered, not black-and-white.

Zwiya et al. (2023) call for participatory, justice-based research. Their paper updates the 2018 plea by saying, “Include grandparents at the table, not just parents.”

Wilkinson et al. (2012) found doctors want hands-on training to feel confident with IDD patients. Grandparents voice the same need: real tools, not polite advice.

If you write a behavior plan, add a grandparent box. Ask who picks up the child, who pays for therapy, and who may sabotage the plan out of love. A five-minute grandparent interview can save five weeks of drift. Offer them visuals, respite numbers, and clear boundaries so the whole team rows the same way.