Impact of disability on families: grandparents' perspectives.
Grandparents are unpaid case-managers whose own well-being is at risk—include them in your family support plans.
01Research in Context
What this study did
Meier et al. (2012) talked with Australian grandparents of children with disabilities.
The team asked open questions about daily life, worries, and how they help their adult children and grandchildren.
No numbers were counted; the goal was to hear the grandparents’ own words.
What they found
Grandparents act like unpaid case-managers.
They give emotional first-aid to parents, shuttle kids to appointments, and lie awake fearing the future.
This hidden work costs them: they feel tired, left out of planning, and unsure what will happen when they can’t help anymore.
How this fits with other research
Titlestad et al. (2019) extends these findings.
They studied 117 U.S. grandparents who are the main caregivers for autistic grandchildren.
Both papers show grandparents doing heavy lifting, but L et al. add the extra strain of full-time custody and tight budgets.
Shearn et al. (1997) and Swettenham et al. (2013) echo the same theme with different kin: parents and siblings also report endless, evolving care work.
Together the studies map one big picture—disability support is a relay race passed through generations, yet each runner is barely noticed by services.
Why it matters
If you write behavior plans, invite grandparents to the table. Ask what they already do, what they worry about, and what training they want. A fifteen-minute phone call can save hours of crisis support later and keep the whole team running longer.
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02At a glance
03Original abstract
BACKGROUND: Caring for a child with a disability can be a unique and challenging experience, with families often relying on informal networks for support. Often, grandparents are key support resources, yet little is known about their roles and experiences. Reporting on data collected in a larger Australian study, this article explores grandparents' experiences of caring for a child with a disability and the impact on their family relationships and quality of life. METHOD: A qualitative purposive sampling design was utilised; semi-structured interviews were conducted with 22 grandparents (17 women, 5 men) of children with a disability. Grandparents ranged in age from 55 to 75 years old and lived within a 90-min drive of Brisbane, Australia. Interviews were transcribed and responses analysed using a thematic approach, identifying categories, themes and patterns. FINDINGS: Four key themes characterised grandparents' views about their role in the family: holding own emotions (decision to be positive), self-sacrifice (decision to put family needs first), maintaining family relationships (being the 'go-between') and quality of life for family in the future (concerns about the future). CONCLUSIONS: Grandparents are central to family functioning and quality of life, but this contribution comes with a significant cost to their own personal well-being. Implications for policy, practice and research are discussed, particularly grandparents' fear that their family could not cope without their support.
Journal of intellectual disability research : JIDR, 2012 · doi:10.1111/j.1365-2788.2011.01403.x