Family quality of life from the perspective of older parents.
Older parents of adults with ID spell out three service gaps—money, staff, and aging plans—that still haunt families today.
01Research in Context
What this study did
The team talked with older parents who still care for their adult sons and daughters with intellectual disabilities.
They used open interviews to learn how these families view quality of life and what services they need now.
What they found
Parents said three things keep them up at night: money for services, finding trained staff, and planning for their own aging.
They worry most about who will help when they can no longer lift, chase, or speak for their child.
How this fits with other research
Whitehouse et al. (2014) later counted the same problems: most adults with ID still live at home and parents stay highly stressed.
Burford et al. (2003) looked at Swedish families and saw the same social isolation, even with strong welfare checks.
Aznar et al. (2005) in Latin America used the same open-talk method and built a 42-item tool that centers family culture.
Together the four studies show the same gaps repeat across time, place, and age groups.
Why it matters
If you write adult-transition plans, ask the parent: “Who will help when you can’t?” Build respite, staff training, and future housing into the plan now, not later.
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02At a glance
03Original abstract
BACKGROUND: Family quality of life is a relatively new field of study. Research has primarily concentrated on families of children and young adults with intellectual disability (ID). METHOD: This project explored the concept of family quality of life from the perspective of older parents who had adult children with ID aged 40+. Focus groups, individual interviews and surveys investigated family issues related to maintaining or enhancing family quality of life. RESULTS: Parents reported positive aspects of lifelong caregiving and quality of family life. There were concerns for the health of all family members, the social lives of their adult child, long-term living arrangements and the role of siblings. CONCLUSION: Current family and service issues that need to be addressed are related to funding and finances, staffing, and the need to adapt to age-related needs.
Journal of intellectual disability research : JIDR, 2005 · doi:10.1111/j.1365-2788.2005.00753.x