Domains of planning for future long-term care of adults with intellectual and developmental disabilities: Parent and sibling perspectives.
Jane Lindahl, Natalie Stollon, Katherine Wu and 7 others
PMID 31012229WHAT IT FOUND
Parents and siblings of adults with IDD described seven long-term care planning areas: housing, legal planning, choosing a caregiver, finances, daily care, medical management, and transportation.
Plans ranged from vague hopes to definite arrangements, and few housing plans were official.
Key findings
01Interviews produced a framework of seven long-term care planning domains: housing, legal planning, identifying a primary caregiver or overseer, financial planning, day-to-day care, medical management, and transportation.
02Housing was the most discussed domain, mentioned by 22 of the 25 parents and siblings; legal planning by 15, identifying a primary caregiver by 14, financial planning by 11, day-to-day care by 6 parents, and medical management and transportation by 4.
03Planning ranged from aspirational hopes to definite arrangements, and very few families had put housing plans in writing or made anything official.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
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What it does not show
The study used a convenience sample recruited through hospital clinics and advocacy groups, so participants were disproportionately knowledgeable about services and had already obtained them. The sample was small and mostly White and higher income, so it may not represent families with fewer resources, different backgrounds, or long waits for services. The researchers interviewed parents and siblings but not the adults with IDD themselves, so the paper reports caregiver perspectives rather than the adults' own planning. Parents and siblings were analysed together, so differences between these groups were not reported. Survey information about the adults with IDD came only from parents who participated, so it covered the 15 adults with IDD who had a parent in the study.
Declared interests
The paper reports no conflicts of interest. It does not say who funded the work.
The easy way to misread this
Do not read the seven domains as evidence that a planning programme works. This was an interview study of what parents and siblings were thinking about, not a trial of an intervention, and the sample was small and mostly White and higher income.