OTRCTJournal of applied research in intellectual disabilities : JARID2025

Increased Life Expectancy of People With Profound Intellectual and Multiple Disabilities: What Does It Change for Parents?

Karine Baumstarck, Sibylle Del Duca, Houria El Ouazzani and 4 others

PMID 39934966

WHAT IT FOUND

Parents of older people with profound intellectual and multiple disabilities, and parents aged 55 or older, did not report more anxiety, lower quality of life, or poorer coping.

Environmental quality of life was higher.

Key findings

01The main comparison found no difference in anxiety, mood, most quality-of-life domains, or coping between older and younger parents.

02Parents of older children and older parents themselves differed in practical and health circumstances, including living alone, education, medical visits, psychological medication, and chronic disease.

03Environmental quality of life was higher in the older groups, while other quality-of-life domains did not differ.

STILL TO COME

How it was doneWhat they foundWhat it means for OTs

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What it does not show

The study compared different parents at one time, so it cannot show that ageing caused any change in parents' wellbeing. Parents were voluntary participants in a French cohort, and the paper does not explain why some of the 394 participating parents were not included in the 327 analysed. The age groups were set by consensus of three experts, and the paper does not state a single pre-specified primary outcome. The study measured parents' self-reported questionnaire scores and did not report patient outcomes or service use details that would show how to change care.

Declared interests

The authors declared no conflicts of interest. The study was funded by Institut National de la Santé et de la Recherche Médicale.

The easy way to misread this

Do not conclude that parents of people with profound intellectual and multiple disabilities become more distressed as their child or as they themselves age. The study compared different parents at one time and found no difference in anxiety, mood, most quality-of-life domains, or coping, so it cannot show a causal effect of ageing.

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