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Clinical Trial
. 2025 Jan;38(1):e70018.
doi: 10.1111/jar.70018.

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

Karine Baumstarck  1 , Sibylle Del Duca  2 , Houria El Ouazzani  1   2 , Ilyes Hamouda  1   2 , Any Beltran Anzola  2 , Marie-Anastasie Aim  3 , Marie-Christine Rousseau  1   4
Affiliations
Clinical Trial

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

Karine Baumstarck et al. J Appl Res Intellect Disabil. 2025 Jan.

Abstract

Background: Advancements in medicine have increased the life expectancy of the people with profound intellectual and multiple disabilities. The hypothesis is that as parents get older, they worry about no longer being there for their child. This paper explores the extent to which the experiences of older parents may differ from that of younger parents.

Method: The participants were parents of people included in the French EVAL-PLH cohort. Psychological status, quality of life and coping were compared between (i) parents of the youngest persons (< 20 years) versus parents of the oldest persons (≥ 35 years); (ii) youngest (< 45 years) versus oldest parents (≥ 55 years).

Results: Compared with the youngest parents, the oldest parents did not differ in anxiety-mood disorders, quality of life or coping strategies used.

Conclusion: We did not confirm that ageing generates psychological changes for parents. Future qualitative studies should deeply examine this underexplored issue.

Trial registration: Clinical trial number: NCT02400528.

Keywords: ageing; life experience; polyhandicap; profound intellectual and multiple disabilities.

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Conflict of interest statement

The authors declare no conflicts of interest.

References

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