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

IF 2.1 3区医学 Q2 PSYCHOLOGY, EDUCATIONAL

Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-02-11 DOI:10.1111/jar.70018

Karine Baumstarck, Sibylle Del Duca, Houria El Ouazzani, Ilyes Hamouda, Any Beltran Anzola, Marie-Anastasie Aim, Marie-Christine Rousseau

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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

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来源期刊

Journal of Applied Research in Intellectual Disabilities Multiple-

CiteScore

4.70

自引率

12.50%

发文量

期刊介绍： JARID is an international, peer-reviewed journal which draws together findings derived from original applied research in intellectual disabilities. The journal is an important forum for the dissemination of ideas to promote valued lifestyles for people with intellectual disabilities. It reports on research from the UK and overseas by authors from all relevant professional disciplines. It is aimed at an international, multi-disciplinary readership. Topics covered include community living, quality of life, challenging behaviour, communication, sexuality, medication, ageing, supported employment, family issues, mental health, physical health, autism, economic issues, social networks, staff stress, staff training, epidemiology and service provision.