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

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.