ERIC Number: EJ1461137
Record Type: Journal
Publication Date: 2025-Jan
Pages: 6
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1360-2322
EISSN: EISSN-1468-3148
Available Date: 2025-02-11
Increased Life Expectancy of People with Profound Intellectual and Multiple Disabilities: What Does It Change for Parents?
Karine Baumstarck1; Sibylle Del Duca2; Houria El Ouazzani1,2; Ilyes Hamouda1,2; Any Beltran Anzola2; Marie-Anastasie Aim3; Marie-Christine Rousseau1,4
Journal of Applied Research in Intellectual Disabilities, v38 n1 e70018 2025
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 ([greater than or equal to] 35 years); (ii) youngest (< 45 years) versus oldest parents ([greater than or equal to] 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.
Descriptors: Quality of Life, Severe Disabilities, Multiple Disabilities, Intellectual Disability, Parents, Coping, Stress Variables, Age Differences, Anxiety Disorders
Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://bibliotheek.ehb.be:2191/en-us
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Grant or Contract Numbers: N/A
Author Affiliations: 1EA 3279, CEReSS—Research Centre on Health Services and Quality of Life, Aix Marseille University, Marseille, France; 2Epidemiology and Health Economy Department, Aix Marseille University, Marseille, France; 3Laboratoire CRESCO, Institut National Universitaire JF Champollion, Rodez, France; 4Fédération Des Hôpitaux de Polyhandicap et Multihandicap, San Salvadour Hospital, University Hospital of Paris, Hyères, France