Exploring the Life Experiences, Needs, and Expectations of Families Caring for Older Adults with Severe Polyhandicap

What this Trial Is About

Researchers are exploring the experiences, needs, and expectations of family caregivers, including parents and siblings, of aging individuals with polyhandicap who are 35 years or older. Polyhandicap is a chronic condition involving profound intellectual disability and severe motor impairments, which significantly limits autonomy and communication. The study aims to better understand the social and emotional challenges faced by these caregivers as their relatives age, to improve support and assistance for these families. The study uses a mixed-methods approach combining quantitative questionnaires and qualitative interviews. Parents and siblings provide information through standardized self-reported questionnaires and interviews about quality of life, coping, emotional intelligence, and burden. Parents data were previously collected, while siblings data will be newly gathered via phone and mail. The study also integrates findings from multiple university and healthcare teams to analyze the experiences from both parents and siblings together. Participants will complete questionnaires and take part in interviews lasting about 30 to 60 minutes to share their experiences. Researchers will analyze these responses to understand family caregivers perspectives on aging relatives with polyhandicap. This includes comparing quantitative and qualitative data over a two-month period. The study helps identify specific caregiver needs and supports better transitions for families dealing with the aging process. Participation may involve filling booklets and engaging in interviews, with all information collected confidentially.

Experience Life, Needs and Expectations of Families of Older Polyhandiccaped Persons