NCT04492761

Family Impact of Polyhandicap: a Mixed Methodological Approach

Family Impact of Polyhandicap: Mixed Methodological Approach

• Status: Unknown
• Phase: —
• Study type: Observational
• Enrollment: 260 (estimated)
• Sponsor: Assistance Publique Hopitaux De Marseille · Academic / Other
• Sex: All
• Age: 8 Years – 35 Years
• Healthy volunteers: Not accepted

Summary

Polyhandicap (PLH) is a complex disability condition corresponding to a chronic affliction occurring in an immature brain, leading to the combination of profound mental retardation and serious motor deficit, resulting in an extreme restriction of autonomy and communication. In a preliminary work, we demonstrated that French families reporteda deterioration of the quality of life. This first study, based on a cross-sectional study and quantitative methods, did not allow to explore: 1) the dynamic aspect and the evolution over time of this experience, 2) the mechanisms underlying the difficulties encountered, the needs and expectations of families

Conditions

• Polyhandicap

Interventions

Type	Name	Description
BEHAVIORAL	qualitative study	The qualitative approach will be based on content analysis of - Isemi-structured nterviews of families

Timeline

• Start date: 2020-06-01
• Primary completion: 2021-06-01
• Completion: 2022-06-01
• First posted: 2020-07-30
• Last updated: 2020-07-30

Locations

1 site across 1 country: France