Family Impact of Polyhandicap: a Mixed Methodological Approach

• Conditions: Polyhandicap

• Registration Number: NCT04492761
• Lead Sponsor: Assistance Publique Hopitaux De Marseille

Brief 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

Detailed Description

Not available

Study Timeline

• Study Start: 2020-06-01
• Status Verified: 2020-07
• Study First Submitted: 2020-07-27
• Study First Submitted QC: 2020-07-27
• Last Update Submitted: 2020-07-27
• Study First Posted: 2020-07-30
• Last Update Posted: 2020-07-30
• Primary Completion: 2021-06-01
• Study Completion: 2022-06-01

Recruitment & Eligibility

• Status: UNKNOWN
• Sex: All
• Target Recruitment: 260

Inclusion Criteria

• Familial caregivers: member of a family of a polyhandicapped person aged from 8 to 35 years old
• Patients: with severe polyhandicap defined by the combination of motor deficiency and intellectual impairment associated with everyday life dependence, restricted mobility and age at onset of cerebral lesion below 3 years old
• Written consent signed by caregivers for participation

Exclusion Criteria

• caregivers refusing to participate

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Qualite of life	5 years	WHOQOL-Bref

Secondary Outcome Measures

Name	Time	Method
interview content	2 hours	semi-structured interviews

Trial Locations

Locations (1)

Assistance Publique Hôpiatuix de Marseille; 🇫🇷 Marseille, France