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
Recruitment & Eligibility
- Status
- UNKNOWN
- Sex
- All
- Target Recruitment
- 260
- 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
- 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 HĂ´piatuix de Marseille
🇫🇷Marseille, France