Polyhandicap
Conditions
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
Interventions
BEHAVIORALqualitative study
The qualitative approach will be based on content analysis of - Isemi-structured nterviews of families
Sponsors
Assistance Publique Hopitaux De Marseille
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
8 Years to 35 Years
Healthy volunteers
No
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Qualite of life | 5 years | WHOQOL-Bref |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| interview content | 2 hours | semi-structured interviews |
Countries
France
Contacts
Primary ContactKarine Baumstarck
Outcome results
None listed