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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
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| qualitative study | Behavioral | The qualitative approach will be based on content analysis of - Isemi-structured nterviews of families |
| Measure | Description | Time Frame |
|---|---|---|
| Qualite of life | WHOQOL-Bref | 5 years |
| Measure | Description | Time Frame |
|---|---|---|
| interview content | semi-structured interviews | 2 hours |
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Inclusion Criteria:
Exclusion Criteria:
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- family member (parent, siblings, uncle / aunt) of a person with a severe multiple disability whose age is between 8 and 35 years old
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Karine Baumstarck | Contact | 04 91 32 44 59 | karine.baumstarck@univ-amu.fr |
| Name | Affiliation | Role |
|---|---|---|
| Jean Olivier ARNAUD | Assistance Publique Hôpitauix de Marseille | Study Director |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Assistance Publique Hôpiatuix de Marseille | Recruiting | Marseille | 13354 | France |
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