Family Impact of Polyhandicap: a Mixed Methodological Approach

Assistance Publique Hopitaux De Marseille260 enrolled

Overview

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

Study Type

OBSERVATIONAL

Enrollment

260

Conditions

Polyhandicap

Interventions

qualitative studyBEHAVIORAL

The qualitative approach will be based on content analysis of - Isemi-structured nterviews of families

Eligibility

Sex: ALL

Medical Language ↔ Plain English

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

Outcomes

Primary Outcomes

Qualite of life

WHOQOL-Bref

Time frame: 5 years

Secondary Outcomes

interview content

semi-structured interviews

Time frame: 2 hours