Family Impact of Polyhandicap: a Mixed Methodological Approach (PolyMiMe)

Public Assistance-Hospitals of Marseille (AP-HM)

Status: Unknown

Conditions: Polyhandicap

Treatments: Behavioral: qualitative study

Study type: Observational

Funder types: Other

Identifiers

NCT04492761

2019-53

Details and patient eligibility

About

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

Enrollment: 260 estimated patients

Sex: All

Ages: 8 to 35 years old

Volunteers: No Healthy Volunteers

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