Exploring the experiences of families caring for older individuals with severe disabilities
Experience Life, Needs and Expectations of Families of Older Polyhandiccaped Persons
This study looks at the experiences and needs of families caring for older adults with severe disabilities to find better ways to support them.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 82 (estimated) |
| Ages | 35 Years and up |
| Sex | All |
| Sponsor | Assistance Publique Hopitaux De Marseille Academic / other |
| Locations | 7 sites (Hendaye and 6 other locations) |
| Trial ID | NCT06222112 on ClinicalTrials.gov |
What this trial studies
The PolyAGE project aims to investigate the life experiences, needs, and expectations of familial caregivers—specifically parents and siblings—of aging individuals with polyhandicap aged 35 and older. Through interviews, the study will gather insights into the social representations and decision-making processes of these caregivers. By employing an interdisciplinary approach that combines social psychology and public health, the study seeks to better understand the challenges faced by these families and identify ways to provide improved support. This observational study does not involve any interventions but focuses on qualitative data collection to inform future care strategies.
Who should consider this trial
Good fit: Ideal candidates for this study are parents or siblings of individuals aged 35 and older with severe polyhandicap.
Not a fit: Patients who do not have familial caregivers or whose caregivers do not meet the inclusion criteria will not benefit from this study.
Why it matters
Potential benefit: If successful, this study could lead to enhanced support systems and resources for families caring for individuals with severe disabilities.
How similar studies have performed: While this study addresses an underexplored area, similar qualitative studies have successfully highlighted the needs of caregivers in other contexts.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Mother or father (\>=18 years) of a with severe polyhandicap aged 35 and over at the time of inclusion * Person (\>=18 years) having at least one parent in common with a person with a severe polyhandicap aged 35 and over at the time of inclusion * Person agreeing to participate after having been informed of the study's objectives and procedures Exclusion Criteria: * Parents and siblings whose inclusion criteria concerning the Persons with severe polyhandicap are not fulfilled * Parents and siblings who refuse to participate
Where this trial is running
Hendaye and 6 other locations
- APHP Hôpital Marin de Hendaye — Hendaye, France (Recruiting)
- AP-HP Hôpitaux San Salvadour — Hyères, France (Recruiting)
- Fondation John Bost — La Force, France (Recruiting)
- Assistance Publique Des Hopitaux de Marseille — Marseille, France (Not_yet_recruiting)
- Université Aix Marseille — Marseille, France (Not_yet_recruiting)
- Université de Montpellier — Montpellier, France (Not_yet_recruiting)
- Groupe Polyhandicap France (GPF) — Paris, France (Not_yet_recruiting)
Study contacts
- Principal investigator: karine baumstarck, PI — Assistance Publique des Hôpitaux de Marseille (AP-HM)
- Study coordinator: karine baumstarck, PI
- Email: karine.baumstarck@univ-amu.fr
- Phone: 04 91 32 44 59
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.