Exploring and improving patients' and caregivers' self-management with Parkinson's disease through a one-year group empowerment experimentation next door (PROXIPARK)

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Leprovost, Joée | Devos, David | Cottencin, Olivier | Demeestere, Claire | Delarue, Coralie | Clouzet, Mathilde | Moreau, Caroline | Defebvre, Luc | Messaadi, Nassir | Bayen, Sabine

Edité par CCSD -

Objectives: To improve the self-management with Parkinson's disease (PD) for patients and their caregivers through a group empowerment experimentation next door. Methods: A qualitative prospective participatory research action was led during a year. An empowerment program was co-constructed with patients (n=4), their caregivers (n=3), and a multidisciplinary facilitating primary care team (n=5). All the participants lived near each other. During the first group session, patients and caregivers were separated into two focus groups to share their personal experiences with PD, expectations towards the program format and its goals. Eight sessions of 90 minutes each were built up step by step. Final individual 2 face-to face interviews collected the patients' and caregivers' opinion about the coconstructed program. Results: Patients and caregivers were satisfied and wanted to continue the program. They felt breaking out of isolation, being part of a group, rediscovered pre-PD leisure and psycho-social well-being. According to them, their understanding of PD, and their self-management were improved. One participant deplored redundances, with a prior workshop about falls. Conclusions: The program improved psychosocial aspects of disease management. Innovation: This new person-centred, near their homes, support offer, empowers patients with PD (or other chronic conditions) and their caregivers, to improve personal disease management.

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