Centering the person in development of a model of care for people with Parkinson's disease: a qualitative study.

PURPOSE

Obtain the perspectives of people with Parkinson's disease (PwPD) and their care partners (CPs) about their lived experiences with Parkinson's Disease (PD) to characterize a new model of care that meets their biopsychosocial and healthcare needs.

METHODS

This phenomenological study included semi-structured focus groups exploring PD diagnosis/care experiences and conceptualizations of an ideal model of care among PwPD and CPs. Data were analyzed thematic analysis.

RESULTS

Twenty-five individuals (PwPD,  = 18; CPs,  = 7) participated across four focus groups. Researchers developed four themes to describe participants' lived experience with, barriers to, and needs for PD care. These themes characterize key hopes for care as: 1) person-centered, 2) coordinated, 3) provides access to education and information, and 4) builds on the benefits of community.

CONCLUSIONS

Participants emphasized that, beyond clinical interactions and diagnosis-centered conversations, they wished for holistic healthcare that acknowledged the larger picture of their life with PD. An ideal model of care for PwPD should aim to be person centered, maximize collaboration and coordination across multiple disciplines, provide access to a wide range of information and resources, refer to community centers and support groups, and be designed with ease of navigation in mind.