Management of Parkinson’s in the community: interests and expectations of people living with Parkinson’s, family carers, healthcare professionals and stakeholders in Spain

Abstract

This study aimed to explore the interests and expectations of people living with Parkinson’s disease (PD), family carers, health and social care professionals, and key stakeholders regarding relevant systems of support and community resources for PD management. As part of the OPTIM-PARK project (Optimisation of Community Resources and Systems of Support to Enhance the Process of Living with PD), an exploratory qualitative study was conducted in Spain. Forty-one participants completed a GENIE concentric circles mapping exercise to identify existing support systems and community resources. These maps informed subsequent semi-structured interviews. All interviews were digitally recorded and transcribed verbatim for thematic analysis. Participants identified several barriers to effective collaboration across healthcare and social care systems, including poor understanding of PD, limited financial resources, and insufficient communication among professionals and sectors. Facilitators for improved community-based PD management included personalised care pathways, shared decision-making, improved access to professional services and local resources, and the strategic use of Information and Communication Technologies (ICTs). Participants emphasised the need for long-term investment and strong institutional commitment to reinforce community-based support networks for individuals living with PD.

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ORCID for Mari Carmen Portillo: orcid.org/0000-0003-1583-6612

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