"You need to know that you are not alone": the sustainability of community-based dance programs for people living with Parkinson's disease.

Abstract

To identify factors contributing to the long-term sustainability of community-based dance programs for people living with Parkinson's disease in order to inform the design and development of sustainable programs. Multi-site ethnographic fieldwork was conducted at four different preexisting dance programs for people living with Parkinson's disease. Dancer, facilitator, and community stakeholder perspectives were gathered via semi-structured interviews in order to create a deeper understanding of how existing programs navigate challenges and maintain stability. Transcripts and field notes were analyzed via reflexive thematic analysis. Interviews were conducted with 18 participants (eight dancers with Parkinson's disease, seven dance facilitators, one classroom assistant, and two community stakeholders). Four key areas for supporting program sustainability were identified: (1) finding an organizational structure that works, (2) balancing funding, fundraisers, and fees, (3) prioritizing dancer experience and satisfaction, and (4) recruiting and retaining committed, high-quality facilitators. Cultivating multiple funding sources; forging strategic connections with local Parkinson's organizations and arts institutions; building a critical mass of facilitators and administrators with diverse skillsets; offering hybrid online delivery where possible; and ensuring that the dancer experience is low-pressure, varied, and enjoyable can support the long-term sustainability of dance programs for people living with Parkinson's disease.