Enabling the Participation of People with Parkinson’s and their Caregivers in Co-Inquiry around ...
summary
A 16-month co-inquiry with 16 support-group participants, including 7 core co-researchers, produces a prototype called Parkinson's Radio: edited, community-led audio episodes built from recorded peer discussions and researcher-conducted expert interviews, combined via paper prototyping, rich pictures and joint editing (participants signaled editorial changes live). Findings show peer stories drive trust while experts not automatically trusted, production work concentrates on active volunteers, and offline delivery matters; the radio prototype is completed and showcased, but sustainability and equitable contribution remain unresolved.
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chapters (8)
- 0:00Introduction and project overview
- 2:34Building trust and community values
- 4:21Workshop phases and concept formulation
- 8:15Co-producing the radio-style show
- 13:58Key findings and challenges
- 16:46Supporting participation and future work
- 17:16Q&A: Diversity in Parkinson’s experiences
- 18:42Q&A: Managing expectations in research
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