ArticleFrontiers in public health2025
"The more you learn, the more you can influence"-learning circles to support citizen science in Parkinson's disease: a pilot study in Sweden.
Article in Frontiers in public health, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
Introduction: Parkinson's disease (PD) is the fastest growing neurological condition, making it a public health concern. There is still much to be learned about this complex disease, and citizen science-the involvement of the public in scientific research-has been used for public health initiatives in other conditions. Meaningful engagement in science requires knowledge and skillset to do so, including a foundational understanding of one's condition. Learning circles are a well-established peer-learning format which have been used for patient education in other conditions. Aim: To explore the potential of learning circles for strengthening self-care and citizen science in Parkinson's disease. Methods: Four rounds of online learning circles (6-9 persons with PD, 1 h/week over 3 weeks) were held between May-July 2025, with 21 participants completing a whole round, and eight dropped out. Semi-structured interviews were conducted before and after the intervention, and the 16 participants who participated in both were included in the analysis. Data were analyzed using a framework-based longitudinal thematic approach. Participant-by-theme matrices captured individual change and group patterns, and findings were synthesized under the three World Bank's pillars of empowerment (resources, agency, context), with color coding distinguishing timepoints. Results: Resources: Participants described gaining new knowledge and mindset of PD on a general and personal level, in part through peer-learning. Agency: Participants expressed self-efficacy and began seeing themselves as the main driver of their care, resulting in (re-)engaging in self-care. Context: The dual researcher-PwP role of the facilitator proved crucial. The digital format was appreciated, and challenges in healthcare and society were discussed. Conclusions: Learning circles show promise as a format for strengthening self-care and citizen science in Parkinson's disease. This participatory approach may advance citizen science by turning lived experience into collective insights.
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