본문으로 건너뛰기
← 뒤로

"The more you learn, the more you can influence"-learning circles to support citizen science in Parkinson's disease: a pilot study in Sweden.

Frontiers in public health 2025 Vol.13() p. 1717528

Luckhaus JL, Scott Duncan T, Hellqvist C, Riggare S

📝 환자 설명용 한 줄

[INTRODUCTION] Parkinson's disease (PD) is the fastest growing neurological condition, making it a public health concern.

이 논문을 인용하기

BibTeX ↓ RIS ↓
APA Luckhaus JL, Scott Duncan T, et al. (2025). "The more you learn, the more you can influence"-learning circles to support citizen science in Parkinson's disease: a pilot study in Sweden.. Frontiers in public health, 13, 1717528. https://doi.org/10.3389/fpubh.2025.1717528
MLA Luckhaus JL, et al.. ""The more you learn, the more you can influence"-learning circles to support citizen science in Parkinson's disease: a pilot study in Sweden.." Frontiers in public health, vol. 13, 2025, pp. 1717528.
PMID 41613076

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.

MeSH Terms

Humans; Parkinson Disease; Pilot Projects; Female; Male; Sweden; Citizen Science; Middle Aged; Aged; Self Care; Patient Education as Topic; Learning; Peer Group