Bakker Martijn, Schuling Rhoda, Dekker Rienk, Krops Leonie A, de Jong Johan
Department of Rehabilitation Medicine, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.
School of Sport Studies, Hanze University of Applied Sciences, Groningen, The Netherlands.
PLoS One. 2025 Aug 20;20(8):e0329948. doi: 10.1371/journal.pone.0329948. eCollection 2025.
Stroke is a major cause of disability globally, with high recurrence rates despite the implementation of secondary prevention strategies. Promoting physical activity and reducing sedentary behaviour are critical to mitigate these risks. Collaborative research approaches, including citizen science, offer promising methods for developing more effective and sustainable interventions by leveraging patient insights and lived experiences across different research stages.
This scoping review explored the application of citizen science approaches in developing interventions targeting physical activity and sedentary behaviour for people with stroke.
Following Arksey and O'Malley's framework and the PRISMA-ScR checklist, five databases were searched. We included empirical studies involving stroke patients in research on physical activity or sedentary behaviour interventions. Data was extracted on terminology, collaboration methods, and participant roles and analysed using the Participation Matrix framework. Methodological rigor was assessed using the CASP qualitative checklist.
Fourteen studies were included, most published after 2020 and originating from diverse countries. Terms like "co-design," "co-creation," and "patient and public involvement" were prevalent, but "citizen science" was not explicitly mentioned. Methods for active involvement of stroke patients included focus groups, workshops, and advisory panels. Stroke patients primarily participated as advisors or partners during intervention design, with minimal involvement in early research stages, data analysis, or dissemination. Researchers predominantly held decision-making roles.
Citizen science in stroke research is still developing, with limited patient involvement across research phases. Expanding the depth and scope of patient involvement could enhance the relevance and long-term impact of interventions.
中风是全球致残的主要原因，尽管实施了二级预防策略，但复发率仍然很高。促进身体活动和减少久坐行为对于降低这些风险至关重要。包括公民科学在内的合作研究方法，通过在不同研究阶段利用患者的见解和生活经验，为开发更有效和可持续的干预措施提供了有前景的方法。
本范围综述探讨了公民科学方法在为中风患者制定针对身体活动和久坐行为的干预措施中的应用。
按照阿克西和奥马利的框架以及PRISMA-ScR清单，检索了五个数据库。我们纳入了涉及中风患者的身体活动或久坐行为干预研究的实证研究。提取了有关术语、合作方法以及参与者角色的数据，并使用参与矩阵框架进行了分析。使用CASP定性清单评估方法的严谨性。
纳入了14项研究，大多数研究于2020年之后发表，且来自不同国家。“共同设计”“共同创造”和“患者及公众参与”等术语很普遍，但未明确提及“公民科学”。中风患者积极参与的方法包括焦点小组、研讨会和咨询小组。中风患者在干预设计期间主要作为顾问或合作伙伴参与，在早期研究阶段、数据分析或传播方面参与极少。研究人员主要担任决策角色。
中风研究中的公民科学仍在发展，患者在各个研究阶段的参与有限。扩大患者参与的深度和范围可以提高干预措施的相关性和长期影响。
