Citizen science approaches in the development of post-stroke physical activity interventions: A scoping review

Abstract

Background 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. Objectives This scoping review explored the application of citizen science approaches in developing interventions targeting physical activity and sedentary behaviour for people with stroke. Methods 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. Results 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. Conclusions 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.