What do older adults think about involvement in health research through a citizen science lens? A situated qualitative study
INTRODUCTION: Citizen science (CS) has emerged as a promising approach to foster public involvement in the production of scientific knowledge, including in the field of health. However, for involvement to be effective, it is essential to examine the circumstances surrounding participation particularly from citizens' perspectives in order to understand motivations, perceived benefits, and the conditions that may enable or hinder meaningful involvement in the process. OBJECTIVE: To explore community-dwelling older adults' perceptions and expectations regarding prospective involvement in health research through a citizen science lens. METHODS: An exploratory, descriptive qualitative study was conducted using a focus group with community-dwelling older adults. Data were analysed using content analysis, supported by ATLAS.ti software. RESULTS: Three themes were identified: (1) Between volunteering and science; (2) Becoming a future citizen scientist: identity, motivations, and perceived benefits; and (3) Becoming a future citizen scientist: challenges and conditions for involvement. Participants associated involvement with volunteering and social contribution, highlighting motivations such as contributing to society, staying active, and strengthening social ties. Anticipated benefits included lifelong learning, personal validation, and wellbeing. Key barriers included the need for training and ongoing support, technical language, and balancing involvement with personal routines. Role clarity, accessible communication, and alignment of expectations emerged as central conditions for effective involvement. CONCLUSION: This exploratory study provides preliminary and situated insights into how older adults perceive prospective involvement in health research through a citizen science lens. The findings suggest that future citizen science initiatives in health should make citizens' roles, expectations and opportunities for influence explicit, while ensuring accessible communication, training, support, flexibility and recognition. These elements may help researchers move beyond symbolic involvement and support older adults in assuming a more confident and meaningful role in the research process.
Authors
- Elaine Santana (ORCID: https://orcid.org/0000-0002-5550-8018)
- Iria Dobarrio‐Sanz (ORCID: https://orcid.org/0000-0002-4405-5412)
- Joana Bernardo (ORCID: https://orcid.org/0000-0003-3614-9061)
- Sílvia Silva (ORCID: https://orcid.org/0009-0006-9703-2974)
- Fernanda Lanza
- Rosa Silva
Institutions
- Federal University of São João del-Rei (BR)
- Instituto Politécnico de Leiria (PT)
- Universidade do Porto (PT)
- Escola Superior de Enfermagem de Coimbra (PT)
- University of Coimbra (PT)
Publication Details
- Journal
- Research Involvement and Engagement
- Published
- 2026-10-30
- DOI
- https://doi.org/10.1186/s40900-026-00960-y
- Primary Topic
- Mental Health and Patient Involvement
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- Universidade de Coimbra
- Fundação para a Ciência e a Tecnologia