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Peer-reviewedCC BYResearch involvement and engagement

What do older adults think about involvement in health research through a citizen science lens? A situated qualitative study.

  • Elaine Santana1
  • Joana Bernardo2
  • Rosa Silva3
  • Fernanda Lanza4
  • Iria Dobarrio-Sanz5
  • Sílvia Silva6
6 affiliations
  1. 1University of Coimbra, Health Sciences Research Unit: Nursing (UICISA: E), Nursing School of the University of Coimbra (ESEUC), Rua Dr. José Alberto Reis, Coimbra, 3000-232, Portugal. [email protected].
  2. 2Center for Innovative Care and Health Tecnology (ciTechcare), School of Health Sciences, Polytechnic of Leiria, Leiria, Portugal.
  3. 3Nursing School, University of Porto, RISE-Health, Nursing School, University of Porto, Porto, Portugal.
  4. 4University of Coimbra, Health Sciences Research Unit: Nursing (UICISA: E); Federal University of São João Del-Rei., Minas Gerais, Brazil.
  5. 5University of Coimbra, Health Sciences Research Unit: Nursing (UICISA: E);, Coimbra, Portugal.
  6. 6University of Coimbra, Health Sciences Research Unit: Nursing (UICISA: E), Nursing School of the University of Coimbra (ESEUC), Coimbra, Portugal.
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Abstract

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.

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Cite

BibTeXRIS
BibTeX
@article{santana2026what,
  title = {{What do older adults think about involvement in health research through a citizen science lens? A situated qualitative study.}},
  author = {Elaine Santana and Joana Bernardo and Rosa Silva and Fernanda Lanza and Iria Dobarrio-Sanz and Sílvia Silva},
  journal = {Research involvement and engagement},
  year = {2026},
  month = oct,
  doi = {10.1186/s40900-026-00960-y},
  url = {https://europepmc.org/article/MED/42963594},
  note = {CC BY},
}
RIS
TY  - JOUR
TI  - What do older adults think about involvement in health research through a citizen science lens? A situated qualitative study.
AU  - Elaine Santana
AU  - Joana Bernardo
AU  - Rosa Silva
AU  - Fernanda Lanza
AU  - Iria Dobarrio-Sanz
AU  - Sílvia Silva
PY  - 2026
DA  - 2026/10/30
JO  - Research involvement and engagement
DO  - 10.1186/s40900-026-00960-y
UR  - https://europepmc.org/article/MED/42963594
AB  - 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.
SN  - 2056-7529
ER  -