Adolescent and young adult patients as co‐researchers: A scoping review
(2021) Health Expectations : an international journal of public participation in health care and health policy — Vol. 24, n° 4, p. 1044-1055 (2021)
Files
AujoulatAdolescents.pdf
Open Access - Adobe PDF
- 397.24 KB
Details
- Authors
Fløtten, Kjersti J. Ø. 
- Abstract
- (en) BACKGROUND: As part of a research project aimed at evaluating a hospital-based adolescent transition programme, we asked ourselves what is known about the ethical and methodological challenges of research involving adolescent patients as co-researchers. The aim of our review was to summarize empirical evidence and identify knowledge gaps about the involvement of young patients as co-researchers. METHODS: We conducted a scoping review through searches in MEDLINE, EMBASE, PsychINFO, AMED. RESULTS: We found reports of young patients being actively engaged as co-researchers in any stage of a research project, although commonly they were not involved in every stage. Including young patients as co-researchers is resource demanding and time-consuming. Involving young patients as co-researchers contributes to the fulfilment of their right to participation and may improve the relevance of research. Benefits for the young co-researcher include empowerment, skills building and raised self-esteem. Few authors go into detail about ethical considerations when involving young co-researchers. None of the included articles discuss legal considerations. DISCUSSION AND CONCLUSION: No lists of recommendations are given, but recommendations can be deduced from the articles. There is need for time, funding and flexibility when including young patients as co-researchers. Knowledge gaps concern legal and ethical dilemmas of including a vulnerable group as co-researchers. More reflection is needed about what meaningful participation is and what it entails in this context. PATIENT OR PUBLIC CONTRIBUTION: This review is part of a research project where the hospital youth council has been involved in discussions of focus area and methods.
- Affiliations
Citations
Fløtten, K. J. Ø., Guerreiro, A. I. F., Simonelli, I., Solevåg, A. L., & Aujoulat, I. (2021). Adolescent and young adult patients as co‐researchers: A scoping review. Health Expectations : an international journal of public participation in health care and health policy, 24(4), 1044-1055. https://doi.org/10.1111/hex.13266 (Original work published 2021)