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. 2021 Aug;24(4):1044-1055.
doi: 10.1111/hex.13266. Epub 2021 May 15.

Adolescent and young adult patients as co-researchers: A scoping review

Kjersti J Ø Fløtten  1   2 , Ana Isabel Fernandes Guerreiro  2   3 , Ilaria Simonelli  2   4 , Anne Lee Solevåg  5   6 , Isabelle Aujoulat  2   7
Affiliations

Adolescent and young adult patients as co-researchers: A scoping review

Kjersti J Ø Fløtten et al. Health Expect. 2021 Aug.

Erratum in

  • Corrigendum.
    [No authors listed] [No authors listed] Health Expect. 2023 Apr;26(2):940. doi: 10.1111/hex.13695. Epub 2022 Dec 26. Health Expect. 2023. PMID: 36571270 Free PMC article. No abstract available.

Abstract

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.

Keywords: adolescent patients; co-research; health services; participation.

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Conflict of interest statement

The authors declare no conflict of interest.

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