Adolescent and young adult patients as co-researchers: A scoping review.
adolescent patients
co-research
health services
participation
Journal
Health expectations : an international journal of public participation in health care and health policy
ISSN: 1369-7625
Titre abrégé: Health Expect
Pays: England
ID NLM: 9815926
Informations de publication
Date de publication:
08 2021
08 2021
Historique:
revised:
20
02
2021
received:
11
12
2020
accepted:
10
04
2021
pubmed:
16
5
2021
medline:
26
10
2021
entrez:
15
5
2021
Statut:
ppublish
Résumé
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. We conducted a scoping review through searches in MEDLINE, EMBASE, PsychINFO, AMED. 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. 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. This review is part of a research project where the hospital youth council has been involved in discussions of focus area and methods.
Sections du résumé
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.
Identifiants
pubmed: 33991369
doi: 10.1111/hex.13266
pmc: PMC8369088
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Review
Langues
eng
Sous-ensembles de citation
IM
Pagination
1044-1055Commentaires et corrections
Type : ErratumIn
Informations de copyright
© 2021 The Authors. Health Expectations published by John Wiley & Sons Ltd.
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