Abstract
IntroductionIn spite of adolescents' rights to be involved in decisions that concern their health and life, limited research has been published reporting on their involvement in mental health research. Therefore, we aim to present experiences and reflections based on the involvement of adolescents in mental health research, to describe the collaborative relationship between researchers and coresearchers, including the values that underpin their collaboration.MethodsAn autoethnographic approach was used, combined with group reflections. The process was jointly developed, carried out and analysed by adolescent coresearchers and the project's lead researcher over a period of 2 years. The article is jointly authored by the researcher and the ten coresearchers.ResultsSix themes were developed to describe our collaborative relationship, resulting in the involvement of adolescents in decisions about research priorities; in planning and carrying out the research; through to analysis, dissemination and communication of results. The themes include: (1) Commitment motivated by altruism, personal interests and a common purpose; (2) Inclusiveness and support to reduce social uncertainty and strengthen collaboration; (3) Reduced power differentials while ensuring clarity of roles and tasks; (4) Diversity in representation to expand the perspectives of ‘the adolescent voice’; (5) Self‐determination—supporting adolescents' involvement in decision‐making processes; and (6) Flexible and systematic project management. The themes describe the collaboration, the underlying values and motives, the challenges faced and how they were overcome.ConclusionThis self‐reflective process describing a 4‐year collaborative research project resulted in the development of recommendations for involving adolescents in mental health research. The recommendations could potentially contribute to a change of ‘research culture’ to expand the currently limited involvement of adolescents in research.Patient or Public ContributionAdolescents have contributed as coresearchers through all phases of the research project and as coauthors of this article, including planning, participation in the self‐ and group‐reflective processes, analysis and authoring the article.
Highlights
In spite of adolescents' rights to be involved in decisions that concern their health and life, limited research has been published reporting on their involvement in mental health research
Funding information Resilience in Healthcare project, the Research Council Norway (FRIPRO TOPPFORSK funding stream), Grant/Award Number: 275367. This self‐reflective process describing a 4‐year collaborative research project resulted in the development of recommendations for involving adolescents in mental health research
The results of our systematic review on user involvement in adolescents' mental healthcare suggest that there is some research evidence reporting on adolescents' involvement at the individual level, where they are heard and take part in decision‐ making processes, whereas we found less evidence reporting on adolescents' involvement at the systems level.[4]
Summary
In spite of adolescents' rights to be involved in decisions that concern their health and life, limited research has been published reporting on their involvement in mental health research. The results of our systematic review on user involvement in adolescents' mental healthcare suggest that there is some research evidence reporting on adolescents' involvement at the individual level, where they are heard and take part in decision‐ making processes, whereas we found less evidence reporting on adolescents' involvement at the systems level.[4] Involvement in research focusing on adolescent mental health, such as studies assessing existing healthcare services, contributing to the improvement of existing services or development of new interventions, may be considered involvement at the systems level. There is a paucity of research literature reporting on the involvement of youth in mental health research.[6,7] Others found that reasons for not involving youth in research may be due to lack of resources, researchers' concerns about adolescents' well‐being, feeling loss of control of the research process or that peer researchers might not value the inclusion of nonresearchers.[8]
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