User involvement in adolescents’ mental healthcare: a systematic review

Abstract

More than one out of ten adolescents suffer from mental illness at any given time. Still, there is limited knowledge about their involvement in mental healthcare. Adolescents have the right to be involved in decisions affecting their healthcare, but limited research focuses on their engagement and decision-making. Therefore, this systematic review aims to explore the existing experiences with, the effectiveness of, and safety issues associated with user involvement for adolescents’ mental healthcare at the individual and organizational level. A systematic literature review on user involvement in adolescents’ mental healthcare was carried out. A protocol pre-determined the eligibility criteria and search strategies, and established guidelines were used for data extraction, critical appraisal, and reporting of results. Quantitative studies were analysed individually due to heterogeneity of the studies, while qualitative studies were analysed using thematic synthesis. A total of 31 studies were included in the review. The experiences with user involvement were reported in 24 studies with three themes at the individual level: unilateral clinician control versus collaborative relationship, capacity and support for active involvement, the right to be involved; and two themes at the organizational level: involvement outcomes relevant to adolescents’ needs, conditions for optimal involvement. The effectiveness of user involvement was reported in seven studies documenting fragmented evidence related to different support structures to facilitate adolescents’ involvement. The safety associated with user involvement was not reported in any studies, yet a few examples related to potential risks associated with involvement of adolescents in decision-making and as consultants were mentioned.

Characteristics of the ideal healthcare services to meet adolescents' mental health needs: A qualitative study of adolescents' perspectives

“…This included some training workshops to support their research skills. Three coresearchers had previously planned and carried out cross‐sectional surveys in youth mental health, two were coauthors of a systematic review 12 and all coresearchers were coauthors of a qualitative study, where their contributions to adolescent mental health research have been further described. 28 Moreover, the coresearchers increased their academic writing and research skills as part of their academic education, which some started in 2018 and others in 2020.…”

“…In recent years, youth have been consulted about healthcare services 9–11 . The existing international literature primarily provides insight on user involvement at an individual level; less is known about involvement at the organizational level 12 …”

Elements in Mental Health Interventions Associated with Effects on Emotion Regulation in Adolescents: A Meta-Analysis

“…In other interventions the focus was on teaching adolescents to set realistic goals for themselves (Ettelson, 2003) or use goal setting as a motivational exercise to explore expectations and discuss the pros and cons of changing (McIndoo, 2016). By actively involving adolescents in setting goals about their health, the health care professional shows respect for their needs and opinions (Viksveen et al, 2021), which, in turn, can lead to an enhanced sense of control and empower the adolescent. A consequence of this may be better clinical outcomes and higher satisfaction with care (Langer & Jensen-Doss, 2018).…”

“…In addition, adolescents often want to be involved in decisions affecting their mental healthcare (Dogra, 2005;Gros et al, 2017). However, involvement can take many forms ranging from just being heard about their opinion to being involved in setting goals for treatment and further in the decision-making process about treatment (Viksveen et al, 2021). Although user involvement is generally seen as beneficial, research on outcomes of individual user involvement is scarce (Viksveen et al, 2021).…”

Involvement of adolescent representatives and coresearchers in mental health research: Experiences from a research project

“…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 decisionmaking 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. Alternatively, it could be considered a fourth level.…”