Adolescents’ Lived Experiences of Mental Health: A Systematic Umbrella Review to Aid Assessment Reform

Background: Adolescent mental health is deteriorating, and identifying those in need is challenging because of flawed assessments, flooded services, and low help-seeking by those most in need. A critical problem is the omission of adolescents’ perspectives in the development of diagnostic frameworks and questionnaires. Synthesising lived experience evidence can help inform better identification of youth mental health needs.Methods: A preregistered systematic search was conducted through Medline: Ovid, Epistemonikos, ProQuest dissertations, Prospero, and Psyarxiv. Systematic reviews were included if they contained qualitative evidence from adolescents (aged 10-24) experiencing the most common clinically-relevant problems (e.g., depression, self-harm). Informed by lived experience expertise, qualitative data were synthesized, including to understand which experiences were transdiagnostic (common across different mental health types). Experiences were also compared to existing questionnaires and reported alongside quality assessment via AMSTAR2.Outcomes: Eighteen reviews were synthesized into 30 experiences (subthemes), which were grouped into six themes: social disconnection, behavioural expression, how I relate to the experience, emotional experiences, negative and shifting beliefs of self, and disrupted ability to function. Interpretation: This review highlights the need to update existing frameworks and provides initial groundwork for doing so. We argue social indicators should be given more weight, and lived experience evidence also challenged traditional boundaries between symptoms and functioning. Experiences tended to be transdiagnostic, with evidence of dimensionality, overlap between disorders, and new experiences missing from existing frameworks revealed. We make recommendations for research and practice to improve how young people in need are identified and supported.