Youth partner engagement in the development of an integrated care pathway for the treatment of adolescents with depression.

Abstract

Major Depressive Disorder in adolescents (MDD-A) is prevalent and a risk factor for suicide. Integrated care pathways (ICPs) offer a structured approach to care, leveraging recommendations from clinical practice guidelines. The CARIBOU pathway is an ICP for MDD-A co-designed with youth. While the literature is rich in benefits and theoretical approaches for involving youth in the research process ("youth engagement"), there is a growing need for practical frameworks and exemplars to support researchers in implementing such approaches. Informed by the McCain Model for Youth Engagement, this article outlines where, when, and how youth engagement occurred throughout the development of the CARIBOU pathway. Youth who were engaged ("Youth Partners") included Youth Engagement Specialists (YESs) and Youth Advisors, who held distinct but overlapping roles at each stage of development. Engagement activities throughout the research process are described. Youth Partners provided significant contributions to various ICP components, including the design and piloting of the pathway, the development of educational resources, and knowledge dissemination. Youth engagement activities supported the development of the CARIBOU pathway by increasing the relevance to the target youth population and enhanced the research team's understanding of community- and equity-based approaches to interacting with youth participants in clinical research. This article highlights the importance of early and sustained youth engagement in complex clinical research, emphasizing their expertise as crucial assets. These insights underscore the necessity of flexibility, adaptability, and meaningful collaboration, setting a precedent for future multi-component interventions to prioritize youth engagement to ensure interventions resonate with their intended youth audience.