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.

Introduction

Major Depressive Disorder in adolescents (MDD-A, ages 13–18) is prevalent, impairing and associated with risk of suicide (1). Integrated care pathways (ICPs) are treatment decision aids that can guide a multidisciplinary team in offering service users care based on recommendations from high-quality clinical practice guidelines (2) with the aim of optimizing outcomes. Our group created an ICP for the treatment of MDD-A called “CARIBOU” (Care for Adolescents who Receive Information ‘Bout OUtcomes). It includes seven core components: assessment, psychoeducation, psychotherapy options, medication options, caregiver support, monthly youth-centred team reviews incorporating measurement-based care (MBC) and shared decision-making, and graduation (3).

Youth engagement refers to the active and meaningful collaboration with youth who have lived or living experiences of mental health challenges throughout the research process (4). Youth engagement addresses a moral imperative to involve and empower individuals who have traditionally been passive recipients of youth clinical research findings (5). The research and program benefits of youth engagement are wide-reaching, including increased stakeholder buy-in (6,7), enhanced knowledge dissemination (8), and increased relevance and sustainability (9,10). Youth who have been engaged in research have also reported personal benefits such as developing skills, increasing knowledge of mental health, and feeling empowered (10–13).

While youth engagement in mental health research appears to be growing more common, there is still a lack of evidence to guide researchers on effective youth engagement (14,15). Various models for youth engagement exist (16), which provide theoretical guidance for engaging youth within a research project. One such model is the McCain Model for Youth Engagement (4), which was co-developed with youth. As both the McCain Model and the CARIBOU pathway were developed at the Centre for Addiction and Mental Health (CAMH), this model has been foundational in our group’s youth engagement efforts. However, one major challenge reported by researchers is uncertainty about how to engage youth on a practical level, such as a lack of competency of youth-friendly engagement methods and funding issues (6,14).

To begin bridging this gap, our group has previously published papers providing mental health researchers with practical guidance for youth engagement (10), including the INNOVATE Research: Youth Engagement Guidebook for Researchers (“INNOVATE Guide”) (4). Researchers have additionally expressed a need for more reports of youth engagement in mental health research, co-written with youth researchers, to provide practical guidance specific to their academic perspectives (6). Our group has previously reported on the development stages of the CARIBOU pathway (3), although details of the methods and activities for engaging youth at each stage were not reported. As such, the objective of this article is to describe how existing knowledge of youth engagement strategies was integrated in the development and implementation of CARIBOU, to serve as an exemplar of the application of guiding principles for researchers engaging youth in creating and studying mental health interventions, such as ICPs. We used the second-edition Guidance for Reporting Involvement of Patients and the Public (GRIPP2) checklist to guide the reporting of our experiences (available upon request; 17).

Youth Engagement Roles

Youth engagement is a dynamic process; that is, a one-size-fits-all approach to youth engagement is not optimal. Engagement levels can overlap, and different levels of engagement can be implemented within one research project at various stages (16). In addressing this consideration, two distinct youth partner roles were established to support CARIBOU: youth engagement specialists (YESs) and youth advisors.

YESs are part-time staff at the McCain Centre’s Youth Engagement Initiative whose role involves facilitating research engagement based on their lived/living experiences. YESs receive training in research ethics (e.g., Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans [TCPS 2] and Foundations of Privacy in Research) and youth engagement practices (e.g., “Youth Engagement 101” and “Group Facilitation 101” in-house training). Two YESs performed the following functions: (1) support collaboration in the implementation of youth engagement across research, (2) mentorship and guidance to youth advisors (see below), (3) facilitation of communication between youth advisors and other members of the research team and (4) mediation of disagreements between youth advisors and other members of the research team. As staff, they had regular weekly work hours, were members of the research team and had monthly meetings with the scientists to discuss core decisions about intervention development and testing. YESs were involved through ongoing consultation and partnership by joint decision-making.

Youth advisors were youth with lived/living experience of depression and who had participated in the CARIBOU intervention in its pilot form. Youth advisors were younger and newer to advisory, providing a novel viewpoint. They met with YESs to review and revise material that was presented to them. YESs were their main point of contact, although youth advisors occasionally met with research team members when direct consultation was valuable (e.g., reviewing outcome measurement instruments). Their time commitment varied depending on their capacity, interest and the stage of the project (ranging from 0–4 hours a week, depending on the task; for an average of 40 hours per year). The number of youth advisors also varied due to changes in interest and capacity throughout the project (typically five youth advisors at any given time). Youth advisors received honoraria as compensation for their time ($25/hour, which increased to $30/hour over the course of the project).

Youth Engagement within ICP Development Steps

The INNOVATE Research: Youth Engagement Guidebook for Researchers (“INNOVATE Guide”) developed by the McCain Centre provides specific recommendations and examples for engaging youth in research (4). Recommendations are reflected in various youth engagement activities throughout the CARIBOU project. These steps are outlined in Table 1, alongside ratings of a group of youth partners of the extent of involvement. Detailed steps outlining the development of the ICP are detailed elsewhere (3).

Table 1.

Extent of involvement of Youth Partners in the development and testing of the CARIBOU Pathway

Level of Youth Engagement
Step	None	Minimal	Moderate	Extensive
1. Identify need for pathway	x
2. Assemble working group			x
3. Define intended outcomes		x
4. Review literature	x
5. Design Initial Pathway		x
6. Prepare physical resources				x
7. Plan clinician education activities				x
8. Pilot pathway				x
9. Revise pathway			x
10. Full implementation/scale-up			x
11. Continue evaluation/revision			x
12. Sustaining				x

Past Areas of Moderate or Extensive Involvement

Assembling a Working Group

Youth partners (i.e., YESs and youth advisors) were integrated into the project team at this phase. Youth partners attended meetings with the team to collaborate on both intervention development and research design and methodology. Meetings were regularly held with youth partners to build rapport and identify shared values. This process was led by YESs to support youth advisors in feeling comfortable. This process allowed for rapid and collaborative decision-making when new opportunities or threats arose throughout the project, and reinforced moderate to extensive engagement activities across other areas of the project.

Preparing Needed Physical Resources

Youth partners led the development of resources for the implementation of the CARIBOU pathway, including the design, content, layout, and language of each (18). YESs designed the resources with regular consultation with youth advisors and the research team. Resources included: “At a glance” postcards made to share summarised information about the CARIBOU pathway, a clinician-facing Cognitive Behavioural Therapy (CBT) manual, youth-facing CBT worksheets, youth pathway orientation materials, a series of educational handouts on an overview of youth depression and the effects of medication, eating, sleep and exercise on youth depression, and an educational video series for youth and the public.

Piloting and Evaluating the Pathway

A 20-week pilot controlled trial of the CARIBOU pathway was conducted (19). Scientists consulted youth partners on the development of study recruitment materials and the recruitment and consent process. Training for the research staff was held by YESs to educate them on the youth-friendly practices for working with young participants (e.g., review and practice of assessment material).

The pilot stage involved a qualitative component to evaluate the acceptability of the intervention. Given their training in group facilitation, YESs were involved in designing and co-facilitating focus groups. Youth partners also participated in post-pilot project knowledge translation activities. YESs and youth advisors co-created information pamphlets on the results of the trial to provide to youth participants. They co-authored the published paper on the results of the pilot trial (19) and presented at conferences describing their involvement.

Revising the Pathway

Following the pilot trial, several revisions were identified by youth partners, and the intervention was adjusted accordingly, now labelled CARIBOU-2. This included revisions to: the pathway design (e.g., providing individual Brief Psychosocial Intervention [BPI; 20] as a second-line psychotherapy option); the onboarding and education process of the pathway (e.g., providing Mood Foundations sessions separately for youth and their caregivers); and MBC measures used in the intervention (e.g., selecting a self-report measure of functioning that is youth-friendly and gender-inclusive).

Current Areas of Extensive Involvement

Planning Education Activities

A training program is being developed for experienced CBT clinicians on the implementation of the CARIBOU CBT component using the co-developed manual. YESs are highly involved in these training experiences, by developing relevant case scenarios that could support clinician learning and increase application to real-world practice.

Continued Evaluation and Revision

CARIBOU-2 is currently being tested in a controlled clinical trial in community-based mental health agencies. YESs continue to have high involvement in identifying effective community-based engagement strategies (e.g., develop site youth advisory groups). Youth advisors continue to provide consultation on participant recruitment, assessment processes, compensation processes, and outcome selection.

Previous Steps Where Youth Engagement Could Have Been Enhanced

In retrospect, there were multiple steps in the pathway development process which could have benefitted from more youth partner input.

1. The original identification of the need for the pathway was largely based on information available to project leaders.

2. No formal discussion around priority outcomes took place with youth partners concerning the pathway specifically.

3. While the literature review process considered consumer involvement in appraisal of source materials (i.e., quality of guideline on which to base the pathway), local youth perspectives were not incorporated.

4. While youth input was extensive in revisions of the pathway, the initial design of the pathway was largely driven by project leaders.

5. Formal evaluation of youth engagement activities was not done, although various tools exist to provide youth an avenue for repeatable, quantifiable and less biased feedback, such as the Public and Patient Engagement Evaluation Tool (PPEET; 21).

Future Activities

Results from the CARIBOU-2 controlled clinical trial will inform future efforts to implement, scale-up and sustain the intervention to organizations nationally and internationally. It is anticipated that youth partners will continue to be involved in the process. It is currently proposed that local youth engagement teams are a part of the implementation process for continued feedback as youth preferences may differ from one region to another. As we plan and perform our current activities, long-term and widespread impact is a priority. CAMH’s Youth Engagement Initiative (YEI) also has processes in place to support sustainability of youth engagement, such as the training of new youth partners and turnover planning.

Discussion

Successes

The involvement of youth at various stages and in various capacities promoted a reciprocal learning environment within the research team. In discussions among our team, youth partners reported developing new skills in research, including design, knowledge translation and communication. Youth highlighted the importance of these opportunities in identifying their interests in research for future volunteer or career paths. Youth felt that the opportunity to make an impact on decisions that affected their community based on their lived experience was empowering. Likewise, researchers were able to develop their understanding of community- and equity-based approaches to conducting clinical research. Several considerations identified by youth, such as the importance of accessible language and the expertise that lived experience offers, allowed researchers to consider their decisions in a broader context, like how the CARIBOU pathway will influence the lives of youth end users.

Likewise, the large body of resources co-developed by youth partners was vital in optimizing the design and delivery of the CARIBOU pathway. We attribute a variety of successes to the involvement of youth with lived experience at various stages of the project.

Lessons Learned

Youth engagement involves a great degree of consideration and compromise on both sides, which has been a valuable learning experience for our research team. Key learnings included:

1. Lived experience is an expertise. In practising youth engagement, it is important to be reminded of this core reason for doing it in the first place. This involves treating youth as experts and subsequently addressing power imbalances that may exist between roles. Creating a space for open discussion, and having trusted allies youth feel comfortable confiding in, is important for reducing tokenism.

2. Youth should be involved early in the process. Youth engagement should be considered at a project’s conception to ensure lived experience can influence core decisions.

3. Transience and demand for youth roles require a flexible approach. YESs held casual staff roles and youth advisors received per-task honorarium. The difference in levels and types of involvement meant that engagement was always a youth-centred conversation, involving strategies and opportunities for all participating youth to be involved in ways that fit them and their roles. Likewise, as certain youth transitioned out of their roles, turnover of youth partner roles was expected. Our team was responsible for navigating this by giving youth opportunities for smooth offboarding and for educating and engaging new youth partners without impeding the research process.

4. Authentic youth engagement requires adaptability. Youth engagement can be a lengthy process, involving the need to create a youth-friendly space and provide support and mentorship to youth new to research processes. Youth may also have limited availability given other demands, and thus meetings may need to be held outside typical working hours. Finally, youth may identify needed revisions important to them that were not accounted for in the protocol development or research ethics board submissions. To ensure youth feedback can authentically be incorporated, research timelines likely need to be adjusted and extended.

5. Approach youth engagement intentionally and collaboratively. Be mindful about what can and cannot change about the project, and intentionally engage youth on specific decisions that can be reasonable implemented. When their feedback does go against initial plans, be transparent about the limitations of research and collaborate to find solutions that work for both parties.

Conclusion

As identified within the McCain Model for Youth Engagement, different types and levels of youth engagement are appropriate, depending on differences in project activities, youth roles, and team dynamics. These findings illustrate that youth engagement can be flexibly incorporated into the development of an ICP despite the lack of a specific ICP-focused youth engagement model. The success of this can be attributed to the direct involvement of youth in shaping what their engagement looks like. As ICPs become increasingly popular, researchers should consider the involvement of end users as early as possible.