Over half of children and youth with mental illness in Canada and the United States do not receive appropriate or adequate treatment, with mental illness and substance use representing the leading cause of disability among youth. Despite ongoing efforts to improve mental health and substance use services, many youth disengage prematurely, which is associated with poorer long-term outcomes. This study explored how youth-friendly research methods can be used to improve services by engaging youth with lived experience in mental health and addiction care.
The study used Youth Participatory Action Research (YPAR) principles and a mixed-methods approach, including focus groups and an online survey. Youth aged 12–25 were recruited through social media and stratified based on their level of service needs. Focus group discussions were analyzed thematically, and a fictional narrative summarizing the findings was created in an animated video, which was then embedded in a survey to validate the analysis and explore participation factors. Data from focus groups and surveys were integrated through triangulation to produce a robust understanding of youth perspectives.
A total of 44 youth completed screening, with 14 participating in pilot focus groups and 24 in subsequent stratified focus groups. Participants’ mean age was 22.3 years, and they represented diverse regions across Canada. Analysis revealed that youth-friendly research was the overarching theme, with sub-themes emphasizing youth desire to participate in research and strategies for implementing youth-centered research approaches. Youth highlighted the importance of choice throughout the research process, including the method of participation and the environment in which feedback is provided.
Youth appreciated opportunities to be heard and valued participating in research that could influence service improvement. They expressed the importance of engaging with peers who shared similar lived experiences, particularly for high-needs youth, and emphasized the need for a comfortable, safe, and non-judgmental research environment. Mixed-method approaches, including focus groups and follow-up surveys, allowed youth to contribute in ways that suited their preferences, promoting meaningful engagement.
The study found that youth participation in service research fosters empowerment and confidence. Youth wanted to provide feedback to peers, researchers, and decision-makers to drive improvements in mental health and addiction services. The findings reinforce that youth service users are not always the same individuals engaged in youth advisory groups, and their perspectives may differ from those of youth participating in more formalized participatory research structures. Flexibility, individualized recruitment, and multimodal data collection methods were key to ensuring youth felt comfortable and autonomous in their participation.
Limitations included the online nature of data collection, which restricted participation to youth with internet access and devices capable of videoconferencing, and the Canadian context, which may limit generalizability. Despite these limitations, the study highlights that meaningful youth engagement in research can inform service improvement and improve youth mental health outcomes.
In conclusion, youth with lived experience of mental health and substance use services want to be meaningfully engaged in service evaluation. Youth-friendly research practices that prioritize autonomy, choice, and safe, supportive spaces are essential to capturing authentic feedback. By incorporating youth perspectives into service design and evaluation, programs can enhance engagement, improve treatment outcomes, and empower youth. These lessons have broader implications for integrated youth services and other youth mental health and substance use programs, demonstrating that authentic youth involvement is critical to addressing the youth mental health crisis.
