Listening to You(th): Authentic Partnership with Youth and Families in Mental Health Research

Centre for Addiction and Mental Health

Youth mental health research is surely moving in the right direction by recognizing youth and family engagement as valuable and necessary, but discussions around the methods of authentic engagement are still in their infancy. Based on learnings from CAMHs McCain Centre and SickKids’IN-ROADS (“International Network for Research Outcomes in Adolescent Depression Studies”) research project, our diverse team will walk you through what authentic partnership looks like. This interactive workshop will be relevant to researchers and youth and family advocates alike; researchers will learn tangible strategies (“the dos and don'ts”) to authentically engage partners with applied examples of our research team’s experiences, and youth and family advocates will learn how to recognize and advocate for meaningful collaboration. Audience members can take part in interactive components of this workshop, including identifying themes of authentic engagement in examples from our team to practice recognizing them in real-world research.


Matthew Prebeg
I’m really passionate about bridging the gap between youth mental health research and youth engagement. One of the big milestones I hope to achieve in my career is to normalize lived experience within research teams. Currently, that has brought me to my position as a research assistant at CAMH in association with SickKids that involves lived expertise as an asset, and I hope to maintain this perspective as I pursue my master’s education in clinical psychology next year.

Karolin Krause
I am a postdoctoral fellow with the Cundill Centre for Child and Youth Depression at the Centre for Addiction and Mental Health in Toronto. My research focuses on strengthening the quality, consistency, and youth-centeredness of outcome measurement for youth anxiety and depression, in clinical trials and measurement based care. I obtained my PhD in Psychology from University College London, and hold an MSc in Sociology from the London School of Economics and Political Sciences. I have been involved in the development of several core outcome sets, including as research fellow with the International Consortium for Health Outcomes Measurement (ICHOM) and as a co-investigator of the IN-ROADS initiative at the Hospital for Sick Children in Toronto.

Nancy Butcher
I’m a mental health researcher and methodologist who leads the TORCH (Toronto Outcomes Research in Child Health) Initiative, which is a patient-centred programme of research at the Hospital for Sick Children dedicated to advancing the science of outcome selection, measurement, and reporting in clinical research. I’m also an Assistant Professor in the Department of Psychiatry at the University of Toronto and a Cundill Scholar with the Cundill Centre for Child and Youth Depression, Centre for Addiction and Mental Health (CAMH).   

Megan Patton
I am currently in my last year of my undergraduate degree studying psychology and a research assistant at the University of Calgary and SickKids Hospital. I’m really passionate about youth engagement in research. With experience as a youth partner and research assistant, I bring a unique perspective to this work. I am motivated to create change in the narrative around being a researcher with lived experience and the ways in which youth engaged research is conducted.

Key takeaways

  • Less than 15% of youth and children are involved in the development of core outcome measures
  • The presenters encourage researchers to engage with youth as early on as possible in their studies, preferably at or before research begins, to support decision-making in relation to the overall project and how it unfolds over time
  • The more intensively and meaningfully youth participate in research, the more resources we need to put aside. Thusly, engagement researchers are important to factor in right from the start of a research project
  • “It’s important to be engaging with youth for the right reasons.” – Megan Patton
  • “We don’t want to assume youth will want to be identified as a youth or as the person with lived experience in various projects.” – Megan on checking in with young people on how they want to be identified and when, when involved in projects
  • Encourage researchers to support their colleagues who would like to engage youth in their work but who have less experience with youth engagement and/or are uncertain how to get started.

Key Learning Objectives (defined by presenters)

  1. Identify the “dos and don’ts” of authentic youth and family engagement and how to apply them in a meaningful way
  2. Recognize and advocate for meaningful and authentic youth and caregiver engagement

Key Themes

  1. Youth Engagement
  2. Advocacy
  3. Research gaps

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