CAMH has a secret weapon in its efforts to better meet the needs of young people with mental illness: young people themselves.
Based in the Margaret and Wallace McCain Centre for Child, Youth & Family Mental Health, Youth Engagement Facilitators play a role in designing CAMH research projects, ensuring the language speaks to their generation and presenting findings at international conferences – all in the name of making sure young people have a voice.
“I think there’s a lot of power in this work,” says 21-year-old Emma McCann, a Facilitator since 2016. “There’s a general shift in mental health to recognize that youth – and patients in general – have expertise that should be valued.”
Emma has helped ensure CAMH’s Caribou project meets young people’s needs. Launched in February, Caribou – Care for Adolescents who Receive Information ‘Bout Outcomes – is an Integrated Care Pathway for adolescents with depression. Originally invited to provide feedback on early Caribou materials and co-host focus groups, Emma and fellow Facilitator Jackie Relihan ended up providing more robust feedback around additional resources that could be included, suggesting areas that could benefit from youth input and contributing to the cognitive behaviour therapy manual.
“The role we’ve played has snowballed,” says Emma, who will be co-presenting on Caribou with principal investigator Dr. Darren Courtney at the June 2018 international Cundill Centre for Child and Youth Depression conference in Toronto.
Much of the Youth Engagement Initiative’s success has come from mutual respect – actual youth engagement, not tokenism, explains 23-year-old Joshua Miller.
“A lot of times youth get invited to the table and no one is listening, or maybe they’re invited to a separate table and people treat that as inclusion but it’s more like just checking a box,” says Joshua, also a Youth Engagement Facilitator. “But the Youth Engagement Initiative experience is more genuine.”
In his role, Joshua has contributed to the McCain Centre’s Delphi study, which is informing the development of interventions and programs for youth as they become adults. Joshua and fellow Youth Facilitator Jessica Rong co-designed a short online video to help young people better understand the research, why their participation is important and provided an overview of the Delphi methodology – all in language that spoke to young people.
“We certainly weren’t the final say on things but our views were respected within the circle in terms of designing the study and how best to recruit participants,” Joshua says. In September 2017, Joshua presented with Emma at the International Association for Youth Mental Health in Ireland on some of CAMH’s youth-based projects.
Working with a team of about 80 National Youth Action Council members across the country, the Youth Engagement Facilitators also offer their expertise as young people with lived experience with mental illness.
“My lived experience allows me to come from a deeper place of understanding when it comes to hearing from other youth and their stories about accessing care or struggling with mental illness,” says Joshua. “This isn’t simply a job for me; I really do want to see effective and concrete changes implemented.”
And the team is spreading the word. Jackie and Jessica co-presented in March on two McCain Centre projects at the Child, Adolescent and Young Adult Behavioural Health conference in Tampa, Fl. There, they co-hosted four talks with Dr. Joanna Henderson, Director of the McCain Centre, and CAMH’s Dr. Kristin Cleverley about best practices around engaging youth.
“If we are going to conduct research focused on meeting youth mental health needs, youth must be at the table,” says Dr. Henderson. “It is time youth with lived experience are recognized for the expertise and leadership they can bring to mental health research and to service planning.”