Engaging youth in shaping research
New CAMH initiatives are embedding young people in research as co-creators, led by CAMH’s Margaret and Wallace McCain Centre for Child, Youth & Family Mental Health.
“Our goal is to have a youth voice present in all of our research that affects youth. We advocate for youth involvement in the planning, design and implementation of research,” says Dr. Joanna Henderson, Director of the McCain Centre and Clinician Scientist at CAMH.
“There’s tremendous value that can be brought to a project through youth engagement and that strengthens a project,” she says. “By listening to youth, we’ll ask better questions. We’ll measure the right things. This knowledge will transform our health care system.” This approach is also in line with both provincial and federal government mandates to give patients a bigger voice as partners in research.
A novel approach
A cornerstone of the McCain Centre’s model is employing youth with lived experience of mental health or addiction challenges on the research team. In the role of youth engagement facilitators, they are key voices in the team’s decision-making and lead several initiatives, from establishing a group of more than 100 young mental health advocates across Canada to talking with students about mental health in schools.
Dr. Joanna Henderson, Director of CAMH's McCain Centre, and Olivia Heffernan, Youth Engagement Facilitator
Developing this novel approach has been an evolution. When Dr. Henderson began engaging youth formally in her research in 2008, few models existed. In late 2013, she hired two youth as peer facilitators on a part-time basis, and their role evolved as the team learned by doing. Today, four youth engagement facilitators are on the team, and the team continues to grow.
The youth engagement facilitators are active in research at varying levels of intensity, and they often engage youth in local communities on projects. Their work can include ad-hoc roles at selected stages on projects. At a more involved level, a youth-adult partnership kicked off last year to develop and study new youth mental health services (see below, “From concept to completion”). The team is also at the early stages of planning for youth to initiate and lead their own research.
Keys for successful engagement
“It’s not always easy to engage youth in a fulsome way,” says Dr. Henderson. It requires time and effort on all sides to consider a broader spectrum of voices when making decisions, to build youth’s knowledge and skills as researchers and to find a range of ways to involve youth.
A fundamental component is a commitment to understanding the perspectives of youth and working in ways that reflect this understanding. “In every instance, we prioritize honesty, authentic engagement and making this into a positive experience for youth,” says Dr. Henderson.
“Being involved right from the planning and design stages for a research project is important so that we can be sure our contribution can be meaningful,” says Olivia Heffernan, Youth Engagement Facilitator.
From concept to completion
The team’s largest initiative to date is YouthCan IMPACT, a partnership among youth, family members, four community organizations and four hospitals to create and evaluate three new clinics for youth mental health. The first location opened in June, and the clinics are designed as one-stop shops for young people aged 11 to 25 and their families, offering brief solution-focused therapy, peer support for youth, skills support for families, access to Internet tools and onsite psychiatric services.
Youth have played a major role in developing the clinics and the research project, and this will continue at every stage. In a randomized controlled trial starting this month, the team will compare the performance of these new clinics to usual care provided through outpatient psychiatric services for youth aged 14 to 18 in four hospitals. The research is funded by the Ontario SPOR Support Unit and the Canadian Institutes of Health Research.
Two youth engagement facilitators are co-investigators. They led a five-hour brainstorming session with Toronto youth last spring to define the study outcome to evaluate.
The most important measure of success for the new clinics, gleaned through this session, was supporting youth with mental health challenges “to be able to function – to live the way I want, set my own goals and get help to reach my goals,” says Heffernan, a research co-investigator.
“It’s really exciting because young people see the value of their input,” says Heffernan. “We’re changing the way research is happening and is perceived by youth – research can be exciting and make an impact on their lives in the near future.”
“Done properly, everyone benefits from youth engagement,” says Dr. Henderson. “I really feel we’ve learned more from our youth leads than they’ve learned from us.”
The McCain Centre team hopes their work will encourage other researchers to bring youth into the fold. "We're here as a resource to help engage youth in a meaningful way," says Dr. Henderson.