Passionate voices and lived experience shape mental health research and care

“I was going through a lot — and it felt like the system was working against me. I would have done anything, just to have something,” reflects Freeha on navigating the mental health system as a young person.

“When you're going through so much emotionally and physically, you need strong community-centred support,” adds Tommy Akinnawonu.

With the recent opening of The Summit: Marian & Jim Sinneave Centre for Youth Resilience, young people and their families will now have access to the community care they need. The centre will provide nation-leading mental health care for young people and their families, situated right in the community.

Integrated into The Summit is the innovative Mental Health Research 4 Kids (MHR4K) program, which places researchers in the clinic setting alongside families and their care providers. Led by researchers at the University of Calgary’s Alberta Children's Hospital Research Institute and the Hotchkiss Brain Institute, MHR4K is supported by the Alberta Children's Hospital Foundation.

Putting lived experience at the forefront of research

Youth and young adults with lived experience in the mental health system play a vital role in shaping research goals. Supported by ACHF and a Pathways to Healing grant, an advisory council of 17 passionate youth and young adults ranging from 14 to 26 years of age have come together to help guide MHR4K’s new investigations at The Summit.

As research partners, these young people, including Tommy and Freeha, are providing their perspectives to inform research and, ultimately, improve care. Researchers will seek input from the council at various stages of their projects to gain input on the best tools and most meaningful engagement for youth and families.

“Some of the research they are involved in will be directly shaping aspects of the clinical care they see at the centre,” says Dr. Whitney Hindmarch, PhD, program manager for MHR4K, whose role includes supporting the oversight of the youth research partner council.

The council had its inaugural meeting in October 2022, and has already provided impactful consultation on mental health research. The youth research partners co-chair meetings, inform research consultations and support engagement within the group. Through the council, youth influence research by providing their time and perspective on projects important to them.

“I’ve had a lot of experience with mental health care, but not a lot of very good experiences,” says Tommy, a 17-year-old Grade 12 student. “I like the idea of being part of something that would have helped a younger me.”

“We are taking a different approach to research with this partnership and creating new pathways for young people to receive support and care,” says Freeha, a second-year neurosciences student at UCalgary.

“It's exciting to be a part of creating that change.”

Building relationships through safe spaces and bringing diverse voices together

Recognizing the need to have diverse perspectives, experiences and voices when developing research, the advisory council works collectively to create welcoming, safe and respectful spaces to conduct this work.

“The council is a space where people care deeply about mental health, and want to make it better,” says Freeha. “Being in a setting where you know your opinion is going to be listened to and talked about — that matters.”

“I really like the dynamic of all of it — collaborating with people with the same outlook and have gone through similar experience as my own,” says Tommy. “As someone who's Black — my culture is wrapped around the idea of family and community and collective healing — so a place like The Summit would have meant a lot to me. Maybe being part of this work will help someone who's also Black or a person of colour who has similar feelings towards collective healing and collective identity.”

Hindmarch says The Summit will benefit youth now and for generations to come through its integrated research approach, but also thanks to its commitment to see researchers, young people and care providers as a cohesive, supportive community.

“We know that partnership with young people is critical for us to better meet the changing needs of children and adolescents through research,” she says.