Since its creation in 2018, the National Youth Advocacy Council, or NYAC (formerly the National Youth Advisory Panel) has advised CHILD-BRIGHT-funded projects on optimizing youth engagement activities. Composed of Canadian youth members who have lived and living experience of a brain-based developmental disability, the council is available to inform research development, from the generation of questions to the dissemination of results, throughout the CHILD-BRIGHT Network.
NYAC members draw on their own lived and living experience and knowledge to fulfill this mandate, which involves providing input on research protocols, recruitment strategies, research intervention procedures, communication plans, and knowledge translation activities and outputs, as well as sharing their perspectives in network reports and blog posts.
In addition to offering this service to CHILD-BRIGHT-funded researchers, the NYAC offers consultations for a fee between October and May to Canadian researchers working on childhood disability research projects not funded by CHILD-BRIGHT as part of the CHILD-BRIGHT Lived and Living Experience Consultation Service. This allows youth to collaborate and share their unique perspectives with researchers, and for researchers to have the opportunity to consult with youth with brain-based developmental disabilities who are currently involved in patient-oriented research as youth research partners or committee members.
Why engage our youth members in research?
There are many reasons to engage NYAC members in research. NYAC members bring to the table points of view on research activities that are grounded in their own lived and living experience, offering a valuable perspective to researchers on their topic of study. This can potentially enable researchers to confirm the validity of their research priorities and test whether the study or project in question is responding to the needs of youth with brain-based developmental disabilities. As the council members are located in four different provinces across Canada, they also offer perspectives that have been shaped by—and can incisively comment on—the different experiences of moving through the health care system in their areas of residence.
The NYAC can be consulted throughout different stages of the research process. NYAC members can provide useful feedback on:
Problem definition and study design
Recruitment strategies. (incl. reviewing posters and flyers)
Survey and interview guide design
Data analysis
And more!
As a result, input from NYAC members offers many potential benefits for a research project involving youth with disabilities.
Depending on the project in question and the population being targeted, one or many NYAC members may offer input through one or more consultations:
Gillian Backlin has completed the technical writing certificate at the British Columbia Institute of Technology. Given her training and experience as a technical writer, Gillian is skilled in communication, knowledge translation, thoughtful listening, and giving clear and insightful feedback. To learn more about Gillian, including her experiences with cerebral palsy, read her member profile here.
As a result of his background and interest in history, NYAC co-chair Hans Dupuis is skilled at textual analysis, often bringing back thoughtful points to the table for discussion. Within a research context, as someone who was initially diagnosed with Asperger syndrome and who has worked very hard on his personal development, he is well-positioned to understand challenges related to comprehension that are linked to autism spectrum disorder. To learn more about Hans, including his experiences with autism spectrum disorder and mild attention deficit, read his member profile here.
Logan Wong is the co-chair of the NYAC, a registered social worker, and an Inclusion, Equity, Accessibility, and Anti-Racism (IDEAA) consultant who is passionate about helping bring youth voices to conversations about research. To learn more about Logan, including his experiences with cerebral palsy, obsessive-compulsive disorder, and a non-verbal disability, read his member profile here.
In addition to her role as NYAC member, Claire Dawe-McCord was also a youth research partner with the READYorNot project. She is currently co-chair of the Kids Come First Ontario Health Team and has been a youth research partner for various organizations for almost 10 years.She is a medical student in her final year at the University of Calgary. To learn more about Claire, including her experiences with ADHD and multiple rare musculoskeletal disorders, read her member profile here.
Shafniya Kanagaratnam is a practical nursing student at Seneca College. She is passionate about youth mental health and learning more about the possible impacts of late ADHD and other brain-based developmental disabilities diagnosis. To learn more about Shafniya, including her experience with ADHD, click here.
Sierra Lynne holds a diploma in Communications, Culture, and Journalism from Okanagan College. He was diagnosed with autism at age 15. He has also been exploring his trans identity and has a unique view of social issues. When Sierra isn’t working, you can find him watching YouTube, Formula 1 races, and late-night shows. Learn more about Sierra here.
Jacob Birchnall is 21 years old and lives in Montreal. Since the fall of 2020, he has attended the École nationale d’aérotechnique to become an aircraft maintenance technician. He also works part-time at RONA. Jacob has four brain-based disabilities: epilepsy, autism, dyslexia, and attention-deficit/hyperactivity disorder. He also has low-frequency (reverse slope) hearing loss. Learn more about Jacob here.
Kelsey Seguin is currently completing her PhD in Rehabilitation Sciences at the University of Ottawa. She holds a Master of Arts in Sociology at the University of Ottawa. She holds an Honours Bachelor’s degree in Psychology from the University of Guelph. Having cerebral palsy, Kelsey has a passion for research involving families of children with developmental disabilities and seeks to make the world more compassionate one step at a time. Learn more about Kelsey.
Tommy Akinnawonu is a student at Toronto Metropolitan University. He researches combining tangible embodied interactions and genetic data at TMU’s Synaesthetic Media Lab (Synlab). He hopes to become a genetic counselor and/or a genetic doctor. Of Nigerian descent, Tommy enjoys drawing, writing, researching youth, disability, and racial activism, and doing fashion shows in his room. Learn more about Tommy.
Read about past NYAC consultations
