Youth Engagement in Research

The Youth Engagement in Research study aims to develop training materials with and for youth with neurodevelopmental disabilities to support their knowledge, skills, and confidence as research partners.

Feel free to watch our videos co-created by researchers and partners with lived experiences. We hope these provide context for what we mean by youth engagement in research.

Note: We are currently not recruiting participants.

In 2020, researchers and youth stakeholders at the Childhood Cerebral Palsy Integrated Neuroscience Discovery Network (CP-NET) came to an agreement that opportunities should exist for youth to empower more youth as research partners. The need for training youth with neurodevelopmental disabilities (NDD) as research partners – active and equal members of the team – was further exemplified by the lack of tailored resources available in Canada (to our knowledge). 

Our team of four youth and one parent with lived experience and six researchers engaged in patient-oriented research (POR) to investigate the following research questions:

1. What are the training needs of youth (ages 18-25) with NDD to enhance their knowledge, confidence, and skills as research partners?
2. What are the benefits and challenges of engaging youth with NDD in a POR approach?

To answer our questions, we conducted individual interviews and focus groups, a two-day virtual symposium, and reflected on our team's POR experience between August 2020 to August 2022. Our team submitted a manuscript in October 2022, which details our qualitative findings on the training needs of youth with NDD and our learnings from engaging in a patient-oriented research team. We have also disseminated our findings at various conferences, as outlined below, where partners and researchers co-presented. We hope to continually raise awareness about the value of youth engagement in research and explore ways to co-train youth and researchers in the future.

Student Investigator:

​Samantha (Yimeng) Dong
 
Co-Supervisor:

Dr. Jan Willem Gorter
Dr. Linda Nguyen
 
Co-Investigators:

Dr. Andrea Cross
Amanda Doherty-Kirby
Jessica Geboers
Dayle McCauley
Alice Kelen Soper
Amanda St. Dennis
Danny Steeves
Natasha Trehan

Dong SY, Nguyen L, Cross A, Doherty-Kirby A, Geboers J*, McCauley D, Soper AK, St. Dennis A*, Steeves D, Trehan N, & Gorter JW. “Nothing About Us Without Us”: Strategies for Equitable and Meaningful Youth Engagement. Kids Brain Health Network Annual Conference 2023. Ottawa, Canada. October 20-24, 2023.

Dong SY*, Nguyen L, Cross A, Doherty-Kirby A, Geboers J*, McCauley D, Soper AK, St. Dennis A*, Steeves D, Trehan N, & Gorter JW. “Nothing About Us Without Us”: Strategies for Equitable and Meaningful Youth Engagement. EKO Spring Symposium 2023. Toronto, Canada. April 12-13, 2023.

Dong SY*, Nguyen L, Cross A, Doherty-Kirby A, Geboers J*, McCauley D, Soper AK, St. Dennis A*, Steeves D*, Trehan N, & Gorter JW.. “Nothing About Us Without Us”: Strategies for Equitable and Meaningful Youth Engagement. Luke's Legacy Family Research Rounds. March 29, 2023.

Dong SY*, Nguyen L, Cross A, Doherty-Kirby A, Geboers J, McCauley D, Soper AK, St. Dennis A*, Steeves D, Trehan N, & Gorter JW. Youth Engagement in Research: Exploring Training Needs of Youth with Neurodevelopmental Disabilities. CHILD-BRIGHT Virtual Symposium 2022. December 9, 2022.

Dong SY*, Nguyen L, Cross A, Doherty-Kirby A, Geboers J, McCauley D, Soper AK, St. Dennis A, Steeves D, Trehan N, & Gorter JW. Youth Engagement in Research: Exploring Training Needs of Youth with Neurodevelopmental Disabilities. BHSc Poster Day 2022. McMaster University. Hamilton, Canada. April 13, 2022.

Dong SY*, Nguyen L, Cross A, Doherty-Kirby A, Geboers J, McCauley D, Soper AK, St. Dennis A, Steeves D, Trehan N, & Gorter JW. Youth Engagement in Research: Exploring Training Needs of Youth with Neurodevelopmental Disabilities. McMaster Child Health Research Day 2022. McMaster University. Hamilton, Canada. March 30, 2022. 

Dong SY*, Nguyen L, Cross A, Doherty-Kirby A, Geboers J, McCauley D, Soper AK, St. Dennis A, Steeves D, Trehan N*, & Gorter JW. Youth Engagement in Research: Exploring Training Needs of Youth with Neurodevelopmental Disabilities. Children’s Healthcare Canada Annual Conference. November 23, 2021.

Dong SY*, Nguyen L, Cross A, Doherty-Kirby A, Geboers J, McCauley D, Soper AK, St. Dennis A*, Steeves D, Trehan N, & Gorter JW. Youth Engagement in Research: Exploring Training Needs of Youth with Neurodevelopmental Disabilities. Annual CP-Net Science and Family Day. October 23, 2021.

*Presented on behalf of the team

If you have any questions about the project, please contact Dayle McCauley.

CHILD-BRIGHT Network Training Innovation Fund

Mitacs Research Training Award

Childhood Cerebral Palsy Integrated Neuroscience Discovery Network (CP-NET)