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.

About the Project

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. We have previously shared our preliminary findings at research conferences, which you can access below. The manuscript has been submitted as of October 2022. Stay tuned for more updates on the Youth Engagement in Research project!

Our Research Team

Student Principal 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


Knowledge Translation to Date

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, 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. 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 email Samantha Dong at dongy58@mcmaster.ca.