by Gillian Backlin
In honour of International Day of Persons with Disabilities, I would like to share my thoughts around the wonderful contributions that children and youth with brain-based developmental disabilities and their families are making at CHILD-BRIGHT and in its research.
CHILD-BRIGHT operates on the principle that true and meaningful youth engagement is central to conducting impactful patient-oriented research. As a result, the network strives to promote youth involvement in many ways, including holding training events such as webinars. Youth engagement is also a central preoccupation of the CHILD-BRIGHT National Youth Advisory Panel (NYAP), of which I am a member.
What does youth engagement look like, exactly, and what are some of its benefits? These are the questions several members of NYAP and members of CanChild’s Sibling Youth Advisory Council (SibYAC) sought to address in a recent webinar, “Learning from Youth: Engagement Strategies for Patient-Oriented Research Projects, Committees, and Councils.” The webinar was a collaborative effort with both the NYAP and the SibYAC; the NYAP members are youth with brain-based developmental disabilities (visit our page to learn more), whereas the SibYAC members are siblings of youth with brain-based developmental disabilities.
I was thrilled to represent NYAP for this webinar. It was the perfect opportunity to demonstrate the impact youth and patient engagement can have on research.
Each webinar facilitator was able to use their own experience and expertise and present on topics such as highlighting types of research where youth involvement is crucial, general engagement strategies and accessibility, considerations, and accommodations. Something that stood out to me was how each webinar facilitator expressed the importance of considering the youth partner’s individuality and preferences when it comes to participation and accommodations; this can include everything from scheduling to using different methods of communication to gather feedback. Since the webinar was well received by participants, the NYAP and CHILD-BRIGHT have ongoing plans to provide more youth and patient engagement-focused content and events. As a youth with a brain-based developmental disability, I could not be more excited about the direction in which we are headed!
In fact, we are continuing the discussion around the ethical aspects of engagement in the next CHILD-BRIGHT virtual event. The upcoming webinar, “Roles and Relationships: Ethical Considerations Related to Involving Children and Parents in Patient-oriented Research”, will be held on December 10. It is open to all and free, so we hope that many people will register!
It is well established at CHILD-BRIGHT that patient and family partners (such as children with a brain-based developmental disability and their parents or caregivers) play an important role in the research process, but what specific ethical considerations need to be taken into account when collaborating with patient-partners? The goal of this webinar is to provide a place for conversation around this topic. We will also highlight some of the unique challenges that are present when implementing patient-oriented research specifically related to patient and family partnership since, unlike research subjects, patient-partners are key collaborators engaged throughout the research process. They help align research to patient and family priorities.
I will be taking part in this conversation as an NYAP member. It is open to all and free, so I hope that you will attend, too!