The National Youth Advisory Panel (NYAP) & Sibling Youth Advisory Council (SibYAC)’s
10 Tips for Engaging Young People in Research
At the beginning of 2020, CHILD-BRIGHT’s National Youth Advisory Panel (NYAP) published a tip sheet offering a set of eight pieces of advice for researchers looking to engage youth with a lived experience with a brain-based developmental disability in their research.
Later that year, the NYAP had the occasion to co-facilitate a webinar on youth and young adult engagement in patient-oriented research with CanChild’s Sibling Youth Advisory Council (SibYAC). Taking that collaboration a step further, the NYAP and SibYAC created an updated tip sheet listing 10 important considerations for principal investigators, researchers, and project team members to keep in mind when engaging youth and young adults as patient-partners or sibling partners in their projects. Here’s what the members of NYAP and SibYAC recommend.
When engaging youth in research, investigators and research staff are encouraged to:
1. CONSIDER LANGUAGE
Consider the language in which project-related information is available. If necessary, include translations in both English and French so that all youth members understand the project and can engage with the relevant material in their preferred language.
BONUS TIP: Be mindful when using gendered language! Consider using gender-inclusive language. At their meetings, the NYAP & SibYAC members ask for each other's pronouns so that all the youth members feel comfortable.
2. CONSIDER VOCABULARY
Think carefully about the vocabulary used when sharing information related to their research. The youth members recommend research teams use plain language, explain any acronyms, and provide a glossary for easy reference when acronyms are used.
3. Clarify objectives
Provide clear information about the research objectives, explain how the research will be carried out, and clearly state the responsibilities of the youth members involved.
4. Discuss Roles And Interests
Engage youth research team members in a discussion about their interests and roles that they would like to have in a project. Specify the time commitment involved for each role on a project.
BONUS TIP: Use the Involvement Matrix conversation tool to ask young people about the roles they might be interested in.
5. Be Flexible
Be flexible with meeting times and dates in order to accommodate youth members’ schedules and other commitments outside of the Network.
Provide information regarding 1) meeting accessibility (by phone, online or in person), 2) connection (GoToMeeting.com, Skype), and 3) meeting language and translation capacity where needed to ensure all can participate.
BONUS TIP: Provide meeting options during the day and evenings to account for different time zones, when possible.
6. Respect Members' Time
Consider and recognize when it is and isn’t useful or necessary to have youth attend meetings. For example, if the meeting’s agenda deals with budgeting or funding issues, it may be unnecessary to have youth members participate in these discussions.
7. Provide Meeting Materials
Provide youth members with the meeting minutes, agendas, and any other resources a few days in advance. This will help them better prepare for meetings and allow them to use accommodations if necessary.
8. Offer Accommodations
Ask youth members if they need any accommodations (such as translation service or extra time with meeting materials) in order for them to participate in the project.
For questions about accommodations when working with the NYAP, contact CHILD-BRIGHT’s Citizen Engagement Coordinator, Corinne Lalonde.
For questions about the SibYAC, contact CHILD-BRIGHT READYorNot™ Project Graduate Trainee and Research Assistant, Linda Nguyen.
9. Provide Feedback On Youth Impact
Provide youth members with feedback on the impact of their input on the project.
10. Provide Multiple Opportunities for Participation
Ask youth members for their preferred method of participation. Do they prefer attending meetings, or perhaps sharing feedback by email, phone, or Facebook? If possible, share recordings of meetings, conference presentations, or webinars and ask if young people would like to provide feedback based on the recording.