Collaborating with a Youth Council to Improve Chronic Pain Resources

BACKGROUND: There is a recognized need to involve people with lived experience of chronic pain when developing chronic pain resources. AIMS: The aim of this study was to develop, implement, and evaluate a short-term youth council focused on eliciting youths’ recommendations for key features of chronic pain informational resources. METHODS: In this mixed methods instrumental case study, demographic data were collected via Survey Monkey®. Select Patient-Reported Outcomes Measurement Information System® brief measures were used to provide context regarding pain impact within this group. Participants completed an initial interview, which informed youth council workshop delivery. Over two youth council workshops, participants reviewed select informational resources and identified key features of chronic pain resources. Participants evaluated their involvement experience during a second interview. Qualitative data were transcribed and analyzed using directed content analysis. Member-checking occurred during a third workshop, held virtually. RESULTS: Seven youth self-identifying as girl/woman or demi-girl participated. The youth were satisfied with the youth council experience, highlighting the importance of meeting others, a relaxed environment, and participating in valuable work. A list of youth-identified key features for informational resources was created through the workshops, which includes considerations for audience groups, content, and presentation. CONCLUSION: Participants’ input into youth council development and meeting others with lived experience contributed to a safe and supportive involvement experience. Youth council involvement supported the development of preliminary recommendations for chronic pain informational resources.