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ABSTRACTBackground 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.

ABSTRACTBackground There is a perceived lack of readily available resources to support self-management skills in youth living with chronic pain. The perspectives of youth regarding information gaps may improve the effectiveness of resources developed for them.Aim The aim of this study was to explore the perspectives of youth living with chronic pain on the interactions among their pain experiences, chronic pain resources and research.Methods Using an interpretive paradigm, we interviewed seven participants (age range 12–19 years) diagnosed with chronic pain. Two frameworks for meaningful engagement of citizens in research and policy informed the interview guide. Data were analyzed inductively using content analysis approaches to examine patterns and develop themes.Results The participants’ perceptions were captured by the overarching theme of “understand me.” Four subthemes elaborate on the relationship between the participants’ experiences and how their lives could be enhanced through research and knowledge mobilization. In the subtheme “my unique pain experience,” the participants help us understand them by chronicling the variation in presentation of their chronic pain. The subtheme “people don’t know it’s a thing” emphasizes that there is general misunderstanding of chronic pain by the public and in the participants’ support systems. The first two subthemes influence the third, which describes how the pain “kind of stops you from living.” The fourth subtheme, “knowledge offers hope,” offers a solution to dismantling misunderstanding of youth living with chronic pain.Conclusion Future work needs to focus on embedding health literacy and knowledge mobilization into health and education structures to promote developmentally relevant self-management skills.