Understand me: Youth with chronic pain on how knowledge gaps influence their pain experience

Background 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.