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

Figures & data

Figure 1. Overview of the multiphase study. This study reports on data collected in phase 2, pre-workshop interviews.

Figure 2. Interview questions.

Figure 3. Conceptual representation of the results to show primary relationships between themes. “Understand Me” is the overarching theme representing how the participants’ primary desire is to be better understood. The storm clouds indicate themes that conceptualize the challenges the participants face in their daily lives with chronic pain. The thunder bolts represent how some of the experiences exacerbate others. The theme “knowledge offers hope” is represented as sunshine that can positively impact the youths’ experiences and ultimately result in the youth feeling better understood.

Table 1. Themes, subthemes, codes, and subcodes within overarching theme “understand me.”

Theme (subthemes)	Code (subcode) examples
My unique pain experience	Everybody’s pain is different; my pain (temporal, quality, location, etc.); lack of control
It kind of stops you from living (strained relationships; emotional toll)	Impact on participation (school, leisure, chores, etc.); “normal”; impact on relationships (friends, teachers, parents, etc.); impact on mental health
People don’t know it’s a thing	Lack of knowledge (parents, teachers, friends, etc.); misconceptions; hard to understand; hard to explain; invisible
Knowledge offers hope	Research priorities; helpful resources; positive features of resources; resource gaps