How does pain work? A qualitative analysis of how young adults with chronic pain conceptualize the biology of pain

Background: Pain science education (PSE) is commonly integrated into treatments for childhood-onset chronic pain. A core component of PSE is learning about, and often reconceptualizing, the biology of chronic pain. Yet, few interventions have been developed specifically for young adults and little is known about how young adults conceptualize the biology of pain. This study used a qualitative methodology to examine how young adults with childhood-onset chronic pain understand the biology of pain, and the language they use in this meaning-making process, which may inform future interventions tailored to this age group.

Methods: We identified a cohort of young adults with childhood onset chronic pain, and a subset of 17 young adults with continuing chronic pain completed individual, semi-structured interviews. Telephone interviews were audio-recorded, transcribed verbatim and analysed using reflexive thematic analysis.

Results: We generated four themes that capture participants' conceptualizations of the biology of pain: (1) Something is wrong with the body, (2) An injury has not healed, (3) Nerves fire when they should not, (4) An overactive stress system.

Conclusion: These conceptualizations, and the language used by young adults with childhood-onset chronic pain to describe them are discussed. Recommendations are provided for how PSE interventions can be tailored for young adults.

Significance: This study provides new qualitative insights reflecting a variety of ways that young adults with childhood-onset chronic pain conceptualize pain. Some conceptualizations of pain align with modern pain science principles (altered function of nervous and endocrine systems) while others conflict (unhealed injury). Health professionals can use these findings to tailor their pain education interventions by leveraging concepts that 'stick' for youth, being aware of, and interrogating, common misconceptions, and offering language and metaphors familiar to youth.