Narrative Accounts of Youth and Their Mothers With Chronic Headache

Abstract

Objectives: This study was the first to apply a socio-narratology framework to the narratives about child pain as told by youth with chronic pain and their parents, all of whom experience chronic headaches. Background: Storytelling is a powerful social transaction that occurs within systems (eg, families, clinical encounters) and is both shaped by, and can shape, the pain experience. Narrative can be harnessed as a clinical tool to aid in the ability to listen, understand, and improve clinical encounters. Methods: Twenty-six youth (aged 11 to 18 y) and their mothers, both with chronic headaches, recruited from a tertiary level pediatric pain clinic separately completed in-depth interviews about children’s pain journey narratives. Data were analyzed using narrative analysis, which incorporated elements of socio-narratology to compare similarities and differences between and within dyads’ narratives. Results: Five narrative types were generated: (1) The trauma origin story—parents, but not youth, positing traumatic events as the causal link to children’s pain; (2) mistreated by the medical system—neglect, harm, and broken promises resulting in learned hopelessness or relying on the family system; (3) the invalidated—invalidation of pain permeated youth’s lives, with mothers as empathic buffers; (4) washed away by the pain—challenges perceived as insurmountable and letting the pain take over; and (5) taking power back from pain—youth’s ability to live life and accomplish goals despite the pain. Conclusion: Findings support the clinical utility of narrative in pediatric pain, including both parents' and youths' narrative accounts to improve clinical encounters and cocreate more youth-centred, empowering narratives.