Narrative Accounts of Youth and their Mothers with Chronic Headache: Application of a socio-narratology framework to pain narratives

Storytelling is a powerful social transaction that occurs within systems (e.g., 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. 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 suffered from chronic headaches. Methods. Twenty-six youth (aged 11-18 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 was analysed 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 the Power Back from Pain- youth’s ability to live life and accomplish goals despite pain. Discussion. Findings support the clinical utility of narrative in pediatric pain, including both parents’ and youth’s narrative accounts to improve clinical encounters and co-create more youth-centred, empowering narratives.