Deeper inside the Experience of Pediatric Headache: A Narrative Study

Abstract

Objective: To explore meanings, perspectives and points of view of the subjective experience of paediatric patients with headache (PPwH) and create a first-person narrative for clinical practice. Methods: We conducted a qualitative, narrative research study with PPwH, 11 - 17 years old. Data were collected through narratives interviews and a twofold narrative analysis was performed: a narrative and a thematic analysis. Results: Twenty-three patients (14 girls; mean age 14.5; median duration of illness of 5.8 years) were recruited. Through narrative analysis and close reading, narratives revealed different ways to organize illness experience: PPwH can use 1) narrative sequences of recurrent events in order a) to describe the continuing living-through of the experience of headache, b) to define operative script or c) to characterize the illness experience generally as a “controlled” routine; or 2) a storied account of events, with well-defined characters, plot and evaluation of contingency and correlation between events to express a personal point of view and a moral standpoint about the illness experience. Through thematic analysis 5 main themes and 22 subthemes about the significance of being a PPwH emerged: a) disease dimension (description of pain), b) illness dimension, c) sickness, d) causality, e) coping and f) future perception. Then, a first-person narrative story was created as a tool enabling reflection and conversation during clinical consultation. Conclusions: Results suggest that promoting narrative dialogue can be an opportunity for the neurologist: the prototypical narrative developed from story analysis might be a tool to apply for the narrative-based medicine in the clinical setting.