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.

Narrative Medicine to integrate patients’, caregivers’ and clinicians’ migraine experiences: the DRONE multicentre project

“…The NM project “DRONE – Inside the Research: Observatory on Migraine Narratives” aimed to investigate the migraine illness experience by employing the analysis of narratives (a) to understand daily life, real needs and personal resources of migraineurs, their caregivers and clinicians within the evolution of the care pathway, and by doing so (b) providing insights to foster clinical practice as well as migraine knowledge and care. Although other narrative researches concerned the migraine illness experience [ 26 , 27 ], this is the first project to address personal, relational and care aspects of migraine by considering at the same time these three different points of view.…”