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Patients as story-tellers of healthcare journeys

Abstract

There are gaps in our comprehension of patients' subjective experiences as they engage with and transit through the healthcare environments implicated in their treatment trajectories. Patients' stories, unlike patient experience data gathered in questionnaires and surveys, express the deeply personal, narrative nature of the journeys that patients take, creating opportunities for qualitative healthcare research. Yet narrative capabilities and propensities vary with individuals, and are affected by the stresses of illness and treatment. This article extends the growing interest in narrative competence training for both practitioners and patients with the investigation of a story-telling model that could facilitate patients to narrate their experiences of healthcare systems. This model is derived from the literary arts. In fiction and autobiography, the journey arc of the central character is often one in which he or she is compelled to leave the comfort of everyday life and face a series of extraordinary events involving challenge and change which forces the character towards practical, intellectual, psychological and philosophical adjustments that define, by the end of the story, the character's ‘new normal’. This pattern is known as the ‘hero journey’. Its parallels with patients' experiences of healthcare and the way people narrate their stories of illness have long been recognised. We present here a new idea for applying this model as a narrative structure by which patients may construct their stories about being in and moving through the healthcare system.

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