When Patients Tell Their Own Stories: A Meta-Narrative Study of Web-Based Personalized Texts of 214 Melanoma Patients’ Journeys in Four Countries


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Abstract

Malignant melanoma is an aggressive, recalcitrant disease. Its impact on people can be compounded by the physical and psychosocial consequences of medical management. Providing melanoma patients with patient-centered care that is effective, safe, and supportive throughout their journey requires knowledge of patients’ progressive experiences and evolving perspectives. With ethical approval, we undertook a meta-narrative study of 214 experiential accounts of melanoma collected from the personal story sections of melanoma and cancer support websites. Using a narrative approach, we qualitatively examined the care experiences represented in these accounts and identified needs for supportive care in a framework reflective of the personal patient journey. We differentiate these across three key periods: lead-up to diagnosis; diagnosis, treatment, and recovery; and posttreatment and recurrence, and provide a visual representation of the patient journey. This article contributes to the growing body of work that utilizes Internet content as sources of qualitative, experiential health care data.

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