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

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.