Meta-narratives in the melanoma patient journey: a medical humanities approach to understanding patients' experiences

In the transitioning of healthcare from provider-centred to patient-centred care, the ways patients experience the system, its providers and their own illness has come increasingly into focus. How patients experience healthcare journeys is under-researched. This thesis investigates the nuances and textures of these journeys in the case of patients with the skin cancer melanoma. Melanoma is a disease that is aggressive and recurrent, and its incidence is rising throughout the Western world. The burden on patient populations and the healthcare systems they use is considerable. This thesis asks 'how do people with melanoma experience healthcare from the outset of the disease through to outcome'? Triangulated research was undertaken involving a six-month ethnographic study of seven people with advanced melanoma attending a medical oncology clinic at a public tertiary referral centre in Sydney, Australia and a three-month meta-narrativea nalysis of 214 personal accounts of melanoma published to websites in Australia, New Zealand, the United States and the United Kingdom. The research adopted a narrative view of melanoma patient experience as a phenomenon under study. This view was underscored by the use of narrative methods in data collection, the organisation of the data as a narrative research text, the use of narrative theory in the analysis of the data and the framing of the research findings in a narrative representation of the melanoma patient experience. The findings of the triangulated study were synthesised with what is known about melanoma patients' care experiences from extant, topic-based qualitative studies. This thesis makes an original contribution by identifying, from the patient perspective, issues including: symptom identification and diagnosis of melanoma in the context of comorbid conditions; dissonance between physicians' minimisation of the likelihood of melanoma and a subsequent diagnosis; under-preparation for the physical and psychosocial disruption of diagnostic biopsies and surgical treatments; the impact of long waiting periods for results of BRAF tests; difficulties obtaining information about clinical trials; and unclear expectations about the success of treatment and the likelihood of recurrence. The empirical, methodological and pragmatic contributions of the research include: meta-views of the healthcare journeys that people with melanoma take; archives of detailed patient perspectives on melanoma healthcare journeys; the establishment of a medical humanities approach to investigating patient experience conjoining the precepts of social science research and the heuristics of literary analysis; and information that can be used in policy and practice to manage the healthcare needs of people with melanoma and accommodate the growing burden of the disease on healthcare systems.