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Research paper thumbnail of The plot thickens: Archetypal narrative structure in the melanoma patient journey

Cogent Medicine , 2018

In this article we present a narrative approach to conceptualizing and representing patients' exp... more In this article we present a narrative approach to conceptualizing and representing patients' experiences of healthcare across a trajectory of care. We empirically investigate, analyze and represent the diagnostic and care trajectories of people with the aggressive skin cancer melanoma, conceiving a model of lived narratives in which the patients are the central characters moving through a longitudinal series of events. Melanoma is a malignant form of skin cancer that makes heavy, long-term demands on patients and healthcare resources. The perspectives of people with melanoma are under-represented in studies of melanoma patient experience. In our study, we make that missing perspective visible. From data collected on the pre-symptom ordinary world of the patient through phases of medical care and into resolution of the initial disease presentation, we identify the thick plot of patients' care experiences in an archetypal narrative form of patient journey. Our findings identify the potential of this analytic framework as a flexible methodology for the reflection of outset-to-outcome melanoma care experiences in healthcare policy and practice.

Research paper thumbnail of "Can I still get a tattoo?" Patients' experiences across the clinical trajectory for metastatic melanoma: a dynamic narrative model of patient journey

Patient Experience Journal, 2019

Advanced and metastatic cancer has a complex diagnostic and management profile that places a heav... more Advanced and metastatic cancer has a complex diagnostic and management profile that places a heavy long-term burden on patients and healthcare systems. Little attention has been given to patients’ experiences across their entire clinical journey. Using a qualitative, longitudinal methodology over a ten-month period, we examined the symptom-to-outcome trajectories of seven people attending a medical oncology clinic at a large, public tertiary referral center in Sydney, Australia. Rather than care being experienced as a largely linear progression through diagnosis, treatment and onto surveillance in which life may return to ‘normal’, participants are embedded in a cyclical clinical pathway. Recurrence or metastases are not a matter of ‘if’ but ‘when’. This model of the patient journey points to a need for longitudinal, person-centered services to support the growing population of people with melanoma.

Research paper thumbnail of The plot thickens: Archetypal narrative structure in the melanoma patient journey

Cogent Medicine , 2018

In this article we present a narrative approach to conceptualizing and representing patients' exp... more In this article we present a narrative approach to conceptualizing and representing patients' experiences of healthcare across a trajectory of care. We empirically investigate, analyze and represent the diagnostic and care trajectories of people with the aggressive skin cancer melanoma, conceiving a model of lived narratives in which the patients are the central characters moving through a longitudinal series of events. Melanoma is a malignant form of skin cancer that makes heavy, long-term demands on patients and healthcare resources. The perspectives of people with melanoma are under-represented in studies of melanoma patient experience. In our study, we make that missing perspective visible. From data collected on the pre-symptom ordinary world of the patient through phases of medical care and into resolution of the initial disease presentation, we identify the thick plot of patients' care experiences in an archetypal narrative form of patient journey. Our findings identify the potential of this analytic framework as a flexible methodology for the reflection of outset-to-outcome melanoma care experiences in healthcare policy and practice.

Research paper thumbnail of "Can I still get a tattoo?" Patients' experiences across the clinical trajectory for metastatic melanoma: a dynamic narrative model of patient journey

Patient Experience Journal, 2019

Advanced and metastatic cancer has a complex diagnostic and management profile that places a heav... more Advanced and metastatic cancer has a complex diagnostic and management profile that places a heavy long-term burden on patients and healthcare systems. Little attention has been given to patients’ experiences across their entire clinical journey. Using a qualitative, longitudinal methodology over a ten-month period, we examined the symptom-to-outcome trajectories of seven people attending a medical oncology clinic at a large, public tertiary referral center in Sydney, Australia. Rather than care being experienced as a largely linear progression through diagnosis, treatment and onto surveillance in which life may return to ‘normal’, participants are embedded in a cyclical clinical pathway. Recurrence or metastases are not a matter of ‘if’ but ‘when’. This model of the patient journey points to a need for longitudinal, person-centered services to support the growing population of people with melanoma.

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