Background: Melanoma incidence continues to rise worldwide but mortality rates remain stable, meaning ever more patients require support. However, there is currently little research on the support needs of melanoma patients and their carers.
Aim: To explore the experience/support needs of melanoma patients and their carers over time.
Methods: Using a Constructivist Grounded Theory 17 melanoma patients, 11 carers and 11 healthcare professionals (HCPS) were recruited. Concurrent data analysis, theoretical sampling and constant comparison informed a longitudinal, emergent research design capturing experiences over time. Data were collected from patients and carers using interviews and diagramming over 2 years and from HCPs on 2 occasions.
Results: A substantive theory emerged highlighting four key phases in the melanoma experience: pre-diagnosis, diagnosis and initial treatment, surveillance and advanced disease, and for some, death. The overall experience was captured by the metaphor ‘Riding the Rollercoaster’ reflecting the ‘ups’ and ‘downs’ participants experienced at each stage in their ‘roles’, ‘routines’ and ‘relationships’. Changes were mediated by the ways in which patients and carers ‘recognised’ and ‘responded’ to their situation and the ‘resources’ that they could draw upon. Key processes including ‘sharing’ and ‘hiding’ impacted in particular on the ‘relationships’ between patients, carers and HCPs.
