The ENABLE study protocol: Understanding and characterising the value and role of self-management support for people living with cancer that is treatable but not curable
AffiliationMacmillan Survivorship Research Group, Faculty of Health Sciences, University of Southampton, Southampton, UK
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AbstractOBJECTIVE: Attention is turning to the needs of people living with treatable but incurable cancer, a group with complex needs, living with uncertainty over time. More research is needed to understand how this group self-manage the impact of cancer to strengthen the evidence base for interventions. This study aims to understand the value and outcomes of self-management support for people living with treatable but incurable cancer. METHODS: Qualitative longitudinal methods will examine how support needs change over time in relation to self-management and unpredictable disease trajectories. Thirty patients and 30 carers will be recruited from two hospitals, each participating in three interviews over 1 year. Patients will be purposively sampled according to age, gender, cancer type and anticipated survival. Carers will be recruited via nomination by patients but interviewed separately. One-off interviews will be conducted with 20 healthcare professionals, providing data from multiple perspectives. Based on interview findings, a modified Delphi process will map areas of consensus and disparity regarding conceptualisations and outcomes of self-management support. CONCLUSION: The key output will be practice recommendations in relation to self-management support, producing evidence to inform service innovation for those living with treatable but incurable cancer.
CitationCalman L, Radcliffe E, Berman R, Demain S, Restorick-Banks S, Richardson A, et al. The ENABLE study protocol: Understanding and characterising the value and role of self-management support for people living with cancer that is treatable but not curable. Eur J Cancer Care (Engl). 2020:e13217.
JournalEuropean Journal of Cancer Care