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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

European journal of cancer care(2020)

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摘要
Objective 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.
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关键词
consensus,Delphi,incurable cancer,longitudinal,qualitative,self-management,self-management support
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