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 Mar;29(2):e13217. doi: 10.1111/ecc.13217. Epub 2020 Jan 20.

Abstract

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.

Keywords: Delphi; consensus; incurable cancer; longitudinal; qualitative; self-management; self-management support.

MeSH terms

  • Caregivers*
  • Chronic Disease
  • Delphi Technique
  • Health Personnel
  • Humans
  • Longitudinal Studies
  • Needs Assessment*
  • Neoplasms / therapy*
  • Palliative Care / methods
  • Qualitative Research
  • Role
  • Self-Management / methods*
  • Uncertainty