The ENABLE study
Research type
Research Study
Full title
The ENABLE study: Understanding and characterising the value and role of self-management support in people living with cancer that is treatable but not curable\n
IRAS ID
253299
Contact name
Lynn Calman
Contact email
Sponsor organisation
University of Southampton
Duration of Study in the UK
2 years, 5 months, 30 days
Research summary
Supporting people to self-manage health-related problems improves quality of life and reduces health service use. However, most previous research has focussed on people having curative treatment, or people with long term conditions. There is little evidence to tell us the best way to support people to self-manage who are living with cancer that is treatable but not curable (TBNC). Advances in treatment mean more people are living longer with incurable cancer and it is important to look at new ways of supporting them. \n\nAims:\n1. Explore what self-management support means to patients living with cancer that is TBNC, their carers and health care professionals (HCPs). \n2. Understand the roles undertaken by patients, carers and HCPs to support self-management of people living with TBNC cancer and how these change over time. \n3. Identify resources and support needed/used by people to help them manage the impact of TBNC cancer and its treatment. \n4. To identify what the goals of self-management should be from the viewpoint of patients, carers, HCPs and other stakeholders. \n\nStages:\n\nStage One: To investigate aims 1-3, we will interview around 30 patients with TBNC cancer and 30 carers, up to 3 times over the course of a year to see how perspectives change over time. Patients will be recruited to reflect a range of cancer types, treatment status, ages and gender to capture a range of experiences.\nParticipants will be recruited from University Hospital Southampton NHS Foundation Trust and the Christie Hospital NHS Foundation Trust, Manchester.\n\nWe plan to interview about 20 HCPs from a range of professions. \n\nStage 2: To investigate aim 4, we will identify goals and priorities of care from interviews and explore consensus regarding these self-management outcomes of importance. We will ask patients, carers, HCPs and commissioners of care to rank priorities to develop an understanding of consensus or disagreement. \n
REC name
South Central - Hampshire A Research Ethics Committee
REC reference
19/SC/0132
Date of REC Opinion
30 Apr 2019
REC opinion
Further Information Favourable Opinion