ENABLE: Understanding and characterising supported self-management in the context of cancer which cannot be cured.

Advances in treatment, such as immunotherapy, have impacted on survival of people living with advanced cancer. It is important to look for new ways to support patients and carers living with this uncertainty. We need this study to understand how patients can be supported to self-manage the impact of cancer and treatment and identify what impact this has on wellbeing. This study aims to understand and characterise the value and role of supported self-management for patients and carers living with cancer.

Longitudinal interviews will be used to explore how perspectives, strategies and needs change over time in relation to self-management and unpredictable illness trajectories. Up to 30 patients and 30 carers will be recruited from one hospital in the South of England and one in the North, to each participate in three qualitative interviews over one year. Carers will be recruited through patients but interviewed separately. One-off interviews will also be carried out with up to 20 health care professionals from a range of professions to provide insights from multiple perspectives.

Based on the interview findings, a national consensus exercise will be conducted with stakeholder groups of patients, carers, health care professionals and commissioners to identify, explore and map areas of consensus regarding self-management outcomes of importance and to identify relevant outcome measures. The key output will be the development of practice recommendations to better address patient and carer need in relation to supported self-management.

If you would like further information on this research please contact the research team on l.calman@soton.ac.uk

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