ENABLE: Understanding the importance of self-management support in people living with cancer
Funder
: Macmillan Cancer Support
Chief Investigator : Dr Lynn Calman
Lead Researcher : Dr Eloise Radcliffe
Researcher : Aysha Khan
Co-applicant Team : Dr Lynn Calman, Dr Eloise Radcliffe, Dr Richard Berman , Professor Sara Demain , Mrs Susan Restorick-Banks, Professor Alison Richardson , Dr Richard Wagland , Professor Claire Foster
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.
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If you would like further information on this research please contact the research team on 023 8059 7579 or email [email protected]
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The date, 4 February, is set aside each year to mark World Cancer Day. With COVID-19 prevalent across the globe, we focus on research by the University-based Macmillan Survivor's Research Group
which recently reported on the many changes experienced by cancer patients and their carers which have negatively affected normality, their independence and control of their lives.
The findings are part of ENABLE – an ongoing qualitative study led by the Group working with The Christie NHS Foundation Trust, the University of Plymouth and funded by Macmillan Cancer Support.
The study's overall aim is to understand and characterise the value and role of supported self-management for patients living with cancer that is treatable, but not curable, and their carers.
Participants expressed that since the pandemic began, levels of anxiety and uncertainty had increased with restrictions on seeing loved-ones having a significant impact on the wellbeing of both
patients and carers. Although technology helped, not all had access, and with the inability to attend social and other activities, they had lost opportunities to do the things that were important to them in the
limited time they had left to live. They also found shielding guidance confusing, particularly in relation to patients’ contact with carers, and that a higher burden of care was sometimes placed on carers who
also had less access to support and respite.
However, they said they felt that health care teams continued to support them well, such as with phone consultations, but there was concern about the longer-term impact of changes to aspects of their
treatment, and that routines and tasks at home increased in importance, providing ‘coping strategies’.
The report's authors are already proposing changes in practice to include conversations within cancer professions and with the public to acknowledge the impact of the pandemic and develop a response
with health care professionals given more time to prepare for difficult conversations about COVID-19 and its impact on treatment.
They also recommend that health professionals consider ways to include carers in consultations and for the experience of those shielding to be fed into any new pandemic guidance. ‘Safe areas’,
where patients and carers can meet face-to-face with clinical and support staff, are also proposed – particularly for those with no online access.
Dr Lynn Calman, ENABLE project lead and Deputy Director of the Macmillan Survivorship Research Group commented: “Our study gives us a snapshot and rich insight into the sudden impact of the
COVID-19 pandemic on the lives of cancer patients and their carers. It is crucial that health professionals are able to recognise the effect of the outbreak and develop strategies to help people facing
significant health challenges to improve the quality of their lives.”
Watch our filmed interview with Dr Calman and study patient representative, Susan Restorick-Barnes.