About the project
The ENABLE study is an ongoing longitudinal interview study led by the Macmillan Survivorship Research Group, University of Southampton, in collaboration with Christie NHS Foundation Trust. Funded by Macmillan Cancer Support. The study aims to understand and characterise the value and role of supported self-management for patients and carers living with cancer that is treatable but not curable (tbnc) to recommend the best way to support this group
What we did
Between March - May 2020 phone interviews were conducted with a sub set of study participants (12 patients and 9 carers) to understand their experiences during the COVID-19 pandemic.
Patients and carers were recruited from outpatient clinics at a large district general hospital in the South of England and a tertiary cancer centre in the North. Patients had been diagnosed with myeloma, prostate cancer and ovarian cancer. Most patients were receiving active treatment or were in between treatments. Patients and carers were aged 40-78 and the majority were White British. Ten patients were male, and two female and nine of the carers were the patients’ wives.
What we found
1. The experiences of people living with treatable but not curable cancer have changed due to the pandemic
· They wanted to maintain independence, normality and control over their lives, but this had been greatly impacted by the pandemic. Patients and carers had lost opportunities to do the things important to them, e.g. social activities.
· Not being able to see loved ones had a significant impact on patients’ and carers’ emotional well-being. They had increasingly used technology to stay in contact with family and friends. However not all patients and carers had access to, or were able to use, technology for support.
· Patients and carers were experiencing more uncertainty and anxiety as a result of the COVID-19 pandemic.
· Both patients and carers were undergoing a process of adjustment to a ‘new normal’ and had developed strategies, such as maintaining a routine and achieving tasks at home, in response to the significant challenges brought about by the pandemic.
2. Patients continued to feel well supported by their health care teams.
The telephone was an acceptable means of consultation. Some had concerns about the longer-term impact of changes to aspects of their treatment during the pandemic.
3. Patients and carers had concerns about shielding and some were confused about guidance, particularly the risk carers posed to patients’ health when undertaking supportive activities such as shopping and collecting prescriptions.
4. Some carers were experiencing a higher burden of care but had less access to practical, emotional and social support and respite from formal and informal sources.
Suggestions/ implications for policy/ practice
• A very positive finding was that patients continue to feel well-supported by healthcare teams
• We suggest conversations are continued within cancer professions and with the public to acknowledge the impact of the pandemic and develop a response
• We suggest support for people without access to online resources eg. ‘safe areas’ where patients and carers can meet face-to-face with clinical and support staff, provide support to use technology
• We suggest that creative ways are considered to include carers in consultations and that their own health and wellbeing is taken into account
• We recommend support and time for health professionals is needed to prepare for difficult conversations about COVID-19 and its impact on treatment
• We recommend that the experience of those shielding is fed into any new pandemic guidance.
To read the full report on the impact of COVID-19 for people living with cancer that is treatable but not curable cancer please click here.
Carrying out these in-depth interviews at the start of the COVID 19 pandemic to capture the detailed experiences of patients and their family members who were already living and coping with the uncertainty of cancer that is treatable but not curable, was vital. Understanding the challenges for this group who were advised to shield will help service providers and policy-makers to begin to address some of these issues, particularly as the cases of COVID-19 continue to rise again. Getting to know the patients and their family members over time has been one of the most rewarding parts of this research but this has also brought its challenges, particularly when some of the patients’ health has rapidly deteriorated. We are incredibly grateful to participants for sharing their very personal experiences with us. Eloise Radcliffe, ENABLE Research Fellow
Building a rapport with the patients and their families during the course of the study allowed us to continue with interviews over the phone providing support and an opportunity to discuss concerns around their health, COVID-19 and how ultimately life has now changed for them. We are extremely thankful to all the study participants for taking the time to speak to us and share their experiences. Aysha J Khan, ENABLE Research Associate