‘It feels it’s wasting whatever time I’ve got left’: A qualitative study of living with treatable but not curable cancer during the COVID-19 pandemic
‘It feels it’s wasting whatever time I’ve got left’: A qualitative study of living with treatable but not curable cancer during the COVID-19 pandemic
Background: People living with cancer that is treatable but not curable have complex needs, often managing health at home, supported by those close to them. Challenges are likely to be exacerbated during the COVID-19 pandemic and the risk-reducing measures introduced in response. The impact of COVID-19 on those living with incurable, life-threatening conditions is little understood. Aim: To investigate the experiences and identify the impact of the COVID-19 pandemic for people living with treatable not curable cancer and their informal carers. Design: Qualitative semi-structured phone interviews were conducted with 21 patients living with cancer that is treatable but not curable and 14 carers. Setting/ participants: Participants were part of a larger longitudinal qualitative study (ENABLE) on supported self-management for people living with cancer that is treatable but not curable. Results: The COVID-19 pandemic magnified uncertainty and anxiety and led to loss of opportunities to do things important to patients in the limited time they have left to live. Lack of face-to-face contact with loved ones had a significant impact on patients’ and carers’ emotional wellbeing. Carers experienced increased responsibilities but less access to formal and informal support and respite. While changes to treatment led to some concern about longer-term impact on health, most patients felt well-supported by healthcare teams. Conclusion: The study provides rich insights into the nature of challenges, uncertainty and lost opportunities resulting from the COVID-19 pandemic for patients and carers living with cancer that is treatable but not curable, which has wider resonance for people living with other life-limiting conditions.
COVID-19, cancer, carers, palliative, qualitative
Radcliffe, Eloise
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Khan, Aysha
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Wright, David
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Berman, Richard
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Demain, Sara
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Foster, Claire
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Restorick-banks, Susan
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Richardson, Alison
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Wagland, Richard
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Calman, Lynn
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Radcliffe, Eloise
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Khan, Aysha
bc08df7d-cce3-4e97-8790-5b986d60f047
Wright, David
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Berman, Richard
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Demain, Sara
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Foster, Claire
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Restorick-banks, Susan
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Richardson, Alison
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Wagland, Richard
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Calman, Lynn
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Radcliffe, Eloise, Khan, Aysha, Wright, David, Berman, Richard, Demain, Sara, Foster, Claire, Restorick-banks, Susan, Richardson, Alison, Wagland, Richard and Calman, Lynn
(2021)
‘It feels it’s wasting whatever time I’ve got left’: A qualitative study of living with treatable but not curable cancer during the COVID-19 pandemic.
Palliative Medicine, [026921632110494].
(doi:10.1177/02692163211049497).
Abstract
Background: People living with cancer that is treatable but not curable have complex needs, often managing health at home, supported by those close to them. Challenges are likely to be exacerbated during the COVID-19 pandemic and the risk-reducing measures introduced in response. The impact of COVID-19 on those living with incurable, life-threatening conditions is little understood. Aim: To investigate the experiences and identify the impact of the COVID-19 pandemic for people living with treatable not curable cancer and their informal carers. Design: Qualitative semi-structured phone interviews were conducted with 21 patients living with cancer that is treatable but not curable and 14 carers. Setting/ participants: Participants were part of a larger longitudinal qualitative study (ENABLE) on supported self-management for people living with cancer that is treatable but not curable. Results: The COVID-19 pandemic magnified uncertainty and anxiety and led to loss of opportunities to do things important to patients in the limited time they have left to live. Lack of face-to-face contact with loved ones had a significant impact on patients’ and carers’ emotional wellbeing. Carers experienced increased responsibilities but less access to formal and informal support and respite. While changes to treatment led to some concern about longer-term impact on health, most patients felt well-supported by healthcare teams. Conclusion: The study provides rich insights into the nature of challenges, uncertainty and lost opportunities resulting from the COVID-19 pandemic for patients and carers living with cancer that is treatable but not curable, which has wider resonance for people living with other life-limiting conditions.
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Accepted/In Press date: 9 September 2021
e-pub ahead of print date: 19 October 2021
Additional Information:
We would like to thank and acknowledge our funder Macmillan Cancer Support, all of our interview participants, our ENABLE patient and carer User Reference Panel and clinical collaborators at University Hospital Southampton NHS Foundation Trust and the Christie NHS Foundation Trust for their valuable contributions.
Professor Alison Richardson is a National Institute for Health Research (NIHR) Senior Investigator. The views expressed in this article are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.
Keywords:
COVID-19, cancer, carers, palliative, qualitative
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Local EPrints ID: 453051
URI: http://eprints.soton.ac.uk/id/eprint/453051
ISSN: 0269-2163
PURE UUID: 49da8fdf-5f26-496e-bd45-91906800feb9
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Date deposited: 07 Jan 2022 17:48
Last modified: 17 Mar 2024 03:27
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Author:
Aysha Khan
Author:
Richard Berman
Author:
Susan Restorick-banks
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