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‘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
‘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
0269-2163
Radcliffe, Eloise
4bbec31f-dadd-4b7d-95c4-7d96a5ec8659
Khan, Aysha
bc08df7d-cce3-4e97-8790-5b986d60f047
Wright, David
a55be721-4b15-4555-bf61-73fcb75c1a39
Berman, Richard
aeb9631d-c99f-4a40-900f-15669a19870a
Demain, Sara
09b1124d-750a-4eb1-90c7-91f5f222fc31
Foster, Claire
00786ac1-bd47-4aeb-a0e2-40e058695b73
Restorick-banks, Susan
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Richardson, Alison
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Wagland, Richard
16a44dcc-29cd-4797-9af2-41ef87f64d08
Calman, Lynn
9ae254eb-74a7-4906-9eb4-62ad99f058c1
Radcliffe, Eloise
4bbec31f-dadd-4b7d-95c4-7d96a5ec8659
Khan, Aysha
bc08df7d-cce3-4e97-8790-5b986d60f047
Wright, David
a55be721-4b15-4555-bf61-73fcb75c1a39
Berman, Richard
aeb9631d-c99f-4a40-900f-15669a19870a
Demain, Sara
09b1124d-750a-4eb1-90c7-91f5f222fc31
Foster, Claire
00786ac1-bd47-4aeb-a0e2-40e058695b73
Restorick-banks, Susan
1815bd50-8d69-4713-9aea-daaa8bf53bb3
Richardson, Alison
3db30680-aa47-43a5-b54d-62d10ece17b7
Wagland, Richard
16a44dcc-29cd-4797-9af2-41ef87f64d08
Calman, Lynn
9ae254eb-74a7-4906-9eb4-62ad99f058c1

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).

Record type: Article

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

Identifiers

Local EPrints ID: 453051
URI: http://eprints.soton.ac.uk/id/eprint/453051
ISSN: 0269-2163
PURE UUID: 49da8fdf-5f26-496e-bd45-91906800feb9
ORCID for Claire Foster: ORCID iD orcid.org/0000-0002-4703-8378
ORCID for Alison Richardson: ORCID iD orcid.org/0000-0003-3127-5755
ORCID for Richard Wagland: ORCID iD orcid.org/0000-0003-1825-7587
ORCID for Lynn Calman: ORCID iD orcid.org/0000-0002-9964-6017

Catalogue record

Date deposited: 07 Jan 2022 17:48
Last modified: 28 Apr 2022 02:06

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Contributors

Author: Aysha Khan
Author: David Wright
Author: Richard Berman
Author: Sara Demain
Author: Claire Foster ORCID iD
Author: Susan Restorick-banks
Author: Richard Wagland ORCID iD
Author: Lynn Calman ORCID iD

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