‘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...
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| Veröffentlicht in: | Palliative medicine 2022-01, Vol.36 (1), p.152-160 |
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| container_title | Palliative medicine |
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| creator | Radcliffe, Eloise Khan, Aysha Wright, David Berman, Richard Demain, Sara Foster, Claire Restorick-Banks, Susan Richardson, Alison Wagland, Richard Calman, Lynn |
| description | 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. |
| doi_str_mv | 10.1177/02692163211049497 |
| format | Article |
| fullrecord | <record><control><sourceid>proquest_pubme</sourceid><recordid>TN_cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_8796164</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><sage_id>10.1177_02692163211049497</sage_id><sourcerecordid>2583447623</sourcerecordid><originalsourceid>FETCH-LOGICAL-c466t-ffffca861b2a6dc1490d5c2062363ad9e27285c81a05428ad1df6886808f21533</originalsourceid><addsrcrecordid>eNp1kb1uFDEUhS1ERJbAA9AgSzQ0E_w3tocCKVogrBQpDSA6y-u5s-tofja2Z6N0eQwoeLk8STzZJPwJN5Z1vnN8jy5CLyg5pFSpN4TJilHJGaVEVKJSj9CMCqUKwsm3x2g26cUE7KOnMZ4RQjmR4gna50JKUXI1Qz-vr74vEm4A2oh9ur76EfGFjcn3K3yxtgm2EHDyHeBF1raAV0PCLTQT-RYf4fPRtj7Z5LMU01hf4qHBrd_e-n1a4xTAJrtsAS_HhPvsdmO4fTvbuxxej2GC0xrw_PTr4n1BK7yxfQ2dd8_QXmPbCM_v7gP05eOHz_NPxcnp8WJ-dFK4XCQVTT7OakmXzMraUVGRunSMSMYlt3UFTDFdOk0tKQXTtqZ1I7WWmuiG0ZLzA_Rul7sZlx3UDvoUbGs2wXc2XJrBevOn0vu1WQ1bo1UlqRQ54PVdQBjOR4jJdD46aFvbwzBGw0rNhVB5oIy--gs9G8bQ53qGScaUKCtZZoruKBeGGAM0D8NQYqblm3-Wnz0vf2_x4LjfdgYOd0C0K_j17f8TbwBb1rv3</addsrcrecordid><sourcetype>Open Access Repository</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>2622745965</pqid></control><display><type>article</type><title>‘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</title><source>Applied Social Sciences Index & Abstracts (ASSIA)</source><source>MEDLINE</source><source>SAGE Complete</source><creator>Radcliffe, Eloise ; Khan, Aysha ; Wright, David ; Berman, Richard ; Demain, Sara ; Foster, Claire ; Restorick-Banks, Susan ; Richardson, Alison ; Wagland, Richard ; Calman, Lynn</creator><creatorcontrib>Radcliffe, Eloise ; Khan, Aysha ; Wright, David ; Berman, Richard ; Demain, Sara ; Foster, Claire ; Restorick-Banks, Susan ; Richardson, Alison ; Wagland, Richard ; Calman, Lynn</creatorcontrib><description>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.</description><identifier>ISSN: 0269-2163</identifier><identifier>EISSN: 1477-030X</identifier><identifier>DOI: 10.1177/02692163211049497</identifier><identifier>PMID: 34664537</identifier><language>eng</language><publisher>London, England: SAGE Publications</publisher><subject>Cancer ; Caregivers ; Coronaviruses ; COVID-19 ; Emotional well being ; Health care ; Humans ; Life threatening ; Neoplasms ; Original ; Pandemics ; Qualitative Research ; SARS-CoV-2 ; Selfmanagement ; Teams ; Uncertainty</subject><ispartof>Palliative medicine, 2022-01, Vol.36 (1), p.152-160</ispartof><rights>The Author(s) 2021</rights><rights>The Author(s) 2021 2021 SAGE Publications</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c466t-ffffca861b2a6dc1490d5c2062363ad9e27285c81a05428ad1df6886808f21533</citedby><cites>FETCH-LOGICAL-c466t-ffffca861b2a6dc1490d5c2062363ad9e27285c81a05428ad1df6886808f21533</cites><orcidid>0000-0003-3127-5755 ; 0000-0002-5017-7256</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://journals.sagepub.com/doi/pdf/10.1177/02692163211049497$$EPDF$$P50$$Gsage$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://journals.sagepub.com/doi/10.1177/02692163211049497$$EHTML$$P50$$Gsage$$Hfree_for_read</linktohtml><link.rule.ids>230,314,776,780,881,21798,27901,27902,30976,43597,43598</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/34664537$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Radcliffe, Eloise</creatorcontrib><creatorcontrib>Khan, Aysha</creatorcontrib><creatorcontrib>Wright, David</creatorcontrib><creatorcontrib>Berman, Richard</creatorcontrib><creatorcontrib>Demain, Sara</creatorcontrib><creatorcontrib>Foster, Claire</creatorcontrib><creatorcontrib>Restorick-Banks, Susan</creatorcontrib><creatorcontrib>Richardson, Alison</creatorcontrib><creatorcontrib>Wagland, Richard</creatorcontrib><creatorcontrib>Calman, Lynn</creatorcontrib><title>‘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</title><title>Palliative medicine</title><addtitle>Palliat Med</addtitle><description>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.</description><subject>Cancer</subject><subject>Caregivers</subject><subject>Coronaviruses</subject><subject>COVID-19</subject><subject>Emotional well being</subject><subject>Health care</subject><subject>Humans</subject><subject>Life threatening</subject><subject>Neoplasms</subject><subject>Original</subject><subject>Pandemics</subject><subject>Qualitative Research</subject><subject>SARS-CoV-2</subject><subject>Selfmanagement</subject><subject>Teams</subject><subject>Uncertainty</subject><issn>0269-2163</issn><issn>1477-030X</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2022</creationdate><recordtype>article</recordtype><sourceid>AFRWT</sourceid><sourceid>EIF</sourceid><sourceid>7QJ</sourceid><recordid>eNp1kb1uFDEUhS1ERJbAA9AgSzQ0E_w3tocCKVogrBQpDSA6y-u5s-tofja2Z6N0eQwoeLk8STzZJPwJN5Z1vnN8jy5CLyg5pFSpN4TJilHJGaVEVKJSj9CMCqUKwsm3x2g26cUE7KOnMZ4RQjmR4gna50JKUXI1Qz-vr74vEm4A2oh9ur76EfGFjcn3K3yxtgm2EHDyHeBF1raAV0PCLTQT-RYf4fPRtj7Z5LMU01hf4qHBrd_e-n1a4xTAJrtsAS_HhPvsdmO4fTvbuxxej2GC0xrw_PTr4n1BK7yxfQ2dd8_QXmPbCM_v7gP05eOHz_NPxcnp8WJ-dFK4XCQVTT7OakmXzMraUVGRunSMSMYlt3UFTDFdOk0tKQXTtqZ1I7WWmuiG0ZLzA_Rul7sZlx3UDvoUbGs2wXc2XJrBevOn0vu1WQ1bo1UlqRQ54PVdQBjOR4jJdD46aFvbwzBGw0rNhVB5oIy--gs9G8bQ53qGScaUKCtZZoruKBeGGAM0D8NQYqblm3-Wnz0vf2_x4LjfdgYOd0C0K_j17f8TbwBb1rv3</recordid><startdate>20220101</startdate><enddate>20220101</enddate><creator>Radcliffe, Eloise</creator><creator>Khan, Aysha</creator><creator>Wright, David</creator><creator>Berman, Richard</creator><creator>Demain, Sara</creator><creator>Foster, Claire</creator><creator>Restorick-Banks, Susan</creator><creator>Richardson, Alison</creator><creator>Wagland, Richard</creator><creator>Calman, Lynn</creator><general>SAGE Publications</general><general>Sage Publications Ltd</general><scope>AFRWT</scope><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7QJ</scope><scope>ASE</scope><scope>FPQ</scope><scope>K6X</scope><scope>K9.</scope><scope>NAPCQ</scope><scope>7X8</scope><scope>5PM</scope><orcidid>https://orcid.org/0000-0003-3127-5755</orcidid><orcidid>https://orcid.org/0000-0002-5017-7256</orcidid></search><sort><creationdate>20220101</creationdate><title>‘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</title><author>Radcliffe, Eloise ; Khan, Aysha ; Wright, David ; Berman, Richard ; Demain, Sara ; Foster, Claire ; Restorick-Banks, Susan ; Richardson, Alison ; Wagland, Richard ; Calman, Lynn</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c466t-ffffca861b2a6dc1490d5c2062363ad9e27285c81a05428ad1df6886808f21533</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2022</creationdate><topic>Cancer</topic><topic>Caregivers</topic><topic>Coronaviruses</topic><topic>COVID-19</topic><topic>Emotional well being</topic><topic>Health care</topic><topic>Humans</topic><topic>Life threatening</topic><topic>Neoplasms</topic><topic>Original</topic><topic>Pandemics</topic><topic>Qualitative Research</topic><topic>SARS-CoV-2</topic><topic>Selfmanagement</topic><topic>Teams</topic><topic>Uncertainty</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Radcliffe, Eloise</creatorcontrib><creatorcontrib>Khan, Aysha</creatorcontrib><creatorcontrib>Wright, David</creatorcontrib><creatorcontrib>Berman, Richard</creatorcontrib><creatorcontrib>Demain, Sara</creatorcontrib><creatorcontrib>Foster, Claire</creatorcontrib><creatorcontrib>Restorick-Banks, Susan</creatorcontrib><creatorcontrib>Richardson, Alison</creatorcontrib><creatorcontrib>Wagland, Richard</creatorcontrib><creatorcontrib>Calman, Lynn</creatorcontrib><collection>Sage Journals GOLD Open Access 2024</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>Applied Social Sciences Index & Abstracts (ASSIA)</collection><collection>British Nursing Index</collection><collection>British Nursing Index (BNI) (1985 to Present)</collection><collection>British Nursing Index</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Nursing & Allied Health Premium</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Palliative medicine</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Radcliffe, Eloise</au><au>Khan, Aysha</au><au>Wright, David</au><au>Berman, Richard</au><au>Demain, Sara</au><au>Foster, Claire</au><au>Restorick-Banks, Susan</au><au>Richardson, Alison</au><au>Wagland, Richard</au><au>Calman, Lynn</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>‘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</atitle><jtitle>Palliative medicine</jtitle><addtitle>Palliat Med</addtitle><date>2022-01-01</date><risdate>2022</risdate><volume>36</volume><issue>1</issue><spage>152</spage><epage>160</epage><pages>152-160</pages><issn>0269-2163</issn><eissn>1477-030X</eissn><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.</abstract><cop>London, England</cop><pub>SAGE Publications</pub><pmid>34664537</pmid><doi>10.1177/02692163211049497</doi><tpages>9</tpages><orcidid>https://orcid.org/0000-0003-3127-5755</orcidid><orcidid>https://orcid.org/0000-0002-5017-7256</orcidid><oa>free_for_read</oa></addata></record> |
| fulltext | fulltext |
| identifier | ISSN: 0269-2163 |
| ispartof | Palliative medicine, 2022-01, Vol.36 (1), p.152-160 |
| issn | 0269-2163 1477-030X |
| language | eng |
| recordid | cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_8796164 |
| source | Applied Social Sciences Index & Abstracts (ASSIA); MEDLINE; SAGE Complete |
| subjects | Cancer Caregivers Coronaviruses COVID-19 Emotional well being Health care Humans Life threatening Neoplasms Original Pandemics Qualitative Research SARS-CoV-2 Selfmanagement Teams Uncertainty |
| title | ‘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 |
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