It’s like standing in front of a prison fence – Dying during the SARS-CoV2 pandemic: A qualitative study of bereaved relatives’ experiences
Background: Since the onset of the SARS CoV2 pandemic, protective and isolation measures had a strong impact on the care and support provided to seriously ill and dying people at the end-of-life. Aim: Exploring bereaved relatives’ experiences of end-of-life care during the SARS-CoV2 pandemic. Design...
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Veröffentlicht in: | Palliative medicine 2022-04, Vol.36 (4), p.708-716 |
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creator | Pauli, Berenike Strupp, Julia Schloesser, Karlotta Voltz, Raymond Jung, Norma Leisse, Charlotte Bausewein, Claudia Pralong, Anne Simon, Steffen T |
description | Background:
Since the onset of the SARS CoV2 pandemic, protective and isolation measures had a strong impact on the care and support provided to seriously ill and dying people at the end-of-life.
Aim:
Exploring bereaved relatives’ experiences of end-of-life care during the SARS-CoV2 pandemic.
Design:
Qualitative interview study with bereaved relatives.
Participants:
Thirty-two relatives of patients who died during the pandemic, regardless of infection with SARS-CoV2.
Results:
Three core categories were identified: needs, burden and best practice. Relatives wished for a contact person responsible for providing information on the medical and mental condition of their family members. The lack of information, of support by others and physical closeness due to the visiting restrictions, as well as not being able to say goodbye, were felt as burdens and led to emotional distress. However, case-by-case decisions were made and creative ways of staying in touch were experienced positively.
Conclusions:
Our results indicate that the strong need for closeness when a family member was dying could not be met due to the pandemic. This led to suffering that can be prevented. Visits need to be facilitated by making considered decisions on a case-by-case basis. For easy communication with relatives, approaches should be made by healthcare professionals and support for virtual communication should be offered. Furthermore, the results of the study can help to implement or develop ideas to enable dignified farewells even during pandemics. |
doi_str_mv | 10.1177/02692163221076355 |
format | Article |
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Since the onset of the SARS CoV2 pandemic, protective and isolation measures had a strong impact on the care and support provided to seriously ill and dying people at the end-of-life.
Aim:
Exploring bereaved relatives’ experiences of end-of-life care during the SARS-CoV2 pandemic.
Design:
Qualitative interview study with bereaved relatives.
Participants:
Thirty-two relatives of patients who died during the pandemic, regardless of infection with SARS-CoV2.
Results:
Three core categories were identified: needs, burden and best practice. Relatives wished for a contact person responsible for providing information on the medical and mental condition of their family members. The lack of information, of support by others and physical closeness due to the visiting restrictions, as well as not being able to say goodbye, were felt as burdens and led to emotional distress. However, case-by-case decisions were made and creative ways of staying in touch were experienced positively.
Conclusions:
Our results indicate that the strong need for closeness when a family member was dying could not be met due to the pandemic. This led to suffering that can be prevented. Visits need to be facilitated by making considered decisions on a case-by-case basis. For easy communication with relatives, approaches should be made by healthcare professionals and support for virtual communication should be offered. Furthermore, the results of the study can help to implement or develop ideas to enable dignified farewells even during pandemics.</description><identifier>ISSN: 0269-2163</identifier><identifier>EISSN: 1477-030X</identifier><identifier>DOI: 10.1177/02692163221076355</identifier><identifier>PMID: 35350933</identifier><language>eng</language><publisher>London, England: SAGE Publications</publisher><subject>Bereavement ; Best practice ; Closeness ; Communication ; COVID-19 ; Death & dying ; Emotional distress ; End of life decisions ; Families & family life ; Family ; Health care ; Hospice care ; Humans ; Medical personnel ; Pandemics ; Prisons ; Psychological distress ; Qualitative Research ; Relatives ; RNA, Viral ; SARS-CoV-2 ; Severe acute respiratory syndrome ; Severe acute respiratory syndrome coronavirus 2</subject><ispartof>Palliative medicine, 2022-04, Vol.36 (4), p.708-716</ispartof><rights>The Author(s) 2022</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c298t-e85cc226fa38f99977222950a7457f9778616fc83c9beea830678e4aeb3d526b3</citedby><cites>FETCH-LOGICAL-c298t-e85cc226fa38f99977222950a7457f9778616fc83c9beea830678e4aeb3d526b3</cites><orcidid>0000-0002-4209-6659</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://journals.sagepub.com/doi/pdf/10.1177/02692163221076355$$EPDF$$P50$$Gsage$$H</linktopdf><linktohtml>$$Uhttps://journals.sagepub.com/doi/10.1177/02692163221076355$$EHTML$$P50$$Gsage$$H</linktohtml><link.rule.ids>314,780,784,21819,27924,27925,30999,43621,43622</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/35350933$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Pauli, Berenike</creatorcontrib><creatorcontrib>Strupp, Julia</creatorcontrib><creatorcontrib>Schloesser, Karlotta</creatorcontrib><creatorcontrib>Voltz, Raymond</creatorcontrib><creatorcontrib>Jung, Norma</creatorcontrib><creatorcontrib>Leisse, Charlotte</creatorcontrib><creatorcontrib>Bausewein, Claudia</creatorcontrib><creatorcontrib>Pralong, Anne</creatorcontrib><creatorcontrib>Simon, Steffen T</creatorcontrib><creatorcontrib>PallPan consortium</creatorcontrib><creatorcontrib>for the PallPan consortium</creatorcontrib><title>It’s like standing in front of a prison fence – Dying during the SARS-CoV2 pandemic: A qualitative study of bereaved relatives’ experiences</title><title>Palliative medicine</title><addtitle>Palliat Med</addtitle><description>Background:
Since the onset of the SARS CoV2 pandemic, protective and isolation measures had a strong impact on the care and support provided to seriously ill and dying people at the end-of-life.
Aim:
Exploring bereaved relatives’ experiences of end-of-life care during the SARS-CoV2 pandemic.
Design:
Qualitative interview study with bereaved relatives.
Participants:
Thirty-two relatives of patients who died during the pandemic, regardless of infection with SARS-CoV2.
Results:
Three core categories were identified: needs, burden and best practice. Relatives wished for a contact person responsible for providing information on the medical and mental condition of their family members. The lack of information, of support by others and physical closeness due to the visiting restrictions, as well as not being able to say goodbye, were felt as burdens and led to emotional distress. However, case-by-case decisions were made and creative ways of staying in touch were experienced positively.
Conclusions:
Our results indicate that the strong need for closeness when a family member was dying could not be met due to the pandemic. This led to suffering that can be prevented. Visits need to be facilitated by making considered decisions on a case-by-case basis. For easy communication with relatives, approaches should be made by healthcare professionals and support for virtual communication should be offered. Furthermore, the results of the study can help to implement or develop ideas to enable dignified farewells even during pandemics.</description><subject>Bereavement</subject><subject>Best practice</subject><subject>Closeness</subject><subject>Communication</subject><subject>COVID-19</subject><subject>Death & dying</subject><subject>Emotional distress</subject><subject>End of life decisions</subject><subject>Families & family life</subject><subject>Family</subject><subject>Health care</subject><subject>Hospice care</subject><subject>Humans</subject><subject>Medical personnel</subject><subject>Pandemics</subject><subject>Prisons</subject><subject>Psychological distress</subject><subject>Qualitative Research</subject><subject>Relatives</subject><subject>RNA, Viral</subject><subject>SARS-CoV-2</subject><subject>Severe acute respiratory syndrome</subject><subject>Severe acute respiratory syndrome coronavirus 2</subject><issn>0269-2163</issn><issn>1477-030X</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2022</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>7QJ</sourceid><recordid>eNp1kc1u1DAUhS0EotOBB2BTWWLDJsU_sR2zGw1tqTRSJQqIXeQ4N61LJpmxk1FnN69QseL1-iTYTAsSiNWVfb97zrUPQq8oOaZUqbeESc2o5IxRoiQX4gma0FypjHDy9SmapH6WgAN0GMINIZQTmT9HB1xwQTTnE3R3PtzvfgTcum-Aw2C62nVX2HW48X034L7BBq-8C328gc4Cvt99x--3CapHn8pwDfhy9vEym_dfGF5FBVg6-w7P8Ho0rRvM4DZJeqy3Sa4CD2YDNfbQ_mqF6I_hdgXeJYPwAj1rTBvg5UOdos-nJ5_mH7LFxdn5fLbILNPFkEEhrGVMNoYXjdZaKcaYFsSoXKgmHgtJZWMLbnUFYIr4clVAbqDitWCy4lP0Zq-78v16hDCUSxcstK3poB9DyWQuckW0YBF9_Rd604--i9slSguqKOGRonvK-j4ED00ZP25p_LakpEx5lf_kFWeOHpTHagn174nHgCJwvAeCuYI_tv9X_AmQaJ86</recordid><startdate>202204</startdate><enddate>202204</enddate><creator>Pauli, Berenike</creator><creator>Strupp, Julia</creator><creator>Schloesser, Karlotta</creator><creator>Voltz, Raymond</creator><creator>Jung, Norma</creator><creator>Leisse, Charlotte</creator><creator>Bausewein, Claudia</creator><creator>Pralong, Anne</creator><creator>Simon, Steffen T</creator><general>SAGE Publications</general><general>Sage Publications Ltd</general><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><orcidid>https://orcid.org/0000-0002-4209-6659</orcidid></search><sort><creationdate>202204</creationdate><title>It’s like standing in front of a prison fence – Dying during the SARS-CoV2 pandemic: A qualitative study of bereaved relatives’ experiences</title><author>Pauli, Berenike ; Strupp, Julia ; Schloesser, Karlotta ; Voltz, Raymond ; Jung, Norma ; Leisse, Charlotte ; Bausewein, Claudia ; Pralong, Anne ; Simon, Steffen T</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c298t-e85cc226fa38f99977222950a7457f9778616fc83c9beea830678e4aeb3d526b3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2022</creationdate><topic>Bereavement</topic><topic>Best practice</topic><topic>Closeness</topic><topic>Communication</topic><topic>COVID-19</topic><topic>Death & dying</topic><topic>Emotional distress</topic><topic>End of life decisions</topic><topic>Families & family life</topic><topic>Family</topic><topic>Health care</topic><topic>Hospice care</topic><topic>Humans</topic><topic>Medical personnel</topic><topic>Pandemics</topic><topic>Prisons</topic><topic>Psychological distress</topic><topic>Qualitative Research</topic><topic>Relatives</topic><topic>RNA, Viral</topic><topic>SARS-CoV-2</topic><topic>Severe acute respiratory syndrome</topic><topic>Severe acute respiratory syndrome coronavirus 2</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Pauli, Berenike</creatorcontrib><creatorcontrib>Strupp, Julia</creatorcontrib><creatorcontrib>Schloesser, Karlotta</creatorcontrib><creatorcontrib>Voltz, Raymond</creatorcontrib><creatorcontrib>Jung, Norma</creatorcontrib><creatorcontrib>Leisse, Charlotte</creatorcontrib><creatorcontrib>Bausewein, Claudia</creatorcontrib><creatorcontrib>Pralong, Anne</creatorcontrib><creatorcontrib>Simon, Steffen T</creatorcontrib><creatorcontrib>PallPan consortium</creatorcontrib><creatorcontrib>for the PallPan consortium</creatorcontrib><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><jtitle>Palliative medicine</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Pauli, Berenike</au><au>Strupp, Julia</au><au>Schloesser, Karlotta</au><au>Voltz, Raymond</au><au>Jung, Norma</au><au>Leisse, Charlotte</au><au>Bausewein, Claudia</au><au>Pralong, Anne</au><au>Simon, Steffen T</au><aucorp>PallPan consortium</aucorp><aucorp>for the PallPan consortium</aucorp><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>It’s like standing in front of a prison fence – Dying during the SARS-CoV2 pandemic: A qualitative study of bereaved relatives’ experiences</atitle><jtitle>Palliative medicine</jtitle><addtitle>Palliat Med</addtitle><date>2022-04</date><risdate>2022</risdate><volume>36</volume><issue>4</issue><spage>708</spage><epage>716</epage><pages>708-716</pages><issn>0269-2163</issn><eissn>1477-030X</eissn><abstract>Background:
Since the onset of the SARS CoV2 pandemic, protective and isolation measures had a strong impact on the care and support provided to seriously ill and dying people at the end-of-life.
Aim:
Exploring bereaved relatives’ experiences of end-of-life care during the SARS-CoV2 pandemic.
Design:
Qualitative interview study with bereaved relatives.
Participants:
Thirty-two relatives of patients who died during the pandemic, regardless of infection with SARS-CoV2.
Results:
Three core categories were identified: needs, burden and best practice. Relatives wished for a contact person responsible for providing information on the medical and mental condition of their family members. The lack of information, of support by others and physical closeness due to the visiting restrictions, as well as not being able to say goodbye, were felt as burdens and led to emotional distress. However, case-by-case decisions were made and creative ways of staying in touch were experienced positively.
Conclusions:
Our results indicate that the strong need for closeness when a family member was dying could not be met due to the pandemic. This led to suffering that can be prevented. Visits need to be facilitated by making considered decisions on a case-by-case basis. For easy communication with relatives, approaches should be made by healthcare professionals and support for virtual communication should be offered. Furthermore, the results of the study can help to implement or develop ideas to enable dignified farewells even during pandemics.</abstract><cop>London, England</cop><pub>SAGE Publications</pub><pmid>35350933</pmid><doi>10.1177/02692163221076355</doi><tpages>9</tpages><orcidid>https://orcid.org/0000-0002-4209-6659</orcidid></addata></record> |
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ispartof | Palliative medicine, 2022-04, Vol.36 (4), p.708-716 |
issn | 0269-2163 1477-030X |
language | eng |
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source | MEDLINE; Applied Social Sciences Index & Abstracts (ASSIA); SAGE Complete A-Z List |
subjects | Bereavement Best practice Closeness Communication COVID-19 Death & dying Emotional distress End of life decisions Families & family life Family Health care Hospice care Humans Medical personnel Pandemics Prisons Psychological distress Qualitative Research Relatives RNA, Viral SARS-CoV-2 Severe acute respiratory syndrome Severe acute respiratory syndrome coronavirus 2 |
title | It’s like standing in front of a prison fence – Dying during the SARS-CoV2 pandemic: A qualitative study of bereaved relatives’ experiences |
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