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
Hauptverfasser: Pauli, Berenike, Strupp, Julia, Schloesser, Karlotta, Voltz, Raymond, Jung, Norma, Leisse, Charlotte, Bausewein, Claudia, Pralong, Anne, Simon, Steffen T
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container_end_page 716
container_issue 4
container_start_page 708
container_title Palliative medicine
container_volume 36
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.
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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 &amp; dying ; Emotional distress ; End of life decisions ; Families &amp; 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. 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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. 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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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