Dignity reflections based on experiences of end-of-life care during the first wave of the COVID-19 pandemic: A qualitative inquiry among bereaved relatives in the Netherlands (the CO-LIVE study).
COVID-19
dignity
end of life
palliative care
quality of care
Journal
Scandinavian journal of caring sciences
ISSN: 1471-6712
Titre abrégé: Scand J Caring Sci
Pays: Sweden
ID NLM: 8804206
Informations de publication
Date de publication:
Sep 2022
Sep 2022
Historique:
received:
23
05
2021
accepted:
26
09
2021
pubmed:
10
10
2021
medline:
19
8
2022
entrez:
9
10
2021
Statut:
ppublish
Résumé
The COVID-19 pandemic affects care practices for critically ill patients, with or without a COVID-19 infection, and may have affected the experience of dying for patients and their relatives in the physical, psychological, social and spiritual domains. To give insight into aspects of end-of-life care practices that might have jeopardised or supported the dignity of the patients and their family members during the first wave of the COVID-19 pandemic in the Netherlands. A qualitative study involving 25 in-depth interviews with purposively sampled bereaved relatives of patients who died during the COVID-19 pandemic between March and July 2020 in the Netherlands. We created a dignity-inspired framework for analysis, and used the models of Chochinov et al. and Van Gennip et al. as sensitising concepts. These focus on illness-related aspects and the individual, relational and societal/organisational level of dignity. Four themes concerning aspects of end-of-life care practices were identified as possibly jeopardising the dignity of patients or relatives: 'Dealing with an unknown illness', 'Being isolated', 'Restricted farewells' and 'Lack of attentiveness and communication'. The analysis showed that 'Meaningful end-of-life moments' and 'Compassionate professional support' contributed to the dignity of patients and their relatives. This study illuminates possible aspects of end-of-life care practices that jeopardised or supported dignity. Experienced dignity of bereaved relatives was associated with the unfamiliarity of the virus and issues associated with preventive measures. However, most aspects that had an impact on the dignity experiences of relatives were based in human action and relationships. Relatives experienced that preventive measures could be mitigated by health care professionals to make them less devastating.
Sections du résumé
BACKGROUND
BACKGROUND
The COVID-19 pandemic affects care practices for critically ill patients, with or without a COVID-19 infection, and may have affected the experience of dying for patients and their relatives in the physical, psychological, social and spiritual domains.
AIM
OBJECTIVE
To give insight into aspects of end-of-life care practices that might have jeopardised or supported the dignity of the patients and their family members during the first wave of the COVID-19 pandemic in the Netherlands.
METHODOLOGY
METHODS
A qualitative study involving 25 in-depth interviews with purposively sampled bereaved relatives of patients who died during the COVID-19 pandemic between March and July 2020 in the Netherlands. We created a dignity-inspired framework for analysis, and used the models of Chochinov et al. and Van Gennip et al. as sensitising concepts. These focus on illness-related aspects and the individual, relational and societal/organisational level of dignity.
RESULTS
RESULTS
Four themes concerning aspects of end-of-life care practices were identified as possibly jeopardising the dignity of patients or relatives: 'Dealing with an unknown illness', 'Being isolated', 'Restricted farewells' and 'Lack of attentiveness and communication'. The analysis showed that 'Meaningful end-of-life moments' and 'Compassionate professional support' contributed to the dignity of patients and their relatives.
CONCLUSION
CONCLUSIONS
This study illuminates possible aspects of end-of-life care practices that jeopardised or supported dignity. Experienced dignity of bereaved relatives was associated with the unfamiliarity of the virus and issues associated with preventive measures. However, most aspects that had an impact on the dignity experiences of relatives were based in human action and relationships. Relatives experienced that preventive measures could be mitigated by health care professionals to make them less devastating.
Identifiants
pubmed: 34625992
doi: 10.1111/scs.13038
pmc: PMC8661881
doi:
Types de publication
Journal Article
Langues
eng
Pagination
769-781Subventions
Organisme : Netherlands Organisation for Health Research and Development (ZonMw)
ID : 844001803
Informations de copyright
© 2021 The Authors. Scandinavian Journal of Caring Sciences published by John Wiley & Sons Ltd on behalf of Nordic College of Caring Science.
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