Dying during the COVID-19 Pandemic in Sweden : Relatives' Experiences of End-of-Life Care (the CO-LIVE Study)
(2022) In International Journal of Environmental Research and Public Health 19(23).- Abstract
BACKGROUND: The COVID-19 pandemic has seen many deaths, but the majority were for causes other than COVID-19. However, end-of-life care in all settings has been affected by measures limiting the spread of the virus, for patients with and without COVID-19. The Swedish coronavirus strategy was different compared to many other countries, which might have affected end-of-life care. The aim was to describe the experiences of end-of-life care for bereaved relatives in Sweden during the "first wave" and to compare the experiences for deaths due to COVID-19 with the experiences for deaths for other reasons.
METHODS: A random sample of addresses for 2400 people who died during March-September 2020 was retrieved from the Swedish Person... (More)
BACKGROUND: The COVID-19 pandemic has seen many deaths, but the majority were for causes other than COVID-19. However, end-of-life care in all settings has been affected by measures limiting the spread of the virus, for patients with and without COVID-19. The Swedish coronavirus strategy was different compared to many other countries, which might have affected end-of-life care. The aim was to describe the experiences of end-of-life care for bereaved relatives in Sweden during the "first wave" and to compare the experiences for deaths due to COVID-19 with the experiences for deaths for other reasons.
METHODS: A random sample of addresses for 2400 people who died during March-September 2020 was retrieved from the Swedish Person Address Registry. Relatives were contacted with a questionnaire regarding their experience of end-of-life care, with a focus on communication, participation, and trust.
RESULTS: In total, 587 relatives (25% response rate) answered the questionnaire (14% COVID-19-deaths, 65% non-COVID-19-deaths, 21% uncertain). In the COVID-19 group 28% of the relatives were allowed visits without restrictions compared to 60% in the non-COVID-19 group (
p < 0.01). Only 28% of the relatives in the COVID-19 group reported that the person received "enough care from physicians", significantly fewer than the non-COVID group (65%,
p < 0.01).
CONCLUSION: Relatives' experience of end-of-life care for persons with COVID-19 was significantly worse than relatives of persons without COVID-19, but relatives for persons without COVID-19 were also negatively affected.
(Less)
- author
- Hedman, Christel LU ; Fürst, Carl Johan LU ; Rasmussen, Birgit H LU ; van der Heide, Agnes LU and Schelin, Maria E C LU
- organization
- publishing date
- 2022-12-02
- type
- Contribution to journal
- publication status
- published
- subject
- keywords
- Humans, Pandemics, Family, COVID-19/epidemiology, Terminal Care, Hospice Care, Sweden/epidemiology
- in
- International Journal of Environmental Research and Public Health
- volume
- 19
- issue
- 23
- article number
- 16146
- publisher
- MDPI AG
- external identifiers
-
- scopus:85143732277
- pmid:36498221
- ISSN
- 1660-4601
- DOI
- 10.3390/ijerph192316146
- language
- English
- LU publication?
- yes
- id
- 5519e175-9895-4c87-95f3-c46ee5d54a09
- date added to LUP
- 2023-01-23 09:04:53
- date last changed
- 2024-09-19 08:54:06
@article{5519e175-9895-4c87-95f3-c46ee5d54a09, abstract = {{<p>BACKGROUND: The COVID-19 pandemic has seen many deaths, but the majority were for causes other than COVID-19. However, end-of-life care in all settings has been affected by measures limiting the spread of the virus, for patients with and without COVID-19. The Swedish coronavirus strategy was different compared to many other countries, which might have affected end-of-life care. The aim was to describe the experiences of end-of-life care for bereaved relatives in Sweden during the "first wave" and to compare the experiences for deaths due to COVID-19 with the experiences for deaths for other reasons.</p><p>METHODS: A random sample of addresses for 2400 people who died during March-September 2020 was retrieved from the Swedish Person Address Registry. Relatives were contacted with a questionnaire regarding their experience of end-of-life care, with a focus on communication, participation, and trust.</p><p>RESULTS: In total, 587 relatives (25% response rate) answered the questionnaire (14% COVID-19-deaths, 65% non-COVID-19-deaths, 21% uncertain). In the COVID-19 group 28% of the relatives were allowed visits without restrictions compared to 60% in the non-COVID-19 group (<br> p &lt; 0.01). Only 28% of the relatives in the COVID-19 group reported that the person received "enough care from physicians", significantly fewer than the non-COVID group (65%, <br> p &lt; 0.01).<br> </p><p>CONCLUSION: Relatives' experience of end-of-life care for persons with COVID-19 was significantly worse than relatives of persons without COVID-19, but relatives for persons without COVID-19 were also negatively affected.</p>}}, author = {{Hedman, Christel and Fürst, Carl Johan and Rasmussen, Birgit H and van der Heide, Agnes and Schelin, Maria E C}}, issn = {{1660-4601}}, keywords = {{Humans; Pandemics; Family; COVID-19/epidemiology; Terminal Care; Hospice Care; Sweden/epidemiology}}, language = {{eng}}, month = {{12}}, number = {{23}}, publisher = {{MDPI AG}}, series = {{International Journal of Environmental Research and Public Health}}, title = {{Dying during the COVID-19 Pandemic in Sweden : Relatives' Experiences of End-of-Life Care (the CO-LIVE Study)}}, url = {{http://dx.doi.org/10.3390/ijerph192316146}}, doi = {{10.3390/ijerph192316146}}, volume = {{19}}, year = {{2022}}, }