Risk factors associated with poorer experiences of end-of-life care and challenges in early bereavement: Results of a national online survey of people bereaved during the COVID-19 pandemic

Selman, L. E., Farnell, D. J. J. ORCID: https://orcid.org/0000-0003-0662-1927, Longo, M. ORCID: https://orcid.org/0000-0002-9867-3806, Goss, S., Seddon, K., Torrens-Burton, A. ORCID: https://orcid.org/0000-0002-2162-3739, Mayland, C. R., Wakefield, D., Johnston, B., Byrne, A. and Harrop, E. ORCID: https://orcid.org/0000-0003-2820-0023 2022. Risk factors associated with poorer experiences of end-of-life care and challenges in early bereavement: Results of a national online survey of people bereaved during the COVID-19 pandemic. Palliative Medicine 36 (4) , pp. 717-729.

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Abstract

Background: Experiences of end-of-life care and early bereavement during the COVID-19 pandemic are poorly understood. Aim: To identify clinical and demographic risk factors for sub-optimal end-of-life care and pandemic-related challenges prior to death and in early bereavement, to inform clinical practice, policy and bereavement support. Design: Online national survey of adults bereaved in the UK (deaths between 16 March 2020 and 2 January 2021), recruited via media, social media, national associations and organisations. Setting/participants: 711 participants, mean age 49.5 (SD 12.9, range 18–90). 628 (88.6%) were female. Mean age of the deceased was 72.2 (SD 16.1, range miscarriage to 102 years). 311 (43.8%) deaths were from confirmed/suspected COVID-19. Results: Deaths in hospital/care home increased the likelihood of poorer experiences at the end of life; for example, being unable to visit or say goodbye as wanted (p < 0.001). COVID-19 was also associated with worse experiences before and after death; for example, feeling unsupported by healthcare professionals (p < 0.001), social isolation/loneliness (OR = 0.439; 95% CI: 0.261–0.739), and limited contact with relatives/friends (OR = 0.465; 95% CI: 0.254–0.852). Expected deaths were associated with a higher likelihood of positive end-of-life care experiences. The deceased being a partner or child also increased the likelihood of positive experiences, however being a bereaved partner strongly increased odds of social isolation/loneliness, for example, OR = 0.092 (95% CI: 0.028–0.297) partner versus distant family member. Conclusions: Four clear risk factors were found for poorer end-of-life care and pandemic-related challenges in bereavement: place, cause and expectedness of death, and relationship to the deceased.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Dentistry Medicine
Additional Information:	This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages
Publisher:	SAGE Publications
ISSN:	0269-2163
Date of First Compliant Deposit:	15 February 2022
Date of Acceptance:	3 January 2022
Last Modified:	04 Jan 2024 08:36
URI:	https://orca.cardiff.ac.uk/id/eprint/147469

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