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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, Lucy Ellen; Farnell, Djj; Longo, M; Goss, S; Seddon, K; Torrens-Burton, A; Mayland, C R; Wakefield, D; Johnston, B; Byrne, A; Harrop, E.
  • Selman LE; Palliative and End of Life Care Research Group, Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK.
  • Farnell D; School of Dentistry, Cardiff University, Cardiff, UK.
  • Longo M; Marie Curie Research Centre, Cardiff University, Cardiff, UK.
  • Goss S; Marie Curie Research Centre, Cardiff University, Cardiff, UK.
  • Seddon K; Wales Cancer Research Centre, Cardiff, UK.
  • Torrens-Burton A; Marie Curie Research Centre, Cardiff University, Cardiff, UK.
  • Mayland CR; Department of Oncology and Metabolism, University of Sheffield, Sheffield, UK.
  • Wakefield D; North Tees and Hartlepool NHS Foundation Trust, Stockton-on-Tees, UK.
  • Johnston B; School of Medicine, Dentistry and Nursing, University of Glasgow, Glasgow, UK.
  • Byrne A; Marie Curie Research Centre, Cardiff University, Cardiff, UK.
  • Harrop E; Marie Curie Research Centre, Cardiff University, Cardiff, UK.
Palliat Med ; 36(4): 717-729, 2022 04.
Article in English | MEDLINE | ID: covidwho-1701285
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.
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Full text: Available Collection: International databases Database: MEDLINE Main subject: Terminal Care / Bereavement / COVID-19 Type of study: Experimental Studies / Observational study / Prognostic study / Qualitative research Limits: Adult / Child / Female / Humans / Middle aged Language: English Journal: Palliat Med Journal subject: Health Services Year: 2022 Document Type: Article Affiliation country: 02692163221074876

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Full text: Available Collection: International databases Database: MEDLINE Main subject: Terminal Care / Bereavement / COVID-19 Type of study: Experimental Studies / Observational study / Prognostic study / Qualitative research Limits: Adult / Child / Female / Humans / Middle aged Language: English Journal: Palliat Med Journal subject: Health Services Year: 2022 Document Type: Article Affiliation country: 02692163221074876