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BACKGROUND: COVID-19 public health restrictions have affected end-of-life care experiences for dying patients and their families. AIM: To explore bereaved relatives' experiences of quality of care and family support provided during the last days of life; to identify the impact of factors associated with perceived support. DESIGN: A national, observational, open online survey was developed and disseminated via social media, public fora and professional networks (June-September 2020). Validated instruments and purposively designed questions assessed experiences. Analysis used descriptive statistics, logistic regression and thematic analysis of free-text responses. PARTICIPANTS: Individuals (⩾18 years) who had experienced the death of a relative/friend (all care settings) within the United Kingdome during the COVID-19 pandemic. RESULTS: Respondents (n = 278, mean 53.4 years) tended to be female (n = 216, 78%); over half were 'son/daughter' (174, 62.6%) to the deceased. Deceased individuals (mean 81.6 years) most frequently died in their 'usual place of care' (n = 192, 69.3%). Analysis established five conceptual themes affecting individualised care: (1) public health restrictions compounding the distress of 'not knowing'; (2) disparate views about support from doctors and nurses; (3) challenges in communication and level of preparedness for the death; (4) delivery of compassionate care; (5) emotional needs and potential impact on grief. Male respondents (OR 2.9, p = 0.03) and those able to visit (OR 2.2, p = 0.04) were independently associated with good perceptions of family support. CONCLUSION: Despite public health restrictions, individualised care can be enabled by proactive, informative communication; recognising dying in a timely manner and facilitating the ability to be present before death.

Original publication

DOI

10.1177/02692163211019885

Type

Journal article

Journal

Palliat Med

Publication Date

31/05/2021

Keywords

COVID-19, bereavement, death, end of life, family, palliative care, survey