Are public health measures and individualised care compatible in the face of a pandemic? A national observational study of bereaved relatives' experiences during the COVID-19 pandemic



Mayland, Catriona R ORCID: 0000-0002-1440-9953, Hughes, Rosemary, Lane, Steven, McGlinchey, Tamsin, Donnellan, Warren ORCID: 0000-0002-0224-9155, Bennett, Kate ORCID: 0000-0003-3164-6894, Hanna, Jeffrey, Rapa, Elizabeth, Dalton, Louise and Mason, Stephen R ORCID: 0000-0002-4020-6869
(2021) Are public health measures and individualised care compatible in the face of a pandemic? A national observational study of bereaved relatives' experiences during the COVID-19 pandemic. PALLIATIVE MEDICINE, 35 (8). pp. 1480-1491.

[img] Text
MAIN DOCUMENT RESPONSE TO REVIEWERS MAY2021_CLEAN.docx - Author Accepted Manuscript

Download (45kB)

Abstract

<h4>Background</h4>COVID-19 public health restrictions have affected end-of-life care experiences for dying patients and their families.<h4>Aim</h4>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.<h4>Design</h4>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.<h4>Participants</h4>Individuals (⩾18 years) who had experienced the death of a relative/friend (all care settings) within the United Kingdome during the COVID-19 pandemic.<h4>Results</h4>Respondents (<i>n</i> = 278, mean 53.4 years) tended to be female (<i>n</i> = 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' (<i>n</i> = 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, <i>p</i> = 0.03) and those able to visit (OR 2.2, <i>p</i> = 0.04) were independently associated with good perceptions of family support.<h4>Conclusion</h4>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.

Item Type: Article
Uncontrolled Keywords: COVID-19, survey, end of life, death, bereavement, family, palliative care
Divisions: Faculty of Health and Life Sciences
Faculty of Health and Life Sciences > Clinical Directorate
Faculty of Health and Life Sciences > Institute of Life Courses and Medical Sciences
Faculty of Health and Life Sciences > Institute of Population Health
Faculty of Health and Life Sciences > Institute of Systems, Molecular and Integrative Biology
Depositing User: Symplectic Admin
Date Deposited: 16 Jul 2021 10:53
Last Modified: 18 Jan 2023 21:35
DOI: 10.1177/02692163211019885
Related URLs:
URI: https://livrepository.liverpool.ac.uk/id/eprint/3130264