Sadness, despair and anger when a patient dies alone from COVID-19: A thematic content analysis of Twitter data from bereaved family members and friends

Lucy E Selman*, Charlotte A Chamberlain, Ryann Sowden, Davina Chao, Daniel Selman, Mark Taubert, Philip Braude

*Corresponding author for this work

Research output: Contribution to journalArticle (Academic Journal)peer-review

11 Citations (Scopus)
37 Downloads (Pure)

Abstract

Background:
To inform clinical practice and policy, it is essential to understand the lived experience of health and social care policies, including restricted visitation policies towards the end of life.

Aim:
To explore the views and experiences of Twitter social media users who reported that a relative, friend or acquaintance died of COVID-19 without a family member/friend present.

Design:
Qualitative content analysis of English-language tweets.

Data sources:
Twitter data collected 7–20th April 2020. A bespoke software system harvested selected publicly-available tweets from the Twitter application programming interface. After filtering we hand-screened tweets to include only those referring to a relative, friend or acquaintance who died alone of COVID-19. Data were analysed using thematic content analysis.

Results:
9328 tweets were hand-screened; 196 were included. Twitter users expressed sadness, despair, hopelessness and anger about their experience and loss. Saying goodbye via video-conferencing technology was viewed ambivalently. Clinicians’ presence during a death was little consolation. Anger, frustration and blame were directed at governments’ inaction/policies or the public. The sadness of not being able to say goodbye as wished was compounded by lack of social support and disrupted after-death rituals. Users expressed a sense of political neglect/mistreatment alongside calls for action. They also used the platform to reinforce public health messages, express condolences and pay tribute.

Conclusion:
Twitter was used for collective mourning and support and to promote public health messaging. End-of-life care providers should facilitate and optimise contact with loved ones, even when strict visitation policies are necessary, and provide proactive bereavement support.
Original languageEnglish
Pages (from-to)1267-1276
Number of pages10
JournalPalliative Medicine
Volume35
Issue number7
Early online date21 May 2021
DOIs
Publication statusPublished - Jul 2021

Bibliographical note

Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: LS and RS are funded by a Career Development Fellowship from the National Institute for Health Research. PB is funded by Research Capability Funding from North Bristol NHS Trust.

Publisher Copyright:
© The Author(s) 2021.

Structured keywords

  • Covid19

Keywords

  • Bereavement
  • Grief
  • Pandemics
  • Coronavirus Infections
  • Social Media

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