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

In: Selman , L E , Chamberlain , C A , Sowden , R , Chao , D , Selman , D , Taubert , M & Braude , P 2021 , ' 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 ' , Palliative Medicine , vol. 35 , no. 7 , pp. 1267-1276 . https://doi.org/10.1177/02692163211017026

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.