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

• Published in: Palliative medicine 2021-07, Vol.35 (7), p.1267-1276
• Main Authors: Selman, Lucy E, Chamberlain, Charlotte, Sowden, Ryann, Chao, Davina, Selman, Daniel, Taubert, Mark, Braude, Philip
• Format: Article
• Language: English
• Subjects: Acquaintances; Anger; Application programming interface; Bereavement; Blame; Clinical medicine; Content analysis; Coronaviruses; COVID-19; Death & dying; Death rituals; End of life decisions; Friendship; Frustration; Health care; Hopelessness; Hospice care; Medical personnel; Mourning; Original; Public health; Rituals; Sadness; Social media; Social networks; Social support; Technology; Video conferencing
• ISSN: 0269-2163; 1477-030X
• DOI: 10.1177/02692163211017026

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.