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

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.

Place, cause and expectedness of death and relationship to the deceased are associated with poorer experiences of end-of-life care and challenges in early bereavement: Risk factors from an online survey of people bereaved during the COVID-19 pandemic

“…were also particularly impacted by pandemic-related challenges, such as being unable to visit their loved one or say goodbye as they would have liked, limited contact with other relatives or friends, and social isolation and loneliness. This could reflect quarantining requirements after being close to an infected loved one, but also lockdown restrictions, fear and anxiety around social mixing and catching or spreading the virus, and the relationship challenges and sense of alienation associated with COVID-19 bereavement 12,23,24 .…”

Smiles behind the masks: A systematic review and narrative synthesis exploring how family members of seriously ill or dying patients are supported during infectious disease outbreaks

“…Disruptions to rituals before and after death and a lack of social support compounds family members' grief. 44 Thus, the potential for complicated and protracted grief, and other negative psychological consequences for family members are also significant. 1,16,41 When public health and infection control measures remove or limit opportunities for family members to provide support and be comforted by closeness to the patient, and to be supported themselves, the onus is on care providers to find creative and innovative solutions to address family members' needs.…”

An Ethnography Study of a Viral YouTube Educational Video in Ecuador: Dealing With Death and Grief in Times of COVID-19

“…The most important commonalities are the psychological burden associated with confinement (43), the inability to say goodbye or to perform rituals according to believes and culture, and the measures of physical distancing, all of them considered risk factors for traumatic and disenfranchised grief in people with low resistance or resilience (19,35,44,45). Thematic content analysis of Twitter data from bereaved family members and friends (46) or national newspapers (28) has also reported the complexity and difficulty of the current bereavement scenarios.…”

“…Furthermore, the infodemics of the COVID-19 pandemic are also found among healthcare students and professionals (52). Despite these aspects, the analysis of engagement on social media networks and digital newspapers shows that good practices may find a promising scenario for the new native digital generations (46,53,54) and can be even foreseen as a palliative social media (55). The present report supports the emerging studies in this pandemic, showing that goal-directed social networks' engagement in health media and healthcare professionals plays an important role (6,8,51,56).…”