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.

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.

What elements of a systems' approach to bereavement are most effective in times of mass bereavement? A narrative systematic review with lessons for COVID-19.

BACKGROUND: The global COVID-19 pandemic has left health and social care systems facing the challenge of supporting large numbers of bereaved people in difficult and unprecedented social conditions. Previous reviews have not comprehensively synthesised the evidence on the response of health and social care systems to mass bereavement events. AIM: To synthesise the evidence regarding system-level responses to mass bereavement events, including natural and human-made disasters as well as pandemics, to inform service provision and policy during the COVID-19 pandemic and beyond. DESIGN: A rapid systematic review was conducted, with narrative synthesis. The review protocol was registered prospectively (www.crd.york.ac.uk/prospero, CRD 42020180723). DATA SOURCES: MEDLINE, Global Health, PsycINFO and Scopus databases were searched for studies published between 2000 and 2020. Reference lists were screened for further relevant publications, and citation tracking was performed. RESULTS: Six studies were included reporting on system responses to mass bereavement following human-made and natural disasters, involving a range of individual and group-based support initiatives. Positive impacts were reported, but study quality was generally low and reliant on data from retrospective evaluation designs. Key features of service delivery were identified: a proactive outreach approach, centrally organised but locally delivered interventions, event-specific professional competencies and an emphasis on psycho-educational content. CONCLUSION: Despite the limitations in the quantity and quality of the evidence base, consistent messages are identified for bereavement support provision during the pandemic. High quality primary studies are needed to ensure service improvement in the current crisis and to guide future disaster response efforts.

Bereavement Support on the Frontline of COVID-19: Recommendations for Hospital Clinicians.

Deaths due to COVID-19 are associated with risk factors which can lead to prolonged grief disorder, post-traumatic stress, and other poor bereavement outcomes among relatives, as well as moral injury and distress in frontline staff. Here we review relevant research evidence and provide evidence-based recommendations and resources for hospital clinicians to mitigate poor bereavement outcomes and support staff. For relatives, bereavement risk factors include dying in an intensive care unit, severe breathlessness, patient isolation or restricted access, significant patient and family emotional distress, and disruption to relatives' social support networks. Recommendations include advance care planning; proactive, sensitive, and regular communication with family members alongside accurate information provision; enabling family members to say goodbye in person where possible; supporting virtual communication; providing excellent symptom management and emotional and spiritual support; and providing and/or sign-posting to bereavement services. To mitigate effects of this emotionally challenging work on staff, we recommend an organizational and systemic approach which includes access to informal and professional support.