‘It’s there, it’s in front of your face if you put on the radio or the TV’: COVID-19, perceptions of death and dying and the context of public engagement

Llewellyn, Alison; Wilkinson, Clare; McCabe, Candy; Byron, James; Madel, Lou; Wilson, Anne

Abstract

Background/aims:
The COVID-19 pandemic has brought conversations about death and dying to the fore. Prior studies indicate that holding conversations about the future and end of life planning is beneficial but can be very difficult. Therefore, it is important to identify how the pandemic may have affected the conversations people have had, or would want to have, and the potential role of public engagement in that context. The study had two aims: 1) to understand the publics' experiences of participating in conversations about death and dying, and the impact of COVID-19 on those conversations, and 2) to examine the role of public engagement and citizen science in end of life care, death and dying.
Methods:
A scoping review of the health and social sciences literature was conducted to identify relevant citizen science and public engagement projects. Individual semi-structured interviews (n=12) were conducted with public volunteers between June and August 2021 and analysed using thematic coding.
Results:
The qualitative interview data generated nine main themes which included the triggers, barriers, and benefits to conversations about death and dying; and the influence of personal factors, such as age.
Moreover, the impact of Covid-19 in prompting thinking and conversations about death and dying was clear. The predominance of social dialogue around Covid-19 was reported as beneficial in encouraging useful conversations, however sadness was apparent at those conversations that had not been possible in the pandemic. The scoping review identified 33 articles and numerous public engagement projects, but found no evidence of a citizen science project entirely focused on death or dying.
Conclusions:
The role of the Covid-19 pandemic in thinking about death and dying was clearly evidenced. Numerous examples of public engagement activities were also identified. However, both the interview and scoping study data highlight the sensitivity of the subjects, and opportunities and constraints in discussing death and dying openly.

• Presentation Conference Type: Conference Paper (published)
• Conference Name: 12th World Research Congress of the European Association of Palliative Care
• Acceptance Date: May 1, 2022
• Online Publication Date: May 10, 2022
• Publication Date: Jul 1, 2022
• Deposit Date: May 23, 2022
• Journal: Palliative Medicine
• Print ISSN: 0269-2163
• Publisher: SAGE Publications
• Peer Reviewed: Peer Reviewed
• Volume: 36
• Issue: 1 Suppliment
• Pages: 3-122
• DOI: https://doi.org/10.1177/02692163221093145
• Keywords: Palliative Care, Covid-19
• Public URL: https://uwe-repository.worktribe.com/output/9561814
• Publisher URL: https://journals.sagepub.com/doi/10.1177/02692163221093145