Talking life, talking death

A pilot study of post COVID-19 perceptions of death and dying in the context of citizen and community science

The COVID-19 pandemic has brought conversations about death and dying to the fore in a way not experienced for generations. This raises questions around perceptions of death and dying; the role of healthcare and the community in supporting/organising care; and the use of digital media for tracking information and providing support. This project, funded by UWE Bristol and in collaboration with Dorothy House Hospice, Bath sought to examine some of these conversations and the role for public engagement and citizen science in such contexts. 

Previous studies of death and dying, and the role of hospices/palliative care, have found understanding is mixed. Women and older people are commonly more aware of the role of hospices (Hospice UK, 2017). Hospice care and community support can be difficult for people to map and navigate (Public Health England, 2016). Lack of understanding results in hospice care being underutilised by those who would benefit, leading to calls for increased education and engagement (Shalev et al., 2018). Early conversations about death and dying are deemed helpful in providing care, but are challenging to have. The COVID-19 pandemic may have ramifications for end-of-life (EoL) care, moving focus beyond professional settings, to family and “compassionate communities”, in promoting the wellbeing of dying, caring, and bereaved people (Public Health England, 2016).

In previous research, Dorothy House established that >75% of participants had some awareness/understanding around the role of hospices in EoL care, but only half of these had a conversation about planning for their EoL (Ewing et al., 2018). This project aimed to achieve increased understanding of how we can have ‘courageous conversations about living well and dying well’ by establishing: 

  • how COVID-19 has influenced people’s conversations on death and dying
  • instigating a pilot citizen-science project for further research in this area.

Over the duration of the project (October 2020 – July 2021), we carried out semi-structured interviews with 12 research participants and conducted a scoping study on public engagement focussed on the topic of death and dying, as well as citizen science projects in the context of social science and health research. Initial findings from the project have been presented at a number of conferences and publications are underway. 

The project was led by Dr Clare Wilkinson, Co-Director of the Science Communication Unit with, Professor Candy McCabe and Dr Alison Llewellyn, Centre for Health and Clinical Research (CHCR), and in collaboration with Lou Madel, Business and Strategic Development, and James Byron, Director of Marketing and Engagement, Dorothy House Hospice Care. We would like to thank the Patient and Public Involvement representative who also contributed to this project. 

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