People living with a terminal illness; their loved ones and carers, and those who have been bereaved are increasingly turning to online spaces for information, help and support. These clearly have benefits for some who use them, but the experience of others can be problematic. Not everyone has the same experience and as yet these spaces are not well understood as a part of supporting people through the end of life and bereavement.
Over the next nine months, in partnership with The Art of Dying Well at St Mary’s University, Twickenham, we will investigate the ways in which internet users are taking to public platforms to discuss death and dying: Where are these discussions taking place? What is the nature and content of the conversations? What specific kinds of help are people seeking: information, advice, solidarity, catharsis, consolation, hope? What is the role of online spaces and online community in supporting people to discuss death and dying? Is this online support being offered by peers, professionals or by both? Are people able to get the support to meet their needs or are there gaps? What do the best online spaces for discussing death and dying look like?
Looking at how online spaces can help those who are dying, those who accompany them, and those who have been bereaved, has taken on a new significance in recent months. Impacts of the COVID-19 pandemic have been a significant shift to online support and tools for people in times of grief, as well as a significant number of people who have been bereaved and unable to grieve in a traditional way through attendance at funerals. We do not fully understand the impact of this on our society yet.
The research will provide an unprecedented understanding of the voices of the dying, those who accompany the dying, and those who have been bereaved. It will contribute to the much-needed debate about how to die well and help improve public policy and practice through a much greater, evidence-based understanding of what those in the last stages of life, and those caring for them, need, and how online spaces can best facilitate healthy communities of support. It has the potential for catalysing new possibilities in accompaniment and support over a long period of time.
For further information about this project, please contact Ellen Judson at ellen.judson@demos.co.uk