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. But these spaces are not well understood, even as the Covid-19 pandemic has made the role of online spaces in supporting people through dying and grief profoundly more urgent.
At Demos, our mission is to bring the public into policymaking, and so we believe listening to these spaces is paramount. Our new research does just this. Analysing over 100,000 posts across 7 online spaces from 2003-2020 where the dying, those who accompany them, and those who have been bereaved come to discuss their experiences, we have gained unprecedented understanding into the support they need and want and how this can best be provided, both online and offline.
Demos and The Centre for the Art of Dying Well held a panel discussion as we launched our final report, The Internet and End of Life. The panel discussed what the future of the relationship between online spaces and support at the end of life ought to be and how government, health services and civil society can work together to bring this about.
The panel was chaired by Margaret Doherty, Director of the Centre for the Art of Dying Well, St Mary’s University.
- Elinor Jayne – Head of Influencing, Sue Ryder
- Ciaran Cummins – Researcher, Centre for the Analysis of Social Media, Demos
- Dominic Carter – Head of Policy and Advocacy, Hospice UK
- Baroness Finlay of Llandaff FMedSci – doctor, professor of palliative medicine, Independent Crossbench member of the House of Lords, and Vice President of Hospice UK and of Marie Curie
The recording of the event is below: