The Internet and End of Life: New report from Demos and The Art of Dying Well

Press Release: The Internet and End of Life

New research from Demos finds that online spaces provide comfort, connection and community to people grieving and people at the end of their life.

The report sets out a vision with a number of recommendations to better integrate online platforms into support around the end of life after the pandemic.

As we emerge from the Covid-19 pandemic, with the need for bereavement support at a critical level, a new report finds that online spaces are a crucial cornerstone of support for people grieving the death of loved ones.

In the first report of its kind, cross-party think tank Demos also found that online spaces are providing valuable access to peer-to-peer support for people at the end of their life, enabling people to communicate with others who have similar experiences to their own. They enable people to speak relatively anonymously to other users, helping to alleviate loneliness, isolation and judgement.

The research collected over 110,000 posts from public online forums where people were discussing issues relating to death, dying and end of life care. It found that online spaces are supporting people in three key ways: providing comfort and validation from others going through similar experiences; enabling users to build their own capabilities, by building their understanding and access to information about end of life; and acting as a space where communities can develop, to support others and be supported themselves.

As important as the emotional and practical support online is, the research also highlights that the current systems within health and care services around the end of life are not working for everyone. Some people feel disempowered, not listened to, and are struggling to navigate the system effectively.

Demos is calling for a better integration of online forums into support around the end of life, through: building presence and awareness of online forums, supporting access to these spaces, and improving practice around end of life care.

The report’s recommendations include:

• Health services and practitioners should continue to develop hybrid models of end of life support post-pandemic, including online, telephone and in-person support, to facilitate greater patient choice and access to a wider diversity of forms of support.
• Government (including DCMS and DHSC) should invest in addressing the digital divide, and support both users and providers to better engage with online services.
• Leading organisations providing support and care at the end of life, those providing online forums, and tech companies should work together with the NHS to create a shared database of online forums supporting people at the end of life, with details about who they are for and how to access them.
• Organisations supporting people at the end of life should ensure there are options tailored to support specific communities at greater risk of exclusion from accessing online services – for instance, people who primarily speak languages other than English.

Ellen Judson, Senior Researcher at Demos and co-author of The Internet and End of Life, said:

“So many people have experienced the death of loved ones over the last year, with a huge rise in deaths due to Covid-19. Our new research shows that online forums across the Internet have been a crucial support network for so many people even before the pandemic, both grieving the loss of loved ones and for people at the end of their life.

“It’s vital that as we emerge from the pandemic, the government and health services formally recognise the untapped potential of online spaces to support people grieving, both from the pandemic, and going forward. Everyone handles grief in their own way, so we must ensure that people are provided with the sufficient support in as many ways as possible. Improving the presence, awareness and access to online spaces will be an essential part of this.”

Read The Internet and End of Life report.

-ENDS-

NOTES TO EDITORS

This research was carried out in partnership with the Centre for the Art of Dying Well, St Mary’s University, Twickenham, and funded by the Plater Trust.

Methodology
Demos collected 116,748 posts from 7 forums: 2 social media, 2 community forums and 3 specialised forums. The dates of the data collected spanned from May 2003 to September 2020 (these dates were across the whole dataset, and data collected from each forum was from a subset of this timeframe). We are not naming the forums for privacy reasons.

Media Contact
Josh Tapper, Communications Officer, Demos
Phone: 07535748224
Email: josh.tapper@demos.co.uk

About Demos
Demos is Britain’s leading cross-party think-tank: an independent, educational charity, which produces original and innovative research.

About The Centre for the Art of Dying Well
The mission of the Art of Dying Well is to offer hope and companionship at the end of life through public engagement; research, policy, and practical companionship.