How research is helping people grieve in their own way

Bereavement is a complex and very personal experience. Everyone is different, and there’s no single way to grieve – which can make designing resources to support people affected by bereavement a challenge. Through a partnership with Marie Curie and The University of Edinburgh, with support from Cruse Scotland, a new flexible, online support platform for grief – My Grief, My Way – has been produced, guided by research.

Because grief feels different for everyone, there are many kinds of support that people need. For example, 60% of people need no further support outside of their normal environments, dealing with grief with support from their friends and family. At the other end of the scale, 10% of people require professional help.

But the remaining 30% of people need some degree of extra support, often coming from volunteer groups including people going through similar situations.

Funded by Marie Curie, researchers based at the University of Edinburgh identified that these people needed to be able to access good quality bereavement support when they needed it. “We wanted to develop evidence-based support resources that would be flexible, easy to access, and shaped by the views and experiences of people who had been bereaved,” said Dr Anne Finucane, Marie Curie Senior Research Fellow in Clinical Psychology.

My Grief, My Way helps people deal with their grief through a process called Acceptance and Commitment Therapy (ACT). This allows people to develop specific skills such as:

“The ACT skills also help people to step back from their thinking and not let tricky thoughts and feelings get in the way of doing what matters,” said Dr Gillanders. “These skills have been tested with thousands of people across the world and the evidence shows that they help people to deal more effectively with a very wide range of problems.”

To make sure My Grief, My Way was effective for people going through bereavement, the team looked at previous research. They also worked closely with organisations that provide bereavement support, such as Marie Curie and Cruse Scotland.

Another crucial part of creating My Grief, My Way was involving people experiencing grief as they are who the website was designed for.

“Our lived experience group were invaluable,” said Dr Finucane. “They commented on all of the materials for the website, including the videos, worksheets, audio exercises, poetry, imagery and text. We made changes to exercises to make them better culturally informed, we clarified language, and improved navigation.”

The Marie Curie Information & Support team aided in this involvement. People seeking support through our Telephone Bereavement Service and Support Line contributed as test-users, helping the researchers further improve the resource.

Real stories of first-hand grief helped people feel more understood and less alone in their bereavement. They also helped create a sense of community, and many users felt validated when hearing others describe similar experiences to them.

The researchers will now be looking at ways to not only improve My Grief, My Way, but also to make sure people who need it have access to it. This means sharing it directly with people who would benefit from bereavement support, as well as with health and social care professionals and other organisations.

Dr Finucane also revealed they are interested in developing the content for younger people, and encourages people to watch out for future updates.

Dr Anne Finucane, Marie Curie Senior Research Fellow in Clinical Psychology, University of Edinburgh: a.finucane@ed.ac.uk

Dr David Gillanders, Clinical Psychologist and Senior Lecturer in Clinical Psychology at the University of Edinburgh: david.gillanders@ed.ac.uk