SAIF Golden Charter

Online space for families facing loss

A shared experience can often be the key to dealing with the pain of losing a loved one, and a new web resource aims to foster a network of understanding, sympathy and support for grieving relatives and friends.

With the advent of the Covid pandemic, experienced end-of-life and bereavement researchers at the University of Southampton believed there was a need to create an online resource for families, friends and anyone in their social network to understand and cope with the emotional and practical issues of bereavement.

While the Covid threat has now diminished, the website continues to play a valuable role in helping families deal with the loss of a loved one. Although developed to consider grief collectively, the resource is also useful to support individuals.

The project started in early 2020 after data from NHS England revealed that in ‘normal times’, 60% of people facing bereavement deal with the issue with the help of their families and friends, without professional support. However, that does not mean they do not need help, so the researchers, Dr Natasha Campling, Dr Michelle Myall and Dr Susi Lund, set out to develop an online resource specifically aimed at encouraging families to understand their bereavement and help them support each other.

Dr Campling said: “The Families and Friends in Bereavement resource offers a unique focus on the grief experience of family and social networks rather than the individual and is designed to help families and their friends face loss together, and talk and share their grief.”

This project was initially funded by the National Institute for Health and Care Research Applied Research Collaboration Wessex and later supported by a University Hospital Southampton grant. The web resource was developed because research shows that bereaved people are more likely to experience serious physical and psychological health consequences, such as heart disease, anxiety and depression, particularly in the first year of losing someone close to them.

The web resource includes sections that explain about grief and helps to normalise the range of grief experiences, understand that there is no right or wrong way or set timeframe to grieve, and how to deal with the practicalities. There is also ‘a space to pause’ where relaxing images and music encourage people to take time out, while the website also signposts people to further information and support. As well as this, the website includes activities that help people consider who is in their support network and how they can help each other, prompts to help people start to talk together and questions to help them make sense of their loss.

The research team underpinned the project with two internationally recognised theories: Family Sense of Coherence (FSC) and the Dual Process Model (DPM) of coping with bereavement.

The FSC theory is about how families can cope with stressful events by attending to meaning, comprehensibility and manageability. The family needs to understand what has happened and make sense of what is going on, as well as being able to mobilise their own resources to deal with that.

The DPM takes account of the tasks people need to do to attend to the reality of their loss, and requires them to adapt to the changes that have been enforced by bereavement. People have to ‘bounce’ between those two different tasks to cope with the everyday experience of dealing with the loss and their change in circumstances.

Dr Campling said: “Our research shows that there is real value in drawing on the respective strengths

of people in your ‘family’ network, particularly those who are important to you and who can ‘sit’ alongside you and share your emotions and experiences.”

Dr Lund added: “We received feedback from people who were distressed by bereavement and feared they were getting it wrong. They were slipping between focusing on the loss but also focusing on the change and feeling overwhelmed, but that is normal. So we hope this online resource will empower people to feel they have got some control at a time when they very much feel out of control.”

“It’s about talking and sharing feelings so people can understand the emotions and experiences of others and where they are similar or different to their own. Bereavement can make people fearful of how to approach others – there is often an initial hurdle in starting conversations, so we hope our guidance helps them to get past that initial fear,” said Dr Myall.

However, the website is not designed to replace any form of professional input, such as support that may be required for people experiencing complex or prolonged grief, or who have had a very specific experience, such as a loss through suicide or the death of a child.

As part of their research, the team also involved those from bereavement organisations and non-NHS organisations such as counsellors, clinical psychologists and funeral directors.

Dr Campling said: “Although we originally envisaged the website for the public, we got a great deal of interest from bereavement professionals, so we recognise that it has a value for professionals, including funeral directors.

“Our research showed that the public recognises the essential role that funeral directors play for them. This was brought into sharp relief during Covid when their empathy and understanding, often ‘going above and beyond’, was very much appreciated.

“Hospital services and specialist end-of-life services only often see a small group of those bereaved, while funeral directors reach a wider community during their work, so that’s why we would encourage SAIF members to look at the website and promote it as a valuable source of support for the families they care for.”

If you are interested to find out more about the web resource, contact the research team.