A new study shows that an app can help parents who are mourning the loss of a child. Parents who used the app for three months reported reduced symptoms of prolonged grief and post-traumatic stress, and also had fewer negative thoughts. Some parents thought the app should be offered early in the mourning process. This is demonstrated in a new study from Uppsala University, published in the scholarly journal Cognitive Behaviour Therapy.

In the acute grief following a death, it is natural for family members to think it feels unreal and difficult to accept that the person who has died will not be coming back. For most people, the intense grief diminishes over time. They can accept the grief, live positively and manage to look ahead. However, some people become stuck in acute grief, a condition known as ‘prolonged grief’.

They may preserve the child’s room as it was or visit the grave very frequently, even several years after the loss. It becomes a kind of ritual and a duty that they cannot escape. We have investigated whether the app can alleviate symptoms of prolonged grief and of depression and post-traumatic stress as well. In the study, we also investigate whether destructive patterns such as rumination and avoidance can be improved in this way.”

Josefin Sveen, Professor of Clinical Psychology and first author of the study

There are several apps based on cognitive behavioural therapy for coping with various mental health problems. A common feature of these apps is that they help the user to normalise thoughts, behaviours and feelings that are natural in the various situations they address.

Based on previous self-help app

In her previous research on the app PTSD Coach, a self-help app for people suffering from PTSD, Sveen discovered that parents whose child has died lack help in managing their grief. She therefore began to develop the new app in the hope that this could help them. Initially, she thought of parents whose child had died of cancer. Later, this group was expanded to include children dying from other causes.

The study involved 248 parents (80 per cent of them mothers). All had lost a child in the last 10 years. Almost half of the children had died of cancer and the average age at the time of death was 11. Participation was entirely voluntary. The participants were contacted by letter and via social media hosted by the Swedish Childhood Cancer Fund and Spädbarnsfonden (the Swedish Infant Death Foundation), which also co-financed the study. Half of the participants received access to the app, the other half had to wait three months before being allowed to use it.

“Grief meter’

The app has four components. Firstly, learning about grief and prolonged grief, and learning to accept grief. Secondly, help in finding support in your surroundings, for example, from friends, relations or colleagues, and easily accessible contact details to support organisations. Thirdly, practical exercises and strategies, including relaxation and help in writing about your grief and your feelings. One exercise involves writing a letter to the child who has died. It can also involve visiting physical places that you have previously avoided, or looking at photos of the child.

The fourth component is a ‘grief meter’ in which the user can rate their own grief and register how strong or weak the feeling of grief has been at different points during the day.

“Many participants thought this was particularly useful. Being able to see that their grief changed from day to day, that there are certain times when it is worst, and that they can feel quite all right in between,” Sveen says. She continues:

“I am glad we have succeeded in producing an app that parents feel helps them. The feedback we received from them was that they appreciated the variety of functions offered by the app – as they described it, it was helpful to have several types of support in just one place. The self-assessments that they made of their health also show that their prolonged grief symptoms declined thanks to the app. Some parents thought that in future, the app should be offered early in the process of mourning.”

Next step young people

The study shows that the app can be a first step in providing information about grief and strategies for managing the challenges that grief brings. The next steps will be, firstly, to follow up the study in a year’s time, and secondly, to conduct a similar study with an app for young people who have lost a parent and/or a sister or brother.