Creating ‘digital memories’ for families of children with life threatening conditions

The funding for Prof Lambert, who is Professor of Children and Family Nursing and Head of School, has been awarded under the HRB's Applied Partnership Awards, which aim to bring knowledge users and researchers together at the start of a project. 

The scheme is part of the HRB's objective of supporting health and social care research that makes a real difference to people's lives and is taking place in partnership with Barretstown. 

"We will work with Barretstown's Children's Charity who deliver recreation therapy to children with palliative care needs in an atmosphere of fun," said Prof. Lambert. 

"This will help us to understand, agree and make any changes needed to use digital storytelling in Ireland, and we will evaluate any potential benefits to families, such as how they connect and communicate, create memories, and prepare for death." 

This research will support children needing palliative care to record their life stories, plan for end-of-life with their families and provide support when the family is bereaved. 

"We will do this by making changes to a way of supporting children to tell their story and record it digitally similarly to how it has been used in the United States," said Prof. Lambert. 

There are a growing number of children in Ireland, and globally, that require palliative care as with better treatment and care, children are surviving longer than they did in the past. 

Currently, in Ireland, there is a lack of support for children with palliative care needs to record their memories and of early bereavement support for their families. 

It is expected that the research collaboration will begin in March or April 2023.