Debbie Jacobs
20 Apr 2026
Improving the support and care available to children with life limiting conditions and their families.
Dr Bethan Page, Professor Lorna Fraser and team have started recruitment for this exciting new project as part of the Centre of Excellence in Children's Palliative Care at King's College, London, which is funded by Kentown Support.
This project will help build an evidence base to improve the support and care available to children with life-limiting conditions and their families.
Caring for a child with a life-limiting condition can have wide-ranging impacts on children and families, including housing, family finances and parental and sibling health and wellbeing. Despite this, there has been very little research focused on social care for this group of children.
The aim of this research is to understand families’ and professionals’ priorities and recommendations for improving social care for children with life-limiting conditions.
The project will involve:
Part 1: Interviewing parents of children with life-limiting conditions about their experiences of accessing or receiving support for their social care needs.
Part 2: conducting focus groups with professionals who are involved in meeting the social care needs of children with life-limiting conditions and their families.
Part 3: Running workshops with parents and professionals, where findings from the interviews and focus groups will be shared and participants will jointly prioritise key areas for future research and intervention development.
Please consider taking part if you are a parent or legal guardian who is 18 yrs old or greater (inclusive of bereaved parents), you have a child who had a life-limiting diagnosis, and your child is younger than 18 years old (or died when younger than 18 years old).
If you are a Professional, please consider taking part if you have a role in meeting the social care needs of children with life-limiting conditions. You could be a disability social worker, a family support worker, an occupational therapist, a community children’s nurse, a school nurses at a special educational needs school or a Local Authority professional involved in Direct Payments and the Disabled Facilities Grant.
If you are interested in taking part or would like more information, please email: kentownresearchstudy@kcl.ac.uk