King's College London

The number of children living with life-shortening conditions is increasing and will continue to rise. Parents often take on the role of full-time caregivers, facing fragmented services, lack of support, and struggles to ensure their child’s safety. While children's hospices are growing in number, their role in working with other care providers and supporting families remains unclear.

This project includes four studies:

1) Hospice Integration- We will survey hospices and interview parents and professionals to understand how well hospices work with the wider care system. We will test ways to improve this integration in two hospices.

2) Paediatric Palliative Care- Through workshops and interviews, we will develop a short-term specialist support model for families and test it in two locations.

3) Support for Parent-Carers- We will refine a tool designed to help carers and adapt it for parents. Parent-carers and hospice staff will help improve it, and we will test it in two hospices to see if it meets families’ needs.

4) Support for Siblings- We will identify existing sibling support services, work with young people to assess their effectiveness, and either improve or develop a new service tailored to their needs.