Children in Scotland requiring palliative care: identifying numbers and needs (ChiSP)

The purpose of this project is to identify those children and young people who may be affected with life-limiting conditions and discover what their needs are.

SPRU research team

Bryony Beresford
Nicola Moran

External collaborators

Lorna Fraser, Department of Health Sciences, University of York

Background

Life-limiting conditions (LLC) are defined as health conditions with no reasonable hope of cure and that will ultimately be lead to early death. For children and young people who are affected by these conditions, it is important that palliative care services are available. Dr Lorna Fraser (Health Sciences) and Professor Bryony Beresford (SPRU) have been funded by the Children’s Hospice Association Scotland.

Aim

The purpose of this project is to identify those children and young people who may be affected with life-limiting conditions and discover what their needs are.

Methods

This study has two linked components:

Lorna Fraser will lead on quantitative analyses of healthcare data in Scotland to identify and describe the number of children and young people with LLC, their underlying conditions, and how advanced their conditions are.
Bryony Beresford will lead on a qualitative systematic literature review which will summarise the body of evidence on children’s, young people’s and parents’ views on their care and support needs.

The review will be validated through a series of consultation events and opportunities with families with a child with palliative care needs living in Scotland.

Policy and practice aims

The results of this study will be very important for service planning and resource allocation for paediatric care and hospice services in Scotland. It will help ensure that all children with LLC have equitable access to care. Effective service planning can only be undertaken when the number of patients who require a specific service are known, what their care needs are and the length of time that this service may be needed for is understood.

The ChiSP project will run for 18 months from the 1st of May 2014 and the final results will be presented in a report to Children’s Hospice Association Scotland. There will also be a dissemination event held in Scotland at the end of the project.