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Children in Scotland requiring Palliative Care: identifying numbers and needs (ChiSP Study)

Life-limiting conditions (LLC) are defined as health conditions with no reasonable hope of cure and that will ultimately 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 successfully won a £107K grant through the Children’s Hospice Association Scotland to identify those children and young people who may be affected with these conditions and their needs.

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

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 a more 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.