Children in Scotland requiring palliative care (ChiSP report)

31 Oct 2015

This report sets out the findings from an investigation into the numbers of children and young people with life-shortening conditions in Scotland, and what current evidence tells us about their,and their families’, psychosocial support needs.

This report sets out the findings from an investigation into the numbers of children and young people with life-shortening conditions in Scotland, and what current evidence tells us about their, and their families’ support needs.

The overall purpose of the study was to develop an evidence base to support and inform planning for children’s palliative care in Scotland. It is hoped that the evidence generated will be a resource to organisations with responsibility for, or delivering services to, children and young people with life-shortening conditions.

The objectives of the research were as follows:

  • to identify the number of children and young people with life-shortening or life-threatening conditions in Scotland;
  • to describe this population in terms of their ages, conditions/diagnoses, geographic locations and ethnicity;
  • to generate evidence on their psychosocial care needs.

The study comprised two workstreams.

First, and achieved by a complex process of linking national administrative and health services datasets, an analysis of population level data in order to describe the numbers and characteristics of children and young people with life-shortening or life-threatening conditions in Scotland.

Second, a detailed review of existing international evidence on children and young people’s, parents’ and siblings’ accounts of living with a life-shortening or life-threatening condition, and their perceived psychosocial support needs.

Based on the findings, the research team has made ten recommendations. Five arise from the evidence concerning the numbers of children and young people in Scotland who have a life-shortening condition. The remainder are based on the findings from the review of existing evidence.

Download the ChiSP report(PDF, 953KB)