Identifying numbers and needs of children requiring palliative care in Scotland

This report, published by The Department of Health Sciences from the University of York, sets out the findings from an investigation into the numbers of children and young people with life-limiting conditions in Scotland, and what current evidence reveals about their, and their families’, psychosocial 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. Those involved in its development hope that the evidence generated will be a resource to organisations with responsibility for, or delivering services to, children and young people with life-limiting conditions in Scotland. The report was written by Dr Lorna Fraser, Dr Stuart Jarvis, Dr Nicola Moran, Dr Jan Aldridge, Dr Roger Parslow and Professor Bryony Beresford.

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-limiting 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-limiting 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 limiting condition. The remainder are based on the findings from the review of existing evidence. Each recommendation is fully expanded upon in the report. The ten recommendations are as follows:

1. More children and young people of ALL AGES in Scotland with life-limiting conditions should have input from palliative care services.
2. Children under 2 year of age should be seen as a priority group for input from palliative care services.
3. Age specific palliative care services for young people (aged 16 – 25 years) with a life-limiting condition in Scotland should be developed.
4. Palliative care services should be able to provide culturally competent care to children and young people from ALL ethnic groups.
5. Future development of palliative care services in Scotland should ensure that access to services for children and young people from areas of high deprivation is prioritised.
6. Specialist psychological and emotional care should be available to children and young people and all family members. Included in this should be support for couples, and support and guidance to parents as they respond to the emotional needs of their children. Services caring for children and young people with life-limiting conditions should also find ways to provide opportunities for all family members to connect with
   and spend time with their ‘peers’.
7. Palliative care services should consider incorporating domestic support to families within their portfolio of services. They should also seek ways to extend provision of support to parents in order to reduce, or provide a break from, the caring demands and responsibilities placed on parents.
8. Palliative care services in Scotland should continue to include specialist residential provision. This provision should be extended in light of evidence of the size of the population of children with life-limiting conditions living in Scotland.
9. Palliative care services should contribute to, or support activities which seek to, educate and challenge societal perceptions of impairment and disability.
10. Palliative care services, and other services involved in providing care at end of life, should examine current practices with respect to evidence on parents’ psychosocial needs as parents at their child’s end of life.

Click here to read and download the full report.