Development of a research-based classification of approaches to paediatric palliative medicine service provision within children’s and young adults’ hospices: A mixed methods study

Abstract

Background: Globally, pioneers in children’s palliative care influenced this speciality’s development through individual initiatives leading to diverse models of care. Children’s and young adults’ hospices have now been established around the world. However, service provision varies widely leading to inequities both within countries and internationally. Aim: To describe and classify existing approaches to paediatric palliative medicine in children’s and young adults’ hospices across the UK. Design: A mixed methods study conducted by telephone interview. Setting/participants: Thirty-one leaders of children’s hospice care, representing 28 services, 66% of UK children’s and young adults’ hospice organisations. Results: A geographic-specialist classification was developed through integration of findings, enabling hospices to be classified as Regional specialist, Regional non-specialist, Local specialist and Local non-specialist. Both qualitative and quantitative data demonstrated diversity and inequity in paediatric palliative medicine provision. Of 159 doctors (63.5% of whom were general practitioners) working in participating hospices only 27.5% had specialist training in paediatric palliative medicine. The majority of participating hospices (67.9%) did not have involvement from a paediatric palliative medicine consultant. Conclusions: Internationally, the integration of specialist children’s palliative care teams with existing services is a current challenge. Despite differing approaches to children’s palliative care world-wide, models of care which facilitate integration of specialist children’s palliative care could benefit a range of countries and contexts. The geographic-specialist classification could be used to inform recommendations for a networked approach to paediatric palliative medicine within children’s and young adults’ hospices to promote equity for children with life-limiting and life-threatening conditions.