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  • Andrew Papworth
    University of York
  • Julia Hackett
    University of York
  • Bryony Beresford
    University of York
  • Fliss Murtagh
    University of Hull
  • Helen Weatherly
    University of York
  • Sebastian Hinde
    University of York
  • Andre Bedendo
    University of York
  • Gabriella Walker
  • Jane Noyes
  • Sam Oddie
    Bradford Hospitals National Health Service Trust
  • Chakrapani Vasudevan
    Bradford Hospitals National Health Service Trust
  • Richard Feltbower
    University of Leeds
  • Bob Phillips
    University of York
  • Gayathri Subramanian
    Manchester University National Health Service Foundation Trust
  • Andrew Haynes
    University of York
  • Lorna K. Fraser
    University of York
Background
Provision of and access to paediatric end-of-life care is inequitable, but previous research on this area has focused on perspectives of health professionals in specific settings or children with specific conditions.

This qualitative study aimed to explore regional perspectives of the successes, and challenges to the equitable coordination and delivery of end-of-life care for children in the UK.

The study provides an overarching perspective on the challenges of delivering and coordinating end-of-life care for children in the UK, and the impact of these on health professionals and organisations. Previous research has not highlighted the successes in the sector, such as the formal and informal coordination of care between different services and sectors.

Methods
Semi-structured interviews with Chairs of the regional Palliative Care Networks across the UK. Chairs or co-Chairs (n = 19) of 15/16 Networks were interviewed between October-December 2021. Data were analysed using thematic analysis.

Results
Three main themes were identified: one standalone theme (“Communication during end-of-life care”); and two overarching themes (“Getting end-of-life services and staff in the right place”, with two themes: “Access to, and staffing of end-of-life care” and “Inconsistent and insufficient funding for end-of-life care services”; and “Linking up healthcare provision”, with three sub-themes: “Coordination successes”, “Role of the networks”, and “Coordination challenges”). Good end-of-life care was facilitated through collaborative and network approaches to service provision, and effective communication with families. The implementation of 24/7 advice lines and the formalisation of joint-working arrangements were highlighted as a way to address the current challenges in the specialism.

Conclusions
Findings demonstrate how informal and formal relationships between organisations and individuals, enabled early communication with families, and collaborative working with specialist services. Formalising these could increase knowledge and awareness of end of life care, improve staff confidence, and overall improve professionals’ experiences of delivering care, and families’ experiences of receiving it.

There are considerable positives that come from collaborative working between different organisations and sectors, and care could be improved if these approaches are funded and formalised. There needs to be consistent funding for paediatric palliative care and there is a clear need for education and training to improve staff knowledge and confidence.
Original languageEnglish
Article number117
JournalBMC Palliative Care
Volume22
Issue number1
DOIs
Publication statusPublished - 16 Aug 2023

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