Regional perspectives on the coordination and delivery of paediatric end-of-life care in the UK: a qualitative study

Papworth, Andrew; Hackett, Julia; Beresford, Bryony; Murtagh, Fliss; Weatherly, Helen; Hinde, Sebastian; Bedendo, Andre; Walker, Gabriella; Noyes, Jane; Oddie, Sam; Vasudevan, Chakrapani; Feltbower, Richard G.; Phillips, Bob; Hain, Richard; Subramanian, Gayathri; Haynes, Andrew; Fraser, Lorna K.

Abstract

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.

Citation

Papworth, A., Hackett, J., Beresford, B., Murtagh, F., Weatherly, H., Hinde, S., …Fraser, L. K. (2023). Regional perspectives on the coordination and delivery of paediatric end-of-life care in the UK: a qualitative study. BMC Palliative Care, 22(1), Article 117. https://doi.org/10.1186/s12904-023-01238-w

• Journal Article Type: Article
• Acceptance Date: Aug 1, 2023
• Online Publication Date: Aug 16, 2023
• Publication Date: Dec 1, 2023
• Deposit Date: Aug 18, 2023
• Publicly Available Date: Aug 21, 2023
• Journal: BMC Palliative Care
• Print ISSN: 1472-684X
• Electronic ISSN: 1472-684X
• Publisher: Springer Verlag
• Peer Reviewed: Peer Reviewed
• Volume: 22
• Issue: 1
• Article Number: 117
• DOI: https://doi.org/10.1186/s12904-023-01238-w
• Keywords: End of life care; Paediatrics; Palliative care; Child health services; Qualitative
• Public URL: https://hull-repository.worktribe.com/output/4362190
• Additional Information: Received: 27 February 2023; Accepted: 1 August 2023; First Online: 16 August 2023; : ; : Ethics approval for this study was obtained from the University of York’s Department of Health Sciences Research Governance Committee (HSRGC/2020/418/G). All methods were carried out in accordance with relevant guidelines and regulations including the ethical principles for medical research involving human subjects as outlines in the Declaration of Helsinki, World Medical Association. All participants received a study information sheet and provided written informed consent prior to participation.; : Not applicable.; : The authors declare no competing interests.