“We’re teetering on unsteady ground” parents’ experiences of accessing 24/7 paediatric end-of-life care: a qualitative study
The study found marked inequity in parent's experiences. Parents are confident when supported by a trusted 24/7 team with experience delivering palliative care, that provides phone support, face-to-face nursing and access to specialist advice. Hospital staff need improved training and consistent support from specialist palliative care teams. Further research with professionals is needed to understand the local and regional barriers that are preventing this support being available to all families.
Authors
- Lorna Fraser (ORCID: https://orcid.org/0000-0002-1360-4191)
- Susan Picton
- Stuart Jarvis (ORCID: https://orcid.org/0000-0001-8447-0306)
- Laura Barrett (ORCID: https://orcid.org/0000-0001-8721-8886)
- Lucy Ziegler (ORCID: https://orcid.org/0000-0001-9563-5014)
- Julia Hackett (ORCID: https://orcid.org/0000-0003-1720-6665)
Institutions
- University of Leeds (GB)
- Leeds Teaching Hospitals NHS Trust (GB)
- Cicely Saunders International (GB)
- University of York (GB)
Publication Details
- Journal
- BMC Palliative Care
- Published
- 2025-11-12
- DOI
- https://doi.org/10.1186/s12904-025-01927-8
- Citations
- 1
- Primary Topic
- Childhood Cancer Survivors' Quality of Life
- Type
- article
- Field-Weighted Citation Impact
- 3.49