“We are running on the fumes of goodwill”Professionals’ experiences of delivering 24/7 end-of-life care to children and their families: a qualitative study

Sep 30, 2026

Despite improvements, inequities in funding and provision leave many children and families without adequate 24/7 end-of-life care. A qualitative study explored professionals’ perspectives on delivering 24/7 paediatric palliative care and expectations for a new service. Eleven focus groups with 53 healthcare professionals were analysed thematically. Findings highlight fragmented coordination, constraints on family choice due to inconsistent local/community provision, and moral as well as physical and emotional costs from relying on overstretched goodwill. Integrated equitable delivery models are needed.

LanguageEnglish

CategoryHealthcare

FormatPDF

Pages13

Reading Time33 min

AccessFree to download

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Barrett etal. BMC Palliative Care (2026) 25:9 BMC Palliative Care [https://doi.org/10.1186/s12904-025-01958-1](https://doi.org/10.1186/s12904-025-01958-1) RESEARCH Open Access “We are running on the fumes of goodwill”Professionals’ experiences of delivering 24/7 end-of-life care to children and their families: a qualitative study Laura Barrett 1*, Lorna Fraser2, Lucy Ziegler3, Stuart Jarvis 1, Susan Picton4 and Julia Hackett2 Abstract Background Despite recent improvements, there is still stark inequity in the funding and provision of 24/7 end-oflife care for children, resulting in many families not receiving the support they need. To inform, plan and implement service changes it is important to take account of what works in current contexts and existing models of care, and to learn how professionals ‘on the ground’ are currently experiencing 24/7 care delivery. Methods The study aimed to explore professionals’ perspectives of delivering 24/7 paediatric palliative care and their expectations and needs of a new service. This qualitative study used focus groups, and a thematic framework approach to analyse the data. Participants were healthcare professionals (HCPs) involved in the delivery of care to children (0–18 years) with palliative care needs and their families. Results Fifty-three healthcare professionals,(25 doctors, 19 nurses, 6 managerial/administration and 3 allied professionals), took part in 11 focus groups. Three themes with sub-themes were developed: (1) Working within a fragmented landscape (Responding to the need for 24/7 end-of-life care, Coordination across teams without infrastructure, Building 24/7 continuity through integration); (2) Constraints on choice: default not preferred choice? (Limits to family choice, Critical yet inconsistent provision of community nursing, Inequality of access to specialist support); and (3) The personal cost of making it work (Gaps in confidence and experience, The price of goodwill) . Professionals navigated a disjointed system to deliver 24/7 care to families. They strived to offer care in families’ preferred place; however, choice was constrained by the availability of local services. Professionals stretched themselves to provide around the clock care, often sacrificing their personal wellbeing and in doing so, inadvertently sustaining a broken system. Conclusion Stepping up to support families with 24/7 end-of-life care for their child, has resulted in an unsustainable physical and emotional toll on professionals. The impact of delivering care in an inequitable system is causing significant moral distress, and there is a growing realisation that their goodwill is masking current systemic shortcomings. Integrated Care Boards must work jointly to find economies of scale to establish equitable and *Correspondence: Laura Barrett [Laura.barrett@york.ac.uk](Laura.barrett@york.ac.uk) Full list of author information is available at the end of the article © The Author(s) 2025. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit [http://creativecommons.org/l](http://creativecommons.org/l)icenses/by/4.0/. sustainable models of delivery that meet national standards and to ensure all children have access to high quality

FAQs

Why is 24/7 paediatric end-of-life care still inequitable?

The study describes stark inequity in funding and provision, leading many families to not receive the support they need.

How was the study conducted and who participated?

The researchers used focus groups and a thematic framework approach. Participants were healthcare professionals involved in delivering palliative care to children aged 0–18 and their families.

What key themes emerged from professionals’ experiences?

Three themes were identified: working within a fragmented landscape, constraints on choice due to inconsistent local provision, and the personal cost of sustaining care, including moral distress and strain.

Sep 30, 2026

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