Department of Health Sciences, Martin House Research Centre, University of York, Heslington, YO10 5DD, York, UK.
Department of Health Sciences, University of York, York, YO10 5DD, UK.
BMC Palliat Care. 2023 Aug 16;22(1):117. doi: 10.1186/s12904-023-01238-w.
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.
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.
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.
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.
儿科临终关怀的提供和可及性存在不平等，但先前该领域的研究侧重于特定环境下卫生专业人员或特定疾病儿童的观点。本定性研究旨在探讨英国区域视角下，实现儿童临终关怀公平协调和提供所面临的成功与挑战。本研究从整体上阐述了为英国儿童提供和协调临终关怀所面临的挑战，以及这些挑战对卫生专业人员和组织的影响。先前的研究并未强调该领域的成功之处，例如不同服务和部门之间的护理正式和非正式协调。
对英国各地区域姑息治疗网络主席进行半结构化访谈。2021 年 10 月至 12 月期间，对 15/16 个网络中的 19 位主席或联合主席进行了访谈。使用主题分析法对数据进行分析。
确定了三个主要主题：一个独立主题（“临终关怀期间的沟通”）；两个总体主题（“使临终关怀服务和人员到位”，包含两个主题：“临终关怀的获取和人员配备”和“临终关怀服务的资金不一致且不足”）；以及“医疗服务提供的衔接”，包含三个子主题：“协调的成功”、“网络的作用”和“协调的挑战”）。良好的临终关怀是通过提供服务的协作和网络方法以及与家庭的有效沟通来实现的。24/7 咨询热线的实施和联合工作安排的正式化被强调为解决该专业当前挑战的一种方式。
研究结果表明，组织和个人之间的非正式和正式关系如何促进与家庭的早期沟通，并与专科服务进行协作。将这些正式化可以提高对临终关怀的认识和了解，增强员工信心，并整体改善专业人员提供护理的体验以及家庭接受护理的体验。不同组织和部门之间的协作带来了可观的积极成果，如果这些方法得到资金支持和正式化，护理质量可以得到提高。儿科姑息治疗需要有持续的资金支持，并且显然需要教育和培训来提高员工的知识和信心。
