Hodge Gary, Kallis Gina, Oh Tomasina M, Wheat Hannah, Pearce Susie
School of Nursing and Midwifery, University of Plymouth, Plymouth, United Kingdom.
Peninsula Medical School, University of Plymouth, Plymouth, United Kingdom.
Front Sociol. 2025 Jan 20;9:1488688. doi: 10.3389/fsoc.2024.1488688. eCollection 2024.
Palliative and End of Life care (PEoLC) in the United Kingdom (UK) is increasingly being reported as inadequate. This is occurring amidst a wider backdrop of health and social care systems facing unprecedented pressure, particularly as they recover from the long-term impact of the COVID-19 pandemic. This study aimed to explore the barriers to PEoLC faced by those providing and receiving care in South-West England (UK). This region of the UK brings its own set of unique challenges due to its rural and coastal location, an aging population, and a historical lack of research.
An exploratory study was conducted which involved patients, families, and professionals who were providing and receiving PEoLC. A total of 13 qualitative focus groups were held with a total of 63 participants; 45 were health and care professionals and 18 were people toward the end of their life, family/carers and people who were bereaved.
A range of barriers were identified for those providing and receiving PEoLC services. These were a lack of specialist palliative and EoL care resources (particularly in out-of-hours care); poor communication, collaboration and co-ordination across providers; inequalities in the access and provision of care; the impact of the COVID-19 pandemic; and a reluctance to have conversations about death and dying.
This study brings together the voices of patients, family, and professionals from different settings in a geographical area of the UK. Understanding their experiences and perceived barriers to care is key to being able to develop and transform care. Ultimately, there is a need for a collaborative and co-ordinated approach across both practice and research, working toward what is important to those providing, and most importantly, those receiving care at the end of their lives.
英国的姑息治疗和临终关怀（PEoLC）越来越多地被报道为不足。这一情况发生在健康和社会护理系统面临前所未有的压力这一更广泛背景下，尤其是在它们从新冠疫情的长期影响中恢复过来的时候。本研究旨在探讨英国英格兰西南部提供和接受护理的人员所面临的PEoLC障碍。由于其农村和沿海的地理位置、老龄化人口以及历史上缺乏研究，英国的这个地区带来了一系列独特的挑战。
进行了一项探索性研究，涉及提供和接受PEoLC的患者、家庭和专业人员。共举行了13次定性焦点小组讨论，共有63名参与者；45名是健康和护理专业人员，18名是临终患者、家属/护理人员以及丧亲者。
确定了提供和接受PEoLC服务的一系列障碍。这些障碍包括缺乏专业的姑息治疗和临终关怀资源（特别是在非工作时间护理方面）；各提供者之间沟通、协作和协调不佳；护理获取和提供方面的不平等；新冠疫情的影响；以及不愿谈论死亡和临终问题。
本研究汇集了英国一个地理区域内不同环境下患者、家庭和专业人员的声音。了解他们的经历以及所感知到的护理障碍是能够发展和转变护理的关键。最终，需要在实践和研究中采取协作和协调的方法，朝着对那些提供护理的人，最重要的是对那些接受临终护理的人重要的方向努力。
