Lancaster Medical School, Lancaster University, Lancaster, LA1 4AT, UK.
Doctor of Pharmacy Department, Birzeit University, Birzeit, Palestine.
BMC Palliat Care. 2023 Aug 10;22(1):115. doi: 10.1186/s12904-023-01241-1.
Patients with heart failure have significant palliative care needs, but few are offered palliative care. Understanding the experiences of delivering and receiving palliative care from different perspectives can provide insight into the mechanisms of successful palliative care integration. There is limited research that explores multi-perspective and longitudinal experiences with palliative care provision. This study aimed to explore the longitudinal experiences of patients with heart failure, family carers, and health professionals with palliative care services.
A secondary analysis of 20 qualitative three-month apart interviews with patients with heart failure and family carers recruited from three community palliative care services in the UK. In addition, four group interviews with health professionals from four different services were analysed. Data were analysed using 'reflexive thematic' analysis. Results were explored through the lens of Normalisation Process Theory.
Four themes were generated: Impact of heart failure, Coping and support, Recognising palliative phase, and Coordination of care. The impact of heart failure on patients and families was evident in several dimensions: physical, psychological, social, and financial. Patients developed different coping strategies and received most support from their families. Although health professionals endeavoured to support the patients and families, this was sometimes lacking. Health professionals found it difficult to recognise the palliative phase and when to initiate palliative care conversations. In turn, patients and family carers asked for better communication, collaboration, and care coordination along the whole disease trajectory.
The study provided broad insight into the experiences of patients, family carers, and health professionals with palliative care. It showed the impact of heart failure on patients and their families, how they cope, and how they could be supported to address their palliative care needs. The study findings can help researchers and healthcare professionals to design palliative care interventions focusing on the perceived care needs of patients and families.
心力衰竭患者有显著的姑息治疗需求，但很少有人接受姑息治疗。从不同角度了解提供和接受姑息治疗的经验，可以深入了解成功整合姑息治疗的机制。目前，关于姑息治疗提供的多视角和纵向经验的研究有限。本研究旨在探索心力衰竭患者、家庭照顾者和卫生专业人员对姑息治疗服务的纵向体验。
对英国 3 家社区姑息治疗服务机构招募的心力衰竭患者和家庭照顾者进行的 20 次为期 3 个月的间隔访谈的二次分析。此外，还对来自 4 个不同服务机构的 4 名卫生专业人员进行了 4 次小组访谈。使用“反思主题”分析对数据进行分析。结果通过正常化过程理论进行探讨。
产生了 4 个主题：心力衰竭的影响、应对和支持、认识姑息阶段、以及护理协调。心力衰竭对患者和家庭的影响在几个方面显而易见：身体、心理、社会和经济。患者发展了不同的应对策略，主要得到了家人的支持。尽管卫生专业人员努力支持患者和家庭，但有时这是不够的。卫生专业人员发现难以识别姑息阶段以及何时开始姑息治疗对话。反过来，患者和家庭照顾者要求在整个疾病轨迹上进行更好的沟通、协作和护理协调。
该研究广泛了解了姑息治疗患者、家庭照顾者和卫生专业人员的体验。它展示了心力衰竭对患者及其家庭的影响，以及他们如何应对，并如何支持他们满足姑息治疗需求。研究结果可以帮助研究人员和医疗保健专业人员设计姑息治疗干预措施，重点关注患者和家庭的感知护理需求。
