School of Public Health, College of Health Sciences, University of Nairobi, P.O. Box 30197, GPO, Nairobi, Kenya.
Primary Palliative Care Research Group, the Usher Institute, University of Edinburgh, Edinburgh, EH8 9AG, UK.
BMC Palliat Care. 2018 Feb 17;17(1):28. doi: 10.1186/s12904-018-0284-6.
Heart failure is an emerging challenge for Sub Saharan Africa. However, research on patients' needs and experiences of care is scarce with little evidence available to support and develop services. We aimed to explore the experiences of patients living and dying with heart failure in Kenya.
We purposively recruited 18 patients admitted with advanced heart failure at a rural district hospital in Kenya. We conducted serial in depth interviews with patients at 0, 3 and 6 months after recruitment, and conducted bereavement interviews with carers. Interviews were recorded, transcribed into English and analyzed using a thematic approach, assisted by Nvivo software package.
Forty-four interviews were conducted. Patients experienced physical, psychosocial, spiritual and financial distress. They also had unmet needs for information about their illness, how it would affect them and how they could get better. Patients experience of and their interpretation of symptoms influenced health care seeking. Patients with acute symptoms sought care earlier than those with more gradual symptoms which tended to be normalised as part of daily life or assumed to be linked to common treatable conditions. Nearly all patients expected to be cured and were frustrated by a progressive illness poorly responsive to treatment. Accumulating costs was a barrier to continuity of care and caused tensions in social relationships. Patients valued information on the nature of their illness, prognosis, self-care, lifestyle changes and prevention strategies, but this was rarely available.
This is the first in-depth study to explore the experiences of people living with advanced heart failure in Kenya. This study suggests that patients would benefit from holistic care, such as a palliative approach that is aimed at providing multidimensional symptom management. A palliative approach to services should be provided alongside chronic disease management aimed at primary prevention of risk factors, and early identification and initiation of disease modifying therapy. Further research is needed to determine best practice for integrating palliative care for people living and dying with heart failure.
心力衰竭是撒哈拉以南非洲地区面临的一个新挑战。然而，关于患者对护理的需求和体验的研究很少，几乎没有证据可以支持和发展服务。我们旨在探讨肯尼亚心力衰竭患者的生存和死亡体验。
我们在肯尼亚的一家农村地区医院有目的地招募了 18 名患有晚期心力衰竭的患者。我们在招募后 0、3 和 6 个月时对患者进行了连续深入访谈，并对护理人员进行了丧亲访谈。访谈进行了录音，并转录为英文，使用 Nvivo 软件包通过主题分析进行了分析。
进行了 44 次访谈。患者经历了身体、心理社会、精神和经济困扰。他们还需要了解自己的疾病、疾病对自己的影响以及如何改善疾病的信息，但这些需求没有得到满足。患者对症状的体验和解释影响了他们对医疗的寻求。有急性症状的患者比症状逐渐出现的患者更早寻求治疗，而后者则将症状逐渐正常化，将其视为日常生活的一部分或认为是可以治疗的常见病症。几乎所有患者都期望治愈，并对治疗反应不佳的进行性疾病感到沮丧。不断增加的医疗费用是连续治疗的障碍，并导致社会关系紧张。患者重视有关疾病性质、预后、自我护理、生活方式改变和预防策略的信息，但这些信息很少提供。
这是第一项深入探讨肯尼亚晚期心力衰竭患者生存体验的研究。本研究表明，患者将受益于整体护理，例如姑息治疗方法，旨在提供多维症状管理。应该提供姑息治疗服务，同时提供慢性疾病管理，旨在预防危险因素，早期识别和启动疾病修正治疗。需要进一步研究以确定将姑息治疗整合到心力衰竭患者的生存和死亡管理中的最佳实践。
