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马拉维农村地区患者的自我管理体验和应对慢性病的策略。

Patients experiences of self-management and strategies for dealing with chronic conditions in rural Malawi.

机构信息

Athena Institute for Research on Innovation and Communication in Health and Life Sciences, Faculty of Sciences, Vrije Universiteit, Amsterdam, The Netherlands.

Unit of Equity and Health, Department of Public Health, Institute of Tropical Medicine, Antwerp, Belgium.

出版信息

PLoS One. 2018 Jul 2;13(7):e0199977. doi: 10.1371/journal.pone.0199977. eCollection 2018.

Abstract

BACKGROUND

The high burden of chronic communicable diseases such as HIV/AIDS, and an escalating rise of non-communicable diseases (NCDs) in Malawi and other sub-Saharan African countries, calls for a shift in how health care services are designed and delivered. Patient-centred care and patient self-management are critical elements in chronic care, and are advocated as universal strategies. In sub-Saharan Africa, there is need for more evidence around the practice of patient self-management, and how to best support patients with chronic conditions in the African context. Our study explored self-management practices of patients with different chronic conditions, and their strategies to overcome care challenges in a resource-constrained setting in Malawi.

METHODS

This is primarily a qualitative study, involving patients with different chronic conditions from one rural district in Malawi. Data are drawn from semi-structured questions of a survey with 129 patients (from the third of four-part data collection series), 14 in-depth interviews, and four focus-group discussions with patients (n = 31 respondents). A framework approach was used for qualitative analysis, and descriptive statistical analysis was performed on survey data.

RESULTS

Patients demonstrated ability to self-manage their conditions, though this varied between conditions, and was influenced by individual and external factors. Factors included: 1) ability to acquire appropriate disease knowledge; 2) poverty level; 3) the presence of support from family caregivers and community-based support initiatives; 4) the nature of one's social relations; and 5) the ability to deal with stressors and stigma. NCD and HIV comorbid patients were more disadvantaged in their access to care, as they experienced frequent drug stock-outs and incurred additional costs when referred. These barriers contributed to delayed care, poorer treatment adherence, and likelihood of poorer treatment outcomes. Patients proved resourceful and made adjustments in the face of (multiple) care challenges.

CONCLUSION

Our findings complement other research on self-management experiences in chronically ill patients with its analysis on factors and barriers that influence patient self-management capacity in a resource-constrained setting. We recommend expanding current peer-patient and support group initiatives to patients with NCDs, and further investments in the decentralisation of integrated health services to primary care level in Malawi.

摘要

背景

艾滋病毒/艾滋病等慢性传染病负担沉重,以及在马拉维和其他撒哈拉以南非洲国家非传染性疾病(NCD)的不断上升,要求改变医疗服务的设计和提供方式。以患者为中心的护理和患者自我管理是慢性病护理的关键要素,被倡导为普遍策略。在撒哈拉以南非洲,需要更多关于患者自我管理实践的证据,以及如何在非洲背景下最好地支持慢性病患者。我们的研究探讨了不同慢性病患者的自我管理实践,以及他们在马拉维资源有限的环境中克服护理挑战的策略。

方法

这主要是一项定性研究,涉及马拉维一个农村地区的不同慢性病患者。数据来自于对 129 名患者(来自四部分数据收集系列中的第三部分)的调查的半结构化问题、14 次深入访谈和 4 次患者焦点小组讨论(31 名受访者)。采用框架方法进行定性分析,并对调查数据进行描述性统计分析。

结果

患者表现出自我管理病情的能力,尽管这种能力因病情而异,并受到个人和外部因素的影响。这些因素包括:1)获得适当疾病知识的能力;2)贫困水平;3)家庭照顾者和社区支持举措的支持;4)个人社会关系的性质;5)应对压力和污名的能力。NCD 和 HIV 合并患者在获得护理方面处于劣势,因为他们经常出现药物缺货,并且转诊时会产生额外费用。这些障碍导致护理延迟、治疗依从性较差,以及治疗结果较差的可能性增加。患者在面对(多种)护理挑战时表现出足智多谋,并进行了调整。

结论

我们的研究结果补充了其他关于慢性病患者自我管理经验的研究,对影响资源有限环境中患者自我管理能力的因素和障碍进行了分析。我们建议扩大当前针对 NCD 患者的同伴患者和支持小组举措,并进一步投资将综合卫生服务去中心化到马拉维的初级保健水平。

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