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Lepr Rev. 2017 Mar;88(1):2-22.
2
"I Wasted 3 Years, Thinking It's Not a Problem": Patient and Health System Delays in Diagnosis of Leprosy in India: A Mixed-Methods Study.“我浪费了三年时间,还以为这不是个问题”:印度麻风病诊断中患者及卫生系统的延误:一项混合方法研究
PLoS Negl Trop Dis. 2017 Jan 12;11(1):e0005192. doi: 10.1371/journal.pntd.0005192. eCollection 2017 Jan.
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The Impact of a Rights-Based Counselling Intervention to Reduce Stigma in People Affected by Leprosy in Indonesia.基于权利的咨询干预对减少印度尼西亚麻风病患者耻辱感的影响。
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Lay and peer counsellors to reduce leprosy-related stigma--lessons learnt in Cirebon, Indonesia.外展人员和同伴咨询员减少与麻风病相关的耻辱感——在印度尼西亚井里汶的经验教训
Lepr Rev. 2015 Mar;86(1):37-53.
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The missing millions: a threat to the elimination of leprosy.失踪的数百万人:对消除麻风病的威胁。
PLoS Negl Trop Dis. 2015 Apr 23;9(4):e0003658. doi: 10.1371/journal.pntd.0003658. eCollection 2015 Apr.
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How to reduce stigma in leprosy--a systematic literature review.如何减少麻风病的污名化——一项系统的文献综述
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Global leprosy update, 2013; reducing disease burden.2013年全球麻风病最新情况;减轻疾病负担
Wkly Epidemiol Rec. 2014 Sep 5;89(36):389-400.
8
Factors affecting perceived stigma in leprosy affected persons in western Nepal.尼泊尔西部麻风病影响者感知污名的影响因素。
PLoS Negl Trop Dis. 2014 Jun 5;8(6):e2940. doi: 10.1371/journal.pntd.0002940. eCollection 2014 Jun.
9
Enhancing counselling strategies for leprosy patients through the participation scale.通过参与量表增强麻风病患者的咨询策略。
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Leprosy:before and after elimination from Nepal.麻风病:尼泊尔消除麻风病前后
Kathmandu Univ Med J (KUMJ). 2012 Jan-Mar;10(37):1-2. doi: 10.3126/kumj.v10i1.6903.

“如果你能用爱进行适当的劝导,他们会倾听的”:尼泊尔麻风病患者的教育需求和照顾者认知的定性分析。

"If you will counsel properly with love, they will listen": A qualitative analysis of leprosy affected patients' educational needs and caregiver perceptions in Nepal.

机构信息

Division of Tropical and Humanitarian Medicine, Geneva University Hospitals and University of Geneva, Geneva, Switzerland.

Division of Therapeutic Patient Education for Chronic Diseases, Geneva University Hospitals, Geneva, Switzerland.

出版信息

PLoS One. 2019 Feb 6;14(2):e0210955. doi: 10.1371/journal.pone.0210955. eCollection 2019.

DOI:10.1371/journal.pone.0210955
PMID:30726259
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6364891/
Abstract

BACKGROUND

Leprosy remains a disease of concern in many countries including Nepal. To achieve the target of elimination, the WHO strategy promotes comprehensive education of patients, healthcare workers (HCWs), and the public on leprosy-related issues. However most educational programs are based on the concerns of HCWs and not on patients' needs. The objective of this paper is to explore the educational needs of leprosy affected patients in Nepal and compare them to the needs perceived by HCWs.

METHODOLOGY/PRINCIPAL FINDINGS: Semi directive interviews were conducted with patients and HCWs. The data was analyzed using the basic interpretative qualitative framework. The study was conducted in two leprosy referral centers, one university hospital and one primary health care center: Lalgadh Leprosy Hospital and Services Centre, Anandaban Hospital and its satellite clinic in Patan, B. P. Koirala Institute of Health Sciences in Dharan, and the Itahari primary health care centre. The results show that there remains a lack of knowledge regarding the disease (origins, manifestations, prevention and treatment) contributing to late care seeking behavior and high levels of stigma, with an important psychological and financial stress for patients. All of the HCWs displayed a good understanding of patients' difficulties and needs and acknowledged the key role of patient education. However, they expressed several challenges in managing patients due to lack of time, human resources and training in patient education.

CONCLUSIONS/SIGNIFICANCE: Further efforts need to be made to increase patients' general knowledge of the disease in order to motivate them to seek healthcare earlier and change their perception of the disease to reduce stigma. HCWs need proper training in patient education and counseling for them to acquire the necessary skills required to address the different educational needs of their patients. The use of lay and peer counselors would be an option to address the workload and lack of time expressed by HCWs.

摘要

背景

麻风病在包括尼泊尔在内的许多国家仍然是一个令人关注的疾病。为了实现消除目标,世界卫生组织的战略提倡对患者、医护人员和公众进行有关麻风病问题的综合教育。然而,大多数教育计划都是基于医护人员的关注点,而不是基于患者的需求。本文的目的是探讨尼泊尔麻风病患者的教育需求,并将其与医护人员的需求进行比较。

方法/主要发现:对患者和医护人员进行了半指导性访谈。使用基本解释性定性框架对数据进行了分析。该研究在两个麻风病转诊中心、一家大学医院和一家基层医疗保健中心进行:Lalgadh 麻风病医院和服务中心、Anandaban 医院及其在帕坦的卫星诊所、B.P. Koirala 卫生科学研究所和伊塔哈里基层医疗保健中心。结果表明,人们对疾病(起源、表现、预防和治疗)缺乏了解,导致寻求护理的时间较晚,污名化程度较高,给患者带来了重要的心理和经济压力。所有医护人员都很好地理解了患者的困难和需求,并承认患者教育的关键作用。然而,他们表示,由于缺乏时间、人力资源和患者教育培训,在管理患者方面存在一些挑战。

结论/意义:需要进一步努力提高患者对疾病的一般认识,以激励他们更早地寻求医疗保健,并改变他们对疾病的看法,以减少污名化。医护人员需要接受适当的患者教育和咨询培训,以掌握满足患者不同教育需求所需的必要技能。利用非专业和同伴辅导员将是解决医护人员表达的工作量和时间不足的一种选择。