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The Meaning of Leprosy and Everyday Experiences: An Exploration in Cirebon Indonesia

机译:麻风的意义和日常经验:印度尼西亚井里汶的探索

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摘要

It is imperative to consider the meaning of leprosy and everyday experiences of people affected by leprosy and key persons in the community if one aims to make leprosy services more effective, which appears necessary in Indonesia given the large numbers of new cases detected annually. However, little is written in the international literature about the experiences of people currently being treated for leprosy, those cured, or other key informants. This paper analyses the narratives of the people by drawing upon in-depth interviews with 53 participants and 20 focus groups discussions. The participants were purposively selected. We provide insights into the experiences of people and the meaning they give to leprosy and highlight aspect of aetiology, spirituality, religion, darkening of the skin, and sorcery. We also examine experiences of seeking care and focused on the impact of the disease in particular on the elderly and children. In conclusion, the continued need for implementation of leprosy services in Indonesia is very evident. The diversities in people's experiences with leprosy indicate a demand for responsive leprosy services to serve the diverse needs, including services for those formally declared to be “cured.”
机译:如果要使麻风服务更有效,就必须考虑麻风的含义和受麻风病影响的人以及社区关键人物的日常经历,鉴于每年发现的新病例很多,这在印度尼西亚看来是必要的。但是,在国际文献中,关于麻风病患者,治愈者或其他关键知情者的经历的文献很少。本文通过对53位参与者的深入访谈和20个焦点小组的讨论,对人们的叙事进行了分析。目的是选择参与者。我们提供人们的经历及其对麻风病的意义的见解,并突出病因学,灵性,宗教,皮肤变黑和巫术等方面。我们还将研究寻求护理的经验,并关注疾病的影响,尤其是对老年人和儿童的影响。总之,在印度尼西亚继续需要实施麻风服务非常明显。人们在麻风病方面的经历的多样性表明,需要有响应的麻风病服务来满足各种需求,包括正式宣布要“治愈”的服务。

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