Athena Institute, Faculty of Science, VU University Amsterdam, Amsterdam, Netherlands.
Department of dermatology, Dr. Soetomo General Teaching Hospital, Surabaya, Indonesia.
PLoS Negl Trop Dis. 2022 Jun 13;16(6):e0010476. doi: 10.1371/journal.pntd.0010476. eCollection 2022 Jun.
Leprosy reactions, Type-1 and erythema nodosum leprosum, are immune-mediated complications of leprosy, which play a significant role in the morbidity associated with the disease. A considerable amount of literature has been published on the impact of leprosy in general but few studies focus specifically on leprosy reactions. This study aimed to investigate the impact of leprosy reactions on physical, psychological, and social aspects of the lives of people affected by analysing their life experiences and perspectives about leprosy reactions.
METHODS/PRINCIPAL FINDINGS: This qualitative study involved people affected by leprosy reactions and their family members in two leprosy endemic countries. The data were collected through 66 interviews and 9 focus group discussions (4-6 participants each) in Surabaya, Indonesia, and Purulia, India. Content analysis and conversational analysis were performed. This study found that both types of leprosy reactions were perceived as an unpredictable and painful condition. Leprosy reactions restricted physical activities of the participants, such as going to bathroom, sleeping, eating, and cooking. In the interviews, the respondents expressed a range of emotions and feelings including confusion, sadness, anxiety, and anger. Some recounted that they felt stigmatized and lost opportunities to socialise and earn money. Differences between the two settings were identified. The majority of Indonesian participants preferred to stay at home, and some concealed the diagnosis of leprosy, while most of the Indian respondents continued working up to the time of hospitalization.
Leprosy reactions are a distressing complication of leprosy and adversely affect the lives of those affected. Individuals reported physical discomfort, distress, anxiety, stigma, and financial hardship and these negative impacts in the physical, psychological, and social spheres reinforced each other. These findings provide important information about a need for early detection and sustained commitment to follow-up care for people with a history of leprosy reactions. More research on new drugs for reactional episodes, tools to measure knowledge, attitude, and practice, and costing study on leprosy reactions treatment are needed. We recommend the development and testing of holistic strategies to improve the management of leprosy reactions.
麻风反应，包括 1 型反应和结节性红斑麻风，是麻风病的免疫介导性并发症，在与该疾病相关的发病率中起着重要作用。已经发表了大量关于麻风病总体影响的文献，但很少有研究专门关注麻风反应。本研究旨在通过分析受影响者的生活经历和对麻风反应的看法，研究麻风反应对受影响者生活的身体、心理和社会方面的影响。
方法/主要发现：本定性研究涉及印度 Purulia 和印度尼西亚泗水两个麻风流行国家的麻风反应受影响者及其家属。数据通过在印度尼西亚泗水和印度 Purulia 进行的 66 次访谈和 9 次焦点小组讨论（每次 4-6 名参与者）收集。进行了内容分析和会话分析。本研究发现，两种类型的麻风反应都被认为是一种不可预测和痛苦的疾病。麻风反应限制了参与者的身体活动，例如上厕所、睡觉、进食和做饭。在访谈中，受访者表达了一系列情绪和感受，包括困惑、悲伤、焦虑和愤怒。一些人说他们感到受到歧视，失去了社交和赚钱的机会。还确定了两种情况之间的差异。印度尼西亚的大多数参与者更喜欢待在家里，有些人隐瞒了麻风病的诊断，而大多数印度受访者在住院之前一直在工作。
麻风反应是麻风病的一种痛苦的并发症，对受影响者的生活产生不利影响。个人报告了身体不适、痛苦、焦虑、耻辱和经济困难，这些负面影响在身体、心理和社会层面相互加强。这些发现提供了有关早期发现和持续承诺为有麻风反应病史的人提供后续护理的重要信息。需要更多关于反应性发作的新药、衡量知识、态度和实践的工具以及麻风反应治疗的成本研究。我们建议制定和测试整体策略，以改善麻风反应的管理。
