Mayoral-García Carlos, Fastenau Anil, Ghergu Cristian
Faculty of Health, Medicine and Life Sciences, Maastricht University, Maastricht, The Netherlands.
German Leprosy and Tuberculosis Relief Association (GLRA/DAHW), América del Sur Region, Bogotá, Colombia.
PLOS Glob Public Health. 2025 Mar 18;5(3):e0003939. doi: 10.1371/journal.pgph.0003939. eCollection 2025.
This study examines leprosy-related stigma among patients and healthcare professionals in Colombia. Leprosy, classified as a WHO-listed NTD, is a chronic nerve disease causing sensory loss, disabilities, and deformities when untreated. This contributes to stigma, reducing quality of life, healthcare access, and income. Despite Colombia achieving WHO's prevalence goal, some regions still face high detection rates. As a result, leprosy remains a challenge due to an incomplete understanding of the complete disease burden and its intertwined factors. The study consisted of 25 interviews with patients and healthcare workers, and field visits in Colombia's Norte de Santander Department. Employing a constructivist approach to contextualize leprosy in Colombia through historical and socio-economic factors we integrate participants' perspectives to enable flexibility beyond psychology's rigid stigma categories and the disease's narrow focus. Our research findings confirm regional research on patient stigmatization, including anticipated, internal, and experienced stigma, with a particular focus on the structural level and intersectional factors. This stigma becomes apparent when examining the organization of the healthcare system, the allocation of resources for leprosy prevention, diagnosis, and treatment, and the inadequate attention to patients' mental health. Furthermore, we describe the commercialization of healthcare in Colombia, which perpetuates this situation by undermining the previously established leprosy community network, reducing the disease to a mere bacteriological perspective, and silencing patient narratives. Our research provides valuable insights for enhancing leprosy case detection, diagnosis, treatment, and social inclusion, ultimately improving patients' quality of life. Recommendations for Colombia's public health policies include involving patient expertise in leprosy programs, enhancing national clinical history systems, implementing active case detection, tailoring treatments to local contexts, and encouraging patient participation in comprehensive public initiatives. These measures empower patients, positively impact their mental well-being, and combat the stigma entrenched in Colombian society and institutions.
本研究调查了哥伦比亚患者和医护人员中与麻风病相关的耻辱感。麻风病被列为世界卫生组织列出的被忽视热带病，是一种慢性神经疾病，若不治疗会导致感觉丧失、残疾和畸形。这加剧了耻辱感，降低了生活质量、医疗可及性和收入。尽管哥伦比亚实现了世界卫生组织的流行率目标，但一些地区仍面临高检出率。因此，由于对疾病的完整负担及其相互交织的因素缺乏全面了解，麻风病仍然是一项挑战。该研究包括对患者和医护人员进行的25次访谈，以及对哥伦比亚北桑坦德省的实地考察。我们采用建构主义方法，通过历史和社会经济因素将哥伦比亚的麻风病情况置于具体情境中，整合参与者的观点，以超越心理学中僵化的耻辱类别以及该疾病狭隘的关注点，实现灵活性。我们的研究结果证实了关于患者耻辱化的区域研究，包括预期耻辱、内在耻辱和经历的耻辱，尤其关注结构层面和交叉因素。当审视医疗系统的组织、麻风病预防、诊断和治疗资源的分配以及对患者心理健康的关注不足时，这种耻辱感就会显现出来。此外，我们描述了哥伦比亚医疗保健的商业化现象，它通过破坏先前建立的麻风病社区网络、将疾病简化为单纯的细菌学观点以及压制患者的叙述，使这种情况长期存在。我们的研究为加强麻风病病例检测、诊断、治疗和社会包容提供了宝贵见解，最终改善患者的生活质量。对哥伦比亚公共卫生政策的建议包括让患者专业知识参与麻风病项目、加强国家临床病史系统、实施主动病例检测、根据当地情况调整治疗方法以及鼓励患者参与全面的公共倡议。这些措施赋予患者权力，对他们的心理健康产生积极影响，并对抗哥伦比亚社会和机构中根深蒂固的耻辱感。
