Visser Marlies J, Kc Eliza A, Sopamena Yoslien, Bist Pirt B, Bist Sita, Subedi Madhusudan, Banstola Nand Lal, Rai Sarju S, Yang Lawrence H, Peters Ruth M H
Athena Institute, Faculty of Science, Vrije Universiteit, Amsterdam, The Netherlands.
Amsterdam Public Health Research Institute, Amsterdam, The Netherlands.
Qual Health Res. 2025 Mar 27:10497323251318604. doi: 10.1177/10497323251318604.
Leprosy-related stigma in Nepal adversely affects socioeconomic and health outcomes. The cultural shaping of stigma is often overlooked in stigma (reduction) research. Therefore, this study aimed to (i) identify cultural capabilities in daily life that "matter most" for men and women; (ii) extend and corroborate perspectives and experiences of leprosy-related stigma; and (iii) explore how "what matters most" (WMM) intensifies or protects against leprosy-related stigma in Far-Western Nepal. We performed a directed content analysis of 38 interviews and 8 focus group discussions with a total of 80 men and women affected by leprosy, family members, and healthcare workers-directed by the WMM framework. WMM included key personal and family capabilities, centered around personal and family honor and prestige (). Stigma was rooted in cultural beliefs of leprosy as or leading to (disrespect or disregard) and social exclusion, indicating a loss of personhood. This hinders attainment of WMM in both family and community settings which can negatively affect self-confidence and (mental) health, exacerbating stigma. The study supports the applicability of WMM to leprosy and found that family support and involvement alongside treatment could mitigate some powerful aspects of stigma attached to leprosy. Given its dual role found in this study, family support should be leveraged for stigma reduction efforts enabling families to facilitate WMM for persons affected by leprosy. This study advances the work on WMM and stigma by exploring an infectious condition historically associated with deeply rooted misconceptions, fear, and exclusionary practices.
尼泊尔与麻风病相关的耻辱感对社会经济和健康结果产生了不利影响。在耻辱感（减少）研究中，耻辱感的文化塑造往往被忽视。因此，本研究旨在：（i）确定在日常生活中对男性和女性“最重要”的文化能力；（ii）扩展并证实与麻风病相关耻辱感的观点和经历；（iii）探讨“最重要的事情”（WMM）如何在尼泊尔远西地区加剧或预防与麻风病相关的耻辱感。我们在WMM框架的指导下，对38次访谈和8次焦点小组讨论进行了定向内容分析，访谈和讨论对象共有80名受麻风病影响的男性和女性、家庭成员以及医护人员。WMM包括关键的个人和家庭能力，以个人和家庭的荣誉及威望为核心（）。耻辱感源于麻风病的文化观念，即麻风病是 或 导致 （不尊重或漠视）和社会排斥，这表明人格的丧失。这阻碍了在家庭和社区环境中实现WMM，进而可能对自信和（心理）健康产生负面影响，加剧耻辱感。该研究支持WMM在麻风病研究中的适用性，并发现家庭支持和参与以及治疗可以减轻与麻风病相关耻辱感的一些强大影响。鉴于在本研究中发现的家庭支持的双重作用，应利用家庭支持来减少耻辱感，使家庭能够为受麻风病影响的人促进WMM。本研究通过探索一种在历史上与根深蒂固的误解、恐惧和排斥行为相关的传染病，推进了关于WMM和耻辱感的研究。
