Intersecting Stigma and Lived Experiences in Leprosy: Qualitative Insights from Persons Affected by Leprosy and Healthcare Workers from Pakistan, with comparative Reflections on Tuberculosis

Although great progress has been achieved in reducing the global burden of leprosy, the chronic infectious disease continues to impact the lives of those affected in various ways. As a neglected tropical disease (NTD), it receives limited attention, particularly in low-endemic settings where competing health priorities emerge. This dissertation aims to develop an in-depth understanding of leprosy care and the lived experience of PAL in Sindh, Pakistan. A particular focus is placed on health stigma, social determinants of health (SDH), health sys-tems, and knowledge and information, and how these factors influence everyday life and health behavior. This is achieved through three interrelated studies. The first study (Manu-script I) qualitatively explores the experiences of healthcare workers (HCW) involved in leprosy care in Sindh, Pakistan. The second study (Manuscript II) examines the lived experi-ences and health behavior of PAL in Sindh through a qualitative approach. The third study (Manuscript III), a systematic review, builds on the findings from the first two studies, focus-ing on gendered experiences of persons affected by leprosy or tuberculosis (TB) in the global literature. Findings can be grouped into four overarching and interrelated domains: health systems, SDH, stigma and knowledge. In Pakistan, low disease prevalence, socio-economic constraints, and gender roles strongly influenced care-seeking, often leading to delayed diag-nosis. Specialized care structures provided by non-governmental organizations (NGOs) were generally well perceived and organized. However, limited awareness, and persistent miscon-ceptions within society contributed to ongoing transmission and negatively affected physical and mental well-being. Stigma and knowledge gaps were closely intertwined and require a close investigation to determine their relative influence in low-endemic settings. In addition, disease-related stigma and stigma linked to SDH, such as poverty were interconnected and should be considered jointly in the context of poverty related diseases (PRD). Patterns ob-served in Pakistan were also reflected globally for both leprosy and TB, with gender emerg-ing as a cross-cutting determinant influencing health behavior, lived experiences, and disease outcomes. Women were consistently disproportionately affected. Across settings, influence of SDH, fear of contagion, as well as enacted and internalized stigma, shaped social roles, well-being and health behavior. Overall, this dissertation revealed important gaps relevant to be considered for both theoretical and practical implications going forward. The findings underscore the importance of understanding context-specific experiences and valuing indi-vidual perspectives, while also recognizing recurring patterns across settings and more prevalent infectious diseases, such as TB. Addressing leprosy effectively therefore requires integrated, context-sensitive approaches that account for stigma, structural inequalities and gendered experiences, while also leveraging similarities with other PRD.