“The general public will never truly know what it feels like”: Exploring the Lived Experiences of Persons Affected by Leprosy in Sindh, Pakistan – A qualitative study

This study examines the impact of leprosy on those affected by leprosy in Sindh, Pakistan, exploring their care-seeking behavior, treatment experiences, well-being, stigma and coping mechanisms. By highlighting the lived experiences of persons affected by leprosy (PAL), this study aims to inform strategies that address not only the biological aspects of leprosy, but also the social and psychological challenges faced by this marginalized population. Fifteen in-depth interviews were conducted with persons affected by leprosy from Sindh, Pakistan. A combined inductive and deductive thematic analysis approach was applied inspired by the “conceptual framework of the bio-psycho-social impact and coping mechanisms of patients” by Han et al. Participants reported delays in diagnosis of up to twenty years, significantly influenced by limited awareness and socio-economic barriers. These delays increased the risk of physical disability and worsened mental health problems such as depression and anxiety, largely fueled by stigma and misinformation. While both genders experienced stigma, women were more likely to express their mental health problems, highlighting gender differences in discussing such issues. Peer support and community storytelling emerged as effective strategies to mitigate stigma, while the role of religious beliefs shaped both societal perceptions and personal coping mechanisms. The findings highlight the need for comprehensive, culturally sensitive interventions that address the bio-psycho-social challenges faced by PAL. Implementing people-centered strategies that use storytelling, community engagement and digital health tools are essential to reduce delays in diagnosis and improve the overall well-being of PAL. Further research is needed to refine these interventions and ensure that they are aligned with the needs and beliefs of those affected by leprosy.