{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,26]],"date-time":"2026-09-26T14:19:18Z","timestamp":1790432358547,"version":"4.1.0"},"reference-count":44,"publisher":"Public Library of Science (PLoS)","issue":"11","license":[{"start":{"date-parts":[[2025,11,5]],"date-time":"2025-11-05T00:00:00Z","timestamp":1762300800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"German Leprosy and TB Relief Association","award":["(7.24.26.04)"],"award-info":[{"award-number":["(7.24.26.04)"]}]}],"content-domain":{"domain":["www.plosmentalhealth.org"],"crossmark-restriction":false},"short-container-title":["PLOS Ment Health"],"abstract":"<jats:p>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 \u201cconceptual framework of the bio-psycho-social impact and coping mechanisms of patients\u201d by Han et al.\u00a0Participants 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.<\/jats:p>","DOI":"10.1371\/journal.pmen.0000453","type":"journal-article","created":{"date-parts":[[2025,11,5]],"date-time":"2025-11-05T18:44:46Z","timestamp":1762368286000},"page":"e0000453","update-policy":"https:\/\/doi.org\/10.1371\/journal.pmen.corrections_policy","source":"Crossref","is-referenced-by-count":3,"title":["\u201cThe general public will never truly know what it feels like\u201d: Exploring the Lived Experiences of Persons Affected by Leprosy in Sindh, Pakistan \u2013 A qualitative study"],"prefix":"10.1371","volume":"2","author":[{"ORCID":"https:\/\/orcid.org\/0009-0000-0564-9974","authenticated-orcid":true,"given":"Sophie C.W.","family":"Unterkircher","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Abdul","family":"Salam","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Isabel","family":"Fernandes","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anil","family":"Fastenau","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"340","published-online":{"date-parts":[[2025,11,5]]},"reference":[{"key":"pmen.0000453.ref001","author":"Leprosy Mission","year":"2025"},{"key":"pmen.0000453.ref002","author":"WHO","year":"2025"},{"key":"pmen.0000453.ref003","author":"WHO","year":"2025"},{"key":"pmen.0000453.ref004","author":"CDC","year":"2024"},{"issue":"1","key":"pmen.0000453.ref005","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pntd.0012764","article-title":"Understanding reasons for delay in diagnosis of leprosy in Pakistan: A qualitative study","volume":"19","author":"A Fastenau","year":"2025","journal-title":"PLoS Negl Trop Dis"},{"issue":"4","key":"pmen.0000453.ref006","first-page":"623","article-title":"Mycobacterium leprae: A historical study on the origins of leprosy and its social stigma","volume":"29","author":"L Santacroce","year":"2021","journal-title":"Infez Med"},{"key":"pmen.0000453.ref007","first-page":"225","article-title":"Assessment of factors responsible for dropout to multi drug therapy for leprosy","volume":"91","author":"N Saraswat","year":"2019","journal-title":"Indian J Lepr"},{"key":"pmen.0000453.ref008","author":"National Health Mission","year":"2025"},{"key":"pmen.0000453.ref009","author":"Government of Nepal","year":"2023"},{"key":"pmen.0000453.ref010","doi-asserted-by":"crossref","first-page":"1453470","DOI":"10.3389\/fpubh.2025.1453470","article-title":"Participatory development of Indonesia\u2019s national action plan for zero leprosy: strategies and interventions","volume":"13","author":"PH Sebong","year":"2025","journal-title":"Front Public Health"},{"key":"pmen.0000453.ref011","author":"WHO","year":"2025"},{"key":"pmen.0000453.ref012","year":"2025"},{"key":"pmen.0000453.ref013","year":"2023"},{"key":"pmen.0000453.ref014","unstructured":"Marie Adelaide Leprosy Centre (MALC). 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