Experiences of stigma and violence among persons affected by skin neglected tropical diseases (NTDs): longitudinal analysis from an integrated intervention in Liberia

Experiences of stigma and violence among persons affected by skin neglected tropical diseases (NTDs): longitudinal analysis from an integrated intervention in Liberia | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Experiences of stigma and violence among persons affected by skin neglected tropical diseases (NTDs): longitudinal analysis from an integrated intervention in Liberia India Hotopf, Shahreen Chowdhury, Hannah Berrian, Wede Seekey, and 12 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-7215609/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 11 You are reading this latest preprint version Abstract Background Persons affected by skin neglected tropical diseases (skin NTDs) commonly face stigma and violence, which perpetuates social exclusion, mental health issues, poverty and impedes health-seeking behaviour. Thus, stigma and violence towards persons affected by skin NTDs risks World Health Organisation (WHO) 2030 roadmap progress. Liberia is among the first countries to launch an integrated skin NTD programme; and through REDRESS (Reducing the Burden of Severe Stigmatising Skin Diseases), has co-developed and evaluated an enhanced integrated skin NTDs case management programme, which includes stigma reducing components. This study sought to address existing evidence gaps, by exploring experiences of stigma and violence among persons affected by skin NTDs, including how their experiences change over time; in relation to gender and condition, and making evidence-based recommendations. Methods This study used a participatory action research approach, which used participatory methods (e.g., photovoice) and worked with persons affected as co-researchers. We drew on longitudinal qualitative data (n = 207) from three distinct timepoints during 2019–2023 with respondents from across the health system, with data from the perspective of persons affected prioritised. We conducted thematic framework analysis, and applied gender analysis, building on our conceptual stigma and violence framework. Findings and discussion Stigma and violence, commonly attributed to myths and misconceptions, are hindering participation and inclusion. Stigma and violence have qualitatively reduced, however, emotional violence across all levels and internalised stigma remain prevalent. There has been a decline in stigmatising attitudes held by formal health workers, but some informal providers (traditional and faith healers) continue to perpetuate harmful myths. Gender shapes the manifestation and determinants of violence, often mirroring gender norms, with women disproportionately impacted. Leprosy was associated with the most distressing accounts, with persons affected feeling stripped of their identities as humans. Full Text Additional Declarations No competing interests reported. Cite Share Download PDF Status: Under Review Version 1 posted Editorial decision: Revision requested 21 Mar, 2026 Reviews received at journal 19 Mar, 2026 Reviewers agreed at journal 12 Mar, 2026 Reviews received at journal 12 Mar, 2026 Reviewers agreed at journal 12 Mar, 2026 Reviewers agreed at journal 09 Mar, 2026 Reviewers agreed at journal 07 Mar, 2026 Reviewers invited by journal 27 Oct, 2025 Editor assigned by journal 30 Jul, 2025 Submission checks completed at journal 27 Jul, 2025 First submitted to journal 25 Jul, 2025 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. 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Thus, stigma and violence towards persons affected by skin NTDs risks World Health Organisation (WHO) 2030 roadmap progress. Liberia is among the first countries to launch an integrated skin NTD programme; and through REDRESS (Reducing the Burden of Severe Stigmatising Skin Diseases), has co-developed and evaluated an enhanced integrated skin NTDs case management programme, which includes stigma reducing components. This study sought to address existing evidence gaps, by exploring experiences of stigma and violence among persons affected by skin NTDs, including how their experiences change over time; in relation to gender and condition, and making evidence-based recommendations.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e\u003cp\u003eThis study used a participatory action research approach, which used participatory methods (e.g., photovoice) and worked with persons affected as co-researchers. We drew on longitudinal qualitative data (n\u0026thinsp;=\u0026thinsp;207) from three distinct timepoints during 2019\u0026ndash;2023 with respondents from across the health system, with data from the perspective of persons affected prioritised. We conducted thematic framework analysis, and applied gender analysis, building on our conceptual stigma and violence framework.\u003c/p\u003e\u003ch2\u003eFindings and discussion\u003c/h2\u003e\u003cp\u003eStigma and violence, commonly attributed to myths and misconceptions, are hindering participation and inclusion. Stigma and violence have qualitatively reduced, however, emotional violence across all levels and internalised stigma remain prevalent. There has been a decline in stigmatising attitudes held by formal health workers, but some informal providers (traditional and faith healers) continue to perpetuate harmful myths. Gender shapes the manifestation and determinants of violence, often mirroring gender norms, with women disproportionately impacted. Leprosy was associated with the most distressing accounts, with persons affected feeling stripped of their identities as humans.\u003c/p\u003e","manuscriptTitle":"Experiences of stigma and violence among persons affected by skin neglected tropical diseases (NTDs): longitudinal analysis from an integrated intervention in Liberia","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-07-30 12:47:57","doi":"10.21203/rs.3.rs-7215609/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2026-03-21T06:04:31+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-03-19T17:26:47+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"31180697060827889225510184387856212749","date":"2026-03-12T16:42:40+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-03-12T08:46:28+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"6830503388112895470592082190841435833","date":"2026-03-12T07:57:57+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"229821794033783110640899086089890668420","date":"2026-03-09T07:52:50+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"229051541356800429548148354491599101338","date":"2026-03-08T00:35:01+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-10-27T12:55:53+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-07-30T05:00:10+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-07-27T23:55:59+00:00","index":"","fulltext":""},{"type":"submitted","content":"International Journal for Equity in Health","date":"2025-07-25T15:16:27+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"international-journal-for-equity-in-health","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"ijeh","sideBox":"Learn more about [International Journal for Equity in Health](http://equityhealthj.biomedcentral.com)","snPcode":"12939","submissionUrl":"https://submission.nature.com/new-submission/12939/3","title":"International Journal for Equity in Health","twitterHandle":"@equityhealthj","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"9369f84c-3fba-4ec8-8a8a-23c7e145add4","owner":[],"postedDate":"July 30th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-04-21T19:24:01+00:00","versionOfRecord":[],"versionCreatedAt":"2025-07-30 12:47:57","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-7215609","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7215609","identity":"rs-7215609","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}