{"id":51430,"date":"2025-07-01T11:22:58","date_gmt":"2025-07-01T04:22:58","guid":{"rendered":"https:\/\/www.oucru.org\/?p=47781"},"modified":"2025-11-05T17:04:22","modified_gmt":"2025-11-05T10:04:22","slug":"social-stigma-leprosy-2","status":"publish","type":"post","link":"https:\/\/www.oucru.org\/vi\/social-stigma-leprosy-2\/","title":{"rendered":"Shifting Public Perceptions Using Visual Storytelling: Community engagement to challenge leprosy-related stigma\u00a0"},"content":{"rendered":"\n<figure class=\"wp-block-image size-large\"><a href=\"https:\/\/www.oucru.org\/wp-content\/uploads\/2025\/07\/L1050909-copy-2.jpg\"><img fetchpriority=\"high\" decoding=\"async\" width=\"1024\" height=\"683\" src=\"https:\/\/www.oucru.org\/wp-content\/uploads\/2025\/07\/L1050909-copy-2-1024x683.jpg\" alt=\"\" class=\"wp-image-47828\" srcset=\"https:\/\/www.oucru.org\/wp-content\/uploads\/2025\/07\/L1050909-copy-2-1024x683.jpg 1024w, https:\/\/www.oucru.org\/wp-content\/uploads\/2025\/07\/L1050909-copy-2-300x200.jpg 300w, https:\/\/www.oucru.org\/wp-content\/uploads\/2025\/07\/L1050909-copy-2-768x512.jpg 768w, https:\/\/www.oucru.org\/wp-content\/uploads\/2025\/07\/L1050909-copy-2-1536x1024.jpg 1536w, https:\/\/www.oucru.org\/wp-content\/uploads\/2025\/07\/L1050909-copy-2.jpg 1575w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/a><figcaption class=\"wp-element-caption\"><em>\u201c<em>People affected by leprosy often face challenges in pursuing education or employment. a informatics student, shares a small student flat with her friends. Despite her illness, she remains determined to complete her degree. After graduation, she hopes to build her career, work in an office setting and become financially independent<\/em>\u201d<\/em>&nbsp;<\/figcaption><\/figure>\n\n\n\n<p>An estimated three to four million people across the world live with the long-term effects of leprosy. In Indonesia alone, more than 17,000 people are newly diagnosed with leprosy each year, ranking third globally after India and Brazil. Although effective treatment is available, leprosy continues to persist, particularly in low-resource areas where access to care is constrained.&nbsp;<\/p>\n\n\n\n<p>In many endemic regions in Indonesia, stigma remains deeply ingrained. Misconceptions and cultural beliefs associate leprosy with sin, shame or misfortune. These perceptions have changed very little since the earliest references to people with leprosy as outcasts.&nbsp;<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Visual narrative as engagement tool to address sensitive topics<\/strong><br><\/h2>\n\n\n\n<p>On the Island of Sumba in Eastern Indonesia, Oxford University Clinical Research Unit (OUCRU) Indonesia, responding to this challenge through research and community engagement to explore the local burden of leprosy and observed how a lack of knowledge led to fear and stigma towards affected people.&nbsp;<\/p>\n\n\n\n<p>In partnership with this community and a photographer, Yoppy Pieter, we used a <strong>visual storytelling approach to spotlight the positive aspects of people lives affected by leprosy<\/strong>. This project aimed:&nbsp;<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>to explore how we approach this sensitive topic differently in our community and public engagement program addressing knowledge gaps contributed to stigma.&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>to enable leprosy affected people frame their own lives by through visual storytelling across various media.&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>to shape public perceptions of leprosy, challenge social stigma, and promote greater inclusivity.&nbsp;<\/li>\n<\/ul>\n\n\n\n<p><\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Engagement through visual exhibition partnering with community, to bridge the communities to interact, share with the goal of mutual benefit.&nbsp;<\/h3>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Informed consent and ethical participation. <\/strong>Participants selected pseudonyms, approved the use of their images, and contributed their own written reflections. We used inclusive naming for participants as people living with leprosy rather than patients, in order to centre the person beyond the condition.&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Co-curated in-person exhibitions<\/strong> in Jakarta and Malang, attended by over 700 visitors. Several photographs were printed on transparent fabric, representing the often-unseen weight of stigma and reflected the strength of those whose stories were told. <strong>Online exhibition <\/strong>available <a href=\"https:\/\/www.invisibleburdenofleprosy.com\" target=\"_blank\" rel=\"noreferrer noopener\">www.invisibleburdenofleprosy.com<\/a> to extend the access to audiences beyond the region accross the world.&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Promotional awareness <strong>co-created with the leprosy scientist and non-scientist<\/strong> disseminated <strong>on digital media platforms, <\/strong>during significant public health moments, including World Leprosy Day and World Neglected Tropical Diseases Day, to reach more diverse audiences who may not engage with the topic.&nbsp;<\/li>\n<\/ul>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p><\/p>\n<\/blockquote>\n<\/blockquote>\n\n\n\n<div class=\"wp-block-media-text alignwide has-media-on-the-right is-stacked-on-mobile is-vertically-aligned-center\" style=\"grid-template-columns:auto 78%\"><div class=\"wp-block-media-text__content\">\n<p><em>\u201cPeople with leprosy develop physical disabilities, often feelings of seclusion and separation as effect of the disease. Yet, he continues to contribute to his community by helping with rice cultivation in the fields. His portrait reflects a deep sense of resilience, social connection and solidarity\u201d<\/em>&nbsp;<\/p>\n<\/div><figure class=\"wp-block-media-text__media\"><img decoding=\"async\" width=\"1024\" height=\"683\" src=\"https:\/\/www.oucru.org\/wp-content\/uploads\/2025\/07\/L1050819-copy-3-1024x683.jpg\" alt=\"\" class=\"wp-image-48043 size-full\" srcset=\"https:\/\/www.oucru.org\/wp-content\/uploads\/2025\/07\/L1050819-copy-3-1024x683.jpg 1024w, https:\/\/www.oucru.org\/wp-content\/uploads\/2025\/07\/L1050819-copy-3-300x200.jpg 300w, https:\/\/www.oucru.org\/wp-content\/uploads\/2025\/07\/L1050819-copy-3-768x512.jpg 768w, https:\/\/www.oucru.org\/wp-content\/uploads\/2025\/07\/L1050819-copy-3-1536x1024.jpg 1536w, https:\/\/www.oucru.org\/wp-content\/uploads\/2025\/07\/L1050819-copy-3.jpg 1575w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure><\/div>\n\n\n\n<div style=\"height:29px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<div style=\"height:31px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h2 class=\"wp-block-heading\">Impact of framing positive narrative: shifting public perception<\/h2>\n\n\n\n<p>Visitors found the photo stories powerful, moving, and informative, evoking a strong sense of humanity and hope. In particular, many shared they had never encountered people with leprosy before. Nevertheless, the stories felt intimate and alive.<\/p>\n\n\n\n<div class=\"wp-block-media-text is-stacked-on-mobile\"><figure class=\"wp-block-media-text__media\"><img decoding=\"async\" width=\"768\" height=\"1024\" src=\"https:\/\/www.oucru.org\/wp-content\/uploads\/2025\/07\/photo_2025-07-01_10-59-15-4-768x1024.jpg\" alt=\"\" class=\"wp-image-48046 size-full\" srcset=\"https:\/\/www.oucru.org\/wp-content\/uploads\/2025\/07\/photo_2025-07-01_10-59-15-4-768x1024.jpg 768w, https:\/\/www.oucru.org\/wp-content\/uploads\/2025\/07\/photo_2025-07-01_10-59-15-4-225x300.jpg 225w, https:\/\/www.oucru.org\/wp-content\/uploads\/2025\/07\/photo_2025-07-01_10-59-15-4.jpg 960w\" sizes=\"(max-width: 768px) 100vw, 768px\" \/><\/figure><div class=\"wp-block-media-text__content\">\n<p><br><strong>Reflections from visitors show that our different approach has succeeded<\/strong><br><br><em>\u2018The photo is bold and full of hope, beauty behind sorrow and with all her limitations,&nbsp;she was still motivated to continue her education.\u2019<\/em><\/p>\n\n\n\n<p><br><em>\u2018The photo captured her resilience, strength of character and fighting spirit.\u2019<\/em><\/p>\n\n\n\n<p><br><em>\u2018The photo was both moving and unsettling, conveying a deep sense of humanity and optimism.\u2019<\/em><\/p>\n<\/div><\/div>\n\n\n\n<p><\/p>\n\n\n\n<p>This embedded engagement research project shows that visual storytelling is a powerful participatory method for fostering meaningful dialogue with communities. By centring the voices of affected individuals, it helps challenge stigma and promote social inclusion. Ethical, image-based engagement complements medical interventions and strengthens inclusive health communication strategies in culturally sensitive contexts like Indonesia.<\/p>\n\n\n\n<p>For more information poster can be accessed below:&nbsp;<\/p>\n\n\n\n<figure class=\"wp-block-embed is-type-rich is-provider-issuu wp-block-embed-issuu\"><div class=\"wp-block-embed__wrapper\">\n<iframe title=\"How We Should Engage with Sensitive Topics Like Leprosy?\" src=\"https:\/\/e.issuu.com\/embed.html?u=oucruindonesia&#038;d=how_we_should_engage_with_sensitive_topics_like_le\" style=\"border:none; width: 800px; height: 613px;\" allow=\"clipboard-write,allow-top-navigation,allow-top-navigation-by-user-activation,allow-downloads,allow-scripts,allow-same-origin,allow-popups,allow-modals,allow-popups-to-escape-sandbox,allow-forms\"  allowfullscreen=\"true\"><\/iframe>\n<\/div><\/figure>\n\n\n\n<p>Image credit: The poster presented at the <a href=\"https:\/\/www.abdn.ac.uk\/events\/conferences\/pcst-2025\/\">Public and Communication Science Technology Conference<\/a> (PCST) 2025<\/p>\n\n\n\n<p>Interested in collaborating on public and community engagement in health research? Contact <a href=\"mailto:PCE_Indonesia@oucru.org\">PCE_Indonesia@oucru.org<\/a> to explore partnership opportunities.<\/p>\n\n\n\n<div style=\"height:75px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n","protected":false},"excerpt":{"rendered":"<p>Leprosy continues to affect millions worldwide, with Indonesia ranking third in new diagnoses. Despite available treatments, stigma rooted in cultural beliefs still limits access to care and fuels discrimination, especially in endemic regions. How to address this sensitive topics using a visual storytelling approach in Indonesia?<\/p>\n","protected":false},"author":49,"featured_media":47788,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":"","_links_to":"","_links_to_target":"","_wp_rev_ctl_limit":""},"categories":[294],"tags":[589],"class_list":["post-51430","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-indonesia-vi","tag-ket-noi-khoa-hoc-voi-cong-chung"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.3.1 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Shifting Public Perceptions Using Visual Storytelling: Community engagement to challenge leprosy-related stigma\u00a0 - OUCRU<\/title>\n<meta name=\"description\" content=\"Leprosy remains a public health issue in Indonesia. 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