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Leprosy-Related Stigma and Social Representations Among Persons Affected by Leprosy and Primary Healthcare
Francisco Albino de Araújo1, Vinicius Silva Dos Santos2, Woska Pires da Costa3,4
1Post-Graduate Program in Health Sciences, Faculdade de Medicina do ABC (FMABC), Príncipe de Gales Avenue, No. 821, Vila Príncipe de Gales, SP, 09060-650, Santo André, Brazil. francisalbino@gmail.com.
Abstract:
Leprosy remains a persistent public health challenge not only because transmission continues in endemic settings, but also because stigma remains embedded in social relations, institutional practices, and historical forms of exclusion. This study analyzes the social representations of leprosy among persons affected by leprosy and primary healthcare professionals in a historically endemic area of the Brazilian Amazon, with particular attention to how these representations shape disease recognition, stigma, and care. An exploratory mixed-methods design combined structured questionnaires with a Free Word Association Test to investigate shared meanings of leprosy among 34 persons affected by leprosy (age available for 23 participants; range, 20-85 years) and 19 primary healthcare professionals. Findings show that leprosy is socially understood less through biomedical curability than through stigma, visible bodily damage, and exclusionary meanings, reflected in candidate central elements such as "prejudice", "deformity", and "pain". Although most affected participants recognized that leprosy is curable, substantial knowledge gaps were identified, particularly regarding transmission pathways. Similar limitations were observed among healthcare professionals, indicating weaknesses in diagnostic preparedness within primary healthcare. These results suggest that stigma in leprosy cannot be reduced to insufficient knowledge alone, but should instead be understood as a biosocial phenomenon produced through the interaction of social meanings, embodied experience, and institutional conditions. These dynamics may contribute to delayed diagnosis and reinforce the continued neglect of the disease, requiring integrated strategies that go beyond biomedical control, strengthen primary healthcare, and transform the social and institutional conditions that sustain stigma, diagnostic delay, and exclusion.
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