Leprosy in Colombia: A look from life experience.

Leprosy continues to be stigmatized, causing harm to fundamental rights, pain and hopelessness in those who have suffered from it and their families. From its relationship with public and mental health, effective strategies must be implemented to reduce stigma and unlearn myths and wrong perceptions, support families, and improve quality of life through early care and detection. This article shows that those affected by leprosy are capable, functional people with much to contribute to society anywhere in the world.

Experiences of social stigma of people living with Hansen's disease in Brazil: silencing, secrets and exclusion.

BACKGROUND: Hansen's disease is a chronic, infectious and transmissible disease that is considered a public health problem in Brazil. Hansen's disease is marked by stigma and prejudice, because it carries with it a strong negative social image, reinforced by policies of social isolation in the community. METHODS: A qualitative study was conducted in Ribeirão Preto, an inland city of the state of São Paulo, Brazil. Eleven patients under treatment for the disease were interviewed. The interviews were audio recorded and transcribed in full, then were analyzed through the stages of transcription, transposition and reconstitution, as informed by concepts proposed by Goffman. RESULTS: The results showed that the marks of stigma are still present in the twenty-first century and were presented in two axes: 'Stigma and work for the person affected by Hansen's disease' and 'The experience of stigma in the family'. The participants refer to fears of losing their jobs and of being ridiculed, which stops them talking about the disease. Regarding their families, the participants reported episodes of discrimination, the creation of family secrets and fear of relatives' reactions. CONCLUSIONS: All these aspects interfere in the follow-up and treatment of patients and need to be considered and welcomed by health professionals. It is recommended that these aspects are addressed in the initial training and continuing education of health professionals. CONTEXTE: La maladie de Hansen est une maladie chronique, infectieuse et transmissible, considérée comme un problème de santé publique au Brésil. La maladie de Hansen est marquée par la stigmatisation et les préjugés, car elle véhicule une image sociale fortement négative, renforcée par des politiques d'isolement social au sein de la communauté. MÉTHODES: Étude qualitative menée à Ribeirão Preto, une ville intérieure de l'État de São Paulo, au Brésil. Onze patients traités pour la maladie ont été interrogés. Les entretiens ont été enregistrés et transcrits intégralement, et ont été analysés en suivant les étapes de transcription, de transposition et de reconstitution, selon les concepts proposés par Goffman. RÉSULTATS: Les résultats montrent que les marques de la stigmatisation sont toujours présentes au 21ème siècle et ont été présentées selon deux axes : 'La stigmatisation et le travail pour la personne affectée par la maladie de Hansen' et 'L'expérience de la stigmatisation dans la famille'. Les participants évoquent la peur de perdre leur emploi, la peur d'être ridiculisés, ce qui les pousse à ne pas parler de la maladie. En ce qui concerne les familles, les participants ont rapporté des épisodes de discrimination, la création de secrets de famille et la peur des réactions des proches. CONCLUSIONS: Tous ces aspects interfèrent dans le suivi et le traitement des patients et doivent être pris en compte et accueillis par les professionnels de la santé. Il est recommandé que ces aspects soient abordés dans la formation initiale et la formation continue des professionnels de la santé. ANTECEDENTES: La enfermedad de Hansen es una enfermedad crónica, infecciosa y transmisible, considerada un problema de salud pública en Brasil. La enfermedad de Hansen está marcada por el estigma y el prejuicio, ya que conlleva una fuerte imagen social negativa, reforzada por políticas de aislamiento social en la comunidad. MÉTODOS: Estudio cualitativo realizado en Ribeirão Preto, una ciudad del interior del estado de São Paulo, Brasil. Se entrevistaron a once pacientes en tratamiento para la enfermedad. Las entrevistas fueron grabadas en audio, transcritas en su totalidad y analizadas a través de etapas de transcripción, transposición y reconstitución, según los conceptos propuestos por Goffman. RESULTADOS: Los resultados muestran que las marcas del estigma siguen presentes en el siglo XXI y se presentaron en dos ejes: 'Estigma y trabajo para la persona afectada por la enfermedad de Hansen' y 'La experiencia del estigma en la familia'. Los participantes mencionan el miedo a perder sus trabajos, el temor a ser ridiculizados, lo que les impide comentar sobre la enfermedad. En cuanto a las familias, los participantes reportaron episodios de discriminación, la creación de secretos familiares y el miedo a las reacciones de los familiares. CONCLUSIONES: Todos estos aspectos interfieren en el seguimiento y tratamiento de los pacientes y deben ser considerados y acogidos por los profesionales sanitarios. Se recomienda abordar estos aspectos en la formación inicial y la educación continua de los profesionales sanitarios.

Clofazimine-induced cutaneous hyperpigmentation as a source of stigma in the treatment of leprosy: A cross-sectional study.

OBJECTIVES: Cutaneous hyperpigmentation is one of the main adverse effects encountered in patients undergoing leprosy treatment with multidrug therapy (WHO-MDT). This adverse effect has been described as intolerable and capable of contributing to social stigma. The objectives of this study were to quantify the variation in skin colour induced by clofazimine during and after treatment and to assess the related stigma. METHODS: This observational cross-sectional study objectively measured skin colour in 51 patients by reading the individual typology angle (ITA°) with a spectrophotometer, followed by the application of the Stigma Scale of the Explanatory Model Interview Catalogue (EMIC). RESULTS: Skin hyperpigmentation was observed in 100% of the individuals. They showed more negative ITA° values in lesion areas than non-lesion areas, particularly in sun-exposed regions. Clofazimine-induced cutaneous hyperpigmentation was not homogeneous and seemed to follow the lesion locations. The mean EMIC score was 18.8 points. CONCLUSION: All patients presented skin hyperpigmentation caused by clofazimine, detectable through spectrophotometry. Hyperpigmentation strongly impacted the social domain, indicating the intersectionality of disease and skin colour stigma, contributing to the social isolation of these patients. Health authorities should consider the negative impact of clofazimine on treatment adherence.

Dificuldades no enfrentamento da hanseníase no tratamento e pós-alta / Difficulties coping with leprosy during treatment and post-discharge

Objetivo: Identificar as principais dificuldades durante o tratamento e pós-alta de pacientes com hanseníase atendidos na Atenção Secundária em Teresina-Piauí e seu perfil epidemiológico. Métodos: Trata-se de um estudo transversal, quantitativo, que identificou necessidades e levantou dados de pacientes em tratamento de hanseníase em um serviço de referência localizado em Teresina-Piauí. Resultados: Na amostra, observou-se predomínio de pacientes do sexo masculino (58,5%), casados ou em união estável (54,7%), com ensino fundamental completo (62,3%), renda de 1 a 2 salários mínimos (66,0%) e residentes em Teresina-Piauí (90,6%). A idade média dos pacientes foi 53 anos. 9,4% abandonaram o tratamento. No pós-alta, 90,6% dos pacientes apresentaram algum tipo de sequela. Notou-se que a ausência de conhecimento sobre a hanseníase retardou o acesso ao sistema de saúde. Verificou-se associação significativa entre a variável presença de sequela e alteração de sensibilidade (p=0,014). Os relatos de preconceito foram mais frequentes durante o tratamento (41,5%), em relação ao pós-alta (15,1%). Conclusão: A hanseníase ainda é uma doença negligenciada, estigmatizada e de difícil diagnóstico, sendo necessário maiores investimentos em políticas públicas para a difusão de conhecimentos sobre a doença. Descritores: Hanseníase; Terapêutica; Perfil de Saúde; Conhecimento; Estigma Social.

Objective: To identify the main difficulties and the epidemiological profile during treatment and post-discharge in patients with leprosy treated at the Secondary Care level in Teresina-Piauí.Methods: This is a cross-sectional and quantitative study that identified needs and surveyed data from patients undergoing leprosy treatment in a reference service located in Teresina-Piauí.Results: In the sample, there was predominance of male patients (58.5%), married or in a stable union (54.7%), with complete Elementary School (62.3%), incomes of 1 to 2 minimum wages (66.0%) and residents of Teresina-Piauí (90.6%). The mean age of the patients was 53years old. 9.4% abandoned the treatment. 90.6% of the patients presented some type of sequelae post-discharge. It was noticed that lack of knowledge about leprosy delayed access to the health system. A significant association was verified between the "presence of sequelae" variable and change in sensitivity (p = 0.014). The reports about prejudice were more frequent during the treatment (41.5%) than in the post-discharge period(15.1%). Conclusion: Leprosy is still a neglected, stigmatized and difficult to diagnose disease, with a need for greater investments in public policies to disseminate knowledge about the disease. Descriptors: Leprosy; Therapy; Health Profile; Knowledge; Social Stigma.

Impact of basic psychological support on stigma and the mental well-being of people with disabilities due to leprosy and lymphatic filariasis: a postintervention evaluation study.

BACKGROUND: A peer support intervention, called basic psychological support for people affected by neglected tropical diseases (BPS-N), was piloted in India to improve mental well-being and social participation and to reduce stigma among people with disabilities due to leprosy or lymphatic filariasis. Preintervention and postintervention assessments showed improvements in mental well-being and reductions in depression and stigma. This study aimed to further evaluate this intervention at approximately 2 mo after its completion. METHODS: Scales were administered to 62 clients to measure stigma, depression, mental well-being and participation levels. Interviews with 13 clients and six peer supporters were conducted. RESULTS: Stigma scores were significantly reduced at 2 mo postintervention compared with preintervention and postintervention. The improvement in mental well-being detected at immediate postintervention had not changed significantly 2 mo later. Depression levels were higher than at postintervention, but lower than at preintervention levels. No significant differences were found in median participation scores, but the number of clients with moderate and severe participation restrictions reduced significantly from postintervention to 2 mo follow-up. Qualitative results showed that clients received information about their condition and treatment, and that some experienced positive effects on their emotions and self-esteem. CONCLUSIONS: This study provides additional evidence on the proof of concept of BPS-N. CONTEXTE: Une intervention de soutien par les pairs, appelée Soutien psychologique de base pour les personnes atteintes de maladies tropicales négligées (BPS-N), a été pilotée en Inde afin d'améliorer le bien-être mental et la participation sociale, et de réduire la stigmatisation, chez les personnes souffrant d'incapacités dues à la lèpre ou à la filariose lymphatique. Les évaluations avant et après l'intervention ont montré une amélioration du bien-être mental et une réduction de la dépression et de la stigmatisation chez ces personnes. Cette étude avait pour but d'évaluer cette intervention environ 2 mois après son achèvement. MÉTHODES: Des échelles ont été administrées à 62 clients pour mesurer la stigmatisation, la dépression, le bien-être mental et les niveaux de participation. Des entretiens ont été menés avec 13 clients et 6 pairs aidants. RÉSULTATS: Les scores de stigmatisation ont été significativement réduits deux mois après l'intervention par rapport à la situation avant et après l'intervention. L'amélioration du bien-être mental détectée immédiatement après l'intervention n'a pas changé de manière significative deux mois plus tard. Les niveaux de dépression étaient plus élevés qu'après l'intervention, mais plus bas qu'avant l'intervention. Aucune différence significative n'a été constatée dans les scores médians de participation, mais le nombre de clients ayant des restrictions de participation modérées et sévères a diminué de manière significative entre la période post-intervention et les deux mois de suivi. Les résultats qualitatifs ont montré que les clients ont reçu des informations sur leur état et leur traitement, et que certains ont ressenti des effets positifs sur leurs émotions et leur estime de soi. CONCLUSIONS: Cette étude a fourni des preuves supplémentaires de l'efficacité de la BPS-N. INTRODUCCIÓN: Una intervención de apoyo entre iguales, denominada Apoyo Psicológico Básico para personas afectadas por enfermedades tropicales desatendidas (BPS-N), se puso a prueba en la India para mejorar el bienestar mental y la participación social y reducir el estigma entre las personas con discapacidades debidas a la lepra o la filariasis linfática. Las evaluaciones previas y posteriores a la intervención mostraron mejoras en el bienestar mental y reducciones en la depresión y el estigma. El objetivo de este estudio era seguir evaluando esta intervención ∼2 meses después de su finalización. MÉTODOS: Se administraron escalas a 62 clientes para medir el estigma, la depresión, el bienestar mental y los niveles de participación. Se realizaron entrevistas con 13 clientes y 6 compañeros de apoyo. RESULTADOS: Las puntuaciones de estigma se redujeron significativamente a los 2 meses de la intervención, en comparación con antes y después de la misma. La mejora del bienestar mental detectada inmediatamente después de la intervención no había cambiado significativamente 2 meses después. Los niveles de depresión eran más altos que en el postintervención, pero más bajos que en el preintervención. No se encontraron diferencias significativas en las puntuaciones medias de participación, pero el número de clientes con restricciones de participación moderadas y graves se redujo significativamente entre el periodo posterior a la intervención y los 2 meses de seguimiento. Los resultados cualitativos mostraron que los clientes recibieron información sobre su enfermedad y tratamiento, y que algunos experimentaron efectos positivos en sus emociones y autoestima. CONCLUSIONES: Este estudio aportó pruebas adicionales sobre la prueba de concepto de la BPS-N.

Steps towards eliminating Hansen's disease stigma.

Persons affected by Hansen's disease (PAHD) can develop long-term physical disabilities and psychological problems if the disease is not managed promptly and correctly. The complex and multi-faceted nature of stigma related to Hansen's Disease, and the discrimination arising from it, demands multiple parallel steps to improve the health, well-being and lived experience of People Affected by Hansen's Disease, including: 1) adoption and pursuance of a human rights based approach; 2) revocation of discriminatory laws; 3) education and training for healthcare workers; 4) new techniques and therapies to diagnose and treat HD without side-effects and to reduce risk of disabilities; 5) elimination of stigmatising terminology.

Culture circle with community health workers about (lack of) knowledge and stigma of leprosy.

OBJECTIVE: To describe the construction aboutthe (lack of) knowledge and stigma of leprosy by Community Health Workers participating in the Culture Circle. METHOD: Qualitative, action-research type study supported by the Paulo Freire Culture Circle framework, carried out with 21 Community Health Workers. Data collected in November 2021, in the municipality of São Luís, Maranhão. The following categories were evidenced: knowledge about leprosy, signs and symptoms, stigma. RESULTS: The participants had knowledge about the disease, but they verbalized people's disinformation about leprosy, disbelief in relation to the cure, and situations of prejudice and stigma that are still present today. FINAL CONSIDERATIONS: The culture circle enabled the intertwining of scientific and empirical knowledge in the construction of a critical and reflective knowledge committed to welcoming and comprehensive care for people and families affected by leprosy.

Stigma towards leprosy across seven life domains in Indonesia: a qualitative systematic review.

OBJECTIVE: To provide knowledge about the domains of life affected by stigma towards leprosy in Indonesia, including its manifestations, driving factors and consequences. DESIGN: Qualitative systematic review. STUDY SELECTION: PubMed, CINAHL, ProQuest, Taylor&Francis and Google Scholar were used to systematically search studies with qualitative component that were conducted in Indonesia and published from January 2000 to December 2020 in English or Indonesian language. The search was started in November 2020 and reran in April 2021. Quality assessment and thematic synthesis were applied. DATA EXTRACTION: Of the 3184 studies, 37 manuscripts were reviewed. Information relating to study characteristics, stigma domains and types following Weiss Extended Scambler's Hidden Stress Model, stigma consequences and drivers were extracted. RESULTS: Seven themes were identified. Three themes-community, domestic and intimate relationships-impacted private domains. Four themes-health, economics, education and public entitlements-concerned public domains. Studies mainly discussed enacted stigma rather than anticipated and internalised stigma. Ten stigma-driving factors were found, ranging from negative and positive concepts linked with the condition to aspects not related to the disease process. Five areas of consequences were shown. Impact on public rights, such as education, was very minimally explored, although school absence was often mentioned. Stigma manifestation, drivers and consequences in most public domains were least explored. CONCLUSION: Leprosy-affected persons in Indonesia experienced and felt stigma in private and public domains. Disease-related aspects, the culture and history of a particular region are linked with stigma manifestations. Approaches in one domain can affect another domain. More exploratory studies are needed in the endemic areas outside Java, especially considering both the lack of studies there and the unique culture of each Indonesian region.

Understanding leprosy reactions and the impact on the lives of people affected: An exploration in two leprosy endemic countries.

BACKGROUND: Leprosy reactions, Type-1 and erythema nodosum leprosum, are immune-mediated complications of leprosy, which play a significant role in the morbidity associated with the disease. A considerable amount of literature has been published on the impact of leprosy in general but few studies focus specifically on leprosy reactions. This study aimed to investigate the impact of leprosy reactions on physical, psychological, and social aspects of the lives of people affected by analysing their life experiences and perspectives about leprosy reactions. METHODS/PRINCIPAL FINDINGS: This qualitative study involved people affected by leprosy reactions and their family members in two leprosy endemic countries. The data were collected through 66 interviews and 9 focus group discussions (4-6 participants each) in Surabaya, Indonesia, and Purulia, India. Content analysis and conversational analysis were performed. This study found that both types of leprosy reactions were perceived as an unpredictable and painful condition. Leprosy reactions restricted physical activities of the participants, such as going to bathroom, sleeping, eating, and cooking. In the interviews, the respondents expressed a range of emotions and feelings including confusion, sadness, anxiety, and anger. Some recounted that they felt stigmatized and lost opportunities to socialise and earn money. Differences between the two settings were identified. The majority of Indonesian participants preferred to stay at home, and some concealed the diagnosis of leprosy, while most of the Indian respondents continued working up to the time of hospitalization. CONCLUSION: Leprosy reactions are a distressing complication of leprosy and adversely affect the lives of those affected. Individuals reported physical discomfort, distress, anxiety, stigma, and financial hardship and these negative impacts in the physical, psychological, and social spheres reinforced each other. These findings provide important information about a need for early detection and sustained commitment to follow-up care for people with a history of leprosy reactions. More research on new drugs for reactional episodes, tools to measure knowledge, attitude, and practice, and costing study on leprosy reactions treatment are needed. We recommend the development and testing of holistic strategies to improve the management of leprosy reactions.

Sociodiscursive representations about leprosy in educational campaigns: implications on stigma reduction.

OBJECTIVES: to analyze the socio-discursive representations about leprosy produced in posters of educational campaigns of the Brazilian Ministry of Health. METHODS: a documentary and discursive research about posters of campaigns about leprosy produced by the Brazilian Ministry of Health and available on Google Search Images. For the analysis, we used the Critical Discourse Analysis approach and the Grammar of Visual Design. RESULTS: the socio-discursive representations of leprosy are based on the biomedical ideology, through a normative-curative discourse that focuses on the dermatological manifestations of the disease. Regarding the construction of the compositional space, there are posters that emphasize the meaning that the disease does not prevent affectionate relationships, and others highlight as "new" the clinical manifestations of the disease. FINAL CONSIDERATIONS: the normative-curative discourse produced in the campaigns is not enough to face stigma related to the disease. For leprosy to be understood as a common chronic disease, it is first necessary to fight the "social leprosy": the stigma.

Community intervention programmes with people affected by leprosy: Listening to the voice of professionals.

BACKGROUND: Community participation and implementing interventions based on the community are key strategies to eliminate leprosy. Health professionals have an essential role as they are a necessary source of information because of their knowledge and experience, as well as their comprehensive perspective of contexts included in the programmes. This study has the aim of analysing the perceptions on the development of programmes with people affected by leprosy from the perspective of professionals that work at different organisations in endemic contexts. METHODOLOGY: A qualitative study was carried out with the written response to an open question questionnaire which was sent by email. The script content was related to positive aspects and difficulties in daily work, participation from the community in activities, contribution to gender equality and programme sustainability. 27 health professionals were interviewed, 14 women and 13 men, all of which belonged to 16 organisations in India and Brazil. Once the content of the interviews was analysed, two main topics emerged: barriers perceived by professionals and proposals to improve the sustainability of the programmes. PRINCIPAL FINDING: Professionals identify barriers related to social stigma, inequalities, gender inequalities, difficulty managing the disease, limited services, lack of resources and lack of community participation. Furthermore, some necessary recommendations were taken into account to improve programme development related to: Eliminating stigma, reaching gender equality, developing adequate and effective services, guaranteeing adequate and quality resources and achieving compassion among professionals. CONCLUSIONS: Although introducing community programmes with people affected by leprosy has a long history in countries such as India and Brazil, there are still several barriers that can hinder their development. Based on the specific needs of the contexts, recommendations are suggested that, with the involvement of all parties and with sensitive approaches towards human rights and gender, they could help to guarantee universal health coverage and the sustainability of said programmes.

Initiatives to address leprosy as a human rights issue through the mandate of UN Special Rapporteur: Achievements and challenges.

Leprosy, or Hansen's disease, is one of the oldest infectious diseases in the world. It has long been associated with stigma and discrimination, but only in recent years has this aspect been formally recognized by the international community as a human rights issue. The UN Human Rights Council first adopted a resolution on leprosy in 2008, and this was later followed by a UN General Assembly resolution in 2010. Nonbinding principle and guidelines on elimination of discrimination against persons affected by leprosy and their family members accompanied the 2010 resolution, but these have yet to be fully implemented. In 2017, the Human Rights Council appointed a Special Rapporteur on leprosy to investigate the extent to which the principles and guidelines have been implemented, and her term was extended for a further 3 years in 2020. Considering the proper implementation of the principles and guidelines to be key to eliminating the discrimination that persons affected by leprosy and their families face in various parts of the world, this paper looks at the contribution the Special Rapporteur can make. Based on an assessment of her activities to date, it concludes that the Special Rapporteur has actively worked to build networks with persons affected by leprosy and related organizations and gain their trust, but has faced challenges in organizing official country visits. It goes on to analyze what sort of legacy the Special Rapporteur should aim to leave behind after completing her second term and how she can go about doing so in the time remaining. To this end, it makes 5 suggestions: (1) gather information systematically on the actual situation of discrimination; (2) compile a collection of success stories; (3) ensure that there is consistency between legally binding international covenants and treaties and the principles and guidelines; (4) present proposals for concrete actions that can be taken after the Special Rapporteur's second term ends; and (5) initiate a feasibility study on creating an "index" and "indicators" to measure the current status of stigma and discrimination and the extent to which the principles and guidelines have been implemented.

Lepra (enfermedad de Hansen) / Hanseníase / Leprosy (Hansen’s disease)

La campaña #United4Dignity hace una llamada a la unidad para defender la dignidad de las personas que han padecido lepra. La campaña rinde homenaje a las experiencias vividas por personas que han pasado la lepra al 1) compartir sus historias de empoderamiento y 2) abogar por el bienestar mental y el derecho a una vida digna sin el estigma de la lepra.

Stakeholder perspectives on an integrated package of care for lower limb disorders caused by podoconiosis, lymphatic filariasis or leprosy: A qualitative study.

BACKGROUND: Lower limb disorders including lymphoedema create a huge burden for affected persons in their physical and mental health, as well as socioeconomic and psychosocial consequences for them, their families and communities. As routine health services for the integrated management and prevention of lower limb disorders are still lacking, the 'Excellence in Disability Prevention Integrated across Neglected Tropical Diseases' (EnDPoINT) study was implemented to assess the development and delivery of an integrated package of holistic care-including physical health, mental health and psychosocial care-within routine health services for persons with lower limb disorders caused by podoconiosis, lymphatic filariasis and leprosy. METHODOLOGY/PRINCIPAL FINDINGS: This study was part of the first of three phases within EnDPoINT, involving the development of the integrated care package. Focus group discussions and key informant interviews were undertaken with 34 participants between January-February 2019 in Awi zone, Ethiopia, in order to assess the draft care package's feasibility, acceptability and appropriateness. Persons affected by lower limb disorders such as lymphoedema experience stigma, exclusion from families, communities and work as well as physical and financial hardship. Beliefs in disease causation inhibit affected persons from accessing care. Ignorance was a barrier for health care providers as well as affected persons. Training and education of affected persons, communities and caregivers is important in improving care access. It also requires time, space, materials and financial resources. Both top-down and grass roots input into service development are key, as well as collaboration across stakeholders including charities, community leaders and "expert patients". CONCLUSIONS/SIGNIFICANCE: This study highlighted the need for the EnDPoINT integrated care package and provided suggestions for solutions according to its three aspects of integrated care (integration into routine care; integration of mental health and psychosocial care; and integration of care across the three diseases), thereby giving support for its feasibility, acceptability and appropriateness.

How do Positive Deviants Overcome Health-Related Stigma? An Exploration of Development of Positive Deviance Among People With Stigmatized Health Conditions in Indonesia.

A constructivist grounded theory approach was used to understand how some people living with stigmatized health conditions develop positive deviance to overcome stigma. We examined interviews from 13 identified positive deviants living with four different stigmatized health conditions (HIV, leprosy, schizophrenia, and diabetes) in Indonesia. Positive deviance develops in the form of psychological empowerment through improvement of self-belief and perception (intrapersonal component), development of understanding and skill to exert control in life (interactional component), and self-discovery of successful behaviors and strategies to avert stigma (behavioral component). Positive deviants, after being empowered, start empowering others affected by sharing their knowledge and fostering social awareness and acceptance. The findings revealed the presence of problem-solving ability and agency within the community of stigmatized individuals in Indonesia and warrant researchers to partner with the community to expedite the diffusion of transferable positive deviant strategies within and outside the communities.

Diálogos sobre a descentralização do programa de controle da hanseníase em município endêmico: uma avaliação participativa / Diálogos sobre la descentralización del programa de control de la lepra en un municipio endémico: una evaluación participativa / Dialogues on the decentralization of the leprosy control program in an endemic municipality: a participatory evaluation

Resumo Objetivo avaliar a descentralização do Programa de Controle da Hanseníase (PCH) em Governador Valadares. Método o referencial teórico-metodológico foi a Avaliação de Quarta Geração, de abordagem qualitativo-participativa. O estudo envolveu 30 sujeitos divididos em quatro grupos: gestores do PCH; profissionais do Centro de Referência (CR); profissionais da atenção básica e usuários. Os dados foram coletados por entrevistas, utilizando-se a técnica do Círculo Hermenêutico-Dialético. Posteriormente, realizaram-se três oficinas de validação e negociação dos dados. Utilizou-se o Método Comparativo Constante para a análise. Resultados evidenciou-se a manutenção do modelo vertical de atenção à hanseníase, sustentado por determinantes sócio-histórico-culturais que se expressam: na permanência da porta de entrada à demanda espontânea no CR; no encaminhamento rotineiro do usuário para a atenção secundária; na ineficiência da contrarreferência; na centralização da poliquimioterapia; na crença na necessidade do atendimento especializado e no estigma. Evidenciaram-se fragilidades no vínculo com a atenção primária. Conclusão a descentralização do PCH envolve a tensão entre os atores de cada ponto de atenção à saúde, gerando disputas de saberes e práticas de saúde. Implicações para a prática a sustentabilidade da descentralização requer envolvimento político e institucional focado no fortalecimento da atenção primária, na reorientação do papel dos serviços na rede de atenção à hanseníase e na educação em saúde.

Resumen Objetivo evaluar la descentralización del Programa de Control de la Lepra (PCL) en Governador Valadares. Método el marco teórico-metodológico fue la Evaluación de Cuarta Generación, con un enfoque cualitativo-participativo. El estudio involucró a 30 sujetos, divididos en cuatro grupos: gerentes del PCL; profesionales del Centro de Referencia (CR); profesionales de atención primaria y usuarios. Los datos fueron recolectados a través de entrevistas, utilizando la técnica del Círculo Hermenéutico-Dialéctico. Posteriormente se realizaron tres talleres de validación y negociación de los datos. Para el análisis se utilizó el Método Comparativo Constante. Resultados se evidenció el mantenimiento del modelo vertical de atención a la lepra, sustentado en determinantes socio-histórico-culturales que se expresan en la permanencia del ingreso a la demanda espontánea en el CR; en la derivación rutinaria del usuario a atención secundaria; en la ineficiencia de la contrarreferencia; en la centralización de la poliquimioterapia; en la creencia en la necesidad de atención especializada y en el estigma. Se evidenciaron debilidades en el vínculo con la atención primaria. Conclusión la descentralización del PCH involucra la tensión entre los actores en cada punto de la atención en salud, generando disputas sobre conocimientos y prácticas de salud. Implicaciones para la práctica la sostenibilidad de la descentralización requiere de una participación política e institucional, enfocada en el fortalecimiento de la atención primaria, reorientando el rol de los servicios en la red de atención a la lepra y en la educación para la salud.

Abstract Objective to evaluate the decentralization of the Leprosy Control Program (LCP) in Governador Valadares. Method the theoretical and methodological framework was the Fourth Generation Evaluation, with a qualitative-participatory approach. The study involved 30 subjects divided into four groups: managers of the LCP; professionals of the Reference Center (RC); primary care professionals and users. Data were collected through interviews, using the Hermeneutic-Dialectic Circle technique. Subsequently, three workshops were held for data validation and negotiation. The Constant Comparative Method was used for the analysis. Results the maintenance of the vertical model of leprosy care was evidenced, sustained by social-historical-cultural determinants that are expressed in: the permanence of the gateway to spontaneous demand in the RC; the routine referral of the user to secondary care; the inefficiency of counter-reference; the centralization of multidrug therapy; the belief in the need for specialized care, and stigma. Weaknesses in the link with primary care were evidenced. Conclusion and implications for practice The sustainability of decentralization requires political and institutional involvement focused on strengthening primary care, reorienting the role of the services in the leprosy care network, and health education. The decentralization of the LCP involves tension between the actors of each health care point, generating disputes of knowledge and health practices.

Nem tudo o que reluz é ouro: análise discursiva das campanhas educativas sobre a hanseníase / All that glitters is not gold: discursive analysis of educational campaigns on leprosy

A hanseníase é uma doença infectocontagiosa de caráter crônico cuja transmissão ocorre, preferencialmente, pelo contato prolongado de um indivíduo susceptível com as secreções das vias aéreas de um indivíduo doente. Manifesta-se principalmente por lesões na pele, olhos e comprometimento de nervos periféricos que se não tratados precocemente, podem evoluir para incapacidade física. Essas incapacidades físicas são os principais aspectos estgmatizantes da hanseníase, ainda atrelados à concepções divinas. Nesse sentido, notas-se que a hanseníase é uma doença conhecida, porém, pouco compreendida pela população. Por isso, torna-se fundamental pesquisar sobre o potencial educativo e transformador dessas campanhas, se agem como obstáculo à transformação do estigma sobre a doença ou se são potencialmente transformadoras. Este estudo teve como objetivo analisar as representações sociodiscursivas das campanhas sobre hanseníase produzidas e circuladas pelo Ministério da Saúde; identificar e analisar os discursos produzidos nos cartazes das campanhas sobre hanseníase do Ministério da Saúde; identificar os aspectos da conjuntura social acerca da representação da hanseníase; analisar como as campanhas representam em sua linguagem multimodal a doença e as pessoas afetadas pela hanseníase; analisar e explanar criticamente sobre o potencial educativo e transformador das campanhas sobre hanseníase: agem como obstáculo à transformação do estigma sobre a doença ou são potencialmente transformadoras. Foi realizada uma pesquisa documental e discursiva sobre cartazes de campanhas sobre hanseníase, produzidas pelo Ministério da Saúde entre 2010 e 2021, disponibilizadas no Google Search Imagens, Ministério da Saúde, Movimento de Reintegração das Pessoas Atingidas pela Hanseníase, DHAW e Fundação Oswaldo Cruz. Para análise do texto verbal foi utilizada a abordagem discursivo-crítica dialético-relacional de Norman Fairclough. Já a análise das imagens foi feita por meio da Gramática do Design Visual de Gunther Kress e Theo van Leeuwen para análise das imagens. Ao analisar os recursos semióticos produzidos nos 17 cartazes que compõem o corpus dessa pesquisa identificamos a articulação entre os discursos biomédico, pedagógico-instrutivo e do autocuidado. A multimodalidade dos cartazes constrói uma ideia positiva da doença, ao destacar imagens de corpos "saudáveis" em contato físico e cores que representam boas vibrações. Velam a realidade da vivência da doença ao desconsiderarem aspectos sociais importantes que envolvem a hanseníase. Contruir uma nova imagem para uma doença tão antiga não é um desafio fácil, principalmente quando se mantem relações com senso comum, permeado de estigmas. As escolhas feitas para a construção dos cartazes buscam reafirmar a hegemonia do saber biomédico influenciado pelo modelo cartesiano que reduz e fragmenta o corpo em partes, como se essas partes fossem mais importantes que o todo. Esse discurso foi construído na tentativa de imprimir na hanseníase a ideologia de uma doença crônica comum, desconsiderando todo seu percurso histórico cultural, que atualmente, representa um dos desafios no controle da doença no Brasil. Os discursos do autocuidado e pedagógico instrutivo buscam transferir para a sociedade a responsabilidade de procurarem pelo diagnóstico e tratamento da doença, que por muito tempo, estiveram sob responsabilidade do Estado

Leprosy is a chronic infectious disease whose transmission occurs, preferably, through prolonged contact of a susceptible individual with secretions from the airways of a sick individual. It is mainly manifested by lesions in the skin, eyes and impairment of peripheral nerves that, if not treated early, can progress to physical disability. These physical disabilities are the main stigmatizing aspects of leprosy, still linked to divine conceptions. In this sense, it is noted that leprosy is a known disease, however, little understood by the population. Therefore, it is essential to research the educational and transforming potential of these campaigns, whether they act as an obstacle to the transformation of the stigma about the disease or whether they are potentially transformative.To analyze the socio-discursive representations of leprosy campaigns produced and propagated by the Ministry of Health; to identify and analyze the discourses contained within the posters of the Ministry of Health's leprosy campaigns; to perform an identify of the social conjuncture on the representation of leprosy; analyze how campaigns represent the disease and the people affected by it in their multimodal language; critically analyze and explain the educational and transforming potential of leprosy campaigns: if they act as an obstacle to the transformation of the stigma about the disease or if they are potentially transformative. Documentary and discursive research on leprosy campaign posters, produced by the Ministry of Health between 2010 and 2021, available on Google Search Images, MS, MORHAN, DHAW, and FIOCRUZ. For verbal text analysis, Norman Fairclough's dialectical-relational approach to critical discourse was used. Image analysis was carried out using the Grammar of Visual Design by Gunther Kress and Theo van Leeuwen. The socio- discursive representations are guided by the biomedical ideology. Verbs in the imperative mood indicate that governments hold the population accountable for disease control actions. The multimodality of the posters builds a positive idea of the disease, by highlighting images of "healthy" bodies in physical contact and colors that represent good vibes. They veil the reality of experiencing the disease by omitting important social aspects involving leprosy. To build a new image for such an old disease is not an easy challenge, especially when relationships are kept with common sense, permeated by stigmas. It is noted that the discourses on leprosy are related, even if indirectly, with the memories that address the stigma and, therefore, the setbacks linked to the formation of social identity and the full exercise of citizenship. The posters, by presenting images of "perfect bodies" and disjointed body parts with the manifestations of the disease, reinforce the stereotypes of the disease, in the same way that they bring insecurity, fear, anxiety, and doubts about it. Such socio-discursive representations accumulate socially and, in this way, perpetuate the mutilating, segregating, punitive, and dishonorable representation of the disease of the past.

Estigma da hanseníase por agentes comunitários de saúde: fatores associados / Stigma of leprosy by community health workers: associated factors

Objetivo: identificar os fatores associados ao estigma da hanseníase, manifestado na orientação quanto à separação de objetos no convívio familiar pelos agentes comunitários de saúde de Palmas, Tocantins, Brasil. Métodos: estudo transversal do tipo quantitativo realizado nas Unidades Básicas de Saúde de Palmas em uma população de 301 agentes comunitários de saúde, por meio de um questionário autoaplicável. Resultados: dos 301 agentes comunitários de saúde, 22,92% orientaram as pessoas no domicílio quanto à separação de objetos de uso pessoal, tais como talheres, copos, pratos, toalhas, roupa de cama, vestimentas e isolamento de dormitório. A orientação para separar objetos de uso pessoal foi significativamente maior para os agentes comunitários de saúde do sexo masculino (RP: 1,89; IC: 1,25-2,87), mais jovens (RP: 1,90; IC: 1,14-3,17), com menor tempo de moradia em Palmas (RP: 2,06; IC: 1,253,40), com localização da Unidade Básica de Saúde fora do plano diretor (RP: 1,75; IC: 1,11-2,76), que não fizeram curso em hanseníase (RP: 3,03; IC: 2,01-4,58), que nunca fizeram acompanhamento de casos (RP: 3,82; IC: 2,02-7,22) e que não teve um familiar acometido por hanseníase (RP: 1,96; IC: 1,10-3,47). Conclusão: a elevada prevalência de agentes comunitários de saúde que apresentam estigma da hanseníase representa uma barreira nas ações de controle da doença. Observou-se que as chances de ocorrência de estigma foram maiores nos agentes comunitários de saúde jovens, do sexo masculino, sem capacitação sobre hanseníase e com local de trabalho nas regiões periféricas do município. Fatores a serem considerados pelo programa de controle local com a adoção de Educação Permanente em Saúde. Investimentos em cursos direcionados à hanseníase podem contribuir para a redução do desconhecimento acerca da doença, pois os aspectos culturais e de crenças geracionais influenciam na manutenção de conceitos e do estigma social.

Objective: to identify the factors associated with the stigma of leprosy, manifested in guidance regarding the separation of objects in family life, by community health workers in Palmas, Tocantins, Brazil. Methods: quantitative cross-sectional study carried out in Basic Health Units in Palmas in a population of 301 community health workers, using a self-administered questionnaire. Results: of the 301 CHWs, 22.92% guided people at home regarding the separation of personal objects, such as cutlery, glasses, plates, towels, bed linen, clothing and bedroom isolation. Guidance to separate objects for personal use was significantly higher for male community health workers (PR: 1.89; CI:1.25-2.87), younger (PR:1.90; CI:1.14- 3.17), with less time living in Palmas (RP: 2.06; CI: 1.253.40), with the location of the Basic Health Units outside the master plan (PR: 1.75; CI: 1.11-2.76 ), who had not taken a leprosy course (PR:3.03; CI: 2.01-4.58), who had never followed up cases (PR:3.82; CI: 2.02-7.22) and who did not have a family member affected by leprosy (PR:1.96; CI: 1.10-3.47). Conclusion: the high prevalence of community health workers who have leprosy stigma represents a barrier in disease control actions. It was observed that the chances of stigma occurrence were higher in young, male community health agents, without training on leprosy and with a workplace in the peripheral regions of the city. Factors to be considered by the local control program with the adoption of Permanent Health Education. Investments in courses aimed at leprosy can contribute to reducing ignorance about the disease, as cultural aspects and generational beliefs influence the maintenance of concepts and social stigma.

Leprosy review.

Leprosy (Hansen's disease) can affect multiple organs and body structures. Skin signs are typically observed in the early phase of the disease, hence being the first identifiable signs to propel clinical suspicion. Leprosy predominantly affects the skin and peripheral nerves. The disease has been documented many centuries preceding the biblical era. Over many decades, the classification of Hansen's disease has changed as modern medical science evolved. Patients with leprosy are usually subjected to discrimination, rejection from society and can suffer from social stigma, poor quality of life (QoL), low self-esteem and permanent disfigurements. Studies have shown that leprosy has a significant negative impact on the patients' QoL. Leprosy is often not suspected by practicing clinicians because it is no longer emphasised in the medical curricula. In modern years, attention has gradually shifted from leprosy to tuberculosis (TB) and human immunodeficiency virus (HIV).