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.

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.

Stigma, depression and quality of life among people affected by neglected tropical diseases in Nepal.

BACKGROUND: Stigma and poor mental health are important factors influencing the quality of life (QOL) of people with neglected tropical diseases (NTDs). This study examines the relationship between stigma, depression and QOL among people affected by leprosy and lymphatic filariasis (LF) in Nepal. METHODS: A cross-sectional community-based survey was conducted among 102 NTD-affected persons (70 leprosy and 32 LF) using interview-administered questionnaires measuring the level of stigma (5-QSI-AP), symptoms of depression (PHQ-9) and QOL (WHOQOL-8). Three different regression models were developed, each using the ordinary least squares and Poisson regression to evaluate the association between stigma and QOL, depression and QOL, and stigma and depression. RESULTS: The mean scores were 21.8±4.4 for QOL, 6.6±5.6 for depression and 3.0±2.8 for stigma. Almost 17% reported the prevalence of depression symptoms. Both stigma (ß=-0.65, p<0.001) and depression (ß=-0.32, p<0.001) were associated with lower scores for QOL, while there was a significant positive relationship between stigma and depression (ß=0.92, p<0.001). Similar results were obtained from the Poisson regression models. CONCLUSIONS: The study showed a considerable burden of depression, stigma and poor QOL among study participants with leprosy and LF in Nepal. A holistic package of care that addresses the physical, mental and psychological well-being of people with NTD is required. CONTEXTE: La stigmatisation et la mauvaise santé mentale sont des facteurs importants qui influencent la qualité de vie des personnes atteintes de maladies tropicales négligées (MTN). Cette étude examine la relation entre la stigmatisation, la dépression et la qualité de vie chez les personnes atteintes de lèpre et de filariose lymphatique au Népal. MÉTHODES UTILISÉES: Une enquête communautaire transversale a été menée auprès de 102 personnes atteintes de MTN (70 de la lèpre et 32 de la filariose lymphatique) à l'aide de questionnaires administrés par entretien mesurant le niveau de stigmatisation (5-QSI-AP), les symptômes de dépression (PHQ-9) et la qualité de vie (WHOQOL-8). Trois modèles de régression différents ont été développés, chacun utilisant les moindres carrés ordinaires et la régression de Poisson pour évaluer l'association entre : (i) la stigmatisation et la QV; (ii) la dépression et la QV; et (iii) la stigmatisation et la dépression. RÉSULTATS: Les scores moyens étaient de 21,8±4,4 pour la QV, 6,6±5,6 pour la dépression, et 3,0±2,8 pour la stigmatisation. Près de 17% des personnes interrogées ont signalé la prévalence de symptômes dépressifs. La stigmatisation (ß = -0,65, p<0 001) et la dépression (ß = -0,32, p<0 001) ont été associées à des scores plus faibles pour la qualité de vie, tandis qu'il existait une relation positive significative entre la stigmatisation et la dépression (ß = 0,92, p<0 001). Des résultats similaires ont été obtenus à partir des modèles de régression de Poisson. CONCLUSIONS: L'étude a montré une incidence importante de dépression, de stigmatisation et d'une mauvaise qualité de vie parmi les participants atteints de lèpre et de FL au Népal. Il convient donc de mettre en place un ensemble de soins holistiques pour ces patients qui prendrait en compte le bien-être physique, mental et psychologique des personnes atteintes de MTN. ANTECEDENTES: La estigmatización y la mala salud mental son factores importantes que influyen en la calidad de vida de las personas con enfermedades tropicales desatendidas. las personas con enfermedades tropicales desatendidas (ETD). Este estudio examina la relación entre el estigma, la depresión y la CdV entre las personas afectadas por lepra y lepra y la filariasis linfática en Nepal. MÉTODOS: Se realizó una encuesta comunitaria transversal entre 102 personas afectadas por ETD (70 de lepra y 32 de filariasis linfática) utilizando cuestionarios entrevistas para medir el nivel de estigma (5-QSI-AP), los síntomas de depresión (PHQ- 9) y la CdV (OMS- 9). 9) y la calidad de vida (WHOQOL-8). Se desarrollaron tres modelos de regresión diferentes regresión de Poisson para evaluar la asociación entre: (i) el estigma y (ii) la depresión. entre: (i) estigma y CdV; (ii) depresión y CdV; y (iii) estigma y depresión. RESULTADOS: Las puntuaciones medias fueron 21,8±4,4 para la CdV, 6,6±5,6 para la depresión y 3,0±2,8 para el estigma. Casi el 17% informó de la prevalencia de síntomas de depresión. Tanto el estigma (ß = -0,65, p<0 001), como la depresión (ß = -0,32, p<0 001) se asociaron con puntuaciones más bajas para la CdV, mientras que hubo una relación positiva significativa entre el estigma y la depresión (ß = 0,92, p<0 001). Se obtuvieron resultados similares en los modelos de regresión de Poisson. CONCLUSIONES: El estudio mostró una carga considerable de depresión, estigma y mala CdV entre los participantes del estudio con lepra y FL en Nepal. Se requiere un paquete holístico de atención que aborde el bienestar físico, mental y psicológico de las personas con ETD.

Mental health, stigma and the quality of life of people affected by neglected tropical diseases of the skin in Kasai Province, Democratic Republic of the Congo: a sex-disaggregated analysis.

BACKGROUND: Worldwide, persons affected by skin Neglected Tropical Diseases (NTDs) may experience stigma and discrimination, which could lead to impaired societal functioning and poor mental wellbeing. Evidence of comorbidity of NTDs and mental health conditions is dominated by Leprosy, largely lacking in post-conflict areas, and rarely disaggregated by sex. METHODS: This cross-sectional survey is the first to explore depression, anxiety, stigma, and quality of life amongst people affected by Lymphatic Filariasis, Buruli Ulcer, Onchocerciasis or Leprosy in the Democratic Republic of the Congo. After a census through active case identification, the survey was completed by 118 persons (response rate 94.4%). RESULTS: In total, 58.3% of men and 80.0% of women screened positive for major depressive disorder (PHQ-9). Symptoms indicative of generalised anxiety disorder (GAD-7) were displayed by 54.8% of men and 62.2% of women. Being female, having a disability, experiencing stigma and lower physical quality of life were predictors of depression. Anxiety was predicted by age, physical quality of life, disability (for men only) and environmental quality of life (for women only). CONCLUSIONS: Integrated, intersectoral and gender-sensitive initiatives are needed to respond to the many biopsychosocial challenges that persons affected face. CONTEXTE: Dans le monde entier, les personnes atteintes de maladies tropicales négligées (MTN) peuvent faire l'objet d'une stigmatisation et d'une discrimination, ce qui peut entraîner une altération du fonctionnement de la société et un mauvais bien-être mental. Les preuves de la comorbidité des MTN et des troubles de la santé mentale sont dominées par la lèpre, manquent largement dans les zones post-conflit et sont rarement ventilées par sexe. MÉTHODES UTILISÉES: Cette enquête transversale est la première à explorer la dépression, l'anxiété, la stigmatisation et la qualité de vie chez les personnes atteintes de filariose lymphatique, d'ulcère de Buruli, d'onchocercose ou de lèpre en République démocratique du Congo. Après un recensement par identification active des cas, 118 personnes ont répondu à l'enquête (taux de réponse 94,4%). RÉSULTATS: Au total, 58,3% des hommes et 80,0% des femmes ont été dépistés positifs pour un trouble dépressif majeur (PHQ-9). Des symptômes indiquant un trouble anxieux généralisé (GAD-7) ont été observés chez 54,8 % des hommes et 62,2 % des femmes. Le fait d'être une femme, d'avoir un handicap, d'être stigmatisé et d'avoir une qualité de vie physique inférieure était un facteur prédictif de la dépression. L'anxiété était prédite par l'âge, la qualité de vie physique, le handicap (pour les hommes uniquement) et la qualité de vie environnementale (pour les femmes uniquement). CONCLUSIONS: Des initiatives intégrées, intersectorielles et sensibles au genre sont nécessaires pour répondre aux nombreux défis biopsychosociaux auxquels sont confrontées les personnes touchées. ANTECEDENTES: En todo el mundo, las personas afectadas por Enfermedades Tropicales Desatendidas (ETD) cutáneas pueden sufrir estigmatización y discriminación, lo que podría conducir a un deterioro del funcionamiento social y a un bienestar mental deficiente. La evidencia científica sobre la comorbilidad de las ETD y las afecciones mentales está dominada por la lepra, en general insuficiente en zonas post-conflicto y rara vez se desglosan por sexo. MÉTODOS: Esta encuesta transversal es la primera que explora la depresión, la ansiedad, el estigma y la calidad de vida entre las personas afectadas por la filariasis linfática, la úlcera de Buruli, la oncocercosis o la lepra en la República Democrática del Congo. Tras un censo mediante identificación activa de casos, la encuesta fue completada por 118 personas (tasa de respuesta del 94,4%). RESULTADOS: En total, el 58,3% de los hombres y el 80,0% de las mujeres arrojaron resultados positivos para el trastorno depresivo mayor (PHQ-9). El 54,8% de los hombres y el 62,2% de las mujeres presentaban síntomas indicativos de trastorno de ansiedad generalizada (TAG-7). Ser mujer, tener una discapacidad, sufrir estigmatización y una menor calidad de vida física fueron factores predictivos de la depresión. La edad, la calidad de vida física, la discapacidad (sólo en el caso de los hombres) y la calidad de vida ambiental (sólo en el caso de las mujeres) fueron factores predictivos de la ansiedad. CONCLUSIONES: Se necesitan iniciativas integradas, intersectoriales y con perspectiva de género para responder a los numerosos retos biopsicosociales a los que se enfrentan las personas afectadas.

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

BACKGROUND: People with leprosy and lymphatic filariasis (LF)-related disabilities experience higher levels of poor mental well-being compared with the general community. Mental health services are often not available. This study was conducted to provide proof of concept that basic psychological support for people affected by neglected tropical diseases (BPS-N) can be given by peer supporters to reduce stigma, improve mental well-being and participation among clients. METHODS: The BPS-N approach was tested in a quasi-experimental design using mixed methods. To provide psychological support using the BPS-N, peer supporters were selected and trained. They supported people with leprosy- and LF-related disabilities. Preintervention and postintervention, stigma, mental well-being, depression and participation were measured through standard scales within 4 wk of the intervention; differences were tested using standard tests of significance. RESULTS: After 3 mo of intervention, the mean level of stigma had decreased (30.3 to 24, p<0.001); high mental well-being increased (0% to 13.3%, p<0.001); and moderate to severe depression decreased (88% to 47%, p<0.001). No significant change occurred in participation restrictions (87% to 92%, p=0.497). CONCLUSIONS: Psychological peer support using the BPS-N guideline appears effective in reducing stigma and improving mental well-being and can be operationalised. However, this should be confirmed through a randomised controlled trial. CONTEXTE: Les personnes atteintes de lèpre et de handicaps liés à la filariose lymphatique (FL) souffrent davantage d'un manque de bien-être mental que le reste de la population. Les services de santé mentale ne sont souvent pas disponibles hors des zones urbaines. Cette étude a été menée pour démontrer que le soutien psychologique de base pour les personnes atteintes de MTN (BPS-N) peut être dispensé par des pairs (dans une logique de transfert de tâches) afin de réduire la stigmatisation et d'améliorer le bien-être mental et la participation des clients. MÉTHODES: L'approche du BPS-N a été testée dans le cadre d'un modèle quasi-expérimental utilisant des méthodes mixtes. Pour fournir un soutien psychologique à l'aide du BPS-N, des pairs ont été sélectionnés et formés. Ils sont venus en aide aux personnes atteintes de lèpre et de déficiences liées à la FL. Avant et après l'intervention, les éléments suivants ont été mesurés à l'aide d'échelles standardisées: niveau de stigmatisation, bien-être mental, symptômes dépressifs, et enfin, la participation sociale. Les différences ont été testées à l'aide de tests de signification standardisés. RÉSULTATS: Après 3 mois d'intervention, le niveau moyen de stigmatisation a diminué (30,3 à 24, p<0 001) ; le niveau de bien-être mental a augmenté (0% à 13,3%, p<0 001) et la dépression modérée à sévère a diminué (88% à 47%, p<0 001). Aucun changement significatif n'a été observé en ce qui concerne les restrictions de participation (87% contre 92%, p=0 497). CONCLUSIONS: Le soutien psychologique par les pairs utilisant la ligne directrice BPS-N semble efficace pour réduire la stigmatisation et améliorer le bien-être mental. Toutefois, cette efficacité doit être confirmée par un essai contrôlé randomisé. ANTECEDENTES: Las personas con lepra y discapacidades relacionadas con la filariasis linfática (FL) sufren niveles más altos de malestar mental en comparación con la comunidad en general. Los servicios de salud mental no suelen estar disponibles a nivel periférico. Este estudio se llevó a cabo para proporcionar una prueba de concepto de que el Apoyo Psicológico Básico para personas afectadas por NTDs (BPS-N) puede ser dado por compañeros de apoyo (rotación de tareas) para reducir el estigma, mejorar el bienestar mental y la participación entre los clientes. MÉTODOS: El enfoque BPS-N se probó en un diseño cuasi-experimental utilizando métodos mixtos. Para proporcionar apoyo psicológico con el BPS-N, se seleccionaron y formaron compañeros de apoyo. Apoyaron a personas con lepra y discapacidades relacionadas con la FL. El estigma, el bienestar mental, la depresión y la participación se midieron antes y después de la intervención, mediante escalas estándar; las diferencias se comprobaron mediante pruebas estándar de significación. RESULTADOS: Después de 3 meses de intervención, el nivel medio de estigma disminuyó (30,3 a 24, p<0 001); el bienestar mental alto aumentó (0% a 13,3%, p<0 001) y la depresión moderada a grave disminuyó (88% a 47%, p<0 001). No se produjeron cambios significativos en las restricciones de participación (87% frente a 92%, p=0 497)). CONCLUSIONES: El apoyo psicológico entre iguales, utilizando la guía BPS-N, parece eficaz para reducir el estigma y mejorar el bienestar mental. Sin embargo, esto debe confirmarse mediante un ensayo controlado aleatorizado.

Hanseniase: é preciso vencer o preconceito | Saúde+ Cast

Antigamente, toda doença dermatológica era conhecida como lepra. Uma delas, e talvez a mais agressiva, seja a hanseníase. Atualmente, o Brasil é o segundo país com mais casos de hanseníase no mundo. A boda notícia é que essa doença tem cura, e quanto mais precoce foir o diagnóstico e o tratamento, melhor. Ouça o bate-papo do Saúde+ Cast com Livia de Andrade Bessa, médica Dermatologista do Programa Municipal de Controle da Hanseníase da COVISA.

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.

How do Americans perceive the stigma of leprosy?

The stigma of leprosy will have reduced effects if people cannot reliably perceive it. Two factors impact these perceptions: familiarity and entitativity. One hundred and forty-five participants tested this assertion using an online platform to complete measures of stigma about leprosy as well as measures of familiarity and entitativity. The group of 145 completed the same measures of stigma, entitativity, and familiarity 1 week later. Standard deviations of time 1 and time 2 measures of stigma were used as indices of consistent (reliable) perceptions at the individual level. Results showed partial support for familiarity being positively associated with reliable responding. Moreover, high entitativity scores were associated with greater stigma perceptions at time 1 and time 2. Ongoing research on these indicators may be important in crafting future anti-stigma programs for leprosy.

Conferências de saúde e a hanseníase: ditos e silenciamentos sobre a doença negligenciada e seus estigmas / Health and leprosy conferences: sayings and silences about the neglected disease and its stigmas

Resumo Vista como um sério problema de saúde pública em diferentes localidades, a hanseníase é marcada por tabus e carregada de estigmas. É uma doença negligenciada e constituída por diversas explicações ao longo da história, que atualizam marcas vivas do passado, inclusive na implementação de políticas públicas. As conferências de saúde são espaços de participação da sociedade na definição de políticas, com o objetivo de impactar o plano de cuidado de diferentes enfermidades. O objetivo deste artigo é compreender a relevância e as perspectivas apontadas às políticas públicas para a atenção às pessoas acometidas por hanseníase presentes nas etapas municipal, estadual e nacional da 16ª Conferência Nacional de Saúde. Trata-se de uma pesquisa documental baseada nos relatórios finais e na esteira do processo ascendente da 16ª Conferência Nacional de Saúde. Os resultados demonstram a falta de visibilidade da hanseníase nos relatórios das etapas municipal e estadual da conferência e, na etapa nacional, o registro tem dupla ênfase, produzir visibilidade sobre a doença e seu contexto, reivindicando atualizar a mobilização social em torno dela e ações de educação permanente voltadas aos trabalhadores.

Abstract Seen as a serious public health problem in different locations, leprosy is marked by taboos and carried by stigma. It is a neglected disease and made up of several explanations throughout history, which update living marks of the past, including in the implementation of public policies. Health conferences are spaces for society to participate in the definition of policies, aiming to impact the care plan of different illnesses. The objective of this article is to understand the relevance and perspectives pointed to public policies for the care of people affected by leprosy present in the municipal, state, and national stages of the 16th National Health Conference. This is a documentary research based on the final reports and in the wake of the ascending process of the 16th National Health Conference. The results show the lack of visibility of leprosy in the reports of the municipal and state stages of the conference and, in the national stage, the record has a double emphasis: producing visibility about the disease and its context, claiming to update social mobilization around it and permanent education actions aimed at workers.

Culture circle with community health workers about (lack of) knowledge and stigma of leprosy / Círculo de cultura con agentes comunitarios de salud sobre (des)conocimiento y estigma de lepra / Círculo de cultura com agentes comunitários de saúde sobre (des)conhecimentos e estigma da hanseníase

ABSTRACT 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.

RESUMEN Objetivo: Describir la construcción sobre (des)conocimiento y estigma de la lepra por parte de los Agentes Comunitarios de Salud participantes del Círculo de Cultura. Método: Estudio cualitativo, de tipo investigación-acción, apoyado en el marco del Círculo de Cultura Paulo Freire, realizado con 21 Agentes Comunitarios de Salud. Datos recolectados en noviembre de 2021, en el municipio de São Luís, Maranhão. Se evidenciaron las categorías conocimientos sobre la lepra; signos y síntomas; estigma. Resultados: Los participantes tenían conocimiento sobre la enfermedad, pero verbalizaban la desinformación de las personas sobre la lepra, la incredulidad con relación a la cura y situaciones de prejuicio y estigma que aún hoy están presentes. Consideraciones finales: El círculo de cultura posibilitó entrelazar saberes científicos y empíricos en la construcción de un saber crítico y reflexivo comprometido con la acogida y atención integral de las personas y familias afectadas por la lepra.

RESUMO Objetivo: Descrever a construção sobre o (des)conhecimento e estigma da hanseníase pelos Agentes Comunitários de Saúde participantes do Círculo de Cultura. Método: Estudo qualitativo de tipo pesquisa-ação apoiado pelo referencial do Círculo de Cultura de Paulo Freire, realizado com 21 Agentes Comunitários de Saúde. Dados coletados em novembro de 2021, no município de São Luís, Maranhão. Foram evidenciadas as categorias conhecimento sobre a hanseníase; sinais e sintomas; estigma. Resultados: Os participantes possuíam conhecimento sobre a doença, mas verbalizaram a existência de desinformação das pessoas sobre a hanseníase, descrenças em relação à cura, além de situações de preconceito e estigma ainda presentes atualmente. Considerações finais: O círculo de cultura possibilitou o entrelace dos saberes científicos e empíricos na construção de um conhecimento crítico e reflexivo comprometido com o acolhimento e atenção integral às pessoas e famílias afetadas pela hanseníase.

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.

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.

The Impact of Leprosy on the Quality of Life of Patients Undergoing Treatment / O Impacto da Hanseníase na Qualidade de Vida dos Pacientes em Fase de Tratamento

The individuals with Hansen's disease experience situations of prejudice that, together with stigma and discrimination, culminate in social isolation and restrictions in social relationships. The aim of this study was to assess the perception of leprosy patients about their quality of life. This is a cross-sectional, quantitative study, whose convenience sample consisted of 94 leprosy patients, undergoing treatment, who attended health units in the city of Cuiabá, MT, Brazil. A structured questionnaire with sociodemographic data and information about the patient's knowledge about leprosy, prejudice, self-esteem and quality of life, was applied between April and August 2018.The results showed in the investigated population a predominance of males (55.3%), individuals with high school education (28.7%) and with an income ranging from 1 to 3 minimum wages (67%).The interviewees pointed out the side effects (44.7%) and the duration period (28.7%) as the greatest difficulty in the treatment. Most of the investigated (72.3%) had great knowledge about the disease, among which 26.6% had already suffered the leprosy reaction.40.4% of individuals were depressed and sad, and 69.1% had problems in employment after the diagnosis of the disease. When the quality of life was investigated, 45.7% of leprosy patients classified the domains evaluated between bad and very bad. Physical pain was associated with 43.7% of the individuals being unable to perform daily tasks. It can be concluded that leprosy causes suffering beyond pain and discomfort, with great social and psychological impact. (AU)

Os pacientes com hanseníase vivenciam situações de preconceito que, com o estigma e a discriminação, culminam para o isolamento social e a restrição dos relacionamentos sociais. O objetivo do presente estudo foi avaliar a percepção do paciente com hanseníase sobre sua qualidade de vida. Trata-se de um estudo transversal, quantitativo, cuja amostra de conveniência foi composta por 94 pacientes hansenianos, em fase de tratamento, que frequentavam as Unidades de Saúde do município de Cuiabá/MT, Brasil. Um questionário estruturado com dados sociodemográficos e informações sobre o conhecimento do paciente sobre a hanseníase, preconceito, autoestima e qualidade de vida, foi aplicado entre abril e agosto de 2018. Os resultados mostraram, na população investigada, um predomínio de indivíduos do sexo masculino (55,3%), com ensino médio completo (28,7%) e com renda entre 1 e 3 salários mínimos (67%). Os entrevistados apontaram como maior dificuldade do tratamento os efeitos colaterais (44,7%) e o período de duração (28,7%). A maioria dos investigados (72,3%) apresentava grande conhecimento sobre a doença, dentre os quais 26,6% já haviam sofrido a reação hansênica. 40,4% dos indivíduos encontravam-se deprimidos e tristes e 69,1%, tiveram problemas no emprego após o diagnóstico da doença. Quando a qualidade de vida foi investigada, 45,7% dos hansenianos classificaram os domínios avaliados entre ruim e muito ruim. A dor física foi associada ao impedimento do desempenho das tarefas diárias por 43,7% dos indivíduos. Pode-se concluir que a hanseníase causa sofrimento aos indivíduos que ultrapassa a dor e o mal-estar estritamente vinculados ao prejuízo físico, com grande impacto social e psicológico. (AU)

A resilience building collaboration: A social identity empowerment approach to trauma management in leprosy-affected communities.

OBJECTIVES: Communities affected by leprosy encounter multiple traumas and adversities and are some of the poorest in the world. A diagnosis of leprosy can have catastrophic implications for peoples social, health, and economic circumstances. In this article, we describe a reciprocal collaboration with a nongovernmental organization (NGO) that supports people affected by leprosy, trauma, and adversity in rural Nepal. We offer a social identity-based empowerment approach for two reasons. We argue this approach is particularly suited to support those impacted by trauma and its psychological aftermath as those affected are disproportionately from disempowered and marginalized groups. Second, we know that people gain strength from others with whom they share experiences. METHOD: We offer longitudinal data (N = 71) to support this model of a mutually respectful, participatory, and collaborative approach with the Nepal Leprosy Trust (NLT), a social development NGO. RESULTS: Findings of mediation analysis highlight that where a traumatic experience is highly stigmatized and isolating there is value in a group-based, self-help approach that emphasizes empowerment. CONCLUSION: A group-based approach that focuses on increasing knowledge and collective social resources is empowering for those affected by leprosy and adversity, because these resources build resilience. (PsycInfo Database Record (c) 2022 APA, all rights reserved).