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.

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.

Mal de Meleda: A great imitator.

Mal de Meleda is an hereditary palmoplantar keratoderma named for the Mljet Island in Croatia. The lives of those affected by this disease represent a complex situation that encompasses members of a vulnerable group. They require enlightenment and should be approached with awareness, taking into account their overall psychophysical status and the environment of each patient. Those afflicted with Mal de Meleda not only have to deal with a difficult life due to their affliction, but they also must cope with the hardships of socialization while trying to realize a normal life within their island community. This is compounded by the frequent interviews and examinations of researchers interested in the various aspects of their illness. The subject of this contribution is not about the nature of this disease, rather about the traces it has left on the (sub)consciousness of the population. It is also concerned with exploring ways of how to access patients and understanding the depth of their vulnerability. We present some thoughts tied to the interpersonal experiences of researchers and patients afflicted with Mal de Meleda.

Strategies to reduce stigma related to visible chronic skin diseases: a systematic review.

Many patients with a visible chronic skin disease experience discrimination and stigmatization. This results in psychosocial impairments in addition to the burden of disease and emphasizes the urgency to implement effective stigma-reduction strategies. To synthesize what is known globally about effective interventions to reduce stigma associated with visible chronic skin diseases, a systematic review was conducted. Four electronic databases were searched until May 2018. Studies evaluating interventions to reduce stigmatization in patients with visible chronic skin diseases and applying at least one stigma-related outcome measure were included. Data were extracted on study design, country, study population, outcome measures and main findings. Results were subsequently synthesized in a narrative review. Critical Appraisal Skills Programme tools were used to assess study quality. Nineteen studies were included in the review. Study design was very heterogeneous and study quality rather poor. Thirteen studies addresses patients with leprosy in low- and middle-income countries, and one study each targeted patients with onychomycosis, leg ulcer, facial disfigurement, atopic dermatitis, vitiligo and alopecia. Evaluated interventions were mainly multi-faceted incorporating more than one type of intervention. While 10 studies focused on the reduction in self-stigma and 4 on the reduction in public stigma, another 5 studies aimed at reducing both. The present review revealed a lack of high-quality studies on effective approaches to reduce stigmatization of patients with visible chronic skin diseases. Development and evaluation of intervention formats to adequately address stigma is essential to promote patients' health and well-being.

Stigmatizing attitudes of primary care professionals towards people with mental disorders: A systematic review.

Objective To examine stigmatizing attitudes towards people with mental disorders among primary care professionals and to identify potential factors related to stigmatizing attitudes through a systematic review. Methods A systematic literature search was conducted in Medline, Lilacs, IBECS, Index Psicologia, CUMED, MedCarib, Sec. Est. Saúde SP, WHOLIS, Hanseníase, LIS-Localizador de Informação em Saúde, PAHO, CVSO-Regional, and Latindex, through the Virtual Health Library portal ( http://www.bireme.br website) through to June 2017. The articles included in the review were summarized through a narrative synthesis. Results After applying eligibility criteria, 11 articles, out of 19.109 references identified, were included in the review. Primary care physicians do present stigmatizing attitudes towards patients with mental disorders and show more negative attitudes towards patients with schizophrenia than towards those with depression. Older and more experience doctors have more stigmatizing attitudes towards people with mental illness compared with younger and less-experienced doctors. Health-care providers who endorse more stigmatizing attitudes towards mental illness were likely to be more pessimistic about the patient's adherence to treatment. Conclusions Stigmatizing attitudes towards people with mental disorders are common among physicians in primary care settings, particularly among older and more experienced doctors. Stigmatizing attitudes can act as an important barrier for patients to receive the treatment they need. The primary care physicians feel they need better preparation, training, and information to deal with and to treat mental illness, such as a user friendly and pragmatic classification system that addresses the high prevalence of mental disorders in primary care and community settings.

A cross-sectional study to assess the stigma associated with tuberculosis among tuberculosis patients in Udupi district, Karnataka.

BACKGROUND: For decades, tuberculosis and other communicable diseases like human immunodeficiency virus/acquired immune deficiency syndrome, leprosy, etc., have been associated with stigma and discrimination by the society; this can interfere with the lifestyle and disease management among these patients. OBJECTIVE: To assess the stigma experienced by tuberculosis patients and to find the factors associated with stigma. METHODS: A cross-sectional study was conducted among 209 sputum-positive and sputum-negative tuberculosis patients. Convenient sampling was used to identify the patients. A predesigned, pretested proforma from Explanatory Model Interview Catalogue developed by World Health Organization was used for data collection. RESULTS: The study revealed that out of 209 respondents, 51.2% of the respondents experienced some form of stigma. Majority of the patients have received only primary education and 71.3% of the respondents were males. Most of the patients were under category 1 of Directly Observed Treatment Short course. Age, education, and smear status of the patient were found to be associated with stigmatization (P<0.05), whereas factors like gender, income, occupation, family history, and marital status were found to be not significantly associated with stigmatization. CONCLUSION: Effective counseling measures are recommended for tuberculosis patients with advancing age and education which can help reduce stigmatization and thereby improve quality of life.

Leprosy: Social implications from antiquity to the present.

One of the most important dermatologic diseases from the sociologic viewpoint has been leprosy. Those with leprosy were isolated, excluded from society, and stigmatized. Such a stigma indicates the strong feeling that a leprosy patient is shameful and should not be accepted by society. During the first millennium, leprosy was rapidly inscribed in the system of religious prohibitions-the disease was a punishment by God for wrongdoing, and the disease was associated with the lower spheres of the society. Social perception of leprosy gradually changed during the time of Crusades. The care for lepers became a Christian obligation, and celebrating Holy Masses as for the dead was forsaken. The sick were forced to stay at leprosaria, particularly from the 14th through the 19th centuries when fear of leprosy was at a high point. Admission to a leprosarium was mandatory not only for patients with leprosy but also even those suspected of having the disease.

Leprosy: social implications from antiquity to the present

One of the most important dermatologic diseases from the sociologic viewpoint has been leprosy. Those with leprosy were isolated, excluded from society, and stigmatized. Such a stigma indicates the strong feeling that a leprosy patient is shameful and should not be accepted by society. During the first millennium, leprosy was rapidly inscribed in the system of religious prohibitions­the disease was a punishment by God for wrongdoing, and the disease was associated with the lower spheres of the society. Social perception of leprosy gradually changed during the time of Crusades. The care for lepers became a Christian obligation, and celebrating Holy Masses as for the dead was forsaken. The sick were forced to stay at leprosaria, particularly from the 14th through the 19th centuries when fear of leprosy was at a high point. Admission to a leprosarium was mandatory not only for patients with leprosy but also even those suspected of having the disease.

La lepra en Colombia: estigma, identidad y resistencia en los siglos XX y XXI / Leprosy in Colombia: stigma, identity and resistance in XX and XXI centuries

Este artículo analiza la historia de la lepra o enfermedad de Hansen como un concepto reelaborado a lo largo de la historia por los discursos científicos, políticos, religiosos y por los saberes populares, puesto en relación al problema de la estigmatización. Buscamos realizar un análisis desde la teoría del estigma como un proceso social, que produce el aislamiento, la exclusión, discriminación y rechazo al enfermo y su familia, deteriorando la identidad de los mismos. Encontramos y analizamos cómo se produce en la interacción social la estigmatización, y a su vez, cómo los enfermos reelaboran su identidad, generando una serie de estrategias de afrontamiento y ocultamiento del estigma, estrategias de resistencia con las que reconstruyen su tejido social. Las categorías de análisis de la información fueron percepciones y creencias sobre la enfermedad, relaciones sociales y familiares, construcción de la imagen del enfermo y las metáforas de la enfermedad, actos de discriminación y rechazo, y actos de ocultamiento y afrontamiento del estigma. En este trabajo de carácter cualitativo, analítico y diacrónico, se utilizaron metodologías de investigación cualitativa, consistentes en entrevistas, observación etnográfica, trabajos de memoria y cartografía social, y revisión y análisis de fuentes primarias y secundarias, recolectando información de Colombia, específicamente los municipios de Agua de Dios, Cundinamarca y Contratación, Santander, considerando como marco temporal los siglos XX y XXI.

This article analyzes the history of leprosy or hansens disease as a concept that has been re elaborated throughout history by popular opinion and political, religious and scientific influence, all in relation with the problem of stigmatizing. Here we seek to make an analysis of the theory of stigma as social process that produces isolation, exclusion, discrimination and rejection of the sick and his family, reducing their own identity. We find and analyze how social interaction in stigmatization works, and how those with the disease recreate their identity, generating a series of coping strategies, ways of hiding the cause of stigma, and resilience strategy with which they rebuild their social network. The information was analyzed through the categories of perceptions and believes of the disease, social and family relations, self image construction of the sick and the metaphors of the disease, acts of discrimination and rejection, acts of hiding and confronting the stigma. In this work of analytic, qualitative and diachronic characteristics, we used qualitative investigation methodologies, consisting in interviews, ethnographic observation, social cartography and memory exercises, and reviews and analysis of primary and secondary sources. Information was collected from Colombia, specifically the towns of Agua de Dios, Cundinamarca and Contratacion, Santander, taking into account the XX and XXI century as the time frame.

A imagem corporal nas ações educativas em autocuidado para pessoas que tiveram hanseníase / Body image in educational actions in self-care for people who had leprosy

Os comprometimentos físicos ocasionados pela hanseníase são pactuados nas ações do Plano Nacional de Controle da Hanseníase e são considerados um grave problema de saúde pública. Como forma de prevenir o avanço de incapacidades, o Ministério da Saúde propõe ações educativas em autocuidado. No entanto, apesar da enfática importância da realização do autocuidado, observa-se a não aderência dos pacientes ao programa, que pode ser justificada, dentre outros motivos, pela desestruturação de sua imagem corporal e pelo estigma advindo das representações sociais do corpo "leproso". Sendo assim, acredita-se na importância de ampliar o discurso tecnicista nas ações educativas em autocuidado, considerando a imagem corporal como aspecto importante nas estratégias de tratamento da doença. Objetiva-se conhecer a imagem corporal de pessoas que tiveram hanseníase e que desenvolveram incapacidades físicas. Para tanto, aplicou-se o teste psicológico Desenho da Figura Humana (DFH), com ênfase na análise interpretativa das mãos e dos pés, locais mais afetados pela hanseníase, em cinco mulheres cadastradas e em acompanhamento no Programa de Autocuidado em Hanseníase de um Ambulatório Regional de Especialidades de um município do Vale do Paraíba Paulista. O teste foi realizado no período de março a dezembro de 2009. Os resultados revelaram a não inclusão ou a desfiguração de mãos e pés. Existe uma falta de integração dessas regiões à consciência, acarretando desestruturação da imagem corporal, que pode decorrer tanto da perda de sensibilidade cutânea como da deformidade advindas da doença. Infere-se que essa desestruturação da imagem corporal dificulta a aderência ao autocuidado e a sociabilização dessas pessoas, aumentando o estigma da hanseníase...

Physical impairment caused by leprosy are agreed in the National Plan for Leprosy Control and are considered a serious public health problem. In order to prevent the advance of disabilities, the Ministry of Health proposes educational actions in self-care. However, despite the emphatic importance of performing self-care, we observe non-adherence of patients to the program, which may be explained, among other reasons, by the destruction of their body image and the stigma arising from the social representations of the "leprous" body. Thus, we believe in the importance of increasing the technicist discourse in educational actions in self-care, considering body image as an important aspect in the treatment strategies of the disease. We aim to meet the body image of people who had leprosy and developed disabilities. For this, we applied the psychological test Human Figure Drawing (HFD), with emphasis on interpretive bnalysis of the hands and feet, the most affected by leprosy, in five women registered and monitored by the Self-Care Program in Leprosy, in a Regional Outpatient Clinic in the district of Vale do Paraíba Paulista. The test was conducted from March to December 2009. Results revealed the inclusion or disfigurement of hands and feet. There is a lack of integration between these regions and awareness, causing disruption of body image, which may result from both loss of cutaneous sensibility and the resulting deformity disease. It is inferred that this disruption of body image hinders adherence to self-care and socialization of these people, increasing the stigma of leprosy...

Gender-based attitudes, HIV misconceptions and feelings towards marginalized groups are associated with stigmatization in Mumbai, India.

Summary This study examined the association of gender-based attitudes, HIV misconceptions and community feelings for marginalized groups with stigmatizing responses towards people with HIV/AIDS in Mumbai, India. Participants included 546 men and women sampled in hospital settings during 2007-2008. Structured measures were used to assess avoidance intentions and denial of rights of people with HIV/AIDS. Mean age of participants was 32 years; 42% had less than 10 years of education. Higher HIV transmission misconceptions (ß=0.47; p<0.001), more traditional gender attitudes (ß=0.11; p<0.01) and more negative feelings towards HIV-positive people (ß=0.23; p<0.001) were related to higher avoidance intentions. Endorsement of denial of rights was also significantly associated with higher transmission misconceptions (ß=0.20; p<0.001), more traditional gender attitudes (ß=0.33; p<0.001) and greater negative feelings towards HIV-positive people (ß=0.12; p<0.05), as well as with a lower education level (ß=-0.10; p<0.05). The feelings respondents had towards people with HIV/AIDS were more strongly correlated with their feelings towards those with other diseases (tuberculosis, leprosy) than with feelings they had towards those associated with 'immoral' behaviour (e.g. sex workers). Eliminating HIV transmission misconceptions and addressing traditional gender attitudes are critical for reducing HIV stigma in Indian society.

Internalized Stigma of Mental Illness (ISMI) scale: a multinational review.

The Internalized Stigma of Mental Illness (ISMI) scale is a 29-item questionnaire measuring self-stigma among persons with psychiatric disorders. It was developed with substantial consumer input and has been widely used, but its psychometric qualities have not been comprehensively evaluated across multiple versions. Here we review the 55 known versions, and provide the 47 available versions, including: Arabic, Armenian, Bengali, Bulgarian, Chinese (Mainland, Taiwan, Hong Kong), Croatian, Dutch, English (USA, South Africa), Estonian, Farsi, Finnish, French, German, Greek, Hebrew, Hindi, Japanese, Khmer, Korean, Lithuanian, Lugandan, Maltese, Polish, Portuguese (Portugal, Brazil), Romanian, Russian, Samoan, Slovenian, Spanish (Spain), Swahili, Swedish, Tongan, Turkish, Urdu, and Yoruba, and qualitative English and Swahili versions, as well as versions for depression, schizophrenia, substance abuse, eating disorders, epilepsy, inflammatory bowel disease, leprosy, smoking, parents and caregivers of people with mental illness, and ethnicity. The various versions show reliability and validity across a wide range of languages, cultures, and writing systems. The most commonly reported findings of studies using the ISMI are that internalized stigma correlates with higher depression, lower self esteem, and higher symptom severity. Initial studies of ways to reduce internalized stigma are promising and warrant further investigation.

Development of a scale to measure stigma related to podoconiosis in Southern Ethiopia.

BACKGROUND: Health-related stigma adds to the physical and economic burdens experienced by people suffering from neglected tropical diseases (NTDs). Previous research into the NTD podoconiosis showed significant stigma towards those with the disease, yet no formal instrument exists by which to assess stigma or interventions to reduce stigma. We aimed to develop, pilot and validate scales to measure the extent of stigma towards podoconiosis among patients and in podoconiosis-endemic communities. METHODS: Indicators of stigma were drawn from existing qualitative podoconiosis research and a literature review on measuring leprosy stigma. These were then formulated into items for questioning and evaluated through a Delphi process in which irrelevant items were discounted. The final items formed four scales measuring two distinct forms of stigma (felt stigma and enacted stigma) for those with podoconiosis and those without the disease. The scales were formatted as two questionnaires, one for podoconiosis patients and one for unaffected community members. 150 podoconiosis patients and 500 unaffected community members from Wolaita zone, Southern Ethiopia were selected through multistage random sampling to complete the questionnaires which were interview-administered. The scales were evaluated through reliability assessment, content and construct validity analysis of the items, factor analysis and internal consistency analysis. RESULTS: All scales had Cronbach's alpha over 0.7, indicating good consistency. The content and construct validity of the scales were satisfactory with modest correlation between items. There was significant correlation between the felt and enacted stigma scales among patients (Spearman's r = 0.892; p < 0.001) and within the community (Spearman's r = 0.794; p < 0.001). CONCLUSION: We report the development and testing of the first standardised measures of podoconiosis stigma. Although further research is needed to validate the scales in other contexts, we anticipate they will be useful in situational analysis and in designing, monitoring and evaluating interventions. The scales will enable an evidence-based approach to mitigating stigma which will enable implementation of more effective disease control and help break the cycle of poverty and NTDs.

Disease-avoidance processes and stigmatization: cues of substandard health arouse heightened discomfort with physical contact.

An evolutionary approach to stigmatization suggests that disease-avoidance processes contribute to some instances of social exclusion. Disease-avoidance processes are over-inclusive, targeting even non-threatening individuals who display cues of substandard health. We investigated whether such cues motivate avoidance of physical contact in particular. In Studies 1 and 2, targets with disease (e.g., leprosy) or atypical morphologies (e.g., amputated leg, obesity) were found to arouse differentially heightened discomfort with physical (versus nonphysical) contact, whereas a criminal target (stigmatized for disease-irrelevant reasons) was found to arouse elevated discomfort for both types of contact. Study 3 used a between-subjects design that eliminated the influence of extraneous factors. A diseased target was found to arouse differentially heightened discomfort with physical (versus nonphysical) contact, and to do so more strongly than any other type of target.

An exploration of health, family and economic experiences of leprosy patients, Iran.

This study aims to explore the life experiences of Iranian leprosy patients in health, family and economic dimensions. Mycobacterium leprae is responsible for leprosy, a type of chronic inflammatory disease that existed from ancient times, still hearing the name of leprosy creates an awful imagination of cutting the organ, blindness and isolation and it has still remained as a serious social problem. The patients are confronted with particular problems physically and mentally. The phenomenological tradition was used to gain knowledge of the leprosy patients lived experiences. Data analysis method was based on Colaizzi's approach. This is a qualitative research using purposeful sampling, interviewing the leprosy patients referring to a contagious diseases department of the Health Network of Nourabad Lorestan City. Data were collected by interviews those were analyzed in Colaizzi's Methods to extract the conceptual codes. Some concepts obtained from the analysis of data in the study such as physical, psychological, social, family, economic experiences, cultural beliefs of society, the context for tendency toward defect and disability and social stigma. These findings suggest that health care professionals should pay attention not only to leprosy patients to reduce their physical and psychological but also to the community and public culture to reduce the leprosy patients suffering from social stigma. The results of the present study can help us in a better understanding of all aspects of patients' lived experiences.

Using a clinic based creativity initiative to reduce HIV related stigma at the Infectious Diseases Institute, Mulago National Referral Hospital, Uganda.

BACKGROUND: Stigma has been associated with chronic health conditions such as HIV/AIDS, leprosy, tuberculosis, Mental illness and Epilepsy. Different forms of stigma have been identified: enacted stigma, perceived stigma, and self stigma. Stigma is increasingly regarded as a key driver of the HIV/AIDS epidemic and has a major impact on public health interventions. OBJECTIVES: The initiative was to provide activities in the clinic while patients waited to be seen by healthcare professionals. It was envisaged this would contribute to reduction of clinic based stigma felt by clients. METHODS: This was a repeated cross-sectional survey (October-November 2005 and March-April 2007) that was conducted at the Infectious Diseases Institute clinic (IDC) at Mulago, the national referral hospital in Uganda. We utilized quantitative (survey) and qualitative (key informants, focus group discussions) methods to collect the data. Data were collected on stigma before the creativity initiative intervention was implemented, and a second phase survey was conducted to assess effectiveness of the interventions. RESULTS: Clients who attended the IDC before the creativity intervention were about twice as likely to fear catching an infection as those who came after the intervention. The proportion that had fears to be seen by a friend or relative at the clinic decreased. Thus during the implementation of the Creativity intervention, HIV related stigma was reduced in this clinic setting. CONCLUSIONS: The creativity intervention helped to build self esteem and improved communication among those attending the clinic; there was observed ambiance at the clinic and clients became empowered, with creative, communication and networking skills. Improved knowledge and communication are key in addressing self stigma among HIV positive individuals.

Stakeholders perspectives on perceived needs and priorities for leprosy control and care, Tamil Nadu, India.

Although leprosy has been declared as eliminated in India, treated patients with persisting disabilities still require care. With the shift from vertical to integrated services, questions remain about case detection and maintaining the quality of patient care. We conducted a qualitative study to clarify the perceived status of elimination, patient care and other aspects of leprosy control from the perspective of various stakeholders. We interviewed leprosy programme managers, Non-governmental organization directors, healthcare providers, patients and community leaders from Kanchipuram district, Tamil Nadu. Consensus endorsed the current approach to integration of leprosy in primary healthcare, but healthcare personnel acknowledged problems from shortage of medicines and failure to fill key positions. Patients were concerned about limited clinic hours, long waits and delayed treatment. Disabled patients indicated how they were troubled by stigmatization of their condition. Programme managers mentioned limited support for needed research and some emphasized the potential threat of emerging drug resistance. Although consensus supports an integrated approach for leprosy services in primary care, the relative priority of different aspects of leprosy control vary among stakeholders. Perspectivist approaches to methodologically sound operational research could guide planning for effective case detection and patient care during the post-elimination era.