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.

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.

Determinação social da hanseníase e o racismo brasileiro / Social determination of leprosy and Brazilian racism

A hanseníase permanece sendo um problema de saúde pública e com alta taxa de transmissibilidade e incidência em países de baixa e média renda, tornando-os endêmicos. Por serem poucos os estudos sobre a epidemiologia, ainda há grande dificuldade na intervenção e definição dos grupos alvo da doença, assim, aprofundar sobre se mostra importante para o combatê-la. O Brasil é o segundo maior país com números de casos de hanseníase, ficando atrás apenas da Índia, por isso, estudos no país são cruciais. A partir de uma revisão narrativa, foi investigado o perfil epidemiológico da hanseníase no Brasil e a sua relação com a desigualdade social. Partindo disso, foram relacionados dados sobre a vulnerabilidade social de pessoas negras no Brasil e o fato disto coincidir com os dados epidemiológicos de risco de hanseníase no país. Para isso, utilizou-se como orientação deste trabalho, os conceitos de determinação social da saúde e racismo estrutural. Por fim, a partir do conceito de necropolítica, a revisão relacionou esses dados coincidentes intencionando discutir se a hanseníase é uma doença negligenciada ou são as pessoas acometidas os negligenciados. As conclusões foram que há possibilidade de conexão entre os dados da epidemiologia da hanseníase no Brasil e a desigualdade social e racial do país; que o conceito de necropolítica é válido e possibilita um aprofundamento na discussão sobre hanseníase e negligência; e que é importante que hajam medidas de reparação histórica quando falamos de desigualdade racial, como a busca por um cenário político mais equitativo

Leprosy remains a public health problem and with a high rate of transmissibility and incidence in low- and middle-income countries, making them endemic. Because there are few studies on epidemiology, there is still great difficulty in intervening and defining the target groups of the disease, thus, going deeper into it is important to combat it. Brazil is the second largest country with numbers of leprosy cases, second only to India, therefore, studies in the country are crucial. Based on a narrative review, the epidemiological profile of leprosy in Brazil and its relationship with social inequality were investigated. Based on this, data on the social vulnerability of black people in Brazil were related and the fact that this coincides with epidemiological data on the risk of leprosy in the country. For this, the concepts of social determination of health and structural racism were used as guidelines for this work. Finally, from the concept of necropolitics, the review related these coincident data intending to discuss whether is leprosy a neglected disease or are the people affected the neglected. The conclusions were that there is a possibility of connection between data on the epidemiology of leprosy in Brazil and the country's social and racial inequality; that the concept of necropolitics is valid and allows for a deeper discussion on leprosy and neglect; and that it is important that there are historical reparation measures when we talk about racial inequality as the search for a more equitable political scenario

A cluster randomized trial for improving mental health and well-being of persons affected by leprosy or buruli ulcer in Nigeria: A study protocol.

This protocol describes a study in which we would assess the effect of using community lay counselors, self-help groups (SHGs), and trained frontline health workers to reduce mental disorders and improve quality of life (QOL) of persons affected by leprosy or Buruli ulcer (BU). A cluster randomized controlled study design will be employed. The study will involve persons affected by leprosy or BU. Ten local government areas (clusters) with the highest number of notified leprosy or BU cases between 2014 and 2018 in Southern Nigeria will be purposively selected. The clusters will be randomized into intervention and control groups using a computer-generated list of random numbers. At baseline, data were collected using the following validated questionnaires, Patient Health Questionnaire, Generalized Anxiety Disorder questionnaire, Stigma Assessment and Reduction of Impact Scale, World Health Organization QOL BREF and Warwick-Edinburgh Mental Well-being scale among persons affected by leprosy or BU. The intervention will last for 2 years and will involve use of community lay counselors, SHGs, and appropriately trained frontline health workers in reducing mental disorders and improving QOL of persons affected by leprosy or BU. This project postulates that the reduction of burden of mental health problems and improved QOL among persons affected by leprosy or BU could be achieved through a holistic approach involving SHGs, appropriately trained community opinion leaders, and general health-care workers as well as a functional referral system. If successful, the model will be integrated into the activities of the National Tuberculosis and Leprosy Control Programme and scaled up nationwide. Trial registration: ISRCTN Registry: ISRCTN 83649248. https://trialsearch. who.int/Trial2.aspx? TrialID % ISRCTN83649248 Prospectively registered.

The life experience of leprosy families in maintaining interaction patterns in the family to support healing in leprosy patients in Indonesian society. A phenomenological qualitative study.

BACKGROUND: Family involvement in overcoming the severity of leprosy is very important in the life of leprosy sufferers in communities who experience the clinical and, psychological, social and behavioral consequences of the disease. However, this need, psychosocial, is felt to be not optimal. This study is to identify how the experiences of family members as caregivers provide assistance to individuals with leprosy in improving healing and maintaining patterns of interaction in the family. METHODS: The design uses qualitative research with in-depth, face-to-face interviews with family members in a semi-structured manner with the hope of obtaining complete data. Using purposive sampling with Participatory Interpretative Phenomenology analysis, there are 12 families with 15 family members consisting of 4 men and 11 women. RESULTS: This study produced a family theme that tried to follow what would happen to individuals with leprosy, with four sub-categories: 1) Using various coping alternatives to recognize the disease, 2) Family members in the shadow of leprosy, 3) Trying to empathize with other family members. sick, 4) Caring for the emotional response of the family and seeking support. CONCLUSIONS: This analysis shows that deficiency in cognitive aspects can be closed by maintaining a lifestyle in the family through efforts to understand, support, establish communication, increase maximum involvement in restoring self-confidence, especially in individuals with leprosy with psychosocial problems in the family. The results of this study can be used as psychosocial support in maintaining communication between family members to support treatment programs and accelerate the recovery of leprosy.

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).

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.

Knowledge, attitudes and practices of health professionals towards people living with lymphoedema caused by lymphatic filariasis, podoconiosis and leprosy in northern Ethiopia.

BACKGROUND: Podoconiosis, lymphatic filariasis and leprosy are highly stigmatised neglected tropical diseases that cause lymphoedema. Their enormous impacts on health-related quality of life, mental health and economic productivity can be significantly reduced by morbidity management and disability prevention (MMDP) services, but to deliver such services requires appropriate training of healthcare professionals. The aim of this study was to assess the knowledge, attitudes and practices (KAP) of rural Ethiopian healthcare professionals towards people with lymphoedema as a way to assess training needs. METHODS: This study used questionnaires to quantitatively assess KAP towards people with lymphoedema among rural healthcare professionals in northwest Ethiopia before and 12 months after a short training intervention. RESULTS: Questionnaires were administered to 14 health professionals at baseline and 21 at follow-up. At baseline, 71% (10/14) were found to hold at least one stigmatising attitude towards lymphoedema patients, compared with 66% (14/21) at follow-up. Large gaps in knowledge were noted, with many unable to identify ways of treating/preventing the diseases. CONCLUSIONS: This study showed high proportions of healthcare workers holding stigmatising views and lacking essential knowledge about lymphoedema. To maximise the impact of MMDP interventions, further research is urgently needed to understand how to address these issues.

Aspectos psicossociais associados à falha terapêutica da poliquimioterapia da hanseníase no estado de São Paulo, Brasil / Psychosocial aspects associated with therapeutic failure of multidrug therapy for leprosy in the state of São Paulo, Brazil

Na hanseníase, o fracasso na conclusão do esquema terapêutico da poliquimioterapia (PQT) é um dos motivos pela ocorrência de falhas terapêuticas, contribuindo para a transmissão continuada do bacilo, desenvolvimento de resistência aos medicamentos e necessidade de retratamento. Portanto, o objetivo deste estudo foi avaliar os componentes psicossociais dos pacientes submetidos a um ou mais tratamentos da PQT. Estudo de natureza qualitativa, realizado em Bauru, São Paulo, com 11 pacientes, por meio de entrevistas semiestruturadas: três sem retratamento e oito com retratamento. A interpretação dos dados foi realizada a partir das árvores de associação, derivada da análise de conteúdo de Bardin. Foram definidos cinco eixos temáticos: estigma social, autoestigma, relações interpessoais, atividade profissional, cuidados do paciente com a saúde e falhas na assistência profissional ao paciente. Os resultados indicaram que, apesar dos pacientes relatarem experiências de discriminação social, baixa autoestima, medo da rejeição e necessidade de sigilo do diagnóstico, os familiares funcionavam como rede de apoio. No trabalho, houve maior ocorrência de afastamentos, exonerações e benefícios trabalhistas. Falhas na assistência profissional e alguns cuidados do paciente com a saúde podem se constituírem fatores que contribuem para a necessidade de retratamento da PQT. A investigação desses componentes psicossociais pode fornecer subsídios para o planejamento das ações educativas dos profissionais de saúde a fim de evitar o retratamento da PQT, reduzir as falhas terapêuticas e favorecer à adesão ao tratamento.

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.

Compreendendo o sentido de ser-com reações hansênicas: implicações para o cuidado de Enfermagem / Understanding the meaning of being with hansenic reactions: implications for nursing care / Comprender el significado de estar con reacciones hansénicas: implicaciones para el cuidado de enfermería

Objetivo: compreender o sentido de ser-com reações hansênicas. Método: Estudo alicerçado no método fenomenológico hermenêutico de Martin Heidegger, realizado a partir de 25 entrevistas individuais com pacientes em tratamento ambulatorial para reações hansênicas, em uma unidade de saúde especializada localizada no estado do Pará, Brasil. Resultados: Duas unidades temáticas foram organizadas: "Significando as reações hansênicas" e "Convivendo com as reações hansênicas". Para os participantes, viver com reações hansênicas significa dor, vergonha, desesperança, medo, incerteza e preocupações que transformam profundamente o cotidiano. O sentido de ser-com reações hansênicas se desvela quase sempre na impessoalidade, ambiguidade, curiosidade e na publicidade da vida, em que o ser-aí se vê a partir dos outros e não de si mesmo. Considerações finais: Este estudo proporciona conhecimentos importantes para o cuidado de enfermagem às pessoas que vivem com reações hansênicas, na medida em que compreender significados e sentidos é importante para impulsionar a prática de um cuidado de enfermagem sensível, empático e preocupado com o diálogo e com as necessidades do ser-aí no mundo, onde a cura se desvela nas práticas de cuidado com-o-outro e não para-o-outro. (AU)

Objective: To understand the meaning of being-with leprosy reactions. Methods: Study based on Martin Heidegger's hermeneutical phenomenological method, conducted from 25 individual interviews with patients undergoing treatment for leprosy reactions, in a specialized health unit located in the state of Pará, Brazil. Results: Two thematic units were organized: "Signifying leprosy reactions" and "Living with leprosy reactions". For the participants, living with leprosy reactions means pain, shame, hopelessness, fear, uncertainty and concerns that profoundly transform daily life. The sense of being-with leprosy reactions is almost always revealed in the impersonality, ambiguity, curiosity and publicity of life, in which the being-there is seen from other beings and not from oneself. Conclusion: This study provides important knowledge for nursing care to people living with leprosy reactions, as understanding meanings and senses is important to boost the practice of sensitive, empathic and concerned with dialogue and with nursing care. the needs of the being-there in the world, where the cure is revealed in the care practices with-the-other and not for the-other. (AU)

Objetivo: Comprender el significado de las reacciones de estar-con lepra. Métodos: Estudio basado en el método fenomenológico hermenéutico de Martin Heidegger, realizado a partir de 25 entrevistas individuales a pacientes en tratamiento ambulatorio por reacciones leprosas, en una unidad de salud especializada ubicada en el estado de Pará, Brasil. Resultados: Se organizaron dos unidades temáticas: "Significando reacciones leprosas" y "Viviendo con reacciones leprosas". Para los participantes, vivir con reacciones leprosas significa dolor, vergüenza, desesperanza, miedo, incertidumbre y preocupaciones que transforman profundamente la vida diaria. La sensación de ser-con reacciones leprosas se revela casi siempre en la impersonalidad, ambigüedad, curiosidad y publicidad de la vida, en la que el ser-allí se ve desde los demás y no desde uno mismo. Conclusion: Este estudio aporta conocimientos importantes para el cuidado de enfermería a las personas que viven con reacciones leprosas, ya que la comprensión de significados y sentidos es importante para impulsar la práctica de la sensibilidad, la empatía y la preocupación por el diálogo y el cuidado de enfermería. el mundo, donde la cura se revela en las prácticas de cuidado con el otro y no para el otro. (AU)

Inequality of gender, age and disabilities due to leprosy and trends in a hyperendemic metropolis: Evidence from an eleven-year time series study in Central-West Brazil.

The present study aimed to investigate the epidemiological situation of leprosy (Hansen's Disease), in a hyperendemic metropolis in the Central-West region of Brazil. We studied trends over eleven years, both in the detection of the disease and in disabilities, analyzing disparities and/or differences regarding gender and age. This is an ecological time series study conducted in Cuiabá, capital of the state of Mato Grosso. The population consisted of patients diagnosed with leprosy between the years 2008 and 2018. The time series of leprosy cases was used, stratifying it according to gender (male and female), disability grade (G0D, G1D, G2D, and not evaluated) and age. The calendar adjustment technique was applied. For modeling the trends, the Seasonal-Trend decomposition procedure based on Loess (STL) was used. We identified 9.739 diagnosed cases, in which 58.37% were male and 87.55% aged between 15 and 59 years. Regarding detection according to gender, there was a decrease among women and an increase in men. The study shows an increasing trend in disabilities in both genders, which may be related to the delay in diagnosis. There was also an increasing number of cases that were not assessed for disability at the time of diagnosis, which denotes the quality of the services.

Changing perception and improving knowledge of leprosy: An intervention study in Uttar Pradesh, India.

INTRODUCTION: Since ancient times leprosy has had a negative perception, resulting in stigmatization. To improve the lives of persons affected by leprosy, these negative perceptions need to change. The aim of this study is to evaluate interventions to change perceptions and improve knowledge of leprosy. METHODOLOGY/PRINCIPAL FINDINGS: We conducted a pre-post intervention study in Fatehpur and Chandauli districts, Uttar Pradesh, India. Based on six steps of quality intervention development (6SQuID) two interventions were designed: (1) posters that provided information about leprosy and challenged misconceptions, and (2) meetings with persons affected by leprosy, community members and influential people in the community. The effect of the interventions was evaluated in a mixed-methods design; in-depth interviews, focus group discussions, and questionnaires containing a knowledge measure (KAP), two perception measures (EMIC-CSS, SDS) and an intervention evaluation tool. 1067 participants were included in Survey 1 and 843 in Survey 2. The interventions were effective in increasing knowledge of all participant groups, and in changing community and personal attitudes of close contacts and community members (changes of 19%, 24% and 13% on the maximum KAP, EMIC-CSS and SDS scores respectively, p<0.05). In Survey 1, 13% of participants had adequate knowledge of leprosy versus 53% in Survey 2. Responses showed stigmatizing community attitudes in 86% (Survey 1) and 61% (Survey 2) of participants and negative personal attitudes in 37% (Survey 1) and 19% (Survey 2). The number of posters seen was associated with KAP, EMIC-CSS and SDS scores in Survey 2 (p<0.001). In addition, during eight post-intervention focus group discussions and 48 interviews many participants indicated that the perception of leprosy in the community had changed. CONCLUSIONS/SIGNIFICANCE: Contextualized posters and community meetings were effective in changing the perception of leprosy and in increasing leprosy-related knowledge. We recommend studying the long-term effect of the interventions, also on behavior.

The impact of podoconiosis, lymphatic filariasis, and leprosy on disability and mental well-being: A systematic review.

Leprosy, podoconiosis, and lymphatic filariasis (LF) are among the priority neglected tropical diseases (NTDs) in Ethiopia. The disability, psychosocial, and mental health status of people affected by these NTDs are still overlooked in global NTD discourse. The objective of this systematic review was to synthesize the existing evidence describing the disability, psychosocial, and mental health status of people affected by leprosy, podoconiosis, and LF prior to developing a holistic physical and psychosocial care package for these individuals. We searched papers reporting on disability, psychosocial, and mental health status linked to these 3 NTDs. The protocol was registered in PROSPERO with registration number CRD42019128400. Peer-reviewed articles were searched and extracted from Medline, PsycINFO, Global Health, and Embase. Articles published in English, irrespective of the year of publication, using a quantitative study methodology, were included. Abstracts and full texts were reviewed by 2 reviewers. Data were extracted and narratively summarized, as the studies were heterogeneous and used different outcome measures. Out of 1,318 titles/abstracts screened and 59 full text studies reviewed, 24 fulfilled the inclusion criteria. Fourteen studies provided evidence of the disability associated with leprosy, podoconiosis, or LF. Ten studies provided evidence on the association between the 3 NTDs and mental health or psychosocial outcomes. The prevalence of grade 2 disability varied from 3.9% to 86%. The most commonly reported mental health impacts were depression and mental distress. A high burden of mental illness was reported, varying from 12.6% to 71.7%; the suicidal ideation was also high (18.5%). In conclusion, disability and poor psychosocial and mental health status are associated with leprosy, podoconiosis, and LF. For optimum management of these NTDs, holistic care including both physical and psychosocial interventions is vital.

Autocuidado em hanseníase sob a ótica de grupos operativos: uma abordagem qualitativa / Self-care in leprosy from the perspective of operative groups: a qualitative approach / Autocuidado de la enfermedad de Hansen desde la perspectiva de los grupos operativos: abordaje cualitativo

OBJETIVOS: Analisar um grupo de apoio ao autocuidado para pessoas acometidas pela hanseníase sob a ótica de grupos operativos. MÉTODO: Estudo qualitativo do tipo explicativo, realizado em uma unidade de saúde em um município de Pernambuco. Foi realizada a análise de conteúdo, na modalidade análise temática proposta por Bardin. RESULTADOS: Os resultados apontaram características do grupo relacionadas aos seis vetores da teoria de Pichon-Rivière: afiliação e pertença, cooperação, pertinência, comunicação, aprendizagem e tele. DISCUSSÃO: O acompanhamento de um grupo de autocuidado em hanseníase proporciona uma abrangência de significados e reflexões. Estar inserido em um grupo aumenta as oportunidades de reconstrução da autoconfiança, autoestima e inserção na comunidade. CONCLUSÃO: O grupo de apoio ao autocuidado em hanseníase em foco se caracteriza como um grupo operativo. Estudos que investiguem os fatores implícitos dos GACs ainda são necessários, sobretudo no que diz respeito às características dos grupos nas diferentes unidades de saúde.

OBJECTIVES: To analyze a self-care support group for people affected by leprosy from the perspective of operative groups. METHOD: A qualitative study of the explanatory type, carried out in a health unit in a municipality of Pernambuco. Content analysis was carried out, in the thematic analysis proposed by Bardin. RESULTS: The results indicated characteristics of the group related to the six vectors of the Pichon-Rivière theory: affiliation and belonging, cooperation, pertinence, communication, learning and tele. DISCUSSION: The monitoring of a self-care group in leprosy provides a range of meanings and reflections. Being part of a group increases the opportunities for rebuilding self-confidence, self-esteem and insertion in the community. CONCLUSION: The leprosy self-care support group in focus is characterized as an operative group. Studies that investigate the implicit factors of the SCGs are still needed, especially with regard to the characteristics of the groups in the different health units.

OBJETIVO: Analizar un grupo de apoyo para el autocuidado de personas afectadas por la enfermedad de Hansen (lepra) desde la perspectiva de los grupos operativos. MÉTODO: Estudio cualitativo de tipo explicativo, realizado en una unidad de salud de un municipio de Pernambuco. El análisis de contenido se realizó según la modalidad de análisis temático propuesto por Bardin. RESULTADOS: Los resultados indicaron que el grupo tenía características relacionadas con los seis vectores de la teoría de Pichon-Rivière: afiliación y pertenencia, cooperación, pertinencia, comunicación, aprendizaje y telé. DISCUSIÓN: El seguimiento de un grupo para el autocuidado de la enfermedad de Hansen ofrece una cobertura de significados y reflexiones. Formar parte de un grupo aumenta las oportunidades de reconstruir la confianza en uno mismo, la autoestima y la inserción en la comunidad. CONCLUSIÓN: El grupo de apoyo para el autocuidado de la enfermedad de Hansen se caracteriza, principalmente, por ser un grupo operatorio. Aún se necesitan estudios que investiguen los factores implícitos de los GAC, especialmente en lo que respecta a las características de los grupos en las diferentes unidades de salud.

Strengthening individual and family resilience against leprosy-related discrimination: A pilot intervention study.

BACKGROUND: Leprosy and leprosy-related stigma can have a major impact on psychosocial wellbeing of persons affected and their family members. Resilience is a process that incorporates many of the core skills and abilities which may enable people to address stigma and discrimination. The current study aimed to develop and pilot an intervention to strengthen individual and family resilience against leprosy-related discrimination. METHODOLOGY: We used a quasi-experimental, before-after study design with a mixed methods approach. The 10-week family-based intervention was designed to strengthen the resilience of individuals and families by enhancing their protective abilities and capacity to overcome adversity. The study was conducted in two sites, urban areas in Telangana state, and in rural areas in Odisha state, India. Persons affected and their family members were included using purposive sampling. Two questionnaires were used pre-and post-intervention: the Connor-Davidson Resilience Scale (CD-RISC, maximum score 100, with high scores reflecting greater resilience) and the WHOQOL-BREF (maximum score of 130, with higher scores reflecting higher quality of life). In addition, semi-structured interviews were conducted post-intervention. Data were collected at baseline, a few weeks after completion of the intervention, and in the Odisha cohort again at six months after completion. Paired t-tests measured differences pre- and post- intervention. Qualitative data were thematically analysed. FINDINGS: Eighty participants across 20 families were included in the study (23 persons affected and 57 family members). We found a significant increase in CD-RISC scores for persons affected and family members from Odisha state (baseline 46.5, first follow-up 77.0, second follow-up 70.0), this improvement was maintained at six-month follow-up. There was no increase in CD-RISC scores post-intervention among participants from Telangana state. WHOQOL-BREF scores were significantly higher at follow-up for persons affected in both states, and for family members in Odisha state. No families dropped out of the study. In the qualitative feedback, all participants described drawing benefit from the programme. Participants especially appreciated the social dimensions of the intervention. CONCLUSION: This pilot study showed that the 10-week family-based intervention to strengthen resilience among persons affected by leprosy and their family members was feasible, and has the potential to improve resilience and quality of life. A large-scale efficacy trial is necessary to determine the effectiveness and long-term sustainability of the intervention.

O estigma sobre a mulher portadora de hanseníase: um estudo do Asilo Colônia Lauro de Souza Lima / The woman with leprosy stigma: a colony Asylum Lauro de Souza Lima study

Analisar a concepção da mulher portadora de hanseníase na unidade hospitalar Instituto Lauro de Souza Lima (antigo Aimorés), localizado no município de Bauru Estado de São Paulo , com o objetivo de verificar a questão do preconceito vivenciado pela mulher portadora do bacilo de Hansen, como seria a sua inserção na sociedade hospitalar e como seriam aceitas as sequelas que a doença causava no corpo e em seu psicológico. Este estudo é importante para observar como a mulher portadora de hanseníase foi julgada e condenada por padrões médicos e morais de convívio sociais considerados adequados para a vida social e sadia. E como a doença poderia estabelecer condutas de vivência e padrões de convívio sociais, comportamentais e psicológicos distantes daqueles experimentados fora do asilo colônia. A pesquisa foi realizada por meio de texto de memória sobre o asilo colônia Lauro de Souza Lima e de obras historiográficas sobre a temática(AU).

This paper analyzes the woman with leprosy stigma at Lauro de Souza Lima Institute (former Aimorés) located at Bauru, São Paulo State, aiming to verify the prejudice experienced by women with Hansen's bacillus, their insertion in the hospital society and how they would be accepted with body and psychological sequels caused by the disease. This study is important to observe how the woman with leprosy was judged and condemned by medical, moral and social living standards considered adequate for social and healthylife. As well as, how the disease could establish conducts of social, behavioral and psychological living patterns far from those experienced outside the colony asylum. The research was carried out by means of a memory text on the Lauro de Souza Lima colony asylum and historiographical works on the theme(AU).

PODCAST Minutos para a Hanseníase - EPISÓDIO # 1 - O que é a hanseníase?

Pessoas nas ruas e jovens escolhem as perguntas sobre o que eles conhecem da hanseníase de uma forma geral. Convidamos os nossos entrevistados e você, ouvinte, a refletir algumas: questões os principais aspectos da doença, o acesso a informações educativas e o estigma associado à hanseníase. Neste primeiro episódio, contamos com a participação de Sacha Nogueira, professora do Departamento de Enfermagem da Universidade Federal do Ceará (UFC) e coordenadora da Liga Acadêmica em Doenças Estigmatizantes (Lades / UFC). Na conversa, trazemos um contexto histórico da hanseníase, informações iniciais sobre sinais e sintomas, o panorama atual no Brasil e respostas às dúvidas dos jovens fontes.