Understanding the burden of poor mental health and wellbeing among persons affected by leprosy or Buruli ulcer in Nigeria: A community based cross-sectional study.

BACKGROUND: Skin neglected tropical diseases including leprosy and Buruli ulcer (BU)are a group of stigmatizing and disability-inducing conditions and these aspects of the diseases could lead to poor mental health. The study was designed to assess the burden of poor mental health and wellbeing among persons affected by leprosy or BU in Nigeria. METHODS: A community based cross-sectional study design was employed. The study involved persons affected by leprosy or BU. Ten local government areas with the highest number of notified leprosy or BU cases between 2014 and 2018 in southern Nigeria were purposively selected. Information were obtained using Patient Health Questionnaire-9 (PHQ-9), Generalized Anxiety Disorders-7 (GAD-7), Warwick-Edinburgh Mental Well-being Scale (WEMWBS) and OSLO Social Support Scale. Outcome measure was poor mental health/wellbeing and was determined by proportion of respondents who had depressive symptoms, anxiety disorder and poor mental wellbeing. RESULTS: A total of 635 persons affected by leprosy or BU participated in the study. The mean age of respondents was 43.8±17.0 years and highest proportion, 22.2% were in age group, 40-49 years. Majority of respondents, 50.7% were males. A higher proportion of respondents, 89.9% had depressive symptoms, 79.4% had anxiety disorders and 66.1% had poor mental wellbeing. Majority, 57.2% had poor mental health/wellbeing. Among the respondents, there was a strong positive correlation between depression and anxiety scores, (r = 0.772, p<0.001). There was a weak negative correlation between depression score and WEMWBS score, (r = -0.457, p<0.001); anxiety score and WEMWBS score, (r = -0.483, p<0.001). Predictors of poor mental health/wellbeing included having no formal education, (AOR = 1.9, 95%CI: 1.1-3.3), being unemployed, (AOR = 3.4, 95%CI: 2.2-5.3), being affected by leprosy, (AOR = 0.2, 95%CI: 0.1-0.4) and having poor social support, (AOR = 6.6, 95%CI: 3.7-11.8). CONCLUSIONS: The burden of poor mental health/wellbeing among persons affected by leprosy or BU is very high. There is need to include mental health interventions in the management of persons affected with leprosy or BU. Equally important is finding a feasible, cost-effective and sustainable approach to delivering mental health care for persons affected with leprosy or BU at the community level. Improving educational status and social support of persons affected by leprosy or BU are essential. Engaging them in productive activities will be of essence.

Body map stories from Colombia: experiences of people affected by leprosy and the influence of peers during diagnosis and treatment.

INTRODUCTION: Almost one third of people affected by leprosy in Colombia suffer from disability, which often results from delayed diagnosis and treatment. We aimed to explore the experience of people affected by leprosy during the process of diagnosis and treatment and if and how this experience was influenced by peers. METHODS: A qualitative study using body map stories was conducted from October 2019 to February 2020 in Colombia. Adult people affected by leprosy were recruited through patient associations in different cities. We conducted three sessions with an average duration of 2-3 h per participant, during which the participants created a painted map of their body and chose symbols to represent their experience, while being engaged in an informal interview. The sessions were audio recorded, transcribed verbatim and analyzed thematically by an interdisciplinary team, consisting of physicians, social workers and a person affected by leprosy. RESULTS: The 17 study participants (11 female) were aged 20 to 70 years. Leprosy-related manifestations ranged from no to advanced disability. Some participants were active members of associations for people affected by leprosy. Three main themes were identified during analysis: (1) A long pathway to diagnosis, (2) Therapy as a double-edged sword and (3) The influence of other people affected by leprosy. The participants described an often years-long process until being diagnosed, which was marked by insecurities, repeated misdiagnosis, and worsening mental and physical health. Delayed diagnosis was related to late health care seeking, but also to inadequate health communication, lack of leprosy-related knowledge and negligence among health care workers. A high desire to cure motivated the participants to take their medication rigorously, despite the high treatment burden. Support from peers, either within the own social environment or provided from associations, contributed to a faster diagnosis and increased therapy adherence. Peers helped to recognize the symptoms, urged patients to seek care, recommended physicians with leprosy-related knowledge and provided a realistic example of both disease severity and curability. CONCLUSION: People affected by leprosy experience a significant burden during the process of diagnosis and treatment. Involving well-trained peers could foster early diagnosis, treatment compliance and prevention of disability.

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.

Task sharing for the management of leprosy by nurses in a tertiary healthcare setting of Northern India.

BACKGROUND: This study aimed to assess the effectiveness of nurse-led interventions in managing leprosy due to a shortage of dermatologists and other healthcare professionals. METHODS: A total of 100 leprosy patients were divided into experimental (n=50) and control groups (n=50). The intervention included face-to-face counseling by a trained nurse, motivational videos and exercise demonstrations. The control group received standard care. The primary outcome of interest was treatment adherence (Adherence to Refills and Medications Scale); other assessed outcomes included changes in perceived stigma (Stigma Assessment and Reduction of Impact scale), depression (Patient Health Questionnaire-9), anxiety (Generalized Anxiety Disorder seven-item) and quality of life (WHO QOL-BREF Scale) from baseline to week 8. RESULTS: The intervention group had better treatment adherence (p<0.001). At baseline, moderately severe and severe depression prevalence was 18% and 28%, respectively, and anxiety was 25%, with no intergroup differences. Anxiety significantly decreased in the intervention group (p<0.001), but depression remained similar (p=0.291). Perceived stigma improved notably, especially in disclosure of concern (p<0.001), internal stigma (p<0.001) and anticipated stigma (p<0.001). Quality of life scores improved in the intervention group vs controls. CONCLUSION: Nurse-led interventions effectively enhanced quality of life and treatment adherence and reduced anxiety, depression and perceived stigma among leprosy patients. The study recommends strengthening the capacity of nurses for active involvement in leprosy care.

A experiência da sexualidade em mulheres com hanseníase: uma análise de conteúdo / The experience of sexuality in women with leprosy: a content analysis

Ao propor explorar o entrelaçamento entre a experiência da mulher e a vivência do corpo doente, pretendeu-se com essa pesquisa identificar e descrever os impactos da vivência da hanseníase na sexualidade de mulheres de modo a caracterizar os desdobramentos psicológicos e atitudinais em relação a vivência de gênero e a vida sexual. A pesquisa realizada partiu de uma abordagem qualitativa, para tanto foram entrevistadas 9 mulheres com hanseníase, maiores de 18 anos e em tratamento da doença por ao menos 2 anos. Após realizado o tratamento dos dados, o método de análise de conteúdo foi utilizado para identificar aproximações e diferenças nos discursos das participantes a partir de duas categorias: 1) Impactos da hanseníase na vivência de gênero; 2) Impactos da hanseníase na vida sexual. A análise das narrativas das participantes apontaram para impactos psicológicos relacionados a experiência de gênero como dificuldades de imagem corporal e autoestima por conta da doença e tratamento, isolamento social e dificuldade de se expor a novos contextos relacionais. Em relação à vida sexual, a análise indica maior dificuldade nas práticas sexuais e na experiência de prazer devido a diversos fatores como: baixa autoestima; a influência dos medicamentos na libido; a diminuição da sensibilidade perceptiva do toque; medo de contaminar parceiros; e dores neuropáticas durante as práticas sexuais. Destarte, a hanseníase gerou dificuldades na vivência da sexualidade das participantes e enquanto um tópico negligenciado merece mais atenção nos atendimentos multiprofissionais.

Planejamento e avaliação de oficina educativa na formação continuada dos profissionais de saúde que atuam com usuários em tratamento da hanseníase / Planning and evaluation of educational workshop in the ongoing training of health professionals working with patients undergoing lepra treatment

Este estudo buscou avaliar a ocorrência de repertórios de ensino na formação profissional de pesquisadores que atuam na hanseníase, bem como estimular evidências de aprendizagem com enfermeiras que participaram de uma oficina educativa, baseada em condições de ensino planejadas. Participaram 15 enfermeiras de uma instituição pública de saúde que participaram de uma oficina educativa, com o desenvolvimento das seguintes atividades: 1) Aplicação do Pré-Teste para avaliar o conhecimento sobre o tratamento; 2) Discussão de condutas adotadas no cotidiano profissional, utilizando três relatos de caso; 3) Entrega e leitura de uma cartilha educativa sobre o tratamento da hanseníase; 4) Discussão geral para avaliar se as condutas adotadas correspondiam às recomendações descritas na cartilha; 5) Aplicação do Pós-teste para avaliar a média percentual do conhecimento antes e após à oficina. Os repertórios dos profissionais que executaram as oficinas consistiram em induzir a participação das enfermeiras a responderem e formularem perguntas e estimular o grupo a identificar na cartilha condutas adequadas para o tratamento da hanseníase. As enfermeiras apresentaram evidências de aprendizagem ao admitirem verbalmente a aquisição de conhecimentos, principalmente sobre a dose supervisionada, o tratamento na gravidez, a amamentação e a proibição de bebida alcoólica. Verificou-se aumento percentual relevante das respostas obtidas no pós-teste, principalmente quanto à "saúde da mulher" (49%), "informações gerais" (21,6%) e "utilização dos remédios" (11,4%). Foram constatados repertórios de ensino na forma de atuação dos pesquisadores e evidências de aprendizagem das enfermeiras, coerentes com as condições de ensino planejadas, sustentadas pelos conceitos da análise do comportamento.

This study aimed to assess the occurrence of teaching repertoires in the professional training of researchers working in leprosy, as well as to stimulate evidence of learning with nurses who participated in an educational workshop based on planned teaching conditions. Fifteen nurses from a public health institution participated in the workshop, engaging in the following activities: 1) Pre-test application to assess knowledge about treatment; 2) Discussion of daily professional practices using three case reports; 3) Delivery and reading of an educational booklet on leprosy treatment; 4) General discussion to assess whether the practices adopted corresponded to the recommendations described in the booklet; 5) Post-test application to evaluate the percentage average of knowledge before and after the workshop. The teaching repertoires of the professionals conducting the workshops included inducing nurse participation in answering and formulating questions and encouraging the group to identify appropriate leprosy treatment practices in the booklet. Nurses demonstrated evidence of learning by verbally acknowledging knowledge acquisition, particularly regarding supervised dosage, treatment during pregnancy, breastfeeding, and the prohibition of alcohol consumption. A significant percentage increase in post-test responses was observed, especially in "women's health" (49%), "general information" (21.6%), and "medication usage" (11.4%). Teaching repertoires in the researchers' actions and evidence of nurses' learning were consistent with the planned teaching conditions, supported by behavior analysis concepts.

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.

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.

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.

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.