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)

"A reação é o mais difícil, é pior que hanseníase": contradições e ambiguidades na experiência de mulheres com reações hansênicas / "The reaction is the most difficult, it is worse than leprosy": contradictions and ambiguities in the experience of women with leprosy reactions

Resumo Estudo de abordagem socioantropológica, analisa a experiência de mulheres com reações hansênicas, quadro agudo de evolução crônica que acomete cerca da metade das pessoas que têm hanseníase. Foram entrevistadas sete mulheres com reações, acompanhadas por um serviço de referência em Cuiabá-MT, região com maior número de casos no Brasil. A análise foi realizada na modalidade temática e os resultados abrangem o contexto em que vivem, o aparecimento e interpretação das reações, as repercussões e dilemas de um "tratamento que adoece". As reações imbricam-se na trajetória da hanseníase e são marcadores do adoecimento por intensificarem a dor ou por causarem marcas e eritemas pelo corpo. Ao explicarem sua origem, as reações são inseridas em contextos abrangentes e situações de estresse ou tristeza. O tratamento torna-se um problema na medida em que afeta como elas se veem, processo que é acrescido e incorporado à situação estigmatizante causada pela hanseníase. Ter reações pode ser considerado "pior" do que ter hanseníase, pois nem sempre é possível prevê-las ou controlá-las; por isso, assume-se que a noção de cura requer outros sentidos, baseados na reconstrução cotidiana. Reitera-se a importância de abordar o problema em perspectiva que favoreça uma atenção integral aos adoecidos.

Abstract Study of socio-anthropological approach on the experience of women with leprosy reactions, an acute chronic evolution that affects half of those who have leprosy. Seven women with reactions were interviewed, accompanied by a reference service in Cuiabá-MT, the region with the highest number of cases in Brazil. The analysis was carried out in the thematic modality and the results cover the context in which they live, the appearance and interpretation of the reactions, the repercussions and dilemmas of a "treatment that gets sick". Reactions are embedded in the trajectory of leprosy and are markers of illness by intensifying pain or causing bruising and erythema throughout the body. In explaining their origin, reactions are inserted into broad contexts and situations of stress or sadness. Treatment becomes a problem as it affects how they look, a process that is added and incorporated into the stigmatizing situation caused by leprosy. Having reactions can be considered "worse" than having leprosy, since it is not always possible to predict or control them and therefore, it is assumed that the notion of cure requires other senses, based on daily reconstruction. It reiterates the importance of approaching the problem in a perspective that favors a comprehensive care for the patients.

'People like me don't make things like that': Participatory video as a method for reducing leprosy-related stigma.

The Stigma Assessment and Reduction of Impact project aims to assess the effectiveness of stigma-reduction interventions in the field of leprosy. Participatory video seemed to be a promising approach to reducing stigma among stigmatized individuals (in this study the video makers) and the stigmatisers (video audience). This study focuses on the video makers and seeks to assess the impact on them of making a participatory video and to increase understanding of how to deal with foreseeable difficulties. Participants were selected on the basis of criteria and in collaboration with the community health centre. This study draws on six qualitative methods including interviews with the video makers and participant observation. Triangulation was used to increase the validity of the findings. Two videos were produced. The impact on participants ranged from having a good time to a greater sense of togetherness, increased self-esteem, individual agency and willingness to take action in the community. Concealment of leprosy is a persistent challenge, and physical limitations and group dynamics are also areas that require attention. Provided these three areas are properly taken into account, participatory video has the potential to address stigma at least at three levels - intrapersonal, interpersonal and community - and possibly more.

Perceived Stigma towards Leprosy among Community Members Living Close to Nonsomboon Leprosy Colony in Thailand.

BACKGROUND: Interpretation of Leprosy as a sickness differs among society. The set of beliefs, knowledge and perceptions towards a disease play a vital role in the construction of stigma towards a disease. The main purpose of this study was to explore the extent and correlates of the perceived stigma towards leprosy in the community living close to the leprosy colony in Non Somboon region of Khon Kaen Province of Thailand. METHODS: A cross-sectional study was conducted among 257 leprosy unaffected community participants, above the age of 18 who were living close to the Leprosy colony in Non Somboon region of Thailand. Each participant was asked a questionnaire containing characteristics of the participants in terms of socio-demographic background and knowledge regarding the disease. In addition perceived stigma towards leprosy was measured using EMIC (Explanatory Model Interview Catalogue) questionnaire. RESULTS: Among EMIC items, shame or embarrassment in the community due to leprosy was felt by 54.5%, dislike to buy food from leprosy affected persons were 49.8% and difficulty to find work for leprosy affected persons were perceived by 47.1%. Higher total EMIC score was found in participants age 61 years or older (p = 0.021), staying longer in the community (p = 0.005), attending fewer years of education (p = 0.024) and who were unemployed (p = 0.08). Similarly, perceptions about leprosy such as difficult to treat (p = 0.015), severe disease (p = 0.004) and punishment by God (p = 0.011) were significantly associated with higher perceived stigma. CONCLUSIONS: Perceived stigma towards leprosy was found highest among participants with age 61 years or older, longer duration of stay in community close to the leprosy colony, lower duration of education and participants who were unemployed had higher perceived stigma. Similarly, participants with perceptions of leprosy such as difficult to treat, severe disease and punishment by God had higher perceived stigma towards leprosy. There is an urgent need of stigma reduction strategies focused on education and awareness concerning leprosy.

Stigma and social participation in Southern India: differences and commonalities among persons affected by leprosy and persons living with HIV/AIDS.

Stigma is a common phenomenon worldwide and infectious diseases like HIV/AIDS and leprosy are often associated with high levels of stigma. Several studies have been conducted concerning the effects of stigma and the impact on social participation, but comparative studies are rare. The objective of this study was to identify differences and similarities between HIV/AIDS and leprosy-related stigma. From April till July 2009, 190 questionnaire-based interviews were conducted to assess the levels of internalized stigma (Internalized Stigma of Mental Illness scale), perceived stigma (Explanatory Model Interview Catalogue stigma scale) and social participation (Participation scale) in a cross-sectional sample of people affected by leprosy (PL) and people living with HIV/AIDS (PLHA). Respondents were selected from several hospitals, charity projects and during home visits in Vellore district, Tamil Nadu. Our results showed that both PLHA (n = 95) and leprosy-affected respondents (n = 95) faced a substantial burden of internalized and perceived stigma, with the former reporting a significantly higher level of stigma. As a result, PLHA faced more frequent and also more severe participation restrictions than PL. Especially, restrictions in work-related areas were reported by the majority of the respondents. In conclusion, PLHA faced a significantly higher level of stigma and participation restriction than PL. However, the latter also reported a substantial burden of stigma and participation restrictions. The study suggests that it may be possible to develop joint interventions based on the commonalities found. More research is needed to define these more precisely and to test the effectiveness of such joint interventions in reducing stigma and improving social participation.