Experiences of living with leprosy: A systematic review and qualitative evidence synthesis.

OBJECTIVE: The objective of the review was to identify, appraise, and synthesise qualitative studies on the lived experience of individuals diagnosed with leprosy, the impact of the disease, and how they coped with the disease burden. INTRODUCTION: Leprosy is a chronic disease with long-term biopsychosocial impact and is a leading cause of preventable disabilities. It traps the individuals with leprosy in a vicious circle of disease, stigma, and poverty. The efforts to reduce stigma and discrimination and improve their quality of life have not kept pace with the success of the multidrug treatment. INCLUSION CRITERIA: This review considered published literature on the lived experience of individuals diagnosed with leprosy. There were no limitations on gender, background, or country. All qualitative or mixed-methods studies were accepted. METHODS: The review followed the JBI meta-aggregation approach for qualitative systematic reviews. A structured literature search was undertaken using multiple electronic databases: PubMed, Embase, Web of Science, and CINAHL. RESULTS: The search identified 723 publications, and there were 446 articles after deduplication. Forty-nine studies met the inclusion criteria. The final 173 findings were synthesised into ten categories and aggregated into four synthesised findings: biophysical impact, social impact, economic impact, and mental and emotional impact. These synthesised findings were consistent across the included studies from a patient's perspective. The way people coped with leprosy depended on their interpretation of the disease and its treatment. It affected their help-seeking behaviour and their adherence to treatment and self-care. The review has identified a multi-domain effect on the affected individuals, which goes beyond the biological and physical effects, looking at the social issues, specific difficulties, emotions, and economic hardships. CONCLUSIONS: The researchers, health professionals, and policymakers could use the synthesised findings to address the concerns and needs of the leprosy-affected individuals and offer appropriate support to manage their lives. SYSTEMATIC REVIEW REGISTRATION NUMBER: PROSPERO Registration number: CRD42021243223.

Epidemiological profile of leprosy in the state of Mato Grosso: descriptive study.

OBJECTIVE: To analyze the prevalence of leprosy cases using as parameters the number of diagnosed cases, age group, sex, clinical form of the disease, degree of physical disability, affected nerves, and therapeutic methods. METHODS: This was a descriptive study. Data were collected in the Information System for Notifiable Diseases (Sistema de Informações de Agravos de Notificação) from 2014 to 2017 in the state of Mato Grosso (MT), Brazil. RESULTS: In the studied period, 11,388 cases were notified in the state, with a higher prevalence in the year 2017. Most cases were diagnosed in individuals older than 15 years with a slight predominance of men. During diagnosis, there was prevalence of zero degree of physical disability and among individuals with affected nerves, mostly had less than five nerves affected. CONCLUSION: Analyzing the prevalence and epidemiological profile of leprosy cases in the state of Mato Grosso (MT) turns to be essential for coping with the disease, as it helps in its management and treatment, with an emphasis on multidisciplinary approach for the recovery of existing cases and prevention of new cases, especially at hyperendemic states.

Women and leprosy: interferences and experiences.

OBJECTIVE: to know the interferences of leprosy in women's lives and how they reinvent themselves in coping with the disease. METHOD: a descriptive study with a qualitative approach. The theoretical-methodological framework adopts an approximation to the cartographic method and some concepts of schizoanalysis, which were used to analyze the data. The tools used to produce the data were the interview and the logbook. The interviews were conducted from July to November 2019, at the participants' homes. RESULTS: the group consisted of nine women. To display the data, we were inspired by Deleuze's ideas about difference and repetition. The results were organized in three thematic axes that address the lives of these women affected by leprosy, which accompany concerns, anxieties and worries about the effects of the disease. The transformations in the female body, the financial maintenance itself due to the comorbidities caused by leprosy and its difficulties in guaranteeing rights are elements strongly pointed out by women. CONCLUSION: there is overlap and interference of the female condition in a patriarchal society that still accompanies it. We bet on the strength of becoming-a-woman and the need to consider them in their singularities and in their context for producing care permeated by meetings of the affirmation of the power of life.

Epidemiological profile of leprosy in the state of Mato Grosso: descriptive study / Perfil epidemiológico da hanseníase no estado de Mato Grosso: estudo descritivo

ABSTRACT Objective To analyze the prevalence of leprosy cases using as parameters the number of diagnosed cases, age group, sex, clinical form of the disease, degree of physical disability, affected nerves, and therapeutic methods. Methods This was a descriptive study. Data were collected in the Information System for Notifiable Diseases (Sistema de Informações de Agravos de Notificação) from 2014 to 2017 in the state of Mato Grosso (MT), Brazil. Results In the studied period, 11,388 cases were notified in the state, with a higher prevalence in the year 2017. Most cases were diagnosed in individuals older than 15 years with a slight predominance of men. During diagnosis, there was prevalence of zero degree of physical disability and among individuals with affected nerves, mostly had less than five nerves affected. Conclusion Analyzing the prevalence and epidemiological profile of leprosy cases in the state of Mato Grosso (MT) turns to be essential for coping with the disease, as it helps in its management and treatment, with an emphasis on multidisciplinary approach for the recovery of existing cases and prevention of new cases, especially at hyperendemic states.

RESUMO Objetivo Analisar a prevalência de casos de hanseníase, tendo como parâmetros número de casos diagnosticados, faixa etária, sexo, forma clínica da doença, grau de incapacidade física, nervos acometidos e esquema terapêutico. Métodos Trata-se de estudo descritivo. Os dados foram coletados no Sistema de Informações de Agravos de Notificação, referentes ao período de 2014 a 2017 e relativos ao estado do Mato Grosso (MT), Brasil. Resultados No período em estudo notificaram-se 11.388 casos no estado, com maior prevalência no ano de 2017. A maior parte dos casos diagnosticados foi em indivíduos com mais de 15 anos, com discreto predomínio no sexo masculino. Prevaleceu o grau zero de incapacidade física durante o diagnóstico e menos de cinco nervos em cada indivíduo, naqueles com nervos afetado. Conclusão A análise da prevalência e do perfil epidemiológico de casos da hanseníase no estado de Mato Grosso (MT) torna-se essencial para o enfrentamento da doença, pois auxilia no manejo e no tratamento, com ênfase no trabalho multiprofissional para recuperação dos casos já existentes e na prevenção de novos casos, especialmente em estados hiperendêmicos.

Women and leprosy: interferences and experiences / Mujeres y enfermedad de Hansen: interferencias y experiencias / Mulheres e hanseníase: interferências e vivências

Objective: to know the interferences of leprosy in women's lives and how they reinvent themselves in coping with the disease. Method: a descriptive study with a qualitative approach. The theoretical-methodological framework adopts an approximation to the cartographic method and some concepts of schizoanalysis, which were used to analyze the data. The tools used to produce the data were the interview and the logbook. The interviews were conducted from July to November 2019, at the participants' homes. Results: the group consisted of nine women. To display the data, we were inspired by Deleuze's ideas about difference and repetition. The results were organized in three thematic axes that address the lives of these women affected by leprosy, which accompany concerns, anxieties and worries about the effects of the disease. The transformations in the female body, the financial maintenance itself due to the comorbidities caused by leprosy and its difficulties in guaranteeing rights are elements strongly pointed out by women. Conclusion: there is overlap and interference of the female condition in a patriarchal society that still accompanies it. We bet on the strength of becoming-a-woman and the need to consider them in their singularities and in their context for producing care permeated by meetings of the affirmation of the power of life.

Resumo Objetivo: conocer las interferencias de la enfermedad de Hansen en la vida de las mujeres y cómo se reinventan en el afrontamiento de la enfermedad. Método: estudio de abordaje cualitativo. El marco teórico-metodológico adopta un acercamiento al método cartográfico y algunos conceptos de esquizoanálisis, que fueron utilizados para analizar los datos. Las herramientas utilizadas para producir los datos fueron la entrevista y el libro de registro. Las entrevistas se realizaron de julio a noviembre de 2019, en los domicilios de las participantes. Resultados: el grupo estuvo compuesto por nueve mujeres. Para presentar los datos, nos inspiramos en las ideas de Deleuze sobre la diferencia y la repetición. Los resultados se organizaron en tres ejes temáticos que abordan la vida de estas mujeres afectadas por la enfermedad de Hansen, que acompañan inquietudes, angustias y preocupaciones sobre los efectos de la enfermedad. Los cambios en el cuerpo femenino, la manutención económica propiamente dicha debido a las comorbilidades provocadas por la enfermedad de Hansen y sus dificultades para garantizar los derechos son elementos fuertemente señalados por las mujeres. Conclusión: hay una superposición e interferencia de la condición femenina en una sociedad patriarcal que aún la acompaña. Apostamos por la fuerza del devenir-mujer y la necesidad de considerarla en sus singularidades y en su contexto para la producción de cuidados forjados por encuentros para afirmar el poder de la vida.

Objetivo: conhecer as interferências da hanseníase na vida das mulheres e como elas se reinventam no enfrentamento da doença. Método: estudo de abordagem qualitativa. O referencial teórico-metodológico adota uma aproximação ao método cartográfico e alguns conceitos da esquizoanálise, que foram utilizados para analisar os dados. As ferramentas utilizadas para produção dos dados foram a entrevista e o diário de bordo. As entrevistas foram realizadas no período de julho a novembro de 2019, no domicílio das participantes. Resultados: o grupo foi composto por nove mulheres. Para apresentar os dados, nos inspiramos nas ideias de Deleuze relativas à diferença e repetição. Os resultados foram organizados em três eixos temáticos que abordam a vida dessas mulheres afetadas pela hanseníase, os quais acompanham inquietações, angústias e preocupações frente aos efeitos da doença. As alterações no corpo feminino, a própria manutenção financeira devido às comorbidades causadas pela hanseníase e as suas dificuldades nas garantias de direitos são elementos fortemente apontados pelas mulheres. Conclusão: há sobreposição e interferência da condição feminina em uma sociedade patriarcal que ainda a acompanha. Apostamos na força do devir-mulher e na necessidade de considerá-la em suas singularidades e em seu contexto para a produção do cuidado permeado por encontros de afirmação da potência da vida.

Type D personality is associated with poor quality of life, social performance, and psychological impairment in patients with moderate to severe psoriasis: A cross-sectional study of 130 patients.

BACKGROUND: Psoriasis is a systemic autoinflammatory disease that is related to an increased risk of organic and psychological comorbidities. Type D personality has been related to poor quality of life and worse physical and psychological outcomes in different diseases. AIMS: The aim of this study is to explore whether type D personality is associated with an increased risk of presenting physical and/or psychological comorbidities, their relationship with the capacity of social adaptation, and health-related quality of life (HRQOL) in patients with psoriasis. METHODS: This was a cross-sectional study. In all, 130 patients with moderate to severe psoriasis were included in this study. Participants completed the DS14 test and different validated questionnaires regarding quality of life and psychological morbidities. RESULTS: Type D personality was present in 38.4% (50/130) of the participants of the study. Patients with psoriasis and type D personality presented a higher risk of depression and anxiety. We observed that type D personality was associated with a lower educational level. These patients also presented a worse HRQOL in different dimensions of the Short Form Health Survey-36 questionnaire, more sleep problems, poor social adaptation, and a higher frequency of sexual disturbances. LIMITATIONS: Due to the cross-sectional design of the study, we could not confirm causality. Selection of sample was not random. Diagnoses of physical comorbidity were collected through clinical interview of patients under active treatment, which may imply a classification bias. CONCLUSION: Type D personality could represent a frequent personality profile in patients with psoriasis that could identify subjects with poor coping abilities to the disease with poorer levels of quality of life, increased psychological comorbidities, and inadequate social adaptation mechanisms.

Mulheres com hanseníase: interferências nos modos de viver / Women with leprosy: interferences in the ways of living

A hanseníase é uma doença milenar que carrega em seus acometidos, em especial nas mulheres, impactos importantes em seu cotidiano, em sua imagem e posição social. Os padrões de gênero socialmente impostos às mulheres vêm acompanhados de preconceitos que tomam novas proporções com a hanseníase, sendo causa de isolamento social, tristeza e depressão, trazendo reformulações nos modos de vida. O questionamento que norteia este trabalho é: Quais as interferências da hanseníase nos modos de viver de mulheres?. O objetivo foi analisar a interferência produzida pela hanseníase nos modos de viver de mulheres. Estudo de abordagem qualitativa, com quadro teórico metodológico com aproximações cartográficas e alguns conceitos da esquizoanálise, proposto por Gilles Deleuze e Félix Guattari. A produção de dados ocorreu por meio de entrevistas individuais e registros no diário de bordo da pesquisadora. Participaram do estudo nove mulheres, com idades entre 30 e 62 anos que no momento da pesquisa estavam em acompanhamento no serviço de saúde para tratamento de hanseníase. Os dados, em sua apresentação, foram baseados nas ideias relativas a diferença e repetição propostas pelos autores supracitados do referencial. Os resultados foram divididos em cinco eixos: 1. Hanseníase e Aparência das Mulheres: Encruzilhada entre a Pele, a Forma e o Feminino; acompanhamos inquietações referentes ao corpo feminino, o corpo alterado pela hanseníase e os efeitos sobre a aparência, que nos mostra que a relação com o corpo é uma construção social de um certo modo de ser mulher, de se apresentar ao outro e de se identificar tal como se espera. 2. Ganhar a Vida: um imperativo entre a Casa e o Trabalho; as participantes trouxeram angústias e preocupações com a remuneração para manutenção da vida. Foi observado também as situações de trabalho formal e informal. 3. Relações Familiares e as Mulheres com Hanseníase; são momentos que elas demonstram suas relações com filhos e marido, e como se dão as relações de poder dentro contexto doméstico. 4. Violência do Estado nas Práticas Profissionais; vimos situações em que o Estado é representado através de práticas profissionais, prejudicando direitos das mulheres. As mulheres relataram a perda de seus empregos, em função da doença, e a busca por auxílio. E por último, 5. Isolamento, Medo, Sofrimento, Fé: Enfrentamento da Hanseníase? as mulheres apresentaram algumas práticas que colocam para reflexão como elas têm enfrentado a hanseníase e a figura feminina isolada em seu próprio lar. Talvez a nossa pretensão fosse encontrar superação, força, potência nessas mulheres frente ao adoecimento. Mas mais que isso, com o referencial metodológico adotado pudemos mapear os encontros e afetos que evidenciaram dores e afetos tristes. A potência para agir se dá nos afetos, incluindo os tristes, não haveria força e potência sem o que as fizessem impulsionar. Apesar disso tudo, a vida dessas mulheres têm passado por reformulações e elas mesmas têm se reinventado a cada dia. Novas formas de viver foram criadas, seja amparada na fé, na família, na cura da hanseníase como marco para novos devires, e até mesmo a busca de força no devir-mulher

Leprosy is an age-old disease that has an important impact on its patients, especially on women, in their daily lives, in their appearance and social position. Gender standards socially imposed on women are accompanied by prejudices that take on new proportions with leprosy, causing social isolation, sadness and depression, imposing changes in the way of life. The objective and question that guides this work is: What are the interferences of leprosy in women's way of life? Thus, a qualitative approach study was made applying cartographic procedure and some concepts of schizoanalysis, proposed by Gilles Deleuze and Félix Guattari. Data production occurred through individual interviews and records in the researcher's logbook. Nine women participated in the study, aged between 30 and 62 years old who, at the time of the research, were being followed up at the health service for the treatment of leprosy. The data, in their presentation, were based on the ideas related to the difference and repetition proposed by the authors mentioned above. The results were divided into five axes: 1. Leprosy and the Appearance of Women: Crossroads between the Skin, the Form and the Feminine; we follow the concerns about the female body, its changes and effects because of the disease. Thus, it became evident that a woman's relationship with her body is a social construction, influencing the ways of presenting to others and comply with social expectations. 2. Earn a living: an imperative between Home and Work; the participants brought anguish and concerns about remuneration for life maintenance. Formal and informal work situations were also observed. 3. Family Relations and Women with Leprosy; moments when they demonstrate affection with their children and husband, and how power relationships take place within the domestic context. 4. State violence in professional practices; we saw situations in which the State is represented through professional practices, undermining women's rights. Women reported losing their jobs due to the disease and seeking help. Finally, 5. Isolation, Fear, Suffering, Faith: Facing Leprosy? Women presented some practices that pose for reflection how they have faced leprosy and the isolated female figure in their own home. Perhaps our intention was to find resilience, strength, power in these women in the face of illness. But more than that, with the methodological framework adopted we were able to map the factors and affections that showed pain and sadness. The power to act occurs in the affections, including the sad ones, there would be no strength and potency without what made them push. Despite all this, the lives of these women have been undergoing reformulation and they have reinvented themselves every day. New ways of living were created, whether supported by faith, family, the cure of leprosy as a framework for new "devires", and even the search for strength in "devir"-woman

Neglected tropical disease as a 'biographical disruption': Listening to the narratives of affected persons to develop integrated people centred care in Liberia.

BACKGROUND: Integrated disease management, disability and inclusion (DMDI) for NTDs is increasingly prioritised. There is limited evidence on the effectiveness of integrated DMDI from the perspective of affected individuals and how this varies by differing axes of inequality such as age, gender, and disability. We used narrative methods to consider how individuals' unique positions of power and privilege shaped their illness experience, to elucidate what practical and feasible steps could support integrated DMDI in Liberia and beyond. METHODS: We purposively selected 27 participants affected by the clinical manifestations of lymphatic filariasis, leprosy, Buruli Ulcer, and onchocerciasis from three counties in Liberia to take part in illness narrative interviews. Participants were selected to ensure maximum variation in age, gender and clinical manifestation. Narrative analysis was grounded within feminist intersectional theory. FINDINGS: For all participants, chronic illness, morbidity and disability associated with NTDs represented a key moment of 'biographical disruption' triggering the commencement of a restitution narrative. Complex health seeking pathways, aetiologies and medical syncretism meant that adoption of the 'sick role' was initially acceptable, but when the reality of permanency of condition was identified, a transition to periods of chaos and significant psycho-social difficulty occurred. An intersectional lens emphasises how biographical disruption is mediated by intersecting social processes. Gender, generation, and disability were all dominant axes of social inequity shaping experience. SIGNIFICANCE: This is one of the first studies to use narrative approaches to interrogate experience of chronic disabling conditions within LMICs and is the only study to apply such an analysis to NTDs. The emotive power of narrative should be utilised to influence the value base of policy makers to ensure that DMDI strategies respond holistically to the needs of the most marginalised, thus contributing to more equitable people-centred care.

Qualidade de vida de pessoas afetadas pela hanseníase inseridas em grupos de apoio ao autocuidado / Calidad de vida de personas con lepra que acuden a grupos de apoyo para el autocuidado / Quality of life of people affected by leprosy in self-care support groups

RESUMO Objetivo: analisar a qualidade de vida de pessoas afetadas pela hanseníase inseridas em grupos de apoio ao autocuidado. Método: estudo quantitativo, descritivo, com 43 participantes em unidades de referência que possuíam grupos de apoio ao autocuidado em hanseníase, em Recife e Região Metropolitana. A coleta de dados ocorreu entre janeiro e julho de 2018 com a aplicação do instrumento de avaliação de qualidade de vida WHOQOL-bref. A distribuição das variáveis numéricas contínuas foi analisada pelo teste de Kolmogorov-Smirnov, as categóricas foram apresentadas por frequência absoluta e relativa (%). Resultados: o escore global de qualidade de vida foi 56,4 e os escores dos domínios revelaram-se medianos, com faixas de 50-60. Verificou-se que os domínios com menores pontuações foram os domínios físicos e relações ambientais. Conclusão: pessoas afetadas pela hanseníase apresentam diminuição da qualidade de vida. Apesar de ter cura, é problema de saúde pública, necessitando de atenção para controle e eliminação.

RESUMEN: Objetivo: analizar la calidad de vida de personas con lepra que acuden a grupos de apoyo para el autocuidado. Método: estudio cuantitativo y descriptivo realizado con 43 participantes en unidades de referencia que poseían grupos de apoyo para el autocuidado de la lepra, en Recife y en su Región Metropolitana. Los datos se recolectaron entre enero y julio de 2018 con la aplicación del instrumento de evaluación de la calidad de vida llamado WHOQOL-bref. La distribución de las variables numéricas continuas se analizó con la prueba de Kolmogorov-Smirnov; las categóricas se presentaron por medio de frecuencias absolutas y relativas (%). Resultados: el puntaje global de la calidad de vida fue 56,4 y los de los dominios resultaron medianos, con un margen de50 a 60. Se verificó que los dominios con los puntajes más bajos fueron los dominios físico y de relaciones ambientales. Conclusión: las personas con lepra presentan una reducción en su calidad de vida. Pese a tener cura, es un problema de salud pública, que requiere atención para su control y eliminación.

ABSTRACT Objective: To analyze the quality of life of people affected by leprosy in self-care support groups. Method: A quantitative and descriptive study conducted with 43 participants in reference units with self-care support groups for people affected by leprosy in Recife and its Metropolitan Area. Data collection took place between January and July 2018 with the application of the WHOQOL-BREF instrument to assess quality of life. The distribution of the continuous numerical variables was analyzed by the Kolmogorov-Smirnov test; the categorical variables were presented by absolute and relative (%) frequency. Results: The overall quality of life score was 56.4 and the domain scores were average, ranging between 50 and 60. The domains with the lowest scores were found to be the physical and environmental relationship domains Conclusion: People affected by leprosy have a decreased quality of life. Although curable, it is a public health problem and requires attention for control and elimination.

Courtesy stigma: A concealed consternation among caregivers of people affected by leprosy.

This study explored experiences of courtesy stigma among caregivers of people affected by leprosy. Using a qualitative research approach, twenty participants were purposively selected and in-depth interviews conducted. The interviews were audio-recorded, transcribed, and analyzed to identify emerging themes that addressed objectives of the study. The findings indicated that caregivers of people affected by leprosy experienced courtesy stigma. Evidence showed that fear of contagion underpinned caregivers' experiences, especially in employment and romantic relationships. In addition, participants adopted different strategies (disregarding, concealment, education, faith-based trust) to handle courtesy stigma. The findings demonstrate that psychosocial support and financial assistance to caregivers are necessary considerations for attainment of effective care for people affected by leprosy.

Avaliação da limitação das atividades, participação social e estratégias de enfrentamento em idosos na hanseníase / Evaluation of the limitation of activities, social participation and strategies for counseling in elderly people in leprosy

O modo como os idosos enfrentam os obstáculos após o diagnóstico da hanseníase (comprometimento funcional, participação social na vida familiar, profissional e comunitária) pode direcionar o planejamento das ações de prevenção de incapacidades e do programa de reabilitação a qual o idoso está inserido, de acordo com as necessidades individuais. Portanto, o objetivo deste estudo consiste em avaliar a limitação na realização de atividades de vida diária (AVDs), participação social e as estratégias de enfrentamento em idosos afetados pela hanseníase. Fizeram parte desse estudo 70 idosos afetados pela doença, em acompanhamento no Instituto Lauro de Souza Lima, com idade igual ou superior a 60 anos. Foram utilizados cinco instrumentos de avaliação, a saber: Questionário com dados sociodemográficos e clínicos, Avaliação do grau de incapacidade (GI), SALSA, Escala de Participação Social e Inventário de Coping. Foi utilizada análise estatística descritiva para a caracterização da casuística. Houve um predomínio de pacientes do sexo masculino (67,14%), multibacilares (87,14%), com tempo de diagnóstico maior de 20 anos (42,85%), GI 2 (64,28%), idosos com alguma limitação nas AVDs (91,43%), sem restrição significativa (51,43%) e com restrições a participação social de leve à grave (48,57%). Quanto às estratégias de enfrentamento, as estratégias positivas mais utilizadas foram “reavaliação positiva” (70%), “resolução de problemas” (65,7%) e “suporte social” (65,7%), e, as negativas mais utilizadas foram “autocontrole” (67,2%) e “afastamento” (62,9%). Embora tenham predominado GI 2 , limitações na realização das AVDs e restrição participação social, houve predomínio de estratégias de enfrentamento positivas, o que poderia ser justificado pelo tempo de convivência e evolução da doença, durante o processo de ressignificação da doença e das limitações adquiridas. A identificação das estratégias de enfrentamento em idosos pode auxiliar na investigação de fatores psicológicos e sociais que interferem no seu cotidiano e, com isso, todos os profissionais da saúde poderão planejar ações mais eficazes de prevenção e reabilitação em hanseníase, de posse a esses conhecimentos

The way in which the elderly face obstacles after diagnosis of leprosy (functional impairment, social participation in family, professional and community life) can guide the planning of the disability prevention actions and the rehabilitation program to which the elderly are inserted, according to individual needs. There for, the objective of this study is to evaluate the limitation of daily living activities (ADLs), social participation and coping strategies in elderly people affected by leprosy. This study included 70 elderly people affected by the disease, who were followed up at the Lauro de Souza Lima Institute, aged 60 or over. Five evaluation instruments were used: questionnaire with sociodemographic and clinical data, assessment of the degree of incapacity (GI), SALSA, Social Participation Scale and Coping Inventory. Descriptive statistical analysis was used to characterize the sample. There was a predominance of male patients (67,14%), multibacillary patients (87,14%), diagnosed over 20 years (42,85%), GI 2 (64,28%), elderly patients with some limitation in ADLs (91,43%), without significant restriction (51.43%) and with restrictions on social participation from mild to severe (48,57%). As for coping strategies, the most commonly used positive strategies were "positive reassessment" (70%), "problem solving" (65,7%) and "social support" (65,7%), were "self-control" (67,2%) and "remoteness" (62,9%). Although GI 2 predominated, limitations in performing ADLs and social participation restriction, there was a predominance of positive coping strategies, which could be justified by the time of coexistence and evolution of the disease, during the process of re-signification of the disease and acquired limitations. The identification of coping strategies in the elderly can help in the investigation of psychological and social factors that interfere with their daily life, and with this, all health professionals can plan more effective actions of prevention and rehabilitation in leprosy, in possession of this knowledge

Vivência e sentimentos de mulheres portadoras de hanseníase / Experience and feelings of women with leprosy

Objetivo: conhecer a vivência e os sentimentos de mulheres com hanseníase. Método: estudo qualitativo, descritivo e exploratório, realizado com 15 mulheres. Os dados foram produzidos por meio de entrevista semiestruturada, com perguntas abertas e fechadas, e um roteiro com questões norteadoras. Os dados foram analisados pela técnica de Análise de Conteúdo. Resultados: cinco categorias foram definidas após o processo de análise: >, >, >, >, >. Conclusão: os resultados mostraram que a hanseníase deixa marcas profundas na vida das mulheres como medo, insegurança, exclusão social, necessitando, portanto, da assistência humanizada, por parte dos profissionais de saúde, e do apoio das pessoas do seu convívio, para o enfrentamento da doença.

Estar/ser no mundo com hanseníase: qual é o meu lugar? / To be/to exist in the world with leprosy: what is my place?

As pessoas vivendo com Hanseníase têm sua autoimagem maculada pelas lesões causadas pela doença, reações hansênicas e pela discriminação. Apesar de ser um problema antigo e de haver campanhas educativas para combatê-lo, o estigma está presente no cotidiano destas pessoas e desafia os profissionais que tem uma lacuna em seu saber no que concerne ao manejo do mesmo na sociedade e em seu fazer profissional. Este artigo objetiva refletir sobre o estigma e o cuidado da enfermagem a partir da fenomenologia ontológica de Martin Heidegger. O cuidado humanístico na perspectiva de ser-com-outro, de reconhecer o cuidado como ontológico e a negação do mesmo como desenraizante e desumanizante se coloca como alternativa para este enfrentamento e superação trazendo para a enfermagem o outro como parceiro na construção do cuidado, como um ser humano que vive aquele instante do encontro com o profissional em um ser-no-mundo repleto de significado e possibilidades.

People living with leprosy have their self-image blemished due to injuries caused by the disease, leprosy reactions and discrimination. Despite being an old problem and the existence of educational campaigns to combat it, the stigma is present in the daily lives of these people and is a challenge for professionals who lack knowledge regarding the management of the disease in society and in their professional work. This article aims to reflect on the stigma and nursing care from Martin Heidegger’s ontological phenomenology. Humanistic care from the perspective of being-with-others, of recognizing care as ontological and denying that it is rooted and dehumanizing is an alternative to face and overcome this condition. For the nursing staff, this brings the other as a partner in the construction of care, as a human being who lives that moment of meeting the professional in a being-in-the-world full of meaning and possibilities.

Estratégias de enfrentamento utilizadas pelo paciente com deficiências físicas na hanseníase / Coping strategies used by the patient with physical disabilities in leprosy

O conhecimento das estratégias de coping (enfrentamento) usado nessas condições auxilia o indivíduo a lidar com as limitações decorrentes da hanseníase. O objetivo deste estudo foi avaliar tais estratégias utilizadas pelos referidos pacientes, bem como verificar as dificuldades na realização das atividades de vida diária (AVDs) e das atividades instrumentais de vida diária (AIVDs). Trata-se de um estudo descritivo, com 30 pacientes com hanseníase avaliados no Instituto Lauro de Souza Lima/Bauru/SP. Foram utilizados na coleta de dados: um questionário sobre os dados sociodemográficos, aspectos clínicos da doença e a independência funcional na execução das AVDs e AIVDs; checklist relacionado ao tipo de deficiência física visível encontrada no paciente; e o Inventário de Estratégias de Coping de Folkman e Lazarus, adaptado para o português. A idade média dos pacientes foi de 55 anos. Houve predomínio dos pacientes do gênero masculino (60%), com Ensino Fundamental I (70%), residentes com as famílias (76,7%) e afastados do trabalho (90%). A maioria deles era multibacilar (96,7%) e o tratamento poliquimioterapia havia sido concluído (83,3%). As dificuldades funcionais mais frequentes (80%) nas AVDs foram: locomoverse, vestir­se, realizar transferência e higiene pessoal; e, nas AIVDs foram: administrar o ambiente doméstico, cuidar da casa e da roupa. O uso de estratégias positivas, como a resolução de problemas e suporte social está relacionado à boa adaptação biopsicossocial do indivíduo, considerando-se que a maioria não utilizava o confronto. Entretanto, uma parcela expressiva de pacientes utilizava as estratégias de autocontrole, fuga e esquiva.

The knowledge of the coping strategies used in these conditions helps the individual to deal with the limitations caused by leprosy. The aim of this study was to evaluate these strategies used by patients, weel with check the difficulties in to performe the daily living activities (DLA) and daily living instrumental activities (DLIA). This is a descriptive study with 30 patients with leprosy patients evaluated at Lauro de Souza Lima Institute/Bauru/SP. It was used to collect the data, a questionnaire about sociodemographic data, clinical aspects of the disease and the functional independence in the achievement of DLA and DLIA; a checklist related to the visible physical disability found in patients; an Inventory of Coping Strategies of Folkman and Lazarus, adapted to the Portuguese language. The middle age of patients was 55 years old. There was a predominance of male patients (60%), with Elementary school (70%), living with their families (76.7%) and off to the work (90%). Most of the patients were multibacillary (96.7%) and the multidrug therapy had been completed (83.3%). The most frequent functional difficulties in DLA (80%) were: getting yourself, put on clothes, to transfer and personal hygiene; and in DLIA were: manage the home environment, caring for the home and clothe. The use of positive strategies, such as problem solving and social support is related to a good biopsychosocial adaptation of the individual, considering that the most of the individual do did not use the confrontation. However, a significant portion of patients used the self-control strategies, escape and avoidance.

[Immune granulomatous inflammation as the body's adaptive response].

Based on their studies and literature analysis, the authors offer a hypothesis for the adaptive pattern of chronic immune granulomatous inflammation occurring in infectious diseases that are characterized by the development of non-sterile immunity. The authors' proposed hypothesis holds that not every chronic inflammation is a manifestation of failing defenses of the body exposed to a damaging factor. By using tuberculosis and leprosy as an example, the authors show the insolvency of a number of existing notions of the pathogenesis and morphogenesis of epithelioid-cell and leprous granulomas. Thus, the authors consider that resident macrophages in tuberculosis maintain their function to kill mycobacteria; thereby the immune system obtains information on the antigenic determinants of the causative agents. At the same time, by consuming all hydrolases to kill mycobacteria, the macrophage fails to elaborate new lysosomes for the capacity of the pathogens to prevent them from forming. As a result, the lysosome-depleted macrophage transforms into an epithelioid cell that, maintaining phagocytic functions, loses its ability to kill the causative agents. It is this epithelioid cell where endocytobiosis takes place. These microorganisms destroy the epithelioid cell and fall out in the area of caseating granuloma necrosis at regular intervals. Some of them phagocytize epithelioid cells to maintain non-sterile immunity; the others are killed by inflammatory macrophages. The pathogenesis and morphogenesis of leprous granuloma, its tuberculous type in particular, proceed in a fundamentally similar way. Thus, non-sterile immunity required for tuberculosis, leprosy, and, possibly, other mycobacterioses is maintained.

Impacto do diagnóstico da hanseniase / Impact of the diagnosis of leprosy / Impacto del diagnóstico de la lepra

Objetivo: identificar o impacto do diagnóstico da Hanseníase. Método: trata-se de um estudo exploratório, descritivo com abordagem qualitativa. A coleta de dados foi realizada em Unidade de Saúde do Distrito Sanitário IV, situada no município de Recife–PE, após aprovação do projeto de pesquisa pelo Comitê de Ética em Pesquisa do Hospital Agamenon Magalhães sob número de protocolo 21. A amostra foi composta por treze clientes do Sistema Único de Saúde (SUS) que atenderam aos critérios desta pesquisa. Os dados foram analisados por categorização temática. Resultados: oito foram do sexo masculino e cinco do feminino; as categorias que emergiram após a análise das informações foram: conhecimento dos usuários quanto à Hanseníase; mudanças ocorridas na vida após o diagnóstico de Hanseníase; enfrentamento das mudanças ocorridas; preconceito sofrido pelos clientes; sugestões para melhoria da qualidade de vida dos portadores de Hanseníase;mensagem para os portadores. Conclusão: as mudanças citadas pelos clientes estavam relacionadas às limitações causadas pela doença, isto é, resultantes das incapacidades físicas e neurológicas identificadas em casos que não tiveram o diagnóstico precoce. O preconceito relacionado ao diagnóstico da Hanseníase não é inerente apenas à sociedade, mas também ao próprio portador.(AU)

Objective: to identify the diagnostic impact of leprosy. Method: this is a descriptive exploratory study with a qualitative approach. The data collection was carried out in a Health Unit from the Sanitary District IV, located in the city of Recife, Pernambuco, Brazil, after the approval by the Research Ethics Committee of Hospital Agamenon Magalhães, under the Protocol 21. The sample consisted of thirteen clients of the Brazilian Unique Health System (SUS) who met the criteria of this research. The data were analyzed through thematic categorization. Results: eight participants were male and five female; the categories which emerged after the information analysis were: knowledge of users on leprosy; changes which happened in life after the diagnosis of leprosy; coping with the changes that happened; prejudice suffered by the clients; suggestions for improving the quality of life of patients with leprosy; message to the patients with leprosy. Conclusion: the changes reported by the clients were related to the limitations due to the pathology, i.e., arising from the physical and neurological disabilities identified in cases without early diagnosis. The prejudice related to the diagnosis of leprosy is not inherent only to the society, but also to the patient with leprosy her/himself.(AU)

Objetivo: identificar el impacto diagnóstico de la lepra. Método: esto es un estudio exploratorio descriptivo con abordaje cualitativo. La recogida de datos fue realizada en una Unidad de Salud del Distrito Sanitario IV, situada en la ciudad de Recife, Pernambuco, Brasil, después de la aprobación del Comité de Ética en Investigación del Hospital Agamenon Magalhães, bajo el Protocolo 21. La muestra consistió en trece clientes del Sistema Único de Salud (SUS) brasileño que atendieron los criterios de esta investigación. Los datos fueron analizados por categorización temática. Resultados: ocho participantes eran del sexo masculino e cinco del femenino; las categorías que surgieron después del análisis de las informaciones fueron: conocimiento de los usuarios con relación a la lepra; cambios ocurridos en la vida después del diagnóstico de lepra; enfrentamiento de los cambios ocurridos; prejuicio sufrido por los clientes; sugestiones para mejoría de la calidad de vida de los portadores de lepra; mensaje para los portadores. Conclusão: los cambios citados por los clientes estaban relacionados a las limitaciones causadas por la patología, esto es, resultantes de las incapacidades físicas y neurológicas identificadas en casos que no tuvieron el diagnóstico precoz. El prejuicio relacionado al diagnóstico de la lepra no es inherente sólo a la sociedad, pero también al própio portador.(AU)

The grief account: dimensions of a contemporary bereavement genre.

The genre of the grief account is identified to include published narratives of surviving grief. Thematic analysis of Andrew Holleran's (2006) Grief: A Novel, Lolly Winston's (2004) Good Grief: A Novel, Joan Didion's (2005) The Year of Magical Thinking, and J. Canfield and M. V. Hansen's (2003) Chicken Soup for the Grieving Soul: Stories About Life, Death and Overcoming the Loss of a Loved One is informed by recent scholarship regarding eulogies and illness and dying narratives. Six dimensions (restorative, evaluative, interpretive, affirmative, affective, transformative) of contemporary grief accounts are recognized as sources of inspiration for the practice and experience of bereavement.