"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.

Evaluation of the Bifactor Nominal Response Model Analysis of a Health Efficacy Measure.

The bifactor nominal response item response theory (IRT) model, proposed by Cai, Yang and Hansen (2011), provides an extension of Bock's (1972, 1997) unidimensional nominal response model to multidimensional IRT. This model has not been utilized in any published studies since its original development. In this study, the model was applied to data from a sample of college students (N = 799) to evaluate the psychometric properties of a health efficacy measure. The nominal response model has the unique capability to estimate the functioning of each single response category, and higher response categories were found to have better functioning in this study. Poor-functioning categories were identified and combined into their adjacent categories. Items with revised response format showed improved functioning. The bifactor nominal response model is a useful tool for evaluation of bifactor scales with ordered while non-equivalently functioning categories.

Health beliefs surrounding leprosy induced foot ulceration; an exploratory qualitative study from South Nepal.

UNLABELLED: Leprosy is a complex and multi-faceted disease responsible for significant disability in several endemic countries. Physical impairments caused by leprosy are often amplified by local sociocultural phenomena in many parts of the world. In Nepal, sociocultural phenomena such as stigmatisation and health beliefs affecting treatment compliance and health seeking behaviours are known to play an important role in the acquisition of disability. Foot-ulceration is reported to be a common sequelae of leprosy, however, presently little research has been published investigating the potential influence of patient beliefs on management of foot ulceration in leprosy affected persons. OBJECTIVE: In light of this we conducted an exploratory qualitative study to investigate the health beliefs held by patients with foot ulceration at a Leprosy hospital in Nepal. METHODS: A mixture of open-ended interviews (n = 21), three focus groups and a series of field observations were used to explore the explanatory models of foot ulceration thought to be used by leprosy affected people to understand and explain this specific comorbidity. RESULTS: Our findings indicated that a wide range of health beliefs were present in our sample, many of which lie outside of the biomedical understanding of illness. This included a range of non-biomedical beliefs regarding wounds and widespread application of the traditional 'hot-cold' model of illness used to explain foot ulceration. DISCUSSION: The findings of this study appear to suggest many beliefs held by leprosy affected persons concerning foot ulceration are highly complex, with some expressed beliefs potentially having a negative impact on self-management of ulceration.

Sun-related behaviors among individuals previously diagnosed with non-melanoma skin cancer.

Compared to the general population, the risk of developing non-melanoma skin cancer is considerably higher among individuals with a previous history of this condition. Protection from ultraviolet (UV) radiation is the primary evidence-based approach for minimizing this risk. This review was aimed to assess the prevalence of sun-safe behaviors in non-melanoma skin cancer survivors. Searches were conducted in six electronic databases including PubMed, Psyclnfo, CINAHL, EMBASE, ERIC and Science Direct. A narrative approach was adopted to synthesize the data. The findings demonstrated that respondents do not protect themselves optimally from UV radiation exposure. Low levels of perceived skin cancer risk, a lack of knowledge about effective sun protection strategies and the inconvenience associated with sun-safe behaviors appear to explain this finding. A note of caution is required here, as there is a potential for publication bias. Moreover, the results of this study cannot be generalized to all non-melanoma skin cancer patients. Skin cancer survivors must be educated about their increased risk of future skin cancers. Behavioral interventions must be developed to increase the adoption of skin protective behaviors in this high-risk population group.

Leprosy and its dental management guidelines.

OBJECTIVES: Leprosy is a chronic, non-fatal disease caused by Mycobacterium leprae. It can cause cutaneous lesions, peripheral nerve lesions and orofacial manifestations, including destruction of the alveolar premaxillary process associated with loss of the maxillary incisors. The aims of this study were to assess orofacial manifestations of disease in patients attending the Bombay Leprosy Project clinics and develop clinical guidelines for dentists. MATERIALS AND METHODS: A cross-sectional questionnaire based study was administered to 43 diagnosed leprosy patients. This included questions on perceived oral health status and oral hygiene habits. An extra-oral and intra-oral examination was also performed. RESULTS: Eighty-four per cent of patients were male with a mean age of 35.9 years. Forty-nine per cent had extra-oral cutaneous lesions. Twenty-eight per cent had intra-oral lesions including hyperpigmented patches. Twenty-one per cent had cranial nerve involvement and the trigeminal nerve was most commonly affected. CONCLUSIONS: From this data a clinical dental pathway protocol for managing patients with leprosy was developed. It highlights dental issues when managing leprosy patients. Nerve involvement may mean patients are unable to give an accurate account of their symptoms. Special tests should include cranial nerve examination and swabs of intra-oral ulcers. Low rates of infectivity means that normal infection control measures can be taken when treating these patients.

Perceptions, health seeking behaviour and access to diagnosis and treatment initiation among previously undetected leprosy cases in rural Maharashtra, India.

OBJECTIVES: To study sociodemographic profiles, perceptions about leprosy and health seeking patterns among adult leprosy patients and parents of children with leprosy detected through a prevalence survey conducted earlier, in rural areas of Panvel tehsil in Maharashtra. METHODS: The study was cross-sectional and used mixed (qualitative and quantitative) methods. Of the 97 confirmed rural leprosy cases who had been detected through the initial prevalence survey, 58 newly detected adult leprosy cases and parents of 22 children detected with leprosy were interviewed with a semistructured interview schedule between May 2008 and March 2009. FINDINGS: The study revealed that most of the leprosy patients belonged to the poor socioeconomic strata. Nearly 58% of the adult patients reported that they had been detected through the survey within 3 months of noticing their symptom(s) for the first time. Despite having been diagnosed and receiving treatment, only 48% of adult cases knew their condition as leprosy, reflecting their poor knowledge of the disease and lack of communication between providers and patients. The symptom 'patch on the skin' seems to have percolated in the community. Despite approaching the private or public sector for help in the first instance, many patients and children remained undiagnosed and untreated for leprosy. CONCLUSION: Active surveys for leprosy case detection should substitute the self-reporting approach until IEC measures are sufficiently effective to achieve a significant impact on transmission. Nevertheless both approaches will need the presence of staff with active diagnostic skills and optimal drug availability at PHCs.

Healthcare seeking behaviour and delay in diagnosis of leprosy in a low endemic area of China.

Delay in diagnosis of leprosy can increase the risk of nerve function impairments and promote the transmission of the infection in a community. In order to understand the factors associated with the delays in diagnosis of leprosy, a questionnaire-based interview was conducted to collect information on the delays among 88 newly diagnosed leprosy patients. The results showed that delay was common and associated with the high rate of disability in the study population. The total mean delay was 50.18 months (median 36 months). The mean patient delay was 24-4 months (median 9.5 months) and the mean health service delay was 257 months (median 12 months). Patients with leprosy reported a variety of symptoms/signs at an early stage of the disease, particularly numbness and tingling. Ignorance of the illness was reported to be the main reason for the patient's delay. Health seeking actions ranged from 1 to 50 with a mean of 7.2 after becoming aware of the first symptom/sign. The effectiveness of early diagnosis of leprosy through health promotion in the population needs to be validated and continuous training on leprosy among healthcare providers is needed.

Relationship of skin ulcers and physical deformity with employment status and compliance with health promotion in leprosy.

OBJECTIVE: To determine if recurrence of ulcers and physical deformity in leprosy is associated with employment status and compliance with health promotion advice. METHODS: Between April-August 1992, a cohort of 55 consecutive leprosy patients admitted with skin ulcers were studied for ulcer recurrence, physical deformity (taking into account neuromuscular and skeletal damage), employment status, compliance with health promotion advice and knowledge of the disease. RESULTS: High grade physical deformity was present in 34/55 (62%) patients while recurrent ulceration occurred in 40/55 (75%) patients. With regard to employment status, the odds of high grade physical deformity were significantly higher for street traders and unemployed compared to semiskilled and skilled workers (odds ratio 4.2, 95% confidence interval 1.01-19.8, p = 0.03). There was a trend of higher odds of recurrence of ulcers for street traders and unemployed compared to semiskilled and skilled workers (odds ratio 2.3, 95% confidence interval 0.5-9.4, p = 0.2). With regard to health promotion, there was poor compliance with advice about protective footwear and care of insensitive extremities. Level of knowledge about the disease and its prevention was also inadequate. CONCLUSION: Physical deformity was associated with lack of reasonable employment among leprosy patients. There was poor compliance with preventative advice. Health promotion strategies should be directed toward targeted health education and prevention of physical deformities.

Saúde: um processo em constante construção: um estudo sobre o imaginário e as representações sociais da concepção de saúde entre crianças de 7 a 12 anos de idade / Health: a process in constant construction: a study about the imaginary and the social representations of the conception of health among children from 7 to 12 years of age

O presente trabalho discute o processo de Construção Social da Saúde partindo da compreensão do Imaginário vertido nas Representações Sociais sobre saúde, doença e corpo que crianças entre 7 e 12 anos, frequentando Escola Pública de 1º grau na cidade de Marília/SP constroem, de acordo com suas capacidades perceptivas e o meio ambiente que as cerca. É considerado aqui o caráter emergencial atribuído à saúde, o que é refletido nas medidas adotadas pelas Políticas públicas para a Educação e a Saúde. Tendo a medicina focado como seu objeto de atenção a doença, em não se podendo preveni-la, somos forçados a tratá-la.Tal condição incentiva a população a considerar doença como referencial de saúde. Ainda, considera-se que diante da importância atribuída à saúde da criança, esta tem sido tomada como base ideológica para diversas posturas políticas. São avaliados neste trabalho, principalmente os efeitos produzidos pela realização de Oficinas de Territorialização em Saúde no Bairro de Nova Marília, uma iniciativa do Projeto UNI/Faculdade de Medicina - há cinco anos , o que é focalizado, extensivamente, através da enunciação sobre saúde construída pelas crianças participantes deste universo amostral. A presente pesquisa visa, portanto, avaliar a maneira pela qual crianças na faixa entre 7 e 12 anos de idade concebem saúde segundo suas próprias idades e seus mecanismos perceptivos. Para tanto, é levado em consideração, o aprendizado adquirido através dos programas de Educação para a Saúde existentes nas escolas e nos serviços públicos de saúde. A metodologia adotada é a da pesquisa qualitativa, sob a qual, as crianças são submetidas a entrevistas e os dados são registrados através de filmagem em vídeo, com a finalidade de apreender as manifestações corpóreas e o teor dos discursos sobre saúde narradas por elas. A técnica de filmagem busca pela avaliação manifestações corpóreas das crianças expressadas diante da indagação, inusitada ou não, sobre concepção de saúde...

O discurso-saúde em hanseníase, sob o prisma da teoria estética da recepçao / ?

Através do prisma da Estética da Recepçao, procura-se elucidar o percurso gerativo do sentido das mensagens relacionadas ao evento hanseníase, expresso nas condiçoes de produto dos conceitos lepra/hanseníase regidas pela evoluçao histórico-social do homem, suas reaçoes frente à doença e suas consequências para o doente e para a sociedade. Pelos conceitos em discussao busca-se situar o paciente nas diferentes formas de abordagem da problemática de controle e erradicaçao da enfermidade, adotadas pelos sistemas sociais e de saúde vigentes em cada época e em conformidade com os conhecimentos próprios destes períodos. Menciona-de intervençoes de diferentes profissionais, bem como suas contribuiçoes ao encaminhamento do indivíduo para cura e reitegraçao social