Vozes, olhares e sentidos da Participação Social no SUS / Voices, looks and senses of Social Participation in the SUS

Olhando para a trajetória histórica compreende-se melhor a relação entre "Democracia e Saúde" estabelecida para 16ª Conferência Nacional de Saúde realizada em 2019, pois a luta pelo direito à saúde e a implementação do SUS está vinculada a busca pela redemocratização e a ampliação dos direitos sociais no Brasil. As instâncias do controle social se consolidaram no decorrer das três décadas de sua existência, os movimentos sociais, bem como, as mais diversas organizações da sociedade civil, ocuparam estes espaços e buscaram transformá-los numa arena democrática de defesa da sua concepção de saúde, de política pública, de Estado, de desenvolvimento e de direitos humanos.

Social participation restriction among persons with leprosy discharged from a multidrug therapy clinic in northern Nigeria.

BACKGROUND: The burden of leprosy-related disability, stigma and social participation after completing treatment is not well documented in Nigeria. We assessed the extent of disability, level of stigma and predictors of activity limitation and social participation restriction after completing multidrug therapy (MDT) for leprosy in Kano, Nigeria. METHODS: A consecutively recruited cross-section of 354 persons discharged from MDT and 360 community members were interviewed. The Eyes, Hands and Feet sum score, Screening of Activity Limitation and Safety Awareness scale, Participation scale and Jacoby Stigma scale were used for affected persons. The Exploratory Model Interview Catalogue scale was used to assess community-perceived stigma. Levels of disability, activity limitation, participation restriction and stigma were scored. Adjusted ORs for predictors were generated from logistic regression models. RESULTS: Most (91.5%, n=324) respondents had a disability; (8.2%, n=29) and (83.3%, n=295) were WHO grades 1 and 2, respectively. Similarly, 321 participants (90.7%) had activity limitation and 316 respondents (89.3%) experienced participation restriction. Further, 88.7% of participants (n=314) anticipated stigma. Activity limitation was higher among unemployed participants, men, persons with disability and those who anticipated stigma. Participation restriction was higher among low income earners (≤1000 Nigerian Naira per month (equivalent to US$2.50 per month)) and persons with disability, limited activity and anticipated stigma. CONCLUSION: Leprosy-related disability, stigma, activity limitation and social participation restriction are high after treatment. We recommend community-based rehabilitation to sustain self-care, reduce stigma and ensure social inclusion.

Quando a conferência de saúde ensina para o trabalho e para a vida: narrativas dos estudantes sobre a 16ª Conferência Nacional de Saúde / When the health conference teaches for work and for life: student narratives about the 16th National Health Conference

Em um contexto de retrocessos políticos, sociais, sanitários e civilizatórios, deparamo-nos com a 16ª Conferência Nacional de Saúde, carinhosamente apelidada de 8ª + 8, para tornar visível o encontro com a conferência-marco da reforma sanitária brasileira. Durante a conferência foi realizada a pesquisa "Saúde e democracia: estudos integrados sobre participação social na 16ª Conferência Nacional de Saúde", cujo objetivo foi analisar a participação social no processo da 16ª Conferência Nacional de Saúde em dimensões que permitissem sistematizar evidências da relevância e da abrangência do processo participativo nas etapas e atividades que a compuseram. A partir das experiências vivenciadas pelos estudantes pesquisadores, afetivamente reconhecidos como "verdinhos e verdinhas", em alusão à camiseta de cor verde que os identificava entre os participantes da 16ª CNS, elaborou-se a chamada de manuscritos que culminou neste livro. Encontram-se aqui reunidos aproximadamente 30 narrativas, somadas a alguns manuscritos feitos sob demanda dos organizadores. Agradecemos a cada uma das pessoas que ofereceu sua narrativa, a cada esforço necessário para compor uma estética capaz de dizer do lugar de aprendizagem que cada um e cada uma das pessoas que estiveram conosco nesse grande laboratório de democracia e cidadania que foi a 16ª Conferência Nacional de Saúde. E a cada leitor e leitora que, sensivelmente, compreender que cada um dos textos é um convite para a defesa do SUS, do ensino da saúde pautado pelo compromisso ético com todas as saúdes dos territórios e com o SUS como política pública.

Grupo de autocuidado em hanseníase: benefícios na participação e resistências na adesão / Self-care group in leprosy: benefits from participation and resistances to adherence

Objetivos: Descrever a limitação de atividades e a participação social de indivíduos com hanseníase antes e após participação em grupo de autocuidado, analisar os benefícios do grupo e a não adesão. Métodos: Trata-se de uma pesquisa descritiva e exploratória com abordagem quanti-qualitativa com 18 pacientes em tratamento para hanseníase, atendidos e acompanhados em um centro de saúde em Palmas ­ Tocantins. Os dados foram coletados no período de março a dezembro de 2018 por meio de um Questionário de Identificação, da escala Screening of Activity Limitation and Safety Awareness (SALSA) e Participação Social, e Entrevista Semiestruturada. Os dados foram analisados pelo programa Statistical Package For Social Sciences (SPSS) e as entrevistas por meio de Análise de Conteúdo pela técnica análise categorial. Resultados: Embora a adesão ao grupo de autocuidado tenha sido baixa, a participação no mesmo contribuiu para redução dos escores das escalas Salsa e Participação Social e proporcionou aos pacientes conhecimento sobre a doença, troca de saberes, socialização, criação de vínculo, melhora da autonomia, do autocuidado e dos fatores emocionais. Conclusão: A limitação de atividades e a participação social dos pacientes podem ser prejudicadas pela hanseníase, entretanto, o grupo de autocuidado auxilia o paciente a lidar melhor com a doença.

Objectives: To describe the limitation of activities and social participation of individuals with leprosy before and after joining a self-care group, to analyze the benefits of the group and non-adherence. Methods: Descriptive and exploratory research with quantitative-qualitative approach with 18 patients undergoing treatment for leprosy, attended and followed up at a health center in Palmas - Tocantins. Data were collected from March to December 2018 through the Identification Questionnaire, SALSA Scales and Social Participation, and Semi- structured Interview. The data were analyzed by the Statistical Package for Social Sciences (SPSS) Program and the interviews were conducted through Content Analysis by the categorical analysis technique. Results: Although adherence to the self-care group was low, the participation in it contributed to a reduction in the scores of the Salsa and Social Participation scales and provided patients with knowledge about the disease, knowledge exchange, socialization, improvement of autonomy, self-care and emotional factors. Conclusion: Patient's limitation of activities and social participation may be impaired by leprosy, however, the self-care group helps them to better deal with the disease.

Activity limitation and social participation restriction among leprosy patients in Boru Meda Hospital, Amhara Region, Ethiopia.

BACKGROUND: Although Ethiopia eliminated leprosy as public health problem 20 years ago, still more than 3000 new cases are reported annually. Leprosy related disability affects patients' day to day physical activities and their participation in social activities. Assessing the degree of activity limitation and social participation is recommended to show disability and assess the efficacy of rehabilitation efforts. METHODOLOGY AND PRINCIPAL FINDING: A hospital based cross sectional study was conducted among a total of 305 leprosy patients. Data were collected by face to face interview using Screening of Activity Limitation and Safety Awareness (SALSA) scale and participation scale. The analysis was done with SPSS version 25. Descriptive statistics was done and then binary logistic regression was used to identify factors associated with activity limitation as well as participation limitation. Most patients (219, 71.8%) had activity limitation; 41 (13.4%) with severe and 25 (8.2%) with extreme limitations. More than half of patients (168, 55.1%) were suffering from participation restriction; with 43 (14.1%) having severe restriction and 30 (9.8%) extreme restriction. Older age, low educational status, distance from treatment center, time of treatment and higher Eye, Hand, Foot disability score were associated with activity limitation. Similarly, older age, low educational status and being unmarried were significantly associated with participation restriction. CONCLUSION: This study revealed that activity limitation and participation restriction are common among leprosy patients. Earlier diagnosis and improved rehabilitative services may help to decrease activity limitation, whereas community rehabilitation may improve social participation. The old and centralized leprosy rehabilitation services need to be decentralized and backed with modern equipment and trained staffs.

Activity limitation and social participation restriction of people with leprosy: a cross-sectional analysis of magnitude and associated factors in a hyperendemic municipality in the state of Piauí, Brazil, 2001-2014. / Limitação de atividade e restrição à participação social em pessoas com hanseníase: análise transversal da magnitude e fatores associados em município hiperendêmico do Piauí, 2001 a 2014.

Objective to analyse the magnitude and factors associated with activity limitation and social participation restriction of people with leprosy from 2001 to 2014 in Picos, Piauí, Brazil. Methods this was a cross-sectional study with data collected through interviews and physical examinations; the SALSA Scale (Screening of Activity Limitation and Safety Awareness) and Social Participation Scale were used; crude prevalence ratios (PR) were calculated. Results 263 people with leprosy participated in the study; activity limitation was associated with grade I/II disability (PR=1.66; 95%CI 1.14;2.41), age ≥60 years (PR=1.68; 95%CI 1.09;3.02) and low schooling (PR=1.76; 95%CI 1.26;2.45); correlation was found between eye-hand-foot score and activity limitation (r=0.29; p<0.001) and participation restriction (r=0.27; p<0.001). Conclusion activity limitation and participation restriction had high prevalence in the context studied and were associated with disease severity, advanced age and social vulnerability.

Scoping review: Community-based programmes with people affected by leprosy.

OBJECTIVE: To analyse community intervention programmes for people affected by leprosy in 'global priority countries'. METHODS: Scoping review of articles in the databases PubMed, Scopus, SciELO, Lilacs and Web of Knowledge that made reference to community intervention programmes aimed at people affected by leprosy in global priority countries and which presented an evaluation of results. Analytical variables analysed were methodological characteristics of the study, type of intervention classified according to the Community-Based Rehabilitation Matrix, indicators and results of the evaluation, and the degree of participation of the community, which was graphically represented as a spidergram. RESULTS: Thirty articles met the inclusion criteria. They were mostly related to the health component of the RBC matrix and aimed at the adult population. All evaluated the indicators used positively. The degree of participation generally ranged between mobilisation and collaboration. CONCLUSION: Community intervention programmes for people affected by leprosy have a positive effect on health. There are attempts to include affected people and the community in implementing these programmes, but it is not possible to establish a direct relationship with effects of their participation on health due to the study designs used. Future research using more robust methods that include leprosy patients are necessary to evaluate the effectiveness of community participation.

OBJECTIF: Analyser les programmes d'intervention communautaire pour les personnes atteintes de la lèpre dans les "pays à priorité mondiale". MÉTHODES: Analyse de la portée à partir d'articles dans les bases de données Pubmed, Scopus, Scielo, Lilacs et Web of Knowledge qui faisaient référence aux programmes d'intervention communautaire destinés aux personnes touchées par la lèpre dans les pays à priorité mondiale et qui présentaient une évaluation des résultats. Les variables analytiques analysées étaient les caractéristiques méthodologiques de l'étude, le type d'intervention classé selon la Matrice de Réhabilitation Communautaire, les indicateurs et les résultats de l'évaluation, et le degré de participation de la communauté, qui était représenté graphiquement comme un spidergram. RÉSULTATS: Trente articles répondaient aux critères d'inclusion. Ils étaient principalement liés à la composante santé de la matrice RBC et visaient la population adulte. Tous ont évalué positivement les indicateurs utilisés. Le degré de participation relevait généralement entre la mobilisation et la collaboration. CONCLUSION: Les programmes d'intervention communautaire pour les personnes atteintes de la lèpre ont un effet positif sur la santé. Il y a des tentatives d'inclure les personnes affectées et la communauté dans la mise en œuvre de ces programmes, mais il n'est pas possible d'établir une relation directe avec les effets de leur participation sur la santé en raison des concepts d'étude utilisés. De futures recherches utilisant des méthodes plus robustes incluant des patients lépreux sont nécessaires pour évaluer l'efficacité de la participation communautaire.

Limitação de atividade e restrição à participação social em pessoas com hanseníase: análise transversal da magnitude e fatores associados em município hiperendêmico do Piauí, 2001 a 2014 / Limitación de la actividad y restricción de la participatión social en personas con lepra: análisis transversal de la magnitud y factores asociados en un municipio hiperendémico de Piauí, 2001 a 2014 / Activity limitation and social participation restriction of people with leprosy: a cross-sectional analysis of magnitude and associated factors in a hyperendemic municipality in the state of Piauí, Brazil, 2001-2014

Objetivo: analisar a magnitude e os fatores associados à limitação de atividade e restrição à participação social em pessoas com hanseníase de 2001 a 2014, em Picos, Piauí. Métodos: estudo transversal com dados coletados por meio de entrevistas e exames físicos; foram utilizadas as escalas SALSA (Screening of Activity Limitation and Safety Awareness) e de participação social; calcularam-se razões de prevalência (RP) brutas. Resultados: participaram do estudo 263 pessoas com hanseníase; a limitação de atividade foi associada com grau de incapacidade I/II (RP=1,66; IC95% 1,14;2,41), idade ≥60 anos (RP=1,68; IC95% 1,09;3,02) e baixa escolaridade (RP=1,76; IC95% 1,26;2,45); observou-se correlação entre escore olho-mão-pé e limitação de atividade (r=0,29; p<0,001) e restrição à participação (r=0,27; p<0,001). Conclusão a limitação de atividade e a restrição à participação apresentaram alta prevalência no contexto estudado, e foram associadas a gravidade da doença, idade avançada e vulnerabilidade social.

Objetivo: analizar la magnitud y factores asociados con la limitación de actividad y restricción de la participación social en personas con lepra entre 2001 a 2014 en Picos/PI. Métodos: Estudio transversal con dados recopilados en entrevistas y exámenes físicos. Se utilizaron las escalas SALSA (Screening of Activity Limitation and Safety Awareness) y de participación social. Se calcularon las razones de prevalencia bruta (RP). Resultados: 263 personas con lepra participaron en el estudio. La limitación de actividad se asoció con el grado de discapacidad I/II (RP=1,66; IC95% 1,14;2,41), edad ≥ 60 años (RP= 1,68; IC95% 1,09;3,02) y baja escolaridad (RP=1,76; IC95% 1,26;2,45). Hubo una correlación entre la puntuación ojo-mano-pie y la limitación de actividad (r=0,29; p<0,001) y la restricción de participación (r=0,27; p<0,001). Conclusión: la limitación de la actividad y la restricción de participación mostraron una alta prevalencia en el contexto estudiado y se asociaron con la gravedad, la vejez y la vulnerabilidad social.

Objective: to analyse the magnitude and factors associated with activity limitation and social participation restriction of people with leprosy from 2001 to 2014 in Picos, Piauí, Brazil. Methods: this was a cross-sectional study with data collected through interviews and physical examinations; the SALSA Scale (Screening of Activity Limitation and Safety Awareness) and Social Participation Scale were used; crude prevalence ratios (PR) were calculated. Results: 263 people with leprosy participated in the study; activity limitation was associated with grade I/II disability (PR=1.66; 95%CI 1.14;2.41), age ≥60 years (PR=1.68; 95%CI 1.09;3.02) and low schooling (PR=1.76; 95%CI 1.26;2.45); correlation was found between eye-hand-foot score and activity limitation (r=0.29; p<0.001) and participation restriction (r=0.27; p<0.001). Conclusion: activity limitation and participation restriction had high prevalence in the context studied and were associated with disease severity, advanced age and social vulnerability.

15a Conferência Nacional de Saúde: um estudo de caso / 15th National Health Conference: a case study

Resumo O objetivo deste artigo é analisar a participação do Conselho Nacional na construção e realização da 15ª Conferência Nacional de Saúde (CNS), bem como os principais componentes desse evento, o desenho institucional, no que se refere a sua dinâmica participativa, e as propostas e diretrizes aprovadas, e relacionar esse fenômeno político à conjuntura brasileira. Este estudo de caso sobre a 15ª CNS teve como fonte de produção de dados entrevistas com 27 conselheiros nacionais e a revisão documental de atas, notícias e outras fontes do Conselho relacionadas à 15ª Conferência. O Conselho Nacional desenvolveu estratégias para politizar a elaboração das diretrizes e intensificou a participação da sociedade por meio das conferências livres. O debate em torno da saúde em 2015 envolveu milhares de pessoas no país - afinal, foram realizadas 4.706 conferências municipais, 26 estaduais, a conferência distrital e a nacional. As principais pautas da 15ª Conferência foram a defesa da democracia e o financiamento público da saúde. A 15ª CNS ainda prevaleceu com o formato burocrático. Além das inovações na forma das conferências, é necessário ampliar a permeabilidade dos tomadores de decisão à participação social e democratizar o processo de planejamento e a gestão em saúde.

Abstract This article aims to analyze the participation of the National Council in the construction and realization of the 15th National Health Conference (CNS), as well as the main components of this event, the institutional design regarding its participatory dynamics, and the approved proposals and guidelines, relating this political phenomenon to the Brazilian context. This case study on the 15th CNS had, as data sources, the interviews with 27 national counselors and the documentary review of minutes, news and other sources of the Council related to the 15th Conference. The National Council developed strategies to politicize the elaboration of guidelines and intensified society participation through free conferences. The Health debate in 2015 involved thousands of people in the country - after all, 4,706 municipal and 26 state, district and national conferences were held. The main agendas of the 15th Conference were the defense of democracy and the public financing of health. Nonetheless, the bureaucratic format still prevailed in the 15th CNS. In addition to innovations in the form of conferences, one must increase the permeability of decision-makers to social participation and democratize the health planning and management process.

Desenvolvimento das ações de um grupo de autocuidado em hanseníase como ferramenta de promoção da saúde / Development of a self-care group's actions in leprosy as a tool for health promotion

O objetivo desse trabalho é apresentar as ações desenvolvidas em um ciclo anual do grupo de autocuidado para pessoas atingidas pela hanseníase de uma Unidade de Saúde de Família (USF) de um município do estado de Alagoas. Trata-se de um relato de experiência oriundo de um projeto de extensão. Os encontros foram marcados por momentos teórico-práticos que estimularam a consciência de risco das pessoas atingidas pela hanseníase e pelo protagonismo no processo saúde-doença. Assim, conclui-se que o grupo de autocuidado é um instrumento de empoderamento social vinculado à atenção básica, que tem como fundamento a promoção da saúde.

The aim of this study is to report the actions developed in a self-care group's annual cycle in leprosy of a Family Health Unit of a city in the state of Alagoas. This is a report of an extension project experience. The meetings were marked by the protagonism in the health-disease process and by theoretical-practical moments that stimulated the risk awareness of people affected by leprosy. Thus, it was concluded that the self-care group is an instrument of social empowerment linked to basic care based on health promotion.

Conferências Nacionais de Saúde e a construção do Sistema Único de Saúde ­ SUS: uma revisão / National Health Conferences and the construction of the Single Health System- SUS: a review

O objetivo deste artigo é analisar as 13 primeiras Conferências Nacionais de Saúde, com base no princípio da participação comunitária no processo de construção do Sistema Único de Saúde (SUS). As Conferências Nacionais de Saúde no Brasil têm sido um espaço público para a construção, a organização e a implementação coletiva do SUS. Este texto analisa, por meio de revisão de outros estudos, os fatores que determinaram o sucesso do processo de participação nas conferências de Saúde e examina as origens históricas da criação do SUS no Brasil.

The aim of this article is to analyze the first 13 National Health Conferences based on the principle of community participation in the process of building the Unified National Health System (SUS). The National Health Conferences in Brazil have been a public space for the construction, organization and collective implementation of the SUS. The article analyzes, through a review of other studies, the factors that determined the success of a participatory process in the health conferences and examines the historical origins of the creation of the SUS in Brazil.

A baixa escolaridade está associada ao aumento de incapacidades físicas no diagnóstico de hanseníase no Vale do Jequitinhonha / Low level of schooling is associated with an increase in physical disabilities at diagnosis of leprosy in Jequitinhonha Valley

Introdução: a hanseníase é uma doença infecciosa cujo diagnóstico, quando realizado tardiamente, resulta em dano neural e incapacidades físicas que restringem a participação social do indivíduo e contribuem para o estigma e discriminação. Além disso, fatores de risco ambientais, socioeconômicos e individuais podem contribuir para a vulnerabilidade ao adoecimento e evolução para incapacidades físicas. Objetivo: analisar a influência da escolaridade na ocorrência de incapacidades físicas no diagnóstico da hanseníase no Vale do Jequitinhonha, Minas Gerais. Material e Métodos: trata-se de um estudo transversal realizado na população de casos de hanseníase diagnosticados no Vale do Jequitinhonha, no período de 2001 a 2017, a partir de dados obtidos no Sistema de Informação de Agravos de Notificação (SINAN). A variável dependente foi o grau de incapacidade física no diagnóstico da hanseníase e a variável explicativa o nível de escolaridade dos casos. A análise estatística compreendeu a realização dos testes qui-quadrado, coeficiente de correlação de Spearman e odds ratio. Resultados: foram notificados 1.940 casos de hanseníase no Vale do Jequitinhonha com uma taxa média de detecção de 47 casos/100.000 habitantes. Houve uma correlação inversamente proporcional entre as variáveis escolaridade e grau de incapacidade com significância estatística (-0,17; p<0,0001). Indivíduos sem escolaridade tiveram 82% mais chance de apresentarem incapacidades no diagnóstico de hanseníase quando comparados àqueles com nível fundamental (OR = 1,82; p = <0,0001), a chance de incapacidades foi ainda maior na comparação com a escolaridade de nível médio (OR = 4,03; p<0,0001). Conclusão: o aumento no nível de escolaridade dos casos reduziu a chance de ser diagnosticado com alguma incapacidade instalada.

Introduction: leprosy is an infectious disease whose diagnosis, when performed late, results in neural damage and physical disabilities that restrict the individual's social participation and contribute to stigma and discrimination. In addition, environmental, socioeconomic and individual risk factors can contribute to vulnerability to illness and evolution to physical disabilities. Objective: to analyze the influence of schooling on the occurrence of physical disabilities in the diagnosis of leprosy in the Jequitinhonha Valley, Minas Gerais. Material and Methods: the present cross-sectional study was undertaken among leprosy patients diagnosed in the Jequitinhonha Valley from 2001 to 2017. The data was obtained from the SINAN (National Notifiable Diseases Information System). The dependent variable was the degree of physical disability in the diagnosis of leprosy and the explanatory variable was the educational level of the cases. statistical analysis included the chi-square test, Spearman's correlation coefficient and odds ratio. Results: 1.940 cases of leprosy were reported in the Jequitinhonha Valley with an average detection rate of 47 cases/100.000 inhabitants. There was an inversely proportional correlation between the variables schooling and degree of disability with statistical significance (-0.17, p <0.0001). Individuals with no schooling were 82% more likely to have physical disabilities in the diagnosis of leprosy when compared to those with a low level (OR = 1.82; p = <.0001), the chance of disability was even higher when compared to a intermediate level of schooling (OR = 4.03, p <0.0001). Conclusion: the increase in the level of schooling reduced the chance of being diagnosed with physical disabilities in leprosy patients.

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

Limitation of activity and restriction of social participation in relation to age range, gender, and education in people with leprosy.

BACKGROUND: In Brazil, 38,000 new cases of leprosy are discovered each year, making it a public health problem. OBJECTIVE: To identify whether or not there is an association between activity limitations and the restriction of social participation with some demographic data (age range, gender, and education) of the patients in a Basic Health Unit (BHU), diagnosed with leprosy. METHODS: The SALSA scale was used to assess activity limitations, whereas the Participation scale was used to assess the restriction of social participation. RESULTS: The assessments were conducted with 31 BHU patients diagnosed with leprosy. Males were the most affected by leprosy, the multibacillary was the most prevalent, and education proved to be an important factor when related to the disease injuries among the evaluated individuals. Regarding activity limitations and the restriction of social participation, the percentage of individuals without limitations and without restrictions was greater in both scales. STUDY LIMITATIONS: The main limitation is the small study sample. CONCLUSION: It can be concluded that, for the studied sample, no association was observed between the activity limitations, evaluated by the Salsa scale, nor the restriction of social participation, evaluated by the Participation Scale, with the analyzed demographic data.

A cross-sectional study to assess the stigma associated with tuberculosis among tuberculosis patients in Udupi district, Karnataka.

BACKGROUND: For decades, tuberculosis and other communicable diseases like human immunodeficiency virus/acquired immune deficiency syndrome, leprosy, etc., have been associated with stigma and discrimination by the society; this can interfere with the lifestyle and disease management among these patients. OBJECTIVE: To assess the stigma experienced by tuberculosis patients and to find the factors associated with stigma. METHODS: A cross-sectional study was conducted among 209 sputum-positive and sputum-negative tuberculosis patients. Convenient sampling was used to identify the patients. A predesigned, pretested proforma from Explanatory Model Interview Catalogue developed by World Health Organization was used for data collection. RESULTS: The study revealed that out of 209 respondents, 51.2% of the respondents experienced some form of stigma. Majority of the patients have received only primary education and 71.3% of the respondents were males. Most of the patients were under category 1 of Directly Observed Treatment Short course. Age, education, and smear status of the patient were found to be associated with stigmatization (P<0.05), whereas factors like gender, income, occupation, family history, and marital status were found to be not significantly associated with stigmatization. CONCLUSION: Effective counseling measures are recommended for tuberculosis patients with advancing age and education which can help reduce stigmatization and thereby improve quality of life.

Limitation of activity and restriction of social participation in relation to age range, gender, and education in people with leprosy

Abstract Background: In Brazil, 38,000 new cases of leprosy are discovered each year, making it a public health problem. Objective: To identify whether or not there is an association between activity limitations and the restriction of social participation with some demographic data (age range, gender, and education) of the patients in a Basic Health Unit (BHU), diagnosed with leprosy. Methods: The SALSA scale was used to assess activity limitations, whereas the Participation scale was used to assess the restriction of social participation. Results: The assessments were conducted with 31 BHU patients diagnosed with leprosy. Males were the most affected by leprosy, the multibacillary was the most prevalent, and education proved to be an important factor when related to the disease injuries among the evaluated individuals. Regarding activity limitations and the restriction of social participation, the percentage of individuals without limitations and without restrictions was greater in both scales. Study limitations: The main limitation is the small study sample. Conclusion: It can be concluded that, for the studied sample, no association was observed between the activity limitations, evaluated by the Salsa scale, nor the restriction of social participation, evaluated by the Participation Scale, with the analyzed demographic data.

Suporte e participação social em indivíduos com hanseníase / Social Support and participation of individuals with leprosy

O contexto de isolamento social e de restrição dos relacionamentos sociais gerado pela hanseníase promove adiminuição na participação na comunidade, destacando a importância do suporte social. Desta forma, esse estudo tevecomo objetivo avaliar o grau de restrição de participação e o suporte social recebido pelos indivíduos em tratamentopara hanseníase em dois centros de referência para hanseníase no município de Juiz de Fora-MG, Brasil. Foram aplicadasas Escalas de Participação e de Avaliação do Suporte Social, no primeiro semestre de 2014, nos indivíduos inseridosnesses centros. Para análise estatística foram utilizados teste de Wilcoxon, correlação de Spearman e teste exato deFisher, com nível de significância de p<0,05. A partir dos resultados, observa-se que 60% dos sujeitos não apresentaramrestrição de participação, e altos valores de disponibilidade e de satisfação dos suportes oferecidos. Pode-se ressaltara família e os profissionais de saúde como fonte desse suporte. Destaca-se o suporte social tipo emocional, vistoque os indivíduos com hanseníase que apresentavam incapacidades e os que não tiveram restrição de participaçãoapontaram uma associação com a satisfação desse suporte. A partir deste estudo, conclui-se que o suporte social podeser apontado como um fator protetor, tornando-se essencial a escuta ao indivíduo, não perdendo de vista a noçãode que o cuidado não se remete apenas aos sinais visíveis da doença, mas antes a todo o contexto social ao qual oportador encontra-se inserido

The context of social isolation and restriction of social relationships created by leprosy promotes decreased participationin the community, highlighting the importance of social support. Thus, this study aimed to assess the degree ofparticipation restriction and social support received by individuals in treatment for leprosy in two reference centers forleprosy in the city of Juiz de Fora. The Participation and Evaluation of Social Support Scales were applied in the firsthalf of 2014 to individuals inserted in these centers. Statistical analyses were performed using Wilcoxon test, Spearmancorrelation and Fisher’s exact test, with a significance level of p<0.05. According to the results, 60% of the subjects didnot present participation restriction, and high values of availability and satisfaction of the support offered were observed.The family and health professionals can be highlighted as this source of support. The emotional type of social supportis noteworthy, as individuals with leprosy who had disabilities and those without participation restriction showed anassociation with the satisfaction of that support. It was concluded that social support can be seen as a protective factor,making it essential to listen to the individual, not losing sight of the notion that care does not refer only to the visiblesigns of the disease, but rather the whole social context to which the carrier is inserted

The Impact of a Rights-Based Counselling Intervention to Reduce Stigma in People Affected by Leprosy in Indonesia.

BACKGROUND: This paper assesses the impact of a counselling intervention on reducing leprosy-related stigma in Cirebon District, Indonesia. The unique features of this intervention are its rights-based approach, the underlying Cognitive Behavioural Therapy (CBT) model, the three types of counselling and the lay and peer counsellors who were involved. METHODOLOGY/PRINCIPAL FINDINGS: Mixed methods (e.g. three scales, interviews, focus group discussions and reflection notes) were used to assess the impact of the intervention, which ran over a two-year period. There was a control area with no interventions. The study participants were people affected by leprosy and other key persons (e.g. family members). The sample size differs per method, for example, data regarding 67 counselling clients and 57 controls from a cohort, and notes from 207 counselling clients were examined. The notes showed that most clients faced stigma on a daily basis, whether internalized, anticipated and/or enacted. A significant reduction was found between the before and after total scores of the SARI Stigma Scale (p-value < 0.001), Participation Scale Short (p-value < 0.001) and WHO Quality of Life score (p-value < 0.001) among the counselling clients. While there is also an effect in the control group, it is much larger in the intervention group. Qualitative data indicates that knowledge and rights trigger change. Clients took steps to improve their life such as re-connecting with neighbours, helping in household activities and applying for jobs. Challenges include the wish to conceal their condition. CONCLUSION/SIGNIFICANCE: The findings show that the counselling intervention was effective in reducing stigma, promoting the rights of people with leprosy and facilitating their social participation. More research is needed on how to create a more sustainable intervention, preferably structurally embedded in the health or social services.

Is the WHO disability grading system for leprosy related to the level of functional activity and social participation?

To investigate the relationship between the WHO disability grading system for leprosy with the limitations to perform daily functional activities and the decrease in social participation in participants with leprosy. Participants with a diagnosis of leprosy were recruited at the dermatology ambulatory clinic of the University Hospital of Sergipe. In order to investigate the association of WHO disability grading system for leprosy with activities of daily living measured with the Screening Activity Limitation and Safety Awareness (SALSA) scale and with the social participation (P-scale), we performed an analysis with the Kruskal-Wallis test and the Spearman coefficient. Thirty-six patients diagnosed with leprosy participated in the study. Most of participants had mild to moderate daily activity limitations and 58% of participants did not have any restriction participation. The findings demonstrated that the WHO grading is associated with the level of activity (P < 0·0001; p = 0·58), but not with the level of participation (P <0·05; p = 0·27). Although the WHO grading system is used in Brazil and worldwide as an epidemiological indicator to explain the burden of leprosy, the results of this study demonstrated that in our sample the WHO grading system was not associated with participation. Participation is a complex construct with the influence of different psychosocial factors. In order to determine social participation damage of infectious diseases such as leprosy, it is necessary to develop new index of classification based on a broader definition of disability. Health professionals should consider the international classification of function and health (ICF) to develop such index.

Hegemonia e potenciais de contra-hegemonia nos espaços de participação e controle social em saúde: reflexões sobre a agenda política do Conselho Estadual de Saúde de São Paulo / Hegemony and counter-hegemonic potentials in spaces of social participation and control in health reflections on the political agenda of the Sao Paulo State Health Council

Introdução: A Constituição Federal de 1988 apresenta a saúde como um direito de todos e dever do Estado e institui a universalidade como um dos princípios fundamentais do Sistema Único de Saúde (SUS), o que remete a saúde ao campo dos direitos humanos e sociais garantidos por um Estado Democrático de Direito. Apesar do discurso constitucional não ser uma realidade de acesso a todos a condições favoráveis de saúde e de qualidade de vida, este é muito significativo para a constituição da cidadania. As lutas contra-hegemônicas de resistência ao capitalismo e de defesa dos direitos humanos devem buscar ganhar potência na promoção da cidadania sob a perspectiva da justiça e da equidade social. Os conselhos, arenas de participação e de negociação legítimas, estão abertos a interesses particulares ou corporativos e a presença do poder hegemônico nesses espaços reforça a dimensão privada e particularista no processo de formulação das políticas públicas. Pressuposto: A atuação dos conselheiros do Conselho Estadual de Saúde de São Paulo (CES-SP) ilustra a guerra de posições nos espaços nacionais de participação e controle social em saúde onde a resistência contra-hegemônica se dá no contexto da lógica dominante do poder hegemônico. Objetivo: Compreender e interpretar a perspectiva discursiva dos conselheiros do CES-SP em sua reivindicação pelo direito à saúde e sua universalidade, se esta se aproxima mais ao discurso hegemônico de manutenção e reprodução do status quo ou contra-hegemônico de transformação e emancipação social. Método: Pesquisa social qualitativa desenvolvida em três etapas: exploratória; trabalho de campo; e análise e tratamento do material coletado. A principal ferramenta para a coleta de dados foi a observação não participante de cinco reuniões do CES-SP e da 15ª Conferência Nacional de Saúde. Os achados foram coletados a partir de dados públicos (ata e vídeo das reuniões). Para a análise foi utilizada a abordagem hermenêutica-dialética. Resultados: Os achados foram as falas dos conselheiros do CES-SP durante reunião sobre o Plano Estadual de Saúde 2016-2019, em torno ao debate sobre a proposta de retirar da administração da Organização Social as centrais estaduais de regulação de leitos e distribuição de medicamentos. Conclusões: Há uma disputa em torno à organização do SUS, que vem sendo implementado sob a perspectiva hegemônica dos serviços de atenção à doença, na contramão da resistência contra-hegemônica que defende o sistema público de atenção universal e a indissociação dos princípios da universalidade, integralidade e equidade ao exercício da formulação de políticas, organização dos sistemas e serviços e desenvolvimento das ações de saúde

Introduction: The Brazilian Federal Constitution of 1988 states that health is a right of everyone and a duty of the State, and universality is a fundamental principle of SUS the Brazilian public health system. Universality means that health is a human and social right guaranteed by a Democratic Rule-of-Law State. Although the Constitution statement is still not a reality, where everyone has access to favourable health conditions and life quality, it is very meaningful to the constitution of citizenship in Brazil. The counter-hegemonic resistance against capitalism and for human rights should aim at powerfully promoting citizenship, based on the social justice and equity approach. The councils, spaces of legitimate participation and negotiation, are open to private or corporate interest, and the presence of hegemonic power in the councils enhance the private and individual dimension in the public policies formulation process. Assumption: The performance of the councillors of the Sao Paulo State Health Council illustrates the war of positions in the national spaces of social participation and control in health, where the counter-hegemonic resistance takes place within the dominant logic of the hegemonic power. Objective: To understand and interpret the discursive perspective of the councillors of the Sao Paulo State Health Council in their advocacy for the right to health and for universality, if it would come closer to the hegemonic discourse of the status quo maintenance and reproduction, or to the counter-hegemonic one for social transformation and emancipation. Method: Social qualitative research developed in three stages: exploratory phase; fieldwork; and data analysis and treatment. The main technique for data collection was non-participant observation of five meetings of the Sao Paulo State Health Council and the 15ª National Health Conference; the findings were collected from public data (meetings minute and video). Data analysis was based on the hermeneutic-dialectic approach. Results: The findings were the statements of the councillors of the Sao Paulo State Health Council on a debate around the proposal of taking the management of both São Paulo State medicine distribution and bed management centres out of the hands of a Social Organization; the debate took place during a meeting on the Health State Plan 2016-2019. Conclusions: There is a dispute over the SUS management, which has been implemented according to a hegemonic perspective that advocates for services focused on the disease, different from counterhegemonic perspective that advocates for the public universal healthcare and for the undissociation of the universality, integrality and equity principles to the policy formulation, system and services organization, and health actions development