Disclosure de incidentes de segurança do paciente sob a ótica do Direito do Paciente / Disclosure of patient safety incidents from the Patients' Rights perspective / Disclosure de incidente de seguridad del paciente desde la perspectiva del Derecho del Paciente

Objetivo: demonstrar a incidência dos princípios e direitos dos pacientes no processo de disclosure, que comumente não está associado a esses direitos, mas sim a obrigações profissionais e institucionais. Metodologia: tratou-se de pesquisa teórica, cujo escopo consiste em desenvolver aportes teóricos concernentes ao campo do Direito do Paciente, de modo a participar da sua consolidação e da sua incidência prática. O marco teórico empregado se dividiu em dois eixos: i) disclosure e cultura do disclosure; ii) Direito do Paciente. Resultados: destacam-se os seguintes pontos positivos do disclosure quando integrado ao Direito do Paciente: i) o disclosure é um aspecto significante que impacta o engajamento e o envolvimento do paciente; ii) aumento da confiança do paciente/familiar em relação à instituição de saúde; iii) contribui para o incremento da qualidade no cuidado em saúde; iv) alívio da culpa do profissional de saúde envolvido no evento adverso; v) os pacientes são compensados financeiramente de forma mais rápida e adequada. Conclusão: o disclosure é a resposta adequada, transparente e empática a um incidente que causa danos ao paciente, bem como é uma ferramenta de efetivação dos seus direitos.

Objective: to show the influence of patients' principles and rights on the process of disclosure, which is commonly associated not with these rights but with professional and institutional obligations. Methods: this is a theoretical research that aims to contribute to the field of patients' rights and to participate in its consolidation and practical impact. The theoretical framework was divided into two axes: i) disclosure and disclosure culture; ii) patients' rights. Results: the positive aspects of disclosure when integrated into patients' rights are: i) disclosure is an important aspect that affects patient engagement and participation; ii) it increases patient/family trust in the health care institution; iii) it contributes to improving the quality of health care; iv) it relieves the health care professionals involved in the adverse event of their guilt; v) patients are financially compensated more quickly and appropriately. Conclusion: disclosure is the appropriate, transparent, and compassionate response to an incident that causes harm to the patient and a tool to enforce the patients' rights.

Objetivo: demostrar el impacto de los principios y derechos de los pacientes en el proceso de disclosure, que comúnmente no se asocia a estos derechos, pero sí a las obligaciones profesionales e institucionales. Metodología: se trata de una investigación teórica, cuyo objetivo es desarrollar aportes teóricos en el campo del Derecho del Paciente, para participar en su consolidación y su impacto práctico. El marco teórico utilizado se dividió en dos ejes: i) disclosure y cultura de disclosure; ii) Derecho del Paciente. Resultados: los siguientes aspectos positivos de disclosure se destacan cuando se integran en la Ley del Paciente: i) disclosure es un aspecto significativo que impacta el compromiso y la participación del paciente; ii) aumento de la confianza del paciente/familia en la institución de salud; iii) contribuye al aumento de la calidad de la atención en salud; iv) alivio de la culpa del profesional de la salud involucrado en el evento adverso; v) los pacientes son compensados económicamente de forma más rápida y adecuada. Conclusión: disclosure es la respuesta adecuada, transparente y empática a un incidente que causa daño al paciente, además de ser una herramienta para hacer valer sus derechos.

Intracardiac Repair in Late Adolescent and Adult Tetralogy of Fallot — Early and Midterm Results from a Tertiary Care Centre

Abstract Introduction: In developing countries like India, it is common for late presentation of Tetralogy of Fallot (TOF) patients to a hospital as compared to that of developed countries. The objective of this study is to analyze the surgical outcome of TOF patients with age > 15 years. Methods: This is a retrospective descriptive study of the surgical outcomes of 45 adult patients undergoing correction for TOF. Epidemiology, symptomology, and preoperative evaluation were performed. Results: Most of the patients were male (33 [73%]). The median age was 21 years. A total of 42 (93.33%) patients had subaortic ventricular septal defect (VSD), while three (6.6%) patients presented with doubly committed VSD. The most common type of right ventricular outflow tract (RVOT) obstruction was combined infundibular and valvular types, accounting for 34 cases (75.5%). Six patients had infundibular RVOT obstruction, while three patients (6.6%) had predominantly valvular pulmonary stenosis. We performed trans-right atrial repair in 33 patients. Right atrium-pulmonary artery approach was used in five patients (11.1%). The most common postoperative complication was right bundle branch block, seen in 14 patients, with a mortality rate of 2% in the early postoperative period. We achieved excellent early and midterm survival results and significant improvement in functions and disease-free quality of life. Conclusion: Intracardiac repair in adult TOF can be performed with low mortality, less residual RVOT obstruction, and need for revision of RVOT far less frequent by using the Jhajhria Infundibular Resection Adequacy Assessment technique (JIRAAT) to assess for adequacy of infundibular resection.

El derecho a la salud en tiempos de pandemia en Colombia: entre la inequidad endémica y el estado de emergencia / The right to health in times of pandemic in Colombia: between endemic inequity and the state of emergency / O direito à saúde em tempos de pandemia na Colômbia: entre a disparidade endêmica e o estado de emergência

Propósito/Contexto. La pandemia por COVID-19 y la emergencia sanitaria desencadenada permite analizar, desde la bioética y el bioderecho, los problemas relativos al principio de justicia distributiva, en el contexto estructural de la inequidad endémica en Colombia. Metodología/Enfoque. Este artículo realiza un análisis de los ajustes normativos en Colombia en relación con la garantía del derecho a la salud, en el contexto de la atención a la pandemia por SARS-CoV-2. Resultados/Hallazgos. A pesar de los ajustes normativos y la declaración del estado de emergencia sanitaria en Colombia, la persistencia de la inequidad social y económica en distintas regiones, la no intervención sobre determinantes sociales, las irregulares condiciones laborales de los trabajadores de la salud y las dificultades para materializar el principio de reciprocidad constituyen barreras para mitigar los efectos negativos de la pandemia sobre las poblaciones más vulnerables. Discusión/Conclusiones/Contribuciones. Ningún sistema de salud en el mundo estaba preparado para los retos que genera la pandemia y aun cuando se emitió normatividad de contingencia, siguen siendo críticas las profundas brechas de justicia distributiva e inequidad regional en Colombia, así como el incumplimiento de principios enunciados en la ley estatutaria de salud.

Purpose/Context. The COVID-19 pandemic and subsequent health emergency allow analyzing, from bioethics and biolaw, problems related to the principle of distributive justice in the structural context of endemic inequality in Colombia. Method/Approach. This article analyzes regulatory adjustments in Colombia that guarantee the right to health amidst the SARS-CoV-2 pandemic. Results/Findings. Despite regulatory adjustments and the declaration of the state of health emergency in Colombia, persistent social and economic inequality in various regions, failure to intervene social determining factors, the poor working conditions of health workers, and difficulties in materializing the principle of reciprocity have hindered the mitigation of the pandemic's adverse effects on the most vulnerable populations. Discussion/Conclusions/Contributions. No health system in the world was prepared for the challenges the pandemic has posed. Even though contingency regulations have been issued in Colombia, deep gaps in distributive justice, regional inequality, and failure to comply with principles outlined in the statutory health law remain critical.

Objetivo/Contexto. A pandemia do COVID-19 e a emergência de saúde desencadeada permitem-nos analisar, a partir da bioética e o biodireito, os problemas relacionados ao princípio de justiça distributiva, no contexto estrutural da disparidade endêmica na Colômbia. Metodologia/Abordagem. Este artigo faz uma análise dos ajustes regulamentares na Colômbia em relação à garantia do direito à saúde, no contexto da atenção à pandemia de SARS-CoV-2. Resultados/Descobertas. Além dos ajustes regulamentares e a declaração do estado de emergência sanitária na Colômbia, a persistência da desigualdade social e econômica em diferentes regiões, a não intervenção sobre determinantes sociais, as condições irregulares laborais dos trabalhadores da saúde e as dificuldades em materializar o princípio de reciprocidade constituem barreiras para mitigar os efeitos negativos da pandemia nas populações mais vulneráveis. Discussão/Conclusões/Contribuições. Nenhum sistema de saúde no mundo estava preparado para os desafios gerados pela pandemia e, mesmo quando foram emitidos os regulamentos de contingência, seguem sendo críticas às profundas brechas de justiça distributiva e a disparidade regional na Colômbia, bem como o incumprimento dos princípios enunciados na lei estatutária de saúde.

Influence of patients’ rights charter on health systems responsiveness in selected counties in Kenya: health care provider perspective

Background: The role of health care providers in the implementation of responsiveness of health systems is unclear. Responsiveness of health systems is one of the goals set out by WHO in 2000. Effective leadership and governance of health systems incorporates all players involved in policy implementation. The objectives of the study were to establish how the health care provider’s awareness of patients’ rights charter influence health systems responsiveness and to establish how the health care provider practice of patients’ rights charter influence responsiveness of health systems in primary care settings.Methods: This was an exploratory cross section descriptive study design that used a psychometric semi- structured questionnaire to collect qualitative data that was analyzed quantitatively. Respondents were 62 purposively sampled health care providers from four, primary care health facilities. Key informant interviews from the four health facilities in-charges were carried out. Data was analyzed using SPSS vs 25 and themes.Results: Health care provider awareness of the content of patients’ rights charter (r=0.612*, p<0.001) and practice of patient’s right charter (r=0.610*, p<0.001) were statistically significant and influenced health systems responsiveness.Conclusions: Implementation of patients’ rights charter has an influence on responsiveness of health systems. Leadership and Governance of health systems requires a structured approach to implementation of policies that positively influence responsiveness of health systems. Supervision of health care providers for best practice can provide a basis for replication in other primary care facilities and lead to achieving responsiveness of health systems.

Internação Psiquiátrica Involuntária: estudo comparativo das Normas de Saúde Mental do Brasil e Inglaterra/País de Gales / Involuntary Psychiatric Admission: comparative study of Mental Health legislation from Brazil and England/Wales

A internação involuntária é uma medida controversa que pode levar a violação de vários direitos humanos. Nessa perspectiva, faz-se necessária uma legislação para definir e limitar as circunstâncias em que isso pode ocorrer. Políticas e leis bem formuladas podem promover o desenvolvimento de serviços acessíveis na comunidade, estimular campanhas de sensibilização e de educação, e estabelecer mecanismos legais e de supervisão para prevenir violações aos direitos humanos. Nesse contexto, este estudo descritivo-comparativo apresentou como objetivo analisar as semelhanças e diferenças entre as legislações em saúde mental relacionadas à internação psiquiátrica involuntária no Brasil e Inglaterra/País de Gales. Utilizou-se para o levantamento de dados de pesquisa bibliográfica e pesquisa documental. A análise foi realizada a partir da Lista de Checagem da Organização Mundial da Saúde (OMS) para a Legislação de Saúde Mental. Para a etapa de comparação dos dados das duas jurisdições, foi utilizado o método comparativo. Sobre os resultados da comparação da Lista de Checagem da OMS com as legislações do Brasil e Inglaterra/País de Gales, na legislação brasileira foram encontrados 52 (31,32%) dos 166 padrões da OMS, enquanto que na legislação da Inglaterra/País de Gales foram encontrados 90 (54,2%). A partir da análise foi possível concluir que: a legislação da Inglaterra/País de Gales traz procedimentos mais claros e detalhados sobre "internação involuntária" e possui "mecanismos de fiscalização" mais eficazes do que o Brasil; apesar das lacunas quanto aos procedimentos para apelações contra decisões de incapacidade e a revisão da necessidade de um tutor, a legislação apresenta uma boa cobertura sobre "competência, capacidade e tutela", tema de elevada importância, principalmente após a ratificação da CDPD, e que o Brasil não aborda em sua legislação; a legislação brasileira elenca um rol maior de "direitos fundamentais", porém não prevê "penalidades" quanto ao descumprimento desses direitos. Já a Inglaterra/País de Gales cobre amplamente essa questão. As principais semelhanças entre Brasil e Inglaterra/País de Gales referem-se aos padrões que necessitam de revisão: "Pacientes voluntários", situações de emergência", direitos econômicos e sociais", "questões civis" e "grupos vulneráveis". Ambas jurisdições também apresentam o mesmo nível de cobertura quanto a "pesquisa clínica e experimental", e "tratamentos especiais, isolamento e restrições". Em suma, a análise das legislações de saúde mental apresentada neste trabalho sugere que documentos internacionais de direitos humanos, como o Livro de Recursos OMS, são instrumentos importantes e que podem nortear a construção de legislações. É necessário também que a formulação de leis e políticas de saúde mental esteja articulada com os documentos internacionais de direitos humanos como a CDPD. Espera-se que o presente estudo traga a tona a reflexão das autoridades competentes sobre a necessidade de solicitar auditorias mais profundas no âmbito da legislação nacional de saúde mental, realizadas por comitês multidisciplinares, como recomendado pela OMS. A legislação de saúde mental deve estar num processo de constante evolução, centrada na busca da consolidação dos direitos das pessoas com transtornos mentais

Involuntary admission is a controversial measure that can lead to violation of various human rights. From this perspective, legislation must define and limit the circumstances in which this may occur. Well-formulated policies and laws can promote the development of accessible services in the community, stimulate awareness and education campaigns, and establish legal and supervisory mechanisms to prevent human rights violations. In this context, this descriptive- comparative aimed at analyzing the similarities and differences between the mental health' laws related to involuntary psychiatric admission in Brazil and England/Wales. In order to collect data, the author used bibliographic and documentary research. The analysis was based on the World Health Organization's Checklist on Mental Heallth Legislation. To compare data from the two jurisdictions, the author used the comparative method. Results comparing the WHO Checklist with the laws from Brazil and England/Wales showed that the Brazilian legislation meets 52 (31.32%) of the 166 WHO standards, while legislation in England/Wales meets 90 (54.2%). Some conclusions resulted from the analysis: the law from England/Wales establishes clearer and detailed procedures for "involuntary admissions" and has "oversight and review mechanisms" more effective than Brazil; despite the shortcomings in the procedures for appeals against disability decisions and the review of the need for a guardian, the legislation presents a medium compliance of "competence, capacity and protection", a subject of high importance, especially after the ratification of the CRPD, and Brazil does not address these issues in its legislation; Brazilian establishes a larger list of "fundamental rights", but does not provide "penalties" for the breach of those rights, while England/Wales meets WHO criteria in relation to this issue. The main similarities between Brazil and England/Wales refer to standards that require review: "voluntary patients", "emergency treatment", "economic and social rights", "civil issues" and "protection of vulnerable groups." Both jurisdictions also have the same level of compliance regarding "clinical and experimental research", and "special treatments, seclusion and restraint". In sum, the analysis of mental health legislation presented in this paper suggests that international human rights documents, such as the WHO Resource Book, are important tools which can guide the construction of legislation. It is also necessary that the formulation of mental health laws and policies are articulated with international human rights documents such as the CRPD. In this sense, this study may bring light for a reflection from competent authorities on the need to have audits for national mental health legislations, carried out by multidisciplinary committees, as recommended by WHO. Mental health legislation should be in a process of constant evolution, focusing on the search for the consolidation of rights of people with mental disorders

Violência obstétrica como questão para a saúde pública no Brasil: origens, definições, tipologia, impactos sobre a saúde materna, e propostas para sua prevenção / Abuse and disrespect in childbirth care as a public health issue in Brazil: origins, definitions, impacts on maternal health, and proposals for its prevention

Disrespect and abuse (in Brazil called obstetric violence), described by different terms, is increasingly used in social activism, in academic research and public policy formulation, and was recently recognized as a public health issue by the World Health Organization. As an innovative theme, it requires a mapping its origins, definitions, typology, impacts on maternal health and proposals for its preventing and remedy. We present a critical-narrative review about this issue, including academic literature, productions of social movements and institutional documents, in Brazil and internationally. After a short historical overview, we map the definitions and types of violence. The complex causation of these forms of violence is discussed, including the role of professional training, the organization of health services, and the implications for maternal morbidity and mortality. Finally we present interventions in public health that have been used or proposed to prevent and mitigate obstetric violence, and an agenda for innovation and research in this area...

A violência obstétrica, descrita por diferentes termos, cada vez mais é utilizada no ativismo social, em pesquisas acadêmicas e na formulação de políticas públicas, sendo recentemente reconhecida como questão de saúde pública pela Organização Mundial da Saúde. Como tema inovador, requer um mapeamento de suas origens, definições, tipologia, impactos na saúde materna e propostas de prevenção e superação.Apresentamos esta revisão crítico-narrativa sobre o tema, abarcando literatura acadêmica, produções dos movimentos sociais e documentos institucionais, do Brasil e exterior. Após breve recuperação histórica do tema,mapeiam-se as definições e as tipologias de violência identificadas. Discute-se a complexa causalidade destas formas de violência, incluindo o papel da formação dos profissionais e da organização dos serviços de saúde e as implicações na morbimortalidade materna. Finaliza-se com intervenções em Saúde Pública que têm sido utilizadas ou propostas para prevenir e mitigar a violência obstétrica, e uma agenda de pesquisa de inovação nesta área...

Estándares de Acreditación "derechos de pacientes": revisión y estado actual en Centros de Tratamiento en Drogadicción en Colombia / Accreditation standards concerning patients' rights: a review of the current state of affairs related to drug-addiction treatment centers in Colombia

Objetivos Caracterizar y referenciar estado actual del grupo estándares de acreditación "derechos de los pacientes" en muestra de instituciones de tratamiento en drogas de Colombia. Métodos Estudio de enfoque mixto, empírico de tipo descriptivo y hermenéutico; muestra piloto de 21 centros de tratamiento en drogas en las cuales se determina estado actual de los estándares de acreditación "derechos de los pacientes"; se evalúa posible relación o independencia de las variables categóricas mediante prueba exacta de Fisher con nivel de significancia de 0,05. En fase paralela se realiza revisión documental de referenciación. Resultados: Los Centros de tratamiento en drogas suministran información en mayor proporción a familiares (95 %) que a los pacientes (90 %) y menores de edad (81 %). Representan posibles barreras de acceso al tratamiento, ser portador o enfermo VIH (29 %), orientación sexual LGTB (14 %) y ser mujer (10 %); religión y raza no son condiciones para discriminación o barreras de atención. Existen estándares coincidentes en el grupo "derechos de los pacientes" en el sistema de acreditación Colombiano con The Joint Commission, pero esta última entidad acreditadora tiene desarrollos importantes en un manual específico aplicable a instituciones de tratamiento de adicción a drogas. Conclusiones Los centros evaluados en Colombia, muestran logros en el grupo de estándares para la acreditación derechos de los pacientes, pero estos estándares requieren revisión para su adaptación a los desarrollos internacionales y a la particularidad de la población adicta y de las instituciones de tratamiento.

Objective Characterizing and contrasting the current state of affairs concerning patients' rights-associated accreditation standards in a sample of drug-addiction treatment centers in Colombia. Methods This was mixed methodology research (i.e. descriptive and hermeneutic); a pilot sample of 21 drug-addiction treatment centers in Colombia was used for determining the current state of patients' rights accreditation standards. The possible relationship or independence between categorical variables was evaluated by using Fisher's exact test (0.05 significance level). A contrasting documentary review was made at the same time. Results Drug-addiction treatment centers provided more information for families (95 %) than patients (90 %) or minors (81 %). Possible barriers to gaining access for treatment were being HIV positive (29 %), being part of the LGTB population (14 %) and being female (10 %); religion and ethnicity were not seen as grounds for discrimination or treatment barriers. The patients' rights standards group coincided with Colombia´s accreditation system and Joint Commission standards; however, the latter accreditation entity has made significant progress regarding a specific manual for drug-addiction treatment centers. Conclusions The centers assessed in Colombia had made advances regarding accrediting patients' rights, but such standards require revision for being adapted to international developments and specific matters involved in treating addicts and the specific conditions for institutions dealing with such treatment.

Análisis de la actualización del Plan Obligatorio de Salud del Sistema de Seguridad Social en Salud colombiano, 2009-2012 / An analysis of the updating of the Colombian social security system's mandatory health plan, 2009-2012

Objetivo Analizar, desde la perspectiva del derecho a la salud, la actualización del Plan Obligatorio de Salud (POS) del Sistema General de Seguridad Social en Salud (SGSSS) colombiano, comparando los contenidos del POS vigente hasta el 31 de diciembre de 2009 (POS-2009) con los contenidos del POS vigente a partir del 1 de enero del año 2012. Metodología Estudio descriptivo que indagó las modificaciones cuantitativas y las características de esas modificaciones del POS-2012 en comparación con el POS-2009. Resultados Hubo variación importante en el número y en las características de los servicios y de los medicamentos entre los POS comparados. En total se incluyeron 1 724 nuevos procedimientos y 128 nuevos medicamentos en el POS-2012, al tiempo que se excluyeron 366 procedimientos y 79 medicamentos. Algunas de esas inclusiones se corresponden con la frecuencia de demandas mediante acciones de tutela en el período 2009-2011. Discusión y conclusiones Hay avances significativos en los contenidos del POS-2012 que responden a algunas de las más frecuentes demandas de la población.(AU)

Objective Analyzing the updating the Colombian social security system's mandatory health plan (MHP),from a perspective of the right to health, by comparing and contrasting MHP content valid until 31st December 2009 (POS-2009) with MHP content from 1st January 2012 onwards (POS-2012). Methodology This was a descriptive study aimed at ascertaining the quantitative changes made and comparing the characteristics of modifications made in POS-2012 to POS-2009. Results Variation was observed between the two versions of the MHP regarding the number and characteristics of services and drugs;1,724 new procedures and 128 new medicines were included in the 2012 MHP, while 366 procedures and 79 medicines present in the 2009 MHP were excluded from MHP 2012. Some inclusions were related to frequent writs being issued from 2009-2011demanding access to such procedures and drugs. Discussion and Conclusions Significant progress was found regarding the content of the 2012 MHP compared to 2009 provision, thereby addressing some of the population's most frequent writs and plaints.(AU)

Uso de hemocomponentes en la práctica médica e implicaciones legales / Use of blood products in medical practice and legal implications

El uso de hemocomponentes en la práctica médica, aporta grandes beneficios, sin embargo es importante tomar en cuenta las indicaciones médicas específicas, ya que existen riesgos asociados a este tratamiento, por lo cual cada vez se vuelve más prioritario tener en cuenta las legislaciones en cuanto a los derechos de los paciente y la responsabilidad médica adquirida, cuando implica la vida. El pilar fundamental para la defensa legal de un médico consiste en la comunicación asertiva con el paciente, en el cual se facilite información, de forma clara que a su vez tenga respaldo siempre en un consentimiento informado.

Conocen los usuarios sus deberes y derechos?: una evaluación posterior a una intervención / Do the users know their rights and responsibilities?: a post-intervention evaluation

Introduccion: Los derechos y deberes de los enfermos son un factor fundamental en un sistema de salud y un indicador de la calidad del servicio, por tal motivo, las instituciones prestadoras de servicios de salud tienen la responsabilidad de promover su conocimiento, no sólo en el personal asistencial y administrativo, sino también en sus usuarios, a fin de que ellos puedan exigir el cumplimiento de los mismos. Objetivo: Determinar el nivel de conocimiento de los usuarios sobre sus derechos y deberes en una institución de salud de Tercer Nivel de atención. Materiales y métodos: Se realizó un estudio descriptivo de corte trasversal luego de la implementación de un proyecto educativo que buscaba socializar entre los usuarios sus derechos y deberes. Se calculó un tamaño muestral de 369 usuarios, con un nivel de confianza del 95,0%, poder estadístico del 80,0%, prevalencia esperada de buenos conocimientos del 50,0%, y un IC 95% (45,0-55,0%). Se realizó muestreo aleatorio simple. Se solicito consentimiento informado a todos los participantes. Resultados: El 54,7% de los usuarios tenía un nivel de conocimiento bueno, el 40,5% regular y el 4,8% deficiente. El nivel de conocimientos fue mayor, con respecto a una encuesta anterior. El 10,9% de los usuarios manifestaron que habían recibido información sobre sus derechos y deberes, y de estos el 40,4% la recibieron en la ESE-HUS. Conclusiones: En su mayoría, los usuarios tenían un buen nivel de conocimientos sobre derechos y deberes de los enfermos, a pesar de no haber recibido información sobre el tema.

Introduction: Patients’ rights and responsibilities are a fundamental factor in health system and a service quality indicator of the service, for that reason, health-care institutions have the responsibility to promote ther awareness not only among health-care and management staff, but also in their users, so that these could deman their compliance. Objective: To determine the users’ level of knowledge or awareness in terms of their rights and responsibilities in a Third-Level health-care institution. Materials and methods: A transversal cut descriptive study was conducted after implementation of an educational project aimed to socialize users’ rights and obligations among patient population. A sample group of 369 users was calculated, with 95.0%, trust level, 80.0% statistical power, 50.0% expected awareness prevalence, and 95.0% (45.0-55.0%) IC. Simple random sampling was conducted. Consent in writing was obtained from all participants. Results: Fifty four point seven (54.7%) of users had good awareness level, with 40.5% acceptable and 4.8% deficient. Awareness level was higher than that for a previous sampling. 10.9% of users stated having received information regarding their rights and responsibilities, of which 40.4% obtained their knowledge at the ESE-HUS. Conclusions: Most users showed good patient’s rights and responsibilities awareness levels, despite the fact that they had not received information in that respect.

A intervenção do serviço social em crianças com fibrose cística e suas famílias / The intervention of the social worker in children with cystic fibrosis and their families

Este artigo tem como objetivo partilhar a experiência de intervenção profissional do assistente social na saúde, mais precisamente com crianças portadoras de fibrose cística, refletindo sobre o impacto do diagnóstico nas famílias e como a sociedade brasileira vem se organizando através de políticas públicas para o enfrentamento desta doença.

This article aims to share the experience of the social worker intervention in children presenting with cystic fibrosis, reflecting on the impact of diagnosis on families and how Brazilian society has organized itself through public policies in order to cope with this disease.

Consentimiento informado / Informed consent

La sociedad moderna demanda de los sistemas de salud y de los profesionales de la salud, principios y metas que respeten la dignidad y los derechos del individuo. Los pacientes merecen ser adecuadamente informados sobre su enfermedad, la naturaleza de sus causas, el pronóstico, el manejo, las alternativas de tratamiento o cuidados paliativos, según corresponda. El consentimiento informado, más que un documento formal, es un modelo de una virtuosa relación entre los profesionales de salud y los pacientes (y familiares), donde el respeto por la autonomía y autodeterminación del sujeto afectado por la enfermedad, es el principio más importante en el proceso de decisión del paciente acompañado por el médico. Es en este contexto, en que médicos y profesionales de la salud deben mejorar sus habilidades de comunicación, de tal forma que se privilegie el derecho del paciente de elegir lo mejor para él o ella, basado en sus principios, filosofía,religión, creencias y características personales.

Modern society demands from healthcare systems and healthcare providers, principles and goals that respect dignity and rights of the individuals. Patients deserve to be properly informed about this disease, its nature and causes, as well as the prognosis and alternatives of management, either therapeutics or palliative in its objective. Informed concept is, rather than a formal document, a model of virtuous relationship between healthcare professionals and patients (and their relatives), where respect for autonomy and self- determination of the subject affected by the disease, has become the most important principle in the decision, making process for physicians. On this setting, doctors and healthcare professionals need to increase and improve their communication skills in order to privilege patients rights to choose the best for him or herself, based on his or her principles, philosophy, religion, believes and personal characteristics.

Acesso da comunidade surda à rede básica de saúde / Deaf community's access to the primary health care network

Mediante o Decreto 5626/05, os serviços de saúde devem atender diferenciadamente a Comunidade Surda, minoria sociolinguística e cultural, usuária da Língua de Sinais Brasileira (LIBRAS). O objetivo deste trabalho é apresentar as peculiaridades do acesso da população surda aos serviços de Atenção Básica e a percepção dos gerentes de unidades de saúde a esse respeito. Quanto aos métodos, o projeto foi realizado em duas etapas: na primeira (a fase exploratória), foram realizadas quatro entrevistas com informantes-chave pertencentes à Comunidade Surda e membros representativos do governo (dois usuários e dois administradores da Secretaria Municipal e Estadual de Saúde de SP); na segunda etapa, aplicou-se um questionário para 21 gerentes de Unidades Básicas de Saúde (UBS) de uma sub-regional do Município de São Paulo. Os resultados demonstraram dificuldades no acesso às UBS. Os gerentes das UBS demonstram perceber que a rede encontra-se em processo de mudança de paradigmas para a realização desse atendimento, deslocando-se do paradigma dos serviços para o paradigma de suporte, e também apresentam grande interesse por iniciativas relacionadas à área, necessitando de recursos para desenvolvê-las. Dessa forma, há um descompasso entre as determinações jurídicas, as expectativas dos pacientes Surdos e o que se pode oferecer, hoje, nas UBS. Tais fatos nos convidam a refletir sobre o tema, os próprios princípios do SUS e o desenvolvimento social brasileiro.

Código dos direitos e deveres da pessoa hospitalizada no SUS: o cotidiano hospitalar na roda de conversa / Código de los derechos y deberes de la persona hospitalizada em Le Sistema Único de Salud brasileño (SUS): el cotidiano hospitalario en conversaciones conjuntas / Code of rights and obligations of hospitalized patients within the Brazilian National Health System (SUS): the daily hospital routine under discussion

Os direitos dos pacientes consistem em dispositivo para mudar a atenção e a gestão no Sistema Único de Saúde - SUS. O objetivo deste trabalho é apresentar as rodas de conversa sobre os direitos e deveres dos usuários do SUS no âmbito das unidades hospitalares. Trata-se de um estudo descritivo e exploratório, realizado em dois hospitais de Fortaleza, Ceará. Foram promovidas, em cada serviço, três rodas de conversa com 40 trabalhadores de várias profissões e setores. Utilizou-se para o debate o texto do Código de Direitos e Deveres do Paciente no SUS/CE. Os discursos foram analisados segundo a Análise de Conteúdo, consoante Lawrence Bardin. Percebeu-se que normas consolidadas dificultam a efetivação dos direitos, e a roda de conversa ampliou a visão crítica, promovendo discernimento. Esta se revelou importante instrumento de educação para a cidadania e humanização do processo de cuidado.

Patients' rights constitute a mechanism for changing the care and management within the Brazilian National Health System (SUS). The aim of this study was to present round-table discussions about the rights and obligations of SUS patients within the hospital environment. This was a descriptive, exploratory study, conducted at two hospitals in Fortaleza, Ceará. Three round-table discussions were held at each institution, involving 40 staff members from various professions and sectors. The debate was on the text of the Code of Rights and Obligations of SUS Patients in Ceará. The discourse was analyzed in accordance with the content analysis method of Lawrence Bardin. It was perceived that the consolidated rules made it difficult to put the rights into practice, and the round-table discussion broadened this critical view through its insight. This was shown to be an important educational instrument for citizens' rights and for humanization of the healthcare process.

Los derechos de los pacientes consisten en dispositivo para modificar la atención en la gestión del SUS. El objeto de este trabajo es el de presentar ruedas de conversación sobre los derechos y deberes de los usuarios del SUS en el ámbito de las unidades hospitalarias. Se trata de un estudio descriptivo y exploratorio realizado en dos hospitales de Fortaleza, estado de Ceará, Brasil. Se organizaron, en cada servicio, tres ruedas de conversación con 40 trabajadores de varias profesiones y sectores. Se utilizó para el debate el Código de Derechos y Deberes del Paciente en el SUS de Ceará. Los discursos se analizaron según el Análisis de Contenido de acuerdo con Lawrence Bardin. Se verificó que las normas dificultan la efectivación de los derechos. Se amplió la visión crítica y el discernimiento; revelándose un importante instrumento de educación para la ciudadanía.

Conhecimento de gestantes atendidas em Unidades Básicas de Saúde sobre o direito à presença do acompanhante durante o trabalho de parto / Knowledge of pregnant women's right to have a companion present during childbirth in Basic Units of Health / Knowledge of pregnant womenʼs right to have a companion present during childbirth in Basic Units of Health

Introdução - O Congresso Nacional Brasileiro promulgou em 2005 a Lei que garante às parturientes o direito à presença de acompanhante durante o trabalho de parto, parto e pós-parto imediato, nos hospitais públicos e conveniados pelo Sistema Único de Saúde. Contudo, observa-se na prática clínica que a maioria das mulheres quando inseridas nas instituições hospitalares brasileiras dão à luz desacompanhada. O objetivo do estudo foi verificar se as mulheres conhecem o direito à presença do acompanhante durante o parto e se elas são informadas durante o pré-natal sobre este direito. Material e Métodos - Desenvolveu-se um estudo descritivo com abordagem quantitativa, realizado em três Unidades Básicas de Saúde do Distrito Sul da cidade de Campinas, interior de São Paulo. A população foi constituída por mulheres no terceiro trimestre de gestação, que realizaramo pré-natal nestas unidades no ano de 2006. Resultados - Participaram do estudo 50 gestantes em idade jovem, predominantemente casadas, com baixa escolaridade e atuantes em trabalhos domésticos. Observou-se que, 52,0% das participantes não tiveram acompanhantes durante o pré-natal e a maioria (60,0%) mencionou que não conhecia seu direito ao acompanhante,enquanto a minoria que detinha tal informação a obteve por meio de fontes não fidedignas, como família e amigos. Conclusões - As gestantes são pouco informadas pelos profissionais de saúde sobre seus direitos durante o período gestacional. Urge a necessidade da realização de atividades educativas direcionadas às gestantes, efetivadas pelos profissionais de saúde, visando o esclarecimento sobre seus direitos enquanto mulher, mãe e cidadã.

Introduction - The Brazilian National Congress promulgated in 2005 the Law that guarantees to women in labor the right to have a companion present during the childbirth and immediate after childbirth, in public hospitals which had agreement with Single Health System. However, it is observed in practical clinic that most of women when inserted in Brazilian hospital institutions give light alone. The objective of the study was to verify if women know their right to the have a companion present during the childbirth and if they are informed during the prenatal of this right. Material and Methods - A descriptive study with quantitative boarding was developed, carried through in three Basic Units of Health in the South District of the city of Campinas - São Paulo. The population was constituted by women in the third trimester of gestation, who had carried through the prenatal in any of these units in the year of 2006. Results - Fifty pregnant women in young age, predominantly married, with low education level and that worked as housewives participated of the study. It was observed that 52.0% of the participants didn't have companion present during the prenatal and the majority (60,0%) mentioned that did not know their right to the companion, while the minority that withheld such information got it by means of not trustworth sources, as family and friends. Conclusions - The pregnant women are little informed by health professionals about their rights during the pregnancy. It is necessary educative activities directed to the pregnant women, promoted by health professionals, aiming at the clarification on their rights while woman, mother and citizen.

Relativity of the patients' right frou the prevention and cure of SARS / 中国医学伦理学

Any rights should be within the range of exertion, as well as the patients' right is relative. Which kind of the rights the patients have? Why should the rights be lmited? and what's that? To avoid the abuse of rights, the text discusses the limits of the patients' rights from the prevention and cure of the SARS disease.

Medical Personnel be Restricted to their Occupational Morals throngh Establishing "the Patients' Rights / 中国医学伦理学

In medical work, we usually consider patients as our "God", but our "God" who actually don't know their rights of being patients. think doctors to be "the God", "The Saviour". Many of our medical staff are not realizing patiends' rights and that patients' alternatires of doctors is the core of retaining the relationship between patients and medical personnel. In the essay through establishing patients' rights, medical personnel will be restricted to their occupational morals.

Thoughts from the Jurisprudence Angle on the Doctor and Patient′s Right Conflict——Analysis on the Conflict Between Doctors′ Special Right to Intervene and Patients′ Right of Informed Consent / 中国医学伦理学

The conflict between doctors′ special right to intervene and patients′ right of informed consent is a main cause of the current tense doctor-patient relationship with the absence of related legislation.This article gave suggestions on legislation and possible ways for solving the problems after analyzing the two rights from the angles of basic connotation,research progress of comparative law,and the underlying reason for the two rights′ conflict.

How to Solve Contraventions Between Clinical Practice And Protecting Patients' Rights of Intimacy / 中国医学伦理学

Nowadays the antravention between clinical practice and protecting rights of patients' intimacy becomes more and more intense.Face to this stuation,the authors take a investigotion about 365 clinical interns in order to find out solutions.

Patients' right Deferderce and Hospital Moral Duties / 中国医学伦理学

Doctor-patient right conflict should be noticed at present. Hospital administrators should strengthen ''sense of patients right" and get to the consistency of economic administrative aim and patients right protection while making choices in administration. They should realise the combination between rights and duties of health staff and reach the hermonization of society, patients and hospital beneficts.