New problems of a new health system: the creation of a national public policy of rare diseases care in Brazil (1990s-2010s). / Nuevos problemas de un nuevo sistema de salud: la creación de una política pública nacional de atención de enfermedades raras en Brasil (1990-2014).

This study discusses actors and institution movements leading to the disclosure in 2014 of Resolution 199 by the Brazilian Ministry of Health, which establishes the National Policy for the Comprehensive Care of Persons with Rare Diseases. Taking as sources the mainstream newspapers, drafts law, and secondary literature on the subject, we begin our analysis in the early 1990s when the first patient associations were created in Brazil - mainly for claiming more funds for research on genetic diseases - and arrive at the late 2010s when negotiations for a national policy are taking place in the National Congress. Resolution 199 is part of an ongoing process and the path towards its disclosure and the complications that followed have given us elements to discuss contemporary aspects of the Brazilian public health. Based on the references of the history of the present time and the social studies of science, we argue that two aspects have been fundamental to creating a national policy: framing different illnesses within the terminology "rare diseases" and the construction of a public perception about the right of health which is guaranteed by the 1988 Brazilian Constitution.

En este trabajo se analizan los movimientos de actores e instituciones que llevaron a la promulgación, en 2014, de la Resolución 199 del Ministerio de Salud de Brasil, que establece la Política Nacional de Atención Integral a las Personas con Enfermedades Raras. Tomando como fuentes los principales periódicos, proyectos de ley y bibliografía secundaria sobre el tema, comenzamos nuestro análisis a principios de la década de 1990 con la creación de las primeras asociaciones de pacientes en Brasil, para reclamar fundamentalmente más fondos para la investigación de enfermedades genéticas, y llegamos a fines de la década de 2010 con las negociaciones para una política nacional. La Resolución 199 es parte de un proceso en curso, en el que el camino hacia la promulgación y las complicaciones posteriores nos dan elementos para discutir aspectos actuales de la salud pública brasileña. Sobre la base de la historia del tiempo presente y los estudios sociales de la ciencia, argumentamos que hay dos aspectos que han sido fundamentales para crear una política nacional: enmarcar diferentes enfermedades en la terminología "enfermedades raras" y la construcción de una percepción pública sobre el derecho a la salud, que se garantiza en la Constitución brasileña de 1988.

Nuevos problemas de un nuevo sistema de salud: la creación de una política pública nacional de atención de enfermedades raras en Brasil (1990-2014) / New problems of a new health system: the creation of a national public policy of rare diseases care in Brazil (1990s-2010s)

RESUMEN En este trabajo se analizan los movimientos de actores e instituciones que llevaron a la promulgación, en 2014, de la Resolución 199 del Ministerio de Salud de Brasil, que establece la Política Nacional de Atención Integral a las Personas con Enfermedades Raras. Tomando como fuentes los principales periódicos, proyectos de ley y bibliografía secundaria sobre el tema, comenzamos nuestro análisis a principios de la década de 1990 con la creación de las primeras asociaciones de pacientes en Brasil, para reclamar fundamentalmente más fondos para la investigación de enfermedades genéticas, y llegamos a fines de la década de 2010 con las negociaciones para una política nacional. La Resolución 199 es parte de un proceso en curso, en el que el camino hacia la promulgación y las complicaciones posteriores nos dan elementos para discutir aspectos actuales de la salud pública brasileña. Sobre la base de la historia del tiempo presente y los estudios sociales de la ciencia, argumentamos que hay dos aspectos que han sido fundamentales para crear una política nacional: enmarcar diferentes enfermedades en la terminología "enfermedades raras" y la construcción de una percepción pública sobre el derecho a la salud, que se garantiza en la Constitución brasileña de 1988.

ABSTRACT This study discusses actors and institution movements leading to the disclosure in 2014 of Resolution 199 by the Brazilian Ministry of Health, which establishes the National Policy for the Comprehensive Care of Persons with Rare Diseases. Taking as sources the mainstream newspapers, drafts law, and secondary literature on the subject, we begin our analysis in the early 1990s when the first patient associations were created in Brazil - mainly for claiming more funds for research on genetic diseases - and arrive at the late 2010s when negotiations for a national policy are taking place in the National Congress. Resolution 199 is part of an ongoing process and the path towards its disclosure and the complications that followed have given us elements to discuss contemporary aspects of the Brazilian public health. Based on the references of the history of the present time and the social studies of science, we argue that two aspects have been fundamental to creating a national policy: framing different illnesses within the terminology "rare diseases" and the construction of a public perception about the right of health which is guaranteed by the 1988 Brazilian Constitution.

Communal responsibility: a history of health collectives in Australia.

Healthcare encompasses multiple discourses to which health professionals, researchers, patients, carers and lay individuals contribute. Networks of patients and non-professionals often act collectively to build capacity, enhance access to resources, develop understanding and improve provision of care. This article explores the concept of health collectives and three notable examples that have had an enduring and profound impact in the Australian context.

Group of pregnant women and / or pregnant couples: a collective construction process (1996-2016) / Grupo de gestantes y / o casos embarazados: un procedimiento de construcción colectiva (1996-2016) / Grupo de gestantes e/ou casais grávidos: um processo de construção coletiva (1996-2016)

ABSTRACT Objective: To understand how the process of construction of the Group of Pregnant Women and/or Pregnant Couples of the Federal University of Santa Catarina from 1996 to 2016 was established. Method: Qualitative research of a social historical nature, involving nine health professionals who participated in the group of pregnant women and/or pregnant couples in this period. The date of collection took place between February and May 2017. Data analysis was guided by Orem's Self-Care Theory and Bardin's content analysis technique. Results: The process of construction of the group of pregnant women had strong influence from the public health policies of the University Hospital Maternity and its assistance of the time. Likewise, it was created based on the need for guidance to pregnant women and their companions to deal with the pregnancy-puerperal process with the perspective of a multidisciplinary and integral work, stimulating self-knowledge and self-care. Conclusion: The group emerged as an extension project and strengthened by public health policies, its scientific evidences and by the assistance philosophy of a maternity school. The group building process involved a set of actions, planning and execution of activities, building an educational space, free of charge, with an exchange of mutual experience and open to the community.

RESUMEN Objetivo: Comprender cómo se instituyó el proceso de construcción del Grupo de Gestantes y/ o Parejas embarazadas de la Universidad Federal de Santa Catarina en el período de 1996 a 2016. Método: Investigación cualitativa de naturaleza histórica social, involucrando a nueve profesionales de salud que participaron del grupo de gestantes y/o parejas embarazadas en este período. La recolección de datos ocurrió entre febrero y mayo de 2017. El análisis de datos fue guiado por la Teoría del Autocuidado de Orem y por la técnica de análisis de contenido de Bardin. Resultados: El proceso de construcción del grupo de gestantes tuvo fuerte influencia de las políticas públicas de salud de la época y de la maternidad del Hospital Universitario y su filosofía asistencial. Igualmente, fue creado a partir de la necesidad de orientación a las gestantes y sus acompañantes para lidiar con el proceso gravídico-puerperal con la perspectiva de un trabajo multidisciplinario e integral, estimulando el autoconocimiento y el auto-cuidado. Conclusión: El grupo surgió como un proyecto de extensión fortalecido por políticas públicas de salud, sus evidencias científicas y por la filosofía asistencial de una maternidad-escuela. El proceso de construcción del grupo involucró un conjunto de acciones, planificación y ejecución de actividades construyendo un espacio educativo, gratuito, con intercambio de experiencia mutua y abierta a la comunidad.

RESUMO Objetivo: Compreender como se instituiu o processo de construção do Grupo de Gestantes e/ou Casais Grávidos na Universidade Federal de Santa Catarina, no período de 1996 a 2016. Método: Pesquisa qualitativa de natureza histórico-social, envolvendo nove profissionais de saúde que participaram do grupo de gestantes e/ou casais grávidos neste período. A coleta de dados aconteceu entre fevereiro e maio de 2017. A análise de dados foi guiada pela Teoria do Autocuidado de Orem e pela técnica de análise de conteúdo de Bardin. Resultados: O processo de construção do grupo de gestantes teve forte influência das políticas públicas de saúde da época, da maternidade do Hospital Universitário e sua filosofia assistencial. Igualmente, foi criado a partir da necessidade de orientação às gestantes e seus acompanhantes para lidar com o processo gravídico-puerperal, na perspectiva de um trabalho multidisciplinar e integral estimulando o autoconhecimento e o autocuidado. Conclusão: O grupo surgiu como projeto de extensão fortalecido por políticas públicas de saúde, suas evidências científicas e pela filosofia assistencial de uma maternidade-escola. O processo de construção do grupo envolveu um conjunto de ações, planejamento e execução de atividades construindo um espaço educativo, gratuito, com troca de experiência mútua e aberto a comunidade.

'We Were More Radical back then': Victoria's First Self-Advocacy Organisation for People with Intellectual Disability.

This article is concerned with exploring the historical development of Reinforce, the oldest self-advocacy organisation for people with intellectual disability in Victoria. In particular, it considers how governmental indifference, as well as ad hoc funding and support, has hindered the growth of the organisation and, more generally, the growth of the self-advocacy movement in Victoria. By obtaining a deeper understanding of the input from the policy makers, professionals, and supporters working in the field of intellectual disability, we can begin to comprehend some of the reasons for the comparatively slow development of self-advocacy in this country.

Stigma and the addiction paradigm for obesity: lessons from 1950s America.

AIMS: To discuss an historical episode in which obesity was conceptualized as an addictive disorder and declared to be a major epidemic in the early postwar United States. This history illuminates past consequences of framing obesity as an addiction in ways that may inform constructive policy responses today. METHODS: Review of secondary and primary sources, including archival documents, relating to obesity in biomedical and popular thought of the 1940s and 1950s. RESULTS: In the United States in the late 1940s and 1950s, new medical thinking about obesity reinterpreted overweight and obesity as chiefly the consequence of addiction (understood in the then dominant psychodynamic theory as a psychological defect, oral fixation). This new conception was rapidly taken up in popular discourse and clinical practice, with adverse effects through amplification of weight stigma. Further, in the conservative political context, the addiction concept contributed to an ineffective policy response to the alarming new epidemiological evidence about obesity's consequences. Despite a lack of evidence for efficacy of the intervention, public health efforts focused on correcting individual eating behaviour among obese people by encouraging self-help in lay groups modelled, in part, on Alcoholics Anonymous. Population-level intervention was neglected. CONCLUSIONS: Current public health policy initiatives must be mindful of the risks of reframing obesity as an addiction. These include inadvertently reinforcing stigma, narrowing responses to those aiming to modify individual behaviour and biology and neglecting population policies aiming to reduce the consumption of energy-dense foods, as all occurred in the 1950s United States.

[Identity and social integration: analysis of sociability in a mutual aid society (1902-1933)]. / Identidad e integración social: análisis de la sociabilidad en una sociedad de socorros mutuos (1902-1933).

This article studies the sociability evidenced in the fiestas and other celebrations held by the Breastfeeding Infant Clinic and periodically organized by La Conciliación Mutual Aid Society between 1902 and 1933 as recreational acts with educational purposes. La Conciliación (1902-1984) was founded in Pamplona as an exclusively male Catholic association (women were admitted from 1936) composed of workers, employers and protector members, with labor, healthcare, and economic objectives under a Mixed Board of Governors with representatives from the three cohorts. The description of the events and the analyses of the emotional practices are based on newspaper reports and the association's archives. The acts organized by the Breastfeeding Infant Clinic served to stimulate positive emotions and maternal feelings of piety and charity and to arouse a sense of social utility in the upper social classes. We acknowledge the regulatory component of the emotions that appeared in the fiesta of La Conciliatión: conferences and social events proposed a social model that reinforced the participation of members and their families in the association's ideological and religious goals. The performative character of emotions was designed to reinforce the identity of the members of La Conciliation and their social integration in the city. This model of sociability strengthened the project of La Conciliation.

OutServe: an underground network stands up.

From the perspective of an insider, this article explains how an underground network of actively-serving lesbian, gay, bisexual, and transgender (LGBT) military members was formed, and able to engage in the fight against the Don't Ask, Don't Tell policy. By providing the means to connect with one another within the constraints of the law, OutServe enabled the voices of gay and lesbian active military personnel to be heard. This new visibility informed the political debate surrounding the policy and played a role in the final days of Don't Ask, Don't Tell.

[SOS children: from the beginning to this day S. Godinas et M. Gérard]. / SOS enfants: des origines à nos jours.

Child abuse is a major and critical public health concern. We aim to present the "Abused Children Intervention Program" of the National Office for Childcare, and to delineate the current situation, using our recent experience at the Saint-Pierre's Teaching Hospital in Brussels. The SOS Children teams focus on children protection while providing support for abusing parents. We will notice how a preventive initiative aimed at reducing child abuse can give lead to a specialized structure dealing with abuse situations.

Can religion help prevent obesity? Religious messages and the prevalence of being overweight or obese among Korean women in California.

This research examines the influence of messages from religious leaders and congregants on whether Korean women are overweight or obese. Data were drawn from telephone interviews with a probability sample (N = 591) of women of Korean descent living in California. Overweight or obese prevalence was measured using World Health Organization standards for Asians (BMI > 23). Respondents reported the frequency of messages discouraging "excessive eating" or encouraging "exercise" from religious leaders and congregants during a typical month. When conditioned on leaders' messages, the frequency of congregants' messages was associated with a significantly lower probability of being overweight or obese, although messages from either in the absence of the other were unassociated with being overweight or obese. At least for Korean women, religion may help prevent obesity via religious-based social mechanisms.

A neoliberalisation of civil society? Self-help groups and the labouring class poor in rural South India.

This paper notes the prominence of self-help groups (SHGs) within current anti-poverty policy in India, and analyses the impacts of government- and NGO-backed SHGs in rural North Karnataka. It argues that self-help groups represent a partial neoliberalisation of civil society in that they address poverty through low-cost methods that do not challenge the existing distribution of power and resources between the dominant class and the labouring class poor. It finds that intra-group savings and loans and external loans/subsidies can provide marginal economic and political gains for members of the dominant class and those members of the labouring classes whose insecure employment patterns currently provide above poverty line consumption levels, but provide neither material nor political gains for the labouring class poor. Target-oriented SHG catalysts are inattentive to how the social relations of production reproduce poverty and tend to overlook class relations and socio-economic and political differentiation within and outside of groups, which are subject to interference by dominant class local politicians and landowners.

Unstable networks among women in academe: the legal case of Shyamala Rajender.

Scientific networks are often credited with bringing about institutional change and professional advancement, but less attention has been paid to their instability and occasional failures. In the 1970s optimism among academic women was high as changing US policies on sex discrimination in the workplace, including higher education, seemed to promise equity. Encouraged by colleagues, Shyamala Rajender charged the University of Minnesota with sex discrimination when if failed to consider her for a tenure-track position. The widely cited case of this chemist was not, however, settled easily and involved nearly a decade of university grievance procedures and litigation that grew to a class action lawsuit. As the case gained national attention and internal resistance stiffened, the clusters of women who had been encouraging flickered, faded and sometimes regrouped. A negotiated settlement (consent decree) ended Rajender's case, and it opened the door for hundreds of other to present their grievances regarding gender discrimination. Networks and support groups proved important but also unstable for individuals who sought equity before and during the implementation of the decree. The Rajender case thus exposes the painful, balky and inevitably contentious process of fighting discrimination. It also demonstrates the power and limits of institutions and litigation, as well as the possibilities and disappointments of informal and formal women's networks.

Autism and social movements: French parents' associations and international autistic individuals' organisations.

The aim of this empirical investigation is to analyse the social movements brought about by autism-related issues. It is suggested that both the autism-category changes in the late 1980s, and the development of educational and behavioural methods in the United States, have given rise to a large-scale mobilisation around the changes in the definition of autism and interventions in many countries. The present paper highlights the historical dynamics of the mobilisation of French parents' associations and the engagement of autistic persons' organisations. The role of the French parents' associations has been studied over the last 40 years to show how they have contributed to shaping public policy in France and how they have favoured the American model of autism despite the French professionals' resistance. At the international level, the newly-born associations of autistic individuals have introduced new actors who sometimes reproach the parents' associations for speaking on their behalf. These new associations, such as self-help groups, have a political identity problem. Their members no longer want to be considered as patients but as individuals with a different cognitive mode of functioning. Their actions can be analysed in the broader context of the disability movement. If the disability movement is considered as the latest generation of social movements, the action of autistic persons can be viewed as the latest generation of the disability movements.

Recovery and systems transformation for schizophrenia.

The Recovery Movement, initiated in the 1990s by mental health consumer groups and leaders, has emerged as a major force in the mental health field. This movement has been gaining strength and promises to impact mental health service delivery through innovations in care that other models of care have not offered. Recent efforts to conceptualize and study recovery empirically have bolstered the movement from a scientific standpoint. This article reviews the growing literature regarding recovery, offers a conceptual framework for understanding recovery, and discusses a specific manner in which systems transformation has begun to occur.

Prenatal care: limitations and opportunities.

Prenatal care is a venerable tradition in the U.S. health care system and one that deserves critical examination. Inordinate amounts of public and personal resources are expended on a tradition of care that has not proven itself equal to current perinatal prevention challenges. In this article, the evolution of prenatal care is reviewed, its efficacy is critiqued, and efforts at restructuring the content and processes of care are examined. Three promising alternatives to the dominant medical model are described: the comprehensive prenatal care approach illustrated by many publicly funded prenatal clinics, the prenatal empowerment model as exemplified by midwifery care, and the prenatal group model as illustrated by CenteringPregnancy. Nurses are called upon to champion prenatal options for women.