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Instituto de Saúde Coletiva / A judicialização da política de medicamentos oncológicos de alto custo, fruto da complexidade da vida e das relações humanas, suscita questões de ordem econômica, social e política, que efluem de uma cadeia de eventos que envolvem o cidadão, o sistema de saúde e o sistema de justiça, no contexto da microjustiça de medicamentos oncológicos de alto custo, que, por sua vez, perpassa todas as etapas sucessórias de um contencioso, ou seja, desde o início do conflito, o manejo, até o seu desfecho, mobilizando diversos protagonistas que agem e deliberam, em uma dinâmica consecutiva de decisões que impactam diretamente e determinam o cuidado produzido com o cidadão-vulnerado. Neste sentido, tornou-se relevante a operacionalização de uma pesquisa que procurasse desvelar, compreender e contrastar as distintas percepções, sentidos, argumentos e modos de agir, dos diversos protagonistas envolvidos nesses litígios, bem como as suas intencionalidades e contribuições para a defesa da vida e para a promoção de um cuidado resolutivo em saúde. O objetivo geral deste estudo foi investigar a ideia de cuidado estabelecido com o cidadão-vulnerado, na perspectiva dos representantes do Judiciário e do Executivo, à luz da biopolítica, para compreender a dinâmica entre a política da vida e a política sobre a vida, e, entre a biopotência e o biopoder, que se expressam na microjustiça de medicamentos. Os participantes dessa pesquisa são profissionais, do sistema de justiça ou do sistema de saúde, envolvidos, direta ou indiretamente, nos cinco processos-casos selecionados entre os anos 2012 e 2014, julgados em segunda instância pelo Tribunal de Justiça do Rio de Janeiro, cujo pleito era medicamentos oncológicos de alto custo. A operacionalização desta investigação contou com três etapas distintas e sucessivas: a exploração inicial dos argumentos processuais, categorizando as partes de acordo com a afinidade argumentativa, através da dialética, para a elaboração e personalização do roteiro de entrevista; o trabalho de campo, com a aplicação do roteiro para entrevista semiestruturada junto aos participantes; e, a apresentação dos resultados, análise e discussão, que integra, metodologicamente, a dialética, a análise da retórica, o fluxograma descritor e a abordagem qualitativa em profundidade. De acordo com os resultados, observa-se a adoção de distintos parâmetros éticos, contrários ou complementares, tais como os parâmetros de uma ética biomédica, centrada na medicalização; uma ética de mercado, centrada na mercantilização da doença ou da vida; uma ética utilitarista, centrada na maximização do bem-estar comum; ou, propriamente, uma ética de cuidado, centrada na defesa da vida e do direito à saúde; os quais fundamentam a argumentação e orientam o agir deliberativo dos protagonistas envolvidos, podendo promover a potência da vida pelo exercício de uma política em defesa da vida, quando o cuidado produzido é reconhecidamente resolutivo, expressando um compromisso ético com a vida qualificada; ou, podendo promover a potência de morte pelo exercício de uma política sobre a vida, quando, em defesa de interesses avessos a um cuidado singular, os atos resultam em uma assistência insatisfatória e ineficiente ou, na pior das hipóteses, resultam em desassistência, acelerando ou contribuindo para a finitude da vida. Deste modo, conclui-se que todo cuidado é ético, pois toda a ação dos envolvidos, comprometidos com o cuidado, é orientada por parâmetros éticos, mas nem todo cuidado é reconhecido como ético, pois pode resultar na satisfação de interesses divergentes aos propostos nos pactos de cuidados estabelecidos entre os profissionais e o cidadão / The judicialization of politics of high cost oncological drugs, result of the complexity of life and human relations, raises issues of an economic, social and political order, which emanate from a chain of events involving the citizen, the health system and the justice system, in the context of the microjustice of high cost oncological drugs, which, in turn, runs through all successive stages of a litigation, that is, from the beginning of the conflict, handling, until its denouement, mobilizing several protagonists who act and deliberate, in a consecutive dynamics of decisions that directly impact and determine the care produced with the vulnerable citizen. In this sense, it became relevant to operationalize a research that seeks to unveil, understand and contrast the different perceptions, meanings, arguments and ways of acting, the various protagonists involved in these health litigations, as well as their intentions and contributions for the defense of life and for the promotion of resolutive health care. The general objective of this study was to investigate the idea of care established with the vulnerable citizen, from the perspective of the representatives of the Judiciary and the Executive, in the light of biopolitics, to understand the dynamics between politics of life and politics about life, and, between biopotency and biopower, which are expressed in the microjustice of drugs (medicines). The participants in this research are professionals, the justice system or the health system, involved, directly or indirectly, in the five lawsuits-cases selected between the years 2012 and 2014, judged in the second instance by the Court of Justice of Rio de Janeiro, whose demand was high cost oncology drugs. The operation of this investigation had three distinct and successive stages: the initial exploration of arguments of lawsuits, categorizing the parts according to argumentative affinity, through the dialectic, for the elaboration and personalization of the interview script; the fieldwork, with the application of the script for semi-structured interview with the participants; and, the presentation of results, analysis and discussion, which integrates, methodologically, the dialectic, rhetorical analysis, descriptive flowchart and qualitative approach in depth. According to the results, it is observed the adoption of different ethical parameters, contraries or complementary, such as the parameters of a biomedical ethics, centered in the medicalization; an ethics of market, centered on the commodification of disease or life; a utilitarian ethics, centered on the maximization of the common welfare; or, properly, an ethics of care, centered on the defense of life and the right to health; which ground the argument and guide the deliberative action of the protagonists involved, being able to promote the power of life by the exercise of a policy in defense of life, when the care produced is recognized as resolutive, expressing an ethical commitment to a qualified life; or, by promoting the power of death through the exercise of a politics about life, when, in defense of interests that are averse to singular care, the acts result in unsatisfactory and inefficient care or, at worst, result in lack of assistance, accelerating or contributing to the finitude of life. That way, it is concluded that all care is ethical, since all the action of those involved, committed to care, is guided by ethical parameters, but not all care is recognized as ethical, as it can result in the satisfaction of interests divergent from those proposed in the pacts of care established between professionals and the citizen

I denna vetenskapliga essä kommer jag att undersöka begreppet omsorg. Uppsatsen är skriven i essäform och har en hermeneutisk ansats. Min essä inleds med tre berättelser hämtade från mitt yrkesliv där jag varit delaktig som pedagog. I dessa situationer synliggörs dilemman kring hur omsorgsbegreppet kan tolkas och omsättas i förskolans praktik. Syftet med essän är att undersöka på vilka sätt omsorgsbegreppet kan förstås inom förskolan. Uppsatsens frågeställningar är: Hur kan begreppet omsorg förstås mot bakgrund av att relationen mellan barn och pedagog i förskolan är asymmetrisk Vilka faktorer kan påverka pedagogers meningsskapande av omsorgsbegreppet? samt Hur kan pedagogers meningsskapande av omsorgsbegreppet förstås i relation till rådande diskurser i förskola och samhälle? I min reflektion använder jag litteratur för att ställa frågeställningarna och berättelsen i relation till samtida diskurser gällande barnsyn, ålder, kön och genus. Jag undersöker begreppet omsorg utifrån Nel Noddings omsorgsetik. Min slutsats är att pedagogernas meningsskapande av omsorg har ett nära samband med diskurser i samtiden och förskolan. Utifrån ett omsorgsetiskt perspektiv anser jag att pedagogernas ansvar för relationen och omsorgen i omsorgssituationer är större än det talas om i förskolesammanhang idag. / This scientific thesis is written in the form of an essay in which I will inquire into the concept of care. The thesis is written in form of an essay and has a hermeneutic onset. My essay takes a starting point in three stories taken from my professional life where I had been involved as a pedagogue. In these situations the dilemma becomes visible about how the care concept can be interpreted and translated into pre-school practice. The essay’s questions are: How can the concept of care be understood in the light of the fact that the relationship between children and pedagogue is asymmetrical? What factors can affect the perception of the pedagogues of the concept of care? and How can educators' perception of the concept of care be understood in relation to current discourses in preschool and society?  In my reflection I use literature and my stories to set the questions in relation to contemporary discourses current to childcare, age, sex and gender. I will inquire into the concept of care from using Nel Noddings’ ethics of care. My conclusion is that pedagogue’s perceptions of care are closely linked to contemporary and pre-school discourses. From an ethics of care point of view, I consider that pedagogue’s responsibility for relationship and care in care situations is larger than it is spoken of in pre-school context today.

This thesis investigates the construction of the therapist-client alliance in the therapeutic setting with perpetrators of intimate partner violence (IPV). Moreover, it explores the ways a Feminist Ethics of Care perspective could enhance the partnership between the actors. To fulfil such aims, the author conducted six in-depth semi-structured interviews with psychologists working at one of the most renowned institutions for perpetrators of IPV in Norway and Sweden. The analysis of the psychologists' discourses demonstrates that several factors are influential in the alliance construction. The most important aspects are: the clients' perspective towards the psychologists; the therapists' views towards the clients; the psychologists' engagement with moral sentiments; the power struggle between the actors; and the use of techniques for the professionals to enhance their connection with the clients. Besides that, the discourses also show that moral superiority seems to guide the psychologists when relating with the perpetrators. Their views are embedded in an individualistic ethics based on the principles of Kohlberg's Ethics of Justice. The thesis suggests that a collective ethics such as Gilligan's Feminist Ethics of Care would enhance the partnership between the actors. This theoretical framework allows the psychologists to change their superior moral views of the clients to a moral responsibility towards them. When such movement in perspective happens, the therapists begin to see the perpetrators as human beings with many different facets. Consequently, they truly deny a judgmental impression towards their identity.

La thématique de recherche est d’analyser les tenants et les aboutissants du mythe moderne de santé parfaite via les démarches socio-anthropologique, philosophique et théologico-religieuse, afin de saisir sa problématique éthique. Examiner les transformations des pratiques thérapeutiques a demandé de retranscrire d’abord, sous un mode théorique, les principes qui sont aux fondements de l’exigence sanitaire pour étudier ensuite des expériences ad hoc. Aussi, supposé incarner cette idéologie, le dépistage systématique néonatal de la mucoviscidose relié aux centres de suivi génétique a été la base empirique d’un questionnement éthique spécifique, comme la responsabilité de l’homme face à la vulnérabilité et à la finitude humaine. Orientée par une éthique de la parole suggérant la création d’espaces de réflexion d’où émane une pensée créative, le concept de rite de passage - doté de sa dynamique d’accompagnement - apporte des indications sur la fonction d’une éthique du soin déterminée. / The topic of research is to analyze the ins and outs of modern myth of perfect health through socio-anthropological approaches, philosophical and theological-religious to grasp its ethical problems. Examining changes in treatment practices needed to transcribe first, from a theoretical mode, the principles are the foundations of sanitary requirement then consider ad hoc experiments. Also supposed to embody this ideology, systematic neonatal screening for cystic fibrosis related centers of genetic monitoring was the empirical basis for an ethical questioning sui generis, as the responsibility of the man facing the vulnerability and human finitude. Guided by an ethic of speech suggesting ultimately creating spaces for reflection where creative thinking follows the concept of “rite of passage" - with its accompanying dynamics - provides indications on reality based an ethic of care determined.

Married women in the banking and management consulting firms in Nigeria encounter challenges that affect their commitment to their families while working long hours in demanding jobs. This study explores the challenges married women encounter and the impacts they have on women’s family lives, social lives, and health. I analyze primary and secondary sources to understand how organizational work culture such as long working hours, work competitiveness, and Nigeria’s unstable economy negatively affect the work-life balance of married women in banking and management consulting firms. Although participants shared the belief that their workplaces practiced “equality,” their descriptions of daily life activities indicate that women did not enjoy egalitarian conditions at work or at home. This study brings to light the challenges faced by married women and suggests how the Nigerian government can promote gender equality in the workplace through the review and amendment of the Nigerian Labor policy.

Depuis le début des années 2000 se développe une littérature enjoignant les professionnels au contact des malades d'Alzheimer à "personnaliser" leur prise en charge. Derrière ce terme se cache en réalité une véritable injonction à l'humanisation dans le cadre d'une relation où cette dimension semble faire défaut. Ce qui est demandé au personnel médical et paramédical, c'est un engagement véritable et authentique auprès de cette population. Ce qui est visé, c'est un contrôle des émotions et de leur manifestation.Cette thèse interroge la mise en pratique de la "personnalisation" au sein des unités Alzheimer en EHPAD. S'appuyant sur une démarche qui s'inspire des enquêtes interactionnistes, cette recherche montre non seulement la banalité de l'"engagement" dans ce type d'univers, mais également la complexité de sa mise en oeuvre.Dans la perspective des études sur le care, un travail souterrain, qui reste le souvent invisible, consiste à faire en sorte que la vie de l'étage soit possible pour l'ensemble des individus en présence. C'est cette intelligence de la situation qui conduit, d'un côté, à éloigner le risque de la réification et, de l'autre, à prévenir l'épuisement professionnel.Bien loin de la rhétorique de la "bonne distance professionnelle", l'enquête montre que l'activité des soignants s'articule autour d'un subtil dosage entre engagement et distanciation, pour reprendre la proposition d'Elias (1956). Les émotions sont tout à la fois une nécessité dans le cadre de la réalisation des tâches qui incombent aux professionnels, et une source de danger qu'il faut parfois savoir mettre à distance.L'univers des unités Alzheimer est marqué par un poids relativement important de la régulation autonome par rapport à la régulation de contrôle, pour reprendre la terminologie de Reynaud (2004). Les velléités de formalisation achoppent face au caractère fondamentalement insaisissable et local du care. / In France, since early 2000s spreads a literature inviting professionals in contact with people suffering from Alzheimer disease to "personalize" the way they take care of them. This term refers to a humanization that seems to fade away in this particular context. What is asked to medical and paramedical staff, is a true and authentic commitment toward these patients. What is aimed, is a control of emotions and the way they are expressed.This Ph.D explores the way in which "personalization" is practically accomplished in the context of Alzheimer’s Special Care Units. Based on interviews and observations, it shows the banality of "commitment", and also the complexity of it’s execution. From the ethics of care perspective, an invisible work makes life possible for every protagonist living in that kind of environment. This cleverness of the situation drives away the danger of reification, and prevents burnout.Far from the chimerical "professional distance", this field work shows an articulation between commitment and detachment (Elias, 1956). Emotions appears to be a necessity in order to carry out the tasks, but also a danger that requires to be put away. Thus, Alzheimer’s units are characterized by the relative importance of autonomous regulation, in comparison with control regulation (Reynaud, 2004) : formalization process struggle due to the elusive and local nature of the ethics of care.

Der Begriff Care wird im deutschsprachigen Raum zumeist mit Sorge, Fürsorge, fürsorglicher Praxis oder Sorgearbeit übersetzt. Als gemeinsamer Bezugspunkt theoretischer Konzeptionen kann gelten, dass Care eine spezifische Logik der Relationalität aufweist. Care fungiert in wissenschaftlichen, philosophischen und politischen Kontexten als sensibilisierendes Konzept zur Kategorisierung von Sorge sowie als Analyseinstrument, das auf die Kritik der geschlechtshierarchischen Arbeitsteilung und der kapitalistischen Produktionsverhältnisse gerichtet ist. Empirische Forschungsvorhaben zu Care weisen in ihren Fragestellungen häufig einen expliziten Bezug zur Geschlechterforschung auf.

Ce projet examine comment la politique et l’amitié sont actualisées dans la fiction spéculative du XXIe siècle à travers différents médias. Cette thèse aborde la manière dont ces relations interpersonnelles affectent la sphère sociale et le statu quo des mondes fictifs à l’étude. Pour orienter la discussion, j’utilise le concept d’autonomie relationnelle qui reconnaît l’interdépendance des individus autonomes et de la communauté en général et l’éthique du care qui environne la moralité comme étant relationnelle et contextualisée. L’utilisation conjointe de ces deux cadres me permet de discuter de la façon dont les amitiés sont propices à la participation politique. Le premier chapitre présente une discussion globale de The Handmaid’s Tale (1985) de Margaret Atwood et notamment de son influence au sein du genre de la fiction spéculative féministe. Ensuite, dans une première section, je me concentre sur les notions d’autonomie par rapport à l’adaptation graphique du roman d’Atwood par Renée Nault (2019), que je compare avec la bande dessinée Bitch Planet de Kelly Sue DeConnick et Valentine de Landro (2013-2017). Dans une seconde section, je me concentre sur l’éthique du care en tant que processus pouvant favoriser des amitiés empreintes d’implications politiques en analysant l’adaptation télévisée de The Handmaid’s Tale, produite par Hulu, et la série Orphan Black, produite par BBC America. La fiction spéculative permet d’expérimenter librement avec différentes idées politiques et de comprendre comment la société pourrait réagir dans des scénarios extrêmes. Ces expériences de pensée reflètent nos propres luttes et lacunes politiques et pourraient ultimement indiquer de meilleures façons de résoudre les problèmes actuels. / This project examines how politics and friendship are actualized in speculative fiction across different media in the twenty-first century. This thesis discusses how these interpersonal relationships affect the social sphere and the status quo of the fictional worlds in question. To guide the discussion, I use the concept of relational autonomy, which recognizes the interconnectedness of both autonomous individuals and the community at large, and ethics of care, which understands morality as relational and contextualized. I use these two frameworks in tandem to discuss how friendships are conducive to political participation. The first chapter presents an overarching discussion of Margaret Atwood's The Handmaid's Tale (1985) in its legacy to the feminist speculative fiction genre. Following, in the first section, I focus on notions of autonomy in relation to Renée Nault's graphic novel adaptation of Atwood’s novel (2019) and contrast it with Kelly Sue DeConnick and Valentine de Landro’s comic Bitch Planet (2013-2017). In the second section, I focus on the ethics of care as a process that can foster friendships with political implications by analyzing Hulu's TV adaptation of The Handmaid's Tale and BBC America's Orphan Black. SF offers the freedom to test different political ideas and to understand how society might react in extreme scenarios. These thought experiments reflect our own political struggles and shortcomings; ultimately, they might point at better ways to solve current problems.

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[ES] La presente tesis doctoral aborda la relación existente entre teoría del cuidado y práctica artística. La desigualdad en las labores reproductivas y de mantenimiento con relación al género ha sido puesta en evidencia desde la década de 1970. A partir de la reclamación de la importancia de este tipo de trabajo, y de su posición central en las estructuras sociales, surge la ética del cuidado, pensamiento que se desarrolla especialmente en el ámbito filosófico y político. La investigación llevada a cabo pone de manifiesto que existe una fuerte influencia del pensamiento y las prácticas del cuidado en la creación artística del siglo XXI, especialmente en la zona del sur de Europa. Para abordar esta conexión se plantea un estudio dirigido a profesionales en España, Francia, Portugal e Italia, siendo los ámbitos profesionales objeto de estudio, los relacionados con el comisariado y la gestión cultural, las instituciones culturales y, por último, artistas y colectivos de artistas. Las respuestas obtenidas sobre prácticas laborales con relación al cuidado han sido analizadas y contextualizadas. Asimismo, se estudian y analizan diferentes casos paradigmáticos que presentan una notable vinculación con las prácticas del cuidado como son el Centro HUARTE en España, la bienal Manifesta 12 en Italia o el trabajo de la artista Céline Condorelli en Francia, entre otros. A partir de los mismos se constata que la influencia de la teoría del cuidado desempeña un protagonismo relevante en el ámbito artístico desde la década de 2010. Se aborda también el papel de los comunes urbanos como espacios de generación de infraestructuras de cuidado y los puntos esenciales que definen una estética del cuidado. Finalmente, se concluye que se confirma la hipótesis planteada y se realiza una clasificación de las orientaciones temáticas que el cuidado adopta en el ámbito expositivo contemporáneo. / [CA] La present tesi doctoral aborda la relació existent entre teoria de la cura i pràctica artística. La desigualtat en les labors reproductives i de manteniment en relació amb el gènere ha sigut posada en evidència des de la dècada de 1970. A partir de la reclamació de la importància d'aquesta mena de treball, i de la seua posició central en les estructures socials, sorgeix l'ètica de la cura, pensament que es desenvolupa especialment en l'àmbit filosòfic i polític. La investigació duta a terme posa de manifest que existeix una forta influència del pensament i les pràctiques de la cura en la creació artística del segle XXI, especialment en la zona del sud d'Europa. Per a abordar aquesta connexió es planteja un estudi dirigit a professionals a Espanya, França, Portugal i Itàlia, sent els àmbits professionals objecte d'estudi, els relacionats amb el comissariat i la gestió cultural, les institucions culturals i, finalment, artistes i col·lectius d'artistes. Les respostes obtingudes sobre pràctiques laborals en relació amb la cura han sigut analitzades i contextualitzades. Així mateix, s'estudien i analitzen diferents casos paradigmàtics que presenten una notable vinculació amb les pràctiques de la cura com són el Centre HUARTE a Espanya, la biennal Manifesta 12 a Itàlia o el treball de l'artista Céline Condorelli a França, entre altres. A partir dels mateixos es constata que la influència de la teoria de la cura exerceix un protagonisme rellevant en l'àmbit artístic des de la dècada de 2010. S'aborda també el paper dels comuns urbans com a espais de generació d'infraestructures de cura i els punts essencials que defineixen una estètica de la cura. Finalment, es conclou que es confirma la hipòtesi plantejada i es realitza una classificació de les orientacions temàtiques que la cura adopta en l'àmbit expositiu contemporani. / [EN] This thesis addresses the relationship between care theory and artistic practice. Since the 1970s, inequality in reproductive and maintenance tasks in relation to gender has been highlighted. The ethics of care arises from the claim of the importance of this type of work, and its central position in social structures, it is a thought that is developed especially in a philosophical and political field. The research carried out shows that there is a strong influence of care thinking and practices on the artistic creation of the 21st century, especially in southern Europe. To address this connection, a study aimed at professionals in Spain, France, Portugal and Italy is proposed. The professional fields under study are those related to curating and cultural management, cultural institutions and, finally, artists and artist collectives. The responses obtained on work practices in relation to care have been analysed and contextualized. Likewise, different paradigmatic cases that present a notable connection with care practices are studied, such as the HUARTE Center in Spain, the Manifesta 12 biennial in Italy or the work of the artist Céline Condorelli in France, among others. From these cases it is confirmed that the influence of care theory has played a relevant role in the artistic field since the 2010s. It is also addressed the role of urban commons as spaces generating care infrastructures and essential points that define an aesthetics of care. Finally, it is concluded that the proposed hypothesis is confirmed, in addition to a thematic classification of the ways in which care is adopted in the contemporary exhibition field. / Ferriols Montañana, A. (2024). Teoría del cuidado en el arte del siglo XXI. Propuestas de creación artística y gestión cultural en el sur de Europa durante el periodo 2000-2023 [Tesis doctoral]. Universitat Politècnica de València. https://doi.org/10.4995/Thesis/10251/203127