The internet has revolutionized the way people are able to seek information and express themselves. Many fields have been dramatically impacted by its occurrence and the health field is no exception. It is becoming increasingly popular to participate in online discussion forums centered on health-related topics. The goal of this research is to describe participants' experience of using an on-line forum focused on Chordoma, a rare form of cancer. Analysis of free-response questionnaires filled out by members of the forum, revealed four key themes: (a) the forum is a source of invaluable information, (b) the forum is a source for emotional support and hope, (c) members share a unique bond that often results in friendship, and (d) members' involvement changes over time. Benefits obtained by the users and implications for medical professionals are discussed. / Master of Science

Ce travail de recherche s'inscrit en sciences de l'information et de la communication et s'intéresse à l'émotion dans la recherche d'information à travers l'exemple des forums de santé. Le succès de ces dispositifs résulte d'une motivation informationnelle et émotionnelle des participants qui peuvent accéder à des témoignages, des informations ponctuelles ou encore des informations médicales filtrées par le vécu du malade (ou du proche de malade) qui s'exprime. Les messages sont donc souvent empreints d'émotion. La problématique s'attache aux évolutions de l'activité d'information et notamment au rôle que peuvent jouer les marqueurs d'émotion dans la structuration des informations mais également lors de leur évaluation. Une première analyse vise à mettre en évidence l'organisation des messages et des indices d'émotion grâce à une analyse de corpus (de fils de discussion provenant de différents forums de santé). Une seconde enquête s'attache à l'analyse de données recueillies pendant une phase d'entretiens et d'expérimentations sur l'utilisation des forums de santé et sur la manière dont les participants évaluent les informations. Les résultats montrent que les informations médicales sont très présentes et majoritairement entremêlées d'indices d'émotion de peur. Toutefois, la joie est l'émotion la plus présente dans l'ensemble du corpus. Enfin, si les marqueurs d'émotion sont des critères d'évaluation, il apparaît que les informations médicales sont également des indices d'évaluation et non les informations évaluées. / This thesis has been carried out in the field of information and communication sciences and focuses on emotion in information retrieval in health fora. The success of these systems results from an informational and emotional motivation from the participants who can access testimonials, punctual information or medical information filtered through the experience of the patients who are writing. The messages often have emotional content. This thesis focuses on developments in information activities and especially on the role that emotional has in the structuring and evaluation of information. The aim of the first analysis is to highlight the organization of messages and their emotional content through a corpus analysis (from different threads of different French-language health fora). A second study focuses on the analysis of data collected during some interviews regarding the use of health fora and the way in which participants evaluate information. The results show that medical information is very present and mostly interspersed with emotion of fear. However, the joy is the emotion mostly present in all the collected corpus. Finally, if the evaluation criteria markers are emotion, it appears that medical information are also evaluation criteria and not the information evaluated.

Submitted by Filipe dos Santos (fsantos@pucsp.br) on 2017-10-19T12:01:03Z No. of bitstreams: 1 Luíza Moreira Grisolia.pdf: 1595190 bytes, checksum: 83615c11d340ba8f1c0ab988352c1623 (MD5) / Made available in DSpace on 2017-10-19T12:01:03Z (GMT). No. of bitstreams: 1 Luíza Moreira Grisolia.pdf: 1595190 bytes, checksum: 83615c11d340ba8f1c0ab988352c1623 (MD5) Previous issue date: 2017-10-02 / Coordenação de Aperfeiçoamento de Pessoal de Nível Superior - CAPES / The present study proposes to analyze the health forum as a device for the creation of healthcare networks, in conjunction with the idea of production of the commons, hereby understood, alike with Espinosa, as everything that results from the gathering of people who establish multiple and equivalent mannerisms and whose effect is the increase of potential in each one. The health forums are organizational arrangements that bring together health professionals from different departments to debate and negotiate strategies for building Brazil’s publicly funded healthcare system (SUS), as well as critical analysis of health practices within itself and joint networks. By setting itself up as a border place in public policy, the aforementioned instrument, bears the potential to promote democratic ways of doing / thinking about health. The research was conducted from observant participation in a health forum in the Northern Zone of São Paulo, Brazil, with the sole purpose of analyzing how the sociability experimentation, the production of the commons and the collective construction of creative strategies operate inside the device. The main theme of the discussion forum is the Psychosocial Attention Network, which aims to create links between the basic healthcare devices, mental health, hospitals, amongst other areas beyond the healthcare network. All the collected material (themes, dialogues, affections) has been kept in a field diary, highlighting the concrete ways of establishing relationships in this collective space. The said material has been analyzed from the institutional review perspective, in the form of themes and critical events. It has been later presented in the form of construe scenes, emphasizing the affections and power relations which surround the attendants. Based on the theoretical recovery of network concepts and the production of the commons, and with the assistance of authors such as Espinosa, Negri and Teixeira, we speculate the place of the health forum in the framing of SUS. We also indicate the forum as a boundary between the inside and the outside, the public and the private, a place of displacement of senses, in which it is possible to identify community areas which provide creative solutions for the healthcare creation / O presente estudo propõe analisar o fórum de saúde como um dispositivo de construção das redes de saúde, em diálogo com a noção de produção do comum, aqui entendida, com Espinosa, como tudo aquilo que se produz no encontro entre pessoas que estabelecem formas múltiplas e mútuas de afetação e cujo efeito é o aumento de potência de cada um. Os fóruns de saúde são arranjos organizativos que reúnem profissionais de saúde de diferentes serviços para o debate e negociação de estratégias de construção do Sistema Único de Saúde (SUS), de análise crítica das práticas de saúde e de articulação de redes. Tal dispositivo, por se configurar como um lugar de fronteira na política pública, carrega a potência de produzir modos democráticos de fazer/pensar saúde. A pesquisa foi realizada a partir da participação observante em um fórum de saúde da Zona Norte do município de São Paulo, com o objetivo de analisar como opera no espaço do Fórum a experimentação de sociabilidade, a produção do comum e a construção coletiva de estratégias criativas. A temática do fórum é a Rede de Atenção Psicossocial, que visa a articulação de redes entre equipamentos da atenção básica, saúde mental, hospitais e outros setores para além da saúde. O material colhido (temas, diálogos, afetos) foi registrado em diário de campo, destacando os modos concretos de relação que se estabelecem neste espaço coletivo. O material foi analisado na perspectiva da análise institucional, na forma de eixos temáticos e de eventos críticos. Posteriormente, foi apresentado na forma de cenas analisadoras, evidenciando as afetações e relações de poder que circulam entre os participantes. A partir da retomada teórica dos conceitos de rede e de produção do comum, com aportes de autores como Espinosa, Negri e Teixeira, refletimos sobre o lugar do fórum de saúde na construção do SUS. Apontamos para o fórum como lugar de fronteira entre o dentro e o fora, entre o público e o privado, lugar de deslocamento de sentidos, nos quais é possível identificar zonas de comunidade que propiciam soluções criativas para a construção do cuidado em saúde