Chronic Fatigue Syndrome (CFS) is a contested condition that generates scepticism and occupies a marginalised position within medical and social contexts. The thesis examines the illness experiences, and specifically the experiences of self, for people affected with CFS. Using qualitative inquiry, a substantive theory related to the process of self-renewal and adaptation associated with CFS is explicated. The theory encompasses the trajectory of CFS from onset to chronicity, and in exceptional instances, recovery. Illness narratives were derived from in-depth, semi-structured interviews of 19 adults, including 16 people affected with, and 3 people recovered from, CFS. Data was coded and analysed using a grounded theory approach. Analysis generated two parallel narratives that defined the illness experience of CFS: the narrative of the illness biographies and the narrative of self, specifically the struggling and diminished self seeking renewal. The illness biographies encompassed the stories of symptoms and their explanations, the encounters that ensued and their contentious milieu. The narrative of self was the primary narrative. It articulated the negative consequences to self and personhood associated with CFS, named the Violation of Self, and the consequent efforts of participants to decrease the struggle and violation by use of the Guardian Response and the Reconstructing Response. The Guardian Response provided protection and self-reclamation. The Reconstructing Response fostered self-renewal and meaning. The two narratives were bridged by the threats of CFS. That is, the illness biographies were accompanied by threats of disruption related to chronic illness, and by threats of invalidation that arose from CFS as a contested condition. In turn, these threats provided the catalyst to the violation and responses as described in the narrative of self. Under different conditions the relative strengths of violation, guardianship or reconstruction fluctuated, and it was these fluctuations that presented the participants with the ongoing struggle of CFS.

Chronic Fatigue Syndrome (CFS) is a contested condition that generates scepticism and occupies a marginalised position within medical and social contexts. The thesis examines the illness experiences, and specifically the experiences of self, for people affected with CFS. Using qualitative inquiry, a substantive theory related to the process of self-renewal and adaptation associated with CFS is explicated. The theory encompasses the trajectory of CFS from onset to chronicity, and in exceptional instances, recovery. Illness narratives were derived from in-depth, semi-structured interviews of 19 adults, including 16 people affected with, and 3 people recovered from, CFS. Data was coded and analysed using a grounded theory approach. Analysis generated two parallel narratives that defined the illness experience of CFS: the narrative of the illness biographies and the narrative of self, specifically the struggling and diminished self seeking renewal. The illness biographies encompassed the stories of symptoms and their explanations, the encounters that ensued and their contentious milieu. The narrative of self was the primary narrative. It articulated the negative consequences to self and personhood associated with CFS, named the Violation of Self, and the consequent efforts of participants to decrease the struggle and violation by use of the Guardian Response and the Reconstructing Response. The Guardian Response provided protection and self-reclamation. The Reconstructing Response fostered self-renewal and meaning. The two narratives were bridged by the threats of CFS. That is, the illness biographies were accompanied by threats of disruption related to chronic illness, and by threats of invalidation that arose from CFS as a contested condition. In turn, these threats provided the catalyst to the violation and responses as described in the narrative of self. Under different conditions the relative strengths of violation, guardianship or reconstruction fluctuated, and it was these fluctuations that presented the participants with the ongoing struggle of CFS.

No description available.

No description available.

Background and aims: Despite living with a gluten-free diet (GFD) Swedish women with coeliac disease (CD) report a lower level of well-being than women without the disease and men with the disease. The all-embracing aim of the thesis was to study experiences of living with coeliac disease in remission and to discover whether a patient education intervention can influence the perceived health and daily life of women with coeliac disease. Methods: Studies I-IV were based on the same sample, a total population of 106 women, > 20 years old, with confirmed CD, who had been treated with a GFD for a minimum of five years. From the total population of 106, 15 and 14 purposefully selected women were included in studies I and IV respectively, which had a phenomenological approach by which data was collected through recorded personal narrative interviews. The participants in studies II & III, comprising the total sample of 106 women, were randomized to one of two groups: either to the intervention group (n=54) that underwent a ten-session patient education (PE) program with problem based learning (PBL), or to a control group (n=52) that received information regarding CD, which was sent to their home on a regular basis. Data was collected by self-administered questionnaires. Study V included 22 purposefully selected people (11 women and 11 men) with confirmed CD that had experienced any kind of residual discomfort despite treatment for at least five years with a GFD. Data was collected by recorded semistructured interviews. Well-being (II-III) was assessed at baseline and after 10 weeks in all patients and after six months in the intervention group using the Psychological General Well-Being index and the Gastrointestinal Symptom Rating Scale. The interviews (I & IV), which were carried out before the start of the PE (I) and within two weeks of completion of the PE program and about three months after the first interview (IV), were analysed with descriptive phenomenology. The data from study V was analysed by content analysis. Results: In the results, the experience of living with CD in remission was described by participants as a constant quest for a normal life (I, V). Three constituents representing conditions necessary to achieve a normalised lifeworld were described (I) as: being secure, being in control, and being seen and included. The balance of thoughts in relation to these constituents proved to be crucial for the individual woman’s ability to experience a normal life, despite the disease. Participants described (V) conditions facilitating the opportunities to live a normal life, but also various barriers to reaching this goal. The results from the PE based on PBL (II-III) showed that the PE improved psychological well-being (II) and GI (III) in women with CD to some extent, but not sufficiently as the improvement reached normative values for women only at 10 weeks regarding PGWB mean total index, and at no point in time regarding GSRS mean total index. The effect had waned at the follow-up six months after the intervention was completed as regards the women’s psychological well-being. In coping with CD, it seems essential for women to interact with others with the same disease (IV). The interaction made women feel individually strengthened, and provided them with a broader perspective on life with CD. As a result, this strengthened their sense of self in relation to the disease. Knowledge given by other participants and experts could result in both relief and anxiety. The results from the PE based on PBL (II-III) showed that the PE improved psychological well-being (II) and GI (III) in women with CD to some extent, but not sufficiently as the improvement reached normative values for women only at 10 weeks regarding PGWB mean total index, and at no point in time regarding GSRS mean total index. The effect had waned at the follow-up six months after the intervention was completed as regards the women’s psychological well-being. In coping with CD, it seems essential for women to interact with others with the same disease (IV). The interaction made women feel individually strengthened, and provided them with a broader perspective on life with CD. As a result, this strengthened their sense of self in relation to the disease. Knowledge given by other participants and experts could result in both relief and anxiety.

Background and aims: Despite living with a gluten-free diet (GFD) Swedish women with coeliac disease (CD) report a lower level of well-being than women without the disease and than men with the disease. The aims of this thesis were to describe the life experience of being a woman living with CD (I) and to assess the effects of patient education (PE) with problem based learning (PBL) on psychological well-being (II) and gastrointestinal symptoms (III). Subjects and methods: In total 106 women, > 20 years, with confirmed CD, who had been treated with a GFD for a minimum of five years were randomized (II&III) to one of two groups: either to the intervention group (n=54) that underwent a ten-session educational program, called ‘Coeliac School’, with PBL, or to a control group (n=52) that received information regarding CD, which was sent to their home on a regular basis. Assessments: Well-being (II & III) (the Psychological General Well-Being index and the Gastrointestinal Symptom Rating Scale) was assessed at baseline and after 10 weeks in all patients and after 6 months in the intervention group. Individual interviews (I) were carried out with purposefully selected women (n=15) before the start of the‘Coeliac School’. Result: The qualitative study showed that CD can influence women’s lives in different ways. A desire for a normalised life-world was described. Three conditions necessary to achieve a normalised life-world were described as: being secure, being in control and being seen and included. After ten weeks of education, participants in the “Coeliac school” reported a significant improvement in psychological well-being (p=0.001) and gastrointestinal symptoms (p=0.013). The controls did not improve significantly. However, at baseline the controls, for reasons which were not apparent, and despite randomization, expressed significantly better psychological well-being and fewer gastrointestinal symptoms than women in the intervention group. Six months after completion of the PE program some of its positive effect had decreased. Conclusions: A PE with PBL can help women with CD to benefit from a greater degree of well-being. It is important to offer PE to those women who fail to achieve a normalised lifeworld. However, intervention methods need to be refined in order to provide a more pronounced long-term effect.

Submitted by Maria Creuza Silva (mariakreuza@yahoo.com.br) on 2015-07-14T20:44:56Z No. of bitstreams: 1 TESE. Aline Palmeira. 2015.pdf: 1570086 bytes, checksum: da9d5e8fa41e091ee9d3f8fbc8ddcd3d (MD5) / Approved for entry into archive by Maria Creuza Silva (mariakreuza@yahoo.com.br) on 2015-07-14T20:45:40Z (GMT) No. of bitstreams: 1 TESE. Aline Palmeira. 2015.pdf: 1570086 bytes, checksum: da9d5e8fa41e091ee9d3f8fbc8ddcd3d (MD5) / Made available in DSpace on 2015-07-14T20:45:40Z (GMT). No. of bitstreams: 1 TESE. Aline Palmeira. 2015.pdf: 1570086 bytes, checksum: da9d5e8fa41e091ee9d3f8fbc8ddcd3d (MD5) / A dor crônica é considerada um problema de saúde pública pelas inúmeras repercussões que traz para a vida de quem adoece e por seus impactos na sociedade. Os avanços no seu estudo têm confirmado que a dor é um fenômeno de interface entre a biologia e a cultura, configurando-se como um desafio para as ciências médicas, assim como para os estudos em ciências humanas. As pesquisas nesse campo apontam para a multiplicidade de enfoques possíveis no estudo da dor e investigações, cujo foco está naqueles que adoecem, têm favorecido a compreensão desse fenômeno no que diz respeito às inúmeras repercussões que a dor possui para aqueles que adoecem e seu grupo social, assim como chamam atenção para a presença da deslegitimação da dor sentida, para a invisibilidade desse adoecimento e para a dificuldade na construção de sentidos e significados para a dor, para além dos propostos pela Medicina. No Brasil, poucos estudos na perspectiva das Ciências Sociais em Saúde têm sido realizados com o foco nas pessoas que adoeceram por dor crônica e, diante da importância de compreender o que acontece com essas pessoas no contexto da assistência em saúde, buscou-se analisar nesta tese a experiência de dor crônica, ao longo de um determinado período, de pessoas que iniciavam o seu acompanhamento em um serviço especializado no tratamento da dor. A perspectiva longitudinal apresentou-se como importante neste trabalho, ao se considerar os avanços que estudos desse tipo têm proporcionado nas Ciências Sociais e por possibilitar o acompanhamento da organização da experiência de enfermidade a partir da interação com o serviço em questão. Foram realizadas entrevistas narrativas com 11 pessoas que iniciavam o seu tratamento para dor no serviço especializado e um ano após esse acompanhamento. Entre a realização das entrevistas desses dois momentos, foi realizada observação participante e utilizado o registro no diário de campo. A interpretação das narrativas foi baseada na Teoria da Interpretação de Paul Ricoeur, estabelecendo-se uma relação com o texto produzido a partir dos conceitos de distanciação, apropriação, explicação e compreensão. O diário de campo contribuiu com informações que não estivessem presentes nas narrativas, assim como com eventos que ocorreram na situação de interação do participante com a Instituição. Diante da análise dos dados, foram organizados três artigos empíricos, com objetivos distintos, porém complementares. O primeiro artigo teve o objetivo de compreender, transversalmente, a experiência de enfermidade dos participantes que iniciavam o seu acompanhamento no serviço especializado. Entre os principais resultados têm-se a importância da significação da dor na vida de quem adoeceu e o reconhecimento do sofrimento advindo dessa vida com dor, seja pelas mudanças que ela causa (que fazem refletir acerca do valor da vida com dor), seja pela presença da deslegitimação constante do vivido, nas diversas esferas sociais. O segundo artigo teve como objetivo aprofundar a discussão sobre a experiência de enfermidade e sua relação com as expectativas das pessoas frente ao novo tratamento que seria iniciado, ainda em uma abordagem transversal. Os principais achados relacionam-se à importância da relação entre a experiência de dor e a organização das expectativas; ao destaque que a diminuição da intensidade da dor tem, mas que organiza-se em torno da expectativa de cura ou de alívio do sofrimento trazido pela dor; e às diferenças entre o que os participantes esperam encontrar em uma clínica de dor e o que a literatura aponta como possíveis objetivos das clínicas de dor. O último artigo refere-se à experiência de enfermidade dos participantes, na abordagem longitudinal, tendo, como um elemento importante da análise, a interação com o Serviço. Os resultados apontam para a mudança em diversos aspectos na experiência de dor dos participantes, a partir da interação com o Serviço e para a possibilidade de permanência ou desvinculação do tratamento a partir da experiência de dor e da interação ocorrida durante o período analisado. Novos estudos que se dediquem a essa temática, nas Ciências Sociais, tornam-se necessários, tendo em vista as possibilidades de análise por meio do conceito de experiência de enfermidade, pelo reconhecimento das repercussões, do sofrimento e da incomunicabilidade da dor na vida de quem adoeceu, e pelos impactos que um tratamento específico, em uma clínica de dor podem ter para quem tem dor crônica.

Coordenação de Aperfeiçoamento de Pessoal de Nível Superior - CAPES / We all face the experience of pain in a given moment of our lives. More than a “physiological fact”, pain is an “existential fact”. When this pain becomes uninterrupted, it eliminates the structure of our everyday lives, jeopardizes our social relations, is addressed and in being so, affects the others, ceasing to be a private experience and becoming a public one. In an attempt to solve this problem, thousands of people daily resort to medical support and take to the treatment rooms not only their physical complaints, but all the affective, social and subjective repercussion that an illness state causes, and which makes up their health condition. In Brazil, 2,5% of these people are diagnosed with a pathology called fibromyalgia. From the point of view of biomedicine (disease), fibromyalgia is characterized as a syndrome that involves chronic pain in skeletal musculature, which attacks different body regions, being associated to fatigue, sleep disturbances and psychopathological symptoms, like anxiety and depression. However, the symptoms understood this way do not produce identifiable lesions, nor any anatomopathological substrate which evidences the disease and, thereby do not present laboratory parameters to guide both the diagnose and the interventions, forcing doctors to report to clinical parameters given by the patients’ speech. Facing the singularity of human suffering, in opposition to a universal pattern of human functioning. Because of this characteristic, the diagnose of fibromyalgia has been considered controversial and its treatment of difficult handling, since the biomedical model does not offer many tools to deal with the subjective and experiential dimension of the illness. In this work we seek to understand the fibromyalgia, or better what is designated as such by the biomedical knowledge (disease), in the perspective of the diagnosed subjects (illness). Attempting to understand which senses are built from the illness experience and which health care practices develop these subjects. Therefore, privileging the dialogue with the interpretative strand of medical anthropology (GOOD, 1994; 1977; KLEINMAN, 1978; 1980, 1988; YOUNG, 1982), that considers the compound health-disease-care as culturally built and understood, this work was set up as a qualitative approach research, which utilizing the individual narrative interview and active observation as data production techniques, attempted to understand the illness experiences of people diagnosed with fibromyalgia, linked to the University Hospital, in the city of Aracaju, Sergipe. Participated on this research, eight women from whom we tried to get closer, through their narratives, to their daily experiences, the meanings, and the practices of health care intersubjectively built on their processes of illness. The phenomenological aspects of these women’s experiences were constituted from a condition of physical limitations, affective commitments, symbolic violence, which directly impacts their personality, social relations and everyday practical activities, being experienced as a disruptive biographical event. Pain and fatigue placed themselves as fundamental symptoms of these illnesses, being responsible for the loss of work ability and restrictions in life that put them in a situation of greater dependence on the others. A relation which becomes conflictive, insofar as their symptoms are discredited by those with whom they live with and by the health professionals. The pain experience and other symptoms were marked under the sign of invisibility and of delegitimization, given the absence of something concrete to evidence the disease, which made difficult the construction of meanings that are shareable with the others. The suffering, placed in suspicion, produced in the discredited people a stigmatizing experience, generating the lowering of self-esteem, blame, production of depressive affections, which make interviewed women vulnerable to the aggravation of the illness. Under this latter aspect, this work revealed the understanding of gender inequalities as a factor or a context of vulnerability to the illness experiences. Because the gender mandates (PUJAL; MORA, 2014; MORA et al. 2017) for these women caused suffering, firstly against the compliance requirements of a role marked by injustice, and secondly by the lack of conditions of possibility for its realization. In this way, the present work was constituted as an effort to bring light to the experiences which until then were supposed to be of suffering, without, however, knowing under what contexts, circumstances and particularities they are modeled and nuanced. / Todos nós nos defrontamos com a experiência da dor em algum momento de nossas vidas, mais do que um “fato fisiológico” a dor é um “fato da existência”. Quando essa dor se torna ininterrupta, desestrutura nosso cotidiano, compromete nossas relações sociais, é endereçada e assim afeta os outros, ela deixa de ser uma experiência privada e torna-se pública. Na tentativa de solucionar esse problema, milhares de pessoas recorrem diariamente à ajuda médica e levam aos consultórios não somente suas queixas físicas, mas toda repercussão afetiva, social e subjetiva que um estado de adoecimento provoca, e que compõem seu estado de saúde. No Brasil, 2,5% dessas pessoas são diagnosticadas com uma patologia chamada fibromialgia. Do ponto de vista biomédico (disease), a fibromialgia é caracterizada como uma síndrome que envolve dor crônica em musculatura esquelética, que acomete diferentes regiões do corpo, estando associada à fadiga, distúrbios do sono, e sintomas psicopatológicos, como ansiedade e depressão. No entanto, os sintomas assim entendidos não produzem lesões verificáveis, nem algum substrato anatomopatológico que evidencie a doença, e dessa forma não apresentam parâmetros laboratoriais que orientem tanto o diagnóstico quantos as intervenções, obrigando os médicos a se reportarem aos parâmetros clínicos fornecidos pela narrativa dos pacientes. Deparando-se com a singularidade do sofrimento humano, e não mais com um padrão universal de funcionamento humano. Por conta dessa característica, o diagnóstico da fibromialgia tem sido considerado controverso, e seu tratamento de difícil manejo, visto que o modelo biomédico não dispõe de muitas ferramentas para lidar com a dimensão subjetiva e experiencial do adoecimento. No presente trabalho buscamos compreender a fibromialgia, ou melhor aquilo que é designado enquanto tal pelo saber biomédico (disease), na perspectiva dos sujeitos que são diagnosticados (illness). Buscando compreender quais são os sentidos construídos a partir da experiência de adoecimento, e quais práticas de cuidado à saúde desenvolvem esses sujeitos. Dessa maneira, privilegiandoo diálogo com a vertente interpretativa da antropologia médica (GOOD, 1994; 1977; KLEINMAN, 1978; 1980; 1988; YOUNG, 1982), que considera o complexo saúde-doença-cuidado como culturalmente construídos e interpretados, o presente trabalho configurou-se numa pesquisa de abordagem qualitativa, que utilizando a entrevista narrativa individual e observação participante como técnicas de produção de dados, buscou compreender as experiências de enfermidade de pessoas diagnosticadas com fibromialgia, vinculadas ao Hospital Universitário, na cidade de Aracaju, Sergipe. Participaram desta pesquisa oito mulheres, das quais procuramos nos aproximar, através de suas narrativas, de suas experiências cotidianas, dos significados e das práticas de cuidado à saúde intersubjetivamente construídas em seus processos de adoecimento. Os aspectos fenomenológicos das experiências dessas mulheres se constituíram por condições de limitações físicas, comprometimentos afetivos, violência simbólica que impactam diretamente sobre suas identidades, relações sociais e atividades práticas do dia-a-dia, sendo vividos como um evento biográfico disruptivo. As dores e fadiga, colocaram-se como sintomas fundamentais destes adoecimentos, sendo responsáveis pela perda da capacidade laborativa, restrições na vida que as colocaram numa posição de dependência maior em relação ao outro. Relação que passa a ser conflitiva, na medida em que seus sintomas são desacreditados por aqueles com quem convivem e pelos profissionais de saúde. A experiência de dor e outros sintomas foi marcada sob o signo da invisibilidade e da deslegitimação, visto a ausência de algo concreto que pudesse evidenciar a doença, o que dificultou a construção de significados compartilháveis com o outro. O sofrimento colocado em suspeição, produziu nas pessoas desacreditadas uma experiência estigmatizante, gerando o rebaixamento da autoestima, a culpabilização, a produção de afetos depressivos, que vulnerabilizam as mulheres entrevistadas ao agravamento do adoecimento. Sob este último aspecto, revelou-se neste trabalho, o entendimento das desigualdades de gênero, como fator ou contexto de vulnerabilidade para as experiências de adoecimento. Pois os mandatos de gênero (PUJAL; MORA, 2014; MORA et al. 2017) destinados à estas mulheres acarretaram sofrimento, primeiro diante das exigências de cumprimento de um papel marcado pela injustiça e segundo pela falta de condições de possibilidade para sua realização. Dessa forma o presente trabalho constituiu-se num esforço de trazer luz às vivências que até então supunham-se sofridas, sem que no entanto soubéssemos sob quais contextos, circunstâncias e particularidades elas são modeladas e matizadas. / São Cristóvão, SE

Orientador: Ana Maria Canesqui / Dissertação (mestrado) - Universidade Estadual de Campinas, Faculdade de Ciências Médicas / Made available in DSpace on 2018-08-25T23:28:29Z (GMT). No. of bitstreams: 1 Costa_ThaillyFariada_M.pdf: 631673 bytes, checksum: 8285bbbd218739debdedd7fb44d3d59f (MD5) Previous issue date: 2014 / Resumo: Este estudo insere-se na abordagem socioantropológica para analisar o significado atribuído à experiência do paciente com câncer de submeter-se ao tratamento quimioterápico, assim como as representações da enfermidade que a permeiam. A representação social e a experiência foram articuladas, uma vez que, representar e vivenciar a enfermidade leva-se em consideração sensações percebidas que são interpretadas pelos adoecidos. A investigação é pertinente devido à importância epidemiológica do câncer que se constitui problema de saúde pública e à escassez de pesquisas sobre as enfermidades crônicas na área de Antropologia e Saúde. Foi empregada a metodologia qualitativa na perspectiva socioantropológica, combinando as técnicas do relato oral, da observação em campo (residências, serviços de saúde) e da entrevista para coletar as informações sobre as quais se procedeu a análise de conteúdo temática. A análise foi feita usando-se os conceitos de experiência e representações sociais para compreender os sentidos e significados da doença, os tratamentos e a experiência do paciente e as ações empreendidas da doença e dos tratamentos. A seleção dos casos foi realizada guiando-se pelos critérios de analisar os aspectos da experiência com a doença e com o tratamento quimioterápico na perspectiva de cada gênero e pela disponibilidade de relato dos depoentes. Os dados foram agrupados em categorias temáticas para cada caso, analisando-se os seguintes aspectos: a descoberta da doença e as representações sociais do câncer; os itinerários terapêuticos; experiência com a doença e o tratamento quimioterápico; estratégias de enfrentamento e apoios recebidos. Conclui-se neste estudo, que o adoecimento por câncer consiste em um processo complexo que concilia experiência e representações entre as quais se estabelece uma complementação integrada para compreender a enfermidade do ponto de visto dos adoecidos. O adoecimento por câncer suscita ao indivíduo e sua família medos e incertezas diante do futuro, uma vez que, a representação da doença está ligada ao estigma, à morte e aos questionamentos sobre a sua origem. Diante das inúmeras mudanças que acontecem na vida dos adoecidos e de pessoas próximas a eles, após a descoberta do câncer, os enfermos buscam estratégias para lidar com a nova realidade. A análise dos casos permitiu a compreensão das diferenças de gênero existentes nos relatos dos entrevistados, principalmente as formas de lidar com a doença e as mudanças corporais que surgiram após a cirurgia e os efeitos colaterais da quimioterapia. Os estudos de caso mostraram a dimensão da experiência do adoecimento por câncer que apresentam impactos relevantes na vida dos enfermos, levando às mudanças no cotidiano e modificando planos / Abstract: This study is part of the anthropological approach to analyze the meaning attributed to the experience of the patient to undergo chemotherapy, as well as representations of illness that pervade cancer. The social representation and experience were articulated since, representing and experiencing the illness takes into account perceived sensations that are interpreted by the diseased. The research is relevant due to the epidemiological importance of cancer that constitutes a public health problem and the paucity of research on chronic diseases in the field of Anthropology and Health was used qualitative methodology in social anthropological perspective, combining the techniques of the oral report, the field observation (households, health services) and interview to collect information on which they proceeded to thematic content analysis. The analysis was done using the concepts of social representations and experience to understand the meanings of the disease, treatments and patient experience and the actions undertaken the disease and treatments. The selection of cases was made up by guiding criteria to analyze aspects of the experience with the disease and chemotherapy in the perspective of each gender and the availability of interviewees reporting. Data were grouped into thematic categories for each case by analyzing the following aspects: the discovery of the disease and the social representations of cancer; therapeutic itineraries; experience with the disease and chemotherapy, coping strategies and support received. It was concluded in this study that the disease cancer is a complex process that combines experience and representations between which establishes an integrated complement to understand the disease of vision of the diseased . Falling ill with cancer raises the individual and his family fears and uncertainties about the future, since the representation of the disease is linked to stigma, death and questions about its origin. Given the many changes happening in the lives of diseased and those close to them, after the discovery of cancer, the sick seek strategies to deal with the new reality. The analysis of the cases allowed the understanding of gender differences in the interviewees, especially the ways of dealing with illness and bodily changes that arose after the surgery and the side effects of chemotherapy. The case study showed the dimension of the experience of suffering from cancer that have significant impacts on the lives of sick, leading to changes in daily life and changing plans / Mestrado / Ciências Sociais em Saúde / Mestra em Saúde Coletiva

Cette thèse interroge les images dans le parcours de soin de femmes touchées par un cancer du sein. Nous questionnons de façon spécifique les images ayant trait à la chirurgie curative du cancer du sein, images représentant la transformation du corps de la femme. Notre objectif est de comprendre les usages des images dans la consultation chirurgicale et de saisir leur interaction avec l’expérience de la maladie vécue par les patientes. Nous nous appuyons sur l’approche des représentations sociales pour appréhender la notion d’image selon deux acceptions. D’une part, l’image renvoie à l’iconographie ; ce qui nous intéresse alors est l’objectivation graphique, forme d’objectivation qui ne passe pas par les discours mais par la transformation des idées en entités concrètes dans des objets graphiques réels, comme l’iconographie circulant dans différents contextes. D’autre part, la notion d’image nous sert à désigner la dimension figurative des représentations sociales. Sous cette signification, l’image renvoie à l’aspect concret des représentations sociales, issu du processus d’objectivation. Ces deux acceptions de la notion d’image sont mises en lien avec la dimension expérientielle et les processus de genèse et de transformation des représentations sociales. Les méthodes d’enquête que nous avons mises en place sont qualitatives et s’inscrivent dans des lieux de soin. Nous nous appuyons sur un plan méthodologique reposant sur le principe de la triangulation des méthodes, qui permet d’atteindre différentes facettes de l’objet, dans différents contextes. Dans notre étude, la méthode d’observation de consultations chirurgicales est éclairée par des entretiens et focus groups avec des patientes.Les observations de consultations permettent de relever les types d’images utilisés dans ce contexte et les usages qui en sont faits : photographies et schémas sont principalement employés pour représenter la chirurgie du cancer du sein, chaque type d’image mettant en scène le corps selon des caractéristiques singulières. Si les patientes commentent peu ces images au cours des consultations, entretiens et focus groups nous donnent accès à leur perspective : photographies et schémas n’entrent pas en interaction de la même manière avec l’expérience des patientes et ne renvoient pas aux mêmes univers représentationnels. / This thesis questions the images in the treatment of breast cancer. More particularly, we question the images related to breast cancer curative surgery representing the transformation of the woman body. Our objective is to understand the use of the images in surgical consultation and to seize their interaction with the experience of the disease by the patients. We rely on the approach of social representations to comprehend the concept of image according to two different acceptances. On the one hand, the image refers to iconography; therefore, what interests us is the graphical objectification, which does not imply speeches but the transformation of ideas into concrete entities in real graphical objects such as the iconography available in different contexts. On the other hand, the concept of image is used to refer to the figurative aspect of social representations. Under this meaning, the image refers to the concrete aspect of social representations emanating from the objectification process. These two acceptances of the concept of image are linked to the experience dimension and to the genesis and transformation processes of social representations. We used qualitative investigating methods and worked in care centers. Our methodology is based on triangulation, which enabled us to assess different aspects of the object in different contexts. The method used to observe surgical consultations in our study was enlightened by interviews and focus groups held with patients.The consultation observations enabled us to highlight the types of images used in this context and how they are used: photographs and schemas are mainly used to represent breast cancer surgery as each type of image shows the body according to specific features. While the patients do not comment much these images during the consultations, they make more comments during interviews and focus groups, showing us their perspectives: photographs and schemas do not interact the same way with the experience of the patients, and do not refer to the same representational spheres.