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DECONSTRUCTING WOMEN AND ENSURING LIFE: Trajectories in facing breast cancer in Brazil and in Germany Inaugural Dissertation to obtain the doctoral degree in Sociology Philosophical Faculty of Social Sciences University of Augsburg and to obtain the doctoral degree in Psychology Faculty of Psychology Pontifical Catholic University of Minas Gerais submitted by Maristela Júlia Fernandes 2020 Advisor I: Prof. Dr. Reiner Keller Chair of Sociology - University of Augsburg Advisor II: Prof. Dr. Luciana Kind do Nascimento Chair of Psychology - Pontifical Catholic University of Minas Gerais Thesis defense: August, 4Th , 2020 Members of the Examination Committee: Prof. Dr. Reiner Keller (Universität Augsburg, German Chair, 1st examiner) Prof. Dr. Luciana Kind do Nascimento (PUC, Minas Gerais, Brazilian Chair, 2nd examiner) Prof. Dr. Werner Schneider (Universität Augsburg,3rd examiner) Prof. Dr. Hella von Unger (LMU München, 4th examiner) Prof. Dr. Carolina Maria Mota Santos (PUC, Minas Gerais, 5th examiner) Prof. Dr. Laura Vilela e Souza (Universität São Paulo, 6th examiner) Rating: Magna cum Laude I dedicate this work to all my beloved ones who have struggled against cancer — sometimes winning the battle, and other times persisting until the end. ACKNOWLEDGEMENTS I am grateful for the gift of life, and for the choices that I have so far been able to make in order to get here! I have a special warmth for my origins, and my great-great- grandparents and great-grandparents, who moved to Brazil from the European continent at the start of the 1900s. These relatives chose an adventure to the new world, to work in farming or in the emerging industries, and here met Native Brazilians and the newly freed African slaves. From this intermingling of peoples, my grandparents’ and parents’ generations emerged, followed by my own and my daughter’s generations. I am happy and privileged to spring from this union between races, and a love that surpasses, eternally and respectfully, coming together with the art of human coexistence. Along the way, our family changed their forms of social insertion, and some went from factory laborers to intellectuals and self-employed professionals. However, we have remained united in cherishing dignity and the different parts that each of us play, ensuring human existence on this planet. To my dear ones, my greatest gratitude — especially for the values cultivated within our families. I owe special thanks to my dear Professor Luciana Kind, for the warmth with which she took me in for my doctoral degree in Psychology at PUC Minas. And to the esteemed Professor Reiner Keller, from the University of Augsburg, whose intellectual contribution brought an important change in the direction of my research. I also need to register my gratitude to those who were important at different stages of this work: In Brazil, my thanks to the team at Cetus Oncologia — in name of Dr. Charles de Pádua, and of nurse Ana Carolina Campos. In addition, a special thanks to all the women who made time to participate in this study. In Germany, I am grateful to the team at the Kaufbeuren Hospital, in name of Dr. Marianne Mayer and nurse Manuela Merz. And, besides the women who took part in this study, I also thank Lisa Hötzl for accompanying me on each of the interviews as my German language research assistant. To the DAAD (Deutscher Akademischer Austauschdienst) — the German Academic Exchange Service — my immense gratitude for the vital financial assistance, offered by means of a study grant. Last, but not least, I’d like to thank my husband Heiner Kruessmann for helping me every day, and for his great encouragement of my work. And thanks to both Juliana Spink Mills, for the translation to English, and Aline Gabriela de Oliveira, for her attention to the technical norms. “(...) Maria, Maria Is the sound, is the color, is the sweat Is the higher and slower dosage Of people who laugh things off When they are supposed to be crying And end up not living, simply enduring But you must be strong You must persist You must be determined, always Those who wear the marks on their bodies Maria, Maria Mix pain and joy But you must be smart You must have grace You must always dream Those who wear the marks on their skin Have the strange habit Of believing in life (…)” (Fernando Brant & Milton Nascimento) RESUMO A pesquisa é um estudo qualitativo, do qual participaram 15 mulheres brasileiras (entre 35 e 65 anos) e 12 mulheres alemãs (entre 50 e 81 anos), todas passando pelos tratamentos do câncer de mama; cujo diagnóstico tivera sido obtido dentre 6 e 24 meses, na ocasião em que uma entrevista única foi feita com cada uma delas. A questão central da pesquisa foi: Quais são os principais desafios encontrados pelas mulheres brasileiras e pelas alemãs mediante a descoberta e os tratamentos do câncer de mama? Os objetivos foram fazer comparações internas dentre os dois públicos pesquisados, e depois comparações externas, envolvendo as experiências das mulheres de ambos os países, com o adoecimento. Os resultados encontrados no estudo, que adotou a Teoria Fundamentada nos Dados como ferramenta teórico- metodológica, discorreram sobre as diferenças para obtenção do diagnóstico – que no Brasil foi majoritariamente buscado a partir do momento no qual as mulheres fizeram o autoexame das mamas, e identificaram por si mesmas alguma alteração; e na Alemanha, quando elas atenderam à carta convite, do Seguro de Saúde, para fazerem a mamografia de rastreamento. A revelação da doença também foi investigada, e os estigmas do câncer de mama se revelaram maiores para as alemãs do que para as brasileiras adoecidas. Outro fator de destaque foram as diferenças dentre os tratamentos prescritos, sendo que no Brasil todas as mulheres passaram pelas quimioterapias, e somente duas delas receberam as radioterapias. Já na Alemanha, todas as mulheres passaram pelas radioterapias, e somente um terço das entrevistadas receberam as prescrições médicas para as quimioterapias. Além disso, diferentes posicionamentos – no que se refere às identidades, conforme o interacionismo simbólico, e em consonância com a Psicologia Social – , foram encontrados no estudo, e são discutidos no trabalho, que foi divido em três partes. Por fim, considera-se que alguns posicionamentos das mulheres de ambos os países, trouxeram para elas ganhos, e certa diminuição do sofrimento; quando elas conseguiram uma transcendência do próprio self, autoaceitação, e uma assimilação que transpôs o eu, para além da identificação com à doença. Entretanto, outros posicionamentos trouxeram prejuízos, e aderência ao sofrimento - especialmente quando o self não se adequou à nova realidade das perdas físicas e/ou psicológicas. Palavras-chave: Câncer de Mama. Teoria Fundamentada nos Dados. Experiências. Identidade. Psicologia Social. ABSTRACT This research is a qualitative study, in which 15 Brazilian women (between 35 and 65 years of age) participated, as well as 12 German women (between 50 and 81 years), all of whom were undergoing breast cancer treatment; the diagnosis of which had been obtained between 6 and 24 months prior to the occasion when a single interview was carried out with each one. The central question of this research was: What are the main challenges met by the Brazilian and German women when facing the discovery and treatment of breast cancer? The goals were to carry out internal comparisons regarding illness among the women from each country, and later external comparisons, involving the experiences of the women in both countries. The results found in the study, which adopted Grounded Theory as a theoretical-methodological tool, discuss the differences in obtaining diagnoses — which in Brazil were, for the most part, sought after the women carried out self-examinations of the breasts, identifying alterations themselves; and in Germany, after answering the Health Insurance invitation letter for a screening mammogram. The moment of sharing news of the disease was also investigated, with the sick German women exhibiting more stigma regarding breast cancer than the Brazilian women. Another key factor was the difference between prescribed treatments, as in Brazil all the women went through chemotherapy, with only two receiving radiotherapy. In Germany, on the other hand, all the women went through radiotherapy, with only a third of interviewees receiving a medical referral for chemotherapy. Additionally, different positioning was found in the study in terms of identity, according to symbolic interactionism, and relating to Social Psychology; these are discussed in the work, which is divided into three parts. Finally, it is considered that certain positionings of the women in both countries brought them gains, and diminished suffering up to a point; this occurred when they managed to transcend their own self, with self-acceptance, and an assimilation that carried the self beyond identification with the disease. However, other positionings were detrimental, bringing an attachment to suffering — especially when the self-did not adapt to the new reality of physical and/or psychological losses. Keywords: Breast Cancer. Grounded Theory. Experiences. Identity. Social Psychology. ZUSAMMENFASSUNG Die Studie umfasst eine qualitative Forschung, an der 15 brasilianische Frauen (zwischen 35 und 65 Jahren) und 12 deutsche Frauen (zwischen 50 und 81 Jahren) teilnahmen. Alle Frauen hatten sich einer Brustkrebsbehandlung unterzogen und ihre Diagnosen waren - zum Zeitpunkt der Führung eines einzigen Interviews mit jeder Einzelnen