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Previous issue date: 2015-01-16 / This study is composed of two empirical studies, having as goals to get to know and to analyze the histories of black women with sickle-cell disease, and also to understand how their subjectivity is built and it is confronted from the meaning of the disease originates in the black ancestry. This research is exploratory, descriptive, with a qualitative design. Data collection was performed using semi-structured interviews, explored with the help of Critical Discourse Analysis. We studied 9 self-declared black women with sickle-cell disease, and who were assisted by the Sickle-Cell Reference Center of Porto Alegre?s Clinical Hospital (CRAF). The first study aims to get to know and to analyze the access of black women with sickle-cell disease to public health policies from the search of health care for issues produced by sickle-cell disease. The second study aims to get to know and to analyze the history of black women with sickle-cell disease, and to understand how their subjectivity is built and confronted from subjective senses associated with markers of gender, race and social class. The results showed that the psychosocial impact of sickle-cell disease significantly depends on services and health policies, on the access to technologies related to the disease, and on the meanings that subjects associated with their disease. We observed that the therapeutic itinerary of women has been proven to be a constant process of search for care, which was built in the relations of women?s families and some professionals, up to the time when Brazil?s Public Health System (SUS) started to offer, even partially, specialized attention and care to this health condition. The therapeutic route was submitted to the relations established by social, health, and cultural inequities, and very little by principles of public policies. Institutional racism, present in all black women?s approaches in society, answers to the historical vulnerability that makes black women invisible. Sickle-cell disease, according to black women, is a health condition that keeps subjective senses marked by the intersectionality of race, gender, and social class. On the same direction, women have shown that the illness experience, though, intense, debilitating, and deep, did not keep them away from their constructions of gender; on the contrary, the complexity of the disease provided an opportunity in which they could build themselves as subjects of possibilities. / A disserta??o ora apresentada se constitui de dois estudos emp?ricos com a proposta de conhecer e analisar a hist?ria de mulheres negras com doen?a falciforme e compreender como a subjetividade destas ? constru?da e confrontada a partir do significado da doen?a que tem origem na ancestralidade negra. A pesquisa teve delineamento qualitativo e se caracterizou como explorat?ria-descritiva, onde a coleta das informa??es ocorreu atrav?s de entrevistas semi estruturadas que foram exploradas atrav?s da An?lise Cr?tica do Discurso. Participaram 9 mulheres com diagn?stico de doen?a falciforme, auto declaradas negras e atendidas pelo Centro de Refer?ncia da Anemia Falciforme do Hospital de Cl?nicas de Porto Alegre (CRAF). O primeiro estudo procurou conhecer e analisar o acesso das mulheres negras com doen?a falciforme ?s pol?ticas p?blicas de sa?de a partir dos itiner?rios terap?uticos na busca por cuidados para as quest?es de sa?de produzidas pela doen?a falciforme. E o segundo, buscou conhecer e analisar a hist?ria de mulheres negras com doen?a falciforme e compreender como a subjetividade destas ? constru?da e confrontada a partir dos sentidos subjetivos associados aos marcadores de g?nero, ra?a e classe social. Os resultados demonstram que o impacto psicossocial da doen?a falciforme depende expressivamente dos servi?os e das pol?ticas de sa?de, no acesso ?s tecnologias referentes ? doen?a para dirimir o processo de adoecimento, bem como do significado que o sujeito associa a sua doen?a. Observamos que o itiner?rio terap?utico das mulheres se revelou como um processo constante de busca pelo cuidado que foi constru?do nas articula??es dos familiares das mulheres e de alguns profissionais, at? o momento em que o Sistema ?nico de Sa?de (SUS) passou a ofertar, mesmo que parcialmente, aten??o e cuidado ? condi??o de sa?de diferenciada. O percurso terap?utico se submeteu ?s rela??es estabelecidas pelas iniquidades culturais, sociais e em sa?de, e muito pouco por preceitos das pol?ticas p?blicas. O racismo institucional, presente em todas as aproxima??es das mulheres negras na sociedade, responde ? vulnerabilidade hist?rica que invisibiliza as mulheres negras. A doen?a falciforme, segundo as mulheres negras, ? uma condi??o de sa?de que guarda sentidos subjetivos demarcados pela interseccionalidade de ra?a, g?nero e classe social. Na mesma dire??o, as mulheres demonstraram que a experi?ncia do adoecimento, embora, intensa, incapacitante e profunda, n?o as afastou das suas constru??es de g?nero, ao contr?rio, a complexidade da doen?a oportunizou que elas pudessem se construir como sujeitos de possibilidades.
| Identifer | oai:union.ndltd.org:IBICT/oai:tede2.pucrs.br:tede/6147 |
| Date | 16 January 2015 |
| Creators | Xavier, Eliana Costa |
| Contributors | Rocha, K?tia Bones |
| Publisher | Pontif?cia Universidade Cat?lica do Rio Grande do Sul, Programa de P?s-Gradua??o em Psicologia, PUCRS, Brasil, Faculdade de Psicologia |
| Source Sets | IBICT Brazilian ETDs |
| Language | Portuguese |
| Detected Language | English |
| Type | info:eu-repo/semantics/publishedVersion, info:eu-repo/semantics/masterThesis |
| Format | application/pdf |
| Source | reponame:Biblioteca Digital de Teses e Dissertações da PUC_RS, instname:Pontifícia Universidade Católica do Rio Grande do Sul, instacron:PUC_RS |
| Rights | info:eu-repo/semantics/openAccess |
| Relation | 2588426296948062698, 600, 600, 600, 2599381623216554467, 3411867255817377423 |
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