Anemia falciforme e triagem neonatal : o significado da prevenção para as mulheres cuidadoras

AUTOR(ES)
DATA DE PUBLICAÇÃO

2009

RESUMO

Newborn screening programs were created by the end of the 1950s and since then were widespread through several countries as an important tool for controlling morbidity and mortality caused by diagnosable and treatable diseases. Women play a central role in newborn screening, since care and adhesion to the child treatment depends on them. The goal of this thesis was to identify the meaning of prevention and its corollaries in newborn screening for sickle-cell anemia, according to women who take care of children with this disease. The methodological strategy was to perform in-depth surveys with fifty women whose children had been diagnosed with sickle-cell anemia and started being treated by the Newborn Screening Program of the Federal District. The women were interviewed in their houses, following a semistructured set of questions, which were recorded and subsequently transcribed. Sickle-cell anemia was chosen for this research due to its ethical, social and epidemiological specificities in Brazil. The data analysis was based on the use of techniques and methods of Grounded Theory. The research project was submitted to and approved by a Research Ethics Committee and complied with the recommendations on the Resolution 196/96. The research outcomes revealed that the meaning of sickle-cell anemia for the female caregivers is shaped by the experience of caregiving and the relations established with health workers, family members and the society. The process of meaning construction follows three stages: the discovery of the diagnosis; the first meaning attributed to the disease due to the medicalization of childrens condition; and the re-signification of the disease, which takes place after the first clinical manifestations. The meaning of sickle-cell anemia is also bound to the ethical and social impacts of the diagnosis and treatment on the womens lives, such as the need to make the diagnosis public, the need to stop working and the prejudice faced in the public space. As to the reproductive issues, women make their choices according to cultural expectations and the personal or the spouses wish to enlarge the family. Womens accounts expressing the meaning of sickle-cell anemia are woven with reference to the experience of caregiving, the medicalization process and the disputes between biomedical and lay knowledge, which try to control the social life of those women and children.

ASSUNTO(S)

risk informação genética anemia falciforme women ciencias da saude newborn screening risco sickle cell anemia triagem neonatal genetic information mulheres

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