Experiência de adoecimento crônico : adultos que (con)vivem com anemia falciforme

Abstract

The study examined the experience of adults with sickle cell disease (SCD) addressed in the first person and how chronic illness. This genetic disease is common in Brazil and in the world, being more frequent in people of African descent. Address the experience of chronic mean look at the guy (con) lives with a condition that accompanies it everywhere. Data were collected using the technique of oral accounts through interviews guided by a semi structured along the four men and four women sickened beyond 4 family (their mothers) present during the interviews. The information gathered these objective data to characterize the subjects and their context, as well as non-verbal data observations and informal conversations recorded in a field diary and were treated according to thematic analysis. The most significant results are presented in two manuscripts composing the dissertation. The first deals with the explanation of the concept, causation, symptoms and daily confrontations expressed by the diseased and the latter is a case study showing the complexity of the experience in their uniqueness. Among the complications of sickle cell anemia have shown some common, such as the use of metaphors to conceptualize it, the pain and the wounds are chronic and require daily management and demanding the demand for health services, as well as jaundice potentially stigmatizing. Nevertheless, each case presents peculiarities by singularities biographical idiosyncrasies. Late diagnosis was unanimous and can be understood, in part, by the absence of neonatal screening for early detection of sickle cell anemia in the state, but there are other specific tests that upon clinical suspicion may be requested, however refers to the preparation of health professionals. Although it affects anyone, it is recognized that the most affected segments appear to be historically and socially excluded, it can not be ignored that the illness experience can be even more painful in the face of social inequality (including the race) in the Brazilian society. Therefore, it is pertinent to preparation of focusing policies when it comes to historically unequal contexts, so that you can ensure access of all citizens to the benefits of universal health policies.