O impacto do diagnóstico: a implicação da doença falciforme para o contexto familiar

Abstract

This qualitative study attempts to understand the impact of sickle-cell disease diagnosis in the context of family. This is the most common genetic disease in Brazil, with a high prevalence and morbimortality rate due to several complications, being considered as a public health problem. Since 2001 there is the neonatal screening for hemoglobinopathies, aiming for a precocious treatment and reduction of morbimortality and complications. In this study were realized semi-structures interviews with 12 mothers/caretakers, whose children had received the diagnosis through the neonatal screening and were being aided in the Pediatric Hematology Sector of University Hospital Cassiano Antônio de Moraes Hucam/UFES, in Vitória, Espírito Santo State. The interviewed group was characterizes as having a low social and economic level and prevailing families in which there isnt a father. A significant number of children had already been interned and /or exhibited signs and symptoms of the disease. Based on the reports of these mothers/caretakers we noticed the sickle-cell disease diagnosis is an important moment to the family, which is marked by suffering, frustration, anxiety and fear. As a result, we noticed: a strong influence by social and economics factors on the familys reaction, especially the financial overload; the absence of the father participation on the childs treatment; the initial difficulty in understanding the diagnosis due to the influence of the invisibility of the disease, the association of the sickle-cell disease with syndromes and mental illnesses, favored by the lack of popular knowledge on them. It was also ascertained that the mother/caretakers suffering is intensified by the childs pain, by the fear of an inadequate assistance to the child and by the fear of death. It was observed that the support given by religion and by the health professionals was a facilitator of facing the disease. It is important to highlight that written informative material and Health Education meetings in the hematology sector strongly contributed to the understanding of the disease by the family. We noticed that, in general, it wasnt emphasized by the mothers the genetic characteristic of the disease and how the diagnosis was given by the health professionals. There wasnt a report on community, groups or associations support. We conclude for the importance of the organization of groups support, for the presentation of written material. We suggest the conduction of campaigns for popular elucidation about the disease, aiming prevention, popular support and to show knowledge to attenuate the impact of the disease over the family, and as a way of minimizing the problems related to the psychosocial aspects of the diagnostic ascertaining.