"Essa anemiazinha": experiências de pais/responsáveis por crianças e adolescentes com a doença falciforme

Abstract

This paper aims to analyze the experience of the disease by parents and guardians of children and adolescents with sickle cell disease, members of the Paraibana Association of Hereditary Anemia Patients (ASPPAH). Its methodology began with a literature review on sickle cell disease, health studies in the social sciences and research that takes into account the experience of the disease. The field research was conducted with the qualitative approach with semi-structured interviews with 5 mothers, 1 father and 1 aunt. The product of these interviews allowed the understanding of care and difficulties in the public and private health systems, driven by the lack of knowledge of the disease. As preliminary results: mothers' lack of knowledge of the disease or/and unknown sickle cell trait they carry, therefore only discovering that they have the trait after the birth of their first daughter or son. These observations indicate a lack of information about the disease, as well as misdiagnosis, as the toe test proved ineffective in some situations.