“Doença que não tem cura, é para o resto da vida”: etnografando a experiência de mulheres mães de crianças com doença falciforme no estado da Paraíba

Abstract

This dissertation aims at presenting the ethnographic research developed in the Master Degree in Anthropology. The goal of this study is to understand the experience of disease and care among mothers of children with Sickle Cell Anemia (SCA) who access the Newborn Screening Service in the Ambulatório do Complexo Pediátrico Arlinda Marques (Ambulatory of the Arlinda Marques Pediatric Complex) in the city of João Pessoa, State of Paraíba, Brazil. Some reflections are brought on how mothers face the illness of their children, focusing on the attitudes held by each of them as “mother of a child with SCA.” One needs to understand how they develop caregiving attitudes toward their children, and reflect about how these mothers give meanings both to the experience of the children‟s disease and the care for them. Zago (2004) points out that in Brazil, according to the World Health Organization (WHO), SCA is the most common genetic disease, still poorly understood, that affects more acutely the Afro-descendant and dark-skinned (parda) populations – the poorest part of the society. Regarding to the literature on the mentioned disease, Silva (2013), Ramalho (2007), Neves (2014; 2015), Diniz (2005; 2006), and Zago (2001, 2004) have shown that people affected by SCA or with Sickle Cell Trait (SCT) are engaged in a daily struggle to get treatment, medication, assistance and respect. One of the most important contributions of this work is to bring out a little information on what these women are facing, because there is no exposure of how they are dealing with that disease, or how they walk a long journey in search of knowledge about the topic. The record of everything that leads to transformations in these women‟s way of life has been brought here, because the discovery of the disease shocks them. This reality has been perceived during the fieldwork, and it gives information about the impacts of SCA on the lives of these women who discover themselves as mothers of children with hemoglobinopathy. Thus, the information obtained may contribute to the developmen public policies to improve the care provided to the SCA patients and their relatives.