Invisibility of black women with sickle cell disease and their care itineraries in public health: a qualitative approach

Abstract

Analyzing the care pathways for black women with sickle cell disease requires that the historical-cultural process in which they develop be made explicit. With the aim of understanding and analyzing the access of these black women to public health policies, this study investigated how markers of race, gender, and social class intersected in their therapeutic pathways. Nine black women with sickle cell disease participated in the study, and their interviews were explored through critical discourse analysis. The Boomerang pathway revealed intersectional movements in access to care for sickle cell disease and health inequities in the analytical axes. In health care, the diagnosis of the disease was relevant, but it did not guarantee care by health services. The care possibilities outlined by black women were permeated by institutional racism, the great challenge in offering equitable and quality health care. Care for sickle cell disease must consider all the specificities that affect the care process for black women with sickle cell disease and consider elements demarcated by race and social class. The women's statements illustrated racism, a fundamental element that has historically constituted the asymmetrical power relations in Brazilian society that have made black women invisible in public health.