Abstract
Background: The article seeks to explore motherhood experiences of women with sickle cell disease (SCD) and sickle cell trait in Brazil, highlighting intersections between race, gender, and health. The study aims to understand how these women experience motherhood, the challenges they face, and the care strategies they develop.
Methods: The research was qualitative and used the ethnographic method, with fieldwork conducted at a Hemocenter and a Polyclinic in the state of Pernambuco, in addition to semi-structured interviews with 13 women with Sickle Cell Disease.
Results: Identification of the challenges faced by women with Sickle Cell Disease and Trait who wish to become mothers. Description of public policies for the assistance of women with sickle cell disease in Brazil. Identification of racism as one of the main obstacles they face in accessing care during pregnancy and living with a chronic illness.
Discussion: Motherhood for women with Sickle Cell Disease and sickle cell trait is marked by additional challenges due to the genetic condition. Mothers of children with Sickle Cell Disease face greater social pressure and need to reorganize their lives to meet their children's health needs. The research highlights neglect and institutional racism present in health services, which negatively impact access to adequate treatments and increase risks during the pregnancy of women with SCD.
Conclusion: Motherhood experienced by women with sickle cell disease and mothers of people with sickle cell disease is intertwined with aspects of racial and gender inequality in Brazil. These women's experiences reveal the need for an intersectional approach to understand the multiple forms of motherhood. The lack of adequate assistance policies and institutional racism are significant obstacles these women face. The research suggests that, with proper follow-up, it is possible for women with SCD to be mothers, but it is necessary to ensure access to quality information and care.