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In Sierra Leone, motherhood is being transformed into a moral career for women with sickle cell disorders. This qualitative participatory study, conducted in 2018, involved thirty-six semi-structured interviews with female care-givers and women with sickle cell disorders. Mothers argued that medical models of disease, combined with caring practices, are means to morally manage ideas of 'spoiled identity' and rethink the sick role, disability and life-outcomes of a potentially serious condition. Mothers encourage their children with sickle cell to stay in education as a route to access formal employment and careers that will not tax their bodies and ensure reproductive timing. Education and employment are framed temporally to ensure a delay so that girls can develop caring relationships and access motherhood safely. Understanding and encouraging the development of motherhood as a moral career, involving embodied hyper-vigilant caring practices, is valuable for the self-identity of mothers, allowing them to see a future for themselves and their children. [ABSTRACT FROM AUTHOR]

Background: Sickle cell disease (SCD) is common in Sierra Leone although its exact prevalence, incidence and clinical spectrum are unknown. Methods: Using a statistical package, StatsDirect (Altrincham, United Kingdom) we analyzed the demographic characteristics, presentations, acute events, treatments and clinical outcomes in a cohort of SCD patients attending sickle cell clinics in Freetown, Sierra Leone between February 2007 and August 2010. Results: There were 446 patients, median age of 13 years. Of these, 435 were homozygotes (HbSS), median age 13 years also. There were 248 females, median age 12.5 and 198 males, median age 14, resulting in a male:female ratio of 0.79. Eleven (2.4%) were Sickle Cell-HbC disease, median age 14 years. Patients demonstrated many of the typical features of SCD. The most common reason for hospital admission was bone pain crisis associated with an infection, followed by severe anemia. Aseptic necrosis of the femoral head, leg ulcers, septic osteomyelitis and gallstones were seen in 0.22% of patients, but strokes and acute chest syndrome were not observed. The death rate was 2.51/100 patient years observation with an estimated mean survival of 3.6 years (CI 3.2-3.7). Severe anemia was implicated in the death of 8 patients (50%), whereas only 2 deaths (12.5%) were attributable to bone pain crisis. One death (6.25%) was associated with pregnancy complicated by severe anemia and another with an adverse blood transfusion event. Conclusion: The clinical outcomes in this series highlight the need for a more comprehensive provision of care for SCD patients in Sierra Leone. [ABSTRACT FROM AUTHOR]

Most research on sickle cell disorders has tended to be gender-blind. This qualitative study undertaken in 2018, explores if and how sickle cell disorders become gendered in Sierra Leone through the analytical framework of a feminist ethics of care. It argues that women have to navigate moral blame when they have children with the condition. At the same time women refashion moral boundaries so that gendered norms around childhood and parenting for such children become suspended, in favour of creation of careful spaces. Parental fears of physical and sexual violence mean that gendered sexual norms are enforced for teenage boys as they are encouraged into early adulthood. In contrast, girls are kept in enforced ignorance about the consequences of sickle cell for reproduction and are encouraged to delay motherhood. This is because, as women relate, relationships and giving birth are fraught with embodied dangers and risks of violence. • Using a feminist ethics of care analysis, examines how sickle cell disorders become gendered. • Professionals act as caring pioneers to stop mothers being blamed for children with the condition. • As children, gendered norms for girls and boys are suspended in favour of careful spaces. • Parental fears of effects of violence mean girls and boys socialised differently into adulthood. • Policy neglect and male standard in practice leads to lack of reproductive justice and violence. [ABSTRACT FROM AUTHOR]