“You have to find a caring man, like your father!” gendering sickle cell and refashioning women's moral boundaries in Sierra Leone

Abstract

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.

“It Is Not Easy”: Cultural Influences of Sickle Cell Disease Management in Rural, Eastern Sierra Leone

“…Our study confirms findings by Berghs, Dyson and colleagues (2020) that SCD management falls on the shoulders of women. Stigma and potential harm from their husbands (and their families) loomed over female participants in a context where it is considered to be a woman’s obligation to ensure their child’s health.…”

“…Moreover, there are sociocultural factors associated with understanding and managing SCD in other sub-Saharan African countries that could be similar to those in Sierra Leone. Although what is known about SCD management in Sierra Leone suggests that the burden of care falls on the women in the family (Berghs, Dyson et al, 2020;Berghs et al, 2019), a more scoping perspective of these influences is needed; therefore, the purpose of this article is to describe the cultural factors influencing SCD management in the context of rural Sierra Leone from the perspectives of individuals, families, and health care professionals. Dutta (2008) acknowledges the development of culturally centered health care interventions require the exploration of the cultural norms, traditions, and beliefs which influence health seeking behaviors.…”

“…As is the case in many African LMICs, health care infrastructure and finance problems have hindered the development of a national screening program in Sierra Leone (Italia & Kirolos, 2019). Efforts to strengthen the health care system following the Sierra Leonean civil war and the 2014 to 2016 Ebola crisis have not addressed SCD as a national health policy issue despite the introduction of a free maternal/child preventive health care program (Berghs et al, 2019; Ministry of Health and Sanitation, 2015). To date, there have been many pilot newborn screening programs in sub-Saharan Africa, but only one country (Ghana) has established a national newborn screening and management program (Hsu et al, 2018; Kafando et al, 2009; McGann et al, 2013; Mutesa et al, 2016; Ohene-Frempong et al, 2008; Rahimy et al, 2009; Tshilolo et al, 2009).…”

“…A recent study conducted in Sierra Leone illuminates the experience of women caring for themselves and/or children with SCD in an urban and rural setting (Berghs, Dyson et al, 2020). The research team described a female culture characterized by a provision of care based on moral obligation and blame they are assigned because their children have SCD.…”

“…These findings suggest that female health-seeking behaviors may be influenced by stigma experienced in the community as well as by a woman’s ability to provide care to her children safely and effectively. Although this study (Berghs, Dyson et al, 2020) has contributed to the dearth of socio-cultural literature related to SCD in Sierra Leone, a broader view of SCD management in Sierra Leone including patient, family, and provider perspectives has not yet been described. Evidence resulting from such a broad study could provide a roadmap of available resources and current SCD-related knowledge, practices, and beliefs pertinent to the development of a culturally centered, sustainable, and comprehensive SCD program to increase awareness, health care capacity, and disease management (Anie et al, 2016; Dutta, 2008; Treadwell et al, 2015).…”