Leicester School of Allied Health Sciences, De Montfort University, Leicester, UK.
Sierra Leone Sickle Cell Disease Society, Freetown, Sierra Leone.
Cult Health Sex. 2023 May;25(5):633-647. doi: 10.1080/13691058.2022.2083239. Epub 2022 Jun 9.
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.
在塞拉利昂，母亲的角色正逐渐转变为镰状细胞疾病女性的一种道德职业。本研究于 2018 年开展，为一项定性参与式研究，共对 36 名女性照顾者和镰状细胞疾病女性进行了半结构化访谈。母亲们认为，疾病的医学模式加上护理实践是对“被破坏的身份”观念进行道德管理的手段，可以重新思考病态、残疾和潜在严重疾病的生活结果。母亲们鼓励自己患镰状细胞病的孩子接受教育，以此作为获得正式就业和职业的途径，这些职业不会对他们的身体造成负担，并确保生育时机。教育和就业是有时间限制的，以确保有足够的时间发展照顾关系并安全生育。理解和鼓励将母亲的角色发展为一种道德职业，包括身体上高度警惕的护理实践，对母亲的自我认同很有价值，使她们能够为自己和孩子看到未来。
