Investing in Midwives Programme, International Confederation of Midwives, 85 Freetown Avenue, La Bawaleshie, East Legon, P.M.B. L19, Accra, Ghana.
Ethn Health. 2011 Aug-Oct;16(4-5):465-81. doi: 10.1080/13557858.2010.531249.
To describe the lay meanings of sickle cell disease (SCD) in the Ashanti region of Ghana.
Depth interviews with 31 fathers of people with SCD; a focus group with health professionals associated with the newborn sickle cell screening programme, and a focus group with mothers of children with SCD.
Whilst there are discourses that associate sickle cell with early or recurrent death, with supernatural undermining of family well-being, and with economic challenges in purchasing medical care, other discourses that value children and other family practices that resist stigma are also in evidence.
Lay perspectives on SCD are constructed in the contexts of enduring culture (the high value placed on children); changing culture (medicine and research as available alternative discourses to supernatural ones); altered material circumstances (newborn screening producing cohorts of children with SCD); changing political situations (insurance-based treatment); enhanced family resources (the experience of a cohort of young people with SCD). Above all the praxis of successfully caring for a child with SCD, and the political experience of sharing that praxis, stands in opposition to discourses of death and helps parents resist stigma and despair.
描述加纳阿散蒂地区镰状细胞病（SCD）的通俗意义。
对 31 名 SCD 患者的父亲进行深度访谈；与新生儿镰状细胞筛查计划相关的卫生专业人员进行焦点小组讨论，以及与 SCD 患儿的母亲进行焦点小组讨论。
虽然存在将镰状细胞与早逝或反复死亡、超自然破坏家庭福祉以及购买医疗保健方面的经济挑战联系起来的论述，但也存在重视儿童和其他家庭实践以抵制污名化的论述。
对 SCD 的通俗观点是在持久文化（对儿童的高度重视）；变化的文化（医学和研究作为超自然话语的替代话语）；改变物质环境（新生儿筛查产生了一批患有 SCD 的儿童）；变化的政治局势（基于保险的治疗）；增强家庭资源（一群患有 SCD 的年轻人的经历）。最重要的是，成功照顾患有 SCD 的儿童的实践以及分享这种实践的政治经验，与死亡的论述相悖，帮助父母抵制污名化和绝望。
