Department of Global Public Health and Primary Care, University of Bergen, Årstadveien 21, 5009, Bergen, Norway.
Department of Paediatrics and Child Health, School of Medicine, Makerere University, P. O. Box 7072, Kampala, Uganda.
Soc Sci Med. 2024 Aug;355:117119. doi: 10.1016/j.socscimed.2024.117119. Epub 2024 Jul 9.
Mothers are commonly blamed for the ill-health of their children, and this is well documented in research. However, few studies have considered gendered patterns of blame for hereditary conditions caused by mutations from both parents through dual, shared genetic inheritance. This paper explores the 'gendering' of blame in the context of an inherited blood disorder known as sickle cell disease. The findings are drawn from 18 focus group discussions with 117 caregivers of children with sickle cell disease in Malawi and Uganda. Although one mutation from each parent is required for the disease to develop, low awareness about their status as healthy carriers of a sickle cell trait complicated the caregivers' recognition and acceptance of their genetic link to the child's condition. This study demonstrates how fathers and other members of the paternal side of the child's family would deflect blame from their own lineage by directing sole 'genetic responsibility' for the child's disease towards mothers. We discuss the implications of gendered blame on household dynamics and healthcare-seeking for children with sickle cell disease in this setting.
母亲通常会因为孩子的健康问题而受到指责，这在研究中得到了充分的证明。然而，很少有研究考虑过由于父母双方的双重、共同遗传而导致的基因突变所引起的遗传性疾病的性别化指责模式。本文探讨了在一种名为镰状细胞病的遗传性血液疾病背景下的指责“性别化”现象。这些发现来自于在马拉维和乌干达对 117 名镰状细胞病患儿的 18 个焦点小组讨论中得出。尽管这种疾病的发展需要来自父母双方的一个突变，但由于对自己作为镰状细胞特征的健康携带者的意识较低，使得照顾者难以认识和接受他们与孩子病情之间的遗传联系。本研究表明，父亲和孩子家庭中父系的其他成员是如何通过将孩子疾病的“遗传责任”全部归咎于母亲，来避免将指责指向自己家族的。我们讨论了在这种情况下，性别化指责对家庭动态和镰状细胞病患儿寻求医疗保健的影响。
