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“Whatever is bad goes back to the woman”: The gendered blame game of sickle cell disease in Malawi and Uganda

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  • Svege, Sarah
  • Rujumba, Joseph
  • Robberstad, Bjarne
  • Lange, Siri

Abstract

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.

Suggested Citation

  • Svege, Sarah & Rujumba, Joseph & Robberstad, Bjarne & Lange, Siri, 2024. "“Whatever is bad goes back to the woman”: The gendered blame game of sickle cell disease in Malawi and Uganda," Social Science & Medicine, Elsevier, vol. 355(C).
    • Handle: RePEc:eee:socmed:v:355:y:2024:i:c:s0277953624005720
    DOI: 10.1016/j.socscimed.2024.117119
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    References listed on IDEAS

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    1. Horstman, Klasien & Finkler, Kaja, 2011. "Genetics, health care, family and kinship in a global perspective: Situated processes of co-construction," Social Science & Medicine, Elsevier, vol. 72(11), pages 1739-1742, June.
    2. Dimond, Rebecca & Doheny, Shane & Ballard, Lisa & Clarke, Angus, 2022. "Genetic testing and family entanglements," Social Science & Medicine, Elsevier, vol. 298(C).
    3. Arribas-Ayllon, Michael & Sarangi, Srikant & Clarke, Angus, 2008. "Managing self-responsibility through other-oriented blame: Family accounts of genetic testing," Social Science & Medicine, Elsevier, vol. 66(7), pages 1521-1532, April.
    4. Marsh, Vicki & Kombe, Francis & Fitzpatrick, Ray & Molyneux, Sassy & Parker, Michael, 2013. "Managing misaligned paternity findings in research including sickle cell disease screening in Kenya: ‘Consulting communities’ to inform policy," Social Science & Medicine, Elsevier, vol. 96(C), pages 192-199.
    5. Dimond, Rebecca & Bartlett, Andrew & Lewis, Jamie, 2015. "What binds biosociality? The collective effervescence of the parent-led conference," Social Science & Medicine, Elsevier, vol. 126(C), pages 1-8.
    6. Tolhurst, Rachel & Amekudzi, Yaa Peprah & Nyonator, Frank K. & Bertel Squire, S. & Theobald, Sally, 2008. ""He will ask why the child gets sick so often": The gendered dynamics of intra-household bargaining over healthcare for children with fever in the Volta Region of Ghana," Social Science & Medicine, Elsevier, vol. 66(5), pages 1106-1117, March.
    7. Weiner, Kate, 2011. "Exploring genetic responsibility for the self, family and kin in the case of hereditary raised cholesterol," Social Science & Medicine, Elsevier, vol. 72(11), pages 1760-1767, June.
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