Understanding of Genetic Inheritance among Xhosa-Speaking Caretakers of Children with Hemophilia

Department of Clinical and Laboratory Sciences, Division of Human Genetics, University of Cape Town, South Africa.
Journal of Genetic Counseling (Impact Factor: 2.24). 03/2012; 21(5):726-40. DOI: 10.1007/s10897-012-9495-9
Source: PubMed


Hemophilia A and B are X-linked recessive inherited bleeding disorders that have a profound impact on the family of affected individuals. Education is vital to enable women to appreciate the implications of being a carrier and the implications for a prospective child. Prior research has shown that cultural, socio-economic and linguistic issues in South Africa are major barriers to communication for first-language Xhosa-speakers. This exploratory study aimed to investigate the basic knowledge of genetic inheritance among this cultural group in order to promote culturally-sensitive, effective genetic counseling. Ten in-depth interviews were conducted with Xhosa-speaking mothers or caregivers of boys with hemophilia. Results suggest that the participants had a very limited understanding of the clinical management, genetic consequences and cause of hemophilia. While treatment and care by health care service providers was fully accepted, several participants believed that traditional methods would provide them with more satisfactory explanations. These findings suggest that there is a critical need for socio-culturally tailored, language-specific education for families with hemophilia.

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    • "Like in namamana, the admixture of each of the parent's blood in the offspring gives rise to a trait. Similarly in other cultures, the Xhosa speakers in South Africa, inheritance was understood as the passing down of traits possessed by either the father or mother (Solomon et al. 2012). There is a notion that the presence of physical resemblance in the offspring can be attributed to stronger genes. "
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