title: Understanding of genetic inheritance among Xhosa-speaking caretakers of children with hemophilia.
abstract: 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.
authors.affiliation: Department of Clinical and Laboratory Sciences, Division of Human Genetics, University of Cape Town, South Africa. gabriele.solomon@uct.ac.za
authors.forename: Gabriele
authors.initials: G
authors.lastname: Solomon
authors.forename: Jacquie
authors.initials: J
authors.lastname: Greenberg
authors.forename: Merle
authors.initials: M
authors.lastname: Futter
authors.forename: Lauraine
authors.initials: L
authors.lastname: Vivian
authors.forename: Claire
authors.initials: C
authors.lastname: Penn
mesh_terms: D000328:Adult; D000368:Aged; D017028:Caregivers; D002648:Child; D005260:Female; D006467:Hemophilia A / Q000235:genetics* / Q000451:nursing; D006801:Humans; D008297:Male; D008875:Middle Aged; D013019:South Africa