Journal of Genetic Counseling

, Volume 21, Issue 5, pp 726–740 | Cite as

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

  • Gabriele Solomon
  • Jacquie Greenberg
  • Merle Futter
  • Lauraine Vivian
  • Claire Penn
Original Research


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.


Genetic inheritance Cultural differences Culturally-sensitive Genetic counseling South Africa Xhosa-speakers Hemophilia 



We are grateful to the interviewer, Ncumisa Zitho, for her positive and personable attitude during the interview process and her enthusiasm in helping us understand amaXhosa culture, Anne Cruickshank (Hemophilia Nursing Sister) for facilitating participation in the Khaya Rock HF support group and participating families for their willingness to share their personal information. This research was supported by a grant from the Medical Research Council and from the South African Netherlands Research program on Alternatives in Development.


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Copyright information

© National Society of Genetic Counselors, Inc. 2012

Authors and Affiliations

  • Gabriele Solomon
    • 1
    • 4
  • Jacquie Greenberg
    • 1
  • Merle Futter
    • 1
  • Lauraine Vivian
    • 2
  • Claire Penn
    • 3
  1. 1.Department of Clinical and Laboratory Sciences, Division of Human GeneticsUniversity of Cape TownCape TownSouth Africa
  2. 2.Primary Health Care Directorate, Faculty of Health SciencesUniversity of Cape TownCape TownSouth Africa
  3. 3.Health Communication ProjectUniversity of the WitwatersrandJohannesburgSouth Africa
  4. 4.Department of Clinical and Laboratory Sciences, Faculty of Health SciencesUniversity of Cape TownCape TownSouth Africa

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