Understanding of Genetic Inheritance among Xhosa-Speaking Caretakers of Children with Hemophilia
- 249 Downloads
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.
KeywordsGenetic 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.
- Buehrmann, M. V. (1984). Living in two worlds: communication between a white healer and her black counterparts. Cape Town: Human & Rousseau.Google Scholar
- Cassis, F. (2007). Psychosocial care for people with haemophilia. Treatment of Hemophilia 44.Google Scholar
- Featherstone, S. (2005). Postcolonial cultures. Edinburgh: Edinburgh UP.Google Scholar
- Herselman, S. (2007). ‘Health care through a cultural lens’: insights from medical anthropology. Current Opinion in Allergy and Clinical Immunology, 20(2), 62–75.Google Scholar
- Levin, M. E. (2005). The importance of language and culture in paediatric asthma care: communication problems between doctors and Xhosa speaking parents of children at a paediatric teaching hospital. Current Opinion in Allergy and Clinical Immunology, 18(1), 8–12.Google Scholar
- Levin, M. E. (2006b). Different use of medical terminology and culture-specific models of disease affecting communication between Xhosa-speaking patients and English-speaking doctors at a South African paediatric teaching hospital. South African Medical Journal, 96(10), 1080–1084.PubMedGoogle Scholar
- Mayatula, V., & Mavundla, T. (1997). A review on male circumcision procedures among South African Blacks. Curationis. Google Scholar
- Modell, B. (1997). Kinship and medical genetics: A clinician’s perspective. In A. Clarke & E. Parsons (Eds.), Culture, kinship and genes (pp. 27–39). London: Macmillan.Google Scholar
- National Haemophilia Foundation (USA). (2006). Types of bleeding disorders. Retrieved Feb, 2009, from http://www.hemophilia.org.
- Nattrass, N. (2006). Who consults sangomas in Khayelitsha? An exploratory quantitative analysis. Cape Town: CSSR Working Paper No. 151, Centre for Social Science Research University of Cape Town.Google Scholar
- Ndingaye, X. (2005). An evaluation of the effects of poverty in Khayelitsha: a case study of site C. (Master of Arts Thesis, University of Western Cape).Google Scholar
- Patton, M. (2002). Qualitative redearch & evaluation methods (3rd ed.). London: Sage.Google Scholar
- Penn, C. (2007). Factors affecting the success of mediated medical interviews in South Africa: review article. Current Opinion in Allergy and Clinical Immunology, 20(2), 66–72.Google Scholar
- Pretorius, E. (1999). Traditional healers. chapter 18. South African Health Review [Internet] [cited 2008 Feb] Available from: http://legacy.Hst.Org.za/sahr/99/chap18.Htm.
- Saohatse, M. C. (1998). Communication problems in multilingual speech communities. South African Journal of African Languages, 18, 111–117.Google Scholar
- Saohatse, M. C. (2000). Solving communication problems in medical institutions. South African Journal of African Languages, 20, 95–102.Google Scholar
- Sifunda, S., Reddy, P. S., Braithwaite, R. B., Stephens, T., Bhengu, S., Ruiter, R. A. C., & Van Den Borne, B. (2007). Social construction and cultural meanings of STI/HIV-related terminology among Nguni-speaking inmates and warders in four South African correctional facilities. Health Education Research, 22(6), 805–814.PubMedCrossRefGoogle Scholar
- Translation Working Group. (2009) Translation protocol for lay documents [Internet] [cited 2009 May] Available from: http://www.eurolight-online.eu/assets/89/589EA978-AAC7-A35A-D1B529E14B7A4A00_document/translation_protocol_for_questionnaire.pdf.
- Wessells, M., & Monteiro, C. (2004). Healing the wounds following protracted conflict in Angola: A community-based approach to assisting war-affected children. In U. P. Gielen, J. M. Fish, & J. G. Draguns (Eds.), Handbook of culture, therapy, and healing. Mahwah, NJ: Lawrence Erlbaum.Google Scholar
- Zulfikar, B., Karaman, M.I., & Ovali, F. (2003). Circumcision in hemophilia. An overview. Treatment of Hemophilia. Google Scholar