Journal of Genetic Counseling

, Volume 19, Issue 1, pp 9–21 | Cite as

Grandmothers as Gems of Genetic Wisdom: Exploring South African Traditional Beliefs About the Causes of Childhood Genetic Disorders

  • Claire Penn
  • Jennifer Watermeyer
  • Carol MacDonald
  • Colleen Moabelo
Original Research

Abstract

With its diverse cultural and linguistic profile, South Africa provides a unique context to explore contextual influences on the process of genetic counseling. Prior research suggests intergenerational differences regarding models of causation which influence treatment-seeking paths. This pilot study therefore aimed to explore South African traditional beliefs regarding common childhood genetic disorders. Three focus groups were conducted with fifteen grandmothers from different cultural backgrounds in an urban community. Questions pertained to the role of the grandmother, traditional beliefs regarding causes of genetic disorders, explanations of heredity, and prevention and management of genetic disorders. Results indicate a variety of cultural explanations for causes of childhood genetic disorders. These causes can be classified into categories related to lifestyle, behavior, social issues, culture, religion, genetic, and familial causes. Prevention and treatment issues are also highlighted. These findings have implications for genetic counseling practice, which needs to include a greater focus on cultural issues.

Keywords

Genetic counseling Traditional beliefs Models of causation Culture South Africa Grandmother Qualitative research Focus groups 

References

  1. Andersson, N., & Marks, S. (1989). The state, class and the allocation of health resources in Southern Africa. Social Science & Medicine, 28, 515–530.CrossRefGoogle Scholar
  2. Aronson, J. (1994). A pragmatic view of thematic analysis. The Qualitative Report, 2, 1–4.Google Scholar
  3. Arribas-Ayllon, M., Sarangi, S., & Clarke, A. (2008). Managing self-responsibility through other-oriented blame: family accounts of genetic testing. Social Science & Medicine, 66, 1521–1532.CrossRefGoogle Scholar
  4. Barratt, J., & Penn, C. (2009). Listening to the voices of disability: Experiences of caring for children with cerebral palsy in a rural South African setting. In M. MacLachlan & L. Swartz (Eds.), Disability and International Development: Towards Inclusive Global Health (pp. 191–212). New York: Springer.Google Scholar
  5. Beeson, D. (1997). Nuance, complexity and context: qualitative methods in genetic counseling research. Journal of Genetic Counseling, 6(1), 21–43.CrossRefPubMedGoogle Scholar
  6. Behforouz, H., Farmer, P., & Mukherjee, J. (2004). From directly observed therapy to accompagnateurs: enhancing AIDS treatment outcomes in Haiti and in Boston. Clinical Infectious Diseases, 38, S429–S436.CrossRefPubMedGoogle Scholar
  7. Bock, J., & Johnson, S. E. (2008). Grandmothers’ productivity and the HIV/AIDS pandemic in sub-Saharan Africa. Journal of Cross-Cultural Gerontology, 23(2), 131–145.CrossRefPubMedGoogle Scholar
  8. Cancian, F., & Oliker, J. (1998). Caring and gender. Walnut Creek: Alla Mira.Google Scholar
  9. Clarke, A., & Parsons, E. (1997). Culture, kinship and genes. Basingstoke: Macmillan.Google Scholar
  10. Clarke, A., Parsons, E., & Williams, A. (1996). Outcomes and process in genetic counseling. Clinical Genetics, 50, 462–469.PubMedCrossRefGoogle Scholar
  11. Dysart-Gale, D. (2007). Clinicians and medical interpreters: negotiating culturally appropriate care for patients with limited English ability. Family and Community Health, 30, 237–246.PubMedGoogle Scholar
  12. Edwards, J., Greenberg, J., & Sahhar, M. (2008). Global awakening in genetic counseling. Nature Proceedings. Retrieved June 1, 2009 from the World Wide Web: http://precedings.nature.com/documents/1574/version/1.
  13. Forrest, K., Simpson, S., Wilson, B., van Teijlingen, E., McKee, L., Haites, N., et al. (2003). To tell or not to tell: barriers and facilitators in family communication about genetic risk. Clinical Genetics, 64, 317–326.CrossRefPubMedGoogle Scholar
  14. Grbich, C. (1999). Qualitative research in health: An introduction. London: Sage.Google Scholar
  15. Haram, L. (1991). Tswana medicine in interaction with biomedicine. Social Science & Medicine, 33, 167–175.CrossRefGoogle Scholar
  16. Herselman, S. (2007). ‘Health care through a cultural lens’: insights from medical anthropology. Current Allergy & Clinical Immunology, 20, 62–65.Google Scholar
  17. Hong, E., Zeeb, H., & Repacholi, M. (2006). Albinism in Africa as a public health issue. BMC Public Health, 6, 212–219.CrossRefPubMedGoogle Scholar
  18. Ingstad, B. (1990). The cultural construction of AIDS and its consequences for prevention in Botswana. Medical Anthropology Quarterly, 4(1), 28–40.CrossRefGoogle Scholar
  19. Ingstad, B., Bruun, F., & Tlou, S. (1997). AIDS and the elderly Tswana: the concept of pollution and consequences for AIDS prevention. Journal of Cross-Cultural Gerontology, 12, 357–372.CrossRefPubMedGoogle Scholar
  20. Jewkes, R., Abrahams, N., & Mvo, Z. (1998). Study of health care seeking practices of pregnant women in Cape Town. Report four: Summary of findings, conclusions and policy action. Tygerberg: Medical Research Council.Google Scholar
  21. Jezewski, M., & Sotnik, P. (2001). Culture brokering: Providing culturally competent rehabilitation services to foreign-born persons. New York: Center for International Rehabilitation Research Information and Exchange.Google Scholar
  22. Kale, R. (1995). South Africa’s health: traditional healers in South Africa: a parallel health care system. British Medical Journal, 310, 1182–1185.PubMedGoogle Scholar
  23. Kasanga, L., & Lwanga-Lumu, J. (2007). Cross-cultural linguistic realization of politeness: a study of apologies in English and Setswana. Journal of Politeness Research, 3, 65–92.Google Scholar
  24. Kaufert, J., & Koolage, W. (1984). Role conflict among ‘culture brokers’: the experience of native Canadian medical interpreters. Social Science & Medicine, 18, 283–286.CrossRefGoogle Scholar
  25. King, S. V. (2008). Introduction to the journal of cross-cultural gerontology, special issue on aging and social change in Africa. Journal of Cross-Cultural Gerontology, 23(2), 107–110.CrossRefPubMedGoogle Scholar
  26. Kromberg, J. G. R., Castle, D., Zwane, E. M., & Jenkins, T. (1989). Albinism and skin cancer in southern Africa. Clinical Genetics, 36(1), 43–52.PubMedGoogle Scholar
  27. Krueger, R., & Casey, M. (2000). Focus groups: A practical guide for applied research (3rd ed.). Thousand Oaks: Sage.Google Scholar
  28. Kuper, H. (1963). The Swazi: A South African Kingdom. New York: Holt, Rinehart and Winston.Google Scholar
  29. Labun, E. (1999). Shared brokering: the development of a nurse/interpreter partnership. Journal of Immigrant Health, 1, 215–222.CrossRefPubMedGoogle Scholar
  30. Levin, M. (2006). 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, 1080–1083.PubMedGoogle Scholar
  31. Liddell, C., Barrett, L., & Bydawell, M. (2006). Indigenous beliefs and attitudes to aids precautions in a rural South African community: an empirical study. Annals of Behavioral Medicine, 32(3), 218–225.CrossRefPubMedGoogle Scholar
  32. London, L. (2000). Alcohol consumption amongst South African farm workers: a challenge for post-apartheid health sector transformation. Drug and Alcohol Dependence, 59, 199–206.CrossRefPubMedGoogle Scholar
  33. Marwick, B. (1966). The Swazi: An ethnographic account of the natives of the Swaziland protectorate. London: Frank Cass & Co.Google Scholar
  34. Mathole, T., Lindmark, G., Majoko, F., & Ahlberg, B. (2004). A qualitative study of women’s perspectives of antenatal care in a rural area of Zimbabwe. Midwifery, 20, 122–132.CrossRefPubMedGoogle Scholar
  35. May, P., Brooke, L., Gossage, J., Croxford, J., Adnams, C., Jones, K., et al. (2000). Epidemiology of fetal alcohol syndrome in a South African community in the Western Cape Province. American Journal of Public Health, 90, 1905–1912.CrossRefPubMedGoogle Scholar
  36. Meiser, B., Irle, J., Lobb, E., & Barlow-Stewart, K. (2008). Assessment of the content and process of genetic counseling: a critical review of empirical studies. Journal of Genetic Counseling, 17, 434–451.CrossRefPubMedGoogle Scholar
  37. Mesaki, S. (2008). Albinism: Rejection, stigmatisation and poverty. Retrieved March 20, 2009 from the World Wide Web: http://ip-216-69-164-44.ip.secureserver.net/ipp/observer/2008/04/20/112771.html.
  38. Meyer, C., & Moagi, S. (2000). Determining priority needs of mothers with disabled children in Winterveldt. South African Journal of Occupational Therapy, 30(2), 7–11.Google Scholar
  39. 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
  40. Morris-Rosendahl, D. (2009). Molecular genetic analysis of patients with malformations of cortical development. Paper presented at 13th South African Society for Human Genetics Congress, Stellenbosch, 5–8 April 2009.Google Scholar
  41. Ogunmefun, C., & Schatz, E. (2006). Caregiver’s sacrifices: the opportunity costs of adult morbidity and mortality on female pensioners in rural South Africa. IBS Population Program Working Paper POP2006-11, PAC2006-02. Retrieved April 21, 2009 from the World Wide Web: http://www.colorado.edu/ibs/pubs/pac/pac2006-0002.pdf.
  42. Petersen, A. (2006). The best experts: the narratives of those who have a genetic condition. Social Science & Medicine, 63, 32–42.CrossRefGoogle Scholar
  43. Phillips, G. (2007). Healing, cultural safety and the criminal justice system. Paper presented at the 3rd National Indigenous Justice CEO Forum, Brisbane, 21 November 2007.Google Scholar
  44. Pilnick, A., & Dingwall, R. (2001). Research directions in genetic counseling: a review of the literature. Patient Education and Counseling, 44, 95–105.CrossRefPubMedGoogle Scholar
  45. Port, R., Arnold, J., Kerr, D., Gravish, N., & Winship, I. (2008). Cultural enhancement of a clinical service to meet the needs of indigenous people; genetic service development in response to issues for New Zealand Maori. Clinical Genetics, 73(2), 132–138.CrossRefPubMedGoogle Scholar
  46. Rapp, R. (1988). Chromosomes and communication: the discourse of genetic counseling. Medical Anthropology Quarterly, 2(2), 143–157.CrossRefGoogle Scholar
  47. Solomon, G., Penn, C., Greenberg, J., & Vivian, L. (2008). Basic understanding of genetics amongst amaXhosa caregivers of haemophilia patients, medical support staff and traditional healers. Poster presented at 6th International Communication, Medicine and Ethics (COMET) Conference, Cape Town, 2–4 July 2008.Google Scholar
  48. Urban, M. (2009). Prenatal screening for Down syndrome in the Peninsula maternity and neonatal service: Past, present and future. Paper presented at the 13th South African Society for Human Genetics Conference, Stellenbosch, 5–8 April 2009.Google Scholar
  49. van Dyk, A. (2001a). Traditional African beliefs and customs: implications for AIDS education and prevention in Africa. South African Journal of Psychology, 31, 60–66.Google Scholar
  50. van Dyk, A. (2001b). “Why me and not my neighbour?” HIV/AIDS care and counseling in a traditional African context. Curationis, 24, 4–11.PubMedGoogle Scholar
  51. Ware, N., Idoko, J., Kaaya, S., Biraro, I., Wyatt, M., Agbaji, O., et al. (2009). Explaining adherence success in sub-Saharan Africa: an ethnographic study. PLoS Medicine, 6, 39–47.CrossRefGoogle Scholar
  52. Weil, J. (2001). Multicultural education and genetic counseling. Clinical Genetics, 59, 143–149.CrossRefPubMedGoogle Scholar
  53. Wessels, T., & Penn, C. (2008). “Do you know why the doctor sent you?”—Characteristics of the genetic counseling process in a multicultural antenatal context in Johannesburg South Africa. Poster presented at the European Human Genetics Society Conference, Barcelona, May 31–June 3 2008.Google Scholar
  54. World Health Organization. (2008). Task shifting: rational redistribution of tasks among health workforce teams: global recommendations and guidelines. Retrieved April 21, 2009 from the World Wide Web: http://www.who.int/healthsystems/TTR-TaskShifting.pdf.

Copyright information

© National Society of Genetic Counselors, Inc. 2009

Authors and Affiliations

  • Claire Penn
    • 1
  • Jennifer Watermeyer
    • 1
  • Carol MacDonald
    • 1
  • Colleen Moabelo
    • 1
  1. 1.School of Human and Community DevelopmentUniversity of the WItwatersrandJohannesburgSouth Africa

Personalised recommendations