'All her children are born that way': Gendered experiences of stigma in families affected by sickle cell disorder in rural Kenya

Ethnicity and Health

Volumn 16, Issue 4-5, 2011, Pages 343-359

  Marsh, Vicki M ^a,b,c   Kamuya, Dorcas M ^a   Molyneux, Sassy S ^a,b,c  

^a KEMRI WELLCOME TRUST RESEARCH PROGRAMME   (Kenya)

^b UNIVERSITY OF OXFORD   (United Kingdom)

^c UNIVERSITY OF OXFORD   (United Kingdom)

Author keywords

Africa; gender; health policy; sickle cell disorder; stigmatisation

Indexed keywords

BLOOD SYSTEM DISORDER; CHILD HEALTH; CYTOLOGY; DATA INTERPRETATION; DISEASE CONTROL; DISEASE SEVERITY; EDUCATION; GENDER DISPARITY; HEALTH POLICY; MATERNAL EFFECT; MEDICINE; PATERNITY; RELIGION; RESEARCH PROGRAM; RISK FACTOR; RURAL POPULATION; SOCIAL STATUS; SOCIOECONOMIC SURVEY; WOMENS HEALTH; WOMENS STATUS;

ADULT; AGED; ARTICLE; CULTURAL ANTHROPOLOGY; DISPLACEMENT BEHAVIOR; ETHNOLOGY; FAMILY RELATION; FATHER; FEMALE; HEALTH CARE POLICY; HUMAN; INTERVIEW; KENYA; MALE; MIDDLE AGED; MOTHER; PERSONNEL; PSYCHOLOGICAL ASPECT; RURAL POPULATION; SEX DIFFERENCE; SICKLE CELL ANEMIA; SOCIAL STIGMA;

ADULT; AGED; ANEMIA, SICKLE CELL; CULTURE; FAMILY RELATIONS; FATHERS; FEMALE; HEALTH POLICY; HUMANS; INTERVIEWS AS TOPIC; KENYA; MALE; MIDDLE AGED; MOTHERS; RESEARCH PERSONNEL; RURAL POPULATION; SCAPEGOATING; SEX FACTORS; SOCIAL STIGMA; YOUNG ADULT;

KENYA;

EID: 79961152774     PISSN: 13557858     EISSN: 14653419     Source Type: Journal    
DOI: 10.1080/13557858.2010.541903     Document Type: Article

References (46)

1. Adeodu, O.O., Alimi, T., and Adekile, A.D., 2000. A comparative study of perception of sickle cell anaemia by married Nigerian rural and urban women. West African Journal of Medicine, 19, 1-5.
2. Akenzua, G., 1990. Screening for psychosocial dysfunction in children with sickle cell anaemia. Nigerian Journal of Paediatrics, 17, 15-21.
3. Akinyanju, O.O. and Anionwu, E.N., 1989. Training of counsellors on sickle-cell disorders in Africa. Lancet, 1, 653-654. (Pubitemid 19078794)
4. Allotey, P. and Reidpath, D., 2001. Establishing the causes of childhood mortality in Ghana: The 'spirit child'. Social Science & Medicine, 52, 1007-1012. (Pubitemid 32065782)
5. Assimadi, J., Gbadoe, A., and Nyadamu, M., 2000. The effects of sickle cell disease on families in Togo. Archives of Pediatrics, 7, 615-620. (Pubitemid 30415096)
6. Atkin, K., Ahmad, W.I., and Anionwu, E.N., 1998. Screening and counselling for sickle cell disorders and thalassaemia: The experience of parents and health professionals. Social Science & Medicine, 47, 1639-1651. (Pubitemid 28545389)
7. Bamisaiye, A., Bakare, C.G., and Olatawura, M.O., 1974. Some social-psychologic dimensions of sickle cell anemia among Nigerians. Clinical Pediatrics (Phila), 13, 56-59.
8. Borry, P., Nys, H., and Dierick, K., 2007. Carrier testing in minors: Conflicting views. Nature Reviews, Genetics, 8, 828. (Pubitemid 47609094)
9. Brantley, C., 1979. An historical perspective of the Giriama and Witchcraft control. Journal of the International African Institute, 49, 112-133.
10. Castro, A. and Farmer, P., 2005. Understanding and addressing AIDS-related stigma: From anthropological theory to clinical practice in Haiti. American Journal of Public Health, 95, 53-59. (Pubitemid 40075882)
11. Collins, F.S., 1999. Shattuck lecture-medical and societal consequences of the Human Genome Project. New England Journal of Medicine, 341, 28-37. (Pubitemid 29293718)
12. Cowgill, K.D., et al., 2006. Effectiveness of haemophilus influenzae type B Conjugate vaccine introduction into routine childhood immunization in Kenya. JAMA, 296, 671-678. (Pubitemid 44200638)
13. Duster, T., 2003. Backdoor to Eugenics. New York: Routledge.
14. Featherstone, K., et al., 2006. Mutual surveillance. Risky relations. Oxford: Berg.
15. Fullwiley, D., 2006. Biosocial suffering: Order and illness in urban West Africa. BioSocieties, 1, 421-438.
16. Goffman, E., 1963. Stigma and social identity. Stigma: Notes on the management of a spoiled identity. New Jersey: Penguin Books.
17. Hoedemaekers, R., et al., 2006. The complexities of ethical evaluation of genomics research. HEC Forum, 18, 18-36.
18. Makani, J., Williams, T.N., and Marsh, K., 2007. Sickle cell disease in Africa: Burden and research priorities. Annals of Tropical Medicine and Parasitology, 101, 3-14. (Pubitemid 47488079)
19. Markel, H., 1992. The stigma of disease: Implications of genetic screening. American Journal of Medicine, 93, 209-215.
20. Miller, F.A., 2009. The complex promise of newborn screening. Indian Journal of Medical Ethics, 6, 142-148.
21. Molyneux, C.S., et al., 2002. Intra-household relations and treatment decision-making for childhood illness: A Kenyan case study. Journal of Biosocial Science, 34, 109-131. (Pubitemid 34083954)
22. Molyneux, C.S., et al., 2005. 'Even if they ask you to stand by a tree all day, you will have to do it (laughter)...!': Community voices on the notion and practice of informed consent for biomedical research in developing countries. Social Science & Medicine, 61, 443-454. (Pubitemid 40703936)
23. National Council on Bioethics (NCOB), 2006. Genetic screening: A supplement to the 1993 report by the Nuffield Council on Bioethics. Cardiff: Clyvedon Press Ltd.
24. Naveed, M., et al., 1992. Sociocultural problems in genetic counselling. British Medical Journal, 29, 140.
25. Nzewi, E., 2001. Malevolent ogbanje: Recurrent reincarnation or sickle cell disease? Social Science & Medicine, 52, 1403-1416. (Pubitemid 32177781)
26. Ohaeri, J. and Shokunbi, W., 2002. Psychosocial burden of sickle cell disease on caregivers in a Nigerian setting. Journal of National Medical Association, 94, 1058-1070.
27. Ohaeri, J.U. and Shokunbi,W.A., 2001. Attitudes and beliefs of relatives of patients with sickle cell disease. East African Medical Journal, 78, 174-179. (Pubitemid 33395014)
28. Ohaeri, J.U., et al., 1995. The psychosocial problems of sickle cell disease sufferers and their methods of coping. Social Science & Medicine, 40, 955-960.
29. Parker, M., et al., 2009. Ethical data release in genome-wide association studies in developing countries. PLoS Medicine, 6, e1000143.
30. Parker, R. and Aggleton, P., 2003. HIV and AIDS-related stigma and discrimination: A conceptual framework and implications for action. Social Science & Medicine, 57, 13-24. (Pubitemid 36566516)
31. Parkin, D., 1991a. Alternative selves: Invasions and cures. In: Sacred void: Spatial images of work and ritual among the Giriama of Kenya. Cambridge: Cambridge University Press, 160-191.
32. Parkin, D., 1991b. From west to east: The works of marriage. In: Sacred void: Spatial images of work and ritual among the Giriama of Kenya. Cambridge: Cambridge University Press, 84-103.
33. Phoenix, D.D., et al., 1995. Sickle cell screening policies as portent: How will the human genome project affect public sector genetic services? Journal of the National Medical Association, 87, 807-812.
34. Rapp, R., 1988. Chromosomes and communication: The discourse of genetic counseling. Medical Anthropology Quarterly, 2, 143-157.
35. Richards, M.P.M., 1993. The new genetics: Some issues for social scientists. Sociology of Health and Illness, 15, 567. (Pubitemid 24768321)
36. Sharma, A., Phadke, S., and Agarwal, S., 1994. Sociocultural and ethical dilemmas of genetic counseling: A suggested working approach. Journal of Genetic Counseling, 3, 81-83.
37. Shaw, A., 2006. The contingency of the 'Genetic Link' in constructions of kinship and inheritance-an anthropological perspective. In: J. Spencer and A. Du Bois-Pedain, eds. Freedom and responsibility in reproductive choice. Cambridge: Hart Publishing, 73-90.
38. Tekola, F., et al., 2009. Impact of social stigma on the process of obtaining informed consent for genetic research on podoconiosis: A qualitative study. BMC Medical Ethics, 10, 13.
39. UNAIDS, 2000. Review of relevant literature. In: UNAIDS, ed. HIV and AIDS related stigmatization, discrimination and denial: Forms, contexts and determinants. Researchs studies from Uganda and India. Geneva: UNAIDS, 9-16.
40. UNAIDS, 2005. Understanding stigma and discrimination: Forms and contexts. In: P. Aggleton, K. Wood, A. Malcolm, and R. Parker, eds. HIV related stigma, discrimination and human rights violations: Case studies of successful programmes. Geneva: UNAIDS, 7-10.
41. Wang, V. and Marsh, F.H., 1992. Ethical principles and cultural integrity in health care delivery: Asian ethnocultural perspectives in genetic services. Journal of Genetic Counseling, 1, 81-92.
42. Weatherall, D.J., 2003. Genomics and global health: Time for a reappraisal. Science, 302, 597-599. (Pubitemid 37310905)
43. Weatherall, D.J. and Clegg, J.B., 2001. Inherited haemoglobin disorders: An increasing global health problem. Bulletin of the World Health Organization, 79, 704-712. (Pubitemid 32776838)
44. WHO, 2002. Genomics and world health: report of the advisory committee on heath research. Geneva: World Health Organization.
45. WHO, 2006. Medical genetic services in developing countries: The ethical, legal and social implications of genetic testing and screening. Geneva: World Health Organization.
46. Williams, T.N., et al., 2005. Sickle cell trait and the risk of Plasmodium falciparum malaria and other childhood diseases. The Journal of Infectious Diseases, 192, 178-186. (Pubitemid 40863872)