Abstract
Background
Over the past three decades, a range of international stakeholders have highlighted the possibility that genomic research may impact stigma associated with psychiatric disorders. Limited research has been conducted in Africa to investigate this relation.
Method
In the present study, using focus group discussions, we explored the relation between genetic attribution and stigma among 36 Xhosa people with schizophrenia. We addressed three main questions: (1) What causal beliefs do Xhosa people with schizophrenia use to explain their illness and to what extent do genetic explanations play a role in these beliefs? (2) What are the internalised stigma experiences of Xhosa people with schizophrenia? (3) How do genetic explanations relate to stigma experiences, if at all?
Results
Most participants were able to define genetics and some linked genetics to disease causation. Despite adequate knowledge of genetics and an emphasis on genetic explanations of schizophrenia in the study, most participants held a multitude of causal explanations including: psychosocial, environmental, and cultural. Moreover, participants rarely mentioned disease cause when describing their stigma experiences.
Discussion
For this population group, there was no straight-forward relation between a genetic attribution and stigma. Therefore, we did not find evidence that genetic attribution may significantly increase stigma. Although North American and European literature provides conflicting evidence regarding this relation, there is increased consensus that biomedical explanations for psychiatric disorders may reduce blame. This study found evidence supporting that consensus. This study provides an empirical foundation to inform ongoing work on the psychosocial implications of psychiatric genomics research in non-Western contexts.
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References
Angermeyer MC, Holzinger A, Carta MG, Schomerus G (2011) Biogenetic explanations and public acceptance of mental illness: systematic review of population studies. Br J Psychiatry 199(5):367–372. https://doi.org/10.1192/bjp.bp.110.085563
Mehta S, Farina A (1997) Is being “sick” really better? Effect of the disease view of mental disorder on stigma. J Soc Clin Psychol 16(4):405–419
Phelan JC (2005) Geneticization of deviant behavior and consequences for stigma: the case of mental illness. J Health Soc Behav 46(4):307–322. https://doi.org/10.1177/002214650504600401
Phelan JC, Cruz-Rojas R, Reiff M (2002) Genes and stigma: the connection between perceived genetic etiology and attitudes and beliefs about mental illness. Psychiatr Rehab Skills 6(2):159–185
Kong C, Dunn M, Parker M (2017) Psychiatric genomics and mental health treatment: setting the ethical agenda. Am J Bioeth 17(4):3–12. https://doi.org/10.1080/15265161.2017.1284915
Savulescu J, Kerin J (1999) The "geneticisation" of disease stigma. Lancet 354:16. https://doi.org/10.1016/s0140-6736(99)90359-8
Duster T (2003) Backdoor to eugenics. Routledge, New York
Sartorius N (1997) Fighting schizophrenia and its stigma: a new World Psychiatric Association educational programme. Br J Psychiatry 170(4):297–297
Appelbaum PS (2017) Who's Afraid of Psychiatric Genomics? Am J Bioeth 17(4):15–17. https://doi.org/10.1080/15265161.2017.1284937
Pescosolido BA, Martin JK, Long JS, Medina TR, Phelan JC, Link BG (2010) “A disease like any other”? A decade of change in public reactions to schizophrenia, depression, and alcohol dependence. Am J Psychiatry 167(11):1321–1330
Lebowitz MS, Appelbaum PS (2019) Biomedical explanations of psychopathology and their implications for attitudes and beliefs about mental disorders. Annu Rev of Clin Psychol 15(15):555–577. https://doi.org/10.1146/annurev-clinpsy-050718-095416
Breheny M (2007) Genetic attribution for schizophrenia, depression, and skin cancer: impact on social distance. NZ J Psychol 36(3):154–160
Angermeyer MC, Matschinger H (2004) The stereotype of schizophrenia and its impact on discrimination against people with schizophrenia: results from a representative survey in Germany. Schizophr Bull 30(4):1049–1061. https://doi.org/10.1093/oxfordjournals.schbul.a007120
Bennett L, Thirlaway K, Murray AJ (2008) The stigmatising implications of presenting schizophrenia as a genetic disease. J Gen Couns 17(6):550–559
de Vries J, Bull SJ, Doumbo O, Ibrahim M, Mercereau-Puijalon O, Kwiatkowski D, Parker M (2011) Ethical issues in human genomics research in developing countries. BMC Med Ethics 12(1):5. https://doi.org/10.1186/1472-6939-12-5
de Vries J, Jallow M, Williams TN, Kwiatkowski D, Parker M, Fitzpatrick R (2012) Investigating the potential for ethnic group harm in collaborative genomics research in Africa: is ethnic stigmatisation likely? Soc Sci Med 75(8):1400–1407
Faure MC, Matshabane OP, Marshall P, Appelbaum PS, Stein DJ, Engel ME, de Vries J (2019) Does genetics matter for disease-related stigma? The impact of genetic attribution on stigma associated with rheumatic heart disease in the Western Cape, South Africa. Soc Sci Med 243:112619
Tekola F, Bull S, Farsides B, Newport MJ, Adeyemo A, Rotimi CN, Davey G (2009) Impact of social stigma on the process of obtaining informed consent for genetic research on podoconiosis: a qualitative study. BMC Med Ethics 10(1):13. https://doi.org/10.1186/1472-6939-10-13
Marsh VM, Kamuya DM, Molyneux SS (2011) 'All her children are born that way’: gendered experiences of stigma in families affected by sickle cell disorder in rural Kenya. Ethn Health 16(4–5):343–359. https://doi.org/10.1080/13557858.2010.541903
Adewuya AO, Owoeye AO, Erinfolami A, Ola BA (2011) Correlates of self-stigma among outpatients with mental illness in Lagos. Nigeria Int J Soc Psychiatry 57(4):418–427
Adewuya AO, Oguntade AA (2007) Doctors’ attitude towards people with mental illness in Western Nigeria. Social Psychiatr Psychiatr Epidemiol 42(11):931–936
Patel V (1995) Explanatory models of mental illness in sub-Saharan Africa. Soc Sci Med 40(9):1291–1298
Sorsdahl KR, Flisher A, Wilson Z, Stein D (2010) Explanatory models of mental disorders and treatment practices among traditional healers in Mpumulanga South Africa. Afr J Psychiatry 13(4):284–290
Bantjes J, Swartz L, Cembi SJTp (2018) “Our lifestyle is a mix-match”: Traditional healers talk about suicide and suicide prevention in South Africa. Transcult psychiatry 55(1):73–93
Mbanga N, Niehaus D, Mzamo N, Wessels C, Allen A, Emsley R, Stein D (2002) Attitudes towards and beliefs about schizophrenia in Xhosa families with affected probands. Curationis 25(1):69–73
Hugo CJ, Boshoff DE, Traut A, Zungu-Dirwayi N, Stein DJJSp (2003) Community attitudes toward and knowledge of mental illness in South Africa. Soc Psychiatry Psychiatr Epidemiol 38(12):715–719
Naanyu V (2010) Social context and mental illness stigma in South Africa: Ghost. VDM Publishing, Riga
Botha UA, Koen L, Niehaus DJH (2006) Perceptions of a South African schizophrenia population with regards to community attitudes towards their illness. Soc Psychiatry Psychiatr Epidemiol 41(8):619–623. https://doi.org/10.1007/s00127-006-0071-1
Pescosolido BA, Martin JK (2015) The stigma complex. Annu Rev Sociol 41:87–116
Gray DE (2002) ‘Everybody just freezes. Everybody is just embarrassed’ Felt and enacted stigma among parents of children with high functioning autism. Sociol Health Illn 24(6):734–749
Corrigan PW, Watson AC (2002) Understanding the impact of stigma on people with mental illness. World Psychiatry 1(1):16–20
Livingston JD, Boyd JE (2010) Correlates and consequences of internalized stigma for people living with mental illness: a systematic review and meta-analysis. Soc Sci Med 71(12):2150–2161. https://doi.org/10.1016/j.socscimed.2010.09.030
Catthoor K, Hutsebaut J, Schrijvers D, De Hert M, Peuskens J, Sabbe B (2014) Preliminary study of associative stigma among trainee psychiatrists in Flanders. Belgium World J Psychiatry 4(3):62
Gulsuner S, Stein D, Susser E, Sibeko G, Pretorius A, Walsh T, Majara L, Mndini M, Mqulwana S, Ntola O (2020) Genetics of schizophrenia in the South African Xhosa. Science 367(6477):569–573
Braun V, Clarke V (2012) Thematic analysis. In: Cooper H (ed) APA handbook of research methods in psychology, vol 2. American Psychological Association, Washington, DC
Siccama CJ, Penna S (2008) Enhancing validity of a qualitative dissertation research study by using NVivo. Qual Res J 8(2):91–103
Campbell MM, Sibeko G, Mall S, Baldinger A, Nagdee M, Susser E, Stein DJ (2017) The content of delusions in a sample of South African Xhosa people with schizophrenia. BMC Psychiatry 17(1):41. https://doi.org/10.1186/s12888-017-1196-3
Swartz L (1998) Culture and mental health: a Southern African view. Oxford University Press, South Africa
Thornicroft G, Rose D, Kassam A, Sartorius N (2007) Stigma: ignorance, prejudice or discrimination? Br J Psychiatry 190(3):192–193. https://doi.org/10.1192/bjp.bp.106.025791
González-Torres MA, Oraa R, Arístegui M, Fernández-Rivas A, Guimon J (2007) Stigma and discrimination towards people with schizophrenia and their family members. Soc Psychiatry Psychiatr Epidemiol 42(1):14–23
Schulze B, Angermeyer MC (2003) Subjective experiences of stigma A focus group study of schizophrenic patients, their relatives and mental health professionals. Soc Sci Med 56(2):299–312. https://doi.org/10.1016/S0277-9536(02)00028-X
Harangozo J, Reneses B, Brohan E, Sebes J, Csukly G, Lopez-Ibor JJ, Sartorius N, Rose D, Thornicroft G (2014) Stigma and discrimination against people with schizophrenia related to medical services. Int J Soc Psychiatry 60(4):359–366. https://doi.org/10.1177/0020764013490263
Condit CM, Gronnvoll M, Landau J, Shen LJ, Wright L, Harris TM (2009) Believing in both genetic determinism and behavioral action: a materialist framework and implications. Public Underst Sci 18(6):730–746. https://doi.org/10.1177/0963662508094098
Need AC, Goldstein DB (2014) Schizophrenia genetics comes of age. Neuron 83(4):760–763. https://doi.org/10.1016/j.neuron.2014.08.015
Sullivan PF, Kendler KS, Neale MC (2003) Schizophrenia as a complex trait - Evidence from a meta-analysis of twin studies. Arch Gen Psychiatry 60(12):1187–1192. https://doi.org/10.1001/archpsyc.60.12.1187
Mayosi BM, Flisher AJ, Lalloo UG, Sitas F, Tollman SM, Bradshaw D (2009) The burden of non-communicable diseases in South Africa. Lancet 374(9693):934–947. https://doi.org/10.1016/S0140-6736(09)61087-4
Campbell MM, Susser E, Mall S, Mqulwana SG, Mndini MM, Ntola OA, Nagdee M, Zingela Z, Van Wyk S, Stein DJ (2017) Using iterative learning to improve understanding during the informed consent process in a South African psychiatric genomics study. PLoS ONE 12(11):1–11
Luckhoff M, Koen L, Jordaan E, Niehaus D (2014) Attempted suicide in a Xhosa schizophrenia and schizoaffective disorder population. Suicide Life Threat Behav 44(2):167–174. https://doi.org/10.1111/sltb.12066
Acknowledgements
We would like to acknowledge and thank the Genomics of Schizophrenia in South African Xhosa project team, including Dr Adele Pretorius, Dr Goodman Sibeko, Bronwyn Malagas, Michael Mndini, Sibonile Mqulwana, Ziyanda Gemashe, Odwa Ntola, and Bubele Makeleni, who assisted with identifying patients and sites for recruitment of participants in this study.
Funding
This work was part of the “Stigma in African Genomics research on schizophrenia and rheumatic heart disease” – PI: Jantina de Vries, funded by the National Institutes of Health (Grant No: 1U01HG008226-01) and a member of the H3Africa Consortium (www.h3africa.org). The work also received funding from the National Research Foundation (Grant Number: 107664) and the Harry Crossley Foundation—PI: Olivia Matshabane.
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All eight authors contributed to the conceptualisation of the work. OM conducted the research. All authors commented on the findings and data analysis strategy. OM wrote the first draft and all authors commented. Revisions were made by OM and all the other authors agreed to the suitability of the final manuscript. JdV and MC provided supervision of the work.
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On behalf of all authors, the corresponding author states that there is no conflict of interest. All authors are not aware of any affiliations, memberships, funding, or financial holdings that might be perceived as affecting the objectivity of the review.
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Matshabane, O.P., Campbell, M.M., Faure, M.C. et al. Exploring how a genetic attribution to disease relates to stigma experiences of Xhosa patients with schizophrenia in South Africa. Soc Psychiatry Psychiatr Epidemiol 55, 1679–1686 (2020). https://doi.org/10.1007/s00127-020-01875-z
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DOI: https://doi.org/10.1007/s00127-020-01875-z