“What If He Tells Others”: Negotiating Disclosure of Children’s HIV-Positive Status Amid Stigma in a South African Rural Community
DOI:
https://doi.org/10.25159/2957-3645/16465Keywords:
HIV, stigma, South Africa, disclosure, children, parents, caregiversAbstract
In this study, we explore how HIV-related social stigma in a South African rural township community informs parents’ and caregivers’ decisions to disclose their children’s HIV-positive status to them. To achieve the aim of the study, we conducted qualitative in-depth interviews with 12 parents and caregivers of HIV-positive children between the ages of seven and 14 years in a rural area based in Mpumalanga in South Africa. We found that, despite the development in HIV education across the country, HIV-related stigma is prevalent at a social level in rural townships and serves as a barrier to disclosing children’s HIV-positive status. We established that the parents and caregivers use “passing” as a stigma management strategy where they conceal their children’s HIV-positive status from them and instead tell them that they are infected with less stigmatised medical conditions such as asthma and tuberculosis. Based on these findings, we argue that, although education on HIV is widespread in South Africa, HIV-related stigma is still prevalent in some rural townships. This stigma compels parents and caregivers to avoid disclosing their children’s HIV-positive status to them and instead employ stigma management strategies that will maintain the concealment of their children’s HIV status.
References
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Jantarapakde, J., Pancharoen, C., Teeratakulpisarn, S., Mathajittiphan, P., Kriengsinyot, R., Channgam, T., Pengnonyang, S., Plodgratok, P., Lakhonphon, S., Luesomboon, W., Jadwattanakul, T., Avihingsanon, A., Ananworanich, J., Ungaro, P., & Phanuphak, P. (2019). An integrated approach to HIV disclosure for HIV-affected families in Thailand. Journal of the International Association of Providers of AIDS Care, 18, 1–7. https://doi.org/10.1177/2325958219831021
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Kalembo, F. W., Kendall, G. E., Ali, M., & Chimwaza, A. F. (2019). Socio-demographic, clinical, and psychosocial factors associated with primary caregivers’ decisions regarding HIV disclosure to their child aged between 6 and 12 years living with HIV in Malawi. PLoS ONE, 14(1), e0210781. https://doi.org/10.1371/journal.pone.0210781
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Kiwanuka, J., Mulogo, E., & Haberer, J. E. (2014). Caregiver perceptions and motivation for disclosing or concealing the diagnosis of HIV infection to children receiving HIV care in Mbarara, Uganda: A qualitative study. PLoS ONE, 9(3), 1–9. https://doi.org/10.1371/journal.pone.0093276
Lindberg, L. D., Maddow-Zimet, I., & Marcell, A. V. (2019). Prevalence of sexual initiation before age 13 years among male adolescents and young adults in the United States. JAMA Paediatrics, 173(6), 553–560. https://doi.org/10.1001/jamapediatrics.2019.0458
Lyimo, R. A., De Bruin, M., Van den Boogaard, J., Hospers, H. J., Van der Ven, A., & Mushi, D. (2012). Determinants of antiretroviral therapy adherence in northern Tanzania: A comprehensive picture from the patient perspective. BMC Public Health, 12, 1–8: https://doi.org/10.1186/1471-2458-12-716
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Madiba, S., & Matlala, C. (2012). Disclosure of parental HIV positive status: What, why, when, and how parents tell their children in the era of HAART in South Africa. World Journal of AIDS, 2(3), 194–202. https://doi.org/10.4236/wja.2012.23025
Msoka, P. C., Mtesha, B. A., Masika, L., Maro, R., Swai, I., Emmanuel, N., Ngowi, K., & Sumari-de Boer, M. (2023). “We can tell them, but not right now”—HIV status disclosure and related factors among children aged 6–14 years living with HIV in Kilimanjaro region, Tanzania. Research Square. https://doi.org/10.21203/rs.3.rs-2705022/v1
Mugo, C., Firdawsi, O., Wang, J., Njuguna, I. N., Wamalwa, D. C., Slyker, J. A., John-Stewart, G. C., O’Malley, G., & Wagner, A. D. (2023). “When they are all grown, I will tell them”: Experience and perceptions of parental self-disclosure of HIV status to children in Nairobi, Kenya. BMC Public Health, 23, 519. https://doi.org/10.1186/s12889-023-15387-3
Naidoo, G. D., & McKerrow, N. H. (2015). Current practices around HIV disclosure to children on highly active antiretroviral therapy. South African Journal of Child Health, 9(3), 85–88. https://doi.org/10.7196/SAJCH.7957
Namukwaya, S., Paparini, S., Seeley, J., & Bernays, S. (2017). “How do we start? And how will they react?” Disclosing to young people with perinatally acquired HIV in Uganda. Frontiers in Public Health, 5, 1–10. https://doi.org/10.3389/fpubh.2017.00343
O’Malley, G., Beima-Sofie, K., Ferris, L., Shepard-Perry, M., Hamunime, N., John-Steward, G., Kaindjee-Tjituka, F., & Brandt, L. (2015). “If I take my medicine, I will be strong”: Evaluation of a pediatric HIV disclosure intervention in Namibia. Journal of Acquired Immune Deficiency Syndrome, 68(1), 1–7. https://doi.org/10.1097/QAI.0000000000000387
Placek, C. D., Nishimura, H., Hudanick, N., Stephens, D., & Madhivanan, P. (2019). Reframing HIV stigma and fear: Considerations from socio-ecological and evolutionary theories of reproduction. Human Nature, 30(1), 1–22. https://doi.org/10.1007/s12110-018-09335-z
Ramsammy, C. W., Galvin, L., Joyce, C., Leshabane, J. B., Buckley, J., Otwombe, K., Liberty, A., & Violari, A. (2022). Children’s positive and negative emotional responses to an HIV disclosure study in South Africa. Frontiers in Pediatrics, 10, 1–10. https://doi.org/10.3389/fped.2022.857336
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Rochat, T. J., Mkwanazi, N., & Bland, R. (2013). Maternal HIV disclosure to HIV-uninfected children in rural South Africa: A pilot study of a family-based intervention. BMC Public Health, 13, 1–16. https://doi.org/10.1186/1471-2458-13-147
Sabharwal, S., Mitchell, J. W., & Fan, V. Y. (2018). Should there be a disclosure mandate for physicians caring for perinatally infected adolescents who don’t know their HIV serostatus? AMA Journal of Ethics, 20(8): 743–749. https://doi.org/10.1001/amajethics.2018.743
UNAIDS. (2023). The path that ends AIDS: UNAIDS global AIDS update 2023. Geneva: Joint United Nations Programme on HIV/AIDS. https://www.unaids.org/en/resources/documents/2023/global-aids-update-2023
United Nations. (1989). Convention on the rights of the child. https://www.ohchr.org/sites/default/files/crc.pdf
Van Elsland, S. L., Peters, R. P. H., Grobbelaar, C., Ketelo, P., Kok. M. O., Cotton, M. F., & Van Furth, A. M. (2019). Disclosure of human immunodeficiency virus status to children in South Africa. A comprehensive analysis. South African Journal of HIV Medicine, 20(1), 1–10. https://doi.org/10.4102/sajhivmed.v20i1.884
Vaz, L. M. E., Eng, E., Maman, S., Tshikandu, T., & Behets, F. 2010. Telling children they have HIV: Lessons learned from findings of a qualitative study in sub-Saharan Africa. AIDS Patient Care and STDs, 24(4), 247–256. https://doi.org/10.1089/apc.2009.0217
Vreeman, R. C., Scanlon, M. L., Tu, W., Slaven, J., McAteer, C., Aluoch, J., Ayaya, S., & Nyandiko, W. M. (2019). Validation of an HIV/AIDS stigma measure for children living with HIV and their families. Journal of the International Association of Providers of AIDS Care, 18, 1–11. https://doi.org/10.1177/2325958219880570
Babbie, E. R., & Mouton, J. (2011). The practice of social research (12th ed.). Thompson Wadsworth.
Bingaman, A. R., Hamilton, A. B., Olivera, R., Crowell, C. S., & Fair, C. D. (2022). Literally the hardest part about having a positive child is disclosure: Child and family stigma management strategies among U.S. parents of internationally children with perinatally-acquired HIV. SSM—Qualitative Research in Health, 2, 100122. https://doi.org/10.1016/j.ssmqr.2022.100122
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
Braun, V., & Clarke, V. (2019). Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health, 11(4), 589–597. https://doi.org/10.1080/2159676X.2019.1628806
Campbell, C., & Cornish, F. (2010). Towards a “fourth generation” of approaches to HIV/AIDS management: Creating contexts for effective community mobilisation. AIDS Care, 22(2), 1569–1579. https://doi.org/10.1080/09540121.2010.525812
Department of Health. (2016). Disclosure guidelines for children and adolescents in the context of HIV, TB and non-communicable diseases. Department of Health.
Doat, A. R., Negarandeh, R., & Hasanpour, M. (2019). Disclosure of HIV status to children in sub-Saharan Africa: A systematic review. Medicina, 55(8), 433. https://doi.org/10.3390/medicina55080433
Goffman, E. 1963. Stigma: Notes on the management of a spoiled identity. Prentice-Hall.
Goodwin, T., Gregson, S., Maswera, R., Moorhouse, L., & Nyamukapa, C. (2021). Understanding the determinants and consequences of HIV status disclosure in Manicaland, Zimbabwe: Cross-sectional and prospective analyses. AIDS Care, 33(12), 1577–1594. https://doi.org/10.1080/09540121.2021.1883507
Hargreaves, S., James, R, Krishnaratne, S., Mathema, H., Lilleston, P., Sievwright, K., Mandla, N., Mainga, T., Vermaak, R., Piwowar-Manning, E., Schaap, A., Donnell, D., Ayles, H., Hayes, R., Hoddinott, G., Bond, V., & Stangl, A. (2018). Individual and community-level risk factors for HIV stigma in 21 Zambian and South African communities: Analysis of data from the HPTN071 (PopART) study. AIDS, 32(6), 783–793. https://doi.org/10.1097/QAD.0000000000001757
Hayfron-Benjamin, A., Obiri-Yeboah, D., Ayisi-Addo, S., Siakwa, P. M., & Mupepi, S. (2018). HIV diagnosis disclosure to infected children and adolescents; challenges of family caregivers in the central region of Ghana. BMC Pediatrics, 18, 365. https://doi.org.10.1186/s12887-018-1330-5
Jantarapakde, J., Pancharoen, C., Teeratakulpisarn, S., Mathajittiphan, P., Kriengsinyot, R., Channgam, T., Pengnonyang, S., Plodgratok, P., Lakhonphon, S., Luesomboon, W., Jadwattanakul, T., Avihingsanon, A., Ananworanich, J., Ungaro, P., & Phanuphak, P. (2019). An integrated approach to HIV disclosure for HIV-affected families in Thailand. Journal of the International Association of Providers of AIDS Care, 18, 1–7. https://doi.org/10.1177/2325958219831021
Joyce, C., Ramsammy, C., Galvin, L., Leshabane, G., Liberty, A., Otwombe, K., Buckley, J., Milovanovic, M., & Violari, A. (2022). Experiences of South African caregivers disclosing to their children living with HIV: Qualitative investigations. PloS ONE, 17(11), e0277202. https://doi.org/10.1371/journal.pone0277202
Kalembo, F. W., Kendall, G. E., Ali, M., & Chimwaza, A. F. (2019). Socio-demographic, clinical, and psychosocial factors associated with primary caregivers’ decisions regarding HIV disclosure to their child aged between 6 and 12 years living with HIV in Malawi. PLoS ONE, 14(1), e0210781. https://doi.org/10.1371/journal.pone.0210781
Khangale, H. M. M., Raliphaswa, N. S., & Tshililo, A. R. (2022). HIV status disclosure to adolescents who are perinatally infected in Rustenburg sub district Northwest province. Children, 9(12), 1989. https://doi.org/10.3390/children9121989
Kiwanuka, J., Mulogo, E., & Haberer, J. E. (2014). Caregiver perceptions and motivation for disclosing or concealing the diagnosis of HIV infection to children receiving HIV care in Mbarara, Uganda: A qualitative study. PLoS ONE, 9(3), 1–9. https://doi.org/10.1371/journal.pone.0093276
Lindberg, L. D., Maddow-Zimet, I., & Marcell, A. V. (2019). Prevalence of sexual initiation before age 13 years among male adolescents and young adults in the United States. JAMA Paediatrics, 173(6), 553–560. https://doi.org/10.1001/jamapediatrics.2019.0458
Lyimo, R. A., De Bruin, M., Van den Boogaard, J., Hospers, H. J., Van der Ven, A., & Mushi, D. (2012). Determinants of antiretroviral therapy adherence in northern Tanzania: A comprehensive picture from the patient perspective. BMC Public Health, 12, 1–8: https://doi.org/10.1186/1471-2458-12-716
Madiba, S., & Diko, C. (2021). Telling children with perinatal HIV about their HIV serostatus: Healthcare workers’ practices and barriers to disclosing in a South African rural health district. Journal of Primary Care & Community Health, 12: 1–23. https://doi.org/10.1177/2150132720984757
Madiba, S., & Matlala, C. (2012). Disclosure of parental HIV positive status: What, why, when, and how parents tell their children in the era of HAART in South Africa. World Journal of AIDS, 2(3), 194–202. https://doi.org/10.4236/wja.2012.23025
Msoka, P. C., Mtesha, B. A., Masika, L., Maro, R., Swai, I., Emmanuel, N., Ngowi, K., & Sumari-de Boer, M. (2023). “We can tell them, but not right now”—HIV status disclosure and related factors among children aged 6–14 years living with HIV in Kilimanjaro region, Tanzania. Research Square. https://doi.org/10.21203/rs.3.rs-2705022/v1
Mugo, C., Firdawsi, O., Wang, J., Njuguna, I. N., Wamalwa, D. C., Slyker, J. A., John-Stewart, G. C., O’Malley, G., & Wagner, A. D. (2023). “When they are all grown, I will tell them”: Experience and perceptions of parental self-disclosure of HIV status to children in Nairobi, Kenya. BMC Public Health, 23, 519. https://doi.org/10.1186/s12889-023-15387-3
Naidoo, G. D., & McKerrow, N. H. (2015). Current practices around HIV disclosure to children on highly active antiretroviral therapy. South African Journal of Child Health, 9(3), 85–88. https://doi.org/10.7196/SAJCH.7957
Namukwaya, S., Paparini, S., Seeley, J., & Bernays, S. (2017). “How do we start? And how will they react?” Disclosing to young people with perinatally acquired HIV in Uganda. Frontiers in Public Health, 5, 1–10. https://doi.org/10.3389/fpubh.2017.00343
O’Malley, G., Beima-Sofie, K., Ferris, L., Shepard-Perry, M., Hamunime, N., John-Steward, G., Kaindjee-Tjituka, F., & Brandt, L. (2015). “If I take my medicine, I will be strong”: Evaluation of a pediatric HIV disclosure intervention in Namibia. Journal of Acquired Immune Deficiency Syndrome, 68(1), 1–7. https://doi.org/10.1097/QAI.0000000000000387
Placek, C. D., Nishimura, H., Hudanick, N., Stephens, D., & Madhivanan, P. (2019). Reframing HIV stigma and fear: Considerations from socio-ecological and evolutionary theories of reproduction. Human Nature, 30(1), 1–22. https://doi.org/10.1007/s12110-018-09335-z
Ramsammy, C. W., Galvin, L., Joyce, C., Leshabane, J. B., Buckley, J., Otwombe, K., Liberty, A., & Violari, A. (2022). Children’s positive and negative emotional responses to an HIV disclosure study in South Africa. Frontiers in Pediatrics, 10, 1–10. https://doi.org/10.3389/fped.2022.857336
Republic of South Africa. (2005). Children’s Act, No. 38 of 2005. Government Printer.
Republic of South Africa. (2013). Protection of Personal Information Act, No. 4 of 2013. Government Printer.
Rochat, T. J., Mkwanazi, N., & Bland, R. (2013). Maternal HIV disclosure to HIV-uninfected children in rural South Africa: A pilot study of a family-based intervention. BMC Public Health, 13, 1–16. https://doi.org/10.1186/1471-2458-13-147
Sabharwal, S., Mitchell, J. W., & Fan, V. Y. (2018). Should there be a disclosure mandate for physicians caring for perinatally infected adolescents who don’t know their HIV serostatus? AMA Journal of Ethics, 20(8): 743–749. https://doi.org/10.1001/amajethics.2018.743
UNAIDS. (2023). The path that ends AIDS: UNAIDS global AIDS update 2023. Geneva: Joint United Nations Programme on HIV/AIDS. https://www.unaids.org/en/resources/documents/2023/global-aids-update-2023
United Nations. (1989). Convention on the rights of the child. https://www.ohchr.org/sites/default/files/crc.pdf
Van Elsland, S. L., Peters, R. P. H., Grobbelaar, C., Ketelo, P., Kok. M. O., Cotton, M. F., & Van Furth, A. M. (2019). Disclosure of human immunodeficiency virus status to children in South Africa. A comprehensive analysis. South African Journal of HIV Medicine, 20(1), 1–10. https://doi.org/10.4102/sajhivmed.v20i1.884
Vaz, L. M. E., Eng, E., Maman, S., Tshikandu, T., & Behets, F. 2010. Telling children they have HIV: Lessons learned from findings of a qualitative study in sub-Saharan Africa. AIDS Patient Care and STDs, 24(4), 247–256. https://doi.org/10.1089/apc.2009.0217
Vreeman, R. C., Scanlon, M. L., Tu, W., Slaven, J., McAteer, C., Aluoch, J., Ayaya, S., & Nyandiko, W. M. (2019). Validation of an HIV/AIDS stigma measure for children living with HIV and their families. Journal of the International Association of Providers of AIDS Care, 18, 1–11. https://doi.org/10.1177/2325958219880570
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2024-10-23
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Mashile, C. T., & Maake, T. B. (2024). “What If He Tells Others”: Negotiating Disclosure of Children’s HIV-Positive Status Amid Stigma in a South African Rural Community. Social and Health Sciences, 18 pages . https://doi.org/10.25159/2957-3645/16465
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