Skip to main content

Advertisement

SpringerLink
Log in

HIV Disclosure Among Pregnant Women Initiating ART in Cape Town, South Africa: Qualitative Perspectives During the Pregnancy and Postpartum Periods

  • Original Paper
  • Published:
AIDS and Behavior Aims and scope Submit manuscript

Abstract

For women enrolled in prevention of mother-to-child transmission (PMTCT) programs, non-disclosure of their HIV status can be a significant barrier to sustained HIV care engagement. To explore decision-making surrounding HIV disclosure among HIV-infected pregnant women, we conducted repeated in-depth interviews during pregnancy and postpartum with 20 women recruited from a PMTCT clinic in Cape Town, South Africa. Three domains were examined using thematic analysis: (1) disclosure experiences, (2) challenges associated with partner disclosure, and (3) implications of nondisclosure. All women had disclosed to someone by the time of the baby’s birth, typically limiting their disclosure to trusted individuals. Only half of participants disclosed to the father of the child. Nondisclosure, particularly to partners, was a significant source of worry and stress. Women used pregnancy as an explanation for using medication and attending frequent clinic appointments, and recognized impending challenges in the postpartum period when this excuse would no longer apply. Results suggest that PMTCT programs have a key role to play in helping individuals to make decisions about HIV disclosure, and assisting patients to navigate the disclosure process, especially with partners.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

References

  1. World Health Organization. Programmatic update: use of antiretroviral drugs for treating pregnant women and preventing HIV infection in infants. World Health Organization; 2012. http://www.who.int/hiv/PMTCT_update.pdf. Accessed 14 Nov 2017

  2. Knettel BA, Cichowitz C, Ngocho JS, Knippler ET, Chumba LN, Mmbaga BT, et al. Retention in HIV care during pregnancy and the postpartum period in the option B+ era: a systematic review and meta-analysis of studies in Africa. J Acquir Immune Defic Syndr. 2018;77(5):427–38.

    Article  PubMed  PubMed Central  Google Scholar 

  3. Evangeli M, Wroe AL. HIV disclosure anxiety: a systematic review and theoretical synthesis. AIDS Behav. 2017;21(1):1–11.

    Article  PubMed  Google Scholar 

  4. Pinkerton SD, Galletly CL. Reducing HIV transmission risk by increasing serostatus disclosure: a mathematical modeling analysis. AIDS Behav. 2007;11(5):698–705.

    Article  PubMed  Google Scholar 

  5. Ekama SO, Herbertson EC, Addeh EJ, Gab-Okafor CV, Onwujekwe DI, Tayo F, et al. Pattern and determinants of antiretroviral drug adherence among nigerian pregnant women. J Pregnancy; 2012.

  6. Spangler SA, Onono M, Bukusi EA, Cohen CR, Turan JM. HIV-positive status disclosure and use of essential PMTCT and maternal health services in rural Kenya. J Acquir Immune Defic Syndr. 2014;67(Suppl 4):S235–42.

    Article  PubMed  PubMed Central  Google Scholar 

  7. Tam M, Amzel A, Phelps BR. Disclosure of HIV serostatus among pregnant and postpartum women in sub-Saharan Africa: a systematic review. AIDS Care. 2015;27(4):436–50.

    Article  PubMed  Google Scholar 

  8. Mnyani CN, McIntyre J. Challenges to delivering quality care in a prevention of mother-to-child transmission of HIV programme in Soweto, South Africa. Southern Afr J HIV Med. 2013;14(2):64.

    Article  Google Scholar 

  9. Peltzer K, Chao L-W, Dana P. Family planning among HIV positive and negative prevention of mother to child transmission (PMTCT) clients in a resource poor setting in South Africa. AIDS Behav. 2009;13(5):973–9.

    Article  PubMed  Google Scholar 

  10. Medley A, Garcia-Moreno C, McGill S, Maman S. Rates, barriers and outcomes of HIV serostatus disclosure among women in developing countries: implications for prevention of mother-to-child transmission programmes. Bull World Health Organ. 2004;82(4):299–307.

    PubMed  PubMed Central  Google Scholar 

  11. Naigino R, Makumbi F, Mukose A, Buregyeya E, Arinaitwe J, Musinguzi J, et al. HIV status disclosure and associated outcomes among pregnant women enrolled in antiretroviral therapy in Uganda: a mixed methods study. Reprod Health. 2017;14(1):107.

    Article  PubMed  PubMed Central  Google Scholar 

  12. Adeniyi OV, Ajayi AI, Selanto-Chairman N, Goon DT, Boon G, Fuentes YO, et al. Demographic, clinical and behavioural determinants of HIV serostatus non-disclosure to sex partners among HIV-infected pregnant women in the Eastern Cape, South Africa. PLoS ONE. 2017;12(8):e0181730.

    Article  PubMed  PubMed Central  Google Scholar 

  13. Madiba S, Letsoalo R. HIV disclosure to partners and family among women enrolled in prevention of mother to child transmission of HIV program: implications for infant feeding in poor resourced communities in South Africa. Glob J Health Sci. 2013;5(4):1–13.

    Article  PubMed  PubMed Central  Google Scholar 

  14. Visser MJ, Neufeld S, de Villiers A, Makin JD, Forsyth BWC. To tell or not to tell: south African women’s disclosure of HIV status during pregnancy. AIDS Care. 2008;20(9):1138–45.

    Article  PubMed  PubMed Central  Google Scholar 

  15. Crankshaw TL, Voce A, King RL, Giddy J, Sheon NM, Butler LM. Double disclosure bind: complexities of communicating an HIV diagnosis in the context of unintended pregnancy in Durban, South Africa. AIDS Behav. 2014;18(Suppl 1):S53–9.

    Article  PubMed  Google Scholar 

  16. Smith R, Rossetto K, Peterson BL. A meta-analysis of disclosure of one’s HIV-positive status, stigma and social support. AIDS Care. 2008;20(10):1266–75.

    Article  PubMed  Google Scholar 

  17. Olley BO, Ogunde MJ, Oso PO, Ishola A. HIV-related stigma and self-disclosure: the mediating and moderating role of anticipated discrimination among people living with HIV/AIDS in Akure Nigeria. AIDS Care. 2016;28(6):726–30.

    Article  CAS  PubMed  Google Scholar 

  18. Kimberly JA, Serovich JM, Greene K. Disclosure of HIV-positive status: five women’s stories. Fam Relat. 1995;44(3):316.

    Article  Google Scholar 

  19. Turan B, Hatcher AM, Weiser SD, Johnson MO, Rice WS, Turan JM. Framing mechanisms linking HIV-related stigma, adherence to treatment, and health outcomes. Am J Public Health. 2017;107(6):863–9.

    Article  PubMed  PubMed Central  Google Scholar 

  20. Myer L, Phillips TK. Beyond “Option B+”: understanding antiretroviral therapy (ART) adherence, retention in care and engagement in ART services among pregnant and postpartum women initiating therapy in Sub-Saharan Africa. J Acquir Immune Defic Syndr. 2017;1(75 Suppl 2):S115–22.

    Article  Google Scholar 

  21. Catz SL, Kelly JA, Bogart LM, Benotsch EG, McAuliffe TL. Patterns, correlates, and barriers to medication adherence among persons prescribed new treatments for HIV disease. Health Psychol. 2000;19(2):124–33.

    Article  CAS  PubMed  Google Scholar 

  22. Klitzman RL, Kirshenbaum SB, Dodge B, Remien RH, Ehrhardt AA, Johnson MO, et al. Intricacies and inter-relationships between HIV disclosure and HAART: a qualitative study. AIDS Care. 2004;16(5):628–40.

    Article  CAS  PubMed  Google Scholar 

  23. Kelly JD, Hartman C, Graham J, Kallen MA, Giordano TP. Social support as a predictor of early diagnosis, linkage, retention, and adherence to HIV care: results from the steps study. J Assoc Nurses AIDS Care. 2014;25(5):405–13.

    Article  PubMed  PubMed Central  Google Scholar 

  24. Gonzalez JS, Penedo FJ, Antoni MH, Durán RE, McPherson-Baker S, Ironson G, et al. Social support, positive states of mind, and HIV treatment adherence in men and women living with HIV/AIDS. Health Psychol. 2004;23(4):413–8.

    Article  PubMed  Google Scholar 

  25. South Africa, National Department of Health. The 2015 National Antenatal Sentinel HIV and Syphilis Survey; 2017.

  26. Department of Health. National consolidated guidelines for the prevention of mother-to-child transmission of HIV (PMTCT) and the management of HIV in children, adolescents and adults. Pretoria: National Department of Health, Republic of South Africa; 2015.

    Google Scholar 

  27. Guest G, MacQueen KM, Namey EE. Applied thematic analysis. Thousand Oaks: SAGE; 2012.

    Book  Google Scholar 

  28. Charmaz K. Constructing grounded theory. 2nd ed. Thousand Oaks: SAGE; 2014.

    Google Scholar 

  29. Birks M, Chapman Y, Francis K. Memoing in qualitative research: probing data and processes. J Res Nurs. 2008;13(1):68–75.

    Article  Google Scholar 

  30. Miles MB. Qualitative data analysis: an expanded sourcebook. Thousand Oaks: SAGE; 1994.

    Google Scholar 

  31. King R, Katuntu D, Lifshay J, Packel L, Batamwita R, Nakayiwa S, et al. Processes and outcomes of HIV serostatus disclosure to sexual partners among people living with HIV in Uganda. AIDS Behav. 2008;12(2):232–43.

    Article  PubMed  Google Scholar 

  32. Obermeyer CM, Baijal P, Pegurri E. Facilitating HIV disclosure across diverse settings: a review. Am J Public Health. 2011;101(6):1011–23.

    Article  PubMed  PubMed Central  Google Scholar 

  33. Earnshaw VA, Smith LR, Chaudoir SR, Amico KR, Copenhaver MM. HIV stigma mechanisms and well-being among PLWH: a test of the HIV stigma framework. AIDS Behav. 2013;17(5):1785–95.

    Article  PubMed  PubMed Central  Google Scholar 

  34. Stinson K, Myer L. Barriers to initiating antiretroviral therapy during pregnancy: a qualitative study of women attending services in Cape Town, South Africa. Afr J AIDS Res. 2012;11(1):65–73.

    Article  PubMed  Google Scholar 

  35. Shamu S, Zarowsky C, Shefer T, Temmerman M, Abrahams N. Intimate partner violence after disclosure of HIV test results among pregnant women in Harare, Zimbabwe. PLoS ONE. 2014;9(10):e109447.

    Article  PubMed  PubMed Central  Google Scholar 

  36. Vu L, Andrinopoulos K, Mathews C, Chopra M, Kendall C, Eisele TP. Disclosure of HIV status to sex partners among HIV-infected men and women in Cape Town, South Africa. AIDS Behav. 2012;16(1):132–8.

    Article  PubMed  Google Scholar 

  37. Masters SH, Agot K, Obonyo B, Napierala Mavedzenge S, Maman S, Thirumurthy H. Promoting partner testing and couples testing through secondary distribution of HIV self-tests: a randomized clinical trial. PLOS Med. 2016;13(11):e1002166.

    Article  PubMed  PubMed Central  Google Scholar 

  38. Aluisio A, Richardson BA, Bosire R, John-Stewart G, Mbori-Ngacha D, Farquhar C. Male antenatal attendance and HIV testing are associated with decreased infant HIV infection and increased HIV-free survival. J Acquir Immune Defic Syndr. 2011;56(1):76–82.

    Article  PubMed  PubMed Central  Google Scholar 

  39. Medley A, Baggaley R, Bachanas P, Cohen M, Shaffer N, Lo Y-R. Maximizing the impact of HIV prevention efforts: interventions for couples. AIDS Care. 2013;25(12):1569–80.

    Article  PubMed  PubMed Central  Google Scholar 

  40. Musheke M, Ntalasha H, Gari S, Mckenzie O, Bond V, Martin-Hilber A, et al. A systematic review of qualitative findings on factors enabling and deterring uptake of HIV testing in Sub-Saharan Africa. BMC Public Health. 2013;13:220.

    Article  PubMed  PubMed Central  Google Scholar 

  41. Hardon A, Vernooij E, Bongololo-Mbera G, Cherutich P, Desclaux A, Kyaddondo D, et al. Women’s views on consent, counseling and confidentiality in PMTCT: a mixed-methods study in four African countries. BMC Public Health. 2012;12:26.

    Article  PubMed  PubMed Central  Google Scholar 

  42. Paudel V, Baral KP. Women living with HIV/AIDS (WLHA), battling stigma, discrimination and denial and the role of support groups as a coping strategy: a review of literature. Reprod Health. 2015;12:53.

    Article  PubMed  PubMed Central  Google Scholar 

  43. Simoni JM, Nelson KM, Franks JC, Yard SS, Lehavot K. Are peer interventions for HIV efficacious? A systematic review. AIDS Behav. 2011;15(8):1589–95.

    Article  PubMed  PubMed Central  Google Scholar 

  44. Richter L, Rotheram-Borus MJ, Van Heerden A, Stein A, Tomlinson M, Harwood JM, et al. Pregnant women living with HIV (WLH) supported at clinics by peer WLH: a cluster randomized controlled trial. AIDS Behav. 2014;18(4):706–15.

    Article  PubMed  PubMed Central  Google Scholar 

  45. Myer L, Phillips T, McIntyre J, Hsiao N-Y, Petro G, Zerbe A, et al. HIV viraemia and mother-to-child transmission risk after antiretroviral therapy initiation in pregnancy in Cape Town, South Africa. HIV Med. 2017;18(2):80–8.

    Article  CAS  PubMed  Google Scholar 

  46. Mead N, Bower P. Patient-centred consultations and outcomes in primary care: a review of the literature. Patient Educ Couns. 2002;48(1):51–61.

    Article  PubMed  Google Scholar 

  47. Epstein RM, Street RL. The values and value of patient-centered care. Ann Fam Med. 2011;9(2):100–3.

    Article  PubMed  PubMed Central  Google Scholar 

  48. Dwamena F, Holmes-Rovner M, Gaulden CM, Jorgenson S, Sadigh G, Sikorskii A, et al. Interventions for providers to promote a patient-centred approach in clinical consultations. Cochrane Database Syst Rev. 2012;12:CD003267.

    PubMed  Google Scholar 

  49. Geubbels E, Williams A, Ramaiya A, Tancredi D, Young S, Chantry C. HIV status disclosure among postpartum women in rural Tanzania: predictors, experiences and uptake of a nurse-facilitated disclosure intervention. AIDS Care. 2018;24:1–9.

    Google Scholar 

Download references

Acknowledgements

This study was funded by a grant from the Duke University Center for AIDS Research (P30 AI064518) and supported by a grant from the National Institute of Mental Health (R34 MH102001). The first author was a scholar in the UCLA HIV/AIDS, Substance Abuse and Trauma Training Program (R25 DA035692). The research team is grateful for the support of the Western Cape Provincial Department of Health, the clinic administrators and health care providers, and the patients who contributed to this research.

Author information

Authors and Affiliations

  1. Duke Global Health Institute, Duke University, Box 90519, Durham, NC, 27708-0086, USA

    Melissa H. Watt, Elizabeth T. Knippler, Brandon A. Knettel & Kathleen J. Sikkema

  2. Department of Psychology and Neuroscience, Duke University, Durham, NC, USA

    Kathleen J. Sikkema

  3. Department of Psychiatry and Mental Health, University of Cape Town, Cape Town, South Africa

    Kathleen J. Sikkema, Nonceba Ciya & John A. Joska

  4. Division of Epidemiology & Biostatistics, School of Public Health & Family Medicine, University of Cape Town, Cape Town, South Africa

    Landon Myer

Authors
  1. Melissa H. Watt
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Elizabeth T. Knippler
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Brandon A. Knettel
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Kathleen J. Sikkema
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Nonceba Ciya
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Landon Myer
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. John A. Joska
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Melissa H. Watt.

Ethics declarations

Conflict of interest

All authors declare that they have no conflicts of interest.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards (Duke C0784, UCT 032/2015).

Informed Consent

Informed consent was obtained from all individual participants included in the study.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Watt, M.H., Knippler, E.T., Knettel, B.A. et al. HIV Disclosure Among Pregnant Women Initiating ART in Cape Town, South Africa: Qualitative Perspectives During the Pregnancy and Postpartum Periods. AIDS Behav 22, 3945–3956 (2018). https://doi.org/10.1007/s10461-018-2272-5

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10461-018-2272-5

Keywords

Search

Navigation