To tell or not to tell: Making sense of HIV disclosure

HIV disclosure varies depending on the HIV status of the other partner in the relationship, but safer sex doesn’t necessarily follow, finds a study by MOTLATSO MLAMBO and KARL PELTZER.


As the HIV pandemic continues to spread rapidly, with an estimated 5.7 million people living with HIV and AIDS in South Africa in 2009, HIV-positive people face ongoing decisions regarding disclosure of their status. In Mpumalanga, the HIV prevalence increased from 14.1% in 2002, to 15.2% in 2005, to 15.4% in 2008.


HIV disclosure is an essential aspect in the prevention, care, treatment of and support for HIV-infected people. Disclosure of HIV-positive status is also an important part of coping with the disease, and understanding the circumstances surrounding it is critical in both the prevention of HIV and mitigation of its impact.


Disclosing one's HIV status has been shown to decrease the risk of transmitting the disease to sexual partners and may alleviate the stressful burden of concealment, increase material and emotional support, facilitate shared responsibility for safer sex practices, as well as acceptance of one's condition. It has also been noted that, from a public health perspective, HIV disclosure has been encouraged primarily because of its contribution towards HIV-transmission reduction, including condom use and HIV testing of the sexual partner.

Do ARVs provide false confidence?

 It has been shown that sexual behaviour of people taking antiretrovirals (ARVs) might pose a challenge. It is possible that sexual risk-taking may increase with ART, especially once the sufferer’s health improves and sexual activity is resumed. Studies show an increase of acquiring sexually transmitted infections (STIs) among heterosexual people receiving ART. Research conducted in African settings also suggests that, although some risk behaviours actually decrease with ART, a substantial proportion continues to have unsafe sex, even with partners known to be HIV-negative.

The aim of this study was to assess HIV sero-status (presence of HIV in the blood) disclosure and sexual behaviour among 90 HIV-positive patients who are on ART in a public hospital in Mpumalanga, in order to assess risky behavior and interventions that may be needed.

The participants in this study were found to be in the following types of relationships:

  • 21% in sero-concordant relationships (both partners have HIV); 13% in sero-discordant relationships (only one partner has HIV);
  • 53% were in a relationship in which the HIV status of one partner was unknown.

Why tell?

For participants who were in sero-concordant relationships, HIV disclosure was mostly influenced by the following factors: poor health, pregnancy, death and sero-sorting (practice of using HIV status as a decision-making point in choosing sexual behaviour).


Because of the above factors, the other partner would feel obliged to also test for HIV, often finding they were also HIV-positive. Other partners were forced by circumstances, like a child’s death, to test together for HIV. Some had met each other when they went to collect the ARVs, and therefore did not have any difficulties of disclosing their HIV status (sero-sorting).


The following varying post-HIV disclosure behaviour patterns were noted in sero-concordant relationships: partner togetherness; partner separation and sero-sorting. For participants in sero-discordant relationships, three scenarios prevailed: separation from partner after HIV-positive diagnosis (mostly women deserted by their boyfriends); partners living together with non-disclosure; and partners living together after HIV disclosure. In some instances the discordant status is only known to the person who has tested positive, for fear of being rejected. In very few cases, partners test together and find that one is negative and one positive, and still stay together.


For participants in a relationship where the HIV status of the other partner is unknown, reasons for nondisclosure included the relationship being new; a relationship ending; men's refusal to share results; men postponing testing; having no steady partner; not wanting to be blamed; partner violence; not ready to disclose; fear of losing the relationship; and not knowing how to disclose.

Actions taken post-HIV disclosure

Most participants in sero-concordant relationships (21%) tried to use or were using condoms after learning about their HIV status, though some expressed a desire to have children. Most of the participants in sero-discordant relationships used condoms.


Among participants with partners with unknown status, some were using protection, but since most of them did not disclose their status to their partners, they would give alternative reasons for this, including being weak, sick, not trusting the partner and fear of infection.


There were also a few cases whereby participants continued to have unprotected sex even though they knew their status very well. The reasons they gave are that partners do not want to use condoms; they like it; or they fear losing their marriage.

Safer, but not when it matters most

 The results of this study found a decrease of unsafe sex among sero-concordant and sero-discordant partners, but for partners with one whose status is unknown there was no relationship between disclosure and safer sex. In order to aid disclosure between partners, there is a need to improve intimate dialogues between sexual partners, paying careful attention to women living with abusive partners.

There is also a need for wider initiatives to challenge prevailing gender stereotypes. Intervention strategies need to identify why HIV-positive people may or may not decide to disclose their HIV status.

The results show that some ART patients continued having unprotected sexual intercourse without disclosing their status even though they knew they were HIV-positive. This shows how imperative disclosure strategies are. Also, understanding the disclosure patterns among the sero-concordant partners, sero-discordant partners, and partners with unknown status will be essential for tailoring intervention strategies. This study may help HIV/AIDS service providers to develop more effective counselling protocols.

Authors: Motlatso Mlambo, chief researcher, and Prof Karl Peltzer, research director, HIV/ AIDS, STIs and TB research programme, HSRC.