On average, the majority of HIV-positive individuals in both the urban and rural settings disclosed their status to at least 1 person. Yet, of those who tested positive, 13% of the respondents in our sample had never disclosed their HIV test results to anyone. Furthermore, more than one third of all HIV-infected adults never disclosed to their sexual partners. We found that patterns of disclosure differed for sexual partners vs. network disclosure. Paralleling previous research mainly conducted in the United States, being older,19,20
having higher socioeconomic assets,21
and longer time since diagnosis21,22
were associated with sexual partner disclosure. In comparison, disclosure to one’s social network was associated with living in an urban rather than rural area, HIV symptomology, and greater perceptions of discrimination in the community.
The most common reason individuals did not share their HIV status, cited about half the time, was out of desire for privacy—a finding consistent with current US literature on nondisclosure.23
Our finding that only 64% of individuals disclosed to their sexual partners was similar to a sample of men and women attending a clinic in Soweto (62%)24
but is lower than rates of disclosure to sexual partners found in Cape Town (78%)12
and Johannesburg (79%).14
This may indicate that studies of clinical populations may overestimate levels of disclosure compared with community-based estimates or that clinical populations disclose more often.
Our results indicate that sexual behavior differs between disclosers and nondisclosers, such that disclosers were more likely to make positive sexual behavior changes after testing positive for HIV. In addition, disclosure had a small but unique and positive effect on individual’s sexual behavior, above and beyond the effects of testing for HIV. Because the heart of promoting HIV disclosure lies in the hope that it will be associated with less sexually risky behavior, these findings suggest that disclosing to others may not only lead to safer outcomes after HIV testing but also safer health behaviors after disclosure. Furthermore, consistent with previous research in Africa, we were encouraged to find that a large majority of HIV-positive individuals asked their sexual partners to test for HIV.25
The majority of HIV-positive individuals reported receiving more social support after disclosure, which is important, given the negative stigma surrounding the disease. Social support has been linked to many positive outcomes such as buffering psychological and emotional distress,26–28
promoting more adaptive HIV coping strategies such as spiritual resilience and community involvement,29
and even positive effects on the immune system, which in turn influence mortality risk and survival.30–32
However, in our sample, 13% of individuals who disclosed to their sexual partners were met with less support. Because decreases in social support may have tangible effects on quality of life and disease trajectory, further research is needed to specify the reasons why these individuals received less support.
Families provided the greatest overall amount of support and community members such as friends or doctors showed the most increases in social support after disclosure, especially compared with sexual partners. This finding is consistent with further analysis we conducted, indicating that family disclosure was related to experiencing HIV symptomology (marginally significant) and age (significant). Given that young people are more likely to be living at home, it was not surprising that being younger was significantly associated with family disclosure. Furthermore, as individuals grow sicker and their disease progressed, they were more likely to disclose to their families and in turn depend on them for social support.33
Considering the centrally supportive role of the family, interventions could focus on strengthening their capacity, for example, by teaching skills for coping with AIDS stigma and training on caregiving.
When identifying the factors associated with HIV disclosure, our findings demonstrate the importance of considering the level of analysis. Results indicated that individual-level factors were influential for sexual partner compared with community-level factors for network disclosure. Regarding disclosure to sexual partners, younger, poorer, and more recently diagnosed individuals were less likely to disclose their HIV status. Unfortunately, the young and poor populations are already likely to be at high risk for transmission and thus are in even greater danger because they are less likely to disclose their HIV status. Thus, HIV interventions would need to consider nondisclosure as a potential additional risk factor for this high-risk population.
Our findings on network disclosure may be beneficial in developing targeted interventions by focusing on community-level variables such as perceived community labeling, gossiping, and stigma that occurs in more rural settings. In smaller, tight-knit rural communities, strong social ties facilitate the flow of social information, such that when individuals disclose their HIV status, an entire community may be privy to the information. In contrast, the large and anonymous nature of the urban environment may stifle this communication flow. This may explain in part why individuals may be more likely to disclose in an urban setting, as there would be less opportunity for stigma and social isolation. Furthermore, given that rural environments often have limited options for medical treatment, individuals may not see any additional benefits from disclosure to a wider network.
The association between higher perceptions of discrimination and lower levels of network disclosure confirms that HIV is more than an infection of the body, but often leads to detrimental social victimization (given the cross-sectional nature of the dataset, the direction of causality between discrimination and network disclosure cannot be known. However, we argue that it is highly unlikely that discrimination leads to network disclosure, rather that network disclosure contributes to higher perceptions of discrimination).34
Ndinda et al31
found that although South African community members knew how to treat HIV-positive individuals, often their actual treatment was quite stigmatizing. Thus, given our finding that HIV disclosure can lead to important benefits such as increased social support and reduced risky behavior, HIV interventions that are encouraging disclosure must recognize the potential stigmatizing cost of disclosure and help prepare HIV-positive individuals to cope with any negative consequences.
Women are both disproportionately infected and bear the burden of caring for HIV-infected persons.35
This reality is reflected in our sample, with over 8 times as many women as men reporting to be HIV positive. Surprisingly, although the majority of HIV-positive individuals in the sample were women, gender was not significantly associated with either sex partner or network disclosure. Because the number of men in the present study was low, it is difficult to draw definitive conclusions on gender differences. Random sampling studies including more HIV-positive South African men would help to clarify the effect of gender.
The current study has several important strengths. In contrast to most research in this area, which has focused on clinical HIV populations, the present study used data collected from randomized probability samples of community members, thus allowing for a greater representativeness and generalizability of findings. In addition, this study included data from both rural and urban areas, allowing for comparisons and insight into ways that interventions may be targeted for each area. Yet, a few limitations of the current research should be addressed. To better grasp the complex factors that influence the decision to test and disclose, additional questions should be included in future studies, such as assessments of behavioral intention, length of partner relationship, time since disclosure, partner reaction to disclosure, type of social support (instrumental, emotional, informational, etc.), and the HIV status of the sexual partner or other network members who were informed. In addition, the baseline dataset used for this study did not involve actual HIV testing; rather retrospective self-reported HIV status was used which may have led to underreporting. Because disclosure is a process rather than an event that occurs at 1 point in time, 1 potential follow-up to the current study would be to investigate disclosure from a longitudinal perspective.