Wong LH, Van Rooyen H, Modiba P, et al. Test and tell: correlates and consequences of testing and disclosure of HIV status in South Africa (HTPN 043 Project Accept). JAIDS 2009;50(2):215-22.
South African is disproportionately affected by HIV, with 5.3 million infected persons and an estimated 20% of the young adult population infected.(1,2) The effect of disclosure to sex partners and family, friends, and health care providers in sub-Saharan Africa has not been explored. Disclosure may be a way to increase HIV testing in at-risk persons and reduce sexual risk and HIV transmission.
To measure the rate of disclosure of HIV status, factors associated with disclosure, and effect of disclosure on risk behavior and social support
An urban township near Johannesburg (Soweto) and rural (Vulindlela, KwaZulu-Natal) South Africa
Cross-sectional survey using baseline data from a multi-country randomized trial comparing HIV counseling and testing strategies. Data from two study sites from South Africa were used in this analysis.
Twenty-three HIV-positive men and 192 HIV-positive women residents of Soweto and Vulindlela
Rates and correlates of HIV disclosure to sex partners and social network (e.g. relatives, employer, health care providers) and the reasons for nondisclosure
A multi-stage sampling scheme was used that included complete household enumeration from 16 communities in Soweto and Vulindlela. Within randomly selected households, all persons residing there were enumerated and one household member between 18 and 32 years of age was randomly selected and asked to participate in a face-to-face interview conducted in the local language by trained community interviewers.
Information collected included demographics, HIV stigma, whether HIV symptoms was the reason for HIV testing, reasons for nondisclosure, behavior change following diagnosis, and perceived social support following disclosure.
The chi square and t-tests were used to measure associations between predictor variables and the outcomes. Independent associations were measured using logistic and Poisson regression models. Behavior change was measured first by comparing differences between individuals who disclosed to sex partners and those who did not disclose. In addition, behavior change was measured within individuals who disclosed comparing behaviors prior to and after testing and prior to and after disclosure.
Response rates were similar for both sites (84.7% in Vulindlela and 84.5% in Soweto). Forty-six percent of participants were from Vulindlela. The majority was female and the mean age was 27 years. Most (77%) had a sex partner and 22% of these were cohabitating. Most participants were unemployed. The average time since HIV diagnosis was 13 months (SD=12.7).
HIV disclosure was reported by 87% of participants and among those who disclosed, 93% disclosed to boyfriends or girlfriends, 77% to a family member, 59% to spouses, and 58% to health care professionals. Out of a total of 10 types of relationships one could disclose to, the disclosers did so to an average of 2.8 of these and to an average of 42% of the relationship categories in their available network. Disclosure was independently associated with older age (odds ratio [OR] 1.10, 95% confidence interval [CI]: 1.02-1.18), socioeconomic assets (OR 1.73, 95% CI: 1.03-2.90 with disclosure rates highest for persons in the midrange of assets), and the time since diagnosis (shorter time as reference; OR 1.04, 95% CI: 1.01-1.07). Persons living in the rural area disclosed to fewer persons within their networks (M=2.46, SD 1.55) compared to those in the urban area (M=3.17, SD 2.03). Disclosure to a greater number network categories was associated with perceived community discrimination (β=0.11, SE 0.05, 95% CI: 0.00-0.22) and HIV testing due to HIV symptoms (β=0.21, SE 0.09, 95% CI: 0.02-0.39). Reasons for nondisclosure were obtained from 20 participants. Commonly cited reasons for nondisclosure included need for privacy, fear of rejection, and fear of physical abuse.
Following disclosure, 82% requested that their partner be tested and 81% reported that they wanted to limit sex to one partner; 64% stated using condoms for all sexual encounters. Compared to non-disclosers, a statistically significantly greater proportion of disclosers reported always using condoms, using condoms more frequently, reducing their number of partners, and remaining or becoming monogamous. Those who did not disclose were more likely to abstain from sex. Post-test and post-disclosure changes were similar. In both rural and urban sites, immediate family members provided the greatest degree of social support, followed by doctors, and to a lesser extent, boyfriends, girlfriends, and other friends.
A relatively high proportion of HIV-infected persons disclose their HIV status to partners and others in their social network. Disclosure was associated with increases in safer sexual behaviors and greater social support.
The main strength of this study is that it used a probability sampling scheme. The low proportion of men in the study, however, limits its generalizability. The distribution of the characteristics of those who disclosed and those who did not was not presented, thereby limiting the ability to compare the two groups. The reasons for nondisclosure were not obtained from a sample large enough to provide meaningful results. All information was collected from face-to-face interviews with no external validation. Social desirability may have affected responses. Overall the study was of fair quality.
Although disclosure to at least one person was reported by most of the participants, 13% did not disclose to anyone. Disclosure was associated with safer sexual behavior and social support. Because information on the reasons for nondisclosure was obtained from so few participants, additional studies to further understand the barriers to disclosure should be pursued. Social support has been linked to reducing psychological and emotional distress(3,4) and enhancing HIV coping strategies.(5) With the association between disclosure and social support, community interventions could focus on strengthening the capacity of families to cope with HIV.
- United Nations Programme on HIV/AIDS. AIDS Epidemic Update. Geneva, Switzerland: United Nations Programme on HIV/AIDS; 2007. No abstract available.
- United Nations Programme on HIV/AIDS. Report on the Global AIDS Epidemic. Geneva, Switzerland: United Nations Programme on HIV/AIDS; 2006. No abstract available.
- Donenberg GR, Pao M. Youths and HIV/AIDS: psychiatry's role in a changing epidemic. J Am Acad Child Adolesc Psych 2005;44:728-47.
- Kalichman SC, DiMarco M, Austin J, et al. Stress, social support, and HIV-status disclosure to family and friends among HIV-positive men and women. J Behav Med 2003;26:315-32.
- Simoni JM, Demas P, Mason HRC, et al. HIV disclosure among women of African descent: associations with coping, social support, and psychological adaptation. AIDS Behav 2000;4:147-58. No abstract available.