"How Can I Tell?" Consequences of HIV Status Disclosure Among Couples in Eastern African Communities in the Context of an Ongoing HIV "Test-and-Treat" Trial

“People living with HIV/AIDS anticipate HIV-related stigma and fear disclosure to intimate partners. Yet, disclosure is critical to reducing HIV transmission and improving care engagement."

This journal article published in AIDS Care, discusses the findings of a qualitative study which aimed to explore normative beliefs surrounding disclosure and disclosure experiences in communities participating in an ongoing HIV test-and-treat trial, implemented by Sustainable East Africa Research in Community Health (SEARCH) in Kenya and Uganda.  This involves the rapid scale-up of HIV testing and antiretroviral treatment (ART) rollout, which makes a critical mass of individuals newly aware of their diagnosis of HIV, and newly presented with the dilemmas of disclosure.  As stated in the article, “Although substantial evidence documents disclosure consequences, limited information exists on experiences and social norms surrounding disclosure within the contexts of universal HIV "test-and-treat" interventions, which aim to saturate communities with HIV testing and link positive individuals to HIV care programs. Little is known about the effects of rapid community introduction of test-and-treat on the social dynamics of disclosure processes, including positive and negative consequences for PLWHA of disclosing, and of concealing, their status.”

The study conducted in-depth interviews with care providers, leaders, and members of eight communities, looking specifically at the experiences with and attitudes towards disclosure of HIV status to intimate partners with HIV-positive study participants; and exploring perceived social norms, beliefs, and practices related to HIV testing, disclosure, and care-seeking among all participants. Data were analyzed using grounded theoretical approaches and Atlas.ti software.

The article discusses the findings related to barriers to and facilitators of disclosure, as well as disclosure experiences (including positive and negative consequences of both disclosure and concealment) among study participants. These findings are supported by quotes from study participants.  The following are some of the key findings:

HIV-positive individuals who had not yet disclosed their status to their partners reported a variety of strategies undertaken to avoid disclosure, such as care-seeking in remote facilities, hiding HIV medications, and abandoning care. Participants also discussed consequences of actively concealing one’s HIV status from a partner which included avoiding care, or not adhering to ART regimens, in efforts to avoid suspicion and inadvertent disclosure.

Findings confirmed gender differences in barriers to disclosure: while both men and women feared blame and accusation, women also feared violence and abandonment (“I did not tell my husband because [what if] I tell him and he abandons me at the last moment when I am in labor?”). Positive consequences included partner support for increased care-seeking and adherence (“My husband keeps on reminding me ‘have you taken those drugs?’”) Yet negative consequences included partnership dissolution, blame, and reports of violence (“some men beat their wives just because of that [bringing HIV medications home]”).

Among HIV-infected individuals in discordant relationships, men more often reported supportive spouses (“we normally share [HIV-risk-reduction strategies] since I have been infected and she is HIV negative”), than did women (“my husband refused to use condoms and even threatened to marry another wife”).

Findings also reveal the important role of health care providers (counselors, peer educators, and nurses) as facilitators of disclosure as care providers often lent support for HIV-positive women who wanted to engage partners in testing but feared negative consequences. The study therefore recommends that efforts to strengthen capacity in health systems for gender-sensitive clinician- or counselor-assisted disclosure should be accelerated within test-and-treat efforts.  In particular, efforts are needed to both meet women’s needs for the security and support of care providers with disclosure, and explore men’s preferences for testing and disclosure support, which could include home-based couples testing and assisted disclosure in non-facility settings.