Early HIV disclosure and nondisclosure among men and women on antiretroviral treatment in Uganda

Abstract

Efforts to expand access to HIV care and treatment often stress the importance of disclosure of HIV status to aid adherence, social support, and continued resource mobilization. We argue that an examination of disclosure processes early in the process of seeking testing and treatment can illuminate individual decisions and motivations, offering insight into potentially improving engagement in care and adherence. We report on baseline data of early HIV disclosure and nondisclosure, including reasons for and responses to disclosure from a cohort of men and women (n=949) currently accessing antiretroviral treatment in two regions of Uganda. We found early disclosures at the time of suspicion or testing positive for HIV by men and women to be largely for the purposes of emotional support and friendship. Responses to these selected disclosures were overwhelmingly positive and supportive, including assistance in accessing treatment. Nonetheless, some negative responses of worry, fear, or social ostracism did occur. Individuals deliberately chose to not disclose their status to partners, relatives, and others in their network, for reasons of privacy or not wanting to cause worry from the other person. These data demonstrate the strategic choices that individuals make early in the course of suspicion, testing, and treatment for HIV to mobilize resources and gain emotional or material support, and similarly their decisions and ability to maintain privacy regarding their status.

Keywords:

• HIV treatment
• disclosure
• Uganda

Acknowledgements

This study was funded by the U.S. National Institutes of Health (R24HD056917, McGrath PI). The authors wish to thank the staff of the Joint Clinical Research Centre (JCRC) in Kampala and the ISS Clinic in Mbarara Hospital for permission to interview patients attending their clinic. The authors also thank Jenny Zabel and Doreen Mpirirwe-Kamoga who assisted in data analysis and cleaning in Cleveland. Finally, the authors thank most especially the men and women who agreed to participate in this study.