Negotiating and Managing Disclosure: Privacy Protection and Self-disclosure Patterns of HIV Positive Status among Urban HIV-infected African American Men

Background: African Americans continue to bear a disproportionate burden of HIV/AIDS. Black men represent almost one-third of all new HIV infections in the U.S. Understanding their experiences with disclosure of HIV status will inform both prevention and treatment interventions in the African American community. Purpose: The purpose of this qualitative study was to explore the issue of disclosure with HIV positive African American men residing in a large Midwestern city. Methods: Fifty African American men (n = 50) participated in in-depth interviews about their experiences living with HIV. Participants ranged in age from 24 - 57 years; mean age = 43.98, SD = 7.59. Time since HIV diagnosis ranged from 3 months to 26 years; mean time = 12.5 years, SD = 7.2. Data were analyzed thematically. Results: Disclosure of HIV status posed a major dialectical struggle between the need to “unburden” the HIV, and the need to protect essential economic and social resources. Balancing such opposing needs cost men energy, peace, authenticity, happiness, and access to health care. For those who were able to disclose widely, the emancipation they experienced fueled public activism to decrease HIV stigma.

Conclusions: In this era of test and treat, disclosure of HIV status is even more important for individual health and for broader societal prevention through early treatment efforts. Yet, disclosure remains problematic for HIV-infected African American men. It is imperative that community, family, and work environments be made safer so that HIV positive status holds no power over dignity, confidence and belonging.