Understanding Barriers to Information Access and Disclosure for HIV+ Women

ICTD researchers have employed several technology interventions to help combat the HIV/AIDS epidemic in developing regions. These interventions address medication compliance, decision-making support for health care workers, and awareness campaigns. A majority of these interventions focus on dissemination of information on HIV prevention, testing and treatment. Our research surfaces the situated knowledge of HIV positive women to examine how heterosexual married couples in Chennai (India) manage knowledge of an HIV-positive status, illustrating why dissemination models often fail to lead to safer health practices. Timely disclosure to sexual partners is critical for preventing transmission and ensuring effective treatment. However, voluntary disclosure between married couples can take up to eight years. Patients often valued maintenance of social connections over longer life spans and health. We describe these sites of dissonance and articulate the conflicting needs and conditions that determine concealment of HIV status. We discuss how socio-cultural factors such as gender structures in intimate relationships determine access, understanding and use of information critical to prevention of the HIV/AIDS epidemic. We ask how the ICTD prioritization of efficiency, standardization and measurement neglect the affective and relational experiences that determine the spread of the largest global health crisis. Finally, we provide a set of design considerations and provocations for ICTD researchers to begin addressing the underlying socio-cultural factors that could ensure greater use of beneficial health information by individuals at risk