Local contexts of HIV in Japan: Explaining the epidemiology with ethnography

Background: According to recent surveillance reports, Japan’s national HIV epidemic is showing signs of stabilization. If this trend continues, it would mark an important, positive shift. However, significant HIV disparities remain in specific populations and geographic areas. The aims of this study were to determine how accurately official epidemiologic data represented local HIV epidemics in two metropolitan areas (Kansai and Tokyo) as understood and experienced on the ground, and to identify contextual factors that explain why the epidemics unfolded as they did. Methods: Data collection (January-August 2013) included participant observation at community and institutional sites identified through ethnographic mapping (459 pages of field notes), qualitative interviews with stakeholders in local HIV epidemics (n=32; mean age=40.9; 40.6% cisgender female; 53.1% sexual minority); and document/artifact research (n=74). Analyses comprised three stages of coding using grounded theory across the triangulated data. Results: Participants expressed that the local epidemics were worse than official reports indicated. Factors driving the epidemics included waning government and public attention to HIV; barriers to testing; overreliance on health education and behavior change models; and persistently stigmatizing social environments for MSM, transgender persons, and people living with HIV. Factors constraining the epidemics included well-developed sectors of volunteer HIV interventionists; strong coalitions between HIV nongovernmental organizations and government; and Japan’s advanced social medicine system. Conclusions: Our ethnographic findings suggest that surveillance reports are limited in capturing local dynamics in Japan’s two largest HIV epidemics. We discuss how we used contextual factors to identify lessons for Japan, the U.S., and other nations.