"I am not a guinea pig": quality of life and methodological issues in the research with Latin American men living with HIV/AIDS in Japan

Abstract

In this study, the methodological difficulties that we encountered in our ethnographic investigation with a group of male HIV-positive Latin Americans living in Japan are discussed. From April to September 2002, 2003 and August 2004, 20 People Living with HIV/AIDS (PLWHA) were interviewed. A set of six 60-min interviews was conducted with 28_37-yearold HIV-positive males. Three of them were illegal aliens and seven of them claimed to be homosexual. Participants were contacted through a hospital, a Non-Government Organization (NGO), and by snowball sampling. Our analysis of the interviews indicated that informants poor health education background and scepticism about positive outcomes of research in their lives closely related to our informants unwillingness to participate in research projects. Interviews brought about cathartic effects for the informants. Issues related to citizenship and legality resulted in unfavourable perceptions of health related research, structural barriers in the provision of medical care, and detrimental effects in the QoL of these men. Our informants' QoL closely related to a regime of "normality" and "unhealthy life" prior to sero-conversion. Finally, QoL for PLWHA needs to be understood in relation to the global consumer culture. Key words: People living with HIV/AIDS, quality of life, migration, Latin Americans, Japan, Nikkeijin