Late HIV diagnosis of people from culturally and linguistically diverse backgrounds in Sydney: The role of culture and community

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In Australia more than 85% of newly diagnosed HIV infections in 1999–2003 were homosexually acquired. In contrast, among people from culturally and linguistically diverse backgrounds, there is a much higher proportion of heterosexual exposure and many of the heterosexually acquired infections are diagnosed ‘late’, with people sometimes presenting with symptoms of AIDS. This paper reports on circumstances of late HIV diagnosis, meaning of an HIV-positive diagnosis and perceptions of risk among HIV-positive people from a variety of cultural and ethnic backgrounds in Sydney. The focus was on commonalities across cultures and ethnicities. Data were collected through semi-structured in-depth interviews with clients of the Multicultural HIV/AIDS and Hepatitis C Service and a sexual health clinic. Regular HIV tests were the exception in this group. Testing was usually motivated by a serious health crisis. Participants interpreted their diagnosis in the context of their knowledge and experiences with HIV/AIDS in their country of birth and the perceptions of HIV/AIDS in their ethnic communities in Australia. Many were not aware of the relationship between HIV and AIDS. Risk was perceived in terms of ‘risk group’ membership not in terms of practices and behaviours. Late diagnosis cannot be explained solely by association with country of birth, race or ethnicity. Rather, it is located within complex sets of social and cultural relations: the values attributed to HIV/AIDS and those infected and the social and cultural relations of ethnic communities in Australia and the dominant culture. These are enacted in healthcare seeking behaviour, perceptions of people with HIV and perceptions of being ‘at risk’.