By virtue of circumstance: HIV/AIDS in mobile and rural populations in Western Australia, an ethnographic study

Susan Herrmann

HIV/AIDS is an incurable, infectious condition that, without access and adherence to lifelong treatment with specific antiretroviral drugs (ARVs), leads to declining immune-competence and death, usually within ten years of acquiring the infection. Australians have benefited from universal access to ARVs under patent through the national health care access scheme, Medicare. Since 2005 there has been a steady rise in notifications, dispersed across Western Australia (WA), indicating HIV infection in women, and men who have sex with women, against the previous trend of risk and transmission in men who have unprotected sex with other men. Many people diagnosed hold temporary visas and come to WA with their families to work or study and are ineligible for Medicare. This compromises their access to effective antiretroviral treatment by virtue of their visa status. Between 2007 and 2008, one hundred and seventeen people living with HIV in WA participated in an international, mixed methods study of health-related quality of life. This thesis describes and references those findings to examine, through an ethnographic perspective, and within the context of current epidemiology: (1) the experience of managing HIV in a rural or remote environment; (2) the effect of visa status in mediating the experience of HIV; and (3) aspects of access and adherence to ARVs that influence the outcome of treatment. In 2010 and 2011 data were gathered from interviews with thirty participants (nine women) with HIV-infection: twenty-two had been granted temporary work or student visas, fourteen were current business or student visa holders, and nineteen lived or worked in rural areas. Group data from two rural-based cohorts is referenced and twenty-one key informants were interviewed to augment context, and contribute thick description. Limited access to ARVs posed by non-citizen status and/or distance from dispensing pharmacies was overcome largely by motivation to accept treatment and support from key health professionals (HPs), which resulted in high levels of adherence and engagement with care. However, there were differences in approaches to HIV supportive care between indigenous and non-indigenous cohorts with more intense involvement of HPs in the former group. The data showed a pattern of stigma characterised by persistent fear of disclosing HIV serostatus and infecting others. This was nuanced by the particular circumstances of individuals, for example, non-citizen status, and living and/or working in regional areas. In particular HIV-positive serostatus affected, and frequently limited, social relationships, employment and the likelihood of successful migration. These data indicate, firstly, that the immunopathological consequences of HIV infection can and should be avoided by policies that facilitate unfettered access to treatment and medical care; and secondly that the psychosocial aspects of HIV disease that limit the lives and livelihoods of people with HIV infection require intervention.

By virtue of circumstance: HIV/AIDS in mobile and rural populations in Western Australia, an ethnographic study

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