Abstract

There are more women than ever living with HIV/AIDS in Australia and this relatively small heterogenous population has received scant research attention. Women living with HIV/AIDS, face many complex and compelling challenges in managing this stigmatised illness in their everyday lives. This study sought to gain an understanding of these women's support needs. Semi-structured, in-depth interviews were conducted with two groups: women living with HIV/AIDS (Sydney and Melbourne, involved and not in advocacy); and HIV specialists (Sydney and Melbourne) treating women living with HIV/AIDS. There was a consensus view among both specialists and women that women: have limited knowledge of HIV/AIDS; have no collective or historical understanding of HIV/AIDS; are more likely to present late with HIV; experience diagnosis as extremely distressing; are not aware of the resources available including medical treatments; and are more likely to experience social isolation. Both groups recognised the need for psychological and social support. HIV specialists questioned the effectiveness of community based peer support, while women identified this as one of the most important forms of support. HIV specialists differed in their knowledge and views of CBOs, and this influenced their decisions on recommending these to their female patients. The unique nature of this stigmatised illness calls for the recognition of the contributions of all parties in efforts to address these support needs; the women living with HIV/AIDS, HIV specialists and community based organisations. Particularly in light of the potential for social isolation, inquiries into social structures that provide the opportunity to access social resources are arguably a future direction to advance knowledge in this area.