Experiences of HIV – The Seroconversion Study

What do we do?

People in Australia recently diagnosed with HIV are invited to participate in the Seroconversion Study, conducted by the Kirby Institute (University of New South Wales) and the Australian Research Centre in Sex, Health and Society (La Trobe University). Funding is generously provided by the Health Departments of NSW, Victoria, Queensland, WA, NT and the ACT. The study has been running since 1992 and continues to make a real difference to the lives of people affected by HIV, including:

  • Providing information to support health promotion for those affected by HIV;
  • Assisting the prevention of HIV and support for those dealing with a recent HIV diagnosis; and
  • Highlighting current gaps in policy and program development and implementation including opportunities for new research.

To participate, individuals recently diagnosed with HIV complete an online survey about what they believe led to them acquiring HIV and their experiences since diagnosis.   At completion of the survey, participants are invited to volunteer for a face-to-face interview where they can share their story in their own words.  The information provided during these interviews has been particularly valuable and we have received consistently positive feedback from participants.

Anyone over 18 years old living in Australia and having been diagnosed with HIV within the previous two years is eligible.

Summary of the findings

Consistent with HIV diagnoses in Australia overall, most study participants have been gay men.  Some of the study findings so far have included:

  • The average age of men at diagnosis is 35 but the youngest study participant was just 16 years old at diagnosis and the oldest was 74.
  • The most common place where people believe they acquired HIV was at their partners’ or friends’ home with the participants’ own home being the second most common.  Also, few gay men attribute acquiring HIV to sex between regular male partners. HIV is far more likely to be acquired via sex with a casual partner or a ‘fuckbuddy’.
  • At the time of the high-risk event (the time when the participant believed they acquired HIV), more participants were the bottom than the top. This is the reverse of what is ordinarily found among gay men where being the top is more common than being the bottom.
  • Less than half had heard of post-exposure prophylaxis (PEP) and 13% knew about PEP but did not believe the risk was sufficient to require it (on the occasion of the high-risk event).
  • Over three quarters of men reported that they had been tested previously, prior to the test when they were diagnosed as HIV positive.  However only about half of men had been tested in the year prior to their positive test.  There are multiple reasons why men avoid or delay testing in the months or years prior to their diagnosis, including the belief that they had not done anything ‘risky’, and fear of being told they were HIV-positive. Men who were less socially connected to other gay men were more likely to have avoided or delayed testing prior to their diagnosis.
  • After being diagnosed as HIV positive, participants accessed a variety of services, such as: treatment advice, information on viral load, emotional support/counselling and access to networks of other HIV-positive people.  Often, participants’ knowledge was out-of-date, particularly with regard to the side effects of HIV medication.
  • Immediately following their diagnosis with HIV, participants often reported changes to sexual behaviour such as: reducing the number of sex partners, stopping having sex altogether, avoiding sex with HIV-negative partners, disclosing their HIV status more often and reducing their drug use.
  • Participants were most likely to disclose being HIV-positive to regular partners and gay friends. Nonetheless, 17% had not told their boyfriend, 27% had not told any of their gay friends and 54% had not told any of their immediate family.
  • The decision whether or not to commence anti-retroviral therapy (ART) by those newly diagnosed continues to be a challenging one. The anxiety of coming to terms with their recent HIV diagnosis, the stigma still associated with HIV, their relationship with their clinician and the broader community, and concerns and doubts about the ART treatment itself have all been raised by study participants.

What’s next?

The study is continuing with funding from most states and territories until 2015. In the context of the many changes in HIV prevention and treatment, individuals who have recently been diagnosed with HIV have a very important story to tell that can help shape how we better respond to those changes and help to inform public policy and HIV prevention and treatment work into the future. We will collect directly relevant information on testing, PEP/PrEP, beliefs about treatments, and changes in circumstance and relationships after being diagnosed with HIV.

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