By L. Wojciechowski

Over the last 40 years of the HIV epidemic, the scientific, political and community response to HIV has changed significantly and, with it, the lived experience of people with HIV in Australia. Young people diagnosed with HIV today have no living memory of the ‘AIDS Crisis’ years and receive their diagnosis in a very different context than those diagnosed in previous generations.

Biomedical breakthroughs have revolutionised HIV treatment, rendering HIV a manageable chronic condition, and concepts like U=U (undetectable = untransmittable) meaning that people with HIV sustaining an undetectable viral load are not able to pass on HIV through sex, and Pre-Exposure Prophylaxis, are providing hope. However, despite these biomedical achievements, stigmas surrounding HIV persist.

Within Australia’s existing healthcare system, young people aged 18-29 are grouped together with the broader adult population. However, recent evidence suggests that this age group has unique characteristics and needs that should be considered separately.

The changing nature of what it means to be young—and HIV positive—in Australia today raises questions about whether the HIV service infrastructure is catering for the needs of all people living with HIV.

To shed light on these issues and identify opportunities for improvement, the Young + Positive study was conducted. The study explored how young people understand HIV, their connection, capacity and willingness to access care and support, and aimed to identify opportunities for improving engagement around their HIV support needs.

The findings from this study demonstrated that people aged 18 to 29 are a diverse and distinct cohort, one that, for many, is yet to find a place of belonging in the contemporary Australian HIV epidemic. By extension, they have support needs specific to them as young people that influence how they seek and engage with services and supports. While some were able to meet their needs in existing support structures, many described their needs as not being fully met by the current HIV service system in Australia. This was due to a complex intersection of inner- and outer-world factors including: psychological outlook; perceptions of HIV and HIV services; workforce competencies; physical space of services and hours of operation.

Importantly, the study showed that individuals whose identities didn’t align with the dominant epidemiological picture of HIV in Australia, such as women, heterosexually identifying people, those in non-urban areas, culturally and linguistically diverse individuals, and those born with HIV, required additional considerations to feel fully engaged with support.

These findings have implications for the Australian HIV sector. They reveal the need for a more tailored approach to meet the unique support needs of young people living with HIV. The study also highlights numerous opportunities to integrate young people more effectively into existing HIV service systems and provide them with the support they need.

It is hoped that the findings from this research contribute to supporting young people with HIV in Australia to find a sense of belonging within their communities and live their lives to their full potential, free from discrimination and in good health.

For more information about the Young + Positive study, including results when they are published, go to www.youngandpositive.com.

Published: June 2023