HIV Futures 10 – a long survey goes a long way (and why it matters)
The 10th HIV Futures report was released by La Trobe University on World AIDS Day 2022, twenty-two years after the release of the very first HIV Futures report in 1998.
Have you ever done the HIV Futures survey? For those who don’t know, HIV Futures is a research study about the lives and wellbeing of people living with HIV in Australia. If you are living with HIV in Australia the HIV Futures study has probably had an impact on your life. It has been used to shape health policy and funding, as well as to work out which support services and programs are needed. It has helped build our shared understanding of what it means to live with HIV in Australia, of the challenges people face, and what is important to people with HIV.
Because the HIV Futures study has been going for so long, it has often been used to understand what has changed for PLHIV over the years.
When we looked at the most recent HIV Futures report, HIV Futures 10, we saw quite a few differences compared to the one before, which came out in 2019.
If you’ve ever done the HIV Futures survey, you know that it takes a fair bit of time and concentration, and you have to be able to read English pretty well. Yet despite this, since 1998, more than 9,500 surveys have been filled out by Australian PLHIV. We don’t know the total number of people who have participated across the ten surveys because some people do the survey once or twice, and others do it every single time.
The HIV Futures 10 report provides a snapshot of those people who were willing and able to do the survey between May 2021 and July 2022, which was a time when many people were in extended COVID-19 lockdowns and many services were disrupted.
HIV Futures asks important questions about people’s lives, as well as about quality of life. In surveys, quality of life questions are used to measure how a person feels about their position in life, in other words, to find out how people are going. We were surprised, then, to see that quite a few more people who did the HIV Futures 10 survey said they had good quality of life (72%) than in HIV Futures 9 (63%). It’s hard to really explain how quality of life could have been so much better for people in the last few years.
The researchers at La Trobe University who run the HIV Futures study noticed this too. They said, in the introduction to the HIV Futures 10 report, that most people did the survey online and there were a lot less paper surveys returned this time around. They suggest this is because paper surveys were not handed out at HIV community events and services usual way. This definitely rings true for us at Living Positive Victoria, as unlike previous years there were hardly any opportunities for us to hand out surveys and encourage and help people to fill them out.
When we looked in detail at the different parts of the HIV Futures 10 report we noticed that there were quite a few differences between HIV Futures 10 and HIV Futures 9 groups. For example, the HIV Futures 10 group had overall higher incomes, experienced less financial stress, had better general health and better mental health, and experienced less isolation and less difficulty accessing HIV care and support.
For a more detailed look at the differences between the two studies, scroll down to the ‘additional reading‘ at the bottom of this post.
We think there were lots of people who might normally have had the headspace and the support to fill out the survey who just weren’t able to do it this time around.
Why does this matter? Because this study has been used for so many years to guide health policy and funding, it’s important to make sure that these latest findings aren’t interpreted to mean that somehow, after a difficult and for many traumatic couple of years living through COVID with HIV, the lives of people with HIV have changed so much for the better.
We know that many in our PLHIV community have been and still are doing it tough. As a community we are strong, and we are strongest when we are connected with each other. For the team here at Living Positive Victoria, it is our role and commitment to continue to find ways to reach out, to offer programs that are relevant and accessible for all PLHIV, and support PLHIV to reduce the negative impact of HIV on their quality of life.
We at Living Positive Victoria are big supporters of the HIV Futures study, and we thank all of the researchers and HIV community leaders who have worked on the HIV Futures study over the last 25 years. Most of all, though, thank you to all of the people who have ever taken the time to fill out a HIV Futures survey. See you for HIV Futures 11.
Additional reading – comparing HIV Futures 9 and 10
Demographics
Overall, participants in HIV Futures 10 had higher incomes and were less financially stressed than HIV Futures 9 participants, and were less likely to be receiving any welfare payments or benefits. Other differences include a greater proportion of participants from regional and rural areas, fewer younger participants, and greater likelihood that participants were living with a partner. While a similar proportion of people were born overseas, more spoke English at home and there were fewer recent migrants.
Health
The HIV Futures 10 survey asked lots of questions about health and wellbeing, and on the whole the people who answered them experienced less ill health than those who completed the HIV Futures 9 survey.
One of the biggest differences was the substantially lower rates of mental illness, with only 49% of HIV Futures 10 respondents reporting having ever been diagnosed with a mental health condition, compared to 64.2% in HIV Futures 9, with only half as many people reporting conditions like anxiety and depression.
Stigma and discrimination
The people who completed HIV Futures 10 were less likely than their HIV Futures 9 counterparts to report HIV-related stigma and discrimination in the previous 12 months (36.6% compared to 56.5%). The cisgender gay men in HIV Futures 10 were more likely to have experienced no discrimination (69.5%) than their HIV Futures 9 counterparts (44.4%). This might be the result of greater awareness of U=U, and changing patterns of disclosure in sexual settings. It seems likely that COVID lockdowns, telehealth and reduced sexual networks need to be factored in when considering these results.
As with HIV Futures 9, bisexual cisgender men in HIV Futures 10 were more likely than gay cisgender men to have experienced any HIV-related stigma and discrimination in the last 12 months in both community and healthcare settings.
Social connection, peer support and services
The majority of people who completed the HIV Futures 10 survey agree that community-based services play an important role in connecting PLHIV with each other, similar to HIV Futures 9.
However the HIV Futures 10 participants were less connected with other people with HIV than HIV Futures 9, with 57.7% having informal connections with others living with HIV, compared with 66.9% of people in HIV Futures 9. Fewer people had engaged with peer support in previous 12 months (25.1% compared to 34.0%), with similar differences in engagement with peer navigation and workshops. This points to impact of COVID-19 on both continuity of peer and support services, as well as those who may have missed opportunities to receive and be supported to fill out the HIV Futures survey in hard copy.
Similarly, while there was no change in the proportion of participants who agreed that knowing other PLHIV was important, and had some interest in being part of a community, fewer people in the HIV Futures 10 sample actually felt part of the community.
Younger people
It’s definitely worth noting that in the HIV Futures 10 sample, people under 35 were the least likely of any age group to report good quality of life as well as the least likely to report good overall wellbeing. Under 35s were the age group most likely to report recent financial distress. This reinforces the ongoing importance of targeting programs and services to younger PLHIV.