This study aimed to determine whether people living with HIV (PLHIV) are concerned about HIV associated neurocognitive disorder (HAND) and would find information and resources for HAND beneficial. An online survey focusing on the experience of HAND was distributed via the website of Positive Life New South Wales: a peak peer-support non-government organization in Australia. Of 126 respondents, 94 (74%) had heard of HAND, 52/94 (55%) had experienced concerns and of these, 48/52 (92%) felt anxiety about discussing the subject. Of those who had experienced concerns, 30/52 (58%) had spoken to someone about these concerns and 23/30 (77%) had received a positive response. Across the entire sample, 74 (59%) had noticed symptoms of cognitive decline in themselves and/or others. Respondents who noted a decrease in their ability to organize were on average five years older than those who had not noticed a decline (p = 0.012, effect size -.54). Forty-nine (39%) indicated that they would like guidance to initiate discussion about HAND with their doctor, caregiver or other PLHIV. The survey findings suggest that increasing awareness of HAND among PLHIV and their caregivers, and providing resources to facilitate discussion about HAND may assist to reduce concerns among PLHIV and enhance the effectiveness of clinical review.
Keywords: HIV associated neurocognitive disorder; People living with HIV; caregivers; stigma.