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Missing Voices published in international journal
01/10/2024
Missing voices: building women living with HIV’s meaningful engagement in HIV clinical and cure research has been published in Culture, Health and Sexuality: An International Journal for Research, Intervention and Care.
Missing Voices was a research project from 2021 and was lead by Positive Women Victoria and ARCSHS (Australian Research Centre in Sex, Health and Society) at La Trobe University, Melbourne.
Women make up 53% of people living with HIV globally, but are under-represented in HIV clinical trials, including cure trials. And little is known about how women living with HIV in Australia perceive HIV cure research and what are the factors hindering their participation in HIV cure trials.
Missing Voices was based on interviews with nine women with HIV to learn about their motivations and what they felt were the barriers to being part of HIV clinical research. A key finding was that the women interviewed expressed optimism that a cure would dispel HIV-related stigma and improve their lives. Reluctance to participate related to concerns regarding potential side-effects, antiretroviral treatment interruption, and impacts on fertility. Not knowing about trials, confidentiality, frequency of testing and getting to and from clinics during the trial was also a barrier, especially for those women who were carers. Lastly, onerous eligibility criteria, clinicians’ assumptions about women’s willingness and ability to meaningfully provide consent to participation were also cited as barriers.
In order to overcome these barriers, the researchers cited that factors relating to reproductive health, ARV interruption, and recruitment needed to be considered.
Being cured would give me back my self-esteem, it will bring back the respect. I’ll respect myself and I’ll feel respected by the person who knows that I’ve got [HIV] Nomathalente (name changed)