Young people want research to focus on a cure for HIV, sharing their status and U=U

Young people living with HIV in South Africa recently identified their priority research questions as part of an approach which moves away from biomedical research being led by researchers to communities taking the lead. Their priorities were published in PLOS Global Public Health.

Priority setting workshops allow communities to collectively identify and rank research priorities. While previous international workshops have highlighted global trends, understanding local needs, especially in regions where the burden of HIV is particularly high, is vital. The research team, led by Arish Mudra Rakshasha-Loots, facilitated a workshop at The Family Centre for Research with Ubuntu, in Cape Town, to give opportunity to young people living with HIV and their caregivers to identify future research priorities. The project aimed to enhance trust, transparency, and community leadership in research endeavours.

Nineteen young people aged 14-18 years old with perinatally-acquired HIV, plus one parent or caregiver per young person, participated in a workshop in Cape Town, South Africa. Attendees discussed research questions around HIV-related physical health, mental health, and psychosocial support. Separate workshops for youth and adults were facilitated in English and isiXhosa in order to collectively identify potential research questions.

Young people indicated the following priorities for HIV research:

1. Can HIV be cured?
2. How can we communicate and disclose our HIV status to friends, family, and partners?
3. Is it safe to have unprotected sex when you are undetectable and your partner is HIV negative?
4. Do antiretrovirals (ARVs) cause depression?
5. Do friends and family see us differently because of our HIV status?

Many parents attending the workshop were themselves living with HIV, leading them to raise research questions relevant to their own experiences. Their top five priorities were:

1. Can ARV injections help improve adherence?
2. How can local clinics better support children who are referred from research clinics?
3. How can we empower girls living with HIV to make responsible sexual decisions?
4. How can we improve relationships between mothers and sons?
5. How do we encourage family members to accept someone’s status?

A graphic in the research article highlights the other priorities identified. Young people also wanted to know how ARVs affect their bodies in positive or negative ways, the consequences of ARV interruption, and why ARVs must be taken daily.

Both groups highlighted the importance of disclosure and stigma reduction. Specifically, young people prioritised research on stigma reduction in school settings, recognising the significant role educational environments play in shaping social relationships and attitudes towards HIV.

Parents and caregivers, on the other hand, also expressed concerns about the mental health impacts of HIV status disclosure without consent, underscoring the need for research in this area to better support quality of life. These findings reflect the local context and national priorities in South Africa, where people living with HIV face stigma and barriers to education.

The focus on understanding transmission risk and disclosure support underscores the importance of effective science communication in ensuring research findings reach and benefit these communities. For example, there is clear evidence that if you have an undetectable viral load, you cannot transmit the virus, yet this was still a key priority for young people.

The workshop also identified the need for local community clinics to offer better support, particularly for young people transitioning from specialist research clinics. The quality of care received in specialist clinics should be available in the broader healthcare system.

Researchers feel that the model may be helpful for others wanting to understand the perspectives of people living with HIV, particularly in resource-limited settings. It provides an interactive, meaningful path to communities informing future research.