YES! Youth-led HIV care pilot in Zambia shows promise

HIV clinic staff who worked with youth peer mentors to improve HIV treatment for adolescents and young people with HIV say the project gave them a better understanding of the issues young people with HIV face.

Project YES! (Youth Engaging for Success!) recruited eight young people with HIV (ages 21-26) in Ndola, Zambia to be youth peer mentors at one of four local HIV clinics. The mentors were trained to support adolescents and young people with HIV (ages 15–24) who were patients at the clinics to improve their HIV treatment.

Other studies have interviewed the young people who were supported by YES! and showed positive results. But this study interviewed ten healthcare providers involved in YES! to understand what they thought of the project, with a view to expanding the scheme to other places. 

Healthcare providers said the peer mentors were able to better connect with adolescents and young patients through the shared experience of living with HIV.

They saw value in the unique role the peer mentors played in young people’s HIV care and expressed confidence in their leadership of one-on-one and group meetings.

Through YES! young patients who had experienced severe violence or suicidal thoughts were referred to healthcare providers involved in the project.

Healthcare providers described this as a key strength of YES!. They said this process gave them the opportunity to discuss issues that do not tend to be addressed in HIV clinics, such as sexual violence. Healthcare providers said this shifted their views of adolescents and young people with HIV and gave them a better understanding of the varied issues they face and how this can affect people’s ability to adhere to HIV treatment.

But healthcare providers said they had limited time to address these issues at the clinic, and did not know where to refer young people for more support. They asked for more resources to address these additional needs.

YES! also ran support groups for caregivers and young people. Healthcare providers reported how caregivers used these groups to ask questions about HIV myths and misconceptions, herbal medicines, and sexual and reproductive health.

They said caregivers clearly valued discussing how they had told the young person in their care that they had HIV. Caregivers often felt guilty about these experiences. If this conversation had not gone well, caregivers said it would make it hard for them to talk to young people about HIV, including treatment. The group meetings gave caregivers the space to work through some of these issues.

Most of the healthcare providers discussed young people moving from child to adult HIV clinics. An unwelcoming atmosphere often led adolescents to stop going to the adult clinic or return to the child clinic.

Healthcare providers said YES! improved things by offering planned support for willing young people to make the move. Offering young people a tour of the adult clinic, having youth peer mentors at the adult clinic, and having a healthcare worker from the children’s clinic go to the young person’s first adult appointment all helped the move go better.

Healthcare providers described many occasions when young people said they were willing to move to an adult HIV clinic but their caregivers would not allow it. This shows that caregivers also need support when their child moves to adult HIV care.

A key challenge was healthcare providers not having enough time for YES! activities due to other work responsibilities. It was also difficult to find confidential spaces to meet with the adolescents and young people.

Despite this, the study shows the value of youth-led, person-centred schemes such as YES!. Healthcare providers’ praise for the programme shows the model is both acceptable and feasible and should be scaled up.