Why are young people with HIV not being told about the benefits of viral suppression?

Understanding the many benefits of viral suppression can be a big motivator for taking HIV treatment properly. But research in Zimbabwe suggests young people do not always get their viral test results and lack the knowledge they need to fully understand what their result means. 

What is the research about? 

The research looked at young people’s knowledge on viral loads (sometimes called ‘viral literacy’). Researchers interviewed 45 adolescents and young people (ages 10-24) with HIV in three urban, suburban and rural districts in Zimbabwe. They also spoke to healthcare workers and caregivers. 

Why is this research important? 

Young people with HIV have the worst health outcomes of all age groups. Poor adherence to antiretroviral treatment (ART) is one of the main reasons why.  

Viral load testing is important for finding young people on ART who need extra adherence support. But a recent World Health Organization consultation found that many young people with HIV do not understand what their viral load result means and the many ways that having a low or undetectable viral load can benefit them. 

What did they find out? 

The main reason young people gave for having their blood taken was to allow healthcare workers to know if they were taking their treatment properly.  

Across all age and gender groups there was limited understanding of what having an undetectable viral load means and how viral suppression prevents onward transmission. Most young people did not understand that viral suppression might not only improve their health but their lives and relationships, and even their mental health.  

Some younger participants had not heard of a viral load and did not know why they were having regular blood tests. Even young people who knew the terms ‘suppressed’ or ‘undetectable’ thought viral load testing was only done to check their adherence behaviour. 

Often, younger adolescents and young people with a low or undetectable viral load were not told their result. Some found a way to look at their result even if they were not given it, but did not understand what the number meant. When asked about this, healthcare workers said they had too many patients to see. So they had to prioritise young people with concerning viral load results. 

Many young people felt their relationships with healthcare workers depended on getting a low test result. As Edward, 11, said: “I get along with the nurses because I follow their instructions and I take my medicine on time.” Some felt that healthcare workers saw a high viral load as evidence of “troublesome” behaviour. This made them dislike viral load monitoring. 

What does this mean for HIV services? 

It is very important to build young people’s viral literacy. This is crucial for motivating young people to keep taking ART. This knowledge will not only improve their health, but their well-being, self-esteem and hope for the future. 

The focus of viral load monitoring needs to broaden out beyond those on ‘failing’ treatment. A young person should always be told their viral load result, whatever it is. This should be part of a non-judgemental conversation about where they are at with their treatment and why. And what their result means for their life. If they are virally suppressed this should be celebrated and the many benefits explained to motivate them to maintain this. 

Young people in this study said relationships with family and friends, future or current intimate relationships, avoiding stigma, looking healthy and having an ordinary life were things that motivated them to take ART. Connecting viral suppression to these things (or anything else that matters to a young person, such as a sporting goal) could transform young people’s relationship with their health and treatment.