Interviewer: “Alright, so how does having a suppressed viral load help you?”Participant: “It helps because I would have followed all the instructions properly.” – 21-year-old female.
Interviewer: “Alright, so how does having a suppressed viral load help you?”
Participant: “It helps because I would have followed all the instructions properly.” – 21-year-old female.
Almost all adolescents and young people having viral load monitoring in Zimbabwe do not understand why it is done, a recently published study in the Journal of the International AIDS Society has found. Most believe it’s a procedure that enables clinicians to rectify poor adherence behaviour and they do not link it to improved health or quality of life, showing gaps in how routine viral load monitoring is communicated to and understood by young people.
“For those [adolescents] who returned a low or undetectable viral load, results were noted in their medical file and tended not to be discussed with them,” writes the authors. “Some older participants reported taking the initiative to check their results independently. However, without having had prior opportunities to develop their understanding of what the results could mean and in the absence of any guided interpretation, it remained just a number which held little interpretive value.”
The authors recommend changing the way routine monitoring and test results are communicated to young people with HIV and suggest emphasising the psychosocial benefits of achieving viral suppression. These include confirming that HIV treatment is working, optimising health and well-being, and knowing that ‘Undetectable equals Untransmittable’ (U=U). By doing so, adolescents may be more likely to stay committed to optimal treatment and develop self-management skills, which will help them transition into adulthood.
Adolescents and young people have the worst health outcomes among all age groups with HIV, due to low rates of viral suppression. Therefore, routine viral load testing is crucial to improving treatment and achieving the 95-95-95 global targets. To understand how young people perceive viral load monitoring and results and how it affects their treatment engagement, Zivai Mupambireyi Nenguke from the Centre for Sexual Health and HIV/AIDS Research, Dr Sarah Bernays of the University of Sydney and colleagues conducted interviews with 45 young people aged 10–24 years in three healthcare facilities from high HIV burden districts in Zimbabwe in 2021. They also conducted six workshops with 20 caregivers and 18 health workers.
Although most adolescents knew that health workers used viral load testing to monitor and identify problematic adherence behaviour, they did not understand how viral suppression could positively impact their social and relational lives. Only older adolescents (aged 16-24) demonstrated a greater understanding of how viral load results provide information about their body’s immunological response to the virus and their treatment.
“On viral load they will be checking if you are taking your medication correctly and if you are not defaulting. They will be checking to see how many soldiers [CD4 cells] are in your body and if they can suppress your viral load.” – 23-year-old female.
Although health workers reported providing age-appropriate explanations about immunology when introducing viral load testing, several participants reported that they could not remember being told why their blood was being tested and did not know what viral load testing meant. Even among those familiar with the terms “suppressed” or “undetectable,” viral load testing was considered a way to assess adherence behaviour. In all age groups, there was limited understanding of what an undetectable viral load means and how viral suppression prevents onward transmission.
Even though health workers had the opportunity during the process of viral load testing to explain the procedure, reinforce knowledge and discuss the benefits of achieving a low or undetectable viral load, they mentioned hindrances that limited them from engaging in detailed conversations.
“We see a lot of children in a day and it’s very difficult to remember when the viral load was taken and if the results were disseminated or not, especially for those with a suppressed viral load. Remember we are overwhelmed, and we will be in a rush to serve other clients. If parents ask for the results, they will be shown.” – 35-year-old female nurse.
Caregivers saw their role as one of treatment supervision and encouragement. None suggested that they explained viral load test results beyond whether they were low or high. This could be because caregivers, particularly those who are HIV-negative, are also unaware of this information.
“Our job as parents is to encourage them to take their medication correctly without skipping and taking it on time so that their viral load will remain low and taking balanced diet meals. We also encourage them, if they are dating, to use protection so that they will not spread the virus and protect their partners.” – 45-year old caregiver.
When adolescents received their HIV viral load test results, those with a low or undetectable HIV viral load often assumed that no adjustments were needed when staff didn’t discuss their results with them. Unfortunately, this missed an opportunity to provide direct reassurance about what could be deduced from an undetectable result or to incentivise further continued adherence.
Many adolescents considered that their relationships with healthcare workers hinged on the return of a “low” test result.
“I get along with the nurses because I follow their instructions and I take my medicine on time.” – 11-year-old boy.
This suggests that a smooth relationship depends upon demonstrating (through viral load test results) good adherence behaviour. Young people anticipated that healthcare workers would interpret a “high” viral load as reflecting disobedient or troublesome behaviour, which may negatively impact their relationship. They considered that viral load monitoring risked punitive consequences, as it served to identify and potentially “catch out” those who are struggling.
Caregivers’ viral load literacy was also limited as they did not all attend the clinic with their child and had limited contact with healthcare workers. They would often receive information accidentally when the clinic called to search for their child, who may have missed a review or received a high viral load test result. Even caregivers who could attend the clinic with their child rarely received personalised information about their child’s health status, and clinic reviews only provided minimal discussion of their child’s results.
Despite the low levels of viral load literacy among participants in this study, the authors note that these participants were all attending support groups providing psychosocial support for young people with HIV and so are likely to have better understanding than those who are not engaged in support programmes, suggesting that low levels of viral load literacy are expected to be a widespread problem.’
The authors argue that only using test results to identify adherence behaviour fails to take advantage of a valuable opportunity to improve health literacy and motivation among adolescents and provide tailored support. Additionally, by creating a false dichotomy that adherence is either good or bad, it fails to acknowledge that achieving and maintaining viral suppression is challenging and likely to be an imperfect journey.
They recommend the following interventions:
- Viral load test results should be translated from just a number to a story that extends beyond the clinic into young people’s social lives, both present and future. This will spark the potential of viral load to radically transform young people’s relationship with their health and treatment.
- Health workers should be equipped with effective communication skills, tailored resources and guidelines. Viral load literacy can be further reinforced by trained peer counsellors. The research has contributed to the development of viral load literacy resources in Zimbabwe.
- The U=U message should be embedded within the broader understanding of viral load literacy in age-appropriate ways. This approach may help address the concerns of carers and health workers regarding complacency and inconsistent access to testing. It may also reduce the risk of adolescents hearing about U=U without fully appreciating how HIV treatment makes it possible.