Why do Some Children Struggle to Adhere to HIV Treatment?

This week, we were fortunate to have a visit from Sabine Van Elsland from the Desmond and Leah Tutu Legacy Foundation and VU University, who spoke about her research involving HIV positive children and how they respond to HIV treatment. Getting antiretroviral therapy (ART) to youths is one challenge, however, that is only the first challenge to overcome. An HIV positive person has to take daily medication to suppress the virus; Van Elsland’s research has studied why children succeed or fail in adhering to their ART regimen.

Sabine Van Elsland | Caroline Reid

HIV positive South Africans make up nearly a fifth of the global HIV population. With this burden, there is a high emphasis on successful treatment including access to treatment as well as adherence to treatment. Adherence to the daily ART regimen suppresses the virus. Good ART adherence is essential to reduce transmission and eradicating the virus.

Van Elsland’s research followed just under 200 children and their respective guardians in intervals of thirty days over the course of 1 full year, with a 6 month follow-up period. The mean age of the patients was eight years and around two thirds had an undetectable viral load. Based on pill count, 20-54% of the children were adherent to their treatment.

High levels of adherence were found for families where the disease had a prominent effect on life (school functioning affected, complications and high WHO clinical staging). In addition, children with a high quality of life, from well-functioning households and families with a better socio-economic status were more likely to adhere to treatment, including access to amenities such as a TV, a fridge or a bicycle.

Low levels of adherence were found in families with difficult family relationships, caregivers who experience difficulties administering medication and families who did not disclose the HIV status to the child. Important were the differences found in determinants of adherence between boys and girls and in particular the differences between adherence behavior (based on pill counts) and reported adherence (self-report). These data are useful indicators for future research into how to ensure successful adherence.

Analysing when adherence was successful is as important as when it is unsuccessful. Patients who did not have perfect adherence had a variety of reasons: mix-ups when different caregivers were responsible for the child, side-effects, the taste, running out of pills and simply forgetting.

Ultimately, the goal is to find ways of connecting healthcare systems with community based care (including faith networks and other structures in these communities). This way, support can be sustained for children taking ARTs outside of a clinical setting.

We thank Van Elsland for her fascinating and insightful presentation. We wish her the best of luck with her future research endeavours.


Written by Caroline Reid