I recently had the pleasure of speaking with Dr. Rachel Vreeman, Assistant professor of Pediatrics at Indiana University School of Medicine, and Co-Director of Pediatric Research for AMPATH, about the challenges of pediatric ART adherence.
Dr. Vreeman was kind enough to answer a few questions about her work in Kenya with AMPATH and has expanded on some of her responses in the video at the end of this post. She will also be fielding questions about pediatric ART adherence in GHDonline’s Adherence and Retention community next week, from April 9th to the 13th. Please sign up for GHDonline now to join this discussion!
Tell us about your work in this space, when did you first become interested in pediatric adherence and retention and how did you come to work with AMPATH?
As a pediatrician and a health services researcher, my big interest is how we can best provide high-quality care for children within clinical systems with very limited resources. When I started working with AMPATH and with the Indiana University School of Medicine in 2006, it was very clear in our clinical system that adherence was one of our biggest, long-term challenges. Every clinician I spoke with and every family I saw in clinic wrestled with the complicated task of having children take the HIV medicines every day for the rest of their lives and what this looked like in place like Kenya.
What do you see as the biggest barriers in pediatric adherence?
While many families struggle with every day challenges such as forgetting to give the medicines when they are busy, missing a dose because the parent is away from the child and working, or a child not wanting to take the medicines because they have grown tired of taking medicines that they are taking for reasons they do not understand, the biggest barriers underlying pediatric adherence are the much deep ones of disclosure and stigma. Parents are very hesitant to tell any other people about their child’s medicines or to enlist the help of others in caring for the children because they fear stigma and discrimination. This often creates barriers to adherence where they delay doses because others are in the home or they do not have anyone to help give the child the medicines when the primary caretaker is away. The fear of stigma also creates a deep culture of secrecy and isolation for the family. In addition to disclosure to other people, not disclosing HIV status to children is another huge barrier to pediatric adherence.