"Staying Near Them" - The AMPATH Pediatric Research Program

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Everlyne never walks into our clinic; she runs. Wearing her brightest dress and her brightest smile, she is a 6-year-old on a mission - to color.

My teams that evaluate families within our HIV care program are well-stocked with crayons, colored pencils, and coloring pages. For many of the children who wait for long hours every month to see the doctor, the warm welcome in our office with art and books is the highlight of their visit.  I watch my sweet and warm staff welcome rushing, radiant Everlyne with the pictures of animals she loves to decorate.

Everlyne's mother likes coming into our special office at the clinic too. It pleases her to see her daughter's smiles, but she also likes the chance to sit with my team, to talk and to be known. As part of our research study on how families are handling the challenge of having a child take these HIV medicines every day, twice a day, for the rest of their lives, we ask parents like Everlyne's mother lots and lots of questions. She sits there for almost an hour answering questions with our team. This is what she has agreed to.

What Everlyne's mother likes, though, is being heard. She talks with my team about a side effect from the medicines and about the days when they do not have enough to eat. She describes the burden of forever keeping these many medicine bottles hidden from her neighbors and her deep fear that Everlyne's seldom-involved father will learn that she and her daughter will have HIV.

My team listens really well, but they also try to respond to whatever a particular mother or grandmother or caretaker is telling them. They might talk with the clinicians about changes that might be needed in the medicines or whether social work could offer some assistance. My team knows every family, every doctor, every scheduled appointment date. When they hear a problem or if a family doesn't show up to clinic, everyone involved (including me) gets a phone call or an email.

From this listening, we learn how to follow and support other families with HIV-infected children in their quest to keep them healthy and strong. We have also learned that this kind of listening - asking questions and providing some degree of case management - makes things better.

Families enrolled in our studies have their child's medication adherence improve significantly in the months that we follow them. We actually see them go from only 50% of children taking as many of their medicines doses as is needed to almost 70% taking the medicines near perfectly.

Something in the space to share and the space to color allows us to stay near families in a way that helps them maintain this regimen of medicines for their kids. And taking these medicines better saves our kids' lives.

Showing off our special adherence monitoring bottles.
Showing off our special adherence monitoring bottles.
One of my study coordinators evaluates a family in the clinic.
One of my study coordinators evaluates a family in the clinic.

 

 

Posted at 00:28

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