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
- One of my study coordinators evaluates a
family in the clinic.