I learn so much about our HIV care system whenever I am seeing
patients in the clinic with the clinical officers. I learn about
what is working and what is not working. With every patient who is
not growing or who is overdue for a lab test or who needs a new set
of medicines, I figure out something new about how we can better
take care of HIV-infected children and their families here in
Usually, I am learning about things that are not working. Today,
I had the opposite privilege.
I was working with a clinical officer named Titus who sees many
of the adolescent patients. He told me about a 15-year-old girl who
has been coming to this rural clinic for several years now. Mary
makes the hour-long walk to clinic by herself, she manages her own
medicines, and she is in high school. The clinical officer had
assumed that she knew that she was infected with HIV and as he
questioned her about whether she was missing doses of her medicines
or having any coughs and fevers and all the other things we ask
about, he had never thought to ask her whether she knew why it was
she was taking these medicines. Titus usually conducted the whole
visit without mentioning HIV.
Then, my research project starting inserting this questionnaire
into his routine work where we have the clinicians ask parents and
children about whether they know why it is they are coming to
clinic and why they are taking these medicines. We want to find out
whether they have gone through the disclosure process and what the
impact of learning that you have HIV might be - for good and for
"Those questions have really changed me," he said. "My outlook
is very different."
Titus discovered that most of the patients for whom he had to
complete those study questionnaires did not know that they had HIV.
Even among the older children and adolescents, most had never been
told why they were taking the medicines or coming to clinic. He was
so surprised by this that he started asking those questions with
every family that he encountered in clinic. (Exactly what I was
hoping would happen!)
Titus was even more shocked to learn that 15-year-olds like Mary
- and even a 17-year-old girl who he had been caring for over many
years - had never been told that they had HIV. They had never been
given the chance to process that information, to ask questions, to
wrestle with that meaning, to accept responsibility for their
disease and for their treatment.
"Now, I am asking everyone," reported Titus. "And it is very
emotional to start talking with these adolescents about their
disease. They are shocked. Their world is changed. And yet, it is a
must to help them with this."
A must, indeed.