“Adherence to medications and heath care is critical; having insight into their adolescent issues and culture is crucial for getting them into care and on meds that are keeping them healthy and making them less infectious. Kids have adherence issues,” says Schwartz. “Some have gone through lots of drugs and have extensive drug resistance.” In fact, antiretroviral drug resistance has been found in treatment-naïve and pretreated children.22,23
“Teens with chronic disease have to develop self-efficacy. Having insight into adolescent issues and culture is crucial for getting them into care” says Schwartz. Supportive relationships and good communication with their caregivers increases adherence among children and teens.24,25 As with adults, adherence among children and adolescents is improved by strong patient–physician relationships.26,27
“I can teach you HIV, but I can’t teach you to care and love children and their families; you have to bring that with you,” says Garcia. “We have a family-centered model—you can’t work with kids without their families. But sometimes you are the surrogate everything—parent, aunt, grandparent. Kids always look for a family member when their own family is not optimum.”
Schwartz agrees. “Our clinic has become an extended family,” she says. “Thanks to Ryan White we have wonderful clinical and support services; these kids see us as people who support them, don’t judge them, and help them to grow up with HIV. They have few adult role models, so they come in or call for help with other things in their lives. We help them to grow up and become more independent. Ryan White has provided continuity.”
Yet the transition from pediatrics to adulthood can be tricky. “It is hard to transition from a children’s clinic to the adult world. Thanks to Ryan White, we have a multidisciplinary adolescent clinic—but at a certain time, you have to go downstairs to the adult clinic,” says Schwartz.
In Florida, Garcia and her colleagues created a special program to help perinatally infected kids transition from pediatric to adult care. “Transitioning kids to adult care is hard. We have a tiny, specialized transition clinic that delivers HIV primary care. It’s a yearlong dress rehearsal for 24-year-olds. A case manager helps, but when they are 25, they are assimilated into our 300-patient clinic.” (To read the HRSA CAREAction newsletter on transitioning from adolescent to adult care, see the PDF available here.)