No Longer a Child
Transitioning Into Adult Care Terrifies Youth With HIV
What is transitioning? It's the process of forcing adolescents and young adults -- many of them positive since birth -- to leave behind the cocoon of their pediatric clinic and enter into adult healthcare.
Ruth Martin, Director of Social Work for Pediatric Infectious Diseases at the University of Chicago Children's Hospital, sums it up as, "They don't want to go." And, she adds, a lot of the doctors don't want to let them go.
"We used to have kids from zero to 21. Now it's until 24. The other day I heard a doctor say 25. Okay, now, at 25 they're fully grown," says Martin.
Children born with HIV or infected later in their youth may be surviving and fully grown, but their move into adult care is a first in medical history. No other disease is as serious and as new for youth transitioning to adulthood. HIV is not like childhood diabetes or cancer or anything else, particularly with the stigma attached to the virus that complicates every aspect of living with it.
Says Brawner, "When you're a child and no one knows your status, your healthcare workers become your family. They know everything and you don't want to talk to anyone else. When you transition into adult care you have to find a new family."
With the special bonding to a child facing a life-threatening disease comes the extra care that healthcare workers provide children and their families that adults are not privy to. "In pediatrics, you're handheld through the process," says Brawner, "and you know when you're an adult you're left on your own almost."
"We are surrogate parents and caregivers of sorts," says Martin. "They get a lot of wonderful attention, and they know when they go to an adult clinic they're going to get treated like adults. People aren't going to spend a lot of time with them. Now they have to go to a doctor and listen carefully to what they're told. Before, they had a parent to reinforce what they were supposed to be doing."
At 26, Brawner is on his third attempt at transitioning. Born in 1979, he suffered a severe burn to his leg from hot water ("that's a whole other story," he says) when he was one and a half that led to a blood transfusion. When he was three, his mother received a call from the hospital where he was treated, informing her that the blood donor for his transfusion had died from GRID, or "gay-related immune disorder" as AIDS was then called, and that the disease had most likely passed on to her son. Brawner was found to have symptoms of illness (there was no HIV test at the time) and began to be seen at the immunology division of the children's department of a large West Philadelphia hospital where he is treated to this day.
His first attempt at transitioning came at 16, when his clinic tried to transition him out of pediatrics and into adolescent care. He did not like the doctor and went back to pediatrics.
"I went to the doctor one time and didn't feel comfortable," he says. "It was too much of a process to open up. There was a lot of personal information I had to share during my visit, like adolescent issues, things my doctor already knew. To trust new people -- it's just a lot."
Martin agrees. "Some of our patients were drug exposed. Some were in foster care. Many of them don't know who their parents are or where they came from. Dealing with sexuality and disclosure -- there are a whole lot of psychosocial issues that we're working with."
Brawner's second attempt came when he left home to attend Howard University in Washington, D.C., where he earned a degree in sociology. But he did not like that doctor either and never went back.
"I would just see my doctor when I came home for breaks. I didn't want to see another doctor, especially in D.C., where people might see me going in to a clinic and wonder what I have. I was only going to be there for four years, although I ended up staying for six. So during that time I wasn't seeing a doctor as much as I should have," Brawner explains.
This new transition is "totally by force," he says. He needs adult services that his doctor cannot provide. The search for a new doctor took months of intense work for Brawner. "You have to figure out who's good, what the hours are and everything else, and see the place in person, and in the meantime, you still want to see your pediatrician."
One of the ironies of transitioning is moving from a children's hospital which is large by its nature to a much smaller adult clinic. The youth suffer over the possibility of trading their anonymity for the risk of being recognized as an HIV patient. "In a large hospital, nobody knows what you're going in for," says Brawner.
Martin says the worry about confidentiality the young patients of her clinic experience often evaporates. "It's like that worry about support groups -- 'Am I going to see someone I know?' I tell them, 'Then they're there for the same thing.' Or they say, 'I don't know anybody there.' They have a sense that the people in the new clinic won't care, but they don't know that unless they go."
She does recommend, however, that youth be introduced to at least one person at their future clinic "so there's at least one friendly person there they know."
She says the youth she works with sometimes find out their anxiety was needless when everything works out and they're happy with their new provider. "It's just not going to be the coddling and babying and calling 10 times for each appointment that they're used to," she notes.
She also recommends that the provider discuss transitioning at least a year before it takes place. Young people should also be told what other services and support are available in addition to medical care -- "That would be encouraging." At the University of Chicago Children's Hospital, social work is provided for youth with HIV for a year after they leave. "Here they can also stay with the same case manager, so they're a little less reluctant to move on."
The difference between an adult clinic and youth care should be explained. "Let them know the follow-up isn't going to be as good," Martin says. "Here we have 115 kids up to 22 years old. The adult clinic has 600 patients and they have only one social worker and no case manager. They don't take as much time on anything, whether it's medical or social or anything else. Can you imagine with the great number of people they have trying to keep up with everyone? We can spend an hour talking about adherence and they can't. At the same time, the patients are growing up and they need to learn to take responsibility for their own health. They want to be emancipated at some point and live their lives the way we all do."
Martin admires the process at the CORE Center in Chicago, where a doctor or nurse practitioner from the adult clinic attends the visits of the youth patient for one year before transition takes place. "That's a great model," she says.
Brawner recommends that young people talk to other positive people for suggestions and that they interview doctors. "Ask around. Make some phone calls. Figure out what you want the most in a doctor and get the one who has the most from the list." Also, check the facility in person. "If you don't feel comfortable, you're not going to go there."
He offers simple suggestions for clinics that may nevertheless be a tall order. "Make sure your environment is patient friendly. Make sure your environment is clean. Make sure your front desk receptionist has a lot of patience and doesn't have a negative attitude. Have someone available who can be reached 24 hours a day, seven days a week -- this is a 24-hour disease. Have materials on hand so they can learn. Be timely -- I don't want to sit there for eight or nine hours. Have confidentiality. I don't want everyone to know that I'm walking into a clinic for HIV-positive patients."
"It's all a numbers game, a business," Brawner says, "but I want to be seen as a person."
Visit Brawner's website at www.williambrawner.com.
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