hospitals I talked to operated two slightly different models for the transition
from paediatric to adult care, roughly conforming to two different models
suggested by CHIVA.5 At St Mary’s, young people go from the Family
Clinic to the 900 Clinic, specifically for teenagers. St George’s has the Penta Adolescent Clinic (13-
to 17-year-olds) and the Penta Young Person’s Clinic (for 18- to 24-year-olds).
“I have a
role as the transitional care consultant at St Mary’s,” says Caroline Foster.
“My job is explicitly to manage the transition…and to provide continuity of
HIV clinics have wide catchment areas – at St George’s,
families travel in from as far as West Sussex.
This may become a problem for older teenagers and, although most would prefer
to stay with their original hospital, some will need help to move to a local
model of care slowly introduces children to the knowledge that they have HIV
before puberty; they should know the name of their condition by the time they
This is so
that the necessary and sensitive process of sex and relationship education can
start before they start having sex.
Newbould explains how it happens at St Mary’s.
to nine years old, we find, kids often start asking questions such as why they
have to take pills or go to hospital when their brother doesn’t. Many parents really
can’t find the words so we help them. Initially we start giving the kids more
and more information on staying strong and healthy: food, exercise, and their
months later, we’ll check what they remember from our previous talk, and we’ll
introduce the idea of the immune system and talk about cells that fight off
infection, and maybe tell them that they have a condition that stops them
later, we’ll introduce the idea that they have a viral illness, and six months
after that, we’ll name it as HIV. At that point, or at the next visit, if
they’re with their mother, we’ll introduce the idea that their mother has the
find kids react strongly to the specific name of their infection: remember,
they have lived with it since birth, so they don’t face the unknown. Some will
twitch and obviously hold back a reaction: they’re the ones who have already
parents are often much more afraid of disclosure. They’re concerned about the
child going into the class and talking – and we reassure them that they almost
never do – and they’re often consumed by the guilt of infecting their child.
they’re really reluctant we emphasise that there are so many ways the child
could find out accidentally: what if your home village came up on Comic Relief?
What if the name of your medicine came up on TV and they know you take it?”
usually at that stage start talking about safer sex: in any case, we often find
that teenagers prefer a different professional to talk to than one they’ve
grown up with.”
At St George’s, Katia Prime
also believes that it’s hard for teenagers to talk about sex with familiar
doctors. One girl said to her: “I’ve had the same doctor since I was a baby;
he’s like my parent. I can’t talk to him about sex. I don’t want to disappoint
person’s first sexual partner may also be the first person they’ve ever told
about their HIV status,” says Caroline Foster (19-year-old Max, relates just
such an experience later in this issue).
seem to sail through the complexities of negotiating sex and relationships but
for some, especially those who may be more thoughtful and reflective, it can be
really difficult. Boys can suffer a lot of performance anxiety and with girls,
it’s about being sexually empowered enough to even know whether the boy has used a condom, let alone persuade him to if he
doesn’t want to.”
Majewska comments that difficulties in both disclosure and adherence are often
driven by the same anxieties.
girls, I find it’s about peer pressure, of desperately wanting to forget you
have HIV and just wanting to be a normal teenager. So they think ‘If I don’t
take my pills/go to the clinic, I haven’t got it’; similarly ‘If I don’t
discuss it, I haven’t got it’.
boys, yes: terrible performance anxiety: condoms are fiddly enough for teenage
boys anyway, but if you’re frightened of infecting your partner if it goes
wrong, that can be an intolerable pressure. It’s terribly lonely telling
go straight from paediatric care to ‘Did you have vaginal or oral sex?’ in that
really clinical way anyway. We’ll start with the under-12s in talking about
friendships, and about disclosure to friends, asking them to run through ways
of disclosing their status, once they know it, in their minds.”
another health adviser at St George’s
working with teenagers, says: “The first reaction I often get from teens who’ve
grown up with HIV is ‘That’s it. I’m never going to have sex!’ The burden of
responsibility they assume and the fear of infecting their partners is huge.
of that, we emphasise that there are things that we can help with if there’s a
condom accident or just an impulsive night. Sometimes accidents happen.
sure they know about post-exposure prophylaxis (PEP) and we run through the law
on criminalisation of transmission, but in a hopefully positive way – ‘As long
as you’ve told them, you’ve got no reason to fear this’ – that sort of thing.”
Prime adds: “I have on occasion used the argument that if they have an
undetectable viral load on treatment they’re more likely to be less infectious
as an incentive for adherence, but it can backfire. One boy’s girlfriend, who
was negative but came along to talk about it, understood it to mean ‘He only
had a little bit of HIV but he’s all right now’.
I’m surprised how many actually do tell their partners,” she adds. “And very
often they bring their partners in or ask that we talk to them.”
concurs. “Teenagers may be irresponsible sometimes, but they’re dealing with
this whole mosaic of new life tasks that don’t fit together easily, so I’m not
surprised. For instance, a girl asked me if she could stop her HIV treatment
around the time she was taking her exams. She didn’t want that extra anxiety.
we can reduce that anxiety helps. For instance, in the leaflets for teenagers
designed for HYPNET and CHIVA we didn’t mention HIV on the cover, because the
feedback was that they’d be too anxious to carry around something with HIV
prominently there in case it fell out of their pocket.
same time they impress me with their responsibility and protectiveness. For
instance, I know one young woman who actually told partners she had caught HIV
through sex, because she didn’t want to ‘out’ her mum as having HIV.”
reward for me as a healthcare worker,” says Christina Newbould, “is that I’ve
worked as a clinical nurse specialist for seven years and on the AIDS ward
before that. At the time I couldn’t see how these kids could ever have a normal
life if they did survive. Seven years later I have them coming in and saying
‘You see? I told you I’d be OK.’ It’s a privilege to be part of someone’s
normal, adult life.”