The
transition process from paediatric to adult care begins after your child has
gone through puberty. Your child’s clinic will prepare a plan for making this
move, based on your child’s needs and wishes. Preparation can be done
gradually, and the transition made when your child feels ready.
Your
child may benefit from the support of other young people with HIV during this
time. It can be a very good way for them to gain confidence in the management
of their HIV. Meeting other young people facing some of the same issues can
help reduce isolation, increase self-esteem, and enable them to develop skills
in making informed treatment and care decisions. HIV support organisations and
clinics can tell you and your child about peer support services, or you can use
NAM’s e-atlas or CHIVA’s
service finder to see what’s available in your area. CHIVA runs a summer
camp for young people with HIV (see http://www.chiva.org.uk/camp/index.html),
which offers fun activities as well as the opportunity to talk to peer mentors
and other support workers about living with HIV, in a safe environment. This
can be particularly useful if you live in an area where there are no regular
support groups. Young people have made supportive and long-lasting friendships
at these camps.
You
may sometimes find it hard to have less involvement in your child’s health
care. Making the transition from paediatric to adult HIV care may feel a
frightening thought for you and your child.
The
transition begins when your child starts to have some sessions with clinic
staff without a parent or carer there. Over time, a young person will be given
more control over information and decisions about their health. This can be
stressful for parents and carers, but it is important for your child’s
progression into living with HIV as an adult. Talk to your child’s healthcare
team if you have concerns, and ask your child what input they would like or
need from you. As young people take more ownership of their health care, they
will still want support and guidance. The National Children’s Bureau leaflet for
parents and carers of young people with HIV, Their life, has useful information on this process (see http://www.ncb.org.uk/media/874849/their_life.pdf).
Some
HIV clinics now have clinics for families and for adolescents. These help to
gradually transfer their treatment, care and support to adult HIV services.
They can offer services that will help your child adjust to living with HIV as
a grown-up, responding to the emotional and practical issues they are likely to
encounter.
If
there isn’t a specialist clinic, your child will be gradually introduced to an
adult HIV clinic. This is likely to happen when your child is between 16 and 18.
The transition will start with joint consultations with the paediatrician who
has been looking after your child and the doctor who will be taking over their
care.
Adult
HIV clinics have a different environment to those offering services to
children. Obviously, the other patients will all be grown-ups, varying in age
from their late teens to advanced old age. The literature on display will be
targeted at adults, and there will certainly be information available about sex
and how to avoid passing on HIV to sexual partners. But there will still be
good support available for your child.
It
is not unusual for adherence to medical treatment to become more of a problem
during adolescence. Teenagers may be more willing to take risks with their
health, to resent having to take treatment each day, and to find it hard to fit
taking medication into their daily routine. They may also be more conscious of
taking medication around other people who don’t know they have HIV.
You
may need to remind them about their HIV treatment more often. Together with
clinic staff, you may also have to set up more support to help your child take
their treatment for a while. There are various tools your child could use to
help remember their treatment schedule, including THT’s Life
Plus app (you can find this on www.myhiv.org.uk)
or iDiary Meds, an app to help young people with HIV remember their
HIV treatment (see www.faithinpeople.co.uk/young-people).
Being able to talk to other young people with HIV can be very helpful.
Adolescence
can be a difficult and changeable time for any child, and there is some
evidence that children with, or affected by, HIV are more likely to become
depressed or anxious. Clinic staff will be keeping an eye on your child’s
emotional and mental health during this period. Talk to them about any concerns
you have about how your child is feeling or coping. There are services and
treatments available to help.