quently becomes a guarded secret that is considered
shameful, embarrassing, and potentially explosive if
revealed. Maintaining this secret places tremendous
stress on all members of the family—especially the in-
fected child. It is primarily for this reason that parents
put off sharing information about the virus with their
children. But children who are not told about their ill-
ness sometimes become increasingly resentful of hav-
ing to take numerous pills, many of which are large
and difficult to swallow. Liquid medications are no
better, often tasting extremely unpleasant. This can
lead to daily power struggles between the parent and
child when the time for medication arrives.
Disclosure best takes place in a supportive atmo-
sphere of cooperation between mental health profes-
sionals (e.g., psychologists, social workers) and
parents. It should be thought of as a process rather
than a single episode. Emotional reactions following
disclosure vary but tend to be consistent with the way
the child has responded to earlier crises. If disclosure
is conducted in a supportive manner, almost all chil-
dren demonstrate considerable pride with mastery of
information about the illness and an improved ability
to tolerate procedures such as blood draws and pill
swallowing. Many parents report that their child’s
medication adherence improves following disclosure.
Also, participation in support groups, art therapy,
and family therapy can help the children to continue
processing the information that they have been given.
Preadolescence and Adolescence
Among adolescents infected with HIV, the prima-
ry difficulties involve the virus’s impact on their social
life, medication adherence, and grief over past losses
and their own uncertain future. The most damaging
result of HIV in a teenager’s life is often its effect on
relationships outside the family. These adolescents
live in fear of others finding out about their diagnosis.
In fact, they may fear rejection more than they fear
dying from the disease. It may be difficult to form
friendships, since they may always feel the shadow of
secrecy coming between them and their peers. Dating
creates even more anxiety, since they may not know
how to handle issues of sexual intimacy, honesty, and
trust.
Adherence to treatment remains a problem dur-
ing adolescence—most of the drug regimens are ex-
ceptionally complicated and difficult to follow. The
large number of pills, the need for timing meals with
medications, and the very specific storage instructions
make keeping up with the schedule quite challenging.
When considering AIDS-related stigma and adoles-
cents’ desire for peer approval, as well as the side ef-
fects frequently associated with these drugs (e.g.,
stomach bloating and diarrhea), one can see how
‘‘skipping a few pills’’ could easily occur. If a patient
does not take his or her medicines consistently, then
there will not be enough medicine in the blood to stop
the virus from growing. When this happens, the virus
becomes stronger, and the medicine loses its ability
to fight the virus. In other words, the virus becomes
resistant to the medicine. Many anti-HIV medicines
are so similar that once HIV becomes resistant to one
particular drug, it may be resistant to other drugs that
it has not been exposed to yet.
Many of these youngsters have experienced mul-
tiple losses in their early years, and they find them-
selves grieving for their parents, siblings, and/or close
friends who did not live long enough to benefit from
the drugs currently available. Others have been shuf-
fled between households, schools, and neighbor-
hoods. Depression and anxiety about these multiple
losses, their uncertain future, and guilt surrounding
survival can lead to disabling mental health problems.
Most HIV-infected teens either have limited ac-
cess to, or will not participate in, mental health ser-
vices. If these issues are not appropriately addressed,
however, AIDS can affect virtually every aspect of an
adolescent’s life. Physical symptoms (e.g., fatigue,
aches, pains) and psychological symptoms (e.g., de-
pression, anxiety, substance abuse, sexual acting out)
may become significant problems. If a strong rela-
tionship can be formed with a therapist, issues related
to sexuality, disclosure, family conflicts, and future
planning can be openly discussed.
Because many teens are reluctant to attend indi-
vidual therapy, alternatives such as support groups
and camping programs have been developed. Sup-
port groups offer these teens a sense of belonging and
a place where they can undo the shame and stigmati-
zation that has isolated them from their peers. It is
also a place where their pain can be validated, their
trauma understood, and a deep connection with oth-
ers made. Camping programs can also be helpful by
offering therapeutic activities such as artwork, chal-
lenge courses, campfire chats, and rap sessions.
Through these activities, connections with repressed
emotions and with other people in similar situations
can lead to enormous healing and growth.Prevention
As mentioned previously, medical advances have
led to a decrease in the number of infants born with
HIV. Despite this encouraging trend, the CDC esti-
mated that more than 5,500 children under age thir-
teen were living with HIV or AIDS in the United
States in 2000. Among adolescents thirteen to nine-
teen years of age, the number of AIDS cases reported
each year has increased from 1 case in 1981 to 310
(3,865 cumulative) in 2000. Of even more concern isACQUIRED IMMUNE DEFICIENCY SYNDROME 5