ACQUIRED IMMUNE DEFICIENCY
SYNDROMEThe human immunodeficiency virus (HIV) was first
discovered in the early 1980s and has now been estab-
lished as the cause of acquired immune deficiency
syndrome (AIDS). HIV works by attacking the im-
mune system, the human body’s defense system that
fights off foreign invaders, such as germs and bacte-
ria. The immune systems of people with HIV are ulti-
mately weakened to the point that illnesses such as
pneumonia and other infections can take over, even-
tually leading to death.
Epidemiology and Transmission
Since the early 1980s, HIV infection has emerged
as a major health problem for children in the United
States and many other parts of the world. The Centers
for Disease Control and Prevention (CDC) estimated
that in 2000 more than 431,000 people in the United
States were living with HIV, and that approximately
5,575 of these individuals were children under the
age of thirteen. The World Health Organization esti-
mated in 2000 that about 1,600 children around the
world were becoming newly infected each day.
HIV lives in body fluids, such as blood and semen,
and transmission occurs primarily through unpro-
tected sex (both heterosexual and homosexual) and
the injection of illicit drugs. The virus can also be
transmitted from mother to child during pregnancy
or at the time of delivery, but medical advances have
led to a significant reduction in these cases because
pregnant women are now encouraged to undergo vol-
untary HIV testing. If a woman is found to carry the
virus, doctors can begin administering medication to
her right away and to her infant after birth. The rate
of transmission through contaminated blood or blood
products (i.e., via transfusions) was high until 1985
when measures were put into place to ensure the safe-
ty of the blood supply in North America, Europe, and
some other parts of the world. Transmission still oc-
curs from an unsafe blood supply in some underde-
veloped countries.
Originally, AIDS was viewed as a death sentence,
with only 5 percent to 10 percent of people living for
three years after diagnosis. Now, new medications
have led to a dramatic decline in AIDS-related deaths.
HIV is therefore seen as more of a chronic disease,
similar to diabetes or cystic fibrosis. As a result, psy-
chologists are focusing more on psychosocial issues in
children who were infected early in life and are now
living into adolescence and young adulthood.
Developmental and Social Impact on the
Child
How a child copes with his HIV infection depends
on his age and developmental stage, cognitive abili-
ties, and general psychological makeup. One must
also assess the child’s stage of illness and the way in
which the parents cope with the illness. Together,
these factors determine the meaning the illness car-
ries for the child, and the mental resources they pos-
sess to help them deal with each new challenge during
the process of learning about their illness.Infancy through Preschool
Children younger than two years of age are un-
able to grasp the concept of being diagnosed with a
life-threatening disease. As a result, the psychological
impact of the diagnosis falls mainly on the child’s car-
egiver(s). Parents may feel horrified at the idea of los-
ing their child to a disease that they essentially ‘‘gave’’
to their children. They may benefit from psycholog-
ical services that offer support and guidance for cop-
ing with these feelings of fear and guilt. Infants and
toddlers, on the other hand, are most concerned with
immediate events, such as painful procedures and
separation from their parents. Psychologists can help
parents prepare their child for medical procedures
through role-playing, medical play, and coloring
books that illustrate the procedure.
Another concern for small children with HIV is
that the virus can invade the brain and central ner-
vous system, creating problems with language, motor
skills, and general cognitive abilities. For this reason,
regular developmental and neuropsychological test-
ing is recommended in order to identify deficits and
to assist in obtaining special educational services as
needed. These assessments should begin during the
first year of life and should continue throughout
childhood and early adolescence.School-Age Years
Diagnosis disclosure and medical adherence are
two important issues that arise during an HIV-
positive child’s school-age years. Nearly all parents
struggle with the idea of diagnosis disclosure, the pro-
cess of telling children that they are living with a life-
threatening illness. Research with other diseases has
clearly documented the risks of keeping the diagnosis
a secret and the benefits of open communication
about illness in the family. Because of the stigma at-
tached to this disease, however, disclosure poses
unique difficulties in families affected by HIV/AIDS.
Parents’ concerns include the fear that knowledge of
the diagnosis will traumatize the child and the pos-
sibility that their child will tell others about their ill-
ness, thereby putting themselves at risk for being
teased and ridiculed by peers. Thus, the diagnosis fre-4 ACQUIRED IMMUNE DEFICIENCY SYNDROME