What Parents Should Know
by Tiffany A. Chenneville & Howard M. Knoff,
University of South Florida
Acquired Immune Deficiency Syndrome (AIDS)
is not only a health crisis, but a social crisis that has affected
every sector of the United States. The number of persons with
AIDS in the United States is staggering, and it continues to
multiply. Furthermore, the growing number of individuals infected
with the Human Immunodeficiency Virus (HIV), the virus that
causes AIDS, is even more disturbing. Nobody is immune because
AIDS does not discriminate by sexual orientation, gender, race,
socioeconomic status or age.
The failure of AIDS to discriminate by
age is evident by the growing number of children and adolescents
infected by HIV/AIDS. There also are scores of children who
are not infected, yet are affected by HIV/AIDS because one or
both of their parents, or other family members, have been diagnosed
as being HIV positive or having AIDS. In fact, an increasingly
large number of children have been orphaned by parents who have
died from AIDS. It is estimated that over 80,000 children will
have been orphaned by the year 2000 due to parental deaths caused
by AIDS. Non-infected children and adolescents also may be affected
through their association with peers or significant others who
are HIV positive, have AIDS, or who have lost loved ones due
HIV/AIDS in Children and Young Adults
As of June, 1996, over a half a million
(548,102) diagnosed AIDS cases had been reported to the Centers
for Disease Control. Approximately 1.3% (or 7,296) were children
less than thirteen years old. This is a significant increase
from the 3,898 pediatric AIDS cases reported just three years
before in 1992. Relative to adolescents, the incidence of AIDS
also is considered to be large and increasing. In fact, AIDS
is considered to be one of the leading causes of death among
teenagers, and it is estimated that two individuals under the
age of 25 are infected with HIV every hour. AIDS is also the
leading cause of death for people between the ages of 25 to
44 in the United States. This is significant because it is believed
that many of the young adults currently infected with HIV/AIDS
may have contracted the HIV virus during adolescence. Thus,
adolescent incidence figures may underestimate those who contract
HIV but do not exhibit its symptoms until early adulthood.
Relative to gender, HIV is being contracted
more rapidly by women, including young girls and adolescents,
than by men. Critically, the large and increasing number of
females with AIDS also increases the probability of children
being born with HIV due to pre-natal or peri-natal transmission.
It is estimated that 25% of infants born to HIV-infected mothers
will themselves become infected. These children represent one
of the fastest growing groups testing positive for the HIV virus.
- HIV - Human Immunodeficiency
Virus, the virus that causes AIDS.
- AIDS - Acquired Immunodeficiency
Syndrome, the condition that results from HIV infection. AIDS
is distinguished from HIV by the presence of an opportunistic
infection or a T-cell count of 200 or less.
What We Know About HIV/AIDS
HIV is transmitted through blood, semen,
vaginal fluid, and in some cases, breast milk. This allows for
many possible modes of transmission including the following:
- Sexual contact (vaginal, anal, oral)
with an HIV-infected person
- Sharing needles or syringes with someone
who is HIV positive
- Mother to child transmission during pregnancy,
during delivery, or in some cases, through breast feeding
- Blood transfusion with contaminated
blood products, although the risk of HIV transmission through
blood transfusions is minimal given current blood screening
practices employed by blood banks.
It is critical to note that HIV is not
transmitted through casual contact.
- Abstinence from sexual activity
- Condom use during sexual activity (vaginal,
anal, and oral)
- Not sharing needles or syringes
It is critical to note that condoms are
not 100% effective but greatly reduce the risk of HIV transmission.
Facts about AIDS
- You cannot tell if someone has AIDS by
looking at them.
- Currently, there is no cure for AIDS.
- Currently, there is no immunization to
guard against the transmission of HIV.
- AIDS affects people of all ages, races,
and socioeconomic status, and individuals with different sexual
orientations including heterosexuals, bisexuals, and homosexuals.
- No cases of AIDS have been reported due
to kissing, biting, or mosquito bites.
- HIV is not transmitted through touching
- HIV cannot be contracted from donating
- There are no reported cases of HIV being
transmitted from child to child or child to staff member in
a school building due to fights or contact sports.
Impact of HIV/AIDS on Children and Adolescents
Many issues relative to academic and social
development and functioning arise for children and adolescents
with HIV or AIDS. In addition to the physical implications of
HIV/AIDS, there are various neurological and psychosocial implications
as discussed below.
HIV infection suppresses the immune system
making persons testing positive for HIV vulnerable to opportunistic
infections and illnesses which include, but are not limited
to, certain forms of cancer, pneumonia, and fungal infections.
Therefore, the physical symptoms experienced by persons with
HIV or AIDS will vary according to their physical condition
and the impact of these illnesses. HIV-infected individuals
who have not been diagnosed with an opportunistic infection
may also experience generalized symptoms associated with immune
suppression such as fatigue, diarrhea, weight loss, fever, and
night sweats. To date, there is no cure for AIDS; however, pharmacological
therapy (e.g., antiretroviral medications, protease inhibitors)
is used to prolong the onset of symptoms.
Antiretroviral medications, as well as
medications which help to prevent serious opportunistic infections,
are thought to be partially responsible for extending the life
of HIV-infected individuals.
However, the quality of life for such individuals
can be negatively affected by subtle, progressive and insidious
problems directly resulting from HIV infection, including neurological
impairment. HIV infection and AIDS not only impact the immune
system, but also the central nervous system. In fact, it is
hypothesized that HIV may directly infect the brain. As such,
neurological impairment may result from either a direct attack
on the central nervous system or through opportunistic infections
that the body cannot stop due to HIV or AIDS.
Many children infected with HIV experience
some degree of difficulty resulting from developmental delays
and/or cognitive disabilities. It is known that HIV infection
can interfere with the normal brain development of children,
resulting in neurological damage. This is especially true for
children infected during and shortly after birth, whose central
nervous systems are not yet fully developed at the time of infection.
Among other types of brain damage, visual and auditory short-term
memory loss, attention deficits, language disorders, spatial
ability problems and language difficulties may be observed in
children with AIDS. Furthermore, moderate to severe mental retardation
is associated with certain neurological disorders caused by
While HIV-related neurological impairment
in children is commonly associated with cognitive delays, neurological
impairment in adolescents is more commonly associated with cognitive
deterioration. Neurological damage commonly results in the death
of children with AIDS.
Many of the symptoms reported by children
with AIDS are similar to those experienced by children living
with other chronic illnesses. Such symptoms include loss of
abilities, physical impairments and the fear of impending death.
Each of these may result in psychological reactions, including
anxiety and depression. However, the social experiences of HIV-infected
children differ from those of children with other chronic illnesses
in several ways. First, many HIV-infected children, especially
those who contract the virus perinatally, may have to cope with
losses associated with AIDS-related illnesses and deaths within
their families. Second, HIV-infected children are likely to
experience additional risk factors: chronic poverty, housing
problems, nutritional problems, poor access to medical and social
support services, and exposure to violent or dangerous neighborhood
environments. Third, and most important, is the stigma associated
with HIV/AIDS. AIDS-related stigma is the result of both fear
and discrimination. Attempts have been made to deny rights to
individuals infected with HIV/AIDS, including the right to employment
and the right to a free and appropriate education. Although
federal and legal mandates attempt to protect the constitutional
rights of people with AIDS, stigmatization and discrimination
What Can I Do as a Parent?
- Pregnant mothers who are not known to
be HIV positive but have engaged in high-risk behaviors that
increase the likelihood of HIV transmission should be tested
for the virus so that precautions can be taken to reduce the
risk of transmission to the unborn child, if needed.
- Pregnant mothers who are known to be
HIV positive should share this information with their physician
so that precautions can be taken to reduce the risk of transmission
to the unborn child. Antiretroviral medication taken by pregnant
mothers has been shown to reduce the rate of mother-to-child
transmission during pregnancy or delivery from 25% (without
medication) to 8% (with medication).
- It is a well-documented fact that children
model their parents' behavior. Therefore, it is important
that parents model appropriate behavior that emphasizes problem
solving and informed decision-making. It also is critical
that parents model behavior that discourages discrimination
and prejudice against persons with HIV/AIDS. This type of
modeling by parents not only impacts their own children, but
also the communities in which they live.
- Parents have a responsibility to educate
themselves and their children about HIV/AIDS in an attempt
to prevent the spread of this deadly disease. Parents must
be knowledgeable about the modes of transmission and the modes
of prevention if they are to educate their children about
how to protect themselves. AIDS education policies relative
to what can and cannot be taught vary among schools. Therefore,
parents cannot rely solely on their school systems to provide
accurate information to their children about how to prevent
contracting HIV. Parents can educate themselves by taking
courses offered by the American Red Cross (see the Resource
section below for an 800 number) or other local community
- Parents should be aware of the relationship
between alcohol/drug use and HIV/AIDS. Alcohol and drug use
are considered risk factors for the transmission of HIV because:
(a) it is a known fact that alcohol and drugs decrease inhibition,
thus increasing the likelihood that individuals will engage
in high risk behavior such as unprotected sex; and (b) intravenous
drug use is known to be a high risk behavior that may result
in HIV transmission. There are also many other negative consequences
of alcohol/drug use not associated with HIV/AIDS. Therefore,
it is important that parents educate their children about
risks associated with alcohol/drug use and attempt to promote
abstinence from such substances.
- Do not be fearful if your child is in
a classroom with a child who is HIV infected or who has AIDS.
Remember that there are no documented cases of AIDS transmission
due to casual contact, biting, fighting or contact sports.
- Universal precautions should be maintained
when coming into contact with blood or other bodily fluids
that may contain blood. Universal precautions refer to the
use of gloves and disinfectants when in contact with blood
or blood-contaminated products.
- Remember that HIV cannot be transmitted
through personal contact such as hugging and kissing. It is
critical that loving and affectionate contact be maintained
with a child with HIV/AIDS.
Centers for Disease Control National AIDS Hotline:
Centers for Disease Control AIDS Clearinghouse:
American National Red Cross: 800-26-BLOOD
American Civil Liberties Union/AIDS and
Civil Liberties Project: 800-592-1513
Drug Abuse Treatment Information Referral
AIDS Action Council, 2033 M Street NW,
Suite 802, Washington, DC 20036; (202) 293-2886
American Institute for Teen AIDS Prevention,
P.O. Box 136116, Ft. Worth, TX 76136; (817) 237-0230
American Red Cross, HIV/AIDS Education Office,
1709 New York Avenue NW, Suite 208,
Washington, DC 20006; (202) 434-4077
National Coalition for Advocates for Students,
100 Boylston Street, Suite 737, Boston, MA 02116; (617) 357-8507
National Gay and Lesbian Task Force, 1734
14th Street NW, Washington, DC 20009; (202) 332-6483
National Gay Rights Advocates, 540 Castro
Street, San Francisco, CA 94114; (415) 863-3624
Planned Parenthood Federation of America,
810 Seventh Avenue, 14th Floor, New York, NY 10019; (212) 541-7800
Sex Information and Education Council of
the United States (SIECUS), 130 West 42nd Street, 25th Floor,
New York, NY 10036; (212) 819-9770
Journal of the American Medical Association
Books for Children and Teens
Christie-Dever, B. & M. Ramsey (1996).
AIDS: Answers to questions kids ask. Learning Works. (Age
Christie-Dever, B. & M. Ramsey (1996).
AIDS: What teens need to know. Learning Works.
Hyde, M.O. (1994). Know about AIDS
(revised). Walker & Co.
Hyde, M.O. (1995). AIDS: What does it
mean? (5th edition). Walker & Co.
Jussim, D. (1997). AIDS and HIV: Risky
business (teen issues). Enslow Publishers.
Silverstein & Silverstein (1989).
Learning about AIDS. Enslow Publishing.
© 1998 National Association of School
Psychologists, 4340 East West Highway, Suite 402, Bethesda MD
20814 phone 301-657-0270.