Acquired Immune Deficiency Syndrome

Infancy through Preschool

Children younger than two years of age are unable 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 caregiver(s). Parents may feel horrified at the idea of losing their child to a disease that they essentially "gave" to their children. They may benefit from psychological services that offer support and guidance for coping 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 nervous system, creating problems with language, motor skills, and general cognitive abilities. For this reason, regular developmental and neuropsychological testing 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 process 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 attached 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 possibility that their child will tell others about their illness, thereby putting themselves at risk for being teased and ridiculed by peers. Thus, the diagnosis frequently 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 infected 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 illness sometimes become increasingly resentful of having 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 atmosphere of cooperation between mental health professionals (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 children 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 primary 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 during adolescence—most of the drug regimens are exceptionally 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 adolescents' desire for peer approval, as well as the side effects 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 multiple losses in their early years, and they find themselves 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 shuffled between households, schools, and neighborhoods. 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 access to, or will not participate in, mental health services. 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., depression, anxiety, substance abuse, sexual acting out) may become significant problems. If a strong relationship 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 individual therapy, alternatives such as support groups and camping programs have been developed. Support groups offer these teens a sense of belonging and a place where they can undo the shame and stigmatization 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 others made. Camping programs can also be helpful by offering therapeutic activities such as artwork, challenge 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.