ACQUIRED IMMUNE DEFICIENCY SYNDROME

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 estimated 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 unprotected 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 voluntary 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 safety of the blood supply in North America, Europe, and some other parts of the world. Transmission still occurs from an unsafe blood supply in some underdeveloped 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, psychologists 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 abilities, 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 carries for the child, and the mental resources they possess 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 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.

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 estimated that more than 5,500 children under age thirteen were living with HIV or AIDS in the United States in 2000. Among adolescents thirteen to nineteen 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 is that many young adults with AIDS almost certainly acquired their infection as teenagers. Throughout adolescence, teenagers often feel a sense of invulnerability and may therefore engage in risky behaviors such as drug use and unsafe sex. Alarmingly, it has been estimated that more than 80 percent of teenagers infected with HIV use condoms inconsistently, and many of these adolescents probably do not tell their partners about their diagnosis. Furthermore, sharing a single contaminated needle can infect many users and, hence, their sexual partners.

Mental health professionals can play an important role in the prevention of HIV by providing information about safer sex, drug use, and other means of transmission. School programs focused on self-esteem building and assertiveness training have been shown to help teenagers navigate the complex interpersonal situations that can place them at risk for acquiring HIV. Mental health professionals can also work with parents, encouraging them to foster an environment of open communication in the home.

The Future Outlook

At the beginning of the 1990s, there was a bleak outlook for those living with HIV. By the start of the twenty-first century, children born with this virus were graduating high school, attending trade schools or colleges, and holding down jobs.

Along with proper medical care, attitude appears to be essential. Those who keep themselves mentally active, have a sense of purpose in their lives, and maintain a sense of humor appear able to successfully adapt to the continued uncertainties inherent in this disease. Despite the many stresses they must face, young adults with HIV need to be given the opportunity to develop and pursue their goals. In an article that appeared in the book Pediatric AIDS, Lori Wiener, Anita Septimus, and Christine Grady emphasized that if recognized and nurtured, young people with HIV have the potential to significantly contribute to society. The psychologist working with children and adolescents with HIV can play an essential role in helping these individuals overcome obstacles and achieve their goals. Thus, for patients with HIV and for the mental health professionals involved in their care, the future is looking brighter every day.

See also: BIRTH DEFECTS; PREGNANCY

Bibliography

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Lemp, George F., Susan F. Payne, Dennese Neal, Tes Temelso, and George W. Rutherford. "Survival Trends for Patients with AIDS."Journal of the American Medical Association 263 (1990):402-406.

Lipson, Michael. "What Do You Say to a Child with AIDS?" Hastings Center Report 23 (1993):6-12.

Remafedi, Gary. "The University of Minnesota Youth and AIDSProjects' Adolescent Early Intervention Program: A Model to Link HIV-Seropositive Youth with Care." Journal of Adolescent Health 23S (1998):115-121.

Stephens Richard C., Thomas E. Feucht, and Shadi W. Roman."Effects of an Intervention Program on AIDS-related Drug and Needle Behavior among Intravenous Drug Users." American Journal of Public Health 81 (1991):568-571.

Wiener, Lori S., Anita Septimus, and Christine Grady. "Psychological Support and Ethical Issues for the Child and Family." In Philip A. Pizzo and Catherine M. Wilfert eds., Pediatric AIDS: The Challenge of HIV Infection in Infants, Children, and Adolescents, 3rd edition. Baltimore: Williams and Wilkins, 1998.

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Lori Wiener

Staci Martin