Developmental and Social Impact on the Child

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 SYNDROMEquently 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 is ACQUIRED IMMUNE DEFICIENCY SYNDROME 5Beverly Alindi, a seven year old, HIV-infected patient from Kenya, appears much smaller and younger than her actual age due to complications from the virus. (AP Wide World Photos) that many young adults with AIDS almost certainly ac- quired their infection as teenagers. Throughout ado- lescence, teenagers often feel a sense of invulnerability and may therefore engage in risky be- haviors such as drug use and unsafe sex. Alarmingly, it has been estimated that more than 80 percent of teenagers infected with HIV use condoms inconsis- tently, and many of these adolescents probably do not tell their partners about their diagnosis. Further- more, sharing a single contaminated needle can in- fect many users and, hence, their sexual partners. Mental health professionals can play an impor- tant role in the prevention of HIV by providing infor- mation 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 inter- personal situations that can place them at risk for ac- quiring HIV. Mental health professionals can also work with parents, encouraging them to foster an en- vironment of open communication in the home