CHICAGO - The American Academy of Pediatrics (AAP) recently released a statement that strongly encourages parents who have school-age children and teens with HIV infection to tell those children the truth about their illness.
|The AAP recommendations concerning disclosure of HIV include:|
Many children with HIV and AIDS are surviving to middle childhood and adolescence, according to the policy. By the end of 1997, in the United States there were more than 8,000 reported cases of children younger than 13 with AIDS or who were HIV positive, and more than 3,000 teens with AIDS or who were HIV positive. Yet, many of them do not know they have HIV.
There are many reasons why parents do not want to disclose a child's status. Parents may think they are protecting their children and themselves by keeping the illness a secret. Parents also fear that disclosure may subject the child to stigmatization, discrimination or ostracism. And often, they are dealing with their own illness and sense of guilt about the child's infection.
However, studies suggest that children who know their HIV status have higher self-esteem than children who are sick and do not know why. Additional studies indicate that parents who have disclosed the status to their children experience less depression than those who do not.
HIV/AIDS is becoming recognized and treated as a chronic illness, and guidelines are already in place to advice physicians and parents about disclosing a chronic illness to a child. "Disclosure of HIV infection status to children and adolescents should take into consideration their age, psychosocial maturity, the complexity of family dynamics and the clinical context," the statement said. The statement was written by the AAP Committee on Pediatric AIDS and appeared in the January issue of Pediatrics.
For other chronic illnesses, young children are given simple explanations about their illness with information about what they need to know to take care of themselves. "The exact prognosis of the disease are less important in early discussions with young children," the recommendations said.
As the child matures, the explanation should become more detailed about the nature and consequences of the disease. These children should be encouraged to participate in their own medical care, the committee said.
Although children with many chronic diseases, such as cancer, are better able to cope with their illness, parents and some physicians are reluctant to tell a child his or her HIV status. According to data taken from several centers that treat HIV, between 25% to 90% of school-age children with HIV/AIDS have not been given their status, the statement said.
If a parent chooses to withhold this information from the child, the committee said that a physician has a responsibility to "make an independent assessment of the child's readiness for disclosure." The committee recommended that pediatricians act as Advocates for the children to the parents. The committee added that physicians treating teens have an ethical obligation to provide counseling about the disease. "Adolescents need to be informed about their illness to assist in their own care to reduce the risk of transmitting the infection to others though unprotected sex or behaviors associated with illicit drug use, the committee wrote.
The policy also states that pediatricians need to inform parents that if older children question them about their HIV infection status, they will answer direct questions truthfully.
For more information:
- AAP Committee on Pediatric AIDS. Disclosure of illness status to children and adolescents with HIV infection. Pediatrics. 1999;103:164-65.
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