Special Considerations: Pediatric to Adolescent Care Transitions
Disclosure of HIV Infection
The thought of disclosing to a child that he or she has a serious illness often provokes extreme anxiety in parents or caregivers. Many believe that children or adolescents who are told that they are HIV infected will become depressed and lose interest in life.10 As a result, a veil of secrecy around a parent's or a child's HIV infection is common. Unfortunately, this secrecy often creates agitation, anxiety, depression, and behavioral problems, as most adolescents are very perceptive and pick up clues that something is wrong even when no one in the family acknowledges the cause of stress.
Young people have a right to know if they are HIV infected. Providers should assess a young patient's ability to integrate and interpret information about HIV infection. If this information is appropriately presented and the patient has access to psychosocial support, most young people can cope with the news that they are HIV infected. Furthermore, many clinicians have found that, when children and adolescents understand what is happening to their bodies, they are more likely to participate in their treatment.
HIV disclosure to youth should occur sooner rather than later. But, in some cultures, such as among Blacks/African Americans, it is considered inappropriate to discuss "adult" topics with children. Some families may feel that a child or adolescent is too young to "handle" the news that they have a serious, chronic disease. Some families may even fear that their child may give up on living if they are told of their diagnosis. Disease-related stigma and parental guilt are significant issues to address when preparing parents for disclosure counseling. Providers should be aware that reluctance to inform children that they are HIV infected is often related to fears among parents or caregivers that the child may:
- Blame the mother for being the source of infection
- Not be cognitively prepared to understand the information
- Tell others outside the immediate family
- Gerson AC, Joyner M, Fosarelli P, et al. Disclosure of HIV diagnosis to children: when, where, why, and how. J Pediatr Health Care. 2001 Jul-Aug;15(4):161-7.