Counseling the child and family about HIV infection is complicated by uncertainty about the diagnosis (confirmation of the diagnosis in infants who have been exposed to HIV may take several months) and the rate at which the infant’s and mother’s HIV will progress, maternal guilt and isolation, and the mother’s concerns about her own death and the subsequent care of her children (Cooper, Pelton, & LeMay, 1988). For the adolescent male, it may involve disclosure of his homosexuality to the family. Please review the general comments on counseling in other chapters. In addition, address each of the following issues that are specific to HIV infection:

• Discuss the differences between HIV infection and AIDS.
  
  
• Emphasize HIV infection as a chronic illness.
  
  
• Emphasize the positive aspects of care that can improve quality of life (e.g., PCP prophylaxis).
  
  
• Discuss the risk of HIV transmission and prevention thereof
  1. In subsequent pregnancies
  2. Among household members
  3. In the school or in the community
     
     
• Discuss the importance of prompt evaluation of intercurrent illnesses.
  
  
• Help the parents and the child identify social supports (i.e., individuals with whom they can share the diagnosis).
  
  
• Emphasize the confidentiality of the individuals’ medical records (i.e., that it will be the parents’ choice with whom to share medical information).
  
  
• Clarify the responsibilities of the primary care office and the responsibilities of the AIDS specialist.
  
  
• Discuss with the parents when and how to disclose the diagnosis to the child and whether to notify school authorities.
  
  
• Specifically, review the transmission of HIV infection and the importance of contraception with adolescents who have HIV infection.

One of the most challenging issues with regard to HIV is discussion of the diagnosis with the child or adolescent. A critical question is when to disclose the diagnosis and the terminal nature of the illness to the child because of the high level of public misunderstanding and fear regarding AIDS (Spiegel & Mayers, 1991). In the study by Grubman and co-workers (1995), disclosure of the HIV diagnosis had been made to 57% of children with HIV and 33.3% of these children’s schools. Discussion of the diagnosis with the child is best conceptualized as a process rather than a single event (Spiegel & Mayers, 1991). The Committee on Pediatric AIDS of the AAP (1999) strongly endorses disclosure that is individualized to the child’s developmental level, clinical status, and social circumstances.

The explanation of the illness must be appropriate for the level of understanding of the individual child. In general, school-age children are capable of understanding how the body works and can accept that they have a serious illness even though they are asymptomatic (Spiegel & Mayers, 1991). Older children and adolescents must be informed fully about their HIV diagnosis, and they should participate in all decisions about their care. Anxiety concerning the terminal nature of the illness may not be manifested directly. Studies (e.g., Spiegel & Mayers, 1991) have shown that children have a greater awareness of their illness than suspected; however, expressions of their anxiety are rare.


References

American Academy of Pediatrics (AAP), Committee on Pediatric AIDS. (1999). Disclosure of illness status to children and adolescents with HIV infection. Pediatrics, 103, 164–166.

Cooper, E.R., Pelton, S.I., & LeMay, M. (1988). Acquired immunodeficiency syndrome: A new population of children at risk. Pediatric Clinics of North America, 35(6), 1365–1387.

Grubman, S., Gross, E., Lerner-Weiss, N., et al. (1995). Older children and adolescents living with perinatally acquired human immunodeficiency virus infection. Pediatrics, 95(5), 657–663.

Spiegel, L., & Mayers, A. (1991). Psychosocial aspects of AIDS in children and adolescents. Pediatric Clinics of North America, 38(1), 153–167.