Purpose: To examine the psychosocial factors associated with long-term survival of pediatric human immunodeficiency virus (HIV) infection.
Methods: Children infected with HIV enrolled in clinical trials at the National Cancer Institute and their caregivers were interviewed and completed self-report measures 3 times, approximately 12 months apart, using the Child Behavior Checklist, Social Support Scale for Children, Self-Perception Profile for Children and Adolescents, and a structured interview designed by the investigators. Historical data were also extracted from patient medical charts. Average age of participants was 11.8 years at time 1 and 14 years at time 2; 56.3% of the original sample were male, racial composition was 72.2% white, 13.9% African-American, 6.9% Hispanic, and 6.9% "other"; 38.9% of participants contracted HIV perinatally, 34.7% through a hemophilia-related transfusion, and 26.4% through another type of transfusion.
Results: Pearson product-moment correlations revealed that disclosure was found to be positively related to social support, self-competence, and decreased problem behavior, except in the case of public disclosure, in which an independent-sample Student's t-test revealed that it was negatively associated with global self-competence. Social support was significantly negatively correlated with problem behavior. Chi-square analyses of the 5-year follow-up data indicated that participants aged 18 years and older were less likely to complete their academic education than their healthy peers (national norms). Adolescents who lost a parent were more likely to have suffered from depression during their lifetime.
Conclusions: Social support and open communication about the diagnosis are essential, particularly at an age at which decisions about relationships, sexual activity, drug use, and plans for the future are the focus of adolescent development and individuation. With advances in medical treatment, HIV-infected children are more likely to survive into adolescence and beyond. Accordingly, their psychosocial needs are changing to more closely resemble the needs of the chronically ill individual, rather than the terminally ill. Families of HIV-infected children should seriously consider preparation for independent living.