Psychological response to HIV positivity in hemophilia.

OBJECTIVE

To compare the psychological and family adaptation of children and adolescents with hemophilia who were seropositive for human immunodeficiency virus type 1 (HIV-1) with an HIV-negative group of comparable age, demographic characteristics, and disease severity in a multi-site study.

DESIGN

Cross-sectional, controlled study.

SETTING

Thirty-three hemophilia treatment centers throughout the United States.

SAMPLE

Ninety-one children and adolescents with hemophilia who were seropositive for HIV and 92 children and adolescents with hemophilia who were seronegative and of comparable age, demographic characteristics, and disease severity.

RESULTS

HIV-seropositive children and adolescents reported less positive affect [(lower well being) (P < .05)], and more frequent hemophilia-related school absences were identified among HIV-infected patients (P < .005). However, the two groups demonstrated surprisingly comparable levels of psychological, social, hemophilia-related adjustment, general family relations, and hemophilia-related family adaptation, as reported by patients and parents. However, mothers of HIV-seropositive children and adolescents reported higher levels of general psychological distress (P < .008) and higher levels of distress related to hemophilia (P < .0002) than parents of HIV-negative children.

CONCLUSIONS

Seropositive children and adolescents with hemophilia demonstrate psychological resilience and levels of psychological adjustment that were comparable to seronegative counterparts. However, mothers of seropositive children were more distressed than mothers of HIV-negative children. Practitioners should ensure that stressed mothers obtain necessary psychological support.