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Journal of Pediatric Psychology, Vol. 28, No. 3, 2003, pp. 175-183
© 2003 Society of Pediatric Psychology

Hemophilia Growth and Development Study: Caregiver Report of Youth and Family Adjustment to HIV Disease and Immunologic Compromise

Janice D. Bordeaux, PhD1, Katherine A. Loveland, PhD2, David Lachar, PhD2, James Stehbens, PhD3, Terece S. Bell, PhD4, Sharon Nichols, PhD5, Nancy Amodei, PhD6, Kristin Brelsford Adkins, BS7 and the Hemophilia Growth and Development Study

1 Rice University, 2 University of Texas Medical School, Houston, 3 University of Iowa, College of Medicine, 4 Children's Hospital of Los Angeles, 5 University of California—San Diego Medical Center, 6 University of Texas Health Science Center, San Antonio, 7 University of Colorado, Boulder

All correspondence should be sent to Janice D. Bordeaux, Office of the Dean, George R. Brown School of Engineering, MS-364, Rice University, 6100 S. Main St., Houston, Texas. E-mail: jbordeau{at}rice.edu. Anne Kazak, PhD, ABPP, former Editor, served as accepting editor on this article.

Objective To assess differences in caregiver report of youth and family psychosocial adjustment associated with HIV infection and greater immune compromise in youths with hemophilia. Methods Caregivers of 162 boys with hemophilia 8 to 20 years old completed three youth and family questionnaires (Personality Inventory for Children, Revised [PIC-R]; Questionnaire on Resources and Stress [QRS]; Family Environment Scale). Results Caregivers of HIV positive (HIV+) youths reported greater health concerns, social withdrawal (PIC-R), physical and adaptive limitations associated with illness (QRS) in their sons, and more pessimism about their sons' future and negative attitudes about parenting (QRS). Caregivers of HIV+ youths with greater immune compromise reported greater concerns about their sons' health and greater pessimism about their futures, as well as lower levels of family integration and more limited family opportunities. Conclusions Results suggest caregivers perceive psychosocial problems in HIV+ youths with hemophilia and their families; some problems are specifically associated with greater immune compromise.

Key words: hemophilia; HIV; psychosocial; youth; family stress; immune compromise.


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