Hemophilia Growth and Development Study: caregiver report of youth and family adjustment to HIV disease and immunologic compromise.
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.
Bordeaux
Janice D
JD
George R. Brown School of Engineering, Rice University, Houston, Texas, USA. jbordeau@rice.edu
Loveland
Katherine A
KA
Lachar
David
D
Stehbens
James
J
Bell
Terece S
TS
Nichols
Sharon
S
Amodei
Nancy
N
Adkins
Kristin Brelsford
KB
D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D017028:Caregivers; D002648:Child; D002657:Child Development; D005190:Family / Q000523:psychology*; D005192:Family Health; D006679:HIV Seropositivity / Q000276:immunology* / Q000523:psychology*; D006467:Hemophilia A / Q000276:immunology* / Q000523:psychology*; D006801:Humans; D016867:Immunocompromised Host; D008297:Male; D011795:Surveys and Questionnaires