Drotar D D, Agle D P, Eckl C L, Thompson P A
Department of Psychiatry, Case Western Reserve, University School of Medicine, USA.
Pediatrics. 1995 Dec;96(6):1062-9.
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.
Cross-sectional, controlled study.
Thirty-three hemophilia treatment centers throughout the United States.
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.
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.
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.
在一项多中心研究中，比较1型人类免疫缺陷病毒（HIV-1）血清学阳性的血友病儿童和青少年与年龄、人口统计学特征及疾病严重程度相当的HIV阴性组在心理和家庭适应方面的情况。
横断面对照研究。
美国33个血友病治疗中心。
91名HIV血清学阳性的血友病儿童和青少年，以及92名年龄、人口统计学特征和疾病严重程度相当的HIV血清学阴性的血友病儿童和青少年。
HIV血清学阳性的儿童和青少年报告的积极情绪较少[（幸福感较低）（P < 0.05）]，且在HIV感染患者中发现与血友病相关的缺课情况更频繁（P < 0.005）。然而，患者及其父母报告称，两组在心理、社会、与血友病相关的适应、一般家庭关系以及与血友病相关的家庭适应方面的水平惊人地相当。但是，HIV血清学阳性的儿童和青少年的母亲报告的一般心理困扰水平较高（P < 0.008），与血友病相关的困扰水平也较高（P < 0.0002），高于HIV阴性儿童的父母。
HIV血清学阳性的血友病儿童和青少年表现出的心理适应力和心理调适水平与血清学阴性的同龄人相当。然而，血清学阳性儿童的母亲比HIV阴性儿童的母亲更苦恼。从业者应确保压力大的母亲获得必要的心理支持。
