Battles Haven B, Wiener Lori S
National Cancer Institute, Bethesda, Maryland 20892, USA.
J Adolesc Health. 2002 Mar;30(3):161-8. doi: 10.1016/s1054-139x(01)00341-x.
To examine the psychosocial factors associated with long-term survival of pediatric human immunodeficiency virus (HIV) infection.
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.
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.
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.
研究与小儿人类免疫缺陷病毒（HIV）感染长期存活相关的社会心理因素。
对参加美国国立癌症研究所临床试验的HIV感染儿童及其照料者进行访谈，并使用儿童行为清单、儿童社会支持量表、儿童及青少年自我认知量表以及研究者设计的结构化访谈，每隔约12个月进行3次自我报告测量。还从患者病历中提取历史数据。参与者的平均年龄在第1次测量时为11.8岁，第2次测量时为14岁；原始样本中56.3%为男性，种族构成是72.2%为白人，13.9%为非裔美国人，6.9%为西班牙裔，6.9%为“其他”；38.9%的参与者通过母婴传播感染HIV，34.7%通过与血友病相关的输血感染，26.4%通过其他类型的输血感染。
皮尔逊积差相关分析显示，除了公开披露的情况外，披露与社会支持、自我能力以及问题行为减少呈正相关，在公开披露的情况下，独立样本t检验显示其与总体自我能力呈负相关。社会支持与问题行为显著负相关。对5年随访数据的卡方分析表明，18岁及以上的参与者完成学业教育的可能性低于其健康同龄人（全国标准）。失去父母的青少年一生中患抑郁症的可能性更大。
社会支持和关于诊断的开放沟通至关重要，尤其是在青少年发展和个体化的重点是关于人际关系、性活动、药物使用和未来计划的决策的年龄阶段。随着医疗治疗的进步，感染HIV的儿童更有可能存活到青春期及以后。因此，他们的社会心理需求正变得更类似于慢性病患者的需求，而不是绝症患者的需求。感染HIV儿童的家庭应认真考虑为独立生活做好准备。
