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与向感染艾滋病毒/艾滋病儿童披露诊断相关的因素。

Factors associated with disclosure of diagnosis to children with HIV/AIDS.

作者信息

Wiener L S, Battles H B, Heilman N, Sigelman C K, Pizzo P A

机构信息

Pediatric Branch, National Cancer Institute, Bethesda, Maryland, USA.

出版信息

Pediatr AIDS HIV Infect. 1996 Oct;7(5):310-24.

Abstract

Disclosure of the diagnosis of human immunodeficiency virus (HIV) infection or acquired immunodeficiency syndrome (AIDS) to a child is a controversial and emotionally laden issue. To understand the factors that affect the process of disclosure and its consequences, we studied 99 parent-child dyads recruited from patients being treated at the National Cancer Institute (NCI). Parents and HIV-infected children were interviewed and administered several standardized measures. Parental depression, family environment, social support satisfaction, socioeconomic status, child and parent gender, child's age, parental HIV serostatus, and disease severity were used to predict disclosure status. Results indicate that the majority of caregivers do disclose the diagnosis to the child, usually with no ill effects, and that age is the most significant predictor of whether or not a child has been told. The Centers for Disease Control and Prevention currently estimate that there are over 6611 children with AIDS (under age 13), and 2184 adolescents with AIDS (ages 13-19) in America. As an increasing number of children who are born infected with HIV live to older ages, the question of when and how to talk with them about their illness becomes more crucial. In addition to the growing number of children infected with HIV, there are many thousands of children profoundly affected by the impact of this disease on a close family member--a mother, father, sibling, or other relative in the kinship network. Yet, the initial reaction most adults have upon learning of their own, or of a family member's, HIV diagnosis is that the diagnosis must be kept a closely guarded secret. One reason frequently cited by parents and family members is their fear that the stigma of AIDS will have a negative impact on their children and their families. Disclosure of an HIV diagnosis to a child is a controversial and emotionally laden issue in the pediatric health-care community as well. However, no systematic research has studied the issues that surround disclosure of an HIV diagnosis to the patient and the factors that predict disclosure.

摘要

向儿童披露人类免疫缺陷病毒(HIV)感染或获得性免疫缺陷综合征(AIDS)的诊断是一个存在争议且充满情感负担的问题。为了了解影响披露过程及其后果的因素,我们对从美国国立癌症研究所(NCI)接受治疗的患者中招募的99对亲子进行了研究。对父母和感染HIV的儿童进行了访谈,并实施了几项标准化测量。使用父母的抑郁程度、家庭环境、社会支持满意度、社会经济地位、儿童和父母的性别、儿童年龄、父母的HIV血清学状态以及疾病严重程度来预测披露状态。结果表明,大多数照顾者确实会向孩子披露诊断情况,通常没有不良影响,而且年龄是孩子是否被告知的最显著预测因素。美国疾病控制与预防中心目前估计,美国有超过6611名患有艾滋病的儿童(13岁以下)以及2184名患有艾滋病的青少年(13 - 19岁)。随着越来越多感染HIV的儿童活到更大年龄,何时以及如何与他们谈论病情的问题变得更加关键。除了感染HIV的儿童数量不断增加外,还有成千上万的儿童受到这种疾病对亲密家庭成员(母亲、父亲、兄弟姐妹或亲属网络中的其他亲属)影响的深刻影响。然而,大多数成年人在得知自己或家庭成员的HIV诊断时的最初反应是,必须将诊断作为高度机密保守起来。父母和家庭成员经常提到的一个原因是,他们担心艾滋病的污名会对孩子及其家庭产生负面影响。在儿科医疗保健领域,向儿童披露HIV诊断也是一个存在争议且充满情感负担的问题。然而,尚未有系统研究探讨围绕向患者披露HIV诊断的问题以及预测披露的因素。

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