Developing a measure of caregiver readiness to disclose HIV serostatus: a tool to

描述(申请人提供)：据估计，有250万15岁以下的儿童携带艾滋病毒，但大多数人并不知道。据估计，在资源匮乏的情况下，儿童艾滋病毒的披露率在14%至46%之间，这表明相当数量的艾滋病毒携带者--主要是在撒哈拉以南非洲--并不知道自己的艾滋病毒状况。儿童和青少年经常检测呈阳性，在不了解他们患病的原因、疾病的性质或药物目的的情况下开始抗逆转录病毒治疗。没有被告知自己有严重健康状况的儿童，与那些知道自己状况的儿童相比，他们对治疗的依从性较低，健康结果也较差。了解自己状况的孩子表现出更高的自尊，较少的行为问题，以及较少的心理困扰。在被披露后，他们也可能改善了社会功能，获得了更多的社会支持，对自己的健康持更积极的态度，更好的健康结果，以及对未来更多的希望。虽然国际指导建议应将艾滋病毒阳性学龄儿童的血清状况告知他们，但披露信息对照料者来说是一个复杂而困难的过程，他们往往认为自己的孩子太小，披露信息可能会造成心理伤害，或者儿童和家庭将面临耻辱。医疗保健提供者可以成为照顾者的重要支持来源，因为他们正在为披露和开始披露过程的决定而苦苦挣扎；然而，提供者需要培训，以确保他们向照顾者提供的支持真正相关、有意义和鼓舞人心。虽然有一些证据支持旨在帮助照料者向儿童披露自己的血清状况的干预措施，但关于帮助照顾者在资源匮乏的情况下向儿童披露儿童的血清状况的干预措施，同行评议的经验证据有限。我们的长期目标是为低资源环境下的卫生系统提供有效和低成本的干预模式，帮助艾滋病毒阳性儿童的照顾者向儿童披露儿童的艾滋病毒状况。这项拟议研究的具体目标是设计干预措施，并证明提供干预服务的非专业辅导员模式的初步可行性和可接受性。中心假设是 披露是一个过程，照顾者参与这一过程的准备和自我效能可以以有效和可靠的方式进行衡量；我们进一步假设，非专业卫生工作者可以在不同阶段向照顾者提供忠诚的披露支持干预 披露过程的细节。我们的具体目标旨在为未来的随机试验奠定基础：(1)调查艾滋病毒阳性儿童、青少年和初级保健诊所工作人员的成年照料者披露艾滋病毒的过程和结果；(2)开发一种简短的筛查工具，可供初级保健环境中的业余卫生工作者使用，以评估照顾者向儿童披露儿童艾滋病毒状况的准备情况和自我效能；以及(3)设计和试点简短的、基于文化的儿科披露干预措施，以在向儿童披露儿童艾滋病毒状况的整个过程中支持照顾者。

DESCRIPTION (provided by applicant): An estimated 2.5 million children younger than 15 years are living with HIV, and most do not know it. Estimates of pediatric HIV disclosure rates in low-resource settings range from 14 to 46 percent, indicating that a sizable number of children living with HIV-predominantly in sub-Saharan Africa-are not aware of their HIV status. Children and adolescents often test positive and begin antiretroviral therapy without learning why they are sick, the nature of their illness, or the purpose of the medication. Children who are not told that they have a serious health condition exhibit lower adherence to treatment and poorer health outcomes than those who are aware of their status. Children who know their status exhibit higher self-esteem, fewer behavior problems, and less psychological distress. After disclosure, they may also have improved social functioning, more social support, more positive attitudes about their health, better health outcomes, and more hope for the future. While international guidance recommends that HIV-positive school-age children should be informed of their serostatus, disclosure is a complex and difficult process for caregivers, who often believe that their child is too young, that disclosing may cause psychological harm, or that the child and family will be exposed to stigma. Healthcare providers can be an important source of support for caregivers as they struggle with the decision to disclose and begin the process of disclosure; however, providers need training to make sure that the support that they provide to caregivers is genuinely relevant, meaningful, and encouraging. Although there is some evidence supporting interventions designed to help caregivers disclose their own serostatus to children, there is limited peer-reviewed empirical evidence on interventions to help caregivers disclose a child's serostatus to the child in low-resource settings. Our long-term goal is to provide health systems in low-resource settings with an efficacious and low-cost intervention model for helping caregivers of HIV-positive children to disclose the child's HIV status to the child. The specific objective of this proposed study is to design the intervention and to demonstrate initial feasibiliy and acceptability of a lay counselor model of intervention delivery. The central hypothesis is that disclosure is a process and that a caregiver's readiness and self-efficacy to engage in this process can be measured in a valid and reliable way; we further hypothesize that lay health workers can deliver a disclosure support intervention with fidelity to caregivers at various stages of the disclosure process. Our specific aims are designed to lay the groundwork for a future randomized trial: (1) Investigate the process and outcomes of pediatric HIV disclosure among adult caregivers of HIV-positive children, adolescents living with HIV, and primary care clinic staff; (2) Develop a brief screening tool that can be used by lay health workers in primary care settings to assess a caregiver's readiness and self-efficacy to disclose a child's HIV status to child; and (3) Design and pilot a brief, culturally-anchored, pediatric disclosure intervention to support caregivers throughout the process of disclosing a child's HIV status to the child.