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

描述（由申请人提供）：估计有250万15岁以下的儿童感染了艾滋病毒，大多数人并不知道。在资源匮乏的环境中，儿科艾滋病毒披露率估计为14%至46%，这表明相当数量的艾滋病毒感染儿童（主要是撒哈拉以南非洲地区的儿童）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，开始抗逆转录病毒治疗，而不知道他们为什么生病，他们的疾病的性质，或药物的目的。没有被告知他们有严重健康状况的儿童比那些知道自己状况的儿童对治疗的依从性更低，健康结果更差。知道自己地位的孩子表现出更高的自尊，更少的行为问题，更少的心理困扰。披露后，他们也可能改善社会功能，更多的社会支持，对自己的健康更积极的态度，更好的健康结果，对未来更有希望。虽然国际准则建议，应告知艾滋病毒抗体阳性的学龄儿童其血清状况，但对照料者来说，告知这一情况是一个复杂而困难的过程，因为他们往往认为，自己的孩子太小，告知这一情况可能会造成心理伤害，或者孩子和家人会蒙受耻辱。医疗保健提供者可以成为护理人员的重要支持来源，因为他们正在努力做出披露的决定并开始披露过程;但是，提供者需要培训，以确保他们提供给护理人员的支持真正相关，有意义和令人鼓舞。虽然有一些证据支持旨在帮助照顾者向儿童披露其自身血清状况的干预措施，但关于帮助照顾者向资源匮乏环境中的儿童披露其血清状况的干预措施的同行审查经验证据有限。我们的长期目标是为资源匮乏环境中的卫生系统提供有效和低成本的干预模式，帮助艾滋病毒抗体阳性儿童的照料者向儿童披露其艾滋病毒状况。这项拟议研究的具体目标是设计干预措施，并证明初步可行性和可接受性的外行辅导员模式的干预交付。中心假设是 披露是一个过程，护理人员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测量;我们进一步假设，非专业卫生工作者可以在各个阶段向护理人员提供忠诚的披露支持干预 的披露过程。我们的具体目标是为未来的随机试验奠定基础：（1）调查艾滋病毒阳性儿童、艾滋病毒感染青少年的成年照顾者和初级保健诊所工作人员之间的儿科艾滋病毒披露过程和结果;（2）开发一个简单的筛查工具，供初级保健环境中的非专业卫生工作者使用，以评估护理人员的准备情况和自我评估。（3）设计和试行一项简短的、以文化为基础的儿科披露干预措施，在向儿童披露儿童艾滋病毒状况的整个过程中为照顾者提供支持。

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.