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，在资源匮乏的环境下，儿童艾滋病毒的揭发率从14%到46%不等，这表明有相当数量的艾滋病毒携带者--主要是在撒哈拉以南非洲--不知道自己的艾滋病毒状况。这些儿童可能会在不了解疾病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。披露后，他们还可能改善了社会功能，获得了更多的社会支持，更积极的健康态度，更好的健康结果，以及对未来更多的希望。国际指南建议，应告知艾滋病毒阳性学龄儿童他们的血清状况；但对于照顾者来说，披露是一个复杂而困难的过程，世界卫生组织 可能担心他们的孩子太小，担心披露信息可能会造成心理伤害，或者担心孩子和家人会受到耻辱。医疗保健提供者需要培训和工具，以便在这一困难时期提供真正相关和有意义的支持。越来越多的证据支持干预措施，帮助低资源环境中的照顾者向孩子披露血清状态(他们自己和孩子的)，并得到各种资源的支持，如REPSSI的Talking Book。然而，剩下的挑战是，提供者仍然需要调整他们对这些干预措施的使用，以适应照顾者准备披露的程度，包括他们对儿童准备就绪的看法。我们认为，缺少和需要的资源是一种有效且易于使用的工具，可以帮助非专业顾问和专业顾问评估照顾者准备披露的情况和自我效能，以便定制披露支持干预措施。因此，我们的长期目标是为辅导员提供一种可使用的工具，以监测照顾者的准备情况和自我效能，以向学龄儿童披露血清状态(照顾者和/或儿童的)，以促进现有披露支持干预措施的定制，从而促进健康的披露过程。我们的具体目标是开发评估工具，并在资源不足的情况下测试其信度和效度。我们的中心假设是披露是一个过程，而且 照顾者的就绪性和自我效能感可以用有效和可靠的方式来衡量。该工具将基于行为改变的跨理论模型，该模型假设参与行为的准备可以分为几个阶段，以便为治疗干预提供信息。我们的具体目标是：(1)通过对艾滋病病毒阳性儿童、成人和青少年的护理人员以及初级保健诊所工作人员的定性调查，调查艾滋病毒披露的过程以及护理人员愿意披露的障碍和促进者；(2)开发一种工具来评估护理人员披露的意愿和自我效能 初级保健卫生工作者可以使用它来告知他们使用艾滋病毒披露干预措施。

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 14-46%, indicating a sizable number of children living with HIV-predominantly in sub-Saharan Africa-who are unaware of their HIV status. These children may begin antiretroviral therapy without learning the nature of their illness, or the purpose of th medication. Children who are not told that they have a serious health condition exhibit lower adherence to treatment and poorer health outcomes than those 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 health attitudes, better health outcomes, and more hope for the future. International guidance recommends that HIV-positive children of school-age should be informed of their serostatus; but disclosure is a complex and difficult process for caregivers, who may fear that their child is too young, that disclosing may cause psychological harm, or that child and family will be exposed to stigma. Healthcare providers need training and tools to provide genuinely relevant and meaningful support at this difficult time. A growing body of evidence supports interventions helping caregivers in low-resource settings to disclose serostatus (their own and the child's) to the child, supported by various resources, such as REPSSI's Talking Book. A remaining challenge, however, is that providers still need to tailor their use of these interventions to how ready a caregiver is to disclose, including their perceptio of child readiness. We believe that a missing and needed resource is a valid and easy to use tool to help lay and professional counselors to assess caregiver readiness and self-efficacy to disclose, in order to tailor disclosure support interventions. Our long-term goal is therefore to provide counselors with an accessible tool to monitor caregiver readiness and self-efficacy to disclose serostatus (caregiver's and/or child's) to school-age children in order to promote the tailoring of existing disclosure support interventions, thereby facilitating a healthy disclosure process. Our specific objective is to develop the assessment tool and test its reliability and validity in a low-resource setting. Our central hypothesis is that disclosure is a process and that caregiver readiness and self-efficacy can be measured in a valid and reliable way. The instrument will be based on the transtheoretical model of behavior change, which posits that readiness to engage in a behavior can be categorized into stages to inform therapeutic interventions. Our specific aims are to: (1) Investigate the process of HIV disclosure and the barriers and facilitators of caregivers' readiness to disclose through qualitative inquiry with adut caregivers of HIV-positive children, adults and adolescents living with HIV, and primary care clinic staff; (2) Develop an instrument to assess caregiver readiness and self-efficacy to disclose that can be used by primary care health workers to inform their use of HIV disclosure interventions.