Patient-Centered Disclosure Intervention for HIV-Infected Children

摘要 在大多数感染艾滋病毒的儿童生活的资源有限的情况下，无论是最有效的战略还是 告知儿童他们的艾滋病毒状况，也不能很好地理解披露的影响。这支球队的长期目标是 就是为改善资源有限的儿童HIV感染慢性病管理提供依据 设置。这项研究的目的是评估以患者为中心的干预指导披露的效果 对感染艾滋病毒的肯尼亚儿童，采用整群随机试验，将干预与常规护理进行比较。 主要终点将是在儿童中披露的概率，次要终点是坚持， 临床结果、心理苦恼和社会结果。这项工作将在长期的时间内完成 美国-肯尼亚伙伴关系，提供获得医疗保健的学术模式(AMPATH)，目前 为肯尼亚25家诊所的近12万名成人和儿童艾滋病毒感染患者提供服务。我们将利用优秀的 这一学术伙伴关系的基础设施提供了第一个全面的物理评估， 披露对东非艾滋病毒感染儿童的心理和社会影响。我们将评估 通过追求这些具体目标强化披露干预的影响：目标1：扩大和修改 肯尼亚使用的现有儿科艾滋病毒披露干预措施包括以患者为中心的内容；目标2： 进行整群随机试验，以比较文化适应的临床实施的影响， 儿科披露对披露流行率的干预以及对医疗、心理和社会的影响 10-15岁感染艾滋病毒的肯尼亚儿童与接触标准病毒的儿童的结果比较 临床护理。通常的护理控制部门将对所有临床医生进行披露培训，披露图表 材料，以及一项在10年内对患者实施披露的现有协议。这一披露 干预将包括以患者为中心的材料，以指导披露，包括录像叙述； 信息披露顾问；信息披露后的儿童支持团体；以及通常的护理资源。第一阶段，即 将持续6个月，重点是通过重症患者对干预材料的文化适应 参与，包括焦点小组和认知访谈；选择叙述部分；以及培训 专职的信息披露顾问。第二阶段包括在#年进行的整群随机对照试验 8个儿童艾滋病毒诊所，每6个月对患者进行全面评估，为期2年。我们 假设干预组在给定的年龄会有更高的信息披露比率，以及改善 坚持ART，较少的抑郁症状和情绪困难，经验没有增加 耻辱感与对照组比较。

Abstract In the resource-limited settings where most HIV-infected children live, neither the most effective strategies to inform children of their HIV status, nor the impact of disclosure is well understood. This team's long-term goal is to provide evidence to improve the chronic disease management of HIV-infected children in resource-limited settings. The purpose of this study is to assess the effect of a patient-centered intervention guiding disclosure to HIV-infected Kenyan children, using a cluster randomized trial comparing the intervention to routine care. The primary endpoint will be probability of disclosure among children, with secondary endpoints of adherence, clinical outcomes, psychological distress and social outcomes. This work will be done within a long-standing US-Kenya partnership, the Academic Model Providing Access to Healthcare (AMPATH), which currently cares for almost 120,000 adult and pediatric HIV-infected patients in 25 clinics in Kenya. We will utilize the excellent infrastructure of this academic partnership to provide the first comprehensive assessment of the physical, psychological, and social impact of disclosure for HIV-infected children in East Africa. We will evaluate the impact of an intensive disclosure intervention by pursuing these specific aims: Aim 1: Expand and modify an existing pediatric HIV disclosure intervention used in Kenya to include patient-centered components; Aim 2: Perform a cluster randomized trial to compare the impact of clinic implementation of the culturally adapted, pediatric disclosure intervention on the prevalence of disclosure and on the medical, psychological, and social outcomes for HIV-infected Kenyan children ages 10-15 years compared to children exposed to standard clinical care. The usual care control arm will have disclosure training for all clinicians, disclosure chart materials, and an existing protocol to implement disclosure for patients over 10 years. The disclosure intervention will consist of patient-centered materials to guide disclosure, including videotaped narratives; disclosure counselors; post-disclosure child support groups; and the usual care resources. Phase One, which will last 6 months, focuses on cultural adaptation of the intervention materials through intensive patient participation, including focus groups and cognitive interviewing; selecting narrative components; and training dedicated disclosure counselors. Phase Two consists of a cluster randomized, controlled trial conducted in eight pediatric HIV clinics with comprehensive patient assessments every 6 months for 2 years. We hypothesize that the intervention group will have higher rates of disclosure at a given age, as well as improved ART adherence, fewer depression symptoms and emotional difficulties, and no increases in experienced stigma compared to the control group.