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环境中， 没有向儿童告知其艾滋病毒状况，也没有充分了解披露的影响。这个团队的长期目标 为改善资源有限地区艾滋病毒感染儿童的慢性病管理提供证据 设置.本研究的目的是评估以病人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进行了一项随机分组试验，将干预措施与常规护理进行比较。 主要终点是儿童中的披露概率，次要终点是依从性， 临床结果、心理困扰和社会结果。这项工作将在长期的 美国-肯尼亚伙伴关系，提供医疗保健的学术模式（AMPATH），目前关心 为肯尼亚25家诊所的近12万名成人和儿童艾滋病毒感染者提供服务。我们将利用优秀的 这种学术合作伙伴关系的基础设施提供了第一次对物理、 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 在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组成部分;目标2： 进行一项群集随机试验，以比较文化适应性， 儿科披露干预对披露的患病率和对医疗，心理和社会 肯尼亚10-15岁感染艾滋病毒儿童与接触标准 临床护理常规护理控制组将对所有临床医生进行披露培训，披露图表 材料，以及现有的协议，以实施披露的病人超过10年。本公开 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小组;以及通常的护理资源。第一阶段， 将持续6个月，重点是通过密集的病人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;培训 专门的信息披露顾问第二阶段是一项随机分组对照试验， 8个儿科艾滋病诊所，每6个月进行一次全面的患者评估，为期2年。我们 假设干预组在给定年龄段的披露率更高， 坚持抗逆转录病毒治疗，抑郁症状和情绪困难减少， 与对照组相比。

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.