Patient-Centered Disclosure Intervention for HIV-Infected Children

针对艾滋病毒感染儿童的以患者为中心的披露干预措施

基本信息

批准号：
8389411
负责人：
Rachel Christine Vreeman
金额：
$ 49.91万
依托单位：
INDIANA UNIV-PURDUE UNIV AT INDIANAPOLIS
依托单位国家：
美国
项目类别：
财政年份：
2012
资助国家：
美国
起止时间：
2012-08-09 至 2016-05-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/8389411
关键词：
AIDS/HIV problem Acute Adherence Adult Africa Africa South of the Sahara Age Behavioral Caring Child Child Care Child Support Childhood Chronic Care Chronic Disease Clinic Clinical Clinical Management Cognitive Communication Comorbidity Complex Control Groups Disclosure Disease Management Effectiveness Elements Emotional Face Family Focus Groups Fright Goals HIV HIV Infections Health Personnel Health Services Accessibility High Prevalence Highly Active Antiretroviral Therapy Infection Intervention Interview Kenya Language Life Measurement Medical Modeling Outcome Parents Patient Participation Patients Pharmaceutical Preparations Phase Physical assessment Prevalence Probability Process Professional counselor Protocols documentation Qualitative Methods Randomized Controlled Trials Research Research Infrastructure Resources Review Literature Social Impacts Social isolation Stigmata Support Groups Time Training Training Programs Treatment Failure Videotape Work abstracting age group antiretroviral therapy arm base care systems clinical care depressive symptoms efficacy testing experience follow-up group intervention improved medication compliance patient oriented pediatric human immunodeficiency virus prevent psychologic psychological distress randomized trial routine care social social stigma standard care standard of care systematic review therapy adherence treatment as usual trial comparing validation studies viral resistance

项目摘要

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.

抽象的在大多数受艾滋病毒感染儿童生活的资源有限的环境中，既不是最有效的策略告知儿童的艾滋病毒状况，也没有透露披露的影响。这个团队的长期目标提供证据以改善资源有限的艾滋病毒感染儿童的慢性病管理设置。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使用将干预措施与常规护理进行比较的聚类随机试验，为艾滋病毒感染的肯尼亚儿童。主要终点将是儿童披露的可能性，并具有依从性的次要终点，临床结果，心理困扰和社会成果。这项工作将在长期存在的 Us-Kenya Partnership，提供医疗保健（AMPATH）的学术模型，目前关心在肯尼亚的25个诊所中，近12万名成人和儿科感染了HIV的患者。我们将利用优秀这种学术伙伴关系的基础设施，以提供对物理的首次全面评估披露对艾滋病毒感染的儿童的心理和社会影响。我们将评估通过追求这些特定目的，强化披露干预的影响：目标1：扩展和修改肯尼亚使用的现有儿科HIV披露干预措施包括以患者为中心的成分；目标2：进行簇随机试验，以比较文化适应的临床实施的影响，小儿披露干预措施以及医学，心理和社会的披露率与暴露于标准的儿童相比临床护理。通常的护理控制部门将对所有临床医生进行披露培训，披露图表材料和现有的协议，以在10年内实施患者的披露。披露干预措施将由以患者为中心的材料组成，以指导披露，包括录像叙事；披露顾问；公开后的儿童抚养费小组；以及通常的护理资源。第一阶段将持续6个月，专注于通过密集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；选择叙事组成部分；和培训专门的披露顾问。第二阶段由一个随机，对照试验进行的集群组成八个儿科艾滋病毒诊所每6个月每6个月进行全面评估，共2年。我们假设干预组在给定年龄段将具有更高的披露率，并且有所改善艺术依从性，抑郁症状和情绪困难的较少，经验丰富与对照组相比，污名。