A bioecological pediatric HIV disclosure intervention in Ghana -

描述（由申请人提供）：该项目旨在提供有关结构化披露干预措施的信息，该干预措施可纳入加纳和其他资源有限环境中的常规护理，以改善感染艾滋病毒的儿童及其照料者的福利。这一调查领域尚未得到充分研究，对撒哈拉以南非洲数百万儿童及其家庭具有高度重要性。虽然人们普遍认为这对改善健康结果至关重要，特别是在更好地获得艾滋病毒治疗的时代，但许多儿童并不知道他们的艾滋病毒诊断结果。各种社会文化背景障碍和缺乏技能驱使护理人员和卫生保健提供者持续不愿告知儿童诊断。我们的初步工作表明，基于加纳传统概念“SANKOFA”以及行为和生物生态系统理论的干预方法可以修改几个关键因素，并促进披露过程。以患者为中心的干预方法使用依从性和披露专家模型，其中指定的专家熟悉社区的社会文化规范，训练有素，针对护理人员的可修改信息、动机和行为技能，以促进他们以适合儿童需要的方式参与披露过程（即披露前、披露和披露后阶段）。主要目标是：(1)在一项随机试验中，作为常规艾滋病毒医疗保健的一个组成部分，专家向护理人员提供结构化的、与文化相关的披露干预，以评估与常规治疗（对照组）相比，1年随访时护理人员对儿科艾滋病毒的披露率的影响；(2)确定基线特征（例如，护理人员知识和动机）；在1年随访中，不依赖于结构化披露干预的情况下，照料者对儿童艾滋病毒的披露具有预测性。次要目标是：(3)评估艾滋病毒儿科信息披露对儿童药物依从性和健康结果（病毒学、免疫学、社会心理和行为）以及照顾者（社会心理）的影响是否因暴露与未暴露于结构化披露干预而有所不同；(4)评估指定的披露专家、照顾者和已披露艾滋病毒状况的儿童对披露干预的忠实度和可接受性。提供者、护理人员和儿童参与者将从加纳的三级艾滋病毒诊所招募，随机分组后每3个月至24个月对纵向结果进行评估。

DESCRIPTION (provided by applicant): The project aims to provide information on a structured disclosure intervention that can be integrated into usual care in Ghana and other resource-limited settings to improve the welfare of HIV-infected children and their caregivers. This area of investigation is profoundly understudied and of high importance to millions of children and their families in sub-Saharan Africa. While widely recognized as vital to better health outcomes, especially in the era of better access to HIV treatment, many children are not informed of their HIV diagnosis. A variety of sociocultural contextual barriers and deficient skill drive the persistent reluctance of caregivers and health care providers to inform children of the diagnosis. Our preliminary work shows that several key factors can be modified and the process of disclosure promoted with an intervention approach that is grounded in a traditional Ghanaian concept, "SANKOFA", and behavioral and bioecological systems theory. The patient-centered intervention approach uses an Adherence and Disclosure specialist model where a designated specialist familiar with the socio-cultural norms of the community is well trained to target modifiable information, motivation and behavioral skills of caregivers to facilitate their engagement in the process of disclosure (i.e., pre-disclosure, disclosure, and post-disclosure phases) in a manner suitable to the needs of the child. The primary aims are: (1) To evaluate the effect of a structured, culturally-relevant disclosure intervention to caregivers delivered by specialist as an integral component of routine HIV healthcare on the rate of caregiver disclosure of pediatric HIV at 1 year follow-up compared to treatment as usual, control condition, in a randomized trial and (2) To identify baseline characteristics (e.g., caregiver knowledge & motivation, child's age) predictive of caregiver disclosure of pediatric HIV independent of and in the presence of the structured disclosure intervention at 1 year follow-up. Secondary aims are: (3) To assess whether the effect of HIV pediatric disclosure on medication adherence and health outcomes of children (virologic, immunologic, psychosocial, and behavioral) and the caregiver (psychosocial) varies by exposure vs. non-exposure to the structured disclosure intervention and (4) To assess the fidelity and acceptability of the disclosure intervention over time among the clinic personnel designated disclosure specialist, caregiver, and children to whom HIV status has been disclosed. Provider, caregiver and child participants will be enrolled from tertiary HIV clinics in Ghana with longitudinal outcomes evaluated every 3 months post-randomization to 24 months post disclosure.