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，该干预措施可以纳入加纳和其他资源有限的环境中的日常护理，以改善感染艾滋病毒的儿童及其照顾者的福利。这一调查领域的研究严重不足，对撒哈拉以南非洲数百万儿童及其家庭非常重要。虽然人们普遍认为这对改善健康结果至关重要，特别是在更容易获得艾滋病毒治疗的时代，但许多儿童没有被告知他们的艾滋病毒诊断结果。各种社会文化背景的障碍和缺乏技能的驱动器的照顾者和卫生保健提供者的持续不愿告知儿童的诊断。我们的初步工作表明，几个关键因素可以修改和披露的过程中，促进与干预的方法，是在加纳的传统概念，“SANKOFA”，以及行为和生物生态系统理论的基础。以患者为中心的干预方法使用了遵守和披露专家模型，其中熟悉社区社会文化规范的指定专家接受了良好的培训，以针对护理人员的可修改信息，动机和行为技能，以促进他们参与披露过程（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，与常规治疗、对照条件相比，评估由专科医生向护理人员提供的结构化、文化相关的披露干预作为常规HIV医疗保健的组成部分对1年随访时护理人员披露儿科HIV的影响;（2）确定基线特征（例如，护理人员的知识和动机，儿童的年龄）预测的护理人员披露的儿科艾滋病毒的独立和存在的结构化披露干预在1年的随访。次要目标是：（3）评估艾滋病儿科信息披露对儿童服药依从性和健康结局的影响（病毒学、免疫学、社会心理学和行为学）和护理人员（心理社会）因暴露于与不暴露于结构化披露干预而不同，以及（4）评估在指定的披露专家、护理人员、以及已被告知艾滋病毒状况的儿童。提供者、护理者和儿童参与者将从加纳的三级HIV诊所入组，随机化后每3个月至披露后24个月对纵向结局进行评价。

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.