A bioecological pediatric HIV disclosure intervention in Ghana - "SANKOFA"

说明(由申请人提供)：该项目旨在提供关于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，而且对撒哈拉以南非洲的数百万儿童及其家庭极为重要。虽然人们普遍认为，特别是在更好地获得艾滋病毒治疗的时代，对改善健康结果至关重要，但许多儿童没有被告知他们的艾滋病毒诊断。各种社会文化背景障碍和技能不足促使照顾者和卫生保健提供者始终不愿将诊断结果告知儿童。我们的初步工作表明，可以修改几个关键因素，并通过一种基于加纳传统概念“Sankofa”以及行为和生物生态系统理论的干预方法来促进披露进程。以患者为中心的干预方法使用遵守和披露专家模式，其中熟悉社区社会文化规范的指定专家经过良好培训，针对照顾者的可修改信息、动机和行为技能，以适合儿童需要的方式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，评估作为常规艾滋病毒保健不可或缺的组成部分的由专家向照顾者提供的结构化、与文化相关的披露干预对照顾者在1年随访时与通常治疗的对照条件下的儿科艾滋病毒披露率的影响，以及(2)确定基线特征(例如，照顾者的知识和动机、儿童的年龄)预测照料者在1年的随访中独立于或在存在结构化披露干预的情况下披露儿童艾滋病毒。次要目标是：(3)评估艾滋病毒儿科披露对儿童(病毒学、免疫学、心理社会和行为)和照顾者(心理社会)的服药依从性和健康结果的影响是否因暴露于结构化披露干预与不暴露于结构化披露干预而有所不同，以及(4)评估披露干预在指定披露专家、照顾者和已向其披露艾滋病毒状况的儿童中随时间的披露干预的保真度和可接受性。提供者、照顾者和儿童参与者将从加纳的三级艾滋病毒诊所登记，随机后每3个月至披露后24个月对纵向结果进行评估。 公共卫生相关性：在加纳和其他资源有限的环境中，一种与文化相关、理论和经验健全、以患者为中心的标准化披露干预措施，可以整合到常规的儿科艾滋病毒临床护理中，有可能防止传播并改善儿童及其照顾者的福利。该项目的结果还将进一步了解推动儿科艾滋病毒披露的因素和过程。公众

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. Public Health Relevance: A culturally-relevant, theoretically and empirically sound, patient-centered, standardized disclosure intervention that can be integrated into routine clinical pediatric HIV care has potential to prevent transmission and improve the welfare of children and their caregivers in Ghana and other resource-limited settings. Results from this project will also further an understanding of factors and processes driving pediatric HIV disclosure. Public