Autism Caregiver Coaching in Africa

摘要 在全球范围内，越来越需要实施基于社区的服务，以支持质量的提高 自闭症患者的生活。早期自闭症干预是至关重要的，因为它可以显著改善儿童和 家庭成果，但在全世界范围内都存在执行差距。这些差距在非洲最为明显，到2050年， 即使非洲缺乏专家，任务转移也会导致早期自闭症 对非专家的干预将是一项关键的执行战略。自然主义发展性行为 干预(NDBI)是一类早期自闭症干预方法，可以通过以下方式有效地提供 照顾者。通过杜克大学和开普敦大学的合作，我们的团队奠定了 为自闭症儿童提供创新和可扩展的辅导干预的基础工作。我们系统地 调整护理员教练NDBI以适应南非环境，其中教练由以下人员有效提供 教育署聘用的非专业幼儿发展从业员。在 建议的研究我们将通过实施类型1混合有效性实施来建立我们的基础工作 在南非现有的护理系统内，由非专科医生提供的教练干预的试验。 我们的目标是通过开展研究，在非洲实施一种可行的、可扩展的自闭症早期干预模式 在以社区为基础的环境中，有文化和语言上的不同参与者，这包括不同的 利益相关者的观点，并纳入任务转移。在拟议的研究中，我们将在现有的基础上 与家庭、从业者和政策制定者的关系，将这些关系正规化，并包括其他 关键利益相关者团体，如南非自闭症自我倡导者通过社区-学术 伙伴关系，这是EPIS实施框架中的一个关键桥梁因素。拟议中的项目主要有三个方面 目标。首先，评估非专家提供的NDBI护理员培训在现实世界中的有效性 改善照料者与儿童的互动模式和儿童发展结果，并评估成本- 这种方法的有效性。第二，确定实施决定因素，为扩大规模提供信息。第三，到 扩大非洲自闭症研究能力，增强可扩展性。该项目还提供了一个独特的机会 研究自闭症相关行为和现象学中的变异性。因此我们将评估在多大程度上 对干预的反应受到照顾者和维度儿童特征的调节。此外，使用 创新数字评估方法，改变自闭症相关维度量化测量 我们将检查他们的行为。最后，维度自闭症相关行为的跨文化差异将是 通过与美国研究中收集的现有定量表型数据进行比较进行评估。这项研究恰逢其时 并具有创新性，将有助于扩大非洲自闭症早期干预的规模。评估可扩展的 在南非这样面临重大背景挑战的环境中进行干预，增加了 对于世界上许多面临类似挑战的区域，研究结果的生态有效性和相关性。

ABSTRACT Globally there is a growing need to implement community-based services that support improvements in quality of life of autistic people. Early autism intervention is critical because it can significantly improve both child and family outcomes, but implementation gaps exist worldwide. These gaps are starkest in Africa, where by 2050, iven the lack of specialists in Africa, task shifting early autism intervention to non-specialists will be a key implementation strategy. Naturalistic Developmental Behavioral Interventions (NDBI), are a class of early autism intervention approaches, that can be effectively delivered by caregivers. Through a partnership between Duke University and the University of Cape Town, our team laid the groundwork for an innovative and scalable coaching intervention for young autistic children . We systematically adapted a caregiver coaching NDBI for the South African context in which coaching is effectively delivered by non-specialist Early Childhood Development practitioners employed by the Education Department. In the proposed study we will build on our foundational work by conducting a type 1 hybrid effectiveness implementation trial of the coaching intervention, delivered by non-specialists, within an existing system of care in South Africa. Our goal is to implement a feasible, scalable early autism intervention model in Africa by conducting research with culturally and linguistically diverse participants in community-based settings, that is inclusive of diverse stakeholder perspectives and incorporates task-shifting. In the proposed study, we will build on our current relationships with families, practitioners, and policy makers by formalizing these relationships and including other key stakeholder groups such as South African autistic self-advocates through a community-academic partnership, a key bridging factor in the EPIS implementation framework. The proposed project has three main objectives. First, to evaluate the real-world effectiveness of non-specialist delivered NDBI caregiver coaching for improving patterns of caregiver-child interaction and child developmental outcomes, and assess the cost- effectiveness of this approach. Second, to identify implementation determinants to inform scale-up. Third, to expand African autism research capacity to enhance scalability. This project also offers a unique opportunity to study variability in autism-related behaviors and phenomenology. We will therefore assess the degree to which response to intervention is moderated by caregiver and dimensional child characteristics. In addition, using an innovative digital assessment method, changes in dimensional quantitative measures of autism-related behaviors will be examined. Finally, cross-cultural differences in dimensional autism-related behaviors will be evaluated via comparison with existing quantitative phenotypic data gathered in U.S. studies. This study is timely and innovative and will inform scale-up of autism early intervention in Africa. Assessing the impact of a scalable intervention in an environment like South Africa which faces significant contextual challenges, increases the ecological validity and relevance of findings for many regions of the world that face with similar challenges.