Abstract：
BACKGROUND: Autism is a complex neurodevelopmental disability with global prevalence of one in 100 individuals. Poor access to interventions in both under-resourced regions of high-income countries and low- and middle-income countries has deleterious effects on the health and wellbeing of individuals with autism and their families. Our objective was to utilize a reciprocal innovation framework and participatory methods to adapt and co-develop a culturally grounded group-based wellbeing and naturalistic developmental behavioural intervention (NDBI) training program for caregivers of young children with autism to be implemented in Kenya and rural Indiana.
METHODS: This study was conducted within the Academic Model Providing Access to Healthcare (AMPATH) program. An evidence-informed Naturalistic Developmental Behavioral Intervention (NDBI) previously utilized in Indiana was adapted and iteratively refined using the Ecological Validity Framework (EVF) by a team of US and Kenyan disability experts. Key adaptations to the program were made across the EVF domains of language, persons, metaphors/content, concepts, goals, methods, and context.
RESULTS: Substantial cultural adaptations were made to the NDBI following the EVF model, including the addition of traditional Kenyan cultural practices, use of narrative principles, and focus on daily routines over play. Pepea, the adapted program, involves 10 group sessions covering content in basic education on autism, positive caregiver coping strategies, and behavioural skills training to promote child communication and reduce challenging behaviour. Key adaptations for Pepea were integrated back into a US NDBI caregiver training program.
CONCLUSIONS: This study fills a critical gap by detailing the adaptation process of a caregiver wellbeing and naturalistic developmental behavioural training program for caregivers of children with autism in low-resource settings. Our next steps are to report on mixed-methods outcomes from pilot implementation. Our long-term goal is to apply these insights to advance sustainable and scalable autism intervention services across the globe.
METHODS: This study was conducted within the Academic Model Providing Access to Healthcare (AMPATH) program. An evidence-informed Naturalistic Developmental Behavioral Intervention (NDBI) previously utilized in Indiana was adapted and iteratively refined using the Ecological Validity Framework (EVF) by a team of US and Kenyan disability experts. Key adaptations to the program were made across the EVF domains of language, persons, metaphors/content, concepts, goals, methods, and context.
RESULTS: Substantial cultural adaptations were made to the NDBI following the EVF model, including the addition of traditional Kenyan cultural practices, use of narrative principles, and focus on daily routines over play. Pepea, the adapted program, involves 10 group sessions covering content in basic education on autism, positive caregiver coping strategies, and behavioural skills training to promote child communication and reduce challenging behaviour. Key adaptations for Pepea were integrated back into a US NDBI caregiver training program.
CONCLUSIONS: This study fills a critical gap by detailing the adaptation process of a caregiver wellbeing and naturalistic developmental behavioural training program for caregivers of children with autism in low-resource settings. Our next steps are to report on mixed-methods outcomes from pilot implementation. Our long-term goal is to apply these insights to advance sustainable and scalable autism intervention services across the globe.
摘要：
背景：自闭症是一种复杂的神经发育障碍，全球患病率为100人中的1人。在高收入国家和低收入和中等收入国家的资源不足地区，缺乏获得干预措施的机会对自闭症患者及其家庭的健康和福祉产生了有害影响。我们的目标是利用互惠创新框架和参与性方法来适应和共同开发基于文化的基于群体的福祉和自然主义发展行为干预（NDBI）培训计划，该计划将在肯尼亚和农村地区实施。印第安纳州。
方法：这项研究是在提供医疗保健（AMPATH）计划的学术模型中进行的。由美国和肯尼亚的残疾专家组成的团队使用生态有效性框架（EVF）对印第安纳州先前使用的循证自然主义发展行为干预（NDBI）进行了调整和迭代完善。对该程序的关键改编是跨语言的EVF领域进行的，人员,隐喻/内容，概念,目标,方法,和背景。
结果：根据EVF模型对NDBI进行了大量的文化适应，包括增加传统的肯尼亚文化习俗，使用叙事原则，专注于日常生活而不是玩耍。Pepea,改编的节目，涉及10个小组会议，涵盖自闭症基础教育的内容，积极的照顾者应对策略，和行为技能培训，以促进儿童沟通和减少挑战性行为。Pepea的关键适应被整合到美国NDBI护理人员培训计划中。
结论：这项研究填补了一个关键的空白，详细介绍了低资源环境中自闭症儿童看护人的健康适应过程和自然发展行为训练计划。我们的下一步是报告试点实施的混合方法成果。我们的长期目标是应用这些见解在全球范围内推进可持续和可扩展的自闭症干预服务。
方法：这项研究是在提供医疗保健（AMPATH）计划的学术模型中进行的。由美国和肯尼亚的残疾专家组成的团队使用生态有效性框架（EVF）对印第安纳州先前使用的循证自然主义发展行为干预（NDBI）进行了调整和迭代完善。对该程序的关键改编是跨语言的EVF领域进行的，人员,隐喻/内容，概念,目标,方法,和背景。
结果：根据EVF模型对NDBI进行了大量的文化适应，包括增加传统的肯尼亚文化习俗，使用叙事原则，专注于日常生活而不是玩耍。Pepea,改编的节目，涉及10个小组会议，涵盖自闭症基础教育的内容，积极的照顾者应对策略，和行为技能培训，以促进儿童沟通和减少挑战性行为。Pepea的关键适应被整合到美国NDBI护理人员培训计划中。
结论：这项研究填补了一个关键的空白，详细介绍了低资源环境中自闭症儿童看护人的健康适应过程和自然发展行为训练计划。我们的下一步是报告试点实施的混合方法成果。我们的长期目标是应用这些见解在全球范围内推进可持续和可扩展的自闭症干预服务。
