Disseminating Scientific Information on Autism to the Latino Community

描述(由申请人提供)：本申请涉及广泛的挑战领域(15)：翻译科学和具体挑战主题15-NR-101：NIH研究计划中的合作伙伴：翻译研究的途径。自闭症谱系障碍(ASD)是一组神经发育障碍，会导致语言、学习、思维和社会交流方面的严重障碍。残疾儿童和成人在获得服务方面的种族、文化和语言差异的调查结果是一致的，无论所使用的服务系统是什么。具体调查结果显示，来自文化和语言不同家庭的自闭症儿童更难获得服务，比主流同龄人诊断得更晚，并接受不同的服务组合。研究表明，这些差异本质上是多因素的，但大多数研究表明，所有种族的消费者都报告了“缺乏信息”。该项目利用健康传播理论和面向关系的社会营销战略来开发和实地测试一个原型，将有关自闭症的科学文章提炼成消费者友好的受众定义的科学简报，并有效地向拉美裔家庭传播这些信息产品。这项工作的中心前提是，学术机构和服务于未得到充分服务的人口的社区网络之间需要强有力的合作，以建立一个“桥梁”基础设施，将研究成果转化为易于获取和有意义的格式。其目标是将可理解和有用的科学信息送到拉丁裔消费者手中。在我们目前的NIH合作伙伴研究计划的基础上，我们建议在这项翻译研究工作中利用Fiesta Education ativa作为研究社区和自闭症拉丁裔儿童家庭之间的桥梁实体，以1)开发和现场测试一种文化上适合消费者的产品格式，用于为有自闭症儿童的拉丁裔家庭设计的科学期刊文章；2)开发和现场测试两种专门针对拉丁裔社区的“面向关系”的知识转移战略；3)描述拉丁裔自闭症儿童家庭社区可用的社会空间知识网络的性质，以及这些网络可能如何支持或阻碍知识转移；4)评估项目知识转移干预措施的影响。该项目的重点是将有关自闭症谱系障碍的科学信息翻译成日常语言，以便拉美裔家庭能够在他们的健康决策过程中理解和利用科学发现。我们的研究是与Fiesta Education va合作完成的，Fiesta Education va是一个以社区为基础的教育、倡导和支持组织，服务于有残疾儿童的拉丁裔家庭。我们将共同开发和研究最有效的战略，将有关自闭症研究的科学信息转化为消费者和拉丁裔家庭的手中。长期目标是为全国的学术机构开发一个模式。

DESCRIPTION (provided by applicant): This application addresses broad Challenge Area (15): Translational Science and Specific Challenge Topic 15-NR-101: NIH Partners in Research Program: Pathways for Translational Research. Autism Spectrum Disorders (ASD) represent a group of neurodevelopmental disorders that cause significant impairments in language, learning, thinking and social communication. Findings of racial, cultural, and linguistic (RCL) disparities in access to services for children and adults with disabilities are consistent regardless of the service system being accessed. Specific findings show that children with ASD from culturally and linguistically diverse families have more difficulty accessing services, are diagnosed later than their mainstream counterparts and receive a different mix of services. Studies suggest that these disparities are multi-factorial in nature, but most studies indicate that a "lack of information" is reported by consumers from all ethnic groups. This project utilizes theories of health communication and relationship-oriented social marketing strategies to develop and field-test a prototype for distilling scientific articles on ASD into consumer-friendly audience-defined Science Briefs and to effectively disseminate these informational products to Latino families. The central premise of this work is that strong, robust collaborations between academic institutions and community-based networks serving underserved populations are necessary to create a "bridge" infrastructure to translate research findings into formats which are easily accessible and meaningful. The goal is to get scientific information that is understandable and useful into the hands of Latino consumers. Building on our current NIH Partners in Research Program, we propose to use Fiesta Educativa as the bridging entity between the research community and Latino families of children with autism in this translational research effort to 1) Develop and field-test a culturally appropriate consumer-accessible product format for scientific journal articles designed for Latino families with children with ASD; 2) Develop and field-test two "relationship-oriented" knowledge transfer strategies specific for the Latino community; 3) Describe the nature of the socio-spatial knowledge networks available to the community of Latino families of children with ASD and how these networks may support or impede knowledge transfer; and 4) Evaluate the impact of the project's Knowledge Transfer interventions. This project focuses on translating scientific information on autism spectrum disorders into everyday language so that Latino families can understand and utilize scientific discoveries in their health decision-making process. Our research is done in partnership with Fiesta Educativa, a community-based education, advocacy, and support organizing serving Latino families who have children with disabilities. Together, we will develop and study the most effective strategies to translate scientific information about autism research and bring it into the hands of consumers, Latino families. The long term goal is to develop a model for academic institutions nationwide.