Disseminating Scientific Information on Autism to the Latino Community

向拉丁裔社区传播有关自闭症的科学信息

• 批准号: 7936795
• 负责人: Clara M Lajonchere
• 金额: $ 46.65万
• 依托单位: UNIVERSITY OF SOUTHERN CALIFORNIA
• 依托单位国家: 美国
• 财政年份: 2009
• 资助国家: 美国
• 起止时间: 2009-09-30 至 2012-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7936795
• 关键词: Address; Adult; Advocacy; Area; Autistic Disorder; Cellular Phone; Child; Collaborations; Communities; Data; Decision Making; Diagnostic Services; Disabled Children; Education; Engineering; Ethnic group; Evaluation; Event; Exposure to; Family; Future; Goals; Hand; Health; Health Communication; Health Knowledge, Attitudes, Practice; Health Services Accessibility; Impairment; Institution; Intervention; Knowledge; Language; Language Development; Latino; Life; Linguistics; Los Angeles; Mainstreaming; Market Research; Medical; Methods; Mission; Modeling; Nature; Network-based; Neurodevelopmental Disorder; Outcome; Pathway interactions; Population; Process; Reporting; Research; Research Infrastructure; Research Personnel; Resources; Science; Scientist; Services; Social Marketing; Students; Survey Methodology; System; Testing; Thinking; Training; Translating; Translational Research; Underserved Population; United States National Institutes of Health; Universities; Work; autism spectrum disorder; base; cost; design; disability; forging; journal article; post intervention; preference; programs; prototype; science education; social communication; teacher; theories

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.

描述（由申请人提供）：本申请涉及广泛的挑战领域（15）：转化科学和特定挑战主题15-NR-101：NIH研究计划合作伙伴：转化研究途径。自闭症谱系障碍（ASD）是一组神经发育障碍，会导致语言，学习，思维和社会沟通方面的严重障碍。调查结果的种族，文化和语言（RCL）的差异，在获得服务的儿童和成人残疾人是一致的，无论服务系统正在访问。具体调查结果表明，来自文化和语言多样化家庭的自闭症谱系障碍儿童在获得服务方面遇到更大困难，比主流儿童诊断得更晚，并且接受的服务组合也不同。研究表明，这些差异是多因素造成的，但大多数研究表明，所有族裔群体的消费者都报告“缺乏信息”。该项目利用健康传播和关系导向的社会营销策略的理论，开发和现场测试的原型，用于将ASD的科学文章提炼成消费者友好的观众定义的科学简报，并有效地将这些信息产品传播给拉丁美洲家庭。这项工作的中心前提是，学术机构和服务于得不到充分服务的人口的社区网络之间必须进行强有力的合作，以建立一个“桥梁”基础设施，将研究结果转化为易于获得和有意义的格式。我们的目标是获得科学的信息，是可以理解的和有用的拉丁美洲消费者手中。基于我们目前的NIH研究计划合作伙伴，我们建议使用Fiesta Educativa作为研究社区和自闭症儿童拉丁裔家庭之间的桥梁实体，在这项转化研究工作中，1）开发和现场测试文化上适当的消费者可访问的产品格式，用于为自闭症儿童拉丁裔家庭设计的科学期刊文章; 2）制定和实地测试两个“关系导向”的知识转移战略，具体为拉丁美洲社区; 3）描述社会空间知识网络的性质提供给社区的自闭症儿童的拉丁美洲家庭，以及这些网络如何可能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。该项目的重点是将自闭症谱系障碍的科学信息翻译成日常语言，以便拉丁美洲家庭能够在其健康决策过程中理解和利用科学发现。我们的研究是在与嘉年华Educativa，以社区为基础的教育，宣传和支持组织服务谁有残疾儿童的拉丁美洲家庭的合作伙伴关系。我们将共同开发和研究最有效的策略，以翻译有关自闭症研究的科学信息，并将其带到消费者手中，拉丁美洲家庭。长期目标是为全国的学术机构建立一个模式。