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.
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.
| Lajonchere, Clara M; Wheeler, Barbara Y; Valente, Thomas W et al. (2016) Strategies for Disseminating Information on Biomedical Research on Autism to Hispanic Parents. J Autism Dev Disord 46:1038-50 |
