Tristram Smith1, Suzannah Iadarola2, David S Mandell3, Robin Harwood4, Connie Kasari5. 1. Department of Pediatrics, University of Rochester Medical Center, Rochester, NY. Electronic address: Tristram_Smith@URMC.Rochester.edu. 2. Department of Pediatrics, University of Rochester Medical Center, Rochester, NY. 3. Center for Mental Health Policy and Services Research, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pa. 4. Division of Research, Office of Epidemiology and Research, Maternal and Child Health Bureau, Health Resources and Services Administration, Rockville, Md. 5. Graduate School of Education and Information Sciences, University of California, Los Angeles, Calif.
Abstract
OBJECTIVE: To illustrate the process of community-partnered participatory research to develop and evaluate interventions for children with autism in urban school districts. METHODS: We formed partnerships of school personnel, parents, and researchers to guide the project. We then conducted focus groups, key informant interviews, and town halls to explore how public schools currently serve students with autism. We used findings from these activities to adapt interventions for public schools. We then tested interventions in randomized clinical trials (RCTs). RESULTS: Community input indicated a particular need for interventions to improve children's social interaction and instructional supports to promote their success throughout the day. On the basis of this input, we adapted 2 interventions: Remaking Recess for improving peer engagement during social times; and Schedules, Tools, and Activities for Transition (STAT) for facilitating successful transitions between activities throughout the daily routine. Results of the RCT of Remaking Recess are not yet available. The RCT of STAT involved 150 children and 56 teachers. Teachers reported high buy-in and increased their proficiency at implementing STAT; children with ASD reduced their disruptive behavior and made progress toward teacher-nominated goals. However, teachers' implementation remained inconsistent, and children did not reliably improve in academic engagement or independence. CONCLUSIONS: The findings suggest that although community-partnered participatory research has limitations, it can assist in selecting interventions to address community priorities and produce some favorable outcomes for children with autism in public schools. An important next step is to evaluate the sustainability of the interventions introduced in this project.
OBJECTIVE: To illustrate the process of community-partnered participatory research to develop and evaluate interventions for children with autism in urban school districts. METHODS: We formed partnerships of school personnel, parents, and researchers to guide the project. We then conducted focus groups, key informant interviews, and town halls to explore how public schools currently serve students with autism. We used findings from these activities to adapt interventions for public schools. We then tested interventions in randomized clinical trials (RCTs). RESULTS: Community input indicated a particular need for interventions to improve children's social interaction and instructional supports to promote their success throughout the day. On the basis of this input, we adapted 2 interventions: Remaking Recess for improving peer engagement during social times; and Schedules, Tools, and Activities for Transition (STAT) for facilitating successful transitions between activities throughout the daily routine. Results of the RCT of Remaking Recess are not yet available. The RCT of STAT involved 150 children and 56 teachers. Teachers reported high buy-in and increased their proficiency at implementing STAT; children with ASD reduced their disruptive behavior and made progress toward teacher-nominated goals. However, teachers' implementation remained inconsistent, and children did not reliably improve in academic engagement or independence. CONCLUSIONS: The findings suggest that although community-partnered participatory research has limitations, it can assist in selecting interventions to address community priorities and produce some favorable outcomes for children with autism in public schools. An important next step is to evaluate the sustainability of the interventions introduced in this project.