Importance of Study: Racial and ethnic minorities who have children with autism experience delays in access to therapy services that can result in poorer outcomes, decreased quality of life, and increased parental and financial stress. Many autism interventions were tested with only White participants with the assumption that they could be transferable to minority populations. However, research has found that this is not the case and that interventions that are not adapted to an individual’s culture and ethnicity do not work as well and are not used as frequently. Minority stakeholder voices are needed to assure interventions are culturally sensitive and appropriate.
In this project, the research team will compare two methods of stakeholder engagement, design thinking (DT) and focus groups (FG), to determine which is better at getting input on the facilitators and barriers in access to therapy for children with autism. FG is a more traditional method and DT is an innovative, interactive human-centered approach. This study focuses on Hispanic and Latinos as this is the largest minority group in the United States with one of the fastest-growing groups of children with autism but who remain underserved.
The long-term objective is to improve the functional skills and health of Hispanic/Latino children with autism and their families by improving access to an occupational therapy intervention designed to improve daily living skills, socialization and quality of life for Hispanic/Latino children with autism and their families. Occupational therapy using Ayres Sensory Integration (OT/ASI), the only evidence-based intervention that addresses the sensory symptoms in autism (e.g., over- and under-reactivity to touch, sounds, sights or pain). This therapy is highly valued, highly requested and utilized by caregivers of children with autism, but it has been tested mainly with White children.
The specific aims of this study are to:
Aim 1: Compare two methods of stakeholder (participant) engagement in the research process.
- Stakeholder engagement during DT and FG: Stakeholder Centric Instrumentation Process administered immediately following each DT and FG sessions.
Aim 2: Compare the acceptability and practicality of culturally adapted OT/ASI manual.
- Primary outcome: Acceptability of Intervention Measure.
- Secondary outcome: Intervention Appropriateness Measure and the Feasibility of Intervention Measure. A stakeholder group that is not aware of the study's aims will complete these ratings.
First, Hispanic/Latino caregivers will be randomized to either DT or FG engagement sessions. Second, researchers will use input from these engagement sessions to adapt two versions of the OT/ASI manual, one using DT data and the other using FG data. Outcomes are evaluated following each step. Following completion of this project, planned outputs of the study are data on the most effective minority stakeholder engagement method and a culturally adapted OT/ASI manual for Hispanic and Latino children with autism for clinicians and researchers. This information can support future researchers who are engaging Hispanic/Latino individuals or other minority groups in research. Following this study, the team plans to conduct a trial to evaluate the outcomes of the adapted intervention. This trial will be conducted in community centers and outpatient clinics serving children with autism.
This project utilizes a large and diverse team of stakeholders. The Stakeholder Research Steering Committee, Stakeholder Advisory Board, and Stakeholder Evaluation and Dissemination Advisory Boards include Hispanic/Latino caregivers of children with autism, Hispanic/Latino individuals with autism, Hispanic/Latino cultural experts, and clinicians who work with Hispanic/Latino individuals. The team also include leaders in Hispanic/Latino research and clinical practice. These individuals will serve on advisory boards to advise and direct the study and assist with the distribution of study findings.
Stakeholder participants in the engagement sessions are Hispanic/Latino caregivers of children with autism, Hispanic/Latino individuals with autism and clinicians who work with Hispanic/Latino children with autism. They will rate their satisfaction and quality of engagement following each session as well as provide data for manual adaptations that will be compiled into cultural adapted manuals and rated by a new group of stakeholders.
*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.