The Early Intervention Research Group (EIRG) at Northwestern University has received a $13.7 million grant from the Patient-Centered Outcomes Research Institute (PCORI). The funding will support research into early intervention (EI) strategies for toddlers with developmental disabilities such as autism, Down syndrome, hearing loss, and developmental language delays.
The study's primary aim is to address disparities in EI outcomes for Black and Latinx families by evaluating three different service delivery methods. These include traditional therapist-delivered interventions, caregiver coaching interventions, and peer mentorship approaches. Researchers will assess the effectiveness of each method and explore their practicality in real-world settings.
Led by Megan Roberts, a professor in the Roxelyn and Richard Pepper Department of Communication Sciences and Disorders at Northwestern University's School of Communication, the study will begin on April 1. It involves 45 EI speech-language pathologists (SLPs) and 1,269 children with developmental disorders across Illinois. Additional families will be recruited directly from participating therapists' existing caseloads over the five-year duration of the study.
Roberts emphasized that "the goal is to examine different approaches to EI so that stakeholders, including policy makers, EI therapists, caregivers can use this information to make decisions about which early intervention approach is best suited for each family."
The three approaches under investigation include a traditional therapist-delivered intervention where responsive techniques are used directly with the child; caregiver coaching interventions where caregivers are taught these techniques; and a culturally responsive psychoeducation approach involving peer mentors.
Roberts noted the significance of this research particularly for Black and Latine families who face higher rates of discrimination: “We have around 37,000 children in Illinois in early intervention programs, and we want to make sure that they’re getting the most effective intervention so that we can maximize their long-term outcomes.”
PCORI Executive Director Dr. Nekela L. Cook stated that “this project was selected for PCORI funding not only for its scientific merit but commitment to engaging patients and other health care stakeholders.” She added that it has potential to address crucial evidence gaps in early interventions for children with developmental disabilities.
The award follows PCORI’s competitive review process involving patients, caregivers, scientists, and other stakeholders. Approval is pending completion of PCORI’s business review procedures.
In addition to Roberts, team members include Adin-Cristian Andrei and Aaron Kaat from Northwestern University; Sandy Magaña from the University of Texas-Austin; Jamie Pearson from North Carolina State University; Kristen Bottema-Beutel from Boston College; Dr. Morénike Giwa Onaiwu from Advocacy without Borders; and Karen Berman from Start Early.
Roberts highlighted collaboration within her team: “This is my first project that was co-created with a team with shared values… All of the decisions were not top down.”
PCORI is an independent nonprofit organization authorized by Congress to fund patient-centered comparative clinical effectiveness research aimed at improving healthcare decision-making processes through evidence-based information.