$13.7 million award to advance early intervention for toddlers with developmental disabilities

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$13.7 million award to advance early intervention for toddlers with developmental disabilities

Northwestern-led research to explore effective, equitable solutions for diverse families across Illinois

• Research will focus on reducing disparities for Black and Latinx families through culturally responsive methods

• Three approaches investigated: traditional therapist-delivered intervention, caregiver coaching and peer mentorship

• Five-year study involves more than 1,000 children across Illinois to identify the most effective early intervention approach

EVANSTON, Ill. --- The Early Intervention Research Group(EIRG) at Northwestern University has been awarded $13.7 million by the Patient-Centered Outcomes Research Institute(PCORI) to investigate different early intervention (EI) approaches for toddlers with developmental disabilities, including children diagnosed with autism, Down syndrome, hearing loss and developmental language delays.

The overall objective is to reduce disparities in EI outcomes for Black and Latinx families by comparing three approaches to service delivery. The study aims to determine which approaches are most effective, for which families and why they are effective. Researchers will also investigate how therapists deliver the interventions and characterize the acceptability and feasibility of these interventions for use in real-world settings.

Led by Megan Roberts,professor and associate chair of the Roxelyn and Richard Pepper Department of Communication Sciences and Disordersin the School of Communication, the studyis set to begin April 1. It will involve 45 EI speech-language pathologists (SLPs) and 1,269 children with developmental disorders they serve on their caseloads across the state of Illinois. Additional families will be directly recruited from participating early intervention therapists' existing caseloads. The study is expected to last five years.

"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," Roberts said.

Comparing three EI approaches

Among the three EI approaches that will be examined is the traditional therapist-delivered intervention whereby the EI therapist directly uses responsive techniques with the child. Researchers will also investigate caregiver coaching interventions in which the EI therapist coach the caregiver to use responsive techniques with the child. Finally, the third approach investigated involves a culturally responsive caregiver psychoeducation approach - or peer mentors - and will be implemented by another caregiver of a child with a developmental disorder to help build trust and connection.

"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," Roberts said, noting that investigating the effectiveness of the third approach is particularly important for Black and Latine families who experience greater rates of discrimination and stigma.

"This project was selected for PCORI funding not only for its scientific merit, but commitment to engaging patients and other health care stakeholders and also for its conduct in real-world settings," said PCORI Executive Director Dr. Nekela L. Cook. "It has the potential to answer an important question for early interventions for children diagnosed with developmental disabilities and fill a crucial evidence gap. We look forward to following the study's progress and working with EIRG to share its results."

This study was selected through PCORI's highly competitive review process in which patients, caregivers and other stakeholders join scientists to evaluate proposals. The award has been approved pending completion of PCORI's business and programmatic review and issuance of a formal award contract.

In addition to Roberts, the research team includes Adin-Cristian Andrei and Aaron Kaat also of Northwestern, Sandy Magaña of the University of Texas-Austin, Jamie Pearson of North Carolina State University, Kristen Bottema-Beutel of Boston College, Dr. Morénike Giwa Onaiwu of Advocacy without Borders, and Karen Berman of Start Early.

"This is my first project that was co-created with a team with shared values and goals about how we can change the field," Roberts said. "All of the decisions were not top down. Instead, we sought input about what measures we should use, how long the intervention should be and who should be in the sample. We know that the earlier that children get access to the most effective interventions, the better the outcomes."

PCORI is an independent, nonprofit organization authorized by Congress with a mission to fund patient-centered comparative clinical effectiveness research that provides patients, their caregivers and clinicians with the evidence-based information they need to make better-informed health and health care decisions.

Early Intervention Research Group, led by principal investigator Roberts, supports and enhances early development of infants and toddlers through research and practice, and includes scientists and clinicians who focus on family-centered early communication interventions for young children with language delays.