Oregon Health & Science University researchers are leading two studies to address health care disparities and improve outcomes for children with early childhood communication disorders by increasing equitable access to care.
Communication disorders—including primary speech and language disorders, autism spectrum disorder, and hearing impairment—are the most common disabilities in early childhood, affecting 1 in 5 children before age 6. Early identification and treatment of these disorders improves social, emotional, behavioral, and academic outcomes and reduces educational, criminal justice, and health care costs. However, many children with communication disorders are not diagnosed or treated until long after their first symptoms appear.
Children of color, in particular, face significant disparities in timely and adequate access to early care for communication disorders. The OHSU research, supported by $1.5 million in NIH funding, aims to understand how macro-level factors — such as structural racism and discrimination or limited English proficiency — can limit opportunities and resources for marginalized populations.
“Despite the high incidence of childhood communication disorders, children of color continue to be neglected and underserved. In addition, factors such as poverty, geography or language barriers can exacerbate these differences,” said Katherine E. Zuckerman, MD, MPH, associate professor of pediatrics at the OHSU School of Medicine and lead investigator on both studies. “Our efforts are an important step in closing these gaps and ensuring that all children can receive appropriate diagnosis and treatment for communication disorders, allowing them greater opportunities for success in their young lives.”
The first study will use a mixed-methods design to develop a comprehensive, multi-country analysis of the sources of structural racism and discrimination in early communication disorder care. The study will take place in five states – Oregon, Minnesota, Indiana, Florida and Arizona – and will include more than 100,000 children with communication disorders. Researchers will engage stakeholders, including parents and primary care physicians, to discover and understand these disparities and develop actionable, evidence-based practice and policy recommendations.
The second study will work with eight health systems across the country, including OHSU Health, to use a multilingual survey of families whose children live with autism spectrum disorder to understand differences among families with limited English proficiency. The results of the study will be applied to real-world practices and used to guide the analysis of future autism studies, influencing key interventions ranging from treatment development to policy initiatives.
Representation is a core value of this work, Zuckerman said. Her diverse team includes interns and research associates from many cultural backgrounds – many with first-hand experience of the communities they work with.
Zuckerman hopes this research will level the playing field for all children and families, improving both health outcomes and overall quality of life. “We must strive to meet the needs of all population groups,” she said. “It is critical that early intervention efforts include all families and their needs, regardless of the socioeconomic barriers they may face.”
Assessing Structural Differences in Children with Early Communication Disorders (NIH/NIDCD R01DC020402, FY22: $717,005)
Validating Measures and Unpacking Differences in Service Use for Diverse Children with Autism (NIH/NIMH R01MH128275, FY22: $717,005)