Through her research and her role in developing policy recommendations, Angela Hein Ciccia has sought to expand access to care for children and youth whose needs often go unrecognized. Photo by Joe Ciccia.
Angela Hein Ciccia remembers when and where she decided to dedicate her career to helping young people recover from brain injuries.
The year was 1998, and Ciccia, a speech-language pathologist who had just completed her training at The George Washington University, had accepted a clinical fellowship at the University of Texas Medical Branch (UTMB), an academic health center in Galveston. Assigned to the center’s pediatric rehabilitation facility, Ciccia saw firsthand the devastating communication disorders that traumatic brain injury (TBI) could cause in children and adolescents.
“I knew that was my niche,” she recalls. “There was just no question about it.”
Now an associate professor at Case Western Reserve, where she teaches in the Communication Sciences Program in the Department of Psychological Sciences, Ciccia (CWR ’96, GRS ’03) has spent more than two decades studying TBI-related cognitive communication disorders among children and teenagers—disorders that can undermine their performance in school and prevent them from forming and maintaining friendships.
Her work has ranged widely. Together with colleagues and students, Ciccia has assessed what parents do and do not know about the aftereffects of TBI; documented the failure of our medical and educational systems to provide adequate services to children with TBI; sought ways to address this failure; and pursued a strategy for using technology to reach injured children in underserved communities—children who are even less likely than most to receive proper care.
Yet much remains to be done. According to the Centers for Disease Control and Prevention (CDC), more than 800,000 children and youths in the United States went to the emergency room in 2014 because of a bump, blow or jolt to the head, with the highest rates of TBI occurring among those aged 0 to 4 and 15 to 19. While 80% of TBIs are considered mild, even those can lead to impairments in attention, memory, speed of thought and executive function—the ability to organize one’s thoughts and control one’s feelings and behaviors.
All of these cognitive functions are essential to communication. Thus, when a brain injury causes deficits in any of them, the resulting disorders can interfere with a person’s capacity to speak, listen, read or write. They can also impede normal social interaction by making it difficult to follow the unwritten rules of verbal and nonverbal communication—taking turns in conversation, for example, or making eye contact—and to recognize humor and sarcasm. Among children and adolescents with such disorders, poor academic outcomes and social isolation often ensue.
Ciccia is especially committed to identifying and promoting evidence-based interventions for school-age children who have sustained a brain injury. Most recently, she secured a four-year, $2.2 million CDC grant to assess the effectiveness of a formal return-to-school program for students with TBI. Her project could lead to improved federal policy recommendations for treating children and youth whose lives have been derailed by TBI.
Better care for these patients is sorely needed, Ciccia says. Although increased attention to TBI-related disorders in military veterans and professional athletes has spurred progress in assessing and treating adults, the resulting interventions aren’t necessarily appropriate for children and adolescents, whose brains are still developing. Meanwhile, clinical research focusing on patients aged 0 to 5 remains relatively sparse.
Ciccia also points to the difficulty parents and teachers often have in recognizing that a child with TBI has developed a cognitive communication disorder. The acute symptoms of mild TBI—headache, dizziness, light sensitivity—can subside in a matter of days or weeks. In contrast, cognitive communication disorders may take years to manifest, surfacing only as children mature and must cope with increasing academic demands.
“If you’re injured at 1, 2 or 3 years old, your parents might not link that to the difficulties you’re having in middle school,” says Jessica Salley, a doctoral student in the Ciccia lab.
To some extent, Ciccia explains, that is because pediatric TBI tends to be viewed as an acute injury, like a broken arm, that will heal in short order. In reality, it is more like a chronic disease such as diabetes that requires long-term monitoring and care. “There’s a historical assumption that these kids are going to be just fine; they’re resilient, they’ll bounce back,” Ciccia says. “But that’s not always true.”
Born and raised in Cleveland, Ciccia recalls attending a summer camp run by the local Catholic Youth Organization. One year, a large contingent of deaf children was there as well. “That,” she says, “was my entryway into communication challenges.”
Years later, when she went to college at CWRU, Ciccia majored in speech-language pathology, with the goal of providing school-based clinical services to deaf children. In the course of her studies, however, she became aware of a vast array of communication disorders and their causes. After taking a seminar about hospitalized children and volunteering at University Hospitals Rainbow Babies and Children’s Hospital, she decided to practice as a speech-language pathologist in healthcare settings.
During her fellowship year at UTMB, one patient made an especially deep impression on Ciccia: a 16-year-old male who’d had the language areas of his brain surgically removed following a severe brain injury. Working with him taught Ciccia much about the nature of cognitive communication disorders, but it also revealed how little she and her colleagues knew about assessment and treatment for children and teens with TBI.
Seeking answers, Ciccia approached Lyn Turkstra, a well-known expert in pediatric brain injury, at a professional conference. Now a professor and assistant dean in the speech-language pathology program at McMaster University in Ontario, Canada, Turkstra had recently been appointed to CWRU’s communication sciences faculty. After talking with Ciccia about her adolescent patient, Turkstra invited her to return to CWRU as her doctoral student. Although Ciccia hadn’t planned on entering a doctoral program immediately after her fellowship, the offer was too good to pass up.
From left: Before the COVID-19 pandemic, Angela Hein Ciccia and doctoral student Jessica Salley conferred in a lab at Cleveland Hearing and Speech Center, home to the Communication Sciences Program in the Department of Psychological Sciences. Photo by Mike Sands.
As a graduate student, and then as a junior faculty member at CWRU (she became an instructor in 2003 and rose to the rank of associate professor by 2016), Ciccia did research on social cognition—the role that cognitive processes play in social interactions by enabling us to interpret other people’s behaviors and regulate our own. Among other approaches, she used functional magnetic resonance imaging to study brain activity in adolescents while they responded to videos of people violating social norms. She also investigated conversational impairments among school-age children with TBI.
Today, Ciccia’s own graduate students explore both cognition in general and social cognition in particular. Salley, for example, is trying to determine whether children with TBI experience cognitive fatigue, a kind of mental exhaustion that can make it difficult to function both academically and socially. Libby Crook is interested in how brain injury affects younger students’ social behaviors and friendships at school. Alyssa Coreno (GRS ’20, communication sciences) devoted her dissertation research to language and cognitive recovery among teens with concussion. narrowing disparities
Along with her efforts to understand TBI-related cognitive communication disorders, Ciccia has worked to expand access to care, especially for urban, low-income populations. She and two collaborators—Professor Elizabeth Short (Department of Psychological Sciences) and Professor Nancy Roizen (Department of Pediatrics, CWRU School of Medicine)—have developed a project that uses videoconferencing and the internet to identify inner-city children in need of developmental services. The goal is to reach not only children with TBI, but also those with neurodevelopmental disorders such as autism and learning disabilities.
Known as INvesT, or Identification of Neurodevelopmental Disabilities in Underserved Children using Telehealth, the project administers an online survey that flags at-risk children during their visits to Northeast Ohio Neighborhood Health Services, a network of community clinics. Participants are then screened by videoconference for language and cognitive impairments and referred to federally funded intervention programs, such as developmental clinics and special-education preschools, for further evaluation and treatment.
Ciccia notes that children with high socioeconomic status tend to have neurodevelopmental disabilities diagnosed between the ages of 2 and 3, while those with low socioeconomic status typically aren’t diagnosed until much later—sometimes not until the age of 8. CWRU’s Schubert Center for Child Studies recently awarded Ciccia and her collaborators a pilot grant to determine whether INvesT decreases the age of identification for high-risk, low-income children.
Ciccia’s work with INvesT has helped her appreciate how many school-age children with brain-related disorders of any kind fail to receive the support they need. As a result, she has increasingly focused her energies on identifying and overcoming the factors that prevent children and adolescents with brain injuries from getting proper care.
In 2013, Ciccia and Jennifer Lundine, then a doctoral student at The Ohio State University and now an assistant professor of speech and hearing science at OSU, began reviewing the rates at which children were referred for speech-language pathology services after being seen for TBI at two major pediatric hospitals. (Without such referrals, children who develop cognitive communication disorders at any point after their injury are less likely to obtain services.) To the researchers’ dismay, the study found a 36% referral rate at one hospital, and a 2% referral rate at the other. “One was not great, but the other was truly abysmal,” Lundine says.
Last January, Salley presented an extension of this study at the International Cognitive-Communication Disorders Conference in California. Among children who had suffered an acquired brain injury (whether traumatic or non-traumatic) in early childhood, nearly 66% received acute therapy, such as speech-language or physical therapy, at a hospital. However, fewer than 45% of the families received referrals for follow-up care—including educational or rehabilitation services or brain injury education—when their children were discharged. By the time the children were in middle school, parents felt that more than one-fifth of them had an unmet need for special education services.
Ciccia and Lundine went on to interview children with TBI as well as caregivers and medical professionals. The resulting paper demonstrated the need for more research and better follow-up. Now, through a grant from the Ohio Department of Transportation’s Emergency Medical Services, Ciccia, Lundine and Crook are preparing to interview additional caregivers and medical professionals in hopes of improving services across the state for children with TBI. Because rates of TBI tend to be disproportionately high among incarcerated youth, Ciccia hopes to do a separate survey of judges and staff in the Ohio juvenile justice system to gauge their knowledge of brain injuries and their attitudes toward them.
Ciccia is also involved in broader efforts to improve support for children with brain injuries. In 2017, she contributed to a white paper by the American Congress on Rehabilitation Medicine’s Pediatric–Adolescent Task Force that emphasized the chronic nature of TBI-related disorders and offered a series of recommendations, including evaluating all children with TBI for rehabilitation services and providing state support for educators working with this population. In response, the CDC issued a report to Congress in 2018 on the management of TBI in children and issued guidelines for managing mild TBI in particular.
The CDC’s growing commitment to addressing pediatric TBI is reflected in its recent grant to Ciccia, who will be the principal investigator evaluating a program that supports students with brain injuries.
BrainSTEPS, which operates statewide in Colorado and Pennsylvania, establishes interdisciplinary teams that consult with teachers and parents to develop personalized education plans for injured children, refer them for services such as speech therapy and special education, and respond to their changing needs. The program is of interest to both Ciccia and Lundine, the co-principal investigator on the study, because it appears to fill some of the gaps in care they have identified in their previous research.
Ciccia and Lundine hope to recruit 20% of the participants in Pennsylvania’s BrainSTEPS program, or approximately 450 students, and compare their outcomes with those of a matching sample of Ohio students who have sustained the same kinds of injuries but lack access to such a program. The researchers will analyze a wide array of data, including grades and school attendance, responses to online questionnaires that measure the students’ cognitive skills and social interactions, and videoconference interviews with families. In addition, Ciccia and Lundine recently expanded the scope of their study to assess how schools’ responses to the COVID-19 pandemic have affected students with TBI as they resume their education.
For a pediatric TBI study, the cohort of research subjects that Ciccia and Lundine envision is extraordinarily large. But the online and videoconference elements, which will draw on Ciccia’s expertise with telehealth, should facilitate recruitment by making it easier for busy families to participate.
“We really don’t have data like this, in numbers like this, for kids with brain injuries,” Ciccia says. “Just gathering the data alone will be a game-changer.”
Alexander Gelfand is a freelance writer in New York City.