UB team receives grant to study hospital complications in children with special health care needs

BUFFALO, N.Y. – Children with special health care needs, including chronic conditions such as attention deficit/hyperactivity disorder (ADHD), autism, depression, spina bifida or Down syndrome, are at greater risk for developing hospital complications following physical trauma.

But the reasons for this are unknown. Researchers from the University at Buffalo are now leading a study to find out why these complications may occur by understanding the experiences of parents and caregivers seeking emergency care for their injured child.

“Depending on the special health care needs, the child may need more intensive monitoring because they are not taking their medications or the child is removing equipment such as IVs that they need to recover. Additionally, it may be more challenging to obtain vital signs, which are important to detecting if the child’s life is in danger,” says Denise Lillvis, PhD, the study’s principal investigator and an assistant professor in the Department of Epidemiology and Environmental Health in UB’s School of Public Health and Health Professions.

Lillvis received a $100,000 grant from the National Center for Advancing Translational Sciences (NCATS), part of the National Institutes of Health, for the two-year project.

It’s a follow-up to a study Lillvis led on complications following serious pediatric injury, focusing on children with special health care needs. That study, funded by the Children and Youth with Special Health Care Needs National Research Network, found that children with chronic conditions were at higher risk of complications following serious pediatric injury than children without such conditions.

As a result, Lillvis wanted to examine this difference further, which led to funding from UB’s Clinical and Translational Science Institute (CTSI) to interview local health care professionals involved in the care of children with injuries.

“We spoke with EMTs and paramedics on the prehospital side, and nurses, advanced practice providers and physicians on the hospital side. We asked them about their comfort and experiences with caring for injured children who also had a chronic condition,” Lillvis says.

A hypothetical example would be a child or youth with autism who is injured in a car crash and is taken to a level 1 trauma center in Buffalo. Lillvis and her colleagues asked EMS and hospital providers at both Oishei Children’s Hospital and Erie County Medical Center how they would approach caring for this pediatric patient and how their approach might differ compared to a pediatric patient without autism.

“Of course, this is only the health care perspective,” says Lillvis. “We also wanted to speak with family caregivers about their experiences obtaining care for their injured child with chronic conditions. What were some of the challenges they faced and what strengths did they draw upon during their interactions with health care professionals? As every minute could make the difference when a child is injured, it’s important that information is shared and that family caregivers and health professionals trust each other.”

The NCATS funding will help the team get the family perspective to inform interventions to improve hospital interactions during such a critical time.

Lillvis is grateful for the group of family partners that advise her and her colleagues at all stages of their research. “Our partners are family caregivers of children with special health care needs and help guide the project from their lived experience perspective,” she says. “They provided feedback on the interview guide and strategies to recruit family caregivers. Because of their role as expert consultants, we built them into the project budget and provide them with an honorarium for their time.”

Study co-investigators include Brian Clemency, DO, professor in the Department of Emergency Medicine in the Jacobs School of Medicine and Biomedical Sciences at UB; Bonnie Vest, PhD, research associate professor in the Department of Family Medicine, Jacobs School; Heather Orom, PhD, associate professor in the Department of Community Health and Health Behavior, School of Public Health and Health Professions; and Tamara Simon, MD, professor of pediatrics in the Keck School of Medicine at the University of Southern California.