Investigating the daily impact of disability in children

Roxanna Bendixen, Ph.D.

Whether it’s recess, extracurricular activities, sleepovers or other forms of social participation, children with disabilities are often on the outside looking in.

“It can be hard for many children to make a friend and keep a friend; it’s even harder for children with disabilities,” said Roxanna Bendixen, Ph.D., OTR/L, a research assistant professor in the department of occupational therapy.

“Ideally, we would hope that inclusive early childhood programs would be characterized by children’s willingness to understand, go beyond, accept, and even overlook differences. Regardless of whether these are differences in physical characteristics or behavior patterns, children with differences still have a need to establish productive social relationships,” Bendixen said. “But based on my research with children growing up with disability and their parents, this isn’t always happening.”

Bendixen studies the impact of disability and disease on children’s lives and how disease affects participation in activities, social development and quality of life. Functional measurements are critical for understanding a child’s abilities, but they don’t provide the whole picture of how the child’s life is affected by disability, Bendixen said.

“Clinical assessments are important and essential outcome measures for effects of a treatment or drug, but they don’t go far enough to identify how a child’s daily activities, routines and relationships are impacted,” she said. “For example, if a child takes a little longer to walk up four steps, how does that affect his ability to keep up with his peers, or play with his siblings or play on playground equipment?”

With support from a National Institutes of Health K01 mentored career development grant, Bendixen is investigating a comprehensive assessment of the impact of illness and disability in children. In her research, she works with parents and children with Duchenne muscular dystrophy, a neuromuscular disease that affects only boys, to understand how the disease’s pathophysiology and clinical tests of strength and functional tasks relate to real-life abilities and participation. Bendixen’s work is done in conjunction with a major NIH-funded study on the use of magnetic resonance imaging to track muscle changes as Duchenne progresses. This study is led by Krista Vandenborne, Ph.D., chair of the department of physical therapy and PHHP associate dean for research, who serves as Bendixen’s primary mentor on her K01 grant.

“This population of boys has fairly severe physical deficits, especially by the time they are 10 to 12 years of age. The data I’ve collected illustrates how not participating in physical activities seriously limits their social participation, and this is an excellent area of intervention,” Bendixen said.

In a second study funded by the college’s Public Health-Health Professions Model Demonstration Projects program, Bendixen is examining social networks of boys with Duchenne muscular dystrophy and how the disease affects who they associate with and the strength of those associations. Her collaborators include college researchers Christopher McCarty, Ph.D., of the department of health services research, management and policy; Consuelo Kreider, M.H.S., of the department of occupational therapy; and Barbara Curbow, Ph.D., Bendixen’s secondary mentor, and Mary Ellen Young, Ph.D., both from the department of behavioral science and community health.

Bendixen hopes that her research will lead to interventions that will involve parents, teachers and classmates to help children with disabilities experience full participation in activities.

“These types of interventions should focus on the connectedness of peer interactions, the quality of interpersonal relationships, and adjustments to the environment to increase social exchanges,” Bendixen said.

“It’s interesting to me that we still have few insights into what social separation personally means for children and adolescents. Life is synergistic and contextual. While this can’t be manufactured in a clinic, it can be evaluated by health professionals.”