Among families of children with autism spectrum disorder, perceived need for medical and support services differ among caregivers of different racial and ethnic groups, even after adjusting for child and family socioeconomic and other characteristics, according to a new study.

OT_News-01These differences in turn might affect how caregivers prioritize and seek care for their children, according to investigators with Thomas Jefferson University’s Jefferson College of Health Professions in Philadelphia. Researchers hope the study’s findings, which were published Feb. 1 in a Pediatrics supplement, will inform family-centered communications and support.

“Our team discovered a number of differences in perceived needs for medical, therapeutic and family support services,” first author Teal W. Benevides, PhD, MS, OTR/L, an assistant professor of occupational therapy in Jefferson College of Health Professions, said in a news release. “Our study suggests that future research should aim to understand how a family’s cultural beliefs and expectations impact care. Providers working with children with autism should identify caregiver beliefs about treatment to better tailor recommendations and referrals for service.”

For the study, the researchers examined 5,178 records in the 2005-06 and 2009-10 National Survey of Children with Special Health Care Needs datasets to look for associations between racial and ethnic group and perceived service needs while controlling for certain factors.

After adjusting for child and family characteristics, the team’s analyses found:

  • Caregivers of Hispanic children reported less need for prescription medications compared with caregivers of white, non-Hispanic children with ASD.
  • Caregivers of black, non-Hispanic children with ASD reported less need for prescription medications and for child and family mental health services than caregivers of white, non-Hispanic children.
  • Both English-speaking Hispanic caregivers and black, non-Hispanic caregivers reported greater need for occupational therapy, speech therapy and physical therapy than white, non-Hispanic caregivers.

“I hope our future research can delve into the culture and belief systems of families as they navigate the services available to them and their children,” Benevides said in the release. “That is the next step in ensuring culturally sensitive care for children with autism and their families.”

This study was supported by a grant from the Maternal and Child Health Research Program, Maternal and Child Health Bureau, Health Resources and Services Administration, U.S. Department of Health and Human Services, and a Dean’s Research Award from the Jefferson School of Health Professions, both awarded to Benevides.

Thomas Jefferson University OT students James Cassel and Katie Moran participated in administrative preparation of the manuscript for publication and received federal work study compensation as graduate research assistants for their work.

Study abstract: