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Caregiver Perceptions of Needed Services for Autism Treatment Differ Among Racial and Ethnic Groups

02/01/16

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(PHILADELPHIA, PA) - Among families of children with autism spectrum disorder (ASD), 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. This may in turn affect how caregivers prioritize and seek care for their children. Researchers published these findings in a Pediatrics supplement and hope the study will inform family-centered communications and support.

“Our team discovered a number of differences in perceived needs for medical, therapeutic and family support services,” said Teal W. Benevides, PhD, MS, OTR/L, first author and Assistant Professor of Occupational Therapy in Jefferson College of Health Professions. “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.”

The researchers examined 5,178 records in the 2005-2006 and 2009-2010 National Survey of Children with Special Health Care Needs datasets to examine associations between racial and ethnic group and perceived service needs while controlling for certain factors.

In analyses which adjusted for child and family characteristics, the team 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, speech, 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,” Dr. Benevides said. “That is the next step in ensuring culturally-sensitive care for children with autism and their families.”

Conflict of Interest: None of the authors of this study have any financial, legal, or other conflicts of interest.

Funding and Contributions: This study was supported by grant R40MC26194-01-02 from the Maternal and Child Health Research Program, Maternal and Child Health Bureau (Title V, Social Security Act), Health Resources and Services Administration, Department of Health and Human Services and a Dean’s Research Award from the Jefferson School of Health Professions, Thomas Jefferson University, Philadelphia, PA, both awarded to Teal Benevides (PI). James Cassel, OTS and Katie Moran, OTS (Thomas Jefferson University) participated in administrative preparation of the manuscript for publication and received federal work study compensation as graduate research assistants for their work.

Article Reference: Benevides, T.W., Carretta, H.J, & Mandell, D.S. Differences in Perceived Need for Medical, Therapeutic, and Family Support Services Among Children with ASD. Pediatrics. Feb 2016, 137 (Supplement 2) S176-S185. DOI: 10.1542/peds.2015-2851P

 

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Gail Benner
Thomas Jefferson University
Gail.Benner@Jefferson.edu
Office: 215-955-2240