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Researchers pioneer telemedicine training for rural parents of children with autism

Mon, 04/14/2014

LAWRENCE — In 2004 University of Kansas researchers Linda Heitzman-Powell and Jay Buzhardt had the bold idea of training parents of children with autism to use an intervention based on the science of applied behavior analysis (ABA) to help them increase their children’s independent skills and reduce problem behaviors.

What’s more, the training would be rigorous, and it would be long-distance: coaching via live interactive television along with online educational modules covering the concepts and principles of behavioral intervention. The highly effective treatment for children with autism is endorsed by the American Academy of Family Pediatrics, the American Psychological Association, the National Institute of Mental Health and the U.S. surgeon general.

“Autism spectrum disorders, now estimated to affect one in 68 children, are just as common in rural America,” said Heitzman-Powell, research assistant professor, “but ABA-trained professionals are rare.”

While involving parents in training is critical, according to the National Research Council, little is known about how to make training resources available to families in remote areas or with limited capacity to travel to facilities for one-on-one practice and coaching, said Heitzman-Powell, a licensed psychologist and a board-certified behavior analyst.

Now, the researchers have published the results of their initial study of the feasibility of training parents through their Online and Applied System for Intervention Skills (OASIS) in Focus on Autism and Other Developmental Disabilities.

Parents increased their knowledge of ABA strategies and concepts by an average of 39 percentage points and improved their implementation of these strategies with their children by an average of 41 percentage points, said Buzhardt, associate research professor who employs technology to help make evidence-based practices accessible to rural and underserved populations.

What’s more, the initial OASIS project saved the four families participating in the study more than 9,000 driving miles compared to the miles they would have driven to a regional medical center in Kansas City area.

Since the first small feasibility study, an evaluation of OASIS with close to 40 families across Kansas showed that parents learned and retained skills as precise as collecting and analyzing data and how to use it for making decisions.

“Pre- and post-test results on knowledge and using skills was impressive, as was parent satisfaction, said Heitzman-Powell.

OASIS has continued past the end of the research project: The Center for Child Health and Development at the University of Kansas Medical Center in Kansas City has begun offering OASIS as a clinical service.

The KU team also is translating and adapting OASIS for the Hispanic population, and researchers from Poland and Italy have expressed interest in translating the training program.

The researchers are evaluating the short and long-term effects of the strategies parents learned through OASIS on their children’s language and social skill development. They will also assess the long-term effects on the families and children from their initial study.

As to the importance of OASIS, Heitzman-Powell notes that approximately half of children with ASD who are diagnosed early and receive appropriate treatment will mainstream in a public school setting without an aide. “But without appropriate intervention, very few will achieve this level of success,” she said. 



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