Telemedicine Platform Helps Parents Learn to Care for Disabled Kids

Researchers at UCLA are using telehealth to give parents of children with developmental disorders insight into new techniques to improve social skills.

In a year-long pilot program, the researchers are working with several families around the country whose children have been diagnosed with tuberous sclerosis, a rare genetic disorder that causes development issues, including autism. Using telemedicine technology, they’re teaching parents play-based therapy called JASPER, designed to enhance behavioral development.

“We do a very careful assessment of where children are, developmentally, and then train parents to implement this method into their everyday interactions,” Connie Kasari, PhD, a professor of human development and psychology and co-founder of the Center for Autism Research and Treatment at UCLA’s Semel Institute for Neuroscience and Human Behavior, said in a press release. 

The program is one of several designed to use connected health platforms to help parents improve care management at home, with care providers teaching early interventions and care techniques that would otherwise compel parents to drive to a hospital or clinic for treatment. Using telehealth not only saves these families from driving long distances to access care, but gives them an opportunity to participate in care at home, offering earlier intervention and potentially improving long-term clinical outcomes.

For the pilot program, families who are trained by UCLA researchers in JASPER therapy record themselves playing with their children. The parents and their therapists then review those videos on the telemedicine platform, looking for insight into the child’s developmental needs and creating a care plan to address those needs.

“The earlier you can intervene and enrich the child’s environment, the more likely you are to actually exact change in brain development,” Shafali Jeste, MD, a pediatric neurologist, an associate professor of psychiatry, neurology and pediatrics in the David Geffen School of Medicine at UCLA and a principal investigator at the UCLA Center for Autism Research and Treatment, said in the release. “Our unique remote delivery allows families to begin that early intervention from their home, which is really important for those who live far away from major academic research centers.”