News and Knowledge

In November 2020, OAR’s board of directors authorized funding for a one-year study of a telehealth parent training program that parents could access at home, Feasibility of Parent Training via Telepractice for Rural Families of Children with Autism. As the research proposal noted, between 50% and 70% of autistic children engage in problematic behavior with approximately one in four meeting diagnostic criteria for a disruptive behavior disorder. Disruptive behavior is not only stressful for family members and other caregivers, but it can also be an obstacle to children’s ability to acquire new skills and build relationships.  

Behavioral training for parents has been shown to reduce children’s disruptive behavior as well as parental stress. That training is available in clinical settings, but accessing it can be difficult, especially for families who live in rural areas. Researchers Cynthia M. Anderson, Ph.D., BCBA-D, senior vice president and director of the National Autism Center at May Institute, and Ryan J. Martin, Ph.D., NCSP, research scientist at the Center, adapted Research Units in Behavioral Intervention Autism Network (RUBI), a program developed specifically for parents of autistic children, for use as a telehealth program. RUBI trains parents in skills to reduce problem behaviors and increase pro-social behaviors with components that address specific issues related to autism, such as mealtime problems, sleep difficulties, and toileting.  

Their goals were to evaluate the: 

• Feasibility of a modified RUBI program, delivered via telehealth (RUBI-T) to families in rural Appalachia.  
• Impact of RUBI-T on reducing children’s challenging behaviors and improving socially appropriate behaviors. 
• Impact of RUBI-T on parents’ reported levels of stress and self-efficacy. 

Methodology

The researchers convened focus groups of community behavioral health services providers to discuss: 

• Unique aspects of and barriers to working with autistic children and their families in rural areas. 
• Acceptability and utility of the RUBI-T intervention specifically and telehealth generally. 
• Related technological and logistical challenges. 

They also recruited seven families to participate in the intervention. The children ranged in age from 3 to 7 years old. Six mothers and one father participated as the primary parent participant. Six completed the RUBI-T program; the seventh parent completed five sessions.  

In 13 weekly sessions, lasting 60 to 90 minutes each, an interventionist who was a member of the research team focused on a specific training topic. Using didactic instruction, modeling, and video examples, the interventionists taught behavior management strategies to parents who also completed assignments between sessions to apply the strategies they learned. 

Results

Efficacy: From pre-evaluations to post-evaluations, participating children demonstrated reduced challenging behavior and modest improvement in adaptive skills. However, as the researchers noted in their final report, none of the changes were statistically significant.  

Parents demonstrated improved stress levels as well as an improved sense of parenting competence. However, these improvements were also not statistically significant.  

Adoption: Interviews with parents uncovered six broad themes:  

1. Autistic children have diverse and multifaceted needs. 
2. Parents of autistic children experience psychosocial challenges of their own. 
3. Being a parent of an autistic child requires additional support. 
4. Barriers to accessing services exist at both the family and systemic level. 
5. Telehealth is a promising way to address barriers but not a panacea. 
6. Parent education, resources, and self-advocacy facilitate access to services.  

Interviews with providers echoed the same themes: 

1. Families with autistic children experience unique challenges and require significant support. 
2. Families face multiple barriers to accessing support. 
3. Providers face multiple constraints when providing services. 
4. Telehealth is acceptable but comes with challenges. 
5. Parent engagement hinges on contextual fit and therapeutic alliance.  

Parents’ ratings on social validity measures were consistently positive, indicating that the intervention was beneficial for their child and there were no negative side effects. All of the parents said they would be willing to use the procedures in their everyday lives. Parents also positively rated RUBI-T procedures such as homework assignments, handouts, and video vignettes. All of the parents said they would recommend RUBI-T to other parents.  

All of the parents also indicated they had a high level of trust in their clinician and felt comfortable meeting with their clinician through telehealth. One parent found the technology complicated to use while another noted that it would be easier to receive services in person. The remaining parents stated they would be likely to recommend telehealth services to another parent.  

As far as their future use of telehealth, results were mixed. While four parents agreed that telehealth services were “just as good” as in-person services, two stated they were unsure. Three said they would likely choose telehealth over in-person services in the future; two were unsure; and one would not.  

Maintenance: Only two families were available for assessment at the three-month follow up. In one of those families, the child’s scores were slightly worse than their post-participation scores but still better than their original pre-participation scores. Similarly, the child’s parent reported greater stress than post-participation, but less stress than at pre-participation.  

The other family had more consistent positive results with the child demonstrating stable or continued improvement from post-participation scores across most outcomes. Similarly, this child’s parent reported less stress and a greater sense of competence than at post-participation. 

Unexpected Outcomes: The researchers noted that the therapeutic relationship between the provider and the parent is a potential barrier to engagement with a telehealth intervention. Participating providers emphasized that clinicians should take the time to get to know the family and build trust as part of the intervention process.  

The researchers also did not expect that some parents would need to reschedule their sessions and were willing to do that rather than miss them and that many of the sessions took more than an hour to complete. Those outcomes led them to believe that RUBI-T may need to be extended beyond the 16 to 20 weeks it was designed to take.  

Findings

Telehealth can be an effective way to increase access to behavioral parent training, which can reduce disruptive behaviors and improve adaptive skills. The study also provided evidence of parents’ capability, with support and coaching, to apply principles of applied behavior analysis to reduce their children’s disruptive behavior and teach them new, more appropriate skills, thereby reducing their stress levels and increasing their sense of competence.  

It also has implications for teachers and other caregivers, providing a low-cost, easy-to-learn intervention that can be delivered via telehealth, which allows them to reach a larger number of families. 

Next Steps

The researchers believe that this study’s results are promising enough to warrant a larger randomized controlled trial of RUBI-T and are in the process of submitting a proposal for grant funding to the Department of Defense Autism Clinical Trial Award. 

This study has the potential to help more families access behavioral interventions, especially those living in places where participating in in-person interventions may be difficult or even impossible.  

Sherri Alms is the freelance editor of The OARacle, a role she took on in 2007. She has been a freelance writer and editor for more than 20 years.