In November, OAR’s Board of Directors authorized funding for six new applied autism research studies in 2021. These new grants, totaling $240,000, bring OAR’s total research funding to more than $4.2 million since 2002. This is the first of six previews to be featured in The OARacle this year.
Between 50 and 70 percent of children with autism spectrum disorder (ASD) engage in problematic behavior, according to estimates, with approximately one in four meeting diagnostic criteria for a disruptive behavior disorder. In addition to causing stress for parents, other caregivers, and the family as a whole, these behaviors can interfere with children acquiring new skills and building 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 that training can be difficult, especially for families who live in rural areas.
In this OAR-funded research study, 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, will test the feasibility of adapting a parent-training program to telehealth so that families can access it at home. While COVID-19 has made most of us familiar with how telehealth is used for medical and behavioral health appointments, it has been evaluated for interventions for children with ASD and their families in only a handful of studies.
Their goals are to assess:
- The feasibility of delivering a telehealth intervention program to families in rural communities.
- The impact of that modified program on reducing children’s challenging behaviors and improving socially appropriate behaviors.
- The impact of the program on parents’ reported levels of stress and parenting self-efficacy.
The research team will adapt Research Units in Behavioral Intervention Autism Network (RUBI), a program developed specifically for parents of children with ASD, 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 ASD, such as mealtime problems, sleep difficulties, and toileting.
Evaluations have shown that RUBI is superior to psychoeducation in:
- Reducing parent-reported challenging behaviors among their children with ASD
- Improving children’s adaptive functioning
- Reducing parental stress
- Increasing parental sense of competence
The investigators plan to recruit 15 to 20 parent-child pairs from rural areas in Massachusetts, Georgia, North Carolina, and Virginia, including families living in areas designated by Health Services and Resources Administration as “Mental Health Shortage Areas.” Children will be between 3 and 7 years old and parents must have access to high-speed internet. The team will also recruit community behavioral health services providers for focus groups that will explore barriers to providing services via telehealth in rural communities.
Thirteen weekly sessions, lasting 60 to 90 minutes, will focus on a specific training topic. An interventionist on the research team will use didactic instruction, modeling, and video examples to teach behavior management strategies to parents who will be expected to complete assignments between sessions to apply the strategies they learn.
Focus groups of five providers each will convene via Zoom to discuss:
- Unique aspects of and barriers to working with children with ASD and their families in rural areas.
- Acceptability and utility of the RUBI intervention specifically and telehealth generally.
- Related technological and logistical challenges.
The research team will assess the intervention to evaluate:
- Impact on core and associated features of ASD: Parents will complete a questionnaire that measures repetitive behavior, communication, atypical behavior, social reciprocity, and peer interaction.
- Changes in adaptive behavior: Structured interviews will measure adaptive behavior across socialization, communication, daily living skills, and maladaptive behavior.
- Disruptive behavior: The research team will evaluate parent-reported changes in irritability, social withdrawal, stereotypic behavior, noncompliance, inappropriate speech, and daily routines.
- Child outcomes: The team will measure improvement in child behavior and the effects of the intervention on parenting stress and self-competence as well as adoption of the intervention.
They will also interview parents after the final sessions to assess acceptability of the intervention and telehealth format, as well as barriers and facilitators.
The researchers hope that the study results will present preliminary evidence that this telehealth intervention program can provide viable options for rural families, whether at community sites or in their homes. By gathering information regarding barriers and enablers to using the program, the research team will better understand the reasons a family would or would not choose to or be able to participate, such as lack of access to high-speed internet or perception that the intervention would not meet their needs.
If the study outcomes provide evidence that the intervention program is feasible, then the researchers will apply for funding to conduct a larger study.
Providing parents with the skills to address problem behavior and teach their child appropriate replacement behaviors can improve the quality of life for both children with ASD and parents. This intervention program has the potential to provide those skills to parents living in rural areas where accessing training and other related ASD services is difficult if not 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.