News and Knowledge

In 2014, OAR’s Board of Directors authorized funding for seven new applied autism research studies in 2015. This additional $210,000 in research grants brings the total funds awarded by OAR to over $3.3 million since its first grants in January 2003. This is the third of seven previews that will be featured in The OARacle over the next few months.

When we don’t sleep well, especially over a long period of time, our quality of life plummets. For families that include a child with an autism spectrum disorder (ASD), getting the kind of sleep necessary to deal with everyday life and the challenges that ASD presents can be difficult at best. Why? Because most children with autism spectrum disorders (ASD) have sleep problems that impact their ability to adapt to daily routines.

Education for parents can help to change that. In fact, in-person educational sessions for parents have improved children’s sleep and families’ quality of life. For other health conditions, online education and interventions that use technology have proven to be effective. This led OAR-funded researcher Cristine Roberts, PhD RN, an assistant professor at the University of Missouri-Kansas City School of Nursing and Health Studies, to ask, “Could the benefits of face-to-face education on sleep extend to autism parents through online sessions? If so, it could serve greater numbers of families more easily and conveniently and provide education to families who otherwise may not have access?”

Study Design

That is what Dr. Roberts plans to find out through her study, “Online and In Person Parent Education/Support for Families of Children with ASD and Insomnia.” Over the next year, she will examine the effect of a parent education program that employs both online educational sessions and face-to-face sessions.

Seventy-two sets of parents will be assigned to small groups according to the ages of their children, either those ages 4 to 7 or those ages 8 to 12. Participating parents will be enrolled in either:

• Two face-to-face interactive workshops lasting two hours each with phone support follow-up during the subsequent four weeks, or

• Two online podcast sessions, also two hours per session, with four weeks of online blogging by family caregivers moderated by professional support

The face-to-face sessions will be held at the university in small classrooms equipped with computers and projectors. The university will establish and maintain online learning platforms for the online groups. Participants will be involved in the study procedures for about three months.

The first session will be delivered via podcast for those groups participating online. The first session for both sets of parents will include introductions and descriptions of each child’s sleep problems. Parents will receive information about adequate sleep including amount and bedtime habits and environment as well as explanation of bedtime routines, use of visual schedules, timers, and causes of insomnia. Parents in both groups will be expected to complete homework that includes completing a checklist and recording nightly routines.

All participants will post their homework online before the next session and share potential strategies and/or successes through blogs.

During the second session, Dr. Roberts will share homework results, including what worked and what didn’t, in the classroom for the face-to-face participants and via podcast for the online participants. She will also present strategies for what to do when your child wakes at night or early in the morning, how to teach children to soothe themselves back to sleep, bedtime passes and reinforcement, and strategies for improvement.

Evaluation

Dr. Roberts and her research team will evaluate the children’s sleep and the families’ quality of life using tools that include quality of life and sleep habits questionnaires, a fatigue assessment scale for parents, an instrument that records sleep patterns and activity, and a checklist for parents to indicate which sleep strategies they used and how effective those strategies were.

Applying the Findings

If the online sessions are as effective as face-to-face instruction, the online program could then be used in a variety of settings as a distance-learning tool. A long-term goal of the research is to develop convenient and effective educational interventions targeted at families to decrease sleep problems for children with ASD. The availability of effective modules for distance education will provide a convenient way for families to receive education and instruction without the need to arrange childcare, pay for transportation, and find the time for a face-to-face workshop. It also makes education more accessible to more families at a lower cost.

Online technology also offers the potential for families to expand their support network well beyond where they live. Those who participate in the online programs can continue to stay in touch with each other, lend mutual support, and share information and successful strategies well after the formal instruction ends.