Program Delivers Behavioral Sleep Education to Rural Communities

An estimated 1 in 68 children has autism spectrum disorder (ASD), and 50 percent to 80 percent of them sleep poorly, said Beth Malow, M.D., a professor of neurology and pediatrics and director of the Sleep Disorders Division at Vanderbilt University Medical Center.

While academic medical centers commonly provide behavioral sleep education for families of children with ASD, many programs have long waiting lists, Malow told attendees at the American Academy of Sleep Medicine and Sleep Research Society meeting in June. Families with a child with ASD who live in rural communities face the additional challenge of long travel and exposing the child to potentially anxiety-provoking unfamiliar settings.

Malow and colleagues explored the feasibility of providing a sleep education curriculum for parents of children with ASD in three rural Tennessee community pediatric practices. The program was designed to be delivered by nurses and other community health practitioners in one 60- to 90-minute session, plus two shorter follow-up sessions.

The curriculum addresses daytime and evening behaviors to foster good sleep habits, helps parents develop an individualized bedtime routine, and promotes positive parent-child interactions at bedtime and night wakings. Parents receive informational handouts and homework, along with a visual reminder schedule (see example of bedtime routine and visual schedule at left).

To date, 25 families have participated in the program, Malow said, and 19 have completed surveys about the child’s sleep before and after their participation in the program. To provide an objective measure of sleep, children wear actigraphy watches for six weeks, and again at week 16.

Results showed the children, who had a mean age of 7 years, fell asleep faster, with fewer night wakings, and less bedtime resistance than before their family’s enrollment in the program. Parents felt empowered by their success, Malow said, and liked being able to obtain help in their community. Malow is continuing to recruit more families to test the program. ■