Parent-Based Sleep Education in Autism: A Community-Academic Research Partnership

Background: Sleep disturbance affects 50-80% of children with autism spectrum disorder (ASD). Behavioral sleep education for children with sleep disturbance is currently provided largely within academic medical centers, which often include long waiting lists for this service.

Objectives: Our study aims to determine the feasibility of providing sleep education training to parents of children with ASD in diverse community settings in relation to more traditional university-based settings.

Methods: We included three Middle Tennessee pediatric practices in this study—Mercy Community Healthcare, Rivergate Pediatrics, and Goodlettsville Pediatrics, along with community therapists. The following elements comprised our study: (1) Recruitment and consent of participating families, as well as instruction in study procedures such as actigraphy; (2) Collection of baseline data; (3) Therapist training and fidelity; (4) Delivery of sleep education to families; and (5) Collection of intervention data.

Our sleep education curriculum was delivered in one 60-90 minute session with 2 follow-up sessions and covered appropriate sleep habits, including construction of an individualized bedtime routine and optimization of parent-child interactions. Paired t-tests were used to compare data pre and post intervention. We used on-line surveys through Research Electronic Data Capture (REDCap) to reduce family burden.

Results:  Recruitment for our study is on target, with families expressing support for having study procedures done at their pediatricians’ office, rather than driving to the medical center. All of our therapists reached fidelity on mock sessions and actual parent education sessions. To date, 21 families have participated with 16 completing baseline and intervention data. Children with ASD had a mean (standard deviation) age of 7.0 (2.9) years. Improvements were noted in the following Children’s Sleep Habits Questionnaire (CSHQ) subscales: sleep onset delay (p=0.000), bedtime resistance (p=0.001), sleep duration (p=0.000), night wakings (p=0.048), and parasomnias (p=0.030). CSHQ subscales in sleep anxiety (p=0.226), sleep disordered breathing (p=0.382), and daytime sleepiness (p=0.257) did not show improvement. The Family Inventory of Sleep Habits (FISH) also improved (p=0.002). Actigraphy measures showed improvement in sleep onset delay with a mean of 38.6 (18.4) minutes pre- intervention and 33.3 (21.4) post- intervention, but did not reach significance (p = 0.313).

Conclusions: This study shows that sleep education typically housed within specialized medical settings can be extended to community practitioners with minimal to no background in sleep, allowing families to receive behavioral sleep education in familiar locations as part of their ongoing care and with potentially shorter wait times. Partnering with community practitioners to deliver such education to families provides an opportunity to broaden access to sleep therapeutics in the community, while forging collaborations between sleep medicine physicians, primary care providers, and community therapists.