Barriers and Facilitators to Treating Sleep Problems in Children with ASD: Gathering Parent and Health Care Professional Perspectives Via Online Synchronous Focus Groups

Background:   Sleep problems are prevalent in children with autism spectrum disorder (ASD), occurring in 50-85% (Reynolds & Malow, 2011). Behavioural sleep problems (i.e., insomnia) have a widespread negative impact on children and their families. Although behavioural interventions are recommended to treat insomnia in children with ASD, little is known about parents’ and healthcare professionals’ (HCPs) beliefs about sleep problems in ASD, and access to, uptake of, and implementation/provision of insomnia treatments.

Objectives:   1) To explore barriers and facilitators experienced by parents of children with ASD in access to and uptake of behavioural treatments for children’s insomnia. 2) To explore barriers and facilitators experienced by HCPs in accessing and providing behavioural insomnia treatment. 3) To explore the utility of online, synchronous audio/video focus group methodology.

Methods:  We used a mixed-methods, online focus-group/interview design, recruiting participants from Canadian rural and urban communities. Participants were 22 parents of 4- to 12-year-olds with ASD and behavioural sleep problems (without intrinsic physiological sleep disorders) and 16 healthcare professionals (occupational therapists, clinical psychologists, developmental paediatricians, nurses) who work with children with ASD and sleep problems. Parents and HCPs participated separately in focus groups or individual interviews, which followed semi-structured topic guides focusing on sleep knowledge, familiarity with evidence-based sleep treatment (HCPs only), access to sleep treatment, uptake (parents) and implementation (HCPs) of treatment. Perceived acceptability of an online parent-directed behavioural sleep intervention was the final topic for both parents and HCPs. Participants completed a user feedback survey to assess the utility of the online method. Focus groups/interviews were transcribed and qualitatively analyzed in NVivo using conventional content analysis (coding for key themes). Descriptive statistics were used to characterize the sample. Additional interviews with Board Certified Behaviour Analysts (BCBAs) are in progress (ending November 2015).

Results:   Preliminary coding revealed key themes emerging from both parents and HCPs: 1) sleep problems and treatment are perceived as exceptionally challenging, intensive, involved, and demanding compared to other problems and their treatment; 2) consistency with routines and perseverance are keys to success; 3) the multifactorial nature of sleep problems complicates treatment; 4) treatment must be highly individualized; 5) recognizing sleep’s impact on the whole family is important; 6) awareness of sleep and how to access help is limited. Individual barriers and facilitators were identified for the following topic areas: A. Parents – Seeking and accessing treatment; B. Parents – Uptake/implementation of treatment; C. HCPs – Knowledge about and access to evidence-based treatment; D. HCPs – Providing evidence-based treatment.

Conclusions:   Preliminary results suggest that parents and HCPs endorse common barriers and facilitators to effective treatment of sleep problems in children with ASD. Major barriers are lack of knowledge/awareness and support, and systematic limitations; flexibility, education, and support are major facilitators. Online synchronous audio/video focus groups had utility as a research method, but effectiveness and user experience were subject to factors beyond the researcher’s control (e.g., participants’ internet connections). Results will inform the development of an online behavioural intervention for insomnia, Better Nights, Better Days for Children with Neurodevelopmental Disabilities.