25138
Barriers and Facilitators to Accessing and Providing Treatment for Insomnia in Children with Neurodevelopmental Disorders: Parent and Health Care Professional Perspectives
Sleep problems are highly prevalent in children with neurodevelopmental disabilities (NDD), such as Autism Spectrum Disorder (ASD), Attention-Deficit/Hyperactivity Disorder (ADHD), Fetal Alcohol Spectrum Disorder (FASD), and Cerebral Palsy (CP), ranging from 50-95%. Behavioural sleep problems, called insomnia, are most common. Treating insomnia is critical, as it has widespread negative effects on both child and family functioning. Although behavioural treatments for sleep problems are recommended, little research exists on parents’ and health care professionals’ (HCPs) insomnia-related treatment access and service utilization for children with NDD.
Objectives: To identify and explore: 1) barriers and facilitators experienced by parents of children with ASD, ADHD, FASD, and CP related to seeking, access, uptake, and implementation of behavioural treatment for children’s insomnia; and 2) barriers and facilitators experienced by HCPs in accessing and providing behavioural insomnia treatment for children with NDDs.
Methods: Using a qualitative online audio/video synchronous focus group and interview design, we recruited Canadian parents of 4- to 12-year-old children with formal diagnoses of ASD, ADHD, FASD, or CP, and the HCPs who work with them (occupational therapists, clinical psychologists, developmental paediatricians, nurses, social workers, physicians, and Board Certified Behaviour Analysts). Data collection is complete for ASD groups (parent n = 20; HCP = 21), and other NDD groups will be completed in fall 2016 (target n = 7 for each of ADHD, FASD, and CP parent and HCP groups), with total anticipated N = 82 (see Table 1 for breakdown). Parents and HCPs participated separately in focus groups, following a semi-structured topic guide focusing on sleep knowledge, access to sleep treatment, and treatment uptake (parents only) or familiarity with and implementation of evidence-based treatment (HCPs only). Perceived acceptability of an online parent-directed behavioural sleep intervention was also assessed. Focus groups/interviews were transcribed and qualitatively analyzed in NVivo using conventional content analysis (coding for key themes). Comprehensive lists of barriers and facilitators were derived from the data and grouped into key theme categories.
Results: The following key themes emerged from parents and HCPs across all four NDDs: 1) Sleep problems and treatment are exceptionally challenging and intensive compared to other problems / treatment due to high impact on family, multifactorial and complex causes, need for individualized treatment, and sleep being but one of many challenges competing for parents’ attention. 2) Limited awareness and knowledge about sleep and how to access help for both parents and HCPs. 3) Consistency with routines and perseverance are keys to success. 4) Sleep-related beliefs and attitudes influence parents’ treatment seeking and HCPs’ willingness to treat.
Conclusions: Contradictions were inherent in both HCPs’ approach to treatment and parents’ perspectives on effectiveness, with both reporting high perceived need for individualization of treatment, yet describing use of similar behavioural strategies across NDD diagnoses. This suggests the appropriateness of a transdiagnostic approach to insomnia treatment, with accommodation for NDD symptoms as needed. Results are informing the modification of an online parent-mediated intervention for sleep problems in neurotypical children, Better Nights, Better Days (BNBD), into an intervention for children with NDD (BNBD-NDD).