Qualitative study on parents’ perspectives of the familial impact of living with a child with autism spectrum disorder who experiences insomnia

Background: Sleep is an essential aspect of life and it is estimated that 40–80% of individuals with Autism Spectrum Disorder (ASD) present with insomnia. Insomnia relates to difficulties initiating and/or maintaining sleep which can be distressing for the child with ASD and their family. Despite the high prevalence of insomnia in children with ASD there is little qualitative data on parents' perspective on the impact it has on the family unit. Methods: This study presents findings from a series of three focus groups representing 15 families of children with ASD who experience insomnia. Focus groups were audio recorded and transcribed intelligent verbatim. NVivo 9 software was used to enable a content analysis. Text was coded and according to its content emerging themes were identified. Six main themes to include anxiety, dietary implications, bedtime routines, social exclusion, familial implications, and educational consequences emerged. Results: The findings are discussed in relation to future considerations that may contribute to the development of best practice for sleep interventions for children with ASD. Conclusions: Qualitative data which considers parents’ perceptions of familial impact of insomnia may provide in-depth information for sleep clinicians working with families which could inform clinical decisions.