Abstract
INTRODUCTION: This qualitative study investigates families’ experiences of having a child with neurodisability (ND) and sleep problems, and is a subset of a broader mixed-method study entitled Early Sleep Interventions to Improve Outcomes in Children with Neurodisability METHODS: We surveyed 294 parents of children with ND and sleep problems. This qualitative study focuses on the free-text responses to questions about what parents consider to be important areas for research priority, and how they and their family members are affected by their child with ND’s sleep problems. We conducted a reflexive thematic analysis of parents’ responses. FINDINGS: We identified five key themes in parents’ reports. Firstly, child sleep problems are compounded by physical medical conditions and have adverse effects on child functioning. Secondly, child sleep problems negatively impact the whole household, with heightened parental concern for siblings’ sleep and wellbeing. Thirdly, parents experience detrimental impacts on their emotional, mental, physical, social, and work-related wellbeing. Fourthly, parents primarily seek out medical intervention to address their child’s sleep problems but also emphasise the importance of understanding their individual child’s needs. Finally, parents desire better sleep service supports, resources, sensitivity, and awareness of sleep issues among non-specialists. DISCUSSION: These findings raise concerns for the health and wellbeing of children with ND and sleep problems and their parents and families. There is a need for improved awareness, education, and treatment of sleep problems in this group, which would not only benefit the children themselves, but also their parents and siblings.