Abstract
Children with Cerebral Palsy (CP) account for the largest group of children with a physical disability in the UK. Despite evidence that sleeplessness occurs commonly in children with CP, there is little in-depth research on their sleep. Previous research has relied on the viewpoints of parents, mainly mothers. No research has explored sleep from multiple family members’ perspectives within the same family. This study explores the meanings, organisation and practice of sleep for children with CP, their siblings and their parents. This qualitative study of 10 families involves 10 children with CP (aged 6-13 years), 7 siblings (from 5 families) and 17 parents. Influenced by existing literature on involving disabled children in research, qualitative semi-structured interviews are supplemented by data from children’s self-directed photography and sleep questionnaires, 2 week sleep diaries and actigraphy for all participants. Findings emphasise the importance of the social and family context of sleep. For children, the bedtime routine was significant with reference to their practice of sleep and differences were highlighted dependent on age and severity of CP. Night-time interactions with parents were important for children with severe CP experiencing sleeplessness. For some children, the use and location of their bedrooms enabled the attainment of privacy and autonomy. However, differences, regarding these factors, were found between children with severe CP and those without. Night-time parental monitoring of children with severe CP was common but methods differed depending on a number of intersecting factors including severity of the child’s CP, location of bedrooms and co-existing health issues. Different methods of monitoring had varying degrees of impact on parents’ sleep and on privacy for the child with CP. Co-sleeping was engaged in by a small number of parents with their disabled child at specific times and used as a strategy to protect the sleep of family members.