Waking up to the importance of sleep: Integrating sleep into care for children with cerebral palsy through a 24-hour activity approach

Abstract

Sleep problems are common in children with Cerebral Palsy (CP), and can greatly impact on the health and functioning of the child. Health-promotion strategies and goals for rehabilitation programs for children with CP have primarily focussed on improving daytime functions and activities, while the night is often neglected. Adopting a 24-hour lens with attention for the entire spectrum of activities throughout the day and night, has the potential to advance the rehabilitative care by providing a broader window of opportunity and a more holistic approach towards optimized health and wellbeing of this vulnerable population. Therefore, this thesis aimed to provide a wake-up call on the importance of sleep in the (rehabilitative) care for children with CP. To that aim, a mix of both quantitative and qualitative studies were performed among children with CP, their parents, and the rehabilitation professionals caring for this population. Part I of the dissertation aimed to understand the parental perspectives regarding the care for sleep of their child with CP. The findings of this qualitative study revealed that parents face numerous challenges caring for their child’s sleep and the burden placed on families by sleep problems is underappreciated.

Part II evaluated the care for sleep by assessing the sleep health practices and sleep knowledge among healthcare professionals working in pediatric rehabilitation. The findings emphasize the need to educate and empower rehabilitation professionals with sound knowledge, skills and confidence required to address sleep problems in children with CP and to support their families.

Part III presents an evidence-informed clinical practice guide that encourages healthcare professionals to adopt a 24-hour approach to the care for children with CP and their parents. To this end, several practical tools were developed in close collaboration with healthcare professionals, parents of children with CP and experts, and include The 24-Hour Activity Checklist and a CP-specific 24-hour activity guidelines infographic. The tools offer support to clinicians in identifying and improving 24-hour activity problems and promoting healthy lifestyle behaviours in children with CP. Part III continues with the results of the Sleep section of The 24-Hour Activity Checklist one year after implementation into three pediatric rehabilitation settings in Utrecht, The Netherlands. Results showed that children with CP are more likely to have a sleep problem compared to their typically developing peers; ii) non-ambulatory children with CP are more severely affected by sleep problems, and iii) a large group of parents reports feeling sleep-deprived.

Finally, in Part IV of the thesis, the 24-hour activities (i.e. physical activity, sedentary behaviour and sleep) as well as adherence to the 24-hour activity guideline were measured in ambulatory children with CP. For this observational study, children's 24-hour activities were measured for seven consecutive days using actigraphy. The proportion of children meeting the combined 24-hour activity guidelines was low (5.9%). A follow-up study compared the subjective and device-based measures of sleep in a sample of ambulatory children with CP so as to formulate recommendations for the use of these methods in research and clinical practice.