Background and aims Children with cerebral palsy (CP) and their caregivers often report poor quality sleep. A proportion of sleep problems can be linked to physical care needs associated with CP; need for repositioning, pain and hygiene. Simple but effective changes can be made to care regimes that may reduce sleep disturbance. However, sleep issues and the subsequent sleep solutions are frequently overlooked. The aim of this pilot study is to identify why children with CP and their parents/caregivers are awake at night-time.
Methods Parents of children with severe CP aged between 6 and 10 years were asked to complete a Time Use Diary (TUD) of their child’s night from 6 pm until 9 am for two nights.
Results Eight families returned the study documents, yielding a total of 16 nights of TUD data. Two children slept uninterrupted for both nights. Two children experienced 11 awakenings over the two nights. The remaining 4 children woke 0–2 times across both nights. Waking time ranged from 15 min to 4 h. Reasons for children waking included; need for repositioning or comforting, distress, pain, restlessness.
Conclusion Children with CP and their parents/caregivers wake often and for long periods overnight. The TUD provided rich data in regards to night time awakenings for children with CP and their parents. This data can be used to design sleep interventions to address problematic sleep for this cohort. This study needs to be refined and repeated on a larger scale in order to gain greater breadth of information and validity.