The impact of sleep disorders of children with severe medical complexity on their caregivers’ sleep: a perspective from two pediatric palliative care centers

Abstract Purpose This study aimed to investigate sleep patterns in children with severe medical complexity (CMC) eligible for pediatric palliative care (PPC) and to evaluate the specific impact of these patterns on their caregivers’ sleep quality and quantity. Methods A multicenter descriptive and exploratory study was conducted across two PPC services in Italy, enrolling 15 children with high-complexity needs and 26 caregivers. Participants completed a dedicated questionnaire and a seven-day sleep diary to record data on sleep duration, nocturnal awakenings, medication use, and the caregivers’ estimated sleep loss. The relationship between the child’s sleep variables and the caregiver’s lost sleep hours was analyzed using Spearman rank-order correlation. Results Children reported a median nocturnal sleep duration of eight hours, yet 86.6% experienced nocturnal awakenings. Conversely, caregivers reported a median sleep duration of six hours, estimating a median loss of two hours of rest per night. Statistical analysis revealed no significant correlation between the child’s total sleep duration and the caregiver’s sleep loss. However, a strong, statistically significant correlation was found between the number of the child’s nocturnal awakenings and the caregiver’s hours of sleep lost. Conclusion Caregivers of CMC experience significant sleep deprivation, which is primarily driven by sleep fragmentation due to the child’s need for nocturnal assistance rather than the child’s total sleep duration. Even when children achieve a normal quantity of sleep, the frequent interruptions required for care severely compromise the parents’ ability to rest, highlighting the need for targeted support interventions.