Sleep disturbances in children with cerebral palsy

Abstract

Background Sleep plays a prominent role in a child’s development, health, and wellbeing. Approximately 23-46% of children with cerebral palsy (CP) have been found to experience sleep disturbances compared to 5-30% of children without CP. The impact(s) of unresolved sleep disturbances have been found to extend beyond the child with CP to the whole family. Despite this, there is a paucity of data that focuses on the frequency and nature of sleep disturbances and impact of sleep disturbances from the perspective of children with CP and their families. So, this study aims to address these discrepancies. Aims and Objectives This study aims to: •Systematically identify literature on the impact of sleep disturbances for children with CP, their siblings, and their parents •Estimate the prevalence and nature of sleep disturbances in children with CP aged 3-18 years resident in Northern Ireland •Explore the impact and management of these sleep disturbances on the child with CP, their parents, and siblings. Systematic Search and Review To systematically identify literature on the impact of sleep disturbances for children with CP, their siblings, and their parents, the following electronic databases were searched in June 2021: PubMed (2001- 2021), PsychINFO (2001-2021), Scopus (2001-2021), Science Direct (2001-2021), CINAHL Plus (2001-2021), Web of Science (2001-2021) and the Cochrane Library (2001-2021). A start date of 2001 was selected as this aligned with the date of publication of the ICF framework (WHO, 2001). Studies were included if: 1) they had at least one participant aged 3-18 years with CP, or lived with someone aged 3-18 years with CP, 2) the child with CP reported experiencing disturbed sleep, 3) were published between 1st January 2001 and 25th June 2021, 4) peer reviewed and 5) available in the English language. Methods To estimate the prevalence and nature of sleep disturbances in children with CP, a quantitative online survey was undertaken. Parents of 111 children with CP, aged 3-18 years, resident in Northern Ireland (NI) completed the survey on their child’s sleep. This survey included the validated Sleep Disturbance Scale for Children (SDSC; Bruni et al., 1996) and questions relating to their child’s CP and family sleep. Data were summarised using descriptive statistics. Differences between the study sample and children known to the NICPR were identified using Pearson’s x2 tests and paired t-tests. Multiple regression was used to examine the relationship between sleep disturbances and clinical and demographic characteristics. To explore the impact and management of sleep disturbances on the child with CP, their parents and siblings, families of children experiencing clinical sleep disturbance, as indicated by a standardised of 70+ on the SDSC, were invited to participate in a qualitative online semi-structured interview. Each family interview involved a parent, a child with CP, and a sibling. Interview types were verbal, written or proxy depending on the family member’s preference, age, communication style and cognitive ability. Interviews were transcribed verbatim and inductive thematic analysis was undertaken using line by line coding to identify key themes. Rigour was established using member checking, confirmatory co-coding with the research team, triangulation of multiple family member perspectives, and the incorporation of rich and thick descriptions. Results A total of 19 studies were identified in the systematic search and review that met eligibility criteria. Eighteen of these studies were quantitative cross-sectional studies and one was a qualitative exploratory study. These studies confirmed the lack of research exploring the lived experience of sleep disturbances for multiple family members. Additionally, these studies identified a negative impact on a family’s psychological wellbeing, physical health, social participation, quality of life and health related quality of life. Prevalence of clinical sleep disturbance for the survey sample (children aged 3-18 years and resident in Northern Ireland) ranged from 43% to 74% depending on definition of clinical sleep disturbance applied. The proportion of children experiencing clinical sleep disturbance in each of the SDSC subscales was also similarly high with almost half the sample reporting a clinical level of sleep disturbance in Disorders of Initiating and Maintaining Sleep. Most parents felt their own sleep was affected by their child’s sleep (86%) and sibling sleep disturbance was reported by 38% of parents, with 6% of siblings being involved in night-time support. Six themes were identified from the qualitative semi-structured interviews exploring the sleep experiences of families: 1) “It’s hard to know”; The challenges of identifying a sleep disturbance; 2) “So many things”; Personal and environmental factors influence sleep disturbances 3) “I’m tired and grumpy with friends”; Sleep disturbances impact mood and relationships 4) “Tiredness just makes anything that was already physically hard, much worse”; Sleep disturbances impact physical health 5) “Stuff is harder to do”; Sleep disturbances impact activities and participation in daily life and 6) “We don’t know what is out there”; Parents seek support to manage sleep disturbances. Parents were impacted by all themes, children with CP were impacted by themes 2, 3, 4, and 5, and siblings were impacted by themes 2, 3, and 5. Conclusions The very high prevalence of sleep disturbances in the study sample is concerning. Sleep needs to become a priority for healthcare professionals and asked about at every point of contact. Further, multi-disciplinary and multi-agency family-centred support(s) for children with CP, siblings and parents experiencing the wide-ranging consequences of sleep disturbances are vital.