Sleep disturbances in children with Cerebral Palsy
Research type
Research Study
Full title
Sleep Disturbances In Children Who Have Cerebral Palsy
IRAS ID
244718
Contact name
Claire Kerr
Contact email
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
1 years, 7 months, 26 days
Research summary
Children and young people who have Cerebral Palsy (CP) are at increased risk of experiencing sleep disturbances. Current literature suggests 23% of young people with CP could have reduced quality or quantity of sleep, compared to 5% of those without this medical condition.
This research will look at the prevalence (number of people affected), impact and current management of sleep disturbances in children and young people with Cerebral Palsy. The study will be carried out in two stages and will last thirty-six months.
In stage one approximately 800 families with children with CP aged 3-18 years will be invited to complete a questionnaire. This questionnaire will ask about sleep (using a recognised tool), the child's CP and wider family life (see questionnaire pack V1). Stage two will investigate the current impact and management of sleep disturbances, by inviting 10 family groups, i.e. the parent, child with CP and sibling, to complete a semi-structured interview on their lived experiences of sleep (see child interview schedule V1, young person interview schedule V1 and parent interview schedule V1).
Lay Summary of results
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 little 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 aimed to (1) systematically identify literature on the impact of sleep disturbances for children with CP, their siblings, and their parents; (2) estimate the prevalence and nature of sleep disturbances in children with CP aged 3-18 years resident in Northern Ireland; and (3) explore the impact and management of these sleep disturbances on the child with CP, their parents and siblings.
Systematic Search and Review: 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. 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. 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.
REC name
London - Bloomsbury Research Ethics Committee
REC reference
18/LO/2024
Date of REC Opinion
26 Nov 2018
REC opinion
Favourable Opinion