Bedtime Stories: An exploratory study of the reasons for, experience and impact of, sleep disturbance for children with cerebral palsy and their parents

Abstract

BACKGROUND: Cerebral palsy (CP) is a motor disorder associated with many comorbidities. Published evidence to date suggests that sleep problems are common in children with CP. Chronic sleep problems are often reported in the clinical setting. However, they are often poorly understood and therefore not well managed. This study aimed to explore the frequency and type of sleep problems in children with CP, the experiences of the children and their parents regarding sleep problems, and the impact of those sleep problems on the children and their parents.

METHODS: An exploratory mixed methods sequential design was chosen. Critical social theory was used as a theoretical framework. This qualitatively driven study had three phases: qualitative scoping interviews, a quantitative survey that included the use of validated sleep assessment tools, and follow up qualitative interviews. Participants were parents or caregivers of children aged six to twelve years with CP from Victoria, Australia. The data derived from thematic analysis in Phase One was used to inform the design of Phases Two and Three.

RESULTS: Phase One consisted of qualitative semi-structured interviews of nine parents. Thematic analysis identified two major themes: Seeking Solutions and Having to Survive. The key finding of this phase was that parents were asking for help with sleep problems, but often did not receive effective advice or treatment. Phase Two involved an online quantitative survey using the REDCap platform, which collected 126 complete data sets. Sleep problems were reported by 46% of the cohort. The parents of children with a high score on a sleep assessment tool (indicating a sleep problem) had a higher mean score than parents of children without sleep problems (mean difference:12.1 (95%CI:9.2-15.0) (p<0.005)). This indicates that parent sleep is affected by child sleep. Parents found finding effective sleep solutions challenging.

Phase Three involved qualitative semi-structured interviews of 19 parents. The thematic analysis identified seven major themes: 1) My Child Doesn’t Fit into the Box, 2) A Mother’s Ears are Always On, 3) Sleep Disturbance is like Water Torture, 4) Sleep is One of Many Spot Fires, I Put it on the Backburner, 5) Luck, Money or Jumping Up and Down, 6) There is Never One Silver Bullet and 7) Help: The Earlier the Better. The key finding for this phase was that parents of children with CP often described their child’s needs being different to what is provided for by systems and services. This difference created significant challenges when seeking health solutions.

DISCUSSION: The mixed methods interpretation of the three phases of research resulted in six main findings: 1) finding effective sleep solutions can be challenging, 2) sleep problems are prevalent and persistent but are often untreated, and sleep is not a priority, 3) sleep problems have a significant negative impact on parent sleep and daily life, 4) sleep problems are often complex, 5) sleep problems can improve, and 6) overnight care is often the responsibility of mothers.

Clinical recommendations arising from this research include: 1) adopting an individualised approach to addressing sleep problems, 2) elevating sleep as a clinical priority for both parents and clinicians, and 3) incorporating nurses and allied health professionals to be both advocates and providers of sleep health care, for children and families. Where sleep problems are refractory to treatment, respite from overnight care needs to be prioritised urgently. Applying a critical social theory lens to the data revealed two dominant ideologies that may contribute to the persistent presence of sleep problems for children with CP: 1) the dominance of the biomedical model and 2) dominant ideologies around motherhood.

This research thesis applied an innovative approach to answering the research questions, which resulted in novel findings. This study has addressed a significant gap in the literature and will be used to make transformative clinical change and likely improve sleep for children with CP and their parents.