Bedtime stories: sleep problems for children with cerebral palsy and their parents

Written by Sacha Petersen, Developmental Disability and Rehabilitation Research, Clinical Sciences, Murdoch Children's Research Institute.

Sleep problems are common for children with cerebral palsy (CP). Typically, a child who does not sleep well, in turn, has a parent who does not sleep well. There is very little research in the area of sleep for children with CP.    

We know that sleep problems can be varied and complex and can have detrimental effects on health and quality of life.

After many years working alongside a paediatrician who made sleep a priority in clinic, I became aware that not all doctors prioritised sleep as part of routine care. 

As a result, I led a small pilot study that became the platform for a PhD project within the Developmental Disability and Rehabilitation Research Group at MCRI, as an affiliate of the Centre of Research Excellence in Cerebral Palsy and a student at the University of Melbourne. 

The study aims to determine the type and prevalence of sleep problems for children with CP and their parents, and to explore the experience and impact of those sleep problems.   

This will hopefully lead to interventions that might improve sleep for children with CP and their parents.

The first phase of this study has just wrapped up. Nine parents were interviewed about their experience of sleep problems. They discussed the significant impact of sleep deprivation on their lives, and how they experienced difficulties in finding health care professionals to help them with sleep problems.  

The experience of these parents has informed the planning of the next phase of the research, which is about to launch. For Phase 2, parents of children with CP aged 6-12 years will be asked to complete an online survey about sleep. 

We will then interview parents who reported poor and good sleep in their surveys for Phase 3 of the study. We hope that by talking to the poor sleepers we might find out what has happened that has contributed to poor sleep. And by talking to good sleepers, we may find why some children sleep better.

Sacha is supported by the Windermere Foundation Doctoral Scholarship, an Australian Government Research Training Program, a scholarship from the Nurses Memorial Centre and the Vera Scantlebury Brown Child Welfare Scholarship.

Sacha is also a clinical nurse consultant in the department of neurodevelopment and disability at The Royal Children's Hospital.