Sleep disturbances in Cerebral Palsy
This page contains the results of Dr Mary-Elaine McCavert's PhD on sleep disturbances in children with CP. The text below will tell you about international research on sleep experiences and their impacts on a sample of children with CP and their families in Northern Ireland.
The work involved virtual workshops ( described below). During these workshops families told us that resources for their GP, educational staff and other families with CP would be helpful. The families chose the content and design of the resources. You can view and/or download the resources by clicking on the relevant image below.
Resource for educational providers
Why sleep and CP?
Sleep is very important. It keeps our body healthy and our mind well. Many children with CP do not sleep all night, maybe because of pain, health conditions, or difficulties moving. If other people at home are helping their family member with CP at night, they might have sleep problems too.
Have any studies looked at sleep and CP?
To date, there have been no studies about sleep and CP for those living in the UK. Studies from other countries tell us how sleep problems can influence our mind, body, relationships (with friends, family and loved ones), what we can do in a day and our general happiness.
How did we study sleep for children with CP in Northern Ireland?
After reviewing the published literature, we surveyed families of children with CP living in Northern Ireland about their child’s CP, their sleep and their family’s sleep. One hundred and eleven families took part in our survey. In addition to the surveys, we interviewed ten families in depth about their sleep. Parents, children with CP and their siblings took part in the interviews.
We also asked with families who took part in the research to tell us how we could support sleep in Cerebral Palsy (CP) in Northern Ireland. Six families (6 parents and 3 children with CP) took part in 4 virtual workshops. In the first workshop, families discussed the study’s findings and shared their experiences of sleep problems, you can watch this video by clicking here
What did we find out about sleep and CP for children in Northern Ireland?
Our review found less than 25 published papers researched sleep and CP. Sibling sleep problems were not examined in any of these papers and most of these papers used surveys to collect information rather than direct lived experience. This means research at that time did not fully understand the complexity, diversity, or richness of family sleep problems in CP.
Our survey showed that almost half of children with CP had sleep disorders. Most parents felt their own sleep was affected by their child’s sleep problems. Over a third of families felt the sleep of brothers and sisters was also affected by their sibling with CP’s sleep problems. A small number of brothers and sisters helped their sibling with CP when they woke up at night.
Our interviews showed us how people live with sleep problems and how these affect the whole family. When families talked with Mary-Elaine about their sleep, they said:
1) “It’s hard to know”; e.g., it is difficult to recognise if any of their family had sleep problems
2) “So many things”; affect family sleep e.g., personal and environmental factors
3) Sleep problems can mean families are “tired and grumpy…”
4) Sleep problems can “make anything that was already physically hard, much worse”; e.g., physical health
5) Sleep problems can mean “stuff is harder to do”… e.g., taking part in daily life and activities.
6) Parents wanted sleep support but did not “know what is out there” to help.
What did we do with this information?
We presented our findings at local and international conferences for healthcare professionals and families
INTERNATIONAL CEREBRAL PALSY RESEARCH SYMPOSIUM 19-05-23
Queen's University Belfast Showcase 2021
Cerebral Palsy Intergrated Pathway (CPIP) 2021
European Academy of Childhood Disability: 33rd Annual Meeting
THANK YOU!!!
We want to thank all the families that took part in this research. A special thanks to the families that led the development of the resources for their time, energy and expertise.
We would also like to acknowledge the support of the Department for the Economy who supported the PhD Studentship for this research and the John Glover Memorial Award who funded the development of the resources.