Synopsis of resource
In the Netherlands a “care pathway” for children with CP has been developed in collaboration with clinicians, parents and researchers. This care path focuses on
- The screening of children with CP in the age of 0-8 years old,
- The identification of children with, or at risk for, problems with sleep, nutrition and/or physical activity, and
- Providing care and support for these children and their families.
However, there is a clear lack of evidence-informed resources which can help inform and guide parents of children with CP. The Center of Excellence for Rehabilitation Medicine Utrecht (the Netherlands) has recently launched a three-year innovation project to investigate how screening for and, if necessary adjustments in sleep, nutrition and physical activity, contribute to the well-being and functioning of children (aged 0-8) with CP and their families. One of the deliverables of this project is an online KT resource aimed to provide useful information related to nutrition, sleep and physical activity to parents.
In June 2019 this KT resource, that has been developed in co-creation with parents, clinicians and researchers, has gone live on the website of the Patient Organisation in The Netherlands (CP-Nederland, formerly known as the BOSK). This online knowledge translation resource can be seen as an avenue to share information related to sleep, nutrition, and physical activity for parents and health care professionals. For the website (in Dutch) see: https://www.bosk.nl/cerebrale-parese/fysieke-gezondheid/
Many parents have found the tools very helpful. Since we want to help as many parents as possible, we were able to translate (with the help of the CP Alliance in Australia) two tools. We started with the tools related to nutrition. Hopefully, we will be able to translate more tools in the near future.
Olaf Verschuren, PT, PhD, is an Assistant Professor at the Center of Excellence for Rehabilitation Medicine, University Medical Center Utrecht and De Hoogstraat Rehabilitation, Utrecht, The Netherlands. His research focuses on pediatric rehabilitation, specifically on the physical function and physical health of children and adolescents with Cerebral Palsy (CP). The overall goal of his innovative research is to improve the physical health of people with CP. Therefore, the last three years he has broadened his research areas; besides physical activity, he also focuses on sleep and nutrition. Managing these three components, preferably in a comprehensive fashion, will afford a vitally important opportunity to promote the health of people with CP across the lifespan.
Video: Nutrition for children with cerebral palsy