Not another website full of information that nobody actually reads. However, it is a practical tool for healthcare providers and for adolescents/young adults with cerebral palsy and parents of children with cerebral palsy (CP). To quickly share information with each other and start a conversation. That is the new website cpenontwikkeling.nl, which was launched today. Made for and by the end users.
“Research and innovation can no longer stand alone, you now have to make what matters and you have to do that together with experts and professionals,” says Maureen Bult of UMC Utrecht. As a project manager she gave together with Marjolijn Ketelaar (project leader), Jeanine Voorman (child rehabilitation doctor WKZ) and Marike Willems (patient organization CP Nederland) shape the creation of the new website cpenontwikkeling.nl for young people/young adults with cerebral palsy, parents of children with CP and healthcare professionals. People with CP have a postural and movement disorder caused by damage to the brain around birth or in the first year of life. It can also affect the way people communicate, eat, and learn. In the project there was intensive cooperation with a working group in which young people with CP, parents and professionals worked together. “That cooperation was the common thread in our project. In which the end users are really the creators. As a result, the knowledge from the research has really been molded into a form that meets the needs of the end users and ‘the person as a whole’ has become an even more important message.”
Not just invented
The information on the website cpenontwikkeling.nl did not come about just like that. For twenty years, the development of children and young people with cerebral palsy was followed in the PERRIN study, a national research program in the field of pediatric rehabilitation, led by researchers from UMC Utrecht and De Hoogstraat Rehabilitation. “That means that we have an overview of the development in various life areas from 0 to 35 years. When we think of CP, motor skills are often central, but PERRIN has provided much more new knowledge about the development of daily functioning and participation of these young people. We have converted that knowledge into information on the new website, divided into different domains such as self-care, social relationships, education and work, communication, and also motor skills,” says Maureen. In addition to valuable information about CP in the various domains, people share their experiences on the website and there is a joint decision tool, which can serve as input for conversations between patient and healthcare professional.
The need for information is great
Parents, children and young people have a great need for information about CP and development. big. Marike Willems, association manager of CP Nederland, the patient association for people with CP, says: “Parents of a child with CP, and later the young person themselves, have many questions about how their child will develop and what the future will look like. ‘What will he be able to do, what can he learn?’ There are many things that are uncertain if your child has CP, and then it is very nice if there is scientific knowledge that can provide more insight into this in an accessible way. That was the basis of this project.”
Something you can put on your desk
The new website is made for young people themselves, but also for parents and healthcare professionals, all looking at the same scientific knowledge to make the translation: what can you do with it for your own development or for the development of your child or your patient. Care professionals were therefore expressly included in the development process through a sounding board group with all professional associations in child rehabilitation. Maureen: “We always tested: is this something that you as a professional group can handle? In the interview tool, therefore, a conscious choice was made for the modellingprinciple, also for the healthcare professional: how do you do this? Of course, healthcare professionals are trained and experienced in entering into discussions about this, but the need for such a practical tool emerged in the sounding board group. Something you can put on your desk, so to speak, during the consultation.” All information on the website can be easily emailed or forwarded, so that healthcare professionals can also forward this after a consultation.
Start the conversation
Now that the new website is up and running, the message is clear: start talking to each other. Parents and healthcare professionals, for example, in the early years surrounding diagnosis, and the many questions that this raises about the future of their child. And also young people who want to know more about what their disability means for their future. About living on your own, work and study, relationships. There is no standard prescription for supporting someone with CP. “If the website is viewed a lot and the conversation tool is downloaded and forwarded, then our mission has been accomplished,” says Maureen. “That means that young people and parents have read, thought about and discussed information about cerebral palsy and development with their healthcare professionals.”
Treatment and investigation of cerebral palsy
The UMC Utrecht has expertise in various areas related to CP. For example, there is special care for children who are born in the special intensive care unit (NICU) and who have an increased risk of CP. They are seen several times in the first year of life in the outpatient clinic in order to make a diagnosis as early as possible and to initiate targeted treatment, for example when it comes to arm/hand function. The aim is that parents are informed in good time and that the family is well supported.
A lot of research is also being done to prevent the risk of CP and to reduce the consequences of brain damage for children and parents. Daily care is closely related to the research being done on CP. This happens within the UMC Utrecht Brain Center along with the Knowledge Center Rehabilitation Medicine Utrecht. Within the research, specific attention is paid to physical health (24-hour activities with exercise and sleep), cognition/coping and support for families. All research is done in a multidisciplinary manner, in close collaboration with parents and children.
Read more about treatment and research for cerebral palsy >
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