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Cartoons help children decide on participation in research

Children are often able to decide for themselves whether they want to take part in medical research. In order to be able to make an informed decision, they need clear information. PhD candidate Ronella Grootens set a good example and created a cartoon story. PhD defence 6 December.

Research with children is important

In October, the Dutch Lower House adopted new legislation permitting medical-scientific research on children. This research is vital because many medicines intended for children are not properly researched. According to the government, children from 12 to 16 years are perfectly capable of deciding - along with their parents - whether or not they wish to take part in such research.  

Difficult to understand

Researcher Ronella Grootens at Leiden University studied how we can best support children in making such a decision. Her research shows that the legally required information that is currently available is often not aimed at children. The reading level of this material is apparently even higher than the recommended level for adults. The lack of illustrations also makes it difficult for children to understand the texts. Altogether, these factors hamper children's ability to decide about participating in scientific research. 

Children are the experts

Grootens, together with illustrator Irene Cécile, developed a cartoon about a non-existent illness: the green nose flu. They also worked with the end-users: children, parents, doctors, scientists and nurses. 'The children are the experts; they know what they like reading and what's easy to understand,' Grootens commented. By creatinigthe cartoon and the tests together, the information matches the children's own experience. They understand better what the material is about, which helps them reach a decision. 

Empowering children

‘All too often we say that we want to involve children, but we don't make the effort to really achieve that,' Grootens says. 'We want to use this cartoon to empower children. By giving them clear information, children have a real chance of being able to join in the discussion. We take very seriously the role of children in decisions that are important for them.' 

Ronella Grootens will defend her PhD based on this research on 6 December in Leiden. The new cartoon will be presented, and will be available immediately for use in Dutch hospitals.  

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