Medical research with children is important for improving child healthcare. But what is the best way to go about this? Ask the children, says Malou Luchtenberg: ‘Children know more about how they experience their health and illness than anyone else. They can also tell you what they consider to be important. Researchers should involve children in their research right from the start to ensure that their needs and wishes are met.’
Helping other children
For her research, Luchtenberg asked children what they considered to be important when they take part in research. She interviewed 23 children and young people between the ages of nine and eighteen, asking them about their experiences. ‘The children told me that they were keen to take part in research because they wanted to help other children in the future, because they hoped that it would help them or to help their doctor.’
Luchtenberg discovered that it is particularly important that children trust the researcher: ‘This makes them feel more comfortable, enables them to ask questions and puts them in a better position to decide whether or not to take part in the research. They also want to hear the results and about how they contributed to the research.’ She found it striking that children want to show that they are not only patients, but that they also do things to help others.
Children as co-researchers
‘We must not treat children like mini-adults but should try to adjust our thinking to their perspective’, says Luchtenberg. So, she asked other children to be her co-researchers and to help her to analyse the interview recordings. She noticed that the children enjoyed learning the new skills that this entailed and that they were happy to contribute to the research and reflect upon illness and health in their direct environment.
Children put more emphasis on details, which shows researchers what is important to them, according to Luchtenberg: ‘For example, they have different ideas about the tips that other children give researchers. Such as making the research more enjoyable, or by giving children something to do in the waiting room. Adults may not consider this to be very important but it could be the decisive factor in a child’s decision about whether or not to take part next time.’
The article published in KennisInZicht, the UMCG’s academic magazine, provides more information about Malou Luchtenberg’s research (in Dutch).
Malou Luchtenberg (1991, Amsterdam) studied Medicine at the University of Groningen and followed extracurricular course units in the Faculty of Law. She followed her PhD programme alongside her medical degree programme (MD/PhD track). In 2019, she was awarded a degree in Medicine and won the UMCG Innovation Prize for her idea about giving children and adolescents a role as co-researchers in medical research. The title of her thesis is: ‘A Network of Exchange: Towards the empowerment of children in medical research.’ Luchtenberg is currently working as a medical doctor and researcher in the UMCG’s Beatrix Children’s Hospital.