Disclaimer: This article has been elaborated from the original Dutch one: “Kinderen als medeonderzoeker in wetenschappelijk onderzoek” 26-05-2020, by Margriet Bos.
Actually it is bizarre. Because we want to know how diseases develop and improve care, we conduct scientific research. Also with children. But what do adult researchers actually know about children? Malou Luchtenberg is a medical researcher and invites children to become fellow researchers as if they were educated adults.
According to the "International Convention on the Rights of the Child," children are allowed to have a say in everything that concerns them. This also applies to scientific research. But… ”So little is known about how to involve them, that often children are not involved,” says medical researcher Malou Luchtenberg.
She wants to give children a voice in scientific research and eventually let them participate as fellow researchers.
“Children are not small adults,” she thinks. “By that I mean that the brain of children is really different from that of adults. They often see many more options and have much less tunnel vision than we do. And everyone makes choices and makes decisions from their own perspective. ”
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She was not only interested in medicine. "I am also interested in law and ethics." She also took courses in those disciplines. "Because of the opportunities I got, I ended up in this project."
In the first phase, she visited sick children at home; in the second phase of her research, she involved healthy children from 8th grade and a few slightly older children. They thought it was "super fun to do something different than school."
Children get a lot in return
“The children who participate get a lot in return,” says Luchtenberg. ” They learn about the medical world and scientific research, and they reflect on what health is. In a conversation at a primary school, children were really affected when I showed interviews from sick children on video. They want to know how these children are doing, they show a lot of empathy. I think that is a nice side effect of this research. ”
Not small adults
Luchtenberg hopes that her research will receive broad attention. “The point is that you really involve the target group, so that the results can be connected with practice. The target group knows best what is important for the patient. Children ask different questions than adults; they often understand questions differently than adults do. ”
This research is therefore truly pioneering and presents the necessary dilemmas. For example: should you train the children to participate in the analysis? “Not too much,” Luchtenberg thinks, “because then you run the risk of the children becoming small adult researchers.” And that is precisely not the intention.
[. . . ] Even the 16-18 year olds are already starting to look like adults, she says. “Our preliminary analysis of the differences in interpretation of children and adults shows that children find details important, where adult researchers mainly generalize and categorize. So children make sure we don't forget the details and stay close to the practice. ”
So happy to participate!
She notices that her research receives a lot of attention. Like a note with "Dear Malou, I found it very nice and it was super fun." Last year she was in Scotland for an internship when she received a call from an 8th grader at primary school who had heard of her research.
"Hopefully I am not too late yet," said this 11-year-old, "because I want to participate!" This girl has now become a regular fellow investigator in Luchtenberg's research. And she is certainly aware of her meta-role when she explains to others that she is "a fellow researcher in research to research."
Innovation Award Research 2019
At the UMCG New Year's meeting in January 2020, Malou Luchtenberg received the Innovation Prize for Research from the Dean Marian Joëls. Watch the video here.
This post was written by Miriam Boersema, funding advisor at UMCG
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