“I was awarded the prize for involving children in my research. I got children and young people involved as co-researchers in analysing interviews with children. We performed the study as a pilot first with young children of the age nine to thirteen and tested the method with adolescents of the age 16-18. This latter group was able to use the experience they gained by being involved in this project for their graduation dissertation, so that was a win-win situation. The award I won was meant to be used to continue this project and present the results of the research projects, together with the children, at the International Children’s advisory Network Congress in Paris. Because of the pandemic, the congress was switched to online, much to our disappointment. Luckily, we were able to rent a B&B from where we presented our poster remotely, and I was able to join their final presentation at their school and at the UMCG. Further, the Innovation Prize allowed me to be involved as (co) supervisor of a Phd in this subject. ”
From a ‘not unless’ to a ‘yes if’ mentality
The idea of patient participation in both research and care trajectories is slowly gaining ground. But to involve children is still a novelty. “If someone would ask me if we should involve children in a project, my answer is that we need to go from a ‘not unless’ to ‘yes if’ mentality. There should not be a reason to exclude in advance the involvement of children, because that would put children, and patients as a whole, at a disadvantage. Obviously there are some barriers to the participation of young people, time being the most important one. But I notice on a daily basis that as a researcher and doctor I am better able to empathise with children, and at the same time I acknowledge I will always have to ask children for a different perspective. I believe this understanding is very valuable.”
It is not hard to see why involvement of children in research is still an unorthodox principle. What about the academic skills needed to do research? Expecting children to have research skills is not fair, according to Malou: “Young people should take part in the project from their perspective as young person, not as an adult researcher. We, researchers, are not always working to show we are good researchers, so why should we demand proof from children that they are able to represent their perspective? We want to uphold quality of research, but how do we define quality? Is very thorough but irrelevant research of high quality? If we expect the children to score in the same way researchers do, then the project has already failed before it starts.”
Children participation toolkit
Unorthodox as the idea may still seem, a bit of a transformation certainly seems to be under way. Throughout the Netherlands, children advisory boards have been instated. According to Malou, this should be accompanied by a change in mentality as well. “There are challenges to this. If children disagree, are we going to listen to that? If not, we may as well stop doing it altogether.”
The lessons Malou learned about the involvement of children and adolescents in research projects is something she is more than happy to share with other researchers. “With the input of young people and experienced professionals, I developed a toolkit (The 9 C’s) on what to pay attention to when involving children. This toolkit is generic, but researchers should always be aware that every research project is different, and therefore demands a different approach. It is a complex process, which makes it both challenging and rewarding.”
Interested in more about the 9C Toolbox could be found in Malou Luchtenberg's thesis.