Table 2 Suggestions of the paediatric research professionals about the questionnaire

1. The questionnaire should be administered digitally to make it more appealing to children and easier to distribute data to other researchers.

2. The questionnaire should be short, because children and parents are already loaded with questionnaires in research, e.g. about their health status. Questionnaires themselves are often perceived as a burden. They also indicated that the questionnaire should be short, so it does not interfere with their research studies.

3. Parents should also be asked to rate their child’s discomfort to study whether their ratings are similar.

4. The discomfort of individual research procedures should be measured because IRBs often evaluate the discomfort of the various research procedures of a study separately (i.e. component analysis approach).

5. Children do not like to fill in questionnaires that focus only on negative experiences. They should therefore also be asked about positive experience (i.e. whether children liked the research procedures).

6. As children are the subjects who undergo the procedures, they probably have good ideas how to improve these. Therefore, children should be asked about improvements, which is useful for researchers to minimize discomfort in their studies.

7. It is helpful to know whether children would undergo the research procedure in the future to get an impression of the child’s discomfort.