The impact of active research involvement of young children in the design of a new stereotest

BACKGROUND: Although considered important, the direct involvement of young children in research design is scarce and to our knowledge its impact has never been measured. We aim to demonstrate impact of young children’s involvement in improving the understanding of a new 3D eye test or stereotest. METHODS: After a pre-measure of understanding was taken, we explored issues with the test instructions in patient and public involvement (PPI) sessions where children acted as advisers in the test design. Feedback was collected via observations, rating scales and verbal comments. An interdisciplinary panel reviewed the feedback, discussed potential changes to the test design, and decided on the implementation. Subsequently, a post-measure of understanding (Study 1–2) and engagement (Study 3) was collected in a pre-post study design. Six hundred fifty children (2–11.8 years old) took part in the pre-measure, 111 children (1–12 years old) in the subsequent PPI sessions, and 52 children (4–6 years old) in the first post-measure. One hundred twenty-two children (1–12 years old) and unrelated adults took then part in a second series of PPI sessions, and 53 people (2–39 years old) in the final post-measure. Adults were involved to obtain verbal descriptions of the target that could be used to explain the task to children. RESULTS: Following feedback in Study 1, we added a frame cue and included a shuffle animation. This increased the percentage of correct practice trials from 76 to 97% (t (231) = 14.29, p < .001), but more encouragements like ‘Keep going!’ were needed (t (64) = 8.25, p < .001). After adding a cardboard demo in Study 2, the percentage of correct trials remained stable but the number of additional instructions given decreased (t (103) = 3.72, p < .001) as did the number of encouragements (t (103) = 8.32, p < .001). Therefore, changes in test design following children’s feedback significantly improved task understanding. CONCLUSIONS: Our study demonstrates measurable impact of involvement of very young children in research design through accessible activities. The changes implemented following their feedback significantly improved the understanding of our test. Our approach can inform researchers on how to involve young children in research design and can contribute to developing guidelines for involvement of young children in research.