Delivery and evaluation of simulations to promote authentic and meaningful engagement in childhood disability research.

In 2019, our team of researchers, family members, and youth worked together to design and develop four digitally recorded simulation videos that can be used to train youth, caregivers/families, trainees, and researchers to engage with each other in research so that all parties feel supported and valued. This paper describes how the four simulation videos were packaged in the training and then delivered to 16 participants (researchers, trainees, and caregivers/families). We used multiple ways to evaluate the videos and training, including a survey before and after the training, focus groups with participants after the training, and written reflections shared by the training facilitators after the training was finished. We found that the simulation videos increased participants' knowledge on engagement and their self-reported ability to engage in authentic and meaningful patient-oriented research. Participants rated their belief in engagement and their intent to engage in collaborative research highly at the pre-test and this remained consistent at the post-test. Participants liked that the simulations focused on challenges in research engagement and that the training was offered to researchers and family partners together. They provided valuable feedback on what we should change about the simulations, including the content, which should have less exaggerated lessons and to add more topics. They also suggested it would be helpful if stakeholders other than just the research team complete the training in the future, especially those who are in higher positions of academic power.