Background: The Family Engagement in Research (FER) Course launched in 2018 for researchers and family members to co-learn the principles and practice of engagement in neurodevelopmental disability and child health research. As part of the start-up period, six cohorts (163 participants) were enrolled. To ensure the FER Course was meeting its aims to increase knowledge, skills, and confidence in FER, a pre-post evaluation was conducted on the FER Course from 2018-2021.
Methods: Sixty-nine participants completed pre-and post-evaluations; satisfaction was evaluated after the course only (n=96). Data collection involved surveys with 10-point Likert Scale questions about participants’ experiences of the course, participants’ knowledge, abilities, attitudes towards, and self-confidence in family engagement in research, and overall satisfaction. Stata Statistical Software was used to conduct Wilcoxon rank sum to compare differences between researchers and family members’ responses and the Wilcoxon signed rank tests to evaluate change in outcomes from before to after the course. Open-ended survey responses were analyzed descriptively.
Results: There were statistically significant increases in participants’ knowledge, abilities, and self-confidence to engage in research. Positive attitudes towards FER were consistently rated highly pre- and post- evaluation with no significant change observed. Participants reported high levels of satisfaction with the FER Course, in particular with the group projects.
Conclusions: The FER Course meets the need for training both family members and researchers, so that they are equipped with the knowledge, abilities, and confidence to collaborate in neurodevelopmental disability and child health research.