A pre-post evaluation of the Family Engagement in Research Course: does it increase perceived knowledge, abilities, and confidence in family engagement in neurodevelopmental disability and child health research?

Abstract

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. The first six cohorts of the FER Course (2018–2021) were part of a pre-post evaluation to assess learners’ perceptions and satisfaction of the FER Course, and the impact on their perceived knowledge, abilities, attitudes, and self-confidence in FER. This paper reports on the findings from this pre-post study. Methods: Sixty-nine self-selected researchers and family members enrolled in the course 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 experiences of the course, perceived knowledge, abilities, attitudes towards, and self-confidence in family engagement in research, and overall satisfaction. We conducted Wilcoxon rank sum to compare differences between researchers and family members’ responses about self-confidence to engage, with the Wilcoxon signed rank tests used 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 survey respondents’ perceived knowledge, abilities, and self-confidence to engage in research. Positive attitudes towards FER were rated highly at baseline and post-test, with no significant change. Respondents reported high levels of satisfaction with the FER Course. Conclusions: The FER Course meets the need for training both family members and researchers, so that they are equipped with the perceived knowledge, abilities, and confidence to collaborate in neurodevelopmental disability and child health research.