Journal Article

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?

Thomson, Donna, Soper, Alice Kelen, Cross, Andrea, McCauley, Dayle, Solomon, Patricia, Putterman, Connie, Rodrigues, Myanca, Gorter, Jan Willem, Chambers, Christine

2025

Overview

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. Plain English summary The Family Engagement in Research (FER) Course is for researchers and family members. Together, they learn how to partner in neurodevelopmental disability and child health research. To make sure the course is helping learners, a study was done from 2018 to 2021. The study included 69 learners (researchers and family members) from six course deliveries. Learners filled out surveys before and after the course. In the surveys, they shared their thoughts on the course itself. They also reported their perceived knowledge, abilities, attitudes, and confidence in family engagement in research. The survey responses were analyzed using statistical tests to see if there were changes from before to after the course and differences between researchers and family members. The open-ended survey questions gave us a better understanding of satisfaction with the course. Findings showed an increase in perceived knowledge, abilities, and confidence in engaging in research. Positive attitudes toward family engagement in research were high and did not change. Learners were satisfied with the course. Overall, the FER Course helps researchers and family members learn how to meaningfully work together in neurodevelopmental disability and child health research.

• Publisher: BioMed Central,BioMed Central Ltd,Springer Nature B.V,BMC
• Subject: Attitudes / Brain health / Brain research / Child health research / Children / Childrens health / Collaboration / Confidence / Continuing education / Data collection / Disability / Educational objectives / Families & family life / Family / Family engagement in research / Family-researcher partnerships / Health aspects / Health care networks / Knowledge / Likert scale / Market surveys / Medical research / Medicine / Medicine & Public Health / Medicine, Experimental / Neurodevelopmental disorders / Online education / Perceptions / Recruitment / Researchers / Training