The family engagement in research course: impact on family engagement in neurodevelopmental disability and child health research two years later

PURPOSE: This study explored the 2-year impacts of the Family Engagement in Research (FER) Course on researchers' and family members' engagement in neurodevelopmental disability and child health research.

MATERIALS AND METHODS: A qualitative study was conducted with graduates from the first six cohorts of the FER Course. Data were collected through semi-structured interviews and focus groups two years after taking the course. Thematic analysis was used to analyze qualitative data from transcripts.

RESULTS: Twenty-six learners (family members and researchers) participated in the 2-year follow-up interview or focus group. The majority (85%) reported increased involvement in FER since they completed the course, which included (i) engaging in research and (ii) advocating and championing FER. Learners reported how the course supported their research engagement, which included: (i) feeling confident and empowered; (ii) acquiring new knowledge and skills; (iii) embracing new perspectives; and (iv) growing a network for FER.

CONCLUSIONS: The FER Course is a training initiative that enables and sustains research engagement over time. Training for both researchers and family members is essential for building capacity in FER in neurodevelopmental disability and child health research.