Building capacity for leadership in family engagement in neurodevelopmental disability and child health research: A qualitative evaluation of the Family Engagement in Research Leadership Academy

BACKGROUND: The Family Engagement in Research Leadership Academy is a 10-week (30 h), online McMaster University Certificate of Completion course for researchers and family members championing family engagement in neurodevelopmental disability and child health research. The Leadership Academy consists of weekly 2-hour online synchronous sessions, small group mentorship, an individual Leadership Learning Plan, and a 3-minute 'pitch' presentation about a proposed project or personal vision for family engagement leadership. Throughout the Leadership Academy, learners build knowledge in five core competencies of family engagement leadership (self-awareness, communication, empathy and compassion, advocacy, and entrepreneurship) and the skills to apply these competencies at organizational and community levels. The primary aim of this qualitative study was to identify learners' perceptions of the Leadership Academy, and to explore how they were applying family engagement leadership at organizational or community levels.

METHODS: Ten out of 21 learners of the second and third Leadership Academy cohorts (2022-2023) agreed to participate in this study. We conducted semi-structured interviews after completing each course cohort. We analyzed qualitative data inductively using thematic analysis.

RESULTS: Themes were generated related to learners' perceptions of the course and satisfaction: diverse means of learning; sense of community; and positive and supportive learning environment. Learners also reported that they were planning to or were actively applying course learnings to their leadership roles and career development. Learners indicated a desire to stay connected and continue to collaborate after the course.

CONCLUSIONS: The Leadership Academy is a learning experience that has potential to build capacity for family engagement in neurodevelopmental disability and child health research at organization and community levels by training champions in family engagement leadership core competencies and practices and creating a network of leaders.

CLINICAL TRIAL NUMBER: Not applicable.