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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

Year: 2026

Type: article

Abstract: 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. 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. 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. 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. Not applicable. The Family Engagement in Research Leadership Academy is a 10-week online course that brings together researchers and family members who want to improve how families are involved in neurodevelopmental disability and child health research. The course includes weekly online sessions, small-group mentoring, a Leadership Learning Plan, and a short presentation where each learner shares a project idea for family engagement leadership. Throughout the course, learners develop knowledge and skills in five core skills of family engagement leadership (self-awareness, communication, empathy and compassion, advocacy, and entrepreneurship). They learn how to apply these skills to support change within organizations and communities. This qualitative study explored how learners from the course felt about the Leadership Academy and how they were using the knowledge and skills gained. Learners from 2023 to 2024 were invited to participate in an interview after the course. These interviews were used to identify common feelings about and experiences of the course. Ten learners participated in the study. They were all very satisfied with their experience in the course, highlighting the strong sense of community, positive and supportive learning environment, and the variety of learning activities. Many learners said they were using or planning to use the knowledge and skills they gained to guide their leadership roles or future career paths. They also expressed a desire to stay connected with one another after the course. Overall, the Leadership Academy appeared to help build leadership skills that support family engagement leadership within organization and community settings.

Source: Research Involvement and Engagement

DOI: 10.1186/s40900-026-00945-x