Understanding strengths, weaknesses, opportunities, and threats to organizational-level family engagement in two childhood-onset disability research organizations

Family engagement at a research project-level is well-studied in childhood-onset disability research, yet organizational-level family engagement (e.g., advisory boards, policy review, mentorship) remains less understood. The objective of this organizational research study was therefore to describe (1) how families are currently engaged at two childhood-onset disability research organizations and (2) the strengths, weaknesses, opportunities, and threats (SWOT) to organizational-level family engagement. A qualitative descriptive approach was used, including online surveys, focus groups, and interviews to collect data from organizational leaders, families, researchers, and trainees from two childhood-onset disability research organizations. Structured deductive content analysis using a SWOT matrix was employed to categorize and present the data. Strengths included each organization’s ability to value and evolve engagement practices and dedicate organizational resources to ensure families felt represented and supported. Simultaneously, limited training, financial support, and formal structures to embed families within the organization were noted as weaknesses. Across both organizations, opportunities to increase infrastructure and training were described. Despite organizational efforts, families are not always seen as part of the academic community, which pose threats to meaningfully embedding families at an organizational level. Findings highlight the value that both organizations place on family engagement, where families have been embedded within organizational processes and structures. Several strengths within the organizations were apparent and were matched with need for greater infrastructure, engagement support, and representation of diverse families. Opportunities described included further training and embedding families across the organization. We anticipate that without broader changes in academia, challenges to organizational engagement of people with lived experience will continue. Organizations such as those presented in this paper can support organizational-level family engagement through continued training, sharing current practices, and developing policies and practices other organizations may adopt. Patients and families are more commonly partnering on childhood disability research projects but less commonly partnering at the organizational-level (e.g., advisory boards, policy review, mentorship). We wanted to understand more about this and the strengths, weaknesses, opportunities, and threats to this practice. We asked organizational leaders, researchers and trainees, and family members at two childhood-onset disability organizations in Canada about family engagement practices at the organizational-level. We held interviews and focus groups, and used online surveys to help us explore this topic. We heard that organizations really valued families. Lack of training, financial support, diversity of families, and ways to engage families in the organization were barriers. Increasing infrastructure and training were identified as ways to support organizational-level family engagement.