Mapping Stakeholder Perspectives on Engagement in Concussion Research to Theory

Abstract

Background: Involving stakeholders has been acknowledged as a way to improve quality and relevance in health research. The mechanisms that support effective research engagement with stakeholders have not been studied in the area of concussion. Concussion is a large public health concern worldwide with billions of dollars spent on health care services and research with improvements in care and service delivery not moving forward as quickly as desired. Enabling effective stakeholder engagement could improve concussion research and care. Objective: The aim of the study was to identify potential benefits, challenges, and motivators to engaging in research by gathering the perspectives of adults with lived experience of concussion. Methods: A thematic analysis of qualitative responses collected from a convenience sample attending a provincial brain injury conference (n = 60) was undertaken using open coding followed by axial coding. Results: Four themes regarding benefits to engagement emerged: first-hand account, meaningful recovery, research relevance, and better understanding of gaps. Three forces inhibited engagement: environmental barriers, injury-related constraints, and personal deterrents. Four enablers supported engagement: focus on positive impact, build connections, create a supportive environment, and provide financial assistance. Conclusions: Understanding stakeholder's perspectives on research engagement is an important issue that may serve to improve research quality. There may be unique nuances at play with injury-specific stakeholders that require researchers to consider a balance between reducing inhibitors while supporting enablers. These findings are preliminary and limited. Nevertheless, they provide needed insight and guidance for ongoing investigation regarding improvement of stakeholder engagement in concussion research.