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Published on: June 16, 2016
Meaningful Engagement in Exercise Intervention Research Involving People with Spinal Cord Injury: Seven Practical
Heather L Gainforth1,2, Alanna Shwed1,2, Alexandra Walters1,2
1Centre for Health Behaviour Change, School of Health & Exercise Sciences, University of British Columbia, Kelowna, British Columbia, Canada.
Introduction:
Exercise intervention research involving people with spinal cord injury (SCI) has often excluded the perspectives and priorities of people with SCI, contributing to tokenism and misalignment between research and community needs. While consensus-based principles emphasize the importance of meaningful engagement, research teams lack concrete guidance on how to operationalize this engagement in practice.
Objectives:
To outline 7 consensus-based "how-to" recommendations that support research teams in meaningfully engaging research users, including people with SCI, throughout the design, delivery, evaluation, and dissemination of exercise intervention research.
Methods:
A multidisciplinary authorship team with extensive experience in SCI research and engagement co-developed the recommendations through a series of collaborative meetings. The team synthesized insights from lived experience, engagement literature, and pragmatic examples. Minimum expectations were defined through internal consensus using an online survey and iterative team discussions.
Results:
Seven recommendations were developed to emphasize flexibility and iteration: (1) adopt a principled and relational approach to engagement; (2) engage early and often with diverse research users; (3) commit to supporting a safe, welcoming, and inclusive environment; (4) establish shared decision-making processes; (5) recognize, compensate, and credit diverse forms of expertise; (6) utilize communication practices that are clear, accessible, and responsive; and (7) regularly reflect on, evaluate, and iterate engagement.
Conclusion:
These recommendations serve as baseline expectations to support research teams in avoiding tokenism and embedding meaningful engagement into exercise intervention research. Implementation requires individual, team, and system-level change. Sustained, non-tokenistic engagement depends not only on procedural guidance but also on institutional supports and shifts in academic culture.
