Meaningful Engagement in Exercise Intervention Research Involving People with Spinal Cord Injury: Seven Practical...

Area of Science:

• Rehabilitation research
• Community-based participatory research
• Health equity

Background:

• Exercise intervention research for spinal cord injury (SCI) has historically excluded the perspectives of individuals with SCI.
• This exclusion leads to tokenism and a misalignment between research priorities and community needs.
• Existing consensus principles highlight meaningful engagement, but practical guidance for research teams is lacking.

Purpose of the Study:

• To present seven consensus-based recommendations for meaningfully engaging research users, including people with SCI.
• To provide practical, "how-to" guidance for research teams throughout the research lifecycle.
• To address the need for concrete strategies to operationalize meaningful engagement in SCI exercise intervention research.

Main Methods:

• A multidisciplinary team with SCI research and engagement expertise co-developed recommendations.
• Insights were synthesized from lived experience, engagement literature, and practical examples.
• Consensus on minimum expectations was achieved through surveys and iterative discussions.

Main Results:

• Seven flexible and iterative recommendations were developed.
• Key recommendations include: principled engagement, early and frequent involvement of diverse users, inclusive environments, shared decision-making, equitable recognition of expertise, clear communication, and regular evaluation.
• These recommendations aim to embed meaningful engagement and avoid tokenism.

Conclusions:

• The recommendations serve as baseline expectations for meaningful engagement in SCI exercise research.
• Successful implementation requires individual, team, and system-level changes.
• Sustained, non-tokenistic engagement necessitates institutional support and cultural shifts within academia.