Delivery and evaluation of simulations to promote authentic and meaningful engagement in childhood disability research

Abstract

Abstract Background In 2019, our interdisciplinary team of researchers, family members, and youth co-designed four simulation training videos and accompanying facilitation resources to prepare youth, family members, trainees, and researchers to build the knowledge and skills to engage in patient-oriented research (POR) authentically and meaningfully. Videos covered challenges in aspects of the research process including (1) forming a project team; (2) identifying project objectives and priorities; (3) agreeing on results; and (4) carrying out knowledge translation. Methods The purpose of the study was to deliver four simulation training videos across 2 two-hour facilitated workshops with researchers, trainees, and family partners. We evaluated whether the training videos and facilitated discussion of the simulations helped to improve knowledge and attitudes about authentic and meaningful partnership in research and self-perceived ability to engage in POR. An explanatory sequential two-phase mixed methods design was used. Phase 1 (quantitative) included two training workshops and a pre/post-training survey. Phase 2 (qualitative) included two qualitative focus groups. Results of each phase were analyzed separately and then combined during interpretation. Results Sixteen individuals (including researchers/research staff, trainees, family members, clinicians) took part in this research study. Overall, participants were highly receptive to the training, providing high scores on measures of acceptability, appropriateness, and feasibility. While the training videos and facilitated discussion of the simulations were found to increase participants’ knowledge and ability to engage in authentic and meaningful POR, we found no significant change in attitude or intent. Recommendations about the simulation content and delivery were provided to inform for future use. Conclusions The simulations were found to be a positive and impactful way for collaborative research teams to build knowledge and ability to engage in authentic and meaningful POR. Recommendations for future work include covering different content areas with varying levels of nuance; and offering the training to stakeholders in a variety of roles, such as those higher-ranked academic positions.

Keywords

• Simulation
• Evaluation
• Patient engagement
• Family engagement
• Patient-oriented research
• Childhood disability