Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2023 Jul 18;9(1):54.
doi: 10.1186/s40900-023-00468-9.

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

Samantha K Micsinszki  1   2   3 , Nadia L Tanel  3 , Julia Kowal  3 , Gillian King  2   3   4 , Dolly Menna-Dack  3 , Angel Chu  3 , Kathryn Parker  3   5   6 , Michelle Phoenix  7   8   9
Affiliations

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

Samantha K Micsinszki et al. Res Involv Engagem. .

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: Authentic; Childhood disability; Evaluation; Family engagement; Meaningful; Patient engagement; Patient-oriented research; Simulation.

Plain language summary

In 2019, our team of researchers, family members, and youth worked together to design and develop four digitally recorded simulation videos that can be used to train youth, caregivers/families, trainees, and researchers to engage with each other in research so that all parties feel supported and valued. This paper describes how the four simulation videos were packaged in the training and then delivered to 16 participants (researchers, trainees, and caregivers/families). We used multiple ways to evaluate the videos and training, including a survey before and after the training, focus groups with participants after the training, and written reflections shared by the training facilitators after the training was finished. We found that the simulation videos increased participants’ knowledge on engagement and their self-reported ability to engage in authentic and meaningful patient-oriented research. Participants rated their belief in engagement and their intent to engage in collaborative research highly at the pre-test and this remained consistent at the post-test. Participants liked that the simulations focused on challenges in research engagement and that the training was offered to researchers and family partners together. They provided valuable feedback on what we should change about the simulations, including the content, which should have less exaggerated lessons and to add more topics. They also suggested it would be helpful if stakeholders other than just the research team complete the training in the future, especially those who are in higher positions of academic power.

PubMed Disclaimer

Conflict of interest statement

The authors have no competing interests to disclose.

Similar articles

See all similar articles

Cited by

References

    1. Canadian Institutes of Health Research. Strategy for Patient-Oriented Research Patient Engagement Framework. Published online 2014. https://cihr-irsc.gc.ca/e/documents/spor_framework-en.pdf
    1. Kirwan JR, de Wit M, Frank L, et al. Emerging guidelines for patient engagement in research. Value Health. 2017;20(3):481–486. doi: 10.1016/j.jval.2016.10.003. - DOI - PubMed
    1. Camden C, Shikako-Thomas K, Nguyen T, et al. Engaging stakeholders in rehabilitation research: a scoping review of strategies used in partnerships and evaluation of impacts. Disabil Rehabil. 2015;37(15):1390–1400. doi: 10.3109/09638288.2014.963705. - DOI - PubMed
    1. Harrison SL, Brooks D. Active patient engagement: long overdue in rehabilitation research. Physiother Can. 2015;67(4):305–307. doi: 10.3138/ptc.67.4.GEE. - DOI - PMC - PubMed
    1. Guise JM, O’Haire C, McPheeters M, et al. A practice-based tool for engaging stakeholders in future research: a synthesis of current practices. J Clin Epidemiol. 2013;66(6):666–674. doi: 10.1016/j.jclinepi.2012.12.010. - DOI - PubMed

LinkOut - more resources