Related Publications

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The following publications have resulted from our work co-developing, co-implementing, and co-evaluating the IKT Guiding Principles. Further information is also available via Open Science Framework.

 

document iconDownload the IKT Guiding Principles Postcard (pdf)

document iconTélécharger le dépliant des principes directeurs de l’ACi (pdf)

 

Academic Publications

document iconShining a light on the road towards conducting principle-based co-production research in rehabilitation

In this article, we describe some fundamental principles essential to conducting co-production research (sharing power, relational resilience, and adopting a learning mindset) and provide tangible, practical strategies, and processes to engage these values. In doing so, we hope to support rehabilitation researchers who wish to engage in co-production to foster a more equitable, ethical, and impactful collaboration with people with lived experience and those involved in their circle of care.

Bourke JA, Bragge P, River J, Sinnott Jerram KA, Arora M and Middleton JW (2024) Shining a light on the road towards conducting principle-based co-production research in rehabilitation. Front. Rehabil. Sci. 5:1386746. doi: 10.3389/fresc.2024.1386746


 

document iconThe co-development and evaluation of an e-learning course on spinal cord injury physical activity counselling: a randomized controlled trial

Health, fitness and lifestyle professionals can play important roles in promoting physical activity in groups at risk of developing an inactive lifestyle, such as people with spinal cord injury (SCI). Tailored counselling is a promising tool to promote and improve physical activity levels. To support professionals to effectively have a conversation about physical activity with clients with SCI, evidence-based training and resources are needed. This project aimed to (1) co-develop an e-learning course on best practices for SCI physical activity counselling and, (2) examine the effectiveness and usability of this course.

Hoekstra F, Gainforth HL, Broeksteeg R, Corras S, Collins D, Eleftheriadou E, Gaudet S, Giroux EE, Kuipers LS, McCallum S, Ma JK, de Passillé E, Rakiecki D, Rockall S, van den Berg-Emons R, van Vilsteren A, Williamson M, Wilroy J, Martin Ginis KA (2024). The co-development and evaluation of an e-learning course on spinal cord injury physical activity counselling: a randomized controlled trial. BMC Med Educ. https://doi.org/10.1186/s12909-024-05141-7 


 

document iconIncluding People with Spinal Cord Injury in Research as Participants, Partners, and Personnel

Individuals with disabilities are significantly underrepresented in research and are often not included in discussions on diversity, equity, inclusion, and accessibility. The Advisory Committee to the National Institutes of Health Director Working Group on Diversity formed an ad hoc Subgroup on Individuals with Disabilities to develop recommendations on how to enhance the inclusion of people with disabilities in the scientific workforce as well as throughout the research ecosystem. The article summarizes those recommendations and how they came about, then contextualizes them for the spinal cord injury (SCI) research field. Other fields that do not typically include individuals with disabilities in research can learn from the strong history of including people with SCI as research participants. There has been a growing drive within our field to enhance the inclusion of people living with SCI as research partners, but how are we doing with promoting their inclusion in the scientific workforce?

Anderson KD. Including People with Spinal Cord Injury in Research as Participants, Partners, and Personnel. Int J Environ Res Public Health. 2023 Jul 28;20(15):6466. doi: 10.3390/ijerph20156466. 


 

document iconEquitable partnerships between scientists and persons living with spinal cord injury will strengthen research scope, quality, and outcomes

Partnerships across all stakeholders in the research process strengthen the outcomes and ultimate usability of research. The purpose of this review is to discuss the current level of inclusion of people living with spinal cord injury (SCI) in the research process, the science of engagement and benefits of partnerships in research, and emerging resources available to help promote ethical and effective partnerships in SCI research.

Anderson K. D. (2021). Equitable partnerships between scientists and persons living with spinal cord injury will strengthen research scope, quality, and outcomes. Current opinion in neurology34(6), 783–788. https://doi.org/10.1097/WCO.0000000000000989


document iconComprehensive and person-centred approach in research: what is missing?

The concept of a comprehensive and person-centred approach in healthcare is not new and it is the basic principle that is embedded in the International Classification of Functioning, Disability and Health (ICF) framework. However, the implementation of a comprehensive and person-centred approach has not been fully translated into research development in people living with spinal cord injuries (SCI). This perspective paper will discuss some of the limiting factors and provide some examples of previous and current successful steps being taken. Finally, this paper will suggest some of the steps needed to implement this person centred model in research in people with SCI.

Bochkezanian, V., Anderson, K.D. (2022). Comprehensive and person-centred approach in research: what is missing?. Spinal Cord, 60, 187–189.  https://doi.org/10.1038/s41393-021-00735-0


document iconIKT Guiding Principles Manuscript

The paper presents the IKT Guiding Principles for conducting and disseminating spinal cord injury research in partnership. This paper describes the process of rigorously and systematically co-developing the IKT Guiding Principles.

Gainforth, H. L., Hoekstra, F., McKay, R., McBride, C. B., Sweet, S. N., Martin Ginis, K. A., Anderson, K., Chernesky, J., Clarke, T., Forwell, S., Maffin, J., McPhail, L. T., Mortenson, W. B., Scarrow, G., Schaefer, L., Sibley, K. M., Athanasopoulos, P., & Willms, R. (2020). Integrated Knowledge Translation Guiding Principles for Conducting and Disseminating Spinal Cord Injury Research in Partnership. Archives of physical medicine and rehabilitation, S0003-9993(20)31155-2. Advance online publication. https://doi.org/10.1016/j.apmr.2020.09.393


document iconA scoping review on partnership principles and strategies identified from health research about spinal cord injury

This scoping review presents systematic overviews of partnership principles and strategies identified from health research about spinal cord injury and related health conditions. These findings informed the development of the IKT Guiding Principles.

Hoekstra, F., Trigo, F., Sibley, K. M., Graham, I. D., Kennefick, M., Mrklas, K. J., Nguyen, T., Vis-Dunbar, M., S.C. I Guiding Principles Consensus Panel.,  & Gainforth, H. L. (2022) Systematic overviews of partnership principles and strategies identified from health research about spinal cord injury and related health conditions: A scoping review, The Journal of Spinal Cord Medicine. Available at: https://doi.org/10.1080/10790268.2022..203357


document iconA Trainee Perspective on an IKT Approach to Developing the First IKT Guiding Principles for the SCI Research System

The IKT Guiding Principles project is included within the fourth volume of the IKTRN casebook series that highlights what really happens in IKT projects. This paper discusses the experiences and lessons learned by trainees who are part of the IKT Guiding Principles partnership.

Hoekstra, F., McKay, R. C., & Gainforth, H. L. (2021) A trainee perspective on an integrated knowledge translation approach to developing the first Integrated Knowledge Translation Guiding Principles for the spinal cord injury research system. In C. McCutcheon, J. Reszel, A. Kothari, & I. D Graham (Eds.), How we work together: The Integrated Knowledge Translation Research Network Casebook. Vol. 4. Integrated Knowledge Translation Research Network. Available at: https://iktrn.ohri.ca/projects/casebook/


document iconResearchers’ and Research Users’ Experiences With and Reasons for Working Together in Spinal Cord Injury Research Partnerships

This qualitative study provides a new understanding of spinal cord injury researchers’ and research users’ partnership experiences over time.

Hoekstra, F., Schaefer, L., Athanasopoulos, P., SCI Guiding Principles Consensus Panel., & Gainforth, H. L. (2021). Researchers’ and Research Users’ Experiences With and Reasons for Working Together in Spinal Cord Injury Research Partnerships: A Qualitative Study. International Journal of Health Policy and Management. https://doi.org/10.34172/ijhpm.2021.35


document iconA ‘RECIPE’ with example principles and strategies for research partnerships

This study informed the co-creation process of the first Integrated Knowledge Translation (IKT) Guiding Principles for Conducting and Disseminating Spinal Cord Injury Research in Partnerships (www.IKTprinciples.com). Our findings will also help support the use of these new IKT Guiding Principles by researchers and research users.

Click here for a full list of research partnership strategies that are linked to the ‘RECIPE’.

You can read the original research in Evidence & Policy: Hoekstra, F., SCI Guiding Principles Consensus Panel, Gainforth, H.L. (2021). Principles and related strategies for spinal cord injury research partnership approaches: a qualitative study. Evidence & Policy. DOI: 10.1332/174426421X16161715996124./


document iconPrinciples to guide spinal cord injury research partnerships: a Delphi consensus study

To establish consensus regarding principles that should be used to guide spinal cord injury (SCI) research partnerships between researchers and research users.

Gainforth, H.L., McKay, R.C., Femke, H., Jocelyn Maffin, J., Sibley K.M., Jung, M.E., & SCI Guiding Principles Consensus Panel. L. (2021) Principles to guide spinal cord injury research partnerships: a Delphi consensus study. Disability and Rehabilitation,. https://doi.org/10.1080/09638288.2021.1985635


document iconA Review of Reviews on Principles, Strategies, Outcomes, and Impacts of Research Partnerships Approaches

This review of reviews presents overarching principles, strategies, outcomes, and impacts of research partnerships. The findings are synthesized from partnership literature across different research areas involving different groups of research users.

Hoekstra, F., Mrklas, K. J., Khan, M. McKay, R. C., Vis-Dunbar, M., Sibley, K. M., Nguyen, T., Graham, I. D., SCI Guiding Principles Consensus Panel., & Gainforth, H. L. (2020) A review of reviews on principles, strategies, outcomes and impacts of research partnerships approaches: a first step in synthesising the research partnership literature. Health Research Policy and Systems, 18,51. https://doi.org/10.1186/s12961-020-0544-9


document iconA Review Protocol on Research Partnerships: a Coordinated Multicenter Team Approach

The review protocol outlines the five reviews that will take place to locate, review, and synthesize literature to better understand the evidence base of research partnerships.

Hoekstra, F., Mrklas, K. J., Sibley, K. M., Nguyen, T., Vis-Dunbar, M., Neilson, C. J., Crockett, H. L., Gainforth, H. L., Graham, I. D. (2018). A review protocol on research partnerships: a Coordinated Multicenter Team approach. Systematic Reviews, 7(1). https://doi.org/10.1186/s13643-018-0879-2

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