Engaging stakeholders in rehabilitation research: a scoping review of strategies used in partnerships and evaluation of impacts

Abstract

There is a great interest in rehabilitation to engage stakeholders in the research process. However, further evidence is needed to identify effective strategies for meaningful stakeholder engagement that leads to more useful research that positively impacts practice. Implications for Rehabilitation Using several strategies to engage various stakeholders throughout the research process is thought to increase the quality of the research and the rehabilitation process by developing proposals and programs responding better to their needs. Engagement strategies need to be better reported and evaluated in the literature. Engagement facilitate uptake of research findings by increasing stakeholders' awareness of the evidence, the resources available and their own ability to act upon a situation. Factors influencing opportunities for stakeholder engagement need to be better understood.

Defining Integrated Knowledge Translation and Moving Forward: A Response to Recent Commentaries

“…Finally, the review showed that we do not yet understand how decision-makers ought to be engaged to achieve optimal outcomes. Similar knowledge gaps were found in a review by Camden et al 9 As IKT scholars consider and prioritize research questions, it might be useful to remember that different stakeholders will assign the gaps varying importance; what a funder needs to know about IKT (eg, “how can funders incentivize researchers to engage in IKT research?”) will be different than what a researcher will want to know (eg, “what theory can be used to understand IKT processes?”). Both IKT researchers and knowledge users are interested in how to define and measure IKT outcomes.…”

Integrated knowledge translation: digging deeper, moving forward

“…Surprisingly, common barriers and enablers did not emerge across the majority of these studies, although four of them noted the advantage of multiple and varied opportunities for interaction and five studies suggested that differing needs and priorities were a barrier. A 2014 scoping review of 19 IKT studies focused on rehabilitation research also found lack of evidence related to outcomes, but perceived outcomes included the formation of collaborations, support for the research and its implementation, and the empowerment of knowledge users 11. Both scoping reviews recommend that researchers report their IKT strategies in detail, including how knowledge users were engaged (eg, team meetings, working groups, web portals and training sessions), at which points during the research process users were involved (eg, question development, data interpretation, dissemination) and the intensity of that involvement or level of engagement.…”

Knowledge Exchange and Discovery in the Age of Social Media: The Journey From Inception to Establishment of a Parent-Led Web-Based Research Advisory Community for Childhood Disability

“…Likewise, research-initiated engagement activities are often limited in their scope; include limited number of individuals or voices, reflecting a potential biased view of the issue; focus only on a specific health condition; or only bring in families at strategic points in the research cycle (eg, at the end to disseminate the findings). Camden et al summarized strategies used in the past to recruit stakeholders in rehabilitation research (primarily people with disabilities and their families) as targeted (eg, by direct invitation to individuals) or open (eg, by asking partner organizations to solicit from their membership, or by using media) [10]. Most activities were done by committees and tended to be face-to-face meetings or teleconference meetings.…”

“…We have 3 parents from our group as authors on this paper, and 1 on a recent review of stakeholder engagement [10]. Our moderator has copresented with our researchers at our provincial meeting of children’s rehabilitation organizations [30] and is providing a video to include in a panel discussion of family engagement at an upcoming international meeting.…”

“…Although the importance of and need for engagement have been acknowledged, little evidence exists about the best way to actively engage families to provide input that is valuable to clinicians and researchers [6,10,11]. Research conducted into engaging families in research has highlighted several barriers that limit the ability of families to participate in research and be fully engaged.…”