Stroke survivors partner in research: a case example of collaborative processes

Abstract

The Canadian Strategy for Patient-Oriented Research supports the inclusion of patients as partners throughout the research process. Purposeful and meaningful engagement of patient partners after stroke can present unique challenges due to the potential impacts on cognition, communication, or mobility. The purpose of this paper is to provide a case example of working together with three individuals who bring their post-stroke lived experience, including one person with aphasia, from study design through to dissemination. The designed and executed qualitative research was the purpose of this collaboration; this paper describes the collaborative process rather than the outcomes of the original research. The Strategy for Patient-Oriented Research Patient Engagement Framework was followed to engage the patient partners fully as part of the research team. Patient partners were involved at regularly scheduled team meetings and provided guidance on key aspects of project design and decision-making. The patient partners provided robust and important contributions to many aspects of the research, including shaping interview questions, assisting with thematic analysis, and contributing to the dissemination of research findings. Effective team dynamics were fostered by focusing on the value of the lived experience knowledge, using best-practice communication strategies, as well as taking time for relationship-building and story sharing. With appropriate support and guidance, the individuals who have experienced stroke were valuable contributing members of our research team.

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