Early mobility to improve health outcomes following cardiac surgery (EVE) clinical trial development: engagement...

Patient engagement in research (PER) is increasingly recognized to enhance health research and facilitate the translation of research findings into practice. This occurs through integrating the knowledge, perspectives, and priorities of people with living/lived experience (PWLE) who receive or support those receiving care. Current approaches to PER emphasize verbal methods, where the thoughts and opinions of PWLE are shared in advisory groups, one-on-one or research group meetings, and town halls. While valuable, these methods often limit the expression of complex experiences, senses, and emotions that are difficult to articulate in words. Arts-based research methods involve individuals creating art, allowing for the exploration of embodied knowledge. Various types of art can be employed, including visual art, poetry, music, digital storytelling, and body mapping. Body mapping is an emerging arts-based research method that involves PWLE creating a life-sized tracing of their body in a position of their choice. The tracing is then filled based on reflections on guided questions about their healthcare experience using self-selected types of visual art and words. The knowledge gained from body mapping can be used to develop PWLE-informed recommendations on research directions, barriers and facilitators, and outcome and experience measures through subsequent virtual consultation workshops using the nominal group technique for consensus-building. While body mapping and virtual consensus building are promising approaches to generating future research questions and outcome measures, guidance related to their operationalization is lacking. This paper describes a model of a participatory approach to guiding research directions based on lived/living experiences through body mapping and subsequent virtual consultation workshops. The use of the model to explore the lived experience of early mobility after cardiac surgery while in the intensive care unit is used throughout as a case example. Using this model, we co-created an understanding of the embodied experience of early mobility after cardiac surgery in the intensive care unit, a patient-centred definition of early mobility, and generated and prioritized barriers and facilitators to early mobility along with outcome and experience measures to consider in future research. This model improves the accessibility of arts-based research methods for researchers engaging patients. In this way, researchers have more tools in their toolkit to broaden the types of knowledge that can be used to guide research and improve healthcare.