Introduction: Including people with lived experience in research is encouraged to enhance intervention feasibility and acceptability. But what does that look like for stroke survivors, especially when they live in the bush?
Methods: Lucy, a young stroke survivor and psychologist, collaborated in a pragmatic, co-design research process to develop a stroke recovery intervention for rural and remote stroke survivors. Lucy shared her lived experience of recovering from stroke in rural and remote locations by participating: 1) in-person as an interviewee to explore the rural and remote stroke survivors’ perspective of recovering; 2) online as an expert panel member to design, pilot and refine the intervention; and 3) through narrative reflection in the dissemination of findings. Data were iteratively collected and analysed qualitatively throughout the project.
Results: Lucy, as a person with lived experience of stroke, detoured into research and navigated: her role in an evolving research process; her relationship with co-researchers; and her mode of participation in data collection and analysis. Lucy arrived at a destination unexpected and found the experience empowering personally and professionally.
Conclusion: Pragmatic co-design of a stroke recovery intervention with a rural and remote stroke survivor resulted in benefits for the stroke survivor beyond what was expected. Further exploration of the co-design process and the potential benefits for participating stroke survivors is warranted.
Relevance to clinical practice or patient experience: This presentation is relevant for stroke survivors who are considering sharing their lived experience in a co-design process. It is also relevant to clinicians and researchers who intend to include people with lived experience of stroke in a co-design process, particularly stroke survivors from rural and remote locations.