Abstract Background and aims Stroke survivors and their caregivers face lack of support and information increasing their psychosocial burden. We developed and evaluated the Navistroke post-stroke transition program to improve post-stroke participation. We aimed to test the feasibility of involving stroke survivors and caregivers and describe the process and the impact on research. Methods The project was underpinned by the Medical Research Council guidance and the Montreal model for patient engagement. It comprised 3 steps with increasing levels of involvement. Step1 followed a user centered design approach to codesign the intervention through workshops and consultations to test early prototypes. Step2 involved a feasibility study using consultation method to assess acceptability. Step3 assessed the impact of the program, in collaboration with a patient committee that guided the key methodological choices and overall project direction. Results The involvement levels of stroke survivors evolved across the 3 steps. In step 1, 6 stroke survivors and 6 caregivers fully co-designed the intervention to ensure that it reflected post-discharge needs. In step 2, 15 stroke survivors and 5 caregivers shared their experiences to refine the intervention and research project. In step 3, involvement shifted to co-decision, with the creation of a patient committee reviewing study outcomes, guiding measurement choices, and informing intervention delivery. Conclusions Stroke survivor involvement is feasible and valuable at every stage of a research project and should be actively considered by researchers. Although continuous involvement can be challenging, using different levels of engagement offers feasible ways to meaningfully integrate patients throughout the process. Conflict of interest Marion Delvallée: nothing to disclose; Mathilde Marchal: nothing to disclose; Anne Termoz: nothing to disclose; Ouazna Habchi: nothing to disclose; Laurent Derex: nothing to disclose; Anne-Marie Schott: nothing to disclose; Julie Haesebaert: nothing to disclose
Delvallée et al. (Fri,) studied this question.