Abstract Background and aims Despite increasing endorsement of patient and public involvement (PPI) in stroke research, people with stroke are frequently involved in limited or consultative roles. Recruitment challenges, communication barriers, and restrictive research governance processes often result in tokenistic involvement rather than meaningful partnership. There is a critical need for practical, theory-informed guidance to support researchers in recruiting and sustaining people with stroke as research partners from the outset of the research cycle. Aim: To present the BEFORE recommendations as a structured approach to overcoming recruitment and governance barriers when involving people with stroke as active research partners. Methods The BEFORE recommendations were created through qualitative research involving individuals with chronic stroke, both with and without aphasia, who had previous research experience via semi-structured interviews. Data were subject to thematic analysis according to the Braun and Clarke methodology. Results Results identified key barriers and facilitators to involvement, mapped across functional, contextual, and environmental domains. These insights informed six actionable recommendations, the BEFORE recommendations: Build rapport; Establish communication needs; Foster a support system; Offer accessible training; Reinforce tailored resources; Encourage participation in communication groups. Conclusions The BEFORE recommendations address common recruitment challenges while also responding to governance concerns such as ethics approval, informed consent, training, compensation, and sustainability of involvement. These recommendations provide a transferable, pragmatic framework to support inclusive recruitment and sustained partnership with people with stroke across complex intervention research. Conflict of interest Nothing to disclose
Marina Charalambous (Fri,) studied this question.