Making stroke science accessible to people with lived experience: a narrative review
Stacie Broek, Marianne Elisabeth Klinke, Stacy Quinn, Melinda Berg RoaldsenBackground:
Adult stroke survivors and families may experience substantial barriers to accessing, understanding and using research evidence. Aphasia, cognitive changes, fatigue, health-literacy demands, restricted access to published literature and the technical presentation of research may all affect whether evidence is meaningful to stroke survivors and families.
Aims:
To examine barriers to accessible stroke research and consider how nurses, other health professionals, healthcare organisations, researchers, professional bodies and survivor-led initiatives can support the translation of evidence for stroke survivors and families.
Methods:
This clinical narrative review draws on selected stroke-specific and broader literature identified through focused searches in PubMed and CINAHL, supplemented by citation searching, recent guidelines and relevant practice examples. Sources were selected by author consensus, with broader evidence included where stroke-specific research was limited.
Findings:
Making research accessible requires clear language, relevance to survivor priorities, appropriate timing and format, communication support, family involvement where preferred, access to reliable information and verification of understanding. Nurses and allied health professionals have a distinctive role through sustained contact with survivors and families, and their responsibilities for assessment, education, interdisciplinary coordination and transition planning. Supported communication, visual formats, teach-back and co-designed resources may improve accessibility, although their effectiveness in stroke populations remains incompletely established. Survivor-led digital and artificial intelligence-assisted approaches offer further possibilities but require careful evaluation and human oversight.
Conclusions:
Making stroke evidence understandable and practical is a shared responsibility. Health professionals are fundamental to connecting evidence with the communication needs, priorities and lived circumstances of stroke survivors and families, but this role requires organisational and interdisciplinary support across the pathway.