“Nothing about us without us”: A scoping review of participatory research in egressibility studies

This scoping review explores the use of participatory research (PR) in studies addressing building fire evacuation for people with functional limitations. Following PRISMA-ScR guidelines, we searched Scopus, ScienceDirect, and PubMed (1990–2025), supplemented by Google Scholar and targeted repositories. Eligible studies involved people with functional limitations in empirical fire-evacuation research and described participatory elements. Data was charted for aims, participant communities, PR approaches during the different phases of research, methods, outcomes, and reported benefits or limitations. Twelve studies met inclusion. Participation was widespread during recruitment and data collection (interviews, focus groups, surveys, workshops, device trials), but rare in design, analysis, or dissemination stages. Using an adapted IAP2 spectrum, most studies (10/12) were at the Consult level, while only two achieved Collaborate , and none Empower . Reported benefits included more relevant problem framing, context-sensitive recommendations, and outputs better suited to practice. Persistent challenges included limited disability representation, reliance on small or convenience samples, inconsistent reporting of participatory features, and the substantial resources needed for sustained involvement. The field remains dominated by consultation but shows clear potential for deeper participation. Embedding PR across research phases can strengthen inclusiveness and impact while aligning with disability-rights principles of “nothing about us without us.” • Participatory research in egressibility studies is limited. • Most engaged people with functional limitations only during data collection. • Few studies shared decision-making; collaboration was rare. • Deeper participation could strengthen validity, relevance, and impact