Between therapy and reality: A lived-experience analysis of the priorities, progress and barriers in stuttering management

While numerous therapeutic approaches have been developed to assist people who stutter (PWS) in managing their condition, these interventions have been shaped by researchers’ and speech-language pathologists’ perspectives, showing limited effectiveness and long-term impact. Moreover, they often overlook PWS’ lived realities, including their challenges, priorities, and values. This study explores the lived experiences of adults who stutter, providing insights into their priorities, needs, challenges, and perspectives to inform person-centred therapeutic practices. Nineteen adults who stutter, from diverse countries and cultural backgrounds, and with varying experiences with stuttering management, participated in this study. Using convenience and purposive sampling, in-depth semi-structured interviews were conducted. The collected data were analysed through reflexive thematic analysis. The findings revealed the self-perpetuating cycle of fear and avoidance as the core disabling experience of stuttering, restricting meaningful engagement across emotional, cognitive, social, and professional domains. Participants emphasised that breaking this cycle requires proactive self-acceptance, integrating stuttering modification, desensitisation, and non-verbal communication strategies to foster effective communication. However, sustaining progress was hindered by time limitations, inadequate support, and the misalignment of therapy models with real-world needs—particularly those that overlook the fluency trap. Many participants viewed avoidance, rather than stuttering disfluency, as their main concern, thereby highlighting the need for therapeutic approaches that prioritise psychological resilience over fluency. These findings underscore the need for a person-centred approach in stuttering research and therapy, ensuring tailored interventions that are holistic yet structured, goal-oriented, and coherent, where different therapeutic goals complement rather than contradict each other, aligning with PWS’ lived realities.