A grounded theory of illness representation among musicians with embouchure dystonia/syndrome

Musician’s Task-Specific Focal Dystonia (MD) is a neurological disorder that disrupts highly trained performance-specific motor programs. Among brass and wind players, the embouchure subtype (Embouchure Dystonia, ED) affects the orofacial musculature, often with career-ending consequences. Little is known about how illness representations influence therapeutic decision-making in this group. To address this gap, we conducted a constructivist grounded theory study using in-depth, semi-structured interviews with 14 brass and woodwind musicians experiencing embouchure-related dysfunction (here referred to as Embouchure Syndrome, ES) to explore cognitive, emotional, and cultural components of illness representation through the lens of Leventhal’s Common-Sense Model. Participants described conflicting explanations of symptoms, embodied struggles with tension and control, destabilized identities, and systemic and social barriers to care. Taken together, these accounts formed a theoretical construction wherein musicians oscillate between competing causal models, frame their symptoms along a mind-body continuum, and seek to manage cycles of tension and relaxation within an environment of redefinition of self and with variable opportunities for disclosure and treatment. We suggest that musicians’ conception of symptoms influences receptivity to both biomedical and rehabilitative strategies. These findings highlight the need for communication strategies that align with patient illness representation and understanding, for interdisciplinary care models, and for diagnostic framing that accounts for the lived experience of ES and other forms of Musician’s Dystonia.