Living with Focal Task-Specific Dystonia: The Musician’s Perspective

Background: Focal task-specific dystonia, known as musician’s dystonia, is a motor disorder that affects approximately 1% of professional musicians. Symptoms of musician’s dystonia include the loss of fine motor control and dexterity of repetitive, highly trained movements, which for a professional musician can be career ending. There is limited research on the unique experiences and perspectives of professional musicians with focal task-specific dystonia. Methods: A qualitative approach was chosen to explore the lived experiences of professional musicians with focal task-specific dystonia, specifically a phenomenological research tradition. Eleven musicians fitting the targeted criteria were recruited and interviewed. Four interviews were selected for analysis in this thesis. Each participant completed two online surveys, including the QuickDASH (Disability of Arm, Shoulder, Hand) self-report survey addressing functional limitations related to upper extremity injury. Each musician participated in a semi-structured interview of broad, open-ended questions. Interviews were transcribed and individually analyzed using a modified version of Moustaka’s data analysis approach (Cresswell & Poth, 2017). Significant statements were identified, grouped by meaning, and labeled. Grouped statements were then coded to facilitate the identification of emergent themes significant to the individual. Once individual themes were coded, common themes across participants were identified using cross-case analysis. Results: Six primary themes emerged amongst all participants: singularity of identity, practice as primary reaction, secrecy and shame, independent problem solving with trusted support, trauma response, and negative experiences with medical services. The themes illustrate meaningful areas of shared experiences amongst musicians with musician’s dystonia, including significant experiences of loss, isolation, and struggle to find adequate support through healthcare. Conclusions: These findings suggest areas in which healthcare providers may improve their support of professional musicians with focal task-specific dystonia. Consistent across all participants were areas of unique strength in abilities of self-assessment, analyses, and modification. These strengths represent an opportunity for healthcare providers to employ a collaborative approach when working with professional musicians with musician’s dystonia, in order to provide the best care for this population