The Consequences of Oromandibular Dystonia on Communicative Participation: A Qualitative Study of the Insider's Experiences

Abstract

Purpose The purpose of this study was to obtain a self-reported account of the experience of living with oromandibular dystonia (OMD) to gain a better understanding of both the daily facilitators and barriers to communicative participation and the strategies used for adapting to life with OMD. Method Eight individuals with OMD and dysarthria participated in 1 face-to-face, semistructured interview. Interviews were audio-recorded and transcribed verbatim. Qualitative, phenomenological methods of coding, immersion, and emergence were used in the analysis of interview data. Results Three major themes and 7 subthemes emerged from the analysis of interview data. First, “speaking is different now” provided examples of how speech changes are manifested in various life situations. Second, “my roles have changed” addressed how OMD has impacted work, home, and social roles. Third, “I accept it and move on” involved finding strategies that help and adopting a different perspective. Conclusion We suggest that the management of OMD must take a more holistic approach by addressing consequences beyond the physical symptoms and be tailored to each individual based on his or her personal concerns and goals.