Perceived stigma in Spasmoic Torticollis

Authors

  • Ilias Papathanasiou MSc, MRCSLT, MCSP,

    Corresponding author
    1. National Hospital for Neurology and Neurosurgery, United Kingdom
    2. Department of Clinical Neurology, Institute of Neurology, University of London, United Kingdom
    • Therapy Services, National Hospital for Neurology and Neurosurgery, Queen Square, London WC1N 3BG, UK.
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  • Lea MacDonald PhD,

    1. St George's Hospital Medical School, University of London, United Kingdom
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  • Renata Whurr PhD, FRCSLT,

    1. National Hospital for Neurology and Neurosurgery, United Kingdom
    2. Department of Clinical Neurology, Institute of Neurology, University of London, United Kingdom
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  • Marjan Jahanshahi PhD

    1. Department of Clinical Neurology, Institute of Neurology, University of London, United Kingdom
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Abstract

Little is known about the “stigmatizing” effects of Spasmodic Torticollis—a condition that produces physical disfigurement. This is important in understanding the social dimensions of this disorder. This study examined the presence, the dimensions, and the degree of perceived stigma in patients with Spasmodic Torticollis. The study was completed in two stages. In the first stage, ten patients were interviewed to identify the effects of their condition on their social interactions. In the second stage, a self-rating measure of stigma and questions about the impact of the condition on the patients' lives were devised. Perceived stigma was defined as avoidance of others, avoidance by others, self-consciousness, feeling unattractive, feeling apologetic, and feeling different from others. The questionnaires were sent to one hundred patients. The majority of the patients perceived “some” or “severe” stigma. Stigma was found to affect the patients' social, private, and working lives. It is suggested that stigma in Spasmodic Torticollis needs to be considered as a parameter relevant to the clinical management of these patients. © 2001 Movement Disorder Society.

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