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Social Interaction Experiences of Adults with Moebius Syndrome: A Focus Group Öffentlichkeit Deposited

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https://ir.library.oregonstate.edu/concern/articles/f7623h32q

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Abstract
  • This focus group study explored the social interaction experiences and strategies of 12 adults with Moebius syndrome, a rare congenital condition characterized by facial paralysis. Content analysis revealed five themes of social functioning: social engagement/disengagement, resilience/sensitivity, social support/stigma, being understood/misunderstood, and public awareness/lack of awareness of Moebius Syndrome. Participants used compensatory expressive strategies such as vocal tone, gestures, and humor. The combination of being unable to express oneself with the face, having a facial difference, and having a rare disease is particularly stigmatizing. Increasing public awareness and developing social skills programs for people with facial paralysis could facilitate social functioning.
  • Keywords: Facial paralysis, Resiliency, Emotional communication, Moebius Syndrome, Stigma
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Citation
  • Bogart, K. R., Tickle-Degnen, L., & Joffe, M. (2012). Social interaction experiences of adults with Moebius syndrome: A focus group. Journal of Health Psychology, 17(8), 1212-1222. doi:10.1177/1359105311432491
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Journal Volume
  • 17
Journal Issue/Number
  • 8
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Funding Statement (additional comments about funding)
  • This work was partially supported by a US Moebius Syndrome Foundation research travel grant.
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