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

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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.
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  • 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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  • This work was partially supported by a US Moebius Syndrome Foundation research travel grant.
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  • description.provenance : Made available in DSpace on 2014-08-11T23:22:10Z (GMT). No. of bitstreams: 2 bogartk995396988.zip: 73056 bytes, checksum: 942711842a71baab36e41b30eadba3ee (MD5) Bogart, Tickle-Degnen, Joffe Moebius Focus Group.pdf: 82546 bytes, checksum: d26c516b672a31e82a836a5655c7eaf3 (MD5) Previous issue date: 2012-11
  • description.provenance : Submitted by Open Access (openaccess@library.oregonstate.edu) on 2014-08-07T18:15:57Z No. of bitstreams: 1 Bogart, Tickle-Degnen, Joffe Moebius Focus Group.pdf: 82546 bytes, checksum: d26c516b672a31e82a836a5655c7eaf3 (MD5)
  • description.provenance : Approved for entry into archive by Deanne Bruner(deanne.bruner@oregonstate.edu) on 2014-08-11T23:22:10Z (GMT) No. of bitstreams: 2 bogartk995396988.zip: 73056 bytes, checksum: 942711842a71baab36e41b30eadba3ee (MD5) Bogart, Tickle-Degnen, Joffe Moebius Focus Group.pdf: 82546 bytes, checksum: d26c516b672a31e82a836a5655c7eaf3 (MD5)

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