Social interaction experiences of adults with Moebius Syndrome: a focus group

J Health Psychol. 2012 Nov;17(8):1212-22. doi: 10.1177/1359105311432491. Epub 2012 Jan 18.


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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adaptation, Psychological
  • Adolescent
  • Adult
  • Awareness
  • Communication Methods, Total
  • Female
  • Focus Groups
  • Humans
  • Interpersonal Relations*
  • Male
  • Middle Aged
  • Mobius Syndrome / diagnosis
  • Mobius Syndrome / psychology*
  • Rejection, Psychology
  • Resilience, Psychological
  • Social Adjustment
  • Social Stigma
  • Social Support
  • Young Adult