title: Social interaction experiences of adults with Moebius Syndrome: a focus group.
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.
authors.affiliation: Tufts University, Medford, MA, USA. kathleen.bogart@tufts.edu
authors.forename: Kathleen R
authors.initials: KR
authors.lastname: Bogart
authors.forename: Linda
authors.initials: L
authors.lastname: Tickle-Degnen
authors.forename: Matthew S
authors.initials: MS
authors.lastname: Joffe
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D001364:Awareness; D003145:Communication Methods, Total; D005260:Female; D017144:Focus Groups; D006801:Humans; D007398:Interpersonal Relations; D008297:Male; D008875:Middle Aged; D020331:Mobius Syndrome / Q000175:diagnosis / Q000523:psychology*; D012059:Rejection, Psychology; D055500:Resilience, Psychological; D012917:Social Adjustment; D057545:Social Stigma; D012944:Social Support; D055815:Young Adult