期刊
JOURNAL OF HEALTH PSYCHOLOGY
卷 17, 期 8, 页码 1212-1222出版社
SAGE PUBLICATIONS LTD
DOI: 10.1177/1359105311432491
关键词
emotional communication; facial paralysis; Moebius Syndrome; resilience; stigma
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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