Tufts University, Medford, MA, USA.
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.
本焦点小组研究探索了 12 名 Moebius 综合征成人的社交互动体验和策略，Moebius 综合征是一种罕见的先天性疾病，其特征为面瘫。内容分析揭示了社交功能的五个主题：社交参与/回避；适应力/敏感性；社会支持/污名；被理解/误解；以及对 Moebius 综合征的公众意识/缺乏意识。参与者使用了补偿性表达策略，如语调、手势和幽默。无法用面部表情表达自己、面部有差异以及患有罕见疾病的结合特别具有污名化。提高公众意识并为面瘫患者开发社交技能项目可以促进社交功能。
