The social side of Moebius: A focus group of teenagers with Moebius Syndrome

Celebration of Undergraduate Excellence (2013)Moebius syndrome is a rare congenital condition that results in facial paralysis. A recent study of adults with Moebius syndrome identified their social challenges and coping strategies. The present study extended previous research by examining these factors among teenagers with Moebius syndrome. The study included 10 teenagers with Moebius Syndrome and their social interaction experiences and coping strategies. The teenage participants ranged from 12-17 years old and most were Caucasian and American. The study was conducted as a focus group and they were interviewed about living with Moebius syndrome and their social interactions with people without the condition, especially in the school setting. Results were analyzed using qualitative content analysis and revealed five themes of social functioning: social engagement/disengagement; resilience/sensitivity; social support/stigma; being understood/misunderstood; and public awareness/lack of awareness. Compensatory expressivity skills such as vocal inflection and body movements were also used by some teenagers in order to help facilitate social interactions despite their facial paralysis. There were many similarities between the teenagers in the present study and the adults in the previous study. Both reported resiliency and showing confidence, persistence, competence, and choosing to be unaffected by negative judgments of others. Many adults and teenagers dislike discussing their Moebius with close family and friends, despite having their support. This is possibly due to the internalization of the social stigma of Moebius syndrome. Adults and teenagers are very much alike in that they use the same compensatory skills to facilitate their interaction with people, and both agree that stigmatization of Moebius can be reduced by creating more awareness of Moebius in the media and social institutions. A new finding among the teenagers was their reports of having a ‘positive outlook’, believed to be a result of getting support from being involved in groups and clubs at school. Additionally, teenagers experienced social strain from family members, such as unwanted help and attention