“People are all about appearances”: A focus group of teenagers with Moebius Syndrome

Abstract

This focus group study examined the social experiences of 10 adolescents aged 12-17 years with Moebius Syndrome, a rare condition involving congenital facial paralysis. Content analysis revealed five themes: social engagement/disengagement, resilience/sensitivity, social support/stigma, being understood/misunderstood, and public awareness/lack of awareness of Moebius Syndrome. Compared to previous research on adults with Moebius Syndrome, adolescents were more likely to experience bullying and social strain. Like adults, teenagers displayed resilience and communication skills. Greater public awareness is key to reducing the stigma associated with this condition, and social skills programs should be developed to support those who struggle with social functioning.