PURPOSE/OBJECTIVE: Disability identity involves affirming one’s status as a person with a
disability and incorporating this group membership into one’s identity. It is associated with well-being
in populations of people with disabilities, but its relationship with depression and anxiety
in multiple sclerosis (MS) has yet to be examined. It was...
This focus group study examined the social experiences of 10 adolescents ages 12-17 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...
PURPOSE/OBJECTIVE: Current theories of adaptation to disability do not address differences in adaptation to congenital compared to acquired disability. Although people with congenital disabilities are generally assumed to be better adapted than people with acquired disabilities, few studies have tested this, and even fewer have attempted to explain the mechanisms...
Self-disclosure is a complex process that impacts social, cultural, and individual contexts of people’s lives. Under ideal circumstances, disclosure strengthens social bonds, enhances intimacy in relationships, and fosters a more unified sense of the self. Disclosing information about a stigmatized identity, however, is associated with a variety of risks and...
Hundreds of millions of people worldwide with rare diseases face unique challenges to quality of life (QoL), including stigma and limited support. To address these concerns, many rare disease organizations offer support conferences for people to meet others with their condition. This is the first research to examine the effects...
Although the importance of the face in communication is well-known, there has been little discussion of the ramifications for those who lack facial expression: individuals with facial paralysis such as Bell’s palsy and Möbius syndrome, and facial movement disorders like Parkinson’s disease. By examining the challenges experienced by these individuals,...
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...