OBJECTIVES: To describe stigma experiences of adolescents with congenital and acquired facial differences. DESIGN: Used baseline cross-sectional stigma-related responses from a four site (Seattle WA, Galveston TX, Chicago IL and Chapel Hill NC) US study enrolling 185 English speaking, US participants ages 1118 years old with facial differences (60% male; 80% congenital conditions). Closed-ended, self-administered questions drawn from the Youth Quality of Life Instrument Facial Differences Module (YQOL-FD) determined perceptions of stigmatization. Mothers (n=153) were independently asked seven matching questions. RESULTS: Frequencies report combined responses of 'sometimes,' 'fairly often,' and 'very often.' Mother's responses are in parentheses. *35% (47%) noticed people staring at their face in the past week. * 28% (43%) talked with others about how their face looks in the past month. * 29% (31%) heard others say something about their face in the past month. * 32% (32%) told peers about their facial difference in the past month. * 12% (12%) felt left out of doing things with peers because of how their face looks in the past month. * 11% (8%) got into a fight because of how their face looks in the past month. * 20% (18%) were teased about how their face looks in the past month. CONCLUSIONS: Stigma experiences were frequently reported by youth with facial differences and were correlated with independent parental report. This level of stigma suggests that media and public health interventions may be warranted to reduce discrimination, prejudice and negative adolescent social experiences related to facial difference.
OBJECTIVES: To describe stigma experiences of adolescents with congenital and acquired facial differences. DESIGN: Used baseline cross-sectional stigma-related responses from a four site (Seattle WA, Galveston TX, Chicago IL and Chapel Hill NC) US study enrolling 185 English speaking, US participants ages 1118 years old with facial differences (60% male; 80% congenital conditions). Closed-ended, self-administered questions drawn from the Youth Quality of Life Instrument Facial Differences Module (YQOL-FD) determined perceptions of stigmatization. Mothers (n=153) were independently asked seven matching questions. RESULTS: Frequencies report combined responses of 'sometimes,' 'fairly often,' and 'very often.' Mother's responses are in parentheses. *35% (47%) noticed people staring at their face in the past week. * 28% (43%) talked with others about how their face looks in the past month. * 29% (31%) heard others say something about their face in the past month. * 32% (32%) told peers about their facial difference in the past month. * 12% (12%) felt left out of doing things with peers because of how their face looks in the past month. * 11% (8%) got into a fight because of how their face looks in the past month. * 20% (18%) were teased about how their face looks in the past month. CONCLUSIONS: Stigma experiences were frequently reported by youth with facial differences and were correlated with independent parental report. This level of stigma suggests that media and public health interventions may be warranted to reduce discrimination, prejudice and negative adolescent social experiences related to facial difference.
Authors: Johanna Loewenstein; Erica Sutton; Rick Guidotti; Kristin Shapiro; Karen Ball; Diane McLean; Barbara Biesecker Journal: Am J Med Genet A Date: 2008-06-15 Impact factor: 2.802