Stigma & Quality of Life of Youth w/Facial Differences

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DESCRIPTION (provided by applicant): The long-range goal of this research program is the creation and dissemination of an evidence-based social skills training program using video technology that will enhance the social skills of young adolescents (ages 11 to 14) with craniofacial differences (CFDs), reduce the level of stigma experienced by these adolescents, and improve their perceived quality of life (QoL). To begin addressing this long-range goal, this project will investigate the association between CFDs, stigma, and adolescent QoL. We shall build upon our previous two studies in developing craniofacial-specific QoL modules supported by NIDCR. To assess levels of stigma, photographs of participants taken in the prior studies will be rated by youth with and without CFDs, parents, and medical personnel and teachers in-training. The ratings will be of personal attributes such as attractiveness, intelligence, and friendliness, although the precise attributes to be rated will be determined as part of the proposed study via adolescent focus groups. We will then examine how these ratings are associated with QoL scores obtained from the participants in the earlier studies. A second objective of this study will be to develop methodologies for examining the association of various social skills evidenced in stigmatizing situations with ratings and QoL. We shall conduct focus groups with adolescents with and without CFDs to ascertain what social skills they view as most important in reducing perceived discrimination (stigma). Using this information in conjunction with theory based literature we shall create a series of video vignettes that portray adolescent actors with CFDs in freeze frame, in solo self introductions and in responding to different stigmatizing social situations. Age-matched peers with and without CFDs, parents, and medical and teaching students will rate the video subjects' on the Craniofacial Stigma Rating Scale developed as part of this grant. This project will help to identify effective social skills for young adolescents (11 to 14 years old) with CFDs as the basis for subsequent intervention design and evaluation of a social skills training program. Participants for this study will be recruited from sites in Seattle, Chicago, and Chapel Hill, NC.