Stigma & Quality of Life of Youth w/Facial Differences

描述（由申请人提供）：本研究计划的长期目标是使用视频技术创建和传播基于证据的社交技能培训计划，该计划将增强具有颅面差异（CFD）的青少年（11至14岁）的社交技能，减少这些青少年经历的耻辱水平，并提高他们的感知生活质量（QoL）。为了开始解决这一长期目标，本项目将调查差价合约，耻辱和青少年生活质量之间的关联。我们将建立在我们以前的两项研究，在NIDCR支持下开发颅面特异性生活质量模块。为了评估耻辱的程度，在先前的研究中拍摄的参与者的照片将由有和没有CFD的青少年，父母，医务人员和教师在培训中进行评级。评级将是个人属性，如吸引力，智力和友好，虽然确切的属性将被评为通过青少年焦点小组确定作为拟议研究的一部分。然后，我们将研究这些评级是如何与生活质量得分从参与者在早期的研究。本研究的第二个目的是研究各种社会技能的相关性，这些技能在污名化的情况下与评级和生活质量之间存在关联。我们将与有和没有CFD的青少年进行焦点小组讨论，以确定他们认为在减少歧视（耻辱）方面最重要的社交技能。使用这些信息与基于理论的文献相结合，我们将创建一系列视频短片，以定格的方式描绘青少年演员的CFD，在自我介绍中以及在应对不同的污名化社会情况时。有和没有差价合约，父母，医学和教学学生的匹配的同龄人将评价视频科目的颅面耻辱评级量表开发作为该补助金的一部分。该项目将帮助识别患有CFD的青少年（11至14岁）的有效社交技能，作为后续干预设计和社交技能培训计划评估的基础。本研究的受试者将从西雅图、芝加哥和查佩尔山（NC）的研究中心招募。

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.