Stigma & Quality of Life of Youth w/Facial Differences

描述(由申请者提供)：这项研究计划的长期目标是创建和传播一项基于证据的社交技能培训计划，使用视频技术，提高患有头面部差异(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，该项目将调查差异化、耻辱和青少年生活质量之间的联系。我们将在前两项研究的基础上，开发由NIDCR支持的特定于颅面的QOL模块。为了评估耻辱的程度，在以前的研究中拍摄的参与者的照片将由有或没有CFD的青年、父母、医务人员和正在接受培训的教师进行评级。评分将根据个人属性进行，如吸引力、智商和友善，尽管具体的评分属性将通过青少年焦点小组作为拟议研究的一部分来确定。然后，我们将研究这些评分与从早期研究中的参与者获得的生活质量得分之间的关系。这项研究的第二个目标是开发方法来检查各种社交技能之间的联系，这些技能在污名化的情况下被证明与评级和生活质量有关。我们将对患有和没有CFD的青少年进行重点小组，以确定他们认为哪些社交技能在减少被认为的歧视(耻辱)方面最重要。利用这些信息，结合基于理论的文献，我们将制作一系列视频片段，描绘定格中的青少年演员的CFD，在单独的自我介绍中，以及在回应不同污名化的社会情况时。年龄相匹配的同龄人、有无CFD的同龄人、父母以及医学和教学学生将根据作为这项资助的一部分开发的颅面污名评定量表对视频对象进行评分。该项目将帮助确定青少年(11至14岁)的有效社交技能，并以差额发展作为后续干预、设计和评估社交技能培训方案的基础。这项研究的参与者将从西雅图、芝加哥和北卡罗来纳州的教堂山招募。

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.