Stigma & Quality of Life of Youth w/Facial Differences

描述（由申请人提供）：本研究项目的长期目标是利用视频技术创建和传播基于证据的社交技能培训计划，以提高患有颅面差异（cfd）的青少年（11至14岁）的社交技能，减少这些青少年所经历的耻辱水平，并提高他们的生活质量（QoL）。为了开始实现这一长期目标，该项目将调查cfd、病耻感和青少年生活质量之间的关系。我们将在前两项研究的基础上，开发由NIDCR支持的颅面特异性生活质量模块。为了评估耻辱感的程度，在之前的研究中拍摄的参与者的照片将由患有和不患有cfd的青少年、父母、医务人员和在职教师进行评分。评级将是个人属性，如吸引力、智力和友好程度，尽管要评级的确切属性将作为拟议研究的一部分，通过青少年焦点小组确定。然后，我们将检查这些评分如何与早期研究中参与者获得的生活质量评分相关联。本研究的第二个目标是开发方法，以检验在污名化情境中各种社会技能与评分和生活质量之间的关系。我们将与患有和不患有cfd的青少年进行焦点小组讨论，以确定他们认为哪些社交技能对减少感知到的歧视（污名）最为重要。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短片，在定格画面中描绘患有cfd的青少年演员，在单独的自我介绍中，以及在不同的污名化的社会情境中做出反应。年龄相匹配的患有或未患有cfd的同龄人、家长、医学和教学学生将根据颅面病耻感评定量表对视频受试者进行评分，该量表是该资助的一部分。该项目将帮助青少年（11至14岁）识别有效的社交技能，并将其作为后续干预设计和评估社交技能培训计划的基础。本研究的参与者将从西雅图、芝加哥和北卡罗来纳州教堂山的站点招募。

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.