Stigma & Quality of Life of Youth w/Facial Differences

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• 批准号: 6926149
• 负责人: Donald Lee Patrick
• 金额: $ 37.85万
• 依托单位: UNIVERSITY OF WASHINGTON
• 依托单位国家: 美国
• 财政年份: 2004
• 资助国家: 美国
• 起止时间: 2004-08-01 至 2007-10-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6926149
• 关键词: adolescence (12-20); behavior test; behavioral /social science research tag; clinical research; congenital oral /facial /cranial defect; data collection methodology /evaluation; educational resource design /development; focus groups; human subject; injury; interview; peer group; psychodrama; psychological stressor; psychometrics; psychosocial separation; quality of life; sensitivity training; social group process; social psychology; video recording system

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.

描述（由申请人提供）：该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，该计划将增强颅颌面青少年（11 至 14 岁）的社交技能差异（CFD），降低这些青少年所经历的耻辱程度，并提高他们感知的生活质量（QoL）。为了开始实现这一长期目标，该项目将调查 CFD、耻辱和青少年生活质量之间的关联。我们将在之前两项研究的基础上开发由 NIDCR 支持的颅面特定生活质量模块。为了评估耻辱程度，之前研究中拍摄的参与者照片将由有或没有 CFD 的青少年、家长、接受培训的医务人员和教师进行评分。评级将针对个人属性，例如吸引力、智力和友善度，尽管要评级的精确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，我们将研究这些评级与早期研究参与者获得的生活质量分数之间的关系。这项研究的第二个目标是开发方法来检查污名化情况下所证明的各种社交技能与收视率和生活质量之间的关联。我们将对有和没有 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于减少感知到的歧视（耻辱）最重要。将这些信息与基于理论的文献结合起来，我们将创建一系列视频片段，以冻结帧、个人自我介绍以及对不同污名化社会情境的反应来描绘患有 CFD 的青少年演员。年龄匹配的有或没有 CFD 的同龄人、家长以及医学和教学专业的学生将根据作为本次资助的一部分开发的颅面耻辱评级量表对视频对象进行评级。该项目将帮助确定青少年（11 至 14 岁）的有效社交技能，并将 CFD 作为后续干预设计和社交技能培训计划评估的基础。这项研究的参与者将从西雅图、芝加哥和北卡罗来纳州教堂山的地点招募。