Stigma & Quality of Life of Youth w/Facial Differences

柱头

• 批准号: 6768996
• 负责人: Donald Lee Patrick
• 金额: $ 49.12万
• 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 2006-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6768996
• 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）：该研究计划的远程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，该计划将增强颅面差异（CFD）的年轻青少年（11至14岁）的社交技能（11至14岁），降低这些青少年经验丰富的污名水平，并提高其寿命的质量（QOL）（QOL）。为了开始解决这个远程目标，该项目将调查CFD，污名和青少年QOL之间的关联。我们将基于前两项在开发NIDCR支持的颅面特异性QOL模块方面的研究。为了评估污名水平，先前研究中拍摄的参与者的照片将由有或没有CFD，父母以及医务人员以及培训的教师的青年评级。这些评分将具有个人属性，例如吸引力，智慧和友善性，尽管要评估的确切属性将通过青少年焦点小组确定为拟议研究的一部分。然后，我们将研究这些评分与早期研究参与者获得的QOL分数如何相关。这项研究的第二个目标是开发方法，用于研究在污名化情况下与评级和QOL污名化的各种社交技能的关联。我们将与有或没有CFD的青少年进行焦点小组，以确定他们认为哪些社交技能在减少感知的歧视（污名）中最重要。使用这些信息与基于理论的文献结合使用，我们将创建一系列视频小插曲，以冻结框架，独奏自我介绍以及对不同的污名化社交场合的反应，以CFD的形式描绘青少年演员。具有和没有CFD的年龄匹配的同龄人，父母以及医学和教学学生将在颅面污名评级量表上对视频主题进行评分，作为这笔赠款的一部分。该项目将有助于确定年轻青少年（11至14岁）的有效社交技能，以随后的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网站招募。