Socio-Cultural Dimensions of Neurofibromatosis

神经纤维瘤病的社会文化维度

• 批准号: 8819633
• 负责人: Joan Ablon
• 金额: --
• 依托单位: University of California-San Francisco
• 依托单位国家: 美国
• 项目类别: Standard Grant
• 财政年份: 1989
• 资助国家: 美国
• 起止时间: 1989-01-01 至 1992-12-31
• 项目状态: 已结题
• 来源: https://www.nsf.gov/awardsearch/showAward?AWD_ID=8819633&HistoricalAwards=false
• 关键词: Socio; Cultural; Dimensions; Neurofibromatosis

This project will study the life experiences, coping patterns and social supports of individuals with neurofibromatosis (NF), a common chronic and progressive neurological disorder. The individual with NF faces a lifetime of dealing with a disfiguring and disabling chronic disease whose prognosis is unpredictable. The project will study the local and national NF support groups, and will document the ways in which the media-created image of "the elephant man" as the personification of the dread and stigmatized disease has affected the adaptation of individuals and their families to their condition. The research will use indepth interviews and observation of individuals and families and NF support groups. This research is significant because it will show how individuals and families adapt to (organize, amd cope with) the complexities of genetic and chronic illness, stigma and disability. This research will be shed light on stigma as a social condition, and on the role of support groups in dealing with dramatic, stigmatized and often unpredictable health conditions.

这个项目将研究生活经验，应对模式， 神经纤维瘤病（NF）患者的社会支持 常见的慢性进行性神经系统疾病 的 患有NF的人一生都要面对毁容的问题， 和致残的慢性疾病，其预后是不可预测的。 该项目将研究地方和国家NF支持团体， 并将记录媒体创造的形象， “象人”作为恐惧的化身， 污名化的疾病影响了个人的适应能力， 和他们的家人 研究将采用深入访谈和观察 个人和家庭以及NF支持团体。 这项研究意义重大，因为它将展示个人如何 家庭适应（组织，科普）复杂性 遗传病和慢性病，耻辱和残疾。 这 研究将揭示耻辱作为一种社会状况， 关于支持团体在处理戏剧性事件中的作用， 被污名化和经常不可预测的健康状况。