罕见病群体的残疾污名研究

发布时间：2018-06-19 01:10

本文选题：社会公众 + 罕见病群体　；参考：《残疾人研究》2017年04期

【摘要】：本研究以大规模网络问卷调查法进行资料收集,就罕见病群体残疾污名成因及影响,分别对社会公众及罕见病群体开展调查,结果显示:残疾污名对社会公众和罕见病患者都会产生深远影响,社会公众主要表现为恐惧与排斥、怜悯患者,对患者的影响主要表现为生活隔离和生活质量较低。罕见病群体残疾污名主要与社会公众认知度低、媒体负面报道和罕见病群体的自我污名意识相关。罕见病群体要去除社会残疾污名和自我污名,需要其自身和政府、社会公众、媒体都作出相应的努力。
[Abstract]:In this study, a large-scale online questionnaire survey was conducted to investigate the causes and effects of disability stigma in rare disease groups, and to investigate the public and rare disease groups respectively. The results showed that the disability stigma had a profound effect on both the public and the patients with rare diseases. The social public mainly showed fear and rejection, compassion for the patients, the main impact on patients was living isolation and low quality of life. The disability stigma of the rare disease group is mainly related to the low public awareness, negative media reports and self-stigmatization of the rare disease group. In order to remove social disability stigma and self-stigma, rare disease groups need their own efforts, the government, the public and the media.
【作者单位】：南京航空航天大学人文与社科学院;河海大学公共管理学院;
【基金】：江苏省普通高校研究生科研创新计划项目(SJZZ16-0051) 南京航空航天大学研究生创新基地开放基金项目(kdjj20161002) 国家社科基金(13CSH056)
【分类号】：C913.69

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