罕见病群体的残疾污名研究

Study on the Disability Stigma of Rare Disease Groups

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。

This study aims to provide more information about rare diseases in China by means of questionnaire surveyan analysis based on a survey of public＇s attitude towards rare diseases. According to the survey, the stigma of disability has a profound effect on both the public and the individual. There are mainly two kinds of disability stigmas： fear and rejection, compassion.The influence of the patients was mainly characterized by a simple lifestyle and low quality of life. The disability stigmais related to public＇s low recognition, negative media reports and self-stigma. Hence, public, media as well as government and patients should step up cooperation and pull weight together.