本文選題：社會公眾 + 罕見病群體　； 參考：《殘疾人研究》2017年04期

【摘要】：本研究以大規(guī)模網(wǎng)絡(luò)問卷調(diào)查法進(jìn)行資料收集,就罕見病群體殘疾污名成因及影響,分別對社會公眾及罕見病群體開展調(diào)查,結(jié)果顯示:殘疾污名對社會公眾和罕見病患者都會產(chǎn)生深遠(yuǎn)影響,社會公眾主要表現(xiàn)為恐懼與排斥、憐憫患者,對患者的影響主要表現(xiàn)為生活隔離和生活質(zhì)量較低。罕見病群體殘疾污名主要與社會公眾認(rèn)知度低、媒體負(fù)面報道和罕見病群體的自我污名意識相關(guān)。罕見病群體要去除社會殘疾污名和自我污名,需要其自身和政府、社會公眾、媒體都作出相應(yīng)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.
【作者單位】： 南京航空航天大學(xué)人文與社科學(xué)院;河海大學(xué)公共管理學(xué)院;
【基金】：江蘇省普通高校研究生科研創(chuàng)新計劃項目(SJZZ16-0051) 南京航空航天大學(xué)研究生創(chuàng)新基地開放基金項目(kdjj20161002) 國家社科基金(13CSH056)
【分類號】：C913.69

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本文編號：2037646