Droscha Lillian J, Chung Sophia, Li-Khan Zoe, Scott Ashley, Rubenstein Eric
Department of Epidemiology, School of Public Health, Boston University, Boston, Massachusetts, United States of America.
Department of Community Health, Tufts University, Medford, Massachusetts, United States of America.
PLoS One. 2025 Feb 10;20(2):e0316928. doi: 10.1371/journal.pone.0316928. eCollection 2025.
For people with intellectual and developmental disabilities, other's perceptions of them based on their condition often begin before birth and go on to impact relationships, opportunities, and self perception across the life course. Search engine results and news media, which may portray these conditions stereotypically or in poor light, are often a key source in these perceptions. Our purpose was to understand how search engine results and available news media can shape perceptions on certain intellectual and developmental disabilities.
We developed an online Likert-scale survey to measure differences in perceptions based off first available search engine results, images, and news headlines of four intellectual and developmental disabilities: cerebral palsy, Down syndrome, Prader-Willi syndrome, and Angelman syndrome. These four conditions were selected to compare less prevalent (Prader-Willi and Angelman) and more prevalent conditions (Down syndrome and cerebral palsy). Perception questions addressed general impression and aspects of the disability experience expected to be impacted by perception from others. We recruited via multiple social media platforms, flyers posted in the Boston area, and word of mouth to local communities and friends.
229 individuals opened the survey, and 125 responses were used in analysis. Mean responses to Prader-Willi syndrome were significantly more negative than responses to cerebral palsy, Down syndrome, and Angelman syndrome across all variables. Responses to Angelman syndrome were also more negative than responses to Down syndrome. Significant differences between conditions found when treating the data as continuous were confirmed when treating the data as ordinal.
Lesser-known intellectual and developmental disabilities, such as Prader-Willi syndrome and Angelman syndrome, are subject to more negative portrayal in media, leading to more negative perception, which may impact social opportunity and quality of life. Combined with our finding that the perception of Prader-Willi syndrome follows the ideals of the medical model of disability more closely than the social model, a need for social model of disability training and education for physicians and other medical providers is clear.
对于智力和发育障碍患者而言，他人基于其状况产生的看法往往在其出生前就已开始，并在其整个生命历程中持续影响人际关系、机会和自我认知。搜索引擎结果和新闻媒体可能会以刻板或负面的方式描绘这些状况，而它们往往是这些看法的关键来源。我们的目的是了解搜索引擎结果和现有的新闻媒体如何塑造对某些智力和发育障碍的看法。
我们开发了一项在线李克特量表调查，以测量基于四种智力和发育障碍（脑瘫、唐氏综合征、普拉德-威利综合征和安吉尔曼综合征）的首次搜索引擎结果、图像和新闻标题所产生的看法差异。选择这四种病症是为了比较不太常见的病症（普拉德-威利和安吉尔曼）和更常见的病症（唐氏综合征和脑瘫）。看法问题涉及总体印象以及预期会受到他人看法影响的残疾经历方面。我们通过多个社交媒体平台、在波士顿地区张贴传单以及通过当地社区和朋友的口口相传进行招募。
229人打开了调查问卷，其中125份回复用于分析。在所有变量上，对普拉德-威利综合征的平均回复显著比脑瘫、唐氏综合征和安吉尔曼综合征的回复更负面。对安吉尔曼综合征的回复也比对唐氏综合征的回复更负面。将数据视为连续数据时发现的病症之间的显著差异，在将数据视为有序数据时得到了证实。
鲜为人知的智力和发育障碍，如普拉德-威利综合征和安吉尔曼综合征，在媒体上受到更多负面描绘，导致更多负面看法，这可能会影响社会机会和生活质量。再加上我们的发现，即对普拉德-威利综合征的看法比社会模式更符合残疾医学模式的理念，显然需要为医生和其他医疗服务提供者开展残疾社会模式的培训和教育。
