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“人们都只看外表”:一个针对患有默比厄斯综合征青少年的焦点小组

"People are all about appearances": A focus group of teenagers with Moebius Syndrome.

作者信息

Bogart Kathleen R

机构信息

Oregon State University, USA

出版信息

J Health Psychol. 2015 Dec;20(12):1579-88. doi: 10.1177/1359105313517277. Epub 2014 Jan 14.

Abstract

This focus group study examined the social experiences of 10 adolescents aged 12-17 years with Moebius Syndrome, a rare condition involving congenital facial paralysis. Content analysis revealed five themes: social engagement/disengagement, resilience/sensitivity, social support/stigma, being understood/misunderstood, and public awareness/lack of awareness of Moebius Syndrome. Compared to previous research on adults with Moebius Syndrome, adolescents were more likely to experience bullying and social strain. Like adults, teenagers displayed resilience and communication skills. Greater public awareness is key to reducing the stigma associated with this condition, and social skills programs should be developed to support those who struggle with social functioning.

摘要

这项焦点小组研究调查了10名年龄在12至17岁之间患有默比乌斯综合征的青少年的社交经历,默比乌斯综合征是一种涉及先天性面瘫的罕见病症。内容分析揭示了五个主题:社交参与/脱离、适应力/敏感、社会支持/污名、被理解/被误解,以及公众对默比乌斯综合征的认知/缺乏认知。与之前对患有默比乌斯综合征的成年人的研究相比,青少年更容易遭受欺凌和社会压力。与成年人一样,青少年也表现出适应力和沟通技巧。提高公众认知是减少与这种病症相关污名的关键,并且应该制定社交技能项目来支持那些在社交功能方面存在困难的人。

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