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这种情况影响着我生活的方方面面:一项了解患有发展性面孔失认症生活体验的调查。

This condition impacts every aspect of my life: A survey to understand the experience of living with developmental prosopagnosia.

作者信息

Lowes Judith, McGregor Lesley M, Hancock Peter J B, Duchaine Bradley, Bobak Anna K

机构信息

Psychology Division, Faculty of Natural Sciences, University of Stirling, Stirling, Scotland, United Kingdom.

Department of Psychology and Brain Sciences, Dartmouth College, Hanover, New Hampshire, United States of America.

出版信息

PLoS One. 2025 Apr 30;20(4):e0322469. doi: 10.1371/journal.pone.0322469. eCollection 2025.

DOI:10.1371/journal.pone.0322469
PMID:40305451
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12043184/
Abstract

This mixed methods study examined the real-world experiences of living with developmental prosopagnosia (face blindness), a lifelong neurodevelopmental condition that severely affects the ability to recognise faces despite otherwise normal vision, IQ and memory. Twenty-nine UK based adults with confirmed face recognition difficulties completed an online survey describing and quantifying their experiences of living with poor face recognition. Although the majority (62%) of participants reported being able to recognise their immediate family, e.g., parent, partner, or child, strikingly 35% reported being unable to reliably recognise their immediate family members out of context. Even fewer (45%), reported always being able to recognise their three closest friends when encountering them unexpectedly, highlighting that DP commonly affects the recognition of highly familiar faces with whom individuals have close emotional relationships. Furthermore, participants who reported being able or unable to recognise their immediate family showed no significant difference in objective face memory ability. More than two thirds of participants (65.5%) reported being able to recognise fewer than 10 familiar faces (with the most common response being none), far below typical abilities. Thematic framework analysis highlighted how low public, professional, and employer awareness of developmental prosopagnosia presented challenges across multiple domains including seeking diagnosis, social and family relationships and workplaces. Driven largely by concerns about negative evaluation by others, most participants employed a range of highly effortful, though error prone, strategies to disguise and compensate for their face recognition difficulties. Some of the strategies described may help explain why many individuals can perform within typical norms on laboratory face processing tests despite their clear difficulties in everyday life and highlight the need for ecologically valid tests. Participants' highest priorities for future research were improved awareness of developmental prosopagnosia and interventions to improve their face recognition ability.

摘要

这项混合方法研究考察了患有发展性面孔失认症(脸盲症)的现实生活经历,这是一种终身神经发育疾病,尽管视力、智商和记忆力正常,但严重影响面部识别能力。29名来自英国的、已确诊存在面部识别困难的成年人完成了一项在线调查,描述并量化了他们在面部识别能力差的情况下的生活经历。尽管大多数(62%)参与者报告能够认出自己的直系亲属,如父母、伴侣或孩子,但令人惊讶的是,35%的参与者报告在脱离情境时无法可靠地认出自己的直系亲属。更少的人(45%)报告说,当意外遇到三个最亲密的朋友时总能认出他们,这突出表明发展性面孔失认症通常会影响对与个人有密切情感关系的非常熟悉面孔的识别。此外,报告能够或不能认出直系亲属的参与者在客观面部记忆能力上没有显著差异。超过三分之二的参与者(65.5%)报告说能认出的熟悉面孔少于10个(最常见的回答是一个都认不出),远低于正常水平。主题框架分析强调了公众、专业人士和雇主对发展性面孔失认症的低认知度如何在多个领域带来挑战,包括寻求诊断、社会和家庭关系以及工作场所。由于大多担心被他人负面评价,大多数参与者采用了一系列费力但容易出错的策略来掩饰和弥补他们的面部识别困难。所描述的一些策略可能有助于解释为什么许多人尽管在日常生活中明显存在困难,但在实验室面部处理测试中仍能达到正常标准,并突出了对具有生态效度测试的需求。参与者对未来研究的首要优先事项是提高对发展性面孔失认症的认识以及改善他们面部识别能力的干预措施

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/69e6/12043184/444cc67b4c9a/pone.0322469.g007.jpg
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