"它们是有着类似人类特征的令人毛骨然的生物":查尔斯·波内特综合征中儿童对视觉幻觉的经验 - - 一项定性研究
Lee Jones1, Lara Ditzel-Finn2, Leanne McDonald3
1Institute of Ophthalmology, University College London, London, UK.
Archives of disease in childhood
|January 9, 2025
概括
查尔斯·波内特综合征 (CBS) 在视力丧失的儿童中引起视觉幻觉. 了解CBS和提供支持对于管理它对患者和家人的影响至关重要.
科学领域:
- 眼科医生 眼科 眼科
- 儿科 儿科 儿科
- 心理学 心理学 心理学
背景情况:
- 查尔斯·波内特综合征 (CBS) 涉及到视力障碍的次要视觉幻觉.
- 对于儿童的CBS现象学,情绪影响和支持需求的理解还不够充分.
研究的目的:
- 探索儿童与CBS及其家人的生活经历.
- 评估儿童CBS患者的情绪影响和支持需求.
主要方法:
- 一项使用半结构面试进行的定性研究,对在英国被诊断患有遗传性视网膜疾病和CBS的儿童 (7-15岁) 和他们的父母进行了半结构面试.
- 采用主题分析来确定关键主题.
主要成果:
- 五个主题出现了:诊断旅程,幻觉现象学,影响,管理和支持经验.
- CBS严重扰乱了儿童的日常生活,有限的意识导致了父母的负面医疗体验.
- 了解CBS是成功自我管理的一个关键因素.
结论:
- 在儿童及其家人中管理CBS是具有挑战性的,幻觉加剧了慢性视力障碍的困难.
- 医疗保健提供者的有效支持对于缓解恐惧和促进心理健康至关重要.
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