Sonali Dave, Lee Jones, Matthew Lee, Lara Ditzel-Finn, Claire Castle, Nikki Heinze, Judith Potts, Mariya Moosajee, Renata S M Gomes
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引用次数: 0
Abstract
Background: Charles Bonnet syndrome (CBS) refers to the experience of visual hallucinations occurring secondary to sight loss. Although there is an increasing amount of research on this phenomenon, CBS remains a lesser-known outcome of visual impairment, with limited research into the impact on the patient.
Objectives: To explore the experiences and opinions of visually impaired military veterans with CBS regarding the impact of visual hallucinations.
Design: Semi-structured qualitative interviews.
Methods: Forty-six telephone interviews were conducted with members of Blind Veterans UK, a charity for visually impaired ex-service men and women. One-hundred and fifteen individuals at the charity with CBS were identified and invited to a semi-structured interview (participation rate - 40%). Qualitative data was transcribed and analysed using thematic analysis.
Results: Four overarching themes were identified: (1) impact of CBS (2) understanding and management of CBS (3) awareness of CBS (4) recommendations. Negative impact of CBS included feelings of fear, annoyance and disruptions to daily life and quality of life. Negative appraisal of CBS was not necessarily related to negative hallucination content. Participants expressed the value of increased awareness amongst patients and health care professionals. Knowledge and understanding of CBS provided reassurance and was considered an effective strategy to mitigate the negative impact of the condition.
Conclusion: Regardless of hallucination content, CBS has a substantial impact on the lives of people with visual impairment. Increased awareness and information can help to support individuals to manage their CBS more effectively. However, the findings from this study cannot be generalized to people without a military background so further research is required to understand and optimize support for military veterans and civilians with CBS.
背景:查尔斯-波奈综合征(Charles Bonnet syndrome,CBS)是指因视力丧失而产生的视觉幻觉。尽管对这一现象的研究越来越多,但 CBS 仍是一种鲜为人知的视力障碍结果,对患者影响的研究也很有限:目的:探讨患有 CBS 的视力受损退伍军人对视幻觉影响的体验和看法:设计:半结构式定性访谈:对英国盲人退伍军人组织(Blind Veterans UK)的成员进行了 46 次电话访谈,该组织是一个为视力受损的退伍军人服务的慈善机构。该慈善机构确定了 115 名患有 CBS 的个人,并邀请他们参加半结构化访谈(参与率为 40%)。采用主题分析法对定性数据进行转录和分析:结果:确定了四大主题:(1) CBS 的影响 (2) 对 CBS 的理解和管理 (3) 对 CBS 的认识 (4) 建议。CBS 的负面影响包括恐惧感、烦扰感以及对日常生活和生活质量的干扰。对 CBS 的负面评价并不一定与负面幻觉内容有关。参与者表示,提高患者和医护人员对 CBS 的认识很有价值。对 CBS 的了解和认识可让患者安心,并被认为是减轻该病症负面影响的有效策略:无论幻觉内容如何,CBS 都会对视力障碍患者的生活产生重大影响。提高对 CBS 的认识并增加相关信息,有助于帮助他们更有效地管理自己的 CBS。然而,这项研究的结果不能推广到没有军队背景的人身上,因此需要进一步研究,以了解并优化对患有 CBS 的退伍军人和平民的支持。