A Narrative Medicine Approach to Navigating Barriers to the Diagnosis of Pediatric Neurotrophic Keratopathy

IF 4.1 1区医学 Q1 OPHTHALMOLOGY

American Journal of Ophthalmology Pub Date : 2025-03-31 DOI:10.1016/j.ajo.2025.03.043

Shadia Tannir , Chilando Mulenga , Khoa Tran , Asim Ali , Charline Boente , Gregory H Borschel

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引用次数: 0

Abstract

OBJECTIVE

Neurotrophic keratopathy (NK) is a rare disease characterized by the loss of corneal innervation and increased vulnerability to injury. The diagnosis and treatment of NK can be challenging for pediatric patients and their caregivers. This study explores the experiences of caregivers navigating the diagnostic and treatment journey of pediatric patients with neurotrophic keratopathy.

DESIGN

This study is a qualitative study using semi-structured interviews.

SUBJECTS

Ten caregivers of pediatric patients with NK who had undergone corneal neurotization (CN) surgery.

METHODS

Caregivers were interviewed about their experiences related to the diagnostic process, treatment challenges, lifestyle changes, and the impact of CN surgery. Interviews were recorded, transcribed, and analyzed using an inductive-deductive approach to identify recurring themes.

MAIN OUTCOMES

Caregiver experiences and perceptions of diagnostic delays, information-seeking behaviors, lifestyle changes, and the effects of CN surgery on corneal health and quality of life.

RESULTS

Five key themes emerged from the analysis: (1) Delays in diagnosis due to insufficient specialist knowledge; (2) Caregivers' proactive efforts in seeking information; (3) Substantial lifestyle changes required by NK; (4) The impact of CN surgery on corneal health and quality of life; and (5) Variability in healthcare experiences, highlighting the need for effective communication. Caregivers expressed frustration with diagnostic delays and highlighted their reliance on external support networks.

CONCLUSIONS

This study illustrates the need for enhanced awareness among clinicians about NK and the benefits of narrative medicine in fostering caregiver-provider relationships. The challenges reported by families navigating NK inform strategies that may improve diagnosis and treatment of NK.

查看原文本刊更多论文

儿童神经营养性角膜病变诊断障碍的叙事医学方法。

目的：神经营养性角膜病变（NK）是一种罕见的疾病，其特征是角膜神经支配的丧失和对损伤的易感性增加。NK的诊断和治疗对儿科患者和他们的护理人员来说是具有挑战性的。本研究探讨护理人员在小儿神经营养性角膜病变的诊断和治疗过程中的经验。设计：本研究采用半结构化访谈法进行定性研究。研究对象：10名接受角膜神经化手术的小儿NK患者的护理人员。方法：对护理人员进行访谈，了解他们与CN手术的诊断过程、治疗挑战、生活方式改变和影响相关的经历。访谈记录，转录和分析使用归纳演绎的方法来确定反复出现的主题。主要结局：护理者对诊断延迟、信息寻求行为、生活方式改变的体验和感知，以及CN手术对角膜健康和生活质量的影响。结果：从分析中得出五个关键主题：(1)由于专业知识不足导致诊断延误；(2)照顾者主动寻求信息的努力；(3) NK要求的生活方式的实质性改变；(4) CN手术对角膜健康及生活质量的影响；(5)医疗体验的可变性，强调了有效沟通的必要性。护理人员对诊断延误表示失望，并强调了他们对外部支持网络的依赖。结论：本研究说明需要提高临床医生对NK的认识和叙事医学在培养照顾者-提供者关系中的好处。报告的挑战由家庭导航NK通知策略，可以提高NK的诊断和治疗。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

American Journal of Ophthalmology 医学-眼科学

CiteScore

9.20

自引率

7.10%

发文量

406

审稿时长

36 days

期刊介绍： The American Journal of Ophthalmology is a peer-reviewed, scientific publication that welcomes the submission of original, previously unpublished manuscripts directed to ophthalmologists and visual science specialists describing clinical investigations, clinical observations, and clinically relevant laboratory investigations. Published monthly since 1884, the full text of the American Journal of Ophthalmology and supplementary material are also presented online at www.AJO.com and on ScienceDirect. The American Journal of Ophthalmology publishes Full-Length Articles, Perspectives, Editorials, Correspondences, Books Reports and Announcements. Brief Reports and Case Reports are no longer published. We recommend submitting Brief Reports and Case Reports to our companion publication, the American Journal of Ophthalmology Case Reports. Manuscripts are accepted with the understanding that they have not been and will not be published elsewhere substantially in any format, and that there are no ethical problems with the content or data collection. Authors may be requested to produce the data upon which the manuscript is based and to answer expeditiously any questions about the manuscript or its authors.