Thier Anne, Wolfram Christian, Witt Ursula, Zeitz Oliver, Himmelsbach Ines, Holmberg Christine
Institute of Social Medicine and Epidemiology, Brandenburg Medical School Theodor Fontane, Brandenburg an der Havel, Germany.
Department of Ophthalmology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Disabil Rehabil. 2025 May 1:1-16. doi: 10.1080/09638288.2025.2493213.
To understand the reasons for the inconsistent and often arbitrary access to low vision care for people with age-related macular degeneration (AMD), this article examines the challenges of access to low vision care from the perspectives of people with AMD, ophthalmologists, opticians and low vision professionals.
This article is based on a mixed-methods study that incorporated narrative semi-structured interviews to explore the experiences of individuals diagnosed with AMD, as well as online surveys to evaluate ophthalmologists' and opticians' knowledge of low vision services and expert discussions with low vision professionals. An integrated synthesis approach was employed.
Challenges in accessing low vision care can be categorized into four levels: individual, social, infrastructural, and provider. Individual challenges included information needs, perceptions of support services as stigmatizing or unhelpful, and immobility of the affected individuals. Social networks play a crucial role in supporting or hindering access to care. Limited service availability poses a significant infrastructural challenge. Provider-level issues include communication barriers, knowledge gaps, and insufficient collaboration among low vision providers.
Our study emphasizes the need for a structured, interdisciplinary rehabilitation approach to improve care for individuals with AMD.
为了解年龄相关性黄斑变性（AMD）患者获得低视力护理的机会不一致且常常随意的原因，本文从AMD患者、眼科医生、配镜师和低视力专业人员的角度审视了获得低视力护理的挑战。
本文基于一项混合方法研究，该研究纳入了叙事性半结构化访谈以探索被诊断为AMD的个体的经历，以及在线调查以评估眼科医生和配镜师对低视力服务的了解情况，并与低视力专业人员进行专家讨论。采用了综合综合方法。
获得低视力护理的挑战可分为四个层面：个体层面、社会层面、基础设施层面和提供者层面。个体挑战包括信息需求、认为支持服务有污名化或无用的观念，以及受影响个体的行动不便。社交网络在支持或阻碍获得护理方面起着关键作用。服务可及性有限构成了重大的基础设施挑战。提供者层面的问题包括沟通障碍、知识差距以及低视力服务提供者之间协作不足。
我们的研究强调需要一种结构化的跨学科康复方法来改善对AMD患者的护理。
