Understanding access challenges to low vision care for age-related macular degeneration in Germany: results from an integrated synthesis based on experiences from affected individuals and care providers

PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: Our study emphasizes the need for a structured, interdisciplinary rehabilitation approach to improve care for individuals with AMD.