Living with Ultra-Low Vision: An Inventory of Self-Reported Visually Guided Activities by Individuals with Profound Visual Impairment

PURPOSE: To understand how individuals with profound visual impairment (ultra-low vision, ULV) use their remaining vision. METHODS: Forty-six participants with ULV (visual acuity ≤ 200/500 in the better seeing eye) were divided into nine focus groups (4–6 individuals per group) and met either in person (n = 2) or over the phone (n = 7). Discussions were guided by the Massof Activity Inventory. Audio recordings were transcribed and analyzed for visual activities that were then classified along two visual categorizations – functional domains and visual aspects. The latter was based on a Grounded Theory classification of participants' descriptions. RESULTS: Seven hundred sixty activities were reported. By functional domain they were classified as reading/shape recognition (10%), mobility (17%), visual motor (24%), and visual information gathering (49%). By visual aspects, they were classified as contrast (43%), luminance (17%), environmental lighting (9%), familiarity (3%), motion perception (5%), distance (7%), size (9%), eccentricity (5%), depth perception (1%), and other/miscellaneous (1%). More than one visual aspect may be critical for an activity: participants reported that contrast plays a role in 68% of visual activities, followed by luminance (27%), environmental lighting (14%), and size (14%). CONCLUSIONS: Visual aspects, primarily contrast, were found to be critical factors enabling ULV individuals to perform visual activities. TRANSLATIONAL RELEVANCE: This inventory, part of the Prosthetic Low Vision Rehabilitation (PLoVR) curriculum development study, provides a unique perspective into the visual world of the nearly blind, and can be used in the development of a Visual Functioning Questionnaire (VFQ) and visual performance measures suited for ULV populations.