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.