PARENT PERSPECTIVES ON DIAGNOSIS OF AND SERVICES FOR CHILDREN WITH CORTICAL VISUAL IMPAIRMENT

Medical advances in recent years have increased survival rates of infants born prematurely and/or infants and children that present with life-threatening conditions (Good et al., 1994; Khetpal & Donahue, 2007; Murphy & Carbone, 2011). These increased survival rates are associated with an increase in the number of children who have severe and/or multiple disabilities, including those conditions that are associated with cortical visual impairment. Children with typical or nearly typical eye exams, but having observable visual impairment are those generally diagnosed with cortical visual impairment, or CVI (Jan, Groenveld, Sykanda, & Hoyt, 1987). Delayed or lack of diagnosis of CVI can lead to missed opportunities for learning, and especially missed sensitive periods during which recovery can occur faster (Hubel & Wiesel, 1970; Roman-Lantzy, 2018). Without diagnosis, children may not be eligible for funding assistance for educational materials (American Printing House for the Blind, n.d.b). The purpose of this study was to explore parents’ experiences in getting a diagnosis of CVI for their children. For example, whether there were lapses in time between suspected vision difficulties and diagnosis, and what information was provided when diagnosis was obtained. The research questions guiding this investigation included: What are parents’ experiences in seeking a diagnosis for their child’s suspected vision challenges? What needs do parents recall related to information and supports while seeking a diagnosis for their child’s suspected vision challenges? What kind of information is offered or readily available to parents upon diagnosis of CVI? The primary data source for this study was interviews with parents of children having diagnosed CVI. Secondary data sources included interviews with ophthalmologists, teachers of the visually impaired, and records review