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P. R. Troyk, M. H. Huyck, F. J. Lane; Responses of Potential Users to the Intracortical Visual Prosthesis: Focus Group Pilot Data. Invest. Ophthalmol. Vis. Sci. 2009;50(13):4228.
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In order to understand how individuals with blindness might respond to receiving a first-generation experimental intracortical visual prosthesis (ICVP), three focus groups have been held with older adults who are totally blind or legally blind.
Focus group procedures were reviewed by the IIT Institutional Review Board. Individuals were recruited through the Chicago Lighthouse for the Blind and Visually Impaired. All interested persons (including professionals) were invited to an education/ information session presented by Dr. Philip Troyk, the IVCP team leader; this session included a 45 minute presentation about the visual system, other types of visual prostheses, and specific information about the design of the ICVP, followed by 45 minutes of questions and answers. From the approximate 50 attendees, 20 applicants were divided into three focus groups. All were sent a CD with the Troyk presentation, for them to review prior to the group meeting. Three groups met, each for two hours; each was audio-videotaped, with the consent of each participant. Group 1 included four women (ages 70-88), all legally blind; Group 2 included two men and one woman, all totally blind (ages 59-67); and Group 3 included three men and three women, one totally blind and five legally blind (ages 60-72). Nine of the 13 participants were African American. Following each group meeting, participants were given $75 in cash.
While systematic coding has not yet been accomplished, several themes have emerged: Individuals who are totally blind, especially when they had a long period of sight, as well as those who are legally blind but sense they are losing their sight, are more interested in the ICVP than those who have partial vision remaining. Other motivations for interest in the ICVP are defining one self as "adventurous" and wishing to be (still) doing something really worthwhile that might benefit blind people in the future, even if it did not work for them. The desire to function as independently as possible was an incentive. Concerns include possible interference with other functions, the availability of rehabilitation services in preparation for the implantation and following up for a substantial period to adjust to the changes (or lack of change), and guidance for family and friends who would also have to adjust to the outcomes. Cosmetic effects were also a concern.
Additional focus groups, and surveys, are planned with participants representative of the broad range of individuals with severe visual impairment. Such data will be valuable as the development of this (and similar) visual prostheses proceeds.
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