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P. R. Troyk, M. Huyck, F. J. Lane; Psychological Assessment of Potential Volunteers for the Intracortical Visual Prosthesis: Focus Groups and Former Visual Prosthesis Recipient Interview Data. Invest. Ophthalmol. Vis. Sci. 2010;51(13):2027.
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Understanding the potential benefits of a visual prosthesis for individuals with blindness requires an understanding of their needs and sensory substitution expectations. Our research suggests that opinions of scientific researchers, concerning the motivations and expectations of potential visual prosthesis recipients, are frequently derived from a lack of understanding of the potential recipients’ emotional state and determination. It is the goal of this study to solicit feedback from potential users, and former recipients of, visual prostheses in order to sophisticate our understanding of how to configure a study that involves implantation of a visual prosthesis in a human volunteer.
Focus group and former visual prosthesis interview procedures were approved by the IIT Institutional Review Board. In order to form focus groups, individuals with total (or near total) blindness were invited to an oral educational session presented by Dr. Philip Troyk, the intracortical visual prosthesis team leader. Following the educational session, attendees were recruited to participate in focus groups lead by Dr, Huyck and Dr, Lane. The focus group sessions were video taped. Each participant of the focus groups were given $75 in cash. Interviews with former visual prostheses recipients were arranged as a means of understanding their pre- and post-implant experiences.
Analyses of the focus group video tapes shows a high level of understanding about the nature of the technology used in the proposed visual prosthesis. The focus group participants, quickly grasped the fundamental concepts needed to understand the visual prosthesis technology. In some cases, the cosmetic nature of the external hardware required for visual prosthesis use was a notable concern. Results from interviews with recipients of optic nerve and cortical visual prostheses, combined with the focus group data help to create a new framework for shaping visual prosthesis technology and proposed human implantation trials.
Solicitation of opinions from potential and former visual prosthesis users should be a critical component of every visual prosthesis project. The ultimate success of the research may depend upon a high level of motivation and stamina among the volunteers. Only by understanding the expectations and potential benefits for human trials can the embryonic technology for visual prostheses be deployed into a broader use.
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