Abstract
Purpose: :
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, while well intentioned, are frequently derived from a lack of understanding of the potential recipients’ emotional state and determination. It is the goal of this study to interview nine of the recipients of the Dobelle cortical visual implant and have them describe their motivation to participate in the research, the perception of risks, their decision-making process, and their experiences about how phosphenes were used for their functional benefit. The results of the interviews will be used to advance the understanding of the experiences of former recipients of a cortical prosthesis, and to inform the development of a recruitment and screening protocol, including an informed consent document, for future visual prosthesis recipients.
Methods: :
The protocol to conduct in-depth qualitative interviews of Dobelle subjects was approved by the IIT Institutional Review Board. Informed consent was obtained from the participants after the nature of the study and possible consequences were discussed. A total of nine individuals were located. Once located, each Dobelle subject was invited to participate in an interview designed so they could describe their experiences. The interviews were conducted in the participant’s home, or a nearby meeting room at a church or hotel. The interviews were video and audio taped.
Results: :
Analyses of the transcribed interviews reveal motivation that is consistent with that documented elsewhere for prospective volunteers. Altruism, restoration of vision and exploration of "ground breaking" research are among the top reasons for participating. While some of the recipients reported no functional benefit from the implant, some participants described perceiving a range of phosphenes with as few at seven and as many as 119. Participants describe functional benefits of the phosphenes and their experience of prosthetic vision.
Conclusions: :
The experiences of former implantable device users should be a critical component of every implantable device project. The Dobelle recipients interviewed in this study have validated the findings from our previous studies, particularly with respect to participant motivation. These interview results are being used to develop a framework to prepare for future visual prosthesis human implantation trials.
Keywords: quality of life • visual cortex