Human Computer Interface for all: Understanding Barriers and Bridges in Technology to bring Equity to Parkinson’s Patients

Abstract

This study was designed to investigate the daily challenges that Parkinson’s patients face and understand how they are related to technology and communication. A human-centered design was used in conjunction with the first three stages of the Design Thinking Process to empathize, define, and ideate. Nine participants were chosen who had all been diagnosed with Parkinson’s disease for at least two years. Participants were interviewed and questioned about their daily struggles at home and with technology relating to communication. Their interviews were coded and themed, and the results were grouped into five major themes that included symptoms, daily challenges, values, communication, and technology. The results indicated that all participants struggled with communication on multiple levels, including in person, written, verbally, and virtually. Voice command software was deemed useful only to those who were in the early stages of the disease. Virtual communication was found to be helpful to those that were aware of its capabilities and used it on a regular basis. Social interaction and a sense of community were determined to be key issues to help participants feel accepted and fight depression. Pre-diagnosis lifestyle and values were found to correlate with post-diagnosis symptom experiences, indicating that an individualized approach focused on patients’ values and pre-diagnosis lifestyles could be more beneficial than focusing on how to slow symptom progression. This exploratory qualitative study is the first stage of a multi-phase project encompassing a mixed methods approach. These findings will be used to lay the foundation for a solid understanding of what Parkinson’s patients struggle with and how to begin development of a quantitative communication instrument for fighting Parkinson’s disease.