User centered approach to the supra-functional needs of people living with amyotrophic lateral sclerosis (ALS)

Abstract

User-centered design relies upon the appreciation that assistive technology device solutions need to include the functional and supra-functional (e.g., emotional, social, cultural) needs of users. Developing solutions without basing decision-making on both quantitative (functional) and qualitative (supra-functional) needs can lead to imbalanced devices, services, and/or environments. Satisfying both functional and supra-functional needs is the foundation of usercentered design, which in itself relies upon empathic understanding of the person that one is aiming to serve. This paper presents a study of the lived experiences of people living with Amyotrophic Lateral Sclerosis, their caregivers, and members of the healthcare management team from a human-centered perspective in the pursuit of pain points, deeper understanding of the emotional needs, and revelation of opportunities for improving quality of life and human experience through more user-centered design. We focus on user-centered design-thinking research tools (e.g., mood boards, journey maps, personas) to (a) understand the authentic experience of the individual in their vernacular and their terminology, and (b) to support a data rich conversation that focuses upon both functional and supra-functional needs to highlight opportunities for design interventions).