Identifying Assistive Technology Design Opportunities for Living with Amyotrophic Lateral Sclerosis

Document Type

Article

Publication Title

Design for Health

Abstract

Incorporating functionality into a design outcome without empathically understanding the needs of the end user may lead to underused, misused, and/or abandoned assistive devices. This pilot analysis utilized an interdisciplinary team of designers, engineers, and clinicians to holistically explore the lived experiences of users with amyotrophic lateral sclerosis (ALS) and determine their ever-changing needs regarding usable design opportunities. Thirteen individuals were interviewed in this study, consisting of individuals with ALS, caregivers, and clinicians. Persona-based qualitative analyses were used to evaluate semi-structured interviews and determine potential areas for design opportunities. Personas were developed individually for individuals with ALS and caregivers and through a consensus for clinicians. Photographs from the homes of participants with ALS were also evaluated to help develop potential design opportunities. Four key principles emerged: (1) maintaining normalcy, (2) maintaining independence, (3) efficient time-management spent focusing on ALS (timing), and (4) increasing dignity of the individual with ALS. Using these principles, the research team proposes the need for comfortable chairs (normalcy), automated bedding (independence), instructional mobile applications (timing), and covert voice amplifiers (dignity). Future developers of assistive technology may benefit from developing these technologies alongside individuals with ALS to ensure enhanced usability and adoption.

DOI

10.1080/24735132.2025.2506308

Publication Date

5-31-2025

Keywords

Empathic design research, amyotrophic lateral sclerosis, emotional needs, human-centered design, user experience, assistive technologies

ISSN

2473-5140

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