Healthcare Robotics Control for Upper Limb Paralysis in Neuromuscular Diseases: User-Centered Design for Responsible Technology Development

Abstract Neuromuscular diseases (NMDs) result in a progressive loss of motor functions and necessitate a wide range of technological aids to help paralyzed patients perform activities of daily living. A requirements analysis revealed that robotic assistance possesses the potential to exert a significant impact on the quality of life for NMD patients. Nevertheless, patients may experience major difficulties executing and steering robot actions. Consequently, a manufacturer-independent robot control system was developed to support patient care with an intuitive graphical user interface. The clinical characteristics of the potential users highlight the paradigmatic character of this vulnerable group for robotic assistance as evidenced during the development stages of the requirements analysis, in interim and final evaluations, as well as for the empirical identification of ethical and social implications. Under the restrictive conditions of the COVID-19 pandemic, a remote control approach offered the technical solution to conduct studies with NMD patients, while protecting them from infection risks. Research and development for robotic assistance promise to positively impact on severely physically disabled patients and their caregivers.