Before the Interface

This chapter explores the innovative development and integration of tailored user research instruments to inform digital health solutions for People Living with Amyotrophic Lateral Sclerosis (PALS) exhibiting characteristics of partial Locked-In Syndrome (LIS). Addressing the complex interplay of motor, cognitive, and emotional impairments typical of this population, the study proposes a synergistic framework combining three adapted instruments: the ALS Functional Rating Scale-Revised (ALSFRS-R/EX), the User Experience Questionnaire Plus (UEQ+), and a bespoke Cognitive-Motor-Emotional (CME) Observation Grid. These instruments were tailored to detect subtle variations in user function, affect, and interaction. Results show how embodied and sensory drawing participatory methods and customisation of instruments, along with semi-structured questionnaire and interviews with caregivers, can yield actionable insights for designing a model for solutions in neurodegenerative or communication-limiting contexts beyond Augmentative and Alternative Communication (AAC).