The IRMA Community
Newsletters
Research IRM
Click a keyword to search titles using our InfoSci-OnDemand powered search:
|
Before the Interface: Designing User Research Instruments and Methods to Enable Digital Health Innovation for ALS Patients With Partial Locked-In Syndrome
|
|
Author(s): Bruno Giesteira (Universidade do Porto, Portugal), Eliana Santiago (University of Porto, Portugal), Andreia Sousa (Lusófona University, Portugal), Pedro Amado (University of Porto, Portugal)and Filipe Gonçalves (Faculty of Health Sciences, University of A Coruña, Spain)
Copyright: 2026
Pages: 32
Source title:
Reshaping Health Promotion and Disease Prevention Through Digital Innovation
Source Author(s)/Editor(s): Sónia Remondes Costa (University of Trás-os-Montes and Alto-Douro, Vila Real, Portugal)and Jorge Remondes (CEOS.PP, ISCAP, Polytechnic of Porto, Portugal)
DOI: 10.4018/979-8-3373-3531-5.ch013
Purchase
|
Abstract
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).
Related Content
|
Muhammad Farooq Umer.
© 2026.
28 pages.
|
|
Awesh Khati, Anindita Das, Debajit Karmakar.
© 2026.
26 pages.
|
|
Minhaj Ahmed Qidwai, Mohammad Kabir Gawhari.
© 2026.
20 pages.
|
|
Fozia Asif, Minhaj Ahmed Qidwai.
© 2026.
14 pages.
|
|
Saurabh Chandra, Bhupinder Singh.
© 2026.
20 pages.
|
|
Anshika Tyagi, Vishal Jain.
© 2026.
26 pages.
|
|
Saleema Gulzar, Samina Subzali Vertejee, Tazeen Saeed Ali, Rozina Karmaliani.
© 2026.
16 pages.
|
|
|