Contextual Studies to Understand the Problems and Needs of People Living with ALS/MND through Stakeholder Workshops in INDIA

ALS/MND (amyotrophic lateral sclerosis/motor neurone disease) are currently incurable, progressive neurodegenerative disorder of nerve cells in the brain and spinal cord. Needs of people who have ALS/MND differ, in part as per their disease progression stage. To understand concerns of patients and allied stakeholders, Lab4Living(L4L), School of Design at IDC, IIT Bombay, and Neurogen, a clinic with dedicated Neurorehabilitation resources, collaborated with a focus on developing new assistive technology (AT) and inclusive designs for people living with ALS/MND in India. The research comprised local contextual investigations through two participatory workshops with support of Asha Ek Hope Foundation, and involved people living with ALS/ MND, their caregivers, Occupational Therapists and Design Researchers. The paper describes methods used, insights built, and outcomes to date including concept designs for new AT and inclusive designs, impacting on the Design curriculum in India , informed by this study, that have since progressed to user evaluation stages of R&D processes. Authors gained insights about why the design of products, and their facilitating services, for ALS/MND patients may differ from a standard product/service development process. We suggest products designed for ALS/MND should co-exist as a part of a designed ecosystem. This ecosystem could facilitate sharing of products amongst patient populations, while addressing concerns of manufacturing low volumes of batch production items at an affordable cost for all socioeconomic groups. The design of this ecosystem and its interconnectedness may be a critical factor in making products feasible and sustainable. The project was funded by Sheffield Hallam University (SHU) Global Challenge Research Fund (GCRF) and Expanding Excellence England (‘E3 Research England’).