Abstract
Amyotrophic Lateral Sclerosis (ALS), or motor neuron disease (MND), is a progressive neurodegenerative disorder that results in the loss of muscle control and function. To manage the daily activities of people with ALS, Assistive Technologies (ATs) are essential. However, many current ATs available in the market do not cater to the individualised and rapidly changing needs of people with ALS, and frequent procurement can take a financial toll on the family. This practice-based PhD project is developing custom-made ATs to maximise independence and enhance the quality of life of people with ALS. Through leveraging digital fabrication techniques, faster turnaround times and bespoke designs can be created tailored to the specific needs and limitations of People with ALS. This research is part of a joint PhD between IIT-Bombay, India and Monash University, Australia, and provides a platform to understand the users in two different cultural and economic contexts. Allowing for a broader analysis of the needs of people with ALS and their caregivers, leading to more effective and impactful solutions. This project began with a comprehensive user study of Indian participants which helped define the scope of the PhD. The findings indicate that people with ALS use an AT device for a short time, and it becomes irrelevant due to the disease’s progressive nature. Hence, it is essential that devices are ‘purpose-built’, ‘relatively affordable,’ and ‘readily available’ for people with ALS. We are currently in the process of conducting a similar study in the Australian context, and we aim to compare and contrast our understanding in order to perform a broader analysis of people with ALS and their caregivers. Through interviews and Contextual Inquiry, we aim to identify the individual needs of people with ALS and develop bespoke AT devices that are more nuanced, timely, accessible, and affordable than currently available ATs. Validation of the developed ATs will be an integral part in the later stage of this PhD which will be done by testing and evaluating their effectiveness from the stakeholders' perspective, including people with ALS, caregivers, and healthcare professionals. Feedback will be gathered through interviews and checklists like QUEST to refine the devices and enhance their effectiveness in maximising independence and enhancing the quality of life of people with ALS. In the process, we will also identify and report the barriers and facilitators of using digital fabrication over conventional mass manufacturing for making ATs for people with individualised and varying needs. The knowledge gained from this project will inform a design framework for developing AT devices for a wider range of people with individualised and varying needs, not just for people with ALS. This framework has the potential to improve the efficacy of assistive technologies and enable future designers to create bespoke ATs more rapidly and tailored to people with individualised needs. By using digital fabrication, there is a potential to improve the timely delivery of appropriate AT devices for people with ALS and enhance their quality of life and independence.
Keywords
Littering behaviour, Mindful design, behaviour change, design, sustainbility.
DOI
https://doi.org/10.21606/iasdr.2023.831
Citation
Bohre, Y., Page, R.,and Joshi, P.(2023) Digitally fabricated Design Interventions for ALS/MND, in De Sainz Molestina, D., Galluzzo, L., Rizzo, F., Spallazzo, D. (eds.), IASDR 2023: Life-Changing Design, 9-13 October, Milan, Italy. https://doi.org/10.21606/iasdr.2023.831
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This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License
Conference Track
doctoralpapers
Included in
Digitally fabricated Design Interventions for ALS/MND
Amyotrophic Lateral Sclerosis (ALS), or motor neuron disease (MND), is a progressive neurodegenerative disorder that results in the loss of muscle control and function. To manage the daily activities of people with ALS, Assistive Technologies (ATs) are essential. However, many current ATs available in the market do not cater to the individualised and rapidly changing needs of people with ALS, and frequent procurement can take a financial toll on the family. This practice-based PhD project is developing custom-made ATs to maximise independence and enhance the quality of life of people with ALS. Through leveraging digital fabrication techniques, faster turnaround times and bespoke designs can be created tailored to the specific needs and limitations of People with ALS. This research is part of a joint PhD between IIT-Bombay, India and Monash University, Australia, and provides a platform to understand the users in two different cultural and economic contexts. Allowing for a broader analysis of the needs of people with ALS and their caregivers, leading to more effective and impactful solutions. This project began with a comprehensive user study of Indian participants which helped define the scope of the PhD. The findings indicate that people with ALS use an AT device for a short time, and it becomes irrelevant due to the disease’s progressive nature. Hence, it is essential that devices are ‘purpose-built’, ‘relatively affordable,’ and ‘readily available’ for people with ALS. We are currently in the process of conducting a similar study in the Australian context, and we aim to compare and contrast our understanding in order to perform a broader analysis of people with ALS and their caregivers. Through interviews and Contextual Inquiry, we aim to identify the individual needs of people with ALS and develop bespoke AT devices that are more nuanced, timely, accessible, and affordable than currently available ATs. Validation of the developed ATs will be an integral part in the later stage of this PhD which will be done by testing and evaluating their effectiveness from the stakeholders' perspective, including people with ALS, caregivers, and healthcare professionals. Feedback will be gathered through interviews and checklists like QUEST to refine the devices and enhance their effectiveness in maximising independence and enhancing the quality of life of people with ALS. In the process, we will also identify and report the barriers and facilitators of using digital fabrication over conventional mass manufacturing for making ATs for people with individualised and varying needs. The knowledge gained from this project will inform a design framework for developing AT devices for a wider range of people with individualised and varying needs, not just for people with ALS. This framework has the potential to improve the efficacy of assistive technologies and enable future designers to create bespoke ATs more rapidly and tailored to people with individualised needs. By using digital fabrication, there is a potential to improve the timely delivery of appropriate AT devices for people with ALS and enhance their quality of life and independence.