Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease where the brain stops signalling muscles to move, resulting in loss of muscle control and function. Many current assistive technologies (AT) fail to meet the highly individualised and rapidly evolving needs of people with ALS. This research employs a user-centred approach and contextual design methodologies to develop AT tailored to these needs. The study aimed to identify both early and late-stage ALS patients’ specific challenges. Through thematic analysis of data from 28 participants, including patients, caregivers and clinicians, critical intervention areas were highlighted, such as digital input devices, personal physiotherapy equipment, AT to prevent foot drop, etc. The contextual inquiry revealed varying attitudes toward AT adoption, necessitating flexible solutions. Findings were translated into design briefs for graduate design projects at the IDC School of Design, IIT Bombay, focusing on creating solutions that evolve with ALS progression. Initial user testing of these prototypes indicated positive outcomes, reinforcing the potential of contextual design in creating meaningful AT solutions. The research emphasised the early introduction of AT to allow cognitive acclimation before physical necessity. It underscored a holistic approach to designing for ALS, considering physical, emotional and social well-being. Additionally, the study highlighted individuals’ profound trust in clinicians, emphasising the importance of involving clinicians as partners in the design process. These findings challenge traditional design perspectives and provide a foundation for creating meaningful assistive solutions tailored to the unique experiences of individuals living with ALS.

错误:搜索内容不能为空,请输入英文关键词
错误:关键词超出字数限制,请精简
高级检索

Beyond Symptoms: A Contextual Design Approach for Designing Assistive Technology (AT) for People with Amyotrophic Lateral Sclerosis (ALS)

  • Yash Bohre,
  • Rowan Page,
  • Purba Joshi

摘要

Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease where the brain stops signalling muscles to move, resulting in loss of muscle control and function. Many current assistive technologies (AT) fail to meet the highly individualised and rapidly evolving needs of people with ALS. This research employs a user-centred approach and contextual design methodologies to develop AT tailored to these needs. The study aimed to identify both early and late-stage ALS patients’ specific challenges. Through thematic analysis of data from 28 participants, including patients, caregivers and clinicians, critical intervention areas were highlighted, such as digital input devices, personal physiotherapy equipment, AT to prevent foot drop, etc. The contextual inquiry revealed varying attitudes toward AT adoption, necessitating flexible solutions. Findings were translated into design briefs for graduate design projects at the IDC School of Design, IIT Bombay, focusing on creating solutions that evolve with ALS progression. Initial user testing of these prototypes indicated positive outcomes, reinforcing the potential of contextual design in creating meaningful AT solutions. The research emphasised the early introduction of AT to allow cognitive acclimation before physical necessity. It underscored a holistic approach to designing for ALS, considering physical, emotional and social well-being. Additionally, the study highlighted individuals’ profound trust in clinicians, emphasising the importance of involving clinicians as partners in the design process. These findings challenge traditional design perspectives and provide a foundation for creating meaningful assistive solutions tailored to the unique experiences of individuals living with ALS.