Expectations and Concerns Emerging from Experiences with Assistive Technology for ALS Patients

• Published in: Universal Access in Human-Computer Interaction. Theory, Methods and Tools Vol. 11572; pp. 57 - 68
• Main Authors: Eicher, Cornelia, Kiselev, Jörn, Brukamp, Kirsten, Kiemel, Diana, Spittel, Susanne, Maier, André, Oleimeulen, Ursula, Greuèl, Marius
• Format: Book Chapter
• Language: English
• Published: Switzerland Springer International Publishing AG 2019; Springer International Publishing
• Series: Lecture Notes in Computer Science
• Subjects: Amyotrophic lateral sclerosis; Assistive technology and devices; ATD; Concerns and weaknesses; Expectations and strengths
• ISBN: 3030235599; 9783030235598
• ISSN: 0302-9743; 1611-3349
• DOI: 10.1007/978-3-030-23560-4_5

Amyotrophic lateral sclerosis (ALS) is a neurologic disease effecting a gradual loss of physical body functionalities with usually unaltered cognitive functionality. Due to the lack of autonomy, affected persons become dependent on the support of third parties, such as relatives, friends and informal and formal caregivers. Autonomy and self-determination play a crucial role in the lives of ALS patients and can partly be maintained by the implementation of assistive technologies and devices (ATD). In addition to life-supporting measures, ATD can support ALS patients in their mobility, communication and help them control their domestic environment, and thus foster social participation and autonomy. However, little is known about expectations and concerns of patients and their informal and formal caregivers regarding ATD. We therefore conducted semi-structured interviews as part of a mixed-methods requirements analysis to evaluate how ATD influences the lives and living spaces of patients with ALS as well as their family members and caregivers, and additionally their expectations and concerns raised by ATD. The presented study research was conducted as part of the research and development project “ROBINA - robot-assisted services for patients with ALS”.