Designing Technology for Individuals with Spinal Cord Injury to Facilitate Self-care Adherence

In this project, we collaborated with the Spinal Cord Injury experts of Craig H. Neilsen Rehabilitation Hospital - University of Utah.

Individuals who sustain severe spinal cord injuries (SCI) undergo dramatic changes in their lives and
develop various impairments and disabilities — limited sensation in their hands, arms, elbows, and
upper body functions. These functional disabilities often necessitate the use of power-operated wheelchairs
(PWC). Additionally, irrespective of the injury level, individuals must follow several lifelong self-care
activities after acquiring the impairments. In most cases, these self-care activities are highly complex to perform, particularly for PWC users. Among them, Pressure Relief (PR) is the most frequent and one of the most crucial self-care activities to prevent pressure ulcers.

Pressure Ulcers (PUs) can form when a person spends much time sitting in a wheelchair and skin or soft tissues press against a harder surface – there are reduced blood flow on the back of the thighs, lower back, and the fold of the knees. Around 80% of individuals who have had an SCI have at least one PU during their lifetime. PUs are life-threatening and can cause infections, complications, and negative impacts on quality of life. To prevent PUs, individuals need to perform regular pressure relief (PR) to reduce the tissue load. Wheelchair users typically need to perform a PR every 20 minutes—that is three times an hour or 30-50 times a day. Manual wheelchair users perform PR by changing their sitting position—leaning forward, backward, or to the side. Power wheelchair users perform PR by using the tilt function of the power wheelchair. Although PR is relatively simple to perform, most people find it difficult to follow recommended guidelines. The primary reason is that the activity is, by nature, one that people easily forget. 

This project aims to design technology to better help these individuals to improve their PR adherence. 



Designing Technology for Complex Self-care: Considerations for People with Spinal Cord Injury

Tamanna Motahar, Jason Wiese

CHI '22 Workshop: Challenges, Tensions, and Opportunities in Designing Ecosystems to Support the Management of Complex Health Needs, 2022, 2022

AI-driven Personal Informatics for Individuals with Severe Spinal Cord Injury

Tamanna Motahar, Jason Wiese

CHI '22 Workshop: Grand Challenges for Personal Informatics and AI, 2022, 2022

Using Online Social Spaces for Information Seeking and Identity Construction for People with Spinal Cord Injuries

Tamanna Motahar, Marina Kogan, Jason Wiese

CSCW '22 Workshop: Information-Seeking, Finding Identity: Exploring the Role of Online Health Information in Illness Experience , 2022

Expanding Disability Justice in HCI : Considerations of Holistic “Lived Experience

Tamanna Motahar, Jason Wiese

CHI '2022 Workshop: Dreaming Disability Justice in HCI, 2022

A Review of Personal Informatics Research for People with Motor Disabilities

Tamanna Motahar, Jason Wiese

Proceedings of the ACM on Interactive, Mobile, Wearable and Ubiquitous Technologies (IMWUT), vol. 6(2), 2022, pp. 1-31

Identifying Factors That Inhibit Self-care Behavior among Individuals with Severe Spinal Cord Injury

Tamanna Motahar, Isha Ghosh, Jason Wiese

CHI '22: ACM CHI Conference on Human Factors in Computing Systems, Association for Computing Machinery, 2022 Apr 27, pp. 1-16

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