Understanding Informational Practices and Exploring Data Collection Approaches for Quality of Life in Brain Injury Illness Management

Abstract

Brain injury, a combination of medical injury, chronic illness, and impairment, affects more than 3.5 million people in the United States every year through an interplay of physiological, psychological, environmental, and cultural factors spanning clinical recovery, illness management, and personal recovery phases. The lack of collaborative and integrated understanding from healthcare and accessibility communities led to treating brain injury as a localized damage rather than individual response to ever-changing impairment and symptoms, focusing primarily on clinical recovery until recently. While self-tracking and management technologies have been widely successful in measuring individual symptoms, they have struggled to facilitate sensemaking and problem solving to achieve a consistent biopsychosocial awareness of illness. My dissertation addresses this gap through three aims: (1) investigate the current informational practices of individuals undergoing post-acute brain injury recovery, (2) explore technology-agnostic approaches for data collection and their impact on sensemaking processes and conceptual understanding of brain injury, and (3) develop guidelines for designing data collection tools that facilitate sensemaking in brain injury self-management. I achieve this through two longitudinal studies – an interview study that introduced participants to the framework on quality of life after traumatic brain injury (QoLIBRI) and a narrative study that used QoLIBRI framework to do structured journaling and co-design individualized data collection tools. The goal of this work is to improve self-awareness of individuals with brain injury enabling them to anticipate or recognize the occurrence of a challenge caused by impairment and then, utilize assistive technologies to bypass the limitation. It also has implications for involving neurodiverse populations in research and technology design.