The Invisible Labor in Managing Chronic Illness: Exploring Patient Work through Qualitative Methods and Patient Narratives

This dissertation focuses on “patient work” within the context of chronic illness, with a primary focus on information work related to chronic illness and patients’ establishment of legitimacy and credibility concerning their bodily information. Patient work is the labor and tasks of managing one’s health or the health of another (such as a dependent child) and is a universal and ongoing responsibility for billions of people around the globe. Chronic illness intensifies patient work. This research employs an interdisciplinary approach, spanning health services research, science and technology studies, informatics, and human-computer interaction. Using empirical investigations on patients managing chronic kidney disease and seeking an endometriosis diagnosis, this dissertation explores information work dimensions and the quest for credibility, legitimacy, and authoritative knowledge among patients. The interdisciplinary approach deepens understanding of patient work intricacies and challenges faced by those with chronic illness. This dissertation investigates information work dimensions, emphasizing the quest for, receiving, and passing of information; including tracking, disclosing, and synthesizing health information, spotlighting physical experiences often overlooked in scholarly research. Highlighting the overlooked form of information work involving bodily experiences, the research explores how patients navigate disease management using data from their bodies. This emphasizes legitimacy and credibility built through patients' bodily experiences, deeming them experts in disease management. Examining credibility in bodily information work, especially during the diagnostic quest, this dissertation addresses challenges faced by patients in establishing credibility within professional communities. The choice of chronic illness as a case study is justified by patients' instrumental role in managing treatment and care, often overlooked by empowerment efforts. This research argues that without recognizing patient work, poorly designed systems burden patients, leading to worse health outcomes. This interdisciplinary dissertation provides a deeper understanding patient work by developing a typology of patient work, highlighting new distinct types of patient work such as the information work of bodily experiences, and validates credibility work. This work aims to bridge research gaps between disciplines, shifting healthcare systems to support unaccounted-for patient labor better. Furthermore, this research empowers patients as credible experts in their care through qualitative methods and patient narratives.