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

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Description
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

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.
Date Created
2024
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"Just Labor Transistions": Workforce Policies in Times of Technological Change

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Description
The narratives on technological change and the emergence of the "fourth industrial revolution" (4IR) play a significant role in defining what has happened and is happening in the labor market. Those narratives, mainly based in developed countries, have served as

The narratives on technological change and the emergence of the "fourth industrial revolution" (4IR) play a significant role in defining what has happened and is happening in the labor market. Those narratives, mainly based in developed countries, have served as a turning point for policy development, especially regarding the design and implementation of educational and labor strategies as policy instruments to cope with the challenges of inequality and its labor-related causes. However, the specificities of past labor and educational policies play a crucial role in understanding the possible effects of large-scale transformations related to technological change. In this research, I develop a theoretical model connecting the experience of the third industrial revolution, the current assumptions for the future of work agenda, the forecast regarding the possible impacts of the fourth industrial revolutions, and the areas for policy intervention. I use the model to craft a case study, where I present evidence regarding the evolution of the Chilean labor market between 1990 and 2020, following the evolution of job polarization, occupational composition, workforce educational attainment, economic complexity, and the technological ecosystem. I compared those elements with the stylized facts and assumptions of the narratives of technological change. I argue that the differences in the process of workforce adaptation (timing and material conditions) can shed light on the assumptions of the “future of work” agendas, especially by tackling how different conditions could reach different results and craft substantively different base scenarios for policy design and implementation of human capital-based interventions as the ones suggested by international organizations and forums. In the concluding chapter, I summarize the findings and comment on how to address the design of just labor transitions.
Date Created
2023
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Advancing Methods to Monitor and Assess Personal Ultraviolet Radiation Exposure

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Description
Ultraviolet (UV) radiation is the most well-known cause of skin cancer, and skin cancer is the most common type of cancer in the United States. People are exposed to UV rays when they engage in outdoor activities, particularly exercise, which

Ultraviolet (UV) radiation is the most well-known cause of skin cancer, and skin cancer is the most common type of cancer in the United States. People are exposed to UV rays when they engage in outdoor activities, particularly exercise, which is an important health behavior. Thus, researchers and the general public have shown increasing interest in measuring UV exposures during outdoor physical activity using wearable sensors. However, minimal research exists at the intersection of UV sensors, personal exposure, adaptive behavior due to exposures, and risk of skin damage. Three studies are presented in this dissertation: (1) a state-of-the-art review that synthesizes the current academic and grey literature surrounding personal UV sensing technologies; (2) the first study to investigate the effects of specific physical activity types, skin type, and solar angle on personal exposure in different outdoor environmental contexts; and (3) a study that develops recommendations for future UV-sensing wearables based on follow-up interviews with participants from the second study, who used a wrist-worn UV sensor while exercising outdoors. The first study provides recommendations for 13 commercially available sensors that are most suitable for various types of research or personal use. The review findings will help guide researchers in future studies assessing UV exposure with wearables during physical activity. The second study outlines the development of predictive models for individual-level UV exposure, which are also provided. These models recommend the inclusion of sky view factor, solar angle, activity type, urban environment type, and the directions traveled during physical activity. Finally, based on user feedback, the third study recommends that future UV-sensing wearables should be multi-functional watches where users can toggle between showing their UV exposure results in cumulative and countdown formats, which is intuitive and aesthetically pleasing to users.
Date Created
2021
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Successful Failures and Failed Successes: Untangling the Obstacles Facing Collaborative Proposal Writing

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Description
The first task faced by many teams endeavoring to solve complex scientific problems is to seek funding for their research venture. Often, this necessitates forming new, geographically dispersed teams of researchers from multiple disciplines. While the team science and organizational

The first task faced by many teams endeavoring to solve complex scientific problems is to seek funding for their research venture. Often, this necessitates forming new, geographically dispersed teams of researchers from multiple disciplines. While the team science and organizational management fields have studied project teams extensively, nascent teams are underrepresented in the literature. Nonetheless, understanding proposal team dynamics is important because if left unaddressed, obstacles may persist beyond the funding decision and undermine the possibility of team successes adjunctive to funding. Participant observation of more than 100 multi-investigator proposal teams and semi-structured interviews with six leaders of multidisciplinary proposal teams identified investigator motivations for collaboration, obstacles to collaboration, and indicators of proposal team success. The motivations ranged from technical interests in the research question to a desire to have impact beyond oneself. The obstacles included inconsistent or non-existent communication protocols, unclear processes for producing and reviewing documents, ad hoc file and citation management systems, short and stressful time horizons, ambiguous decision-making procedures, and uncertainty in establishing a shared vision. While funding outcome was the most objective indicator of a proposal team’s success, other success indicators emerged, including whether the needs of the team member(s) had been met and the willingness of team members to continue collaborating. This multi-dimensional definition of success makes it possible for teams to simultaneously be considered successes and failures. As a framework to analyze and overcome obstacles, this work turned to the United States military’s command and control (C2) approach, which relies on specifying the following elements to increase an organization’s agility: patterns of interaction, distribution of information, and allocation of decision rights. To address disciplinary differences and varied motivations for collaboration, this work added a fourth element: shared meaning-making. The broader impact of this work is that by implementing a C2 framework to uncover and address obstacles, the proposal experience—from team creation, to idea generation, to document creation, to final submittal—becomes more rewarding for faculty, leading to greater job satisfaction. This in turn will change how university research enterprises create, organize, and share knowledge to solve complex problems in the post-industrial information age.
Date Created
2021
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