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
Agent

Aligning Public Participation to Stakeholders’ Sustainability Literacy: A Case Study on Sustainable Urban Development in Phoenix, Arizona

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Description

n public planning processes for sustainable urban development, planners and experts often face the challenge of engaging a public that is not familiar with sustainability principles or does not subscribe to sustainability values. Although there are calls to build the

n public planning processes for sustainable urban development, planners and experts often face the challenge of engaging a public that is not familiar with sustainability principles or does not subscribe to sustainability values. Although there are calls to build the public’s sustainability literacy through social learning, such efforts require sufficient time and other resources that are not always available. Alternatively, public participation processes may be realigned with the sustainability literacy the participants possess, and their capacity can modestly be built during the engagement. Asking what tools might successfully align public participation with participants’ sustainability literacy, this article describes and evaluates a public participation process in Phoenix, Arizona, in which researchers, in collaboration with city planners, facilitated sustainability conversations as part of an urban development process. The tool employed for Visually Enhanced Sustainability Conversation (VESC) was specifically designed to better align public participation with stakeholders’ sustainability literacy. We tested and evaluated VESC through interviews with participants, city planners, and members of the research team, as well as an analysis of project reports. We found that the use of VESC successfully facilitated discussions on pertinent sustainability issues and embedded sustainability objectives into the project reports. We close with recommendations for strengthening tools like VESC for future public engagements.

Date Created
2015-07-03
Agent

Populating and facilitating urban sustainability transition arenas

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Description
Urban areas face a host of sustainability problems ranging from air and water quality, to housing affordability, and sprawl reducing returns on infrastructure investments, among many others. To address such challenges, cities have begun to envision generational sustainability transitions, and

Urban areas face a host of sustainability problems ranging from air and water quality, to housing affordability, and sprawl reducing returns on infrastructure investments, among many others. To address such challenges, cities have begun to envision generational sustainability transitions, and coalesce transition arenas in context to manage those transitions. Transition arenas coordinate the efforts of diverse stakeholders in a setting conducive to making evidence-based decisions that guide a transition forward. Though espoused and studied in the literature, transition arenas still require further research on the specifics of agent selection, arena setting, and decision-making facilitation. This dissertation has three related contributions related to transition arenas. First, it describes a process that took place within Phoenix that focused on identifying, recruiting, and building the capacity of potential transition agents for a transition arena. As part of this, a first draft suggestion of plausible steps to take for identifying, recruiting, and building a team of transition agents is proposed followed by a brief discussion on how this step-by-step process could be evaluated in subsequent work. Second, building on such engagement, this dissertation then offers criteria for transition agent selection based on a review of the literature that includes the setting in which a transition arena occurs, and strategies to support successful facilitation of decision-making in that setting. Third, those criteria are operationalized to evaluate the facilitation of a specific decision (draft of a new transportation plan) in a specific transition arena: the Citizens Committee for the future of Phoenix Transportation. The goal of this dissertation is to articulate a first-draft framework for guiding the development and scientific evaluation of transition arenas. Future work is required to empirically validate the framework in other real-world transition arenas. A feasible research agenda is provides to support this work.
Date Created
2015
Agent