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Chronic Confusion: The Information Ecology & Chronic Illness Management of Syrian Refugees in Jordan

Bittle-Dockery, Darius (2022) Chronic Confusion: The Information Ecology & Chronic Illness Management of Syrian Refugees in Jordan. Doctoral Dissertation, University of Pittsburgh. (Unpublished)

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Abstract

Noncommunicable chronic diseases (NCDs) account for over 70% of deaths worldwide, with most deaths occurring in low-middle-income countries like Jordan. Although chronic care is a long-term endeavor, the protracted nature of the Syrian conflict has created one of the most challenging environments in which refugees must discern effective chronic illness management (CIM) strategies (e.g. identifying where to seek care, or whether to take medications). The outcomes of these strategies are entangled within the health information networks of the greater humanitarian system, as refugees are paradoxically tasked with developing CIM strategies despite also suffering from a dearth of adequate resources and information with which to inform these strategies. Frequent breakdowns within humanitarian information networks leave refugees with an inability to navigate the system, a lack of adequate health information, and creates the need— otherwise framed as "the responsibility"—to care for themselves. This research investigated the lived experiences and informational challenges facing Syrian refugees in Jordan as they attempted to source, store, and retrieve health information needed for their CIM. Between 2015 and 2020, refugees detailed jarring testimonies describing the detrimental results of when these attempts fail. This dissertation describes examples of these challenges and some of the sociotechnical solutions refugees have developed by using their social information networks to address their illness and information management needs. This dissertation also outlines an approach to chronic illness management called the eco-infrastructural approach which will hopefully assist aid organizations in development of more enduring information infrastructure that can be built on top of these successful sociotechnical practices. By building infrastructures on top of already successful solutions to information challenges, organizations and practitioners can help refugees find clarity within the confusing informational ecology of the humanitarian healthcare system.


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Details

Item Type: University of Pittsburgh ETD
Status: Unpublished
Creators/Authors:
CreatorsEmailPitt UsernameORCID
Bittle-Dockery, Dariusdsb45@pitt.edudsb450000-0001-7976-7965
ETD Committee:
TitleMemberEmail AddressPitt UsernameORCID
Committee CoChairMusante, Kathleenkathleen.musante@pitt.edu
Committee CoChairMatza, Tomastomas.matza@pitt.edu
Committee MemberCabot, Heathhcabot@pitt.edu
Committee MemberMair, Christinacmair@pitt.edu
Date: 13 August 2022
Date Type: Publication
Defense Date: 27 April 2022
Approval Date: 4 December 2024
Submission Date: 5 August 2022
Access Restriction: No restriction; Release the ETD for access worldwide immediately.
Number of Pages: 234
Institution: University of Pittsburgh
Schools and Programs: Dietrich School of Arts and Sciences > Anthropology
Degree: PhD - Doctor of Philosophy
Thesis Type: Doctoral Dissertation
Refereed: Yes
Uncontrolled Keywords: data, privacy, trust, socioecology
Date Deposited: 04 Dec 2024 16:58
Last Modified: 04 Dec 2024 18:09
URI: http://d-scholarship.pitt.edu/id/eprint/43538

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