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Dissertation Information for Maria Souden

- Maria Souden

- Ph.D.

- Library and Information Science

- University of Michigan, Ann Arbor (USA) (2011)

- Joan C. Durrance

- Caroline R. Richardson
- Tiffany Christine Elizabeth Veinot
- Soo Young Rich

MPACT Status: Fully Complete

Title: Narrowing the Gap: Chronic Illness Information as Experienced in Everyday Life and Healthcare Contexts

Abstract: This research examines the information experience of people with chronic health conditions in everyday life and as shaped by the healthcare context in order to understand informational aspects of patient-provider disconnects. The study is unique in that it pulls together the perspectives of two distinct contexts, articulating how information use both reflects and plays a role in the disconnects between them. Its patient-centered orientation offers an additional perspective to current consumer health informatics research, which has taken a system-centered perspective, focusing on information and its transmission rather than on how it is experienced by people using it.

Two qualitative studies were conducted which included 14 in-depth interviews with women experiencing a variety of chronic health conditions; observations of 150+ patient encounters in three VA primary care clinics; and interviews with 49 healthcare providers treating patients with diabetes and other chronic conditions. The first study's key finding is that information was used by people with chronic illness in order to manage its impact on their everyday lives, serving emotional as well as cognitive purposes and meeting a host of medical and non-medical needs that were not always sufficiently addressed by providers. The second study found that while allowing chronic illness care coordination over time and among provider teams, the ubiquitous use of the electronic health record (EHR) in the VA setting also abstracted patient experience, acting as a representation of the patient in provider interactions. The structure and form of the EHR reified and privileged certain types of information, i.e., numeric, quantifiable data, while obscuring more freeform information related to the patient's daily experience, lowering its priority and making it difficult to track and retrieve from the record.

Considered together, the findings of the two studies indicate that the use of objective information in healthcare environments may stand in stark contrast to the subjective ways illness is experienced in everyday life, presenting opportunities for both disconnect and synergy. The study's findings have implications for recasting the role of information in individual health literacy, provider-patient communication, and provider information use related to chronic illness care.

MPACT Scores for Maria Souden

A = 0
C = 0
A+C = 0
T = 0
G = 0
W = 0
TD = 0
TA = 0
calculated 2012-07-30 16:18:37

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Students under Maria Souden

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