Listening to bodies and watching machines: Developing health information skills, tools and services for people living with chronic kidney disease

Godbold, Natalya

doi:10.1080/00048623.2013.773859

Cited by 16 publications

(14 citation statements)

References 36 publications

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“…To investigate patients’ use of terminology, we chose online patient forums where patients communicate online with other patients about a particular health condition. In such forums, a patient commences a thread by posting a comment, question or story, to which other members then reply …”

Section: Methodsmentioning

confidence: 99%

“…In such forums, a patient commences a thread by posting a comment, question or story, to which other members then reply. 48 We chose a thyroid forum for our study for a number of reasons. First, health resources on the Internet are especially relevant for patients with chronic diseases for whom relevant information on self-management and coping strategies are particularly valuable.…”

Section: Datamentioning

confidence: 99%

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Medical terminology in online patient–patient communication: evidence of high health literacy?

Fage-Butler

Jensen

2015

Health Expectations

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BackgroundHealth communication research and guidelines often recommend that medical terminology be avoided when communicating with patients due to their limited understanding of medical terms. However, growing numbers of e‐patients use the Internet to equip themselves with specialized biomedical knowledge that is couched in medical terms, which they then share on participatory media, such as online patient forums.ObjectiveGiven possible discrepancies between preconceptions about the kind of language that patients can understand and the terms they may actually know and use, the purpose of this paper was to investigate medical terminology used by patients in online patient forums.DesignUsing data from online patient–patient communication where patients communicate with each other without expert moderation or intervention, we coded two data samples from two online patient forums dedicated to thyroid issues.ResultsPrevious definitions of medical terms (dichotomized into technical and semi‐technical) proved too rudimentary to encapsulate the types of medical terms the patients used. Therefore, using an inductive approach, we developed an analytical framework consisting of five categories of medical terms: dictionary‐defined medical terms, co‐text‐defined medical terms, medical initialisms, medication brand names and colloquial technical terms. The patients in our data set used many medical terms from all of these categories.Discussion and conclusionsOur findings suggest the value of a situated, condition‐specific approach to health literacy that recognizes the vertical kind of knowledge that patients with chronic diseases may have. We make cautious recommendations for clinical practice, arguing for an adaptive approach to medical terminology use with patients.

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Section: Methodsmentioning

confidence: 99%

Section: Datamentioning

confidence: 99%

Medical terminology in online patient–patient communication: evidence of high health literacy?

Fage-Butler

Jensen

2015

Health Expectations

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“…In line with a physical perspective on information, information scientists have increasingly focused on human senses as a source of information (Cox, ). In a hemodialysis context, Godbold () and Bonner and Lloyd () documented the importance of bodily states and medical devices as information sources for both patients and nurses. Following this, we focus on OSB due to their centrality in the sociomaterial context of healthcare (Rajkomar, Mayer, & Blandford, ; Ulrich et al, ).…”

Section: Literature Reviewmentioning

confidence: 99%

“…“Materiality,” refers to “…the ways in which physical and/or digital materials are arranged into particular forms that endure across differences in place and time” (Leonardi, , p.31). Materiality is important: objects, spatial arrangements, and physical experiences can be informative (Buckland, ; Cox, ; Godbold, ; McCreadie & Rice, ; Olsson & Lloyd, ; Wolf & Veinot, ). The term “sociomateriality” further clarifies that “materiality is intrinsic to everyday activities and relations” (Orlikowski & Scott, , p.455) and “takes on meaning when it is enmeshed with … social” phenomena (Leonardi, , p.38).…”

Section: Introductionmentioning

confidence: 99%

Materiality in information environments: Objects, spaces, and bodies in three outpatient hemodialysis facilities

Veinot

Pierce

2019

Asso for Info Science & Tech

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The materiality of information environments, and its role in information behavior, has received little attention. We present an ethnographic study involving 156 hours of observation and 28 patient interviews in outpatient hemodialysis facilities. Using an extended "Semiotic Framework for Information Systems Research," the findings show that objects, spaces, and bodies were integral to 6 sociomaterial layers of facility information environments: the physical, empiric, syntactic, semantic, pragmatic, and social world. Objects of importance in the information environments included dialysis machines, instruments, records, paper documents, televisions, furniture, thermostats, lighting, and personal possessions. Spatial features, including compartmentalization, displays, distance, proximity, and spatially-grounded routines, also constituted information environments. The information environments were also shaped by patient immobility, bodily discomforts, and orientation to bodily states. Each sociomaterial layer introduced enablers and constraints to information access, flow, and acceptance; these combined to construct patients primarily as passive recipients of information rather than active seekers and producers of information. A sociomaterial perspective and related focus on objects, spaces, and bodies offers a lens for professional information practice. We contribute information environment design guidance to facilitate such practice and stress that the value of certain sources and types of information can be materially encoded in an environment.

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“…A key feature of this alternative approach to information research has been the emergence of a small but growing cohort of information researchers whose work explicitly examines the inherent relationship/connection between embodiment and information in a wide variety of communities and contexts (e.g. Godbold, 2013;Keilty 2016;Lloyd, 2007;Lueg, 2014;Olsson, 2010a;2010b;Prigoda and McKenzie, 2007;Veinot, 2007, Cox, Griffin, & Hartel, 2018. This work challenged longheld assumptions in information science research.…”

Section: Embodied Information Practicesmentioning

confidence: 99%

Embodied engagements with online pornography

Keilty

2015

The Information Society

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Information Science researchers have been relatively slow to consider the role of the body in understanding the relationship between people, information and technology. This panel will discuss how a consideration of the body can enrich information researchers' understanding of the complex relationship between people, information and technologies, old and new. Each panel member will briefly describe their own theoretical and methodological approach and how they have informed their understanding. This will be followed by a moderated discussion between the panel and audience members.

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Listening to bodies and watching machines: Developing health information skills, tools and services for people living with chronic kidney disease

Cited by 16 publications

References 36 publications

Medical terminology in online patient–patient communication: evidence of high health literacy?

Medical terminology in online patient–patient communication: evidence of high health literacy?

Materiality in information environments: Objects, spaces, and bodies in three outpatient hemodialysis facilities

Embodied engagements with online pornography

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