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      “Not all my friends need to know”: a qualitative study of teenage patients, privacy, and social media

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          Abstract

          Background

          The literature describes teenagers as active users of social media, who seem to care about privacy, but who also reveal a considerable amount of personal information. There have been no studies of how they manage personal health information on social media.

          Objective

          To understand how chronically ill teenage patients manage their privacy on social media sites.

          Design

          A qualitative study based on a content analysis of semistructured interviews with 20 hospital patients (12–18 years).

          Results

          Most teenage patients do not disclose their personal health information on social media, even though the study found a pervasive use of Facebook. Facebook is a place to be a “regular”, rather than a sick teenager. It is a place where teenage patients stay up-to-date about their social life—it is not seen as a place to discuss their diagnosis and treatment. The majority of teenage patients don't use social media to come into contact with others with similar conditions and they don't use the internet to find health information about their diagnosis.

          Conclusions

          Social media play an important role in the social life of teenage patients. They enable young patients to be “regular” teenagers. Teenage patients' online privacy behavior is an expression of their need for self-definition and self-protection.

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          Most cited references 32

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          Whatever happened to qualitative description?

          The general view of descriptive research as a lower level form of inquiry has influenced some researchers conducting qualitative research to claim methods they are really not using and not to claim the method they are using: namely, qualitative description. Qualitative descriptive studies have as their goal a comprehensive summary of events in the everyday terms of those events. Researchers conducting qualitative descriptive studies stay close to their data and to the surface of words and events. Qualitative descriptive designs typically are an eclectic but reasonable combination of sampling, and data collection, analysis, and re-presentation techniques. Qualitative descriptive study is the method of choice when straight descriptions of phenomena are desired. Copyright 2000 John Wiley & Sons,
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            Sample size in qualitative research.

            A common misconception about sampling in qualitative research is that numbers are unimportant in ensuring the adequacy of a sampling strategy. Yet, simple sizes may be too small to support claims of having achieved either informational redundancy or theoretical saturation, or too large to permit the deep, case-oriented analysis that is the raison-d'être of qualitative inquiry. Determining adequate sample size in qualitative research is ultimately a matter of judgment and experience in evaluating the quality of the information collected against the uses to which it will be put, the particular research method and purposeful sampling strategy employed, and the research product intended.
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              What's in a name? Qualitative description revisited.

              "Whatever Happened to Qualitative Description?" (Sandelowski, 2000) was written to critique the prevailing tendency in qualitative health research to claim the use of methods that were not actually used and to clarify a methodological approach rarely identified as a distinctive method. The article has generated several misconceptions, most notably that qualitative description requires no interpretation of data. At the root of these misconceptions is the persistent challenge of defining qualitative research methods. Qualitative description is a "distributed residual category" (Bowker & Star, 2000). Cambridge, MA: The MIT Press) in the classification of these methods. Its value lies not only in the knowledge its use can produce, but also as a vehicle for presenting and treating research methods as living entities that resist simple classification.
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                Author and article information

                Journal
                J Am Med Inform Assoc
                J Am Med Inform Assoc
                jamia
                amiajnl
                Journal of the American Medical Informatics Association : JAMIA
                BMJ Group (BMA House, Tavistock Square, London, WC1H 9JR )
                1067-5027
                1527-974X
                Jan-Feb 2013
                1 January 2013
                : 20
                : 1
                : 16-24
                Affiliations
                [1 ]Department of Informatics, University of Oslo, Oslo, Norway
                [2 ]Children's Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada
                [3 ]Department of Pediatrics, University of Ottawa, Ottawa, Ontario, Canada
                Author notes
                [Correspondence to ] Dr Maja van der Velden, Department of Informatics, University of Oslo, PO Box 1080 Blindern, Oslo 0316, Norway; majava@ 123456ifi.uio.no
                Article
                amiajnl-2012-000949
                10.1136/amiajnl-2012-000949
                3555319
                22771531
                Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions

                This is an open-access article distributed under the terms of the Creative Commons Attribution Non-commercial License, which permits use, distribution, and reproduction in any medium, provided the original work is properly cited, the use is non commercial and is otherwise in compliance with the license. See: http://creativecommons.org/licenses/by-nc/3.0/ and http://creativecommons.org/licenses/by-nc/3.0/legalcode

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                1506
                Focus on Patient Privacy
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