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      Media Consumption and Creation in Attitudes Toward and Knowledge of Inflammatory Bowel Disease: Web-Based Survey


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          Inflammatory bowel disease (IBD) is a chronic gastrointestinal condition affecting over 5 million people globally and 1.6 million in the United States but currently lacks a precisely determined cause or cure. The range of symptoms IBD patients experience are often debilitating, and the societal stigmas associated with some such symptoms can further degrade their quality of life. Better understanding the nature of this public reproach then is a critical component for improving awareness campaigns and, ultimately, the experiences of IBD patients.


          The objective of this study was to explore and assess the public’s awareness and knowledge of IBD, as well as what relationship, if any, exists between the social stigma surrounding IBD, knowledge of the disease, and various media usage, including social media.


          Utilizing a Web-based opt-in platform, we surveyed a nationally representative sample (n=1200) with demographics mirroring those of the US Census figures across baseline parameters. Using constructed indices based on factor analysis, we were able to build reliable measures of personal characteristics, media behaviors, and perceptions and knowledge of IBD.


          Among the American public, IBD is the most stigmatized of seven diseases, including genital herpes and human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS). Additionally, IBD knowledge is generally low with 11.08% (133/1200) of the sample indicating no familiarity with the disease and 85.50% (1026/1200) of participants inaccurately answering two-thirds of the IBD index questions with which their knowledge was assessed. Increased knowledge of IBD is associated with lower levels of stigma. However, social media use is currently related to lower levels of IBD knowledge ( P<.05). Furthermore, findings indicate that participants who most frequently engaged in producing social media content are less knowledgeable about IBD ( P<.10), highlighting the potential for a dangerous cycle should they be contributing to a Web-based IBD dialogue.


          Greater efforts must be taken to stymie IBD misinformation across all media, but especially in social media channels, to increase IBD knowledge and reduce stigma surrounding IBD. These findings pave the way for further research qualitatively examining the pervasiveness of specific IBD messages found in today’s social media landscape and their impact on enacted stigmas so as to better equip providers and patient advocacy organizations with impactful communication solutions.

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          Most cited references35

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              The role of the affect and availability heuristics in risk communication.

              Results of past research suggest that affect plays an important role in risk perception. Because affect may also increase the availability of risks, affect and availability are closely related concepts. Three studies tested the hypothesis that evoking negative affect (fear), either through past experience or through experimental manipulation, results in greater perceived risk. The present research focused on perception of flooding risk. Study 1 and Study 2 showed that participants who received risk information concerning a longer time period (e.g., 30 years) perceived more danger compared with participants who received risk information for one year. Study 2 showed that the interpretation of risk information was influenced by participants' own experiences with flooding. In Study 3, affect was experimentally manipulated. After looking at photographs depicting houses in a flooded region, participants perceived greater risk compared with participants in a control group. Taken together, the results of these three studies suggest that affect is important for successful risk communication. Results of the present research are in line with the affect heuristic proposed by Slovic and colleagues.

                Author and article information

                J Med Internet Res
                J. Med. Internet Res
                Journal of Medical Internet Research
                JMIR Publications (Toronto, Canada )
                December 2017
                08 December 2017
                : 19
                : 12
                [1] 1 Department of Emerging Media Studies College of Communication Boston University Boston, MA United States
                [2] 2 Section of Gastroenterology Boston Medical Center Boston University Boston, MA United States
                Author notes
                Corresponding Author: Jacob Groshek jgroshek@ 123456bu.edu
                ©Jacob Groshek, Miles Basil, Ling Guo, Sarah Parker Ward, Francis A Farraye, Jason Reich. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 08.12.2017.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.

                Original Paper
                Original Paper

                inflammatory bowel disease,social media,health communication,social stigma
                inflammatory bowel disease, social media, health communication, social stigma


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