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      An AIDS-Denialist Online Community on a Russian Social Networking Service: Patterns of Interactions With Newcomers and Rhetorical Strategies of Persuasion

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          Abstract

          Background

          The rise of social media proved to be a fertile ground for the expansion of the acquired immune deficiency syndrome (AIDS)-denialist movement (in the form of online communities). While there is substantial literature devoted to disproving AIDS-denialist views, there is a lack of studies exploring AIDS-denialists online communities that interact with an external environment.

          Objective

          We explored three research areas: (1) reasons for newcomers to come to an AIDS-denialist community, (2) the patterns of interactions of the community with the newcomers, and (3) rhetorical strategies that denialists use for persuasion in the veracity of their views.

          Methods

          We studied the largest AIDS-denialist community on one of the most popular social networking services in Russia. We used netnography as a method for collecting data for qualitative analysis and observed the community for 9 months (at least 2-3 times a week). While doing netnography, we periodically downloaded community discussions. In total, we downloaded 4821 posts and comments for analysis. Grounded theory approach was used for data analysis.

          Results

          Most users came to the community for the following reasons: their stories did not fit the unitary picture of AIDS disease progression translated by popular medical discourse, health problems, concern about HIV-positive tests, and desire to dissuade community members from false AIDS beliefs. On the basis of strength in AIDS-denialist beliefs, we constructed a typology of the newcomers consisting of three ideal-typical groups: (1) convinced: those who already had become denialists before coming to the group, (2) doubters: those who were undecided about the truth of either human immunodeficiency virus (HIV) science theory or AIDS-denialist theory, and (3) orthodox: those who openly held HIV science views. Reception of a newcomer mainly depended on the newcomer’s belief status. Reception was very warm for the convinced, cold or slightly hostile for the doubters, and extremely hostile or derisive for the orthodox. We identified seven main rhetorical strategies of persuasion used by the denialists on the “undecided”.

          Conclusions

          Contrary to the widespread public health depiction of AIDS denialists as totally irrational, our study suggests that some of those who become AIDS denialists have sufficiently reasonable grounds to suspect that “something is wrong” with scientific theory, because their personal experience contradicts the unitary picture of AIDS disease progression. Odd and inexplicable practices of some AIDS centers only fuel these people’s suspicions. We can conclude that public health practitioners’ practices may play a role in generating AIDS-denialist sentiments. In interactions with the newcomers, the experienced community members highlighted the importance of personal autonomy and freedom of choice in decision making consistent with the consumerist ideology of health care. The study findings suggest that health care workers should change a one-size-fits-all mode of counseling for a more complex and patient-tailored approach, allowing for diversity of disease progression scenarios and scientific uncertainty.

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          Most cited references43

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          Empirical studies assessing the quality of health information for consumers on the world wide web: a systematic review.

          The quality of consumer health information on the World Wide Web is an important issue for medicine, but to date no systematic and comprehensive synthesis of the methods and evidence has been performed. To establish a methodological framework on how quality on the Web is evaluated in practice, to determine the heterogeneity of the results and conclusions, and to compare the methodological rigor of these studies, to determine to what extent the conclusions depend on the methodology used, and to suggest future directions for research. We searched MEDLINE and PREMEDLINE (1966 through September 2001), Science Citation Index (1997 through September 2001), Social Sciences Citation Index (1997 through September 2001), Arts and Humanities Citation Index (1997 through September 2001), LISA (1969 through July 2001), CINAHL (1982 through July 2001), PsychINFO (1988 through September 2001), EMBASE (1988 through June 2001), and SIGLE (1980 through June 2001). We also conducted hand searches, general Internet searches, and a personal bibliographic database search. We included published and unpublished empirical studies in any language in which investigators searched the Web systematically for specific health information, evaluated the quality of Web sites or pages, and reported quantitative results. We screened 7830 citations and retrieved 170 potentially eligible full articles. A total of 79 distinct studies met the inclusion criteria, evaluating 5941 health Web sites and 1329 Web pages, and reporting 408 evaluation results for 86 different quality criteria. Two reviewers independently extracted study characteristics, medical domains, search strategies used, methods and criteria of quality assessment, results (percentage of sites or pages rated as inadequate pertaining to a quality criterion), and quality and rigor of study methods and reporting. Most frequently used quality criteria used include accuracy, completeness, readability, design, disclosures, and references provided. Fifty-five studies (70%) concluded that quality is a problem on the Web, 17 (22%) remained neutral, and 7 studies (9%) came to a positive conclusion. Positive studies scored significantly lower in search (P =.02) and evaluation (P =.04) methods. Due to differences in study methods and rigor, quality criteria, study population, and topic chosen, study results and conclusions on health-related Web sites vary widely. Operational definitions of quality criteria are needed.
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            Identifying influential and susceptible members of social networks.

            Identifying social influence in networks is critical to understanding how behaviors spread. We present a method that uses in vivo randomized experimentation to identify influence and susceptibility in networks while avoiding the biases inherent in traditional estimates of social contagion. Estimation in a representative sample of 1.3 million Facebook users showed that younger users are more susceptible to influence than older users, men are more influential than women, women influence men more than they influence other women, and married individuals are the least susceptible to influence in the decision to adopt the product offered. Analysis of influence and susceptibility together with network structure revealed that influential individuals are less susceptible to influence than noninfluential individuals and that they cluster in the network while susceptible individuals do not, which suggests that influential people with influential friends may be instrumental in the spread of this product in the network.
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              Empirical Studies Assessing the Quality of Health Information for Consumers on the World Wide Web

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                Author and article information

                Contributors
                Journal
                J Med Internet Res
                J. Med. Internet Res
                JMIR
                Journal of Medical Internet Research
                JMIR Publications Inc. (Toronto, Canada )
                1439-4456
                1438-8871
                November 2014
                17 November 2014
                : 16
                : 11
                : e261
                Affiliations
                [1] 1National Research University Higher School of Economics Laboratory for Internet Studies St. PetersburgRussian Federation
                Author notes
                Corresponding Author: Peter Meylakhs peter.meylakhs@ 123456gmail.com
                Author information
                http://orcid.org/0000-0002-3029-9918
                http://orcid.org/0000-0002-9966-7117
                http://orcid.org/0000-0002-2669-3154
                http://orcid.org/0000-0002-2932-2746
                Article
                v16i11e261
                10.2196/jmir.3338
                4260080
                25403351
                c6168fae-bbd6-4027-bcac-e9e376b18cb4
                ©Peter Meylakhs, Yuri Rykov, Olessia Koltsova, Sergey Koltsov. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 17.11.2014.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0/), 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.

                History
                : 19 February 2014
                : 17 July 2014
                : 30 September 2014
                : 12 October 2014
                Categories
                Original Paper
                Original Paper

                Medicine
                consumer health information,internet,online communities,aids denialists,quality of health information on the internet,netnography,qualitative research

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