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- Blomberg, Karin, 1970-, et al.
(författare)
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Using a Facebook Forum to Cope With Narcolepsy After Pandemrix Vaccination : Infodemiology Study
- 2019
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 21:4
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Tidskriftsartikel (refereegranskat)abstract
- Background: In 2010, newly diagnosed narcolepsy cases among children and adolescents were seen in several European countries as a consequence of comprehensive national vaccination campaigns with Pandemrix against H1N1 influenza. Since then, a large number of people have had to live with narcolepsy and its consequences in daily life, such as effects on school life, social relationships, and activities. Initially, the adverse effects were not well understood and there was uncertainty about whether there would be any financial compensation. The situation remained unresolved until 2016, and during these years affected people sought various ways to join forces to handle the many issues involved, including setting up a social media forum.Objective: Our aim was to examine how information was shared, and how opinions and beliefs about narcolepsy as a consequence of Pandemrix vaccination were formed through discussions on social media.Methods: We used quantitative and qualitative methods to investigate a series of messages posted in a social media forum for people affected by narcolepsy after vaccination.Results: Group activity was high throughout the years 2010 to 2016, with peaks corresponding to major narcolepsy-related events, such as the appearance of the first cases in 2010, the first payment of compensation in 2011, and passage of a law on compensation in July 2016. Unusually, most (462/774, 59.7%) of the group took part in discussions and only 312 of 774 (40.3%) were lurkers (compared with the usual 90% rule of thumb for participation in an online community). The conversation in the group was largely factual and had a civil tone, even though there was a long struggle for the link between the vaccine and narcolepsy to be acknowledged and regarding the compensation issue. Radical, nonscientific views, such as those expounded by the antivaccination movement, did not shape the discussions in the group but were being actively expressed elsewhere on the internet. At the outset of the pandemic, there were 18 active Swedish discussion groups on the topic, but most dissolved quickly and only one Facebook group remained active throughout the period.Conclusions: The group studied is a good example of social media use for self-help through a difficult situation among people affected by illness and disease. This shows that social media do not by themselves induce trench warfare but, given a good group composition, can provide a necessary forum for managing an emergency situation where health care and government have failed or are mistrusted, and patients have to organize themselves so as to cope.
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- Gerdin, Marcus, 1995-, et al.
(författare)
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What Goes Around Comes Around : Effects of Unclear Questionnaire Items in Information Security Research
- 2023
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Ingår i: Human Aspects of Information Security and Assurance. - : Springer. - 9783031385292 - 9783031385322 - 9783031385308 ; , s. 470-481
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Konferensbidrag (refereegranskat)abstract
- The credibility of research on information system security is challenged by inconsistent results and there is an ongoing discussion about research methodology and its effect on results within the employee non-/compliance to information security policies literature. We add to this discussion by investigating discrepancies between what we cl/aim to measure (theoretical properties of variables) and what we actually measure (respondents’ interpretations of our operationalized variables). The study asks: (1) How well do respondents’ interpretations of variables correspond to their theoretical definitions? (2) What are the characteristics and causes of any discrepancies between variable definitions and respondent interpretations? We report a pilot study including interviews with seven respondents to understand their interpretations of the variable Perceived severity from the Protection Motivation Theory (PMT).We found that respondents’ interpretations differ substantially from the theoretical definitions which introduces error in measurement. There were not only individual differences in interpretations but also, and more importantly, systematic ones; When questions are not well specified, or do not cover respondents’ practice, respondents make interpretations based on their practice. Our results indicate three types of ambiguities, namely (i) Vagueness in part/s of the measurement item causing inconsistencies in interpretation between respondents, (ii) Envision/Interpret ‘new’ properties not related to the theory, (iii) ‘Misses the mark’ measurements whereby respondents misinterpret the fundamentals of the item. The qualitative method used proved conducive to understanding respondents’ thinking, which is a key to improving research instruments.
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