Under sommaren 2010 rapporterades till Läkemedelsverket en oväntad höjning av fall av narkolepsi.Senare har visats att vaccinet Pandemrix som användes under massvaccinationen under svininfluensapandemin medförde denna biverkning.
Syftet med projektet är att undersöka kulturella och sociala mönster hos grupper som på olika sätt varit inblandade i förloppet kring svininfluensapandemin. Grupperna består av a) patienter som drabbats av svininfluensa, narkolepsi eller annan neurologisk biverkning; b) myndighetspersoner och beslutsfattare, samt c) personal inom hälsovården. Med hjälp av metodologiska och teoretiska redskap inom kulturanalys och narrativ forskning (forskning om berättande) belyses hur människor i dessa olika kategorier i sitt berättande definierar fenomen som rör hälsa, sjukdom, smitta, smittobärare och vaccination.
Medverkande institutioner och enheter vid Umeå universitet
In Sweden an unexpectedly large number of reports of narcolepsy in children and adolescents after vaccination with Pandemrix (for preventing “Swine-flu, A(H1N1)), were received by the Medical Products Agency (Läkemedelsverket) from the summer of 2010. The number of cases of narcolepsy among vaccinated persons have since then risen with a rapid decline during the post pandemic period. The serious medical side effect was unexpected and has gained significant importance for opinions regarding epidemics and vaccines. It is easy to trace a decreased trust in medical, social, and political authorities. This is particularly evident in public debates in media and in different web logs, websites and Facebook-groups. Vaccine is the most effective means of controlling influenza. Nevertheless, willingness to be immunized changes over time and there is insufficient knowledge about these changes, their causes and their effects. To meet society´s need to deal with current and upcoming epidemics and pandemics, interdisciplinary research is required. For all countries in the world it is of equal interest to include social and cultural perspectives in the studies. Governments and authorities with the responsibility to protect people face double-edged fears. One is the fear of having done too little and afterwards be accused of having disregarded the threat and thereby causing unnecessary damage. The other fear is overreaction, “crying wolf” and being accused of wasting money and trust. Behind these fears there is also an underlying worry to lose control and be outflanked and powerless facing epidemics. Another emerging fear is that unwanted side-effects will follow medical measures. Several medical products-scandals and scares have also created suspicion and beliefs that politicians and researchers walk hand in hand with profit-gaining pharmaceutical companies. The core of the project is to investigate different cultural and social framings concerning the A(H1N1)epidemics. With the help from theory and method within cultural analysis and dialogical narrative analysis narratives and stories are used for understanding the interpretations that guide people in their decisions regarding vaccination. Furthermore, the project explores how these interpretations constitute potentials or limitations for communicable disease prevention in society. The aim is to enhance knowledge about the implications of culture for different categories, thereby creating a solid foundation with usable tools in participatory preparatory work preceding decision-making and implementation of preventive measures. Different kinds of ethnographic fieldwork constitute the methodological foundation, interviews, participatory observation, field observations, visual representations, archives, newspapers, protocols etc. The ethnographic fieldwork takes place within three groups of actors: a) patients and vaccinees, b) policymakers and decision-makers, and c) different categories of health staff. The ethnographic field work will be supplemented by a Q-methodology study on questions and statements derived from media and web-logs. The Swedish experiences from mass-vaccination and the following side effects of course draw international attention. Sweden had the most far-reaching and widespread mass-vaccination in the world during the flu-pandemic 2009. The issue of side effects is tremendously important and different mapping investigations are carried out all over the world. Sweden can be at the forefront here, bearing on the successful vaccine uptake and a pronounced will from authorities to understand and reflect on the underlying causes for people´s decisions to say yes or no to the vaccine. For the future, for emerging infections and for successful prevention, this knowledge is crucial.