title: Narrating narcolepsy--centering a side effect.
abstract: The mass-vaccination with Pandemrix was the most important preventive measure in Sweden during the A(H1N1) influenza pandemic of 2009-2010, and covered 60% of the population. From 2010, an increased incidence of the neurological disease narcolepsy was reported, and an association with Pandemrix was affirmed for more than 200 children and young adults. The parental experience of this side effect provided a starting point for a collectively shaped critical narrative to be acted out in public, but also personalized narratives of continual learning about the disease and its consequences. This didactic functionality resulted in active meaning-making practices about how to handle the aftermath--using dark humor, cognitive tricks, and making themselves and their children's bodies both objects and subjects of knowledge. Using material from interviews with parents, this mixing of knowledge work and political work, and the potential for reflective consciousness, is discussed.
authors.affiliation: a Department of Culture and Media Studies , Umeå University , Umeå , Sweden.
authors.forename: Britta
authors.initials: B
authors.lastname: Lundgren
mesh_terms: D000293:Adolescent; D060432:Anthropology, Medical; D002385:Cataplexy; D002648:Child; D005260:Female; D006801:Humans; D053118:Influenza A Virus, H1N1 Subtype; D007252:Influenza Vaccines / Q000009:adverse effects*; D007251:Influenza, Human; D008297:Male; D032541:Mass Vaccination / Q000009:adverse effects*; D009290:Narcolepsy / Q000209:etiology*; D033262:Narration; D013548:Sweden
chemical_list: D007252:Influenza Vaccines; C556153:pandemrix
keywords: A(H1N1); mass-vaccination; narcolepsy; parents’ narratives; side effects