Umeå University's logo

The past two decades have seen an increasing emphasis on large and interdisciplinary research configurations such as research networks, and centers of excellence including those in Social Sciences and Humanities research. Little research has been undertaken, however, to understand how these new large research structures that are being called forth by research funders and research/higher education institutions alike function socially, and what the impact of operating within such structures is on those working within, and those working with, them. Past writers have discussed the –intra-agentic— operations of human researchers and the material laboratory environment in its broadest sense. This volume is concerned with the social politics of research collaboration in relation to six key positions: leaders of large research formations, leaders of sub-projects within large collaborations, participant researchers, junior and early career researchers, advisory board members, and those who look in from the outside such as researchers who are un-funded. it explores the mostly unacknowledged but critical aspect of social structures in research, discussing issues such as struggles over leadership styles, the marginalization of researchers working cross-disciplinarily, power hierarchies and intellectual ownership, and the silencing of dissent in research.

Framing has previously been studied in the field of pandemic preparedness and global health governance and influenza pandemics have usually been framed in terms of security and evidence-based medicine on a global scale. This paper is based on the pandemic preparedness plans, published after 2009, from eight European countries. We study how pandemic preparedness is framed and how pandemic influenza in general is narrated in the plans. All plans contain references to ‘uncertainty’, ‘pandemic phases’, ‘risk management’, ‘vulnerability’ and ‘surveillance’. These themes were all framed differently in the studied plans. The preparedness plans in the member states diverge in ways that will challenge the ambition of the European Union to make the pandemic preparedness plans interoperable and to co-ordinate the member states during future pandemics.

The article discusses the challenges of working with hybrid teams within the overarching programme ChallengingGender, with its interdisciplinary theme groups and its arena for joint reflection and theoretical development. Theintellectual exchange over concepts with heterogeneous meanings across hybrid themes may lead to manydebates and controversies over allegedly joint concepts and be experienced as time-consuming exercises that givemeagre results. The article analyses the interaction within hybrid themes and between themes on the arena. Theanticipated dynamics in the process of arena work required both flexibility and adaptability, and the work wasdeveloped in several stages. Two important steps were the outlining of core statements and core questions at theheart of each theme, and letting themes actively challenge the research questions of other themes. The articlestresses the importance of exposure to methodological and theoretical pluralism to create scientific developmentand intellectual excitement.

Interviewing as a technique is governed by a series of conventions, depending on the kind of interview one conducts. One distinction that may be made is between asking a single, setting-the-ball-rolling type of question as is often the case in narrative, life history, or biographical interviews where a question such as 'Tell me about...' is asked, and interviews or interview schedules where the researcher has prepared a series of questions covering particular research themes. The latter is often done with the research topic itself directly addressed or in focus. However, one's research focus is usually hedged with all manner of assumptions, produced by the context in which one lives and researches. This chapter takes two such research areas – friendship and mourning – to discuss how one might move beyond the reproduction of those assumptions in how one conducts one's interviews. It draws on interview experiences from two previous research projects, one about the culture of friendship resulting in a book Den ofullkomliga vänskapen (The Imperfect Friendship) from 1995 and one about grief after a sudden death, published as Oväntad död: förväntad sorg (Unexpected Death: Expected Mourning) in 2006. Friendship and grief are gendered concepts permeated with culturally produced normative assumptions, loaded with emotions, ideals and anticipations. In interviewing people about their experiences regarding friendship, and mourning in the context of sudden death, I decided that it was important not to focus explicitly on 'the star', i.e. the topic directly, through asking questions such as 'what is a real friend', 'how many friends do you have', or 'how did you deal with the different phases of mourning' - questions that produce potentially conventional answers. Instead, I developed a different, more constructive interview method by trying to 'catch the light' by asking questions in more indirect ways. As I shall demonstrate in this chapter, getting at people's everyday practices proved to be a more effective way of eliciting narratives about the complex scenarios in which friendship or grief are performed.

During the H1N1 influenza pandemic 2009–2010 in Sweden, a mass-vaccination intervention was enacted as a precautionary measure. Half a year later, medical authorities reported an increased incidence of the life-long neurological disease narcolepsy, later firmly established as a side effect of the pandemic vaccine. Using interview material together with archived protocols, this article presents an analysis of two communities, the National Pandemic Group and the Narcolepsy Association. The aim is to discuss their respective ways of arguing for solidarity, herd immunity, social justice and claim for culpability of the state. Both communities face dilemmas, doubts and double-bind situations, but also perform politics and ethics for the future in mobilizing notions of solidarity and responsibility in their different narratives.

Impact, pay-offs, value-creating – in what ways can ethnological research influence pandemic preparedness and management?

During the A(H1N1) pandemic 2009-2010, all Swedish citizens were recommended vaccination with the influenza vaccine Pandemrix. However, a very serious and unexpected side effect emerged: more than 300 children and young adults were diagnosed with narcolepsy after vaccination. Besides the tragic outcome for these children and their families, this adverse side effect suggests future difficulties in obtaining trust in pandemic preparedness and precautionary measures  in case of emerging health threats. In this article I will use qualitative interviews with individuals from the following three groups comprising different formations of the pandemic: a) authorities, policymakers, and decision-makers, b) narcolepsy families,  and c) health care workers and medical researchers. Ethnological questionnaires were also sent out to a broader Swedish public audience. The article discusses how the results can have an impact on pandemic preparedness and management. The concept of impact is discussed from the point-of-view of innovation- and challenge-driven research politics that has been dominant for several years. Five different themes are discussed: 1) Reflexivity among policy- and decision-making, 2) Historical and European comparisons to create a broader context for pandemic preparedness, 3) Improved communication and broadening of competencies within pandemic preparedness, 4) Using networks to gain new knowledge about spreading of pandemic influenza, and 5) Acknowledgment, knowledge support and contextualization for families with narcoleptic children.

The term "medical humanities" describes an internationally vibrant and growing academic field comprising broad areas, such as therapeutic uses of arts in health, pedagogical interventions in the medical curricula, and critical resources for performance, reflexivity and practice. This introduction gives an overview of the debates and critiques involved in the pedagogical uses and also a discussion about medical humanies' critical potential for multi- and interdisciplinary research.

The Medical Humaniteis network at Umeå University is presented, together with introductions to seven articles from different humanistic disciplines at Umeå University.

Statens Veterinärmedicinska Anstalt (SVA) erhöll i slutet av 2016 medel från forskningsrådet Formas för att säkra material, information och lokal kunskap kring Ombergs-utbrottet i syfte att bygga kunskap kring mjältbrand, detta för att vi i framtiden bättre ska kunna förutsäga, förebygga och hantera liknande händelser. Inom projektet (Omberg 2016 – prov- och datainsamling för att bättre förstå mjältbrandens komplexa epidemiologi), med forskningsledare statsepizootolog Ann Lindberg, ingår även föreliggande etnologiska delstudie med Britta Lundgren som huvudansvarig (WP 4 Utbrottsetnografi – kulturella och sociala perspektiv).

Under sommaren 2016 skedde ett utbrott av mjältbrand i Ombergsområdet i Östergötland. Totalt omfattade utbrottet 15 dödsfall hos djur. 10 dödsfall inträffade inom 6 olika besättningar hos boskap, samt 1 häst och 1 får. Vidare har 3 älgar i området konstaterats döda av mjältbrand.

Den etnologiska undersökningen utfördes under en koncentrerad period i månadsskiftet maj-juni 2017 med platsbesök och intervjuer med ett antal djurägare vars djur dött underutbrottet. Intervjumetoden är inspirerad av s k focused ethnography där fältarbete med intervjuer pågår under relativt kort tid och frågorna begränsas till ett speciellt fokus, i detta fall människors erfarenheter och uppfattningar om mjältbrandsutbrottets orsaker och om myndigheternas åtgärder.

Rapporten redogör för ett antal teman som framkommit under intervjuerna. Hit hör Tidigare kunskap om mjältbrand, Känslor inför djuren och djurs sjukdomar, Avspärrningar, Hanteringen av döda djur, Smittsamhet och materialitet, Tankar om smittkälla och smittvägar, Saneringen, Vaccinationen – genomförande och konsekvenser, Arbetsbelastning och ekonomiska ersättningar, Om hälsoriskerna för egen del, Medial och publik uppmärksamhet, Samspelet med och mellan myndigheterna, Tankar och känslor inför framtiden.

Samtliga teman innehåller kunskap och åsikter som är av nytta för det fortsatta beredskapsarbetet inför nya utbrott. I rapportens slutdiskussion koncentreras detta under rubrikerna Risk, osäkerhet och beredskap, Utbrottet som ”krismode” – riskbedömning och riskhantering med potentiella ekonomiska och politiska konsekvenser, Mjältbrand som möjligt bioterrorhot samt Kontinuerligt lärande i samverkan. Det viktigaste bidraget i rapporten rör Ombergsutbrottets karaktär av att vara ett ”ovanligt” utbrott i och med den förhållandevis stora geografiska utbredningen och att utbrottet drabbade flera djurarter. Vad innebär detta för kommande riskbedömningar och riskberedskap? Vidare diskuteras nödvändigheten att på ett tidigt stadium involvera och erkänna djurägarnas roll i kunskapsproduktionen och deras betydelse för ett institutionellt lärande om mjältbrandsutbrott.

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.

During the swine flu pandemic of 2009–2010, all Swedish citizens were recommended to be vaccinated with the influenza vaccine Pandemrix. However, a very serious and unexpected side effect emerged during the summer of 2010 and more than 200 children and young adults were diagnosed with narcolepsy after vaccination. Besides the tragic outcome for these children and their families, this adverse side effect also suggests future difficulties in obtaining trust in vaccination in case of emerging pandemics, and thus there is a growing need to find methods to understand the complexities of vaccination decision processes. This article explores written responses to a questionnaire from a Swedish folklife archive as an unconventional source for analysing vaccine decisions. The aim is to investigate how laypersons responded to and re-interpreted the message about the recommended vaccination in their answers. The answers show the confusion and the complex circumstances and influences in everyday life that people reflect on when making such important decisions. The issue of confusion is traced back to the initial communications about the vaccination intervention in which both autonomy and solidarity were expected from the population. Common narratives and stories about the media or ‘big pharma capitalism’ are entangled with private memories, accidental coincidences, and serendipitous associations. It is obvious that vaccination interventions that require compliance from large groups of people need to take into account the kind of personal experience narratives that are produced by the complex interplay of the factors described by the informants.

During the start of the A(H1N1) pandemic 2009, the WHO talked of the pandemic as an extreme expression of the global need for solidarity, and vaccination as the preferred national response. While seasonal vaccination mostly is framed as an individual benefit, the pandemic mass-vaccination in Sweden was framed in terms of solidarity. In the context of public health in Sweden, solidarity has worked as a rational evidence-based argument for politicians as proof of a reflexive and confident welfare nation. Solidarity was also perceived as an emotion that was possible to enact in bodily practice and would serve the goal of reaching herd immunity for the population. In this article these "politico-somatic" aspects of the pandemic preparedness and response are examined through qualitative methods such as ethnological interviews and fieldwork. The article discusses the entangled articulations of compassion and containment during the pandemic and how the side effect of narcolepsy from the vaccine Pandemrix disrupted the interpretations of solidarity as a relational concept. For the future, it is important to learn the lessons from the pandemic response, including how the issue of the side effect will influence coming preparedness and how the forces of compassion and containment will work. As long as it is not ignored, this side effect can enable the possibility to create strengthened reflexive awareness, which in turn strengthens public trust regarding possible future interventions.

The need for new knowledge about lay representations of contagions, immunity, vaccination, common colds, and influenza has become clear after the A(H1N1) pandemic and the resulting challenges regarding pandemic preparedness. This article analyzes written responses from 67 persons, mostly women, to a semi-structured questionnaire about colds and the flu. Three themes are discussed: “Common cold and flus as ritualized experiences”, “Me, my body, and my immune defense”, and “Regulations of space, place, and behaviors.” Overall, the narratives were about trust, value, and respect in the body, in lived experiences, and in the capacity to ‘help’ and ‘nurture’ the immune system, but also about the feeling of powerlessness when perceiving inadequacies in other people’s parallel interpretations and actions. Pandemic preparedness policies need to acknowledge the multiple ‘immunity talk’ in the responses to create productive, ongoing relations with the ‘Other’, that rely on people’s trust and resilience, rather than on people´s fear.

Pandemic preparedness has been discussed since the 1990-ies. During the swine flu pandemic of 2009-2010, interventions were performed according to plan; the most important was mass vaccination using the Pandemrix© vaccine. In retrospect the pandemic was considered mild. However, the massvaccination had unexpected adverse effects – an increased number of narcolepsycases among children and young people. This paper discusses the emphasis that the preparedness plan placed on mass vaccination and how authorities and politicians acted in consensus around the message: "Protect yourself, protect others, stop the spread". The underlying argument for solidarity demands responsibility when unexpected adverse effects emerge. Awareness of the relational and reciprocal nature of solidarity is needed in future work, with a broadening of competencies in pandemic preparedness to include the humanities and social sciences.