516135 research-article2013
HEA18510.1177/1363459313516135HealthLohm et al.
Article
Biography, pandemic time and risk: Pregnant women reflecting on their experiences of the 2009 influenza pandemic
Health 2014, Vol. 18(5) 493–508 © The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1363459313516135 hea.sagepub.com
Davina Lohm
Monash University, Australia
Paul Flowers
Glasgow Caledonian University, UK
Niamh Stephenson and Emily Waller The University of New South Wales (UNSW), Australia
Mark DM Davis
Monash University, Australia
Abstract During the 2009 H1N1 pandemic, it was identified that women in the third trimester of pregnancy were particularly at risk of serious respiratory distress. At-risk women were advised to seek vaccination, avoid contact with anyone unwell, maintain hygiene routines and stop smoking. We examine this situation of emergent and intense risk produced at the intersection of individual biography and the historical event of a public health emergency. We examine how pregnant women took account of risk, how they negotiated incomplete and at times contradictory advice and shaped courses of action that assisted them to manage the emerging terrain of pandemic threat. Public health risk management advice was endorsed, although choosing vaccination was fraught. Social distancing, too, was seen as a valuable risk moderation strategy. However, time, and specifically the intersection of individual pregnancy timelines with the pandemic’s timeline, was also seen as an important risk management resource. The implications of this mix of sanctioned and temporal risk management practices are discussed. Keywords health policy, illness behaviour, risk and health Corresponding author: Davina Lohm, Monash University, Wellington Road, Clayton, Melbourne, VIC 3800, Australia. Email: [email protected]
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Introduction This article examines the circumstances for some pregnant women who faced the threat of a novel pandemic influenza virus in 2009. During the pandemic, it was identified that pregnant women were at high risk of morbidity, mortality and negative outcomes for their foetus (Dolan et al., 2012; Pasternak et al., 2012; Pierce et al., 2011), especially those in their second or third trimester (Government of Western Australia Department of Health, 2009: 1). Unlike others at risk (older members of the public, those with respiratory conditions or compromised immune systems and Aboriginal and Torres Strait Islanders in Australia), pregnant women were expected to protect not only themselves but also their unborn children. Individual biography – reaching a particular point in pregnancy – combined with the historical advent of a global pandemic influenza emergency produced emergent ‘at-risk’ subjects with many implications for the women concerned, their families and for public policy. In this article, we examine how women negotiated this situation for themselves in two national contexts: Australia and Scotland. We document their experiences of finding themselves at risk and the courses of action they took. We give emphasis to the ways in which the women negotiated emerging public health advice and articulated it with their own individual circumstances. Drawing on theories of risk, we consider implications of emergent risk identities and situated risk management for global and national efforts to moderate the impact of pandemic influenza and related respiratory pathogens.
Background In April 2009, the Mexican Government reported to the World Health Organization (WHO) that they had detected increased numbers of people with influenza symptoms requiring hospitalisation (Briand et al., 2011: 249). On 24 April, the WHO issued its first public response (Maloney, 2009: 1591) leading to worldwide efforts to, at first, contain and then moderate the impact of the pandemic. In Australia, the number of confirmed H1N1 cases peaked in mid-July and a vaccine became available on 30 September 2009 (Bishop et al., 2009: 2592). In the United Kingdom, the estimated peaks of the pandemic were mid-July and mid-October (Donaldson et al., 2009: 3), and on October 21, a vaccine became available in Scotland (Scottish Government, 2009). In early 2010, one Australian State launched a new seasonal influenza immunisation programme for children and then quickly suspended it due to an increased rate of febrile convulsions in young children (Armstrong et al., 2011; Department of Health and Ageing, n.d.). Before 2009, planning for influenza pandemics had been undertaken by the WHO in collaboration with national governments (Department of Health and Ageing, 2011; Health Protection Agency (HPA), 2006; WHO, 2007). Between 1 June and 31 August 2009, 66 pregnant women in New Zealand and Australia were admitted with H1N1 to hospital intensive care units, representing 9.1 per cent of those admitted (pregnant women are only 1% of the general population) (The ANZIC Influenza Investigators, 2009). In Australia, up to November 2009, 32 per cent of women aged between 15 and 44 years hospitalised with H1N1 were pregnant (Chief Medical Officer – Department of Health and Ageing, 2009). By 31 July 2009, the WHO and other governments had
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declared that women in their second and third trimester of pregnancy were particularly at risk of complications associated with H1N1 infection, including pneumonia, difficulty breathing and dehydration (NHS, 2011). The H1N1 pandemic, therefore, brought heightened risk – including influenza’s uncertainties and tensions to do with how best to guide clinical intervention – into the lives of some pregnant women. Influenza is a familiar and ubiquitous health threat, yet the virus regularly confronts the world with novel risks. Each year, worldwide, there are about three to five million cases of severe illness and about 250,000 to 500,000 deaths due to influenza (WHO, 2009). Influenza is produced by a family of orthomyxoviridae viruses that mutate over time through processes of antigenic drift and shift (Centres for Disease Control and Prevention (CDC), 2005; Neuman et al., 2009). Shift is more troublesome than drift as a new virus may enter a population that lacks sufficient immunological resistance (CDC, 2005; Neuman et al., 2009). Typically, public health systems become aware of a new virus strain after it has spread into a population, making it difficult to assess the level of threat that a particular outbreak will pose before public health interventions begin (Williams, 2008: 77). In 2009, policymakers and public health experts were faced with just this dilemma. When influenza-related deaths were detected in Mexico and the virus itself was detected in the United States, global and national health systems commenced their pandemic control interventions, including advising the public to adopt hygiene practices, avoid crowds, maintain good health habits and seek vaccination when it became available (WHO, 2010). As early as 1 month after the outbreak of the pandemic in the United States, it became evident that pregnant women were particularly at risk (Siston et al., 2010: 1518). Managing a pandemic after it has emerged is equally fraught. For example, the WHO regards the use of vaccines and antiviral drugs as vital tools, both to attenuate spread of pandemic influenza and to protect the health of individuals, particularly those with respiratory or immunological vulnerabilities (Hagan et al., 2008). However, concern over the safety of vaccines and drugs can lead to debate and public rejection. Such concerns were raised over the safety of the newly developed H1N1 vaccine for pregnant women. Pregnant women are typically encouraged to refrain from the use of certain drugs and vaccines as they are contraindicated in pregnancy (Lynch et al., 2012: 1658). In the H1N1 pandemic, however, the CDC (2009) and Australian National Centre for Immunisation Research and Surveillance (2010) encouraged pregnant women to be vaccinated. In the United Kingdom, public health systems produced posters and leaflets directly targeting women attending antenatal clinics. According to Lynch et al. (2012), pregnant women in the United States made vaccination decisions by balancing their concerns about possible negative effects of H1N1 vaccine against the potential protection it provided. Sim et al. (2011) in their research of 10 pregnant women in Scotland noted that women found the decision regarding whether or not to vaccinate to be harrowing, leaving them to choose ‘the “least worst” option in the context of a difficult set of choices’ (p. 509). Since 2009, research findings have emerged that may have allayed some of the women’s fears. For example, Oppermann et al. (2012) and Heikkinen et al. (2012) found no increase in spontaneous abortion, major malformation, prematurity or intrauterine growth retardation in H1N1 vaccinated women they studied compared to a control group.
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The eruption of pandemic influenza risk in women’s lives also accentuated the existing cultural expectations with regard to responsibility and good motherhood (Rapp, 2000: 86, 87) as they navigated the risks and imperatives that pertain to pregnancy itself. For most women in Australia and the United Kingdom, pregnancy is medicalised, requiring constant monitoring to avert complications (Barker, 1998; Katz Rothman, 2007: xxii, 1985). Such is the expectation of good motherhood that women are expected to eliminate all risk, and even to impose a ‘small or theoretical risk’ to the foetus for the benefit of the pregnant mother has become ‘anathema’ (Lyerly et al., 2009: 40). Women are required to seek out and comply with specialist medical advice, leading to the diminution of women’s confidence to independently manage their own pregnancy (Barker, 1998; Purdy, 2006; Weigers, 2003). Pregnant women are regularly exhorted to police their bodies (Lupton, 1999: 64), such as by avoiding smoking and alcohol consumption (Phelan, 2001: 1). Women who do not abide by such advice can be regarded as ‘ignorant, lazy (or) undisciplined’ (Bessett, 2010: 370) and have become the focus of studies designed to understand and thus reduce these behaviours (Graham et al., 2010; Morojele et al., 2010). Such is the burden of responsibility that at times women are regarded as being solely responsible for the health of the foetus (Ivry, 2007: 251) despite the many other factors that can impact upon foetal health (Harper and Rail, 2012: 69). Women are said to be doubly at risk (Lupton, 1999: 63): the health of their unborn child is medically monitored and provides the rationality for self-discipline, and their own healthy conduct is in question. This ramified self-surveillance is deeply individualising (Foucault, 1988), forcing women into contemplation of their own ‘good motherhood’. For women in our research, individualisation poses questions of the self-managed biography, including pregnancy, and what resources the mothers call on (and how effectively) to carry out their responsibility to secure their health and that of their progeny. Such individualisation nevertheless provides the means for governing subjects as moral agents and is, therefore, often articulated with the gendering of social practices and other normative forces (Adkins, 2002), including expectations of good motherhood (Rapp, 2000: 86, 87). Risk-related individualisation is also forensic in the sense that the apportionment of blame often follows a rationality of deciding individual responsibility for harms to self and others (Douglas, 1992). It follows, then, that for women doubly charged with caring for themselves and their unborn child, processes of individualisation are intense and complex. Within this article, therefore, we explore risk subjectivity in connection with expectations of good motherhood, in order to shed light on how women experienced the advent of pandemic influenza risk in their lives and to identify what risk management resources women employed to manage risk and shed light on subjectivity in our era of emerging infectious diseases.
Methods In late 2011 and early 2012, five interviewers based in Sydney, Melbourne and Glasgow conducted in-depth individual, paired and focus group interviews with 116 respondents to discuss their experiences of influenza and the H1N1 pandemic. We recruited participants in Australia and Scotland to ensure that we addressed the global qualities of the
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2009 pandemic in our exploratory, theory-building research. There are broad similarities across the Scottish and Australian health systems since national insurance bodies (the National Health Service (NHS) and Medicare) fund basic health care, although the levels at which this is augmented by private health insurance do vary. In addition, the global response to the pandemic meant that UK public health authorities were in contact with Australian authorities, at times on a daily basis. Analytically, the Glasgow interviews helped reveal what was particular to the Australian situation where the declaration of a global pandemic coincided with the Southern hemisphere influenza season, along with commonalities in people’s experiences across the two countries. Participants were recruited through posting flyers, direct contacting of organisations (>50), and snowball recruitment among the general public, supplemented by purposive sampling through the personal networks of the research team to reach specific sample groups (e.g. young men). Ethical approval was obtained from Monash University Human Research Ethics Committee. Written consent was obtained from participants. Four purposive criteria were utilised to select respondents: women who were pregnant in 2009 or 2010, older members of the community (71+ years), people with compromised immune systems or chronic respiratory illness and people who self-identified as being healthy. These criteria were led by epidemiological literature on pandemic and seasonal influenza. Of the 116 respondents, 70 were women and 14 were pregnant at the time of the pandemic in 2009/2010. These interviews and focus groups were richly nuanced. However, the accounts of the pregnant women stood out as they highlighted the stresses created when these women became cast as ‘at risk’ in a novel way at such a significant and vulnerable time in their lives. Three of the pregnant women lived in Sydney, five lived in Melbourne and six lived in Glasgow. Due to the voluntaristic method of recruitment, these women were from middle-class backgrounds: 12 had a British/ European backgrounds, 1 had an Asian background and 1 a Black African background. All were between 20 and 40 years of age. The pregnant women’s accounts were generated through one to one interviews and a focus group that permitted them to reflect on their own experiences in some detail and allowed the interviewee and interviewer to explore and negotiate meanings in considerable depth. Through team consultation, a semi-structured topic guide was designed and used to guide discussions in all interviews. Initially, respondents were asked to speak about their own backgrounds, then their experiences with influenza and finally about public communications and the public health response to pandemic influenza. These questions obtained key information, but were also open-ended to provide respondents the opportunity to tell their own stories, to elaborate upon factors that were of particular significance to them and to provide interviewers the opportunity to ask follow-up questions to seek clarification or more detailed information. Respondents were allocated pseudonyms, and any identifying details were altered to ensure confidentiality. All interviews were audio-taped and transcribed. All interviews took place after the debates in Australia with regard to the potential side effects of the Panvax H1N1 vaccine. Data analysis was a multistage, team activity. First, primary thematic areas were identified in all the data and coded using NVIVO (e.g. people managing influenza, vaccine, vulnerability) in both Sydney and Melbourne (the Scottish interviews were coded in Melbourne). A period of piloting and double-coding was undertaken to ensure
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consistency between the Melbourne and Sydney coders. Regular email and telephone communication was maintained to discuss the progress of the coding and review and to refine the codes. Second, thematic categories were further analysed into a suite of interrelated and inductively derived child nodes (e.g. responsibility, social norms). Later, all the transcripts and NVIVO files of the pregnant women were again examined by the senior author to note the specificities of their responses to the pandemic.
Responding to emergent risk The accounts provided by the women exhibit self-surveillance. These pregnant women provided reasoned explanations of why they acted as they did, even if such action differed from public health advice and what they believed other pregnant women were doing. Importantly, the women considered how pandemic influenza guidelines applied to their lives and designed strategies that they felt best suited their situation, often combining, refashioning and negotiating advice on how to act. As we will show, however, while the women considered options and came to reasoned decisions, the information they drew on was often incomplete (as scientific knowledge developed through the progression of the pandemic) and contested (as health practitioners offered conflicting advice). Furthermore, the women were aware of these provisions on knowledge, intensifying the negotiated quality of their risk management practices. The respondents reported that they had been surprised to find that they were at particular risk of pandemic influenza. Helen, who was in her 20s and lived in a rural area near Glasgow with her children, uses the term shocked to explain her experience of being thrust into the forefront of pandemic alarm: I suppose it was kind of a shock. In fact, it was a kind of shock to me because I was more used to be getting out of things because I was pregnant rather than getting involved with things, you know. Like work: I didn’t need to do deliveries. I didn’t need to give blood anymore. I was getting out of things because I was pregnant and, suddenly, this was something that, had I not been pregnant, it would’ve just washed over the top of me. So I suppose it was a bit of a shock that suddenly this was meaning that I had to think about something. (Glasgow)
Sarah also remarked on how the pandemic suddenly became a personal concern when she heard about the plight of another pregnant woman: I probably saw it on the news, read it in the papers, heard it on the radio, it kind of felt everywhere. I think as well, I don’t know if you were aware but there was a lady who was pregnant in [name of hospital] who was really ill. You know she was on that machine for breathing and I think that was definitely on the local news every night for weeks, you know, and so that was just like, ‘Oh my God, that could be me!’ So I think that really struck a chord, because she was pregnant and she was really ill. (Glasgow)
Helen and Sarah indicate that the simultaneity of pregnancy and pandemic propelled them into a new and unknown space of ‘hyper-risk motherhood’. This emergent risk raised questions of health for both self and the unborn baby. Rebecca, who lived in Glasgow with her husband and children, made this comment:
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Well, (sigh) when you’re pregnant everything just becomes about the baby. Everything you eat, everything you do, how much sleep you get, everything is for your baby. You just want to try and make your baby as healthy as possible and you want to try and keep your baby safe. So I just kept thinking, ‘If I get unwell, if something happens to me, if I get really ill, then that’s going to effect the baby and the baby is going to end up ill or worse?’ And I just couldn’t you know. You just feel completely responsible. You just feel like your whole everything: your whole life is for the baby. (Glasgow)
According to Rebecca’s account, conferred responsibility for the unborn child was takenfor-granted (Bessett, 2010: 373). Interviewees spoke of emotional stress given their fear of the unknown effects of the new, and potentially severe, infection and its vaccine. Such accounts contrast with many of our other interviews and focus groups, where informants were voluble, but not overly concerned regarding their risk of pandemic influenza.
Biomedical risk management As might be expected, in general, the women’s talk and perspectives are informed by biomedical knowledge and advice. However, when examined at the individual level, there is a spectrum of responses that exhibit (a) some dissonance between women’s risk management and expert advice and (b) tensions and varied interpretation of public health messages by people in the health workforce assisting pregnant women. Such dissonance and tension are consistent with the risk society thesis (Beck, 2011), where expert advice is often uncertain and contradictory, foregrounding the challenges of establishing relations with expert knowledge. Marilyn, for example, was vaccinated despite being unconcerned about the risk of H1N1. She presents herself as a compliant, health citizen, conforming to her physician’s recommendation and presenting a rather docile subject of biomedical regulation: I also heard it through my doctor, going to the doctors. She also suggested that I get the swine flu (immunisation), being pregnant. I went and did it. (Melbourne)
Marilyn does not mention an awareness of alternative perspectives concerning the merits or hazards associated with vaccinations. In stark contrast, other women wrestled with such decision-making. Sarah, for example, suffered from a respiratory illness and explained her decision to be vaccinated: I was possibly overcautious in my pregnancies for fear of something happening. So that’s possibly played a part in me getting the immunization as well and being ‘more careful’, as in, not going in that room [a room where a patient had H1N1] and being so sure I wouldn’t go in that room and I would definitely get the immunization. Although I did debate it in my head for a wee bit. I think, as I was saying, my experience of working in the pharmaceutical industry, I am a great believer in medicine. So, I kind of felt they wouldn’t put something out there and tell you to go and get it done, if they didn’t know it was safe. And yet everything has got a risk. But it’s pretty minimal I’d imagine. So I suppose I do have faith, a wee bit. (Glasgow)
While Sarah noted some concern about the vaccination, she describes her decision to be vaccinated as informed by her faith in biomedicine, possibly derived from her reliance
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upon it to control her respiratory illness and her experience of working in a medical environment. It is important to note her reference to the ubiquity of risk and related use of the religious discourse on ‘faith’ and ‘believer’. Faith, apparently, is what is needed to live with the inherent risks of biotechnology, even if they are reasoned to be small. For interviewees like Sarah, there was a clear sense of having to take on the role of decisionmaker, which connoted agency but also a corresponding crisis of risk inflected with responsibility and culpability. This crisis is derived from having to take account of the dilemmas and paradoxes in expert knowledge on risk and the imposition of blame should their actions result in a negative outcome for either themselves or the foetus (Douglas, 1992: 6).
Social distancing Along with biomedical risk management, some women drew on spatial methods. Social isolation was a key public health strategy to stem the spread of H1N1. For example, a 2009 Fact Sheet stated, ‘Stay away from others if you’re sick or they’re sick’ (Australian Government, 2009). Influenza is generally thought to spread when an infected person exhales droplets that land on the eyes, nose or mouth of another: for infection to spread people must be within a metre of each other (Department of Health and Ageing, 2008: 11). H1N1 was thought to spread similarly (Sullivan et al., 2010). In interviews, however, social isolation was translated into judgements of spatial proximity to the H1N1 outbreak and crowds. Marilyn explained what she knew of H1N1: I don’t think anybody in my area knew anybody who had it. I think if it was somebody who knew somebody who had it, I think a lot of people would have gone into a panic. But otherwise, not a panic. They would have, I think, taken it more seriously. But it wasn’t close enough to home for people, for my friends anyway, to be too concerned. (Melbourne)
Marilyn’s relaxed approach, provided by her perceived spatial distance from infection, is apparently bolstered by her account of the risk consensus among her friends. Her lack of concern can only be understood in the context of her relatively isolated place of residence (Tulloch and Lupton, 2003: 8). H1N1, while very present in Melbourne, was deemed ‘remote’ from her urban-fringe home, providing a form of cordon sanitaire between her and contaminated people (Waldby et al., 1993). Marilyn was not alone as other respondents, who were not pregnant, made similar comments. Knowing no one who had the virus provided an impression of safety. However, a person who has influenza can spread the virus prior to the onset of symptoms and/or be asymptomatic (WHO Collaborating Centre for Reference and Research on Influenza, n.d.). Since contact with pre-symptomatic infected people remained a possibility, strategies of limited social isolation may not have eliminated all risk. Also, given that it was April 2009 when H1N1 was first identified in Mexico and in the United States, and it is thought to have subsequently arrived in Scotland on 27 April 2009 (McLeish et al., 2011) and Australia on 9 May 2009 (Kelly et al., 2011), it would appear that, while distance provided Marilyn with an illusion of safety, it could not be deemed absolute.
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In contrast, some interviewees were mobilised into action because of their perceived proximity to the pandemic. When the H1N1 pandemic actually broke out in her neighbourhood, Gills’ response was immediate: Gill: Well given that the first case in Australia broke out at [school] and my son, my son was three and he was at [childcare centre], I pulled him out. So when my husband picked him up that day I was at work, I said, ‘Take him home. Give him a bath. Wash his clothes’. I stopped sending him and I was one week off my maternity leave so I stopped work a week early. I didn’t go to the supermarket, didn’t really mix. Interviewer: So really reduced your contact with people? Gill: Very much so, yes. Interviewer: How did you manage to cope with that in terms of I s’pose the practicalities of life? Gill: Well, I got groceries delivered online. We went out but to places like the Botanic Gardens and just tried to avoid shopping centres and movie theatres and play groups. And, we did see family, but I did ask them to wash their hands when they came in and stuff. (Melbourne) Gill depicted her actions as prompt and decisive. There was no time to deliberate. Instructions to her husband left no room for error: they were clear and direct as she took command of the situation. Her faith in her actions to protect her family was uncontested as she systematically put into place expert guidelines for reducing infection. As no vaccine was available at this time, her need to quarantine her family was paramount. Jan felt similarly concerned when cases of H1N1 began to occur in close proximity to her inner city home: Jan: But it was really frightening because we were in the inner city so we were right near [suburb] where the first kind of local case hit. That was really confronting at the time. Interviewer: It was close. Jan: It was really close and it felt close, and I was, actually, at the time, felt like, I mean, I feel like ridiculous saying this now, but I felt like I wondered whether we should go far away somewhere remote and stay in a house until it had passed, because I was that fearful, of what the implications would be. (Melbourne) Besieged by the influenza outbreak, Jan contemplated escaping to a safe, isolated haven to protect her family. While noting that such an idea may seem ‘ridiculous’, Jan’s account emphasises just how her fear of H1N1 was heightened by its proximity and the lack of a spatial cordon sanitaire to provide a semblance of protection.
Time and risk management While orthodox biomedical and social isolation risk management strategies were employed by interviewees, time was also seen as a risk resource. The temporal
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management of risk is common in, for example, chronic diseases, where patients and practitioners monitor clinical progress over time or at important biographical milestones. The temporal management of risk was explicit in the phases used to manage pandemic influenza and in the sense that efforts to assess and manage influenza risk are predicated on future amelioration. The interviewees, however, regarded time, or more properly the timing of their action, as an important resource for them and their unborn babies. Not only was it seen that biomedical knowledge and expertise developed along chronological lines (the cumulative understanding of the specifics of H1N1), for some women, a core part of risk management related to having expectations of the unfurling of expertise within pandemic time, their own pregnancy timeline, and the intersections of these. In this way, some of the dilemmas associated with the risks of vaccination, in particular, could be, apparently, avoided. Maude, for example, lived in a rural area on the outskirts of Glasgow with her husband and children, and explained the dilemma she faced when she found she was pregnant in early 2010. She talks of anticipating changing knowledge of the side effects of the vaccine as the basis for making a decision: I thought, ‘Well there was obviously a lot of babies who now have been born and have had this’ and maybe I think part of my waiting until the third trimester was also that more babies would have had it, whose mums would’ve been given the vaccine when they were in the later stages of pregnancy, so maybe there was more evidence to say, ‘Yes these babies are all fine, but they were all … you know they all had the vaccine later in the pregnancy rather than early in the pregnancy’. So I think that’s maybe why if I was going to have it later. And if they’d said, ‘You must have this’ I think I would’ve still pushed to say, ‘Not until I get to the third trimester’. (Glasgow)
Maude indicates that one way of moderating the risks to herself and her baby was to delay vaccination until evidence emerged regarding its safety. This engagement with risk such that ‘the illnesses of some should be transformed into the experience of others’ (Foucault, 1976: 84) is a common strategy. Maude, however, is not necessarily simply a risk-calculating subject. Since all side effects are strictly unknown in a new vaccine – at the time when she was making her decision – Maude had to bear responsibility for the vaccination decision. Maude’s response is not unexpected given that pregnant women are generally reluctant to have any vaccine in pregnancy, even if they are generally supportive of vaccination (Patten et al., 2006: 351). This situation is particularly acute since so much responsibility is now loaded upon the pregnant mother (Lupton, 1999: 67). Maude’s management of the temporal unfolding of knowledge was, therefore, a means of managing the dilemmas and imperatives that come with risk-infused decisions. Indeed, Maude speaks of abdicating final responsibility to the expertise and opinion of her physician: I thought, ‘If I don’t think about this, if no one asks me, ‘Have I had it,’ then it’s obviously not that important and they don’t think I need to have it. And, I don’t have to make that decision whether to have it or not. Or, if I was consciously like, I don’t really want to have it and I don’t think I did really want to have it, but if they tell me, if someone tells me I really should, and if a health professional is telling me that I really need to have it, then I’ll have it. (Glasgow)
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Maude reported that, in the end, she did not have the H1N1 vaccine as the baby was born before the next influenza season. Her story suggests the exploitation of biographical and pandemic time to navigate her situation. Implied here, too, is also trust that sound knowledge will, given time, emerge. Maude is therefore critically engaged with risk and medical expertise in a way that ultimately serves to appropriate (not reject) it, but according to matters of personal biography and its intersections with the pandemic timeline. Jan, who suffers from respiratory illness, was also pregnant in 2009. Despite being regularly vaccinated against seasonal influenza, she chose not to be vaccinated against H1N1 due to her concerns about the safety of the new vaccine. Her decision was based upon her physician’s advice, which supported her own research on the unfolding of expertise over time. Jan explained, And her [Jan’s doctor’s] advice was, in spite of all of these stories about pregnant women in their third trimester getting Swine Flu and being in like threatening, critical situations, she felt that the risk of, associated with a new vaccination would outweigh the potential risk of actually having the vaccination. So she advised me to not do it and to wait until the next round of flu injections when they would be more refined and they would know more about the virus itself, and to just ride it out. (Melbourne)
Jan’s account gives the impression of critical engagement with risk and close cooperation with her physician. Time is here referenced in the form of advice from the medical practitioner to wait for vaccination. Like Maude, the doctor also utilised time as a resource to determine the safety of the new vaccine. Of note is that despite their rigorous consideration of the merits of vaccination, these women finally abdicate responsibility to their doctor. The advice given by Maude’s and Jan’s doctors differed from that given by Marilyn’s, highlighting disparity in medical advice and therefore uncertainty. These engagements with risk and time resonate with Luhmann’s (1993) notion that ‘the more we know, the better we know what we don’t know, and the more elaborate our risk awareness becomes’ (p. 28).
Conclusion When the H1N1 pandemic emerged in 2009, our interviewees were forced to make decisions with potentially life changing ramifications for their unborn babies and for their own health. They shaped their responses according to their particular pregnancy timeline, social situation and cultural expectations regarding motherhood. Each was forced to evaluate their own situation, weigh up options and make decisions. Some women chose to isolate themselves, some chose to be vaccinated, some rejected vaccination, while, for others, the pandemic passed with little impact on their lives. As noted, cultural expectations of good motherhood place women in the situation of caring for the health of their foetus and of their own bodies: a doubling of health responsibilities. Women with pre-existing health conditions could be said to face a tripling of such health risks. The advent of the H1N1 pandemic worked in a similar way to complicate the pregnancies of those women we interviewed, even if only indirectly and through heightened awareness of the hazard that an influenza infection might bring them and
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their unborn babies. The women’s pregnancies were closely monitored by medical practitioners highlighting the potential risks associated with pregnancy and the pandemic and hence the importance of self-surveillance and acquiescence to all guidance to preserve the highest chances of a positive birth outcome. This was one of the least remarked effects of the 2009 pandemic that it sharpened expectations of good motherhood for some women. It is known that disease outbreaks are rarely egalitarian. Some are more affected than others and some take on roles in the social responses to health emergencies, which others do not. Our analysis shows that for some women at a particular point in their pregnancy, the 2009 pandemic pitched them into close focus on their health and that of the foetus. Expectations of good motherhood and pandemic risk therefore interact, a dynamic that draws attention to gender and the social responses to pandemics. In time of a public health emergency, women appear to be called on to act in ways that are particular to their gender and biographical moment, an effect that is likely to characterise future social responses to pandemics and other emerging infectious diseases. One important effect of the collision of pregnancy timelines with the H1N1 pandemic was that the women found themselves newly at risk, to be special subjects of the efforts to manage the pandemic. This new found status had emotional repercussions. Given that motherhood is loaded as it is with expectations of safeguarding health of mother and baby, the pandemic intensified and focussed the women on themselves and their pregnancy in new ways. Our interviewees endorsed and modified orthodox public health advice with regard to the management of risk for pandemic influenza. Biomedical methods of risk management such as vaccination and social distancing were considered and exploited wherever possible. These women were highly engaged and intensely aware of their responsibilities as mothers and exploited these risk management approaches, a stance that is explained by cultural expectations on women to perform the role of carer for themselves and the foetus. Yet, this was not always easy. Some had trouble reconciling the advice to accept a rapidly developed new vaccine with general advice to avoid many vaccinations and medications during pregnancy. Responsibility for the foetus and the advent of the pandemic thrust women into an escalation of risk awareness and culpability in an unclear and rapidly changing terrain. Of most significance in the accounts provided by our interviews was time and, in particular, the intersection of their own pregnancy timeline with that of the pandemic. Our interviewees spoke of assessing their own risk in light of their own stage of pregnancy. Others made note of managing the uncertainties of the pandemic and the methods used to manage it by delaying, for example, vaccination until such time as more was known. These accounts suggested that the heightened risk awareness of these women was imbued with temporalised understandings of risk and uncertainty, effects that may be associated with the way in which pregnancy itself is strongly inflected with time, but that also echoes the logic of a pandemic as a temporally bounded event. Time is important to the management of both seasonal and pandemic influenza. The first outbreaks of a novel virus are closely monitored so that governments around the world have time to develop effective vaccines. Significantly then this temporalised logic of risk management has entered into the life spaces of members of the general public as indicated in the accounts of the women we interviewed.
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The arrival of new influenza virus for which populations lack immunity can quickly thrust people into positions of risk with few reliable tools with which to curtail their vulnerability. In the case of the 2009 pandemic, pregnant women devised innovative strategies in an attempt to manage the risks of infection. As women they were accountable for the decisions they made to enable them to carry their unborn child safely through the period of intense risk. The role of motherhood is intensely imbued with responsibility – a responsibility keenly appreciated by the women. Acknowledgements We thank Casimir Macgregor for assisting with data collection and everyone who agreed to participate in interviews and focus groups.
Funding This research was funded by an Australia Research Council Discovery Project grant (DP110101081) with additional funding from Glasgow Caledonian University.
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Author biographies Davina Lohm is a Research Assistant in the School of Political and Social Inquiry, Monash University, with a background in sociology and education. Davina is currently researching the social aspects of pandemic influenza. Paul Flowers is Professor of Sexual Health Psychology, School of Health and Life Sciences, Glasgow Caledonian University, UK. Paul’s current work includes research translation and impact studies, the use of Interpretative Phenomenological Analysis (IPA) in applied research, HIV prevention research and pandemic influenza. Niamh Stephenson is a Senior Lecturer in Social Science at the School of Public Health and Community Medicine in the Faculty of Medicine at UNSW, Australia. Her research examines the relationships between public health and social and political change. She has published in the fields of sociology of health and medicine, social research, cultural studies and qualitative research methods, and her current research projects examine the routinisation of obstetric ultrasound, the public health framing of pandemic influenza and the politics of global HIV prevention. Emily Waller is a Research Associate in the School of Public Health and Community Medicine in the Faculty of Medicine and a doctoral candidate in the School of Social Sciences in the Faculty of Arts and Social Sciences at UNSW, Australia. She has a multidisciplinary research background that has focused on exploring the interface between public health, security, and human rights. Mark DM Davis is Senior Lecturer in the School of Political and Social Inquiry, Monash University and has a background in the sociology of public health. Mark’s current research addresses the intersections of pandemic diseases and biomedical technologies. His publications include Sex, technology and Public Health (Palgrave), HIV treatment and prevention technologies in international context (Palgrave), edited with Corinne Squire and Disclosure in Health and Illness (Routledge), edited with Lenore Manderson.
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HEA18510.1177/1363459313516135HealthLohm et al.
Article
Biography, pandemic time and risk: Pregnant women reflecting on their experiences of the 2009 influenza pandemic
Health 2014, Vol. 18(5) 493–508 © The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1363459313516135 hea.sagepub.com
Davina Lohm
Monash University, Australia
Paul Flowers
Glasgow Caledonian University, UK
Niamh Stephenson and Emily Waller The University of New South Wales (UNSW), Australia
Mark DM Davis
Monash University, Australia
Abstract During the 2009 H1N1 pandemic, it was identified that women in the third trimester of pregnancy were particularly at risk of serious respiratory distress. At-risk women were advised to seek vaccination, avoid contact with anyone unwell, maintain hygiene routines and stop smoking. We examine this situation of emergent and intense risk produced at the intersection of individual biography and the historical event of a public health emergency. We examine how pregnant women took account of risk, how they negotiated incomplete and at times contradictory advice and shaped courses of action that assisted them to manage the emerging terrain of pandemic threat. Public health risk management advice was endorsed, although choosing vaccination was fraught. Social distancing, too, was seen as a valuable risk moderation strategy. However, time, and specifically the intersection of individual pregnancy timelines with the pandemic’s timeline, was also seen as an important risk management resource. The implications of this mix of sanctioned and temporal risk management practices are discussed. Keywords health policy, illness behaviour, risk and health Corresponding author: Davina Lohm, Monash University, Wellington Road, Clayton, Melbourne, VIC 3800, Australia. Email: [email protected]
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Introduction This article examines the circumstances for some pregnant women who faced the threat of a novel pandemic influenza virus in 2009. During the pandemic, it was identified that pregnant women were at high risk of morbidity, mortality and negative outcomes for their foetus (Dolan et al., 2012; Pasternak et al., 2012; Pierce et al., 2011), especially those in their second or third trimester (Government of Western Australia Department of Health, 2009: 1). Unlike others at risk (older members of the public, those with respiratory conditions or compromised immune systems and Aboriginal and Torres Strait Islanders in Australia), pregnant women were expected to protect not only themselves but also their unborn children. Individual biography – reaching a particular point in pregnancy – combined with the historical advent of a global pandemic influenza emergency produced emergent ‘at-risk’ subjects with many implications for the women concerned, their families and for public policy. In this article, we examine how women negotiated this situation for themselves in two national contexts: Australia and Scotland. We document their experiences of finding themselves at risk and the courses of action they took. We give emphasis to the ways in which the women negotiated emerging public health advice and articulated it with their own individual circumstances. Drawing on theories of risk, we consider implications of emergent risk identities and situated risk management for global and national efforts to moderate the impact of pandemic influenza and related respiratory pathogens.
Background In April 2009, the Mexican Government reported to the World Health Organization (WHO) that they had detected increased numbers of people with influenza symptoms requiring hospitalisation (Briand et al., 2011: 249). On 24 April, the WHO issued its first public response (Maloney, 2009: 1591) leading to worldwide efforts to, at first, contain and then moderate the impact of the pandemic. In Australia, the number of confirmed H1N1 cases peaked in mid-July and a vaccine became available on 30 September 2009 (Bishop et al., 2009: 2592). In the United Kingdom, the estimated peaks of the pandemic were mid-July and mid-October (Donaldson et al., 2009: 3), and on October 21, a vaccine became available in Scotland (Scottish Government, 2009). In early 2010, one Australian State launched a new seasonal influenza immunisation programme for children and then quickly suspended it due to an increased rate of febrile convulsions in young children (Armstrong et al., 2011; Department of Health and Ageing, n.d.). Before 2009, planning for influenza pandemics had been undertaken by the WHO in collaboration with national governments (Department of Health and Ageing, 2011; Health Protection Agency (HPA), 2006; WHO, 2007). Between 1 June and 31 August 2009, 66 pregnant women in New Zealand and Australia were admitted with H1N1 to hospital intensive care units, representing 9.1 per cent of those admitted (pregnant women are only 1% of the general population) (The ANZIC Influenza Investigators, 2009). In Australia, up to November 2009, 32 per cent of women aged between 15 and 44 years hospitalised with H1N1 were pregnant (Chief Medical Officer – Department of Health and Ageing, 2009). By 31 July 2009, the WHO and other governments had
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declared that women in their second and third trimester of pregnancy were particularly at risk of complications associated with H1N1 infection, including pneumonia, difficulty breathing and dehydration (NHS, 2011). The H1N1 pandemic, therefore, brought heightened risk – including influenza’s uncertainties and tensions to do with how best to guide clinical intervention – into the lives of some pregnant women. Influenza is a familiar and ubiquitous health threat, yet the virus regularly confronts the world with novel risks. Each year, worldwide, there are about three to five million cases of severe illness and about 250,000 to 500,000 deaths due to influenza (WHO, 2009). Influenza is produced by a family of orthomyxoviridae viruses that mutate over time through processes of antigenic drift and shift (Centres for Disease Control and Prevention (CDC), 2005; Neuman et al., 2009). Shift is more troublesome than drift as a new virus may enter a population that lacks sufficient immunological resistance (CDC, 2005; Neuman et al., 2009). Typically, public health systems become aware of a new virus strain after it has spread into a population, making it difficult to assess the level of threat that a particular outbreak will pose before public health interventions begin (Williams, 2008: 77). In 2009, policymakers and public health experts were faced with just this dilemma. When influenza-related deaths were detected in Mexico and the virus itself was detected in the United States, global and national health systems commenced their pandemic control interventions, including advising the public to adopt hygiene practices, avoid crowds, maintain good health habits and seek vaccination when it became available (WHO, 2010). As early as 1 month after the outbreak of the pandemic in the United States, it became evident that pregnant women were particularly at risk (Siston et al., 2010: 1518). Managing a pandemic after it has emerged is equally fraught. For example, the WHO regards the use of vaccines and antiviral drugs as vital tools, both to attenuate spread of pandemic influenza and to protect the health of individuals, particularly those with respiratory or immunological vulnerabilities (Hagan et al., 2008). However, concern over the safety of vaccines and drugs can lead to debate and public rejection. Such concerns were raised over the safety of the newly developed H1N1 vaccine for pregnant women. Pregnant women are typically encouraged to refrain from the use of certain drugs and vaccines as they are contraindicated in pregnancy (Lynch et al., 2012: 1658). In the H1N1 pandemic, however, the CDC (2009) and Australian National Centre for Immunisation Research and Surveillance (2010) encouraged pregnant women to be vaccinated. In the United Kingdom, public health systems produced posters and leaflets directly targeting women attending antenatal clinics. According to Lynch et al. (2012), pregnant women in the United States made vaccination decisions by balancing their concerns about possible negative effects of H1N1 vaccine against the potential protection it provided. Sim et al. (2011) in their research of 10 pregnant women in Scotland noted that women found the decision regarding whether or not to vaccinate to be harrowing, leaving them to choose ‘the “least worst” option in the context of a difficult set of choices’ (p. 509). Since 2009, research findings have emerged that may have allayed some of the women’s fears. For example, Oppermann et al. (2012) and Heikkinen et al. (2012) found no increase in spontaneous abortion, major malformation, prematurity or intrauterine growth retardation in H1N1 vaccinated women they studied compared to a control group.
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The eruption of pandemic influenza risk in women’s lives also accentuated the existing cultural expectations with regard to responsibility and good motherhood (Rapp, 2000: 86, 87) as they navigated the risks and imperatives that pertain to pregnancy itself. For most women in Australia and the United Kingdom, pregnancy is medicalised, requiring constant monitoring to avert complications (Barker, 1998; Katz Rothman, 2007: xxii, 1985). Such is the expectation of good motherhood that women are expected to eliminate all risk, and even to impose a ‘small or theoretical risk’ to the foetus for the benefit of the pregnant mother has become ‘anathema’ (Lyerly et al., 2009: 40). Women are required to seek out and comply with specialist medical advice, leading to the diminution of women’s confidence to independently manage their own pregnancy (Barker, 1998; Purdy, 2006; Weigers, 2003). Pregnant women are regularly exhorted to police their bodies (Lupton, 1999: 64), such as by avoiding smoking and alcohol consumption (Phelan, 2001: 1). Women who do not abide by such advice can be regarded as ‘ignorant, lazy (or) undisciplined’ (Bessett, 2010: 370) and have become the focus of studies designed to understand and thus reduce these behaviours (Graham et al., 2010; Morojele et al., 2010). Such is the burden of responsibility that at times women are regarded as being solely responsible for the health of the foetus (Ivry, 2007: 251) despite the many other factors that can impact upon foetal health (Harper and Rail, 2012: 69). Women are said to be doubly at risk (Lupton, 1999: 63): the health of their unborn child is medically monitored and provides the rationality for self-discipline, and their own healthy conduct is in question. This ramified self-surveillance is deeply individualising (Foucault, 1988), forcing women into contemplation of their own ‘good motherhood’. For women in our research, individualisation poses questions of the self-managed biography, including pregnancy, and what resources the mothers call on (and how effectively) to carry out their responsibility to secure their health and that of their progeny. Such individualisation nevertheless provides the means for governing subjects as moral agents and is, therefore, often articulated with the gendering of social practices and other normative forces (Adkins, 2002), including expectations of good motherhood (Rapp, 2000: 86, 87). Risk-related individualisation is also forensic in the sense that the apportionment of blame often follows a rationality of deciding individual responsibility for harms to self and others (Douglas, 1992). It follows, then, that for women doubly charged with caring for themselves and their unborn child, processes of individualisation are intense and complex. Within this article, therefore, we explore risk subjectivity in connection with expectations of good motherhood, in order to shed light on how women experienced the advent of pandemic influenza risk in their lives and to identify what risk management resources women employed to manage risk and shed light on subjectivity in our era of emerging infectious diseases.
Methods In late 2011 and early 2012, five interviewers based in Sydney, Melbourne and Glasgow conducted in-depth individual, paired and focus group interviews with 116 respondents to discuss their experiences of influenza and the H1N1 pandemic. We recruited participants in Australia and Scotland to ensure that we addressed the global qualities of the
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2009 pandemic in our exploratory, theory-building research. There are broad similarities across the Scottish and Australian health systems since national insurance bodies (the National Health Service (NHS) and Medicare) fund basic health care, although the levels at which this is augmented by private health insurance do vary. In addition, the global response to the pandemic meant that UK public health authorities were in contact with Australian authorities, at times on a daily basis. Analytically, the Glasgow interviews helped reveal what was particular to the Australian situation where the declaration of a global pandemic coincided with the Southern hemisphere influenza season, along with commonalities in people’s experiences across the two countries. Participants were recruited through posting flyers, direct contacting of organisations (>50), and snowball recruitment among the general public, supplemented by purposive sampling through the personal networks of the research team to reach specific sample groups (e.g. young men). Ethical approval was obtained from Monash University Human Research Ethics Committee. Written consent was obtained from participants. Four purposive criteria were utilised to select respondents: women who were pregnant in 2009 or 2010, older members of the community (71+ years), people with compromised immune systems or chronic respiratory illness and people who self-identified as being healthy. These criteria were led by epidemiological literature on pandemic and seasonal influenza. Of the 116 respondents, 70 were women and 14 were pregnant at the time of the pandemic in 2009/2010. These interviews and focus groups were richly nuanced. However, the accounts of the pregnant women stood out as they highlighted the stresses created when these women became cast as ‘at risk’ in a novel way at such a significant and vulnerable time in their lives. Three of the pregnant women lived in Sydney, five lived in Melbourne and six lived in Glasgow. Due to the voluntaristic method of recruitment, these women were from middle-class backgrounds: 12 had a British/ European backgrounds, 1 had an Asian background and 1 a Black African background. All were between 20 and 40 years of age. The pregnant women’s accounts were generated through one to one interviews and a focus group that permitted them to reflect on their own experiences in some detail and allowed the interviewee and interviewer to explore and negotiate meanings in considerable depth. Through team consultation, a semi-structured topic guide was designed and used to guide discussions in all interviews. Initially, respondents were asked to speak about their own backgrounds, then their experiences with influenza and finally about public communications and the public health response to pandemic influenza. These questions obtained key information, but were also open-ended to provide respondents the opportunity to tell their own stories, to elaborate upon factors that were of particular significance to them and to provide interviewers the opportunity to ask follow-up questions to seek clarification or more detailed information. Respondents were allocated pseudonyms, and any identifying details were altered to ensure confidentiality. All interviews were audio-taped and transcribed. All interviews took place after the debates in Australia with regard to the potential side effects of the Panvax H1N1 vaccine. Data analysis was a multistage, team activity. First, primary thematic areas were identified in all the data and coded using NVIVO (e.g. people managing influenza, vaccine, vulnerability) in both Sydney and Melbourne (the Scottish interviews were coded in Melbourne). A period of piloting and double-coding was undertaken to ensure
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consistency between the Melbourne and Sydney coders. Regular email and telephone communication was maintained to discuss the progress of the coding and review and to refine the codes. Second, thematic categories were further analysed into a suite of interrelated and inductively derived child nodes (e.g. responsibility, social norms). Later, all the transcripts and NVIVO files of the pregnant women were again examined by the senior author to note the specificities of their responses to the pandemic.
Responding to emergent risk The accounts provided by the women exhibit self-surveillance. These pregnant women provided reasoned explanations of why they acted as they did, even if such action differed from public health advice and what they believed other pregnant women were doing. Importantly, the women considered how pandemic influenza guidelines applied to their lives and designed strategies that they felt best suited their situation, often combining, refashioning and negotiating advice on how to act. As we will show, however, while the women considered options and came to reasoned decisions, the information they drew on was often incomplete (as scientific knowledge developed through the progression of the pandemic) and contested (as health practitioners offered conflicting advice). Furthermore, the women were aware of these provisions on knowledge, intensifying the negotiated quality of their risk management practices. The respondents reported that they had been surprised to find that they were at particular risk of pandemic influenza. Helen, who was in her 20s and lived in a rural area near Glasgow with her children, uses the term shocked to explain her experience of being thrust into the forefront of pandemic alarm: I suppose it was kind of a shock. In fact, it was a kind of shock to me because I was more used to be getting out of things because I was pregnant rather than getting involved with things, you know. Like work: I didn’t need to do deliveries. I didn’t need to give blood anymore. I was getting out of things because I was pregnant and, suddenly, this was something that, had I not been pregnant, it would’ve just washed over the top of me. So I suppose it was a bit of a shock that suddenly this was meaning that I had to think about something. (Glasgow)
Sarah also remarked on how the pandemic suddenly became a personal concern when she heard about the plight of another pregnant woman: I probably saw it on the news, read it in the papers, heard it on the radio, it kind of felt everywhere. I think as well, I don’t know if you were aware but there was a lady who was pregnant in [name of hospital] who was really ill. You know she was on that machine for breathing and I think that was definitely on the local news every night for weeks, you know, and so that was just like, ‘Oh my God, that could be me!’ So I think that really struck a chord, because she was pregnant and she was really ill. (Glasgow)
Helen and Sarah indicate that the simultaneity of pregnancy and pandemic propelled them into a new and unknown space of ‘hyper-risk motherhood’. This emergent risk raised questions of health for both self and the unborn baby. Rebecca, who lived in Glasgow with her husband and children, made this comment:
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Well, (sigh) when you’re pregnant everything just becomes about the baby. Everything you eat, everything you do, how much sleep you get, everything is for your baby. You just want to try and make your baby as healthy as possible and you want to try and keep your baby safe. So I just kept thinking, ‘If I get unwell, if something happens to me, if I get really ill, then that’s going to effect the baby and the baby is going to end up ill or worse?’ And I just couldn’t you know. You just feel completely responsible. You just feel like your whole everything: your whole life is for the baby. (Glasgow)
According to Rebecca’s account, conferred responsibility for the unborn child was takenfor-granted (Bessett, 2010: 373). Interviewees spoke of emotional stress given their fear of the unknown effects of the new, and potentially severe, infection and its vaccine. Such accounts contrast with many of our other interviews and focus groups, where informants were voluble, but not overly concerned regarding their risk of pandemic influenza.
Biomedical risk management As might be expected, in general, the women’s talk and perspectives are informed by biomedical knowledge and advice. However, when examined at the individual level, there is a spectrum of responses that exhibit (a) some dissonance between women’s risk management and expert advice and (b) tensions and varied interpretation of public health messages by people in the health workforce assisting pregnant women. Such dissonance and tension are consistent with the risk society thesis (Beck, 2011), where expert advice is often uncertain and contradictory, foregrounding the challenges of establishing relations with expert knowledge. Marilyn, for example, was vaccinated despite being unconcerned about the risk of H1N1. She presents herself as a compliant, health citizen, conforming to her physician’s recommendation and presenting a rather docile subject of biomedical regulation: I also heard it through my doctor, going to the doctors. She also suggested that I get the swine flu (immunisation), being pregnant. I went and did it. (Melbourne)
Marilyn does not mention an awareness of alternative perspectives concerning the merits or hazards associated with vaccinations. In stark contrast, other women wrestled with such decision-making. Sarah, for example, suffered from a respiratory illness and explained her decision to be vaccinated: I was possibly overcautious in my pregnancies for fear of something happening. So that’s possibly played a part in me getting the immunization as well and being ‘more careful’, as in, not going in that room [a room where a patient had H1N1] and being so sure I wouldn’t go in that room and I would definitely get the immunization. Although I did debate it in my head for a wee bit. I think, as I was saying, my experience of working in the pharmaceutical industry, I am a great believer in medicine. So, I kind of felt they wouldn’t put something out there and tell you to go and get it done, if they didn’t know it was safe. And yet everything has got a risk. But it’s pretty minimal I’d imagine. So I suppose I do have faith, a wee bit. (Glasgow)
While Sarah noted some concern about the vaccination, she describes her decision to be vaccinated as informed by her faith in biomedicine, possibly derived from her reliance
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upon it to control her respiratory illness and her experience of working in a medical environment. It is important to note her reference to the ubiquity of risk and related use of the religious discourse on ‘faith’ and ‘believer’. Faith, apparently, is what is needed to live with the inherent risks of biotechnology, even if they are reasoned to be small. For interviewees like Sarah, there was a clear sense of having to take on the role of decisionmaker, which connoted agency but also a corresponding crisis of risk inflected with responsibility and culpability. This crisis is derived from having to take account of the dilemmas and paradoxes in expert knowledge on risk and the imposition of blame should their actions result in a negative outcome for either themselves or the foetus (Douglas, 1992: 6).
Social distancing Along with biomedical risk management, some women drew on spatial methods. Social isolation was a key public health strategy to stem the spread of H1N1. For example, a 2009 Fact Sheet stated, ‘Stay away from others if you’re sick or they’re sick’ (Australian Government, 2009). Influenza is generally thought to spread when an infected person exhales droplets that land on the eyes, nose or mouth of another: for infection to spread people must be within a metre of each other (Department of Health and Ageing, 2008: 11). H1N1 was thought to spread similarly (Sullivan et al., 2010). In interviews, however, social isolation was translated into judgements of spatial proximity to the H1N1 outbreak and crowds. Marilyn explained what she knew of H1N1: I don’t think anybody in my area knew anybody who had it. I think if it was somebody who knew somebody who had it, I think a lot of people would have gone into a panic. But otherwise, not a panic. They would have, I think, taken it more seriously. But it wasn’t close enough to home for people, for my friends anyway, to be too concerned. (Melbourne)
Marilyn’s relaxed approach, provided by her perceived spatial distance from infection, is apparently bolstered by her account of the risk consensus among her friends. Her lack of concern can only be understood in the context of her relatively isolated place of residence (Tulloch and Lupton, 2003: 8). H1N1, while very present in Melbourne, was deemed ‘remote’ from her urban-fringe home, providing a form of cordon sanitaire between her and contaminated people (Waldby et al., 1993). Marilyn was not alone as other respondents, who were not pregnant, made similar comments. Knowing no one who had the virus provided an impression of safety. However, a person who has influenza can spread the virus prior to the onset of symptoms and/or be asymptomatic (WHO Collaborating Centre for Reference and Research on Influenza, n.d.). Since contact with pre-symptomatic infected people remained a possibility, strategies of limited social isolation may not have eliminated all risk. Also, given that it was April 2009 when H1N1 was first identified in Mexico and in the United States, and it is thought to have subsequently arrived in Scotland on 27 April 2009 (McLeish et al., 2011) and Australia on 9 May 2009 (Kelly et al., 2011), it would appear that, while distance provided Marilyn with an illusion of safety, it could not be deemed absolute.
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In contrast, some interviewees were mobilised into action because of their perceived proximity to the pandemic. When the H1N1 pandemic actually broke out in her neighbourhood, Gills’ response was immediate: Gill: Well given that the first case in Australia broke out at [school] and my son, my son was three and he was at [childcare centre], I pulled him out. So when my husband picked him up that day I was at work, I said, ‘Take him home. Give him a bath. Wash his clothes’. I stopped sending him and I was one week off my maternity leave so I stopped work a week early. I didn’t go to the supermarket, didn’t really mix. Interviewer: So really reduced your contact with people? Gill: Very much so, yes. Interviewer: How did you manage to cope with that in terms of I s’pose the practicalities of life? Gill: Well, I got groceries delivered online. We went out but to places like the Botanic Gardens and just tried to avoid shopping centres and movie theatres and play groups. And, we did see family, but I did ask them to wash their hands when they came in and stuff. (Melbourne) Gill depicted her actions as prompt and decisive. There was no time to deliberate. Instructions to her husband left no room for error: they were clear and direct as she took command of the situation. Her faith in her actions to protect her family was uncontested as she systematically put into place expert guidelines for reducing infection. As no vaccine was available at this time, her need to quarantine her family was paramount. Jan felt similarly concerned when cases of H1N1 began to occur in close proximity to her inner city home: Jan: But it was really frightening because we were in the inner city so we were right near [suburb] where the first kind of local case hit. That was really confronting at the time. Interviewer: It was close. Jan: It was really close and it felt close, and I was, actually, at the time, felt like, I mean, I feel like ridiculous saying this now, but I felt like I wondered whether we should go far away somewhere remote and stay in a house until it had passed, because I was that fearful, of what the implications would be. (Melbourne) Besieged by the influenza outbreak, Jan contemplated escaping to a safe, isolated haven to protect her family. While noting that such an idea may seem ‘ridiculous’, Jan’s account emphasises just how her fear of H1N1 was heightened by its proximity and the lack of a spatial cordon sanitaire to provide a semblance of protection.
Time and risk management While orthodox biomedical and social isolation risk management strategies were employed by interviewees, time was also seen as a risk resource. The temporal
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management of risk is common in, for example, chronic diseases, where patients and practitioners monitor clinical progress over time or at important biographical milestones. The temporal management of risk was explicit in the phases used to manage pandemic influenza and in the sense that efforts to assess and manage influenza risk are predicated on future amelioration. The interviewees, however, regarded time, or more properly the timing of their action, as an important resource for them and their unborn babies. Not only was it seen that biomedical knowledge and expertise developed along chronological lines (the cumulative understanding of the specifics of H1N1), for some women, a core part of risk management related to having expectations of the unfurling of expertise within pandemic time, their own pregnancy timeline, and the intersections of these. In this way, some of the dilemmas associated with the risks of vaccination, in particular, could be, apparently, avoided. Maude, for example, lived in a rural area on the outskirts of Glasgow with her husband and children, and explained the dilemma she faced when she found she was pregnant in early 2010. She talks of anticipating changing knowledge of the side effects of the vaccine as the basis for making a decision: I thought, ‘Well there was obviously a lot of babies who now have been born and have had this’ and maybe I think part of my waiting until the third trimester was also that more babies would have had it, whose mums would’ve been given the vaccine when they were in the later stages of pregnancy, so maybe there was more evidence to say, ‘Yes these babies are all fine, but they were all … you know they all had the vaccine later in the pregnancy rather than early in the pregnancy’. So I think that’s maybe why if I was going to have it later. And if they’d said, ‘You must have this’ I think I would’ve still pushed to say, ‘Not until I get to the third trimester’. (Glasgow)
Maude indicates that one way of moderating the risks to herself and her baby was to delay vaccination until evidence emerged regarding its safety. This engagement with risk such that ‘the illnesses of some should be transformed into the experience of others’ (Foucault, 1976: 84) is a common strategy. Maude, however, is not necessarily simply a risk-calculating subject. Since all side effects are strictly unknown in a new vaccine – at the time when she was making her decision – Maude had to bear responsibility for the vaccination decision. Maude’s response is not unexpected given that pregnant women are generally reluctant to have any vaccine in pregnancy, even if they are generally supportive of vaccination (Patten et al., 2006: 351). This situation is particularly acute since so much responsibility is now loaded upon the pregnant mother (Lupton, 1999: 67). Maude’s management of the temporal unfolding of knowledge was, therefore, a means of managing the dilemmas and imperatives that come with risk-infused decisions. Indeed, Maude speaks of abdicating final responsibility to the expertise and opinion of her physician: I thought, ‘If I don’t think about this, if no one asks me, ‘Have I had it,’ then it’s obviously not that important and they don’t think I need to have it. And, I don’t have to make that decision whether to have it or not. Or, if I was consciously like, I don’t really want to have it and I don’t think I did really want to have it, but if they tell me, if someone tells me I really should, and if a health professional is telling me that I really need to have it, then I’ll have it. (Glasgow)
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Maude reported that, in the end, she did not have the H1N1 vaccine as the baby was born before the next influenza season. Her story suggests the exploitation of biographical and pandemic time to navigate her situation. Implied here, too, is also trust that sound knowledge will, given time, emerge. Maude is therefore critically engaged with risk and medical expertise in a way that ultimately serves to appropriate (not reject) it, but according to matters of personal biography and its intersections with the pandemic timeline. Jan, who suffers from respiratory illness, was also pregnant in 2009. Despite being regularly vaccinated against seasonal influenza, she chose not to be vaccinated against H1N1 due to her concerns about the safety of the new vaccine. Her decision was based upon her physician’s advice, which supported her own research on the unfolding of expertise over time. Jan explained, And her [Jan’s doctor’s] advice was, in spite of all of these stories about pregnant women in their third trimester getting Swine Flu and being in like threatening, critical situations, she felt that the risk of, associated with a new vaccination would outweigh the potential risk of actually having the vaccination. So she advised me to not do it and to wait until the next round of flu injections when they would be more refined and they would know more about the virus itself, and to just ride it out. (Melbourne)
Jan’s account gives the impression of critical engagement with risk and close cooperation with her physician. Time is here referenced in the form of advice from the medical practitioner to wait for vaccination. Like Maude, the doctor also utilised time as a resource to determine the safety of the new vaccine. Of note is that despite their rigorous consideration of the merits of vaccination, these women finally abdicate responsibility to their doctor. The advice given by Maude’s and Jan’s doctors differed from that given by Marilyn’s, highlighting disparity in medical advice and therefore uncertainty. These engagements with risk and time resonate with Luhmann’s (1993) notion that ‘the more we know, the better we know what we don’t know, and the more elaborate our risk awareness becomes’ (p. 28).
Conclusion When the H1N1 pandemic emerged in 2009, our interviewees were forced to make decisions with potentially life changing ramifications for their unborn babies and for their own health. They shaped their responses according to their particular pregnancy timeline, social situation and cultural expectations regarding motherhood. Each was forced to evaluate their own situation, weigh up options and make decisions. Some women chose to isolate themselves, some chose to be vaccinated, some rejected vaccination, while, for others, the pandemic passed with little impact on their lives. As noted, cultural expectations of good motherhood place women in the situation of caring for the health of their foetus and of their own bodies: a doubling of health responsibilities. Women with pre-existing health conditions could be said to face a tripling of such health risks. The advent of the H1N1 pandemic worked in a similar way to complicate the pregnancies of those women we interviewed, even if only indirectly and through heightened awareness of the hazard that an influenza infection might bring them and
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their unborn babies. The women’s pregnancies were closely monitored by medical practitioners highlighting the potential risks associated with pregnancy and the pandemic and hence the importance of self-surveillance and acquiescence to all guidance to preserve the highest chances of a positive birth outcome. This was one of the least remarked effects of the 2009 pandemic that it sharpened expectations of good motherhood for some women. It is known that disease outbreaks are rarely egalitarian. Some are more affected than others and some take on roles in the social responses to health emergencies, which others do not. Our analysis shows that for some women at a particular point in their pregnancy, the 2009 pandemic pitched them into close focus on their health and that of the foetus. Expectations of good motherhood and pandemic risk therefore interact, a dynamic that draws attention to gender and the social responses to pandemics. In time of a public health emergency, women appear to be called on to act in ways that are particular to their gender and biographical moment, an effect that is likely to characterise future social responses to pandemics and other emerging infectious diseases. One important effect of the collision of pregnancy timelines with the H1N1 pandemic was that the women found themselves newly at risk, to be special subjects of the efforts to manage the pandemic. This new found status had emotional repercussions. Given that motherhood is loaded as it is with expectations of safeguarding health of mother and baby, the pandemic intensified and focussed the women on themselves and their pregnancy in new ways. Our interviewees endorsed and modified orthodox public health advice with regard to the management of risk for pandemic influenza. Biomedical methods of risk management such as vaccination and social distancing were considered and exploited wherever possible. These women were highly engaged and intensely aware of their responsibilities as mothers and exploited these risk management approaches, a stance that is explained by cultural expectations on women to perform the role of carer for themselves and the foetus. Yet, this was not always easy. Some had trouble reconciling the advice to accept a rapidly developed new vaccine with general advice to avoid many vaccinations and medications during pregnancy. Responsibility for the foetus and the advent of the pandemic thrust women into an escalation of risk awareness and culpability in an unclear and rapidly changing terrain. Of most significance in the accounts provided by our interviews was time and, in particular, the intersection of their own pregnancy timeline with that of the pandemic. Our interviewees spoke of assessing their own risk in light of their own stage of pregnancy. Others made note of managing the uncertainties of the pandemic and the methods used to manage it by delaying, for example, vaccination until such time as more was known. These accounts suggested that the heightened risk awareness of these women was imbued with temporalised understandings of risk and uncertainty, effects that may be associated with the way in which pregnancy itself is strongly inflected with time, but that also echoes the logic of a pandemic as a temporally bounded event. Time is important to the management of both seasonal and pandemic influenza. The first outbreaks of a novel virus are closely monitored so that governments around the world have time to develop effective vaccines. Significantly then this temporalised logic of risk management has entered into the life spaces of members of the general public as indicated in the accounts of the women we interviewed.
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The arrival of new influenza virus for which populations lack immunity can quickly thrust people into positions of risk with few reliable tools with which to curtail their vulnerability. In the case of the 2009 pandemic, pregnant women devised innovative strategies in an attempt to manage the risks of infection. As women they were accountable for the decisions they made to enable them to carry their unborn child safely through the period of intense risk. The role of motherhood is intensely imbued with responsibility – a responsibility keenly appreciated by the women. Acknowledgements We thank Casimir Macgregor for assisting with data collection and everyone who agreed to participate in interviews and focus groups.
Funding This research was funded by an Australia Research Council Discovery Project grant (DP110101081) with additional funding from Glasgow Caledonian University.
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Author biographies Davina Lohm is a Research Assistant in the School of Political and Social Inquiry, Monash University, with a background in sociology and education. Davina is currently researching the social aspects of pandemic influenza. Paul Flowers is Professor of Sexual Health Psychology, School of Health and Life Sciences, Glasgow Caledonian University, UK. Paul’s current work includes research translation and impact studies, the use of Interpretative Phenomenological Analysis (IPA) in applied research, HIV prevention research and pandemic influenza. Niamh Stephenson is a Senior Lecturer in Social Science at the School of Public Health and Community Medicine in the Faculty of Medicine at UNSW, Australia. Her research examines the relationships between public health and social and political change. She has published in the fields of sociology of health and medicine, social research, cultural studies and qualitative research methods, and her current research projects examine the routinisation of obstetric ultrasound, the public health framing of pandemic influenza and the politics of global HIV prevention. Emily Waller is a Research Associate in the School of Public Health and Community Medicine in the Faculty of Medicine and a doctoral candidate in the School of Social Sciences in the Faculty of Arts and Social Sciences at UNSW, Australia. She has a multidisciplinary research background that has focused on exploring the interface between public health, security, and human rights. Mark DM Davis is Senior Lecturer in the School of Political and Social Inquiry, Monash University and has a background in the sociology of public health. Mark’s current research addresses the intersections of pandemic diseases and biomedical technologies. His publications include Sex, technology and Public Health (Palgrave), HIV treatment and prevention technologies in international context (Palgrave), edited with Corinne Squire and Disclosure in Health and Illness (Routledge), edited with Lenore Manderson.
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