J Med Humanit (2014) 35:111–129 DOI 10.1007/s10912-014-9278-4
Reframing Medicine’s Publics: The Local as a Public of Vaccine Refusal Heidi Y. Lawrence & Bernice L. Hausman & Clare J. Dannenberg
Published online: 30 March 2014 # Springer Science+Business Media New York 2014
Abstract Although medical and public health practitioners aim for high rates of vaccination, parent vaccination concerns confound doctors and complicate doctor-patient interactions. Medical and public health researchers have studied and attempted to counter antivaccination sentiments, but recommended approaches to dispel vaccination concerns have failed to produce long-lasting effects. We use observations made during a small study in a rural area in a southeastern state to demonstrate how a shift away from analyzing vaccination skepticism as a national issue with a global remedy reveals the nuances in vaccination sentiments based on locality. Instead of seeing antivaccinationists as a distinct public based on statistical commonalities, we argue that examining vaccination beliefs and practices at the local level offers a fuller picture of the contextualized nature of vaccination decisions within the psychosocial spaces of families. A view of vaccination that emphasizes the local public, rather than a globally conceived antivaccination public, enables medical humanists and rhetoricians to offer important considerations for improving communications about vaccinations in clinical settings. Keywords Vaccination . Publics . Local . Vernacular rhetoric . Flu A Merck (2010) brochure, Talking to Parents about Vaccination: Addressing Questions and Concerns, summarizes five main parental concerns about vaccines, including the immunization schedule and timing, ingredients, overall benefits, quantity, and safety. This brochure, produced and distributed to physicians, offers medical professionals a series of talking points, examples, and facts to counter parental vaccine concerns. Talking to Parents about Vaccination comprises an example of how aggregated studies undertaken by physicians and public health H. Y. Lawrence (*) George Mason University, Fairfax, VA, USA e-mail: [email protected]
B. L. Hausman Virginia Tech, Blacksburg, VA, USA e-mail: [email protected]
C. J. Dannenberg University of Alaska Anchorage, Anchorage, AK, USA e-mail: [email protected]
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practitioners attempt to understand why parents are concerned about vaccination and to generate rhetorical responses designed to counteract those concerns, and it mirrors more widely circulating unease regarding antivaccinationism. In the popular press, Dr. Paul Offit’s Deadly Choices: How the Antivaccine Movement Threatens Us All (2011) and journalist Seth Mnookin’s The Panic Virus (2011) criticize antivaccinationists’ belief systems and misappropriations of science, indicating that correcting these beliefs with facts is ultimately the solution to antivaccination sentiment. Medical journals such as The New England Journal of Medicine (NEJM), Vaccine, and Pediatrics routinely publish studies concerning parental hesitation to vaccinate, alongside rhetorical prescriptions for how to address (that is, correct) parents’ views on vaccination, which are frequently pegged as misguided or “flawed” (see Jacobson, Targonski, and Poland 2007; Kata 2010; Offit and Hackett 2003, 654–655). Despite such interventions, vaccine concern remains high, even among parents who comply with vaccination schedules.1 In the United States, some parents inevitably vaccinate their children because of laws, guidelines, or physician policies that demand it; others try to delay and space vaccinations according to alternate schedules; and still others refuse all vaccinations, working with alternative practitioners and/or claiming religious or philosophical exemptions to avoid vaccinating their children. As much of the literature opposing antivaccinationism indicates (Offit 2011; Mnookin 2011), this vocal minority of parents is highly effective at circulating concerns about vaccines and creating questions about vaccine safety in the minds of many parents. Although the American Academy of Pediatrics (AAP) advocates that physicians work with parents to find solutions to protect all children through vaccination, some pediatric practices have resorted to dismissing patients whose parents will not vaccinate their children according to the AAP guidelines (Kluger 2011). Try as they might to address parent concerns rhetorically by providing counter-arguments about vaccines, some physicians end up resorting to regulatory responses, asserting physician authority over the parent or simply asking the family to leave.2 As rhetoricians, we ask, quite simply, how might the situation be ameliorated? The answer lies in shifting the unit of analysis in the study of vaccination practice away from medical publics organized as vaccine refusers or antivaccinationists and instead turning toward local publics to see how community attitudes and values influence vaccination as a situated family decision. By analyzing existing research in medicine and public health according to a rhetoric of publics, in the sense of Gerard Hauser’s (1999) “plurality of publics located in multiple arenas of a reticulate public sphere in which strangers develop and express public opinions by engaging one another in vernacular rhetoric” (12, emphases original), we can see how traditional attempts to typologize vaccination sentiment emerge from a misappropriation of the medical public they are addressing. For example, the existing research impulse has been to categorize people with concerns about vaccinations as one medical public with national reach and historical roots reflecting the earliest counter-arguments to vaccination that emerged in the nineteenth century. In Deadly Choices, for example, Offit (2011) conducts an extensive comparison between modern and past antivaccinationist groups in an effort to historicize and contextualize the antivaccine position. This research trend has been rich, helpful, and insightful, but it has not stopped vaccine refusal, nor has it made parents more confident about vaccines. Medical humanists and rhetoricians are poised to approach the situation differently through methods of research and analysis that attend to the needs of local publics and examine the particular contexts of family decision making. In this article, we investigate what we call global and local approaches to antivaccination sentiments and publics. Extrapolating from a study of two small, rural communities in a southeastern state following a state-sponsored flu vaccination program, we argue that to
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automatically link antivaccination views with national or global trends loses sight of the immediate contexts (e.g., individuals, families, and other networked communities) in which vaccination decisions are made. In our study, we found that attempts to understand vaccine concerns within national frameworks of antivaccinationist discourse distort the rhetorical situations in which vaccination decisions are made. Our research could help both physicians and parents understand the situated perspectives they bring to the clinical encounter in hopes of restoring a sense of reasoned deliberation and common ground to vaccination discussions in the examination room. We build on existing research in social science (Blume 2006; Hobson-West 2007) that argues that medical research contributes to mischaracterizations of vaccine concerns by typologizing antivaccinationists according to data that do not always apply across diverse populations. We then focus on how the notion of local publics can elucidate more helpful findings for medical and public health practitioners as they respond to vaccination concerns in different communities. Studies incorporating the particular as a positive attribute, rather than a problem that renders findings unusable, contribute to improved understanding of the cultural contexts of and motivations for vaccine refusal. We focus on publics and locality as related lenses for analyzing decision making about health and vaccination practice in communities. To illustrate the effectiveness that appreciation of the local could offer to existing research, we offer examples from our interview study that show parents using a personalized rhetoric of family decision making, health, and the immune system as they describe their vaccination decisions. Focusing on local meanings that permeate our data demonstrates how useful a small study can be in building public health knowledge. Ultimately, the use of a personalized rhetoric in vaccine refusal is a mechanism to assert the uniqueness of the self and family in the face of generalizing tendencies in public health practice. The local is a context in which personalized rhetorics appear not only because it is the site of family decisions but also because the local symbolizes elements of individual identity that are asserted in opposition to public health as a practice targeting a mass audience rather than specific persons. Thus, local articulations of personal rhetorics of vaccine refusal emphasize the individual within the family as particular, rather than in the generalizable context of the community imagined by public health. In this way we hope to develop enhanced approaches to the public of public health because such a category is obviously an aggregate of publics that is internally inconsistent. Reframing medicine’s publics opens new possibilities for medical humanists, rhetoricians, sociolinguists, and other humanistic researchers in health and medicine to work with clinicians and policymakers to create a new, more open dialogue about vaccines. In this article, we use two terms to reflect different, though interconnecting, configurations of public discourse that questions the value of vaccinations. We refer to antivaccinationists as one public of vaccine concern made up chiefly of parents who, within a paradigm of publics theory, coalesce around discourses about the safety and ethics of vaccines and actively work to subvert vaccine mandates. We describe a more generalized public concern about the safety or efficacy of vaccination as vaccine hesitancy; discourses of vaccine hesitancy express discomfort about vaccines or question their necessity or timing but are not used to refute vaccination as a practice or subvert vaccine policies or mandates. Although publics who coalesce around discourses of vaccine hesitancy may still refuse some vaccinations (in the case of our study, the flu vaccine) or borrow discourses also produced by antivaccinationist publics, these publics gather around other sets of discourses reflective of issues relevant to social and political relations in a local community.
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Vernacular rhetorics and local publics Research in social science has examined how trends in public health and medical research can over-generalize vaccine concerns across populations and lead to problematic constructions of “antivaccinators.”3 Stuart Blume (2006), for example, makes a number of observations about social expressions of vaccine concerns that make the lens of publics theory particularly useful for examining how discourses operate among the vaccine hesitant. Blume argues that antivaccinationists do not function as a distinct group. Instead, he suggests, concerns about vaccinations emerge from other social perspectives, objectives, and phenomena. “Antivaccinationism,” as a set of beliefs, does not necessarily cohere as a distinct social movement because other discourses about healthy living, parental autonomy, health consumer behavior, and the “informed parent” identity are linked to and are used by individuals when expressing vaccine concern (638). Blume posits that antivaccination groups could be “lumped in” with other social movements, in cases where antivaccination sentiment is constitutive of more salient social movements or identities, and he concludes that antivaccination could be an expression of “scientific citizenship” that values and encourages deliberation and contestation of scientific matters. Most significant to our purposes, Blume (2006) argues that public health efforts to disprove the perceived flawed reasoning that leads to vaccine hesitancy also fail to persuade the public because they are “sociologically inadequate” insofar as “a sociological analysis must see both sides as mutually engaged in a process of contestation, in which the reflexive analysis of (shared) experience, differences in the assessment of risk, and the place of expertise in decision making are all at stake” (640). Publics theory facilitates the kind of nuanced understanding of antivaccinationism that Blume suggests because it encourages examination of discourses-inaction to understand their vernacular rhetorical function and real operation among those who coalesce through language use. Publics theory Publics theory makes a series of interrelated arguments about the operation of publics and their discourses that are important to understanding contemporary vaccine controversy. Jürgen Habermas (1991), Michael Warner (2002), and Gerard Hauser (1999) maintain that the notion of one single public or a generalized public opinion is misleading. Habermas, for example, calls the idea of one unified public opinion in a democracy an “institutionalized fiction,” which functions for the “legitimation of political domination” (237). Democracies and democratic processes rely on the notion of consensus as a basis for the operation and leadership of governments, their policies, and constitutive politics, but Habermas, Warner, and Hauser argue that this consensus cannot be achieved or interpreted as singular or generalizable across a population. Instead, they argue that publics, not the public, organize themselves across society through discourse and, as a result, are not unified. Although each theorist argues for different perspectives on how these publics form, how they organize, and their rhetorical functions, this notion of the fractured public is significant to understanding public opinions, particularly as they relate to the issue of vaccination. For the purposes of our analysis, we rely chiefly on Hauser’s model as a means for conceptualizing how publics form to make opinions and judgments. For Hauser (1999), a public is “the interdependent members of society who hold different opinions about a mutual problem and who seek to influence its resolution through discourse” (32). The analogy Warner (2005) provides for this process of public formation is “run it up the flagpole and see who salutes” (114). In this analogy, discourse circulates within the public
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sphere among the individuals who respond to it, and the resulting body of responsive individuals constitutes the public for the discourse represented in a given text. Hauser completes this metaphor by further emphasizing that publics form through eventful production of discourse: “individuals who are actively weighing and shaping the course of society . . . emerge as a public only insofar as they are able to create the shared space between them for talk that leads to what Arendt (1958) calls their common sense of reality” (74–75, emphasis original). Rather than simply coalescing in a collective responsive act, as Warner’s saluting metaphor suggests, according to Hauser, publics do more than aggregate around discourses. In his model, the discourses emerge as a manifestation of a public’s shared understanding of particular issues, as the means for interpreting the world and making decisions about it, and as the practical values and judgments shared by members of the public. For Hauser, this “common sense of reality” is reflected in what he calls the vernacular dialogue exchanged among members of the public, which he advocates analyzing through a vernacular rhetoric model. The vernacular rhetoric model uses what Hauser calls vernacular exchanges as a means for understanding publics through their discourses. The vernacular here refers to a plane of interaction in everyday iterations of culture. Vernacular rhetoric, for Hauser, is not equivalent to the linguistic term vernacular although it reflects a related concept. Vernacular rhetoric instead emerges from vernacular, or everyday, dialogues, which Hauser defines as the cultural forms (films, novels, art) as well as speech and writing that make up the discourses that reflect not just how a public thinks and speaks but how it sees the world. Vernacular discourses are dialogical in that these discursive forms signify “the shared meanings and common understandings contained in and evoked by symbolic action” among members of a public (105), and therefore “discursively constitute their participants’ common understandings of reality” (109). In this way the language a public uses to express its ideas and deliberate its opinions holds significance among the members of that public that may not be accessible by or readily apparent to nonmembers. Any analysis of this discourse, Hauser maintains, must be analyzed as it is exchanged, during a “shared activity of communication” (97) of publics during vernacular contact (i.e., during the discursive interactions between members of publics, not through the lens of institutions and authorities, as public health surveys would produce). Publics come together for the mutual purpose of forming opinions on issues and topics of relevance to them. As Hauser argues, “opinion is the result of judgment” and “there are differences between the expert opinion that offers an appraisal based on technical considerations . . . and lay opinion that addresses life’s contingencies” (93). These criteria speak to the additional conditions for publics that Hauser addresses. Publics do not form to address issues in expressly scientific or theoretical ways because the purpose of publics is not to produce that kind of knowledge. Publics function as practitioners of phronesis, or practical reasoning that “is not governed by the true/false logic of propositional statements; it is concerned with beliefs and actions that have traction on the moral and pragmatic registers of those who are being addressed and asked to judge” (94). As these “questions of ‘ought’” are debated, they are fundamentally rhetorical judgments—arguments formed, evaluated, and finally decided upon based on responses to a wide range of discourses and in the midst of competing values and even truths under consideration by a public (94). Examining vaccination controversy through the lens of Hauser’s observations, we see two significant problems with current analyses of vaccination concerns within the discourses of medicine and public health. The first problem occurs in regard to the current method of analysis of and response to vaccination concerns as expressed by patients and parents alike. If we look at public opinion as a process of practical reasoning, we can see that the kind of
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knowledge used to produce public opinion uses a different set of factors as its basis for judgment and has a different set of goals than scientific reasoning does. Hauser, echoing Aristotle, points out that “the ancient Greeks considered our ability to engage in this type of public moral discussion a virtue,” in that, in a democratic society, people could decipher practical solutions from amid a variety of truths and alternative answers to the policy questions that scientific discoveries often raise (94). This perspective appears in “The Roles of Rhetoric in the Public Understanding of Science,” wherein Alan Gross (1994) identifies two models of the public understanding of science: the deficit model and the contextual model. The deficit model assumes that the public always trusts science; a public’s response that does not adopt practices related to a scientific finding is thus perceived to be caused by a deficit in the public’s understanding of science. Gross argues that the deficit model is an inherently inadequate way of conceiving of the public uses of science because “it is a mistake to locate the problem of public understanding in public ignorance,” in part because it “isolates science from the contexts that give it public significance” (7). Educating parents about the value of vaccination as a persuasive technique relies on the deficit model as the basis for action. Gross’s contextual model, by contrast, affords “public understanding . . . genuine, not diminished, epistemological status, different in kind, but not in significance from the epistemological status conferred by the methods of science” (19). Hauser’s notion of the vernacular, informed by Gross’s contextual model, shows how vaccination decisions are made via practical reasoning, and refusal or hesitancy to vaccinate does not necessarily indicate a lack of scientific understanding. The second important concept Hauser offers, and the one that emerged as most salient in our study, concerns medicine and its publics. Although there may be an antivaccinationist public, a group of people who organize through discourse, who actively work to subvert vaccination mandates, and who share vernacular rhetorics and means of making judgments and forming opinions, other publics, to use Hauser’s phrase, “rub up” against this public. These adjacent publics absorb some, but not all, of the antivaccinationist opinions about vaccinations. Most importantly, these publics likely emerge out of distinct vernacular discourses that have entirely different rhetorical meanings within that group. As a result, the rote medical responses to vaccine concerns as recommended by documents like the Merck manual demonstrate a lack of sensitivity to the different publics from which these opinions, even those that seem identical, emerge. Theorizing the local Taking account of the local constitutes one possible solution to deciphering the discourses that appear in both antivaccinationist publics as well as related publics such as the vaccine hesitant. But what is the local and why does it matter? The local may be conceived as a kind of public composed of persons who identify as a group and with each other based on mutual proximity. Using Michael Agar’s (2005) notion of the relation between local discourse and global research, we focus on the local to examine how vaccination sentiments are expressed in publics not specifically concerned with subverting vaccine mandates. In the end, we work to reintegrate the significance of a more global perspective on local antivaccination practice, considering how local information informs research on a larger scale, as well as the opposite— how global knowledge gained through systematic analytic effort affects local issues and the outcomes of local research. As argued further below, proximity is not necessarily geographical, but place is the most common way of thinking the local as identity. Locality, in the social sciences, is a term that has proven to be scalar, multidimensional, and fluid. Locality is related to, but not necessarily confined by, geographic space and at the same
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time always integrated into the milieu of the global. As Silverstein (1998) notes, “Language communities, relativistically speaking, are ‘local’ when they are perduringly bounded through cultural means in relation to sociopolitical processes on a global scale” (403). Thus, the local is defined, at least in part, in its relationship to the global, though the local and the global do not necessarily have a readily binary relationship (see Gibson-Graham 2003). In addition, “a less obvious, less predictable, less binary relation [between local and global] must be affirmed as a truth and reaffirmed as a truism . . . for the global is not merely a geographical scale that subsumes and subordinates the local; it has become a sign as well for universality and sameness/unity” (Gibson-Graham 2003, 50–51). Locality, in sociolinguistics, is a descriptive term that may shift focus to suit the purpose of any particular study. The local is often tied to vernacularity, or nonstandard and dialectically interesting speech (Labov 1963). Local can be “other than” and distinctive in comparison to the wider norm (however that may be defined)—thus, insulated or isolated from outside contact (see the following section for the interconnectedness of locality and isolation). The local is often bounded to physical, geographical space, and the nuances of locality itself—even what simply defines one locality in relation to another—are only significant insofar as they inform the particular production or absence of diagnostic features. At the same time, however, the local may or may not be exclusive in relation to surrounding dialects. In short, local is not a discrete label—a community which may be categorized as local in one study is not necessarily defined as such in another (Montgomery 2000).4 Both sociolinguistics and the social sciences have gaps in the theoretical and practical applications of the local. Sociolinguistics has historically relied on speaker contact, physical, social, economic, psychological, cultural, and technological isolation, and speaker attitude to frame its discussion of how locality drives language change; however, there has been no working model that incorporates all of these potential factors for local identity. Social sciences have relied on similar concepts of individual relationships with community (both local and global) that have evolved into workable models (Appadurai 2000, 2002; Cox 1997; GibsonGraham 1996, 2003; Silverstein 1998; Swyngedouw 1989, 2004); however, there has been no social sciences model of local or global identity that factors synchronic language variance into the mix. Thus the local and the global are intimately and at times implicationally related in this cross-disciplinary research, and scholars have endeavored to measure the degree to which local identity fades as global (or extra-local) identity manifests itself. A working model of local identity, then, is not binary, nor is it necessarily progressive—that is, there is no uninterrupted, predictable movement from local to global. The information gathered from cross-disciplinary research suggests that a model of locality must incorporate characteristics that are bi- (or even multi-) directional and fluid with each characteristic being implicationally related to the next and the previous. Crucially, characteristics of locality are not hierarchically related. Although proximity does not always determine a public or the local, for our study, shared discourses about flu and flu vaccine among rhetors in this community reflected Hauser’s (1999) vernacular rhetoric, situated in geographic proximity in this case. The rhetoric participants used in our study reflects a local public of non-vaccinators who reject authoritative discourses about how to define and maintain health shaped by community values and the authority of health regulations. The discourses our participants produced were embedded in community relations specific to this local area and yet relatively disconnected from national concerns about flu vaccination. For instance, we approached this study expecting to either hear rationales like “I was afraid that the flu vaccine would give me the flu,” as national health studies suggest are the most common reasons for not being vaccinated (CDC 2012) or to hear general parental disengagement as the reason why parents did not return forms or have their
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children vaccinated, as indicated by our public health department contacts. Once we began interviews, however, we quickly realized that neither of these perspectives proved accurate in this community context, even though we occasionally found resonance with national discourses of vaccine hesitancy. Even within our small data set, we uncovered deeply held values about personal and family health, alternative notions of what health or illness might signify within the family unit, ideas about how to best protect the immune system, and discord concerning the flu vaccine as a preventative health measure, complicated by an uneven response to the health department. The interlocking notions of publics and locality account for the spatial relationship of discourses that connect the non-vaccinating public in the area we studied. We found that publics other than those expressly concerned with resisting compulsory vaccination are composed of situated subjects who are always responding to particular circumstances that demand both discursive and material action. Decisions about vaccination are not singular but emerge as part of a process (Hobson-West 2003, 276) within familial contexts. A rhetorical approach to analyzing vaccination hesitancy and the role of parents’ views in vaccinating children against influenza, in the case of our study below, allows us to focus on the immediate contexts of that process. In a very real sense, this approach assumes that there is no one public that resists vaccination but a set of competing expert voices to which individual families and communities respond as they find themselves in compelling rhetorical situations, that is, situations that demand response with both actions and words. Our discussions below explore further how we understand our study population as a local public responding to and using discourses reflective of community-based issues.
Discourses of flu vaccine refusal: a study of two small communities Our examination of local perspectives on flu vaccination arose from the findings of a study funded by the Virginia Department of Health (VDH), conducted in 2011. This study was commissioned to investigate flu vaccine uptake during the 2009/2010 H1N1 flu pandemic in a composite of rural counties in a public health district (Marmagas et al. 2011). During the 2009–2010 flu season, the health district held its annual in-school seasonal flu vaccination program for children with the aim of increasing vaccination rates in the district and contributing to public health goals to make communities comfortable with mass vaccination programs. The 2009–2010 flu season included the novel H1N1 flu pandemic, and H1N1 vaccination became the target of a national flu vaccination program. The health district offered both the regular seasonal flu vaccinations and the separate H1N1 flu vaccination available that year.5 Children could receive the vaccination either through an injection or a nasal spray during the school day. The school processed insurance and Medicare claims for the vaccinations to reduce cost barriers for parents if necessary. Uninsured children are covered by a statesponsored vaccination program in this area, which enabled them to receive the vaccinations for free. The program worked via an opt-in mechanism where parents received a permission form for each child and were asked to send it back to school indicating whether or not they wanted their children to be vaccinated in school.6 From the perspective of public health officials, the benefits of the in-school vaccination program were simple and obvious: remove all convenience and most cost barriers to flu vaccination, and participation would be high. Despite the ease of access, however, only 22 % of school children in the district participated in the H1N1 vaccination program, and many were ineligible to participate because their parents did not return their permission forms. Vaccination rates for seasonal flu were higher.
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The health district officers approached faculty at Virginia Tech to conduct a study to answer the question “why did so many parents not return forms to allow or disallow their children to be vaccinated for H1N1 in the 2009–10 season?” Hypothesized answers included that parents were disengaged and did not even see or read the forms, that logistical problems prevented the return of the forms (including low literacy rates among parents and guardians), or that parental intentions not to vaccinate prohibited return of forms. The researchers observed at the outset of the study that health district workers hypothesized parental disengagement as an explanation for low vaccine rates, as evidenced by the following “story from the field” published on the website of the National Association of County and City Health Officials (NACCHO): The sad truth is that for many children obtaining parental consent is a huge barrier, not for those parents who deliberate and decide against it (this is their prerogative), but for many parents, for reasons ranging from illiteracy, a lack health literacy/inability to understand what is being asked, inability to attend to this information due to work pressures, substance abuse or other factors that make them unable to return a form and/or difficult to reach. (NACCHO 2009) Thus, the public configured by the health district was one that does not return school forms or have its children vaccinated against influenza because it is composed of parents who are nondeliberative at best or negligent at worst. In identifying this framing of the vaccine-refusing public, we do not mean to suggest that the public health department is indifferent to its local constituency. In fact, the study emerged out of district-level concerns that parents were not actively making decisions about their children’s health by not returning vaccination forms; the people at the district public health office with whom we collaborated are deeply committed to the health of their constituent community. We see these sentiments as expressions of frustration over the adequacy of their genuine efforts to help those in the community. The research group conducted a survey of all parents in two elementary schools (with an 80 % response rate) and follow-up interviews with nine families. Although we cannot speculate about the intentions and motivations of the 20 % who did not respond to the survey, those who did respond reported high levels of engagement, knowledge of the in-school vaccine program, and awareness of the permission form process for the opt-in program, leading to the research group’s finding that disengagement and logistics were not the primary reasons that parents did not return forms. Instead, the responses to the survey indicated that parents intentionally chose not to have their children vaccinated at school and did not return the form as a means of refusing the health department’s vaccination program.7 To supplement the survey data, we conducted ethnographically focused interviews within these communities. Specifically, we employed sociolinguistic methods using semi-structured interview techniques to provide the most relaxed, conversational, and reliable environment possible for the investigation of vernacular speech. With a conversational, semi-structured format, the interview may be able to bridge what is called “the observer’s paradox”—that is, allow for the most true-to-life observation of language use even though there is a heightened awareness of self as the object of the observation (Labov 1972, 113). The less attention that participants pay to their speech on any specific topic, the more reliable the linguistic information gleaned from the interview, at both the level of utterance and at the level of discourse. Participants were contacted through purposeful sampling of the surveys and selected based on interest in being interviewed. All interviews occurred in interviewees’ homes and in the midst of other family activities, such as cleaning up after Saturday morning breakfast, starting after-school homework and chores, and so on. As a result, interviewers attempted to create a situation where respondents felt comfortable giving honest answers and opinions. This effort was not always successful; given the research context, the presence of the health department
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was always an explicit part of the conversations we had. But all interviewers attempted to create a casual, nonjudgmental atmosphere regarding the issues discussed when possible. Our resulting nine interviews, each of which ran 45–60 minutes, consist of fairly lengthy periods of introductory discussion and questions about general things—family life, community history, or what kind of day the interviewees were having. Questions about flu and flu vaccine were introduced as the conversation allowed instead of in a regimented way; as a result, respondents told contextual stories rich in personal narrative and offered arguments both for and against vaccination, depending on their choices. As we conducted the interviews, we quickly observed that the impressions we had of the community based on our own knowledge of vaccine refusal were not always present in the arguments offered by parents. Among our respondents, three themes emerged in the rhetoric non-vaccinating parents tended to use to explain why flu vaccination was not adopted by their families: first, the overall health of the family; second, the positive and negative values of disease as it relates to the immune system; and finally, levels of trust related to standard recommendations for how to prevent and treat illness. These themes, reflected both at the level of sentence structure and at the level of discourse directed to interviewers, contribute to a rhetoric of individual, personal decision-making, both in terms of experience of illness and in terms of options concerning the flu and flu vaccination. This rhetoric constructs flu and flu vaccination as individual decisions and experiences that affect the interviewees and their children, not the wider public of the community as a whole, and are reflective of personal family health. When flu is a personal experience, not a public occurrence, perceptions about the way families could control and interpret their own illnesses are critical points of persuasion in terms of compliance or non-compliance with health officials’ recommendations about flu. Family health and vaccination The health of the family figured prominently as a motivator for decisions not to vaccinate. Non-vaccinating respondents described environments of overall good health in the home and healthy children, which therefore did not require a preventative medicine like a vaccination to avoid a disease like flu. These descriptions occurred even when participants also described extensive histories of disease in the family. In Interviews A and B, the respondents said they did not opt to have their children vaccinated against the flu because they had never had the flu and so saw the flu vaccine as unnecessary. The respondents offered very particular narratives about what flu is and the family’s risk of it. Interviewee A described her family as relatively healthy in terms of infectious disease, at one point noting that two of her children had only been prescribed antibiotics once, and the third had never taken antibiotics at all. Two statements regarding the flu vaccine in particular stood out: My kids have never had the flu vaccine and they’ve not ever had the flu so I just choose not to. We’ve been really blessed to have, you know, the kids (…)8 like right now my oldest one has got, you know, a typical cough and, you know, that, but you know as far as not really with major flu issues, you know, just typical cold coming in season change, you know, it was the cough and the croup and go along with it so.
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A similar sentiment emerged in Interview B. In this interview, conducted with both mother and father, the father stated that “They rarely, the kids hardly ever get sick in the winter.” The mother said, about the flu vaccine: I mean I, as far as back as I can remember, I’ve never had the flu and I was never vaccinated, but now my little sisters and my little brother my mom vaccinated. They’ve all had the flu multiple times. Conceptually, the point these parents made is that they or their children have remained healthy in the past without getting the flu vaccine; they question whether they need to take on the risks that come with any medical intervention to avoid something that they have been able to avoid without the additional risks of intervention. Looking more closely at the statements “My kids have never had the flu vaccine and they’ve never got the flu” and “I’ve never had the flu and I was never vaccinated” at the level of sentence, we see that this sentiment is syntactically realized by a complex sentence with the two conjoiners and and so. The first two independent clauses linked by and utilize the past perfect, which denotes action that occurred in the past and yet may continue into the future. The two conjoined clauses are followed by another conditional clause realized with a present tense verb, marking the resultant choice not to vaccinate. Of interest here at the level of the sentence is that the conjoiner and has semantic and syntactic restrictions. Not only must and join items that are syntactically equivalent—that is and cannot join unlike clauses and phrases—the conjoiner also wants to join clauses that are semantically equivalent. So, for example, the construction I like bananas and trees have leaves includes syntactically equal phrases (e.g., subject, verb, object construction) that are nevertheless not semantically equal (e.g., bananas and trees are not linked by any meaning in the sentence). In Interviewee A’s comments, although both clauses joined by and contain the word flu, they are not semantically relatable. Having the flu vaccine is not equated with never having the flu. In fact, the two constructions are implicationally related. The juxtaposition of the two constructions in just this way in turn strengthens the so clause. In other words, the preposed clauses work as an evidentiary list that bolsters the condition of the so clause, semantically interpreted as “We don’t have a need to vaccinate.” This complex of clauses is strong, and the element of fatedness enters in the very next sentence, “We’ve been really blessed.” Further heightening the element of fatedness around future illness are the hedged phrases “you know,” present in Interviewee A’s comments. While no one-to-one correlation exists between linguistic behavior and cognitive realization, we can ascertain though her linguistic performance that, symbolically, Interviewee A recognizes that disease is beyond the level of control. While some of her utterance suggests that there is a strong reason for not vaccinating (“they’ve not ever had the flu”), her language use also suggests an understanding of the unpredictability of disease and disassociation of the vaccine as a reasonable means for making disease more predictable. The importance of family health appeared among other respondents as well. Interestingly enough, many of these respondents reported severe incidents of illness in their families, yet still relied on the argument that they were healthy and therefore did not need a flu vaccine. In Interview C, the interviewee responded as follows: Interviewer: What about like when (…) somebody gets sick then does everybody seem to get sick or? Interviewee C: (…) we hardly ever get sick to be honest. I mean even a cold. We’re pretty lucky. Now [daughter] gets the stomach virus. I think she has a nervous stomach. She throws up, last week it was two days in a row I had to pick her up at school. The whole class had a little virus, but we usually don’t get sick.
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Moments later in the interview, the respondent’s daughter interrupted the interview saying, Child: I was the first one in my school to get the um—. Interviewee C: —oh, the Swine Flu. Yeah, they did have the Swine Flu. I had forgot about that. That was two years ago [. . . .] Yeah, that’s right because I took them to the emergency room. Although this slip could be attributed to recall bias because it had been nearly two years since the swine flu incident, the exchange is still significant because it demonstrates the rhetorical power of the argument that a healthy family that never gets sick doesn’t need a flu vaccine. (However, considering that flu and H1N1 vaccine was the topic the interviewers came to talk to her about, the idea that she simply didn’t remember the incident seems highly unlikely.) Even in a context where this respondent’s children were hospitalized with H1N1 influenza, the ideal of good family health was more important than the actual experience of illness in decision making concerning vaccination. Disease and the immune system Interviewees further expressed differing views of illness, health, and the immune system as justifications for not vaccinating. Interviewee B argued that exposure to disease is important to staying healthy because it “builds up” the immune system: I think with my girls I know I see a lot of my friends won’t let theirs out, you know, and play and stuff like that and I think it really hurts ‘em. Mine, I’ve always turned them loose like in the winter time we was out in zero weather. I think that builds their immune system up. Interviewee A offered a differing perspective on the immune system that also functions as a rationale for avoiding vaccination. The interviewers asked her for her opinions about the wide availability of flu vaccine, specifically asking, “What do you think about [the flu shot] being available everywhere?” such as pharmacies like Walgreens and superstores like Wal-Mart. She responded: If you have a weak immune system, I think it’s awesome to be there for them, you know, I just think if you have a strong immune system and you’re not sick, you know, you shouldn’t break it in if you don’t have to. Here, two different metaphors about the immune system—wanting to “build it up” through natural disease versus not wanting to “break it in” through vaccination—are used to justify perspectives on health and illness that lead to the conclusion that vaccinations for flu are not needed for people who are healthy. Emily Martin’s (1994) Flexible Bodies: The Role of Immunity in American Culture from the Days of Polio to the Age of AIDS suggests how metaphors about the immune system might explain these ways of interpreting the body that problematize the role that vaccinations play in preventative medicine. In the case of Interview B, the woman argued that protecting children from things like cold weather actually harms children because their immune systems do not have a chance to be “built up.” This defense metaphor emphasizes the idea that giving the immune system something to fight, something to do, keeps it active and working so that it is available when one really needs it. As Martin states, the defense metaphor likens the immune system to an army that engages in battles with ‘invading’ antigens and therefore must be prepared, practiced, and well-stocked. Alongside this interpretation of the immune system coincides the belief that “through practice and training, one can develop an immune
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system more able to survive threats” (Martin 1987, 237). Quoting Pearsall (1987), Martin states that “like an army which is prepared and waiting but never called into action, an unused immune system may become obsolete, not sufficiently prepared for new types of attack” (237). Interestingly, the defense metaphor precisely expresses how vaccines work—they expose the body to antigen to engage an immune response without actual disease so that, if the active microbe is encountered later, the body can fight it. However, to Interviewee B, exposure to natural disease that presumably comes with cold weather is preferable to exposure from vaccination. In the case of Interview A, the important goal is to preserve the immune system for a time when it is really needed, which means avoiding unnatural exposures through vaccination. Not wanting to “break in” one’s immune system is one way of articulating how immunity is most effectively maintained. Although this metaphor still views the immune system as needing training, this training is more akin to an education where the immune system has the capacity to learn from the antigens that it encounters over time, but within an overall system that works effectively on its own if properly cared for and “well-brought up” (202). Within this paradigm, vaccination constitutes a “crash course” for the immune system. Martin states that people: may quite reasonably believe that they and their immune systems are already able to change and adapt flexibly, rapidly responding as needed to a continuously changing environment. In such a view, a vaccine, bludgeoning the delicate adjustment of the finely tuned immune system with antigens at a time when there is no actual threat, could easily be seen as something undermining health. (202–203) Despite the differences between their views on the immune system, both Interviewee A and Interviewee B reflect widely different perceptions and values of disease and preventative care than those offered by the public health and medical communities. First, each perspective defines different ways of protecting the immune system of the individual, not the community. Since vaccinations, based on the notion of “herd immunity,” work best at the level of the population, vaccination programs are targeted toward communities, not individuals. However, one’s immune system is highly individualized by virtue of being in one’s own body as well as being made up of individualized responses to medicine and disease as dictated by differences in genetics and lifestyles. Second, both metaphors contravene basic values regarding avoiding disease as being each individual’s optimum goal in all health behaviors; some perceive getting sick as a good thing, while others perceive that getting sick, even if it produces unpleasant symptoms, is more preferable to the body than the experience of vaccination. Parents who did not vaccinate their children also expressed a preference for different means of preventing the spread of flu than recommended by health officials as well as a general sense of distrust of public health as a government institution. In addressing the spread of flu, Interviewee A states, “If you’ve got a sick child, you know, it’s just not right to go to church in the nursery with your kids snotting and sneezing over everybody, you know.” The implication in this description is that, if one does become ill, it is improper to interact with other people and possibly infect them. The respondent concurs with public health beliefs that flu is a disease with public implications but does so by representing a sick person’s responsibility to self-quarantine, suggesting such a method is the most effective and appropriate means through which infection is contained. She goes on to say that this is the case for her entire family, “It’s just if you’ve got a birthday party to go to, you know, and it’s hard to explain, well, [daughter], I know you’re perfectly healthy you need to go, but you can’t go
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because your sister is sick, you know.” As she articulates these efforts to protect the public from her childrens’ sicknesses, it is interesting that the locus of preventative activity still lies in home with domestic family decisions. Personal practices and public health Interviewees also characterized the vaccine as an ineffective method for preventing flu, perhaps made more suspect because government officials advocate for vaccination. Interviewee C states: I just, I feel like it’s just better to take the chance on them just catching it than to intentionally give it to them, you know, and they try to say that it’s the dead virus that they give you or whatever. I just don’t believe that when 90 % of the people that take the shot are down for a week with the flu. Interview B similarly echoed the idea of “taking chances” with the flu when she stated, “I would just rather take my chances of getting the flu” than get the flu vaccine. Both of these positions embed the commonly-held suspicion that the vaccine may transmit the flu, as well as a sense that health officials are not entirely honest about the flu vaccine’s effectiveness. This view appears particularly in the case of Interviewee C who said, “I know they try to say that it’s the dead virus” but follows with “I just don’t believe that.” It is important to note that the health department provides many services for free in the study area. Respondents reported that dental services, annual physicals, fluoride treatments, and other vaccinations such as DTaP boosters were among the many services that the public health department provided through school. Although not all respondents reported taking advantage of those options, these outreach efforts seem to garner an uneven response, particularly among the public that did not vaccinate. For example, when asked, “Do people like that? Do people like […] the health department in their space?,” Interviewee B responded, “No, and I don’t either.” As researchers, we also observed that when we identified ourselves as being with Virginia Tech we received more positive responses to our phone calls and in-person interactions than when we identified as working with the health department. In an environment where public health efforts are perceived as somewhat intrusive, the endorsement of the flu vaccine by the health department may work to increase suspicion about the vaccine’s effectiveness.
Local publics and vaccination The public we studied seems to organize itself around discourses that emphasize a shared value of family health, realized through responsible care of the immune system (whether that means exposing it to or protecting it from encounters with antigens) and enacted through practical, non-scientific behaviors designed to protect the self from needless encounters with disease. The discourse that the family “rarely gets sick” is perhaps most telling is this regard. Even though every family we talked to, both those who vaccinated as well as those who did not, described many incidents where their children were very ill and even hospitalized, those who did not vaccinate still maintained that their families were overall very healthy and had “good immune systems.” The reasoning offered by the families suggests a different way of defining what it means to be healthy. Although traditional public health and medical perspectives may maintain that avoiding disease is the measure of health, within this public, incidents of disease strengthen the idea that one’s family is overall very healthy because it is the recovery that
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matters. In the end, the immune system fought the battle and won the war either because it was properly cared for and could fight off antigens before symptoms appeared or it triumphed in response to an invasion of serious disease. Deeply skeptical about the efficacy of the flu vaccine, this public relies on the self—whether an internal system like the immune system or the decision to carry around hand sanitizer—as the site of positive health behaviors that control illness. Thus, controlling illness does not necessarily mean preventing it, especially in relation to others. The flu vaccine is something other people need because they are weaker and cannot fight off the flu on their own, and healthy people are not responsible for getting vaccinated in order to protect those who are weaker. Each individual is responsible for his or her own caretaking of the immune system if internal resources for preventing or fighting disease are lacking. This perspective on flu is difficult to engage through public health efforts for a few significant reasons. First, a local public that subscribes to a personalized definition of flu might not respond to vaccination efforts given in the most public of places—such as elementary schools. In a context where family health is an essential value to a public, being vaccinated in school is tantamount to admitting weakness or the family’s inability to attend to its own care of the immune system. The families in our study reported vaccinating against other diseases, so vaccination overall was not necessarily seen as a bad thing. It is likely that different diseases produce different sets of rhetorical responses, and consequently the vaccines designed to prevent those diseases figure either more or less prominently in the value a public places on vaccinations as preventative health measures. For example, a family might feel comfortable vaccinating children against polio but believe that hand washing and staying at home when sick is more appropriate to flu prevention. Second, these interviews show how ideas about flu are inextricably linked to the flu vaccine; they do not correspond with national concerns about vaccinations writ large. The parents in our study do not use arguments about vaccine ingredients, quantity of shots, or concern about autism in their rationale for not vaccinating against flu. Instead, their decisions are defended using discourses that place a heavy value on family health. By examining the discourse of local publics, the nuances of vernacular rhetorics can be studied to understand the instantiations of vaccine concern as they occur daily these communities. Even our small study of nine families demonstrated an immensely more complex rhetorical situation than originally anticipated by public health officials, even though the members of the public health department were part of the communities we studied. In the case of these communities, it may be that better options for increasing vaccination rates would include vaccinating at churches, since respondents noted church as a more attractive locus of community activity than school as it was not associated with the state or state services; or it could mean that outreach for this community might require initiatives apart from removing cost and convenience barriers to flu vaccination; or it could be a matter of working with key community members and leaders unaffiliated with the district public health office to encourage a change in the local, community-level conversations about vaccinations. More study would be needed to see which of these approaches would be most effective. In particular, study of the vernacular rhetorics people use to describe and justify their decisions can give important insight into the realities of decision making. What works for this community will not necessarily work for others. The vernacular methodology discussed here offers the research intervention needed to illuminate these issues—and identify possible solutions—at the local level. Indeed, incorporating the idea of phronesis—the very different kind of reasoning process that occurs as local communities and families enact decisions that reflect their values—would work to scaffold scientific arguments of “fact” and perhaps lead to preferred outcomes for opposing publics.
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When we apply a sociolinguistic, ethnographic method situated in the daily contexts, lives, and narratives of community members, for example, we can elicit and document rhetorical constructions that appear to be persuasive to them. Our findings suggest that using local data to inform public health practices may be more effective than is traditionally assumed, and acknowledging the nuances of locally held beliefs, even if they reflect nonstandard epistemologies, might lead to better outcomes for entire communities. The public or publics might be wrong according to biomedical perspectives. But examining a public at the global level misses the nuanced and situated lay beliefs that link to other values and practices in their daily lives. For public health officials to develop effective programs to promote vaccination, they need to know from the inside out why people believe what they do and how those beliefs are linked to other values and practices in their daily lives. In addition, the local and global, personal and public elements of vaccination must be addressed and the effects of their ambiguous status as individual measures that protect the public’s health must register in national conversations about the meaning and effect of vaccine skepticism.
Medicine’s publics Dr. Paul Offit, a vocal vaccine advocate and Chief of Infectious Disease at Children’s Hospital of Philadelphia (CHOP), recently offered the following rationale regarding personal belief as a basis for avoiding vaccination: Science and medicine are evidence-based systems. They are data-based systems, not beliefs. If you want to feel better about vaccine use, I think one needs only to look at the roughly 20,000 studies that have evaluated the safety or efficacy of vaccines, or the hundreds of studies that have looked at what happens when you combine vaccines and give them at the same time to feel confident that, in fact, there are data to support that choice. (Offit 2012, emphasis added) This statement exemplifies Hauser’s observations about the distinction between phronesis, or the practical reasoning the public must engage in for actionable decisions to be made in communities, and scientific inquiry, which engages in the theoretical pursuit of truth claims without attention to how they are, or whether they should be, put in to action. Dr. Offit’s statement is factually correct about the efficacy of vaccines, but decisions based on scientific fact are bound to the deliberative processes that must take context, values, and beliefs into consideration if they are to have popular resonance. Dr. Offit’s comments thereby offer an excellent example of the distinction between the kind of reasoning that occurs in the public sphere and that which occurs in science, as well as why the gap between the two can sometimes seem so big. We do not dispute the scientific fact that vaccines work in the body to produce immune responses that result in protection from disease without the misfortune of disease itself or that vaccines have been successful at eliminating or greatly reducing the frequency of many of history’s most deadly, dangerous diseases. However, Dr. Offit’s position fails to recognize that the implications of those facts become the concern of the public realm and occur outside of science itself. Once science becomes operationalized into policy, the issue necessarily attends to public needs—the requirements, values, and ethics that a community has and the knowledge they want to use to make decisions based on those factors. And, as Hauser (1999) points out by way of Aristotle, beliefs will always exist alongside facts as valuable sources of decision making (99). That is the virtue of public deliberation.
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With respect to vaccination, the fact that civic decision making does not always replicate scientific reasoning presents a problem for public health. Everyone must be immunized for vaccinations to work best, meaning that the greatest percentage of the population must be reached to ensure vaccine efficacy through herd immunity. If every local community had a different vaccination policy, then some communities simply might decide not to vaccinate, putting even vaccinating communities at risk, particularly in today’s highly mobile society. This tension explains why vaccination has remained such a hotly contested topic since the very first programs in England in the early nineteenth century. Vaccination concern is a problem that has not gone away, no matter how successful vaccines have been, no matter how many diseases they eradicate, no matter how many studies are conducted on how effective and safe they are, and certainly no matter how many articles and surveys and pharmaceutical company brochures are published based on nationwide surveys of categorized beliefs that do not reflect the lived experiences of many citizens. In fact, the decision-making and reasoning processes of those opposed to or concerned about vaccines transcends this long-held and historically unsuccessful rhetorical approach. Those advocating scientific reasoning as the basis for vaccination decisions must realize that if none of the measures they have used to counteract vaccine discourses have worked to stamp out vaccine skepticism in the past two hundred years, they are not going to start working now. Our findings offer public health professionals new options for initiating and sustaining conversations about vaccination with skeptical individuals and families. Our analysis also suggests that attention to local communities and discourse choice matters in determining both the causes and contexts of vaccine refusal. Public health may have a national mandate, but vaccination decisions are perceived to be personal. Not only are they experienced as personal, but they are also asserted as personal and unique by those who articulate questions about them. This is, perhaps, where medical humanists and rhetoricians are best poised to enter into, and contribute to, popular discussions about vaccination concerns. Humanistic study, through its emphasis on discourse-in-action and attention to the qualitative attributes of populations, offers deeply contextualized interpretations of the local public perspectives that can link vaccination to rhetorical practices that are most likely to diminish stalemates and increase uptake. Attempts to understand national trends in vaccine refusal will always be of interest to researchers and public health practitioners, but real work to understand individuals and their decisions needs to start where they live and examine what they say about their decisions and beliefs. Understanding how various discourses subtend and support vaccination decisions— discourses about individual freedom or personal decisions and the family, for example—will not only help public health workers tailor interventions to particular populations but will also contribute to the national conversation about vaccination and infectious disease. Even in qualitative research, categories of publics are constructed as artifacts of the research process. Nevertheless, by beginning with the local and moving outward, we can situate vaccine hesitancy and skepticism in the rhetorical contexts of its articulation, rather than in its abstract similarities across various publics. In this way, targeted public health interventions can responsibly intervene in particular communities of practice, rather than inventing categories that are impracticable as recommendations for real-world public health efforts.
Author’s Note (VDH) conducted in spring and summer 2011, the Cumberland Plateau Health District 2009–2010 Flu Season Vaccine Study, conducted by Susan W. Marmagas (Principal Investigator), Clare J. Dannenberg, Francois Elvinger, Bernice L. Hausman, Heidi Y. Lawrence, Lauren Fortenberry, Elizabeth Anthony, and Stacy Boyer. See Marmagas et al. (2011) for the study final report.
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For example, in 2009, only 60.2 % of parents had neither refused nor delayed any vaccinations for their children, 4 by 24 months of age (Smith et al. 2011, 135). Although many participants in this study reported delaying vaccinations because children were ill at the time of their appointments, the results also revealed that those who delayed were less likely to believe that vaccines are safe and were more likely to believe that the side effects of vaccination are serious, that too many vaccines can overwhelm a child’s system, and that children receive too many vaccines than parents who neither refused nor delayed any vaccinations for their children (138). 2 The number of pediatric practices that refused or dismiss families who are unwilling to have their children vaccinated according to the AAP-recommended schedule has risen from 18 % in 2005 to 25 % in 2011 (Kluger 2011). 3 Jacobson, Targonski, and Poland (2007) offer a “taxonomy of reasoning flaws” among antivaccinationists; others seek to provide specific, factual refutations to concerns about vaccine ingredients (Parker et al. 2004: Price et al. 2010) and the safety of vaccinations (Destefano et al. 2004, Katz 2006). 4 The hazy configuration of what classifies as Appalachian vs. general Southern communities is one example. See Montgomery (2000). 5 Since the 2009 pandemic, H1N1 has been routinely included as part of the regular seasonal flu vaccination. 6 Public health officials have debated the merits of opt-in versus opt-out vaccination programs at length (Chapman et al. 2010, Halsey et al. 2005). The opt-in program is perceived to be less politically difficult because children will receive no treatment if no response is gained from parents, though participation rates may be lower; opt-out programs are perceived to have higher rates of participation through the default treatment mechanism, yet are more politically charged. 7 Complete findings of the survey, along with the rest of the research, are published in a separate report (Marmagas et al. 2011). 8 Elipses surrounded by parentheses in transcript excerpts indicate comments that are inaudible in the recording. Elipses surrounded by brackets in transcript excerpts indicate spaces where text has been excised for space.
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