Abstract
Parents who confidently reject vaccines and other forms of medical intervention often seek out pediatric care, medical treatments, and prescription medications for their children in ways that seem to contradict these views. Drawing on in-depth interviews with 34 parents who rejected some or all vaccines for their children, this article examines the strategies they use to pharmaceutically manage their children’s health, even when espousing a larger rejection of pharmaceutical interventions like childhood vaccines. Rather than treating decision-making as solely an internal process, this article shows how medication use results from individual, interactional, and institutional contexts, with different mechanisms of encouragement and enforcement. Using three illustrative cases, I show how parents manage ambivalence, which allows them to accept medication for their children as a tool to be deployed as deemed necessary in particular contexts while at the same time communicating their rejection of it. I conclude with suggestions for how to engage parents around healthcare decision-making.
I can’t say enough about them, they were great. Lots of prenatal, lots of postnatal, they totally honored our . . . it is not like we had to fight for anything, for no interventions. We didn’t do the eye drops, we didn’t do the silver nitrate, we didn’t do the vitamin K. We didn’t have intervention as far as medical goes. No immunizations. So, they totally respected our hippie desires.
Janine recalled her daughter’s birth in a hospital staffed with nurse midwives as positive and supportive of her and her partner’s priorities. She described how important it was to her and her partner (who gave birth) that their baby received no medical or pharmaceutical interventions. Now 6 years old, their daughter Cameron remains unvaccinated, reflecting their continued opposition to vaccines and pharmaceutical products. Yet, in recounting Cameron’s healthcare over time, Janine described seeking prescription medications for her, even as she remained resolute in her opposition to them. She recalled one instance, “She got a really nasty ear infection and we couldn’t fly home and they wouldn’t let us on the plane. . . . And we got her antibiotics when we were in California so we could get on the plane.”
Parents like Janine confidently reject vaccines and other forms of medical intervention but also seek out pediatric care, medical treatments, and prescriptions for medications in ways that seem contradictory. Their explanations of these choices provide an opportunity to consider how rejection of medical management is not categorical, so much as it is contextual, strategic, and representative of parents’ perceptions of their agency. This article provides a close examination of the decision-making parents use when opting to seek pharmaceutical treatment, even when rejecting pharmaceutical interventions like childhood vaccines. I elucidate how parents use pharmaceutical products as tools to be deployed in particular contexts. Using data collected in interviews with parents who refused childhood vaccinations for their children but consented to pharmaceutical solutions for other medical conditions, I explore the contexts in which medical consumerism becomes part of family strategies for health promotion. Rather than treating decision-making as solely a personal process, I examine how medication use results from individual, interactional, and institutional contexts, with different mechanisms of encouragement and enforcement.
The New Grammar of Illness and Pharmaceutical Solutions
From their first moments in their new role as parents, as Janine’s story illustrates, people engage a social world in which children’s growth, development, risk of infectious disease, and overall health are monitored and managed by medical experts in an effort to prevent illness or optimize health. Health and the proper management of illness and risk have become moral responsibilities (Crawford 1980) “to be fulfilled through improved access to knowledge, self-surveillance, prevention, risk assessment, the treatment of risk, and the consumption of appropriate self-help/biomedical goods and services” (Clarke et al. 2003:162). Health is no longer a state of wellness or illness, but rather something to continually work toward, to manage, and to control (Conrad 1992): individuals are perpetually “patients in waiting” (Timmermans and Buchbinder 2012) or “the worried well” (Lombardo 2004; Wagner and Curran 1984).
Managing risk of illness or actual experiences of sickness often lead people to adopt individualized consumption strategies (Nettleton 1997), including relying on pharmaceutical products. As Sulik (2011:470) notes, a culture of medical consumerism “elevates the individual responsibility to take action proactively and methodically in regard to health and/or illness.” This process of “pharmaceuticalization” defines how “social, behavioral or bodily conditions are treated, or deemed to be in need of treatment/intervention, with pharmaceuticals by doctors, patients, or both” (Abraham 2010:604; Bell and Figert 2012). As bodies are increasingly defined as sick or at risk and as more pharmaceuticals are developed and approved, a growing number of conditions or vulnerabilities can be pharmaceutically managed. As these products and their uses become routine, individuals may see almost any aspect of their lives as benefiting from medical management (Fox and Ward 2008). This broad acceptance of medications, Dumit (2010:37) suggests, exists as part of “a relatively new grammar of illness, risk, experience and treatment—one in which the body is inherently disordered and in which health is no longer the silence of the organs, but it is illness which is silent, often with no symptoms.” This logic is regularly accepted even by those who criticize pharmaceuticalization.
Although there are limitations to the extent to which individuals are able to meet the expectations of pharmaceuticalization, medical consumerism for both children and adults may be viewed as a social response to medicalization and as a form of sociopolitical empowerment (Sulik 2011). This duality is worth considering. As Chamberlain and colleagues (2011) suggest, we must pay attention to whether consumers feel ambivalent about medicines and the extent to which resistance to them is situationally specific and dependent on the nature of the medications, as well as when they are taken and why. This article considers these ambivalences as they relate to children’s bodies and parental strategies to manage them.
Vaccines, Pharmaceuticalization, and the Management of Children’s Health
As children grow and develop, pediatricians and other medical experts stand ready to evaluate whether they are growing appropriately, missing milestones or stages, or failing to thrive, any of which may require medical management (Armstrong 1995). Parents who accept management may be asked to change their children’s lifestyle or diet, consent to surgical or other invasive procedures, or give their children prescription medication. Pharmaceutical management, in particular, becomes a tool by which children’s bodies or performances are normalized to be similar and equivalent to those of their peers, or are optimized to be even better (Conrad and Potter 2004), in what parents perceive as an increasingly competitive world (Lareau 2003). Parents’ acceptance of technologies as tools that can optimize their children’s bodies, and their willingness to seek them out, shows how parents aspire to feel in control of their children’s successes and the risks they may face. These dynamics also reflect class privilege: wealthy parents are more likely to view their efforts to strategize opportunities and resources, many of which are now medical and pharmaceutical, as important ways to provide advantages for their children, and they have the tools and resources with which to do so.
Childhood immunization provides an important example of pediatric management of risk and opportunity. In this realm, physicians, public health agencies, schools, childcare settings, and nonprofit organizations insist that parents view their children, from birth onward, as continuously at risk of disease, asking parents to respond with consent to vaccines, manufactured by for-profit pharmaceutical companies (Attwell et al. 2017; Reich 2016b). Yet parents, particularly those with the greatest access to resources, are increasingly arguing that vaccines themselves create long-term illness risk and should be avoided in favor of other management strategies.
Unlike many other pharmaceutical strategies, vaccines are most effective when used by approximately 85 to 95 percent of the community (depending on the disease) to create herd immunity. These high levels of protection keep infectious disease contained and protect individuals in the community who are most vulnerable to infection. This includes those who are immune-compromised, too young to be vaccinated, have lost immunity with age or illness, or for whom immunizations are not effective (Sobo 2016). Parents in the United States are thus expected to immunize their children against 13 diseases on a schedule set by a federal advisory panel and approved by the American Academy of Pediatrics. Vaccines are administered in doctors’ offices as part of routine pediatric care to children between birth and age 6 years—with others offered later into adolescence and young adulthood.
The expectation that parents will provide consent for immunization is communicated via institutional requirements in which parents must show evidence of immunization for admission to schools or childcare settings or file an exemption as allowed in their state. Currently, all states and the District of Columbia (DC) allow exemption for medical reasons, and 45 states and DC allow exemptions for people who have religious objections to immunizations. Additionally, 15 states allow philosophical exemptions for individuals who object to immunizations because of personal, philosophical, or conscientiously held beliefs (NCSL 2019). 1 Just as class privilege encourages consumption practices that lead parents to feel in control of health promotion, exemptions are used most often by white, affluent families (McNutt et al. 2016; Smith, Chu, and Barker 2004; Yang et al. 2016).
Legal enforcement of vaccination occurs at the time of school enrollment. Accordingly, pediatricians must persuade parents to consent to vaccines that are recommended much earlier—in the first years of life, when infants and toddlers are at highest risk of the most devastating complications of infection. Whether parents perceive pediatricians as trustworthy, empathetic, honest about what they perceive to be the possible risks of vaccination, and independent of government or pharmaceutical sources of information matters in these encounters in and out of the United States (Leask 2009; Paulussen et al. 2006; Ward et al. 2019).
Vaccines in the contemporary context are part of public health strategies. Yet, parents largely see them as a tool for individual benefit, which represents how vaccines have been marketed for the past century. Describing promotion of the diphtheria vaccine in the early twentieth century, Colgrove (2006:90) writes, “Because [the vaccine] was relatively safe and painless, health officials could appeal more directly to individual self-interest, without asking people to subordinate their well-being, or that of their children, to the good of the community.” Distribution has also reflected individualized consumption strategies, goals, and resources. The polio vaccine in the 1950s, for example, was instantly in high demand and was most available to families with private resources and personal physicians, and many, including the American Medical Association, insisted it should remain that way (Colgrove 2006; Oshinsky 2005).
Funding initiatives, global eradication campaigns, and passage of laws to require vaccines for school attendance through the 1960s and 1970s in the United States redefined vaccines as a key component of public health. However, claims that vaccines are an important tool for individual benefit have continued to inform public health and pharmaceutical messaging. These campaigns and advertisements insist that your child can be “one less life affected by cervical cancer,” in the case of the vaccine against some strains of human papilloma virus, that you can “protect yourself and the people you love” by getting a flu shot, and that, according to the U.S. Centers for Disease Control and Prevention (CDC), “vaccines help strengthen your baby’s immune system and keep him safe from vaccine-preventable diseases.” 2 Appealing to emotion, the CDC advises parents, “Love them. Protect them. Immunize them.”
By following expert advice and consenting to immunization, parents signal their love of their children or their superior decision-making when it comes to health promotion and disease management (de Oliveira Chiang et al. 2015; Whidden 2012). Illustrating the historic consistency of this message, in 1926, a representative of the American Child Health Association stated, “The time will come when every case of diphtheria will be an indictment against the intelligence of parents” (quoted in Colgrove 2006:98). This individual messaging has been successful and provides the logic by which parents who reject vaccines see their decision as one of evaluating the relative risks and benefits to their children but not others (Reich 2016b; Sobo 2016).
Pediatrics, Patient Empowerment, and Parental Challenges to Medical Authority
Pediatrics’ “core tasks bear directly on social regulation of childhood and family life” (Halpern 1988:13). By seeing children as potentially sick, pediatricians dissolve “the distinct clinical categories of healthy and ill” and thus can “bring everyone within its network of visibility” (Armstrong 1995:395) as requiring care. By the early twentieth century, even before many vaccines were available, doctors began dispensing scientific and medical advice to women to define what it meant to be “a good mother, a proper mother” (Apple 2006:2). Throughout the twentieth century, women differentially embraced, challenged, or ignored the tenets of scientific motherhood, reflecting differences in class, ethnicity, family immigration history, experience, education, and region (Litt 2004). By the mid-twentieth century, mothers had become savvy consumers of professional advice, and health professionals needing patients began recognizing the importance of mothers’ own knowledge on parenting (Apple 2006). These changes accompanied broader challenges to medical expertise, including the women’s health movement, legal challenges that defined informed consent requirements, and cultural discourses that posited the importance of the individual as a political actor. Pediatrics, a specialty built on the premise that children’s health could be optimized through well-care rather than simply treatment of illness, responded by newly defining the profession as a partnership between parents and providers.
Medical experts often encourage parents to become self-efficacious and vigilant on behalf of their children, and to educate themselves about their children’s health (Anderson 1996; Gage-Bouchard 2017). Experts have designed programs specifically to empower low-income or vulnerable groups to participate fully and advocate for themselves and their children (Anderson 1996). Efforts to empower parents to manage their children’s asthma, diabetes, or learning disabilities are ubiquitous, based on the assumption that empowering parents will lead them to choose for their children what experts would recommend. However, much research on empowered parents, including studies of chronic disease management, school choice, and school governance, shows that the most privileged parents remain the most empowered to advocate for their own children, often furthering inequality (Addi-Raccah and Arviv-Elyashiv 2008; Anderson 1996; Lareau and Muñoz 2012). These privileged parents also receive more respect from providers as potential partners in their children’s care and are more likely than low-income parents to have their views taken seriously (Gengler 2014). Privileged parents are also the parents most likely to question vaccine recommendations and expert advice.
The increasingly routine use of pharmaceutical management in children’s lives can be seen in the increasing number and frequency of federally recommended vaccinations against infectious diseases by the age of 2 years—from six in 1970 to approximately 26 in 2015 (CDC 2019). Arguably, as parents provide consent to routine childhood vaccination for their children as recommended by experts and enforced through school attendance laws, they passively communicate their acceptance of the tenets of pharmaceuticalization and, in turn, their identity as good parents who take their children’s health and potential illness seriously.
However, few technologies are accepted without ambivalence, and vaccines are no exception. Despite strong cultural pressures to adhere to vaccine schedules, an increasing number of parents are rejecting or delaying childhood vaccinations, consenting to some and rejecting others, and customizing schedules for each child in their family on a schedule of their own design (Dempsey et al. 2011; Nadeau et al. 2014; Robison, Groom, and Young 2012). Nationally determined vaccine schedules are the antithesis of personalized medicine; many parents who craft individualized strategies to optimize their own children’s health resent what they see as a one-size-fits-all approach to health management (Reich 2016b).
In the United States, an estimated 2 percent of children, or 80,000 kindergarteners, enroll in school without having received any vaccines, using a legal exemption available in their state (Blank, Caplan, and Constable 2013; Samuel 2017). These numbers do not include homeschooled children or those registering in private schools that do not enforce state law. More commonly, as many as 25 percent of children have not received vaccines according to professional recommendations; instead, these children receive only the vaccines their parents deem important, and they receive them on an alternative schedule, most often driven by the parents and not medical providers (Nadeau et al. 2014). These parents reject scientific consensus and instead prioritize a self-described commitment to optimizing their children’s health, which they see vaccines as potentially jeopardizing (Reich 2016b; Sobo 2015). As with many examples of parental perceptions of efficacy to shape social opportunity, parents who reject vaccines are most likely to be white, college-educated, and have a higher family income (Smith et al. 2004; Yang et al. 2016).
Rather than accept claims that vaccines are an important component of ongoing pharmaceutical management of the disease risk children face, parents who reject vaccines instead argue that the body is inherently healthy and benefits from lack of intervention (Reich 2016a). In Dumit’s (2010) terms, these parents embrace a different grammar, one of therapeutic nihilism, seeing the body’s power to heal itself as almost always adequate, except in extreme situations. From this perspective, interventions—especially vaccines—that manage healthy bodies are suspect. Highlighting the competing views of vaccines as dangerous pharmaceutical products versus tools of optimization, a newsletter article from the largest U.S. organization opposing widespread use of vaccination explained, You would think that physicians would know better than to assume that simply because someone does not show obvious symptoms immediately after being injected with a powerful bioactive pharmaceutical product doesn’t mean that all is well. . . . Vaccines are pharmaceuticals, biological drugs. They’re not sugar water or saline solution. . . . This gets to the conundrum we’re facing, and that is that most doctors don’t seem to understand or believe that vaccines are powerful bioactive pharmaceutical products. (Cáceres 2015)
Parents’ insistence that vaccines are a manifestation of pharmaceutical intervention—or invasion—into healthy children’s bodies, and their subsequent rejection of them, appears then to be rejection of pharmaceuticalization. This underscores larger cultural expectations that parents manage their children’s health and exert control after careful deliberation and without (or despite) ambivalence. Parents who reject vaccines spend considerable time and energy gathering information to make what they see as the best decision for their children’s long-term health (Reich 2016b).
One would expect that parents who laboriously strategize to reject vaccines, often at some personal cost, would reject other efforts to pharmaceutically manage their children’s bodies. Yet, even as some parents reject pharmaceuticalization in the case of vaccines, they accept other medical and pharmaceutical regimes. Rather than insisting all medications are unnecessary and undermine the body’s natural powers to heal itself, parents see themselves as fully empowered to choose if and when pharmaceutical products are a useful tool to solve problems facing their children.
In this article, I use data from in-depth interviews with 34 parents who reject some or all vaccines to examine the strategies these same parents use as they aim to pharmaceutically manage their children’s health in complex and seemingly contradictory ways. In doing so, I elucidate how rejection and acceptance of pharmaceuticalization in daily life is nuanced, contextual, and linked to parental identity and perceptions of control. Using three cases to illustrate larger patterns from these data, I show how parents manage ambivalence, allowing them to accept medication for their children while at the same time communicating their ongoing rejection of pharmaceuticalization and their sense of control over their children’s well-being. They do so by positioning themselves as active managers of their children’s care, even as their children experience a range of conditions that may be beyond their control.
Methods
I collected data using in-depth interviews with parents who oppose vaccines. After receiving approval from a university institutional review board, I interviewed 34 parents between 2007 and 2014 who lived in Colorado (29 mothers and five fathers) and who challenged expert recommendations on vaccines for their children, either by opting out completely or by providing consent to some vaccines on a schedule of their own devising. Colorado has one of the lowest rates of vaccination in the United States and one of the highest rates of parents claiming nonmedical exemptions (CDPHE 2015; Staver 2019). The overrepresentation of mothers in this study reflects the reality that women are more likely to have primary responsibility for their children’s healthcare (Ranji and Salganiccoff 2014). All but one parent identified as white, and all but one identified as heterosexual; 29 were married and five were divorced or separated. Among the parents, 11 had graduate degrees, 10 had bachelor’s degrees, eight had some college, and five were high school educated. Ten parents stayed home full-time; 11 worked full-time for wages; 13 worked part-time, helped run family-owned businesses, or were professionals with limited work hours and great autonomy, including a massage therapist, yoga instructor, birth coach, and writer. Ten parents had one child, 12 had two children, six had three, five had four, and one had eight. This sample was relatively privileged, which matches patterns of vaccine refusal described by others (McNutt et al. 2016; Smith et al. 2004; Yang et al. 2016). Reflecting both class privilege and commitment to avoiding medical intervention, about half the parents in this study planned for at least one child to be born outside of a hospital. This is much higher than U.S. national averages: out-of-hospital births represent about 1.5 percent of all births and 2.2 percent of births among white women (MacDorman and Declercq 2016, 2018). Details on the sample are included in Table 1. All names are pseudonyms.
Parent Participants
Some families opted for the tetanus vaccine but not other vaccines. There is not herd immunity protection against tetanus.
I recruited participants using convenience sampling: they were referred by others familiar with the study, by email, or through listservs. Parents who self-identified as “making independent choices about their children’s healthcare, especially around vaccinations” were invited to participate. Once they volunteered and provided consent to participate, I conducted semi-structured, open-ended, in-person interviews. Interviews lasted between one and four hours and were audio recorded and transcribed verbatim. Questions were open-ended and explored a wide range of topics, including parental history, education, employment, healthcare experiences, relationship and family formation, family planning and pregnancy, parenting practices, interactions with healthcare providers and schools, sources of information and care for children’s health and vaccines, the process of coming to question vaccines, and views of vaccination in general. These data are part of a larger study that includes more methodological detail, including the issues that arise when studying parents of similar background who make different choices for their children (Reich 2013, 2016b).
Transcripts were initially coded and analyzed thematically, and then as patterns were identified, I used what Charmaz (2002:678) calls constructivist grounded theory, in which data are collected and analyzed “to learn participants’ implicit meanings of their experiences to build a conceptual analysis of them.” Although not the primary focus of the larger study, examples of parents rejecting some or all vaccines but consenting to other medications appeared in every interview, which invited closer examination. All parents in this study at some point sought allopathic care or pharmaceutical solutions for their children’s ailments, irrespective of their self-described opposition to medications. However, two parents limited their interactions to medical consultations relating to illness or prenatal screening. (Notably, both had one very young child, which might limit opportunities to address illness.) The Findings section presents three cases that are illustrative of broader themes that emerged throughout the data. As I will discuss, parents frequently faced decisions about when to accept medical care, whether during short-lived emergencies, bouts of illness, or routine medical encounters. The selected cases provide examples of varying levels of illness severity, but each necessitated ongoing engagement with medical systems to manage illnesses that were chronic or life-threatening, which allows for clearer illustration of the different contexts of individual, interactional, and institutional structures that shape parental strategies and decisions.
Findings
Across all interviews, parents described why they refused vaccines; often, they rejected claims that pharmaceutical solutions are necessary to prevent illness. Yet, most parents also described using medications strategically when they perceived them as useful. Margaret, a mother of two who rejected all vaccines for her now-adult children, explained when medical care is appropriate: I think medical care’s important for some things. Emergency care, no problem, you know? Surgery for certain things, yes? My son’s had about five, six sets of stitches for being a boy. So there’s a reason—going off bike ramps, playing football, the whole bit—and I totally trust them for that aspect, but preventative care, no. . . . Using drugs and surgery is one of their only—one of the few treatments. Like any time you go to the doctor nowadays, it seems like they just want to write you a prescription.
Like Margaret, Barb, a mother of two unvaccinated children, referenced her conversation with her children’s pediatrician as revealing how doctors rely too heavily on medications to manage illness rather than on efforts to promote health, which she sees as the best path to disease prevention. She recalled, “He said that doctors are trained in medicine, not in health. And I came right back and I said, ‘You know, I asked you a lot of health questions and you gave me a lot of medical answers, and I see why now.’” Barb left feeling more confident that her views were superior to those of physicians who she believed are inadequately trained to support health.
Like Margaret and Barb, all parents in this study made deliberate distinctions between when pharmaceutical remedies are appropriate for their children and when they are not. Parents generally rejected the premise that children are better off with pharmaceutical remedies and that medical management is necessary to prevent illness. Instead, they insisted that less medication is always better. Their stories of acceptance and rejection are woven in descriptions of how they laboriously aim to advocate for their children.
As examples, parents described giving their children albuterol or other inhaled steroids to manage complications from seasonal allergies or asthma, Tylenol for fevers, pancreatic enzymes for digestive problems, prescribed ointments for eczema or fungal infections, or antibiotics for infections. One mother sought out antibiotics after her efforts to treat her toddler’s ear infection with herbs and aromatherapy were unsuccessful, explaining that the infection was, “horrible and miserable for her and I wouldn’t want her to be in pain.” Yet, as she described it, comfort with the decision to seek antibiotics rested on the importance of having waited and tried other options first: “But she was sick for three days before she ended up going to the doctor.”
Some parents who reject vaccines also reject other forms of medical oversight, including diagnostic routines that lead to medication. Katie, a mother of a child with some behavioral challenges, refused to submit to teachers’ recommendations that he be evaluated for autism or other developmental delays. She explained of her son, “He’s really special and that maybe some of these things are gifts, not challenges. So to me it’s like looking at it in a very holistic way and not trying to change him or fit him into a box or label.” She believes doctors are unable to see him as she does, inspiring her to reject their advice: “When I’m talking to a medical practitioner, they don’t address him as a whole person, you know or maybe only as like a diagnosis or potential diagnosis. . . . I won’t even talk to that person to get with them, because I just feel like there are boxes and if somebody doesn’t fit into a box, then people will try to do anything to push them into that box.”
Katie recalled that when she sought services from the local school district for her son, she felt again they wanted to inappropriately medicalize his behaviors and treat them pharmaceutically: “They were concerned because I said he has nightmares and stuff at night and they’re like ‘Have you thought about antidepressant medication for him? You know, maybe he’s got some anxiety and you know issues with socialization, he might be depressed.’ I’m like, he’s 5.”
Yet even mothers like Katie who confidently described rejecting diagnoses, mainstream medical care, and even medical management of childbirth also described times when they sought out pediatric care, medical treatments, and prescriptions. Parents’ rejection of medical management is not categorical, so much as it is contextual, strategic, and reflective of their self-perceived efficacy. These seemingly contradictory choices are worthy of consideration and reveal how parents view themselves as best able to make strategic decisions in managing their children’s health, and how they construct and manage the contextual meanings of medications and pharmaceuticals. Parents repeatedly insisted that they—not doctors—were experts, consistent with research showing overconfidence predicts dismissal of experts (Motta, Callaghan, and Sylvester 2018).
In the larger study, parents described how they most intimately know their own children, understand their children’s unique health statuses and vulnerabilities, and can most accurately estimate risk (Reich 2016b). They described efforts to empower themselves, usually via self-education, to make informed decisions with information coming from books, websites, physicians, other healthcare providers, peers, family members, advocacy organizations, or publications committed to natural living. Illustrating the resonance of the view that parents are experts on their own children, vaccine opponent Jenny McCarthy explained in an interview her decision to avoid vaccinating her son despite scientific evidence that vaccines are safe and necessary: “Who needs science when I’m witnessing it every day in my own home?”
McCarthy, like the parents in this study, argues that individual strategies relying on intuition, individually collected information, observations, and personal decisions are superior tools for healthcare decision-making. These parents see themselves as strategically and deliberately managing their children’s healthcare. Yet, parental care decisions are not developed or executed in isolation. Rather, parental decisions to reject vaccines reflect individually designed goals, interactional pressures, and institutional expectations (Attwell, Meyer, and Ward 2018; Hobson-West 2007).
In discussing the three levels of social organization in which parents make healthcare decisions, I am not suggesting these contexts are discreet or exhaustive categories. In fact, each study includes examples of social structures and organizational practices that inform, support, or undermine individual goals. I deliberately use three cases to show how parents manage ambivalence and account for their decisions to use medications in ways that illustrate the role of contextual and organizational factors. Parents insisted they were in control of their children’s care, even as they relied on doctors to provide information and dispense medication to their children, and as they faced pressures that shaped their personal preferences.
Individual Strategies: ADHD Medications
Many parents noted that vaccines are manufactured by a handful of for-profit pharmaceutical companies, making their safety and claims of necessity questionable. Yet parents may accept medications, also produced by for-profit pharmaceuticals companies, when they see them as necessary or useful to manage daily challenges, in ways vaccines are not. Astrid Jansen is one of those parents. Astrid walks this line between rejection and acceptance of pharmaceuticalization by drawing distinctions in which kinds of medications she chooses for her 7-year-old daughter. She has not fully vaccinated her, arguing that many vaccines are not necessary; at the same time, she chooses to use prescription medications to manage her daughter’s Attention Deficit and Hyperactivity (ADHD) condition.
Astrid generally describes all medical intervention as undesirable: “Surely it can’t be good for you to be—I mean there’s this intuitive piece that says, ‘Is that really good for you to ingest some of those things into your body, really?’ Like I’m not sure about that. And I’m not sure we know what the long-term risks are with those things.” Yet, despite the sense that pharmaceutical consumption is harmful, Astrid seeks out medical care for a range of conditions, albeit with some ambivalence. She believes medical care can help manage risk and optimize health in particular contexts. For example, she described loving the experience of pregnancy, and although she would have “probably preferred not to have as much medical intervention,” she consented to technologies like ultrasounds and prenatal screens because, responding to institutional expectations, she understood them to be required by insurance.
Following prenatal testing, Astrid agreed to be induced 10 days before her due date because she had developed gestational diabetes (a common course to address medical concerns about fetal size), but she complained about other interventions, like the placement of an intravenous (IV) catheter in her arm to allow for easier access in case of complications. “I would have preferred not to have an IV. I just didn’t see any reason why that would be necessary for me to [put one in], but they really pressured me to do that.” Similarly, Astrid described her preference to avoid an epidural during delivery, but she consented to one to manage strong contractions from the induction. “I would say I hoped also not to have the epidural—but I did. I think, though, if they hadn’t induced, I think that was part of the problem, that they had induced and so—so I wasn’t able to breathe through the contractions the way I’d hoped.” Although Astrid prefers in the abstract to avoid interventions, in specific decision-making contexts she accepts that medical interventions have utility.
In accounting for the decisions she made for her daughter after birth, Astrid described feeling distrustful of vaccines, which she explained carry “all kind of risks,” including “extreme symptoms like autism,” which she fears may arise from exposure to chemicals in vaccines. Despite this discomfort, Astrid believes some vaccines are necessary, and she opted to give her daughter some of the infant series, delayed by several months, because she was sending her to a childcare center where risk of infection would be higher than when her baby was home.
Astrid laboriously considers which vaccines are necessary to prevent disease risk and which she can confidently skip. Similarly, she rejects most medical interventions but consents to medicating her 7-year-old daughter with Adderall to treat her ADHD. She said her daughter’s ADHD manifests with a lack of impulse control, which carries the possibility of injury: “I think for right now her impulse control puts her at risk of harming herself and that is where I’ll step in and say, ‘Okay, we better do this.’”
Despite her disapproval of pharmaceutical products, Astrid accepts that Adderall improves her daughter’s behaviors, serving as a tool to optimize her health: “If there hadn’t been that direct impact, we would not be doing this. Yeah. I’m not above, you know, better living through chemicals.” Yet, this sense of relief is intricately tied to discomfort in knowing that she is directly supporting the pharmaceutical industry: “It is hard for me because every time I hear that commercial of like Pfizer makes however much money a year by medicating your child or whatever it is.”
Astrid differentiates necessary medications, which include those that protect her child from potential harm presented by her lack of impulse control or against particular diseases she might encounter, from those she views as unnecessary—including other recommended vaccines. In discussing particular vaccines, Astrid communicated an idealized view of medical care. Like many parents who reject vaccines, she envisions individual parents as responsible for evaluating risk and making informed decisions, rather than following advice from providers that seems generic (Hobson-West 2007). This is most evident in Astrid’s description of resisting the vaccine against Hepatitis B, a disease spread through “infectious blood, semen, and other body fluids from having sex with an infected person, sharing contaminated needles to inject drugs, or from an infected mother to her newborn” (CDC 2009). Pointing to the behavioral nature of the risk, Astrid explained, All of the ways that you get Hep B are risky behaviors, so the child who’s gonna have risky behaviors, it seems like a good opportunity for the parents to say, “Okay here are your choices. You can—certainly you can you can have sex or whatever they, all the behaviors are. You can do drugs. Know that this is a risk and if you want to have that shot, we need to talk about that.”
In thinking of her strategies, Astrid sees risk prevention as presenting opportunities for empowerment. She embraces a sex-positive ethos and commitment to her daughter feeling empowered in matters of bodily autonomy. Astrid’s strategy relies largely on maintaining open lines of communication and “honest discussions, too.” She explained, “Do I want to hear that my 12-year-old is having—she wants to have sex? No. No, I don’t want to hear that. But, yeah, I do, you know? I do want to hear that because I want to deal with it. I want to have that discussion, whatever that is, even if it’s really uncomfortable.”
Focusing on individual-level strategies, Astrid insisted her daughter “needs to advocate for what the things are that she needs,” which will include choosing which vaccines she wants. Astrid plans to explain why she chose to receive the Hep B vaccine for herself, and “then that will be something that then she has to make the decision to do.” This vision of a future empowered adolescent decision-maker does not match Astrid’s description of the same child as lacking impulse control for which medications are necessary. Yet Astrid, who herself has been diagnosed with ADHD, does not believe these thoughts are contradictory. In thinking about risk, she draws on her own embodied knowledge and sees that forbidding particular behaviors is unlikely to be successful: I had risky behaviors earlier I think than a lot of kids do and she has—she does have a diagnosis of ADHD, as do I, and so I think that’s something that goes along with the territory and it’s something you have to be talking about early and talking about a lot and in a reasonable way. And you can’t have it be like, “you can’t do this” because it’s not gonna work, it’s just not.
Astrid treats medical technology as conditionally necessary, depending on individual responsibility and circumstance, and to be chosen for one’s self. As a mother, she imagines eventually cultivating her child into an informed and empowered healthcare consumer (Lareau 2003). Until then, she insists she is best able to weigh risk and make strategic choices in her child’s best interests. This may seem incongruous with her precise adherence to the ADHD diagnosis and treatment regimen. Yet, Astrid maintains she is in control of her daughter’s care and actively manages risk and choice, accepting medical diagnoses and treatment of ADHD while rejecting vaccines.
Interactional Negotiations: Managing a Seizure Disorder
Each parent who refused vaccines in the broader study communicated a commitment to individualized management of their children’s health, similar to Astrid’s explanations. Yet, some parents found themselves in negotiations with organizational actors, like school personnel and healthcare providers, who challenged their autonomy. These interactions often reflected competing and incongruous beliefs about risk, necessity, and expertise. This tension is perhaps most visible in Carolyn Kalman’s description of her decision-making process to reject all vaccines yet eventually seek anti-seizure medications for her teenage daughter who had developed epilepsy at age 5 years.
Carolyn stays home full-time with her three children, homeschooling them until recently. She rejects all vaccines and virtually all medical interventions; she instead prioritizes individual efforts at healthy living. Drawing a contrast to her hard work, Carolyn disapproves of people who accept vaccines, which she believes remove personal responsibility for health: “If you think that you’ve got a band aid called a vaccination, then you’re gonna live like the dickens and not worry about what you put in your mouth and how fat you are. . . . So then you’ve got no responsibility. ‘I can do whatever I want because I’ve been vaccinated,’ so you think. You live this false premise of ‘I don’t have to take care of myself.’”
Despite efforts to carefully manage her children’s health, Carolyn’s oldest child developed seizures. Unlike the more common image of violent seizures, Rachel’s seizures initially appeared to be daydreams. However, by age 12, the seizures progressed into more frequent and pronounced grand mal seizures. Her seizures, Carolyn explained, have never resulted in her not breathing, usually last 15 seconds, and then require another 30 minutes for her demeanor to return to normal: “It’s like the rebooting of the computer . . . they were very fast and then she would kinda fall asleep a little bit. And then she’d come back and go—and feel great.”
Soon after Rachel’s diagnosis of epilepsy, Carolyn and her family prioritized their overall health in hopes of improving Rachel’s condition: “That has been our big drive, to try and make sure that she’s the healthiest person we know.” Yet, even as Carolyn shifted her family’s diet and lifestyle, consulted with others she trusted whom she described as experts on natural living, and used all the health-promoting tools within her control, the seizures continued: “It was very hard . . . we did everything. We went all over America trying to find different [options].” Nonetheless, Carolyn was unable to control the seizures.
Although she admits her laborious efforts were ineffective in managing the seizures, Carolyn remained critical of medications. She compared Rachel’s seizures, which she perceived as not life-threatening and as not causing long-term harm, to children with unbreakable longer seizures, which are more dangerous, and which she saw as directly tied to medications: “They’re all medicated children and these people are having breakthrough seizures because they’re—they’re doing something to make the seizures break through, so it can be other medications or whatever. So that is more of a drug-induced seizure [in comparison to Rachel], where she was just having brain-induced seizures.” Despite no distinction within medical research between drug-induced or brain-induced seizures for epilepsy, this distinction is powerful for Carolyn and supports her view that prescription medications worsen health, even exacerbating a disease like epilepsy.
Yet Rachel’s seizures continued. Around the same time the seizures worsened, Carolyn enrolled Rachel in a private religious school nearby, a change after years of homeschooling. This presented new challenges. If Rachel had a seizure at school, one of her parents would show up immediately. To make sure they could be close, they volunteered at the school as often as possible. Carolyn said that because her goal was to make sure Rachel could continue to have positive interactions in school and with peers, she was motivated to remain close to support her daughter: “We didn’t want her to think she had a handicap, so she went on all the field trips, she played all the sports. I was just there.” Carolyn adds confidently of her and her husband’s presence, “We were there at everything.”
Carolyn’s choice to reject vaccines became an issue at the school when an outbreak of rubella was reported. In collaboration with the county health department, the school arranged to vaccinate anyone missing the MMR vaccine against measles, mumps, and rubella. Carolyn refused the vaccine for her children and was quarantined in her house until the outbreak subsided. Carolyn recalled the teacher apologetically suggesting the quarantine was unnecessary, which emboldened Carolyn to show up with her children at a planned school field trip that week. She recalled, “So I went to the field trip and there was two nurses that were mothers of the kids in the class and so they went and called the health department to send me home. And when they did, they tacked something on my door that said we’re quarantined for a week.” Carolyn saw this gesture as an effort to humiliate her and force her to acquiesce to state agencies promoting vaccines. “They knew themselves that I was not any more contagious than anybody else. It just—we did not comply, so we got spanked.”
Carolyn continued to refuse vaccines, which she imagined would only worsen Rachel’s health. However, Rachel’s seizures continued. With nothing else working and exhausted by efforts to manage what she describes as up to “100 petit mals a day,” Carolyn began thinking that medications might be necessary. Noting Rachel’s inability to fully participate in interactions around her, Carolyn explained, “It got to the point where she was not functioning in life.” However, her husband disagreed about starting medication.
Neurology cannot say with certainty why some children develop seizures and others do not, a source of frustration for parents. In searching for an explanation of why their oldest child—the only one born in a hospital with the use of Pitocin and monitors—was the only one to develop a serious health problem, Carolyn often considers the possibility that routine medical interventions during delivery contributed to her condition: “They get the little—they get the little ones. With Pitocin, yes, and induced labor where they do the heart monitor through the scalp. I think they stick them in too far. I think they nick the brain. I believe it with all my heart.” Carolyn also considers the fact that Rachel fell as an infant, which might have caused some kind of damage, but she feels strongly that something harmful occurred during birth to cause some kind of brain damage: “She also had a floating eye as an infant . . . so there’s obviously something that happened to her brain at birth. And I don’t doubt that one iota.”
Even as she considered the possible ways medical interventions caused Rachel’s seizures, Carolyn recognized her family needed help controlling them, illustrating the ambivalence between medical management and parental control. Despite their discomfort with allopathic medical practitioners, Carolyn and her husband set out to meet with neurologists. In doing so, they aimed to find a solution while also maintaining their sense of themselves as experts on Rachel’s needs. These interactions were significant in shaping their ability to accept medication.
Carolyn described the first neurologist with whom they met as overly dismissive of their concerns about the toxicity of anti-seizure medications and as seemingly frustrated with their resistance. Rather than working to allay their fears, he offended them when he spoke over them to their teen daughter directly, advising her that she would soon be 18 years old and able to make her own healthcare decisions. Carolyn recalled him telling Rachel, “Well, you know, you can do whatever you want.” She felt disrespected. “I mean, we’re sitting there and he’s saying, ‘You know, Rachel, you can do whatever you want. You don’t have to listen to your parents.’”
As she remembers that appointment, the neurologist dismissed their sense of expertise relating to their child, and they left feeling further alienated. Although they saw themselves as open to medications as a short-term tool, they were hesitant to view medications as a long-term commitment, a view this doctor did not seem to share. This interaction and their belief that the neurologist saw them as bad parents who were resistant to helping their daughter led them to leave—without a solution to their troubles, without answers they wanted, and without a prescription or treatment plan.
Carolyn grew increasingly frustrated with her inability to prevent seizures, while her husband remained suspicious of medication. What Carolyn calls “a battle” between them was mediated by finding a neurologist they felt they could trust and who they believed respected their perspectives and worked with them to find solutions. Carolyn said admiringly, “[He] was a very educated man who was not—he would give you facts; he was not there to try and convince you. He was just, ‘These are the facts and this is what’s going on.’ And [he] worked with us—we loved him to death.” Highlighting the importance of this interaction in helping them make this decision, and their expectation that they should be seen as equals, Carolyn’s husband added, “What made us like him—he was a nice guy, he respected us. He still spoke what he thought was true, but because of that, we said, ‘Okay, we’ll go with this guy.’ We believe him. It’s all about relationship. It’s all relationship.”
Carolyn and her husband felt they were experts on their children’s health and illness and reiterated that despite clashes with providers, they have not ceded control of their daughter’s care. For example, after accepting a prescription for anti-seizure medications from the second neurologist, Carolyn raised concerns about the ingredients in the drug, insisting that Red Dye 40 in the medication could trigger Rachel’s seizures. Although the connection between Red Dye 40 and seizures is not one commonly accepted by medical practitioners, it is widely discussed online among parents. 3 The first neurologist had dismissed this concern; in contrast, the second neurologist, whom she saw as more respectful of her expertise, supported her efforts to avoid dyes. Finding a compounding pharmacy “that would give me the ingredient, not the color coating,” Carolyn noted, was challenging.
In many ways, Carolyn’s story makes visible the role of class. She and her husband expected to be treated as equals by healthcare providers. They could shop for providers they liked and were able to travel distances and pay more to seek out medications in the form in which they believed was safest. All of this allowed them to maintain control. Carolyn remained committed in interactions with providers to overseeing her daughter’s care and reworking pharmaceutical use to manage both her ambivalence and her sense of expertise.
Since beginning medications four years ago, Rachel has not had a seizure. Carolyn admits the medications have helped, but she also assigns credit to changes she and her husband have made in Rachel’s care. Her husband elaborated, “We changed some things in her chiropractic protocol, too, and I think that had a lot to do with it. . . . So a little bit of everything. Now the seizures didn’t stop alone on medication, but that, plus what we were doing now, gave her a break.”
Medications and her improved health have given Rachel new independence. This too presents a challenge to her parents. As Rachel’s father explained, “So, for the last four-and-a-half years no seizures, but we don’t have the same girl she used to be.” He elaborated on how her new freedom has led to new challenges: “So we’ve had to—it’s been hard. . . . It’s like, no seizures, 18-year-old. Now I’m rebelling . . . we had the teenage years in one year.” In attributing Rachel’s improved health to the non-pharmaceutical care they oversaw, Carolyn and her husband reiterated their control over her well-being—control that their healthier and more independent daughter may be challenging. Even as the school and the local health department aimed to force vaccination, and the school environment made Rachel’s seizures intolerable, Carolyn and her husband continued to point to the ways they retain independence, vigilance, and autonomy. The context of interaction with a sympathetic provider made it possible for them to accept seizure medication while continuing to feel in control.
Managing Institutional Insistence: Childhood Cancer
Much of the discourse of individualized management of health communicates that wellness is a moral imperative and that illness results from failures to make healthy lifestyle choices (Crawford 1980). Parents who aim to meticulously manage their children’s health are often baffled when their children become sick, despite good nutrition, healthful living, and good parenting. They face both an inability to control health and limits on their power to treat illness. Bob Sanders, a chiropractor, and his wife Beth, a registered nurse (RN), faced these issues when Hope, their daughter, developed leukemia. As they worked with medical providers to try to cure her cancer, they also faced new challenges to their autonomy over healthcare decisions, including the threat of state action.
Bob and Beth opted out of vaccines for their children. Bob remembers that when they became parents in the early 1980s, there was little to read and few sources about the risks of vaccines. He recalled the process of reaching the decision to opt out: “There wasn’t much out there. It was just that knowledge, that how could putting these types of foreign substances in your body ever be a good thing?” As a result, none of his four children received vaccines, including his youngest child, Hope. Bob and Beth looked to nonmedical interventions whenever possible and aimed to care for their children through natural remedies. Despite their efforts to keep their children well, their youngest became critically ill.
Bob’s initial instincts were to treat her cancer with the tools he knew as a chiropractor and supporter of holistic care. Yet, he understood how that choice would be controversial and potentially sanctioned: “You know, once that diagnosis is entered into the system, had we elected not to go standard medical care, they would have taken her; social services would have taken her.” Additionally, Beth, who supported her husband’s views on health, was uncertain holistic care was adequate for leukemia. Bob recalled, “With my wife being an RN, she really wanted to do whatever was available, even though it was chemo and against what we believe.”
Distrustful of chemotherapy, an indisputably toxic intervention, Bob remembers feeling unsure of what to do. Yet even with that sense of uncertainty, he recalls feeling confident that he was well equipped to determine the right outcome: “You feel sorry for the people who don’t know anything. Of course they’re gonna automatically do what the doctor or the social workers or the government tells them to do because they don’t have the knowledge base that they need to make an appropriate decision.” Seeing himself as more knowledgeable than other parents in the same situation, he was certain he was more capable than most parents of evaluating risk and making decisions for his daughter, including rejecting medical advice.
In distinguishing himself from others, Bob identified his skills as enabling him to better challenge experts. Yet, he was also aware that he was thrust into a situation potentially beyond his control, with strong pressure to comply with medical recommendations, including the possibility of legal sanctions that could include loss of custody or criminal prosecution: “You know, I’m gonna take the responsibility of putting her life at risk, being watched, you know federally. And if something would’ve happened. They [could say], ‘Well, we’re gonna hold you accountable.’”
Apart from these perceived external pressures, Bob accepted that the treatment protocol suggested by oncologists was the best option in a terrible situation. He clarified, “As a parent—and not as a chiropractor, not as a doctor, not as a healthcare provider, not as a practitioner—as a parent, if she would’ve died, and you didn’t know that you’d at least done everything that you possibly could have that was available, I don’t know how you’d live with that. To keep her home and do nothing?”
At the time of Hope’s cancer, pediatric cancer treatments were more limited than they are today. Lacking reliable options in his home state and recognizing they needed to follow mainstream treatment recommendations, Bob and Beth opted to bring their then-2-year-old to Seattle for treatment at a hospital Bob called, “the best of the best.” They consented to her care, but felt a sense of disbelief as they watched chemotherapy ravage Hope’s tiny body. Bob hated the treatment, which poured toxic chemicals into her toddler veins. Yet, he also became aware of the limits of his own knowledge as he tried to craft an alternative treatment strategy. “Even with my studies, I didn’t feel like I knew enough to put her life at risk, even though chemo does the same thing.”
Hope’s cancer went into remission. However, three years later, it returned. Lacking other options, she needed a bone marrow transplant. Despite having three siblings, two parents, and a large extended family, doctors could not find a known donor who was a good match, but they did locate an anonymous donor. Nonetheless, Bob recalled feeling overwhelming resistance to the bone marrow transplant process. “I didn’t want to do any of it. I didn’t believe in any of it. I didn’t have confidence in any of it. Because I know exactly what chemo is designed to do . . . they take them to the end of death, kill off everything, and then hope it grows back the right way. I mean that’s what it does.” Detailing the brutality of chemotherapy and radiation before bone marrow transplant, Bob elaborated, “You have no white cells. None. Zip. If they find them they keep going until they don’t find them on the slide. With the blood draw, you just don’t have any. So how anyone ever survives that is beyond me.”
Initially, Hope suffered graft-versus-host disease, a painful condition where the new healthy donated cells attack the recipient’s body as though it were an invading organism; in doing so, the cells launch an immune response against their own new body. “That almost killed her,” Bob said of the three months in the hospital following transplant. Yet, Hope made a full recovery.
All children with cancer are automatically enrolled in a unified national research study when they receive treatment. First launched in 2001, this national registry collects information about treatment protocols and outcomes of pediatric cancer care to identify best practices. Because oncologists at each pediatric hospital see few cancer patients, the registry compiles information to create power in studies so that practitioners can craft empirically informed treatment protocols based on data and outcomes. Information gained from these registries are credited with standardizing care and transforming survival rates from childhood cancers, from less than 10 percent in the 1950s to nearly 80 percent today. The registry also makes it possible to follow cancer survivors into adulthood to better understand their long-term health needs (National Childhood Cancer Foundation 2013).
Bob understands the importance of the registry and the protocols oncologists follow. He accepts that the bone marrow transplant and toxic medications cured Hope’s cancer. Yet he claims responsibility for getting her through the aftermath of the transplant and facilitating her recovery by circumventing the medical team. Initially, Bob imagined partnering with Hope’s treatment team and asked if he could supplement her care; he was told he could not. As he understands the reasoning, “It would mess up their protocol, possibly influence protocol. It was a no-no.” He describes the oncologists’ perspective as lacking understanding and certainty. He recalled them telling him, “We’re totally anti- any kind of supplementation, because we can’t then determine why she is or isn’t reacting to things a certain way. It could neutralize, we don’t know. But since it could neutralize something, somewhere, she can’t do it.”
Rather than trusting the doctors to make all of her care decisions, Bob explained that he diligently (and covertly) provided his own forms of care: “So here I am, believing the only reason that she was still alive is because during the course of her transplant, [she was] being [chiropractically] adjusted every day, and [I was] controlling her diet, bringing in supplements, even though they didn’t know that that was what was happening, because they wouldn’t allow it.”
Bob insisted that while he respected the expertise Hope’s oncologist had over cancer, he did not believe the doctor understood other wellness practices: I liked him, but you know, you gotta understand that the same people were saying diet has nothing to do with health and with recovery. She’s gonna eat hospital food, you know. That by itself speaks for itself, if you’ve ever been there.
So Bob augmented her care without permission, knowing he was violating institutional rules and may have undermined research protocols and data. He admits his care was limited by the hospital care structure, but he remains certain that his efforts, alongside prayer, are what saved his daughter’s life: All 14 others transplanted in the 15-person window of the month that she was transplanted [died]. There’s no other basis [for her survival] because she was such a poor match. There’s no other reason besides [the supplementation] and our faith combined.
In identifying his complementary treatment as the reason Hope survived, Bob reiterated his control over her care and his expertise. He does not regret consenting to the chemotherapy, radiation, or bone marrow transplant and believes he followed doctors’ recommendations for her treatment on those fronts. Yet, he found ways to contribute to her recovery that he believes supported rather than undermined it and insists he was successful. His view is validated by his recollection of her treating physicians who he says came to him several months into Hope’s recovery to confront him: Well, we know you’re doing it anyway, and it’s not that we’re not ok with that, but it’s time to finally go ahead and tell us everything you’re doing so we can document it. We don’t believe it’s gonna help, we don’t believe it’s gonna hurt, it’s just, we have to record it, because we know you’re doing it. And so let us get it in the record.
Bob recalls this confrontation as “just kind of a smiler,” as he feels certain that “the only reason they’d be bringing it up is because she was doing better in a different way than their average individual.”
Like most parents in this study, Bob insisted that being an expert on one’s own child does not extend to knowing what is best for others. He explained that while he began as more of a hardliner against medical intervention, preferring to believe the body can handle and fight illness when necessary, he no longer thinks that is the best option for all people at all times. Having passionately objected to what he calls, “the whole spectrum of vaccination, immunization, more so, the medication antibiotic drug route,” he said he now recognizes points of necessity for medical intervention when a person is seriously ill. Bob explained, I’ve been there, I know how painful that was to even have to decide to go with the chemo! Because I don’t want that to ever be necessary for someone. But that’s when my whole thing shifted in that no one will ever convince me that there aren’t exceptions and that there aren’t instances where in crisis, those types of things become necessary.
Bob’s views after enduring Hope’s life-threatening illness highlight the ambivalence existing within pharmaceuticalization (and its resistance). Throughout the story of Hope’s treatment, Bob referenced both his discomfort with cancer treatment protocols and his sense of efficacy in contributing to her care. Yet, the possibility of legal coercion was ever-present as well. In addition to shaping his consent to treatment, medical policies backed by legal enforcement shaped other decisions. For example, the hospital required his entire family to receive a flu vaccine before Hope could return home after the transplant. Despite having rejected all vaccines, he complied, understanding she would not be released without it. Similarly, he consented to chemotherapy, understanding that social services could take custody of his daughter if he did not. In recognizing the structures that coerced some decisions alongside his own sense of expertise and skill, Bob found ways to moderate his opposition and remain in control of the consent process, taking the parts that were necessary and melding them with his own efforts to both yield to institutional expectations and maintain a sense of control.
Discussion
Each story here—as well as those shared by other parents in the broader study—illustrates parents’ efforts to manage their children’s health themselves, which at times led them to seek help from mainstream providers who offer access to pharmaceutical interventions. Each parent voiced contempt for pharmaceutical companies and the increasing medicalization of children’s bodies and lives, and yet when they felt it was necessary, they sought out what Astrid called “better living through chemicals.”
Parental healthcare strategies exist within individual, interactional, and institutional contexts that shape decision-making. In some cases, parents respond by accepting medical diagnoses and treatment plans and then making them their own. In other cases, parents claim partial acceptance and explain how they—not doctors—ultimately manage care. For some parents, interactions with doctors, schools, hospitals, or even public health or social service agencies coerce adherence to medical system recommendations. Still, parents find space to craft their own strategies and claim partial ownership of processes they would not necessarily choose. In each of these contexts, access to resources, including income, education, time, and cultural capital differentially position parents to challenge (and selectively accept) medical authority and pharmaceuticalization—as well as vaccines.
In these narratives, parents voiced ambivalence about the larger meanings of pharmaceutical intervention, but they notably did not disagree with the diagnoses that their children were in some way unwell. Rather, they articulated their process of managing their children’s health as one that places them in the center of decision-making, despite their ambivalence about the intervention. Consent to professional care becomes a strategy of their own crafting in which they selectively cooperate or undermine expert recommendations—with diet, hand-compounded drugs without dye, complementary care, or vaccine refusal—as active agents committed to their children. These health issues—ADHD, epilepsy, and cancer—forced parents to solve health challenges their children faced and revealed how their individual strategies were shaped by interactional and organizational factors.
More generally, parents’ stories of pharmaceutical ambivalence, which manifested as vaccine refusal alongside consent to other pharmaceutical interventions, illustrate processes in which all parents are engaged. Decisions about birth, management of indigestion or colic, learning disabilities, ear infections, and emergency room visits all demand that parents who appear to passionately reject medical intervention strategize their engagement with healthcare systems and processes of pharmaceuticalization. Sometimes, these parents reject expert advice; other times, they accept the prescriptions offered. Even as parents at times reluctantly cede control to experts when their children’s issues exceed their abilities, they nonetheless aim to maintain some semblance of control as they actively strategize the use of these tools.
Sociologists have pointed to the shifting processes by which individuals accept medical definitions of their bodies, including marketing from pharmaceutical industries, professional claims of knowledge, information about genetics, and increasing focus on risk mitigation through personal behavior. Changing notions of the body have led to greater consumer demand for optimization, which represent economic shifts that shape consumption (Clarke et al. 2003; Conrad 2005). As Clarke and colleagues (2003:166) suggest, technoscience and human action are co-constitutive, with sciences and technologies “made by people and things working together.” There is an accompanying need to understand the ambivalences that exist alongside these shifts.
A deeper understanding of these priorities, processes, and ambivalences could be instructive to providers who work with families and those who seek to improve public health participation, particularly around vaccines. First, parents who express disdain for medication while also seeking out treatment are responding to myriad social pressures that advise good parents to be critical consumers who advocate for their children. As providers view each decision in isolation, parents’ strategies appear confused, illogical, and easy to dismiss. Seeing how these decisions are interconnected can help build treatment relationships with parents across—and despite—their ambivalences.
Second, public health advocates would benefit from considering vaccines as not distinct from other pharmaceutical products, but on a continuum of pharmaceuticals offered to manage children’s bodies. Given the community benefits of vaccines and mechanisms of enforcement unique to vaccines, it is easy to see them as fundamentally different. This risks misunderstanding how parents see vaccines as a manifestation of pharmaceuticalization and make decisions based on that view.
Finally, healthcare systems would benefit from providing space to acknowledge ambivalences that arise as parents aim to remain autonomous in managing their children’s care, even as they face conditions and contexts that exceed their individual control. Parents often narrate their healthcare decisions in ways that make them sound like empowered consumers rejecting professional input. Yet, in examining the larger stories of their healthcare choices, there is significant variation, with parents at times accepting intervention, at other times rejecting it, but each time, making the choice their own. Parents do so with individual systems of meaning that aim to optimize their children’s health; in interactions with healthcare providers, teachers, and peers; and even with insistence from institutions and government agencies. Recognizing these possibilities holds promise for building partnerships that can support children and families in better health.
Footnotes
Acknowledgements
The author is grateful to Laura Carpenter, Joanna Kempner, Rene Almeling, and Jonathan Wynn for comments and suggestions, to the editors and anonymous reviewers for detailed and thoughtful comments, and to Linda Blum for encouragement years ago to write these stories.
