Social Capital and Stigma Management Among Mothers Who Refuse Vaccines Jennifer A

Social Science & Medicine xxx (xxxx) xxx–xxx Contents lists available at ScienceDirect Social Science & Medicine journal homepage: www.elsevier.com/locate/socscimed “We are fierce, independent thinkers and intelligent”: Social capital and stigma management among mothers who refuse vaccines Jennifer A. Reich University of Colorado Denver, United States ARTICLE INFO ABSTRACT Keywords: Despite measurable benefits of childhood vaccines, mothers with high levels of social privilege are increasingly U.S. refusing some or all vaccines for their children. These mothers are often clustered geographically or networked Vaccines socially, providing information, emotional support, and validation for each other. Mothers who reject vaccines Motherhood may face disapproval from others, criticism in popular culture, negative interactions with healthcare providers, Social capital and conflicts with people they know, which serve to stigmatize them. This article uses qualitative datafromin- Stigma depth interviews with parents who reject vaccines, ethnographic observations, and analyses of online discussions to examine the role of social capital in networks of vaccine-refusing mothers. Specifically, this article explores how mothers provide each other information critical of vaccines, encourage a sense of one's self as empowered to question social expectations around vaccination, provide strategies for managing stigma that results from refusing vaccines, and define a sense of obligation to extend social capital to other mothers. In examining these strategies and tensions, we see how social capital can powerfully support subcultural norms that contradict broader social norms and provide sources of social support. Even as these forces are experienced as positive, they work in ways that actively undermine community health, particularly for those who are the most socially vulnerable to negative health outcomes from infection. 1. Introduction sanctions (Reich, 2014). With higher levels of income, fewer time ob- ligations, and more economic and informational resources with which The phenomenon of parents refusing some or all vaccines for their to seek and provide care, they are best situated to manage illness, children has increasingly received public attention in the U.S. This is lengthy quarantines, or missed work opportunities that might result driven by the reality that many vaccine-preventable diseases are re- from exposure to vaccine-preventable diseases than are families with curring in higher numbers and are linked to the rise in the number of fewer resources. children who are intentionally unvaccinated (Constable et al., 2014; Maternal willingness to delay or reject some or all immunizations Phadke et al., 2016). Vaccine refusal emerges from diffuse fear of un- for their children, which I reference collectively as vaccine refusal, also known long-term health risks that seemingly require consumer vigi- clusters geographically and socially. Within those networks, children lance and represent distrust of experts and regulatory bodies (Faasse are as much as twice as likely to be missing key vaccines than are other et al., 2016; Hobson-West, 2007; MacKendrick, 2018). In examining children (Lieu et al., 2015), though it is unclear causally whether vac- which parents reject some or all vaccines for their children, particular cine refusal results from networks or parents with these views seek out patterns are visible. First, women are disproportionately responsible for these networks (Chung et al., 2017). Belonging to a network with others children's healthcare decisions and are most engaged in discourse who have higher levels of education may influence the sources and challenging vaccines (Ranji and Salganiccoff, 2014; N. Smith and range of health information members seek (Song and Chang, 2012) and Graham, 2017). Second, mothers who deliberately refuse or delay an increased willingness to seek out certain ways of conceptualizing vaccines are most likely to be white, college educated, and wealthier (P. children's health and sickness (Liu et al., 2010). J. Smith, Chu and Barker, 2004; Yang et al., 2016). Third, they tend to Social capital, the “resources embedded in a social structure,” can be networked with other mothers who also distrust of vaccination be “accessed and/or mobilized in purposive actions” for individual (Brunson, 2013; Onnela et al., 2016). These mothers have time and benefit (Lin, 2002, p. 29). Its utility is contextual, where actors may find resources with which to gather information, customize healthcare and social capital powerful in some situations and useless in others nutrition choices, and buck public health law without fear of formal (Coleman, 1988). From an actor-based perspective, individuals or E-mail address: [email protected]. https://doi.org/10.1016/j.socscimed.2018.10.027 Received 26 September 2017; Received in revised form 21 October 2018; Accepted 29 October 2018 0277-9536/ © 2018 Elsevier Ltd. All rights reserved. Please cite this article as: Reich, J.A., Social Science & Medicine, https://doi.org/10.1016/j.socscimed.2018.10.027 J.A. Reich Social Science & Medicine xxx (xxxx) xxx–xxx communities may invest and accrue resources through participation in resulting stigma. Rather than focusing on health outcomes, I use qua- networks (Lin, 2000, 2002). which can be particularly valuable for fa- litative data to elucidate the processes by which mothers who refuse cilitating opposition or expressions of dissent (Coleman, 1988). They some or all vaccines access social capital as they gain informational, can operate, as they do for vaccine refusing mothers, at times through emotional, and appraisal support from networks for their position and formal organizational membership or more informally through com- in opposition to those who disapprove. Notably, these women who are munication in person, or online (Ellison et al., 2007; Ostertag and Ortiz, racially, educationally, or socioeconomically privileged in some con- 2017). Online communities, particularly those used by mothers, pro- texts are diminished in others. I first show how mothers create, provide a virtual place in which “users interact, often daily, to help and mote, and share information to define themselves as experts on their check up on one another” and “are promoted as a place to find support children and on vaccines. These claims of expertise serve to validate and information” (Drentea and Moren-Cross, 2005, p. 924). They in- their choices and increase their claims to social capital in their net- clude other mothers who possess similar levels of social status and ac- works. Second, I demonstrate how they rely on networks of similar cess to resources. mothers for resources to combat stigma. Third, I show how networks Resources that shape individual well-being—both material and provide resources with which to manage stigma in interactions with emotional—flow from social networks (Carpiano, 2006; Kawachi et al., outsiders. As they craft their shared understandings of disease and 1997), with members’ social connections, social ties, and influence vaccines and challenge opponents, they articulate an obligation to providing social capital to other network members (Lin, 2002; Song and support other vaccine-refusing mothers, and in so doing, grow their Chang, 2012). Networks often provide social support, including emo- network. I conclude by considering the challenges networks that dis- tional support, which may offer empathy, sympathy, and shared sense tribute social capital in opposition to vaccines present to public health of understanding; it may also offer appraisal support, which provides efforts. feedback relevant to self-evaluation, self-improvement, or affirmation for the appropriateness of acts. More instrumentally, social networks 2. Methods may offer informational support, including “advice and information leading to a solution to problems” or actions (Drentea and Moren-Cross, I collected qualitative data during in-depth interviews with mothers 2005; Ferlander, 2007, p. 116). Networks that support vaccine re- who refuse some or all vaccines; through ethnographic observations at fusal—in-person or online—are often self-reinforcing as members share community events and national conferences of organizations (detailed information to facilitate action (Coleman, 1988), like encouraging below); and from analysis of online parenting forums and sites where others to question vaccine safety and necessity (Kata, 2012; Sobo et al., discussions of vaccines were common. These data came from a larger 2016) or challenge legal or social requirements to vaccinate (Reich, study for which data were collected from 2007 to 2014 (Reich, 2016). I 2018; Tangherlini et al., 2016). Vaccine refusal in many ways re- interviewed 28 mothers who live in Colorado who either opt out presents an “opting in” to a social group (Attwell et al., 2018; Sobo, completely or provide consent to some vaccines on a schedule of their 2016). As Sobo (2016, p. 345) explains, vaccine refusal “often serves as own devising. Colorado has among the lowest rates of vaccination in a declaration of identification with the social setting of import tothe the U.S. with among the highest rates of parents opting out of vaccines individual.” Accessing this network and building mutual trust with its (CDPHE, 2015; Draper, 2015). None of these mothers were members of members also provides access to social capital. In contrast, social dis- the online communities observed and only one of the 28 attended

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