Stigmatized for Standing Up for My Child: A Qualitative Study of Non-Vaccinating Parents in Australia

"Epistemically, we approach the research with a public health orientation accepting the overwhelming evidence that the benefits of vaccination far outweigh the risks. However, we also assume there is value in understanding the lifeworld of non-vaccinating parents, and that these parents should be afforded respect..."

A decision to resist social expectations by forgoing childhood vaccination carries both health and social risks for parents, their children, and the community. One such risk is the experience of intense forms of stigmatisation. The broader community often regard non-vaccinators as problematic and dangerous, effectively "othering" vaccine-refusing parents. In Australia, a combination of this type of negative discourse, strong public support for vaccination, and political will underpinned a policy change at both state and federal levels that saw removal of philosophical exemptions from vaccination and a tightening of medical exemptions. This paper sought to understand the lived experience of non-vaccinating parents in Australia.

As research reviewed here shows, scholars have characterised stigma as arising from five interrelated components: (i) labelling (allocation to socially selected categories that signify a salient difference from the social majority); (ii) stereotyping (associating the labelled person with undesirable characteristics); (iii) separation (application of the undesirable label "other" to the stigmatised person or group); (iii) status loss (devaluation of those who are labelled and othered in the social hierarchy); (iv) discrimination; and, ultimately, (v) exercise of power by the social majority, as a result of the preceding processes, over the "othered" group.

The discrimination experienced by the stigmatised generally takes three forms: (i) direct (e.g., avoiding a person due to their race), structural (e.g., meeting in places that the stigmatised group cannot access to prevent them participating), and (iii) a form of modified labelling where people see that a negative label has been applied to them by others and anticipate they will be viewed by others as somehow deviant or defective, modifying their social behaviour as a result (e.g., stigmatised people avoiding social contact with "normal" people). It is recognised that stigmatised groups form social, often self-advocating networks of their own.

With these concepts in mind, the researchers used qualitative semi-structured interviews, carried out between September 11 2017 and February 20 2019, and a grounded theory analytical approach to explore the social process of childhood vaccine refusal. They recruited a national sample of 21 Australian non-vaccinating parents from five of the country's eight states and territories, having (i) advertised on national radio and in playgrounds in low vaccination areas and (ii) used snowballing. Inductive analysis identified stigmatisation as a central concept; stigma theory (see above) was adopted as an analytical lens.

The experiences and actions described by parents were complex and covered a range of interactions with different aspects of society, as illustrated by the social ecological model (SEM). The researchers use this model to categorise the sources of these experiences according to individual, interpersonal/social, community, and society spheres.

In short, parents' described experiences point to systematic stigmatisation, which can be characterised according to the aforementioned 5-step process. Quotations included here depict their experiences of (i) labelling and (ii) stereotyping, with many not identifying with the "anti-vaxxers" portrayed in the media and describing frustration at being labelled as such, believing they were defending their child from harm. They wanted agency to take responsibility for their child's health and safety in the way they saw fit. Participants described (iii) social "othering", leading to relationship loss and social isolation, and (iv) status loss and discrimination, feeling dismissed as incompetent parents and discriminated against by medical professionals and other parents. (One said: "To me the sense of not being listened to in the first place, that your views or your concerns are not valid in any way...") Finally, (v) legislative changes exerted power over their circumstances, rendering them unable to provide their children with the same financial and educational opportunities as vaccinated children, often increasing their steadfastness in refusing vaccination. ("...The more society outcasts me for my decision, the more I find it hard to come to their point of view. So I feel like I'm just being pushed away.")

Some of the parents in the study spoke of their children being shunned by peers at the direction of their parents and/or being excluded from social circles with vaccinating families. These children are subject to policies that deny them access to early childhood education; those who are eligible are denied access to the financial support vaccinated children enjoy. In fact, there is evidence that these harms are stronger for children themselves (who do not choose) than their parents (who do).

The parents in this study described several stigma management strategies, including changing their behaviour or choosing a different healthcare practitioner to avoid negative interactions and finding likeminded families. For example, parents spoke of adjusting their approach to interpersonal engagement about vaccination, being very careful about who they tell about their decision. Many non-vaccinating parents joined or formed social groups with shared values, norms, and identity when it comes to stance on vaccination. New peers who were supportive or accepting of their choices in a few cases helped activate and mobilise parents to be even more proactive in their non-vaccinating stance.

Parents described the practical ways they were able to counter the negative effects of Australia's mandatory vaccination policies, such as finding other non-vaccinating parents for home schooling. Other participants were less affected by the policy changes, either because their incomes were beyond what qualifies for financial assistance or because they lived in states that still permitted enrolment in childcare for the unvaccinated.

Thus, the findings of this study suggest that non-vaccinating Australian parents (and often their children) experience a social process of stigmatisation, the origins of which crosscut all levels of society. These crosscutting origins "suggest that such stigma has both emerged from and contributed to media framings and policy interventions." The researchers clarify: "While we acknowledge that the punitive policies in Australia are not themselves explicitly tools of stigma, they were implemented into a setting of active social stigmatization of unvaccinated children and their families, and by their exclusionary nature they participate in creating the stigmatic environment experienced by unvaccinated children."

Based on these findings, the researchers suggest that, while "it might be argued that social stigma and exclusionary policies directed [at] a small minority for the greater good are justified, other more nuanced approaches based on better understandings of vaccine rejection could achieve comparable public health outcomes without the detrimental effect on unvaccinated families." Looking to the SEM for a possible solution, the researchers explain that:

• At the interpersonal level, efforts are being made to help clinicians approach vaccine refusal with new tools that facilitate respectful encounters for both parent and provider. These efforts could directly address some of the behaviours described in the present study (for example, being stereotyped by, and thus avoiding, healthcare services).
• At the community level, the focus could be on providing and promoting an alternative to the current dichotomous discourse based on stereotypes and on facilitating respectful and less stressful social interactions between vaccinating and non-vaccinating friends and family members. Tools such as guidance documents for public communicators on how to talk about the issue of non-vaccination could be used to foster better understanding among public figures, politicians, and the media in how to handle non-vaccination more constructively in the public sphere. Guidance could also be developed for vaccinating and non-vaccinating members of the community alike to facilitate respectful interactions, both online and in person.

In conclusion: "The methods to achieve high vaccination rates should not excessively compete with the ultimate goal that vaccinating children seeks to serve - of health and wellbeing."