Understanding the Perceived Logic of Care by Vaccine-Hesitant and Vaccine-Refusing Parents: A Qualitative Study in Australia

"Our research shows that parents who make decisions not to vaccinate their children are simply trying to do their best for their child's health." - Paul R. Ward

This study explores the ways in which parents who have decided not to vaccine their children talk about the perceived risks and benefits incurred by vaccinating (or not vaccinating) their children. Between 2013 and 2016, the researchers undertook 29 in-depth interviews with non-vaccinating and/or "vaccine hesitant" parents in Australia. They interpret the data as indicating a "logic of care", which is seen by parents as internally consistent, logically inter-related, and inter-dependent. Whilst not necessarily sharing the parents' reasoning, they argue that an understanding of their attitudes towards health and well-being - moving beyond stereotypes and castigation - is imperative for any efforts to engage with their vaccine refusal at a policy level. This could start with recognising that the non-vaccinating parents are conscientious, acknowledging their efforts at intensive parenting, and engaging intelligently with them.

As the researchers explain, because "the scientific and policy consensus on the benefits of nationally recommended vaccination schedules is unequivocal, vaccine delayers and refusers have been framed (particularly within lay discourse) as lacking knowledge, possessing ignorance, or being paranoid conspiracy theorists....The term 'anti vaccination' is often applied to such parents, which can serve to polarise or punish them for not complying with government policy....Within this context, a number of scholars have warned about the problems of blaming people for not vaccinating..., and the need to understand parents' 'moral compass'." The evidence to date has shown that it is very difficult to change behaviour among parents who actively refuse vaccination. Providing "correct" information on vaccines improves knowledge but does not improve intent to vaccinate, indicating that simply debunking myths about vaccines in information campaigns or public health interventions may not be effective in changing vaccination behaviours. In addition, studies have found that trying to persuade non-vaccinating parents to accept vaccines is usually ineffective and often dissatisfying to both parents and health professionals.

In this study, the researchers found that many parents who opted for selective or non-vaccination were well educated, middle class, and often were distrustful of science, medicine, and "big pharma" marketing. The parents offered three general and interconnected rationales for their rejection or delay of some or all vaccines for their children:

1. Capacity: their perception of their own cognition and abilities to make and keep their child healthy. The choice to vaccinate or not was a central theme running through all interviews, based on a process of gathering information and making a conscious decision. Parents, first and foremost, saw themselves as active and capable agents who could (and should) arm themselves with information and act in the best interests of their children. They believed that their capacity qualified them sufficiently to make good decisions, and were quick to point this out, particularly in the face of those who thought otherwise.
2. Epistemological critiques of medical and scientific knowledge: their specific engagement with, and trajectory through, the scientific evidence and government recommendations. Parents in the study talked at length about not only the evidence underpinning vaccinations, but more broadly about the evidence underpinning numerous health-promoting and illness-preventing activities they undertook with and for their children. Their interrogation of, and engagement with, this evidence took the form of critiquing Western medical epistemology and making space for a different one.
3. Salutogenic parenting: their comprehensive preventative and health promoting practices which, they believed, replaced the need for vaccines. Originally coined by Antonovsky to refer to what he saw as the origins of health, salutogenesis requires active participation so that the human body can remain at the optimum end of the continuum. Salutogenic parenting means engaging in practices that are believed by the parents to equip the child's immune system with general health and resilience. Parents' activities included managing nutritional intake during pregnancy, breastfeeding, feeding their children organic and/or home-grown food, cooking from scratch to reduce preservative consumption, reducing their children's exposure to chemicals and toxins, and promoting physical activity and play-based learning. There were also a lot of statements about being "unplugged" from mainstream society and wanting to live "off the grid", including not watching commercial TV or listening to commercial radio. However, products marketed as "natural" were also questioned by some participants, who undertook research on ingredients in order to feel comfortable in giving them to their children. This demonstrates their endless cycle of vigilance, their sense of capacity to question, research and make their own decisions, and their mistrust of forces that might seek to exploit them.

Capacity, epistemological critiques of medical and scientific knowledge, and specific salutogenic activities mutually and repeatedly reinforced each other; together they define the logic of care underpinning vaccination decisions. Participants genuinely believed that they posed little/no risk to others because they perceived their children as sufficiently healthy, as a direct result of their salutogenic parenting. Their focus, whilst consistent with the concept of neoliberal mothering, was squarely placed on creating and maintaining healthy children (an assets-based approach) as opposed to seeing (but ignoring) that their children posed potential risks to others due to their non-vaccinated status (a deficits-based approach). They actually saw their children as qualitatively different from unvaccinated children who were not being raised on a salutogenic regimen. In short, parents saw their rejection, selection, or refusal of vaccines not as a deficit, but rather as an asset - a positively constituted act.

"Our data show that attempts to pathologise 'non vaccinating parents' and construct them as non-compliant and risky for population health does not recognise their perceived logic and salutogenic parenting, and simply leads to further polarisation and distrust. However, purely focusing on the intensive and positive parenting practices, but recognising non-vaccination as being part of a 'good parent', ignores the potential risks incurred for them and for population health. Further research is required to develop ethically and socially appropriate conceptualisations of and communication strategies with such parents. These strategies would recognise their salutogenic parenting but also recognises the need, from a public health perspective, for increased childhood vaccination rates, thereby engendering two-way trust between non-vaccinating parents and relevant instruments of government."

Sobo, referenced in the paper, argues that we need to learn from parents and then provide communication in culturally consonant ways, such as emphasising how vaccines help a child's immune system to "self-strengthen naturally", and how possible side effects of vaccine-induced fever could be re-worded as indications of "self-strengthening and bodily renewal", which "demonstrat[e]...that the benefits of childhood illnesses are not being foregone". In their own study, the researchers conclude that reinforcing participants' self-conception as free-thinkers, good parents, and knowledgeable people would likely provide resonant messaging.

In addition to a new toolkit for communication and messaging, other strategies might include working through trusted health professionals such as midwives and child and adolescent health services that support vaccination. Supporting general practitioners (GPs) and nurses to give advice that maintains the relationship with the health care system is also important, as is working constructively with local communities on issues where there is a shared goal, like child health and illness prevention. Further research will hone in on these strategies in non-vaccination hotspots, including the Northern Rivers area in New South Wales (NSW), Adelaide Hills suburbs in South Australia (SA), and parts of Western Australia (WA).

Editor's note: A previous paper, "Vaccine Rejecting Parents' Engagement With Expert Systems That Inform Vaccination Programs" [Journal of Bioethical Inquiry, March 2017, Volume 14, Issue 1, pp 65-76] focused on a different analysis of the same data (mistrust of pharmaceutical companies and other "expert systems"). In short, the "data show how perceptions of the profit motive generate distrust in the expert systems pertaining to vaccination....[P]articipants perceived that pharmaceutical companies had a pernicious influence over the systems driving vaccination: research, health professionals, and government. Accordingly, they saw vaccine recommendations in conflict with the interests of their child and 'the system' underscored by malign intent, even if individual representatives of this system were not equally tainted." It is available by subscription only, but an abstract is here.