Losing Trust: Processes of Vaccine Hesitancy in Parents' Narratives

"The article provides insight into the ways in which people lose trust in vaccination, which is crucial for supporting trusting relationships between vaccine-advocating institutions and the publics."

Recently, there have been calls to understand the process of losing trust in vaccination rather than simply pointing to (mis)trust as one of the many reasons for vaccine hesitancy. While analysing vaccine hesitancy, it is important to note the historical, cultural, and political context of building (mis)trust between the state and its citizens. In this study, the Finnish context allows for the processes of losing trust to be examined within a socio-political culture of high institutional trust.

The article begins with a discussion of the concepts of trust, distrust, and mistrust and examines how the theoretical clarification of these concepts can benefit analyses of vaccine hesitancy. In empirical research, lack of trust in vaccines has often been conceptualised as a narrative of eroding trust in health experts and authorities. Such a linear view fails to acknowledge that acceptance of vaccination can stem from lack of choice rather than trust (such as when vaccine refusal has been sanctioned or children have been vaccinated without parental consent, both of which have historically occurred in Finland). Even trustful attitudes toward vaccination may consist of complex elements rather than a simple position of trust. Thus, the researchers argue that, instead of viewing trust and distrust as binary categories, trust/mistrust/distrust should be seen as a family of concepts in understanding the processes of losing trust in vaccination.

The analysis is based on ethnographic interviews with 38 parents with a total of 109 children, of which 46 were non-vaccinated, 38 were partially vaccinated, and 25 were fully vaccinated until at least the age of 6. Almost all participants were female; many said they had gotten interested in vaccination, done most of the information seeking and then suggested to their spouse that they opt out of some or all vaccination for their child(ren). All research participants had trusted vaccination in the past, at least to some extent. They had accepted recommended vaccinations for themselves, and often for their children. The aim of the analysis was to provide an account of the processes that led from this position of trust to one of questioning, mistrust, and distrust.

The researchers identified 2 paths to losing trust in vaccination. One was connected to mistrust - a cumulating suspicious attitude toward vaccines and related institutions. The other was associated with distrust - a more sudden loss of trust. They identified 4 types/narratives of losing trust:

1. The activist: Mostly parents of school-aged or older children, their path towards losing trust in vaccines had often started with an interest in healthy living. Some had encountered health problems and used complementary and alternative medicine (CAM) treatments in addition to biomedical treatments. Some had also studied CAM, either independently or through courses. Throughout these experiences, their attitudes of mistrust in public health experts and healthcare institutions grew stronger. Many had started by postponing vaccination, and only later decided that they did not want to vaccinate at all. Trust in vaccination was thus lost gradually, and their attitudes reflected mistrust rather than distrust. Activists were certain of their vaccination decisions.
2. The hesitant: These parents had concerns about vaccine safety and did not feel comfortable vaccinating, but were not very sure they wanted to forgo vaccines altogether. The hesitant parents did not feel like they could understand medical research publications on vaccination, so while they kept looking for information, they mostly relied on others, such as members of vaccine-hesitant social media groups, to interpret this information. However, they were also unsure about the extent these members could be trusted. Relying on intuition, they postponed vaccines or selectively vaccinated. Some of them faced pressure to vaccinate by healthcare workers, which increased their mistrust in the health system.
3. The disillusioned: These parents had previously trusted vaccination and had complied with the recommended vaccination schedule. However, they had encountered an event that had caused a sudden crisis of trust. Typically, their child had a severe condition that was diagnosed by a medical doctor as an adverse effect of vaccination. Many of the disillusioned parents had fought for recognition and diagnosis of their children's condition. This double letdown - first by the vaccinations they trusted were safe, and then by institutions they trusted to help if anything went wrong - had caused distrust in vaccines, the public healthcare system, public health officials, and state institutions.
4. The negotiator: The negotiators were parents who had previously followed the recommended vaccination schedule, until their child(ren) started to experience symptoms that the parents suspected were caused by vaccination. This concern, however, was dismissed by healthcare workers, who assured the parents - often without really examining the child - that the symptoms could not be related to vaccination. They found other parents with similar experiences and started to question official statistics about vaccine side effects. However, their vaccination decisions were often temporary in the sense that they did see (partial) vaccination as a possibility in the future.

If participants were categorised in the narrative type that best correspond to their account, 18 parents would be characterised as activists, 2 as hesitant, 4 as disillusioned, and 6 as negotiators. Throughout their narratives, all participants described an ethos of mistrust. Instead of "blindly" trusting the biomedical health system, it was crucial for them to critically examine its recommendations, knowledge production, and practices. Many participants felt they should not trust the leading vaccine sceptics either but, rather, that they should examine all information with the same level of questioning. Trust was thus not transferred from public health institutions to vaccine-sceptic actors but was replaced by the ethos of mistrust. This demand to trust one's own judgment in evaluating relevant information was a unifying theme in the 4 types of narratives of losing trust. Another unifying thread in parents' narratives was concern about the influence of the pharmaceutical industry through lobbying, as well as possible corruption among public health and governmental authorities.

Thus, "vaccine hesitancy develops in the intersections of personal experiences, social relations and social networks, encounters with healthcare institutions and governmental institutions, the media, public opinion, and public discussion." Some options for the way forward:

• Mistrusting type of vaccine hesitancy manifests as pondering, information seeking, and questioning that develops over the long term. This scenario leaves room for medical and public health institutions to support decision-making by engaging in respectful dialogue during healthcare encounters or by communicating that the public's vaccination concerns and desires for transparency are being taken seriously.
• In the case of the distrusting type of vaccine hesitancy, it is possible for healthcare professionals and public health actors to at least partially repair the severed relationship. Taking suspicions of adverse effects from vaccines seriously in clinical encounters is one example of how this could be achieved. Repairing this relationship is important because personal narratives of unresponsive or disrespectful interaction on the part of vaccine-advocating institutions and their representatives, as well as a lack of support in cases of diagnosed adverse effects, are widely shared in social media, creating identification and communities around these experiences of distrust.
• However, building trustworthy health systems is not simply a question of training healthcare professionals to listen to and talk empathetically with patients. It requires the development of institutions that commit to the values of transparency, solidarity, and fairness and can effectively and respectfully communicate these commitments to the critical public.
• While vaccine mandates and sanctions for non-vaccination can be successful in the sense that they result in some individuals reluctantly accepting vaccination in order to avoid sanctions, these kinds of vaccination policies do a disservice to efforts to build trust between people and governments or public health authorities.