“Bad” Literacy, Health Empowerment, and the Problem of Vaccination Refusal

Refusing one’s children to get the MMR vaccination, recommended in Switzerland since 1985, is considered a serious medical problem, for the unprotected children themselves as well as for others. The country has yet to reach the WHO-recommended goal of 95% coverage for full MMR vaccinations. Across European countries, parental attitudes about childhood vaccination programs are generally positive but there are also widespread parental concerns about the risks and side effects of vaccination. Vaccination refusal appears to arise from multiple factors, and important among these are beliefs based on accurate and inaccurate information plus feelings of empowerment and the resulting attempts by parents to manage their children’s health themselves.
In prior work supported by the SNF, the applicants have developed and begun to test a model of health literacy and patient empowerment that may shed new light on the problem of vaccination refusal. Ideally, of course, literacy and empowerment will join to enable the patient or healthcare consumer to make informed and constructive health choices that will advance his or her health outcomes and quality-of-life. But in reality, not all judgments are sound and not all information is correct. The Internet in particular can promote unintentional misuse of information—that is, bad literacy, a case in which more knowledge leads to worse decisions because it leads the patients to merely reinforcing their self-serving cognitive biases or to becoming cognitively “trapped” by commercial persuasion. The vision of consumer and patient empowerment in the health domain make this bad literacy particularly dangerous. Vaccination refusal exemplifies the situation of dangerous self-management—a psychologically empowered patient who assumes an authoritative role in his or her healthcare decisions lacking adequate knowledge and skill.
In this project, we seek to examine more closely the nature of bad literacy and why, specifically in the case of childhood vaccination, it is so difficult to overcome. Several approaches will be taken into account: the distinction between subjective and objective knowledge, the biases of regulatory focus and negativism, and anchoring and adjustment heuristics. In order to examine this problem, we propose a multi-method approach involving three studies. Study 1 employs a survey conducted in conjunction with the annual survey by the Cantonal Health Office of the canton Ticino of all families of middle school children. Parents of these children will be invited to participate in this survey whose purpose is to collect data on factors that may affect parents’ decision to vaccinate their children or not. Objective data on vaccination status will also be available. In Study 2, we will conduct a series of focus groups with parents of middle school children. The goal of the focus groups will be to investigate possible avenues to address parental concerns as well as ways to constructively empower parents to partner with healthcare professionals in the management of their childrens’ health so as to increase their acceptance of vaccination. In Study 3, we use our model of health literacy and empowerment coupled with the focus group data to design interventions directed at improving either vaccination literacy or constructive psychological empowerment. The planned study, along with another one applied for at the same time, will be the first to test the framework of health empowerment and its effects, which the applicants developed in recent years. This framework represents a major step in the expansion of the concept of health literacy from a narrow functional understanding to a more comprehensive concept of wider utility. It will also be the first to look deeply into the workings of “bad” literacy and link unusual concept to the study of health literacy and empowerment.