Why parents refuse childhood vaccination: a qualitative study using online focus groups

In recent decades, vaccine-preventable diseases have been greatly reduced through routine vaccination programs in high income countries [1]. In The Netherlands, the National Immunization Program (NIP) is a voluntary program that offers childhood vaccinations free of charge and includes vaccines against twelve infectious diseases (i.e., polio, diphtheria, tetanus, pertussis, rubella, measles, mumps, disease caused by Haemophilus influenzae type b, meningococcal C disease, hepatitis B, pneumococcal disease and cervical cancer caused by human papillomavirus (HPV)). Children aged 0–4 years receive the vaccines at child welfare centres (CWC), where they also get free-of-charge health check-ups during consults attended alternately by physicians and nurses on a scheduled basis. Parents can choose between a regular CWC or a CWC based on anthroposophy, a spiritual philosophy founded by Rudolf Steiner [2]. The Dutch Health Council recommends the vaccines included in the NIP, and the National Institute of Public Health and the Environment (RIVM) manages the program implementations of the NIP and provides parents and health care workers with information about vaccinations. Parents of infants receive some oral information about the NIP when a nurse of the CWC visits the parents at their home in the first week after birth of their infant. After that (when the child is 4–6 weeks old), parents receive a brochure with information about vaccines, (vaccine-preventable) diseases, vaccination schedules, and side effects.

Overall, vaccination coverage in The Netherlands is 95% (except for HPV) [3]. Despite the success of the NIP, many parents appeared to become more critical about childhood vaccination in the last few years, at least as far as HPV-vaccination is concerned. In The Netherlands, there was a wide debate in the national press about the 2009 introduction of vaccination for HPV for 12 year old girls, resulting in mixed messages and confused feelings in the population [4]. The expected HPV vaccination coverage of 70% turned out to be about 50% [5]. Also, at the end of 2009, during the H1N1 influenza pandemic, Dutch parents criticized the quality of information about the risks and benefits of the influenza vaccination, which was provided by the national health authorities [6]. A well-known group who refuse vaccination are conservative Protestants living in what is called the Bible Belt region, which stretches from the southwest to the northeast of the country. Such refusals have been influenced by tradition or predominantly religious arguments [7]. Parents who refuse vaccinations might also be influenced by other factors.

Refusal of childhood vaccination may be influenced by concerns about vaccine components, low perceived likelihood and severity of the infectious diseases, and a trusting relationship with a natural healer or another respected person who doubts vaccination safety and effectiveness [8, 9]. Hilton et al. [10] showed that some parents fear an overload of the immune system caused by combination vaccines. Additionally, the perception that vaccination is more risky than non-immunization [11] and issues of harm, distrust and access might play a role in refusing childhood vaccination [12]. According to Sporton et al. [13], parents who refused vaccination made a well-considered decision based on an assessment of the benefits and the risks of vaccination, the child’s susceptibility to the potential disease, and the acceptance of responsibility for that decision.

The aim of this study is to attain more insight into these factors in order to design public information and interventions that will help parents make decisions that best serve their children and the wider community. We performed internet-based focus groups with parents who had refused all or part of the NIP recommendations for children 0–4 years old.

The focus group discussions were conducted online because the diverse population was difficult to reach and lived throughout The Netherlands, making face-to-face focus groups infeasible. Online focus groups are used more and more [14], in part because participants can choose their own time to answer questions. Moreover, costs and time can be saved through the automatic and accurate storing of discussion data [15]. The focus group method in general is effective for exploring people’s opinions and experiences [15]. The group process can help individuals to clarify their views that might not emerge from a one-on-one interview.

This study explored what factors are important in refusal of childhood vaccination by parents. Like Sporton et al. [13], we found that most refusal of vaccination is based on deliberate decision-making of parents. Our results show that this decision is based on multiple factors, such as the lifestyle of parents, perceptions about the body and the immune system of the child, risk perception of diseases and vaccination side effects, perceived vaccine effectiveness, perceived advantages of experiencing the disease, negative experience with vaccination, and parents’ social environment. In addition, this study shows that the use of online focus groups is an effective qualitative research method resulting in meaningful data.

An important determinant of refusing vaccination is the lifestyle of parents. Some of our participants stated that living a healthy life decreases the risk of getting an infectious disease. This determinant was also mentioned by Meszaros et al. [17]. This indicates that not only perceptions and beliefs about childhood vaccination are an import factor in parents’ decision to refuse vaccination, but also that the general lifestyle of the parents might play a role.

Another determinant, which has also been reported by other studies [18–20] is risk perception. A 2007 meta-analysis of studies linking risk perception and vaccination by Brewer et al. [21] points to risk perception as an important factor in health behaviour. Our study shows that parents who refuse vaccination believe that the side effects of vaccines could be severe, that vaccine-preventable diseases are not that severe, and that their child is not very susceptible. These beliefs might reflect the fact that vaccine-preventable diseases have been reduced to the point that their risks seem less important than vaccination risks [22]. It therefore seems important that public health institutes keep communicating about the severity and susceptibility of vaccine-preventable diseases.

Besides the perceived risk of disease versus vaccination, our findings as well as those of Hilton et al. [10] suggest that parents fear the immune system in infancy is not adequately developed for a good response to vaccination. They apparently have not received enough information about the influence of vaccines on the immune system of their child, and their resulting doubts cause them to refuse vaccination.

Benin et al. [9] showed that parents who refused vaccination reported a trusting relationship with a natural healer or some other respected person having doubts about vaccination. Our study shows similar results, in that a proportion of the parents visited an anthroposophical CWC. Besides this, some parents mentioned that experiencing a disease is positive, leading to certain physical and/or mental development. This perception seems consistent with the anthroposophical lifestyle and view about vaccination [2]. The vaccination coverage among anthroposophists in The Netherlands is somewhat lower compared to the rest of the population [23], and a study of Harmsen et al. [24] showed that parents who visited an anthroposophical CWC mostly refused the Mumps, Measles, and Rubella (MMR) vaccination because they perceive these diseases as essential for the physical and mental development of their child. These findings might indicate that parents with an anthroposophical lifestyle and/or parents who visit an anthroposophical CWC might be more critical towards childhood vaccination. However, the influence of anthroposophical CWCs on parents’ decision making is so far not clear and therefore more research is needed.

Interestingly, this study showed mixed results about the influence of the social environment. As found previously [25], sometimes parents feel supported in vaccination refusal by their family and friends, with whom they discuss the issue. Others discuss it with no one, in part due to fear of negative responses from their community. Brown et al. [26] mentioned that parents felt that their decision to vaccinate or not would be judged by people around them.

Mills et al. [12] and Brown et al. [26] showed in their studies that forgetting to make an appointment or to schedule an appointment were also factors that influenced a lower vaccination coverage. This factor was not found in this focus group study, future quantitative research is needed to explore this further.

Other studies have shown that parents need more information about childhood vaccination [27–29]. Our study results showed that this is true also for Dutch parents. They would particularly like more information about the side effects of the vaccines, the components of the vaccines and more assurance that the NIP is non-mandatory.

Parents in this study indicated that when they start searching for information, it is hard to find reliable information and to make a choice from all the information they find. RIVM should therefore supply more information about childhood vaccination and also list reliable sources of additional information. In addition to official websites, social media should also be listed because of the growing proportion of online communicators, including vocal and active anti-vaccination groups [30]. Along with the risks of non-vaccination, the official information should address the risks of vaccination. Official language should be moderate, avoiding extreme formulations, because a strong assertion that there is no risk in vaccination can paradoxically lead some people to suspect or perceive a higher risk [31].

Our study has both strengths and limitations. The primary strength is its use of online focus group discussions. At our online forum, parents were anonymous and therefore free to say whatever they wanted. In addition, parents could log in and respond whenever they had time, which might have resulted in a high response to every posting. Besides these strengths of the online focus group, a limitation might be that parents responded less to other parents’ comments compared to face-to-face focus groups, which might have resulted in less discussion. Although qualitative studies do not seek to achieve representativeness through randomization, our study is limited by its lack of demographic information. Such information would have made findings more representative with regard to, for example, gender, educational attainment, and age. Another limitation is a possible response bias, as parents who are more negative about childhood vaccination might have been more willing to participate. Unfortunately, we have no access to information about the background of parents’ non-response to our invitation. While this qualitative study provides useful insight in the factors that influence decision-making about vaccination of parents who refused vaccination, quantitative confirmation of the findings is recommended among a large population of parents to get insight in which determinants are most important.

This study provides an in-depth insight into the perception of parents who took the deliberate decision to refuse all or part of the free vaccinations in the Dutch NIP. Information currently provided by the RIVM turned out to be insufficient for this group of parents. They are in need of verifiable knowledge about the effects of vaccination on the development of a child’s immune system; how much a healthy lifestyle can, by itself, protect children from vaccine-preventable disease; and what are the real risks, consequences and complications of such disease. At the same time, the information must increase trust in the NIP by providing more detail about vaccine side effects and more assurance that the NIP is not mandatory. Access to additional sources of reliable information should be provided. Listening to critical parents is useful for developing communication strategies that suits their concerns and reduce their feelings of ambivalence in decision making about childhood vaccinations. Further study is needed on how such information could best reach the parents who need it.