Participants
In total, we held 8 one-week online focus groups with all the parents who responded to the invitation (n = 60) and who had refused all or part of NIP vaccinations on non-religious grounds. Of the 8 groups, 5 included parents who completely refused vaccinations (n = 39, 7–9 parents each), and 3 included parents who partially refused vaccinations (n = 21, 7 parents each).
Five parents had one child; most parents had two (n = 34) or three children (n = 14); 6 parents had four children, and one parent had five children. Most parents visited a regular CWC (NV = 25, PV = 19), some parents visited an anthroposophical CWC (NV = 10, PV = 1), and some parents used no CWC at all (NV = 4, PV = 1). Because of the anonymity of the participants, no other demographic variables (like gender) were available.
The four main themes (i.e., topics at the online forum) were divided into sub-themes and are summarized below with relevant quotes of the participants. Despite separate analyses, the findings on parents who partially and completely refused vaccination are described together, because they were very similar. The few differences between these two sub-groups are described at the end of the results section.
Positive and negative aspects of the NIP
Regarding theme one, PV and NV participants were asked to mention some positive and negative aspects of the NIP in general. Participants agreed that a positive aspect of the NIP is that it is well organized: “It is a well-organised 'machine’” (NV). Another positive is that vaccines are freely available. Participants who realized that the NIP is non-mandatory felt positive about this, too: “A positive aspect is that you have access to vaccines in The Netherlands and, as a parent, you have a free choice” (PV).
Some participants mentioned that there were too many vaccines and that vaccination in the NIP started too early: “A negative is that more and more vaccines are added” (PV). Another participant said: “I find it unfortunate that the RIVM vaccinates at a very young age when the immune system is hardly built” (NV). Another negative aspect that participants agreed upon was that they felt vaccination was mandatory, although it is not: “You get the feeling that you MUST do it. When you do not vaccinate you receive a reminder to vaccinate by post. You feel almost guilty if you do not participate” (PV).
Determinants of vaccine refusal
Theme two focused on parental decision-making. Various factors influenced the choice of parents to refuse vaccination partially or completely. These were related to lifestyle and parental perceptions about the body and the immune system of the child, risk perception of diseases and vaccination side effects, perceived vaccine effectiveness, the potential advantages of experiencing the disease, negative experiences with vaccination, and social environment.
Lifestyle
Lifestyle of the participants appeared an important determinant for refusing vaccination. Participants mentioned that their healthy lifestyle promotes their children’s health, and therefore the risk of getting an infectious disease is reduced. Some participants focused only on nutrition: “We rely on our 'preventive’ eating habits and lifestyle. Especially good nutrition ensures that you do not get ill” (NV). Other participants focused on other aspects of a healthy lifestyle, such as giving children a peaceful basis for life: “All my choices are currently aimed to give my children a peaceful basis for life: choose to breastfeed (about 1.5-2 years), raise children in a small-scale home, part-time work, first half-year no childcare, minimize shopping/travelling with young children. All kinds of things that do not overcharge the immune system” (NV).
Immune system
Most participants also mentioned that they believed that the immune system of the child was not yet adequately developed to receive vaccinations: “Administering many different viruses/bacteria at the same time seems to me a huge attack on the immune system of someone” (NV). Another participant said: “A baby’s immune system has built up thanks to the mother, and it is not desirable in my eyes to give the child all kinds of substances that can disrupt the whole immune system” (PV).
Risk perception disease
The risk perception of the disease is low, because some participants seemed to think that their children were not likely to contract infectious diseases and that infections were not likely to be transmitted to their child: “I also assumed, based on the fact that both children did not come that much in contact with other children at a very young age, that the risks [of getting the disease] were less” (PV). Furthermore, some participants mentioned that vaccine-preventable diseases are not that severe and can be easily treated: “Most of them [the diseases] are not life threatening and, with support of the family paediatrician or homeopathic doctor, they are easy to treat” (NV).
Risk perception of vaccine side effects
Participants who perceived little risk of the disease accordingly believed that the likelihood of negative consequences of vaccination is higher and that these consequences are more severe than getting the disease: “There are many unpleasant side effects and diseases that are due to the vaccinations, and this is always dismissed as untrue” (PV). One participant said: “We also have serious doubts about the consequences of vaccinations. […] We also see a link between vaccinations and some behavioural problems” (NV). Other participants doubted certain components of the vaccines: “They also get many germs at once, I consider this mechanism unproven” (PV). Another participant doubted about the negative consequences of the adjuvants in vaccines: “There are adjuvants in vaccines that are poisonous, such as mercury and aluminium, and you really do not want that in your body, even in small quantities” (NV).
Perceived efficacy vaccine
Participants were also worried whether or not vaccine efficacy is adequate and if vaccines would lead to protection: “Some diseases are obsolete and disease agents mutate, so the protection is not always 100%. Some vaccines work only temporarily, while the side effects may be permanent (i.e., allergies, chronic colds, autism etc.). Even though children were vaccinated, there are still epidemics (such as mumps, whooping cough)” (PV). Another participant said: “I refused vaccination against pertussis, because the effect of pertussis vaccination does not seem to be large. More and more people get pertussis, despite new vaccines and the fact that children get vaccinated at a younger age” (NV).
Perceived advantages of having a disease
Some participants believed that attracting a vaccine-preventable disease was something positive for their child(ren). These participants cited the advantage of life-long immunity: “Let the body itself go through the disease. This is good for building up the resistance by the body itself. Diseases often give life-long immunity, while vaccines often protect for only 15 years” (PV). Some participants believed a child would develop physically and/or mentally after getting a disease: “You could say that the experience of a disease has a particular function; it makes a certain physical and/or mental development possible” (NV).
Negative experience with vaccination
A negative experience with childhood vaccination influenced the decision making of participants. Some participants were influenced by a negative story in the media: “Two years ago there was the case in which something went wrong with vaccinations for young children. Shortly after that, we refused a vaccination” (PV). Some have had a negative experience in their own environment: “Death in the family within 24 hours after vaccination…made me gain more in-depth knowledge. Together we made the choice not to vaccinate” (NV). Others cited a very personal negative experience: “Our oldest daughter (10 years) got epilepsy after vaccination. She got attacks for forty-five minutes. It was not clear to us that it was because of the vaccinations until she got such a heavy attack after the MMR vaccination that she ended up in intensive care. It’s unbelievable, but doctors deny any form of adverse reactions following vaccination” (NV).
Social environment
There were mixed findings as to whether people in the social environment influenced the parental choice to refuse vaccination. Some participants said their environment had not influenced their choice at all, whereas others said they were influenced by their friends or family members: “In my environment I had one friend who also looked critically at vaccinations. Partly because of that, I gained more in-depth knowledge” (PV). Another participant said: “I had a conversation with my mother and sister about whether to vaccinate or not. My sister did not adhere to the vaccination schedule; she vaccinated her children later than recommended” (NV). Other participants indicated that no one in their environment influenced them: “No people in our environment influenced our decision. We didn’t know people who were critical towards vaccination” (NV).
Interestingly, some participants said that they did not talk about their choice to refuse vaccination with others in their environment, because they expected negative reactions: “In my environment, I sometimes have to defend why we do not follow 'the norm’ [to vaccinate]” (PV). Another participant said: “We are the only ones who did not vaccinate! Our choice has often led to discussions, and more than once people showed that they thought we were crazy” (NV).
Need for information
Theme three focused on the informational needs of participants. Many mentioned that they did not receive enough information from the RIVM about childhood vaccination: “Negative to the NIP, I think, is that parents get absolutely no information about the vaccines. A box of paracetamol has a leaflet with a big piece of text, but about vaccinations we are only told that the puncture site may be painful, or that the child can get some fever” (PV). Participants indicated they would like to get more information about their freedom of choice: “I miss strong objective information about the background and choice options that you have as a parent, like vaccinating later…or choosing some vaccinations but not others” (PV). Specific information about the possible negative consequences of vaccines, like side effects, is also needed: “I also think that parents are not fully informed about the side effects and ingredients of vaccines by the RIVM.” (PV) Another participant stated: “I would like to have open and honest information, whereby the disadvantages and risks of vaccination are discussed so parents could make a well-considered decision” (NV).
Because participants’ information need was not fulfilled, they started to seek information by themselves. Some said that it was hard for them to find the right information and to make a choice to vaccinate or not, based on all the positive and negative information they found. One said: “Although I am trained to read and evaluate research, I had great difficulty to find my way in all the information” (NV). Another said: “We searched for all kinds of information, and the problem is: there is too much and you do not know how to filter. What is an opinion, what is a fact? Who is trustworthy, who is not?” (NV).
New vaccines in the NIP
Theme four focused on possible new vaccines being added to the NIP in the future. Participants had mixed feelings whether they would accept new vaccines or not. Some said that they would refuse all new vaccines in advance, because there are already enough vaccines in the NIP: “Even more vaccinations? My goodness, I think it is already too much! Let nature take its own course, please” (PV). Other participants said they would weigh the pros and cons of each new vaccine and make a deliberate choice: “Facing new vaccines, we think the same as compared with existing vaccines: how is the vaccine tested? What is exactly in it? What would be the side effects, etcetera. We are not fundamentally against it” (PV).
Differences between NV and PV parents
Participants who partially or completely refused vaccination reported many similarities in the way they think and make decisions about vaccination. However, there were still some differences between the two groups. For example, participants who completely refused vaccination reported having positive experiences with not vaccinating their child(ren). They mentioned that compared to children who were vaccinated, their unvaccinated children were less often sick: “It is our experience that our child, compared with vaccinated children at his age within our environment, is less sick, and when he is sick he recovers more quickly” (NV). The participants who completely refused vaccination also discussed herd immunity, saying it was not a reason they refused vaccination. They did not depend on it to protect their unvaccinated child. Indeed, some regretted the presence of herd immunity because it reduces the chance that their child will get the disease and thereby develop natural immunity against the disease: “It is absolutely not true that our children have not been vaccinated because others do. I rather hope that my children get certain childhood illnesses at a young age than (because of the high vaccination coverage) getting the disease when they are older” (NV). These participants also mentioned that they trusted the health care in The Netherlands and believed that when their child gets sick, the quality of health care is good enough to take care of their child: “We rely on the various methods of treatment, both conventional and alternative, when we face serious diseases” (NV).
Among PV participants, we found that some had not thought beforehand about refusing a certain vaccination. Some refused or postponed vaccination simply because their child was sick at the time, and therefore was not able to receive the vaccine: “I followed my feelings and did not vaccinate my child especially when I suspected that something was troubling, like a cold or some other inconvenience” (PV). Another participant said: “The main reason [to not vaccinate] was that my daughter struggled with her health, and that I first wanted that she would be healthy before she got vaccinated” (PV).