Addressing Issues of Vaccination Literacy and Psychological Empowerment in the Measles-Mumps-Rubella (MMR) Vaccination Decision-Making

A Qualitative Study

Marta Fadda; Miriam K. Depping; Peter J. Schulz

Disclosures

BMC Public Health. 2015;15(836) 

In This Article

Results

Participant Characteristics

Demographic data are summarized in Table 1 . Most participants were mothers, had more than one child, and were in their thirties (age range 23–42). Regarding education, either a university degree or a professional university certificate was held by nearly two thirds of the sample. Immigrants represented a large percentage of our sample, which is in line with current statistics about the migrant population in Switzerland (estimated at 35 %[80]). On the basis of their reports, participants were classified as either being opposed (n = 3), favorable (n = 13), or undecided (n = 4) with regards to the MMR vaccination.

The analysis of the transcripts yielded four main themes: (a) the paradox of free choice, (b) giving up power, (c) a far-reaching decision, and (d) the demand for shared-decision making. Parents' perceptions with regards to the likelihood to catch measles varied across the participants. Most parents agreed that measles is a highly infectious disease that can spread even faster if the child frequents other children, and learned from different sources that the disease is "making a comeback". Undecided and vaccination-opposed parents, on the other hand, believed that their children were not likely to catch it, and expressed a preference for either natural immunity or safer alternatives to the MMR vaccination as a form of prevention. Only few, highly educated pro-vaccination participants cited the possible serious consequences of measles. The majority of parents found, instead, that measles was not a serious disease, referring to it as a type of "chickenpox" that can only have serious consequences in adults. Experience seemed to shape the perception of the severity of measles among those participants who had contracted the disease in the past. Pro-vaccination parents felt that their children were not likely to incur in side-effects due to the vaccination and they did not consider them to be serious, while undecided and opposed participants perceived them as highly probable and severe.

The Paradox of the Free Choice

Unlike some of its neighboring countries,[4] Switzerland does not have any mandatory vaccinations, but parents are recommended to follow a specific vaccination schedule for their children. The MMR vaccination is among the recommended vaccinations. However, a main finding was that parents differed in their interpretation of current vaccination policies in Switzerland with regards to the MMR vaccination, with some misinterpreting the ultimate scope of the free choice in the vaccination decision, i.e. parental empowerment. The view that MMR would be mandatory if measles were a serious disease, and not merely recommended by health authorities, dominated the reports by vaccination-opposed parents.

"I say, if it was really a serious disease that has to be absolutely eradicated and never appear again, I believe all nations would agree on vaccinating children. […] When they asked me if I wanted to vaccinate him against rubella, I did not feel like it. I said no. […] I listened to their opinion, but I did not listen to their advice. In the end, I decided to follow what my husband and I had decided to do". (Mother, 38, Ticino, Secondary School, Opposed)

The same mother, guided by her perception that catching measles was not likely, expressed a preference for either natural immunity or safer alternatives to the MMR vaccination as a way to prevent her child from getting the disease:

"If there was a measles outbreak somewhere… well, I would pay more attention. But I have the impression that everything always works by hand contact, doesn't it? I have this idea in mind, that if I teach him (the child) to regularly wash his hands, since he also likes water a lot, he will be protected… This is my prevention".

Some parents believed that Switzerland had both compulsory and recommended vaccinations, and translated the non-compulsoriness of the MMR vaccination as further evidence that it was not a necessary preventive measure:

"Anyway, I said, let's do the basic ones, the almost mandatory ones, those. Whether I want or not? I don't want! Because if you tell me 'if you want' it seems optional, an optional vaccination, for me it seems there is no risk, no? If it is optional… come on! [..] And since I will make the decision with my wife, we often go and look for information. We look on the Internet, we only look on the Internet".
(Father, 28, non-EU, University, Opposed)

On the other hand, parents that had a positive attitude towards the MMR vaccination saw current policies as a sign that the vaccination is important to protect children from unnecessary illness.

"If they offer a vaccination, there must be a reason. I do not want him to get a disease that is out there. Vaccinating is life".
(Father, 35, Non-EU, Obligatory School, Favorable)

Giving up the Power

A number of parents reported that they perceived themselves to be unable to make a sound decision for their child. As a consequence of this feeling, some of them reported that they gave up their role as the agent in the management of their child's health, while others opted for an autonomous decision anyway. Some completely relied on other decision-makers such as the pediatrician or followed what their parents had done with them or was prescribed in their original culture, while others made a gut-driven decision. To some parents, ability to make a decision included the skills needed to grasp the official information received by health authorities and health professionals. As this language mainly includes statistical information on the likelihood of getting the disease or experiencing vaccination adverse events, parents reported a preference for narrative information on the MMR vaccination, which they described as easier to understand.

"Moreover, my problem is that I don't have a scientific background. And when you hear… When you read this [official] information, you realize they all start from the results of some statistical tests that they did on vaccinations. Maybe the base is wrong… because one starts from certain statistical data, and the other starts from the same, but not keeping into account other data".
(Mother, 34, EU, Professional University, Opposed)

Some parents reported that they felt overwhelmed by fear of possible side effects of the MMR vaccination, sometimes after becoming familiar with anti-vaccination campaigners and other parents' personal experiences. These parents believed that a key skill to be competent in the decision is the ability to assess the reliability of the information received and its quality. For these parents, it becomes difficult to decide which information source to trust. As a consequence, they reported that the decision over the MMR vaccination was emotionally-driven. The mother cited above experienced fear when she was informed, during one of the conferences held by anti-vaccination doctors she regularly attended, about the severe side effects that the vaccination might cause. She described her decision as follows:

"Since you do not know how these statistics are made and if they are reliable or not, you say: it's not possible that in the end they reach completely different results. Should I trust one or the other side? And so sometimes… you end up just listening to your gut. […] If you go to one of their conferences, they explain what can happen to the child, they explain everything. And then you start to fear… Because they have interviewed mothers whose children, just after the shot, could not move, or could not speak".
(Mother, 34, EU, Professional University, Opposed)

Other parents reported that one can perceive himself or herself as competent only when holding accurate information on the MMR vaccination and on the likelihood to catch the disease. Lacking this information, and worried that they could make the "wrong" decision, they did not want to have the final say on it, but preferred to devolve it upon the pediatrician.

"If I had to guess which percentage of vaccinated children get sick, I don't know where… I don't know the percentage. So I would ask the doctor. I'd look on the Internet, but ultimately before making a decision I would ask the doctor anyway".
(Mother, 41, Ticino, University, Favorable)

Entrusting this decision upon a medical professional without questioning it and refusing to be involved can, however, have dangerous consequences, as some parents also expressed a preference for natural immunity after being recommended by doctors and nurses to avoid the vaccination.

"To be frank, the pediatrician once told me "There are certain vaccinations that I recommend, others that I don't. And this is about vaccinating for something that no longer exists, isn't it? So, honestly, I do not recommend". And at that time I didn't know much. I was very busy, too. So I listened to him".
(Father, 28, non-EU, University, Opposed)

Other parents felt that, since they lacked the training doctors usually have, the MMR vaccination decision could only be driven by one's family tradition or by social norms related to the original culture. In this case, parents had a propensity for what had been done with them when they were younger, or for what was socially prescribed in their original culture. Participants with an immigration background held a number of health beliefs related to their home healthcare system where vaccination was compulsory or where pro-vaccination social norms were stronger. For these parents, vaccinations in general represented an issue that is never discussed, as immunizations were recommended by a trusted authority. They did not question the importance of the vaccination, as vaccinating was also culturally prescribed in their home country.

"In Brazil, vaccination is a matter of culture, everyone has his or her own vaccination book, and if you do not fill it, then you are not accepted. It never happens that someone opts out. If there is a vaccine, we just do it. We never discuss about it. We did not study medicine, we just have to trust doctors. […] For me vaccination comes at the first place, possibly because of my culture, this is how I grew up. It is very important to us, to all Brazilians.
(Father, 35, Non-EU, Obligatory School)

Perceived competence in the MMR vaccination decision differed among our participants. Moreover, the idea of competence was also seen by some as related to the ability to make an autonomous decision. Some parents mainly defined it as the set of skills necessary to understand the information provided by official sources (statistics). For others, it is the ability to distinguish reliable from non-reliable information, particularly when contradictory information is presented. Some stated that feeling competent was about being well-informed on the risks and benefits of the vaccination and the risks of the disease(s). For some parents, perceived competence is related to the lack of medical training, and in this case issues of vaccination tradition and social norms can play a strong role, since the decision will be ultimately made in accordance with what was prescribed by the original culture.

A Far-Reaching Decision

The MMR vaccination decision was generally cited as one of the most significant decisions made since the child's birth. When asked about what importance meant to them, some parents spontaneously reported that by deciding to give the MMR vaccination to their child they would contribute to accomplishing a global goal and get closer to the eradication of the three target diseases.

"My main aim is to try to eradicate these diseases. The last time I went to the doctor, I saw a poster that read: in South America, measles has been… I mean, it does not exist anymore. In Switzerland is still present instead".
(Mother, 36, Swiss-German, University, Favorable)

For others, the vaccination decision is central because it concerns the child's health. The impact of the decision, in this case, may be of two types: on the one hand, administering the vaccine is perceived as injecting something in the child's body which might cause harm, while on the other hand, failing to do so might result in the child experiencing a dangerous illness.

"I did not feel like it, because I felt that I was injecting something harmful. Inside myself, I did not feel like it. So I preferred to listen to these (anti-vaccination) groups. […] But, obviously, I don't know if he gets measles tomorrow and he dies (as a consequence). This is the most important choice, because it is just about his life".
(Mother, 34, EU, Professional University, Opposed)

Further support for the importance of this choice rests on some parents' experience that deciding over the MMR vaccination might affect not only the child's social life, but also the family life-style.

"I think that taking him to the nursery school is the most important decision, the one that has the greatest influence on his life right now. But the vaccination is important alike, because it also affects our travel plans. We are frequent travelers, we often go to Africa or Asia".
(Mother, 34, EU, Professional University, Favorable)

Some parents reported that complying with official vaccination recommendations is a matter of common good and respect towards society, and in this sense they suggested that educational institutions and health authorities should adjust their vaccination policies in order to prevent free-riding and putting at risk those children who cannot be vaccinated for medical reasons.

"To my mind there should be one guideline. There should be a model that regulates the admission of children with certain requisites at school. Because I think that, if your child is vaccinated, it also protects the others. So it seems to me that this has a scope… a bit more social […] I say… respect! You cannot have everything, you cannot decide this and later exploit public structures where there are norms, right? This is inconsistent to my mind".
(Mother, 40, EU, University, Favorable)

Parents reported that this social aim is indeed missing among anti-vaccination parents, who merely worry about their own children in an individualistic fashion.

"For them [vaccination opposed parents]it is not important that, unless everyone is vaccinated, we get the disease. I mean, the collective scope, they do not even consider that. They look at their child and say - this way is better, to our opinion".
(Mother, 35, EU, University, Undecided)

Some saw the concept of importance as a synonym of contingency and stress. In this sense, the MMR vaccination decision was seen as a less compelling choice than others, which instead required a long and constant mental reasoning.

"I don't know if I would say that it is more or less important than deciding over the nursery school… It is definitely less pressing, in the sense that choosing over the nursery school has demanded a more careful consideration than deciding on the vaccination, because its consequences were just more contingent. Vaccinating takes a moment. Deciding whether to send him to the nursery, for how many days, which days and so on, that entails a number of choices that go beyond the contingency of the day of the vaccination. It's a matter of daily life, it's not just confined to a specific moment".
(Father, 31, EU, University, Favorable)

In sum, the importance of the MMR vaccination decision is seen by parents in terms of its impact on three main levels: (a) the child's health, since he/she is the direct recipient of the vaccination, (b) the family's life-style, as diseases might impede normal activities and habits, and (c) a global/social level, since vaccination is seen in relation to the eradication of the disease and to illness-prevention among the child's peers.

The Demand for Shared Decision-Making

A main finding is that pediatricians were perceived as key elements in the decision-making process, as both a source of information and motivation to engage in the decision. Although the pediatrician was cited as the main source of information by all parents, differences emerged in term of perceived reliability, adherence to and type of recommendation offered. One quarter of the participants, for instance, reported they were not recommended by the pediatrician to vaccinate against measles.

"The pediatrician has advised me against MMR. He told me he is not really in favor of vaccinations. But I decided I will do it. I have decided to go against the tide!"
(Mother, 35, EU, Secondary School, Favorable)

For most participants, irrespective of their attitude towards the vaccination, previous consultations with the pediatrician around the topic of the MMR vaccination were not perceived as helpful and often left them frustrated, while more involvement from the health authorities' side was also claimed. A number of parents complained that they did not receive quality and tailored advice according to their own skills, neither were they directed to reliable information sources.

One mother, for instance, stated that she was dismissed by the pediatrician, who simply recommended her to get informed and return to his office once she had made a decision:

"When I had to decide for the first vaccination, he told me «Look, I am not so in favor of vaccinations. Look for information and make up your mind. » […] I wish I had clearer explanations, especially because what you read is so vast and hard to interpret. I definitely wish I had better information from the pediatrician. […] He did not even direct me to any sources, he only said "Do as you like". I wish I had a guide instead".
(Mother, 35, EU, Secondary School, Undecided)

Some reported that, in order to feel more confident when making the MMR vaccination decision, they would like pediatricians to devolve more time to explaining the risks of the vaccination to parents, by giving a proper lecture on this topic.

"I think that each pediatrician should set a meeting with all parents and give a proper lecture on this vaccination, not only he alone, but with other doctors. He should give a one-hour lecture, where he explains what he usually does, what he gives to babies when they have this or that problem, where he explains the most common adverse events… I want him to do it so that we feel confident about our decision".
(Father, 28, Swiss-Italian, University, Opposed)

Parents not only suggested that pediatricians should organize regular consultations with them to answer all questions and explain the possible side-effects of the vaccination, but also expressed a desire to attend meetings with both pro- and anti-vaccination doctors, where they could actively participate in the debate.

"It would be great if the Canton, or the Confederation, could organize conferences with pro and anti-vaccination doctors, where parents can go and ask all kinds of questions… Because when you go to pro-vaccination events you hear something, and when you go to anti-vaccination conferences you hear something else".
(Mother, 34, EU, Professional University, Opposed)

In terms of discussion, many felt that a lack of debate was a major weakness of their consultation with the pediatrician. One mother reported that the pediatrician did not engage in discussion on the MMR vaccination with her, and that was among the main reasons why she and her husband were considering switching to another pediatrician:

"We have never discussed the MMR vaccination with the pediatrician, he only told us there is this vaccine. That's why my husband and I are challenging him right now… […] He will probably give us only some material to read when we see him next time".
(Mother, 32, EU, University, Undecided)

Some parents expressed the desire to make an autonomous decision, but at the same time being guided by the pediatrician's advice and his/her engagement in discussion with the couple of parents. They felt that competence in such a decision could only be achieved through the pediatrician's guidance.

"I would like to feel a stronger engagement by the doctor, to receive adequate information, to have a discussion with my husband and, currently, a discussion with both in the same place. […] I feel I can decide, but only if guided by someone in the field, by his or her advice".
(Mother, 27, EU, University, Favorable)

In addition, for some parents, it is not sufficient that pediatricians simply explain the risks and benefits of the MMR vaccination, but it is important that they take a stand on the topic and state their position.

"I think pediatricians should take a stand… and if they don't, we should force them to do it. Doctors will obviously say, "It's your decision, I just explain the risks and benefits", but for me it's important that in the end… how to say… they explicitly take a stand".
(Father, 31, EU, University, Favorable)

Parents complained that they did not receive quality and tailored information by the pediatrician nor were they directly supported in their information-seeking. In addition, what should probably be the core of a shared decision making approach by the pediatrician, i.e. discussion, was reported by most parents as the biggest deficit of the consultation.

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