Results
Interviews were completed with 16 mothers whose children had completed immunisations appropriate for their age, 12 whose children were incompletely immunised, seven whose children were partially immunised (chose or advised not to have at least one component), and ten whose children had no immunisations. All families with incomplete immunisations had two or more children. (See Table 1.)
The following section presents a brief summary of similarities between immunisers and non-immunisers in terms of the concepts in the Health Belief Model. This is followed by a critical interpretation of the data linking this model with the theories of subjective perception of risk and decision-making under uncertainty. Finally the differences found between complete, incomplete, partial and non-immunisers in terms of these theories are summarised.
Table 2 summarises the differences and similarities between complete, incomplete and non-immunisers in terms of the core concepts of the Health Belief Model from these interviews (see for further details). Partial immunisers formed two groups; those whose child had had a severe reaction to DTP (Diphtheria, Tetanus, Pertussis vaccine) (n = 3) where the parents had been advised not to continue with vaccination and those who chose to only undertake some vaccinations or changed their mind about vaccinations after the first DTP vaccine (n = 4). The former of these expressed views similar to complete immunisers and the latter to non-immunisers. To better understand these differences in perceptions, the interviews were analysed firstly for themes from the studies of risk perception-dread, familiarity and controllability.
Dread of the Unknown versus Familiarity
Dread was an important determinant of what the participants in this study perceived as high risk. What was dreaded, however, differed between the immunisers and the non-immunisers. Immunisers dreaded the outcomes of the diseases, especially those with which they were unfamiliar. This fear motivated them to take the risk of immunising.
"The life threatening ones really concerned me, like ones I didn't know anything about…Polio really scared me and the thought of whooping cough… those are quite scary sort of concepts. Meningitis was frightening." (Complete immuniser, #11)
"I'm not sure about whooping cough, it just has horrible connotations in my mind but I'm not quite sure why, what can happen… Yeah, it's interesting isn't it, you know, people think it's the ones that you don't know about that you're likely to dismiss but it doesn't seem to me that way." (Complete immuniser, #13)
Polio, diphtheria, tetanus and meningitis were unfamiliar to these mothers but they conjured vivid images of severe outcomes. Of this group (immunisers), parents considered their children to be at greatest risk from meningitis. Even though most considered it unlikely that their children would contract these diseases, it was easy to imagine that if contracted, the worst was likely to happen.
LB: "If M hadn't been immunised, how likely do you think she would get these diseases?"
M: "Well I imagine it's fairly unlikely that she would get the diseases, um, but that's a double edged sword isn't it because having said that, that's largely because they've been for immunisation. … I imagine it would be very worrying, particularly some of the worst ones, it would be quite frightening, and that's of course the reason that you give them [the immunisations.]" (Complete immuniser, #13)
The risks associated with vaccination were also perceived as being rare but rather than imagining the worst in this instance, they believed that one would be unlucky to have severe reactions.
Thus, on balance, the risk of not immunising was not worth taking and a 'common sense' approach was necessary. They likened vaccination to taking other safety precautions. In terms of the theories of risk, respondents were perceiving the diseases as less familiar therefore dreaded and unknown, and therefore possibly overestimating their risk, and perceiving vaccines as more familiar, and possibly underestimating their risk.
In contrast, non-immunisers dreaded the unknown or uncertain outcomes of the vaccines with major fears being for invisible/undetectable/distant problems such as the vaccines causing leukaemia, SIDS, AIDS and brain damage. For these parents, vaccines were not only ineffective but they were actively dangerous to children's health.
"Brain damage, affecting limbs. I've read there are long term effects which we really don't know about. There are new diseases coming up. Polio is no longer life threatening but there are cancers and AIDS, long term effects on the immune system. And this is because we are interfering, causing genetic changes." (Non-immuniser #26)
"They don't work and they do harm. Putting these things into their bodies-germs and all the other products-mercury aluminium etc cannot be good. It suppresses/disrupts the child's immune system. It doesn't work and it is harmful. It's not just the risk of the side effects but the long term effects that we don't know about now. Basically so many things which we did in the past we now know better and think were barbaric. I would rather not do something to my child when we don't know what the long term effects might be. There have been studies which have related these to leukaemia and other cancers, asthma eczema and all sorts of things. I don't want to do that to my child." (Non-immuniser, #19)
On the other hand, severe outcomes of the diseases were believed to be rare or only a problem for children with poor nutrition, poor sanitation, and compromised immune systems. Non-immunisers believed it was unlikely that their children would suffer serious complications if they contracted these diseases because they had healthy immune systems.
"If D did get one of these diseases it wouldn't necessarily be catastrophic. Some people do get very sick or die but what we don't know, what they don't tell us is that those children were probably not well to start with. Fairly sick children are more likely to get serious long term effects. Their health before the illness is crucial to how their bodies cope with the disease." (Non-immuniser,# 19)
"…a rejection of the notion that children have to be immunised against these diseases because the disease itself will automatically be worse than the immunisation and a concern that the you know the vaccination itself can have problems." (Non-immuniser,# 21)
For one non-immuniser, who was not 'against' using conventional medicine' she believed her children were protected from disastrous consequences because they had easy access to modern medical intervention.
"Well I just can't see the need. If your child catches measles and… that develops into anything else… we're not stuck in the middle of the country without good doctors or hospitals…" (Non-immuniser, #29)
As reported previously, both pro- and anti- immunisers were concerned about vaccines overloading even healthy but immature immune systems
"I do sort of worry that we are vaccinating too much. I just worry about what it does to your immune system, to all our immune systems" (Complete immuniser, #14)
"He's still very thin but he's past the point of where I sort of see him [as] very vulnerable…like now I'm happy to give them to him." (Incomplete immuniser, #24)
"I mean I know she is a strong as a horse and I know she could have every shot under the sun and she'd be fine I just don't think it's a proper thing to do … in only two-month olds." (Non-immuniser, #29)
What is Familiar is not Dreaded
As would be expected from risk perception theory, diseases that were familiar to parents were not dreaded. Measles, mumps and rubella were not considered serious or life threatening by most parents irrespective of immunisation status. Most mothers were familiar with these diseases. They had had personal experience of these and remembered them as mild.
"[If] she happened to get measles, well I'm not that worried…because I had it and it was fine." (Complete immuniser, # 11)
The motivation to immunise against these diseases was, therefore, less than for diseases that were unfamiliar.
"…If it's a disease like measles, mumps, chicken pox, things like that you can let them get through fine, then if you got into meningitis, polio, well yeah, you'd have to think again." (Complete immuniser, #31)
"See, measles and German measles-I know that they brought the immunisation in because there are complications and there have been kids with complications. But see, like I remember from my generation a lot of us that was just the normal. Kids had the measles. So I am not so sure about those two whether it is important." (Incomplete immuniser, #15)
Measles, mumps and rubella were perceived as diseases that…'every child's got to get' and rather than avoid these diseases it was best to 'get them out of the way' as early as possible, especially as it was believed that these diseases were more serious in adults. There was no urgency in having their children vaccinated for these diseases.
Controlling Exposure or Outcome
The idea of control was also used by parents to explain their choice to vaccinate. One explanation for immunising given by complete immunisers was that they could not control their children's exposure to diseases and hence, it was safer to vaccinate. By doing so they could control, to some extent, the diseases that their children were at risk of contracting.
"I think the world of her and I thought if [I] can prevent her getting any of these diseases I will. (Complete immuniser, #7)
Incomplete immunisers believed vaccination would contain or reduce the effects of disease rather than prevent it completely.
"…kids still get measles and mumps so that's the silly thing isn't it really? It's only to prevent it, it can't cure, do you know what I mean? I've heard of kids still getting measles." (Incomplete immuniser #30)
"But it doesn't prevent the flu, you still get the flu but not a strong dosage." (Incomplete immuniser, #44)
In contrast, non-immunisers talked about being able to control their children's environment and therefore their exposure to disease. This non-immunising mother spoke of her reasons for vaccinating the family dogs:
"…because I cannot control what they [the dogs] do and what they eat. I can control [child's name]." (Non-immuniser, #19)
Decision-making Under Uncertainty
The explanatory power of ambiguity, outrage, omission bias and optimistic control was also examined in these interviews.
Insufficient Information - Ambiguity or Outrage
Perceived lack of information or insufficiency of information should either provoke outrage or hesitation from acting. Participants provided examples of both. Lack of information about susceptibility to vaccine side effects caused mothers in some instances to refrain from vaccinating their child or to hesitate about immunisation. One mother had hesitated to immunise her second child until she could be reassured that he would not have severe side effects from the vaccine. She had reason to believe he would be particularly susceptible to such side effects because he was 'not robust', he had many food allergies and his father had collapsed after immunisation as an infant. She expressed an equivalent concern about the child's susceptibility to disease especially as he had a school-aged sibling who could expose him to disease. The major reason for her hesitation was that no one had seriously considered her questions or considered her son's case on an individual basis.
"I want someone to look at him as an individual and I don't feel that they are the medical community….I don't want people making the decisions for me. …I want that information available so that I can make an informed choice" (Non- immuniser, #18)
Being aware that children could react to the MMR vaccine but not being told what that reaction was or what to expect also caused some hesitation with some mothers. Some mothers hesitated about immunising against Hepatitis B which was at the time of the study recommended for 'at risk' groups. It was unclear to these mothers what this phrase meant and if it applied to their children.
"[I] believe he should have the hepatitis one 'cause if he comes in contact with another child that's got it, but they say he's not at risk… but what makes him not at risk to get it? So I've been umming and aahing whether to get that one."(Complete Immuniser, #10)
The reverse of hesitating to act because of insufficient information was shown by others who figuratively 'shut their eyes' to the information about vaccine risk because it was unsettling.
"I think honestly speaking, this sounds stupid, but I think well, I don't want to hear it [about side effects], because it scares me. I know it might be stupid because you think, well you know they're s'posed to have it but if you start thinking well, what if you know if this happens and that happens well, then you wont immunise your children, so, there's a risk I s'pose."(Incomplete immuniser, #42)
Another response to a perception of insufficient information was anger or outrage. During the interview some mothers apologised for not being better informed about diseases.
Others were angry at their lack of knowledge about diseases and vaccines. This anger was not directed at themselves but at unspecified others. Anger was more often expressed by non-immunisers who believed that drug companies and doctors knew vaccines were not safe but kept the information from the public.
Omission Bias
Whether parents choose not to act, when action may cause harm, was explored. This was done with the use of two statements-describing whether (1) it would be worse to have your child die due to your action (immunise) or (2) it would be worse due to inaction (die from disease) (see Methods section for statements). Both statements presented uncomfortable possibilities to parents.
"You can't … I mean as far as I'm concerned you lose a child you lose it and it's painful either way I like to think that I've done the best I can to protect him from it um and if you know it's because of the injection well to some degree I'm fatalistic. I mean if it's meant to be it's meant to be. There's not much you can do about it but I would rather know that I've taken every precaution I can instead of you know leaving him open and susceptible to these things."
LB: Some people say they would vaccinate because they would feel worse if their child died from an illness which they could have prevented.
"Possibly I would sit in that category." (Complete immuniser, #1)
Most parents, irrespective of the immunisation status of their children identified more with the second statement, with only a few parents identifying with the first:
"I'd have to agree with that. I think if you've given birth to a perfect healthy child and then you've introduced foreign substances into their body which has then damaged them in some way, ah, yeah, I don't know, I don't think I could live with myself. Whereas if they've caught the disease that's kind of c'est la vie you know. I mean it's still awful. It's still a great tragedy, especially if you do lose them. But I think that's that. If you talk about metaphysics, I believe in metaphysics and all the rest of it, so I'd sort of say well, they're meant to be here, they're meant to experience it, they're meant to deal with it or not deal with it depending on what they're here for. So I have to take a philosophical approach. It'd be devastating." (Non-immuniser, #32)
Opposite to what would be predicted, many of the non-immunisers disagreed with the first statement and were adamant that this did not form part of their reason not to immunise.
FATHER: "I think you would be foolish to reach [that conclusion] I mean we're not foolish. I couldn't possibly say that I would be more comfortable with the you know…"
MOTHER: "The child dying or at least you know that he died from the disease."
FATHER: "Yeah a natural thing rather than induced. Yeah that's where the natural therapy philosophy goes too far…That would never be reason to [not immunise]."
MOTHER: "No, for not immunising him. Yes. I can't even relate to it as a distinction." (Non-immunisers #27)
The main reasons parents gave for not agreeing with the first statement was the perception that this scenario was unlikely to occur and, irrespective of immunisation status, most parents believed they had done everything they could to prevent disease. Thus, parents used their perceptions of the risks of the outcome of death from vaccine or the risk of getting the disease to explain their choice.
"No, well I'd feel, well I think that that's part of the risk, that there is a small risk that your child will have a reaction to the immunisation that's that's minimal compared to the risk of them getting the disease if you don't immunise so I'd always opt to immunise. (Complete immuniser, #5)
"I think you've got more, to me I think she's got more of a chance getting something not being vaccinated than, she's a healthy little girl isn't she?" (Complete immuniser,#7)
For those who agreed with Statement 1, they based this on their belief that there was a greater risk from vaccines so the first statement was the more likely scenario.
Optimistic Bias and the Illusion of Control
Participants' responses to the two hypothetical radio news items, was concordant with the theories that perception of risk may be influenced by an unrealistic optimism about one's own risks or unrealistic perception of control over one's life. The participants generally did not believe that they would be at risk from the flu. They believed themselves to be healthy, not susceptible to flu and that they were strong enough to fight it off:
"I tend to think that couldn't happen to me 'cause I'm young and healthy and couldn't possibly die of flu…Its a few cases [dying] and that happens." (Complete immuniser, #13)
Although the scenarios were written specifically so that those being interviewed fitted the 'at risk group', the participants did not identify with this group. They believed that the people who suffered serious consequences of flu were different to themselves. When they heard similar items on the news they assumed the people who were badly affected were old, frail, sick, had not been eating well, had poor immune systems, low resistance or were people who did not look after their health.
"It says doctors recommend all should be vaccinated especially those who are overworked, stressed and tired. Well of course they would be the ones whose immune systems would not cope." (Non-immuniser, #19)
All non-immunisers believed the risk of this hypothetical flu vaccine was higher than the risk of the disease but some immunisers also perceived high risk and little benefit from the vaccine. They related incidents of relatives who had bad experiences after receiving a flu injection. They believed that there were other ways of reducing the risk of flu such as taking supplements, improving lifestyle and avoiding people with the disease. Those who did believe their family to be at risk of this flu already received annual flu injections, with the occurrence of serious illness in these families prompting them to have flu vaccines.
Participants were also asked whether knowing someone who had the illness and had been very ill would affect their decision to immunise against this hypothetical flu. Again the response was that it would depend on the state of the friend's health and their habits: whether they were unhealthy or stressed, or careless of their health. While it would be more concerning to hear of a friend who was ill, most did not think it would mean they themselves were more at risk.
Perceptions of Risk: Comparing Children and Adults
In the second news item the 'at risk' group was children under five. All parents stated this item of news would be of greater concern to them. Their first action however, would be to seek more information from their health advisers before immunising. The risk of their children becoming ill was more important than the risk to themselves and all believed that their responsibility as parents was to do everything they could to protect their children. This responsibility made it stressful to make decisions for children because 'you can't afford to make the wrong choice', and one can't take risks for one's children where one might take risks for oneself.
"…[I'm] not prepared to risk them, I can control my risks." (Non- immuniser, #29)
"You've got to take the risk to prevent them getting sick." (Incomplete immuniser, #20)
"Take all the risk factors out of it and make sure they have a good life." (Incomplete immuniser, #34)
"Because I am so much more protective of their health than mine. I am concerned that they don't have the option of making choices as easily as I do and that is why I would like to make informed choices. And I feel like if I make the wrong choice for yourself and that is something that I wear, I am responsible for it. If I make the wrong choice for them it is more serious." (Non-immuniser, #21)
There was however, a reluctance to immunise. Many believed there was an over-reliance on immunisations and antibiotics and that they would only immunise if the disease was widespread or local (Statewide). If it were not widespread it was not worth the risk of preventative medicine.
Table 3 summarises the factors found to influence the decision to immunise and corresponding aspects of the explanatory theories used as a theoretical framework for this study. In this table we aim to show how the information from risk perception and decision making under uncertainty allow for a greater explanation or point to more nuanced action. For example, consideration of unfamiliarity with diseases would be part of the Health Belief Models framework of considering perceived severity. However the Health Belief Model does not explain or allow us to understand what people perceive as familiar or unfamiliar. One might think that if parents are not familiar with a disease they may not think it is serious, whereas subjective perception of risk would indicate that the reverse may be operating: unfamiliarity increases people's perception of risk. Similarly, where parents don't think their child is susceptible to the disease (a Health Belief Model construct), the idea of having 'optimistic control' helps to explain why they might think this.
The Meaning of Numbers - Parents as Lay Epidemiologists
In considering the news reports respondents were asked how many would 'several deaths' be to cause them to worry about the risks of the disease. It was difficult for the participants to respond to this question meaningfully and the production of these numbers was somewhat arbitrary; most were not comfortable giving their response, and many could not say. For instance, one couple said they could give an answer if it was needed to meet the research requirements but it would be meaningless. The numbers given varied from only one or two deaths, five in the State, or between one and ten percent. Others gave figures of more than fifty percent of those who got the disease would have to die for them to be concerned.
The question was useful, however, because it provoked participants to define the type of information they wanted in order to make sense of reports such as those they had just heard. For instance, they said their response to the number of deaths would depend on how similar to their own circumstances were those who had died. Did they live in Australia, Victoria or developed countries? Were those who were dying, previously healthy people or those who were sick and thus, more susceptible? Was it a familiar disease (flu) or rare (Ebola virus)? If it was unfamiliar it was frightening. If it was familiar (flu) they wanted to know the details of who it was who had died or suffered complications. Thus, it was not the statistics that were important for deciding on risk, but the characteristics of those who had the disease and the familiarity or unfamiliarity of the disease.