Family Practice Vol. 18, No. 2, 181-188
© Oxford University Press 2001
Decision-making in the consultation |
Choosing not to immunize: are parents making informed decisions?
Pharmacy Department, Lister Hospital, East and North Herts NHS Trust, Stevenage, Hertfordshire and
a Centre for Practice & Policy, School of Pharmacy, University of London, Brunswick Square, London WC1N 1AX, UK.
Dr S-A Francis, Centre for Practice & Policy, School of Pharmacy, 29–39 Brunswick Square, London WC1N 1AX, UK.
Sporton RK and Francis S-A. Choosing not to immunize: are parents making informed decisions? Family Practice 2001; 18: 181–188.
Received 4 February 2000; Revised 12 July 2000; Accepted 30 October 2000.
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Abstract |
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Background. Childhood immunization is an important aspect of childhood preventive health, world wide, with programmes such as the Expanded Programme on Immunization organized by the World Health Organization. Unlike other countries, the immunization programme is not compulsory in the UK, and the decision whether to immunize a child or not is parental.
Objective. The objective of this study was to explore the decision-making process of parents who have chosen not to have their children immunized.
Methods. This was a qualitative study, using semi-structured interviews with parents either in their own homes or at their places of work. The study was set in an inner city area with a high level of deprivation. The district immunization co-ordinator and health visitors within the area referred parents to the researcher. Parents subsequently were selected using purposive maximum variation sampling. Data were analysed using consistent and systematic review. An initial coding frame that was derived from the first few transcripts was revised and developed through its application to subsequent transcripts. The final stage of analysis involved comparing the data using the revised coding frame for drawing conclusions and verification.
Results. Interviews were completed with 13 parents. Parents discussed their perceptions of childhood diseases and immunization, and the risk–benefit analysis that occurred between the two. All parents identified the risk of side effects as a reason for choosing not to immunize. A proposed model of the decision-making process that represented the experiences of the parents in this study is presented. In response to the question of immunization, three actions were described by parents: a routine response, an emotional response and delaying the decision by entering a questioning stage followed by a cyclical process of seeking and evaluating information. Key to this model was a stage of reflection that most parents described irrespective of their initial action in response to the question of immunization. Parents also discussed their responsibilities in terms of the consequences of their decisions. Health professionals were perceived as providing unbalanced information that was an obstacle in decision making.
Conclusion. The parents included in this study had chosen not to immunize at least one of their children. Most parents felt they had made an informed decision, based on an assessment of the risks and benefits of immunization and an acceptance of responsibility for that decision. Health professionals were not perceived as providers of balanced information. It is therefore important that parents have easy access to accurate information concerning the pros and cons of treatment, and have the opportunity to discuss their concerns with health professionals.
Keywords. Childhood immunization, decision making, informed choice, parents' perspectives, vaccination.
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Introduction |
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In the UK, the childhood immunization programme is not compulsory, and therefore parental consent has to be obtained before the child is immunized. Although primary immunization uptake in England is relatively high (~95% of children are immunized by the age of 2 years, not including MMR),1 a small percentage of children are not immunized.
Several studies have investigated parents' reasons for choosing not to immunize using researcher-led questionnaires, structured and semi-structured interviews.2–5 The reasons stated most frequently were the preferred use of homeopathy, religious reasons, an unwell child and lack of belief in immunization;3 a belief that an active decision to immunize would lead to responsibility for any resulting side effects;5 advice not to immunize from a health professional, no clinic appointment for immunization and previous diagnosis with the disease.2,4 Another study selected parents who were ‘middle-class, well-educated, non-immunizers’ and found that ‘non-compliance’ developed over time, i.e. parents had started the immunization programme and stopped before completion, rather than deciding not to immunize from the outset.6 This study also highlighted the issue of financial incentives for GPs to reach immunization uptake targets and the conflict of interests this posed. It was suggested that not wanting to upset their personal relationship with the GP was an important factor in the parent's immunization decision.
Previous studies have either investigated parents' reasons for not immunizing their child using structured questionnaires or have chosen an ‘informed’ group of parents. Our aim was to explore the decision-making process through which parents made their decision not to immunize their children, without limiting the participants in terms of socio-economic group or to reasons for not immunizing.
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Methods |
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Selection of participants
The study site had a lower than the national average immunization coverage (i.e. <93% uptake at 12 months of age) and wards with high and low deprivation scores according to the Jarman index.7 Within the area, there was no separate register for children not immunized; therefore, a purposive sample of parents who had chosen not to immunize their children was identified through four stages:
Stage 1. The district immunization co-ordinator identified and contacted seven sets of parents from clinic records who had chosen not to immunize their children, five of whom gave written agreement to discuss the study with the researcher.
Stage 2. Health visitors identified and contacted 22 sets of parents who were willing to be contacted by the researcher to discuss the study.
Stage 3. The 27 sets of parents identified through stages 1 and 2 completed a telephone, screening questionnaire that asked about the main reason for not immunizing, and some of the characteristics included in Table 1. The characteristics were identified from the current immunization literature and had been associated with decisions concerning immunization.
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TABLE 1 List of characteristics used purposively to select parent sample
Stage 4. Responses to the screening questionnaire were used purposively to select parents from a range of backgrounds and experiences. Inclusion of participants who had a range of these characteristics was necessary to gain an in-depth understanding of the decision-making process of parents who had chosen not to have their children immunized. However, it was not an objective of the study to compare parents' reasons according to these characteristics. Fourteen parents were identified through this process who had different combinations of the characteristics listed. The remaining 13 parents were excluded on the basis that they had the same combination of characteristics of parents who had already consented to participate.
Stages 3 and 4 of sample selection occurred simultaneously with data collection and analysis.
Data were collected using an audio-taped, semi-structured interview on a series of open questions guided by topic areas, either at the participant's house or at their workplace. In homes where there was more than one parent, the interview was conducted with the parent who felt most strongly about immunization, as identified by the parents themselves. A decision was made at the outset not to interview both parents within one family unit: not all families would necessarily have two parents and the data generated from multiple sources concerning the decision taken with one child may require a different analytical process compared with the data from a single source. Lewisham Hospital NHS Trust Research Ethics Committee approved the study.
Analysis
RKS conducted and transcribed all interviews. The transcripts were analysed using consistent and systematic review.8 The analytical process required the development of an initial coding frame following the examination of two transcripts. The coding frame was revised following the examination of further transcripts, after which initial transcripts were re-analysed. A sample of data was analysed by a second researcher (SAF), and categories and coding were discussed and reviewed. This process was facilitated by the computer software package QSR-NUD*IST.
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Results |
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Of the 14 parents who had been identified during the recruitment process, 13 interviews were completed successfully; one set of parents withdrew from the study prior to the interview. The interviews lasted between 30 and 90 minutes.
Participants
Table 2 illustrates the personal characteristics of the participants. Twelve mothers and one father were interviewed.
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Parents' perceptions of childhood diseases and immunization
Parents discussed the childhood diseases covered by immunization and categorized the diseases into ‘serious’ (diphtheria, tetanus and polio) and ‘mild’ (mumps, measles and rubella). The perceived risk of catching ‘serious’ diseases, in the UK, was considered to be small, whereas the risk of catching ‘mild’ diseases was described as greater. Parents were also of the view that there was a high chance of adverse effects occurring as a result of immunization, especially long-term effects. Parents perceived that health education leaflets and campaigns exaggerated the efficacy of vaccines. They thought that health professionals were unwilling to acknowledge the perceived association between a vaccine and the occurrences of adverse effects experienced by children who had been immunized.
Parents' reasons for choosing not to immunize their children
Parents often cited more than one reason for choosing not to immunize their children, with the risk of adverse effects as a consequence of immunization mentioned by every parent. Other reasons included moral reasons, alternative methods of protection, practical issues and personal experiences of immunization.
Risk of side effects. . The risk of side effects was discussed in terms of long-term effects, short-term effects and ‘vulnerable’ children for whom there was an increased risk. Parents were of the view that there was a significant lack of research concerning the long-term effects of vaccinations.
"My main objection is that there's been no proper research done, there's been a few tests on animals which I don't believe are relevant to the effect on humans. I just believe it's a very hit and miss affair, nobody's actually done any research on the long-term effects of vaccinations. I mean there's well publicized very rare side effects of brain damage and cot deaths and things, but I believe that in the long term there are . . . many more side effects than people realize and, when you get older, things like ME, MS, autism, dyslexia, hyperactivity, just antisocial behaviour, asthma, eczema. I think even AIDS, leukaemia have been linked to vaccines. Meningitis has been linked to the measles vaccine, as has Crohn's disease." (P02)
Increased susceptibility to disease following immunization. . Several parents discussed children whom they knew had been immunized and had then appeared to have an increased susceptibility to infections. Immunization was therefore seen as a contributory factor to disease.
". . . it's the number of small-scale sort of persistent infections that children who've had full courses of vaccinations have developed . . .' (P02)
However, other parents had not observed this association.
"I mean looking at [first child] who has had his vaccines and looking at [second child], I would say that [first child] was a much healthier baby. [Second child] has been sick every two to three weeks, throughout the winter months, he's been a really sickly child. So I can't really say oh he hasn't been vaccinated and he's a model child, he's had no eczema, he's had no sickness, no I can't, because [first child] was and he'd had all his vaccines." (M11)
Moral reasons. . One parent had discovered from a newspaper article that the rubella vaccine had been developed originally from an aborted foetus and therefore the use of this vaccine conflicted with her moral principles.
Alternative protection. . Parents discussed alternative methods of protection against childhood diseases, such as homeopathy, diet and a belief in God.
"I think if he gets the disease I think we have to trust in God to protect him you know and that's how I feel." (M10)
Parents who used homeopathy preferred not to use the homeopathic immunizations, but turned to homeopathic treatments when the child was ill.
Practical reasons. . A small number of parents mentioned practical issues, for example the lack of time available to attend clinic appointments after returning to work full-time. Another discussed the competing priorities for a working parent that did not allow sufficient time to consider the pros and cons of immunization, and therefore a default decision of not immunizing was taken. Choosing to stay at home with the child and therefore a perception of being able to control the pathogens introduced to the child was also presented as a reason not to immunize.
"I suppose because I was at home with him, for the first, his first year of life, I knew that he wouldn't be exposed to anything, he wasn't going to a nursery or a child minder, . . . I knew that to some extent I had some degree of control over the people he was exposed to and the germs he was exposed to." (M11)
Personal experience. . One parent discussed her own childhood experiences of not being immunized as a result of the family having a negative experience with immunization, and that this had not led to any adverse consequences for her own health.
Making the decision not to immunize: the process
Some parents described the decision to immunize a first child as a routine action to which they had given little thought. However, for many parents, the decision of whether to immunize their child or not was an involved and lengthy process comprising a number of stages: a trigger, a questioning stage, a thinking stage and information hunt, the dilemma, the decision and reflection. Figure 1 is a proposed model of the decision-making process that represents the experiences of the parents in this study.
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The trigger. . Each parent in this study identified at least one occasion where an event had triggered the question of immunization. The triggers included the issue being raised by the homeopathist, reading an article in the newspaper or being told by a friend that immunization involved choice. However, being made aware that immunization was a choice, introduced anxiety for parents.
"Well, to be honest with you, had I not been, dare I use the word, alerted by friends, who said have you thought about your views on immunization? I thought it was compulsory until people told me it wasn't. I didn't actually realize I had a choice. Once I did realize I had a choice, I became extremely anxious because I then realized that it was yet another decision." (M09)
The trigger led to three alternative actions described by parents: a decision based on a routine response to the trigger, a decision based on an emotional response to the trigger, or delaying the decision by entering a questioning stage followed by a cyclical process of seeking and evaluating information. For the first two pathways, information was sometimes sought after a period of reflection to address unanswered questions.
"Once you got over the emotional response and the baby gets older and you become more confident then you've got time to read and try and search out the more rational arguments for and against." (M01)
The routine response. . The routine decision made by some parents to immunize their first child was described by parents as uninformed, based on the advice of health care professionals and wanting to do things ‘right’. Several parents in this study were of the view that a large percentage of parents chose to immunize their children as a matter of course, without considering the pros and cons.
The emotional response. . Parents also described an emotional ‘instinct’ that was often used as the basis for the decision to immunize or not.
The questioning stage. . For other parents, a risk–benefit analysis was undertaken. The questioning stage was a natural starting point for making an informed decision, and parents suddenly found that they had many unanswered questions.
"And then I had a question mark over all the other vaccinations, I thought well you know if that comes from an aborted foetus where do the others come from you know, so I started to ask different questions." (M10)
The thinking stage and information hunt. . The thinking stage was interwoven with the information hunt. Once parents started questioning, they then started a cyclical process of seeking and evaluating information, which often led to the search for further information and so on. An important aspect of this stage was the parents' needs to understand the information; one parent compared the information given by health professionals with that received from the ‘Informed Parent’ group:
". . . [the health professionals] gave me a lot of stuff which basically I couldn't understand most of it, it was all really medical obviously and a lot of it went over my head. Whereas I suppose when I read stuff from the Informed Parent you know it's much more understandable." (M02)
The dilemma. . The thinking stage and information hunt could last for several months. However, parents eventually reached a point at which they felt they could assess the risks and the benefits from the available information.
"Polio was obviously something, if you know you prevent a real paralysis which is a lifelong problem, it's not something that is easy to get rid of, but it's so unlikely to happen and the side effects are so risky I mean that I think it's just not worth doing I don't think." (M06)
The decision. . Parents who had used the systematic pathway, described their decisions as ‘informed decisions or choices’.
"Now having said that [second child] is going to have some of his immunizations but because I've read around and I am, I am informed now I've chosen the vaccines he's going to have, which are the ones which you know any doctor who was having their child immunized would choose to have themselves because they are the better ones." (M11)
Reflection. . After a decision had been made, some parents reflected on their decisions.
"I'm not fully happy with not immunizing, because I would hate my children to get an awful disease, on the other hand, I think for me, it's the lesser of two evils." (M05)
When parents discussed travelling abroad, many parents said they would re-evaluate the risks of immunization. This suggested that where the decision has been made, factors may change, and the process is cyclical. All stages of the decision process had the potential to be influenced by other factors, for example other parents, health care professionals, the media, personal experiences, literature, complementary practitioners or parents' views, beliefs and emotions.
Making the decision to not immunize: the players
Parents perceived themselves in a number of roles: decision maker, protector and being responsible for the consequences of their decisions. Two aspects of responsibility were discussed: responsibility for any side effects if immunization was chosen, but equally responsibility for the childhood disease if immunization was rejected.
"So it's not as if I'm dead against it I just don't feel I want to be the one to say yes OK do it and then if they do suffer any side effects, I mean I know there's very minor side effects but if they do suffer serious side effects, I don't want . . . to be the one to give the permission for that." (M03)
"If they do get ill, it's, I'm going to feel responsible, whether it's my fault and you know totally responsible basically, whereas if I had them immunized and then they got sick, then I could sit here and blame everybody else, and say everybody else told me . . ." (M02)
However, some parents who had chosen not to immunize their children were confident about their decision, and felt that they would have to deal with the disease if it occurred.
"And people have put the question to me, what would happen if she caught the disease and died, that's something I'd have to live with you know, but I'd feel that I'd made the right decision . . . morally or otherwise you know." (M10)
Other parents resolved the dilemma by considering disease a natural event, and that the responsibility associated with side effects was worse than that associated with catching the disease.
"I think I would feel worse if anything happened to him as a result of being vaccinated, than if anything happened to him as a result of catching a childhood illness, I'd feel a lot worse if I'd had him done and he was brain damaged or he became autistic . . . because a childhood illness is a natural thing it's something which has always been and always will be, which you know we are manipulating our environment all the time with our medical interventions." (M11)
Parents who had made the decision not to immunize also discussed taking responsibility for avoiding disease.
"I suppose and I mean I think if you're not going to immunize you do have to take the responsibility on that you've decided not to do that, and you have to do as much as you can to keep yours, to keep your children healthy and to, and to look at alternatives and to keep yourself informed." (M07)
The roles of health care professionals, friends and family were discussed. Friends and family often gave advice about immunization, both positive and negative. Where their views differed from those of the parents, this was regarded as a source of pressure and sometimes led to emotionally charged discussions about immunization.
"It's almost like my mother made it compulsory not to have, you know, she's near enough brain washed me to be honest, not to have them done [immunized]. And then of course, you go along, you find your own little reasons for not doing it." (M03)
It was also perceived that the health professionals, in particular the health visitor and GP, had important contributions to make to the decision-making process, through the provision of balanced information. However, many described a lack of information representing both sides of the argument.
"And when I've spoken to doctors and things, they have a clinic and that, they haven't known the other side of it, so they are just dismissing it out of hand and saying oh you should do this and you should do that." (M02)
The issue of GP target payments was widely discussed by parents and, for many parents, this was perceived as a barrier that prevented GPs providing balanced information.
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Discussion |
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This study aimed to explore the decision-making process of parents who had chosen not to immunize their children. All the reasons for choosing not to immunize illustrated in this study may be corroborated by previous research:2–5 risk of adverse effects, use of homeopathy, religion, practical issues and a lack of belief in immunization. However, the parents included in this study also highlighted that it was not any one issue but a combination of factors that influenced their decisions, which previous research has not discussed.
The decision-making process was explored in-depth with parents. Figure 1 
illustrates the complex interplay of factors, which can take place over several months. Previously, two models have been used to predict the health behaviour of parents in relation to childhood immunization; the health belief model9,10 and the protection of motivation theory.11,12 The health belief model9 has four components based on the subjective perceptions of the individual performing the behaviour (e.g. the parent making the decision to immunize): perceived susceptibility, perceived severity, perceived benefits and perceived barriers. The model suggests that the perceived barriers and perceived benefits of a health behaviour are weighed against each other, forming a type of risk–benefit analysis, and that additional factors (‘cues to action’) such as internal or external triggers will also affect the health-related behaviour of that individual. The protection motivation theory11 suggests that environmental and personal factors integrate to form a potential threat. The appearance of the threat (e.g. faced with a choice about immunization) then stimulates two cognitive processes: threat appraisal (e.g. evaluation of factors influencing the decision to immunize or not immunize) and coping appraisal (e.g. evaluation of the belief that immunization will reduce the likelihood of infectious disease and that an individual can be immunized successfully balanced against factors such as side effects and inconvenience).
The proposed decision-making model presented in this paper (Figure 1) has similar features to the previous models: the processes of risk–benefit analyses, cues to action, coping appraisal and resulting decision. However, our model builds on previous models by highlighting the reflective element that follows the decision, allowing feedback and re-evaluation of the decision. Although immunization may mistakenly be considered to require a one-off decision, this was not the case with the sample of parents included in this study. The parents in this study were of the view that the information available and factors affecting them at that particular time influenced their decisions. Childhood immunization is a programme of preventative care (from the age of 2 months up to the age of leaving school) presenting opportunities to re-examine issues at each vaccination. Parents with more than one child are also presented with a new cycle of decision making with a subsequent child's immunization programme. Previous research has suggested that once a decision not to immunize has been made, it is unlikely to be changed.6 However, the recruitment methods used in the Roger and Pilgrim's study6 were not detailed in the publication and so limited comparisons may be made with the sample of parents included in our research.
In this study, most parents felt that they had made an informed decision, based on extensive reading and discussion with other people. The decision often had involved an assessment of the risks and benefits of each option and the acceptance of responsibility for that decision. However, many parents felt that health professionals should provide more balanced information, and discuss with parents that immunization is a choice. These findings support the research by Rogers and Pilgrim,6 who found that health professionals were perceived as an obstacle to making an informed choice, rather than a source of advice and information. A recent paper has described the efficacy and safety of vaccines and acknowledged that health professionals have a responsibility to provide parents with accurate information on which to base their decision.13 Advances in information technology will ensure the accessibility of information to those seeking it. However, health professionals need to be ready to help in the assimilation of positive and negative information, and welcome their role in aiding individuals to make informed decisions concerning their health.
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Acknowledgments |
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We are indebted to Beth Taylor and Dr Anne Nesbitt for their support and advice in organizing the project, and to all the health visitors and parents for their contributions. This research was undertaken in part fulfilment of the requirements for the Master of Science Degree in Clinical Pharmacy at the School of Pharmacy, University of London.
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References |
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1 Department of Health. NHS Immunisation Statistics, England: 1998–99. Statistical Bulletin 1999/28. London: Department of Health, 1999.
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6 Rogers A, Pilgrim D. Rational non-compliance with childhood immunisation: personal accounts of parents and primary health care professionals. In: Uptake of Immunisation: Issues for Health Educators. London: Health Education Authority, 1994.
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Markland RE, Durand DE. An investigation of socio-psychological factors affecting infant immunisation. Am J Public Health 1976; 66: 168–170.
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Strobino D, Keane V, Holt E, Hughart N, Guyer B. Parental attitudes do not explain underimmunisation. Pediatrics 1996; 98: 1076–1083.
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Bedford H, Elliman D. Concerns about immunisation. Br Med J 2000; 320: 240–243.
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