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Meningococcal B: tell me everything you know and
everything you don’t know. New Zealanders’ decision-making regarding
an immunisation programme
Paul B Watson, Judy Yarwood, Kim Chenery
The success of the Ministry of Health’s recent
meningococcal B (MeNZB™) immunisation
programme was dependent upon parents choosing to immunise their children. And a
high level of vaccine uptake was a priority in preventing
disease.1
Prior to the MeNZB campaign, literature indicated New
Zealand parents preferred to visit their general practitioner for
vaccinations.2 Moreover, a significant number
of parents had low confidence in vaccination and did not trust received
government vaccination information.3,4
Several studies have identified variables that seem to
influence vaccination uptake including the use of combination vaccines and
access to information.5,6 However, these
studies insufficiently explain individual decision-making processes.
Relatively little qualitative research into parents’
decision-making about childhood vaccination has been carried
out.7 This study aimed to
explore how parents made decisions in relation to their child(ren)’s
participation in the MeNZB immunisation programme and the factors that
influenced their decisions.
MethodsFor this qualitative descriptive study, recruitment was
through advertisements in two free community newspapers delivered to
Christchurch households. We sought families who consented, and who did not
consent to have their child(ren) receive the meningococcal B immunisation.
Inclusion criteria required participants to be:
Ethical
approval was granted by the Upper South B Regional Ethics Committee and
Christchurch Polytechnic Institute of Technology Ethics Committee. Data
collection took place between November and December 2005. Semi structured
interviews focused on parent’s descriptions of their decision-making
process. Additional questions prompted for details about sources and quality of
information and other factors that underpinned decision-making.
All interviews, conducted at a location and time
convenient to participants, were audiotaped and lasted between 45 to 60 minutes.
Sociodemographic data including parental age and gender, ethnicity, education
levels, income, family size, and their child(ren)’s previous immunisation
history were also collected.
Transcripts of each audiotaped interview were initially
coded line by line by two of the three authors. Codes focussed on actions and
events in the parents’ narratives. All three authors then constantly
examined the emergent codes, grouped these into thematic categories and compared
them across the two groups. Similarities and differences in the decision-making
processes were then evaluated.
ResultsInterviews were conducted with 21 parents, 10 who had
consented to immunisation, 10 who had not, and 1 who had decided to immunise
only 1 of their 2 children. Demographic data are presented in Table 1. The
majority (18) of interviewees were mothers, 2 were both parents, and 1 was a
father. Both groups represented a range of ethnicities and socioeconomic
situations.
Of the parents who consented to the MeNZB vaccination, 90%
had children who were fully immunised and 10% partially. Conversely, of the
parents who did not consent, 40% had not previously immunised their children,
and 30% only partially.
Despite reaching different decisions, the majority of
parents followed a similar decision-making process consisting of four non-linear
phases: a gut reaction, a trigger, reconnaissance,
and risk analysis.
A gut reaction—Parents in both groups
experienced a gut reaction. They typically described, often in the absence of
any specific information about the vaccine, a decision they would probably
make:
We pretty much knew we would
get it done when we heard about it (Participant 1: immuniser)
Everyone around me was
saying ‘yes’ and I was actually feeling like ‘no’
(Participant 19: non-immuniser)
Although two parents subsequently changed their mind, most
remained committed to this initial decision. All parents expressed concern about
the seriousness of meningococcal disease, however those parents who chose not to
vaccinate believed there were other protective measures and perceived their
child to be less susceptible:
I have been a LaLeche League
leader so to me breast feeding is the ultimate in protecting our
children’s immune system (Participant 9: non-immuniser)
Parents who chose not to immunise were also more concerned
about vaccine safety and efficacy.
Table 1. Demographic characteristics of the
study participants
Note: To ensure anonymity, the
demographic characteristics of the one participant who decided to immunise one
child and not the other have been withheld.
A trigger—Most parents identified a
trigger, either a person, an event, or the media confirming local availability
of the vaccine. The trigger for most of those with school-age children was a
consent form sent home from school. Triggers varied for parents of pre-school
children, some mentioned talking to or receiving notification about vaccine
availability from their general practitioner. Several parents referred to the
media as a trigger. Information disseminated by the media was approached with
scepticism by most parents:
I mean I’m not silly
and I know that the media presents what they want. They want a newsworthy story
that someone’s going to watch so they are always going to promote the
worst or best of something (Participant 16: immuniser)
Several parents were influenced in some way by Baby
Charlotte’s story. An emotional response served to change one
parent’s mind in favour of vaccination:
I decided not to...I
didn’t know much about it and the immunisation has only been around or a
wee bit not like the other immunisations that have been around for years, so I
actually watched the television of that little girl who lost her arms and legs
and you know I thought ‘Yeah I might get them done’ so I did
(Participant 6: immuniser)
Others were more cynical and believed intense media coverage
of Charlotte’s story and her father’s presence at public meetings to
be a deliberate Ministry strategy designed to influence vaccine uptake:
He [Peri Bisman] showed a
lot of photos, a slide-show type thing...by the time he’d got to the end,
it was like he was trying to brainwash you into having it done, not so much
because it happened to his child but you really got the feeling that he was
being paid by the Health Department to be there (Participant 10: dual
decision)
Whatever the trigger, these were a cue to action and a
reconnaissance phase.
Reconnaissance—Characterised by a
‘hunt’ for information about vaccine safety and efficacy,
reconnaissance was undertaken in a variety of ways including reading medical and
scientific articles, surfing the Internet, and both watching and reading
populist media.
For many parents reconnaissance encompassed wanting to
‘hear’ a family member, friend or trusted health professional
thoughts about vaccination. This information was influential for some parents in
that it clarified information from other sources, confirmed their own thoughts,
or gave them the confidence to act:
The nurse at my kids’
doctors, she’s just brilliant. She’s got little ones of her own so
she’s really up with it and I talked to her about her son getting
immunised so that kind of helped out a bit too...it was more the side-effects, I
thought yeah ‘I can handle that’... just to know from someone that
has had their kids done to actually know what happens (Participant 6:
immuniser)
Parents wanted accurate, balanced, and referenced
information from Ministry of Health officials and health professionals, however,
most reported dissatisfaction and mistrust with ‘official’
information received:
If they were able to say
‘we haven’t done it’, just come out and say ‘we
haven’t done it’, be honest about it, but they couldn’t be and
I think that is why they had to make such a media deal of it because they
didn’t have the answers (Participant 3: non-immuniser)
Parents who consented to vaccinate, and those who declined,
frequently described the Ministry of Health media publicity as ‘scare
mongering’, ‘controlling people through fear’, ‘fear
driven’, ‘not balanced’, and ‘one-sided’. Even
those with a more positive view made comments such as ‘presenting the
Government’s received view’ and ‘needing in some way to twist
it to force people to immmunise’.
Considerable dissatisfaction was expressed from both groups
of parents with school-age children. Parents were concerned about the graphic
nature of information given directly to children at school, in most cases
without consent. This heightened fear amongst some children and parents felt it
undermined their choice:
They came home from school
having seen the promo, they actually sent a video around the schools, they
showed it to children as part of the health programme unbeknown to parents and
they all came home within 2 days of each other saying, “Oh I’ve got
to have this injection or we’re going to get this horrible disease. So
really faced with the fear of the children, I felt like I didn’t have a
choice (Participant 16: immuniser)
Concern was also voiced about the incentives used to
encourage children to return consent forms within 3 days, and again parents felt
under undue pressure to make a quick decision. Overall parental sentiment and
need for information was summed up in the words of one parent who said:
...just tell me everything
you know and everything you don’t know (Participant 21:
immuniser)
Risk analysis—Balancing the risk of
contracting meningococcal B versus the risks and benefits of the vaccine was
interwoven with reconnaissance. Importantly for both groups this process was
taken seriously, was focused on individual children and was influenced by
multiple factors relevant to each child, family experiences, and their context.
The perceived seriousness of meningococcal B and the
perceived risk of contracting the disease were significant considerations for
both sets of parents. Those who consented tended to have a strong perception of
the seriousness of the disease particularly in relation to the diagnostic
difficulties, the sudden onset and the fatal or disfiguring consequences. In
consenting parents, the perceived seriousness of the disease was more dominant
than the perceived risk of contracting the disease. Vaccine efficacy and safety
issues seemed less of a concern.
In contrast, parents who declined immunisation may or may
not acknowledge the seriousness of the disease but tended to perceive a lower
risk of contracting the disease. Most did so by either denying the existence of
an epidemic or stating that it was already in decline. Other reasons given
included geographic location, ethnicity, socioeconomic status, health status,
nutrition e.g. breastfeeding, and prevention measures such as not sharing drink
bottles. For these parents, vaccine efficacy and safety issues were a dominant
theme. They commonly referred to the lack of research, uncertainty about the
number of vaccinations required to have an effect, and uncertainty about the
duration of the coverage and the percentage of people protected by the vaccine.
Vaccine safety issues related to both short-term and
long-term side-effects and the fact the vaccine only covered one strain of
meningitis. However, perceptions were not always fixed, even after a decision
had been made:
She had no adverse effects
to any of the jabs and that was another factor that if she had had a bad
reaction to any of them I would have pulled her out of the programme
(Participant 12: immuniser)
Having made a decision, the majority of parents continued to
reflect on it. Most voiced a degree of uncertainty about their decision:
100% [confident] no but
I’d say 90% we’ve done what we can to protect our
children...hopefully there will be no side effects, no long term problems out of
it (Participant 15: immuniser)
It’s a nerve-wracking
decision all round, just making the decision about vaccination and I did at
times feel like you’re damned if you do and damned if you don’t with
this (Participant 11: non-immuniser)
DiscussionOur findings are similar to results from other qualitative
studies suggesting parental beliefs about immunisation influence
decisions.8–10 Of the parents in our
sample who previously believed in fully immunising their children, only 30%
declined the MeNZB vaccine. Nevertheless our study has shown the decision to (or
not to) vaccinate was far from routine. These results concur with a 1998
Australian study that found perceptions of susceptibility to disease and vaccine
safety are dynamic.8
The biggest mass immunisation programme undertaken in New
Zealand, MeNZB, confronted unique challenges. To affect the incidence of
meningococcal disease in New Zealand, high levels of vaccine uptake were
required, because immunisation with serogroup B meningococcal vaccines did not
seem to reduce nasopharyngeal colonisation by the
organism.1
National telephone research about the MeNZB vaccine
conducted prior to roll-out showed that while disease awareness was high,
perceptions of personal relevance was considerably
lower.11 Not surprisingly Ministry of Health
publications and the mass media campaign surrounding the programme sought to
address this issue by raising the perception of risk.
Statements in the Ministry fact sheets such as
‘everybody in New Zealand is at high risk of contracting the
disease’ and ‘the trials have found that the vaccine was safe’
did little to raise individual perceptions of risk for most parents in this
study or satisfy their concerns over vaccine safety and efficacy.
Indeed, recent New Zealand research indicates that
information from official sources openly promoting immunisation is viewed by
many parents as biased.12 And in this study
while parents who chose not to immunise were more likely to express a distrust
of official information, those that did immunise were not prepared to take it at
face value either.
Mass media campaigns to promote vaccination have been shown
to be effective and the legitimacy of using stories and images of children
affected by diseases to convey the seriousness of vaccine preventable diseases
has been argued.13,14 Media coverage of
Charlotte’s story heightened perceptions of risk and arguably was intended
to illustrate the irrationality of choosing not to vaccinate. For a few parents
in this study this strategy appeared to have the desired effect. However, our
data also shows for other parents it had the opposite effect and may have
undermined public trust in the Ministry of Health regardless of whether parents
agreed with the immunisation or not.
Public trust is essential for immunisation programmes and
should be protected.15 Any undermining of trust
could have negative consequences for future programmes.
School-based immunisation programmes have been shown to be
effective.16,17 Our data indicates both sets of
parents had concerns about the graphic nature of information given directly to
children, the short-time frame for return of consent forms, and the use of child
focussed incentives.
Interestingly, prior to the meningococcal B programme the
use of incentives in schools was reported as improving the rate of returned
consent forms.2 However, some parents in this
study felt child focussed incentives, used in some schools to achieve a quick
return of consent forms compromised their ability to make an informed
decision.
The Ministry of Health, in the context of a 14-year epidemic
of group B meningococcal disease, initiated the MeNZB immunisation program. For
parents in our study intricacies within the family context were just as (if not
more) important in reaching a decision. Therefore parents’ perceived
balance of risk for their individual child may not coincide with the health
authorities balance of risk at the population
level.18
The parents we interviewed all followed a similar
decision-making process, were influenced by similar factors and sought
information about the MeNZB vaccine from a variety of sources.
Limitations of this study were its small sample size and
single geographic location. Despite these limitations, a qualitative method
allowed us to gather comprehensive information from parents.
ConclusionDespite different outcomes, most parents experienced
comparable influences, and followed similar decision-making processes, which
have been identified in previous studies regarding parental decision-making
related to childhood immunisations.
Risk analysis (one of four interwoven decision-making
phases) demonstrated that whatever decision is made, parents do not undertake
the process lightly. Indeed, decisions regarding their children’s
wellbeing were made with considerable thought, questioning, and discussion. The
use of fear, however, to encourage immunisation in the context of this campaign
was not received favourably and requires debate.
Furthermore, parents’ generally negative view of
communication strategies used at this time also has implications and deserves
consideration for future mass immunisation programmes.
Competing interests: None.
Author information: Paul B Watson, Senior
Lecturer, School of Nursing, Christchurch Polytechnic Institute of Technology
(CPIT), Christchurch; Judy Yarwood, Principal Lecturer, School of Nursing,
CPIT, Christchurch; Kim Chenery, Clinical Nurse Educator, Child Health
Cluster, Christchurch Hospital, Canterbury District Health Board,
Christchurch
Acknowledgements: Funding for the study was
provided by the Christchurch Polytechnic Institute of Technology, Academic
Research Committee. We also thank the parents who generously gave their time to
tell us their experience of making decisions for their children about the MeNZB
vaccine, as well as Lisa Phillips who transcribed the interviews.
Correspondence: Paul Watson, Senior
Lecturer, School of Nursing, Christchurch Polytechnic Institute of Technology,
PO Box 540, Christchurch; Fax: (03) 940 8019; email: watsonp@cpit.ac.nz
References:
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