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    What we know about parents’ decisions about vaccines: Reviewing the research

    By Lauren Rockliffe, on 30 August 2016

    Vaccines help prevent infectious diseases. It is important that most people get vaccines and if enough people are vaccinated, protection is also given to people who have not been vaccinated. This is known as herd immunity. Even though most children do get the vaccines they are offered, there are still some areas in the UK where there have been outbreaks of disease.

    In general, parents in the UK need to give permission for children under the age of sixteen to have a vaccination. Whilst many parents choose for their children to be vaccinated, some parents decide not to. It is important for us to understand why parents might decide not to vaccinate their children, so that we can address any issues that might be stopping parents from vaccinating. Only once we understand the reasons for non-vaccination can we start to think of ways to tackle them, to try and increase uptake of childhood vaccinations. The best way for us to find out what these issues might be is to review existing research in this field, much of which has been qualitative. Qualitative research aims to understand a topic by finding out people’s opinions, attitudes, motivations etc. This is often done by conducting interviews or focus groups.

    In our review, published this week, we aimed to do just this; to look at qualitative studies in the UK that had looked at vaccines for children, to try to understand what might influence parents’ decisions about vaccination. We reviewed a total of 34 studies. The results of each of these studies were then re-analysed to find common themes between them.

    We found that parents make decisions about vaccination in two different ways: some made decisions automatically, and others made more intentional decisions.

    Automatic decisions

    Automatic decisions are decisions that are made by parents without too much thought. When parents made these types of decisions they were often happy to go along with the advice about vaccination that was being given to them from health professionals. Parents also made automatic decisions when they did not feel like they had a choice and/or when they were copying the decisions other people had made about vaccinating their children. These types of decisions are often made quickly and parents did not appear to weigh up the pros and cons of vaccination when making them.

    Intentional decisions

    Intentional decisions are decisions that parents have taken more time to think about. When parents made these types of decisions they often weighed up what they perceived to be the risks and benefits of vaccinating and often judged how appropriate it was to vaccinate their child based on other people’s advice or experiences. Many parents making intentional decisions felt responsible and/or were worried about being judged by other parents for the decision they were making. Parents’ emotions had an effect when making intentional decisions, as did the media and what was being reported about vaccination.

    Additional factors

    The media affected the trust that parents had in information they received about vaccination, and in medical professionals, the government and the NHS. Trust (or a lack of trust) was important for parents when making both automatic and intentional decisions. Practical issues, for example travelling to the vaccination clinic, having a lack of time or being unable to get an appointment, also affected the decisions of parents who had decided to vaccinate, regardless of whether they had made an automatic or intentional decision.

    What does this tell us?

    Many parents who made automatic decisions had decided to vaccinate their child. However, some of these parents had decided to vaccinate because they felt pressured to do so. Other parents had copied other people and not vaccinated their child. Some parents who made intentional decisions had involved others in their decision-making, by speaking to family members, friends or work colleagues.

    The findings of this review highlight how important social factors are for parents when making decisions about vaccinating their child. The impact of one child not having a vaccination may go beyond just that child being unprotected, as that decision may influence other parents’ decisions. By understanding more about the decisions parents make about vaccinating their children we will be in a better position to start to think of things we can do to encourage more parents to give permission for their children to have childhood vaccinations.

    A new jab to prevent cancer

    By Alice Forster, on 26 May 2016

    What is HPV and how is it linked to cancer?

    Around 5% of all cancers worldwide are caused by the human papillomavirus (“papi-lo-ma-virus”) or HPV. More and more people are aware that HPV causes cancer of the cervix (the neck of the womb) in women, but HPV can also cause cancers of the penis, anus, vagina, vulva and mouth and throat. The virus is spread by skin to skin contact, including sexual contact. There are many different types of HPV. Some types cause cancer, while others cause warts that people get on their hands, feet or genitals and these types do not cause cancer. The types of HPV that cause cancer are so common that HPV is the most frequent sexually transmitted infection in the UK. In most people the cancer causing types of HPV cause no problems and the virus goes away on its own. However, some people do not get rid of the infection. If the infection stays for many years it can turn into cancer.

    HPV vaccines

    In the late 1990s and early 2000s two vaccines were developed that protect against the two types of HPV that cause around 80% of cervical cancers. Girls who are aged 12-13 years old in Year 8 at school are now offered one of these vaccines as part of the childhood immunisation programme. The vaccine that is used as part of the UK programme also protects against two types of HPV that cause genital warts. Recently, a third HPV vaccine called the nonavalent or 9-valent vaccine has been licenced for use in the UK, as well as in the USA and elsewhere in Europe.

    The new 9-valent vaccine

    The 9-valent vaccine, as the name suggests, protects against 9 types of HPV – that means protection against an extra 5 HPV types compared with the other two vaccines. These 9 HPV types cause up to 90% of cervical cancers, so an additional 10 in every 100 cervical cancers could be prevented.

    Where does behavioural science fit in?

    The invention of these vaccines is a fantastic step forward towards wiping out cervical cancer, but this can only happen if people get the vaccine and we know that many people are not doing so for a variety of reasons. The benefits of the HPV vaccine will be greatest if most people get the vaccine, however as with all healthcare decisions, the decision to get the HPV vaccine should be an individual informed choice. In our new paper, we look at how we can use our understanding of why people don’t get vaccines, specifically the HPV vaccine, to try to increase uptake of the 9-valent vaccine.

    Reason 1: Will the 9-valent vaccine overload the immune system?

    Some parents worry that vaccines overload the immune system and others worry that particular ingredients make vaccines risky for their children. Parents consider combination vaccines to be risky for both of these reasons as they are seen as containing a greater number of ingredients. The 9-valent vaccine is not a combination vaccine, but it protects against 9 types of HPV compared to 2 or 4 types of HPV with older HPV vaccines and might be seen as more dangerous. However, parents should be reassured that the 9-valent vaccine is safe and has been licensed for use in the UK, USA and the rest of Europe. There is also no evidence that vaccines overload the immune system.

    Reason 2: ‘I’ll wait to decide until there’s more evidence that it will protect my daughter in her twenties’

    Many parents have said that rather than giving their 12 or 13 year old daughter the vaccine (as recommended) they would rather wait until their daughter became sexually active so that she may be protected when she ‘really needs it’. However, the HPV vaccine is likely to give protection against HPV for decades and works better if it is given at a younger age. Parents may also find it difficult to get the vaccine for their daughter outside of the routine immunisation programme. Parents should be reassured that 12 to 13 is the right age for their daughter to get the 9-valent vaccine.

    Reason 3: ‘It’s so new, the government can’t know about the long-term side effects’

    Because the vaccine is relatively new, some parents say that they are worried that the vaccine has not been monitored for long enough. However, vaccines go through many years of testing before they become available to the public. There is no evidence that the HPV vaccines are unsafe or cause side-effects other than temporary mild/moderate pain, swelling, redness and itching.

    What else can be done to increase uptake of the 9-valent vaccine?

    Scientists have looked at all of the published research studies that have tried to improve uptake of HPV vaccines. These show that uptake can be improved by doing things like sending reminders to parents and running school-based immunisation programmes like we have in the UK. In the USA, where the vaccine is given in a clinic setting, parents are most likely to get their daughter vaccinated if a doctor recommends that she has it. The language that the doctor uses to make that recommendation is also important.

     

    The 9-valent HPV vaccine is a fantastic opportunity to prevent even more cancers that are caused by HPV. Parents can be reassured that the HPV vaccines are safe and will provide protection for their children against a number of cancers for many many years.

    Remembering Professor Jane Wardle – Part 3 – Psychological and behavioural implications of the link between HPV and cancer

    By Alice Forster, on 10 January 2016

    This third post in our series on the contribution that Professor Jane Wardle made to cancer behavioural science discusses the human papillomavirus (HPV or cervical cancer) vaccine and HPV testing written by Dr Alice Forster and Dr Jo Waller.

    In 1976, Harald zur Hausen discovered that human papillomavirus (HPV) plays an essential causal role in the development of cervical cancer (he later won the Nobel prize in Physiology or Medicine in 2008 for this work). HPV can also cause cancers of the vagina, vulva, penis, anus and mouth and throat and is transmitted by skin to skin contact (usually sexual contact with cervical cancer). zur Hausen’s discovery made possible the development of technology to test for HPV, and this test is now used in the NHS cervical screening programme. Jane and colleagues realised that testing for a sexually transmitted infection in the cancer screening context might cause some women confusion and anxiety. They conducted work exploring the psychological impact of women testing positive for HPV, finding raised concerns about fidelity and blame and increased anxiety and distress. The work had implications for the kind of information women are given about HPV when they take part in screening.

    Another implication of zur Hausen’s discovery was the development in the late 1990s and early 2000s of vaccines that protect against the two types of HPV that cause most cervical cancers. Jane recognised, based on her work on HPV testing, that vaccinating young girls against HPV, a sexually transmitted infection, could be controversial for some and sought to understand the potential acceptability of HPV vaccines.

    One of Jane’s key studies in this area was conducted in 2005 before the HPV vaccine was licensed. The study aimed to explore mothers’ responses to information about the HPV vaccine. Jane and colleagues conducted a focus group study with 24 mothers of 8 to 14 year old daughters. The study found that most mothers were keen to prevent their daughters from developing cervical cancer, but they also had reservations about the safety and possible side-effects of the vaccine. Many mothers wanted to talk to their daughter about the vaccine and felt that this would be difficult if the vaccine was given to young children. Some felt that girls younger than 10 or 11 would not have had much, if any sex education and so discussing a sexually transmitted infection with them would be tricky. Others did not want to think about their daughter being sexually active and for this reason felt that they could not consider giving the vaccine to a 9 year old.

    “They’re innocent at 9. They don’t do things like that.”

     “It’s not thinkable is it, your 9-year-old doing anything like that?”

    Parents also expressed fear that HPV vaccination might be seen by girls as consent to be sexually active or fear that girls would misinterpret HPV vaccination as protection against sexually transmitted infections in general. Earlier work conducted by Jane and colleagues suggested that around a quarter of mothers and girls themselves believed that girls would be more likely to have sex or unprotected sex following HPV vaccination. However, reassuringly, in the first longitudinal study to look at whether girls’ sexual behaviour changed following HPV vaccination, we were able to show that vaccinated girls were no more likely to have become sexually active after vaccination (compared to girls who did not get the vaccine), to have increased their number of sexual partners or to have changed how consistently they used condoms.

    At the time of Jane’s initial research in this area, she and her team were one of only a handful of research groups internationally who were investigating the behavioural side of HPV vaccination and testing. Today, researchers across the world are applying behavioural science to understand how to maximise uptake of HPV vaccination in their own countries and to minimise the negative psychological consequences, and maximise the acceptability, of HPV testing. The work in our group continues, with projects aimed at understanding ethnic differences in uptake of HPV vaccination, exploring the psychological impact of primary HPV testing, and examining psychological responses to an HPV diagnosis in patients with head and neck cancer.

    Jane’s work paved the way for the introduction of the HPV vaccine in the UK in 2008, by helping immunisation programme coordinators anticipate its acceptability among parents. Jane’s finding that the HPV vaccine might not be acceptable to mothers if it were offered to girls younger than 11 informed the UK government’s decision to recommend the vaccine for 12 and 13 year olds. Today, almost 90% of 12 and 13 year old girls in England get the HPV vaccine, and with it protection against HPV-related cancers.

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    Why some girls don’t get the HPV vaccine and why others don’t get all doses

    By Alice Forster, on 6 January 2016

    Girls in year 8 in the UK (aged 12 and 13) are offered a vaccine that protects against human papillomavirus or HPV. While HPV is very common, in some people it can cause cancers of the cervix, mouth and throat, vulva, vagina, penis and anus. The vaccine protecting against HPV was originally given in three doses when the immunisation programme first started, however it is now given in two doses over at least six months. Most girls in England get the HPV vaccine (around 87% of them), but as we’ve written before, uptake of the vaccine is lower among girls from Black and Asian Minority Ethnic backgrounds. We also know that more girls get the first dose of the vaccine than complete the series. This is concerning as the vaccine works best if girls get all doses. However, we do not yet properly understand why some girls are not getting the vaccine and why some girls do not complete the series. With this information we can identify targets for information campaigns or wider policy changes that can help establish and maintain high coverage.

    In a study that was published at the end of last year, funded by Cancer Research UK, we spoke to girls who had been offered the HPV vaccine as part of the routine immunisation programme to find out why some girls had not got any doses of the HPV vaccine and why some had started, but not completed the series. The girls were recruited from 13 schools in London as part of a larger questionnaire study (some of the findings have been reported already here and here). Girls were asked if they had received the HPV vaccine and if they had, they were also asked how many doses they had received. We grouped girls as being unvaccinated (they had received no doses) or under-vaccinated (they had started the series, but had not finished it). They were then asked to explain why they were unvaccinated or under-vaccinated, and we categorised their responses using content analysis.

    There were 259 girls who were either unvaccinated (202 girls) or under-vaccinated (57 girls) who also gave us a reason to explain why this was the case. These girls came from a diverse range of ethnic backgrounds; around 31% were from White backgrounds, 29% from Black backgrounds and 20% from Asian backgrounds (around 20% were from an ethnic background other than White, Black or Asian, which were mainly mixed backgrounds, and 2% did not tell us their ethnicity).

    Reasons for being unvaccinated

    The most common reason that girls gave to explain why they had not had the HPV vaccine was that they did not have consent from their parents (41% of girls said this).

    “My mother didn’t want me to have it, even though I did” (Black Caribbean; self-reported ethnicity)

    Other common reasons included concerns about safety (reported by 25% of girls) and believing that they did not need the vaccine (19% said this).

    “My mum didn’t trust the vaccine because it was new” (Turkish).

    “Because I’m not going to have sex before marriage” (Pakistani)

    Reasons for being under-vaccinated

    Administrative problems were the most common reason that girls gave to explain why they had not finished the vaccine series (51% gave this as a reason), including being absent from school on the day of vaccination and some did not know that multiple doses were needed.

    “I never got round to having the 3rd one [dose] because I switched schools” (Indian).

    Health reasons, including girls believing that they had conditions which meant they should not complete the series (9%) and procedural issues, including fear of needles (5%), were also reported.

    “I hate needles” (Mixed White / Black Caribbean)

    “After the first vaccine I started to feel lighted headed” (Mixed White / Black Caribbean)

    Reasons given by girls from different ethnic backgrounds

    Compared to girls from other ethnic backgrounds, girls from White backgrounds were most likely to say that they were concerned about safety. Girls from Black and Asian backgrounds were most likely to say that they did not think that they needed the vaccine.

    Summary

    In this study we tried to find out the reasons why girls from a diverse range of ethnic backgrounds have not had the HPV vaccine or have not completed the series. Among girls who had not had the vaccine at all, concerns about the safety of the vaccine and believing that they did not need the vaccine were commonly reported. Girls who had not finished series said that they were absent from school when the vaccine was offered, did not know that multiple doses were needed and felt they had health issues that meant they should not have all doses. There was some suggestion that girls from White backgrounds were most commonly concerned about vaccine safety and that girls from Asian and Black backgrounds were most likely to believe that they did not need the vaccine. These findings can be used to tailor interventions to increase informed participation in the HPV vaccination programme among girls who are currently unvaccinated or do not complete the series. This will be the next step in one of our current programmes of work funded by Cancer Research UK.

    References

    Forster, A.S., Waller, J., Bowyer, H., Marlow, L. Girls’ explanations for being unvaccinated or under vaccinated against human papillomavirus: a content analysis of survey response. BMC Public Health. 2015;15:1278. doi 10.1186/s12889-015-2657-6

    The HPV Vaccination: What’s preventing girls from being vaccinated?

    By Lauren Rockliffe, on 18 March 2015

    The number of girls receiving the Human Papillomavirus (HPV) vaccination is at an all-time high, according to a new report published this month by Public Health England; In the six years since the vaccine became routinely available over 2.3 million girls have received it, and in the last three years over 86% of girls offered the vaccine have received it.

    Despite these figures, previous research has shown that girls from Black and Asian ethnic minority backgrounds are far less likely to receive the vaccination than their White British counterparts.

    To find out why this might be happening, the EMPATHIC study has been set up; EMPATHIC is an interview study which aims to investigate parents’ opinions and experiences of HPV vaccination. The intention is to work out from these interviews what additional information or resources parents need to help them make an informed decision about the vaccination.

    What is HPV and why is the vaccination important?

    HPV is a common virus that affects the skin and moist areas that line the body (e.g. the mouth, vagina, anus) and is spread by skin to skin contact, including sexual contact. Around 8 out of 10 people will be infected with HPV at some point in their life but in most people the virus goes away on its own and doesn’t cause any symptoms. However, for some people the virus can cause cell changes which can increase the risk of some cancers.

    There are over 100 different types of HPV. Around 13 types can cause cancer and two types in particular (type 16 & 18) have been shown to cause most cases of cervical cancer (around 70% of cases). HPV is spread to the cervix through sexual contact and most infections are symptomless, so it is not obvious if someone carries the virus. Girls in the UK are offered vaccination against HPV to protect against these two types that cause cervical cancer.

    Girls are offered the HPV vaccination when they are in year 8 at school. It is offered to girls at this age because the vaccine is most effective if it is given before girls become sexually active. If their parents provide consent for them to have the vaccination they will have two injections spaced six months apart. The vaccination could prevent over 70% of cervical cancers. It’s therefore important for all girls to have the opportunity to get the vaccination.

    What does the EMPATHIC study involve?

    We are planning to conduct individual interviews with the parents of girls (who are in years 9 to 11 at school) from various backgrounds whose daughters have and haven’t had the HPV vaccine.

    We are working with schools and community groups in London who are helping us to contact parents that might want to be involved. We are also happy to for parents to get in touch with us if they think they might be right for the study.

    The interviews will last around 30 to 60 minutes. Parents will be asked to discuss their thoughts about the HPV vaccination and past experience of vaccination.

    What will happen after the interviews?

    After we’ve done all of the interviews (we’re aiming for 30 to 60) we will analyse the information and interpret the findings, which will hopefully result in some suggestions about what information or resources are needed to help parents make an informed decision about their daughter having the HPV vaccination.

    The next step will be to design some type of intervention based on what we find. This could be an information leaflet, text message reminders, or meetings held at the school, we don’t know yet; our decision will be based on our findings. Whatever intervention we develop will be tried out and we will evaluate how useful it is, to see whether it is something that could be used on a wider scale to help more parents make decisions about the vaccination.

    Get in touch!

    We’d like to hear your thoughts on the study. If you have any comments or are just interested in learning more, please contact Dr Alice Forster on 0203 108 3293 or at alice.forster@ucl.ac.uk.

    Article Reference: Public Health England (2015) Human Papillomavirus (HPV) Vaccine Coverage in England 2008/09 to 2013/14 (Report no. 2014797). London: Public Health England.