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Prevalence of beliefs about actual and mythical causes of cancer

By Jo Waller, on 26 April 2018

Lion Shahab, Jennifer A. McGowan, Jo Waller, Samuel G. Smith

Approximately one third to one half of cancer diagnoses are preventable by changes to lifestyle behaviours. In Europe, at least 1.1 million cancer cases per year could be prevented if people had healthier lifestyles. According to the latest (4th) European Code Against Cancer (ECAC), established cancer risk factors include active and passive smoking, alcohol consumption, being overweight or obese, being physically inactive, have a poor diet, being exposed to ultraviolet radiation (e.g. from the sun), and infection with human papillomavirus (HPV). However, many other unverified (‘mythical’) causes of cancer appear in tabloids and on social media. Recognising the difference between the real and the ‘mythical’ cancer causes can be difficult. Conflicting messages can make it harder for people who are trying to reduce their cancer risk to place their efforts into effective activities.

In a study published in the European Journal of Cancer, we report findings from the 2016 Attitudes and Beliefs About Cancer-UK Survey of 1,330 UK participants. The survey explored the public’s beliefs about actual cancer causes (smoking, alcohol consumption, low physical activity, low fruit and vegetable consumption, being overweight) and mythical causes of cancer. Awareness of actual causes of cancer was low, with participants on average on being able to identify half of the causes of cancer. More than a third (40%) of adults did not know that being overweight was associated with an increased cancer risk and the same number did not recognise sunburn as a cancer risk. Almost three in four adults (71%) did not know that HPV is associated with cancer. Being able to identify correct causes of cancer was related to the likelihood of participants not smoking, and eating five or more fruit and vegetables a day.

Participants could, on average, only identify 36% of mythical causes of cancer as incorrect. Of these, adults were most likely to believe that stress (43%), food additives (42%) and electromagnetic frequencies (35%) caused cancer. A quarter (26%) of participants believed that mobile phones could cause cancer. Interestingly, adults who endorsed the actual causes of cancer were also more likely to also believe in the mythical causes, suggesting a great level of confusion between the two.

If people are to make informed decisions about their lifestyle they need an accurate understanding of cancer risk factors. Our survey shows that there is a large degree of confusion among the general public regarding those risks. It seems that the numbers of people who believe in the unfounded causes of cancer has increased over the last decade. This could be linked to the way people now access information and the rise of so-called “fake news”. Looking for information from reputable websites like NHS Choices and Cancer Research UK is a good way to avoid this. Cancer Research UK even has a page presenting evidence to debunk some the myths, which could be a useful resource for people who are understandably confused.

When women are too busy for cervical screening or have had a bad experience, could HPV self-sampling be an appealing alternative?

By Laura Marlow, on 17 April 2018

By Kirsty Bennett and Laura Marlow

In the UK, women aged 25 to 64 are regularly invited for cervical screening (the ‘smear test’ or ‘Pap test’). While uptake of cervical screening is generally high, it has been declining in recent years, and in 2017 just over a quarter of women did not attend screening. Studies exploring screening non-attendance suggest a wide range of reasons that women do not go, including practical barriers such as difficulties arranging appointments, emotional barriers including embarrassment and fear of what the test might find and low perceived risk of cervical cancer.

One of our previous blogs described how most non-participants at screening are aware of screening and have made a decision about future attendance. The majority of these intend to go despite currently being overdue or unscreened, but some have made an active decision not to attend for screening in future. In our latest study, funded by Cancer Research UK as part of a larger project on cervical screening, we explored barriers to cervical screening among 426 women who had made an active decision not to attend in the future, and compared them with 117 women who intended to be screened in the future.

Participants were shown sixteen possible barriers which covered a variety of reasons why some women might not attend screening, and they were asked to choose the ones that applied to them. Women who had made an active decision not to be screened were more likely than the ‘intenders’ to say that screening wasn’t relevant to them because of their sexual behaviour (reported by 27%).  Cervical cancer is caused by a sexually transmitted infection (HPV, or human papillomavirus – see below), so some women had decided not to go for screening because they were no longer sexually active, or had been in the same relationship for a long time.  They also reported having more important things to worry about than screening (reported by 12%) and some said they had weighed up the risks and benefits and decided it was not worth getting screened (reported by 13%).

We went on to ask women about their interest in HPV self-sampling. HPV is a very common sexually transmitted infection and nearly all cases of cervical cancer are caused by this virus. It can take many years for an HPV infection to develop into cervical cancer so a woman’s current sexual behaviour does not necessarily reflect her current risk. Although it’s not offered by the NHS Cervical Screening Programme at the moment, HPV self-sampling allows women to collect a sample themselves, usually by using a vaginal swab. The sample is then sent to a laboratory and tested for HPV. Many of the women who had decided not to attend cervical screening (66%) indicated that they would be interested in self-sampling. Self-sampling seemed to be particularly appealing to women who reported a bad experience of screening in the past, and those who were too busy or embarrassed to attend. Shifting the perceived cost-benefit ratio for these women by offering HPV self-sampling might increase screening participation in this group. Studies in several countries have found that offering self-sampling to women who don’t attend for screening can be a very effective way of increasing participation.  With the shift to HPV primary screening planned for 2019 in England, self-sampling may become a feasible option for some women.

Reference:

Kirsty F Bennett KF, Waller J, Chorley AJ, Ferrer RA, Haddrell JB, Marlow LAV. Barriers to cervical screening and interest in self-sampling among women who actively decline screening. Journal of Medical Screening. Published online.

Unpicking the differences between types of cervical screening non-attenders

By Laura Marlow, on 21 March 2018

Every year around 28% of women who are eligible for cervical screening do not attend as recommended. Last year we blogged about a paper we had published exploring how these women can be divided into five broad sub-types; 1) unaware of screening, 2) unengaged with screening, 3) undecided about whether to go for screening, 4) decided not to go for screening and 5) decided to go but not yet gone. We also found some patterns in the way these different non-attender types are distributed across different groups of the population. For example, we found that women from ethnic minority groups were more likely to be unaware of screening and older women were more likely to have decided not to go. Understanding these patterns will help us to decide how interventions might be shaped differently for different types of non-attenders. For example, since women from ethnic minority groups are more likely to be unaware of cancer screening, targeted public health campaigns aimed at raising awareness within ethnic minority communities could be beneficial.

More recently, we have been delving a bit deeper and have tried to unpick some of the psychological and behavioural differences between the most common non-attender groups. Published in the journal Preventive Medicine this week, our new work shows some interesting findings. Most notably we showed that women who are unaware of screening tend to be more fatalistic, both about life in general and about cancer. They also have more negative beliefs about cancer outcomes. Women who had decided not to be screened frequently perceived themselves to be at lower risk of cervical cancer. And for women who were unengaged with screening, both more fatalistic beliefs and lower perceived risk were relevant. Health behaviours also varied between the different groups, with unaware women less likely to have seen a GP recently, and unengaged women less likely to seek out health information and more likely to actively avoid cancer information in the media.

This work will help us to identify the content of the messages that we might use for specific types of non-attenders. Interventions to raise awareness of screening should include messages that address fatalistic and negative beliefs about cancer. By contrast, information for women who have decided not to be screened may need to ensure they have an accurate knowledge of their risk of cervical cancer and that they understand the benefits of screening. This will help make sure women who decide not to take part are making an informed choice. Our next step it to outline what these interventions might look like – watch this space!

Cervical screening without a speculum: a future option for older women?

By Laura Marlow, on 19 February 2018

In the UK, women are invited for cervical screening (the ‘smear test’) between the ages of 25 and 64, and although uptake is high it has been falling for some years across all age groups (1). A number of studies have focused on improving uptake among younger women (2), but a recent BMJ article called for work to focus on the needs of ‘older’ women too, given that half of all cervical cancer deaths are in women over 50 (3). One particular issue for older women can be that screening becomes more painful following the menopause. Lower oestrogen levels can cause thinning and dryness of the vaginal walls and it’s estimated that half of all post-menopausal women have these symptoms. This can mean that inserting the speculum (the instrument used to open the vagina for examination) is particularly painful for some ‘older’ women. Dr Anita Lim at King’s College London has been awarded funding by Cancer Research UK to explore a different procedure for collecting samples without a speculum. Samples collected without the speculum would be tested for human papillomavirus (HPV) and women would only need to have further examination if they were found to be HPV positive.

Collaborating with Dr Lim, we led some exploratory work to assess the acceptability of this potential alternative (4). Published online last week in the Journal of Medical Screening, the work included focus groups and interviews with 38 women aged 50-64 who had a variety of cervical screening histories (‘up to date’, ‘overdue’ and ‘never been screened’). As expected, many of the women reported negative experiences of the speculum during cervical screening and found its insertion was sometimes painful, particularly after the menopause. Women were generally positive about the idea of screening without a speculum and thought it would be less invasive than the current procedure. However, some women were concerned that this method could be less accurate, because the swab might touch other areas and collect unwanted cells, and the sample-taker would not be able to clearly see the cervix without a speculum. Women said they would want sufficient information and reassurance, particularly about the effectiveness of non-speculum sampling compared to current cervical screening.

The findings from this study suggest that HPV testing on clinician-collected samples taken without a speculum could be an acceptable alternative to conventional cervical screening. It might be particularly useful for older women who have had difficulty with the speculum examination, potentially due to post-menopausal changes. Dr Lim will continue to explore the acceptability of introducing clinician-collected non-speculum sampling alongside assessing how well the test works, but preliminary work suggests introducing this procedure could improve screening uptake among 50-64 year-olds who have put off attending.

  1. Screening and Immunisations team. Cervical screening programme: England, 2016-17. Health and Social Care Information Centre, 2017, p. 1 – 76.
  2. Kitchener HC et al. A cluster randomised trial of strategies to increase cervical screening uptake at first invitation (STRATEGIC). Health Technol Assess 2016, 20(68):1-138.
  3. Sherman SM et al. Cervical cancer is not just a young woman’s disease. BMJ 2015, 350:h2729.
  4. Freeman et al. Acceptability of non-speculum clinician sampling for cervical screening in older women: A qualitative study. JMS, in press.

Can technology help cancer survivors increase physical activity?

By Moritz P Herle, on 8 August 2017

by Anna Roberts

Over 14 million people are diagnosed with cancer worldwide each year, and this is expected to rise to 22 million over the next two decades. Thankfully, due to improvements in early diagnosis and treatment, the number of people who are surviving longer after cancer is also increasing.

However, many people diagnosed with cancer experience long-lasting and debilitating side effects (e.g. fatigue, pain, sleep difficulties, anxiety and depression), all of which can substantially reduce quality of life. Health behaviours, such as physical activity and diet could prolong survival, reduce the risk of cancer returning and have been shown to reduce many of these common side effects. However, it is many of these side effects which make physical activity more difficult to do following a cancer diagnosis, and the number of cancer survivors who meet the recommended 150 minutes of moderate-vigorous physical activity per week is lower than for people who have never had cancer.  Therefore, there is a need for interventions which can help support cancer survivors’ to take part in physical activity following their diagnosis.

Digital interventions use technologies such as text messaging, email, mobile apps, social media, websites and patient portals can be used to support health behaviours such as physical activity and diet. Digital interventions have increased in popularity as they are easy to access, tend to cost less than face-to-face support and therefore have the ability to reach a large number of people. This is especially true given the ever increasing number of UK adults who access the internet and own a smartphone.

In the last few years, the number of studies which have looked at how effective these types of technologies are at improving cancer survivors’ physical activity participation and diet quality has rapidly increased. In our new study, we reviewed all of the published literature to see how effective digital technologies are at increasing physical activity or improving dietary quality among people diagnosed with cancer. We also looked at the effect of these types of interventions on body mass index (BMI) and other cancer-relevant outcomes measured in the studies, such as fatigue, sleep quality, anxiety and depression and quality of life.

15 studies were included in the review, all of which evaluated the effect of a digital technology on physical activity and five studies also evaluated the effect on dietary quality. By statistically combining the data from the studies (also known as a meta-analysis), we were able to estimate that digital technologies can increase cancer survivors’ moderate-vigorous physical activity by approximately 40 minutes per week. This technique also allowed us to show that digital technologies can significantly reduce BMI, however there was no evidence of an improvement in cancer survivors’ quality of life. While there was evidence for a reduction in fatigue, this was not large enough to be deemed statistically significant. Meta-analysis was not possible for all of the outcomes we were interested in (either due to the variation between studies in the way in which they were measured or because of the small number of studies which assessed these outcomes). Of the 5 studies which assessed the effect of digital interventions on diet, only 2 showed an improvement in dietary quality. There was no evidence of any improvement in anxiety or depression and while only 2 studies evaluated the effect on sleep quality, both showed a significant improvement in sleep outcomes.

However, as this is an emerging field of research, the quality of the included studies was varied. For instance, all of the studies asked participants to report their own physical activity participation using questionnaires. These types of questionnaires are notorious for overestimating actual physical activity levels. Furthermore, the length of follow-up in these studies was relatively short which makes it difficult to understand the longer-term impact of these types of interventions. There was also large variation between the studies in terms of the types of digital interventions, the types of cancer and the way in which the outcomes were measured. This makes it very difficult to ascertain what types of intervention are most effective, for which outcomes, among which groups of cancer survivors. While the results of this review show that the use of digital technologies in this context appears promising, we also call for larger, high-quality studies with objective measures of physical activity and longer follow-up periods.

Article link: Roberts AL, Fisher A, Smith L, Heinrich M, Potts HWW. Digital health behaviour change interventions targeting physical activity and diet in cancer survivors: a systematic review and meta-analysis. Journal of Cancer Survivorship, 2017.

I’ve never heard of it; I don’t want to; it’s on my list

By Laura Marlow, on 3 July 2017

Authors: Amanda Chorley, Laura Marlow, Jo Waller

One of our previous blogs discussed how rates of cervical screening (aka the smear test, or pap test) have been declining in the UK. Last year, screening uptake rates fell to 72.7%, meaning that over a quarter of women had not been screened as recommended (1). A better understanding of why women are not being screened is vital. If women are making informed decisions not to attend this is perfectly acceptable, but if women do not understand cervical screening or find it difficult to attend for other reasons (e.g. inconvenient appointment times), interventions to address this are important. Treating women who do not attend screening as a single group of “non-participants” means those with very different screening experiences and intentions are considered to be the same. Unsurprisingly this means that “one size fits all” interventions to increase screening participation do not have large effects, as they are unlikely to be suited to individual women’s differing needs.

In our latest study published in the European Journal of Cancer last week, we used the Precaution Adoption Process Model (PAPM)(2) to try and improve our understanding of the ways in which women who do not attend screening may differ. The PAPM is a model from behavioural science which states that before carrying out a health behaviour (in this case cervical screening), a person must move through a number of stages. A person must first be aware of the health behaviour and engaged with it before they can make a decision whether or not to carry it out. If they do decide to carry out the behaviour, they must then overcome any barriers which may be in the way of this (e.g. getting to the screening appointment). Importantly, the PAPM also includes the possibility for people to make an active decision to not participate in the behaviour. By classifying women according to the PAPM we hoped to identify what the most common type of screening non-participant is, and whether women within a particular group tend to have shared characteristics.

793 (27%) of the 3113 women we surveyed were either overdue for screening (including those who had never had a smear test) or said they did not plan to go for screening when next invited. Of these non-participating women, just over half said that they do intend to go. These women tended to be younger than women who were up to date with screening, and were more likely to be single and from less affluent backgrounds. Perhaps more surprisingly, given the fact that all should have received an invitation and leaflet about screening as part of the NHS programme, 28% of non-participating women said that they had never heard of cervical screening, smear or pap tests, even after being shown a photo of the procedure. These women were more likely to be younger and from ethnic minority and less affluent backgrounds, and to have English as a second language. Finally, 15% of non-participating women said that they had made a decision not to be screened in the future. These women tended to be older, and most had been screened before. As with the other two groups, they were also more likely to be from less affluent backgrounds.

The differences between these groups of non-participants show how important it is to consider the different reasons for non-participation. Changes such as more flexible clinic hours or text message reminders may help women who do want to go for screening but have found it hard to get around to it. However, for women who are unaware of cervical screening, more accessible information about the programme is a vital first step towards making an informed choice about whether to participate or not. As we found that unaware women were more likely to be from ethnic minority backgrounds and less likely to speak English as their first language, it may be helpful to provide information in more languages and through TV or radio advertisements rather than just using written materials. Choosing not to be screened is a legitimate choice, and one that needs to be respected by medical professionals. However, in order for women to make an informed choice it is important that they have access to relevant information, including the benefits, risks, and limitations of screening. For some of the women who have decided not to go in the future, it may be the case that they have sought out this information. For other women the decision not to go for further screening may be due to a previous bad experience.

Our survey goes some way to showing that there is not just one type of cervical screening non-participant, but different groups of women with different experiences, choices, and needs. In the future we hope to look further into these differences, both between and within the different groups described in this post.

1. Screening and Immunisations team ND. Cervical screening programme: England, 2015-16. Health and Social Care Information Centre, 2016, p. 1 – 76.
2. Weinstein N. The Precaution Adoption Process. Health Psychology. 1988; 7: 31.

Early detection or prevention?: What is the main aim of different cancer screening programmes?

By Moritz P Herle, on 23 May 2017

by Amanda Chorley and Jo Waller

Cancer screening programmes, such as breast, cervical, and bowel, are an important tool in the fight against cancer. Many people are aware of the value of early detection of cancer, which breast screening and the Faecal Occult Blood test (FOBt) part of bowel screening offer, which allows for treatment at an earlier stage when it is more likely to be effective. But are people aware that cervical screening and bowel scope screening (also known as flexible sigmoidoscopy, or FS) primarily aim to prevent cancer by identifying and removing abnormalities which may progress into cancer at a later date? This is the question we looked to answer in our recently published paper1 in the Journal of Medical Screening.

As part of a larger survey on attitudes and behaviours surrounding cancer, we asked 1433 middle aged and older adults what they thought the main purpose of each of these screening programmes was. We found that while the majority of respondents were aware that breast screening (77.9%) and FOBt (73.2%) aimed to detect cancer early, only 17.6% knew that cervical screening primarily aimed to prevent cancer. For bowel scope screening the figure was only 13.8%. Overall only 13 people correctly identified the purpose of all four screening programmes, which is just under 1% of respondents.

We also looked at whether people had participated in each programme in the past to see whether that had any effect on awareness of the purpose of the programme. People who had been sent a test kit, and those who had completed and returned the kit were more likely to know that FOBt is designed to detect cancer early. For breast screening, only those having participated in screening were more likely to know that it was aimed at early detection. Having received an invitation did not seem to have an effect on knowledge of the purpose of the test.

However for both cervical screening and bowel scope screening neither those who had received an invitation nor those who had actually participated in the programme were any more likely to be aware of the preventive nature of the programme than respondents who hadn’t been invited or participated. This is despite the leaflets accompanying invitations clearly stating prevention as the main purpose.

On the one hand it is positive that public health messages on the importance of the early detection of cancer have been so effective, and that the majority of people recognise this to be the purpose of breast screening and FOBt. However, for people to make an informed choice about whether to participate in a screening programme they need an understanding about what the screening test aims to do, as well as any risks and benefits. Our survey suggests that this is not the case for cervical screening and bowel scope. As well as this lack of awareness being an issue for informed choice, it could also have consequences for how people engage with the screening programmes. People may end up avoiding screening tests if they are afraid they might be told they have cancer2, 3. Knowing that some programmes can prevent cancer by finding and removing abnormalities may help to reduce these fears. Other studies have shown that women invited to colposcopy after having an abnormal result from their smear test sometimes mistakenly believe they have cancer4, 5. A better awareness that cervical screening mainly looks for cell abnormalities which can be removed before they have a chance to turn into cancer may help in reducing stress and worry about the abnormal result.

If leaflets aren’t getting these messages across effectively, one of the priorities for the future will be finding different ways to communicate about cancer screening so that everyone understands what the tests are trying to do.

 

  1. Chorley AJ, Hirst Y, Vrinten C, Wagner Cv, Wardle J and Waller J. Public understanding of the purpose of cancer screening: A population-based survey. J Med Screen. 2017; 0: 0969141317699440.
  2. Vrinten C, Waller J, von Wagner C and Wardle J. Cancer fear: facilitator and deterrent to participation in colorectal cancer screening. Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology. 2015; 24: 400-5.
  3. Andersen MR, Smith R, Meischke H, Bowen D and Urban N. Breast cancer worry and mammography use by women with and without a family history in a population-based sample. Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology. 2003; 12: 314-20.
  4. Kavanagh AM and Broom DH. Women’s understanding of abnormal cervical smear test results: a qualitative interview study. BMJ (Clinical research ed). 1997; 314: 1388.
  5. Gray NM, Sharp L, Cotton SC, et al. Psychological effects of a low-grade abnormal cervical smear test result: anxiety and associated factors. British journal of cancer. 2006; 94: 1253-62.

 

Congratulations to Dr Jo Waller

By rmjdafo, on 7 November 2016

Alice Forster and Laura Marlow

Today at the NCRI Cancer Conference in Liverpool, the inaugural Jane Wardle prize was awarded to our very own Dr Jo Waller to recognise her world-leading contribution in cervical cancer prevention. The prize was set up by Cancer Research UK in memory of Professor Jane Wardle who died last year. Jo has been at the Health Behaviour Research Centre for 15 years and was herself mentored by Jane Wardle. In this blog we highlight some of Jo’s key research in cervical cancer prevention during this time.

 

In 2005, Jo completed a PhD exploring psychosocial issues surrounding the viral aetiology of cervical cancer. These early studies explored the emotional and social consequences of a HPV diagnosis and how women make sense of a HPV positive result at cervical screening. The findings highlighted extremely low awareness of HPV and poor understanding about how cervical cancer develops. This work also showed the importance of providing good information to ensure minimal anxiety when receiving a HPV positive result at screening and to avoid stigmatising cervical cancer.

 

Jo and her colleagues went on to explore psychosocial issues surrounding HPV vaccination before and after its introduction in 2008. This research helped identify the most appropriate age for the vaccine and contributed to the content of the information materials provided. In addition, this work offered reassurance that vaccination against a sexually transmitted infection (the HPV vaccine) did not result in changes to girls’ sexual behaviour as some media reports had suggested. Jo’s work has also explored why certain sub-groups of the population, such as young women and ethnic minority women are less likely to participate in cervical screening.

 

In 2014, Jo was awarded a prestigious Cancer Research UK Career Development Fellowship to continue her research in cervical cancer prevention. Jo now formally manages a team of researchers and her current research activities include understanding non-participation in cervical cancer screening and HPV vaccination, developing interventions to improve uptake of these cervical cancer control interventions, and evaluating the psychological impact of primary HPV testing within cervical screening.

 

Jo has also been involved in numerous other bodies of work over the last 10 years including development of the Cancer Awareness Measure and studies exploring informed choice about screening. She is also an informal mentor to many students and colleagues. We are all very proud of Jo’s achievement today. Well done Jo!

 

You can read more about our current work in cervical cancer prevention on our website.

Fifty shades of cancer fear

By Charlotte Vrinten, on 7 October 2016

Are you afraid of cancer? Don’t worry, you’re in good company. Surveys show that many people in the UK are afraid of cancer [1]: 35% of people fear cancer more than other serious illnesses such as heart disease or HIV [2], and 20% fear cancer more than being in debt, being in a car accident, or losing a job. [3] But although we know that lots of people find cancer frightening, we don’t really know what it is about cancer that they are afraid of. So in our latest study, we aimed to explore just that.

You may wonder why it is important to pinpoint what it is about cancer that worries people. The answer is that the nature of the fear may determine how people behave when it comes to cancer screening or responding to suspicious symptoms. For example, a study in the US found that worry about prostate cancer motivated men to have a prostate examination, while fear of the examination put them off. Intuitively, we know that there are many different aspects to cancer that could be frightening, but until now, no one had really explored this.

In our study, which was published today, we collated findings from 102 interview studies from 26 countries to see what people in the general population(as opposed to cancer patients) said they feared about cancer [5]. All the studies combined included more than 3,500 participants.

We found that those who are afraid of cancer seemed to view cancer as an indestructible enemy that randomly sneaks up on people to kill them – reprising the media’s ‘war on cancer’ theme. This rogue super soldier inspired lots of fear, which could be increased or decreased by factors such as family history of cancer, symptoms, or experiences of cancer in others, as well as coping styles such as ‘checking up on the enemy’ through cancer screening, or pretending that it doesn’t exist.

In addition, we found that there are also specific aspects of cancer that inspire fear. Many participants were fearful of the emotional upset that a cancer diagnosis would cause. Fears of cancer treatment, such as chemotherapy and surgery, were also mentioned in many studies, in addition to the fear that surgery might cause cancer to spread (a fear that is completely unfounded). Some women expressed fears about losing intimate body parts and thereby their gender identity, for example if a breast needed to be removed to treat breast cancer.

The social implications of being a cancer patient also inspired a lot of fear. Some people feared that a cancer diagnosis would stigmatise them, or would attract blame. Many people also worried that a cancer diagnosis would have a negative effect on their family, by burdening them financially, physically, or psychologically. Some women were worried that losing a breast would mean that their partners would no longer find them attractive and might abandon them.

Finally, we found many references to fears about dying from cancer. Some said that they were so afraid of dying from cancer that they’d rather die without knowing that they had it.

What can we conclude from these findings? We have shown for the first time that there are many different things that people in the general population – without a cancer diagnosis – worry about when it comes to cancer. What we do not yet know is how common these worries are, and how they may influence willingness to take steps to reduce cancer risk or get it detected early. These are questions that we will be investigating further. For example, we recently completed a national survey to find out how common various cancer worries are, the results of which will be presented at the upcoming NCRI conference. Watch this space!

References

[1] Vrinten C, van Jaarsveld CHM, Waller J, von Wagner C, Wardle J. (2014). The structure and demographic correlates of cancer fear. BMC Cancer, 14(1), 597.

[2] http://www.cancerresearchuk.org/about-us/cancer-news/press-release/2011-08-15-people-fear-cancer-more-than-other-serious-illness

[3] http://www.cancerresearchuk.org/about-us/cancer-news/press-release/2010-12-08-cancer-is-biggest-fear-but-34-per-cent-put-it-down-to-fate

[4] Consedine NS, Adjei BA, Ramirez PM, McKiernan JM. (2008). An object lesson: source determines the relations that trait anxiety, prostate cancer worry, and screening fear hold with prostate screening frequency. Cancer Epidemiology Biomarkers & Prevention, 17(7), 1631-1639.

[5] Vrinten C, McGregor LM, Heinrich M, von Wagner C, Waller J, Wardle J, Black GB. (2016). What do people fear about cancer? A systematic review and meta-synthesis of cancer fears in the general population.  Psychooncology, Epub 6 Oct 2016.

The importance of vaccination for everyone

By rmjdafo, on 19 August 2016

It’s important that most people get vaccines

Most people get the vaccines offered to them as part of the NHS immunisation programme. They help prevent, and reduce the spread of diseases. Because of vaccines we no longer have smallpox anywhere in the world and polio is almost wiped out too.

For some vaccines, fewer people from some ethnic minority backgrounds get them compared to everyone else in the UK. For example, children from Nigerian, White Polish or Somali backgrounds are less likely than other groups to be vaccinated against Diphtheria in London (1). For other vaccines, more people from some ethnic minority backgrounds get them compared to everyone else. For example, one study found that children from Black and Asian backgrounds living in the London borough of Brent had higher uptake of the first dose of the MMR vaccine than children from White backgrounds (2).

Because of the way vaccination works, it’s really important that most people get the vaccines they are offered. If enough people get vaccines, protection is given to the people who cannot get them for medical reasons or are too young. So although the vast majority of people get vaccines, it’s still useful to understand why some people do not, so we can work out how we might be able to increase the number of people who get them. Because of the differences in who is and is not getting vaccines, we decided to explore what it was that might make children from ethnic minority backgrounds more or less likely to get vaccines.

What did we do?

In our new review, we looked at published studies where parents from ethnic minority backgrounds have been spoken to about why they had or had not chosen to vaccinate their children. We just looked a studies that had used qualitative methods, like interviewing parents and speaking to small groups of parents all at once (called focus groups). We used a technique called Thematic Synthesis to bring all of the findings together, which involves a number of researchers labelling the things that people had said and finding common themes within these labels.

What did we find?

Not surprisingly we found that most of the things that had convinced parents from ethnic minority backgrounds to get vaccines for their children, or had stopped them from doing so, were the same as the things that parents in general tell us. For example, parents had said that they were happy to go along with the doctor’s recommendation; that their decision had been influenced by other people and had found that things like transport problems had stopped them getting vaccines.

But there were also some things that had affected parents’ decisions about vaccines that were linked to ethnicity. For some parents, their religion instructed them about whether vaccines were needed for their children. Other parents were influenced by their experiences of having lived in other countries. For some, this made them appreciate the healthcare that is offered in the UK, but others felt that particular vaccines were not needed because they were not offered to them back home. Scare stories in newspapers or on the television can sometimes cause parents to worry about vaccines. We found that some parents who did not speak English had not heard these stories and so did not have the worries that other parents might. Some parents had wanted information about vaccines to be given to them in the language they speak at home. Finally, vaccines go through many years of testing and are studied in groups of people from all different ethnic backgrounds. Some parents said that they wanted to know about this testing, so that they could be reassured that their children would react to the vaccines in the same way as other children.

We now have a better understanding of why some people do and do not get vaccines

This research has helped us to understand why children from some ethnic minority backgrounds might be more likely to get some vaccines. It also told us the type of information that parents from ethnic minority backgrounds want to know about vaccines to be confident that giving their child a vaccine is the right thing. In some situations it might be a good idea to tailor information about vaccines to parents from particular ethnic minority backgrounds to make sure they are getting all the information they want to have.

 

References

  1. Wagner KS, van Wijgerden JCJ, Andrews N, Goulden K, White JM: Childhood vaccination coverage by ethnicity within London between 2006/2007 and 2010/2011. Arch Dis Child 2014, 99(4):348-353. DOI: 10.1136/archdischild-2013-304388
  2. Mixer RE, Jamrozik K, Newsom D: Ethnicity as a correlate of the uptake of the first dose of mumps, measles and rubella vaccine. J Epidemiol Community Health 2007, 61(9):797-801. DOI: 10.1136/jech.2005.045633