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Putting screening non-attendance under the microscope – understanding why some women don’t go for smear tests

By Jo Waller, on 26 April 2016

Authors: Amanda Chorley and Jo Waller

If you are a woman aged 25 or over, there is a good chance you have attended cervical screening (the smear or Pap test) at least once. In England last year, just under three quarters of women were ‘up to date’ with cervical screening [1], meaning that over a quarter of women are not up to date. As cervical screening, in addition to HPV vaccination, is one of the best ways to protect yourself from cervical cancer it is important to understand why some women do not attend.

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Many studies have asked women about their feelings towards and experiences of cervical screening. We carried out a review of studies [2] from the UK, Australia, Sweden and South Korea – countries where women are automatically invited for screening on a regular basis.

By pulling together findings from across 39 studies, we identified two main themes. Firstly women considered whether they should go for screening – were they at risk of cervical cancer? How serious was the outcome? And is screening a useful way of dealing with that threat? Secondly, women who had previously been for screening recounted their experiences, and how this made them feel about going again.

Should I go for screening?
In deciding whether they should go for cervical screening or not, women considered whether they were at risk of cervical cancer, and therefore if screening was relevant to them. Their decisions were often based on ideas of the causes of cervical cancer, such as number of sexual partners. Women also considered their current life stage (both biological such as menopause, and social such as being the mother of young children), and their family history of cervical (and other) cancer.

Women differed in whether they thought cervical screening was worthwhile. Some talked about the benefits of early detection of cancer (e.g. better survival or ‘peace of mind’). Others believed that they would know if they had an illness as serious as cancer, without screening, or were cynical about the motives of screening programmes. The final group were aware of screening, but were unsure of its importance. These women were often from more deprived backgrounds, or were from ethnic minority groups.

Screening is a big deal
It was clear from women’s accounts that one bad experience of screening could make them avoid screening in the future. However it is important to remember that it is possible that women who have had bad experiences are perhaps more likely to take part in studies about screening than women who do not view screening as a big deal.

Some women found the prospect of screening threatening, either through the risk of being given a diagnosis of cervical cancer, the belief that you might get an infection from unclean instruments, or through the anxiety screening and the wait for results could cause. Some women reported a different kind of threat. It was believed that a positive result could mark you as “promiscuous”, and for some women (especially those from ethnic minority groups) simply attending screening could suggest to other people that you were sexually active.

Cervical screening was also seen as a big deal because of physical aspects, such as pain, or disliking the speculum. For others emotional aspects were more important. In particular, some women reported feelings of embarrassment, shame, and a loss of control during screening, due to the unusual situation in which you are expected to expose your genitals to a relative stranger.

Because of this, women across studies had a strong preference for female nurse or doctor for cervical screening.

Other factors
These are not the only reasons women do not attend screening. Some women talked about how they would like to go for screening, but competing priorities, such as childcare and work, or inconvenient appointment times or clinic locations meant that they could not easily attend. Women from ethnic minority groups also reported specific problems, such as racist treatment from health professionals, and difficulty in accessing information about screening due to a lack of translated material.

What does this mean?
Our findings show that women are not all alike in their reasons for not attending screening. Some do not think screening is relevant for them and have made a conscious decision not to go. Others have had a bad experience and wish to avoid that happening again. Yet other women would like to attend screening, but life gets in the way. And of course cervical screening is not a one-off event. Women will continue to be invited over a period of decades, and factors that were important at one stage of a woman’s life may be more or less important in the future.

Knowing this allows us to develop different kinds of information and support for women depending on which factors are most important to them. We are now also able to carry out further research to try and find out whether certain factors are more likely to be considered important by certain groups of women. Our review also made it clear that the opinions of women who have never attended, or even heard of screening, have hardly been explored. We hope to interview women from these groups in the coming months, and find out more about their barriers to cervical screening.

[1] Screening and Immunisations team HaSCIC. Cervical Screening Programme, England. Statistics for 2014-15. 2015.

[2] Chorley AJ, Marlow LAV, Forster AS, Haddrell JB, Waller J. Experiences of cervical screening and barriers to participation in the context of an organised programme: a systematic review and thematic synthesis. Psycho-Oncol. 2016.

2 Responses to “Putting screening non-attendance under the microscope – understanding why some women don’t go for smear tests”

  • 1
    EEB (Aust) wrote on 28 October 2016:

    It’s accepted and respected that some men will choose not to have cancer screening. The law and proper ethical standards tell us all screening is elective for men AND for women and requires our informed consent.
    Yet women are viewed very differently, we’re expected to do as we’re told, IMO, we get one-sided and incomplete information, screening is always presented as a “must” or “should” and women are even scolded, judged and insulted if they choose not to have this “elective” screening test. We’re counted off like ignorant sheep.

    GPs even receive target payments for cervical screening and many doctors still link the test with the consult for the Pill, the test has nothing to do with the Pill so it’s arguably testing with no consent.
    I don’t screen, and I certainly don’t need to explain my reasons to anyone, it’s entirely my business. It’s outrageous that women are still treated like public property, mere bodies to be counted off or captured to achieve a target. Some of the language and tactics used by these programs is disgraceful. I consider it medical abuse.
    It says to me more needs to be done to address these unacceptable attitudes in the medical profession and elsewhere.
    We have so many studies on why some women choose not to have this “elective” test – what don’t they understand about the word, ELECTIVE?
    It seems to be a refusal to accept the elective nature of screening tests when it comes to women. It’s painted as mandatory and women are reckless and irresponsible if they don’t follow recommendations. It’s readily accepted and respected that some men will choose not to have cancer screening.
    I think we need studies on the risks of screening – how many women face excess biopsies or over-treatment after a false positive pap test? No money for that research…
    How many women end up with a damaged cervix after over-treatment and go on to have health and obstetric issues? A premature baby?
    Lots of women end up having excess colposcopy/biopsy or end up over-treated – the lifetime risk of colposcopy/biopsy under the Aussie program is 77%…while cervical cancer has always been fairly rare…0.65% is the lifetime risk.

    I feel for all the women harmed and traumatized by this program, this group are simply dismissed – collateral damage. Tragically, we could have achieved the same or better results without the widespread negative impact on the female population. It staggers me that so many consider this an appropriate way to treat women.
    Be careful with breast screening too, go to the Nordic Cochrane Institute website and read their excellent summary of the evidence.
    How insulting that screening is promoted to women by way of celebrity endorsement or in a flippant, scary or other unacceptable manner, how about giving us all of the evidence and leaving the final decision to us!
    So while women continue to die from heart disease in high numbers the focus continues to be on the cervix and this always fairly rare cancer – it makes no sense at all.

    The Dutch are the ones to watch (for anyone who chooses to screen) they offer an evidence-based program that reduces the negative impact of screening on the vast majority of women who can never benefit from testing. They offer 5 HPV primary tests (or HPV self-testing) at ages 30,35,40,50 and 60 and a 5 yearly pap test is only offered to the roughly 5% who test HPV+
    MOST women are HPV- and having unnecessary pap tests, biopsies etc. This program will save more lives and it takes most women out of testing and harms way.
    Australia will move to HPV testing in 2017 but again, we’ll ignore some of the evidence and once again, side with excess. Young women will continue to suffer under our new program, women will be over-screened and self-testing will be blocked until you’ve declined the invasive HPV test for 6 years.
    Screening numbers will continue to fall as more women get to the evidence and make an informed decision. I’d report any doctor who tried to pressure or mislead me into testing, it’s important to find someone who respects your right to choose.

  • 2
    Kiwicelt wrote on 5 December 2016:

    It’s easy to refuse this screening which is humiliating and intrusive, when you have researched. Screening programmes have been economical with the truth and deliberately not disclosed the true incidence and mortality rates for cervical cancer, presumably so that we little women didn’t question the need for cervical screening. Many of us are now informed and angry at having been duped. When we were coerced into screening there was never any disclosure about the potential for harm. Intelligent, informed women are now able to educate the next generation. We no longer accept the official discourse.

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