Cervical cancer: how nurses can dispel myths and offer support around HPV
A survey conducted for Jo’s Cervical Cancer Trust reveals that myths about human papillomavirus could have damaging effects on women’s lives and relationships
Nurses can help dispel the myths about the human papillomavirus that can damage relationships and harm women’s confidence and mental health, according to Jo's Cervical Cancer Trust
- Nurses should check patients’ understanding of the human papillomavirus (HPV) and be prepared for difficult questions
- HPV is a normal consequence of sexual intercourse and usually resolves itself naturally
- Ignorance can affect relationships, confidence and mental health if infidelity is suspected
Stigma and misunderstanding about human papillomavirus (HPV) can have a damaging effect on women’s lives, according to a cancer charity.
A survey of more than 2,000 women conducted on behalf of Jo’s Cervical Cancer Trust found that one quarter had not heard of HPV and nearly half were unclear about its connection to cervical screening.
The charity fears that with HPV primary screening being introduced across the UK, lack of understanding about the virus could damage relationships if infidelity is suspected, and may affect women’s confidence and mental health.
Jo’s Cervical Cancer Trust is calling on nurses and other health professionals to help reduce the myths and stigma around HPV and support people to better understand the virus.
HPV is common. In an RCN clinical resource for nursing staff, it is described as a normal consequence of sexual intercourse. HPV lives on the skin, so it is easy to contract and difficult to prevent. Most people will become infected at some point in their lives but in 90% of cases the virus will resolve naturally within two years.
of all cervical cancers are caused by high-risk HPV
There are many different types of HPV and most carry little risk. But some high-risk types are linked to cancer, including cervical cancer.
One third of women surveyed felt HPV was a taboo subject
HPV-related cancer in men is less common. There are about 640 cases of penile cancer in the UK each year, compared with 3,200 new cases of cervical cancer. But 40% of penile cancer is associated with high-risk HPV.
The NHS cervical screening programme invites women aged 25-64 for screening every three years. In England and Wales, women are now tested for HPV first, with the sample checked for cell changes if HPV is found. Scotland, where cytology is currently used to check for signs of abnormal cells, will move to HPV primary screening in March, with Northern Ireland expected to follow suit.
What is HPV?
There are more than 200 types of human papillomavirus (HPV) and the virus is passed on through skin-to-skin contact. Anyone who has had any form of sexual contact is at risk of contracting HPV.
Some types of HPV cause benign skin warts (papillomas) on, for example, the hands or feet, while about 40 types affect the genital area. Some of these are low risk for cervical cancer and about 13 are high risk. Nearly all cases of cervical cancer are caused by high-risk HPV.
Both men and women are at risk of HPV infection. About 80% of people will get at least one type of HPV during their lifetime.
An HPV infection usually has no symptoms. There is no treatment, but in most cases the immune system will clear it. In women, persistent HPV infection causes changes to the cells of the cervix. These abnormal cells may develop into cancer.
The HPV vaccine programme was introduced in 2008 for girls aged 12-13 and from September 2019 for boys of the same age. The vaccine does not protect against all forms of HPV infection so it is important for women to continue with regular cervical screening.
But in a message to coincide with Cervical Cancer Prevention Week (20-26 January), Jo’s Cervical Cancer Trust says myths and shame around HPV must be stripped away. Among the women the trust surveyed, one third felt HPV was a taboo subject and four in ten said they would not want anyone to know they had it.
As more women are tested for HPV, the charity says nurses must be prepared to answer a rising number of questions about the virus.
Jenny Greenfield is a nurse manager and cervical screening specialist based in a GP practice near Brighton. She runs screening training programmes for nurses across Surrey, Sussex and Hampshire and is part of Jo’s Cervical Cancer Trust’s Ask the Expert panel, which answers questions from anyone with concerns about cervical cancer, screening or HPV.
Many women are deeply troubled by an HPV diagnosis
The charity has seen a 50% rise in queries about HPV over the past year and Ms Greenfield says many questions come from women who are deeply troubled by an HPV diagnosis.
of eligible people attend cervical screening
(Source: Cancer Research UK)
‘They feel dirty and shameful, and they’re accusing their partners of cheating on them when it’s not true,’ she says. ‘For us as nurses, we need to explain to them what HPV means.
‘In the training we do, we’re reiterating the whole time that when a woman comes in for a smear test, it’s not just about the test. We also need to tell them what’s going to happen with their results and, if they are HPV-positive, what will happen next. Then they’re not left in the dark if they get a letter landing on their doormat telling them they’re HPV-positive.’
For women who attend screening and are found to have cervical cancer, if they have little understanding of HPV and are also told they have the virus it can be confusing and frightening, as ‘Kristen’ explains in our case study.
Case study: ‘I kept myself to myself out of fear of what people would think’
Kristen was 44 when she was diagnosed with stage 4b cervical cancer in 2017.
‘I knew nothing about HPV before I was diagnosed with cervical cancer. I knew that smear tests looked for cell changes but didn’t know these were caused by HPV and that this was also something they were testing for.
‘On top of a cancer diagnosis HPV was something extra to worry about – at least I had heard of cancer. It was another layer of fear and confusion.
‘At first I felt dirty and thought I had done something wrong. It put a strain on my relationship. My partner didn’t understand it either and initially I blamed him for giving it to me.’
‘Someone I needed to rely on simply didn’t understand’
‘When I told him, you expect support and love. I did not anticipate such a strong reaction. He said, “That’s a sexually transmitted disease. I’ve not given you that. Who gave you that?”
‘Someone I needed to rely on during the toughest time of my life simply didn’t understand what was going on and had the wrong idea. In the back of my mind I thought he had given it to me. I was also scared to be intimate with him for fear of the cancer coming back. Then it made me question past partners.
‘Lots of people meet friends or get mutual support from those they meet during cancer treatment. But because of the HPV stigma I kept myself to myself out of fear of what people would think, and felt very alone. No one should feel like this, especially when you have the biggest fight ever against cancer.
‘I struggle with depression now and it’s still hard to talk about’
‘Even now I don’t feel totally at ease with my post-cancer body and have a lot of hang-ups. There are so many questions about HPV that are difficult to answer, such as am I now at higher risk of a different HPV cancer? Could I be putting my husband at risk?
‘Cancer takes a toll emotionally. I struggle with depression now and it’s still hard to talk about. I think it would have been better if I had been able to talk to people throughout the diagnosis.
‘I feel much more able to talk about it now. I’m really open in the hope that it prevents others from going through what I went through. I’ve found that a lot of people don’t know anything about HPV, and we need to get the facts out.
‘It shouldn’t be that the first time you hear about it is when you’re being diagnosed with cancer and you’re totally blindsided by both of these things.’
Jo’s Cervical Cancer Trust head of support services Rebecca Shoosmith says: ‘We know from our support services that the first time some women hear about the virus is when they receive their screening results. This can add confusion at a potentially already anxious time.
‘Going for screening can already be a difficult test, including for survivors of sexual violence and those who experience pain, and if we do not reduce the level of stigma and fear attached to HPV we are potentially only going to be adding more barriers to the test.’
To support nurses in their discussions with patients about HPV, Jo’s Cervical Cancer Trust has produced a guide that includes key facts about the virus and tips on how to address fears, myths and misunderstanding about it.
How to talk about HPV
Jo’s Cervical Cancer Trust offers this advice to nurses on talking to patients about HPV:
Ask open-ended questions to check the person’s understanding of and feelings about HPV. For example: ‘Can you talk me through your understanding of what HPV is?’
Be mindful of the language you use. Ensure you are not adding to the stigma, fear and shame surrounding HPV.
Acknowledge that HPV is confusing. Be prepared for difficult questions or questions where there is no right or wrong answer, such as whether to tell sexual partners.
Offer reassurance about HPV. Give them facts, and use the opportunity to talk about HPV myths and stigma.
Avoid too many numbers and statistics. Some patients may want statistics, but try not to overwhelm them.
Some women, such as those with HIV, smokers and women who have had four or more full-term pregnancies, are especially vulnerable to HPV, says Ms Greenfield, making regular screening particularly important.
‘All these things can knock a woman’s immune system and give her more reason to be HPV-positive,’ she says.
new cases of cervical cancer worldwide in 2018
(Source: World Health Organization)
But she says younger women who were vaccinated against HPV at school assume they are no longer at risk of cervical cancer.
‘That’s a big issue. We’ve noticed that 25-year-olds are not coming in for their smear tests because they’ve had the vaccine and they now think they’re safe.’
Her observation is backed up by figures from Cancer Research UK which indicate that cervical screening rates are falling, with the decline greatest in women under 50 and, in particular, in the 25-29 age group.
Time to promote the facts about HPV
Jo’s Cervical Cancer Trust chief executive Robert Music says it is time to do away with the emotion and falsehoods surrounding HPV and promote the facts.
‘No one should feel ashamed about having HPV,’ he says. ‘We must normalise the virus to reduce the emotional impact of diagnosis and ensure people know where to get trustworthy information and support.
‘This means stripping away the stigma and getting the facts out. Smear tests are the best protection against cervical cancer and we want women to understand what their results mean, instead of having to navigate myths.’
Daniel Allen is a health writer
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