By Claire Friedemann Smith, Charlotte Vrinten, and Monica Koo

Words are powerful. One area where this is undeniably true is in our communication around health and illness: the words we use have the power to comfort and support, or isolate and dishearten. The tricky thing is, one person’s call to arms could be another’s final straw. This makes it very important to think about how we as researchers, and the wider medical community, talk about illness, particularly illnesses that are very emotionally charged such as cancer. Last week, the cancer screening and early diagnosis group at the HBRC discussed a presentation on this subject given by Professor Elena Semino about the use of metaphors in communication around cancer, recorded at Cancer Research UK earlier this year.

Professor Semino presented the results of a large mixed methods study she had led into the use of metaphors by patients and healthcare professionals when talking about cancer. The team used both qualitative and quantitative methods to analyse two datasets based on online material by patients and healthcare professionals. The researchers found that the metaphors used by patients and healthcare professionals broadly fell into two categories: ‘violence’ and ‘journey’ metaphors. Violence metaphors were used to describe cancer as an enemy to be fought, using drugs and medical research as weapons, with the aim of conquering the disease and winning the battle by surviving the cancer. Journey metaphors, on the other hand, describe cancer as a road to travel, with an uncertain destination.

The use of metaphors is probably familiar to any of us who have seen adverts raising money for cancer research or have had personal experience of talking about cancer. This study found that using these metaphors could have both positive and negative consequences for patients. For some patients, the thought of fighting a battle to defeat cancer galvanised and motivated them in their attitude towards cancer treatment, and patients often encouraged each other and described success in treatment using violence metaphors. But others felt disempowered by this metaphor: they felt that it was the disease conquering them rather than the other way around. Professor Semino highlighted how violence metaphors may be particularly inappropriate for terminal cancer patients for whom thinking of cancer as a “losing battle” could be demoralising and could lead to feelings of being blamed and stigmatised by others for “not fighting hard enough”.

So were journey metaphors the better option? The researchers found that journey metaphors were similarly used in both positive and negative ways. Some patients used journey metaphors to express a sense of purpose and companionship: those with new diagnoses were being led by others who had started their journey before them and understood what they were going through because they had travelled the same road. Other patients used the journey metaphor to express their disempowerment and lack of control as they were travelling against their will, on a journey they could not control, and along a road they did ‘not even wish to be on’.

There are many other metaphors that may be used to describe cancer: for example, BBC producer Andrew Graystone described his cancer as “an unwelcome lodger”. Others have described cancer as a “scary fairground ride” where you just have to hang on until you can get off. Professor Semino concluded that when discussing cancer with patients, we should adopt a particular metaphor depending on the individual patients’ preferences, and in mass communications we should use metaphors that work positively for most people and do not harm others.

With this in mind, Professor Semino and her colleagues are developing a “metaphor menu” for cancer patients to provide alternatives to the common battle and journey metaphors. This led to a lot of interesting discussion here at the HBRC around how this would be presented to patients. When would it be appropriate to offer it? How effective would it be when violence and journey metaphors continue to dominate cancer discussions in the mass media? Although we did not come up with any definite answers to these questions, we are very much looking forward to seeing how the metaphor menu will be taken forward.

It is also interesting to consider the implications of violence metaphors for public health. Recent work by Hauser and Schwarz suggests that violence metaphors may make people less likely to engage in some cancer prevention behaviours, such as stopping smoking or limiting alcohol intake. But just like Professor Semino’s research showed, not all violence metaphors are bad. A study on flu vaccinations found that violence metaphors actually increased people’s willingness to get a flu jab. The question then becomes: when is it appropriate to use violence metaphors in public health communications?

Although more research on the topic is needed, Hauser and Schwarz suggest that violence metaphors encourage an aggressive attitude towards an enemy and promote an active attack on this enemy. So violence metaphors may be helpful when we need to actively do something to protect against cancer (for example, exercising or eating more fruit and veg), but may not be so helpful when we need to limit ourselves to reduce the risk of cancer, as with stopping smoking, reducing alcohol intake, or losing weight. Violence metaphors may be inappropriate in these circumstances, and may even be harmful for public health.

Professor Elena Semino’s presentation and the discussion that followed shed light on an issue that is rarely at the forefront of our minds as cancer researchers. It emphasised the importance of language in how we understand and process our experiences, and how we express our emotions and feelings. Importantly, it also highlighted that the ways we choose to talk about cancer may positively or negatively influence patient experiences and public health. As we get better at preventing, detecting, diagnosing, and treating cancer, it will be interesting to see how the language we use to talk about cancer evolves in the future.

References
Graystone A. (2013) Viewpoint: Did Richard Nixon change the way people describe cancer? BBC News Magazine.

Hauser DJ, Schwarz N. (2014) The War on Prevention: Bellicose Cancer Metaphors Hurt (Some) Prevention Intentions. Personal Soc Psychol Bull 41:66–77.

Scherer AM, Scherer LD, Fagerlin A. (2015) Getting ahead of illness: using metaphors to influence medical decision making. Med Decis Mak 35:37–45.

Semino E, Demjen Z, Demmen J, Koller V, Payne S, Hardie A., et al. (2015) The online use of Violence and Journey metaphors by patients with cancer, as compared with health professionals: a mixed methods study. BMJ Support Palliat Care 1–7.

Semino E. (2014) A ‘metaphor menu’ for cancer patients. Ehospice UK.

As more and more people are likely to get a cancer diagnosis, trying to find ways to manage the long-term effects of cancer becomes ever more important. Cancer survivors are not only at risk of their cancer coming back but they are also at risk of heart disease, osteoporosis (bone thinning), and diabetes.

Making lifestyle changes following a cancer diagnosis may be one way to reduce some the long-term effects of cancer. For example, changing to a low-fat diet has been shown to reduce the chance of some types of cancer coming back. Similarly, being active after a cancer diagnosis may reduce the chance of getting one of the other conditions that are common in people with cancer. Stopping smoking also improves survival after a cancer diagnosis.

In light of the evidence from these research studies, many cancer organisations have produced lifestyle recommendations for cancer survivors (http://www.macmillan.org.uk/information-and-support/coping/maintaining-a-healthy-lifestyle). However, it seems there is room for improvement in the number of people following these guidelines. Although health professionals may be in a good position to give advice on lifestyle changes after a cancer diagnosis, until now it was not clear which factors determine whether or not they do it.

To find out, our researchers asked over 400 health professionals ranging from doctors, nurses and allied health professionals (e.g. dieticians and physiotherapists) questions on awareness of lifestyle guidelines for cancer survivors, current practices with regard to giving advice on smoking, diet, exercise, weight and alcohol, and things they felt would stop them from giving advice. Most respondents were nurses, and most worked with a range of different cancer patients.

The results showed that although a proportion of health professionals (about one third of the sample) were not aware of any lifestyle guidelines for cancer survivors, most reported to give some form of lifestyle advice to their patients. However, often they discussed lifestyle with fewer than half of their patients and did not talk about all lifestyle behaviours. Respondents who were aware of lifestyle guidelines were more likely to give lifestyle advice on all lifestyle behaviours. In contrast, health professionals who believed that a healthier lifestyle would make little difference to cancer survival were less likely to recommend lifestyle changes to their patients.

The study had a big sample which means that findings are unlikely to be due to chance. However, because people responded voluntarily, they may be more likely to be interested in lifestyle advice and cancer than other health professionals. In addition, because most respondents were nurses, it is impossible to say whether the results would be the same had we asked more doctors and allied health professionals.

Nonetheless, these findings show that it is important to help health professionals keep up-to-date with the latest research findings on lifestyle and cancer survival because their endorsement may be important in motivating cancer survivors to make lifestyle changes.  In a previous study, our researchers have shown that cancer survivors would welcome this advice from health professionals. Making lifestyle advice a formal part of cancer care might help ensure that all cancer survivors are aware of this important information.

Article Reference: Williams K, Beeken RJ, Fisher A, Wardle J: Health professionals’ provision of lifestyle advice in the oncology context in the United Kingdom. European Journal of Cancer Care. DOI: 10.1111/ecc.12305 b

Most well-known for its link with cervical cancer, human papillomavirus (HPV) has been linked to a number of other cancers including some cancers of the head and neck.  The number of HPV-related head and neck cancers diagnosed in the UK has doubled in recent years so health professionals in this field are finding themselves having to talk to their patients about HPV.
Health professionals have an ethical obligation to ensure accuracy and transparency when explaining to patients that their cancer has been caused by HPV. But because HPV is sexually transmitted, discussing it could be a potential challenge for health professionals with little experience of discussing sex with their patients. In order to understand the experiences and challenges of talking to head and neck cancer patients about HPV, we interviewed fifteen health professionals (surgeons, oncologists, specialist nurses and allied health professionals) working in the field.
Most of the health professionals we interviewed did talk to their patients about HPV, but there were mixed views about the benefits of this. Some felt it was useful for patients to know the cause of their cancer, particularly because HPV-related head and neck cancer has a better prognosis than the more ‘traditional’ tobacco and alcohol-related cancers. Others felt that as patients’ HPV status would not affect their treatment, such discussions were unnecessary.
Health professionals discussed how HPV-related head and neck cancer patients can have different rehabilitation needs to those with head and neck cancer that’s caused by alcohol and tobacco because they tend to be younger and in better health. For example, one speech and language therapist said: ‘we’ve got a longer period of survivorship for younger people who are still actively employed and so their functional rehabilitation becomes a bigger issue’. The impact that an HPV-related diagnosis could have on relationships was also considered important.
Participants identified some key messages about HPV that they felt were important to include in their discussions with patients. Explaining to patients that HPV is very common and linked with normal sexual behaviour helped to normalise the infection. Drawing parallels with cervical cancer and mentioning the HPV vaccination had also been found to be helpful.
The range of experiences discussed suggests a need for clinical guidance to ensure that patients are receiving consistent messages. In line with a previous study of dentists in the United States, most of the health professionals we interviewed felt that additional training could help them improve their knowledge about HPV and their communication with patients. Further research is needed with patients to explore what being diagnosed with HPV-related head and neck cancer means for them.

Article link:
Dodd R.H; Marlow L. and Waller J. Discussing a diagnosis of human papillomavirus oropharyngeal cancer with patients: a qualitative study of health professionals Head and Neck
http://onlinelibrary.wiley.com/doi/10.1002/hed.23916/pdf