8th European Oncology Nursing Society Spring Convention (EONS-8) - Geneva, April 26 - 27, 2012
Supportive care for men with prostate cancer
Jane Cockle-Hearne – University of Surrey, Guildford, UK
Prostate cancer is enormously common, it may or may not lead to very serious disease but there are awful problems associated with it, the decision about being screened or not being screened, being treated or not being treated. You are looking at the support of men who have prostate cancer, what was the big issue you were trying to investigate?
What we were trying to do is address the lack of consensus around how to support men in healthcare when they’ve had a diagnosis of prostate cancer and gone through treatment because the treatment brings with it such dreadful side effects that stay with some men for a long time and some men permanently.
Do you have any men who have a diagnosis and then don’t go for treatment and also need support?
Yes, of course you do because there’s a whole thing about active surveillance. A lot of men have a diagnosis, they don’t have active treatment, they have surveillance and they need support as well, yes. And they will have some symptoms that they bring with them. So, yes, it goes right across the whole disease journey but what we wanted to do was to look at the supportive care needs of men so that we could input that into the development of an education programme for nurses as to how to care for men.
What did you do, then, in the study?
What we did in the study, we talked to men who’d had had a diagnosis of prostate cancer across seven European countries and we talked to them in Denmark, France, Ireland, Netherlands, Spain, Turkey and the UK. We asked them about their need for help on a whole variety of cancer related issues; we asked them about their quality of life and we asked them about their experience of care from nurses in hospital. We had a volunteer sample, we did it through prostate cancer groups and informal outpatient channels and word of mouth and we did it online and in paper.
And what did you find?
What we found was that, of our sample, we had 1039 responses and we round over 80% of men had some level of need for help with cancer-related issues.
What sorts of need?
The majority of needs were in the psychological area – fear of the cancer spreading, worries about family and friends and their worries and worries of being out of control through treatment. That was very much across all the countries the greatest areas for need for help with those worries.
Could they not get help for those worries from their carers, the doctors, nurses who treated them?
Well, when we went on to look at experience of care we found that we were able to look at men who said they’d had advice and support versus men who said they hadn’t had advice and support across very important areas of care across the disease journey. We found that there was by far a majority, very high levels of men said they had had good support before treatment, during treatment and immediately after treatment but where they tended to have had less support was in long-term issues and emotional support and around being referred on to services that can help them with their problems. But it’s important to remember from our work that this is men’s perceptions of what care they had, it doesn’t necessarily mean that wasn’t delivered. What we are also finding is that men find it quite difficult to talk about their problems and it’s how you approach them, not only in research how you ask them the questions, but how the healthcare services approach them to allow them to open up because men feel quite vulnerable in talking about problems.
Yes, things like incontinence and impotence, it’s not easy to talk about those, is it? How do you broach those subjects?
It’s not at all easy to talk about them. That’s what we’re going to be working towards on our education programme because it’s a way of talking to men without threatening them, without affecting their vulnerabilities. That’s one of the main reasons men don’t talk about because they’re vulnerable. They also don’t talk about it, there’s a whole phenomenon about what’s called response shift where you can go through a very traumatic situation and very traumatic treatment and yet feel that your quality of life is still quite good, you re-evaluate your quality of life. It’s about the mustn’t grumble effect or the ‘Oh, it’s a small price to pay effect.’
Are you saying that there are ways of coping long-term with many of the consequences of a diagnosis and of the subsequent treatment for prostate cancer? There are ways of coping?
There are ways of coping but men need support and men need to be encouraged to find themselves inside the patient, if you like. They need to be encouraged to talk because also what we’re finding is it’s possible that support might be being delivered but they might not want to receive it. So there’s a way to talk to them and a way to get them through their vulnerabilities.
OK, you’ve been talking here at this conference for oncology nurses, what are the messages coming out of this that can be applied practically? What sorts of practical steps are emerging from your research?
Well this we’re going to be building into our education programme. It’s about communication skills and it’s about therapeutic approaches. Firstly it’s about nurses being aware that men have these difficulties; unless you’re aware, you can’t address them. Once nurses are aware of men’s vulnerabilities and feelings in this area, then if we can give them the communication skills and the knowledge to be able to broach it in the most sensitive of ways, and not necessarily in a heavy way. It can be very easy to do once you realise that you know you can give them something to do because that’s the other issue why men don’t want to talk about it, they don’t know there’s anything that can be done. So it’s not just about information but information is part of it as well.
So there is some good news that there are tricks up your sleeve?
There is some very good news. I wouldn’t call them tricks, I would call them solutions.
Well knowledge that can be applied.
Thank you very much.