ICCN 17

Discussing the patient experience

Kicki Klaeson – Linkoping University, Sweden



Can you tell us about your presentation?

In cancer care the last couple of years there has been an increased interest about how sexuality issues, how important it is, but we discuss very much when should we talk about it and it’s difficult to talk about it. Also you can see in papers that patients are nearly never asked about these things but they want to discuss it with us. So today I thought I got a good response actually and many of the nurses in the audience, they were excited afterwards because they thought that they had this feeling of ‘Yes, it’s like that.’ Perhaps I learned something today.

Can you tell us about your qualitative study?

I wanted to go beyond the biomedical perspective because in a way we know a lot about the biomedical perspective but I’m a nurse and it’s more interesting for me, I think, to know how it really feels as a human being being diagnosed with breast and prostate cancer. And also I chose a target population, middle-aged people between 45 and 65 years, because we know also that younger people are more vulnerable to sexual changes and so on.

What types of comment did you get from patients regarding sexuality?

Two of the studies were phenomenological and then you just have one brief question – how does it feel? Can you tell me something about it? So it’s a lot of different experiences coming up but I also have done some focus group interviews with four or five people in the same group and then they can discuss more of the norms in the society and so on. So I think I have caught the individual perspective and the norms in the society.

Were there any themes?

In the phenomenological interviews we want to have a sense, in a way, and in the females’ interview it was couched in a metaphor like a bird that is pinned and unable to fly any more. In the men it was more about losing the elixir of life.

What can we do with this information?

I think that we have to be more focussed about the human experience in our patients, not just being a patient and having all the symptoms and so on. We love lists of symptoms and so on, and I wouldn’t say that it’s not necessary because it is but you should be aware that the person you have in front of you, you should just ask her or him, ‘How are you? Is there something that you want to discuss with me?’ and so on. Then if they say something that you know is interesting: ‘It’s hard to be a man,’ for example, ‘But why do you say that? Can you explain?’ and so on because also a finding was that both women and men, because the majority of them lived in co-habiting relationships, in harmony really, but they couldn’t talk with each other, it was impossible to put into words.

Do you think all nurses ask patients how they feel?

No, they don’t and I think that also depends on how you are because you know when you’re working in cancer care and in hospital and so on, whatever care you give there are many, many things that are very difficult to discuss with patients – death, sexuality and so on. Some of us are better trained and more mature and interested and so on, so perhaps you work on a clinic and you know that ‘My colleague, she is very good at it,’ like my colleagues, they often tell me, ‘Can you go in and talk and discuss with the patient?’ and so on. But also if you are aware of the importance of it then you just can try to ask and so on and then you are more comfortable about it and I think it will be like that in the future because, you know, the patient in the future, they will be more… they want more of us than today, I think.

Do you think education can help nurses address difficult issues?

I think that’s very important, actually, that this programme then, that they are trained in a way that they know what sexuality means for themselves at first and then we can give them something to work on because everything starts with yourself.