EONS 2012

Supportive care for patients with children and families

Yvone Zalders-Steyn – Hanze University Groningen, The Netherlands


If a patient has cancer and that patient has children at home, a whole family, there are all sorts of psychological factors at work which the oncology nurse needs to take note of. You’ve been talking about this here at the conference in Geneva, can you tell me first of all what are the big issues?

Well the big issues seem to be that parents need professional guidelines to support their own children.

And should they get that from the nurse?

That’s what we think they should get from the nurse and that’s also what parents would like to get from the nurse because it’s more informal and more easy-going than from a medical oncologist or something like that.

Can you tell me about some of the things typically which go wrong in families when one of the parents has cancer?

The parents want to hide their worries for their children and research points out that it’s not good because children know what’s going on and they are more anxious when they are not told by their parents about what’s going on. So that’s very important and parents need to hear from the ones who should know that it’s needed, that it’s alright and it’s more positive, will be more positive, for their children if they talk in openness with their children. Also, it seems very important that parents know a little bit about how their children may react so then they’re a bit more sure, or self-confident I should say, about how to talk with their children.

Now you’re speaking not only from experience and knowledge, you’ve conducted a study on this. Can you tell me about the study, what you did and what you found?

We did this study in the northern Netherlands until now because there were international results about oncology nurses not capable enough of giving this support. We wondered if some of these results also could be found in the Netherlands and we focussed on the northern Netherlands because we are of the Hanze University.

And you did…?

We did the research with semi-structured interviews with twelve oncology nurses and what came out was in line with international results, namely that oncology nurses, or nurses working in oncology wards, were not enough equipped to support these parents on these topics. They didn’t know about possible reactions of children depending on the developmental stages they were; they didn’t know how to talk, how to ask questions, because of this lack of knowledge. They didn’t know that open communication would be helpful; they didn’t know that cancer in a parent would bring insecurity in the family system so this was a bit surprising.

And my reading of some of these results is that the oncology nurses themselves were very concerned and wanted to be extremely helpful but found themselves a bit lacking in the resources. For instance they need, I gather, to be rather proactive and to know what to do and then do it.

Exactly, and they couldn’t be proactive because they had this lack of knowledge and skills. They really see this psychosocial care for these parents on behalf of the children, really as a core business for nurses.

So they accept that it’s a core business, you accept this, everybody thinks it has to be done. You conclude that training is needed, can you tell me what sort of training and can you give us the confidence that the tools are available to make it more possible for the oncology nurse to provide this psychological support, the reassurance that the patients and their families need?

The sort of training the nurses mentioned was a combination of knowledge, providing knowledge, and then putting this knowledge into practice in skills training. We are developing a training momentarily in line with what already has been done in Australia, training of this kind where there are hopeful results of the effects of the training meaning that nurses who were trained are more confident to give this kind of supportive care.

Could you give me an example of the sorts of information that can really help in these situations? You mentioned openness to children, not hiding from them, what information, what knowledge can you give?

It’s about these things that nurses can reassure parents that if their children are a bit aggressive, maybe, that it can be linked to hidden information. Nurses need to know that adolescents don’t want to bother their parents so this knowledge is if they know that all these consequences are there if a parent has cancer, and if they are given all this information and trained in this communication skills training, by giving feedback so they know that they’re doing wrong or well, that sort of information seems to be very, very important and the training element seems also to be very important because only having knowledge does not mean that they are self-confident enough, that’s also what this other training…

So what would be your few messages to call for action in this topic?

That we are developing this training and that the nurses in the wards take notice of all this and not only on the wards but in the whole organisation and not only the nurses but those who can provide time for the nurses. It seems so very, very important, also because of the consequences in later lifetimes for the children because one-third of the children of these parents develop major problems. In cost for the healthcare system it’s very important and one-third of the children develop a lesser, minor problem and one-third develop no problems. But that’s the message – please help us to support the nurses because the nurses are so very much in contact with the patients who are really sending out signs of help, crying for help.

Yvone, thank you very much indeed.

Thank you.