Jessica – Interview 34

Jessica talks about her role as a Research Nurse. She talks about supporting parents and children through a trial. She says communication is key and ensuring that parents and children understand about the trial and what it involves.

Jessica is a Research Nurse. She works full time for the Medicine for Children’s Research Network and is based at Royal Bolton Hospital NHS Foundation Trust. She has been in this post for two years after previously being an adult nurse.

I think the most important aspect about being a research nurse is having the ability to communicate because that’s the key to everything that we do, it doesn’t matter whether we;re communicating with the children or whether we;re communicating with the necessary people that make the study work the same skills are required and communication is at the foundation of all of that

Jessica says it is important to ensure that parents understand the information they have been given about the trial.

The explanation will vary because it’s incredibly important the parents understand. And some of these studies can be very complex. They need to understand the implications of blind, they need to understand the implications of different arms, of randomisation and you need to explain to them what their chances are. If you like, if there’s a two to three, two thirds chance that they’re going to be put on the study drug and a one third chance that they;ll be on the control, they need to understand they don’t have any control over that decision. That, that decision is made by somebody else. So that’s all part of the preparation. it’s all part of the explaining what the study is about and then the next process is what does the study mean to them. What do they need to commit to because they need to understand that if they only entered the study because they wanted the drug and they’re not randomised onto that, that arm, you need them to understand that they are taking on the gamble if you lik.

Throughout a trial, Jessica ensures that parents and children are happy to continue being part of a trial. She says it’s really important to do that because people do forget there’s a get out claus. Once parents and children are participating in a trial they may meet a variety of people. Jessica says that this will depend on the type of trial and usually includes a research nurse or a nurse specialist. She says

The consultant who’s the principal investigator, they;ll see quite a lot of them, it very much depends on the study as to how many investigations they;ll have having. If it’s an involved drug study which needs a large amount of observation, there may be ECG’s that need to be done, there might be x-rays, there might be scans. All sorts of things so there may be a number of people that they will meet on the journey. But part of that, part of them signing up is being prepared that this is what’s going to happen, you know, these are the sorts of people that they will come across

Jessica, a research nurse, says parents and children need to understand that they can withdraw…

Gender Female

A lot of people are very willing to spend the time afterwards, some other people have very busy lives and they need to rush on, which is another reason why giving people as much information about what sort of commitment they need to make to the research study is important because then they know what they’re signing up for and also making people aware of the fact that if their lives do change and they want to stop taking part in the study that that’s absolutely okay and they’re not signing up for the whole duration that if they want to come out of the study they may do that and it’s not going to make any difference to the care that their child receives, I think that’s important to a lot of people that they feel that they make a signature and that commits them to the whole thing. So I do make a point of making sure that they understand that there is a get out clause because we don’t know what’s going to happen in the future, sometimes it may be that it’s just too much to be part of this so I think it’s important to stress that as well.

I think you just have to explain very carefully to the parents that it’s really important that both parties are happy to do this and that at the moment maybe this isn’t the right study for them but, you know, it doesn’t mean to say that there won’t be approached in the future. And that the reason why we, you know, we don’t ask children to take part when they’re not keen is because it, that’s not, you know, that’s not fair and equal and there are quite strict guidelines that we, you know, we adhere to and that’s right to protect all individuals out there whether they’re children, adults or vulnerable people for that matter.

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Jessica, a research nurse, explains how she supports parents and children throughout the trial…

Gender Female

I have a, like a little business card that has my contact details on them people will either text me, sometimes I have texted patients as well, using texts if that’s how they function in their lives is fantastic. It’s concise and to the point. So they can either text me, they can leave a message on my voice mail or they can speak to me on my mobile if I’m available or they can e-mail me because we run our work around e-mails so. There are lots of different ways that they can communicate with us and we do have a work mobile with us all the time so that when we’re not in our office or at our desk we’re still contactable. I think so long as they know that we can be you know, obtained at, you know, at least throughout the week it’s, that’s very important. They also need to know who to contact at the weekend, if they’re involved in a complex drug study it’s very important that they know who, what is the process that they need to go through to get help if something isn’t going right for them they must know that they can’t just wait until, they mustn’t have to wait until the next day just because it’s not office opening hours. Any research study that involves medicinal product that hasn’t been tested on children will have a will have a 24 hour contact. For example if you’ve got a study that’s run locally through a hospital, if they are likely to become ill really it’s not a bad idea for the Accident & Emergency Department to know about this study. Certainly if parents know that they can contact their consultant 24 hours a day, the switchboard can get hold of them if it’s an absolute emergency. But I think they mustn’t be afraid to report anything that they’re very concerned about because the safety of the children is the most important thing.

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Jessica, a research nurse, says it is really important that parents and children inform the…

Gender Female

I think they need to know as well that if anything happens or they get ill at all throughout the study that we as study personnel really need to know about that. If it’s a drug study we need to stress the point that if they are ill or they’ve experienced say a side effect or a feeling that they’ve never had before that it’s really important that that is disseminated to us so that we can report it and make the right decision about, you know, how it’s affected them and make sure that they get the right treatment and that sort of thing. So that doesn’t just encompass an admission to hospital it might just be you know, a disturbance to their sleep pattern for example, that doesn’t cause anything to happen within a hospital environment. But nevertheless it’s a change to them, which is why it’s all part of communication. it’s important that they know how to contact us or they know how to contact their research, their nurse specialist for example or their, or the principal investigator because that information can be disseminated down to me and I can contact the family if necessary. That all, that all boils down to prompt reporting of adverse events, serious adverse events that sort of thing.

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