Helena says that communication is key to her role as Senior Research Nurse. Helena explains how her role helps to support parents and children when they participate in a clinical trial, from beginning to end and after the trial has finished.
I’m a senior research nurse for the Medicines of Children’s Research Network at the moment. I;ve been working in research for about nine years now involved in various stages of consenting patients and families. I;ve worked with children and adults in research so I;ve been involved in parent consent and adolescent and children consent and assent as well
Helena ensures that parents understand the information they have been given about a trial. Especially for a clinical trial of a drug and I think some typical questions that people ask is Am I the first one to have the drug which is what people will ask. Has it been tested on other people and we would always say if it has yes obviously, you know we would tell the truth and say yes it has. It may be that the trial that we;re doing is the first time it’s been tested in children, but there’s been adult trials before. So you would say it’s the first trial on children but it has been tested on adults and that’s where the information that we give comes from. It comes from previous studies so the potential side effects or adverse events comes from previous studies
Helena talks about her role in giving support to families when they have given consent for their child to take part in a trial. She explains how it is important for parents and their children to understand what is involved in the trial and who they are likely to meet. This can vary depending on the type of trial. She ensures that parents and children are aware that they can stop the trial at any time without giving a reason.
Helena sums up her role’ I;ve been a research nurse for nine years and my role generally includes consenting and recruiting families to research has been giving information out. Discussing with families, letting them ask questions and answering them about the practical side of research about the, yes where do I park when I come, what time of day are the visits. And anything medical I;ve then referred on to the medical team and fed that back or got them to contact them back. And we;re also involved in recruiting patients in a slightly different way because I do a lot of training and education to researchers in our area. So I’m trying to help, make sure that people know there are guidance and regulations and make the consent and communication a positive thing for families. I’m also involved with patients that are on studies, once they;ve consented that’s not just the end of it, it’s important to make sure throughout the study that they’re happy to continue and if they;ve got any worries we can allay those or if necessary withdraw them from the study. So it’s not just the consent at the beginning it’s an ongoing process right to the very end and even beyond the end of the study like we;ve discussed about getting them information as well