"He went through six operations and was placed on a clinical trial so he could try new treatments.”
A study looking at the experiences of young people and parents of children who have been asked to take part in a clinical trial
Please note - this trial is no longer recruiting patients. We hope to add results when they are available.
This study is looking at what it is like when you or your child is asked to take part in a clinical trial. By talking to people about their experiences, the researchers hope to understand more about the sort of information and support people need.
The aim of the study is to get a better understanding of the things that really affect peoples’ lives when they are asked to take part in a clinical trial, and to find out which issues are most important to them.
Who can enter
You can take part in this study if your child has been asked to take part in a clinical trial. Or, you are a young person over the age of 12 who has been asked to take part in a trial.
The researchers will interview people whose children have been asked to take part in a clinical trial. They will interview people who decided they didn’t want their child to take part, or who withdrew during a trial, as well as people whose children are currently taking part in a trial or who have now finished taking part. The researchers will also talk to some young people over the age of 12 about their experiences. They will interview about 25 people all together.
During the interview, the researchers ask you about your experience of your child taking part in a clinical trial. They will ask questions about
- What happened to you
- What your thoughts and feeling were at different times
- How you got information
- The good and bad parts of the whole experience
The researchers will compare all the interviews to see if there are things that came up repeatedly.
The researchers will ask your permission to make an audio or video recording of the interview. And they will ask if you are happy for this to appear on a website called healthtalkonline.org. On this site, you can watch or listen to people talking about their experience of having a range of medical conditions, including many types of cancer. The researcher will show you the website before your interview.
If you agree to your interview being included on the website, you can choose if you want it to appear as a video, an audio recording or just as written words. You don’t have to use your own name if you don’t want to and you can take out anything that might identify you.
The interviews may also be used to develop training materials for health care professionals, so they can learn from people’s experiences and improve the care they provide.
The trial team will arrange the interview at a time and place that is convenient for you. It may take place in your own home and if you wish, you can ask a friend or family member to be with you. The interview is likely to last at least an hour.
There are no side effects associated with taking part in this study.
How to join a clinical trial
Please note: In order to join a trial you will need to discuss it with your doctor, unless otherwise specified.
Dr Lesley Powell
National Institute for Health Research (NIHR)
University of Oxford