Resources for adults

Why have you asked me or my child to take part?

We have invited you or your child to take part because you or they have had surgery for a brain tumour. Your experiences are really important. We want to know what was important to you, your child and your family after their operation, and what impact it has had on you or your child.

We would like to interview you about you or your child’s experiences after surgery. By doing this we can make sure that your views are included when deciding what outcomes are most important. The most important outcomes are the ones that future research will always report.

Stage 2 – Interviews

What will happen if I take part?

We will conduct the interviews online on Microsoft Teams. To take part you will need access to the internet through a phone, tablet or computer. Each interview will take 45-60mins.

What happens after the interview?

After the interview we will review what you have said. We will use the outcomes you have said to make a survey. We will ask several groups to take this survey to say what outcomes they think are the most important. These groups include children and young people, their carers, healthcare professionals and researchers. You can take the survey too. The most important outcomes will be included in future research.

The information sheets below have more details!

If you want to take part in the interviews please sign up using the expression of interest form below!

Stage 3 - Survey and consensus meeting

What will happen if I take part?

If you agree to take part we will send you a link and instructions on how to do the survey. It will be online, you will need access to the internet through a phone, tablet or computer. There will be two surveys to complete in total. We expect each to take no more than 30 minutes.

The survey will be a list of unwanted outcomes. We will ask you to tell us how important it is to always measure and report each one. We will give you full instructions on how to complete the survey. If you need help or have questions you can contact us, and we can arrange a time to call you.

Several different groups will take the survey. This includes children and young people who had the surgery as well as their carers, health professionals and researchers. Your individual results will be confidential.

What happens after the Survey?

At the end of the second survey we will analyse the results. Then we will invite a group of children/young people who have had a brain tumour, their carers, health professionals and researchers to a meeting. This meeting will be online. The purpose of the meeting will be to discuss the results and agree the final core outcome set.

It won’t be possible for everyone who completes the surveys to attend the meeting. If you would like to attend, you can tell us by answering a question at the end of survey 2. If you say you would like to take part we will send you more information about the meeting.