Page 1: Study Information



Hello and thank you for expressing an interest in this research!

This research wishes to understand more about how having a brain tumour in childhood can affect survivors and their primary caregivers (e.g. parents, grandparents, siblings) when they become young adults. We are asking people to take part in a questionnaire to find out more about their experiences and support needs. Having more information in this area could help us to see how we can better support brain tumour survivors and their caregivers.

The questionnaire will take you approximately 20-30 minutes to complete. Your participation in this study is entirely voluntary and you can stop taking part at any time.  There is a possibility in the questionnaire that we may ask you about some things that you find difficult or upsetting, but you can skip any questions you do not want to answer. If you do not know the answer to any questions or you feel they are not relevant to you, that’s OK, you can skip these questions.

It is very important to us to keep your information safe.  The answers you provide in the questionnaire will only be seen by the research team.  All your data will be stored securely on a University of Leeds electronic database. When we present any findings of our study we will not identify you in any way. 

If you have any questions or concerns about the study or questionnaire please get in touch with one of the researchers – contact details below. Equally, if you would rather complete the questionnaire on paper or over the phone then please let us know. 

Emma Nicklin, PhD Student. Tel: 0113 20 68330   Email:
Florien Boele, Chief Investigator. Tel: 0113 34 32703   Email: 

If you submit your answers you will not be able to return to this page.