Page 1: Study Information

TO BE COMPLETED BY BRAIN TUMOUR SURVIVOR.

 

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

At the moment there is not much information about how having a brain tumour as a child can affect survivors and their caregivers when they become teenagers and young adults. With this research, we want to know more about the issues young survivors (like you) may have faced and the support you and your caregivers might need. We hope that by collecting information from you and others like you, we can understand more about surviving a brain tumour. More information could help us see how we can better support brain tumour survivors and their caregivers.

The questionnaire will take you approximately 20 minutes to complete. Some of the questions you will be asked will include:

“After your brain tumour do you have issues with headaches?”

“In the last month what was your need for help with feelings of sadness?”

"Have you ever used an online support group (i.e. Facebook support group)?”

It is up to you to decide whether or not to take part. 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: ss12ef@leeds.ac.uk
Florien Boele, Chief Investigator. Tel: 0113 34 32703   Email: F.Boele@leeds.ac.uk