Beyond Brain Cancer
Improving support for young people after brain cancer treatment has finished.
Surviving brain cancer and the time after you have finished treatment can be complicated and confusing. There are often new challenges, such as friendships changing, or losing some of your independence. There can also be new stresses, like feeling different, and worrying about the cancer returning or progressing (getting worse). These things can all make the transition back to ‘normal’ life difficult.
What is this research about?
We would like to invite you to help us understand what life is like after treatment for brain cancer and what you find helpful in available supports. By sharing your experiences and opinions with us you will help us create a new peer-support intervention for young people after brain cancer treatment.
In a later stage of the research we will test the new supportive program in a pilot study. We will also make improvements based on feedback from other young people who have survived brain cancer.
Who is it for?
We are currently looking for people in Australia:
- aged 15-40 years who have completed brain cancer treatment that has been successful in controlling, removing or treating a primary or secondary/relapsed brain tumour
- caregivers of young people aged 15-40 years who have experienced brain cancer
- health professionals who provide treatment and support for young people aged 15-40 years who have experienced brain cancer.
What's involved in Participating?
We would like to hear from you about what life is like after completing brain cancer treatment. We would also like to get your feedback on an existing online group-based program for young people who have survived any cancer. We want to create an intervention that provides the type of support young people truly need and want after brain cancer.
For Young People
- Submitting a consent form
- Completing a brief online questionnaire
- Taking part in a 60-90 minute videoconference interview. You can choose to do this across 2 sessions.
For Caregivers
- Submitting a consent form
- Completing a brief online questionnaire
- Taking part in a 60-90 minute videoconference interview.
For Health Professionals
- Submitting a consent form
- Completing a brief online questionnaire
- Taking part in a 45-60 minute videoconference interview.
Later on, we plan to roll out the new intervention together with community organisations to ensure that it is relevant and useful for brain cancer survivors. This part of the study hasn’t opened yet. Details of what participation will involve will be posted here at a later date.
The information you provide will remain private and confidential, except as required by law.
I have questions, what do I do?
If you would like to know more about this study, please contact us by clicking the button below. A member of the research team will get back to you shortly.
I am interested in participating, what do I do?
Taking part in research is always optional. If you would like to participate, please click the button below. We will send you some additional information and a consent form.
How is this study supported?
The study was funded by a 2020 Medical Research Future Fund (MRFF) Brain Cancer Survivorship Grant Shared Grant (ID: MRFBC000016).
This research has been reviewed and approved by the University of New South Wales Human Research Ethics Committee (HC210672).