Caring for the carer: Testing an online program to support carers of people with brain tumours

A project aimed to evaluate a website of information and resources to help carers of people with a brain tumour.

Most families don’t receive much or any training on how to look after a person with a brain tumour. This project aims to evaluate a website of information and resources, developed to help carers of people with a brain tumour. We are asking carers to use the website and provide feedback so that we can make it as accessible and helpful as possible.

If you decide to participate in this research study, you will be sent a link to an online questionnaire (takes about 15 to 20 minutes) and once completed, we will send a link to the website. The website has a range of topics designed to help someone looking after a person with a brain tumour. You will be asked to explore the website as much as you wish over an eight-week period. After the eight weeks, we will ask you to complete a follow-up questionnaire. There is also the option to take part in a phone interview to further discuss your perceptions of the website and how it may have impacted your caring. The design of this study means that recruitment is staggered across a few weeks and so you may be placed on a short waitlist.

If you complete both surveys you will be offered a $20 gift voucher to thank you for your time. If you also complete an interview at the end, an additional $20 gift voucher will be available.

This research is part of the Brain cancer Rehabilitation, Assessment, Interventions for survivorship Needs (BRAINs) program, which is led by The University of Sydney in collaboration with 14 universities and institutions in health services.


You may be eligible to participate in this study if you:

  • Aged 18 years old or above
  • Looking after an adult with a brain tumour (e.g. glioblastoma, anaplastic astrocytoma, anaplastic oligodendroglioma, anaplastic ependymoma)
  • Living in Australia
  • Have access to the internet and an email account
  • Have a computer or device you can access the internet on 

How to participate

If you are interested in assisting with this important and exciting area of research, please contact the study facilitator:

Dr Helen Haydon by email on or by phone on (07) 3176 4462.