Caring for the Carer
 
 

What the study is about

People diagnosed with primary brain tumours often need a lot of help from their families. Family carers provide physical care, make treatment decisions, give the patient medications, and take on other household tasks. Studies show family carers find this stressful and often become anxious as a result. Family carers need reliable information about how to help the person with the brain tumour. For example, how to manage symptoms, how to provide day‐to‐day care, how to decide what treatment the patient should have, as well as how to cope with the changes in their own lives.

Most family carers don’t receive much or any training on how to look after the person with a brain tumour. This project aims to evaluate an online intervention or website developed to provide carers with information and resources. We are asking carers of people with a brain tumour to use the website and provide feedback so that we can deliver a website that will be accessible and helpful.

 

What we are doing

To test the online intervention we want to explore how useful the information is and how it may support people who care for an adult with a brain tumour.  We are inviting 100 people aged 18 years old or above who: are currently looking after an adult with a brain tumour or; have recently looked after someone with a brain tumour to complete 2 online surveys and explore and use the website for about 8 weeks at their own pace, whenever they want to. So, participants need to have access to the internet. The design of this study means that recruitment is staggered across a few weeks and so you may be placed on a short waitlist.  Participants may also be invited to take part in a phone interview about the website.

 

What we expect to find

A pilot study of the intervention showed that the website benefitted carers because it contained useful and reliable information in the one place.  However, numerous changes to the website were made as a result of the pilot study. So we expect carers to find the current version to be useful, easy to use and contribute to addressing unmet needs and reduce levels of anxiety and depression.

 

What are our next steps

We are continuing to recruit 72 people to complete the evaluation phase. Once the evaluation is complete, we can ‘go live’ with the website and release it to the public and promote it in neuro-oncology clinics.

We have also had people who weren’t eligible to take part in the research/ website evaluation because the person they cared for had died more than 18 months ago.  As such, we have an additional study that invites those people to do an interview about what motivates them to participate in research and other community events.

 

For more information about this study

So far, we have interviewed 16 people and 28 people have participated in reviewing the website and completed the 2 surveys.  We still hope to recruit 72 people to complete the evaluation phase, so that we can ‘go live’ with the website and release it to the public and promote it in neuro-oncology clinics.

 

For more information, or to register interest in participating, please contact enquiries@coh.uq.edu.au or go to: