Caring for the Carer
What is this study 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 are we doing?
We have now completed the testing of the online intervention. We interviewed 15 health professionals and 16 carers of someone with brain tumour. Fifty carers also used the online intervention and completed surveys that will help us to understand any potential impact of the intervention and how acceptable and useful it is.
We also invited researchers to examine the ‘readability’ of the intervention. They reported back ways in which to remove ‘medical jargon’ and make it more ‘user-friendly’.
We have analysed the interview data and are currently analysing the survey data. We are also using the findings from the interviews and the readability report to improve the online intervention further. Once we have completed the modifications it will be ready to ‘go live’, released to the public and promoted in neuro-oncology clinics.
Once we have completed the modifications it will be ready to ‘go live’, released to the public and promoted in neuro-oncology clinics.
What do 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?
After analysing all data, we will publish the results in research journals and explore funding opportunities that will allow the intervention to be maintained and promoted 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.
Want more information about this study?
For more information contact the team at enquiries@coh.uq.edu.au
For more information contact the team at enquiries@coh.uq.edu.au