A new website, Caring for the Carer, is aiming to revolutionise how advice and support is provided to those caring for a loved one with a brain tumour. The cross-organisational project is asking carers of adults with primary brain tumours to use the trial site and provide feedback to help developers optimise the content.
Australia has seen a dramatic increase in the caring responsibilities of family members and friends in recent years. A decline in available health care resources, shortage of health care providers, and increase in outpatient care have meant more and greater caring responsibilities are falling on family members and friends.
Most carers receive little to no training, despite the unique and challenging impacts of brain tumours on physical functioning, cognition and behaviour. This means individuals caring for people with brain tumours face significant issues in managing their carer responsibilities, beyond that of other cancer carers, and often have a high level of unmet need and distress. One previous study of bereaved carers found that 60% had experienced burnout during the person’s illness.
Caring for the Carer provides information on how to best support someone with a brain tumour, such as how to manage symptoms, provide day‐to‐day care, decide what treatment the patient should have, as well as how to cope with the changes in the carer’s life. It will be available to those who need it 24 hours a day and all over the country.
Early users of the site have described feeling less alone and expressed how helpful the information was. One anonymous user said: “When I went through the website, each section, I was like, ‘Oh my god, it's all here! This is awesome! Why did I not receive this years ago?’”
The website is being developed as a collaboration between the University of Queensland’s Centre for Online Health, Centre for Health Services Research; Queensland University of Technology, University of Western Australia and Curtin University. The online resource forms part of BRAINS (brain cancer rehabilitation, assessment, interventions for survivorship needs), a broader program of research involving 14 universities and institutions in health services and funded by Medical Research Future Fund.
Project lead Dr Helen Haydon, Psychologist and Research Fellow at UQ, said: “This national collaboration will address the plight of people with brain cancer and their caregivers.
“We know that brain tumours present unique difficulties in terms of care and that caregivers’ needs for support are currently not being met. Early feedback on the site has been extremely positive, and we hope that Caring for the Carer will provide people with the comprehensive information they need and confidence in their caring.”
Image credit: Christin Hume/Unsplash
Media: Dr Helen Haydon, h.haydon@uq.edu.au , +61 (0)7 3176 4462; UQ Communications, med.media@uq.edu.au, 0436 368 746.
