Funded by MRFF, the multi-institutional BRAINS (Brain cancer rehabilitation, assessment, interventions for survivorship needs) project aims to transform survivorship in people with brain tumours. Collaborators include ten universities in Australia as well as The Psycho-oncology Cooperative Research Group (PoCoG). The broader project encompasses 5 themes and The Centre for Online Health at UQ will be leading Theme 4: “Caring for Caregivers”. Caring for Caregivers builds on previous work by optimising an online psychoeducational program for carers of people with brain cancer. Interactive and audiovisual elements will be incorporated into the online program, and content broadened to suit a range of carers.
Individuals caring for people with brain cancer have many unmet needs and distress which impact their capacity to provide support and care, as well as lead to poorer long term psychosocial outcomes. The aim of the online program is to:
- improve understanding of the impact of brain cancer and treatment on quality and quantity of life;
- provide evidence-based information and strategies in an accessible way;
- increase caregiver coping and provide instrumental support as a person cares for a person with brain cancer; and
- increase access to reliable resources regardless of location or time of day.
COH’s evaluation will determine the efficacy of the improved Care for the Carer website in its ability to increase preparedness in informal carers of people with brain cancer and assess the impact of the program on carer distress, anxiety, supportive care needs, mastery and carer-clinician communication.
Refer to the below flyer to help us test an online program that supports people caring for someone with a brain tumour.
