Aims
This theme of the program aims to:
- Implement screening for needs and symptoms in routine practice across the country
- Understand the needs of patients and caregivers across the brain cancer trajectory to guide referral to treatment, rehabilitation, and community support
- Systematically identify areas requiring intervention development
Projects
We are developing an online portal that will be used to identify anxiety, depression, and unmet needs of patients diagnosed with brain cancer and their caregivers. As part of the development, we are seeking feedback on the look, feel and functionality of the portal from patients, caregivers, and health care staff. This feedback will be used to modify the portal by improving its useability and design.
Research Team
Dr Rachel Campbell
A/Prof Haryana Dhillon
Dr Mona Faris
A/Prof Joanne Shaw
Theme 2: Optimising models of survivorship and supportive care
Aims
This theme of the program aims to:
- Optimise models of survivorship and supportive care by implementing a centralised care coordination service nationally to support brain cancer survivors and caregivers
- Identify the features essential to effective provision of care for this population
- Develop a model of brain cancer care adaptable to differing health services and local contexts
Projects
Models of Care Coordination
Research Team
Prof Meera Agar
Prof Raymond Chan
A/Prof Haryana Dhillon
Prof Georgia Halkett
Dr Megan Jeon
Prof Brian Kelly
Ms Dianne Legge
Ms Annie Miller
Prof Tamara Ownsworth
A/Prof Kerryn Pike
A/Prof Mark Pinkham
Dr Ursula Sansom-Daly
A/Prof Joanne Shaw
Theme 3: Improving experience through access to better information
Aims
This theme of the program aims to develop a centralised repository of information resources designed to address the needs of people with brain cancer, caregivers, and healthcare professionals.
Projects
Information Resources
There are lots of resources out there for brain cancer patients and their caregivers. But people with brain tumours can have problems with attention, memory, vision, and processing. The resources out there are hard to use for people with these problems. Our work on Theme 3 is about getting and making resources that can work around those issues.
Research Team
Ms Hannah Banks
Mr Thomas Carlick
Ms Jill Chen
Dr Elisabeth Coyne
A/Prof Haryana Dhillon
Prof Georgia Halkett
Dr Helen Haydon
Ms Dianne Legge
Ms Annie Miller
A/Prof Kerryn Pike
Dr Ursula Sansom-Daly
A/Prof Joanne Shaw
Theme 4: Caring for Caregivers
Aims
This theme of the program aims to establish optimal support strategies and interventions for caregivers by building on existing information resources and case management strategies.
Projects
Delivery of a nurse-led intervention to carers to improve their preparedness to care and reduce distress. The resources developed for Care-IS have been turned into an online intervention, Caring for the Caregiver which is currently being trialled.
People diagnosed with primary brain tumours often need a lot of help from their families. 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 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.
Research Team
Dr Thea Blackler
Prof Georgia Halkett
Dr Helen Haydon
Prof Anna Nowak
Theme 5: Rehabilitation and supportive care interventions
Aims
This theme of the program aims to develop, evaluate, and implement evidence-based rehabilitation and supportive care interventions designed to address symptoms common in brain cancer survivors.
Projects
The Telehealth Making Sense of Brain Tumour Program offers up to 10 sessions of psychological support delivered by an experienced psychologist using videoconferencing. This research will help us to better understand the needs and preferences of people with brain tumour and their families and to implement the Telehealth Making Sense of Brain Tumour Program into practice. We are still recruiting and are looking forward to seeing what the results reveal!
Adolescents and young adults diagnosed with brain cancer may face many challenges once treatment has finished. There can be changes in friendships, independence, health, worries (e.g. the cancer returning or getting worse), and their mood. All these changes are difficult to cope with, especially while trying to get back into normal life. This program wants to hear what life is like after brain cancer treatment has finished and develop a group-based program specifically for adolescents and young adults diagnosed with brain cancer.
Cancer-related fatigue is a common symptom experienced by brain cancer survivors, affecting their quality of life. RESTORE is an online intervention that has been shown to improve people’s ability to self-manage their cancer-related fatigue. However, previous evaluations of RESTORE did not include any brain cancer survivors. This study aims to determine the suitability of RESTORE for people living with brain cancer.
Research Team
Ms Jessica Buster
Dr Rachel Campbell
Dr Katarzyna Lion
Prof Tamara Ownsworth
Dr Kerryn Pike
A/Prof Mark Pinkham
Dr Ursula Sansom-Daly
A/Prof Joanne Shaw
Ms Sian Virtue-Griffiths