Category Julia Robertson Show all
-
Brain Awareness Week
Share Brain Awareness Week on Facebook Share Brain Awareness Week on Twitter Share Brain Awareness Week on Linkedin Email Brain Awareness Week link
Brain Awareness Week (11-15 March), initiated by the Brain Foundation, is a time when we encourage you to think more about your brain health and help raise awareness for brain diseases, disorders and injuries, including brain tumours.
Every day in Australia, six people are diagnosed with a brain tumour and four will die. Brain tumour is a complex illness with the combined effects of cancer and brain injury. People with brain tumour and their families experience considerable distress related to the diagnosis, threat to life and changes in the person’s abilities and lifestyle.
Research led by Professor Tamara Ownsworth from Griffith University demonstrated the positive impact of the telehealth Making Sense of Brain Tumour (Tele-MAST) for improving mental health and quality of life of individuals with brain tumour, as the well as the potential for this program to ease the financial burden on the healthcare system . Tele-MAST is now being adopted by the Cancer Council Queensland as the statewide model of psychosocial support for people with brain tumour and their families.
Griffith University researchers (Professor Tamara Ownsworth, Dr Kasia Lion and Julia Robertson) are now collaborating with Metro South Health (Radiation Oncology, Princess Alexandra Hospital), The Mark Hughes Foundation and Peace of Mind Foundation to tackle further challenges faced by people with brain tumour and their families.
Funded by the Mark Hughes Foundation Centre for Brain Cancer, the first project partners with people with brain tumour and family members to develop and trial a communication and emotional support skills training program for medical, nursing, and allied health professionals working with people with brain tumour and their families.
"There was nothing but a cold hard clinical diagnosis....no offer of pre-surgery counselling to deal with the human side of it....we were left swinging pretty wildly in the wind.” (Ownsworth et al., 2011, p. 129)
Health professionals' (HPs) approach to communicating the diagnosis, prognosis and treatment, and response to questions and distress has an immeasurable impact on the emotional wellbeing of people with a brain tumour and their family members. HPs report gaps in their knowledge and skills and often lack confidence with communication and providing emotional support. In the first phase, we will seek input from consumers and HPs on the focus and approach to training with a view to understanding the priority areas to include in training programs and optimal approach (i.e., what and how to train HPs). For the second phase, we will focus on evaluating the impact of this training on HPs' knowledge, skills and confidence.
The second project is funded by the Metro South Health Research Support Scheme and aims to co-design and pilot a multimedia educational platform specific to the needs of people with benign brain tumour and lower-grade glioma
“We just wish that someone would have said to us right at the beginning here’s a very good guide, because when you have a brain tumour situation, oh you’re lost” (Ownsworth et al., 2015, p.7-18).
Benign or non-malignant brain tumours account for 70% of all brain and other CNS tumours. Yet, the information and support needs of this group are frequently overlooked despite them experiencing similar levels of distress and everyday impacts to those with malignant brain tumour. This project aims to improve people’s ability to find, understand and use information about brain tumour and share this knowledge with their support networks. In partnership with consumers and multidisciplinary healthcare providers, the project will result in new online resources that can be rapidly taken up in practice to improve the quality service provision and continuity of care for this population.
Professor Tamara Ownsworth, Research Director (Research Development) at The Hopkins Centre, Griffith University, is a clinical neuropsychologist with more than 25-years’ experience in rehabilitation and psychosocial intervention for people with acquired brain injury, including traumatic brain injury, brain tumour, stroke and dementia.
More about Enhancing quality of life for brain tumour survivors: https://news.griffith.edu.au/2023/07/25/enhancing-quality-of-life-for-brain-tumour-survivors/
Find out more about Brain Awareness Week: https://brainfoundation.org.au/brain-awareness-week/
-
Humanising Healthcare: A Futurist's Perspective on Disability and Pharmacies
Share Humanising Healthcare: A Futurist's Perspective on Disability and Pharmacies on Facebook Share Humanising Healthcare: A Futurist's Perspective on Disability and Pharmacies on Twitter Share Humanising Healthcare: A Futurist's Perspective on Disability and Pharmacies on Linkedin Email Humanising Healthcare: A Futurist's Perspective on Disability and Pharmacies link
A montage of images from APP 2024 including Morris Misel, Prof. Elizabeth Kendall, Julia Robertson, Julie Rogan and Dr. Chris Edwards.Last Friday at APP 2024 the Australian Pharmacy Professional's Annual Conference on the Gold Coast, Morris Misel had the privilege of chairing a powerful panel discussion on disability and community pharmacists.
These conversations are critical to shaping the future of healthcare, and this session was a shining example of why.
The panel, drawn from Griffith University's Inclusive Futures: Reimagining Disability community (a network of 500+ incredible individuals with lived experience of disability), featured Dr Chris Edwards, Julia Robertson and Julie Rogan each sharing their unique perspective on navigating community pharmacies.
From sensory overload for individuals with autism to medication delays due to unnecessary concerns, their stories highlighted the importance of human connection in healthcare.
When pharmacists took the time to understand their needs, the experience was positive. When communication faltered, frustration arose.
The best part? The audience, both in-person and online, fostered a fantastic atmosphere of acceptance. Pharmacists felt comfortable asking insightful questions and the panellists were thrilled to share their experiences.
Honest dialogue, where everyone is heard without fear of offense, is the cornerstone of progress.
Here's the exciting part: APP offered practical solutions!
From government programs allowing for more pharmacist-patient interaction to readily implemented processes, there are tangible steps we can take today.
The Takeaway: Disability Impacts Everyone
Disability affects 1 in 4 Australians, if you include those with chronic pain, as well as carers & families the figure jumps to 7 in 10 Australians are directly impacted by disability.
Imagine if any other business ignored such a significant, loyal customer base?
Pharmacies have a golden opportunity to improve access and care for a vast demographic.
By listening to the voices of lived experience, we will create a more inclusive and effective healthcare system for all.
Ready to Start a Conversation?
If you're looking to integrate lived experience disability voices into your industry or business, we can help! Whether it's a chat, panel discussion, keynote address, or strategy workshop, let's create impactful conversations that pave the way for a more inclusive future.
A huge thank you to #APP24 for providing a platform for this crucial conversation, and to Dr. Chris Edwards, Julia Robertson, and Julie Rogan for bravely sharing their stories and insights. Your openness paves the way for a more understanding and inclusive healthcare system!Video and Transcript
If you missed this exciting Guild APP panel session, view the video recording on our Inclusive Futures YouTube Account here. A written transcript is also available, please contact j.kek-pamenter@griffith.edu.au or inclusivefutures@griffith.edu.au for an accessible copy.
