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National Pain Week: Making our best guess of the world - how personal narratives help and hinder the chronic pain experience
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The Hopkins Centre and Griffith Inclusive Futures: Reimagining Disability invite all members, subscribers, individuals with lived experience of pain, practitioners and anyone with an interest in chronic pain management to join us for this very special Hopkins Hour for National Pain Week, 2024.
Originally created by Chronic Pain Australia, National Pain Week is Australia’s annual awareness event for chronic pain and aims to draw attention to the experience of people living with chronic pain. National Pain Week is a significant awareness campaign for many people who have experienced brain and spinal cord injury, who experience persistent pain, as well as those living with other disability. It’s equally important for pain researchers, clinicians, allied-health industry professionals and all others working in the field to comprehend the pain experience for our clients, collaborators and cohorts.
This National Pain Week, The Hopkins Centre and Griffith Inclusive Futures: Reimagining Disability are inviting "painchangers', clinicians and pain researchers Dr Nicholas Aitcheson and Kim Talaber to host this Hopkins Hour, where they will share the latest research into the chronic pain experience, including strategies for management and the latest therapeutic models.
Dr Nick Aitcheson is a rehabilitation and pain medicine specialist at Metro South Health Pain Rehabilitation Service. He has a particular interest in spinal injury rehabilitation, social prescribing, and the management of polypharmacy. Nick's current areas of research are pressure injuries in spinal cord injury, chronic chest pain, social education groups for social integration, and low dose naltrexone in the treatment of chronic pain.
Kim Talaber, is a trained Physiotherapist and current PhD candidate with The Hopkins Centre and Griffith University. Her research investigates brain mechanisms to treat chronic neuropathic pain following spinal cord injury. Kim is completing her research with the Musculoskeletal Health & Persistent Pain Research Group, with support from a Seed Grant from The Hopkins Centre.
During the session, Dr Aitcheson and Ms Talaber will be joined by special guest and Inclusive Futures Engagement Council member, Mark Berridge, to explore how individual experiences of pain can be influenced by personal perceptions and beliefs.
Mark Berridge is an experienced business leader, TEDx speaker and multi-award-winning author. Mark’s extensive corporate expertise combined with the life changing lessons he gained overcoming a severe spinal injury provides a unique lens to inspire people and organisations to pursue their potential, undaunted by the uncertainty of their circumstances.
We hope you can join us for this fascinating discussion.
Head to our website to join this online event, live on Wednesday 24 July, 2024, at 12:30pm: https://lnkd.in/gBDvUKQm
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Disability Reform Summit: Moving from recommendations to evidence-based solutions
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The Disability Reform Summit was hosted by the Dignity Project and funded by an Engaging Science Grant from the Department of Environment and Science.
The Summit brought together a diverse group of citizen scientists, Queensland disability researchers and academics, and key disability persons and advocacy organisations for a collaborative agenda-setting workshop.
The workshop sought to co-create priorities for research based on the NDIS Review recommendations, Disability Royal Commission recommendations, and the Voice of Queenslanders with Disability report recommendations, while moving towards evidence-based solutions that will directly contribute to government and service responses.
Twenty-one attendees worked collaboratively over a 4-hour workshop and identified key priorities, much of which was focused on improving disability data collection, better implementation of consistent disability flags across mainstream services, and increasing sustainable long-term partnerships and funding.
Workshop attendees wanted to prioritise projects that focus on building evidence for knowledge and evidence gaps, although 50% of participants also wanted to examine existing interventions to evaluate and improve them.
L-R: Dr Kelsey Chapman; Dr Talitha Kingsmill and Sharon White; and Nerine Williams.TOPICS AND INSIGHTS
Health and Wellbeing:
- Promoting health consumerism principles and access for all.
- Shifting from reactive to pre-emptive health strategies.
- Addressing disparities in health equity and access.
- Campaigns like 'Hear Me, See Me, Understand Me' and involving lived experiences in decisions.
- Potential research includes integrating health awareness into education and enhancing professional understanding of diverse needs.
Employment and Financial Security:
- Psychological safety and accommodations in the workplace.
- Inclusive recruitment, onboarding, and raising employment expectations.
- Examining current inclusive policies and staff training in unconscious bias.
- Potential research includes building inclusive research teams and understanding confidence in disability-related conversations.
Top: Panelists Prof. Elizabeth Kendall AM, Dr Talitha Kingsmill, Sharon White and Prof. David Trembath. Bottom: Dr Kelsey Chapman leads the summit workshop activities. Inclusive Education and Learning:- Need for inclusive school rules and evolving educational practices.
- Redesigning assessment methods and promoting reasonable adjustments.
- Potential research focuses on leadership attitudes and diverse perspectives in education, reassessing student success metrics.
Inclusive and Accessible Communities:
- Evaluating compliance vs. actual accessibility and inclusion.
- Measuring community inclusion and the impact of co-design.
- Opportunities like Brisbane 2032 for updating infrastructure and promoting universal accessibility.
Disability Data:
- Enhancing researcher capability and implementing consistent disability data flags.
- Prioritising projects to build evidence and evaluate existing interventions.
- Balancing academic interest with immediate social needs through co-design and sustainable partnerships.
Top L-R: Sharon White and Prof. David Trembath; Julia Robertson.
Bottom L-R: Dr Eloise Hummell and Nerine Williams; Geoff Trappett; Dr Maretta Mann. We extend our gratitude to the Queensland Government Department of Environment and Science for their support of this research. Our deepest thanks also go to Dr. Kelsey Chapman, Lead Researcher, and the Griffith University's Inclusive Futures: Reimagining Disability team, including Rebekah Barker, Joe-Anne Kek-Pamenter, Dr. Maretta Mann, and Professor Elizabeth Kendall AM, for their invaluable assistance in organising this event. Additionally, we appreciate the continuous dedication and support of our Summit participants and the wider Dignity Project team.Special thanks to Eric Tram, our videographer, illustrators Holly Bryant & Cate Withers and the team at Griffith University Live Worm (Libbi Reed, Jacqui Hancox and Sharon Searle) for their engaging Sketch Notes that beautifully captured the topics and insights of the Summit.
Top L-R: Prof David Trembath; Dr Kelsey Chapman; Dr Eloise Hummell.
Bottom L-R: Summit Participants; Prof. Elizabeth Kendall AM.
Top L-R: Dr Talitha Kingsmill and Karin Swift.
Bottom: Dr Maretta Mann and Dr Kelsey Chapman lead discussion amongst their group.Acknowledgement
The Disability Reform Summit was funded by an Engaging Science Grant from the Queensland Department of Environment and Science and the Office of the Chief Scientist.
Watch the Disability Reform Summit highlights on YouTube: https://youtu.be/Wz2UJ08xOP0?si=xIu1T75BSAVJTm58 (Videographer: Eric Tram).
Join us in moving from recommendations to real change!
More information: Dr Kelsey Chapman, Research Fellow and Citizen Science Manager k.chapman@griffith.edu.au
SKETCH NOTES
For an accessible / alternate format of our sketch notes, please email inclusivefutures@griffith.edu.au
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Brain Awareness Week
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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/
