5 September 2023

Researchers from Monash University’s BehaviourWorks Australia, in partnership with Austin Health, Australian Quadriplegic Association (AQA) and the Victorian Transport Accident Commission, have concluded a three-year project which looked at optimising the wellbeing of young men, aged 35 and under, living with spinal cord injury (SCI).

Men under 35 years old are over-represented in the number of people experiencing acute spinal cord injury, are less likely to engage with health care services, and may have a tendency to “switch off” when faced with a deluge of information.

BehaviourWorks Australia Co-Director of Health & Social Programs, and one of the report authors, Dr Denise Goodwin, said the purpose of the report is to challenge healthcare practitioners and industry to review how the health and social care system can better engage with young men living with spinal cord injury.

“Australia’s healthcare system is not optimised for some groups living with spinal cord injury, particularly young men who represent a larger proportion of the spinal cord injury population, but are also more likely to disengage from a system that is not resonating with their needs,” said Dr Goodwin.

“Our hope is that the report findings will pave the way for change and, ultimately, provide both health and social care professionals and patients with the tools required to successfully navigate the complex range of challenges that come along with living with spinal cord injury.”

The project team implemented a ‘connection before content’ approach, with a focus on program participants being able to meet and interact with people where they are at, who understand their experience and who can offer relevant and truly meaningful information.

Two key interventions were designed to achieve this

1. Immersive communication skills training
2. Pairing allied health clinicians and people with lived experience of spinal cord injury to co-facilitate therapy sessions in the rehab setting.

Of the health and social care professionals involved in immersive communication skills training, all respondents said they would recommend the initiative to their colleagues, and 78 per cent had implemented lessons from the intervention into their work life one month later.

In order to establish and implement relevant and effective interventions, the research team first focused their efforts on understanding the cohort, their behaviours, challenges and opportunities.

Professor Andrew Nunn, Director of the Victorian Spinal Cord Service at Austin Health and report co-author, said taking a deep dive into the individual views and experiences of those living with spinal cord injury revealed the 'elephant in the room': the major determinant of outcome is how individuals deal with issues throughout rehabilitation and more importantly, in the community.

“Throughout these early stages of the project a range of stakeholders, together with those living with spinal cord injury, worked together to better understand what it’s really like being a young man living with spinal cord injury,” said Professor Nunn.

“Despite decades of experience as a doctor in this area, the process has provided new insights and changed our unit approach to working with individuals with spinal cord injury – we hope these changes will be far-reaching across the system.”

BehaviourWorks Australia Senior Research Officer and report co-author Alyse Lennox said a key finding of the study is the importance of connecting people with lived experience of spinal cord injury.

“There is currently a lack of people living with spinal cord injury working in the hospital and rehabilitation settings, which limits opportunities for newly injured individuals to understand what might be possible in the future. Participants reported that it can be difficult to relate to able-bodied professionals who are trying to model skills or provide support, and noted the difference it made when advice and information was delivered from those they could relate to,” said Ms Lennox.

Peter Trethewey, CEO of AQA Victoria and report co-author said readiness for life skills development often doesn't fit within the hospital recovery timelines and there are currently a lack of funded opportunities for skills development outside of these timelines.

“There is a need to acknowledge that people living with spinal cord injury are on a journey and, as such, our support systems must provide opportunities for the development of skills when people are ready to engage in the community. It has been heartening to see our research partners implement some of the approaches we trialled – and to see young men living with spinal cord injury respond so positively,” said Mr Trethewey.

“In many ways the project is a start, but a start that has shifted the dial on some practical approaches to joining a person on their journey that now includes the challenges of spinal cord injury in order to more effectively support them to meet those challenges.”

‍Read the full report.