To understand how we can support young men under 35 living with spinal cord injury to continue to lead their best lives, we first took a broad approach to explore why, and in what situations, do young men seek help, in general, before narrowing into the problem.
A spinal cord injury is a catastrophic, unexpected, life-changing condition that not only affects an injured person physically, but also all aspects of their life. Beyond their own emotional well-being and sense of identity, spinal cord injuries have significant impacts on an individual’s family, social networks, employment and education, and presents enormous system costs.
The challenge of living your best life is considerable, especially for young males. It involves the adjustment of many factors including individual attitudes, capacity and capability, and responsive community, health and other services. However, if this challenge can be met - even in part - it can reap enormous benefits to people with a spinal cord injury, those around them and the wider community.
Although contemporary thinking about health and disability care suggests that building capacity to self-manage is the optimal pathway to improving health, well-being, and participation outcomes. However, in considering this practically, specialist spinal cord injury health and community-based services are still continually faced with the challenge of ineffective engagement of young men living with such an injury.
We challenged health and social care practitioners to consider how they engage with young men living with a spinal cord injury. Engaging young men living with a spinal cord injury, in particular, comes with an array of unique challenges. However, through our research conducted during phases 1 and 2 (described below), we were able to highlight a number of considerations that could inform engagement of males under 35:
See page 25 of the full report for more information.
When engaging with young men living with a spinal cord injury, we found that building on “connection before content” was one of the most impactful insights in delivering better outcomes for these patients. “Connection before content” means considering the life journey of each individual and thinking about how we can adapt current practice or introduce new interventions that engage and equip these young men to thrive.
"Connection before content" came to be the most prominent theme in the co-design of our three trial interventions.
During our initial engagement for this project, our researchers and our partners wanted to understand a range of behaviours associated with men’s engagement in help-seeking behaviours in general. The aim of this exploration phase was to unpack the problem and develop a shared understanding of how to progress towards change.
Our evidence and practice reviews found a number of barriers and facilitators to engaging young men in help-seeking behaviours. Some of these barriers include stigma, lack of trust and knowledge gaps. Whereas, some facilitators include social/family/peer support, cultural appropriateness, trust in providers, and more. The reviews also found that masculinity could play a key role in health engagement, whether as a barrier or facilitator. There is less interest in activities that are perceived to be ‘non-masculine’.
A number of key themes were identified after discussions in our first stakeholder dialogue which focused on the current challenges of engaging young males with a spinal cord injury. These themes were split into three categories:
Our second stakeholder dialogue identified a number of themes in engaging young males with a spinal cord injury in relation to their health, wellbeing, social interactions and life directions. These themes include:
Despite decades of experience as a doctor in this area, it has provided new insights and changed our unit approach to working with individuals with spinal cord injury and hopefully the approaches of others as well - Andrew Nunn, Director of the Victorian Spinal Cord Service, Austin Health
In this phase of the project, we conducted deep dive interviews and facilitated co-design workshops to understand where we were going to focus our interventions. For our interviews, we spoke to people living with a spinal cord injury and key stakeholders in the system to understand the main drivers and barriers for men under 35 to optimise their health and lifestyles. Insights from these interviews, alongside insights we gathered from phase 1, informed the development of the interventions in the facilitated co-design workshops.
These interviews were to further understand the explicit drivers and barriers to the behaviours that had been identified as part of the stakeholder dialogues. This research activity provided the opportunity to connect with the target audience and understand from their perspective why they did or didn’t engage in elements of their healthcare
We found 5 key themes that emerged as influences that drive the behaviours of young men with a spinal cord injury to look after their health and wellbeing. These influences on behaviour include:
We facilitated 2 co-design workshops (i) to engage participants in the evidence and findings of the project, and (ii) draw on participants’ experience, insights and creativity to narrow down the behaviours we want to target.
These workshops led to phase 3: the development of 3 interventions. These interventions largely centred on “connection before content”, a key insight drawn from extensive research conducted in our phase 1 activities and deep-dive interviews.
As someone with a career long involvement working with people with a spinal cord injury, being involved in a project with other highly experienced clinicians… all of whom accepted the challenge of ‘Not Knowing’, entering dialogue and then co-design – this was a remarkable and highly valuable process that delivered lessons and insights throughout - Peter Trethewey, CEO of AQA Victoria
Dr Denise Goodwin, Co-Director, Health Programs, BehaviourWorks Australia
Alyse Lennox, Senior Research Officer, BehaviourWorks Australia
Peter Trethewey, CEO, AQA Victoria
Professor Andrew Nunn, Director, Victorian Spinal Cord Service, Austin Health
Dr Brea Kunstler, Research Fellow, BehaviourWorks Australia
Professor Peter Bragge, Director, Monash Sustainable Development Institute Evidence Review Service, BehaviourWorks Australia
Intervention 1: Immersive Skills Training
Intervention 2: Partnering for Success
Intervention 3: Community-Based Wheelchair Skills
