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Leading your best life

Leading your best life

The challenge of leading your best life after something as traumatic as spinal cord injury (SCI) is especially difficult.  A SCI is a catastrophic, unexpected, life-changing condition that not only affects the injured person physically, but also impacts on all elements of their life including their family, employment, social networks, and sense of identity. For men under 35, who represent a large cohort of acute SCI presentations, the challenges are many and complex.

From the time of their injury, this cohort will also be challenged physically, emotionally and psychologically by aspects of their impairment and related health complications.  

The Transport Accident Commission (TAC) are funding a major research study into how to engage with these men living with SCI so that they can lead their best life. This involves the adjustment of many factors including individual attitudes, capacity and capability, and responsive community, health and other services.  

The evidence so far is – they can, but a number of challenges have to be overcome.

A team effort

The project Team – a collaboration between BWA, Austin Health and AQA – has completed Phase 1 of the study which explored how to best engage with males under the age of 35 years (not limited to those with SCI), to help inject new thinking into how to enable males under 35 with SCI to manage their health and thrive.  The results of this phase (an evidence and practice review, plus two rounds of stakeholder dialogue) point to a need for genuine engagement with these men.  As lead author of the report, Denise Goodwin, explains; “It’s about meeting people where they’re at, getting to really know them.  According to the stakeholders we spoke to, it can be hard to engage men, but easy to maintain the connection once it’s established.”  

The dramatic impact SCI has on younger men and their sense of masculinity is a key feature of this research; it can be both a barrier and facilitator.  Re-framing help-seeking as ‘something blokes do’ can promote engagement, along with overcoming stigma, knowledge gaps and lack of trust.  Many men withdraw from social contact, even with their families, and building enough trust to reconnect can be a delicate task.  Keeping forums free of judgement and away from clinical settings, coming up with interventions that are co-designed and not imposed, leveraging existing networks and realising that every conversation is a ‘little in’ – a window of opportunity to engage – are all important learnings.  

Research is exploration

To some extent, TAC took a leap of faith in the project, exploring the whole area of men’s health without having to strictly define the research.  The project team have taken the opportunity to apply the BWA method in full and are now looking to co-design some interventions in Phase 2.  

Following on from BWA’s bladder management research, the findings from this study are helping to build more knowledge of not only this cohort, but potentially other trauma populations.  As the body of research grows, there is an opportunity to adapt different approaches for different groups, and hopefully help change the narrative and get more people back into leading their best life.

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