Story by Michael Morariarty, Coordinator for the Living Your Best Life project.
Men under 35 are overrepresented in the SCI community, and they are often not well equipped to seek or accept support. In recognition of these facts, the Victorian Transport Accident Commission (TAC) has commissioned a project called Living Your Best Life.
The project aims to support young men who have suffered traumatic spinal cord injury in managing their health and wellbeing, beyond outpatient rehabilitation.
The project is being delivered by three project partners: AQA, Austin Hospital Spinal Unit and Monash University Behaviour Works. It commenced in January 2020 and is due to finish later this year.
Central to the project – and the design of the intervention – is participation and input from those with lived experience of SCI.
Phase 1 of the project, which collated information from research, health professionals and men living with SCI, has uncovered some key barriers and key facilitators to making optimal decisions on health and wellbeing, as well as suggestions for interventions in the community.
- Perceived norms of masculinity
- Lack of knowledge
- Financial barriers
- Social and/or family support
- Treatment with a focus on good interpersonal communication
Suggestions for interventions in the community:
- Take an ‘opt out’ rather than ‘opt in’ approach to providing support, without being pushy.
- Move away from clinical settings and medical perceptions.
- Use male role models or mentors to reverse negative norms of masculinity (eg. takes courage to seek support).
- Initial focus on connection over content.
- Avoid ‘one-size-fits-all’ approaches.
- Mitigate society’s low expectations of those with disabilities.
- Foster the desire for independence and ownership of activities.
- Timeliness of personalised information provision.
- Facilitate skills development & overcoming challenges.
Phase 2 of the project is now commencing, which is the co-designing of one or more suitable interventions with men living with SCI and health professionals. The final phase will be piloting the intervention/s and evaluating the outcomes.
The project partners, myself included, are thankful that the TAC was willing to fund this project when the intervention hadn’t been preconceived but instead will grow out of a co-design process involving lived experience.
AQA plays an important role in the project by encouraging and supporting people who have that lived experience to participate in the project. This is crucial in the current phase, as the design of an effective intervention is more likely with input from those with lived experience.
I have enjoyed working with this project, where all involved show genuine excitement at the prospect of an innovative approach to supporting young men to optimise their wellbeing and live their best life. I am now moving on from AQA, but I’ll be keen to hear how the project progresses.
- March 7, 2022