Empowering the survivors of serious trauma injuries requires the need to inform everyone affected by the incident – not only the patients, but also their families, carers, supporters and medical staff – and Flinders University’s Caring Futures Institute has addressed a new way to co-design support information that best supports everyone’s needs.

Professor Stacey George, Professor of Healthy Ageing Support and Care in the College of Nursing and Health Sciences, leads a team that has worked with the Lifetime Support Authority to build a new set of support resources built on innovative co-designed research.

“A serious trauma injury, such as a brain injury, spinal cord injury, or amputation, is a life- changing event. Often there is a lot of new information about diagnosis, recovery and life after the injury, and we want to make sure it’s easily and readily accessible to everyone who needs it,” says Professor George.

The call for better information resources came from clinicians in the Northern Adelaide Local Health Network rehabilitation area. “They are not a specialist area for serious trauma injuries and wanted to support the existing services for people with brain injury and spinal cord injury, especially once these people report for help at outpatient clinics,” says Professor George. “The clinicians felt they weren’t well set up to support these people, so they wanted resources that could be shared with this population of patients.”

The Flinders team’s solution was to create new co-designed information resources that meet up-to-date needs. The research project asked people who have survived trauma injury, their carers, supporters, families and health professionals who work with them (OT, PT, Speech pathologists, social workers and LSA planners) about what information is needed to help the recovery journey.

“They all wanted to explain what they needed – not just as patients, or as carers, but as people at the centre of this situation,” explains Saran Chamberlain, who is a Lived Experience Researcher for the project. “The help of family and friends is especially important to ensure long-term stability, yet these people hadn’t been included in previous conversations about appropriate care.

“So many felt they weren’t being heard, didn’t know how to obtain relevant information and didn’t know how to navigate the health system. They want to normalise the need for people in their position to get support – and they felt greatly relieved that we asked them to expand the conversation and learn what was needed.”

Five key areas were identified where resources can provide valuable assistance after serious trauma injuries: to map out a clear rehabilitation and recovery pathway; to prepare discharge plans from hospitals; to address grief and mental health; to help rebuild identity after injury; and to identify where peer and carer support can be obtained.

After drafts of both written and visual materials addressing these issues had been reviewed by the research project co-design group, videos were produced by Frankie Films and written materials prepared for publication.

To conclude this huge two-year project, all of the participants involved in the co-designed research project were invited to meet the team in March to view the completed videos, and Professor George says the event had an air of celebration.

“They all felt valued. They felt like the experts at the centre of this project, not people being told what was going to happen to them. It has set a model for co-designed support materials that can be used by so many others into the future.”

Saran Chamberlain says the new resources are valuable for their multiple perspectives –outlining some of the common questions to consider when patients are returning home, while also making suggestions for clinicians providing information to serious trauma injury survivors that helps them be an active participant in their recovery and life adjustment after the injury.

“These materials are so important – because there is no break for anyone involved in the ongoing efforts after a traumatic head injury,” she says.

The videos will be made public on a new Lifetime Support Authority website, which is planned to be made available by September.