New Research Project to Help People with Brain Injury Speak Up and Navigate Their Care

The Hopkins Centre is proud to congratulate Prof Timothy Geraghty (Principal Investigator) and The Hopkins Centre research team on being awarded a Metro South Health Research Support Scheme (SERTA) grant for their new project focused on supporting people with acquired brain injury (ABI).

 

The project, titled “Facilitating choice and agency when cognition is compromised: Enhancing self-advocacy skills for system navigation for people with acquired brain injury”, aims to help people with brain injury better understand, manage and speak up about their healthcare.

 

An acquired brain injury can happen suddenly due to stroke, trauma, infection or other causes. In Australia, around 1.7 million people live with disability related to ABI. Many experience challenges with memory, communication, planning and emotional regulation. These difficulties can make it incredibly hard to navigate complex health and disability systems, especially during the transition from hospital to home.

 

Research shows that people with brain injury often move between multiple services in their first year after discharge, with many requiring emergency care. These transitions can be overwhelming for individuals and families.

 

This new SERTA-funded study will formally test an innovative program called MYSAY (MY Self-AdvocacY). The program is designed to support people with ABI to rebuild their confidence and skills to:

• Understand their injury and rehabilitation goals
• Know their rights and available services
• Communicate their needs clearly
• Make informed decisions about their care
• Navigate health and disability systems more effectively
   

MYSAY includes personalised support sessions delivered over six months, beginning in hospital and continuing into the community. Participants create a tailored tool, using paper or digital formats, that helps them organise important information, track their progress and share relevant details with family members and healthcare teams.

The program has been co-designed with people with lived experience of brain injury, family members and clinicians through Metro South Health’s Brain Injury Rehabilitation Service. Early testing has shown promising results, with participants reporting more confidence in having a greater say about their care and directing their rehabilitation.

 

This new grant will allow the research team to conduct a pilot randomised controlled trial to evaluate how feasible, acceptable and effective the MYSAY program is compared to usual care. The findings will inform future large-scale research and the development of practical resources for families and clinicians.

 

By supporting people with brain injury to have a stronger voice in their care, this project aims to improve health outcomes, reduce unnecessary service use, and create more responsive and person-centred healthcare systems.

 

Congratulations to Professor Geraghty and the research team on this important and impactful grant award. The Hopkins Centre looks forward to sharing updates as the project progresses.