Facilitating Choice and Agency When Cognition is Compromised: Enhancing Self-Advocacy Skills for System Navigation for People with Acquired Brain Injury

About the Project

Principal Investigator: Prof Timothy Geraghty, Director, The Hopkins Centre

People/organisations involved:

Prof Tamara Ownsworth, The Hopkins Centre, Griffith University

Dr Jessie Mitchell, The Hopkins Centre, Griffith University

Dr Kerrin Watter, Acquired Brain Injury Outreach Service, Metro South Health

Dr Melissa Kendall, Acquired Brain Injury Outreach Service, Metro South Health

Areti Kennedy, Acquired Brain Injury Outreach Service, Metro South Health

Dr Annerley Bates, Brain Injury Rehabilitation Service, Metro South Health

Dr Ryan Bell, Metro South Health

Dr Mandy Nielson, Acquired Brain Injury Transitional Rehabilitation Service, Metro South Health

Dr Kelsey Chapman, The Hopkins Centre, Griffith University

Karen Hannah, Consumer Advocate

David Curry, Consumer Self-Advocate

Dr Rachel Brough, The Hopkins Centre, Griffith University

Janelle Griffin, Metro South Health

Val Pick, Metro South Health

Courtney Carlson, Metro South Health

Clare Morgan, Acquired Brain Injury Outreach Service, Metro South Health

Sue Wright, Metro South Health

This project, 'Facilitating Choice and Agency When Cognition is Compromised: Enhancing Self-Advocacy Skills for System Navigation for People with Acquired Brain Injury', aims to strengthen self-advocacy skills for people with acquired brain injury (ABI). By improving the ability to navigate complex health and community systems, the project seeks to enhance autonomy and support better long-term outcomes.

Aim and Objectives

This project aims to evaluate MYSAY (MY Self-AdvocacY), an innovative program designed to help people with acquired brain injury (ABI) rebuild confidence and skills to actively participate in their care. After brain injury, challenges with memory, communication, planning and emotional regulation can make it difficult to understand care options, express needs, and navigate complex health and disability systems, particularly during the transition from hospital to home.

The study will assess whether MYSAY is practical, acceptable and effective when delivered as part of rehabilitation services.

The key objectives are to:

• Determine whether the MYSAY program is feasible to deliver within existing rehabilitation services
• Assess whether participants and families find the program useful, relevant and acceptable
• Examine whether MYSAY improves:
  • Self-advocacy skills (confidence and ability to speak up about care)
  • Self-management skills
  • Self-awareness
  • Mood and emotional wellbeing
  • Ability to overcome service and system barriers
• Compare outcomes for participants receiving MYSAY with those receiving usual care.

The project will use a pilot randomised controlled trial to formally test the program and inform future large-scale research.

Expected Outcomes and Impact

This project is expected to deliver a practical, evidence-informed intervention that can be integrated into brain injury rehabilitation services. By introducing structured self-advocacy support early and continuing it into the community, MYSAY aims to strengthen people’s ability to direct their care and make informed decisions.

Improved self-advocacy and system navigation skills have the potential to:

• Support smoother transitions from hospital to home
• Enhance person-centred care and shared decision-making
• Reduce unnecessary service use and avoidable hospital readmissions
• Improve long-term health and wellbeing outcomes

The project will also produce tangible resources, including a “how-to” guide for people with ABI and families, and a clinician training manual to support implementation. Findings will inform a future large-scale trial examining long-term effectiveness and cost-efficiency.

Project Status and Timeframe

The project will run from January 2026 to December 2027. The first phase will focus on ethics and governance approvals, followed by participant recruitment through Metro South Health’s Brain Injury Rehabilitation Service, including the Princess Alexandra Hospital Brain Injury Rehabilitation Unit and the Jasmine ABI Slow to Recover Unit.

Participants will complete the six-month intervention (or usual care comparison), with assessments at baseline, three months and six months. The final stage will involve analysis, reporting and sharing findings with clinicians, consumers and the broader research community.

Project funded by the 2026 Metro South Health Research Support Scheme, MSH SERTA