Lightning Oral Presentation Australian and New Zealand Stroke Organisation Conference 2026

The future of aphasia support: what can we learn from sustainable community-driven initiatives?  (139675)

Megan Trebilcock 1 , Julia Proud 2 , Anna Volkmer 3 , Emma Power 4
  1. The University of Sydney, Camperdown, NSW, Australia
  2. Lived experience expert, Sydney, Australia
  3. University College London, London, UK
  4. University of Technology Sydney, Ultimo, Australia

Background 

Individuals with aphasia often require the greatest level of support to engage in advocacy, service development, and re-design (Prior et al., 2020).  There are, however, existing community-driven models that have been successfully sustained and evolved over time. It is therefore critical to understand how these initiatives sustain themselves and adapt over time, and what mechanisms enable their success

Methods 

A mixed methods approach utilises focus groups with community service representatives from Sydney, Australia, to establish project duration and the factors influencing sustainability. A content analysis, informed by the Practical, Robust Implementation and Sustainability Model (PRISM) (Glasgow et al., 2024), guides a thorough exploration of these factors and the future establishment of a model for developing inclusive and sustainable community programs. 

Results 

Focus groups are scheduled for May 2026 and include representatives from a wide range of community services such as family support and technology inclusion. Understanding the mechanisms that enable these initiatives to endure, such as how power is shared, decisions are made, and capacity is built, represents a critical opportunity to strengthen future community-driven programs. 

Conclusion 

Most aphasia implementation research captures only a single cycle of delivery, offering limited insight into whether outcomes are maintained or adapted over time (Power et al., 2020). This project addresses this gap by examining the long-term enablers and barriers to sustainability in community-driven programs. The enabling features will be combined with principles of inclusion, to provide a roadmap which facilitates engagement of people with communication disability in future program development.

  1. Glasgow, R. E., Trinkley, K. E., Ford, B., & Rabin, B. A. (2024). The Application and Evolution of the Practical, Robust Implementation and Sustainability Model (PRISM): History and Innovations. Global Implementation Research and Applications, 4(4), 404–420. https://doi.org/10.1007/s43477-024-00134-6
  2. Power, E., Bryant, L., & Shrubsole, K. (2020). Making aphasia implementation stick: ensuring the sustainability of implementation. Speech, Language and Hearing, 23(1), 25–29. https://doi.org/10.1080/2050571X.2019.1707349
  3. Prior, S., Miller, A., Campbell, S., Linegar, K., & Peterson, G. (2020). The challenges of including patients with aphasia in qualitative research for health service redesign: Qualitative interview study. Journal of Participatory Medicine, 12(1), e12336–e12336. https://doi.org/10.2196/12336