Platform Presentation The Joint Annual Meeting of the Stroke Society of Australasia (SSA) and Smartstrokes 2023

What are the Highest Priority Challenges for People with Communication Disability after Discharge? (#44)

John E Pierce 1 2 , Nelson Hernandez 1 2 , Damminda Alahakoon 2 , Achini Adikari 2 , Nuwan Pallewela 2 , Tracy Sheldrick 3 , Annie J Hill 1 4 5 , Brooke Ryan 1 6 , Dana Wong 1 7 , David Copland 1 4 5 , Emma Power 1 8 , Ian Kneebone 1 8 , Leanne Togher 1 9 , Tim Usherwood 1 9 , Ciara Shiggins 1 4 5 , Dominique Cadilhac 1 10 , Kelvin Hill 11 , Leonid Churilov 1 12 , Linda Worrall 1 4 , Lucette Lanyon 1 7 , Michelle Attard 1 , Rachael Rietdijk 1 9 , Richard I Lindley 1 9 , Miranda L Rose 1 7
  1. Centre of Research Excellence in Aphasia Rehabilitation and Recovery, Australia
  2. La Trobe University, Bundoora, VIC, Australia
  3. Speech Pathology, Bendigo Health, Bendigo, VIC, Australia
  4. Queensland Aphasia Research Centre, The University of Queensland, Herston, QLD, Australia
  5. Surgical Treatment and Rehabilitation Service (STARS) Education and Research Alliance, The University of Queensland and Metro North Health, Herston, QLD, Australia
  6. Curtin University, Bentley, WA, Australia
  7. La Trobe University, Langwarrin, VIC, Australia
  8. University of Technology Sydney, Ultimo, NSW
  9. The University of Sydney, Camperdown, NSW
  10. Monash University, Clayton, VIC
  11. Stroke Foundation, Melbourne, VIC
  12. The University of Melbourne, Parkville, VIC

Background: More than 140,000 Australians live with communication disability resulting from stroke. This group is particularly susceptible to mental health issues, social isolation, and poor health outcomes. Communication Connect is an NHMRC-funded project that is co-designing and developing a comprehensive and technology-enabled multidisciplinary programme of post-discharge care together with people with lived experience of communication disability, caregivers and clinicians.

Aims: The objective of phase one of Communication Connect is to identify the most significant short- and long-term challenges following discharge, as raised by people with communication disability, their caregivers and healthcare professionals. In phase two, solutions to these challenges are co-designed.

Methods: An Experience Based Co-Design method, adapted to be communicatively accessible, was utilised to understand and prioritise challenges faced by consumers (n=6), caregivers (n=3) and healthcare professionals (n=12) at two sites (rural Victoria and metro Queensland). Collaborative teams are developing solutions to the highest priority challenges.

Results: From 30 challenges, ten were voted by consumers and healthcare staff as highest priority for the solution development phase: (1) Lack of person-centred timing, duration, and delivery of services; (2) Services are difficult to access and navigate; (3) Loss of identity; (4) Lack of advocates to effectively manage care; (5) Carers need information and support; (6) Impact on family, parenting, and income; (7) Poor use of resources to enable communication; (8) Mental health and wellbeing; (9) Barriers to utilising technology; (10) Limited options in rural areas.

Conclusion: People with communication disability and their caregivers face a large range of challenges in adjusting to life after stroke. Communication Connect is purposefully working with consumers and healthcare staff to maximise the probability of successful implementation of co-designed solutions. The co-designed solutions to these challenges will be described, including an AI-enabled, aphasia-friendly web app that guides users to solutions and provides accessible mood monitoring.