Introduction: Post-stroke aphasia (language impairment) has a devastating impact on quality of life and people with aphasia (PWA) experience long-term unmet needs across the care continuum. A shared understanding of the experiences underpinning unmet needs is required to identify areas for improvement. Establishing priorities for meaningful and sustainable service improvement requires involvement of both service users and providers. Therefore, this research aimed to: 1)-collaboratively identify priorities for aphasia service improvement according to PWA, their significant others (SO), and speech pathologists (SP), and 2)-co-design a concept design for service improvement.
Methods: Experience-based co-design. Surveys were used to prioritise ideas (n=773) for improving aphasia services. Three multi-stakeholder consensus meetings were held to determine top priorities. A concept design was co-developed for the top priority during three consecutive co-design workshops.
Results: PWA (n=41), SO (n=35) and SP (n=75) across 26 health and hospital sites in remote, regional, and metropolitan Queensland, Australia contributed. Consensus was established on 7 priorities: 1)-chart alert system for aphasia, 2)-healthcare provider training in ways to support communication, 3)-tailored care for individuals, 4)-consistent care, 5)-equitable access to healthcare, 6)-intensive communication therapy options, 7)-mental health service options. A concept design was created for the top priority: a chart alert system to increase awareness of the presence of aphasia prior to care delivery.
Conclusion: This research highlights the increased risk PWA face in hospitals. Multi-stakeholder consensus was gained on seven priorities. Notably, PWA ranked communicatively accessible/engaging hospital environment improvements high than: mental health services, self-management approaches, preparing for home, or accessible education materials. Future research planned by team, will co-design, implement, and evaluate service improvements targeting identified priorities.
Relevance to clinical practice or patient experience: Development, implementation, and evaluation of the co-designed concept plan (chart alert system) may decrease miscommunication in hospital settings and enhance experiences of PWA communicating with healthcare providers.