Introduction: The Young Stroke Service (YSS) addresses the unique needs of young adults with stroke. Principles of supported communication and accessibility underpin YSS activities. The Lived Experience Contributor (LEC) group is central to the YSS, extending the diversity of lived experience within the project team. The aim of this presentation is to outline the LEC group formation and the importance of lived experience contributions.
Methods: Establishment of the LEC group was fundamental for the YSS translational mixed-methods, longitudinal research program. Partnering with Stroke Foundation, we sought diverse representation of people with stroke aged 18-55 and carers.
Key steps included:
1) Distributing expressions of interest.
2) Tailored introductory discussions and onboarding to meet communication and accessibility needs.
3) Surveying LEC members about their experiences.
Results: A 16-member LEC group, including people with cognitive and communication difficulties was established (F: n=8, <45 years: n=11, <3 years post-stroke: n=10, carers: n=2), and individualised onboarding undertaken. The LEC group has contributed to many initiatives, ensuring prioritisation of stakeholder needs. Survey feedback revealed LEC members feel valued and supported but desired more feedback about initiative outcomes. Efforts continue to enhance LEC diversity, particularly to include First Nations people and young adults in residential care. A guide is being developed to document the establishment process, including communication support, and lessons learned.
Conclusion: The formation of the LEC group marks a shift towards co-design in stroke services, highlighting the transformative impact of lived experience. Steps taken to establish the group were endorsed by LEC members and will form a guide for future stroke initiatives.
Relevance to clinical practice or patient experience:
1) Inclusion of people with Lived Experience is critical in stroke service design.
2) The LEC group has a key role in assisting to make services accessible and tailored to the needs of young stroke survivors.