Patient experience and roles within YARNS, the PPI group input

The YARNS project recruited an advisory PPI group of service users who provided essential advice on the development of the project and acted as critical friends by providing representation and feedback on all aspects of the study. Seven service users were recruited from across the UK. Consultation was through online meetings to comment on and validate the findings of the scoping review and interpretation of the identified stories. Initial results were sent by video for the group to watch and reflect on how the results resonated with their experiences. Some of the volunteers experienced aphasia and other cognitive impairments, therefore, digital resources were used to facilitate their participation.They identified additional information that had not been captured or missed and so revising the interpretation of the project outcomes.Key observations that they made from their experience and expertise of stroke were: The small number of young adults in the overall group with stroke admitted into acute care; the issue of young adults’ invisible disability post stroke; the importance of stroke rehabilitation for returning to work; the need for support and understanding from employers; and that younger people tend to have higher and different goals to those set by stroke rehabilitation programmes. The advisory group are contributing to the ongoing research, advising on the best ways to support young people to tell their story through the development of a story passport or template. They are supporting further research developments becoming co-applicants on a grant proposal and co-researchers in this funding. This level of input and insight was essential to ground the project in the reality experienced by young people following stroke.