We reviewed research into treatments for disorders of perception after stroke. These disorders reduce a person's ability to recognise and understand information from their senses. We involved people affected, to ensure that (i) their experiences were reflected and (ii) this complex topic was treated in a clear and understandable way. This paper discusses their involvement, the impact it had, and the lessons learnt. We involved five people affected, within a dedicated 'Lived Experience Group'. Two members were stroke survivors, while three were carers. Their activities spanned the whole duration of the project. An initial face - to - face meeting with the entire research team was followed by six online activities (because of COVID - 19 related restrictions) and email communication. The Lived Experience Group had a clear impact on the review. This included creating clear definitions of key terms, selecting which tests of treatment effectiveness were most important, determining the real - world meaning of the review findings, and agreeing the recommendations for stroke survivors, clinicians and researchers based on these findings. Key challenges were the complexity of the topic and terminology, the difficulty of using new technology, and the loss of personal connections arising from this mode of working. This study demonstrates how online involvement can successfully engage stroke survivors in research. It also suggests strategies to improve future work, such as providing time and support to both practice new technologies, and for social engagement.
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We reviewed research into treatments for disorders of perception after stroke. These disorders reduce a person's ability to recognise and understand information from their senses. We involved people affected, to ensure that (i) their experiences were reflected and (ii) this...
[more]