Using co-design in managing post-stroke fatigue: Nottingham Fatigue after Stroke Study (NotFAST2)
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AbstractIntroduction: Post stroke fatigue (PSF) is an overwhelming feeling of exhaustion, which is not related to exertion, and which does not typically improve with rest. It affects approximately 50% of stroke survivors. Our aim was to provide participants with an opportunity to discuss their experiences of PSF, to talk about strategies which were thought important and to suggest how a fatigue programme could be best delivered.
Method(s): We recruited - people with PSF. - family/ friends who provided support. - healthcare professionals with expertise in fatigue A maximum variation sampling strategy was used to ensure a broad range of participants and experiences. Five two-hour co-design groups were held using Microsoft Teams.
Result(s): 35 participants took part over 16 weeks from across the UK. This included twelve stroke survivors, two with aphasia. Key points identified were: - Healthcare professionals often do not fully understand fatigue and often avoid talking about it. - Contact with both professionals and others with fatigue is very much valued. - Those with lived experience did not appreciate much of the language used by professions. Red flag words include normal, recovery, tired. - A 'pick and mix' option of strategies to manage fatigue was thought ideal to cater for individual needs - One participant said 'Thank goodness someone is listening'
Conclusion(s): The co-design groups allowed people to exchange experiences and perceptions in a safe space. There was mutual respect for different viewpoints and the sessions facilitated insights from the different parties. The use and input of ALL experts is critical in moving this area forwards.