Exploring experiences of people with stroke and health professionals on post-stroke fatigue guidance: getting the right people to the right care at the right time

Purpose: This focus group study aimed to explore experiences and perceptions on post-stroke fatigue guidance in Dutch rehabilitation and follow-up care among people/patients with stroke and health professionals. Methods: Ten persons with stroke and twelve health professionals with different professions within stroke rehabilitation or follow-up care in the Netherlands were purposively sampled and included. Eight online focus group interviews were conducted. We analysed the data using reflexive thematic analysis. Results: Three themes were identified. Guidance in fatigue management did not always match the needs of people/patients with stroke. Professionals were positive about the provided fatigue guidance (e.g. advice on activity pacing), but found it could be better tailored to the situation of people/patients with stroke. Professionals believe the right time for post-stroke fatigue guidance is when people/patients with stroke are motivated to change physical activity behaviour to manage fatigue–mostly several months after stroke–while people/patients with stroke preferred information on post-stroke fatigue well before discharge. Follow-up care and suggestions for improvement described that follow-up support after rehabilitation by a stroke coach is not implemented nationwide, while people/patients with stroke and professionals expressed a need for it. Conclusions: The study findings will help guide improvement of fatigue guidance in stroke rehabilitation programmes and stroke follow-up care aiming to improve physical activity, functioning, participation, and health.