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.

ABSTRACT

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.

We recommend fatigue guidance, including peer support, to be accessible to all people after stroke and for health professionals to pay attention to acceptance of the stroke.To improve fatigue guidance, we suggest providing information on post-stroke fatigue to people after stroke and their relatives well before discharge from stroke rehabilitation.Tailored advice on activity pacing during and after stroke rehabilitation is important to fill the current unmet need of people after stroke to manage fatigue and to gradually improve participation, physical activity behaviour and health.We recommend to health professionals working in stroke rehabilitation to tailor the rehabilitation schedule to their patients' energy level and perception of fatigue levels.