Background
Fatigue is a common and debilitating symptom which affects over 50% of stroke survivors and which presents a significant challenge to recovery. However, existing evidence on how to best manage it is limited, many guidelines fail to include the experiences and strategies of those with lived experiences in making recommendations.
Aims
Our aim was to use codesign methodology to develop a fatigue management programme that could be tailored to the unique needs of stroke survivors in managing their fatigue.
Methods
A series of codesign groups were convened to develop online resources and a workbook to aid a wider understanding of the impact of post-stroke fatigue and self-management strategies. We wanted to recruit those with lived experience, carers and clinicians.
Results
We recruited a diverse group of 23 participants.; 16 stroke survivors with post-stroke fatigue, 2 informal caregivers, and 5 healthcare professionals with expertise in fatigue management, 2 of whom also lived with fatigue as a part of a long-term health condition.
The codesign groups informed the development of online resources and a workbook. These include information on how post-stroke fatigue may impact a person, what it can feel like, and potential strategies for self-management.
Conclusion
The content and priorities were informed by the experiences of the group. The range of successful strategies discussed enriched the understanding of how varied the intervention would need to be i.e. not one size fits all. The resources will now be tested in a feasibility trial in a later phase of this study.