Fatigue is a major issue for stroke survivors, and many have said that it’s the worst symptom they experience after their stroke. Fatigue after stroke isn't related to previous effort levels and it's not improved by rest. Research has shown that between 25 and 85% of stroke survivors experience fatigue.
Fatigue can have a negative effect even on those who make a good physical recovery. It affects stroke survivors’ ability to engage with rehabilitation, quality of life (for example, through being too fatigued to take part in hobbies or spend time with friends and family), and is associated with increased mortality.
The last 10-15 years has seen a huge increase in the amount of research being carried out into fatigue after stroke. However progress in the management of fatigue has been slow and there’s still very little evidence about how best to treat fatigue after stroke. Fatigue has been identified as a priority for stroke research by both people affected by stroke and healthcare professionals.
This research aims to create a fatigue management programme that can support stroke survivors living at home to self-manage their fatigue. Fatigue after stroke can present in different ways in different people, for example some may struggle physically while others will have problems with thinking and memory, and some may experience both. The fatigue management programme will be created to be flexible to people’s individual needs.
In order to create the programme the research team will draw on the knowledge and experience of experts in fatigue – stroke survivors, carers, and professionals working in fatigue services.
The research will happen in three stages:
1. The research team will review the fatigue services that current exist in the UK, both general and for specific conditions (e.g. Multiple Sclerosis). They’ll look at the characteristics of the programmes and the content of the programmes they offer. This will allow the research team to learn from services that already exist and bring this to their stroke specific programme.
2. The researchers will interview stroke survivors, carers and clinicians, and hold two focus groups with stroke survivors with fatigue. They’ll ask about their experience of fatigue, what helps fatigue or makes it worse, and strategies they’ve used that have and haven’t worked to help manage fatigue.
3. Finally, they’ll use the information from stages one and two of the research to co-produce the fatigue management programme with stroke survivors with fatigue, their families and professionals.
This project will create a fatigue management programme that has drawn on the needs and the knowledge of both stroke survivor and professional experts in fatigue.
Before this programme could be used in practice to help stroke survivors with fatigue to manage their condition it will need to be tested in a larger research study. Once they have created the programme the research team plan to test the programme to see if it works (i.e. does it help stroke survivors with fatigue).
They’ll also investigate whether or not it would be cost effective for the NHS to offer the programme, for example whether it could reduce the number of GP appointments stroke survivors make to discuss fatigue, therefore saving money.