Coproduction and evaluation of a self-management intervention for post-stroke fatigue
Many people experience severe tiredness, known as fatigue, after having a stroke or mini-stroke (TIA). This exhaustion can make everyday life, work, and relationships challenging, yet there is currently very little support available. The 'Rethink Fatigue' study is looking at a new online self-management programme designed jointly by stroke survivors, researchers, and healthcare professionals. The study aims to see how practical and helpful the app-based programme is to use. Adults who had a stroke between 6 and 24 months ago and struggle with daily fatigue can take part. Over six weeks, participants will complete six online sessions, followed by a 30-minute review with a healthcare professional. Questionnaires will be completed at the start and after three months. This study will help researchers decide if a larger trial should run to improve fatigue support for stroke survivors across the UK.
At a glance
What is this study about?
Experiencing severe tiredness after a stroke or mini-stroke (also known as a TIA) is very common. Many stroke survivors say this deep exhaustion, called post-stroke fatigue, is one of the hardest parts of recovery. It is not ordinary tiredness that gets better after a good night's sleep. Instead, it can make simple daily tasks feel overwhelming and affect mood, hobbies, work, and family life.
Even though fatigue affects so many people, there is currently little standard support or advice offered on the NHS. To help tackle this problem, researchers, doctors, and stroke survivors worked together to create an online support programme called 'Rethink Fatigue'. It is designed to teach practical ways to understand and manage energy levels.
This study is a small test run (a feasibility study) to see whether the digital programme is easy to use and acceptable to patients. The findings will help researchers improve the programme and decide whether to run a larger, UK-wide trial in the future.
Key takeaways
- Tests a new online programme called 'Rethink Fatigue' to help manage post-stroke exhaustion.
- Open to adults who had a stroke or mini-stroke between 6 and 24 months ago.
- Involves six weekly online sessions and one 30-minute healthcare appointment.
- Very low risk, with no new medicines, blood tests, or hospital stays needed.
- Helps researchers decide if a larger UK-wide trial should be offered to stroke survivors.
Who may be eligible?
This study is open to adults aged 18 and over who had a stroke or mini-stroke between 6 and 24 months ago. You must be experiencing ongoing tiredness that impacts your daily life and feel that you would like extra help to manage it. You also need to understand English and live in an area where the study is running (across the West Midlands).
You will not be able to take part if you have already completed a formal fatigue course or programme in the past 12 months. People who have a diagnosis of dementia or are receiving palliative care are also unable to join this study.
Could this study suit you?
Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.
- I am aged 18 or older.
- I had a stroke or mini-stroke (TIA) between 6 and 24 months ago.
- I feel tired all the time or get tired very quickly, and I want support for this.
- I live in the study area (West Midlands) and understand English.
- I have not attended a formal fatigue course or programme in the last 12 months.
- I do not have a diagnosis of dementia and am not receiving end-of-life (palliative) care.
What does participation involve?
Taking part lasts around three months in total and does not involve any medicines or hospital admissions. First, you will complete an agreement form and a questionnaire about your health and energy levels. You will then get access to the 'Rethink Fatigue' online programme, which contains six sessions designed to be completed over six weeks at your own pace. You will receive reminders and technical support if needed. Around 8 to 10 weeks after starting, you will have a 30-minute appointment with a trained healthcare professional, either in person, over the phone, or by video call. Finally, at three months, you will fill out a short questionnaire about your fatigue and your experience with the app. A few participants may also be invited to a friendly interview to share their feedback.
Potential risks and benefits
Locations (3)
- Birmingham Community Healthcare NHS Foundation TrustCity onlyBirmingham, England
- The Royal Wolverhampton NHS TrustCity onlyWolverhampton, England
- West Midlands RRDNCity onlyWolverhampton, England
Common questions
Do I need to take any new medications?
No. The study does not test any drugs. It only involves using an online learning programme and speaking with a healthcare professional.
Do I have to travel to a hospital?
No. You can complete the programme at home on a computer, tablet, or smartphone. Your follow-up appointment can usually take place over the phone or via video call.
How much time will the programme take each week?
The programme has six sessions meant to be completed over six weeks. You can take your time, work through each part at your own pace, and rest whenever you need to.
What if I find using the computer or smartphone app difficult?
The study team provides support and reminders to help you navigate the app, though you will need basic internet access and a suitable device to take part.
Will joining the study affect my usual NHS stroke care?
No. You will continue to see your GP, therapists, and stroke specialists as normal. Taking part will not replace or change your standard treatments.
How to find out more
Grace Turner
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
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