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Managing uncertainty and post-traumatic stress symptoms in stroke survivors

This research is looking into better ways to help people who have had a stroke and are struggling with upsetting feelings, often called post-traumatic stress symptoms. Strokes can be very frightening, and many survivors experience nightmares, flashbacks, and constant worry, which can make their recovery harder. While talking therapies exist, they aren't always perfect for stroke survivors. This study will create a new, easy-to-access support method, possibly over the phone or in person, to help reduce these stress symptoms and make daily life less challenging. We want to understand what works best for stroke survivors and their caregivers to improve their mental well-being after a stroke.

At a glance

What is this study about?

Imagine going through a sudden, life-changing event like a stroke. It can be a very scary experience, and for many people, the feelings of shock, fear, and sadness don't just go away quickly. This study is all about understanding and helping stroke survivors who have these strong, upsetting feelings and memories after their stroke. This can show up as nightmares, constantly replaying the event in their minds, or feeling very worried about what might happen next. These feelings can make it hard to focus on recovery and enjoy daily life.

At the moment, treatments for these kinds of upsetting feelings, like talking therapies, aren't always designed specifically for people who've had a stroke. Sometimes they are also hard to get to or keep up with. This research aims to create a new, special type of support programme that's much more suited to stroke survivors. This programme might be delivered over the phone or in person and is designed to help reduce these stress symptoms and fears. We also want to find out if eventually, this kind of help could be offered online.

By carefully working with stroke survivors, their families, and healthcare experts, this study will develop and test a new way of providing support. The goal is to make it easier for people who have had a stroke to cope with their feelings, manage uncertainty, and ultimately improve their overall well-being and recovery. It’s about making sure that the emotional side of recovery is looked after just as much as the physical side.

Key takeaways

  • This study focuses on emotional recovery after a stroke.
  • It aims to help stroke survivors with feelings like worry, flashbacks, and nightmares.
  • The research will develop a new, tailored support programme.
  • Participation involves questionnaires and giving feedback on the new treatment.
  • It could lead to better mental health support for future stroke patients.
  • Caregivers can also take part in developing the support programme.

Who may be eligible?

This study is looking for adults aged 18 or over who have recently had their very first stroke. The stroke could have been caused by a blockage or a bleed in the brain. You would need to be able to understand what the study involves and be well enough to take part, as decided by your doctor.

We are also inviting adults aged 18 or over who are unpaid caregivers for a stroke survivor taking part in the study. This means you look after a husband, wife, partner, relative, or friend who has had a stroke and you do not get paid for this care.

There are some reasons why you might not be able to join. For example, if you've had a specific type of brain bleed called a subarachnoid haemorrhage, or if you've had more than one stroke. Also, if you are currently receiving care for a serious mental illness or are involved in another study focusing on mental health treatments, you would not be able to participate.

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.

  1. Are you 18 years old or older?
  2. Have you had your very first stroke recently (within the last 8 weeks)?
  3. Was your stroke caused by a blockage or a bleed inside the brain?
  4. Do you feel well enough to take part, and can you understand what's involved?
  5. If you are a caregiver, do you regularly care for a stroke survivor who is joining the study, and are you unpaid?
Answer every question to see your result.

What does participation involve?

If you join this study, it will be split into three main parts. In the first part, we will ask you to fill out some questionnaires at 3 months, 6 months, and 12 months after your stroke. These questions will help us understand your feelings, worries, and how you are coping. We'll also collect some general health information. In the second part of the study, stroke survivors, caregivers, and health professionals will work together to help design a new support programme. The final part involves trying out this new support programme. You will give feedback through interviews or discussions about what you think of it and how it could be made better. The study is expected to run from May 2026 to August 2029.

Potential risks and benefits

Participating in this study could help us learn more about how to support stroke survivors dealing with upsetting feelings, potentially leading to better care for others in the future. We don't expect any specific risks, but you might feel tired during some activities. You can take breaks whenever you need to, and the research team will be there to support you if talking about your stroke becomes upsetting. Your time is valuable, so you will receive gift vouchers and help with any travel costs. Remember, you can choose to stop participating in the study at any time, for any reason, without it affecting your usual medical care.

Locations (6)

  • University Hospitals of Leicester NHS Trust
    City only
    Leicester, England
  • Northampton General Hospital
    Approximate
    Northampton, England
  • Lincoln County Hospital
    Approximate
    Lincoln, England
  • Lincolnshire Community Health Services NHS Trust
    Approximate
    Lincoln, England
  • Royal Derby Hospital
    Approximate
    Derby, England
  • Peterborough City Hospital
    Unverified
    Peterborough, England

Common questions

What kind of stroke do I need to have had to join?

You need to have had your first stroke due to a blockage (ischaemic) or a bleed inside the brain (intracerebral haemorrhage).

Will I have to travel far?

The study is run from the University of Leicester. If you participate, you will receive help with travel expenses.

What if I get upset during the study?

The research team will provide support if you become upset when discussing your stroke, and you can take breaks whenever needed.

Who is paying for this research?

The study is funded by the National Institute for Health and Care Research (NIHR) in the UK.

What is the main goal of the study?

The main goal is to create and test a new way to help reduce stress and upsetting feelings in stroke survivors.

How to find out more

Navneet Aujla

Always speak to your GP or specialist before deciding to take part in a study.

Discussion

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