Hope for Acquired Brain Injury

Coventry University research study using powered by H4C platform

An illustration of two hands holding a brain shaped like a heart, with the text 'HOPE 4 ABI' below.

What is HOPE4ABI?

It is hard to talk about our own mental health, emotions, and intimacy concerns with other people. This can be even more difficult after a stroke or any other type of acquired brain injury (ABI).

 Our research aims to provide a safe, supportive, online place for people with stroke and ABI to connect with others who have had similar experiences.

 We can help each other to cope with changes in personal or intimate relationships and mental health after stroke and ABI. Our team of researcher are working with a range of professionals and organisations to make sure we offer the best support.

 Our digital programme is known as ‘HOPE4ABI’.

Multiple electronic devices displaying educational content about brain health, hope, and wellbeing, with logos of Coventry University and HOPE4ABI, showing website pages, videos, and presentations.

  • Acquired Brain Injury (ABI) is an ‘umbrella term’ for any type of brain injury that happens after you are born. You might be surprised at the range of conditions that are classed as ‘ABI’…

    The most common causes of ABI are stroke and head injury (sometimes called traumatic brain injury, or TBI). But other causes include:

    • meningitis

    • encephalitis

    • hydrocephalus

    • cerebral abscess

    • anoxic brain injury

    • carbon monoxide poisoning

    • encephalopathy

    • cerebral oedema

    • compression of the brain

  • ABI affects different people in different ways, but there are similarities across the different causes or types of brain injury too.

    Some of the common effects of brain injury include:

    • changes in personality

    • difficulties with mobility

    • speech or communication problems

    • difficulties recognising or processing emotions

    The effects can last for a short time, or a lifetime. Changes in one function, ability, or area of life, can have a knock-on effect on others – like ripples in a pond.

  • Over 1.5 million people with ABI struggle with their mental health, and personal or intimate relationships can become strained. Psychological and sexual wellbeing are so closely linked – when one gets worse, so does the other. The good news is, the same applies when one gets better.

Feasability trial

We have worked with people living with ABI to co-design a new online self-management programme to support mental and sexual wellbeing after brain injury. The programme is called ‘HOPE4ABI’.

HOPE4ABI is an 8-week online course, that can be accessed at times to suit you, so you can work through at your own pace. The programme focuses on support with managing wellbeing, relationships & intimacy.

We delivered two courses as part of the trial from October 2023.

The protocol below describes a feasibility randomised controlled trial of HOPE4ABI, a digital self-management programme to support mental and sexual wellbeing, co-designed with and for people with ABI.

Publication: Wright, H., Walker-Clarke, A., Drummond, A. et al. Self-directed versus peer-supported digital self-management programmes for mental and sexual wellbeing after acquired brain injury (HOPE4ABI): protocol for a feasibility randomised controlled trial. Pilot Feasibility Stud 9, 194 (2023). https://doi.org/10.1186/s40814-023-01421-z

Further research

Our pilot study showed that HOPE4ABI is helpful and acceptable for a range of people living with stroke and brain injury. Here are a selection of quotes from our study participants after taking part in the 8 week course:

An elderly man with glasses and a beard sitting at a table in a cozy room, working on a silver MacBook laptop. Behind him are large windows showing trees with reddish leaves and green foliage outside.

“It helped me understand what has happened to me”

 “I’ve not had much help with outside agencies, as no one does it all. This course has covered everything … [and] is something we can do on our own”

“It was very helpful to get all the information in one place. This [course] has been the only place that I have found clear advice on symptoms”

Our pilot study was designed to test the process of conducting a full randomised controlled trial (RCT) in the UK. Our data shows that a full RCT is feasible, and our partners agree that it is so needed.

So, the next step of our research is to offer HOPE4ABI to over 600 people living with stroke and ABI across the UK.

If you are interested in taking part, and are:

  • UK-based

  • Aged 18 years or over

  • Living with stroke or acquired brain injury

  • Have access to an internet-enabled device

… please get in touch with us!

Early data shows that participants report better mental wellbeing, sexual wellbeing and quality of life, up to six months after the HOPE4ABI course.

Bar graph showing mental wellbeing scores at different time points, including baseline, 8 weeks, and 6 months, for self-directed and peer-supported groups.
Bar chart titled 'Sexual Wellbeing' showing data for three groups: Baseline, 8-wks, and 6-months, with measurements for each group. The chart includes error bars for each data point.
Bar chart titled 'Quality of Life' showing different groups: Baseline, 8-weeks, 6-months, with self-directed and peer-supported categories, displaying varying scores.
Participant feedback quote about a helpful course, mentioning moments of 'aha,' feeling helpful, enjoyment, taking care of oneself, taking control, and feeling not alone. Logos of HOPE4ABI and partner organizations at the bottom.

For further information contact the HOPE4ABI Research Team lead: Hayley.Wright@coventry.ac.uk

Logos of Coventry University, brainstrust, NHS University Hospitals Coventry and Warwickshire, hope for the community, relate, funded by NIHR, and National Institute for Health and Care Research.