Hope for Acquired Brain Injury
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’.
What is Acquired Brain Injury?
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
Effects of ABI
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.
Positive changes
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.
FEASIBILITY 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:
“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.
For further information contact the HOPE4ABI Research Team lead: Hayley.Wright@coventry.ac.uk
