A world-first project to advance understanding of the impact of domestic violence and brain injury, to empower support services to better assist survivors, is being launched in the UK.
The Disabilities Trust is working with five domestic abuse services across the country to establish the an estimate of prevalence of brain injury and how that impacts the day-to-day lives of those affected.
The partnership is believed to be unique globally in terms of its breadth and level of engagement, and aims to increase the understanding of brain injury in domestic violence services, enabling them to identify the signs of brain injury and deliver the bespoke support that each survivor needs.
Statistics show that two thirds of domestic abuse practitioners in the UK feel mostly unprepared to support someone with a brain injury, highlighting the urgent need for change.
Now, The Disabilities Trust – which has helped to lead vital research in this area for many years, including securing standardised questions for all prisoners on ABI sustained through domestic violence – is spearheading the charge to make positive change to the lives of those living with brain injuries caused by intimate partner violence (IPV).
“We are working hand in hand with the domestic abuse sector on what is truly a groundbreaking project,” says Jocelyn Gaynor, head of Foundation at The Disabilities Trust.
“We know from research that there is a gap in detailed knowledge from both the brain injury and domestic violence sectors in how best to support survivors, and that there is an absence of specialist training.
“To help address this, we want to understand the impact of brain injury on everyday functioning and the practical implications of this on people’s lives.
“We want to ensure people working in this sector have the skills and tools they need to support survivors, and we’re delighted this project has been embraced as it has been.”
The project builds on groundbreaking research from the United States, where Ohio Domestic Violence Network worked alongside public health scientist Dr Julianna Nemeth from Ohio State University – supported by Katherine Snedaker, founder of Pink Concussions – to highlight the scale of brain injury in domestic violence survivors, but the huge lack of awareness from those in positions of support.
By bringing together agencies across the state to consider the impact and prevalence of brain injury in domestic violence survivors – in what was often the first time many had made the link – positive change continues to be made for people living across the state.
The group has become a beacon in the US for its work, which began in 2016, with the National Coalition – which works with state-wide domestic violence coalitions across the country – reaching out to Ohio for guidance on addressing brain injury.
They are now working collaboratively with the The Disabilities Trust to take forward the significant progress and awareness they gained during their work in the US.
“In this organisation, that has provided support to domestic violence victims for 30 years in the United States, we have never really considered brain injury as a framework for understanding things,” says Rachel Ramirez, founder and director of the Center on Partner-Inflicted Brain Injury at the Ohio Domestic Violence Network, which was established as a result of the research.
“We were holding groups with people who had spent their entire careers in domestic violence, and they really were thinking about this for the first time.
“And even though when talking directly with survivors who were very open about the repetitive head trauma that they had experienced, none of them had put a context of brain injury on that.
“So if they’d said ‘I’ve been hit on the head more times than I even know’, and we’d have asked ‘Well do you have a brain injury?’, no-one would have made that connection.
“I had worked at a statewide organisation for a decade working on domestic violence and did a major capacity building project on trauma-informed care across the state for years. And I never once mentioned brain injury at all.
“It’s one of those things where it’s very quickly obvious once you stop and think about it, but just no-one ever had.”
The research, which Dr Nemeth recalls was done on “a shoestring” budget due to lack of funding, they were able to bring together all of the 75 organisations which form part of the state-wide Domestic Violence Network and find out the true situation and implement action from there.
“We basically applied a public health planning process,” says Dr Nemeth, who has a background in domestic violence advocacy.
“To better help survivors with mental health and brain injury, we needed to learn more so the programmes of support can better accommodate their needs.
“We did a needs assessment, where we talked to domestic violence service organisation staff members about what they knew about brain injury, and what they would need in order to provide more effective services for survivors.
“Then we talked to survivors about their experiences, and what they would need to be able to access services better.
“And what we found was there was a huge discrepancy between survivors experiences coming into services, and the training and the preparation that advocates had.
“So as a result of this, we’ve created a new intervention called Care. It’s really an advocacy framework that takes into account brain injury, it puts brain injury on the table along with trauma and all the other issues that domestic violence survivors are dealing with, but really recognises that brain injury is one of those things that’s really affecting the way survivors are coming to services and are able to move through services effectively.
“We’ve created a whole host of tools that advocates then can use directly with survivors, to directly speak about it head injury. They didn’t want medical terms, it is all in lay terms and accessible language.
“This isn’t about diagnosis, it’s about truly just trying to communicate injuries that have happened to you, because of violence that been inflicted on you. It’s not their fault, they’re not crazy, it’s not what their partner is saying to them – there is an explanation for what is happening to them.”
With training being implemented across Ohio Domestic Violence Network, the Care intervention is delivering results to survivors state-wide, with outcomes charted through a new evaluation measure.
“We wanted to understand how the member organisations were using the Care intervention, as well as understanding the impact that that intervention was having on advocacy practice, both from the perspective of the practitioners as well as the survivors,” says Dr Nemeth.
“We have documented that the Care intervention is effective and raising the trauma-informed practices of advocates in general, so they’re more flexible and more accommodating to meet the needs of survivors in general, because they’re now putting brain injury on the table.
“And they’re also around a wide variety of issues, including substance use and mental health and suicide and other concerns that survivors brings to the table, which we can do because we’re addressing brain injury directly, recognising this is what brain injury survivors are dealing with.”
The project also saw the creation of the US’s first Center on Partner-Inflicted Brain Injury, which is helping to influence approach nationally.
“We provide lots of training and technical assistance and talk to people across the country around this area,” says Rachel.
“I think we’ve also recognised that there are so many unique characteristics of a domestic violence survivor’s situation – safety concerns, the inter-personal nature of the violence, this is a really very different beast than head injury from sports, or the military, or car accidents or falls.
“We can’t take existing brain injury protocols and make a couple of little changes – we recognised the need for something entirely different and separate.
“In domestic violence and the dynamics behind that and the gaslighting, survivors often think they’re crazy, they’re stupid, this is may fault, all the things that are told to them throughout their abusive relationships.
“But by having a context and to be more self-aware of how they’ve been impacted by their brain injury, and to have a reason for that, is so important.
“I think that we’ve come very much to believe that early identification, and even just knowledge that survivors can have themselves, can really help prevent additional, worse health outcomes in a multitude of areas.”
Through the pioneering work of Ohio, which continues to help change thinking across the United States, the outlook for survivors in accessing domestic violence services is improving all the time, but with much left to do. The fact the UK is now building on this work further is something very much welcomed by both Rachel and Dr Nemeth.
“For us, it was kind of like we got to the end of the project, and then you realise we’re just at the base of the mountain,” says Dr Nemeth.
“And there’s this huge mountain to climb, but that’s one of the reasons why we were so excited about connecting with the UK.”
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