It started, as with many modern love stories, with a swipe.
In 2015, Paul van Donkelaar, a recently divorced neuroscience professor, met Karen Mason, a woman working with survivors of intimate partner violence.
They started dating and fell in love. To begin with, they were just another couple who happened to have found their happily ever after through online dating. But it soon became clear that there were bigger forces at play.
“We’re definitely unique,” says Karen, who is executive director of Kelowna Women’s Shelter in British Columbia, Canada.
“The fact that the universe decided to put Paul and I together, when I am the executive director of an organisation that provides shelter to women fleeing violence, and he’s a neuroscientist with an expertise in concussion. There’s clearly some universal plan afoot.”
Not long after they began dating she came across an article highlighting an epidemic of traumatic brain injury (TBI) among survivors of intimate partner violence (IPV).
As a professor of neuroscience at the University of British Columbia in Canada, Paul has been researching brain injury in the context of sports concussion for more than 20 years.
But while much has been done to explore the impact of head injuries on athletes, the studies on IPV are still relatively scarce. He started to question why more work wasn’t being done.
“I didn’t have a good answer,” he admits.
One in three women, and one in four men, will experience some form of IPV in their lifetime, according to the US-based National Coalition Against Domestic Violence (NCADV).
In Canada, statistics show that 207,000 women will experience a severe violent episode at the hands of a partner each year.
Of those women who seek help, either from medical professionals, A&E departments or women’s shelters, as many as 90 per cent report symptoms consistent with concussion.
“For every man who suffers a concussion playing the sport they love, 7,000 women suffer the same injury at the hands of the man they love,” Karen announced in her and Paul’s 2017 TEDxTalk ‘Ahead of the Game’.
“I realised that this was something that was probably going on with most of our clients and I insisted that we needed to do something about it,” she says now.
“We know that most physical violence within relationships is based on blows to the head and neck and there’s also the strangulation aspect.
“Most women experience physical blows to the face, head and neck, and strangulation, so brain injury is a natural implication of that.
“The stories we hear are extreme. One woman has spoken about the number of times she was thrown out of a moving car, and the occasions on which he repeatedly smashed her head against the floor.
“It is distressingly common.”
With their individual expertise, Karen and Paul were well placed to make a real difference to these women. In 2016, they launched their project Supporting Survivors of Abuse and Brain Injury through Research (SOAR) – a collaboration between the University of British Columbia and Kelowna Women’s Shelter.
In June 2019, they received a US$1m grant from the Canadian government’s department for Women and Gender Equality, to continue the research for another five years.
The study takes several approaches, both scientific and community-based, to improve the quality of life for survivors of IPV.
“We’re in a position to create some promising practices that may change the way that women’s shelters interact with their clients, the referral network and the way healthcare systems and community-based supporters accommodate and support women who have experienced IPV,” says Paul.
The fact that the government has supported the project so substantially is noteworthy in itself, and shows a recognition and understanding of the desperate need for this research.
“It’s groundbreaking. It’s very important to have direct funding supporting research around this topic, because it could have a huge impact on the quality of life of participants themselves, and in the way practices are done,” Paul adds.
“The goal of this specific funding is to create a blueprint that can be used across Canada, both within the healthcare system, and within community organisations that support women of IPV.
“That’s our ultimate goal.”
Recruiting participants from the Kelowna Women’s Shelter, Paul and his team are measuring physiological changes such as blood flow, to better understand the characteristics of brain injury in survivors.
They are also carrying out assessments for psychological comorbidities such as posttraumatic stress disorder (PTSD), anxiety and substance abuse.
He is using assessments which have proved to be successful over many years of studying concussion in athletes.
Sports related concussions and the link between contact sports and CTE are a growing concern for athletes.
The Centre for Disease Control (CDC) now estimates up to 3.8 million sports related concussions occur every year in the US and more than 100 NFL players have been diagnosed with CTE at the VA-BU-CLF Brain Bank in Boston.
While studying the effect of repetitive impacts to the head in contact and non-contact sports, Paul’s research was among the first to show that certain markers of nerve cell injury were elevated following multiple hits, and that these could be linked to a higher number of concussion-like symptoms such as headaches, dizziness and confusion.
Concussions sustained through IPV, however, are more complex to dissect.
“It’s clear that people who have experienced IPV are very likely to have a brain injury as a result of that, but it’s not like in a sports concussion situation where it happens at a sporting event, there are lots of witnesses and you can very quickly do an assessment and determine that a concussion has taken place,” says Paul.
“In the IPV population quite often it’s months to years before they seek help and so the injuries tend to be remote in time and tend to interact with some of the comorbidities.
“It’s really important to disentangle all of those factors and get a good sense of how much of the challenges they are currently facing are due to the head impacts they have received as a result of their experience.”
The information will then be used to develop tools and training resources for frontline staff and services who come directly into contact with survivors of IPV, to help them provide more effective support.
Frontline workers will also be trained in how to spot the signs and symptoms that someone is suffering from a brain injury, to help them flag up vulnerable women.
Women who may come across as “difficult”, suffer from behavioural issues, memory loss, or struggle to complete basic tasks that would allow them to move forward into a life free from abuse, are actually most likely displaying symptoms of an undiagnosed brain injury.
“For gender-based violence research, this is so critical as it is not something that we have ever taken into account before,” says Karen.
“For those of us who work in the industry, it’s going to play a huge role in creating new support systems when we’re trying to help women be healthy and better.
“If you’re coming to this without any previous knowledge that perhaps there are other factors at play such as a brain injury, your level of empathy and patience, and ability to support that woman is severely diminished.
“We should be approaching every woman we serve based on an understanding that she probably has suffered at least one, if not more, brain injuries.”
This could be as simple as making small adjustments such as interviewing a client in a calming, dimly lit, environment away from other activity, as opposed to a brightly lit, noisy room.
“A simple step like that is very specifically directed at supporting someone who has a brain injury, and is something that frontline workers and shelters could be doing right now,” says Karen.
Their long-term goal is to create a community-based support referral network, bringing various support systems together, from medical care to occupational therapy and speech pathology, so that survivors who may have sustained a brain injury have access to a wealth of support on hand.
Paul is also developing a Concussion Awareness Training Tool (CATT), a web-based utility, originally designed for use in sports concussion.
It has proved hugely successful for educating and increasing awareness of concussion and TBI in the sports industry, and it is hoped it can do the same for those working with survivors of IPV.
“The idea is to create a new module of the CATT online, specifically for those working in the IPV sector, with the goal of increasing awareness of TBI in the population and then disseminating that as widely as possible,” he says.
“We hope to have that up and running and in place by next year.”
In the meantime, SOAR is already beginning to see results on the ground, with Kelowna Women’s Shelter leading the way.
“It’s the thing that is in mind for staff whenever they do an intake with a new client, or whenever they are dealing with a particularly challenging client,” says Karen.
“Five years ago that wasn’t the case, so we’re definitely seeing change.
“I know other shelters are now thinking about brain injury and I’ve had executive directors from other shelters tell me that it has changed the way they approach their clients.”
But it’s the survivors of IPV themselves who have seen most of the impact.
The fact that someone wants to listen and acknowledge their experience has given them a sense of empowerment.
“For women experiencing IPV this is their normal,” Karen explains.
“It might be normal to wake up and be dizzy because of the physical fight they had with their partner last night, or forget things all the time and he tells her she is just stupid.
“She internalises all those messages and it might never cross her mind that she actually has a physical condition that is a direct result of how her partner treats her.
“We’ve had women go through this process and almost have a sense of empowerment at the end, because they feel like they have a label for this, that it’s not their fault, and maybe there are things that can be done to help them.”
And ultimately, that is what the project is all about.
“The reality is, women make up more than half the population, and at least a third of them, statistically, will be in this situation.
“Many, if not most of them, will see some sort of impact to the head and possibly a brain injury,” says Karen.
“Brain injury can be a hidden injury and IPV is also often an invisible problem.
“In 2019, we’re still dealing with some of that shame and stigma, it’s still an issue that many people prefer to pretend doesn’t happen.”
Paul and Karen are not those people.
They are committed to increasing research into the impact of concussion beyond what might be seen in athletes, says Paul: “We know helping them achieve a healthy life, free from abuse, is good for all of us.”
It’s a good job then, that they both swiped right.