Imagining a more equitable future for acquired brain injury care

With symptoms including challenges with memory, comprehension, communication, hearing loss, and mood swings, an acquired brain injury can have a significant impact on a person’s daily life.

Acquired brain injuries are any brain injuries that occur after birth and can be caused by traumatic brain injuries, strokes, tumours, metabolic disorders and infections, among other factors. While their impact can depend on the injury’s severity and the part of the brain affected, research is demonstrating how a person’s individual circumstances can play a critical role in their recovery and the long-term impacts on their health.

One of the biggest misconceptions of acquired brain injury is who is at risk.

Domestic violence, stroke, infections, assault, falls and accidents are major causes of acquired brain injury, but are rarely recognized, especially compared to the high degree of awareness around sports-related injury. Acquired brain injury is incredibly diverse in its causes, including many types of physical and internal injury.

“When we talk about a brain injury, we often think about athletes and concussions – football players, hockey players,” says Dr. Vincy Chan, Scientist, Toronto Rehab and KITE Research Institute at UHN. “It’s so important to recognize that so many other people are affected: older adults, underserved populations, people who are experiencing homelessness, survivors of intimate partner violence, people involved with the criminal legal system or infants.”

The impacts on an individual’s life can also vary significantly depending on what are called the “social determinants of health” – a group of personal, social and economic factors like gender, socioeconomic status, race or ethnicity, income, employment and geographic location that can impact a person’s experiences with health and health care.

According to Dr. Tatyana Mollayeva, Scientist, Toronto Rehab and KITE Research Institute, “Equity-related issues can profoundly impact how people experience disability related to acquired brain injury, across injury severities or causes. Marginalized and lower-income people are more likely to experience difficulties in obtaining quality care, which can delay recovery. This inequity in access can exacerbate short- and long-term consequences of injury.”

For example, a person who earns a lower income or who has lost their job as a result of their brain injury may face challenges accessing medications or rehabilitation services that aren’t covered by provincial health insurance. Someone who lives in a rural area may not be able to regularly travel long distances for specialized care, especially if they cannot drive themselves. A parent of young children may be hindered in their recovery because they can’t take time away from work and childcare to get adequate rest.

As a result, two people with similar injury severity may have very different recovery experiences and outcomes based on their unique life circumstances.

People from disadvantaged or historically marginalized communities often face multiple intersecting vulnerabilities.

The social determinants of health can also impact a person’s probability of experiencing potentially traumatic causes of acquired brain injury. For people who sustain a brain injury due to assault or domestic violence, recovery can be complicated by the need to deal with the symptoms of the brain injury itself, as well as the emotional toll of what they experienced. Given that many people in lower income or other marginalized communities also have reduced access to mental health support, recovery becomes all the more challenging.

“I think to really talk about compassionate care, we have to recognize the role that social determinants of health and health inequities play in how they experience the brain injury, how they get it in the first place, their recovery and the type of care and support that they need and have access to. We need trauma- and equity-informed care,” says Dr. Chan.

Adding to the complexity of acquired brain injury care, the impacts of the injury can manifest years after the original injury occurred, and a patient’s care needs can change significantly over their lifetime.

Acquired brain injury can occur as early as infancy, and can have long-term impacts on cognition and behaviour. These injuries and their severity may go undetected initially but as a child grows, their parents may identify that they have begun to miss developmental milestones, prompting them to seek support. These needs may change as the child hits different milestones like beginning school.

Their needs may change again as they transition to adulthood, taking on additional responsibilities such as entering the workforce and learning to recognize and advocate for the accommodations they need in work, health care and all other areas of their lives.

A recent study led by Dr. Chan found that more than one in three of the over 3.6 million Ontarians in the study sustained a traumatic brain injury (a type of acquired brain injury caused by external physical force) requiring medical attention by the age of 25. This highlights the importance of initiatives like the LIFEspan Clinic, which help young people with brain injuries navigate life transitions.

Access to supportive care that addresses brain injury over the long term, across life’s changes, is also impacted by the social determinants of health. According to Dr. Chan, more studies examining the impact of the social determinants of health on brain injury care are needed in order to develop new strategies for early intervention after traumatic brain injury that account for the social determinants of health.

Team UHN is developing better ways to care for people with acquired brain injury that more holistically addresses the social determinants of health.

Dr. Mollayeva points to Toronto Rehab’s approach to person-centered care that incorporates not just an interdisciplinary care team, but patients’ family members, community organizations and advocates who work together to develop approaches to care that better meet each patient’s unique needs. 

Through specialized brain injury programs and cognitive, physical and occupational rehabilitation programs, patients can access assistive technologies and adaptive devices – often developed in collaboration with the KITE Research Institute – as well as support focused on community integration and workplace accommodations. Dr. Mollayeva says, “These programs not only help people make sense of their injuries, but also teach them preventive strategies, support recovery, and enable return to home and work environments.”

Supports like these are incredibly important for everyone with acquired brain injury, but the team knows there is more to be done to address the impacts of social determinants of health and ensure care meets the diverse needs of every patient with a brain injury.

“One of the things we started doing is to look at whether clinical practice guidelines, which are gold-standard, account for inequities that people with brain injury might experience,” says Dr. Chan. Researchers at Toronto Rehab are reviewing these guidelines, which define the standards of brain injury diagnosis and treatment based on the best available research evidence. These researchers are exploring strategies to raise awareness among physicians and everyone else who cares for people with acquired brain injuries about the importance of recognizing where patients facing adverse social determinants of health can fall through the gaps.

For example, in an instance where clinical guidelines may recommend scheduling a follow-up appointment months later, patients experiencing homelessness are at high risk of not being able to come back. The daily challenges of finding food and a safe place to sleep, among numerous other challenges, make it extremely difficult to return for their appointment. Recognizing this challenge, these researchers are investigating potential new approaches that could help ensure unhoused patients can keep accessing care.

Through this important work, Team UHN is helping to build a more equitable future for everyone living with an acquired brain injury.