Championing advocacy for persons with brain injury: Coverage of the 2019 International Brain Injury Association World Congress

Illustration by Hang Lin for rehabINK (attribution and license at end).

NEWS & REPORTS

By Alana Changoor & Mary Boulos


As a leading cause of disability worldwide, brain injury impacts the lives of thousands of people every year. For many, brain injuries can drastically alter their life course by leading to lasting cognitive and mood impairments, unemployment, homelessness, and greater likelihood of interaction with the criminal justice system. The pervasiveness of brain injuries necessitates research, advocacy, and care to optimize the lives of survivors.

This year, the International Brain Injury Association (IBIA) World Congress was held March 13-16 in Toronto, Canada. The IBIA World Congress is the world’s largest international gathering of professionals working in the field of brain injury, bringing together international researchers, clinicians, and stakeholders to present and discuss innovative research and clinical programs. The Congress featured workshops and panel discussions from over 120 internationally recognized speakers. This year, one of the overarching themes of the Congress was brain injury in vulnerable populations.

Vulnerable populations include individuals that have experienced homelessness, incarceration, and abuse. Such individuals are more likely to have a history of traumatic brain injury (TBI) than the general population yet are less likely to have adequate access to medical care or recovery supports (1,2,3). One of our research lab’s presentations at the Congress featured our work promoting neurological recovery in individuals involved with the justice system. Since 2017, our lab has been collaborating with the Mental Health Diversion Program in Toronto to provide neuropsychological assessments to individuals with a history of brain injury who have had contact with the criminal justice system. Therefore, this conference was an excellent opportunity to both learn from and share learnings with other researchers and clinicians working with vulnerable populations.

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Image source: Jhonis Martins (Pexels)

One of the conference highlights was a presentation by Dr. Huw Williams from the University of Exeter. Dr. Williams shed light on the complexities of managing and treating brain injury in individuals with criminal histories. He spoke about the challenges of working with these populations, including poorer rates of treatment engagement and their negative implications on long-term outcome. He also presented interesting findings regarding the connection between brain injury in youth and the higher likelihood of future criminality.

Despite the complexities of the topic, his proposed solutions were surprisingly clear-cut. He emphasized that restorative justice and early intervention are the way of the future, asserting that “addressing traumatic brain injury offers a means to not only improve the lives of those who offend, but also to reduce crime.” Shifting away from seeing these populations as “bad” or “mad”, he stressed the importance of recognizing and treating neurodisability.

Raising awareness of TBI in the justice system offers a more humane, cost-effective approach to reducing crime and recidivism, and to promoting healthier populations.

We were inspired by Dr. Williams’ research and achievements in advocating for vulnerable populations while championing policy shifts towards restorative justice approaches. His talk was not only a useful learning opportunity but also encouraged us to brainstorm future directions for our own research with the Mental Health Diversion Program.

Speaking with Dr. Williams about his experience in knowledge translation afforded us useful insights on best approaches to engaging policymakers. For instance, he guided us to consider how best to convene interest groups and stakeholders, and on communication strategies to propose actionable policy steps that are both palatable and compelling to political leaders.

Dr. Williams’ sentiments were mirrored by other leaders in the field, including Dr. Tom McMillan from the University of Glasgow. Dr. McMillan discussed the high prevalence of childhood trauma (e.g., loss, abuse) and history of head injury in individuals involved with the justice system. He described the limited access to supports/interventions available in the prison system and at the time of release, thereby preventing individuals who have been incarcerated while living with disability from their TBI from thriving.

Ohio State University’s Dr. John Corrigan also described the fragmented care for individuals in the justice system. Moreover, he detailed the three greatest individual risk factors for criminal activity: low socioeconomic status, mental illness, and TBI. These findings highlight important, potentially modifiable factors to reduce the risk of crime and to optimize health outcomes.

On the second day of the Congress, we encountered a survivor of brain injury, a rarity in a conference dominated by researchers, clinicians, and industry stakeholders. This individual described her difficulties navigating the healthcare system after her injury ― an experience fraught with broken channels of communication, inadequate follow-up by healthcare professionals, and lack of access to the specialized medical care needed for recovery. Her story brought to life the urgency and need for more patient-centered care, knowledge translation, and health systems planning in rehabilitation.

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Mask from OBIA’s “Unmasking Brain Injury” art exhibit

Our interactions during the Congress caused us some concern with the structure of traditional, international research conferences. While we had begun IBIA as young professionals eager to advance our careers, our conversations with Dr. Williams and individuals with lived experience opened our eyes to the bigger picture. While many of the researchers at this conference – including us – were engaged in knowledge translation efforts, the problem is that participating in conferences remains inaccessible and prohibitively expensive to the patients for whom such research findings are most relevant. While this experience was incredible and memorable for us, we have newfound motivation for improving and increasing the number of avenues through which how we share our work with the general public.

Therefore, we would like to leave readers with a link to one of the most powerful presentations at the World Congress: “Unmasking Brain Injury,” an art exhibit by the Ontario Brain Injury Association. This exhibit ‘unmasks’ some of the individual stories of the thousands of Ontarians living with ongoing disabilities resulting from a brain injury by promoting awareness and giving survivors a voice. Each survivor’s mask tells a profound story about their journey with brain injury, whether highlighting the time of injury, the recovery process, or their current day-to-day living. The display reminded us of the unique clinical needs and recovery journeys that have fuelled our research questions, and that the voices of brain injury survivors should always be at the forefront of the work that we do and the findings we share.

Acknowledgment

Featured illustration by Hang Lin for rehabINK.

Image attribution: https://www.flickr.com/photos/18378305@N00/15973114557/

Copyright license: https://creativecommons.org/licenses/by-nc/2.0/

To refer to this article, it can be cited as:

Changoor A, Boulos M. Championing Advocacy for Persons with Brain Injury: Coverage of the 2019 International Brain Injury Association World Congress. rehabINK. 2019;7. Available from: https://rehabinkmag.com


References 

  1. Topolovec-Vranic J, Ennis N, Colantonio A, Cusimano MD, Hwang SW, Kontos P, Ouchterlony D, Stergiopoulos V. Traumatic brain injury among people who are homeless: a systematic review. BioMed Central Public Health. 2012;12(1):1059.
  2. Shiroma EJ, Ferguson PL, Pickelsimer EE. Prevalence of traumatic brain injury in an offender population: A meta-analysis. The Journal of Head Trauma Rehabilitation. 2012;27(3):E1-0.
  3. Kwako LE, Glass N, Campbell J, Melvin KC, Barr T, Gill JM. Traumatic brain injury in intimate partner violence: A critical review of outcomes and mechanisms. Trauma, Violence, & Abuse. 2011;12(3):115-26.