Among the challenges people with traumatic brain injury face is the “invisible” nature of their disability, and they might have difficulty communicating their distress, particularly during high-stress and unexpected encounters with law enforcement or emergency medical personnel.
A practical lifeline for these individuals is a wallet-sized brain injury identification card, which contains at-a-glance information about brain injury and communication strategies that could be critical to the health and safety of the cardholder.
An estimated 24,000 individuals in the country with brain injuries have acquired such identification cards, but no research has characterized their benefits or limitations, or investigated whether they could be refined to become even more effective tools. To address this gap, the Brain Injury Research Center at Mount Sinai conducted a comprehensive study, the results of which were recently reported in the journal Rehabilitation Psychology.
Sarah Bannon, PhD (left), and Eric Watson, PhD, ABPP (right), are studying how ID cards detailing the often invisible symptoms of survivors of traumatic brain injury can be useful, as well as ways to improve existing cards.
The study involved a focus group of 16 people who had applied for and used the brain injury identification card. Participants were questioned about the card’s benefits in difficult, stressful, and emergency situations.
“Everyone in our focus groups had positive things to say about the card, but what they particularly highlighted was how it allowed them to be self-advocates if they needed emergency medical attention, or needed to quickly explain to a stranger that they had a brain injury,” says lead author Sarah Bannon, PhD, Assistant Professor of Rehabilitation and Human Performance at the Icahn School of Medicine at Mount Sinai.
The card sped up the efficiency of communication and helped with the quality of care and attention card users received. It also helped many of them in their workplace, facilitating communication with everyone from their bosses to their colleagues, which is helpful for a population that often faces reduced community participation or social withdrawal.
The study was a collaboration between New York City personal injury law firm De Caro & Kaplen, LLP, which had created and distributed the ID cards since 2018. The firm, known for its dedication to the brain injury community, approached Mount Sinai for its reputation as a leading brain injury research center and sought ways to enhance the card’s impacts. Dr. Bannon and co-author Eric Watson, PhD, ABPP, Assistant Professor of Rehabilitation and Human Performance, worked with Shana De Caro and Michael Kaplen, founders of the law firm, to recruit participants via email listservs and propel this research initiative.
“Many of the symptoms of brain injury can appear invisible to the public, and just holding a tangible card gave these survivors a sense of control over their identity and injury and the narrative they wanted to create,” notes Dr. Watson. “Put another way, it actually helped move them toward acceptance of their condition in a way that made it easier to communicate with others.”
These brain injury ID cards were created by personal injury law firm De Caro & Kaplen, LLP, in 2018. They are meant to help the individual communicate their disability to the public, especially in moments of emergency where they might be unable to do so effectively.
The front of the card displays the patient’s name and emergency contact information, as well as a header explaining that the individual is a survivor of traumatic brain injury. The back of the card contains information about the individual's symptoms relating to the injury.
Focus group participants strongly praised the ease of obtaining the laminated card, which displays on the front the patient’s name and emergency contact information under a header identifying the holder as a brain injury survivor. The other side lists up to eight symptoms of brain injury the holder might experience, which could include cognitive, motor, function, or behavioral symptoms, such as blurred speech, confusion, disorientation, anxiety, anger, aggressive behavior, and/or seizures. Users praised the card for helping them communicate these symptoms in a nonconfrontational manner, and to challenge or correct the impressions others might have of their behavior or presentation when symptoms arise.
Regarding improvements, participants expressed a desire for a digital card with more personalized information that could be integrated with users’ smartphones or other devices. “Another suggestion we heard repeatedly was for improving the legitimacy of the card by having it issued by a recognizable public or law enforcement agency, or a large medical provider,” says Dr. Watson.
Aware that their work is far from complete, Drs. Bannon and Watson have launched a follow-up study to explore in greater depth user satisfaction with the identification card in areas such as self-efficacy and promoting coping skills. That trial involving a larger cohort is expected to be completed in early 2025.
The Mount Sinai team is making an increasingly strong case for the cards as a vehicle to improve brain injury survivors’ sense of safety, self-advocacy, and participation in daily activities. “Our field has medical and behavioral interventions that can be extremely helpful after a person experiences a brain injury, but these resources are typically confined to a hospital setting,” points out Dr. Bannon. “The brain injury identification card moves with people everywhere they go, and therefore offers a low-cost, low-tech, highly practical solution that could be scaled up to impact countless numbers of brain injury survivors.”
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Sarah Bannon, PhD
Assistant Professor of Rehabilitation and Human Performance
Eric Watson, PhD, ABPP
Assistant Professor of Rehabilitation and Human Performance