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Leveraging Patient and Family Perspectives to Improve Systems of Care for Traumatic Brain Injury

Improving traumatic brain injury outcomes by supporting patients soon and long after injury

Full Project Name:Leveraging Patient and Family Perspectives to Improve Systems of Care for Traumatic Brain InjuryPrincipal Investigator:Lindsay Nelson, PhD, NeurologyCo-Investigator:Staci Young, PhD, Family Medicine; Courtney Barry, PsyD, MS, Psychiatry and Behavioral Medicine; Hirad Hedayat, MD, NeurosurgeryAward Amount:$200,000
Award Date
July2022
Project Duration:24 months

Project Description Narrative:


Traumatic brain injury is a common cause of disability for Wisconsin residents. Individuals with traumatic brain injury often have to cope with the direct consequences of brain injury—such as headache, mood changes, and thinking problems—as well as other bodily injuries and the difficult circumstances that cause and result from the injury-inducing events. Moreover, individuals with traumatic brain injury treated at level-one trauma centers like Froedtert Hospital have disproportionately high levels of socioeconomic disadvantage, which complicates care, recovery, and outcome.

Although progress has been made in understanding the consequences of traumatic brain injury on patients' functioning, little is known about why some individuals—especially those of greater socioeconomic disadvantage—have persisting, marked difficulties after injury or how to help them cope with or minimize the long-term effects.

One reason for the lack the knowledge to minimize the burden of traumatic brain injury is that the research to date has assumed a narrow perspective focused on the direct effects of brain injury (e.g., cognition, mood, physical function) without attention to how patients' holistic experiences and personal circumstances influence life function and quality. This project will use a novel mixed-methods, community-engaged approach to increase understanding of the patient (and caregiver) perspective following traumatic brain injury.

A diverse collaborative team will synthesize rich patient feedback with personal and professional experiences to identify actionable short- and long-term healthcare and community initiatives aimed to improve traumatic brain injury outcomes and reduce health disparities in southeastern Wisconsin.

Project Updates:


  • Conducted 30 patient interviews and performed a preliminary review of the data, which has driven two grant submissions in the first project

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