Veterans with Traumatic Brain Injury: M.O.M. to the Rescue
Cheryl Krause-Parello, Ph.D., project lead, a professor, interim associate dean for nursing research and scholarship, director of Canines Providing Assistance to Wounded Warriors® (C-P.A.W.W.®) in FAU’s Christine E. Lynn College of Nursing, and a faculty fellow of FAU’s Institute for Human Health and Disease Intervention (I-HEALTH). (Photo by Alex Dolce)
Traumatic brain injury (TBI) is an invisible wound of war and a signature injury of military troops. About 30 percent of those who have served in recent conflicts have suffered a TBI, which often leads to intellectual disabilities sometimes called cognitive disabilities. Many veterans suffering from TBI are less likely to reach out for health care services or engage in research opportunities, contributing to unmet health care needs.
Florida Atlantic University’s Christine E. Lynn College of Nursing has received $250,000 from the Eugene Washington PCORI Engagement Awards program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI), to fund a project titled “Mind Over Matter (M.O.M.). Cheryl Krause-Parello, Ph.D., project lead, a professor, interim associate dean for nursing research and scholarship, director of Canines Providing Assistance to Wounded Warriors® (C-P.A.W.W. ®) in FAU’s Christine E. Lynn College of Nursing, and a faculty fellow of FAU’s Institute for Human Health and Disease Intervention (I-HEALTH), has joined forces with like-minded stakeholders across the country.
The M.O.M. is part of a portfolio of projects that PCORI has funded to help develop a community of patients and other stakeholders equipped to participate as partners in comparative clinical effectiveness research (CER) and disseminate PCORI-funded study results. Through the Engagement Award program, PCORI is creating an expansive network of individuals, communities and organizations interested in and able to participate in, share, and use patient-centered CER.
The M.O.M. project, which will have four units in Ohio, Florida, South Carolina and Texas, will engage veterans with TBI, their caregivers and other stakeholders to bolster patient-centered outcomes research and comparative effectiveness research in order to identify treatment options for TBI that are effective, acceptable, and meaningful to the veteran population. M.O.M. members include veterans, caregivers, researchers, clinicians, TBI community advocacy organizations, and other key stakeholders who have a connection to, expertise in, or lived experience related to TBI.
Krause-Parello is spearheading the project with co-leader Elisa V. Borah, Ph.D., research associate professor and director, Institute for Military and Veteran Family Wellness in the Steve Hicks School of Social Work within the University of Texas at Austin.
“There is no ‘one-size-fits-all’ to treat traumatic brain injury, which has profound effects on veterans and their families,” said Krause-Parello. “Veterans with traumatic brain injury face unique challenges in processing information, oftentimes relying upon caregiver support for accessing care. Sound treatment options and healthcare decision-making requires these veterans and their caregivers to have accurate, up to date, understandable information, and the decision-making capacity to process that information.”
M.O.M. will help uncover ways veterans with a TBI want to receive healthcare information, how they want research results communicated, and in what mediums in the context of COVID-19. The project will build competencies and skills of veterans with TBI to become meaningful partners with researchers. The project will give these veterans and their caregivers an active voice, a platform for engagement and closing the knowledge gap through the creation of a veteran-driven roadmap to research on TBI. M.O.M. teams will prepare them for each stage of the research process, so they are more familiar and comfortable with engaging in patient-centered outcomes research and comparative effectiveness research.
The M.O.M. team will leverage existing veteran networks established in diverse regions of the U.S. through current and past PCORI-funded community engagement projects and numerous extramurally funded research studies. The project team will host think tank meetings, develop a formative evaluation tool, create field notes templates, generate “Think Tank Times” newsletters, host virtual workshops and a virtual town hall, and attend retreats.
M.O.M. team members are affiliated with the University of Texas at Austin; The Ohio State University; Medical University of South Carolina; and the University of South Florida. In addition to veteran TBI consultants (patient partners), clinicians, and researchers, TBI advocacy organizations include the Brain Injury Association of America and the Concussion Alliance.
“Many veterans with traumatic brain injury remain untreated due to the consequences associated with injury,” said Safiya George, Ph.D., dean, Christine E. Lynn College of Nursing. “This important and generous funding from PCORI will enable all of the M.O.M. stakeholders to effectively provide veterans, caregivers, and health practitioners with the best treatment options available and to find solutions to better overcome obstacles that prevent our veterans from seeking healthcare services.”
Following a TBI, psychiatric problems such as post-traumatic stress disorder (PTSD) often result in an inability to regulate emotions and control impulsive behaviors, as well as an increased risk for suicide. Sadly, it is estimated that 20 military veterans take their own life each day, and ineffective management of PTSD is believed to be a major contributor to suicide.
TBI is a disruption in the normal function of the brain that can be caused by a blunt trauma or improvised explosive devices force to the head. Common comorbidities of a TBI include cognitive changes; epilepsy; chronic pain; headache; sleep disorders; dizziness and balance issues; substance misuse; depression, anxiety and behavioral disturbances. The cost of lifetime treatment for a TBI in the U.S. is estimated at $85,000 to $3 million.