Standardizing measurement of the physical, social and emotional effects experienced by caregivers of people with TBI could lead to better support for an overlooked group.
A traumatic brain injury happens in an instant: a battlefield blast, a car crash, a bad fall. But the effects can last a lifetime – and can leave the survivor dependent on daily care from their loved ones for decades.
Now, a new tool seeks to give a voice to those caregivers, who spend countless hours tending to the daily needs of family members whose moods, thinking and abilities seemed to change overnight.
Developed by researchers from across the country who worked with hundreds of caregivers of people with TBI, it provides a new standard way to measure the physical, mental and emotional effects of caring for survivors of TBI.
The researchers hope it can form the basis for a new wave of research that could inform clinical care for patients and their caregivers, as well as, caregiver training and support programs, and even caregiver reimbursement policies.
They’ve published the results of a rigorous evaluation of the tool in a special supplement to the journal Archives of Physical Medicine and Rehabilitation, and are sharing the tool on several platforms for researchers.
They also hope the tool, called TBI-CareQOL Measurement System, could be useful to researchers who want to study caregivers of other patients whose “new normal” is very different from the one they had before, and isn’t likely to change.
Many TBI survivors suffered their injury in the prime of life, and many during service to the nation. TBI is the most common injury among service members who returned from the wars in Iraq and Afghanistan, with nearly 384,000 service members and veterans affected. One-third of them, and another 90,000 civilians who sustain TBIs each year, are left with moderate to severe disability from their injury.
“Caregivers of persons with TBI are underserved and overlooked,” says Noelle Carlozzi, Ph.D., the University of Michigan Medical School psychologist who led the effort. “The medical system treats the patient and sends them home, but behind many of our severely injured patients are family caregivers who we don’t do enough to train, support or study in a scientific way.”
