In an instant, a traumatic brain injury occurs. This ugly scenario can happen in a car crash, a battlefield blast, or a bad fall. The sad part is that the effect can last a lifetime and leave the survivor dependent on daily care from their loved ones for so many years.
There is a new tool that wants to give a voice to those caregivers, who spend countless hours tending to the needs of their family members every day whose moods, thinking, and abilities appeared to change overnight.
Researchers from across the country developed the tool. They have worked with hundreds of caregivers of people with TBI, and the tool provides a new standard way to measure the mental, physical, and emotional effects of caring for survivors of TBI.
The researchers hope is that the new tool will form the basis for a new wave of research that could inform clinical care for patients and their caregivers, as well as caregivers training and support programs, and even caregiver reimbursement policies. The researchers have published the results of their 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.
Called TBI-CareQOL Measurement System, the researchers hope that the tool could be useful to researchers who want to study caregivers of other patients whose new normal is different from the one they had before and isn't likely to change.
Several TBI survivors suffered their injury in the prime of life, and for others, it happened 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.
The leader of the study, a psychologist, Noelle Carlozzi, Ph.D., the University of Michigan Medical School, said that caregivers of persons with TBI are underserved and overlooked. The medical system treats the patient and sends them home, but behind many of our severely injured patients are family caregivers who have no sufficient training, support or study scientifically.
Carlozzi said that measuring the current state of the caregivers and how it changes over time could be part of the routine clinical care for patients with TBI. How well a caregiver is fairing can affect how well the patient does including medications, therapy, and behavioral health issues.
Carlozzi concluded that they hope that in addition to the TBI-CareQOL being used for research, clinicians will also adopt these measures to screen caregivers during office visits by patients with TBI, and figure out who needs additional services.
