A new tool seeks to give a voice to the family caregivers of patients with traumatic brain injury (TBI). These caregivers often 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 TBI caregivers, the tool provides a new standard way to measure the physical, mental and emotional effects of caring for survivors of TBI.
“Caregivers of persons with TBI are underserved and overlooked,” said 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.”
The researchers hope the tool, called TBI-CareQOL Measurement System, can form the basis for a new wave of research that could lead to better support for both patients and their caregivers, as well as result in caregiver training and support programs, and even caregiver reimbursement policies.
The new tool measures a caregiver’s current mental and health states, as well as how these states change over time. How well a caregiver is faring can also affect how well the patient does, for instance with therapy, medications and behavioral health issues.
The tool includes measures of:
- how much of a sense of loss the caregiver feels for themselves or the loved one they’re caring for;
- how much anxiety they feel about their ability to tend to their loved one’s needs;
- how trapped they feel in their role as caregiver, and;
- how much strain the daily demands of their loved one’s care places on them, including feelings of being stressed, overwhelmed or even downtrodden by caregiver responsibilities.
Many TBI patients sustained 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.
To develop the tool, the research team worked with 560 caregivers who took care of 344 civilians and 216 military service members or veterans who had suffered a TBI more than a year earlier.
The researchers also got permission to look at the medical records of the patients the caregivers were taking care of, so they could know the severity of the injury and other information.
“We hope that in addition to the TBI-CareQOL being used for research, clinicians will adopt these measures to screen caregivers during office visits by patients with TBI, and figure out who needs additional services,” said Carlozzi. She noted caregivers usually attend their loved ones’ appointments because patients with TBI can have trouble remembering or accurately reporting what their clinicians said or recommended.
In upcoming papers, the research team will report their findings from measures related to disruption of family life — a topic that has special importance to military and veteran caregivers, who often have young children to care for at the same time they’re caring for a TBI-survivor spouse. They also hope to do more to measure sleep and activity levels in caregivers.
The results of a rigorous evaluation of the tool are now published in a special supplement to the journal Archives of Physical Medicine and Rehabilitation.