New studies have found that quality of life is not only important for people with traumatic brain injury (TBI), but for their caregivers as well, according to papers in a special edition of Rehabilitation Psychology that examines quality of life in caregivers of persons with TBI.

The papers in the special issue highlight the research team’s focus on understanding the experiences of caregivers of persons with TBI and illustrate the team’s ability to efficiently capture those experiences through a tool known as TBI-CareQOL Measurement System.

“We developed the TBI-CareQOL tool as a way to have standard measures for quality of life in caregivers of persons with TBI,” said leading author Noelle E. Carlozzi, PhD, in a press release. “We’re able to use the same measures across multiple studies, which allows us to compare and contrast findings to move research forward faster.”

Validated by previous research by Carlozzi and colleagues, the tool possesses the feature to administer surveys as “smart tests.”

“This means the individual only sees the items that are most relevant to them, since the survey administers items based on the respondent’s previous answers,” Carlozzi said in a press release. “This is important because it saves our respondents’ time, as they’re not answering questions that aren’t pertinent to them. It also helps ensure we aren’t collecting unnecessary data, or data that the respondent felt they had to supply an answer to even if it isn’t truly applicable to them.”

The papers included in the special issue utilize the TBI-CareQOL to analyze quality of life in caregivers of both military members and civilians who experience a TBI. Further, the issue highlights the common experiences caregivers of persons with TBI share, as well as experiences and challenges faced by caregivers for military personnel who have experienced TBI.

“We also want to draw attention to the different problems that caregivers encounter,” Carlozzi said in the press release. “While there are certainly a number of common experiences for caregivers of civilians and caregivers of service members and veterans, caregivers of military personnel often feel the need to suppress their emotions, or put on a brave face for others. They often find themselves being constantly on guard trying to protect the person with injury from further harm.”

Carolizzi expressed hope that the work included in the special issue, as well as the little research available to physicians that focuses on the caregiver, demonstrates the need for continued research on this topic. Further, she added that this research will be helpful when finding interventions for caregivers of persons with TBI.

“We need interventions to improve quality of life for caregivers, and this research can lay the groundwork for doing just that,” Carlozzi said in the press release.

Understanding quality of life for caregivers of persons with traumatic brain injury. University of Michigan Medicine. Published November 24, 2020. Accessed December 4, 2020.