GDIT’s Defiense and Veterans Brain Injury Center (DVBIC) contract No. W91YTZ-13-C-015

Project: Research project

Project Details

Description

Caregivers of individuals with traumatic brain injury (TBI) undergo considerable stress1 that negatively impacts their health-related quality of life (HRQOL), a multidimensional construct reflecting the impact of a disease, disability, or its treatment, on mental, physical, and social well-being.2 Negative sequelae for caregivers of individuals with TBI include depression and anxiety,3-7 disruption of family systems,3 decreased marital satisfaction and longevity,8,9 social isolation, 4,5,10,11 increased need for mental health services,12 and increased use of alcohol and other drugs.12,13 In addition, caregiver stress is related to poorer outcomes for the patients themselves.14-21 Despite the clear evidence for negative outcomes for caregivers and the patients they care for, caregivers remain a significantly underserved population.22 Although some work has been conducted with caregivers of individuals with TBI, these individuals are often overlooked due to the immediate treatment needs of the individual with the TBI.

Caregivers of individuals with military-related TBI are part of this underserved population,23 a fact highlighted by the recent Congressional mandate to prioritize research on family members of individuals returning with TBI from Operation Iraqi Freedom and Operation Enduring Freedom (OIF/OEF).23 In addition to the symptoms that caregivers of civilian-TBI face (highlighted above),24 caregivers of military-TBI experience additional deployment-related stressors.25-28 Recent attention to caregiver stress prompted by the Congressional mandate highlights our limited understanding of the importance of HRQOL in caregivers of individuals with civilian- or military-TBIs.

Our understanding of the experience of caregivers is greatly limited by the fact that there are no measures of HRQOL that are specific to caregivers of civilian-TBI or military-TBI. To this end, our team has been working on developing new measures of HRQOL that are specific to caregivers of individuals with TBI. To date, we have funding to develop new measures that are relevant to the generic issues that both civilian- and military-caregivers face (this work is underway). While this work is important, it still neglects to capture the unique challenges that are unique to military-caregivers of TBI. Specifically, our previous work with military-caregivers of TBI have highlighted the diverse ways in which caring for someone with a military-TBI can affect HRQOL.29 For example, qualitative frequency analysis indicated that caregivers most frequently discussed social health (44% of comments), followed by emotional (40%) and physical health (12%). Areas of discussion that were specific to these military caregivers included: anger regarding barriers to health services (for caregivers and service members), emotional suppression (putting on a brave face for others, even when things are not going well), and hypervigilance (controlling one’s behavior/environment to prevent upsetting the service member).29 Unfortunately no such measure exists to capture this information.

We have developed new military-TBI-caregiver-specific item pools to capture caregiver vigilance, emotional suppression, and how anger and perceived barriers to services (caregiver anger – services) impact HRQOL in these individuals. This work has been conducted according to state-of-the-art methodological patient reported outcome (PRO) measurement development standards30 and lays the foundation for an important military-TBI-caregiver-specific PRO measure. More work is needed to field test and
StatusFinished
Effective start/end date9/26/173/24/19

Funding

  • University of Michigan (W91YTZ-13-C-0015//3004730431)
  • Department of the Army (W91YTZ-13-C-0015//3004730431)

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