Profile of Caregivers and Care Provided for OEF/OIF Veterans Following Acute Rehabilitation for TBI and Polytrauma
Many U.S. service members with severe polytraumatic injuries, including traumatic brain injury (TBI) first receive care at military hospitals, and then are transferred to one of four VA Polytrauma Rehabilitation Centers (PRCs) that specialize in inpatient rehabilitation for multiple injuries. The Family and Caregiver Experience Study (FACES) sought to describe the care and support needs of OEF/OIF Veterans with moderate to severe polytrauma after they received acute rehabilitation – and to describe the providers of that care. Responses were received from 564 primary caregivers of service members with TBI/polytrauma who received inpatient rehabilitation care in a PRC between 2001 and 2009. Caregivers were surveyed between June and December 2009. The survey included questions about both Veterans and caregivers, the time spent providing care, as well as the type of care provided, e.g., assistance with activities of daily living (ADLs, i.e., bathing, feeding) and/or independent activities of daily living (IADLs, i.e., medication management, cooking, driving).
- Care recipients were primarily men (95%). Caregivers were primarily women (79%) and most were under the age of 60 (84%). Typically, the caregiver was a parent (62%) or spouse (32%).
- After a median of four years following injury, 22% of the Veterans still required assistance with both ADLs and IADLs (defined as high-intensity needs). An additional 48% required assistance with IADLs (defined as moderate-intensity needs).
- Overall, nearly 25% of caregivers reported providing more than 40 hours of care per week, and another 20% reported providing 5 to 40 hours of care per week. Almost 50% of caregivers of Veterans with high-intensity needs reported spending 80 or more hours per week providing care.
- Nearly 60% of caregivers were solely responsible for caregiving. Most caregivers also reported providing other types of care (e.g., managing emotions, navigating health or legal systems), and many faced additional demands (e.g., balancing work and caregiving: 55%, caring for children or other dependent adults: 31%).
A significant portion of caregivers provide time-consuming, unpaid care for Veterans, years after injury. Clinicians may need to provide longer-term support, thus policymakers may need to target additional resources to meet the long-term needs of caregivers who may not be eligible for support mandated by the Caregivers and Veterans Omnibus Health Services Act of 2010.
- All respondents were treated as the primary caregiver; however, another family member or friend may have been a more appropriate respondent.
- The survey response rate (67% of caregivers who were successfully contacted by mail or phone) brought into question whether non-responding caregivers were different from responders (e.g., overburdened caregivers without time to respond may have been less likely to respond).
This study was funded by HSR&D (SDR 07-044). Dr. Griffin and Ms. Jensen are part of HSR&D’s Center for Chronic Disease Outcomes Research, Minneapolis, MN.
Griffin JM, Friedemann-Sanchez G, Jensen A, et al. The Invisible Side of War: Families Caring for U.S. Service Members with Traumatic Brain Injuries and Polytrauma. Journal of Head Trauma Rehabilitation 2011 Aug 25;epub ahead of print.