Traumatic brain injury (TBI) is a leading cause of long-term disability, affecting over 2.8
million individuals annually in the United States and over 458,000 military personnel
since the year 2000. TBI has been described as an invisible disability because TBI
causes substantial cognitive impairments without overt physical evidence of injury. 45
During the chronic recovery stage, 48%-50% of Veterans and Service Members (V/SM)
needed assistance with coordinating and accessing medical services. The need for a
health care proxy to help access and coordinate health services is likely influenced by
unmet need for cognitive assistance, reported by 61-70% of V/SM followed 1-5 years
post-TBI. Cognitive functioning and supervision needs of persons with TBI are not
stagnant, and indeed fluctuate over time, which further complicates healthcare service
delivery. Environmental factors, such as institutional policies and clinical provider
attitudes, serve as barriers to addressing health care access and coordination needs.
Research shows that the involvement of a health care proxy (often a family member)
has been found to improve access to services and health outcomes among cognitive
impaired persons with TBI. However, outside these settings, family or other health care
proxies may be excluded from healthcare encounters when providers are unaware that
TBI-related cognitive impairments limit the patient’s ability to independently engage,
retain information, and adhere to treatments. Unfortunately, 37% of caregivers of
persons with TBI reported they were excluded from health care to the detriment of
their loved ones. Consequently, other providers are unaware of these needs, placing
the burden of identifying and accommodating cognitive impairment on clinicians with
limited time and resources.