Objectives: : To (1) identify informal caregivers to injured US service members following acute rehabilitation for polytraumatic injuries, principally traumatic brain injury (TBI), and (2) describe the prevalence and variation of care recipient and caregiver experiences.
Design: : Cross-sectional survey of caregivers.
Participants: : Caregivers (N = 564) of service members with TBI who received inpatient rehabilitation care in a Veterans Affairs' Polytrauma Rehabilitation Center between 2001 and 2009.
Main outcome measures: : Questions about caregiver and patient characteristics, type, and quantity of care currently being provided.
Results: : Caregiving responsibilities fall primarily on women (79%), typically a parent (62%) or spouse (32%). After a median 4 years since injury, 22% of patients still required assistance with activities of daily living and instrumental activities of daily living. An additional 48% required assistance with only instrumental activities of daily living. Nearly 25% of caregivers reported more than 40 h/wk of care and another 20% reported 5 to 40 h/wk of care. Of caregivers providing assistance with activities of daily living, 49% provided care ≥ 80 h/wk. Nearly 60% of caregivers were solely responsible for the caregiving. Most caregivers also reported providing other help, including managing emotions and navigating health and legal systems.
Conclusions: : Caregivers who provide assistance with either activities of daily living or instrumental activities of daily living may need additional resources to meet the long-term needs of their injured family member.