Objective and Subjective Burden of Informal Caregivers 4 Years After a Severe Traumatic Brain Injury: Results From the PariS-TBI Study

• Published in: The journal of head trauma rehabilitation Vol. 31; no. 5; p. E59
• Main Authors: Bayen, Eléonore, Jourdan, Claire, Ghout, Idir, Darnoux, Emmanuelle, Azerad, Sylvie, Vallat-Azouvi, Claire, Weiss, Jean-Jacques, Aegerter, Philippe, Pradat-Diehl, Pascale, Joël, Marie-Eve, Azouvi, Philippe
• Format: Journal Article
• Language: English
• Published: United States 01.09.2016
• Subjects: Adult; Brain Injuries, Traumatic - nursing; Caregivers - psychology; Cost of Illness; Female; France; Glasgow Outcome Scale; Humans; Longitudinal Studies; Male; Multivariate Analysis; Prospective Studies
• ISSN: 1550-509X
• DOI: 10.1097/HTR.0000000000000079

Prospective assessment of informal caregiver (IC) burden 4 years after the traumatic brain injury of a relative. Longitudinal cohort study (metropolitan Paris, France). Home dwelling adults (N = 98) with initially severe traumatic brain injury and their primary ICs. Informal caregiver objective burden (Resource Utilization in Dementia measuring Informal Care Time [ICT]), subjective burden (Zarit Burden Inventory), monetary self-valuation of ICT (Willingness-to-pay, Willingness-to-accept). Informal caregivers were women (81%) assisting men (80%) of mean age of 37 years. Fifty-five ICs reported no objective burden (ICT = 0) and no/low subjective burden (average Zarit Burden Inventory = 12.1). Forty-three ICs reported a major objective burden (average ICT = 5.6 h/d) and a moderate/severe subjective burden (average Zarit Burden Inventory = 30.3). In multivariate analyses, higher objective burden was associated with poorer Glasgow Outcome Scale-Extended scores, with more severe cognitive disorders (Neurobehavioral Rating Scale-revised) and with no coresidency status; higher subjective burden was associated with poorer Glasgow Outcome Scale-Extended scores, more Neurobehavioral Rating Scale-revised disorders, drug-alcohol abuse, and involvement in litigation. Economic valuation showed that on average, ICs did not value their ICT as free and preferred to pay a mean Willingness-to-pay = 17 per hour to be replaced instead of being paid for providing care themselves (Willingness-to-accept = 12). Four years after a severe traumatic brain injury, 44% of ICs experienced a heavy multidimensional burden.