Research Reports - Objective and subjective burden of caregivers 4 years after a traumatic brain injury

J Head Trauma Rehabil. 2014 Jul 2

Bayen E(1), Jourdan C, Ghout I, Darnoux E, Azerad S, Vallat-Azouvi C, Weiss JJ, Aegerter P, Pradat-Diehl P, Joël ME, Azouvi P

OBJECTIVE:: Prospective assessment of informal caregiver (IC) burden 4 years
after the traumatic brain injury of a relative.
SETTING:: Longitudinal cohort study (metropolitan Paris, France).
PARTICIPANTS:: Home dwelling adults (N = 98) with initially severe traumatic
brain injury and their primary ICs.
MAIN OUTCOME MEASURES:: 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).
RESULTS:: 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 =
&OV0556;17 per hour to be replaced instead of being paid for providing care
themselves (Willingness-to-accept = &OV0556;12).
CONCLUSION:: Four years after a severe traumatic brain injury, 44% of ICs
experienced a heavy multidimensional burden.

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