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Objective and Subjective Burden of Informal Caregivers 4 Years After a Severe Traumatic Brain Injury: Results From
Eléonore Bayen1, Claire Jourdan, Idir Ghout
1AP-HP, Groupe Hospitalier Pitié-Salpêtrière, Service de Médecine Physique et Réadaptation, Paris, France (Drs Bayen and Pradat-Diehl); Université Paris-Dauphine, LEDa-LEGOS Laboratoire d'Economie et de Gestion des Organisations de Santé, Paris, France (Drs Bayen and Joël); Université Pierre et Marie Curie, ER 6, Paris, France (Drs Pradat-Diehl and Vallat-Azouvi); AP-HP, Hôpital R. Poincaré, Service de Médecine Physique et Réadaptation, Garches, France (Drs Jourdan, Vallat-Azouvi, and Azouvi); Université de Versailles St-Quentin, EA 4497, Guyancourt, France (Drs Jourdan and Azouvi); AP-HP, Hôpital A. Paré, Unité de Recherche Clinique Paris-Ouest, Boulogne-Billancourt, France (Mr Ghout, Ms Azerad, and Dr Aegerter); Université de Versailles St-Quentin, UPRES EA 2506, Guyancourt, France (Dr Aegerter); and Centre Ressources Francilien du Traumatisme Crânien, Paris, France (Ms Darnoux and Dr Weiss).
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.