CO034
Fardeau ressenti par les proches aidants à 7 ans d’un traumatisme crânien sévère de l’enfant : résultats de l’étude Traumatisme Grave de L’Enfant (TGE)
Hugo
Câmara Costa
(Paris, France),
Gregorio
Sorrentino
(Paris, France),
Eléonore
Bayen
(Paris, France),
Leila
Francillette
(Saint Maurice, France),
Hanna
Toure
(Saint Maurice, France),
Anne
Laurent-Vannier
(Saint Maurice, France),
Philippe
Meyer
(Paris, France),
Georges
Dellatolas
(Paris, France),
Mathilde
Chevignard
(Saint Maurice, France)
Objective :
Childhood severe traumatic brain injury (TBI) is responsible for significant long-standing impairments (e.g., motor, cognitive, behavioral), that impact all domains of daily life and overall participation. Parents deal with those issues on a day-to-day basis. This study aimed to investigate Primary Family Caregiver-reported burden, 7-years after severe TBI in the TGE (Traumatisme Grave de l’Enfant) prospective longitudinal study.
Material / Patients and Methods :
Subjective burden was estimated with the Zarit Burden Inventory (ZBI) in 36 Primary Family Caregivers (parents), who rated their own health status (Medical Outcome Study Short Form-12), family functioning and their child’s level of care and needs (Pediatric/Adult Care And Needs Scale [PCANS/CANS]). Data collection included: child and parent sociodemographic characteristics, injury-related factors, “objective” (e.g., overall level of disability: Glasgow Outcome Scale–Extended, GOS-E/GOS-E-Peds) and “subjective” (questionnaire-based) outcomes (e.g., participation, behavior, executive functioning, quality of life and fatigue).
Results :
56% of the Primary Family Caregivers reported mild burden, 25% mild-moderate, and 19% moderate-severe. Higher burden was significantly associated with worse outcomes in all “subjective” Primary Family Caregiver-rated outcomes, and with self-reported participation. The ZBI correlated strongly with the CANS/PCANS and the GOS-E/GOS-E-Peds. Overall level of disability and parent-reported executive functioning explained 62% of the ZBI variance. For equal levels of disability, burden was higher when Primary Family Caregiver reported a “negative” picture of his/her child.
Discussion - Conclusion :
Significant subjective Primary Family Caregiver burden 7-years post-injury was associated with overall disability and “subjective” parent-rated outcomes. Factors influencing parental burden in the long term should be identified and psychological support implemented over time.
Keywords :
Informal caregiver, primary family caregiver, severe traumatic brain injury, child, multidimensional burden, prospective cohort study.