@article{ref1,
title="Long-term burden of informal caregiver 7-years after severe childhood traumatic brain injury in the traumatisme grave de l'Enfant (TGE) study",
journal="Brain injury",
year="2024",
author="Sorrentino, Gregorio and Bayen, Eleonore and Câmara-Costa, Hugo and Francillette, Leila and Toure, Hanna and Laurent-Vannier, Anne and Meyer, Philippe and Dellatolas, Georges and Chevignard, Mathilde",
volume="ePub",
number="ePub",
pages="ePub-ePub",
abstract="OBJECTIVE: To investigate reported burden by the Primary Family Caregiver (PFC) 7-years after severe pediatric traumatic brain injury in the TGE (Traumatisme Grave de l'Enfant) longitudinal study. <br><br>METHODS: Subjective burden was estimated with the Zarit Burden Inventory (ZBI) in 36 PFC (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 PFC sociodemographic characteristics, injury-related factors, 'objective' (e.g. overall level of disability: Glasgow Outcome Scale - Extended, GOS-E/GOS-E-Peds) and 'subjective' outcomes (e.g. participation, behavior, executive functions, quality of life and fatigue). <br><br>RESULTS: 25% of PFC reported mild-moderate burden, and 19% moderate-severe burden. Higher burden correlated with worse outcomes in all 'subjective' PFC-rated outcomes, and with self-reported participation. The ZBI correlated strongly with CANS/PCANS and GOS-E/GOS-E-Peds. Overall level of disability and PFC-reported executive functioning explained 62% of the ZBI variance. For equal levels of disability, burden was higher when PFC reported a 'negative' picture of their child. <br><br>CONCLUSION: Significant PFC-reported burden 7-years post-injury was associated with overall disability and 'subjective' PFC-rated outcomes. Factors influencing parental burden in the long term should be identified and psychological support implemented over time.<p /> <p>Language: en</p>",
language="en",
issn="0269-9052",
doi="10.1080/02699052.2024.2318588",
url="http://dx.doi.org/10.1080/02699052.2024.2318588"
}