Long-term burden of informal caregiver 7-years after severe childhood traumatic brain injury in the traumatisme grave de l’Enfant (TGE) study

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.

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).

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.

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.

KEYWORDS:

• Informal caregiver
• primary family caregiver
• severe traumatic brain injury
• child
• multidimensional burden
• prospective cohort study

Disclosure statement

The authors report there are no competing interests to declare.

Supplementary material

Supplemental data for this article can be accessed online at https://doi.org/10.1080/02699052.2024.2318588

Additional information

Funding

The initial data collection for the initiation of the cohort study was funded by the Département de la Recherche Clinique et du Développement, AP–HP (Paris, No. PHRC 2003; AOM 03018). The 7-year follow-up study was co-funded by the general direction of health and direction of research, studies, assessment and statistics of the French Ministry of Health, by the national fund for health insurance of salaried workers, the national fund for health insurance of independent workers, the national fund for solidarity and autonomy, and the national institute for prevention and education for health, in the call for research projects launched by the IReSP in 2011. In-depth analyses and manuscript preparation were also funded by the French Speaking Society of Research in Children with Disabilities (SFERHE), the French Traumatic Brain Injury Society (France Traumatisme Crânien - FTC), and the French Speaking Society of Physical Medicine and Rehabilitation (SOFMER).