Objective and Subjective Burden of Informal Caregivers 4 Years After a Severe Traumatic Brain Injury: Results From the PariS-TBI Study

Abstract

Four years after a severe traumatic brain injury, 44% of ICs experienced a heavy multidimensional burden.

Patterns of change and stability in caregiver burden and life satisfaction from 1 to 2 years after severe traumatic brain injury: A Norwegian longitudinal study

“…In addition, burden increased more frequently among caregivers with a moderate-to-high as compared to a low burden at the 1-year follow-up. One study found no significant change in caregiver burden between 6 and 12 months post-injury (Marsh et al, 2002), whereas the PariS-TBI study found a decrease in burden at 4 as compared to 1 year (Bayen et al, 2014;Bayen et al, 2013). However, the latter investigators did not compare the same population at the two time points; this along with the longer time span post-injury and differences in analytical approaches could explain the discrepancy between their results and ours.…”

“…The French PariS-TBI study reported a decrease in caregiver burden from 1 to 4 years post-injury (Bayen et al, 2014;Bayen et al, 2013). Among 57 caregivers of patients with severe TBI, the perceived level of burden was high at the 3-, 6-and 12-months follow-up times, with a slight increase between 6 and 12 months (M. G. Livingston et al, 1985).…”

“…There is strong evidence to suggest that burden is correlated with patient´s neurobehavioral problems (Bayen et al, 2014;Bayen et al, 2013;Kreutzer et al, 1994) and level of functioning (Boycott et al, 2013;Brooks et al, 1986;Kreutzer et al, 2009;Manskow et al, 2015). Social network is a broad concept that includes all social resources available to an individual, including interpersonal ties, health resources, and professional support, and the concept can also be defined more narrow as the individuals' social network (A. G. Anke et al, 1997;Gottlieb & Bergen, 2010).…”

Informal care management after traumatic brain injury: perspectives on informal carer workload and capacity

“…The work associated with living with TBI in the community is multi-faceted and potentially burdensome (i.e., workload) [16,17]. Several factors impact this workload, including the complexity of TBI, which is unique to each person [18].…”

Family-oriented interventions for adults with acquired brain injury and their families: a scoping review protocol

“…It may vary according to the degree of severity of functional disorder and the patients' autonomy in ADL. [16][17][18][19] Family members of patients with ABI often report poor family functioning, which does not improve with time. [20][21][22] Supporting families of patients with ABI may include various interventions modalities, such as support groups for family members of patients requiring intensive care, communication interventions, and/or flexible visiting hours.…”