Patients' and relatives' experience of difficulties following severe traumatic brain injury: The sub-acute stage

Abstract

The present study aimed to (1) identify the difficulties most frequently reported by individuals with severe traumatic brain injury (TBI) at the time of discharge from a sub-acute rehabilitation brain injury unit as well as difficulties reported by their relatives, (2) compare patients' and relatives' reports of patient difficulties, and (3) explore the role of injury severity, disability and other factors on subjective experience of difficulties. The primary measure was the European Brain Injury Questionnaire (EBIQ) administered to patients and to one of their close relatives at discharge. Results from 52 patients and 50 relatives indicate that the most frequent complaints in both groups related to somatic and cognitive problems. Relatives reported significantly more difficulties than patients on all subscales of the EBIQ. However, the level of complaints in both patients and relatives was low compared to other studies using the EBIQ. Furthermore, the effects of injury severity and general level of functioning had limited impact on the subjective experience of difficulties. Implications of these findings, specifically as they pertain to the sub-acute stage are discussed.

An Actor-Partner Interdependence Model of Acquired Brain Injury Patient Impairments and Caregiver Psychosocial Functioning: A Dyadic-Report, Multinational Study

“…In the current study, patients and caregiver ratings were positively correlated with each other, indicating a similar perception of patients’ impairments. This is in contrast to previous studies that have revealed a discrepancy between patients’ and relatives’ view of difficulties (Holm, Schonberger, Poulsen, & Caetano, ; Teasdale et al., ). However, the present study was conducted with a mean time since injury of 26 months, and the time interval since injury is very likely to affect both patients’ and relatives’ perception of difficulties.…”

Reporting of neuropsychological dysfunction remains discrepant between individuals with traumatic brain injury and their close others up to five years post-injury

“…[10][11][12] Discrepancy of reporting between individuals with TBI and their significant others has been used by numerous researchers as a proxy to measure reduced self-awareness of deficits following TBI. As noted above, close other reporting is significantly influenced by a range of social and emotional factors, [7][8][9] which questions the validity of using close other reports as a measure of 'true impairment'. Nevertheless, the self-awareness literature provides some important insights relevant to the current study.…”

“…[5,6] There is a general assumption that close other reports are more reliable indicators of traumatic brain injury (TBI)-related difficulties, particularly in people with moderate to severe injuries who may lack self-awareness. However, research has shown that factors such as close other mood, [7] caregiver strain [8] and time spent with patients [9] are associated with close other reporting. Perhaps due to these above factors, it is possible that individuals with TBI and their close others may not share a common experience or understanding of post-injury neuropsychological changes.…”

A Patient-guided Measure of Functional Status Following Traumatic Brain Injury: The Bob Brown Scale

“…Research speci c to TBI identi es subjective factors that appear to in uence patients' objective functional status, including perception of autonomy, 24 "sense of self", 25 depression, 26 self-awareness, [27][28][29] subjective experience of di culties, 30 and self-reported "psychosocial status" 31 (global representation of subjective and objective function). Given this, we assert that patient and family/caregiver experience should guide the development of instruments for assessment of outcomes and post-injury functional status.…”