Self-Awareness after Traumatic Brain Injury (TBI) in Children and Adolescents: Associated Factors and Relationship to Outcomes

Abstract

Self-awareness, or the ability to accurately appraise one’s own abilities, has been found to be an important predictor of community integration outcomes in adults with traumatic brain injury (TBI). Yet, there has been little research on self-awareness following TBI in childhood or adolescence. Comprised of four studies, the broad objectives of this thesis were to critically review existing evidence and to advance understanding of self-awareness following paediatric TBI, factors related to selfawareness, and associations between self-awareness and psychosocial outcomes. Study 1 was a systematic review of research on self-awareness following TBI in children and adolescents. Seven databases were searched to identify eligible studies involving children or adolescents with TBI that measured awareness of deficits and reported quantitative data. Overall, 12 studies yielded mixed evidence concerning the presence of deficits in self-awareness after paediatric TBI. However, deficits in selfawareness were most evident for memory, executive function and communication impairments following moderate to severe TBI. The review highlighted gaps in research concerning factors related to self-awareness following paediatric TBI, the trajectory of development post-injury, and the relationship of self-awareness to functional and psychosocial outcomes. The review also highlighted a lack of validated measures for assessing self-awareness across multiple domains of functioning after paediatric TBI. Informed by the systematic review, the Paediatric Awareness Questionnaire (PAQ) was developed. Study 2 examined the psychometric properties of the PAQ, as well as undertaking a preliminary investigation of factors related to self-awareness. The PAQ was administered to 32 children aged 8-16 years with mild to severe TBI (72% male, M age = 11.75, SD = 2.9), their parents, and treating clinicians, and to 32 age- and gender-matched typically developing controls and their parents. Children with TBI and their parents also completed the Knowledge of Injury Checklist (KIC). The PAQ was found to have fair to excellent internal consistency (α = .79-.97) for all versions in both samples, with good concordance between parent and clinician total scores (ICC = .78). There was evidence of convergent validity between the PAQ and KIC for both child (r = -.45, p < .05) and parent ratings (r = -.66, p < .001). Poorer self-awareness (i.e., more negative parent-child discrepancy scores) was significantly related to younger age at injury for the TBI group and lower parental education for the total sample. Children with TBI demonstrated significantly poorer self-awareness than controls after controlling for parental education. On average, children with TBI overestimated their functioning compared to their parents, whereas typically developing children tended to rate their functioning lower than their parents. These findings provided preliminary support for the reliability and validity of the PAQ for assessing self-awareness after paediatric TBI. Study 3 was a cross-sectional study that aimed to identify neuro-developmental and socio-environmental factors associated with self-awareness and to examine the relationship between self-awareness and psychosocial outcomes. An independent sample of 107 children with TBI aged 8-16 years (65.4% male, M age = 12.66 years, SD = 2.6 years) and their parents were consecutively recruited through an outpatient clinic over a 4-year period. Children completed the PAQ and the Beck Youth Inventories (BYI-2), and parents completed the PAQ, Adaptive Behaviour Assessment System- Third Edition (ABAS-3), McMaster Family Assessment Device (FAD), Parenting Practices Questionnaire (PPQ), and Child Behavior Checklist (CBCL). Poorer selfawareness was significantly associated with younger age at injury, more severe TBI and greater family dysfunction. Children with poorer self-awareness had significantly lower adaptive function and greater behavioural problems, as rated by their parents. However, poorer self-awareness was significantly associated with more positive self-concept and fewer symptoms of depression and anxiety as rated by children. Overall, the findings indicated that impaired self-awareness can be a liability or protective factor depending on rater perspective (parent or child) and the outcome of interest (adaptive function/behaviour or self-concept/mood). Study 4 validated the domains assessed by the PAQ and investigated deficits in self-awareness for children with acquired brain injury (ABI). A sample of 197 children and adolescents (8-16 years; M = 12.44, SD = 2.62) with mixed causes of ABI (70% with TBI) and their parents (n = 197) completed the PAQ. Principal components analysis (PCA) with varimax rotation was undertaken on the 37-item parent version of the PAQ. Based on a five-component solution (29 items) that explained 64% of the variance in the PAQ items, the self-awareness domains were labelled socio-emotional functioning, activities of daily living (ADLs), cognition, physical functioning, and communication. Children were found to have significantly poorer self-awareness of cognitive functioning than socio-emotional functioning, ADLs, and communication skills. The findings provide preliminary support for the validity of the PAQ as a multidomain measure of self-awareness. Overall, these findings support the reliability and validity of the PAQ for measuring self-awareness after paediatric TBI. Key novel findings were that children injured at a younger age and those with more severe TBI are at greater risk of having impaired self-awareness following paediatric TBI. Further, the finding that better selfawareness was associated with greater adaptive functioning and behaviour highlights the importance of future research developing and evaluating developmentally appropriate self-awareness interventions, with a particular focus on self-awareness of cognitive functioning. However, based on the finding that greater self-awareness was associated with increased mood symptoms and more negative self-concept, it is recommended that children’s psychological well-being be closely monitored and supported within programs that aim to improve self-awareness.