The research landscape has changed dramatically over recent decades with the evergrowing opportunities facilitated by increasingly sophisticated technologies and statistical approaches, and complexity of governance and funding requirements, coupled with a relatively recent acknowledgement of the need to consider the impact of what we study and whether it addresses concerns that are shared by patients and consumers.

Over the past 20 years, the Melbourne Children's Brain and Mind team has followed children from the time of their brain injury as they have moved from infancy and childhood, through adolescence and into adulthood. With a backdrop of the myriad of changes in research approaches, over the life of this study, this presentation will describe the challenges and findings generated from our work and consider how key research questions have changed, whether the work has been impactful at a scientific and if it has impacted the outcomes of brain injury survivors.

Finally, given the critical importance of researchers, at any stage of their career, in the successful conduct of programs such as ours, learnings regarding ingredients supporting successful research careers will also be explored.

Objectives: Children with acquired brain injury (ABI) can present with disruptive behavior, which is often a consequence of injury and parent factors. Parent factors are associated with child disruptive behavior. Furthermore, disinhibition in the child also leads to disruptive behavior. However, it is unclear how these factors interact. We investigated whether parental factors influence child disruptive behavior following ABI and how these factors interact. Methods: Parents of 77 children with ABI participated in the study. Parent factors (executive dysfunction, trait-anxiety), potential intervention targets (dysfunctional parenting practices, parental stress, child disinhibition), and child disruptive behavior were assessed. A hypothetical model based on the literature was tested using mediation and path analysis. Results: Mediation analysis revealed that child disinhibition and dysfunctional parenting practices mediated the association of parent factors and child disruptive behavior. Parents’ executive dysfunction mediated the association of dysfunctional parenting practices, parental stress and parent trait-anxiety. Parenting practices mediated the association of executive dysfunction and child disruptive behavior. Path analysis indices indicated good model adjustment. Comparative and Tucker-Lewis Index were >0.95, and the root mean square error of approximation was 0.059, with a chi-square of 0.25. Conclusions: A low level of parental trait-anxiety may be required to reduce dysfunctional parenting practices and child disinhibition. Impairments in child disinhibition can be exacerbated when parents present with high trait-anxiety. Child disinhibition is the major contributor of disruptive behavior reported by parents and teachers. The current study provides evidence of parent anxiety and child disinhibition as possible modifiable intervention targets for reducing child disruptive behavior. (JINS, 2019, 25, 237–248)

Objectives: Agenesis of the corpus callosum (AgCC), characterized by developmental absence of the corpus callosum, is one of the most common congenital brain malformations. To date, there are limited data on the neuropsychological consequences of AgCC and factors that modulate different outcomes, especially in children. This study aimed to describe general intellectual, academic, executive, social and behavioral functioning in a cohort of school-aged children presenting for clinical services to a hospital and diagnosed with AgCC. The influences of age, social risk and neurological factors were examined. Methods: Twenty-eight school-aged children (8 to 17 years) diagnosed with AgCC completed tests of general intelligence (IQ) and academic functioning. Executive, social and behavioral functioning in daily life, and social risk, were estimated from parent and teacher rated questionnaires. MRI findings reviewed by a pediatric neurologist confirmed diagnosis and identified brain characteristics. Clinical details including the presence of epilepsy and diagnosed genetic condition were obtained from medical records. Results: In our cohort, ~50% of children experienced general intellectual, academic, executive, social and/or behavioral difficulties and ~20% were functioning at a level comparable to typically developing children. Social risk was important for understanding variability in neuropsychological outcomes. Brain anomalies and complete AgCC were associated with lower mathematics performance and poorer executive functioning. Conclusions: This is the first comprehensive report of general intellectual, academic, executive social and behavioral consequences of AgCC in school-aged children. The findings have important clinical implications, suggesting that support to families and targeted intervention could promote positive neuropsychological functioning in children with AgCC who come to clinical attention. (JINS, 2018, 24, 445–455)

Objectives: Fatigue is a common and persisting symptom after childhood brain injury. This study examined whether child characteristics and symptomatology preinjury or 6 months postinjury (pain, sleep, and mood, inattention) predicted fatigue at 12months postinjury. Methods: Parents of 79 children (0–18 years) rated fatigue at 12 months after injury on a multidimensional scale (general, sleep/rest, and cognitive). Demographic and clinical data were collected at injury. Parents rated child sleep, pain, physical/motor function, mood, and inattention at injury (preinjury description), and 6 months postinjury. Children were divided into two traumatic brain injury severity groups: mild TBI (n=57) and moderate/severe TBI (n=27). Hierarchical regression models were used to examine (i) preinjury factors and (ii) symptoms 6 months postinjury predictive of fatigue (general, sleep/rest, and cognitive) at 12 months postinjury. Results: Sleep/rest fatigue was predicted by preinjury fatigue (7% of variance) and psychological symptoms preinjury (10% of variance). General fatigue was predicted by physical/motor symptoms (27%), sleep (10%) and mood symptoms (9%) 6 months postinjury. Sleep/rest fatigue was predicted by physical/motor symptoms (10%), sleep symptoms (13%) and mood symptoms (9%) 6 months postinjury. Cognitive fatigue was predicted by physical/motor symptoms (17%) 6 months postinjury. Conclusions: Preinjury fatigue and psychological functioning identified those at greatest risk of fatigue 12 months post-TBI. Predictors of specific fatigue domains at 12 months differed across each of the domains, although consistently included physical/motor function as well as sleep and mood symptoms postinjury. (JINS, 2018, 24, 224–236)

Objectives: This study examined whether children with distinct brain disorders show different profiles of strengths and weaknesses in executive functions, and differ from children without brain disorder. Methods: Participants were children with traumatic brain injury (N=82; 8–13 years of age), arterial ischemic stroke (N=36; 6–16 years of age), and brain tumor (N=74; 9–18 years of age), each with a corresponding matched comparison group consisting of children with orthopedic injury (N=61), asthma (N=15), and classmates without medical illness (N=68), respectively. Shifting, inhibition, and working memory were assessed, respectively, using three Test of Everyday Attention: Children’s Version (TEA-Ch) subtests: Creature Counting, Walk-Don’t-Walk, and Code Transmission. Comparison groups did not differ in TEA-Ch performance and were merged into a single control group. Profile analysis was used to examine group differences in TEA-Ch subtest scaled scores after controlling for maternal education and age. Results: As a whole, children with brain disorder performed more poorly than controls on measures of executive function. Relative to controls, the three brain injury groups showed significantly different profiles of executive functions. Importantly, post hoc tests revealed that performance on TEA-Ch subtests differed among the brain disorder groups. Conclusions: Results suggest that different childhood brain disorders result in distinct patterns of executive function deficits that differ from children without brain disorder. Implications for clinical practice and future research are discussed. (JINS, 2017, 23, 529–538)

Childhood and adolescence coincide with rapid structural and functional maturation of brain networks implicated in Theory of Mind (ToM); however, the impact of paediatric traumatic brain injury (TBI) on the development of these higher order skills is not well understood. ToM can be partitioned into conative ToM, defined as the ability to understand how indirect speech acts involving irony and empathy are used to influence the mental or affective state of the listener; and affective ToM, concerned with understanding that facial expressions are often used for social purposes to convey emotions that we want people to think we feel. In a sample of 84 children with mild-severe TBI and 40 typically developing controls, this study examined the effect of paediatric TBI on affective and conative ToM; and evaluated the respective contributions of injury-related factors (injury severity/lesion location) and non-injury-related environmental variables (socio-economic status (SES)/family functioning) to long-term ToM outcomes. Results showed that the poorest ToM outcomes were documented in association with mild-complicated and moderate TBI, rather than severe TBI. Lesion location and SES did not significantly contribute to conative or affective ToM. Post-injury family affective responsiveness was the strongest and most significant predictor of conative ToM. Results suggest that clinicians should exercise caution when prognosticating based on early clinical indicators, and that group and individual-level outcome prediction should incorporate assessment of a range of injury- and non-injury-related factors. Moreover, the affective quality of post-injury family interactions represents a potentially modifiable risk factor, and might be a useful target for family-centred interventions designed to optimise social cognitive outcomes after paediatric TBI.

The aim of this study was to evaluate attention difficulties in a contemporary geographic cohort of adolescents born extremely preterm (EP, <28 weeks’ gestation) or extremely low birth weight (ELBW, birth weight <1000 g). The EP/ELBW group included 228 adolescents (mean age = 17.0 years) born in Victoria, Australia in 1991 and 1992. The control group were 166 adolescents (mean age = 17.4 years) born of normal birth weight (birth weight >2499 g) who were recruited in the newborn period and matched to the EP/ELBW group on date of birth, gender, language spoken and health insurance status. Participants were assessed on measures of selective, sustained, and executive (shift and divided) attention, and parents and participants completed behavioral reports. The EP/ELBW group performed more poorly across tests of selective and executive attention, had greater rates of clinically significant difficulties compared with the control group, and also had greater behavioral attention problems as reported by parents. Neonatal risk factors were weakly associated with attention outcomes. In conclusion, higher rates of attention impairments are observed in individuals born EP/ELBW well into adolescence and may have consequences for their transition to adulthood. (JINS, 2013, 19, 1–12)

Objective: The aim of this study was to explore the acute psychosocial risk in families with infants undergoing surgery for a congenital heart disease and, secondarily, to explore the psychosocial impact of antenatal versus post-natal diagnoses. Method: The study sample comprised 39 caregivers (28 mothers) of 29 children diagnosed with a congenital heart disease and requiring surgery within the first 4 weeks of life. Psychosocial risk was measured using the Psychosocial Assessment Tool, which was adapted to include four novel items examining infant risk factors, namely, sleeping, feeding, crying, and bonding difficulties. Parents’ psychosocial risk was measured within 4 weeks after their child's surgery and stratified into a three-tiered framework: Universal, Targeted, and Clinical risk. Results: Of the total sample, 61.5% of parents were classified as Universal, that is, at lowest risk; 35.9% as Targeted, and 2.6% as Clinical. The within-family parent total Psychosocial Assessment Tool score correlations were non-significant, and there were no differences between families of infants who received post-natal versus antenatal diagnosis or single ventricle versus biventricular repair. Linear regression found that a higher parent education significantly predicted a lower total Psychosocial Assessment Tool score. Conclusions: Findings indicate that, although the majority of parents adapt to the acute stress of surgery for a serious cardiac illness in their infant, the remaining 38.5% report an increased psychosocial risk associated with higher rates of emotional distress, which may impact on the parental quality of life and capacity for optimal parenting. The distribution of psychosocial risk in parents of children undergoing surgery for a congenital heart disease is consistent with that described for parents of children with other serious paediatric diagnoses.

Children with traumatic brain injury (TBI) are at risk for social impairment. This study aimed to examine social function at 6 months post-TBI and to explore the contribution of injury, cognitive, and environmental influences. The sample included 136 children, 93 survivors of TBI, and 43 healthy controls. TBI participants were recruited on admission and underwent magnetic resonance imaging scan within 8 weeks of injury and behavioral assessment at 6 months post-injury. Healthy controls underwent magnetic resonance imaging scans and behavioral assessment on recruitment. Assessment included parent and child questionnaires tapping social outcome and child-direct testing of cognitive abilities important for social competence (communication, attention/executive function, social cognition). Injury characteristics and environmental measures were collected. At 6-months post-injury, social problems were evident, but not global. Social participation appeared most vulnerable, with more severe injuries leading to greater problems. Greater injury severity and poorer communication skills were associated with poorer social adjustment and social participation, with the impact of family function also significant. Processing speed, younger age, and male gender also contributed to social outcomes. Further follow-up is required to track the recovery of social skills and the changing influences of cognition, brain, and environment over time. (JINS, 2013, 19, 1–12)

Severe traumatic brain injury (TBI) is the most common cause of brain injury in the Western world and leads to physical, cognitive and emotional deficits that reduce independence. Changes to psychosocial function are the most disruptive, resulting in vocational difficulties, family stress and deteriorating relationships, and are a major target for remediation. But rehabilitation is expensive and its evidence base is limited. Thus, new collaborative initiatives are needed. This article details the development of ‘Moving Ahead’, a model for a Centre of Research Excellence (CRE) for Traumatic Brain Injury Rehabilitation. This CRE offers several major innovations. First, it provides an integrated, multi-faceted approach to addressing psychosocial difficulties embracing different clinical standpoints (e.g., psychological, speech pathology, occupational therapy) and levels of investigation (e.g., basic science to community function) across the lifespan. It is based upon a close relationship with clinicians to ensure transfer of research to practice and, conversely, to ensure that research is clinically meaningful. It provides an integrated platform with which to support and train new researchers in the field via scholarships, postdoctoral fellowships, websites, meetings, mentoring and across-site training, and thus build workforce capacity for individuals with TBI and their families. It has input from the international community to contextualise research more broadly and ensure scientific rigour. Finally, it provides collaboration across sites to facilitate research and data collection.

Purpose: Traumatic brain injury (TBI) often leads to executive functions deficits, which may be responsible for severe and longstanding disabilities in everyday activities. Sensitivity and ecological validity of neuropsychological tests of executive functions have been questioned. The aims of this study were to pilot an ecological open-ended assessment of executive functions in children, the ‘Children's Cooking Task’ (CCT), specifically to report its reliability, discriminant validity and concurrent validity. Methods: Twenty-five children with mild (n = 10) or moderate-to-severe TBI (n = 15), and 21 matched controls (aged 8 to 20 years) participated in the study. An open-ended cooking task was designed to test multi-tasking abilities. It required the preparation of two simple recipes using specific instructions. Outcome measures included the number of errors and an overall qualitative analysis of the task. Validating measures of executive functions included the Delis Kaplan Executive Function System, the Six-Part Test and two questionnaires completed by the child's primary care-giver: the Behavior Rating Inventory of Executive Function and the Dysexecutive Questionnaire for Children. Results: Internal consistency of the Children's Cooking Task was high (Cronbach's alpha = .86), as was test–retest reliability (ICC = .89). Children with moderate-to-severe TBI, as well as children with mild TBI made significantly more errors in the Children's Cooking Task in comparison to controls (p < .001). The CCT was correlated with several tests and one questionnaire of executive functioning (Trails, verbal fluency, sorting, 20 questions, Dysexecutive Questionnaire). Discussion and Conclusion: The Children's Cooking Task has good interrater and test–retest reliability, as well as good discriminant and concurrent validity.