Family involvement in rehabilitation programmes for children and adolescents with acquired brain injury: A scoping literature review.

Paediatric acquired brain injury (ABI) can adversely impact families, and it is widely accepted that families should be involved in the rehabilitation of children/adolescents with ABI. However, there is limited guidance about how to best involve families in paediatric ABI rehabilitation. Several programmes involving the families of children/adolescents with ABI have been developed, but there are no published reviews outlining their characteristics. This scoping literature review aimed to synthesize information about these programmes and develop an understanding of how families are involved in them. Four databases were systematically searched to identify sources of evidence that described programmes in paediatric ABI rehabilitation that involve family members. One hundred and eight sources of evidence describing 42 programmes were included. Programmes were categorized as: service coordination (n = 11), psychosocial (n = 17), support groups (n = 4), training/instruction (n = 9), and education (n = 1). Families' involvement in these programmes varied across programme development, delivery, and evaluation stages. The findings of this scoping literature review outline how families can be involved in paediatric ABI rehabilitation. While this review outlines many approaches to supporting families, it also highlights the need for models of family-centred care to better articulate how clinicians and services can involve families in paediatric ABI rehabilitation.

The development of the gut microbiome and temperament during infancy and early childhood: A systematic review.

Temperament in early childhood is a good predictor of later personality, behavior, and risk of psychopathology. Variation in temperament can be explained by environmental and biological factors. One biological mechanism of interest is the gut microbiome (GM), which has been associated with mental and physical health. This review synthesized existing literature evaluating the relationship between GM composition and diversity, and temperament in early life. Web of Science, PsycInfo, PubMed, and Scopus were searched, and data were extracted according to PRISMA guidelines. In total, 1562 studies were identified, of which six remained following application of exclusion/inclusion criteria. The findings suggest that there is an association between higher alpha diversity and temperament: greater Surgency/Extraversion and High-Intensity Pleasure in males, and lower Effortful Control in females. Unique community structures (beta diversity) were found for Surgency/Extraversion in males and Fear in females. An emerging pattern of positive temperament traits being associated with GM communities biased toward short-chain fatty acid production from a metabolism based on dietary fiber and complex carbohydrates was observed and is worthy of further investigation. To gain deeper understanding of the relationship, future research should investigate further the functional aspects of the microbiome and the influence of diet.

Rehabilitation models of care for children and youth living with traumatic brain and/or spinal cord injuries: A focus on family-centred care, psychosocial wellbeing, and transitions.

To describe current rehabilitation models of care and programmes, in Australia and internationally, related to family-centred care, psychosocial support, and transitions used for children and youth who have sustained major traumatic brain and/or spinal cord injuries. Fourteen services were interviewed, including eight medical rehabilitation services, three community-based rehabilitation services, two insurance services, and one state-wide education service provider. Semi-structured interviews were transcribed and analysed using qualitative content analysis in NVivo. Compared to the number of services supporting children and youth with traumatic brain injury, a very limited number supported those with spinal cord injury. Although valued and often included in the model of care, family-centred care was rarely systematically evaluated by the services. Most services provided psychosocial and transition support to children and youth, and their families in the short-term post-injury, but not in the long-term. Several challenges also hindered the smooth delivery of these support services, including poor communication between service providers. These findings show that services aimed to provide the best possible care to these children and youth, and their families; guided by rehabilitation models of care. However, challenges persist with regards to delivering family-centred care, coordinating return to school, and providing long-term support for psychosocial problems and transition.

Sleep Disturbances in Young Adults with Childhood Traumatic Brain Injury: Relationship with Fatigue, Depression, and Quality of Life.

OBJECTIVE: This study assessed the consequences of childhood traumatic brain injury (TBI) on sleep, fatigue, depression, and quality of life (QoL) outcomes and explored the relationships between these variables at 20 years following childhood TBI. PARTICIPANTS: We followed up 54 young adults with mild, moderate, and severe TBI, and 13 typically developing control (TDC) participants, recruited at the time of TBI. METHODS: Sleep was assessed with the Pittsburgh Sleep Quality Index and actigraphy. RESULTS: At 20 years postinjury, results showed no significant difference between whole TBI group and TDC participants on subjective sleep quality; however, the moderate TBI group reported significantly poorer subjective sleep quality compared to those with severe TBI. Poorer subjective sleep was associated with increased symptoms of fatigue, depression, and poorer perceptions of General Health in the TBI group. Actigraphic sleep efficiency, fatigue, depression, and QoL outcomes were not significantly different between TBI and TDC or among TBI severity groups. CONCLUSIONS: These preliminary findings underscore associations between subjective sleep disturbance, fatigue, depression, and QoL in this TBI sample, and mostly comparable outcomes in sleep, fatigue, depression, and QoL between the TBI and TDC groups. Further research is required to clarify these findings.

A Systematic Review of Sleep-Wake Disturbances in Childhood Traumatic Brain Injury: Relationship with Fatigue, Depression, and Quality of Life.

OBJECTIVE: To systematically appraise the literature on the prevalence, types, and predictors of sleep-wake disturbances (SWD), and on the relationship between SWD, fatigue, depression, and quality of life in children and adolescents with traumatic brain injury (TBI). METHODS: MEDLINE, PubMed, PsychInfo, Web of Science, and EMBASE databases were searched, reference lists of retrieved articles were also searched for relevant articles, and study methods were evaluated for risk of bias. RESULTS: Of the 620 articles assessed, 16 met inclusion criteria. Sleep-wake disturbances were common in childhood TBI. The most common types of SWD reported were insomnia and excessive daytime sleepiness, with mild TBI participants showing a trend toward more sleep maintenance insomnia, while sleep-onset insomnia was typical in those with moderate-severe TBI. Predictors of SWD reported in studies involving mild TBI participants included TBI severity, male sex, preexisting SWD, high body weight, and depression; while injury severity and internalizing problems were associated with SWD in moderate-severe TBI participants. Sleep-wake disturbances were also associated with fatigue and poor quality of life following TBI. CONCLUSION: Sleep-wake disturbances are highly prevalent in childhood TBI, regardless of injury severity. Routine assessments of SWD in survivors of childhood TBI are recommended.

Fatigue following Paediatric Acquired Brain Injury and its Impact on Functional Outcomes: A Systematic Review.

Fatigue is a commonly reported sequela following an acquired brain injury (ABI), and can have a negative impact on many areas of a child's life. However, there is minimal research that focuses on fatigue specifically, and so factors such as its occurrence, duration, and impact on functioning remain uncertain. This systematic review aims to provide a comprehensive summary of the research to date, bringing together a number of studies with a focus on paediatric ABI and fatigue. Terms were searched in relevant databases (PsycInfo, Medline, CINAHL), and articles were included or excluded based on specified criteria. Of the 1177 papers identified in the original search, a total of 9 papers met inclusion criteria, and were categorised as traumatic brain injury (TBI; n = 4), meningitis and meningococcal disease (n = 2), brain tumours (n = 2), and mixed ABI group (n = 1). Key findings suggest that fatigue is a problem encountered by a significant proportion of patients in all the studies reviewed, and often occurred regardless of the cause; fatigue was also associated with poor academic achievement, limited physical activity, and social and emotional problems. Injuries of greater severity were associated with higher levels of fatigue and worse outcomes. Several management options were suggested, though their efficacy was not reported. Future research is required with a suggested focus on using multiple time points to better understand the trajectories of fatigue following childhood ABI, and to build an evidence base to determine which management options are most suitable.

Delineating the impact of childhood traumatic brain injury (TBI) on long-term depressive symptom severity: Does sub-acute brain morphometry prospectively predict 2-year outcome?

Despite evidence of a link between childhood TBI and heightened risk for depressive symptoms, very few studies have examined early risk factors that predict the presence and severity of post-injury depression beyond 1-year post injury. This longitudinal prospective study examined the effect of mild-severe childhood TBI on depressive symptom severity at 2-years post-injury. It also evaluated the potential role of sub-acute brain morphometry and executive function (EF) in prospectively predicting these long-term outcomes. The study involved 81 children and adolescents with TBI, and 40 age-and-sex matched typically developing (TD) controls. Participants underwent high-resolution structural magnetic resonance imaging (MRI) sub-acutely at five weeks post-injury (M = 5.55; SD = 3.05 weeks) and EF assessments were completed at 6-months post-injury. Compared to TD controls, the TBI group had significantly higher overall internalizing symptoms and were significantly more likely to exhibit clinically significant depressive symptoms at 2-year follow-up. The TBI group also displayed significantly lower EF and altered sub-acute brain morphometry in EF-related brain networks, including the default-mode network (DMN), salience network (SN) and central executive network (CEN). Mediation analyses revealed significant indirect effects of CEN morphometry on depression symptom severity, such that lower EF mediated the prospective association between altered CEN morphometry and higher depression symptoms in the TBI group. Parallel mediation analyses including grey matter morphometry of a non-EF brain network (i.e., the mentalising network) were not statistically significant, suggesting some model specificity. The findings indicate that screening for early neurostructural and neurocognitive risk factors may help identify children at elevated risk of depressive symptoms following TBI. For instance, children at greatest risk of post-injury depression symptoms could be identified based in part on neuroimaging of networks implicated in EF and post-acute assessments of executive function, which could support more effective allocation of limited intervention resources.

Comparative Analysis of Health- and Vision-Related Quality of Life Measures among Trinidadians with Low Vision and Normal Vision-A Cross-Sectional Matched Sample Study.

This cross-sectional study investigated the health-related and vision-related quality of life measures of adults with low vision compared to healthy individuals in Trinidad and Tobago. The health-related quality of life (HRQOL-14) and the National Eye Institute Visual Functioning Questionnaire (NEI-VFQ-25) were administered to 20 participants with low vision caused by diabetic retinopathy, retinitis pigmentosa, glaucoma, and macular degeneration, as well as 20 participants with no visual problems (control). Participants were recruited from the University Eye Clinic in Trinidad and Tobago. Compared to the controls, more participants in the low-vision group had lower age-adjusted NEI-VFQ-25 scores (48.3% vs. 95.1%; p < 0.001), had poor general (47.5% vs. 10%, p = 0.004) and mental (100% vs. 10%, p < 0.042) health, experienced greater activity limitation due to impairment or health problems (85% vs. 20%, p < 0.001), needed help with personal care (27.5% vs. 0%, p < 0.009) and daily routine (67.5% vs. 0%, p < 0.001), and experienced sleep problems (97.5% vs. 65%, p < 0.001) and symptoms of anxiety (100% vs. 90%, p = 0.042). All the diabetic retinopathy participants (100%, p = 0.028) had two or more impairments or vision problems compared to none in the other low-vision participants. In summary, the HRQOL-14 and NEI-VFQ-25 scores were significantly reduced in low-vision participants, who also demonstrated a greater vulnerability to poor quality of life in the presence of diabetes retinopathy. These findings have important clinical implications regarding offering appropriate support and interventions to improve quality of life outcomes in individuals with low vision.

Predictors of participation and quality of life following major traumatic injuries in childhood: a systematic review.

OBJECTIVE: Review the literature on predictors of participation and quality of life in children and young people who sustained a traumatic brain injury (TBI), spinal cord injury (SCI), and/or multi-trauma in a motor vehicle or other accident or trauma. DESIGN: This systematic review was conducted and reported in line with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA). The protocol was registered on PROSPERO (registration number CRD42020131698). Electronic databases were searched for studies published between January 2000 and August 2020. Prospective and retrospective cohort studies were considered and risk of bias was assessed using the Quality In Prognosis Studies (QUIPS) tool. RESULTS: The search yielded 5771 articles of which 30 studies met the inclusion criteria. Nineteen studies included patients with TBI and 11 with SCI. No studies of patients with multi-trauma met criteria. Evidence was found for associations with various factors (e.g., injury severity, level of education, mental health problems), although these findings are limited due to the quality of the studies (5 studies moderate and 25 high risk of bias). CONCLUSION: Research on predictors of participation and quality of life following major traumatic injuries in childhood is lacking. More methodologically sound prospective, longitudinal studies are needed across different injury groups to further elucidate predictors of outcome.IMPLICATIONS FOR REHABILITATIONWhile long-term participation and quality of life is influenced by injury characteristics (i.e., injury severity), a number of potential modifiable factors can be targeted to improve outcomes following traumatic injuries in childhood.Young people should be provided with support to stay in school and pursue further education.Early intervention and prevention of mental health problems may improve long-term outcomes.Better management of ongoing medical problems and greater support for functional independence may improve participation.

Family-centred care for children with traumatic brain injury and/or spinal cord injury: a qualitative study of service provider perspectives during the COVID-19 pandemic.

OBJECTIVES: COVID-19 has led to rapid changes in rehabilitation service provision for young people living with traumatic brain and/or spinal cord injury. The aim of this project was to understand the experiences of rehabilitation service providers during the acute response stage of the COVID-19 pandemic. Specifically, we aimed to identify innovative approaches to meeting the ongoing needs of young people with traumatic brain and/or spinal cord injury during this time. SETTING: This study was conducted at a research institute and involved remote interviews with key informants around Australia and internationally. PARTICIPANTS: Key informants from 11 services supporting children and/or adolescents with traumatic brain injury and/or spinal cord injury were interviewed using a semistructured interview guide. Interviews were transcribed and analysed using inductive thematic analysis. RESULTS: Three key themes emerged: (1) recognising and responding to the experiences of families during the pandemic, (2) the impact of greater use of telehealth on care delivery, and (3) realising opportunities to enhance family-centred care. CONCLUSIONS: These themes capture shifting perspectives and process changes relevant to longer term practice. Research findings suggest opportunities for future service development, enabling service delivery that is more family centred, flexible and efficient in meeting the needs of families. Understanding these experiences and the changed nature of service delivery provides important insights with implications for future service improvement.

Resting-state network organisation in children with traumatic brain injury.

Children with traumatic brain injury are at risk of neurocognitive and behavioural impairment. Although there is evidence for abnormal brain activity in resting-state networks after TBI, the role of resting-state network organisation in paediatric TBI outcome remains poorly understood. This study is the first to investigate the impact of paediatric TBI on resting-state network organisation using graph theory, and its relevance for functional outcome. Participants were 8-14 years and included children with (i) mild TBI and risk factors for complicated TBI (mildRF+, n = 20), (ii) moderate/severe TBI (n = 15), and (iii) trauma control injuries (n = 27). Children underwent resting-state functional magnetic resonance imaging (fMRI), neurocognitive testing, and behavioural assessment at 2.8 years post-injury. Graph theory was applied to fMRI timeseries to evaluate the impact of TBI on global and local organisation of the resting-state network, and relevance for neurocognitive and behavioural functioning. Children with TBI showed atypical global network organisation as compared to the trauma control group, reflected by lower modularity (mildRF + TBI and moderate/severe TBI), higher smallworldness (mildRF + TBI) and lower assortativity (moderate/severe TBI ps < .04, Cohen's ds: > .6). Regarding local network organisation, the relative importance of hub regions in the network did not differ between groups. Regression analyses showed relationships between global as well as local network parameters with neurocognitive functioning (i.e., working memory, memory encoding; R2 = 23.3 - 38.5%) and behavioural functioning (i.e., externalising problems, R2 = 36.1%). Findings indicate the impact of TBI on global functional network organisation, and the relevance of both global and local network organisation for long-term neurocognitive and behavioural outcome after paediatric TBI. The results suggest potential prognostic value of resting-state network organisation for outcome after paediatric TBI.

Objective sleep outcomes 20 years after traumatic brain injury in childhood.

Purpose: To assess objective sleep outcomes and correlates in young adults with a history of childhood traumatic brain injury.Materials and methods: Participants included 45 young adults who sustained brain injury in childhood (mild = 12, moderate = 22, and severe = 11) and 13 typically developing control participants. Sleep was assessed with actigraphy and sleep diaries recorded over 14 consecutive days. Rates of good sleep (sleep efficiency ≥ 85%) and poor sleep (sleep efficiency < 85%) were also evaluated.Results: At 20-years postinjury, participants with traumatic brain injury and controls presented with similar outcomes across the objective sleep parameters (all p > 0.050) and rates of poor sleepers were also similar between these groups (p = 0.735): 67% and 77%, respectively. However, moderate and severe traumatic brain injury and female sex were associated with longer sleep duration.Conclusions: These findings provide preliminary insights into objective sleep outcome and associated factors in the very-long-term after childhood brain injuries. They also indicate the need to monitor sleep outcomes in young adults with and without traumatic brain injury.Implication for rehabilitationSustaining traumatic brain injury in childhood can impact on several functional domains including sleep.Sleep disturbances, particularly insomnia-related symptoms, are common in this population, with evidence of poor outcomes reported until adolescence postinjury, while outcomes beyond adolescence remain unexplored.In this first investigation of objective sleep outcomes in young adults with a history of childhood traumatic brain injury, we showed that insomnia-related symptoms are highly prevalent in both young adults with traumatic brain injury (67%) and healthy controls (77%).These findings suggest the need to routinely evaluate and treat sleep problem in young adults in general, irrespective of history of childhood traumatic brain injury.

Young adults' perspectives on health-related quality of life after paediatric traumatic brain injury: A prospective cohort study.

BACKGROUND: Quality of life (QoL) is commonly affected in children and families living with traumatic brain injury (TBI). Despite the established link between childhood TBI and reduced health-related QoL (HRQoL), there is a dearth of longitudinal, prospective research to determine the prevalence and predictors of impaired HRQoL in the very long term post-injury. OBJECTIVES: We evaluated HRQoL in young adult survivors of paediatric TBI at 15 years post-injury. We aimed to identify the prevalence of impaired HRQoL and the respective contribution of pre-injury, environmental, injury-related, cognitive and mood-based factors to various dimensions of HRQoL at 15 years post-injury. METHODS: This prospective study involved 52 young adult survivors of mild to severe TBI included from consecutive hospital admissions to the Royal Children's Hospital Melbourne, Australia between 1993 and 1997. Participants underwent neuropsychological evaluation and completed self-report measures of HRQoL, psychological functioning and social communication at 15 years post-injury. RESULTS: As compared with an age-matched Australian normative sample, the TBI group reported significantly poorer physical HRQoL at 15 years post-injury. Although group differences in other HRQoL domains did not reach statistical significance, 52% of the TBI group reported impaired functioning in at least one HRQoL domain. Contrary to expectations, HRQoL was not associated with injury severity, socioeconomic status, or pre-injury functioning. Instead, poorer HRQoL was linked to more severe depression symptoms, greater perceived social communication difficulty and reduced cognitive flexibility at 15 years post-injury. CONCLUSIONS: A substantial proportion of young adult survivors of childhood TBI experience poor HRQoL in at least one domain of functioning at 15 years post-injury. These findings suggest that, even in the very long term post-injury, the identification and treatment of modifiable risk factors has potential to improve very-long-term HRQoL outcomes in this vulnerable population.

Outcomes of Subjective Sleep-Wake Disturbances Twenty Years after Traumatic Brain Injury in Childhood.

Sleep-wake disturbances (SWD) are frequent following traumatic brain injury (TBI) in childhood. However, outcomes of SWD following transition into young adulthood remain unknown. This study investigated prevalence and factors associated with subjective sleep quality, insomnia, and excessive daytime sleepiness in young adults with a history of childhood TBI. Participants included 54 young adults with mild (n = 14), moderate (n = 27), and severe (n = 13) TBI (age: mean = 27.7, SD = 3.3), and 13 typically developing controls (TDC) (age: mean = 25.9, SD = 2.2). SWD were assessed using the Pittsburgh Sleep Quality Index (PSQI), Insomnia Severity Index (ISI), and Epworth Sleepiness Scale (ESS). Compared with TDC, young adults with TBI reported a trend toward poorer sleep quality (F[1, 63] = 3.85, p = 0.054, η2 = 0.06), with a higher risk in participants after moderate TBI (mean = 2.40, SD = 0.56) than after severe TBI (mean = 1.89, SD = 0.62: p = 0.015). However, the groups did not differ on symptoms of insomnia and excessive daytime sleepiness, and SWD were less frequent after severe TBI at 20 years post-injury. Poor sleep quality in young adults with TBI was associated with high levels of anxiety and pain, and pain was also associated with higher risk of insomnia and excessive daytime sleepiness. Our findings indicate that sustaining TBI in childhood can increase risk of SWD in young adulthood, particularly following moderate TBI. Routine assessments and treatment of SWD, as well as anxiety and pain in children with TBI, should therefore continue into adulthood.